Spinal Cord Injury
International Perspectives on
International Perspectives on Spinal Cord Injury
WHO Library Cataloguing-in-Publication Data International perspectives on spinal cord injury / edited by Jerome Bickenbach ... [et al] 1.Spinal cord injuries – history. 2.Spinal cord injuries – epidemiology. 3.Spinal cord injuries – prevention and control. 4.Spinal cord injuries – rehabilitation. 5.Delivery of health care. 6.Disabled persons - psychology. I.Bickenbach, Jerome. II.Officer, Alana. III.Shakespeare, Tom. IV.von Groote, Per. V.World Health Organization. VI.The International Spinal Cord Society. ISBN 978 92 4 156466 3 ISBN 978 92 4 069185 8 (Daisy) ISBN 978 92 4 069186 5 (ePub) (NLM classification: WL 403)
© World Health Organization 2013 All rights reserved. Publications of the World Health Organization are available on the WHO web site (www.who.int) or can be purchased from WHO Press, World Health Organization, 20 Avenue Appia, 1211 Geneva 27, Switzerland (tel.: +41 22 791 3264; fax: +41 22 791 4857; e-mail: bookorders@who.int). Requests for permission to reproduce or translate WHO publications –whether for sale or for non-commercial distribution – should be addressed to WHO Press through the WHO web site (www.who.int/about/licensing/copyright_form/en/index.html). The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement. The mention of specific companies or of certain manufacturers’ products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters. All reasonable precautions have been taken by the World Health Organization to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall the World Health Organization be liable for damages arising from its use. The named authors alone are responsible for the views expressed in this publication. Printed in Malta.
Contents Preface vii Acknowledgements ix Contributors xi 1. Understanding spinal cord injury 1 Aim and scope of this report 4 What is spinal cord injury? 4 4 The medical dimension The historical dimension of spinal cord injury 6 Spinal cord injury as a challenge to health systems and to society 7 7 Tools for understanding the spinal cord injury experience Overview 9 2. A global picture of spinal cord injury 11 13 What do we know about spinal cord injury? 15 Prevalence of spinal cord injury Incidence of spinal cord injury 17 17 Traumatic spinal cord injury 22 Non-traumatic spinal cord injury Mortality and life expectancy 22 Costs of spinal cord injury 26 Data and evidence for spinal cord injury 28 Data sources 28 Information standards 30 Data issues and concerns 31 Definitions and standardization of data 31 Underreporting 31 Other issues 31 Conclusion and recommendations 32 3. Prevention of spinal cord injury 43 Causes of traumatic spinal cord injury 45 Road traffic crashes 46 Falls 49 Violence 49 Causes of non-traumatic spinal cord injury 51 Activities, places and circumstances associated with spinal cord injuries 52 iii
Occupational injuries Sport and recreation-related injuries Natural disasters Conclusion and recommendations 4. Health care and rehabilitation needs Understanding the health impact of spinal cord injury Potential complications Health care needs Pre-hospital and acute care Post-acute medical care and rehabilitation Assistive technology Health maintenance Conclusion and recommendations
52 55 58 59 65 68 69 72 72 73 78 81 83
5. Health systems strengthening 93 95 Unmet needs 95 Health care Rehabilitation 96 Health systems strengthening 97 Leadership and governance 97 Service delivery 98 Human resources 103 Health technologies 105 Health information systems 107 Financing and affordability 109 Research 110 Conclusion and recommendations 112 6. Attitudes, relationships and adjustment 121 Attitudes 124 Wider community attitudes 124 Attitudes of health professionals 125 Assistance and support 126 Informal care 126 Formal care 128 Personal assistants 128 Family relationships 129 Partners 130 Parent and sibling relationships 131 Adjustment to spinal cord injury 132 Conclusion and recommendations 137
iv
7. Spinal cord injury and enabling environments 147 Barriers for people with spinal cord injury 149 Housing 150 Transportation 150 Public buildings 151 Addressing the barriers 151 Cross-cutting measures 151 Housing 153 Transportation 156 Public buildings 157 Conclusion and recommendations 160 8. Education and employment 167 Spinal cord injury and participation in education 170 Addressing barriers to education 171 Legislation and policy 171 Support for children with spina bifida 172 Returning to school after injury 172 Transitions from school 173 Reducing physical barriers 174 Reasonable accommodations 174 Funding education and accommodations 175 Social support 175 Addressing attitudinal barriers 176 Spinal cord injury and participation in employment 177 Addressing barriers to employment 178 Vocational training and supported employment 179 Overcoming misconceptions about spinal cord injury 182 Ensuring workplace accommodations 182 Self-employment 184 Social protection 185 Conclusion and recommendations 186 9. The way forward: recommendations 195 Key findings 197 1. Spinal cord injury is a significant public health issue 197 2. Personal and social impacts of spinal cord injury are considerable 198 3. Barriers to services and environments restrict participation and undermine quality of life 199 4. Spinal cord injury is preventable 199 5. Spinal cord injury is survivable 200 6. Spinal cord injury need not prevent good health and social inclusion 201 Recommendations 201 v
1. Improve health sector response to SCI 201 2. Empower people with SCI and their families 201 3. Challenge negative attitudes to people with SCI 202 4. Ensure that buildings, transport and information are accessible 202 5. Support employment and self-employment 202 6. Promote appropriate research and data collection 202 Next steps 202 Conclusion 204 Technical appendix A Technical appendix B Technical appendix C Technical appendix D 207 211 213 215
Glossary 217 Index 221
vi
Preface
The international symbol of disability is the wheelchair and the stereotype of a person with disability is a young man with paraplegia. While these images are very familiar, at the same time we know that this is not an accurate picture of the diversity of global disability. Whereas 15% of the population are affected by disability, less than 0.1% of the population have spinal cord injury. However, spinal cord injury is particularly devastating, for two reasons. First, it often strikes out of the blue. A driver is tired and inebriated late at night, and veers off the road, resulting in a roll-over crash and consequent tetraplegia. The teenager dives into a pool, only to break her neck. A workman falls from scaffolding, and becomes paraplegic. An earthquake strikes and a person’s back is injured by falling masonry. A middle aged woman is paralysed due to pressure from a tumour. In all these examples, someone in the prime of their life becomes disabled in an instant. None of us are immune from this risk. Second, the consequences of SCI are commonly either premature mortality or at best social exclusion. Trauma care systems are frequently inadequate. For many, access to high quality rehabilitation and assistive devices is unavailable. Ongoing health care is lacking, which means that a person with spinal cord injury is likely to die within a few years from urinary tract infections or pressure sores. Even when individuals are lucky enough to receive the health and rehabilitation care they require, they are likely to be denied access to the education and employment which could enable them to regain their independence and make a contribution to their families and their society. None of these devastating outcomes is necessary. The message of this report is that spinal cord injury is preventable; that spinal cord injury is survivable; and that spinal cord injury need not prevent good quality of life and full contribution to society. The report contains the best available scientific evidence about strategies to reduce the incidence of spinal cord injury, particularly from traumatic causes. The report also discusses how the health system can respond effectively to people who are injured. Finally, the report discusses how personal adjustment and relationships can be supported, how barriers in the environment can be removed, and how individuals with spinal cord injury can gain access to schools, universities and workplaces. We can turn spinal cord injury from a threat into an opportunity. This has two dimensions. First, spinal cord injury challenges almost every aspect of the health system. So enabling health systems to react effectively to the challenge of spinal cord injury will mean that they can respond better to many other types of illness and injury. Second, a world which is hospitable to people with spinal cord injury in particular will inevitably be more inclusive vii
International Perspectives on Spinal Cord Injury
of disability in general. Improved accessibility and greater availability of assistive devices will help millions of the world’s disabled and older people. And finally, of course, the word “opportunity” signals the better lives and the productive contribution to which people with spinal cord injury rightly aspire, and which we can help them to attain, if only we have the political will and the organizational commitment. As earlier with the World report on disability, so now with International Perspectives on Spinal Cord Injury, this report has potential to change lives and open doors. I urge the world’s policy-makers to pay attention to its findings. Dr Margaret Chan Director-General
viii
Acknowledgements
The World Health Organization (WHO) and the International Spinal Cord Society (ISCoS) would like to thank the more than 200 contributors (editors, regional consultation participants and peer reviewers) to this report from 30 countries around the world. Acknowledgement is also due to the report advisors, WHO staff and the staff of ISCoS and Swiss Paraplegic Research (SPF) for offering their support and guidance. Without their dedication and expertise, this report would not have been possible. The report also benefited from the contribution of many other people: in particular David Bramley and Philip Jenkins, who edited the final text of the main report, and Angela Burton, who developed the alternative text which is used by screen readers to display the content of figures and images in order to make them accessible for those with visual impairments. Thanks are also due to the following: Natalie Jessup, Sue Lukersmith and Margie Peden for technical support in the development of the report. Concerning analysis and interpretation of data, thanks are due to Martin Brinkhof, Somnath Chatterji and Colin Mathers, and for translating non English language studies to Nicole Andres, Carolina Ballert, Pavel Ptyushkin and Hua Cong Wen. The report benefitted from the work of James Rainbird for proofreading, Christine Boylan for indexing, and Susan Hobbs and Adele Jackson for graphic design. Finally, thanks to Rachel McLeod-Mackenzie for her administrative support and for the production of the report in accessible formats, with support from Melanie Lauckner. WHO and ISCoS would especially like to thank SPF for their support in coordinating the development of the Report and the Swiss Paraplegics Association (SPV), SPF and Swiss Paraplegic Foundation (SPS) for their financial support for the development, translation and publication of the report.
Cover design by Brian Kellett
In 2003, Brian Kellett developed T4 complete paraplegia after a mountain bike accident. Through the arts, he was enabled to accept and adapt to his injury. As an adjunct instructor at his undergraduate college, and in his artwork, he is thankful that his disability gives him a unique narrative to reflect on and share with others. He works as a freelance photographer and designer and is also continuing his academic studies at Ohio State University in the Art Education PhD program. His goal is to create a non-profit organization, working with disabled veterans teaching them therapeutic photography. ix
Contributors
Editorial Committee Jerome Bickenbach, Cathy Bodine, Douglas Brown, Anthony Burns, Robert Campbell, Diana Cardenas, Susan Charlifue, Yuying Chen, David Gray, Leonard Li, Alana Officer, Marcel Post, Tom Shakespeare, Anne Sinnott, Per von Groote, Xianghu Xiong.
Executive Editors Jerome Bickenbach, Alana Officer, Tom Shakespeare, Per von Groote.
Technical Editors David Bramley, Philip Jenkins.
Advisory Committee Frank Abel, Michael Baumberger, Pietro Barbieri, Fin Biering-Sørensen, Anne Carswell, Fred Cowell, Joel DeLisa, Wagih El Masri(y), Stella Engel, Edelle FieldFote, Jan Geertzen, Anne Hawker, Joan Headley, Jane Horsewell, Daniel Joggi, Apichana Kovindha, Etienne Krug, Gerold Stucki, Maluta Tshivhase, Isabelle Urseau, Jean-Jacques Wyndaele.
Contributors to individual chapters Chapter 1: Understanding spinal cord injury Contributors: Jerome Bickenbach, Fin Biering-Sørensen, Joanna Knott, Tom Shakespeare, Gerold Stucki, George Tharion, Joy Wee. Box: Jerome Bickenbach (1.1).
Chapter 2: A global picture of spinal cord injury
Contributors: Jerome Bickenbach, Inga Boldt, Martin Brinkhof, Jonviea Chamberlain, Raymond Cripps, Michael Fitzharris, Bonne Lee, Ruth Marshall, Sonja Meier, Michal Neukamp, Peter New, Richard Nicol, Alana Officer, Brittany Perez, Per von Groote, Peter Wing. Boxes: Martin Brinkhof, Jonviea Chamberlain, Sonja Meier (2.1), Jerome Bickenbach (2.2), Per von Groote (2.3). xi
International Perspectives on Spinal Cord Injury
Chapter 3: Prevention of spinal cord injury
Contributors: Douglas Brown, Robert Campbell, George Coetzee, Michael Fitzharris, Fazlul Hoque, Shinsuke Katoh, Olive Kobusingye, Jianan Li, Ruth Marshall, Chris Mikton, Peter New, Alana Officer, Avi Ohry, Ari Seirlis, Per von Groote, Dajue Wang, Eric Weerts, Joy Wee, Gabi Zeilig. Boxes: Michael Fitzharris (3.1), Fazlul Hoque (3.2), Martin Brinkhof, Jonviea Chamberlain, Sonja Meier (3.3), George Coetzee, Alana Officer (3.4), Richard Nicol (3.5), Balraj Singhal, Rick Acland, David Walton, Wayne Viljoen, Clint Readhead (3.6).
Chapter 4: Health care and rehabilitation needs
Contributors: Cathy Bodine, Brian Burne, Anthony Burns, Diana Cardenas, Catharine Craven, Lisa Harvey, Graham Inglis, Mark Jensen, Natalie Jessup, Paul Kennedy, Andrei Krassioukov, Richard Levi, Jianjun Li, Sue Lukersmith, Ruth Marshall, James Middleton, Carrie Morris, Peter New, Alana Officer, Govert Snoek, Xianghu Xiong. Box: Natalie Jessup (4.1).
Chapter 5: Health systems strengthening
Contributors: Cathy Bodine, Yuying Chen, Harvinder Chhabra, William Donovan, Julia D’Andrea Greve, Natalie Jessup, Carlotte Kiekens, Suzy Kim, Jiri Kriz, Jianan Li, Leonard Li, Sue Lukersmith, Ruth Marshall, Alana Officer, Sheila Purves, Haiyan Qu, Lawrence Vogel, Per von Groote, William Waring, Jacqueline Webel, Eric Weerts. Boxes: James Gosney, Xia Zhang (5.1), Ruth Marshall (5.2), Anca Beudean (5.3), James Guest (5.4).
Chapter 6: Attitudes, relationships and adjustment
Contributors: Caroline Anderson, Susan Charlifue, Jessica Dashner, Stanley Ducharme, Martin Forchheimer, David Gray, Richard Holmes, Jane Horsewell, Margareta Kreuter, Mary-Jane Mulcahey, Richard Nicol, Joanne Nunnerley, Marcel Post, Shivjeet Raghaw, Tom Shakespeare, Cyril Siriwardane, Tomasz Tasiemski, Lawrence Vogel. Boxes: Carwyn Hill (6.1), Jane Horsewell, Per von Groote (6.2), Cyril Siriwardane (6.3).
Chapter 7: Spinal cord injury and enabling environments
Contributors: Jerome Bickenbach, Meghan Gottlieb, David Gray, Sue Lukersmith, Jan Reinhardt, Tom Shakespeare, Anne Sinnott, Susan Stark, Per von Groote. Boxes: Samantha Whybrow (7.1), Jerome Bickenbach (7.2).
Chapter 8: Education and employment
Contributors: Caroline Anderson, Elena Ballantyne, Jerome Bickenbach, Kathryn Boschen, Normand Boucher, David Gray, Erin Kelly, Sara Klaas, Lindsey Miller, Kerri Morgan, Carrie Morris, Marcel Post, Tom Shakespeare, Lawrence Vogel, Per von Groote, Kathy Zebracki. Boxes: Jerome Bickenbach (8.1), Marcel Post (8.2), Jerome Bickenbach (8.3).
xii
Contributors
Chapter 9: The way forward: recommendations Technical appendices
Contributors: Alana Officer, Tom Shakespeare, Per von Groote. Contributors: Inga Boldt, Martin Brinkhof, Jonviea Chamberlain, Sonja Meier, Michal Neukamp, Per von Groote.
Narrative contributors
The report includes narratives with personal accounts of the experiences of people with disabilities. We want to thank Mónica Agotegaray, David Gray, Julia D’Andrea Greve, Maher Saad Al Jadid, Norah Keitany, Apichana Kovindha, Sue Lukersmith, Ruth Marshall, Alexandra Rauch, Carolina Schiappacasse, Anne Sinnott, Kelly Tikao, Xia Zhang for their assistance in recruiting narrative contributors. Many people provided a narrative but not all could be included in the report. Only the first name of each narrative contributor and their country of origin has been provided for reasons of confidentiality.
Peer reviewers Fin Biering-Sørensen, Johan Borg, Martin Brinkhof, Douglas Brown, Thomas Bryce, Paola Bucciarelli, Marcel Dijkers, Pat Dorsett, Inge Eriks-Hoogland, Reuben Escorpizo, Szilvia Geyh, Ellen Hagen, Claes Hultling, Rebecca Ivers, Desleigh de Jonge, Chapal Khasnabis, Ingeborg Lidal, Anna Lindström, Rod McClure, Stephen Muldoon, Rachel Müller, Claudio Peter, Ranjeet Singh, Alexandra Rauch, Jan Reinhardt, Marcalee Sipski Alexander, John Stone, Thomas Stripling, Denise Tate, Armando Vasquez, Eric Weerts, Gale Whiteneck.
Additional Contributors Regional consultants Sergio Aito, Fin Biering-Sørensen, Susan Charlifue, Yuying Chen, Harvinder Chhabra, Wagih ElMasri(y), Stella Engel, Michael Fitzharris, Harish Goyal, Sonja de Groot, Lisa Harvey, Nazirah Hasnan, Jane Horsewell, Jianan Li, Sue Lukersmith, Ketna Mehta, Stephen Muldoon, Joanne Nunnerley, Marcel Post, Shivjeet Raghaw, Cyril Siriwardane, Tomasz Tasiemski, Esha Thapa, Sara Varughese, Dajue Wang, Eric Weerts, Lucas van der Woude. None of the experts involved in the development of this Report declared any conflict of interest.
xiii
Chapter 1 Understanding spinal cord injury
“Before the SCI, I was a very independent person, with a very busy social life with a lot of friends, working very hard, travelling a lot, concluding my law course, dating... my life was identical to any other young female, with a lot of desire to live. After the SCI, everything changed and many dreams were interrupted – to live alone, finish the university, start a family.” (Claudia, Brazil) “While my father was cycling his tricycle and my mother sat and carried me in her arms, a car ran into the tricycle. They were both killed. I survived but became paraplegic at the age of 2. I was looked after by my grandfather who lived in a slum in Bangkok. Later, I was sent to a school for disabled children. Now I am 11, I quit from school. My brain is not good. I have bad memory but can manoeuvre a wheelchair without difficulty. Luckily, Mr B, a tetraplegic business-man, and his wife met me and agreed to look after me. Now I live with them. They gave me a sport wheelchair and planned for me to be a national wheelchair athlete in the future, and I think I can.” (Anonymous, Thailand) “When I returned from rehab(ilitation), I was welcomed back to the community at the airport and entered into another phase of my life in a chair. I was thinking that I couldn’t live my life like it was before. I was embarrassed and didn’t really want to see my friends – I was different now – I had changed. I couldn’t play football, run, go camping, ride my bike to the local river. All I wanted to do was stay inside and hide. It took about 6 months of convincing me by my first community OT before I would step out of the house. Prior to me arriving back to the community, she had already arranged for the school to construct ramps and made sure the bathrooms were accessible for me. Very slowly my confidence began to build up. Basketball was a favourite pastime for me before my accident, and while I was in rehab(ilitation) I learnt to play wheelchair basketball. I showed some of my friends how to do some tricks in my chair. Teachers started to encourage participation in school and my community by going on local excursions walking around the community identifying bush plants, as well as travelling to Cairns on a school excursion. The support from the teachers, friends and family was encouraging.” (Alfred, Australia)
1
Understanding spinal cord injury Spinal cord injury (SCI) is a medically complex and life-disrupting condition. Historically, it has been associated with very high mortality rates. Yet today, in high-income countries, SCI can be viewed less as the end of a worthwhile or productive life and more as a personal and social challenge that can be successfully overcome. This change reflects better medical provision, which means that people are able to survive, live and flourish after injury. For instance, people who develop SCI can now usually benefit from improved emergency response, effective health and rehabilitation interventions, and technologies such as respirators and appropriate wheelchairs, together with more extensive social services and more accessible environments. As a result, lives can be saved and functioning can be maximized. Many people with SCI can now anticipate not just a longer life, but also a fuller and more productive life, than they would have had in previous generations. In low-income countries the situation is very different. Traumatic SCI often remains a terminal condition. Most people with SCI in a country such as Sierra Leone die within a few years of injury (1). In low-income countries, and in many middle-income ones, the availability of quality assistive devices such as wheelchairs is very limited, medical and rehabilitation services are minimal, and opportunities to participate in all areas of personal and social life are constrained (2). The situation in many developing countries today is comparable to what it was in Europe and North America in the 1940s (3). Poverty makes life even harder for people with SCI (4). Yet the fact that such dramatic progress in survival and participation has been seen in high-income countries over a relatively short period of time should be a reason to be optimistic for other parts of the world. With the right policy responses, it should be possible to live, thrive and contribute with SCI anywhere in the world. But no one lives in a vacuum, and essential to our understanding of how people with SCI live is the overall physical, social and attitudinal environment in which they experience their day-to-day lives. The quality of life with SCI depends greatly on whether the environment is facilitating – appropriate resources and services are available, there are supportive relationships and community inclusion – or whether it acts as a barrier when people have to confront discriminatory attitudes and other obstacles, including the failure to provide supportive and facilitating services and resources. 3
International Perspectives on Spinal Cord Injury
The overall impact of SCI on the individual, and also on society at large, therefore depends on a range of factors, including: ■ the age at which the injury occurs (whether early or late in a person’s productive life); ■ the extent of the injury; ■ the availability and timing of resources and services; ■ the environment in which the person lives – physical, social, economic and attitudinal. Policy changes that ensure prompt and effective medical response and sustained rehabilitation towards full reintegration into community life are highly cost-effective and socially beneficial. The cost of providing immediate emergency and medical care is offset by the fact that this care directly saves lives. Since SCI disproportionately affects younger people with many productive years remaining, failure to allocate resources to their rehabilitation results in a substantial social waste that can be avoided through costeffective measures. Expenditure on the medical and rehabilitative responses to SCI is money well spent. More importantly, saving lives, promoting the quality of life and retaining productivity are social and humanitarian imperatives. The recommendations of this report highlight the changes in policy and practice that, as shown by evidence, can bring about large improvements in the health and quality of life of people with SCI. Steps to improve the lives of people affected by SCI must be accompanied by measures to prevent SCI. This report shows that many of the high-prevalence causes of traumatic SCI − road traffic injuries, falls, sporting and leisure injuries, and violence − can be understood, anticipated and, to a large extent, prevented.
SCI, in particular the epidemiology, services, interventions and policies that are relevant, together with the lived experience of people with SCI across the life course and throughout the world; ■ make recommendations for actions based on this evidence that are consistent with the aspirations for inclusion and participation as expressed in the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (5). This report documents the magnitude of and trends in SCI, explores prevention strategies, analyses the situation of people with SCI around the globe, and gives examples of solutions across a range of economic settings that can enhance the lived experience of SCI. These solutions range from inclusive health and rehabilitation services to improving access to education and employment, and enhancing support for family and community life. This opening chapter offers a general orientation to SCI, including a short review of the medical dimension of SCI for non-specialists and a history of SCI. It also includes a discussion of how SCI, and the systems and services that are required for enhancing the experience of living with SCI, can help the wider evaluation of the adequacy of the social response to the needs of people with health conditions and associated disabilities.
What is spinal cord injury? The medical dimension Understanding the basic anatomy and physiology is important, even though the experience of living with SCI varies greatly depending on environmental factors. The spinal cord is situated within the spinal column (see Figure 1.1); it extends down from the brain to the L1−L2 vertebral level, ending in the conus medullaris. Continuing from the end of the spinal cord, in
Aim and scope of this report The aim of International Perspectives on Spinal Cord Injury is to: ■ assemble and summarize information on 4
Chapter 1 Understanding spinal cord injury
the spinal canal, is the cauda equina (or “horse’s tail”). The spinal cord itself has neurological segmental levels that correspond to the nerve roots that exit the spinal column between each of the vertebrae. There are 31 pairs of spinal nerve roots:
8 cervical, 12 thoracic, 5 lumbar, 5 sacral and 1 coccygeal. Owing to the difference in length between the spinal column and the spinal cord, the neurological levels do not necessarily correspond to the vertebral segments.
Figure 1.1. Longitudinal organization of the spinal cord (with cervical, thoracic, lumbar and sacral segments shaded), spinal vertebrae, and spinal nerves and a rough representation of major functions of the spinal cord Nerves Functions C1–C4 Breathing Head & neck movement Cervical spinal nerves C4–T1 Heart rate control Upper limb movement (Elbow-wrist C5–C7, Finger C8–T1)
Base of skull
C1 C2 C3 C4 C5 C6 C7 C8 T1 T2 T3 T4 T5 T6 T7 T8 T9 T10 T11 T12
Vertebrae (backbones)
Thoracic spinal nerves T1–T12 Trunk control Temperature regulation Abdominal muscles
Conus medullaris Cauda equina
L1 L2 L3 L4 L5 S1 S2 S3 S4 S5 Coccygeal nerve Sacral spinal nerves S2–S4/5 Bowel, bladder & sexual function Lumbar spinal nerves L1–S1 Lower limb movement (Hip, leg & foot)
Coccyx
5
International Perspectives on Spinal Cord Injury
While there is debate about what is classified as “spinal cord injury,” all lesions to the spinal cord, conus medullaris and cauda equina are considered within the context of this report. Damage to the spinal cord may be traumatic or non-traumatic. Traumatic SCI can result from many different causes – including falls, road traffic injuries, occupational and sports injuries, and violence. Non-traumatic SCI, on the other hand, usually involves an underlying pathology – such as infectious disease, tumour, musculoskeletal disease such as osteoarthritis, and congenital problems such as spina bifida, which is a neural tube defect that arises during development of the embryo. The symptoms of spinal cord lesion depend on the extent of the injury or non-traumatic cause, but they can include loss of sensory or motor control of the lower limbs, trunk and the upper limbs, as well as loss of autonomic (involuntary) regulation of the body. This can affect breathing, heart rate, blood pressure, temperature control, bowel and bladder control, and sexual function. In general, the higher up the spinal cord the lesion occurs the more extensive the range of impairments will be. Cervical SCI commonly causes sensory and motor loss (paralysis) in the arms, body and legs, a condition called tetraplegia (the alternative term quadriplegia is now less used). Someone with C4 or higher lesions may require a ventilator to breathe because the lesion directly interferes with autonomic control. Thoracic SCI commonly causes sensory and/or motor loss in the trunk and legs, a condition called paraplegia. Lumbar SCI typically causes sensory and motor loss in the hips and legs. All forms of SCI may also result in chronic pain. The extent and severity of sensory, motor and autonomic loss from SCI depends not only on the level of injury to the spinal cord, but also on whether the lesion is “complete” or “incomplete.” According to the International Standards for Neurological Classification of SCI, with the American Spinal Injury Association (ASIA) Impairment 6
Scale (AIS), an SCI is considered complete if there is no sensory and motor function at S4−S5. While some sensory and or motor function is preserved below the level of injury in incomplete SCI, including the lowest sacral segments S4-S5, it is no less serious and can still result in severe impairments.
The historical dimension of spinal cord injury The beginning of effective SCI care can be dated to the work of the American neurosurgeon Dr Donald Munro at Boston City Hospital in the 1930s (6). His approach was emulated by Sir Ludwig Guttmann who founded the SCI unit at Stoke Mandeville Hospital in the United Kingdom in 1944 (it became the National Spinal Cord Injury Centre in 1952). The prevailing 80% mortality rate of SCI began to decline, thanks to 2-hourly turning and skin care, together with better bladder management. Improved functional outcomes were achieved with physical and occupational therapy, and more holistic care responded to the socioeconomic needs of the patients (7, 8). Guttmann emphasized sport as a method of therapy and was the founder of the Stoke Mandeville Games, which expanded to become the Paralympic Games in 1960 (9). These early centres became the model for SCI care in the United Kingdom, USA and other countries. The changing experience of SCI also reflects wider developments in the understanding of disability in general. The social response to disability has profoundly changed in the last few decades, primarily because of the advocacy of people with disabilities themselves. The disabled people’s movement has fought to achieve full inclusion and participation in all areas of society. Conceptually, the focus has shifted from disability as an individual deficit to disability as an outcome of complex interactions between features of the individual’s health and functioning and aspects of his or her physical, social and attitudinal environment. In parallel with this conceptual change, disability has become understood as
Chapter 1 Understanding spinal cord injury
a human rights concern. This well documented transformation (10 –12) has resulted in the CRPD (5). People with SCI have played leading roles in the disabled people’s movement in many countries, beginning with the early pioneers of Independent Living in Berkeley, California, USA, in the late 1960s and 1970s (10).
Spinal cord injury as a challenge to health systems and to society The complexity of the lived experience of SCI and the variations in that experience around the world mean that, despite being a comparatively low-prevalence condition, SCI has wider implications for monitoring health care. In principle, an individual with SCI will experience nearly every clinical setting that his or her country provides: emergency services, intensive care, surgery, stabilizing medical care, and particularly rehabilitation, including return to the community, vocational rehabilitation and ongoing primary care. SCI care thus provides evidence about the adequacy of a country’s services, systems and policies. It can also help clinicians, health professionals, researchers and policymakers to understand the strengths and weaknesses of their health-care system. SCI care is a good indicator of how the overall health system works – or fails to work. Beyond the health sector, the individual with SCI will require services, resources and access to the social, educational and economic sectors to lead a full and rich life. Turning to civil society, self-help groups, patient groups and other advocacy and disabled people’s organizations play a crucial role in offering knowledge, advice and support, and in lobbying for policy change. If governments and societies fail people with SCI, it is likely that they will fail people with other health conditions as well. Research and data on the experience of SCI is generally relevant to sound public health policy and to wider efforts to remove barriers to care.
The reverse is also true: SCI clinicians and researchers can benefit from research into other more prevalent conditions that share some or many of the impairments and daily challenges that confront people with SCI. Given that research into, for instance, accessible public transportation or return-to-work services will tend to concentrate on higher-prevalence health conditions and disabilities, the best evidence available may not involve SCI directly but may focus on people with “mobility problems” or “wheelchair users.” This report takes advantage of all relevant highquality research, whether directed specifically at SCI or taking a broader disability focus.
Tools for understanding the spinal cord injury experience Two tools are indispensable for comprehending the experience of SCI: the CRPD, which provides a moral compass by elaborating disability as a human rights and development issue, and WHO’s International Classification of Functioning, Disability and Health (ICF), which provides a model of functioning and disability for conceptual clarity as well as being an epidemiological classification for data collection and clinical practice (see Box 1.1). The CRPD provides the human rights orientation of this report. It specifies the civil, cultural, political, social and economic rights of people with disabilities, including people with SCI. The CRPD resulted from several years of detailed drafting with the sustained participation of disabled people’s organizations and other civil society groups. The Convention outlines not only broad aspirations – “...to promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by people with disabilities and to promote respect for their inherent dignity” – but also detailed and concrete human rights entitlements in health, education, employment and family life.
7
International Perspectives on Spinal Cord Injury
Box 1.1.
International Classification of Functioning, Disability and Health (ICF)
The ICF was developed through a long process that involved academics, clinicians and people with disabilities (13). The ICF recognizes as determinants of disabilities not only underlying health conditions but also environmental factors (products and technology, the natural and built environment, support and relationships, attitudes and services, systems and policies). The ICF also recognizes personal factors, such as motivation and self-esteem, that can influence a person’s participation in society. It further distinguishes between a person’s capacities to perform actions and the actual performance of those actions - a distinction that highlights the essential role of the person’s environment. In the ICF, problems with human functioning are categorized in three interconnected areas: impairments are problems in body function or alterations to body structure (e.g. paralysis or loss of bladder and bowel control); activity limitations are difficulties in executing activities (e.g. walking or eating); and participation restrictions are problems with involvement in any area of life (e.g. discrimination in employment or transportation). Health conditions are understood as diseases, injuries and disorders, while impairments are specific decrements in body functions, such as paralysis associated with health conditions. Environmental factors can be barriers that worsen the experience of SCI (e.g. wheelchair-inaccessible transportation), or facilitators that improve that experience (e.g. wheelchairs and rehabilitation services). Disability is used in the ICF to refer to difficulties encountered in any or all of the three areas of functioning; it arises from the interaction of health conditions with contextual factors, both environmental and personal, as represented in the figure below.
Representation of the International Classification of Functioning, Disability and Health Health condition (disorder or disease)
Body functions and structures
Activities
Participation
Environmental factors Contextual factors
Personal factors
Source (14).
As will become clear in later chapters, the CRPD sets out in very detailed language the precise areas in which human rights reform is required by the Convention. The central topics of this report – the impact of stigma and attitudes, the degree to which the environment is accessible, the availability of health and social services, and the extent to which people with SCI can participate in education, employment, and family and community life – are also the focus of the articles of the CRPD. Furthermore, and unique 8
to this United Nations human rights treaty, the CRPD mandates that States Parties should collect statistical data (Article 31) and should establish independent human rights monitoring mechanisms (Article 33) to ensure that progress in the implementation of the obligations of the CRPD can be demonstrated with evidence. Countries are obliged not merely to reform laws and practices with respect to disability, but are also obliged to provide evidence that they are doing so. This report has been designed to make
Chapter 1 Understanding spinal cord injury
available to countries and their agencies the evidence base for unmet obligations to people with SCI, as well as the best practices for fulfilling those obligations.
Overview The report follows the publication of the WHO/ World Bank World report on disability in 2011, and explores one major health condition in greater detail than was possible in that wideranging study (15). The audiences for this report are policy-makers, health service managers, professionals, representatives of nongovernmental organizations and disabled people’s organizations, and all those concerned with improving services for people with SCI, particularly in lowand middle-income countries. After this introductory chapter, the report reviews in Chapter 2 the best epidemiological evidence available on prevalence and incidence of SCI around the world. Chapter 3 examines the main causes of SCI and surveys prevention programmes that respond to these causes and risk factors. The report then turns to a comprehensive review of the medical and rehabilitation dimension of SCI in Chapter 4. This is coupled with a health systems discussion in Chapter 5 that matches best practices in interventions and treatment strategies with the evidence on the systems that are required to make these available. The report next focuses on the lived experience of SCI, beginning with relationships and attitudes in Chapter 6, moving on to general fea-
tures of SCI-enabling environments in Chapter 7, and then an in-depth look at two of the most important areas of participation – education and employment − in Chapter 8. The report concludes with cross-cutting recommendations in Chapter 9. International Perspectives on Spinal Cord Injury offers a practical guide to improving the lives of people with SCI worldwide. It summarizes evidence on needs and unmet needs, and highlights practices across service settings and countries that have been successful in overcoming barriers and addressing service shortfalls. The key messages of this report are the following. ■ SCI is a relatively low incidence but very high-cost health condition. ■ Incidence of traumatic SCI can be greatly reduced through a range of preventive strategies. ■ Mortality rates in the aftermath of SCI can be reduced through appropriate and timely health care, which also reduces the need for readmissions with secondary complications. ■ Dependency as a consequence of SCI can be avoided through provision of rehabilitation and assistive devices. ■ Poverty and social exclusion associated with SCI can be minimized through removing barriers and providing adequate support. While SCI will always have a life-changing impact, it need not end life, nor need it impose undue cost on families and societies if appropriate health and social responses are forthcoming.
References 1. 2. Gosselin RA, Coppotelli C. A follow up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 Allotey P et al. The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegics in Australia and Cameroon. Social Science & Medicine, 2003, 57:949-958. doi: http://dx.doi.org/10.1016/S02779536(02)00463-X PMID:12850119 Liverman CT et al., editors. Spinal cord injury: progress, promise, and priorities. Washington, DC, National Academies Press, 2005. Weerts E, Wyndaele JJ. Accessibility to spinal cord injury care worldwide: the need for poverty reduction. Spinal Cord, 2011, 49:767. doi: http://dx.doi.org/10.1038/sc.2011.73 PMID:21720372
3. 4.
9
International Perspectives on Spinal Cord Injury
United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 6. Eltorai IM. History of spinal cord medicine. In: Lin VW et al., eds. Spinal cord medicine: principles and practice. New York, NY, Demos Medical Publishing, 2003. 7. Silver JR. History of the treatment of spinal injuries. London, Springer, 2003. 8. Bodner DR. A pioneer in optimism: the legacy of Donald Munro MD. The Journal of Spinal Cord Medicine, 2009, 32:355356. PMID:19777856 9. Guttmann L. Sport and recreation for the mentally and physically handicapped. Royal Society of Health Journal, 1973, 93:208-212. doi: http://dx.doi.org/10.1177/146642407309300413 PMID:4276814 10. Driedger D. The last civil rights movement. London, Hurst, 1989. 11. Oliver M. The politics of disablement. Basingstoke, Macmillan and St Martin’s Press, 1990. 12. Charlton J. Nothing about us without us: disability, oppression and empowerment. Berkeley, CA, University of California Press, 1998. 13. Bickenbach JE et al. Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science & Medicine, 1999, 48:1173-1187. doi: http://dx.doi.org/10.1016/S0277-9536(98)00441-9 PMID:10220018 14. WHO. International classification of functioning, disability and health. Geneva, World Health Organization 2001, page 18. 15. WHO/World Bank. World report on disability. Geneva, World Health Organization, 2011.
5.
10
Chapter 2 A global picture of spinal cord injury
“One day I woke up and stared at the ceiling. I wanted to turn my head but I couldn’t. I wanted to lift my arm but could not. Nothing was moving. I heard a lot of noise but could not see anything. A nurse appeared beside me. I wanted to say something but she couldn’t hear me. I wanted to scream but no sounds came out. I closed my eyes. I opened them when I heard my name being called, looked up and saw my parents. Even though it seemed to me like one second between closing my eyes and opening them again, a whole day had passed. My parents told me that I had tetraplegia. My parents told me that I was in a Brussels hospital and I had a work-related injury. My neck was broken, I was totally paralysed and I could not breathe on my own. I was thirsty and asked for some water. I couldn’t drink out of the cup with a straw that was handed to me because I could not swallow. I had been working at a house. I fell off a ladder or I shifted off a ladder, I’m not quite sure anymore. I fell six metres down and landed on the concrete.” (Gunther, Belgium) “I was injured (C5–C6) in a car accident when I was 19 and have now been in a wheelchair for 30 years. I live in the most northerly city in the world, Hammerfest. Living in the North brings with it some great physical challenges with streets draped in snow for up to five months of the year and low temperatures making it hard to go outside in a wheelchair. I was among those with the greatest need of assistance when I was injured, at a time when the community really had just started to develop its home-based services. Since then I have had the privilege to participate and shape the services related to my needs, and my demands to live as normally as possible as a citizen.” (Kjell, Norway) “I was injured in the Sichuan earthquake four years ago when I was 30 years old. Now I use a wheelchair for daily movement.” (Chen, China) “I am 51 years old and I am a T–6 complete paraplegic caused by a blood clot compression. I was shocked when I first became paralysed because I had received the wrong diagnosis from a physician in 1984. I don’t think it is easy getting into the mainstream of independent living after being disabled. In the years since my diagnosis, a lot of things have helped me come to terms with my disability.” (Nipapan, Thailand) “In early November 2002 I fell from a friend’s horse while competing at a horse trials event. I am an incomplete C6–7 with good arm control. Despite not having grip ability, my hands are functional enough to perform several tasks like holding a glass of wine (very important!) and signing my name.” (Anonymous, New Zealand)
2
A global picture of spinal cord injury Article 31 of the Convention on the Rights of Persons with Disabilities (CRPD) requires States Parties to collect statistical data that enable them to formulate and implement policies that give effect to the rights in the Convention, so that people with spinal cord injury (SCI), and other disabilities, can fully participate in all areas of society, from family life, education and employment to community and country. Valid and reliable data about SCI are essential for informed decisions about programmes and policies designed to prevent the occurrence of SCI, to improve the lives of people with SCI and to anticipate future SCI service needs. To appreciate the socioeconomic impact of SCI, a complete epidemiological picture of SCI is required, both in terms of data about the overall number of people living with SCI (prevalence), the number of new cases that arise (incidence), and the causes of SCI (see Table 2.1 for definitions of indicators). This information needs to be collected at regular intervals to make predictions about future trends. Evidence-based policy and programming at the national level also require information about the environmental factors that influence the experience of living with SCI, the socioeconomic circumstances of people with SCI, their met and unmet needs, and the costs of SCI. This chapter presents basic epidemiological information using indicators (see Table 2.1) of prevalence, incidence, mortality, causes and costs of both traumatic and non-traumatic SCI (TSCI and NTSCI) and discusses SCI data and evidence and how they can be improved. The information presented is derived from peerreviewed journal articles, governmental publications, and reports from prospective and retrospective studies using data from spinal cord injury registries, population registries, hospital admission and discharge data, and health survey data. Specifically for the report, systematic reviews were carried out of publications on the epidemiology of SCI published between January 2000 and August 2012. Meta-analysis was done where appropriate. A fuller explanation of the methodology used to assess the data and its limitations can be found in Technical Appendices A and B.
What do we know about spinal cord injury? Data on the magnitude and costs of SCI are limited. Only a handful of highincome countries are able to provide national statistics. Other data sources 13
International Perspectives on Spinal Cord Injury
Table 2.1. Examples of commonly used national, epidemiological indicators for spinal cord injury Indicator Incidence of SCI Description Incidence data reflect how many people have become spinal cord (SCI) injured in a given population over a specified period of time. It is generally reported as several new SCI cases per million population per year. Incidence is a direct measure of SCI risk. Stratified estimates of incidence rates by etiology, and further by demographic (sex, age), occupation or geographical location (urban, rural) variables may differentiate/identify risk groups, thereby informing effective prevention policy and programmes. Use and limitations Variation occurs as to whether: – population at risk (i.e. source population for SCI cases) is well defined; – case definition of SCI; – completeness of case ascertainment, which is the extent to which all the incident SCI – as defined by the case definition − is included. For instance, TSCI incidence may not include those people with SCI that died at the scene of injury; NTSCI incidence may not include people incurring SCI during end-of-life care (e.g. spinal metastasis). Prevalence is an indicator of the effectiveness of secondary prevention and the need for health care and social support.
Prevalence
Etiology
Standardized Mortality Ratio (SMR)
Case fatality rates
The numbers of people in the population living with SCI at a given time point. It is measured as number per million population. Prevalence is influenced by risk and duration of a condition and the latter is determined by recovery or death. Regular collection of data, disaggregated by age, sex and socioeconomic categories, such as occupation and wealth status, can uncover important patterns and trends in the lived experience of SCI. Absolute figure indicating the number of people that Useful for planning at the local level for are spinal cord injured by mechanism, intent, place and primary prevention, trauma care and rehabiliactivity. tation services. Useful for calculating the cost of health care. The SMR gives a standardized estimate of mortality in To determine if mortality of people with SCI is people with SCI with regard to the general population. higher or lower than in the general populaWhen the SMR equals 1.0, then there is no increased tion. risk of death for people with SCI; if larger than 1.0 then Limitation: Variation in SMR estimates there is. between populations may partly reflect variThe requirements for calculating SMR for a cohort are: ation in mortality of the general population – the number of people with SCI by age group and sex; and completeness of mortality ascertainment. – observed deaths in people with SCI; – the age- and sex-specific mortality rates of the general population. Absolute figures of the number of people who died Shows the relationship between SCI and after SCI. fatalities. If disaggregated by etiology, relevant responses can be For comparison, the information needs to identified and implemented. be standardized into the following groups: number of people with SCI, including those with TSCI that die at the incident scene; fatalities in hospital; and fatalities after discharge: 30 days, 1 year, 5 years, etc.
are so few and so methodologically varied that it is not possible to calculate reliable point estimates for global prevalence or incidence. The best available SCI data provide a general picture that is summarized below and explored in detail in the remainder of this chapter. 14
SCI is a relatively rare but life-altering and costly condition, with a mortality risk that varies widely by country income status and depends heavily on the availability of quality clinical care and rehabilitation services. It is unclear how many people in the world are currently living
Chapter 2 A global picture of spinal cord injury
with SCI, but international incidence data suggest that every year between 250 000 and 500 000 people become spinal cord injured. The majority of these cases are traumatic SCI, the leading causes of which are road traffic injuries, falls and violence. Recent studies show an increase in the age of SCI onset and a gradual increase in the proportion of non-traumatic SCI cases – partly attributable to the world’s ageing population. Current data also show that SCI is associated with an elevated risk of death. People with SCI are most at risk of death in the first year after SCI onset, but even in high-income countries where advances in care have meant that survival has improved, they still face an elevated mortality risk and are more likely to die earlier than the general population. People with SCI in lowincome countries continue to die from preventable secondary conditions that are no longer a leading cause of death in high-income countries. The costs of SCI varies widely depending on the context, and few comparable data are available. From existing data it is clear that SCI carries substantial direct and indirect costs, and that much of these costs are borne by people with SCI. The level Table 2.2. Prevalence of TSCI Country Locality Year of estimate 2008 1999
and severity of SCI have a significant influence on cost. Direct costs appear to be highest in the first year after SCI onset and, over a lifetime, indirect costs are likely to exceed direct costs. There is an urgent need to improve the quantity and quality of data collection on SCI. Issues with SCI data and recommendations for improving the evidence are discussed at the end of this chapter.
Prevalence of spinal cord injury Data on the prevalence of SCI are important for gauging demand for health care and social support, and for assessing the impact of secondary prevention measures; unfortunately, data on the prevalence of SCI are sparse. Currently there are no reliable global or regional estimates of all-cause SCI prevalence. Estimates from six countries are presented here (see Tables 2.2 and 2.3). Some estimates found in the literature are not included because they either suffer from methodological problems or are considerably older and may not reflect the current situation.
Study design and reference population Prospective, cross-sectional, national registry Retrospective, registry of hospital data
Paediatric /adult SCI Adult, paediatric Adult, paediatric
Prevalence per million population 440 280
Islamic Republic Tehran of Iran Finland Käpylä Rehabilitation Centre, Helsinki; Helsinki University Central Hospital, Helsinki Norway Hordaland and Sogn og Fjordane counties Iceland Landspitali University Hospital, Reykjavík Canada Nationwide
2002 2009 2010
Australia Sources (1– 6).
Nationwide
1997
Retrospective, longitudinal/ cohort using hospital data Retrospective, longitudinal/ cohort using hospital data Retrospective, cross-sectional, national registry, modelling study Retrospective, national registry, modelling study
Adult, paediatric Adult, paediatric Adult, paediatric Adult
365 526 1298
681
15
International Perspectives on Spinal Cord Injury
Table 2.3. Prevalence of NTSCI Country Canada Australia Locality Nationwide State of Victoria Year 2010 2010 Study design and reference population Retrospective, cross-sectional; national registry Retrospective, cross-sectional, national registry Paediatric / adult SCI Adult, paediatric Adult, paediatric Prevalence per million population 1227 367 (455 for adults 16 years and over)
Sources (1, 7 ).
Canadian data yield an overall SCI prevalence rate (traumatic and non-traumatic combined) of 2525 per million population, or 85 000 people, in 2010. Age-specific prevalence estimates of SCI in Canada indicate that TSCI is concentrated in younger populations while NTSCI is concentrated in older age groups (see Figure 2.1). TSCI prevalence figures (see Table 2.2) range from 280 per million population in Finland (5) to 1298 per million in Canada (1), although this variation is more likely due to differences in methodology than to a true fivefold difference in prevalence. The Australian and Canadian prevalence estimates derive from a modelling technique that incorporates incidence data
and information on disease duration. The higher rates in Canada might be indicative of a North American trend or it may be that current best-evidence assumptions used in Canada lead to overestimation of incidence while those employed in Australia underestimate the incidence rate. The other countries present available data from hospital and national registries and cross-sectional and longitudinal studies. To better understand prevalence estimates between these countries, more data are needed regarding demographic differences, both cause-specific incidence rates by age and sex and associated life expectancies, information that is not currently available.
Figure 2.1. Age-specific prevalence estimates of SCI in Canada for 2010 6000 5000 4000 3000 2000 1000 0 0–4 TSCI 5–9 10–14 15–19 20–24 25–29 30–34 35–39 40–44 45–49 50–54 55–59 60–64 65–69 70–74 75–79 80–84 85–89 90+ Age NTSCI Age pro le of 2010 Canadian population 3 000 000 2 500 000 2 000 000 Population 1 500 000 1 000 000 500 000 0
Source: Adapted from (1) with permission from S. Karger AG, Basel.
Annual cases
16
Chapter 2 A global picture of spinal cord injury
NTSCI prevalence data (see Table 2.3) are available only for Australia (367 per million population) and Canada (1227 per million population) (1, 7). The Australian data are drawn from a study in the state of Victoria, based on life expectancy and national rehabilitation outcomes data, and extrapolated to the rest of the country (7). The results show a prevalence of 455 per million population for adults 16 years and above, suggesting that ageing demographics may be the primary driver for increasing NTSCI prevalence. The higher Canadian prevalence estimates may be a result of the assumptions made in the study rather than a true difference in prevalence.
Traumatic spinal cord injury Given the available data, it is not possible to derive meaningful regional point estimates for the incidence of TSCI. Statistical modelling is precluded because of the lack of reliable predictors. Country-level TSCI incidence rates vary widely across the world – from 13 to 53 cases per million population, as illustrated by Figure 2.2. TSCI incidence rates tend to be higher in North America than in Europe, possibly due to higher rates of violence in the USA. Incidence data from other regions either do not exist or fluctuate too widely between and within countries that it is difficult to provide valid summary statistics. For example, data from the Municipality of Beijing in China show a high of 60.6 per million (21), while the region of Tianjin reports an incidence of 23.7 per million (22).
Incidence
Incidence of spinal cord injury Estimated global SCI incidence is 40 to 80 new cases per million population per year, based on quality country-level incidence studies of spinal cord injury from all causes. This means that every year, between 250 000 and 500 000 people become spinal cord injured. Studies that report incidence data for both traumatic and non-traumatic causes of SCI provide information about the overall constitution of SCI populations. This information is important to collect since the resource needs and characteristics of traumatic and non-traumatic populations are different. The proportion of TSCI varies within a wide range and appears to differ across regions (8–11). Historically, up to 90% of SCI has been traumatic in origin, but data from the most recent studies indicate a slight trend in recent years towards an increase in the share of NTSCI (12). The NTSCI population is generally older, with progressive diseases requiring more expensive care, although for a shorter period. Most studies of SCI incidence cover either TSCI or NTSCI, perhaps because of differences with data sources and data collection methods. The incidence and etiology of TSCI and NTSCI are therefore examined separately below. Data for NTSCI are limited compared to those for TSCI.
Figure 2.2. Global variation in country-level estimates of annual incidence of TSCI Reference
Canada Estonia Iceland Spain France Australia Finland Ireland Qatar Netherlands 0 10 20 30 40 50 60 Crude annual incidence per million population
a b c d e f g h i j
Sources: a (1); b (13); c (2); d (14); e (15 ); f (16); g (17 ); h (18); i (19); j (20).
17
International Perspectives on Spinal Cord Injury
The considerable country-level variations in TSCI incidence are due to several factors: ■ Genuine country-level differences in incidence related to differences in risk. ■ Differences attributable to methodological approaches. ■ The population (adults, children or both) under study. TSCI in children is low. Studies reporting only adult incidence overestimate the overall population rate and make comparison difficult with studies reporting merged adult and child incidence data. ■ Representativeness of the data. With the exception of a few countries that have a country-wide SCI registry system, such as Finland, incidence estimates are extrapolated from city or regional data that may not be representative of the country as a whole. Despite these variations, a few trends emerge from the TSCI country-level incidence data: 1. Incidence of TSCI is decreasing in some countries, but staying stable or increasing in others. Studies in the USA, Finland and Australia have noted a decrease in incidence of TSCI resulting from road traffic crashes. However, this result is not evident in all developed countries. Data from two Norwegian counties showed a steady increase in the incidence of TSCI by decade between 1952 and 2001, from 9.9 to 34.5 per million in men and from 1.9 to 8.2 per million in women (3). Although France has shown a marked decrease in the incidence of road traffic crash fatalities, the incidence of SCI has remained stable (23). This reflects a changing profile, with the incidence of SCI for car users dropping but the incidences for motorcyclists, pedestrians and cyclists increasing. 2. There are consistently higher incidence rates of adult TSCI among males. Whereas paediatric studies typically report a balanced male-to-female ratio (24, 25), adult studies mainly show a minimum male-to-female ratio of 2:1, with some reporting much higher rates. For example, excessively high male-to-female 18
Figure 2.3. Distribution of TSCI by sex and age group 100 80 60 40 20 0
Proportion of SCI population (%)
0–5 Male
6–12 Female
13–15 Age group
16–21
22+
Sources (27, 28).
ratios have been reported in the Thessaloniki region of Greece (7.3:1) (26), Ireland (6.7:1) (18), Qatar (8.3:1) (19), and Stockholm, Sweden (3.3:1) (26).) TSCI incidence data from the USA show that males have higher rates of TSCI across all age groups, with a peak from ages 16 to 21, with 82% of TSCI cases in this age group occurring to males (see Figure 2.3). These results support the view that SCI incidence is in part a function of gender roles – alcohol consumption, driving behaviour and participating in high-risk sports – that manifest after childhood (13, 29–31). 3. TSCI is most likely to occur in young adults and the elderly. Two common age-associated peaks occur in TSCI incidence rates– in young adults (males: 20–29 years; females: 15–19 years) and in older people (males 70+; females 60+), see example of age- and sex-specific TSCI incidence rates for Canada in Figure 2.4 (1). The increased incidence after age 65 is a pattern only recently observed. A study in Canada showed a 51.4 per million incidence for people over 60 (32), which is supported by studies in China and Australia (16, 33). In Australia over the past 25 years the proportion of SCIs among people 65 and older
Chapter 2 A global picture of spinal cord injury
Figure 2.4. Age- and sex-specific incidence rates for TSCI in Canada 140 Annual TSCI incidence per million population 120 100 80 60 40 20 0 0–4 5–14 15–19 20–29 30–39 40–49 50–59 60–69 70+
Male
Female
incidence of nearly 20 per million (37). Studies typically show intermediate incidence rates for adolescents and middle-aged adults (1–3). There is some evidence that age at time of injury is increasing. In Norway, for example, the mean age of TSCI increased from 40.2 years to 48.9 years between 1952 and 2001, with the greatest change in average age at injury seen among women – an increase from 24.7 years to 57.7 years (3).
Etiology
Age group
Source (1).
has increased from 4% to 12% (34). These findings reflect the higher incidence of falls among the elderly (see Figure 2.4 and Figure 2.7). Paediatric TSCI incidence rates are low (e.g. 4–8 per million) in most countries for which there are estimates (24, 25, 36), with the notable exception of the USA, where one study reports a paediatric TSCI Figure 2.5. Distribution of TSCI by WHO region 80 60 Percent of cases 40 20 0
Based on available evidence on the etiology of TSCI across WHO regions, the three most common causes are transport (road traffic crashes in particular), falls and violence (see Figure 2.5). While the summary estimates in Figure 2.5 capture regional differences, they may not adequately illustrate country-level variation in causes or the context of the injury. Road traffic crashes are the leading cause of TSCI. In the African Region, transport accounts for nearly 70% of cases. In the other WHO regions transport, as a percentage of all cases, ranges from 40% in the South-East Asia Region to 55% in the Western Pacific Region. A study in Mississippi, USA showed that seat-belts were
African Sports Assault
Americas Transport
Eastern Mediterranean Fall Other
European
South-East Asia
Western Paci c
Unspeci ed or unknown
Note: The numbers of countries providing data for regional summary are as follows: African 3 countries; Americas 4; Eastern Mediterranean 5; European 13; South-East Asia 3; and Western Pacific 3 countries. Sources: African – (38 – 45 ); Americas – (12, 30, 32, 35, 46 –52); Eastern Mediterranean – (4, 53–56); European – (2, 3, 9, 13, 17, 18, 20, 26, 57– 67 ); South-East Asia – (68 –72); Western Pacific – (16, 21, 22, 34, 73– 80).
19
International Perspectives on Spinal Cord Injury
Figure 2.6. Etiology of SCI by age group (in young people) 80 60 Percent of cases 40 20 0 0–5 6–12 13–15 Age group Sports Assault Transport Fall Other Medical/surgical 16–21 22+
Sources (27, 28).
not available or not used in at least 75% of vehicle crashes resulting in SCI (31). Similarly, a study of SCI in Nigeria reported that none of the 63 reported traffic-injured patients used a seat-belt (38), which illustrates the importance of seat-belt use to reduce SCI among vehicle occupants (see Chapter 3 for further details). Falls are the second leading cause of TSCI. Falls account for just over 40% of all cases in the Eastern Mediterranean and South East Asia Regions. For example in Nepal a study reported that 40% of spinal injuries resulted from falls from trees while cutting leaves for fodder and 28% resulted from falls from buildings (81). The African Region reports the lowest percentage (14%) of falls, with the other WHO regions showing percentages between 27% and 36%. Violence, including self-harm, is the third most common cause of TSCI. The relative proportion of violence as a cause of TSCI varies considerably, with the Americas, African and Eastern Mediterranean Regions reporting the highest percentages of 14%, 12% and 11%, respectively. Some country-specific data – notably from countries affected by war – show much higher rates, such as Afghanistan, which reports 60% of all cases of TSCI being related to violence (56). The percentage of violence-related TSCI cases is also 20
high in Brazil at 42% (10), Turkey at 25% (64), and South Africa at 21% (44). In the USA, 11.7% of SCI cases are caused by firearms (82), with as much as 28% due to firearms among some age and ethnic groups (27). Western European averages are around 4% (59), and some countries such as Norway, Canada and Australia report an average of less than 2% (3, 16, 30). Finally, attempted suicide has been shown to contribute to over 10% of TSCI cases in Israel and Finland (5, 8). Across all regions, sport and leisure activities contribute less than 10% of all cases of TSCI, with the Region of the Americas reporting the highest percentage of sport-related TSCI (8%). However, in some cases country-specific data show higher rates, such as 28% in the USA (27), 25% in the Republic of Korea (83) and 22% in France (84), or lower rates such as in Nigeria where sports contribute only 1.7% of all TSCI cases (43). Causes of TSCI may also be related to activities, places and circumstances. Work-related injuries contribute to at least 15% of all TSCI cases (2, 8, 16, 18, 26, 60, 85). Alcohol or drug use has been identified as a contributing factor to TSCI in 34% of all cases in British Columbia, Canada (30) and 34% of all transport-related trauma in Mississippi, USA (31).
Chapter 2 A global picture of spinal cord injury
Figure 2.7. Etiology of SCI by age group (all age groups) 80 60 Percent of cases 40 20 0
<15
16–30
31–45 Age group
46–60
61–75
76–99
Sports
Assault
Transport
Fall
Other
Unspeci ed or unknown
Source (35 ).
Age and sex influence the etiology of TSCI throughout the life-cycle. Drawing on data of SCI among children and young adults in the USA (see Figure 2.6) – data that are supported in the literature from other countries – medical and surgical causes of SCI are most prevalent under the age of one year. Between birth and five years of age, four-wheeled motor vehicle crashes account for as much as 65% of all TSCI cases (28). Transport (i.e. road traffic crashes) remains the most common cause of TSCI among children and young adults, accounting for a higher percentage of SCI in girls than for boys. Violence is shown to cause more SCI among males in all age groups, although these differences are statistically significant only in ages above five years. Sports cause more TSCI in boys than girls after the age of 13 years. These trends are reflected in data from other countries with a couple of exceptions. Two studies of children with a mean age of nine showed higher rates of violence and assault in Brazil and higher rates of falls in the United Kingdom (10, 86). While transport remains a significant cause of SCI in all age groups, falls become the most common cause after the age of 60, as seen in Figure 2.7 in US data taken from the 2011 National Spinal Cord Injury Statistical Center
Demographic trends
(NSCISC) Annual Statistical Report (35). A study from China, which looked specifically at the height of falls, found that high falls were more common for those between 15 and 44 and that low (less than a metre) falls were most common for people over 45 (80), as shown in Figure 2.8. Figure 2.8. Distribution of etiology by age group in China 80
60
Etiology (%)
40
20
0 15–24 25–34 35–44 45–54 Age (years) Low fall Other 55–64 ≥65
MVCs Falling objects
High fall
Note: MVCs = Motor vehicle crashes Source: Reproduced from (80) with permission from Maney Publishing.
21
International Perspectives on Spinal Cord Injury
Non-traumatic spinal cord injury There are far fewer studies on NTSCI incidence than TSCI incidence, with the exception of specific studies on spina bifida (see Box 2.1). Global and regional incidence rates cannot be estimated because existing studies are not representative or comparable, owing to methodological issues such as different inclusion/exclusion criteria, incomplete case ascertainment, or inadequacies in reporting population at risk (87). The NTSCI incidence rate in Canada is estimated to be 68 per million (1). Australian estimates, using data from the State of Victoria, report an incidence of 26 per million (87–89). Data from a hospital with a specialized SCI unit in Spain (90) report 11.4 per million. The incidence of NTSCI varies by both age and sex. As with TSCI, incidence rates of NTSCI are higher among males than females. In contrast to TSCI, NTSCI incidence increases steadily with age (see Figure 2.9 for example), with risk probably influenced by the increase of ill health with increasing age. Since NTSCI is more common in older age groups (89), and given global ageing, Figure 2.9. Age- and sex-specific incidence rates for NTSCI in Australia 140 Annual NTSCI incidence per million population 120 100 80 60 40 20 0 15–24 25–34 35–44 45–54 55–64 65–74 75–84 85+ Age group Male Female
Incidence
NTSCI incidence will increase and may overtake that of traumatic TSCI in the next decades (7).
Etiology
There are few reliable national data concerning the etiology of NTSCI, but studies suggest that the leading causes are neoplastic tumours and degenerative conditions of the spinal column, followed by vascular and autoimmune disorders (11, 59, 62, 122–124). In countries such as India, Peru and Sweden, where there are high levels of tuberculosis and other infectious diseases, these dominate all causes of NTSCI except tumours (123, 125, 126). Congenitally and genetically caused cases such as spina bifida are not recorded in these studies, as these are typically collected in different settings.
Mortality and life expectancy This section summarizes what is known about the impact of SCI on mortality risk and life expectancy – essential information for effective planning and resource allocation. Improvements in SCI recognition, evaluation, pre-hospital management, trauma care services, general clinical care and rehabilitation service have resulted in longer life expectancy for people with SCI in high-income countries, alongside a decreased risk of mortality from secondary conditions. People with SCI remain more likely to die – and to die earlier – than people without SCI. They are also more likely to die from certain health conditions than people in the general population. In most cases, the first year after injury holds the highest risk of death for people with SCI, and many people with SCI in low-income countries are dying from preventable secondary conditions. People with SCI die earlier than people without SCI. Overall, studies have indicated that people with SCI are 2 to 5 times more likely to die prematurely than people without SCI (see Table 2.4). Another way to assess the effect of SCI is to consider its impact on life expectancy, how long a life someone can expect to live. Few
Source (89).
22
Chapter 2 A global picture of spinal cord injury
Box 2.1.
Spina bifida incidence
The majority of studies estimate spina bifida incidence to be between 2 and 12 per 10 000 live births. A few studies indicate much higher rates, including those from Oman (32 per 10 000) and China (58 per 10 000). A meta-analysis carried out for this report found an overall incidence rate of spina bifida of about 4.5/10 000 (95% CI: 3.7–5.3) in studies that use live birth data, while those that use live and stillbirth data or live, stillbirth and termination of pregnancy (TOP) data reported incidence rates of about 10.0/10 000 (95% CI: 8.1–11.8) and 9.1/10 000 (95% CI: 6.7–11.4), respectively (see Technical appendix C for methods and terminology used). It would be reasonable to expect that country studies reporting incidence rates based on live, stillbirth and TOP data would have higher incidence rates. However, as illustrated in the figure below, this is not the case. This may be due to the variation in data sources used for calculations, as well as the variation between countries of spina bifida incidence.
Spina bifida incidence Country Live births United States Peru Malawi Saudi Arabia Turkey Brazil Israel Congo, Dem. Rep. SUBTOTAL Live and stillbirths Oman Sweden Costa Rica Czech Republic Mexico Wales, United Kingdom Canada Chile Argentina Cameroon Australia South Africa Iran, Islamic Rep.* Spain* China* SUBTOTAL Live births, stillbirths, and termination of pregnancies Australia China Sweden Norway United Kingdom Russian Federation SUBTOTAL
Reference a b c d e f g h
i j k l m n o p q r s t u v w
Note: This figure is a Forest plot that provides a graphical summary, plus the summary statistic, of a meta-analysis on incidence rates of spina bifida as reported globally. The data used in the metaanalysis were extracted from studies identified in a systematic review of relevant literature. The size of the grey squares for each study is proportional to the weight assigned to the study for the meta-analysis. Each study is shown with 95% confidence intervals, depicted by black horizontal lines going through the point estimates of spina bifida incidence. The summary incidence rate of spina bifida is represented by the diamond shape, whose width represents the 95% confidence interval, centred on the summary statistic. Note: * = subgroup meta-analysis Sources: a (91); b (92); c (93); d (94); e (95 ); f (96); g (97 ); h (98); i (99); j (100); k (101); l (102); m (103); n (104); o (105 );p (106); q (106); r (107 ); s (108); t (109); u [(110); (111)]; v [(112); (113)]; w [(114); (115 ); (116)]; x (117 ); y (118); z (119); aa (120); ab (121); ac (120).
x y z aa ab ac
0 10 20 30 40 50 60 70 Spina bi da incidence / 10 000 pregnancies
23
International Perspectives on Spinal Cord Injury
studies compare people with SCI to the general population. However, one Australian study showed that individuals with a spinal cord lesion level between C1 and C4 have only 70% of the life expectancy of the general population at the age of 25 (see Figure 2.10) (34). The first year after injury has the highest risk of mortality for people with SCI (57, 129). Among people with SCI, mortality risk depends on the level and severity of the injury. Tetraplegics die earlier than paraplegics (34, 127, 130). A Finnish study found that the SMR for paraplegia was 2.3 as compared to 3.0 for tetraplegia (127), while in Australia the SMR for paraplegia is 1.7 as compared to 2.2 for tetraplegia (34). The Finnish study also showed that mortality is higher in people with complete lesions as compared to incomplete, with a complete injury nearly doubling the mortality rate of people with paraplegia, and nearly tripling it for those with tetraplegia (127). In developed countries life expectancy has increased since the 1950s. Longitudinal studies in high-income settings have shown a steady increase in life expectancy for people with SCI. A study in the USA on TSCI observed a 40% decrease in mortality between 1973 and 2004 during the first 2 years post-injury, while mortality beyond 2 years post-injury remained fairly stable (131). Similarly, between 1981 and 1998 a study showed there was a 3% annual decrease in TSCI mortality rate; in particular mortality rates declined among males, whites and victims of motor vehicle crashes (132). This progression reflects the improvements in clinical care and
Figure 2.10. Life expectancy in Australia by attained age for people with SCI in comparison to general population 100 95 90 Life expectancy (%) 85 80 75 70 65 60 55 50 25 35 45 Age (years) All D (%) T1–S5 ABC (%) C5–8 ABC (%) C1–4 ABC (%) 55 65
Note: A: complete paralysis; B: sensory function only below the injury level; C: incomplete motor function below injury level; D: fair to good motor function below injury level. Source (34).
rehabilitation medicine for people with SCI over the past 60 years. Secondary conditions of SCI are no longer the main cause of death of people with SCI in high-income countries. In high-resource countries, there has been a shift in principal causes of death from urologic complications, such as urosepsis or renal failure, to causes of death similar to the general population, such as respiratory problems, especially pneumonia and influenza (11, 50, 130, 133, 134). Some studies have found high rates
Table 2.4. Standardized mortality ratios for TSCI in four countries Country Finland Norway Estonia Australia Sources (127–129). Locality Helsinki Hordaland and Sogn og Fjordane counties Nationwide Nationwide Years 1976–2005 1997–2001 1997–2001 1986–1997 Paediatric/adult TSCI Adult Adult and paediatric Adult and paediatric Adult SMR 2.7 1.9 5.0 2.1
24
Chapter 2 A global picture of spinal cord injury
of mortality caused by heart disease, suicide, and neurological problems (11, 50, 127, 130, 133). People with SCI however die of these conditions more frequently than people in the general population. For example findings from a study in Norway indicate an overall increased mortality risk from respiratory diseases among SCI cases compared to the general population, with a SMR of 1.96 (135). In Australia, a study found a causespecific SMR of 17.11 for pneumonia and influenza, 4.37 for suicide, and 6.84 for diseases of the urinary system (34). One Norwegian study found respiratory disease, ischaemic heart disease, cancer and suicide as the most common causes of death (57). In low-income countries, people with SCI continue to die from preventable secondary conditions, e.g. urologic complications and pressure sores. In low-resource countries, although there are few data because of the extremely high rate of “lost to follow-up” (41), anecdotal evidence indicates that urologic complications remain a common cause of death (136). Fatal infections from untreated pressure ulcers, because of the absence of adequate medical care, are a common cause of death in low-income countries (45, 136).
Mortality rates among people with SCI are strongly affected by the capacity of the healthcare system, especially emergency care. Transportation and time of admission post-injury are important factors affecting survival. The first 24 hours after a SCI are the most critical for survival. A study in Nigeria found that predictors of mortality after 6 weeks include being in a crouched position during transfer (odds ratio of 23.52), and presenting 24 hours or more post-injury (odds ratio of 5.48). While overall in-hospital mortality in the high-resources settings of Canada and the USA are 11.6% and 6.1%, respectively (137, 138), Sierra Leone has an average mortality rate of 29% (45) and Nigeria of nearly 35% (41). This underscores the importance of quick recognition, early evaluation and appropriate management of suspected SCI (139). In a large retrospective study of the outcomes of 324 patients in Australia who had been transported by ambulance and admitted to a SCI unit, it was only because the ambulance crews had been trained to spot vital physiological signs of SCI that these patients were directed to a SCI unit, where nearly 88% were diagnosed as SCI ((75), see Box 2.2). Generally, mortality rates in hospitals reflect the
Box 2.2.
Appropriate pre-hospital management in the immediate post-injury period reduces deaths and secondary complications
A large retrospective study in Australia of the outcomes of 324 patients who had been transported by ambulance and admitted to a spinal cord injury unit was conducted between 2004 and 2008. Most individuals, at the scene of the injury, had vital physiological measurements that were within normal limits, but because of the nature of the injury were treated by the ambulance crew as potentially SCI. This protocol saved many lives as 88% were diagnosed as SCI when admitted to a spinal cord injury unit. The median time to reach the injury unit post-injury was under 12 hours. However, if first admitted to a general trauma centre, it often took more than 24 hours before the patient was treated by SCI specialists, and these individuals were 2.5 times more likely to develop secondary complications compared with those admitted directly to the injury unit. Significantly, the study also showed that when the injury was caused by a low fall, the patients were invariably older but were much less likely to be treated by the ambulance crew as potentially spinal cord injured. This increased inter-facility transfers so that less than half of this group reached the spinal cord unit within 24 hours and suffered a substantially higher rate of death and secondary complications. Given the increasingly ageing population and the increase in incidence of SCI from age-related low falls, the study suggests that injuries from low falls among the elderly should be more cautiously accessed as potentially SCI. Source (75 ).
25
International Perspectives on Spinal Cord Injury
importance of good quality care for the survival of people with SCI, and these rates may be linked to the overall resource level of the country.
Costs of spinal cord injury The costs of SCI – direct and indirect – are important in assessing the economic and social impact of SCI. Direct costs can include health and rehabilitation services, more expensive transportation options, special diets, and personal assistance. Indirect costs, both economic and non-economic costs, can include lost productivity due to premature death or disability, social isolation and stress. The cost of SCI is influenced to a large extent by the following factors: ■ The nature of the initial injury or underlying health condition. For TSCI, cost is affected by the level and severity of the lesion (140 –144), and for NTSCI it is influenced by the severity of the underlying health condition (145, 146). ■ The timeliness of treatment, notably the length of time between the injury and first appropriate medical response. ■ The length of stay in the hospital – including initial admission (146) and any re-hospitalization caused by a failure to prevent or manage the health consequences of secondary conditions. Evidence suggests that there are no gender-based differences in cost (147). ■ Direct medical costs – including wheelchairs and ventilators. Care must be taken in comparing cost data across countries. Direct country comparisons of the “cost estimates of SCI” are difficult. Different categories of direct and indirect costs are used and estimates of costs rely on different statistical techniques and data of variable quality. Even within a country, estimates of direct health care costs vary depending on the source of data (148–150). A general picture of the costs of SCI emerges from available data, even if no regional or global estimates can be calculated: 26
1. The level and severity of the injury have an important influence on costs, with higher costs associated with injuries higher up on the spinal cord (e.g. tetraplegia versus paraplegia), and higher costs associated with complete SCI compared to incomplete SCI. 2. The costs of NTSCI tend to be lower than those for TSCI, largely because of age of onset. 3. Direct costs are highest in the first year after SCI onset and then decrease significantly over time. 4. Indirect costs, in particular lost productivity, may exceed direct costs. 5. Much of the cost is born by people with SCI. These points are discussed in greater detail below. 1. The level and severity of the injury have an important influence on costs (134, 151, 152). Tetraplegia is associated with higher costs than paraplegia (42, 153, 154). Data from the National Spinal Cord Injury Statistical Center in the USA estimated that in 2013, lifetime costs for a person injured at age 25 are US$ 4.6 million for high tetraplegia compared to US$ 2.3 million for paraplegia. In Australia the lifetime costs per incident case were estimated to be 5.0 million Australian dollars for a person with paraplegia and 9.5 million for tetraplegia (154). This Australian study also compared costs across a range of neurological conditions, such as dementia, multiple sclerosis, cerebral palsy and bipolar disorder, and found that the costs associated with tetraplegia were between 2 and 20 times higher than those for the other conditions (154). In terms of severity, some studies have found that costs are higher for complete SCI compared to incomplete SCI. For example, data from Canada on average direct costs, which included hospitalizations, physician services, home care, and long-term care, found that mean attributable costs in the first year were $121 600 (2002 Canadian dollars) per person with a complete SCI, and $42 100 per person with an incomplete injury. In
Chapter 2 A global picture of spinal cord injury
the subsequent 5 years, annual costs were $5400 and $2800 for people with complete and incomplete SCI, respectively ((144), see Figure 2.11). 2. The costs of NTSCI tend to be lower than those for TSCI, largely because of age of onset. NTSCI typically affects older populations who incur fewer indirect costs over their remaining life, primarily because they are no longer in the workforce. The exception to this is spina bifida, not only because it begins in infancy, but also because of high expenditures in developmental and behaviour services and home health services (155 –157). 3. Direct costs are highest in the first year after SCI onset and then decrease significantly over time (134, 151, 152). The National Spinal Cord Injury Statistical Center Database in the USA estimates of care costs in 2013 are given in Table 2.5. The on-going costs of aids and equipment and long-term care, such as assisted accommodation, respite care, personal assistance, and supported community services, tend to be high even after the initial high direct health care costs begin to decrease (154). Figure 2.12 illustrates this cost development for tetraplegia in Australia. 4. Indirect costs may exceed direct costs. Although direct medical and rehabilitation costs are expensive and are increasing (158), indirect costs, and especially costs associated with loss of productivity across the lifespan, can be well in excess of all direct expenditure (159). A study of acute care costs (over 6 weeks) in 34 individuals
Figure 2.11. Direct annual health care costs per person by level and severity of SCI for people injured in Alberta, Canada, 1992−1994 (2002 Canadian dollars) Year 1 150 900 Years 2–6
Canadian dollar
104 600
53 600
45 700 15 800 24 700
35 000 16 000
47 200
6 800
Tetraplegia Tetraplegia complete incomplete
Thoracic complete
Thoracic Lumbar/ incomplete Cauda equina
Source (144).
with SCI in Nigeria found a 6-fold difference between the mean direct care costs (an average of US$ 239 including nursing and medical care, including operative procedures, accommodation, medication and laboratory charges), and the indirect costs (US$ 1360, including the sum of income lost and costs of vehicle replacement and repair) (42). The total cost of the treatment represented more than 50% of the annual income of the patient (42).
Table 2.5. Average yearly expenses of TSCI by severity of injury Severity of Injury High tetraplegia (C1–C4) Low tetraplegia (C5–C8) Paraplegia Incomplete motor functional at any level Source (153). Average yearly expenses (2013 US$) First year 1 044 197 754 524 508 904 340 787 Each subsequent year 181 328 111 237 67 415 41 393
27
International Perspectives on Spinal Cord Injury
Figure 2.12. Direct mean annual cost over time by cost type, tetraplegia 140 000 Mean annual cost (Australian dollars) 120 000 100 000 80 000 60 000 40 000 20 000 0 1 2 3 4 5 6 Years post-injury Health-care costs Equipment and modi cations Long-term care
SCI. This section discusses issues and concerns related to SCI data and evidence, with a more detailed explanation of data limitations found in Technical appendix B. Data on SCI may be obtained from information sources specific to SCI or may be related to general disability data collection with links to external causes of injury. The source, data type and standard/tool for information collection are discussed below and outlined in Table 2.6.
Data sources Health settings. A wide variety of health settings can be the source of SCI data, including patient records from hospital inpatient services, ambulance services or emergency departments, health clinics and family doctors. Health setting data are only relevant to the population served by these services and may not be representative of the overall SCI population of the country. Central registry of people with SCI. Some high-income countries have established a central registry of spinal cord injuries that applies scientific criteria for the collection, management and analysis of SCI information, for example the Rick Hansen Spinal Cord Injury Registry in Canada (see Box 2.3), the Australian Spinal Cord Injury Register (162) and the Spinal Cord Injury Model database administered by the National Spinal Cord Injury Statistical Center in the USA (163, 164). These registries have varying degrees of representativeness. No low- or middle-income country currently has a national SCI registry. National surveys. National disability data come from censuses or population health and social surveys, which all rely on self-reporting. Although these surveys usually ask questions about mobility, if the data are not disaggregated by impairment or health condition these surveys will have limited value for SCI-specific information. Several tools exist or are under development that can support national data collection. These include the questions developed by the Washington Group on Disability Statistics, those in
Source (154). © VNI, based on TAC data for the years 2004–2008 The Report by Access Economics Pty Limited for the Victorian Neurotrauma Initiative June 2009 entitled “The economic cost of spinal cord injury and traumatic brain injury in Australia” quoted above is not an official publication of WHO. This and other related publications are available free of charges by visiting www.tac.vic.gov.au.
5. Much of the cost is born by people with SCI. The Victorian Neurotrauma Initiative calculated the total annual cost of SCI for Australia to be nearly AUS$ 2 billion (1.3 billion for tetraplegia and 689.7 million for paraplegia), 40% of which was paid by the SCI individuals themselves. The state government covered 44% and the federal government a further 10% of the costs (154).
Data and evidence for spinal cord injury It is important to advance knowledge on people with SCI and strengthen the evidence base for prevention, support and care of people with 28
Chapter 2 A global picture of spinal cord injury
Table 2.6. Source, data type and standard/tool for collection of information on SCI Source Health settings Type of data Age at injury Sex Injury Neurological level and extent of lesion (paraplegic, tetraplegic, complete, incomplete) Costs of treatment Age at injury Sex Race, ethnicity Occupation status Etiology Neurological level and extent of lesion (paraplegic, tetraplegic, complete, incomplete) at discharge Type of residence the person is discharged to Length of stay in hospital Costs of treatment Causes of death Census National health and social surveys National disability survey Age at injury Sex Etiology of injury Neurological level and extent of lesion (paraplegic, tetraplegic, complete, incomplete) at discharge Occupation status Cost of claim Standards/tools for information collection ICD ASIA/ISCoS International SCI Data Sets SHA
Central registry
ICECI ASIA/ISCoS International SCI Data Sets SHA ICD
National surveys Insurance firms
Washington Group 6 Questions (Census only) WHO Disability Assessment Schedule WHO and World Bank Model Disability Survey
Box 2.3.
An example of a SCI registry
The Rick Hansen Spinal Cord Injury Registry is a Canada-wide database of patients admitted to 31 major trauma and rehabilitation facilities across all provinces. Currently NTSCI and incomplete TSCI (D) cases are not captured as they are often treated in community hospitals not covered by the Registry. The Registry is funded by the Canadian and provincial governments, participating registry sites and the Rick Hansen Foundation. Diverse funding sources provide a consistent and dependable funding base, which is the key to a sustainable registry. Each participating facility recruits patients, obtains their consent and collects data stored centrally in an anonymous format. A total of 260 data elements from pre-hospital, acute and in-patient rehabilitation, and post-discharge to the community are collected along with sociodemographic factors, medical history, injury details, diagnosis and interventions, neurological impairment, complications and patient-reported outcomes. Participants are contacted 1, 2, 5 and 10 years post-discharge and then every 5 years thereafter to complete an outcome questionnaire. Data elements are aligned to the International Core Data Sets and the International Standards for Neurological Classification of SCI and linked to other registries to prevent duplication. The Registry has improved clinical care by:
■■ standardizing assessment and coding in clinical procedures enhancing comparability of outcomes; ■■ identifying trends over time for staffing requirements; ■■ providing staff and patients with information during community follow-up assessments.
continues … 29
International Perspectives on Spinal Cord Injury
… continued The Registry has also facilitated clinical research by:
■■ ■■ ■■ ■■
identifying individuals interested in participating in research studies; reducing respondent burden by supplementing information for clinical trials; providing a feasibility assessment of facilities participating in clinical trials; showing how patients flow through the Canadian health-care system and the differences in care provided and funded between provinces.
Sources (160, 161).
the WHO World Health Survey, and the proposed questions in the Model Disability Survey currently under development by WHO and the World Bank. Insurance firms provide insurance coverage against several risks, such as poor health, vehicle crashes, occupational and sports injuries. Insurers collect and use statistics to help estimate the rate of future claims based on a given risk, including, where relevant, the number of new and existing cases of SCI. These data are used as a basis for determining premiums and hence may be hard to obtain.
Information standards There are three main generic health information standards relevant to SCI. The most widely used standard diagnostic tool is the International Classification of Diseases (ICD), which can be used to classify diseases and other health problems for health and vital records, including death certificates and health records, and monitor the incidence and prevalence of diseases. In many countries ICD-based records are also used for reimbursement and resource allocation decision-making (165). The International Classification of External Cause of Injury (ICECI) is used to describe, measure and monitor the circumstances of occurrence of injuries including the mechanism of injury, the objects or substances producing injury, place of occurrence, activity when 30
injured, the role of human intent, use of alcohol and other psycho-active drugs. It also has other modules for collecting data on violence, transportation, place, sports and occupational injury. The System of Health Accounts (SHA) is a standardized framework for collecting internationally comparable health financial accounts, organized by intervention, for public and private sector applications (166). There are also three SCI-specific standardizations. The American Spinal Injury Association (ASIA) International Standards for Neurological Classification of SCI is a standard for assessing and classifying the neurological level and extent of SCI. The classification system contains three elements: ASIA Impairment Scale (AIS A-E); motor score (based on the neurological examination of muscle function); and sensory score (based on the neurological examination of sensory function). This standard recently revised jointly by ASIA and ISCoS, provides reliable data for clinical care and research studies (167–170). The International Spinal Cord Injury (SCI) Data Sets were developed by ISCoS to facilitate comparisons of injuries and outcomes between patients, centres and countries (171, 172). The Data Sets include the International SCI Core Data Set (173) and the International Spinal Cord Injury Non-traumatic Data Sets (174). These are the primary data sets for the standardization of basic epidemiological data, including SCI etiology, and its reporting (175). Relevant here is the
Chapter 2 A global picture of spinal cord injury
ISCoS initiative to standardize data reporting of global epidemiological SCI trends (176). The ICF Core Sets for SCI (Comprehensive and Brief) are international data sets that can be used in clinical and research work on SCI (177). Core Sets for post-acute and long-term care settings were developed in 2010 using the International Classification of Functioning, Disability and Health (ICF) to further ensure comparability with other areas of disability statistics (177–179).
Underreporting Underreporting of both SCI and deaths from SCI is a substantial problem in low- and middle-income countries (130, 182, 183). TSCI, like most severe traumas, has a high mortality rate. If emergency trauma care services are not required to report death by ICD code, or are overwhelmed during an emergency, this information will be lost (55, 184, 185), which will artificially lower the incidence and case fatality rates (186). Even in high-resource settings, reliable information for prevalence and incidence estimates can be difficult to get. Few countries in the world have SCI registries and the existing registries have incomplete coverage. Even in countries with good statistics on SCI, the data tend to focus on TSCI and there is a significant underreporting of NTSCI cases (89). A registry for NTSCI, as with TSCI, would be expensive, time consuming and impractical because people with NTSCI – owing to the diverse etiologies – are treated and rehabilitated in multiple care settings and often do not receive specialized SCI rehabilitation services (88).
Data issues and concerns Given the paucity of data on SCI, there is a serious need to collect more data on a worldwide basis. There is also a need to improve the quality of data. The following section discusses some common limitations within SCI data collection.
Definitions and standardization of data There are variations in case definitions of SCI and inclusion criteria that affect comparability of data across settings, within and between countries. General medical definitions are clinically functional but lack the comprehensiveness needed for epidemiology, e.g. “Spinal cord injury is damage to the spinal cord that causes loss of sensation and motor control” (180). The clinical SCI definition used by the US Centers Disease Control (CDC) – “an acute traufor matic lesion of the neural elements in the spinal canal, resulting in temporary or permanent sensory deficit, motor deficit, or bowel/bladder dysfunction” – includes traumatic cases that involve an external event to trigger the injury, rather than disease or degeneration. As such it excludes intervertebral disc disease, vertebral injuries in the absence of SCI, nerve root avulsions and injuries to nerve roots and peripheral nerves outside the spinal canal, cancer, spinal cord vascular disease, and other non-traumatic spinal cord diseases (181).
Other issues Studies have uncovered several other problems related to SCI data and evidence. These include the following issues. ■ Medical record keeping, which results in missing or incorrect information within individual records. For example incorrect ICD coding can cause an over-reporting of SCI cases when fractures of the spine or contusions without neurological symptoms are mistakenly coded (20). ■ Most data, for incidence and prevalence, come from single centre hospital-based surveys, which may not be generalizable to the rest of the country. ■ Appropriateness of tools. The ICD-10 does not specifically define SCI but uses several codes to identify fractures, traumatic rup31
International Perspectives on Spinal Cord Injury
■ ■ ■ ■
tures, vertebral dislocations, and complete and incomplete lesions. In practice the data collected using these codes is unreliable for epidemiological research (187). Inconsistent use of terminology, e.g. in the spina bifida literature. Relatively small sample sizes. Scientific soundness of the methods used for determining incidence/prevalence. Lack of data on exposure to causes of SCI.
Improve comparability by using international standards for data collection As well as the International Standards for Neurological Classification of Spinal Cord Injury, the World Health Organization’s International Classification of External Cause of Injury (ICECI) and International Classification of Functioning, Disability and Health (ICF) should be consistently used to provide a universal framework for all health and disability data. The International SCI Data Sets, freely available from the ISCoS web site, further contribute to the comparability of SCI data. Countries can: ■ formally adopt the ICECI and ICF as essential standards for national data collection in all health data collection; ■ ensure that all SCI data are collected using the terminology of ICECI and the model of disability in the ICF; ■ ensure that all SCI data are reported using the International SCI Core Data Set as a minimum.
Conclusion and recommendations Using the best available data from across the world, this chapter provides information on incidence, prevalence, trends and costs of SCI. The conclusions are tentative given the quality and paucity of the data from some regions of the world. Reliable data and evidence are essential for describing the numbers of people affected and the impact on their lives, assessing causes, developing and evaluating interventions, providing information for policy-makers and decisionmakers, and raising awareness. Without reliable information, the priorities for prevention, medical and social care cannot be rationally or satisfactorily determined. There is a global need for more robust and reliable, comparable and comprehensive SCI data that can be used for research, clinical care and policy, and in particular to be able to fully include the SCI population in country-level monitoring of the implementation of the provision of the CRPD. In this light, the following recommendations can contribute to enhancing the availability and quality of data on SCI.
Improve national spinal cord injury statistics The best way of collecting SCI data is by means of a SCI registry that assembles data directly from hospitals and other health service locations and centralizes the data in a databank that is best maintained by a government authority, such as the NSCISC in the United States. Registries provide longitudinal data essential for identifying incident trends that are important for prevention programmes and other policy responses to SCI and the needs of people with SCI. In the absence of a SCI registry, the following strategies would greatly improve data collection. ■ Collect within the country’s health and disability data collection system internationally comparable SCI information, ensuring that data can be disaggregated into standard-
32
Chapter 2 A global picture of spinal cord injury
■ ■
■
■ ■
ized categories relevant for incidence trend analysis, and at a minimum by sex, age and etiology. Make SCI data available in annual reports published on the Internet in a searchable manner so that data can be easily located. Encourage and support hospitals and other health-care settings to collect SCI data, with minimal additional expense, through appropriate record-keeping and the use of formats based on international data standards. Include SCI-relevant questions in population health and disability surveys, notably censuses, national household and health surveys, and general social and economic surveys. Collect SCI-specific data through specific surveys after natural disasters such as earthquakes. Use the resources of ISCoS and other SCI professional organizations to explore the possibility of developing a standard recording method for NTSCI and a prospective SCI registry for both TSCI and NTSCI.
Encourage and improve spinal cord injury research To have robust local data, countries in all regions must encourage and seek to improve the quality
of SCI research, including especially longitudinal and cohort studies. ■ SCI topics should be included in the curriculum of medical and allied health professionals to raise awareness about SCI and to encourage young health researchers to consider SCI research. ■ Researchers can be encouraged to collaborate with agencies in charge of prevention programmes, informing prevention strategies with incidence data, and be involved in the monitoring and evaluation of prevention campaigns. ■ A comprehensive framework should be developed that identifies and standardizes direct and indirect costs of SCI. These data items should then be incorporated in administrative and national data collection instruments to enable a better understanding of the social cost of SCI. ■ Involve people directly affected by SCI in devising questions for surveys and other data collection strategies that collect data on the lived experience of SCI. The data so collected can be harmonized with the data sets on SCI that already exist. ■ Research into NTSCI should be supported to expand the evidence base in terms of incidence, survival rates, prevalence, etiologies and health care management strategies.
References 1. 2. 3. 4. 5. 6. 7. Noonan VK et al. Incidence and prevalence of spinal cord injury in Canada: a national perspective. Neuroepidemiology, 2012, 38:219-226. doi: http://dx.doi.org/10.1159/000336014 PMID:22555590 Knútsdóttir S et al. Epidemiology of traumatic spinal cord injuries in Iceland from 1975 to 2009. Spinal Cord, 2012, 50:123126. doi: http://dx.doi.org/10.1038/sc.2011.105 PMID:21946442 Hagen EM et al. A 50-year follow-up of the incidence of traumatic spinal cord injuries in western Norway. Spinal Cord, 2010, 48:313-318. doi: http://dx.doi.org/10.1038/sc.2009.133 PMID:19823192 Rahimi-Movaghar V et al. Prevalence of spinal cord injury in Tehran, Iran. The Journal of Spinal Cord Medicine, 2009, 32:428431. PMID:19777865 Dahlberg A et al. Prevalence of spinal cord injury in Helsinki. Spinal Cord, 2005, 43:47-50. doi: http://dx.doi.org/10.1038/ sj.sc.3101616 PMID:15520842 O’Connor PJ. Prevalence of spinal cord injury in Australia. Spinal Cord, 2005, 43:42-46. doi: http://dx.doi.org/10.1038/ sj.sc.3101666 PMID:15326472 New PW et al. Prevalence of non-traumatic spinal cord injury in Victoria, Australia. Spinal Cord, 2013, 51:99-102. doi: http:// dx.doi.org/10.1038/sc.2012.61 PMID:22665222
33
International Perspectives on Spinal Cord Injury
8. 9.
10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. 32. 33.
Ronen J et al. Survival after nontraumatic spinal cord lesions in Israel. Archives of Physical Medicine and Rehabilitation, 2004, 85:1499-1502. doi: http://dx.doi.org/10.1016/j.apmr.2003.11.015 PMID:15375824 Tuğcu I et al. Epidemiologic data of the patients with spinal cord injury: seven years’ experience of a single center. Ulusal Travma Ve Acil Cerrahi Dergisi = Ulusal Travma Ve Acil Cerrahi Dergisi = Turkish Journal of Trauma & Emergency Surgery; TJTES, 2011, 17:533-538. doi: http://dx.doi.org/10.5505/tjtes.2011.95676 PMID:22290007 Costacurta MLG et al. Epidemiological profile of a pediatric population with acquired spinal cord injury from AACD: Sao Paulo/Brazil. Spinal Cord, 2010, 48:118-121. doi: http://dx.doi.org/10.1038/sc.2009.130 PMID:19806161 Garshick E et al. A prospective assessment of mortality in chronic spinal cord injury. Spinal Cord, 2005, 43:408-416. doi: http://dx.doi.org/10.1038/sj.sc.3101729 PMID:15711609 McCammon JR, Ethans K. Spinal cord injury in Manitoba: a provincial epidemiological study. The Journal of Spinal Cord Medicine, 2011, 34:6-10. doi: http://dx.doi.org/10.1179/107902610X12923394765733 PMID:21528620 Sabre L et al. High incidence of traumatic spinal cord injury in Estonia. Spinal Cord, 2012, 50:755-759. doi: http://dx.doi. org/10.1038/sc.2012.54 PMID:22565551 Pérez K et al. Incidence trends of traumatic spinal cord injury and traumatic brain injury in Spain, 2000–2009. Accident; Analysis and Prevention, 2012, 46:37-44. doi: http://dx.doi.org/10.1016/j.aap.2011.12.004 PMID:22310041 Albert T et al. Rehabilitation of spinal cord injury in France: a nationwide multicentre study of incidence and regional disparities. Spinal Cord, 2005, 43:357-365. doi: http://dx.doi.org/10.1038/sj.sc.3101717 PMID:15741980 O’Connor P. Incidence and patterns of spinal cord injury in Australia. Accident; Analysis and Prevention, 2002, 34:405-415. doi: http://dx.doi.org/10.1016/S0001-4575(01)00036-7 PMID:12067103 Ahoniemi E et al. Incidence of traumatic spinal cord injuries in Finland over a 30-year period. Spinal Cord, 2008, 46:781-784. doi: http://dx.doi.org/10.1038/sc.2008.53 PMID:18542095 O’Connor RJ, Murray PC. Review of spinal cord injuries in Ireland. Spinal Cord, 2006, 44:445-448. PMID:16304563 Quinones M et al. Traumatic spinal cord in Qatar: an epidemiological study. The Middle East Journal of Emergency Medicine, 2002, 2:1-5. van Asbeck FW, Post MW, Pangalila RF. An epidemiological description of spinal cord injuries in the Netherlands in 1994. Spinal Cord, 2000, 38:420-424. doi: http://dx.doi.org/10.1038/sj.sc.3101003 PMID:10962602 Li J et al. The epidemiological survey of acute traumatic spinal cord injury (ATSCI) of 2002 in Beijing municipality. Spinal Cord, 2011, 49:777-782. doi: http://dx.doi.org/10.1038/sc.2011.8 PMID:21383758 Ning GZ et al. Epidemiology of traumatic spinal cord injury in Tianjin, China. Spinal Cord, 2011, 49:386-390. doi: http:// dx.doi.org/10.1038/sc.2010.130 PMID:20921958 Lieutaud T, Ndiaye A, Laumon B, Chiron M. Spinal cord injuries sustained in road crashes are not on the decrease in France: A study based on epidemiological trends. Journal of Neurotrauma, 2012, 29:479-487. Augutis M, Levi R. Pediatric spinal cord injury in Sweden: incidence, etiology and outcome. Spinal Cord, 2003, 41:328-336. doi: http://dx.doi.org/10.1038/sj.sc.3101478 PMID:12746739 Puisto V et al. Incidence of spinal and spinal cord injuries and their surgical treatment in children and adolescents: a population-based study. Spine, 2010, 35:104-107. doi: http://dx.doi.org/10.1097/BRS.0b013e3181c64423 PMID:20042961 Divanoglou A, Levi R. Incidence of traumatic spinal cord injury in Thessaloniki, Greece and Stockholm, Sweden: a prospective population-based study. Spinal Cord, 2009, 47:796-801. doi: http://dx.doi.org/10.1038/sc.2009.28 PMID:19350044 DeVivo MJ, Vogel LC. Epidemiology of spinal cord injury in children and adolescents. The Journal of Spinal Cord Medicine, 2004, 27:S4-S10. PMID:15503696 Vogel LC, Betz RR, Mulcahey MJ. Spinal cord injuries in children and adolescents. Handbook of Clinical Neurology, 2012, 109:131-148. doi: http://dx.doi.org/10.1016/B978-0-444-52137-8.00008-5 PMID:23098710 Burke DA et al. Incidence rates and populations at risk for spinal cord injury: a regional study. Spinal Cord, 2001, 39:274-278. doi: http://dx.doi.org/10.1038/sj.sc.3101158 PMID:11438844 Lenehan B et al. The epidemiology of traumatic spinal cord injury in British Columbia, Canada. Spine, 2012, 37:321-329. doi: http://dx.doi.org/10.1097/BRS.0b013e31822e5ff8 PMID:22337075 Surkin J et al. Spinal cord injury in Mississippi: findings and evaluation, 1992–1994. Spine , 2000, 25:716-721. doi: http:// dx.doi.org/10.1097/00007632-200003150-00011 PMID:10752104 Pickett GE et al. Epidemiology of traumatic spinal cord injury in Canada. Spine, 2006, 31:799-805. doi: http://dx.doi. org/10.1097/01.brs.0000207258.80129.03 PMID:16582854 Yang NP et al. The incidence and characterisation of hospitalised acute spinal trauma in Taiwan – a population-based study. Injury, 2008, 39:443-450. doi: http://dx.doi.org/10.1016/j.injury.2007.12.007 PMID:18321510
34
Chapter 2 A global picture of spinal cord injury
34. Middleton JW et al. Life expectancy after spinal cord injury: a 50-year study. Spinal Cord, 2012, 50:803-811. doi: http:// dx.doi.org/10.1038/sc.2012.55 PMID:22584284 35. National Spinal Cord Injury Statistical Center. Complete Public Version of the 2011 Annual Statistical Report for the Spinal Cord Injury Model System. Birmingham, Alabama, 2011. 36. Hagen EM, Eide GE, Elgen I. Traumatic spinal cord injury among children and adolescents: a cohort study in western Norway. Spinal Cord, 2011, 49:981-985. doi: http://dx.doi.org/10.1038/sc.2011.42 PMID:21556012 37. Vitale MG et al. Epidemiology of pediatric spinal cord injury in the United States, years 1997 and 2000. Journal of Pediatric Orthopedics, 2006, 26:745-749. doi: http://dx.doi.org/10.1097/01.bpo.0000235400.49536.83 PMID:17065938 38. Olasode BJ et al. Traumatic spinal cord injuries in Ile-Ife, Nigeria, and its environs. Tropical Doctor, 2006, 36:181-182. doi: http://dx.doi.org/10.1258/004947506777978136 PMID:16884634 39. Umaru H, Ahidjo A. Pattern of spinal cord injury in Maiduguri, North Eastern Nigeria. Nigerian Journal of Medicine, 2005, 14:276-278. PMID:16350696 40. Solagberu BA. Spinal cord injuries in Ilorin, Nigeria. West African Journal of Medicine, 2002, 21:230-232. PMID:12744575 41. Nwadinigwe CU, Iloabuchi TC, Nwabude IA. Traumatic spinal cord injuries (SCI): a study of 104 cases. Nigerian Journal of Medicine, 2004, 13:161-165. PMID:15293837 42. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:1134-1137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 43. Obalum DC et al. Profile of spinal injuries in Lagos, Nigeria. Spinal Cord, 2009, 47:134-137. doi: http://dx.doi.org/10.1038/ sc.2008.93 PMID:18679400 44. Fielingsdorf K, Dunn RN. Cervical spine injury outcome - a review of 101 cases treated in a tertiary referral unit. South African Medical Journal, 2007, 97:203-207. PMID:17440669 45. Gosselin RA, Coppotelli C. A follow-up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 46. Dryden DM et al. Utilization of health services following spinal cord injury: a 6-year follow-up study. Spinal Cord, 2004, 42:513-525. doi: http://dx.doi.org/10.1038/sj.sc.3101629 PMID:15249928 47. Pirouzmand F. Epidemiological trends of spine and spinal cord injuries in the largest Canadian adult trauma center from 1986 to 2006. Journal of Neurosurgery. Spine, 2010, 12:131-140. doi: http://dx.doi.org/10.3171/2009.9.SPINE0943 PMID:20121346 48. Dryden DM et al. The epidemiology of traumatic spinal cord injury in Alberta, Canada. The Canadian Journal of Neurological Sciences, 2003, 30:113-121. PMID:12774950 49. Neumann CR, Brasil AV, Albers F. Risk factors for mortality in traumatic cervical spinal cord injury: Brazilian data. The Journal of Trauma, 2009, 67:67-70. doi: http://dx.doi.org/10.1097/TA.0b013e3181aa63f3 PMID:19590310 50. Leal-Filho MB et al. Spinal cord injury: epidemiological study of 386 cases with emphasis on those patients admitted more than four hours after the trauma. Arquivos de Neuro-Psiquiatria, 2008, 66:365-368. doi: http://dx.doi.org/10.1590/S0004282X2008000300016 PMID:18641873 51. Brito LMO et al. Epidemiological evaluation of victims of spinal cord injury. Revista do Collégio Brasileiro de Cirugöes, 2011, 38:304-309. doi: http://dx.doi.org/10.1590/S0100-69912011000500004 PMID:22124640 52. Collazo Álvarez H et al. Traumatismo raquimedular toracico y lumbar. Rev Cubana Ortop Traumatol, 2002, 16:53-60. 53. Alshahri SS et al. Traumatic spinal cord injury in Saudi Arabia: an epidemiological estimate from Riyadh. Spinal Cord, 2012, 50:882-884. PMID:22777491 54. Raibulet T et al. Spinal cord injury patients in the physical medicine and rehabilitation hospital, Kuwait – a nine-year retrospective study. Kuwait Medical Journal, 2001, 33:211-215. 55. Rathore FA et al. Spinal cord injury management and rehabilitation: highlights and shortcomings from the 2005 earthquake in Pakistan. Archives of Physical Medicine and Rehabilitation, 2008, 89:579-585. doi: http://dx.doi.org/10.1016/j. apmr.2007.09.027 PMID:18295642 56. Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord, 2003, 41:303-309. doi: http:// dx.doi.org/10.1038/sj.sc.3101443 PMID:12714994 57. Lidal IB et al. Mortality after spinal cord injury in Norway. Journal of Rehabilitation Medicine, 2007, 39:145-151. doi: http:// dx.doi.org/10.2340/16501977-0017 PMID:17351697 58. Post MWM et al. Duration and functional outcome of spinal cord injury rehabilitation in the Netherlands. Journal of Rehabilitation Research and Development, 2005, 42 Suppl I:75-85. doi: http://dx.doi.org/10.1682/JRRD.2004.10.0133 PMID:16195965 59. Scivoletto G et al. Traumatic and non-traumatic spinal cord lesions: an Italian comparison of neurological and functional outcomes. Spinal Cord, 2011, 49:391-396. doi: http://dx.doi.org/10.1038/sc.2010.85 PMID:20603629
35
International Perspectives on Spinal Cord Injury
60. Pagliacci MC et al. An Italian survey of traumatic spinal cord injury. The Gruppo Italiano Studio Epidemiologico Mielolesioni Study. Archives of Physical Medicine and Rehabilitation, 2003, 84:1266-1275. doi: http://dx.doi.org/10.1016/S00039993(03)00234-X PMID:13680560 61. Catz A et al. Survival following spinal cord injury in Israel. Spinal Cord, 2002, 40:595-598. doi: http://dx.doi.org/10.1038/ sj.sc.3101391 PMID:12411967 62. Cosar SN et al. Demographic characteristics after traumatic and non-traumatic spinal cord injury: a retrospective comparison study. Spinal Cord, 2010, 48:862-866. doi: http://dx.doi.org/10.1038/sc.2010.49 PMID:20440301 63. Gur A et al. Characteristics of traumatic spinal cord injuries in south-eastern Anatolia, Turkey: a comparative approach to 10 years’ experience. International Journal of Rehabilitation Research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue Internationale de Recherches de Readaptation, 2005, 28:57-62. doi: http://dx.doi.org/10.1097/00004356-20050300000008 PMID:15729098 64. Ones K et al. Comparison of functional results in non-traumatic and traumatic spinal cord injury. Disability and Rehabilitation, 2007, 29:1185-1191. doi: http://dx.doi.org/10.1080/09638280600902661 PMID:17653992 65. Karacan I et al. Traumatic spinal cord injuries in Turkey: a nation-wide epidemiological study. Spinal Cord, 2000, 38:697-701. doi: http://dx.doi.org/10.1038/sj.sc.3101064 PMID:11114778 66. Seguin P et al. Impact of age on mortality in patients with acute traumatic spinal cord injury requiring intensive care. Annales Francaises d’Anesthesie et de Reanimation, 2012, 31:196-202. doi: http://dx.doi.org/10.1016/j.annfar.2011.10.019 PMID:22204755 67. Van Den Berg M et al. Incidence of traumatic spinal cord injury in Aragon, Spain (1972–2008). Journal of Neurotrauma, 2011, 28:469-477. doi: http://dx.doi.org/10.1089/neu.2010.1608 PMID:21190391 68. Islam MS, Hafez MA, Akter M. Characterization of spinal cord lesion in patients attending a specialized rehabilitation center in Bangladesh. Spinal Cord, 2011, 49:783-786. doi: http://dx.doi.org/10.1038/sc.2011.36 PMID:21502957 69. Singh R et al. Traumatic spinal cord injuries in Haryana: An epidemiological study. Indian Journal of Community Medicine, 2003, 28:184-186. 70. Pandey V et al. Care of post-traumatic spinal cord injury patients in India: an analysis. Indian Journal of Orthopaedics, 2007, 41:295-299. doi: http://dx.doi.org/10.4103/0019-5413.36990 PMID:21139781 71. Chhabra HS, Arora M. Demographic profile of traumatic spinal cord injuries admitted at Indian Spinal Injuries Centre with special emphasis on mode of injury: a retrospective study. Spinal Cord, 2012, 50:745-754. doi: http://dx.doi.org/10.1038/ sc.2012.45 PMID:22584285 72. Kuptniratsaikul V. Epidemiology of spinal cord injuries: a study in the spinal unit, Siriraj Hospital, Thailand. Journal of the Medical Association of Thailand, 2003, 86:1116-1121. PMID:14971518 73. Lee BB et al. The global map for traumatic spinal cord injury epidemiology: update 2011, global incidence rate. Spinal Cord, 2013,In press PMID:23439068 74. Yang JY et al. Epidemiology of the spinal cord and cauda equine injury in Korea-multicenter study. J Korean Soc Spine Surg, 2011, 18:83-90. doi: http://dx.doi.org/10.4184/jkss.2011.18.3.83 75. Middleton PM. The pre-hospital epidemiology and management of spinal cord injuries in New South Wales: 2004–2008. Injury, 2012, 43:480-485. doi: http://dx.doi.org/10.1016/j.injury.2011.12.010 PMID:22244002 76. Chan SCC, Chan APS. Rehabilitation outcomes following traumatic spinal cord injury in a tertiary spinal cord injury centre: a comparison with an international standard. Spinal Cord, 2005, 43:489-498. doi: http://dx.doi.org/10.1038/ sj.sc.3101743 PMID:15824758 77. Wu JC et al. Effects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of Neurotrauma, 2012, 29:889-897. doi: http:// dx.doi.org/10.1089/neu.2011.1777 PMID:21510819 78. Wang HF et al. Epidemiological features of traumatic spinal cord injury in Anhui Province, China. Spinal Cord, 2013, 51:2022. doi: http://dx.doi.org/10.1038/sc.2012.92 PMID:22945750 79. Wu Q et al. Epidemiology of traumatic cervical spinal cord injury in Tianjin, China. Spinal Cord, 2012, 50:740-744. doi: http:// dx.doi.org/10.1038/sc.2012.42 PMID:22525311 80. Feng HY et al. Epidemiological profile of 239 traumatic spinal cord injury cases over a period of 12 years in Tiajin, China. The Journal of Spinal Cord Medicine, 2011, 34:388-394. www.maneypublishing.com/journals/scm and www.ingentaconnect.com/content/maney/scm doi: http://dx.doi.org/10.1179/2045772311Y.0000000017 PMID:21903012 81. Lakhey S et al. Aetioepidemiological profile of spinal injury patients in eastern Nepal. Tropical Doctor, 2005, 35:231-233. doi: http://dx.doi.org/10.1258/004947505774938756 PMID:16354480
36
Chapter 2 A global picture of spinal cord injury
82. DeVivo MJ, Chen Y. Trends in new injuries prevalent cases, and aging with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:332-338. doi: http://dx.doi.org/10.1016/j.apmr.2010.08.031 PMID:21353817 83. Lee JH et al. Characteristics of pediatric-onset spinal cord injury. Pediatrics International, 2009, 51:254-257. doi: http:// dx.doi.org/10.1111/j.1442-200X.2008.02684.x PMID:19405927 84. Lhéritier K et al. Survival of tetraplegic spinal cord injured persons after the first admission of a rehabilitation center and prognosis factors: a multicentre study of 697 subjects in French centers. Revue d’Epidemiologie et de Sante Publique, 2001, 49:449-458. PMID:11845094 85. Celani MG et al. Spinal cord injury in Italy: a multicentre retrospective study. Archives of Physical Medicine and Rehabilitation, 2001, 82:589-596. doi: http://dx.doi.org/10.1053/apmr.2001.21948 PMID:11346833 86. Martin BW, Dykes E, Lecky FE. Patterns and risks in spinal trauma. Archives of Disease in Childhood, 2004, 89:860-865. doi: http://dx.doi.org/10.1136/adc.2003.029223 PMID:15321867 87. New PW, Cripps RA, Bonne Lee B. Global maps of non-traumatic spinal cord injury epidemiology: towards a living data repository. Spinal Cord, 2013, in print http://dx.doi.org/10.1038/sc.2012.165 doi: http://dx.doi.org/10.1038/sc.2012.165 PMID:23318556 88. New PW. Non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? Australian Health Review, 2006, 30:353-361. doi: http://dx.doi.org/10.1071/AH060353 PMID:16879094 89. New PW, Sundararajan V. Incidence of non-traumatic spinal cord injury in Victoria, Australia: a populationbased study and literature review. Spinal Cord, 2008, 46:406-411. doi: http://dx.doi.org/10.1038/sj.sc.3102152 PMID:18071356 90. van den Berg ME et al. Incidence of nontraumatic spinal cord injury: a Spanish cohort study (1972–2008). Archives of Physical Medicine and Rehabilitation, 2012, 93:325-331. doi: http://dx.doi.org/10.1016/j.apmr.2011.08.027 PMID:22289245 91. Centers for Disease Control and Prevention. Racial/ethnic differences in the birth prevalence of spina bifida – United States, 1995. MMWR Morb Mortal Wkly, 2009. Rep, 2005, 57:1409-1413. 92. Tarqui Mamani C et al. Incidencia de los defectos del tubo neural en el Instituto Nacional Materno Perinatal de Lima, Incidence of neural tube defects in the National Maternal-Perinatal Institute of Lima. Rev Chil Salud Pública, 2009, 13:82-89. 93. Msamati BC, Igbigbi PS, Chisi JE. The incidence of cleft lip, cleft palate, hydrocephalus and spina bifida at Queen Elizabeth Central Hospital, Blantyre, Malawi. The Central African Journal of Medicine, 2000, 46:292-296. PMID:12002118 94. Murshid WR. Spina bifida in Saudi Arabia: is consanguinity among the parents a risk factor? Pediatric Neurosurgery, 2000, 32:10-12. doi: http://dx.doi.org/10.1159/000028890 PMID:10765132 95. Onrat ST et al. Incidence of neural tube defects in Afyonkarahisar, Western Turkey. Genetics and Molecular Research, 2009, 8:154-161. doi: http://dx.doi.org/10.4238/vol8-1gmr552 PMID:19283682 96. Orioli IM et al. Effects of folic acid fortification on spina bifida prevalence in Brazil. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:831-835. doi: http://dx.doi.org/10.1002/bdra.20830 PMID:21630426 97. Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 98. Ahuka OL et al. Congenital malformations in the North-Eastern Democratic Republic of Congo during Civil War. East African Medical Journal, 2006, 83:95-99. doi: http://dx.doi.org/10.4314/eamj.v83i2.9395 PMID:16708881 99. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 100. Amini H et al. The Swedish Birth Defects Registry: ascertainment and incidence of spina bifida and cleft lip/palate. Acta Obstetricia et Gynecologica Scandinavica, 2009, 88:654-659. doi: http://dx.doi.org/10.1080/00016340902934696 PMID:19412801 101. Barboza Argüello ML, Umaña Solís LM. Impact of the fortification of food with folic acid on neural tube defects in Costa Rica. Revista Panamericana de Salud Pública, 2011, 30:1-6. PMID:22159644 102. Sípek A, Gregor V, Horacek J. Birth defects in the Czech Republic in the period 1961–2005 – mean incidences. Ceska Gynekologie, 2007, 72:185-191. PMID:17616072 103. Hernández-Herrera RJ, Alcala-Galvan LG, Flores-Santos R. Neural defect prevalence in 248,352 consecutive newborns. Revista Medica del Instituto Mexicano del Seguro Social, 2008, 46:201-204. PMID:19133193 104. Boyd PA et al. Monitoring the prenatal detection of structural fetal congenital anomalies in England and Wales: registerbased study. Journal of Medical Screening, 2011, 18:2-7. doi: http://dx.doi.org/10.1258/jms.2011.010139 PMID:21536809 105. De Wals PF et al. Reduction in neural-tube defects after folic acid fortification in Canada. The New England Journal of Medicine, 2007, 357:135-142. doi: http://dx.doi.org/10.1056/NEJMoa067103 PMID:17625125
37
International Perspectives on Spinal Cord Injury
106. López-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http:// dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 107. Njamnshi AK et al. Neural tube defects are rare among black Americans but not in sub-Saharan black Africans: the case of Yaounde – Cameroon. Journal of the Neurological Sciences, 2008, 270:13-17. doi: http://dx.doi.org/10.1016/j. jns.2008.01.010 PMID:18295800 108. Owen TJ, Halliday JL, Sone CA. Neural tube defects in Victoria, Australia: potential contributing factors and public health implications. Australian and New Zealand Journal of Public Health, 2000, 24:584-589. doi: http://dx.doi.org/10.1111/j.1467842X.2000.tb00521.x PMID:11215005 109. Sayed AR et al. Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2008, 82:211-216. doi: http://dx.doi. org/10.1002/bdra.20442 PMID:18338391 110. Golalipour MJ et al. Epidemiology of neural tube defects in northern Iran, 1998–2003. Eastern Mediterranean Health Journal, 2007, 13:560-566. PMID:17687828 111. Farhud D, Hadavi V, Sadighi H. Epidemiology of neural tube defects in the world and Iran. Iranian Journal of Public Health, 2000, 29:83-90. 112. García López E et al. Prevalence of neural tube defects in Asturias (Spain): impact of prenatal diagnosis. Gaceta Sanitaria, 2009, 23:506-511. doi: http://dx.doi.org/10.1016/j.gaceta.2009.01.011 PMID:19406531 113. Sanchis Calvo A, Martinez-Frias M. Clinical epidemiological study of neural tube defects classified according to the five sites of closure. Anales Espanoles de Pediatria, 2001, 54:165-173. doi: http://dx.doi.org/10.1016/S1695-4033(01)78673-0 PMID:11181213 114. Liu J et al. Prevalence of neural tube defects in economically and socially deprived area of China. Child’s Nervous System, 2007, 23:1119-1124. doi: http://dx.doi.org/10.1007/s00381-007-0344-3 PMID:17450368 115. Pei LJ et al. The epidemiology of neural tube defects in high-prevalence and low-prevalence areas of China. Zhonghua Liu Xing Bing Xue Za Zhi, 2003, 24:465-470. PMID:12848911 116. Li Z et al. Prevalence of major external birth defects in high and low risk areas in China, 2003. Zhonghua Liu Xing Bing Xue Za Zhi, 2005, 26:252-257. PMID:15941530 117. Bower C, D’Antoine H, Stanley FJ. Neural tube defects in Australia: trends in encephaloceles and other neural tube defects before and after promotion of folic acid supplementation and voluntary food fortification. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2009, 85:269-273. doi: http://dx.doi.org/10.1002/bdra.20536 PMID:19180646 118. Li Z et al. Extremely high prevalence of neural tube defects in a 4-county area in Shanxi Province, China. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2006, 76:237-240. doi: http://dx.doi.org/10.1002/bdra.20248 PMID:16575897 119. Nikkilä A, Rydhstrom H, Kallen B. The incidence of spina bifida in Sweden 1973–2003: the effect of prenatal diagnosis. European Journal of Public Health, 2006, 16:660-662. doi: http://dx.doi.org/10.1093/eurpub/ckl053 PMID:16672253 120. Petrova JG, Vaktskjold A. The incidence of neural tube defects in Norway and the Arkhangelskaja Oblast in Russia and the association with maternal age. Acta Obstetricia et Gynecologica Scandinavica, 2009, 88:667-672. doi: http://dx.doi. org/10.1080/00016340902898008 PMID:19353336 121. Rankin J et al. The changing prevalence of neural tube defects: a population-based study in the north of England, 1984–96. Northern Congenital Abnormality Survey Steering Group. Paediatric and Perinatal Epidemiology, 2000, 14:104110. doi: http://dx.doi.org/10.1046/j.1365-3016.2000.00246.x PMID:10791652 122. Catz A. Recovery of neurologic function following nontraumatic spinal cord lesions in Israel. Spine (Phila Pa 1976). 2004 Oct 15;29(20):2278–2282; discussion 2283. 123. Werhagen L, Hultling C, Molander C. The prevalence of neuropathic pain after non-traumatic spinal cord lesion. Spinal Cord, 2007, 45:609-615. doi: http://dx.doi.org/10.1038/sj.sc.3102000 PMID:17160075 124. Osterthun R, Post MWM, van Asbeck FWA. Characteristics, length of stay and functional outcome of patients with spinal cord injury in Dutch and Flemish rehabilitation centers. Spinal Cord, 2009, 47:339-344. doi: http://dx.doi.org/10.1038/ sc.2008.127 PMID:19002154 125. Gupta A et al. Non-traumatic spinal cord lesions: epidemiology, complications, neurological and functional outcome of rehabilitation. Spinal Cord, 2009, 47:307-311. doi: http://dx.doi.org/10.1038/sc.2008.123 PMID:18936767 126. Quintana-Gonzales A et al. Nontraumatic spinal cord injury: etiology, demography and clinics. Rev Peru Med Exp Salud Publica, 2011, 28:633-638. PMID:22241260 127. Ahoniemi E, Pohjolainen T, Kautiainen H. Survival after spinal cord injury in Finland. Journal of Rehabilitation Medicine, 2011, 43:481-485. doi: http://dx.doi.org/10.2340/16501977-0812 PMID:21533327
38
Chapter 2 A global picture of spinal cord injury
128. Sabre L et al. Traumatic spinal cord injury in two European countries: why the differences? European Journal of Neurology, 2013, 20:293-299. doi: http://dx.doi.org/10.1111/j.1468-1331.2012.03845.x PMID:22891855 129. O’Connor PJ. Survival after spinal cord injury in Australia. Archives of Physical Medicine and Rehabilitation, 2005, 86:37-47. PMID:15640987 130. Hagen EM et al. Traumatic spinal cord injuries – incidence, mechanisms and course. Tidsskrift for Den Norske Laegeforening, 2012, 132:831-837. doi: http://dx.doi.org/10.4045/tidsskr.10.0859 PMID:22511097 131. Strauss DJ et al. Trends in life expectancy after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2006, 87:1079-1085. doi: http://dx.doi.org/10.1016/j.apmr.2006.04.022 PMID:16876553 132. Saunders LL et al. Traumatic spinal cord injury mortality, 1981–1998. The Journal of Trauma, 2009, 66:184-190. doi: http:// dx.doi.org/10.1097/TA.0b013e31815644e5 PMID:19131823 133. Soden RJ et al. Causes of death after spinal cord injury. Spinal Cord, 2000, 38:604-610. doi: http://dx.doi.org/10.1038/ sj.sc.3101080 PMID:11093321 134. National Spinal Cord Injury Statistical Center. Birmingham, Alabama Spinal Cord Injury Facts and Figures at a Glance, February 2012 (https://www.nscisc.uab.edu/PublicDocuments/fact_figures_docs/Facts%202012%20Feb%20Final.pdf, accessed 9 January 2013). 135. Hagen EM et al. Mortality after traumatic spinal cord injury: 50 years of follow-up. Journal of Neurology, Neurosurgery, and Psychiatry, 2010, 81:368-373. doi: http://dx.doi.org/10.1136/jnnp.2009.178798 PMID:19726408 136. Rathore MFA. 2013. Spinal Cord Injuries in the Developing World. In: JH Stone, M Blouin, eds. International encyclopedia of rehabilitation. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/141/ 137. Couris CM et al. Characteristics of adults with incident traumatic spinal cord injury in Ontario, Canada. Spinal Cord, 2010, 48:39-44. doi: http://dx.doi.org/10.1038/sc.2009.77 PMID:19546873 138. Fassett DR et al. Mortality rates in geriatric patients with spinal cord injuries. Journal of Neurosurgery, 2007, 7:277-281. PMID:17877260 139. Demetriades D et al. The effect of trauma center designation and trauma volume on outcome in specific severe injuries. Annals of Surgery, 2005, 242:512-517. PMID:16192811 140. Harvey C et al. New estimates of the direct costs of traumatic spinal cord injuries: results of a nationwide survey. Paraplegia, 1992, 30:834-850. doi: http://dx.doi.org/10.1038/sc.1992.160 PMID:1287537 141. Johnson RL, Brooks CA, Whiteneck GG. Cost of traumatic spinal cord injury in a population-based registry. Spinal Cord, 1996, 34:470-480. doi: http://dx.doi.org/10.1038/sc.1996.81 PMID:8856854 142. Bötel U et al. The cost of ventilator-dependent spinal cord injuries-patients in the hospital and at home. Spinal Cord, 1997, 35:40-42. doi: http://dx.doi.org/10.1038/sj.sc.3100345 PMID:9025219 143. DeVivo MJ. Causes and costs of spinal cord injury in the United States. Spinal Cord, 1997, 35:809-813. doi: http://dx.doi. org/10.1038/sj.sc.3100501 PMID:9429259 144. Dryden DM et al. Direct health care costs after traumatic spinal cord injury. The Journal of Trauma, 2005, 59:443-449. PMID:16294090 145. Mak KS et al. Incidence and treatment patterns in hospitalizations for malignant spinal cord compression in the United States, 1998–2006. International Journal of Radiation Oncology, Biology, Physics, 2011, 80:824-831. doi: http://dx.doi. org/10.1016/j.ijrobp.2010.03.022 PMID:20630663 146. New PW, Jackson T. The costs and adverse events associated with hospitalization of patients with spinal cord injury in Victoria, Australia. Spine, 2010, 35:796-802. PMID:20228702 147. Greenwald BD et al. Gender-related differences in acute rehabilitation lengths of stay, charges, and functional outcomes for a matched sample with spinal cord injury: a multicenter investigation. Archives of Physical Medicine and Rehabilitation, 2001, 82:1181-1187. doi: http://dx.doi.org/10.1053/apmr.2001.24891 PMID:11552188 148. St. Andre JR et al. A comparison of costs and health care utilization for veterans with traumatic and nontraumatic spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:27-42. doi: http://dx.doi.org/10.1310/sci1604-27 149. Sundance PD et al. Systematic care management: clinical and economic analysis of a national sample of patients with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2004, 10:17-34. doi: http://dx.doi. org/10.1310/2E3M-X01K-786H-V8FC 150. Baaj AA et al. Health care burden of cervical spine fractures in the United States: analysis of a nationwide database over a 10-year period. Journal of Neurosurgery. Spine, 2010, 13:61-66. doi: http://dx.doi.org/10.3171/2010.3.SPINE09530 PMID:20594019 151. DeVivo MJ et al. Costs of care following spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:1-9. doi: http://dx.doi.org/10.1310/sci1604-1
39
International Perspectives on Spinal Cord Injury
152. Cao Y et al. Lifetime direct costs after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:10-16. doi: http://dx.doi.org/10.1310/sci1604-10 153. National Spinal Cord Injury Statistical Center. Birmingham, Alabama Spinal Cord Injury Facts and Figures at a Glance, February 2013 (https://www.nscisc.uab.edu/PublicDocuments/fact_figures_docs/Facts%202013.pdf, accessed 23 Mai 2013). Based on data from Economic Impact of SCI published in Topics in Spinal Cord Injury Rehabilitation, 2011, 16(4). 154. Access Economics for the Victorian Neurotrauma Initiative. The economic cost of spinal cord injury and traumatic brain injury in Australia. 2009 (http://www.tac.vic.gov.au/about-the-tac/our-organisation/research/tac-neurotraumaresearch/vni/the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia. pdf?bcsi_scan_c7a381ba8bd8a412=Ll1KKoXsl2UO97L0ZcjjMUATHXYjAAAAPRI4Bw==&bcsi_scan_filename=the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia.pdf, accessed 9 January 2013) Based on Transport Accident Commission (TAC) data on the costs for healthcare, long term care, equipment and modifications, administration and compensation to families for TBI and SCI patients in Victoria for pay years 2004–2008. 155. Cassell CH et al. Health care expenditures among children with and those without spina bifida enrolled in Medicaid in North Carolina. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:1019-1027. doi: http://dx.doi. org/10.1002/bdra.22864 PMID:22021073 156. Bowkett B, Deverall E. Paediatric spina bifida inpatient treatment at Wellington Regional Hospital: a cost analysis of sequential patients. The New Zealand Medical Journal, 2012, 125:13-18. PMID:22426607 157. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 158. Munce SE et al. Direct costs of adult traumatic spinal cord injury in Ontario. Spinal Cord, 2013, 51:64-69. doi: http://dx.doi. org/10.1038/sc.2012.81 PMID:22801189 159. Haeusler JM et al. Pilot study on the comprehensive economic costs of major trauma: consequential costs are well in excess of medical costs. The Journal of Trauma, 2006, 61:723-731. PMID:16967014 160. Noonan VK et al. The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry. Spinal Cord, 2012, 50:2227. doi: http://dx.doi.org/10.1038/sc.2011.109 PMID:22042297 161. Rick Hansen Institute Spinal Cord Injury Registry. web site (http://rickhansenregistry.org, accessed 17 March 2013). 162. O’Connor PJ. Development and utilisation of the Australian spinal cord injury register. Spinal Cord, 2000, 38:597-603. doi: http://dx.doi.org/10.1038/sj.sc.3101048 PMID:11093320 163. Stover SL et al. History, implementation, and current status of the national spinal cord injury database. Archives of Physical Medicine and Rehabilitation, 1999, 80:1365-1371. doi: http://dx.doi.org/10.1016/S0003-9993(99)90246-0 PMID:10569429 164. DeVivo MJ, Go BK, Jackson AB. Overview of the National Spinal Cord Injury Statistical Center database. The Journal of Spinal Cord Medicine, 2002, 25:335-338. PMID:12482178 165. World Health Organization. International Classification of Diseases, 2010, web site (http://www.who.int/classifications/icd/ en/, accessed 18 March 2012). 166. OECD, World Health Organization, Eurostat. A system of health accounts, OECD Publishing, 2011 (http://www.oecd-ilibrary. org/social-issues-migration-health/a-system-of-health-accounts_9789264116016-en, accessed 17 May 2013). 167. Marino RJ et al. International standards for neurological classification of spinal cord injury. The Journal of Spinal Cord Medicine, 2003, 26 Suppl 1:S50-S56. PMID:16296564 168. Waring WP et al. 2009 review and revisions of the International Standards for the Neurological Classification of Spinal Cord Injury. The Journal of Spinal Cord Medicine, 2010, 33:346-352. PMID:21061894 169. Kirshblum SC et al. International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 2011, 34:535-546. doi: http://dx.doi.org/10.1179/204577211X13207446293695 PMID:22330108 170. Kirshblum SC et al. Reference for the 2011 revision of the International Standards for Neurological Classification of Spinal Cord Injury. The Journal of Spinal Cord Medicine, 2011, 34:547-554. doi: http://dx.doi.org/10.1179/1079026 11X13186000420242 PMID:22330109 171. Biering-Sørensen F et al. International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi. org/10.1038/sj.sc.3101930 PMID:16955072 172. International SCI Data Sets. International Spinal Cord Society (ISCoS) (http://www.iscos.org.uk/international-sci-data-sets, accessed 22 May 2013). 173. DeVivo MJ. International Spinal Cord Injuury Core Data Set. Spinal Cord, 2006, 44:535-540. 174. New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord, advance online publication, January 2013. doi: 10.1038/sc.2012.160. doi: http://dx.doi.org/10.1038/sc.2012.160
40
Chapter 2 A global picture of spinal cord injury
175. DeVivo MJ et al. Standardization of data analysis and reporting of results from the International Spinal Cord Injury Core Data Set. Spinal Cord, 2011, 49:596-599. doi: http://dx.doi.org/10.1038/sc.2010.172 PMID:21135863 176. Global Mapping of Spinal Cord Injury (SCI) Epidemiology. Towards a living data repository. The International Spinal Cord Society, web site (http://www.iscos.org.uk/sci-global-mapping, accessed 4 June, 2013). 177. Biering-Sørensen F et al. Developing core sets for persons with spinal cord injuries based on the International Classification of Functioning, Disability and Health as a way to specify functioning. Spinal Cord, 2006, 44:541-546. doi: http://dx.doi. org/10.1038/sj.sc.3101918 PMID:16955074 178. Cieza A et al. ICF Core Sets for individuals with spinal cord injury in the long-term context. Spinal Cord, 2010, 48:305-312. doi: http://dx.doi.org/10.1038/sc.2009.183 PMID:20065984 179. Kirchberger I et al. ICF Core Sets for individuals with spinal cord injury in the early post-acute context. Spinal Cord, 2010, 48:297-304. doi: http://dx.doi.org/10.1038/sc.2009.128 PMID:19786973 180. Gale Encyclopedia of Medicine. 4th ed. Farmington Hills, Michigan: Gale Cengage Learning Inc; 2011. 181. Centers for Disease Control and Prevention. Case definition of spinal cord injury. 1990 (http://wwwn.cdc.gov/nndss/script/ casedef.aspx?CondYrID=854&DatePub=1/1/1990%2012:00:00%20AM, accessed 17.5.2013). 182. Ackery A, Tator C, Krassioukov A. A global perspective on spinal cord injury epidemiology. Journal of Neurotrauma, 2004, 21:1355-1370. doi: http://dx.doi.org/10.1089/neu.2004.21.1355 PMID:15672627 183. Draulans N et al. Etiology of spinal cord injuries in sub-Saharan Africa. Spinal Cord, 2011, 49:1148-1154. doi: http://dx.doi. org/10.1038/sc.2011.93 PMID:21987062 184. Solagberu BA et al. Pre-hospital care in Nigeria: a country without emergency medical services. Nigerian Journal of Clinical Practice, 2009, 12:29-33. PMID:19562917 185. Afuwape OO et al. Preventable trauma deaths in Ibadan: a comparison of revised trauma score and panel review. West African Journal of Medicine, 2011, 30:19-23. doi: http://dx.doi.org/10.4314/wajm.v30i1.69879 PMID:21863584 186. Thanni LO, Kehinde OA. Trauma at a Nigerian teaching hospital: pattern and documentation of presentation. African Health Sciences, 2006, 6:104-107. PMID:16916301 187. Noonan VK et al. The validity of administrative data to classify patients with spinal column and cord injuries. Journal of Neurotrauma, 2013, 30:173-180. doi: http://dx.doi.org/10.1089/neu.2012.2441 PMID:23002989
41
Chapter 3 Prevention of spinal cord injury
“I am a 52-year-old male with an incomplete but severe spinal cord injury (C4). The spinal cord injury was caused by a traffic accident in 1973, when I was 16 years of age. The traffic accident was my own fault; I was driving too fast without a driver’s license and a little bit drunk. I can move my arms a little bit and use my hands a little. I can stand, but I cannot walk. I cannot type on the computer, but I can use a speech-to-text programme to be able to write on a computer. To move around I use my electric wheelchair. To handle my personal needs, I have round-the-clock personal assistance.” (Stig, Denmark) “Between rice planting seasons, I worked as a labourer on construction sites in Hanoi to make additional money, both to ensure that I could afford a good stock of seeds for the rice season and so that I could cater to the needs of my children for their schooling and their future. One day in the city my whole life collapsed literally on me when I lost control while carrying a load of bricks on a wet plank.” (Anonymous, Viet Nam) “I fell from the roof of my house in 1976 resulting in a spinal cord injury (C5–6) that left me unable to move my legs and limited my control of fingers and arms.” (David, USA) “In 1998, I suffered a gunshot wound that caused a spinal cord injury at the T6–7 level.” (Robert, Uganda) “I was injured in October 1997 while bodysurfing at Noosa Heads, Queensland, Australia. As a result of my spinal cord injury (C4–5) I am able only to move my head and have absolutely no functional movement in any limbs. Many challenges suddenly arose when launched into this sticky situation requiring interesting problem-solving abilities to maximize independence and also to help reduce the burden on others.” (Brad, Australia) “I am a tetraplegic who sustained a spinal cord injury many years ago in 1974 playing rugby when I was 15½ years old.” (Richard, New Zealand)
3
Prevention of spinal cord injury When spinal cord injury (SCI) follows a traumatic incident such as a road traffic crash or a fall, the transition is often from good health to permanent disability in a matter of seconds. Whether the origin is traumatic or non-traumatic, the good news is that a large proportion of these injuries are preventable. Primary prevention involves actions to avoid or remove the cause of SCI in an individual or a population before the problem arises, e.g. actions to reduce road traffic injuries. Secondary prevention comes into play once a SCI has occurred. The aim is to provide early diagnosis and treatment, and to limit disability (see Chapter 4: Health care and rehabilitation needs: Pre-hospital and acute care). Early recognition of the possibility of SCI following an injury, including proper transportation to an appropriate facility, and access to acute rehabilitation is part of secondary prevention. Tertiary prevention focuses on rehabilitation post-SCI and environmental interventions to reduce complications and promote successful inclusion of the injured person in family and community life (1). All forms of prevention are required. People with disabilities have emphasized access to health, together with human rights and social inclusion, as solutions to the predicament of health conditions associated with disability (2). Human rights principles of respect and dignity, as highlighted by the Convention on the Rights of Persons with Disabilities (3), entail that prevention strategies are undertaken in ways that do not demean people living with SCI (4). This chapter discusses primary prevention interventions to reduce the occurrence of SCI, predominantly those of traumatic origin. It highlights interventions with proven effectiveness and points to those where more research is needed. Secondary and tertiary prevention are covered in subsequent chapters.
Causes of traumatic spinal cord injury Traumatic SCI can result from several different mechanisms, e.g. road traffic crashes, falls, violence, while undertaking different activities, e.g. at work, during sport or while at home. Prevention strategies tend to relate to the specific setting where there is increased risk of an injury occurring. This section discusses traumatic SCI prevention by cause. 45
International Perspectives on Spinal Cord Injury
Road traffic crashes While the contexts and precise mechanisms vary between and within regions, road traffic crashes are the most common cause of SCI worldwide. As with the global road crash statistics (see Chapter 2), the incidence of SCI is higher among young adults and among males (5–7). Reducing the incidence of road traffic crashes is therefore a significant element in preventing SCI and can be addressed in the pre-crash, crash and postcrash phases first described by Haddon (8) (see Table 3.1).
The adoption of a safe systems approach to road traffic crash prevention has been central in reducing death and disability associated with road traffic crashes in high-income countries (Figure 3.1) (9, 12). This approach recognizes that the interaction of vehicles of all kinds with different types of road users in a shared space is likely to result in collisions, and that if the components (vehicles, people and roads) and their interactions are not properly managed (system design) this will contribute to crashes resulting in severe injury and fatalities (9). The safe
The safe systems approach to crash prevention
systems approach seeks to identify and rectify the major sources of “error” within each of the pre-crash, crash and post-crash phases. For example, the main risk factors for vehicle occupants are well known: excessive or inappropriate speed, non-use of seat-belts and child restraints, and driving while under the influence of alcohol or recreational drugs (13). The development and implementation of action plans with reduction targets informed by crash data and evidence-based interventions are key components of the safe systems approach (12, 14). The successful implementation of road safety action plans requires effective advocacy, broad-based community acceptance, multisectoral intragovernmental cooperation with an identified lead agency (for example a stand-alone agency within the Ministry for Transport), and the cooperation of industry and nongovernmental organizations (NGOs) such as automobile associations, the medical profession and road safety advocacy groups (9). The safe systems approach is holistic and cyclical, comprising: ■ problem identification; ■ formulation of strategies; ■ implementation of selected policies; ■ evaluation, fine-tuning and re-evaluation.
Table 3.1. The Haddon matrix applied to road traffic injury prevention Phase Human Pre-crash Crash prevention Information Attitudes Impairment Police enforcement Use of restraints Impairment First-aid skill Access to medics Factors Vehicles and Equipment Roadworthiness Lighting Braking Handling Speed management Occupant restraints Other safety devices Crash-protective design Ease of access Fire risk Environment Road design and road layout Speed limit Pedestrian facilities
Crash
Injury prevention during the crash Life sustaining
Crash-protective roadside objects Rescue facilities Congestion
Post-crash Source (9).
46
Chapter 3 Prevention of spinal cord injury
Figure 3.1. The “safe systems” approach to road safety
Sources (10, 11).
■ promulgating and enforcing appropriate
The measures involved may include:
laws around drinking and driving, speeding, seat-belt and helmet use, etc.; ■ educating the public about road safety through social marketing, public relations activities, etc.; ■ engineering safety countermeasures, including airbags, restraint systems and road design. The safe systems approach has proved critical to the observed reductions in road traffic crashes, and a road safety systems evidence base is being continually updated (9, 12). Knowledge and technology transfer from high-income countries to middle- and lowincome countries – taking into account the differences in the road environment, vehicle fleet, vehicle uses and unique resource constraints – is critical for addressing projected future increases in crash-related mortality and morbidity (15).
While individual interventions specific to SCI should be implemented (16, 17) (see Box 3.1), the greatest gains will be made by implementing a systems approach – focusing on the road environment holistically (e.g. land use, access to and for communities, proximity to housing and other amenities) – taking into account the needs and abilities of all road users, and designing and promoting vehicles that protect not only their occupants but also the well-being of other road users who may make contact with the vehicles in the event of a crash (9, 12). A summary of interventions for road traffic crashes is shown in Table 3.2. While these interventions mainly concern vehicles, a typical environmental modification would be traffic calming measures (e.g. roundabouts, rumble strips, vehicle separation, and so on) that have the potential to reduce the rates of all types of road traffic crashes in urban areas. 47
Specific interventions to reduce spinal cord injury among vehicle users
International Perspectives on Spinal Cord Injury
Box 3.1.
Rollover crashes increase the risk of spinal cord injury
Matilda was driving her boyfriend’s car alone on a Sunday morning following a 30th birthday party at a friend’s farm. She had been drinking alcohol into the early hours and had very little sleep. The car drifted onto the hard shoulder of the road, which was poorly constructed with a significant drop. Within a fraction of a second, the vehicle was out of control. The inside front tyre caught the edge, causing the car to roll over. The crash was severe, as were Matilda’s injuries − a neck fracture and dislocation that left Matilda tetraplegic. Matilda’s story is typical. Crashes where the car rolls over are associated with severe injuries. An occupant’s head can come into contact with the roof of the vehicle when the vehicle is turned over and the occupant is upside down, with the weight of the body resting on the neck (16, 18, 19). The resulting axial compression is associated with cervical spine fracture-dislocations. Rollover crashes are relatively common, particularly in rural areas where high speeds and poorly maintained vehicles and infrastructure are risk factors. Measures to reduce the incidence and impact of rollover crashes include:
■■ regulatory approaches that include the introduction of rollover protection standards for vehicles (20); ■■ the use of electronic stability control within cars, i.e. a computerized technology that improves the safety of a vehicle’s stability by detecting and reducing skidding (21, 22);
■■ the installation of barrier systems and road shoulder sealing to promote safe roadsides (23); ■■ interventions to counter speeding, fatigue and drink-driving. Specific interventions include:
■■ Mandatory standards for the design of vehicle seating that specify height requirements for head restraints, as well as sophisticated seat design, can mitigate the likelihood and severity of cervical spine soft-tissue sprains, i.e. whiplash-type injuries (24 –26 ). ■■ Correctly used three-point seat-belt systems prevent severe head strikes against interior vehicle structures, which are associated with tension-flexion injuries (24, 27, 28), prevent ejection from the vehicle (29), and are effective in reducing thoraco-lumbar injuries. Enforcement, coupled with behavioural interventions such as seat-belt reminder systems, has been shown to ensure high levels of seat-belt use (20, 30). ■■ Child restraint systems that are appropriate to the age and weight of the child are critical in decreasing the risk of injury to infants and children, and are preferable to two-point lap-belts, which have been associated with thoraco-lumbar and abdominal injuries (13, 31–33). ■■ While the role of motorcycle helmets in preventing traumatic brain injury is now well accepted, their role in preventing cervical spinal cord injuries is unclear. More research is needed to determine whether they offer protection (34).
Protecting other road users
The challenges of preventing SCI and other injuries for vulnerable road users (motorcyclists, pedestrians and cyclists) are complex and rely on behavioural interventions that are designed to reduce crash risk and to provide safe road environments that ensure the appropriate separation of pedestrians and cyclists from vehicles. These challenges are particularly pressing in low- and middle-income countries where the level of motorization is increasing rapidly and yet the 48
dominant modes of transport remain walking, cycling and unsafe vehicles such as overcrowded pick-up trucks with no occupant restraint measures (9). This higher traffic volume is associated with an increased exposure to crash risk, while the problem is compounded if the pace of infrastructure development is slow. It is within this context that technology transfer and adoption of “safe system” interventions have considerable scope to bring about rapid reductions in trafficrelated mortality, morbidity and disability (44).
Chapter 3 Prevention of spinal cord injury
Table 3.2. Summary of interventions for road traffic crashes Interventions that work and should be implemented widely Legislating and enforcing drink-driving laws (including a blood alcohol concentration limit of 0.05 g/dl for all road users and lower for novice drivers, the use of random breath-testing, minimum age for purchase of drinks, point-of-sale control) (9) Use of seat-belts (36) Use of child passenger restraints (35) Motorcycle helmets (34, 40) Setting and enforcing speed limits (including use of speed cameras, reduced speeds around schools, hospitals, etc.) Daytime running lights for motorcycles (9) Road designs that separate pedestrians and twowheelers from cars and heavier vehicles (9, 12, 41) Area-wide traffic calming measures (42) Graduated driver licensing systems (43) Promising, more evaluations needed Use of booster seats for children that have outgrown child seats (35) Ineffective or detrimental, should be discouraged Road safety education without accompanying legislative changes or measures to make road environments or vehicles safer School-based driver education (37, 38) Putting babies or children on a seat with an airbag (39)
Falls In addition to road traffic crashes, falls also contribute significantly to SCI. Four patterns have been recognized as resulting in SCI, namely: ■ falls on the same level (e.g. playing sports, tripping over a carpet, falling while carrying a heavy load [see Box 3.2]); ■ falls from heights of less than one metre (e.g. falling down stairs, falling off a low wall); ■ falls from heights of one metre or more (e.g. falling from a building or a horse); ■ being struck or crushed by a falling object (e.g. collapse of a mine shaft). Many severe falls occur while at work or playing sport, or in unsafe homes or residences. In the home, falls can occur on stairs or because of other obstacles, and are especially prevalent among the elderly and the very young. The prevention of falls can be improved by alterations to the living environments of older people, such as the elimination of clutter, loose carpets and uneven floor surfaces, and the provision of good
lighting, hand rails and appropriate level seats, toilets and beds (48). Programmes to assess balance can identify those at risk and can lead to the implementation of measures to improve balance and prevent falls, such as exercise classes and the provision of appropriate assistive devices (e.g. walkers) and training of users in their use and maintenance. Fall prevention includes modifying the environment, putting in place laws and regulations, educating the population with regard to risks, and providing immediate post-fall management. A summary of interventions can be seen in Table 3.3.
Violence The use of firearms (used both for assaults, for self-harm or unintentionally fired) is one of the most common causes of injuries to the spinal cord, with sub-Saharan Africa having the highest reported proportion of violence-related SCI in the world (38% of all cases of SCI) (52). Knives and other sharp objects can also be used 49
International Perspectives on Spinal Cord Injury
Box 3.2.
Falls while carrying a load on the head
In many low-income countries people carry loads on their heads. Porters regularly carry weights as heavy as 100 kg on their heads. This practice has been observed in Bangladesh (45), Ghana (46 ) and Sierra Leone (47 ). In Bangladesh the people who sustain cervical SCI caused by falling while carrying a heavy load on the head – in most cases a load of farm produce, fertilizer or rice – are often poor young men working as porters, and farmers. The risk of SCI due to falling while carrying a heavy load on the head is greatly increased for new and unskilled carriers, for children, and when the load exceeds 50 kg (45). As the carrier must keep his or her head erect at all times to maintain the balance of the load, it is very difficult to observe the path or road on which he or she is walking. Uneven or slippery surfaces often cause falls. Sixty per cent of cases occur in rural locations, on farmland or muddy tracks. The falling individual loses balance and the combination of the force of the fall and the force of the heavy load combine to result in a high-energy incident. The person is unable to push the heavy load off his or her head, or to control the abnormal neck movement caused by the weight and momentum of the load. This effectively converts a low-energy fall into a high-energy fall, resulting in SCI. Governments may easily overlook the extent of this problem, because these injuries typically occur in rural communities and affect poor individuals with no influence. Unemployment is often rife and injured workers are easily replaced. The profound impact of these injuries to the individual and his/her family, however, is incalculable. Prevention can be achieved by moving to an alternative method of carrying the load. Wheelbarrows can carry heavier loads and are durable and safer. Promotion of the wheelbarrow as an alternative would require government regulation and support, and possibly also subsidies to make wheelbarrows an attractive alternative for employers. The process of identifying situations in which there is scope for injury prevention in occupational settings involves careful analysis both of the mechanics underlying the falls and of the sequence of events that ultimately leads to injuries.
Table 3.3. Summary of falls interventions Fall category Interventions that work and should be implemented widely Floor clear of clutter and loose rugs, provision of good lighting, handrails and appropriate level furniture Window guards in high-rise buildings, barriers on roofs (49) Safe harvest equipment* Promising, more evaluations needed Ineffective or detrimental, should be discouraged Educational programmes working in isolation Enforcement of building regulations (50) Education of parents of young children on risk of falls related to specific products (51) Workplace regulations that limit weights carried on head and ages of workers* Educational programmes working in isolation
Falls on the same level
Falls from more than one metre, e.g. high-rise buildings, rooftops, trees
Struck or crushed by heavy object, e.g. carrying objects on head
Wheelbarrows where applicable
* The interventions are unlikely to be applicable in all settings, especially in low-income countries where labour laws may be lacking or not enforced.
50
Chapter 3 Prevention of spinal cord injury
to inflict penetrating injuries that result in SCI (53). Injuries to the spinal cord resulting from bomb explosions have also been reported (54). A small proportion of falls from height are also caused by intentional self-harm. There is some evidence to suggest that, as would be expected, jurisdictions with restrictive firearms legislation and lower firearms ownership tend to have lower levels of gun violence. Restrictive firearm licensing and purchasing policies – including bans, licensing schemes, minimum ages for buyers, background checks – have been implemented and appear to be effective in countries such as Australia, Austria, Brazil and New Zealand. Studies in Colombia and El Salvador indicate that enforced bans on carrying firearms in public may reduce homicide rates (55). Multifaceted strategies are also needed to reduce demand for guns – for instance, by diverting vulnerable youth from gang membership. With regard to knives and other sharp objects, governments need, in addition to control measures, broad strategies to reduce socioeconomic factors that underlie the violent use of these weapons. Less evidence is available on the impact of efforts to reduce violence associated with sharp objects, e.g. knives, than on that of efforts to reduce violence associated with firearms. Until now concerned authorities have focused on similar measures to those used for the control of firearms. In the United Kingdom these have included legislative reforms (e.g. bans on flick-knives, a minimum age for purchasers), stiffer enforcement (“stop-and-search” initiatives) and weapon amnesties. However, the impact of these measures is not yet clear (55). Strategies to prevent violence, other than those aimed at reducing access to lethal means such as guns and knives described above, include the following: developing safe, stable and nurturing relationships between children and their parents and caregivers to prevent child maltreatment and other forms of violence later in life; developing life skills in children and adolescents to prevent future involvement in youth vio-
lence; reducing the availability and harmful use of alcohol, which is a risk factor for all forms of violence; promoting gender equality to prevent violence against women; changing cultural and social norms that support violence; and victim identification, care and support programmes.
Causes of non-traumatic spinal cord injury Prevention of non-traumatic SCI depends on wider measures for both public health and disease control. Preventable non-traumatic causes of spinal cord dysfunction include: ■ communicable diseases − tuberculosis (TB) and human immunodeficiency virus (HIV); ■ noncommunicable conditions − cancer, degenerative diseases such as osteoarthritis leading to spinal stenosis, cardiovascular disease; ■ nutritional deficiencies – neural tube defects, vitamin B12 deficiency (56); ■ complications of medical care. Some prevention strategies related to each group of conditions are discussed below and summarized in Table 3.4. Infections such as TB are more prevalent in low- and middle-income countries than in highincome ones. Spinal tuberculosis occurs in about 1−2% of people with TB and, given the prevalence of TB, may account for up to 20% of spinal conditions seen in some settings (58, 64). The prevalence of spinal TB has increased with the rise of HIV infection (65 – 67). Common clinical presentations include back pain, fever, weight loss and neurological deficit (68). Preventing SCI from arising as a result of TB depends on early detection and treatment (69). Spinal TB can be identified through biopsy or magnetic resonance imaging (MRI). However, these services may not be readily accessible in low- and middle-income countries, thus delaying diagnosis (70). Treatment for spinal TB includes taking a complete 51
International Perspectives on Spinal Cord Injury
Table 3.4. Summary of interventions to prevent non-traumatic spinal cord injuries Cause Infections (e.g. TB, HIV) Interventions that work and should be implemented widely Vaccines (Bacille Calmette–Guérin for TB) Early identification and drug treatment of spinal TB (58) Early diagnosis and treatment Fortification of wheat and maize flours with folic acid and other micronutrients (59); oral daily folic acid supplementation three months before and after conception (60, 61). None known Promising, more evaluations needed Treatment with highly active antiretroviral therapy (HAART) for HIV (57 )
Cancer Spina bifida
Intermittent iron and folic acid supplementation during the reproductive years (62, 63)
Degenerative conditions of the spinal cord
course of anti-tuberculosis medication and may, if indicated, include spinal surgery. Cancer that spreads to the spine can compress the spinal cord and nearby spinal structures. If this is not treated, it can lead to pain, paralysis and incontinence. Prevention of cancer spreading to the spine depends on early detection and treatment, particularly of cancers involving breast, lung and prostate (71). Treatments to reduce the pressure on the spinal cord when spinal tumours occur can include radiotherapy, surgery, pharmacotherapy and chemotherapy (72 , 73). Although several influencing factors have been associated with neural tube defects, increased folic acid intake has been shown to be a viable, economic nutritional intervention in their prevention (74, 75). A meta-analysis of available data underlines these findings (see Box 3.3). About 63 countries mandatorily fortify wheat flour with folic acid (91), which has resulted in documented reductions in incidence of spina bifida (77, 92, 93). Periconceptional folic acid supplementation (three months before and after conception) has been shown to reduce the rate of infants born with neural tube defects, including spina bifida (60, 61). For example, an Israeli study demonstrated that three years after implementing folic acid supplementation (2002 and 2004) the incidences of spina bifida decreased from 14.4 to 8.9 per 10 000 live births 52
(84). Awareness campaigns can raise knowledge of folic acid levels significantly (94) but sustained campaigning to promote periconceptional consumption is necessary for success.
Activities, places and circumstances associated with spinal cord injuries Occupational injuries A significant proportion of accidents leading to SCI occur in the workplace (95, 96), particularly in the construction, agriculture and mining industries (95, 96). The most frequent external causes in work environments are falls from heights and being struck or crushed by a falling object (96). Spinal cord and other major injuries frequently occur in underground mining, where the main working area is a horizontal tunnel while initial access into the earth is either vertical or sloping. While mining activities in highincome countries are often well organized and highly regulated (97–99), low-income countries with poverty, high unemployment, weak law enforcement, and corruption may have unsafe mining practices. For example in Africa there are increasing numbers of small and informal sector mining operations that have inadequate health
Chapter 3 Prevention of spinal cord injury
Box 3.3.
Interventions to prevent spina bifida
Spina bifida is a birth defect that affects pregnancies worldwide. A systematic review of spina bifida incidence found a range of incidence rates, from 2.3 per 10 000 in Brazil (76 ) to 32.1 per 10 000 in Oman (77 ). A meta-analysis conducted for this report calculated an overall incidence rate of 8.4 per 10 000 (see Technical appendix C for methods and terminology used). This overall incidence rate does not reflect the variation in incidence rates from studies reporting different pregnancy and birth type data (see Chapter 2). Overall incidence rates of spina bifida are about 4.5/10 000 in studies that use live birth data, while those that use live and stillbirth data or live, stillbirth, and termination of pregnancy (TOP) data report incidence rates of about 10.0/10 000 and 9.1/10 000 respectively. Consumption of folic acid supplements has been shown to significantly reduce the risk of pregnancies affected by spina bifida or other neural tube defects (NTDs) by around 50% (78). As the neural tube closes early in embryonic development (28 days after conception), the ideal time period for consumption of folic acid is before pregnancy (79). Many pregnancies are unplanned, and unfortunately educational campaigns aiming to encourage women to increase their supplement use have been ineffective at reaching populations of higher risk, i.e. low socioeconomic status, poor education, immigration status, unplanned pregnancy, etc. (80). To counteract this issue, some countries have chosen to introduce legislation implementing mandatory folic acid food fortification (FAFF) for a variety of foods (81). FAFF has been proven to improve folic acid status; since mandatory FAFF, the USA, Canada and Western Australia have seen reductions in the prevalence of NTDs of 15–50% (82). Despite the proven efficacy of FAFF legislation, FAFF has not been implemented worldwide, and legislation for mandatory FAFF exists only in the Americas (with the exception of Venezuela) and Australia. There is also partial coverage in the African, Western Pacific and South-East Asia Regions, as well as in the majority of the Eastern Mediterranean Region. Some coverage for FAFF exists in the European Region, but only in eastern European countries (i.e. Republic of Moldova, Kazakhstan, Uzbekistan, Kyrgyzstan and Turkmenistan).
Meta-analysis of the effect of folic acid food fortification on spina bifida incidence rates Country Reference
0.2
0.4
0.6
0.8 1 Incidence rate ratio FAFF increases risk of SB
FAFF reduces risk of SB
Sources: a (83); b (76); c (84); d (77 ); e (85 ); f (86); g (87 ); h (88); i (89); j (90); k (80).
continues … 53
International Perspectives on Spinal Cord Injury
… continued The figure above shows the results of a meta-analysis that used data collected from studies reporting on incidence rates pre- and post-FAFF. The meta-analysis shows an overall effect size (incidence rate ratio) of 0.43 (95% confidence interval 0. 39–0.63) when using only those studies that included live births and stillbirths in their study population. With these considerations, worldwide FAFF legislation could potentially reduce spina bifida births by roughly 38 000 per year (see Technical appendix D for methods used). Although there are proven advantages to FAFF, many countries, especially those in western Europe, have been reluctant to introduce FAFF legislation, as a result of possible health concerns regarding increased folate consumption, coupled with the lack of autonomy some view as implicit in mandatory FAFF. Currently many countries without mandatory FAFF have recommendations for women of reproductive age to take folic acid supplements, and, although this has proved to provide some benefit, it has mainly been restricted to women of higher socioeconomic status. Therefore, additional research needs to be conducted to support informed policy decisions and adequately address concerns of adverse effects.
and safety mechanisms (100, 101). Mining injury incidents may not be reported to the authorities, and statistics may not be well maintained. The mining industry, however, offers an example of a prevention programme (see Box 3.4). Box 3.4.
Strategies for injury prevention in the workplace may include developing and implementing labour laws, a code of practice on safety and health specific to each sector, and the implementation of science-based prevention activities (103–106).
Preventing fatalities and injuries associated with mining in South Africa
In South Africa, the availability of data on mining fatalities and injuries has made it possible for the outcomes of the injury prevention programme to be measured, for milestones to be identified, and for future prevention targets to be set. This systematic public health approach used by the Government included:
■■ Obtaining data on the magnitude of the problem: i.e. the number of mining fatalities and injuries, for example by mine location and commodity (gold, coal, etc);
■■ Hazard identification: geological, hydrological, seismological and rock evacuation processes; ■■ Risk analysis and assessment: including the identification for each hazard of how people are exposed, the ■■ ■■ ■■ ■■ likelihood and frequency of exposure and the possible consequences (including serious injury such as SCI); risk assessment involves determining the level of risk and ranking in order of severity; Identification of protective factors: those actions that can eliminate or reduce the risk; Design and implementation of interventions to control risk: e.g. modify the working environment, address equipment design, institute new rules to reduce exposure to risks, and provide information and training, for example on inspections and safety audits; Strengthen enforcement provisions and address offences Monitor and review: to ensure that changing circumstances do not alter the effectiveness of control measures.
As a result of this process, there has been a significant reduction in both fatal and serious workplace injuries in the South African mining industry. The figure below shows the fall in the rate of fatalities from collapsing mine roofs – the largest single cause of injuries − from 0.14 per million hours worked in January 2003 to 0.05 per million hours in 2011. Injuries from the same cause decreased by 51% from 1.41 per million hours in 2003 to 0.72 per million hours in January 2011.
continues …
54
Chapter 3 Prevention of spinal cord injury
… continued South Africa (RSA) mining fatalities and injuries due to roof collapses (2003–2011) Rates of fatalities and injuries (per million hours worked)
1.6 1.4 1.2 1.0 0.8 0.6 0.4 0.2 0 0.14 0.15 0.13 0.09 0.08 1.41 1.34 1.23
RSA fatality rates 1.25 1.10 1.11 1.12 1.02 1.00 0.95
RSA injury rates
Linear (RSA injury rates)
0.96
0.87
0.85 0.78 0.67 0.7 0.64 0.65 0.72 0.68 0.64
0.07
0.06
0.05 0.04
0.05 0.05 0.05 0.05 0.04
0.04
January 2003
January 2004
January 2005
January 2006
January 2007
January 2008
January 2009
January 2010
January 2011
Source: Reproduced from (102) with permission from Republic of South Africa, Department of Mineral Resources.
Sport and recreation-related injuries SCI has been reported in several sporting and recreational activities. The mechanisms for SCI in sporting and recreational settings include: ■ vehicle crashes, such as with motorcycles, quad bikes and racing cars; ■ falls on the same level, such as during rugby and skiing;
■ falling/stumbling/jumping from a height of
less than one metre, such as diving into shallow water (see Box 3.5) and falling from a child-sized pedal cycle; ■ falling / stumbling / jumping / pushed from heights of one metre or more, such as in rock climbing, paragliding, falling from a horse or from an adult-sized pedal cycle, or falls from playground equipment.
Box 3.5.
Diving as a cause of spinal cord injury
Cervical SCI − commonly at neurological level of C4 with resulting tetraplegia − is the most common form of divingrelated SCI (107–109). This type of diving injury is most often seen in men under the age of 35 (110 –112). Factors associated with diving-related SCI include a lack of diver awareness and education, diving into shallow water (1.5 m or less), lack of depth indicators and safety regulations, characteristics of the upslope in swimming pools, and consumption of alcohol (111, 113, 114). For instance, 63% of SCI in in-ground pools in Canada resulted from the diver striking the upslope between the deep and shallow ends of the pool (111). Correctly designed pools with appropriate design features can reduce the risk of SCI. Olympic pools that meet a required minimum depth of 2.7 m of water below the diving board have not reported any incidence of diving-related SCI (114). In 2010, the International Swimming Federation introduced new minimum depths of 3.2 m from a 1 m platform, and 5 m from a 10 m platform in Olympic diving facilities (115 ).
continues …
55
International Perspectives on Spinal Cord Injury
… continued Research in Australia shows that education (seven 10-minute sessions) covering suitable diving conditions (e.g. known water depth greater than three metres, absence of objects in the water, not diving into above-ground pools) and dive positions (locking thumbs, extending arms beyond the head, and steering and gliding skills) are effective in reducing dive depth and creating safer hand and arm positions (116 ). Follow-up to the diving education programme demonstrated that participants retained the information and that dives remained shallower 20 months after the initial diver education programme (117, 118). Key areas that need to be improved to reduce the amount of diving-related SCI (111, 114) include the following.
■■ National and international evidence-based design parameters for private and public pools should be established and enforced to promote diving safety.
■■ Vendors and buyers of home pools should be trained in pool safety, stressing the dangers of diving and of head-first entry into shallow water.
■■ At-risk individuals in schools and in communities should be reached through comprehensive, evidence-based education in water safety.
Research shows that sporting injuries globally account for between 7% and 18% of all SCI (119–121). The prevention of spinal cord injuries
in rugby represents a compelling example of prevention that has been successfully implemented in the context of a major team sport (see Box 3.6).
Box 3.6.
New Zealand leading the way in preventing rugby-related spinal cord injury
Rugby is a high-contact team sport. From the mid-1990s, awareness grew in rugby-playing nations such as New Zealand and South Africa that serious nonfatal injuries, including SCI, were occurring on the field during matches. Consequently data were collected (injury surveillance) to quantify the problem. The Accident Compensation Commission (ACC) and the New Zealand Rugby Union collaborated with a view “to eliminate spinal injuries within the context of a contact sport.” A study of the circumstances in which injuries occurred identified the following risks: high-risk phases in the game (the scrum, tackle, and ruck/maul); high-risk conditions and behaviours, including poor level of player fitness, high tackles, dropping the chin during a tackle; and inadequate field-side first aid (122). The frequency of rugby-related SCI in New Zealand between 1976 and 2005 is depicted in the first figure below. In response to these patterns, a comprehensive prevention programme called RugbySmart started in New Zealand. It included the following interventions: compulsory safety workshops for coaches, referees and players; compulsory seminars in which safety information and resources were disseminated; a dedicated web site; and provision of injury prevention tools such as a sideline concussion check card for coaches and referees. All coaches were required to complete RugbySmart on an annual basis, resulting in the programme reaching almost 100% of coaches and referees in the country (123). The introduction of RubgySmart correlated with a reduction in the frequency of SCI, with eight spinal injuries between 2001 and 2005 compared with 17 during the period 1996−2000 (123). As noted in the second figure below, this frequency continued to stay low, with an average of two serious injuries per year in the 11 years during which RugbySmart has been implemented.
continues …
56
Chapter 3 Prevention of spinal cord injury
… continued Frequency of rugby-related SCI according to high-risk phases in the game 20 Frequency of rugby-related SCI (per 4-year period) 18 16 14 12 10 8 6 4 2 0 1976–1980 1981–1985 1986–1990 1991–1995 1996–2000 Scrum 2001–2005 Total Tackle, ruck or maul
Source: Reproduced from (123) with permission from BMJ Publishing Group Ltd.
Reduction in serious rugby-related injuries in New Zealand following the introduction of RugbySmart Number of traumatic brain and spinal cord injuries per year 16 14 12 10 8 6 4 2 0 1998 1999 2000 2001 3 1 2002 2 2 2 2 1 2007 1 2008 2009 5 3 0 2010 2011 9 10 11
2003
2004
2005
2006
RugbySmart implemented
Source: Adapted from (124) with permission from RugbySmart, published by the New Zealand Rugby Union in conjunction with Accident Compensation Corporation.
This approach has also been adapted to the South African context. BokSmart was introduced by SA Rugby and the Players Fund in 2008. This led to improved training and provision of medical support staff or trained people able to provide field-side first aid and equipment to prevent the aggravation of injuries through poor immediate care. Other changes include improvements in coaching and selection policy, changes to the rules of the game (such as rules of scrum engagement to introduce “crouch, touch, pause and engage”) and the adoption of safety equipment (125 ).
57
International Perspectives on Spinal Cord Injury
As with most educational interventions, the degree of effectiveness remains a matter of debate and continuing research. Prevention strategies include minimizing risk through standardized requirements, providing education, and enacting and enforcing appropriate legislation and standards. An overview of prevention approaches for several sports is shown in Table 3.5.
Natural disasters Several factors influence the extent to which earthquakes and other natural disasters, such as landslides and volcanic eruptions, can cause SCI. These include the type of buildings, the
time at which the disaster occurs, and the density of the population in the affected area (131, 132). People who are inside buildings made from dry stone or unreinforced masonry at the time of an earthquake have an increased risk of injury compared to those inside buildings with wooden frames (131). Earthquakes that occur when the majority of people are inside high-risk buildings are more likely to result in higher numbers of injuries. While natural disasters may not be preventable, building collapse can be reduced, for instance by enforcing appropriate building codes to ensure that the infrastructure is resistant to earthquakes.
Table 3.5. Summary of interventions to prevent spinal cord injuries in sporting activities Sport Interventions that work and should be implemented widely Mandatory safety training for coaches and referees (123) Promising, more evaluations needed Safer rules for high-risk phases (122, 125) Education and training in safety measures, e.g. Alpine Responsibility Code (126) Marking ski track dangers and barriers around hazards (126) Safety vests (127 ) Educational interventions, diving instruction (116 –118, 128) Ineffective or detrimental, should be discouraged
Rugby Skiing and snowboarding
Horseback riding Diving Legislation and enforcement of safe pool design, e.g. depth, lighting, diving board height and elasticity (114), prohibiting use of alcohol around water sports Playground standards for the depth of appropriate surface material, height of equipment and maintenance (129) Early access to decompression chamber (130)
Tying child riders to the saddle
General field sports
Deep sea diving
58
Chapter 3 Prevention of spinal cord injury
Conclusion and recommendations SCI is largely predictable and preventable. Substantial research and development over the past 30 years has resulted in interventions proven to reduce incidence of SCI due to a variety of causes − road traffic crashes, falls, violence − and due to activities such as working and playing sport. The gap between what is known to be effective and what is practised is considerable. Despite attempts to find and document examples of good SCI prevention programmes in low- and middle-income countries, examples are few. This does not mean that the interventions presented in this chapter will not work in low- and middle-income countries; indeed many do. The strategies, however, need to be tested and adapted to local contexts and conditions. Governments and others involved in prevention are encouraged to consider the following areas for action: ■ Continue to invest in primary prevention programmes that have been shown to be effective, taking SCI into consideration (e.g. by requiring mandatory standards that specify height requirements for head restraints in vehicles). Furthermore, implement specific actions to prevent or control SCI in activities such as high-risk occupations and sports (e.g. educational programmes for rugby injury prevention).
■ Strengthen the health system to identify and
■ ■
■
■
treat people at risk of non-traumatic SCI related to communicable diseases, noncommunicable conditions and nutritional deficiencies. Raise awareness about how to prevent SCI in ways that are not demeaning to those who already have SCI. Define priorities for research on the prevention of SCI. Many widely practised prevention interventions lack a firm evidence base (e.g. diving lessons). Risk factor analysis and intervention evaluation are key to determining which interventions are effective and therefore should be promoted, and which ones are ineffective or harmful and should be discouraged. Involve all relevant sectors and stakeholders. Preventing SCI involves multiple sectors – such as infrastructure, health, industry, sport and education − in addressing the different causes, activities or settings associated with SCI. One entity needs to take the lead to ensure that implementation goes ahead and that the contributions from different sectors are delivered and sustained. Encourage agencies in charge of prevention programmes to collaborate with researchers so that incidence data can inform prevention strategies and researchers can be involved in the monitoring and evaluating of the resulting prevention campaigns.
References Tharion G, Nagarajan G, Bhattacharji S, eds. Prevention of spinal cord injury. In: Guidelines for care of persons with spinal cord injury in the community. Vellore, Christian Medical College. 2009. 2. Shakespeare T. Still a health issue. Disability and Health Journal, 2012, 5:129-131. doi: http://dx.doi.org/10.1016/j. dhjo.2012.04.002 PMID:22726851 3. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr. org/english/law/disabilities-convention.htm, accessed 9 May 2012) 4. Wang CC. Portraying stigmatized conditions: disabling images in public health. Journal of Health Communication, 1998, 3:149-159. doi: http://dx.doi.org/10.1080/108107398127436 PMID:10977251 5. NSCISC. Annual report for the spinal cord injury model systems:2008 Birmingham, AL, National Spinal Cord Injury Statistical Centre, 2008 (https://www.nscisc.uab.edu/PublicDocuments/reports/pdf/2008%20NSCISC%20Annual%20Statistical%20 Report%20-%20Complete%20Public%20Version.pdf, accessed 9 April 2012). 1.
59
International Perspectives on Spinal Cord Injury
Henley G. Spinal cord injury, 1999−2005. NISU briefing No. 14, Cat. No. INJCAT 124. Canberra, Australian Institute of Health and Welfare, 2009 (http://www.aihw.gov.au/publication-detail/?id=6442468241, accessed 9 April 2012). 7. Sekhon LH, Fehlings MG. Epidemiology, demographics, and pathophysiology of acute spinal cord injury. Spine, 2001, 26 Suppl:S2-S12. doi: http://dx.doi.org/10.1097/00007632-200112151-00002 PMID:11805601 8. Haddon W. Advances in the epidemiology of injuries as a basis for public health policy. Public Health Reports, 1980, 95:411421. PMID:7422807 9. Peden M et al., eds. World report on road traffic injury prevention. Geneva, World Health Organization, 2004. 10. WHO. Global status report on road safety: time for action. Geneva, World Health Organization, 2009 (www.who.int/violence_injury_prevention/road_safety_status/2009, accessed 9 April 2012). 11. Newton J. Road safety – Partnership programme. Shared responsibility. Western Australia, Office of Road Safety, 2008. 12. OECD. Towards zero. Ambitious road safety targets and the safe system approach. Paris, Organisation for Economic Co-operation and Development, 2008 (http://www.oecd-ilibrary.org/transport/towards-zero_9789282101964-en, accessed 5 May 2012). 13. Rasouli MR. Preventing motor vehicle crashes related spine injuries in children. World Journal of Pediatrics, 2011, 7:311-317. doi: http://dx.doi.org/10.1007/s12519-011-0327-z PMID:22015724 14. Elvik R. Area-wide urban traffic calming schemes: a meta-analysis of safety effects. Accident; Analysis and Prevention, 2001, 33:327-336. doi: http://dx.doi.org/10.1016/S0001-4575(00)00046-4 PMID:11235794 15. Mohan D, Tiwari G. Road safety in low-income countries: issues and concerns regarding technology transfer from highincome countries. In: Reflections on the transfer of traffic safety knowledge to motorising nations. Melbourne, Global Traffic Safety Trust, 1998:27–56. 16. O’Connor PJ, Brown D. Relative risk of spinal cord injury in road crashes involving seriously injured occupants of light passenger vehicles. Accident; Analysis and Prevention, 2006, 38:1081-1086. doi: http://dx.doi.org/10.1016/j.aap.2006.04.013 PMID:16756930 17. Haworth N et al. Characteristics of fatal single vehicle crashes. Report 120. Clayton, Monash University Accident Research Centre, 1997. 18. McElhaney JH et al. Biomechanical aspects of cervical trauma. In: Nahum AM, Melvin JW, eds. Accidental injury – biomechanics and prevention. 2nd ed. New York, NY, Springer-Verlag, 2002. 19. Viano DC, Chantal S, Parenteau CS. Analysis of head impacts causing neck compression injury. Traffic Injury Prevention, 2008, 9:144-152. doi: http://dx.doi.org/10.1080/15389580801894940 PMID:18398778 20. O’Neill B. Preventing passenger vehicle occupant injuries by vehicle design − a historical perspective from IIHS. Traffic Injury Prevention, 2009, 10:113-126. doi: http://dx.doi.org/10.1080/15389580802486225 PMID:19333823 21. MacLennan PA et al. Vehicle rollover risk and electronic stability control systems. Injury Prevention, 2008, 14:154-158. doi: http://dx.doi.org/10.1136/ip.2007.016576 PMID:18523106 22. European Road Safety Observatory. eSafety. Brussels, European Commission, 2006 (http://ec.europa.eu/transport/wcm/ road_safety/erso/knowledge/Fixed/04_esave/esafety.pdf, accessed 21 March 2012). 23. Corben B et al. The general effectiveness of countermeasures for crashes into fixed roadside objects. Report 111. Clayton, Monash University Accident Research Centre, 1997. 24. Soloman L, Warwick D, Nayagam S. Apley’s system of orthopaedics and fractures, 8th ed. London, Arnold, 2001. 25. Viano DC. Seat design principles to reduce neck injuries in rear impacts. Traffic Injury Prevention, 2008, 9:552-560. doi: http://dx.doi.org/10.1080/15389580802381939 PMID:19058102 26. Farmer CM et al. Relationship of dynamic seat ratings to real-world neck injury rates. Traffic Injury Prevention, 2008, 9:561567. doi: http://dx.doi.org/10.1080/15389580802393041 PMID:19058103 27. Fitzharris M et al. Crash-based evaluation of Australian Design Rule 69: (Full FrontalIimpact Occupant Protection). Canberra, Australian Transport Safety Bureau, 2006 (http://www.infrastructure.gov.au/roads/safety/publications/2006/pdf/ Grant_Report200603.pdf?bcsi_scan_C7A381BA8BD8A412=0&bcsi_scan_filename=Grant_Report200603.pdf, accessed 21 March 2012). 28. Morris A, Welsh R, Frampton R. An overview of requirements for the crash protection of older drivers. Annu Proc Assoc Adv Automto Med, 2002, 46:141–156. 29. Ferguson SA, Schneider LW. An overview of frontal air bag performance with changes in frontal crash-test requirements: findings of the Blue Ribbon Panel for the evaluation of advanced technology air bags. Traffic Injury Prevention, 2008, 9:421431. doi: http://dx.doi.org/10.1080/15389580802046250 PMID:18836952 30. Lie A et al. Intelligent seat belt reminders − do they change driver seat belt use in Europe? Traffic Injury Prevention, 2008, 9:446-449. doi: http://dx.doi.org/10.1080/15389580802149690 PMID:18836955 31. Winston FK, Durbin D. When “buckle up” is not enough: enhancing the safety of children in motor vehicles. Leonard Davis Institute Issue Brief, 2000, 5:1–4.
6.
60
Chapter 3 Prevention of spinal cord injury
32. Achildi O, Betz RR, Grewal H. Lapbelt injuries and the seatbelt syndrome in pediatric spinal cord injury. The Journal of Spinal Cord Medicine, 2007, 30 Suppl. 1:S21-S24. PMID:17874682 33. Durbin DR et al. Effects of seating position and appropriate restraint use on the risk of injury to children in motor vehicle crashes. Pediatrics, 2005, 115:e305-e309. doi: http://dx.doi.org/10.1542/peds.2004-1522 PMID:15741356 34. Liu BC et al. Helmets for preventing injury in motorcycle riders. Cochrane database of systematic reviews, 2008, 23:CD004333. 35. Zaza S et al. Reviews of evidence regarding interventions to increase use of child safety seats. American Journal of Preventive Medicine, 2001, 21 Suppl:31-47. doi: http://dx.doi.org/10.1016/S0749-3797(01)00377-4 PMID:11691560 36. National Highway Traffic Safety Administration. Traffic safety facts 2004: occupant protection. Washington, DC, National Highway Traffic Safety Administration, 2004. 37. Ian R et al. School based driver education for the prevention of traffic crashes. Cochrane database of systematic reviews, 2001, 3:CD003201. PMID:11687049 38. Dellinger A et al. Interventions to prevent motor vehicle injuries. In: Doll L et al., eds. Handbook of injury and violence prevention. New York, NY, Springer, 2007:55–79. 39. Cummings P et al. Air bags and passenger fatality according to passenger age and restraint use. Epidemiology (Cambridge, Mass.), 2002, 13:525-532. doi: http://dx.doi.org/10.1097/00001648-200209000-00007 PMID:12192221 40. Passmore JW et al. The formulation and implementation of a national helmet law: a case study from Viet Nam. Bulletin of the World Health Organization, 2010, 88:783-787. doi: http://dx.doi.org/10.2471/BLT.09.071662 PMID:20931064 41. Elvik R, Vaa T, eds. The handbook of road safety measures. Amsterdam, Elsevier Science Ltd, 2004. 42. Bunn F et al. Area-wide traffic calming for preventing traffic related injuries. Cochrane database of systematic reviews, 2003, 1:CD003110. PMID:12535454 43. Hedlund J, Compton R. Graduated driver licensing research in 2004 and 2005. Journal of Safety Research, 2005, 36:109-119. doi: http://dx.doi.org/10.1016/j.jsr.2005.02.001 PMID:15896351 44. Stevenson M et al. Reducing the burden of road traffic injury: translating high-income country interventions to middle-income and low-income countries. Injury Prevention, 2008, 14:284-289. doi: http://dx.doi.org/10.1136/ip.2008.018820 PMID:18836043 45. Hoque MF, Grangeon C, Reed K. Spinal cord lesions in Bangladesh: an epidemiological study 1994−1995. Spinal Cord, 1999, 37:858-861. doi: http://dx.doi.org/10.1038/sj.sc.3100938 PMID:10602529 46. Jumah KB, Nyame PK. Relationship between load carrying on the head and cervical spondylosis in Ghanaians. West African Journal of Medicine, 1994, 13:181-182. PMID:7841112 47. Jäger HJ et al. Degenerative changes in the cervical spine and load-carrying on the head. Skeletal Radiology, 1997, 26:475481. doi: http://dx.doi.org/10.1007/s002560050269 PMID:9297752 48. Demura S et al. Selection of useful items for fall risk screening for community dwelling Japanese elderly from the perspective of fall experience, physical function, and age level differences. Archives of Gerontology and Geriatrics, 2011, 53:123-130. doi: http://dx.doi.org/10.1016/j.archger.2010.11.012 PMID:21131069 49. Spiegel CN, Lindaman FC. Children can’t fly: a program to prevent childhood morbidity and mortality from window falls. American Journal of Public Health, 1977, 67:1143-1147. doi: http://dx.doi.org/10.2105/AJPH.67.12.1143 PMID:596496 50. Barlow B et al. Ten years of experience with falls from a height in children. Journal of Pediatric Surgery, 1983, 18:509-511. doi: http://dx.doi.org/10.1016/S0022-3468(83)80210-3 PMID:6620098 51. Peden M et al., eds. World report on child injury prevention. Geneva, World Health Organization, 2008. 52. Cripps RA et al. A global map for traumatic spinal cord injury epidemiology: towards a living data repository for injury prevention. Spinal Cord, 2011, 49:493-501. doi: http://dx.doi.org/10.1038/sc.2010.146 PMID:21102572 53. Krug E et al., eds. World report on violence and health. Geneva, World Health Organization, 2002. 54. Zeilig G et al. Civilian spinal cord injuries due to terror explosions. Spinal Cord, 2010, 48:814-818. doi: http://dx.doi. org/10.1038/sc.2010.22 PMID:20309003 55. WHO. Guns, knives, and pesticides: reducing access to lethal means. Geneva, World Health Organization, 2009. 56. Wee JYM, Schwarz R. An international comparative study assessing impairment, activities, and participation in spinal cord injury rehabilitation – a pilot study. Asia Pacific Disability Rehabilitation Journal, 2004, 15:42-52. 57. Staudinger R, Henry K. Remission of HIV myelopathy after highly active antiretroviral therapy. Neurology, 2000, 54:267-268. doi: http://dx.doi.org/10.1212/WNL.54.1.267 PMID:10636172 58. Jutte PC, van Loenhout-Rooyackers JH. Routine surgery in addition to chemotherapy for treating spinal tuberculosis. Cochrane Database of Systematic Reviews, 2006, 25:CD004532. CD004532.pub2 59. WHO/FAO/UNICEF/GAIN/MI/ FFI. Recommendations on wheat and maize flour fortification. Meeting Report: Interim Consensus Statement. Geneva, World Health Organization, 2009 (http://www.who.int/nutrition/publications/micronutrients/wheat_ maize_fort.pdf accessed 28 May 2012).
61
International Perspectives on Spinal Cord Injury
60. De-Regil LM, Fernández-Gaxiola AC, Dowswell T, Peña-Rosas JP. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database of Systematic Reviews, 2010, 6:(10)CD007950. Review. PubMed PMID: 20927767 PMID:20927767 61. Toriello HV. Policy and Practice Guideline Committee of the American College of Medical Genetics. Policy statement on folic acid and neural tube defects. Genetics in Medicine, 2011, 13:593-596. doi: http://dx.doi.org/10.1097/ GIM.0b013e31821d4188 PMID:21552133 62. Fernández-Gaxiola AC, De-Regil LM. Intermittent iron supplementation for reducing anaemia and its associated impairments in menstruating women. Cochrane Database of Systematic Reviews, 2011, 7:(12)CD009218. Review. PubMed PMID: 22161448 PMID:22161448 63. WHO. Guideline: Intermittent iron and folic acid supplementation in menstruating women. Geneva, World Health Organization, 2011. 64. Godlwana L et al. Incidence and profile of spinal tuberculosis in patients at the only public hospital admitting such patients in KwaZulu-Natal. Spinal Cord, 2008, 46:372-374. doi: http://dx.doi.org/10.1038/sj.sc.3102150 PMID:18317491 65. Moon MS. Tuberculosis of the spine. Controversies and a new challenge. Spine, 1997, 22:1791-1797. doi: http://dx.doi. org/10.1097/00007632-199708010-00022 PMID:9259793 66. Dye C, Williams BG. The population dynamics and control of tuberculosis. Science, 2010, 328:856-861. doi: http://dx.doi. org/10.1126/science.1185449 PMID:20466923 67. Chaudhary M et al. Diagnosis of tuberculosis in an era of HIV pandemic: a review of current status and future prospects. Indian Journal of Medical Microbiology, 2010, 28:281-289. doi: http://dx.doi.org/10.4103/0255-0857.71805 PMID:20966555 68. Rasit AH, Razak M, Ting FS. The pattern of spinal tuberculosis in Sarawak General Hospital. The Medical Journal of Malaysia, 2001, 56:143-150. PMID:11771073 69. Harries AD et al. The HIV-associated tuberculosis epidemic − when will we act? Lancet, 2010, 375:1906-1919. doi: http:// dx.doi.org/10.1016/S0140-6736(10)60409-6 PMID:20488516 70. Cormican L et al. Current difficulties in the diagnosis and management of spinal tuberculosis. Postgraduate Medical Journal, 2006, 82:46-51. doi: http://dx.doi.org/10.1136/pgmj.2005.032862 PMID:16397080 71. Maccauro G et al. Physiopathology of spine metastasis − review article. International Journal of Surgical Oncology, 2011,Article ID:107969, 8 pages doi: http://dx.doi.org/10.1155/2011/107969 PMID:22312491 72. George R et al. Interventions for the treatment of metastatic extradural spinal cord compression in adults. Cochrane Database of Systematic Reviews, 2008, 4:CD006716. CD006716.pub2 PMID:18843728 73. Molina CA, Gokaslan Z, Sciubba D. A systematic review of the current role of minimally invasive spine surgery in the management of metastatic spine disease. International Journal of Surgical Oncology, 2011, doi: http://dx.doi. org/10.1155/2011/598148 PMID:22312514 74. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 75. Nikkilä A, Rydhstrom H, Källén B. The incidence of spina bifida in Sweden 1973–2003: the effect of prenatal diagnosis. European Journal of Public Health, 2006, 16:660-662. doi: http://dx.doi.org/10.1093/eurpub/ckl053 PMID:16672253 76. Orioli IM et al. Effects of folic acid fortification on spina bifida prevalence in Brazil. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:831-835. doi: http://dx.doi.org/10.1002/bdra.20830 PMID:21630426 77. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 78. Centers for Disease Control and Prevention. Recommendations for the use of folic acid to reduce the number of cases of spina bifida and other neural tube defects. MMWR. Morbidity and Mortality Weekly Report, 1992, 41(RR-14):1-7. 79. Crider KS, Bailey L, Berry R. Folic acid food fortification – its history, effect, concerns, and future directions. Nutrients, 2011, 3:370-384. 80. Ray JG et al. Association of neural tube defects and folic acid food fortification in Canada. Lancet, 2002, 360:2047-2048. doi: http://dx.doi.org/10.1016/S0140-6736(02)11994-5 PMID:12504403 81. Flour Fortification Initiative website (http://www.ffinetwork.org/country_profiles/index.php, accessed 17 May 2013). 82. Cornel MC, de Smit DJ, de Jong-van den Berg LTW. Folic acid – the scientific debate as a base for public policy. Reproductive Toxicology (Elmsford, NY), 2005, 20:411-415. doi: http://dx.doi.org/10.1016/j.reprotox.2005.03.015 PMID:15978774 83. Centers for Disease Control and Prevention. Racial/ethnic differences in the birth prevalence of spina bifida – United States, 1995–2005. MMWR. Morbidity and Mortality Weekly Report, 2009, 57:1409-1413. PMID:19129744 84. Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407
62
Chapter 3 Prevention of spinal cord injury
85. Barboza Argüello ML, Umaña Solís LM. Impact of the fortification of food with folic acid on neural tube defects in Costa Rica. Revista Panamericana de Salud Pública, 2011, 30:1-6. PMID:22159644 86. De Wals P et al. Reduction in neural-tube defects after folic acid fortification in Canada. The New England Journal of Medicine, 2007, 357:135-142. doi: http://dx.doi.org/10.1056/NEJMoa067103 PMID:17625125 87. López-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. [– Chile]. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 88. López-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. [– Argentina]. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 89. Sayed AR et al. Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2008, 82:211-216. doi: http://dx.doi. org/10.1002/bdra.20442 PMID:18338391 90. Persad VL et al. Incidence of open neural tube defects in Nova Scotia after folic acid fortification. Canadian Medical Association Journal, 2002, 167:241-245. PMID:12186168 91. Flour Fortification Initiative. FFI Database. Atlanta, 2012 (http://www.sph.emory.edu/wheatflour/globalmap.php, accessed 28 may 2012). 92. Williams LJ et al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995–2002. Pediatrics, 2005, 116:580-586. doi: http://dx.doi.org/10.1542/peds.2005-0592 PMID:16140696 93. Berry RJ, Bailey L, Mulinare J, Bower C. Folic Acid Working Group. Fortification of flour with folic acid. Food and Nutrition Bulletin, 2010, 31:(1 Suppl)S22-35. Review. PubMed PMID: 20629350 PMID:20629350 94. Rofail D et al. Factors contributing to the success of folic acid public health campaigns. Journal of Public Health, 2012, 34:90-99. doi: http://dx.doi.org/10.1093/pubmed/fdr048 PMID:21727078 95. O’Connor P. Work related spinal cord injury, Australia 1986–1997. Injury Prevention, 2001, 7:29-34. doi: http://dx.doi. org/10.1136/ip.7.1.29 PMID:11289531 96. Correa GI et al. Work-related traumatic spinal cord lesions in Chile, a 20-year epidemiological analysis. Spinal Cord, 2011, 49:196-199. doi: http://dx.doi.org/10.1038/sc.2010.71 PMID:20548320 97. Sanmiquel L et al. Analysis of work related accidents in the Spanish mining sector from 1982−2006. Journal of Safety Research, 2010, 41:1-7. doi: http://dx.doi.org/10.1016/j.jsr.2009.09.008 PMID:20226944 98. Hodous TK, Layne LA. Injuries in the mining industry. Occupational Medicine, 1993, 8:171-184. PMID:8456346 99. Boden LI. Government regulation of occupational safety: underground coal mine accidents 1973−75. American Journal of Public Health, 1985, 75:497-501. doi: http://dx.doi.org/10.2105/AJPH.75.5.497 PMID:3985237 100. ILO. Social and labour issues in small-scale mines, Geneva, International Labour Organization, 1999, (http://www.ilo.org/ public/english/dialogue/sector/techmeet/tmssm99/tmssmr.htm, accessed 5 October 2012) 101. ILO. Accelerating action against child labour. Report of the Director-General, International Labour Conference, 99th session, 2010, Geneva, International Labour Organization (http://www.ilo.org/global/resources/WCMS_126752/lang--en/index. htm, accessed 5 October 2012). 102. Department of Mineral Resources. 2003–2011 Falls of ground. Pretoria, Republic of South Africa, Department of Mineral Resources, 2011 (http://www.dmr.gov.za/publications/summary/134-2003 — 2011/410-2003-2011falls-of-ground-accidentsgraph.html, accessed 15 March 2012). 103. ILO. Code of practice on safety and health in underground coalmines. Meeting of Experts on Safety and Health in Coal Mines, Geneva, 8−13 May 2006. Geneva, International Labour Organization, 2006. 104. ILO. Code of practice on safety and health in agriculture. Meeting of Experts to Adopt a Code of Practice on Safety and Health in Agriculture, Geneva, 25−29 October 2010. Geneva, International Labour Organization, 2010. 105. Stout NA, Linn HI. Occupational injury prevention research: progress and priorities. Injury Prevention, 2002, 8 Suppl 4:IV9IV14. doi: http://dx.doi.org/10.1136/ip.8.suppl_4.iv9 PMID:12460949 106. Litchfield MH. Agricultural work related injury and ill-health and the economic cost. Environmental Science and Pollution Research International, 1999, 6:175-182. doi: http://dx.doi.org/10.1007/BF02987623 PMID:19009396 107. Amorim EC et al. Spine trauma due to diving: main features and short-term neurological outcomes. Spinal Cord, 2011, 49:206-210. doi: http://dx.doi.org/10.1038/sc.2010.79 PMID:20625383 108. Vlok AJ et al. Shallow-water spinal injuries − devastating but preventable. South African Medical Journal, 2010, 100:682684. PMID:21081000
63
International Perspectives on Spinal Cord Injury
109. Ye C et al. Pattern of sports- and recreation-related spinal cord injuries in Beijing. Spinal Cord, 2009, 47:857-860. doi: http:// dx.doi.org/10.1038/sc.2009.49 PMID:19436265 110. Aito S, D’Andrea M, Werhagen L. Spinal cord injuries due to diving accidents. Spinal Cord, 2005, 43:109-116. doi: http:// dx.doi.org/10.1038/sj.sc.3101695 PMID:15558081 111. Barss P et al. Risk factors and prevention for spinal cord injury from diving in swimming pools and natural sites in Quebec, Canada: a 44-year study. Accident; Analysis and Prevention, 2008, 40:787-797. doi: http://dx.doi.org/10.1016/j.aap.2007.09.017 PMID:18329434 112. Korres DS et al. Diving injuries of the cervical spine in amateur divers. The Spine Journal, 2006, 6:44-49. doi: http://dx.doi. org/10.1016/j.spinee.2005.06.013 PMID:16413447 113. WHO. Guidelines for safe recreational water environments. Volume 2: Swimming pools and similar environments. Geneva, World Health Organization, 2006. 114. Cusimano MD, Mascarenhas AM, Manoranjan B. Spinal cord injuries due to diving: a framework and call for prevention. The Journal of Trauma, 2008, 65:1180-1185. doi: http://dx.doi.org/10.1097/TA.0b013e3181826e09 PMID:19001991 115. FINA. Facilities rules, No. 5: Diving Facilities. Lausanne, Fédération Internationale de Natation (International Swimming Federation), 2010 (http://www.fina.org/H2O/index.php?option=com_content&view=article&id=368:fr-5-divingfacilities&catid=88:facilities-rules&Itemid=184, accessed 14 March 2012). 116. Blitvich JD, McElroy GK, Blanksby BA. Risk reduction in diving spinal cord injury: teaching safe diving skills. Journal of Science and Medicine in Sport, 2000, 3:120-131. doi: http://dx.doi.org/10.1016/S1440-2440(00)80074-2 PMID:11104304 117. Blitvich JD et al. Retention of safe diving skills. Journal of Science and Medicine in Sport, 2003, 6:155-165. doi: http://dx.doi. org/10.1016/S1440-2440(03)80251-7 PMID:12945622 118. Blitvich JD et al. Long term retention of safe diving skills. Journal of Science and Medicine in Sport, 2003, 6:348-354. doi: http://dx.doi.org/10.1016/S1440-2440(03)80029-4 PMID:14609152 119. Knútsdóttir S et al. Epidemiology of traumatic spinal cord injuries in Iceland from 1975 to 2009. Spinal Cord, 2012, 50:123126. doi: http://dx.doi.org/10.1038/sc.2011.105 PMID:21946442 120. Furlan JC et al. Assessment of disability in patients with acute traumatic spinal cord injury: a systematic review of the literature. Journal of Neurotrauma, 2011, 28:1413-1430. doi: http://dx.doi.org/10.1089/neu.2009.1148 PMID:20367251 121. Boran S et al. A 10-year review of sports-related spinal injuries. Irish Journal of Medical Science, 2011, 180:859-863. doi: http://dx.doi.org/10.1007/s11845-011-0730-4 PMID:21792709 122. NZRU. RugbySmart. Wellington, New Zealand Rugby Union (http://www.nzrugby.co.nz/the_game/safety/rugbysmart, accessed 9 April 2012). 123. Quarrie KL et al. Effect of nationwide injury prevention programme on serious spinal injuries in New Zealand rugby union: ecological study. British Medical Journal, 2007, 334:1150. doi: http://dx.doi.org/10.1136/bmj.39185.605914.AE PMID:17513314 124. NZRU/ACC. RugbySmart DVD. New Zealand Rugby Union in conjunction with Accident Compensation Corporation, 2012. 125. BokSmart. Winners play smart rugby. Cape Town, The BokSmart National Rugby Safety Program, 2009 (http://www. sarugby.co.za/boksmart/, accessed 9 April 2012). 126. Ackery A et al. An international review of head and spinal cord injuries in alpine skiing and snowboarding. Injury Prevention, 2007, 13:368-375. doi: http://dx.doi.org/10.1136/ip.2007.017285 PMID:18056311 127. Hessler C et al. Spine injuries due to horse riding accidents – an analysis of 30 cases [article in German]Sportverletzung Sportschaden, 2011, 25:93-96. doi: http://dx.doi.org/10.1055/s-0029-1245831 PMID:21611912 128. Bhide VM, Edmonds V, Tator C. Prevention of spinal cord injuries caused by diving: evaluation of the distribution and usage of a diving safety video in high schools. Injury Prevention, 2000, 6:154-156. doi: http://dx.doi.org/10.1136/ip.6.2.154 PMID:10875676 129. WHO/UNICEF. World report on child injury prevention. Geneva, World Health Organization and United Nations Children’s Fund, 2008. 130. Louge P et al. Current management of diving-related spinal cord decompression sickness in 2010 [article in French]. La Presse Medicale, 2010, 39:778-785. doi: http://dx.doi.org/10.1016/j.lpm.2010.02.049 PMID:20466511 131. PAHO. Natural disasters – protecting the public’s health. Washington, DC, Pan American Health Organization, 2000. 132. PAHO. Earthquake in Haiti: PAHO/WHO situation report on health activities post earthquake. Pan American Health Organization, 2010 (http://reliefweb.int/sites/reliefweb.int/files/resources/Full_Report_3342.pdf, accessed 5 May 2012).
64
Chapter 4 Health care and rehabilitation needs
“At age 15 I was diagnosed with acute lymphoblastic leukaemia and other complications. Following my 16th birthday in hospital, I developed a rapidly progressive paraplegia with a sensory level at T6 together with a neurogenic bladder and bowel. The cause of the paraplegia remains unclear; however an adverse reaction to chemotherapy was the most likely explanation. After medical care at home and continuing complete marrow remission, I was well enough in July 1990 to commence rehabilitation at a spinal unit. Life in the spinal unit was difficult. As a younger, female patient I did not have support from peers of my age or gender to talk with. My strong desire to leave the unit was my inspiration to work hard and learn to live in a wheelchair. After three months I was able to return home and start living more independently.” (Anne, Australia) “In intensive care I awoke to find a man, a doctor – his face, adorned with beard, close to mine. In an almost threatening but absolute way he stated to me, ‘You do know that you’ll never walk again.’ I looked quizzically and with disbelief at him. He wanted me to reply that I did understand – but I was in shock and incredibly naïve about spinal injury. I absolutely didn’t know what it meant and, even if I did, I still wouldn’t believe that they could tell me then what the prognosis was because I couldn’t take it on. It was too early to hear such a life sentence…” (Joanna, New Zealand) “Everybody is encouraged to exercise daily, so why would a spinal cord injury make us any different to everybody else? I find that actively trying to exercise helps me prevent many potential complications that may affect me and maintains my body and mind for today and into the future. Getting out in the paddocks or on the beach with my wife and our kids in my chin-control wheelchair is my favourite exercise.” (Brad, Australia) “I received therapy daily, which was a big relief. I loved the nurses, especially the one who taught me bladder and bowel care (remember until now I still had an indwelling catheter). I had to be put on a very high bed to reduce the electric shocks every time someone came near or touched my bed. Slowly I learned techniques to help me bathe, transfer, and wheel. Barriers between the residents of the spinal unit were quickly eliminated as the trousers of those who dared to stand would fall to their ankles and we would laugh until there was no longer anything to laugh about.” (Angela, Uganda) “I got the bladder calculi after discharging from the hospital 2 years ago, and then I was admitted to the hospital for surgery. The pressure ulcer always appeared in my hips each time there was a delay in turning over. Now I pay enough attention to the prevention of pressures sores and urinary system infection under the guidance of rehab teachers. I will try to keep good health, but I can’t promise it.” (Chen, China)
4
Health care and rehabilitation needs Whether traumatic or non-traumatic in origin, spinal cord injury (SCI) is a very significant health condition. While SCI will always be life-changing, it does not have to undermine the possibilities of a good and fulfilling life for individuals. The social impact of SCI does not necessarily depend on the severity or level of the injury, but on social and environmental factors, particularly the availability of appropriate and accessible health care. With the right treatment, SCI does not have to be a terminal condition, nor does it need to prevent anyone from having an education, finding employment, having a family, and having a successful and productive life. While subsequent chapters explore other social barriers and facilitators, this chapter focuses on health care and rehabilitation including assistive technologies. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) establishes the human right of people with disabilities to the highest attainable standard of health in Article 25, the provision of rehabilitation (including assistive technologies) in Article 26, and personal mobility (including assistive technologies) in Article 20 (1). This chapter analyses the impact that SCI can have on an individual’s health, the complications that they can experience and how these can be managed across three key phases of health care provision, namely: ■ pre-hospital and acute care – the need to ensure immediate survival and stabilization. Without the right initial response, SCI can be life-threatening and can undermine the possibility of future function and independence. ■ post-acute medical care and rehabilitation services – to ensure that functioning is maximized and that the individual can be as independent as possible so as to return to education or resume employment. Appropriate assistive devices are a vital part of this. Without access to rehabilitation and assistive devices, the person with SCI has little hope of participating in society. ■ maintenance of health care – so that the individual can avoid or survive the complications of SCI, such as urinary tract infections, pressure ulcers and overuse injuries, remain healthy and enjoy a long life. Without access to basic health care, a person with SCI is more likely to die prematurely. Constraints of space mean that this chapter cannot address all the health care needs of people with SCI. The goal is to inform policy-makers and service 67
International Perspectives on Spinal Cord Injury
managers of the potential complications of SCI and the main services that are required across the three phases of care.
Understanding the health impact of spinal cord injury The neurological damage caused by both traumatic and non-traumatic SCI prevents sensory and motor information from travelling to and from the brain below the level of the injury. The impact of SCI on function will depend on the level and severity of injury and the available health care. The International Standards for Neurological Classification of Spinal Cord Injury are often used in health-care settings to describe the extent of injury (including type and level of injury) on the basis of a systematic sensory and motor examination of neurological function (2). SCI can be divided into two types of injury on the basis of severity (2), namely: ■ Complete injury − people who experience a complete injury have no sensory or motor function below the level of the SCI and specifically at S4–S5. ■ Incomplete injury – people who experience an incomplete injury retain some function (i.e. sensory and muscular) below the neurological level of injury, including at the lowest sacral segments S4–S5. There are different types of incomplete SCI, such as anterior, central and posterior cord syndrome, and Brown-Sequard syndrome, which can influence residual function. The level at which the spinal cord is damaged determines which parts of the body may be affected by paralysis, i.e. loss of muscle function and sensation (2): ■ Paraplegia – refers to an injury to the thoracic (T2−T12), lumbar (L1−L5) or sacral (S1−S5) segments of the spinal cord, which includes the conus medullaris (distal bulbous part of the spinal cord) or to the cauda 68
equina (collection of nerve roots which fan out from the spinal cord at L1−L2). It results in a loss of varying degrees of control of the lower limbs and trunk without involvement of the upper limbs. For example, people with complete injuries between T2 and T8 will have poor trunk control, due to a lack of abdominal muscle control, and total loss of function in the lower limbs; people with complete lower level injuries between T9 and T12 will have good trunk and abdominal control and total loss of function in the lower limbs; while people with lumbar and sacral injuries will have some control over their lower limbs. Figure 1.1 in Chapter 1 shows the location of the different segments of the spinal cord. ■ Tetraplegia – is used to describe an injury to the cervical segments of the spinal cord, i.e. between C1 and T1. Depending on the severity and level of injury, tetraplegia results in varying degrees of functional loss in the neck, trunk, and upper and lower limbs. For example, people with complete C1−C3 injuries will require the assistance of a ventilator to breathe; people with complete C5 injuries will have shoulder/upper arm control but no wrist/hand control; people with complete C6 injuries will have wrist extension but no hand/finger function; and people with complete C7−C8 injuries will be able to control their upper limbs but will experience problems with hand/finger dexterity. In addition to the motor-sensory loss, SCI affects the autonomic neurologic function of the body, resulting in multiple impairments such as loss of bowel, bladder and sexual functions (3). People with SCI also experience a range of activity limitations and participation restrictions in areas such as mobility (e.g. changing body position, transferring, walking), self-care activities (e.g. bathing, dressing, toileting, eating), domestic activities (e.g. cleaning, cooking, caring for others), education, employment, maintenance of
Chapter 4 Health care and rehabilitation needs
social relationships, and participation in leisure activities (4).
Potential complications People with SCI are at risk of a range of secondary conditions, which can be a major cause of morbidity and mortality. While some of these complications occur primarily within the prehospital and acute care phase after injury, others may appear at any stage. There is evidence that, with appropriate management, many of these secondary conditions are preventable. Autonomic dysreflexia: This condition is characterized by a sudden increase in blood pressure and commonly occurs in people with SCI at or above the T6 level (5). Other signs and symptoms include severe headache, heavy sweating, flushed or reddened skin, blurred vision, body hair “standing on end,” and cardiac arrhythmias (5 –7). Triggers can include any noxious stimulus, most commonly a distended or blocked bladder or bowel. Autonomic dysreflexia is a medical emergency that, if left untreated, may result in serious consequences such as stroke, seizures and death. Education on prevention and management strategies is essential for all people with tetraplegia or high-level paraplegia as well as for their family members and caregivers (6). Deep vein thrombosis (DVT): People with SCI are at a high risk of DVT, particularly during the acute and post-acute phases of injury when changes in the normal neurological control of the blood vessels and immobility can result in stasis (8). Additional risk factors include age, obesity, the presence of lower limb fractures, pregnancy and a previous history of DVT. Signs and symptoms include pain, swelling, tenderness, skin discoloration and warmth of the affected limb (8). DVT can lead to pulmonary embolism and potentially to death, and therefore require rapid treatment with anticoagulant medication (8). Preventive measures such as anticoagulant med-
Circulatory system
ication or the wearing of compression stockings are extremely important and should be a part of general hospital policy (8, 9). Hypotension: Orthostatic hypotension is a significant drop in blood pressure when a person moves from a lying to upright position. It affects people with both paraplegia and tetraplegia and is common during the acute phase of injury, although some symptoms may continue to occur later (10, 11). Symptoms typically include fatigue, light-headedness, dizziness, blurred vision, muscle weakness, and even temporary loss of consciousness (12). Management involves close monitoring, gradual changes in posture and, where appropriate, provision of medication and salt tablets (13). Urinary tract infections (UTIs): UTIs are common among people with SCI and have been cited as a major reason for re-hospitalization in high-income countries and premature mortality in developing countries (6, 14 –16). SCI has an impact on bladder function, and many people use catheterization as a means of management (see below). There is some evidence that the type of bladder management method and also the types of catheters used may have an impact on the risk of UTIs (14, 16). Other factors associated with an increased risk of UTIs including fluid intake, personal hygiene, pregnancy, social support systems and access to health-care services (17). Noticeable signs and symptoms of UTIs include episodes of urinary incontinence, pain during urination, cloudy urine with increased odour, fever, malaise or lethargy, as well as an exacerbation of other SCI-related complications such as increased spasticity, neuropathic pain and autonomic dysreflexia (6, 15, 16). Laboratory investigations (analysis of urine cultures) are used to confirm the presence of UTIs and to determine the best course of treatment (6, 15, 16). Prevention of UTIs is a major goal of bladder management. Education on proper catheterization techniques and care is essential. Other 69
Genitourinary system
International Perspectives on Spinal Cord Injury
management approaches include routine followup, adequate fluid intake, good standards of personal hygiene, and proper care of medical devices associated with bladder management (6, 15). Spasticity/spasms: Spasticity is a common secondary condition for people with SCI (13, 18). It can lead to involuntary movements and the development of contractures in joints, which restrict their range of motion and thereby hinder functioning. Management measures include: passive movement or stretching, which can be applied manually by therapists, self-administered or achieved through positioning, splinting and/or serial casting; active movement and exercise; electrical, mechanical or thermal techniques to stimulate the muscles or nerves; and antispasmodic medications (18–20). Sublesional osteoporosis: Following SCI there is an immediate loss of bone mass, thus increasing the risk of osteoporosis below the level of injury (21). Inadequate calcium in a person’s diet, insufficient vitamin D, ageing and inactivity may also contribute to changes in bone density (21). If osteoporosis is present, people with SCI are at a higher risk of bone fractures, which may be sustained easily during everyday activities such as transfers. Given the immediate loss of bone mass following SCI, early management of bone health is particularly important. Examples of interventions are: biophosphonates (medications to prevent or treat decline in bone mass), together with vitamin D and/or calcium; weight-bearing activities; and electrical stimulation. However, evidence regarding their effectiveness is limited (21–25). Heterotopic ossification: Heterotopic ossification is a condition that results in abnormal bone formation in the soft tissues around affected joints below the level of SCI. Commonly affected joints include the hips, knees and, in cervical injuries, the shoulders and elbows (13). Heterotopic ossification restricts the range of movement in joints and therefore can have a significant impact 70
Neuromusculoskeletal system
on functional outcomes for people with SCI. Early detection through bone scans or X-rays is important. As the cause of heterotopic ossification is unclear, its management can be challenging. The limited evidence available suggests that early provision of anti-inflammatory medication can be effective in reducing the risk of developing heterotopic ossification. Treatment such as medication and radiotherapy may help to stop the progression of heterotopic ossification, and surgery may be useful in improving the range of motion of affected joints (26).
Respiratory system
Respiratory function: Lung capacity, ease of breathing and the ability to cough and clear secretions are often compromised following SCI as a result of paralysis of muscles associated with breathing (27, 28). People who experience highlevel tetraplegia are particularly vulnerable. People with an SCI at and above C3 may require constant mechanical ventilation or implantation of a phrenic or diaphragm pacemaker to maintain adequate breathing (29–31). Some people may have a tracheostomy inserted during the acute stage of care to maintain an adequate airway and to facilitate secretion clearance and ventilation (13). Respiratory complications: Pneumonia, atelectasis (“collapsed lung”), aspiration and respiratory failure remain major causes of morbidity and mortality in people with SCI. However, with good management, such complications are preventable. Measures include annual influenza vaccination, five-yearly pneumococcal vaccination, prompt treatment of upper respiratory tract infections with antibiotics, and early implementation of assisted coughing for people with high-level SCI. Longer-term management requires: regular assessment and review of respiratory and lung function; short- or long-term mechanical ventilation aids; respiratory muscle training; aerobic exercise; psychological support to develop coping skills, particularly for those dependent on a ventilator; and education for
Chapter 4 Health care and rehabilitation needs
people with SCI and their family members (29). In some situations a pacemaker can be surgically implanted to help stimulate some of the key respiratory nerves and muscles (e.g. diaphragm) and allow ventilator-free breathing (29, 32).
Pain
Most people with SCI experience chronic pain, which can have a significant impact on their quality of life (13, 33 –35). The International Spinal Cord Injury Pain Classification has recently been developed to assist clinicians and researchers to classify pain following SCI (36, 37). A significant proportion of people with SCI experience neuropathic pain as a result of damage to the spinal cord, usually characterized as burning, stabbing, aching, and/or electric-like stinging sensations (13, 33, 38). People with SCI may also experience musculoskeletal pain as a result of overuse, e.g. shoulder pain from constantly pushing a manual wheelchair, muscle spasms, mechanical instability or poor posture (39). Experiences of pain are different for each individual and therefore consideration needs Box 4.1. Definitions
to be given to biomedical, cultural and psychosocial factors (35, 40 –42). Multidisciplinary approaches are required for pain management programmes, which may involve measures such as medication, exercise, massage, acupuncture, psychotherapy, meditation and relaxation, provision of assistive technology (see Box 4.1 for definition), review and modification of seating systems, and education about alternative methods of carrying out activities such as transferring (13, 33, 34, 38).
Skin
Pressure ulcers: People with SCI are at high risk of developing pressure ulcers as a result of impairments in sensation and mobility. The presence of other behavioural, socio-demographic and medical factors − smoking, nutritional deficiencies (malnutrition, being underweight, anaemia), infection, moisture from sweating or incontinence, or co-morbid conditions such as diabetes and pulmonary disease − can increase the risk of pressure ulcers (46 –48). Pressure ulcers may occur at any time and can have a significant
Assistive technology : Assistive technology can be defined as “any piece of equipment, or product, whether it is acquired commercially, modified, or customized, that is used to increase, maintain, or improve the functional capabilities of individuals with disabilities” (43). Environmental modifications: The accessibility of the physical environment has an impact both on the functional performance of people with disabilities and on their ability to use certain types of assistive devices. Environmental modifications, whether focused on the individual level (such as installing a grab rail to assist someone to transfer on or off the toilet, or adapting the width of a door to accommodate a wheelchair) or on the societal level (such as ramps and elevators in public buildings), can help individuals to overcome barriers in their home, school and work environments. Universal design and mainstream technology : Universal design is defined in the CRPD as “the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design…” (1). While the focus of this section is on products that are specifically designed for use by people with SCI, it is important to be aware that there are many technologies available on the market with universal design features that may also be useful (e.g. mobile telephones, computers and kitchen appliances). See Chapter 7 for further details. Appropriate technology : This term is used to describe technology that is appropriate for the needs of the user in his or her environment (44, 45 ). It includes technology that is acceptable to its users, provides proper fit and where appropriate postural support, is safe and durable, is available in the country, and can be obtained and maintained at an affordable cost (45 ).
71
International Perspectives on Spinal Cord Injury
impact on an individual’s health, functioning and quality of life (46), as well as placing a significant strain on the health-care system due to increased rates of hospitalization and longer lengths of stay (49). Preventing the development of pressure ulcers is one of the most important aspects of health care for people with SCI and is more cost-effective than treatment (47). As a result, individuals with SCI and their family members require education and training on management techniques as part of their life long care (47, 50). Prevention includes simple measures such as regular skin checks, pressure-relieving methods, adequate bowel and bladder care, provision of appropriate assistive devices, and good nutrition (46 –48, 51). Treatment measures may include appropriate wound care, pressure-relieving measures, antibiotics for infections, and surgery (46 –48, 50).
Health care needs Pre-hospital and acute care Care provided during the first 24 hours and the first few days following a traumatic SCI is critical and can significantly influence outcomes for an injured person (51). Pre-hospital management requires: a rapid evaluation, including measurement of vital signs and level of consciousness; initiation of injury management, including stabilization of vital functions, immobilization of the spine to preserve neurological function until long-term spinal stability can be established, and control of bleeding, body temperature and pain; and prompt and safe access to the health-care system (48, 51–55). People with SCI should ideally arrive at an acute care setting within two hours of injury (54). Interventions in the acute phase, in addition to the techniques applicable in all major injuries (e.g. infusion, bladder drainage, monitoring of vital signs) focus on: prioritizing and 72
treating life-threatening injuries to maximize survival; treating potentially disabling injuries so as to minimize impairment; and minimizing pain and psychological suffering (54). Accurate diagnosis of the SCI and any co-occurring conditions (e.g. traumatic brain injury, limb fractures, chest or abdominal injuries, wounds and penetrating injuries) is essential so that appropriate medical care and rehabilitation can be provided. Assessment should commence immediately on arrival at hospital and include: a medical history; signs and symptoms, e.g. weakness, sensory and motor deficits, bowel and bladder dysfunction, anatomical deformity, localized tenderness; a neurological (motor and sensory) examination; radiological imaging, i.e. X-ray, computerized tomography, and/or magnetic resonance imaging; and laboratory testing, e.g. blood, microbiology. Conservative and/or surgical interventions are required if the spine is unstable or there is ongoing compression of the spinal cord. For both traumatic and non-traumatic SCI, there are benefits and complications to both conservative treatment and surgery. Many factors should be taken into consideration to determine the most appropriate management approach, including level of injury, type of fracture, degree of instability, presence of neural compression, impact of other injuries, surgical timing, availability of resources such as expertise, and benefits and risks. In all cases people with SCI should be given an informed choice between conservative and surgical management. Conservative management involves measures to immobilize the spine and to “reduce” a dislocation with, for instance, bed rest, traction of the spine or the wearing of orthoses (e.g. a halo vest) to immobilize the spine, which usually takes place over a period of six weeks or more. Surgical management can be used to (i) decompress the spine by the “reduction” of a dislocation and/or by removal of fracture fragments that are causing compression of neural structures, and (ii) stabilize the spinal column by implantation of
Chapter 4 Health care and rehabilitation needs
hardware and the use of bone grafts. Recent evidence from one prospective, multicentre study in North America of 313 patients with injuries between C2 and T1 has indicated that early surgical decompression, i.e. in the first 24 hours following SCI, can improve neurological outcomes (56). Both conservative and surgical management have potential benefits and complications and there is limited research and agreement on which approach promotes better neurological outcomes, has fewer complications, enables earlier mobilization and rehabilitation, and is more cost-effective (13, 51, 57– 61). Acute care for non-traumatic SCI is similar to that for traumatic SCI, with some variation according to the cause. Surgery may be considered for: degenerative conditions, if there is a significant impact on the spinal canal (62, 63); spinal tumours, often followed by radiotherapy or chemotherapy (64); and spinal vascular conditions, with the exception of infarction (65, 66). Non-traumatic SCI caused by infectious conditions may also require surgery, but typically needs immediate treatment with medication such as antibiotics, antivirals or antiparasitics (67).
recovery of bladder and bowel function is important to both groups (68–71). The following section explores what works in improving body and mental functions.
Management of bladder function
Post-acute medical care and rehabilitation Appropriate medical care and rehabilitation can prevent complications associated with SCI and can assist the person towards a fulfilling and productive life. Rehabilitation, defined as a “set of measures that assist individuals to achieve and obtain optimal functioning in interaction with their environments” (44), should commence in the acute phase for people with SCI, continue to be available to promote functioning, and be available in a range of different settings from the hospital through to the home and community environments. Regaining functioning is a high priority for people with SCI. Studies indicate that regaining upper limb function is a high priority for people with tetraplegia and regaining sexual function is a high priority for people with paraplegia, while
Loss of normal bladder function is one of the most significant consequences for people who have sustained an SCI. Poor management of bladder function can result in secondary complications such as UTIs, urinary retention, incontinence, stones in the kidneys and urinary tract, and reflux of urine (15). When any of these problems occurs over a protracted period of time, life-threatening conditions such as renal failure may develop (13, 16). Methods used to assist people with SCI to empty their bladders include (15, 16): ■ Intermittent catheterization – involves inserting a catheter into the bladder to drain the urine and then immediately removing it on completion. This is done regularly throughout the day, and either “sterile” (i.e. single-use) or “clean” (i.e. sanitization and storage of the catheter for multiple use) systems can be used. ■ In-dwelling catheterization – involves inserting a catheter into the bladder and leaving it there on a short-term or long-term basis. The two main types of in-dwelling catheters are 1) the urethral catheter and 2) the suprapubic catheter, which involves inserting the catheter through a small surgical incision above the pubic bone. ■ Other methods – include manual methods to trigger voiding or condom catheterization, which involves an external condomtype catheter attached to a drainage bag (for males only); medication; electrical stimulation; and surgery to create a urinary diversion or abdominal stoma for catheterization. Each individual requires a customized bladder management programme that takes into consideration factors such as sex, bladder function, mobility, sitting balance, hand function and lifestyle. Consideration should also be given 73
International Perspectives on Spinal Cord Injury
to the advantages and disadvantages associated with each method of bladder control and their appropriateness and availability in the individual’s context. Manual methods are generally discouraged and using them as the only means for bladder emptying in the long-term is not considered best practice (16, 72). Evidence suggests that intermittent catheterization is a preferable option as it is generally associated with fewer complications, particularly compared to in-dwelling catheterization (16). A randomized controlled trial carried out in the USA demonstrated that a brief education programme (consisting of an experienced nurse observing catheterization techniques, medical counselling on how to improve bladder management and when to access health care, provision of written information on management of UTIs and one follow-up call to discuss questions that arose after the educational session) brought about a reduction in reporting of symptoms, antibiotic treatment episodes and the number of UTIs (14). Research has also shown that clean intermittent catheterization (CIC) can be a safe, efficient and cost-effective method to use in low-resource settings (72–74). Neurogenic bowel is a common condition following SCI and is associated with a large number of gastrointestinal problems, including poor colonic motility, prolonged bowel transit time, chronic constipation, abdominal distension and faecal incontinence (75 –77). People with SCI who experience a neurogenic bowel are often afraid of possible bowel incontinence, which can have a major impact upon an individual’s ability to return to former social roles and activities (75, 76). Adequate management of bowel function can be particularly difficult where resources are limited. For example, a study carried out in Pakistan following the 2005 earthquake found that limited access to appropriate health care, medical devices and toilet facilities had an impact on the ability of individuals to maintain proper bowel care (78). 74
As with bladder management, a bowel management programme must be developed for each person. A comprehensive assessment, development of an individualized bowel programme, monitoring and education are important aspects of the process (76). Establishing an effective bowel programme may involve measures such as: ■ ensuring adequate and appropriate nutritional and fluid intake; ■ use of dietary supplements and oral medications when necessary; ■ selecting appropriate methods to assist defecation and evacuation, such as physical techniques (i.e. manual evacuation, digital stimulation of the rectum and anal canal and positioning) and stimulants such as suppositories, enemas or laxatives; ■ surgery to form a stoma to manage bowel emptying; and ■ strategies to manage complications (75, 77, 79 –81).
Management of bowel function
SCI and its associated impairments can affect the physiological, practical and psychological aspects of sexual function − arousal, response, sexual expression and fertility. Both men and women may experience a decrease in or loss of sensation, difficulties in achieving orgasm, difficulties in moving and positioning themselves, and lowered self-esteem and confidence (82–84). In addition, men may experience complete or partial impairment of penile erection and ejaculation, which has implications for fertility (85). For women, menstruation may be disrupted following injury, though it usually returns to normal within a few months (86). Changes in sexual function can have a major impact on quality of life for people with SCI (69, 82). These psychological and social aspects of sexuality are discussed in Chapter 6. Resuming sexual activity is an important priority for people with SCI. A web-based study carried out to determine the impact of SCI on
Management of sexual function and reproductive health
Chapter 4 Health care and rehabilitation needs
sexual function reported that the main reasons people wanted to pursue sexual activity were intimacy, sexual need, self-esteem and keeping a partner (69). Sexuality is often overlooked in the context of rehabilitation as health professionals may feel uncomfortable addressing this issue and may lack the necessary knowledge and skills (82). Management of sexual function requires respectful discussion at the appropriate time with the involvement of both the individual and his or her partner. Medical care and rehabilitation measures need to be relevant to the individual and should consider age, gender, physical, psychosocial, and cultural factors (82, 83). These measures include: (i) the provision of education and information on preparation and positioning for sexual activity, birth control, prevention of sexually transmitted infections, and management strategies should issues such as incontinence or autonomic dysreflexia arise; (ii) provision of assistive devices for arousal or to enhance positioning; treatment of erectile dysfunction in men (e.g. vibratory stimulation, oral medications, penile injections, vacuum devices and, as a last resort, surgical options such as
penile implants); and (iii) assisted fertility if required (13, 82, 83). When women with SCI become pregnant, consideration needs to be given to the potential impact of medications for SCI on the fetus, the increased risk of complications (such as UTIs, pressure ulcers, deep vein thrombosis and respiratory problems) associated with pregnancy, functional changes associated with weight gain (e.g. difficulties transferring towards the end of pregnancy), and complications during labour, including autonomic dysreflexia (86).
Management of difficulties in functioning
SCI results in limitations in many activities. Rehabilitation should aim to assist people to overcome those limitations by: improving trunk and limb function; modifying the person’s immediate environment; and providing assistive devices and other reasonable accommodations to enable individuals to continue family and work roles. Although there is variation between individuals, Table 4.1 provides a broad summary of the functional outcomes (mobility, self-care and domestic activities) desirable for different levels of complete SCI.
Table 4.1. Projected functional outcomes for motor complete tetraplegia at 1 year post-injury and for people with complete paraplegia Projected functional outcomes for complete tetraplegia Measure Feeding C1–4 Dependent C5 Independent with assistive technologies Requires assistance to independent with assistive technologies Requires assistance Dependent C6 Independent with or without assistive technologies Requires assistance to independent with assistive technologies Independent Requires assistance C7 Independent C8 – T1 Independent
Grooming
Dependent
Independent with assistive technologies
Independent
Upper extremity dressing Lower extremity dressing
Dependent Dependent
Independent Requires assistance to independent with adaptive equipment
Independent Usually independent
continues … 75
International Perspectives on Spinal Cord Injury
… continued Projected functional outcomes for complete tetraplegia Measure Bathing C1–4 Dependent C5 Dependent C6 Requires assistance to independent with assistive technologies Requires assistance Independent C7 Requires assistance to independent with assistive technologies Requires assistance to independent Independent C8 – T1 Independent with assistive technologies
Bed mobility Weight shifts
Dependent Independent in power chair with power tilt or recline mechanism Dependent
Requires assistance Requires assistance unless in power chair with tilt or recline features Requires assistance
Independent Independent
Transfers
Wheelchair propulsion
Independent with power chair; dependent in manual wheelchair
Driving
Dependent
Independent with power chair; independent to some extent in manual wheelchair with adaptations on level surfaces Independent with adaptations T2–9
Requires assistance to independent on level surfaces Independent with manual wheelchair on level surfaces
Independent with or without transfer board for level surfaces Independent in manual wheelchair, except for curbs and uneven terrain
Independent
Independent
Independent with adaptations T10–L2 Independent
Independent with adaptations
Independent with adaptations L3–S5
Projected functional outcomes for complete paraplegia Activities of daily living (grooming, feeding, dressing, bathing) Bowel and bladder Transfers Walking Independent Independent
Independent Independent For exercise only and using orthotics and crutches/ walking frame
Independent Independent In the house with orthotics; outdoors with orthotics and crutches
Independent Independent Independent yet may require orthotics and crutches/cane
Terms: Dependent – the person with SCI requires another individual to carry out the task. Requires assistance – the person with SCI can carry out the activity when assisted by another individual. The level of assistance can be minimal, moderate to high. Independent – the person with SCI can carry out the task with or without assistive technologies and without any form of personal assistance. Source: Adapted from (87 ) with permission from Wolters Kluwer and Lippincott Williams & Wilkins.
76
Chapter 4 Health care and rehabilitation needs
A wide range of rehabilitation measures can be used to enhance function or compensate for loss of function; some of these are described in the following section. Exercise to improve, restore or maintain function: Exercise is a key rehabilitation measure for improving muscle strength and function in the upper limb and may include interventions such as massed practice (highly repetitive movement) and electrical stimulation (19, 88–90). Interventions used for the lower limb include: passive and active exercises for stretching, range of motion and strengthening; electrical stimulation of muscles; and various gait retraining strategies in conjunction with the use of assistive technology such as orthoses, crutches, walking frames and parallel bars (13, 19, 91, 92). Exercise is important for people with SCI as it is associated with several psychological and physiological benefits, including improved muscle strength and endurance, reduced spasticity, improved joint range of motion, reduced pain and improved cardiovascular fitness (93–95). Teaching new strategies and techniques: Rehabilitation provides support and guidance for people to learn and master new and alternative ways of carrying out activities. A wide range of alternative strategies and techniques can be used by people with SCI to overcome activity limitations, including: learning new dressing techniques that utilize residual muscle function; wearing clothes that allow greater ease of dressing; learning to eat with different utensils to enable independence; modifying routines, e.g. personal care routines, to maximize efficiency and conserve energy; and re-allocating tasks to others where appropriate. Successful rehabilitation ensures that individuals are able to generalize their learning across a range of different environments. Therefore opportunities to practise new strategies and techniques outside the therapy environment, e.g. in the home and community, are essential. Provision of assistive technology (including modifications to the individual’s immediate environment): Assistive technology is an important
element of rehabilitation, and is essential for people with SCI, as it can enable them to perform everyday activities such as eating, dressing and moving around at a higher level of independence than would otherwise be possible. Environmental modifications similarly remove barriers to functioning and should be considered before discharge, as discussed below and in Chapter 7. Users and caregivers require training in the proper care and use of assistive technology; for instance, wheelchair users who received training have been shown to be more likely to report better functional outcomes and satisfaction (96). The provision of appropriate assistive technology empowers individuals with SCI and can lead to significant gains in their independence and participation in all areas of life, e.g. education, employment and recreation. Consideration of surgical interventions: When no further neurological or functional improvement is expected in the upper limb, reconstruction may be an option, although it is not relevant to all people with SCI and for many people it is not available (97). Surgery can involve transfer of one or several muscles or tendons to improve elbow or wrist extension, hand grasp or finger grip (13). Surgery is followed by a period of immobilization and targeted exercise. For many people with cervical SCI, surgery has led to improved upper limb movement and functioning; however, individual circumstances need to be considered, as do the benefits and disadvantages of surgery and the availability of appropriate rehabilitation (89, 98, 99).
Management of mental health issues
During the post-injury period, individuals and their family members will often experience grief and a range of emotions including denial, sadness, fear, frustration or anger as they begin the process of adjustment, as discussed further in Chapter 6. Personal factors − including gender, age, personality, coping style − and premorbid mental health conditions (e.g. depression, anxiety, alcohol or substance abuse) and associated 77
International Perspectives on Spinal Cord Injury
conditions such as post-traumatic stress disorder (PTSD) will influence how well an individual adjusts to the injury. Environmental factors − including cultural beliefs and values, attitudes, social supports, provision of appropriate assistive technology, and socioeconomic status − also have an influence on adjustment (13, 48, 100 –104). Depression is a common mental health condition to which people with SCI are particularly vulnerable in the post-injury phase. A recent review has estimated that 20–30% of people with SCI show clinically significant symptoms of depression (105). Depression can have far-reaching consequences for both individuals and their family members, and also for health systems. Depression is associated with fewer improvements in functioning, increased health complications such as pressure ulcers and UTIs, high rates of suicide, increased rates of hospitalization, and higher medical expenses (101, 104, 106). Mental health conditions such as depression are often regarded as a natural consequence of SCI and are therefore inadequately addressed (101). Management of the adjustment process requires early screening and assessment, timely provision of management measures such as education, information regarding available support services and resources, counselling and potentially medication, and sustained monitoring in the longterm (13, 48, 104, 106, 107). Peer mentoring and support is becoming an important component of rehabilitation programmes for people with SCI, and there is evidence that it contributes to improved adjustment and functioning (108–111).
Assistive technology The term “assistive technology” and other terms relating to it are defined in Box 4.1.
associated impairments, environmental factors (e.g. the physical environment, support, relationships) and personal factors (e.g. age, fitness, lifestyle) and any co-morbid health conditions. Wheelchairs, environmental control systems and computer technology appear to be the most widely used assistive technologies (112). Wheelchairs are one of the most important types of mobility device used by people with SCI (113, 114). For example a Danish study found that only 3.4% of a sample of 236 individuals followed up for 10–45 years since traumatic SCI reported that they did not require a mobility device, while 83.5% used manual and 27% used powered wheelchairs (115). Similarly, in an Australian study many people with SCI reported that mobility equipment was an important or very important area of need (116). A study in the USA showed that devices for mobility and independent living were the most common devices owned by participants with SCI, with a smaller proportion using computer technology, prosthetics, orthotics, and augmentative and alternative communication devices (117). People with a high level of SCI, i.e. tetraplegia, own significantly more assistive devices than people with paraplegia (117). Assistive technology needs may change during transition phases, as when an individual returns to community living or work, begins school, has a change in living situation or health status, or experiences gains or losses in function (118). As individuals with SCI age, they experience a decline in functional independence, which may necessitate changes to assistive technology, e.g. they may need a powered wheelchair instead of a manual one (119).
Types of assistive technology
Need for assistive technology
The need for assistive technology usually begins at the onset of an SCI and continues throughout the person’s life. The type of assistive technology required is influenced by the level of the SCI and 78
Table 4.2 provides a comprehensive overview of the assistive technologies relevant to people with SCI. Assistive technologies are often grouped according to functional need and therefore include mobility devices, communication devices, aids for self-care, aids for domestic activities and environmental control systems.
Chapter 4 Health care and rehabilitation needs
Table 4.2. Types of assistive technologies for people with spinal cord injuries Activity areas Mobility This area includes all those activities related to movement and travel, such as changing and maintaining body position, transferring, walking and moving, carrying and handling objects, hand and arm use, and using transportation. Examples Spinal orthoses: the type required is dependent on the level and severity of SCI and includes cervical collars, sternal occipital mandibular immobilizers and thoraco-lumbar-sacral orthoses. Purpose/Benefit Spinal orthoses are used in the acute phase after injury to stabilize the spinal column, allow for healing of bones or soft tissue, prevent further injury, and reduce pain (120). In the recovery phase they are designed to prevent deformity, improve posture and limit movement. Lower limb orthoses can provide fixed positioning of the limb to control spasticity and prevent deformity. They also compensate for muscle weakness or joint instability and provide support for people who have adequate lower limb strength to ambulate (121). Walking aids provide extra stability during ambulation to compensate for muscle weakness, poor coordination and reduced balance. Wheelchairs are used when lower limb strength is insufficient to allow walking and can be adapted to suit a vast range of movement abilities (122). For example, manual wheelchairs may be controlled using the upper limbs while powered wheelchairs can be controlled by using very small movements of the fingers on a control stick, or even by using head control (123) for those with inadequate hand movement. Transfer aids enable caregivers to assist people with SCI to change their body position and to move from one place to another, minimizing the risk of injury for both parties. Seating and positioning systems aim to facilitate optimal function in daily activities, prevent contractures and deformities by maintaining joint mobility and muscle length, and prevent skin breakdown and pressure ulcers (46, 48, 124). Static (fixed) splints provide hand positioning to prevent contractures and deformity. Dynamic (moveable) splints support weak or paralysed muscles, thus increasing hand and upper limb function. For example, a wrist-driven wrist-hand orthotic (or flexor hinge splint) allows someone with weak fingers to grasp using wrist strength. It has been found to improve hand function significantly for people with C5, C6 or C7 injuries (125). A mobile arm support can be fixed to a table or wheelchair to support a person’s arm against gravity while allowing the arm to move horizontally. It allows them to perform tasks such as feeding, hygiene and writing (126).
Lower limb orthoses: include braces/splints to support the hip, knee, ankle and foot. The most common example is the ankle-foot orthosis (AFO).
Other walking aids: include crutches, canes and walkers. Wheelchairs: include manual (self- or attendant-propelled, three- or four-wheeled) and powered wheelchairs (head-, chin- or handcontrolled), hand-powered tricycles, and scooters.
Transfer aids: slide sheets, transfer boards, and hoists.
Seating and positioning systems: include adapted forms of seating; cushions for pressure relief and comfort; supports for the head, thorax, pelvis, hips and legs; standing tables; and positioning belts. Upper limb orthoses: splints to support the shoulder, elbow, wrist, and/or hand. Examples include resting splints, tenodesis splints (support the wrist and allow for functional grasp), short hand splints and functional use splints (feeding, writing, typing splints).
continues … 79
International Perspectives on Spinal Cord Injury
… continued Activity areas Examples Driving and transportation: include vans with ramps or lift systems to accommodate wheelchairs; customized hand controls on motor vehicles for accelerating, braking and turning; and accessories such as car door openers, handles and swivel seats to assist with transfers. Communication This area includes all those activities related to communication, such as receiving and producing messages and engaging in conversations (4). Accessing information in all its forms is also considered under communication. Devices for communication are often categorized as “augmentative and alternative communication” (AAC) devices and include communication boards, speech amplifiers, speaking valves, electronic speech output devices and computer speech programmes with eye tracking or head tracking technology. Computer technology: examples include alternative input devices such as joysticks and touch screens, which enable control of the cursor on the computer screen (128); expanded and modified keyboards; mouth stick controls; voice input switches (129); eye gaze switches that use eye movements to select targets on an on-screen keyboard; and brainwave technology that responds to excitation of α waves to trigger the selection (130). Bathing and showering: shower chairs, bath benches, transfer boards, grab bars, bath mitts, long-handled bath sponges and brushes. Grooming and hygiene: hairbrushes, combs, toothbrushes, razors, mirrors with built-up, extended or angled handles. Toileting: bedpans, commode chairs, adapted toilet seats. Dressing: dressing sticks, buttonhooks, zipper pulls, long-handled sock, stocking and shoe aids. Eating and drinking: plates and bowls with raised edges; utensils with built-up, weighted, angled handles; cups with lids, straws, modified handles or two handles. Examples are extensive and include: nonslip mats to prevent plates and boards from slipping; modified cutting boards to stabilize food while chopping; cooking utensils with angled, comfortable handles; jar and bottle openers; kettle tippers; tap and knob turners. Where food is cooked over a fire or on the ground, low trolleys to move items from place to place, non-tip pots and pans, and reachers to push or pull hot items can be useful. Purpose/Benefit People with SCI often identify transport as a major barrier. Driving an adapted vehicle facilitates community reintegration, access to employment, access to health-care services, and small health-related quality-of-life gains (127 ). High-level SCI can affect the respiratory muscles, and mechanical ventilation may be required via a tracheotomy. Speaking valves can assist people with tracheotomies to produce speech. If speech is weak or cannot be produced, AAC will enable people to express themselves. Computer technology allows people to access information on the Internet, offers an alternative or additional means to communicate, and enables participation in education, work and leisure.
Self-care This area includes activities related to caring for oneself, such as washing oneself, caring for body parts, toileting, dressing, eating and drinking.
Self-care devices enable people with limited physical function (both upper and lower body difficulties) to perform self-care activities with little or no assistance. Weak grip, poor coordination or limited ranges of motion are compensated for to allow a person to move and manipulate objects. Appropriate management of self-care activities is essential for individuals returning to social roles such as school or work. Devices such as mirrors play an important role in the early identification of pressure ulcers.
Domestic life This area includes activities related to domestic and everyday actions and tasks such as preparing meals and doing housework.
The technologies enable people with limited physical function (both upper and lower body difficulties) to perform domestic activities with little or no assistance.
continues …
80
Chapter 4 Health care and rehabilitation needs
… continued Activity areas Other Environmental control units Examples Examples include: remote controls and special adaptations to switches to make them accessible (e.g. switches that can be activated by head position, chin, eyebrows or breath). Purpose/Benefit People living SCI may lose the ability to control devices in their immediate environment such as the television, computer, telephone, lights and doors. Environmental control systems enable them to re-establish this control (131).
Access to a broad range of assistive technology can enable people with SCI to perform everyday activities that they would otherwise be unable to perform (115, 117, 126, 132–135). Assistive technology can assist people with SCI to achieve greater independence and autonomy in their daily lives, e.g. wheelchairs allow people with SCI to be mobile in their communities (136). Environmental control systems can enable people to re-establish control over devices in their immediate environment, such as the television, computer, telephone, lights and doors (131). A Canadian study showed that people who used environmental control systems had greater functional abilities for 75% of tasks associated with activities of daily living, which had a very positive psychosocial impact on their lives (137). Use of assistive technology has been associated with greater participation in community, social and civil life (138–140). Assistive technology can play a vital role for children with SCI in promoting learning and development (141) and in enabling mobility, education and social engagement (142). Assistive technology contributes to successful employment outcomes (117) and can help ensure the reintegration and inclusion of people with SCI in society (122, 133). Assistive technology can also improve quality of life. For instance, studies have shown that the use of environmental control systems has a positive impact on user’s perceptions of their competency, adaptability and self-esteem (137,
Outcomes associated with assistive technology
143) and can result in higher levels of satisfaction with quality of life than that of non-users (144). People with SCI who do not use assistive technology may experience functional limitations and increased dependency on others for assistance (144). Assistive technology can reduce the level of dependence on caregivers (145) and can reduce the time and physical burden for caregivers (132), as reported by caregivers of children with neuromuscular conditions in Guatemala (139). Economic benefits from assistive technology include reduction of costs associated with family assistance, such as wage loss, and the costs of formal support services (44, 132, 146, 147).
Health maintenance As outlined in Chapter 2, life expectancy of people with SCI has steadily improved over time as a result of advances in medicine and improved access to medical care, rehabilitation and systems of support (148–150). While life expectancy is beginning to approach that of the general population in developed countries, it is far from equal in developing countries, where morbidity and mortality rates are likely to remain high without increased investment. There is evidence that, as a population, people with disabilities experience poorer health outcomes than the general population (44). This is also true for people with SCI, who experience what is often referred to as a “narrower or thinner” margin of health. This is strongly influenced by the nature of the SCI, i.e. the severity and level of injury (150). As indicated previously, 81
International Perspectives on Spinal Cord Injury
people with SCI are at a high risk of secondary conditions such as pneumonia, pressure ulcers and UTIs (49, 151). These conditions frequently lead to hospitalization and can also result in increased costs for care, reduced employability, decreased quality of life and lowered life expectancy (49, 152–155). People with SCI are also at risk of the same chronic health conditions as the general population, e.g. heart disease, stroke, diabetes. However, there is evidence that people with SCI may have a higher prevalence of these diseases than the general population (156–160). Ischaemic heart disease has been cited as a leading cause of death in the SCI population in Australia, at a rate significantly higher than that in the general population (157). Chronic conditions in people with SCI are linked to changes in body composition, such as reduced muscle mass and increased adipose tissue, lower activity levels as a result of paralysis, autonomic dysfunction, and metabolic changes (152, 156, 158, 161). There may also be links to other risk factors, such as poor diet, smoking and alcohol use, which may be heightened in the SCI population (159, 162, 163). Maintaining the long-term health status of people with SCI requires recognition that:
(i) they are at risk of health issues that are specifically related to their SCI, and they therefore require ongoing access to both general and specialist services (151); and (ii) they are also at risk of developing the same health issues as the general population and therefore require access to mainstream services such as health promotion, preventive care (immunization, health screening), and treatment for acute and chronic illness (44). Involvement in physical activity has benefits for physiological health and well-being, but adherence to a regular exercise programme may be hard to maintain (164) if environmental barriers exists, since they are strongly associated with reduced physical activity (165). Table 4.3 provides some of the specific and mainstream health maintenance measures that are relevant to people with SCI. It should be noted that this table provides an overview only and that consideration must be given to specific guidelines and standards within each country. Health-care providers, people with SCI and family members should all be involved in the development and implementation of a health maintenance plan.
Table 4.3. Examples of health maintenance measures Health area Genitourinary Measure Review bladder management programmes regularly. Investigate further if there are changes in bladder function (e.g. urinary retention, episodes of incontinence, UTIs, blood in urine). Test renal function. Carry out regular imaging of the urinary tract. Conduct prostate cancer screening for men. Review bowel management programmes regularly. Investigate further if there are changes in bowel function (e.g. constipation, diarrhoea). Perform a digital rectal exam routinely from middle age. Encourage a high-fibre diet and regular daily fluid (water) intake. Carry out regular monitoring of bowel function, including the frequency, colour and consistency of stools.
Bowel
continues … 82
Chapter 4 Health care and rehabilitation needs
… continued Health area Cardiovascular Measure Check cholesterol, lipids and blood pressure regularly. Review risk factors (e.g. diet and smoking). Provide education and support for control of risk factors. Encourage regular aerobic exercise each week. Screen and monitor psychosocial functioning (e.g. depression). Review capacity of caregivers to provide and sustain support. Provide education and support on appropriate diet and exercise. Encourage community participation. Review neuromusculoskeletal function, particularly if there are changes in sensation, muscle strength/tone, joint range of movement, or increased pain. Provide education and training to prevent injuries due to overuse, particularly in the upper limbs. Encourage regular exercise each week. Review assistive technology to ensure proper fit and function. Provide education on strategies to prevent and manage infection. Perform regular respiratory tests (e.g. vital capacity, peak flow). Immunize against influenza and pneumococcal pneumonia. Provide support and encouragement for cessation of smoking. Conduct pap smear and gynaecological examination for women. Conduct mammogram for women. Provide education on how to perform daily skin checks. Provide advice on appropriate nutrition. Provide education on changing posture every two hours. Review assistive technology regularly to ensure proper fit and function (e.g. wheelchair/seating systems).
Mental health and well-being
Neurological/ musculoskeletal
Respiratory
Sexual and reproductive function Skin
Sources (47, 76, 95, 152, 156, 157, 159, 164).
Conclusion and recommendations The provision of appropriate and timely medical care and rehabilitation (including assistive technology) can have a significant impact on mortality, morbidity and disability in people with SCI. Access to both specialized and mainstream health care can lead to better outcomes and a productive and enjoyable life for people with SCI. It should be stressed that this chapter is intended to provide only a broad overview of the health needs of people with SCI. Should comprehensive clinical guidance be required, it
should be sourced from peer-reviewed journals, medical/rehabilitation textbooks, manuals and guidelines, relevant health workers and professional organizations, and adapted for use to the specific country and context. Chapter 5 explores what countries can do to improve the capacity of their health systems to meet the needs of people with SCI. The policy and practice implications of the analysis of health needs of people with SCI given in Chapter 4 are that the following issues should be addressed. ■ There must be prompt access to specialized health-care services immediately after injury to address complex issues associated 83
International Perspectives on Spinal Cord Injury
■
■ ■
■
with SCI and to preserve neurological function where possible. Access to rehabilitation should be as early as possible, i.e. during the acute phase of injury, and provided on a continuum to maximize functional outcomes and facilitate transition to community living. Access to a range of assistive technologies will help accommodate changes in function and will maximize independence. Follow-up care should be provided to address issues that may arise following discharge from rehabilitation services, particularly during the first 12 months after injury. It must be recognized that people with SCI are at high risk of secondary complications, such as pneumonia, UTIs and pressure ulcers, and therefore require access to ongoing mainstream or specialized medical care.
■ People with SCI also require access to main-
stream health-care services − including health promotion, prevention and medical care − to address acute and chronic illnesses that are also present in the general population. ■ A coordinated, integrated and multidisciplinary approach that includes people with SCI and their family members will help ensure a smooth transition between inpatient, outpatient and community-based care. ■ People with SCI and their family members must be educated and empowered to ensure that they are able to look after their own health to the greatest extent possible. ■ There must be ongoing clinical research to determine the best possible rehabilitation measures to restore function in different contexts.
References United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 2. Kirshblum SC et al. International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 2011, 34:535-546. doi: http://dx.doi.org/10.1179/204577211X13207446293695 PMID:22330108 3. Alexander MS et al. International standards to document remaining autonomic function after spinal cord injury. Spinal Cord, 2009, 47:36-43. doi: http://dx.doi.org/10.1038/sc.2008.121 PMID:18957962 4. WHO. International classification of functioning, disability and health. Geneva, World Health Organization, 2001. 5. Krassioukov A et al. A systematic review of the management of orthostatic hypotension after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:876-885. doi: http://dx.doi.org/10.1016/j.apmr.2009.01.009 PMID:19406310 6. Consortium for Spinal Cord Medicine. Autonomic dysreflexia: what you should know. Washington, DC, Paralyzed Veterans of America, 1997. 7. Krassioukov A et al. Autonomic dysreflexia following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–33 (http://www.scireproject. com/rehabilitation-evidence, accessed 25 April 2012). 8. Teasell RW et al. Venous thromboembolism following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 9. Geerts WH et al. Prevention of venous thromboembolism: American College of Chest Physicians evidence-based clinical practice guidelines, 8th ed. Chest, 2008, 133(6):381S–453S. 10. Illman A, Stiller K, Williams M. The prevalence of orthostatic hypotension during physiotherapy treatment in patients with an acute spinal cord injury. Spinal Cord, 2000, 38:741-747. doi: http://dx.doi.org/10.1038/sj.sc.3101089 PMID:11175374 11. Claydon VE, Krassioukov A. Orthostatic hypotension and autonomic pathways after spinal cord injury. Journal of Neurotrauma, 2006, 23:1713-1725. doi: http://dx.doi.org/10.1089/neu.2006.23.1713 PMID:17184183 12. Krassioukov A et al. Orthostatic hypotension following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–20. (http://www.scireproject. com/rehabilitation-evidence, accessed 25 April 2012). 13. Bryce T. Spinal Cord Injury. New York, Demos Medical, 2010. 1.
84
Chapter 4 Health care and rehabilitation needs
14. Cardenas DD et al. Impact of urinary tract infection educational program in persons with spinal cord injury. The Journal of Spinal Cord Medicine, 2004, 27:47-54. PMID:15156937 15. Consortium for Spinal Cord Medicine. Bladder management for adults with spinal cord injury: a clinical practice guideline for health-care providers. Washington, DC, Paralyzed Veterans of America, 2006. 16. Wolfe DL et al. Bladder health and function following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 17. National Institute on Disability and Rehabilitation Research. The prevention and management of urinary tract infections among people with spinal cord injuries. National Institute on Disability and Rehabilitation Research Consensus Statement. January 27−29 1992. The Journal of the American Paraplegia Society, 1992, 15:194-204. PMID:1500945 18. Hsieh JTC et al. Spasticity following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 19. Harvey L. Management of spinal cord injury: a guide for physiotherapists. London, Elsevier, 2008. 20. Katalinic OM et al. Stretch for the treatment and prevention of contractures [review]. Cochrane database of systematic reviews (Online), 2010, (9):CD007455. PMID:20824861 21. Ashe MC et al. Bone health following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–26. 22. Craven BC et al. Detection and treatment of sublesional osteoporosis among patients with chronic spinal cord injury: proposed paradigms. Topics in Spinal Cord Injury Rehabilitation, 2009, 14:1-22. doi: http://dx.doi.org/10.1310/sci1404-1 23. Eser P et al. Bone loss and steady state after spinal cord injury: a cross-sectional study using pQCT. Journal of Musculoskeletal & Neuronal Interactions, 2004, 4:197-198. PMID:15615125 24. Frey-Rindova P et al. Bone mineral density in upper and lower extremities during 12 months after spinal cord injury measured by peripheral quantitative computed tomography. Spinal Cord, 2000, 38:26-32. doi: http://dx.doi.org/10.1038/ sj.sc.3100905 PMID:10762194 25. Biering-Sørensen F et al. Non-pharmacological treatment and prevention of bone loss after spinal cord injury: a systematic review. Spinal Cord, 2009, 47:508-518. doi: http://dx.doi.org/10.1038/sc.2008.177 PMID:19172152 26. Teasell RW et al. Heterotopic ossification following spinal cord injury. Syringomyelia following spinal cord injury. In: Eng JJ et al, eds. Spinal cord injury rehabilitation evidence, version 4. Vancouver, SCIRE, 2012. (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 27. Winslow C, Rozovsky J. Effect of spinal cord injury on the respiratory system. American Journal of Physical Medicine & Rehabilitation, 2003, 82:803-814. doi: http://dx.doi.org/10.1097/01.PHM.0000078184.08835.01 PMID:14508412 28. Zimmer MB, Nantwi K, Goshgarian H. Effect of spinal cord injury on the respiratory sysem: basic research and current clinical treatment options. The Journal of Spinal Cord Medicine, 2007, 30:319-330. PMID:17853653 29. Sheel AW et al. Respiratory management. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence,Volume 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–46 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 30. Consortium for Spinal Cord Medicine. Respiratory management following spinal cord injury: a clinical practice guideline for health-care professionals. Washington, DC, Paralyzed Veterans of America, 2005. 31. Onders RP. Complete worldwide operative experience in laparoscopic diaphragm pacing: results and differences in spinal cord injured patients and amyotrophic lateral sclerosis patients. Surgical Endoscopy, 2009, 23:1433-1440. doi: http://dx.doi. org/10.1007/s00464-008-0223-3 PMID:19067067 32. Brown R et al. Respiratory dysfunction and management in spinal cord injury. Respiratory Care, 2006, 51:853-868. PMID:16867197 33. Baastrup C, Finnerup N. Pharmacological management of neuropathic pain following spinal cord injury. CNS Drugs, 2008, 22:455-475. doi: http://dx.doi.org/10.2165/00023210-200822060-00002 PMID:18484790 34. Cardenas DD, Jensen M. Treatments for chronic pain in persons with spinal cord injury: a survey study. The Journal of Spinal Cord Medicine, 2006, 29:109-117. PMID:16739554 35. Dijkers M et al. Prevalence of chronic pain after traumatic spinal cord injury: a systematic review. Journal of Rehabilitation Research and Development, 2009, 46:13-29. doi: http://dx.doi.org/10.1682/JRRD.2008.04.0053 PMID:19533517 36. Bryce TN et al. International spinal cord injury pain classification: Part I: background and description. [Epub ahead of print] Spinal Cord, 2012, PMID:22182852 37. Bryce TN et al. International spinal cord injury pain (ISCIP) classification: Part 2: initial validation using vignettes. [Epub ahead of print]Spinal Cord, 2012, PMID:22310319
85
International Perspectives on Spinal Cord Injury
38. Finnerup NB, Baastrup C, Jensen TS. Neuropathic pain following spinal cord injury pain: mechanisms and treatment. Scandinavian Journal of Pain, 2009, 1 S1:S3-S11. doi: http://dx.doi.org/10.1016/S1877-8860(09)70003-5 39. Turner JA, Cardenas DD, Warms CA, McClellan CB. Chronic pain associated with spinal cord injuries: a community survey. Archives of Physical Medicine and Rehabilitation, 2001, 82:501-509. doi: http://dx.doi.org/10.1053/ apmr.2001.21855 PMID:11295011 40. Cardenas DD et al. Gender and minority differences in the pain experience of people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1774-1781. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.027 PMID:15520972 41. Jensen MP et al. The impact of neuropathic pain on health-related quality of life: review and implications. Neurology, 2007, 68:1178-1182. doi: http://dx.doi.org/10.1212/01.wnl.0000259085.61898.9e PMID:17420400 42. Sawatzky B et al. Classification and measurement of pain in the spinal cord-injured population. Spinal Cord, 2008, 46:2-10. doi: http://dx.doi.org/10.1038/sj.sc.3102137 PMID:17968403 43. United States Congress. Assistive Technology Act. United States Congress 2004 (Public Law 108–364) (http://www.ataporg. org/summaryact.html, accessed 2 August 2011). 44. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf, accessed 10 May 2012). 45. WHO. Consensus conference on wheelchairs for developing countries, Bengaluru, India, 6−11 November 2006 http://www. who.int/disabilities/technology/Wheelchair%20Consensus%20Conference%20Report_Jan08.pdf, accessed 29 May 2012). 46. Consortium for Spinal Cord Medicine. Pressure ulcer prevention and treatment following spinal cord injury: a clinical practice guideline for health care professionals. Washington, DC, Paralyzed Veterans of America, 2000. 47. Regan M et al. Pressure ulcers following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4, Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 48. Tharion G et al. Guidelines for care of persons with spinal cord injury in the community. Vellore, Christian Medical College, 2009. 49. Cardenas DD et al. Etiology and incidence of re-hospitalization after traumatic spinal cord injury: a multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2004, 85:1757-1763. doi: http://dx.doi.org/10.1016/j.apmr.2004.03.016 PMID:15520970 50. Gélis A et al. Therapeutic education in persons with spinal cord injury: a review of the literature. Annals of Physical and Rehabilitation Medicine, 2011, 54:189-210. doi: http://dx.doi.org/10.1016/j.rehab.2011.03.004 PMID:21530443 51. Consortium for Spinal Cord Medicine. Early acute management in adults with spinal cord injury: a clinical practice guideline for health-care providers. Washington, DC, Paralyzed Veterans of America, 2008. 52. Bernhard M et al. Spinal cord injury (SCI): prehospital management. Resuscitation, 2005, 66:127-139. doi: http://dx.doi. org/10.1016/j.resuscitation.2005.03.005 PMID:15950358 53. Harris MB, Sethi RK. The initial assessment and management of the multiple-trauma patient with an associated spinal injury. Spine, 2006, 31:S9-S15. doi: http://dx.doi.org/10.1097/01.brs.0000217924.56853.0d PMID:16685243 54. WHO. Guidelines for essential trauma care. Geneva, World Health Organization, 2004. 55. WHO. Prehospital trauma care systems. Geneva, World Health Organization, 2005. 56. Fehlings MG et al. Early versus delayed decompression for traumatic cervical spinal cord injury: results of Surgical Timing in Acute Spinal Cord Injury Study (STASCIS). PLoS ONE, 2012, 7: doi: http://dx.doi.org/10.1371/journal. pone.0032037 PMID:22384132 57. Bagnall AM et al. Spinal fixation surgery for acute traumatic spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (1):CD004725. PMID:18254059 58. Fehlings M, Perrin R. The role and timing of early decompression for cervical spinal cord injury: update with a review of recent clinical evidence. Injury, 2005, 36:S13-S26. doi: http://dx.doi.org/10.1016/j.injury.2005.06.011 59. Fehlings MG. The timing of surgical intervention in the treatment of spinal cord injury: a systematic review of recent clinical evidence. Spine, 2006, 31:S28-S35. doi: http://dx.doi.org/10.1097/01.brs.0000217973.11402.7f PMID:16685233 60. Rechtine GR. Nonoperative management and treatment of spinal injuries. Spine, 2006, 31 Suppl:S22-S27. doi: http://dx.doi. org/10.1097/01.brs.0000217947.43730.a6 PMID:16685232 61. Wood K et al. Operative compared with nonoperative treatment of a thoracolumbar burst fracture without neurological deficit. A prospective, randomized study. The Journal of Bone and Joint Surgery, 2003, 85-A:773-781. PMID:12728024 62. Harrop JS et al. Neurological manifestations of cervical spondylosis: an overview of signs, symptoms, and pathophysiology. Neurosurgery, 2007, 60 Supp1 1;S14–S20. doi:10.1227/01.NEU.0000215380.71097.EC doi: http://dx.doi.org/10.1227/01. NEU.0000215380.71097.EC PMID:17204875
86
Chapter 4 Health care and rehabilitation needs
63. Vanichkachorn JS, Vaccaro AR. Thoracic disk disease: diagnosis and treatment. The Journal of the American Academy of Orthopaedic Surgeons, 2000, 8:159-169. PMID:10874223 64. NCC-C. Metastatic spinal cord compression: diagnosis and management of patients at risk of or with metastatic spinal cord compression. Cardiff, National Collaborating Centre for Cancer, 2008. 65. Lederle FA et al. Outcomes following endovascular vs open repair of abdominal aortic aneurysm: a randomized trial. Journal of the American Medical Association, 2009, 302:1535-1542. doi: http://dx.doi.org/10.1001/jama.2009.1426 PMID:19826022 66. Wang VY, Chou D, Chin C. Spine and spinal cord emergencies: vascular and infectious causes. Neuroimaging Clinics of North America, 2010, 20:639-650. doi: http://dx.doi.org/10.1016/j.nic.2010.07.006 PMID:20974380 67. Quiñones-Hinojosa A et al. General principles in the medical and surgical management of spinal infections: a multidisciplinary approach. Neurosurgical Focus, 2004, 17:E1-E15. PMID:15636566 68. Anderson KD. Targeting recovery: priorities of the spinal cord injured population. Journal of Neurotrauma, 2004, 21:13711383. doi: http://dx.doi.org/10.1089/neu.2004.21.1371 PMID:15672628 69. Anderson KD et al. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 2007, 45:328-337. PMID:17033620 70. Ditunno PL et al. Who wants to walk? Preferences for recovery after SCI: a longitudinal and cross-sectional study. Spinal Cord, 2008, 46:500-506. doi: http://dx.doi.org/10.1038/sj.sc.3102172 PMID:18209742 71. Snoek GJ et al. Survey of the needs of patients with spinal cord injury: impact and priority for improvement in hand function in tetraplegics. Spinal Cord, 2004, 42:526-532. doi: http://dx.doi.org/10.1038/sj.sc.3101638 PMID:15224087 72. Chang SM et al. Urologic status of 74 spinal cord injury patients from the 1976 Tangshan earthquake, and managed for over 20 years using the Crede maneuver. Spinal Cord, 2000, 38:552-554. doi: http://dx.doi.org/10.1038/sj.sc.3101060 PMID:11035477 73. Weld KJ, Dmochowski RR. Effect of bladder management on urological complications in spinal cord injured patients. The Journal of Urology, 2000, 163:768-772. doi: http://dx.doi.org/10.1016/S0022-5347(05)67800-7 PMID:10687973 74. Wyndaele JJ. Intermittent catheterization: which is the optimal technique? Spinal Cord, 2002, 40:432-437. doi: http://dx.doi. org/10.1038/sj.sc.3101312 PMID:12185603 75. Correa GI, Rotter KP. Clinical evaluation and management of neurogenic bowel after spinal cord injury. Spinal Cord, 2000, 38:301-308. doi: http://dx.doi.org/10.1038/sj.sc.3100851 PMID:10822403 76. Consortium for Spinal Cord Medicine. Neurogenic bowel management in adults with spinal cord injury. Washington, DC, Paralyzed Veterans of America, 1998. 77. Krassioukov A et al. Neurogenic bowel following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–41 (http://www.scireproject. com/rehabilitation-evidence, accessed 25 April 2012). 78. Yasmeen R et al. How do patients with chronic spinal injury in Pakistan manage their bowels? A cross-sectional survey of 50 patients. Spinal Cord, 2010, 48:872-875. doi: http://dx.doi.org/10.1038/sc.2010.46 PMID:20440300 79. Ayaş S et al. The effect of abdominal massage on bowel function in patients with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2006, 85:951-955. doi: http://dx.doi.org/10.1097/01.phm.0000247649.00219.c0 PMID:17117000 80. Branagan G et al. Effect of stoma formation on bowel care and quality of life in patients with spinal cord injury. Spinal Cord, 2003, 41:680-683. doi: http://dx.doi.org/10.1038/sj.sc.3101529 PMID:14639447 81. Coggrave M et al. Progressive protocol in the bowel management of spinal cord injuries. British Journal of Nursing, 2006, 15:1108-1113. PMID:17170659 82. Consortium for Spinal Cord Medicine. Sexuality and reproductive health in adults with spinal cord injury: a clinical practice guideline for health-care professionals. Washington, DC, Paralyzed Veterans of America, 2010. 83. Kreuter M, Siosteen A, Biering-Sorensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. Journal of Rehabilitation Medicine, 2008, 40:61-69. doi: http://dx.doi.org/10.2340/16501977-0128 PMID:18176739 84. Kreuter M et al. Women’s sexual functioning and sex life after spinal cord injury. Spinal Cord, 2011, 49:154-160. doi: http:// dx.doi.org/10.1038/sc.2010.51 PMID:20458327 85. Sipski ML, Richards JS. Spinal cord injury rehabilitation. American Journal of Physical Medicine & Rehabilitation, 2006, 85:310-342. doi: http://dx.doi.org/10.1097/01.phm.0000202105.87011.bf PMID:16554684 86. Burns AS, Ditunno J. Establishing prognosis and maximizing functional outcomes after spinal cord injury. Spine, 2001, 26 Suppl:S137-S145. doi: http://dx.doi.org/10.1097/00007632-200112151-00023 PMID:11805621 87. Kirshblum S et al. Rehabilitation of Spinal Cord Injury. In: Campagnolo D et al., eds. Spinal Cord Medicine. 2nd ed. Philadelphia, PA, Lippincott Williams & Wilkins, 2011: 312-313.
87
International Perspectives on Spinal Cord Injury
88. Beekhuizen KS, Field-Fote EC. Sensory stimulation augments the effects of massed practice training in persons with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2008, 89:602-608. doi: http://dx.doi.org/10.1016/j. apmr.2007.11.021 PMID:18373988 89. Connolly SJ et al. Upper limb rehabilitation following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 90. Kloosterman MGM, Snoek GJ, Jannink NJA. Systematic review of the effects of exercise therapy on the upper extremity of patients with spinal-cord injury. Spinal Cord, 2009, 47:196-203. doi: http://dx.doi.org/10.1038/sc.2008.113 PMID:18825160 91. Lam T et al. Lower limb rehabilitation following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–47 (http://www.scireproject. com/rehabilitation-evidence, accessed 25 April 2012). 92. Mehrholz J et al. Locomotor training for walking after spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (2):CD006676. PMID:18425962 93. Kreutz D. Standing frames and standing wheelchairs: implications for standing. Topics in Spinal Cord Injury Rehabilitation, 2000, 5:24-28. doi: http://dx.doi.org/10.1310/P8YC-WGEH-C1VP-2VC1 94. Shields RK, Dudley-Javoroski S. Musculoskeletal plasticity after acute spinal cord injury: effects of long-term neuromuscular electrical stimulation training. Journal of Neurophysiology, 2006, 95:2380-2390. doi: http://dx.doi.org/10.1152/ jn.01181.2005 PMID:16407424 95. Wolfe DL et al. Physical activity and SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 96. Borg J, Lindström A, Larsson S. Assistive technology in developing countries: a review from the perspective of the Convention on the Rights of Persons with Disabilities. Prosthetics and Orthotics International, 2011, 35:20-9. doi: http:// dx.doi.org/10.1177/0309364610389351 PMID:21515886 97. Bryden AM et al. Perceived outcomes and utilization of upper extremity surgical reconstruction in individuals with tetraplegia at model spinal cord injury systems. Spinal Cord, 2004, 42:169-176. doi: http://dx.doi.org/10.1038/sj.sc.3101579 PMID:14758349 98. Wuolle KS et al. Satisfaction with upper-extremity in individuals with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2003, 84:1145-1149. doi: http://dx.doi.org/10.1016/S0003-9993(03)00292-2 PMID:12917852 99. Snoek GJ et al. Decision for reconstructive interventions of the upper limb in individuals with tetraplegia: the effect of treatment characteristics. Spinal Cord, 2008, 46:228-233. doi: http://dx.doi.org/10.1038/sj.sc.3102110 PMID:17680013 100. Bombardier CH et al. Do preinjury alcohol problems predict poorer rehabilitation progress in persons with spinal cord injury? Archives of Physical Medicine and Rehabilitation, 2004, 85:1488-1492. doi: http://dx.doi.org/10.1016/j. apmr.2003.10.010 PMID:15375822 101. Fann JR et al. Depression after spinal cord injury: comorbidities, mental health service use, and adequacy of treatment. Archives of Physical Medicine and Rehabilitation, 2011, 92:352-360. doi: http://dx.doi.org/10.1016/j.apmr.2010.05.016 PMID:21255766 102. Hastings J et al. The differences in self-esteem, function, and participation between adults with low cervical motor tetraplegia who use power or manual wheelchairs. Archives of Physical Medicine and Rehabilitation, 2011, 92:1785-1788. doi: http://dx.doi.org/10.1016/j.apmr.2011.03.023 PMID:21762872 103. Krause JS. Depression after spinal cord injury: relation to gender, ethnicity, ageing and socioeconomic indicators. Archives of Physical Medicine and Rehabilitation, 2000, 81:1099-1109. doi: http://dx.doi.org/10.1053/apmr.2000.7167 PMID:10943762 104. Kennedy P, Evans M, Sandhu N. Psychological adjustment to spinal cord injury: the contribution of coping, hope and cognitive appraisals. Psychology Health and Medicine, 2009, 14:17-33. doi: http://dx.doi.org/10.1080/13548500802001801 PMID:19085309 105. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http:// dx.doi.org/10.1038/sc.2011.182 106. Consortium for Spinal Cord Medicine. Depression following spinal cord injury: a clinical practice guideline for primary care physicians. Paralyzed Veterans of America, 1998. 107. Kennedy P et al. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injury. The British Journal of Clinical Psychology, 2003, 42:41-52. doi: http://dx.doi.org/10.1348/014466503762842002 PMID:12675978 108. Boschen KA, Tonack M, Gargaro J. Long-term adjustment and community reintegration following spinal cord injury. International Journal of Rehabilitation Research, 2003, 26:157-164. doi: http://dx.doi.org/10.1097/00004356-20030900000001 PMID:14501566 109. Kroll T, ed. Focus on disability: trends in research and application. Hauppauge, NY, Nova Science Publishers, 2008.
88
Chapter 4 Health care and rehabilitation needs
110. Ljungberg I et al. Using peer mentoring for people with spinal cord injury to enhance self-efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 2011, 20:351-358. doi: http://dx.doi.org/10.1111/j.13652702.2010.03432.x PMID:21219518 111. Sherman JE, DeVinney DJ, Sperling KB. Social support and adjustment after spinal cord injury: influence of past peermentoring experiences and current live-in partner. Rehabilitation Psychology, 2004, 49:140-149. doi: http://dx.doi. org/10.1037/0090-5550.49.2.140 112. Tate DG, Boninger ML, Jackson AB. Future directions for spinal cord injury research: recent developments and model systems contributions. Archives of Physical Medicine and Rehabilitation, 2011, 92:509-515. doi: http://dx.doi.org/10.1016/j. apmr.2010.07.243 PMID:21353833 113. Bergström AL, Samuelsson K. Evaluation of manual wheelchairs by individuals with spinal cord injuries. Disability and Rehabilitation. Assistive Technology, 2006, 1:175-182. doi: http://dx.doi.org/10.1080/17483100600573230 PMID:19260185 114. Sisto SA, Forrest GF, Faghri PD. Technology for mobility and quality of life in spinal cord injury: analyzing a series of options available. IEEE Engineering in Medicine and Biology Magazine, 2008, 27:56-68. doi: http://dx.doi.org/10.1109/ EMB.2007.907398 PMID:18463021 115. Biering-Sørensen F, Hansen RB, Biering-Sørensen J. Mobility aids and transport possibilities 10–45 years after spinal cord injury. Spinal Cord, 2004, 42:699-706. doi: http://dx.doi.org/10.1038/sj.sc.3101649 PMID:15289807 116. Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 2001, 15:600-606. doi: http://dx.doi.org/10.1191/0269215501cr453oa PMID:11777090 117. Hedrick B et al. Employment issues and assistive technology use for persons with spinal cord injury. Journal of Rehabilitation Research and Development, 2006, 43:185-198. doi: http://dx.doi.org/10.1682/JRRD.2005.03.0062 PMID:16847785 118. Phillips B, Zhao H. Predictors of assistive technology abandonment. Assistive Technology, 1993, 5:36-45. doi: http://dx.doi. org/10.1080/10400435.1993.10132205 PMID:10171664 119. Dieruf K, Ewer L, Boninger D. The natural-fit handrim: factors related to improvement in symptoms and function in wheelchair users. The Journal of Spinal Cord Medicine, 2008, 31:578-585. PMID:19086716 120. Ayyappa MS, Downs K. Spinal orthoses in spinal cord medicine: principles and practice. New York, Demos Medical Publishing Inc., 2003. 121. Yamane A. Lower limb orthoses and rehabilitation. New York, NY, Demos Medical Publishing Inc, 2003. 122. Scherer MJ, Cushman LA. Measuring subjective quality of life following spinal cord injury: a validation study of the assistive technology device predisposition assessment. Disability and Rehabilitation, 2001, 23:387-393. doi: http://dx.doi. org/10.1080/09638280010006665 PMID:11394589 123. Chen YL et al. A head orientated wheelchair for people with disabilities. Disability and Rehabilitation, 2003, 25:249-253. doi: http://dx.doi.org/10.1080/0963828021000024979 PMID:12623613 124. Regan MA et al. A systematic review of the therapeutic interventions for pressure ulcers after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:213-231. doi: http://dx.doi.org/10.1016/j.apmr.2008.08.212 PMID:19236976 125. Atkins MA, Clark D, Waters RL, eds. Upper limb orthoses in spinal cord medicine: principles and practice. New York, Demos Medical Publishing Inc., 2003. 126. Atkins MS et al. Mobile arm supports: evidence-based benefits and criteria for use. The Journal of Spinal Cord Medicine, 2008, 31:388-393. PMID:18959356 127. Norweg A et al. Patterns, predictors, and associated benefits of driving a modified vehicle after spinal cord injury: findings from the national spinal cord injury model systems. Archives of Physical Medicine and Rehabilitation, 2011, 92:477-483. doi: http://dx.doi.org/10.1016/j.apmr.2010.07.234 PMID:21353830 128. Bodine C, Buning M. The role of assistive technology in rehabilitation. In: Braddom R, ed. Physical medicine & rehabilitation, 3rd ed. Cambridge, MA, Elsevier, 2005. 129. Goodman N, Jette AM. Computer and Internet use by persons after traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:1492-1498. doi: http://dx.doi.org/10.1016/j.apmr.2007.12.038 PMID:18674985 130. Sears A, Young M. The human-computer interaction handbook: fundamentals, evolving technologies and emerging applications. Hillsdale, NJ, L Erlbaum Associates Inc, 2002. 131. Craig A et al. The effectiveness of a hands-free environmental control system for the profoundly disabled. Archives of Physical Medicine and Rehabilitation, 2002, 83:1455-1458. doi: http://dx.doi.org/10.1053/apmr.2002.34624 PMID:12370885 132. Allen S, Resnik L, Roy J. Promoting independence for wheelchair users: the role of home accommodations. The Gerontologist, 2006, 46:115-123. doi: http://dx.doi.org/10.1093/geront/46.1.115 PMID:16452291
89
International Perspectives on Spinal Cord Injury
133. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disability and Rehabilitation, 2003, 25:487-490. doi: http://dx.doi.org/10.1080/0963828031000071723 PMID:12745944 134. Driscoll MP, Rodger SA, De Jonge DM. Factors that prevent or assist the integration of assistive technology into the workplace for people with spinal cord injuries: perspectives of the users and their employers and co-workers. Journal of Vocational Rehabilitation, 2001, 16:53-66. 135. Scherer MJ. Living in the state of stuck. How technology impacts the lives of people with disabilities, 3rd edition. Cambridge, MA, Brookline Books, 2000. 136. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. 137. Rigby P et al. Impact of electronic aids to daily living on the lives of persons with cervical spinal cord injuries. Assistive Technology, 2005, 17:89-97. doi: http://dx.doi.org/10.1080/10400435.2005.10132099 PMID:16392713 138. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/ oti.228 PMID:17624872 139. Glumac LK et al. Guatemalan caregivers’ perceptions of receiving and using wheelchairs donated for their children. Pediatric Physical Therapy, 2009, 21:167-175. doi: http://dx.doi.org/10.1097/PEP.0b013e3181a34a2b PMID:19440126 140. Rushton PW et al. Satisfaction with participation using a manual wheelchair among individuals with spinal cord injury. Spinal Cord, 2010, 48:691-696. doi: http://dx.doi.org/10.1038/sc.2009.197 PMID:20125106 141. Judge S, Floyd K, Jeffs T. Using an assistive technology toolkit to promote inclusion. Early Childhood Education Journal, 2008, 36:121-126. doi: http://dx.doi.org/10.1007/s10643-008-0257-0 142. Ameratunga S et al. Rehabilitation of the injured child. Bulletin of the World Health Organization, 2009, 87:327. doi: http:// dx.doi.org/10.2471/BLT.09.057067 PMID:19551242 143. Ripat J. Function and impact of electronic aids to daily living for experienced users. Technology and Disability, 2006, 18:79-87. 144. Rigby P, Ryan SE, Campbell KA. Electronic aids to daily living and quality of life for persons with tetraplegia. Disability and Rehabilitation. Assistive Technology, 2011, 6:260-267. doi: http://dx.doi.org/10.3109/17483107.2010.522678 PMID:20883120 145. Agree EM et al. Reconsidering substitution in long-term care: when does assistive technology take the place of personal care? Journal of Gerontology: Social Sciences, 2005, 60:S272-S280. doi: http://dx.doi.org/10.1093/geronb/60.5.S272 PMID:16131628 146. Field MJ, Jette AM. The future of disability in America. Washington, DC, The National Academies Press, 2007. 147. Schraner I et al. Using the ICF in economic analyses of assistive technology systems: methodological implications of a user standpoint. Disability and Rehabilitation, 2008, 30:916-926. PMID:18484387 148. Yeo JD et al. Mortality following spinal cord injury. Spinal Cord, 1998, 36:329-336. doi: http://dx.doi.org/10.1038/ sj.sc.3100628 PMID:9601112 149. DeVivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and causes of death among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1411-1419. doi: http://dx.doi.org/10.1016/S00039993(99)90252-6 PMID:10569435 150. Krause JS et al. Health status, community integration, and economic risk factors for mortality after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1764-1773. doi: http://dx.doi.org/10.1016/j.apmr.2004.06.062 PMID:15520971 151. Chiodo AE et al. Spinal cord injury medicine: 5: long-term medical issues and health maintenance. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl. 1:S76-S83. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.015 PMID:17321853 152. Fernhall B et al. Health implications of physical activity in individuals with spinal cord injury: a literature review. Journal of Health and Human Services Administration, 2008,468-502. PMID:18236700 153. Krause JS, Saunders LL. Health, secondary conditions, and life expectancy after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:1770-1775. doi: http://dx.doi.org/10.1016/j.apmr.2011.05.024 PMID:22032212 154. McColl MA et al. Primary care for people with SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–24 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 155. Soden RJ et al. Causes of death after spinal cord injury. Spinal Cord, 2000, 38:604-610. doi: http://dx.doi.org/10.1038/ sj.sc.3101080 PMID:11093321 156. Bauman WA, Spungen AM. Coronary heart disease in individuals with spinal cord injury: assessment of risk factors. Spinal Cord, 2008, 46:466-476. doi: http://dx.doi.org/10.1038/sj.sc.3102161 PMID:18180789 157. Engel S, Leong G. Health maintenance for adults with spinal cord injuries: targeting health professionals. Sydney, NSW State Spinal Cord Injury Service, 2008.
90
Chapter 4 Health care and rehabilitation needs
158. Myers J, Lee M, Kiratli J. Cardiovascular disease in spinal cord injury: an overview of prevalance, risk, evaluation and management. American Journal of Physical Medicine & Rehabilitation, 2007, 86:142-152. doi: http://dx.doi.org/10.1097/ PHM.0b013e31802f0247 PMID:17251696 159. Warburton DER et al. Cardiovascular health and exercise following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–38 (http://www. scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 160. Wahman K et al. Cardiovascular disease risk factors in persons with paraplegia: the Stockholm spinal cord injury study. Journal of Rehabilitation Medicine, 2010, 42:272-278. doi: http://dx.doi.org/10.2340/16501977-0510 PMID:20419873 161. Cowan RE, Nash M. Cardiovascular disease, SCI and exercise: unique risks and focused countermeasures. Disability and Rehabilitation, 2010, 32:2228-2236. doi: http://dx.doi.org/10.3109/09638288.2010.491579 PMID:20524925 162. Johnston MV et al. Preventive services and health behaviors among people with spinal cord injury. The Journal of Spinal Cord Medicine, 2005, 28:43-54. PMID:15832903 163. Krause JS et al. Risk of mortality after spinal cord injury: an 8-year prospective study. Archives of Physical Medicine and Rehabilitation, 2009, 90:1708-1715. doi: http://dx.doi.org/10.1016/j.apmr.2009.04.020 PMID:19801060 164. Ditor DS. Maintenance of exercise participation in individuals with spinal cord injury: effects on quality of life, stress and pain. Spinal Cord, 2003, 41:446-450. doi: http://dx.doi.org/10.1038/sj.sc.3101487 PMID:12883542 165. Fekete C, Rauch A. Correlates and determinants of physical activity in persons with spinal cord injury: a review using the International Classification of Functioning, Disability and Health as reference framework. Disability and Health Journal, 2012, 5:140-150. doi: http://dx.doi.org/10.1016/j.dhjo.2012.04.003 PMID:22726854
91
Chapter 5 Health systems strengthening
“I got my injury at a time when my community’s main hospital was in a state of ruin. The surgery theatre was not working and therefore surgery could not take place! My family tried all they could to ask the hospital to transfer me to a neighbouring country but their efforts were in vain. The head of orthopaedics at that time was so barbaric that his words destroyed my will to fight. He came into my hospital room one day, rudely called my mother and family around, and said that I would be a vegetable for the rest of my life and would never be able to sit or walk again!” (Angela, Uganda) “I have positive experience with the doctors such as full detailed explanation of my disability, which makes it easier for me to understand my injury and help me to face it, plus encouragement from the doctors to live happily with my disability so that I can positively live with it. I find it challenging especially for long-term health maintenance because, for the spinal cord injury, we have to deal with many complication such as bowel, bladder, limb movement, and it will be a very hard task to achieve my health maintenance.” (Sulieman, Saudi Arabia) “One of the major problems that I faced after leaving the rehab centre was finding doctors who were familiar with the specific needs and problems of SCI patients. With the spasms it is difficult to travel, transfer and be in the examination chair. Because the spasms tended to be less frequent in the morning I generally asked for a morning appointment. But not many doctor’s offices were willing to do a favour like that. By the time I was eventually seen, my legs would be dancing around. Another problem was autonomic dysreflexia (AD). Almost 90% of the doctors outside the rehab centre were unaware of such a phenomenon. So, almost every time I had to explain that I will have AD when my leg bag is full or if the position is uncomfortable. Even after mentioning it, they forgot to regularly check the leg bag and I often wound up AD. I used to take my brother along to regularly check for the signs of AD.” (Alexis, India) “During the 2010 Haiti earthquake, I was hit by a wall and severely injured. My injuries were diagnosed as tetraplegia at the level of C6. Five months following the earthquake, I was re-admitted to Haiti Hospital Appeal for rehabilitation. There I received my first wheelchair. However this wheelchair did neither fit to my size (I am very tall) nor to the level of my spinal cord injury. In Haiti, the health system does not care for wheelchair provision, therefore you have try by yourself – and you have to pay by yourself. One year after the onset of my spinal cord injury, I received a new manual wheelchair, provided by an American organization.” (Samuel, Haiti)
5
Health systems strengthening Chapter 4 gave an overview of the health care, rehabilitation and assistive technology needs of people with Spinal Cord Injury (SCI), and this chapter demonstrates how health systems can respond to these needs. Currently, the health system response to people with SCI is inadequate in many countries. As a result, mortality is needlessly high. Investment in the right facilities and skills can enable people with SCI to survive, thrive and access their human rights. WHO promotes a “systems strengthening” approach to improve the performance of health systems, with consideration given to six “building blocks,” namely: leadership and governance, service delivery, human resources, health technologies, information systems, and financing (1). While this chapter addresses each component separately, it should be recognized that it is the interaction of these components – as well as coordination across other sectors such as education, employment and social welfare – that enables people with SCI to access the care they need. SCI is relevant to almost all aspects of a health system. Therefore, measures to ensure that the needs of people with SCI are met effectively have the potential to benefit not just people with disabilities but also other people using the health system. The chapter concludes with a series of recommendations that provide general guidance to countries willing to strengthen the capacity of their health systems to meet the needs of people with SCI.
Unmet needs Health care The World report on disability showed that people with disabilities seek more inpatient and outpatient care than people without disabilities, and that people with disabilities also report not receiving care more than people without disabilities (2). For example, people with disabilities have been found to receive fewer screening and preventive services such as mammograms, pap smears and tobacco advice than the general population (3, 4). Specific data on the utilization of health-care services and the unmet needs of people with SCI are often difficult to obtain, particularly in low-income 95
International Perspectives on Spinal Cord Injury
countries. However, available evidence supports the findings of the World report on disability, showing that people with SCI often have substantial and unmet needs for follow-up services (5), as well as primary care (6), once they have completed their initial rehabilitation period. For example, a cohort study carried out in Canada showed that people with SCI were more likely to have contact with the health-care system (including having higher rates of hospitalization) than the general population during the six-year follow-up period (7). A Danish register-based study, which included patients with SCI nine years after injury, found that they were being admitted to hospital 0.5 times a year, which represented three times more admissions than for a control group; the same SCI patients used general practitioners and physiotherapists six times more than the controls (8). The unmet primary care needs of people with SCI include health promotion, prevention services and medical treatment (9). In particular, information needs and concerns related to psychological, sexual and reproductive health are poorly addressed (9). A study in the Netherlands showed that people with SCI living at home had significant unmet needs for care, including information and psychosocial care (10). Participants in the Netherlands study also considered that secondary conditions associated with SCI were largely preventable. For instance, 50% of pressure sores and 25% of bladder, bowel and sexuality problems were perceived to be preventable, particularly by providing access to quality care and information, and through self-management of one’s own health and behaviour (10).
Rehabilitation Global data are also very limited on unmet needs for rehabilitation services, including assistive technology (2). National studies carried out in Malawi, Mozambique, Namibia, Zambia and Zimbabwe on the living conditions of people with disabilities, including people with SCI, 96
indicated that there were gaps in the provision of services for medical rehabilitation and assistive devices (11–15). In the absence of data on need and unmet need, research that explores consumer perspectives and experiences of rehabilitation can be helpful in providing information as to whether services are meeting the needs of people with SCI. People with SCI have reported that rehabilitation does not adequately prepare them for the transition to living in the community and that there are gaps between the skills taught in rehabilitation settings and those required in the “real world” (16, 17). The Netherlands study cited above reported that 72% of participants indicated a need for additional care, including consultation at the rehabilitation centre, re-evaluation at the rehabilitation centre, telephone consultation and home visiting (10). Assistive technology is an important issue: in low- and middle-income countries, it is estimated that only 5−15% of people with disabilities who have a need for assistive devices have access to them (18). The research in southern Africa cited above revealed that only 17−37% of people who expressed a need for assistive device services actually received them, with more men than women reporting use of assistive devices (Malawi: men 25.3%, women 14.1%; Zambia: men 15.7%, women 11.9%), and a greater percentage of urban dwellers than rural dwellers reporting use of assistive devices. People living in high-income countries may also have unmet needs for assistive technology. A national survey of people with SCI, multiple sclerosis and cerebral palsy in the USA found that more than half (56.5%) of those surveyed reported that they had needed assistive technology during the preceding year, but 28.4% of those who said they had needed it did not receive it every time it was needed (19). In a SCI study in the Netherlands, the majority of respondents (56.7%) indicated that they had problems obtaining their wheelchairs and that, in consequence, discharge from rehabilitation
Chapter 5 Health systems strengthening
centres was often delayed due to waiting times. In addition, 35.9% of people who used manual wheelchairs and 47.5% of those who used power wheelchairs had complaints about their wheelchairs. The same study also reported that, while a high proportion of respondents (78.3%) agreed that their home had the appropriate modifications, a significant proportion (38.1%) reported they did not receive all the modifications they requested (20).
Health systems strengthening Leadership and governance The Convention on the Rights of Persons with Disabilities (CRPD) states that “all people with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability” and that States Parties must undertake appropriate measures to ensure access to health services, including rehabilitation as described in both Article 25 and Article 26 of the Convention (21). The CRPD also explicitly mentions the responsibility of States Parties to ensure access to assistive technology for people with disabilities. Meeting these obligations will require national legislation, policies and strategies. However, in many low- and middle-income countries these are not in place and the provision of and access to health-care and rehabilitation services, including assistive technology, cannot be assured (2). For example, a global survey on the implementation of the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities highlighted that 50% of the 114 respondent countries had not enacted legislation relating to rehabilitation; 42% did not have rehabilitation policies in place; 48% did not have policies in place specifically relating to the provision of assistive devices; and 40% had not established rehabilitation programmes (22). Where government legislation and policies do exist, they often
impose restrictions on the type and range of care provided, which can make it difficult for people with SCI to access the care they need. Conflicting definitions of disability, eligibility criteria for assistance and complicated processes can make it difficult for people to obtain or advocate for the resources they need (23). Without appropriate legislation, policies and strategies it will be difficult to ensure that people with SCI have adequate access to health-care and rehabilitation services. Specific policies on disability (inclusive of people with SCI) should be in place, as well as ensuring that the health and rehabilitation needs of people with SCIs are addressed across other government sectors, including housing, transportation, education, recreation and leisure, employment and social welfare. Plans should also be in place in case of humanitarian disasters, such as earthquakes, which may result in a large number of traumatic SCIs and may overwhelm already weak systems (see Box 5.1). Countries need to adopt an incremental approach to building the capacity of health systems to meet the needs of people with SCI. Recognition of the needs and benefits of health care and rehabilitation for people with SCI is a critical first step. Engaging people with SCI in the planning process is also essential, as they are directly affected by policy decisions, and their views, knowledge and experience can provide invaluable insight. While governments are responsible for ensuring that policies and strategic plans are supported and implemented, a range of stakeholders – including specialist SCI centres, hospitals, professional associations, universities and national and international development agencies – can play a significant role through partnership and collaboration and by providing financial and technical support. Where countries have limited resources they can be supported through the provision of technical assistance, which may include the development of relevant guidelines, the organization of regional and country capac97
International Perspectives on Spinal Cord Injury
Box 5.1.
Organization of rehabilitation services after the Sichuan earthquake, China
In May 2008, a devastating earthquake in the Sichuan Province of China resulted in an estimated 86 000 dead or missing people, and left many more people injured and homeless. There were an estimated 200 hospital admissions with injuries to the spinal cord that required intensive medical management. After the earthquake, the Chinese Association of Rehabilitation Medicine (CARM) partnered with local government health officials and the Caring for Children Foundation (a national NGO) to organize the “NHV” approach to address the rehabilitation needs of people with SCI and other traumatic disabling injuries. This approach combined NGO funding (N), resources from local health departments (H), and commitment from professional rehabilitation volunteers (V) to provide a comprehensive continuum of services from institutional-based rehabilitation (IBR) to community-based rehabilitation (CBR). The Law of the People’s Republic of China on the Protection of Persons with Disabilities 2008 ( 24) and the CRPD (21) provided the legislative framework for the NHV model. As a result of the severely disrupted health-system infrastructure in the provincial capital of Chengdu and neighbouring areas and the overwhelming number of traumatic SCIs and other disabling injuries following the earthquake, mass evacuation of medically stable patients took place to hospitals in other parts of China (25 ). Within several months, infrastructure was sufficiently restored for most people to return directly to their homes and displacement camps, or to be transferred to hospitals in the Chengdu area for continued medical care. In anticipation of the rehabilitation needs of people returning to the community, CARM in partnership with local government health officials and the Caring for Children Foundation developed a project to provide second-stage fracture surgery and rehabilitation for people with fractures, SCI, amputations, traumatic brain injuries, and peripheral nerve injuries. An area rehabilitation needs assessment was conducted with the assistance of Handicap International and the Caring for Children Foundation to identify people who would benefit from IBR. Following piloting, IBR was implemented at the health department hospital in Mianzhu County. After discharge to the community, the emphasis shifted to CBR and in particular to its health component – promotion, prevention, medical care, rehabilitation and assistive devices. Other components of CBR were also addressed, including the livelihood, social and empowerment components, through the provision of employment services, personal assistants and peer group support. People who sustained injuries as a result of the earthquake received “fee-free” IBR along with coverage for basic living needs such as expenses for transport to the hospital. Overall, the cost–effectiveness of the NHV model was facilitated by providing IBR at nearby county hospitals as opposed to the more distant provincial hospitals. The effectiveness of the NHV model for SCI rehabilitation has been shown by Li ( 26 ) who demonstrated an average improvement of 30 points in the Barthel Index, a measure of activities of daily living, in 51 earthquake victims with SCI who were treated under NHV modalities. Medical complications were managed effectively in most patients. Moreover, Hu (27 ) showed improvements in self-reported quality of life, overall health, and satisfaction with social relationships, as well as physical independence and mobility, in 26 subjects with SCI who had been discharged to the community under the NHV model.
ity building and training workshops, and assistance for the development of national policies and programmes.
Service delivery Systems for the delivery of health-care and rehabilitation services (including assistive technology) 98
vary throughout the world. In terms of pre-hospital care, several different models exist, ranging from advanced systems of care that utilize highly skilled health personnel to volunteer-based systems that are common in areas where there are few resources. Regardless of what system is in place it is essential that pre-hospital care is integrated into the existing health-care system (28).
Chapter 5 Health systems strengthening
Acute and post-acute medical services for people with SCI are usually provided through inpatient facilities such as trauma centres, general hospitals and specialist SCI units or centres, while rehabilitation services can be provided through inpatient, outpatient and/or community settings. In high-income countries, specialized and integrated systems of care for SCI are usually the preferred option – i.e. services are provided “under one roof ” or there is an organized system that enables seamless transition between each stage of care, as discussed in Chapter 4. A policy statement released by the European Spinal Cord Injury Federation (ESCIF) advocates the centralization of treatment, rehabilitation and lifelong care for people with SCI and the development of dedicated centres that are able to manage all aspects of a person’s care (29). Early intervention through specialized centres or dedicated teams within general hospitals has been reported to result in better outcomes for people with SCI (2). A shorter length of stay in a specialist centre/unit or overseen by a dedicated team has been shown to reduce costs, lead to fewer complications, and result in fewer rehospitalizations following discharge, compared to alternative or nonspecialized services (2 , 30 –42). A study in nine countries across the world, including two developing countries, found that SCI units are usually led by a physician trained in physical and rehabilitation medicine (43). Services required in the rehabilitation phase included physiotherapy, occupational therapy,
counselling, assistive technology provision, overview of rights, and psychological and psychosexual support. Patients received between two and five hours of therapy a day, usually five days per week, although there was considerable variation in treatment time and length of stay (43, 44). The provision of assistive technology involves the design, production and distribution of products, and the delivery of relevant services such as assessment, fitting and training (45). Depending on the model of service delivery, people with SCI can acquire assistive technology through a range of different stakeholders, including government services, international agencies, NGOs, the private sector or a combination of these (public−private partnerships). Where government resources are limited, other stakeholders may play a greater role in the provision of assistive technology. National studies on the living conditions of people with disabilities in five African countries indicated that the majority of assistive devices were provided by sources outside the government, although some countries, e.g. Namibia, in this group had a much higher proportion of government-provided assistive technology than others (see Table 5.1). People with SCI, in association with their family members, need also to be empowered with bladder and bowel management and skills such as transferring, wheelchair skills and selfcare. Vocational rehabilitation, sports and cultural activities may follow.
Table 5.1. Provision of assistive technology by stakeholder Country Malawi Mozambique Namibia Zambia Zimbabwe Sources (11–15 ). Government 19% 47% 60% 14% 28% NGO 9% 4% 3% 9% 8% Private 34% 36% 30% 44% 31% Other source 38% 13% 7% 33% 33%
99
International Perspectives on Spinal Cord Injury
Barriers
People with SCI frequently encounter barriers to maintaining a healthy lifestyle and accessing health-care services. Some of those barriers are described below. Given the multiple health care needs of people with SCI, a comprehensive range of services is required. The delivery of services through specialist centres, while preferred for people with SCI, requires a substantial investment of resources, and such health-care and rehabilitation services are often centralized with limited availability in rural and remote areas (2). A study investigating factors that influence the utilization of health care by former military personnel with SCI in the USA found that distance from general health-care facilities had an impact on utilization – i.e. those who lived further away from inpatient and outpatient services used them less (46). A study carried out in rural and remote areas of Australia found that specialized services such as pain management and wheelchair seating were typically difficult to access, as were diagnostic testing and specialized equipment (47). Owing to the low incidence of SCI, it is very difficult to create sustainable specialized healthcare services in rural and remote areas (47).
Availability
plicated processes and service fragmentation have been found to be major barriers to meeting needs (5). There is rarely a “one-stop shop” to support access to assistive technology, and there are often competing interests among designers, manufacturers, suppliers, fitters and funding sources. In some countries assistive technology services may be separate from health services, making coordination difficult. In one study consumers cited that delays in service delivery, the number of organizations and officials involved, and poor treatment by professionals were contributing factors to unmet needs for assistive technology (20). In many instances people with SCI report that rehabilitation programmes do not meet their needs – i.e. they are standardized and are not tailored to individual requirements (17). For example, assistive technology is frequently “prescribed” without consideration of the individual requirements of users and their living environments. Attitudes such as “something is better than nothing” and “one size fits all” are common where resources are limited (49–51). Inadequate assessment of user needs may result in individuals being matched with inappropriate equipment (52), resulting in negative consequences. For example, where wheelchair systems are not tailored to individual need, people with SCI are at risk of secondary conditions such as pressure areas, repetitive strain injuries, and shoulder injuries (53, 54). People with SCI often have limited access to the information and support required to make informed decisions about health care and rehabilitation. Individuals may be particularly vulnerable during the early stages of their injury, as their lack of experience and knowledge can limit their insight into their own needs (55). Low user involvement may explain why a large number of wheelchairs provided in low- and middleincome countries are not appropriate for users in their environment (56, 57) or are abandoned (55).
Acceptability
Accessibility
People with disabilities often report difficulty in accessing health-care facilities. A lack of accessible and appropriate equipment may cause doctors and other health-care professionals to forego, omit or fail to consider appropriate (and otherwise routine) procedures for people with disabilities (2). A survey of physicians in the USA revealed that, although they were aware of some physical barriers in their offices, they continued to use inaccessible equipment (48). Systems for the delivery of health-care and rehabilitation (including assistive technology) services can be difficult for people with disabilities and their family members to negotiate: com100
Chapter 5 Health systems strengthening
Addressing barriers
As multiple stakeholders are involved in the delivery of services for people with SCI, a systematic and unified approach to service delivery is vital. Regardless of which type of service delivery model is in place, services should be coordinated to ensure smooth transitions between the different stages and settings of care (39, 58). Care coordination promotes a collaborative interdisciplinary team approach to service delivery, linking people with SCI to appropriate services and resources, and ensuring a more efficient and equitable distribution of the resources (2). It involves identifying a care coordinator, developing an individual care plan, and providing appropriate referral and effective information transfer to other services (2). A study involving Sweden and Greece compared similar groups of people with SCI and concluded that better outcomes were achieved with fewer complications when there was a predefined process for managing a person over the first year following traumatic SCI (59).
Coordination of services
Using alternative and complementary models for service delivery
Where dedicated specialized services for people with SCI are not possible, other models of service delivery can be considered to meet their needs. Some alternative models are outlined below. It should be emphasized that these are not standalone models; they should form part of a coordinated system of care. Smaller dedicated units or teams SCI units or teams can be set up within the framework of general hospitals. For example, a specific SCI team in Brazil and a small unit in Afghanistan were established in surgical hospitals and orthopaedic centres and supported by a home-based follow-up programme (2 , 60). In Viet Nam, the National Rehabilitation Centre partnered with Handicap International in a project to decentralize SCI services by establishing specialist units in existing rehabilitation centres.
Specialist support for mainstream health services Mobile consultation teams have been proposed as a way of supporting people with SCI who are in acute care hospitals that do not have specialist SCI units (38). These teams can assist with the prevention and management of complications associated with SCI, advise on timely referrals to rehabilitation services, assist with discharge planning, and provide education to hospital staff. SCI centres could have a role providing consultancy and education to strengthen the capacity of primary health care and social services to follow up issues affecting people with SCI living in the community (5). Outreach models Outreach models enable people with SCI to maintain contact with specialist health-care providers following discharge from tertiary centres. In these models, services are delivered closer to where people live, thus overcoming barriers such as distance and transport costs. Outpatient clinics and home visiting together with “flying clinics” (see Box 5.2) are examples of outreach models that can provide access to specialist medical and rehabilitation services for people with SCI living in rural and remote communities, and they are recognized and supported by people with SCI as alternative forms of service delivery (5). Telemedicine/telerehabilitation Information and communication technology has been used to deliver ongoing support services for people with SCI (61, 62). Teleconsultation and web-linked guidance for medical care and rehabilitation has been used for the treatment of specific SCI complications such as wound care, with suggestions that it may be an appropriate service delivery model for other areas such as bladder management (63). The use of telecommunications is also a potential solution to delivering assistive technology services in rural and remote areas (64). Community-based rehabilitation (CBR) CBR is a broad development strategy that is currently implemented in over 90 countries around 101
International Perspectives on Spinal Cord Injury
Box 5.2.
Flying clinics to East Arnhem aboriginal communities in Australia
Providing ongoing access to health-care and rehabilitation services for people with SCIs in rural and remote areas of Australia presents a significant challenge. In Australia’s Northern Territory many indigenous people who sustain an SCI are unable to return to their communities because of inadequate health-care and support services. Major spinal cord trauma and severe non-traumatic lesions are treated at one of the major SCI units in the southern part of the country – usually by the South Australian Spinal Cord Injury Service (SASCIS) in Adelaide. Medical treatment and rehabilitation for people who sustain less severe lesions of the spinal cord are provided through the Royal Darwin Hospital Rehabilitation Service (RDHRS) in Darwin in the Northern Territory. SASCIS holds several outreach clinics in Darwin and Alice Springs each year to provide follow-up for people living in the Northern Territory. For indigenous people living in areas such as East Arnhem Land, attending these clinics is often difficult, as they live in communities on islands or in remote locations from which lengthy travel via bush tracks is necessary to reach major towns. Targeted programmes are required to address the needs of people with SCI who live in the isolated communities in northern Australia. In 1994, the Territory Insurance Office Motor Accident Scheme provided funding for an SCI rehabilitation physician from Adelaide and a spinal nurse from the Northern Territory to visit two communities in East Arnhem Land (Yirrkala and Gapuwiyak). Over time the number of communities visited and people seen have increased, with up to 12 clients and seven communities per visit. Since 2002, an allied health professional (occupational therapist, physiotherapist and/or rehabilitation aboriginal liaison officer) has also accompanied the doctor and nurse, and funding has been provided by the RDHRS and the Territory Health Service. Where possible, the spinal outreach team consults with members of the Rural and Remote Allied Health team, who may be involved with individual clients, and community health staff such as doctors, nurses and aboriginal health workers. When not making a community visit, the spinal outreach team is accessible by telephone, telefax and e-mail. Costs include commercial flights between Darwin and Gove, overnight accommodation in a motel or community guest house and flights with the local charter airline. The costs compare favourably with the alternative, which is to bringing each person and designated caregiver to Darwin for a minimum of two nights. Apart from the economic benefits for the health system, there are other benefits for people with SCI, their family members and health-care workers. These include the development of a trusting relationship between the person with SCI, family members and the specialist SCI team, as well as the ability to provide opportunistic (and planned) education for the person with SCI, family members, aboriginal health workers and remote nursing and medical staff. The outreach team also gains knowledge about the difficulties and needs of people with SCI living in remote communities and about local solutions to problems, which may benefit other communities.
the world. It has the potential to increase access to health care, rehabilitation and assistive technology for people with disabilities who live in communities with few resources (65). Research from Uganda found that while the mortality of children under five with spina bifida often approaches 50%, districts with CBR programmes had a mortality rate of 16%, approaching that of non-disabled children. Survival rates are associated with parental behaviour, which can be supported and encouraged by visits from CBR workers (66). The development of partnerships between existing specialist services and CBR programmes provides an opportunity for con102
tinued and coordinated care for people with SCI. With appropriate training and supervision, CBR workers have demonstrated in many settings that they are able to provide ongoing support to people with SCI. Many CBR programmes have also supported people with SCI through peer support initiatives such as self-help groups (67).
Adopting person-driven approaches
A collaborative approach is required in which people with SCI (and their family members, where appropriate and relevant) are able to contribute to planning and decision-making (55, 68). A metasynthesis of qualitative research examining peo-
Chapter 5 Health systems strengthening
ple’s experiences of rehabilitation following SCI highlighted that they felt valued and respected when health-care workers: (i) treated them as partners throughout the rehabilitation process; (ii) had a direct and open style of communication; (iii) shared information; and (iv) included them in problem-solving and decision-making (17). Self-management approaches are critical for ensuring that people with SCI are able to maintain their health in the long-term (54). Constraints within health-care systems serve to further emphasize the importance of these approaches. People with SCI have highlighted that bowel, bladder and skin care are some of the most important topics for which they require education to facilitate self-management (54). In addition to the training and education provided by health and rehabilitation personnel, there are various ways in which people with SCI can gain knowledge and skills. The Internet can be a good source of information and may be a useful means for people with SCI to learn about their condition and to empower themselves to play an active role in their health care and rehabilitation. For instance, the New Zealand Spinal Trust has developed “Spinal Essentials,” an online interactive course designed to educate people with SCI about spinal anatomy, medical terms associated with SCI and issues that they may face (69). Research has demonstrated that people with SCI value input from their peers, whether on an informal basis such as meeting other patients during hospital admissions or on a more formal basis through peer mentoring, peer support and peer training programmes (17, 70). Peer-based programmes have the potential to improve outcomes for people with SCI and for their family members. For example, a comparative study of an SCI peer mentoring programme in the USA showed there was a decreased trend in medical complications following completion of the peer mentoring programme (71). Peer mentors have a common characteristic (i.e. SCI) and provide needed support and assistance by sharing their experiences, knowledge
and skills. Peer mentors can be used to: build confidence in people who have recently sustained an SCI; address issues related to psychosocial adjustment; provide training and education about self-care and mobility; provide information and advice about health maintenance strategies and the prevention of secondary conditions such as pressure ulcers and urinary tract infections; and initiate referrals to health-care workers where required. Peer-based training can be incorporated into the various stages of health care and rehabilitation and can be used in many different settings. NGOs, disabled people’s organizations and CBR programmes have successfully used this type of training in low-income countries. Organizations such as Motivation run peer training for wheelchair users in countries such as Malawi, Mozambique, Romania and Sri Lanka. Groups for both adults and children promote wheelchair skills, health and awareness of disability rights (72).
The CRPD (21) defines reasonable accommodation as “necessary and appropriate modification and adjustment not imposing a disproportionate or undue burden, where needed in a particular case, to ensure that persons with disabilities enjoy or exercise, on an equal basis with others, all human rights and fundamental freedoms.” Reasonable accommodations such as wide automatic doors, large examination rooms, height-adjustable examination tables, wheelchair-accessible scales, and low check-in counters would improve the physical access to health-care facilities for people with SCI.
Improving physical access to health-care facilities
Human resources People with SCI require access to a wide range of skilled personnel who are able to provide both general and specialist health-care and rehabilitation services. These personnel include medical doctors (e.g. emergency physicians, general 103
International Perspectives on Spinal Cord Injury
practitioners, neurologists, rehabilitation physicians/physiatrists, surgeons, urologists), nurses, paramedics, prosthetists and orthotists, psychologists, rehabilitation engineers, therapists (occupational therapists, physiotherapists, speech therapists), social workers and a variety of support staff, including community-based health and rehabilitation personnel. There is insufficient information to allow an adequate commentary on the global challenges relating to human resources in the area of health care and SCI. However, the global shortages of human resources for health and rehabilitation, particularly in low- and middle-income countries and in rural and remote locations (2, 65, 73, 74), would suggest that the number of personnel trained in SCI is inadequate to ensure that people with SCI can access the care they need. There are few formal training programmes for rehabilitation professionals in low- and middle-income settings. A survey of 114 countries showed that 37 had not taken action to train rehabilitation personnel (22). Where courses for rehabilitation professionals exist, curricula often fail to cover the area of SCI adequately. Anecdotal evidence suggests that, while many training programmes include SCI in their curricula, information is usually delivered through a series of lectures, less time being devoted to practical aspects of care. Lack of expertise among service providers is reported to be a significant barrier to people with disabilities receiving appropriate assistive technology (75). Rehabilitation professionals indicated in a study in Maine, USA that they had no, or only very basic, knowledge in areas related to provision of assistive technology (76). Paediatric occupational therapists reported that they had received inadequate training and technical support, and that they lacked confidence in areas relating to provision of assistive technology (75). The low incidence of SCI also means that health workers who encounter people with SCI 104
Barriers
are often inadequately trained to deal with those people’s ongoing care needs. A study carried out in Australia showed that the majority of participants perceived limited local specialist knowledge of SCI to be a major barrier to needs being met (5). Several studies have shown that the lack of knowledge about SCI among primary care physicians, who are for many people with SCI the preferred health-care provider, is a barrier to the provision of preventative and ongoing health care for SCI (48, 77–80).
Addressing barriers
Articles 4 and 26 of the CRPD highlight the obligations of States Parties to promote the training of professionals and other staff working with people with disabilities (21). To meet the needs of people with SCI, countries need to consider a range of strategies to build capacity in the health and rehabilitation workforce. These strategies include education and training, developing specialist SCI expertise within the country, using alternative methods to provide SCI expertise where it is not available locally, developing collaborative practice between health workers, improving quality and efficiency in service delivery, and introducing incentives to retain health workers in remote areas.
Establish and strengthen training programmes for rehabilitation professionals
There is a worldwide need to establish training programmes to address the significant shortage of rehabilitation personnel. Training programmes should be established at all levels, including higher education (undergraduate and postgraduate), mid-level education (certificate) and entry-level education (targeting disciplines such as community health and CBR). Training programmes for rehabilitation personnel should be reviewed in collaboration with professional associations, training providers and spinal injury societies/associations to determine the best way to integrate information on SCI, health and rehabilitation including assistive technology.
Chapter 5 Health systems strengthening
Ongoing professional development (including supervision) is needed to maintain or upgrade the knowledge and skills of existing health-care and rehabilitation personnel, and can be linked to registration and a licence to practice. In Australia a service model, whereby rural health professionals were provided with education and professional support, was found to improve their confidence in managing people with SCI (47). Various delivery modes can be used, including face-to-face, on-the-job or Internet-based training, and also telemedicine/telerehabilitation. The particular mode used will depend on the context and model of service delivery (73). While some health care needs are unique to people with SCI (e.g. autonomic dysreflexia), many other health care needs (e.g. bowel, bladder and pressure management) are also relevant to other health conditions. Consideration can be given to integrating and expanding training on issues that are relevant to a wide range of health conditions, as well as on strategies to promote collaborative practice between health-care and rehabilitation personnel (73, 81). E-learning packages, such as the one launched by the International Spinal Cord Society (ISCoS) in 2012, can help provide essential information and support for health-care and rehabilitation personnel working in the field of SCI (82). International, regional and national professional networks such as the International Network of Spinal Cord Injury Physiotherapists (SCIPT) may also help to facilitate the exchange of ideas, knowledge and resources (83). “Observerships”, an initiative of the International Spinal Cord Society Educational Committee, are designed to provide eligible health professionals with opportunities to observe management practices in SCI centres for a period ranging from three weeks to three months (84).
Support continuing professional development
lenge of providing services within shorter time frames (71). As highlighted under the section on service delivery above, peer support, mentoring, counselling and training can be helpful in providing guidance and assistance to people with SCI and can help to overcome underlying weaknesses in the health system. Many organizations, such as community-based NGOs and disabled people’s organizations, have established peer-based support programmes. Specialist SCI services have also included peer-based programmes and integrated them into medical care and rehabilitation services. Provision of training and supervision is essential to the success of programmes delivered by non-health professionals (71).
Ensure that family members receive adequate training and support
Family members can be valuable resources by, among other things, assisting people with SCIs to access care, supporting the implementation of rehabilitation programmes, and providing assistance with activities of daily living. In Nigeria an intensive 12-week programme was developed for the management of SCI. The orthopaedic hospital had limited beds and could not accommodate people for lengthy inpatient stays. Family members were trained in blocks of time to complement and overcome the lack of experienced and available personnel (85). NGOs can also provide training and support to the caregivers of people with SCI in developing countries, with a focus on health care maintenance, manual handling and challenging emotional issues (86).
Health technologies Health technologies are required across all phases of health care for people with SCIs, and they are essential for safe and effective prevention, diagnosis, treatment and rehabilitation (87). Health technologies can be broadly categorized under the following areas: emergency and essential surgical care; diagnostics and laboratory technology; diagnostic imaging; and medi105
Utilize non-health professionals to deliver services
As inpatient rehabilitation periods become shorter, rehabilitation professionals face the chal-
International Perspectives on Spinal Cord Injury
cal devices (including assistive technology). Although also discussed elsewhere, assistive technology and wheelchairs are the particular focus of this section.
Barriers
Many countries may be unable to respond to the assistive technology needs of people with SCIs due to barriers associated with production, distribution and maintenance. In many low- and middle-income countries, production and distribution of assistive technology is small-scale or in some instances non-existent (50, 88). Many countries have limited access to the materials and equipment needed to produce assistive devices. The demand for assistive technologies in developing countries may be limited due to the decreased purchasing capacity of potential users and limited awareness among the users of the existence and benefits of devices. Many countries with limited resources also rely on donations from international organizations and NGOs. This model is commonly used to supply and distribute new or refurbished wheelchairs in low-income countries. While this approach is well-intentioned and enables the distribution of a large number of wheelchairs in a cost-efficient manner, it has several limitations, as outlined below, and is unsustainable in the long term as it does not build local capacity (89). Assistive technology is not applicable across all contexts; for instance, wheelchair designs that are appropriate for people with SCI in high-income countries may not be useful for those in low-income countries (18). In addition, the level of service delivery that accompanies the donation of assistive technology may also vary between different organizations (88). Devices are also often prescribed without the provision of adequate training and support for users (56, 90), which can have a range of consequences. The abandonment or non-use of assistive technology can be an indicator of unmet needs. Rates of assistive technology abandonment have been shown to be highest during the first year 106
of use, and then again after five years of use (91). Assistive technology may be abandoned as a result of changes in the needs of users, poor device performance (in terms of effectiveness, reliability, durability, comfort, safety or ease of use), and lack of involvement of users in the selection process (91). The type of device and the level of SCI are likely to play a role in the abandonment of technology (92).
Addressing barriers
Low-cost sustainable strategies are required for the provision of appropriate assistive technologies in developing countries. The suitability of each approach will depend on the context in each country and may vary for different types of assistive technologies. Factors for consideration include input (financial and technical requirements), sustainability (the potential for established production without external input or with long-term stable external input), appropriateness (how well the technology meets the needs of the user) and impact (quantity that can be produced and delivered in a given period of time) (88). Appropriate technology requires that design features are customized to the user’s environment, needs and preferences (93). Local issues, such as rough terrain, limited access to electricity and supply of device components when a breakdown occurs, need to be considered (18, 88, 94). Several organizations have developed mobility devices for developing countries that overcome many of the local issues (72, 95). Standards can improve the quality of assistive technology, increasing the reliability of products and reducing potential risks for users (96). The International Standards Organization (ISO) has standards for manual and powered wheelchairs and scooters, and transportation standards that relate to the transportation of people in wheelchairs in buses or vans (96). However, these standards are not necessarily applicable in all contexts, and it is important to develop national standards that
Design of appropriate technology
Chapter 5 Health systems strengthening
take into account factors such as the local environment and user characteristics (18, 97).
Selection of suitable models for production and distribution
Different models for production can be used in low-income countries to increase the availability of assistive technology. For example, small-scale workshop models involve the establishment of local fabrication facilities that may increase sustainability, provide employment for local people (including people with disabilities), and offer products that can be more affordable and appropriate for the local environment (89, 98). However, such models have had varying levels of success in low-income countries, as they require significant time and financial investment to set up and sustain. In addition, they are often limited in their ability to respond to the total needs of the population (88). Some countries like India and China have the capacity to undertake production on a larger scale, supplying products at national, regional and local levels. Appropriate services are required to assist people to select, acquire and learn to use assistive technologies. Such services include: assessment and prescription; selection and fitting; user training and support on device use; follow-up to ensure safe and efficient use; and ongoing maintenance, repair and replacement. Without comprehensive services in place, users’ needs that change over time cannot be accommodated, outcomes will be compromised, and assistive devices may be abandoned (89). A study in Guatemala that evaluated the perceptions of caregivers receiving donated wheelchairs for their children with disabilities (94) showed that, while they perceived the wheelchairs to be beneficial, the caregivers noted the need to provide wheelchairs in collaboration with local services to support wheelchair use (see also Box 5.3). Publications such as the Guidelines on the provision of manual wheelchairs in less-resourced
settings provide useful information and recommendations on service delivery (18). Many lessons can also be learned from countries with comprehensive delivery systems (45). For instance, in the USA the Assistive Technology Act of 1998 funds programmes in each state to provide a range of services, including demonstration centres, loan schemes, technical assistance and outreach to rural populations (103). Demonstration centres and loan banks have the potential to increase user awareness about available assistive technology (104), as well as to improve the knowledge and skills of practitioners and support decision-making processes (104). People are able to try out assistive devices in their own environments before making decisions about whether they are suitable for their needs (91).
Health information systems As highlighted in Chapter 2, many countries lack basic information about SCI (105). Information about SCI at the individual, service and population levels is imperative to facilitate health sector planning and budgeting, to guide injury prevention and health promotion efforts, to assist with directing further research and to improve outcomes of rehabilitation (29, 106). Information should be collected at the individual, service and population levels, as follows: 1. At the level of the individual, information should include age, gender, the mechanism or cause of injury, date of injury, days hospitalized, complications, associated injuries, types of services received, treatment outcomes, neurological status, place of discharge and rehospitalizations (106 –110). 2. At the medical and rehabilitation service level, information is required on services, service outcomes, and the cost and benefit of medical and rehabilitation services at facility level (2, 65, 111). The information may include costs, human resources, facility resources (e.g. beds), type of services, frequency of service, referral and waiting 107
Comprehensive service delivery
International Perspectives on Spinal Cord Injury
Box 5.3.
Wheels of change: towards appropriate wheelchair user services in Romania
The need for appropriate wheelchair services in Romania continues to increase every year. In 2010 it was estimated that “one in every five persons who need a wheelchair does not have such equipment … Those not served are either completely immobilized, or have to fend for themselves” (99). The Motivation Romania Foundation (MRF) was established in 1995 to provide sustainable programmes to increase the quality of life of Romanians with disabilities and has supported over 9000 children and adults with mobilityrelated impairments in Romania to access a comprehensive package of services. MRF’s wheelchair programme has grown from an initial 20 wheelchair users to approximately 1000 served annually, with peer-group training in the use of appropriate mobility equipment and independent living. MRF’s wheelchairs were initially funded through donations and grants. Now, however, they are also partially funded by the National Health Insurance Agency (NHIA), which covers 16−30% of the total demand. In 2004, 2009 and 2011, funding from the United States Agency for International Development (USAID) was crucial to increasing the capacity of MRF’s wheelchair user service. The funding supported seven regional teams, each including one wheelchair technician/independent living trainer (wheelchair user) and one physiotherapist, to provide the following services:
■■ Assessment and prescription of wheelchairs: this includes personalized measurements to ensure that wheelchairs fit the individual needs of each user.
■■ Provision of wheelchairs and specialized seating: wheelchairs both with and without adaptations are provided to a wide range of wheelchair users, and special seating equipment is provided specifically to children with cerebral palsy. ■■ Independent living training: peer-led training is available for wheelchair users and includes training in wheelchair skills, personal hygiene, self-management (e.g. prevention and management of pressure ulcers and urinary tract infections), sexuality and inclusion, counselling and peer support groups. ■■ Wheelchair sports ■■ Architectural accessibility: the first national electronic resource of wheelchair-accessible buildings in Romania (100, 101). Important challenges need to be overcome before more Romanians with mobility impairments are able to access appropriate wheelchairs together with the necessary training. Romanians who need wheelchairs are entitled to receive one every five years at a basic price paid by the NHIA to certified distributors. Approval for funding can take many months and the individual needs of each user are not considered as this price does not include assessment, adaptations or wheelchair skills training. MRF has attempted to overcome these challenges in several ways, namely:
■■ The awareness of appropriate wheelchair provision has been increased among prescription specialists. In 2010, MRF introduced the WHO-ISPO-USAID Guidelines on appropriate wheelchair provision in less resourced settings. In 2011 MRF organized the first WHO training workshop for wheelchair prescription professionals and plans to expand this training countrywide to increase appropriate wheelchair provision in Romania. In 2012, MRF introduced into the Romanian Code of Occupations (COR) a new profession – that of Wheelchair Assessment, Prescriptions and Adaptations Technicians, and are working to develop an officially recognized training curriculum and course for this profession, based on the WHO wheelchair service training package (102). ■■ A wheelchair fund has been established with the help of donors to ensure appropriate provision and rapid delivery. ■■ Funds have been raised from international donors to cover the need in the medium term. By working to overcome the challenges of wheelchair provision in Romania, MRF is enabling more people with mobility impairments to access the wheelchairs they need and to develop the skills and confidence to participate in education, employment and community life. Source (101).
108
Chapter 5 Health systems strengthening
lists. All information can be used and aggregated with individual progress data both to identify the economic benefits and efficacy of services and to assist in developing priorities for health research, funding and resource allocation (112–115). There should also be periodic evaluations of the outcomes and the impact (cause and effect) of policy, programmes and medical and rehabilitation services (116). 3. At the population level, data collection can be used to determine the incidence, prevalence and etiology of SCI and to map trends. It is also important to produce information on the barriers and facilitators a person experiences in terms of legislation and policies, organizational structures, services beyond health and rehabilitation (e.g. transport), and attitudes (109, 117). Establishing regional and/or national SCI registers is important (29). Countries need to work towards developing information systems by identifying gaps in data availability and quality and by prioritizing the types of information required. To facilitate the collation and comparison of data at the international, regional and national levels, consistency is needed in the framework and terminology used (106). Chapter 2 provides details of international frameworks developed to assist health systems to collect information on SCI.
Financing and affordability Barriers People who have sustained SCI require ongoing access to medical care and rehabilitation from the time of injury. Therefore both the initial and ongoing costs associated with SCI can be significant (40, 118). These costs vary according to the context and type required (40) and cannot be generalized across settings due to differences in health system structures and funding. Chapter 2 provides further details.
People with SCI often face additional health service expenditures and out-of-pocket payments, which can place undue stress on individuals and their families (79). In general, people with disabilities experience higher rates of poverty than nondisabled people (2) and are therefore unlikely to be able to afford the costs associated with health care, rehabilitation and assistive technology. A study in Nigeria (one of the few carried out in a low-income country) reported that, for 41.1% of people with SCI participating in the study, acute treatment costs represented more than 50% of their annual income (119). In this study, “cost” took into account both direct costs (e.g. hospital charges) and indirect costs (e.g. loss of income). Where the costs of assistive technology are not covered or subsidized by third parties, products can be inaccessible for people with SCI, and particularly for those living in low- and middle-income settings (120). A study carried out among people with physical impairments (including SCI) in Uganda showed that the primary barrier to assistive devices was financial − the purchase, maintenance and replacement costs were too expensive (121). An individual with traumatic SCI who has just incurred high costs of medical and rehabilitation care may have no funds left to buy and maintain an appropriate wheelchair. Financial barriers are also relevant in highincome settings. For example in the USA almost one half of all assistive technology is obtained without the help of a third-party payer (19). Governments, NGOs or health insurance companies typically pay for, or underwrite, the provision of “medically necessary” assistive technology, but service costs and coverage limitations may restrict access to this technology (19). People with disabilities are often confronted with eligibility requirements, restrictions, paperwork, rules, regulations, and denials and refusals. This can result in inequities in the types of technology people from lower socioeconomic backgrounds are able to acquire. For example, people with SCI from low socioeconomic backgrounds were
109
International Perspectives on Spinal Cord Injury
more likely to receive standard wheelchairs than wheelchairs customized for their needs (93). Countries need to ensure adequate funds are available to finance health-care services to ensure that all people, including those with SCI, can access the services they need. Various financing options have the potential to increase the availability of health-care services for the general population, as well as for people with SCI (2). These options include: raising sufficient resources for health by increasing the efficiency of revenue collection; reprioritizing government spending; innovative fundraising; and improving the overall efficiency of the health system. Streamlined and coordinated service delivery, for instance, can minimize administrative costs, avoid duplication, and avoid delay in health care and rehabilitation, which may result in the need for protracted and more expensive health care (e.g. pressure ulcers). Strategies to improve access to assistive technology include promoting local production, reducing duty and import tax, and improving economies of scale based on established need (2). The causes of the abandonment of technology and the cost implications associated with it suggest that consideration could be given to the loan, rental or recycling of equipment during the period in which abandonment is most likely (91). Funds saved through loan or rental programmes could be used to support funding systems for long-term needs (91). In some countries national or state insurance schemes, compulsory third party insurance or voluntary donation models provide compensation for people who sustain traumatic SCI, for example as a result of road traffic injuries. In Switzerland, membership in a benefactors’ association run by the Swiss Paraplegic Foundation, requiring a small yearly donation, entitles the individual to a substantial coverage of costs in the case of a traumatic SCI. Membership is open to anyone regardless of place of residence, 110
Addressing barriers
location of accident or treatment (122). In New Zealand, the Accident Compensation Corporation provides comprehensive, no-fault personal injury cover (regardless of cause) for all New Zealand residents and visitors to New Zealand (123). It is funded through levies on people’s earnings, businesses’ payrolls, the cost of vehicle fuel and vehicle licensing fees, as well as through other government funding. As there are many causes associated with SCI, other mechanisms need to be in place to ensure that people are protected from the financial risks associated with the use of health-care and rehabilitation services. Given the high costs associated with SCI, affordable health insurance is essential to minimize the need for direct payment at the point of care. Disability insurance schemes can provide a secure and consistent pool of support for services and for people with disabilities (e.g. (124). International cooperation is needed as many developing countries may lack the resources required to establish specialist services for people with SCI. Article 32 of the CRPD highlights the need for States Parties to undertake measures with other States, together with international and regional organizations and civil society, to provide economic and technical assistance to facilitate access to health care, rehabilitation and assistive technologies (21).
Research Emerging treatments Research relating to the medical care and rehabilitation of SCI has taken place for decades and, as a result, there have been many gains that have enabled people with SCI to maintain a high quality of life and to live as long as the general population. There have been remarkable innovations in assistive technology, which have been of benefit to those people with SCI who can access them. For example, advances in wheelchair technology have meant that the needs of people with SCI are better accommodated through tilt-and-
Chapter 5 Health systems strengthening
recline mechanisms and elevating leg-rests that address postural alignment, function (including physiological functioning), spasticity, contractures, pressure management, comfort and other issues (125). The development of virtual environments and robotics (126, 127), as well as computer technology such as the use of speech or eye movements to type and the introduction of alternative keyboards (128, 129), has helped to facilitate rehabilitation and engagement in life activities. Research on the neurological control of devices has resulted in the development of prosthetic arms that people can move by thinking about what they want to do (120). Several potential treatments for SCI are beginning to emerge. Some of these treatments are still undergoing animal trials, while others are at the preclinical stage of research and some treatments that are showing potential are currently being Box 5.4.
trialled in humans (130 –133). Treatments such as stem cell therapy are highly controversial because of the scientific, safety and ethical issues involved (see Box 5.4). Despite the efforts of researchers there are currently no known treatments capable of restoring or repairing the injured spinal cord. Biomedical researchers generally share the belief that it is likely that, in the future, a combination of new treatments combined with existing medical care and rehabilitation will achieve real and significant progress towards restoring or repairing the spinal cord (133). People with SCI and their families seeking new treatments in the hope of a cure need to be aware of the complexity and uncertainty in this field. They should be encouraged to seek advice from multiple sources, including clinical experts, reputable researchers and people with SCI who might have experienced some of these treatments.
Stem-cell treatment: hope or hype?
The discovery of nervous system stem cells and rapid advances in stem cell biology have raised hope that stem-cell treatments could contribute to the reversal of severe neurological diseases, including SCI. These discoveries have also created a business opportunity for entrepreneurs in less regulated jurisdictions to sell stem-cell treatments to people with serious diseases who are desperate for recovery, which has become known as “stem-cell tourism.” Such treatments have not been thoroughly tested and evaluated in properly designed clinical trials, nor has regulatory approval been given by recognized bodies such as the United States Food and Drug Administration. Several variables have contributed to the rapid development of stem-cell tourism (134). These include the existing successful uses of stem-cell treatments for haematological diseases such as leukaemia. Thus entrepreneurs with access to clinical-grade cell-processing facilities can prepare and deliver cells for a variety of unsubstantiated indications. In addition, access to the Internet has created unprecedented advertising opportunities (135 ), and the availability of treatments in countries such as China and India has increased medical tourism (136 ). Stem-cell entrepreneurs argue that people with SCI are being denied effective treatment due to obstructive regulatory requirements, overly cautious scientists and rigid research designs, including randomization and controls (137 ). However, other than anecdotal reports, such entrepreneurs have contributed little to the vital data that must be gathered before stem cells can be used safely and effectively. Comprehensive long-term follow-up to determine the actual consequences of the treatments is often lacking. When stem-cell treatment is offered along with renewed rehabilitation, it becomes difficult to determine whether it was the stem cells or the rehabilitation that was responsible for any functional improvements. One of the first published papers critical of stem-cell tourism involved neurological examinations of people with SCI who had received fetal cells before and after direct spinal cord implantation (138). Subsequent reports from this trial by the Chinese investigators have sought to clarify which individuals can benefit from the transplantation procedure (139). Serious complications occurring after fetal stem cell transplantation have been described (140). Numerous not-for-profit and government entities issued statements describing the risks of stem-cell tourism and created educational tools for people with SCI and their families to consider before undergoing stem-cell treatment.
continues … 111
International Perspectives on Spinal Cord Injury
… continued Key consensus principles emerging include: clinical trials should never involve payment from patients or their families; treatments need to be adequately characterized; pharmacological or toxicological data need to be improved to establish reasonable evidence of safety and efficacy; and a key indicator that a stem-cell treatment is questionable is when a single treatment is advertised as having efficacy for a spectrum of diseases (141). There is a danger that legitimate stem-cell research will become discredited due to the rogue researchers who offer unsubstantiated therapies. As a result of increased government scrutiny, some stem cell clinics have been closed, including some following serious adverse events (142), while others have been fined for fraudulent advertising. Educational information is now available to advise individuals about the risks of stem-cell treatments (143), and considerable attention has been directed towards the ethical problems and difficulties with informed consent that arise in the context of therapeutic misconception (130). Attempts are underway to distinguish valid medical innovation from the unfounded application of stem cells as treatments (144, 145 ). Nevertheless, the lure of a potential cure is a powerful enticement, especially when combined with anecdotal reports of remarkable changes in patients. Thus, those with SCI may continue to purchase hope-inducing treatments (146 ) until potent scientifically validated treatments for acute and chronic SCI are a reality.
Other research
Insufficient evidence is available on the most appropriate models of service delivery for people with SCI. Further health service research is required to determine rates of access (19) and to identify cost-efficient and equitable service delivery models for improving access. Evidencebased guidelines are also needed by a wide range of stakeholders, including people with SCI, health-care personnel, governments and funding bodies. Without such guidelines, health-care personnel and others will have limited ability to make informed clinical decisions about appropriate interventions and will be unable to support people with SCIs to make informed choices about their care. In the area of assistive technology, there is currently very little empirical evidence regarding the impact on outcomes for people with SCI (147, 148). Without outcomes research in the area of assistive technology for people with SCI, it will be difficult to determine what works, how well it works, and for whom it will work.
ened to ensure that people with SCI can access the health services (including rehabilitation and assistive devices) they need. On the basis of the evidence presented in this chapter, the following recommendations should be considered. A broad range of stakeholders have roles to play and should be consulted in efforts to apply these recommendations.
Leadership and governance ■ Conduct a comprehensive situation analysis ■ to provide a baseline for sustainable national planning. Develop or revise national policies and plans in accordance with the situation analysis and the best available research evidence and best practices. Develop partnerships with other relevant sectors (e.g. education, employment, transport, social sectors) to increase the possibility of improved health outcomes for people with SCI. Engage in policy dialogues with key stakeholders to capitalize on the evidence from research and the knowledge, experience and views of people involved or affected by future policy decisions. Multilateral and bilateral donors should provide adequate financial and technical support
■
■
Conclusion and recommendations This chapter has provided a broad overview of the ways in which health systems can be strength112
■
Chapter 5 Health systems strengthening
for developing countries through sustainable and transparent international cooperation.
■ Utilize non-health professionals such as
Service delivery ■ Map existing services relevant to people with SCI, identify barriers to access and build the capacity of these services, avoiding duplication or the establishment of parallel services. ■ Ensure that appropriate systems are in place for the delivery of services for people with SCI. Where resources are adequate this should include access to specialized services. In less well-resourced settings, SCI units or teams in generalized hospitals should be developed. In all settings, systems need to be put in place to ensure a continuum of treatment for individuals when discharged to the community. ■ Establish effective communication and referral systems to ensure coordination across the three phases of care: (i) pre-hospital and acute medical care; (ii) post-acute medical care and rehabilitation; and (iii) health maintenance. ■ Engage people with SCI and their family members as partners in service delivery: provide them with information and include them in decision-making, planning, goalsetting, and monitoring and evaluation.
peers to assist in the delivery of a comprehensive range of health-care and rehabilitation services. ■ Ensure that family members, as well as people with SCI themselves, are provided with opportunities for training and support.
Health technologies ■ Establish transparent and fair eligibility guidelines to enable people with SCIs to access assistive technology. ■ Identify cost-effective models for the provision of assistive technology. ■ Ensure that assistive technology services respond to individual needs, allow choice and accommodate ageing and other changes in life situations. ■ Allow local assistive technology producers in low-income settings to contribute to national standards for health technology along with international industry groups.
Health information ■ Ensure that appropriate and standardized health information systems are in place for data collection within health services. ■ Collect and analyse data on the causes of injury, together with clinical, management and outcome data, to inform planning and decision-making for both the individual and the services.
Human resources ■ Promote access to specialist training to ensure an adequate supply of suitably trained physical and rehabilitation medicine physicians; occupational therapists; physical therapists; prosthetic and orthotic technicians, speech and language therapists, rehabilitation engineers and wheelchair personnel. ■ Strengthen existing training curricula to ensure adequate coverage of SCI and assistive technology. ■ Support opportunities for continuing professional development for both rehabilitation and mainstream health-care personnel.
Financing and affordability ■ Allocate sufficient funding for specialized ■ Ensure that appropriate pre-injury and postservices for people with SCI. injury insurance schemes can protect people against the costs of injury. ■ Ensure that people with SCI can access comprehensive and affordable health insurance.
113
International Perspectives on Spinal Cord Injury
■ Develop international partnerships to secure
technical and financial assistance to sustain services for people with SCI in the long term.
Research ■ Support the implementation of rigorous evi■ Disseminate objective information on new developments in SCI care to relevant stakedence-based research.
holders, including people with SCI and their families. ■ Conduct health systems research to determine rates of access to health-care and rehabilitation services, and to identify the most cost-effective and efficient models for service delivery. ■ Ensure that evidence-based guidelines are available and are used by health-care and rehabilitation personnel.
References De Savigny D, Adam T. Systems thinking for health systems strengthening. Geneva, World Health Organization/Alliance for Health Policy and Systems Research, 2009. 2. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf, accessed 12 April 2012). 3. Iezzoni LI et al. Mobility impairments and use of screening and preventive services. American Journal of Public Health, 2000, 90:955-961. doi: http://dx.doi.org/10.2105/AJPH.90.6.955 PMID:10846515 4. Iezzoni LI, O’Day BL. More than ramps. A guide to improving health care quality and access for people with disabilities. New York, NY, Oxford University Press, 2006. 5. Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 2001, 15:600-606. doi: http://dx.doi.org/10.1191/0269215501cr453oa PMID:11777090 6. Munce SEP et al. Physician utilization among adults with traumatic spinal cord injury in Ontario: a population-based study. Spinal Cord, 2009, 47:470-476. doi: http://dx.doi.org/10.1038/sc.2008.173 PMID:19153588 7. Dryden DM et al. Utilization of health services following spinal cord injury: a 6-year follow-up study. Spinal Cord, 2004, 42:513-525. doi: http://dx.doi.org/10.1038/sj.sc.3101629 PMID:15249928 8. Laursen B, Helweg-Larsen K. Health service use in adults 20–64 years with traumatic brain injury, spinal cord injury or pelvic fracture. A cohort study with 9-year follow-up. BMJ Open, 2012, 2:e001521. doi: http://dx.doi.org/10.1136/bmjopen-2012-001521 PMID:23103605 9. McColl MA et al. Primary care for people with SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3. Vancouver, SCIRE, 2010 (pp. 1−24) (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 10. van Loo MA et al. Care needs of persons with long-term spinal cord injury living at home in the Netherlands. Spinal Cord, 2010, 48:423-428. doi: http://dx.doi.org/10.1038/sc.2009.142 PMID:19884896 11. Eide AH et al. Living conditions among people with activity limitation in Zimbabwe: a representative regional survey. Oslo, SINTEF, 2003. 12. Eide AH, van Rooy G, Loeb ME. Living conditions among people with activity limitations in Namibia: a representative national study. Oslo, SINTEF, 2003. 13. Loeb ME, Eide AH, editors. Living conditions among people with activity limitations in Malawi: a national representative study. Oslo, SINTEF, 2004. 14. Eide A, Loeb M. Living conditions among people with activity limitations in Zambia: a national representative study. Oslo, SINTEF, 2006. 15. Eide AH, Kamaleri Y. Living conditions among people with disabilities in Mozambique: a national representative study. Oslo, SINTEF, 2009. 16. Cott CA. Client-centred rehabilitation: client perspectives. Disability and Rehabilitation, 2004, 26:1411-1422. doi: http:// dx.doi.org/10.1080/09638280400000237 PMID:15764361 17. Whalley Hammell K. Experience of rehabiltiation following spinal cord injury. Spinal Cord, 2007, 45:260-274. PMID:17310257 18. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. 19. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disability and Rehabilitation, 2003, 25:487-490. doi: http://dx.doi.org/10.1080/0963828031000071723 PMID:12745944 1.
114
Chapter 5 Health systems strengthening
20. Post MWM et al. Services for spinal cord injured: availability and satisfaction. Spinal Cord, 1997, 35:109-115. doi: http:// dx.doi.org/10.1038/sj.sc.3100362 PMID:9044519 21. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 22. South-North Centre for Dialogue and Development. Global survey of government actions on the implementation of the standard rules of the equalization of opportunities for persons with disabilities. Amman, Office of the United Nations Special Rapporteur on Disabilities, 2006:1−141. 23. Dejong G et al. The organization and financing of health services for persons with disabilities. The Milbank Quarterly, 2002, 80:261-301. doi: http://dx.doi.org/10.1111/1468-0009.t01-1-00004 PMID:12101873 24. China Disabled Persons’ Federation. Law on the Protection of Persons with Disabilities, 10 April 2008 (http://www.cdpf.org. cn/english/law/content/2008-04/10/content_84949.htm, accessed 20 May 2012). 25. Chen J et al. eds. Inter–province transfer of 10,373 patients injured in Wenchuan earthquake. Journal of Evidence-Based Medicine, 2009, 2:270-276. doi: http://dx.doi.org/10.1111/j.1756-5391.2009.01053.x PMID:21349026 26. Li Y et al. Evaluation of functional outcomes of physical rehabilitation and medical complications in spinal cord injury victims of the Sichuan earthquake. Journal of Rehabilitation Medicine, 2012, 44:534-540. doi: http://dx.doi. org/10.2340/16501977-1005 PMID:22674233 27. Hu X et al. Analysis of functional status, quality of life and community integration in earthquake survivors with spinal cord injury at hospital discharge and one-year follow-up in the community. Journal of Rehabilitation Medicine, 2012, 44:200-205. doi: http://dx.doi.org/10.2340/16501977-0944 PMID:22367060 28. WHO. Prehospital trauma care systems. Geneva, World Health Organization, 2005. 29. ESCIF. European Spinal Cord Injury Federation (ESCIF) web page. Nottwil, Switzerland, European Spinal Cord Injury Federation, 2012 (http://www.escif.org/, accessed 20 March 2012). 30. Aito S. Complications during the acute phase of traumatic spinal cord lesions. Spinal Cord, 2003, 41:629-635. doi: http:// dx.doi.org/10.1038/sj.sc.3101513 PMID:14569264 31. Bagnall AM et al. Spinal fixation surgery for acute traumatic spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (1):CD004725. PMID:18254059 32. Chappell P, Wirz S. Quality of life following spinal cord injury for 20–40 year old males living in Sri Lanka. Asia Pacific Disability Rehabilitation Journal, 2003, 14:162-178. 33. De Vivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and cause of death among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1411-1419. doi: http://dx.doi.org/10.1016/S00039993(99)90252-6 PMID:10569435 34. Burns AS, Ditunno JF. Establishing prognosis and maximising functional outcomes after spinal cord injury: a review of current and future directions in rehabilitation management. Spine, 2001, 26 Suppl:S137-S145. doi: http://dx.doi. org/10.1097/00007632-200112151-00023 PMID:11805621 35. Fromovich-Amit Y et al. Properties and outcomes of spinal rehabilitation units in four countries. Spinal Cord, 2009, 47:597603. doi: http://dx.doi.org/10.1038/sc.2008.178 PMID:19172151 36. Illis LS. The case for specialist units. Spinal Cord, 2004, 42:443-446. doi: http://dx.doi.org/10.1038/sj.sc.3101633 PMID:15197413 37. Kiekens C et al. Organisation and financing of musculoskeletal and neurological rehabilitation in Belgium: KCE reports 57S. Brussels, Belgian Health Care Knowledge Centre, 2007 (https://kce.fgov.be/sites/default/files/page_documents/ d20071023020.pdf, accessed 20 March 2012). 38. New PW. A multidisciplinary consultation team to address the unmet needs of hospitalized spinal cord injury patients. Archives of Neurology, 2010, 67:1074-1076. doi: http://dx.doi.org/10.1001/archneurol.2010.204 PMID:20837850 39. New PW. Non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? Australian Health Review, 2006, 30:353-361. doi: http://dx.doi.org/10.1071/AH060353 PMID:16879094 40. Priebe MM et al. Spinal cord injury medicine: economic and societal issues in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl 1:S84-S88. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.005 PMID:17321854 41. Scivoletto G, Morganti B, Molinari M. Early versus delayed inpatient spinal cord injury rehabilitation: an Italian study. Archives of Physical Medicine and Rehabilitation, 2005, 86:512-516. doi: http://dx.doi.org/10.1016/j.apmr.2004.05.021 PMID:15759237 42. Smith M. Efficacy of specialist versus non-specialist management of spinal cord injury within the UK. Spinal Cord, 2002, 40:10-16. doi: http://dx.doi.org/10.1038/sj.sc.3101226 PMID:11821964 43. New PW et al. International comparison of the organisation of rehabilitation services and systems of care for patients with spinal cord injury. Spinal Cord, 2012, 51:33-39. PMID:22801190
115
International Perspectives on Spinal Cord Injury
44. van Langeveld SA et al. Comparing content of therapy for people with a spinal cord injury in postacute inpatient rehabilitation in Australia, Norway, and the Netherlands. Physical Therapy, 2011, 91:210-224. doi: http://dx.doi.org/10.2522/ ptj.20090417 PMID:21212372 45. Borg J, Lindström A, Larsson S. Assistive technologies in developing countries: national and international responsibilities to implement the Convention on the Rights of Persons with Disabilities. Lancet, 2009, 374:1863-1865. doi: http://dx.doi. org/10.1016/S0140-6736(09)61872-9 PMID:19944867 46. LaVela SL et al. Geographical proximity and health care utilization in veterans with SCI&D in the USA. Social Science & Medicine, 2004, 59:2387-2399. doi: http://dx.doi.org/10.1016/j.socscimed.2004.06.033 PMID:15450711 47. Middleton JW et al. Issues and challenges for development of a sustainable service model for people with spinal cord injury living in rural regions. Archives of Physical Medicine and Rehabilitation, 2008, 89:1941-1947. doi: http://dx.doi. org/10.1016/j.apmr.2008.04.011 PMID:18929022 48. Grabois EW et al. Accessibility of primary care physicians’ offices for people with disabilities: and analysis of compliance with the Americans with Disabilities Act. Archives of Family Medicine, 1999, 8:44-51. doi: http://dx.doi.org/10.1001/archfami.8.1.44 PMID:9932071 49. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/ oti.228 PMID:17624872 50. Pearlman J et al. Lower-limb prostheses and wheelchairs in low-income countries. IEEE Engineering in Medicine and Biology Magazine, 2008, 27:12-22. doi: http://dx.doi.org/10.1109/EMB.2007.907372 PMID:18463017 51. Pearlman J et al. Design, development and testing of a low-cost electric powered wheelchair for India. Disability and Rehabilitation. Assistive Technology, 2009, 4:42-57. doi: http://dx.doi.org/10.1080/17483100802338440 PMID:19172480 52. Goodwin JS et al. Epidemiology of Medicare abuse: the example of power wheelchairs. Journal of the American Geriatrics Society, 2007, 55:221-226. doi: http://dx.doi.org/10.1111/j.1532-5415.2007.01063.x PMID:17302658 53. Bergström AL, Samuelsson K. Evaluation of manual wheelchairs by individuals with spinal cord injuries. Disability and Rehabilitation. Assistive Technology, 2006, 1:175-182. doi: http://dx.doi.org/10.1080/17483100600573230 PMID:19260185 54. May LA et al. Wheelchair back-support options: functional outcomes for persons with recent spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1146-1150. doi: http://dx.doi.org/10.1016/j.apmr.2003.08.105 PMID:15241766 55. Kittel A, Di Marco A, Stewart H. Factors influencing the decision to abandon manual wheelchairs for three individuals with a spinal cord injury. Disability and Rehabilitation, 2002, 24:106-114. doi: http://dx.doi. org/10.1080/09638280110066785 PMID:11827144 56. Mukherjee G, Samanta A. Wheelchair charity: a useless benevolence in community-based rehabilitation. Disability and Rehabilitation, 2005, 27:591-596. doi: http://dx.doi.org/10.1080/09638280400018387 PMID:16019868 57. Oderud T et al. User satisfaction survey: an assessment study on wheelchairs in Tanzania. In: Sheldon S, Jacobs NA, eds. Report of a consensus conference on wheelchairs for developing countries, Bengaluru, India, 6–11 November 2006. Copenhagen, International Society for Prosthetics and Orthotics, 2007 (pp. 112–117). 58. New PW, Simmonds F, Stevermuer T. Comparison of patients managed in specialised spinal rehabilitation units with those managed in non-specialised rehabilitation units. Spinal Cord, 2011, 49:909-916. doi: http://dx.doi.org/10.1038/ sc.2011.29 PMID:21468042 59. Divanoglou A, Seiger A, Levi R. Acute management of traumatic spinal cord injury in a Greek and a Swedish region: a prospective, population-based study. Spinal Cord, 2010, 48:477-482. doi: http://dx.doi.org/10.1038/sc.2009.160 PMID:20029396 60. Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord, 2003, 41:303-309. doi: http:// dx.doi.org/10.1038/sj.sc.3101443 PMID:12714994 61. Soopramanien A et al. Using telemedicine to provide post-discharge support for patients with spinal cord injuries. Journal of Telemedicine and Telecare, 2005, 11 Suppl 1:68-70. doi: http://dx.doi.org/10.1258/1357633054461633 PMID:16036001 62. Dallolio L et al. Functional and clinical outcomes of telemedicine in patients with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:2332-2341. doi: http://dx.doi.org/10.1016/j.apmr.2008.06.012 PMID:19061746 63. Young-Hughes S, Simbarti L. Spinal cord injury/disorder teleconsultation outcome study. Rehabilitation Nursing, 2011, 36:153-158. doi: http://dx.doi.org/10.1002/j.2048-7940.2011.tb00083.x PMID:21721396 64. Burns RB et al. Using telerehabilitation to support assistive technology. Assistive Technology, 1998, 10:126-133. doi: http:// dx.doi.org/10.1080/10400435.1998.10131970 PMID:10339280 65. WHO. Increasing access to health workers in remote and rural areas through improved retention. Geneva, World Health Organization, 2010.
116
Chapter 5 Health systems strengthening
66. Warf BC, Wright EJ, Kulkarni AV. Factors affecting survival of infants with myelomeningocele in southeastern Uganda. Journal of Neurosurgery Pediatrics, 2011, 7:127-133. doi: http://dx.doi.org/10.3171/2010.11.PEDS10428 PMID:21284456 67. WHO. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. 68. Brown-Triolo DL et al. Consumer perspectives on mobility: implications for neuroprosthesis design. Journal of Rehabilitation Research and Development, 2002, 39:659-669. PMID:17943668 69. New Zealand Spinal Trust. Resources and information. web site. Christchurch, New Zealand, New Zealand Spinal Trust, 2012 (http://www.nzspinaltrust.org.nz/library_resources_info.asp, accessed 12 April 2012). 70. Sherman JE, DeVinney DJ, Sperling KB. Social support and adjustment after spinal cord injury: influence of past peermentoring experiences and current live-in partner. Rehabilitation Psychology, 2004, 49:140-149. doi: http://dx.doi. org/10.1037/0090-5550.49.2.140 71. Ljungberg I et al. Using peer mentoring for people with spinal cord injury to enhance self efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 2011, 20:351-358. doi: http://dx.doi.org/10.1111/j.13652702.2010.03432.x PMID:21219518 72. Motivation UK. web site, Bristol, United Kingdom, Freedom through mobility, 2012 (http://www.motivation.org.uk, accessed 17 April 2012). 73. Horton R. A new epoch for health professionals’ education. Lancet, 2010, 376:1875-1877. doi: http://dx.doi.org/10.1016/ S0140-6736(10)62008-9 PMID:21112621 74. WHO. Everybody’s business: strengthening health systems to improve health outcomes. Geneva, World Health Organization, 2007. 75. Long TM et al. Training needs of pediatric occupational therapists in assistive technology. The American Journal of Occupational Therapy, 2007, 61:345-354. doi: http://dx.doi.org/10.5014/ajot.61.3.345 PMID:17569392 76. Gitlow L, Sanford T. Assistive technology education needs of allied health professionals in a rural state. Journal of Allied Health, 2003, 32:46-51. PMID:12665293 77. Bachman S et al. Provider perceptions of their capacity to offer accessible health care for people with disabilities. Journal of Disability Policy Studies, 2006, 17:130-136. doi: http://dx.doi.org/10.1177/10442073060170030101 78. Donnelly C et al. Utilization, access and satisfaction with primary care among people with spinal cord injuries: a comparison of three countries. Spinal Cord, 2007, 45:25-36. doi: http://dx.doi.org/10.1038/sj.sc.3101933 PMID:16733520 79. Neri MT, Kroll T. Understanding the consequences of access barriers to health care: experiences of adults with disabilities. Disability and Rehabilitation, 2003, 25:85-96. PMID:12554383 80. Scheer J et al. Access barriers for persons with disabilities: the consumer’s perspective. Journal of Disability Policy Studies, 2003, 13:221-230. doi: http://dx.doi.org/10.1177/104420730301300404 81. WHO. Framework for action on interprofessional education and collaborative practice. Geneva, World Health Organization, 2010. 82. eLearnSCI. Modules [web site], 2012 (http://www.elearnsci.org/, accessed 20 May 2012). 83. SCIPT. International Network of SCI Physiotherapists web site. International Network of SCI Physiotherapists, 2012 (http:// www.scipt.org/, accessed 12 April 2012). 84. ISCoS. International Spinal Cord Society web site, Aylesbury, United Kingdom, 2012 (http://www.iscos.org.uk/, accessed 20 March 2012). 85. Nwankwo OE, Katchy A. Outcome of a 12 week programme for management of the spinal cord injured with participation of patient’s relations at Hilltop Orthopaedic Hospital, Enugu, Nigeria. Spinal Cord, 2003, 41:129-133. doi: http://dx.doi. org/10.1038/sj.sc.3101410 PMID:12595877 86. Vitality. Vital change for spinal cord injury in Development Nations [web page]. London, United Kingdom, 2012 (http:// www.vitalchange.org.uk/vitality/, accessed 12 April 2012). 87. WHO. Essential health technologies [web page]. Geneva, Switzerland, WHO, 2012 (http://www.who.int/eht/en/, accessed 12 April 2012). 88. Pearlman J et al. Towards the development of an effective technology transfer model of wheelchairs to developing countries. Disability and Rehabilitation. Assistive Technology, 2006, 1:103-110. doi: http://dx.doi. org/10.1080/09638280500167563 PMID:19256173 89. Jefferds AN et al. Current state of mobility technology provision in less-resourced countries. Physical Medicine and Rehabilitation Clinics of North America, 2010, 21:221-242. doi: http://dx.doi.org/10.1016/j.pmr.2009.07.011 PMID:19951788 90. Copley J, Ziviani J. Barriers to the use of assistive technology for children with multiple disabilities. Occupational Therapy International, 2004, 11:229-243. doi: http://dx.doi.org/10.1002/oti.213 PMID:15771212 91. Phillips B, Zhao H. Predictors of assistive technology abandonment. Assistive Technology, 1993, 5:36-45. doi: http://dx.doi. org/10.1080/10400435.1993.10132205 PMID:10171664
117
International Perspectives on Spinal Cord Injury
92. Scherer MJ. Outcomes of assistive technology use on quality of life. Disability and Rehabilitation, 1996, 18:439-448. doi: http://dx.doi.org/10.3109/09638289609165907 PMID:8877302 93. Hunt PC et al. Demographic and socioeconomic factors associated with disparity in wheelchair customizability among people with traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1859-1864. doi: http:// dx.doi.org/10.1016/j.apmr.2004.07.347 PMID:15520982 94. Glumac LK et al. Guatemalan caregivers’ perceptions of receiving and using wheelchairs donated for their children. Pediatric Physical Therapy, 2009, 21:167-175. doi: http://dx.doi.org/10.1097/PEP.0b013e3181a34a2b PMID:19440126 95. Mobility without Barriers Foundation web site, Burlington, USA, Mobility without Barriers, 2012 (http://www.worldmobility.org/, accessed 17 April 2012). 96. Cooper RA et al. Advances in electric-powered wheelchairs. Topics in Spinal Cord Injury Rehabilitation, 2006, 11:15-29. doi: http://dx.doi.org/10.1310/ACUK-KFYP-ABEQ-A30C 97. Enable NSW. Guidelines for the prescription of a seated wheelchair or mobility scooter for people with a traumatic brain injury or spinal cord injury. Sydney, Enable NSW and Lifetime Care and Support Authority, 2011 (http://www.lifetimecare.nsw.gov. au//Spinal_Cord_Injury.aspx, accessed 27 February 2011). 98. Lindstrom A. Appropriate technologies for assistive devices in low-income counties. In: Hsu JD, Michael JW, Fisk JR. AAOS atlas of orthoses and assistive devices. Philadelphia, PA, Mosby Elsevier, 2008. 99. Romanian Academic Society (SAR). Imobilizat sau integrat? Statul si accesul la echipamente de mobilitate si la servicii de viata independenta. Isolated or included? The state and access to mobility equipments and independent living services. November 2010, p.1 (http://www.motivation.ro/uploads/studii%20SAR/Policy%20brief%20Imobilizat%20sau%20integrat%209%20nov%202010.pdf accessed 29 May 2012) 100. MRF. Motivation Romania Foundation. Accessibility map. web site (http://www.accesibil.org, accessed 24 April 2013). 101. MRF. Motivation Romania Foundation, 2012 web site (http://www.motivation.ro/en, accessed 24 April 2013). 102. WHO. Wheelchair service training package. Geneva, World Health Organization, 2013 (http://www.who.int/disabilities/publications/technology/wheelchair/training/en, accessed 27 April 2013). 103. Assistive Technology Act. United States Congress 2004 (Public Law 108–364) (http://www.ataporg.org/summaryact.html, accessed 2 August 2011). 104. Beck R. Enable Ireland: action on disability. Dublin, Enable Ireland, 2008 (http://www.enableireland.ie, accessed 20 April 2013). 105. Cripps RA et al. A global map for traumatic spinal cord injury epidemiology: towards a living data repository for injury prevention. Spinal Cord, 2011, 49:493-501. doi: http://dx.doi.org/10.1038/sc.2010.146 PMID:21102572 106. Biering-Sørensen F et al. The International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi. org/10.1038/sj.sc.3101930 PMID:16955072 107. Cardenas DD et al. Etiology and incidence of re-hospitalization after traumatic spinal cord injury: a multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2004, 85:1757-1763. doi: http://dx.doi.org/10.1016/j.apmr.2004.03.016 PMID:15520970 108. De Vivo M et al. International spinal cord injury core data set. Spinal Cord, 2006, 44:535-540. doi: http://dx.doi.org/10.1038/ sj.sc.3101958 PMID:16955073 109. Kreuger H. Spinal cord injury: progress in care and outcomes in the last 25 years. Vancouver, The Rick Hansen Institute, 2011. 110. Stover SL et al. History, implementation and current status of the National Spinal Cord Injury Database. Archives of Physical Medicine and Rehabilitation, 1999, 80:1365-1371. doi: http://dx.doi.org/10.1016/S0003-9993(99)90246-0 PMID:10569429 111. Bates I et al. Indicators of sustainable capacity building for health research: analysis of four African case studies. Health Research Policy and Systems, 2011, 9:14. doi: http://dx.doi.org/10.1186/1478-4505-9-14 PMID:21443780 112. Tate DG, Boninger ML, Jackson AB. Future directions for spinal cord injury research: recent developments and model systems contributions. Archives of Physical Medicine and Rehabilitation, 2011, 92:509-515. doi: http://dx.doi.org/10.1016/j. apmr.2010.07.243 PMID:21353833 113. Whiteneck G, Gassaway J. SCIRehab: a model for rehabilitation research using comprehensive person, process and outcome data. Disability and Rehabilitation, 2010, 32:1035-1042. doi: http://dx.doi.org/10.3109/09638281003775584 PMID:20392171 114. Whiteneck GG et al. Inpatient and postdischarge rehabilitation services provided in the first year after spinal cord injury: findings from the SCIRehab study. Archives of Physical Medicine and Rehabilitation, 2011, 92:361-368. doi: http://dx.doi. org/10.1016/j.apmr.2010.07.241 PMID:21353820 115. Yazdizadeh B, Majdzadeh R, Salmasian H. Systematic review of methods for evaluating healthcare research economic impact. Health Research Policy and Systems, 2010, 8:6. doi: http://dx.doi.org/10.1186/1478-4505-8-6 PMID:20196839 116. Gertler P et al. Impact evaluation in practice. Washington, DC, The International Bank for Reconstruction and Development/ The World Bank, 2011.
118
Chapter 5 Health systems strengthening
117. Whiteneck GG et al. Quantifying environmental factors: a measure of physical, attitudinal, service, productivity and policy barriers. Archives of Physical Medicine and Rehabilitation, 2004, 85:1324-1335. doi: http://dx.doi.org/10.1016/j. apmr.2003.09.027 PMID:15295760 118. Craig A et al. The efficacy and benefits of environmental control systems for the severely disabled. Medical Science Monitor, 2005, 11:RA32-RA39. PMID:15614204 119. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:1134-1137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 120. Field MJ, Jette AM. The future of disability in America. Washington, DC, The National Academies Press, 2007. 121. May-Teerink T. A survey of rehabilitative services and people coping with physical disabilities in Uganda, East Africa. International Journal of Rehabilitation Research, 1999, 22:311-316. doi: http://dx.doi.org/10.1097/00004356-19991200000008 PMID:10669981 122. Swiss Paraplegic Foundation (http://www.paraplegie.ch/en/pub/gv/become_a_member.cfm, accessed 24 April 2013). 123. ACC. Accident Compensation Corporation web site. Wellington, New Zealand, Accident Compensation Corporation, 2012 (http://www.acc.co.nz, accessed 17 April 2012). 124. NDIS. National Disability Insurance Scheme web site, Canberra, Australia, NDIS, 2012 (http://www.ndis.gov.au/, accessed 17 April 2012). 125. Dicianno BE et al. RESNA position on the application of tilt, recline, and elevating leg rests for wheelchairs. Assistive Technology, 2009, 21:13-22. doi: http://dx.doi.org/10.1080/10400430902945769 PMID:19719059 126. Crespo LM, Reinkensmeyer DJ. Effect of robotic guidance on motor learning of a timing task. Paper presented at BioRob 2008. Second IEEE, RAS & EMBS International Conference on Biomedical Robotics and Biomechatronics, 19−22 October 2008 (http://ieeexplore.ieee.org/xpl/mostRecentIssue.jsp?punumber=4753967, accessed 12 April 2012). 127. Atkins MS et al. Mobile arm supports: evidence-based benefits and criteria for use. The Journal of Spinal Cord Medicine, 2008, 31:388-393. PMID:18959356 128. Chin CA. Integrated electromyogram and eye-gaze tracking cursor control system for computer users with motor disabilities. Journal of Rehabilitation Research and Development, 2008, 45:161-174. doi: http://dx.doi.org/10.1682/ JRRD.2007.03.0050 PMID:18566935 129. Sesin A et al. Adaptive eye-gaze tracking using neural-network-based user profiles to assist people with motor disability. Journal of Rehabilitation Research and Development, 2008, 45:801-818. doi: http://dx.doi.org/10.1682/ JRRD.2007.05.0075 PMID:19009467 130. Amador MJ, Guest JD. An appraisal of ongoing experimental procedures in human spinal cord injury. Journal of Neurologic Physical Therapy; JNPT, 2005, 29:70-86. PMID:16386164 131. Fehlings MG, Baptiste D. Current status of clinical trials for acute spinal cord injury. Injury, 2005, 36 Suppl 2:B113-B122. doi: http://dx.doi.org/10.1016/j.injury.2005.06.022 PMID:15993112 132. Baptiste DC, Fehlings M. Update on the treatment of spinal cord injury. Progress in Brain Research, 2007, 161:217-233. doi: http://dx.doi.org/10.1016/S0079-6123(06)61015-7 PMID:17618980 133. Thuret S, Moon LD, Gage F. Therapeutic interventions after spinal cord injury. Nature Reviews. Neuroscience, 2006, 7:628643. doi: http://dx.doi.org/10.1038/nrn1955 PMID:16858391 134. Regenberg AC et al. Medicine on the fringe: stem cell-based interventions in advance of evidence. Stem Cells (Dayton, Ohio), 2009, 27:2312-2319. doi: http://dx.doi.org/10.1002/stem.132 PMID:19544406 135. Ryan KA et al. Tracking the rise of stem cell tourism. Regenerative Medicine, 2010, 5:27-33. doi: http://dx.doi.org/10.2217/ rme.09.70 PMID:20017692 136. Song P. Biotech pilgrims and the transnational quest for stem cell cures. Medical Anthropology, 2010, 29:384-402. doi: http://dx.doi.org/10.1080/01459740.2010.501317 PMID:21082484 137. Devereaux M, Loring JF. Growth of an industry: how U.S. scientists and clinicians have enabled stem cell tourism. The American Journal of Bioethics, 2010, 10:45-46. doi: http://dx.doi.org/10.1080/15265161003769005 PMID:20461650 138. Dobkin BH, Curt A, Guest J. Cellular transplants in China: observational study from the largest human experiment in chronic spinal cord injury. Neurorehabilitation and Neural Repair, 2006, 20:5-13. doi: http://dx.doi. org/10.1177/1545968305284675 PMID:16467274 139. Huang H et al. Influence factors for functional improvement after olfactory ensheathing cell transplantation for chronic spinal cord injury. [Chinese Journal of Reparative and Reconstructive Surgery] Zhongguo Xiu Fu Chong Jian Wai Ke Za Zhi, 2006, 20:434-438. PMID:16683451 140. Amariglio N et al. Donor-derived brain tumor following neural stem cell transplantation in an ataxia telangiectasia patient. PLoS Medicine, 2009, 6:e1000029. doi: http://dx.doi.org/10.1371/journal.pmed.1000029 PMID:19226183
119
International Perspectives on Spinal Cord Injury
141. Huang H et al. Olfactory ensheathing cells transplantation for central nervous system diseases in 1,255 patients. [Chinese Journal of Reparative and Reconstructive Surgery]Zhongguo Xiu Fu Chong Jian Wai Ke Za Zhi, 2009, 23:14-20. PMID:19192871 142. Cyranoski D. Korean deaths spark inquiry. Nature, 2010, 468:485. doi: http://dx.doi.org/10.1038/468485a PMID:21107396 143. Dolan T. A three-pronged management strategy to stem cell tourism. The American Journal of Bioethics, 2010, 10:43-45. doi: http://dx.doi.org/10.1080/15265161003754056 PMID:20461649 144. Hyun I. Allowing innovative stem cell-based therapies outside of clinical trials: ethical and policy challenges. The Journal of Law, Medicine & Ethics, 2010, 38:277-285. doi: http://dx.doi.org/10.1111/j.1748-720X.2010.00488.x PMID:20579251 145. Lindvall O, Hyun I. Medical innovation versus stem cell tourism. Science, 2009, 324:1664-1665. doi: http://dx.doi. org/10.1126/science.1171749 PMID:19556497 146. Caplan A, Levine B. Hope, hype and help: ethically assessing the growing market in stem cell therapies. The American Journal of Bioethics, 2010, 10:24-25. doi: http://dx.doi.org/10.1080/15265161.2010.481980 PMID:20461638 147. Fuhrer MJ. Assistive technology outcomes research: challenges met and yet unmet. American Journal of Physical Medicine & Rehabilitation, 2001, 80:528-535. doi: http://dx.doi.org/10.1097/00002060-200107000-00013 PMID:11421522 148. Reid D, Lailberte-Rudman D, Hebert D. Impact of wheeled seated mobility devices on adult users’ and their caregivers’ occupational performance: a critical literature review. Canadian Journal of Occupational Therapy, Revue Canadienne d’Ergothérapie, 2002, 69:261-280. doi: http://dx.doi.org/10.1177/000841740206900503 PMID:12501452
120
Chapter 6 Attitudes, relationships and adjustment
“As wheelchair users, we often prompt a certain curiosity among the non-disabled, in the sense that many wonder why a ‘normal’-looking body would be sitting on a wheelchair. Soon an opportunity is seized to start a conversation by saying: ‘Hope you get well soon!,’ followed by the question: ‘Was it an accident?’. The gazer will listen to the story of the person in the wheelchair, realize that this able-bodied-looking person in fact really cannot stand up, feel sincere sorrow and then turn around and go. As he leaves, he will be thankful that it is not him who goes through this ‘suffering.’ He will walk faster and think: ‘My biggest fear in life is to become disabled.’ Yet, that nightmare moment of the spectator might be an ordinary snapshot of the happy but not so easy life of the wheelchair user.” (Bulent, Turkey) “Their attitudes make me very miserable. It comes from their myths and beliefs. And yes my SCI happened accidentally, but for our Samoan people not all the people are educated – only 8% are educated. Everyone must work, so you are seen as ‘a waste of time’ because all you do is sit. Especially because I am the age I am – I should work hard for my family and I am not – so I must be useless. Personal care is very hard in Samoa. Your wife will be your main carer but you are lucky if you have a mother too. Without a wife or mother you would have to stay in the hospital. The family will not take you home. There is no knowledge. There is no equipment. I am lucky that my wife loves me very much.” (Pene, Samoa) “I acquired a T10 spinal cord injury when I was very young and being a wheelchair user was a natural part of my life. Growing up in a rural part of the USA, I felt comfortable with myself and had a very positive self-identity. However I was never sure if I would find a partner and often felt discouraged about not dating as much as my friends. Now, I am in a loving, stable relationship and plan to be married in the coming year. Looking back, I realize that the only limitations I truly faced are the ones I placed on myself due to a lack of self-confidence regarding dating and sexuality. As a woman with a disability, I had to be even more open, up-front, honest, and confident with men because there were many questions inherent to the process, such as: ‘How will this work?’ or ‘Can you have sex?.’ Once these questions were answered, then things proceeded naturally as they would with any relationship!” (Cheri, USA) “I received 25 hours per week with a personal assistant for different tasks. I have a few professional people (nurses) with whom I have had a good chemistry and who I can ask to accompany me when I see a trip coming up. I always plan well and put in the time for an enjoyable course of the trip, so that my assistant will have a positive experience when accompanying me. I am extremely pleased with this special type of ‘personal assistant.’” (Kjell, Norway)
6
Attitudes, relationships and adjustment The attitudes and behaviours of family members, friends, health-care providers, neighbours and strangers contribute to the environmental factors that influence the lives of people with spinal cord injury (SCI), both as barriers and as facilitators (1). At the same time, the degree to which people with SCI are able to adjust to their situation, which in turn relates to their beliefs and perceptions of themselves, can also influence the attitudes and behaviours of others in their social network (2). For many with SCI, the respect and acceptance expressed by family, friends, neighbours, colleagues and service providers – especially those social reactions that reduce anxiety and fear – are powerful positive forces that can help make adjustment to SCI possible (3). Assistance and support provided by nondisabled people, as well as peer support from other people with disabilities, represent vital help to many people with disabilities. In the Convention on the Rights of Persons with Disabilities (CRPD), Article 3 (General Principles) stresses the importance of respect for inherent dignity, individual autonomy, respect for difference, and acceptance of people with disabilities as part of human diversity and humanity (4). Specific Articles of the Convention that are relevant to a discussion of attitudes and social relationships include: ■ Article 8 Awareness-raising; ■ Article 19 Living independently and being included in the community; ■ Article 23 Respect for home and family; ■ Article 30 Participation in cultural life, recreation, leisure and sport. Other articles, such as Article 26, Habilitation and rehabilitation, highlight important enabling factors in promoting positive relationships. This chapter reviews the attitudes and relationships that structure the lives of people with SCI. The chapter discusses inclusion in the wider community as well as the attitudes of health-care professionals. It considers the provision of assistance and support − formal institutional and home care, informal unpaid care from family and friends, and consumer-controlled paid personal assistance. Next, the section on family relationships explores relationships with and support from parents, spouses and children. Finally, the chapter examines how individuals adjust to SCI and build positive self-esteem. In each section, a problem statement is followed by examples of interventions and evidence on what works to improve the situation. 123
International Perspectives on Spinal Cord Injury
Attitudes Wider community attitudes Cultural representations of and attitudes to disability influence every social interaction in the lives of people with disabilities (5). Staring, ignoring, evading, stereotyping and marginalizing are actions manifesting negative attitudes (6 –8). Attitudinal barriers can be just as inhibiting as physical barriers (9). Many nondisabled people are ignorant of the reality of life for people with disabilities. Instead, they base their attitudes on stereotypes and negative imagery (10, 11). Typically, disability is associated with dependency and passivity, though in some cultures it is associated with witchcraft, sin or negative karma (12). Even when nondisabled people avoid these prejudices, disability is still considered to be incompatible with a good quality of life; for example, the general public often views tetraplegia to be worse than death (13, 14). A Kenyan study of families with children with spina bifida revealed that only six of 40 families found their community very helpful; seven had been shunned, while nine felt that they were cursed because of the birth of a disabled child (15). In Bangladesh, even family members themselves had negative attitudes and low expectations about their relatives with disabilities (16). Attitudes of others can also be a positive force. A survey on the facilitators and barriers for people with mobility impairments in the USA indicated that the attitudes of family, friends and personal assistants had a large positive influence on recovery, while the attitudes of physicians and therapists were viewed as being barriers to receiving health care (17). However, this may differ according to the severity of injury: a Canadian study found that while about two thirds of people with SCI in excellent health identified the attitudes of their family and friends as facilitating their social participation, 25% of those in
poor health cited attitudes of family and friends as obstacles to their social participation (18). People may be unaware of what a positive attitude towards people with SCI is (19). They may assume, for instance, that people with SCI want special treatment and respond accordingly. Alternatively, they may think of independence in terms of what tasks people with SCI can perform, rather than the independence which comes from having control over one’s life. Surveys of people with SCI have found that they perceive their lives more positively than do health-care professionals and the general public (19–21). Contact with people with disabilities improves attitudes (22). In general, the more that people with SCI go to mainstream schools, travel on public transport, live in ordinary neighbourhoods and work in mainstream workplaces, the more that children and adults without disabilities will learn to understand and respect them as part of the diversity of society (23). When private homes, bars, restaurants and cultural venues are made more accessible, it becomes possible for people with disabilities to attend social gatherings and be included in mainstream leisure options, all of which will tend to improve attitudes. Targeted interventions – such as disability equality/awareness training delivered to service providers – can challenge negative attitudes and increase understanding (24, 25). Classroom interventions – such as visits from disabled role models or advocates – can improve children’s awareness and understanding (26 –28). The presence of more varied and positive disability role models in the media may also influence attitudes (29), and individual awareness-raising efforts can profit from media coverage on major events, as the example from Haiti in Box 6.1 shows. Actions by governments to promote awareness of the CRPD will tend to challenge negative attitudes to disability and promote acceptance.
Addressing barriers
124
Chapter 6 Attitudes, relationships and adjustment
Box 6.1.
Changing attitudes in Haiti
While the initial medical care required to support SCI patients after the earthquake on 10 January 2010 posed a huge task, perhaps the greatest challenge for rehabilitation in Haiti has been the issue of reintegration. In a country where people with disabilities are often called cocobai – Haitian Creole for “worthless” – SCI centres have faced significant challenges in transforming attitudes and developing successful reintegration programmes. In an ICF (International Classification of Functioning, Disability and Health) study undertaken at the Haiti Hospital Appeal (HHA) after the earthquake, nearly all patients showed severe problems in moving around using equipment and transportation. The environment had a major impact on these limitations, since the area around the hospital and existing transportation services were not wheelchair-accessible (30). However, aside from infrastructural reintegration, which has been the main focus of most recommendations, perhaps the greatest obstacle for countries such as Haiti is the cultural stigma associated with disability. Of 62 Haitian families surveyed, 45 stated they faced abuse or discrimination because of their child’s disability, 39 on a daily basis (31). Cultural and religious beliefs contribute to discrimination, since in Haiti disability is often viewed as supernatural in origin. Even crop failure can be blamed on children with disabilities (32). While national infrastructural change is generally too expensive for NGOs to implement, cost-effective advocacy efforts for achieving more rapid short-term change are attainable. HHA has launched a campaign that uses sport for the advancement of disability inclusion. The universal popularity of sport and its physical, social and economic development benefits make it an ideal tool for fostering the inclusion and well-being of people with disabilities (33). HHA’s strategy focuses on grassroots sport, and also professional Paralympic development. Leon G. lost his wife and eight of his children in the 2010 earthquake, as well as suffering an SCI. Yet, his subsequent determination to use sport to overcome disability has generated widespread attention, giving hope, courage and vision to many people in Cap-Haitien (Haiti’s second largest city) and helping to eradicate the social stigma of disability, according to Istvann Papp (Chief of the North Haiti United Nations Community Violence Reduction Team). In addition to the awareness opportunity for nondisabled spectators as Leon handcycles publicly around his district, his achievement of becoming Haiti’s first competitive handcyclist at the Parapan Games in 2011 has presented a perfect challenge to the stigma of disability. Leon has been featured on Haitian and international television, has spoken at public events, and supported the effort to have the 2012 Paralympic Games broadcast on Haitian television for the first time. His story has shown how sport can transcend linguistic, cultural and social barriers, providing an excellent platform for strategies of inclusion and adaptation in a way that more traditional forms of reintegration may struggle with (33). While physical infrastructural change is undoubtedly a critical need, a nation needs first to appreciate, understand and care for the needs of people with disabilities before it is likely to respond appropriately. Once people with disabilities are viewed as equal, it will be easier for them to achieve their human rights. Leon’s experience is just one example of how individual stories of personal sporting achievement can significantly improve relationships and attitudes.
Attitudes of health professionals Health professionals may sometimes be prejudiced against people with disabilities or may fail to treat them with respect (34). For example, one study found that 8.2% of general practitioners in south-western France felt discomfort with regard to people with physical impairments, and these attitudes were associated with less experience, lack of medical training about disability
and inadequate consultation time (35). An Australian study found that occupational therapy students’ attitudes were no better than those of business students (23). Another study found that nurses working in acute SCI care had more negative attitudes to older people with SCI than did either nurses working in SCI rehabilitation or people with SCI (36), perhaps because they always see individuals in a critical state, experiencing high dependency. This phenomenon may 125
International Perspectives on Spinal Cord Injury
also explain the negative attitudes found among emergency care providers (37) and some rehabilitation workers (19). These studies were mainly conducted in high-income countries. Less is known about the attitudes of health professionals in low- and middle-income countries (38), although analysis of the World Health Survey found that, compared with nondisabled people, people with disabilities were twice as likely to find health-care provider skills and equipment inadequate to meet their needs, three times as likely to be denied care, and four times as likely to be treated badly (39). Health-care professionals with supportive attitudes were seen by people with SCI as being central to their recovery, well-being, autonomy and hope (40). It has been found, for instance, that the positive attitudes of physicians can have more influence on patient attitudes towards their disability and rehabilitation than education of patients on their treatment options (41). Therefore it is critical to help professionals to develop positive attitudes and better understanding. Efforts to improve the attitudes of health professionals include measures such as lectures and modules on the health needs and human rights of people with disability in undergraduate training, including exposure to people with disabilities or to disabled peoples’ groups (23, 42). Workshops and participative activities may have a greater long-term impact than lectures (25). In-service training and other forms of continuing education can help influence the thinking of doctors, nurses and other professionals after they have qualified (43). Encouraging the training and recruitment of health professionals with disabilities can also challenge the prevailing stereotype that people with disabilities are always patients (44).
Assistance and support The topic of assistance and support refers to nonmedical personnel who assist people with disabilities with activities of daily living. Needs might occur in the home, in school, in the workplace, while travelling between locations, or in social and community activities. Environmental barriers generally increase the need for assistance; better accessibility and more assistive devices generally decrease the need for assistance. People who cannot obtain assistance, particularly in inaccessible settings, may be confined to the home, or even to one room in the home. Generally speaking, people with more complex needs − such as tetraplegia − will require more assistance than people with paraplegia. As demonstrated in the World report on disability (39), in general the majority of needs for assistance and support for all people with disabilities are met by family members and friends, also referred to as informal caregivers, who are unpaid. For high-income settings, or sometimes for individuals with high incomes who are living in lower income settings, paid support may be available. This may be supplied by the state, by a voluntary organization or on a commercial basis. This new and potentially very empowering phenomenon is discussed below in the section on personal assistants.
Addressing barriers
Informal care Studies of informal caregivers, typically family members, have looked at the type of tasks performed, the effects on the health of the family, and the effect on relationships (45, 46). The majority of adults with SCI are male, and their caregivers are more likely to be female. For example, one Brazilian study found that more than 80% of caregivers of people with traumatic paraplegia were female, generally wives or sometimes sisters, and more than half of the caregivers were sole caregivers (47). Another significant group of informal caregivers are the parents of children and
126
Chapter 6 Attitudes, relationships and adjustment
young people with spina bifida or acquired SCI: again, women generally perform the majority of caregiving tasks. Family and friends may feel untrained or inadequate to provide the assistance needed. Other research has found problems of isolation and lack of support for caregivers (48). Depending on the level of need, supporting an individual with SCI can be physically and emotionally demanding. This can have psychological impacts that affect the care that is provided. For example, spouses who fulfil caring roles may have more symptoms of stress and depression than their SCI partners (46). A study in the Netherlands using the Barthel Index found that the perceived burden of support in partners of people with SCI was high in nearly 24.8% of partners of people with serious disabilities, compared to 3.9% of partners of people with minor disabilities, and concluded that prevention of caregiver burn-out should be part of the care of people with SCI (49). A Brazilian study found that caregivers of people with paraplegia reported low scores on SF36 quality of life measurement, particularly for the dimensions of bodily pain and vitality (47). A study in Fiji of caregivers of people with SCI found significant caregiver burden and psychological distress (50). In Fiji, paid care support is almost non-existent, with the extended family being the main source of assistance for people with SCI. A small study of the quality of life of families with spina bifida in Kenya found pervasive social, financial, emotional and spiritual impact on parents, with these stresses being heightened when children also had urinary incontinence (15).
Addressing barriers
Social support is a key factor in the lives of adults with SCI as they return to their homes and communities after the initial period of rehabilitation has ended. Strategies and programmes are needed to provide informal personal assistance networks to people with SCI before they leave rehabilitation facilities so that they will be able to
live in the community (51). During inpatient care, not only patients but also their families should be involved in educational activities (52): needs for information on medical, psychosocial and emotional, community/integration, employment/ financial and ADL (activities of daily living)/selfcare issues were all highlighted in this Canadian study. Adaptation to SCI during the first three years after onset is improved if social and educational support is provided to family members, and not just to the person with SCI (53). A randomized controlled trial in the USA found that psychosocial interventions that targeted both the caregiver and the person with SCI were most effective in reducing health symptoms and social exclusion of caregivers (54). Family support interventions may include face-to-face problemsolving training sessions, support via telephone or video conference, and educational materials. These have been shown to improve functioning and problem-solving and, in some cases, to reduce caregiver depression (55, 56). Comprehensive support services during rehabilitation for families of children with traumatic injury have been found to be effective. This includes coordination of discharge care, education protocols, implementation of support groups, and peer support programmes for families (57). Both interventions and research are lacking for families of children with spina bifida (58). Respite care is a common solution in high-income countries where family members have caring responsibilities for children or older adults with disabilities and require a break from delivering caring tasks to reduce psychological distress (59). In less-resourced contexts, community-based rehabilitation (CBR) programmes can be an important source of support for families with disabled children (60, 61). Voluntary organizations are another source of help. Parents in Bangladesh reported benefits from meeting other parents when they attended a rehabilitation centre (16). In a Kenyan study of families having children with spina bifida, three quarters of families had been befriended by someone 127
International Perspectives on Spinal Cord Injury
from their church, and half of them knew other families with disabled children, which suggests that sources of mutual aid and support are available (15). However, geographical coverage of both NGO and CBR projects remains patchy.
Formal care Formal assistance and support services cover several different areas, including residential support services, community support, respite care and others. Formal services may be delivered by means of public or private for-profit and private not-for-profit sectors, or by a combination of these (39). Formal care can benefit both people with disabilities and informal caregivers (62 , 63). For low-income countries, however, resources may not be available for this type of service or the cost to the consumer may be too great (64). Residential provision, which has been the traditional approach to formal care in high-income countries, undermines the choice and freedom of people with disabilities to lead normal lives. Informal assistance and support have been shown to be more effective when combined with several formal care systems and services. For instance, respite care allows families to take a break from the stresses associated with informal caregiving to children with spina bifida or SCI (62). High-income countries have seen a move from residential care (65, 66) to communitybased care in recent decades. Support workers in the community allow individuals of all ages with SCI to remain in their own homes rather than enter a residential institution, a solution that is regarded as preferable by most individuals and is mandated by Article 19 of the CPRD. Community support can assist with self-care, mobility and participation, and has been associated with better health and functioning in individuals with SCI (67, 68). Home-based assistance and support is important for people who have little or no mobility. Lack of mobility is associated with 128
higher rates of medical complications and highlights the need for workers to have formal training in health-related support tasks (13, 69). When implemented correctly, it has been demonstrated that formal care in a community setting is not only cost-effective (70, 71), but can also improve the management of neuropathic bladder, reducing the risk of secondary complications associated with SCI (67) and thus improving quality of life. Collaboration with NGOs, as has happened in South Africa, for instance, is one way in which formal care can be made available to people in low- and middle-income countries (72).
Personal assistants In high-income countries, for those who have no family support or who prefer to alleviate the stress on informal caregivers by paying for assistance, or who favour greater control and flexibility, the personal assistant model is widely seen as a good solution. Personal assistance in this context refers to human help provided to individuals, under their control, so that they can perform basic activities necessary for living in the community (e.g. dressing, bathing, toileting, doing laundry, housekeeping and shopping) (73). Formal assistance and support supplied by agencies may entail strict rules on the number of hours worked and on the range of tasks that workers are allowed to perform, which may limit the ability of consumers to negotiate services outside those specifically authorized by the agency (74). In contrast, consumer-directed personal assistance programmes have been found to result in increased well-being, decreased hospitalization, and enhanced overall satisfaction of consumers (51, 74 –76). Personal assistants enable individuals with SCI to participate more in community life (77), in school, volunteering, active employment and engagement in social and recreational activities (51). The availability of a personal assistant may also influence the amount of exercise a person has. One study in the USA found that less than
Addressing barriers
Chapter 6 Attitudes, relationships and adjustment
half of manual wheelchair users met recommendations of 150 minutes moderate or strenuous physical activity per week (78). Kehn and Kroll (79) interviewed exercisers and non-exercisers with SCI about their physical activity levels and found that having a personal assistant to help with use of exercise machines and equipment was the primary reason for exercising. Barriers to widening the personal assistance model are lack of funding (80), inadequate arrangements for assessment, and the need for training of both personal assistance users and the personal assistants themselves. Employing or managing a personal assistant requires the person with disability to have the necessary skills to manage budgets and perform employer tasks, which may not be possible or desirable for all (81). Except for individuals with access to private resources, the provision of personal assistance services is usually dependent on a country’s health and social security system. However, a systematic review of evidence found that the personal assistance approach can be costeffective in high-income countries, particularly when compared to the cost of institutional care for people with high dependency needs (63). In Sweden, for instance, a personal assistance programme makes it financially possible for people with severe impairments to hire a personal assistant, either directly or through a provider, and thereby to receive support that is adapted to the individual and optimizes the person’s influence over how the support is arranged (82). Most people with SCI in low- and middleincome countries cannot afford to pay for their own assistants, and they are unlikely to receive support from the state. However, informal assistance and support can still be delivered in ways that reflect human rights values of empowerment and respect, rather than fostering dependency (83, 84). Provision of personal assistance should start with an assessment of need. For example,
Addressing barriers
in New Zealand the publicly funded Accident Compensation Corporation (ACC) National Serious Injury Service aims to encourage independent living and a return to employment by appointing a case manager to help coordinate the individual’s community requirements (85). An assessment of needed assistance hours is usually conducted by an independent ACCfunded occupational therapist, who will, following standard guidelines, consider the amount of function present in an individual with SCI and what that individual requires in a typical day. Support from disabled people’s organizations (DPOs) and other intermediary organizations may be critical in empowering people with disabilities to recruit and manage their own assistants and fulfil the role of employer (86). Consumers generally prefer to train their assistants themselves, or sometimes to have current assistants train their replacements. There may be specific needs for training on issues such as ventilator use, lifting and carrying, and other health needs such as monitoring of skin, blood pressure, respiratory infections and urinary tract infections. Personal assistance training increases the knowledge of both the consumer and the personal assistant (87) and can help reduce the occurrence of secondary conditions, which contribute to morbidity and mortality as well as increasing health care costs (88).
Family relationships The impact of support tasks is one of the factors that may make personal relationships more difficult. The discussion above focuses on the provision of tasks to support children and adults. The emotional aspect of family, however, is equally important to people with SCI. Availability of social support – particularly emotional support and problem-solving support – has been shown to be important for the life satisfaction of people with SCI in the early phase of injury (89). Feelings of dignity, pride, confidence, hope and joy in 129
International Perspectives on Spinal Cord Injury
their social interactions provide people with SCI with a firm foundation for a successful life (37, 90). These positive attitudes have been linked to the magnitude and type of support from family and friends. Family and friends can be very important in aiding recovery and taking on new life roles, although there is a risk of over-assistance (91), particularly for children with SCI. There is also evidence that, whereas social support is important, having companions who are solicitous about pain symptoms actually makes it harder for people with SCI to cope with pain (92). Several studies have found that adjustment to disability or serious chronic illness results in enhanced spiritual well-being (93, 94). Numerous studies have demonstrated strong associations between spirituality and quality of life among people with SCI (95, 96), and involvement in religion can provide social support (97, 98). People with SCI should not be seen simply as passive recipients of support, but as active and autonomous agents who consciously shape their relationships and environment by using their psychological “equipment,” – i.e. their social skills, coping skills, strengths and resources. For example, an Iranian study found that selfconfidence, religious beliefs, social networks and positive thinking were facilitators of coping (99). People with SCI not only receive but can also provide support, and providing support can be more beneficial that receiving it for the person with SCI (68).
Partners SCI can have a negative impact on relationships, and many studies find a higher risk of divorce after the injury (100 –105). However, this may be a short-term effect; one study found that more than 80.7% of married people were still married five years after their injury compared to the rate of 88.8% in the general population (106). Another study found no difference in divorce rates between people with SCI and the general population (107). A clue to this divergence 130
of results comes from research conducted in Taiwan, China, which found that traumatic SCI led either to family resilience or family breakdown (108). There may even be positive influences on relationships arising from more time spent together (109). Yet, results from these studies are difficult to compare, as the time frame after injury for divorces and separations varies, as does the definition of marriage (in some studies people who are cohabiting without being married are sometimes included and sometimes not) (110). Interpreting the varying results of the studies is even more challenging due to culture differences, changes in family life in society in general and the different methodologies used. Sexuality is an important dimension of partner relationships that is often negatively affected by SCI. For instance, studies in the United Kingdom and the Netherlands found that sexual satisfaction was frequently rated very low by a sample of people with SCI 12−18 months after discharge (111, 112). Studies of partnered men with SCI linked sexual satisfaction to factors such as partner satisfaction and relationship quality more than to biological factors such as erectile function (113, 114), although, for some people, concerns about bowel and bladder incontinence are a deterrent to sexual activity (115). Studies in Greece, India and China have found stigma and other negative beliefs to be the major obstacle to sexuality and marriage for people with SCI (116 –118). Dating was rated as one of the most difficult aspects of transition for adults with paediatric-onset SCI (119). Sexuality may not always be a problem: in a Swedish study, 84% of partners of people with SCI considered their relationship to be satisfying, and 45% considered their current sex life to be as good as or better than before injury. Feelings of emotional closeness, variety of sexual activities and mutual concerns were more important for partners than were physiological aspects (120). A study of 545 Scandinavian women with SCI found that 80% had engaged in sex after injury. Half of the women with SCI were in relationships and 85% felt their relationships were very good or rather good. However, there
Chapter 6 Attitudes, relationships and adjustment
were lower levels of activity, desire, arousal and satisfaction in women with SCI than in controls (121). Support for intimate relationships is very important to promote the well-being of people with SCI. Having a close relationship with a partner has a positive effect on quality of life (103) and well-being (122). Several studies have shown that marital status is a powerful predictor of outcome variables of independent living (100, 107, 123, 124). Good sexual adjustment after SCI is positively associated with better physical function, higher income, more participation in work and community, and higher morale (125). All members of the rehabilitation team have a role and a responsibility to address issues of sexuality with people with SCI. In the previously mentioned Scandinavian study, 61% of women had received no information about sexuality after SCI. Respondents wanted both information and support, not too soon after the injury, but when the need arose (121). Young people with disabilities should also have access to appropriate sex education (126). Programmes to improve the sexological competence of multidisciplinary teams and individual disciplines in rehabilitation have shown effectiveness (127, 128). People with SCI particularly appreciate sexuality counselling from peers (129). The key period during which sexual health interventions are important is the interval between inpatient rehabilitation and six months after discharge (130). Relationship counselling has been found effective in supporting couples in which one partner has SCI, because it can promote reciprocity and improve communication skills. Useful approaches emphasize the development of new mutually enjoyable activities (131, 132). The attitude of sharing responsibilities rather than providing care has been reported by wives as a reason for successful marriage to men with SCI (124). For those whose relationships break down after the onset of SCI, there is hopeful evidence regarding new relationships. People in post-
Addressing barriers
injury marriages have been found to be more satisfied with their living arrangements, relationships and health, and to have had improvements in their sex lives (113, 133). This may be partly because this is a subgroup of people with SCI who are more active, better adjusted and content to start with, and also because marriage further improves their quality of life (133).
Parent and sibling relationships SCI in a young person can be traumatic for the whole family. Reviews of evidence find that 12−13% of families of children with spina bifida have clinical levels of “family dysfunction” (134), and these problems are exacerbated when families come from lower socioeconomic backgrounds. One North American study found that 25% of paediatric patients, 41% of mothers and 35.6% of fathers had post-traumatic stress disorder (PTSD) (135). However, other evidence suggests that families often also show resilience, and that coping with spina bifida may even strengthen the parental marriage (134). Evidence highlights both positive and negative impacts on siblings of children with spina bifida – for instance, anxiety and concern for the health and social well-being of their disabled sibling, but also increased empathy for the disabled sibling and a greater appreciation of their own physical abilities (134). There is some evidence of anxiety and depression in siblings of disabled children, but this is by no means inevitable (136) and depends on how well the family copes with the situation (137). The disabled child should be treated as part of the family in the same way as other children. Men and women with SCI can have children (138). A Scandinavian study found that 18% of women with SCI had had children post-injury (121). Evidence shows no significant parenting differences between mothers with SCI and nondisabled mothers, nor in outcomes for children raised by mothers with SCI compared to nondisabled mothers (139, 140). Similar evidence is 131
International Perspectives on Spinal Cord Injury
available for children of fathers with SCI (141). However, there may be a need to redefine parenting roles as a result of disability (142). Children are usually comfortable with a parent’s disability, and open discussion is believed to be a key to acceptance (143). There are risks where children are expected to take up caring roles for parents or siblings with SCI, which may not be age-appropriate (144). Health-care providers should identify those families of children with SCI who are in need of psychosocial support (134). Social networks are very important for people with disabilities (145) and for the families of disabled children. A Swedish study of people who had acquired SCI in their teenage years found that parents and peers were a crucial network. Parents were advocates in interactions with health-care providers, and they were supporters, helping to deal with sorrow, frustration and anger. Peers were important in promoting activities and identity development. Health-care providers should use the patient’s own social networks effectively (146). Education of parents can influence perceptions and help them develop realistic goals for their children (16). A Kenyan study on quality of life for people with spina bifida concluded that family, caregiver and community education about the condition would contribute to improving physical, psychological and communicative development outcomes (147). Transition to adulthood is a major issue for children with spina bifida (134, 148) and has been the subject of considerable work in North America (149) based on a life-course model, which maps out developmental stages and topics that have most impact on a successful adult life (150). Parents may need education to foster independence in their children so that they can move on to participation in post-school education, independent living and employment wherever possible (148). Social groups can be helpful in assisting with leisure and friendship networks. Young people with spina bifida should be 132
Addressing barriers
encouraged to be independent (151) and to do household chores, use public transport (where accessible and available) and participate in community activities (152). To help young people with SCI in their transition to adulthood, appropriate sex education is also very important (126). With regard to nondisabled children, social workers and other supporters should help the siblings of children with spina bifida to navigate the complex emotions associated with having a brother or sister with this condition (153), and should help them develop their own strengths and resources to cope. Rehabilitation centres should consider the needs of children visiting a parent with newly acquired SCI, both to provide appropriate facilities, but also to facilitate the understanding and emotional adjustment of these children (154).
Adjustment to spinal cord injury Acquiring SCI can be a challenge to an individual’s self-esteem (155). A previously independent person may now not be in control of his or her own life, or even body, and may be dependent on help from others. Those with traumatic SCI may also have concurrent traumatic brain injury that complicates adjustment (156). Many variables have been associated with quality of life after SCI. In addition to motor impairment, experiencing secondary health complications such as incontinence, spasticity and pain is associated with lower life satisfaction (111, 112 , 122, 157, 158). Furthermore, moving around in a wheelchair may be difficult in non-adapted environments, and experiencing environmental barriers is associated with lower life satisfaction (90). Adjustment to disability is a dynamic process whereby people with SCI move towards a better fit with their environment (159). A narrative review of studies of life satisfaction of people with SCI (160) confirmed that people with SCI experience, on average, higher levels of distress and lower levels of life satis-
Chapter 6 Attitudes, relationships and adjustment
faction compared with the general population. However, there is considerable variation and most people with SCI adapt well to their condition. For example, in a Dutch study, 75% of participants experienced a decrease in life satisfaction after SCI, but one year after SCI, 50% of participants were satisfied or very satisfied with their lives (112). A review of evidence on mental health has shown that 20−30% of people with SCI show clinically significant symptoms of depression, which is substantially higher than the general population (160). Some evidence indicates that depressive symptoms reduce as time passes, although this is uncertain. Similarly, most studies show that 7−27% of people with SCI experience posttraumatic stress disorder (160). Yet this evidence proves that, despite a higher-than-average risk of mental health problems, the majority of people with SCI adjust well to their condition. Longer-term studies find good adjustment and high quality of life among people ageing with SCI (158, 161). A large study in France of tetraplegic people, for instance, found that almost three quarters of respondents rated their subjective well-being as fairly good or better (122). People with SCI who make successful adjustment, like other people with acquired disability, are those who are successful in adapting mentally to their new situation. This may include devaluing unattainable goals and altering criteria for success (155). It is this mental shift, as much as the material possibilities, which enables people to have satisfaction in life (101). Appraisal theory suggests that the way people feel about themselves depends on their cognitive response to a situation. People use different coping strategies according to their appraisal of the situation and their behavioural preferences. An integrative conceptual framework of adaptation to health problems has been described by (162), highlighting personal resources (e.g. personality, intellect), health-related factors, social and physical context (e.g. family, environment), cognitive appraisal and adaptive tasks (e.g. man-
aging symptoms, positive self-image, relating to others): each of these sets of factors is a potential target for intervention. A recent review of psychological factors associated with mental health and life satisfaction after SCI, based on 48 studies, shows that the factors consistently associated with life satisfaction or mental health are perceived control in life, sense of coherence, positive factors such as hope and purpose in life, feelings of self-worth such as self-efficacy and self-esteem, positive and negative affect, and post-traumatic cognitions (163). While the coping strategy of acceptance is a consistent determinant of adjustment, the majority of emotion-focused coping styles are not associated with life satisfaction or mental health. Although active problem-focused coping is generally considered a favourable strategy, this is not consistent in the scientific literature. It may be that where goals are blocked, as is the case with SCI, adjusting personal preferences and goals to situational change is more effective and more positively related to adjustment than trying actively to adjust life circumstances to one’s personal preferences (164).
Addressing barriers Rehabilitation Access to rehabilitation services should result in accessing appropriate assistive technologies and being able to self-manage bowel and bladder, as well as receiving other information and support, all of which represent important steps in adaptation. A small Sri Lankan study provides evidence of improved health and psychological and social outcomes for men with SCI who accessed rehabilitation (165). Since the way people view themselves is predictive of how they adjust to physical disability (166, 167), perceptions of the injured person’s body should be reworked during the process of rehabilitation to recapture positive self-esteem. Rehabilitation professionals can have a significant impact on the patient’s selfimage by, for example, providing information and creating opportunities such as group out133
International Perspectives on Spinal Cord Injury
ings, which have been reported to be beneficial in overcoming fears of being stared at (167). Evidence on psychological interventions following SCI is growing but is still incomplete. The most frequently studied intervention to reduce depressed mood in people with SCI is cognitive behavioural therapy (CBT), which incorporates a variety of techniques to facilitate emotional and behavioural change on the part of the person with SCI (104, 168). CBT can include addressing “irrational” or negative thoughts, increasing opportunities for participating in rewarding activities, and instruction in relaxation. Issues of assertiveness, social skills and sexuality have also been included. Providing CBT in a group setting can also be a cost-effective opportunity for peer support, for practice of social skills and for gaining additional viewpoints (169, 170). Coping effectiveness training (CET) may also be effective in people with SCI (171, 172), and especially in those with more severe mental health disorders at baseline. The intervention may work by changing participants’ negative appraisals of the implications of SCI and increasing their perceived manageability of its consequences, thereby improving their mood. Supportive group therapy (SGT), which emphasizes the sharing of experiences and information on topics related to injury, the exploration of emotional and cognitive reactions, and the opportunity for support and education from peers and psychologists, is also effective in reducing depression and anxiety (173). A group of positive psychological factors, including self-efficacy (belief in ability to succeed in a situation) and self-esteem (a person’s sense of self-worth or personal value), are consistently related to better quality of life. These variables may be seen as psychological resources that help people to regain their quality of life after SCI. For example, people with high selfefficacy and high self-esteem might be more likely to take personal control of their future than people with low self-efficacy, since the former have a stronger belief in their ability to influence their situation for the better. Positive 134
psychology interventions aimed at cultivating positive feelings, behaviours and thinking have shown effectiveness in other populations (174), and could be tested in people with SCI. Evidence exists for the effectiveness of multidisciplinary, multimodal interventions targeted at enhancing self-efficacy (175). General and specific self-efficacies – such as for active living – have been found to be enhanced by active/ independent living programmes (176, 177) or by physical activity or sports programmes (178– 180). Knowledge was enhanced in a multimodal intervention programme (181) and was significantly correlated with perceived control after one-year follow-up. While health professionals often recognize the importance of hope, they appear to find it problematic to balance patients’ “unrealistic” hopes with what they perceive as more “realistic” ones (182). However, from an attitudinal perspective in the initial period post-SCI, “hope for recovery” may be an effective coping mechanism in the face of an otherwise intolerable health crisis (182, 183). It may therefore be beneficial to keep the person’s hope alive as long as hope for recovery from SCI does not stand in the way of active participation in the rehabilitation programme. Screening for mental health problems in the early phase of SCI will identify those in need of psychological support. Psychological treatment for depressed people with SCI in initial hospitalization needs to be available as part of the functions of the multidisciplinary rehabilitation team. There are strong indications that psychological interventions at this stage are helpful and may prevent long-term adjustment problems (160).
Self-help groups
People with SCI usually value group learning situations in which they can meet other people who are similarly affected and thus feel less isolated (184, 185), e.g. self-help groups and other forms of peer support. Organizations such as the BackUp Trust in the United Kingdom and the Spinal Injury Trust in New Zealand offer training,
Chapter 6 Attitudes, relationships and adjustment
support and confidence-building activities such as abseiling and kayaking (see Box 6.2). In a study in France, participation in community activity and meeting friends frequently were positively associated with well-being for people with tetraplegia (122), although the direction of causality was not proven. In low- and middleincome countries, NGOs can play an important Box 6.2.
role in supporting the capacity development of social networks, regional networking platforms and consumer organizations such as those supported by Livability Ireland in South and SouthEast Asia (190). The United Kingdom NGO called Motivation runs peer group training and training-of-trainers courses in Malawi, Mozambique, Romania and other low- and middle-income
Spinal cord injury consumer organizations and networks
Consumer and advocacy organizations for and of people with SCI can be sources of invaluable peer support and advocacy. SCI consumer organizations and networks can be found in various parts of the world at national, regional and global levels, united in their efforts both politically and practically to improve living conditions and enhance participation of people with SCI. These groups may focus on single topics, such as sports activities (often with a view to recruiting elite sportsmen and women who could compete internationally), or specific demographic groups (e.g. veterans, children). They may cater to the needs of people with SCI in all major areas of life from education and employment to home modifications and peer support. SCI organizations may operate as stand-alone organizations or may be part of larger organizations or networks. In many low- and middle-income countries, such specific SCI organizations may not exist and the interests of people with SCI are promoted as part of cross-impairment disability organizations. However, SCI organizations have been established in some low-income countries, including Nepal and Uganda. In some countries, local small initiatives of former patients have evolved as a result of personal need for assistance and proper accommodation, and they have combined to create national network organizations, such as Spinal Cord Injuries Australia (SCIA), which provide accommodation and care services, employment and social service counselling. SCIA also hosts an advocacy department that works to promote inclusiveness and lobbies for specific programmes or legislative change by, for instance, submissions to government committees (e.g. on supply of health services and medical professionals in rural areas) or by providing input to policy review processes (e.g. review of the tables for the assessment of work-related impairment for disability support pension) (186 ). SCIA has in the past supported individual claims, as in the case of a taxi discrimination complaint (187 ). Regional networks can be a means of sharing experiences and success factors in implementing change and can provide support to initiatives seeking to establish national organizations. The European Spinal Cord Injury Federation (ESCIF) was founded in 2006 and represents 26 national SCI organizations throughout Europe. Its role is to share information, hold annual conferences and conduct its own research on topics such as SCI registries or the provision of specialized SCI care and rehabilitation (188). Building on these successful experiences at national and regional level, the Global Spinal Cord Injury Consumer Network (189) was started by ESCIF and the Asian Spinal Cord Network’s (ASCoN) consumer network in 2012, with the aim of bringing together existing SCI consumer groups, establishing new groups in underserved countries and regions, and expanding their activities. The main activities and plans of the Global SCI Consumer Network are to:
■■ ■■ ■■ ■■ ■■ ■■ ■■
formalize community channels (e.g. web site, news updates); link organizations and key people to support and promote local initiatives; generate funding and other support for the activities of the global network; appoint SCI “ambassadors” throughout the world; organize a corps of SCI volunteers to assist SCI groups in other countries/world regions; organize global SCI consumer network meetings; in the long run, formalize the network as a global federation or organization.
135
International Perspectives on Spinal Cord Injury
countries, with the aim of creating a network of skilled peer counsellors and trainers who can help recently paralysed people adjust to their new situation (191). The disabled people’s movement has helped many people with disabilities to develop their friendship networks and even to meet partners (192 , 193). SCI consumer organizations and networks play an important role beyond providing valuable guidance and services in the form of advocacy, sports, employment and accommodation support (see Box 6.3). However, evidence from a study of French people with tetraplegia found that, while 56% of respondents felt that disabled people constituted a community, only
a third of them felt that they belonged to the community (194). Women in particular were less likely to be involved. It was those who were more socially excluded and who often experienced worse symptoms who expressed a sense of belonging to disability networks (194).
Physical activity and sport
Regular physical activity can have substantial social benefits, providing a means of establishing new friendships, sharing experiences, developing social support networks, and improving overall functioning (195, 196). Participation in sports has been reported to re-establish contact with the world at large by aiding community
Box 6.3.
Peer support in Sri Lanka
The Spinal Injuries Association (SIA) of Sri Lanka was started by individuals with SCI and has implemented many useful programmes in addition to peer group training. On a monthly basis, members of SIA visit the general hospital and meet with people who have recently incurred SCI. They serve as role models and help newly injured individuals to overcome the initial shock of their trauma, giving them information and demonstrating that it is possible to live a useful life even with SCI. Anecdotal reports indicate that this peer counselling has helped many individuals who had given up hope, thinking that their life ended after paralysis due to SCI. As noted in the following testimony, this programme appears to be successful and may serve as a model for others wishing to adopt and further develop peer counselling programmes. “I had a motor traffic accident in September 1980 and sustained a SCI at the T4 level. After treatment for wounds in a general hospital for three months I was transferred to the only hospital available at that time for rehabilitation of people with SCI, the Ragama Rehabilitation Hospital. I was shown by another patient in the hospital how to make an improvised condom catheter which I started using after giving up the indwelling catheter that had been provided previously. For bowel movements you just sat on the commode and hoped for the best. I had small wounds on the buttock which were a nuisance. My life changed in 1998. Motivation United Kingdom set up an office in Sri Lanka to train the nurses in the rehabilitation hospital how to manage patients with SCI and to set up a wheelchair manufacturing workshop. They also conducted a training programme for peer group trainers, which I attended. The five-day training programme included lessons on what SCI is, the prevention of pressure sores, the importance of using a good wheelchair cushion, bowel control, bladder management, skin care, sexuality, wheelchair skills, wheelchair maintenance and other topics. Here I learned digital stimulation and manual evacuation of stools to manage the bowel. Earlier I had a lot of anxiety when travelling due to uncertainty regarding my bowel movements. After the training I changed the wheelchair cushion I had been using and this prevented pressure sores. The fact that the training was given by another person with SCI had a big impact. Following the training, my activities of daily living became so much easier. I felt at ease and confident when travelling both locally and overseas. Later the Spinal Injuries Association of Sri Lanka (SIA) continued with peer group training and it was satisfying to see the improvement in the quality of life of people with SCI who underwent training.” Cyril, Sri Lanka
136
Chapter 6 Attitudes, relationships and adjustment
integration and improving family relationships (197–199). A meta-analysis found a small- to medium-sized positive association between physical activity and subjective well-being (200). A review of literature has revealed psychological as well as physiological benefits of participation in recreation and physical activity (201), such as increased social interaction. Research in the USA shows that people with SCI involved in sports score higher in physical independence, mobility, occupation and social integration than non-athletes (197), with psychological benefits particularly evident for those engaged in team sports (202). A German study found that individuals who were actively involved in sport had a higher employment rate and better quality of life (203). People other than therapists tend to be the source of the motivation to become involved in sports (204). Specialized equipment allows people with SCI to practice a wide range of sports (205 –207). In recent years low-cost wheelchairs for basketball and tennis have become available for developing countries (208).
Provision of appropriate services, both during rehabilitation and for subsequent community living, can facilitate adjustment and improved quality of life for people with SCI. Adequate information and psychological support are particularly important. While needs for assistance are generally met by relatives, provision of home care, respite care and personal assistance can liberate individuals with SCI and their family members. Participation in sporting, cultural and spiritual activities can increase selfconfidence and improve well-being. The following recommendations show specific ways forward.
Provide support Support children and adults with SCI to achieve positive self-esteem and adjustment by, for instance: ■ providing access to counselling and information in rehabilitation settings and in the wider community, including sexuality information; ■ supporting development of peer networks and self-help organizations; ■ helping people access sporting, religious, cultural, political and leisure opportunities, as well as education and employment. Support family members and caregivers of people with disabilities by providing: ■ counselling, information and advice for family members and caregivers; ■ opportunities to meet other people in similar situations by, for example, supporting the development of self-help groups; ■ marriage guidance, counselling and other interventions for couples affected by disability, including information and advice about intimate relationships; ■ emotional and social support for siblings of children with spina bifida and SCI, including services at the transition to adulthood;
Conclusion and recommendations People with disabilities commonly rate their own quality of life higher than nondisabled people rate the quality of life of disabled people (20, 147). Feelings of dignity, pride, confidence, hope and joy in social interactions provide a person with SCI with a firm foundation for a successful life (37, 90). These positive attitudes have been linked to the magnitude and type of support from family and friends. Interventions to challenge negative attitudes towards people with SCI and other disabilities should be a priority, as mandated by Article 8 of the CRPD. In particular, health professionals and other service providers should receive training to ensure that they treat people with SCI and other disabilities with respect and dignity.
137
International Perspectives on Spinal Cord Injury
■ respite care and other support for families of children with spina bifida and SCI where necessary and appropriate.
■ ensuring that human rights issues related
Develop assistance services Where possible, support the development of personal assistance services by: ■ developing community care contracting and assessment procedures in support of consumer-directed care schemes; ■ developing legal and financial frameworks to enable direct payments for personal assistance; ■ empowering people with SCI and other disabilities to use personal assistance by, for instance, fostering infrastructure organizations that can support personal assistance users.
to disability are included in undergraduate curricula for teachers, doctors and professions allied to medicine; ■ providing disability equality training to staff with customer care responsibilities, such as in transport, social and housing services; ■ supporting public awareness, information and education initiatives that challenge negative attitudes to disability through, for example, schools and the media.
Foster research Increase the evidence base for interventions by fostering research on topics such as: ■ effective interventions to challenge negative attitudes to disability; ■ cost-effectiveness and consumer satisfaction of consumer-directed care schemes; ■ effectiveness of psychological interventions to support adjustment to SCI; ■ the role of interventions such as sports, social media and self-help groups in supporting people with SCI to develop positive self-esteem and to form relationships.
Change attitudes Help to ensure that professionals, other key service providers and members of the general public develop positive attitudes to disability by:
References Chan F, Da Silva Cardoso E, Chronister, J.A. eds. Understanding psychosocial adjustment to chronic illness and disability: a handbook for evidence-based practitioners in rehabilitation. New York, NY, Springer Publishing 2009. 2. Boswell BB, Dawson M, Heininger E. Quality of life defined by adults with spinal cord injuries. Journal of Rehabilitation, 1998, 64:27-32. 3. Hampton NZ, Qin-Hilliard DB. Dimensions of quality of life for Chinese adults with spinal cord injury: a qualitative study. Disability and Rehabilitation, 2004, 26:203-212. doi: http://dx.doi.org/10.1080/09638280310001639704 PMID:15164954 4. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 5. Stiker HJ. Corps Infirmes et Sociétés. Paris, Dunod, 1997. 6. Weinberg N. Another perspective: attitudes of people with disabilities. In: Yuker HE, ed. Attitudes toward persons with disabilities. New York, NY, Springer, 1988 (pp. 141–153). 7. Wright B. Attitudes and the fundamental negative bias: conditions and corrections. In: Yuker HE, ed. Attitudes toward persons with disabilities. New York, NY, Springer, 1988 (pp. 3–21). 8. Garland-Thomson R. Staring: how we look. Oxford, Oxford University Press, 2009. 9. Reeve D. Psycho-emotional disablism: the missing link? In: Watson N, Roulstone A, Thomas C, eds. Routledge handbook of disability studies. Routledge, London, 2012. 10. Gallois C. Communicating disability: stereotypes, identity and motivation. In: Ng SH, Canddlin CN, Chiu CY, eds. Language matters: communication, identity and culture. Hong Kong, City University of Hong Kong Press, 2004. 1.
138
Chapter 6 Attitudes, relationships and adjustment
11. Reinhardt JD et al. Visual perception and appraisal of persons with impairments: a randomised controlled field experiment using photo elicitation. Disability and Rehabilitation, 2011, 33:441-452. Epub 2010 Jul 23 doi: http://dx.doi.org/10.3109/0963 8288.2010.500344 PMID:20653364 12. Ingstad B, Whyte SR, editors. Disability and culture. Berkeley, CA, University of California Press, 1995. 13. Murray TA. Switching from hospital-based practice to home care. Home Care Provider, 1996, 1:79-82. doi: http://dx.doi. org/10.1016/S1084-628X(96)90233-6 PMID:9157912 14. Naami A, Havashi R. Perceptions about disability among Ghanaian university students. Journal of Social Work in Disability & Rehabilitation, 2012, 11:100-111. doi: http://dx.doi.org/10.1080/1536710X.2012.677616 PMID:22630599 15. van’t Veer T et al. Quality of life for families with spina bifida in Kenya. Tropical Doctor, 2008, 38:160-162. doi: http://dx.doi. org/10.1258/td.2007.070053 PMID:18628544 16. Maloni PK et al. Perceptions of disability among mothers of children with disability in Bangladesh: implications for rehabilitation service delivery. Disability and Rehabilitation, 2010, 32:845-854. doi: http://dx.doi. org/10.3109/09638280903326063 PMID:20131951 17. Gray DB et al. A subjective measure of environmental facilitators and barriers to participation for people with mobility limitations. Disability and Rehabilitation, 2008, 30:434-457. doi: http://dx.doi.org/10.1080/09638280701625377 PMID:17943511 18. Noreau L, Fougeyrollas P, Boschen KA. Perceived influence of the environment on social participation among individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2002, 7:56-72. doi: http://dx.doi.org/10.1310/1UGA-EY2T-N6XP-1PHE 19. Lys K, Pernice R. Perceptions of positive attitudes towards people with spinal cord injury. International Journal of Rehabilitation Research, 1995, 18:35-43. doi: http://dx.doi.org/10.1097/00004356-199501000-00004 PMID:7797318 20. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Social Science & Medicine, 1999, 48:977-988. doi: http://dx.doi.org/10.1016/S0277-9536(98)00411-0 PMID:10390038 21. Amundson R. Quality of life, disability, and hedonic psychology. Journal for the Theory of Social Behaviour, 2010, 40:374-392. doi: http://dx.doi.org/10.1111/j.1468-5914.2010.00437.x 22. Hernandez B et al. Construction and validation of the Disability Rights Attitude Scale: assessing attitudes toward the Americans with Disabilities Act (ADA). Rehabilitation Psychology, 1998, 43:203-218. doi: http://dx.doi. org/10.1037/0090-5550.43.3.203 23. Lyons M. Enabling or disabling? Students’ attitudes towards people with disabilities. The American Journal of Occupational Therapy., 1991, 45:311-316. 24. Peterson PA, Quarstein VA. Disability awareness training for disability professionals. Disability and Rehabilitation, 2001, 23:43-48. doi: http://dx.doi.org/10.1080/09638280150211293 PMID:11213323 25. Saketkoo L et al. Effects of a disability awareness and skills training workshop on senior medical students as assessed with self ratings and performance on a standardized patient case. Teaching and Learning in Medicine, 2004, 16:345-354. doi: http://dx.doi.org/10.1207/s15328015tlm1604_7 PMID:15582871 26. Ison N et al. “Just like you”: a disability awareness programme for children that enhanced knowledge, attitudes and acceptance: pilot study findings. Developmental Neurorehabilitation, 2010, 13:360-368. doi: http://dx.doi.org/10.3109/1751 8423.2010.496764 PMID:20828333 27. Rillotta F, Nettelbeck T. Effects of an awareness program on attitudes of students without an intellectual disability towards persons with an intellectual disability. Journal of Intellectual & Developmental Disability, 2007, 32:19-27. doi: http://dx.doi. org/10.1080/13668250701194042 PMID:17365364 28. Lindsay S, Edwards A. A systematic review of disability awareness interventions for children and youth. Disability and Rehabilitation, 2012,epub ahead of print PMID:22831703 29. Pointon A, Davies C. Framed: interrogating disability in the media. London, British Film Institute publications, 2008. 30. Rauch A et al. Rehabilitation needs assessment in persons with spinal cord injury following the 2010 earthquake in Haiti: a pilot study using an ICF-based tool. Journal of Rehabilitation Medicine, 2011, 43:969-975. doi: http://dx.doi. org/10.2340/16501977-0896 PMID:22031341 31. Hill R. Haiti Hospital Appeal Community Based Rehabilitation Pilot Survey –The effect of disability within families in Northern Haiti 2011. Haiti Hospital Appeal, 2011.Unpublished. 32. Phillips C. Reaching the “cocobai”: reconstruction and persons with disabilities in Haiti. Policy paper. Ottawa, FOCAL Canadian Foundation for the Americas, 2011. 33. United Nations. (UN) Panel discussion on sports for inclusive development: sports,disability and development: key to empowerment of persons with disabilities and their communities. New York, United Nations, 2011 (http://www.un.org/ disabilities/default.asp?id=1574/, accessed 29.5.2012)
139
International Perspectives on Spinal Cord Injury
34. Smith DL. Disparities in patient–physician communication for persons with a disability from the 2006 Medical Expenditure Panel Survey (MEPS). Disability and Health Journal, 2009, 2:206-215. doi: http://dx.doi.org/10.1016/j. dhjo.2009.06.002 PMID:21122761 35. Aulagnier M et al. General practitioners’ attitudes towards patients with disabilities: the need for training and support. Disability and Rehabilitation, 2005, 27:1343-1352. doi: http://dx.doi.org/10.1080/09638280500164107 PMID:16321918 36. Furlan JC et al. Attitudes towards the older patients with spinal cord injury among registered nurses: a cross-sectional observational study. Spinal Cord, 2009, 47:674-680. doi: http://dx.doi.org/10.1038/sc.2009.23 PMID:19365396 37. Gerhart KA et al. Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Annals of Emergency Medicine, 1994, 23:807-812. doi: http://dx.doi.org/10.1016/S0196-0644(94)70318-3 PMID:8161051 38. Dorji S, Solomon P. Attitudes of health professionals toward persons with disabilities in Bhutan. Asia Pacific Disability Rehabilitation Journal, 2009, 20:32-42. 39. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf, accessed 10 May 2012). 40. Lucke KT. Knowledge acquisition and decision-making: spinal cord injured individuals perceptions of caring during rehabilitation. SCI Nursing, 1997, 14:87-95. PMID:9355615 41. Bach CA, McDaniel RW. Quality of life in quadriplegic adults: a focus group study. Rehabilitation Nursing, 1993, 18:364-367. doi: http://dx.doi.org/10.1002/j.2048-7940.1993.tb00790.x PMID:7938891 42. Eddey GE, Robey KL. Considering the culture of disability in cultural competence education. Academic Medicine, 2005, 80:706-712. doi: http://dx.doi.org/10.1097/00001888-200507000-00019 PMID:15980092 43. Shakespeare T, Iezzoni LI, Groce NE. Disability and the training of health professionals. Lancet, 2009, 374:1815-1816. doi: http://dx.doi.org/10.1016/S0140-6736(09)62050-X PMID:19957403 44. Spain R. In practice from the point of view of a disabled nurse. In: Swain J, French S, eds. Disability on equal terms. London, Sage, 2008. 45. Baum CM, Gray DB. The family and rehabilitation services: minimizing the impact on personal relationships. In: McColl M, Bickenbach J, eds. Introduction to disability. London, Saunders, 1998: 167–173. 46. Weitzenkamp DA et al. Spouses of spinal cord injury survivors, the added impact of caregiving. Archives of Physical Medicine and Rehabilitation, 1997, 78:822-827. doi: http://dx.doi.org/10.1016/S0003-9993(97)90194-5 PMID:9344300 47. Blanes L, Carmagnani MI, Ferreira LM. Health-related quality of life of primary caregivers of persons with paraplegia. Spinal Cord, 2007, 45:399-403. doi: http://dx.doi.org/10.1038/sj.sc.3102038 PMID:17310256 48. de Azevedo GR, Santos VL. Handicapped caregiver: the social representations of family members about the caregiving process. Revista Latino-Americana de Enfermagem, 2006, 14:770-780. doi: http://dx.doi.org/10.1590/S010411692006000500020 PMID:17117264 49. Post MW, Bloemen J, de Witte LP. Burden of support for partners of persons with spinal cord injuries. Spinal Cord, 2005, 43:311-319. doi: http://dx.doi.org/10.1038/sj.sc.3101704 PMID:15685263 50. Gajraj-Singh P. Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord, 2011, 49:928-934. doi: http://dx.doi.org/10.1038/sc.2011.15 PMID:21383762 51. Hagglund KJ et al. A comparison of consumer-directed and agency-directed personal assistance services programmes. Disability and Rehabilitation, 2004, 26:518-527. doi: http://dx.doi.org/10.1080/09638280410001672472 PMID:15204459 52. McLennan M et al. Rehabilitation learning needs: patient and family perceptions. Patient Education and Counseling, 1996, 27:191-199. doi: http://dx.doi.org/10.1016/0738-3991(95)00799-7 PMID:8788349 53. DeSanto-Madeya S. Adaptation to spinal cord injury for families post-injury. Nursing Science Quarterly, 2009, 22:57-66. doi: http://dx.doi.org/10.1177/0894318408327295 PMID:19176861 54. Schulz R et al. Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology, 2009, 54:1-15. doi: http://dx.doi.org/10.1037/a0014932 PMID:19618698 55. Elliott TR et al. Problem-solving training via videoconferencing for family caregivers of persons with spinal cord injuries: a randomized controlled trial. Behaviour Research and Therapy, 2008, 46(11):1220–1229 (E-pub 26 August 2008). 56. Elliott TR, Berry JW. Brief problem-solving training for family caregivers of persons with recent-onset spinal cord injuries: a randomized controlled trial. Journal of Clinical Psychology, 2009, 65:406-422. doi: http://dx.doi.org/10.1002/ jclp.20527 PMID:19229946 57. Aitken ME et al. Experiences from the development of a comprehensive family support program for pediatric trauma and rehabilitation patients. Archives of Physical Medicine and Rehabilitation, 2005, 86:175-179. doi: http://dx.doi.org/10.1016/j. apmr.2004.02.026 PMID:15641010
140
Chapter 6 Attitudes, relationships and adjustment
58. Holmbeck GN et al. Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions. Developmental and Behavioral Pediatrics, 2006, 27:249-277. doi: http://dx.doi. org/10.1097/00004703-200606000-00012 59. Mullins LL et al. The influence of respite care on psychological distress in parents of children with developmental disabilities: a longitudinal study. Children’s Services (Mahwah, N.J.), 2002, 5:123-138. doi: http://dx.doi.org/10.1207/ S15326918CS0502_06 60. Miles M. Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society, 2002, 17:643-658. doi: http://dx.doi.org/10.1080/0968759022000010425 61. Hartley S et al. How do carers of disabled children cope? The Ugandan perspective. Child: Care, Health and Development, 2005, 31:167-180. doi: http://dx.doi.org/10.1111/j.1365-2214.2004.00464.x PMID:15715696 62. Kumamoto K, Arai Y, Zarit SH. Use of home care services effectively reduces feelings of burden among family caregivers of disabled elderly in Japan: preliminary results. International Journal of Geriatric Psychiatry, 2006, 21:163-170. doi: http:// dx.doi.org/10.1002/gps.1445 PMID:16416464 63. Mayo-Wilson E, Montgomery P, Dennis JA. Personal assistance for adults (19–64) with physical impairments. [Review]Cochrane Database of Systematic Reviews, 2008, Issue 3:CD006856. doi: http://dx.doi.org/10.1002/14651858. CD006856.pub2 64. Sekaran P et al. Community reintegration of spinal cord-injured patients in rural south India. Spinal Cord, 2010, 48:628-632. doi: http://dx.doi.org/10.1038/sc.2010.6 PMID:20142832 65. Mansell J. Deinstitutionalisation and community living: progress, problems and priorities. Journal of Intellectual & Developmental Disability, 2006, 31:65-76. doi: http://dx.doi.org/10.1080/13668250600686726 PMID:16782591 66. Chiriacescu D. Shifting the paradigm in social service provision: making quality services accessible for people with disabilities in South East Europe. Belgrade, Disability Monitor Initiative for South East Europe, 2008. 67. Vaidyanathan S et al. Community-care waiting list for persons with spinal cord injury. Spinal Cord, 2001, 39:584-588. doi: http://dx.doi.org/10.1038/sj.sc.3101212 PMID:11641808 68. Müller R et al. The role of social support and social skills in people with spinal cord injury – a systematic review of the literature. Spinal Cord, 2012, 50:94-106. doi: http://dx.doi.org/10.1038/sc.2011.116 PMID:22006079 69. Bains P, Minhas AS. Profile of home-based caregivers of bedridden patients in North India. Indian Journal of Community Medicine, 2011, 36:114-119. doi: http://dx.doi.org/10.4103/0970-0218.84129 PMID:21976795 70. Lansley P et al. Adapting the homes of older people: a case study of costs and savings. Building Research and Information, 2004, 32:468-483. doi: http://dx.doi.org/10.1080/0961321042000269429 71. Kim KM, White GW, Fox MH. Comparing outcomes of persons choosing consumer-directed or agency-directed personal assistance services. Journal of Rehabilitation, 2006, 72:32-43. 72. DICAG. Disabled children’s action group (DICAG) South Africa. Manchester, Enabling Education Network, 2001 (http://www. eenet.org.uk/resources/docs/dicag.php, accessed 22 April 2012). 73. LaPlante MP et al. Unmet need for personal assistance services: estimating the shortfall in hours of help and adverse consequences. Journal of Gerontology. Series B, Psychological sciences and social sciences, 2004, 59:S98–S108. doi:10.1093/ geronb/59.2.S98 doi: http://dx.doi.org/10.1093/geronb/59.2.S98 PMID:15014097 74. Benjamin AE, Matthias R, Franke TM. Comparing consumer-directed and agency models for providing supportive services at home. [Part II]. Health Services Research, 2000, 35:351-366. PMID:10778820 75. Knickman JR, Stone RI. The public/private partnership behind the cash and counseling demonstration and evaluation: its origins, challenges, and unresolved issues. Health Services Research, 2007, 42:362-377. doi: http://dx.doi.org/10.1111/j.14756773.2006.00675.x PMID:17244288 76. Clark MJ, Hagglund KJ, Sherman AK. A longitudinal comparison of consumer-directed and agency-directed personal assistance service programmes among persons with physical disabilities. Disability and Rehabilitation, 2008, 30:689-695. doi: http://dx.doi.org/10.1080/09638280701463878 PMID:17852213 77. Kaye HS. The personal assistance workforce: trends in supply and demand. Health Affairs, 2006, 25:1113-1120. doi: http:// dx.doi.org/10.1377/hlthaff.25.4.1113 PMID:16835193 78. Warms CA et al. Measurement and description of physical activity in adult manual wheelchair users. Disability and Health Journal, 2008, 1:236-244. doi: http://dx.doi.org/10.1016/j.dhjo.2008.07.002 PMID:21122734 79. Kehn M, Kroll T. Staying physically active after spinal cord injury: a qualitative exploration of barriers and facilitators to exercise participation. BioMed Central Public Health, 2009, 9:168. doi: http://dx.doi.org/10.1186/1471-2458-9-168 PMID:19486521
141
International Perspectives on Spinal Cord Injury
80. Coble-Temple A, Mona LR, Bleecker T. Accessing personal assistance services in the workplace: struggles and successes. Journal of Vocational Rehabilitation, 2003, 18:113-123. 81. Weitzenkamp DA, Whiteneck GG, Lammertse DP. Predictors of personal care assistance for people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2002, 83:1399-1405. doi: http://dx.doi.org/10.1053/ apmr.2002.35087 PMID:12370876 82. Clevnert U, Johansson L. Personal assistance in Sweden. Journal of Aging & Social Policy, 2007, 19:65-80. doi: http://dx.doi. org/10.1300/J031v19n03_05 PMID:17613470 83. Takamine Y. The cultural perspectives of independent living and self-help movement of people with disabilities: a review of empirical findings. Asia Pacific Journal on Disability, 1998 (http://www.dinf.ne.jp/doc/english/asia/resource/z00ap/002/ z00ap00208.html, accessed 25 April 2012). 84. Bieler RB. Independent living in Latin America: progress in adapting a “First World” philosophy to the realities of the “Third World”. In: Garcia Alonso JV, ed. El movimiento de vida independiente: experiencias internacionales. Madrid, Fundación Luis Vives, 2003: 218–242. 85. NSIS. National Serious Injury Service. Wellington, Accident Compensation Corporation, Government of New Zealand, 2008 (http://www.acc.co.nz/making-a-claim/how-do-i-make-a-claim/ECI0012, accessed 27 April 2012). 86. Riddell S et al. The development of direct payments: implications for social justice. Social Policy and Society, 2005, 4:75-85. doi: http://dx.doi.org/10.1017/S1474746404002209 87. Schopp LH et al. Evaluation of a consumer-personal assistant training project. Disability and Rehabilitation, 2007, 29:403410. doi: http://dx.doi.org/10.1080/09638280600835903 PMID:17364793 88. Hagglund KJ et al. Consumer-assistant education to reduce the occurrence of urinary tract infections among persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2005, 10:53-62. doi: http://dx.doi.org/10.1310/JQ0J-BX6J-RAPB-P2T4 89. van Leeuwen CMC et al. Social support and life satisfaction in spinal cord injury during and up to one year after inpatient rehabilitation. Journal of Rehabilitation Medicine, 2010, 42:265-271. doi: http://dx.doi.org/10.2340/16501977-0502 PMID:20411223 90. Whiteneck G et al. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1793-1803. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.024 PMID:15520974 91. Pearcey TE, Yoshida KK, Renwick RM. Personal relationships after a spinal cord injury. International Journal of Rehabilitation Research, 2007, 30:209-219. doi: http://dx.doi.org/10.1097/MRR.0b013e32829fa3c1 PMID:17762766 92. Jensen MP et al. Psychosocial factors and adjustment to chronic pain in persons with physical disabilities: a systematic review. Archives of Physical Medicine and Rehabilitation, 2011, 92:146-160. doi: http://dx.doi.org/10.1016/j. apmr.2010.09.021 PMID:21187217 93. Feher S, Maly R. Coping with breast cancer in later life: the role of religious faith. Psycho-Oncology, 1999, 8:408-416. doi: http://dx.doi.org/10.1002/(SICI)1099-1611(199909/10)8:5<408::AID-PON409>3.0.CO;2-5 PMID:10559800 94. McColl MA et al. Changes in spiritual beliefs after traumatic disability. Archives of Physical Medicine and Rehabilitation, 2000, 81:817-823. PMID:10857530 95. Matheis EN, Tulsky DS, Matheis RJ. The relationship between spirituality and quality of life among individuals with spinal cord injury. Rehabilitation Psychology, 2006, 51:265-271. doi: http://dx.doi.org/10.1037/0090-5550.51.3.265 96. Forchheimer MB, Tate DG. The relationship of spirituality and depression to health among people with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2007, 12:23-34. doi: http://dx.doi.org/10.1310/sci1203-23 97. George LK et al. Spirituality and health: what we know, what we need to know. Journal of Social and Clinical Psychology, 2000, 19:102-116. doi: http://dx.doi.org/10.1521/jscp.2000.19.1.102 98. Franklin KL et al. Relationships among religiousness, spirituality, and health for individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2008, 14:76-88. doi: http://dx.doi.org/10.1310/sci1402-76 PMID:20351789 99. Babamohamadi H, Negarandeh R, Dehghan-Naveri N. Barriers to and facilitators of coping with a spinal cord injury for Iranian patients: a qualitative study. Nursing & Health Sciences, 2011, 13:207-215. doi: http://dx.doi.org/10.1111/j.14422018.2011.00602.x PMID:21595815 100. DeVivo MJ, Fine PR. Spinal cord injury: its short-term impact on marital status. Archives of Physical Medicine and Rehabilitation, 1985, 66:501-504. PMID:4026550 101. Crewe NM, Krause JS. Marital relationships and spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1988, 69:435-438. PMID:3377669 102. DeVivo MJ et al. Outcomes of post-spinal cord injury marriages. Archives of Physical Medicine and Rehabilitation, 1995, 76:130-138. doi: http://dx.doi.org/10.1016/S0003-9993(95)80022-0 PMID:7848071 103. Kreuter M et al. Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury. Spinal Cord, 1998, 36:252-261. doi: http://dx.doi.org/10.1038/sj.sc.3100592 PMID:9589525
142
Chapter 6 Attitudes, relationships and adjustment
104. Craig AR et al. Immunizing against depression and anxiety after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1998, 79:375-377. doi: http://dx.doi.org/10.1016/S0003-9993(98)90136-8 PMID:9552101 105. Arango-Lasprilla JC et al. Influence of race/ethnicity on divorce/separation 1, 2, and 5 years post spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:1371-1378. doi: http://dx.doi.org/10.1016/j.apmr.2009.02.006 PMID:19651271 106. DeVivo M, Richards JS. Community reintegration and quality of life following spinal cord injury. Paraplegia, 1992, 30:108-112. 107. El Ghatti AZ, Hanson RW. Outcome of marriages existing at the time of a male’s spinal cord injury. Journal of Chronic Diseases, 1975, 28:383-388. doi: http://dx.doi.org/10.1016/0021-9681(75)90034-X PMID:1159036 108. Chen HY, Boore JR. Living with a relative who has a spinal cord injury: a grounded theory approach. Journal of Clinical Nursing, 2009, 18:174-182. doi: http://dx.doi.org/10.1111/j.1365-2702.2008.02355.x PMID:19120747 109. Bocarro J, Sable J. Finding the right P.A.T.H: exploring the familial relationships and the role of a community TR program in the initial years after a spinal cord injury. Therapeutic Recreation Journal, 2003, 37:58-72. 110. Kreuter M. Spinal cord injury and partner relationships. Spinal Cord, 2000, 38:2-6. 111. Kennedy P et al. A multi-centre study of the community needs of people with spinal cord injuries: the first 18 months. Spinal Cord, 2010, 48:15-20. doi: http://dx.doi.org/10.1038/sc.2009.65 PMID:19528997 112. van Koppenhagen CF et al. Changes and determinants of life satisfaction after spinal cord injury: a cohort study in the Netherlands. Archives of Physical Medicine and Rehabilitation, 2008, 89:1733-1740. doi: http://dx.doi.org/10.1016/j. apmr.2007.12.042 PMID:18675395 113. Kreuter M, Sullivan M, Siösteen A. Sexual adjustment after spinal cord injury – comparison of partner experiences in pre- and postinjury relationships. Paraplegia, 1994, 32:759-770. doi: http://dx.doi.org/10.1038/sc.1994.122 PMID:7885719 114. Phelps J et al. Spinal cord injury and sexuality in married or partnered men: activities, function, needs, and predictors of sexual adjustment. Archives of Sexual Behavior, 2001, 30:591-602. doi: http://dx.doi.org/10.1023/A:1011910900508 PMID:11725457 115. Anderson KD et al. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 2007, 45:328-337. PMID:17033620 116. Sakellariou D, Sawada Y. Sexuality after spinal cord injury: the Greek male’s perspective. The American Journal of Occupational Therapy, 2006, 60:311-319. doi: http://dx.doi.org/10.5014/ajot.60.3.311 PMID:16776398 117. Sharma SC et al. Assessment of sexual functions after spinal cord injury in Indian patients. International Journal of Rehabilitation Research, 2006, 29:17-25. doi: http://dx.doi.org/10.1097/01.mrr.00001855947.56810.fc PMID:16432385 118. Zhang J. A survey of the needs of and services for persons with physical disability in China. Asia Pacific Disability Rehabilitation Journal, 2007, 18:49-85. 119. Anderson CJ et al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine, 2004, 27:S98-S106. PMID:15503711 120. Kreuter M, Sullivan M, Siösteen A. Sexual adjustment after spinal cord injury (SCI) focusing on partner experiences. Paraplegia, 1994, 32:225-235. doi: http://dx.doi.org/10.1038/sc.1994.42 PMID:8022632 121. Kreuter M, Siösteen A, Biering-Sørensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. Journal of Rehabilitation Medicine, 2008, 40:61-69. doi: http://dx.doi.org/10.2340/16501977-0128 PMID:18176739 122. Ville I, Ravaud J-F. Tetrafigap Group. Subjective well-being and severe motor impairments: the Tetrafigap survey on the long-term outcome of tetraplegic spinal cord injured persons. Social Science & Medicine, 2001, 52:369-384. doi: http:// dx.doi.org/10.1016/S0277-9536(00)00140-4 PMID:11330772 123. DeJong G, Branch LG, Corcoran PJ. Independent living outcomes in spinal cord injury: multivariate analyses. Archives of Physical Medicine and Rehabilitation, 1984, 65:66-73. PMID:6696605 124. Holicky R, Charlifue S. Ageing with spinal cord injury: the impact of spousal support. Disability and Rehabilitation, 1999, 21:250-257. doi: http://dx.doi.org/10.1080/096382899297675 PMID:10381237 125. Berkman AH et al. Sexual adjustment of spinal cord injured veterans living in the community. Archives of Physical Medicine and Rehabilitation, 1978, 59:29-33. PMID:619850 126. Murphy N, Young PC. Sexuality in children and adolescents with disabilities. Developmental Medicine and Child Neurology, 2005, 47:640-644. PMID:16138674 127. Fronek P et al. The effectiveness of a sexuality training program for the interdisciplinary spinal cord injury rehabilitation team. Sexuality and Disability, 2005, 23:51-63. doi: http://dx.doi.org/10.1007/s11195-005-4669-0 128. Post MWM et al. Sexological competence of different rehabilitation disciplines and effects of a discipline-specific sexological training. Sexuality and Disability, 2008, 26:3-14. doi: http://dx.doi.org/10.1007/s11195-007-9068-2 129. Forsythe E, Horsewell JE. Sexual rehabilitation of women with spinal cord injury. Spinal Cord, 2006, 44:234-241. doi: http:// dx.doi.org/10.1038/sj.sc.3101844 PMID:16172622
143
International Perspectives on Spinal Cord Injury
130. Fisher TL et al. Sexual health after spinal cord injury: a longitudinal study. Archives of Physical Medicine and Rehabilitation, 2002, 83:1043-1051. doi: http://dx.doi.org/10.1053/apmr.2002.33654 PMID:12161824 131. Urey JR, Henggeler SW. Marital adjustment following spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1987, 68:69-74. PMID:3813859 132. Sheija A, Manigandan C. Efficacy of support groups for spouses of patients with spinal cord injury and its impact on their quality of life. International Journal of Rehabilitation Research, 2005, 28:379-383. doi: http://dx.doi.org/10.1097/00004356200512000-00015 PMID:16319568 133. Crewe NM, Krause JS. Marital status and adjustment to spinal cord injury. The Journal of the American Paraplegia Society, 1992, 15:14-18. 134. Holmbeck GN, Devine KA. Psychosocial and family functioning in spina bifida. Developmental Disabilities Research Reviews, 2010, 16:40-46. doi: http://dx.doi.org/10.1002/ddrr.90 PMID:20419770 135. Boyer BA et al. Prevalence and relationships of post-traumatic stress in families experiencing pediatric spinal cord injury. Rehabilitation Psychology, 2000, 45:339-355. doi: http://dx.doi.org/10.1037/0090-5550.45.4.339 136. Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta analysis. Journal of Pediatric Psychology, 2002, 27:699-710. doi: http://dx.doi.org/10.1093/jpepsy/27.8.699 PMID:12403860 137. Bellin MH et al. Factors associated with the psychological and behavioural adjustment of siblings of youths with spina bifida. Families, Systems & Health, 2009, 27:1-15. doi: http://dx.doi.org/10.1037/a0014859 PMID:19630441 138. Skowronski E, Hartman K. Obstetric management following traumatic tetraplegia: case series and literature review. Australian and New Zealand Journal of Obstetrics and Gynaecology, 2008, 48:485-491. doi: http://dx.doi.org/10.1111/j.1479828X.2008.00909.x PMID:19032665 139. Jackson AB. Pregnancy and delivery. Sexuality and Disability, 1996, 14:211-219. doi: http://dx.doi.org/10.1007/ BF02590079 140. Alexander CJ, Hwang K, Sipski ML. Mothers with spinal cord injuries: impact on marital, family, and children’s adjustment. Archives of Physical Medicine and Rehabilitation, 2002, 83:24-30. doi: http://dx.doi.org/10.1053/apmr.2002.27381 PMID:11782828 141. Buck FM, Hohmann GW. Personality, behaviour, values and family relations of children of fathers with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1981, 62:432-438. PMID:6456711 142. Quigley MC. Impact of spinal cord injury on the life roles of women. The American Journal of Occupational Therapy, 1995, 49:780-786. doi: http://dx.doi.org/10.5014/ajot.49.8.780 PMID:8526223 143. Duvdevany I, Buchbinder E, Yaacov I. Accepting disability: the parenting experience of fathers with spinal cord injury. Qualitative Health Research, 2008, 18:1021-1033. doi: http://dx.doi.org/10.1177/1049732308318825 PMID:18650559 144. Aldridge J, Sharpe D. Pictures of young caring. Loughborough, University of Loughborough, 2007. 145. Isaksson G et al. Women’s perceptions of change in the social network after a spinal cord injury. Disability and Rehabilitation, 2005, 27:1013-1021. doi: http://dx.doi.org/10.1080/09638280500030431 PMID:16096255 146. Augutis M et al. Psychosocial aspects of traumatic spinal cord injury with onset during adolescence: a qualitative study. The Journal of Spinal Cord Medicine, 2007, 30:S55-S64. PMID:17874688 147. Cornegé-Blokland E et al. Quality of life of children with spina bifida in Kenya is not related to the degree of the spinal defects. Tropical Medicine & International Health, 2011, 16:30-36. doi: http://dx.doi.org/10.1111/j.1365-3156.2010.02680.x PMID:21070514 148. Mukherjee S. Transition to adulthood in spina bifida: changing roles and expectations. TheScientificWorldJournal, 2007, 7:1890-1895. doi: http://dx.doi.org/10.1100/tsw.2007.179 PMID:18060327 149. Thibadeau JK, Ariksson-Schmidt AI, Zabel TA. The National Spina Bifida Program transition initiative: the people, the plan and the process. Pediatric Clinics of North America, 2010, 57:903-910. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.010 PMID:20883880 150. Spina Bifida. Becoming an adult living successfully with spina bifida. SB Preparations (http://www.sbpreparations.com, accessed 24 May 2012). 151. Ridosh M et al. Transition in young adults with spina bifida: a qualitiative study. Child: Care, Health and Development, 2011, 37:866-874. doi: http://dx.doi.org/10.1111/j.1365-2214.2011.01329.x PMID:22007987 152. Ruck J, Dahan-Oliel N. Adolescence and young adulthood in spina bifida: self-report on care received and readiness for the future. Topics in Spinal Cord Injury Rehabilitation, 2010, 16:26-37. doi: http://dx.doi.org/10.1310/sci1601-26 153. Bellin MH, Kovacs PJ, Sawin KJ. Risk and protective influences in the lives of siblings of youth with spina bifida. Health & Social Work, 2008, 33:199-209. doi: http://dx.doi.org/10.1093/hsw/33.3.199 PMID:18773795 154. Webster G, Hindson LM. The adaptation of children to spinal cord injury of a family member: the individual’s perspective. SCI Nursing, 2004, 21:82-87. PMID:15553078 155. Gerschick TJ, Miller AS. Coming to terms: masculinity and physical disability. In: Sabo DF, Gordon DF, eds. Men’s health and illness: gender, power, and the body. Thousand Oaks, CA, Sage Publications, 1995 183–204.
144
Chapter 6 Attitudes, relationships and adjustment
156. Buchanan KM, Elias LJ. Psychological distress and family burden following spinal cord injury: concurrent traumatic brain injury cannot be overlooked. Axone (Dartmouth, N.S.), 2001, 22:16-17. PMID:14625968 157. Post MW et al. Predictors of health status and life satisfaction in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1998, 79:395-401. doi: http://dx.doi.org/10.1016/S0003-9993(98)90139-3 PMID:9552104 158. Charlifue S, Gerhart K. Changing psychosocial morbidity in people aging with spinal cord injury. NeuroRehabilitation, 2004, 19:15-23. PMID:14988584 159. Livneh H, Antonak RF. Psychosocial adjustment to chronic illness and disability. Gaithersburg, MD, Aspen Publishers, 1997. 160. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http:// dx.doi.org/10.1038/sc.2011.182 PMID:22270190 161. Krause JS. Aging, life satisfaction, and self-reported problems among participants with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2010, 15:34-40. doi: http://dx.doi.org/10.1310/sci1503-34 162. Moos RH, Holahan CJ. Adaptive tasks and methods of coping with illness and disability. In: Martz E, Livneh H, eds. Coping with chronic illness and disability: theoretical, empirical and clinical aspects. New York, NY, Springer, 2007. 163. van Leeuwen CMC et al. Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review. Spinal Cord, 2012, 50:174-187. PMID:22042298 164. van Lankveld W, van Diemen T, van Nes I. Coping with spinal cord injury: tenacious goal pursuit and flexible goal adjustment. Journal of Rehabilitation Medicine, 2011, 43:923-929. PMID:21947183 165. Chappell P, Wirz S. Quality of life following spinal cord injury for 20−40 year old males living in Sri Lanka. Asia Pacific Disability Rehabilitation Journal, 2003, 14:162-178. 166. Salick EC, Auerbach CF. From devastation to integration: adjusting to and growing from medical trauma. Qualitative Health Research, 2006, 16:1021-1037. doi: http://dx.doi.org/10.1177/1049732306292166 PMID:16954523 167. Chau L et al. Women living with a spinal cord injury: perceptions about their changed bodies. Qualitative Health Research, 2008, 18:209-221. doi: http://dx.doi.org/10.1177/1049732307312391 PMID:18216340 168. Slivinski J, Mehta S, Teasell RW. Depression following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010. 169. Orenczuk S et al. Depression following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010. 170. Mehta S et al. An evidence-based review of the effectiveness of cognitive behavioral therapy for psychosocial issues postspinal cord injury. Rehabilitation Psychology, 2011, 56:15-25. doi: http://dx.doi.org/10.1037/a0022743 PMID:21401282 171. King C, Kennedy P. Coping effectiveness training for people with spinal cord injury. The British Journal of Clinical Psychology, 1999, 38:5-14. doi: http://dx.doi.org/10.1348/014466599162629 PMID:10212733 172. Kennedy P et al. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. The British Journal of Clinical Psychology, 2003, 42:41-52. doi: http://dx.doi.org/10.1348/014466503762842002 PMID:12675978 173. Duchnick JJ, Letsch EA, Curtiss G. Coping effectiveness training during acute rehabilitation of spinal cord injury/dysfunction: a randomized clinical trial. Rehabilitation Psychology, 2009, 54:123-132. doi: http://dx.doi.org/10.1037/a0015571 PMID:19469601 174. Sin NL, Lyubomirsky S. Enhancing well-being and alleviating depressive symptoms with positive psychology interventions: a practice-friendly meta-analysis. Journal of Clinical Psychology, 2009, 65:467-487. doi: http://dx.doi.org/10.1002/ jclp.20593 PMID:19301241 175. Peter C et al. Psychological resources in spinal cord injury: a systematic literature review. Spinal Cord, 2012, 50:188-201. doi: http://dx.doi.org/10.1038/sc.2011.125 PMID:22124343 176. Zahl ML et al. SCI/D forum to increase active living: the effect of a self-efficacy and self-affirmation based SCI/D forum on active living in adults with spinal cord injury/disease. SCI Psychosocial Process, 2008, 21:5-13. 177. Rose A et al. The effect of a self-efficacy based forum on life satisfaction for individuals with spinal cord injury or disease. Annual in Therapeutic Recreation, 2008, 16:49-56. 178. Kennedy P, Taylor N, Hindson L. A pilot investigation of a psychosocial activity course for people with spinal cord injuries. Psychology Health and Medicine, 2006, 11:91-99. doi: http://dx.doi.org/10.1080/13548500500330494 PMID:17129898 179. Latimer AE, Ginis KAM, Arbour KP. The efficacy of an implementation intention intervention for promoting physical activity among individuals with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology, 2006, 51:273-280. doi: http://dx.doi.org/10.1037/0090-5550.51.4.273 180. Arbour-Nicitopoulos KP, Ginis KA, Latimer AE. Planning, leisure-time physical activity, and coping self-efficacy in persons with spinal cord injury: a randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 2009, 90:2003-2011. doi: http://dx.doi.org/10.1016/j.apmr.2009.06.019 PMID:19969161
145
International Perspectives on Spinal Cord Injury
181. Tate DG, Forchheimer M. Enhancing community reintegration after inpatient rehabilitation for persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 1998, 4:42-55. doi: http://dx.doi.org/10.1310/FK0R-2K94-BN99-52FY 182. Wiles R, Cott C, Gibson BE. Hope, expectations and recovery from illness: a narrative synthesis of qualitative research. Journal of Advanced Nursing, 2008, 64:564-573. doi: http://dx.doi.org/10.1111/j.1365-2648.2008.04815.x PMID:19120569 183. Kortte KB et al. Positive psychological variables in the prediction of life satisfaction after spinal cord injury. Rehabilitation Psychology, 2010, 55:40-47. doi: http://dx.doi.org/10.1037/a0018624 PMID:20175633 184. Payne JA. The contribution of group learning to the rehabilitation of spinal cord injured adults. Rehabilitation Nursing, 1993, 18:375-379. doi: http://dx.doi.org/10.1002/j.2048-7940.1993.tb00792.x PMID:7938893 185. House LA et al. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives. Spinal Cord, 2009, 47:882-886. doi: http://dx.doi.org/10.1038/sc.2009.64 PMID:19528994 186. SCIA. Spinal Cord Injuries Australia (http://scia.org.au, accessed 5 April 2013). 187. Killeen G. Taxi discrimination complaint settled. Accord, Winter 2011, pp. 10−11 (http://scia.org.au/images/SCIA-media/ publications/accord/Accord%202011%20Winter.pdf?bcsi_scan_97961A1EAF8C426F=x54bUmSQODtKN2kJiJYmnwwV7N5V AAAAtIQqDg==&bcsi_scan_filename=Accord%202011%20Winter.pdf, accessed 20 February 2012). 188. ESCIF. European Spinal Cord Injury Federation (http://www.escif.org/, accessed 20 March 2012). 189. GSCICN. Global Spinal Cord Injury Consumer Network (http://globalsci.net/, accessed 19 April 2012). 190. Livability Ireland (http://www.livability.ie, accessed 17 April 2013). 191. Motivation. Freedom through mobility (http://www.motivation.org.uk, accessed 26 April 2013). 192. Gilson SF, Tusler A, Gill C. Ethnographic research in disability identity: self-determination and community. Journal of Vocational Rehabilitation, 1997, 9:7-17. doi: http://dx.doi.org/10.1016/S1052-2263(97)00017-2 193. Campbell J, Oliver M. Disability politics: understanding our past, changing our future. London, Macmillan, 1996. 194. Ville I et al. Disability and a sense of community belonging. A study among tetraplegic spinal-cord-injured persons in France. Social Science & Medicine, 2003, 56:321-332. doi: http://dx.doi.org/10.1016/S0277-9536(02)00030-8 PMID:12473317 195. Manns PJ, Chad K. Determining the relation between quality of life, handicap, fitness, and physical activity for persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1566-1571. doi: http://dx.doi.org/10.1016/ S0003-9993(99)90331-3 PMID:10597807 196. Monnazzi G. Paraplegics and sports: a psychological survey. International Journal of Sport Psychology, 1982, 13:85-95. 197. Hanson CS, Nabavi D, Yuen HK. The effect of sports on level of community integration as reported by persons with spinal cord injury. The American Journal of Occupational Therapy, 2001, 55:332-338. doi: http://dx.doi.org/10.5014/ ajot.55.3.332 PMID:11723975 198. Madorsky JGB, Madorsky A. Wheelchair racing: an important modality in acute rehabilitation after paraplegia. Archives of Physical Medicine and Rehabilitation, 1983, 64:186-187. PMID:6838349 199. McVeigh SA et al. Influence of sport participation on community integration and quality of life: a comparison between sport participants and non-sport participants with spinal cord injury. The Journal of Spinal Cord Medicine, 2009, 32:115124. PMID:19569458 200. Martin Ginis KA et al. Physical activity and subjective well-being among people with spinal cord injury: a meta-analysis. Spinal Cord, 2010, 48:65-72. doi: http://dx.doi.org/10.1038/sc.2009.87 PMID:19581918 201. Slater D, Meade MA. Participation in recreation and sports for persons with spinal cord injury: review and recommendations. NeuroRehabilitation, 2004, 19:121-129. PMID:15201471 202. Tasiemski T, Brewer BW. Athletic identity, sport participation and psychological adjustments in people with spinal cord injury. Adapted Physical Activity Quarterly; APAQ, 2011, 28:233-250. PMID:21725116 203. Anneken V et al. Influence of physical exercise on quality of life in individuals with spinal cord injury. Spinal Cord, 2010, 48:393-399. doi: http://dx.doi.org/10.1038/sc.2009.137 PMID:19841634 204. Wu SK, Williams T. Factors influencing sport participation among athletes with spinal cord injury. Medicine and Science in Sports and Exercise, 2001, 33:177-182. doi: http://dx.doi.org/10.1097/00005768-200102000-00001 PMID:11224802 205. Cooper M. Come, fly with me! Sports N’Spokes, 2004, 30:8-13. 206. Martin B. Bike on! Sports N’Spokes, 2001, 27:43-49. 207. Thompson M. Flip pin’out. Sports N’Spokes, 1999, 25:16-18. 208. Motivation. The affordable, quality sports wheelchair 2011. (http://www.motivation.org.uk/sports/sports-wheelchair, accessed 14 April 2011).
146
Chapter 7 Spinal cord injury and enabling environments
“After some months in hospital and some rehabilitation, I was confronted by many challenges when I returned to my community. First, I could not get to my place of work, which was on the third floor of a five-story building. I couldn’t use stairs anymore and there were no elevators. Second, I could not access many services because of the way buildings were structured in my community. I had to travel long distances in search of accessible places to get services. I had lost my car when I was shot, and so I had to rely on public transportation, and the many operators were not willing to accommodate a person in a wheelchair. A lot needs to be done by the government to enforce laws in these areas.” (Robert, Uganda) “Accessibility to the hospitals was another problem. While all the big hospitals were wheelchair accessible, clinics like those of a dentist, ophthalmologist, etc. were not. Some were even on the second or third floors of buildings that did not have elevators. In these instances, I often had to be carried in my wheelchair up the stairs, which was a difficult and dangerous adventure. But I had to do it many times. The toilets in many hospitals were not wheelchair friendly. I guess the attitude towards the lack of accessible toilets was: ‘There aren’t many Spinal Cord Injury (SCI) patients, so why waste space?’” (Alexis, India) “When I go out to do something in my electric wheelchair, I could take a taxi, the public transportation system, or a high-speed train. However, these options are expensive, even with the discount disabled persons receive. There are only a few public buses with lifts in them, and they must be ordered a week in advance. So if there is an emergency, one cannot depend on being able to use a public bus for transportation. In addition, only a few lines have bus stops without steps. Because of this, I usually use a taxi to commute and the fare is very expensive.” (Co-Han Yee, Taiwan, China) “It is very difficult for me to leave my house. Sidewalks are very uneven and in bad condition. I always depend on other people to move around. Public transport in the part of the city where I live is in bad condition and it is very difficult for me to take it even with help. I cannot be independent. How can I participate in a society like this? I feel frustrated. I take cocaine and marijuana. I play guitar.” (Diego, Argentina) “I rebuilt my house after the earthquake since the original house was totally damaged. But my family and I had no idea how to make the environment convenient for my movement. The NGO adapted my washroom and kitchen to make it easier for me to move around. I couldn’t even go into the washroom before the adaptation but now I can take a bath by myself. I can cook meals sitting in the wheelchair. Everything is convenient and I encounter no major problems when I am in my house.” (Chen, China)
7
Spinal cord injury and enabling environments Physical environments may facilitate the participation of people with spinal cord injury (SCI) or may act as barriers to participation. Accessibility is one of the cross-cutting general principles listed in Article 3 of the Convention on the Rights of Persons with Disabilities (CRPD) while Article 9 specifically highlights the importance of accessibility, including buildings and transportation (1). Accessibility underwrites the right to live independently in the community (Article 19) and to participate fully in all areas of life; failure to ensure accessibility can constitute discrimination. This chapter focuses on the housing, transportation and public accommodations necessary to achieve these outcomes. The physical environment and transportation are among the key environmental barriers for people with SCI (2– 6). Evidence for the impact of these factors on participation is still sparse (7). Accessibility measures need to respond to the range of needs of people with SCI: making a home wheelchair accessible is vital but, if accessibility ends at the front door and the individual cannot move around the community, use transportation and participate in education, employment or other social activities, then the environment still remains a barrier. Accessibility strategies are constrained by cost and human resources, but incremental improvement is always feasible (8). For countries that have ratified the CRPD, evidence of progress towards full accessibility is required by the concept of “progressive realization.” Ensuring accessibility for people with SCI makes the world easier to navigate for everyone else too.
Barriers for people with spinal cord injury Community reintegration will depend on the extent to which a person with SCI can overcome environmental barriers. In this section, environmental barriers are explored progressively, beginning with housing – to which a person who recently developed SCI will have to return after rehabilitation – then continuing with transport, which will be vital to participating in the community, and finishing with public buildings – such as schools and workplaces – where access is needed to fulfil rights to education and employment. 149
International Perspectives on Spinal Cord Injury
Housing Home is the most important environment in life (9–11). For adults with SCI, leaving the rehabilitation hospital may be difficult if their accommodation has barriers such as stairs, small bathrooms and inaccessible kitchens (12–14), which in effect make them “prisoners in their own homes” (15). The result may be what is often called “bed-blocking,” when patients fit enough to go home are forced to stay in the hospital due to insufficiently accessible housing (16, 17). The unmet need for accessible housing is a global problem for people with disabilities, particularly those with mobility impairments such as SCI, although only limited data are available. Evidence from surveys in southern Africa shows that disabled people generally live in housing that is inferior to that of nondisabled people (18). Studies in different regions of the world suggest that, across most low-income countries, people with mobility and other restrictions have limited independent housing, although it should be noted that living together with families is more common for everyone in these settings (19, 20). Even in countries where there are high levels of home ownership, financial support for home adaptation may be inadequate (21). In the United Kingdom, for instance, research has shown that provision for people with disabilities is insufficient in terms of accessible housing and funding for adaptation costs (22–24). Some 78 000 wheelchair users in the United Kingdom are estimated to have unmet housing needs (25). If a person with SCI cannot afford his or her own home, and living with relatives is not an option, social housing may be an alternative (26, 27). In Europe, provision ranges from less than 2% of total housing stock (Estonia, Greece, Spain) to 35% (Netherlands) (28). The demand for social housing is generally far greater than the supply (26). Even when social housing is available, it is rarely sufficiently accessible. This shortfall remains even when social housing operates a quota for people with disabilities, as in coun150
tries such as El Salvador, India and Thailand (19, 20). Ironically, accessible social housing is often occupied by nondisabled people: in England only 22% of wheelchair standard homes were let to households containing wheelchair users (25).
Transportation Access to transport is required to participate in education, employment and social activities outside the home. Public transport is often inaccessible to people with SCI (6, 29). Ramps, lifts and safety lock-down systems may be absent, poorly maintained or unsafe (30), and transport personnel may not be trained in the accessibility features (31). In fixed-route buses and rail systems, the desired destination may not be close to the bus or train stops (30). Public transport systems that operate on demand, such as wheelchair-accessible taxis, may require appointments to be made several days in advance, thus reducing flexibility (30). A private car can be an alternative if sufficient resources (financial and technical) exist, as the costs of modified driving controls or vehicle adaptations can be prohibitive. Airports and airlines should have provisions enabling people with SCI to fly. However, toilets on aircraft are often inaccessible and, in some cases, regulations prevent individuals who cannot move about independently from travelling by themselves (32). Underlying these practical problems are systemic failures. For example, a break in the “travel chain” (i.e. when part of the journey is not accessible) can mean that wheelchair users cannot reach their destination (33). Even where laws explicitly require mobility accessibility for public transportation, they may not be effective, especially in developing countries, because there are insufficient resources for enforcement (34). If regulations require taxi companies when purchasing new vans to ensure that they are accessible for disabled people, a company may avoid this by buying only used vans (35). Since accessible taxis and accessible minibuses on para-
Chapter 7 Spinal cord injury and enabling environments
transit/special transport services are expensive to purchase, it may be a challenge to make the service cost-effective and sustainable (35 –37).
Public buildings The inaccessibility of public buildings can hinder participation for people with SCI (38, 39). Studies show that the five major areas in which accessibility is essential for participation of wheelchair users are parking, routes to public buildings, ramps, entrances and restrooms/toilets (40, 41). For instance, a survey in South Africa found that less than 10% of hospitals had a fully accessible toilet for people with disabilities (42). Doors are often too heavy for people with SCI to open easily, handrails – essential for people with SCI who can walk with crutches – may be missing, and uneven sidewalks or cobbles, narrow pathways, and steep terrain and lack of curb cuts all limit accessibility to public accommodation for people in wheelchairs (43–45). Unsafe road crossings and pavements/sidewalks contribute to the high rate of injuries caused to wheelchair users by cars (46 –48). Progress in addressing issues of accessibility is often uneven. In some cities in the USA, compliance rates for buildings constructed after 1980 were very high – 97% in one city (49). Elsewhere, however, as in Turkey, United Arab Emirates and Zimbabwe, the rates are less than half that, and progress towards accessibility is reported to be very slow (50 –52). Sometimes the situation is dire: in Ibadan, Nigeria, less than 18% of public buildings were found to be wheelchair accessible (53), while in Bangkok, Thailand, a survey found that almost no public or commercial building was fully accessible to wheelchair users (54). As with transport, it is not enough to have laws, policies and standards if they are not enforced. In a recent survey of 36 countries in Asia and the Pacific, 25 had regulations about accessibility to public buildings and transport, yet none of these laws and standards were mandatory or were supported by enforcement
mechanisms (55). A United Nations survey of 114 countries found that, while nearly half had policies on accessibility to public buildings, most lacked public educational programmes to explain accessibility and many had not allocated financial resources to implement the policies or had no official agency to enforce or monitor these policies (1). Across domains, factors standing in the way of accessibility include: ■ the absence of regulatory frameworks and accessibility standards; ■ the lack of enforcement mechanisms; ■ the lack of financial resources or public procurement policies focusing on accessibility; ■ institutional limitations (such as lack of interagency and public−private cooperation, or inadequate planning capacity); ■ a general lack of awareness of the need and benefits of accessibility at all levels; ■ the absence of user participation in the development and implementation of policy.
Addressing the barriers Almost all the barriers that people with SCI confront daily in the physical environment, transportation and other facilities and services open or provided to the public, both in urban and rural areas, can be addressed. Moreover, innovative and economically feasible good practices are available for doing so.
Cross-cutting measures The following measures are relevant across the environmental domains of housing, transport and public buildings. Adoption of universal design has the potential not only to ensure access for people with disabilities but also to benefit older people, parents and others who have difficulties with mobility in buildings, transportation and around the community (14, 33).
151
International Perspectives on Spinal Cord Injury
Development of accessibility standards can ensure access for people who use wheelchairs, including people with SCI. The CRPD requires States Parties to develop, promulgate and monitor the implementation of minimum standards for public accommodation (1). For wheelchair users these should include access to buildings – curb cuts, safe street crossings, and accessible entries – as well as accessibility within buildings, particularly toilets. Although removing the major obstacles makes an important difference to people in wheelchairs, full accessibility should always remain the goal. Detailed standards are readily available nationally and internationally (e.g. (41, 56)). This increasingly includes low- and middle-income settings. In Uganda, for example, the National Union of the Disabled Persons of Uganda together with the Ministry of Gender, Labour and Social Development produced access standards (57). Standards may need to be revised to respond to changes in technology and needs (e.g. wheelchair design, increasing prevalence of obesity). Enforcement of accessibility standards. In the USA, voluntary standards were created by law in 1961, but soon proved to be ineffective and were replaced with mandatory standards in 1968 (58), which were reinforced a decade later by a procedure in which individuals could bring complaints against public buildings that were inaccessible. This approach was further strengthened by the provisions of the Americans with Disabilities Act 1990. Municipalities and businesses now incorporate accessibility into their plans for new construction to avoid the prospect of complaints. Enforcement requires a responsible agency or other focal point to monitor compliance with standards. Involvement of people with SCI, along with other disability groups, in prioritizing investments to promote access and in monitoring access outcomes. People with disabilities should be involved in standards development, in auditing access, researching compliance (e.g (59)), monitoring access and campaigning for improvements 152
(60). The Council of Canadians with Disabilities, for instance, has for nearly 30 years worked with cities and provinces in monitoring the implementation of accessibility standards and advising on issues such as space requirements for wheelchair use in buildings (61). In Latin America, disabled people’s organizations such as Mexico’s Libre Acceso and Brazil’s Center for Independent Living have actively campaigned for accessibility in transportation, participated in the development and promulgation of access guidelines, and have promoted their use (62). In Japan and the USA people with disabilities have played a key role in monitoring the implementation of accessibility through audits and through contribution to consultations (63). Training for stakeholders on accessibility issues facing people with disabilities. Awareness of and knowledge about accessibility in the public sphere is vital. Disability awareness training or disability equality training helps change attitudes and improves respect for people with disabilities who use facilities. Basic technical information about accessibility needs and solutions is useful for those who develop and enforce policy. University and in-service training courses for architects, engineers and planners should include exposure to the principles and practices of universal design and accessibility as standard course elements (60). For example, since the passage in 2008 of Malaysia’s People with Disabilities Act, Malaysian universities have been encouraged to introduce “barrier-free architecture” courses to encourage research, to disseminate accessibility solutions and to increase public awareness. In Colombia, the National University prepared a manual on accessibility to the built environment and the means of transportation (19). Private entities that offer facilities and services that are open or provided to the public must take into account all aspects of accessibility for people with disabilities. Commercial industries involved in home construction and furnishings should be encouraged to implement the principles of universal design in their
Chapter 7 Spinal cord injury and enabling environments
own design and development processes, and to share this information with policy developers at national level (64, 65). Further research on what works in improving accessibility is required. Despite expertise in universal design, there are still gaps in knowledge about what works to increase accessibility in all contexts, from homes to communities. We know little about how exactly the physical environment limits, and how it can be altered to facilitate, the participation of people with disabilities (6, 7, 66 – 69). Although there have been some significant advances, among the most urgent research priorities is a reliable and valid instrument for assessing the extent to which the built environment constitutes a barrier for people with mobility limitations (3, 68, 70 –74). Assessment and measurement of the extent of inaccessibility (69) is the first step to a more evidence-based approach to developing standards. Evidence is also needed to show the economic and social benefits of making environments accessible.
Housing The solutions to housing barriers need to include modifications to existing housing (including social housing) and accessible new housing construction. Appropriate home modifications for people with SCI have wide-ranging social benefits. Home adaptations enable people with SCI to leave hospitals and other high-cost care settings. In addition they can also help reduce strain on caregivers, prevent accidents, improve overall health and functioning, and reduce social exclusion (14, 75 –78). Modifications to the home environment to facilitate functioning can vary widely and may change over time. Basic features may include ramps, low-friction floor surfaces and lowered working surfaces. More expensive modifications can include stair lifts or elevators, and an intercom or other control system (77). Assessments of interactions between person and environment over time may be needed to maximize functioning in the home (79). It is always
sensible to fit with cultural norms of desirable housing and avoid “institutional-style” design solutions (24). Modifications to existing accommodation can be cost effective. A study in Sweden of people with SCI found that up to 30% of moves to nursing homes could have been avoided if housing had been made accessible (80), a result that has been reproduced in England (81). Providing owner occupiers, landlords and tenants with “disabled facilities grants” to finance home modifications across the United Kingdom has been shown to be cost-effective when compared with the costs of moving individuals to other living arrangements (82). In Canada, the Residential Rehabilitation Assistance Program for Persons with Disabilities, administered by the Canada Mortgage and Housing Corporation, offers financial assistance to allow homeowners and landlords to pay for access improvement to their properties (83). Information is needed to promote accessible housing. In the USA, the State University of Colorado has produced detailed technical pamphlets and a web site that can be used by builders to learn about space needs and other details for wheelchair home retrofitting (84). Resources available from Community-based Rehabilitation (CBR) programmes in India, using guidelines for care and community integration after SCI produced by the Government of India and the WHO Community-based rehabilitation: CBR guidelines (85), provide basic information on low-cost modifications in the home and simple tips for improving access in low-income settings. Collaboration between government, disability organizations, and the private sector (for profit and not-for-profit) can help make housing accessible. Since 1997, the National Cooperative Housing Union in Kenya has linked the government, disability groups and the private sector to identify available land and provided technical assistance and loan capital to facilitate accessible housing construction (86). Rebuilding in Sri Lanka after the 2004 Indian Ocean earthquake and tsunami is another example that illustrates 153
International Perspectives on Spinal Cord Injury
Box 7.1.
Sri Lanka: recovery after the 2004 Indian Ocean earthquake and tsunami
The Indian Ocean tsunami of 2004 cost tens of thousands of lives in Sri Lanka and destroyed countless buildings. However, the reconstruction provided an opportunity to develop more inclusive environments. Disabled and elderly people in rural areas of Sri Lanka often find it difficult to move around in their own homes, let alone in their neighbourhoods. People with mobility difficulties often rely on others to assist them, which affects the independence of other family members including their ability to undertake full-time employment. No reliable statistics on disability exist for Sri Lanka, but decades of civil war have increased the number of people experiencing disability. After the tsunami, a local disability organization, in partnership with an international organization, undertook to rebuild one destroyed village as a model inclusive village, recruiting an architect and an occupational therapist to advise on accessibility. No national standards or guidelines on accessibility were available. European guidelines were used, which proved problematic due to their urban and “European” bias. With limited financial resources, 55 simple but adaptable homes and an accessible community centre were completed according to specifications set out by the government. Ramped access or stepped access with railings was provided as needed. Inside, all homes had level access, doorways at a specified minimum width, and minimum turning-circle space in all rooms. A combined level-access toilet and washing area was added at the side of each house. Where required, handrails and an over-toilet commode, which doubled as a shower chair, were provided. Switches, handles and taps were all located within specified ranges of reach. Before the construction, the elderly and disabled villagers and their caregivers were reluctant to accept the new style of housing, especially the attached toilet, but afterwards they were relieved to have better facilities. People without mobility restrictions often converted the attached bathroom into another bedroom and constructed an alternative washing area outside. The community centre, with ramped access and accessible toilets, enabled people with disabilities, less mobile older people and caregivers who might not normally be involved in social activities to participate in community events. Important lessons were learned, namely:
■■ Inclusive design must take careful account of cultural and economic circumstances. ■■ The use of guidelines developed for high-income countries may not be appropriate in low-income countries, particularly in rural areas. Better solutions can be found that fit local conditions.
■■ Close supervision was needed at the construction stage, as the builders were unfamiliar with the main elements of the design.
how housing can be made accessible for people on low incomes when different sectors collaborate (see Box 7.1). Making new housing accessible is much cheaper than retrofitting existing homes and provides the widest choice. To increase the stock of accessible homes, an integrated and coordinated public- and private-sector effort is required that combines regulation and funding, the development of a market for accessible homes, incentives, interagency coordination, information and protection from discrimination (87, 88). Policy can help make a proportion of new housing accessible (10, 89). In the United 154
Kingdom, a response to population ageing − “Lifetime Homes” – has produced dwellings meeting a wide range of mobility requirements at minimal additional costs (90). Another important aspect of housing accessibility, called “visitability,” involves enabling people in wheelchairs to access the homes of relatives or friends who may or may not themselves have mobility limitations. “Visitability” mandates features such as at least one no-step entrance, wide doorways and ground-floor bathrooms (91, 92). A range of financial mechanisms can be used to increase accessible housing. These include tax incentives and low-interest loans to
Chapter 7 Spinal cord injury and enabling environments
private builders of housing projects to encourage them to build accessible homes – as required by the USA’s Fair Housing Act 1988 and similar legislation. Also in the USA, the Housing Act of 1959 provides capital grants to not-for-profit organizations to cover the costs of building, rehabilitating or buying property. The state-run Norwegian Housing Bank, under its Lifecycle Housing programme, similarly offers low-cost loans to builders to encourage them to build accessible homes. Greater market acceptance of Lifecycle Housing has been achieved by linking accessibility with quality design and encouraging partnerships between architects, disability groups and builders (80, 89). By May 2004, the programme in Oslo had produced 260 873 housing units, 85% of which were occupied by elderly people and 15% by nonelderly people with disabilities (93). When it was later discovered that community groups interested in contracting builders for accessible housing lacked access to sufficient capital, the Disability Opportunity Fund was created in the USA in 2007 to supplement the incentives in legislation (88). Other mechanisms – such as explicitly labelling homes “accessible” or providing design awards – may encourage construction of accessible housing. Labelling homes “accessible” may assist in combating the stigma associated with living in a “special” home and may stimulate consumer demand. In a community-led housing project in British Columbia, Canada, for example, the concept of “flex housing” was used to design, and increase demand for, wheelchair-accessible homes in the Seabird Island community (94). Flex housing designs allow residents to easily change the connections between rooms and the size of rooms to increase accessibilities. National awards to designers and architects, and community service awards for accessible housing projects have been used in Australia and the United Kingdom to encourage the building of accessible housing (89). Improving accessible social housing is important for people with SCI who have limited financial means. The complex funding and coor-
dination requirements for providing high-quality social or subsidized housing create challenges, even in the wealthiest of countries (26, 27). Many innovative approaches to making social housing accessible have developed in countries across Europe over the past 20 years (95–97), often driven by population ageing (81). These include: ■ In Denmark, a cooperative housing company has built blocks of apartments linked by common areas for people with mobility difficulties. The Government of Denmark funded the construction costs, while private finance paid for the extra disabled facilities and the local authority pays the care costs. “Special-needs housing” (for people with disabilities, older people and large families) makes up 50% of new social housing in Denmark (98). ■ In Sweden, a housing scheme in Stockholm was built on former industrial land provided by a private firm that worked with city planners to design and build accessible cooperative housing developments with a community centre, a kindergarten, a youth centre and health clinic (96). ■ In the Netherlands, since 1997 all new homes in the private and social housing sectors have been required to be designed according to adaptable homes standards laid down in the national building code, which covers such issues as thresholds, space requirements for wheelchairs, door widths, and heights of electric sockets and working surfaces. The gap between consumer demand and government supply can be reduced by providing information. In the United Kingdom, the London Accessible Housing Register is designed to encourage owners of social housing to make accessibility adaptations (91). The register not only acts as an information conduit to people who need accessible housing, but also sets criteria of accessibility by categorizing available social housing according to detailed standards of wheelchair accessibility that cover the entire 155
International Perspectives on Spinal Cord Injury
home (99). Accessible housing registries have also been developed by local government and disabled people’s organizations in parts of Canada and Australia (100). Similar approaches have been successfully developed in Rwanda as part of an extensive programme to provide accessible housing for ex-combatants and civilians disabled as a result of the 1994 genocide (101). It is important that housing solutions do not segregate people with disabilities. Thus universal design and the inclusion of accessible housing within mixed residential settings are the preferred solutions.
ingly accessible (107), and rapid transit systems in cities such as Calgary, Canada; Beijing, China; and Dar es Salaam, United Republic of Tanzania, have implemented universal design principles (104, 108 –110). The goal should be to implement solutions that address the widest spectrum of mobility difficulties, rather than relying on ad hoc remedies such as folding ramps or portable lifts that depend on staff availability (111).
Special transport services
Transportation Usable public transportation is one of the most important facilitators for people with disabilities (102). Transportation policy should be a component of a national disability strategy, while access should be part of any national transport strategy. Transport accessibility is best addressed with a comprehensive policy that can be monitored by a responsible agency with the participation of people with disabilities. It is more effective and less costly to build accessibility into transportation from the beginning rather than to retrofit (8). The challenges are not merely structural and financial; they are also often psychological – such as fear for one’s safety (34, 36, 62, 103). Strategies that can be used to promote accessibility across a range of transport options are outlined below.
The renovation of an existing public system presents technical and financial problems (104), such as ensuring space requirements for wheelchairs, overcoming the height difference between street and vehicle levels, and limiting the gap between vehicle and platform (105, 106). “Kneeling buses,” automatic lifts, elevators and ramps can transform accessibility. Subways in major cities of the world are becoming increas156
Fixed-route bus, tram, subway and rail systems
The need for transport that is seamlessly accessible for wheelchair users (33, 112) has led to a move to demand-responsive approaches, such as paratransit services found in both high-income and low-income settings (113, 114). However, such special transport services (STS) can be perceived as “special treatment” for a few, or as too costly and unsafe (35, 36). To address these perceptions, the Swedish “Brukslinjen” project started in 2001 to bring rural and urban municipalities together to fully integrate the existing public transport system – including school buses and other regular route traffic – with the flexible route STS. The Brukslinjen project has been extended throughout the country (35, 37). Sweden relies extensively on taxis for STS (35). A more technological solution was implemented with RegioTaxi KAN in the Netherlands and the FLIPPER initiative in Bologna, Italy. Both of these use a telemetric-based demand-responsive system in which travel dispatch centres use computer booking and automatic vehicle location systems. This information is then run through route-optimizing software that integrates the paratransit system with the public system, private taxis, and other services. Using a single voucher, an individual can order a route and then be directed to a series of interlocking transport options (115).
Taxis, minibuses, cycle rickshaws
Some large cities favour accessible private taxis. The taxi fleet in London, United Kingdom, for example, is 75% accessible (approximately
Chapter 7 Spinal cord injury and enabling environments
24 000 vehicles) (35). Although in low-income settings the cost of accessible taxis, as well as the infrastructure for a coordinated network, may be out of reach, lower-cost options such as rickshaws, minibuses and pedicabs can be cheaply adapted for people with disabilities (62). In some contexts, and for people with SCI who are able to transfer out of their chair, these forms of transport may be a good option. The minibus-taxis in South Africa, the chapa 100s in Mozambique, and the micros in Mexico all provide good curbto-curb mobility because of their smaller size and ubiquitous presence (62).
Education
The success of any of these strategies depends on the cooperation of knowledgeable and wellinformed transportation personnel. Safety lockdown systems in buses are of little use if the bus operator has not been trained to use them. Taxi drivers may have accessible vehicles, but may still avoid people in wheelchairs because of the perceived inconvenience. Even managers and policy-makers may not understand the importance of accessibility or the need for well-researched guidelines about low-cost access solutions (108). For many people in high-income countries, privately owned and adapted vehicles promote independent living, community participation and higher life satisfaction (118–120). Article 20 of the CRPD on personal mobility mandates access to mobility aids and devices to promote independence, and requires training and specialist staff. For those who can transfer into a car, and have a wheelchair that can be stowed, the cost of modified driving controls for a vehicle with automatic transmission may be relatively modest. In countries such as China, Malaysia, Thailand and Viet Nam, adapted motorcycles are a lower-cost popular solution for some people with paraplegia (121). For those who cannot transfer to a vehicle, wheelchair-accessible vehicles are a more costly solution, particularly for tetraplegic people (122), who may also require a friend or assistant to drive (30). Nevertheless, important innovations are being made in assistive technology policies in some countries that offer possible solutions such as subsidies and grants (123 –126). In Finland, for example, the purchase of adapted private vehicles is supported by a reduction in tax.
Public−private collaboration
Private transportation
Many transportation solutions rely on public− private collaboration. When the public sector faces cutbacks and formal public transportation degenerates, the gap is often filled by private taxis, minibuses or other vehicular services that compete for a market share. A case study of transportation in Georgia, Ghana and Kazakhstan indicated that once private services enter the transportation market they tend to displace the public system and, once entrenched, resist regulation or adherence to accessibility requirements (116). Increased consumer mobilization in collaboration with government has been successful in increasing accessible transportation in the Integrated Rapid Transit systems in Cape Town and Johannesburg, South Africa (111), as well as in the Dar es Salaam Rapid Transit Project in the United Republic of Tanzania, which fully integrates the public transport networks with private paratransit operators (113). As early as the 1970s, Brazil was a leader in the implementation of high-flow bus priority schemes, but economic constraints made it harder for cities to finance public infrastructure. Instead of downgrading accessible services, however, and stimulated by protests from groups representing elderly and disabled people, cities in Brazil have opted for public–private partnerships for bus rapid transit with full accessibility (117).
Public buildings Success in achieving accessibility cannot be reduced to one factor: enforceable laws and good policies need to be combined with strong lead157
International Perspectives on Spinal Cord Injury
ership, plus cooperation between sectors, and a commitment to progressive realization of appropriate accessibility standards. Structural and political measures such as legislation, regulations, building standards and policies are required to meet the complex challenge of achieving accessibility in public buildings, public spaces and private facilities such as shopping centres, stores, restaurants and hotels. However, political will and institutional support are also required to bring these components together. Most importantly, these measures need to be enforceable. Surveys show that, even when there are laws and policies governing accessibility, if they are voluntary, compliance is minimal (19–21). In countries such as Australia, Canada, Germany, India, New Zealand, the United Kingdom and the USA, where accessibility requirements are linked directly to antidiscrimination legislation with complaint provisions, a successful challenge made by an individual on grounds of inaccessibility can lead to fines or court orders. A young wheelchair user in the United Kingdom won a substantial award against a major bank in 2007 because the bank’s premises were inaccessible (127). Although such victories are important, using antidiscrimination legislation has drawbacks. Bringing a complaint is costly and, even when successful, victories do not always translate into systemic change. If antidiscrimination law recognizes the “undue hardship” defence to reasonable accommodation, accessibility changes from being a human rights issue to a question of cost-effectiveness, which is harder to argue and less clear-cut. Any coercive enforcement strategy may led to perverse results, such as partial compliance, by which the easiest and most visible accommodation is made − a ramp to the main entrance of a shopping centre, for example − but nothing else is changed, leaving the wheelchair-user stranded once inside the building (128). All access improvements are of course welcome, but expensive, and token accommodations can exhaust the allocated budget and fail to achieve 158
comprehensive accessibility. Accessibility solutions must also be practical, non-demeaning and user friendly. One study found that the designated “accessibility elevators” were all freight elevators – some of which were designed to carry garbage – and were located in inaccessible parts of the building (49). A more effective approach, although limited in scope, is Germany’s Act on Licences for Restaurants, Cafes and Bars that makes accessibility a condition of obtaining an operating licence. In light of the difficulties with the enforcement approach, some countries have tried inducement: ■ The “Warsaw without Barriers” campaign in Poland offers prizes for the most innovative and effective accessibility solutions in the city centre. ■ The “Map of Accessible Sofia” project in Bulgaria highlighted and advertised shops and facilities that were accessible. ■ An integral part of Ireland’s National Disability Strategy regarding public accessibility is to convince developers and builders that accessible buildings will provide them with a good return on their investment by improving market values, broadening potential usage, promoting a better image, and improving ease of use and safety (56) (see Box 7.2). ■ In the Canadian province of Ontario, the Association of Municipal Managers, responding to the provisions of the Accessibility for Ontarians with Disabilities Act of 2005, organized a “municipal accessibility toolkit” web site that showcased innovative ways of meeting requirements under the Act. The web site fostered a sense of competition between municipalities in identifying feasible ways of making buildings and public spaces accessible (129). A key indicator of success for any programme of public accessibility is the extent to which it is comprehensive and integrated. An accessibility programme for public buildings and spaces and
Chapter 7 Spinal cord injury and enabling environments
Box 7.2. Externally
An accessibility maintenance audit
Check that:
■■ designated parking bays are reserved for the use of disabled drivers; ■■ ramps and circulation routes are free from parked bicycles and other obstructions; ■■ circulation routes and escape routes from buildings to places of safety are on surfaces that are free of obstruction and well lit;
■■ areas being serviced or repaired are adequately protected and alternative routes are provided as necessary and are clearly marked;
■■ route surfaces are well maintained, clean, free of gravel, grit, mud, ice, snow and moss; ■■ battery supplies to platform lifts are permanently charged; ■■ aids to evacuation are in place. Entrances
■■ ■■ ■■ ■■
Check that: turning space at the top of ramps is kept free of obstruction; approaches to bells, letterboxes and door handles are free of obstruction; doors are easy to open, and closing devices are set at the minimum force needed to shut the door; entrance lobbies are free of obstruction, both permanent and temporary. Horizontal circulation within the building
Check that:
■■ door mats are recessed and, along with rugs, are securely fixed so as not to cause tripping; ■■ slip resistance of floor finishes is maintained, spillages are cleaned up promptly and appropriate cleaning agents and polishes are used; worn floor finishes are replaced; artificial lighting is at adequate levels; doors are easy to open, and door closers are set at the minimum force needed to close; doors are kept closed when not in use; wheelchair spaces in waiting rooms and elsewhere are kept free of obstruction; circulation routes are free of obstruction (e.g. toolboxes, boxes of files, vending machines, photocopiers); refuges are kept free of obstruction; adequate headroom is maintained throughout the building, with no trailing cables on floors or at heights below 220 cm; ■■ approaches to and egress from all lifts and stairs are kept free of obstruction.
■■ ■■ ■■ ■■ ■■ ■■ ■■ ■■
Source (56 ).
private buildings open to the public should strive to achieve full accessibility in manageable steps and avoid the “all-or-nothing” trap in which important initial improvements are deferred because complete accessibility is not immediately achievable. All components of the strategy – technical guidelines, professional knowledge and
expertise, legislative and policy framework, public awareness, political will and economic resources – need to be brought together into a single accessibility programme with a designated focal agency. The strategy should earmark funding for accessibility and should ensure that professional training institutions (for architecture, town planning, design and related professions) 159
International Perspectives on Spinal Cord Injury
are encouraged to teach about accessibility (14, 104). There should be formal liaison between people with disabilities, relevant professionals (rehabilitation professionals, politicians, developers, engineers, architects and planners) and other stakeholders to ensure continuing participation in the accessibility programme. The tragedy of a natural disaster can also present an opportunity to rebuild with accessibility in mind. In New Zealand the “Accessible Christchurch” project was launched in July 2011 to promote the needs of disabled people and to ensure the use of lifetime design standards in the rebuilding after the devastating earthquakes of that year. After the 2004 Indian Ocean earthquake and tsunami, housing in Sri Lanka was rebuilt to be more accessible (see Box 7.1). Thus, even governments facing economic constraints can make substantial moves towards accessibility, as has also happened in Haiti (130).
Cross-cutting recommendations ■ Adopt universal design as the conceptual approach for the design of buildings, transportation systems and homes that are accessible for people with SCI and promote awareness of accessibility at all levels. Develop locally appropriate accessibility standards, responding to local cultures, settings and needs. Then include accessibility as a criterion in planning and permissions in housing, the built environment and transport, and monitor compliance with accessibility laws to ensure that universal access standards are met. Directly involve organizations of people with SCI, as well as other disability organizations, in accessibility efforts, including the design and development of policies, products and services, the assessment of user needs, and the monitoring of progress. Make incremental improvements to environments, starting with basic barriers and slowly raising standards and goals as resources become available. Begin with crucial public buildings such as hospitals, government offices and schools. In resource-constrained contexts, strategic planning is needed to highlight priorities and to set out a series of ever-expanding goals, based on pilot studies to learn from experience what is successful and in what context. Raise awareness to reduce misperceptions and prejudice regarding SCI and other disabilities. Ensure that personnel working in public and private services are trained to provide access and to treat disabled customers and clients with respect and sensitivity.
■
■
■
Conclusion and recommendations The physical environment that surrounds people with SCI can either facilitate or impede their participation and inclusion in social, economic, political and cultural life. There is a broad spectrum of barriers, and most people with SCI experience at least some of these barriers to participation each day of their lives (3, 6). Improving accessibility improves the daily life of a person with SCI considerably. Yet accessibility also has value for others, such as older people, parents with strollers/pushchairs, and people with other restrictions (temporary or permanent) on their mobility. Accessibility helps everyone. Appropriate accessibility policies and laws, coupled with effective enforcement, are essential for the creation of a “culture of accessibility.” The following recommendations highlight measures that can help to create this culture. 160
■
Housing ■ Provide information on the cost-effectiveness and feasibility of home adaptation and retrofitting, and improve affordability by providing grants or tax incentives.
Chapter 7 Spinal cord injury and enabling environments
■ Provide public−private incentives to increase
the stock of accessible housing. Encourage associations of people with SCI, local authorities, housing cooperatives and other stakeholders to work with developers to design and build accessible housing. ■ Create a register of accessible housing to enable people with SCI to easily locate appropriate accessible housing.
■ Aim for complete continuity of accessibility throughout the travel chain by including improvements in pavements and roads, intersections, and access to buses, trams, trains and other vehicles.
Public buildings and spaces ■ Ensure compliance with standards for new or renovated public buildings and spaces by a combination of legal regulation, fines and licensing preconditions, together with public awareness. ■ Aim for a maximum circulation path for priority public buildings and facilities, as determined locally. ■ Establish an auditing process and designate a lead government agency to be responsible for implementing the accessibility programme.
Public transportation ■ Make accessibility in public transportation an integral part of a country’s overall transportation policy, monitored by a responsible agency with representation by people with mobility requirements and other access needs.
References United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 2. Fougeyrollas P. Documenting environmental factors for preventing the handicap creation process: Quebec contributions relating to ICIDH and social participation of people with functional differences. Disability and Rehabilitation, 1995, 17:145153. doi: http://dx.doi.org/10.3109/09638289509166709 PMID:7787197 3. Gray DB et al. A subjective measure of environmental facilitators and barriers for people with mobility limitations. Disability and Rehabilitation, 2008, 30:434-457. doi: http://dx.doi.org/10.1080/09638280701625377 PMID:17943511 4. Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord, 2010, 48:73-79. doi: http://dx.doi.org/10.1038/sc.2009.92 PMID:19636329 5. Noreau L, Fougeyrollas P, Boschen KA. The perceived influence of the environment on social participation among individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2002, 7:56-72. doi: http://dx.doi. org/10.1310/1UGA-EY2T-N6XP-1PHE 6. Whiteneck G et al. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1793-1803. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.024 PMID:15520974 7. Reinhardt JD, Post MWM. Measurement and evidence of environmental determinants of participation in spinal cord injury: a systematic review of the literature. Topics in Spinal Cord Injury Rehabilitation, 2010, 15:26-48. doi: http://dx.doi. org/10.1310/sci1504-26 8. WHO. World report on disability. Geneva, World Health Organization, 2011. 9. Dovey K. Home and homelessness. In: Altman I, Wener CM, eds. Home environments, human behavior, and environment: advances in theory and research. New York, NY, Plenum, 1985:33−63. 10. Heywood F. The health outcomes of housing adaptations. Disability & Society, 2004, 19:129-143. doi: http://dx.doi. org/10.1080/0968759042000181767 11. Rauh VA, Landrigan PJ, Claudio L. Housing and health intersection of poverty and environmental exposures. Annals of the New York Academy of Sciences, 2008, 1136:276-288. doi: http://dx.doi.org/10.1196/annals.1425.032 PMID:18579887 12. Mann WC et al. Environmental problems in the homes of elders with disabilities. The Occupational Therapy Journal of Research, 1994, 14:191-211. 13. Stark S. Creating disability in the home: the role of environmental barriers in the United States. Disability & Society, 2001, 16:37-49. doi: http://dx.doi.org/10.1080/713662037 1.
161
International Perspectives on Spinal Cord Injury
14. Steinfeld E, Shea SM. Enabling home environments: identifying barriers to independence. Technology and Disability, 1993, 2:69-79. 15. Toran K. Accessible housing database and manual. Berkeley, CA, World Institute on Disability, 2000 (http://www.wid.org/ publications/accessible-housing-database-and-manual, accessed 28 March 2012). 16. Forrest G, Gombas G. Wheelchair-accessible housing: its role in cost containment in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1995, 76:450-452. doi: http://dx.doi.org/10.1016/S0003-9993(95)80576-1 PMID:7741616 17. Moore W. NHS and local government try to stop introduction of “bed blocking” fines. British Medical Journal, 2003, 326:184. doi: http://dx.doi.org/10.1136/bmj.326.7382.184/g PMID:12549436 18. Eide AH, Benedicte I. Living conditions among people with disabilities in developing countries. In: Eide AH et al., eds. Disability and poverty: a global challenge. University of Bristol, The Policy Press, 2011, 55−70. 19. IDRM. Regional report of the Americas. Chicago, IL, International Disability Rights Monitor, 2004 (http://idrmnet.org/pdfs/ IDRM_Americas_2004.pdf, accessed 27 March 2012). 20. IDRM. Regional report of Asia. Chicago, IL, International Disability Rights Monitor, 2005 (http://idrmnet.org/pdfs/CIR_ IDRM_Asia_05.pdf, accessed 27 March 2012). 21. IDRM. Regional report of Europe. Chicago, IL, International Disability Rights Monitor, 2007 (http://idrmnet.org/pdfs/IDRM_ Europe_2007.pdf, accessed 20 April 2012). 22. Beresford R, Rhodes D. Housing and disabled children. York, Joseph Rowntree Foundation, 2008. 23. Imrie R. The role of the building regulations in achieving housing quality. Environment and Planning. B, Planning & Design, 2004, 31:419-437. doi: http://dx.doi.org/10.1068/b3056 24. Milner J, Madigan R. Regulation and innovation: rethinking inclusive housing design. Housing Studies, 2004, 19:727-744. doi: http://dx.doi.org/10.1080/0267303042000249170 25. Habinteg. Mind the step. London, Habinteg Housing Association, 2010. 26. Jacobs K et al. What future for public housing? A critical analysis. Hobart, Australian Housing and Urban Research Institute Southern Research Centre, 2010. 27. Hills J. Ends and means: the future roles of social housing in England. London, ESRC Research Centre for Analysis of Social Exclusion/ London School of Economics and Political Science, 2007 (CASE report 34). 28. Scanlon K, Whitehead C, eds. Social housing in Europe II: a review of policies and outcomes. London, London School of Economics, 2008. 29. Wehman P et al. Removing transportation barriers for persons with spinal cord injuries: an ongoing challenge to community reintegration. Journal of Vocational Rehabilitation, 1999, 13:21-30. 30. Scheer J et al. Access barriers for persons with disabilities: the consumer’s perspective. Journal of Disability Policy Studies, 2003, 13:221-230. doi: http://dx.doi.org/10.1177/104420730301300404 31. Wee J, Paterson M. Exploring how factors impact the activities and participation of persons with disability: constructing a model through grounded theory. Qualitative Report, 2009, 14:165-200. 32. United Spinal Association. Accessible air travel: a guide for people with disabilities. East Elmhurst, NY, United Spinal Association, 2012. (http://www.unitedspinal.org/disability-publications-resources/disability-publications/, accessed 26 March 2012). 33. Iwarsson S, Jensen G, Ståhl A. Travel chain enabler: development of a pilot instrument for assessment of urban public bus transport accessibility. Technology and Disability, 2000, 12:3-12. 34. Roberts P, Babinard J. Transport strategy to improve accessibility in developing countries. Washington, DC, World Bank, 2005. 35. IRTU. Economic aspects of taxi accessibility. Paris/Geneva, European Conference of Ministers of Transport/International Road Transport Union, 2001. 36. Stahl A. The provision of transportation for the elderly and handicapped in Sweden. Lund, Institutionen för Trafikteknik/Lunds Tekniska Högskola, 1995. 37. Wretstrand A et al. Injuries in special transport services – situations and risk levels involving wheelchair users. Medical Engineering & Physics, 2009, 32:248-253. doi: http://dx.doi.org/10.1016/j.medengphy.2009.07.022 PMID:19720552 38. Sapey B, Stewart J, Donaldson G. Increases in wheelchair use and perceptions of disablement. Disability & Society, 2005, 20:489-505. doi: http://dx.doi.org/10.1080/09687590500156162 39. Barf HA et al. Restrictions in social participation of young adults with spina bifida. Disability and Rehabilitation, 2009, 31:921-927. doi: http://dx.doi.org/10.1080/09638280802358282 PMID:19116807 40. Ahn HC et al. Architectural barriers to persons with disabilities in business in an urban community. The Journal of Burn Care & Rehabilitation, 1994, 15:175-179. doi: http://dx.doi.org/10.1097/00004630-199403000-00014 41. United States Access Board. Uniform Federal Accessibility Standards (UFAS). Washington, DC, United States Access Board, 2007 (http://www.access-board.gov/ufas/ufas-html/ufas.htm, accessed 27 March 2012).
162
Chapter 7 Spinal cord injury and enabling environments
42. Schneider M, Couper J, Swartz L. Assessment of accessibility of health facilities to persons with disabilities. Matieland, Stellenbosch University, 2010. 43. Allotey P et al. The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegia in Australia and Cameroon. Social Science & Medicine, 2003, 57:949-958. doi: http://dx.doi.org/10.1016/S02779536(02)00463-X PMID:12850119 44. Rimmer JH et al. Accessibility of health clubs for people with mobility disabilities and visual impairments. American Journal of Public Health, 2005, 95:2022-2028. doi: http://dx.doi.org/10.2105/AJPH.2004.051870 PMID:16254234 45. Williams R et al. Outdoor recreation participation of people with mobility disabilities. Selected results of the National Survey of Recreation and the Environment. Journal of Park and Recreation Administration, 2004, 22:85-101. 46. Xiang H et al. Risk of vehicle–pedestrian and vehicle–bicyclist collisions among children with disabilities. Accident; Analysis and Prevention, 2006, 38:1064-1070. doi: http://dx.doi.org/10.1016/j.aap.2006.04.010 PMID:16797463 47. Tight MR, Carsten OMJ, Sherborne D. Problems for vulnerable road users in Great Britain. Working Paper 292. Leeds, Institute for Transport Studies, University of Leeds, 1989. 48. Williams K, Savill T, Wheeler A. Review of the road safety of disabled children and adults. TRL Report TRL559. Wokingham, Transport Research Laboratory, 2002. 49. Martin LM. Wheelchair accessibility of public buildings in Utica, New York. The American Journal of Occupational Therapy., 1987, 41:217-221. doi: http://dx.doi.org/10.5014/ajot.41.4.217 PMID:3688133 50. Rivano-Fischer D. Wheelchair accessibility of public buildings in Al Ain, United Arab Emirates (UAE). Disability and Rehabilitation, 2004, 26:1150-1157. doi: http://dx.doi.org/10.1080/096382804100017214843 PMID:15371028 51. Scelza WM et al. Perceived barriers to exercise in people with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2005, 84:576-583. doi: http://dx.doi.org/10.1097/01.phm.0000171172.96290.67 PMID:16034226 52. Welage N, Liu KPY. Wheelchair accessibility of public buildings: a review of the literature. Disability and Rehabilitation. Assistive Technology, 2011, 6:1-9. doi: http://dx.doi.org/10.3109/17483107.2010.522680 PMID:20958181 53. Hamzat TK, Dada OO. Wheelchair accessibility of public buildings in Ibadan, Nigeria. Asia Pacific Disability Rehabilitation Journal, 2005, 16:115-124. 54. Waenlor W et al. Facilities for the disabled in the commercial districts of Bangkok − are they adequate? The Southeast Asian Journal of Tropical Medicine and Public Health, 2002, 33 Suppl. 3:164-165. PMID:12971501 55. UNESCAP. Disability at a glance 2009: a profile of 36 countries and areas in Asia and the Pacific. Bangkok, United Nations Economic and Social Commission for Asia and the Pacific, 2009. 56. NDA. Building for everyone: inclusion, access and use. Dublin, National Disability Authority, 2002 (http://www.nda.ie/cntmgmtnew.nsf/0/EBD4FB92816E8BB480256C830060F761/$File/Building_for_Everyone.pdf, accessed 28 March 2012). 57. UNAPD. Uganda National Action on Physical Disability. Accessibility standards. A practical guide to create a barrier-free physical environment in Uganda. Kampala, National Action on Physical Disability/Ministry of Gender, Labour and Social Development, 2010 (http://www.danskhandicapforbund.dk/index.php/download_file/-/view/835/, accessed April 11, 2012). 58. USA. National Commission on Architectural Barriers. Design for all Americans. A report of the National Commission on Architectural Barriers to Rehabilitation of the Handicapped. Washington, DC, US Government Printing Office, 1967 (http:// www.eric.ed.gov/PDFS/ED026786.pdf, accessed 28 March 2012). 59. Newman SD. Evidence-based advocacy using Photovoice to identify barriers and facilitators to community participation after spinal cord injury. Rehabilitation Nursing, 2010, 35:47-59. doi: http://dx.doi.org/10.1002/j.2048-7940.2010. tb00031.x PMID:20306612 60. World Bank. People with disabilities in India: from commitments to outcomes. Washington, DC, World Bank, 2009 (http:// siteresources.worldbank.org/INDIAEXTN/Resources/295583-1171456325808/DISABILITYREPORTFINALNOV2007.pdf?bcsi_ scan_C7A381BA8BD8A412=0&bcsi_scan_filename=DISABILITYREPORTFINALNOV2007.pdf accessed 28 April 2012). 61. Council of Canadians with Disabilities. Celebrating our accomplishments. Winnipeg, Council of Canadians with Disabilities, 2011. (http://www.ccdonline.ca/media/socialpolicy/booklet2011/celebrating-our-accomplishments.pdf?bcsi_scan_ C7A381BA8BD8A412=0&bcsi_scan_filename=celebrating-our-accomplishments.pdf, accessed 28 March 2012). 62. Venter C et al. Enhanced accessibility for people with disabilities living in urban areas. Ithaca, NY, Cornell University, 2002. (http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1258&context=gladnetcollect&seiredir=1&referer=http%3A%2F%2Fwww.google.ch%2Furl%3Fsa%3Dt%26rct%3Dj%26q%3Dpr%252Fint%252F248% 252F02%26source%3Dweb%26cd%3D1%26sqi%3D2%26ved%3D0CCMQFjAA%26url%3Dhttp%253A%252F%252Fdig italcommons.ilr.cornell.edu%252Fcgi%252Fviewcontent.cgi%253Farticle%253D1258%2526context%253Dgladnetcolle ct%26ei%3DXeOHT6LtGI-xhAeY49DSCQ%26usg%3DAFQjCNH_Z84ektdtheC2GJkOEpCIOWz__g%26sig2%3DJm3pxr0
163
International Perspectives on Spinal Cord Injury
kB7v7fNPOxCNYFg&bcsi_scan_97961A1EAF8C426F=8OF3I6CqR1a6YeGeQbpDFIMfwCxTAAAANYbiDQ==&bcsi_scan_ filename=viewcontent.cgi, accessed 13 April 2012). 63. Kunieda M, Roberts P. Inclusive access and mobility in developing countries. Washington, DC, World Bank, 2007 (http://siteresources.worldbank.org/INTTSR/Resources/07-0297.pdf, accessed 28 March 2012). 64. Clarke-Scott MA, Nowlan S, Gutman G. Progressive housing design and home technologies in Canada. In: Preiser WFE, Ostroff E, eds. Universal design handbook. New York, NY, McGraw Hill, 2001, 36.1–36.20. 65. Raheja G. Enabling environments for the mobility impaired in the rural areas. Roorkee, Indian Institute of Technology, 2008. 66. Imrie R, Kumar M. Focusing on disability and access in the built environment. Disability & Society, 1998, 13:357-374. doi: http://dx.doi.org/10.1080/09687599826687 67. Noreau L, Boschen K. Intersection of participation and environmental factors: a complex interactive process. Archives of Physical Medicine and Rehabilitation, 2010, 91 Suppl:S44-S53. doi: http://dx.doi.org/10.1016/j.apmr.2009.10.037 PMID:20801279 68. Reinhardt JD et al. Measuring impact of environmental factors on human functioning and disability: a review of various scientific approaches. Disability and Rehabilitation, 2011, 33:2151−2165 (E-pub 7 May 2011). 69. Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors. Archives of Physical Medicine and Rehabilitation, 2009, 90 Suppl:S22-S35. doi: http://dx.doi. org/10.1016/j.apmr.2009.06.009 PMID:19892071 70. Fänge A, Iwarsson S. Physical housing environment: Development of a self-assessment instrument. Canadian Journal of Occupational Therapy, 1999, 66:250-260. PMID:10641377 71. Fänge A, Iwarsson S. Accessibility and usability in housing: construct validity and implications for research and practice. Disability and Rehabilitation, 2003, 25:1316-1325. PMID:14617438 72. Green RJ. An introductory theoretical and methodological framework for a universal mobility index (UMI) to quantify, compare, and longitudinally track equity of access across the built environment. Journal of Disability Policy Studies, 2011, 21:219-229. doi: http://dx.doi.org/10.1177/1044207310384998 73. Stark S et al. Development of a measure of receptivity of the physical environment. Disability and Rehabilitation, 2007, 29:123-137. doi: http://dx.doi.org/10.1080/09638280600731631 PMID:17364763 74. Stark SL et al. The interrater reliability of the community health environment checklist. Archives of Physical Medicine and Rehabilitation, 2008, 89:2218-2219. doi: http://dx.doi.org/10.1016/j.apmr.2008.04.020 PMID:18996253 75. Heywood F. Money well spent: the effectiveness and value of housing adaptations, Bristol, The Policy Press, 2001. 76. Olsen RV, Ehrenkrantz E, Hutchings B. Creating supporting environments for people with dementia and their caregivers through home modifications. Technology and Disability, 1993, 2:47-57. 77. Stark S. Home modifications that enable occupational performance. In: Letts L, Rigby P, Stewart D, eds. Using environments to enable occupational performance. Thorofare, NJ, Slack, 2003. 78. Tually S, Beer A, Mcloughlin P. Housing assistance, social inclusion and people living with a disability. AHURI Final Report 178. Melbourne, Australian Housing and Urban Research Institute Southern Research Centre, 2011. 79. Fänge A, Iwarsson S. Changes in accessibility and usability in housing: an exploration of the housing adaptation process. Occupational Therapy International, 2005, 12:44-59. doi: http://dx.doi.org/10.1002/oti.14 PMID:15962699 80. Ratzka A. A brief survey of studies on costs and benefits of non-handicapping environments. Presentation at the International Congress on Accessibility in Rio de Janeiro, Brazil, June 1994. Stockholm, Independent Living Institute, 1994 (http://www. independentliving.org/cib/cibrio94access.html, accessed 28 March 2012). 81. Lansley P et al. Adapting the homes of older people: a case study of costs and savings. Building Research and Information: the international journal of research, development and demonstration, 2004, 32:468–483. doi:10.1080/0961321042000269429 doi: http://dx.doi.org/10.1080/0961321042000269429 82. Jones C. Review of housing adaptations including disabled facilities grants – Wales. Cardiff, Welsh Assembly Government, 2005 (http://new.wales.gov.uk/dsjlg/research/houseadaptreview/reviewe.pdf?lang=en, accessed 27 March 2012). 83. CMHC/SCHL. Homeowner residential rehabilitation assistance program. Homeowner RRAP. Ottawa, Canadian Mortgage and Housing Corporation (http://www.cmhc-schl.gc.ca/en/co/prfinas/prfinas_001.cfm, accessed 28 March 2012). 84. Tremblay KR, Birdsong C. Home adaptations for disabled persons. Fact sheet No. 9.529. Fort Collins, CO, Colorado State University, 2011 (http://www.ext.colostate.edu/pubs/consumer/09529.pdf, accessed 11 April 2012). 85. WHO. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. 86. Cities Alliance. The enabling environment for housing finance in Kenya. Civis: Shelter Finance for the Poor Series, 2003, issue 4. Washington, DC, Cities Alliance, 2003 (http://www.citiesalliance.org/ca/sites/citiesalliance.org/files/ Kenya+CIVIS+April03[1].pdf, accessed 27 March 2012).
164
Chapter 7 Spinal cord injury and enabling environments
87. Parker S, Fisher KR. Facilitators and barriers in Australian disability housing support policies: using a human rights framework. Disability Studies Quarterly, 2010, 30:3-4. 88. Hammerman CD, Bennett S. The disability housing market: opportunity for community development finance as the Americans with Disabilities Act turns 20. Community Development Investment Review, 2009, 5:88−96 (http://www.frbsf.org/ publications/community/review/vol5_issue3/hammerman_bennett.pdf, accessed 27 March 2012). 89. Scotts M, Saville-Smith K, James B. International trends in accessible housing for people with disabilities: a selected review of policies and programmes in Europe, North America, United Kingdom, Japan and Australia. Wellington, Centre for Research, Evaluation and Social Assessment, 2007 (http://www.chranz.co.nz/pdfs/working-paper-2.pdf, accessed 11 April 2012). 90. Brewerton J, Darton D, eds. Designing lifetime homes. York, Joseph Rowntree Foundation, 1997. 91. Mayor of London. London Accessible Housing Register: a good practice guide for social housing landlords. London, Mayor of London, 2011 (http://www.london.gov.uk/sites/default/files/LAHR%20Good%20practice%20guide%202011.pdf, accessed 28 March 2012). 92. Truesdale S, Steinfeld E. Visit-ability: an approach to universal design in housing. Buffalo, NY, Center for Inclusive Design and Environmental Access, 2002. 93. Schwartz AF. Housing policy in the United States: an introduction. New York, NY, Routledge, 2006. 94. Doble A, Sieniuc R. Integration and innovation: the Seabird Island project. ArchitectureBC. Journal of the Architectural Institute of British Columbia, 2003, Issue 10, 13–20. 95. European Commission. 2010: A Europe accessible for all. ETCAATS, e-learning for accessible tourism, 2003 (http://www. etcaats.eu/?i=etcaats.en.etcaatslibrary.852, accessed 6 March 2012). 96. CECODHAS. Housing organisations creating social capital. Exchange (published by CECODHAS Housing Europe – The European Federation of Public, Cooperative & Social Housing, Brussels), Spring 2009 (http://www.housingeurope.eu/www. housingeurope.eu/uploads/file_/exch%20spring_09en.pdf accessed 11 April 2012). 97. Randall B. Breaking down the barriers: social housing for people with disabilities in Europe. Brussels, European Liaison Committee for Social Housing, 2010. 98. Whitehead C, Scanlon K. Social housing in Europe. London, London School of Economics, 2007 (http://vbn.aau.dk/ files/13671493/SocialHousingInEurope.pdf, accessed 4 January 2012). 99. SELHP. Wheelchair homes design guidelines. Guidelines to achieve the necessary standards for wheelchair users’ dwellings. London, South East London Housing Partnership, 2008 (http://www.selondonhousing.org/Documents/080530%20 WC%20guide%20May%2008.pdf, accessed 28 March 2012). 100. South Australia. Housing options for people with a disability. Adelaide, Government of South Australia (http://www.sa.gov. au/subject/Community+Support/Disability/Adults+with+disability/Housing+and+home+assistance/Housing+options+f or+people+with+a+disability, accessed 28 March 2012). 101. Rwanda. Rwanda demobilization program builds homes for disabled ex-combatants (News release). Kigali, World Bank, 2009 (http://web.worldbank.org/WBSITE/EXTERNAL/COUNTRIES/AFRICAEXT/0,contentMDK:22275330~pagePK:146736~piPK:22 6340~theSitePK:258644,00.html, accessed 28 March 2012). 102. Leonardi M et al. Integrating research into policy planning: MHADIE policy recommendations. Disability and Rehabilitation, 2010, 32 Suppl 1:S139-S147. doi: http://dx.doi.org/10.3109/09638288.2010.520807 PMID:20874663 103. Wretstrand A et al. Older people and local public transit: mobility effects of accessibility improvements in Sweden. Journal of Transport and Land Use, 2010, 2:49-65. 104. Steinfeld E. Universal design in mass transportation. In: Preiser WFE, Ostroff E, eds. Universal design handbook. New York, NY, McGraw Hill, 2001:24.1–24.25. 105. Daamen W, De Boer E, De Kloe R. Assessing the gap between transport vehicles and platforms as a barrier for the disabled: use of laboratory experiments. Transportation Research Record, 2008, 2072:131-138. doi: http://dx.doi.org/10.3141/2072-14 106. Dejeammes M. Overview of technological developments for accessible transport systems and mobility in Europe. Paper delivered at the 12th International Conference on Mobility and Transport for Elderly and Disabled Persons (TRANSED), Hong Kong, 2−4 June 2010 (http://www.sortclearinghouse.info/cgi/viewcontent.cgi?article=1647&context=research accessed 28 March 2012). 107. Sage Traveling web site. Disabled travel to Europe. (http://www.sagetraveling.com accessed 2013). 108. Rickert T. Bus rapid transit accessibility guidelines. Washington, DC, World Bank, 2007 (http://siteresources.worldbank.org/ DISABILITY/Resources/280658-1172672474385/BusRapidEngRickert.pdf, accessed 20 April 2012). 109. Wright L. Planning guide: bus rapid transit. Eschborn, Deutsche Gesellschaft für Technische Zusammenarbeit, 2004 (http:// ecoplan.org/library/clinton/brt-planning%20guide-gtz.pdf, accessed 28 March 2012). 110. Imrie R. Disability and the city: international perspectives. London, Paul Chapman Publishing, 1996. 111. Walters J. Overview of public transport policy developments in South Africa. Research in Transportation Economics, 2008, 22:98-108. doi: http://dx.doi.org/10.1016/j.retrec.2008.05.023
165
International Perspectives on Spinal Cord Injury
112. Maynard A. Can measuring the benefits of accessible transport enable a seamless journey? Journal of Transport and Land Use, 2009, 2:21-30. 113. Schalekamp H et al. An international review of paratransit regulation and integration experiences. Lessons for public transport system rationalisation and improvement in African cities. Rondebosch, African Centre of Excellence for Studies in Public and Non-motorised Transport (ACET), 2010 (http://www.fut.se/download/18.1166db0f120540fe049800010991/ Mfinanga++international+review.pdf, accessed 28 March 2012). 114. Ståhl A. Adaptation of the whole travel chain – benefits and attitudes. Paper presented at the 23rd PTRC European Transport Forum, Coventry, United Kingdom, 1996. 115. International ITS. FLIPPER: improving the provision of flexible transport services. 2009 (http://www.itsinternational.com/sections/transmart/features/flipper-improving-the-provision-of-flexible-transport-services/?locale=en, accessed 11 April 2012). 116. Finn B. Market role and regulation of extensive urban minibus services as large bus service capacity is restored: case studies from Ghana, Georgia and Kazakhstan. Research in Transportation Economics, 2008, 22:118-125. doi: http://dx.doi. org/10.1016/j.retrec.2008.05.012 117. Lindau LA et al. Alternative financing for bus rapid transit (BRT): the case of Porto Alegre, Brazil. Research in Transportation Economics, 2008, 22:54-60. doi: http://dx.doi.org/10.1016/j.retrec.2008.05.018 118. Peters B. Driving performance and workload assessment of drivers with tetraplegia: an adaptation evaluation framework. Journal of Rehabilitation Research and Development, 2001, 38:215-224. PMID:11392654 119. Biering-Sørensen F, Hansen RB, Biering-Sørensen J. Mobility aids and transport possibilities 10−45 years after spinal cord injury. Spinal Cord, 2004, 42:699-706. doi: http://dx.doi.org/10.1038/sj.sc.3101649 PMID:15289807 120. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/ oti.228 PMID:17624872 121. Kohrman M. Motorcycles for the disabled: mobility, modernity and the transformation of experience in urban China. Culture, Medicine and Psychiatry, 1999, 23:133-155. doi: http://dx.doi.org/10.1023/A:1005455815637 PMID:10388946 122. Kiyono Y et al. Car-driving ability of people with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2001, 82:13891392. doi: http://dx.doi.org/10.1053/apmr.2001.26089 PMID:11588742 123. Wallace JF. A policy analysis of the assistive technology alternative financing program in the United States. Journal of Disability Policy Studies, 2003, 14:74-81. doi: http://dx.doi.org/10.1177/10442073030140020301 124. Dalto M. Maryland’s assistive technology loan program: successful outreach and partnerships. Journal of Disability Policy Studies, 2003, 14:91-94. doi: http://dx.doi.org/10.1177/10442073030140020601 125. Motability Operations. Your guide to getting a Motability car: Car Info Guide April 2011. London, Motability Operations, 2011 (http://www.motabilitycarscheme.co.uk/documents/PDFs/Car%20Scheme/Your%20guide%20to%20getting%20a%20 Motability%20car.pdf, accessed 28 March 2012). 126. Hammond M. The Utah Assistive Technology Foundation: program features and initiatives. Journal of Disability Policy Studies, 2003, 14:95-97. doi: http://dx.doi.org/10.1177/10442073030140020701 127. Royal Bank of Scotland Group Plc v Allen, 2009, EWCA Civ 1213. England and Wales Court of Appeal (Civil Division) Decisions (http://www.bailii.org/ew/cases/EWCA/Civ/2009/1213.html, accessed 20 April 2012). 128. McClain L. Shopping center wheelchair accessibility: ongoing advocacy to implement the Americans with Disabilities Act of 1990. Public Health Nursing (Boston, Mass.), 2000, 17:178-186. doi: http://dx.doi.org/10.1046/j.15251446.2000.00178.x PMID:10840287 129. AMCTO. Ontario municipal accessibility toolkit. Mississauga, Association of Municipal Managers, Clerks and Treasurers of Ontario, 2010 (http://www.accessiblemunicipalities.ca/home.asp, accessed 27 March 2012). 130. Iezzoni LI, Ronan LJ. Disability legacy of the Haitian earthquake. Annals of Internal Medicine, 2010, 152:812-814. PMID:20231547
166
Chapter 8 Education and employment
“My school teachers, friends and family are supportive because they know what I am capable of. Kids from other schools tease me just because I am in a wheelchair. Anyway they got over teasing me because I had some pretty good comebacks … If I wanted to change anything it would be people’s attitude towards disabled people, to treat us as normal people instead of feeling sorry for us or thinking we are dumb.” (Kiringawa, New Zealand) “Lecturers and administrative staff frequently failed to understand the necessity to schedule a lecture in a wheelchair-accessible venue. They had difficulty comprehending why approximately 300 students had to be inconvenienced to accommodate one student with a disability. Moreover, my fellow able-bodied students tended to perceive reasonable accommodation as unfair advantage… [Now] a Disability Officer has been employed at the university. Consequently, administrative staff, lecturers and students are continually sensitized with regards to the reasonable accommodation of students with disabilities in accordance with current South African legislation.” (Lizelle, South Africa) “When I got sick I was working delivering food to people’s houses. I thought I was going to lose my job because of the wheelchair. The owner of the shop was always telling me that I could keep my job. When I was able to come back to work, I became the person in charge of the shop: I control products, I attend to providers of products, I control the employees and also the money that comes in. Working makes me feel good, it allows me to relate to other people, to leave my house, to have a future. It really helps a lot to forget the worries caused by the injury.” (José, Argentina) “Six years ago, at the age of 30, tuberculosis of the spine made me a paraplegic. During the first year I felt down and depressed. I refused to do anything except lie in bed. One day, my mother pushed me to visit a neighbour. When I saw him lying in bed and could not move any limbs but he still smiled, I looked at myself and realized that I still had normal arms and hands and could do more. Thereafter, I started doing self-care by myself and attended a vocational course for disabled persons. Now I run a small electronics shop at home and earn about 3000 baht a month, which to me is sufficient for living.” (Boonpeng, Thailand) “Once I had accepted my disability and proven myself through sports as well, the door to life was opened. The desire to be employed was crucial. I received a great deal of assistance from the Employment Service, which found me a job in a government-owned company... I soon discovered that I wanted to achieve more and I started to look for another job. I got a job at a privately-owned company and acquired a lot of experience there. I was lucky to have come into an environment where people were judged by their ability not their disability. I became the managing director in a couple of years.” (Janez, Slovenia)
8
Education and employment Education is about becoming an active member of society, not just simple learning. Work is about belonging, not just about income. People with spinal cord injury (SCI) are entitled to participate in education and employment on an equal basis with others. Article 24 of the United Nations Convention on the Rights of Persons with Disabilities (CPRD) (1) emphasizes the need for governments to ensure equal access to an “inclusive education system at all levels” and to provide reasonable accommodation and individual support services to facilitate education. Article 27 prohibits all forms of employment discrimination, promotes access to vocational training and opportunities for self-employment, and calls for reasonable accommodation in the workplace. Education will be a step to employment and social participation for: ■ the child who was born with spina bifida and needs to navigate through all levels of education, from primary school to university and beyond; ■ the young adult who wishes to complete school or university after an acquired SCI; ■ the adult with acquired SCI who needs to retrain or upgrade skills to open the door to alternative careers. Inclusion in the general education system may require some environmental adaptations. A young person may also require counselling and other preparatory supports to overcome feelings of low self-esteem or self-consciousness that might stand in the way of returning to school or taking the next steps to higher education. Acquiring and keeping a meaningful job or returning to a pre-injury employment can also be a challenge for a person with SCI. Yet with vocational rehabilitation, counselling and preparation, with appropriate assistive technology, and with adjustments and accommodations on the part of the employer, people with SCI can perform most jobs. Work is not merely important as a source of economic security; it also provides a foundation for a meaningful life, offering social contacts and a sense of purpose and self-worth. Full participation in education and employment for people with SCI depends on dispelling misconceptions about the condition. When teachers, school administrators and fellow students learn about SCI, this knowledge facilitates the transition or return to education of the child or young adult with SCI. In the 169
International Perspectives on Spinal Cord Injury
employment context, assumptions about what a worker with SCI cannot do may well prevent a well-qualified individual from getting a job or, if employed, of having the respect of co-workers. Often the best way of confronting misperceptions about SCI is through direct experience of a person with SCI as a fellow student or co-worker, learning or working side-by-side.
Spinal cord injury and participation in education Children with disabilities are generally less likely to start school and often have lower rates of staying in school and of being promoted there (2). In low-income countries, there is limited access to education at all levels (3), and almost no access to higher education for young people with disabilities (4 – 6). Household data in Malawi, Namibia, Zambia and Zimbabwe showed that between 9% and 18% of children aged five years or older without a disability had never attended school, but between 24% and 39% of children with a disability had never attended one (7–10). A study from Cambodia estimates the non-attendance figure to be as high as 45% (11). In many low-income countries, the general lack of educational resources makes it very difficult to accommodate children with SCI or any other disability (12). A persistent lack of funding leads to chronic understaffing, absence of medical assistance, and lack of equipment and facilities (13). Evidence from Kenya, for instance, highlights barriers to higher education ranging from the lack of available post-secondary institutions to physical inaccessibility, lack of transition services from secondary education, attitudinal barriers such as stigma, and the generally poor economic background of disabled students (4). The challenges facing low- and middle-income countries to include all children with disabilities in education are formidable, but progress can be made, especially by listening more closely to the voices of students with disabilities and their parents (14). 170
Although evidence is available on educational participation for children and young adults with disabilities, it is rare for these data to be disaggregated to provide information about SCI. Sometimes it is possible only to infer from data on “orthopaedic disabilities” or even “physical disabilities” to obtain any sort of picture. The majority of children with SCI return to school after injury and rehabilitation, which creates distinct service needs (15). Since SCI incidence rates are high for people in their late teens and early twenties (see Chapter 2), the focus has been on returning to secondary and post-secondary education (16). The paediatric age group starting in education consists almost exclusively of children with spina bifida (17), who have special challenges that distinguish them from those who are returning to school after injury. However, the distribution of age at injury is shifting upwards, due to the rise in late-onset traumatic and non-traumatic SCI, (16, 18, 19), with the implication that older adults with SCI may be returning to education or training to develop new skills to return to work in a different kind of job than the one they had before. Relatively more is known about children with spina bifida than about other cohorts because these children have complex educational needs linked to the variety of associated physical, mental and emotional issues they may experience. Spina bifida accompanied by hydrocephalus may lead to limitations in cognitive functioning in at least one third of affected children, including attention and concentration difficulties (20) that require, where available, special educational resources (17, 21, 22). Recent studies have also noted the presence of depression and anxiety among young adults with spina bifida, which contributes to poor educational performance (23). Despite these challenges, a longitudinal study of children with spina bifida in the USA indicated that nearly half had successfully reached tertiary-level education (24). This supports evidence that indicates a steep decline in drop-out rates during the period
Chapter 8 Education and employment
of increased resource funding targeted at these children in the USA (25). For most children and young adults with SCI, the challenge is navigating a return to secondary or post-secondary school. Aside from some research with small samples in Europe and the USA (26 –29), there is little reliable information about overall success or failure of the school experience of children with SCI, as compared to children with other disabilities or the nondisabled population. Qualitative research from the United Kingdom has highlighted how return to school can be a traumatic transition (30). Return was most successful when it began as early as possible, and preferably while the child was still undergoing rehabilitation in a hospital. All students agreed that the major problems were physical accessibility and the staff’s lack of training in how to accommodate the child’s needs for full participation in all school activities, including sports and school trips. Transition to post-secondary education at universities and colleges generally seems to be less of a challenge, possibly because the students are more mature, have had more experience with their SCI and know what they need. In the USA, for example, 45% of young adults with mobilityrelated impairments go to college or university after secondary education, compared to 53% of the general student population (31). One study found that 82% of participants went on to college (32). The United States National Longitudinal Transition Study 2 had similar findings, but also showed a difference from the 77% of students who are blind or deaf who continue to post-secondary education (31). In Europe the numbers are comparable, although the rates of college attendance of mobility-impaired students has been decreasing in Europe in recent years (33).
confront, it is important to begin by distinguishing three groups: children with spina bifida; children and young adults who are returning to school after rehabilitation; and adults who return to education to acquire the skills and knowledge for new employment prospects after SCI.
Legislation and policy Article 24 of the CRPD gives clear and detailed guidance on what is required at the legislative, policy and programming levels to give effect to the right to education at all levels and for all people with disabilities (1, 12). Some high-income countries have legislation and policy in place to implement the principles of educational inclusion, including general antidiscrimination provisions such as the Disability Discrimination Act in the United Kingdom, to address individual complaints of educational exclusion. However, legislation is more effective if it is proactive. In Denmark, for instance, legislation requires the Ministry of Education to provide the compensatory aids that people with disabilities require to follow the same educational courses as their peers so that they can succeed academically. In France, schools are required to take positive measures for students with disabilities and to adapt academic pathways physically as well as pedagogically (33). In low- and middle-income countries there are often legislative barriers, including laws that explicitly permit children with disabilities to be excluded from education (34 –36). UNESCO has concluded that the biggest obstacle to inclusive education in these countries is the failure to enact a legislative and policy framework that is supportive of inclusive education (37). Even in countries such as South Africa, where the government has taken the lead in identifying obstacles to fully accessible education, the absence of legislation and funded programming has allowed little progress (38). Top-down approaches that fail to take into account the local situation in rural communities are less likely to succeed (39). 171
Addressing barriers to education To understand and address the myriad barriers to education that children and adults with SCI
International Perspectives on Spinal Cord Injury
Countries need to take practical steps to prepare the ground for a workable education policy, as well as making a general commitment to the rights of disabled children to be educated. These steps include: identifying the number of disabled children and their needs; developing strategies for making school buildings accessible; revising curricula, teaching methods and materials to meet these needs; and developing educational capacity, both by providing educators trained in the needs of children with disabilities and by tapping into the resources of parents and communities. All of these measures must be supported by appropriate and sufficient financing (36).
a coordinated effort is needed involving teachers, school administrators and parents to assist these children by fostering intrinsic motivation and independence as a basis for building positive social relationships in mainstream schools (43, 44). Although the situation for children with spina bifida in the poorest parts of the world can be extremely difficult, progress has been achieved in East Africa by bringing together community supports and parents in a culturally sensitive manner (45).
Returning to school after injury Returning to school as soon as possible after injury must be a primary goal of rehabilitation, and a commitment to the continuity of education should be part of the rehabilitation goal-setting process (26, 32, 46, 47). Education has consistently been found to be associated with increased community participation, employment, higher levels of independent living, and higher life satisfaction in adults who experienced SCI during their primary or secondary schooling years (48, 49). The best option for any child is to go to mainstream school. Home schooling or individual instruction alone or besides regular classwork is a second-best option that should be considered only if a child with SCI needs more educational support or misses instruction because he or she has to leave classes too frequently for physical or occupational therapy (29). A recent study on the school experience of children with SCI in London (30), emphasized the following key factors of success: ■ early contact between child, parent and school personnel, with the involvement of rehabilitation professionals; ■ adaptations and accommodations, planned and carried out in advance of the child’s arrival and in non-stigmatizing ways, to ensure complete access to all areas of the school; ■ full-access programming, by which school officials ensure that the student is included
Support for children with spina bifida Approximately half the children and young adults with a myelomeningocele accompanied by hydrocephalus are likely to be put into special education programmes and to have poor educational outcomes, while the remainder have outcomes similar to students without disabilities (17). The challenge is to create conditions within the normal school setting that optimize learning for all children with spina bifida. Despite the medical complications to which children with spina bifida are prone – including seizures and bladder and bowel incontinence − in well prepared and resourced educational settings, these students can access primary and secondary education and can have graduation rates equal to those of the general population of children (24, 40). More research is needed on how to provide a supportive environment for children with spina bifida. Work is also needed to build self-confidence and independence among these children (41). A small-scale study about integrating self-management, goals development and other independence skills in a week-long camp showed that efforts to overcome lack of self-confidence can be extremely successful (42). Most children with spina bifida can successfully participate in mainstream schools and achieve good educational outcomes. Thus 172
Chapter 8 Education and employment
in all school activities, including in particular physical education classes (50) and school trips; ■ education on spinal cord injury and associated conditions provided on-site for all staff, together with age-appropriate educational programmes for school peers, to encourage the acceptance of difference. This and similar studies (29, 32, 51) have confirmed that mechanisms need to be put in place for students and their parents to raise concerns and deal with problems in an informal setting (e.g. an evening social event) well before the student enters school. Rehabilitation professionals should attend these events, since evidence suggests that their encouragement to the child is an important factor for successful re-entry into school and participation in school life (52, 53). Peer mentoring has also been shown to be a good way to motivate young adults to return to or continue with their education after an injury (54). Overprotection should be discouraged (30).
Transitions from school For children with disabilities, transition from school to post-secondary education is more stressful than for other children, due to challenges concerning adaptation and accommodation to new settings and situations. People with multiple sources of support adjust to transition better than those without (25). The availability of appropriate assistive technology is also essential for smooth transition (55). Parents can play an important motivating and confidencebuilding role during transition. Peer mentoring to address the trauma of transition for children with SCI (54) and web-based resources that the family and child can use together to increase confidence and boost independence (41) are promising developments for emotional and psychological preparation. In its 2004 summary report (56), the United States National Center on Secondary Education
and Transition (NCSET) outlined some potential solutions for major transition challenges, namely: ■ promoting students’ self-determination and self-advocacy by incorporating career development skills in the general education curriculum; ■ ensuring that students have access to the general education curriculum by employing universal design principles to make classrooms, curricula and assessments usable by the largest number of students possible without the need for additional accommodations or modifications; ■ increasing the school completion rates of students with disabilities by developing methods and procedures for identifying and documenting research-based information on best practices in dropout prevention and intervention; ■ increasing informed parent participation and involvement in educational planning, life planning and decision-making; ■ using methods such as cross-training between general education teachers and those in special education to promote collaboration between general education and special education in student assessment, individual education plans and instruction. An OECD report on issues of transition to universities and colleges stated that bridging the gap between secondary and tertiary (or higher) education requires cooperative efforts from both levels of education (33): ■ Secondary schools must provide counselling and other resources, which have been shown to be highly effective (57). ■ Colleges and universities need to revisit their admissions strategies and education accommodation to facilitate the access and success of students with disabilities. Transition should be coordinated both centrally by university-wide disability support services and within the relevant university 173
International Perspectives on Spinal Cord Injury
departments, and advance planning for adjustments should be put in place. Relevant adjustments include note-takers, tutors, technology aids, physical adaptations to classrooms and independent living support (31, 58, 59). With regard to low- and middle-income countries, the Consortium for Research on Educational Access, Transitions and Equity (CREATE), was established in 2006 as a partnership between research institutions in Bangladesh, Ghana, India, South Africa and the United Kingdom. The first CREATE monograph set out a research agenda based on a classification of “zones of exclusion” of children with disabilities – from total exclusion to entry into secondary school but at risk of dropping out before completion – and made the case for education policies targeted to these different situations (60). A follow-up monograph highlighted the specific teaching challenges and potential strategic responses across Africa (14), and pointed out how gender disadvantage complicates the challenge faced by children with SCI.
ficulties who cannot get to school by themselves because the distances are too great or because of uneven rural pathways or flooded roads during the rainy season (61). Many of these barriers can be overcome with better policy and planning (33, 65, 66). Even where resources are constrained, it is possible to make a difference by prioritizing the removal of physical barriers over a period of time, as in Kenya where the government plans by 2015 to begin the task of installing ramps and other accommodations in its local schools (67). In 2003, the city of Lisbon, Portugal, launched a programme called Escola Aberta (“open school”) that included a wide-ranging strategy for gradually eliminating physical barriers in primary schools (68).
Reasonable accommodations Although needs vary considerably, some children with SCI can only achieve the level of independence required to attend school and get the full benefit of an education with some form of accommodation. This may be a classroom assistant or may take the form of assistive technologies ranging from low-technology devices such as pencil grips to high-technology tools such as optical character recognition systems or to a highly sophisticated robotic arm for children with limited upper-body control (69). All these can enhance, or simply make possible, a child’s educational performance and classroom participation. The best source of information about what is needed and what technology actually works is the experience of people who use the equipment. A Canadian project offers a discussion guide to help peers share information on different assistive technology solutions (70) and to enable newly disabled people to think through the issues. Although computers and other technologies will greatly benefit a child with SCI, this often requires a well-trained teacher or classroom assistant to help the child to use them (29, 71).
Reducing physical barriers Research has shown that barriers to basic mobility are key factors restricting the participation of pupils with paraplegia in South Africa (61) and children with spina bifida in Malaysia (62). In the United Republic of Tanzania, access is difficult because many schools are built on plinths to protect them during the rainy season, and, inside the school, toilet facilities are not accessible and doorways are rarely wide enough to accommodate wheelchairs (63). In the United Kingdom, a study highlighted barriers such as steps or ramps that were too steep, lack of appropriate toilets, and lack of reserved parking spaces that were all obstacles preventing students with wheelchairs from using classrooms, dining halls, libraries and sports facilities (30). Access detours and delays hinder students from reaching classes on time (64). Inaccessible transportation is particularly burdensome for children with mobility dif174
Chapter 8 Education and employment
Funding education and accommodations Accommodations, whether equipment or support personnel, require secure funding. In high-income countries, there are many potential sources of funds set aside for students with disabilities, e.g. government education grants or loans, state-run scholarships and supplementary funding, university competitive scholarships, private educational funds and scholarships, and private insurance (33). In the USA, 78% of the budget for disability support for tertiary education went to financing scholarships or loans for people with disability (33), and a variety of federal plans exist from which educational assistive technology can be funded (72). In the United Kingdom, the Disabled Students Allowance provides direct tax-exempted payments for specialist educational equipment, personal assistants and extra travel costs (73). In Ireland, government funds are distributed to colleges and universities, which are primarily responsible for allocating these funds to students (74). Another approach is to ensure that the extra costs of a student with SCI are offset by individual loans or partial bursaries awarded on a case-by-case basis, as in France and Norway, with provisions for these loans to be converted into outright grants should the graduating student be unable to repay the loan (33). In low-income countries, specialized funding arrangements are unlikely to be available for the student with disabilities. Although studies have shown that integrating children with disabilities into regular schools is cost-effective, even taking into account the extra costs of accommodations (see the review of studies in (75)), many countries are not able to take advantage of these potential savings. In principle, low-income countries at least have the benefit of being able to see how various funding strategies have worked, or failed to work, in high-income settings (76). Uganda, for example, pieced together components of several inclusive education funding
approaches from Europe and the USA to produce good results for its disabled children (37). Adopting funding approaches from high-income countries may not always be the best approach, however, since the primary goal of education in a rural setting may be to prepare individuals with disabilities for living and working in their communities, which may mean that the best funding arrangements are more closely tied to the needs of that community (39).
Social support For any young person in secondary or higher education, independence usually depends on the presence of a network of social support from families, friends and peers. The disruption caused by SCI may mean that a young person loses contact with friends, and the time away from school can lead to a general detachment from society. Social support generally is a determinant of life satisfaction, health and even mortality in people with SCI (77). Informal mentoring systems have been shown to be helpful to children with SCI as they return to their schools and social life (54, 59), and interaction with peers with SCI is especially important (78). Advocacy groups, SCI support groups and NGOs are vital components of a social network that can, by sharing common experiences, play an important role in assisting students and their families. In the United Kingdom, the Back Up Trust runs a mentoring service for people with SCI, and matches mentors with those who need advice about adjusting to life with SCI, going back to school and other issues (79). A similar role is played by other groups in other countries, including some that have limited resources to spend on any aspect of living with a disability. India’s National Resource Centre for Inclusion, which is a part of Able Disabled All People Together (ADAPT), is based in Mumbai from where it has provided support and mentoring to children with disabilities since 1972.
175
International Perspectives on Spinal Cord Injury
Addressing attitudinal barriers The obstacles that children and young adults experience when they return to school from rehabilitation, or when they enter school for the first time with spina bifida or paediatric SCI, are not merely physical and institutional, they are also attitudinal. Successful educational participation requires that ignorance and misperceptions about what SCI means need to be dispelled. Children and young adults with SCI, and their families, also need to learn about SCI and what they should expect when they return to school, or move from secondary to post-secondary education.
mation about self-management (41). SCI support groups exist in many countries and share information and common concerns that are important to families. Parents may be understandably worried about their child’s safety at school or whether their child will be socially accepted by peers (27) but, since overprotection can further isolate the child with SCI (26), parents should be advised by rehabilitation professionals and teachers to seek out support groups to allay their fears. Attitudes of principals and teachers are crucial in facilitating and managing an inclusive environment, and attitudes can be influenced positively by well-planned information and supportive strategies (39, 50, 61, 82). Teacher attitudes are generally more positive towards students with mobility impairments than towards students with intellectual impairments (83). Very basic “disability awareness” programming for teachers, administrative staff and students has been found, in a review of the literature, to be almost as important for successful social integration as an adapted setting (84). This has been confirmed in Botswana and Lebanon (85, 86). For example, the Center for Assistive Technology and Environmental Access at the Georgia Technology College of Architecture offers free online courses for high-school mathematics and science teachers so that they may learn about classroom accommodations, adapted tests and laboratories, assistive technology, and laws and policies (70). Lacking understanding of what SCI entails, or how to be supportive, both teachers and pupils would benefit from exposure to basic information about disability in general and SCI in particular. There are easily accessible resources that can be used, both for basic information about disability in the schoolroom and for SCI issues in particular. For example, UNESCO has produced a toolkit for creating inclusive learning-friendly environments (87), while OECD offers resources that describe the steps that need to be taken by teachers, school administrators and students to support diversity in the school environment (88).
Teachers, school administrators and peers
When contemplating returning to school, children with SCI may worry that they will not be accepted by their peers, and there is some evidence that children may have difficulty coping with their SCI and may experience symptoms of maladjustment, anxiety and depression (23, 80), or even a sense of loss of control (81). If not addressed, this may progress into increased isolation, loneliness, absence of friends, anxiety about the future and, as a result, poorer educational outcomes (27). Children with SCI coming back to school need to know about features of the school they are entering, and the regular activities they will be participating in − i.e. things that matter to them, rather than what matters to parents or teachers (51). This means that input from children with SCI on what they need to know may be more important than what their parents, teachers or other professionals believe they ought to know. Later in their educational careers, students with SCI, like their peers, will need counselling and career services that will facilitate their transition to higher education, and then to employment (53). Children with SCI and their families can profit from web-based resources that provide basic medical information about SCI or spina bifida, including in particular practical infor176
Students with spinal cord injury and their families
Chapter 8 Education and employment
Teachers play a direct and decisive role in making inclusive education a reality. This is especially true of physical education instructors, who often face the challenge of integrating a child with serious impairments into a mainstream physical education class in a manner that balances the goal of integration, exercise activities that are appropriate for functional limitations, and safety considerations. A Swedish study showed that success in meeting this challenge is a result of adequate training, support from the school administration and adequate resources (50). There is now growing acceptance that teacher training institutions must ensure that new teachers are trained to teach effectively in classrooms where there are students with disabilities (89). There is also evidence that teachers will more readily assimilate information about a child’s disability, and will use that information to help integrate the child into school activities, when the information is not presented in terms of diagnostic labels e.g. child with spina bifida, but in terms of functional problems and assets that will make a practical difference to how they teach the child (83). Generally, it is not basic medical information about SCI that is required, apart from health conditions such as autonomic dysreflexia that may be life-threatening for some individuals with SCI (15). Teachers should also be made aware of the health complications linked to spina bifida or those associated with concomitant traumatic brain injury (19). Teachers need to know that children with SCI often struggle for self-determination and independence and that they will not readily be able to talk openly about these problems (90). This is a phenomenon that rehabilitation therapists should be prepared for (78). Classroom assistants, who often interact with children with disabilities more directly in primary school, should receive training and information about SCI and its implications, including its emotional and psychological impact (30).
Spinal cord injury and participation in employment Most people with SCI can work and can be productive members of society if there are appropriate work accommodations where required. Unfortunately, many people with SCI and other disabilities are excluded from work and livelihood opportunities, with the result that they and their families live in poverty and are marginalized from the mainstream of society. This exclusion is a hardship for people with SCI, but it is also problematic for other reasons: ■ Exclusion is a waste of valuable human resources. Estimates of the economic impact of the unemployment and underemployment of people with disabilities in representative low- and middle-income countries range from 3% to 5% of gross domestic product (91). ■ Employment is a key rehabilitation outcome for people with SCI (92) because it is positively associated with adjustment to SCI, life satisfaction, a sense of purpose, mental stimulation, social contact and well-being (93 –96). ■ Low income associated with unemployment or underemployment is linked to higher mortality rates after SCI (77, 97) and generally poorer health (93, 98–100). A recent systematic review of 50 studies on SCI and unemployment found that the average global employment rate of people with SCI was only 37%, although the figure for having been employed at some point post-injury was 68% (101). The average current employment rate of people with SCI by continent was highest in Europe (51%) and lowest in North America (30%). For the OECD countries, these averages are comparable to the unemployment rates of people with the most serious disabilities (102). Another review of the literature on the return to work of people with SCI around the world for the years 2000−2006 reported return-to-work levels ranging from 21% 177
International Perspectives on Spinal Cord Injury
to 67%, and overall employment levels ranging from 11.5% to 74% (103). The wide range of results in both systematic reviews is mainly attributable to differing definitions of employment. Although there are good data on the employment rates of people with SCI in high-income countries, equivalent data for low- and middleincome countries are sparse (104) and reveal variable employment rates. Some studies find approximately half the respondents with SCI returning to work: 57% in Malaysia (105), 50% in Bangladesh (106) and 41% in India (107). However, evidence from other settings is much worse. For example, a follow-up study on 136 people with SCI admitted to the National Rehabilitation Centre in Zimbabwe showed that only 13% of the participants, only one of whom had tetraplegia, were employed (108). Seemingly good statistics may obscure the fact that available work may often pay poorly (109). Provision of support with return to work is a major factor in differential outcomes. Because non-traumatic SCI is more likely to be late onset, employment-related information applies mostly to traumatic SCI. The exception is young people with spina bifida, who are especially hard hit by unemployment. Although information is available only from Europe and the USA, the rates of full-time or part-time employment of young people with spina bifida range from 36% to 41%, as compared to 75% for those without disabilities (40, 44) or those with other serious chronic conditions (110). A large study in the Netherlands found a relatively high rate of employment (62.5%), but many respondents were in sheltered employment settings rather than in the general workforce (43). While SCI employment data for low- and middle-income countries is scarce, it is clear that, even in high-income settings, unemployment is very high for people after SCI. More research is needed on the causes of persistent unemployment, as well as to distinguish, if possible, the barriers to employment that are associated with SCI from the barriers associated with disability in general (111). 178
Addressing barriers to employment There is good evidence from high-income countries on determinants of employment and the factors that prevent people with SCI from returning to work after injury or from acquiring their first job (96, 103, 112–115). Although gender is not a reliable determinant of employment (92, 98), age at injury and level of pre-injury education are stable predictors (48, 98, 116 –120). The younger, more educated and less injured a person is, and the sooner the person can get to work after the injury, the more likely it is that the person will be employed (120, 121). Race is also a reliable determinant in the USA, with whites being far more likely to be employed than other groups (81, 120 –123). The more serious the injury and the more functional difficulties a person has, the less likely it is that the person will be employed (48, 98, 117, 124 –127). For all levels of injury severity, employment rates improve over time (81, 128–130). Nevertheless, secondary conditions, especially when requiring hospitalization, reduce the chances of job acquisition and job retention (100, 122, 131). However, the main barriers to employment are environmental rather than demographic, biomedical or psychological (132). The literature review and evaluation of reported evidence on determinants of return to work conducted by the Spinal Cord Injury Rehabilitation Evidence (SCIRE) project rank discrimination and inaccessibility at the workplace as the most important negative factors for employment (115). Even studies that emphasize health issues such as functional inability to perform job tasks, lack of stamina or lack of endurance, point out that these issues are only problems if the nature of the work or workplace cannot be modified to enable the person with SCI to perform the preferred job (98, 133, 134). Overall, research has consistently shown that people with SCI are often prevented from working because of the lack of accessible transporta-
Chapter 8 Education and employment
tion to work (43, 103, 115). This is a worldwide problem, especially in rural areas, which consistently have higher unemployment of people with SCI than urban areas (34, 131, 135, 136). The causes of unemployment of people with SCI are complex, as are the causes of failure to achieve economic self-sufficiency. There is considerable variability across studies, and predicting return to work or access to financial support is challenging because, even if all obstacles preventing a young person from returning to work are overcome, a seemingly trivial environmental or logistic obstacle at the workplace may make it impossible to do so (112, 114). However, the four categories of employment and economic security predictors seem to be: vocational training and employment supports; misconceptions about, or discrimination against, people with SCI; workplace accommodation; and securing economic self-sufficiency.
Vocational training and supported employment Vocational rehabilitation, which is a multidisciplinary approach that aims to return a worker to gainful employment or to facilitate participation in the workforce, usually includes more specialized services such as vocational guidance and counselling, vocational training, and job placement to optimize the chances of employment (137). It has been shown to be highly effective for return to work and first-time “work-ready” preparation for a wide variety of disabling conditions (138, 139). Functional recovery after traumatic SCI may take up to 12 months after injury, and the individual with the injury will need time to deal with medical needs and adjustment to family and home. It may seem unrealistic to begin active vocational planning during inpatient comprehensive rehabilitation or in the first months after discharge (113). Yet there is strong evidence that vocational rehabilitation that begins early and is coordinated with efforts to promote
adjustment to life in the community has a better chance of enabling the individual to obtain and sustain employment (48, 138, 139). Vocational goals and expectations of a productive lifestyle should therefore be incorporated into the overall rehabilitation plan at an early stage to prepare for the more concentrated efforts of vocational counsellors later (140). Unfortunately, even in high-income countries, vocational rehabilitation and counselling is not always available for people with SCI (96, 141), and the case for the need for these services has to be made at the policy level. People with SCI may need specialized services that address specific ergonomic and technical issues that they may confront (142, 143). There is also strong evidence in the case of SCI that an important factor in return to work is the availability of job placement services provided by vocational counsellors: particularly job search and networking; making job descriptions available to match job requirements with the individual’s functional strengths and weaknesses; job application skills; and preparation for job interviews (118). An important part of these services is the provision of information about employment opportunities, including vocational and educational prerequisites, to help with vocational decision-making (94, 143). The need for general social support for people with SCI is recognized as a significant factor for successful re-entry into employment (132). After a traumatic injury, many believe that they are no longer capable of performing tasks necessary for work (124, 144, 145). Psychological factors ranging from reduced sense of control of life and selfesteem to depression may make re-employment harder (146 –148). Serious mental illnesses such as depression may require professional help, but in most cases psychosocial support from SCI peers, family members and close friends can be highly effective in encouraging the individual to continue the journey back to employment (149, 150). This is very relevant in low-resource settings where there is generally more reliance on informal support networks (109).
179
International Perspectives on Spinal Cord Injury
For children and adolescents, especially those with spina bifida, vocational counsellors must be integrated into a large programme of transition from school to work. Although the ultimate goal is to develop strategies that will lead to employment in the future, typically the primary focus is to keep young people in school so that they can stay on the path to employment (26, 54). To meet the challenge of returning to work for people with serious injury-related disability such as SCI, there are two overall types of vocational rehabilitation programmes in highincome countries. Transitional programmes offer streamlined services focused on helping people to obtain and hold competitive jobs, also known as “supported employment” (143, 151). The emphasis is on training in job skills,
job readiness counselling, and job placement services, with post-placement support and follow-up by vocational counsellors (96, 128, 152 , 153). Transitional services are by their nature resource-intensive and costly, but these costs are considerably reduced if the services are begun as soon as possible and are integrated with other rehabilitation services (96, 137). The Kaleidoscope vocational rehabilitation programme described in Box 8.1 is an example of such a programme for SCI. Supported employment programmes build on the job-seeker’s strengths and abilities. These programmes tailor support to address specific needs in searching for and selecting suitable employment, provide on-the-job support and advocacy with the employer as the individual
Box 8.1.
Kaleidoscope, Burwood Hospital, Christchurch, New Zealand
Kaleidoscope is an early-intervention vocational rehabilitation programme that started in response to the high unemployment rate among people with SCI. Kaleidoscope is based on the supportive employment model and has four characteristics, namely: 1. Early access to people with serious spinal injuries and their families. This generally begins within the first week or two of an acute admission. Spinal injuries often result in very lengthy hospitalization so there is ample opportunity to get together with those who are injured and their families. The primary focus during this time is, of course, a person’s medical rehabilitation. However, valuable foundations are laid for future vocations, and expectations are raised that continuing employment is both realistic and likely. 2. Detailed career planning. This gives people the opportunity to design a future path that they are motivated to follow. If it is no longer possible for people to do their previous jobs, they may be unsure of what the future holds. Planning a person’s employment future on the basis of motivation, experience, skills and the many thousands of job possibilities that exist helps to give that person the desire to get back into full and active participation in the workforce. 3. Post-placement support. This support is central to ensuring that the transition back into the workforce is as smooth as possible. A key aim of the support provided is to empower the employee sufficiently so that the requirement for ongoing regular support will gradually cease. However, all parties will be clear that support will be provided should it be required at any time or if an ongoing support regime becomes necessary again. 4. A motivated and supportive local business community. The local business community has a huge amount to offer people who wish to return to the workforce after a serious injury or illness. Kaleidoscope has a business network of over 40 local businesses in a variety of industries. These employers have made themselves available to meet face-to-face to share information on their industry and to help identify a job search strategy that will assist people to gain a position within that industry. The Oho Ake (“awaken” and “rise up”) programme is based on the same principles and includes people with chronic SCI who have experienced unemployment. Source (154).
180
Chapter 8 Education and employment
begins to fit into the job, and provide ongoing long-term support throughout the employment (155). The key to the approach is individualized services, given that each person with SCI is different in terms of functioning, job skills, experience and transportation requirements, and requires different employment accommodations. Although highly individualized assessment is time-consuming, there is some evidence that this approach not only makes it possible for the professional counsellor to better tailor services to individual needs but it also empowers people with SCI to take control over their lives (151). Although the supportive employment model is primarily used in high-income countries, one of the most successful examples of it is the Centre for the Rehabilitation of the Paralysed in Bangladesh (see Box 8.2). The sheltered workshop model of employment is the second of the two types of vocational rehabilitation programme. It is the traditional approach where people with severe disabilities are given tasks to perform in a workshop setting that is managed by vocational specialists. This option is sometimes perceived to be more realistic for people with complex needs and is often offered as
the first step towards open employment. Box 8.3 gives an example of such a programme in operation in southern India. Sheltered workshops that are not directly linked to programmes for transition to competitive employment foster segregation and are therefore not the optimal approach to realizing the human rights of people with SCI. SCI peer counselling has long been advocated as an essential component of vocational programmes (140). Although early vocational approaches were controlled by rehabilitation professionals, research has suggested that a high level of professional support could be intrusive and that more coordination is needed between the clients and the businesses and other workplaces that they were hoping to enter. The role of vocational rehabilitation professionals is to liaise between employer and client, and to counteract any employer prejudice against employing people with severe disabilities (141, 157). Rehabilitation professionals should emphasize the employment goals of the person with SCI, assess the workrelated functional capacity of the individual in view of available support, and accept that work career planning is an ongoing process that does not end with the attainment of a specific job (143).
Box 8.2.
Centre for the Rehabilitation of the Paralysed (CRP) in Bangladesh
Bangladesh is a poor country, with nearly half of its 150 million people living below the poverty line. There is no general social security network, and most people with disabilities receive no financial aid to assist them with their impairment-related expenses. The Centre for the Rehabilitation of the Paralysed (CRP), an NGO specializing in the rehabilitation of people with SCI, was founded in 1979 in response to the desperate need for rehabilitation services for people with spinal injury. CRP has since developed into an internationally respected organization that provides a full range of supportive employment services, including physical and psychological rehabilitation, job placement counselling, vocational retraining, assistance in securing microcredit loans for self-employment, planned reintegration into the community, ensuring that home environments are safe, and educating local residents on the nature and consequences of SCI. CRP’s headquarters is in Savar. It also runs two residential vocational retraining centres (CRP-Gonokbari for women and girls, and CRP-Gobindapur for outpatients and community-based services) as well as a centre for medical, therapy and diagnostic services in the capital Dhaka. CRP operates 13 community-based rehabilitation projects that are involved in accident and disability prevention programmes as well as advocacy and networking activities to promote SCI issues. Additionally CRP runs awareness-raising and publicity campaigns to break down the barriers and stigma against people with SCI and other disabilities. Sources (34, 106, 156).
181
International Perspectives on Spinal Cord Injury
Box 8.3.
Sheltered workshops for veterans with SCI in India
Two paraplegic rehabilitation centres at Kirkee and Mohali, with 109 and 34 beds respectively, are run for the rehabilitation of paraplegic and tetraplegic ex-servicemen. The centres are charitable trusts that are funded by Kendriya Sainik Board (which is part of the Department of Ex-Servicemen in the Ministry of Defence) and the Ministry of Social Justice and Empowerment. All individuals in these centres are given vocational training in skills such as weaving, knitting, tailoring and candle-making. They are employed in on-site sheltered workshops and given small monthly salaries so they can be relatively economically independent. Sheltered workshops at these centres are considered to be permanent or semi-permanent vocational placements for these individuals because it is assumed that they would be unable to find jobs in the community. An ex-serviceman’s activity at a workshop is to be considered a job and a place to go to work every day. The centres also provide medical treatment, physiotherapy, physical exercise, sports and computer training to enable inpatients to become self-reliant. Source (107 ).
Overcoming misconceptions about spinal cord injury Misconceptions about SCI and the ability of people with SCI to work in competitive employment, especially among employers and co-workers, have often been cited as a significant factor that negatively affects the employment prospects of people with disabilities in general and those with SCI in particular (114, 124, 140, 152 , 158, 159). A study from Bangladesh reported that some employers generally perceived potential employees with SCI to be “sick” and “less productive” (34). In the Netherlands, 57% of young adults with spina bifida reported that they had problems finding employment because of negative attitudes among employers (43), a result confirmed by similar findings in other studies (25, 41, 160). In a classic study of workplace discrimination, nondisabled candidates were 1.78 times more likely to be hired than their disabled counterparts. It is argued that the more visible the physical problem (e.g. the presence of a wheelchair), the more likely it is that employers will be reluctant to hire (161). Overcoming employment discrimination requires commitment to antidiscrimination legislation, plus legal processes for redress. Laws such as the Americans with Disabilities Act 1990 (as amended in 2007) are increasingly common around the world. A study of the application of 182
this act in the case of SCI has shown that, although the success rate is very low, people with SCI tend to be more successful in their complaints than other disability groups (162). Antidiscrimination legislation is not the only way forward. Research reveals a trend towards very positive employer attitudes about workers with disabilities, but this has not always translated into positive attitudes when specific workers are assessed for jobs (163, 164). A follow-up study found that employers who had experience of people with disabilities, or whose knowledge of disability had increased with disability awareness programmes conducted by vocational counsellors, hired people with disabilities far more readily (158). This suggests that employment outcomes for people with disabilities can be enhanced if the rehabilitation community plays an active role in providing support to employers with less experience of disability. A recent study found, contrary to expectation, that perceived discrimination was not associated with a lower likelihood of returning to work, which suggests that people with SCI may be growing more aware of, and more successful in overcoming, discriminatory and prejudicial attitudes of employers (145).
Ensuring workplace accommodations Successful return to work depends on workplace accommodation (95, 99, 101, 103, 113, 165).
Chapter 8 Education and employment
Though accommodation begins with issues of physical accessibility, the need is more extensive and includes integration of assistive technology into employment, and modifications to the nature or location of the work. Practical examples of SCI-relevant accommodations derive from people with SCI themselves: in a recent qualitative study of 266 people with mobility and sensory problems who had entered employment, a total of 1553 specific and detailed accommodations was identified (166). Ample information is available on ways to make the workplace physically accessible, including free web-based resources that provide very detailed and practical information, such as the USA-based Jobs Accommodation Network (JAN), a portal to practical information for innovative and tested accommodations for individuals with impairments, including those resulting from SCI (167). Since 2004, JAN has also conducted a study of employers to determine the costs and benefits of worksite modifications, consistently demonstrating the benefits to employees and showing that the benefit employers receive from workplace accommodations far outweighs their cost (167). Examples of workplace modifications relevant to the needs of people with SCI include: wheelchair accessibility from the point of entry (in all weather conditions) to the workstation and all other areas needed for the job tasks; widened doorways and path clearance for wheelchair users; modifications to the workstation, including height-adjustable desks or tables; accessible filing systems and other work areas; and accessible amenities such as toilets, conference areas, and lunch and rest areas (168). For workers with SCI, accommodations for wheelchairs are crucial, but for most jobs it is of equal importance to have access to assistive technology that overcomes both lower-body and upperbody functional limitations associated with SCI. In a study of people with SCI who are working, a majority reported using adapted telephones, magnifiers and other assistive technologies to perform
their job functions, saying that these technologies substantially increased their productivity and self-esteem (144). In particular, many studies have shown that people with SCI who are employed use a computer at work more often than the general population (169–172). This makes the availability and accessibility of such equipment essential for a successful return to work. For those with upper-body difficulties, recent developments such as a head-movement image-controlled mouse, for which the user with SCI wears a headset and moves his or her head to control the movement of the mouse cursor, may be needed. For assistive technology to be useful for a person with SCI, it must be fully integrated into the workplace. In part this is a matter of physical accessibility, but vocational rehabilitation specialists have increasingly noticed that it is also important to make sure that co-workers and employers understand the need for the specialized equipment, that they provide users with enough information about how to use it, and that they know why technical assistance is required to maintain or repair it so that the user’s work is not disrupted (169, 173). Sometimes sophisticated technology is neither available nor needed, such as when the job can be performed by providing an assistant to help with job-related tasks. In some cases that role can be provided by service animals that are trained to carry and bring objects to make it easier to perform basic job tasks (174). Since the injury is very likely to have some impact on the kinds of tasks that can be performed, “reasonable accommodation” may also include making changes to the nature of the job. The manner in which the tasks required are performed may be changed, the job may become part-time, or the work schedule may be modified, including allowing the worker to leave when necessary for bladder and bowel management or for rest. A recent European study showed that, while 60% of young people with SCI returned to work after their injury, nearly all of them took advantage of job modifications, including reduction of time pressure, flexible work schedules and, in some cases, cutting work hours by up to half (141). 183
International Perspectives on Spinal Cord Injury
An era of technological and economic changes, together with an emphasis on work-life balance, means that people with disabilities are not the only ones who wish to work differently. In some countries, governments are actively encouraging programmes of flexible working hours and job-sharing, which can equally benefit people with SCI (152). Telework, in which work is conducted from a remote location using a variety of information and communication technologies, can be a way of overcoming transportation obstacles, physical environmental barriers and health limitations such as fatigue created by SCI or secondary conditions (170). The advantages of telework need to be weighed against the potential danger of social isolation and the risk of employment segregation. Teleworking might also undermine efforts to make transportation systems, buildings and communities more accessible to people with mobility limitations. More research into benefits and disadvantages in this area is needed (111).
Self-employment In many low-income countries, self-employment in the form of small-scale arts and crafts manufacturing or selling of farm produce is often a source of income for people with disabilities and is a relevant work option for people with SCI (109). In high-income countries too, self-employment has potential benefits for the people with SCI: working from home or in the immediate community avoids barriers of access and transportation, workplace discrimination and negative co-worker attitudes, and allows for flexible working hours and conditions. Evidence suggests that people with mobility and musculoskeletal problems in particular are likely to be self-employed (159). The disadvantages of selfemployment are isolation and lack of skills development, lower income levels, and the fact that the cost of employment-related assistive devices has to be borne entirely by the individual (171). The most significant barrier to self-employment is the initial financial burden of starting 184
the business, whether capital or for equipment or training costs. An extensive study of self-employment options in Europe found that, because individuals with disabilities were generally viewed by private financial lenders as poor risks, they turned to their families for funds. In countries such as the United Kingdom, people with disabilities were able to take advantage of tax credits and other disability-related income supports, and sometimes small business loans available through employment agencies (159). However, even in Canada and the United Kingdom, which offer relatively generous financial assistance in the form of grants, loans and tax credits, there is low take-up because of the lack of accessible information (159, 175). Access to funding to set up a small business can prove to be a major challenge for people living with SCI in low-income settings. In these countries microfinance arrangements have been instrumental in enabling people with disabilities to earn a living. Microfinance refers to provision of standard financial services, including business loans, to individuals and small businesses otherwise lacking access to affordable banking. An extensive review of literature and practice from Africa and Asia concluded that people with disabilities have not been able to benefit equally from existing microfinance programmes (176, 177). Handicap International in 2006 conducted a thorough study of access to microfinance organizations across the poorer countries of Africa and Asia and found that only 0.5% of the clients of these funding organizations had disabilities (178). Pointing to successes with Asociación de Discapacitados de la Resistencia Nicaragüense in Nicaragua and with the International Committee of the Red Cross in Afghanistan and elsewhere, the report argues that the involvement of NGOs with strong capacity-building power is needed to resolve this complex problem. Other research argues that community-based saving and lending groups have the potential to increase the employment rates of people with disabilities, and that disability organizations can play an
Chapter 8 Education and employment
important role by joining forces with these community financial groups (177).
Social protection Disability is strongly linked with extreme poverty worldwide, and SCI is no exception. An Australian study estimated the average annual income of employed people with tetraplegia to be approximately half of the mean annual earnings of the general population (179). In a Malaysian study, post-injury earnings for the 50% who had jobs were considerably less than what they earned before (105). In southern India most of SCI patients were found to be living below the poverty line (109, 135), and in Nepal less than half of the study population earned any income at all a few years after discharge from rehabilitation (180). In Zimbabwe, a study reported that one third of those who survived SCI had no income whatsoever and relied on family and friends for financial support (108). In Ghana, it is reported that people with mobility restrictions have resorted to illegal begging because of the lack of employment options or social services (181). Apart from these isolated studies, very little is known about how many people with SCI are economically self-sufficient. It is likely that many people rely on social security programmes, disability pensions, income support, family assistance, or in-kind transfers. Social safety nets are vulnerable to economic downturns and are lacking in most of the poorer parts of the world. In some countries, including India, there are benefits restricted to government service workers or military personnel, which help people from those sectors who develop SCI (182, 183). Most high-income countries, and an increasing number of middle-income countries such as Brazil, Namibia and South Africa, have two forms of social protection. One is temporary and means-tested to sustain income until permanent employment is re-established (e.g. unemployment insurance, temporary disability benefits). The other is a permanent form of social assistance
or welfare when the individual is deemed to have a permanent disability of such severity that he or she is no longer employable. In the Netherlands, for example, unemployment insurance is compulsory. As a result, 97% of people with SCI and without a post-injury job are funded, and most of those who do have employment remain entitled to a supplementary social benefit based on 70% of their salary before SCI (127). In Canada, by contrast, a long-term disability insurance (DI) scheme will pay 65−70% of a person’s salary for two years post-injury until an alternative job is found. If there is no possibility of returning to work, this payment will continue for an extended period and will eventually be replaced by some form of social assistance (152). The downside of social protection schemes is that they can operate as a “benefit trap”. This refers to a situation where, because income maintenance and other programmes are meanstested (or simply end once a permanent job is acquired), people with SCI who have continuing health and rehabilitation needs, including the costs of assistive devices, are reluctant to take jobs. The reason for this is that the income they would receive, minus the health care and other costs caused by the SCI, would be less than if they stayed in the temporary income replacement programme (184). There is conflicting evidence about how extensive a problem this is. A large study in the USA showed that, for people with SCI not in employment, higher disability benefits were strongly associated with a lower chance of being employed in subsequent years (129). DI beneficiaries do not appear to price themselves out of the labour market. Half of them would want a wage that is 80% or less of the last wage earned before receiving DI. It is estimated that approxi mately 7% of long-term DI benefi ciaries might return to work if they search for jobs and are offered a wage with a distribution mean of 80% of their last wage (185). The most straightforward, if costly, solution to the benefit trap is to modify the means test so that an individual with high health care and 185
International Perspectives on Spinal Cord Injury
impairment costs retains some portion of the benefit after having secured employment. The perceived difficulty with this solution is that, when there is widespread unemployment, people will seek to take advantage of disability support to secure health care costs. OECD has recommended radical changes that would greatly benefit people with SCI (102, 186), arguing that disability benefits should be a single component of a larger “participation package”, adapted to individual needs and capacities and designed primarily to return people to work. The package would include rehabilitation and vocational training, job search support, and cash or in-kind benefits for preparation to return to work. The package must directly involve employers, who should be given a substantial incentive to hire these workers and a disincentive to fire them if the need for further workplace accommodations is discovered later. In this way, disability benefits would be transitory payments acting as a step towards full employment. The OECD-recommended changes to disability and employment policy would probably benefit people with SCI more than other disability groups. The typical person with traumatic SCI is young and, prior to injury, was either preparing for a career or starting one. Vocational rehabilitation, as a transitory package of work-related services, complements the OECD proposal.
efit from education. Older adults, who may want to retrain for new jobs, also require customized support and accommodations from training institutes, vocational or technical schools, colleges and universities. People with SCI, where qualified, can perform the requirements of many jobs and be productive. However, obtaining employment and staying employed are often made more difficult by: lack of access to relevant education, training, vocation rehabilitation and job placement services; lack of access to financial resources for self-employment opportunities; disincentives and delays created by the structure of some social protection benefit schemes; the absence of workplace accommodation and assistive technology; and employers’ and co-workers’ misperceptions about what a person with SCI can and cannot do. Many individuals and groups – from families, school administrators, teachers, vocational rehabilitation and other specialists to governments, employers and SCI organizations – need to be involved and to coordinate with each other to overcome the obstacles to full participation in education and employment. Critical areas that need to be addressed by these stakeholders are summarized in the following recommendations.
Enhancing educational participation ■ Ensure that laws and policies guarantee that children with SCI can enrol and attend any level of schooling appropriate to their needs and abilities, and on an equal basis with others. ■ Ensure that college and university admission strategies do not exclude potential applicants with SCI and that they have in place strategies for making the environment accessible. ■ Plan the return to school after injury, bringing together education and rehabilitation staff. ■ Ensure the availability of health, rehabilitation and support services, as required by the child.
Conclusion and recommendations Education is an essential step towards employment and full membership in society but, for children with spina bifida or young adults with SCI returning to school, full participation in mainstream education can be difficult because of barriers, both physical and attitudinal. Institutional and school-level change is required to remove these barriers and to provide accommodation and support services so that every child and young adult with SCI can fully ben186
Chapter 8 Education and employment
■ Ensure that teachers are trained to meet the
needs of children with disabilities. ■ Where feasible, provide peer mentoring to the child returning to school or making a transition between levels of education. ■ Include parents and children in decision-making. ■ Use SCI organizations to provide information and awareness on issues relating to SCI.
■ ■ ■
Securing employment and economic self-sufficiency ■ Enact, enforce and publicize effective antidiscrimination legislation, so that employers
■
are aware of their duties not to discriminate and to provide reasonable accommodation. Ensure access to vocational rehabilitation to help people with SCI prepare for work and to address psychosocial concerns. Promote access to microfinancing or other sources of credit for people with SCI who wish to develop a self-employment opportunity. Depending on the setting, provide social protection that supports individuals and families affected by SCI but does not act as a disincentive to work. Collect statistics on the employment experiences of people with SCI and other disabilities.
References United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 2. WHO. World report on disability. Geneva, World Health Organization, 2011. 3. UNESCO. Strong foundations: early childhood care and education. Education for All Global Monitoring Report, 2007. Paris, United Nations Educational, Scientific and Cultural Organization, 2006. 4. Kochung JE. Role of higher education in promoting inclusive education: Kenyan perspective. Journal of Emerging Trends in Educational Research and Policy Studies, 2011, 2:144-149. 5. Filmer D. Disability, poverty, and schooling in developing countries: results from 14 household surveys. The World Bank Economic Review, 2008, 22:141-163. doi: http://dx.doi.org/10.1093/wber/lhm021 6. UNESCO. Policy guidelines on inclusion in education. Paris, United Nations Educational, Scientific and Cultural Organization, 2009. 7. Loeb ME, Eide AH, eds. Living conditions among people with activity limitations in Malawi: a national representative study. Oslo, SINTEF, 2004. 8. Eide AH et al. Living conditions among people with disabilities in Zimbabwe: a representative, regional study. Oslo, SINTEF, 2003. 9. Eide AH, van Rooy G, Loeb ME. Living conditions among people with disabilities in Namibia: a national, representative study. Oslo, SINTEF, 2003. 10. Eide AH, Loeb ME, eds. Living conditions among people with activity limitations in Zambia. Oslo, SINTEF, 2006. 11. VanLeit B, Channa S, Rithy B. Children with disabilities in rural Cambodia. An examination of functional status and implications for service delivery. Asia Pacific Disability Rehabilitation Journal, 2007, 18. 12. Rieser R. Implementing inclusive education: A Commonwealth guide to implementing Article 24 of the UN Convention on the Rights of People with Disabilities. London, Commonwealth Secretariat, 2012. 13. Zhang E. The protection of rights of people with disabilities in China. Asia Pacific Disability Rehabilitation Journal, 2007, 18:49-89. 14. Croft A. Including disabled children in learning. Challenges in developing countries. Create Pathways to Access, Research Monograph, No. 26. Brighton, University of Sussex, 2010 (http://www.create-rpc.org/pdf_documents/PTA36.pdf, accessed 20 April 2012). 15. McGinnis K, Lunn M. School re-entry after pediatric spinal cord injury. SCI Nursing, 2004, 21:222-223. PMID:15794424 16. DeVivo MJ, Chen Y. Trends in new injuries, prevalent cases, and aging with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:332-338. doi: http://dx.doi.org/10.1016/j.apmr.2010.08.031 17. Barf HA et al. Educational career and predictors of type of education in young adults with spina bifida. International Journal of Rehabilitation Research, 2004, 27:45-52. doi: http://dx.doi.org/10.1097/00004356-200403000-00006 1.
187
International Perspectives on Spinal Cord Injury
18. DeVivo MJ. Epidemiology of traumatic spinal cord injury: trends and future implications. Spinal Cord, 2012, 50:365-372. doi: http://dx.doi.org/10.1038/sc.2011.178 19. Hagen EM et al. Traumatic spinal cord injury and concomitant traumatic brain injury: a cohort study. Acta Neurologica Scandinavica, Supplementum, 2010, 190:51-57. doi: http://dx.doi.org/10.1111/j.1600-0404.2010.01376.x 20. Burmeister R et al. Attention problems and executive functions in children with spina bifida and hydrocephalus. Child Neuropsychology, 2005, 11:265-283. doi: http://dx.doi.org/10.1080/092970490911324 21. Fletcher JM et al. Spinal lesion level in spina bifida: a source of neural and cognitive heterogeneity. Journal of Neurosurgery Pediatrics 3, 2005, 102:268–279. 22. Wasson CM, Bannister CM, Ward GS. Factors affecting the school placement of children with spina bifida. European Journal of Pediatric Surgery, 1992, 2 Suppl. 1:29-34. doi: http://dx.doi.org/10.1055/s-2008-1063496 23. Bellin MH et al. Correlates of depressive and anxiety symptoms in young adults with spina bifida. Journal of Pediatric Psychology, 2010, 35:778-789. Epub: 30 October 2009 doi: http://dx.doi.org/10.1093/jpepsy/jsp094 24. Bowman RM et al. Spina bifida outcome: a 25-year prospective. Pediatric Neurosurgery, 2001, 34:114-120. doi: http://dx.doi. org/10.1159/000056005 25. Sawin KJ, Betz CL, Linroth R. Gaps and opportunities: an agenda for further research, services, and program development in spina bifida. Pediatric Clinics of North America, 2010, 57:1041-1057. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.020 26. Graham P, Weingarden S, Murphy P. School reintegration: a rehabilitation goal for spinal cord injured adolescents. Rehabilitation Nursing, 1991, 16:122-127. doi: http://dx.doi.org/10.1002/j.2048-7940.1991.tb01196.x 27. Mulcahey MJ. Returning to school after a spinal cord injury: perspectives from four adolescents. The American Journal of Occupational Therapy, 1992, 46:305-312. doi: http://dx.doi.org/10.5014/ajot.46.4.305 28. Castle R. An investigation into the employment and occupation of patients with a spinal cord injury. Paraplegia, 1994, 32:182-187. doi: http://dx.doi.org/10.1038/sc.1994.33 29. Dudgeon BJ, Massagli TL, Ross BW. Educational participation of children with spinal cord injury. The American Journal of Occupational Therapy, 1997, 51:553-561. doi: http://dx.doi.org/10.5014/ajot.51.7.553 30. Knight A et al. The school lives of children and young people with a spinal cord injury. Report to the Back-Up Team. London, Thomas Coram Research Unit, University of London, 2008. 31. Newman L, Malouf D. The post-high school outcomes of youth with disabilities up to 4 years after high school. Menlo Park, CA, SRI International, 2009. 32. Massagli TL, Dudgeon BJ, Ross BW. Educational performance and vocational participation after spinal cord injury in childhood. Archives of Physical Medicine and Rehabilitation, 1996, 77:995-999. doi: http://dx.doi.org/10.1016/S0003-9993(96)90058-1 33. OECD. Inclusion of students with disabilities in tertiary education and employment, education and training policy. Paris, Organisation for Economic Co-operation and Development, 2011. 34. Momin AKM. Impact of services for people with spinal cord lesion on economic participation. Asia Pacific Disability Rehabilitation Journal, 2004, 15:53-67. 35. OECD. Students with disabilities, learning difficulties and disadvantages: policies, statistics and indicators. Paris, Organisation for Economic Co-operation and Development, 2007. 36. Bines H, Lei P, editors. Education’s missing millions: including disabled children in education through EFA FTI processes and national sector plans. Milton Keynes, World Vision UK, 2007 (http://www.worldvision.org.uk/upload/pdf/Education%27s_ Missing_Millions_-_Main_Report.pdf, accessed 16 May 2012). 37. UNESCO. Guidelines for inclusion: Ensuring access to Education for All. Paris, United Nations Educational, Scientific and Cultural Organization, 2005. 38. Dube AK. The role and effectiveness of disability legislation in South Africa. London, Disability Knowledge and Research Programme, 2005 (http://www.dfid.gov.uk/r4d/PDF/Outputs/Disability/PolicyProject_legislation_sa.pdf, accessed 20 April 2012). 39. Engelbrecht P, Oswald M, Forlin C. Promoting the implementation of inclusive education in primary schools in South Africa. British Journal of Special Education, 2006, 33:121-129. doi: http://dx.doi.org/10.1111/j.1467-8578.2006.00427.x 40. Liptak GS et al. Youth with spina bifida and transitions. Health and social participation in a nationally represented sample. The Journal of Pediatrics, 2010, 157:584–588.e1. 41. Holmbeck GN et al. Family perspective: how this product can inform and empower families of youth with spina bifida. Pediatric Clinics of North America, 2010, 57:919-934. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.012 42. O’Mahar K et al. A camp-based intervention targeting independence among individuals with spina bifida. Journal of Pediatric Psychology, 2010, 35:848-856. doi: http://dx.doi.org/10.1093/jpepsy/jsp125
188
Chapter 8 Education and employment
43. van Mechelen MC et al. Work participation among young adults with spina bifida in the Netherlands. Developmental Medicine and Child Neurology, 2008, 50:772-777. doi: http://dx.doi.org/10.1111/j.1469-8749.2008.03020.x 44. Zukerman JM. Adolescent predictors of emerging adulthood milestones in youth with spina bifida. Journal of Pediatric Psychology, 2011, 36:265-276. doi: http://dx.doi.org/10.1093/jpepsy/jsq075 PMID:20855288 45. Miles M. Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society, 2002, 17:643-658. doi: http://dx.doi.org/10.1080/0968759022000010425 46. Webster G, Kennedy P. Addressing children’s needs and evaluating rehabilitation outcome after spinal cord injury: the child needs assessment checklist and goal-planning program. The Journal of Spinal Cord Medicine, 2007, 30 Suppl. 1:S140S145. PMID:17874699 47. Anderson CJ et al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine, 2004, 27 Suppl. 1:S98-S106. PMID:15503711 48. Anderson CJ, Vogel LC. Employment outcomes of adults who sustained spinal cord injuries as children or adolescents. Archives of Physical Medicine and Rehabilitation, 2002, 83:791-801. doi: http://dx.doi.org/10.1053/apmr.2002.32742 49. Vogel LC et al. Unique issues in pediatric spinal cord injury. Orthopedic Nursing, 2004, 23:300-308. doi: http://dx.doi. org/10.1097/00006416-200409000-00004 50. Jerlinder K, Danermark B, Gill P. Swedish primary-school teachers’ attitudes to inclusion – the case of PE and pupils with physical disabilities. European Journal of Special Needs Education, 2010, 25:45-57. doi: http://dx.doi. org/10.1080/08856250903450830 51. Asbjørnslett M, Hemmingsson H. Participation at school as experienced by teenagers with physical disabilities. Scandinavian Journal of Occupational Therapy, 2008, 15:153-161. doi: http://dx.doi.org/10.1080/11038120802022045 52. House LA et al. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives. Spinal Cord, 2009, 47:882-886. doi: http://dx.doi.org/10.1038/sc.2009.64 53. Roessler RT, Hennessey ML, Rumrill PD. Strategies for improving career services for postsecondary students with disabilities: results of a focus group study of key stakeholders. Career Development for Exceptional Individuals, 2007, 30:158-170. doi: http://dx.doi.org/10.1177/08857288070300030501 54. Shem K et al. Return to work and school: a model mentoring program for youth and young adults with spinal cord injury. Spinal Cord, 2011, 49:544-548. doi: http://dx.doi.org/10.1038/sc.2010.166 55. Houchins DE. Post-secondary transitions assistive technology barriers and facilitators during secondary and post-secondary transitions. Career Development for Exceptional Individuals, 2001, 24:73-88. doi: http://dx.doi. org/10.1177/088572880102400106 56. National Center on Secondary Education and Transition (NCSET). Current challenges facing the future of secondary education and transition services for youth with disabilities in the United States. US Department of Education, Office of Special Education Program, Washington, DC, 2004. 57. Scarborough, J., Gilbride, D. Developing relationships with rehabilitation counselors to meet the transition needs of students with disabilities. Professional School Counseling. 2006 10: 25–33. 58. Dutta A, Schiro-Geist C, Kundu M. Coordination of postsecondary transition services for students with disabilities. Journal of Rehabilitation, 2009, 75:10-17. 59. Taylor M, Baskett M, Wren C. Managing the transition to university for disabled students. Education + Training, 2010, 52:165-175. 60. Lewin KM. Improving access, equity and transitions in education: creating a research agenda. Create Pathways to Access, Research Monograph, No. 1. Brighton, University of Sussex, 2007. 61. Vosloo S-M. The functioning of primary school learners with paraplegia/paraparesis in mainstream schools in the Western Cape, South Africa. An exploratory study. Disability and Rehabilitation, 2009, 31:23-31. doi: http://dx.doi. org/10.1080/09638280802280643 62. Ong LC, Lim YN, Sofiah A. Malaysian children with spina bifida: relationship between functional outcome and level of lesion. Singapore Medical Journal, 2002, 43:012−017. 63. Masangwa. Disabled children can and should go to school. The Africa Report, 2010 (http://theafricareport.com/Blog/index. php?trackback/12, accessed 15.5.2012). 64. Losinsky LO et al. An investigation into the physical accessibility to wheelchair bound students of an Institution of Higher Education in South Africa. Disability and Rehabilitation, 2003, 25:305-308. doi: http://dx.doi. org/10.1080/0963828021000043743 PMID:12745953 65. Abend AC. Planning and designing for students with disabilities. National Clearinghouse for Educational Facilities, 2001 (http://www.ncef.org/pubs/accessibility.pdf, accessed 14 November 2012). 66. Pivik J, McComas J, Laflamme M. Barriers and facilitators to inclusive education. Exceptional Children, 2002, 69:97-107.
189
International Perspectives on Spinal Cord Injury
67. Monk J, Wee J. Factors shaping attitudes toward physical disability and availability of rehabilitation support services for disabled persons in rural Kenya. Asia Pacific Disability Rehabilitation Journal, 2008, 19:93-113. 68. OECD. Accessibility Programme and School Restoration in Lisbon. PEB Exchange Paris: Organisation for Economic Co-operation and Development, 2006. 69. Cook A et al. School-based use of a robotic arm system by children with disabilities. IEEE Transactions on Neural Systems and Rehabilitation Engineering, 2005, 13:452-460. PMID:16425826 doi: http://dx.doi.org/10.1109/TNSRE.2005.856075 PMID:16425826 70. Pilot SCI. Making equipment decisions after spinal cord injury. A peer support discussion guide. Toronto, Toronto Rehabilitation Institute, 2003 (http://www.scipilot.com/_g/expe_g/PeerGuide.pdf, accessed 20 April 2012). 71. Hasselbring TS, Glaser CHW. Use of computer technology to help students with special needs. The Future of Children: Children and Computer Technology, 2000, 10:102-122. doi: http://dx.doi.org/10.2307/1602691 PMID:11255702 72. Kemp CE, Hourcade JJ, Parette HP. Building and initial information base. Assistive technology funding resources for schoolaged students with disabilities. Journal of Special Education Technology, 2000, 15:4. 73. Government of United Kingdom. Disabled students’ allowances. London, United Kingdom (http://www.gov.uk/disabledstudents-allowances-dsas, accessed 11 April 2013). 74. Disability Alliance. Disability Alliance Northern Ireland. London, United Kingdom. (http://www.nidirect.gov.uk/disabilityalliance, accessed 11 April 2013). 75. Peters S. Inclusive education. An EFA strategy for all children. World Bank. Human Development Network. 2004 (http:// siteresources.worldbank.org/EDUCATION/Resources/278200-1099079877269/547664-1099079993288/InclusiveEdu_efa_ strategy_for_children.pdf, accessed 11 July 2012). 76. Meijer C. Financing of special needs education. A seventeen country study of the relation between financing of special needs education and integration Middelfart: Denmark: European Agency for Development in Special Needs Education, 1999. 77. Krause JS, Carter RE. Risk of mortality after spinal cord injury: relationship with social support, education, and income. Spinal Cord, 2009, 47:592-596. doi: http://dx.doi.org/10.1038/sc.2009.15 78. Whalley Hammel K. Experience of rehabilitation following spinal cord injury: a meta-synthesis of qualitative findings. Spinal Cord, 2007, 45:260-274. PMID:17310257 79. Back Up. Back Up Trust (http://www.backuptrust.org.uk/what-we-do/mentoring, accessed 5 May 2013). 80. Anderson CJ et al. Anxiety and depression in children and adolescents with spinal cord injuries. Developmental Medicine and Child Neurology, 2009, 51:826-832. doi: http://dx.doi.org/10.1111/j.1469-8749.2009.03268.x 81. Krause JS, Broderick LA. 25-year longitudinal study of the natural course of aging after spinal cord injury. Spinal Cord, 2005, 43:349-356. doi: http://dx.doi.org/10.1038/sj.sc.3101726 82. Nel N et al. A comparative perspective on teacher attitude-constructs that impact on inclusive education in South Africa and Sweden. South African Journal of Education, 2011, 31:74-90. 83. Huang HH, Diamond KE. Early childhood teachers’ ideas about including children with disabilities in programmes designed for typically developing children. International Journal of Disability Development and Education, 2009, 56:169-182. doi: http://dx.doi.org/10.1080/10349120902868632 84. Mulvihill BA, Cotton JN, Gyaben SL. Best practices for inclusive child and adolescent out-of-school care. A review of the literature. Family & Community Health, 2004, 27:52-64. 85. Mukhopadhay S, Molosiwa SM. Influence of an introductory special education course on attitude change of PGDE students of University of Botswana. Asia Pacific Disability Rehabilitation Journal, 2010, 21. 86. Wehbi S. The challenges of inclusive education in Lebanon. Disability & Society, 2006, 21:331-343. doi: http://dx.doi. org/10.1080/09687590600679980 87. UNESCO. Toolkit for creating inclusive learning-friendly environments. Paris, United Nations Educational, Scientific and Cultural Organization, 2009. 88. OECD. OECD toolkit on teaching for diversity.Paris, OECD, Centre for Educational Research and Innovation (www.oecd.org/ edu/ted/toolkit, accessed 18 May 2012). 89. Sharma, U, Forlin, C, Loreman, T. Impact of training on pre-service teachers’ attitudes and concerns about inclusive education and sentiments about persons with disabilities. Disability & Society, 2010, 23:772–785. 90. Diaz-Greenberg R et al. What teachers need to know about the struggle for self-determination (conscientization) and self-regulation: adults with disabilities speak about their education experiences. Teaching and Teacher Education, 2000, 16:873-887. doi: http://dx.doi.org/10.1016/S0742-051X(00)00032-9 91. Buckup S. The price of exclusion. The economic consequences of excluding people with disabilities from the world of work. Employment Working Paper, No. 43. Geneva, International Labour Organization, 2009.
190
Chapter 8 Education and employment
92. Krause JS et al. Employment after spinal cord injury: differences related to geographic region, gender and race. Archives of Physical Medicine and Rehabilitation, 1998, 79:615-624. doi: http://dx.doi.org/10.1016/ S0003-9993(98)90033-8 93. Krause JS. Adjustment to life after spinal cord injury: a comparison among three participant groups based on employment status. Rehabilitation Counseling Bulletin, 1992, 35:218-229. 94. Crisp R. Vocational decision making by sixty spinal cord injury patients. Paraplegia, 1992, 30:420-424. doi: http://dx.doi. org/10.1038/sc.1992.92 95. Chapin M, Kewman D. Factors affecting employment following spinal cord injury: a qualitative study. Rehabilitation Psychology, 2001, 46:400-416. doi: http://dx.doi.org/10.1037/0090-5550.46.4.400 96. Ottomanelli L, Lind L. A review of critical factors related to employment following spinal cord injury: implications for research and vocational services. The Journal of Spinal Cord Medicine, 2009, 32:503-531. PMID:20025147 97. Krause JS, Saunders L, DeVivo MJ. Income and risk of mortality after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:339-345. doi: http://dx.doi.org/10.1016/j.apmr.2010.09.032 98. Hess DW et al. Predictors for return to work after spinal cord injury: a 3-year multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2000, 81:359-363. doi: http://dx.doi.org/10.1016/S0003-9993(00)90084-4 99. Krause JS, Anson C. Adjustment after spinal cord injury: relationship to participation in employment of educational activities. Rehabilitation Counseling Bulletin, 1997, 40:202-214. 100. Meade MA et al. The influence of secondary conditions on job acquisition and retention in adults with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:425-432. doi: http://dx.doi.org/10.1016/j.apmr.2010.10.041 101. Young AE, Murphy GC. Employment status after spinal cord injury (1992–2005): A review with implications for interpretation, evaluation, further research, and clinical practice. International Journal of Rehabilitation Research, 2009, 32:1-11. doi: http://dx.doi.org/10.1097/MRR.0b013e32831c8b19 102. OECD. Transforming disability into ability. Policies to promote work and income security for disabled people. Paris, Organisation for Economic Co-operation and Development, 2003. 103. Lidal IB, Huynh TK, Biering-Sorensen F. Return to work following spinal cord injury: A review. Disability and Rehabilitation, 2007, 29:1341-1375. doi: http://dx.doi.org/10.1080/09638280701320839 PMID:17729082 104. Lidal IB et al. Employment of persons with spinal cord lesions injured more than 20 years ago. Disability and Rehabilitation, 2009, 31:2174-2184. doi: http://dx.doi.org/10.3109/09638280902946952 105. Ramakrishnan K et al. Return to work after spinal cord injury in Malaysia. Spinal Cord, 2011, 49:812-816. doi: http://dx.doi. org/10.1038/sc.2010.186 106. Hansen CH, Mahmud I, Bhuiyan AJ. Vocational reintegration of people with spinal cord lesion in Bangladesh – an observational study based on a vocational training project at CRP. Asia Pacific Disability Rehabilitation Journal, 2007, 18:63-75. 107. Gupta N, Solomon J, Raja K. Employment after paraplegia in India: a postal survey. Spinal Cord, 2011, 49:806-811. doi: http://dx.doi.org/10.1038/sc.2011.1 108. Levy LF et al. Problems, struggles and some success with spinal cord injury in Zimbabwe. Spinal Cord, 1998, 36:213-218. doi: http://dx.doi.org/10.1038/sj.sc.3100574 109. Samuelkamaleshkumar S et al. Community reintegration in rehabilitated South Indian persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2010, 91:1117-1121. doi: http://dx.doi.org/10.1016/j.apmr.2010.04.005 110. Gerhardt CA et al. Educational and occupational outcomes among survivors of childhood cancer during the transition to emerging adulthood. Journal of Developmental and Behavioral Pediatrics, 2007, 28:448-455. doi: http://dx.doi.org/10.1097/ DBP.0b013e31811ff8e1 111. Frieden L, Winnegar AJ. Opportunities for research to improve employment for people with spinal cord injuries. Spinal Cord, 2012, 50:379-381. doi: http://dx.doi.org/10.1038/sc.2012.38 112. Yasuda S et al. Return to work after spinal cord injury: a review of recent research. NeuroRehabilitation, 2002, 17:177-186. PMID:12237497 113. Al-Khodairy AT, El Masry WS. Vocational rehabilitation and spinal cord injuries. In: Gobelet C, Franchignoni F, eds. Vocational rehabilitation. Collection de L’Académie Européenne de Médecine de Réadaptation. Paris, Springer-Verlag France, 2006, 165−184. doi: http://dx.doi.org/10.1007/2-287-29745-6_11 114. Anderson D et al. Determinants of return to work among spinal cord injury patients: a literature review. Journal of Vocational Rehabilitation, 2007, 27:57-68. 115. Noreau L et al. Work and employment. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010 (http://www.scireproject.com/sites/default/files/ work_and_employment.pdf, accessed 12 May 2012).
191
International Perspectives on Spinal Cord Injury
116. Krause JS et al. Employment after spinal cord injury: an analysis of cases from the Model Spinal Cord Injury Systems. Archives of Physical Medicine and Rehabilitation, 1999, 80:1492-1500. doi: http://dx.doi.org/10.1016/S0003-9993(99)90263-0 117. Valtonen K et al. Work participation among persons with traumatic spinal cord injury and meningomyelocele. Journal of Rehabilitation Medicine, 2006, 38:192-200. doi: http://dx.doi.org/10.1080/16501970500522739 118. Marini I et al. Vocational rehabilitation service patterns related to successful competitive employment outcomes of persons with spinal cord injury. Journal of Vocational Rehabilitation, 2008, 28:1-13. 119. Krause JS et al. Prediction of postinjury employment and percentage of time worked after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2012, 93:373-375. doi: http://dx.doi.org/10.1016/j.apmr.2011.09.006 120. Phillips VL, Hunsaker AE, Florence CS. Return to work and productive activities following a spinal cord injury: the role of income and insurance. Spinal Cord, 2012, 50:623–626 (E-pub ahead of print). doi: http://dx.doi.org/10.1038/sc.2012.22 121. Krause JS, Terza JV, Dismuke C. Earnings among people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:1474-1481. doi: http://dx.doi.org/10.1016/j.apmr.2007.12.040 122. Meade MA et al. Vocational rehabilitation services for individuals with spinal cord injury. Journal of Vocational Rehabilitation, 2006, 25:3-11. 123. Arango-Lasprilla JC et al. Race, ethnicity, and employment outcomes 1, 5, and 10 years after spinal cord injury: a longitudinal analysis. Journal of Physical Medicine & Rehabilitation: the journal of injury, function, and rehabilitation, 2010, 2:901–910. 124. Wehman P et al. Employment satisfaction of individuals with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2000, 79:161-169. doi: http://dx.doi.org/10.1097/00002060-200003000-00009 125. Krause JS. Aging and self-reported barriers to employment after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2001, 6:102-115. doi: http://dx.doi.org/10.1310/1WMH-35Q6-12B5-3WMN 126. Benavente A et al. Assessment of disability in spinal cord injury. Disability and Rehabilitation, 2003, 25:1065-1070. doi: http://dx.doi.org/10.1080/0963828031000137775 127. Tomassen PC, Post MW, van Asbeck FW. Return to work after spinal cord injury. Spinal Cord, 2000, 38:51-55. doi: http:// dx.doi.org/10.1038/sj.sc.3100948 128. Krause JS. Years to employment after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2003, 84:1282-1289. doi: http://dx.doi.org/10.1016/S0003-9993(03)00265-X 129. Pflaum C et al. Worklife after traumatic spinal cord injury. The Journal of Spinal Cord Medicine, 2006, 29:377-386. PMID:17044388 130. Krause JS, Coker JL. Aging after spinal cord injury: a 30-year longitudinal study. The Journal of Spinal Cord Medicine, 2006, 29:371-376. PMID:17044387 131. Kurtaran A et al. Occupation in spinal cord injury patients in Turkey. Spinal Cord, 2009, 47:709-712. doi: http://dx.doi. org/10.1038/sc.2009.79 132. Murphy GC et al. Predicting employment status at 2 years postdischarge from spinal cord injury rehabilitation. Rehabilitation Psychology, 2011, 56:251-256. doi: http://dx.doi.org/10.1037/a0024524 133. Cifu DX, Wehman P, McKinley WO. Determining impairment following spinal cord injury. Physical Medicine and Rehabilitation Clinics of North America, 2001, 12:603-612. PMID:11478191 134. Kennedy P et al. A multi-centre study of the community needs of people with spinal cord injuries: the first 18 months. Spinal Cord, 2010, 48:15-20. doi: http://dx.doi.org/10.1038/sc.2009.65 135. Sekaran P et al. Community reintegration of spinal cord-injured patients in rural south India. Spinal Cord, 2010, 48:628-632. doi: http://dx.doi.org/10.1038/sc.2010.6 136. Jang Y, Wang YH, Wang JD. Return to work after spinal cord injury in Taiwan: the contribution of functional independence. Archives of Physical Medicine and Rehabilitation, 2005, 86:681-686. doi: http://dx.doi.org/10.1016/j.apmr.2004.10.025 137. Escorpizo R et al. A conceptual definition of vocational rehabilitation based on the ICF: building a shared global model. Journal of Occupational Rehabilitation, 2011, 21:126-133. doi: http://dx.doi.org/10.1007/s10926-011-9292-6 138. Gard G, Soderberg S. How can a work rehabilitation process be improved? A qualitative study from the perspective of social insurance officers. Disability and Rehabilitation, 2004, 26:299-305. doi: http://dx.doi.org/10.1080/09638280310001647624 139. DeSouza M et al. The Papworth early rehabilitation programme: vocational outcomes. Disability and Rehabilitation, 2007, 29:671-677. doi: http://dx.doi.org/10.1080/09638280600926538 140. Conroy L, McKenna K. Vocational outcome following spinal cord injury. Spinal Cord, 1999, 37:624-633. doi: http://dx.doi. org/10.1038/sj.sc.3100904 141. Schönherr MC et al. Vocational perspectives after spinal cord injury. Clinical Rehabilitation, 2005, 19:200-208. doi: http:// dx.doi.org/10.1191/0269215505cr845oa PMID:15759536 142. Marnetoft SU et al. Factors associated with successful vocational rehabilitation in a Swedish rural area. Journal of Rehabilitation Medicine, 2001, 33:71-78. doi: http://dx.doi.org/10.1080/165019701750098902
192
Chapter 8 Education and employment
143. Targett P, Wehman P, Young C. Return to work for persons with spinal cord injury: designing work supports. NeuroRehabilitation, 2004, 19:131-139. PMID:15201472 144. Yeager P et al. Assistive technology and employment: experiences of Californians with disabilities. Work (Reading, Mass.), 2006, 27:333-344. PMID:17148870 145. Burns SM et al. Psychosocial predictors of employment status among men living with spinal cord injury. Rehabilitation Psychology, 2010, 55:81-90. doi: http://dx.doi.org/10.1037/a0018583 146. Krause JS, Broderick LA. Relationship of personality and locus of control with employment outcomes among participants with spinal cord injury. Rehabilitation Counseling Bulletin, 2006, 49:111-114. doi: http://dx.doi.org/10.1177/00343552060490020201 147. Chan SKK, Man DWK. Barriers to returning to work for people with spinal cord injuries: a focus group study. Work (Reading, Mass.), 2005, 25:325-332. PMID:16340109 148. Lin M-R et al. A prospective study of factors influencing return to work after traumatic spinal cord injury in Taiwan. Archives of Physical Medicine and Rehabilitation, 2009, 90:1716-1722. doi: http://dx.doi.org/10.1016/j.apmr.2009.04.006 PMID:19801061 149. Pearcey TE, Yoshida KK, Renwick RM. Personal relationships after a spinal cord injury. International Journal of Rehabilitation Research, 2007, 30:209-219. doi: http://dx.doi.org/10.1097/MRR.0b013e32829fa3c1 150. Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord, 2010, 48:73-79. doi: http://dx.doi.org/10.1038/sc.2009.92 151. Targett P et al. Functional vocational assessment for individuals with spinal cord injury. Journal of Vocational Rehabilitation, 2005, 22:149-161. 152. Jongbloed L et al. Employment after spinal cord injury: the impact of government policies in Canada. Work (Reading, Mass.), 2007, 29:145-154. PMID:17726290 153. Wehmeyer ML et al. The self-determined career development model: a pilot study. Journal of Vocational Rehabilitation, 2003, 19:79-87. 154. New Zealand Spinal Trust. Kaleidoscope (http://www.nzspinaltrust.org.nz/rehab.asp, accessed 11 April 2013). 155. Inge K et al. Supported employment and assistive technology for persons with spinal cord injury: three illustrations of successful work supports. Journal of Vocational Rehabilitation, 1998, 10:141-152. doi: http://dx.doi.org/10.1016/S1052-2263(98)00010-5 156. CRP-Bangladesh. Centre for the rehabilitation of the paralysed. (http://www.crp-bangladesh. org/index.php?option=com_ content&view=article&id=69&Itemid=60, accessed 11 April 2013). 157. Hagner D, Cooney B. Building employer capacity to support employees with severe disabilities in the workplace. Work (Reading, Mass.), 2003, 21:77-82. PMID:12897393 158. Gilbride D et al. Identification of the characteristic of work environments and employers open to hiring and accommodating people with disabilities. Rehabilitation Counseling Bulletin, 2003, 46:130-137. doi: http://dx.doi.org/10.1177/003435 52030460030101 159. Boyland A, Burchardt T. Barriers to self-employment for disabled people. Report prepared for the Small Business Service. London, 2002 (http://www.bis.gov.uk/files/file38357.pdf, accessed 16 May 2012). 160. Barf HA et al. Restrictions in social participation in young adults with spina bifida. Disability and Rehabilitation, 2009, 31:921-927. doi: http://dx.doi.org/10.1080/09638280802358282 161. Ravaud JF, Madiot B, Ville I. Discrimination towards disabled people seeking employment. Social Science & Medicine, 1992, 35:951-958. doi: http://dx.doi.org/10.1016/0277-9536(92)90234-H 162. McMahon BT et al. Workplace discrimination and spinal cord injury: the national EEOC ADA research project. Journal of Vocational Rehabilitation, 2005, 23:155-162. 163. Hernandez B, Keys L, Balcazar F. Employer attitudes toward workers with disabilities and their ADA employment rights: a literature review. Journal of Rehabilitation, 2000, 66:4-16. 164. Gilbride D et al. Employers’ attitudes toward hiring persons with disabilities and vocational rehabilitation services. Journal of Rehabiltation, 2000, 66:17–23. 165. McNeal DR, Somerville NJ, Wilson DJ. Work problems and accommodations reported by persons who are postpolio or have a spinal cord injury. Assistive Technology, 1999, 11:137-157. doi: http://dx.doi.org/10.1080/10400435.1999.10131998 166. Sabata D et al. A retrospective analysis of recommendations for workplace accommodations for persons with mobility and sensory limitations. Assistive Technology, 2008, 20:28-35. doi: http://dx.doi.org/10.1080/10400435.2008.10131929 167. JAN. Workplace accommodations: low cost, high impact. Morgantown, WV, Job Accommodation Network, updated 2011, (http://AskJAN.org/media/LowCostHighImpact.doc, accessed 16 May 2012). 168. Somerville N, Wilson DJ, Bruyere SM. Employing and accommodating individuals with spinal cord injuries. Ithaca, NY, Cornel University, 2000 (http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1013&context=edicollect, accessed 16 May 2012).
193
International Perspectives on Spinal Cord Injury
169. McKinley W et al. Assistive technology and computer adaptations for individuals with spinal cord injury. NeuroRehabilitation, 2004, 19:141-146. PMID:15201473 170. Bricout JC. Using telework to enhance return to work outcomes for individuals with spinal cord injuries. NeuroRehabilitation, 2004, 19:147-159. PMID:15201474 171. Hedrick B et al. Employment issues and assistive technology use for persons with spinal cord injury. Journal of Rehabilitation Research and Development, 2006, 43:185-198. doi: http://dx.doi.org/10.1682/JRRD.2005.03.0062 172. Priebe MM et al. Spinal cord injury medicine. 6: Economic and societal issues in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl. 1:S84-S88. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.005 173. Driscoll MP, Rodger SA, deJonge DM. Factors that prevent or assist the integration of assistive technology into the workplace for people with spinal cord injuries: perspectives of the users and their employers and co-workers. Journal of Vocational Rehabilitation, 2001, 16:53-66. 174. Allen K, Blascovich J. The value of service dogs for people with severe ambulatory disabilities. A randomized controlled trial. Journal of the American Medical Association, 1996, 275:1001-1006. doi: http://dx.doi.org/10.1001/ jama.1996.03530370039028 175. Malacrida C. Income support policy in Canada and the UK: different, but much the same. Disability & Society, 2010, 25:673686. doi: http://dx.doi.org/10.1080/09687599.2010.505739 176. Cramm JM, Finkenflügel H. Exclusion of disabled people from microcredit in Africa and Asia: a literature review. Asian Pacific Disability Rehabilitation Journal, 2008, 19:15-33. 177. de Klerk T. Funding for self-employment of people with disabilities. Grants, loans, revolving funds or linkage with microfinance programmes. Leprosy Review, 2008, 79:92-109. PMID:18540240 178. Handicap International. Good practices for the economic inclusion of people with disabilities in developing countries. Funding mechanisms for self-employment. Handicap International, 2006 (http://www.handicap-international.org.uk/Resources, accessed 11 April 2013). 179. Rowell D, Connelly LB. Personal assistance, income and employment: the spinal injuries survey instrument (SISI) and its application in a sample of people with quadriplegia. Spinal Cord, 2008, 46:417-424. doi: http://dx.doi.org/10.1038/sj.sc.3102157 180. Scovil CY et al. Follow-up study of spinal cord injured patients after discharge from inpatient rehabilitation in Nepal in 2007. Spinal Cord, 2012, 50:232-237. doi: http://dx.doi.org/10.1038/sc.2011.119 181. Kassah AK. Begging as work: a study of people with mobility difficulties in Accra, Ghana. Disability & Society, 2008, 23:163170. doi: http://dx.doi.org/10.1080/09687590701841208 182. Marriott A, Gooding K. Social assistance and disability in developing countries. Haywards Heath, Sightsavers International, 2007. 183. Singh R, Dhankar SS, Rohilla R. Quality of life of people with spinal cord injury in Northern India. International Journal of Rehabilitation Research, 2008, 31:247-251. doi: http://dx.doi.org/10.1097/MRR.0b013e3282fb7d25 184. Atwell S, Hudson LM. Social security legislation creates Ticket to Work and Work Incentives Improvement Act. Topics in Spinal Cord Injury Rehabilitation, 2004, 9:26-32. doi: http://dx.doi.org/10.1310/LU8A-C1PL-URT1-K0N2 185. Mitra S. Disability and social safety nets in developing countries. International Journal of Disability Studies, 2006, 2:43-88. 186. OECD. Sickness, disability and work: breaking the barriers. A synthesis of findings across OECD countries. Paris, Organisation for Economic Co-operation and Development, 2010.
194
Chapter 9 The way forward: recommendations
9
The way forward: recommendations Spinal cord injury (SCI) is a medically complex and life-disrupting condition. SCI has costly consequences, both for individuals and society. People are left dependent, are excluded from school, and are less likely to be employed. Worst of all, they risk premature death. SCI is both a public health and human rights challenge. However, with the right policy responses, as demonstrated in this report, it is possible to live, thrive and contribute with SCI anywhere in the world. People with SCI are people with disabilities and are entitled to the same human rights and respect as all other people with disabilities. Once their immediate health needs have been met, social and environmental barriers are the main obstacles to successful functioning and inclusion for people with SCI. Ensuring that health services, education, transport and employment are available and accessible to people with SCI, alongside other people with disabilities, can make the difference between failure and success. SCI will always be lifechanging, but it need not be a tragedy and it need not be a burden.
Key findings 1. Spinal cord injury is a significant public health issue ■ The global incidence of SCI, both traumatic and non-traumatic, is likely to be between 40 and 80 cases per million population. Based on the 2012 world population estimates, this means that every year between 250 000 and 500 000 people suffer a spinal cord injury (1). The incidence of traumatic SCI (TSCI) reported in country-level studies ranges from 13 per million to 53 per million. Historically, up to 90% of SCI has been traumatic in origin, but data from the most recent studies indicate a slight trend towards an increase in the share of NTSCI. Available studies report an incidence of non-traumatic SCI (NTSCI) of 26 per million. ■ No global estimates of SCI prevalence are available. Data on SCI incidence and prevalence are inadequate and inconsistent. Even in developed countries, figures vary due to differences in case ascertainment and modelling methodology, as well as to real differences in epidemiology. For countries where data are available, TSCI prevalence figures range from 280 per 197
International Perspectives on Spinal Cord Injury
million population in Finland (2) to 681 per million in Australia (3) to 1298 per million in Canada (4). NTSCI prevalence for adults and children in Australia is 367 per million (5) and in Canada 1227 per million (4). Overall combined TSCI and NTSCI prevalence for Canada in 2010 was 2525 per million population. ■ Increasing prevalence of SCI in some countries. There is a trend towards increasing prevalence of SCI in high-income countries due to increases in survival rates, which have reached approximately 70% of general population life expectancy for tetraplegics and 88% for people with complete paraplegia (6). However, survival rates in low- and middleincome countries remain poor – as low as 1 to 2 years after injury in some settings − and this contributes to lower prevalence (7). Global ageing is likely to increase rates of NTSCI, and there is a slight trend for NTSCI to increase as a proportion of total SCI. ■ Changing profile of victims. The SCI incidence rate peaks in young adulthood and, to a lesser extent, in old age. While young males dominate the statistics, the profile is changing to include more older people and more women. Overall, age at time of injury is increasing. ■ Road traffic crashes, falls and violence are the main three causes of SCI. Road traffic injuries predominate in the African Region, accounting for nearly 70% of cases, and are a prominent underlying cause of SCI in other WHO regions as well, ranging between 40% in the South-East Asia Region and 55% in the Western Pacific Region. Falls, the second leading cause, account for just over 40% of all cases in the South-East Asia and Eastern Mediterranean Regions. The African Region reports the lowest percentage (14%) of falls, with the other WHO regions showing percentages between 27% and 36%. Rates of assault, including violence and self-harm, mostly from firearms, as a cause of SCI vary 198
considerably across regions, the Americas, African and Eastern Mediterranean Regions reporting the highest percentages of 14%, 12% and 11%, respectively. Workrelated accidents contribute to at least 15% of all TSCI cases. Across all regions, sport and leisure activities contribute less than 10% of all cases of TSCI. Attempted suicide has been shown to contribute to over 10% of TSCI cases in some countries. A third of NTSCI is linked to tuberculosis in sub-Saharan Africa. ■ People with SCI die earlier. Studies have indicated that people with SCI are 2 to 5 times more likely to die prematurely than people without SCI. People with tetraplegia are at higher risk than people with paraplegia, and people with complete lesions are at higher risk than people with incomplete lesions. Mortality is particularly high in the first year after injury (8), and mortality rates are strongly affected by the capacity of the health-care system, especially emergency care. ■ In low-income countries, preventable secondary conditions remain the main causes of death for people with SCI (9). In highincome countries, the main causes of death for people with SCI have changed over recent decades (10, 11), with urological complications in decline and the leading cause of death shifting to respiratory problems, pneumonia or influenza in particular. Heart disease, suicide and neurological problems are other associated causes of death.
2. Personal and social impacts of spinal cord injury are considerable ■ SCI has a debilitating psychological impact. 20–30% of people with SCI show clinically significant symptoms of depression, which is substantially higher than the general population (12), although the majority of people eventually adapt well to SCI.
Chapter 9 The way forward: recommendations
■ People with SCI have a narrower margin
■
■
■
■
of health, due partly to preventable complications such as urinary tract infections and pressure sores. SCI is associated with family breakdown, but also family resilience. Immediately after injury, SCI can have a negative impact on personal relationships and is associated with a higher rate of divorce. However, post-SCI relationships generally do better. Carers of children and young people with spina bifida or traumatic SCI typically experience isolation and stress. Lower participation in school. Children and young people with spina bifida or acquired SCI are less likely to attend school and less likely to participate in tertiary education. They face obstacles in the transition between school and tertiary education, and between education and employment. SCI is associated with lower rates of economic participation. Average global employment rates for people with SCI are only 37%, with a high of 51% in Europe (13). Costs of SCI are higher than for comparable conditions such as dementia, multiple sclerosis, cerebral palsy and bipolar disorder. In Australia the lifetime costs (including the financial costs and burden-of-disease costs) were estimated to be AUS$5 million for a person with paraplegia and AUS$9.5 million for a person with tetraplegia (14). Indirect costs, such as lost earnings, generally exceed direct costs.
■
■
■
■
3. Barriers to services and environments restrict participation and undermine quality of life ■ Inadequate policy and provision. Often appropriate policies and services are lacking in areas such as inclusive education, accessible environments and rehabilitation. For example in low- and middle- income coun-
tries, only 5−15% of people have the assistive devices that they need (15). In a Netherlands study, more than half of respondents with SCI were delayed leaving in-patient rehabilitation due to delays in obtaining wheelchairs (16). Lack of funding. One Nigerian study, for instance, showed that for more than 40% of respondents with SCI, acute treatment costs represented over 50% of their annual income (17). Similarly, cost is one of the main barriers when it comes to assistive devices. Physical access barriers. Homes, schools, workplaces and even hospitals are often inaccessible to people who use wheelchairs. Inaccessibility of transport is a major obstacle to participating in society, particularly for those who live in rural areas. This prevents people with SCI leaving hospital or nursing home and becoming independent. Negative attitudes. It may be perceived for example, that tetraplegia is a fate worse than death, or that people in wheelchairs cannot work or cannot have intimate relationships. Even family members may have negative attitudes and low expectations. Often, prejudice arises from lack of knowledge and lack of contact. Lack of knowledge. Rehabilitation providers may lack knowledge and skills relevant to SCI. For example, lack of expertise among service providers can hinder people with SCI receiving appropriate assistive technologies. Primary care staff may not know about preventable complications in SCI, and diagnostic overshadowing can mean that people with SCI do not receive screening or treatment for their general health needs.
4. Spinal cord injury is preventable ■ Death and disability associated with road traffic crashes can be reduced through the safe systems approach, which highlights what can be done to improve road environments, 199
International Perspectives on Spinal Cord Injury
■ ■
■
■ ■
vehicle safety and driver behaviour (18). For example the world’s first compulsory seatbelt laws were introduced in Australia in 1970, and, in conjunction with government efforts to improve road design and regulations on car safety, the incidence of SCI from road traffic crashes has been reduced from 60 to 25 cases a year (19). Workplace codes on health and safety can reduce injuries caused in mining, construction and agriculture. Limiting access to guns and knives prevents injuries and reduces cost to society. Measures for limiting access include bans, licensing schemes, a minimum age for buyers, background checks and safe storage requirements. These measures have been successfully implemented in Austria, Brazil and some states in the USA. Injuries from sporting and leisure activities can be minimized through better design (e.g. of swimming pools, play equipment and ski runs), safety information (e.g. dangers of diving into shallow water, training of rugby coaches) and sports-wide awareness. Early detection and treatment can reduce the prevalence of spinal TB (20), as well as spinal tumours arising from cancer. Improved nutrition reduces the incidence of spina bifida and other neural tube defects (21). Voluntary periconceptional oral folate supplementation (three months before and after conception) has been shown to reduce the rate of infants being born with neural tube defects, including spina bifida (22, 23). Many countries that have a policy of supplementation of wheat flour with folic acid have also seen a fall in the incidence of spina bifida (24 –27).
5. Spinal cord injury is survivable ■ Appropriate pre-hospital care is vital for immediate survival. Quick recognition, early evaluation and appropriate manage-
ment of suspected SCI are required. Pre-hospital management in traumatic SCI requires: a rapid evaluation, including measurement of vital signs and level of consciousness; initiation of injury management, including stabilization of vital functions, immobilization of the spine to preserve neurological function until long-term spinal stability can be established, and control of bleeding, body temperature and pain; and prompt and safe access to the health-care system. People should ideally arrive in an acute care setting within two hours, which relies on adequate emergency and rescue services. ■ Acute care ensures stabilization. Acute care may involve surgical intervention or conservative management, but accurate diagnosis of SCI and co-occurring conditions is the vital first step. Many factors should be taken into consideration to determine the most appropriate management approach, including level of injury, type of fracture, degree of instability, presence of neural compression, impact of other injuries, surgical timing, availability of resources such as expertise and appropriate medical and surgical facilities, and benefits and risks. In all cases, people with SCI and their family members should be given an informed choice between conservative and surgical management. ■ Ongoing health care maintenance is required for survival and quality of life. An individual can avoid or survive the complications of SCI, such as urinary tract infections and pressure ulcers, remain healthy and enjoy a long and full life with access to ongoing health care. People with SCI often have a narrower margin of health, for example, a raised risk of chest infections and cardiovascular disease. Without access to basic health care, together with products such as catheters and appropriate cushions followed up by advice on healthy living, a person with SCI is more likely to die prematurely.
200
Chapter 9 The way forward: recommendations
6. Spinal cord injury need not prevent good health and social inclusion A person with SCI who has access to health care, personal assistance if required, and assistive devices should be able to return to study, live independently, make an economic contribution, and participate in family and community life. ■ Once stabilized, there is a need for access to relevant acute and post-acute medical care and rehabilitation services, to ensure that functioning is maximized and that the individual can become as independent as possible. There are different models of service delivery, but specialist centres have been shown to reduce costs, result in few complications, and result in fewer rehospitalizations, compared to nonspecialized services. People with SCI give high priority to achieving control of bladder and bowel functions. Therapy can enhance function in lower and upper limbs and teach techniques for achieving independence in everyday activities. Mental health services and advice are important: depression is associated with fewer improvements in functioning and increased rate of health complications. Information and support with sexual and reproductive health needs should also be part of rehabilitation. ■ Appropriate assistive devices are a vital component of rehabilitation. For example, more than 90% of people with SCI require some form of wheelchair. These must be appropriate for the individual and for the setting. Other assistive technology needs include modifications in and around the home, environmental control, and sometimes communication systems for people with tetraplegia. ■ Services should support return to education and employment. Self-help groups, accessible buildings and transport, vocational rehabilitation and antidiscrimination measures can ensure that children and adults can
return to study, live independently, make an economic contribution and participate in family and community life.
Recommendations 1. Improve health sector response to spinal cord injury This requires: building capacity of the health and rehabilitation workforce; strengthening prevention and early response services; ensuring that appropriate medical services and rehabilitation services are available and accessible; improving coordination to enhance effectiveness and save costs; extending health insurance coverage so that SCI does not lead to catastrophic health expenditure; and identifying strategies for the supply of appropriate assistive technology and health products.
2. Empower people with spinal cord injury and their families People with SCI need information so that they can take responsibility for their own health care after discharge. Information should be shared with family members during rehabilitation. Support for family members and other caregivers can prevent stress and burnout. In high-income countries, an independent living model of personal assistance can be empowering and cost effective for people with SCI who have high support needs. Communitybased rehabilitation (CBR) is important in lowincome settings. In all settings, social networks, self-help groups and disabled people’s organizations can promote empowerment and participation. Access to physical activities and sport can promote both physiological and psychological well-being.
201
International Perspectives on Spinal Cord Injury
3. Challenge negative attitudes to people with spinal cord injury As part of general disability awareness campaigns, this can involve a range of interventions, including undergraduate education for doctors and other health professionals, classroom activities to reduce stigma, and awareness campaigns through media.
SCI data. At service level, data are required on costs, outcomes and cost/benefits.
Next steps Implementing the recommendations requires the involvement of different sectors – health, education, social protection, labour, transport and housing – and different actors – governments, civil society organizations (including organizations of persons with disabilities), professionals, the private sector, and people with SCI and their families. Sectors and actors need to work together because multidisciplinary teamwork will maximize success. It is essential that countries tailor their actions to their specific contexts. Where countries are limited by resource constraints, some of the priority actions, particularly those requiring technical assistance and capacity-building, can be included within the framework of international cooperation on disability and development.
4. Ensure that buildings, transport and information are accessible This requires: enforceable national access standards; teaching architects and designers about universal design; improving access to social housing; promoting “universally designed” bus rapid transport; mandating accessibility for private taxis; and using organizations of persons with disabilities to consult on accessibility and monitor progress.
5. Support employment and self-employment Vocational training, flexible working hours, supported employment, and community-based rehabilitation projects with a focus on livelihood are all promising options for people with SCI returning to work. Social protection schemes should be available, depending on the setting and the economic status of the individual, but should not act as a disincentive to return to work.
Governments can: ■ invest in effective primary prevention pro■ ■ ■ ■ ■ ■ grammes, which are evidence-based and respectful of people with SCI; improve provision of health, rehabilitation and support services for people with SCI; promote standards for national SCI data collection, including centralized SCI registries; ensure that appropriate insurance schemes exist that can protect people against the costs of injury; support public awareness, information and education initiatives that challenge negative attitudes to disability; adopt appropriate accessibility standards, covering housing, transport and public buildings; ensure that education policies enable children and adults with SCI to attend school and university on the same basis as others;
6. Promote appropriate research and data collection There is a pressing need to both increase and improve routine data collection and research on SCI. Disaggregated statistics on SCI, using standardized ICECI terminology, can assist incident trend analysis and help in monitoring of policy responses. SCI registries, which compile data directly from hospitals, together with longitudinal population-based cohort studies covering major life areas, are the best ways of collecting 202
Chapter 9 The way forward: recommendations
■ ensure access to vocational rehabilitation to help people with SCI prepare for work; ■ adopt antidiscrimination legislation in line with the CRPD.
Health and social care professionals and their organizations can: ■ offer appropriate SCI health care, with a coordinated multidisciplinary approach that includes people with SCI and their family members; ■ empower people with SCI and their family members so that they are able to look after their own health to the greatest extent possible; ■ include SCI topics in the training curriculum for medical and allied health professionals to raise awareness about SCI and promote SCI research; ■ undertake research to determine the best possible rehabilitation measures to restore function in different contexts.
establishment of new) resource-sensitive, appropriate and timely SCI health-care services; ■ collect internationally comparable SCI information and make these data available in annual reports published on the Internet in a searchable manner so that data can be easily located; ■ help ensure a smooth transition between inpatient, outpatient and community-based care through establishment of a coordinated, integrated and multidisciplinary service approach; ■ engage people with SCI and their family members as partners in service planning and delivery, provide them with information and include them in decision-making, planning, goal-setting, and monitoring and evaluation.
Academia can: ■ increase the evidence base for interventions ■ engage with policy-makers and other key by fostering SCI research; stakeholders to promote the implementation of the Report’s recommendations; ■ promote access to specialist training to ensure an adequate supply of suitably trained health professionals; ■ ensure that human rights issues related to disability are included in undergraduate curricula for teachers, doctors and professions allied to medicine; ■ remove barriers to the participation of people with SCI in tertiary education and research.
Disabled people’s organizations and nongovernmental organizations can: ■ promote development of peer networks and ■ ■ ■ self-help organizations, including support for personal assistance schemes; contribute to public awareness, information and education initiatives that challenge negative attitudes to disability; support people with SCI to access sporting, religious, cultural and leisure opportunities; help educate and empower people with SCI and their families on topics of health maintenance, assistance and support, housing, accessibility and mobility, education and employment; develop community-based rehabilitation initiatives in resource-poor and remote settings.
The private sector can: ■ invest in the development of appropriate and ■ ensure that products and services are accesaffordable assistive technologies; sible to people with disabilities, including people with SCI, in sectors such as health, sport, education; 203
■
Service providers can: ■ help strengthen existing (and support the
International Perspectives on Spinal Cord Injury
■ adopt universal design for new products and
services; ■ employ people with SCI, ensuring that recruitment is equitable, that reasonable accommodations are provided, and that employees who become SCI are supported to return to work.
Conclusion While the incidence of traumatic and non-traumatic SCI can and should be reduced, there will always be new cases of SCI. SCI will continue to affect mainly individuals in the prime of life. Ensuring an adequate medical and rehabilitation response, followed by supportive services and accessible environments, will help minimize the disruption to people with SCI and their families. These measures will also reduce the overall costs to society, in terms of dependency and lost productivity, and to the individual, in terms of lower self-esteem and impaired quality of life. SCI is preventable, survivable and need not preclude health and social inclusion. But action by governments and other stakeholders is urgently required. Without effective action, SCI will remain, all too often, a catastrophe.
People with spinal cord injury and their families can: ■ educate themselves about SCI health main■ participate in peer support and self-help ■ contribute to community education and ■ avail of opportunities to make an early ■ where appropriate, consider re-training and return to education and employment; developing self-employment activities to improve livelihood opportunities. awareness activities; programmes; tenance issues;
References United Nations Department of Economic and Social Affairs, Population Division. World population prospects: the 2012 revision, 2013. DVD Edition. 2. Dahlberg A et al. Prevalence of spinal cord injury in Helsinki. Spinal Cord, 2005, 43:47-50. doi: http://dx.doi.org/10.1038/ sj.sc.3101616 PMID:15520842 3. O’Connor PJ. Prevalence of spinal cord injury in Australia. Spinal Cord, 2005, 43:42-46. doi: http://dx.doi.org/10.1038/ sj.sc.3101666 PMID:15326472 4. Noonan VK et al. Incidence and prevalence of spinal cord injury in Canada: a national perspective. Neuroepidemiology, 2012, 38:219-226. doi: http://dx.doi.org/10.1159/000336014 PMID:22555590 5. New PW et al. Prevalence of non-traumatic spinal cord injury in Victoria, Australia. Spinal Cord, 2013, 51:99-102. doi: http:// dx.doi.org/10.1038/sc.2012.61 PMID:22665222 6. Middleton JW et al. Life expectancy after spinal cord injury: a 50-year study. Spinal Cord, 2012, 50:803-811. doi: http:// dx.doi.org/10.1038/sc.2012.55 PMID:22584284 7. Gosselin RA, Coppotelli C. A follow-up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 8. Lidal IB et al. Mortality after spinal cord injury in Norway. Journal of Rehabilitation Medicine, 2007, 39:145-151. doi: http:// dx.doi.org/10.2340/16501977-0017 PMID:17351697 9. Rathore MFA. Spinal cord injuries in the developing world. In: JH Stone, M Blouin, eds. International Encyclopedia of Rehabilitation, 2013. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/141/ 10. Hagen EM et al. Traumatic spinal cord injuries – incidence, mechanisms and course. Tidsskrift for Den Norske Laegeforening, 2012, 132:831-837. doi: http://dx.doi.org/10.4045/tidsskr.10.0859 PMID:22511097 11. Leal-Filho MB et al. Spinal cord injury: epidemiological study of 386 cases with emphasis on those patients admitted more than four hours after the trauma. Arquivos de Neuro-Psiquiatria, 2008, 66:365-368. doi: http://dx.doi.org/10.1590/S0004282X2008000300016 PMID:18641873 1.
204
Chapter 9 The way forward: recommendations
12. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http:// dx.doi.org/10.1038/sc.2011.182 PMID:22270190 13. Young AE, Murphy GC. Employment status after spinal cord injury (1992–2005): a review with implications for interpretation, evaluation, further research, and clinical practice. International Journal of Rehabilitation Research, 2009, 32:1-11. doi: http://dx.doi.org/10.1097/MRR.0b013e32831c8b19 PMID:19057392 14. Access Economics for the Victorian Neurotrauma Initiative. The economic cost of spinal cord injury and traumatic brain injury in Australia. 2009 (http://www.tac.vic.gov.au/about-the-tac/our-organisation/research/tac-neurotrauma-research/ vni/the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia.pdf, accessed 9 January 2013). 15. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. 16. Post MWM et al. Services for spinal cord injured: availability and satisfaction. Spinal Cord, 1997, 35:109-115. doi: http:// dx.doi.org/10.1038/sj.sc.3100362 PMID:9044519 17. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:1134-1137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 18. Peden M et al., eds. World report on road traffic injury prevention. Geneva, World Health Organization, 2004. 19. O’Connor P. Incidence and patterns of spinal cord injury in Australia. Accident; Analysis and Prevention, 2002, 34:405-415. doi: http://dx.doi.org/10.1016/S0001-4575(01)00036-7 PMID:12067103 20. Harries AD et al. The HIV-associated tuberculosis epidemic – when will we act? Lancet, 2010, 375:1906-1919. doi: http:// dx.doi.org/10.1016/S0140-6736(10)60409-6 PMID:20488516 21. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 22. Toriello HV. Policy and Practice Guideline Committee of the American College of Medical Genetics. Policy statement on folic acid and neural tube defects. Genetics in Medicine, 2011, 13:593-596. doi: http://dx.doi.org/10.1097/ GIM.0b013e31821d4188 PMID:21552133 23. De-Regil LM et al. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database of Systematic Reviews, 2010 6:CD007950. Review. PubMed PMID: 20927767. 24. Flour Fortification Initiative. FFI Database. Atlanta, 2012. (http://www.sph.emory.edu/wheatflour/globalmap.php accessed 28 May 2012). 25. Williams LJ et al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995–2002. Pediatrics, 2005, 116:580-586. doi: http://dx.doi.org/10.1542/peds.2005-0592 PMID:16140696 26. Berry RJ et al. Folic Acid Working Group. Fortification of flour with folic acid. Food and Nutrition Bulletin, Review 2010, 31:S22–35. PubMed PMID 20629350. 27. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554
205
Technical appendix A Methods used in systematic reviews on epidemiological outcomes (incidence, prevalence, etiology, mortality, cost) The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) statement was used as guideline to ensure a transparent and comprehensive reporting of the systematic review and meta-analyses (1). PRISMA is endorsed by leading organizations and medical journals (2).
Search strategy The Pubmed/Medline and EMBASE, the Latin American and Caribbean Health Sciences Literature (LILACS), the Indian Medlars Centre (IndMed) and the African Index Medicus (AIM) databases were searched for relevant publications between January 1st 2000 and August 15th 2012. In this review, spinal cord injuries with traumatic and non-traumatic origin were included as defined in Chapter 4 and classified by the International Spinal Cord Injury Data sets (3–5). The databases were searched using the free search terms ‘spinal cord injuries’, ‘spinal cord injury ’, ‘spinal cord lesion’, ‘paraplegi*’, ‘tetraplegi*’, ‘quadriplegi*’, ‘traumatic spinal cord injury ’, ‘spinal cord damage’ and ‘spina bifida’ and the abbreviations ‘SCI ’, ‘TSCI ’ and ‘NTSCI ’. Further outcome-related free terms included ‘prevalence’, ‘ incidence’, ‘epidemiology ’, ‘cause of ’, ‘cause of death ’, ‘cost *’, ‘aetiology ’, ‘etiology ’ and ‘mortality ’. The full text was searched using the MeSH terms and subject headings for SCI ‘spinal cord injury ’, ‘paraplegia’, ‘quadriplegia’ and ‘spinal dysraphism’, and outcomes ‘causality ’, ‘epidemiology ’, ‘ incidence’, ‘prevalence’, ‘mortality ’, ‘etiology ’, ‘cause of death ’ and ‘costs and cost analysis’ if the databases allowed. The literature search was performed without any language restrictions, the MeSH term search was restricted to humans, the free term search was without restrictions, and only papers with abstracts available were included. In addition reference lists of systematic reviews and literature summaries retrieved were screened for further publications, and an online hand search was performed for epub, ahead of print, online first papers in journal issues from 1 August 2012 to October 2012 (as available online on 8 October 2012). Journals screened were Spinal Cord, Journal of Spinal Cord Medicine, Spine, Journal of Rehabilitation Medicine, Journal of Neurotrauma, Archives of Physical Medicine and Rehabiliation, PM&R (American Journal of Physical Medicine & Rehabilitation), Epidemiology, International Journal of Epidemiology, American Journal of Epidemiology, 207
International Perspectives on Spinal Cord Injury
European Journal of Epidemiology, Journal of Epidemiology & Community Health, Journal of Clinical Epidemiology, European Spine Journal, Journal of Bone & Joint Surgery, Acta Orthopaedica Scandinavica, Asian Spine Journal, Global Spine Journal, Journal of Neurosurgery: Spine, Neurology India, International Journal of Technology Assessment in Health Care, Journal of Evaluation in Clinical Practice, and Journal of Health Services Research & Policy. Finally SCI registry web sites were searched for data. Relevant publications with a publication date after 1 January 2000 that were found by random hand searches during the further development process of the report were used to supplement information in the corresponding sections. In isolated cases regarding the outcome ‘cost ’, particularly important publications from before 2000, which were retrieved by screening the reference list of publications, were also included.
NTSCI cause of injury by subspecifications (i.e. car crashes, sport, violence); and (3) percentages of subgroups. For comparative analysis, etiology data were reclassified using the classification recommended by ISCoS (3, 5) where needed.
Exclusion criteria For all outcomes, studies were excluded if they exclusively reported on one SCI condition subgroup (osteochondrodysplasia, neurosyphilis, poliomyelitis, HTLV-infection, hereditary spastic paralysis, locked-in-syndrome, flaccid paralysis, Brown-Sequard syndrome, central cord syndrome, SCIWORA, malignant spinal cord compression), specific complications or co-morbidities (after vascular or spine surgery, cancer), ethnic minorities and employment backgrounds (veterans), single specific circumstances (workrelated SCI) if not representative of the whole population, and costs treatment comparisons or subtreatments (thrombosis, cauterization, drugs). The same was applied for single case registries (e.g. car crash in trauma registries) or case studies. In the case of spina bifida, data were only extracted from papers reporting incidence data and, when available, from pre- and post-fortification studies. Studies were further excluded if data reporting was incomplete (i.e. number of deaths and SCI cases missing). For the US Spinal Cord Injury Model System data were primarily extracted from the 2011 report as this proved to be richest and most detailed data presentation in terms of stratification across sociodemographic and time domains (6). In the case of foreign language papers that had met the eligibility criteria, the group screened the English abstracts and decided on the most representative studies to be translated for data extraction. Where there were duplicate or overlapping publications, the most recent and/or comprehensive study was included in the systematic review.
Inclusion criteria After a duplicate check, titles and abstracts of the obtained results were screened by two reviewers to determine eligibility for inclusion in the systematic review. In case eligibility could not be resolved based on the abstract, full length articles were obtained, translated where necessary and reviewed. Uncertainties were resolved by group consensus consisting of five researchers. For the outcome ‘ incidence’ and ‘prevalence’, papers were included in the review if they: (1) described the population in the context of the general population; and (2) included main etiological subgroups (paraplegia, tetraplegia, TSCI, NTSCI, SB). For ‘mortality ’ papers had to at least define one or more of the following: (1) mortality rates (stratified or not); (2) relative mortality; (3) standardized mortality ratios (SMRs); and (4) life expectancy. In the case of ‘etiology ’, studies were included if they reported on: (1) TSCI or NTSCI; (2) distribution of TSCI and
208
Technical appendix A
Data extraction Data were extracted from the full-length papers on main study characteristics, information regarding the inclusion and exclusion criteria, and all relevant data towards the outcomes (incidence, prevalence, etiology, mortality, cost). The quality of the data extraction was tested using existing systematic reviews retrieved by the search to cross-check data reported. Final summary table data were again cross-checked and compared to the original reporting papers by three group members. Where relevant data were only available graphically (e.g. a Kaplan–Meier plot for cumulative survival), scanned graphs were converted to data using the graph digitizer software. Furthermore, for studies that provided information on the total number of TSCI or NTSCI cases over a given time period in a well defined catchment area (mostly country), but not incidence rates, country-specific population size estimates were obtained from available Internet resources (country-specific National Statistical Office or Global Burden of Disease database) to estimate crude incidence rates.
Figure 2.5. Distribution of traumatic SCI by WHO region Studies reporting on TSCI etiology in adult and mixed adult/paediatric populations were selected for calculation of regional etiology sum scores based on a variety of criteria. When available, nationwide or largest studies from most recent years were selected, but only those that reported on both road traffic crashes and falls. Overlap in years reported led to exclusion of studies with lesser stratification across etiologies or reporting of etiology type in the category ‘other’. For the USA the most-recent NSCISC 2011 annual report (6) was used as primary data source, also to avoid issues of data overlap by year and subgroups used in specific studies relying on Model Systems data. Regional estimates for the overall etiology of TSCI were derived in two steps. First, a country-specific TSCI etiology was derived using the weighted-average distribution of causes by factoring in the sample size of the available studies. Second, a regional estimate of TSCI was calculated using the weighted-average distribution for cause-specific TSCI by country by factoring in the 2011 population size of countries that provided data. Population data were taken from the online resource of the United Nations statistical office (7). Of note, available data for Taiwan, China (8), were used to calculate the estimate for China, but they had little impact on the overall estimate given the relatively small sample size.
Recalculation of estimates In cases where population averages were not available, we derived population average estimates using reported stratified estimates that were weighted for the relative population of the respective strata.
References 1. Liberati A et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Medicine, 2009, 6:e1000100. doi: http://dx.doi.org/10.1371/journal. pmed.1000100 PMID:19621070 Endorsers PRISMA. (http://www.prisma-statement.org/endorsers.htm, accessed 26.6.2013). Biering-Sørensen F et al. International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi. org/10.1038/sj.sc.3101930 PMID:16955072 ISCIDS. The International SCI Data Sets. International Spinal Cord Society (ISCoS) (http://www.iscos.org.uk/page. php?content=20, accessed 22 May 2013). New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord, advance online publication, January 2013. doi: 10.1038/sc.2012.160. doi: http://dx.doi.org/10.1038/sc.2012.160
2. 3. 4. 5.
209
International Perspectives on Spinal Cord Injury
6. 7. 8.
National Spinal Cord Injury Statistical Center. Complete Public Version of the 2011 Annual Statistical Report for the Spinal Cord Injury Model System. Birmingham, Alabama, 2011. United Nations Statistics Division. (http://unstats.un.org, accessed 26.6.2013). Wu JC et al. Effects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of Neurotrauma, 2012, 29:889-897. doi: http:// dx.doi.org/10.1089/neu.2011.1777 PMID:21510819
210
Technical appendix B Limitations of the data sources used in Chapter 2 While all efforts have been made to use the best available data, there are several limitations in the data used in this chapter notably: ■ variation in SCI case definition and the inclusion criteria; ■ variation in representativeness of the available SCI data. The actual representativeness of the data is not always evident, i.e. whether national statistics draw on national, regional or subregional data; ■ variation in the level of completeness of the collected (local or national) data; ■ inadequate quality of methodological reporting. Several specific limitations were identified related to the main indicators used in this report. They are as follows: ■ Incidence: Source population of cases (catchment area) is often poorly defined, particularly in studies reporting on regional data, multicentre or single centre data (e.g. it is not always known if the hospital is the only regional referral centre for SCI). Furthermore, for incidence of TSCI, it is often unclear whether individuals that die from SCI at the time of injury are included. For NTSCI incidence, it is frequently unclear if people identified with SCI at the end-oflife care are included. ■ Prevalence: The reference population of cases is often poorly defined. Most countries do not have direct prevalence data available, and proxy data are difficult to access (e.g. insurance data, disability benefit data). As a result prevalence estimates are frequently derived from modelling studies that rely on a weak evidence base, involve bold assumptions, and hence have a large level of uncertainty. ■ Mortality: Methodological criteria and procedures for inclusion and exclusion of cases in the evaluation of cumulative mortality (e.g. Kaplan–Meier method) or modelling of mortality rates or risk factors for mortality (time to event analysis, Cox regression) are commonly not described. In particular, few studies report on loss to follow-up and the completeness of mortality ascertainment (right censoring). Furthermore, it is often not clear if early mortality cases are included in analysis (left censoring). ■ Etiology: Future studies should more strictly adhere to the international recommendations of ISCoS on the classification and hierarchical reporting of TSCI and NTSCI etiology. In addition, TSCI cases related to work and selfharm (suicide attempts) need systematic documentation (i.e. on top of the ISCoS classification; falls stratified by work and suicide, etc). 211
Technical appendix C Meta-analysis of spina bifida data A random effects meta-analysis on the extracted annual incidence* data for spina bifida was conducted to derive a summary estimate for three types of available data. Data types, in increasing order of completeness and preferential usage in the analysis, included live birth data only; live and stillbirth data; and live, stillbirth, and termination of pregnancy data. Meta-analyses were conducted with the statistical package STATA, version 12.1, using the command ‘metan’. The annual incidence rates with standard errors were used as point estimates and measures of variance for individual studies, respectively. Results of the analyses are graphically displayed as Forest plots and are stratified by data type. Some of the variation observed among reported incidence rates could be due to several factors, including race, socioeconomic status, measurement techniques, and cultural influences (1, 2). To identify the impact of the observed variation on overall rates, a sensitivity analysis was conducted by excluding those studies that appeared to be particularly heterogeneous compared to the majority of studies, namely the study conducted by Alasfoor et al. in Oman (3) and studies for China conducted by Li et al. (4, 5). When excluding only the Oman study, the incidence rate of spina bifida dropped to 7.4/10 000. Exclusion of the two studies by Li et al. resulted in an overall incidence rate of 8.4/10 000, while exclusion of both the Oman study and the two China studies resulted in an incidence rate of 7.2/10 000. A subgroup analysis was performed, in addition to the meta-analysis results, that considered the impact of the type of data used in each study included in the meta-analysis for incidence rate of spina bifida. The subgroup analysis revealed that the incidence rate observed among those studies using live birth data only was 4.5/10 000, compared to the incidence rate calculated including all studies regardless of data type, which was 8.4/10 000. * Note: In the literature on spina bifida, the terms ‘prevalence’ and ‘incidence’ are used inconsistently. Rothman et al. (6) define the proportion of babies born with some malformation as a prevalence proportion and not an incidence rate. The incidence of malformations is then the occurrence among the population of embryos. Nonetheless, for this report the term ‘incidence’ is used when reporting rates of spina bifida, as studies which used different data types, including data on terminations of pregnancy, were included.
213
International Perspectives on Spinal Cord Injury
References 1. Gardner BR, Strickland M, Correa A. Application of the automated spatial surveillance program to birth defects surveillance data. [Part A]. Birth Defects Research Part A., Clinical and Molecular Teratology Teratol, 2007, 79:559-564. doi: http://dx.doi. org/10.1002/bdra.20363 PMID:17385687 Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 Li ZW et al. Prevalence of major external birth defects in high and low risk areas in China, 2003. Zhonghua Liu Xing Bing Xue Za Zhi, 2005, 26:252-257. PMID:15941530 Li ZW et al. Extremely high prevalence of neural tube defects in a 4-county area in Shanxi Province, China. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2006, 76:237-240. doi: http://dx.doi.org/10.1002/bdra.20248 PMID:16575897 Rothman KJ, Greenland S, Lash TL, eds. Modern Epidemiology. 3rd ed. Philadelphia, Wolters Kluwer Health/Lippincott Williams & Wilkins, 2008.
2. 3. 4. 5. 6.
214
Technical appendix D Meta-analysis of the effect of folic acid food fortification on spina bifida incidence rates The burden (additional cases of spina bifida pregnancies due to the lack of folic acid food fortification (FAFF)) was estimated under the following assumptions and considerations: the global number of live births serves as a proxy for all pregnancies (including spontaneous abortions, stillbirths, and terminations of pregnancy (TOPs)) because spina bifida is a relatively rare condition. Therefore undetected cases would not have a large effect on the estimated incidence and FAFF would have a similar impact on incidence of spina bifida worldwide. For the calculation of burden, regional estimates of spina bifida background incidence rates were calculated to address regional variation so as to obtain a more precise estimate. The estimated number of potentially preventable spina bifida pregnancies was based on the effect size of FAFF calculated from only those studies that reported incidence rate (IR) of spina bifida in live births, because worldwide birth data were only available for live births. Additionally, a meta-regression was performed to determine if any of the between-study heterogeneity could be explained by certain measured covariates, namely incidence rate pre-FAFF and type of data used (live birth only, live, stillbirth or TOPs). The meta-regression was performed using STATA, version 12.1, with ‘metareg’ command. Results from meta-regression suggested that the incidence rate of spina bifida before FAFF legislation was significantly associated with effect of FAFF. However, no significant association was observed between type of birth data used and effect of FAFF. Overall, the model explained 92% of the heterogeneity seen in the original meta-analysis (see Figure D.1). The impact of background incidence rate pre-FAFF on the effect size of FAFF was taken into consideration when calculating the number of potentially avoidable spina bifida pregnancies; this information was obtained from the meta-regression. Therefore, if the burden of spina bifida was estimated using incidence rates and effect sizes calculated from live birth data only, potentially 37 979 pregnancies with spina bifida could be prevented. Since only live births were included, it is likely that the number of potentially preventable pregnancies is underestimated for several reasons. For example, a pregnancy may be more likely to be terminated if there is a case of spina bifida. Also, although the literature does not suggest that there is an increased risk of stillbirths in pregnancies with spina bifida, the lack of information on stillbirths affected by spina bifida might cause an attenuation of the true incidence.
215
International Perspectives on Spinal Cord Injury
Figure D.1. Spina bifida incidence rates before FAFF and the effect of FAFF (risk ratio) 0.8
Risk ratio (after/before)
0.6
0.4
0.2
0 0 10 20 30 40 50 60 70 Spina bi da incidence rate before FAFF per 10 000 pregnancies Fit birth data only Estimates birth-only studies Fit all other birth types Estimates other studies
216
Glossary
Accessibility The extent to which an environment, service or product can be used by as many people as possible, and in particular by people with disabilities.
Co-morbidity An additional health condition that an individual may also experience, which is independent of and unrelated to the primary health condition.
Accessibility standard A standard is a level of quality accepted as the norm. The principle of accessibility may be mandated in law or by treaty, and then specified in detail according to regulations, standards or codes, which may be compulsory or voluntary.
Convention on the Rights of Persons with Disabilities (CRPD) An international treaty, adopted at the United Nations in 2006, that specifies both general human rights principles of dignity, nondiscrimination, participation, accessibility and equality for persons with disabilities, as well as specific human rights relating to all areas of social life – family and community, education, employment and access to health and social resources. CRPD has an explicit social and economic developmental dimension.
Assistive device or technology (AT) Any item or piece of equipment, whether acquired commercially, modified or customized, that is used to increase, maintain or help a person to perform a task or activity.
Disability In the ICF, an umbrella term for impairments, activity limitations and participation restrictions, denoting the negative aspects of the interaction between an individual with a health condition and environmental and personal factors.
Community-based rehabilitation (CBR) A strategy within general community development for rehabilitation, equalization of opportunities, poverty reduction, and social inclusion of people with disabilities, that is implemented through the combined efforts of people with disabilities, their families, and relevant governmental and nongovernmental health, education, vocational, social and other services.
Enabling environments Physical and human-built environments that support a person’s participation 217
International Perspectives on Spinal Cord Injury
through the removal of barriers and the provision of facilitators.
International Classification of External Causes of Injury (ICECI) A WHO classification that classifies types of injuries, their circumstances and their causes and that is used for measuring and monitoring the occurrence of injuries.
Environmental factor In the ICF, any feature of the physical, social and attitudinal environment in which people live and conduct their lives, e.g. products and technology, the natural environment, support and relationships, attitudes and services, systems and policies.
International Classification of Functioning, Disability and Health (ICF) A WHO classification that provides a standard language and conceptual framework for the description of health and health-related states of functioning associated with the experience of health conditions.
Functioning In the ICF, a term for body functions, body structures, activities and participation. It denotes the positive aspects of the interaction between an individual (with a health v idual’s contextual condition) and that indi factors (environmental and personal factors). The term ‘function’ refers only to the functions of the body.
International SCI Data Sets Data sets composed of data about core categories of SCI-related physiological and psychological features and quality of life, which are appropriate for use in trials to test novel therapies and rehabilitative strategies and devices.
Health condition, secondary An additional health condition that an individual with a primary health condition may experience and that arises from an increased susceptibility or vulnerability caused by the primary health condition, e.g. pressure ulcers.
Kneeling buses Buses designed to laterally lower on the passenger entrance side for easier access for people with mobility difficulties.
Impairment In the ICF, a significant deviation in body structure or physiological function of body systems (including mental functions), based on statistical population norms.
Mortality rate The proportion of deaths in a defined population or group of individuals in a defined area and period of time.
Incidence of SCI The number of new cases of SCI during a specified time period.
Non-traumatic spinal cord Injury (NTSCI) Any damage to the spinal cord from a nontraumatic cause, e.g. congenital/genetic malformations such as spina bifida or acquired damage caused by infection, loss of blood supply (infarction), compression by a cancer
218
Glossary
or tumour, or by slow degeneration of the vertebrae because of osteoarthritis.
Paratransit An alternative mode of flexible private or public transportation (e.g. mini-buses or taxis) that does not follow fixed routes or schedules, designed to meet the transportation needs of people with disabilities, the elderly, or anyone who is unable to use mainstream modes of transportation. Also known as Special Transport Services (STS).
the functioning of a body part; prosthetic interventions involve an artificial external replacement of a body part.
Reasonable accommodation Necessary and appropriate modifications or adjustments, not imposing a disproportionate or undue burden, to ensure that people with disabilities can exercise their human rights on an equal basis with others.
Rehabilitation A set of measures that assists individuals who experience disability (or are likely to experience it) to achieve and maintain optimal functioning in interaction with their environment.
Pressure ulcers (sores) Localized injuries to the skin and underlying tissue, usually over a bone, that result from pressure alone or in combination with friction and that range from mild sores or wounds to serious tissue destruction.
Respite care The provision of short-term, temporary professional replacement caregiving for informal caregivers, such as family members, for people needing care who might otherwise need to be permanently placed in a facility outside the home.
Prevalence of SCI The sum total of all cases of SCI found in a given population and at a given time.
Progressive realization A principle of human rights law that acknowledges that some economic and social human rights – such as the right to health – may be difficult for states to achieve in a short period because of resource constraints, but that requires them to achieve what they can within their means, and to achieve progressively more as resources become available.
Schools – inclusive, integrated, special In inclusive schools, children with disabilities attend regular classes with age-appropriate peers, follow the curriculum to the extent that is feasible, and are provided with additional resources and support according to need. In integrated schools, children with disabilities are provided with separate classes and additional resources within mainstream schools. In special schools (also called segregated schools), children with disabilities are provided with specialized services in separate settings from mainstream educational institutions.
Prosthetist–orthotist A health professional who provides prosthetic and orthotic care and other mobility devices designed to improve functioning. Orthotic care involves external appliances designed to support, straighten or improve
219
International Perspectives on Spinal Cord Injury
Social housing Social housing is housing provided, usually by local governments or NGOs, at low cost and on a secure basis to people with housing needs (also called “affordable housing” or “public housing”).
the pedestrian access, the vehicles and the transfer points.
Universal design Principles for the design of products, environments, programmes and services that can be used by all people, to the greatest extent possible, without the need for additional adaptation or specialized design.
Social protection Social programmes that aim to reduce deprivation and unmet need arising from conditions such as poverty, unemployment, old age and disability.
Vocational rehabilitation Programmes designed to restore or develop the capabilities of people with disabilities to secure, retain and advance in suitable employment, e.g. job training, job counselling, and job placement services.
Spinal cord injury (SCI) Any injury to the spinal cord from traumatic and non-traumatic causes (see also definitions of traumatic and non-traumatic SCI in this glossary). Damage or trauma to the spinal cord that results in an impairment or loss of function.
Spinal cord injury registry A database that collects uniform clinical and other information about spinal cord injury in a population over time to evaluate outcomes for a population for scientific, clinical or policy purposes.
Traumatic spinal cord injury (TSCI) Any injury to the spinal cord that is caused by trauma or damage resulting from the application of an external force of any magnitude, e.g. in the event of road traffic crashes, falls or acts of violence.
Travel chain All elements that make up a journey, from starting point to destination, including
220
Index
Page numbers in italic indicate information within figures and tables
[A] Able Disabled All People Together (ADAPT) 175 academia 203 acceptance 133 accessibility 149, 199, 202, 217 cross-cutting measures 151–3, 160 health-care services 100, 103 see also enabling environments
appropriate technology 71 ASIA Impairment Scale (ASIA A-E) 30 Asian Spinal Cord Network 135 aspiration 70 assistance 126–9 assistive technology acceptability 100 cost factors 109–10 definition 71, 217 functional outcomes 77 human resources 104 loan and rental programmes 110 low-income countries 106, 107, 199 middle-income countries 106, 199 models of production and distribution 107 need for 78 outcomes 81, 112 research and innovation 110–11 schools 174 service delivery 99, 107, 199 types of 78–81 unmet needs 96–7 vital component of rehabilitation 201 workplace 183
accessibility maintenance audit 159 accessibility standard 152, 217 “Accessible Christchurch” project 160 accommodation 103, 169, 219 schools 174–5 workplace 182–4
activity limitation 68–9 actors 202 acute care 67, 72–3, 200, 201 adjustment to SCI 77–8, 132–7 affordability 109–10, 113–14 Afghanistan small SCI units 101 violence-related SCI 20
Africa assistive technology 99 housing 150 mining injuries 52, 54 spina bifida 172
Assistive Technology Act (1998) 107 atelectasis 70 attitudes 124–6, 138, 176–7, 199, 202 augmentative and alternative communication 80 Australia attitudes of health professionals 125 availability of services 100 central registry of SCI 28 costs of SCI 26, 28, 199 flying clinics 102 housing registers 156 human resources 104, 105 incidence of non-traumatic SCI 22, 22 incidence of traumatic SCI 17, 18–19 income issues 185 mortality risk 24, 24
age non-traumatic SCI 22 traumatic SCI 18–19, 21
ageing population 15, 22, 154, 198 alcohol-related SCI 20 Americans with Disabilities Act (1990) 152, 182 antidiscrimination legislation 158, 182 appraisal theory 133
221
International Perspectives on Spinal Cord Injury
pre-hospital management 25 prevalence of SCI 15, 16, 16, 17, 198 reduction in road traffic crash-related SCI 200 secondary conditions 25 violence-related SCI 20
Rick Hansen Spinal Cord Injury Registry 28, 29–30 self-employment 184 social assistance 185 violence-related SCI 20
autoimmune disorders 22 autonomic dysreflexia 69 autonomic neurological function 68 autonomy 81 availability of services 100
cancer prevention of 52 secondary 25
car travel 150, 157 cardiovascular system 83 care formal 128 informal 126–8
[B] Back-Up Trust 134, 175 Bangladesh community attitudes 124 employment issues 178, 181, 182 social support 127
caregivers 126–7 assistive technology 81 children as 132 training and support for 105, 127–8
bathing 80 bed-blocking 150 “benefit trap” 185 benefits system 185–6 bladder management 69, 73–4 BokSmart 57 bomb explosions 51 bone changes 70 Boston City Hospital 6 Botswana, disability awareness 176 bowel function 74, 82 Brazil accessibility campaigns 152 demographic trends in traumatic SCI 21 informal care 126, 127 small SCI units 101 transportation 157 violence-related SCI 20
case definitions 31 case fatality rates 14 catheterization 69, 73, 74 cauda equina 5, 68 Center for Independent Living (Brazil) 152 central registries 28, 29, 32, 220 centralization of treatment 99 Centre for the Rehabilitation of the Paralysed 181 cervical SCI 6 child passenger restraints 49 children, as caregivers 132 see also paediatric SCI China falls-related SCI 21, 21 family relationships 130 incidence of traumatic SCI 17 partner relationships 130 rehabilitation after Sichuan earthquake 98
breathing 70 Brukslinjen project 156 Bulgaria, public buildings 158 buses 156
[C] Canada alcohol/drug-related SCI 20 community attitudes 124 costs of SCI 26–7, 27 housing 153, 155, 156 incidence of non-traumatic SCI 22 incidence of traumatic SCI 17, 18, 19 mortality risk 25 municipal accessibility toolkit 158 prevalence of SCI 15, 16, 16, 17, 198
chronic health conditions 82 circulatory complications 69 classroom assistants 174, 177 classroom interventions 124 cognitive behavioural therapy 134 collapsed lung 70 college education 171, 173–4 Colombia firearms legislation 51 training in accessibility issues 152
communication devices 80 community attitudes 124 community-based care 128 community-based rehabilitation 101–2, 127, 217 co-morbidity 71, 78, 217 compensation schemes 110 complete injury 6, 68 complications of SCI see secondary conditions
222
Index
computer technology 80, 111 condom catheters 73 conservative management 72, 73 Consortium for Research on Educational Access, Transitions and Equity (CREATE) 174 consumer organizations and networks 135, 136 contact with disabled 124 continuing professional development 105 conus medullaris 4, 68 Convention on the Rights of Persons with Disabilities (CRPD) 7–8, 13, 67, 97, 103, 104, 123, 149, 169, 217 coordination of services 101 coping effectiveness training 134 coping skills 130, 133 costs of SCI 4, 15, 26–8, 109–10, 153, 199 coughing 70 Council of Canadians with Disabilities 152 CREATE 174 culture of accessibility 160 cycle rickshaws 156–7
diving 55, 58 divorce 130, 199 domestic activities devices 80 dressing devices 80 drink-driving laws 49 driving 80 drug-related SCI 20
[E] e-learning 105 earnings 185 earthquakes 58 eating and drinking devices 80 education participation 169, 170–7, 199 accommodations 174–5 changing attitudes 176–7 environmental barriers 174 funding 175 legislation and policy 171–2 recommendations 186–7 return to school 171, 172–3, 201 social support 175 transition from school 173–4 types of schools 219–20
[D] data collection 32–3, 107, 109, 202 data issues and concerns 31–2 data sources 28–30, 211 dating 130 daytime running lights 49 death see mortality risk deep sea diving 58 deep vein thrombosis 69 definitions 31 degenerative conditions 22 demographic trends 21 Denmark education legislation and policies 171 social housing. 155
educational resources 103, 105 El Salvador, firearms legislation 51 emergency care see pre-hospital care employment participation 169, 177–86, 199, 201, 202 accommodations 182–4 environmental barriers 178–9, 183 legislation 182 overcoming misconceptions 182 recommendations 187 self-employment 184–5, 202 supported employment 180–1 vocational training 179–81
depression 78, 133, 179, 198 design health technology 106–7 universal design 71, 151, 220
empowerment 201 enabling environments 149, 199, 218 education participation 174 employment participation 178–9, 183 housing 150, 153–6, 160–1 public buildings 151, 157–60, 161 recommendations 160–1 transportation 80, 149, 150–1, 156–7, 161, 178–9, 199
diaphragm pacemakers 70, 71 direct costs of SCI 26, 27 disability conceptual change 6 definition 217 social response to 6–7
disability awareness 124, 176 disabled people’s movement 6, 136 disabled people’s organizations 203 Disabled Students Allowance 175
environmental control systems 81, 81 environmental factor 218 see also enabling environments environmental modifications 71 epidemiological indicators for SCI case fatality rates 14 data issues and concerns 31–2 data sources 28–30, 211
223
International Perspectives on Spinal Cord Injury
etiology 14, 19–20, 22 incidence 14, 17–19, 22, 197, 218 prevalence 14, 15–17, 197–8, 219 recommendations 32–3 standardized mortality ratio 14, 24 systematic review methods 207–9
education 175 health systems strengthening 109–10, 113–14 self-employment 184
[G] gender differences caregiver role 126–7 non-traumatic SCI 22 traumatic SCI 18, 21
erectile dysfunction 74, 75 Escola Aberta 174 Estonia
incidence of traumatic SCI 17 standardized mortality ratio 24
etiology of SCI 14, 19–20, 22 European Spinal Cord Injury Federation (ESCIF) 135 policy statement 99
genitourinary system 69–70, 82 Germany public buildings 158 sports participation 137
evidence-based guidelines 112 exercise 77, 128–9
[F] falls 20, 21, 198 prevention 49–50
Ghana, income issues 185 Global Spinal Cord Injury Consumer Network 135 governance 97–8, 112–13 government action 202–3 graduated driver licensing schemes 49 Greece gender differences in incidence of traumatic SCI 18 partner relationships 130
families as caregivers 126–8 relationships 129–32, 199 training and support for 105
fertility 75 field sports 58 Fiji, informal care 127 financing see funding Finland attempted suicide-related SCI 20 incidence of traumatic SCI 17, 18 mortality risk 24, 24 prevalence of traumatic SCI 15, 16, 198 private transportation 157
grooming devices 80 Guatemala, assistive technology 107 guns 20, 49, 51, 200 Guttmann, Ludwig 6
[H]
Haddon matrix 46 Haiti, changing attitudes 125 health care needs 67, 72–84 acute care 67, 72–3, 200, 201 barriers to services 100 maintenance of health 67, 81–3, 200 mortality risk 25–6 post-acute care 67, 73–8, 201 pre-hospital care 25, 67, 72, 200 recommendations 83–4 rehabilitation 67, 73–8, 201 unmet needs 95–6
firearms 20, 49, 51, 200 flex housing 155 FLIPPER 156 flying 150 folic acid supplements 52, 53–4, 200, 215–16 formal care 128 France adjustment to SCI 133 attitudes of health professionals 125 disabled people’s movement 136 education participation 171, 175 incidence of traumatic SCI 17, 18 self-help groups 135 sport-related SCI 20
health impact of SCI 68–72 health information standards 30–1 health information systems 107, 109, 113 health maintenance 67, 81–3, 200 health professionals 203 attitudes 125–6 with disabilities 126
functioning 75–7, 218 funding accessible housing 153, 154–5
health sector response to SCI 201 health settings data 28, 29 health systems strengthening 95, 97–114 challenge of SCI 7 financing 109–10, 113–14
224
Index
health information systems 107, 109, 113 health technologies 105–7, 113 human resources 103–5, 113 leadership and governance 97–8, 112–13 recommendations 112–14 research 110–12, 114 service delivery 98–103, 107, 113
India educational support 175 employment issues 178, 181, 182 income issues 185 infection-related SCI 22 partner relationships 130
health technologies 105–7, 113 heart disease 25, 82 heterotopic ossification 70 high-income countries central registries of SCI 28 community-based care 128 costs of SCI 109–10 education funding 175 education legislation and policies 171 increasing prevalence of SCI 198 life expectancy 24 mortality risk 3, 15, 198 secondary conditions 24–5 self-employment 184 social protection 185 unmet needs for assistive technology 96 vocational training 179, 180
historical background to SCI 6–7 HIV 51 home adaptations 153 home schooling 172 hope 134 horseback riding 58 housing 150, 153–6, 160–1 housing registers 155–6 human resources 103–5, 113 human rights 7, 8 hygiene devices 80 hypotension 69
indirect costs of SCI 26, 27 infectious disease 22, 51–2, 52 influenza 24, 25 informal care 126–8 information standards 30–1 information systems 107, 109, 113 insurance data 29, 30 insurance schemes 110 integrated schools 219–20 intermittent catheterization 73, 74 International Classification of Diseases (ICD) 30, 31–2 International Classification of External Cause of Injury (ICECI) 30, 32, 218 International Classification of Functioning, Disability and Health (ICF) 7, 8, 32, 218 International SCI Data Sets 30–1, 32, 218 International Standards for Neurological Classification of SCI 30, 32 International Standards Organization (ISO) 106 Internet resources 103 Iran coping skills 130 prevalence of traumatic SCI 15
Ireland funding education 175 gender differences in incidence of traumatic SCI 18 incidence of traumatic SCI 17 public buildings 158
ischaemic heart disease 25, 82 Israel attempted suicide-related SCI 20 spina bifida prevention 52
[I] Iceland incidence of traumatic SCI 17 prevalence of traumatic SCI 15
Italy, FLIPPER transport 156
ICF Core Sets for SCI 31 impact of SCI 4, 68–72, 198–9 impairment 218 in-dwelling catheters 73 incidence of SCI 14, 17–19, 22, 197, 218 inclusive schools 219 income from employment 185 incomplete injury 6, 68 independence 81, 124, 132, 172 Independent Living 7
[J] Japan, accessibility issues 152 Jobs Accommodation Network 183
[K] Kaleidoscope programme 180 Kenya community attitudes 124 education participation 170, 174 housing 153
225
International Perspectives on Spinal Cord Injury
informal care 127 parental education 132 social support 127–8
income issues 185 training in accessibility issues 152
keyboard design 111 kneeling buses 156, 218 knife injuries 49, 51, 200 knowledge gaps 104, 105, 153, 199
[L] leadership 97–8, 112–13 Lebanon, disability awareness 176 legislation 49, 51, 97, 157–8, 171–2, 182 leisure activity-related SCI 20, 198 prevention 55–8, 200
“Map of Accessible Sofia” 158 margin of health 81, 198–9, 200 marital status 131 mechanical ventilation 70 medical care see health care needs medical definitions 31 medical dimension of SCI 4–6 medical record keeping 31 menstruation 74 mental health 77–8, 83, 133 Mexico accessibility campaigns 152 transportation 157
level of injury costs 26 extent of impairment 6 health impact 68 mortality risk 24
microfinance 184 middle-income countries assistive technology 106, 199 costs of SCI 109 education participation 170, 171, 174 employment issues 178 human resources 104 life with SCI 3 prevalence of SCI 198 self-help groups 135–6 social protection 185 unmet needs for assistive technology 96 wheelchair provision 100
Libre Acceso 152 life-course model 132 life expectancy 22, 24–6, 81, 198 life satisfaction 132–3 Lifecycle Housing programme 155 “Lifetime Homes” 154 limb orthoses 79 London Accessible Housing Register 155 low-income countries assistive technology 106, 107, 199 costs of SCI 109 education participation 170, 171, 174, 175 employment issues 178 formal care 128 housing 150 human resources 104 mining injuries 52, 54 mortality risk 3, 15 prevalence of SCI 198 secondary conditions 25, 198 self-employment 184 self-help groups 135–6 unmet needs for assistive technology 96 wheelchair provision 100, 106
minibuses 156–7 mining 52, 54 mobile consultation teams 101 mobility devices 78, 79–80 mortality rate 218 mortality risk 3, 15, 22, 24–6, 198 Motivation 103, 135 Motivation Romania Foundation (MRF) 108 motorcycle helmets 49 motorcycle travel 157 Mozambique assistive technology 99 transportation 157
lumbar SCI 6 lung capacity 70
Munro, Donald 6 musculoskeletal pain 71 musculoskeletal system 83
[M]
[N]
Malawi, assistive technology 99 Malaysia education participation 174 employment issues 178
Namibia, assistive technology 99 narrower margin of health 81, 198–9, 200 National Resource Centre for Inclusion 175 national surveys 28, 29, 30
226
Index
natural disasters 58, 160 neoplastic tumours 22 Nepal falls-related SCI 20 income issues 185
nerve roots 5 Netherlands employment issues 178, 182 incidence of traumatic SCI 17 informal care 127 life satisfaction after SCI 133 partner relationships 130 RegioTaxi KAN transport 156 social assistance 185 social housing 155 unmet needs for assistive technology 96–7 wheelchair provision 199
housing finance 155 incidence of traumatic SCI 18, 19 prevalence of traumatic SCI 15 secondary conditions 25 standardized mortality ratio 24 violence-related SCI 20
[O] observerships 105 occupational injuries 20, 198 prevention 52, 54, 200
online resources 103, 176 orthoses 79 orthostatic hypotension 69 osteoporosis 70 outreach model 101
neural tube defects 52, 200 neurogenic bowel 74 neurological control of devices 111 neurological function 25, 68, 83 neuromusculoskeletal complications 70 neuropathic pain 71 New Zealand “Accessible Christchurch” project 160 compensation scheme 110 Kaleidoscope vocational rehabilitation programme 180 personal assistants 129 rugby injury prevention 56–7 self-help groups 134
[P] paediatric SCI assistive technology 81 family relationships 131, 199 traumatic SCI incidence 19
pain 6, 71 Pakistan, bowel management 74 Paralympic Games 6 paraplegia 6 costs 26 health impact 68 mortality risk 24 projected functional outcomes 76
NHV model 98 Nigeria caregiver training and support 105 costs of SCI 27, 109, 199 mortality risk 25 public buildings 151 road traffic crashes 20 sports-related SCI 20
paratransit 156, 157, 219 parenting 131–2, 176 participation package 186 participation restriction 68–9 assistive technology 81
non-governmental organizations (NGOs) 46, 99, 103, 105, 106, 109, 128, 135–6, 175, 184, 203 non-traumatic SCI acute care 73 causes 6 costs 26, 27 definition 219 etiology 22 incidence 22 increasing incidence 17, 197 prevalence 16, 17, 198 prevention 51–2 underreporting 31
Norway education funding 175
partners 130–1 peer mentoring/support 78, 103, 105, 132, 136, 173, 181 person-driven approaches 102–3 personal assistants 128–9, 138 Peru, infection-related SCI 22 phrenic pacemakers 70 physical activity 136–7 physical environment see enabling environments pneumonia 24, 25, 70 Poland, public buildings 158 policies 4, 97, 157–8, 171–2, 199 Portugal, education participation 174 positioning systems 79 post-acute medical care 67, 73–8, 201
227
International Perspectives on Spinal Cord Injury
post-secondary education 171, 173–4 post-traumatic stress disorder 131, 133 poverty 3, 109, 185 Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) 207 pregnancy 75 pre-hospital care 25, 67, 72, 200 pressure ulcers 25, 71–2, 219 prevalence of SCI 14, 15–17, 197–8, 219 prevention of SCI falls 49–50 leisure-related injuries 55–8, 200 natural disasters 58 non-traumatic SCI 51–2 occupational injuries 52, 54, 200 primary/secondary/tertiary prevention 45 recommendations 59 road traffic crashes 46–9, 199–200 sports injuries 55–8, 200 traumatic SCI 45–51 violence 49, 51, 200
rehabilitation 67, 73–8, 201 adjustment to SCI 133–4 community-based 101–2, 127, 217 definition 73, 219 professional training 104 unmet needs 96–7
relationship counselling 131 relationships 129–32, 199 religion 130 reproductive health 74–5, 83 Republic of Korea, sports-related SCI 20 research into SCI 7, 202 accessibility issues 152 attitudes, relationships and adjustment 138 data collection 33 emerging treatments 110–12 health systems strengthening 110–12, 114
primary care knowledge gaps 104, 199 unmet needs 96
primary prevention 45 private sector 99, 153–4, 203–4 private transportation 150, 157 progressive realization 149, 158, 219 prosthetist–orthotist 219 psychological impact of SCI 179, 198 see also mental health psychological interventions 134 public buildings 151, 157–60, 161 public health 197–8 public transportation 150, 156–7, 161
residential care 128 resource allocation 4 respiratory failure 70 respiratory system 24, 25, 70–1, 83 respite care 127, 128, 219 Rick Hansen Spinal Cord Injury Registry 28, 29–30 road design 49 road traffic crashes 19–20, 21, 198 prevention 46–9, 199–200
robotics 111 Romania. wheelchair user services 108 rugby 56–7, 58 RugbySmart 56–7 Rwanda, housing 156
[S] safe systems approach 46–7, 199–200 school administrators 176 schooling see education participation seat-belts 19–20, 49, 200 seating systems 79 secondary conditions 69–72, 82, 198 definition 218 employment issues 178 mortality risk 24–5 preventable 96
[Q]
Qatar, incidence of traumatic SCI 17, 18 quadriplegia 6 quality of life 3, 81, 132, 137, 199
[R] rail systems 156 rapid transit systems 156, 157 reasonable accommodation 103, 169, 174, 183, 219 reconstructive surgery 77 recreation-related SCI 20, 198 prevention 55–8, 200
RegioTaxi KAN 156 registries of SCI 28, 29, 32, 220
secondary prevention 45 secondary schooling 171 sectors 202 self-care devices 80 self-efficacy 134 self-employment 184–5, 202 self-esteem 132, 134
228
Index
self-harm 20, 51 self-help groups 134–6 self-management 103 service animals 183 service coordination 101 service delivery 98–103, 107, 113 service providers 203 severity of injury costs 26 extent of impairment 6 health impact 68 mortality risk 24
spina bifida costs 27 education participation 170–1, 172 employment issues 178 family dysfunction 131 incidence 23, 213 prevention 52, 52, 53–4, 200, 215–16 transition to adulthood 132 vocational counselling 180
spinal cord anatomy 4–5 Spinal Cord Injuries Australia (SCIA) 135 spinal cord injury definition 31, 220 historical dimension 6–7 medical dimension 4–6
sex differences caregiver role 126–7 non-traumatic SCI 22 traumatic SCI 18, 21
sexual function 74–5, 83, 130, 131 sharp objects 49, 51 sheltered workshops 181, 182 showering 80 sibling relationships 131, 132 Sierra Leone, mortality risk 3, 25 skiing 58 skin care 71–2, 83 small SCI units/teams 101 snowboarding 58 social assistance 185–6 social care professionals 203 social housing 150, 155, 220 social networks 132, 135, 175 social protection 185–6, 220 social support 127, 175, 179 society, challenge of SCI 7 socioceconomic background 109–10 South Africa education participation 171, 174 formal care 128 mining-related injury prevention 54–5 public buildings 151 rugby injury prevention 57 transportation 157 violence-related SCI 20
spinal cord injury registries 28, 29, 32, 220 spinal disease 22 “Spinal Essentials” 103 Spinal Injury Trust 134 spinal orthoses 79 spirituality 130 sports participation 6, 136–7 sports-related SCI 20, 21, 198 prevention 55–8, 200
Sri Lanka housing 153–4, 160 peer support 136 rehabilitation and adjustment to SCI 133
stakeholder involvement 59, 97, 99, 152 standardization of data 31 standardized mortality ratio 14, 24 stem cell therapy 111–12 Stoke Mandeville Hospital 6 strategies 97 subways 156 suicide attempts 20, 198 post-SCI 25
Spain incidence of non-traumatic SCI 22 incidence of traumatic SCI 17
supervision 105 support 105, 126–9, 137–8 supported employment 180–1 supportive group therapy 134 suprapubic catheters 73 surgical management 72–3 surgical reconstruction 77 Sweden Brukslinjen transport project 156 gender differences in incidence of traumatic SCI 18 infection-related SCI 22 partner relationships 130 personal assistance programme 129 social housing. 155
spasticity/spasms 70 special schools 220 special transport services 156 specialist support 101 speed limits 49
229
International Perspectives on Spinal Cord Injury
social networks 132
Switzerland, compensation scheme 110 symptoms of SCI 6 System of Health Accounts (SHA) 30
travel chain 150, 220 treatment for SCI 110–12 tuberculosis 22, 51–2, 198, 200 tumours 22 Turkey public buildings 151 violence-related SCI 20
[T] Tanzania, United Republic education participation 174 transportation 157
taxis 156–7 teacher attitudes 176, 177 technology 71, 105–7, 113 telemedicine 101 telerehabilitation 101 telework 184 tertiary prevention 45 tetraplegia 6 costs 26 health impact 68 mortality risk 24 projected functional outcomes 75–6
[U] Uganda accessibility standards 152 community-based rehabilitation 102 costs of SCI 109 funding education 175
underreporting of SCI 31 United Arab Emirates, public buildings 151 United Kingdom antidiscrimination legislation 158 demographic trends in traumatic SCI 21 education participation 171, 174, 175 housing 150, 153, 154, 155 partner relationships 130 prevention of weapons-related injuries 51 self-employment 184 self-help groups 134 taxi transport 156–7
Thailand, public buildings 151 thinner margin of health 81, 198–9, 200 thoracic SCI 6 toileting devices 80 tracheostomy 70 traffic calming 49 training accessibility issues 152 changing attitudes 124, 126 coping skills 134 families 105 non-health professionals 105 personal assistants 129 rehabilitation professionals 104 vocational 179–81
United Republic of Tanzania education participation 174 transportation 157
trams 156 transfer aids 79 transitional programmes 180 transportation 80, 149, 150–1, 156–7, 161, 178–9, 199 traumatic SCI acute care 72–3 causes 6 costs 26 definition 220 demographic trends 21 etiology 19–20 incidence 17–19, 197 pre-hospital care 72 prevalence 15, 16, 197–8 prevention 45–51
universal design 71, 151, 220 university education 171, 173–4 unmet needs 95–7 urethral catheters 73 urinary catheters 69, 73, 74 urinary tract infections 69–70 urological complications 25 USA accessibility standards 152 accessing of health-care services 100 alcohol/drug-related SCI 20 Assistive Technology Act (1998) 107 availability of services 100 central registry of SCI 28 college/university education 171 costs of SCI 26, 109–10 demographic trends in traumatic SCI 21 education funding 175 employment issues 183 family support interventions 127 gender differences in incidence of traumatic SCI 18 housing finance 155 incidence of traumatic SCI 18, 19
230
Index
mortality risk 24, 25 public buildings 151 race and employment 178 sports participation 137 sports-related SCI 20 violence-related SCI 20
[V] vascular disorders 22 Viet Nam, small SCI units 101 violence-related SCI 20, 21, 198 prevention 49, 51, 200
virtual environments 111 visitability 154 vocational rehabilitation 179, 180, 220 vocational training 179–81 voluntary organizations 127
[W]
walking aids 79 “Warsaw without Barriers” 158 welfare benefits 185–6 well-being 83 wheelchairs
accessibility standards 152 inadequate assessment for 100 need for 78 non-use and abandonment of 100, 106 service delivery 100 technological advances 110–11 types of 79 user services in Romania 108 workplace 183
work-related SCI 20, 198 prevention 52, 54, 200
working see employment participation World report on disability (WHO) 95, 126
[Z]
Zambia, assistive technology 99 Zimbabwe assistive technology 99 employment issues 178 income issues 185 public buildings 151
231
“Spinal cord injury need not be a death sentence. But this requires e ective emergency response and proper rehabilitation services, which are currently not available to the majority of people in the world. Once we have ensured survival, then the next step is to promote the human rights of people with spinal cord injury, alongside other persons with disabilities. All this is as much about awareness as it is about resources. I welcome this important report, because it will contribute to improved understanding and therefore better practice.” SHUAIB CHALKEN, UN SPECIAL RAPPORTEUR ON DISABILITY
“Spina bi da is no obstacle to a full and useful life. I’ve been a Paralympic champion, a wife, a mother, a broadcaster and a member of the upper house of the British Parliament. It’s taken grit and dedication, but I’m certainly not superhuman. All of this was only made possible because I could rely on good healthcare, inclusive education, appropriate wheelchairs, an accessible environment, and proper welfare bene ts. I hope that policy-makers everywhere will read this report, understand how to tackle the challenge of spinal cord injury, and take the necessary actions.” TANNI GREY THOMPSON, PARALYMPIC MEDALLIST AND MEMBER OF UK HOUSE OF LORDS
“Disability is not incapability, it is part of the marvelous diversity we are surrounded by. We need to understand that persons with disability do not want charity, but opportunities. Charity involves the presence of an inferior and a superior who, ‘generously’, gives what he does not need, while solidarity is given between equals, in a horizontal way among human beings who are di erent, but equal in their rights. We need to eliminate the barriers, construct a way to liberty: the liberty of being di erent. This is true inclusion.” LENÍN MORENO, FORMER VICE PRESIDENT OF THE REPUBLIC OF ECUADOR
ISBN 978 92 4 156466 3
Diese Publikation wurde im Jahr 2013 unter dem Titel International Perspectives on Spinal Cord Injury von der Weltgesundheitsorganisation (WHO) herausgegeben. © World Health Organization 2013 Die WHO hat die Übersetzung und Veröffentlichung einer deutschen Ausgabe seitens der Schweizer Paraplegiker-Forschung (SPF) genehmigt. Für die Qualität und Genauigkeit der Übersetzung ist ausschließlich die SPF verantwortlich. Im Fall von Abweichungen zwischen der englischen und der deutschen Version gilt die englische Originalversion als verbindlich und gültig. Querschnittlähmung – Internationale Perspektiven © Schweizer Paraplegiker-Forschung (SPF) 2014 ISBN 978-3-033-04640-5 Die SPF dankt Annette Frischmann und Denise Lachmann (www.sageundschreibe.eu) für diese Übersetzung. Gedruckt in Malta
Inhalt Vorwort Danksagung Liste der Beitragenden 1. Querschnittlähmung verstehen Ziele und Umfang dieses Berichts Querschnittlähmung – was ist das? Die medizinische Sicht Die historische Sicht von Querschnittlähmung Querschnittlähmung als Herausforderung für Gesundheitssysteme und die Gesellschaft Instrumente für ein besseres Verständnis der Erfahrungen von Querschnittgelähmten Überblick 2. Querschnittlähmung – global betrachtet Was wissen wir über Querschnittlähmung? Prävalenz von Querschnittlähmung Inzidenz von Querschnittlähmung Traumatische Querschnittlähmung Nicht-traumatische Querschnittlähmung Mortalität und Lebenserwartung Kosten in Verbindung mit Querschnittlähmung Daten und Evidenz zu Querschnittlähmung Datenquellen Informationsstandards Probleme und Bedenken in Bezug auf Daten De nitionen und Standardisierung der Daten Untererfassung Weitere Probleme Schlußfolgerung und Empfehlungen 3. Prävention von Querschnittlähmung Ursachen einer traumatischen Querschnittlähmung Straßenverkehrsunfälle Stürze Gewalt Ursachen von nicht-traumatischer Querschnittlähmung vii ix xi 1 4 5 5 7 8 8 10 13 17 17 20 20 25 27 30 33 33 34 36 36 37 37 37 49 52 52 56 57 58
iii
Aktivitäten, Örtlichkeiten und Gegebenheiten, die in Zusammenhang mit Querschnittlähmungen stehen Berufsbedingte Verletzungen Verletzungen beim Sport und in der Freizeit Naturkatastrophen Schlussfolgerung und Empfehlungen 4. Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation Die gesundheitlichen Auswirkungen von Querschnittlähmung verstehen Mögliche Komplikationen Bedarf an Gesundheitsversorgung Versorgung vor der Krankenhauseinlieferung und die Akutversorgung Postakute medizinische Versorgung und Rehabilitation Unterstützende Technologie Gesundheitserhaltung Schlussfolgerung und Empfehlungen 5. Stärkung von Gesundheitssystemen Unerfüllte Bedürfnisse Gesundheitsversorgung Rehabilitation Stärkung der Gesundheitssysteme Führungsrolle und Steuerung Bereitstellung von Diensten Personal Gesundheitstechnologien Gesundheitsinformationssysteme Finanzierung und Erschwinglichkeit Forschung Schlussfolgerung und Empfehlungen 6. Einstellungen, Beziehungen und Anpassung Einstellungen Einstellungen des weiteren Umfelds Einstellungen von Fachleuten der Gesundheitsberufe Hilfe und Unterstützung Informelle P ege Formelle P ege Persönliche Assistenz Familiäre Beziehungen Partner Beziehungen zu Eltern und Geschwistern
61 61 62 66 67 75 78 79 83 83 84 90 95 97 107 109 109 110 111 111 112 120 122 126 127 129 131 141 144 144 145 147 147 149 150 151 152 153
iv
Anpassung an die Querschnittlähmung Schlussfolgerung und Empfehlungen 7. Zugängliche Umwelten für Querschnittgelähmte Barrieren für Menschen mit Querschnittlähmung Wohnverhältnisse Personenbeförderung Ö entliche Gebäude Barrieren abbauen Übergreifende Maßnahmen Private Wohngebäude Ö entliche Verkehrsmittel Ö entliche Gebäude Schlussfolgerung und Empfehlungen 8. Bildung und Beschäftigung Querschnittlähmung und Zugang zu Bildung Barrieren im Bereich Bildung abbauen Gesetzgebung und Politik Unterstützung für Kinder mit Spina bi da Rückkehr in die Schule nach der Verletzung Übergang nach der Schulzeit Physische Barrieren abbauen Angemessene Vorkehrungen Bildung und Vorkehrungen nanzieren Soziale Unterstützung Einstellungsbedingte Barrieren abbauen Querschnittlähmung und Teilhabe an Beschäftigung Barrieren im Bereich Beschäftigung abbauen Berufsausbildung und unterstützte Beschäftigung Falsche Vorstellungen von Querschnittlähmung überwinden Vorkehrungen am Arbeitsplatz sicherstellen Selbstständigkeit Sozialer Schutz Schlussfolgerung und Empfehlungen 9. Der Weg nach vorne: Empfehlungen Die wichtigsten Ergebnisse 1. Querschnittlähmung ist ein erhebliches Problem für das Gesundheitswesen 2. Die Auswirkungen von Querschnittlähmung auf Betro ene und Gesellschaft sind erheblich 3. Barrieren beim Zugang zu Dienstleistungen sowie Umweltbarrieren schränken Partizipation ein und vermindern Lebensqualität
155 160 171 173 174 174 175 176 176 178 182 184 187 195 198 200 200 200 201 202 203 204 204 205 205 207 208 209 213 214 215 216 218 229 231 231 233 234 v
4. Querschnittlähmung ist vermeidbar 5. Querschnittlähmung kann überlebt werden 6. Querschnittlähmung muss nicht einer guten Gesundheit und der sozialen Eingliederung im Weg stehen Empfehlungen 1. Maßnahmen des Gesundheitssektors im Bereich Querschnittlähmung verbessern 2. Autonomie von Menschen mit Querschnittlähmung und deren Familien fördern 3. Negative Haltungen gegenüber Menschen mit Querschnittlähmung abbauen 4. Sicherstellen, dass Gebäude, Verkehrsmittel und Informationen zugänglich sind 5. Beschäftigung und Selbständigkeit unterstützen 6. Geeignete Forschung und Datensammlung fördern Die nächsten Schritte Schlussfolgerung Technischer Anhang A Technischer Anhang B Technischer Anhang C Technischer Anhang D Glossar Index
234 235 236 236 236 237 237 237 237 237 238 240 243 247 249 251 253 259
vi
Vorwort
Das internationale Symbol für Behinderung ist der Rollstuhl. Beim Stichwort „Menschen mit Behinderungen“ denken die meisten automatisch an einen jungen, querschnittgelähmten Mann. Diese Bilder sind weitverbreitet, gleichzeitig wissen wir aber, dass sie nicht der Realität entsprechen, denn Behinderung hat weltweit sehr viele Facetten. 15% der Menschen auf der Welt haben eine Behinderung – aber weniger als 0,1% der Weltbevölkerung leiden an einer Querschnittslähmung. Dennoch hat eine Querschnittslähmung verheerende Folgen. Dafür gibt es zwei Gründe: Zunächst einmal tritt sie häu g von einem Moment auf den nächsten ein. Ein Autofahrer ist in der Nacht müde und betrunken. Er kommt von der Straße ab, überschlägt sich und ist fortan Tetraplegiker. Ein junges Mädchen springt in ein Schwimmbecken und bricht sich dabei das Genick. Ein Arbeiter fällt von einem Gerüst und ist querschnittsgelähmt. Ein Erdbeben zerstört Häuser und durch das herabfallende Mauerwerk erleidet ein Mensch eine Rückenverletzung. Eine Frau mittleren Alters ist gelähmt infolge eines Tumors. All dies sind Beispiele dafür, wie ein Mensch in der Blüte seines Lebens plötzlich aus heiterem Himmel eine Behinderung erleidet. Keiner von uns ist „immun“ gegen dieses Risiko. Des Weiteren geht eine Querschnittlähmung häu g einher mit einem frühzeitigen Tod oder bestenfalls lediglich sozialer Ausgrenzung. Die Versorgung von traumatisierten Menschen ist o unzureichend. Viele Betro ene haben keinen Zugang zu qualitativ hochwertigen Rehabilitationsmaßnahmen und technischen Hilfsmitteln. Es mangelt an dauerha er medizinischer Versorgung, so dass Menschen mit einer Querschnittlähmung häu g nur nach wenigen Jahren an den Folgen von Harnweginfektionen oder Dekubitus sterben. Selbst wenn die Betro enen in der glücklichen Lage sind, die nötige Gesundheitsversorgung und Rehabilitation zu erhalten, wird ihnen vermutlich der Zugang zu Ausbildung und Beschä igung verwehrt, so dass es ihnen nicht möglich ist, ihre Unabhängigkeit zurückzuerlangen und einen Beitrag zu Familie und Gesellscha zu leisten. All diese verheerenden Folgen sind unnötig. Die Botscha dieses Berichtes ist, dass Querschnittlähmungen vermeidbar sind; dass man sie überleben kann; und dass Querschnittlähmungen nicht zwangsläu g mit einer verminderten Lebensqualität einhergehen müssen – man kann nach wie vor seinen Beitrag zur Gesellscha in vollem Umfang leisten. Der Bericht enthält die besten verfügbaren wissenscha lichen Erkenntnisse in Bezug auf Strategien zur Verringerung der Inzidenz von Querschnittlähmungen – insbesondere von Querschnittlähmungen vii
Querschnittlähmung – Internationale Perspektiven
mit traumatischer Ursache. In dem Bericht geht es auch darum, wie das Gesundheitssystem Betro enen e ektiv helfen kann. Zuletzt befasst sich der Bericht ebenfalls damit, wie persönliche Anpassung und Beziehungen unterstützt werden können, wie Barrieren in der Umgebung beseitigt werden können und wie Menschen mit Querschnittlähmung Zugang zu Schulen, Universitäten und Beschäftigung erhalten. Bei einer Querschnittlähmung lässt sich aus einer Bedrohung auch eine Chance machen – dies ist in zweierlei Hinsicht möglich: Zum einen stellt Querschnittlähmung eine Herausforderung für nahezu alle Bereiche des Gesundheitssystems dar. Wenn es uns gelingt, dass das Gesundheitssystem dieser Herausforderung gewachsen ist, dann kann man dadurch auch anderen Krankheiten und Verletzungen besser begegnen. Zum anderen wird eine Welt, die insbesondere Menschen mit Querschnittlähmungen o en aufnimmt, auch o ener sein gegenüber Menschen mit Behinderungen im Allgemeinen. Eine verbesserte Zugänglichkeit und eine größere Verfügbarkeit von technischen Hilfsmitteln werden Millionen von behinderten und älteren Menschen in der Welt helfen. Letztendlich impliziert das Wort „Chance“ selbst natürlich auch das bessere Leben und den produktiven Beitrag, die sich viele Menschen mit Querschnittlähmung zu Recht zum Ziel gesetzt haben. Mit Unterstützung seitens der Politik und dem Engagement von Organisationen können wir ihnen dabei helfen, dieses Ziel zu erreichen. Dieser Bericht kann Leben verändern und Türen ö nen – so wie dies bereits der Weltbericht Behinderung getan hat ist dies auch mit Querschnittlähmung – Internationale Perspektiven möglich. Ich fordere die Entscheidungsträger dieser Welt dazu auf, den Ergebnissen dieses Berichts Beachtung zu schenken. Dr. Margaret Chan Generaldirektorin
viii
Danksagung*
Die Weltgesundheitsorganisation (WHO) und die International Spinal Cord Society (ISCoS) danken den insgesamt mehr als 200 Beitragenden (Redakteure, Regionalberater und Gutachter) aus über 30 Ländern der ganzen Welt, die an diesem Bericht mitgewirkt haben. Dank gebührt auch den Beratern, den Mitarbeitern von WHO und ISCoS sowie der Schweizer Paraplegiker-Forschung (SPF) für ihre Unterstützung und Beratung. Ohne ihr Engagement und ihr Fachwissen wäre dieser Bericht nicht möglich gewesen. Der Bericht hat auch vom Einsatz vieler anderer Menschen pro tiert. Dabei sind insbesondere hervorzuheben David Bramley und Philip Jenkins, die den Text des Hauptberichts redigiert haben, und Angela Burton, die den Alternativtext für Bildschirm-Leseprogramme zur Darstellung der Abbildungen und Graphiken für Menschen mit Sehbehinderungen entwickelt hat. Dank gebührt ebenfalls den folgenden Personen: Natalie Jessup, Sue Lukersmith and Margie Peden für ihre technische Unterstützung bei der Entwicklung des Berichts; für Datenanalyse und -interpretation Martin Brinkhof, Somnath Chatterji und Colin Mathers und für die Übersetzung nicht-englischer Studien Nicole Andres, Carolina Ballert, Pavel Ptyushkin und Hua Cong Wen. Der Bericht pro tierte auch von der Arbeit von James Rainbird für das Korrekturlesen, Christine Boylan für die Indexerstellung und Susan Hobbs und Adele Jackson für das Graphikdesign sowie Rachel McLeod-Mackenzie für ihre administrative Unterstützung und die Produktion des Berichts in zugänglichen Formaten, mit der Unterstützung von Melanie Lauckner. Die WHO und ISCoS danken insbesondere der SPF für ihre Unterstützung bei der Koordinierung und Entwicklung des Berichts sowie der Schweizer Paraplegiker-Vereinigung (SPV), SPF und der Schweizer Paraplegiker-Sti ung (SPS) für ihre nanzielle Unterstützung bei der Entwicklung, Übersetzung und Veröffentlichung des Berichts.
Cover-Design von Brian Kellett
Brian Kellet erlitt 2003 eine komplette Querschnittslähmung T4 nach einem Mountain Bike Unfall. Die Kunst ermöglichte es ihm, seine Behinderung zu akzeptieren und sich den neuen Umständen anzupassen. Als Lehrbeau ragter an seinem * (der englischen Originalausgabe)
ix
Querschnittlähmung – Internationale Perspektiven
College und in seiner Tätigkeit als Künstler, ist er dankbar dafür, dass seine Behinderung ihm eine einzigartige Perspektive gibt, die er mit anderen teilen kann. Er arbeitet als freiberu icher Fotograf und Designer und hat sein akademisches Studium als Doktorand (PhD) der Kunsterziehung an der Universität von Ohio wieder aufgenommen. Sein Ziel ist es, eine gemeinnützige Organisation zu gründen, die mit Kriegsversehrten arbeitet und Fotogra eren als erapieform anbietet.
x
Liste der Beitragenden
Redaktionsausschuss Jerome Bickenbach, Cathy Bodine, Douglas Brown, Anthony Burns, Robert Campbell, Diana Cardenas, Susan Charlifue, Yuying Chen, David Gray, Leonard Li, Alana O cer, Marcel Post, Tom Shakespeare, Anne Sinnott, Per von Groote, Xianghu Xiong.
Leitende Redakteure Jerome Bickenbach, Alana O cer, Tom Shakespeare, Per von Groote.
Technische Redakteure David Bramley, Philip Jenkins.
Beirat Frank Abel, Michael Baumberger, Pietro Barbieri, Fin Biering-Sørensen, Anne Carswell, Fred Cowell, Joel DeLisa, Wagih El Masri(y), Stella Engel, Edelle FieldFote, Jan Geertzen, Anne Hawker, Joan Headley, Jane Horsewell, Daniel Joggi, Apichana Kovindha, Etienne Krug, Gerold Stucki, Maluta Tshivhase, Isabelle Urseau, Jean-Jacques Wyndaele.
Beitragende zu den einzelnen Kapiteln Kapitel 1: Querschnittlähmung verstehen Beitragende: Jerome Bickenbach, Fin Biering-Sørensen, Joanna Knott, Tom Shakespeare, Gerold Stucki, George arion, Joy Wee. Kasten: Jerome Bickenbach (1.1).
Kapitel 2: Querschnittlähmung – global betrachtet
Beitragende: Jerome Bickenbach, Inga Boldt, Martin Brinkhof, Jonviea Chamberlain, Raymond Cripps, Michael Fitzharris, Bonne Lee, Ruth Marshall, Sonja Meier, Michal Neukamp, Peter New, Richard Nicol, Alana O cer, Brittany Perez, Per von Groote, Peter Wing. Kästen: Martin Brinkhof, Jonviea Chamberlain, Sonja Meier (2.1), Jerome Bickenbach (2.2), Per von Groote (2.3).
xi
Querschnittlähmung – Internationale Perspektiven
Kapitel 3: Prävention von Querschnittlähmung
Beitragende: Douglas Brown, Robert Campbell, George Coetzee, Michael Fitzharris, Fazlul Hoque, Shinsuke Katoh, Olive Kobusingye, Jianan Li, Ruth Marshall, Chris Mikton, Peter New, Alana O cer, Avi Ohry, Ari Seirlis, Per von Groote, Dajue Wang, Eric Weerts, Joy Wee, Gabi Zeilig. Kästen: Michael Fitzharris (3.1), Fazlul Hoque (3.2), Martin Brinkhof, Jonviea Chamberlain, Sonja Meier (3.3), George Coetzee, Alana O cer (3.4), Richard Nicol (3.5), Balraj Singhal, Rick Acland, David Walton, Wayne Viljoen, Clint Readhead (3.6).
Kapitel 4: Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
Beitragende: Cathy Bodine, Brian Burne, Anthony Burns, Diana Cardenas, Catharine Craven, Lisa Harvey, Graham Inglis, Mark Jensen, Natalie Jessup, Paul Kennedy, Andrei Krassioukov, Richard Levi, Jianjun Li, Sue Lukersmith, Ruth Marshall, James Middleton, Carrie Morris, Peter New, Alana O cer, Govert Snoek, Xianghu Xiong. Kasten: Natalie Jessup (4.1).
Kapitel 5: Stärkung von Gesundheitssystemen
Beitragende: Cathy Bodine, Yuying Chen, Harvinder Chhabra, William Donovan, Julia D’Andrea Greve, Natalie Jessup, Carlotte Kiekens, Suzy Kim, Jiri Kriz, Jianan Li, Leonard Li, Sue Lukersmith, Ruth Marshall, Alana O cer, Sheila Purves, Haiyan Qu, Lawrence Vogel, Per von Groote, William Waring, Jacqueline Webel, Eric Weerts. Kästen: James Gosney, Xia Zhang (5.1), Ruth Marshall (5.2), Anca Beudean (5.3), James Guest (5.4).
Kapitel 6: Einstellungen, Beziehungen und Anpassung
Beitragende: Caroline Anderson, Susan Charlifue, Jessica Dashner, Stanley Ducharme, Martin Forchheimer, David Gray, Richard Holmes, Jane Horsewell, Margareta Kreuter, Mary-Jane Mulcahey, Richard Nicol, Joanne Nunnerley, Marcel Post, Shivjeet Raghaw, Tom Shakespeare, Cyril Siriwardane, Tomasz Tasiemski, Lawrence Vogel. Kästen: Carwyn Hill (6.1), Jane Horsewell, Per von Groote (6.2), Cyril Siriwardane (6.3).
Kapitel 7: Zugängliche Umwelten für Querschnittgelähmte
Beitragende: Jerome Bickenbach, Meghan Gottlieb, David Gray, Sue Lukersmith, Jan Reinhardt, Tom Sheakespeare, Anne Sinnott, Susan Stark, Per von Groote. Kästen: Samantha Whybrow (7.1), Jerome Bickenbach (7.2).
Kapitel 8: Bildung und Beschäftigung
Beitragende: Caroline Anderson, Elena Ballantyne, Jerome Bickenbach, Kathryn Boschen, Normand Boucher, David Gray, Erin Kelly, Sara Klaas, Lindsey Miller, Kerri Morgan, Carrie Morris, Marcel Post, Tom Shakespeare, Lawrence Vogel, Per von Groote, Kathy Zebracki. Kästen: Jerome Bickenbach (8.1), Marcel Post (8.2), Jerome Bickenbach (8.3).
xii
Liste der Beitragenden
Kapitel 9: Der Weg nach vorne: Empfehlungen Technische Anhänge
Beitragende: Alana O cer, Tom Shakespeare, Per von Groote. Beitragende: Inga Boldt, Martin Brinkhof, Jonviea Chamberlain, Sonja Meier, Michal Neukamp, Per von Groote.
Beitragende für die Erfahrungsberichte
Der Bericht umfasst Erfahrungsberichte, in denen Menschen mit Behinderungen in persönlicher Weise ihre Erfahrungen schildern. Wir danken Mónica Agotegaray, David Gray, Julia D’Andrea Greve, Maher Saad Al Jadid, Norah Keitany, Apichana Kovindha, Sue Lukersmith, Ruth Marshall, Alexandra Rauch, Carolina Schiappacasse, Anne Sinnott, Kelly Tikao, Xia Zhang für die Unterstützung beim Finden der Beitragenden für die Erfahrungsberichte. Viele Menschen haben uns einen Erfahrungsbericht zugesandt, aber nicht alle konnten in den Bericht aufgenommen werden. Aus Gründen der Vertraulichkeit wurden hier immer nur der Vorname und das Herkunftsland der Beitragenden genannt.
Gutachter Fin Biering-Sørensen, Johan Borg, Martin Brinkhof, Douglas Brown, Thomas Bryce, Paola Bucciarelli, Marcel Dijkers, Pat Dorsett, Inge Eriks-Hoogland, Reuben Escorpizo, Szilvia Geyh, Ellen Hagen, Claes Hultling, Rebecca Ivers, Desleigh de Jonge, Chapal Khasnabis, Ingeborg Lidal, Anna Lindström, Rod McClure, Stephen Muldoon, Rachel Müller, Claudio Peter, Ranjeet Singh, Alexandra Rauch, Jan Reinhardt, Marcalee Sipski Alexander, John Stone, Thomas Stripling, Denise Tate, Armando Vasquez, Eric Weerts, Gale Whiteneck.
Weitere Beitragende Regionalberater Sergio Aito, Fin Biering-Sørensen, Susan Charlifue, Yuying Chen, Harvinder Chhabra, Wagih ElMasri(y), Stella Engel, Michael Fitzharris, Harish Goyal, Sonja de Groot, Lisa Harvey, Nazirah Hasnan, Jane Horsewell, Jianan Li, Sue Lukersmith, Ketna Mehta, Stephen Muldoon, Joanne Nunnerley, Marcel Post, Shivjeet Raghaw, Cyril Siriwardane, Tomasz Tasiemski, Esha apa, Sara Varughese, Dajue Wang, Eric Weerts, Lucas van der Woude. Keiner der Experten, die an der Entwicklung dieses Berichts mitgewirkt haben, hat einen Interessenkon ikt angegeben.
xiii
Kapitel 1 Querschnittlähmung verstehen
„Vor der Querschnittlähmung war ich ein sehr unabhängiger Mensch. Ich habe oft und gerne etwas mit meinen zahlreichen Freunden unternommen, habe hart gearbeitet, bin viel gereist, habe Jura studiert, hatte Verabredungen… Ich habe gelebt, wie jede andere junge Frau auch – mit viel Lebenslust. Nach der Querschnittlähmung war alles anders – viele meiner Träume lagen erst einmal auf Eis: Allein leben, das Studium abschließen, eine Familie gründen.“ (Claudia, Brasilien) „Mein Vater fuhr die Fahrradrikscha, meine Mutter saß auf der Rückbank und hatte mich im Arm – da nahm uns plötzlich ein Auto mit. Beide waren tot. Ich habe überlebt, bin aber seit meinem 2. Lebensjahr querschnittgelähmt. Mein Großvater hat sich um mich gekümmert, wir lebten in einem Slum in Bangkok. Später besuchte ich eine Schule für behinderte Kinder. Heute bin ich 11 und habe die Schule abgebrochen. Mein Gehirn funktioniert nicht gut. Ich habe ein schlechtes Gedächtnis, aber mit dem Rollstuhl komme ich problemlos klar. Glücklicherweise habe ich Herrn B. kennengelernt, einen Geschäftsmann mit Tetraplegie. Er und seine Frau haben mich bei sich aufgenommen. Nun lebe ich bei ihnen. Sie haben mir einen Sportrollstuhl gekauft und wollen, dass ich einmal als Rollstuhlsportler für unser Land antrete – ich glaube, das schaffe ich.“ (Anonym, Thailand) „Als ich aus der Reha(bilitation) kam, wurde ich am Flughafen in Empfang genommen. Eine neue Phase meines Lebens begann – die im Rollstuhl. Ich dachte, ich könne nie wieder so leben wie zuvor. Ich hab‘ mich geschämt und wollte meine Freunde nicht sehen. Ich war anders; ich hatte mich verändert. Ich konnte nicht mehr Fußballspielen, rennen, zelten oder mit dem Rad zum Fluss runter. Ich wollte nur noch drin bleiben und mich verstecken. Meine Ergotherapeutin vor Ort hat 6 Monate Überzeugungsarbeit leisten müssen, bevor ich das Haus wieder verlassen habe. Sie hatte bereits vor meiner Rückkehr Vorkehrungen für mich treffen lassen: Die Schule hat Rampen für mich gebaut und sichergestellt, dass alle Toiletten für mich zugänglich sind. Langsam gewann ich wieder mehr Selbstvertrauen. Vor meinem Unfall habe ich am liebsten Basketball gespielt. In der Reha(bilitation) habe ich gelernt Rollstuhl-Basketball zu spielen. Ich hab‘ ein paar Freunden einige Tricks im Rollstuhl gezeigt. Die Lehrer haben sich dafür eingesetzt, mich in der Schule und in meiner Gemeinschaft wieder mehr zu integrieren – durch Ausflüge in unserer Gemeinde, bei denen wir Buschpflanzen bestimmen mussten und auch durch einen Schulausflug nach Cairns. Die Unterstützung der Lehrer, Freunde und Familie war sehr ermutigend.“ (Alfred, Australien)
1
Querschnittlähmung verstehen Querschnittlähmung (QSL) ist ein medizinisch komplexer Zustand, der das gesamte Leben verändert. In der Vergangenheit war QSL verbunden mit einer sehr hohen Sterblichkeitsrate. In Ländern mit einem hohen Nationaleinkommen bedeutet QSL heute nicht mehr das Ende eines lebenswerten und produktiven Lebens, sondern sollte vielmehr als persönliche und gesellscha liche Herausforderung angesehen werden, die man erfolgreich überwinden kann. Diese Veränderung ist zurückzuführen auf eine bessere medizinische Versorgung – diese ermöglicht es den Betro enen, die Verletzung zu überleben und auch nach der Verletzung zu leben und erfolgreich zu sein. Menschen, die heute eine QSL erleiden werden in der Regel besser notfallmedizinisch versorgt, erhalten eine bessere Gesundheitsversorgung und Rehabilitation, ihnen stehen Technologien wie Beatmungsgeräte und angemessene Rollstühle zur Verfügung, die sozialen Dienstleistungen haben an Umfang zugenommen und auch die Umwelt ist zugänglicher geworden. So können Leben gerettet und die Funktionsfähigkeit maximiert werden. Menschen mit QSL leben daher heute nicht nur länger, sondern führen auch ein erfüllteres und produktiveres Leben als Generationen querschnittgelähmter Menschen vor ihnen. In Ländern mit geringem Nationaleinkommen sieht die Lage ganz anders aus. Traumatische Querschnittlähmungen enden o tödlich. Die meisten querschnittgelähmten Menschen in Ländern wie etwa Sierra Leone sterben nur wenige Jahre nach Eintreten der Verletzung (1). In Ländern mit geringem Nationaleinkommen und in vielen Ländern mit mittlerem Nationaleinkommen sind qualitativ-hochwertige technische Hilfsmittel nur eingeschränkt verfügbar. Die medizinische Versorgung und das Rehabilitationsangebot sind minimal und auch die Möglichkeiten der Teilhabe in allen Bereich des persönlichen und gesellscha lichen Lebens sind begrenzt (2). Die heutige Situation in vielen Entwicklungsländern ist vergleichbar mit der Situation in Europa und Nordamerika in den 1940er Jahren (3). Armut macht das Leben für Menschen mit einer QSL noch schwerer (4). Die Tatsache, dass in Ländern mit hohem Nationaleinkommen in so kurzer Zeit derart rasante Fortschritte im Hinblick auf Überleben und Teilhabe erzielt werden konnten, gibt Anlass zu Optimismus in Bezug auf andere Teile der Welt. Mit den richtigen politischen Konzepten sollten Menschen überall in der Welt mit einer QSL leben, Erfolg haben und einen Beitrag leisten können. 3
Querschnittlähmung – Internationale Perspektiven
Aber keiner lebt in einem Vakuum – um verstehen zu können, wie Menschen mit einer QSL leben, müssen wir wissen wie ihr Alltag aussieht hinsichtlich ihrer physischen und sozialen Umwelt sowie in Bezug auf die Einstellungen, die in der Umwelt vorherrschen. Die Lebensqualität querschnittgelähmter Menschen hängt in hohem Maße davon ab, ob die Umwelt, von der sie umgeben sind, ihnen das Leben erleichtert (angemessene Ressourcen und Dienstleistungen sind verfügbar, sie werden von anderen Menschen unterstützt und sind in eine Gemeinscha integriert), oder ob sie ein Hindernis darstellt. Letzteres ist beispielsweise der Fall, wenn Betro ene mit diskriminierenden Einstellungen oder anderen Barrieren konfrontiert werden. Dazu zählt auch ein Mangel an unterstützenden und lebenserleichternden Dienstleistungen und Ressourcen. Welchen Ein uss eine QSL auf eine Person und auf die Gesellscha insgesamt hat, hängt daher von einer Vielzahl von Faktoren ab, darunter auch: ■ das Alter bei Eintreten der Verletzung (ob früh oder spät im produktiven Leben eines Menschen); ■ das Ausmaß der Verletzung; ■ die Verfügbarkeit und zeitliche Planung der Ressourcen und Leistungen; ■ die Umgebung in der die betroffene Person lebt – in physikalischer, sozialer, wirtschaftlicher und einstellungsbezogener Hinsicht. Politische Konzepte, die eine umgehende und e ektive medizinische Versorgung sowie eine fortwährende Rehabilitation mit dem Ziel einer vollständigen Wiedereingliederung in die Gemeinscha gewährleisten, sind höchst kostene zient und auch von Vorteil für die Gesellscha . Die Kosten für die umgehende Notfallversorgung und medizinische Versorgung werden durch die Tatsache ausgeglichen, dass dadurch direkt Leben gerettet werden. Da unverhältnismäßig viele junge Menschen, die noch zahlreiche produktive Jahre vor sich 4
haben, eine QSL erleiden, können mangelnde Ressourcen für ihre Rehabilitation zu erheblichen Verschwendungen im sozialen Bereich führen, die durch kostene ziente Maßnahmen vermieden werden können. Ausgaben für Maßnahmen im Bereich der medizinischen Versorgung und Rehabilitation von Menschen mit QSL sind eine gute Investition. Viel wichtiger noch: Dadurch werden Leben gerettet, die Lebensqualität wird verbessert und die Produktivität gewahrt – unsere gesellscha liche und humanitäre P icht. Die Empfehlungen dieses Berichts heben die Veränderungen im Bereich der Maßnahmen und in der Praxis hervor, die nachweislich den Gesundheitszustand und die Lebensqualität von Menschen mit QSL maßgeblich verbessern können. Die Schritte hin zu einem besseren Leben für die Betro enen müssen einhergehen mit Maßnahmen zur Vermeidung von Querschnittlähmungen. Dieser Bericht zeigt, dass viele der häu gsten Ursachen traumatischer QSL - wie etwa Verkehrsunfälle, Stürze, Freizeit- und Sportverletzungen und Gewalt – nachvollzogen, vorhergesehen und größtenteils vermieden werden können.
Ziele und Umfang dieses Berichts Querschnittlähmung – Internationale Perspektiven hat die folgenden Ziele: ■ Zusammenstellen und Zusammenfassen von Informationen über QSL, insbesondere zu Epidemiologie, Dienstleistungen, Interventionen und politischen Konzepten, die relevant sind, ebenso wie der gelebten Erfahrung von Menschen mit QSL in allen Lebensphasen und allen Teilen der Welt; ■ Empfehlungen abgeben für evidenzbasierte Maßnahmen, die konsistent sind mit den Zielen für Eingliederung und Partizipation, wie in der UN-Konvention über die Rechte von Menschen mit Behinderungen (BRK) beschrieben (5).
Kapitel 1
Querschnittlähmung verstehen
Dieser Bericht dokumentiert das Ausmaß von QSL sowie die Entwicklungen in diesem Bereich. Ebenso sollen Präventionsstrategien untersucht und die Situation von Menschen mit QSL überall in der Welt analysiert werden. Es werden auch Lösungsvorschläge unter Berücksichtigung einer Reihe von wirtscha lichen Kontexten dargelegt, die die gelebte Erfahrung von querschnittgelähmten Menschen verbessern. Zu diesen Lösungen zählen eine inklusive Gesundheitsversorgung und Rehabilitation, ein verbesserter Zugang zu Bildung und Beschä igung und mehr Unterstützung für das Leben in der Gemeinscha und in der Familie. Das einleitende Kapitel gibt eine allgemeine Einführung zum ema QSL, einschließlich einer kurzen Darstellung der medizinischen Dimension von QSL für Laien sowie einen Überblick über die historische Entwicklung. Ebenso wird hier diskutiert, inwieweit QSL sowie die Systeme und Dienstleistungen, die nötig sind, um das Leben von Menschen mit QSL zu verbessern, zur Beurteilung beitragen können, ob die gesellscha lichen Maßnahmen den Bedürfnissen von Menschen mit gesundheitlichen Problemen und damit verbundenen Behinderungen in angemessener Weise gerecht werden.
Querschnittlähmung – was ist das? Die medizinische Sicht Ein Grundverständnis von Anatomie und Physiologie ist wichtig, wenn auch die Erfahrungen querschnittgelähmter Menschen sehr unterschiedlich sind in Abhängigkeit von bestimmten Umweltfaktoren. Das Rückenmark be ndet sich in der Wirbelsäule (vgl. Abbildung 1.1); Es reicht vom Gehirn bis hinunter in den Bereich des ersten bis zweiten Lendenwirbels L1–L2 und endet im Conus medullaris. Ab dem Ende des Rückenmarks verläu im Spinalkanal die
Cauda equina (auch genannt „Pferdeschwanz”). Das Rückenmark selbst lässt sich in mehrere neurologische Segmente untergliedern, gemäß den Nervenwurzeln, die an der Wirbelsäule zwischen den einzelnen Wirbeln austreten. Es gibt 31 Paare von Nervenwurzeln: 8 zervikale, 12 thorakale, 5 lumbale, 5 sakrale Nervenwurzeln und 1 im Bereich des Steißbeins. Durch die unterschiedliche Länge von Rückenmark und Wirbelsäule entspricht das neurologische Niveau nicht zwangsläu g den Wirbelsegmenten. Während es Diskussionen darum gibt, welche Verletzungen als “Querschnittlähmung” eingestu werden sollen, bezieht sich die Bezeichnung im Kontext dieses Berichts auf sämtliche Verletzungen des Rückenmarks, des Conus medullaris und der Cauda equina. Man unterscheidet zwischen traumatischen und nicht-traumatischen QSL. Traumatische QSL können verschiedene Ursachen haben, darunter auch Stürze, Verletzungen durch Verkehrsunfälle, Arbeitsunfälle, Sportverletzungen und Gewalt. Nicht-traumatische QSL sind für gewöhnlich die Folge einer zugrunde liegenden krankha en Veränderung: Beispiele hierfür sind Infektionskrankheiten, ein Tumor, musculoskelettale Erkrankungen, wie etwa Osteoarthritis, und angeborene Krankheiten, wie Spina bi da. Hierbei handelt es sich um einen Neuralrohrdefekt, der während der Entwicklung des Embryos entsteht. Die Symptome einer QSL hängen vom Ausmaß der Verletzung oder der nicht-traumatischen Ursache ab. Sie können vom Verlust der sensorischen und motorischen Kontrolle über die unteren Gliedmaßen, den Rumpfes und die oberen Gliedmaßen bis hin zum Verlust der natürlichen (unbewussten) Regulierung des Körpers reichen. Das kann Ein uss auf Atmung, Herzfrequenz, Blutdruck, Temperaturregulierung, Kontrolle von Blase und Darm und die Sexualfunktionen haben. Generell lässt sich sagen: Je höher das Lähmungsniveau, desto umfangreicher die Schädigung. Eine QSL auf Höhe der Halswirbelsäule hat für gewöhnlich den Verlust der sensorischen 5
Kapitel 1
Querschnittlähmung verstehen
sensorischen und/oder motorischen Funktionen im Rumpf und in den Beinen – dies wird als Paraplegie bezeichnet. Eine QSL auf Höhe der Lendenwirbelsäule zieht für gewöhnlich den Verlust der sensorischen und motorischen Funktionen in Hü e und Beinen nach sich. Alle Formen der QSL können zudem chronische Schmerzen verursachen. Die Schwere und das Ausmaß des Verlustes der sensorischen, motorischen und autonomen Funktionen durch eine QSL hängt nicht nur von der Läsionshöhe ab, sondern auch davon, ob die Querschnittlähmung „komplett“ oder „inkomplett“ ist. Gemäß der American Spinal Injury Association (ASIA) Impairment Scale (AIS), die sich nach den International Standards for Neurological Classi cation of SCI richtet, liegt eine komplette QSL vor, wenn keine motorischen und sensorischen Funktionen im Bereich S4–S5 mehr vorhanden sind. Bei einer inkompletten QSL sind noch gewisse motorische und sensorische Funktionen unterhalb der Läsionshöhe vorhanden, auch im Bereich der untersten Kreuzbeinsegmente S4–S5. Dennoch ist eine solche Verletzung nicht weniger gravierend und kann ebenso erhebliche Schädigungen zur Folge haben.
Die historische Sicht von Querschnittlähmung Zum ersten Mal wurde QSL erfolgreich behandelt in den 1930er Jahren am Boston City Hospital. Federführend war hier der amerikanische Neurochirurg Dr. Donald Munro (6). Sein Ansatz wurde von Sir Ludwig Guttmann aufgegri en, der 1944 eine Station für QSL am Stoke Mandeville Hospital in Großbritannien einrichtete (1952 entstand daraus das Nationale Zentrum für QSL). Die bis dahin im Bereich QSL vorherrschende Sterberate von 80% ging zurück, da von nun an die Patienten alle zwei Stunden gedreht wurden, ihre Haut gep egt, und ein
besseres Blasenmanagement eingeführt wurde. Die Funktionsfähigkeit der Betro enen konnte durch Physio- und Ergotherapie verbessert werden und durch die ganzheitlichere Behandlung konnten auch die sozioökonomischen Bedürfnisse der Patienten erfüllt werden (7, 8). Guttmann legte großen Wert auf sportliche Betätigung als erapieform – er rief die Stoke Mandeville Spiele ins Leben, aus denen 1960 die Paralympischen Spiele hervorgingen (9). Diese frühen Einrichtungen dienten als Vorbild für die Behandlung von QSL im Vereinigten Königreich, den USA und anderen Ländern. Die veränderte Erfahrung von QSL spiegelt auch die breitere Entwicklung des Verständnisses von Behinderung im Allgemeinen wider. Der Umgang der Gesellscha mit Behinderung hat sich in den vergangenen Jahrzehnten grundlegend verändert. Dies ist in erster Linie auf den unermüdlichen Einsatz von Menschen mit Behinderung zurückzuführen. Behinderte Menschen haben für vollständige Inklusion und Teilhabe in allen Bereichen der Gesellscha gekämp . Auch begri ich gesehen hat sich der Fokus verschoben: Behinderung wird nicht mehr als individuelles De zit angesehen, sondern vielmehr als Ergebnis der komplexen Interaktion zwischen individuellen gesundheitlichen Merkmalen, Funktionsfähigkeit und Aspekten der physischen, sozialen oder einstellungsbedingten Umwelt der betro enen Person. Neben der konzeptuellen Veränderung wird Behinderung auch immer häu ger unter dem Aspekt der Menschenrechte betrachtet. Aus dieser gut dokumentierten Veränderung (10 –12) entwickelte sich schließlich die BRK (5). Menschen mit QSL haben in vielen Ländern eine führende Rolle in der Behindertenbewegung eingenommen. Pionierarbeit leistete hier das Center for Independent Living in Berkeley in Kalifornien (USA) in den späten 1960er und in den 1970er Jahren (10).
7
Querschnittlähmung – Internationale Perspektiven
Querschnittlähmung als Herausforderung für Gesundheitssysteme und die Gesellschaft Die Komplexität der gelebten Erfahrung mit QSL sowie die Mannigfaltigkeit dieser Erfahrungen in aller Welt führen dazu, dass QSL weitreichende Folgen für die Überwachung der Gesundheitsversorgung hat, obwohl es sich hierbei um ein Gesundheitsproblem mit vergleichsweise geringer Prävalenz handelt. Für gewöhnlich wird ein Mensch mit QSL alle klinischen Bereiche kennenlernen, die in seinem Land zur Verfügung stehen: Notfallversorgung, Intensivstation, Chirurgie, stabilisierende medizinische Versorgung und vor allem auch die Rehabilitation. Letztere umfasst auch die Rückkehr in das persönliche Umfeld, die beru iche Rehabilitation und eine fortwährende Primärversorgung. Auf diese Weise gibt QSL Aufschluss darüber, ob die Dienstleistungen, Systeme und politischen Konzepte eines Landes angemessen sind. Kliniker, Gesundheitsexperten, Wissenscha ler und Entscheidungsträger können so die Stärken und Schwächen ihres Gesundheitssystems besser beurteilen. QSL ist ein guter Indikator, um festzustellen, ob das gesamte Gesundheitssystem funktioniert oder nicht. Abgesehen von der gesundheitlichen Versorgung benötigen Menschen mit QSL auch Dienstleistungen, Ressourcen und Zugang zu gesellscha lichen, bildungsbezogenen und wirtscha lichen Bereichen, um ein erfülltes Leben zu führen. Der Kontakt zur Gesellscha , zu Selbsthilfe- und Patientengruppen oder anderen unterstützenden Institutionen und Organisationen, die für Behinderte tätig sind, ist von essenzieller Bedeutung, um Informationen, Beratung und Unterstützung zu erhalten und sich für politische Veränderungen einzusetzen. Wenn Politik und Gesellscha Menschen mit QSL im Stich lassen, werden sie dies auch bei Menschen mit anderen Gesundheitsproblemen 8
tun. Informationen bezüglich der Erfahrungen von Menschen mit QSL sowie Forschung in diesem Bereich sind meist auch von Bedeutung für eine solide staatliche Gesundheitspolitik und breitgefächerte Maßnahmen zur Beseitigung von Barrieren in der Versorgung. Im Gegenzug gilt auch: Kliniker und Wissenscha ler im Bereich QSL können ebenso von Forschungsarbeit im Bereich von häu ger au retenden Krankheiten pro tieren, die mit ähnlichen Schädigungen oder Herausforderungen im Alltag einhergehen, die auch Menschen mit QSL erfahren. Angesichts der Tatsache, dass sich Forschungsbestrebungen in Bereichen wie Zugang zu ö entlichen Verkehrsmitteln oder Dienstleistungen zur Wiederaufnahme der Beschä igung eher auf Krankheiten und Behinderungen mit höherer Prävalenz konzentrieren, beziehen sich die besten Ergebnisse möglicherweise nicht direkt auf QSL, sondern auf Menschen mit „Mobilitätsproblemen“ oder „Rollstuhlfahrer“. Dieser Bericht nutzt sämtliche qualitativ-hochwertigen Forschungsergebnisse, unabhängig davon, ob sie sich unmittelbar auf QSL konzentrieren oder ob der Fokus allgemeiner auf Behinderungen liegt.
Instrumente für ein besseres Verständnis der Erfahrungen von Querschnittgelähmten Es gibt zwei Instrumente, die unerlässlich sind, um zu verstehen was es heißt mit einer QSL zu leben: Zum einen die BRK, die als moralischer Kompass dient, indem sie Behinderung unter dem Gesichtspunkt der Menschenrechte und der Entwicklung betrachtet, und zum anderen die Internationale Klassi kation der Funktionsfähigkeit, Behinderung und Gesundheit (ICF) der WHO. Letztere bietet ein Modell zur begri lichen Klärung von Funktionsfähigkeit und Behinderung und dient als epidemiologische Klassi kation zur Datensammlung und für die klinische Praxis (vgl. Kasten 1.1).
Querschnittlähmung – Internationale Perspektiven
Gruppen. Die Konvention betont nicht nur das umfassende Ziel „…den vollen und gleichberechtigten Genuss aller Menschenrechte und Grundfreiheiten durch alle Menschen mit Behinderungen zu fördern, zu schützen und zu gewährleisten und die Achtung der ihnen innewohnenden Würde zu fördern…“, sondern legt auch konkrete Menschenrechte im Bereich Gesundheit, Bildung, Beschä igung und Familienleben fest. In späteren Kapiteln wird gezeigt werden, dass die BRK ganz deutlich die Bereiche festlegt, in denen laut Konvention eine Reform der Menschenrechte notwendig ist. Die zentralen emen dieses Berichts – der Ein uss von Stigmen und Einstellungen, der Grad der Zugänglichkeit der Umwelt, die Verfügbarkeit von Gesundheits- und Sozialdienstleistungen und in welchem Umfang Menschen mit QSL teilhaben können an Bildung, Beschä igung und Familien- und Gemeinscha sleben – sind auch Hauptgegenstand der Artikel der BRK. Darüber hinaus – und das gilt ausschließlich für dieses UN-Menschenrechtsabkommen- legt die BRK fest, dass die Vertragsstaaten statistische Daten sammeln (Artikel 31) und unabhängige Mechanismen zur Überwachung der Einhaltung der Menschenrechte einführen sollen (Artikel 33). So soll sichergestellt werden, dass der Fortschritt bei der Umsetzung der durch die BRK festgelegten Verp ichtungen auch mit wissenscha lichen Daten belegt werden kann. Die Länder sind so nicht nur verp ichtet, Vorgehensweisen und Gesetze im Hinblick auf Menschen mit Behinderung zu reformieren, sondern sie müssen auch nachweisen können, dass sie dies tun. Dieser Bericht soll den Ländern und ihren Behörden belastbare Zahlen liefern, für Verp ichtungen gegenüber Menschen mit QSL, die noch nicht eingehalten wurden. Ebenso sollen bewährte Verfahrensweisen zur Umsetzung dieser Verp ichtungen aufgezeigt werden.
Überblick Der Bericht ist angelehnt an die Verö entlichung der WHO/Weltbank Weltbericht Behinderung aus dem Jahr 2011 und untersucht ein Gesundheitsproblem detaillierter, als dies in der umfassenden Studie des Weltberichts Behinderung möglich war (15). Er richtet sich an Entscheidungsträger, Vertreter des Gesundheitswesens, Experten, Vertreter von NGOs und Organisationen, die für Behinderte tätig sind sowie all diejenigen, die sich damit befassen, das Leistungsangebot für Menschen mit QSL – vor allem in Ländern mit niedrigen und mittleren Nationaleinkommen – zu verbessern. Nach diesem einleitenden Kapitel werden in Kapitel 2 des Berichts die besten verfügbaren epidemiologischen Ergebnisse überprü bezüglich der Prävalenz und Inzidenz von QSL weltweit. Kapitel 3 untersucht die Hauptursachen von QSL und Präventionsprogramme, die diesen Ursachen sowie Risikofaktoren entgegenwirken. Anschließend liefert Kapitel 4 des Berichts einen umfassenden Überblick über die Bereiche medizinische Versorgung und Rehabilitation von Menschen mit QSL. Dies geht einher mit einer Diskussion um Gesundheitssysteme in Kapitel 5, die bewährte Verfahrensweisen in Interventions- und Behandlungsstrategien mit den Nachweisen über die Systeme verknüp , die diese zur Verfügung stellen sollen. Der Bericht konzentriert sich auf die gelebten Erfahrungen von Menschen mit QSL – angefangen bei Beziehungen und Einstellungen in Kapitel 6, über die allgemeinen Eigenscha en von barrierefreien Umwelten in Kapitel 7. Kapitel 8 befasst sich schließlich mit einer eingehenden Untersuchung von zwei der wichtigsten Bereiche der Teilhabe – Bildung und Beschä igung. Den Abschluss des Berichts bilden übergreifende Empfehlungen in Kapitel 9. Querschnittlähmung – Internationale Perspektiven gibt praktische Ratschläge zur Verbesserung des Lebens von Menschen mit QSL weltweit. Er fasst Daten zusammen, die
10
Kapitel 1
Querschnittlähmung verstehen
Bedürfnisse und unerfüllte Bedürfnisse belegen und hebt Verfahrensweisen hervor, die sich in mehreren Dienstleistungsbereichen und Ländern bewährt haben bei der Überwindung von Hindernissen und der Beseitigung von De ziten im Bereich der Dienste. Die Hauptaussagen des Berichts sind folgende: ■ QSL ist ein Gesundheitszustand mit relativ geringer Inzidenz, der aber verbunden ist mit sehr hohen Kosten. ■ Die Inzidenz traumatischer QSL kann bedeutend reduziert werden durch eine Reihe von Präventionsmaßnahmen. ■ Die Mortalitätsrate infolge einer QSL kann verringert werden durch angemessene und rechtzeitige Gesundheitsversorgung. Dadurch reduziert sich auch die
■ ■
Notwendigkeit eines erneuten Krankenhausaufenthalts aufgrund von sekundären Komplikationen. Abhängigkeit infolge einer QSL kann vermieden werden durch Rehabilitation und technische Hilfsmittel. Armut und soziale Ausgrenzung in Zusammenhang mit QSL können minimiert werden durch den Abbau von Barrieren und durch angemessene Unterstützung.
Obwohl eine QSL das Leben für immer verändert, muss sie nicht zugleich das Ende des Lebens bedeuten. Auch übermäßige Kosten für die Familien oder die Gesellscha sind durch angemessene gesundheitliche und gesellscha liche Maßnahmen vermeidbar.
Quellen 1. 2. Gosselin RA, Coppotelli C. A follow up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 Allotey P et al. The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegics in Australia and Cameroon. Social Science & Medicine, 2003, 57:949-958. doi: http://dx.doi.org/10.1016/S02779536(02)00463-X PMID:12850119 Liverman CT et al., editors. Spinal cord injury: progress, promise, and priorities. Washington, DC, National Academies Press, 2005. Weerts E, Wyndaele JJ. Accessibility to spinal cord injury care worldwide: the need for poverty reduction. Spinal Cord, 2011, 49:767. doi: http://dx.doi.org/10.1038/sc.2011.73 PMID:21720372 United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). Eltorai IM. History of spinal cord medicine. In: Lin VW et al., eds. Spinal cord medicine: principles and practice. New York, NY, Demos Medical Publishing, 2003. Silver JR. History of the treatment of spinal injuries. London, Springer, 2003. Bodner DR. A pioneer in optimism: the legacy of Donald Munro MD. The Journal of Spinal Cord Medicine, 2009, 32:355356. PMID:19777856 Guttmann L. Sport and recreation for the mentally and physically handicapped. Royal Society of Health Journal, 1973, 93:208-212. doi: http://dx.doi.org/10.1177/146642407309300413 PMID:4276814 Driedger D. The last civil rights movement. London, Hurst, 1989. Oliver M. The politics of disablement. Basingstoke, Macmillan and St Martin’s Press, 1990. Charlton J. Nothing about us without us: disability, oppression and empowerment. Berkeley, CA, University of California Press, 1998. Bickenbach JE et al. Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science & Medicine, 1999, 48:1173-1187. doi: http://dx.doi.org/10.1016/S0277-9536(98)00441-9 PMID:10220018 WHO. International classification of functioning, disability and health. Geneva, World Health Organization 2001, page 18. WHO/World Bank. World report on disability. Geneva, World Health Organization, 2011.
3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15.
11
Kapitel 2 Querschnittlähmung – global betrachtet
„Eines Tages bin ich aufgewacht und habe an die Decke gestarrt. Ich wollte meinen Kopf drehen, aber es ging nicht. Ich wollte meinen Arm heben, aber auch das ging nicht. Nichts hat sich bewegt. Ich habe viele Geräusche gehört, aber nichts gesehen. Eine Krankenschwester stand neben mir. Ich wollte etwas sagen, aber sie konnte mich nicht hören. Ich wollte schreien, aber bekam keinen Ton raus. Ich schloß meine Augen. Ich öffnete sie wieder, als jemand meinen Namen rief, schaute auf und sah meine Eltern. Ich dachte, ich hätte meine Augen nur für eine Sekunde geschlossen gehabt, aber ein ganzer Tag war vergangen. Meine Eltern sagten mir ich sei Tetraplegiker. Sie sagten ich sei in Brüssel im Krankenhaus und hätte einen Arbeitsunfall gehabt. Mein Genick war gebrochen, ich war komplett gelähmt und konnte nicht mal selber atmen. Ich hatte Durst und fragte nach Wasser. Ich konnte nicht aus der Tasse mit Strohhalm trinken, die man mir reichte, denn ich konnte nicht schlucken. Ich hatte an einem Haus gearbeitet. Ich bin von einer Leiter gefallen oder abgerutscht – ich weiß es nicht mehr. Ich bin sechs Meter in die Tiefe gefallen und auf Beton gelandet.“ (Gunther, Belgien) “Ich wurde bei einem Autounfall verletzt (C5–C6) als ich 19 war und sitze nun schon seit 30 Jahren im Rollstuhl. Ich lebe in der nördlichsten Stadt der Welt, in Hammerfest. Das Leben im Norden stellt mich oft vor Herausforderungen: Fünf Monate im Jahr liegt Schnee und es ist kalt, das macht es schwer mit dem Rollstuhl rauszugehen. Ich habe nach meiner Verletzung zu den Patienten gehört, die am meisten Unterstützung brauchen – das war in einer Zeit, in der sich die häuslichen Pflegedienste durch die Gemeinde gerade erst zu entwickeln begannen. Seitdem hatte ich das Glück, eingebunden zu werden und die Leistungen mitgestalten zu dürfen, gemäß meiner Bedürfnisse und meinem Wunsch, so normal wie möglich zu leben. (Kjell, Norwegen) “Ich wurde vor 4 Jahren beim Erdbeben von Sichuan verletzt, damals war ich 30. Jetzt bin ich täglich auf den Rollstuhl angewiesen.” (Chen, China) “Ich bin 51 Jahre alt und leide an einer kompletten Querschnittlähmung (Th–6), verursacht durch ein Blutgerinnsel. Ich war schockiert, als ich gelähmt war, denn ich hatte 1984 eine falsche Diagnose von einem Arzt erhalten. Ich glaube, es ist nicht leicht als behinderter Mensch den Weg zurück in den Alltag eines unabhängigen Lebens zu finden. In den 24 Jahren seit ich meine Diagnose erhalten habe gab es viele Dinge, die mir dabei geholfen haben mit meiner Behinderung klarzukommen.“ (Nipapan, Thailand) „Anfang November 2002 fiel ich bei einem Reitturnier vom Pferd eines Freundes. Ich leide seitdem an einer inkompletten Querschnittlähmung (C6-7), kann aber meine Arme gut bewegen. Ich kann zwar nicht zugreifen, aber verfüge noch über eine ausreichende Funktionalität der Hände, so dass ich bestimmte Dinge tun kann, wie etwa ein Weinglas halten (sehr wichtig!) oder unterschreiben.“ (Anonym, Neuseeland)
2
Querschnittlähmung – global betrachtet Laut Artikel 31 der UN-Konvention über die Rechte von Menschen mit Behinderungen (BRK) verp ichten sich die Vertragsstaaten dazu, statistische Daten zu sammeln, die es ihnen ermöglichen, politische Konzepte zu formulieren und umzusetzen zur Anwendung der Rechte, die in der Konvention festgelegt wurden. Ziel ist es, dass Menschen mit Querschnittlähmung (QSL) und anderen Behinderungen in vollem Umfang in allen Bereichen der Gesellscha teilhaben können – vom Familienleben über Bildung und Beschä igung bis hin zum Leben in ihrem persönlichen Umfeld und im Land. Gültige und verlässliche Daten über QSL sind wichtig, um fundierte Entscheidungen tre en zu können in Bezug auf Programme und politische Konzepte zur Vermeidung von QSL, zur Verbesserung des Lebens der Betro enen und zur Antizipation von kün igem Bedarf an Dienstleistungen in diesem Bereich. Um den gesamten sozioökonomischen Ein uss von QSL zu verstehen, bedarf es eines epidemiologischen Gesamtbildes – dazu gehören sowohl Daten über die Gesamtanzahl der Menschen, die mit QSL leben (Prävalenz), als auch die Anzahl der neuen Fälle (Inzidenz) und die Ursachen von QSL (De nitionen von Indikatoren sind der Tabelle 2.1 zu entnehmen). Diese Informationen müssen in regelmäßigen Abständen gesammelt werden, um kün ige Entwicklungen voraussagen zu können. Evidenzbasierte Maßnahmen und Programme auf nationaler Ebene erfordern auch Informationen über Umweltfaktoren, die das Leben mit QSL beein ussen, sowie Informationen über die sozioökonomischen Umstände der Betro enen, ihre befriedigten und unbefriedigten Bedürfnisse und die Kosten, die durch QSL verursacht werden. Dieses Kapitel liefert grundlegende epidemiologische Informationen unter Verwendung der Indikatoren (vgl. Tabelle 2.1 ) Prävalenz, Inzidenz, Mortalität, Ursachen und Kosten von traumatischer und nicht-traumatischer Querschnittlähmung (TQSL und NTQSL). Des Weiteren werden Daten und Evidenz im Bereich QSL diskutiert und Verbesserungsmöglichkeiten erörtert. Die dargestellten Informationen entstammen Peer-Review Artikeln aus wissenscha lichen Journalen, amtlichen Verö entlichungen und Berichten prospektiver und retrospektiver Studien – die Daten wurden QSL-Registern, Bevölkerungsregistern, Aufzeichnungen über Krankenhauseinweisungen und –entlassungen und Gesundheitserhebungsdaten entnommen. Eigens für diesen Bericht wurden systematische Begutachtungen von Verö entlichungen zur Epidemiologie von 15
Kapitel 2
Querschnittlähmung – global betrachtet
QSL aus dem Zeitraum Januar 2000 bis August 2012 durchgeführt. Gegebenenfalls wurde eine Meta-Analyse durchgeführt. Genauere Informationen zur Methodik der Datengewinnung und deren Grenzen können den Technischen Anhängen A und B entnommen werden.
Was wissen wir über Querschnittlähmung? Die Daten über das Aumaß und die Kosten in Verbindung mit QSL sind begrenzt. Nur eine Handvoll Länder mit hohem Nationaleinkommen sind in der Lage, nationale Statistiken zur Verfügung zu stellen. Andere Informationsquellen sind so selten und methodologisch so vielfältig, dass es unmöglich ist, verlässliche Punktschätzungen zur weltweiten Prävalenz und Inzidenz zu ermitteln. Die besten verfügbaren Daten im Bereich QSL liefern ein allgemeines Bild, das im Folgenden zusammengefasst wurde und im weiteren Verlauf des Kapitels genauer untersucht wird. QSL ist ein relativ seltener, aber lebensverändernder und kostenintensiver Gesundheitszustand, mit einer Sterblichkeitsrate, die je nach Nationaleinkommen enorm variiert und stark abhängt von der Verfügbarkeit qualitativ hochwertiger klinischer Versorgung und Rehabilitation. Es ist unklar, wieviele Menschen weltweit aktuell mit einer QSL leben, aber internationalen Inzidenzdaten zufolge erleiden jährlich zwischen 250.000 und 500.000 Menschen eine QSL. Dies sind mehrheitlich Fälle von traumatischer QSL, deren Hauptursachen Verkehrsunfälle, Stürze und Gewalt sind. Jüngste Studien zeigen einen Anstieg des Alters bei Eintritt der QSL und einen leichten Anstieg des Anteils an nicht-traumatischen QSL – dies ist teilweise zurückzuführen auf die alternde Weltbevölkerung. Aktuelle Daten zeigen ebenfalls, dass QSL mit einem erhöhten Todesrisiko einhergeht. Im ersten Jahr nach Eintreten der QSL ist das Todesrisiko für die Betro enen am höchsten. Selbst in Ländern mit hohem Nationaleinkommen, in
denen Fortschritte in der medizinischen Versorgung die Überlebenschancen verbessert haben, tragen Menschen mit QSL nach wie vor ein höheres Sterblichkeitsrisiko und sterben wahrscheinlich früher als die Allgemeinbevölkerung. Auch heute noch sterben Menschen mit QSL in Ländern mit niedrigem Nationaleinkommen an vermeidbaren sekundären Gesundheitsproblemen, die in Ländern mit hohem Nationaleinkommen nicht mehr zu den Haupttodesursachen zählen. Die Kosten in Verbindung mit QSL schwanken je nach Kontext erheblich – es sind nur sehr wenige Vergleichsdaten verfügbar. Aus den bestehenden Daten geht klar hervor, dass QSL sowohl erhebliche direkte als auch indirekte Kosten verursacht – ein großer Teil der Kosten wird von den Betro enen selbst getragen. Die Läsionshöhe und die Schwere der QSL beein ussen die Kosten enorm. Die direkten Kosten sind im ersten Jahr nach Eintreten der Verletzung am höchsten . Über den Lebensverlauf hinweg übersteigen die indirekten Kosten mit hoher Wahrscheinlichkeit die direkten Kosten. Die Qualität und Quantität der gesammelten Daten zum ema QSL müssen dringend verbessert werden. Probleme mit den entsprechenden Daten und Vorschläge zur Verbesserung der Evidenz werden am Ende dieses Kapitels erörtert.
Prävalenz von Querschnittlähmung Daten zur Prävalenz von QSL sind wichtig, um den Bedarf an medizinischer Versorgung und gesellscha licher Unterstützung zu messen, und um den Ein uss sekundärer Präventionsmaßnahmen zu bewerten. Leider sind die Daten zur Prävalenz von QSL rar. Aktuell gibt es keine verlässlichen globalen oder regionalen Schätzungen zur Gesamtprävalenz von QSL. Hier werden Schätzungen aus sechs Ländern aufgelistet (vgl. Tabellen 2.2 und 2.3). Einige Schätzungen, die man in der Literatur ndet, wurden nicht berücksichtigt, da entweder methodologische Probleme vorlagen oder die Daten stark veraltet waren und nicht die aktuelle Situation widerspiegeln. 17
Kapitel 2
Querschnittlähmung – global betrachtet
und Rehabilitationsmedizin für Menschen mit QSL in den vergangenen 60 Jahren. Sekundäre Gesundheitsprobleme in Verbindung mit QSL sind nicht länger die Haupttodesursache querschnittgelähmter Menschen in Ländern mit hohem Nationaleinkommen. In ressourcenreichen Ländern gab es eine Verschiebung im Bereich der Haupttodesursachen und zwar weg von urologischen Komplikationen (wie etwa Urosepsis oder Nierenversagen) hin zu Todesursachen, ähnlich denen der allgemeinen Bevölkerung, wie etwa Atemwegserkrankungen (besonders Lungenentzündung und Grippe) (11, 50, 130, 133, 134). Einige Studien ergaben höhere Mortalitätsraten infolge von Herzkrankheiten, Selbstmorden und neurologischen Erkrankungen (11, 50, 127, 130, 133). Querschnittgelähmte Menschen sterben jedoch häu ger an diesen Krankheiten als die allgemeine Bevölkerung. Die Ergebnisse einer norwegischen Studie weisen beispielsweise auf ein insgesamt höheres Mortalitätsrisiko im Falle von Atemwegserkrankungen bei Menschen mit QSL hin, verglichen mit der Allgemeinbevölkerung – die SMR beträgt hier 1,96 (135). Eine Studie in Australien ergab eine fallspezi sche SMR von 17,11 für Lungenentzündung und Grippe, 4,37 für Selbstmord und 6,84 für Erkrankungen des Harntraktes (34). Laut einer norwegischen Studie zählen Atemwegserkrankungen, ischämische Herzkrankheiten, Krebs und Selbstmord zu den häu gsten Todesursachen (57). In Ländern mit niedrigem Nationaleinkommen sterben Menschen mit QSL weiterhin an vermeidbaren sekundären Gesundheitsproblemen, wie etwa urologischen Komplikationen und Dekubitus. In Ländern mit geringem Nationaleinkommen gibt es nur wenige Daten, aufgrund der extrem hohen Anzahl an versäumten Nachuntersuchungen (41). Vereinzelten Belegen zufolge sind jedoch die urologischen Komplikationen nach wie vor eine häu ge Todesursache (136). Tödliche Infektionen durch unbehandelte Fälle von Dekubitus infolge von mangelnder und angemessener medizinischer Versorgung zählen
zu den häu gsten Todesursachen in Ländern mit niedrigem Nationaleinkommen (45, 136). Die Mortalitätsraten von Menschen mit QSL werden stark beein usst durch die Leistungsfähigkeit des Gesundheitssystems, insbesondere die der Notfallversorgung. Der Transport und die Dauer bis zur Aufnahme im Krankenhaus nach einer Verletzung spielen eine wichtige Rolle für das Überleben. Die ersten 24 Stunden nach einer QSL sind am wichtigsten in Bezug auf das Überleben. Laut einer nigerianischen Studie zählen zu Prädiktoren für Mortalität nach sechs Wochen unter Anderem eine nicht ausgestreckte Position des Patienten während des Transports (Wahrscheinlichkeitsverhältnis von 23,52) und eine Vorstellung des Patienten im Krankenhaus 24 Stunden oder später nach Eintreten der Verletzung (Wahrscheinlichkeitsverhältnis von 5,48). Während die Gesamtmortalität während der stationären Behandlung in den einkommensstarken Ländern Kanada und den USA bei 11,6% respektive 6,1% liegt (137, 138), beträgt die durchschnittliche Mortalitätsrate in Sierra Leone 29% (45) und in Nigeria knapp 35% (41). Dies zeigt, wie wichtig es ist, im Falle eines Verdachts auf QSL diese schnell zu erkennen, früh zu beurteilen und angemessen zu behandeln (139). In einer großen, retrospektiven Studie wurden die Ergebnisse von 324 Patienten in Australien untersucht, die mit dem Rettungswagen transportiert und in einer Einrichtung für QSL aufgenommen wurden. Dieser Studie zufolge wurden die Patienten nur in die Einrichtung für QSL gebracht, weil die Rettungssanitäter gut ausgebildet waren in der Erkennung physiologischer Anzeichen von QSL – dort wurde bei fast 88% der Patienten eine QSL diagnostiziert ((75), vgl. Kasten 2.2). Im Allgemeinen zeigen die Mortalitätsraten in Krankenhäusern wie wichtig eine qualitativ hochwertige Versorgung für das Überleben von Menschen mit QSL ist. Diese Daten können auch Aufschlüsse über die allgemein verfügbaren Ressourcen des Landes geben.
29
Querschnittlähmung – Internationale Perspektiven
Kasten 2.2. Angemessene Erstversorgung direkt nach Eintreten der Verletzung reduziert die Anzahl der Todesfälle und sekundären Gesundheitsprobleme Von 2004 bis 2008 wurden in einer großen, retrospektiven Studie die Ergebnisse von 324 Patienten in Australien untersucht, die mit dem Rettungswagen transportiert und in einer Einrichtung für QSL aufgenommen wurden. Bei den meisten Patienten ergab die Messung der Vitalfunktionen am Unfallort Normalwerte – aufgrund der Art der Verletzung wurden sie aber von den Rettungssanitätern als Patienten mit Verdacht auf QSL behandelt. Diese Vorgehensweise hat viele Leben gerettet, denn bei der Aufnahme in der Einrichtung für QSL wurde in 88% aller Fälle eine QSL diagnostiziert. Im Durchschnitt wurden die Patienten in weniger als 12 Stunden nach Eintreten der Verletzung in die QSL-Einrichtung eingeliefert. Wurde der Patient jedoch zunächst in ein allgemeines Traumazentrum gebracht, dauerte es häufig länger als 24 Stunden, bis der Patient von Spezialisten für QSL behandelt wurde. Bei diesen Patienten war das Risiko für sekundäre Gesundheitsprobleme 2,5 Mal so hoch verglichen mit Patienten, die direkt in eine Einrichtung mit QSL-Station gebracht wurden. Die Studie verdeutlichte ebenfalls, dass die Patienten im Falle einer Verletzung infolge eines Sturzes aus geringer Höhe ausnahmslos älter waren, jedoch von den Rettungssanitätern weniger häufig als Patienten mit Verdacht auf QSL behandelt wurden. Dies erforderte zusätzliche Transporte zwischen den einzelnen Einrichtungen, so dass weniger als die Hälfte dieser Gruppe die Einrichtung für QSL innerhalb von 24 Stunden erreichten – dies führte zu einem erheblichen Anstieg der Anzahl an Todesfällen und sekundären Gesundheitsproblemen. Angesichts der alternden Bevölkerung und der vermehrten Inzidenz von QSL infolge von altersbedingten Stürzen aus geringer Höhe, weist die Studie darauf hin, dass ältere Patienten mit Verletzungen durch Stürze aus geringer Höhe sorgfältiger beurteilt und als Patienten mit Verdacht auf QSL eingestuft werden sollten. Quelle (75 ).
Kosten in Verbindung mit Querschnittlähmung Die direkten und indirekten Kosten von QSL sind wichtig für die Bewertung der wirtscha lichen und sozialen Auswirkungen von QSL. Zu den direkten Kosten zählen Gesundheitsund Rehabilitationsdienste, kostenintensivere Transportmöglichkeiten, spezielle Ernährung und persönliche Unterstützung. Bei den indirekten Kosten unterscheidet man zwischen wirtscha lichen und nicht-wirtscha lichen Kosten. Hierzu zählt unter anderem der Verlust der Produktivität durch frühzeitigen Tod oder Behinderung, soziale Isolation und Stress. Die Kosten in Verbindung mit QSL werden in hohem Maße von den folgenden Faktoren beein usst: ■ Die Art der ursprünglichen Verletzung oder der zugrundeliegenden Krankheit. Bei TQSL werden die Kosten durch die Höhe und Schwere der Verletzung beeinflusst 30
■ ■
■
(140 –144); bei NTQSL durch die Schwere der zugrundeliegenden Krankheit (145, 146). Die Dauer bis zur Behandlung, insbesondere zwischen Eintritt der Verletzung und der Einleitung einer angemessenen Erstversorgung. Die Dauer des Krankenhausaufenthalts – einschließlich der Erstaufnahme (146) jeglicher Wiederaufnahme verursacht durch das Unvermögen gesundheitliche Folgen von sekundären Gesundheitsproblemen zu vermeiden oder zu behandeln. Es liegen Daten vor, die darauf hindeuten, dass es keine geschlechterspezifischen Unterschiede in Bezug auf die Kosten gibt (147). Die direkten medizinischen Kosten – einschließlich Rollstühle und Beatmungsgeräte.
Ein Ländervergleich der Daten in Bezug auf die Kosten muss mit Sorgfalt durchgeführt werden. Direkte Vergleiche zwischen den Ländern hinsichtlich der „Kostenschätzung von QSL“ sind schwierig. Es werden verschiedene
Kapitel 2
Querschnittlähmung – global betrachtet
Kategorien von direkten und indirekten Kosten verwendet und Kostenschätzungen hängen ab von verschiedenen statistischen Verfahren und Daten von unterschiedlicher Qualität. Selbst innerhalb eines Landes variiert die Schäzung der direkten Gesundheitskosten je nach Quelle der Daten (148–150). Ein allgemeines Bild der Kosten in Verbindung mit QSL lässt sich aus den verfügbaren Daten zeichnen – auch wenn keine regionalen oder globalen Schätzungen berechnet werden können: 1. Die Höhe und Schwere der Verletzung haben einen maßgeblichen Einfluss auf die Kosten. Eine höhere Läsionshöhe verursacht höhere Kosten (z.B. Tetraplegie vs. Paraplegie) und die Kosten in Verbindung mit einer kompletten QSL sind höher als die Kosten einer inkompletten QSL. 2. Die Kosten in Verbindung mit NTQSL sind in der Regel geringer als die Kosten von TQSL. Dies hängt meist mit dem Alter beim Eintreten der Verletzung zusammen. 3. Die direkten Kosten sind am höchsten im ersten Jahr nach Eintreten der QSL und nehmen mit der Zeit deutlich ab. 4. Die indirekten Kosten können, insbesondere durch den Verlust der Produktivität, die direkten Kosten übersteigen. 5. Ein Großteil der Kosten wird von Menschen mit QSL getragen. Diese Punkte werden im Folgenden noch im Detail diskutiert. 1. Höhe und Schwere der Verletzung beeinussen die Kosten maßgeblich (134, 151, 152). Tetraplegie ist mit höheren Kosten verbunden als Paraplegie (42, 153, 154). Laut Daten des National Spinal Cord Injury Statistical Center in den USA aus dem Jahr 2013 werden die über die gesamte Lebensdauer anfallenden Kosten einer Person, die die Verletzung im Alter von 25 Jahren erleidet, auf 4,6 Millionen US-Dollar geschätzt im Falle einer hohen Tetraplegie, verglichen mit 2,3 Millionen US-Dollar im Falle einer Paraplegie. In Australien wurden die lebenslangen
Kosten pro Inzidenzfall auf 5,0 Millionen Australische Dollar pro Person mit Paraplegie und aus 9,5 Millionen pro Person mit Tetraplegie geschätzt (154). Im Rahmen dieser australischen Studie wurden auch die Kosten in Verbindung mit diversen neurologischen Erkrankungen, wie etwa Demenz, multiple Sklerose, Zerebralparese und bipolaren Störungen untersucht. Dabei fand man heraus, dass die Kosten, die durch Tetraplegie entstehen 2-20 Mal höher sind, als die Kosten, die durch diese Krankheiten verursacht werden (154). In Bezug auf die Schwere haben einige Studien gezeigt, dass die Kosten in Verbindung mit einer kompletten Lähmung höher sind, als die einer inkompletten Lähmung. Beispielsweise belaufen sich laut kanadischer Daten zu den durchschnittlichen direkten Kosten, die auch Krankenhausaufenthalte, ärztliche Dienste, häusliche P ege und Langzeitp ege mit einschlossen, die durchschnittlichen zurechenbaren Kosten im ersten Jahr auf $121.600 (2002 Kanadische Dollar) pro Person mit kompletter QSL und auf $42.100 pro Person mit inkompletter QSL. In den folgenden 5 Jahren belaufen sich die jährlichen Kosten auf $5400 respektive $2800 bei Menschen mit kompletter und inkompletter QSL, ((144), vgl. Abbildung 2.11). 2. Die Kosten in Verbindung mit NTQSL sind in der Regel geringer als die Kosten von TQSL aufgrund des Alters bei Eintreten der QSL. NTQSL betri normalerweise ältere Menschen. Somit sind die indirekten Kosten, die über den Rest des Lebens anfallen, niedriger. Dies liegt in erster Linie daran, dass die Betroffenen nicht mehr zur arbeitenden Bevölkerung zählen. Eine Ausnahme bildet hier Spina bi da – nicht nur, weil diese Krankheit bereits im Kindesalter beginnt, sondern auch aufgrund der hohen Ausgaben für Dienstleistungen in den Bereichen Entwicklung und Verhalten sowie für P egedienste (155 –157). 3. Die direkten Kosten sind am höchsten im ersten Jahr nach Eintreten der QSL und nehmen mit der Zeit deutlich ab (134, 151, 152). Laut Datenbank des National Spinal Cord Injury 31
Kapitel 2
Querschnittlähmung – global betrachtet
Kasten 2.3. Ein Beispiel für ein QSL-Register Das Rick Hansen Spinal Cord Injury Registry ist eine kanadaweite Datenbank, die Daten zu Patienten enthält, die in 31 großen Trauma- und Rehabilitationseinrichtungen in allen Provinzen aufgenommen wurden. Aktuell sind Fälle von NTQSL und inkompletter TQSL (D) noch nicht erfasst, da diese häufig in kommunalen Krankenhäusern behandelt werden, die vom Register nicht abgedeckt werden. Das Register wird von der kanadischen Landesregierung und den Provinzregierungen, teilnehmenden Registern und der Rick Hansen Stiftung finanziert. Verschiedene Finanzierungsquellen gewährleisten eine beständige und verlässliche Finanzierungsbasis – dies ist der Schlüssel zu einem nachhaltigen Register. Jede teilnehmende Einrichtung rekrutiert Patienten, holt deren Zustimmung ein und sammelt die Daten, die dann zentral und in anonymer Form gespeichert werden. Insgesamt wurden 260 Datenelemente aus dem Bereich der Erstversorgung, der akuten und stationären Rehabilitation und der Zeit nach der Entlassung in das persönliche Umfeld gesammelt, ebenso wie soziodemographische Faktoren und Informationen zu Krankheitsgeschichte, Verletzung, Diagnose und Maßnahmen, neurologischen Schädigungen, Komplikationen und Beurteilung der Ergebnisse durch die Patienten selbst. Die Teilnehmer werden 1, 2, 5 und 10 Jahre nach der Entlassung kontaktiert und dann anschließend alle 5 Jahre, um einen Ergebnisfragebogen zu vervollständigen. Die Datenelemente werden angepasst an die International Core Data Sets und die International Standards for Neurological Classification of SCI. Sie werden mit anderen Registern verlinkt, um Doppelungen zu vermeiden. Das Register hat die klinische Versorgung wie folgt verbessert:
■ Standardisierte Bewertung und Kodierung der klinischen Verfahrensweisen. Somit sind die Ergebnisse besser vergleichbar.
■ Die Identifizierung von Entwicklungen im Laufe der Zeit in Bezug auf den Mitarbeiterbedarf; ■ Die Bereitstellung von Informationen für Mitarbeiter und Patienten anlässlich gemeinschaftlicher Follow-Up-Bewertungen. Das Register hat ebenso die klinische Forschung erleichtert da:
■ Menschen ausfindig gemacht wurden, die daran interessiert sind an Studien teilzunehmen; ■ Die Belastung für die befragten Personen reduziert werden konnte, durch hinzugefügte Informationen für klinische Studien;
■ Eine Durchführbarkeitsbewertung der Einrichtungen ermöglicht wurde, die an klinischen Studien teilnehmen; ■ Gezeigt werden konnte, wie Patienten das kanadische Gesundheitssystem durchlaufen. Ebenso wurden die Unterschiede in Bezug auf die Verfügbarkeit und Finanzierung der Versorgung in den verschiedenen Provinzen aufgezeigt. Quellen (160, 161).
Klassi kation der Krankheiten (ICD), die verwendet werden kann, um Krankheiten oder andere Gesundheitsprobleme zu klassi zieren, für Gesundheits- und Lebensdaten, einschließlich Sterbeurkunden und Gesundheitsakten. So lassen sich auch Inzidenz und Prävalenz von Krankheiten beobachten. In vielen Ländern werden Aufzeichnungen auf Grundlage der ICD auch zu Erstattungszwecken genutzt und um Entscheidungen bezüglich der Ressourcenverteilung zu tre en (165).
Die Internationale Klassi zierung Externer Ursachen von Verletzungen (ICECI) wird eingesetzt, um die Umstände des Au retens der Verletzungen zu beschreiben, zu messen und zu beobachten; dazu zählen auch der Mechanismus der Verletzung, die Objekte oder Substanzen, die die Verletzung verursacht haben, der Ort des Eintretens der Verletzung, die Tätigkeit bei Eintreten der Verletzung und die Frage, inwieweit menschlicher Vorsatz, Alkohol und andere Mittel wie Psychopharmaka beteiligt waren. Es 35
Querschnittlähmung – Internationale Perspektiven
gibt auch weitere Module zur Sammlung von Daten über Gewalt, Verkehr, Ort, Sport- und Arbeitsverletzungen. Das System der Gesundheitsberichte (SHA) ist ein standardisiertes Rahmenwerk zur Sammlung international vergleichbarer Gesundheits-Finanzberichte, gegliedert nach Interventionen, zur Anwendung im ö entlichen und privaten Bereich (166). Es gibt zudem drei QSL-spe zische Standards. Bei den International Standards for Neurological Classi cation of SCI der American Spinal Injury Association (ASIA) handelt es sich um einen Standard zur Bewertung und Klassi zierung des neurologischen Niveaus und des Ausmaßes der QSL. Das Klassi zierungssystem enthält drei Elemente: Die ASIA Impairment Scale (AIS A-E); Motor Score (basierend auf der neurologischen Untersuchung der Muskelfunktion) und Sensory Score (basierend auf der neurologischen Untersuchung der sensorischen Funktion). Dieser Standard wurde kürzlich von ASIA und ISCoS gemeinsam überarbeitet. Er liefert verlässliche Daten für die klinische P ege und für Forschungsstudien (167–170). Die International Spinal Cord Injury (SCI) Data Sets wurden von der ISCoS entwickelt, um Verletzungen und Ergebnisse verschiedener Patienten, Zentren und Länder leichter vergleichen zu können (171, 172). Zu den Datensätzen gehören auch der International SCI Core Data Set (173) und die International Spinal Cord Injury Non-traumatic Data Sets (174). Dies sind die wichtigsten Datensätze zur Standardisierung von epidemiologischen Basisdaten, einschließlich der Ätiologie von QSL und der Berichte (175). Von Bedeutung ist hier die ISCoS-Initiative zur Standardisierung von Daten über die globalen epidemiologischen Entwicklungen im Bereich QSL (176). Die ICF Core Sets for SCI (Lang- und Kurzfassung) sind internationale Datensätze, die in der klinischen Arbeit und in der Forschungsarbeit zu QSL eingesetzt werden können (177). Core Sets für postakute P ege und Langzeitp ege 36
wurden 2010 entwickelt unter Verwendung der Internationalen Klassi kation der Funktionsfähigkeit, Behinderung und Gesundheit (ICF), um darüber hinaus die Vergleichbarkeit mit anderen Bereichen von Statistiken über Behinderungen zu gewährleisten (177–179).
Probleme und Bedenken in Bezug auf Daten Angesichts des Mangels an Daten zu QSL, besteht ein dringender Bedarf noch mehr globale Daten zu sammeln. Auch die Qualität der Daten muss verbessert werden. Im Folgenden Abschnitt werden einige der häu gsten Einschränkungen hinsichtlich der Erhebung von Daten zu QSL erörtert.
Definitionen und Standardisierung der Daten Es bestehen Unterschiede bei den Fallde nitionen von QSL und den Einschlußkriterien, die die Vergleichbarkeit der Daten innerhalb der Länder und zwischen den Ländern in allen Bereichen beein ussen. Allgemeine medizinische De nitionen sind klinisch funktional, aber nicht ausreichend vergleichbar hinsichtlich der Epidemiologie, z.B. „Eine Querschnittlähmung ist eine Schädigung des Rückenmarks, die einen Verlust von Wahrnehmung und motorischer Kontrolle zur Folge hat.“ (180). Die klinische De nition von QSL, die von den US Centers for Disease Control (CDC) verwendet wird, lautet wie folgt: „eine akute, traumatische Verletzung der neuralen Elemente im Spinalkanal, die eine temporäre oder permanente sensorische Störung, motorische Störung oder Fehlfunktion von Darm/ Blase zur Folge hat“. Diese De nition schließt Fälle von traumatischer QSL mit ein, deren Ursache ein externes Ereignis ist und nicht etwa eine Krankheit oder Degeneration. Somit sind Bandscheibenleiden, Wirbelverletzungen ohne QSL, Verletzungen und Abrisse der Nervenwurzel, periphere Nerven außerhalb des Spinalkanals,
Kapitel 2
Querschnittlähmung – global betrachtet
Krebs, vaskuläre Rückenmarkserkrankungen und andere nicht-traumatische Rückenmarkserkrankungen ausgeschlossen (181).
Untererfassung Untererfassung sowohl von QSL als auch von Todesfällen durch QSL sind ein großes Problem in Ländern mit niedrigem und mittlerem Nationaleinkommen (130, 182, 183). Wie die meisten akuten Traumata ist auch TQSL mit einer hohen Mortalitätsrate verbunden. Wenn der Trauma-Notdienst den Todesfall nicht gemäß dem ICD-Code melden muss, oder überfordert ist während eines Notfalls, geht diese Information verloren (55, 184, 185). Dies führt zu einer künstlichen Verringerung der Inzidenz und der Todesfallraten (186). Selbst in ressourcenreichen Ländern kann es schwierig sein, verlässliche Informationen zu Prävalenz und Inzidenzschätzungen zu erhalten. Nur wenige Länder in der Welt führen QSL-Register und die bestehenden Register erfassen nicht alle Bereiche. Selbst in Ländern mit guten Statistiken zu QSL liegt der Fokus häu g auf TQSL, was zu einer deutlichen Untererfassung der Fälle von NTQSL führt (89). Ein Register für NTQSL anzulegen, wie es für TQSL besteht, wäre zu teuer, zeitaufwändig und unpraktisch, denn bei Menschen mit NTQSL erfolgen die Behandlung und Rehabilitation, aufgrund der unterschiedlichen Ursachen, in mehreren Versorgungsumfeldern. Häu g erhalten sie keine speziell auf QSL abgestimmte Rehabilitation (88).
■
■
■ ■ ■ ■
führen, wenn Frakturen der Wirbelsäule oder Kontusionen ohne neurologische Symptome falsch kodiert werden (20). Die meisten Daten zu Inzidenz und Prävalenz entstammen Umfragen, die nur in einem Krankenhaus durchgeführt wurden. Diese können eventuell nicht für den Rest des Landes verallgemeinert werden. Die Angemessenheit der Werkzeuge. ICD-10 definiert QSL nicht speziell, nutzt aber verschiedene Codes zur Bestimmung von Frakturen, traumatischen Brüchen, Dislokation von Wirbeln und kompletten und inkompletten Läsionen. In der Praxis sind die Daten, die mithilfe dieser Codes zusammengetragen wurden, nicht verlässlich genug für die epidemiologische Forschung (187 ). Inkonsistente Verwendung der Terminologie, z.B. im Bereich der Literatur zu Spina bifida. Relativ geringe Fallzahlen. Wissenschaftlich fundierte Methoden zur Bestimmung der Inzidenz/Prävalenz. Mangel an verfügbaren Daten zu den Ursachen von QSL.
Schlußfolgerung und Empfehlungen Unter Verwendung der besten verfügbaren Daten aus aller Welt, liefert dieses Kapitel Informationen zur Inzidenz und Prävalenz, Entwicklungen und Kosten von QSL. Die Schlußfolgerungen sind unverbindlich angesichts der Qualität und Knappheit der Daten in einigen Regionen der Welt. Verlässliche Daten und Evidenz sind wichtig, um Aussagen zur Anzahl der betro enen Menschen und zum Ein uss von QSL auf ihr Leben machen zu können. Ebenso sind sie von Bedeutung für die Bewertung der Ursachen, die Entwicklung und Bewertung von Behandlungsmethoden, die Bereitstellung von Informationen für Politiker und Entscheidungsträger und die Bewusstseinsbildung. Ohne verlässliche 37
Weitere Probleme Studien haben einige weitere Probleme in Verbindung mit Daten und Evidenz zu QSL ans Tageslicht gebracht. Dazu zählen: ■ Das Führen von Krankenakten, welches zu fehlenden oder fehlerhaften Informationen in individuellen Aufzeichnungen führt. Eine falsche ICD-Kodierung kann beispielsweise zu einer Übererfassung von QSL-Fällen
Querschnittlähmung – Internationale Perspektiven
Informationen ist es nicht möglich, rational oder zufriedenstellend Prioritäten in Bezug auf Prävention und Versorgung im medizinischen Bereich und im P egebereich festzulegen. Es besteht ein weltweiter Bedarf an stabileren, verlässlicheren, vergleichbareren und umfassenderen Daten zu QSL, die in den Bereichen Forschung, klinische Versorgung und politische Konzepte verwendet werden können. Insbesondere sind diese Daten auch nötig, um Menschen mit QSL vollständig in die nationale Überwachung der Umsetzung der Bestimmungen der BRK einbeziehen zu können. In diesem Sinne können die folgenden Empfehlungen dazu beitragen, die Verfügbarkeit und Qualität der Daten zu QSL zu verbessern.
■
Sicherstellen, dass sämtliche Daten zu QSL angegeben werden unter Verwendung von mindestens dem International SCI Core Data Set.
Nationale Statistiken zu Querschnittlähmung verbessern Am besten lassen sich Daten zu QSL mithilfe eines QSL-Registers erheben, das die Daten direkt aus den Krankenhäusern und anderen Einrichtungen des Gesundheitswesens sammelt und sie in einer Datenbank erfasst, die idealerweise von einer Regierungsbehörde, wie beispielsweise dem NSCISC in den USA, verwaltet wird. Register stellen Längsschnittdaten zur Verfügung, die wichtig sind zur Bestimmung der Inzidenz-Entwicklungen. Diese wiederum sind von Bedeutung für Präventionsprogramme und andere Maßnahmen in Bezug auf QSL und die Bedürfnisse der Betro enen. Sollte ein solches Register nicht verfügbar sein, können die folgenden Strategien dazu beitragen, die Datenerhebung maßgeblich zu verbessern. ■ Im Rahmen des nationalen Erhebungssystems von Daten zu Gesundheit und Behinderung international vergleichbare Informationen zu QSL sammeln. Es sollte sichergestellt werden, dass die Daten nach standardisierten Kategorien aufgegliedert werden können, die relevant sind für die Auswertung der Inzidenzentwicklung – zumindest jedoch nach Geschlecht, Alter und Ätiologie. ■ Die Daten zu QSL im Rahmen von Jahresberichten zur Verfügung stellen, die im Internet veröffentlicht werden und durchsuchbar sind, so dass die Daten leicht gefunden werden können. ■ Krankenhäuser und andere Einrichtungen des Gesundheitswesens dazu ermutigen, unter Inkaufnahme minimaler Zusatzkosten, durch angemessene Aufzeichnungen Daten zu QSL zu sammeln und anschließend
Die Vergleichbarkeit durch Anwendung internationaler Standards bei der Datenerhebung verbessern Sowohl die International Standards for Neurological Classification of Spinal Cord Injury, als auch die Internationale Klassifizierung Externer Ursachen von Verletzungen (ICECI) und die Internationale Klassifikation der Funktionsfähigkeit, Behinderung und Gesundheit (ICF) der WHO sollten konsequent verwendet werden, um einen universellen Rahmen zu schaffen für alle Daten zu Gesundheit und Behinderung. Die International SCI Data Sets sind frei verfügbar auf der Internetseite der ISCoS – sie tragen weiterhin zur Vergleichbarkeit der QSL-Daten bei. Die Länder können: ■ Die ICECI und ICF formal annehmen, als grundlegende Standards zur nationalen Datenerhebung bei jeder Sammlung gesundheitsbezogener Daten; ■ Sicherstellen, dass sämtliche Daten zu QSL unter Verwendung der ICECI-Terminologie und des Modells zu Behinderung der ICF erhoben werden;
38
Kapitel 2
Querschnittlähmung – global betrachtet
■
■ ■
ein Format zu verwenden, das auf internationalen Datenstandards basiert. QSL-relevante Fragen können in Bevölkerungsumfragen zum Thema Gesundheit und Behinderung integriert werden. Dies gilt insbesondere für Volkszählungen, nationale Haushaltsbefragungen und Gesundheitsumfragen, und allgemeine wirtschaftliche und sozialwissenschaftliche Umfragen. QSL-spezifische Daten durch spezielle Umfragen erheben nach Naturkatastrophen wie beispielsweise Erdbeben. Die Ressourcen der ISCoS und anderer professioneller Organisationen im Bereich QSL nutzen, um die Möglichkeit zu prüfen, eine standardisierte Aufzeichnungsmethode für NTQSL sowie ein prospektives QSL-Register für TQSL und NTQSL zu entwickeln.
■
■
■
Forschung zu Querschnittlähmung fördern und verbessern Um solide lokale Daten zu erhalten, müssen Länder in allen Regionen danach streben, die Forschung im Bereich QSL zu verbessern und zu unterstützen. Dies schließt besonders Längsschnitt- und Kohortenstudien mit ein. ■ QSL-relevante Themen sollten Bestandteil des Lehrplans von medizinischem Fachpersonal und verwandten Berufsgruppen sein. Dies dient der Bewusstseinsbildung hinsichtlich QSL und ermutigt junge Wissenschaftler
■
dazu, QSL als Forschungsgebiet in Betracht zu ziehen. Wissenschaftler können ermutigt werden, mit Behörden zusammenzuarbeiten, die für Präventionsprogramme zuständig sind. So können Präventionsstrategien mit Inzidenzdaten belegt werden und die Forscher können eingebunden werden in die Überwachung und Bewertung von Präventionskampagnen. Ein umfassender Rahmen sollte entwickelt werden, der die direkten und indirekten Kosten in Verbindung mit QSL bestimmt und standardisiert. Die Datenelemente sollten dann integriert werden in administrative und nationale Instrumente zur Datenerhebung, um ein besseres Verständnis der sozialen Kosten von QSL zu ermöglichen. Menschen, die direkt von QSL betroffen sind sollten einbezogen werden in die Ausarbeitung von Fragen für Umfragen und für andere Methoden der Datenerhebung, die Daten zur gelebten Erfahrung im Bereich QSL sammeln. Daten, die auf diese Weise gesammelt werden, können an die bereits bestehenden Datensätze zu QSL angeglichen werden. Forschung im Bereich NTQSL sollte unterstützt werden, um die Evidenzbasis in Bezug auf Inzidenz, Überlebensraten, Prävalenz, Ätiologien und Strategien zum Gesundheitsmanagement zu erweitern.
Quellen 1. 2. 3. 4. 5. Noonan VK et al. Incidence and prevalence of spinal cord injury in Canada: a national perspective. Neuroepidemiology, 2012, 38:219-226. doi: http://dx.doi.org/10.1159/000336014 PMID:22555590 Knútsdóttir S et al. Epidemiology of traumatic spinal cord injuries in Iceland from 1975 to 2009. Spinal Cord, 2012, 50:123126. doi: http://dx.doi.org/10.1038/sc.2011.105 PMID:21946442 Hagen EM et al. A 50-year follow-up of the incidence of traumatic spinal cord injuries in western Norway. Spinal Cord, 2010, 48:313-318. doi: http://dx.doi.org/10.1038/sc.2009.133 PMID:19823192 Rahimi-Movaghar V et al. Prevalence of spinal cord injury in Tehran, Iran. The Journal of Spinal Cord Medicine, 2009, 32:428431. PMID:19777865 Dahlberg A et al. Prevalence of spinal cord injury in Helsinki. Spinal Cord, 2005, 43:47-50. doi: http://dx.doi.org/10.1038/ sj.sc.3101616 PMID:15520842
39
Querschnittlähmung – Internationale Perspektiven
6. 7. 8. 9.
10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31.
O’Connor PJ. Prevalence of spinal cord injury in Australia. Spinal Cord, 2005, 43:42-46. doi: http://dx.doi.org/10.1038/ sj.sc.3101666 PMID:15326472 New PW et al. Prevalence of non-traumatic spinal cord injury in Victoria, Australia. Spinal Cord, 2013, 51:99-102. doi: http:// dx.doi.org/10.1038/sc.2012.61 PMID:22665222 Ronen J et al. Survival after nontraumatic spinal cord lesions in Israel. Archives of Physical Medicine and Rehabilitation, 2004, 85:1499-1502. doi: http://dx.doi.org/10.1016/j.apmr.2003.11.015 PMID:15375824 Tuğcu I et al. Epidemiologic data of the patients with spinal cord injury: seven years’ experience of a single center. Ulusal Travma Ve Acil Cerrahi Dergisi = Ulusal Travma Ve Acil Cerrahi Dergisi = Turkish Journal of Trauma & Emergency Surgery; TJTES, 2011, 17:533-538. doi: http://dx.doi.org/10.5505/tjtes.2011.95676 PMID:22290007 Costacurta MLG et al. Epidemiological profile of a pediatric population with acquired spinal cord injury from AACD: Sao Paulo/Brazil. Spinal Cord, 2010, 48:118-121. doi: http://dx.doi.org/10.1038/sc.2009.130 PMID:19806161 Garshick E et al. A prospective assessment of mortality in chronic spinal cord injury. Spinal Cord, 2005, 43:408-416. doi: http://dx.doi.org/10.1038/sj.sc.3101729 PMID:15711609 McCammon JR, Ethans K. Spinal cord injury in Manitoba: a provincial epidemiological study. The Journal of Spinal Cord Medicine, 2011, 34:6-10. doi: http://dx.doi.org/10.1179/107902610X12923394765733 PMID:21528620 Sabre L et al. High incidence of traumatic spinal cord injury in Estonia. Spinal Cord, 2012, 50:755-759. doi: http://dx.doi. org/10.1038/sc.2012.54 PMID:22565551 Pérez K et al. Incidence trends of traumatic spinal cord injury and traumatic brain injury in Spain, 2000–2009. Accident; Analysis and Prevention, 2012, 46:37-44. doi: http://dx.doi.org/10.1016/j.aap.2011.12.004 PMID:22310041 Albert T et al. Rehabilitation of spinal cord injury in France: a nationwide multicentre study of incidence and regional disparities. Spinal Cord, 2005, 43:357-365. doi: http://dx.doi.org/10.1038/sj.sc.3101717 PMID:15741980 O’Connor P. Incidence and patterns of spinal cord injury in Australia. Accident; Analysis and Prevention, 2002, 34:405-415. doi: http://dx.doi.org/10.1016/S0001-4575(01)00036-7 PMID:12067103 Ahoniemi E et al. Incidence of traumatic spinal cord injuries in Finland over a 30-year period. Spinal Cord, 2008, 46:781-784. doi: http://dx.doi.org/10.1038/sc.2008.53 PMID:18542095 O’Connor RJ, Murray PC. Review of spinal cord injuries in Ireland. Spinal Cord, 2006, 44:445-448. PMID:16304563 Quinones M et al. Traumatic spinal cord in Qatar: an epidemiological study. The Middle East Journal of Emergency Medicine, 2002, 2:1-5. van Asbeck FW, Post MW, Pangalila RF. An epidemiological description of spinal cord injuries in the Netherlands in 1994. Spinal Cord, 2000, 38:420-424. doi: http://dx.doi.org/10.1038/sj.sc.3101003 PMID:10962602 Li J et al. The epidemiological survey of acute traumatic spinal cord injury (ATSCI) of 2002 in Beijing municipality. Spinal Cord, 2011, 49:777-782. doi: http://dx.doi.org/10.1038/sc.2011.8 PMID:21383758 Ning GZ et al. Epidemiology of traumatic spinal cord injury in Tianjin, China. Spinal Cord, 2011, 49:386-390. doi: http:// dx.doi.org/10.1038/sc.2010.130 PMID:20921958 Lieutaud T, Ndiaye A, Laumon B, Chiron M. Spinal cord injuries sustained in road crashes are not on the decrease in France: A study based on epidemiological trends. Journal of Neurotrauma, 2012, 29:479-487. Augutis M, Levi R. Pediatric spinal cord injury in Sweden: incidence, etiology and outcome. Spinal Cord, 2003, 41:328-336. doi: http://dx.doi.org/10.1038/sj.sc.3101478 PMID:12746739 Puisto V et al. Incidence of spinal and spinal cord injuries and their surgical treatment in children and adolescents: a population-based study. Spine, 2010, 35:104-107. doi: http://dx.doi.org/10.1097/BRS.0b013e3181c64423 PMID:20042961 Divanoglou A, Levi R. Incidence of traumatic spinal cord injury in Thessaloniki, Greece and Stockholm, Sweden: a prospective population-based study. Spinal Cord, 2009, 47:796-801. doi: http://dx.doi.org/10.1038/sc.2009.28 PMID:19350044 DeVivo MJ, Vogel LC. Epidemiology of spinal cord injury in children and adolescents. The Journal of Spinal Cord Medicine, 2004, 27:S4-S10. PMID:15503696 Vogel LC, Betz RR, Mulcahey MJ. Spinal cord injuries in children and adolescents. Handbook of Clinical Neurology, 2012, 109:131-148. doi: http://dx.doi.org/10.1016/B978-0-444-52137-8.00008-5 PMID:23098710 Burke DA et al. Incidence rates and populations at risk for spinal cord injury: a regional study. Spinal Cord, 2001, 39:274-278. doi: http://dx.doi.org/10.1038/sj.sc.3101158 PMID:11438844 Lenehan B et al. The epidemiology of traumatic spinal cord injury in British Columbia, Canada. Spine, 2012, 37:321-329. doi: http://dx.doi.org/10.1097/BRS.0b013e31822e5ff8 PMID:22337075 Surkin J et al. Spinal cord injury in Mississippi: findings and evaluation, 1992–1994. Spine , 2000, 25:716-721. doi: http:// dx.doi.org/10.1097/00007632-200003150-00011 PMID:10752104
40
Kapitel 2
Querschnittlähmung – global betrachtet
32. Pickett GE et al. Epidemiology of traumatic spinal cord injury in Canada. Spine, 2006, 31:799-805. doi: http://dx.doi. org/10.1097/01.brs.0000207258.80129.03 PMID:16582854 33. Yang NP et al. The incidence and characterisation of hospitalised acute spinal trauma in Taiwan – a population-based study. Injury, 2008, 39:443-450. doi: http://dx.doi.org/10.1016/j.injury.2007.12.007 PMID:18321510 34. Middleton JW et al. Life expectancy after spinal cord injury: a 50-year study. Spinal Cord, 2012, 50:803-811. doi: http:// dx.doi.org/10.1038/sc.2012.55 PMID:22584284 35. National Spinal Cord Injury Statistical Center. Complete Public Version of the 2011 Annual Statistical Report for the Spinal Cord Injury Model System. Birmingham, Alabama, 2011. 36. Hagen EM, Eide GE, Elgen I. Traumatic spinal cord injury among children and adolescents: a cohort study in western Norway. Spinal Cord, 2011, 49:981-985. doi: http://dx.doi.org/10.1038/sc.2011.42 PMID:21556012 37. Vitale MG et al. Epidemiology of pediatric spinal cord injury in the United States, years 1997 and 2000. Journal of Pediatric Orthopedics, 2006, 26:745-749. doi: http://dx.doi.org/10.1097/01.bpo.0000235400.49536.83 PMID:17065938 38. Olasode BJ et al. Traumatic spinal cord injuries in Ile-Ife, Nigeria, and its environs. Tropical Doctor, 2006, 36:181-182. doi: http://dx.doi.org/10.1258/004947506777978136 PMID:16884634 39. Umaru H, Ahidjo A. Pattern of spinal cord injury in Maiduguri, North Eastern Nigeria. Nigerian Journal of Medicine, 2005, 14:276-278. PMID:16350696 40. Solagberu BA. Spinal cord injuries in Ilorin, Nigeria. West African Journal of Medicine, 2002, 21:230-232. PMID:12744575 41. Nwadinigwe CU, Iloabuchi TC, Nwabude IA. Traumatic spinal cord injuries (SCI): a study of 104 cases. Nigerian Journal of Medicine, 2004, 13:161-165. PMID:15293837 42. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:1134-1137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 43. Obalum DC et al. Profile of spinal injuries in Lagos, Nigeria. Spinal Cord, 2009, 47:134-137. doi: http://dx.doi.org/10.1038/ sc.2008.93 PMID:18679400 44. Fielingsdorf K, Dunn RN. Cervical spine injury outcome - a review of 101 cases treated in a tertiary referral unit. South African Medical Journal, 2007, 97:203-207. PMID:17440669 45. Gosselin RA, Coppotelli C. A follow-up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 46. Dryden DM et al. Utilization of health services following spinal cord injury: a 6-year follow-up study. Spinal Cord, 2004, 42:513-525. doi: http://dx.doi.org/10.1038/sj.sc.3101629 PMID:15249928 47. Pirouzmand F. Epidemiological trends of spine and spinal cord injuries in the largest Canadian adult trauma center from 1986 to 2006. Journal of Neurosurgery. Spine, 2010, 12:131-140. doi: http://dx.doi.org/10.3171/2009.9.SPINE0943 PMID:20121346 48. Dryden DM et al. The epidemiology of traumatic spinal cord injury in Alberta, Canada. The Canadian Journal of Neurological Sciences, 2003, 30:113-121. PMID:12774950 49. Neumann CR, Brasil AV, Albers F. Risk factors for mortality in traumatic cervical spinal cord injury: Brazilian data. The Journal of Trauma, 2009, 67:67-70. doi: http://dx.doi.org/10.1097/TA.0b013e3181aa63f3 PMID:19590310 50. Leal-Filho MB et al. Spinal cord injury: epidemiological study of 386 cases with emphasis on those patients admitted more than four hours after the trauma. Arquivos de Neuro-Psiquiatria, 2008, 66:365-368. doi: http://dx.doi.org/10.1590/S0004282X2008000300016 PMID:18641873 51. Brito LMO et al. Epidemiological evaluation of victims of spinal cord injury. Revista do Collégio Brasileiro de Cirugöes, 2011, 38:304-309. doi: http://dx.doi.org/10.1590/S0100-69912011000500004 PMID:22124640 52. Collazo Álvarez H et al. Traumatismo raquimedular toracico y lumbar. Rev Cubana Ortop Traumatol, 2002, 16:53-60. 53. Alshahri SS et al. Traumatic spinal cord injury in Saudi Arabia: an epidemiological estimate from Riyadh. Spinal Cord, 2012, 50:882-884. PMID:22777491 54. Raibulet T et al. Spinal cord injury patients in the physical medicine and rehabilitation hospital, Kuwait – a nine-year retrospective study. Kuwait Medical Journal, 2001, 33:211-215. 55. Rathore FA et al. Spinal cord injury management and rehabilitation: highlights and shortcomings from the 2005 earthquake in Pakistan. Archives of Physical Medicine and Rehabilitation, 2008, 89:579-585. doi: http://dx.doi.org/10.1016/j. apmr.2007.09.027 PMID:18295642 56. Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord, 2003, 41:303-309. doi: http:// dx.doi.org/10.1038/sj.sc.3101443 PMID:12714994 57. Lidal IB et al. Mortality after spinal cord injury in Norway. Journal of Rehabilitation Medicine, 2007, 39:145-151. doi: http:// dx.doi.org/10.2340/16501977-0017 PMID:17351697
41
Querschnittlähmung – Internationale Perspektiven
58. Post MWM et al. Duration and functional outcome of spinal cord injury rehabilitation in the Netherlands. Journal of Rehabilitation Research and Development, 2005, 42 Suppl I:75-85. doi: http://dx.doi.org/10.1682/JRRD.2004.10.0133 PMID:16195965 59. Scivoletto G et al. Traumatic and non-traumatic spinal cord lesions: an Italian comparison of neurological and functional outcomes. Spinal Cord, 2011, 49:391-396. doi: http://dx.doi.org/10.1038/sc.2010.85 PMID:20603629 60. Pagliacci MC et al. An Italian survey of traumatic spinal cord injury. The Gruppo Italiano Studio Epidemiologico Mielolesioni Study. Archives of Physical Medicine and Rehabilitation, 2003, 84:1266-1275. doi: http://dx.doi.org/10.1016/S00039993(03)00234-X PMID:13680560 61. Catz A et al. Survival following spinal cord injury in Israel. Spinal Cord, 2002, 40:595-598. doi: http://dx.doi.org/10.1038/ sj.sc.3101391 PMID:12411967 62. Cosar SN et al. Demographic characteristics after traumatic and non-traumatic spinal cord injury: a retrospective comparison study. Spinal Cord, 2010, 48:862-866. doi: http://dx.doi.org/10.1038/sc.2010.49 PMID:20440301 63. Gur A et al. Characteristics of traumatic spinal cord injuries in south-eastern Anatolia, Turkey: a comparative approach to 10 years’ experience. International Journal of Rehabilitation Research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue Internationale de Recherches de Readaptation, 2005, 28:57-62. doi: http://dx.doi.org/10.1097/00004356-20050300000008 PMID:15729098 64. Ones K et al. Comparison of functional results in non-traumatic and traumatic spinal cord injury. Disability and Rehabilitation, 2007, 29:1185-1191. doi: http://dx.doi.org/10.1080/09638280600902661 PMID:17653992 65. Karacan I et al. Traumatic spinal cord injuries in Turkey: a nation-wide epidemiological study. Spinal Cord, 2000, 38:697-701. doi: http://dx.doi.org/10.1038/sj.sc.3101064 PMID:11114778 66. Seguin P et al. Impact of age on mortality in patients with acute traumatic spinal cord injury requiring intensive care. Annales Francaises d’Anesthesie et de Reanimation, 2012, 31:196-202. doi: http://dx.doi.org/10.1016/j.annfar.2011.10.019 PMID:22204755 67. Van Den Berg M et al. Incidence of traumatic spinal cord injury in Aragon, Spain (1972–2008). Journal of Neurotrauma, 2011, 28:469-477. doi: http://dx.doi.org/10.1089/neu.2010.1608 PMID:21190391 68. Islam MS, Hafez MA, Akter M. Characterization of spinal cord lesion in patients attending a specialized rehabilitation center in Bangladesh. Spinal Cord, 2011, 49:783-786. doi: http://dx.doi.org/10.1038/sc.2011.36 PMID:21502957 69. Singh R et al. Traumatic spinal cord injuries in Haryana: An epidemiological study. Indian Journal of Community Medicine, 2003, 28:184-186. 70. Pandey V et al. Care of post-traumatic spinal cord injury patients in India: an analysis. Indian Journal of Orthopaedics, 2007, 41:295-299. doi: http://dx.doi.org/10.4103/0019-5413.36990 PMID:21139781 71. Chhabra HS, Arora M. Demographic profile of traumatic spinal cord injuries admitted at Indian Spinal Injuries Centre with special emphasis on mode of injury: a retrospective study. Spinal Cord, 2012, 50:745-754. doi: http://dx.doi.org/10.1038/ sc.2012.45 PMID:22584285 72. Kuptniratsaikul V. Epidemiology of spinal cord injuries: a study in the spinal unit, Siriraj Hospital, Thailand. Journal of the Medical Association of Thailand, 2003, 86:1116-1121. PMID:14971518 73. Lee BB et al. The global map for traumatic spinal cord injury epidemiology: update 2011, global incidence rate. Spinal Cord, 2013,In press PMID:23439068 74. Yang JY et al. Epidemiology of the spinal cord and cauda equine injury in Korea-multicenter study. J Korean Soc Spine Surg, 2011, 18:83-90. doi: http://dx.doi.org/10.4184/jkss.2011.18.3.83 75. Middleton PM. The pre-hospital epidemiology and management of spinal cord injuries in New South Wales: 2004–2008. Injury, 2012, 43:480-485. doi: http://dx.doi.org/10.1016/j.injury.2011.12.010 PMID:22244002 76. Chan SCC, Chan APS. Rehabilitation outcomes following traumatic spinal cord injury in a tertiary spinal cord injury centre: a comparison with an international standard. Spinal Cord, 2005, 43:489-498. doi: http://dx.doi.org/10.1038/ sj.sc.3101743 PMID:15824758 77. Wu JC et al. Effects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of Neurotrauma, 2012, 29:889-897. doi: http:// dx.doi.org/10.1089/neu.2011.1777 PMID:21510819 78. Wang HF et al. Epidemiological features of traumatic spinal cord injury in Anhui Province, China. Spinal Cord, 2013, 51:2022. doi: http://dx.doi.org/10.1038/sc.2012.92 PMID:22945750 79. Wu Q et al. Epidemiology of traumatic cervical spinal cord injury in Tianjin, China. Spinal Cord, 2012, 50:740-744. doi: http:// dx.doi.org/10.1038/sc.2012.42 PMID:22525311
42
Kapitel 2
Querschnittlähmung – global betrachtet
80. Feng HY et al. Epidemiological profile of 239 traumatic spinal cord injury cases over a period of 12 years in Tiajin, China. The Journal of Spinal Cord Medicine, 2011, 34:388-394. www.maneypublishing.com/journals/scm and www.ingentaconnect.com/content/maney/scm doi: http://dx.doi.org/10.1179/2045772311Y.0000000017 PMID:21903012 81. Lakhey S et al. Aetioepidemiological profile of spinal injury patients in eastern Nepal. Tropical Doctor, 2005, 35:231-233. doi: http://dx.doi.org/10.1258/004947505774938756 PMID:16354480 82. DeVivo MJ, Chen Y. Trends in new injuries prevalent cases, and aging with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:332-338. doi: http://dx.doi.org/10.1016/j.apmr.2010.08.031 PMID:21353817 83. Lee JH et al. Characteristics of pediatric-onset spinal cord injury. Pediatrics International, 2009, 51:254-257. doi: http:// dx.doi.org/10.1111/j.1442-200X.2008.02684.x PMID:19405927 84. Lhéritier K et al. Survival of tetraplegic spinal cord injured persons after the first admission of a rehabilitation center and prognosis factors: a multicentre study of 697 subjects in French centers. Revue d’Epidemiologie et de Sante Publique, 2001, 49:449-458. PMID:11845094 85. Celani MG et al. Spinal cord injury in Italy: a multicentre retrospective study. Archives of Physical Medicine and Rehabilitation, 2001, 82:589-596. doi: http://dx.doi.org/10.1053/apmr.2001.21948 PMID:11346833 86. Martin BW, Dykes E, Lecky FE. Patterns and risks in spinal trauma. Archives of Disease in Childhood, 2004, 89:860-865. doi: http://dx.doi.org/10.1136/adc.2003.029223 PMID:15321867 87. New PW, Cripps RA, Bonne Lee B. Global maps of non-traumatic spinal cord injury epidemiology: towards a living data repository. Spinal Cord, 2013, in print http://dx.doi.org/10.1038/sc.2012.165 doi: http://dx.doi.org/10.1038/sc.2012.165 PMID:23318556 88. New PW. Non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? Australian Health Review, 2006, 30:353-361. doi: http://dx.doi.org/10.1071/AH060353 PMID:16879094 89. New PW, Sundararajan V. Incidence of non-traumatic spinal cord injury in Victoria, Australia: a populationbased study and literature review. Spinal Cord, 2008, 46:406-411. doi: http://dx.doi.org/10.1038/sj.sc.3102152 PMID:18071356 90. van den Berg ME et al. Incidence of nontraumatic spinal cord injury: a Spanish cohort study (1972–2008). Archives of Physical Medicine and Rehabilitation, 2012, 93:325-331. doi: http://dx.doi.org/10.1016/j.apmr.2011.08.027 PMID:22289245 91. Centers for Disease Control and Prevention. Racial/ethnic differences in the birth prevalence of spina bifida – United States, 1995. MMWR Morb Mortal Wkly, 2009. Rep, 2005, 57:1409-1413. 92. Tarqui Mamani C et al. Incidencia de los defectos del tubo neural en el Instituto Nacional Materno Perinatal de Lima, Incidence of neural tube defects in the National Maternal-Perinatal Institute of Lima. Rev Chil Salud Pública, 2009, 13:82-89. 93. Msamati BC, Igbigbi PS, Chisi JE. The incidence of cleft lip, cleft palate, hydrocephalus and spina bifida at Queen Elizabeth Central Hospital, Blantyre, Malawi. The Central African Journal of Medicine, 2000, 46:292-296. PMID:12002118 94. Murshid WR. Spina bifida in Saudi Arabia: is consanguinity among the parents a risk factor? Pediatric Neurosurgery, 2000, 32:10-12. doi: http://dx.doi.org/10.1159/000028890 PMID:10765132 95. Onrat ST et al. Incidence of neural tube defects in Afyonkarahisar, Western Turkey. Genetics and Molecular Research, 2009, 8:154-161. doi: http://dx.doi.org/10.4238/vol8-1gmr552 PMID:19283682 96. Orioli IM et al. Effects of folic acid fortification on spina bifida prevalence in Brazil. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:831-835. doi: http://dx.doi.org/10.1002/bdra.20830 PMID:21630426 97. Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 98. Ahuka OL et al. Congenital malformations in the North-Eastern Democratic Republic of Congo during Civil War. East African Medical Journal, 2006, 83:95-99. doi: http://dx.doi.org/10.4314/eamj.v83i2.9395 PMID:16708881 99. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 100. Amini H et al. The Swedish Birth Defects Registry: ascertainment and incidence of spina bifida and cleft lip/palate. Acta Obstetricia et Gynecologica Scandinavica, 2009, 88:654-659. doi: http://dx.doi.org/10.1080/00016340902934696 PMID:19412801 101. Barboza Argüello ML, Umaña Solís LM. Impact of the fortification of food with folic acid on neural tube defects in Costa Rica. Revista Panamericana de Salud Pública, 2011, 30:1-6. PMID:22159644 102. Sípek A, Gregor V, Horacek J. Birth defects in the Czech Republic in the period 1961–2005 – mean incidences. Ceska Gynekologie, 2007, 72:185-191. PMID:17616072 103. Hernández-Herrera RJ, Alcala-Galvan LG, Flores-Santos R. Neural defect prevalence in 248,352 consecutive newborns. Revista Medica del Instituto Mexicano del Seguro Social, 2008, 46:201-204. PMID:19133193
43
Querschnittlähmung – Internationale Perspektiven
104. Boyd PA et al. Monitoring the prenatal detection of structural fetal congenital anomalies in England and Wales: registerbased study. Journal of Medical Screening, 2011, 18:2-7. doi: http://dx.doi.org/10.1258/jms.2011.010139 PMID:21536809 105. De Wals PF et al. Reduction in neural-tube defects after folic acid fortification in Canada. The New England Journal of Medicine, 2007, 357:135-142. doi: http://dx.doi.org/10.1056/NEJMoa067103 PMID:17625125 106. López-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http:// dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 107. Njamnshi AK et al. Neural tube defects are rare among black Americans but not in sub-Saharan black Africans: the case of Yaounde – Cameroon. Journal of the Neurological Sciences, 2008, 270:13-17. doi: http://dx.doi.org/10.1016/j. jns.2008.01.010 PMID:18295800 108. Owen TJ, Halliday JL, Sone CA. Neural tube defects in Victoria, Australia: potential contributing factors and public health implications. Australian and New Zealand Journal of Public Health, 2000, 24:584-589. doi: http://dx.doi.org/10.1111/j.1467842X.2000.tb00521.x PMID:11215005 109. Sayed AR et al. Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2008, 82:211-216. doi: http://dx.doi. org/10.1002/bdra.20442 PMID:18338391 110. Golalipour MJ et al. Epidemiology of neural tube defects in northern Iran, 1998–2003. Eastern Mediterranean Health Journal, 2007, 13:560-566. PMID:17687828 111. Farhud D, Hadavi V, Sadighi H. Epidemiology of neural tube defects in the world and Iran. Iranian Journal of Public Health, 2000, 29:83-90. 112. García López E et al. Prevalence of neural tube defects in Asturias (Spain): impact of prenatal diagnosis. Gaceta Sanitaria, 2009, 23:506-511. doi: http://dx.doi.org/10.1016/j.gaceta.2009.01.011 PMID:19406531 113. Sanchis Calvo A, Martinez-Frias M. Clinical epidemiological study of neural tube defects classified according to the five sites of closure. Anales Espanoles de Pediatria, 2001, 54:165-173. doi: http://dx.doi.org/10.1016/S1695-4033(01)78673-0 PMID:11181213 114. Liu J et al. Prevalence of neural tube defects in economically and socially deprived area of China. Child’s Nervous System, 2007, 23:1119-1124. doi: http://dx.doi.org/10.1007/s00381-007-0344-3 PMID:17450368 115. Pei LJ et al. The epidemiology of neural tube defects in high-prevalence and low-prevalence areas of China. Zhonghua Liu Xing Bing Xue Za Zhi, 2003, 24:465-470. PMID:12848911 116. Li Z et al. Prevalence of major external birth defects in high and low risk areas in China, 2003. Zhonghua Liu Xing Bing Xue Za Zhi, 2005, 26:252-257. PMID:15941530 117. Bower C, D’Antoine H, Stanley FJ. Neural tube defects in Australia: trends in encephaloceles and other neural tube defects before and after promotion of folic acid supplementation and voluntary food fortification. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2009, 85:269-273. doi: http://dx.doi.org/10.1002/bdra.20536 PMID:19180646 118. Li Z et al. Extremely high prevalence of neural tube defects in a 4-county area in Shanxi Province, China. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2006, 76:237-240. doi: http://dx.doi.org/10.1002/bdra.20248 PMID:16575897 119. Nikkilä A, Rydhstrom H, Kallen B. The incidence of spina bifida in Sweden 1973–2003: the effect of prenatal diagnosis. European Journal of Public Health, 2006, 16:660-662. doi: http://dx.doi.org/10.1093/eurpub/ckl053 PMID:16672253 120. Petrova JG, Vaktskjold A. The incidence of neural tube defects in Norway and the Arkhangelskaja Oblast in Russia and the association with maternal age. Acta Obstetricia et Gynecologica Scandinavica, 2009, 88:667-672. doi: http://dx.doi. org/10.1080/00016340902898008 PMID:19353336 121. Rankin J et al. The changing prevalence of neural tube defects: a population-based study in the north of England, 1984–96. Northern Congenital Abnormality Survey Steering Group. Paediatric and Perinatal Epidemiology, 2000, 14:104110. doi: http://dx.doi.org/10.1046/j.1365-3016.2000.00246.x PMID:10791652 122. Catz A. Recovery of neurologic function following nontraumatic spinal cord lesions in Israel. Spine (Phila Pa 1976). 2004 Oct 15;29(20):2278–2282; discussion 2283. 123. Werhagen L, Hultling C, Molander C. The prevalence of neuropathic pain after non-traumatic spinal cord lesion. Spinal Cord, 2007, 45:609-615. doi: http://dx.doi.org/10.1038/sj.sc.3102000 PMID:17160075 124. Osterthun R, Post MWM, van Asbeck FWA. Characteristics, length of stay and functional outcome of patients with spinal cord injury in Dutch and Flemish rehabilitation centers. Spinal Cord, 2009, 47:339-344. doi: http://dx.doi.org/10.1038/ sc.2008.127 PMID:19002154 125. Gupta A et al. Non-traumatic spinal cord lesions: epidemiology, complications, neurological and functional outcome of rehabilitation. Spinal Cord, 2009, 47:307-311. doi: http://dx.doi.org/10.1038/sc.2008.123 PMID:18936767
44
Kapitel 2
Querschnittlähmung – global betrachtet
126. Quintana-Gonzales A et al. Nontraumatic spinal cord injury: etiology, demography and clinics. Rev Peru Med Exp Salud Publica, 2011, 28:633-638. PMID:22241260 127. Ahoniemi E, Pohjolainen T, Kautiainen H. Survival after spinal cord injury in Finland. Journal of Rehabilitation Medicine, 2011, 43:481-485. doi: http://dx.doi.org/10.2340/16501977-0812 PMID:21533327 128. Sabre L et al. Traumatic spinal cord injury in two European countries: why the differences? European Journal of Neurology, 2013, 20:293-299. doi: http://dx.doi.org/10.1111/j.1468-1331.2012.03845.x PMID:22891855 129. O’Connor PJ. Survival after spinal cord injury in Australia. Archives of Physical Medicine and Rehabilitation, 2005, 86:37-47. PMID:15640987 130. Hagen EM et al. Traumatic spinal cord injuries – incidence, mechanisms and course. Tidsskrift for Den Norske Laegeforening, 2012, 132:831-837. doi: http://dx.doi.org/10.4045/tidsskr.10.0859 PMID:22511097 131. Strauss DJ et al. Trends in life expectancy after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2006, 87:1079-1085. doi: http://dx.doi.org/10.1016/j.apmr.2006.04.022 PMID:16876553 132. Saunders LL et al. Traumatic spinal cord injury mortality, 1981–1998. The Journal of Trauma, 2009, 66:184-190. doi: http:// dx.doi.org/10.1097/TA.0b013e31815644e5 PMID:19131823 133. Soden RJ et al. Causes of death after spinal cord injury. Spinal Cord, 2000, 38:604-610. doi: http://dx.doi.org/10.1038/ sj.sc.3101080 PMID:11093321 134. National Spinal Cord Injury Statistical Center. Birmingham, Alabama Spinal Cord Injury Facts and Figures at a Glance, February 2012 (https://www.nscisc.uab.edu/PublicDocuments/fact_figures_docs/Facts%202012%20Feb%20Final.pdf, accessed 9 January 2013). 135. Hagen EM et al. Mortality after traumatic spinal cord injury: 50 years of follow-up. Journal of Neurology, Neurosurgery, and Psychiatry, 2010, 81:368-373. doi: http://dx.doi.org/10.1136/jnnp.2009.178798 PMID:19726408 136. Rathore MFA. 2013. Spinal Cord Injuries in the Developing World. In: JH Stone, M Blouin, eds. International encyclopedia of rehabilitation. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/141/ 137. Couris CM et al. Characteristics of adults with incident traumatic spinal cord injury in Ontario, Canada. Spinal Cord, 2010, 48:39-44. doi: http://dx.doi.org/10.1038/sc.2009.77 PMID:19546873 138. Fassett DR et al. Mortality rates in geriatric patients with spinal cord injuries. Journal of Neurosurgery, 2007, 7:277-281. PMID:17877260 139. Demetriades D et al. The effect of trauma center designation and trauma volume on outcome in specific severe injuries. Annals of Surgery, 2005, 242:512-517. PMID:16192811 140. Harvey C et al. New estimates of the direct costs of traumatic spinal cord injuries: results of a nationwide survey. Paraplegia, 1992, 30:834-850. doi: http://dx.doi.org/10.1038/sc.1992.160 PMID:1287537 141. Johnson RL, Brooks CA, Whiteneck GG. Cost of traumatic spinal cord injury in a population-based registry. Spinal Cord, 1996, 34:470-480. doi: http://dx.doi.org/10.1038/sc.1996.81 PMID:8856854 142. Bötel U et al. The cost of ventilator-dependent spinal cord injuries-patients in the hospital and at home. Spinal Cord, 1997, 35:40-42. doi: http://dx.doi.org/10.1038/sj.sc.3100345 PMID:9025219 143. DeVivo MJ. Causes and costs of spinal cord injury in the United States. Spinal Cord, 1997, 35:809-813. doi: http://dx.doi. org/10.1038/sj.sc.3100501 PMID:9429259 144. Dryden DM et al. Direct health care costs after traumatic spinal cord injury. The Journal of Trauma, 2005, 59:443-449. PMID:16294090 145. Mak KS et al. Incidence and treatment patterns in hospitalizations for malignant spinal cord compression in the United States, 1998–2006. International Journal of Radiation Oncology, Biology, Physics, 2011, 80:824-831. doi: http://dx.doi. org/10.1016/j.ijrobp.2010.03.022 PMID:20630663 146. New PW, Jackson T. The costs and adverse events associated with hospitalization of patients with spinal cord injury in Victoria, Australia. Spine, 2010, 35:796-802. PMID:20228702 147. Greenwald BD et al. Gender-related differences in acute rehabilitation lengths of stay, charges, and functional outcomes for a matched sample with spinal cord injury: a multicenter investigation. Archives of Physical Medicine and Rehabilitation, 2001, 82:1181-1187. doi: http://dx.doi.org/10.1053/apmr.2001.24891 PMID:11552188 148. St. Andre JR et al. A comparison of costs and health care utilization for veterans with traumatic and nontraumatic spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:27-42. doi: http://dx.doi.org/10.1310/sci1604-27 149. Sundance PD et al. Systematic care management: clinical and economic analysis of a national sample of patients with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2004, 10:17-34. doi: http://dx.doi. org/10.1310/2E3M-X01K-786H-V8FC
45
Querschnittlähmung – Internationale Perspektiven
150. Baaj AA et al. Health care burden of cervical spine fractures in the United States: analysis of a nationwide database over a 10-year period. Journal of Neurosurgery. Spine, 2010, 13:61-66. doi: http://dx.doi.org/10.3171/2010.3.SPINE09530 PMID:20594019 151. DeVivo MJ et al. Costs of care following spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:1-9. doi: http://dx.doi.org/10.1310/sci1604-1 152. Cao Y et al. Lifetime direct costs after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:10-16. doi: http://dx.doi.org/10.1310/sci1604-10 153. National Spinal Cord Injury Statistical Center. Birmingham, Alabama Spinal Cord Injury Facts and Figures at a Glance, February 2013 (https://www.nscisc.uab.edu/PublicDocuments/fact_figures_docs/Facts%202013.pdf, accessed 23 Mai 2013). Based on data from Economic Impact of SCI published in Topics in Spinal Cord Injury Rehabilitation, 2011, 16(4). 154. Access Economics for the Victorian Neurotrauma Initiative. The economic cost of spinal cord injury and traumatic brain injury in Australia. 2009 (http://www.tac.vic.gov.au/about-the-tac/our-organisation/research/tac-neurotraumaresearch/vni/the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia. pdf?bcsi_scan_c7a381ba8bd8a412=Ll1KKoXsl2UO97L0ZcjjMUATHXYjAAAAPRI4Bw==&bcsi_scan_filename=the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia.pdf, accessed 9 January 2013) Based on Transport Accident Commission (TAC) data on the costs for healthcare, long term care, equipment and modifications, administration and compensation to families for TBI and SCI patients in Victoria for pay years 2004–2008. 155. Cassell CH et al. Health care expenditures among children with and those without spina bifida enrolled in Medicaid in North Carolina. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:1019-1027. doi: http://dx.doi. org/10.1002/bdra.22864 PMID:22021073 156. Bowkett B, Deverall E. Paediatric spina bifida inpatient treatment at Wellington Regional Hospital: a cost analysis of sequential patients. The New Zealand Medical Journal, 2012, 125:13-18. PMID:22426607 157. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 158. Munce SE et al. Direct costs of adult traumatic spinal cord injury in Ontario. Spinal Cord, 2013, 51:64-69. doi: http://dx.doi. org/10.1038/sc.2012.81 PMID:22801189 159. Haeusler JM et al. Pilot study on the comprehensive economic costs of major trauma: consequential costs are well in excess of medical costs. The Journal of Trauma, 2006, 61:723-731. PMID:16967014 160. Noonan VK et al. The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry. Spinal Cord, 2012, 50:2227. doi: http://dx.doi.org/10.1038/sc.2011.109 PMID:22042297 161. Rick Hansen Institute Spinal Cord Injury Registry. web site (http://rickhansenregistry.org, accessed 17 March 2013). 162. O’Connor PJ. Development and utilisation of the Australian spinal cord injury register. Spinal Cord, 2000, 38:597-603. doi: http://dx.doi.org/10.1038/sj.sc.3101048 PMID:11093320 163. Stover SL et al. History, implementation, and current status of the national spinal cord injury database. Archives of Physical Medicine and Rehabilitation, 1999, 80:1365-1371. doi: http://dx.doi.org/10.1016/S0003-9993(99)90246-0 PMID:10569429 164. DeVivo MJ, Go BK, Jackson AB. Overview of the National Spinal Cord Injury Statistical Center database. The Journal of Spinal Cord Medicine, 2002, 25:335-338. PMID:12482178 165. World Health Organization. International Classification of Diseases, 2010, web site (http://www.who.int/classifications/icd/ en/, accessed 18 March 2012). 166. OECD, World Health Organization, Eurostat. A system of health accounts, OECD Publishing, 2011 (http://www.oecd-ilibrary. org/social-issues-migration-health/a-system-of-health-accounts_9789264116016-en, accessed 17 May 2013). 167. Marino RJ et al. International standards for neurological classification of spinal cord injury. The Journal of Spinal Cord Medicine, 2003, 26 Suppl 1:S50-S56. PMID:16296564 168. Waring WP et al. 2009 review and revisions of the International Standards for the Neurological Classification of Spinal Cord Injury. The Journal of Spinal Cord Medicine, 2010, 33:346-352. PMID:21061894 169. Kirshblum SC et al. International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 2011, 34:535-546. doi: http://dx.doi.org/10.1179/204577211X13207446293695 PMID:22330108 170. Kirshblum SC et al. Reference for the 2011 revision of the International Standards for Neurological Classification of Spinal Cord Injury. The Journal of Spinal Cord Medicine, 2011, 34:547-554. doi: http://dx.doi.org/10.1179/1079026 11X13186000420242 PMID:22330109
46
Kapitel 2
Querschnittlähmung – global betrachtet
171. Biering-Sørensen F et al. International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi. org/10.1038/sj.sc.3101930 PMID:16955072 172. International SCI Data Sets. International Spinal Cord Society (ISCoS) (http://www.iscos.org.uk/international-sci-data-sets, accessed 22 May 2013). 173. DeVivo MJ. International Spinal Cord Injuury Core Data Set. Spinal Cord, 2006, 44:535-540. 174. New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord, advance online publication, January 2013. doi: 10.1038/sc.2012.160. doi: http://dx.doi.org/10.1038/sc.2012.160 175. DeVivo MJ et al. Standardization of data analysis and reporting of results from the International Spinal Cord Injury Core Data Set. Spinal Cord, 2011, 49:596-599. doi: http://dx.doi.org/10.1038/sc.2010.172 PMID:21135863 176. Global Mapping of Spinal Cord Injury (SCI) Epidemiology. Towards a living data repository. The International Spinal Cord Society, web site (http://www.iscos.org.uk/sci-global-mapping, accessed 4 June, 2013). 177. Biering-Sørensen F et al. Developing core sets for persons with spinal cord injuries based on the International Classification of Functioning, Disability and Health as a way to specify functioning. Spinal Cord, 2006, 44:541-546. doi: http://dx.doi. org/10.1038/sj.sc.3101918 PMID:16955074 178. Cieza A et al. ICF Core Sets for individuals with spinal cord injury in the long-term context. Spinal Cord, 2010, 48:305-312. doi: http://dx.doi.org/10.1038/sc.2009.183 PMID:20065984 179. Kirchberger I et al. ICF Core Sets for individuals with spinal cord injury in the early post-acute context. Spinal Cord, 2010, 48:297-304. doi: http://dx.doi.org/10.1038/sc.2009.128 PMID:19786973 180. Gale Encyclopedia of Medicine. 4th ed. Farmington Hills, Michigan: Gale Cengage Learning Inc; 2011. 181. Centers for Disease Control and Prevention. Case definition of spinal cord injury. 1990 (http://wwwn.cdc.gov/nndss/script/ casedef.aspx?CondYrID=854&DatePub=1/1/1990%2012:00:00%20AM, accessed 17.5.2013). 182. Ackery A, Tator C, Krassioukov A. A global perspective on spinal cord injury epidemiology. Journal of Neurotrauma, 2004, 21:1355-1370. doi: http://dx.doi.org/10.1089/neu.2004.21.1355 PMID:15672627 183. Draulans N et al. Etiology of spinal cord injuries in sub-Saharan Africa. Spinal Cord, 2011, 49:1148-1154. doi: http://dx.doi. org/10.1038/sc.2011.93 PMID:21987062 184. Solagberu BA et al. Pre-hospital care in Nigeria: a country without emergency medical services. Nigerian Journal of Clinical Practice, 2009, 12:29-33. PMID:19562917 185. Afuwape OO et al. Preventable trauma deaths in Ibadan: a comparison of revised trauma score and panel review. West African Journal of Medicine, 2011, 30:19-23. doi: http://dx.doi.org/10.4314/wajm.v30i1.69879 PMID:21863584 186. Thanni LO, Kehinde OA. Trauma at a Nigerian teaching hospital: pattern and documentation of presentation. African Health Sciences, 2006, 6:104-107. PMID:16916301 187. Noonan VK et al. The validity of administrative data to classify patients with spinal column and cord injuries. Journal of Neurotrauma, 2013, 30:173-180. doi: http://dx.doi.org/10.1089/neu.2012.2441 PMID:23002989
47
Kapitel 3 Prävention von Querschnittlähmung
„Ich bin 52 Jahre alt, männlich und leide an einer inkompletten aber folgenschweren Querschnittlähmung (C4). Die Querschnittlähmung erlitt ich 1973 bei einem Verkehrsunfall; ich war damals 16 Jahre alt. Den Verkehrsunfall habe ich selbst verursacht; ich fuhr zu schnell, ohne Führerschein und war angetrunken. Ich kann meine Arme ein wenig bewegen und meine Hände für einfache Tätigkeiten verwenden. Ich kann stehen, aber nicht gehen. Ich kann nicht auf der Computertastatur tippen, kann jedoch ein Spracherkennungsprogramm verwenden, um auf dem Computer zu schreiben. Um mich fortzubewegen, verwende ich einen Rollstuhl. Um meinen persönlichen Bedürfnissen nachzukommen, habe ich rund um die Uhr persönliche Unterstützung.“ (Stig, Dänemark) „Zwischen den Jahreszeiten, in denen Reis angebaut wird, arbeitete ich als Bauarbeiter in Hanoi, um zusätzlich Geld zu verdienen - sowohl um sicherzustellen, dass ich eine gute Vorratsmenge an Samen für die Reisanbausaison kaufen konnte, als auch um für die Bedürfnisse meiner Kinder aufzukommen damit sie die Schule besuchen können, und um ihnen eine gute Zukunft bieten zu können. Eines Tages brach wortwortlich eine Welt fur mich zusammen, als ich die Kontrolle verlor und auf einer nassen Holzplanke ausrutschte wahrend ich eine Ladung Backsteine trug.“ (anonym, Vietnam) „Ich fiel 1976 vom Dach meines Hauses und erlitt eine Querschnittlähmung (C5–C6). Als Folge kann ich meine Beine nicht mehr bewegen und meine Finger und Arme kann ich nur sehr eingeschränkt gebrauchen.“ (David, USA) „1998 erlitt ich eine Schusswunde, die eine Querschnittlähmung unterhalb von Th6–7 verursachte.“ (Robert, Uganda) „Ich erlitt die Verletzung im Oktober 1997 als ich in Noosa Heads in Queensland, Australien auf dem Bodyboard surfte. Als Folge meiner Querschnittlähmung (C4–5) kann ich lediglich meinen Kopf bewegen, verfüge aber über absolute keine Funktionalität in den Gliedmaßen. Diese neue und schwierige Situation brachte auf einmal viele Herausforderungen mit sich, die interessante Fähigkeiten zur Problemlösung erforderlich machten, um eine bestmögliche Selbständigkeit zu erreichen, und um die Belastung für andere so gering wie möglich zu halten.“ (Brad, Australien) „Ich bin ein Tetraplegiker und erlitt 1974, vor 35 Jahren, eine Querschnittlähmung während ich Rugby spielte im Alter von 15½ Jahren.“ (Richard, Neuseeland)
3
Prävention von Querschnittlähmung Wenn Querschnittlähmung (QSL) die Folge eines traumatischen Ereignisses wie etwa eines Straßenverkehrsunfalls oder ein Sturzes ist, ndet o mals der Übergang von einer guten Gesundheit zu einer dauerha en Behinderung innerhalb weniger Sekunden statt. Ob nun die Ursache traumatischen oder nicht-traumatischen Ursprungs ist – es ist gut zu wissen, dass ein Großteil dieser Gesundheitseinschränkungen vermeidbar ist. Die primäre Prävention beinhaltet Maßnahmen zur Vermeidung oder Beseitigung der Ursache einer QSL in Bezug auf eine einzelne Person oder eine Bevölkerungsgruppe bevor das Problem entstehen kann, z. B. Maßnahmen zur Reduzierung von Straßenverkehrsunfällen. Die sekundäre Prävention kommt ins Spiel, wenn eine QSL eingetreten ist. Ziel ist es, eine frühe Diagnose und Behandlung zu ermöglichen und Behinderung einzuschränken (vgl. Kapitel 4: Bedürfnisse im Bereich der Gesundheitsversorgung und Rehabilitation). Frühzeit zu erkennen, dass möglicherweise eine QSL durch eine Verletzung vorliegt sowie ein fachgerechter Transport zu einer geeigneten Einrichtung und Zugang zur Erstrehabilitation sind Teil der sekundären Prävention. Die tertiäre Prävention konzentriert sich auf die Rehabilitation nach der QSL und auf umweltbezogene Maßnahmen zur Reduzierung von Komplikationen und zur Förderung einer erfolgreichen Eingliederung des Betro enen in das Familienleben und in das persönliche Umfeld (1). Alle Formen der Prävention sind notwendig. Menschen mit Behinderungen betrachten den Zugang zu Gesundheit, kombiniert mit Menschenrechten und sozialer Inklusion, als Ausweg aus der schwierigen Lage, in der sie sich durch die gesundheitlichen Probleme in Zusammenhang mit der Behinderung be nden (2). Die Menschenrechtsprinzipien Respekt und Würde verlangen, wie von der UN-Konvention über die Rechte von Menschen mit Behinderungen (BRK) (3) hervorgehoben, dass Präventionsstrategien auf eine Art und Weise verfolgt werden, die Menschen mit einer QSL nicht diskriminiert (4). In diesem Kapitel werden primäre Präventionsinterventionen erörtert, die QSL reduzieren können, vorrangig QSL traumatischen Ursprungs. Dieses Kapitel beleuchtet insbesondere Interventionen, die sich als wirksam erwiesen haben und weist auf solche hin, die genauer untersucht werden müssen. Die sekundäre und tertiäre Prävention werden in den nachfolgenden Kapiteln behandelt.
51
Querschnittlähmung – Internationale Perspektiven
auf Länder mit mittlerem und niedrigen Nationaleinkommen – unter Berücksichtigung von unterschiedlichen Straßenumgebungen, Fahrzeugen, Fahrzeuggebrauch und individueller Ressourcenknappheit – ist essenziell, um dem für die Zukun projizierten Anstieg unfallverursachter Todesfälle und Verletzungen entgegenzuwirken (15).
Zwar sollten individuelle QSL-spezi sche Interventionen implementiert werden (16, 17) (vgl. Kasten 3.1), jedoch besteht der größte Nutzen in der Implementierung eines Systemansatzes – mit Fokus auf die Straßenumgebung als Gesamtes (z.B. Flächennutzung, Zugang zu und für Gemeinden, Nähe zu Wohngebieten und anderen Einrichtungen) – unter Berücksichtigung der Bedürfnisse und Möglichkeiten aller Straßenbenutzer. Ein ebenso großer Nutzen besteht in der Entwicklung und Vermarktung von Fahrzeugen,
Spezielle Interventionen zur Reduzierung von Querschnittlähmungen bei Fahrzeugnutzern
die nicht nur ihren Insassen mehr Schutz bieten, sondern bei denen auch das Wohlbe nden der Verkehrsteilnehmer berücksichtigt wird, die im Fall eines Zusammenstoßes mit dem Fahrzeug in Kontakt kommen (9, 12). Tabelle 3.2 liefert eine Zusammenfassung von Interventionen bei Straßenverkehrsunfällen. Während diese Interventionen hauptsächlich Fahrzeuge betre en, sind verkehrsberuhigende Maßnahmen ein typisches Beispiel für Veränderungen der Umwelt (z. B. Kreisverkehre, Rüttelstreifen, Fahrstreifentrennung etc.), die potenziell alle Arten von Straßenverkehrsunfällen in Städten reduzieren können.
Schutz für andere Verkehrsteilnehmer
Die Herausforderungen in der Prävention von QSL und anderen Verletzungen gefährdeter anderer Verkehrsteilnehmer (Motorradfahrer, Fußgänger und Fahrradfahrer) sind komplex und hängen von Verhaltensinterventionen ab, die zur Reduzierung von Unfallrisiken und zur Scha ung sicherer Straßenumgebungen
Kasten 3.1. Unfälle mit Fahrzeugüberschlägen erhöhen das Risiko einer Querschnittlähmung Matilda war an einem Sonntagmorgen nach einer Party zum 30. Geburtstag auf dem Hof eines Bekannten alleine im Auto ihres Freundes unterwegs . Sie hatte in den frühen Morgenstunden Alkohol getrunken und nur wenig geschlafen. Das Auto kam auf den Seitenstreifen ab, der schlecht gebaut und abschüssig war. Innerhalb eines Bruchteils einer Sekunde geriet das Fahrzeug außer Kontrolle. Die Innenseite des Vorderrads verkantete sich, sodass das Auto sich überschlug. Der Unfall war gravierend, genau wie Matildas Verletzungen –Genickbruch und Dislokation und als Folge Tetraplegie. Matildas Unfall ist ein typisches Beispiel. Unfälle, bei denen sich das Auto überschlägt stehen im Zusammenhang mit schweren Verletzungen. Der Kopf eines Insassen kann mit dem Fahrzeugdach zusammenprallen, wenn sich das Auto überschlägt und der Insasse kopfüber gedreht und das gesamte Körpergewicht auf das Genick gedrückt wird (16, 18, 19). Die daraus resultierende Axialkompression steht in Zusammenhang mit der Fraktur und Dislokation der Halswirbelsäule. Unfälle mit Fahrzeugüberschlägen sind verhältnismäßig häufig, besonders in ländlichen Gebieten, in denen hohe Geschwindigkeiten und schlecht instandgehaltene Fahrzeuge und die Infrastruktur Risikofaktoren darstellen. Maßnahmen zur Reduzierung von Inzidenz und Konsequenzen von Unfällen mit Fahrzeugüberschlägen beinhalten:
■ regulatorische Ansätze zur Einführung von Überschlag-Sicherheitsstandards für Fahrzeuge (20); ■ die Verwendung von elektronischen Stabilitätskontrollen bei Fahrzeugen, d. h. Computertechnologie, die die Fahrzeugstabilität durch Erkennen und Reduzieren des Schleuderns verbessert ( 21, 22);
■ die Installation von Barrieresystemen und seitlichen Straßenbegrenzungen für sicherere Straßen (23); ■ Maßnahmen zur Verhinderung von Geschwindigkeitsüberschreitungen, Übermüdung und Fahren unter Alkoholeinfluss.
Fortsetzung auf der nächsten Seite… 54
Querschnittlähmung – Internationale Perspektiven
die Motorisierung schnell zunimmt während die Haupttransportmittel jedoch immer noch das Gehen zu Fuß, mit dem Fahrrad fahren oder das Fahren mit unsicheren Fahrzeugen wie überfüllten Pick-up Trucks ohne Rückhaltesysteme sind (9). Dieses höhere Verkehrsvolumen bedeutet für die Verkehrsteilnehmer, dass sie länger einem erhöhten Unfallrisiko ausgesetzt sind; dieses Problem wird noch verstärkt, wenn die Entwicklung der Infrastruktur nur langsam voran geht. In eben diesem Kontext bieten Technologietransfer und die Einführung von „Safe System“-Interventionen beträchtliche Möglichkeiten bei der Reduzierung von verkehrsbedingter Mortalität, Morbidität und Behinderung (44).
Stürze Zusätzlich zu Verkehrsunfällen stellen Stürze ebenfalls eine beträchtliche Ursache von QSL dar. Es wurden die folgenden vier Muster identi ziert, die zu QSL führen: ■ Stürze auf gleicher Höhe (z. B. beim Sport, Stolpern über einen Teppich, beim Tragen einer schweren Last [vgl. Kasten 3.2]); ■ Stürze aus weniger als einem Meter Höhe (z. B. Stufen hinunterfallen, Sturz von einer niedrigen Mauer); ■ Stürze aus einem Meter Höhe oder mehr (z. B. von einem Gebäude oder einem Pferd);
Kasten 3.2. Stürze beim Tragen von Lasten auf dem Kopf In vielen Ländern mit niedrigem Nationaleinkommen werden Lasten auf dem Kopf getragen. Träger transportieren regelmäßig Lasten von bis zu 100kg auf dem Kopf. Diese Methode wurde in Bangladesch (45 ), Ghana (46 ) und Sierra Leone (47 ) beobachtet. In Bangladesch sind Menschen, die eine QSL ab der Halswirbelsäule durch Stürze beim Tragen einer schweren Last auf dem Kopf erleiden – meistens Agrarerzeugnisse, Düngemittel oder Reis – oft arme junge Männer, die als Träger arbeiten sowie Bauern. Das Risiko einer QSL durch einen Sturz während des Tragens einer schweren Last auf dem Kopf ist beträchtlich höher für neue und ungelernte Träger undKinder, und wenn die Traglast 50kg übersteigt (45 ). Da die Träger ihren Kopf immerzu aufrecht halten müssen, um die Last im Gleichgewicht zu halten, ist es für sie sehr schwierig, die Beschaffenheit des Weges oder der Straße zu sehen, auf der sie gehen. Unebene oder glatte Oberflächen verursachen häufig Stürze. Sechzig Prozent der Fälle geschehen in ländlichen Gegenden, auf Agrarland oder matschigen Wegen. Der Stürzende verliert das Gleichgewicht und die Kombination aus der Wucht des Sturzes sowie der Wucht der schweren Last resultieren in einen besonders schweren Sturz. Die betroffene Person ist außerstande, die schwere Last vom Kopf wegzustoßen oder die anormale Nackenbewegung zu kontrollieren, die durch das Gewicht und die Wucht der Last entstehen. Dies verwandelt einen energiearmen Sturz in einen energiereichen Sturz, mit der Folge einer Querschnittlähmung. Regierungen tendieren dazu, das Ausmaß dieses Problems zu übersehen, da diese Verletzungen häufig in ländlichen Gegenden stattfinden und arme Menschen betreffen, die keinerlei Einfluss haben. Die Arbeitslosigkeit ist oft hoch und verletzte Arbeiter werden schnell ersetzt. Die Folgen dieser Verletzungen für die betroffene Person und deren Familie sind jedoch unermesslich. Diese Unfälle können durch die Einführung von alternativen Methoden der Lastenbeförderung verhindert werden. Mit Hilfe von Schubkarren, die strapazierfähig und sicherer sind, können schwerere Lasten transportiert werden. Zur Einführung des Schubkarrens als Alternative sind staatliche Vorschriften und Unterstützung notwendig sowie möglicherweise Subventionen, um Schubkarren zu einer attraktiven Alternative für Arbeitgeber zu machen. Der Prozess der Identifizierung von Situationen, die Möglichkeiten für Verletzungsprävention im beruflichen Umfeld aufweisen, beinhaltet eine sorgfältige Analyse sowohl der Mechanik, die den Stürzen zu Grunde liegt, als auch der Abfolge von Ereignissen, die letztendlich zu Verletzungen führen.
56
Querschnittlähmung – Internationale Perspektiven
weltweit an durch Gewalt verursachten Querschnittlähmungen (38% aller Fälle von QSL) (52). Messer und andere scharfe Gegenstände können ebenfalls für die Zufügung von tiefergehenden Verletzungen verwendet werden mit QSL als Folge (53). Verletzungen der Wirbelsäule durch Bombenexplosionen wurden ebenfalls verzeichnet (54). Ein kleiner Anteil von Stürzen aus großer Höhe ist auf Suizidintention zurückzuführen. Es gibt wissenscha liche Beweise, die wie angenommen bestätigen, dass Länder mit restriktiven Rechtsvorschri en in Bezug auf Schusswa en und einer geringeren Anzahl an Schusswa enbesitzern tendenziell weniger Fälle von Schusswa engewalt aufweisen. Eine begrenzte Ausgabe von Schusswa enlizenzen sowie Kau edingungen – einschließlich Verboten, Mindestalter der Käufer und Zuverlässigkeitsüberprüfung – wurden implementiert und verzeichnen positive Resultate in Ländern wie Australien, Brasilien und Neuseeland. Studien in Kolumbien und El Salvador zeigen, dass implementierte Gesetze über das Mitführen von Schusswa en in der Ö entlichkeit die Mordraten verringern können (55). Es sind ebenfalls vielfältige Strategien notwendig, um die Nachfrage nach Schusswa en zu reduzieren – z. B. gefährdete Jugendliche davon abbringen, Mitglieder einer Bande zu werden. In Bezug auf Messer und scharfe Gegenstände benötigen die Regierungen, zusätzlich zu den Kontrollmaßnahmen, weitreichende Strategien zur Reduzierung sozioökonomischer Faktoren, die zu Wa engewalt führen. Weniger wissenscha liche Beweise sind verfügbar über die Ergebnisse der Bemühungen zur Reduzierung von Gewaltausübung mit Hilfe scharfer Gegenstände, z. B. Messer, als über die Ergebnisse der Bemühungen zur Reduzierung von Schusswa engewalt. Bislang haben sich die betro enen Behörden auf Maßnahmen ähnlich der zur Kontrolle von Schusswa en verwendeten Maßnahmen konzentriert. Im Vereinigten Königreich beinhalteten diese gesetzliche Reformen (z. B. Verbote von Schnappmessern, Mindestalter für 58
Käufer), eine strengere Vollstreckung (Kontrollen und Durchsuchungen) und Wa enamnestien. Die Resultate dieser Maßnahmen sind jedoch noch unklar (55). Strategien zur Gewaltprävention, zusätzlich zu zugangsbeschränkenden Maßnahmen für tödliche Wa en wie Pistolen und Messer wie oben beschrieben, beinhalten die folgenden: die Entwicklung sicherer, stabiler und förderlicher Beziehungen zwischen Kindern und ihren Eltern sowie Betreuungspersonen, um Kindesmisshandlung und andere Formen von Gewalt später im Leben zu verhindern; die Entwicklung von Lebenskompetenzen bei Kindern und Jugendlichen, um einer möglichen Involvierung in Jugendkriminalität vorzubeugen; die Reduzierung der Verfügbarkeit und des Missbrauchs von Alkohol als Risikofaktor für alle Formen von Gewalt; die Förderung der Gleichstellung der Geschlechter, um Gewalt gegen Frauen zu verhindern; die Veränderung kultureller und sozialer Normen, die Gewalt unterstützen sowie Opferidenti zierung, P ege- und Unterstützungsprogramme.
Ursachen von nicht-traumatischer Querschnittlähmung Die Prävention von nicht-traumatischescher QSL hängt von breiteren Maßnahmen sowohl im Gesundheitswesen als auch in der Krankheitsbekämpfung ab. Vermeidbare Ursachen für eine Funktionsstörung des Rückenmarks beinhalten: ■ übertragbare Krankheiten – Tuberkulose (TB) und HIV; ■ nicht-übertragbare Krankheiten – Krebs, degenerative Krankheiten wie Osteoarthritis, die zu Spinalstenose führen, Herz-Kreislaufkrankheiten; ■ Mangelernährung – Neuralrohrdefekte, Vitamin B12-Mangel (56); ■ Komplikationen bei der medizinischen Versorgung.
Kapitel 3
Prävention von Querschnittlähmung
…Fortsetzung Es konnte gezeigt werden, dass die Einnahme von Folsäure als Ergänzungsmittel das Risiko Spina bifida betroffener Schwangerschaften oder anderer Neuralrohrdefekte um ca. 50% senkt (78). Da sich das Neuralrohr in einem frühen Stadium der Embryoentwicklung schließt (28 Tage nach der Empfängnis), ist die ideale Zeitspanne für die Einnahme von Folsäure vor der Schwangerschaft (79). Viele Schwangerschaften sind ungeplant und leider haben sich Aufklärungskampagnen, die Frauen dazu anhalten sollten, ihre Einnahme von Nahrungsergänzungsmitteln zu erhöhen als unwirksam erwiesen beim Versuch, Bevölkerungsgruppen zu erreichen, die einem höheren Risiko ausgesetzt sind. Dazu gehören ein niedriger sozioökonomischer Status, niedriger Bildungsstand, Immigrantenstatus, ungeplante Schwangerschaften, etc. (80). Um diesem Problem entgegenzuwirken, haben manche Länder sich dazu entschieden, Gesetze einzuführen, die eine Nahrungsmittelanreicherung mit Folsäure (FAFF) bei einer Reihe von Nahrungsmitteln vorschreiben (81). Es wurde nachgewiesen, dass FAFF den Folsäuremangel verbessert; seit FAFF gesetzlich eingeführt wurde, konnte in den USA, Kanada und West Australien ein Rückgang der Prävalenz von Neuralrohrdefekten von 15–50% beobachtet werden (82). Trotz der nachgewiesenen Wirksamkeit der FAFF Gesetzgebung, wurde FAFF nicht weltweit implementiert und Gesetze, die FAFF zwingend erforderlich machen, gibt es lediglich in Nord-, Mittel- und Südamerika (mit Ausnahme von Venezuela) und Australien. Dies trifft auch auf Teile der Regionen Afrika, Westlicher Pazifik und Südostasien zu sowie mehrheitlich auf die Region Östliches Mittelmeer. Teilweise wird FAFF in der Region Europa angewandt, jedoch lediglich in den osteuropäischen Ländern (d. h. in der Republik von Moldawien, Kasachstan, Usbekistan, Kirgisistan und Turkmenistan). Die Abbildung oben zeigt die Ergebnisse der Meta-Analyse, für die Daten aus Studien verwendet wurden, die Inzidenzraten vor und nach FAFF angeben. Die Metaanalyse zeigt eine Gesamteffektstärke (Inzidenzratenverhältnis) von 0,43 (95%-Vertrauensbereiche 0,39-0,63) wenn nur Studien verwendet wurden, die Lebendgeburten und Totgeburten in ihre Studienpopulation mit einbezogen. Unter diesen Betrachtungen könnte eine weltweit eingeführte Gesetzgebung zur Nahrungsmittelanreicherung mit Folsäure potenziell Spina bifida Geburten um rund 38.000 pro Jahr reduzieren (vgl. Technischer Anhang D für verwendete Methoden). Obwohl FAFF nachweislich Vorteile bringen würde, sträuben sich viele Länder, insbesondere in Westeuropa, gegen die Einführung einer FAFF Gesetzgebung. Die Gründe hierfür sind mögliche gesundheitliche Bedenken aufgrund eines erhöhten Folatkonsums, einhergehend mit eingeschränkter Autonomie, die manche als unabdingbar betrachten wenn FAFF gesetzlich vorgeschrieben werden würde. Momentan gibt es in vielen Ländern, in denen FAFF nicht gesetzlich vorgeschrieben ist, Empfehlungen für Frauen im gebärfähigen Alter zur Einnahme von Folsäure-Ergänzungsmitteln und, obwohl dies nachweislich Vorteile mit sich bringt, wurde diese Empfehlung meist nur von Frauen eines höheren sozioökonomischen Status beherzigt. Deshalb ist es notwendig, dies weiter zu erforschen, um fundierte Entscheidungen über politische Konzepte und Programme zu unterstützen, und Bedenken hinsichtlich einer schädlichen Wirkung hinreichend zu thematisieren.
der Empfängnis (3 Monate vor und nach der Empfängnis) verringerte nachweislich die Rate der Kinder, die mit einem Neuralrohrdefekt geboren wurden, einschließlich Spina bi da (60, 61). Eine israelische Studie zeigte beispielsweise, dass drei Jahre nach der Implementierung der Folsäure Zufuhr (2002 und 2004) die Inzidenzen von Spina bi da von 14,4 auf 8,9 pro 10.000 Lebendgeburten gesunken waren (84). Informationskampagnen können Wissen über den Folsäuregehalt bedeutend erweitern (94), jedoch ist fortwährende Au lärungsarbeit zur erfolgreichen Förderung der Einnahme vor der Empfängnis notwendig.
Aktivitäten, Örtlichkeiten und Gegebenheiten, die in Zusammenhang mit Querschnittlähmungen stehen Berufsbedingte Verletzungen Ein bedeutender Anteil der Unfälle, die zu QSL führen sind berufsbedingt (95, 96), insbesondere in der Baubranche, Landwirtscha und im Bergbau (95, 96). Die häu gsten äußeren Einwirkungen im Arbeitsumfeld sind Stürze aus der Höhe 61
Querschnittlähmung – Internationale Perspektiven
und von fallenden Gegenständen getro en oder eingequetscht werden (96). Querschnittlähmungen sowie andere schwere Verletzungen passieren häu g beim Untertagebau, bei dem der Hauptarbeitsbereich aus einem horizontalen Tunnel besteht und der Zugang zum Tunnel entweder vertikal oder abfallend ist. Während Bergbauarbeiten in Ländern mit einem hohen Nationaleinkommen o gut organisiert sind und strengen Vorschri en unterliegen (97–99), ist die Personensicherheit im Bergbau in Ländern mit niedrigen Nationaleinkommen, Armut, einer hohen Arbeitslosigkeit, einer schwachen Geltendmachung von Gesetzen und Korruption o mals nicht gegeben. In Afrika gibt es beispielsweise eine zunehmende Anzahl an kleinen Bergbaubetrieben des informellen Sektors, deren Schutzmechanismen für Gesundheit und Sicherheit unzureichend sind (100, 101). Unfälle mit Verletzungen in der Bergbaubranche werden möglicherweise nicht an Behörden gemeldet und Statistiken werden
o mals nicht gep egt. Die Bergbauindustrie liefert jedoch ein Beispiel für ein Präventionsprogramm (vgl. Kasten 3.4). Strategien zur Verhinderung von Verletzungen am Arbeitsplatz können die Entwicklung und Einführung von Arbeitsgesetzen, eines sektorenspezi schen Verhaltenscodes für Sicherheit und Gesundheit und die Implementierung von wissenscha lich gestützten Präventionsmaßnahmen sein (103 –106).
Verletzungen beim Sport und in der Freizeit Studien berichten über QSL in verschiedenen Sport- und Freizeitaktivitäten. Die Ursachen für QSL im Sport- und Freizeitbereich schließen mit ein: ■ Fahrzeugzusammenstöße, z. B. Motorräder, Quads und Rennautos; ■ Stürze auf gleicher Höhe, z. B. beim Rugby oder Skifahren;
Kasten 3.4. Prävention von Todesfällen und Verletzungen im Bergbau in Südafrika In Südafrika wurde es durch die Verfügbarkeit von Daten über Todesfälle und Verletzungen im Bergbau möglich, Ergebnisse von Verletzungspräventionsprogrammen zu messen, entscheidende Schritte zu identifizieren und Präventionsziele für die Zukunft zu definieren. Dieser systematische gesundheitspolitische Ansatz der Regierung umfasste:
■ Daten über die Größenordnung des Problems sammeln: d. h. die Anzahl der Todesfälle und Verletzungen im Bergbau, z. B. nach Örtlichkeit der Mine und Rohstoff (Gold, Kohle, etc.);
■ Gefahren identifizieren: Evakuierungsprozesse zur Handhabung geologischer, hydrologischer und seismologischer Probleme sowie Prozesse zur Beseitigung von Gesteinsbrocken;
■ Risiken analysieren und bewerten: dies beinhaltet, dass identifiziert wird, wodurch Menschen den Gefahren ausgesetzt werden, wie groß die Wahrscheinlichkeit und Häufigkeit der Gefahrenaussetzung ist und die möglichen Konsequenzen (einschließlich schwerer Verletzungen wie QSL); die Risikobeurteilung beinhaltet die bestehende Gefahr und deren Einstufung im Hinblick auf die Schwere; Schutzmaßnahmen identifizieren: dazu zählen Maßnahmen, die die Risiken reduzieren oder eliminieren können; Interventionen zur Risikokontrolle definieren und implementieren: z. B. die Arbeitsumgebung modifizieren, das Design von Ausrüstung überarbeiten, neue Regeln erstellen um die Risikoaussetzung zu reduzieren und Informationen und Schulungen anbieten, z. B. in Bezug auf Inspektionen und Sicherheitsprüfungen; Durchsetzungsbestimmungen stärken und Verstöße ahnden Beobachten und überarbeiten: Sicherstellen, dass Veränderungen der Gegebenheiten nicht die Wirksamkeit der Kontrollmaßnahmen reduzieren.
■ ■ ■ ■
Fortsetzung auf der nächsten Seite… 62
Querschnittlähmung – Internationale Perspektiven
…Fortsetzung Die wissenschaftliche Forschung in Australien hat gezeigt, dass Schulungen (sieben 10-minütige Sitzungen) über angemessene Sprungbedingungen (z. B. bekannte Wassertiefe von mehr als drei Metern, Abwesenheit von Gegenständen im Wasser, Vermeidung von Sprüngen in nicht in den Boden eingelassene Becken) und Sprungpositionen (Daumen verhaken, Arme über dem Kopf ausstrecken sowie Fertigkeiten bzgl. Eintauch- und Gleitsteuerung) wirksame Mittel sind, um die Eintauchtiefe zu verringern, und um sicherere Hand- und Armpositionen einzuführen (116 ). Die Nachverfolgung des Projekts zur Aufklärung von Kunstspringern hat gezeigt, dass die Teilnehmer die Informationen aufnahmen und die Tauchsprünge 20 Monate nach der Programmdurchführung weniger tief geblieben sind (117, 118). Die folgenden Hauptbereiche sollen u. a. zur Reduzierung der Anzahl der durch Tauchsprünge verursachten QSL verbessert werden (111, 114).
■ Nationale und internationale evidenzbasierte Designparameter für private und öffentliche Schwimmbecken sollen eingeführt und geltend gemacht werden zur Förderung von sicherem Springen.
■ Verkäufer und Käufer von Becken für die private Nutzung sollten in Schwimmbeckensicherheit geschult werden mit Betonung der Gefahren bei Kopfsprüngen ins flache Wasser.
■ Gefährdete Einzelpersonen in Schulen und Gemeinden sollten durch umfassende, auf wissenschaftlichen Daten basierende, Schulungen über Wassersicherheit informiert werden.
Die Forschung belegt, dass weltweit Sportverletzungen für 7% bis 18% aller Querschnittlähmungen verantwortlich sind (119 –121). Die Vermeidung von Querschnittlähmungen im
Rugby stellt ein überzeugendes Beispiel für Prävention dar, die erfolgreich im Kontext eines weit verbreiteten Teamsports implementiert wurde (vgl. Kasten 3.6).
Kasten 3.6. Neuseeland als führende Nation in der Prävention von Querschnittlähmungen beim Rugby Rugby ist ein Teamsport mit viel Körperkontakt. Seit Mitte der 1990er Jahre wuchs das Bewusstsein in Rugby spielenden Nationen wie Neuseeland und Südafrika, dass schwere nicht-tödliche Verletzungen, einschließlich QSL, während Spielen auf dem Sportfeld passierten. Daraufhin wurden Daten erhoben (Überwachung und Meldung von Verletzungen), um das Problem quantitativ zu erfassen. Die Accident Compensation Commission (ACC) und die New Zealand Rugby Union schlossen sich zusammen, um gemeinsam Querschnittlähmungen im Zusammenhang mit Sportarten mit viel Körperkontakt zu verhindern. Eine Studie über die Gegebenheiten in denen Verletzungen geschahen, identifizierte die folgenden Risiken: Phasen mit großem Risiko während des Spiels (das Gedränge, Tackling, und Pulk/Paket), Hochrisikophasen und -verhaltensweisen, einschließlich der schlechten Kondition eines Spielers, hohes Tackling, das Kinn während des Tackling senken; und unzureichende Erste Hilfe am Spielfeldrand (122). Die Häufigkeit von QSL in Zusammenhang mit Rugby in Neuseeland zwischen 1976 und 2005 ist in der ersten unten folgenden Abbildung zu sehen. Als Reaktion auf diese Ergebnisse wurde ein umfassendes Präventionsprogramm mit dem Namen RugbySmart in Neuseeland gestartet. Es beinhaltete die folgenden Interventionen: obligatorische Sicherheitsworkshops für Trainer, Schiedsrichter und Spieler; obligatorische Schulungen, in denen Informationen über Sicherheit und Ressourcen vermittelt werden; eine Website dazu sowie die Bereitstellung von Instrumenten zur Verletzungsprävention, wie z. B. eine Übersichtskarte für Trainer und Schiedsrichter, die Anhaltspunkte zur Überprüfung liefert, ob eine Gehirnerschütterung vorliegt oder nicht,. Alle Trainer mussten jährlich am RugbySmart Programm teilnehmen mit dem Resultat, dass fast 100% der Schiedsrichter und Trainer des Landes erreicht wurden (123).
Fortsetzung auf der nächsten Seite…
64
Kapitel 3
Prävention von Querschnittlähmung
Schlussfolgerung und Empfehlungen QSL ist weitgehend vorhersehbar und kann verhindert werden. Eine gründliche Untersuchung und Entwicklung während der letzten 30 Jahre führte zu Interventionen, die nachweislich die Inzidenz von QSL aufgrund verschiedener Ursachen – Straßenverkehrsunfälle, Stürze, Gewalt – sowie bei der Arbeit und bei sportlichen Aktivitäten reduzieren. Die Diskrepanz zwischen dem Wissen über wirksame Maßnahmen und deren Umsetzung ist enorm. Es wurde versucht, Beispiele für gute QSL-Präventionsprogramme in Ländern mit niedrigem und mittlerem Nationaleinkommen zu nden und zu dokumentieren, jedoch gibt es nur wenige. Dies bedeutet nicht, dass die in diesem Kapitel aufgezeigten Interventionen nicht in Ländern mit einem niedrigen oder mittleren Nationaleinkommen angewendet werden können, im Gegenteil – bei vielen ist dies möglich. Die Strategien müssen jedoch getestet und auf die lokalen Gegebenheiten und Bedingungen angepasst werden. Regierungen und andere in die Prävention involvierte Akteure werden dazu aufgefordert, die folgenden Bereiche mit Handlungsbedarf zu betrachten: ■ In fortführende Programme der Primärprävention investieren, die sich als wirksam erwiesen haben unter der Berücksichtigung von QSL (z. B. durch die Einführung obligatorischer Normen, die die Höhe der Kopfstützen in Fahrzeugen vorschreiben). Des Weiteren sollten zielgerichtete Maßnahmen eingeführt werden, um QSL bei der Arbeit oder bei sportlichen Aktivitäten mit hohem Risiko zu verhindern oder zu kontrollieren (z. B. Schulungsprogramme zur Prävention von Verletzungen beim Rugby).
■
■ ■
■
■
Das Gesundheitssystem stärken zur Identifizierung und Behandlung von Personen bei denen ein Risiko besteht, dass sie eine nicht-traumatische QSL (NTQSL) erleiden durch Krankheitsübertragung, nicht-übertragbare Krankheiten und Mangelernährung. Das Bewusstsein steigern über Präventionsmöglichkeiten von QSL, ohne dabei Menschen mit QSL zu demütigen. Forschungsprioritäten zur Verhinderung von QSL festlegen. Viele weitverbreitete Präventionsmaßnahmen stützen sich nicht auf eine fundierte Evidenzgrundlage (z. B. Kunstsprungtraining). Die Analyse von Risikofaktoren und Evaluierung von Interventionen sind der Schlüssel zur Bestimmung von wirksamen Interventionen, die somit gefördert werden sollten bzw. von unwirksamen Interventionen, vor denen gewarnt werden sollte. Alle relevanten Sektoren und Interessenvertreter einbeziehen. Um QSL zu verhindern, ist die Einbindung mehrerer Sektoren notwendig, z. B. der Sektoren Infrastruktur, Gesundheit, Industrie, Sport und Bildung, durch die Bekämpfung der verschiedenen Ursachen, Aktivitäten oder Gegebenheiten in Bezug auf QSL. Die Hauptkontrolle muss dabei zentral von einer Instanz ausgehen, um zu gewährleisten, dass die Implementierung vorangetrieben wird und die verschiedenen Sektoren fortwährend ihre Beiträge dazu leisten. Behörden darin bestärken, die für Präventionsprogramme verantwortlich sind, mit Wissenschaftlern zusammenzuarbeiten, damit Inzidenzraten als Grundlage für die Entwicklung von Präventionsstrategien verwendet und Wissenschaftler in die Überwachung und Evaluierung der daraus entstandenen Präventionskampagnen eingebunden werden können.
67
Querschnittlähmung – Internationale Perspektiven
Quellen 1. 2. 3. 4. 5. Tharion G, Nagarajan G, Bhattacharji S, eds. Prevention of spinal cord injury. In: Guidelines for care of persons with spinal cord injury in the community. Vellore, Christian Medical College. 2009. Shakespeare T. Still a health issue. Disability and Health Journal, 2012, 5:129-131. doi: http://dx.doi.org/10.1016/j. dhjo.2012.04.002 PMID:22726851 United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr. org/english/law/disabilities-convention.htm, accessed 9 May 2012) Wang CC. Portraying stigmatized conditions: disabling images in public health. Journal of Health Communication, 1998, 3:149-159. doi: http://dx.doi.org/10.1080/108107398127436 PMID:10977251 NSCISC. Annual report for the spinal cord injury model systems:2008 Birmingham, AL, National Spinal Cord Injury Statistical Centre, 2008 (https://www.nscisc.uab.edu/PublicDocuments/reports/pdf/2008%20NSCISC%20Annual%20Statistical%20 Report%20-%20Complete%20Public%20Version.pdf, accessed 9 April 2012). Henley G. Spinal cord injury, 1999−2005. NISU briefing No. 14, Cat. No. INJCAT 124. Canberra, Australian Institute of Health and Welfare, 2009 (http://www.aihw.gov.au/publication-detail/?id=6442468241, accessed 9 April 2012). Sekhon LH, Fehlings MG. Epidemiology, demographics, and pathophysiology of acute spinal cord injury. Spine, 2001, 26 Suppl:S2-S12. doi: http://dx.doi.org/10.1097/00007632-200112151-00002 PMID:11805601 Haddon W. Advances in the epidemiology of injuries as a basis for public health policy. Public Health Reports, 1980, 95:411421. PMID:7422807 Peden M et al., eds. World report on road traffic injury prevention. Geneva, World Health Organization, 2004. WHO. Global status report on road safety: time for action. Geneva, World Health Organization, 2009 (www.who.int/violence_injury_prevention/road_safety_status/2009, accessed 9 April 2012). Newton J. Road safety – Partnership programme. Shared responsibility. Western Australia, Office of Road Safety, 2008. OECD. Towards zero. Ambitious road safety targets and the safe system approach. Paris, Organisation for Economic Co-operation and Development, 2008 (http://www.oecd-ilibrary.org/transport/towards-zero_9789282101964-en, accessed 5 May 2012). Rasouli MR. Preventing motor vehicle crashes related spine injuries in children. World Journal of Pediatrics, 2011, 7:311-317. doi: http://dx.doi.org/10.1007/s12519-011-0327-z PMID:22015724 Elvik R. Area-wide urban traffic calming schemes: a meta-analysis of safety effects. Accident; Analysis and Prevention, 2001, 33:327-336. doi: http://dx.doi.org/10.1016/S0001-4575(00)00046-4 PMID:11235794 Mohan D, Tiwari G. Road safety in low-income countries: issues and concerns regarding technology transfer from highincome countries. In: Reflections on the transfer of traffic safety knowledge to motorising nations. Melbourne, Global Traffic Safety Trust, 1998:27–56. O’Connor PJ, Brown D. Relative risk of spinal cord injury in road crashes involving seriously injured occupants of light passenger vehicles. Accident; Analysis and Prevention, 2006, 38:1081-1086. doi: http://dx.doi.org/10.1016/j.aap.2006.04.013 PMID:16756930 Haworth N et al. Characteristics of fatal single vehicle crashes. Report 120. Clayton, Monash University Accident Research Centre, 1997. McElhaney JH et al. Biomechanical aspects of cervical trauma. In: Nahum AM, Melvin JW, eds. Accidental injury – biomechanics and prevention. 2nd ed. New York, NY, Springer-Verlag, 2002. Viano DC, Chantal S, Parenteau CS. Analysis of head impacts causing neck compression injury. Traffic Injury Prevention, 2008, 9:144-152. doi: http://dx.doi.org/10.1080/15389580801894940 PMID:18398778 O’Neill B. Preventing passenger vehicle occupant injuries by vehicle design − a historical perspective from IIHS. Traffic Injury Prevention, 2009, 10:113-126. doi: http://dx.doi.org/10.1080/15389580802486225 PMID:19333823 MacLennan PA et al. Vehicle rollover risk and electronic stability control systems. Injury Prevention, 2008, 14:154-158. doi: http://dx.doi.org/10.1136/ip.2007.016576 PMID:18523106 European Road Safety Observatory. eSafety. Brussels, European Commission, 2006 (http://ec.europa.eu/transport/wcm/ road_safety/erso/knowledge/Fixed/04_esave/esafety.pdf, accessed 21 March 2012). Corben B et al. The general effectiveness of countermeasures for crashes into fixed roadside objects. Report 111. Clayton, Monash University Accident Research Centre, 1997. Soloman L, Warwick D, Nayagam S. Apley’s system of orthopaedics and fractures, 8th ed. London, Arnold, 2001. Viano DC. Seat design principles to reduce neck injuries in rear impacts. Traffic Injury Prevention, 2008, 9:552-560. doi: http://dx.doi.org/10.1080/15389580802381939 PMID:19058102 Farmer CM et al. Relationship of dynamic seat ratings to real-world neck injury rates. Traffic Injury Prevention, 2008, 9:561567. doi: http://dx.doi.org/10.1080/15389580802393041 PMID:19058103
6. 7. 8. 9. 10. 11. 12. 13. 14. 15.
16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26.
68
Kapitel 3
Prävention von Querschnittlähmung
27. Fitzharris M et al. Crash-based evaluation of Australian Design Rule 69: (Full FrontalIimpact Occupant Protection). Canberra, Australian Transport Safety Bureau, 2006 (http://www.infrastructure.gov.au/roads/safety/publications/2006/pdf/ Grant_Report200603.pdf?bcsi_scan_C7A381BA8BD8A412=0&bcsi_scan_filename=Grant_Report200603.pdf, accessed 21 March 2012). 28. Morris A, Welsh R, Frampton R. An overview of requirements for the crash protection of older drivers. Annu Proc Assoc Adv Automto Med, 2002, 46:141–156. 29. Ferguson SA, Schneider LW. An overview of frontal air bag performance with changes in frontal crash-test requirements: findings of the Blue Ribbon Panel for the evaluation of advanced technology air bags. Traffic Injury Prevention, 2008, 9:421431. doi: http://dx.doi.org/10.1080/15389580802046250 PMID:18836952 30. Lie A et al. Intelligent seat belt reminders − do they change driver seat belt use in Europe? Traffic Injury Prevention, 2008, 9:446-449. doi: http://dx.doi.org/10.1080/15389580802149690 PMID:18836955 31. Winston FK, Durbin D. When “buckle up” is not enough: enhancing the safety of children in motor vehicles. Leonard Davis Institute Issue Brief, 2000, 5:1–4. 32. Achildi O, Betz RR, Grewal H. Lapbelt injuries and the seatbelt syndrome in pediatric spinal cord injury. The Journal of Spinal Cord Medicine, 2007, 30 Suppl. 1:S21-S24. PMID:17874682 33. Durbin DR et al. Effects of seating position and appropriate restraint use on the risk of injury to children in motor vehicle crashes. Pediatrics, 2005, 115:e305-e309. doi: http://dx.doi.org/10.1542/peds.2004-1522 PMID:15741356 34. Liu BC et al. Helmets for preventing injury in motorcycle riders. Cochrane database of systematic reviews, 2008, 23:CD004333. 35. Zaza S et al. Reviews of evidence regarding interventions to increase use of child safety seats. American Journal of Preventive Medicine, 2001, 21 Suppl:31-47. doi: http://dx.doi.org/10.1016/S0749-3797(01)00377-4 PMID:11691560 36. National Highway Traffic Safety Administration. Traffic safety facts 2004: occupant protection. Washington, DC, National Highway Traffic Safety Administration, 2004. 37. Ian R et al. School based driver education for the prevention of traffic crashes. Cochrane database of systematic reviews, 2001, 3:CD003201. PMID:11687049 38. Dellinger A et al. Interventions to prevent motor vehicle injuries. In: Doll L et al., eds. Handbook of injury and violence prevention. New York, NY, Springer, 2007:55–79. 39. Cummings P et al. Air bags and passenger fatality according to passenger age and restraint use. Epidemiology (Cambridge, Mass.), 2002, 13:525-532. doi: http://dx.doi.org/10.1097/00001648-200209000-00007 PMID:12192221 40. Passmore JW et al. The formulation and implementation of a national helmet law: a case study from Viet Nam. Bulletin of the World Health Organization, 2010, 88:783-787. doi: http://dx.doi.org/10.2471/BLT.09.071662 PMID:20931064 41. Elvik R, Vaa T, eds. The handbook of road safety measures. Amsterdam, Elsevier Science Ltd, 2004. 42. Bunn F et al. Area-wide traffic calming for preventing traffic related injuries. Cochrane database of systematic reviews, 2003, 1:CD003110. PMID:12535454 43. Hedlund J, Compton R. Graduated driver licensing research in 2004 and 2005. Journal of Safety Research, 2005, 36:109-119. doi: http://dx.doi.org/10.1016/j.jsr.2005.02.001 PMID:15896351 44. Stevenson M et al. Reducing the burden of road traffic injury: translating high-income country interventions to middle-income and low-income countries. Injury Prevention, 2008, 14:284-289. doi: http://dx.doi.org/10.1136/ip.2008.018820 PMID:18836043 45. Hoque MF, Grangeon C, Reed K. Spinal cord lesions in Bangladesh: an epidemiological study 1994−1995. Spinal Cord, 1999, 37:858-861. doi: http://dx.doi.org/10.1038/sj.sc.3100938 PMID:10602529 46. Jumah KB, Nyame PK. Relationship between load carrying on the head and cervical spondylosis in Ghanaians. West African Journal of Medicine, 1994, 13:181-182. PMID:7841112 47. Jäger HJ et al. Degenerative changes in the cervical spine and load-carrying on the head. Skeletal Radiology, 1997, 26:475481. doi: http://dx.doi.org/10.1007/s002560050269 PMID:9297752 48. Demura S et al. Selection of useful items for fall risk screening for community dwelling Japanese elderly from the perspective of fall experience, physical function, and age level differences. Archives of Gerontology and Geriatrics, 2011, 53:123-130. doi: http://dx.doi.org/10.1016/j.archger.2010.11.012 PMID:21131069 49. Spiegel CN, Lindaman FC. Children can’t fly: a program to prevent childhood morbidity and mortality from window falls. American Journal of Public Health, 1977, 67:1143-1147. doi: http://dx.doi.org/10.2105/AJPH.67.12.1143 PMID:596496 50. Barlow B et al. Ten years of experience with falls from a height in children. Journal of Pediatric Surgery, 1983, 18:509-511. doi: http://dx.doi.org/10.1016/S0022-3468(83)80210-3 PMID:6620098 51. Peden M et al., eds. World report on child injury prevention. Geneva, World Health Organization, 2008. 52. Cripps RA et al. A global map for traumatic spinal cord injury epidemiology: towards a living data repository for injury prevention. Spinal Cord, 2011, 49:493-501. doi: http://dx.doi.org/10.1038/sc.2010.146 PMID:21102572
69
Querschnittlähmung – Internationale Perspektiven
53. Krug E et al., eds. World report on violence and health. Geneva, World Health Organization, 2002. 54. Zeilig G et al. Civilian spinal cord injuries due to terror explosions. Spinal Cord, 2010, 48:814-818. doi: http://dx.doi. org/10.1038/sc.2010.22 PMID:20309003 55. WHO. Guns, knives, and pesticides: reducing access to lethal means. Geneva, World Health Organization, 2009. 56. Wee JYM, Schwarz R. An international comparative study assessing impairment, activities, and participation in spinal cord injury rehabilitation – a pilot study. Asia Pacific Disability Rehabilitation Journal, 2004, 15:42-52. 57. Staudinger R, Henry K. Remission of HIV myelopathy after highly active antiretroviral therapy. Neurology, 2000, 54:267-268. doi: http://dx.doi.org/10.1212/WNL.54.1.267 PMID:10636172 58. Jutte PC, van Loenhout-Rooyackers JH. Routine surgery in addition to chemotherapy for treating spinal tuberculosis. Cochrane Database of Systematic Reviews, 2006, 25:CD004532. CD004532.pub2 59. WHO/FAO/UNICEF/GAIN/MI/ FFI. Recommendations on wheat and maize flour fortification. Meeting Report: Interim Consensus Statement. Geneva, World Health Organization, 2009 (http://www.who.int/nutrition/publications/micronutrients/wheat_ maize_fort.pdf accessed 28 May 2012). 60. De-Regil LM, Fernández-Gaxiola AC, Dowswell T, Peña-Rosas JP. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database of Systematic Reviews, 2010, 6:(10)CD007950. Review. PubMed PMID: 20927767 PMID:20927767 61. Toriello HV. Policy and Practice Guideline Committee of the American College of Medical Genetics. Policy statement on folic acid and neural tube defects. Genetics in Medicine, 2011, 13:593-596. doi: http://dx.doi.org/10.1097/ GIM.0b013e31821d4188 PMID:21552133 62. Fernández-Gaxiola AC, De-Regil LM. Intermittent iron supplementation for reducing anaemia and its associated impairments in menstruating women. Cochrane Database of Systematic Reviews, 2011, 7:(12)CD009218. Review. PubMed PMID: 22161448 PMID:22161448 63. WHO. Guideline: Intermittent iron and folic acid supplementation in menstruating women. Geneva, World Health Organization, 2011. 64. Godlwana L et al. Incidence and profile of spinal tuberculosis in patients at the only public hospital admitting such patients in KwaZulu-Natal. Spinal Cord, 2008, 46:372-374. doi: http://dx.doi.org/10.1038/sj.sc.3102150 PMID:18317491 65. Moon MS. Tuberculosis of the spine. Controversies and a new challenge. Spine, 1997, 22:1791-1797. doi: http://dx.doi. org/10.1097/00007632-199708010-00022 PMID:9259793 66. Dye C, Williams BG. The population dynamics and control of tuberculosis. Science, 2010, 328:856-861. doi: http://dx.doi. org/10.1126/science.1185449 PMID:20466923 67. Chaudhary M et al. Diagnosis of tuberculosis in an era of HIV pandemic: a review of current status and future prospects. Indian Journal of Medical Microbiology, 2010, 28:281-289. doi: http://dx.doi.org/10.4103/0255-0857.71805 PMID:20966555 68. Rasit AH, Razak M, Ting FS. The pattern of spinal tuberculosis in Sarawak General Hospital. The Medical Journal of Malaysia, 2001, 56:143-150. PMID:11771073 69. Harries AD et al. The HIV-associated tuberculosis epidemic − when will we act? Lancet, 2010, 375:1906-1919. doi: http:// dx.doi.org/10.1016/S0140-6736(10)60409-6 PMID:20488516 70. Cormican L et al. Current difficulties in the diagnosis and management of spinal tuberculosis. Postgraduate Medical Journal, 2006, 82:46-51. doi: http://dx.doi.org/10.1136/pgmj.2005.032862 PMID:16397080 71. Maccauro G et al. Physiopathology of spine metastasis − review article. International Journal of Surgical Oncology, 2011,Article ID:107969, 8 pages doi: http://dx.doi.org/10.1155/2011/107969 PMID:22312491 72. George R et al. Interventions for the treatment of metastatic extradural spinal cord compression in adults. Cochrane Database of Systematic Reviews, 2008, 4:CD006716. CD006716.pub2 PMID:18843728 73. Molina CA, Gokaslan Z, Sciubba D. A systematic review of the current role of minimally invasive spine surgery in the management of metastatic spine disease. International Journal of Surgical Oncology, 2011, doi: http://dx.doi. org/10.1155/2011/598148 PMID:22312514 74. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 75. Nikkilä A, Rydhstrom H, Källén B. The incidence of spina bifida in Sweden 1973–2003: the effect of prenatal diagnosis. European Journal of Public Health, 2006, 16:660-662. doi: http://dx.doi.org/10.1093/eurpub/ckl053 PMID:16672253 76. Orioli IM et al. Effects of folic acid fortification on spina bifida prevalence in Brazil. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:831-835. doi: http://dx.doi.org/10.1002/bdra.20830 PMID:21630426 77. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554
70
Kapitel 3
Prävention von Querschnittlähmung
78. 79. 80. 81. 82. 83. 84. 85. 86. 87.
88.
89.
90. 91. 92. 93. 94. 95. 96. 97. 98. 99. 100. 101.
102.
Centers for Disease Control and Prevention. Recommendations for the use of folic acid to reduce the number of cases of spina bifida and other neural tube defects. MMWR. Morbidity and Mortality Weekly Report, 1992, 41(RR-14):1-7. Crider KS, Bailey L, Berry R. Folic acid food fortification – its history, effect, concerns, and future directions. Nutrients, 2011, 3:370-384. Ray JG et al. Association of neural tube defects and folic acid food fortification in Canada. Lancet, 2002, 360:2047-2048. doi: http://dx.doi.org/10.1016/S0140-6736(02)11994-5 PMID:12504403 Flour Fortification Initiative website (http://www.ffinetwork.org/country_profiles/index.php, accessed 17 May 2013). Cornel MC, de Smit DJ, de Jong-van den Berg LTW. Folic acid – the scientific debate as a base for public policy. Reproductive Toxicology (Elmsford, NY), 2005, 20:411-415. doi: http://dx.doi.org/10.1016/j.reprotox.2005.03.015 PMID:15978774 Centers for Disease Control and Prevention. Racial/ethnic differences in the birth prevalence of spina bifida – United States, 1995–2005. MMWR. Morbidity and Mortality Weekly Report, 2009, 57:1409-1413. PMID:19129744 Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 Barboza Argüello ML, Umaña Solís LM. Impact of the fortification of food with folic acid on neural tube defects in Costa Rica. Revista Panamericana de Salud Pública, 2011, 30:1-6. PMID:22159644 De Wals P et al. Reduction in neural-tube defects after folic acid fortification in Canada. The New England Journal of Medicine, 2007, 357:135-142. doi: http://dx.doi.org/10.1056/NEJMoa067103 PMID:17625125 López-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. [– Chile]. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 López-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. [– Argentina]. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 Sayed AR et al. Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2008, 82:211-216. doi: http://dx.doi. org/10.1002/bdra.20442 PMID:18338391 Persad VL et al. Incidence of open neural tube defects in Nova Scotia after folic acid fortification. Canadian Medical Association Journal, 2002, 167:241-245. PMID:12186168 Flour Fortification Initiative. FFI Database. Atlanta, 2012 (http://www.sph.emory.edu/wheatflour/globalmap.php, accessed 28 may 2012). Williams LJ et al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995–2002. Pediatrics, 2005, 116:580-586. doi: http://dx.doi.org/10.1542/peds.2005-0592 PMID:16140696 Berry RJ, Bailey L, Mulinare J, Bower C. Folic Acid Working Group. Fortification of flour with folic acid. Food and Nutrition Bulletin, 2010, 31:(1 Suppl)S22-35. Review. PubMed PMID: 20629350 PMID:20629350 Rofail D et al. Factors contributing to the success of folic acid public health campaigns. Journal of Public Health, 2012, 34:90-99. doi: http://dx.doi.org/10.1093/pubmed/fdr048 PMID:21727078 O’Connor P. Work related spinal cord injury, Australia 1986–1997. Injury Prevention, 2001, 7:29-34. doi: http://dx.doi. org/10.1136/ip.7.1.29 PMID:11289531 Correa GI et al. Work-related traumatic spinal cord lesions in Chile, a 20-year epidemiological analysis. Spinal Cord, 2011, 49:196-199. doi: http://dx.doi.org/10.1038/sc.2010.71 PMID:20548320 Sanmiquel L et al. Analysis of work related accidents in the Spanish mining sector from 1982−2006. Journal of Safety Research, 2010, 41:1-7. doi: http://dx.doi.org/10.1016/j.jsr.2009.09.008 PMID:20226944 Hodous TK, Layne LA. Injuries in the mining industry. Occupational Medicine, 1993, 8:171-184. PMID:8456346 Boden LI. Government regulation of occupational safety: underground coal mine accidents 1973−75. American Journal of Public Health, 1985, 75:497-501. doi: http://dx.doi.org/10.2105/AJPH.75.5.497 PMID:3985237 ILO. Social and labour issues in small-scale mines, Geneva, International Labour Organization, 1999, (http://www.ilo.org/ public/english/dialogue/sector/techmeet/tmssm99/tmssmr.htm, accessed 5 October 2012) ILO. Accelerating action against child labour. Report of the Director-General, International Labour Conference, 99th session, 2010, Geneva, International Labour Organization (http://www.ilo.org/global/resources/WCMS_126752/lang--en/index. htm, accessed 5 October 2012). Department of Mineral Resources. 2003–2011 Falls of ground. Pretoria, Republic of South Africa, Department of Mineral Resources, 2011 (http://www.dmr.gov.za/publications/summary/134-2003 — 2011/410-2003-2011falls-of-ground-accidentsgraph.html, accessed 15 March 2012).
71
Querschnittlähmung – Internationale Perspektiven
103. ILO. Code of practice on safety and health in underground coalmines. Meeting of Experts on Safety and Health in Coal Mines, Geneva, 8−13 May 2006. Geneva, International Labour Organization, 2006. 104. ILO. Code of practice on safety and health in agriculture. Meeting of Experts to Adopt a Code of Practice on Safety and Health in Agriculture, Geneva, 25−29 October 2010. Geneva, International Labour Organization, 2010. 105. Stout NA, Linn HI. Occupational injury prevention research: progress and priorities. Injury Prevention, 2002, 8 Suppl 4:IV9IV14. doi: http://dx.doi.org/10.1136/ip.8.suppl_4.iv9 PMID:12460949 106. Litchfield MH. Agricultural work related injury and ill-health and the economic cost. Environmental Science and Pollution Research International, 1999, 6:175-182. doi: http://dx.doi.org/10.1007/BF02987623 PMID:19009396 107. Amorim EC et al. Spine trauma due to diving: main features and short-term neurological outcomes. Spinal Cord, 2011, 49:206-210. doi: http://dx.doi.org/10.1038/sc.2010.79 PMID:20625383 108. Vlok AJ et al. Shallow-water spinal injuries − devastating but preventable. South African Medical Journal, 2010, 100:682684. PMID:21081000 109. Ye C et al. Pattern of sports- and recreation-related spinal cord injuries in Beijing. Spinal Cord, 2009, 47:857-860. doi: http:// dx.doi.org/10.1038/sc.2009.49 PMID:19436265 110. Aito S, D’Andrea M, Werhagen L. Spinal cord injuries due to diving accidents. Spinal Cord, 2005, 43:109-116. doi: http:// dx.doi.org/10.1038/sj.sc.3101695 PMID:15558081 111. Barss P et al. Risk factors and prevention for spinal cord injury from diving in swimming pools and natural sites in Quebec, Canada: a 44-year study. Accident; Analysis and Prevention, 2008, 40:787-797. doi: http://dx.doi.org/10.1016/j.aap.2007.09.017 PMID:18329434 112. Korres DS et al. Diving injuries of the cervical spine in amateur divers. The Spine Journal, 2006, 6:44-49. doi: http://dx.doi. org/10.1016/j.spinee.2005.06.013 PMID:16413447 113. WHO. Guidelines for safe recreational water environments. Volume 2: Swimming pools and similar environments. Geneva, World Health Organization, 2006. 114. Cusimano MD, Mascarenhas AM, Manoranjan B. Spinal cord injuries due to diving: a framework and call for prevention. The Journal of Trauma, 2008, 65:1180-1185. doi: http://dx.doi.org/10.1097/TA.0b013e3181826e09 PMID:19001991 115. FINA. Facilities rules, No. 5: Diving Facilities. Lausanne, Fédération Internationale de Natation (International Swimming Federation), 2010 (http://www.fina.org/H2O/index.php?option=com_content&view=article&id=368:fr-5-divingfacilities&catid=88:facilities-rules&Itemid=184, accessed 14 March 2012). 116. Blitvich JD, McElroy GK, Blanksby BA. Risk reduction in diving spinal cord injury: teaching safe diving skills. Journal of Science and Medicine in Sport, 2000, 3:120-131. doi: http://dx.doi.org/10.1016/S1440-2440(00)80074-2 PMID:11104304 117. Blitvich JD et al. Retention of safe diving skills. Journal of Science and Medicine in Sport, 2003, 6:155-165. doi: http://dx.doi. org/10.1016/S1440-2440(03)80251-7 PMID:12945622 118. Blitvich JD et al. Long term retention of safe diving skills. Journal of Science and Medicine in Sport, 2003, 6:348-354. doi: http://dx.doi.org/10.1016/S1440-2440(03)80029-4 PMID:14609152 119. Knútsdóttir S et al. Epidemiology of traumatic spinal cord injuries in Iceland from 1975 to 2009. Spinal Cord, 2012, 50:123126. doi: http://dx.doi.org/10.1038/sc.2011.105 PMID:21946442 120. Furlan JC et al. Assessment of disability in patients with acute traumatic spinal cord injury: a systematic review of the literature. Journal of Neurotrauma, 2011, 28:1413-1430. doi: http://dx.doi.org/10.1089/neu.2009.1148 PMID:20367251 121. Boran S et al. A 10-year review of sports-related spinal injuries. Irish Journal of Medical Science, 2011, 180:859-863. doi: http://dx.doi.org/10.1007/s11845-011-0730-4 PMID:21792709 122. NZRU. RugbySmart. Wellington, New Zealand Rugby Union (http://www.nzrugby.co.nz/the_game/safety/rugbysmart, accessed 9 April 2012). 123. Quarrie KL et al. Effect of nationwide injury prevention programme on serious spinal injuries in New Zealand rugby union: ecological study. British Medical Journal, 2007, 334:1150. doi: http://dx.doi.org/10.1136/bmj.39185.605914.AE PMID:17513314 124. NZRU/ACC. RugbySmart DVD. New Zealand Rugby Union in conjunction with Accident Compensation Corporation, 2012. 125. BokSmart. Winners play smart rugby. Cape Town, The BokSmart National Rugby Safety Program, 2009 (http://www. sarugby.co.za/boksmart/, accessed 9 April 2012). 126. Ackery A et al. An international review of head and spinal cord injuries in alpine skiing and snowboarding. Injury Prevention, 2007, 13:368-375. doi: http://dx.doi.org/10.1136/ip.2007.017285 PMID:18056311 127. Hessler C et al. Spine injuries due to horse riding accidents – an analysis of 30 cases [article in German]Sportverletzung Sportschaden, 2011, 25:93-96. doi: http://dx.doi.org/10.1055/s-0029-1245831 PMID:21611912 128. Bhide VM, Edmonds V, Tator C. Prevention of spinal cord injuries caused by diving: evaluation of the distribution and usage of a diving safety video in high schools. Injury Prevention, 2000, 6:154-156. doi: http://dx.doi.org/10.1136/ip.6.2.154 PMID:10875676
72
Kapitel 3
Prävention von Querschnittlähmung
129. WHO/UNICEF. World report on child injury prevention. Geneva, World Health Organization and United Nations Children’s Fund, 2008. 130. Louge P et al. Current management of diving-related spinal cord decompression sickness in 2010 [article in French]. La Presse Medicale, 2010, 39:778-785. doi: http://dx.doi.org/10.1016/j.lpm.2010.02.049 PMID:20466511 131. PAHO. Natural disasters – protecting the public’s health. Washington, DC, Pan American Health Organization, 2000. 132. PAHO. Earthquake in Haiti: PAHO/WHO situation report on health activities post earthquake. Pan American Health Organization, 2010 (http://reliefweb.int/sites/reliefweb.int/files/resources/Full_Report_3342.pdf, accessed 5 May 2012).126. Ackery A et al. An international review of head and spinal cord injuries in alpine skiing and snowboarding. Injury Prevention, 2007, 13:368–375. http://dx.doi.org/10.1136/ip.2007.017285 PMID:18056311doi: http://dx.doi.org/10.1136/ ip.2007.017285 PMID: 18056311
73
Kapitel 4 Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
„Im Alter von 15 Jahren wurden bei mir eine akute lymphatische Leukämie und weitere Komplikationen diagnostiziert. Nach meinem 16. Geburtstag im Krankenhaus, entwickelte sich eine schnell fortschreitende Paraplegie mit einer sensorischen Lähmung unterhalb von Th6 zusammen mit einer neurologischen Blasen- und Darmfunktionsstörung. Die Ursache der Tetraplegie bleibt unklar; vermutlich ist jedoch eine Gegenreaktion auf die Chemotherapie die wahrscheinlichste Erklärung. Nach einer Phase der medizinischen Versorgung zuhause und einer fortlaufenden kompletten Remission des Rückenmarks, ging es mir im Juli 1990 so gut, dass ich mit der Rehabilitation auf einer Station für Wirbelsäulenerkrankungen beginnen konnte. Die Zeit dort war schwierig als junge weibliche Patientin, denn ich hatte keinerlei Unterstützung von anderen jungen Menschen und konnte nicht mit anderen Mädchen sprechen. Mein Wunsch, diese Klinik zu verlassen, spornte mich dazu an, schwer an mir selbst zu arbeiten und mit einem Rollstuhl zu leben. Nach drei Monaten konnte ich nach Hause zurückkehren und ein selbständigeres Leben beginnen.“ (Anne, Australien) „Ich erwachte auf der Intensivstation und blickte in das Gesicht eines Mannes – eines Arztes – mit Bart. Beinahe drohend und bestimmend sagte er zu mir, „Sie wissen, dass Sie nie mehr gehen können werden“. Ich sah in fragend und ungläubig an. Er wollte, dass ich ihm antwortete und sagte, dass ich verstünde, ich stand jedoch unter Schock und wusste so gut wie nichts über Querschnittlähmung. Ich wusste überhaupt nicht, was dies bedeutete und selbst wenn ich es gewusst hätte, hätte ich es damals nicht geglaubt, weil ich es nicht akzeptieren konnte. Es war zu früh, um mit solch einem Schicksalsschlag konfrontiert zu werden... “ (Joanna, Neuseeland) „Jeder ist dazu aufgerufen, täglich Sport zu treiben – weshalb also sollten Menschen mit einer Querschnittlähmung davon ausgenommen sein? Meiner Meinung nach hilft mir Sporttreiben dabei, viele potenzielle Komplikationen zu vermeiden, die entstehen könnten und hält mich körperlich und geistig fit – heute und in der Zukunft. Am liebsten gehe ich in meinem Kinn-gesteuerten Rollstuhl mit meiner Frau und meinen Kindern hinaus auf die Koppeln oder an den Strand, ist meine Lieblingsbeschäftigung.“ (Brad, Australien) „Ich hatte täglich Therapie und das war eine große Erleichterung. Ich bewunderte die Krankenpflegerinnen, insbesondere die, die mir das Blasen- und Darmmanagement beibrachte (ich hatte noch einen Dauerkatheter). Ich musste auf einem sehr hohen Bett liegen, um die elektrischen Schläge zu minimieren, wenn jemand mich oder mein Bett berührte. Langsam erlernte ich Techniken, die mir halfen mich zu baden, zu transferieren und im Rollstuhl zu bewegen. Die Hemmungen der Patienten der Station für Wirbelsäulenerkrankungen waren wie weggeblasen als die Hosen derjenigen, die aufzustehen versuchten, bis zu den Knöcheln hinunterrutschten, und wir solange lachten, bis wir nicht mehr konnten – wir hatten im wahrsten Sinne des Wortes die Hosen runtergelassen.“ (Angela, Uganda) „Ich hatte Blasensteine nachdem ich vor 2 Jahren aus dem Krankenhaus entlassen wurde und wurde zur Operation in ein Krankenhaus eingeliefert. Ich litt unter Dekubitus an den Hüften, jedes Mal wenn ich zu spät umgelagert wurde. Inzwischen achte ich mit der Hilfe von Reha-Spezialisten ausreichend darauf, Druckstellen und Harnweginfektionen zu vermeiden. Ich werde versuchen, gesund zu bleiben, kann jedoch nichts versprechen.“ (Chen, China)
4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation Ob traumatischen oder nicht-traumatischen Ursprungs, in beiden Fällen stellt Querschnittlähmung (QSL) ein erhebliches Gesundheitsproblem dar. Während QSL stets das Leben verändert, bedeutet das nicht, dass es keine Möglichkeiten für Betro ene mehr gibt, ein gutes und erfülltes Leben zu führen. Die Auswirkungen von QSL im gesellscha lichen Bereich hängen nicht unbedingt vom Schweregrad der Verletzung ab, sondern von gesellscha lichen Faktoren und Umweltfaktoren, insbesondere von der Verfügbarkeit einer adäquaten und zugänglichen Gesundheitsversorgung. Wird sie richtig behandelt, muss eine QSL nicht tödlich verlaufen oder jemanden davon abhalten, Bildung zu genießen, Arbeit zu nden, eine Familie zu haben und ein erfolgreiches und produktives Leben zu führen. Während im nächsten Kapitel soziale Barrieren und fördernde Faktoren beleuchtet werden, geht es in diesem Kapitel um die Gesundheitsversorgung und Rehabilitation einschließlich unterstützender Technologien. Die UN-Konvention über die Rechte von Menschen mit Behinderungen (BRK) etabliert das Recht von Menschen mit Behinderungen auf das erreichbare Höchstmaß an Gesundheit gemäß Artikel 25, die Bereitstellung von Rehabilitation (einschließlich unterstützender Technologien) in Artikel 26 und persönliche Mobilität (einschließlich unterstützender Technologien) in Artikel 20 (1). Dieses Kapitel analysiert die Auswirkungen, die QSL auf die Gesundheit eines Betro enen haben kann, die Komplikationen, die Betro ene erfahren können und wie sie mit diesen während der drei wichtigsten Phasen der Gesundheitsversorgung umgehen können. Diese Phasen sind: ■ Versorgung vor der Krankenhauseinlieferung und die Akutversorgung – Die Notwendigkeit, das unmittelbare Überleben zu sichern und den Patienten zu stabilisieren. Ohne die richtige Erstversorgung kann eine QSL lebensbedrohlich sein und die Möglichkeit einer zukünftigen Funktionsfähigkeit und Unabhängigkeit verringert werden. ■ Post-akute medizinische Versorgung und Rehabilitationsdienste – Das Sicherstellen, dass eine maximale Funktionsfähigkeit erreicht wird, und dass der Betroffene so unabhängig wie möglich leben kann, um Schule, Ausbildung, Studium oder Arbeit wieder aufzunehmen. Adäquate unterstützende Hilfsmittel spielen dabei eine essenzielle Rolle. Ohne Zugang zu 77
Querschnittlähmung – Internationale Perspektiven
■
Rehabilitation und unterstützenden Hilfsmitteln, besteht für die betroffene Person wenig Hoffnung, am gesellschaftlichen Leben teilhaben zu können. Erhaltung der Gesundheitsversorgung – so dass eine betroffene Person die durch die QSL entstehenden Komplikationen vermeiden oder überleben kann, wie z. B. Harnweginfektionen (HWI), Dekubitus und Verletzungen durch Überbeanspruchung, dass sie gesund bleibt und ein langes Leben genießen kann. Ohne Zugang zur medizinischen Grundversorgung ist es wahrscheinlicher, dass eine Person mit QSL frühzeitig stirbt.
In diesem Kapitel können nicht alle Gesundheitsbedürfnisse von Personen mit QSL behandelt werden aufgrund des begrenzten Umfangs dieses Berichts. Ziel ist es, politische Entscheidungsträger und Leiter von Gesundheitsdienste über die potenziellen Komplikationen von QSL zu informieren sowie über die wichtigsten Leistungen, die über die drei Phasen der P ege hinweg benötigt werden.
und Höhe der Verletzung) auf der Grundlage einer systematischen, sensorischen und motorischen Untersuchung der neurologischen Funktionen zu beschreiben (2). Auf Basis der Schwere der Verletzung können zwei Arten von QSL unterschieden werden (2): ■ Komplette Querschnittlähmung – Personen, die eine komplette Querschnittlähmung erleiden, verfügen über keine sensorischen oder motorischen Funktionen unterhalb der Läsionshöhe und insbesondere auf der Höhe S4–S5. ■ Inkomplette Querschnittlähmung – bei Personen, die eine inkomplette Querschnittlähmung erleiden, bleiben manche Funktionen erhalten (z. B. sensorische Funktionen und Muskelfunktionen) unterhalb der Läsionshöhe, einschließlich der tiefsten sakralen Segmente S4–S5. Es gibt verschiedene Arten der inkompletten QSL, wie das anteriore, zentrale und posteriore Rückenmarkssyndrom und das Brown-Sequard Syndrom, welches einen Einfluss auf die Restfunktion haben kann. Die Höhe auf welcher das Rückenmark beschädigt wurde ist entscheidend dafür, welche Körperteile von der Lähmung betro en sind, d. h. Verlust von Muskelfunktion und Emp ndung (2): ■ Paraplegie – bezieht sich auf eine Verletzung der thorakalen (Th2–Th12), lumbalen (L1–L5) oder sakralen (S1–S5) Segmente der Wirbelsäule, einschließlich des Conus medullaris (der distale knollige Teil der Wirbelsäule) und der Cauda equina (Sammlung von Nervenwurzeln, die sich vom Rückenmark der Segmente L1−L2 fächerartig ausbreiten). Dies führt zu einem unterschiedlich stark ausgeprägten Verlust von Kontrolle über die unteren Gliedmaßen und den Rumpf, während die oberen Gliedmaßen nicht davon betroffen sind. Personen mit einer kompletten QSL zwischen Th2 und Th8 haben nur wenig Kontrolle über den Rumpf aufgrund der fehlenden Kontrolle
Die gesundheitlichen Auswirkungen von Querschnittlähmung verstehen Die neurologische Schädigung, die sowohl bei einer traumatischen als auch einer nicht-traumatischen QSL verursacht wird, verhindert, dass sensorische und motorische Informationen unterhalb der Verletzungshöhe von und zum Gehirn geleitet werden. Die Auswirkungen der QSL auf die Funktionsfähigkeit hängen von der Höhe und der Schwere der Verletzungen und der verfügbaren Gesundheitsversorgung ab. Die International Standards for Neurological Classication of Spinal Cord Injury werden o im Kontext der Gesundheitsversorgung verwendet, um das Ausmaß der Verletzung (einschließlich Art 78
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
■
über die Bauchmuskulatur und des Funktionsverlusts in den unteren Gliedmaßen; Personen mit einer kompletten QSL im unteren Bereich der Brustwirbelsäule zwischen Th9 und Th12 haben eine gute Kontrolle über den Rumpf und Bauchraum, jedoch keine Funktion in den unteren Gliedmaßen; Personen mit lumbalen oder sakralen Verletzungen hingegen verfügen über ein gewisses Maß an Kontrolle über ihre unteren Gliedmaßen. Abbildung 1.1 in Kapitel 1 zeigt die Lage der verschiedenen Segmente der Wirbelsäule. Tetraplegie – beschreibt eine Verletzung der zervikalen Segmente der Wirbelsäule, d. h. zwischen C1 und Th1. Abhängig von der Schwere und der Höhe der Verletzung resultiert die Tetraplegie in einem unterschiedlich stark ausgeprägten Funktionsverlust im Hals, Rumpf sowie in den oberen und unteren Gliedmaßen. Personen mit einer kompletten QSL auf Höhe C1−C3, z. B., benötigen ein Beatmungsgerät; Personen mit einer kompletten Lähmung auf Höhe C5 können ihre Schultern und Oberarme bewegen, jedoch nicht ihre Handgelenke und Hände; Personen mit einer kompletten QSL auf Höhe C7−C8 können ihre oberen Gliedmaßen bewegen, haben jedoch Probleme mit der Geschicklichkeit von Händen und Fingern.
Mögliche Komplikationen Bei Menschen mit QSL besteht die Gefahr einer Reihe von Sekundärerkrankungen, die wesentliche Ursachen für die Morbidität und Mortalität darstellen können. Während einige dieser Komplikationen hauptsächlich während der Versorgungsphase vor der Klinikeinlieferung und während der Akutversorgungsphase nach der Verletzung au reten, können andere wiederum zu jedem Zeitpunkt au reten. Daten belegen, dass mit einem angemessenen Management viele dieser Sekundärerkrankungen verhindert werden können. Autonome Dysre exie: Charakteristisch für diesen Zustand ist der plötzliche Anstieg des Blutdrucks. Die autonome Dysre exie kommt häu g bei Menschen mit QSL mit einer Läsionshöhe von 6 (5) oder höher vor. Weitere Anzeichen und Symptome sind starke Kopfschmerzen, Schweißausbruch, Hautrötungen (im Gesicht), Sehstörungen, Gänsehaut und Herzrhythmusstörungen (5 –7). Auslöser kann unter anderem ein noxischer Reiz sein; meistens liegt eine ausgedehnte oder blockierte Harnblase oder ein verstop er Darm als Ursache vor. Bei einer autonomen Dysre exie handelt es sich um einen medizinischen Notfall, der unbehandelt schwere Folgen wie Schlaganfall, Krampfanfall oder gar Tod mit sich bringen kann. Au lärung über Präventions- und Managementstrategien ist für Tetraplegiker und Paraplegiker mit einem hohen Lähmungsniveau sowie für deren Familien und P egende äußerst wichtig (6). Tiefe Venenthrombose (TVT): Bei Personen mit QSL besteht die Gefahr der TVT, insbesondere während der akuten und postakuten Verletzungsphase, wenn Änderungen der normalen neurologischen Kontrolle der Blutgefäße und Immobilität in Stauungsdermatosen resultieren können (8). Zusätzliche Risikofaktoren umfassen Alter, Fettleibigkeit, Vorhandensein von Frakturen in den unteren Gliedmaßen, Schwangerscha 79
Das Kreislaufsystem
Zusätzlich zum motorisch-sensorischen Verlust beein usst QSL die autonome neurologische Funktion des Körpers, was zu verschiedenen Beeinträchtigungen wie dem Verlust von Darm-, Blasen- und Sexualfunktionen führt (3). Menschen mit QSL können auch Einschränkungen in ihren Aktivitäten und in der Teilhabe erfahren in Bereichen wie Mobilität (z. B. Veränderung der Körperposition, Transferieren und Gehen), Selbstversorgung (z. B. Baden, Anziehen, zur Toilette gehen, Essen), im Haushalt arbeiten (z. B. Putzen, Kochen, anderen helfen), Bildung, Arbeit, soziale Beziehungen p egen und an Freizeitaktivitäten teilhaben (4).
Querschnittlähmung – Internationale Perspektiven
und zuvor bestehende TVT-Probleme. Anzeichen und Symptome sind unter anderem Schmerzen, Schwellungen, Schmerzemp ndlichkeit, Hautverfärbungen und erhöhte Temperatur des betro enen Körperteils (8). TVT kann zu einer Lungenembolie und zum Tod führen. Eine rasche Behandlung mit gerinnungshemmenden Mitteln (8) ist deshalb unerlässlich. Präventivmaßnahmen wie gerinnungshemmende Mittel oder das Tragen von Stützstrümpfen sind außerordentlich wichtig und sollten standardmäßig in jedem Krankenhaus angewendet werden (8, 9). Hypotonie: Orthostatische Hypotonie ist gekennzeichnet durch einen starken Blutdruckabfall, wenn sich eine Person aus einer liegenden Position aufrichtet. Sowohl Paraplegiker als auch Tetraplegiker sind davon betro en und sie tritt häu g während der Akutphase der Verletzung auf; manche Symptome können aber auch erst später au reten (10, 11). Charakteristische Symptome sind unter anderem Müdigkeit, Benommenheit, Sehstörungen, Muskelschwäche und sogar vorübergehende Bewusstlosigkeit (12). Maßnahmen zum Management beinhalten eine genaue Beobachtung, langsame Veränderung der Position und, falls notwendig, die Einnahme von Arzneimitteln und Salztabletten (13). Harnweginfektionen (HWI): HWI kommen o bei querschnittgelähmten Menschen vor und werden als häu gste Ursache für eine Hospitalisierung in Ländern mit hohem Nationaleinkommen und für einen vorzeitigen Tod in Entwicklungsländern genannt (6, 14–16). QSL beein usst die Blasenfunktion und viele Betro ene verwenden einen Katheter als Managementmaßnahme (s. unten). Daten belegen, dass die Art des Blasenmanagements und die verwendeten Katheterarten möglicherweise das Risiko einer HWI beein ussen (14): (16). Weitere Faktoren, die mit einem erhöhten HWI Risiko in Verbindung gebracht werden, sind Flüssigkeitsaufnahme, Körperp ege, Schwangerscha , Sozialleistungssysteme und Zugang zu Gesundheitsdienstleistungen (17). 80
Äußere Anzeichen und Symptome von HWI sind unter anderem das Au reten von Harninkontinenz, trüber und verstärkt übel riechender Urin, Fieber, Unwohlsein oder Lethargie sowie eine Verschlimmerung anderer QSL bedingter Komplikationen wie verstärkte spastische Lähmungen, neuropathische Schmerzen und autonome Dysre exie (6, 15, 16). Laboruntersuchungen (Analyse von Urinkulturen) werden durchgeführt, um sicher zu gehen, dass eine HWI vorliegt, und um die beste Behandlungsmethode zu bestimmen (6, 15, 16). Die Prävention von HWI ist eines der wichtigsten Ziele des Blasenmanagements. Au lärung über die richtigen Katheterisierungsmethoden und die richtige P ege sind dabei wesentlich. Weitere Managementansätze beinhalten Nachsorgeuntersuchungen, angemessene Flüssigkeitszufuhr, stets eine gute Körperp ege und eine angemessene P ege der für das Blasenmanagement verwendeten medizinischen Geräte (6, 15). Spastische Lähmungen/Krämpfe: Eine spastische Lähmung ist eine häu g vorkommende Sekundärerkrankung bei Personen mit QSL (18): (13). Sie kann unwillkürliche Bewegungen und das Entstehen von Kontrakturen in den Gelenken hervorrufen, wodurch deren Beweglichkeit eingeschränkt und die Funktionsfähigkeit vermindert werden kann. Management-Maßnahmen beinhalten: passives Bewegen oder Strecken durch manuelle erapie, Selbstausführung oder Positionierung, mit Hilfe einer Lagerungsschiene und/oder einer Gipsbehandlung; aktives Bewegen und Übungen; elektronische, mechanische oder ermaltechniken, um Muskeln oder Nerven zu stimulieren sowie kramp ösende Medikamente (18–20). Osteoporose unterhalb der Läsionshöhe: Nach dem Eintritt einer QSL nimmt die Knochenmasse sofort ab und deshalb besteht ein erhöhtes Osteoporoserisiko unterhalb der Läsionshöhe (21). Eine unzureichende Kalziumaufnahme über die Nahrung, ungenügend Vitamin
Das neuromuskuloskelettale System
Das Urogenitalsystem
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
D, Altern und zu wenig Bewegung können ebenfalls zu Veränderungen in der Knochendichte führen (21). Bei Osteoporose besteht für Querschnittgelähmte ein erhöhtes Risiko für Knochenbrüche, die während alltäglicher Aktivitäten wie Transferieren schnell geschehen können. Aufgrund des sofortigen Verlustes von Knochenmasse nach einer Rückenmarksverletzung, ist ein frühes Management der Knochengesundheit besonders wichtig. Beispiele für Interventionen sind: Biophosphonate (Medikamente zur Prävention oder Behandlung der Reduzierung der Knochenmasse) in Kombination mit Vitamin D und/oder Kalzium; belastende Aktivitäten und Elektrostimulation. Es gibt jedoch nur wenige Daten, die deren Wirksamkeit belegen (21–25). Heterotope Ossi kation: Heterotope Ossikation ist ein Gesundheitsproblem bei dem sich anormale Knochen in den Weichteilen der Gelenke unterhalb der QSL bilden. Häu g betro ene Gelenke sind die Hü en, Knie und bei Halswirbelverletzungen, die Schultern und Ellenbogen (13). Eine Heterotope Ossi kation schränkt die Beweglichkeit der Gelenke ein und kann so die Funktionsfähigkeit der betro enen Personen mit QSL bedeutend beein ussen. Es ist wichtig, dies durch Knochendichtemessungen und Röntgenaufnahmen früh zu erkennen. Da die Ursache von Heterotopen Ossi kationen unklar ist, stellt deren Management eine Herausforderung dar. Die wenigen verfügbaren Nachweise empfehlen, dass eine frühe Verabreichung von entzündungshemmenden Medikamenten das Risiko einer Heterotopen Ossi kation wirksam reduzieren kann. Behandlungsmaßnahmen wie Medikamente und Strahlentherapie können dazu beitragen, das Fortschreiten einer Heterotropen Ossi kation zu verhindern und eine Operation kann die Beweglichkeit der betro enen Gelenke verbessern (26).
Das Atmungssystem
Atmungsfunktion: Die Lungenkapazität, das mühelose Atmen und die Fähigkeit zu husten
und Sekrete auszustoßen sind nach dem Eintreten einer QSL als Folge einer Lähmung der für die Atmung notwendigen Muskulatur oft eingeschränkt (27, 28). Tetraplegiker mit einer hohen Lähmungshöhe sind besonders davon betroffen. Querschnittgelähmte auf und über dem C3 Niveau sind möglicherweise auf eine dauerhafte mechanische Beatmung oder Implantation eines Zwerchfellschrittmachers angewiesen, um eine ausreichende Atmung zu ermöglichen (29 –31). Bei manchen betroffenen Personen wird während der Akutversorgungsphase eine Tracheotomie eingeführt, um einen ausreichend großen Atemweg zu schaffen, und um den Ausstoß von Sekreten und die Beatmung zu erleichtern (13). Atemwegskomplikationen: Lungenentzündung, Atelektase („kollabierte Lunge“), Aspiration und Lungenversagen sind auch weiterhin die wichtigsten Ursachen für Morbidität und Tod bei Menschen mit QSL. Ein gutes Management ermöglicht es jedoch, solche Komplikationen zu verhindern. Maßnahmen umfassen eine jährliche Grippeimpfung, eine fün ährliche Pneumokokken-Impfung, die sofortige Behandlung von Infektionen der oberen Atemwege mit Antibiotika und eine frühzeitige Implementierung von unterstütztem Husten bei Querschnittgelähmten mit einer hohen Läsionshöhe. Das langfristige Management beinhaltet: eine regelmäßige Beurteilung und Überprüfung der Atmungs- und Lungenfunktionen; mechanische Kurz- oder Langzeit Beatmungshilfen; Training der Atemmuskulatur; Ausdauertraining; psychologische Unterstützung, um Bewältigungsstrategien zu entwickeln, insbesondere für Betro ene, die auf ein Beatmungsgerät angewiesen sind, und Au lärung der Querschnittgelähmten und deren Familienmitgliedern (29). In manchen Situationen kann ein Schrittmacher operativ implantiert werden, um manche für die Atmung essenziellen Nerven und Muskeln zu stimulieren (z. B. Zwerchfell), und um eine Atmung ohne Beatmungshilfe zu ermöglichen (29, 32). 81
Querschnittlähmung – Internationale Perspektiven
Die meisten von QSL betro enen Menschen leiden an chronischen Schmerzen; diese können ihre Lebensqualität maßgeblich beein ussen (13, 33-35). Die International Spinal Cord Injury Pain Class cation wurde kürzlich für Kliniker und Wissenscha ler zur Unterstützung bei der Klassi zierung von Schmerzen nach dem Eintritt der QSL entwickelt (36, 37). Ein bedeutender Teil von Querschnittgelähmten leidet als Folge der Schädigung des Rückenmarks an neuropathischen Schmerzen, die o als brennend, stechend, schmerzend und/oder, ähnlich einem Elektroschock, als stechend beschrieben werden (13, 33, 38). Querschnittgelähmte können an muskuloskelettalen Schmerzen als Resultat von Überbeanspruchung leiden, z. B. Schmerzen in der Schulter durch konstantes Anstoßen eines manuellen Rollstuhls, Muskelkrämpfe, mechanische Instabilität oder schlechte Körperhaltung (39). Jeder Einzelne erlebt Schmerzen anders und deshalb müssen biomedizinische, kulturelle und psychologische Faktoren ebenfalls in Betracht Kasten 4.1. Definitionen
Schmerzen
gezogen werden (35, 40 –42). Multidisziplinäre Ansätze sind für Schmerzmanagement-Programme notwendig. Diese umfassen Maßnahmen wie Medikamente, Übungen, Massagen, Akupunktur, Psychotherapie, Meditation und Entspannung, Bereitstellung unterstützender Technologien (vgl. Kasten 4.1 für die De nition), Überprüfung und Anpassung der Sitzsysteme und Au lärung über alternative Methoden der Ausführung von Aktivitäten wie Transfers (13, 33, 34, 38).
Die Haut
Dekubitus: Bei Querschnittgelähmten besteht ein großes Dekubitusrisiko infolge der eingeschränkten Sensibilität und Mobilität. Weitere Verhaltens-, soziodemographische und medizinische Faktoren – Rauchen, Nährsto mangel (Mangelernährung, Untergewicht, Anämie), Infektionen, Feuchtigkeit durch Schwitzen oder Inkontinenz oder Begleiterkrankungen wie Diabetes und Lungenerkrankungen – können das Dekubitusrisiko erhöhen (46 –48). Ein Dekubitus
Unterstützende Technologie: Unterstützende Technologie kann definiert werden als ein Gerät oder Produkt, entweder kommerziell erworben, abgeändert oder angepasst, das verwendet wird, um die Funktionsfähigkeit von Personen mit Behinderungen aufrecht zu erhalten oder zu steigern (43). Umweltanpassungen: Die Zugänglichkeit der physischen Umwelt hat Auswirkungen auf sowohl die funktionale Leistung von Personen mit Behinderungen als auch auf deren Fähigkeit, spezielle unterstützende Hilfsmittel zu verwenden. Sowohl individuelle Umweltmodifikationen (wie das Installieren einer Griffstange zum erleichterten Transfer auf oder von der Toilette oder die Anpassung der Türbreite , um einem Rollstuhlfahrer Zugang zu gewähren) als auch Modifikationen auf gesellschaftlicher Ebene (wie Rampen und Aufzüge in öffentlichen Gebäuden) können Betroffenen helfen, Barrieren zu Hause, in der Schule oder am Arbeitsplatz zu überwinden. Universelles Design und Mainstream Technologie: Universelles Design wird von der BRK definiert als die Gestaltung von Produkten, Umgebungen, Programmen und Diensten mit der Prämisse, dass alle Menschen diese nutzen können, und zwar im größtmöglichen Umfang und ohne erforderliche Anpassung oder spezielles Design (1).Während sich dieser Teil auf Produkte konzentriert, die speziell für die Verwendung von Querschnittgelähmten gestaltet wurden, sollte man sich dessen bewusst sein, dass auf dem Markt viele Technologien mit Merkmalen des universellen Designs erhältlich sind, die ebenfalls nützlich sein können (z. B. Mobiltelefone, Computer und Küchengeräte). Weitere Informationen hierzu liefert Kapitel 7. Geeignete Technologie : Dieser Begriff wird verwendet, um Technologie zu beschreiben, die den Bedürfnissen des Nutzers in seiner Umwelt gerecht wird (44, 45 ). Dies beinhaltet Technologie, die für die Nutzer geeignet ist, Passgenauigkeit bietet und angemessene Haltungsunterstützung, die sicher und strapazierfähig ist, im jeweiligen Land verfügbar ist, und die zu einem erschwinglichen Preis erworben und Instand gehalten werden kann (45 ).
82
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
kann jederzeit entstehen und kann die Gesundheit, Funktionsfähigkeit und Lebensqualität des Betro enen stark beein ussen (46) sowie eine große Belastung für das Gesundheitssystem darstellen aufgrund von häu geren und längeren Krankenhausaufenthalten (49). Die Prävention von Dekubitus stellt einen der wichtigsten Aspekte bei der Gesundheitsversorgung von Querschnittgelähmten dar und ist kostene zienter als die Behandlung (47). Daraus ergibt sich, dass Betro ene und deren Familien darüber aufgeklärt und in Management-Techniken als Teil ihrer lebenslangen Betreuung geschult werden sollten (47, 50). Die Prävention umfasst einfache Maßnahmen wie eine regelmäßige Überprüfung der Haut, Methoden zur Druckentlastung, ein angemessenes Darmund Blasenmanagement, die Bereitstellung von adäquaten Hilfsmitteln und eine gute Ernährung (46 –48, 51). Bei den Behandlungsmaßnahmen kann es sich um eine angemessene Behandlung der Wunde handeln, um Druckentlastungsmaßnahmen, Antibiotika gegen Infektionen und operative Eingri e (46 –48, 50).
Bedarf an Gesundheitsversorgung Versorgung vor der Krankenhauseinlieferung und die Akutversorgung Die Versorgung in den ersten 24 Stunden und den ersten Tagen nach einer traumatischen QSL ist essenziell und kann die Folgen für eine verletzte Person maßgeblich beein ussen (51). Eine fachgerechte Versorgung vor der Krankenhauseinlieferung umfasst: die schnelle Beurteilung, einschließlich Messung der Vitalparameter und Grad des Bewusstseins; Einleitung der Verletzungsversorgung, einschließlich Stabilisierung der Vitalparameter, Ruhigstellung der
Wirbelsäule zur Erhaltung neurologischer Funktionen bis die Langzeitstabilisierung vorgenommen werden kann, Kontrolle von Blutungen, Körpertemperatur und Schmerzen; sowie der sofortige und sichere Zugang zum Gesundheitsversorgungssystem (48, 51–55). Personen, die eine QSL erlitten haben, sollten innerhalb von zwei Stunden nach Eintreten der Verletzung in einer Einrichtung für Akutversorgung eintre en (54). Interventionen in der Akutphase, die zusätzlich zu den bei allen schweren Verletzungen anwendbaren Verfahren (z. B. Infusion, Blasendrainage, Überwachen der Vitalparameter) angewendet werden, beinhalten: Priorisierung und Behandlung von lebensbedrohlichen Verletzungen, um die Überlebenschance zu maximieren; Behandlung von Verletzungen, die zu Behinderungen führen können, um Beeinträchtigungen zu minimieren; Linderung von Schmerzen und psychologischen Leiden (54). Eine akkurate Diagnose von QSL und sämtlichen damit einhergehenden Verletzungen (z. B. traumatische Hirnverletzung, gebrochene Gliedmaßen, Verletzungen des Brust- oder Bauchraumes, Wunden und penetrierende Verletzungen) ist unerlässlich, um eine adäquate medizinische Versorgung und Rehabilitation einleiten zu können. Die Beurteilung sollte sofort bei der Ankun im Krankenhaus beginnen und Folgendes umfassen: Anamnese; Anzeichen und Symptome, z. B. Schwäche, De zite in den sensorischen und motorischen Funktionen, Funktionsstörung von Darm und Blase, Deformation der anatomischen Strukturen, lokal begrenzte Schmerzemp ndlichkeit; neurologische (motorische und sensorische) Untersuchung; radiologische bildgebende Verfahren, d. h. Röntgen, Computertomographie und/oder Kernspintomographie sowie Labortests, z. B. Blut, Mikrobiologie. Konservative und/oder operative Interventionen sind notwendig, wenn die Wirbelsäule instabil ist oder eine dauerha e Kompression des Rückenmarks vorliegt. Sowohl bei traumatischer als auch nicht-traumatischer QSL haben 83
Querschnittlähmung – Internationale Perspektiven
beide Verfahren (konservativ und operativ) Vorund Nachteile (in Form von möglichen Komplikationen). Vielerlei Faktoren sollten bei der Bestimmung des am besten geeigneten Ansatzes in Betracht gezogen werden, einschließlich Schwere der Verletzung, Art des Bruchs, Instabilitätsgrad, Vorhandensein neuraler Kompressionen, Einwirkung weiterer Verletzungen, zeitliche Abstimmung der chirurgischen Intervention, Verfügbarkeit von Ressourcen wie Expertise sowie Vorteile und Risiken. In jedem Fall jedoch sollte es den Betro enen ermöglicht werden, eine fundierte Entscheidung zwischen einer konservativen Behandlung und einem chirurgischem Eingri zu tre en. Eine konservative Behandlung beinhaltet Maßnahmen zur Fixierung der Wirbelsäule und um eine weitere Verschiebung zu verhindern, wie z. B. durch Bettruhe, Traktion der Wirbelsäule oder Tragen einer Orthese (z. B. eine Halo-Weste) zur Fixierung der Wirbelsäule, was normalerweise über einen Zeitraum von sechs Wochen oder länger nötig ist. Ein chirurgischer Eingri kann durchgeführt werden, um (i) die Wirbelsäule zu entlasten durch eine Verminderung der Verschiebung und/oder durch die Entfernung von gebrochenen Fragmenten, die Druck auf die Nervenstrukturen ausüben sowie (ii) durch die Stabilisierung der Wirbelsäule mit Implantaten und Knochentransplantationen. Neuere Daten einer prospektiven Studie mit 313 Patienten mit einer Querschnittlähmung zwischen C2 und 1, die in mehreren Zentren in Nordamerika durchgeführt wurde, belegen, dass eine frühe Entlastung mittels eines chirurgischen Eingri s, d. h. innerhalb der ersten 24 Stunden nach Eintritt der QSL, bessere neurologische Ergebnisse erzielen kann (56). Sowohl bei der konservativen Behandlungsmethode als auch beim chirurgischen Eingri gibt es Vorteile und mögliche Komplikationen und es gibt nur wenige Studien und Übereinstimmung darüber, welcher Ansatz bessere neurologische Ergebnisse erzielt, weniger Komplikationen mit sich bringt, eine frühere Mobilisierung und 84
Rehabilitation zulässt und kostene zienter ist (13, 51, 57– 61). Die Akutversorgung bei einer nicht-traumatischen QSL ist ähnlich wie bei einer traumatischen QSL, mit einigen Abweichungen aufgrund der Ursache. Ein chirurgischer Eingri wird nicht in Betracht gezogen bei: degenerativen Erkrankungen, wenn diese den Spinalkanal massiv beeinträchtigen (62, 63); spinalen Tumoren, die häu g mit Bestrahlung und Chemotherapie behandelt werden (64) und die Blutgefäße der Wirbelsäule betre ende Erkrankungen, mit Ausnahme von Infarkten (65, 66). Eine durch Infektionskrankheiten verursachte nicht-traumatische QSL kann ebenfalls eine Operation erforderlich machen, normalerweise ist jedoch eine sofortige medikamentöse Behandlung mit Antibiotika, antiviralen Mitteln oder Antiparasitika notwendig (67).
Postakute medizinische Versorgung und Rehabilitation Eine adäquate medizinische Versorgung und Rehabilitation können Komplikationen im Zusammenhang mit QSL verhindern und den Betro enen dabei unterstützen, ein erfüllendes und produktives Leben zu führen. Rehabilitation wird als eine „Reihe von Maßnahmen“ de niert, die „Betro ene dabei unterstützen, eine optimale Funktionsfähigkeit bei der Interaktion mit deren Umwelt zu erlangen und zu erhalten“ (44). Mit der Rehabilitation sollte bei Querschnittgelähmten in der Akutphase begonnen werden. Sie sollte auch danach weiterhin verfügbar sein zur Förderung der Funktionsfähigkeit und auch während Klinikaufenthalten, in der persönlichen Umwelt sowie in der Community. Die Wiederherstellung der Funktionsfähigkeit hat für Querschnittgelähmte hohe Priorität. Studien zeigen, dass das Erlangen von Funktionsfähigkeit in den oberen Gliedmaßen hohe Priorität für Tetraplegiker und das Wiedererlangen der Sexualfunktionen hohe Priorität für Paraplegiker hat, während die Wiederherstellung der
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
Blasen- und Darmfunktion für beide Gruppen wichtig ist (68–71). Im folgenden Teil wird untersucht, wodurch Körperfunktionen und mentale Funktionen verbessert werden können. Der Verlust der normalen Blasenfunktion stellt eine der schwerwiegendsten Folgen der Verletzung für Querschnittgelähmte dar. Ein unzureichendes Blasenmanagement kann zu sekundären Komplikationen wie Harnweginfektionen (HWI), Harnstauung, Inkontinenz, Steinen in den Nieren und Harnwegen sowie Rück uss des Urins führen (15). Jedes dieser Probleme kann beim Bestehen über einen längeren Zeitraum hinweg zu lebensbedrohlichen Komplikationen wie Nierenversagen führen (13, 16). Verwendete Methoden zur Unterstützung von Querschnittgelähmten bei der Blasenentleerung umfassen (15, 16): ■ Intermittierendes Katheterisieren – beinhaltet das Einführen eines Katheters in die Blase zur Urinentleerung, um diesen danach sofort wieder zu entfernen. Dies wird regelmäßig über den ganzen Tag hinweg durchgeführt. Es können entweder sterile Einwegsysteme (d. h. zur einmaligen Verwendung) oder Mehrwegsysteme (d. h. Desinfektion und Aufbewahrung des Katheters für die weitere Benutzung) verwendet werden. ■ Dauerkatheterisierung – bedeutet das Einführen eines Katheters in die Blase, wo er kurz- oder langfristig verbleibt. Die beiden Hauptarten von Dauerkathetern sind 1) der urethrale Katheter und 2) der suprapubische Katheter, welcher durch einen kleinen chirurgischen Eingriff oberhalb des Schambeins eingeführt wird. ■ Weitere Methoden – umfassen manuelle Methoden, um die Entleerung zu starten oder das Kondomurinal -ein externer kondomartiger Katheter- der mit einem Drainagebeutel verbunden ist (nur für männliche Betroffene); Einnahme von Medikamenten;
Elektrostimulation und operative Eingriffe zur Harnableitung oder ein künstlicher Ausgang zur Katheterisierung. Für jeden Betro enen muss ein individuelles Blasenmanagement-Programm erstellt werden, das Faktoren wie Geschlecht, Blasenfunktion, Mobilität, Gleichgewicht beim Sitzen, Handfunktion und die Lebensweise berücksichtigt. Ebenfalls berücksichtigt werden sollten Vor- und Nachteile im Zusammenhang mit den verschiedenen Möglichkeiten der Blasenkontrolle und ob diese für den Betro enen jeweils angemessen und verfügbar sind. Von manuellen Methoden wird generell abgeraten; deren ausschließliche Anwendung über einen langen Zeitraum hinweg gilt nicht als beste Vorgehensweise (16, 72). Wissenscha lich erhobene Daten weisen darauf hin, dass eine intermittierende Katheterisierung zu den bevorzugten Möglichkeiten gehört, da generell weniger Komplikationen au reten, insbesondere im Vergleich zu Dauerkathetern (16). Eine randomisierte kontrollierte Studie in den USA zeigte, dass ein kurzes Schulungsprogramm (bestehend aus einer erfahrenen Fachkra der Krankenp ege zur Beobachtung der Katheterisierungstechniken, medizinischer Beratung zur Verbesserung des Blasenmanagements und der Inanspruchnahme von Gesundheitsversorgungsdiensten, der Bereitstellung von schri lichem Informationsmaterial über HWI und einem anschliessenden Telefonat zur Diskussion von Fragen, die nach der Schulung aufgekommen sind) zu einem Rückgang der Anzahl der angegebenen Symptome, der Antibiotikabehandlungen und der Anzahl an HWI führte (14). Die Forschung hat auch gezeigt, dass sterile Einwegkatheter eine sichere, kostene ziente Methode zur Anwendung in ressourcenarmen Gebieten darstellen (72–74).
Management der Blasenfunktion
Darmmanagement
Ein neurogener Darm ist ein weit verbreitetes Gesundheitsproblem nach einer QSL, das in Verbindung mit einer großen Anzahl von 85
Querschnittlähmung – Internationale Perspektiven
Magen-Darm Problemen steht, einschließlich geringer Darmbewegung, verlängerter Darmpassage, chronischer Obstipation, abdominaler Distension und Stuhlinkontinenz (75 –77). Querschnittgelähmte mit einem neurogenen Darm haben o Angst vor einer möglichen Darminkontinenz, welche die Möglichkeiten der Betro enen, zu ihren früheren sozialen Rollen und Aktivitäten zurückzukehren, maßgeblich beein ussen kann (75, 76). In Gebieten mit eingeschränkten Ressourcen kann es besonders schwierig sein, ein adäquates Management der Darmfunktion zu erreichen. Eine in Pakistan nach dem Erdbeben von 2005 durchgeführte Studie fand beispielsweise heraus, dass ein beschränkter Zugang zu einer angemessenen Gesundheitsversorgung, zu medizinischen Hilfsmitteln und Sanitäranlagen die Möglichkeit einzelner Betro ener beein usste, das notwendige Darmmanagement durchzuführen (78). Ebenso wie beim Blasenmanagement muss ein individuelles Darmmanagement-Programm für jeden einzelnen Betro enen erstellt werden. Eine umfassende Untersuchung, die Entwicklung eines individuell erstellten Darmprogramms sowie Überwachung und Au lärung sind wichtige Aspekte dieses Prozesses (76). Die Einführung eines solchen Programms kann unter anderem die folgenden Maßnahmen umfassen: ■ ausreichende und angemessene Nahrungsund Flüssigkeitsaufnahme; ■ die Verwendung von Nahrungsergänzungsmitteln und von einzunehmenden Medikamenten wenn notwendig; ■ die Auswahl angemessener Methoden zur Darmentleerung und Darmausräumung wie physische Verfahren (z. B. manuelle Ausräumung, digitale Stimulation des Mastdarms und Analkanals und Positionierung) sowie stimulierende Mittel wie Zäpfchen, Einläufe oder Abführmittel; ■ ein chirurgischer Eingriff zur Herstellung eines Stomas zur Darmentleerung; und ■ Strategien zum Management von Komplikationen (75, 77, 79 –81). 86
QSL und die damit verbundenen Beeinträchtigungen können die physiologischen, praktischen und psychologischen Aspekte der Sexualfunktion – Erregung, Reaktion, sexuelle Entfaltung und Fruchtbarkeit beein ussen. Sowohl Männer als auch Frauen können unter Gefühlsverlust, Problemen einen Orgasmus zu bekommen, Schwierigkeiten mit Bewegungen und Stellungen sowie vermindertem Selbstwertgefühl und Selbstvertrauen leiden (82–84). Zusätzlich können Männer eine komplette oder teilweise Beeinträchtigung bei der Peniserektion und Ejakulation erfahren, was Folgen für die Fruchtbarkeit hat (85). Bei Frauen kann es nach der Verletzung zu einer Unterbrechung der Menstruation kommen; normalerweise normalisiert sich dies jedoch wieder nach ein paar Monaten (86). Veränderungen in der Sexualfunktion können sich erheblich auf die Lebensqualität von Querschnittgelähmten auswirken (69, 82). Die psychologischen und sozialen Aspekte der Sexualität werden in Kapitel 6 behandelt. Die Wiederaufnahme der sexuellen Aktivität hat für Menschen mit QSL eine hohe Priorität. Laut einer webbasierten Studie zur Bestimmung der Auswirkungen von QSL auf die Sexualfunktion waren die wichtigsten Gründe dafür, warum Menschen sexuell aktiv sein möchten Intimität, sexuelle Bedürfnisse, Selbstwertgefühl und der Wunsch, den Partner nicht zu verlieren (69). Sexualität wird im Zusammenhang mit Rehabilitation o übersehen, da sich Gesundheitsfachleute beim Ansprechen des emas unwohl fühlen könnten und eventuell nicht über das nötige Fachwissen und die nötige Kompetenz verfügen (82). Das Management von Sexualfunktionen erfordert respektvolles Diskutieren zum richtigen Zeitpunkt unter Einbeziehung der betro enen Person und des Partners/der Partnerin. Die Maßnahmen zur medizinischen Versorgung und Rehabilitation müssen auf den Betro enen
Management von Sexualfunktionen und reproduktiver Gesundheit
Querschnittlähmung – Internationale Perspektiven
… Fortsetzung Prognosen für funktionale Ergebnisse bei kompletter Tetraplegie Maßnahme Ankleiden der unteren Gliedmaßen C1–4 unselbständig C5 unselbständig C6 Unterstützung notwendig C7 Unterstützung notwendig bis selbständig mit einstellbarer Ausrüstung Unterstützung notwendig bis selbständig mit unterstützenden Technologien Unterstützung notwendig bis selbständig selbständig C8 – Th1 gewöhnlich selbständig
Baden
unselbständig
unselbständig
Mobilität im Bett Gewichtsverlagerung
unselbständig
Unterstützung notwendig Unterstützung notwendig, außer im Elektrorollstuhlmit elektrischer Kippfunktion oder Neigemechanik Unterstützung notwendig
Unterstützung notwendig bis zu selbständig mit unterstützenden Technologien Unterstützung notwendig selbständig
selbständig mit unterstützenden Technologien
selbständig
selbständig im Elektrorollstuhlmit elektrischer Kippfunktion oder Neigemechanik unselbständig
selbständig
Transfers
Antrieb des Rollstuhls
Selbständig im Elektrorollstuhl; unselbständig im manuellen Rollstuhl
Autofahren
unselbständig
Selbständig im Elektrorollstuhl; selbständig bis zu einem gewissen Grad im manuellen Rollstuhl mit Anpassungen auf ebenen Flächen selbständig mit Anpassungen Th2–9
Unterstützung notwendig bis selbständig auf ebenen Flächen selbständig mit manuellem Rollstuhl auf ebenen Flächen
Selbständig mit oder ohne Transferbrett bei ebenen Flächen selbständig in manuellem Rollstuhl ausser in Kurven und auf unebenem Gelände selbständig mit Anpassungen
selbständig
selbständig
selbständig mit Anpassungen Th10–L2 selbständig
selbständig mit Anpassungen L3–S5 selbständig
Prognosen für funktionale Ergebnisse bei kompletter Paraplegie Alltägliche Aktivitäten (Körperpflege, Essen, Ankleiden, Baden) Darm und Blase Transfers Gehen selbständig
selbständig selbständig nur zur Bewegung und mit Hilfe von Orthesen und Krücken/ Rollator
selbständig selbständig im Haus mit Orthesen; draussen mit Orthesen und Krücken
selbständig selbständig möglicherweise mit Orthesen und/oder Krücken/Stock
Terms: Unselbständig – die querschnittgelähmte Person ist auf eine andere Person angewiesen, die die Aufgabe für sie ausführen kann. Unterstützung notwendig – die querschnittgelähmte Person kann die Aktivität ausführen, wenn sie von einer anderen Person Unterstützung bekommt. Der Grad der Unterstützung kann von minimal über mäßig bis hoch reichen. Selbständig – die querschnittgelähmte Person kann die Aufgabe mit oder ohne unterstützende Technologien und ohne jegliche Form der persönlichen Unterstützung ausführen. Quelle: Übernommen aus (87 ) mit der Erlaubnis von Wolters Kluwer und Lippincott Williams & Wilkins.
88
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
Verlust von Funktionsfähigkeit zu kompensieren. Eine Auswahl der Maßnahmen wird im folgenden Abschnitt beschrieben. Übungen zur Verbesserung, Wiederherstellung oder zum Erhalt von Körperfunktionen: Übungen zur Verbesserung der Muskelkra und Funktionen in den oberen Gliedmaßen zählen zu den wichtigsten Rehabilitationsmaßnahmen und können Behandlungsmethoden beinhalten wie intensives Training („massed practice“ – sich schnell wiederholende Bewegungen) und elektrische Stimulation (19, 88–90). Maßnahmen für die unteren Gliedmaßen beinhalten: passive und aktive Übungen zur Dehnung, Beweglichkeit und Stärkung; elektrische Stimulation von Muskeln sowie verschiedene Formen von Gehtraining mit Hilfe von unterstützenden Technologien wie Orthesen, Krücken, Rollatoren und Parallelbarren (13, 19, 91, 92). Solche Übungen sind wichtig für Querschnittgelähmte aufgrund mehrerer psychologischer und physiologischer Vorteile. Hierzu zählen unter anderem Muskelstärke und Ausdauer, vermindertes Au reten von spastischen Lähmungen, verbesserte Beweglichkeit der Gelenke, weniger Schmerzen und verbesserte kardiovaskuläre Fitness (93–95). Neue Strategien und Techniken vermitteln: Rehabilitation bietet Unterstützung und Begleitung für Menschen, neue und alternative Möglichkeiten des Sporttreibens zu erlernen und zu beherrschen. Eine große Bandbreite von alternativen Strategien und Techniken kann von Querschnittgelähmten angewendet werden, um Einschränkungen in Aktivitäten zu minimieren. Dies beinhaltet beispielsweise das Erlernen neuer Methoden des Ankleidens, bei denen Restmuskelfunktionen verwendet werden, das Tragen von Kleidung, die das Ankleiden erleichtert; die Nahrungsaufnahme mit Hilfe von angepasstem Besteck, um Selbständigkeit zu ermöglichen; das Ändern von Gewohnheiten ( z. B. Gewohnheiten der Körperp ege), um eine maximale E zienz zu gewährleisten und Energie zu sparen sowie die Umverteilung von Aufgaben auf andere Personen,
sofern angebracht. Eine erfolgreiche Rehabilitation stellt sicher, dass es den Betro enen möglich ist, ihr erlerntes Wissen auf andere Bereiche zu übertragen. Es ist deshalb wichtig, dass es Möglichkeiten gibt, neue Strategien und Techniken außerhalb der erapieumgebung anzuwenden, z. B. zu Hause oder in der Gemeinscha . Bereitstellung von unterstützenden Technologien (einschließlich Anpassung an die persönliche Umwelt des Betro enen): Unterstützende Technologien sind ein wichtiges Element der Rehabilitation. Sie sind für Querschnittgelähmte essenziell, da sie es Betro enen ermöglichen, alltägliche Aktivitäten wie Essen, Anziehen und Fortbewegen mit mehr Unabhängigkeit auszuführen. Durch Umweltmodi kationen können auf ähnliche Weise Barrieren für die Funktionsfähigkeit beseitigt werden; sie sollten vor der Entlassung in Betracht gezogen werden, wie später in Kapitel 7 näher erörtert wird. Benutzer und Betreuer müssen darin geschult werden, die unterstützenden Technologien richtig Instand zu halten und einzusetzen. Bei geschulten Rollstuhlfahrern beispielsweise, ist die Wahrscheinlichkeit größer, dass sie bessere funktionale Ergebnisse und Zufriedenheit angeben (96). Die Bereitstellung von adäquaten unterstützenden Technologien gibt Menschen mit QSL mehr Möglichkeiten und kann zu einer bedeutenden Steigerung der Selbständigkeit und Teilhabe in allen Lebensbereichen führen, z. B. Schule/Studium, Arbeit und Freizeit. Abwägung von chirurgischen Eingri en: Wenn keine weiteren neurologischen oder funktionalen Verbesserungen in den oberen Gliedmaßen mehr zu erwarten sind, kann eine Rekonstruktion eine Möglichkeit darstellen. Dies gilt jedoch nicht für alle Menschen mit QSL und für viele steht diese Option nicht zur Verfügung (97). Ein chirurgischer Eingri kann die Verp anzung von einem oder mehreren Muskeln oder Sehnen zur Verbesserung der Ellenbogenoder Handgelenk-Streckung, dem Greifen mit der Hand oder den Fingern bewirken (13). Einer Operation folgt eine Phase der Immobilisierung, 89
Querschnittlähmung – Internationale Perspektiven
begleitet von spezi schen Übungen. Bei vielen Menschen mit einer QSL auf Höhe der Halswirbelsäule haben Operationen zu einer Verbesserung der Bewegung und Funktionsfähigkeit der oberen Gliedmaßen geführt; individuelle Unterschiede in den Gegebenheiten müssen jedoch berücksichtigt werden sowie auch die Vor- und Nachteile einer Operation und die Verfügbarkeit einer angemessenen Rehabilitation (89, 98, 99).
Während der Phase nach der Verletzung erfahren Betro ene und ihre Familien o Trauer und eine Reihe von Emotionen wie Verleugnung, Traurigkeit, Angst, Frustration oder Wut wenn sie mit dem Prozess der Anpassung beginnen. Letzteres wird in Kapitel 6 näher beleuchtet. Personenbezogene Faktoren – einschließlich Geschlecht, Alter, Persönlichkeit, Bewältigungsstrategie – sowie prämorbide mentale Gesundheitsprobleme (z. B. Depression, Angst, Alkohol- oder Suchtmittelmissbrauch) und damit assoziierte Erkrankungen wie die post-traumatische Belastungsstörung (PTBS) haben einen Ein uss darauf, wie gut sich einzelne Betro ene an die Situation nach der Verletzung anpassen können. Umweltbezogene Faktoren – einschließlich kultureller Au assungen und Werte, Einstellungen, Unterstützung durch die Gesellscha , Bereitstellung angemessener unterstützender Technologien sowie der sozioökonomische Status – haben ebenfalls einen Ein uss auf den Anpassungsprozess (13, 48, 100 –104). Depression ist ein häu g vorkommendes mentales Gesundheitsproblem, an welchem Querschnittgelähmte insbesondere in der Phase nach der Verletzung leiden können. Die Schätzung einer kürzlich durchgeführten Studie ergab, dass 20–30% der Querschnittgelähmten klinisch bedeutsame Symptome von Depression zeigen (105). Depression kann weitreichende Konsequenzen für sowohl die Betro enen als auch für deren Familienmitglieder sowie für Gesundheitssysteme haben. Depression steht 90
Management von mentalen Gesundheitsproblemen
in Verbindung mit geringeren Fortschritten hinsichtlich Funktionsfähigkeit, mehr gesundheitlichen Komplikationen wie Dekubitus und HWI, hohen Selbstmordraten, erhöhten Hospitalisierungsraten und höheren medizinischen Kosten (101, 104, 106). Mentale Gesundheitsprobleme wie Depression werden o als natürliche Folge von QSL betrachtet und werden deshalb unzureichend thematisiert (101). Das Management während des Anpassungsprozesses erfordert eine frühe Diagnose und Bewertung, eine frühzeitige Bereitstellung von Managementmaßnahmen wie Au lärung, Informationen über verfügbare Unterstützungsdienste und Ressourcen, Beratung und unter Umständen Medikamente sowie eine anhaltende langfristige Überwachung (13, 48, 104, 106, 107). Peer Mentoring und Unterstützung entwickelt sich zu einer wichtigen Komponente von Rehabilitationsprogrammen für Menschen mit QSL und wissenscha liche Daten belegen, dass Peer Mentoring zu einer besseren Anpassung und Funktionsfähigkeit beiträgt (108–111).
Unterstützende Technologie Der Begri „unterstützende Technologie“ und andere Begri e im Zusammenhang damit werden in Kasten 4.1 de niert.
Bedarf an unterstützender Technologie
Der Bedarf an unterstützender Technologie beginnt normalerweise mit dem Eintreten einer QSL und besteht während der gesamten Lebensdauer des Betro enen. Welche Art der unterstützenden Technologie benötigt wird, hängt ab vom Grad der QSL und den damit verbundenen Beeinträchtigungen, Umweltfaktoren (z. B. physische Umwelt, Unterstützung, Beziehungen) und personenbezogenen Faktoren (z. B. Alter, Fitness, Lebensweise) und gegebenenfalls bestehenden sekundären Gesundheitsproblemen. Rollstühle, Umweltkontrollsysteme und Computertechnologie scheinen die am weitest
Querschnittlähmung – Internationale Perspektiven
… Fortsetzung Aktivitätsbereiche Beispiele Weitere Gehhilfen: u. a. Krücken, Stöcke und Rollator Rollstühle: Manuelle (selbstangetrieben oder von einer Begleitperson, drei- oder vierrädrig sowie Elektrorollstühle (kopf-, kinn- oder handgesteuert), von Hand angetriebene Dreiräder und Roller. Zweck/Nutzen Gehhilfen bieten zusätzliche Stabilität beim Gehen zur Kompensierung von Muskelschwächen, Koordinationsschwierigkeiten und Gleichgewichtsstörungen. Rollstühle kommen zum Einsatz, wenn die Kraft in den unteren Gliedmaßen nicht zum Gehen ausreicht. Sie können an ein großes Spektrum von Bewegungsvermögen angepasst werden (122). Manuelle Rollstühle können z. B. mit Hilfe der Arme bewegt werden, während Elektrorollstühle durch minimale Fingerbewegungen eines Steuerungsknüppels oder sogar durch Kontrolle mit dem Kopf von Personen bedient werden können (123), die ihre Hände nur unzureichend bewegen können. Transferhilfen ermöglichen es Betreuern, Querschnittgelähmten bei der Änderung der Körperposition sowie beim Transfer von einem Platz zum nächsten zu helfen und minimieren das Verletzungsrisiko beiderseits. Sitz- und Positionierungssysteme sollen die optimale Funktionsfähigkeit im Alltag erleichtern, Kontrakturen und Deformationen durch den Erhalt von Gelenkmobilität und Muskellänge verhindern sowie Hautschäden und Dekubitus vorbeugen (46, 48, 124).
Transfer Hilfen: Rutsch-, Transfer-, und Hebehilfen.
Sitz- und Lagerungssysteme: Sie beinhalten angepasste Sitzformen, Kissen zur Druckentlastung und für bequemes Sitzen, Stützen für Kopf, Brustkorb, Schambein, Hüften und Beine, Stehtische sowie Positionierungsgurte. Orthesen für die oberen Gliedmaßen: Schienen zur Unterstützung von Schulter, Ellenbogen, Handgelenk und/oder Hand. Beispiele beinhalten Fixierungsschienen, Tenodese-Schienen (unterstützen das Handgelenk und ermöglichen funktionelles Greifen), kurze Handschienen und Funktionsschienen (Essen, Schreiben, Tastaturschreiben).
Statische (fixierte) Schienen ermöglichen eine Positionierung der Hand, um Kontrakturen und Deformierungen zu vermeiden. Dynamische (bewegliche) Schienen unterstützen schwache oder gelähmte Muskeln und verbessern dadurch die Handfunktion und Funktion der oberen Gliedmaßen. Eine über das Handgelenk bewegbare Orthese für Handgelenk und Hand (oder eine Gelenkbeuge-Orthese) ermöglicht es Personen mit schwachen Fingern mit Hilfe von Handgelenkskraft zu greifen. Es konnte eine bedeutende Verbesserung der Handfunktion bei Personen mit C5, C6 oder C7 Verletzungen beobachtet werden (125). Eine mobile Armstütze kann an einem Tisch oder Rollstuhl fixiert werden und so das Eigengewicht des Arms stützen und gleichzeitig eine horizontale Bewegung ermöglichen. Dies ermöglicht der betroffenen Person, Aufgaben wie Essen, Körperhygiene und Schreiben auszuführen (126). Autofahren und Verkehrsmittel: Dazu Querschnittgelähmte sehen Verkehrsmittel oft als gehören Kleinbusse mit Rampen oder großes Hindernis an. Autofahren und angepasste Liftsysteme zur Verstauung eines Fahrzeuge erleichtern die Wiedereingliederung in die Rollstuhls; individuell angepasste Gemeinschaft sowie den Zugang zu Arbeit und zu Handsteuerung von Motorfahrzeugen Gesundheitsversorgungsdiensten und erzielen geringe zur Beschleunigung, zum Bremsen und gesundheitsbedingte Verbesserungen der LebensquaUmkehren sowie Zubehör wie Türöffner, lität (127 ). Griffe und Schwingstühle zur Unterstützung beim Transfer.
Fortsetzung auf der nächsten Seite …
92
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
… Fortsetzung Aktivitätsbereiche Kommunikation Dieser Bereich beinhaltet alle Aktivitäten in Bezug auf Kommunikation wie Botschaften empfangen und versenden und an Gesprächen teilnehmen (4). Auf Informationen jeglicher Art zugreifen wird auch als Kommunikation betrachtet. Beispiele Kommunikationsgeräte werden oft als „unterstützte Kommunikation “ bezeichnet und beinhalten Kommunikationstafeln, Sprachverstärker, Sprechventile, elektronische Sprachausgabegeräte und Computersprachprogramme mit Blick- oder Kopferfassungstechnologie Computertechnologie: Beispiele umfassen alternative Eingabegeräte wie Joysticks und Touch Screens, über welche der Cursor auf dem Bildschirm gesteuert werden kann (128); erweiterte und abgeänderte Tastaturen; Steuerungen mittels Kontrolle des Mundes; Schalter für die Spracheingabe (129); Blickeingabesysteme, die die Augenbewegungen zur Auswahl von Feldern einer Bildschirmtastatur verarbeiten sowie die Gehirnwellentechnologie, die auf die Anregung von α Wellen reagiert zum Treffen einer Auswahl (130). Baden und Duschen: Duschstühle, Badestühle, Transferhilfen, Griffstangen, Badehandschuhe, langgriffige Badeschwämme und –Bürsten. Körperpflege und Hygiene: Haarbürsten, Zahnbürsten, Rasierer, Spiegel mit Griffverdickungen, verlängerten oder gewinkelten Griffen. Zur Toilette gehen: Bettpfannen, Toilettenstühle, angepasste Toilettensitze. Ankleiden: Anziehhilfen, Knöpfhilfen, Reißverschlussschlaufen, langgriffige Anziehhilfen für Socken, Strümpfe und Schuhe. Essen und Trinken: Teller und Schüsseln mit erhöhten Rändern; Besteck mit Griffverdickungen, beschwerten und gebogenen Griffen; Tassen mit Deckeln, Trinkhalme, angepasste Griffen oder mit zwei Griffen. Zweck/Nutzen QSL mit einem hohen Läsionsniveau beeinflusst die Atmungsmuskulatur und kann eine mechanische Beatmung über einen Luftröhrenschnitt erforderlich machen. Sprechventile können Betroffenen mit einer Tracheotomie beim Sprechen helfen. Wenn das Sprachvermögen nur unzureichend oder gar nicht vorhanden ist, ermöglicht unterstützte Kommunikation es den Betroffenen, sich auszudrücken. Computertechnologie ermöglicht den Zugang zu Informationen im Internet, bietet eine Alternative zu herkömmlichen Kommunikationswegen und ermöglicht die Teilhabe an Bildung, Arbeit und Freizeit.
Selbstversorgung Dieser Bereich umfasst Aktivitäten in Bezug auf die eigene Versorgung wie z. B. Waschen, Körperpflege, zur Toilette gehen, Anziehen, Essen und Trinken.
Vorrichtungen zur Selbstversorgung ermöglichen es Menschen mit einer eingeschränkten physischen Funktionsfähigkeit (Schwierigkeiten mit dem Oberund Unterkörper), sich mit wenig oder gar keiner Unterstützung selbst zu versorgen. Ein schwacher Griff, unzureichende Koordination oder eine eingeschränkte Beweglichkeit werden dabei kompensiert und ermöglichen es einer Person, sich zu bewegen und Gegenstände zu bedienen. Ein adäquates Management von Selbstversorgungsaktivitäten ist für die Betroffenen essenziell, die in ihre sozialen Rollen in der Schule oder bei der Arbeit zurückkehren. Hilfsmittel wie Spiegel spielen eine wichtige Rolle bei der Früherkennung von Dekubitus.
Fortsetzung auf der nächsten Seite … 93
Querschnittlähmung – Internationale Perspektiven
… Fortsetzung Aktivitätsbereiche Häusliches Leben Dieser Bereich beinhaltet Aktivitäten in Bezug auf häusliche und alltägliche Handlungen und Aufgaben wie das Zubereiten von Mahlzeiten und Hausarbeit. Beispiele Es gibt weitreichende Beispiele, u. a. Anti-Rutsch Matten, um zu verhindern, dass Teller und Schneidebretter rutschen; angepasste Schneidebretter, die die Nahrungsmittel während des Schneidens stabilisieren, Kochzubehör mit gewinkelten und dadurch bequemen Griffen; Glas- und Flaschenöffner; Kippvorrichtungen am Wasserkocher; Hahn- und Schalterdrehhilfen. Wo Essen über dem offenen Feuer oder auf dem Boden gekocht wird, können niedrige Rollwagen zum Bewegen von Gegenständen, Töpfen und Pfannen, die nicht umkippen und Griffe, um heiße Gegenstände zu schieben oder zu ziehen, hilfreich sein. Beispiele sind: Fernbedienungen und spezielle Anpassungen an Schaltern, um sie bedienbar zu machen (z. B. Schalter, die durch Kopfposition, Kinn, Augenbrauen oder die Atmung aktiviert werden können). Zweck/Nutzen Die Technologien ermöglichen Personen mit einer eingeschränkten physischen Funktionsfähigkeit (Probleme mit Ober- und Unterkörper) häusliche Aktivitäten mit wenig oder gar keiner Unterstützung zu auszuführen.
Sonstiges Umweltkontrolleinheiten
Menschen mit Querschnittlähmung können ihre Fähigkeit, Geräte wie TV, Computer, Telefon, Beleuchtung und Türen in ihrer persönlichen Umwelt zu bedienen, verlieren. Umweltkontrollsysteme ermöglichen es ihnen, diese Kontrolle wiederzugewinnen (131).
Zugang zu einer Vielfalt an unterstützenden Technologien kann Querschnittgelähmte dazu befähigen, alltägliche Aktivitäten auszuführen, die sie anderweitig nicht bewältigen könnten (115, 117, 126, 132–135). Unterstützende Technologie kann Querschnittgelähmte dabei unterstützen, autonomer und unabhängiger im Alltag zu sein. Rollstühle beispielsweise ermöglichen es Querschnittgelähmten, sich mobil in ihrem persönlichen Umfeld zu bewegen (136). Umweltkontrollsysteme können es ihnen ermöglichen, die Kontrolle über Geräte und ihre persönliche Umwelt wie Fernseher, Computer, Telefon, Beleuchtung und Türen wieder zu erlangen (131). Eine kanadische Studie hat gezeigt, dass Personen, die Umweltkontrollsysteme verwendeten, eine größere Funktionsfähigkeit bei 75% der Aufgaben in Bezug auf den Alltag zeigten, 94
Auswirkung unterstützender Technologie
was sich vom psychosozialen Aspekt her sehr positiv auf deren Leben auswirkte (137). Die Verwendung von unterstützender Technologie steht in Bezug zu einer verstärkten Teilhabe am Gemeinscha sleben sowie am gesellscha lichen und zivilen Leben (138–140). Unterstützende Technologie kann eine entscheidende Rolle für Kinder mit QSL bei der Lernförderung und –entwicklung spielen (141) sowie von Bedeutung sein in Bezug auf Mobilität, Bildung und soziales Engagement (142). Unterstützende Technologie trägt zu erfolgreichen Beschä igungsergebnissen bei (117) und kann dazu beitragen, die Reintegration und Eingliederung von Querschnittgelähmten in der Gesellscha zu sichern (122 , 133). Unterstützende Technologie kann auch die Lebensqualität verbessern. So haben Studien z. B. gezeigt, dass die Verwendung von Umweltkontrollsystemen positive Auswirkungen auf die
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
Wahrnehmung der Nutzer über deren Kompetenz, Anpassungsfähigkeit und Selbstwertgefühl haben (137, 143) und einen höheren Zufriedenheitsgrad in Bezug auf die Lebensqualität zur Folge haben können verglichen mit Personen, die diese Systeme nicht verwenden (144). Querschnittgelähmte, die keine unterstützenden Technologien verwenden, können Einschränkungen in der Funktionsfähigkeit sowie eine erhöhte Abhängigkeit in Bezug auf die Unterstützung durch andere Personen erfahren (144). Unterstützende Technologie kann den Grad der Abhängigkeit von Betreuern reduzieren (145) und die Zeit und physische Belastung der Betreuer verringern (132), wie Betreuer von Kindern mit einer neuromuskulären Krankheit in Guatemala berichteten (139). Wirtscha liche Vorteile in Zusammenhang mit unterstützenden Technologien umfassen die Senkung von Kosten durch Betreuung in der Familie wie Gehaltsverlust und Kosten für formelle Unterstützungsdienste (44, 132, 146, 147).
Gesundheitserhaltung Wie in Kapitel 2 beschrieben, ist die Lebenserwartung von Querschnittgelähmten über die Jahre konstant gestiegen dank der Fortschritte in der Medizin und des Zugangs zu medizinischer Versorgung, Rehabilitation und Unterstützungssystemen (148–150).Während sich die Lebenserwartung in den Industrieländern langsam der Lebenserwartung der allgemeinen Bevölkerung annähert, tri dies in den Entwicklungsländern noch lange nicht zu. Hier bleiben die Morbiditätsund Sterblichkeitsraten sehr wahrscheinlich hoch, wenn nicht verstärkt investiert wird. Daten belegen, dass Menschen mit Behinderungen als Population betrachtet schlechtere Ergebnisse in Bezug auf die Gesundheit erzielen als die allgemeine Bevölkerung (44). Dies tri auch auf Querschnittgelähmte zu, die einen o mals sogenannten „engeren oder schmäleren“ Gesundheitsspielraum haben. Dies hängt stark von der Querschnittlähmung selbst ab, d. h. von
der Schwere und Höhe der Verletzung (150). Wie zuvor erwähnt, unterliegen Querschnittgelähmte dem Risiko von Sekundärerkrankungen wie Lungenentzündung, Dekubitus und HWI (49, 151). Diese Erkrankungen machen o einen Krankenhausaufenthalt notwendig und können ebenfalls für erhöhte P egekosten, verminderte Arbeitsfähigkeit, verminderte Lebensqualität und eine geringere Lebenserwartung verantwortlich sein (49, 152–155). Querschnittgelähmte sind ebenfalls dem Risiko der gleichen chronischen Krankheiten ausgesetzt wie die allgemeine Bevölkerung (156 –160). Ischämische Herzerkrankung wurde als führende Todesursache bei der australischen QSL-Population identi ziert, mit einer deutlich höheren Rate als die der Allgemeinbevölkerung (157). Chronische Krankheiten stehen bei Querschnittgelähmten in Zusammenhang mit Veränderungen der Körperzusammensetzung, wie beispielsweise einer Verringerung der Muskelmasse und einer Zunahme des Fettgewebes, weniger Aktivität aufgrund der Lähmung, vegetativen Funktionsstörungen und einem veränderten Sto wechsel (152, 156, 158, 161). Es kann ein Bezug zu weiteren Risikofaktoren bestehen. Zu diesen Risikofaktoren zählen eine unausgewogene Ernährung sowie Tabak- und Alkoholkonsum, die bei Querschnittgelähmten verstärkt vorkommen können (159, 162, 163). In Bezug auf die langfristige Erhaltung der Gesundheit von Querschnittgelähmten muss Folgendes in Betracht gezogen werden: (i) sie sind Gesundheitsrisiken ausgesetzt, die speziell mit der QSL in Verbindung stehen und benötigen deshalb fortwährend Zugang zu sowohl allgemeinen als auch speziellen Diensten (151); (ii) Querschnittgelähmte unterliegen hinsichtlich der Gesundheitsprobleme ganz ähnlichen Risiken wie der Rest der Bevölkerung. Zu den benötigten Dienstleistungen gehören deshalb Gesundheitsförderung, Prävention (Impfungen, Vorsorgeuntersuchungen), Behandlung von akuten und chronischen Krankheiten (44). Regelmäßige körperliche Aktivitäten haben einen positiven 95
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
… Fortsetzung Gesundheitsbereich Sexual- und Fortpflanzungsfunktionen Haut Maßnahme Durchführung eines Pap-Abstrichs und gynäkologische Untersuchung bei Frauen. Durchführung einer Mammographie bei Frauen. Angebot von Schulungen zur täglichen Hautüberprüfung. Bereitstellung von Rat über angemessene Ernährung. Bereitstellung von Schulungen über die regelmäßige Veränderung der Körperhaltung (alle zwei Stunden). Regelmäßige Überprüfung von unterstützender Technologie, um eine angemessene Passform und Funktionsfähigkeit sicherzustellen (z. B. Rollstuhl/Sitzsysteme).
Quellen (47, 76, 95, 152, 156, 157, 159, 164).
Schlussfolgerung und Empfehlungen Die Bereitstellung von angemessener und zeitnaher medizinischer Versorgung und Rehabilitation (einschließlich unterstützender Technologie) kann einen deutlichen positiven Ein uss auf die Mortalität, Morbidität und Behinderung von Querschnittgelähmten haben. Zugang zu sowohl einer speziellen als auch herkömmlichen Gesundheitsversorgung kann zu besseren Ergebnissen und einem produktiven und genussvollen Leben von Querschnittgelähmten führen. Es soll an dieser Stelle hervorgehoben werden, dass dieses Kapitel lediglich eine breite Übersicht über die Gesundheitsbedürfnisse von Querschnittgelähmten geben soll. Sollte Bedarf an einer umfassenden klinischen Empfehlung bestehen, sollte man auf Peer-Review-Zeitschriften, medizinische Fachbücher und Fachbücher der Rehabilitation sowie Handbücher und Richtlinien zurückgreifen und den Rat von relevanten Gesundheitsfachkrä en und Berufsorganisationen suchen. Zudem sollten diese Besonderheiten des jeweiligen Landes und Kontextes berücksichtigt werden. In Kapitel 5 wird untersucht, was einzelne Länder machen können, um die Kapazitäten ihres Gesundheitssystems zu verbessern und den Bedürfnissen von Querschnittgelähmten
nachzukommen. Gemäß der Analyse der Gesundheitsbedürfnisse von Querschnittgelähmten in Kapitel 4 ergeben sich für Politik und Praxis die folgenden Aufgaben: ■ Es muss einen unmittelbaren Zugang zu spezialisierten Gesundheitsversorgungsdiensten direkt nach dem Eintritt der Verletzung geben, um komplexe Probleme im Zusammenhang mit QSL zu behandeln und die neurologische Funktionsfähigkeit so weit wie möglich zu erhalten. ■ Der Zugang zu Rehabilitation sollte so früh wie möglich zur Verfügung stehen, d. h. während der Akutphase der Verletzung, und sollte kontinuierlich bereitstehen, um funktionale Ergebnisse zu optimieren und die Wiedereingliederung in die Gesellschaft zu erleichtern. ■ Der Zugang zu einem Spektrum von unterstützenden Technologien trägt zur leichteren Anpassung an Veränderungen bei und maximiert die Selbständigkeit. ■ Es sollten Nachsorgeuntersuchungen angeboten werden, um etwaige Probleme nach der Entlassung aus der Rehabilitation anzugehen, insbesondere in den ersten zwölf Monaten nach der Verletzung. ■ Es muss berücksichtigt werden, dass Querschnittgelähmte ein erhöhtes Risiko für sekundäre Erkrankungen wie beispielsweise Lungenentzündung, HWI und Dekubitus 97
Querschnittlähmung – Internationale Perspektiven
■ ■
■
tragen und deshalb Zugang zu einer dauerhaften, allgemeinen und spezialisierten medizinischen Versorgung benötigen. Querschnittgelähmte benötigen Zugang zu allgemeinen Gesundheitsdiensten – einschließlich Gesundheitsförderung, Prävention und medizinische Versorgung – zur Bekämpfung von akuten und chronischen Krankheiten, an denen auch die übrige Bevölkerung erkrankt. Ein koordinierter, integrierter und multidisziplinärer Ansatz, der Querschnittgelähmte und ihre Familienangehörigen
■
■
einschließt, fördert den sanften Übergang zwischen einer stationären, ambulanten und gemeindenahen Pf lege. Querschnittgelähmte und ihre Familienangehörigen müssen aufgeklärt und befähigt werden, um sicherzustellen, dass sie in der Lage sind, so gut wie möglich auf ihre eigene Gesundheit zu achten. Es muss kontinuierlich klinisch geforscht werden, um die bestmöglichen Rehabilitationsmaßnahmen zur Wiederherstellung einer kontextübergreifenden Funktionsfähigkeit zu bestimmen.
Quellen 1. 2. 3. 4. 5. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). Kirshblum SC et al. International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 2011, 34:535-546. doi: http://dx.doi.org/10.1179/204577211X13207446293695 PMID:22330108 Alexander MS et al. International standards to document remaining autonomic function after spinal cord injury. Spinal Cord, 2009, 47:36-43. doi: http://dx.doi.org/10.1038/sc.2008.121 PMID:18957962 WHO. International classification of functioning, disability and health. Geneva, World Health Organization, 2001. Krassioukov A et al. A systematic review of the management of orthostatic hypotension after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:876-885. doi: http://dx.doi.org/10.1016/j.apmr.2009.01.009 PMID:19406310 Consortium for Spinal Cord Medicine. Autonomic dysreflexia: what you should know. Washington, DC, Paralyzed Veterans of America, 1997. Krassioukov A et al. Autonomic dysreflexia following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–33 (http://www.scireproject. com/rehabilitation-evidence, accessed 25 April 2012). Teasell RW et al. Venous thromboembolism following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). Geerts WH et al. Prevention of venous thromboembolism: American College of Chest Physicians evidence-based clinical practice guidelines, 8th ed. Chest, 2008, 133(6):381S–453S. Illman A, Stiller K, Williams M. The prevalence of orthostatic hypotension during physiotherapy treatment in patients with an acute spinal cord injury. Spinal Cord, 2000, 38:741-747. doi: http://dx.doi.org/10.1038/sj.sc.3101089 PMID:11175374 Claydon VE, Krassioukov A. Orthostatic hypotension and autonomic pathways after spinal cord injury. Journal of Neurotrauma, 2006, 23:1713-1725. doi: http://dx.doi.org/10.1089/neu.2006.23.1713 PMID:17184183 Krassioukov A et al. Orthostatic hypotension following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–20. (http://www.scireproject. com/rehabilitation-evidence, accessed 25 April 2012). Bryce T. Spinal Cord Injury. New York, Demos Medical, 2010. Cardenas DD et al. Impact of urinary tract infection educational program in persons with spinal cord injury. The Journal of Spinal Cord Medicine, 2004, 27:47-54. PMID:15156937 Consortium for Spinal Cord Medicine. Bladder management for adults with spinal cord injury: a clinical practice guideline for health-care providers. Washington, DC, Paralyzed Veterans of America, 2006. Wolfe DL et al. Bladder health and function following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012).
6. 7.
8.
9. 10. 11. 12.
13. 14. 15. 16.
98
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
17.
18.
19. 20. 21. 22. 23. 24.
25. 26.
27. 28. 29.
30. 31.
32. 33. 34. 35. 36. 37. 38. 39.
40.
National Institute on Disability and Rehabilitation Research. The prevention and management of urinary tract infections among people with spinal cord injuries. National Institute on Disability and Rehabilitation Research Consensus Statement. January 27−29 1992. The Journal of the American Paraplegia Society, 1992, 15:194-204. PMID:1500945 Hsieh JTC et al. Spasticity following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). Harvey L. Management of spinal cord injury: a guide for physiotherapists. London, Elsevier, 2008. Katalinic OM et al. Stretch for the treatment and prevention of contractures [review]. Cochrane database of systematic reviews (Online), 2010, (9):CD007455. PMID:20824861 Ashe MC et al. Bone health following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–26. Craven BC et al. Detection and treatment of sublesional osteoporosis among patients with chronic spinal cord injury: proposed paradigms. Topics in Spinal Cord Injury Rehabilitation, 2009, 14:1-22. doi: http://dx.doi.org/10.1310/sci1404-1 Eser P et al. Bone loss and steady state after spinal cord injury: a cross-sectional study using pQCT. Journal of Musculoskeletal & Neuronal Interactions, 2004, 4:197-198. PMID:15615125 Frey-Rindova P et al. Bone mineral density in upper and lower extremities during 12 months after spinal cord injury measured by peripheral quantitative computed tomography. Spinal Cord, 2000, 38:26-32. doi: http://dx.doi.org/10.1038/ sj.sc.3100905 PMID:10762194 Biering-Sørensen F et al. Non-pharmacological treatment and prevention of bone loss after spinal cord injury: a systematic review. Spinal Cord, 2009, 47:508-518. doi: http://dx.doi.org/10.1038/sc.2008.177 PMID:19172152 Teasell RW et al. Heterotopic ossification following spinal cord injury. Syringomyelia following spinal cord injury. In: Eng JJ et al, eds. Spinal cord injury rehabilitation evidence, version 4. Vancouver, SCIRE, 2012. (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). Winslow C, Rozovsky J. Effect of spinal cord injury on the respiratory system. American Journal of Physical Medicine & Rehabilitation, 2003, 82:803-814. doi: http://dx.doi.org/10.1097/01.PHM.0000078184.08835.01 PMID:14508412 Zimmer MB, Nantwi K, Goshgarian H. Effect of spinal cord injury on the respiratory sysem: basic research and current clinical treatment options. The Journal of Spinal Cord Medicine, 2007, 30:319-330. PMID:17853653 Sheel AW et al. Respiratory management. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence,Volume 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–46 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). Consortium for Spinal Cord Medicine. Respiratory management following spinal cord injury: a clinical practice guideline for health-care professionals. Washington, DC, Paralyzed Veterans of America, 2005. Onders RP. Complete worldwide operative experience in laparoscopic diaphragm pacing: results and differences in spinal cord injured patients and amyotrophic lateral sclerosis patients. Surgical Endoscopy, 2009, 23:1433-1440. doi: http://dx.doi. org/10.1007/s00464-008-0223-3 PMID:19067067 Brown R et al. Respiratory dysfunction and management in spinal cord injury. Respiratory Care, 2006, 51:853-868. PMID:16867197 Baastrup C, Finnerup N. Pharmacological management of neuropathic pain following spinal cord injury. CNS Drugs, 2008, 22:455-475. doi: http://dx.doi.org/10.2165/00023210-200822060-00002 PMID:18484790 Cardenas DD, Jensen M. Treatments for chronic pain in persons with spinal cord injury: a survey study. The Journal of Spinal Cord Medicine, 2006, 29:109-117. PMID:16739554 Dijkers M et al. Prevalence of chronic pain after traumatic spinal cord injury: a systematic review. Journal of Rehabilitation Research and Development, 2009, 46:13-29. doi: http://dx.doi.org/10.1682/JRRD.2008.04.0053 PMID:19533517 Bryce TN et al. International spinal cord injury pain classification: Part I: background and description. [Epub ahead of print] Spinal Cord, 2012, PMID:22182852 Bryce TN et al. International spinal cord injury pain (ISCIP) classification: Part 2: initial validation using vignettes. [Epub ahead of print]Spinal Cord, 2012, PMID:22310319 Finnerup NB, Baastrup C, Jensen TS. Neuropathic pain following spinal cord injury pain: mechanisms and treatment. Scandinavian Journal of Pain, 2009, 1 S1:S3-S11. doi: http://dx.doi.org/10.1016/S1877-8860(09)70003-5 Turner JA, Cardenas DD, Warms CA, McClellan CB. Chronic pain associated with spinal cord injuries: a community survey. Archives of Physical Medicine and Rehabilitation, 2001, 82:501-509. doi: http://dx.doi.org/10.1053/ apmr.2001.21855 PMID:11295011 Cardenas DD et al. Gender and minority differences in the pain experience of people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1774-1781. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.027 PMID:15520972
99
Querschnittlähmung – Internationale Perspektiven
41. Jensen MP et al. The impact of neuropathic pain on health-related quality of life: review and implications. Neurology, 2007, 68:1178-1182. doi: http://dx.doi.org/10.1212/01.wnl.0000259085.61898.9e PMID:17420400 42. Sawatzky B et al. Classification and measurement of pain in the spinal cord-injured population. Spinal Cord, 2008, 46:2-10. doi: http://dx.doi.org/10.1038/sj.sc.3102137 PMID:17968403 43. United States Congress. Assistive Technology Act. United States Congress 2004 (Public Law 108–364) (http://www.ataporg. org/summaryact.html, accessed 2 August 2011). 44. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf, accessed 10 May 2012). 45. WHO. Consensus conference on wheelchairs for developing countries, Bengaluru, India, 6−11 November 2006 http://www. who.int/disabilities/technology/Wheelchair%20Consensus%20Conference%20Report_Jan08.pdf, accessed 29 May 2012). 46. Consortium for Spinal Cord Medicine. Pressure ulcer prevention and treatment following spinal cord injury: a clinical practice guideline for health care professionals. Washington, DC, Paralyzed Veterans of America, 2000. 47. Regan M et al. Pressure ulcers following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4, Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 48. Tharion G et al. Guidelines for care of persons with spinal cord injury in the community. Vellore, Christian Medical College, 2009. 49. Cardenas DD et al. Etiology and incidence of re-hospitalization after traumatic spinal cord injury: a multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2004, 85:1757-1763. doi: http://dx.doi.org/10.1016/j.apmr.2004.03.016 PMID:15520970 50. Gélis A et al. Therapeutic education in persons with spinal cord injury: a review of the literature. Annals of Physical and Rehabilitation Medicine, 2011, 54:189-210. doi: http://dx.doi.org/10.1016/j.rehab.2011.03.004 PMID:21530443 51. Consortium for Spinal Cord Medicine. Early acute management in adults with spinal cord injury: a clinical practice guideline for health-care providers. Washington, DC, Paralyzed Veterans of America, 2008. 52. Bernhard M et al. Spinal cord injury (SCI): prehospital management. Resuscitation, 2005, 66:127-139. doi: http://dx.doi. org/10.1016/j.resuscitation.2005.03.005 PMID:15950358 53. Harris MB, Sethi RK. The initial assessment and management of the multiple-trauma patient with an associated spinal injury. Spine, 2006, 31:S9-S15. doi: http://dx.doi.org/10.1097/01.brs.0000217924.56853.0d PMID:16685243 54. WHO. Guidelines for essential trauma care. Geneva, World Health Organization, 2004. 55. WHO. Prehospital trauma care systems. Geneva, World Health Organization, 2005. 56. Fehlings MG et al. Early versus delayed decompression for traumatic cervical spinal cord injury: results of Surgical Timing in Acute Spinal Cord Injury Study (STASCIS). PLoS ONE, 2012, 7: doi: http://dx.doi.org/10.1371/journal. pone.0032037 PMID:22384132 57. Bagnall AM et al. Spinal fixation surgery for acute traumatic spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (1):CD004725. PMID:18254059 58. Fehlings M, Perrin R. The role and timing of early decompression for cervical spinal cord injury: update with a review of recent clinical evidence. Injury, 2005, 36:S13-S26. doi: http://dx.doi.org/10.1016/j.injury.2005.06.011 59. Fehlings MG. The timing of surgical intervention in the treatment of spinal cord injury: a systematic review of recent clinical evidence. Spine, 2006, 31:S28-S35. doi: http://dx.doi.org/10.1097/01.brs.0000217973.11402.7f PMID:16685233 60. Rechtine GR. Nonoperative management and treatment of spinal injuries. Spine, 2006, 31 Suppl:S22-S27. doi: http://dx.doi. org/10.1097/01.brs.0000217947.43730.a6 PMID:16685232 61. Wood K et al. Operative compared with nonoperative treatment of a thoracolumbar burst fracture without neurological deficit. A prospective, randomized study. The Journal of Bone and Joint Surgery, 2003, 85-A:773-781. PMID:12728024 62. Harrop JS et al. Neurological manifestations of cervical spondylosis: an overview of signs, symptoms, and pathophysiology. Neurosurgery, 2007, 60 Supp1 1;S14–S20. doi:10.1227/01.NEU.0000215380.71097.EC doi: http://dx.doi.org/10.1227/01. NEU.0000215380.71097.EC PMID:17204875 63. Vanichkachorn JS, Vaccaro AR. Thoracic disk disease: diagnosis and treatment. The Journal of the American Academy of Orthopaedic Surgeons, 2000, 8:159-169. PMID:10874223 64. NCC-C. Metastatic spinal cord compression: diagnosis and management of patients at risk of or with metastatic spinal cord compression. Cardiff, National Collaborating Centre for Cancer, 2008. 65. Lederle FA et al. Outcomes following endovascular vs open repair of abdominal aortic aneurysm: a randomized trial. Journal of the American Medical Association, 2009, 302:1535-1542. doi: http://dx.doi.org/10.1001/jama.2009.1426 PMID:19826022 66. Wang VY, Chou D, Chin C. Spine and spinal cord emergencies: vascular and infectious causes. Neuroimaging Clinics of North America, 2010, 20:639-650. doi: http://dx.doi.org/10.1016/j.nic.2010.07.006 PMID:20974380
100
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
67. Quiñones-Hinojosa A et al. General principles in the medical and surgical management of spinal infections: a multidisciplinary approach. Neurosurgical Focus, 2004, 17:E1-E15. PMID:15636566 68. Anderson KD. Targeting recovery: priorities of the spinal cord injured population. Journal of Neurotrauma, 2004, 21:13711383. doi: http://dx.doi.org/10.1089/neu.2004.21.1371 PMID:15672628 69. Anderson KD et al. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 2007, 45:328-337. PMID:17033620 70. Ditunno PL et al. Who wants to walk? Preferences for recovery after SCI: a longitudinal and cross-sectional study. Spinal Cord, 2008, 46:500-506. doi: http://dx.doi.org/10.1038/sj.sc.3102172 PMID:18209742 71. Snoek GJ et al. Survey of the needs of patients with spinal cord injury: impact and priority for improvement in hand function in tetraplegics. Spinal Cord, 2004, 42:526-532. doi: http://dx.doi.org/10.1038/sj.sc.3101638 PMID:15224087 72. Chang SM et al. Urologic status of 74 spinal cord injury patients from the 1976 Tangshan earthquake, and managed for over 20 years using the Crede maneuver. Spinal Cord, 2000, 38:552-554. doi: http://dx.doi.org/10.1038/sj.sc.3101060 PMID:11035477 73. Weld KJ, Dmochowski RR. Effect of bladder management on urological complications in spinal cord injured patients. The Journal of Urology, 2000, 163:768-772. doi: http://dx.doi.org/10.1016/S0022-5347(05)67800-7 PMID:10687973 74. Wyndaele JJ. Intermittent catheterization: which is the optimal technique? Spinal Cord, 2002, 40:432-437. doi: http://dx.doi. org/10.1038/sj.sc.3101312 PMID:12185603 75. Correa GI, Rotter KP. Clinical evaluation and management of neurogenic bowel after spinal cord injury. Spinal Cord, 2000, 38:301-308. doi: http://dx.doi.org/10.1038/sj.sc.3100851 PMID:10822403 76. Consortium for Spinal Cord Medicine. Neurogenic bowel management in adults with spinal cord injury. Washington, DC, Paralyzed Veterans of America, 1998. 77. Krassioukov A et al. Neurogenic bowel following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–41 (http://www.scireproject. com/rehabilitation-evidence, accessed 25 April 2012). 78. Yasmeen R et al. How do patients with chronic spinal injury in Pakistan manage their bowels? A cross-sectional survey of 50 patients. Spinal Cord, 2010, 48:872-875. doi: http://dx.doi.org/10.1038/sc.2010.46 PMID:20440300 79. Ayaş S et al. The effect of abdominal massage on bowel function in patients with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2006, 85:951-955. doi: http://dx.doi.org/10.1097/01.phm.0000247649.00219.c0 PMID:17117000 80. Branagan G et al. Effect of stoma formation on bowel care and quality of life in patients with spinal cord injury. Spinal Cord, 2003, 41:680-683. doi: http://dx.doi.org/10.1038/sj.sc.3101529 PMID:14639447 81. Coggrave M et al. Progressive protocol in the bowel management of spinal cord injuries. British Journal of Nursing, 2006, 15:1108-1113. PMID:17170659 82. Consortium for Spinal Cord Medicine. Sexuality and reproductive health in adults with spinal cord injury: a clinical practice guideline for health-care professionals. Washington, DC, Paralyzed Veterans of America, 2010. 83. Kreuter M, Siosteen A, Biering-Sorensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. Journal of Rehabilitation Medicine, 2008, 40:61-69. doi: http://dx.doi.org/10.2340/16501977-0128 PMID:18176739 84. Kreuter M et al. Women’s sexual functioning and sex life after spinal cord injury. Spinal Cord, 2011, 49:154-160. doi: http:// dx.doi.org/10.1038/sc.2010.51 PMID:20458327 85. Sipski ML, Richards JS. Spinal cord injury rehabilitation. American Journal of Physical Medicine & Rehabilitation, 2006, 85:310-342. doi: http://dx.doi.org/10.1097/01.phm.0000202105.87011.bf PMID:16554684 86. Burns AS, Ditunno J. Establishing prognosis and maximizing functional outcomes after spinal cord injury. Spine, 2001, 26 Suppl:S137-S145. doi: http://dx.doi.org/10.1097/00007632-200112151-00023 PMID:11805621 87. Kirshblum S et al. Rehabilitation of Spinal Cord Injury. In: Campagnolo D et al., eds. Spinal Cord Medicine. 2nd ed. Philadelphia, PA, Lippincott Williams & Wilkins, 2011: 312-313. 88. Beekhuizen KS, Field-Fote EC. Sensory stimulation augments the effects of massed practice training in persons with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2008, 89:602-608. doi: http://dx.doi.org/10.1016/j. apmr.2007.11.021 PMID:18373988 89. Connolly SJ et al. Upper limb rehabilitation following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 90. Kloosterman MGM, Snoek GJ, Jannink NJA. Systematic review of the effects of exercise therapy on the upper extremity of patients with spinal-cord injury. Spinal Cord, 2009, 47:196-203. doi: http://dx.doi.org/10.1038/sc.2008.113 PMID:18825160
101
Querschnittlähmung – Internationale Perspektiven
91. Lam T et al. Lower limb rehabilitation following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–47 (http://www.scireproject. com/rehabilitation-evidence, accessed 25 April 2012). 92. Mehrholz J et al. Locomotor training for walking after spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (2):CD006676. PMID:18425962 93. Kreutz D. Standing frames and standing wheelchairs: implications for standing. Topics in Spinal Cord Injury Rehabilitation, 2000, 5:24-28. doi: http://dx.doi.org/10.1310/P8YC-WGEH-C1VP-2VC1 94. Shields RK, Dudley-Javoroski S. Musculoskeletal plasticity after acute spinal cord injury: effects of long-term neuromuscular electrical stimulation training. Journal of Neurophysiology, 2006, 95:2380-2390. doi: http://dx.doi.org/10.1152/ jn.01181.2005 PMID:16407424 95. Wolfe DL et al. Physical activity and SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 96. Borg J, Lindström A, Larsson S. Assistive technology in developing countries: a review from the perspective of the Convention on the Rights of Persons with Disabilities. Prosthetics and Orthotics International, 2011, 35:20-9. doi: http:// dx.doi.org/10.1177/0309364610389351 PMID:21515886 97. Bryden AM et al. Perceived outcomes and utilization of upper extremity surgical reconstruction in individuals with tetraplegia at model spinal cord injury systems. Spinal Cord, 2004, 42:169-176. doi: http://dx.doi.org/10.1038/sj.sc.3101579 PMID:14758349 98. Wuolle KS et al. Satisfaction with upper-extremity in individuals with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2003, 84:1145-1149. doi: http://dx.doi.org/10.1016/S0003-9993(03)00292-2 PMID:12917852 99. Snoek GJ et al. Decision for reconstructive interventions of the upper limb in individuals with tetraplegia: the effect of treatment characteristics. Spinal Cord, 2008, 46:228-233. doi: http://dx.doi.org/10.1038/sj.sc.3102110 PMID:17680013 100. Bombardier CH et al. Do preinjury alcohol problems predict poorer rehabilitation progress in persons with spinal cord injury? Archives of Physical Medicine and Rehabilitation, 2004, 85:1488-1492. doi: http://dx.doi.org/10.1016/j. apmr.2003.10.010 PMID:15375822 101. Fann JR et al. Depression after spinal cord injury: comorbidities, mental health service use, and adequacy of treatment. Archives of Physical Medicine and Rehabilitation, 2011, 92:352-360. doi: http://dx.doi.org/10.1016/j.apmr.2010.05.016 PMID:21255766 102. Hastings J et al. The differences in self-esteem, function, and participation between adults with low cervical motor tetraplegia who use power or manual wheelchairs. Archives of Physical Medicine and Rehabilitation, 2011, 92:1785-1788. doi: http://dx.doi.org/10.1016/j.apmr.2011.03.023 PMID:21762872 103. Krause JS. Depression after spinal cord injury: relation to gender, ethnicity, ageing and socioeconomic indicators. Archives of Physical Medicine and Rehabilitation, 2000, 81:1099-1109. doi: http://dx.doi.org/10.1053/apmr.2000.7167 PMID:10943762 104. Kennedy P, Evans M, Sandhu N. Psychological adjustment to spinal cord injury: the contribution of coping, hope and cognitive appraisals. Psychology Health and Medicine, 2009, 14:17-33. doi: http://dx.doi.org/10.1080/13548500802001801 PMID:19085309 105. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http:// dx.doi.org/10.1038/sc.2011.182 106. Consortium for Spinal Cord Medicine. Depression following spinal cord injury: a clinical practice guideline for primary care physicians. Paralyzed Veterans of America, 1998. 107. Kennedy P et al. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injury. The British Journal of Clinical Psychology, 2003, 42:41-52. doi: http://dx.doi.org/10.1348/014466503762842002 PMID:12675978 108. Boschen KA, Tonack M, Gargaro J. Long-term adjustment and community reintegration following spinal cord injury. International Journal of Rehabilitation Research, 2003, 26:157-164. doi: http://dx.doi.org/10.1097/00004356-20030900000001 PMID:14501566 109. Kroll T, ed. Focus on disability: trends in research and application. Hauppauge, NY, Nova Science Publishers, 2008. 110. Ljungberg I et al. Using peer mentoring for people with spinal cord injury to enhance self-efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 2011, 20:351-358. doi: http://dx.doi.org/10.1111/j.13652702.2010.03432.x PMID:21219518 111. Sherman JE, DeVinney DJ, Sperling KB. Social support and adjustment after spinal cord injury: influence of past peermentoring experiences and current live-in partner. Rehabilitation Psychology, 2004, 49:140-149. doi: http://dx.doi. org/10.1037/0090-5550.49.2.140 112. Tate DG, Boninger ML, Jackson AB. Future directions for spinal cord injury research: recent developments and model systems contributions. Archives of Physical Medicine and Rehabilitation, 2011, 92:509-515. doi: http://dx.doi.org/10.1016/j. apmr.2010.07.243 PMID:21353833
102
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
113. Bergström AL, Samuelsson K. Evaluation of manual wheelchairs by individuals with spinal cord injuries. Disability and Rehabilitation. Assistive Technology, 2006, 1:175-182. doi: http://dx.doi.org/10.1080/17483100600573230 PMID:19260185 114. Sisto SA, Forrest GF, Faghri PD. Technology for mobility and quality of life in spinal cord injury: analyzing a series of options available. IEEE Engineering in Medicine and Biology Magazine, 2008, 27:56-68. doi: http://dx.doi.org/10.1109/ EMB.2007.907398 PMID:18463021 115. Biering-Sørensen F, Hansen RB, Biering-Sørensen J. Mobility aids and transport possibilities 10–45 years after spinal cord injury. Spinal Cord, 2004, 42:699-706. doi: http://dx.doi.org/10.1038/sj.sc.3101649 PMID:15289807 116. Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 2001, 15:600-606. doi: http://dx.doi.org/10.1191/0269215501cr453oa PMID:11777090 117. Hedrick B et al. Employment issues and assistive technology use for persons with spinal cord injury. Journal of Rehabilitation Research and Development, 2006, 43:185-198. doi: http://dx.doi.org/10.1682/JRRD.2005.03.0062 PMID:16847785 118. Phillips B, Zhao H. Predictors of assistive technology abandonment. Assistive Technology, 1993, 5:36-45. doi: http://dx.doi. org/10.1080/10400435.1993.10132205 PMID:10171664 119. Dieruf K, Ewer L, Boninger D. The natural-fit handrim: factors related to improvement in symptoms and function in wheelchair users. The Journal of Spinal Cord Medicine, 2008, 31:578-585. PMID:19086716 120. Ayyappa MS, Downs K. Spinal orthoses in spinal cord medicine: principles and practice. New York, Demos Medical Publishing Inc., 2003. 121. Yamane A. Lower limb orthoses and rehabilitation. New York, NY, Demos Medical Publishing Inc, 2003. 122. Scherer MJ, Cushman LA. Measuring subjective quality of life following spinal cord injury: a validation study of the assistive technology device predisposition assessment. Disability and Rehabilitation, 2001, 23:387-393. doi: http://dx.doi. org/10.1080/09638280010006665 PMID:11394589 123. Chen YL et al. A head orientated wheelchair for people with disabilities. Disability and Rehabilitation, 2003, 25:249-253. doi: http://dx.doi.org/10.1080/0963828021000024979 PMID:12623613 124. Regan MA et al. A systematic review of the therapeutic interventions for pressure ulcers after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:213-231. doi: http://dx.doi.org/10.1016/j.apmr.2008.08.212 PMID:19236976 125. Atkins MA, Clark D, Waters RL, eds. Upper limb orthoses in spinal cord medicine: principles and practice. New York, Demos Medical Publishing Inc., 2003. 126. Atkins MS et al. Mobile arm supports: evidence-based benefits and criteria for use. The Journal of Spinal Cord Medicine, 2008, 31:388-393. PMID:18959356 127. Norweg A et al. Patterns, predictors, and associated benefits of driving a modified vehicle after spinal cord injury: findings from the national spinal cord injury model systems. Archives of Physical Medicine and Rehabilitation, 2011, 92:477-483. doi: http://dx.doi.org/10.1016/j.apmr.2010.07.234 PMID:21353830 128. Bodine C, Buning M. The role of assistive technology in rehabilitation. In: Braddom R, ed. Physical medicine & rehabilitation, 3rd ed. Cambridge, MA, Elsevier, 2005. 129. Goodman N, Jette AM. Computer and Internet use by persons after traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:1492-1498. doi: http://dx.doi.org/10.1016/j.apmr.2007.12.038 PMID:18674985 130. Sears A, Young M. The human-computer interaction handbook: fundamentals, evolving technologies and emerging applications. Hillsdale, NJ, L Erlbaum Associates Inc, 2002. 131. Craig A et al. The effectiveness of a hands-free environmental control system for the profoundly disabled. Archives of Physical Medicine and Rehabilitation, 2002, 83:1455-1458. doi: http://dx.doi.org/10.1053/apmr.2002.34624 PMID:12370885 132. Allen S, Resnik L, Roy J. Promoting independence for wheelchair users: the role of home accommodations. The Gerontologist, 2006, 46:115-123. doi: http://dx.doi.org/10.1093/geront/46.1.115 PMID:16452291 133. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disability and Rehabilitation, 2003, 25:487-490. doi: http://dx.doi.org/10.1080/0963828031000071723 PMID:12745944 134. Driscoll MP, Rodger SA, De Jonge DM. Factors that prevent or assist the integration of assistive technology into the workplace for people with spinal cord injuries: perspectives of the users and their employers and co-workers. Journal of Vocational Rehabilitation, 2001, 16:53-66. 135. Scherer MJ. Living in the state of stuck. How technology impacts the lives of people with disabilities, 3rd edition. Cambridge, MA, Brookline Books, 2000. 136. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008.
103
Querschnittlähmung – Internationale Perspektiven
137. Rigby P et al. Impact of electronic aids to daily living on the lives of persons with cervical spinal cord injuries. Assistive Technology, 2005, 17:89-97. doi: http://dx.doi.org/10.1080/10400435.2005.10132099 PMID:16392713 138. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/ oti.228 PMID:17624872 139. Glumac LK et al. Guatemalan caregivers’ perceptions of receiving and using wheelchairs donated for their children. Pediatric Physical Therapy, 2009, 21:167-175. doi: http://dx.doi.org/10.1097/PEP.0b013e3181a34a2b PMID:19440126 140. Rushton PW et al. Satisfaction with participation using a manual wheelchair among individuals with spinal cord injury. Spinal Cord, 2010, 48:691-696. doi: http://dx.doi.org/10.1038/sc.2009.197 PMID:20125106 141. Judge S, Floyd K, Jeffs T. Using an assistive technology toolkit to promote inclusion. Early Childhood Education Journal, 2008, 36:121-126. doi: http://dx.doi.org/10.1007/s10643-008-0257-0 142. Ameratunga S et al. Rehabilitation of the injured child. Bulletin of the World Health Organization, 2009, 87:327. doi: http:// dx.doi.org/10.2471/BLT.09.057067 PMID:19551242 143. Ripat J. Function and impact of electronic aids to daily living for experienced users. Technology and Disability, 2006, 18:79-87. 144. Rigby P, Ryan SE, Campbell KA. Electronic aids to daily living and quality of life for persons with tetraplegia. Disability and Rehabilitation. Assistive Technology, 2011, 6:260-267. doi: http://dx.doi.org/10.3109/17483107.2010.522678 PMID:20883120 145. Agree EM et al. Reconsidering substitution in long-term care: when does assistive technology take the place of personal care? Journal of Gerontology: Social Sciences, 2005, 60:S272-S280. doi: http://dx.doi.org/10.1093/geronb/60.5.S272 PMID:16131628 146. Field MJ, Jette AM. The future of disability in America. Washington, DC, The National Academies Press, 2007. 147. Schraner I et al. Using the ICF in economic analyses of assistive technology systems: methodological implications of a user standpoint. Disability and Rehabilitation, 2008, 30:916-926. PMID:18484387 148. Yeo JD et al. Mortality following spinal cord injury. Spinal Cord, 1998, 36:329-336. doi: http://dx.doi.org/10.1038/ sj.sc.3100628 PMID:9601112 149. DeVivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and causes of death among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1411-1419. doi: http://dx.doi.org/10.1016/S00039993(99)90252-6 PMID:10569435 150. Krause JS et al. Health status, community integration, and economic risk factors for mortality after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1764-1773. doi: http://dx.doi.org/10.1016/j.apmr.2004.06.062 PMID:15520971 151. Chiodo AE et al. Spinal cord injury medicine: 5: long-term medical issues and health maintenance. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl. 1:S76-S83. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.015 PMID:17321853 152. Fernhall B et al. Health implications of physical activity in individuals with spinal cord injury: a literature review. Journal of Health and Human Services Administration, 2008,468-502. PMID:18236700 153. Krause JS, Saunders LL. Health, secondary conditions, and life expectancy after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:1770-1775. doi: http://dx.doi.org/10.1016/j.apmr.2011.05.024 PMID:22032212 154. McColl MA et al. Primary care for people with SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–24 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 155. Soden RJ et al. Causes of death after spinal cord injury. Spinal Cord, 2000, 38:604-610. doi: http://dx.doi.org/10.1038/ sj.sc.3101080 PMID:11093321 156. Bauman WA, Spungen AM. Coronary heart disease in individuals with spinal cord injury: assessment of risk factors. Spinal Cord, 2008, 46:466-476. doi: http://dx.doi.org/10.1038/sj.sc.3102161 PMID:18180789 157. Engel S, Leong G. Health maintenance for adults with spinal cord injuries: targeting health professionals. Sydney, NSW State Spinal Cord Injury Service, 2008. 158. Myers J, Lee M, Kiratli J. Cardiovascular disease in spinal cord injury: an overview of prevalance, risk, evaluation and management. American Journal of Physical Medicine & Rehabilitation, 2007, 86:142-152. doi: http://dx.doi.org/10.1097/ PHM.0b013e31802f0247 PMID:17251696 159. Warburton DER et al. Cardiovascular health and exercise following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–38 (http://www. scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 160. Wahman K et al. Cardiovascular disease risk factors in persons with paraplegia: the Stockholm spinal cord injury study. Journal of Rehabilitation Medicine, 2010, 42:272-278. doi: http://dx.doi.org/10.2340/16501977-0510 PMID:20419873 161. Cowan RE, Nash M. Cardiovascular disease, SCI and exercise: unique risks and focused countermeasures. Disability and Rehabilitation, 2010, 32:2228-2236. doi: http://dx.doi.org/10.3109/09638288.2010.491579 PMID:20524925
104
Kapitel 4
Bedürfnisse bei der Gesundheitsversorgung und Rehabilitation
162. Johnston MV et al. Preventive services and health behaviors among people with spinal cord injury. The Journal of Spinal Cord Medicine, 2005, 28:43-54. PMID:15832903 163. Krause JS et al. Risk of mortality after spinal cord injury: an 8-year prospective study. Archives of Physical Medicine and Rehabilitation, 2009, 90:1708-1715. doi: http://dx.doi.org/10.1016/j.apmr.2009.04.020 PMID:19801060 164. Ditor DS. Maintenance of exercise participation in individuals with spinal cord injury: effects on quality of life, stress and pain. Spinal Cord, 2003, 41:446-450. doi: http://dx.doi.org/10.1038/sj.sc.3101487 PMID:12883542 165. Fekete C, Rauch A. Correlates and determinants of physical activity in persons with spinal cord injury: a review using the International Classification of Functioning, Disability and Health as reference framework. Disability and Health Journal, 2012, 5:140-150. doi: http://dx.doi.org/10.1016/j.dhjo.2012.04.003 PMID:22726854
105
Kapitel 5 Stärkung von Gesundheitssystemen
„Ich erlitt meine Verletzung als das größte Krankenhaus meines Wohnortes in Schutt und Asche lag. Der Operationssaal war außer Betrieb und deswegen konnten keine Operationen durchgeführt werden! Meine Familie versuchte alles in ihrer Macht stehende, um mich in ein Krankenhaus im Nachbarland verlegen zu lassen, jedoch waren alle Mühen vergeblich. Der Leiter der Orthopädie verhielt sich mir gegenüber damals derart unmenschlich, dass seine Worte meinen Willen zu kämpfen zerstörten. Eines Tages kam er in mein Krankenzimmer, versammelte meine Mutter und meine Familie auf eine unhöfliche Art und Weise um mich herum und erklärte, dass ich von nun an vor mich hinvegetieren und nie mehr sitzen oder gehen können würde!“ (Angela, Uganda) „Ich habe positive Erfahrungen mit Ärzten wie z.B. bei genauen Erklärung über meine Behinderung. Dies macht es für mich leichter, meine Behinderung zu verstehen und es hilft mir, mich damit auseinanderzusetzen. Auch haben mir meine Ärzte Mut gemacht, dass ich auch mit meiner Behinderung ein glückliches Leben führen kann. Ich finde es herausfordernd, besonders die langfristige Gesundheitserhaltung. Bei einer Querschnittlähmung müssen wir mit vielen Komplikationen umgehen wie z. B. Darm und Blase, Bewegung der Gliedmaßen und es wird eine sehr schwere Aufgabe sein gesund zu bleiben.“ (Sulieman, Saudi Arabien) „Eines der größten Probleme, mit dem ich mich nach der Entlassung aus dem Rehabilitationszentrum konfrontiert sah, war es, Ärzte zu finden, die sich mit den besonderen Bedürfnissen und Problemen von Patienten mit einer Querschnittlähmung auskannten. Es ist schwierig, mit spastischen Lähmungen zu reisen, sich zu transferieren oder auf der Untersuchungsliege zu liegen. Da die spastischen Lähmungen gewöhnlich weniger häufig am Morgen auftreten, bitte ich normalerweise darum, einen Termin am Vormittag zu bekommen. Nicht viele Arztpraxen waren jedoch Willens, mir diesen Gefallen zu tun. Wenn dann endlich ich an die Reihe kam, tanzten meine Beine gewöhnlich wie verrückt. Ein weiteres Problem war die Autonome Dysreflexie (AD). Beinahe 90% der Ärzte außerhalb des Rehabilitationszentrums waren sich dieses Phänomens nicht bewusst. So musste ich fast immer erklären, dass ich eine AD haben werde, wenn mein Katheterbeutel voll oder meine Position unbequem war. Selbst nachdem ich es erwähnte hatte, vergaßen sie, den Beutel regelmäßig zu überprüfen und ich hatte eine AD. Ich nahm deshalb gewöhnlich meinen Bruder mit, damit er die Anzeichen einer AD bei mir erkennen konnte.“ (Alexis, Indien) „Während des Erdbebens in Haiti im Jahr 2010 wurde ich von einer einstürzenden Wand getroffen und schwer verletzt. Meine Verletzungen wurden als Tetraplegie unterhalb des Niveaus C6 diagnostiziert. Fünf Monate nach dem Erdbeben kam ich wieder in die Klinik Haiti Hospital Appeal zur Rehabilitation. Dort erhielt ich meinen ersten Rollstuhl. Dieser Rollstuhl passte jedoch weder für meine Größe (ich bin sehr groß), noch für mein Verletzungsniveau. In Haiti kommt das Gesundheitssystem nicht für die Kosten eines Rollstuhls auf – man muss sich selbst darum kümmern – und selbst dafür bezahlen. Ein Jahr nach dem Eintritt der Querschnittlähmung bekam ich einen neuen manuellen Rollstuhl, der mir von einer amerikanischen Organisation zur Verfügung gestellt wurde.“ (Samuel, Haiti)
5
Stärkung von Gesundheitssystemen Kapitel 4 lieferte eine Übersicht der Bedürfnisse in Bezug auf Gesundheitsversorgung, Rehabilitation und unterstützende Technologie von Menschen mit Querschnittlähmung (QSL). In diesem Kapitel wird nun gezeigt, wie Gesundheitssysteme auf diese Bedürfnisse reagieren können. Derzeit sind die Maßnahmen der Gesundheitssysteme für Querschnittgelähmte in vielen Ländern noch unzureichend. Daraus resultiert eine unnötig hohe Sterblichkeit. Investitionen in die richtigen Mittel und in die Aneignung von Fachwissen kann es Querschnittgelähmten ermöglichen, zu überleben, erfolgreich zu sein und verscha ihnen Zugang zu ihren Grundrechten. Die Weltgesundheitsorganisation (WHO) fördert einen Ansatz zur Stärkung von Gesundheitssystemen, um deren Leistungen zu verbessern. Dies erfolgt unter Berücksichtigung der folgenden sechs „Bausteine“: Führungsrolle und Steuerung, Bereitstellung von Diensten, Personal, Gesundheitstechnologien, Informationssysteme und Finanzierung (1). Während in diesem Kapitel jede Komponente gesondert behandelt wird, sollte man sich jedoch dessen bewusst sein, dass Menschen mit QSL vor allem durch die Interaktionen der verschiedenen Komponenten – sowie durch die sektorübergreifende Koordination zwischen Bildung, Arbeit und Sozialfürsorge –Zugang zur notwendigen Versorgung bekommen. QSL ist für nahezu alle Sparten des Gesundheitssystems von Bedeutung. Deshalb können nicht nur Querschnittgelähmte davon pro tieren, wenn ihre Bedürfnisse e zient gedeckt werden, sondern auch andere Nutzer des Gesundheitssystems. Dieses Kapitel schließt mit einer Reihe von Empfehlungen ab. Sie sollen denjenigen Ländern als Orientierungshilfen dienen, die die Kapazitäten ihres Gesundheitssystems stärken möchten, um die Bedürfnisse von Querschnittgelähmten zu befriedigen.
Unerfüllte Bedürfnisse Gesundheitsversorgung Der Weltbericht Behinderung der WHO und der Weltbank hat gezeigt, dass Menschen mit Behinderungen mehr stationäre und ambulante Gesundheitsfürsorge benötigen als Menschen ohne Behinderungen. Des Weiteren geben 109
Querschnittlähmung – Internationale Perspektiven
Menschen mit Behinderungen auch an, dass sie nicht mehr Versorgung erhalten als Menschen ohne Behinderungen (2). Beispielsweise zeigen wissenscha liche Untersuchungen, dass Menschen mit Behinderungen weniger häu g Zugang zu medizinischen Vorsorgeuntersuchungen wie Mammographien, Pap-Abstrichen und Raucherberatung haben als die restliche Bevölkerung (3, 4). Es ist o schwierig, spezi sche Daten über die Inanspruchnahme von Diensten zur Gesundheitsversorgung und über unbefriedigte Bedürfnisse von Querschnittgelähmten zu erhalten, insbesondere in Ländern mit einem niedrigen Nationaleinkommen. Verfügbare wissenscha liche Daten belegen jedoch die Ergebnisse des Weltbericht Behinderung. Sie zeigen, dass Menschen mit Querschnittslähmungen o einen enormen ungedeckten Bedarf an Nachsorge haben (5) sowie an primärer Versorgung (6) nach Abschluss der Erstrehabilitationsphase. Eine kanadische Kohortenstudie hat beispielsweise gezeigt, dass Querschnittgelähmte innerhalb einer sechsjährigen Nachsorgephase eher im Kontakt mit dem Gesundheitsversorgungssystem waren (höhere stationäre Behandlungsraten eingeschlossen) als die restliche Bevölkerung (7). Eine registerbasierte Studie in Dänemark, die Patienten bis zu neun Jahre nach Eintritt der QSL einschloss, hat gezeigt, dass sie 0,5 Mal pro Jahr stationär behandelt wurden und demzufolge drei Mal mehr im Vergleich zu einer Kontrollgruppe; die gleiche Gruppe von Querschnittgelähmten nahmen die Dienste von Hausärzten und Physiotherapeuten sechs Mal mehr in Anspruch als die Kontrollgruppe (8). Unbefriedigte Bedürfnisse in der Primärversorgung von Querschnittgelähmten beziehen sich auf Gesundheitsförderung, Präventionsdienste und medizinische Behandlung (9). Insbesondere Informationsbedürfnisse und Bedenken in Bezug auf die psychologische, sexuelle und reproduktive Gesundheit werden unzureichend thematisiert (9). Eine Studie in den Niederlanden hat gezeigt, dass bei zu Hause lebenden 110
Querschnittgelähmten ein erheblicher Versorgungsbedarf besteht, u.a. an Informationen und psychologischer Betreuung (10). Die Studienteilnehmer der niederländischen Studie erachteten außerdem Sekundärerkrankungen im Zusammenhang mit QSL als weitgehend vermeidbar. Beispielsweise wurde angegeben, dass 50% der Dekubitusfälle und 25% der Probleme mit Blase, Darm und Sexualität vermeidbar wären. Diese könnten insbesondere durch die Gewährleistung von Zugang zu einer qualitativ hochwertigen Versorgung und zu Informationen sowie durch Selbstmanagement der eigenen Gesundheit und des eigenen Verhaltens vermieden werden (10).
Rehabilitation Die Verfügbarkeit von weltweiten Daten über unbefriedigte Bedürfnisse bei den Rehabilitationsdiensten, einschließlich der unterstützenden Technologie, ist sehr begrenzt (2). National durchgeführte Studien in Malawi, Mosambik, Namibia, Sambia und Simbabwe über die Lebensbedingungen von Menschen mit Behinderungen, Querschnittgelähmte eingeschlossen, verwiesen auf Lücken in der Bereitstellung von Diensten zur medizinischen Rehabilitation und von technischen Hilfsmitteln (11–15). Aufgrund der nicht vorhandenen Daten über die (nicht abgedeckten) Bedürfnisse, können Forschung zur Untersuchung von Patientenperspektiven und Erfahrungen mit Rehabilitation hilfreich sein, um Informationen darüber zu bekommen, ob Dienste die Bedürfnisse von Menschen mit QSL abdecken. Querschnittgelähmte gaben an, dass sie während der Rehabilitation nicht angemessen auf die Rückkehr ins persönliche Umfeld vorbereitet werden, und dass es Diskrepanzen zwischen den in der Rehabilitation erlernten Fähigkeiten und den Fähigkeiten gibt, die in der „realen Welt“ notwendig sind (16, 17). Die oben zitierte niederländische Studie berichtete, dass 72% der Teilnehmer angaben, dass zusätzliche Betreuung notwendig war, inklusive Beratung beim
Kapitel 5
Stärkung von Gesundheitssystemen
Rehabilitationszentrum, Neubewertung durch das Rehabilitationszentrum, telefonische Beratung und Hausbesuche (10). Unterstützende Technologie ist ein wichtiges ema: Für Länder mit einem niedrigen und mittleren Nationaleinkommen wird geschätzt, dass nur 5−15% der Menschen mit Behinderungen, die technische Hilfsmittel benötigen, zu diesen auch Zugang haben (18). Wissenscha liche Studien im südlichen Afrika (s. oben) zeigten, dass nur 17−37% der Menschen, die ihren Bedarf an technischen Hilfsmitteln zum Ausdruck brachten auch welche erhielten, wobei mehr Männer als Frauen angaben, technische Hilfsmittel zu verwenden (Malawi: Männer 25,3%, Frauen 14,1%; Sambia: Männer 15,7%, Frauen 11,9%). Die Prozentzahl der Stadtbewohner, die angab, technische Hilfsmittel zu verwenden, war grösser als die der Betro enen in ländlichen Gebieten. Menschen, die in Ländern mit einem hohen Nationaleinkommen leben, haben möglicherweise ebenfalls ungedeckte Bedürfnisse hinsichtlich unterstützender Technologie. In einer nationalen Erhebung über Menschen mit QSL, multipler Sklerose und Zerebralparese in den USA gab die Häl e der Befragten (56,5%) an, dass sie unterstützende Technologie während des vorausgegangenen Jahres benötigt hätten; 28,4% derer, die berichteten, dass sie unterstützende Technologie benötigten, gaben an, dass sie diese nicht immer erhielten wenn es notwendig war (19). In einer Studie über QSL in den Niederlanden gab die Mehrheit der Befragten an (56,7%), dass sie Probleme hatten, Rollstühle zu bekommen und infolgedessen die Entlassung aus dem Rehabilitationszentrum o aufgrund der Wartezeiten verzögert wurde. Desweiteren waren 35,9% der Personen, die einen manuellen Rollstuhl benutzten und 47,5% derjenigen, die einen Elektrorollstuhl benutzten, mit diesem unzufrieden. Die gleiche Studie berichtete außerdem, dass ein großer Teil der Befragten (78,3%) zustimmte, dass ihr Zuhause die notwendigen Anpassungen
aufwies. Gleichzeitig berichtete ein erheblicher Teil der Befragten (38,1%) aber, dass nicht alle Anpassungen wie gewünscht durchgeführt wurden (20).
Stärkung der Gesundheitssysteme Führungsrolle und Steuerung Die UN-Konvention über die Rechte von Menschen mit Behinderungen (BRK) besagt, dass alle Menschen mit Behinderungen das Recht auf das erreichbare Höchstmaß an Gesundheit ohne Diskriminierung aufgrund von Behinderung haben. Außerdem besagt die BRK, dass alle Vertragsstaaten sich verp ichten, angemessene Maßnahmen zu tre en, um den Zugang zu Gesundheitsdiensten sicherzustellen, einschließlich Rehabilitation, wie sowohl in Artikel 25 als auch in Artikel 26 der Konvention beschrieben (21). Die BRK erwähnt ebenfalls ausdrücklich, dass es in der Verantwortung der Vertragsstaaten liegt zu gewährleisten, dass Menschen mit Behinderungen Zugang zu unterstützenden Technologien haben. Zur Einhaltung dieser Verp ichtungen sind eine nationale Gesetzgebung, politische Konzepte und Strategien notwendig. In vielen Ländern mit einem niedrigen oder mittleren Nationaleinkommen ist dies jedoch nicht gegeben und die Versorgung mit und der Zugang zu Gesundheitsversorgungs- und Rehabilitationsdiensten (unterstützende Technologie eingeschlossen) ist damit nicht gewährleistet (2). Eine internationale Erhebung über die Implementierung der Rahmenbedingungen für die Herstellung der Chancengleichheit für Menschen mit Behinderungen der Vereinten Nationen hob hervor, dass 50% der 114 befragten Länder keine Rechtsvorschri en in Bezug auf Rehabilitation erlassen hatten, 42% über keine politischen Konzepte der Rehabilitation verfügten, 48% über keine politischen Konzepte speziell in Bezug 111
Querschnittlähmung – Internationale Perspektiven
auf die Versorgung mit technischen Hilfsmitteln verfügten und 40% keine Rehabilitationsprogramme erstellt hatten (22). In den Staaten, in denen eine staatliche Gesetzgebung existiert, bestehen häu g Einschränkungen in Bezug auf die Art und Vielfalt der vorhandenen Versorgung, was es Querschnittgelähmten erschweren kann, Zugang zur benötigten Versorgung zu erhalten. Widersprüchliche De nitionen von Behinderung, Anspruchsvoraussetzungen für Unterstützung und komplizierte Prozesse können Betro enen Probleme bereiten, die benötigten Ressourcen zu erhalten oder sich dafür einzusetzen (23). Ohne angemessene Gesetzgebung und Strategien ist es schwierig sicherzustellen, dass Menschen mit einer QSL einen angemessenen Zugang zu Gesundheitsversorgungs- und Rehabilitationsdiensten haben. Es bedarf bestimmter politischer Konzepte über Behinderung (inklusive QSL), und es sollte sichergestellt werden, dass die Bedürfnisse von Menschen mit QSL in Bezug auf Gesundheit und Rehabilitation in allen Regierungsbereichen berücksichtigt werden. Zu diesen Bereichen gehören Wohnungsbau, Personenbeförderung, Bildung, Erholung und Freizeit, Arbeit und soziale Wohlfahrt. Außerdem sollte es Pläne für den Fall von humanitären Katastrophen geben, wie z. B. Erdbeben, die eine große Anzahl von traumatischen Querschnittlähmungen zur Folge haben und zu einer Überforderung von bereits geschwächten Systemen führen können (vgl. Kasten 5.1). Länder müssen einem Ansatz folgen, bei dem die Kapazitäten von Gesundheitssystemen Schritt für Schritt erweitert werden, um die Bedürfnisse von Querschnittgelähmten abzudecken. Die Anerkennung der Bedürfnisse und des Nutzens von Gesundheitsversorgung und Rehabilitation für Menschen mit einer QSL ist ein entscheidender erster Schritt. Die Einbindung von Querschnittgelähmten in den Planungsprozess ist ebenfalls ausschlaggebend, da sie direkt von den politischen Entscheidungen betro en sind und ihre Ansichten, ihr Wissen und ihre 112
Erfahrung Einblicke von unschätzbarem Wert bieten können. Während die Regierungen dafür verantwortlich sind, dass politische Konzepte und eine strategische Planung befürwortet und implementiert werden, können verschiedene Interessenvertreter – darunter spezialisierte Zentren für Querschnittlähmung, Krankenhäuser, Berufsverbände, Universitäten und nationale und internationale Entwicklungsagenturen –eine bedeutende Rolle spielen als Partner und bei der Zusammenarbeit sowie durch die Bereitstellung von nanzieller und technischer Unterstützung. Bei Ländern, die nur begrenzt Ressourcen zur Verfügung haben, kann die Versorgung mit technischen Hilfsmitteln als Unterstützung dienen. Dies kann die Entwicklung von einschlägigen Leitlinien, die Organisation von regionalen und nationalen Workshops zur Kapazitätsbildung und Schulungen sowie Unterstützung bei der Entwicklung von nationalen politischen Konzepten und Programmen erforderlich machen.
Bereitstellung von Diensten Systeme für die Bereitstellung von Gesundheitsversorgungs- und Rehabilitationsdiensten (technische Hilfsmittel eingeschlossen) variieren weltweit. Es gibt mehrere verschiedene Modelle der Versorgung vor der Einlieferung ins Krankenhaus; diese reichen von hochentwickelten Versorgungsystemen, bei denen hochquali ziertes Personal eingesetzt wird bis zu Systemen, die sich auf Freiwilligenarbeit stützen, und welche häu g in ressourcenarmen Gebieten angewendet werden. Unabhängig vom System ist es äußerst wichtig, dass die medizinische Erstversorgung in das bestehende Gesundheitssystem integriert ist (28). Die medizinische Versorgung von querschnittgelähmten Menschen in der Akut- und Postakutphase wird gewöhnlich von stationären Einrichtungen wie Traumazentren, allgemeinen Krankenhäusern und Spezialkliniken oder Zentren für QSL durchgeführt, während
Kapitel 5
Stärkung von Gesundheitssystemen
Kasten 5.1. Organisation von Rehabilitationsdiensten nach dem Erdbeben im chinesischen Sichuan Im Mai 2008 führte ein verheerendes Erdbeben in der chinesischen Provinz Sichuan zu einer geschätzten Zahl von 86.000 Toten und Vermissten sowie zahlreichen Verletzten und Obdachlosen. Schätzungsweise wurden ca. 200 Menschen mit Rückenmarksverletzungen, die auf eine intensive medizinische Versorgung angewiesen waren, in Krankenhäuser eingeliefert. Nach dem Erdbeben kooperierte die Chinese Association of Rehabilitation Medicine (CARM) mit Gesundheitsvertretern der regionalen Regierung sowie der Caring for Children Foundation (eine nationale NGO). Ziel war es, den „NHV“-Ansatz einzuführen, um die Rehabilitationsbedürfnisse von Menschen mit QSL und anderen traumatischen Verletzungen mit Folge einer Behinderung besser berücksichtigen zu können. Dieser Ansatz kombiniert eine Finanzierung durch eine NGO (N) und Ressourcen von lokalen Gesundheitsministerien („health departments“: H) mit dem Engagement von ehrenamtlichen Rehabilitationsexperten („rehabilitation volunteers“: V). Mithilfe dieses Ansatzes sollte ein Kontinuum von Diensten geschaffen werden, von der institutionsbasierten Rehabilitation (IBR) bis hin zur gemeindenahen Rehabilitation („community-based rehablilitation“ (CBR)). Das Gesetz der Volksrepublik China zum Schutz von Menschen mit Behinderungen von 2008 (24) und die BRK (21) lieferten den gesetzlichen Rahmen für das NHV Modell. Als Folge der stark zerrütteten Infrastruktur des Gesundheitssystems in der Provinzhauptstadt Chengdu und in angrenzenden Gebieten sowie der überwältigenden Anzahl von traumatischen QSL und anderen Verletzungen mit der Folge einer Behinderung aufgrund des Erdbebens, wurde eine Massenevakuierung von medizinisch stabilen Patienten in Krankenhäuser in anderen Teilen Chinas vorgenommen (25 ). Nach mehreren Monaten war die Infrastruktur wieder soweit intakt, dass die meisten Menschen direkt in ihre Wohnstätten oder in Auffanglager sowie in Krankenhäuser in der Region Chengdu zur weiterführenden medizinischen Versorgung gebracht werden konnten. Aufgrund des zu erwarteten Rehabilitationsbedarfs bei Menschen, die in ihre Gemeinde zurückgekehrt waren, entwickelte CARM in Zusammenarbeit mit lokalen Gesundheitsvertretern der Regierung sowie der Caring for Children Foundation, ein Projekt zur Bereitstellung von Folgeoperationen von Brüchen und Rehabilitation für Menschen mit Knochenbrüchen, QSL, Amputationen, traumatischen Gehirnverletzungen und peripheren Nervenverletzungen. Es wurde eine Bewertung der in der Region bestehenden Rehabilitationsbedürfnisse mit Hilfe von Handicap International und der Caring for Children Foundation durchgeführt, um Personen zu identifizieren, die von IBR profitieren würden. Nach einer Pilotphase wurde IBR am Krankenhaus des Gesundheitsministeriums im Bezirk Mianzhu implementiert. Nach der Entlassung in das persönliche Umfeld verlagerte sich der Schwerpunkt auf die CBR und insbesondere auf deren Gesundheitskomponente – Förderung, Prävention, medizinische Versorgung, Rehabilitation und technische Hilfsmittel. Weitere Komponenten der CBR wurden ebenfalls berücksichtigt, einschließlich Lebensunterhalt, soziale Komponenten und Komponenten der Autonomie, durch die Bereitstellung von Arbeitsdiensten, persönlicher Assistenz und Unterstützung durch Peer Groups. Erdbebenopfer erhielten eine kostenlose IBR und die Kosten für grundlegende Lebensbedürfnisse wie z. B. Ausgaben für den Krankentransport wurden übernommen. Insgesamt ermöglichte das NHV Modell eine bessere Kosteneffizienz durch die Bereitstellung einer IBR in nahegelegenen Krankenhäusern anstatt in weiter entfernten Provinzkrankenhäusern. Die Effizienz des NHV Modells für Rehabilitation im Bereich QSL wurde durch Li (26 ) aufgezeigt, der 51 Erdbebenopfer mit einer QSL untersuchte, die nach der NHV Vorgehensweise behandelt wurden. Es wurde eine durchschnittliche Verbesserung von 30 Punkten auf dem Barthel Index nachgewiesen, ein Instrument zur Messung der alltäglichen Aktivitäten. Medizinische Komplikationen wurden bei den meisten Patienten effizient gehandhabt. Des Weiteren zeigte Hu (27 ) Verbesserungen auf bei der selbstanzugebenden Lebensqualität, dem allgemeinen Gesundheitszustand und der Zufriedenheit mit sozialen Beziehungen sowie der physischen Selbständigkeit und Mobilität bei 26 Querschnittgelähmten, die gemäß dem NHV Modell an ihren Wohnort zurückkehren konnten.
113
Kapitel 5
Stärkung von Gesundheitssystemen
Querschnittgelähmte Menschen und ihre Familienangehörige müssen lernen autonomer zu leben, mit Hilfe von Blasen- und Darmmanagement sowie den Fähigkeiten sich zu transferieren, den Rollstuhl zu benutzen und sich selbst zu versorgen. Beru iche Rehabilitation, Sport und kulturelle Aktivitäten folgen meist in einer späteren Phase.
Diagnosetests und spezielle Ausrüstung (47). Aufgrund der niedrigen Inzidenz von QSL ist es äußerst schwierig, nachhaltige und spezielle Gesundheitsversorgungsdienste in ländlichen und abgelegenen Gebieten zu scha en (47).
Zugänglichkeit
Barrieren
Querschnittgelähmte werden häu g mit Barrieren konfrontiert, die sie daran hindern, ein gesundes Leben zu führen und Gesundheitsversorgungsdienste zu nutzen. Eine Auswahl dieser Barrieren wird unten beschrieben. Aufgrund der facettenreichen Bedürfnisse von Menschen mit QSL in Bezug auf die Gesundheitsversorgung wird eine Vielzahl verschiedener Dienste benötigt. Für die Bereitstellung von Diensten durch Spezialzentren als bevorzugte Möglichkeit für Querschnittgelähmte, sind umfangreiche Investitionen in Form von Ressourcen notwendig. Diese Gesundheitsversorgungs- und Rehabilitationsdienste werden o zentral organisiert und stehen deshalb in ländlichen und abgelegenen Gebieten nur begrenzt zur Verfügung (2). Eine Studie zur Untersuchung von Faktoren, die die Beanspruchung einer gesundheitlichen Versorgung durch früheres Militärpersonal mit Querschnittlähmungen beein ussten, hat gezeigt, dass die räumliche Entfernung von den allgemeinen Einrichtungen zur Gesundheitsversorgung deren Nutzung beein usste – d. h. dass Einrichtungen zur stationären und ambulanten Behandlung weniger o von Personen aufgesucht wurden, die weiter entfernt davon lebten (46). Eine Studie, die in ländlichen und abgelegenen Gebieten Australiens durchgeführt wurde hat gezeigt, dass der Zugang zu speziellen Gesundheitsdiensten wie Schmerzmanagement und Rollstuhl-Sitzsystemen gewöhnlich erschwert war, ebenso wie
Verfügbarkeit
Menschen mit Behinderungen berichten o über Schwierigkeiten beim Zugang zu Einrichtungen der Gesundheitsversorgung. Mangelnde Zugänglichkeit und unzulängliche Ausrüstung können ggf. dazu führen, dass Ärzte und andere Gesundheitsfachleute darauf verzichten, es versäumen oder nicht in der Lage sind, angemessene Verfahren (die sonst Teil der Routine sind) bei Menschen mit Behinderungen in Betracht zu ziehen (2). Eine Befragung von Ärzten in den USA zeigte, dass ihre Praxen nicht barrierefrei waren, obwohl sie sich mancher physischer Barrieren bewusst waren (48). Für Menschen mit Behinderungen und deren Familien ist es o schwierig, über Veränderungen von Systemen zur Bereitstellung von Gesundheitsversorgungs- und Rehabilitationsdiensten (unterstützende Technologie eingeschlossen) zu verhandeln: Komplizierte Verfahren und die Au eilung von Diensten haben sich als erhebliche Barrieren bei der Bedürfnisbefriedigung herausgestellt (5). Es gibt selten ein Patentrezept zur Verbesserung des Zugangs zu unterstützender Technologie und es besteht o Konkurrenzdenken zwischen Designern, Herstellern, Lieferanten, Technikern und Finanzierungsquellen. In manchen Ländern sind die Dienste rund um unterstützende Technologie getrennt von den Gesundheitsdiensten, was die Koordinierung erschwert. In einer Studie gaben Patienten an, dass Verspätungen bei der Erbringung von Dienstleistungen, die involvierte Anzahl an Organisationen und Behörden sowie eine schlechte Behandlung durch Fachleute dazu beitrugen, dass die Bedürfnisse an unterstützender Technologie unbefriedigt blieben (20).
115
Querschnittlähmung – Internationale Perspektiven
In vielen Fällen berichten Querschnittgelähmte, dass Rehabilitationsprogramme ihre Bedürfnisse nicht abdecken – d. h. dass die Dienste nicht auf die individuellen Anforderungen abgestimmt sind (17). Unterstützende Technologie wird z. B. häu g „verschrieben“, ohne die Bedürfnisse des Einzelnen oder dessen persönliche Umwelt in Betracht zu ziehen. Einstellungen wie „besser als gar nichts“ oder Universallösungen sind nicht ungewöhnlich wenn die Ressourcen begrenzt sind (49–51). Eine unangemessene Bewertung der Benutzerbedürfnisse kann dazu führen, dass Einzelne mit unzulänglichen Hilfsmitteln ausgestattet werden (52). Dies wiederum kann negative Konsequenzen mit sich bringen. Wenn Rollstuhlsysteme beispielsweise nicht an die individuellen Bedürfnisse angepasst werden, besteht für Querschnittgelähmte das Risiko von Sekundärerkrankungen wie Druckstellen, Verletzungen durch wiederkehrende Belastungen sowie Schulterverletzungen (53, 54). Menschen mit QSL haben o nur beschränkt Zugang zu benötigten Informationen und Unterstützung, um fundierte Entscheidungen über Gesundheitsversorgung und Rehabilitation tre en zu können. Betro ene können in der frühen Phase nach der Verletzung besonders dann gefährdet sein, wenn sie keine Erfahrung haben und sie durch ihr mangelndes Wissen ihre eigenen Bedürfnisse nicht de nieren können (55). Der geringe Einbezug der Nutzer kann eine Erklärung dafür sein, warum eine große Anzahl von zur Verfügung gestellten Rollstühlen in Ländern mit niedrigen und mittleren Nationaleinkommen nicht für die persönliche Umwelt der Nutzer geeignet sind (56, 57) oder unbenutzt bleiben (55).
Akzeptanz
Ansatz zur Bereitstellung von Diensten und Leistungen maßgeblich. Ungeachtet der Art des bestehenden Modells, sollten die Dienste koordiniert werden, um einen reibungslosen Übergang zwischen den verschiedenen Versorgungsphasen und Einrichtungen der medizinischen Versorgung zu gewährleisten (39, 58). Die Koordination der Gesundheitsversorgung fördert einen kooperativen, interdisziplinären und teamorientierten Ansatz zur Erbringung von Gesundheitsdienstleistungen. Sie stellt Verbindungen zwischen Menschen mit QSL und geeigneten Dienstleistungen und Ressourcen her und stellt eine e zientere und gerechtere Verteilung der Ressourcen sicher (2). Dafür muss ein Versorgungskoordinator bestimmt, ein individueller Versorgungsplan erstellt und ein angemessener Überweisungssowie Informationentransfer an andere Dienste zur Verfügung gestellt werden (2). Eine schwedisch-griechische Studie verglich ähnliche Gruppen von Querschnittgelähmten und kam zur Schlussfolgerung, dass bessere Ergebnisse mit weniger Komplikationen erzielt wurden, wenn es ein konkret de niertes Vorgehen beim Management eines Patienten während des ersten Jahres nach einer traumatischen QSL gab (59).
Alternative und komplementäre Modelle der Leistungserbringung verwenden
Barrieren abbauen
Koordination von Diensten
Da bei der Bereitstellung von Diensten für Querschnittgelähmte mehrere Beteiligte involviert sind, ist ein systematischer und einheitlicher 116
In Fällen, in denen gezielte Spezialdienste für Querschnittgelähmte nicht möglich sind, können andere Modelle zur Bedürfnisbefriedigung in Betracht gezogen werden. Einige alternative Modelle werden im Folgenden näher beschrieben. Es muss jedoch hervorgehoben werden, dass diese nicht aus dem Zusammenhang gegriffen werden können – sie sollten einen Teil des koordinierten Versorgungssystems darstellen. Kleinere Stationen oder Teams Stationen oder Teams für QSL können innerhalb eines allgemeinen Krankenhauses eingerichtet werden. In Brasilien wurde beispielsweise ein Spezialteam für QSL und in Afghanistan eine kleine
Kapitel 5
Stärkung von Gesundheitssystemen
Station als Teil von chirurgischen Kliniken und Zentren für Orthopädie eingerichtet und durch ein zu Hause durchgeführtes Nachsorgeprogramm unterstützt (2, 60). In Vietnam hat sich das nationale Rehabilitationszentrum mit Handicap International zusammengeschlossen, um gemeinsam ein Projekt zur Dezentralisierung von QSL-Diensten durchzuführen. Im Rahmen dieses Projekts wurden Fachstationen an bestehenden Rehabilitationszentren eingerichtet. Fachkrä e zur Unterstützung von allgemeinen Gesundheitsdiensten Es wurden mobile Beratungsteams als Möglichkeit der Unterstützung von Querschnittgelähmten vorgeschlagen, die sich in Kliniken zur Akutversorgung be nden, die über keine auf QSL spezialisierten Stationen verfügen (38). Diese Teams können bei der Prävention und beim Management von Komplikationen im Zusammenhang mit QSL helfen, bei frühzeitigen Überweisungen an Rehabilitationsdienste beratend zur Seite stehen, bei der Entlassungsplanung mitwirken und Schulungen für Krankenhauspersonal durchführen. Zentren für QSL könnten bei der Beratung und Ausbildung eine Rolle spielen, um die Kapazitäten von primären Versorgungs- und Sozialdiensten zu erweitern und Probleme zu identi zieren, denen in einer Gemeinscha lebende Querschnittgelähmte gegenübergestellt sind (5). Outreach Modelle Outreach Modelle ermöglichen es Menschen mit QSL nach der Entlassung aus Dienstleistungszentren mit spezialisierten Gesundheitsdiensten in Kontakt zu bleiben. In diesen Modellen werden Dienste näher an die Wohnstätten der Menschen herangebracht und somit Barrieren wie Entfernung und Transportkosten überwunden. Ambulante Kliniken und Hausbesuche sowie „ iegende Kliniken“ (vgl. Kasten 5.2) sind Beispiele für Outreach Modelle. Durch sie kann Zugang zu spezieller medizinischer Behandlung und zu Rehabilitationsdiensten für Menschen mit QSL in ländlichen und abgelegenen Gemeinden gewährleistet werden. Sie werden
von Menschen mit QSL als alternative Formen der Bereitstellung von Dienstleistungen angenommen (5). Telemedizin/Telerehabilitation Informationen und Kommunikationstechnologie wurden verwendet, um fortlaufende Unterstützungsdienste für Menschen mit QSL zu erbringen (61, 62). Teleberatung und Beratung über das Internet zur medizinischen Versorgung und Rehabilitation wurden für die Behandlung von bestimmten Komplikationen in Verbindung mit einer QSL verwendet, wie z. B. die P ege von Wunden. Es wurde darauf hingewiesen, dass dies ein angemessenes Dienstleistungsmodell für andere Bereiche wie z. B. Blasenmanagement sein könnte (63). Die Verwendung von Telekommunikation ist ebenfalls eine potenzielle Lösung zur Bereitstellung von unterstützenden Technologiediensten in ländlichen und abgelegenen Gegenden (64). Gemeindenahe Rehabilitation (Community-based rehabilitation (CBR)) CBR ist eine weit verbreitete Entwicklungsstrategie, die derzeit in mehr als 90 Ländern der Welt implementiert wird. Sie kann potenziell den Zugang zu Gesundheitsversorgung, Rehabilitation und unterstützender Technologie für Menschen mit Behinderungen verbessern, die in ressourcenarmen Gemeinden leben (65). Eine in Uganda durchgeführte Studie zeigte, dass die Sterblichkeit von Kindern mit Spina bi da unter fünf Jahren o bis zu 50% beträgt, während Gebiete, in denen CBR-Programme durchgeführt werden, eine Sterblichkeitsrate von 16% aufwiesen. Die Sterblichkeitsrate ist somit ähnlich niedrig wie bei nicht-behinderten Kindern. Überlebensraten stehen im Zusammenhang mit dem Verhalten der Eltern, welches bei Besuchen von CBR-Personal unterstützt und gefördert werden kann (66 ). Die Entwicklung von Partnerscha en zwischen bestehenden Spezialdiensten und CBR-Programmen bietet eine Möglichkeit zur weiterführenden und koordinierten Versorgung von Querschnittgelähmten. Es hat sich häu g gezeigt, dass CBR-Personal 117
Querschnittlähmung – Internationale Perspektiven
Kasten 5.2. Fliegende Kliniken besuchen die Aborigine-Gemeinden im Osten von Arnhemland in Australien Einen dauerhaften Zugang zu Gesundheitsversorgungs- und Rehabilitationsdiensten für Menschen mit QSL in den ländlichen und abgelegenen Gebieten Australiens zu schaffen stellt eine erhebliche Herausforderung dar. Im Northern Territory in Australien können viele Aborigines, die eine QSL erleiden, aufgrund unzureichender Gesundheitsversorgungs- und Unterstützungsdienste nicht in ihr persönliches Umfeld zurückkehren. Schwere Traumata der Wirbelsäule und starke nicht-traumatische Lähmungen werden in einer der größten Einrichtungen für QSL im südlichen Teil des Landes behandelt – gewöhnlich vom South Australian Spinal Cord Injury Service (SASCIS) in Adelaide. Medizinische Behandlung und Rehabilitation für Menschen, die weniger schwere Lähmungen des Rückenmarks erlitten haben, werden vom Royal Darwin Hospital Rehabilitation Service (RDHRS) in Darwin im Northern Territory durchgeführt. SASCIS leitet mehrere Outreach-Kliniken in Darwin und Alice Springs, um Nachsorge für Menschen aus dem Northern Territory anzubieten. Für die Ureinwohner, die in Gebieten wie Ost-Arnhemland leben, ist es oft schwierig, diese Kliniken zu nutzen, da sie auf Inseln oder an abgelegenen Orten leben, von welchen aus eine lange Reise durch den Busch notwendig ist, um größere Städte zu erreichen. Gezielte Programme werden benötigt, um die Bedürfnisse von Querschnittgelähmten abzudecken, die in abgelegenen Gemeinden in Nordaustralien leben. 1994 stellte das Territory Insurance Office Motor Accident Scheme die Finanzierung für einen auf QSL spezialisierten Rehabilitationsfacharzt von Adelaide sowie für eine Pflegefachkraft für QSLaus dem Northern Territory zur Verfügung, um zwei Gemeinden in Ost-Arnhemland (Yirrkala und Gapuwiyak) zu besuchen. Mit der Zeit nahm die Anzahl der besuchten Gemeinden und behandelten Personen zu und bald schon waren es 12 Patienten und sieben Gemeinden pro Besuch. Seit 2002 begleitet ebenfalls eine Gesundheitsfachkraft (Beschäftigungstherapeut, Physiotherapeut und/oder Liaison Officer für die Rehabilitation von Urbewohnern) den Arzt und Krankenpfleger. Finanziert wird dies vom RDHRS und dem Territory Health Service. Wenn möglich berät sich das Outreach- Team für Rückenmarksverletzungen mit Mitgliedern des Rural and Remote Allied Health Teams, die mit manchen Patienten möglicherweise in direktem Kontakt stehen sowie mit Gesundheitspersonal der Gemeinde wie Ärzte, Pfleger und den Ureinwohnern Australiens zugehöriges Gesundheitspersonal. Wenn keine Gemeindebesuche gemacht werden, ist das Outreach-Team telefonisch, per Fax oder E-Mail erreichbar. Die Kosten dafür beinhalten kommerzielle Flüge zwischen Darwin und Gove, Übernachtungskosten für ein Motel oder Gästehaus der Gemeinde und Flüge mit der örtlichen Charter Fluggesellschaft. Die Kosten sind günstiger im Vergleich zur bestehenden Alternative, bei der jeder Patient gemeinsam mit einem Pflegenden für mindestens zwei Nächte nach Darwin gebracht wird. Neben den wirtschaftlichen Vorteilen für das Gesundheitssystem bestehen weitere Vorteile für Menschen mit QSL, deren Familienmitglieder und für das Gesundheitspersonal. Diese beinhalten die Entwicklung einer vertrauensvollen Beziehung zwischen der querschnittgelähmten Person, den Familienangehörigen und dem Spezialteam für QSL sowie die Möglichkeit, spontane (und geplante) Schulungen für Betroffene, Familienangehörige, Gesundheitspersonal und Pflege- und medizinisches Fachpersonal in abgelegenen Gebieten anzubieten. Das Outreach-Team erfährt so auch über die Schwierigkeiten und Bedürfnisse von Querschnittgelähmten in abgelegenen Gebieten und über örtliche Lösungsansätze für Probleme, wovon andere Gemeinden wiederum profitieren können.
mit Hilfe von adäquaten Schulungen und Supervision in der Lage ist, Menschen mit QSL fortwährend Unterstützung zu bieten. Viele CBR- Programme leisteten ebenfalls Unterstützung in Form von Initiativen der gegenseitigen Unterstützung (Peer Support) wie z. B. Selbsthilfegruppen (67 ). 118
Einen personenorientierten Ansatz verfolgen
Es ist ein Ansatz notwendig, bei dem Querschnittgelähmte (und gegebenenfalls ihre Familienangehörigen) zur Planung und Entscheidungs ndung beitragen können (55, 68). Eine Metasynthese von qualitativer Forschung zur Untersuchung der Erfahrungen von
Kapitel 5
Stärkung von Gesundheitssystemen
Querschnittgelähmten während der Erstrehabilitation hob hervor, dass sie sich geachtet und respektiert fühlten, wenn das Gesundheitspersonal: (i) sie während des gesamten Rehabilitationsprozesses als Partner behandelte; (ii) einen o enen und direkten Umgang mit ihnen p egte; (iii) Informationen mit ihnen teilte und (iv) sie in den Problemlösungs- und Entscheidungs ndungsprozess mit einbezog (17). Selbstmanagement-Ansätze sind entscheidend, um sicherzustellen, dass Querschnittgelähmte langfristig gesund bleiben (54). Bedingungen des Gesundheitssystems dienen dazu, die Bedeutung dieser Ansätze noch mehr hervorzuheben. Menschen mit QSL betonten, dass das Management von Darm, Blase und Haut zu den wichtigsten emen gehört, in denen sie geschult werden müssen, um das Selbstmangement zu fördern (54). Zusätzlich zu Schulungen und Trainings durch Gesundheits- und Rehabilitationspersonal gibt es für Betro ene verschiedene Möglichkeiten, sich Fähigkeiten und Wissen anzueignen. Das Internet kann eine gute Informationsquelle und ein nützliches Mittel für Querschnittgelähmte sein, um etwas über ihren Gesundheitszustand zu lernen, autonomer zu werden und eine aktive Rolle in der Gesundheitsversorgung und Rehabilitation einzunehmen. Beispielsweise hat der New Zealand Spinal Trust die “Spinal Essentials” entwickelt. Dies ist ein interaktiver Kurs, der online absolviert werden kann und gescha en wurde, um Querschnittgelähmte über die Anatomie der Wirbelsäule, medizinische Begri e in Verbindung mit QSL und möglicherweise entstehende Probleme aufzuklären und zu informieren (69). Die Forschung hat gezeigt, dass Querschnittgelähmte Anregungen von anderen Betro enen schätzen, sei es bei einem informellen Tre en mit anderen Betro enen bei Klinikaufenthalten oder bei formellen Tre en durch Peer-Mentoring, Unterstützung durch andere Betro ene und von anderen Betro enen angebotene Seminaren (17, 70). Von anderen Betro enen angebotene Programme können die Ergebnisse für
Querschnittgelähmte und ihre Familienangehörigen potenziell verbessern. Eine vergleichende Studie über ein Peer-Mentoring Programm für QSL in den USA hat gezeigt, dass die medizinischen Komplikationen nach Beendigung des Peer-Mentoring Programms tendenziell zurückgingen (71). Peer-Mentoren verfügen über ein gemeinsames Merkmal (d. h. QSL) und leisten die benötigte Unterstützung und Hilfe, indem sie Erfahrungen, Wissen und Fähigkeiten weitergeben. Peer-Mentoren können hilfreich sein: Um das Vertrauen bei Betro enen aufzubauen, die erst kürzlich eine QSL erlitten haben; um emen in Bezug auf die psychosoziale Anpassung anzusprechen; um Schulungen und Training über Selbstversorgung und Mobilität anzubieten; um Informationen und Rat zu Gesundheitserhaltungsstrategien und Prävention von Sekundärerkrankungen wie Dekubitus und Harnweginfektionen zu geben, und, falls nötig, um Überweisungen zu Fachkrä en im Gesundheitswesen einzuleiten. Schulungen durch andere Betro ene können in die unterschiedlichen Phasen der Gesundheitsversorgung und Rehabilitation integriert werden und in vielen verschiedenen Kontexten Anwendung nden. NGOs, Behindertenorganisationen und CBR-Programme haben diese Form des Trainings erfolgreich in Ländern mit niedrigen Nationaleinkommen angewendet. Organisationen wie Motivation führen Peer-Trainings für Rollstuhlfahrer in Ländern wie Malawi, Mosambik, Rumänien und Sri Lanka durch. Motivation bietet Kurse sowohl für Erwachsene als auch für Kinder über die Verwendung des Rollstuhls sowie die Förderung der Gesundheit und des Bewusstseins über Behindertenrechte an (72).
Den physischen Zugang zu Einrichtungen der Gesundheitsversorgung verbessern
Die BRK (21) de niert angemessene Vorkehrungen als „erforderliche und angemessene Änderungen und Anpassungen, die keine unverhältnismäßige oder unbillige Belastung 119
Querschnittlähmung – Internationale Perspektiven
darstellen und bei Bedarf in einem bestimmten Fall vorgenommen werden, um sicherzustellen, dass Menschen mit Behinderungen gleichberechtigt mit anderen sämtliche Menschenrechte und Grundfreiheiten in Anspruch nehmen oder ausüben können“. Angemessene Vorkehrungen wie breite automatische Türen, großzügige Untersuchungsräume, höhenverstellbare Untersuchungsliegen, rollstuhlgängige Waagen und niedrige Empfangstheken könnten den physischen Zugang zu Einrichtungen der Gesundheitsversorgung für Querschnittgelähmte verbessern.
Personal Menschen mit QSL benötigen Zugang zu einer Reihe von Fachpersonal, das in der Lage ist, sowohl allgemeine als auch spezielle Gesundheits- und Rehabilitationsdienstleistungen zu erbringen. Dieses Personal umfasst Ärzte (z. B. Notärzte, Hausärzte, Neurologen, Fachärzte auf den Gebieten Rehabilitation (Chirurgen, Urologen), Krankenp eger, Rettungssanitäter und Prothesen- und Orthesentechniker, Psychologen, Rehabilitations-Ingenieure, erapeuten (Beschä igungstherapeuten, Physiotherapeuten, Sprachtherapeuten), Sozialarbeiter und eine Vielfalt von Unterstützungskrä en, einschließlich Personal der gemeindenahen Gesundheitsversorgung und Rehabilitation.
Barrieren
Die vorhandenen Informationen reichen nicht aus, um fundierte Kommentare zu den weltweiten Herausforderungen in Bezug auf Personal in den Bereichen Gesundheitsversorgung und QSL zu machen. Die weltweite Knappheit an Personal in den Bereichen Gesundheit und Rehabilitation, insbesondere in Ländern mit niedrigen und mittleren Nationaleinkommen und in ländlichen sowie abgelegenen Gebieten (2, 65, 73, 74), weist darauf hin, dass die Anzahl an Fachkrä en für QSL unzureichend ist. Es kann deshalb nicht
gewährleistet werden, dass Querschnittgelähmte Zugang zur benötigten Versorgung haben. Es gibt nur wenige formelle Schulungsprogramme für Rehabilitationsfachkrä e in Ländern mit niedrigen und mittleren Nationaleinkommen. Eine Befragung in 114 Ländern hat gezeigt, dass in 37 Ländern keine Maßnahmen zur Ausbildung von Rehabilitationspersonal ergri en wurden (22). In Ländern, in denen Schulungen für Rehabilitationsfachkrä e vorhanden sind, decken die Lehrpläne das ema QSL o nicht gut ab. Einzelne Verö entlichungen weisen darauf hin, dass QSL zwar als ema in die Lehrpläne aufgenommen wurde, die Inhalte jedoch überwiegend in Vorlesungsreihen vermittelt werden und weniger Zeit in die praktischen Aspekte investiert wird. Befragungen zufolge stellen mangelnde Fachkenntnisse bei Dienstanbietern eine erhebliche Barriere für Menschen mit Behinderungen in Bezug auf die Versorgung mit unterstützender Technologie dar (75). Rehabilitationsexperten gaben in einer im amerikanischen Bundesstaat Maine durchgeführten Studie an, dass sie über keine oder nur sehr grundlegende Kenntnisse in Gebieten verfügen, die mit der Versorgung von unterstützender Technologie zu tun haben (76). Beschä igungstherapeuten auf dem Gebiet der Pädiatrie berichteten, dass sie eine unangemessene Ausbildung und unzureichende technische Unterstützung erhalten hatten, und dass sie sich die Versorgung in Bezug auf unterstützende Technologie nicht zutrauten (75). Die niedrige Inzidenz von QSL bedeutet auch, dass Gesundheitsfachkrä e, die beru ich mit Querschnittgelähmten in Kontakt kommen, o nicht ausreichend ausgebildet sind, um mit den fortwährenden Versorgungsbedürfnissen dieser Menschen umgehen zu können. Eine australische Studie zeigte, dass die Mehrheit der Teilnehmer beschränktes Wissen über QSL bei Fachleuten vor Ort als wesentliche Hürde für die Befriedigung ihrer Bedürfnisse wahrnahmen (5). Verschiedene Studien haben gezeigt, dass ein Mangel an Fachwissen über QSL bei Fachkrä en
120
Kapitel 5
Stärkung von Gesundheitssystemen
der primären Versorgung, die von vielen Betroffenen als Gesundheitsdienst bevorzugt werden, eine Barriere bei der Erbringung der präventiven und fortwährenden Gesundheitsversorgung bei QSL darstellt (48, 77–80). Artikel 4 und 26 der BRK heben die P ichten der Vertragsstaaten zur Förderung der Ausbildung von Fachpersonal und sonstigem Personal, das mit Menschen mit Behinderungen arbeitet, hervor (21).Um die Bedürfnisse von Menschen mit QSL abzudecken, müssen die Länder eine Reihe von Strategien in Betracht ziehen, um Kapazitäten bei den Arbeitskrä en im Gesundheitswesen und in der Rehabilitation zu schaffen. Diese Strategien umfassen Ausbildung und Schulung, Entwicklung von Fachwissen über QSL innerhalb des Landes, Verwendung von alternativen Methoden, um Fachwissen über QSL bereitzustellen sofern nicht vorhanden, Entwicklung von gemeinscha lichen Projekten zwischen Gesundheitsfachkrä en, Verbesserung von Qualität und E zienz bei der Dienstleistungserbringung und Einführung von Anreizen für Gesundheitsfachkrä e, um abgelegene Gebiete für sie attraktiv zu machen.
QSL, Gesundheit und Rehabilitation einschließlich unterstützender Technologie.
Barrieren abbauen
Ausbildungsprogramme für Rehabilitationsfachkräfte erstellen und ausbauen
Es gibt einen weltweiten Bedarf für die Erstellung von Ausbildungsprogrammen, um dem erheblichen Mangel an Rehabilitationspersonal entgegenzuwirken. Ausbildungsprogramme sollten auf allen Ebenen erstellt werden, Hochschulbildung (während und nach Abschluss des Studiums), mittlere Bildungsebene (Ausbildung) und Einstiegsprogramme (zielt auf Disziplinen wie gemeindenahe Gesundheitsversorgung und CBR ab) mit eingeschlossen. Ausbildungsprogramme für Rehabilitationspersonal sollten überarbeitet werden in Zusammenarbeit mit Berufsverbänden, Ausbildungsanbietern und Gesellscha en/ Verbänden für QSL zur Bestimmung der besten Integrationsmöglichkeit von Informationen über
Fortwährende beru iche Weiterentwicklung (Supervision eingeschlossen) ist notwendig, um Wissen und Fähigkeiten von bereits eingesetztem Gesundheitsversorgungs- und Rehabilitationspersonal zu erhalten oder zu erweitern. Dies kann in Verbindung mit der Registrierung und einer Zulassungslizenz stehen. In Australien wurde ein Dienstleistungsmodell zur Steigerung des Selbstvertrauens bei der Behandlung von Menschen mit QSL gegründet. Dabei wurden Gesundheitsfachkrä e aus ländlichen Gebieten ausgebildet und unterstützt (47). Es können verschiedene Vermittlungsarten verwendet werden, darunter persönlich, am Arbeitsplatz oder via Internet und auch Telemedizin/Telerehabilitation. Die Auswahl der Art hängt von Kontext und Dienstleistungsmodell ab (73). Manche Bedürfnisse bei der Gesundheitsversorgung bestehen nur bei Menschen mit QSL (z. B. autonome Dysre exie), während viele andere (z. B. Darm-, Blasen-, und Druckstellenmanagement) ebenfalls bei vielen weiteren Arten von Gesundheitsproblemen relevant sind. Die Integration und Erweiterung von Schulungen über emen, die für ein großes Spektrum von Gesundheitsproblemen relevant sind, sollte in Erwägung gezogen werden. Dies gilt ebenfalls für Strategien zur Förderung der Zusammenarbeit zwischen Gesundheitsversorgungs- und Rehabilitationspersonal (73, 81). Online-Kurse wie das im Jahr 2012 von der International Spinal Cord Society (ISCoS) gestartete Programm können dazu beitragen, Personal im Bereich QSL mit grundlegenden Informationen und Unterstützung in den Bereichen Gesundheitsversorgung und Rehabilitation zu versorgen (82). Internationale, regionale und nationale Berufsnetzwerke wie das International Network of Spinal Cord Injury Physiotherapists (SCIPT) können ebenfalls zur Verbesserung des 121
Fortwährende berufliche Weiterentwicklung unterstützen
Querschnittlähmung – Internationale Perspektiven
Austauschs von Ideen, Wissen und Ressourcen beitragen (83). Observerships, eine Initiative des International Spinal Cord Society Educational Committee, wurde gescha en, um es quali zierten Gesundheitsfachleuten zu ermöglichen, das Management in Zentren für QSL für den Zeitraum zwischen drei Wochen und drei Monaten zu beobachten (84).
Da die Dauer der stationären Behandlungen immer kürzer wird, stellt es für Rehabilitationsfachleute eine Herausforderung dar, die Dienste in einem immer kürzeren Zeitraum zu erbringen (71). Wie im Abschnitt „Dienstleistungserbringung“ oben hervorgehoben, können Unterstützung durch andere Betro ene, Mentoring, Beratung und Schulungen hilfreiche Methoden bei der Bereitstellung von Orientierungshilfen und Unterstützung von Querschnittgelähmten sein. Außerdem können sie helfen, bestehende Schwachstellen im Gesundheitssystem zu überwinden. Viele Organisationen wie gemeindenahe NGOs und Behindertenorganisationen haben Peer-basierte Unterstützungsprogramme eingerichtet. Spezialdienste für QSL haben ebenfalls Peer-basierte Programme eingeführt und sie in ihre medizinischen Versorgungs- und Rehabilitationsdienste integriert. Die Durchführung von Schulungen und Supervision ist eine wesentliche Voraussetzung für den Erfolg von Programmen, die von Beschä igen des Gesundheitswesens ohne fachlichen Hintergrund durchgeführt werden (71).
Beschäftigte ohne einschlägige Ausbildung einsetzen
alltäglichen Aktivitäten. In Nigeria wurde ein 12-wöchiges Programm zum Management von QSL entwickelt. Das orthopädische Krankenhaus hatte nur eine begrenzte Anzahl an Betten und konnte keine Patienten stationär über längere Zeiträume aufnehmen. Familienangehörige wurden abschnittsweise geschult, um den Mangel an erfahrenem und verfügbarem Personal auszugleichen (85). NGOs können ebenfalls Schulungen und Unterstützung für P egende von Querschnittgelähmten zur Verfügung stellen, mit Schwerpunkten auf der Gesundheitserhaltung, manuellen Handhabung und dem Umgang mit psychischen Problemen (86).
Gesundheitstechnologien Gesundheitstechnologien werden während allen Phasen der Gesundheitsversorgung von Querschnittgelähmten benötigt und stellen die Grundlage für eine sichere und wirksame Prävention, Diagnose, Behandlung und Rehabilitation dar (87). Gesundheitstechnologien können grob in die folgende Bereichen unterteilt werden: Notfallversorgung und grundlegende chirurgische Versorgung; Diagnostik und Labortechnik; diagnostische Bildgebung und medizinische Geräte (einschließlich unterstützender Technologie). Obwohl dieses ema auch in anderen Abschnitten behandelt wird, konzentriert sich dieser Abschnitt auf unterstützende Technologie und Rollstühle.
Barrieren
Sicherstellen, dass Familienangehörige entsprechend geschult und unterstützt werden
Familienangehörige können als wertvolle Ressourcen dienen bei, u. a., der Unterstützung von Menschen mit QSL beim Zugang zu Versorgung, zur Förderung der Implementierung von Rehabilitationsprogrammen und bei der Bereitstellung von Unterstützung bei 122
Viele Länder sind aufgrund von Barrieren in Bezug auf Produktion, Vertrieb und Instandhaltung außerstande, auf die Bedürfnisse von Querschnittgelähmten an unterstützender Technologie zu reagieren. In vielen Ländern mit niedrigen und mittleren Nationaleinkommen wird unterstützende Technologie nur im kleinen Rahmen produziert und vertrieben und in manchen Fällen ist sie überhaupt nicht verfügbar. (50, 88). Viele Länder haben nur beschränkt Zugri auf die zur Produktion von technischen
Kapitel 5
Stärkung von Gesundheitssystemen
Hilfsmitteln benötigten Materialien und Ausrüstung. Die Nachfrage nach unterstützenden Technologien kann in Entwicklungsländern eingeschränkt sein aufgrund der geringen Kaufkra der potentiellen Nutzer. Ein weiterer Grund ist, dass sich die Nutzer nicht der Existenz und Vorteile der Hilfsmittel bewusst sind. Viele Länder, deren Ressourcen begrenzt sind, sind auf Spenden von internationalen Organisationen und NGOs angewiesen. Dieses Modell wird häu g zur Ausstattung und Weitergabe von generalüberholten Rollstühlen in Ländern mit einem niedrigen Nationaleinkommen angewendet. Obwohl diesem Ansatz gute Absichten zugrunde liegen und er die kostengünstige Verteilung einer großen Anzahl von Rollstühlen ermöglicht, unterliegt diese Methode den unten beschriebenen Einschränkungen. Sie ist auf lange Sicht gesehen nicht nachhaltig im Hinblick auf die Entwicklung der Kapazitäten vor Ort (89). Unterstützende Technologie ndet nicht in allen Kontexten Anwendung; so ist z.B. ein Rollstuhlmodell, das für Querschnittgelähmte in Ländern mit einem hohen Nationaleinkommen angemessen ist, in Ländern mit einem niedrigen Nationaleinkommen möglicherweise ungeeignet (18). Zudem kann auch das Niveau der Dienstleistungserbringung, die mit der Spende von unterstützender Technologie einhergeht, zwischen den unterschiedlichen Organisationen sehr stark voneinander abweichen (88). Auch werden Hilfsmittel o ohne adäquate Einführungen über die Verwendung und ohne Unterstützung der Nutzer verschrieben (56, 90), was wiederum eine Reihe von Konsequenzen haben kann. Wenn unterstützende Technologie abgelehnt oder darauf verzichtet wird, kann dies auf ungedeckte Bedürfnisse hinweisen. Raten, die die Ablehnung von unterstützender Technologie zeigen, waren während des ersten Nutzungsjahres und dann wieder während des fün en Nutzungsjahres am höchsten (91). Veränderungen der Nutzerbedürfnisse, eine mangelha e Leistung des Geräts (im Sinne von E zienz,
Zuverlässigkeit, Strapazierfähigkeit, Komfort, Sicherheit oder Benutzerfreundlichkeit) sowie eine mangelnde Einbeziehung des Nutzers beim Auswahlprozess können dazu führen, dass auf den Gebrauch von unterstützender Technologie verzichtet wird (91). Es ist wahrscheinlich, dass die Art des Geräts und das Niveau der QSL eine Rolle dabei spielen, wenn unterstützende Technologie abgelehnt wird (92).
Barrieren abbauen
Um adäquate technische Hilfsmittel in Entwicklungsländern zur Verfügung stellen zu können, sind kostengünstige und nachhaltige Strategien erforderlich. Ob der jeweilige Ansatz angemessen ist, hängt vom Kontext eines jeden Landes ab und kann aufgrund der verschiedenen Arten von technischen Hilfsmitteln variieren. Faktoren, die es zu beachten gilt sind Input ( nanzielle und technische Anforderungen), Nachhaltigkeit (Potenzial für etablierte Produktion ohne externe Beiträge oder mit langfristigen, tragfähigen Beiträgen), Eignung (wie gut kann das Hilfsmittel die Bedürfnisse des Nutzers befriedigen) und Ein uss (Menge, die in einem bestimmten Zeitraum produziert und bereitgestellt werden kann) (88). Geeignete Technologie setzt voraus, dass Merkmale in der Gestaltung an das persönliche Umfeld, die Bedürfnisse und die Präferenzen des Nutzers angepasst werden (93). Probleme vor Ort wie unwegsames Gelände, ein beschränkter Zugang zu Elektrizität und die Bescha ung von Geräteteilen im Fall eines Defekts müssen berücksichtigt werden (18, 88, 94). Verschiedene Organisationen haben Geräte zur Unterstützung der Mobilität für Entwicklungsländer entwickelt, mit welchen viele der bestehenden Probleme vor Ort gelöst werden können (72, 95). Normen können die Qualität von unterstützender Technologie verbessern, um somit die Zuverlässigkeit von Produkten zu verbessern und potenzielle Risiken für die Nutzer zu reduzieren (96). Die 123
Geeignete Technologie konzipieren
Querschnittlähmung – Internationale Perspektiven
Internationale Organisation für Normung (ISO) gibt Normen für elektrische und manuelle Rollstühle und Roller sowie Transportnormen im Zusammenhang mit dem Transport von Personen im Rollstuhl in Bussen oder Kleinbussen vor (96). Diese Normen sind jedoch nicht unbedingt in allen Kontexten anwendbar und es ist wichtig, nationale Standards zu entwickeln, die Faktoren wie die persönliche Umwelt und Nutzermerkmale berücksichtigen (18, 97).
und Produkte auf der nationalen, regionalen und kommunalen Ebene bereitstellen zu können. Es werden geeignete Dienste benötigt, um Menschen bei der Auswahl, beim Kauf und beim Erlernen des Gebrauchs von technischen Hilfsmitteln zu unterstützen. Diese Dienste beinhalten: Bewertung und Verschreibung; Auswahl und Anpassung; Einweisung über den Gebrauch und Unterstützung bei der Verwendung des Hilfsmittels; Folgetermine, um einen sicheren und e zienten Gebrauch zu gewährleisten sowie fortwährende Instandhaltung, Reparaturen und Ersatzteilservice. Wenn es keinen umfassenden Service gibt, kann nicht angemessen auf die sich mit der Zeit verändernden Bedürfnisse reagiert werden. Dies kann dazu führen, dass ein Nutzen nicht mehr gegeben ist und der Gebrauch von technischen Hilfsmitteln möglicherweise abgelehnt wird (89). Eine Studie in Guatemala, die die Wahrnehmung von Betreuungspersonen auswertete, die gespendete Rollstühle für ihre behinderten Kinder erhalten hatten (94), hat gezeigt, dass sie die Rollstühle einerseits als hilfreich empfunden hatten. Andererseits merkten sie jedoch auch an, dass die Rollstühle in Kooperation mit Dienstanbietern vor Ort zur Verfügung gestellt werden sollten, damit die Anbieter beim Gebrauch auch Unterstützung leisten können (vgl. auch Kasten 5.3).
Umfassende Bereitstellung von Diensten
Auswahl geeigneter Modelle für Produktion und Vertrieb
Verschiedene Produktionsmodelle können in Ländern mit niedrigem Nationaleinkommen verwendet werden, um die Verfügbarkeit von unterstützender Technologie zu verbessern. Kleinere Werkstattmodelle beispielsweise beinhalten die Etablierung von Herstellungsanlagen, die eine verbesserte Nachhaltigkeit mit sich bringen. Es werden dadurch außerdem Arbeitsplätze vor Ort gescha en (Menschen mit Behinderungen eingeschlossen) und es können Produkte angeboten werden, die günstiger und an die Umwelt vor Ort besser angepasst sind (89, 98). Der Erfolg solcher Modelle variierte jedoch in Ländern mit einem niedrigen Nationaleinkommen, da viel Zeit und nanzielle Investitionen zum Au au und Erhalt notwendig sind. Dazu kommt, dass sie o nicht auf die gesamten Bedürfnisse der Bevölkerung reagieren können (88). Manche Länder wie Indien und China verfügen über die Kapazitäten, um im größeren Stil zu produzieren
Kasten 5.3. Räder, die Leben verändern - verbesserte Dienste für Rollstuhlfahrer in Rumänien Der Bedarf an geeigneten Rollstuhldiensten in Rumänien steigt jedes Jahr weiter an. Es wurde geschätzt, dass 2010 “jede fünfte Person, die einen Rollstuhl benötigte, über keinen verfügte…Diejenigen, deren Bedürfnissen nicht nachgekommen werden konnte, sind entweder völlig bewegungsunfähig oder mussten selbst zusehen wie sie zu Rande kommen“ (99). Die Motivation Romania Foundation (MRF) wurde 1995 gegründet, um nachhaltige Programme zur Steigerung der Lebensqualität von rumänischen Behinderten zu etablieren und unterstützte mehr als 9.000 Kinder und Erwachsene mit einer eingeschränkten Mobilität in Rumänien beim Zugang zu einem umfassenden Dienstleistungspaket.
Fortsetzung auf der nächsten Seite… 124
Kapitel 5
Stärkung von Gesundheitssystemen
… Fortsetzung Das MRF Rollstuhlprogramm wuchs von ursprünglich 20 Rollstuhlfahrern auf ca. 1000, die jährlich versorgt werden. Sie erhalten Einweisungen durch Peer-Gruppen über die Verwendung von geeigneten Mobilitätshilfen und über unabhängiges Leben. MRF Rollstühle wurden ursprünglich über Spenden und Zuschüsse finanziert. Inzwischen werden sie teilweise auch von der National Health Insurance Agency (NHIA) finanziert, welche 16−30% des gesamten Bedarfs abdeckt. In den Jahren 2004, 2009 und 2011 trug die United States Agency for International Development (USAID) finanziell maßgeblich zur Steigerung der Kapazitäten des MRF-Rollstuhldienstes bei. Mit Hilfe der Finanzierung konnten sieben regionale Teams unterstützt werden. Zu jedem Team gehörten ein Rollstuhl-Techniker/Trainer für autonome Lebensführung (Rollstuhlfahrer) und ein Physiotherapeut. Sie stellten die folgenden Dienste zur Verfügung:
■ Bewertung und Verschreibung von Rollstühlen: Dies umfasst personalisierte Messungen, um sicherzustellen, dass die Rollstühle den individuellen Bedürfnissen jedes Nutzers gerecht werden.
■ Bereitstellung von Rollstühlen und speziell angepassten Sitzen: Es werden Rollstühle sowohl mit als auch ohne Anpassungen für eine Vielfalt von Rollstuhlfahrern zur Verfügung gestellt. Kinder mit Zerebralparese werden gezielt mit speziellen Sitzvorrichtungen ausgestattet. ■ Training für eine autonome Lebensführung: Training durch Peers steht für Rollstuhlfahrer zur Verfügung und beinhaltet Schulungen zur Benutzung des Rollstuhls, Körperpflege, Selbstmangement (z. B. Prävention und Management von Dekubitus und Harnweginfektionen), Sexualität und Inklusion, Beratung und Unterstützung durch Peer-Gruppen. ■ Rollstuhlsport ■ Zugänglichkeit von Gebäuden: Die erste nationale elektronische Ressource für rollstuhlzugängliche Gebäude in Rumänien (100, 101). Große Herausforderungen müssen überwunden werden, bevor mehr Rumänen mit eingeschränkter Mobilität Zugang zu geeigneten Rollstühlen sowie die notwendige Einweisung erhalten. Rumänen, die Rollstühle benötigen, haben alle fünf Jahre Anspruch auf einen Rollstuhl– und zwar zum Grundpreis, den die NHIA an staatlich geprüfte Händler zahlt. Eine Finanzierungsbewilligung kann viele Monate dauern und die individuellen Bedürfnisse eines jeden Nutzers werden nicht berücksichtigt, da dieser Preis nicht die Bewertung, Anpassung oder die Einweisung über die Rollstuhlbenutzung beinhaltet. MRF hat versucht, diese Herausforderungen auf verschiedene Arten zu meistern, nämlich:
■ Bei Verschreibungspezialisten wurde mehr Bewusstsein über eine angemessene Rollstuhlversorgung geschaffen. Die MRF veröffentlichte im Jahr 2010 die WHO-ISPO-USAID Guidelines on the provision of manual wheelchairs in less-resourced settings (Richtlinien zur angemessenen Rollstuhlversorgung in ressourcenarmen Gebieten). 2011 organisierte die MRF den ersten Ausbildungsworkshop für Spezialisten die Rollstühle verschreiben und plant nun, dieses Ausbildungsprogramm landesweit einzuführen, um die Versorgung mit adäquaten Rollstühlen in Rumänien zu verbessern. Im Jahr 2012 nahm die MRF einen neuen Beruf in den Romanian Code of Occupations (COR) auf – Techniker für die Beurteilung, Verschreibung und Anpassung von Rollstühlen. Momentan werden ein offiziell anerkannter Ausbildungslehrplan und –ein entsprechendes Programm für diesen Beruf entwickelt, basierend auf dem WHO Bildungsprogramm für Rollstuhldienste (102). ■ Mit Hilfe von Spendern wurde ein Rollstuhlfonds eingerichtet, um eine angemessene Versorgung und schnelle Bereitstellung zu sichern. ■ Es wurden Gelder von internationalen Spendern gesammelt, um den Bedarf mittelfristig zu decken. Durch ihren Einsatz zur Überwindung von Problemen in der Rollstuhlversorgung in Rumänien, gibt die MRF mehr Menschen mit einer eingeschränkten Mobilität Zugang zu den benötigten Rollstühlen. Dadurch wird es diesen Personen ermöglicht, die notwendigen Fähigkeiten und das Vertrauen zu entwickeln, um an Bildung, Arbeit und Leben in der Gemeinschaft teilzuhaben. Quelle (101).
125
Querschnittlähmung – Internationale Perspektiven
Publikationen wie „Guidelines on the provision of manual wheelchairs in less-resourced settings“ liefern nützliche Informationen und Empfehlungen zur Erbringung von Dienstleistungen (18). Viele Informationen können auch den Erfahrungen von Ländern entnommen werden, die über umfassende Versorgungssysteme verfügen (45). In den USA nanziert beispielsweise der Assistive Technology Act von 1998 in jedem Staat Programme, um ein großes Spektrum an Diensten bereitzustellen, darunter Vorführzentren, Kreditprogramme, technische Unterstützung sowie die Erreichung von ländlichen Bevölkerungen (103). Vorführungszentren und Kreditbanken können potenziell das Bewusstsein der Nutzer über vorhandene unterstützende Technologie (104) steigern, das Wissen und die Fähigkeiten von Gesundheitsfachkrä en verbessern und Entscheidungs ndungsprozesse unterstützen (104). Betro ene können technische Hilfsmittel in ihrer persönlichen Umwelt ausprobieren, bevor sie darüber entscheiden, ob sie ihren Bedürfnissen entsprechen (91).
Gesundheitsinformationssysteme Wie in Kapitel 2 hervorgehoben, sind in vielen Ländern grundlegende Informationen über QSL nicht bekannt (105). Informationen über QSL bezüglich des einzelnen Betro enen, der Dienstleistungen und der Bevölkerung sind zwingend erforderlich, um Planungs- und Budgetierungsprozesse im Gesundheitssektor zu ermöglichen, um Bemühungen zur Verletzungsprävention und Gesundheitsförderung zu leiten, um weiterführende Forschung in die richtige Richtung zu lenken, und um Rehabilitationsergebnisse zu verbessern (29, 106). Daten sollten auf der individuellen, dienstleistungsbezogenen und bevölkerungsbezogenen Ebene folgendermaßen erhoben werden: 1. Auf individueller Ebene sollten die Informationen Alter, Geschlecht, Art oder Ursache der Verletzung, Verletzungszeitpunkt, Krankenhausaufenthalt (in Tagen), Komplikationen, damit verbundene Verletzungen, Arten 126
von erhaltenen Diensten, Behandlungsresultate, neurologischer Status, Entlassungsort und erneute Krankenhausaufenthalte umfassen (106 –110). 2. Auf medizinischer Ebene und auf Ebene der Rehabilitationsdienste werden Informationen über Dienste, Ergebnisse von Diensten sowie über Kosten und Vorteile von medizinischen und Rehabilitationsdiensten auf der Einrichtungsebene benötigt (2, 65, 111). Die Informationen können Kosten, Personal, Einrichtungsressourcen (z. B. Betten), Arten von Diensten, Häufigkeit der Dienste, Überweisungen und Wartelisten beinhalten. Alle Informationen können aus bereits verwendeten und aggregierten individuellen Fortschrittsdaten entnommen werden, sowohl zur Identifizierung von wirtschaftlichem Nutzen und Effizienz von Diensten, als auch um zur Entwicklung von Prioritäten in der Gesundheitsforschung, Finanzierung und Mittelzuweisung beizutragen (112–115). Außerdem sollten die Ergebnisse und der Einfluss (Ursache und Wirkung) von politischen Konzepten, Programmen und medizinischen und Rehabilitationsdiensten in regelmäßigen Abständen bewertet werden (116). 3. Auf der Bevölkerungsebene können Datensammlungen zur Bestimmung von Inzidenz, Prävalenz und Ätiologie von QSL verwendet werden, sowie um Trends festzulegen. Es ist ebenfalls wichtig, Informationen über die Barrieren und Förderfaktoren zu erheben, die eine Person erfährt in Bezug auf Gesetzgebung und politische Konzepte, organisatorische Strukturen, über Gesundheit und Rehabilitation hinausgehende Dienste (z. B. Transport) sowie Einstellungen (109, 117). Die Einrichtung von regionalen und/oder nationalen QSL-Registern ist wichtig (29). Es muss das Ziel von Ländern sein, Informationssysteme durch die Identi zierung von Lücken in der Verfügbarkeit und Qualität von Daten sowie
Kapitel 5
Stärkung von Gesundheitssystemen
durch Priorisieren der benötigten Informationsarten zu entwickeln. Um den Abgleich und die Vergleichbarkeit von Daten auf der internationalen, regionalen und nationalen Ebene zu ermöglichen, ist Konsistenz in Bezug auf Rahmenbedingungen und Terminologie notwendig (106). Das zweite Kapitel liefert Informationen über den internationalen Rahmen, welcher es Gesundheitssystemen erleichtern soll, Informationen über QSL zu sammeln.
Finanzierung und Erschwinglichkeit Barrieren Querschnittgelähmte benötigen ab dem Zeitpunkt der Verletzung fortlaufenden Zugang zur medizinischen Versorgung und Rehabilitation. Deshalb können sowohl zu Beginn als auch über die gesamte Lebensdauer erhebliche Kosten in Verbindung mit der QSL entstehen (40, 118). Diese Kosten variieren je nach Kontext und Art der benötigten Versorgung (40) und können aufgrund unterschiedlicher Strukturen der Gesundheits- und Finanzierungssysteme nicht für alle Länder verallgemeinert werden. Mehr Informationen dazu liefert Kapitel 2. Menschen mit QSL müssen o für zusätzliche Gesundheitsdienste und individuelle Direktzahlungen au ommen, was eine große zusätzliche Belastung für die Betro enen und deren Familienangehörige darstellt (79). Im Allgemeinen ist die Armutsrate bei Menschen mit Behinderungen höher als bei nicht-Behinderten (2) und deshalb können behinderte Menschen o nicht für die Kosten in Bezug auf Gesundheitsversorgung, Rehabilitation und unterstützende Technologie au ommen. Eine Studie in Nigeria berichtete (eine der wenigen, die in Ländern mit einem niedrigen Nationaleinkommen durchgeführt wurden), dass für 41.1% der Mensch mit QSL, die an der Studie teilnahmen, die Kosten für die Akutversorgung mehr als 50% ihres jährlichen Einkommens ausmachten (119). „Kosten“ umfassten in dieser Studie sowohl direkte Kosten (z. B. Gebühren für den
Krankenhausaufenthalt) als auch indirekte Kosten (z. B. Einkommenseinbußen). Wenn die Kosten für technische Hilfsmittel nicht von Drittparteien gedeckt oder bezuschusst werden, kann dies zur Folge haben, dass Querschnittgelähmten, insbesondere in Ländern mit niedrigem und mittlerem Nationaleinkommen, der Zugang verwehrt ist (120). Eine Studie in Uganda über körperlich behinderte Menschen (QSL eingeschlossen) hat gezeigt, dass die größte Hürde beim Zugang zu technischen Hilfsmitteln nanzieller Art war – die Kosten für den Kauf, die Instandhaltung und Kosten für die Ersatzteile waren zu hoch (121). Eine Person, die gerade für hohe Kosten für die medizinische Versorgung und Rehabilitation nach einer traumatischen Rückenmarksverletzung au ommen musste, verfügt möglicherweise über keine weiteren nanziellen Mittel, um einen geeigneten Rollstuhl zu kaufen und instand zuhalten. Finanzielle Barrieren spielen jedoch ebenfalls in Ländern mit einem hohen Nationaleinkommen eine Rolle. In den USA wird beispielsweise die Häl e der technischen Hilfsmittel ohne nanzielle Unterstützung von Dritten erworben (19). Regierungen, NGOs oder Krankenversicherungsgesellscha en zahlen oder versichern die Versorgung mit „medizinisch notwendiger“ unterstützender Technologie. Kosten für Dienste und eine begrenzte Abdeckung von Gesundheitsproblemen kann den Zugang zu dieser Technologie einschränken (19). Menschen mit Behinderungen erfüllen häu g nicht die Voraussetzungen für den Anspruch auf bestimmte Dienste und werden mit Einschränkungen, Verwaltungsarbeit, Regeln, Vorschri en sowie mit Ablehnung und Verweigerung konfrontiert. Dies kann zu Ungerechtigkeit bei der Art der Technologien führen, die von Menschen aus niedrigeren Gesellscha sschichten erworben werden können. Menschen mit QSL aus niedrigeren Gesellscha sschichten beispielsweise, erhielten eher einen standardisierten Rollstuhl als einen Rollstuhl, der an ihre Bedürfnisse angepasst war (93). 127
Querschnittlähmung – Internationale Perspektiven
Barrieren abbauen
Länder sollten sicherstellen, dass adäquate Mittel zur Finanzierung von Gesundheitsdiensten zur Verfügung stehen, um zu gewährleisten, dass alle Menschen, Querschnittgelähmte eingeschlossen, Zugang zu den benötigten Diensten haben. Verschiedene Finanzierungsoptionen können potenziell die Verfügbarkeit von Gesundheitsdiensten für die allgemeine Bevölkerung sowie für Menschen mit QSL steigern (2). Diese Optionen beinhalten: Bescha ung ausreichender Ressourcen für Gesundheit durch größere E zienz bei der Ressourcenmobilisierung, Verlagerung der Schwerpunkte im Staatshaushalt, innovative Finanzierung und Verbesserung der Gesamte zienz des Gesundheitssystems. Eine rationalisierte und koordinierte Bereitstellung von Diensten kann beispielsweise Verwaltungskosten senken, Doppelarbeit sowie Verzögerungen in der Gesundheitsversorgung und Rehabilitation vermeiden, denn diese Verzögerungen können eine langwierigere und kostenintensivere Gesundheitsversorgung notwendig machen (z. B. im Fall von Dekubitus). Strategien für einen verbesserten Zugang zu unterstützenden Geräten umfassen die Förderung der lokalen Produktion, die Senkung von Einfuhrzöllen und -steuern und die Optimierung von Mengenvorteilen auf der Basis von tatsächlichen Bedürfnissen (2). Die Gründe für die Ablehnung des Geräts und die damit verbundenen Kosten lassen darauf schließen, dass Verleih, Vermietung und Recycling von Ausrüstung während des Zeitraums, in welchem das Gerät am ehesten abgelehnt wird, in Betracht gezogen werden sollten (91). Geldmittel, die durch Verleih- oder Vermietungsprogramme gespart wurden, können zur Unterstützung von Finanzierungssystemen für langfristige Bedürfnisse verwendet werden (91). In den nationalen oder staatlichen Versicherungsverträgen einiger Länder bieten zwingende Ha p ichtversicherungen oder freiwillige Spendenmodelle Entschädigung für Menschen mit 128
traumatischer QSL, beispielsweise als Folge eines Straßenverkehrsunfalls. In der Schweiz hat man im Fall einer traumatischen QSL Anspruch auf eine beträchtliche Summe zur Kostendeckung, wenn man Mitglied einer Gönnervereinigung ist, die von der Schweizer Paraplegiker-Sti ung geleitet wird. Der Mitgliederbeitrag dafür beläu sich auf eine kleine jährliche Spende. Jeder kann die Mitgliedscha beantragen, unabhängig von Wohnort, Unfallort oder Behandlung (122). In Neuseeland bietet die Accident Compensation Corporation für alle Einwohner und Besucher Neuseelands nanziellen Schutz bei nicht selbst verschuldeten Verletzungen (unabhängig von der Ursache) (123). Sie wird durch Steuererhebungen auf Ersparnisse, Gehaltszahlungen, Ausgaben für Kra sto und Fahrzeugversicherungsgebühren sowie durch andere staatliche Förderungsmittel nanziert. Da es viele Ursachen für QSL gibt, sollten weitere Mechanismen gescha en werden, um zu gewährleisten, dass Menschen vor den nanziellen Risiken, die durch die Nutzung von Gesundheitsversorgungs- und Rehabilitationsdiensten entstehen können, geschützt werden. Aufgrund der hohen Kosten in Verbindung mit QSL ist eine erschwingliche Krankenversicherung essentiell, um eventuell notwendige Direktzahlungen während der Versorgung so niedrig wie möglich zu halten. Invalidenversicherungen können eine sichere und dauerha e Unterstützungsquelle für Dienste sowie Menschen mit Behinderungen darstellen (z. B. (124)). Internationale Zusammenarbeit ist erforderlich, da viele Entwicklungsländer möglicherweise nicht über die notwendigen Ressourcen verfügen, um Spezialdienste für Menschen mit QSL einzurichten. Artikel 32 der BRK hebt die Notwendigkeit für die Vertragsstaaten hervor, gemeinsam mit anderen Staaten und in Zusammenarbeit mit internationalen und regionalen Organisationen und Zivilgesellscha en Maßnahmen zu ergreifen. Sie dienen dazu, wirtscha liche und technische Unterstützung zu leisten, und Gesundheitsversorgung, Rehabilitation
Kapitel 5
Stärkung von Gesundheitssystemen
und unterstützende Technologie zugänglich zu machen (21).
Forschung Forschung im Bereich der medizinischen Versorgung und Rehabilitation von QSL wird seit Jahrzenten betrieben. Daraus resultierend wurden viele Fortschritte erzielt, die Querschnittgelähmten eine hohe Lebensqualität und eine ebenso hohe Lebenserwartung wie dem Rest der Bevölkerung ermöglichten. Es gab bemerkenswerte Innovationen in der unterstützenden Technologie, von denen Querschnittgelähmte pro tierten, die dazu Zugang haben. Fortschritte in der Rollstuhltechnologie beispielsweise haben gezeigt, dass man den Bedürfnissen von Querschnittgelähmten durch Kipp- und Neigungsmechanismen sowie verstellbare Fußstützen besser gerecht werden konnte in Bezug auf Körperhaltung, Funktionsfähigkeit (einschließlich physiologischer Funktionsfähigkeit), spastische Lähmungen, Kontrakturen, Druckstellen-Management, Komfort und weitere emen (125). Die Entwicklung von virtuellen Umgebungen und Robotertechnik (126, 127) sowie Computertechnologie wie Sprach- oder Augenbewegungserkennung sowie die Einführung von alternativen Tastaturen (128, 129) half dabei, Rehabilitation und Teilhabe an Alltagsaktivitäten zu ermöglichen. Forschung im Bereich der neurologischen Kontrolle von Geräten führte zur Entwicklung von Armprothesen, die von den Nutzern dadurch gesteuert werden, dass sie daran denken, was sie tun möchten (120). Es gibt mehrere neue potenzielle Behandlungsmethoden für QSL. Manche dieser Behandlungsmethoden werden noch in Studien mit Tierversuchen erforscht, während andere sich in der prä-klinischen Phase der Forschung be nden. Wiederum andere Behandlungen, die Potenzial aufweisen, werden momentan an Menschen getestet (130 –133). Behandlungsmethoden wie Stammzellentherapien sind hochumstritten
Neue Behandlungsmethoden
aufgrund der damit einhergehenden Probleme in Bezug auf Wissenscha , Sicherheit und Ethik (vgl. Kasten 5.4). Trotz der Bemühungen von Wissenscha lern ist derzeit keine Behandlungsmethode bekannt, die das Rückenmark wiederherstellen oder die Verletzung heilen könnte. Forscher der Biomedizin glauben generell, dass es wahrscheinlich ist, dass eine Kombination von neuen Behandlungsmethoden und bestehender medizinischer Versorgung und Rehabilitation eines Tages einen tatsächlichen und bedeutenden Durchbruch dahingehend erzielen wird, dass das Rückenmark wiederhergestellt oder geheilt werden kann (133). Menschen mit QSL und ihre Familien, die in der Ho nung auf Heilung nach neuen Behandlungsmethoden suchen, sollten sich der Komplexität und Ungewissheit auf diesem Gebiet bewusst sein. Sie sollten dazu ermutigt werden, bei verschiedenen Quellen Rat zu suchen, wie beispielsweise bei klinischen Fachkrä en, angesehenen Wissenscha lern und Menschen mit QSL, die möglicherweise mit einigen dieser Behandlungsmethoden ihre Erfahrung gemacht haben.
Weitere Forschung
Für die meisten einschlägigen Modelle der Dienstleistungserbringung für Menschen mit QSL ist keine ausreichende Evidenz vorhanden. Es sind weitere Studien im Bereich der Gesundheitsdienstleistungen notwendig, um die Zugangsraten zu bestimmen (19), und um kostene ziente und gerechte Modelle zur Leistungserbringung zu identi zieren mit dem Ziel, den Zugang zu verbessern. Es werden ebenfalls auf Forschungsdaten gestützte Richtlinien von einem breiten Spektrum von Involvierten benötigt, darunter die Betro enen selbst, Gesundheitspersonal sowie Regierungen und Einrichtungen zur Finanzierungsförderung. Ohne diese Richtlinien wird es Gesundheitsfachleuten sowie anderen Beteiligten nur eingeschränkt möglich sein, fundierte Entscheidungen im klinischen Bereich über angemessene Interventionen zu tre en. Sie werden so außerstande sein, Menschen mit QSL 129
Querschnittlähmung – Internationale Perspektiven
Kasten 5.4.
Behandlung mit Stammzellen – zwischen Hype und Hoffnung
Die Entdeckung von Nervenstammzellen und die raschen Fortschritte in der Stammzellenbiologie ließen Hoffnung aufkommen, dass eine Behandlung mit Stammzellen zur Heilung von schweren neurologischen Krankheiten, einschließlich QSL, beitragen könnte. Diese Entdeckungen haben ebenfalls eine Geschäftsmöglichkeit für Unternehmer in weniger stark regulierten Rechtssystemen geschaffen. Bei dieser Geschäftsmöglichkeit handelt es sich um den Verkauf von Stammzellenbehandlungen an Menschen mit schweren Erkrankungen, die verzweifelt nach Heilungsmöglichkeiten suchen. Dadurch wurde der Begriff „Stammzellen-Tourismus“ bekannt. Diese Art von Behandlungen wurde weder gründlich getestet und in sorgfältig konzipierten klinischen Studien ausgewertet, noch gibt es dafür eine behördliche Zulassung durch anerkannte Stellen wie die United States Food and Drug Administration. Verschiedene Variablen haben zu einer raschen Entwicklung des Stammzellen-Tourismus beigetragen (134). Zu diesen gehört die bestehende erfolgreiche Anwendung von Stammzellenbehandlungen bei hämatologischen Krankheiten wie Leukämie. Unternehmer mit Zugang zu klinischen Zellverarbeitungseinrichtungen können so Zellen für eine Reihe von nicht-fundierten Indikationen liefern. Zusätzlich dazu hat der Zugang zum Internet nie dagewesene Werbemöglichkeiten eröffnet (135 ). Außerdem ließ die Verfügbarkeit von Behandlungen in Ländern wie China und Indien den medizinischen Tourismus wachsen (136 ). Anbieter der Stammzellentherapie argumentieren, dass Menschen mit QSL eine effiziente Behandlung verweigert wird aufgrund von hinderlichen regulatorischen Anforderungen, übervorsichtigen Wissenschaftlern und rigiden Forschungsdesigns, randomisierte Studien und Kontrollstudien inbegriffen (137 ). Außer anekdotenhaften Berichten haben diese Anbieter wenig zu den unverzichtbaren Daten beigetragen, die gesammelt werden müssen, bevor Stammzellen sicher und wirksam eingesetzt werden können. Eine konsequente Langzeitnachsorge zur Bestimmung der realen Ergebnisse der Behandlungen gibt es oft nicht. Wenn eine Behandlung mit Stammzellen neben einer erneuten Rehabilitation durchgeführt wird, ist es schwierig festzustellen, ob die Stammzellen oder die Rehabilitation die Ursache für eine eventuelle Verbesserung der Funktionsfähigkeit gewesen ist. Eine der ersten Veröffentlichungen über Stammzellentourismus beinhaltete neurologische Untersuchungen von Menschen mit QSL, die vor und nach der direkten Implantierung von Rückenmark fötale Zellen erhielten (138). Nachfolgende Berichte dieses Versuchs durch chinesische Versuchsleiter sollten klarstellen, welche Betroffenen von der Transplantation profitieren können (139). Es wurden schwere Komplikationen nach der Transplantation von Föten-Stammzellen geschildert (140). Zahlreiche gemeinnützige Organisationen und Regierungsorganisationen veröffentlichten Stellungnahmen, in denen die Risiken des Stammzellentourismus beschrieben wurden. Sie erstellten ebenfalls Bildungsinstrumente für Menschen mit QSL und deren Familien, die vor der Stammzellenbehandlung in Betracht gezogen werden sollten. Es herrscht Einigkeit darüber, dass: Klinische Studien niemals von Patienten oder deren Familien mitfinanziert werden sollten; Behandlungen angemessen gekennzeichnet werden sollten; pharmakologische oder toxikologische Daten verbessert werden sollten, um eine angemessene Evidenz und Effizienz aufzubauen; und, dass eine Stammzellenbehandlung fragwürdig ist, wenn eine einzige Behandlungsmethode für eine Reihe von Erkrankungen angepriesen wird (141). Es besteht die Gefahr, dass legitime Stammzellenforschung aufgrund von unseriösen Forschern in Verruf gerät, weil sie Behandlungen anbieten, die nicht auf Daten gestützt sind. Als Ergebnis von gründlichen Untersuchungen der Regierung wurden einige Kliniken geschlossen, darunter einige, die sich mit schweren Fällen von unerwünschten Ergebnissen befassten (142). Andere wiederum mussten Strafen zahlen aufgrund von betrügerischer Werbung. Inzwischen stehen Informationen zur Aufklärung zur Verfügung, um Betroffene über die Risiken von Stammzellenbehandlungen zu informieren (143). Besondere Aufmerksamkeit galt den ethischen Problemen und Schwierigkeiten mit der Einwilligung nach Aufklärung, die durch Missverständnisse bzgl. der Therapie entstehen können (130). Versuche werden unternommen, um zwischen begründeten medizinischen Innovationen und unbegründeten Behandlungen mit Stammzellen zu unterscheiden (144, 145 ). Nichtsdestotrotz hat die potenzielle Möglichkeit der Heilung eine ungemeine Anziehungskraft, insbesondere in Kombination mit anekdotenhaften Berichten über bemerkenswerte Veränderungen bei Patienten. Aus diesen Gründen werden Betroffene wahrscheinlich weiterhin so lange für vielversprechende Therapien bezahlen (146 ), bis es tatsächlich durchschlagende wissenschaftlich validierte Behandlungen für akute und chronische QSLgibt.
130
Kapitel 5
Stärkung von Gesundheitssystemen
dabei zu unterstützen, eine fundierte Entscheidung über ihre Gesundheitsversorgung zu treffen. Im Bereich der unterstützenden Technologie gibt es derzeit wenig empirische Evidenz über die Auswirkungen der Ergebnisse für Menschen mit QSL (147, 148). Ohne Ergebnisforschung in den Bereichen der unterstützenden Technologie für Menschen mit QSL ist es schwierig zu bestimmen, welche Hilfsmittel funktionieren, wie gut sie funktionieren und für welche Zielgruppe sie funktionieren.
■
■
Schlussfolgerung und Empfehlungen Dieses Kapitel lieferte eine breite Übersicht über die Möglichkeiten, wie Gesundheitssysteme gestärkt werden können, um zu gewährleisten, dass Querschnittgelähmte Zugang zu den benötigten Gesundheitsdiensten erhalten (Rehabilitation und technische Hilfsmittel eingeschlossen). Auf Basis der in diesem Kapitel dargelegten Evidenz, sollen die nun folgenden Empfehlungen in Betracht gezogen werden. Ein Reihe von Interessenvertretern müssen ihre Aufgaben wahrnehmen und sollten konsultiert werden, wenn es darum geht, diese Empfehlungen umzusetzen.
An politischen Diskussionen mit den wichtigsten Beteiligten mitwirken, um von der Evidenz der Forschung sowie von Wissen, Erfahrungen und Ansichten von betroffenen Personen zu profitieren, die in zukünftige politische Entscheidungen involviert oder von ihnen betroffen sind. Multilaterale und bilaterale Geber sollten eine angemessene finanzielle und technische Unterstützung für Entwicklungsländer zur Verfügung stellen, mittels einer nachhaltigen und transparenten Kooperation auf internationalen Ebene.
Bereitstellung von Diensten ■ Für Querschnittgelähmte existierende und relevante Dienste erfassen, Zugangsbarrieren identifizieren und die Kapazität dieser Dienste ausbauen, doppelten Aufwand oder die Einrichtung von parallelen Diensten vermeiden. Sicherstellen, dass angemessene Dienstleistungssysteme für Menschen mit QSL zur Verfügung stehen. Diese sollten den Zugang zu Spezialdiensten einschließen, falls die notwendigen Ressourcen vorhanden sind. In ressourcenärmeren Kontexten sollten Einrichtungen für QSL oder Stationen in allgemeinen Krankenhäusern aufgebaut werden. Unabhängig von den Gegebenheiten müssen Systeme eingeführt werden, um ein Behandlungskontinuum für Betroffene zu gewährleisten, wenn sie in ihr persönliches Umfeld zurückkehren. Effiziente Kommunikation und Überweisungssysteme etablieren, um zu gewährleisten, dass die Versorgung übergreifend über die drei Versorgungsphasen koordiniert werden kann: (i) medizinische Erst- und Akutversorgung; (ii) post-akute medizinische Versorgung und Rehabilitation und (iii) Gesundheitserhaltung. Menschen mit QSL und deren Familienangehörige als Partner in die Erbringung 131
■
Führungsrolle und Steuerung ■ ■ Eine umfassende Situationsanalyse durchführen, um eine Basis für die nachhaltige Planung auf nationaler Ebene zu schaffen. Nationale politische Konzepte und Pläne entsprechend der Situationsanalyse entwickeln sowie eine bestmögliche Forschungsevidenz und bewährte Praktiken entwickeln oder überarbeiten. Partnerschaften mit anderen relevanten Sektoren entwickeln (z. B. Bildung, Arbeit, Personentransport, soziale Sektoren), um die Wahrscheinlichkeit von verbesserten Gesundheitsergebnissen von Querschnittgelähmten zu erhöhen.
■
■
■
Querschnittlähmung – Internationale Perspektiven
von Diensten einbinden, d. h. sie mit Informationen versorgen und in die Entscheidungsfindung, Planung, Zielsetzung sowie Beobachtung und Bewertung einbinden.
■
Personal ■ Zugang zu Facharztausbildungen fördern, um eine angemessene Anzahl an entsprechend ausgebildeten Ärzten der physikalischen Medizin und der Rehabilitationsmedizin sicherzustellen; Beschäftigungstherapeuten, Physiotherapeuten; Prothesentechniker und Orthopäden, Logopäden und Sprachtherapeuten, Rehabilitationstechniker und Rollstuhltechniker. Bestehende Ausbildungslehrpläne erweitern, um QSL und unterstützende Technologie adäquat abzudecken. Möglichkeiten zur beruflichen Weiterbildung sowohl von Rehabilitationsfachkräften als auch allgemeinen Gesundheitsfachkräften fördern. Personen, die keine Fachkräfte sind, wie z. B. andere Betroffene, so einbinden, dass sie bei der Erbringung einer umfassenden Bandbreite von Gesundheitsversorgungsund Rehabilitationsdiensten unterstützend mitwirken. Sicherstellen, dass für Familienangehörige und auch die Betroffenen selbst Schulungsmöglichkeiten und Unterstützung vorhanden sind.
Auswahlmöglichkeit hat und weitere Veränderungen der Lebenssituation berücksichtigt werden, wie beispielsweise Altern Örtlichen Herstellern von unterstützender Technologie in Ländern mit einem niedrigen Nationaleinkommen die Möglichkeit geben, zu den landesweiten Standards in der Gesundheitstechnologie beizutragen, gemeinsam mit internationalen Branchenkreisen.
Gesundheitsinformationen ■ Sicherstellen, dass angemessene und standardisierte Gesundheitsinformationssysteme zur Datenerhebung in allen Gesundheitsdiensten vorhanden sind. Daten über die Ursachen der Verletzung sammeln und auswerten, zusammen mit klinischen Daten und Daten über Management und Ergebnisse, um sie als Grundlage für Planung und Entscheidungsfindung für sowohl die Betroffenen als auch für Dienste zu nutzen.
■ ■
■
■
Finanzierung und Erschwinglichkeit ■ ■ Ausreichende Finanzmittel für Fachdienste für Querschnittgelähmte zur Verfügung stellen. Gewährleisten, dass angemessene Versicherungsverträge für sowohl den Zeitraum vor als auch nach der Verletzung bestehen, die die Betroffenen vor entstehenden Kosten schützen. Sicherstellen, dass Querschnittgelähmte Zugang zu einer umfassenden und erschwinglichen Krankenversicherung haben. Internationale Partnerschaften entwickeln, um technische und finanzielle Unterstützung zur langfristigen und nachhaltigen Bereitstellung von Diensten für Menschen mit QSL zu sichern.
■
Gesundheitstechnologien ■ ■ ■ Transparente und faire Leitlinien erstellen, um den Zugang von Querschnittgelähmten zu technischen Hilfsmitteln zu fördern. Kosteneffiziente Modelle zur Versorgung mit unterstützender Technologie identifizieren. Gewährleisten, dass Dienste der unterstützenden Technologie auf die Bedürfnisse des Betroffenen abgestimmt sind, dieser eine
■ ■
132
Kapitel 5
Stärkung von Gesundheitssystemen
Forschung ■ ■ Die Implementierung von konsequent evidenzbasierter Forschung unterstützen. Objektive Informationen über neue Entwicklungen in der Versorgung von QSL an relevante Beteiligte, Querschnittgelähmte und deren Familien weiterleiten. Gesundheitssystemforschung durchführen, um die Zugangsraten zu Gesundheitsver-
■
■
sorgungs- und Rehabilitationsdiensten zu bestimmen, und um die effizientesten und wirtschaftlichsten Modelle der Dienstleistungserbringung zu identifizieren. Sicherstellen, dass evidenzbasierte Richtlinien verfügbar sind und von Gesundheitsversorgungs- und Rehabilitationspersonal verwendet werden.
Quellen 1. 2. 3. 4. 5. 6. 7. 8. De Savigny D, Adam T. Systems thinking for health systems strengthening. Geneva, World Health Organization/Alliance for Health Policy and Systems Research, 2009. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf, accessed 12 April 2012). Iezzoni LI et al. Mobility impairments and use of screening and preventive services. American Journal of Public Health, 2000, 90:955-961. doi: http://dx.doi.org/10.2105/AJPH.90.6.955 PMID:10846515 Iezzoni LI, O’Day BL. More than ramps. A guide to improving health care quality and access for people with disabilities. New York, NY, Oxford University Press, 2006. Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 2001, 15:600-606. doi: http://dx.doi.org/10.1191/0269215501cr453oa PMID:11777090 Munce SEP et al. Physician utilization among adults with traumatic spinal cord injury in Ontario: a population-based study. Spinal Cord, 2009, 47:470-476. doi: http://dx.doi.org/10.1038/sc.2008.173 PMID:19153588 Dryden DM et al. Utilization of health services following spinal cord injury: a 6-year follow-up study. Spinal Cord, 2004, 42:513-525. doi: http://dx.doi.org/10.1038/sj.sc.3101629 PMID:15249928 Laursen B, Helweg-Larsen K. Health service use in adults 20–64 years with traumatic brain injury, spinal cord injury or pelvic fracture. A cohort study with 9-year follow-up. BMJ Open, 2012, 2:e001521. doi: http://dx.doi.org/10.1136/bmjopen-2012-001521 PMID:23103605 McColl MA et al. Primary care for people with SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3. Vancouver, SCIRE, 2010 (pp. 1−24) (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). van Loo MA et al. Care needs of persons with long-term spinal cord injury living at home in the Netherlands. Spinal Cord, 2010, 48:423-428. doi: http://dx.doi.org/10.1038/sc.2009.142 PMID:19884896 Eide AH et al. Living conditions among people with activity limitation in Zimbabwe: a representative regional survey. Oslo, SINTEF, 2003. Eide AH, van Rooy G, Loeb ME. Living conditions among people with activity limitations in Namibia: a representative national study. Oslo, SINTEF, 2003. Loeb ME, Eide AH, editors. Living conditions among people with activity limitations in Malawi: a national representative study. Oslo, SINTEF, 2004. Eide A, Loeb M. Living conditions among people with activity limitations in Zambia: a national representative study. Oslo, SINTEF, 2006. Eide AH, Kamaleri Y. Living conditions among people with disabilities in Mozambique: a national representative study. Oslo, SINTEF, 2009. Cott CA. Client-centred rehabilitation: client perspectives. Disability and Rehabilitation, 2004, 26:1411-1422. doi: http:// dx.doi.org/10.1080/09638280400000237 PMID:15764361 Whalley Hammell K. Experience of rehabiltiation following spinal cord injury. Spinal Cord, 2007, 45:260-274. PMID:17310257 WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disability and Rehabilitation, 2003, 25:487-490. doi: http://dx.doi.org/10.1080/0963828031000071723 PMID:12745944
9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19.
133
Querschnittlähmung – Internationale Perspektiven
20. Post MWM et al. Services for spinal cord injured: availability and satisfaction. Spinal Cord, 1997, 35:109-115. doi: http:// dx.doi.org/10.1038/sj.sc.3100362 PMID:9044519 21. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 22. South-North Centre for Dialogue and Development. Global survey of government actions on the implementation of the standard rules of the equalization of opportunities for persons with disabilities. Amman, Office of the United Nations Special Rapporteur on Disabilities, 2006:1−141. 23. Dejong G et al. The organization and financing of health services for persons with disabilities. The Milbank Quarterly, 2002, 80:261-301. doi: http://dx.doi.org/10.1111/1468-0009.t01-1-00004 PMID:12101873 24. China Disabled Persons’ Federation. Law on the Protection of Persons with Disabilities, 10 April 2008 (http://www.cdpf.org. cn/english/law/content/2008-04/10/content_84949.htm, accessed 20 May 2012). 25. Chen J et al. eds. Inter–province transfer of 10,373 patients injured in Wenchuan earthquake. Journal of Evidence-Based Medicine, 2009, 2:270-276. doi: http://dx.doi.org/10.1111/j.1756-5391.2009.01053.x PMID:21349026 26. Li Y et al. Evaluation of functional outcomes of physical rehabilitation and medical complications in spinal cord injury victims of the Sichuan earthquake. Journal of Rehabilitation Medicine, 2012, 44:534-540. doi: http://dx.doi. org/10.2340/16501977-1005 PMID:22674233 27. Hu X et al. Analysis of functional status, quality of life and community integration in earthquake survivors with spinal cord injury at hospital discharge and one-year follow-up in the community. Journal of Rehabilitation Medicine, 2012, 44:200-205. doi: http://dx.doi.org/10.2340/16501977-0944 PMID:22367060 28. WHO. Prehospital trauma care systems. Geneva, World Health Organization, 2005. 29. ESCIF. European Spinal Cord Injury Federation (ESCIF) web page. Nottwil, Switzerland, European Spinal Cord Injury Federation, 2012 (http://www.escif.org/, accessed 20 March 2012). 30. Aito S. Complications during the acute phase of traumatic spinal cord lesions. Spinal Cord, 2003, 41:629-635. doi: http:// dx.doi.org/10.1038/sj.sc.3101513 PMID:14569264 31. Bagnall AM et al. Spinal fixation surgery for acute traumatic spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (1):CD004725. PMID:18254059 32. Chappell P, Wirz S. Quality of life following spinal cord injury for 20–40 year old males living in Sri Lanka. Asia Pacific Disability Rehabilitation Journal, 2003, 14:162-178. 33. De Vivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and cause of death among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1411-1419. doi: http://dx.doi.org/10.1016/S00039993(99)90252-6 PMID:10569435 34. Burns AS, Ditunno JF. Establishing prognosis and maximising functional outcomes after spinal cord injury: a review of current and future directions in rehabilitation management. Spine, 2001, 26 Suppl:S137-S145. doi: http://dx.doi. org/10.1097/00007632-200112151-00023 PMID:11805621 35. Fromovich-Amit Y et al. Properties and outcomes of spinal rehabilitation units in four countries. Spinal Cord, 2009, 47:597603. doi: http://dx.doi.org/10.1038/sc.2008.178 PMID:19172151 36. Illis LS. The case for specialist units. Spinal Cord, 2004, 42:443-446. doi: http://dx.doi.org/10.1038/sj.sc.3101633 PMID:15197413 37. Kiekens C et al. Organisation and financing of musculoskeletal and neurological rehabilitation in Belgium: KCE reports 57S. Brussels, Belgian Health Care Knowledge Centre, 2007 (https://kce.fgov.be/sites/default/files/page_documents/ d20071023020.pdf, accessed 20 March 2012). 38. New PW. A multidisciplinary consultation team to address the unmet needs of hospitalized spinal cord injury patients. Archives of Neurology, 2010, 67:1074-1076. doi: http://dx.doi.org/10.1001/archneurol.2010.204 PMID:20837850 39. New PW. Non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? Australian Health Review, 2006, 30:353-361. doi: http://dx.doi.org/10.1071/AH060353 PMID:16879094 40. Priebe MM et al. Spinal cord injury medicine: economic and societal issues in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl 1:S84-S88. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.005 PMID:17321854 41. Scivoletto G, Morganti B, Molinari M. Early versus delayed inpatient spinal cord injury rehabilitation: an Italian study. Archives of Physical Medicine and Rehabilitation, 2005, 86:512-516. doi: http://dx.doi.org/10.1016/j.apmr.2004.05.021 PMID:15759237 42. Smith M. Efficacy of specialist versus non-specialist management of spinal cord injury within the UK. Spinal Cord, 2002, 40:10-16. doi: http://dx.doi.org/10.1038/sj.sc.3101226 PMID:11821964 43. New PW et al. International comparison of the organisation of rehabilitation services and systems of care for patients with spinal cord injury. Spinal Cord, 2012, 51:33-39. PMID:22801190
134
Kapitel 5
Stärkung von Gesundheitssystemen
44. van Langeveld SA et al. Comparing content of therapy for people with a spinal cord injury in postacute inpatient rehabilitation in Australia, Norway, and the Netherlands. Physical Therapy, 2011, 91:210-224. doi: http://dx.doi.org/10.2522/ ptj.20090417 PMID:21212372 45. Borg J, Lindström A, Larsson S. Assistive technologies in developing countries: national and international responsibilities to implement the Convention on the Rights of Persons with Disabilities. Lancet, 2009, 374:1863-1865. doi: http://dx.doi. org/10.1016/S0140-6736(09)61872-9 PMID:19944867 46. LaVela SL et al. Geographical proximity and health care utilization in veterans with SCI&D in the USA. Social Science & Medicine, 2004, 59:2387-2399. doi: http://dx.doi.org/10.1016/j.socscimed.2004.06.033 PMID:15450711 47. Middleton JW et al. Issues and challenges for development of a sustainable service model for people with spinal cord injury living in rural regions. Archives of Physical Medicine and Rehabilitation, 2008, 89:1941-1947. doi: http://dx.doi. org/10.1016/j.apmr.2008.04.011 PMID:18929022 48. Grabois EW et al. Accessibility of primary care physicians’ offices for people with disabilities: and analysis of compliance with the Americans with Disabilities Act. Archives of Family Medicine, 1999, 8:44-51. doi: http://dx.doi.org/10.1001/archfami.8.1.44 PMID:9932071 49. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/ oti.228 PMID:17624872 50. Pearlman J et al. Lower-limb prostheses and wheelchairs in low-income countries. IEEE Engineering in Medicine and Biology Magazine, 2008, 27:12-22. doi: http://dx.doi.org/10.1109/EMB.2007.907372 PMID:18463017 51. Pearlman J et al. Design, development and testing of a low-cost electric powered wheelchair for India. Disability and Rehabilitation. Assistive Technology, 2009, 4:42-57. doi: http://dx.doi.org/10.1080/17483100802338440 PMID:19172480 52. Goodwin JS et al. Epidemiology of Medicare abuse: the example of power wheelchairs. Journal of the American Geriatrics Society, 2007, 55:221-226. doi: http://dx.doi.org/10.1111/j.1532-5415.2007.01063.x PMID:17302658 53. Bergström AL, Samuelsson K. Evaluation of manual wheelchairs by individuals with spinal cord injuries. Disability and Rehabilitation. Assistive Technology, 2006, 1:175-182. doi: http://dx.doi.org/10.1080/17483100600573230 PMID:19260185 54. May LA et al. Wheelchair back-support options: functional outcomes for persons with recent spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1146-1150. doi: http://dx.doi.org/10.1016/j.apmr.2003.08.105 PMID:15241766 55. Kittel A, Di Marco A, Stewart H. Factors influencing the decision to abandon manual wheelchairs for three individuals with a spinal cord injury. Disability and Rehabilitation, 2002, 24:106-114. doi: http://dx.doi. org/10.1080/09638280110066785 PMID:11827144 56. Mukherjee G, Samanta A. Wheelchair charity: a useless benevolence in community-based rehabilitation. Disability and Rehabilitation, 2005, 27:591-596. doi: http://dx.doi.org/10.1080/09638280400018387 PMID:16019868 57. Oderud T et al. User satisfaction survey: an assessment study on wheelchairs in Tanzania. In: Sheldon S, Jacobs NA, eds. Report of a consensus conference on wheelchairs for developing countries, Bengaluru, India, 6–11 November 2006. Copenhagen, International Society for Prosthetics and Orthotics, 2007 (pp. 112–117). 58. New PW, Simmonds F, Stevermuer T. Comparison of patients managed in specialised spinal rehabilitation units with those managed in non-specialised rehabilitation units. Spinal Cord, 2011, 49:909-916. doi: http://dx.doi.org/10.1038/ sc.2011.29 PMID:21468042 59. Divanoglou A, Seiger A, Levi R. Acute management of traumatic spinal cord injury in a Greek and a Swedish region: a prospective, population-based study. Spinal Cord, 2010, 48:477-482. doi: http://dx.doi.org/10.1038/sc.2009.160 PMID:20029396 60. Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord, 2003, 41:303-309. doi: http:// dx.doi.org/10.1038/sj.sc.3101443 PMID:12714994 61. Soopramanien A et al. Using telemedicine to provide post-discharge support for patients with spinal cord injuries. Journal of Telemedicine and Telecare, 2005, 11 Suppl 1:68-70. doi: http://dx.doi.org/10.1258/1357633054461633 PMID:16036001 62. Dallolio L et al. Functional and clinical outcomes of telemedicine in patients with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:2332-2341. doi: http://dx.doi.org/10.1016/j.apmr.2008.06.012 PMID:19061746 63. Young-Hughes S, Simbarti L. Spinal cord injury/disorder teleconsultation outcome study. Rehabilitation Nursing, 2011, 36:153-158. doi: http://dx.doi.org/10.1002/j.2048-7940.2011.tb00083.x PMID:21721396 64. Burns RB et al. Using telerehabilitation to support assistive technology. Assistive Technology, 1998, 10:126-133. doi: http:// dx.doi.org/10.1080/10400435.1998.10131970 PMID:10339280 65. WHO. Increasing access to health workers in remote and rural areas through improved retention. Geneva, World Health Organization, 2010.
135
Querschnittlähmung – Internationale Perspektiven
66. Warf BC, Wright EJ, Kulkarni AV. Factors affecting survival of infants with myelomeningocele in southeastern Uganda. Journal of Neurosurgery Pediatrics, 2011, 7:127-133. doi: http://dx.doi.org/10.3171/2010.11.PEDS10428 PMID:21284456 67. WHO. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. 68. Brown-Triolo DL et al. Consumer perspectives on mobility: implications for neuroprosthesis design. Journal of Rehabilitation Research and Development, 2002, 39:659-669. PMID:17943668 69. New Zealand Spinal Trust. Resources and information. web site. Christchurch, New Zealand, New Zealand Spinal Trust, 2012 (http://www.nzspinaltrust.org.nz/library_resources_info.asp, accessed 12 April 2012). 70. Sherman JE, DeVinney DJ, Sperling KB. Social support and adjustment after spinal cord injury: influence of past peermentoring experiences and current live-in partner. Rehabilitation Psychology, 2004, 49:140-149. doi: http://dx.doi. org/10.1037/0090-5550.49.2.140 71. Ljungberg I et al. Using peer mentoring for people with spinal cord injury to enhance self efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 2011, 20:351-358. doi: http://dx.doi.org/10.1111/j.13652702.2010.03432.x PMID:21219518 72. Motivation UK. web site, Bristol, United Kingdom, Freedom through mobility, 2012 (http://www.motivation.org.uk, accessed 17 April 2012). 73. Horton R. A new epoch for health professionals’ education. Lancet, 2010, 376:1875-1877. doi: http://dx.doi.org/10.1016/ S0140-6736(10)62008-9 PMID:21112621 74. WHO. Everybody’s business: strengthening health systems to improve health outcomes. Geneva, World Health Organization, 2007. 75. Long TM et al. Training needs of pediatric occupational therapists in assistive technology. The American Journal of Occupational Therapy, 2007, 61:345-354. doi: http://dx.doi.org/10.5014/ajot.61.3.345 PMID:17569392 76. Gitlow L, Sanford T. Assistive technology education needs of allied health professionals in a rural state. Journal of Allied Health, 2003, 32:46-51. PMID:12665293 77. Bachman S et al. Provider perceptions of their capacity to offer accessible health care for people with disabilities. Journal of Disability Policy Studies, 2006, 17:130-136. doi: http://dx.doi.org/10.1177/10442073060170030101 78. Donnelly C et al. Utilization, access and satisfaction with primary care among people with spinal cord injuries: a comparison of three countries. Spinal Cord, 2007, 45:25-36. doi: http://dx.doi.org/10.1038/sj.sc.3101933 PMID:16733520 79. Neri MT, Kroll T. Understanding the consequences of access barriers to health care: experiences of adults with disabilities. Disability and Rehabilitation, 2003, 25:85-96. PMID:12554383 80. Scheer J et al. Access barriers for persons with disabilities: the consumer’s perspective. Journal of Disability Policy Studies, 2003, 13:221-230. doi: http://dx.doi.org/10.1177/104420730301300404 81. WHO. Framework for action on interprofessional education and collaborative practice. Geneva, World Health Organization, 2010. 82. eLearnSCI. Modules [web site], 2012 (http://www.elearnsci.org/, accessed 20 May 2012). 83. SCIPT. International Network of SCI Physiotherapists web site. International Network of SCI Physiotherapists, 2012 (http:// www.scipt.org/, accessed 12 April 2012). 84. ISCoS. International Spinal Cord Society web site, Aylesbury, United Kingdom, 2012 (http://www.iscos.org.uk/, accessed 20 March 2012). 85. Nwankwo OE, Katchy A. Outcome of a 12 week programme for management of the spinal cord injured with participation of patient’s relations at Hilltop Orthopaedic Hospital, Enugu, Nigeria. Spinal Cord, 2003, 41:129-133. doi: http://dx.doi. org/10.1038/sj.sc.3101410 PMID:12595877 86. Vitality. Vital change for spinal cord injury in Development Nations [web page]. London, United Kingdom, 2012 (http:// www.vitalchange.org.uk/vitality/, accessed 12 April 2012). 87. WHO. Essential health technologies [web page]. Geneva, Switzerland, WHO, 2012 (http://www.who.int/eht/en/, accessed 12 April 2012). 88. Pearlman J et al. Towards the development of an effective technology transfer model of wheelchairs to developing countries. Disability and Rehabilitation. Assistive Technology, 2006, 1:103-110. doi: http://dx.doi. org/10.1080/09638280500167563 PMID:19256173 89. Jefferds AN et al. Current state of mobility technology provision in less-resourced countries. Physical Medicine and Rehabilitation Clinics of North America, 2010, 21:221-242. doi: http://dx.doi.org/10.1016/j.pmr.2009.07.011 PMID:19951788 90. Copley J, Ziviani J. Barriers to the use of assistive technology for children with multiple disabilities. Occupational Therapy International, 2004, 11:229-243. doi: http://dx.doi.org/10.1002/oti.213 PMID:15771212 91. Phillips B, Zhao H. Predictors of assistive technology abandonment. Assistive Technology, 1993, 5:36-45. doi: http://dx.doi. org/10.1080/10400435.1993.10132205 PMID:10171664
136
Kapitel 5
Stärkung von Gesundheitssystemen
92. Scherer MJ. Outcomes of assistive technology use on quality of life. Disability and Rehabilitation, 1996, 18:439-448. doi: http://dx.doi.org/10.3109/09638289609165907 PMID:8877302 93. Hunt PC et al. Demographic and socioeconomic factors associated with disparity in wheelchair customizability among people with traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1859-1864. doi: http:// dx.doi.org/10.1016/j.apmr.2004.07.347 PMID:15520982 94. Glumac LK et al. Guatemalan caregivers’ perceptions of receiving and using wheelchairs donated for their children. Pediatric Physical Therapy, 2009, 21:167-175. doi: http://dx.doi.org/10.1097/PEP.0b013e3181a34a2b PMID:19440126 95. Mobility without Barriers Foundation web site, Burlington, USA, Mobility without Barriers, 2012 (http://www.worldmobility.org/, accessed 17 April 2012). 96. Cooper RA et al. Advances in electric-powered wheelchairs. Topics in Spinal Cord Injury Rehabilitation, 2006, 11:15-29. doi: http://dx.doi.org/10.1310/ACUK-KFYP-ABEQ-A30C 97. Enable NSW. Guidelines for the prescription of a seated wheelchair or mobility scooter for people with a traumatic brain injury or spinal cord injury. Sydney, Enable NSW and Lifetime Care and Support Authority, 2011 (http://www.lifetimecare.nsw.gov. au//Spinal_Cord_Injury.aspx, accessed 27 February 2011). 98. Lindstrom A. Appropriate technologies for assistive devices in low-income counties. In: Hsu JD, Michael JW, Fisk JR. AAOS atlas of orthoses and assistive devices. Philadelphia, PA, Mosby Elsevier, 2008. 99. Romanian Academic Society (SAR). Imobilizat sau integrat? Statul si accesul la echipamente de mobilitate si la servicii de viata independenta. Isolated or included? The state and access to mobility equipments and independent living services. November 2010, p.1 (http://www.motivation.ro/uploads/studii%20SAR/Policy%20brief%20Imobilizat%20sau%20integrat%209%20nov%202010.pdf accessed 29 May 2012) 100. MRF. Motivation Romania Foundation. Accessibility map. web site (http://www.accesibil.org, accessed 24 April 2013). 101. MRF. Motivation Romania Foundation, 2012 web site (http://www.motivation.ro/en, accessed 24 April 2013). 102. WHO. Wheelchair service training package. Geneva, World Health Organization, 2013 (http://www.who.int/disabilities/publications/technology/wheelchair/training/en, accessed 27 April 2013). 103. Assistive Technology Act. United States Congress 2004 (Public Law 108–364) (http://www.ataporg.org/summaryact.html, accessed 2 August 2011). 104. Beck R. Enable Ireland: action on disability. Dublin, Enable Ireland, 2008 (http://www.enableireland.ie, accessed 20 April 2013). 105. Cripps RA et al. A global map for traumatic spinal cord injury epidemiology: towards a living data repository for injury prevention. Spinal Cord, 2011, 49:493-501. doi: http://dx.doi.org/10.1038/sc.2010.146 PMID:21102572 106. Biering-Sørensen F et al. The International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi. org/10.1038/sj.sc.3101930 PMID:16955072 107. Cardenas DD et al. Etiology and incidence of re-hospitalization after traumatic spinal cord injury: a multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2004, 85:1757-1763. doi: http://dx.doi.org/10.1016/j.apmr.2004.03.016 PMID:15520970 108. De Vivo M et al. International spinal cord injury core data set. Spinal Cord, 2006, 44:535-540. doi: http://dx.doi.org/10.1038/ sj.sc.3101958 PMID:16955073 109. Kreuger H. Spinal cord injury: progress in care and outcomes in the last 25 years. Vancouver, The Rick Hansen Institute, 2011. 110. Stover SL et al. History, implementation and current status of the National Spinal Cord Injury Database. Archives of Physical Medicine and Rehabilitation, 1999, 80:1365-1371. doi: http://dx.doi.org/10.1016/S0003-9993(99)90246-0 PMID:10569429 111. Bates I et al. Indicators of sustainable capacity building for health research: analysis of four African case studies. Health Research Policy and Systems, 2011, 9:14. doi: http://dx.doi.org/10.1186/1478-4505-9-14 PMID:21443780 112. Tate DG, Boninger ML, Jackson AB. Future directions for spinal cord injury research: recent developments and model systems contributions. Archives of Physical Medicine and Rehabilitation, 2011, 92:509-515. doi: http://dx.doi.org/10.1016/j. apmr.2010.07.243 PMID:21353833 113. Whiteneck G, Gassaway J. SCIRehab: a model for rehabilitation research using comprehensive person, process and outcome data. Disability and Rehabilitation, 2010, 32:1035-1042. doi: http://dx.doi.org/10.3109/09638281003775584 PMID:20392171 114. Whiteneck GG et al. Inpatient and postdischarge rehabilitation services provided in the first year after spinal cord injury: findings from the SCIRehab study. Archives of Physical Medicine and Rehabilitation, 2011, 92:361-368. doi: http://dx.doi. org/10.1016/j.apmr.2010.07.241 PMID:21353820 115. Yazdizadeh B, Majdzadeh R, Salmasian H. Systematic review of methods for evaluating healthcare research economic impact. Health Research Policy and Systems, 2010, 8:6. doi: http://dx.doi.org/10.1186/1478-4505-8-6 PMID:20196839 116. Gertler P et al. Impact evaluation in practice. Washington, DC, The International Bank for Reconstruction and Development/ The World Bank, 2011.
137
Querschnittlähmung – Internationale Perspektiven
117. Whiteneck GG et al. Quantifying environmental factors: a measure of physical, attitudinal, service, productivity and policy barriers. Archives of Physical Medicine and Rehabilitation, 2004, 85:1324-1335. doi: http://dx.doi.org/10.1016/j. apmr.2003.09.027 PMID:15295760 118. Craig A et al. The efficacy and benefits of environmental control systems for the severely disabled. Medical Science Monitor, 2005, 11:RA32-RA39. PMID:15614204 119. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:1134-1137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 120. Field MJ, Jette AM. The future of disability in America. Washington, DC, The National Academies Press, 2007. 121. May-Teerink T. A survey of rehabilitative services and people coping with physical disabilities in Uganda, East Africa. International Journal of Rehabilitation Research, 1999, 22:311-316. doi: http://dx.doi.org/10.1097/00004356-19991200000008 PMID:10669981 122. Swiss Paraplegic Foundation (http://www.paraplegie.ch/en/pub/gv/become_a_member.cfm, accessed 24 April 2013). 123. ACC. Accident Compensation Corporation web site. Wellington, New Zealand, Accident Compensation Corporation, 2012 (http://www.acc.co.nz, accessed 17 April 2012). 124. NDIS. National Disability Insurance Scheme web site, Canberra, Australia, NDIS, 2012 (http://www.ndis.gov.au/, accessed 17 April 2012). 125. Dicianno BE et al. RESNA position on the application of tilt, recline, and elevating leg rests for wheelchairs. Assistive Technology, 2009, 21:13-22. doi: http://dx.doi.org/10.1080/10400430902945769 PMID:19719059 126. Crespo LM, Reinkensmeyer DJ. Effect of robotic guidance on motor learning of a timing task. Paper presented at BioRob 2008. Second IEEE, RAS & EMBS International Conference on Biomedical Robotics and Biomechatronics, 19−22 October 2008 (http://ieeexplore.ieee.org/xpl/mostRecentIssue.jsp?punumber=4753967, accessed 12 April 2012). 127. Atkins MS et al. Mobile arm supports: evidence-based benefits and criteria for use. The Journal of Spinal Cord Medicine, 2008, 31:388-393. PMID:18959356 128. Chin CA. Integrated electromyogram and eye-gaze tracking cursor control system for computer users with motor disabilities. Journal of Rehabilitation Research and Development, 2008, 45:161-174. doi: http://dx.doi.org/10.1682/ JRRD.2007.03.0050 PMID:18566935 129. Sesin A et al. Adaptive eye-gaze tracking using neural-network-based user profiles to assist people with motor disability. Journal of Rehabilitation Research and Development, 2008, 45:801-818. doi: http://dx.doi.org/10.1682/ JRRD.2007.05.0075 PMID:19009467 130. Amador MJ, Guest JD. An appraisal of ongoing experimental procedures in human spinal cord injury. Journal of Neurologic Physical Therapy; JNPT, 2005, 29:70-86. PMID:16386164 131. Fehlings MG, Baptiste D. Current status of clinical trials for acute spinal cord injury. Injury, 2005, 36 Suppl 2:B113-B122. doi: http://dx.doi.org/10.1016/j.injury.2005.06.022 PMID:15993112 132. Baptiste DC, Fehlings M. Update on the treatment of spinal cord injury. Progress in Brain Research, 2007, 161:217-233. doi: http://dx.doi.org/10.1016/S0079-6123(06)61015-7 PMID:17618980 133. Thuret S, Moon LD, Gage F. Therapeutic interventions after spinal cord injury. Nature Reviews. Neuroscience, 2006, 7:628643. doi: http://dx.doi.org/10.1038/nrn1955 PMID:16858391 134. Regenberg AC et al. Medicine on the fringe: stem cell-based interventions in advance of evidence. Stem Cells (Dayton, Ohio), 2009, 27:2312-2319. doi: http://dx.doi.org/10.1002/stem.132 PMID:19544406 135. Ryan KA et al. Tracking the rise of stem cell tourism. Regenerative Medicine, 2010, 5:27-33. doi: http://dx.doi.org/10.2217/ rme.09.70 PMID:20017692 136. Song P. Biotech pilgrims and the transnational quest for stem cell cures. Medical Anthropology, 2010, 29:384-402. doi: http://dx.doi.org/10.1080/01459740.2010.501317 PMID:21082484 137. Devereaux M, Loring JF. Growth of an industry: how U.S. scientists and clinicians have enabled stem cell tourism. The American Journal of Bioethics, 2010, 10:45-46. doi: http://dx.doi.org/10.1080/15265161003769005 PMID:20461650 138. Dobkin BH, Curt A, Guest J. Cellular transplants in China: observational study from the largest human experiment in chronic spinal cord injury. Neurorehabilitation and Neural Repair, 2006, 20:5-13. doi: http://dx.doi. org/10.1177/1545968305284675 PMID:16467274 139. Huang H et al. Influence factors for functional improvement after olfactory ensheathing cell transplantation for chronic spinal cord injury. [Chinese Journal of Reparative and Reconstructive Surgery] Zhongguo Xiu Fu Chong Jian Wai Ke Za Zhi, 2006, 20:434-438. PMID:16683451 140. Amariglio N et al. Donor-derived brain tumor following neural stem cell transplantation in an ataxia telangiectasia patient. PLoS Medicine, 2009, 6:e1000029. doi: http://dx.doi.org/10.1371/journal.pmed.1000029 PMID:19226183
138
Kapitel 5
Stärkung von Gesundheitssystemen
141. Huang H et al. Olfactory ensheathing cells transplantation for central nervous system diseases in 1,255 patients. [Chinese Journal of Reparative and Reconstructive Surgery]Zhongguo Xiu Fu Chong Jian Wai Ke Za Zhi, 2009, 23:14-20. PMID:19192871 142. Cyranoski D. Korean deaths spark inquiry. Nature, 2010, 468:485. doi: http://dx.doi.org/10.1038/468485a PMID:21107396 143. Dolan T. A three-pronged management strategy to stem cell tourism. The American Journal of Bioethics, 2010, 10:43-45. doi: http://dx.doi.org/10.1080/15265161003754056 PMID:20461649 144. Hyun I. Allowing innovative stem cell-based therapies outside of clinical trials: ethical and policy challenges. The Journal of Law, Medicine & Ethics, 2010, 38:277-285. doi: http://dx.doi.org/10.1111/j.1748-720X.2010.00488.x PMID:20579251 145. Lindvall O, Hyun I. Medical innovation versus stem cell tourism. Science, 2009, 324:1664-1665. doi: http://dx.doi. org/10.1126/science.1171749 PMID:19556497 146. Caplan A, Levine B. Hope, hype and help: ethically assessing the growing market in stem cell therapies. The American Journal of Bioethics, 2010, 10:24-25. doi: http://dx.doi.org/10.1080/15265161.2010.481980 PMID:20461638 147. Fuhrer MJ. Assistive technology outcomes research: challenges met and yet unmet. American Journal of Physical Medicine & Rehabilitation, 2001, 80:528-535. doi: http://dx.doi.org/10.1097/00002060-200107000-00013 PMID:11421522 148. Reid D, Lailberte-Rudman D, Hebert D. Impact of wheeled seated mobility devices on adult users’ and their caregivers’ occupational performance: a critical literature review. Canadian Journal of Occupational Therapy, Revue Canadienne d’Ergothérapie, 2002, 69:261-280. doi: http://dx.doi.org/10.1177/000841740206900503 PMID:12501452
139
Kapitel 6 Einstellungen, Beziehungen und Anpassung
„Rollstuhlfahrer lösen bei Menschen ohne Behinderung oft eine gewisse Neugier aus. Viele fragen sich, warum ein ganz „normal“ aussehender Mensch in einem Rollstuhl sitzt. Dann ergreifen sie die Gelegenheit ein Gespräch anzufangen, indem sie sagen: „Gute Besserung!“, gefolgt von der Frage: „Hatten Sie einen Unfall?“. Der Gaffer hört sich die Geschichte der Person im Rollstuhl an und ihm wird klar, dass diese Person wirklich nicht aufstehen kann, obwohl die körperliche Verfassung nicht darauf hindeutet – es tut ihm aufrichtig leid und dann dreht er sich um und geht. Während er geht ist er dankbar dafür, dass nicht er es ist, der dieses „Leid“ ertragen muss. Er läuft schneller und denkt: „Am meisten im Leben habe ich Angst davor, einmal behindert zu sein.“ Was für viele Außenstehende wie ein Albtraum erscheint ist ganz normaler Alltag im glücklichen aber nicht ganz so leichten Leben eines Rollstuhlfahrers.“ (Bulent, Türkei) „Ihre Einstellungen machen mich sehr unglücklich. Sie rühren von Mythen und ihrem Glauben her. Natürlich ist es Zufall, dass gerade ich querschnittgelähmt bin – aber auf Samoa gibt es nicht viele Menschen, die die Schule besucht haben – nur 8%. Jeder muss arbeiten, also sehen die Leute einen als „Zeitverschwendung“ an, denn man sitzt ja nur herum. Besonders wegen meines Alters: Ich sollte hart für meine Familie arbeiten, aber das tue ich nicht – also muss ich nutzlos sein. Mit der Pflege ist es schwierig auf Samoa. In erster Linie kümmert sich die Ehefrau um einen – aber man kann sich glücklich schätzen, wenn man auch noch eine Mutter hat. Ohne Frau oder Mutter muss man im Krankenhaus bleiben. Die Familie holt einen nicht nach Hause. Das Wissen und die Ausrüstung dazu fehlen. Ich habe Glück, dass meine Frau mich so sehr liebt.“ (Pene, Samoa) „Ich erlitt eine QSL (Th10) als ich noch sehr jung war. Der Rollstuhl gehört schon immer zu meinem Leben dazu. Ich bin in einer ländlichen Region der USA aufgewachsen – ich habe mich in meinem Körper wohl gefühlt und meine Selbstwahrnehmung war sehr positiv. Aber ich war mir nie sicher, ob ich einmal einen Partner finden würde und war oft entmutigt, weil ich nicht so viele Verabredungen hatte wie meine Freunde. Nun habe ich eine liebevolle, feste Beziehung – nächstes Jahr wollen wir heiraten. Rückblickend wird mir klar, dass die einzigen Grenzen, an die ich jemals gelangt bin, diejenigen sind, die ich mir selbst auferlegt habe, weil ich nicht genug Selbstvertrauen hatte in Bezug auf Verabredungen und Sexualität. Als querschnittgelähmte Frau musste ich sogar noch offener, direkter, aufrichtiger und selbstbewusster sein bei Männern, denn es gab viele Fragen in Bezug auf meine Lähmung, wie etwa: „Wie soll das gehen?“ oder „Kannst du Sex haben?“. Sobald diese Fragen einmal geklärt sind nehmen die Dinge einfach ihren Lauf – wie bei jeder anderen Beziehung auch!“ (Cheri, USA) „25 Stunden pro Woche stand mir ein persönlicher Assistent für verschiedene Aufgaben zur Verfügung. Ich habe ein paar professionelle Helfer (Pfleger und Pflegerinnen) mit denen ich gut auskomme und die ich bitten kann, mich zu begleiten, wenn eine Reise geplant ist. Ich bereite solche Ausflüge immer gut vor und plane genügend Zeit ein, damit alles auch entspannt verläuft und es auch für meine Helfer eine positive Erfahrung ist, mich zu begleiten. Ich bin äußerst zufrieden mit diesen ganz besonderen ‚persönlichen Assistenten‘.“ (Kjell, Norwegen)
6
Einstellungen, Beziehungen und Anpassung Die Einstellung und das Verhalten von Familienmitgliedern, Freunden, Leistungserbringern im Gesundheitsdienst, Nachbarn und Fremden tragen zu den Umweltfaktoren bei, die das Leben von Menschen mit Querschnittlähmung (QSL) sowohl erschweren als auch erleichtern können (1). Gleichzeitig können Menschen mit QSL auch die Einstellung und das Verhalten von Menschen in ihrem sozialen Umfeld beein ussen. Dies hängt davon ab, inwiefern sich die betro ene Person an ihre neue Situation anpassen kann, denn das wiederum beein usst den Glauben an sich selbst und die Selbstwahrnehmung (2). Für viele Menschen mit QSL sind Respekt und Akzeptanz seitens der Familie, Freunde, Nachbarn, Kollegen und Dienstleister (insbesondere diejenigen Reaktionen aus dem Umfeld, die Furcht und Angst abbauen) ein ussreiche, positive Faktoren, die die Anpassung an die QSL ermöglichen (3). Die Hilfe und Unterstützung von nicht behinderten Menschen, ebenso wie gegenseitige Unterstützung von anderen Menschen mit Behinderung, sind eine wichtige Hilfe für Menschen mit Behinderung. Artikel 3 (Allgemeine Grundsätze) der UN-Konvention über die Rechte von Menschen mit Behinderungen (BRK) betont die Bedeutung der Achtung der innewohnenden Würde, der individuellen Autonomie, der Unterschiedlichkeit und der Akzeptanz von Menschen mit Behinderung als Teil der menschlichen Vielfalt und der Menschheit (4). Insbesondere sind folgende Artikel der Konvention relevant in Bezug auf Einstellungen und soziale Beziehungen: ■ Artikel 8 Bewusstseinsbildung; ■ Artikel 19 Unabhängige Lebensführung und Einbeziehung in die Gemeinschaft; ■ Artikel 23 Achtung der Wohnung und der Familie; ■ Artikel 30 Teilhabe am kulturellen Leben sowie an Erholung, Freizeit und Sport. Andere Artikel, wie etwa Artikel 26 (Habilitation und Rehabilitation) heben die Bedeutung begünstigender Faktoren für die Förderung positiver Beziehungen hervor. Dieses Kapitel befasst sich mit den Einstellungen und Beziehungen, die das Leben von Menschen mit QSL beein ussen. Dabei geht es um die Einbeziehung 143
Querschnittlähmung – Internationale Perspektiven
in das weitere Umfeld und auch um die Einstellungen von medizinischen Fachkrä en. Weiterhin wird die Bereitstellung von Hilfe und Unterstützung untersucht – dies betri sowohl die formelle stationäre und ambulante P ege, als auch die informelle, unentgeltliche P ege durch Familie und Freunde und die nutzergesteuerte kostenp ichtige persönliche Unterstützung. Im Anschluss daran werden im Abschnitt zu familiären Beziehungen die Unterstützung von und Beziehungen zu Eltern, Ehepartnern und Kindern untersucht. Schließlich befasst sich das Kapitel noch damit, wie Betro ene sich an die QSL anpassen und ein positives Selbstwertgefühl au auen. In jedem Abschnitt folgen auf eine Problemstellung Beispiele in Bezug auf Maßnahmen und Evidenz zur Verbesserung der Situation.
Einstellungen Einstellungen des weiteren Umfelds Kulturelle Vorstellungen und Einstellungen zu Behinderung beein ussen jegliche soziale Interaktion im Leben von Menschen mit Behinderung (5). Starren, Ignorieren, Meiden, Vorurteile und Ausgrenzung sind Ausdruck negativer Einstellungen (6–8). Einstellungsbezogene Barrieren können ebenso hinderlich sein wie physische Barrieren (9). Viele nicht behinderte Menschen wissen nichts über das Leben von Menschen mit Behinderung. Stattdessen basiert ihre Einstellung auf Klischees und negativen Vorstellungen (10, 11). Für gewöhnlich wird Behinderung mit Abhängigkeit und Passivität assoziiert –in manchen Kulturen gar mit Hexerei, Sünde oder schlechtem Karma (12). Selbst wenn nicht behinderte Menschen diese Vorurteile vermeiden, gilt Behinderung immer noch als unvereinbar mit einer guten Lebensqualität. Beispielsweise ist die allgemeine Bevölkerung o der Meinung, Tetraplegie sei schlimmer als der Tod (13, 14). Eine kenianische Studie über Familien mit Kindern mit Spina bi da hat gezeigt, dass nur sechs der 144
40 Familien die Gemeinscha als sehr hilfreich empfanden; sieben wurden gemieden und neun waren der Meinung ver ucht zu sein wegen der Geburt des behinderten Kindes (15). In Bangladesch hatten sogar die Familienmitglieder selbst negative Einstellungen und geringe Erwartungen in Bezug auf einen Verwandten mit Behinderung (16). Die Einstellungen anderer können sich auch positiv auswirken. Eine US-amerikanische Studie hat untersucht, was für Menschen mit Beeinträchtigungen der Mobilität ein Hindernis oder eine Erleichterung darstellt. Dabei hat sich herausgestellt, dass die Einstellungen von Familie, Freunden und persönlichen Assistenten einen enorm positiven Ein uss auf die Genesung hatten, während die Einstellungen von Ärzten und erapeuten als Hindernisse bei der Gesundheitsversorgung angesehen wurden (17). Dies kann jedoch je nach Schwere der Verletzung unterschiedlich sein: Eine kanadische Studie hat gezeigt, dass etwa Zweidrittel der Menschen mit QSL, die bei bester Gesundheit waren, die Einstellungen von Familie und Freunden als Erleichterung in Bezug auf die soziale Teilhabe empfunden haben. 25% der Menschen, die in schlechter gesundheitlicher Verfassung waren, empfanden die Einstellungen von Familie und Freunden als Barriere in Bezug auf die soziale Teilhabe (18). Manchen Menschen ist möglicherweise nicht bewusst, was eine positive Einstellung gegenüber Menschen mit QSL ist (19). Sie gehen vielleicht davon aus, dass querschnittgelähmte Menschen gesondert behandelt werden wollen und verhalten sich entsprechend. Alternativ bringen sie Unabhängigkeit vielleicht nur mit den Aufgaben in Verbindung, die ein Mensch mit QSL ausführen kann und weniger mit der Unabhängigkeit infolge eines selbstbestimmten Lebens. Studien zu Menschen mit QSL haben gezeigt, dass die Betro enen ihr Leben häu g positiver wahrnehmen, als Fachkrä e der Gesundheitsversorgung und die allgemeine Bevölkerung (19–21).
Kapitel 6
Einstellungen, Beziehungen und Anpassung
Der Umgang mit behinderten Menschen hil Vorurteile abzubauen (22). Je mehr querschnittgelähmte Menschen Regelschulen besuchen, ö entliche Verkehrsmittel benutzen, in Nachbarscha mit nicht behinderten Menschen leben und gemeinsam mit nicht behinderten Personen arbeiten, desto eher lernen Kinder und Erwachsene ohne Behinderung sie zu verstehen und als Teil einer facettenreichen Gesellscha wahrzunehmen (23). Eine verbesserte Zugänglichkeit von privaten Wohnräumen, Bars, Restaurants und Orten des kulturellen Geschehens ermöglicht es Menschen mit Behinderungen am gesellscha lichen Leben teilzuhaben und in die Freizeitgestaltung miteinbezogen zu werden. Dies wiederum führt tendenziell zu einer positiveren Einstellung gegenüber Menschen mit Behinderung. Zielgerichtete Maßnahmen, wie z.B. Schulungen für Dienstleister zur Bewusstseinsbildung und Gleichbehandlung von Menschen mit Behinderungen, können negative Haltungen abbauen und Verständnis fördern (24, 25). Maßnahmen an Schulen, wie z. B. Begegnungen mit Behinderten in Vorbildfunktionen oder deren Vertretern, können zur Bewusstseinsbildung und zum besseren Verständnis bei Kindern beitragen (26–28). Die Gegenwart von vielfältigeren und positiveren Vorbildern im Bereich Behinderung in den Medien beein usst die Einstellungen der Menschen gegenüber behinderten Menschen auch positiv (29). Ebenso können individuelle Bemühungen zur Bewusstseinsbildung von der Berichterstattung durch die Medien im Rahmen von großen Geschehnissen pro tieren, wie das Beispiel aus Haiti in Kasten 6.1 zeigt. Maßnahmen seitens der Regierungen zur Bewusstseinsbildung hinsichtlich der BRK werden dazu beitragen, negative Einstellungen gegenüber Menschen mit Behinderung abzubauen und gleichzeitig Akzeptanz fördern.
Barrieren abbauen
Einstellungen von Fachleuten der Gesundheitsberufe Fachleute der Gesundheitsberufe können manchmal Vorurteile gegenüber Menschen mit
Behinderung haben oder sie nicht mit dem nötigen Respekt behandeln (34). Eine Studie hat beispielsweise gezeigt, dass 8,2% der Hausärzte im Südwesten Frankreichs Unbehagen emp nden im Umgang mit Menschen mit körperlichen Beeinträchtigungen. Diese Einstellungen wurden zurückgeführt auf wenig Erfahrung, eine mangelha e medizinische Ausbildung im Bereich Behinderung und nicht ausreichende Zeit für die Konsultation (35). Eine australische Studie hat ergeben, dass die Einstellungen von Ergotherapie-Studenten keineswegs besser waren, als die von BWL-Studenten (23). Eine weitere Studie hat gezeigt, dass P egepersonal, das in der Akutversorgung von Menschen mit QSL tätig ist, eine negativere Einstellung gegenüber älteren Menschen mit QSL hat als ihre Kollegen, die in der Rehabilitation von querschnittgelähmten Menschen tätig sind oder mit Menschen mit QSL im allgemeinen (36). Dies könnte darauf zurückzuführen sein, dass sie ständig mit Menschen zu tun haben, deren Gesundheitszustand kritisch ist und die in hohem Maße abhängig sind. Dieses Phänomen könnte auch eine Erklärung sein für die negativen Einstellungen, die man bei Notfall- und Rettungsteams (37) und einigen Mitarbeitern im Bereich der Rehabilitation (19) festgestellt hat. Diese Studien wurden hauptsächlich in Ländern mit hohem Nationaleinkommen durchgeführt. Über die Einstellungen von medizinischem Fachpersonal in Ländern mit mittlerem und geringem Nationaleinkommen ist weniger bekannt (38), obwohl die Analyse der Weltgesundheitserhebung ergeben hat, dass Menschen mit Behinderung, doppelt so häu g auf Gesundheitsversorgungsdienste und Hilfsmittel stoßen, die unangemessen sind, wie Menschen ohne Behinderung. Ebenso wird ihnen dreimal so häu g der Zugang zur Versorgung verwehrt und sie werden vier Mal häu ger schlecht behandelt (39).
Barrieren abbauen
Fachleute der Gesundheitsberufe mit förderlichen Einstellungen haben Menschen mit QSL 145
Querschnittlähmung – Internationale Perspektiven
Kasten 6.1.
Veränderung der Einstellung auf Haiti
Während die notwendige medizinische Erstversorgung der Menschen mit QSL nach dem Erdbeben am 10. Januar 2010 eine Mammutaufgabe war, bestand die größte Herausforderung im Bereich Rehabilitation auf Haiti in der Wiedereingliederung. In einem Land, in dem Menschen mit Behinderung oft als cocobai (haitianisch-kreolisch für „nutzlos“) bezeichnet werden, war es eine enorme Herausforderung für QSL-Zentren, die Einstellung der Menschen zu ändern und erfolgreiche Programme zur Wiedereingliederung zu entwickeln. Eine ICF-Studie (Internationale Klassifikation der Funktionsfähigkeit, Behinderung und Gesundheit), die nach dem Erdbeben von Haiti Hospital Appeal (HHA) durchgeführt wurde, ergab, dass nahezu alle Patienten große Schwierigkeiten bei der Fortbewegung mittels technischer Hilfsmittel und Beförderungsmittel hatten. Die Umwelt hat einen erheblichen Einfluss auf diese Einschränkungen, da das Gebiet um das Krankenhaus herum sowie die bestehenden öffentlichen Verkehrsmittel für Rollstuhlfahrer nicht zugänglich waren (30). Neben der Anpassung der Infrastruktur, die im Zentrum der meisten Empfehlungen stand, liegt die wahrscheinlich größte Herausforderung für Länder wie Haiti im Abbau des kulturellen Stigmas, das Behinderung anhaftet. Von den 62 befragten haitianischen Familien gaben 45 an aufgrund der Behinderung ihres Kindes mit Beschimpfungen und Diskriminierung konfrontiert zu werden – 39 davon sogar täglich (31). Kulturelle und religiöse Ansichten tragen zu Diskriminierung bei, denn in Haiti wird Behinderung häufig als ein Phänomen übernatürlichen Ursprungs angesehen. Kinder mir Behinderung werden selbst für Missernten verantwortlich gemacht (32). Während nationale, infrastrukturelle Anpassungen in der Regel für NGOs zu kostenintensiv sind, ist kostengünstige Lobbyarbeit mit dem Ziel schnellerer und kurzfristiger Veränderungen durchaus möglich. HHA hat eine Kampagne ins Leben gerufen, die den Sport zur Förderung der Eingliederung von Menschen mit Behinderung nutzt. Die allgemeine Beliebtheit sowie die positiven Auswirkungen auf die körperliche, gesellschaftliche und wirtschaftliche Entwicklung machen Sport zum idealen Werkzeug für die Eingliederung und das Wohlbefinden von Menschen mit Behinderung (33). HHA konzentriert sich dabei sowohl auf den Breitensport, als auch auf professionellen Behindertensport. Leon G. verlor beim Erdbeben 2012 seine Frau und acht seiner Kinder und ist seitdem selbst querschnittgelähmt. Seine feste Entschlossenheit den Sport zu nutzen, um sein Leben mit der Behinderung zu meistern, hat große Aufmerksamkeit hervorgerufen und vielen Menschen in Cap-Haitien (der zweitgrößten Stadt Haitis) Hoffnung, Mut und Zuversicht gegeben. Laut Istvann Papp (Leiter des North Haiti United Nations Community Violence Reduction Teams) hat er auf diese Weise auch dazu beigetragen, die soziale Stigmatisierung von Behinderung zu beseitigen. Leon trägt nicht nur zur Bewusstseinsbildung bei Menschen ohne Behinderung bei, indem er sein Handbike nutzt, um sich in seinem Viertel fortzubewegen, sondern er hat auch als erster Handbiker Haitis sein Land bei den Parapan Games 2011 vertreten und so dazu beigetragen, die Stigmatisierung von Behinderung zu bekämpfen. Leon war oft im nationalen und internationalen Fernsehen zu sehen, hat bei öffentlichen Veranstaltungen gesprochen und hat Bemühungen unterstützt, 2012 zum ersten Mal die Paralympics im haitianischen Fernsehen zu übertragen. Seine Geschichte hat gezeigt, wie Sport sprachliche, kulturelle und gesellschaftliche Barrieren überwinden kann und dabei eine hervorragende Plattform bildet, für Eingliederungs- und Anpassungsstrategien, auf eine Art und Weise, wie es nur schwierig zu erreichen wäre mit traditionellen Formen der Wiedereingliederung (33). Während infrastrukturelle Anpassungen zweifellos dringend notwendig sind, muss ein Land zunächst Menschen mit Behinderung schätzen, verstehen und Rücksicht auf ihre Bedürfnisse nehmen – erst dann können angemessene Maßnahmen ergriffen werden. Wenn Menschen mit Behinderung als gleichberechtigt angesehen werden, wird es für sie leichter, ihre Menschenrechte zu verwirklichen. Leons Geschichte ist nur ein Beispiel dafür, wie die sportlichen Erfolge einer Person dazu beitragen können, Beziehungen und Einstellungen maßgeblich zu verbessern.
zufolge einen maßgeblichen Ein uss auf Genesung, Wohlbe nden, Selbständigkeit und Zuversicht (40). Man hat beispielsweise herausgefunden, dass Ärzte mit einer positiven Einstellung mehr 146
Ein uss auf die Einstellung des Patienten gegenüber der Behinderung und der Rehabilitation haben, als die Au lärung der Patienten über ihre Behandlungsmöglichkeiten (41). Es ist daher
Kapitel 6
Einstellungen, Beziehungen und Anpassung
wichtig, das Gesundheitsfachpersonal darin zu unterstützen, eine positive Einstellung und ein besseres Verständnis zu entwickeln. Bemühungen zur Verbesserung der Einstellungen bei Fachleuten der Gesundheitsberufe beinhalten Maßnahmen, wie etwa Vorlesungen und Module zum ema Gesundheitsbedürfnisse und Menschenrechte von behinderten Menschen im Grundstudium. Dazu gehört auch der Kontakt zu Menschen mit Behinderungen oder zu Gruppen, die sich für Behinderte engagieren (23, 42). Workshops und partizipative Aktivitäten können größeren und langfristigeren Ein uss haben als Vorlesungen (25). Schulungen am Arbeitsplatz und andere Formen der Fortbildung können dabei helfen, die Denkweise von Ärzten, P egepersonal und anderen Fachkrä en nach Abschluss der Ausbildung zu beein ussen (43). Die Förderung der Ausbildung und Einstellung von Gesundheitsfachkrä en mit Behinderung kann auch dazu beitragen, das bestehende Klischee aus dem Weg zu scha en, dass Menschen mit Behinderung immer Patienten sind (44).
Bedürfnissen, wie beispielsweise Tetraplegiker, mehr Hilfe als Paraplegiker. Wie der Weltbericht Behinderung (39) gezeigt hat, wird der Großteil des Bedarfs an Hilfe und Unterstützung von Menschen mit Behinderung von Familienmitgliedern und Freunden abgedeckt. Diese bezeichnet man als informelle P egende, die nicht bezahlt werden. In Ländern mit hohem Nationaleinkommen ist auch eine Unterstützung gegen Bezahlung möglich – dies gilt auch für Menschen mit hohem Einkommen in Ländern mit geringem Nationaleinkommen. Diese Unterstützung kann vom Staat, von ehrenamtlichen Organisationen oder auf gewerblicher Basis angeboten werden. Diese neue und gegebenenfalls sehr befähigende Form der Unterstützung wird im Folgenden im Abschnitt „Persönliche Assistenz“ genauer erörtert.
Informelle Pflege Studien über informelle P egende (in der Regel durch Familienmitglieder) haben die Art der ausgeführten Aufgaben sowie die Auswirkungen auf die Gesundheit der Familie und die Beziehungen beleuchtet (45, 46). Die Mehrheit der Erwachsenen mit QSL sind Männer – für gewöhnlich werden sie von Frauen gep egt. Eine brasilianische Studie hat beispielsweise gezeigt, dass über 80% der P egenden von Menschen mit traumatischer Paraplegie weiblich sind – für gewöhnlich handelt es sich dabei um Ehefrauen oder manchmal auch Schwestern; in mehr als der Häl e der Fälle erfolgte die P ege ausschließlich durch diese Frauen (47). Eine weitere bedeutende Gruppe im Bereich der informellen P egenden sind die Eltern von Kindern oder jungen Erwachsenen mit Spina bi da oder erworbener QSL: Auch hier sind es in der Regel die Frauen, die den Großteil der P egeaufgaben ausführen. Familie und Freunde haben möglicherweise das Gefühl, nicht ausreichend ausgebildet oder geeignet zu sein, um die nötige Hilfe zu leisten. Andere Forschungsergebnisse deuten auf Probleme wie etwa Isolation oder mangelnde 147
Hilfe und Unterstützung Das ema Hilfe und Unterstützung bezieht sich auf Personal ohne medizinischen Hintergrund, das Menschen mit Behinderung bei Aktivitäten des täglichen Lebens hil . Dies kann Zuhause nötig sein, in der Schule, bei der Arbeit, bei der Fahrt von A nach B oder im Rahmen von gesellscha lichen und gemeinscha lichen Aktivitäten. Umweltbedingte Barrieren verstärken in der Regel den Bedarf an Hilfe; eine verbesserte Zugänglichkeit und mehr technische Hilfsmittel verringern ihn für gewöhnlich. Menschen, die keine Hilfe erhalten – besonders diejenigen, die in einer unzugänglichen Umwelt leben– sind möglicherweise an ihr Zuhause gefesselt, oder sogar an ein bestimmtes Zimmer. Im Allgemeinen benötigen Menschen mit komplexen
Querschnittlähmung – Internationale Perspektiven
Unterstützung der p egenden Personen hin (48). Je nach P egebedarf kann die Unterstützung einer querschnittgelähmten Person körperlich und emotional anstrengend sein. Dies kann psychologische Auswirkungen haben, die die P ege beein ussen. Beispielsweise können Ehefrauen, die ihren querschnittgelähmten Partner p egen mehr Anzeichen von Stress und Depressionen zeigen als der Betro ene selbst (46). Eine niederländische Studie, die den Barthel-Index verwendete, hat ergeben, dass die empfundene Belastung durch die Unterstützung des querschnittgelähmten Partners mit fast 24,8% bei Partnern von Menschen mit schweren Behinderungen hoch war. Bei Partnern von Menschen mit leichten Behinderungen lag dieser Wert nur bei 3,9%. Daraus schloss man, dass die Prävention von Burnout bei P egenden Teil der P ege von Menschen mit QSL sein sollte (49). Eine brasilianische Studie hat ergeben, dass Personen, die einen Menschen mit Paraplegie p egen, nur einen geringen Wert erzielten beim SF-36 zur Messung der gesundheitsbezogenen Lebensqualität – dies gilt besonders für die Bereiche körperliche Schmerzen und Vitalität (47). Eine Studie auf den Fidschiinseln zu Personen, die Menschen mit QSL p egen, ergab eine beachtliche (psychische) Belastung für die P egenden (50). Auf den Fidschiinseln gibt es quasi keinerlei bezahlte P ege. Die Familie im weiteren Sinne ist die Hauptquelle der Unterstützung für Menschen mit QSL. Eine kleine Studie zur Lebensqualität von Familien mit Spina bi da-Kindern in Kenia hat gezeigt, dass dies eine tiefgreifende soziale, nanzielle, emotionale und seelische Belastung für die Eltern darstellt, die noch verstärkt wird, wenn die Kinder zudem an Harninkontinenz leiden (15).
Barrieren abbauen
Soziale Unterstützung ist ein entscheidender Faktor im Leben von erwachsenen Menschen mit QSL bei der Rückkehr ins eigene Zuhause und in das persönliche Umfeld nach Beendigung der Erstrehabilitation. Es sind Strategien und Programme nötig, um ein Netzwerk informeller 148
und persönlicher Hilfe für Menschen mit QSL zur Verfügung zu stellen, bevor diese die Rehabilitationseinrichtungen verlassen, so dass ein Leben in ihrem persönlichen Umfeld möglich wird (51). Während der stationären P ege sollten nicht nur die Patienten sondern auch ihre Familien in den Lernprozess einbezogen werden (52): Eine kanadische Studie betonte dabei insbesondere die Bedeutung des Bedarfs an Informationen zu medizinischen, psychosozialen und emotionalen Angelegenheiten, ebenso wie die Rolle von persönlichem Umfeld/Integration, Beschä igung/ nanzieller Situation und sogenannter ADL (Aktivitäten des täglichen Lebens)/ Selbstversorgung. Die Anpassung an die QSL in den ersten drei Jahren nach Eintreten der Verletzung wird verbessert durch die Bereitstellung von sozialer Unterstützung und Informationen für alle Familienmitglieder – nicht nur für die querschnittgelähmte Person selbst (53). Eine randomisierte, kontrollierte Untersuchung in den USA hat gezeigt, dass psychosoziale Maßnahmen, die sich sowohl an die p egende Person als auch an die querschnittgelähmte Person richteten, am e ektivsten waren in Bezug auf die Verringerung gesundheitlicher Probleme und sozialer Ausgrenzung der P egekra (54). Maßnahmen zur Unterstützung der Familie können persönliche Trainingseinheiten zum Erlernen von Problembewältigungsstrategien, Hilfe per Telefon oder Videokonferenz und Informationsmaterialen beinhalten. Wie sich gezeigt hat, funktionieren diese Maßnahmen und tragen zur Problemlösung bei – in einigen Fällen können dadurch auch Depressionen bei der p egenden Person reduziert werden (55, 56). Umfassende Unterstützungsleistungen während der Rehabilitation für Familien von Kindern mit traumatischer Verletzung haben sich als wirksam erwiesen. Dies betri die Koordinierung der Betreuung zum Zeitpunkt der Entlassung, Au lärungsprotokolle, die Einrichtung von Supportgruppen und Selbsthilfegruppen für Familien (57). Sowohl im Bereich der Behandlungsmethoden als auch im Bereich
Kapitel 6
Einstellungen, Beziehungen und Anpassung
der Forschung besteht Nachholbedarf wenn es um Familien mit Spina bi da-Kindern geht (58). Kurzzeitp ege ist eine beliebte Lösung in Ländern mit hohem Nationaleinkommen, wenn Familienmitglieder, die Kinder oder ältere Erwachsene mit Behinderung p egen, eine Auszeit von den täglichen P egeaufgaben benötigen, um die psychische Belastung zu reduzieren (59). In Ländern mit geringerem Nationaleinkommen können Programme im Bereich der gemeindenahen Rehabilitation (CBR) eine wichtige Quelle der Unterstützung für Familien mit behinderten Kindern sein (60, 61). Auch ehrenamtliche Organisationen können helfen. Eltern in Bangladesch gaben an, dass es ihnen geholfen hat, in Rehabilitationszentren andere betroffene Eltern zu tre en (16). Eine kenianische Studie zu Familien mit Spina bi da-Kindern ergab, dass Dreiviertel der Familien Unterstützung von einem Mitglied der Kirchengemeinde erhielten. Die Häl e der Familien gab an, auch andere Familien mit behinderten Kindern zu kennen. Dies lässt darauf schließen, dass gegenseitige Hilfe und Unterstützung verfügbar sind (15). Dennoch sind Projekte zur Unterstützung durch NGOs und im Bereich der gemeindenahen Rehabilitation noch nicht in allen Teilen der Welt vorhanden.
P egeheime sind die traditionelle Form der formellen P ege in Ländern mit hohem Nationaleinkommen – durch sie wird Menschen mit Behinderung die Chance auf ein freies, selbstbestimmtes, normales Leben verwehrt. Informelle Hilfe und Unterstützung hat sich als e ektiver bewährt, wenn sie mit verschiedenen formellen P egesystemen und –leistungen kombiniert wird. Kurzzeitp ege ermöglicht es Familien beispielsweise eine Auszeit vom Stress zu nehmen, der mit der informellen P ege von Kindern mit Spina bi da oder QSL verbunden ist (62). In Ländern mit hohem Nationaleinkommen gab es in den vergangenen Jahrzehnten eine Verschiebung von der P ege in P egeheimen (65, 66) hin zur P ege im persönlichen Umfeld. Betreuer innerhalb der Gemeinscha machen es möglich, dass querschnittgelähmte Menschen aller Altersgruppen im eigenen Zuhause leben können und nicht in ein P egeheim müssen – eine Lösung, die sich die meisten Menschen wünschen und die auch in Artikel 19 der BRK festgeschrieben ist. Gemeindeunterstützung bietet Hilfe bei der Selbstversorgung, Mobilität und Teilhabe und führt zu einer Verbesserung des Gesundheitszustandes und der Funktionsfähigkeit der Menschen mit QSL (67, 68). Häusliche Hilfe und Unterstützung sind wichtig für Menschen mit eingeschränkter oder mangelnder Mobilität. Mangelnde Mobilität führt zu vermehrten medizinischen Komplikationen und zeigt, wie wichtig es ist, dass Betreuer eine formelle Ausbildung hinsichtlich der unterstützenden Aufgaben in Bezug auf die Gesundheit erhalten (13, 69). Es hat sich gezeigt, dass formelle P ege im persönlichen Umfeld bei richtiger Umsetzung nicht nur kostengünstig ist (70, 71), sondern auch das Management einer neuropathischen Blase verbessern und das Risiko von Sekundärkomplikationen in Verbindung mit QSL reduzieren kann (67). Dies kann wiederum zu einer Verbesserung der Lebensqualität führen. Die Zusammenarbeit mit NGOs, wie dies beispielsweise in Südafrika 149
Barrieren abbauen
Formelle Pflege Formelle Unterstützungs- und Hilfsangebote gibt es in vielen verschiedenen Bereichen, dazu zählen unter anderem stationäre Unterstützungsdienste, Gemeindeunterstützung, Kurzzeitp ege und andere. Im Bereich der formellen P ege gibt es ö entliche Angebote, kostenp ichtige und kostenfreie private Angebote sowie eine Kombination aus diesen Angeboten (39). Formelle P ege kann sowohl die Menschen mit Behinderung als auch die informellen P egenden unterstützen (62 , 63). In Ländern mit niedrigem Nationaleinkommen gibt es jedoch womöglich keine Ressourcen für derartige Leistungen oder die Kosten für den Nutzer sind zu hoch (64).
Querschnittlähmung – Internationale Perspektiven
umgesetzt wurde, ist eine Möglichkeit, wie formelle P ege für Menschen in Ländern mit niedrigem oder mittlerem Nationaleinkommen zur Verfügung gestellt werden kann (72).
Persönliche Assistenz Für Menschen in Ländern mit hohem Nationaleinkommen, die keine Unterstützung seitens der Familie erhalten, oder die die Belastung für die informellen P egenden reduzieren möchten indem sie für P ege bezahlen, oder die mehr Kontrolle und Flexibilität bevorzugen, ist das Modell der persönlichen Assistenz eine gute Lösung. Persönliche Assistenz bezieht sich in diesem Zusammenhang auf menschliche Hilfe für Betro ene unter deren Anleitung, so dass diese Tätigkeiten des täglichen Lebens ausführen können, die nötig sind, um in ihrem persönlichen Umfeld leben zu können (z.B. Anziehen, Baden, Toilettengänge, Wäschewaschen, Haushaltsführung und Einkaufen) (73). Formelle Hilfe und Assistenz, die von P egediensten angeboten wird, kann unter Umständen mit strengen Regeln einhergehen in Bezug auf die Anzahl der Arbeitsstunden und die Tätigkeiten, die der P egende ausführen darf. Somit kann der Nutzer nur eingeschränkt über Leistungen verhandeln, die über die vom Anbieter explizit festgelegten Leistungen hinausgehen (74). Im Gegensatz dazu tragen nutzergesteuerte persönliche Assistenzprogramme dazu bei, das Wohlbe nden zu verbessern, Krankenhausaufenthalte zu minimieren und die allgemeine Zufriedenheit der Nutzer zu verbessern (51, 74 –76). Persönliche Assistenten ermöglichen es Menschen mit QSL, sich mehr einzubringen im gemeinscha lichen Leben (77), in der Schule und im ehrenamtlichen Bereich. Querschnittgelähmte Menschen können so aktiv einer Beschäftigung nachgehen und am gesellscha lichen Leben und an Freizeitaktivitäten teilhaben (51). Die Verfügbarkeit von persönlicher Assistenz kann auch Ein uss auf das Maß an Bewegung 150
einer Person haben. Im Rahmen einer Studie in den USA hat man festgestellt, dass weniger als die Häl e der Nutzer eines manuellen Rollstuhls die empfohlenen 150 Minuten leichter oder anstrengender körperlicher Ertüchtigung pro Woche einhalten (78). Kehn und Kroll (79) haben Sportler und Nicht-Sportler mit QSL bezüglich ihres Maßes an körperlicher Bewegung befragt. Dabei haben sie herausgefunden, dass ein persönlicher Assistent, der den Betroffenen bei der Nutzung der Trainingsgeräte und Trainingsausrüstung hil , der Hauptgrund für sportliche Betätigung war. Einer Ausweitung des persönlichen Assistenzmodells steht in erster Linie ein Mangel an nanziellen Mitteln im Wege (80). Hinzu kommen unzureichende Mechanismen zur Bewertung und der Ausbildungsbedarf, sowohl für die Nutzer von persönlichen Assistenten als auch für die persönlichen Assistenten selbst. Die Beschä igung oder Anleitung eines persönlichen Assistenten setzt voraus, dass die querschnittgelähmte Person über die nötigen Fähigkeiten verfügt, die Finanzen selbst zu verwalten und Arbeitgebertätigkeiten auszuführen – das ist nicht immer möglich und auch nicht von allen Betro enen gewünscht (81).
Barrieren abbauen
Mit Ausnahme von Menschen mit Zugang zu privaten Ressourcen hängt die Bereitstellung eines persönlichen Assistenten in der Regel vom Gesundheits- und Sozialversicherungssystem eines Landes ab. Eine systematische Prüfung der Evidenz ergab jedoch, dass das persönliche Assistenzmodell in Ländern mit hohem Nationaleinkommen kostengünstig sein kann – besonders verglichen mit den Kosten für institutionelle P ege von Menschen, die in hohem Maße abhängig sind (63). In Schweden gibt es beispielsweise ein Programm zur persönlichen Assistenz, das es Menschen mit schweren Beeinträchtigungen nanziell ermöglicht, einen persönlichen Assistenten –direkt oder über einen Anbieter– einzustellen. Auf diese Art und Weise
Kapitel 6
Einstellungen, Beziehungen und Anpassung
erhalten sie individuelle Unterstützung und können besser Ein uss nehmen auf die Organisation der Unterstützung (82). Die meisten querschnittgelähmten Menschen in Ländern mit niedrigem und mittlerem Nationaleinkommen können sich selbst keine persönliche Assistenz leisten und bekommen mit großer Wahrscheinlichkeit keine Hilfe vom Staat. Dennoch sind informelle Hilfe und Unterstützung möglich – und zwar so, dass sie die Menschenrechte Befähigung und Respekt wiederspiegeln und nicht etwa Abhängigkeit fördern (83, 84). Die Bereitstellung von persönlicher Assistenz sollte mit einer Bedarfsanalyse beginnen. Der ö entlich nanzierte National Serious Injury Service der Accident Compensation Corporation (ACC) in Neuseeland strebt beispielsweise danach, ein unabhängiges Leben und eine Rückkehr in die Beschä igung zu fördern, indem ein Fallmanager ernannt wird, der dabei hil , die Ansprüche des Betro enen in Bezug auf sein persönliches Umfeld zu koordinieren (85). Für gewöhnlich beurteilt ein von der ACC nanzierter unabhängiger Ergotherapeut, wie viele Assistenzstunden nötig sind. Auf Grundlage von Standard-Richtlinien stellt er die Funktionsfähigkeit des querschnittgelähmten Menschen fest und legt fest, welches Maß an Assistenz der Betro ene an einem normalen Tag benötigt. Unterstützung von Organisationen für Menschen mit Behinderungen und anderen Mittlerorganisationen kann wichtig sein, um Menschen mit Behinderung zu befähigen, selbst einen Assistenten einzustellen und anzuleiten und dabei die Rolle des Arbeitgebers einzunehmen (86). Nutzer bilden ihre Assistenten in der Regel lieber selbst aus oder bevorzugen es, wenn der gegenwärtige Assistent seinen Nachfolger ausbildet. Eventuell besteht ein spezieller Ausbildungsbedarf in Bereichen wie etwa der Verwendung eines Beatmungsgerätes, Heben und Tragen oder anderen gesundheitsbezogenen Bedürfnissen, wie etwa der Kontrolle von Haut, Blutdruck, Atemwegsoder Harnwegsinfektionen. Eine Ausbildung im Bereich persönliche Assistenz fördert Wissen auf
beiden Seiten - beim Nutzer und beim persönlichen Assistenten - (87) und kann dazu beitragen, das Risiko sekundärer Gesundheitsprobleme zu reduzieren, die zu einem Anstieg von Morbidität und Sterblichkeit führen und erhöhte Gesundheitskosten verursachen (88).
Familiäre Beziehungen Der Ein uss unterstützender Aufgaben ist ein Faktor, der persönliche Beziehungen erschweren kann. Vorausgehend wurden die Aufgaben zur Unterstützung von Kindern und Erwachsenen erläutert. Der emotionale Aspekt der Familie ist jedoch ebenso wichtig für Menschen mit QSL. Die Verfügbarkeit von sozialer Unterstützung – insbesondere von emotionaler Unterstützung und Unterstützung beim Lösen von Problemen – hat sich als wichtig für die Lebenszufriedenheit von querschnittgelähmten Menschen in der frühen Phase der Verletzung herausgestellt (89). Gefühle wie Würde, Stolz, Selbstvertrauen, Ho nung und Freude bei sozialen Interaktionen scha en ein starkes Fundament für ein erfolgreiches Leben für Menschen mit QSL (37, 90). Diese positiven Einstellungen stehen in Verbindung mit dem Umfang und der Art der Unterstützung durch Familie und Freunde. Diese können eine wichtige Rolle spielen in Bezug auf die Genesung und auch neue Rollen einnehmen – es besteht jedoch das Risiko der übertriebenen Hilfe (91), besonders bei querschnittgelähmten Kindern. Ebenso wurde nachgewiesen, dass soziale Unterstützung zwar wichtig ist, aber gleichzeitig machen es Freunde, die besorgt sind in Bezug auf Schmerz, Menschen mit QSL schwerer mit Schmerz umzugehen (92). Mehrere Studien haben gezeigt, dass die Anpassung an eine Behinderung oder schwerwiegende chronische Krankheit mit verbessertem seelischen Wohlbe nden einhergeht (93, 94). Zahlreiche Studien haben einen engen Zusammenhang zwischen Spiritualität und Lebensqualität bei Menschen mit QSL (95, 96)
151
Querschnittlähmung – Internationale Perspektiven
nachgewiesen – Religiöses Engagement kann zudem zu sozialer Unterstützung führen (97, 98). Menschen mit QSL sollten nicht einfach als passive Empfänger von Hilfe angesehen werden, sondern als aktive, selbständige Individuen, die bewusst ihre Beziehungen und ihr Umfeld mitgestalten, indem sie ihre psychologischen Fähigkeiten einsetzen, d.h. ihre soziale Kompetenz, Bewältigungsstrategien, Stärken und Ressourcen. Einer iranischen Studie zufolge erleichtern beispielsweise Selbstbewusstsein, Glaube, soziale Netzwerke und positives Denken die Bewältigung des Gesundheitsproblems (99). Menschen mit QSL können nicht nur Unterstützung erhalten, sondern diese auch leisten. Andere zu unterstützen kann förderlicher für querschnittgelähmte Menschen sein als unterstützt zu werden (68).
Partner QSL kann Beziehungen negative beein ussen und vielen Studien zufolge ist das Risiko einer Scheidung nach der Verletzung erhöht (100 – 105). Dies kann jedoch auch nur ein kurzzeitiger E ekt sein; eine Studie hat ergeben, dass über 80,7% der verheirateten Paare auch fünf Jahre nach Eintreten der Verletzung noch verheiratet waren – verglichen mit 88,8% der Allgemeinbevölkerung (106). Einer weiteren Studie zufolge ließ sich kein Unterschied in Bezug auf die Scheidungsraten von Menschen mit QSL und der Allgemeinbevölkerung feststellen (107). Ein Hinweis auf die Ursache dieser unterschiedlichen Ergebnisse ndet sich in einer Studie, die in Taiwan/China durchgeführt wurde – diese ergab, dass eine traumatische QSL entweder zu mehr Zusammenhalt oder zum Zerbrechen der Familie führen kann (108). Positiv könnte sich auf die Beziehung auswirken, dass man mehr Zeit zusammen verbringt (109). Dennoch sind die Ergebnisse dieser Studien schwer vergleichbar, da der Zeitrahmen für Trennungen und Scheidungen nach Eintreten der Verletzung variiert – ebenso wie die De nition des 152
Begri s Ehe (einige Studien bezogen auch Paare mit ein, die zusammen lebten, aber nicht verheiratet waren, andere taten dies nicht) (110). Die Interpretation der unterschiedlichen Ergebnisse wird zusätzlich erschwert durch kulturelle Unterschiede, Veränderungen im Familienleben oder in der Gesellscha im Allgemeinen und die unterschiedlichen methodologischen Vorgehensweisen. Sexualität ist ein weiterer wichtiger Aspekt einer partnerscha lichen Beziehung, der häu g durch QSL negativ beein usst wird. Studien im Vereinigten Königreich und den Niederlanden haben beispielsweise gezeigt, dass die sexuelle Befriedigung häu g als sehr gering eingestu wurde bei einer Befragung von querschnittgelähmten Menschen 12-18 Monate nach der Entlassung (111, 112). Studien zu Männern mit QSL in einer festen Beziehung haben ergeben, dass die sexuelle Befriedigung eher von der Befriedigung der Partnerin und der Qualität der Beziehung abhängt, als von biologischen Faktoren, wie etwa der Erektionsfähigkeit (113, 114), obwohl einige Menschen aus Angst vor Stuhloder Harninkontinenz vor sexuellen Aktivitäten zurückschrecken (115). Studien in Griechenland, Indien und China haben gezeigt, dass Stigmatisierung und andere negative Überzeugungen die Haupthindernisse für querschnittgelähmte Menschen in Bezug auf Sexualität und Ehe darstellen (116 –118). Verabredungen wurden als einer der schwierigsten Aspekte der Teenagerzeit eingestu von Erwachsenen, die bereits seit ihrer Kindheit querschnittgelähmt sind (119). Sexualität muss nicht immer ein Problem sein: Einer schwedischen Studie zufolge bewerteten 84% der Partner von querschnittgelähmten Menschen ihre Beziehung als befriedigend und 45% gaben an, dass ihr aktuelles Sexualleben genauso gut oder besser sei wie vor der Verletzung. Gefühle wie emotionale Nähe, Abwechslung bei den sexuellen Aktivitäten und gegenseitiges Interesse waren den Partnern wichtiger als physiologische Aspekte (120). Eine Studie unter 545 querschnittgelähmten skandinavischen Frauen
Kapitel 6
Einstellungen, Beziehungen und Anpassung
hat ergeben, dass 80% der Betro enen nach Eintreten der Verletzung sexuell aktiv waren. Die Häl e der Frauen mit QSL war in einer festen Beziehung und 85% bewerteten ihre Beziehung als sehr gut oder recht gut. Dennoch waren die Werte der querschnittgelähmten Frauen in den Bereichen Aktivität, Verlangen, Erregung und Befriedigung niedriger als in der Kontrollgruppe (121). Unterstützung bei intimen Beziehungen ist sehr wichtig zur Förderung des Wohlbe ndens von Menschen mit QSL. Eine enge Beziehung zu einem Partner wirkt sich positiv auf Lebensqualität (103) und Wohlbe nden (122) aus. Diverse Studien haben gezeigt, dass der Familienstand ein starker Prädiktor für die Ergebnisvariablen des unabhängigen Lebens ist (100, 107, 123, 124). Eine gute sexuelle Anpassung nach Eintreten der QSL wird positiv in Verbindung gebracht mit einer verbesserten Körperfunktion, einem höheren Einkommen, mehr Teilhabe bei der Arbeit und im persönlichen Umfeld und mehr Selbstvertrauen (125). Sämtliche Mitglieder des Rehabilitationsteams spielen eine Rolle und tragen Verantwortung in Bezug auf das Ansprechen von emen im Bereich der Sexualität bei Menschen mit QSL. Im Rahmen der eben erwähnten skandinavischen Studie hatten 61% der Frauen keinerlei Informationen zum ema Sexualität nach der QSL erhalten. Die Befragten gaben an, sich sowohl Informationen als auch Unterstützung zu wünschen – nicht zu früh nach Eintreten der Verletzung, aber sobald der Bedarf besteht (121). Junge Menschen mit Behinderung sollten ebenso Zugang zu angemessener sexueller Au lärung haben (126). Programme zur Verbesserung der sexologischen Kompetenz mit multidisziplinären Teams und individuellen Fachrichtungen während der Rehabilitation haben sich als wirksam erwiesen (127, 128). Menschen mit QSL schätzen besonders sexuelle Ratschläge von anderen querschnittgelähmten Menschen (129).
Barrieren abbauen
Am wichtigsten sind Maßnahmen zur sexuellen Gesundheit im Zeitraum zwischen der stationären Rehabilitation und einem halben Jahr nach der Entlassung (130). Eine Paartherapie hat sich als wirksames Mittel erwiesen, um Paare zu unterstützen, bei denen ein Partner querschnittgelähmt ist. Auf diese Weise können Gegenseitigkeit und Kommunikationsfähigkeiten verbessert werden. Ein ebenso hilfreicher Ansatz ist die Entwicklung neuer Aktivitäten, die beiden Seiten gleichermaßen Freude bereiten (131, 132). Frauen mit einem querschnittgelähmten Mann geben als Grund für ihre erfolgreiche Ehe an, dass Verantwortung gemeinsam getragen wird und sie nicht nur eine p egende Rolle einnehmen (124). Für diejenigen Menschen, deren Beziehung nach Eintreten der QSL zerbricht gibt es Ho nung auf neue Beziehungen. Menschen, die nach Eintreten der Verletzung heirateten, gaben an, zufriedener mit ihrer Lebensführung, ihrer Beziehung und ihrer Gesundheit zu sein und stu en auch ihr Sexualleben als besser ein (113, 133). Dies könnte darauf zurückzuführen sein, dass es sich hierbei einerseits um eine Untergruppe von Menschen mit QSL handelt, die aktiver, besser angepasst und zufriedener sind – und andererseits darauf, dass eine Ehe auch zur weiteren Verbesserung der Lebensqualität beiträgt (133).
Beziehungen zu Eltern und Geschwistern Eine QSL bei einem jungen Menschen kann ein traumatisches Ereignis für die ganze Familie sein. Die Überprüfung vorhandener Daten in diesem Bereich hat gezeigt, dass bei 12-13% der Familien mit Spina bi da-Kindern aus klinischer Sicht „Probleme im Familienverband“ bestehen (134). Diese Probleme verschlimmern sich, wenn es sich um sozial schwache Familien handelt. Eine nordamerikanische Studie hat ergeben, dass 25% der Pädiatriepatienten, 41% der Mütter und 35,6% der Väter unter einer 153
Querschnittlähmung – Internationale Perspektiven
posttraumatischen Belastungsstörung (PTBS) litten (135). Anderen Studien zufolge jedoch kann dies die Familie auch widerstandsfähiger machen – der Umgang mit Spina bi da kann sogar die Ehe der Eltern stärken (134). Daten weisen verstärkt darauf hin, dass der Ein uss auf die Geschwister eines Kindes mit Spina bi da sowohl positiver als auch negativer Natur sein kann. Beispielsweise zeigten die Kinder Angst und Sorge um die Gesundheit und das Wohlbe nden ihres behinderten Geschwisterkindes, gleichzeitig zeigten sie aber auch mehr Mitgefühl für den Bruder oder die Schwester mit Behinderung und wussten ihre eigenen körperlichen Fähigkeiten mehr zu schätzen (134). Es gibt Anzeichen für Angst und Depression bei Geschwistern von behinderten Kindern, aber dies ist vermeidbar (136) und hängt davon ab, wie gut die Familie mit der Situation umgeht (137). Das behinderte Kind sollte als Teil der Familie genauso behandelt werden, wie die anderen Kinder. Querschnittgelähmte Männer und Frauen können Kinder bekommen (138). Laut einer skandinavischen Studie wurden 18% der Frauen mit QSL nach Eintreten der Verletzung Mutter (121). Daten weisen keine signi kanten Unterschiede auf hinsichtlich der Mutterscha von Müttern mit QSL und nicht-behinderten Müttern – gleiches gilt für die Entwicklung der Kinder (139, 140). Die Forschungsergebnisse in Bezug auf Kinder querschnittgelähmter Väter zeigen ein ähnliches Bild (141). Allerdings müssen möglicherweise infolge der Behinderung die Rollen der Eltern neu de niert werden (142). Kinder können in der Regel gut mit der Behinderung eines Elternteils leben. Ein o enes Gespräch gilt als Schlüssel zur Akzeptanz (143). Manchmal wird jedoch von den Kindern erwartet, dass sie sich um Eltern oder Geschwister mit QSL kümmern, was möglicherweise nicht altersgerecht ist (144).
Barrieren abbauen
Gesundheitsdienste sollten versuchen herauszu nden, welche Familien mit querschnittge154
lähmten Kindern psychosoziale Unterstützung brauchen (134). Soziale Netzwerke sind sehr wichtig für Menschen mit Behinderung (145) und für die Familien von behinderten Kindern. Eine schwedische Studie über Menschen, die im Teenageralter eine QSL erlitten, hat gezeigt, dass Eltern und Gleichaltrige ein wichtiges Netzwerk bildeten. Eltern vertreten ihre Kinder bei der Interaktion mit Gesundheitsdiensten, sie unterstützen sie und helfen beim Umgang mit Sorgen, Frustration und Wut. Gleichaltrige sind wichtig für die Förderung von Aktivitäten und die Identitätsentwicklung. Gesundheitsdienste sollten das soziale Netzwerk des Patienten e ektiv nutzen (146). Au lärungsarbeit bei den Eltern kann Sichtweisen verändern und dabei helfen, realistische Ziele für ihre Kinder zu entwickeln (16). Eine kenianische Studie zur Lebensqualität von Menschen mit Spina bi da kam zu dem Schluss, dass die Familie, die p egende Person und das persönliche Umfeld über das Gesundheitsproblem informiert werden müssen, denn dies trägt zur körperlichen, seelischen und kommunikativen Entwicklung bei (147). Der Übergang zum Erwachsenenalter ist für viele Kinder mit Spina bi da ein großes Problem (134, 148) und war Gegenstand vieler bedeutender Studien in Nordamerika (149). Die Basis bildete dabei ein Modell des Lebensverlaufs, das die Entwicklungsphasen darstellt, ebenso wie die emen, die am meisten von Bedeutung sind in Bezug auf ein erfolgreiches Erwachsenenleben (150). Eltern müssen aufgeklärt werden, damit sie die Unabhängigkeit ihrer Kinder fördern, so dass diese Ausbildungsmöglichkeiten nach der Schule wahrnehmen, unabhängig leben und einer Beschä igung nachgehen können sofern möglich (148). Soziale Gruppen können dazu beitragen, Netzwerke im Freizeitbereich und Freundeskreise zu scha en. Junge Menschen mit Spina bi da sollten dazu ermutigt werden unabhängig zu sein (151), häusliche P ichten zu übernehmen, ö entliche Verkehrsmittel zu nutzen (sofern zugänglich und verfügbar) und an Gemeinscha saktivitäten teilzunehmen
Kapitel 6
Einstellungen, Beziehungen und Anpassung
(152). Um jungen Menschen mit QSL beim Übergang ins Erwachsenenalter zu helfen, ist auch die sexuelle Au lärung von großer Bedeutung (126). Sozialarbeiter und andere Personen, die die Familie unterstützen, sollten den Geschwistern von Spina bi da-Kindern dabei helfen, die komplexen Gefühle zu meistern, die verbunden sind mit einem Bruder oder einer Schwester, der/ die an dieser Krankheit leidet (153). Ebenso sollte man ihnen helfen, ihre eigenen Stärken und Ressourcen zu entwickeln, um diese Situation zu bewältigen. Rehabilitationszentren sollten die Bedürfnisse von Kindern berücksichtigen, die ein Elternteil besuchen, das erst vor kurzem eine QSL erlitten hat. Dabei ist es wichtig, einerseits angemessene Räumlichkeiten zur Verfügung zu stellen, und andererseits den Kindern das Verständnis und die emotionale Anpassung zu erleichtern (154).
Anpassung an die Querschnittlähmung Eine QSL kann eine Herausforderung für das Selbstwertgefühl einer Person sein (155). Ein gerade noch unabhängiger Mensch hat nun vielleicht keine Kontrolle mehr über sein eigenes Leben oder sogar seinen eigenen Körper und ist vielleicht von der Hilfe anderer abhängig. Eine traumatische QSL kann in manchen Fällen mit einer traumatischen Hirnverletzung einhergehen, die die Anpassung schwieriger macht (156). Es gibt viele Variablen, die mit der Lebensqualität nach einer QSL in Verbindung gebracht wurden. Neben der motorischen Beeinträchtigung tragen auch sekundäre Gesundheitsprobleme wie Inkontinenz, spastische Lähmungen und Schmerz zur Verringerung der Lebenszufriedenheit bei (111, 112, 122, 157, 158). Darüber hinaus kann es schwer sein, sich in nicht-angepassten Umgebungen mit einem Rollstuhl fortzubewegen - die Konfrontation mit Umweltbarrieren wird ebenfalls mit einer geringeren Lebenszufriedenheit assoziiert
(90). Die Anpassung an eine Behinderung ist ein dynamischer Prozess. Dabei lernen querschnittgelähmte Menschen sich besser in ihrem persönlichen Umfeld zurechtzu nden (159). Eine narrative Übersichtsarbeit von Studien zur Lebenszufriedenheit von Menschen mit QSL (160) bestätigt, dass querschnittgelähmte Menschen durchschnittlich mehr Sorgen haben und eine geringere Lebenszufriedenheit aufweisen, als die Allgemeinbevölkerung. Jedoch gibt es hier erhebliche Schwankungen und die meisten Querschnittgelähmten passen sich sehr gut an ihre Situation an. Einer niederländischen Studie zufolge wurde bei 75% der Teilnehmer eine Verringerung der Lebenszufriedenheit nach der QSL festgestellt. Aber schon ein Jahr nach der QSL gaben 50% der Teilnehmer an, zufrieden oder sehr zufrieden mit ihrem Leben zu sein (112). Eine Übersichtsarbeit der Evidenz der psychischen Gesundheit ergab, dass 20-30% der Menschen mit QSL klinisch signi kante Symptome einer Depression zeigten – dieser Wert ist wesentlich höher als der der allgemeinen Bevölkerung (160). Einige Ergebnisse deuten auch darauf hin, dass die Symptome einer Depression mit der Zeit abnehmen, obwohl dies zweifelha ist. Ebenso zeigen die meisten Studien, dass 7-27% der Menschen mit QSL an einer posttraumatischen Belastungsstörung leiden (160). Dennoch beweisen diese Ergebnisse – trotz des erhöhten Risikos in Bezug auf psychische Probleme – dass die Mehrheit der Menschen mit QSL sich gut an das Gesundheitsproblem anpasst. Langzeitstudien haben gezeigt, dass sich Menschen, die mit einer QSL altern, gut angepasst haben und auch ein hohes Maß an Lebensqualität aufweisen (158, 161). Eine große französische Studie zu Menschen mit Tetraplegie hat beispielsweise ergeben, dass fast Dreiviertel der Befragten ihr subjektives Wohlbe nden als recht gut oder besser bewerteten (122). Querschnittgelähmte Menschen, die die Anpassung erfolgreich meistern sind – wie andere Menschen mit einer erworbenen Behinderung – diejenigen, die sich auch mental erfolgreich an 155
Querschnittlähmung – Internationale Perspektiven
die neue Situation anpassen. Dazu kann auch gehören, unerreichbaren Zielen nicht so viel Wert beizumessen und die Erfolgskriterien zu verändern (155). Dieses Umdenken, ebenso wie die materiellen Möglichkeiten ermöglichen Menschen Lebenszufriedenheit (101). Die Beurteilungstheorie deutet darauf hin, dass die Art und Weise, wie Menschen zu sich selbst stehen, von ihrer kognitiven Reaktion auf eine Situation abhängt. Je nachdem wie Menschen eine Situation beurteilen und welches Verhalten sie bevorzugen, nutzen sie verschiedene Bewältigungsstrategien. Ein integrativer, konzeptueller Rahmen der Anpassung an gesundheitliche Probleme wurde beschrieben(162) mit besonderer Betonung persönlicher Ressourcen (z.B. Persönlichkeit, Intellekt), gesundheitsbezogener Faktoren, des sozialen und physischen Kontexts (z.B. Familie und Umwelt), und der kognitiven Beurteilung und Aufgaben der Anpassungsfähigkeit (z.B. Umgang mit den Symptomen, positives Selbstbild, Verhältnis zu anderen). Jede dieser Gruppen von Faktoren bietet einen potenziellen Ansatz zur Intervention. Ein kürzlich erstellter Bericht zu den psychologischen Faktoren in Verbindung mit psychischer Gesundheit und Lebenszufriedenheit infolge einer QSL, der auf 48 Studien basiert, hat gezeigt, dass es verschiedene Faktoren gibt, die immer wieder mit psychischer Gesundheit und Lebenszufriedenheit assoziiert werden. Zu diesen Faktoren zählen: Das Gefühl, Kontrolle über das eigene Leben zu haben, das Kohärenzgefühl, positive Faktoren wie Ho nung und Lebensinhalt, Selbstwertgefühle wie Selbstwirksamkeit und Selbstwertschätzung, positive und negative Emotionen und posttraumatische Wahrnehmungen (163). Während die Bewältigungsstrategie in Bezug auf die Akzeptanz der Behinderung die Anpassung stetig bestimmt, wird die Mehrheit der emotionsfokussierten Bewältigungsstrategien nicht mit Lebenszufriedenheit oder psychischer Gesundheit in Verbindung gebracht. Obgleich eine aktive, problemfokussierte 156
Bewältigungsstrategie allgemein als günstig betrachtet wird, so ist die wissenscha liche Fachliteratur sich hier nicht einig. Wenn Ziele nicht mehr erreichbar sind – wie im Falle einer QSL – kann es e ektiver sein, die persönlichen Präferenzen und Ziele an die neue Situation anzupassen. Dies kann sich auch positiver auf die Anpassung auswirken als der Versuch, aktiv die Lebensumstände an die eigenen Präferenzen anzupassen (164).
Barrieren abbauen Der Zugang zu Rehabilitationsleistungen sollte einhergehen mit dem Zugang zu angemessenen unterstützenden Technologien sowie der Fähigkeit, Darm- und Blasenmanagement selbst durchzuführen. Ebenso sollten Informationen und Unterstützung zur Verfügung gestellt werden – all dies sind wichtige Schritte im Bereich der Anpassung. Die Daten einer kleinen Studie in Sri Lanka belegen verbesserte gesundheitliche, psychologische und sozialen Ergebnisse bei querschnittgelähmten Männern, die eine Rehabilitation durchlaufen haben (165). Da die Art und Weise, wie Menschen sich selbst sehen entscheidend ist für die Anpassung an die körperliche Behinderung (166, 167), sollte während der Rehabilitation auch an der Wahrnehmung des eigenen Körpers der verletzten Person gearbeitet werden, um wieder ein positives Selbstwertgefühl herzustellen. Rehabilitationsfachleute können maßgeblich Ein uss nehmen auf das Selbstbild des Patienten, indem sie beispielsweise Informationen zur Verfügung stellen und Möglichkeiten scha en, wie etwa Gruppenaus üge. Diese haben sich als besonders förderlich erwiesen, wenn die Patienten Angst davor hatten, angestarrt zu werden (167). Evidenz zu psychologischen Interventionen nach einer QSL nimmt stetig zu, ist aber immer noch lückenha . Die am häu gsten untersuchte Intervention, um depressive Stimmungen bei Menschen mit QSL zu mindern, ist die kognitive Verhaltenstherapie. Sie beinhaltet eine Vielzahl
Rehabilitation
Kapitel 6
Einstellungen, Beziehungen und Anpassung
von Techniken zur Erleichterung der emotionalen Veränderung und der Verhaltensveränderung bei Menschen mit QSL (104, 168). Bei der kognitiven Verhaltenstherapie können unter anderem „irrationale“ oder negative Gedanken bekämp , Möglichkeiten zur Teilhabe an vergnüglichen Tätigkeiten gesteigert und Entspannungsstrategien gelehrt werden. Probleme in den Bereichen Durchsetzungsvermögen, soziale Kompetenz und Sexualität wurden ebenso einbezogen. Eine kognitive Verhaltenstherapie in der Gruppe kann auch eine kostengünstige Möglichkeit der gegenseitigen Unterstützung sein. Hier lassen sich ebenso soziale Kompetenzen üben und neue Gesichtspunkte erschließen (169, 170). Ein sogenanntes Coping e ectiveness training (CET) kann auch wirksam sein bei Menschen mit QSL (171, 172) – insbesondere bei denjenigen mit schwerwiegenderen psychischen Problemen zu Beginn. Bei der Intervention kann die negative Beurteilung der Auswirkungen einer QSL seitens der Teilnehmer verändert werden. Ebenso können die Betro enen davon überzeugt werden, dass sie die Folgen der QSL bewältigen können und so verbessert sich ihre Gemütslage. Bei der unterstützenden Gruppentherapie geht es darum, Erfahrungen und Informationen zu emen rund um die Verletzung auszutauschen. Zudem werden emotionale und kognitive Reaktionen untersucht, und die Betro enen erhalten Unterstützung und Au lärung von anderen Berto enen und Psychologen. Sie trägt ebenso dazu bei, Depressionen und Angst zu reduzieren (173). Es gibt eine Reihe positiver, psychologischer Faktoren, die stetig in Verbindung gebracht werden mit einer besseren Lebensqualität. Dazu zählen Selbstwirksamkeit (das Vertrauen in die Fähigkeit, eine Situation erfolgreich zu meistern) und Selbstwertschätzung (die eigene Einschätzung des Selbstwertes und des persönlichen Wertes einer Person). Diese Variablen können als psychologische Ressourcen angesehen werden, die Betro enen dabei helfen können, nach einer QSL wieder an Lebensqualität zu gewinnen.
Menschen mit hoher Selbstwirksamkeit und hoher Selbstwertschätzung nehmen ihre Zukun eher wieder selbst in die Hand als Menschen mit geringer Selbstwirksamkeit, da sie mehr Vertrauen haben in ihre Fähigkeit, die Situation zum Positiven hin zu beein ussen. Positive psychologische Interventionen, die darauf abzielen, positive Gefühle, Verhaltensweisen und Denkweisen zu entwickeln, haben sich bei anderen Bevölkerungsgruppen als wirksam erwiesen (174) und könnten auch bei querschnittgelähmten Menschen ausprobiert werden. Daten belegen die Wirksamkeit von multidisziplinären, multimodalen Interventionen, die auf eine Verbesserung der Selbstwirksamkeit abzielen (175). Es hat sich gezeigt, dass allgemeine und spezi sche Selbstwirksamkeiten – wie etwa in Bezug auf ein aktives Leben – durch Programme zur Förderung eines aktiven/unabhängigen Lebens (176, 177) oder Programme zur Förderung von körperlicher Aktivität und Sport gesteigert werden konnten (178–180). Das Wissen wurde durch multimodale Interventionsprogramme (181) verbessert und stand in engem Zusammenhang mit dem Gefühl, Kontrolle über das eigene Leben zu haben ein Jahr nach Eintreten der Verletzung. Während medizinische Fachkrä e häu g wissen, wie wichtig Ho nung ist, scheinen sie es als problematisch zu emp nden, die „unrealistischen“ Ho nungen der Patienten mit Ho nungen zu ersetzen, die sie als „realistischer“ ansehen (182). Jedoch kann in Bezug auf die Einstellung in der ersten Zeit nach Eintreten der QSL die „Ho nung auf Genesung“ eine e ektive Bewältigungsstrategie sein angesichts der sonst unerträglichen gesundheitlichen Krise (182, 183). Es kann daher von Vorteil sein, die Ho nungen einer Person aufrecht zu erhalten, solange die Ho nung auf Genesung von der QSL nicht der aktiven Teilnahme am Rehabilitationsprogramm im Wege steht. Durch eine Untersuchung hinsichtlich psychischer Probleme in einer frühen Phase der QSL lässt sich feststellen, welche Personen 157
Querschnittlähmung – Internationale Perspektiven
psychologische Hilfe benötigen. Eine Psychologische Behandlung von depressiven, querschnittgelähmten Menschen muss bei der ersten stationären Aufnahme als Teil der Funktionen des multidisziplinären Rehabilitationsteams verfügbar sein. Vieles weist darauf hin, dass psychologische Interventionen in dieser Phase hilfreich sind und so langfristigen Anpassungsproblemen vorgebeugt werden kann (160). Menschen mit QSL lernen in der Regel gerne in Gruppen, da sie so andere Menschen tre en können, die sich in ähnlichen Situationen be nden und sich nicht so alleine fühlen (184, 185). Dies ist beispielsweise möglich in Selbsthilfegruppen und im Rahmen von anderen Formen der gegenseitigen Unterstützung. Organisationen wie der Back-Up Trust im Vereinigten Königreich und der Spinal Injury Trust in Neuseeland bieten Seminare, Unterstützung und vertrauensbildende Aktivitäten, wie etwa Abseilen und Kajakfahren an (vgl. Kasten 6.2). Einer französischen Studie zufolge wirken sich die Teilhabe an Gemeinscha saktivitäten und häu ge Tre en mit Freunden positiv auf das Wohlbe nden von Menschen mit Tetraplegie aus (122), obgleich die Richtung der Kausalität nicht nachgewiesen ist. In Ländern mit niedrigem und mittlerem Nationaleinkommen können NGOs eine wichtige Rolle spielen bei der Unterstützung des Kapazitätenausbaus von sozialen Netzwerken, regionalen Netzwerk-Plattformen und Verbraucherorganisationen, wie etwa denjenigen, die von Livability Ireland in Süd- und Südostasien unterstützt werden (190). Im Vereinigten Königreich organisiert die NGO Motivation Peer-Group-Seminare und Trainerausbildungskurse in Malawi, Mosambik, Rumänien und anderen Ländern mit niedrigem und mittlerem Nationaleinkommen. Ziel ist es dabei, ein Netzwerk ausgebildeter Peer-Berater und Trainer aufzubauen, die Menschen die seit kurzem gelähmt sind dabei helfen können, sich an ihre neue Situation anzupassen (191). 158
Selbsthilfegruppen
Die soziale Bewegung der Menschen mit Behinderung hat vielen Menschen geholfen, freundscha liche Netzwerke aufzubauen oder sogar einen Partner zu nden (192, 193). QSL-Verbraucherorganisationen und Netzwerke spielen eine wichtige Rolle – nicht nur bei der Bereitstellung von wertvoller Beratung und Leistungen in Form von Interessenvertretung, Sport, Beschä igung und Unterstützung im Bereich der Unterkun (vgl. Kasten 6.3). Jedoch belegen die Daten einer französischen Studie über Menschen mit Tetraplegie, dass zwar 56% der befragten Menschen mit Behinderung angaben, dass behinderte Menschen eine Gemeinscha bildeten, jedoch nur ein Drittel von ihnen sich wirklich zugehörig fühlte (194). Insbesondere Frauen waren seltener Teil der Gemeinscha . Diejenigen, die sozial mehr ausgegrenzt waren und häu ger unter schlimmeren Symptomen litten, äußerten ein Zugehörigkeitsgefühl zu einem Netzwerk von Menschen mit Behinderung (194).
Körperliche Bewegung und Sport
Regelmäßige körperliche Betätigung kann erhebliche soziale Vorteile mit sich bringen, da so neue Freundscha en entstehen, Erfahrungen ausgetauscht werden können, Netzwerke der sozialen Unterstützung aufgebaut werden und die allgemeine Funktionsfähigkeit verbessert wird (195, 196). Durch die aktive Teilnahme an sportlichen Aktivitäten werden die Eingliederung in das persönliche Umfeld gefördert und die familiären Beziehungen verbessert – somit nimmt die betro ene Person wieder Kontakt zur Außenwelt auf (197–199). Eine Metaanalyse ergab eine geringe bis mittlere positive Verbindung zwischen körperlicher Aktivität und dem subjektiven Wohlbe nden (200). Eine Analyse der vorhandenen Literatur hat ergeben, dass die Teilnahme an Freizeitaktivitäten und sportlichen Aktivitäten sich sowohl auf die körperliche als auch auf die seelische Verfassung positiv auswirkt (201) und auch die soziale Interaktion steigert. Studien in den USA haben gezeigt, dass querschnittgelähmte sportlich aktive Menschen
Kapitel 6
Einstellungen, Beziehungen und Anpassung
Kasten 6.2.
Verbraucherorganisationen und Netzwerke für Querschnittlähmung
Verbraucher- und Interessenverbände von und für Menschen mit Behinderung können unschätzbar wertvolle Quellen für gegenseitige Unterstützung und Interessenvertretung sein. Verbraucherorganisationen und Netzwerke im Bereich QSL findet man in verschiedenen Teilen der Welt auf nationaler, regionaler und internationaler Ebene. Gemeinsam bemühen sie sich, sowohl politisch als auch praktisch die Lebensbedingungen zu verbessern und die Teilhabe von Menschen mit QSL zu steigern. Diese Gruppen können sich auf einzelne Themen konzentrieren, wie etwa sportliche Aktivitäten (oft mit dem Ziel Nachwuchsspitzensportler für internationale Wettbewerbe zu entdecken) oder auf spezifische Bevölkerungsgruppen (z.B. Veteranen, Kinder). Sie kümmern sich um die Bedürfnisse von querschnittgelähmten Menschen in allen wichtigen Lebensbereichen, von Bildung und Beschäftigung bis hin zu Anpassungen des Wohnraums und gegenseitiger Unterstützung. QSL-Organisationen können eigenständig oder Teil einer größeren Organisation oder eines Netzwerks sein. In vielen Ländern mit niedrigem und mittlerem Nationaleinkommen gibt es keine spezifischen QSL-Organisationen. Die Interessen von querschnittgelähmten Menschen werden dann von allgemeinen Behindertenorganisationen vertreten. Doch auch in einigen Ländern mit niedrigem Nationaleinkommen gibt es QSL-Organisationen, wie etwa in Nepal und Uganda. In manchen Ländern haben ehemalige Patienten kleine, lokale Initiativen gegründet als Ergebnis des persönlichen Bedarfs an Unterstützung und einer geeigneten Unterkunft. Diese Initiativen haben sich zusammengeschlossen und nationale Netzwerkorganisationen geschaffen, wie etwa Spinal Cord Injuries Australia (SCIA). Diese Organisation stellt Unterkünfte und Pflegedienste, Beschäftigung und soziale Beratungsdienste zur Verfügung. SCIA verfügt auch über eine Interessenvertretungsabteilung, die sich dafür einsetzt Integration zu fördern, und die spezifische Programme unterstützt. Ebenso setzt man sich hier für eine Veränderung des rechtlichen Rahmens ein, beispielsweise durch Anträge an Regierungsausschüsse (z.B. für eine bessere Versorgung der ländlichen Gebiete mit Gesundheitsdiensten und medizinischen Fachkräften) oder durch Beratung bei der Überprüfung politischer Konzepte (z.B. Überprüfung der Tabellen zur Bewertung von arbeitsbedingten Beeinträchtigungen für die Invalidenrente) (186 ). SCIA hat Menschen in der Vergangenheit auch rechtliche Unterstützung zur Verfügung gestellt, wie im Fall der Taxi-Diskriminierungsklage (187 ). Regionale Netzwerke können ein Weg sein, Erfahrungen und Erfolgsfaktoren bei der Umsetzung von Veränderungen auszutauschen. Ebenso können sie Initiativen unterstützen, die eine nationale Organisation aufbauen wollen. Die European Spinal Cord Injury Federation (ESCIF) wurde 2006 gegründet und vertritt 26 nationale QSL-Organisationen in ganz Europa. Zu ihren Aufgaben zählen der Informationsaustausch, die Veranstaltung jährlicher Konferenzen und eigene Forschungsarbeit zu Themen wie QSL-Register oder die Bereitstellung von spezieller QSL-Pflege und Rehabilitation (188). Um auf diesen erfolgreichen Erfahrungen auf nationaler und regionaler Ebene aufzubauen, gründeten ESCIF und das Asian Spinal Cord Network (ASCoN) Verbrauchernetzwerk 2012 das Global Spinal Cord Injury Consumer Network (189). Ziel war es, die bestehenden QSL-Verbrauchergruppen zusammen zu bringen, neue Gruppen in unterversorgten Ländern und Regionen zu gründen, und die Aktivitäten auszuweiten. Die Hauptaktivitäten und Pläne des Global SCI Consumer Network sind folgende:
■ ■ ■ ■ ■
Formalisierung gemeinschaftlicher Kanäle (z.B. Internetseite, Nachrichten-Updates); Verbindung von Organisationen und Schlüsselakteuren zur Unterstützung und Förderung lokaler Initiativen; Finanzielle und andere Unterstützung für die Aktivitäten des internationalen Netzwerks; Ernennung von QSL-„Botschaftern“ in der ganzen Welt; Organisieren eines Stabs von QSL-Freiwilligen zur Unterstützung von QSL-Gruppen in anderen Ländern/Regionen der Welt; ■ Organisieren von internationalen QSL-Verbrauchernetzwerkstreffen; ■ Langfristig: Formalisieren des Netzwerks als internationaler Verband oder internationale Organisation.
159
Querschnittlähmung – Internationale Perspektiven
Kasten 6.3.
Gegenseitige Unterstützung (Peer Support) in Sri Lanka
Die Spinal Injuries Association (SIA) in Sri Lanka wurde von Menschen mit QSL gegründet und hat neben Peer-Group-Seminaren viele nützliche Programme ins Leben gerufen. Einmal im Monat besuchen SIA-Mitglieder das allgemeine Krankenhaus, um Menschen zu treffen, die vor kurzem eine QSL erlitten haben. Sie dienen als Vorbild und helfen den erst kürzlich Verletzten den ersten Schock zu überwinden, indem sie ihnen Informationen zur Verfügung stellen und ihnen zeigen, dass das Leben auch mit QSL noch lebenswert ist. Einzelberichten zufolge hat diese Peer-Beratung vielen Menschen geholfen, die die Hoffnung bereits aufgegeben hatten und dachten, ihr Leben sei aufgrund der QSL vorbei. Wie der folgende Bericht schildert, scheint dieses Programm erfolgreich zu sein und kann als Modell für andere dienen, die Peer-Beratungsprogramme gerne übernehmen und aufbauen möchten. „Im September 1980 hatte ich einen Verkehrsunfall, bei dem ich mir eine Th4-QSL zuzog. Nach einer dreimonatigen Wundbehandlung in einem allgemeinen Krankenhaus wurde ich ins derzeit einzige verfügbare Krankenhaus mit Rehabilitationsangebot für Menschen mit QSL verlegt – ins Ragama Rehabilitation Hospital. Dort hat mir ein anderer Patient gezeigt, wie man einen behelfsmäßigen Kondomkatheter herstellt, den ich zu benutzen begann, nachdem ich alle Versuche mit dem Dauerkatheter aufgegeben hatte, den ich kürzlich erhalten hatte. Zur Darmentleerung setzte man sich auf den Toilettenstuhl und hoffte das Beste. Ich hatte kleine Wunden am Gesäß, die mich quälten. Mein Leben veränderte sich 1998. Motivation United Kingdom eröffnete eine Einrichtung in Sri Lanka, um den Krankenschwestern im Rehabilitationskrankenhaus beizubringen, wie man mit querschnittgelähmten Patienten umgeht, und um eine Rollstuhlwerkstatt einzurichten. Es wurde auch ein Ausbildungsprogramm für Peer-Group-Trainer durchgeführt, an dem ich teilnahm. Der fünftägige Kurs beinhaltete Unterrichtseinheiten zu folgenden Themen: Was bedeutet QSL? Vorbeugung von Druckstellen, die Bedeutung eines guten Rollstuhlkissens, Darmkontrolle, Blasenmanagement, Hautpflege, Sexualität, Rollstuhlnutzung, Rollstuhlwartung und andere Themen. Hier lernte ich digitale Stimulation und manuelle Darmentleerung, um die Stuhlentleerung zu meistern. Früher hatte ich viel Angst vor Reisen, aufgrund der Unsicherheit in Verbindung mit meinem Stuhlgang. Nach dem Kurs wechselte ich das Kissen in meinem Rollstuhl, um Druckstellen vorzubeugen. Die Tatsache, dass der Kurs von einer anderen querschnittgelähmten Person durchgeführt wurde, hatte einen großen Einfluss. Nach dem Kurs fielen mir alle Aktivitäten des täglichen Lebens so viel leichter. Ich fühlte mich wohl und war selbstsicher bei kurzen und langen Reisen. Später setzte die Spinal Injuries Association of Sri Lanka (SIA) das Peer-Group-Seminar fort und es war schön, die Fortschritte in Bezug auf die Lebensqualität der Menschen mit QSL zu sehen, die an einem solchen Kurs teilnahmen“ Cyril, Sri Lanka
höhere Werte in den Bereichen körperliche Unabhängigkeit, Mobilität, Beschä igung und soziale Integration zeigten, als Nicht-Sportler (197). Die psychologischen Vorteile waren besonders o ensichtlich bei denjenigen Betro enen, die eine Mannscha ssportart betrieben (202). Einer deutschen Studie zufolge gehen sportlich aktive Menschen eher einer beru ichen Beschä igung nach und weisen eine höhere Lebensqualität auf (203). Dabei werden sie nicht etwa von ihrem erapeuten, sondern von anderen Menschen motiviert, eine sportliche Aktivität zu beginnen (204). Spezielle Ausrüstung ermöglicht es Menschen mit QSL eine Vielzahl von Sportarten auszuüben (205 –207). Seit einigen Jahren sind auch 160
in Entwicklungsländern günstige Rollstühle für Basketball und Tennis verfügbar (208).
Schlussfolgerung und Empfehlungen Menschen mit Behinderung bewerten ihre Lebensqualität für gewöhnlich höher, als Menschen ohne Behinderung die Lebensqualität von Behinderten bewerten würden (20, 147). Gefühle wie Würde, Stolz, Selbstvertrauen, Ho nung und Freude an sozialen Interaktionen bilden für einen querschnittgelähmten Menschen ein solides Fundament für ein
Kapitel 6
Einstellungen, Beziehungen und Anpassung
erfolgreiches Leben (37, 90). Diese positiven Einstellungen stehen in Verbindung mit dem Ausmaß und der Art der Unterstützung von Familie und Freunden. Interventionen zur Bekämpfung negativer Einstellungen gegenüber Menschen mit QSL und anderen Behinderungen sollten eine Priorität sein, wie in Artikel 8 der BRK festgeschrieben. Besonders medizinische Fachkrä e und andere Dienstleister sollten ausgebildet werden, um sicherzustellen, dass sie Menschen mit QSL und anderen Behinderungen mit Würde und Respekt behandeln. Die Bereitstellung angemessener Leistungen, sowohl während der Rehabilitation als auch danach beim Leben in der Gemeinscha , kann die Anpassung erleichtern und die Lebensqualität von querschnittgelähmten Menschen verbessern. Angemessene Informationen und psychologische Unterstützung sind besonders wichtig. Der Bedarf an Hilfe wird in der Regel von Verwandten abgedeckt – die Bereitstellung von ambulanter P ege, Kurzzeitp ege und persönlicher Assistenz kann Betroffenen und ihren Angehörigen mehr Freiheiten einräumen. Die Teilnahme an sportlichen, kulturellen und geistlichen Aktivitäten kann das Selbstvertrauen steigern und das Wohlbe nden verbessern. Die folgenden Empfehlungen zeigen spezi sche Möglichkeiten für die weitere Entwicklung.
■
Unterstützung von Menschen beim Zugang zu sportlichen, religiösen, kulturellen und politischen Aktivitäten sowie Freizeitaktivitäten und Bildung und Beschäftigung.
Familienangehörige und Pflegende von Menschen mit Behinderung können unterstützt werden durch: ■ Beratungs- und Informationsangebote für Familienangehörige und Pflegende; ■ Die Ermöglichung von Treffen mit Menschen in ähnlichen Situationen, beispielsweise durch die Unterstützung der Gründung von Selbsthilfegruppen; ■ Eheberatung und andere Beratungsangebote und Interventionen, die sich an Paare richten, die von QSL betroffen sind. Dazu zählen auch Informationen zu intimen Themen; ■ Emotionale und soziale Unterstützung von Geschwistern von Kindern mit Spina bifida und QSL. Dies beinhaltet auch Angebote während der Übergangsphase zum Erwachsenenalter; ■ Kurzzeitpflege und sonstige Unterstützung für Familien von Kindern mit Spina bifida und QSL, sofern nötig und angemessen.
Hilfsdienste einrichten Sofern möglich, sollte die Entwicklung der persönlichen Assistenz-Angebote unterstützt werden durch: ■ Die Schaffung von Gemeinschaftspflegeabkommen und Bewertungsverfahren zur Unterstützung nutzerorientierter Pflegeprogramme; ■ Die Schaffung eines rechtlichen und finanziellen Rahmens, der direkte Zahlungen für persönliche Assistenz ermöglicht; ■ Die Befähigung von Menschen mit QSL und anderen Behinderungen, persönliche Assistenz zu nutzen, beispielsweise durch die Stärkung von Infrastrukturorganisationen, die Nutzer von persönlicher Assistenz unterstützen können. 161
Unterstützung anbieten Kinder und Erwachsene mit QSL sollten bei der Entwicklung eines positiven Selbstwertgefühls und bei der Anpassung unterstützt werden, beispielsweise durch: ■ Bereitstellung von Beratungs- und Informationsangeboten während der Rehabilitation und im weiteren persönlichen Umfeld. Dazu zählen auch Informationen zum Thema Sexualität; ■ Unterstützung beim Aufbau von Peer-Netzwerken und Selbsthilfeorganisationen;
Querschnittlähmung – Internationale Perspektiven
Einstellungen verändern Medizinische Fachkrä e und andere wichtige Dienstleister sowie die allgemeine Bevölkerung sollten dabei unterstützt werden, eine positive Einstellung gegenüber Behinderung zu entwickeln, indem man: ■ Sicherstellt, dass das Thema Menschenrechte von Behinderten bereits während der Grundausbildung auf dem Lehrplan von Lehrern, Ärzten und anderen medizinischen Fachkräften steht; ■ Angestellte mit Verantwortung im Bereich Kundenservice in den Bereichen Verkehr und soziale und häusliche Dienste besonders schult, hinsichtlich der Gleichbehandlung von Menschen mit Behinderung; ■ Die öffentliche Bewusstseinsbildung fördert durch die Unterstützung von Informationsund Aufklärungsinitiativen, die Kanäle wie Schulen und die Medien nutzen, um
negative Einstellungen gegenüber Behinderung zu bekämpfen.
Forschung unterstützen Die Evidenzbasis für Interventionen kann erweitert werden, indem man Forschung zu folgenden emen unterstützt: ■ Effektive Interventionen zur Bekämpfung negativer Einstellungen gegenüber Behinderung; ■ Kosteneffizienz und Kundenzufriedenheit im Bereich verbraucherorientierter Pflegeangebote; ■ Wirksamkeit psychologischer Interventionen zur Unterstützung der Anpassung an QSL; ■ Die Rolle von Interventionen wie etwa Sport, soziale Medien und Selbsthilfegruppen, um querschnittgelähmte Menschen bei der Entwicklung einer positiven Selbstwertschätzung und dem Aufbau von Beziehungen zu unterstützen.
Quellen 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. Chan F, Da Silva Cardoso E, Chronister, J.A. eds. Understanding psychosocial adjustment to chronic illness and disability: a handbook for evidence-based practitioners in rehabilitation. New York, NY, Springer Publishing 2009. Boswell BB, Dawson M, Heininger E. Quality of life defined by adults with spinal cord injuries. Journal of Rehabilitation, 1998, 64:27-32. Hampton NZ, Qin-Hilliard DB. Dimensions of quality of life for Chinese adults with spinal cord injury: a qualitative study. Disability and Rehabilitation, 2004, 26:203-212. doi: http://dx.doi.org/10.1080/09638280310001639704 PMID:15164954 United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). Stiker HJ. Corps Infirmes et Sociétés. Paris, Dunod, 1997. Weinberg N. Another perspective: attitudes of people with disabilities. In: Yuker HE, ed. Attitudes toward persons with disabilities. New York, NY, Springer, 1988 (pp. 141–153). Wright B. Attitudes and the fundamental negative bias: conditions and corrections. In: Yuker HE, ed. Attitudes toward persons with disabilities. New York, NY, Springer, 1988 (pp. 3–21). Garland-Thomson R. Staring: how we look. Oxford, Oxford University Press, 2009. Reeve D. Psycho-emotional disablism: the missing link? In: Watson N, Roulstone A, Thomas C, eds. Routledge handbook of disability studies. Routledge, London, 2012. Gallois C. Communicating disability: stereotypes, identity and motivation. In: Ng SH, Canddlin CN, Chiu CY, eds. Language matters: communication, identity and culture. Hong Kong, City University of Hong Kong Press, 2004. Reinhardt JD et al. Visual perception and appraisal of persons with impairments: a randomised controlled field experiment using photo elicitation. Disability and Rehabilitation, 2011, 33:441-452. Epub 2010 Jul 23 doi: http://dx.doi.org/10.3109/0963 8288.2010.500344 PMID:20653364 Ingstad B, Whyte SR, editors. Disability and culture. Berkeley, CA, University of California Press, 1995. Murray TA. Switching from hospital-based practice to home care. Home Care Provider, 1996, 1:79-82. doi: http://dx.doi. org/10.1016/S1084-628X(96)90233-6 PMID:9157912
12. 13.
162
Kapitel 6
Einstellungen, Beziehungen und Anpassung
14. Naami A, Havashi R. Perceptions about disability among Ghanaian university students. Journal of Social Work in Disability & Rehabilitation, 2012, 11:100-111. doi: http://dx.doi.org/10.1080/1536710X.2012.677616 PMID:22630599 15. van’t Veer T et al. Quality of life for families with spina bifida in Kenya. Tropical Doctor, 2008, 38:160-162. doi: http://dx.doi. org/10.1258/td.2007.070053 PMID:18628544 16. Maloni PK et al. Perceptions of disability among mothers of children with disability in Bangladesh: implications for rehabilitation service delivery. Disability and Rehabilitation, 2010, 32:845-854. doi: http://dx.doi. org/10.3109/09638280903326063 PMID:20131951 17. Gray DB et al. A subjective measure of environmental facilitators and barriers to participation for people with mobility limitations. Disability and Rehabilitation, 2008, 30:434-457. doi: http://dx.doi.org/10.1080/09638280701625377 PMID:17943511 18. Noreau L, Fougeyrollas P, Boschen KA. Perceived influence of the environment on social participation among individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2002, 7:56-72. doi: http://dx.doi.org/10.1310/1UGA-EY2T-N6XP-1PHE 19. Lys K, Pernice R. Perceptions of positive attitudes towards people with spinal cord injury. International Journal of Rehabilitation Research, 1995, 18:35-43. doi: http://dx.doi.org/10.1097/00004356-199501000-00004 PMID:7797318 20. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Social Science & Medicine, 1999, 48:977-988. doi: http://dx.doi.org/10.1016/S0277-9536(98)00411-0 PMID:10390038 21. Amundson R. Quality of life, disability, and hedonic psychology. Journal for the Theory of Social Behaviour, 2010, 40:374-392. doi: http://dx.doi.org/10.1111/j.1468-5914.2010.00437.x 22. Hernandez B et al. Construction and validation of the Disability Rights Attitude Scale: assessing attitudes toward the Americans with Disabilities Act (ADA). Rehabilitation Psychology, 1998, 43:203-218. doi: http://dx.doi. org/10.1037/0090-5550.43.3.203 23. Lyons M. Enabling or disabling? Students’ attitudes towards people with disabilities. The American Journal of Occupational Therapy., 1991, 45:311-316. 24. Peterson PA, Quarstein VA. Disability awareness training for disability professionals. Disability and Rehabilitation, 2001, 23:43-48. doi: http://dx.doi.org/10.1080/09638280150211293 PMID:11213323 25. Saketkoo L et al. Effects of a disability awareness and skills training workshop on senior medical students as assessed with self ratings and performance on a standardized patient case. Teaching and Learning in Medicine, 2004, 16:345-354. doi: http://dx.doi.org/10.1207/s15328015tlm1604_7 PMID:15582871 26. Ison N et al. “Just like you”: a disability awareness programme for children that enhanced knowledge, attitudes and acceptance: pilot study findings. Developmental Neurorehabilitation, 2010, 13:360-368. doi: http://dx.doi.org/10.3109/1751 8423.2010.496764 PMID:20828333 27. Rillotta F, Nettelbeck T. Effects of an awareness program on attitudes of students without an intellectual disability towards persons with an intellectual disability. Journal of Intellectual & Developmental Disability, 2007, 32:19-27. doi: http://dx.doi. org/10.1080/13668250701194042 PMID:17365364 28. Lindsay S, Edwards A. A systematic review of disability awareness interventions for children and youth. Disability and Rehabilitation, 2012,epub ahead of print PMID:22831703 29. Pointon A, Davies C. Framed: interrogating disability in the media. London, British Film Institute publications, 2008. 30. Rauch A et al. Rehabilitation needs assessment in persons with spinal cord injury following the 2010 earthquake in Haiti: a pilot study using an ICF-based tool. Journal of Rehabilitation Medicine, 2011, 43:969-975. doi: http://dx.doi. org/10.2340/16501977-0896 PMID:22031341 31. Hill R. Haiti Hospital Appeal Community Based Rehabilitation Pilot Survey –The effect of disability within families in Northern Haiti 2011. Haiti Hospital Appeal, 2011.Unpublished. 32. Phillips C. Reaching the “cocobai”: reconstruction and persons with disabilities in Haiti. Policy paper. Ottawa, FOCAL Canadian Foundation for the Americas, 2011. 33. United Nations. (UN) Panel discussion on sports for inclusive development: sports,disability and development: key to empowerment of persons with disabilities and their communities. New York, United Nations, 2011 (http://www.un.org/ disabilities/default.asp?id=1574/, accessed 29.5.2012) 34. Smith DL. Disparities in patient–physician communication for persons with a disability from the 2006 Medical Expenditure Panel Survey (MEPS). Disability and Health Journal, 2009, 2:206-215. doi: http://dx.doi.org/10.1016/j. dhjo.2009.06.002 PMID:21122761 35. Aulagnier M et al. General practitioners’ attitudes towards patients with disabilities: the need for training and support. Disability and Rehabilitation, 2005, 27:1343-1352. doi: http://dx.doi.org/10.1080/09638280500164107 PMID:16321918 36. Furlan JC et al. Attitudes towards the older patients with spinal cord injury among registered nurses: a cross-sectional observational study. Spinal Cord, 2009, 47:674-680. doi: http://dx.doi.org/10.1038/sc.2009.23 PMID:19365396
163
Querschnittlähmung – Internationale Perspektiven
37. Gerhart KA et al. Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Annals of Emergency Medicine, 1994, 23:807-812. doi: http://dx.doi.org/10.1016/S0196-0644(94)70318-3 PMID:8161051 38. Dorji S, Solomon P. Attitudes of health professionals toward persons with disabilities in Bhutan. Asia Pacific Disability Rehabilitation Journal, 2009, 20:32-42. 39. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf, accessed 10 May 2012). 40. Lucke KT. Knowledge acquisition and decision-making: spinal cord injured individuals perceptions of caring during rehabilitation. SCI Nursing, 1997, 14:87-95. PMID:9355615 41. Bach CA, McDaniel RW. Quality of life in quadriplegic adults: a focus group study. Rehabilitation Nursing, 1993, 18:364-367. doi: http://dx.doi.org/10.1002/j.2048-7940.1993.tb00790.x PMID:7938891 42. Eddey GE, Robey KL. Considering the culture of disability in cultural competence education. Academic Medicine, 2005, 80:706-712. doi: http://dx.doi.org/10.1097/00001888-200507000-00019 PMID:15980092 43. Shakespeare T, Iezzoni LI, Groce NE. Disability and the training of health professionals. Lancet, 2009, 374:1815-1816. doi: http://dx.doi.org/10.1016/S0140-6736(09)62050-X PMID:19957403 44. Spain R. In practice from the point of view of a disabled nurse. In: Swain J, French S, eds. Disability on equal terms. London, Sage, 2008. 45. Baum CM, Gray DB. The family and rehabilitation services: minimizing the impact on personal relationships. In: McColl M, Bickenbach J, eds. Introduction to disability. London, Saunders, 1998: 167–173. 46. Weitzenkamp DA et al. Spouses of spinal cord injury survivors, the added impact of caregiving. Archives of Physical Medicine and Rehabilitation, 1997, 78:822-827. doi: http://dx.doi.org/10.1016/S0003-9993(97)90194-5 PMID:9344300 47. Blanes L, Carmagnani MI, Ferreira LM. Health-related quality of life of primary caregivers of persons with paraplegia. Spinal Cord, 2007, 45:399-403. doi: http://dx.doi.org/10.1038/sj.sc.3102038 PMID:17310256 48. de Azevedo GR, Santos VL. Handicapped caregiver: the social representations of family members about the caregiving process. Revista Latino-Americana de Enfermagem, 2006, 14:770-780. doi: http://dx.doi.org/10.1590/S010411692006000500020 PMID:17117264 49. Post MW, Bloemen J, de Witte LP. Burden of support for partners of persons with spinal cord injuries. Spinal Cord, 2005, 43:311-319. doi: http://dx.doi.org/10.1038/sj.sc.3101704 PMID:15685263 50. Gajraj-Singh P. Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord, 2011, 49:928-934. doi: http://dx.doi.org/10.1038/sc.2011.15 PMID:21383762 51. Hagglund KJ et al. A comparison of consumer-directed and agency-directed personal assistance services programmes. Disability and Rehabilitation, 2004, 26:518-527. doi: http://dx.doi.org/10.1080/09638280410001672472 PMID:15204459 52. McLennan M et al. Rehabilitation learning needs: patient and family perceptions. Patient Education and Counseling, 1996, 27:191-199. doi: http://dx.doi.org/10.1016/0738-3991(95)00799-7 PMID:8788349 53. DeSanto-Madeya S. Adaptation to spinal cord injury for families post-injury. Nursing Science Quarterly, 2009, 22:57-66. doi: http://dx.doi.org/10.1177/0894318408327295 PMID:19176861 54. Schulz R et al. Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology, 2009, 54:1-15. doi: http://dx.doi.org/10.1037/a0014932 PMID:19618698 55. Elliott TR et al. Problem-solving training via videoconferencing for family caregivers of persons with spinal cord injuries: a randomized controlled trial. Behaviour Research and Therapy, 2008, 46(11):1220–1229 (E-pub 26 August 2008). 56. Elliott TR, Berry JW. Brief problem-solving training for family caregivers of persons with recent-onset spinal cord injuries: a randomized controlled trial. Journal of Clinical Psychology, 2009, 65:406-422. doi: http://dx.doi.org/10.1002/ jclp.20527 PMID:19229946 57. Aitken ME et al. Experiences from the development of a comprehensive family support program for pediatric trauma and rehabilitation patients. Archives of Physical Medicine and Rehabilitation, 2005, 86:175-179. doi: http://dx.doi.org/10.1016/j. apmr.2004.02.026 PMID:15641010 58. Holmbeck GN et al. Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions. Developmental and Behavioral Pediatrics, 2006, 27:249-277. doi: http://dx.doi. org/10.1097/00004703-200606000-00012 59. Mullins LL et al. The influence of respite care on psychological distress in parents of children with developmental disabilities: a longitudinal study. Children’s Services (Mahwah, N.J.), 2002, 5:123-138. doi: http://dx.doi.org/10.1207/ S15326918CS0502_06 60. Miles M. Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society, 2002, 17:643-658. doi: http://dx.doi.org/10.1080/0968759022000010425
164
Kapitel 6
Einstellungen, Beziehungen und Anpassung
61. Hartley S et al. How do carers of disabled children cope? The Ugandan perspective. Child: Care, Health and Development, 2005, 31:167-180. doi: http://dx.doi.org/10.1111/j.1365-2214.2004.00464.x PMID:15715696 62. Kumamoto K, Arai Y, Zarit SH. Use of home care services effectively reduces feelings of burden among family caregivers of disabled elderly in Japan: preliminary results. International Journal of Geriatric Psychiatry, 2006, 21:163-170. doi: http:// dx.doi.org/10.1002/gps.1445 PMID:16416464 63. Mayo-Wilson E, Montgomery P, Dennis JA. Personal assistance for adults (19–64) with physical impairments. [Review]Cochrane Database of Systematic Reviews, 2008, Issue 3:CD006856. doi: http://dx.doi.org/10.1002/14651858. CD006856.pub2 64. Sekaran P et al. Community reintegration of spinal cord-injured patients in rural south India. Spinal Cord, 2010, 48:628-632. doi: http://dx.doi.org/10.1038/sc.2010.6 PMID:20142832 65. Mansell J. Deinstitutionalisation and community living: progress, problems and priorities. Journal of Intellectual & Developmental Disability, 2006, 31:65-76. doi: http://dx.doi.org/10.1080/13668250600686726 PMID:16782591 66. Chiriacescu D. Shifting the paradigm in social service provision: making quality services accessible for people with disabilities in South East Europe. Belgrade, Disability Monitor Initiative for South East Europe, 2008. 67. Vaidyanathan S et al. Community-care waiting list for persons with spinal cord injury. Spinal Cord, 2001, 39:584-588. doi: http://dx.doi.org/10.1038/sj.sc.3101212 PMID:11641808 68. Müller R et al. The role of social support and social skills in people with spinal cord injury – a systematic review of the literature. Spinal Cord, 2012, 50:94-106. doi: http://dx.doi.org/10.1038/sc.2011.116 PMID:22006079 69. Bains P, Minhas AS. Profile of home-based caregivers of bedridden patients in North India. Indian Journal of Community Medicine, 2011, 36:114-119. doi: http://dx.doi.org/10.4103/0970-0218.84129 PMID:21976795 70. Lansley P et al. Adapting the homes of older people: a case study of costs and savings. Building Research and Information, 2004, 32:468-483. doi: http://dx.doi.org/10.1080/0961321042000269429 71. Kim KM, White GW, Fox MH. Comparing outcomes of persons choosing consumer-directed or agency-directed personal assistance services. Journal of Rehabilitation, 2006, 72:32-43. 72. DICAG. Disabled children’s action group (DICAG) South Africa. Manchester, Enabling Education Network, 2001 (http://www. eenet.org.uk/resources/docs/dicag.php, accessed 22 April 2012). 73. LaPlante MP et al. Unmet need for personal assistance services: estimating the shortfall in hours of help and adverse consequences. Journal of Gerontology. Series B, Psychological sciences and social sciences, 2004, 59:S98–S108. doi:10.1093/ geronb/59.2.S98 doi: http://dx.doi.org/10.1093/geronb/59.2.S98 PMID:15014097 74. Benjamin AE, Matthias R, Franke TM. Comparing consumer-directed and agency models for providing supportive services at home. [Part II]. Health Services Research, 2000, 35:351-366. PMID:10778820 75. Knickman JR, Stone RI. The public/private partnership behind the cash and counseling demonstration and evaluation: its origins, challenges, and unresolved issues. Health Services Research, 2007, 42:362-377. doi: http://dx.doi.org/10.1111/j.14756773.2006.00675.x PMID:17244288 76. Clark MJ, Hagglund KJ, Sherman AK. A longitudinal comparison of consumer-directed and agency-directed personal assistance service programmes among persons with physical disabilities. Disability and Rehabilitation, 2008, 30:689-695. doi: http://dx.doi.org/10.1080/09638280701463878 PMID:17852213 77. Kaye HS. The personal assistance workforce: trends in supply and demand. Health Affairs, 2006, 25:1113-1120. doi: http:// dx.doi.org/10.1377/hlthaff.25.4.1113 PMID:16835193 78. Warms CA et al. Measurement and description of physical activity in adult manual wheelchair users. Disability and Health Journal, 2008, 1:236-244. doi: http://dx.doi.org/10.1016/j.dhjo.2008.07.002 PMID:21122734 79. Kehn M, Kroll T. Staying physically active after spinal cord injury: a qualitative exploration of barriers and facilitators to exercise participation. BioMed Central Public Health, 2009, 9:168. doi: http://dx.doi.org/10.1186/1471-2458-9-168 PMID:19486521 80. Coble-Temple A, Mona LR, Bleecker T. Accessing personal assistance services in the workplace: struggles and successes. Journal of Vocational Rehabilitation, 2003, 18:113-123. 81. Weitzenkamp DA, Whiteneck GG, Lammertse DP. Predictors of personal care assistance for people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2002, 83:1399-1405. doi: http://dx.doi.org/10.1053/ apmr.2002.35087 PMID:12370876 82. Clevnert U, Johansson L. Personal assistance in Sweden. Journal of Aging & Social Policy, 2007, 19:65-80. doi: http://dx.doi. org/10.1300/J031v19n03_05 PMID:17613470
165
Querschnittlähmung – Internationale Perspektiven
83. Takamine Y. The cultural perspectives of independent living and self-help movement of people with disabilities: a review of empirical findings. Asia Pacific Journal on Disability, 1998 (http://www.dinf.ne.jp/doc/english/asia/resource/z00ap/002/ z00ap00208.html, accessed 25 April 2012). 84. Bieler RB. Independent living in Latin America: progress in adapting a “First World” philosophy to the realities of the “Third World”. In: Garcia Alonso JV, ed. El movimiento de vida independiente: experiencias internacionales. Madrid, Fundación Luis Vives, 2003: 218–242. 85. NSIS. National Serious Injury Service. Wellington, Accident Compensation Corporation, Government of New Zealand, 2008 (http://www.acc.co.nz/making-a-claim/how-do-i-make-a-claim/ECI0012, accessed 27 April 2012). 86. Riddell S et al. The development of direct payments: implications for social justice. Social Policy and Society, 2005, 4:75-85. doi: http://dx.doi.org/10.1017/S1474746404002209 87. Schopp LH et al. Evaluation of a consumer-personal assistant training project. Disability and Rehabilitation, 2007, 29:403410. doi: http://dx.doi.org/10.1080/09638280600835903 PMID:17364793 88. Hagglund KJ et al. Consumer-assistant education to reduce the occurrence of urinary tract infections among persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2005, 10:53-62. doi: http://dx.doi.org/10.1310/JQ0J-BX6J-RAPB-P2T4 89. van Leeuwen CMC et al. Social support and life satisfaction in spinal cord injury during and up to one year after inpatient rehabilitation. Journal of Rehabilitation Medicine, 2010, 42:265-271. doi: http://dx.doi.org/10.2340/16501977-0502 PMID:20411223 90. Whiteneck G et al. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1793-1803. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.024 PMID:15520974 91. Pearcey TE, Yoshida KK, Renwick RM. Personal relationships after a spinal cord injury. International Journal of Rehabilitation Research, 2007, 30:209-219. doi: http://dx.doi.org/10.1097/MRR.0b013e32829fa3c1 PMID:17762766 92. Jensen MP et al. Psychosocial factors and adjustment to chronic pain in persons with physical disabilities: a systematic review. Archives of Physical Medicine and Rehabilitation, 2011, 92:146-160. doi: http://dx.doi.org/10.1016/j. apmr.2010.09.021 PMID:21187217 93. Feher S, Maly R. Coping with breast cancer in later life: the role of religious faith. Psycho-Oncology, 1999, 8:408-416. doi: http://dx.doi.org/10.1002/(SICI)1099-1611(199909/10)8:5<408::AID-PON409>3.0.CO;2-5 PMID:10559800 94. McColl MA et al. Changes in spiritual beliefs after traumatic disability. Archives of Physical Medicine and Rehabilitation, 2000, 81:817-823. PMID:10857530 95. Matheis EN, Tulsky DS, Matheis RJ. The relationship between spirituality and quality of life among individuals with spinal cord injury. Rehabilitation Psychology, 2006, 51:265-271. doi: http://dx.doi.org/10.1037/0090-5550.51.3.265 96. Forchheimer MB, Tate DG. The relationship of spirituality and depression to health among people with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2007, 12:23-34. doi: http://dx.doi.org/10.1310/sci1203-23 97. George LK et al. Spirituality and health: what we know, what we need to know. Journal of Social and Clinical Psychology, 2000, 19:102-116. doi: http://dx.doi.org/10.1521/jscp.2000.19.1.102 98. Franklin KL et al. Relationships among religiousness, spirituality, and health for individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2008, 14:76-88. doi: http://dx.doi.org/10.1310/sci1402-76 PMID:20351789 99. Babamohamadi H, Negarandeh R, Dehghan-Naveri N. Barriers to and facilitators of coping with a spinal cord injury for Iranian patients: a qualitative study. Nursing & Health Sciences, 2011, 13:207-215. doi: http://dx.doi.org/10.1111/j.14422018.2011.00602.x PMID:21595815 100. DeVivo MJ, Fine PR. Spinal cord injury: its short-term impact on marital status. Archives of Physical Medicine and Rehabilitation, 1985, 66:501-504. PMID:4026550 101. Crewe NM, Krause JS. Marital relationships and spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1988, 69:435-438. PMID:3377669 102. DeVivo MJ et al. Outcomes of post-spinal cord injury marriages. Archives of Physical Medicine and Rehabilitation, 1995, 76:130-138. doi: http://dx.doi.org/10.1016/S0003-9993(95)80022-0 PMID:7848071 103. Kreuter M et al. Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury. Spinal Cord, 1998, 36:252-261. doi: http://dx.doi.org/10.1038/sj.sc.3100592 PMID:9589525 104. Craig AR et al. Immunizing against depression and anxiety after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1998, 79:375-377. doi: http://dx.doi.org/10.1016/S0003-9993(98)90136-8 PMID:9552101 105. Arango-Lasprilla JC et al. Influence of race/ethnicity on divorce/separation 1, 2, and 5 years post spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:1371-1378. doi: http://dx.doi.org/10.1016/j.apmr.2009.02.006 PMID:19651271 106. DeVivo M, Richards JS. Community reintegration and quality of life following spinal cord injury. Paraplegia, 1992, 30:108-112. 107. El Ghatti AZ, Hanson RW. Outcome of marriages existing at the time of a male’s spinal cord injury. Journal of Chronic Diseases, 1975, 28:383-388. doi: http://dx.doi.org/10.1016/0021-9681(75)90034-X PMID:1159036
166
Kapitel 6
Einstellungen, Beziehungen und Anpassung
108. Chen HY, Boore JR. Living with a relative who has a spinal cord injury: a grounded theory approach. Journal of Clinical Nursing, 2009, 18:174-182. doi: http://dx.doi.org/10.1111/j.1365-2702.2008.02355.x PMID:19120747 109. Bocarro J, Sable J. Finding the right P.A.T.H: exploring the familial relationships and the role of a community TR program in the initial years after a spinal cord injury. Therapeutic Recreation Journal, 2003, 37:58-72. 110. Kreuter M. Spinal cord injury and partner relationships. Spinal Cord, 2000, 38:2-6. 111. Kennedy P et al. A multi-centre study of the community needs of people with spinal cord injuries: the first 18 months. Spinal Cord, 2010, 48:15-20. doi: http://dx.doi.org/10.1038/sc.2009.65 PMID:19528997 112. van Koppenhagen CF et al. Changes and determinants of life satisfaction after spinal cord injury: a cohort study in the Netherlands. Archives of Physical Medicine and Rehabilitation, 2008, 89:1733-1740. doi: http://dx.doi.org/10.1016/j. apmr.2007.12.042 PMID:18675395 113. Kreuter M, Sullivan M, Siösteen A. Sexual adjustment after spinal cord injury – comparison of partner experiences in pre- and postinjury relationships. Paraplegia, 1994, 32:759-770. doi: http://dx.doi.org/10.1038/sc.1994.122 PMID:7885719 114. Phelps J et al. Spinal cord injury and sexuality in married or partnered men: activities, function, needs, and predictors of sexual adjustment. Archives of Sexual Behavior, 2001, 30:591-602. doi: http://dx.doi.org/10.1023/A:1011910900508 PMID:11725457 115. Anderson KD et al. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 2007, 45:328-337. PMID:17033620 116. Sakellariou D, Sawada Y. Sexuality after spinal cord injury: the Greek male’s perspective. The American Journal of Occupational Therapy, 2006, 60:311-319. doi: http://dx.doi.org/10.5014/ajot.60.3.311 PMID:16776398 117. Sharma SC et al. Assessment of sexual functions after spinal cord injury in Indian patients. International Journal of Rehabilitation Research, 2006, 29:17-25. doi: http://dx.doi.org/10.1097/01.mrr.00001855947.56810.fc PMID:16432385 118. Zhang J. A survey of the needs of and services for persons with physical disability in China. Asia Pacific Disability Rehabilitation Journal, 2007, 18:49-85. 119. Anderson CJ et al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine, 2004, 27:S98-S106. PMID:15503711 120. Kreuter M, Sullivan M, Siösteen A. Sexual adjustment after spinal cord injury (SCI) focusing on partner experiences. Paraplegia, 1994, 32:225-235. doi: http://dx.doi.org/10.1038/sc.1994.42 PMID:8022632 121. Kreuter M, Siösteen A, Biering-Sørensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. Journal of Rehabilitation Medicine, 2008, 40:61-69. doi: http://dx.doi.org/10.2340/16501977-0128 PMID:18176739 122. Ville I, Ravaud J-F. Tetrafigap Group. Subjective well-being and severe motor impairments: the Tetrafigap survey on the long-term outcome of tetraplegic spinal cord injured persons. Social Science & Medicine, 2001, 52:369-384. doi: http:// dx.doi.org/10.1016/S0277-9536(00)00140-4 PMID:11330772 123. DeJong G, Branch LG, Corcoran PJ. Independent living outcomes in spinal cord injury: multivariate analyses. Archives of Physical Medicine and Rehabilitation, 1984, 65:66-73. PMID:6696605 124. Holicky R, Charlifue S. Ageing with spinal cord injury: the impact of spousal support. Disability and Rehabilitation, 1999, 21:250-257. doi: http://dx.doi.org/10.1080/096382899297675 PMID:10381237 125. Berkman AH et al. Sexual adjustment of spinal cord injured veterans living in the community. Archives of Physical Medicine and Rehabilitation, 1978, 59:29-33. PMID:619850 126. Murphy N, Young PC. Sexuality in children and adolescents with disabilities. Developmental Medicine and Child Neurology, 2005, 47:640-644. PMID:16138674 127. Fronek P et al. The effectiveness of a sexuality training program for the interdisciplinary spinal cord injury rehabilitation team. Sexuality and Disability, 2005, 23:51-63. doi: http://dx.doi.org/10.1007/s11195-005-4669-0 128. Post MWM et al. Sexological competence of different rehabilitation disciplines and effects of a discipline-specific sexological training. Sexuality and Disability, 2008, 26:3-14. doi: http://dx.doi.org/10.1007/s11195-007-9068-2 129. Forsythe E, Horsewell JE. Sexual rehabilitation of women with spinal cord injury. Spinal Cord, 2006, 44:234-241. doi: http:// dx.doi.org/10.1038/sj.sc.3101844 PMID:16172622 130. Fisher TL et al. Sexual health after spinal cord injury: a longitudinal study. Archives of Physical Medicine and Rehabilitation, 2002, 83:1043-1051. doi: http://dx.doi.org/10.1053/apmr.2002.33654 PMID:12161824 131. Urey JR, Henggeler SW. Marital adjustment following spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1987, 68:69-74. PMID:3813859 132. Sheija A, Manigandan C. Efficacy of support groups for spouses of patients with spinal cord injury and its impact on their quality of life. International Journal of Rehabilitation Research, 2005, 28:379-383. doi: http://dx.doi.org/10.1097/00004356200512000-00015 PMID:16319568
167
Querschnittlähmung – Internationale Perspektiven
133. Crewe NM, Krause JS. Marital status and adjustment to spinal cord injury. The Journal of the American Paraplegia Society, 1992, 15:14-18. 134. Holmbeck GN, Devine KA. Psychosocial and family functioning in spina bifida. Developmental Disabilities Research Reviews, 2010, 16:40-46. doi: http://dx.doi.org/10.1002/ddrr.90 PMID:20419770 135. Boyer BA et al. Prevalence and relationships of post-traumatic stress in families experiencing pediatric spinal cord injury. Rehabilitation Psychology, 2000, 45:339-355. doi: http://dx.doi.org/10.1037/0090-5550.45.4.339 136. Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta analysis. Journal of Pediatric Psychology, 2002, 27:699-710. doi: http://dx.doi.org/10.1093/jpepsy/27.8.699 PMID:12403860 137. Bellin MH et al. Factors associated with the psychological and behavioural adjustment of siblings of youths with spina bifida. Families, Systems & Health, 2009, 27:1-15. doi: http://dx.doi.org/10.1037/a0014859 PMID:19630441 138. Skowronski E, Hartman K. Obstetric management following traumatic tetraplegia: case series and literature review. Australian and New Zealand Journal of Obstetrics and Gynaecology, 2008, 48:485-491. doi: http://dx.doi.org/10.1111/j.1479828X.2008.00909.x PMID:19032665 139. Jackson AB. Pregnancy and delivery. Sexuality and Disability, 1996, 14:211-219. doi: http://dx.doi.org/10.1007/ BF02590079 140. Alexander CJ, Hwang K, Sipski ML. Mothers with spinal cord injuries: impact on marital, family, and children’s adjustment. Archives of Physical Medicine and Rehabilitation, 2002, 83:24-30. doi: http://dx.doi.org/10.1053/apmr.2002.27381 PMID:11782828 141. Buck FM, Hohmann GW. Personality, behaviour, values and family relations of children of fathers with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1981, 62:432-438. PMID:6456711 142. Quigley MC. Impact of spinal cord injury on the life roles of women. The American Journal of Occupational Therapy, 1995, 49:780-786. doi: http://dx.doi.org/10.5014/ajot.49.8.780 PMID:8526223 143. Duvdevany I, Buchbinder E, Yaacov I. Accepting disability: the parenting experience of fathers with spinal cord injury. Qualitative Health Research, 2008, 18:1021-1033. doi: http://dx.doi.org/10.1177/1049732308318825 PMID:18650559 144. Aldridge J, Sharpe D. Pictures of young caring. Loughborough, University of Loughborough, 2007. 145. Isaksson G et al. Women’s perceptions of change in the social network after a spinal cord injury. Disability and Rehabilitation, 2005, 27:1013-1021. doi: http://dx.doi.org/10.1080/09638280500030431 PMID:16096255 146. Augutis M et al. Psychosocial aspects of traumatic spinal cord injury with onset during adolescence: a qualitative study. The Journal of Spinal Cord Medicine, 2007, 30:S55-S64. PMID:17874688 147. Cornegé-Blokland E et al. Quality of life of children with spina bifida in Kenya is not related to the degree of the spinal defects. Tropical Medicine & International Health, 2011, 16:30-36. doi: http://dx.doi.org/10.1111/j.1365-3156.2010.02680.x PMID:21070514 148. Mukherjee S. Transition to adulthood in spina bifida: changing roles and expectations. TheScientificWorldJournal, 2007, 7:1890-1895. doi: http://dx.doi.org/10.1100/tsw.2007.179 PMID:18060327 149. Thibadeau JK, Ariksson-Schmidt AI, Zabel TA. The National Spina Bifida Program transition initiative: the people, the plan and the process. Pediatric Clinics of North America, 2010, 57:903-910. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.010 PMID:20883880 150. Spina Bifida. Becoming an adult living successfully with spina bifida. SB Preparations (http://www.sbpreparations.com, accessed 24 May 2012). 151. Ridosh M et al. Transition in young adults with spina bifida: a qualitiative study. Child: Care, Health and Development, 2011, 37:866-874. doi: http://dx.doi.org/10.1111/j.1365-2214.2011.01329.x PMID:22007987 152. Ruck J, Dahan-Oliel N. Adolescence and young adulthood in spina bifida: self-report on care received and readiness for the future. Topics in Spinal Cord Injury Rehabilitation, 2010, 16:26-37. doi: http://dx.doi.org/10.1310/sci1601-26 153. Bellin MH, Kovacs PJ, Sawin KJ. Risk and protective influences in the lives of siblings of youth with spina bifida. Health & Social Work, 2008, 33:199-209. doi: http://dx.doi.org/10.1093/hsw/33.3.199 PMID:18773795 154. Webster G, Hindson LM. The adaptation of children to spinal cord injury of a family member: the individual’s perspective. SCI Nursing, 2004, 21:82-87. PMID:15553078 155. Gerschick TJ, Miller AS. Coming to terms: masculinity and physical disability. In: Sabo DF, Gordon DF, eds. Men’s health and illness: gender, power, and the body. Thousand Oaks, CA, Sage Publications, 1995 183–204. 156. Buchanan KM, Elias LJ. Psychological distress and family burden following spinal cord injury: concurrent traumatic brain injury cannot be overlooked. Axone (Dartmouth, N.S.), 2001, 22:16-17. PMID:14625968 157. Post MW et al. Predictors of health status and life satisfaction in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1998, 79:395-401. doi: http://dx.doi.org/10.1016/S0003-9993(98)90139-3 PMID:9552104 158. Charlifue S, Gerhart K. Changing psychosocial morbidity in people aging with spinal cord injury. NeuroRehabilitation, 2004, 19:15-23. PMID:14988584 159. Livneh H, Antonak RF. Psychosocial adjustment to chronic illness and disability. Gaithersburg, MD, Aspen Publishers, 1997.
168
Kapitel 6
Einstellungen, Beziehungen und Anpassung
160. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http:// dx.doi.org/10.1038/sc.2011.182 PMID:22270190 161. Krause JS. Aging, life satisfaction, and self-reported problems among participants with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2010, 15:34-40. doi: http://dx.doi.org/10.1310/sci1503-34 162. Moos RH, Holahan CJ. Adaptive tasks and methods of coping with illness and disability. In: Martz E, Livneh H, eds. Coping with chronic illness and disability: theoretical, empirical and clinical aspects. New York, NY, Springer, 2007. 163. van Leeuwen CMC et al. Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review. Spinal Cord, 2012, 50:174-187. PMID:22042298 164. van Lankveld W, van Diemen T, van Nes I. Coping with spinal cord injury: tenacious goal pursuit and flexible goal adjustment. Journal of Rehabilitation Medicine, 2011, 43:923-929. PMID:21947183 165. Chappell P, Wirz S. Quality of life following spinal cord injury for 20−40 year old males living in Sri Lanka. Asia Pacific Disability Rehabilitation Journal, 2003, 14:162-178. 166. Salick EC, Auerbach CF. From devastation to integration: adjusting to and growing from medical trauma. Qualitative Health Research, 2006, 16:1021-1037. doi: http://dx.doi.org/10.1177/1049732306292166 PMID:16954523 167. Chau L et al. Women living with a spinal cord injury: perceptions about their changed bodies. Qualitative Health Research, 2008, 18:209-221. doi: http://dx.doi.org/10.1177/1049732307312391 PMID:18216340 168. Slivinski J, Mehta S, Teasell RW. Depression following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010. 169. Orenczuk S et al. Depression following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010. 170. Mehta S et al. An evidence-based review of the effectiveness of cognitive behavioral therapy for psychosocial issues postspinal cord injury. Rehabilitation Psychology, 2011, 56:15-25. doi: http://dx.doi.org/10.1037/a0022743 PMID:21401282 171. King C, Kennedy P. Coping effectiveness training for people with spinal cord injury. The British Journal of Clinical Psychology, 1999, 38:5-14. doi: http://dx.doi.org/10.1348/014466599162629 PMID:10212733 172. Kennedy P et al. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. The British Journal of Clinical Psychology, 2003, 42:41-52. doi: http://dx.doi.org/10.1348/014466503762842002 PMID:12675978 173. Duchnick JJ, Letsch EA, Curtiss G. Coping effectiveness training during acute rehabilitation of spinal cord injury/dysfunction: a randomized clinical trial. Rehabilitation Psychology, 2009, 54:123-132. doi: http://dx.doi.org/10.1037/a0015571 PMID:19469601 174. Sin NL, Lyubomirsky S. Enhancing well-being and alleviating depressive symptoms with positive psychology interventions: a practice-friendly meta-analysis. Journal of Clinical Psychology, 2009, 65:467-487. doi: http://dx.doi.org/10.1002/ jclp.20593 PMID:19301241 175. Peter C et al. Psychological resources in spinal cord injury: a systematic literature review. Spinal Cord, 2012, 50:188-201. doi: http://dx.doi.org/10.1038/sc.2011.125 PMID:22124343 176. Zahl ML et al. SCI/D forum to increase active living: the effect of a self-efficacy and self-affirmation based SCI/D forum on active living in adults with spinal cord injury/disease. SCI Psychosocial Process, 2008, 21:5-13. 177. Rose A et al. The effect of a self-efficacy based forum on life satisfaction for individuals with spinal cord injury or disease. Annual in Therapeutic Recreation, 2008, 16:49-56. 178. Kennedy P, Taylor N, Hindson L. A pilot investigation of a psychosocial activity course for people with spinal cord injuries. Psychology Health and Medicine, 2006, 11:91-99. doi: http://dx.doi.org/10.1080/13548500500330494 PMID:17129898 179. Latimer AE, Ginis KAM, Arbour KP. The efficacy of an implementation intention intervention for promoting physical activity among individuals with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology, 2006, 51:273-280. doi: http://dx.doi.org/10.1037/0090-5550.51.4.273 180. Arbour-Nicitopoulos KP, Ginis KA, Latimer AE. Planning, leisure-time physical activity, and coping self-efficacy in persons with spinal cord injury: a randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 2009, 90:2003-2011. doi: http://dx.doi.org/10.1016/j.apmr.2009.06.019 PMID:19969161 181. Tate DG, Forchheimer M. Enhancing community reintegration after inpatient rehabilitation for persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 1998, 4:42-55. doi: http://dx.doi.org/10.1310/FK0R-2K94-BN99-52FY 182. Wiles R, Cott C, Gibson BE. Hope, expectations and recovery from illness: a narrative synthesis of qualitative research. Journal of Advanced Nursing, 2008, 64:564-573. doi: http://dx.doi.org/10.1111/j.1365-2648.2008.04815.x PMID:19120569 183. Kortte KB et al. Positive psychological variables in the prediction of life satisfaction after spinal cord injury. Rehabilitation Psychology, 2010, 55:40-47. doi: http://dx.doi.org/10.1037/a0018624 PMID:20175633 184. Payne JA. The contribution of group learning to the rehabilitation of spinal cord injured adults. Rehabilitation Nursing, 1993, 18:375-379. doi: http://dx.doi.org/10.1002/j.2048-7940.1993.tb00792.x PMID:7938893
169
Querschnittlähmung – Internationale Perspektiven
185. House LA et al. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives. Spinal Cord, 2009, 47:882-886. doi: http://dx.doi.org/10.1038/sc.2009.64 PMID:19528994 186. SCIA. Spinal Cord Injuries Australia (http://scia.org.au, accessed 5 April 2013). 187. Killeen G. Taxi discrimination complaint settled. Accord, Winter 2011, pp. 10−11 (http://scia.org.au/images/SCIA-media/ publications/accord/Accord%202011%20Winter.pdf?bcsi_scan_97961A1EAF8C426F=x54bUmSQODtKN2kJiJYmnwwV7N5V AAAAtIQqDg==&bcsi_scan_filename=Accord%202011%20Winter.pdf, accessed 20 February 2012). 188. ESCIF. European Spinal Cord Injury Federation (http://www.escif.org/, accessed 20 March 2012). 189. GSCICN. Global Spinal Cord Injury Consumer Network (http://globalsci.net/, accessed 19 April 2012). 190. Livability Ireland (http://www.livability.ie, accessed 17 April 2013). 191. Motivation. Freedom through mobility (http://www.motivation.org.uk, accessed 26 April 2013). 192. Gilson SF, Tusler A, Gill C. Ethnographic research in disability identity: self-determination and community. Journal of Vocational Rehabilitation, 1997, 9:7-17. doi: http://dx.doi.org/10.1016/S1052-2263(97)00017-2 193. Campbell J, Oliver M. Disability politics: understanding our past, changing our future. London, Macmillan, 1996. 194. Ville I et al. Disability and a sense of community belonging. A study among tetraplegic spinal-cord-injured persons in France. Social Science & Medicine, 2003, 56:321-332. doi: http://dx.doi.org/10.1016/S0277-9536(02)00030-8 PMID:12473317 195. Manns PJ, Chad K. Determining the relation between quality of life, handicap, fitness, and physical activity for persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1566-1571. doi: http://dx.doi.org/10.1016/ S0003-9993(99)90331-3 PMID:10597807 196. Monnazzi G. Paraplegics and sports: a psychological survey. International Journal of Sport Psychology, 1982, 13:85-95. 197. Hanson CS, Nabavi D, Yuen HK. The effect of sports on level of community integration as reported by persons with spinal cord injury. The American Journal of Occupational Therapy, 2001, 55:332-338. doi: http://dx.doi.org/10.5014/ ajot.55.3.332 PMID:11723975 198. Madorsky JGB, Madorsky A. Wheelchair racing: an important modality in acute rehabilitation after paraplegia. Archives of Physical Medicine and Rehabilitation, 1983, 64:186-187. PMID:6838349 199. McVeigh SA et al. Influence of sport participation on community integration and quality of life: a comparison between sport participants and non-sport participants with spinal cord injury. The Journal of Spinal Cord Medicine, 2009, 32:115124. PMID:19569458 200. Martin Ginis KA et al. Physical activity and subjective well-being among people with spinal cord injury: a meta-analysis. Spinal Cord, 2010, 48:65-72. doi: http://dx.doi.org/10.1038/sc.2009.87 PMID:19581918 201. Slater D, Meade MA. Participation in recreation and sports for persons with spinal cord injury: review and recommendations. NeuroRehabilitation, 2004, 19:121-129. PMID:15201471 202. Tasiemski T, Brewer BW. Athletic identity, sport participation and psychological adjustments in people with spinal cord injury. Adapted Physical Activity Quarterly; APAQ, 2011, 28:233-250. PMID:21725116 203. Anneken V et al. Influence of physical exercise on quality of life in individuals with spinal cord injury. Spinal Cord, 2010, 48:393-399. doi: http://dx.doi.org/10.1038/sc.2009.137 PMID:19841634 204. Wu SK, Williams T. Factors influencing sport participation among athletes with spinal cord injury. Medicine and Science in Sports and Exercise, 2001, 33:177-182. doi: http://dx.doi.org/10.1097/00005768-200102000-00001 PMID:11224802 205. Cooper M. Come, fly with me! Sports N’Spokes, 2004, 30:8-13. 206. Martin B. Bike on! Sports N’Spokes, 2001, 27:43-49. 207. Thompson M. Flip pin’out. Sports N’Spokes, 1999, 25:16-18. 208. Motivation. The affordable, quality sports wheelchair 2011. (http://www.motivation.org.uk/sports/sports-wheelchair, accessed 14 April 2011).
170
Kapitel 7 Zugängliche Umwelten für Querschnittgelähmte
„Nach einigen Monaten im Krankenhaus und bei der Rehabilitation, wurde ich mit zahlreichen Herausforderungen konfrontiert, als ich in mein persönliches Umfeld zurückkehrte. Die erste Herausforderung war, dass ich nicht zu meinem Arbeitsplatz im dritten Stock eines fünf Jahre alten Gebäudes gelangen konnte. Ich konnte die Treppe nicht mehr benutzen und es gab keinen Aufzug. Auch konnte ich viele Dienste aufgrund der Bauweise der Gebäude in meinem Wohnort nicht in Anspruch nehmen. Ich musste lange Wegstrecken zurücklegen, um Dienstanbieter zu finden, die sich in einem für mich zugänglichen Gebäude befanden. Mein Auto wurde völlig zerstört, als auf mich geschossen wurde, und ich war auf öffentliche Verkehrsmittel angewiesen. Viele Fahrer waren nicht Willens, eine Person im Rollstuhl zu transportieren. Es gibt viel zu tun für die Regierung, um die Gesetze in diesem Bereich durchzusetzen.“ (Robert, Uganda) „Die Zugänglichkeit zu den Krankenhäusern war ein weiteres Problem. Zwar waren alle größeren Kliniken rollstuhlzugängig, Praxen wie die des Zahnarztes, Augenarztes usw. hingegen nicht. Manche befanden sich sogar im zweiten oder dritten Stock eines Gebäudes, das über keinen Aufzug verfügte. In Fällen wie diesen musste ich in meinem Rollstuhl sitzend die Treppen hinaufgetragen werden. Dies war nicht nur schwierig sondern auch gefährlich und kam sehr häufig vor. Die Toiletten in den Krankenhäusern waren nicht rollstuhlfreundlich. Die Einstellung dazu war vermutlich: ‚Wir haben nicht viele Patienten mit Querschnittlähmung, warum also sollten wir deshalb Platz verschwenden?‘“ (Alexis, Indien) „Wenn ich mit meinem Elektrorollstuhl etwas unternehmen oder erledigen möchte kann ich ein Taxi, öffentliche Verkehrsmittel oder einen Hochgeschwindigkeitszug nehmen. Alle diese Möglichkeiten sind jedoch teuer, selbst mit der Ermäßigung, die behinderte Personen erhalten. Es gibt nur wenige Busse mit eingebauten Liften und man muss diese eine Woche vorher buchen. In einem Notfall kann man also nicht auf den Bus als Beförderungsmittel zählen. Außerdem verfügen nur wenige Buslinien über Bushaltestellen ohne Treppenstufen. Deshalb nutze ich meistens ein Taxi um von A nach B zu kommen, was sehr teuer ist.“ (Co-Han Yee, Taiwan, China) „Es ist sehr schwierig für mich, das Haus zu verlassen. Die Gehwege sind sehr uneben und in schlechtem Zustand. Ich bin immer auf andere angewiesen, um mich fortbewegen zu können. Die öffentlichen Verkehrsmittel in meinem Stadtteil sind nur begrenzt verfügbar und es macht mir große Mühe, sie zu nutzen, selbst mit Hilfe von anderen. Es ist mir nicht möglich, unabhängig zu leben. Wie soll ich so am gesellschaftlichen Leben teilhaben? Ich bin frustriert. Ich nehme Kokain und Marihuana. Ich spiele Gitarre.“ (Diego, Argentinien) „Ich habe mein Haus nach dem Erdbeben wieder aufgebaut; das ursprüngliche Gebäude wurde komplett zerstört. Aber meine Familie und ich hatten keine Ahnung, wie wir die Räume und Einrichtung für mich gestalten sollten, damit ich mich darin bewegen konnte. Die NGO nahm Anpassungen in meinem Badezimmer sowie der Küche vor, damit ich mich besser bewegen konnte. Vor der Anpassung konnte ich noch nicht einmal mein Badezimmer benutzen, aber nun kann ich selbständig ein Bad nehmen. Ich kann im Rollstuhl sitzend Mahlzeiten zubereiten. Alles ist zweckmäßig und ich habe keine größeren Probleme, wenn ich zuhause bin.“ (Chen, China)
7
Zugängliche Umwelten für Querschnittgelähmte Physische Umgebungen können die Teilhabe von Menschen mit Querschnittlähmungen (QSL) erleichtern, oder aber sie stellen ein Hindernis für die Teilhabe dar. Zugänglichkeit gehört zu den allgemeinen übergreifenden Prinzipien, die in Artikel 3 der UN-Konvention über die Rechte von Menschen mit Behinderungen (BRK) aufgelistet werden, während Artikel 9 speziell die Bedeutung der Zugänglichkeit hervorhebt, Gebäude und Personenbeförderung eingeschlossen (1). Zugänglichkeit garantiert das Recht auf eine unabhängige Lebensführung (Artikel 19) und volle Teilhabe in allen Lebensbereichen; eine Nichterfüllung der Zugänglichkeit kann diskriminierend sein. Dieses Kapitel konzentriert sich auf die Wohnverhältnisse, Personenbeförderung und die ö entliche Infrastruktur, die notwendig ist, um diese Ergebnisse zu erreichen. Die physische Umgebung und die Personenbeförderung gehören zu den wesentlichen Umweltbarrieren für Menschen mit QSL (2–6). Daten über die Auswirkungen dieser Faktoren auf die Teilhabe sind noch immer spärlich (7). Maßnahmen zur Scha ung einer verbesserten Zugänglichkeit sollten dem Bedarfsspektrum von Menschen mit QSL entsprechen: Es ist entscheidend, eine Unterkun rollstuhlgängig zu machen; wenn die Zugänglichkeit jedoch an der Eingangstüre endet und die betro ene Person sich nicht in ihrem persönlichen Umfeld eigenständig bewegen, die ö entlichen Verkehrsmittel nutzen und an Bildung, Arbeit oder anderen sozialen Aktivitäten teilhaben kann, stellt die Umwelt weiterhin eine Barriere dar. Zwar sind Strategien zur Entwicklung der Zugänglichkeit durch Kosten und Personal eingeschränkt, Schritt für Schritt können jedoch immer Verbesserungen erzielt werden (8). Länder, die die BRK rati ziert haben, müssen ihre Fortschritte zur vollständigen Zugänglichkeit durch das Konzept der „schrittweisen Umsetzung“ mit Daten belegen. Zugänglichkeit für Querschnittgelähmte zu gewährleisten macht es für die restliche Bevölkerung ebenfalls einfacher, sich fortzubewegen.
Barrieren für Menschen mit Querschnittlähmung Die Reintegration in die Gemeinscha hängt davon ab, inwieweit eine querschnittgelähmte Person Umweltbarrieren überwinden kann. In diesem 173
Querschnittlähmung – Internationale Perspektiven
Abschnitt werden die Umweltbarrieren nach und nach untersucht. Das Kapitel beginnt mit den Wohnverhältnissen, in welche eine Person nach der Erstrehabilitation zurückkehren muss. Danach geht es um die Personenbeförderung, die für die Teilhabe am gesellscha lichen Leben maßgeblich ist, und schließlich endet der Abschnitt mit der ö entlichen Infrastruktur, zu der beispielsweise Schulen und der Arbeitsplatz gehören. Der Zugang ist notwendig, um das Recht auf Bildung und Arbeit in Anspruch nehmen zu können.
Wohnverhältnisse Das Zuhause stellt die wichtigste Umwelt im Leben dar (9–11). Für erwachsene Querschnittgelähmte kann es zu Problemen führen, wenn sie nach der Entlassung aus der Rehabilitationsklinik mit Barrieren wie Treppenstufen, zu kleinen Badezimmern und nicht zugänglichen Küchen konfrontiert werden (12–14). Dies bedeutet, dass sie „in ihrem eigenen Zuhause gefangen sind“ (15). Infolgedessen werden sie häu g als „Bettenblockierer“ bezeichnet. D. h. sie sind Patienten, die sich soweit erholt haben, dass sie entlassen werden könnten, sie müssen jedoch im Krankenhaus bleiben, weil ihre Wohnverhältnisse nicht ausreichend zugänglich sind (16, 17). Der ungedeckte Bedarf an zugänglichen Unterkün en ist ein weltweites Problem für Menschen mit Behinderungen. Dies gilt insbesondere für jene mit einer eingeschränkten Mobilität wie im Falle einer QSL, obwohl es nur wenige Daten gibt, die dies belegen. Datenerhebungen aus dem südlichen Afrika zeigen, dass behinderte Personen generell in Unterkün en leben, deren Qualität im Vergleich zu Unterkünften von nicht-behinderten Personen niedriger ist (18). Studien in verschiedenen Regionen weltweit weisen darauf hin, dass Menschen mit einer eingeschränkten Mobilität und anderen Einschränkungen nur beschränkt unabhängig wohnen können, wobei angemerkt werden sollte, dass das Zusammenleben mit der Familie generell üblich 174
ist in solchen Kontexten (19, 20). Sogar in Ländern mit einer großen Anzahl an Hauseigentümern, kann eine nanzielle Unterstützung für die Wohnraumanpassung unangemessen sein (21). Im Vereinigten Königreich haben Studien beispielsweise gezeigt, dass die Versorgung von Menschen mit Behinderungen unzureichend ist im Bereich der Zugänglichkeit von Wohngebäuden und der nanziellen Unterstützung zur Deckung von Anpassungskosten (22–24). Es wird geschätzt, dass ca. 78.000 Rollstuhlfahrer im Vereinigten Königreich ungedeckte Bedürfnisse bezüglich der Wohnverhältnisse haben (25). Wenn eine Person mit QSL sich keine eigene Unterkun leisten kann und keine Möglichkeit besteht, bei Verwandten zu wohnen, können Sozialwohnungen eine Alternative darstellen (26, 27). In Europa schwankt der Anteil der Sozialwohnungen zwischen nicht einmal 2% (Estland, Griechenland und Spanien) und 35% (Niederlande) der gesamten auf dem Wohnungsmarkt verfügbaren Wohnungen (28). Die Nachfrage nach Sozialwohnungen ist im Allgemeinen viel höher als das Angebot (26). Sozialwohnungen sind jedoch, falls überhaupt vorhanden, häu g nur unzureichend rollstuhlgängig. Selbst bei einem bestehenden Kontingent für Menschen mit Behinderungen, wie es in El Salvador, Indien und ailand der Fall ist, besteht weiterhin Wohnungsknappheit (19, 20). Paradoxerweise werden Sozialwohnungen o von nicht-behinderten Personen bewohnt: In England wurden lediglich 22% der rollstuhlgängigen Wohnungen an Haushalte mit einem Rollstuhlfahrer vermietet (25).
Personenbeförderung Zugang zu den ö entlichen Verkehrsmitteln ist notwendig, um an Bildung, Arbeit und sozialen Aktivitäten außerhalb des eigenen Zuhauses teilhaben zu können. Ö entliche Verkehrsmittel sind für Menschen mit QSL o nicht zugänglich (6, 29). Rampen, Li e und Sicherheitsgurtsysteme sind o mals nicht vorhanden, werden nur dürftig instandgehalten oder sind nicht sicher (30),
Kapitel 7
Zugängliche Umwelten für Querschnittgelähmte
Auch kommt es häu g vor, dass Fahrer mit der Anwendung der verfügbaren Zugänglichkeitshilfen nicht vertraut sind (31). Bei festgelegten Buslinien und Bahnsystemen kommt es vor, dass sich der Zielort nicht in der Nähe der Bus- oder Bahnhaltestelle be ndet (30). Personenbeförderungssysteme, die auf Anfrage betrieben werden, wie z. B. barrierefreie Taxis, verlangen möglicherweise, dass man mehrere Tage vorher bucht, wodurch die Flexibilität eingeschränkt wird (30). Ein eigenes Auto kann als Alternative in Frage kommen, wenn genügend Ressourcen vorhanden sind ( nanzieller und technischer Art), da die Kosten für die Modi zierung von Fahrtauglichkeitsprüfungen und der Fahrzeuganpassung untragbar hoch sein können. Flughäfen und Fluggesellscha en sollten über Vorrichtungen verfügen, die es Querschnittgelähmten ermöglichen zu iegen. Die Toiletten sind in Flugzeugen jedoch o nicht zugänglich und in manchen Fällen ist es vorgeschrieben, dass Personen, die sich nicht selbständig fortbewegen können, nicht alleine reisen dürfen (32). Diesen praktischen Problemen liegen Systemmängel zugrunde. Eine Unterbrechung der „Reisekette“ (d. h. wenn ein Teil der Reiseroute unzugänglich ist) kann bedeuten, dass Rollstuhlfahrer ihr Reiseziel nicht erreichen können (33). Selbst wenn es Gesetze gibt, die explizit Mobilität und Zugänglichkeit für ö entliche Verkehrsmittel verlangen, werden diese o nicht rechtlich durchgesetzt. Dies ist insbesondere in Entwicklungsländern der Fall, weil nicht genügend Ressourcen zur Durchsetzung vorhanden sind (34). Es kann vorkommen, dass Taxiunternehmen Bestimmungen unterliegen, die verlangen, dass neu angescha e Minibusse barrierefrei sind. In diesen Fällen kann dies von den Unternehmern umgangen werden, indem sie lediglich gebrauchte Minibusse kaufen (35). Da barrierefreie Taxis und Kleinbusse für Paratransit-/Spezialtransportdienste teuer in der Anscha ung sind, kann es zu einer Herausforderung werden, den Dienst wirtscha lich und nachhaltig anzubieten (35 –37).
Öffentliche Gebäude Die Unzugänglichkeit von ö entlichen Gebäuden kann die Teilhabe von Menschen mit QSL beeinträchtigen (38, 39). Studien zeigen, dass die fünf großen Bereiche, in denen Zugänglichkeit für die Teilhabe von Rollstuhlfahrern wesentlich sind, Parken, Wege zu ö entlichen Gebäuden, Rampen, Eingänge und Toiletten sind (40, 41). Eine südafrikanische Studie hat beispielsweise ergeben, dass weniger als 10% der Krankenhäuser über eine komplett zugängliche Toilette für Menschen mit Behinderungen verfügten (42). Türen sind für Menschen mit QSL o zu schwer, um sie einfach ö nen zu können, Handgri e – welche für Menschen mit QSL, die mit Krücken gehen können wesentlich sind – sind möglicherweise nicht vorhanden und unebene Gehsteige oder Kopfsteinp aster, enge Durchgänge und steiles Gelände sowie nicht vorhandene abgeschrägte Randsteine sind alles Faktoren, die die Zugänglichkeit zu ö entlichen Gebäuden für Rollstuhlfahrer einschränken (43–45). Mangelnde Sicherheit im Bereich von Straßenkreuzungen und Gehwegen tragen zu einer hohen Verletzungsrate von Rollstuhlfahrern durch Fahrzeuge bei (46 –48). Fortschritte bei der Beseitigung von Zugänglichkeitsproblemen sind o ungleichmäßig verteilt. In manchen Städten in den USA war der Grad der Einhaltung von Rechtsvorschri en bei Gebäuden, die nach 1980 gebaut wurden, sehr hoch – in einer Stadt sogar 97% (49). In anderen Ländern wie der Türkei, den Vereinigten Arabischen Emiraten und Simbabwe liegen die Raten bei weniger als der Häl e davon und der Fortschritt in der Verbesserung der Zugänglichkeit soll Berichten zufolge sehr langsam vorangehen (50 –52). Manchmal ist die Situation verheerend: In Ibidan in Nigeria waren weniger als 18% der ö entlichen Gebäude rollstuhlgängig (53), während im thailändischen Bangkok, wie eine Studie ergab, dass nahezu kein ö entliches oder Geschä sgebäude vollständig für Rollstuhlfahrer zugänglich war (54). 175
Querschnittlähmung – Internationale Perspektiven
Wie beim Personentransport ist es auch hier nicht ausreichend, über Gesetze, politische Konzepte und Normen zu verfügen, wenn diese nicht durchgesetzt werden. In einer neueren Erhebung über 36 Länder in der Region Asien und Pazi k, verfügten 25 über Vorschriften über die Zugänglichkeit zu ö entlichen Gebäuden und zum ö entlichem Verkehrssystem, jedoch war keines dieser Gesetze und keine der Normen obligatorisch oder wurde durch Mechanismen zur Durchsetzung unterstützt (55). Eine Studie der Vereinten Nationen über 114 Länder zeigte, dass, während beinahe die Häl e über politische Konzepte für die Zugänglichkeit zu ö entlichen Gebäuden verfügten, die meisten keine ö entlichen Au lärungsprogramme durchführten, um darüber zu informieren, was Zugänglichkeit bedeutet. Viele hatten keine nanziellen Ressourcen für die Implementierung der politischen Konzepte eingeplant oder verfügten über keine zuständige Stelle, die diese verfolgen und überwachen hätte können (1). In allen Bereichen sind es unter anderem die folgenden Faktoren, die der Zugänglichkeit im Weg stehen: ■ Die Abwesenheit von Regulierungsrahmen und Zugänglichkeitsstandards; ■ Der Mangel an Durchsetzungsmechanismen; ■ Der Mangel an finanziellen Ressourcen oder Beschaffungspolitik der öffentlichen Hand mit Schwerpunkt auf Zugänglichkeit; ■ Institutionelle Beschränkungen (wie mangelnde Kooperation zwischen Behörden und zwischen dem ö entlichen und privaten Sektor oder eine unangemessene Planungskapazität); ■ Ein allgemeiner Mangel an Bewusstsein über das Bedürfnis nach und die Vorteile von Zugänglichkeit auf allen Ebenen; ■ Die Nutzer wirken nicht bei der Entwicklung und Implementierung von politischen Konzepten mit.
Barrieren abbauen Beinahe alle Barrieren, auf die Menschen mit QSL täglich in der physischen Umwelt stoßen im Personentransport und anderen Einrichtungen sowie ö entlich zugänglichen Diensten und Diensten für die Ö entlichkeit - sowohl in städtischen als auch ländlichen Gebieten, können abgebaut werden. Darüber hinaus stehen dafür innovative und wirtscha lich realisierbare und bewährte Verfahrensweisen zur Verfügung.
Übergreifende Maßnahmen Die folgenden Maßnahmen sind für alle Aspekte der umweltbezogenen Bereiche von Wohnverhältnissen, ö entlichen Verkehrsmitteln und ö entlichen Gebäuden relevant. Die Einführung von universellem Design hat das Potenzial, nicht nur Zugang für Menschen mit Behinderungen zu gewährleisten, sondern bringt auch Vorteile mit sich für ältere Menschen, Eltern und andere Personengruppen, die Schwierigkeiten mit der Mobilität in Gebäuden, im ö entlichen Verkehr und in ihrem persönlichen Umfeld haben (14, 33). Die Entwicklung von Zugänglichkeitsstandards kann Rollstuhlfahrern und damit auch Menschen mit QSL Zugang gewährleisten. Die BRK verlangt von den Vertragsstaaten, dass diese die Implementierung von Mindeststandards für ö entliche Einrichtungen entwickeln, ö entlich bekanntgeben und überwachen (1). Für Rollstuhlfahrer sollte dies den Zugang zu Gebäuden beinhalten – abgeschrägte Randsteine, sichere Straßenkreuzungen und barrierefreie Eingänge – sowie Zugänglichkeit im Gebäude selbst, insbesondere zu den Toiletten. Während das Beseitigen der größten Barrieren für Menschen im Rollstuhl einen großen Unterschied macht, sollte das Ziel stets vollständige Zugänglichkeit sein. Detailliere Normen zur Spezi kation stehen sowohl auf der nationalen als auch internationalen Ebene zur Verfügung (z. B. (41, 56)). Dies betri zunehmend Länder mit niedrigen und
176
Kapitel 7
Zugängliche Umwelten für Querschnittgelähmte
mittleren Nationaleinkommen. In Uganda beispielsweise entwickelte die National Union of the Disabled Persons of Uganda gemeinsam mit dem Ministerium für Gleichberechtigung, Arbeit und Soziale Entwicklung Zugänglichkeitsstandards (57). Standards müssen möglicherweise überarbeitet werden, um den Veränderungen in der Technologie und den Bedürfnissen gerecht werden zu können (z. B. Rollstuhldesign, zunehmende Prävalenz von Fettleibigkeit). Zugänglichkeitsstandards durchsetzen. In den USA wurden freiwillige Standards 1961 gesetzlich eingeführt. Diese stellten sich jedoch bald als unwirksam heraus, und sie wurden deshalb 1968 durch zwingend vorgeschriebene Standards ersetzt (58), welche ein Jahrzehnt später durch ein Verfahren, in dem Betro ene Beschwerden über nicht-zugängliche ö entliche Gebäude einreichen konnten, verschär wurden. Dieser Ansatz wurde weiter durch die Bestimmungen des Americans with Disabilities Act 1990 gestärkt. Gemeinden und Geschä e beziehen Zugänglichkeit nun in ihre Planungen für neue Bauprojekte mit ein, um potenzielle Beschwerden zu vermeiden. Um Standards durchsetzen zu können, wird eine verantwortliche Behörde oder zentrale Stelle benötigt, die die Einhaltung der Standards überwacht. Einbindung von Menschen mit QSL, gemeinsam mit anderen Behindertengruppen, bei der Festlegung von Prioritäten bei Investitionen zur Förderung von Zugänglichkeit sowie bei der Überwachung von Ergebnissen. Menschen mit Behinderungen sollten in die Entwicklung von Standards, die Zugangsüberprüfung und Forschung über die Standardeinhaltung (z. B. (59)), in die Zugangsüberwachung und in Kampagnen zur Erreichung von Verbesserungen einbezogen werden (60). Der Council of Canadians with Disabilities beispielsweise arbeitet seit beinahe 30 Jahren mit Städten und Provinzen zusammen zur Überwachung und Implementierung von Zugänglichkeitsstandards sowie zur Beratung bei Problemen wie Platzbedarf für die Nutzung von Gebäuden durch
Rollstuhlfahrer (61). In Lateinamerika haben Behindertenorganisationen wie Mexikos Libre Acceso und das brasilianische Center for Independent Living aktiv Kampagnen gestartet für die Zugänglichkeit von ö entlichen Verkehrsmitteln. Sie haben sich an der Entwicklung und Verbreitung von Zugangsrichtlinien beteiligt und deren Umsetzung gefördert (62). In Japan und den USA spielten Menschen mit Behinderungen eine Schlüsselrolle bei der Überwachung der Implementierung von Zugänglichkeit durch Überprüfung und durch ihre Beiträge zu Konsultationen (63). Schulung der Beteiligten über Zugänglichkeitsprobleme von Menschen mit Behinderungen. Bewusstsein und Wissen über Zugänglichkeit in der Ö entlichkeit ist ausschlaggebend. Schulungen zur Sensibilisierung für die Behindertenproblematik oder zur Problematik der Gleichberechtigung von Behinderten tragen dazu bei, dass sich die Einstellung ändert und Behinderte, die ö entliche Einrichtungen nutzen, respektvoller behandelt werden. Grundlegende technische Informationen über Bedürfnisse und Lösungen im Bereich Zugänglichkeit sind für Personen hilfreich, die politische Konzepte entwickeln und durchsetzen. Universitäts- und Fortbildungskurse für Architekten, Ingenieure und Planer sollten die Prinzipien und Praktiken von universellem Design und Zugänglichkeit standardgemäß enthalten (60). Seit der Verabschiedung des malaysischen Gesetzes für Menschen mit Behinderungen im Jahr 2008, wurden malaysische Universitäten darin bestärkt, Kurse einzuführen über „barrierefreie Architektur“ zur Förderung von Forschung, Verbreitung von Lösungen für eine verbesserte Zugänglichkeit und zur Stärkung des ö entlichen Bewusstseins. In Kolumbien verfasste die Landesuniversität ein Manual über Zugänglichkeit zur bebauten Umwelt und zu ö entlichen Verkehrsmitteln (19). Private Einrichtungen, die Anlagen und Dienste anbieten, die für die Ö entlichkeit zugänglich sind oder in deren Dienst stehen, 177
Querschnittlähmung – Internationale Perspektiven
müssen alle Aspekte der Zugänglichkeit in Bezug auf Menschen mit Behinderungen berücksichtigen. Kommerzielle Branchen, die in den Bau und die Ausstattung von Wohnhäusern involviert sind, sollten darin bestärkt werden, die Prinzipien des universellen Designs und ihr eigenes Design und ihre Entwicklungsverfahren zu implementieren. Diese Informationen sollten an politische Entscheidungsträger auf der Landesebene weitergeleitet werden (64, 65). Weiterführende Forschung über bewährte Strategien zur Verbesserung der Zugänglichkeit ist notwendig. Trotz Fachwissen im Bereich des universellen Designs gibt es immer noch Wissenslücken über Strategien, die sich bewährt haben in Bezug auf die Verbesserung der Zugänglichkeit in allen Kontexten, von Wohnhäusern bis hin zu Gemeinden. Es ist wenig darüber bekannt, wie genau die physische Umwelt sich einschränkend auf das Leben von Behinderten auswirkt und wie dies geändert werden kann, um Menschen mit Behinderungen die Partizipation zu erleichtern (6, 7, 66 – 69). Obwohl es einige bedeutende Fortschritte gab, gehört die Entwicklung eines verlässlichen und validierten Instruments zur Bewertung des Ausmaßes, in welchem die bebaute Umwelt eine Barriere für Menschen mit einer eingeschränkten Mobilität darstellt, zu den dringendsten Prioritäten (3, 68, 70 –74). Bewertung und Messung des Grades der Unzugänglichkeit (69) ist ein erster Schritt zu einem mehr evidenzbasierten Ansatz zur Entwicklungen von Standards. Evidenz ist ebenfalls notwendig, um die ökonomischen und sozialen Vorteile aufzuzeigen, die durch die Scha ung von zugänglichen Umwelten entstehen.
Private Wohngebäude Die Lösungen bei Barrieren in Wohngebäuden sollten Veränderungen bei bestehenden Häusern und Wohnung einschließen (darunter auch Sozialwohnungen) sowie den Bau von neuen zugänglichen Wohngebäuden. 178
Eine angemessene Modi kation für Menschen mit QSL bringt weitreichende soziale Vorteile mit sich. Anpassungen zu Hause ermöglichen es Menschen mit QSL aus Krankenhäusern und anderen kostenintensiven Einrichtungen zurückzukehren. Zusätzlich dazu können sie auch dazu beitragen, die Belastung für P egende zu reduzieren, Unfälle zu vermeiden, den allgemeinen Gesundheitszustand und die Funktionsfähigkeit zu verbessern, und soziale Exklusion zu vermindern (14, 75 –78). Modi kationen der häuslichen Umwelt zur Erleichterung der Funktionsfähigkeit können sehr stark variieren und sich mit der Zeit verändern. Zur Grundausstattung können Rampen, reibungsarme Bodenbeläge und abgesenkte Arbeits ächen gehören. Kostspieligere Veränderungen können Treppenli e und Aufzüge sowie eine Sprechanlage oder andere Kontrollsysteme beinhalten (77). Es werden möglicherweise Bewertungen von Interaktionen zwischen Personen und Umwelt über einen bestimmten Zeitraum hinweg benötigt, um die Funktionsfähigkeit zu Hause zu maximieren (79). Es wird empfohlen, die kulturellen Normen attraktiver Wohnkonzepte zu berücksichtigen, und institutionsähnliche Designlösungen zu vermeiden (24). Veränderungen bei bestehenden Wohngebäuden können kostengünstig sein. Eine Studie in Schweden über Menschen mit QSL hat gezeigt, dass bis zu 30% der Umzüge in P egeheime hätten im Fall einer Wohnungsanpassung vermieden werden können (80). Das gleiche Ergebnis wurde in England bestätigt (81). Es hat sich gezeigt, dass nanzielle Beihilfe für Wohnungseigentümer, Vermieter und Mieter bei der Anpassung von Wohngebäuden für Behinderte im gesamten Vereinigten Königreich kostengünstiger ist im Vergleich zu den Kosten, die entstehen, wenn Betro ene in alternative Wohnmöglichkeiten umziehen (82). In Kanada bietet das Residential Rehabilitation Assistance Program for Persons with Disabilities, das von der Canada Mortgage and Housing Corporation verwaltet wird, Hauseigentümern und Vermietern nanzielle
Kapitel 7
Zugängliche Umwelten für Querschnittgelähmte
Unterstützung, um es ihnen zu ermöglichen, ihre Häuser barrierefrei zu machen (83). Informationen sind notwendig, um die Zugänglichkeit von Wohngebäuden zu fördern. In den USA hat die Universität von Colorado detaillierte technische Pamphlete und eine Website entwickelt, die von Bauherren verwendet werden können, um sich über Platzbedarf und andere Details beim Nachrüsten von Häusern für Rollstuhlfahrer informieren zu können (84). Ressourcen, die von gemeindenahen Rehabilitationsprogrammen (CBR) in Indien zur Verfügung gestellt werden, liefern grundlegende Informationen über kostengünstige Modi kationen zu Hause und einfache Tipps zur Verbesserung der Zugänglichkeit in einkommensarmen Kontexten. Diese Programme verwenden Richtlinien zur Versorgung und Eingliederung in die Gemeinde nach einer QSL, die von der indischen Regierung und den Richtlinien der gemeindenahen Rehabilitation (CBR) der WHO entwickelt wurden (85). Kooperationen zwischen Regierung, Organisationen, die für Menschen mit Behinderung tätig sind und dem privaten Sektor (gewinnorientiert und gemeinnützig) können dazu beitragen, Wohngebäude zugänglich zu machen. Seit 1997 wirkt die National Cooperative Housing Union in Kenya als Bindeglied zwischen der Regierung, Gruppen, die für Menschen mit Behinderungen tätig sind und dem privaten Sektor. Zu den Aufgaben zählen die Identi zierung von verfügbarem Land und die Bereitstellung von technischer Unterstützung und von Darlehen, um den Bau von zugänglichen Wohngebäuden zu fördern (86). Der Wiederau au in Sri Lanka nach dem Erdbeben im Indischen Ozean und dem Tsunami im Jahr 2004 dient als weiteres Beispiel, um aufzuzeigen, wie Wohnungen für Menschen mit einem niedrigen Einkommen barrierefrei gemacht werden können, wenn verschiedene Sektoren zusammenarbeiten (vgl. Kasten 7.1). Neue Wohngebäude zugänglich zu machen ist wesentlich günstiger als bestehende nach-
zurüsten und bietet die größten Auswahlmöglichkeiten. Um den Bestand an zugänglichen Wohnungen auszuweiten, sind integrierte und koordinierte Bemühungen des ö entlichen und privaten Sektors notwendig, die Regelungen und Finanzierung, Entwicklung eines Marktes für zugängliche Wohnungen, Anreize, Koordinierung zwischen den verschiedenen Stellen, Informationen und Schutz vor Diskriminierung vereinen (87, 88). Politische Konzepte können dazu beitragen, einen Teil der neuen Wohnungen zugänglich zu machen (10, 89). Im Vereinigten Königreich entstanden aufgrund der alternden Bevölkerung Unterkün e „auf Lebenszeit“ („Lifetime Homes“), die ein breites Spektrum an Mobilitätsanforderungen für minimale Zusatzkosten anbieten (90). Ein weiterer wichtiger Aspekt für die Zugänglichkeit von Wohngebäuden, „visitability“ genannt, beinhaltet die Möglichkeit für Rollstuhlfahrer, Zugang zu Wohnungen und Häusern von Verwandten oder Freunden zu haben, die selbst in ihrer Mobilität eingeschränkt sind oder auch nicht. „Visitability“ ist dann gewährleistet, wenn es mindestens einen Eingang ohne Stufen, breite Türen und eine Toilette im Erdgeschoss gibt (91, 92). Eine Reihe von nanziellen Mechanismen kann angewendet werden, um mehr zugängliche Häuser und Wohnungen zu scha en. Diese beinhalten steuerliche Anreize und niedrig verzinste Darlehen für private Bauherren von Wohnungsbauprojekten. Dies soll einen Anreiz für sie scha en, zugängliche Wohnhäuser zu bauen – wie vom Fair Housing Act der USA aus dem Jahr 1988 und ähnlichen Gesetzen gefordert. Ebenfalls in den USA stellt das Wohnraumgesetz von 1959 Zuschüsse für gemeinnützige Organisationen zur Deckung von Kosten für den Bau, die Sanierung oder den Kauf von Immobilien bereit. Die staatliche Norwegian Housing Bank bietet im Rahmen ihres „Lifecycle Housing“- Programms ähnlich günstige Darlehen für Bauherren an, um sie darin zu bestärken, zugängliche Wohngebäude zu bauen. Eine größere Marktakzeptanz erhielt „Lifecycle Housing“ durch die 179
Querschnittlähmung – Internationale Perspektiven
Kasten 7.1. Sri Lanka erholt sich vom Erdbeben und Tsunami im Jahr 2004 im Indischen Ozean Der Tsunami im Indischen Ozean im Jahr 2004 kostete zehntausenden Menschen das Leben und zerstörte unzählige Gebäude. Der Wiederaufbau jedoch bot eine Möglichkeit, zugänglichere Umwelten zu entwickeln. Behinderte und ältere Menschen in ländlichen Gebieten Sri Lankas haben oft Schwierigkeiten, sich in ihren Häusern fortzubewegen, ganz zu schweigen von ihrer Umgebung. Menschen mit Mobilitätsproblemen sind oft auf die Hilfe anderer angewiesen, was Auswirkungen auf die Unabhängigkeit anderer Familienmitglieder hat sowie auf deren Möglichkeit, Vollzeit arbeiten zu gehen. Es gibt keine verlässlichen Daten für Sri Lanka; Jahrzehnte des Bürgerkriegs haben die Anzahl der Menschen, die Behinderung erfahren jedoch in die Höhe getrieben. Nach dem Tsunami unternahm eine kommunale Organisation, in Partnerschaft mit einer internationalen Organisation, den Wiederaufbau eines zerstörten Dorfes als barrierefreies Modelldorf. Dafür wurden ein Architekt und ein Beschäftigungstherapeut rekrutiert, die beratend in Bezug auf Zugänglichkeit mitwirkten. Es standen keine nationalen Standards oder Richtlinien über Zugänglichkeit zur Verfügung. Es wurden europäische Richtlinien verwendet, was sich als problematisch erwies aufgrund der städtischen und „europäischen“ Ausrichtung. Mit begrenzten finanziellen Ressourcen wurden 55 einfache, aber anpassbare Häuser und ein zugängliches Gemeindezentrum gemäß den Vorgaben der Regierung geschaffen. Dazu gehörte je nach Bedarf entweder die Ausstattung mit Rollstuhlrampen oder mit Stufen mit Geländern. Das Hausinnere war generell ebenerdig, die Türrahmen entsprachen einer Mindestbreite und alle Räume waren groß genug, dass man mit dem Rollstuhl darin wenden konnte. Auf beiden Seiten des Hauses gab es ein ebenerdiges Bad mit Toilette. Wenn notwendig, wurden Geländer und Toilettenstühle installiert, die auch als Duschstühle verwendet werden konnten. Schalter, Handgriffe und Armaturen wurden alle innerhalb einer gewissen Reichweite installiert. Vor dem Bau stieß die neue Form des Wohnungsbaus bei den älteren und behinderten Dorfbewohnern und ihren Betreuern auf Ablehnung, insbesondere die angegliederte Toilette. Danach waren sie jedoch erleichtert darüber, bessere Einrichtungen zur Verfügung zu haben. Menschen ohne Mobilitätseinschränkungen verwendeten das angegliederte Badezimmer oft als weiteres Zimmer und bauten eine alternative Waschmöglichkeit im Freien. Das Gemeindezentrum mit Zugangsrampen und zugänglichen Toiletten ermöglichte es Menschen mit Behinderungen, weniger mobilen Menschen und Pflegenden, die normalerweise nicht in soziale Aktivitäten involviert sind, an Veranstaltungen der Gemeinde teilzuhaben. Die folgenden wichtigen Lektionen wurden gelernt:
■ Barrierefreies Design muss die kulturellen und wirtschaftlichen Gegebenheiten im Detail berücksichtigen. ■ Richtlinien, die für Länder mit einem hohen Nationaleinkommen entwickelt wurden, sind für Länder mit einem niedrigen Nationaleinkommen möglicherweise nicht angemessen, insbesondere für ländliche Gegenden. Es können bessere Lösungen gefunden werden, die die Bedingungen vor Ort berücksichtigen. ■ Während der Bauphase war eine strikte Beaufsichtigung notwendig, da die Bauherren mit den Hauptelementen des Designs nicht vertraut waren.
Kombination von Zugänglichkeit mit qualitativ hochwertigem Design und durch die Förderung von Partnerscha en zwischen Architekten, Behindertengruppen und Bauherren (80, 89). Im Mai 2004 hatte das Programm in Oslo 260.873 Wohneinheiten gescha en, von denen 85% von Senioren und 15% von Nicht-Senioren mit Behinderungen bewohnt wurden (93). Als sich später herausstellte, dass Gemeindegruppen, die daran interessiert waren, Bauherren für zugängliche 180
Bauprojekte zu beau ragen, nicht über genügend nanzielle Mittel verfügten, wurde in den USA 2007 der Disability Opportunity Fund gegründet, um die gesetzlichen Anreize zu ergänzen (88). Durch weitere Mechanismen – wie z. B. die Kennzeichnung von Häusern als “zugänglich” oder das Verleihen von Auszeichnungen – kann der Bau von adäquaten Wohnungen und Häusern gefördert werden. Das Kennzeichnen von Häusern als „barrierefrei“ kann zur Bekämpfung
Kapitel 7
Zugängliche Umwelten für Querschnittgelähmte
des Stigmas beitragen, das „speziellen“ Wohnungen o anha et und den Bedarf der Verbraucher stimulieren. In einem von der Gemeinde geleiteten Wohnungsbauprojekt in British Columbia in Kanada wurde beispielsweise das Konzept „Flex Housing“ verwendet, um rollstuhlgängige Häuser in der Gemeinde von Seabird Island zu konstruieren und um den Bedarf danach zu steigern (94). Das „Flex-Housing“ Design ermöglicht es den Bewohnern, die Übergänge zwischen den Räumen und die Größe der Räume anzupassen, um sie besser zugänglich zu machen. In Australien und dem Vereinigten Königreich wurden nationale Auszeichnungen an Designer und Architekten vergeben sowie Auszeichnungen für Gemeindedienste, um den Bau von barrierefreien Wohnräumen zu fördern (89). Die Zugänglichkeit von Sozialwohnungen zu verbessern ist wichtig für Menschen mit QSL, die über begrenzte nanzielle Mittel verfügen. Die komplexe Finanzierung und Koordination, die zur Scha ung von hochwertigen Sozialwohnungen oder bezuschussten Wohnungen notwendig sind, stellen Herausforderungen dar, selbst für die wohlhabendsten Länder (26, 27). Viele innovative Ansätze, um Sozialwohnungen zugänglich zu machen haben sich in Ländern in ganz Europa während der letzten 20 Jahre entwickelt (95 –97), o mals aufgrund der zunehmend alternden Bevölkerung (81). Zu diesen Ansätzen gehören folgende Beispiele: ■ In Dänemark konstruierte eine genossenschaftliche Wohnungsbaugesellschaft Wohnblöcke für Menschen mit Behinderungen, die durch Gemeinschaftsräume miteinander verbunden wurden. Die dänische Regierung finanzierte die Baukosten, während die Einrichtungen speziell für Behinderte privat finanziert wurden und die kommunalen Behörden für die Pflegekosten aufkamen. Der Anteil an Unterkünften für Menschen mit besonderen Bedürfnissen („Special-needs housing“; für Menschen mit Behinderungen, ältere Menschen und große Familien) beträgt in Dänemark 50% (98).
■
■
In Schweden wurde ein Wohnungsbauprojekt auf einem ehemaligem Industriegelände realisiert, das von einer privaten Firma zur Verfügung gestellt wurde, die mit Stadtplanern zusammenarbeitete, um zugängliche Genossenschaftswohnungen mit einem Gemeindezentrum, einem Kindergarten, einem Jugendzentrum und einem Gesundheitszentrum zu konzipieren und zu bauen (96). In den Niederlanden ist seit 1997 vorgeschrieben, dass alle neuen Häuser im privaten und sozialen Wohnungsbausektor gemäß den Standards für anpassbare Wohnungen konzipiert werden müssen, wie von der nationalen Bauordnung vorgeschrieben wird. Darunter fallen Probleme wie Türschwellen, Platzanforderungen für Rollstühle, Breite der Türrahmen und die Höhe von Steckdosen und Arbeitsflächen.
Die Klu zwischen Verbrauchernachfrage und Versorgung durch die Regierung kann durch die Bereitstellung von Informationen verkleinert werden. Im Vereinigten Königreich wurde das London Accessible Housing Register speziell dafür erstellt, um Eigentümer darin zu bestärken, ihre Häuser besser zugänglich zu machen (91). Das Verzeichnis dient nicht nur als Informationsquelle für Menschen, die eine barrierefreie Wohnung benötigen, sondern bestimmt auch Zugänglichkeitskriterien durch die Kategorisierung verfügbarer zugänglicher Sozialwohnungen gemäß den detaillierten Normen für Rollstuhlzugänglichkeit der gesamten Wohnung (99). Verzeichnisse für zugängliche Wohnungen wurden auch von Kommunalverwaltungen und Behindertenorganisationen in Teilen Kanadas und Australiens erstellt (100). Ähnliche Ansätze wurden erfolgreich in Ruanda umgesetzt als Teil eines umfangreichen Programms zur Bereitstellung von zugänglichen Wohnungen für ehemalige Kombattanten und Zivilpersonen, die seit dem Völkermord von 1994 körperlich behindert sind (101). Es ist wichtig, dass Menschen mit 181
Querschnittlähmung – Internationale Perspektiven
Behinderungen nicht aufgrund ihrer Wohnmöglichkeiten isoliert leben müssen. Aus diesem Grund werden universelles Design und die Eingliederung von zugänglichen Wohnungen in gemischten Wohngegenden als Lösungsansätze bevorzugt.
Öffentliche Verkehrsmittel Barrierefreie ö entliche Verkehrsmittel gehören zu den wichtigsten fördernden Umweltfaktoren für Behinderte (102). Verkehrspolitik sollte Bestandteil der nationalen Strategie für Menschen mit Behinderungen sein. Der Zugang zu ö entlichen Verkehrsmitteln kann am besten mit umfassenden politischen Maßnahmen verbessert werden, die von einer verantwortlichen Behörde unter Beteiligung von Menschen mit Behinderungen kontrolliert werden. Es ist wirtscha licher und kostengünstiger, gleich beim Design von Verkehrsmitteln darauf zu achten, dass sie barrierefrei sind, anstatt später nachzurüsten (8). Die Herausforderungen liegen jedoch nicht nur in der Struktur und Finanzierung, sondern sind auch o psychologischer Natur – wie beispielsweise Angst um die eigene Sicherheit (34, 36, 62, 103). Mögliche Strategien zur Förderung von barrierefreien Verkehrsmitteln werden unten beschrieben.
zunehmend weniger Barrieren auf (107) und Schnellverkehrssysteme in Städten wie Calgary in Kanada, Peking in China und Dar es Salaam in der Vereinigten Republik Tansania folgen den Grundsätzen des universellen Designs (104, 108–110). Ziel sollte es vielmehr sein, Lösungen zu implementieren, die das größtmögliche Spektrum von Mobilitätsschwierigkeiten berücksichtigen, anstatt auf Ad-hoc-Maßnahmen wie Klapprampen oder tragbare Hebevorrichtungen zurückzugreifen, deren Verwendung von der Verfügbarkeit des Personals abhängig ist (111). Der Bedarf an barrierefreien Transportmitteln für Rollstuhlfahrer (33, 112), hat zu bedarfsgesteuerten Lösungen geführt, wie beispielsweise Paratransit-Dienste, die es sowohl in Ländern mit hohen als auch in Ländern mit niedrigen Nationaleinkommen gibt (113, 114). Diese Sonderfahrdienste (SFDs) können jedoch als eine Art Sonderbehandlung für Privilegierte wahrgenommen werden, oder aber auch als zu teuer und unsicher empfunden werden (35, 36). Um diese Wahrnehmungen zu bekämpfen, wurde 2001 das schwedische Projekt Brukslinjen ins Leben gerufen, um ländliche und städtische Gemeinden zusammenzubringen, um die bestehenden ö entlichen Verkehrsmittel in vollem Umfang mit den exiblen SFDs zu vernetzen – darunter Schulbusse und anderer regelmäßiger Linienverkehr. Das Brukslinjen Projekt wurde landesweit eingeführt (35, 37). Was SFDs anbelangt, so ist Schweden weitgehend auf Taxis angewiesen (35). Eine mehr technologieorientierte Lösung wurde mit RegioTaxi KAN in den Niederlanden und der FLIPPER Initiative in Bologna in Italien eingeführt. Bei beiden Systemen wird ein bedarfsorientiertes telemetrisches Datenübertragungssystem verwendet, bei welchem Koordinationszentralen mit Hilfe von Computerbuchungen und automatischen Systemen zur Fahrzeuglokalisierung arbeiten. Diese Informationen werden dann durch eine So ware zur Routenoptimierung ausgewertet,
Spezielle Personenbeförderungsdienste
Die Sanierung eines bestehenden ö entlichen Verkehrssystems bringt technische und nanzielle Herausforderungen mit sich (104). Dazu gehört beispielsweise den Platzbedarf für Rollstühle zu gewährleisten, Höhenunterschiede zwischen Straße und Verkehrsmittel zu überwinden und die Lücke zwischen Fahrzeug und Bahnsteig zu minimieren (105, 106). Mit Absenksystemen für Busse, automatischen Hebeanlagen, Aufzügen und Rampen können Verkehrsmittel barrierefrei gemacht werden. Straßenbahnen in Großstädten weltweit weisen 182
Linienbusse, Straßenbahn, U-Bahn und Bahnsysteme
Kapitel 7
Zugängliche Umwelten für Querschnittgelähmte
welche das Paratransit System mit den ö entlichen Verkehrsmitteln, privaten Taxianbietern und anderen Diensten verbindet. Mit einem einzigen Buchungsbeleg kann eine Route gebucht werden, um dann auf eine Reihe von möglichen Verbindungen zwischen den Beförderungsmöglichkeiten verwiesen zu werden (115). Manche Großstädte bevorzugen zugängliche private Taxiunternehmen. Die Taxi otte in London im Vereinigten Königreich beispielsweise ist zu 75% barrierefrei (ca. 24.000 Fahrzeuge) (35). Während die Kosten für barrierefreie Taxis sowie die notwendige Infrastruktur für ein koordiniertes Netzwerk möglicherweise die nanziellen Mittel übersteigen, können günstigere Möglichkeiten wie Rickshas, Kleinbusse und Fahrradtaxis für wenig Geld für Menschen mit Behinderungen barrierefrei gemacht werden (62). In manchen Kontexten sowie für Menschen, die sich vom und in den Rollstuhl transferieren können, könnten diese Beförderungsmöglichkeiten eine gute Alternative darstellen. Die Minibus-Taxis in Südafrika, die chapa 100s im Mosambik und die micros in Mexiko bieten jeweils gute barrierefreie Beförderungsmöglichkeiten aufgrund ihrer geringen Größe und weil sie überall verfügbar sind (62).
Taxis, Kleinbusse, Fahrradrickshas
oder Zugänglichkeitsanforderungen zu missachten (116). Eine verstärkte Mobilisierung von Verbrauchern in Zusammenarbeit mit der Regierung hat in Kapstadt und Johannesburg in Südafrika Erfolge bei der Verbesserung von barrierefreien Verkehrsmitteln des Integrated Rapid Transit-Systems gezeigt (111). Erfolgreich war auch das Rapid Transit Project in Dar es Salaam in der Vereinigten Republik Tansania, welches die privaten Paratransit Betreiber vollständig in das Netzwerk der ö entlichen Verkehrsmittel integriert (113). Bereits in den 1970er Jahren war Brasilien im Bereich der Einführung von Busverkehrssystemen führend, bei denen Busse während den Hauptverkehrszeiten Vorfahrt haben; aufgrund von wirtscha lichen Beschränkungen jedoch, wurde es für Städte immer schwieriger, die ö entliche Infrastruktur zu nanzieren. Anstatt jedoch weniger barrierefreie Dienste zur Verfügung zu stellen, haben sich Städte in Brasilien für ö entlich-private Partnerscha en zur Entwicklung von barrierefreien Busschnellverkehrssystemen entschieden (117). Angespornt wurden sie dabei durch Proteste von Gruppen zur Vertretung von Senioren und Behinderten.
Bildung
Öffentlich-private Kooperationen
Viele Beförderungssysteme sind auf ö entlich-private Kooperationen angewiesen. Wenn der ö entliche Sektor mit Kürzungen konfrontiert wird und der reguläre ö entliche Verkehr immer mehr abnimmt, wird die entstehende Lücke o von privaten Taxis, Minibussen oder anderen Fahrzeugdiensten geschlossen, die um ihren Marktanteil kämpfen. Eine Fallstudie über Verkehrsmittel in Georgien, Ghana und Kasachstan wies darauf hin, dass private Personenbeförderungsanbieter die ö entlichen Verkehrsmittel o verdrängen wenn sie auf den Markt kommen. Wenn sie sich dann erst einmal etabliert haben, neigen sie dazu, Bestimmungen zu umgehen
Der Erfolg sämtlicher Strategien hängt von der Zusammenarbeit von kompetentem und gut geschultem Transportpersonal ab. Sicherheitsrückhaltesysteme in Bussen sind o wenig hilfreich, wenn der Busfahrer nicht in deren Verwendung geschult wurde. Taxifahrer verfügen möglicherweise über barrierefreie Fahrzeuge, vermeiden jedoch dennoch den Transport von Rollstuhlfahrern, weil sie deren Beförderung als lästig emp nden. Selbst Manager und politische Entscheidungsträger verstehen nicht immer, wie wichtig Zugänglichkeit ist oder sie sehen keinen Bedarf an wissenscha lich recherchierten Richtlinien für kostengünstige Lösungen für eine bessere Zugänglichkeit (108).
183
Querschnittlähmung – Internationale Perspektiven
Private Verkehrsmittel
Privatanbieter und angepasste Fahrzeuge sind für viele Menschen in Ländern mit einem hohen Nationaleinkommen eine Möglichkeit zur Steigerung der Unabhängigkeit, der gesellscha lichen Teilhabe und somit der Lebenszufriedenheit (118–120). Artikel 20 der BRK über persönliche Mobilität schreibt Zugang zu Mobilitätshilfen und –geräten zur Förderung von Unabhängigkeit vor und verlangt nach Schulungen und Fachpersonal. Für diejenigen, die sich in ein Auto transferieren können und über einen Rollstuhl verfügen, der verstaut werden kann, können die Kosten für modi zierte Steuerungskontrollen für ein Auto mit Automatikgetriebe verhältnismäßig niedrig sein. In Ländern wie China, Malaysia, ailand und Vietnam sind angepasste Motorräder eine beliebte günstigere Alternative für manche Menschen mit einer Paraplegie (121). Für Personen, die sich nicht in ein Auto transferieren können, sind rollstuhlgängige Fahrzeuge eine kostspieligere Lösung, insbesondere für Tetraplegiker (122), die außerdem auf die Hilfe eines Freundes oder Helfers angewiesen sind, um autofahren zu können (30). Nichtsdestotrotz werden bedeutende Innovationen im Bereich der politischen Konzepte über unterstützende Technologie in manchen Ländern erreicht, die mögliche Lösungen wie Subventionen oder Zuschüsse anbieten (123–126). In Finnland wird der Kauf von angepassten Fahrzeugen beispielsweise durch eine Steuerermäßigungen unterstützt.
Öffentliche Gebäude Erfolg bei der Erreichung von Zugänglichkeit beruht nicht nur auf einem Faktor: Durchsetzbare Rechte und gute politische Konzepte müssen mit Führungsstärke sowie Zusammenarbeit zwischen den Sektoren und einer Verp ichtung zur schrittweisen Umsetzung von angemessenen Zugänglichkeitstandards einhergehen. Strukturelle und politische Maßnahmen wie Gesetzgebung, Regulierungen, Gebäudestan184
dards und Richtlinien werden benötigt, um die komplexen Herausforderungen beim Abbau von Barrieren in ö entlichen Gebäuden, auf ö entlichen Plätzen und privaten Einrichtungen wie Einkaufzentren, Läden, Restaurants und Hotels zu meistern. Politischer Wille und institutionelle Unterstützung sind jedoch ebenfalls notwendig, um diese Komponenten zusammenzuführen. Der wichtigste Punkt ist dabei, dass diese Maßnahmen durchsetzbar sein müssen. Erhebungen zeigen, dass selbst wenn Gesetze und Richtlinien zur Regelung von Zugänglichkeit vorhanden sind, sie o nicht eingehalten werden wenn sie optional sind (19–21). In Ländern wie Australien, Kanada, Deutschland, Indien und Neuseeland, dem Vereinigten Königreich und den USA, in denen Zugänglichkeitsanforderungen direkt mit Antidiskriminierungsgesetzen und entsprechenden Beschwerdevorkehrungen verbunden sind, kann eine erfolgreiche Anfechtung durch eine Einzelperson aufgrund nicht vorhandener Zugänglichkeit zu Geldstrafen oder gerichtlichen Anordnungen führen. Ein junger Rollstuhlfahrer im Vereinigten Königreich erhielt 2007 eine bedeutende Entschädigung im Verfahren gegen eine größere Bank, weil die Geschä sräume nicht rollstuhlgängig waren (127). Obwohl solche Erfolge wichtig sind, hat die Verwendung von Antidiskriminierungsgesetzen ihre Nachteile. Eine Beschwerde zu erheben ist kostspielig und selbst wenn sie erfolgreich ist, führen erfolgreiche Beschwerden/Klagen nicht automatisch zu Änderungen des Systems. Wenn Antidiskriminierungsgesetze als Verteidigung ‚unbillige Härte‘ für angemessene Vorkehrungen anerkennt, wird das Menschenrecht „Zugänglichkeit“ zu einer Frage der Wirtscha lichkeit, gegen die schlechter argumentiert werden kann, und die weniger eindeutig ist. Jede zwangsweise durchgeführte Vollstreckungsstrategie kann zu widersinnigen Ergebnissen wie einer teilweisen Einhaltung führen. In diesem Fall wird die einfachste und am deutlichsten sichtbare Vorkehrung getro en – eine
Kapitel 7
Zugängliche Umwelten für Querschnittgelähmte
Rampe zum Haupteingang eines Einkaufszentrums beispielsweise – weiter jedoch nichts. Dies führt dazu, dass der Rollstuhlfahrer sich hil os im Inneren des Gebäudes be ndet (128). Jegliche zugangsverbessernden Vorkehrungen werden natürlich begrüßt; teure und symbolische Vorkehrungen können zur Erschöpfung des zugewiesenen Budgets führen und dennoch keinen umfassenden Abbau von Barrieren erzielen. Lösungen für eine verbesserte Zugänglichkeit müssen also praktisch und benutzerfreundlich und nicht etwa demütigend sein. Eine Studie zeigte, dass die ausgeschriebenen „rollstuhlgängigen Aufzüge“ allesamt Lastenaufzüge waren – wovon manche zum Mülltransport vorgesehen waren – und sich in nicht-zugänglichen Teilen des Gebäudes befanden (49). Eine e zientere Vorgehensweise, die allerdings nur begrenzt Anwendung ndet, ist das deutsche Gaststättengesetz, in dem Zugänglichkeit als Bedingung gilt, um eine Konzession zu erhalten. Angesichts der Schwierigkeiten mit dem Umsetzungsansatz haben es einige Länder mit Anreizen versucht: ■ Die Kampagne Warsaw without Barriers in Polen vergibt Preise für die innovativste und effizienteste Zugänglichkeitslösung im Stadtzentrum. ■ Das Projekt Map of Accessible Sofia in Bulgarien hob Läden und Einrichtungen hervor, die barrierefrei waren und machte Werbung dafür. ■ Ein wesentlicher Bestandteil von Irlands National Disability Strategy in Bezug auf öffentliche Zugänglichkeit ist es, die Entwickler und Bauherren davon zu überzeugen, dass barrierefreie Gebäude eine gute Investition für sie darstellen, indem sie den Marktwert erhöhen, die potenzielle Nutzung ausbauen, ein besseres Image fördern und eine unkomplizierte Verwendung sowie die Sicherheit verbessern (56) (vgl. Kasten 7.2). ■ In der kanadischen Provinz Ontario organisierte die Association of Municipal Managers als Reaktion auf die Bestimmungen
des Accessibility for Ontarians with Disabilities Act von 2005 ein Toolkit in Form einer Website für Zugänglichkeit innerhalb der Gemeinde, das innovative Möglichkeiten aufzeigte, durch welche den Richtlinien des Gesetzes entsprochen werden kann. Die Website schuf eine wettbewerbsartige Atmosphäre zwischen den Gemeinden bei der Identifizierung von umsetzbaren Möglichkeiten zur barrierefreien Gestaltung von Gebäuden und öffentlichen Plätzen (129). Ein Haupt-Erfolgsindikator für sämtliche Programme der ö entlichen Zugänglichkeit ist wie umfassend und ganzheitlich diese sind. Ein Zugänglichkeitsprogramm für ö entliche Gebäude und Plätze und private Gebäude mit Zugang für die Ö entlichkeit sollten vollständige Zugänglichkeit in machbaren Teilschritten anstreben und die „Alles-oder-Nichts“-Falle vermeiden, in der wesentliche erste Verbesserungen aufgeschoben werden, weil eine vollständige Zugänglichkeit nicht sofort erreicht werden kann. Alle Komponenten dieser Strategie – technische Leitlinien, Fachwissen und Expertise, ein gesetzgebender und politischer Rahmen, ö entliches Bewusstsein, politischer Wille und wirtscha liche Ressourcen – müssen zu einem einzigen Zugänglichkeitsprogramm vereint werden mit einer benannten zentralen Anlaufstelle. Die Strategie sollte Finanzierungen zur Scha ung von Zugänglichkeit kennzeichnen und sicherstellen, dass professionelle Bildungseinrichtungen (für Architektur, Stadtplanung, Design und damit verbundene Berufe) darin unterstützt werden, Zugänglichkeit in die Lehrpläne aufzunehmen (14, 104). Es sollte eine formelle Kooperation zwischen Menschen mit Behinderungen, relevanten Fachkrä en (Rehabilitationsfachkrä e, Politiker, Entwickler, Ingenieure, Architekten und Planer) und anderen Beteiligten geben, um eine fortwährende Teilhabe am Zugänglichkeitsprogramm zu gewährleisten.
185
Querschnittlähmung – Internationale Perspektiven
Kasten 7.2. Extern Überprüfen ob:
Prüfen ob Zugänglichkeit aufrecht erhalten wurde
■ gekennzeichnete Parkplätze für behinderte Autofahrer zur Verfügung stehen; ■ Rampen und interne Verbindungswege nicht von parkenden Fahrrädern und anderen Hindernissen blockiert werden;
■ interne Verbindungswege und Fluchtwege von Gebäuden zu sicheren Plätzen eine ebene Oberfläche ohne Hindernisse haben und gut beleuchtet sind;
■ Bereiche, die gewartet oder repariert werden angemessen abgesichert sind und alternative Wege gegebenenfalls zur Verfügung stehen und ausgeschildert sind;
■ die Wegoberflächen instand gehalten wurden, sauber, nicht mit Kieselsteinen, Gittern, Matsch, Eis, Schnee oder Moos bedeckt sind;
■ Akkus von Plattformliften immer geladen sind; ■ Evakuierungshilfsmittel vorhanden sind. Eingänge Überprüfen ob:
■ der Wendeplatz auf Rampen keine Hindernisse enthält; ■ der Zugang zu Klingeln, Briefkästen und Türgriffen nicht behindert wird; ■ Türen einfach zu öffnen und die wirkende Kraft von Schließmechanismen so eingestellt ist, dass sie die Türen gerade so schließen;
■ Eingangsbereiche keine permanenten oder vorübergehenden Hindernisse aufweisen. Horizontale Verbindungswege im Gebäude Überprüfen ob:
■ Türmatten vertieft und, wie auch Teppiche, sicher befestigt sind, um Stolpern zu vermeiden; ■ ob Anti-Rutsch Bodenbeläge instand gehalten wurden, verschüttete Flüssigkeiten sofort und mit angemessenen Reinigungs- und Putzmitteln entfernt wurden; abgenutzte Bodenbeläge ersetzt wurden; die künstliche Beleuchtung angemessen hell ist; Türen einfach zu öffnen und Schließmechanismen so eingestellt sind, dass sie die Türen gerade so schließen; Türen geschlossen gehalten werden, wenn sie nicht in Gebrauch sind; der Platz für Rollstühle in Wartezimmern und anderswo hindernisfrei gehalten wird; Verbindungswege hindernisfrei sind (z. B. Werkzeugkästen, Aktenkisten, Verkaufsautomaten, Kopiergeräte); Schutzorte hindernisfrei sind; angemessene Kopffreiheit im ganzen Gebäude gewährleistet ist ohne Schleppkabel auf dem Boden oder unterhalb von 220cm Höhe; ■ die Zugangswege zu Ein- und Ausgängen von Aufzügen und Treppen hindernisfrei sind.
■ ■ ■ ■ ■ ■ ■ ■
Quelle (56).
Die Tragödie einer Naturkatastrophe kann ebenfalls eine Möglichkeit des Wiederau aus unter Berücksichtigung von Zugänglichkeitskritierien darstellen. In Neuseeland wurde im 186
Juli 2011 das Projekt Accessible Christchurch gestartet, um die Bedürfnisse von behinderten Menschen zu fördern, und um die Verwendung von lebenslang geltenden Designstandards im
Kapitel 7
Zugängliche Umwelten für Querschnittgelähmte
Wiederau au nach dem verheerenden Erdbeben in jenem Jahr zu gewährleisten. Nach dem Erdbeben im Indischen Ozean und dem Tsunami im Jahr 2004 wurden Unterkün e in Sri Lanka so wiederaufgebaut, dass sie besser zugänglich waren (vgl. Kasten 7.1). Auf diese Weise können selbst Regierungen, die wirtscha lichen Einschränkungen unterliegen, maßgebliche Schritte in Richtung Zugänglichkeit machen, wie auch in Haiti gezeigt wurde (130).
■
Schlussfolgerung und Empfehlungen Die physische Umwelt, von der Menschen mit QSL umgeben sind, kann ihre Teilhabe und Inklusion in das soziale, wirtscha liche, politische oder kulturelle Leben entweder erleichtern oder erschweren. Es gibt ein breites Spektrum von Barrieren und die meisten Querschnittgelähmten erfahren zumindest manche dieser Barrieren tagtäglich in Bezug auf die Teilhabe (3, 6). Der Abbau von Barrieren verbessert den Alltag einer Person mit Querschnittlähmung erheblich. Zugleich ist Zugänglichkeit auch für andere von Nutzen, wie beispielsweise ältere Menschen, Eltern mit Kinderwägen/Kindersportwägen und Menschen mit anderen Mobilitätseinschränkungen (dauerha oder zeitweise). Von Zugänglichkeit pro tiert jeder. Adäquate Zugänglichkeitsrichtlinien und Gesetze kombiniert mit einer e zienten Durchsetzung sind für die Scha ung einer „Kultur der Zugänglichkeit“ wesentlich. Die folgenden Empfehlungen heben Maßnahmen hervor, die bei der Scha ung dieser Kultur helfen können.
■
■
■
Übergreifende Empfehlungen ■ Universelles Design einführen als konzeptioneller Ansatz für die Gestaltung von Gebäuden, öffentlichen Verkehrssystemen sowie Häusern und Wohnungen, die für Menschen mit QSL zugänglich sind und
Bewusstsein über Zugänglichkeit auf allen Ebenen schaffen. Örtlich angemessene Zugänglichkeitsstandards entwickeln, die auf lokale kulturelle Aspekte, Gegebenheiten und Bedürfnisse ausgerichtet sind. Anschließend Zugänglichkeit als Kriterium in die Planung und Genehmigung von Häusern, bebauten Umgebungen und öffentlichen Verkehrsmitteln einschließen und die Einhaltung von Zugänglichkeitsgesetzen überwachen, um zu gewährleisten, dass universale Zugangsstandards eingehalten werden. Organisationen für Menschen mit QSL sowie weitere Behindertenorganisationen direkt in Bemühungen für eine bessere Zugänglichkeit einbeziehen, darunter auch das Design und die Entwicklung von Richtlinien, Produkten und Dienstleistungen, die Bewertung der Bedürfnisse der Nutzer und die Überwachung des Fortschritts. Schrittweise Verbesserungen in der Umwelt erzielen, angefangen bei grundlegenden Hindernissen und langsam Standards und Ziele anheben, sobald Ressourcen dafür zur Verfügung stehen. Mit unverzichtbaren öffentlichen Gebäuden wie Krankenhäusern, Regierungsgebäuden und Schulen beginnen. In Kontexten mit beschränkten Ressourcen ist eine strategische Planung notwendig, um Prioritäten zu setzen und eine Reihe von immer weiterreichenderen Zielen abzustecken. Dies soll aufgrund von Pilotstudien geschehen, um durch Erfahrung zu lernen, welche Maßnahmen erfolgversprechend sind und in welchem Zusammenhang. Das Bewusstsein steigern, um Fehlwahrnehmungen und Vorurteile in Bezug auf QSL und andere Behinderungen zu reduzieren. Sicherstellen, dass das Personal von öffentlichen und privaten Dienstanbietern darin geschult ist, Zugang zu gewährleisten und behinderte Kunden mit Respekt und Einfühlungsvermögen zu behandeln.
187
Querschnittlähmung – Internationale Perspektiven
Wohngebäude ■ Informationen bereitstellen über Wirtschaftlichkeit und Umsetzbarkeit von Wohnungsanpassungen und –aufrüstungen sowie die Erschwinglichkeit durch Zuschüsse und Steuerermäßigungen verbessern. Öffentlich-private Anreize bereitstellen, um die Anzahl an zugänglichen Wohngebäuden zu erhöhen. Verbände für Menschen mit QSL, örtliche Behörden, Wohnungsbaugenossenschaften und andere Beteiligte darin bestärken, mit Entwicklern zusammenzuarbeiten, um zugängliche Wohnungen zu konzipieren und zu bauen. Ein Register für barrierefreies Wohnen erstellen, um es Menschen mit QSL zu ermöglichen, auf eine einfache Art und Weise adäquate zugängliche Wohnungen zu finden.
■
■
unter Einbeziehung von Personen mit Mobilitäts- und anderen Zugangsbedürfnissen. Vollständige Kontinuität der Zugänglichkeit über die gesamte Beförderungskette hinweg anstreben durch Einbeziehung von Verbesserungen von Straßenbelägen und Straßen, Kreuzungen und Zugängen zu Bussen, Straßenbahnen, Bahnverkehr und anderen Fahrzeugen.
Öffentliche Gebäude und Plätze ■ Die Einhaltung von Standards für neue oder renovierte öffentliche Gebäude und Plätze durch eine Kombination von gesetzlichen Regelungen, Geldstrafen und Zulassungsvoraussetzungen in Verbindung mit öffentlicher Bewusstseinsbildung. Maximale Verbindungswege für unverzichtbare öffentliche Gebäude und Einrichtungen anstreben, gemäß den örtlichen Bestimmungen. Einen Prüfungsvorgang etablieren und eine führende Regierungsbehörde benennen, die für die Implementierung von Zugänglichkeitsprogrammen verantwortlich ist.
■
■
Öffentliche Verkehrsmittel ■ Zugänglichkeit von öffentlichen Verkehrsmitteln zu einem wesentlichen Bestandteil der allgemeinen Verkehrspolitik machen, überwacht von einer zuständigen Behörde,
■
Quellen 1. 2. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). Fougeyrollas P. Documenting environmental factors for preventing the handicap creation process: Quebec contributions relating to ICIDH and social participation of people with functional differences. Disability and Rehabilitation, 1995, 17:145153. doi: http://dx.doi.org/10.3109/09638289509166709 PMID:7787197 Gray DB et al. A subjective measure of environmental facilitators and barriers for people with mobility limitations. Disability and Rehabilitation, 2008, 30:434-457. doi: http://dx.doi.org/10.1080/09638280701625377 PMID:17943511 Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord, 2010, 48:73-79. doi: http://dx.doi.org/10.1038/sc.2009.92 PMID:19636329 Noreau L, Fougeyrollas P, Boschen KA. The perceived influence of the environment on social participation among individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2002, 7:56-72. doi: http://dx.doi. org/10.1310/1UGA-EY2T-N6XP-1PHE Whiteneck G et al. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1793-1803. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.024 PMID:15520974 Reinhardt JD, Post MWM. Measurement and evidence of environmental determinants of participation in spinal cord injury: a systematic review of the literature. Topics in Spinal Cord Injury Rehabilitation, 2010, 15:26-48. doi: http://dx.doi. org/10.1310/sci1504-26 WHO. World report on disability. Geneva, World Health Organization, 2011.
3. 4. 5.
6. 7.
8.
188
Kapitel 7
Zugängliche Umwelten für Querschnittgelähmte
9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. 32. 33. 34. 35. 36.
Dovey K. Home and homelessness. In: Altman I, Wener CM, eds. Home environments, human behavior, and environment: advances in theory and research. New York, NY, Plenum, 1985:33−63. Heywood F. The health outcomes of housing adaptations. Disability & Society, 2004, 19:129-143. doi: http://dx.doi. org/10.1080/0968759042000181767 Rauh VA, Landrigan PJ, Claudio L. Housing and health intersection of poverty and environmental exposures. Annals of the New York Academy of Sciences, 2008, 1136:276-288. doi: http://dx.doi.org/10.1196/annals.1425.032 PMID:18579887 Mann WC et al. Environmental problems in the homes of elders with disabilities. The Occupational Therapy Journal of Research, 1994, 14:191-211. Stark S. Creating disability in the home: the role of environmental barriers in the United States. Disability & Society, 2001, 16:37-49. doi: http://dx.doi.org/10.1080/713662037 Steinfeld E, Shea SM. Enabling home environments: identifying barriers to independence. Technology and Disability, 1993, 2:69-79. Toran K. Accessible housing database and manual. Berkeley, CA, World Institute on Disability, 2000 (http://www.wid.org/ publications/accessible-housing-database-and-manual, accessed 28 March 2012). Forrest G, Gombas G. Wheelchair-accessible housing: its role in cost containment in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1995, 76:450-452. doi: http://dx.doi.org/10.1016/S0003-9993(95)80576-1 PMID:7741616 Moore W. NHS and local government try to stop introduction of “bed blocking” fines. British Medical Journal, 2003, 326:184. doi: http://dx.doi.org/10.1136/bmj.326.7382.184/g PMID:12549436 Eide AH, Benedicte I. Living conditions among people with disabilities in developing countries. In: Eide AH et al., eds. Disability and poverty: a global challenge. University of Bristol, The Policy Press, 2011, 55−70. IDRM. Regional report of the Americas. Chicago, IL, International Disability Rights Monitor, 2004 (http://idrmnet.org/pdfs/ IDRM_Americas_2004.pdf, accessed 27 March 2012). IDRM. Regional report of Asia. Chicago, IL, International Disability Rights Monitor, 2005 (http://idrmnet.org/pdfs/CIR_ IDRM_Asia_05.pdf, accessed 27 March 2012). IDRM. Regional report of Europe. Chicago, IL, International Disability Rights Monitor, 2007 (http://idrmnet.org/pdfs/IDRM_ Europe_2007.pdf, accessed 20 April 2012). Beresford R, Rhodes D. Housing and disabled children. York, Joseph Rowntree Foundation, 2008. Imrie R. The role of the building regulations in achieving housing quality. Environment and Planning. B, Planning & Design, 2004, 31:419-437. doi: http://dx.doi.org/10.1068/b3056 Milner J, Madigan R. Regulation and innovation: rethinking inclusive housing design. Housing Studies, 2004, 19:727-744. doi: http://dx.doi.org/10.1080/0267303042000249170 Habinteg. Mind the step. London, Habinteg Housing Association, 2010. Jacobs K et al. What future for public housing? A critical analysis. Hobart, Australian Housing and Urban Research Institute Southern Research Centre, 2010. Hills J. Ends and means: the future roles of social housing in England. London, ESRC Research Centre for Analysis of Social Exclusion/ London School of Economics and Political Science, 2007 (CASE report 34). Scanlon K, Whitehead C, eds. Social housing in Europe II: a review of policies and outcomes. London, London School of Economics, 2008. Wehman P et al. Removing transportation barriers for persons with spinal cord injuries: an ongoing challenge to community reintegration. Journal of Vocational Rehabilitation, 1999, 13:21-30. Scheer J et al. Access barriers for persons with disabilities: the consumer’s perspective. Journal of Disability Policy Studies, 2003, 13:221-230. doi: http://dx.doi.org/10.1177/104420730301300404 Wee J, Paterson M. Exploring how factors impact the activities and participation of persons with disability: constructing a model through grounded theory. Qualitative Report, 2009, 14:165-200. United Spinal Association. Accessible air travel: a guide for people with disabilities. East Elmhurst, NY, United Spinal Association, 2012. (http://www.unitedspinal.org/disability-publications-resources/disability-publications/, accessed 26 March 2012). Iwarsson S, Jensen G, Ståhl A. Travel chain enabler: development of a pilot instrument for assessment of urban public bus transport accessibility. Technology and Disability, 2000, 12:3-12. Roberts P, Babinard J. Transport strategy to improve accessibility in developing countries. Washington, DC, World Bank, 2005. IRTU. Economic aspects of taxi accessibility. Paris/Geneva, European Conference of Ministers of Transport/International Road Transport Union, 2001. Stahl A. The provision of transportation for the elderly and handicapped in Sweden. Lund, Institutionen för Trafikteknik/Lunds Tekniska Högskola, 1995.
189
Querschnittlähmung – Internationale Perspektiven
37. Wretstrand A et al. Injuries in special transport services – situations and risk levels involving wheelchair users. Medical Engineering & Physics, 2009, 32:248-253. doi: http://dx.doi.org/10.1016/j.medengphy.2009.07.022 PMID:19720552 38. Sapey B, Stewart J, Donaldson G. Increases in wheelchair use and perceptions of disablement. Disability & Society, 2005, 20:489-505. doi: http://dx.doi.org/10.1080/09687590500156162 39. Barf HA et al. Restrictions in social participation of young adults with spina bifida. Disability and Rehabilitation, 2009, 31:921-927. doi: http://dx.doi.org/10.1080/09638280802358282 PMID:19116807 40. Ahn HC et al. Architectural barriers to persons with disabilities in business in an urban community. The Journal of Burn Care & Rehabilitation, 1994, 15:175-179. doi: http://dx.doi.org/10.1097/00004630-199403000-00014 41. United States Access Board. Uniform Federal Accessibility Standards (UFAS). Washington, DC, United States Access Board, 2007 (http://www.access-board.gov/ufas/ufas-html/ufas.htm, accessed 27 March 2012). 42. Schneider M, Couper J, Swartz L. Assessment of accessibility of health facilities to persons with disabilities. Matieland, Stellenbosch University, 2010. 43. Allotey P et al. The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegia in Australia and Cameroon. Social Science & Medicine, 2003, 57:949-958. doi: http://dx.doi.org/10.1016/S02779536(02)00463-X PMID:12850119 44. Rimmer JH et al. Accessibility of health clubs for people with mobility disabilities and visual impairments. American Journal of Public Health, 2005, 95:2022-2028. doi: http://dx.doi.org/10.2105/AJPH.2004.051870 PMID:16254234 45. Williams R et al. Outdoor recreation participation of people with mobility disabilities. Selected results of the National Survey of Recreation and the Environment. Journal of Park and Recreation Administration, 2004, 22:85-101. 46. Xiang H et al. Risk of vehicle–pedestrian and vehicle–bicyclist collisions among children with disabilities. Accident; Analysis and Prevention, 2006, 38:1064-1070. doi: http://dx.doi.org/10.1016/j.aap.2006.04.010 PMID:16797463 47. Tight MR, Carsten OMJ, Sherborne D. Problems for vulnerable road users in Great Britain. Working Paper 292. Leeds, Institute for Transport Studies, University of Leeds, 1989. 48. Williams K, Savill T, Wheeler A. Review of the road safety of disabled children and adults. TRL Report TRL559. Wokingham, Transport Research Laboratory, 2002. 49. Martin LM. Wheelchair accessibility of public buildings in Utica, New York. The American Journal of Occupational Therapy., 1987, 41:217-221. doi: http://dx.doi.org/10.5014/ajot.41.4.217 PMID:3688133 50. Rivano-Fischer D. Wheelchair accessibility of public buildings in Al Ain, United Arab Emirates (UAE). Disability and Rehabilitation, 2004, 26:1150-1157. doi: http://dx.doi.org/10.1080/096382804100017214843 PMID:15371028 51. Scelza WM et al. Perceived barriers to exercise in people with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2005, 84:576-583. doi: http://dx.doi.org/10.1097/01.phm.0000171172.96290.67 PMID:16034226 52. Welage N, Liu KPY. Wheelchair accessibility of public buildings: a review of the literature. Disability and Rehabilitation. Assistive Technology, 2011, 6:1-9. doi: http://dx.doi.org/10.3109/17483107.2010.522680 PMID:20958181 53. Hamzat TK, Dada OO. Wheelchair accessibility of public buildings in Ibadan, Nigeria. Asia Pacific Disability Rehabilitation Journal, 2005, 16:115-124. 54. Waenlor W et al. Facilities for the disabled in the commercial districts of Bangkok − are they adequate? The Southeast Asian Journal of Tropical Medicine and Public Health, 2002, 33 Suppl. 3:164-165. PMID:12971501 55. UNESCAP. Disability at a glance 2009: a profile of 36 countries and areas in Asia and the Pacific. Bangkok, United Nations Economic and Social Commission for Asia and the Pacific, 2009. 56. NDA. Building for everyone: inclusion, access and use. Dublin, National Disability Authority, 2002 (http://www.nda.ie/cntmgmtnew.nsf/0/EBD4FB92816E8BB480256C830060F761/$File/Building_for_Everyone.pdf, accessed 28 March 2012). 57. UNAPD. Uganda National Action on Physical Disability. Accessibility standards. A practical guide to create a barrier-free physical environment in Uganda. Kampala, National Action on Physical Disability/Ministry of Gender, Labour and Social Development, 2010 (http://www.danskhandicapforbund.dk/index.php/download_file/-/view/835/, accessed April 11, 2012). 58. USA. National Commission on Architectural Barriers. Design for all Americans. A report of the National Commission on Architectural Barriers to Rehabilitation of the Handicapped. Washington, DC, US Government Printing Office, 1967 (http:// www.eric.ed.gov/PDFS/ED026786.pdf, accessed 28 March 2012). 59. Newman SD. Evidence-based advocacy using Photovoice to identify barriers and facilitators to community participation after spinal cord injury. Rehabilitation Nursing, 2010, 35:47-59. doi: http://dx.doi.org/10.1002/j.2048-7940.2010. tb00031.x PMID:20306612 60. World Bank. People with disabilities in India: from commitments to outcomes. Washington, DC, World Bank, 2009 (http:// siteresources.worldbank.org/INDIAEXTN/Resources/295583-1171456325808/DISABILITYREPORTFINALNOV2007.
190
Kapitel 7
Zugängliche Umwelten für Querschnittgelähmte
61.
62.
63. 64. 65. 66. 67.
68. 69.
70. 71. 72.
73. 74. 75. 76. 77. 78. 79. 80.
81.
pdf?bcsi_scan_C7A381BA8BD8A412=0&bcsi_scan_filename=DISABILITYREPORTFINALNOV2007.pdf accessed 28 April 2012). Council of Canadians with Disabilities. Celebrating our accomplishments. Winnipeg, Council of Canadians with Disabilities, 2011. (http://www.ccdonline.ca/media/socialpolicy/booklet2011/celebrating-our-accomplishments.pdf?bcsi_scan_ C7A381BA8BD8A412=0&bcsi_scan_filename=celebrating-our-accomplishments.pdf, accessed 28 March 2012). Venter C et al. Enhanced accessibility for people with disabilities living in urban areas. Ithaca, NY, Cornell University, 2002. (http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1258&context=gladnetcollect&seiredir=1&referer=http%3A%2F%2Fwww.google.ch%2Furl%3Fsa%3Dt%26rct%3Dj%26q%3Dpr%252Fint%252F248% 252F02%26source%3Dweb%26cd%3D1%26sqi%3D2%26ved%3D0CCMQFjAA%26url%3Dhttp%253A%252F%252Fdig italcommons.ilr.cornell.edu%252Fcgi%252Fviewcontent.cgi%253Farticle%253D1258%2526context%253Dgladnetcolle ct%26ei%3DXeOHT6LtGI-xhAeY49DSCQ%26usg%3DAFQjCNH_Z84ektdtheC2GJkOEpCIOWz__g%26sig2%3DJm3pxr0 kB7v7fNPOxCNYFg&bcsi_scan_97961A1EAF8C426F=8OF3I6CqR1a6YeGeQbpDFIMfwCxTAAAANYbiDQ==&bcsi_scan_ filename=viewcontent.cgi, accessed 13 April 2012). Kunieda M, Roberts P. Inclusive access and mobility in developing countries. Washington, DC, World Bank, 2007 (http://siteresources.worldbank.org/INTTSR/Resources/07-0297.pdf, accessed 28 March 2012). Clarke-Scott MA, Nowlan S, Gutman G. Progressive housing design and home technologies in Canada. In: Preiser WFE, Ostroff E, eds. Universal design handbook. New York, NY, McGraw Hill, 2001, 36.1–36.20. Raheja G. Enabling environments for the mobility impaired in the rural areas. Roorkee, Indian Institute of Technology, 2008. Imrie R, Kumar M. Focusing on disability and access in the built environment. Disability & Society, 1998, 13:357-374. doi: http://dx.doi.org/10.1080/09687599826687 Noreau L, Boschen K. Intersection of participation and environmental factors: a complex interactive process. Archives of Physical Medicine and Rehabilitation, 2010, 91 Suppl:S44-S53. doi: http://dx.doi.org/10.1016/j.apmr.2009.10.037 PMID:20801279 Reinhardt JD et al. Measuring impact of environmental factors on human functioning and disability: a review of various scientific approaches. Disability and Rehabilitation, 2011, 33:2151−2165 (E-pub 7 May 2011). Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors. Archives of Physical Medicine and Rehabilitation, 2009, 90 Suppl:S22-S35. doi: http://dx.doi. org/10.1016/j.apmr.2009.06.009 PMID:19892071 Fänge A, Iwarsson S. Physical housing environment: Development of a self-assessment instrument. Canadian Journal of Occupational Therapy, 1999, 66:250-260. PMID:10641377 Fänge A, Iwarsson S. Accessibility and usability in housing: construct validity and implications for research and practice. Disability and Rehabilitation, 2003, 25:1316-1325. PMID:14617438 Green RJ. An introductory theoretical and methodological framework for a universal mobility index (UMI) to quantify, compare, and longitudinally track equity of access across the built environment. Journal of Disability Policy Studies, 2011, 21:219-229. doi: http://dx.doi.org/10.1177/1044207310384998 Stark S et al. Development of a measure of receptivity of the physical environment. Disability and Rehabilitation, 2007, 29:123-137. doi: http://dx.doi.org/10.1080/09638280600731631 PMID:17364763 Stark SL et al. The interrater reliability of the community health environment checklist. Archives of Physical Medicine and Rehabilitation, 2008, 89:2218-2219. doi: http://dx.doi.org/10.1016/j.apmr.2008.04.020 PMID:18996253 Heywood F. Money well spent: the effectiveness and value of housing adaptations, Bristol, The Policy Press, 2001. Olsen RV, Ehrenkrantz E, Hutchings B. Creating supporting environments for people with dementia and their caregivers through home modifications. Technology and Disability, 1993, 2:47-57. Stark S. Home modifications that enable occupational performance. In: Letts L, Rigby P, Stewart D, eds. Using environments to enable occupational performance. Thorofare, NJ, Slack, 2003. Tually S, Beer A, Mcloughlin P. Housing assistance, social inclusion and people living with a disability. AHURI Final Report 178. Melbourne, Australian Housing and Urban Research Institute Southern Research Centre, 2011. Fänge A, Iwarsson S. Changes in accessibility and usability in housing: an exploration of the housing adaptation process. Occupational Therapy International, 2005, 12:44-59. doi: http://dx.doi.org/10.1002/oti.14 PMID:15962699 Ratzka A. A brief survey of studies on costs and benefits of non-handicapping environments. Presentation at the International Congress on Accessibility in Rio de Janeiro, Brazil, June 1994. Stockholm, Independent Living Institute, 1994 (http://www. independentliving.org/cib/cibrio94access.html, accessed 28 March 2012). Lansley P et al. Adapting the homes of older people: a case study of costs and savings. Building Research and Information: the international journal of research, development and demonstration, 2004, 32:468–483. doi:10.1080/0961321042000269429 doi: http://dx.doi.org/10.1080/0961321042000269429
191
Querschnittlähmung – Internationale Perspektiven
82. Jones C. Review of housing adaptations including disabled facilities grants – Wales. Cardiff, Welsh Assembly Government, 2005 (http://new.wales.gov.uk/dsjlg/research/houseadaptreview/reviewe.pdf?lang=en, accessed 27 March 2012). 83. CMHC/SCHL. Homeowner residential rehabilitation assistance program. Homeowner RRAP. Ottawa, Canadian Mortgage and Housing Corporation (http://www.cmhc-schl.gc.ca/en/co/prfinas/prfinas_001.cfm, accessed 28 March 2012). 84. Tremblay KR, Birdsong C. Home adaptations for disabled persons. Fact sheet No. 9.529. Fort Collins, CO, Colorado State University, 2011 (http://www.ext.colostate.edu/pubs/consumer/09529.pdf, accessed 11 April 2012). 85. WHO. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. 86. Cities Alliance. The enabling environment for housing finance in Kenya. Civis: Shelter Finance for the Poor Series, 2003, issue 4. Washington, DC, Cities Alliance, 2003 (http://www.citiesalliance.org/ca/sites/citiesalliance.org/files/ Kenya+CIVIS+April03[1].pdf, accessed 27 March 2012). 87. Parker S, Fisher KR. Facilitators and barriers in Australian disability housing support policies: using a human rights framework. Disability Studies Quarterly, 2010, 30:3-4. 88. Hammerman CD, Bennett S. The disability housing market: opportunity for community development finance as the Americans with Disabilities Act turns 20. Community Development Investment Review, 2009, 5:88−96 (http://www.frbsf.org/ publications/community/review/vol5_issue3/hammerman_bennett.pdf, accessed 27 March 2012). 89. Scotts M, Saville-Smith K, James B. International trends in accessible housing for people with disabilities: a selected review of policies and programmes in Europe, North America, United Kingdom, Japan and Australia. Wellington, Centre for Research, Evaluation and Social Assessment, 2007 (http://www.chranz.co.nz/pdfs/working-paper-2.pdf, accessed 11 April 2012). 90. Brewerton J, Darton D, eds. Designing lifetime homes. York, Joseph Rowntree Foundation, 1997. 91. Mayor of London. London Accessible Housing Register: a good practice guide for social housing landlords. London, Mayor of London, 2011 (http://www.london.gov.uk/sites/default/files/LAHR%20Good%20practice%20guide%202011.pdf, accessed 28 March 2012). 92. Truesdale S, Steinfeld E. Visit-ability: an approach to universal design in housing. Buffalo, NY, Center for Inclusive Design and Environmental Access, 2002. 93. Schwartz AF. Housing policy in the United States: an introduction. New York, NY, Routledge, 2006. 94. Doble A, Sieniuc R. Integration and innovation: the Seabird Island project. ArchitectureBC. Journal of the Architectural Institute of British Columbia, 2003, Issue 10, 13–20. 95. European Commission. 2010: A Europe accessible for all. ETCAATS, e-learning for accessible tourism, 2003 (http://www. etcaats.eu/?i=etcaats.en.etcaatslibrary.852, accessed 6 March 2012). 96. CECODHAS. Housing organisations creating social capital. Exchange (published by CECODHAS Housing Europe – The European Federation of Public, Cooperative & Social Housing, Brussels), Spring 2009 (http://www.housingeurope.eu/www. housingeurope.eu/uploads/file_/exch%20spring_09en.pdf accessed 11 April 2012). 97. Randall B. Breaking down the barriers: social housing for people with disabilities in Europe. Brussels, European Liaison Committee for Social Housing, 2010. 98. Whitehead C, Scanlon K. Social housing in Europe. London, London School of Economics, 2007 (http://vbn.aau.dk/ files/13671493/SocialHousingInEurope.pdf, accessed 4 January 2012). 99. SELHP. Wheelchair homes design guidelines. Guidelines to achieve the necessary standards for wheelchair users’ dwellings. London, South East London Housing Partnership, 2008 (http://www.selondonhousing.org/Documents/080530%20 WC%20guide%20May%2008.pdf, accessed 28 March 2012). 100. South Australia. Housing options for people with a disability. Adelaide, Government of South Australia (http://www.sa.gov. au/subject/Community+Support/Disability/Adults+with+disability/Housing+and+home+assistance/Housing+options+f or+people+with+a+disability, accessed 28 March 2012). 101. Rwanda. Rwanda demobilization program builds homes for disabled ex-combatants (News release). Kigali, World Bank, 2009 (http://web.worldbank.org/WBSITE/EXTERNAL/COUNTRIES/AFRICAEXT/0,contentMDK:22275330~pagePK:146736~piPK:22 6340~theSitePK:258644,00.html, accessed 28 March 2012). 102. Leonardi M et al. Integrating research into policy planning: MHADIE policy recommendations. Disability and Rehabilitation, 2010, 32 Suppl 1:S139-S147. doi: http://dx.doi.org/10.3109/09638288.2010.520807 PMID:20874663 103. Wretstrand A et al. Older people and local public transit: mobility effects of accessibility improvements in Sweden. Journal of Transport and Land Use, 2010, 2:49-65. 104. Steinfeld E. Universal design in mass transportation. In: Preiser WFE, Ostroff E, eds. Universal design handbook. New York, NY, McGraw Hill, 2001:24.1–24.25. 105. Daamen W, De Boer E, De Kloe R. Assessing the gap between transport vehicles and platforms as a barrier for the disabled: use of laboratory experiments. Transportation Research Record, 2008, 2072:131-138. doi: http://dx.doi.org/10.3141/2072-14
192
Kapitel 7
Zugängliche Umwelten für Querschnittgelähmte
106. Dejeammes M. Overview of technological developments for accessible transport systems and mobility in Europe. Paper delivered at the 12th International Conference on Mobility and Transport for Elderly and Disabled Persons (TRANSED), Hong Kong, 2−4 June 2010 (http://www.sortclearinghouse.info/cgi/viewcontent.cgi?article=1647&context=research accessed 28 March 2012). 107. Sage Traveling web site. Disabled travel to Europe. (http://www.sagetraveling.com accessed 2013). 108. Rickert T. Bus rapid transit accessibility guidelines. Washington, DC, World Bank, 2007 (http://siteresources.worldbank.org/ DISABILITY/Resources/280658-1172672474385/BusRapidEngRickert.pdf, accessed 20 April 2012). 109. Wright L. Planning guide: bus rapid transit. Eschborn, Deutsche Gesellschaft für Technische Zusammenarbeit, 2004 (http:// ecoplan.org/library/clinton/brt-planning%20guide-gtz.pdf, accessed 28 March 2012). 110. Imrie R. Disability and the city: international perspectives. London, Paul Chapman Publishing, 1996. 111. Walters J. Overview of public transport policy developments in South Africa. Research in Transportation Economics, 2008, 22:98-108. doi: http://dx.doi.org/10.1016/j.retrec.2008.05.023 112. Maynard A. Can measuring the benefits of accessible transport enable a seamless journey? Journal of Transport and Land Use, 2009, 2:21-30. 113. Schalekamp H et al. An international review of paratransit regulation and integration experiences. Lessons for public transport system rationalisation and improvement in African cities. Rondebosch, African Centre of Excellence for Studies in Public and Non-motorised Transport (ACET), 2010 (http://www.fut.se/download/18.1166db0f120540fe049800010991/ Mfinanga++international+review.pdf, accessed 28 March 2012). 114. Ståhl A. Adaptation of the whole travel chain – benefits and attitudes. Paper presented at the 23rd PTRC European Transport Forum, Coventry, United Kingdom, 1996. 115. International ITS. FLIPPER: improving the provision of flexible transport services. 2009 (http://www.itsinternational.com/sections/transmart/features/flipper-improving-the-provision-of-flexible-transport-services/?locale=en, accessed 11 April 2012). 116. Finn B. Market role and regulation of extensive urban minibus services as large bus service capacity is restored: case studies from Ghana, Georgia and Kazakhstan. Research in Transportation Economics, 2008, 22:118-125. doi: http://dx.doi. org/10.1016/j.retrec.2008.05.012 117. Lindau LA et al. Alternative financing for bus rapid transit (BRT): the case of Porto Alegre, Brazil. Research in Transportation Economics, 2008, 22:54-60. doi: http://dx.doi.org/10.1016/j.retrec.2008.05.018 118. Peters B. Driving performance and workload assessment of drivers with tetraplegia: an adaptation evaluation framework. Journal of Rehabilitation Research and Development, 2001, 38:215-224. PMID:11392654 119. Biering-Sørensen F, Hansen RB, Biering-Sørensen J. Mobility aids and transport possibilities 10−45 years after spinal cord injury. Spinal Cord, 2004, 42:699-706. doi: http://dx.doi.org/10.1038/sj.sc.3101649 PMID:15289807 120. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/ oti.228 PMID:17624872 121. Kohrman M. Motorcycles for the disabled: mobility, modernity and the transformation of experience in urban China. Culture, Medicine and Psychiatry, 1999, 23:133-155. doi: http://dx.doi.org/10.1023/A:1005455815637 PMID:10388946 122. Kiyono Y et al. Car-driving ability of people with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2001, 82:13891392. doi: http://dx.doi.org/10.1053/apmr.2001.26089 PMID:11588742 123. Wallace JF. A policy analysis of the assistive technology alternative financing program in the United States. Journal of Disability Policy Studies, 2003, 14:74-81. doi: http://dx.doi.org/10.1177/10442073030140020301 124. Dalto M. Maryland’s assistive technology loan program: successful outreach and partnerships. Journal of Disability Policy Studies, 2003, 14:91-94. doi: http://dx.doi.org/10.1177/10442073030140020601 125. Motability Operations. Your guide to getting a Motability car: Car Info Guide April 2011. London, Motability Operations, 2011 (http://www.motabilitycarscheme.co.uk/documents/PDFs/Car%20Scheme/Your%20guide%20to%20getting%20a%20 Motability%20car.pdf, accessed 28 March 2012). 126. Hammond M. The Utah Assistive Technology Foundation: program features and initiatives. Journal of Disability Policy Studies, 2003, 14:95-97. doi: http://dx.doi.org/10.1177/10442073030140020701 127. Royal Bank of Scotland Group Plc v Allen, 2009, EWCA Civ 1213. England and Wales Court of Appeal (Civil Division) Decisions (http://www.bailii.org/ew/cases/EWCA/Civ/2009/1213.html, accessed 20 April 2012). 128. McClain L. Shopping center wheelchair accessibility: ongoing advocacy to implement the Americans with Disabilities Act of 1990. Public Health Nursing (Boston, Mass.), 2000, 17:178-186. doi: http://dx.doi.org/10.1046/j.15251446.2000.00178.x PMID:10840287 129. AMCTO. Ontario municipal accessibility toolkit. Mississauga, Association of Municipal Managers, Clerks and Treasurers of Ontario, 2010 (http://www.accessiblemunicipalities.ca/home.asp, accessed 27 March 2012). 130. Iezzoni LI, Ronan LJ. Disability legacy of the Haitian earthquake. Annals of Internal Medicine, 2010, 152:812-814. PMID:20231547
193
Kapitel 8 Bildung und Beschäftigung
„Meine Lehrer, Freunde und Angehörigen unterstützen mich sehr, denn sie wissen, was ich leisten kann. Kinder aus anderen Schulen ärgern mich oft, nur weil ich im Rollstuhl sitze. Aber damit hören sie meist schnell auf, denn ich bin ziemlich schlagfertig… Wenn ich etwas ändern wollte, dann wäre es die Einstellung der Menschen gegenüber Menschen mit Behinderung, damit sie uns ganz normal behandeln und uns nicht bemitleiden oder denken, wir seien dumm.“ (Kiringawa, Neuseeland) „Dozenten und Verwaltungspersonal haben oft nicht verstanden, warum es so wichtig ist, dass eine Vorlesung in einem Saal stattfindet, der für Rollstuhlfahrer zugänglich ist. Sie konnten nicht nachvollziehen, warum 300 Studenten Unannehmlichkeiten auf sich nehmen sollten, wegen eines einzigen Studenten mit Behinderung. Zudem haben meine Kommilitonen ohne Behinderung angemessene Vorkehrungen häufig als ungerechten Vorteil angesehen… Jetzt gibt es einen Beauftragten für Behinderung an der Universität. Nun werden Verwaltungspersonal, Dozenten und Studenten immer wieder sensibilisiert in Bezug auf angemessene Vorkehrungen für Studenten mit Behinderung gemäß der aktuellen südafrikanischen Gesetzgebung.“ (Lizelle, Südafrika) „Als ich krank wurde bestand meine Arbeit darin, Menschen Essen nach Hause zu liefern. Ich dachte ich würde meinen Job verlieren durch den Rollstuhl. Der Ladenbesitzer hat immer gesagt, ich könne meinen Job behalten. Als ich wieder anfing zu arbeiten, leitete ich den Laden: Ich kontrolliere Produkte, kümmere mich um Lieferanten, beaufsichtige die Mitarbeiter und bin verantwortlich für das Geld, das reinkommt. Durch die Arbeit fühle ich mich gut: Ich treffe andere Leute, verlasse mein Haus und habe eine Zukunft. Das hilft mir die Sorgen in Zusammenhang mit der Behinderung zu vergessen.“ (José, Argentinien) „Vor sechs Jahren wurde ich durch eine Wirbelsäulentuberkulose zum Paraplegiker – damals war ich 30. Im ersten Jahr war ich niedergeschlagen und depressiv. Ich wollte nichts tun, nur im Bett liegen. Eines Tages drängte mich meine Mutter einen Nachbar zu besuchen. Ich sah ihn im Bett liegen. Er konnte seine Gliedmaßen nicht mehr bewegen, aber er lächelte trotzdem. Da sah ich an mir herunter und mir wurde klar, dass meine Arme und Hände noch normal waren und ich mehr tun konnte. Danach begann ich mich selbst zu versorgen und nahm an einer beruflichen Bildungsmaßnahme für Menschen mit Behinderung teil. Jetzt führe ich einen kleinen Elektroladen zuhause und verdiene rund 3000 Baht pro Monat – das reicht mir zum Leben.“ (Boonpeng, Thailand) „Nachdem ich meine Behinderung akzeptiert und mich beim Sport bewiesen hatte, stand mir die Tür zum Leben wieder offen. Der Wunsch wieder zu arbeiten war entscheidend. Die Arbeitsvermittlung hat mir sehr geholfen und für mich einen Arbeitsplatz in einem staatseigenen Unternehmen gefunden…Bald erkannte ich, dass ich mehr erreichen wollte und ich schaute mich nach einem neuen Job um. Ich fand einen in einem privaten Unternehmen und konnte dort viel Erfahrung sammeln. Ich hatte das Glück, in einer Firma zu arbeiten, in der Menschen nach ihren Fähigkeiten beurteilt wurden und nicht nach ihrer Behinderung. Innerhalb weniger Jahre wurde ich Geschäftsführer.“ (Janez, Slowenien)
8
Bildung und Beschäftigung Bei Bildung geht es nicht nur ums Lernen, sondern auch darum, ein aktives Mitglied der Gesellscha zu werden. Beschä igung scha auch Zugehörigkeit, nicht nur Einkommen. Menschen mit Querschnittlähmung (QSL) haben ein Recht auf Zugang zu Bildung und Beschä igung, genau wie alle anderen Menschen auch. Artikel 24 der UN-Behindertenrechtskonvention (BRK) (1) betont, wie wichtig es ist, dass Regierungen gleichberechtigten Zugang zu einem „inklusiven Bildungssystem auf allen Ebenen“ gewährleisten und angemessene Vorkehrungen sowie individuelle Unterstützungsleistungen anbieten, um Bildung zu erleichtern. Artikel 27 verbietet sämtliche Formen der Diskriminierung im Bereich Beschä igung, setzt sich ein für den Zugang zu beru icher Bildung und zu Möglichkeiten der Selbständigkeit und fordert angemessene Vorkehrungen am Arbeitsplatz. Bildung ist ein Schritt in Richtung Beschä igung und gesellscha licher Teilhabe für: ■ Kinder, die mit Spina bifida zur Welt gekommen sind und alle Ebenen des Bildungssystems durchlaufen müssen, von der Grundschule bis zur Universität und darüber hinaus; ■ junge Erwachsene, die gerne nach einer erworbenen QSL die Schule oder Universität abschließen möchten; ■ Erwachsene mit erworbener QSL, die eine Umschulung oder Weiterbildung machen müssen, um die Tür zu neuen beruflichen Möglichkeiten zu öffnen. Für die Integration ins allgemeine Bildungssystem sind möglicherweise einige umweltbedingte Anpassungen nötig. Ein junger Mensch kann zudem Beratung und andere vorbereitende Unterstützung benötigen, um Gefühle wie geringe Selbstwertschätzung oder ein geringes Selbstbewusstsein zu überwinden, die einer Rückkehr zur Schule möglicherweise im Wege stehen oder ihn daran hindern, die nächsten Schritte in Richtung höherer Bildung zu unternehmen. Eine sinnvolle Arbeit zu bekommen und zu behalten oder nach der QSL wieder an seinen Arbeitsplatz zurückzukehren kann ebenfalls eine Herausforderung für einen querschnittgelähmten Menschen sein. Aber mithilfe von beru icher Rehabilitation, Beratung und Vorbereitung, angemessenen unterstützenden Technologien sowie Anpassungen und Vorkehrungen seitens des 197
Querschnittlähmung – Internationale Perspektiven
Arbeitgebers, können Menschen mit QSL die meisten Arbeiten ausführen. Arbeit ist nicht nur wichtig als Quelle wirtscha licher Sicherheit; sie bildet auch das Fundament für ein sinnerfülltes Leben, da sie soziale Kontakte vermittelt und Zielstrebigkeit und Selbstwert fördert. Vollständige Teilhabe an Bildung und Beschä igung für querschnittgelähmte Menschen hängt davon ab, falschen Vorstellungen in Bezug auf das Gesundheitsproblem ein Ende zu machen. Wenn Lehrer, Schulverwaltungspersonal und Mitschüler über QSL aufgeklärt werden, erleichtert dies Kindern oder jungen Erwachsenen mit QSL den Übergang oder die Rückkehr zu Schule oder Studium. Im Bereich Beschäftigung können Annahmen darüber, was ein Mensch mit QSL nicht kann, verhindern, dass eine quali zierte Arbeitskra eine Anstellung ndet oder aber im Falle einer Anstellung dafür sorgen, dass der betro enen Person von Kollegen nicht der nötige Respekt entgegen gebracht wird. O besteht der beste Weg diesen falschen Wahrnehmungen zum ema QSL entgegenzuwirken, in der direkten Erfahrung, einen querschnittgelähmten Menschen als Mitschüler oder Arbeitskollegen zu haben, also im gemeinsamen Lernen oder der Zusammenarbeit.
Querschnittlähmung und Zugang zu Bildung Kinder mit Behinderung werden in der Regel seltener eingeschult und brechen die Schule häuger ab. Zudem werden sie in der Schule weniger gefördert (2). In Ländern mit niedrigem Nationaleinkommen, ist der Zugang zu Bildung auf allen Ebenen beschränkt (3) und der Zugang zu höherer Bildung für junge Menschen mit Behinderung nahezu nicht vorhanden (4 – 6). Daten aus Haushaltserhebungen in Malawi, Namibia, Sambia und Simbabwe haben gezeigt, dass zwischen 9 und 18% der Kinder ohne Behinderung im Alter von 5 Jahren oder älter noch nie eine Schule besucht haben. Bei den behinderten 198
Kindern lag dieser Anteil jedoch bei 24-39% (7– 10). Eine kambodschanische Studie schätzt den Anteil der Kinder, die nie eine Schule besucht haben sogar auf 45% (11). In vielen Ländern mit niedrigem Nationaleinkommen erschwert der allgemeine Mangel an Bildungsressourcen es den Bildungseinrichtungen massiv, Kinder mit QSL oder anderen Behinderungen aufzunehmen (12). Ein permanenter Mangel an nanziellen Ressourcen führt zu dauerha er Personalknappheit, fehlender medizinischer Versorgung und einem Mangel an Ausrüstung und Einrichtungen (13). Daten aus Kenia belegen beispielsweise, dass die Barrieren zu höherer Bildung von der mangelnden Verfügbarkeit an Hochschulen, über die physische Unzugänglichkeit, den Mangel an Übergangsdiensten nach der Sekundarbildung, einstellungsbedingte Barrieren, wie etwa Stigmata bis hin zur allgemein schlechten wirtscha lichen Situation behinderter Schüler und Studenten reichen (4). Für Länder mit geringem und mittlerem Nationaleinkommen ist es eine immense Herausforderung, alle Kinder mit Behinderung in das Bildungssystem einzubeziehen – Fortschritte sind jedoch möglich, vor allem, wenn man Schülern mir Behinderung und ihren Eltern mehr Gehör schenkt (14). Es gibt zwar Evidenz zur Bildungsbeteiligung von Kindern und jungen Erwachsenen mit Behinderung, aber diese Daten liefern nur selten Informationen konkret zu QSL. Manchmal lassen sich Informationen aus Daten zu „orthopädischen Behinderungen“ oder „körperlichen Behinderungen“ ableiten, die ein gewisses Bild ermöglichen. Die meisten Kinder mit QSL kehren nach der Verletzung und der Rehabilitation wieder in die Schule zurück – daraus ergeben sich Bedürfnisse an speziellen Diensten (15). Da die QSL-Inzidenzraten hoch sind bei Menschen in den späten Teenagerjahren und Anfang der 20er (vgl. Kapitel 2), liegt der Fokus erneut auf der Sekundarausbildung und der postsekundären Bildung (16). Die pädiatrische Altersgruppe, die mit der Schule beginnt, besteht
Kapitel 8
Bildung und Beschäftigung
fast ausschließlich aus Kindern mit Spina bi da (17), die besondere Anforderungen haben. Dies unterscheidet sie von denjenigen Betro enen, die nach der Verletzung in die Schule zurückkehren. Dennoch verschiebt sich die Au eilung nach Alter bei Eintreten der QSL nach oben. Dies liegt an der Zunahme der Fälle von spät eintretender traumatischer und nicht-traumatischer QSL (16, 18, 19). Hierbei wird impliziert, dass ältere querschnittgelähmte Erwachsene zu Bildung oder Ausbildung zurückkehren, um neue Fähigkeiten zu entwickeln und so über einen neuen Arbeitsplatz den Weg zurück in die Beschä igung zu nden. In Bezug auf Kinder mit Spina bi da ist, verglichen mit anderen Kohorten, etwas mehr bekannt. Dies liegt daran, dass diese Kinder komplexe Bedürfnisse hinsichtlich der Bildung haben, was auf eine Vielzahl von körperlichen, seelischen und emotionalen Problemen zurückzuführen ist, mit denen sich die Kinder konfrontiert sehen. Spina bi da in Verbindung mit Hydrocephalus kann bei mindestens einem Drittel der betro enen Kinder zu Einschränkungen der kognitiven Funktionsfähigkeit führen. Dazu zählen auch Aufmerksamkeits- und Konzentrationsschwierigkeiten (20) die, sofern verfügbar, besondere Bildungsressourcen erfordern (17, 21, 22). Zudem leiden manche junge Erwachsene mit Spina bi da laut jüngster Studien auch an Depressionen und Angst, was ebenso zu schlechten schulischen Leistungen beiträgt (23). Trotz all dieser Herausforderungen hat eine Längsschnittstudie zu Kindern mit Spina bi da in den USA ergeben, dass fast die Häl e aller betroffenen Kinder erfolgreich eine Hochschulausbildung absolviert (24). Dies belegen auch Daten, die darauf hindeuten, dass die Quote der Schulabbrüche stark abnimmt in der Phase, in der vermehrt in diese Kinder in den USA investiert wurde (25). Für die meisten querschnittgelähmten Kinder und jungen Erwachsenen besteht die Herausforderung darin, den Wiedereinstieg in die Sekundarbildung und postsekundäre Bildung zu meistern. Abgesehen von stichprobenartigen
Forschungsbestrebungen in Europa und den USA (26 –29), gibt es kaum zuverlässige Informationen zum allgemeinen Erfolg oder Scheitern der Schullau ahn von Kindern mit QSL im Vergleich zu Kindern mit anderen Behinderungen oder der Allgemeinbevölkerung. Qualitative Forschungsarbeit im Vereinigten Königreich hat gezeigt, dass die Rückkehr in die Schule auch ein traumatisches Erlebnis sein kann (30). Die Rückkehr war am erfolgreichsten, wenn sie so früh wie möglich erfolgte – vorzugsweise noch während das Kind die Rehabilitation im Krankenhaus durchlief. Alle Schüler gaben an, dass die Hauptprobleme durch die physische Zugänglichkeit und die mangelnde Ausbildung des Personals im Hinblick auf die Erfüllung der Bedürfnisse des Kindes verursacht wurden. Letzteres bezieht sich auf die vollständige Teilhabe an sämtlichen schulischen Aktivitäten, darunter auch sportliche Aktivitäten und Aus üge. Der Übergang zur postsekundären Bildung an Universitäten und Fachhochschulen scheint in der Regel eine geringere Herausforderung zu sein. Dies ist wahrscheinlich darauf zurückzuführen, dass die Studenten reifer sind, mehr Erfahrung in Bezug auf ihre QSL sammeln konnten und ihre Bedürfnisse kennen. Beispielsweise besuchen in den USA 45% der jungen Erwachsenen mit mobilitätsbedingten Beeinträchtigungen nach der Sekundarstufe ein College oder eine Universität – verglichen mit 53% der studentischen Allgemeinbevölkerung (31). Eine Studie hat ergeben, dass 82% der Teilnehmer ein College besuchten (32). Die United States National Longitudinal Transition Study 2 kam zu ähnlichen Ergebnissen, zeigte aber einen Unterschied im Vergleich zu den 77% der blinden und tauben Studenten, die eine Hochschulausbildung absolvieren (31). In Europa sind die Zahlen vergleichbar, wenn auch die Zahl der College-Studenten mit Mobilitätsbeeinträchtigung in den vergangenen Jahren zurückgegangen ist (33).
199
Querschnittlähmung – Internationale Perspektiven
Barrieren im Bereich Bildung abbauen Um die unzähligen Barrieren im Bereich Bildung zu verstehen, denen Kinder und Erwachsene mit QSL gegenüberstehen, ist es wichtig, zunächst drei Gruppen zu unterscheiden: Kinder mit Spina bi da, Kinder und junge Erwachsene, die nach der Rehabilitation wieder in die Schule zurückkehren und Erwachsene, die eine Ausbildung, Weiterbildung oder ein Studium beginnen, um Fähigkeiten und Wissen für neue Beschä igungsmöglichkeiten nach der QSL zu erwerben.
Gesetzgebung und Politik Artikel 24 der BRK liefert deutliche und detaillierte Richtlinien dazu, was im Bereich der Gesetzgebung und Politik sowie der Planung nötig ist, um das Recht auf Bildung auf allen Ebenen und für alle Menschen mit Behinderung umzusetzen (1, 12). In einigen Ländern mit hohem Nationaleinkommen werden die Grundsätze der schulischen Integration mithilfe der bestehenden Gesetzgebung und Politik umgesetzt. Hierzu zählen allgemeine Vorkehrungen zur Antidiskriminierung, wie das Disability Discrimination Act im Vereinigten Königreich, mit dem Ziel, individuelle Anliegen der schulischen Ausgrenzung in Angri zu nehmen. Jedoch ist die Gesetzgebung wirkungsvoller, wenn sie proaktiv umgesetzt wird. In Dänemark beispielsweise schreibt die Gesetzgebung vor, dass das Bildungsministerium Ausgleichsbeihilfen zur Verfügung stellen muss, die Menschen mit Behinderung benötigen, um den gleichen Bildungsweg zu durchlaufen, wie ihre Altersgenossen, umso akademisch erfolgreich zu sein. In Frankreich müssen Hochschulen positive Maßnahmen ergreifen für Studenten mit Behinderungen und die akademische Ausbildung sowohl physisch also auch pädagogisch anpassen (33).
In Ländern mit niedrigem und mittlerem Nationaleinkommen gibt es häu g rechtliche Barrieren, darunter auch Gesetze, die explizit erlauben, dass Kindern mit Behinderung der Zugang zu Bildung verwehrt wird (34 –36). Die UNESCO ist zu dem Schluss gekommen, dass das größte Hindernis für integrative Bildung in diesen Ländern das Fehlen eines rechtlichen und politischen Rahmens ist, der die integrative Bildung fördert (37). Selbst in Ländern wie Südafrika, in denen die Regierung die Initiative ergri en und Hindernisse im Bereich der uneingeschränkt zugänglichen Bildung ausgemacht hat, sind die Fortschritte gering, da die rechtliche Grundlage und nanzielle Planung fehlen (38). Top-down Ansätze beziehen nicht die Situation vor Ort in ländlichen Gemeinden mit ein und sind somit meist nicht erfolgreich (39). Die Länder müssen praktische Schritte verfolgen, um den Weg zu ebnen für eine tragfähige Bildungspolitik und allgemeine Zusagen machen für das Recht auf Bildung von Kindern mit Behinderung. Zu diesen Schritten zählen: Die Feststellung der Anzahl der behinderten Kinder sowie ihrer Bedürfnisse; die Entwicklung von Strategien, um Schulgebäude zugänglich zu machen und die Überarbeitung von Lehrplänen, Unterrichtsmethoden und Unterrichtsmaterialien, um diese Bedürfnisse zu erfüllen. Zudem muss das Bildungsangebot ausgebaut werden, zum einen durch die Ausbildung von Lehrkrä en in Bezug auf die Bedürfnisse von Kindern mit Behinderung und zum anderen durch die Nutzung der Ressourcen von Eltern und Gemeinden. All diese Maßnahmen müssen durch eine angemessene und ausreichende Finanzierung unterstützt werden (36).
Unterstützung für Kinder mit Spina bifida Fast die Häl e der Kinder und jungen Erwachsenen, die an einer Myelomeningozele mit Hydrocephalus leiden, werden mit hoher Wahrscheinlichkeit spezielle Bildungsprogramme
200
Kapitel 8
Bildung und Beschäftigung
durchlaufen und schlechte Bildungsergebnisse erzielen, während die andere Häl e ähnliche Resultate erzielt, wie Schüler ohne Behinderung (17). Die Herausforderung besteht darin, Bedingungen innerhalb des normalen Schulumfelds zu scha en, die das Lernen für alle Kinder mit Spina bi da optimieren. Trotz der medizinischen Probleme, für die Kinder mit Spina bi da anfällig sind (z.B. Krampfanfälle und Harn- und Stuhlinkontinenz), ist es in gut vorbereiteten und gut ausgestatteten Bildungseinrichtungen möglich, dass diese Schüler die Grundschule und Sekundarbildung durchlaufen und dieselben Abschlussquoten erzielen, wie Kinder der restlichen Bevölkerung (24, 40). Es ist mehr Forschung nötig um festzustellen, wie man ein unterstützendes Umfeld für Kinder mit Spina bi da scha . Zudem muss am Selbstbewusstsein und der Unabhängigkeit dieser Kinder gearbeitet werden (41). Im Rahmen eines einwöchigen Lagers wurde eine klein angelegte Studie durchgeführt zur Einführung des Selbstmanagements, der Zielentwicklung sowie der Entwicklung von anderen Fähigkeiten für ein unabhängiges Leben. Hier hat sich gezeigt, dass Bemühungen zur Überwindung des mangelnden Selbstvertrauens sehr erfolgreich sein können (42). Die meisten Spina bi da-Kinder können erfolgreich Regelschulen besuchen und dabei gute Ergebnisse erzielen. Daher müssen Lehrer, Verwaltungspersonal und Eltern an einem Strang ziehen, um diesen Kindern dabei zu helfen, eine innere Motivation und Unabhängigkeit zu entwickeln – dies dient als Fundament für den Au au positiver sozialer Beziehungen in Regelschulen (43, 44). Obwohl die Situation für Kinder mit Spina bi da in den ärmsten Ländern der Welt extrem schwierig sein kann, wurden in Ostafrika Fortschritte erzielt, indem man die Unterstützung der Gemeinscha und die Eltern unter Berücksichtigung der Kultur zusammengeführt hat (45).
Rückkehr in die Schule nach der Verletzung Eine Rückkehr in die Schule so früh wie möglich nach Verletzung muss das Hauptziel der Rehabilitation sein. Auch der Einsatz für die Kontinuität der Ausbildung muss Teil des Zielsetzungsprozesses während der Rehabilitation sein (26, 32, 46, 47). Bildung wird schon seit jeher in Verbindung gebracht mit mehr Teilhabe an der Gemeinscha , Beschä igung, einem unabhängigeren Leben und mehr Lebenszufriedenheit bei Erwachsenen, die im Grundschul- oder Teenageralter eine QSL erlitten haben (48, 49). Die beste Option für jedes Kind ist der Besuch einer Regelschule. Die zweitbeste Option ist Heimunterricht oder Einzelunterricht allein oder zusätzlich zum normalen Unterricht in der Klasse. Diese Möglichkeit sollte jedoch nur in Betracht gezogen werden, wenn das querschnittgelähmte Kind mehr Unterstützung beim Lernen braucht oder häu g den Unterricht aufgrund von Physio- oder Ergotherapie verpasst (29). Eine kürzlich durchgeführte Studie über die schulischen Erfahrungen von querschnittgelähmten Kindern in London (30) de nierte die folgenden Erfolgsfaktoren: ■ Früher Kontakt zwischen Kind, Eltern und Schulpersonal mit Einbindung von Rehabilitationsfachleuten; ■ Anpassungen und Vorkehrungen, die vor der Rückkehr des Kindes geplant und vorgenommen werden. Weiterhin muss –ohne zu stigmatisieren– sichergestellt werden, dass alle Bereiche der Schule zugänglich sind; ■ Alle Aktivitäten müssen zugänglich sein – dadurch stellen Vertreter der Schule sicher, dass der jeweilige Schüler in sämtliche Schulaktivitäten mit einbezogen wird; dazu zählen insbesondere auch Sportstunden (50) und Schulausflüge; ■ Aufklärung über das Thema QSL und damit verbundene Gesundheitsprobleme vor Ort für alle Mitarbeiter. Dies muss einhergehen 201
Querschnittlähmung – Internationale Perspektiven
mit altersgerechten Aufklärungsprogrammen für Mitschüler, um die Akzeptanz des Anderen zu fördern. Diese und ähnliche Studien (29, 32, 51) haben bestätigt, dass Mechanismen für Schüler und ihre Eltern nötig sind, um Bedenken zu äußern und Probleme in informellem Rahmen zu lösen (z.B. Abendveranstaltungen) und zwar bevor der Schüler die Schule besucht. Rehabilitationsfachleute sollten an diesen Veranstaltungen teilnehmen, denn es gibt Hinweise darauf, dass ihre Ermutigung ein entscheidender Faktor für den erfolgreichen Wiedereinstieg des Kindes in den Schulalltag und die Teilhabe am Schulleben ist (52, 53). Auch Peer-Mentoring-Programme haben sich als gute Möglichkeit erwiesen, junge Erwachsene zur Wiederaufnahme ihrer Ausbildung nach der Verletzung zu ermutigen (54). Übertriebene Fürsorge sollte verhindert werden (30).
Übergang nach der Schulzeit Für Kinder mit Behinderung ist der Übergang von der Schule zur postsekundären Bildung beschwerlicher, als für andere Kinder. Dies liegt an den Herausforderungen in Zusammenhang mit den Vorkehrungen und der Anpassung an ein neues Umfeld und eine neue Situation. Menschen, die Unterstützung von verschiedenen Seiten erhalten, meistern die Anpassung an den Übergang besser, als diejenigen ohne Unterstützung (25). Die Verfügbarkeit von angemessenen unterstützenden Technologien ist ebenso wichtig für einen reibungslosen Übergang (55). Die Eltern können beim Übergang eine wichtige Rolle in Bezug auf Motivation und Au au des Selbstbewusstseins spielen. Peer-Mentoring-Programme zielen darauf ab, der Traumatisierung von querschnittgelähmten Kindern beim Übergang entgegenzuwirken (54). Web-basierte Ressourcen, die die Familie und das Kind zusammen nutzen können, um Selbstvertrauen und Unabhängigkeit zu fördern (41)
sind vielversprechende Möglichkeiten zur emotionalen und psychologischen Vorbereitung. In seinem Sommerbericht 2004 (56), hat das United States National Center on Secondary Education and Transition (NCSET) einige mögliche Lösungsansätze für die größten Herausforderungen in der Übergangszeit zusammengefasst. Diese sind: ■ Selbstbestimmung und Durchsetzungsvermögen des Schülers fördern durch die Lehrplanaufnahme von Unterrichtseinheiten zur Entwicklung von Fähigkeiten für die berufliche Entwicklung ■ Sicherstellen, dass Schüler Zugang zu Bildung gemäß dem allgemeinen Lehrplan haben, indem Klassenzimmer, Lehrpläne und Beurteilungen gemäß den Prinzipien des universellen Designs gestaltet werden, um sie für so viele Schüler wie möglich zugänglich zu machen, ohne dass zusätzliche Vorkehrungen oder Veränderungen notwendig sind; ■ Die Abschlussquoten von Schülern mit Behinderung erhöhen, durch die Entwicklung neuer Methoden und Verfahren zur Identifizierung und Dokumentierung forschungsbasierter Informationen über bewährte Methoden in Bezug auf die Vermeidung von Schulabbruch und in Bezug auf Interventionen; ■ Informierte Eltern stärker in die Bildungsund Lebensplanung sowie den Entscheidungsprozess einbeziehen; ■ Methoden anwenden, wie etwa kombinierter Unterricht von Lehrern an Regelschulen und Lehrern an Sonderschulen, um die Zusammenarbeit zwischen Regel- und Sonderschulen zu fördern im Bereich der Beurteilungen, der Planung des Einzelunterrichts und des Unterrichts selbst. Ein OECD-Bericht zu Problemen beim Übergang zu Universitäten und Fachhochschulen gibt an, dass für den Übergang von der
202
Kapitel 8
Bildung und Beschäftigung
Sekundarbildung zur tertiären (oder höheren) Bildung eine Zusammenarbeit beider Ebenen nötig ist (33): ■ Sekundarschulen müssen Beratung und andere Ressourcen zur Verfügung stellen, die sich als überaus wirksam herausgestellt haben (57 ). ■ Fachhochschulen und Universitäten müssen ihre Zulassungsverfahren und Bildungsvorkehrungen überdenken, um Studenten mit Behinderung den Zugang zum Studium sowie Erfolg im Studium zu ermöglichen. Der Übergang sollte sowohl zentral durch einen universitätsweiten Unterstützungsdienst für behinderte Studenten, als auch innerhalb der entsprechenden Fakultät koordiniert werden. Zudem sollten Anpassungen vorab geplant werden. Zu den nötigen Anpassungen zählen Notizschreiber, Tutoren, technische Hilfsmittel, physische Anpassungen im Bereich der Klassenzimmer sowie Unterstützung für ein unabhängiges Leben (31, 58, 59). Was die Länder mit niedrigem und mittlerem Nationaleinkommen betri , so wurde 2006 in Form des Consortium for Research on Educational Access, Transitions and Equity (CREATE) eine Partnerscha zwischen Forschungseinrichtungen in Bangladesch, Ghana, Indien, Südafrika und dem Vereinigten Königreich aufgebaut. Die erste CREATE-Monogra e enthielt eine Forschungsagenda zu einer Klassi kation der „Ausschlussbereiche“ von Kindern mit Behinderung. Diese reichte vom völligen Ausschluss bis hin zum Besuch einer Sekundarschule, verbunden jedoch mit dem Risiko eines frühzeitigen Abbruchs. Zudem sprach sich die Monogra e für bildungspolitische Konzepte aus, die auf diese unterschiedlichen Situationen ausgerichtet sind (60). Eine daran anknüpfende Monogra e betonte die besonderen Lehrherausforderungen sowie potenzielle strategische Maßnahmen in ganz Afrika (14) und machte deutlich, wie geschlechtsspezi sche Benachteiligungen Kinder mit QSL vor noch größere Herausforderungen stellen.
Physische Barrieren abbauen Wissenscha liche Studien haben gezeigt, dass Barrieren im Bereich der grundlegenden Mobilität entscheidende Faktoren sind, die der Teilhabe von Schülern mit Paraplegie in Südafrika (61) und Kindern mit Spina bi da in Malaysia (62) im Weg stehen. In der Vereinigten Republik Tansania ist der Zugang schwierig, da viele Schulen erhöht gebaut wurden, um sie in der Regenzeit besser zu schützen. Zudem sind im Inneren der Schulen Toiletten nicht zugänglich und Türen o nicht breit genug für Rollstühle (63). Im Vereinigten Königreich hat eine Studie gezeigt, dass Barrieren wie Stufen oder zu steile Rampen sowie fehlende angemessene Toiletten und Behindertenparkplätze, Schülern im Rollstuhl den Zugang zu Klassenzimmern, Speisesälen, Bibliotheken und Sportanlagen versperrten (30). Umwege und Verzögerungen verhindern, dass die Schüler den Unterricht rechtzeitig erreichen (64). Unzugängliche Transportmittel sind vor allem belastend für Kinder mit Mobilitätsschwierigkeiten, die nicht allein zur Schule gehen können, da diese zu weit entfernt ist, oder aufgrund von unebenen ländlichen Wegen oder über uteten Straßen während der Regenzeit (61). Viele dieser Barrieren können durch bessere politische Konzepte und Planung überwunden werden (33, 65, 66). Auch wenn die Ressourcen begrenzt sind, ist es möglich etwas zu verändern, indem man die Beseitigung physischer Barrieren über einen bestimmten Zeitraum hinweg zur Priorität macht. Dies geschieht aktuell auch in Kenia – hier plant die Regierung 2015 mit dem Bau von Rampen und anderen Vorkehrungen in den lokalen Schulen zu beginnen (67). 2003 rief die Stadt Lissabon in Portugal ein Programm namens Escola Aberta („o ene Schule“) ins Leben, das auch eine umfassende Strategie zur Beseitigung physischer Barrieren in Grundschulen beinhaltete (68).
203
Querschnittlähmung – Internationale Perspektiven
Angemessene Vorkehrungen Obgleich die Bedürfnisse sehr unterschiedlich sind, ist es einigen Kindern mit QSL nur möglich das nötige Maß an Unabhängigkeit, das ein Schulbesuch erfordert, zu erreichen und alle Vorzüge von Bildung zu genießen, wenn einige Vorkehrungen getro en werden. Dies kann ein Unterrichtsassistent sein oder eine Form von unterstützenden Technologien. Hierzu zählen Geräte mit geringem Technologiegehalt, wie etwa Sti halter oder hochtechnologische Hilfsmittel, wie etwa Systeme zur optischen Zeichenerkennung oder ein technisch sehr anspruchsvoller Roboterarm für Kinder, die nur eingeschränkt Kontrolle über ihren Oberkörper haben (69). All dies kann die Leistung und Teilhabe eines Kindes im und am Unterricht verbessern oder überhaupt erst ermöglichen. Als beste Informationsquelle dafür, was nötig ist und welche Technologien tatsächlich funktionieren, gilt die Erfahrung von Menschen, die diese Hilfsmittel benutzen. Ein kanadisches Projekt liefert einen Diskussionsleitfaden, der Betro enen helfen soll, Informationen über verschiedene Lösungen im Bereich der unterstützenden Technologien auszutauschen (70). Gleichzeitig wird es Menschen ermöglicht, die erst seit kurzem mit einer Behinderung leben, sich mit diesen emen zu befassen. Obwohl Computer und andere Technologien ein großer Vorteil für Kinder mit QSL sind, ist häu g ein gut ausgebildeter Lehrer oder Unterrichtsassistent nötig, der dem Kind bei der Nutzung hil (29, 71).
Bildung und Vorkehrungen finanzieren Vorkehrungen – egal ob es sich dabei um Hilfsmittel oder unterstützendes Personal handelt –erfordern eine sichere Finanzierung. In Ländern mit hohem Nationaleinkommen gibt es zahlreiche potentielle Finanzierungsquellen, die für Schüler und Studenten mit Behinderung eingerichtet wurden. Hierzu zählen beispielsweise 204
staatliche Beihilfen oder Bildungskredite, staatliche Stipendien und zusätzliche Finanzmittel, Universitätsstipendien, private Bildungsfonds und Stipendien und private Versicherungen (33). In den USA wurden 78% des Budgets zur Unterstützung der tertiären Bildung von Menschen mit Behinderung zur Finanzierung von Stipendien und Krediten für behinderte Menschen verwendet (33). Zudem gibt es eine Reihe bundesstaatlicher Pläne zur Finanzierung von unterstützenden Technologien im Bildungsbereich (72). Im Vereinigten Königreich ermöglicht die Disabled Students Allowance direkte, steuerfreie Zahlungen für spezielle bildungsrelevante Hilfsmittel, persönliche Assistenten und zusätzliche Reisekosten (73). In Irland erhalten die Colleges und Universitäten staatliche Mittel, die sie dann an Studenten weitergeben müssen (74). Ein weiterer Ansatz ist die Sicherstellung, dass die Zusatzkosten eines Studenten mit QSL durch Einzeldarlehen oder Teilstipendien gedeckt werden, die von Fall zu Fall gewährt werden, wie in Frankreich und Norwegen, wo diese Darlehen in nicht rückzahlbare Zuschüsse umgewandelt werden, sollte der Absolvent nicht in der Lage sein, den Kredit zurückzuzahlen (33). In Ländern mit geringem Nationaleinkommen gibt es kaum gesonderte Finanzierungsvereinbarungen für Schüler und Studenten mit Behinderung. Obwohl Studien gezeigt haben, dass die Integration behinderter Kinder in Regelschulen kostene zient ist – selbst unter Berücksichtigung der Zusatzkosten durch die Vorkehrungen (siehe Studienauswertung (75)) - können viele Länder diese potentiellen Einsparungen nicht nutzen. Grundsätzlich haben Länder mit niedrigem Nationaleinkommen aber wenigstens den Vorteil, dass sie sehen können, welche der Finanzierungsstrategien in Ländern mit hohem Nationaleinkommen funktioniert haben und welche nicht (76). In Uganda hat man beispielsweise Komponenten verschiedener integrativer Ansätze zur Bildungs nanzierung aus Europa und den USA übernommen, um ein gutes Ergebnis für behinderte Kinder im Land
Kapitel 8
Bildung und Beschäftigung
zu erzielen (37). Die Übernahme von Finanzierungsstrategien aus Ländern mit hohem Nationaleinkommen ist vielleicht nicht immer die beste Lösung. In ländlichen Gebieten ist das Hauptziel der Bildung aber, die Menschen mit Behinderung auf Leben und Arbeit in ihrem Umfeld vorzubereiten – dies kann bedeuten, dass die beste Finanzierungsstrategie diejenige ist, die die Bedürfnisse dieses Umfeldes am meisten berücksichtigt (39).
die nur begrenzt in die vielfältigen Bereiche des Lebens mit Behinderung investieren können. Das National Resource Centre for Inclusion in Indien ist Teil der gemeinnützigen Organisation Able Disabled All People Together (ADAPT) und be ndet sich in Mumbai. Das Zentrum bietet bereits seit 1972 Unterstützung und Mentoring für Kinder mit Behinderung.
Soziale Unterstützung Die Unabhängigkeit aller jungen Menschen, die sich in der Sekundar- oder höheren Bildung be nden, hängt in der Regel vom Netzwerk sozialer Unterstützung durch Familie, Freunde, Mitschüler und Kommilitonen ab. Eine QSL ist ein einschneidendes Erlebnis, das dazu führen kann, dass ein junger Mensch den Kontakt zu Freunden verliert. Die Zeit, in der ein Schulbesuch nicht möglich ist, kann zu einer allgemeinen Loslösung von der Gesellscha führen. Soziale Unterstützung ist ein bestimmender Faktor für die Lebenszufriedenheit, Gesundheit und sogar Sterblichkeit von Menschen mit QSL (77). Informelle Mentoren-Programme haben sich als sehr hilfreich erwiesen für Kinder mit QSL bei der Rückkehr in die Schule und das gesellscha liche Leben (54, 59). Auch die Interaktion mit anderen Betro enen im selben Alter ist besonders wichtig (78). Interessenverbände, QSL-Unterstützergruppen und NGOs sind wichtige Bestandteile eines sozialen Netzwerks, das durch den Austausch gemeinsamer Erfahrungen eine wichtige Rolle spielen kann bei der Unterstützung der Schüler und Studenten und ihrer Familien. Im Vereinigten Königreich organisiert der Back Up Trust ein Mentorenprogramm für querschnittgelähmte Menschen. Hier wird jedem Betro enen, der Rat braucht in Bezug auf die Anpassung an das Leben mit QSL, die Rückkehr in die Schule und andere emen ein Mentor zugeteilt (79). Eine ähnliche Rolle spielen auch andere Gruppen in anderen Ländern – darunter auch einige
Einstellungsbedingte Barrieren abbauen Die Barrieren, mit denen Kinder und junge Erwachsene bei der Rückkehr zur Schule nach der Rehabilitation oder beim der Einschulung mit Spina bi da oder pädiatrischer QSL konfrontiert werden, sind nicht nur physischer und institutioneller Natur, sondern hängen auch von der Einstellung ab. Erfolgreiche Teilhabe an Bildung setzt voraus, dass Ignoranz und Vorurteile in Bezug auf QSL abgebaut werden. Kinder und junge Erwachsene mit QSL und ihre Familien müssen ebenso über QSL aufgeklärt werden und auch darüber, was sie bei der Rückkehr in die Schule oder beim Übergang von Sekundar- zu Hochschulbildung erwartet.
Schüler mit Querschnittlähmung und ihre Familien
Wenn Kinder mit QSL über die Rückkehr in die Schule nachdenken, machen sie sich vielleicht Sorgen, dass ihre Mitschüler sie nicht akzeptieren. Daten belegen, dass einige Kinder Schwierigkeiten damit haben mit der QSL umzugehen und unter Symptomen von schlechter Anpassung, Angst und Depression leiden (23, 80) oder sogar unter Kontrollverlust (81). Wird dem nicht entgegengewirkt, kann dies zu verstärkter Isolation, Einsamkeit, Mangel an Freunden und Zukun sangst führen, was wiederum schlechtere Ergebnisse im Bereich Bildung nach sich zieht (27). Querschnittgelähmte Kinder, die in die Schule zurückkehren, müssen über Besonderheiten der Schule aufgeklärt werden und ebenso über regelmäßige Aktivitäten, an denen 205
Querschnittlähmung – Internationale Perspektiven
sie teilnehmen werden – d.h. über Dinge, die ihnen wichtig sind und nicht etwa den Eltern oder Lehrern (51). Dies bedeutet, dass Informationen von Kindern mit QSL über Dinge, die sie wissen sollten, für die betro enen Kinder vielleicht wichtiger sind, als das, was Eltern, Lehrer und andere Fachleute für wichtig halten. Später in ihrer Schullau ahn benötigen Schüler mit QSL – ebenso wie ihre Altersgenossen – Unterstützung und Berufsberatung, die ihnen den Übergang zur höheren Bildung und später zur Beschä igung erleichtern (53). Kinder mit QSL und ihre Familien können von webbasierten Ressourcen pro tieren, die grundlegende medizinische Informationen zu QSL oder Spina bi da zur Verfügung stellen – darunter auch insbesondere praktische Informationen zum ema Selbst-Management (41). QSL-Unterstützergruppen gibt es in vielen Ländern. Sie teilen Informationen und gemeinsame Anliegen, die wichtig sind für die Familien. Eltern sind verständlicherweise besorgt in Bezug auf die Sicherheit ihres Kindes in der Schule oder darüber, ob ihr Kind von den Mitschülern akzeptiert werden wird (27). Da übermäßige Fürsorge aber zur weiteren Ausgrenzung von Kindern mit QSL führen kann (26), sollte Eltern durch Rehabilitationsfachleute und Lehrer geraten werden, Gruppen aufzusuchen, die ihre Ängste abbauen und sie unterstützen können.
Die Einstellungen von Schulleiter und Lehrern sind wichtig, um ein integratives Umfeld zu ermöglichen und zu verwalten. Einstellungen können durch gut geplante Informationen und Unterstützungsstrategien positiv beeinusst werden (39, 50, 61, 82). Lehrer sind in der Regel positiver gegenüber Schülern mit körperlichen Behinderungen eingestellt, als gegenüber Schülern mit geistigen Behinderungen (83). Sehr grundlegende Au lärungsprogramme zum ema „Behinderung“, die sich an Lehrer, Verwaltungspersonal und Schüler richten, sind laut 206
Lehrer, Verwaltungspersonal und Mitschüler
vorhandener Literatur fast ebenso wichtig für eine erfolgreiche gesellscha liche Integration wie ein angepasstes Umfeld (84). Dies hat sich in Botswana und im Libanon bestätigt (85, 86). Beispielsweise bietet das Center for Assistive Technology and Environmental Access am Georgia Technology College of Architecture in den USA kostenlose Online-Kurse für Mathematik- und Naturwissenscha slehrer an High-Schools an, so dass diese aufgeklärt werden über Vorkehrungen im Klassenzimmer, angepasste Prüfungen und Labore, unterstützende Technologien sowie Gesetze und politische Maßnahmen (70). Angesichts des mangelnden Verständnisses darüber, was QSL bedeutet oder wie man Menschen mit QSL unterstützen kann, würden sowohl Lehrer als auch Schüler von grundlegenden Informationen über Behinderung im Allgemeinen und QSL im Besonderen pro tieren. Es gibt leicht zugängliche Ressourcen, die sowohl für grundlegende Informationen zu Behinderung im Klassenzimmer als auch insbesondere zu speziellen emen über QSL genutzt werden können. Die UNESCO hat beispielsweise eine Reihe von Werkzeugen zur Erscha ung von lernfreundlichen Umgebungen erarbeitet (87). Darüber hinaus bietet die OECD Ressourcen an, die die einzelnen Schritte beschreiben, die Lehrer, Schulverwaltung und Schüler unternehmen müssen, um Vielfalt in der schulischen Umwelt zu fördern (88). Lehrer spielen eine direkte und entscheidende Rolle bei der Verwirklichung eines inklusiven Bildungssystems. Dies gilt insbesondere für Sportlehrer, die häu g mit der Herausforderung konfrontiert werden, ein Kind mit schweren Beeinträchtigungen in den normalen Sportunterricht zu integrieren. Dabei gilt es, das Ziel der Integration, der Bewegung gemäß der eingeschränkten Funktionsfähigkeit, und Sicherheitsbedenken zu vereinen. Eine schwedische Studie hat gezeigt, dass diese Herausforderung erfolgreich gemeistert werden kann durch angemessene Ausbildung, Unterstützung von Seiten der Schulverwaltung und angemessene Ressourcen
Kapitel 8
Bildung und Beschäftigung
(50). Bei der Bevölkerung wächst die Einsicht, dass Ausbildungsstätten für Lehrer sicherstellen müssen, dass neue Lehrer so ausgebildet werden, damit sie auch Klassen mit behinderten Schülern e ektiv unterrichten können (89). Ebenso gibt es Evidenz dazu, dass Lehrer Informationen zur Behinderung des Kindes leichter aufnehmen und diese Information dann nutzen, um die Integration des Kindes in schulische Aktivitäten zu fördern, wenn die Informationen nicht diagnostischer Natur sind (z.B. Kind mit Spina bi da), sondern sich auf die funktionellen Probleme und Vorzüge beziehen, die praktische Hinweise darauf geben, wie das Kind unterrichtet werden muss (83). Normalerweise sind keine grundlegenden, medizinischen Informationen zu QSL erforderlich, mit Ausnahme von Krankheiten wie der autonomen Dysre exie, die für einige Menschen mit QSL lebensbedrohlich sein können (15). Lehrer sollten zudem aufmerksam gemacht werden auf gesundheitliche Probleme in Verbindung mit Spina bi da oder mit einhergehendem SchädelHirn-Trauma (19). Lehrer sollten auch wissen, dass querschnittgelähmte Kinder o für mehr Selbstbestimmung und Unabhängigkeit kämpfen und über diese Probleme möglicherweise nicht ohne weiteres o en reden können (90). Dies ist ein Phänomen, auf das Rehabilitationstherapeuten vorbereitet sein sollten (78). Unterrichtsassistenten, die häu g direkteren Kontakt zu Kindern mit Behinderung in der Grundschule haben, sollten in Bezug auf QSL und ihre Folgen geschult und informiert werden. Dazu zählen auch die emotionalen und psychologischen Auswirkungen (30).
vorgenommen werden. Leider wird vielen Menschen mit Behinderung der Zugang zu Beschä igung und zu Möglichkeiten, ihren Lebensunterhalt zu sichern, verwehrt. Aufgrund dessen leben die Betro enen und ihre Familien in Armut und werden so an den Rand der Gesellscha gedrängt. Dieser Ausschluss ist schwer für Menschen mit QSL – aber es gibt auch noch weitere Gründe dafür, warum dies problematisch ist: ■ Der Ausschluss ist eine Verschwendung wertvoller Arbeitskraft. Schätzungen zum wirtschaftlichen Einfluss von Arbeitslosigkeit und Unterbeschäftigung von Menschen mit Behinderung in repräsentativen Ländern mit niedrigem und mittlerem Nationaleinkommen belaufen sich auf 3-5% des Bruttoinlandsprodukts (91). ■ Beschäftigung ist das wichtigste Rehabilitationsziel von Menschen mit QSL (92), denn sie wirkt sich positiv auf die Anpassung an ein Leben mit QSL aus - ebenso wie auf Lebenszufriedenheit, Zielstrebigkeit, geistige Stimulation, soziale Kontakte und das Wohlbefinden (93 –96). ■ Ein geringes Einkommen in Verbindung mit Arbeitslosigkeit oder Unterbeschäftigung wird mit höheren Sterblichkeitsraten infolge einer QSL in Verbindung gebracht (77, 97) und mit einem allgemein schlechteren Gesundheitszustand (93, 98–100). Eine vor kurzem durchgeführte, systematische Analyse von 50 Studien zu QSL und Arbeitslosigkeit ergab eine durchschnittliche weltweite Beschä igungsquote von Menschen mit QSL von nur 37%, obwohl 68% zu einem Zeitpunkt nach Eintreten der QSL in einem Beschä igungsverhältnis waren (101). Die aktuelle durchschnittliche Beschä igungsquote von Menschen mit Behinderung nach Kontinenten war in Europa am höchsten (51%) und in Nordamerika am niedrigsten (30%). In den OECD-Ländern sind diese Durchschnittswerte vergleichbar mit der Arbeitslosenquote schwerstbehinderter 207
Querschnittlähmung und Teilhabe an Beschäftigung Die meisten querschnittgelähmten Menschen können arbeiten und einen produktiven Beitrag zur Gesellscha leisten, wenn (sofern nötig) angemessene Vorkehrungen am Arbeitsplatz
Querschnittlähmung – Internationale Perspektiven
Menschen (102). Eine weitere Literaturanalyse zum ema Rückkehr an den Arbeitsplatz von Menschen mit QSL aus aller Welt im Zeitraum 2000−2006 hat gezeigt, dass 21- 67% der Betro enen an ihren Arbeitsplatz zurückkehren und die allgemeine Beschä igungsquote zwischen 11,5% und 74% liegt (103). Die großen Unterschiede in beiden systematischen Übersichtsarbeiten sind hauptsächlich auf die unterschiedlichen De nitionen von Beschä igung zurückzuführen. Obwohl es gute Daten zu den Beschä igungsquoten von querschnittgelähmten Menschen in Ländern mit hohem Nationaleinkommen gibt, sind entsprechende Daten in Ländern mit niedrigem und mittlerem Nationaleinkommen rar (104) und zeigen unterschiedliche Beschä igungsquoten. Laut einiger Studien kehrt etwa die Häl e der befragten Menschen mit QSL an ihren Arbeitsplatz zurück: 57% in Malaysia (105), 50% in Bangladesch (106) und 41% in Indien (107). Jedoch ist die Evidenz in anderen Ländern viel schlechter. Eine Folgestudie, an der 136 querschnittgelähmte Patienten des Rehabilitationszentrums in Simbabwe teilnahmen, ergab, dass nur 13% der Befragten (von denen nur einer an Tetraplegie litt) in Beschä igung waren (108). Scheinbar gute Statistiken verschleiern die Tatsache, dass verfügbare Arbeit häu g schlecht bezahlt ist (109). Die Verfügbarkeit von Unterstützung bei der Rückkehr an den Arbeitsplatz ist ein Hauptfaktor in Bezug auf die unterschiedlichen Ergebnisse. Da nicht-traumatische QSL häu g spät eintritt, beziehen sich beschä igungsbezogene Informationen meist auf traumatische QSL. Eine Ausnahme bilden junge Menschen mit Spina bi da, die besonders häu g von Arbeitslosigkeit betro en sind. Obwohl hier nur Informationen aus Europa und den USA vorliegen, lässt sich festhalten, dass die Quoten im Bereich der Vollzeit- oder Teilzeitbeschä igung von jungen Menschen mit Spina bi da zwischen 36 und 41% liegen, verglichen mit 75% bei den Menschen ohne Behinderung (40, 44) oder den Menschen mit anderen schwerwiegenden chronischen Erkrankungen (110). Eine groß 208
angelegte niederländische Studie ergab eine relativ hohe Beschä igungsquote (62,5%), jedoch gingen viele Befragte einer Tätigkeit im Bereich der beschützten Beschä igung nach und waren nicht am allgemeinen Arbeitsmarkt tätig (43). Während es kaum Daten zur Beschä igung von querschnittgelähmten Menschen in Ländern mit niedrigem und mittlerem Nationaleinkommen gibt, wird deutlich, dass selbst in Ländern mit hohem Nationaleinkommen die Arbeitslosigkeit bei Menschen mit QSL sehr hoch ist. Es bedarf mehr Forschungsarbeit zu den Ursachen dauerha er Arbeitslosigkeit. Des Weiteren muss (sofern möglich) unterschieden werden zwischen den Barrieren im Bereich Beschä igung, die in Verbindung mit QSL oder mit Behinderung im Allgemeinen stehen (111).
Barrieren im Bereich Beschäftigung abbauen Es existiert aussagekräftige Evidenz aus Ländern mit hohem Nationaleinkommen hinsichtlich der bestimmenden Faktoren für Beschäftigung sowie der Faktoren, die Menschen mit QSL nach Eintritt der QSL an der Rückkehr in die Beschäftigung oder am Antritt ihrer ersten Arbeitsstelle hindern (96 , 103, 112–115). Das Geschlecht ist kein verlässlicher bestimmender Faktor für Beschä igung (92, 98). Das Alter bei Eintreten der QSL und das Ausbildungsniveau vor der QSL sind jedoch zuverlässige Prädiktoren (48, 98, 116–120). Je jünger, besser ausgebildet und weniger schwer verletzt eine Person ist, desto schneller kann die Person nach der QSL in die Beschä igung zurückkehren und desto wahrscheinlicher wird sie eine Anstellung nden (120, 121). Auch die ethnische Herkun ist ein verlässlicher Ein ussfaktor in den USA: Weiße Menschen nden weitaus häu ger eine Anstellung als andere Bevölkerungsgruppen (81, 120–123). Je schwerwiegender die QSL und je größer die Schwierigkeiten in Bezug auf die
Kapitel 8
Bildung und Beschäftigung
Funktionsfähigkeit, desto geringer sind die Chancen auf einen Arbeitsplatz (48, 98, 117, 124 –127). Für alle Schweregrade der QSL verbessern sich die Beschä igungsraten mit der Zeit (81, 128–130). Dennoch verringern sekundäre Gesundheitsprobleme – vor allem wenn sie einen Krankenhausaufenthalt erfordern – die Chancen einen Arbeitsplatz zu bekommen und zu behalten (100, 122 , 131). Dennoch sind die Hauptbarrieren zu Beschä igung nicht demogra scher, biomedizinischer oder psychologischer Natur – vielmehr stehen sie in Verbindung mit der Umwelt (132). Die Literaturübersicht und Bewertung der vorliegenden Evidenz zu Ein ussfaktoren in Bezug auf die Rückkehr in Beschä igung, die im Rahmen des Spinal Cord Injury Rehabilitation Evidence (SCIRE) Projektes durchgeführt wurden, nennen als bedeutendste negative Faktoren für Beschäftigung Diskriminierung und Unzugänglichkeit im Bereich des Arbeitsplatzes (115). Selbst Studien, die gesundheitliche Probleme wie Abwesenheit von Funktionsfähigkeit zur Ausübung der beru ichen Tätigkeit, mangelnde Ausdauer oder mangelndes Durchhaltevermögen betonen, zeigen, dass diese Probleme nur bestehen, wenn die Art der beru ichen Tätigkeit oder des Arbeitsplatzes nicht angepasst werden kann, um es der querschnittgelähmte Person zu ermöglichen, die bevorzugte Arbeit auszuüben (98, 133, 134). Insgesamt hat Forschung in diesem Bereich immer wieder gezeigt, dass Menschen mit QSL häu g am Arbeiten gehindert werden, weil keine zugänglichen Verkehrsmittel für den Weg zur Arbeit verfügbar sind (43, 103, 115). Dies ist ein weltweites Problem, vor Allem in den ländlichen Gebieten, die seit jeher höhere Arbeitslosenquoten unter Menschen mit QSL aufweisen, als städtische Gebiete (34, 131, 135, 136). Die Ursachen für Arbeitslosigkeit von Menschen mit QSL sind komplex – ebenso wie die Ursachen der mangelnden wirtscha lichen Unabhängigkeit. Die Ergebnisse der Studien sind sehr unterschiedlich und Prognosen
bezüglich der Rückkehr in die Beschä igung und der verfügbaren nanziellen Unterstützung sind schwierig. Denn selbst wenn sämtliche Hürden überwunden sind, die einen jungen Menschen an der Rückkehr in die Beschä igung hindern, können scheinbar banale umweltbedingte oder logistische Hindernisse am Arbeitsplatz eine Rückkehr unmöglich machen (112, 114). Es scheint jedoch vier Kategorien im Bereich der Prädiktoren für Beschä igung und wirtscha liche Sicherheit zu geben. Diese sind: Berufsausbildung und Beschä igungsförderung; falsche Vorstellungen und Diskriminierung von Menschen mit QSL; Vorkehrungen am Arbeitsplatz und die Sicherung wirtscha licher Selbständigkeit.
Berufsausbildung und unterstützte Beschäftigung Die beru iche Rehabilitation verfolgt einen multidisziplinären Ansatz, der darauf abzielt eine Person wieder in die Erwerbstätigkeit zurückzuführen oder ihr die Teilhabe am allgemeinen Arbeitsmarkt zu erleichtern. Dazu zählen in der Regel spezialisierte Leistungen, wie beispielsweise Berufsberatung und –begleitung, Berufsausbildung und Arbeitsvermittlung zur Optimierung der Chancen auf Beschä igung (137). Dies hat sich als überaus wirksam erwiesen in Bezug auf die Rückkehr in die Beschä igung und die erstmalige Vorbereitung auf eine Stelle von Menschen mit Behinderung verschiedenster Art (138, 139). Die funktionelle Genesung dauert nach einer traumatischen QSL bis zu 12 Monate nach dessen Eintreten. Zudem benötigt die betro ene Person noch Zeit, um die medizinischen Bedürfnisse und die Anpassung an die neue Situation innerhalb der Familie und Zuhause zu meistern. Es scheint unrealistisch mit der aktiven, beru ichen Planung während der umfassenden stationären Rehabilitation oder in den ersten Monaten nach der Entlassung zu beginnen (113). Dennoch gibt es sehr deutliche Hinweise dazu, 209
Querschnittlähmung – Internationale Perspektiven
dass die Chancen des Betro enen eine Anstellung zu bekommen und zu behalten am größten sind, wenn mit der beru ichen Rehabilitation früh begonnen wird und sie mit Bemühungen einhergeht, die die Anpassung an das Leben in der Gemeinscha fördern (48, 138, 139). Berufliche Ziele und Erwartungen eines produktiven Lebensstils sollten daher früh in den allgemeinen Rehabilitationsplan integriert werden, als Vorbereitung auf eine spätere und mehr zielgerichtete Berufsberatung (140). Leider sind berufliche Rehabilitation und Berufsberatung selbst in Ländern mit hohem Nationaleinkommen für querschnittgelähmte Menschen nicht immer verfügbar (96, 141). Die Politik muss sich daher hier für den Bedarf an diesen Leistungen einsetzen. Menschen mit QSL benötigen eventuell spezielle Dienste, die sich mit spezi sch ergonomischen und technischen Problemen befassen, denen die Betro enen möglicherweise gegenüberstehen (142, 143). Es gibt auch klare Hinweise dazu, dass im Falle einer QSL die Verfügbarkeit von Arbeitsvermittlungsdiensten durch eine Berufsberatung eine wichtige Rolle spielt. Hierzu zählen insbesondere die Arbeitsplatzsuche und das Knüpfen von Kontakten, die Verfügbarkeit von Stellenanzeigen, deren Anforderungen mit den funktionellen Stärken und Schwächen des Betro enen übereinstimmen, die Vermittlung von Fähigkeiten für eine Bewerbung und die Vorbereitung auf Vorstellungsgespräche (118). Ein wichtiger Teil dieser Dienste ist die Bereitstellung von Informationen zu Beschä igungsmöglichkeiten, um bei der Berufswahl zu helfen. Dazu zählen unter anderem auch beru iche Voraussetzungen und Bildungsvoraussetzungen (94, 143). Der Bedarf an allgemeiner sozialer Unterstützung von querschnittgelähmten Menschen wird als entscheidender Faktor für den erfolgreichen beru ichen Wiedereinstieg angesehen (132). Nach einer traumatischen QSL glauben viele Menschen, dass sie die für die Arbeit notwendigen Aufgaben nicht mehr ausführen können (124, 144, 145). Psychologische Faktoren, angefangen beim Gefühl des Kontrollverlustes 210
über das eigene Leben, über ein vermindertes Selbstwertgefühl bis hin zu Depressionen, können die Rückkehr in die Beschä igung erschweren (146 –148). Schwerwiegende psychische Krankheiten, wie etwa Depressionen, erfordern möglicherweise professionelle Hilfe, aber in den meisten Fällen kann die psychosoziale Unterstützung von anderen Betro enen, Familienangehörigen und engen Freunden große Wirkung zeigen, wenn es darum geht, den Betro enen zur Rückkehr in die Beschä igung zu ermutigen (149, 150). Dies ist besonders in ressourcenarmen Ländern von Bedeutung, in denen informelle Unterstützernetzwerke in der Regel eine wichtigere Rolle spielen (109). Für Kinder und Jugendliche – insbesondere für diejenigen mit Spina bi da – ist es wichtig, dass Berufsberater in ein umfassendes Programm zur Begleitung während des Übergangs von der Schule in die Beschä igung integriert werden. Obwohl das oberste Ziel, die Entwicklung von Strategien ist, die in der Zukun zu Beschä igung führen, liegt das Hauptaugenmerk für gewöhnlich darauf, junge Menschen zum Schulabschluss zu bringen, so dass sie eine Chance auf Beschä igung haben (26, 54). In Ländern mit hohem Nationaleinkommen gibt es zwei grundlegende Arten von Programmen zur beru ichen Rehabilitation, um die Herausforderung zu meistern, Menschen mit schwerwiegenden verletzungsbedingten Behinderungen, wie etwa einer QSL, den Wiedereinstieg ins Arbeitsleben zu ermöglichen. Übergangsprogramme bieten aufeinander abgestimmte Dienste an, die darauf ausgerichtet sind, Menschen dabei zu helfen wettbewerbsfähige Arbeitsplätze zu bekommen und zu behalten. Dies wird auch als „unterstützte Beschä igung“ bezeichnet (143, 151). Der Fokus liegt hier auf beru icher Quali kation, Beratung zum ema Arbeitsmarktfähigkeit und Arbeitsvermittlung, inklusive weiterer Betreuung nach Antritt der Arbeitsstelle durch einen Berufsberater (96, 128, 152, 153). Übergangsprogramme sind von Natur aus ressourcen- und kostenintensiv. Diese
Kapitel 8
Bildung und Beschäftigung
Kosten können aber erheblich gesenkt werden, wenn mit den Leistungen so früh wie möglich begonnen wird und diese in andere Rehabilitationsleistungen integriert werden (96, 137). Das Kaleidoscope Programm zur beru ichen Rehabilitation, das in Kasten 8.1 beschrieben wird, ist ein Beispiel für ein solches Programm im Bereich QSL. Programme der unterstützten Beschä igung bauen auf den Stärken und Fähigkeiten des Arbeitsuchenden auf. Diese Programme bieten maßgeschneiderte Unterstützung zur Erfüllung spezi scher Bedürfnisse bei der Suche nach und Kasten 8.1.
der Auswahl von einem Arbeitsplatz. Zudem bieten sie Unterstützung am Arbeitsplatz und Fürsprache beim Arbeitgeber während der Eingewöhnungsphase. Weiterhin wird auch dauerha e langfristige Unterstützung während der Beschä igung sichergestellt (155). Die Grundidee bei diesem Ansatz sind individualisierte Dienste, da querschnittgelähmte Menschen sich in Bezug auf Funktionalität, beru iche Fähigkeiten, Erfahrung und Anforderungen an die ö entlichen Verkehrsmittel unterscheiden und somit auch verschiedene Vorkehrungen im Bereich der Beschä igung getro en werden müssen.
Kaleidoscope, Burwood Hospital, Christchurch, Neuseeland
Kaleidoscope ist ein frühzeitiges Interventionsprogramm zur beruflichen Rehabilitation, das infolge hoher Arbeitslosenquoten bei Menschen mit QSL ins Leben gerufen wurde. Kaleidoscope basiert auf dem Modell der unterstützten Beschäftigung und zeichnet sich durch folgende vier Punkte aus: 1. Früher Kontakt zu Menschen mit schweren Wirbelsäulenverletzungen und ihren Familien. Dieser erfolgt in der Regel innerhalb der ersten 1-2 Wochen der akuten stationären Versorgung. Wirbelsäulenverletzungen erfordern häufig einen recht langen Krankenhausaufenthalt – Gelegenheit genug, um mit den verletzten Personen und ihren Familien in Kontakt zu treten. Das Hauptziel während dieser Zeit ist selbstverständlich die medizinische Rehabilitation des Betroffenen. Es können jedoch wertvolle Grundsteine für eine spätere Beschäftigung gelegt werden. Gleichzeitig wird so die Erwartungshaltung gefördert, dass eine andauernde Beschäftigung sowohl realistisch als auch wahrscheinlich ist. 2. Detaillierte Planung der beruflichen Laufbahn. Dies ermöglicht es den Menschen, den Weg in die Zukunft selbst zu gestalten, so dass sie motiviert sind, diesem Weg zu folgen. Wenn ein Mensch seine bisherige Arbeit nicht mehr ausüben kann, so ist er vielleicht unsicher, was die Zukunft für ihn bereithält. Die Planung der beruflichen Zukunft eines Menschen auf Grundlage von Motivation, Erfahrung, Fähigkeiten und den unzähligen Beschäftigungsmöglichkeiten die es gibt, helfen, bei der betroffenen Person den Wunsch zu wecken, wieder ein vollständiges und aktives Mitglied der arbeitenden Bevölkerung zu werden. 3. Unterstützung auch nach Antritt der Arbeitsstelle. Diese Art der Unterstützung ist wichtig, um sicherzustellen, dass der Übergang in die Beschäftigung so reibungslos wie möglich verläuft. Eines der Hauptziele hierbei ist die ausreichende Befähigung des Arbeitnehmers, so dass die dauerhafte Unterstützung mit der Zeit eingestellt werden kann. Jedoch sind sich alle Beteiligten darüber im Klaren, dass jederzeit Unterstützung geleistet wird, wenn diese benötigt wird und auch die dauerhafte Unterstützung – falls nötig – wieder zur Verfügung gestellt wird. 4. Eine motivierte und unterstützende lokale Geschäftswelt. Die lokale Geschäftswelt hat Menschen, die nach einer schweren Verletzung oder Krankheit wieder in die Arbeitswelt zurückkehren wollen, enorm viel zu bieten. Kaleidoscope hat ein Netzwerk aus mehr als 40 lokalen Geschäften in einer Vielzahl von Branchen aufgebaut. Die Arbeitgeber haben sich bereiterklärt, im Rahmen von persönlichen Treffen, Informationen über ihre Branche zur Verfügung zu stellen und dabei zu helfen, die richtige Strategie bei der Arbeitsplatzsuche zu bestimmen. Dies wird den Betroffenen dabei helfen, einen Arbeitsplatz in dieser Branche zu finden. Das Oho Ake (“erwachen” und “wachsen”) Programm basiert auf denselben Prinzipien und richtet sich an Menschen mit chronischer QSL, die arbeitslos sind. Quelle (154).
211
Querschnittlähmung – Internationale Perspektiven
Obwohl diese sehr individualisierte Bewertung viel Zeit kostet, belegen zahlreiche Daten, dass dieser Ansatz es nicht nur dem Berufsberater ermöglicht, die Leistungen besser an die individuellen Bedürfnisse anzupassen, sondern auch Menschen mit QSL befähigt, ihr Leben selbst in die Hand zu nehmen (151). Obwohl das Modell der unterstützten Beschä igung hauptsächlich in Ländern mit hohem Nationaleinkommen zum Einsatz kommt, ist eines der erfolgreichsten Beispiele das des Centre for the Rehabilitation of the Paralysed in Bangladesch (vgl. Kasten 8.2). Das Beschä igungsmodell der geschützten Werkstätten ist das zweite der beiden Modelle im Bereich der beru ichen Rehabilitation. Bei diesem traditionellen Ansatz führen Menschen mit schweren Behinderungen bestimmte Aufgaben in einer Werkstatt aus, die von Fachleuten im Bereich der beru ichen Rehabilitation geleitet wird. Diese Option gilt manchmal als die realistischere Lösung für Menschen mit komplexen Bedürfnissen und wird häu g als erster Schritt in Richtung einer Anstellung auf dem freien Arbeitsmarkt angeboten. Kasten 8.3 Kasten 8.2.
liefert ein Beispiel für ein solches Programm, das in Südindien durchgeführt wird. Geschützte Werkstätten, die nicht in direkter Verbindung mit Übergangsprogrammen stehen, die auf eine wettbewerbsfähige Arbeitsstelle abzielen, unterstützen die Ausgrenzung von Menschen mit QSL und gelten daher nicht als optimaler Ansatz zur Umsetzung der Menschenrechte der Betro enen. Beratung durch andere Betro ene (Peer-Counselling) galt lang als wichtiger Bestandteil von Berufsbildungsprogrammen (140). Obwohl frühe beru iche Maßnahmen unter Leitung von Rehabilitationsfachleuten erfolgten, hat die Forschung gezeigt, dass ein hohes Maß an professioneller Unterstützung einen zu starken Eingri darstellen könnte und mehr Koordination nötig ist zwischen den Klienten und den Unternehmen und anderen möglichen Arbeitsstellen. Die Aufgabe von Fachleuten im Bereich der beru ichen Rehabilitation ist es, zwischen Arbeitgeber und Klient zu vermitteln, und jegliche Vorurteile von Arbeitgebern hinsichtlich der Beschä igung von Menschen mit schweren Behinderungen zu zerstreuen
Centre for the Rehabilitation of the Paralysed (CRP) in Bangladesch
Bangladesch ist ein armes Land – fast die Hälfte der 150 Millionen Einwohner lebt unter der Armutsgrenze. Es gibt kein allgemeines soziales Sicherungssystem und die meisten Menschen mit Behinderung erhalten keine finanzielle Hilfe zur Unterstützung hinsichtlich der Ausgaben in Zusammenhang mit der Beeinträchtigung. Das Centre for the Rehabilitation of the Paralysed (CRP) ist eine gemeinnützige Organisation, die auf die Rehabilitation von querschnittgelähmten Menschen spezialisiert ist und 1979 gegründet wurde, um den dringenden Bedarf an Rehabilitationsleistungen für Menschen mit Wirbelsäulenverletzungen zu decken. Seitdem hat sich das CRP zu einer international anerkannten Organisation entwickelt, die eine ganze Palette von Leistungen im Bereich unterstützte Beschäftigung anbietet. Dazu zählen physische und psychologische Rehabilitation, Stellenvermittlungsberatung, berufliche Umschulung, Hilfe beim Erhalt von Mikrokrediten für selbständige Tätigkeiten, geplante Wiedereingliederung in die Gemeinschaft, Schaffung einer sicheren Umgebung im häuslichen Umfeld und Aufklärung der lokalen Bevölkerung in Bezug auf die Bedeutung von QSL und die damit verbundenen Folgen. Der Hauptsitz von CRP befindet sich in Savar. Die Organisation betreibt zudem zwei Zentren für berufliche Umschulung vor Ort (CRP-Gonokbari für Frauen und Mädchen und CRP-Gobindapur für ambulante Patienten und gemeindenahe Dienste) und ein Zentrum für medizinische, therapeutische und diagnostische Dienste in der Hauptstadt Dhaka. CRP leitet zudem 13 gemeindenahe Rehabilitationsprojekte, die sich mit der Prävention von Unfällen und Behinderung befassen und Networking-Aktivitäten zur Unterstützung von QSL-relevanten Anliegen fördern. Zudem organisiert CRB Aufklärungs- und Werbekampagnen, um Barrieren und Stigmata in Bezug auf Menschen mit QSL und anderen Behinderungen zu beseitigen. Quellen (34, 106, 156).
212
Kapitel 8
Bildung und Beschäftigung
(141, 157). Rehabilitationsfachleute sollten die Beschä igungsziele einer Person mit QSL hervorheben, die berufsbezogenen funktionalen Fähigkeiten des Betro enen unter Berücksichtigung der vorhandenen Unterstützungsmöglichkeiten beurteilen und sich darüber im Klaren sein, dass die Planung der beru ichen Lau ahn ein fortwährender Prozess ist, der nicht mit Antritt einer bestimmten Stelle endet (143).
Falsche Vorstellungen von Querschnittlähmung überwinden Falsche Vorstellungen – besonders bei Arbeitgebern und Kollegen – über QSL und die Fähigkeit querschnittgelähmter Menschen, einer wettbewerbsfähigen Beschä igung nachzugehen, wurden o als wichtiger Faktor genannt, der die Beschä igungschancen von Menschen mit Behinderung im Allgemeinen und Menschen mit QSL insbesondere negativ beein usst (114, 124, 140, 152, 158, 159). Einer Studie aus Bangladesch zufolge haben einige Arbeitgeber potenzielle Beschä igte mit QSL meist als „krank“ oder „weniger leistungsfähig“ angesehen (34). In den Niederlanden gaben 57% der jungen Erwachsenen mit Spina bi da an, dass sie aufgrund der negativen Einstellungen seitens der Arbeitgeber Schwierigkeiten haben, eine Anstellung zu nden (43) – ein Ergebnis, das durch ähnliche
Ergebnisse anderer Studien bestätigt wird (25, 41, 160). Eine klassische Studie über Diskriminierung am Arbeitsplatz ergab, dass nichtbehinderte Bewerber 1,78-mal häu ger eingestellt wurden, als ihre behinderten Mitbewerber. Je sichtbarer die körperliche Beeinträchtigung (z.B. durch einen Rollstuhl), desto wahrscheinlicher wird der Arbeitgeber eine Einstellung ablehnen (161). Zur Bekämpfung von Diskriminierung am Arbeitsplatz bedarf es mehr Unterstützung mittels Rechtsvorschri en gegen Diskriminierung. Ebenso ist Rechtshilfe nötig. Gesetze wie der Americans with Disabilities Act 1990 (in der geänderten Fassung von 2007) gibt es immer häu ger überall in der Welt. Eine Studie zur Anwendung dieses Gesetzes im Bereich QSL hat gezeigt, dass querschnittgelähmte Menschen mit ihren Klagen – trotz der sehr niedrigen Erfolgsquote – erfolgreicher sind als Menschen mit anderen Behinderungen (162). Antidiskriminierungsgesetze sind nicht der einzige Weg nach vorne. Forschungsstudien haben gezeigt, dass sich die Einstellung von Arbeitgebern gegenüber Beschä igten mit Behinderung sehr positiv entwickelt – aber diese positive Einstellung zeigt sich noch nicht immer im Bewerbungsverfahren, wenn bestimmte Arbeitnehmer sich um eine Stelle bewerben (163, 164). Eine Folgestudie hat gezeigt, dass
Kasten 8.3.
Geschützte Werkstätten für Veteranen mit QSL in Indien
Es gibt zwei Paraplegie-Rehabilitationszentren in Kirkee und Mohali, mit 109 bzw. 34 Betten, die zur Rehabilitation von ehemaligen Soldaten mit Paraplegie und Tetraplegie dienen. Beide Zentren sind Wohltätigkeitsstiftungen, die vom Kendriya Sainik Board (das Teil der Veteranenabteilung des Verteidigungsministeriums ist) und dem Ministerium für soziale Gerechtigkeit und Befähigung finanziert werden. In diesen Zentren lernen alle Betroffenen im Rahmen einer Berufsausbildung Fähigkeiten wie etwa Weben, Stricken, Schneidern und Kerzenziehen. Sie sind in geschützten Werkstätten vor Ort angestellt und erhalten ein kleines monatliches Gehalt, so dass sie weitestgehend wirtschaftlich unabhängig sind. Die geschützten Werkstätten in diesen Zentren bieten den Betroffenen eine dauerhafte oder befristete Anstellung, da davon ausgegangen wird, dass diese Menschen innerhalb der Gemeinde keine Stelle finden. Die Tätigkeit der ehemaligen Soldaten in der Werkstatt wird als Arbeit angesehen und die Werkstatt als Arbeitsort, den man jeden Tag aufsucht. Die Zentren bieten auch medizinische Behandlung, Physiotherapie, Bewegung, Sport und Computerkurse – dies ermöglicht es den stationären Patienten selbständig zu werden. Quelle (107 ).
213
Querschnittlähmung – Internationale Perspektiven
Arbeitgeber, die bereits Erfahrung mit Menschen mit Behinderung hatten, oder die im Rahmen eines von einem Berufsberater durchgeführten Au lärungsprogrammes über das ema Behinderung informiert wurden, wesentlich bereitwilliger Menschen mit Behinderung einstellten (158). Das lässt darauf schließen, dass die Chancen auf Beschä igung von Menschen mit Behinderung verbessert werden können, wenn die Rehabilitationseinrichtungen aktiv Unterstützung anbieten für Arbeitgeber mit wenig Erfahrung im Bereich Behinderung. Eine aktuelle Studie hat entgegen der Erwartungen ergeben, dass die empfundene Diskriminierung nicht in Verbindung gebracht wurde mit einer geringeren Wahrscheinlichkeit für eine Rückkehr in die Beschä igung. Dies kann darauf hindeuten, dass Menschen mit QSL sich der Diskriminierung und Vorurteile auf Seiten der Arbeitgeber zunehmend bewusster sind und damit auch immer besser umgehen können (145).
Vorkehrungen am Arbeitsplatz sicherstellen Eine erfolgreiche Rückkehr in die Beschä igung hängt auch von den Vorkehrungen am Arbeitsplatz ab (95, 99, 101, 103, 113, 165). Obwohl diese Vorkehrungen bei der physischen Zugänglichkeit beginnen, sind die Bedürfnisse viel weitreichender und beinhalten auch die Einbindung unterstützender Technologien in die Beschäftigung sowie Veränderungen in Bezug auf die Art der Arbeit und den Arbeitsort. Praktische Beispiele QSL-bedingter Vorkehrungen liefern Menschen mit QSL selbst: Im Rahmen einer aktuellen qualitativen Studie, an der 266 Beschä igte mit Mobilitätsbeeinträchtigungen und sensorischen Beeinträchtigungen teilnahmen, wurden 1553 spezi sche und detaillierte Anpassungen ermittelt (166). Es gibt eine Vielzahl von Informationen darüber, wie man den Arbeitsplatz physisch zugänglich gestalten kann – hierzu zählen auch kostenlose Internetquellen, die sehr detaillierte 214
und praktische Informationen liefern, wie etwa das Jobs Accommodation Network (JAN) in den USA. Hierbei handelt es sich um ein Portal mit praktischen Informationen zu innovativen und getesteten Anpassungen für Menschen mit Beeinträchtigungen, darunter auch Menschen mit QSL (167). Seit 2004 hat JAN auch eine Studie unter Arbeitgebern durchgeführt, im Rahmen derer die Kosten und Vorzüge der Anpassungen am Arbeitsplatz bestimmt werden sollten. Dabei wurden die Vorteile für die Arbeitnehmer aufgezeigt und es hat sich herausgestellt, dass diese weit größer sind, als die damit verbundenen Kosten (167). Beispiele für Anpassungen am Arbeitsplatz gemäß den Bedürfnissen von Menschen mit QSL umfassen: Erreichbarkeit des Arbeitsplatzes mit dem Rollstuhl vom Eingang aus (bei allen Wetterlagen) und Erreichbarkeit anderer Bereiche, die für die Ausübung der beru ichen Tätigkeit von Bedeutung sind; breitere Türrahmen und freie Gänge für Rollstuhlfahrer; Anpassungen am Arbeitsplatz, darunter auch höhenverstellbare Schreibtische oder Tische; Zugänglichkeit von Ablagesystemen und anderen Arbeitsbereichen und Zugänglichkeit anderer Räume, wie beispielsweise Toiletten, Konferenzsäle, Essensund Ruheräume (168). Für Beschä igte mit QSL sind die rollstuhlbezogenen Vorkehrungen wichtig. Für die meisten beru ichen Tätigkeiten ist es aber genauso wichtig, Zugang zu unterstützenden Technologien zu haben, mit denen sich Beeinträchtigungen der Funktionsfähigkeit der oberen und unteren Körperhäl e meistern lassen. Eine Studie über Beschä igte mit QSL ergab, dass die Mehrheit behindertengerechte Telefone, Lupen und andere unterstützende Technologien bei der Ausübung ihrer beru ichen Tätigkeit nutzt. Die Befragten gaben an, dass diese Technologien ihre Leistungsfähigkeit und ihr Selbstwertgefühl erheblich steigern (144). Insbesondere haben zahlreiche Studien gezeigt, dass Beschäftigte mit QSL bei der Arbeit häu ger einen Computer benutzen als die Allgemeinbevölkerung
Kapitel 8
Bildung und Beschäftigung
(169–172). Daher ist die Verfügbarkeit und Zugänglichkeit solcher Hilfsmittel wichtig für eine erfolgreiche Rückkehr in die Beschä igung. Für Menschen mit Beeinträchtigungen im Bereich des Oberkörpers sind neue Technologien, wie etwa eine Computermaus, die über die Kop ewegungen gesteuert wird, möglicherweise notwendig. Hierbei trägt der Querschnittgelähmte ein Headset und bewegt den Cursor über die Kop ewegungen. Damit unterstützende Technologien für eine Person mit QSL nützlich sind, müssen sie vollständig am Arbeitsplatz integriert sein. Dabei geht es zum Teil um die physische Zugänglichkeit – aber Rehabilitationsfachleute stellen immer häu ger fest, dass es ebenso wichtig ist sicherzustellen, dass Kollegen und Arbeitgeber verstehen, warum diese Spezialgeräte nötig sind. Zudem müssen sie den Nutzern in ausreichendem Maße erklären, wie diese Geräte funktionieren und verstehen, warum technische Unterstützung zur Reparatur und Wartung nötig ist, damit die Arbeit des Nutzers nicht unterbrochen wird (169, 173). Manchmal ist anspruchsvolle Technologie weder verfügbar noch notwendig – beispielsweise dann, wenn die beru iche Tätigkeit mithilfe eines Assistenten ausgeübt werden kann, der bei der Ausführung der Aufgaben behil ich ist. In einigen Fällen kann diese Rolle von Assistenztieren übernommen werden, die darin ausgebildet sind, Objekte zu tragen und zu bringen, um so die Ausübung der beru ichen Aufgaben zu erleichtern (174). Da die QSL mit großer Wahrscheinlichkeit auch Auswirkungen auf die Aufgaben hat, die ausgeführt werden können, beinhalten „angemessene Vorkehrungen“ auch Veränderungen der Art der beru ichen Tätigkeit. Die Art und Weise, wie die nötigen Aufgaben ausgeführt werden, muss vielleicht verändert werden, eine Teilzeitanstellung ist vielleicht nötig oder der Arbeitstag muss eventuell umstrukturiert werden – dazu zählt auch, den Beschä igten zu gestatten, für Blasen- und Darmmanagement oder Ruhepausen den Arbeitsplatz zu verlassen.
Eine aktuelle europäische Studie hat ergeben, dass 60% der jungen Menschen mit QSL nach Eintreten der QSL wieder in die Beschä igung zurückgekehrt sind – fast alle von ihnen haben Anpassungen genutzt, darunter auch eine Reduzierung des Zeitdrucks, exible Arbeitszeiten und – in einigen Fällen – Reduzierung der Arbeitszeit auf die Häl e (141). Das Zeitalter der technologischen und wirtscha lichen Veränderungen in Verbindung mit dem Wunsch nach einem ausgeglichenen Arbeit-Freizeit-Verhältnis, führt dazu, dass nicht nur Menschen mit Behinderung gerne anders arbeiten möchten. In einigen Ländern unterstützt die Regierung aktiv Programme für exible Arbeitszeiten und Job-Sharing – davon können auch Menschen mit QSL pro tieren (152). Bei der Heimarbeit wird von einem Ort fernab des Arbeitsortes aus gearbeitet – dabei werden verschiedene Informations- und Kommunikationstechnologien genutzt. Dies kann eine Möglichkeit sein, Barrieren in den Bereichen Transport und physische Umwelt zu überwinden. Auch gesundheitliche Einschränkungen wie Erschöpfung bedingt durch die QSL oder sekundäre Gesundheitsprobleme können so bewältigt werden (170). Die Vorteile der Heimarbeit müssen abgewogen werden gegenüber der Gefahr der sozialen Isolation und dem Risiko der beru ichen Ausgrenzung. Heimarbeit könnte auch Bemühungen zur Verbesserung der Zugänglichkeit von Verkehrsmitteln, Gebäuden und Gemeinscha en für Menschen mit eingeschränkter Mobilität verhindern. Es bedarf mehr Forschung zu den Vor- und Nachteilen in diesem Bereich (111).
Selbstständigkeit In vielen Ländern mit niedrigem Nationaleinkommen ist Selbständigkeit in Form von Kleinhandwerk oder dem Verkauf von landwirtscha lichen Produkten häu g eine Einkommensquelle für Menschen mit Behinderungen und eine wichtige Beschä igungsmöglichkeit 215
Querschnittlähmung – Internationale Perspektiven
für Menschen mit QSL (109). Auch in Ländern mit hohem Nationaleinkommen bietet die Selbständigkeit mögliche Vorteile für querschnittgelähmte Menschen: Arbeiten von Zuhause aus oder in der unmittelbaren Gemeinscha vermeidet Hindernisse in den Bereichen Zugänglichkeit und Verkehrsmitteln, Diskriminierung am Arbeitsplatz sowie negative Einstellungen von Kollegen und ermöglicht exible Arbeitszeiten und -bedingungen. Studien zeigen, dass Menschen mit Mobilitätsproblemen und Erkrankungen des Bewegungsapparates besonders häu g selbständig sind (159). Zu den Nachteilen der Selbständigkeit zählen Isolation und die mangelnde Entwicklung von Fähigkeiten, ein geringeres Einkommen und die Tatsache, dass die Kosten für beschä igungsbedingte unterstützende Technologien vom Betro enen allein getragen werden müssen (171). Die wichtigste Barriere in Bezug auf die Selbständigkeit ist die anfängliche nanzielle Last bei Beginn der selbständigen Tätigkeit, sei es in Form von Kapital für Betriebsmittel oder Ausbildungskosten. Eine umfangreiche Studie zu Möglichkeiten der Selbständigkeit in Europa hat ergeben, dass Menschen mit Behinderung sich meist an Familienmitglieder wendeten, wenn sie nanzielle Unterstützung benötigten, da private Kreditgeber sie in der Regel als hohes Risiko ansahen. In Ländern wie dem Vereinigten Königreich stehen Menschen mit Behinderung Steuergutschri en und weitere Einkommensunterstützung aufgrund der Behinderung zur Verfügung. Manchmal sind auch Mittelstandskredite über Arbeitsvermittlungsstellen verfügbar (159). In Kanada und dem Vereinigten Königreich wird relativ großzügige nanzielle Unterstützung in Form von Zuschüssen, Krediten und Steuergutschri en angeboten – aber selbst hier wird dies nicht o in Anspruch genommen, da es an verfügbaren Informationen mangelt (159, 175). Zugang zu nanzieller Unterstützung bei der Gründung von Kleinunternehmen kann sich als enorme Herausforderung für Menschen mit QSL 216
in Ländern mit niedrigem Nationaleinkommen herausstellen. In diesen Ländern spielen Mikro nanzierungen eine wichtige Rolle dabei, es Menschen mit Behinderung zu ermöglichen, ihren Lebensunterhalt zu verdienen. Mikro nanzierung bezieht sich auf die Bereitstellung von regulären Finanzdienstleistungen für Menschen und Kleinunternehmen, die sonst keinen Zugang zu erschwinglichen Bankdienstleistungen haben. Eine umfassende Literaturübersicht und Analyse der Vorgehensweise in Afrika und Asien kam zu dem Schluss, dass Menschen mit Behinderung nicht gleichberechtigt von den bestehenden Mikro nanzierungsprogrammen pro tieren konnten (176, 177). Handicap International führte 2006 eine eingehende Studie zum ema Zugang zu Mikro nanzorganisationen in den ärmeren Ländern Afrikas und Asiens durch und kam zu dem Ergebnis, dass nur 0,5% der Kunden dieser Förderorganisationen Menschen mit Behinderung waren (178). Angesichts des Erfolges der Asociación de Discapacitados de la Resistencia Nicaragüense in Nicaragua und des Internationalen Komitees des Roten Kreuzes in Afghanistan und in anderen Ländern, betont der Bericht, dass NGOs, deren Stärken im Kapazitätsau au liegen, nötig sind, um dieses komplexe Problem zu lösen. Anderen Forschungsergebnissen zufolge haben gemeindenahe Spar- und Kreditgemeinscha en das Potenzial, die Beschä igungsquoten von Menschen mit Behinderung zu erhöhen. Des Weiteren können Behindertenorganisationen eine wichtige Rolle spielen beim Zusammenschluss mit diesen gemeinscha lichen Finanzgruppen (177).
Sozialer Schutz Behinderung steht in engem Zusammenhang mit extremer Armut weltweit – und QSL bildet dabei keine Ausnahme. Eine australische Studie ergab, dass das durchschnittliche Jahreseinkommen von Beschä igten mit Tetraplegie nur halb so hoch ist, wie das durchschnittliche
Kapitel 8
Bildung und Beschäftigung
Jahreseinkommen der Allgemeinbevölkerung (179). Laut einer Studie aus Malaysia verdienten die 50% der Betro enen, die einer Beschä igung nachgingen, nach Eintreten der QSL wesentlich weniger als zuvor (105). In Südindien leben die meisten QSL-Patienten unter der Armutsgrenze (109, 135) und in Nepal hatte mehr als die Häl e der Studienpopulation einige Jahre nach Entlassung aus der Rehabilitation keinerlei Einkommen (180). Eine Studie in Simbabwe hat ergeben, dass ein Drittel der Betro enen, die eine QSL überlebt haben, keinerlei Einkommen hatte und von der nanziellen Unterstützung von Familie und Freunden abhängig war (108). Berichten aus Ghana zufolge wenden sich Menschen mit eingeschränkter Mobilität illegaler Bettelei zu, aufgrund des Mangels an Beschä igungsmöglichkeiten oder Sozialdiensten (181). Abgesehen von diesen vereinzelten Studien ist nur sehr wenig bekannt über die wirtscha liche Unabhängigkeit von querschnittgelähmten Menschen. Viele Menschen sind wahrscheinlich auf Sozialleistungen, Invalidenrenten, Einkommensbeihilfen, Unterstützung der Familie oder Naturalientausch angewiesen. Soziale Sicherungsnetze sind anfällig für Wirtscha sabschwünge und fehlen in den meisten ärmeren Ländern der Welt. In einigen Ländern – darunter auch Indien – sind die Beihilfen auf Beschä igte im ö entlichen Dienst oder Militärangehörige beschränkt und dienen der Unterstützung von Menschen mit QSL in diesen Bereichen (182, 183). In den meisten Ländern mit hohem Nationaleinkommen und auch in immer mehr Ländern mit mittlerem Nationaleinkommen, wie beispielsweise Brasilien, Namibia und Südafrika, gibt es zwei Formen des sozialen Schutzes. Eine ist temporärer Natur und bedarfsorientiert und dient der Sicherung des Einkommens, bis wieder eine dauerha e Anstellung besteht (z.B. Arbeitslosenversicherung, Leistungen bei vorübergehender Arbeitsunfähigkeit). Bei der anderen Variante handelt es sich um eine dauerha e Form der sozialen Unterstützung oder
Sozialhilfe, wenn der Betro ene unter einer dauerha en Behinderung von so schwerem Ausmaß leidet, dass er nicht mehr beschä igungsfähig ist. In den Niederlanden ist eine Arbeitslosenversicherung beispielsweise verp ichtend. Folglich werden 97% der arbeitslosen Menschen mit QSL nanziell unterstützt. Zudem haben die meisten der Betro enen, die einer Beschä igung nachgehen, weiterhin Anspruch auf ergänzende Sozialleistungen, basierend auf der Höhe von 70% ihres Gehalts vor Eintreten der QSL (127). In Kanada dagegen gibt es eine langfristige Invalidenversicherung, die eine Gehaltsfortzahlung in Höhe von 65-70% über die ersten zwei Jahre nach Eintreten der QSL hinweg gewährleistet, bis eine alternative Beschä igungsmöglichkeit gefunden wurde. Wenn es keine Möglichkeit zur Rückkehr in die Beschä igung gibt, werden diese Zahlungen weiter fortgesetzt und schließlich durch eine Art der sozialen Unterstützung ersetzt (152). Der Nachteil dieser Sozialversicherungssysteme besteht darin, dass sie auch zur „Sozialleistungsfalle“ werden können. Dies bezieht sich auf querschnittgelähmte Menschen mit fortwährenden Gesundheits- und Rehabilitationsbedürfnissen (darunter auch die Kosten für unterstützende Geräte), die sich weigern, einer beru ichen Tätigkeit nachzugehen, da Maßnahmen zur Einkommenssicherung und andere Programme bedarfsorientiert sind oder enden, sobald eine beru iche Tätigkeit aufgenommen wird. Der Grund dafür ist, dass das erhaltene Einkommen abzüglich der Kosten für Gesundheitsversorgung und andere Ausgaben in Zusammenhang mit der QSL geringer wäre, als die Zuwendungen zur dauerha en Einkommenssicherung (184). Es gibt widersprüchliche Hinweise zu den Ausmaßen dieses Problems. Eine große Studie in den USA hat gezeigt, dass bei arbeitslosen Menschen mit QSL höhere Sozialleistungen in enger Verbindung standen mit geringeren Beschä igungschancen in den folgenden Jahren (129). Menschen, die eine Invalidenversicherung beziehen, scheinen sich nicht selbst aus dem 217
Querschnittlähmung – Internationale Perspektiven
Arbeitsmarkt zu drängen. Die Häl e von Ihnen erwartete einen Lohn, der bei 80% oder weniger ihres letzten Gehalts vor Bezug der Invalidenversicherung liegt. Es wird geschätzt, dass etwa 7% der Langzeitbeziehenden von Invalidenversicherungen möglicherweise in die Beschä igung zurückkehren, wenn sie eine Arbeitsstelle suchen und ein Gehalt von 80% ihres letzten Gehaltes angeboten bekommen (185). Eine sehr unkomplizierte, wenn auch kostenintensive Lösung zur Vermeidung der „Sozialleistungsfalle“ wäre eine Veränderung der Bedarfsfeststellung, so dass Menschen mit hohen Gesundheitskosten und hohen Kosten in Zusammenhang mit der Behinderung auch nach Antritt einer sicheren Anstellung noch einen Teil der Zuwendungen beziehen können. Das Problem bei dieser Lösung ist, dass Menschen im Fall von weitverbreiteter Arbeitslosigkeit versuchen werden, von Erwerbsunfähigkeitsleistungen zu pro tieren, um die Gesundheitsversorgungskosten zu decken. Die OECD hat drastische Veränderungen empfohlen, die sehr zum Vorteil von Menschen mit QSL wären (102, 186) und damit argumentiert, dass Erwerbsunfähigkeitsleistungen nur ein Teil eines umfassenderen „Teilhabepakets“ sein sollten, das an die individuellen Bedürfnisse und Fähigkeiten angepasst ist und in erster Linie dem Ziel einer Rückkehr in die Beschä igung dient. Dieses Paket würde auch Rehabilitation und Berufsausbildung, Unterstützung bei der Stellensuche sowie Bar- oder Sachleistungen zur Vorbereitung auf die Rückkehr in die Beschä igung beinhalten. Dabei müssen Arbeitgeber direkt einbezogen werden. Für die Arbeitgeber sollten wiederum Anreize gescha en werden, im Fall einer Einstellung von Menschen mit Behinderung sowie negative Anreize, sofern im Nachhinein eine Kündigung aufgrund des Bedarfs an Vorkehrungen am Arbeitsplatz festgestellt werden kann. Somit wären Erwerbsunfähigkeitsleistungen vorübergehende Zahlungen, die als Schritt hin zu einer Vollbeschä igung dienen.
Die von der OECD empfohlenen Veränderungen hinsichtlich der Maßnahmen im Bereich Behinderung und Beschä igung würden querschnittgelähmten Menschen vermutlich mehr als anderen Menschen mit Behinderung zugutekommen. Normalerweise sind Menschen mit traumatischer QSL jung und standen vor Eintreten der Verletzung am Beginn einer Karriere oder haben darauf hingearbeitet. Beru iche Rehabilitation ergänzt als Übergangspaket berufsbezogener Dienste den Vorschlag der OECD.
Schlussfolgerung und Empfehlungen Bildung ist ein wichtiger Schritt hin zu Beschäftigung und vollständiger Zugehörigkeit zur Gesellscha . Doch für Kinder mit Spina bi da oder junge Erwachsene mit QSL können die Rückkehr in die Schule und der vollständige Zugang zu Regelschulen aufgrund physischer und einstellungsbedingter Barrieren schwierig sein. Veränderungen auf der Ebene der Institutionen und Schulen sind notwendig, um diese Barrieren aus dem Weg zu scha en und Vorkehrungen und Unterstützungsdienste zu ermöglichen, damit jedes Kind und jeder junge Erwachsene mit QSL voll von Bildung pro tieren kann. Ältere Erwachsene, die vielleicht eine Umschulung machen möchten, benötigen ebenfalls maßgeschneiderte Unterstützung und Vorkehrungen von Seiten der Ausbildungsinstitute, berufsbildenden und technischen Schulen, Fachhochschulen und Universitäten. Querschnittgelähmte Menschen können, sofern sie quali ziert sind, die Anforderungen vieler beru icher Tätigkeiten erfüllen und produktiv sein. Jedoch ist es für sie häu g schwierig, eine Anstellung zu nden und zu behalten, aufgrund des mangelnden Zugangs zu einschlägiger Bildung, Ausbildung, beru icher Rehabilitation und Stellenvermittlungsdiensten. Des Weiteren mangelt es an nanziellen Ressourcen in Bezug auf eine mögliche selbständige Tätigkeit und es
218
Kapitel 8
Bildung und Beschäftigung
entstehen negative Anreize und Verzögerungen durch die Struktur einiger Maßnahmen zum sozialen Schutz. Ebenso mangelt es häu g an Vorkehrungen am Arbeitsplatz und unterstützenden Technologien. Ein weiteres Problem sind die falschen Wahrnehmungen von Arbeitgebern und Kollegen in Bezug darauf, was ein Mensch mit QSL leisten kann und was nicht. Viele Menschen und Gruppen müssen miteinbezogen werden und sich abstimmen, damit die Hindernisse in Bezug auf die volle Teilhabe an Bildung und Beschä igung überwunden werden können – dazu zählen Familien, Schulleiter, Lehrer, Fachleute in der beru ichen Rehabilitation und andere Experten der Regierung, Arbeitgeber und QSL-Organisationen . In den folgenden Empfehlungen sind wichtige Bereiche zusammengefasst, denen sich diese Akteure widmen müssen.
■
■
■ ■
Es sollte sichergestellt werden, dass Lehrer entsprechend ausgebildet sind, um die Bedürfnisse von Kindern mit Behinderung zu erfüllen. Sofern möglich, sollte bei der Rückkehr in die Schule oder beim Übergang zwischen zwei Bildungsebenen Peer-Mentoring angeboten werden. Man sollte sicherstellen, dass Eltern und Kinder in Entscheidungen einbezogen werden. Man sollte auf QSL-Organisationen zurückgreifen, um Informationen zur Verfügung zu stellen, und die Bewusstseinsbildung in Bezug auf Probleme in Zusammenhang mit QSL zu fördern.
Beschäftigung und wirtschaftliche Unabhängigkeit sichern ■ Wirksame Antidiskriminierungsgesetze sollten erlassen, durchgesetzt und bekanntgemacht werden, damit Arbeitgeber wissen, dass sie verpflichtet sind, Menschen mit Behinderung nicht zu diskriminieren und angemessene zu Vorkehrungen treffen. Der Zugang zu beruflicher Rehabilitation sollte gewährleistet werden, um Menschen mit QSL zu helfen, sich auf eine Beschäftigung vorzubereiten und psychosoziale Probleme anzugehen. Der Zugang zu Mikrofinanzierungen und zu anderen Kreditquellen sollte gefördert werden, wenn Menschen mit QSL sich selbständig machen möchten. Je nach Situation sollte ein sozialer Schutz gewährleistet werden, der die Betroffenen und ihre Familien unterstützt, aber kein negativer Anreiz für Beschäftigung ist. Es sollten statistische Daten zu den Erfahrungen von Menschen mit QSL und anderen Behinderungen im Bereich Beschäftigung gesammelt werden.
Verbesserung der Teilhabe an Bildung ■ Es sollte sichergestellt werden, dass Gesetze und Maßnahmen gewährleisten, dass Kinder mit QSL Zugang zu jeder schulischen Ebene haben, die ihren Bedürfnissen und Fähigkeiten entspricht – gleichberechtigt mit anderen. Es sollte sichergestellt werden, dass die Aufnahmeverfahren von Fachhochschulen und Universitäten keine potentiellen Bewerber mit QSL ausschließen und dass Strategien existieren, die es ermöglichen das Umfeld zugänglich zu gestalten. Die Rückkehr in die Schule sollte gemeinsam von Schul- und Rehabilitationspersonal geplant werden. Es sollte sichergestellt werden, dass Gesundheits-, Rehabilitations- und Unterstützungsleistungen verfügbar sind, die das Kind benötigt.
■
■
■
■ ■
■
■
219
Querschnittlähmung – Internationale Perspektiven
Quellen 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). WHO. World report on disability. Geneva, World Health Organization, 2011. UNESCO. Strong foundations: early childhood care and education. Education for All Global Monitoring Report, 2007. Paris, United Nations Educational, Scientific and Cultural Organization, 2006. Kochung JE. Role of higher education in promoting inclusive education: Kenyan perspective. Journal of Emerging Trends in Educational Research and Policy Studies, 2011, 2:144-149. Filmer D. Disability, poverty, and schooling in developing countries: results from 14 household surveys. The World Bank Economic Review, 2008, 22:141-163. doi: http://dx.doi.org/10.1093/wber/lhm021 UNESCO. Policy guidelines on inclusion in education. Paris, United Nations Educational, Scientific and Cultural Organization, 2009. Loeb ME, Eide AH, eds. Living conditions among people with activity limitations in Malawi: a national representative study. Oslo, SINTEF, 2004. Eide AH et al. Living conditions among people with disabilities in Zimbabwe: a representative, regional study. Oslo, SINTEF, 2003. Eide AH, van Rooy G, Loeb ME. Living conditions among people with disabilities in Namibia: a national, representative study. Oslo, SINTEF, 2003. Eide AH, Loeb ME, eds. Living conditions among people with activity limitations in Zambia. Oslo, SINTEF, 2006. VanLeit B, Channa S, Rithy B. Children with disabilities in rural Cambodia. An examination of functional status and implications for service delivery. Asia Pacific Disability Rehabilitation Journal, 2007, 18. Rieser R. Implementing inclusive education: A Commonwealth guide to implementing Article 24 of the UN Convention on the Rights of People with Disabilities. London, Commonwealth Secretariat, 2012. Zhang E. The protection of rights of people with disabilities in China. Asia Pacific Disability Rehabilitation Journal, 2007, 18:49-89. Croft A. Including disabled children in learning. Challenges in developing countries. Create Pathways to Access, Research Monograph, No. 26. Brighton, University of Sussex, 2010 (http://www.create-rpc.org/pdf_documents/PTA36.pdf, accessed 20 April 2012). McGinnis K, Lunn M. School re-entry after pediatric spinal cord injury. SCI Nursing, 2004, 21:222-223. PMID:15794424 DeVivo MJ, Chen Y. Trends in new injuries, prevalent cases, and aging with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:332-338. doi: http://dx.doi.org/10.1016/j.apmr.2010.08.031 Barf HA et al. Educational career and predictors of type of education in young adults with spina bifida. International Journal of Rehabilitation Research, 2004, 27:45-52. doi: http://dx.doi.org/10.1097/00004356-200403000-00006 DeVivo MJ. Epidemiology of traumatic spinal cord injury: trends and future implications. Spinal Cord, 2012, 50:365-372. doi: http://dx.doi.org/10.1038/sc.2011.178 Hagen EM et al. Traumatic spinal cord injury and concomitant traumatic brain injury: a cohort study. Acta Neurologica Scandinavica, Supplementum, 2010, 190:51-57. doi: http://dx.doi.org/10.1111/j.1600-0404.2010.01376.x Burmeister R et al. Attention problems and executive functions in children with spina bifida and hydrocephalus. Child Neuropsychology, 2005, 11:265-283. doi: http://dx.doi.org/10.1080/092970490911324 Fletcher JM et al. Spinal lesion level in spina bifida: a source of neural and cognitive heterogeneity. Journal of Neurosurgery Pediatrics 3, 2005, 102:268–279. Wasson CM, Bannister CM, Ward GS. Factors affecting the school placement of children with spina bifida. European Journal of Pediatric Surgery, 1992, 2 Suppl. 1:29-34. doi: http://dx.doi.org/10.1055/s-2008-1063496 Bellin MH et al. Correlates of depressive and anxiety symptoms in young adults with spina bifida. Journal of Pediatric Psychology, 2010, 35:778-789. Epub: 30 October 2009 doi: http://dx.doi.org/10.1093/jpepsy/jsp094 Bowman RM et al. Spina bifida outcome: a 25-year prospective. Pediatric Neurosurgery, 2001, 34:114-120. doi: http://dx.doi. org/10.1159/000056005 Sawin KJ, Betz CL, Linroth R. Gaps and opportunities: an agenda for further research, services, and program development in spina bifida. Pediatric Clinics of North America, 2010, 57:1041-1057. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.020 Graham P, Weingarden S, Murphy P. School reintegration: a rehabilitation goal for spinal cord injured adolescents. Rehabilitation Nursing, 1991, 16:122-127. doi: http://dx.doi.org/10.1002/j.2048-7940.1991.tb01196.x
15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26.
220
Kapitel 8
Bildung und Beschäftigung
27. Mulcahey MJ. Returning to school after a spinal cord injury: perspectives from four adolescents. The American Journal of Occupational Therapy, 1992, 46:305-312. doi: http://dx.doi.org/10.5014/ajot.46.4.305 28. Castle R. An investigation into the employment and occupation of patients with a spinal cord injury. Paraplegia, 1994, 32:182-187. doi: http://dx.doi.org/10.1038/sc.1994.33 29. Dudgeon BJ, Massagli TL, Ross BW. Educational participation of children with spinal cord injury. The American Journal of Occupational Therapy, 1997, 51:553-561. doi: http://dx.doi.org/10.5014/ajot.51.7.553 30. Knight A et al. The school lives of children and young people with a spinal cord injury. Report to the Back-Up Team. London, Thomas Coram Research Unit, University of London, 2008. 31. Newman L, Malouf D. The post-high school outcomes of youth with disabilities up to 4 years after high school. Menlo Park, CA, SRI International, 2009. 32. Massagli TL, Dudgeon BJ, Ross BW. Educational performance and vocational participation after spinal cord injury in childhood. Archives of Physical Medicine and Rehabilitation, 1996, 77:995-999. doi: http://dx.doi.org/10.1016/S0003-9993(96)90058-1 33. OECD. Inclusion of students with disabilities in tertiary education and employment, education and training policy. Paris, Organisation for Economic Co-operation and Development, 2011. 34. Momin AKM. Impact of services for people with spinal cord lesion on economic participation. Asia Pacific Disability Rehabilitation Journal, 2004, 15:53-67. 35. OECD. Students with disabilities, learning difficulties and disadvantages: policies, statistics and indicators. Paris, Organisation for Economic Co-operation and Development, 2007. 36. Bines H, Lei P, editors. Education’s missing millions: including disabled children in education through EFA FTI processes and national sector plans. Milton Keynes, World Vision UK, 2007 (http://www.worldvision.org.uk/upload/pdf/Education%27s_ Missing_Millions_-_Main_Report.pdf, accessed 16 May 2012). 37. UNESCO. Guidelines for inclusion: Ensuring access to Education for All. Paris, United Nations Educational, Scientific and Cultural Organization, 2005. 38. Dube AK. The role and effectiveness of disability legislation in South Africa. London, Disability Knowledge and Research Programme, 2005 (http://www.dfid.gov.uk/r4d/PDF/Outputs/Disability/PolicyProject_legislation_sa.pdf, accessed 20 April 2012). 39. Engelbrecht P, Oswald M, Forlin C. Promoting the implementation of inclusive education in primary schools in South Africa. British Journal of Special Education, 2006, 33:121-129. doi: http://dx.doi.org/10.1111/j.1467-8578.2006.00427.x 40. Liptak GS et al. Youth with spina bifida and transitions. Health and social participation in a nationally represented sample. The Journal of Pediatrics, 2010, 157:584–588.e1. 41. Holmbeck GN et al. Family perspective: how this product can inform and empower families of youth with spina bifida. Pediatric Clinics of North America, 2010, 57:919-934. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.012 42. O’Mahar K et al. A camp-based intervention targeting independence among individuals with spina bifida. Journal of Pediatric Psychology, 2010, 35:848-856. doi: http://dx.doi.org/10.1093/jpepsy/jsp125 43. van Mechelen MC et al. Work participation among young adults with spina bifida in the Netherlands. Developmental Medicine and Child Neurology, 2008, 50:772-777. doi: http://dx.doi.org/10.1111/j.1469-8749.2008.03020.x 44. Zukerman JM. Adolescent predictors of emerging adulthood milestones in youth with spina bifida. Journal of Pediatric Psychology, 2011, 36:265-276. doi: http://dx.doi.org/10.1093/jpepsy/jsq075 PMID:20855288 45. Miles M. Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society, 2002, 17:643-658. doi: http://dx.doi.org/10.1080/0968759022000010425 46. Webster G, Kennedy P. Addressing children’s needs and evaluating rehabilitation outcome after spinal cord injury: the child needs assessment checklist and goal-planning program. The Journal of Spinal Cord Medicine, 2007, 30 Suppl. 1:S140S145. PMID:17874699 47. Anderson CJ et al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine, 2004, 27 Suppl. 1:S98-S106. PMID:15503711 48. Anderson CJ, Vogel LC. Employment outcomes of adults who sustained spinal cord injuries as children or adolescents. Archives of Physical Medicine and Rehabilitation, 2002, 83:791-801. doi: http://dx.doi.org/10.1053/apmr.2002.32742 49. Vogel LC et al. Unique issues in pediatric spinal cord injury. Orthopedic Nursing, 2004, 23:300-308. doi: http://dx.doi. org/10.1097/00006416-200409000-00004 50. Jerlinder K, Danermark B, Gill P. Swedish primary-school teachers’ attitudes to inclusion – the case of PE and pupils with physical disabilities. European Journal of Special Needs Education, 2010, 25:45-57. doi: http://dx.doi. org/10.1080/08856250903450830
221
Querschnittlähmung – Internationale Perspektiven
51. Asbjørnslett M, Hemmingsson H. Participation at school as experienced by teenagers with physical disabilities. Scandinavian Journal of Occupational Therapy, 2008, 15:153-161. doi: http://dx.doi.org/10.1080/11038120802022045 52. House LA et al. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives. Spinal Cord, 2009, 47:882-886. doi: http://dx.doi.org/10.1038/sc.2009.64 53. Roessler RT, Hennessey ML, Rumrill PD. Strategies for improving career services for postsecondary students with disabilities: results of a focus group study of key stakeholders. Career Development for Exceptional Individuals, 2007, 30:158-170. doi: http://dx.doi.org/10.1177/08857288070300030501 54. Shem K et al. Return to work and school: a model mentoring program for youth and young adults with spinal cord injury. Spinal Cord, 2011, 49:544-548. doi: http://dx.doi.org/10.1038/sc.2010.166 55. Houchins DE. Post-secondary transitions assistive technology barriers and facilitators during secondary and post-secondary transitions. Career Development for Exceptional Individuals, 2001, 24:73-88. doi: http://dx.doi. org/10.1177/088572880102400106 56. National Center on Secondary Education and Transition (NCSET). Current challenges facing the future of secondary education and transition services for youth with disabilities in the United States. US Department of Education, Office of Special Education Program, Washington, DC, 2004. 57. Scarborough, J., Gilbride, D. Developing relationships with rehabilitation counselors to meet the transition needs of students with disabilities. Professional School Counseling. 2006 10: 25–33. 58. Dutta A, Schiro-Geist C, Kundu M. Coordination of postsecondary transition services for students with disabilities. Journal of Rehabilitation, 2009, 75:10-17. 59. Taylor M, Baskett M, Wren C. Managing the transition to university for disabled students. Education + Training, 2010, 52:165-175. 60. Lewin KM. Improving access, equity and transitions in education: creating a research agenda. Create Pathways to Access, Research Monograph, No. 1. Brighton, University of Sussex, 2007. 61. Vosloo S-M. The functioning of primary school learners with paraplegia/paraparesis in mainstream schools in the Western Cape, South Africa. An exploratory study. Disability and Rehabilitation, 2009, 31:23-31. doi: http://dx.doi. org/10.1080/09638280802280643 62. Ong LC, Lim YN, Sofiah A. Malaysian children with spina bifida: relationship between functional outcome and level of lesion. Singapore Medical Journal, 2002, 43:012−017. 63. Masangwa. Disabled children can and should go to school. The Africa Report, 2010 (http://theafricareport.com/Blog/index. php?trackback/12, accessed 15.5.2012). 64. Losinsky LO et al. An investigation into the physical accessibility to wheelchair bound students of an Institution of Higher Education in South Africa. Disability and Rehabilitation, 2003, 25:305-308. doi: http://dx.doi. org/10.1080/0963828021000043743 PMID:12745953 65. Abend AC. Planning and designing for students with disabilities. National Clearinghouse for Educational Facilities, 2001 (http://www.ncef.org/pubs/accessibility.pdf, accessed 14 November 2012). 66. Pivik J, McComas J, Laflamme M. Barriers and facilitators to inclusive education. Exceptional Children, 2002, 69:97-107. 67. Monk J, Wee J. Factors shaping attitudes toward physical disability and availability of rehabilitation support services for disabled persons in rural Kenya. Asia Pacific Disability Rehabilitation Journal, 2008, 19:93-113. 68. OECD. Accessibility Programme and School Restoration in Lisbon. PEB Exchange Paris: Organisation for Economic Co-operation and Development, 2006. 69. Cook A et al. School-based use of a robotic arm system by children with disabilities. IEEE Transactions on Neural Systems and Rehabilitation Engineering, 2005, 13:452-460. PMID:16425826 doi: http://dx.doi.org/10.1109/TNSRE.2005.856075 PMID:16425826 70. Pilot SCI. Making equipment decisions after spinal cord injury. A peer support discussion guide. Toronto, Toronto Rehabilitation Institute, 2003 (http://www.scipilot.com/_g/expe_g/PeerGuide.pdf, accessed 20 April 2012). 71. Hasselbring TS, Glaser CHW. Use of computer technology to help students with special needs. The Future of Children: Children and Computer Technology, 2000, 10:102-122. doi: http://dx.doi.org/10.2307/1602691 PMID:11255702 72. Kemp CE, Hourcade JJ, Parette HP. Building and initial information base. Assistive technology funding resources for schoolaged students with disabilities. Journal of Special Education Technology, 2000, 15:4. 73. Government of United Kingdom. Disabled students’ allowances. London, United Kingdom (http://www.gov.uk/disabledstudents-allowances-dsas, accessed 11 April 2013). 74. Disability Alliance. Disability Alliance Northern Ireland. London, United Kingdom. (http://www.nidirect.gov.uk/disabilityalliance, accessed 11 April 2013).
222
Kapitel 8
Bildung und Beschäftigung
75. Peters S. Inclusive education. An EFA strategy for all children. World Bank. Human Development Network. 2004 (http:// siteresources.worldbank.org/EDUCATION/Resources/278200-1099079877269/547664-1099079993288/InclusiveEdu_efa_ strategy_for_children.pdf, accessed 11 July 2012). 76. Meijer C. Financing of special needs education. A seventeen country study of the relation between financing of special needs education and integration Middelfart: Denmark: European Agency for Development in Special Needs Education, 1999. 77. Krause JS, Carter RE. Risk of mortality after spinal cord injury: relationship with social support, education, and income. Spinal Cord, 2009, 47:592-596. doi: http://dx.doi.org/10.1038/sc.2009.15 78. Whalley Hammel K. Experience of rehabilitation following spinal cord injury: a meta-synthesis of qualitative findings. Spinal Cord, 2007, 45:260-274. PMID:17310257 79. Back Up. Back Up Trust (http://www.backuptrust.org.uk/what-we-do/mentoring, accessed 5 May 2013). 80. Anderson CJ et al. Anxiety and depression in children and adolescents with spinal cord injuries. Developmental Medicine and Child Neurology, 2009, 51:826-832. doi: http://dx.doi.org/10.1111/j.1469-8749.2009.03268.x 81. Krause JS, Broderick LA. 25-year longitudinal study of the natural course of aging after spinal cord injury. Spinal Cord, 2005, 43:349-356. doi: http://dx.doi.org/10.1038/sj.sc.3101726 82. Nel N et al. A comparative perspective on teacher attitude-constructs that impact on inclusive education in South Africa and Sweden. South African Journal of Education, 2011, 31:74-90. 83. Huang HH, Diamond KE. Early childhood teachers’ ideas about including children with disabilities in programmes designed for typically developing children. International Journal of Disability Development and Education, 2009, 56:169-182. doi: http://dx.doi.org/10.1080/10349120902868632 84. Mulvihill BA, Cotton JN, Gyaben SL. Best practices for inclusive child and adolescent out-of-school care. A review of the literature. Family & Community Health, 2004, 27:52-64. 85. Mukhopadhay S, Molosiwa SM. Influence of an introductory special education course on attitude change of PGDE students of University of Botswana. Asia Pacific Disability Rehabilitation Journal, 2010, 21. 86. Wehbi S. The challenges of inclusive education in Lebanon. Disability & Society, 2006, 21:331-343. doi: http://dx.doi. org/10.1080/09687590600679980 87. UNESCO. Toolkit for creating inclusive learning-friendly environments. Paris, United Nations Educational, Scientific and Cultural Organization, 2009. 88. OECD. OECD toolkit on teaching for diversity.Paris, OECD, Centre for Educational Research and Innovation (www.oecd.org/ edu/ted/toolkit, accessed 18 May 2012). 89. Sharma, U, Forlin, C, Loreman, T. Impact of training on pre-service teachers’ attitudes and concerns about inclusive education and sentiments about persons with disabilities. Disability & Society, 2010, 23:772–785. 90. Diaz-Greenberg R et al. What teachers need to know about the struggle for self-determination (conscientization) and self-regulation: adults with disabilities speak about their education experiences. Teaching and Teacher Education, 2000, 16:873-887. doi: http://dx.doi.org/10.1016/S0742-051X(00)00032-9 91. Buckup S. The price of exclusion. The economic consequences of excluding people with disabilities from the world of work. Employment Working Paper, No. 43. Geneva, International Labour Organization, 2009. 92. Krause JS et al. Employment after spinal cord injury: differences related to geographic region, gender and race. Archives of Physical Medicine and Rehabilitation, 1998, 79:615-624. doi: http://dx.doi.org/10.1016/ S0003-9993(98)90033-8 93. Krause JS. Adjustment to life after spinal cord injury: a comparison among three participant groups based on employment status. Rehabilitation Counseling Bulletin, 1992, 35:218-229. 94. Crisp R. Vocational decision making by sixty spinal cord injury patients. Paraplegia, 1992, 30:420-424. doi: http://dx.doi. org/10.1038/sc.1992.92 95. Chapin M, Kewman D. Factors affecting employment following spinal cord injury: a qualitative study. Rehabilitation Psychology, 2001, 46:400-416. doi: http://dx.doi.org/10.1037/0090-5550.46.4.400 96. Ottomanelli L, Lind L. A review of critical factors related to employment following spinal cord injury: implications for research and vocational services. The Journal of Spinal Cord Medicine, 2009, 32:503-531. PMID:20025147 97. Krause JS, Saunders L, DeVivo MJ. Income and risk of mortality after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:339-345. doi: http://dx.doi.org/10.1016/j.apmr.2010.09.032 98. Hess DW et al. Predictors for return to work after spinal cord injury: a 3-year multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2000, 81:359-363. doi: http://dx.doi.org/10.1016/S0003-9993(00)90084-4 99. Krause JS, Anson C. Adjustment after spinal cord injury: relationship to participation in employment of educational activities. Rehabilitation Counseling Bulletin, 1997, 40:202-214.
223
Querschnittlähmung – Internationale Perspektiven
100. Meade MA et al. The influence of secondary conditions on job acquisition and retention in adults with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:425-432. doi: http://dx.doi.org/10.1016/j.apmr.2010.10.041 101. Young AE, Murphy GC. Employment status after spinal cord injury (1992–2005): A review with implications for interpretation, evaluation, further research, and clinical practice. International Journal of Rehabilitation Research, 2009, 32:1-11. doi: http://dx.doi.org/10.1097/MRR.0b013e32831c8b19 102. OECD. Transforming disability into ability. Policies to promote work and income security for disabled people. Paris, Organisation for Economic Co-operation and Development, 2003. 103. Lidal IB, Huynh TK, Biering-Sorensen F. Return to work following spinal cord injury: A review. Disability and Rehabilitation, 2007, 29:1341-1375. doi: http://dx.doi.org/10.1080/09638280701320839 PMID:17729082 104. Lidal IB et al. Employment of persons with spinal cord lesions injured more than 20 years ago. Disability and Rehabilitation, 2009, 31:2174-2184. doi: http://dx.doi.org/10.3109/09638280902946952 105. Ramakrishnan K et al. Return to work after spinal cord injury in Malaysia. Spinal Cord, 2011, 49:812-816. doi: http://dx.doi. org/10.1038/sc.2010.186 106. Hansen CH, Mahmud I, Bhuiyan AJ. Vocational reintegration of people with spinal cord lesion in Bangladesh – an observational study based on a vocational training project at CRP. Asia Pacific Disability Rehabilitation Journal, 2007, 18:63-75. 107. Gupta N, Solomon J, Raja K. Employment after paraplegia in India: a postal survey. Spinal Cord, 2011, 49:806-811. doi: http://dx.doi.org/10.1038/sc.2011.1 108. Levy LF et al. Problems, struggles and some success with spinal cord injury in Zimbabwe. Spinal Cord, 1998, 36:213-218. doi: http://dx.doi.org/10.1038/sj.sc.3100574 109. Samuelkamaleshkumar S et al. Community reintegration in rehabilitated South Indian persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2010, 91:1117-1121. doi: http://dx.doi.org/10.1016/j.apmr.2010.04.005 110. Gerhardt CA et al. Educational and occupational outcomes among survivors of childhood cancer during the transition to emerging adulthood. Journal of Developmental and Behavioral Pediatrics, 2007, 28:448-455. doi: http://dx.doi.org/10.1097/ DBP.0b013e31811ff8e1 111. Frieden L, Winnegar AJ. Opportunities for research to improve employment for people with spinal cord injuries. Spinal Cord, 2012, 50:379-381. doi: http://dx.doi.org/10.1038/sc.2012.38 112. Yasuda S et al. Return to work after spinal cord injury: a review of recent research. NeuroRehabilitation, 2002, 17:177-186. PMID:12237497 113. Al-Khodairy AT, El Masry WS. Vocational rehabilitation and spinal cord injuries. In: Gobelet C, Franchignoni F, eds. Vocational rehabilitation. Collection de L’Académie Européenne de Médecine de Réadaptation. Paris, Springer-Verlag France, 2006, 165−184. doi: http://dx.doi.org/10.1007/2-287-29745-6_11 114. Anderson D et al. Determinants of return to work among spinal cord injury patients: a literature review. Journal of Vocational Rehabilitation, 2007, 27:57-68. 115. Noreau L et al. Work and employment. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010 (http://www.scireproject.com/sites/default/files/ work_and_employment.pdf, accessed 12 May 2012). 116. Krause JS et al. Employment after spinal cord injury: an analysis of cases from the Model Spinal Cord Injury Systems. Archives of Physical Medicine and Rehabilitation, 1999, 80:1492-1500. doi: http://dx.doi.org/10.1016/S0003-9993(99)90263-0 117. Valtonen K et al. Work participation among persons with traumatic spinal cord injury and meningomyelocele. Journal of Rehabilitation Medicine, 2006, 38:192-200. doi: http://dx.doi.org/10.1080/16501970500522739 118. Marini I et al. Vocational rehabilitation service patterns related to successful competitive employment outcomes of persons with spinal cord injury. Journal of Vocational Rehabilitation, 2008, 28:1-13. 119. Krause JS et al. Prediction of postinjury employment and percentage of time worked after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2012, 93:373-375. doi: http://dx.doi.org/10.1016/j.apmr.2011.09.006 120. Phillips VL, Hunsaker AE, Florence CS. Return to work and productive activities following a spinal cord injury: the role of income and insurance. Spinal Cord, 2012, 50:623–626 (E-pub ahead of print). doi: http://dx.doi.org/10.1038/sc.2012.22 121. Krause JS, Terza JV, Dismuke C. Earnings among people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:1474-1481. doi: http://dx.doi.org/10.1016/j.apmr.2007.12.040 122. Meade MA et al. Vocational rehabilitation services for individuals with spinal cord injury. Journal of Vocational Rehabilitation, 2006, 25:3-11. 123. Arango-Lasprilla JC et al. Race, ethnicity, and employment outcomes 1, 5, and 10 years after spinal cord injury: a longitudinal analysis. Journal of Physical Medicine & Rehabilitation: the journal of injury, function, and rehabilitation, 2010, 2:901–910.
224
Kapitel 8
Bildung und Beschäftigung
124. Wehman P et al. Employment satisfaction of individuals with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2000, 79:161-169. doi: http://dx.doi.org/10.1097/00002060-200003000-00009 125. Krause JS. Aging and self-reported barriers to employment after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2001, 6:102-115. doi: http://dx.doi.org/10.1310/1WMH-35Q6-12B5-3WMN 126. Benavente A et al. Assessment of disability in spinal cord injury. Disability and Rehabilitation, 2003, 25:1065-1070. doi: http://dx.doi.org/10.1080/0963828031000137775 127. Tomassen PC, Post MW, van Asbeck FW. Return to work after spinal cord injury. Spinal Cord, 2000, 38:51-55. doi: http:// dx.doi.org/10.1038/sj.sc.3100948 128. Krause JS. Years to employment after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2003, 84:1282-1289. doi: http://dx.doi.org/10.1016/S0003-9993(03)00265-X 129. Pflaum C et al. Worklife after traumatic spinal cord injury. The Journal of Spinal Cord Medicine, 2006, 29:377-386. PMID:17044388 130. Krause JS, Coker JL. Aging after spinal cord injury: a 30-year longitudinal study. The Journal of Spinal Cord Medicine, 2006, 29:371-376. PMID:17044387 131. Kurtaran A et al. Occupation in spinal cord injury patients in Turkey. Spinal Cord, 2009, 47:709-712. doi: http://dx.doi. org/10.1038/sc.2009.79 132. Murphy GC et al. Predicting employment status at 2 years postdischarge from spinal cord injury rehabilitation. Rehabilitation Psychology, 2011, 56:251-256. doi: http://dx.doi.org/10.1037/a0024524 133. Cifu DX, Wehman P, McKinley WO. Determining impairment following spinal cord injury. Physical Medicine and Rehabilitation Clinics of North America, 2001, 12:603-612. PMID:11478191 134. Kennedy P et al. A multi-centre study of the community needs of people with spinal cord injuries: the first 18 months. Spinal Cord, 2010, 48:15-20. doi: http://dx.doi.org/10.1038/sc.2009.65 135. Sekaran P et al. Community reintegration of spinal cord-injured patients in rural south India. Spinal Cord, 2010, 48:628-632. doi: http://dx.doi.org/10.1038/sc.2010.6 136. Jang Y, Wang YH, Wang JD. Return to work after spinal cord injury in Taiwan: the contribution of functional independence. Archives of Physical Medicine and Rehabilitation, 2005, 86:681-686. doi: http://dx.doi.org/10.1016/j.apmr.2004.10.025 137. Escorpizo R et al. A conceptual definition of vocational rehabilitation based on the ICF: building a shared global model. Journal of Occupational Rehabilitation, 2011, 21:126-133. doi: http://dx.doi.org/10.1007/s10926-011-9292-6 138. Gard G, Soderberg S. How can a work rehabilitation process be improved? A qualitative study from the perspective of social insurance officers. Disability and Rehabilitation, 2004, 26:299-305. doi: http://dx.doi.org/10.1080/09638280310001647624 139. DeSouza M et al. The Papworth early rehabilitation programme: vocational outcomes. Disability and Rehabilitation, 2007, 29:671-677. doi: http://dx.doi.org/10.1080/09638280600926538 140. Conroy L, McKenna K. Vocational outcome following spinal cord injury. Spinal Cord, 1999, 37:624-633. doi: http://dx.doi. org/10.1038/sj.sc.3100904 141. Schönherr MC et al. Vocational perspectives after spinal cord injury. Clinical Rehabilitation, 2005, 19:200-208. doi: http:// dx.doi.org/10.1191/0269215505cr845oa PMID:15759536 142. Marnetoft SU et al. Factors associated with successful vocational rehabilitation in a Swedish rural area. Journal of Rehabilitation Medicine, 2001, 33:71-78. doi: http://dx.doi.org/10.1080/165019701750098902 143. Targett P, Wehman P, Young C. Return to work for persons with spinal cord injury: designing work supports. NeuroRehabilitation, 2004, 19:131-139. PMID:15201472 144. Yeager P et al. Assistive technology and employment: experiences of Californians with disabilities. Work (Reading, Mass.), 2006, 27:333-344. PMID:17148870 145. Burns SM et al. Psychosocial predictors of employment status among men living with spinal cord injury. Rehabilitation Psychology, 2010, 55:81-90. doi: http://dx.doi.org/10.1037/a0018583 146. Krause JS, Broderick LA. Relationship of personality and locus of control with employment outcomes among participants with spinal cord injury. Rehabilitation Counseling Bulletin, 2006, 49:111-114. doi: http://dx.doi.org/10.1177/00343552060490020201 147. Chan SKK, Man DWK. Barriers to returning to work for people with spinal cord injuries: a focus group study. Work (Reading, Mass.), 2005, 25:325-332. PMID:16340109 148. Lin M-R et al. A prospective study of factors influencing return to work after traumatic spinal cord injury in Taiwan. Archives of Physical Medicine and Rehabilitation, 2009, 90:1716-1722. doi: http://dx.doi.org/10.1016/j.apmr.2009.04.006 PMID:19801061 149. Pearcey TE, Yoshida KK, Renwick RM. Personal relationships after a spinal cord injury. International Journal of Rehabilitation Research, 2007, 30:209-219. doi: http://dx.doi.org/10.1097/MRR.0b013e32829fa3c1 150. Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord, 2010, 48:73-79. doi: http://dx.doi.org/10.1038/sc.2009.92
225
Querschnittlähmung – Internationale Perspektiven
151. Targett P et al. Functional vocational assessment for individuals with spinal cord injury. Journal of Vocational Rehabilitation, 2005, 22:149-161. 152. Jongbloed L et al. Employment after spinal cord injury: the impact of government policies in Canada. Work (Reading, Mass.), 2007, 29:145-154. PMID:17726290 153. Wehmeyer ML et al. The self-determined career development model: a pilot study. Journal of Vocational Rehabilitation, 2003, 19:79-87. 154. New Zealand Spinal Trust. Kaleidoscope (http://www.nzspinaltrust.org.nz/rehab.asp, accessed 11 April 2013). 155. Inge K et al. Supported employment and assistive technology for persons with spinal cord injury: three illustrations of successful work supports. Journal of Vocational Rehabilitation, 1998, 10:141-152. doi: http://dx.doi.org/10.1016/S1052-2263(98)00010-5 156. CRP-Bangladesh. Centre for the rehabilitation of the paralysed. (http://www.crp-bangladesh. org/index.php?option=com_ content&view=article&id=69&Itemid=60, accessed 11 April 2013). 157. Hagner D, Cooney B. Building employer capacity to support employees with severe disabilities in the workplace. Work (Reading, Mass.), 2003, 21:77-82. PMID:12897393 158. Gilbride D et al. Identification of the characteristic of work environments and employers open to hiring and accommodating people with disabilities. Rehabilitation Counseling Bulletin, 2003, 46:130-137. doi: http://dx.doi.org/10.1177/003435 52030460030101 159. Boyland A, Burchardt T. Barriers to self-employment for disabled people. Report prepared for the Small Business Service. London, 2002 (http://www.bis.gov.uk/files/file38357.pdf, accessed 16 May 2012). 160. Barf HA et al. Restrictions in social participation in young adults with spina bifida. Disability and Rehabilitation, 2009, 31:921-927. doi: http://dx.doi.org/10.1080/09638280802358282 161. Ravaud JF, Madiot B, Ville I. Discrimination towards disabled people seeking employment. Social Science & Medicine, 1992, 35:951-958. doi: http://dx.doi.org/10.1016/0277-9536(92)90234-H 162. McMahon BT et al. Workplace discrimination and spinal cord injury: the national EEOC ADA research project. Journal of Vocational Rehabilitation, 2005, 23:155-162. 163. Hernandez B, Keys L, Balcazar F. Employer attitudes toward workers with disabilities and their ADA employment rights: a literature review. Journal of Rehabilitation, 2000, 66:4-16. 164. Gilbride D et al. Employers’ attitudes toward hiring persons with disabilities and vocational rehabilitation services. Journal of Rehabiltation, 2000, 66:17–23. 165. McNeal DR, Somerville NJ, Wilson DJ. Work problems and accommodations reported by persons who are postpolio or have a spinal cord injury. Assistive Technology, 1999, 11:137-157. doi: http://dx.doi.org/10.1080/10400435.1999.10131998 166. Sabata D et al. A retrospective analysis of recommendations for workplace accommodations for persons with mobility and sensory limitations. Assistive Technology, 2008, 20:28-35. doi: http://dx.doi.org/10.1080/10400435.2008.10131929 167. JAN. Workplace accommodations: low cost, high impact. Morgantown, WV, Job Accommodation Network, updated 2011, (http://AskJAN.org/media/LowCostHighImpact.doc, accessed 16 May 2012). 168. Somerville N, Wilson DJ, Bruyere SM. Employing and accommodating individuals with spinal cord injuries. Ithaca, NY, Cornel University, 2000 (http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1013&context=edicollect, accessed 16 May 2012). 169. McKinley W et al. Assistive technology and computer adaptations for individuals with spinal cord injury. NeuroRehabilitation, 2004, 19:141-146. PMID:15201473 170. Bricout JC. Using telework to enhance return to work outcomes for individuals with spinal cord injuries. NeuroRehabilitation, 2004, 19:147-159. PMID:15201474 171. Hedrick B et al. Employment issues and assistive technology use for persons with spinal cord injury. Journal of Rehabilitation Research and Development, 2006, 43:185-198. doi: http://dx.doi.org/10.1682/JRRD.2005.03.0062 172. Priebe MM et al. Spinal cord injury medicine. 6: Economic and societal issues in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl. 1:S84-S88. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.005 173. Driscoll MP, Rodger SA, deJonge DM. Factors that prevent or assist the integration of assistive technology into the workplace for people with spinal cord injuries: perspectives of the users and their employers and co-workers. Journal of Vocational Rehabilitation, 2001, 16:53-66. 174. Allen K, Blascovich J. The value of service dogs for people with severe ambulatory disabilities. A randomized controlled trial. Journal of the American Medical Association, 1996, 275:1001-1006. doi: http://dx.doi.org/10.1001/ jama.1996.03530370039028 175. Malacrida C. Income support policy in Canada and the UK: different, but much the same. Disability & Society, 2010, 25:673686. doi: http://dx.doi.org/10.1080/09687599.2010.505739
226
Kapitel 8
Bildung und Beschäftigung
176. Cramm JM, Finkenflügel H. Exclusion of disabled people from microcredit in Africa and Asia: a literature review. Asian Pacific Disability Rehabilitation Journal, 2008, 19:15-33. 177. de Klerk T. Funding for self-employment of people with disabilities. Grants, loans, revolving funds or linkage with microfinance programmes. Leprosy Review, 2008, 79:92-109. PMID:18540240 178. Handicap International. Good practices for the economic inclusion of people with disabilities in developing countries. Funding mechanisms for self-employment. Handicap International, 2006 (http://www.handicap-international.org.uk/Resources, accessed 11 April 2013). 179. Rowell D, Connelly LB. Personal assistance, income and employment: the spinal injuries survey instrument (SISI) and its application in a sample of people with quadriplegia. Spinal Cord, 2008, 46:417-424. doi: http://dx.doi.org/10.1038/sj.sc.3102157 180. Scovil CY et al. Follow-up study of spinal cord injured patients after discharge from inpatient rehabilitation in Nepal in 2007. Spinal Cord, 2012, 50:232-237. doi: http://dx.doi.org/10.1038/sc.2011.119 181. Kassah AK. Begging as work: a study of people with mobility difficulties in Accra, Ghana. Disability & Society, 2008, 23:163170. doi: http://dx.doi.org/10.1080/09687590701841208 182. Marriott A, Gooding K. Social assistance and disability in developing countries. Haywards Heath, Sightsavers International, 2007. 183. Singh R, Dhankar SS, Rohilla R. Quality of life of people with spinal cord injury in Northern India. International Journal of Rehabilitation Research, 2008, 31:247-251. doi: http://dx.doi.org/10.1097/MRR.0b013e3282fb7d25 184. Atwell S, Hudson LM. Social security legislation creates Ticket to Work and Work Incentives Improvement Act. Topics in Spinal Cord Injury Rehabilitation, 2004, 9:26-32. doi: http://dx.doi.org/10.1310/LU8A-C1PL-URT1-K0N2 185. Mitra S. Disability and social safety nets in developing countries. International Journal of Disability Studies, 2006, 2:43-88. 186. OECD. Sickness, disability and work: breaking the barriers. A synthesis of findings across OECD countries. Paris, Organisation for Economic Co-operation and Development, 2010.
227
Kapitel 9 Der Weg nach vorne: Empfehlungen
9
Der Weg nach vorne: Empfehlungen Eine Querschnittlähmung (QSL) ist ein medizinisch komplexer und lebenserschütternder Zustand. QSL hat schwerwiegende Konsequenzen sowohl für die Betro enen als auch die Gesellscha . Sie sind auf Unterstützung angewiesen, werden von Schulen ausgeschlossen und die Wahrscheinlichkeit einer Beschäftigung ist geringer. Die gravierendste Folge ist das Risiko eines vorzeitigen Todes. QSL stellt sowohl eine Herausforderung für das Gesundheitswesen als auch eine menschenrechtliche Herausforderung dar. Wie dieser Bericht jedoch gezeigt hat, ist es mit den richtigen politischen Maßnahmen möglich, überall in der Welt mit einer QSL zu leben, sich zu entfalten und einen Beitrag zu leisten. Querschnittgelähmte Menschen sind Menschen mit Behinderung – daher stehen ihnen dieselben Menschenrechte und derselbe Respekt zu, wie allen anderen Menschen mit Behinderungen. Sobald die unmittelbaren Gesundheitsbedürfnisse einer Person mit QSL gedeckt sind, stellen gesellscha liche und umweltbedingte Barrieren die größten Hindernisse für eine erfolgreiche Funktionsfähigkeit und Eingliederung von Menschen mit QSL dar. Es ist essenziell sicherzustellen, dass Gesundheitsdienstleistungen, Bildung, Verkehr und Beschä igung gleichermaßen vorhanden und zugänglich sind für Menschen mit QSL wie für Menschen mit Behinderungen. QSL wird immer ein Zustand sein, der das Leben verändert; dies muss jedoch keine Katastrophe oder Bürde sein.
Die wichtigsten Ergebnisse 1. Querschnittlähmung ist ein erhebliches Problem für das Gesundheitswesen ■ Die weltweite Inzidenz von QSL, sowohl traumatisch als auch nicht-traumatisch, liegt vermutlich zwischen 40 und 80 Fällen pro Million Einwohner. Basierend auf Weltbevölkerungsschätzungen von 2012 bedeutet dies, dass pro Jahr zwischen 250.000 und 500.000 Menschen eine QSL erleiden (1). Die Inzidenz von traumatischer QSL (TQSL), die in Studien auf Länderebene berichtet wird, reicht von 13 Fällen pro Million Einwohner bis zu 53 Fällen pro Million Einwohner. Historisch gesehen waren bis zu 231
Querschnittlähmung – Internationale Perspektiven
■
■
90% der Querschnittlähmungen traumatischer Natur; Daten aus den neuesten Studien zeigen jedoch einen leichten Trend zu einem erhöhten Anteil an nicht-traumatischen QSL (NTQSL). Verfügbare Studien berichten von einer NTQSL Inzidenz von 26 Fällen pro Million Einwohner. Es liegen keine weltweiten Schätzungen über die Prävalenz von QSL vor. Die vorhandenen Daten über die Inzidenz und Prävalenz von QSL sind unzureichend und inkonsistent. Selbst in Industrieländern variieren die Zahlen aufgrund von Unterschieden in der Art und Weise der Fallbestätigung und der Modellierungsmethodik sowie aufgrund echter Unterschiede in der Epidemiologie. Zahlen über die Prävalenz von TQSL reichen von 280 pro Million Einwohner in Finnland (2) über 681 pro Million Einwohner in Australien (3) bis zu 1298 pro Million Einwohner in Kanada (4). Die Prävalenz von nicht-traumatischer QSL bei Erwachsenen und Kindern in Australien liegt bei 367 pro Million Einwohner(5) und in Kanada bei 1227 pro Million Einwohner (4). Die kombinierte Prävalenz für traumatische und nicht-traumatische QSL in Kanada lag 2010 bei 2525 Fällen pro Million Einwohner. Zunehmende Prävalenz von QSL in manchen Ländern. Die Prävalenz von QSL in Ländern mit hohem Nationaleinkommen ist tendenziell ansteigend aufgrund von Zunahmen der Überlebensraten, die bei Tetraplegikern ca. 70% der allgemeinen Lebenserwartung und 88% bei Personen mit einer kompletten Paraplegie erreicht haben (6). Die Überlebensraten in Ländern mit geringem und mittlerem Nationaleinkommen sind jedoch weiterhin niedrig – unter bestimmten Bedingungen nämlich nur ein bis zwei Jahre nach der QSL – und dies trägt zu einer niedrigeren Prävalenz bei (7). Die weltweite Alterung trägt vermutlich zu einem Ratenanstieg von NTQSL bei und es besteht eine leichte Tendenz, dass der Anteil 232
■
■
■
der NTQSL proportional zur QSL Gesamtrate steigt. Das Profil der Betroffenen verändert sich. Junge Erwachsene haben die höchste QSL Inzidenzrate, gefolgt von älteren Menschen. Während junge Männer in der Statistik überwiegen, gibt es tendenziell eine Verschiebung hin zu älteren Menschen und Frauen. Das Alter zum Zeitpunkt der Verletzung steigt insgesamt an. Straßenverkehrsunfälle, Stürze und Gewalt sind die drei Hauptursachen für QSL. Verletzungen im Straßenverkehr dominieren mit fast 70% in der Region Afrika und stellen ebenfalls die überwiegende Ursache von QSL in anderen WHO Regionen dar, von 40% in der Region Süd-Ost Asien und bis zu 55% in der Region Westlicher Pazifik. Stürze, die zweithäufigste Ursache, liegen bei etwas mehr als 40% aller Fälle in den Regionen Süd-Ost Asien und Östliches Mittelmeer zugrunde. Die Region Afrika dokumentiert den niedrigsten Prozentsatz (14%) an Stürzen, während die anderen WHO Regionen Prozentzahlen zwischen 27% und 36% verzeichnen. Die Raten für Körperverletzung, einschließlich Gewaltanwendung und Selbstverletzung, meistens durch Feuerwaffen, variieren beträchtlich in den Regionen; die Regionen Nord-, Mittel- und Südamerika sowie Afrika und Östliches Mittelmeer verzeichnen die höchsten Prozentzahlen mit 14%, respektive 12% und 11%. Arbeitsbedingte Unfälle sind bei mindestens 15% aller traumatischen Rückenmarksverletzungen die Ursache. Über alle Regionen verteilt sind Sport und Freizeitaktivitäten mit weniger als 10% die Ursache aller TQSL Fälle. Suizidversuche machen über 10% aller TQSL Fälle in manchen Ländern aus. Tuberkulose kann in manchen Kontexten die Ursache für bis zu 20% aller NTQSL Fälle sein. Menschen mit QSL sterben früher. Studien lassen darauf schließen, dass die Wahrscheinlichkeit bei Menschen mit QSL
Kapitel 9
Der Weg nach vorne: Empfehlungen
■
vorzeitig zu sterben zwei bis fünf Mal höher ist als bei Menschen ohne QSL. Menschen mit einer Tetraplegie unterliegen einem größeren Risiko als Menschen mit einer Paraplegie und Menschen mit kompletten Querschnittlähmungen unterliegen einem höheren Risiko als Menschen mit inkompletten Lähmungen. Die Mortalität ist besonders hoch im ersten Jahr nach der Lähmung (8) und die Mortalitätsraten werden stark von der Leistung des Gesundheitssystems beeinflusst, insbesondere von der Notfallversorgung. Studien über die durchschnittliche Mortalitätsrate in Krankenhäusern in Ländern mit niedrigem/geringerem Nationaleinkommen ergaben eine drei Mal höhere Häufigkeit im Vergleich zu einkommensstarken Ländern. In Ländern mit einem geringen Nationaleinkommen sind vermeidbare Sekundärerkrankungen weiterhin die Haupttodesursache bei Menschen mit QSL (9). In Ländern mit einem hohen Nationaleinkommen haben sich die Haupttodesursachen bei Menschen mit QSL während der letzten Jahrzehnte verlagert (10, 11). Urologische Komplikationen als Todesursache gehen zurück, mit einer Verschiebung zu Atemwegsproblemen, Lungenentzündung oder Grippe als Haupttodesursache. Herzerkrankungen, Suizid und neurologische Probleme sind weitere in Bezug stehende Todesursachen.
■
■
■
■
2. Die Auswirkungen von Querschnittlähmung auf Betroffene und Gesellschaft sind erheblich ■ QSL hat negative Auswirkungen auf die Psyche. 20–30% der Menschen mit QSL weisen klinisch bedeutende Depressionssymptome auf. Dieser Prozentsatz ist signifikant höher als bei der allgemeinen Bevölkerung (12), obwohl die Mehrheit der Betroffenen
■
sich letztlich gut an die neuen, durch die QSL bedingten Umstände anpasst. Menschen mit QSL haben einen engeren Gesundheitsspielraum, teilweise aufgrund vermeidbarer Komplikationen wie Harnwegsinfektionen und Druckstellen. Querschnittlähmung steht in Zusammenhang mit dem Auseinanderbrechen von Familien aber auch deren Belastbarkeit. Direkt nach der Verletzung kann QSL negative Auswirkungen auf persönliche Beziehungen haben und wird mit einer höheren Scheidungsrate in Verbindung gebracht. Allgemein haben jedoch Beziehungen, die nach Eintreten der QSL entstehen mehr Bestand. Betreuer von Kindern und jungen Menschen mit Spina bifida oder traumatischer QSL erfahren typischerweise Isolation und Stress. Geringere schulische Partizipation. Bei Kindern und jungen Menschen mit Spina bifida oder erworbener QSL ist die Wahrscheinlichkeit geringer, dass sie eine Schule besuchen oder eine Hochschulbildung absolvieren. Beim Übergang von Schule zu Hochschule und von Schule zu Beschäftigung werden sie mit Hindernissen konfrontiert. QSL steht in Bezug zu einer geringeren wirtschaftlichen Partizipationsrate. Die durchschnittlichen Welt-Beschäftigungsraten bei Menschen mit QSL liegen bei nur 37%, mit einem Maximum von 51% in Europa (13). Die durch QSL entstehenden Kosten sind höher als die für vergleichbare Gesundheitsprobleme wie Demenz, multiple Sklerose, zerebrale Lähmung und bipolare Störung. In Australien wurden die über die gesamte Lebenszeit anfallenden Kosten (einschließlich finanzieller Kosten und durch Krankheit verursachte Gemeinkosten) auf AUS$5 Millionen für eine Person mit Paraplegie und AUS$9,5 Millionen für eine Person mit Tetraplegie geschätzt (14). Indirekte Kosten, wie Einkommensverluste, übersteigen im Allgemeinen noch die direkten Kosten. 233
Querschnittlähmung – Internationale Perspektiven
3. Barrieren beim Zugang zu Dienstleistungen sowie Umweltbarrieren schränken Partizipation ein und vermindern Lebensqualität ■ Unzureichende politische Maßnahmen und Versorgung. Oft mangelt es an geeigneten politischen Konzepten und Dienstleistungen in Bereichen wie integrative Bildung, zugängliche Umwelt und Rehabilitation. In Ländern mit geringem und mittlerem Nationaleinkommen z. B., verfügen nur 5-15% der Menschen über die technischen Hilfsmittel, die sie benötigen (15). In einer Studie der Niederlande wurden mehr als die Hälfte der Studienteilnehmer mit QSL verspätet von der stationären Rehabilitation entlassen, weil es Verzögerungen bei der Bereitstellung der Rollstühle gab (16). Mangelnde Finanzierung. Eine nigerianische Studie zeigte beispielsweise, dass für mehr als 40% der Teilnehmer mit QSL die Akutbehandlungskosten über 50% ihres jährlichen Einkommens ausmachten (17). Gleichermaßen sind die Kosten eine der Hauptbarrieren bei technischen Hilfsmitteln. Physische Zugangsbarrieren. Häuser, Schulen, Arbeitsplätze und sogar Krankenhäuser sind für Menschen im Rollstuhl oft nicht zugänglich. Die Unzugänglichkeit von Verkehrsmitteln stellt eine wesentliche Hürde bei der gesellschaftlichen Partizipation dar, insbesondere für diejenigen, die in ländlichen Gebieten wohnen. Menschen mit QSL können deshalb nicht das Krankenhaus oder Pflegeheim verlassen und unabhängig leben. Negative Einstellung. Fälschlicherweise wird manchmal angenommen, z. B., dass Tetraplegie ein schlimmeres Schicksal ist als der Tod, oder dass Menschen im Rollstuhl nicht arbeiten oder intime Beziehungen haben können. Sogar bei Familienmitgliedern kommt es vor, dass sie eine negative 234
■
■
Einstellung oder niedrige Erwartungen haben. Vorurteile entstehen oft durch einen Mangel an Wissen und Kontakt. Mangelndes Wissen. Rehabilitationsanbieter verfügen möglicherweise nicht über ausreichendes Wissen und ausreichende Fähigkeiten in Bezug auf QSL. Mangelndes Fachwissen unter Dienstanbietern z. B., kann für Menschen mit QSL eine Hürde darstellen, geeignete technische Hilfsmittel zu erhalten. Das primär zuständige Pflegepersonal kennt sich evtl. nicht mit vermeidbaren Komplikationen bei QSL aus, und „Diagnostic Overshadowing“ kann bedeuten, dass Menschen mit QSL nicht das Screening oder die Behandlung für ihre Gesundheitsbedürfnisse in der allgemeinen Gesundheitsversorgung bekommen. Mehr Evidenz ist notwendig um herauszufinden, welche Hilfsmittel und Maßnahmen wirksam sind, sowohl in der Prävention als auch beim Management von QSL.
4. Querschnittlähmung ist vermeidbar ■ Tod und Behinderung durch Verkehrsunfälle können reduziert werden durch den „Safe Systems Approach“, der hervorhebt, was im Hinblick auf die Verbesserung von Straßenumgebungen, Fahrzeugsicherheit und Fahrverhalten verändert werden kann (18). Beispielsweise wurden die ersten Gesetze zur Sicherheitsgurt-Pflicht 1970 in Australien eingeführt und, in Verbindung mit Bemühungen der Regierung zur Verbesserung des Straßenplanung und der Fahrzeugsicherheit, ging die Inzidenz von QSL durch Verkehrsunfälle pro Jahr um 4% zurück (19). Verhaltenscodes für Gesundheit und Sicherheit am Arbeitsplatz können Verletzungen reduzieren in den Sektoren Bergbau, Bau und Landwirtschaft.
■
■
■
Kapitel 9
Der Weg nach vorne: Empfehlungen
■
■
■
■
Den Zugang zu Schusswaffen und Messern einschränken verhindert Verletzungen und reduziert so soziale Kosten. Maßnahmen zur Einschränkung des Zugangs schließen Verbote, Genehmigungssysteme, ein Mindestalter für Käufer, Überprüfung des Vorstrafenregisters sowie Bestimmungen zur sicheren Aufbewahrung ein. Diese Maßnahmen wurden bereits erfolgreich in Österreich, Brasilien und einigen Bundesstaaten in den USA eingeführt. Verletzungen durch Sport- und Freizeitaktivitäten können minimiert werden durch besseres Design (z. B. von Schwimmbädern, Spielgeräten und Skipisten), Sicherheitsinformationen (z. B. Gefahren beim Springen in flaches Wasser, Ausbildung von Rugby Trainern) und Bewusstseinsbildung im Sport allgemein. Früherkennung und –behandlung kann zu einer reduzierten Prävalenz von spinaler TB (20) sowie von Spinaltumoren durch Krebs führen. Verbesserte Ernährung kann zu einer reduzierten Inzidenz von Spina bifida und anderen Defekten des Neuralrohrs führen (21). Die freiwillige Einnahme von folathaltigen Nahrungsergänzungsmitteln (drei Monate vor und nach der Empfängnis) zeigte eine Reduzierung der Neuralrohrdefekt-Rate, einschließlich Spina bifida, bei Neugeborenen (22, 23). In vielen Ländern, in denen Weizenmehl mit Folsäure ergänzt wird, konnte ebenfalls ein Rückgang der Spina bifida Inzidenz verzeichnet werden (24–27).
■
5. Querschnittlähmung kann überlebt werden ■ Die fachgerechte Versorgung vor der Krankenhauseinlieferung ist essenziell für das unmittelbare Überleben. Eine schnelle Erkennung, frühe Evaluation und fachgerechte Versorgung sind bei Verdacht auf eine QSL notwendig. Die fachgerechte
■
Versorgung von QSL vor der Krankenhauseinlieferung umfasst: Schnelle Beurteilung, einschließlich Messung der Vitalparameter und Grad des Bewusstseins; Einleitung der Verletzungsversorgung, einschließlich Stabilisierung der Vitalparameter, Ruhigstellung der Wirbelsäule zur Erhaltung neurologischer Funktionen bis eine Langzeitstabilisierung vorgenommen werden kann, Kontrolle von Blutungen, Körpertemperatur und Schmerz sowie ein sofortiger und sicherer Zugang zum Gesundheitsversorgungssystem. Betroffene sollten idealerweise innerhalb von zwei Stunden in die Notaufnahme eingeliefert werden, was stark von adäquaten Notfall- und Rettungsdiensten abhängt. Stabilisierung in der Akutversorgung. Die Akutversorgung kann chirurgische Interventionen oder eine konservative Versorgung beinhalten, eine akkurate Diagnose der QSL und Begleiterkrankungen ist jedoch die erste lebensrettende Maßnahme. Vielerlei Faktoren sollten bei der Bestimmung des am besten geeigneten Ansatzes in Betracht gezogen werden, einschließlich der Schwere der Verletzung, Art des Bruchs, Instabilitätsgrad, Vorhandensein neuraler Kompressionen, Einwirkung anderer Verletzungen, zeitliche Abstimmung der chirurgischen Intervention, Verfügbarkeit von Ressourcen wie Expertise, geeignete medizinische und chirurgische Einrichtungen sowie Vorteile und Risiken. In jedem Fall jedoch sollte es den Betroffenen und ihren Familien ermöglicht werden, eine fundierte Entscheidung zwischen konservativer Behandlung und chirurgischem Eingriff zu treffen. Die fortwährende Gesundheitspflege ist für das Überleben sowie für eine gute Lebensqualität notwendig. Betroffene können Komplikationen bei QSL wie Harnwegsinfektionen und Dekubitus vorbeugen oder überleben sowie ein langes und erfülltes Leben genießen, wenn sie fortwährenden 235
Querschnittlähmung – Internationale Perspektiven
Zugang zur Gesundheitsversorgung haben. Personen mit QSL haben oft einen engeren Gesundheitsspielraum, z. B. unterliegen sie einem erhöhten Risiko von Atemwegsinfektionen und Herzkreislauferkrankungen. Ohne Zugang zu elementarer Gesundheitsversorgung und Produkten wie Katheter und geeignete Kissen sowie Beratung über einen gesunden Lebensstil, besteht für die Betroffenen ein erhöhtes Risiko frühzeitig zu sterben.
■
6. Querschnittlähmung muss nicht einer guten Gesundheit und der sozialen Eingliederung im Weg stehen Ein Querschnittgelähmter mit Zugang zur Gesundheitsversorgung, persönlicher Unterstützung wenn notwendig und Hilfsgeräten sollte in der Lage sein, das Studium wieder aufzunehmen, unabhängig zu leben, einen wirtscha lichen Beitrag zu leisten und am familiären und gesellscha lichen Leben teilzuhaben. ■ Hat sich die Situation stabilisiert, besteht Bedarf an Zugang zu entsprechender Akutund postakuter Versorgung und zu Rehabilitationsdiensten, um sicherzustellen, dass die Funktionsfähigkeit maximiert wird und der/die Betroffene so unabhängig wie möglich leben kann. Es gibt verschiedene Modelle der Bereitstellung von Dienstleistungen. Es konnte jedoch aufgezeigt werden, dass spezialisierte Zentren die niedrigsten Kosten verursachen, weniger Komplikationen aufzuweisen haben und es zu weniger Rehospitalisierungen kommt im Vergleich zu nicht-spezialisierten Dienstleistungen. Für Personen mit QSL hat ein funktionierendes Blasen- und Darmmanagement eine hohe Priorität. Eine Therapie kann dazu beitragen, Funktionen in den oberen und unteren Extremitäten zu verbessern und es können dabei Techniken für die Unabhängigkeit im Alltag erlernt werden. Dienstleistungen und Beratung im Bereich der mentalen Gesundheit sind außerdem 236
■
wichtig: Es besteht ein Zusammenhang zwischen Depression und geringeren Fortschritten in der Funktionsfähigkeit sowie einer erhöhten Rate von Gesundheitskomplikationen. Informationen und Unterstützung bei Fragen und Problemen zur sexuellen und reproduktiven Gesundheit sollten ebenfalls Teil der Rehabilitation sein. Angemessene technische Hilfsmittel sind ein entscheidender Bestandteil der Rehabilitation. So benötigen beispielsweise 90% der Menschen mit QSL einen Rollstuhl. Dieser muss individuell der Person sowie den Gegebenheiten angepasst sein. Weitere notwendige technologische Hilfen umfassen Modifikationen im Haus und vor dem Haus, Umweltkontrolle und in manchen Fällen Kommunikationssysteme für Menschen mit Tetraplegie. Dienstanbieter sollten den Wiedereinstieg in Bildung und Beruf fördern. Selbsthilfegruppen, zugängliche Gebäude und Personenbeförderung, berufliche Rehabilitation und Antidiskriminierungsmaßnahmen können sicherstellen, dass Kinder und Erwachsene die Schule wieder besuchen bzw. das Studium wieder aufnehmen, unabhängig leben, einen wirtschaftlichen Beitrag leisten und am Familien- und Gemeinschaftsleben teilnehmen können.
Empfehlungen 1. Maßnahmen des Gesundheitssektors im Bereich Querschnittlähmung verbessern Hierfür sind notwendig: Die Scha ung von mehr Kapazitäten für Arbeitskrä e des Gesundheits- und Rehabilitationssektors; die Förderung von Präventionsmaßnahmen und die frühzeitige Bereitstellung von Dienstleistungen; die Sicherstellung, dass geeignete medizinische
Kapitel 9
Der Weg nach vorne: Empfehlungen
Dienstleistungen und Rehabilitationsdienstleistungen verfügbar und zugänglich sind; die Verbesserung der Koordinierung für mehr E ektivität und Kostenreduktion; die Erweiterung des Krankenversicherungsschutzes, um verheerende Gesundheitsausgaben zu vermeiden; sowie die Identi zierung von Strategien zur Versorgung mit geeigneten Hilfsmitteltechnologien und Gesundheitsprodukten.
eine Reihe von Interventionen beinhalten. Dazu gehören die Ausbildung von Ärzten und anderen Gesundheitsfachkrä en im Grundstudium, die Interaktionen mit Schulklassen um Stigmata abzubauen sowie Medienkampagnen zur Bewusstseinsbildung.
2. Autonomie von Menschen mit Querschnittlähmung und deren Familien fördern Menschen mit QSL benötigen Informationen, damit sie nach der Klinikentlassung Verantwortung für ihre eigene Gesundheitsversorgung übernehmen können. Informationen sollten mit Familienmitgliedern während der Rehabilitation geteilt werden. Die Unterstützung von Familienmitgliedern und anderen P egekrä en kann Stress und Burnout verhindern. In Ländern mit hohem Nationaleinkommen kann ein Modell, bei dem hilfebedür ige Querschnittgelähmte mit persönlicher Unterstützung unabhängig leben können, Autonomie für die Betro enen und eine kostene ziente Lösung bieten. „Community-based rehabilitation“ (CBR) (gemeindenahe Rehabilitation) ist wichtig in Ländern mit geringem Nationaleinkommen. Generell können sich soziale Netzwerke, Selbsthilfegruppen und Behindertenorganisationen für Autonomie und Partizipation einsetzen. Zugang zu körperlichen Aktivitäten und Sport kann sowohl das physiologische als auch das psychische Wohlergehen fördern.
4. Sicherstellen, dass Gebäude, Verkehrsmittel und Informationen zugänglich sind Hierfür sind notwendig: Rechtswirksame nationale Zugangsnormen; Ausbildung von Architekten und Designern über universelles Design; Verbesserung des Zugangs zu sozialem Wohnen; Förderung von „universell geplanten“ Schnellbusnetzen; obligatorische Zugänglichkeit von privaten Taxis sowie den Miteinbezug von Organisationen für Menschen mit Behinderungen zur Überprüfung von Zugänglichkeit und zur Überwachung des Fortschritts.
5. Beschäftigung und Selbständigkeit unterstützen Berufsausbildung, exible Arbeit, unterstützte Beschä igung und gemeindenahe Rehabilitationsprojekte mit Fokus auf Existenzsicherung sind alles vielversprechende Optionen für den beru ichen Wiedereinstieg von Menschen mit QSL. Soziale Sicherungssysteme sollten verfügbar sein, abhängig vom Kontext und Lebensstandard des Einzelnen; sie sollten jedoch nicht davon abhalten, ins Arbeitsleben zurückzukehren zu wollen.
3. Negative Haltungen gegenüber Menschen mit Querschnittlähmung abbauen Dies kann im Rahmen von allgemeinen Kampagnen zur Sensibilisierung für Behinderung
6. Geeignete Forschung und Datensammlung fördern Es besteht dringender Bedarf zur Steigerung und Verbesserung der Sammlung von Routinedaten über QSL. Entschlüsselte Statistiken über QSL, die die standardisierte Terminologie der Internationalen Klassi kation Externer Ursachen 237
Querschnittlähmung – Internationale Perspektiven
von Verletzungen (ICECI) verwenden, können bei der Analyse von Inzidenztendenzen zu Hilfe genommen werden und dazu beitragen, politische Maßnahmen zu verfolgen. QSL-Register, die Daten direkt von Krankenhäusern erhalten, gemeinsam mit bevölkerungsbasierten LangzeitKohortenstudien, die elementare Lebensbereiche abdecken, sind der beste Weg, um Daten über Querschnittlähmung zu sammeln. Im Bereich der Dienstleistungen werden Daten über Kosten, Ergebnisse und Kostenvorteile benötigt.
■ ■
■
■
Die nächsten Schritte Für die Implementierung dieser Empfehlungen bedarf es der Einbindung verschiedener Sektoren – Gesundheit, Bildung, sozialer Schutz, Arbeit, Verkehrs- und Wohnungswesen – sowie verschiedener Akteure – Regierungen, Zivilgesellscha sorganisationen (einschließlich Organisationen für Menschen mit Behinderung), Fachkrä e, den privaten Sektor sowie Menschen mit QSL und deren Familien. Die Sektoren und Akteure müssen zusammenarbeiten, um einen maximalen Erfolg aus multidisziplinärem Teamwork zu erlangen. Es ist essenziell, dass die einzelnen Länder ihre Maßnahmen den jeweils eigenen spezi schen Kontexten anpassen. Wenn ein Land aufgrund begrenzter Ressourcen nur wenig Spielraum hat, können einige dringliche Maßnahmen (insbesondere solche, die technische Unterstützung und einen Kapazitätsaufbau erfordern) im Rahmen der internationalen Zusammenarbeit integriert werden.
■
■
■
Standards zur nationalen Sammlung von Daten zu QSL fördern. Dies beinhaltet auch zentralisierte QSL-Register; Sicherstellen, dass angemessene Versicherungsleistungen existieren, die Menschen vor den Kosten in Verbindung mit der Verletzung schützen; Bewusstseinsbildungs-, Informations- und Aufklärungsinitiativen fördern, die negative Einstellungen gegenüber Behinderung abbauen; Angemessene Standards hinsichtlich der Zugänglichkeit von Wohnhäusern, Verkehrsmitteln und öffentlichen Gebäuden einführen; Sicherstellen, dass die Bildungspolitik es Kindern und Erwachsenen mit QSL ermöglicht, Schulen und Universitäten zu besuchen, genauso wie andere auch; Sicherstellen, dass Menschen mit QSL Zugang zu beruflicher Rehabilitation haben, die ihnen hilft, sich auf das Berufsleben vorzubereiten; Antidiskriminierungsgesetze gemäß der BRK verabschieden.
Fachleute in den Bereichen Gesundheitsversorgung und Sozialfürsorge und ihre Organisationen können: ■ Angemessene QSL-spezifische Gesundheitsversorgung anbieten, die auf einem multidisziplinären Ansatz basiert, der Menschen mit QSL und ihre Familien miteinbezieht; Menschen mit QSL und ihre Familien stärken, so dass sie sich so gut wie möglich selbst um ihre Gesundheit kümmern können; QSL-relevante Themen in den Lehrplan aufnehmen für Mediziner und andere Fachleute im Gesundheitswesen, um das Bewusstsein für QSL zu stärken und Forschung in diesem Bereich zu fördern;
Regierungen können: ■ ■ In wirksame Primärpräventionsprogramme investieren, die evidenzbasiert sind und respektvoll gegenüber Menschen mit QSL; Die Versorgung in den Bereichen Gesundheit, Rehabilitation und Unterstützungsdienste für Menschen mit QSL verbessern;
■ ■
238
Kapitel 9
Der Weg nach vorne: Empfehlungen
■
Studien durchführen, um die bestmögliche Rehabilitationsmaßnahme zu bestimmen zur Wiederherstellung der Funktionsfähigkeit in verschiedenen Kontexten.
■
Organisationen für Menschen mit Behinderungen und NGOs können: ■ Die Entwicklung von Peer-Netzwerken und Selbsthilfeorganisationen fördern und Programme zur persönlichen Assistenz unterstützen; Bewusstseinsbildungs-, Informations- und Aufklärungsinitiativen fördern, die negative Einstellungen gegenüber Behinderung abbauen; Menschen mit QSL dabei unterstützen an sportlichen, religiösen und kulturellen Aktivitäten teilzunehmen und Freizeitmöglichkeiten wahrzunehmen; Dabei helfen, querschnittgelähmte Menschen und ihre Familien aufzuklären und zu stärken in Bezug auf Themen wie Erhalt der Gesundheit, Hilfe und Unterstützung, Unterkunft, Zugänglichkeit und Mobilität, Bildung und Beschäftigung; Initiativen zur gemeindenahen Rehabilitation in ärmeren und abgelegenen Gegenden aufbauen.
gewährleisten, durch einen koordinierten, ganzheitlichen und multidisziplinären Ansatz im Bereich der Dienste; Menschen mit QSL und ihre Familien als Partner in den Bereichen Versorgungsplanung und Versorgungserbringung mit einbeziehen, sie mit Informationen versorgen und sie einbinden in Entscheidungen, sowie in die Planung, Zielsetzung, Überwachung und Bewertung.
■
Die akademische Welt kann: ■ ■ ■ Die Evidenzbasis für Interventionen erweitern durch die Unterstützung von Forschung im Bereich QSL; Mit Politikern und anderen Schlüsselakteuren zusammenarbeiten, um die Umsetzung der Empfehlungen des Berichts zu fördern; Den Zugang zu spezieller Ausbildung fördern, um sicherzustellen, dass ausreichend geeignete und qualifizierte Gesundheitsfachleute verfügbar sind; Sicherstellen, dass menschenrechtliche Themen in Zusammenhang mit Behinderung bereits in der Grundausbildung auf dem Lehrplan von Lehrern, Ärzten und anderen Gesundheitsfachleuten stehen; Barrieren im Bereich der Teilhabe von querschnittgelähmten Menschen an Hochschulen und in der Forschung abbauen.
■
■
■
■
■
Dienstanbieter können: ■ Dabei helfen, bestehende (und neue) ressourcenbewusste, angemessene und zeitnahe Gesundheitsversorgungsdienste im Bereich QSL zu unterstützen; International vergleichbare Informationen über QSL sammeln und diese Daten in jährlichen Berichten verfügbar machen, durch eine Veröffentlichung im Internet. Die Daten sollten durchsuchbar sein, so dass die Informationen leicht gefunden werden können; Dabei helfen, einen reibungslosen Übergang zwischen stationärer, ambulanter und gemeindenaher Versorgung zu
Der private Sektor kann: ■ ■ In die Entwicklung von angemessenen und erschwinglichen unterstützenden Technologien investieren; Sicherstellen, dass Produkte und Leistungen in Bereichen wie Gesundheit, Sport und Bildung für Menschen mit Behinderung zugänglich sind – darunter auch Menschen mit QSL; Ein universelles Design für neue Produkte und Dienstleistungen einführen;
■
■
■
239
Querschnittlähmung – Internationale Perspektiven
■
Menschen mit QSL einstellen und dabei sicherstellen, dass die Einstellung gleichberechtigt erfolgt, dass angemessene Vorkehrungen getroffen werden und, dass Beschäftigte, die eine QSL erleiden dabei unterstützt werden, an ihren Arbeitsplatz zurückzukehren.
Schlussfolgerung Während die Inzidenz von traumatischer und nicht-traumatischer QSL reduziert werden kann und soll, wird es weiterhin neue Fälle von QSL geben. QSL wird auch weiterhin Menschen in ihren besten Jahren betre en. Die Sicherstellung von adäquaten medizinischen und rehabilitationsmedizinischen Maßnahmen sowie die Gewährleistung von unterstützenden Dienstleistungen und einer zugänglichen Umwelt, tragen dazu bei, den Schicksalsschlag, den die Betroffenen und deren Familien erleiden, zu minimieren. Diese Maßnahmen tragen auch dazu bei, die gesamten Sozialkosten bezüglich Abhängigkeit und Produktivitätsverlust zu reduzieren sowie die Belastung der Betro enen bezüglich Verminderung des Selbstwerts und der Lebensqualität zu verringern. QSL ist vermeidbar, kann überlebt werden und muss gute Gesundheit und soziale Inklusion nicht ausschließen. Regierungen und andere Interessenvertreter sollten jedoch dringend Maßnahmen ergreifen, denn ohne wirksame Maßnahmen hat Querschnittslähmung weiterhin allzu o katastrophale Auswirkungen.
Menschen mit Querschnittlähmung und ihre Familien können: ■ ■ ■ ■ ■ Sich selbst über Themen in Zusammenhang mit QSL und dem Erhalt der Gesundheit informieren; An Peer-Support-Programmen und Selbsthilfeprogrammen teilnehmen; Zu Aufklärungs- und Bewusstseinsbildungsmaßnahmen in der Gemeinschaft beitragen; Möglichkeiten in Anspruch nehmen, die eine frühe Rückkehr in Bildung und Beschäftigung ermöglichen; Sofern angebracht, eine Umschulung oder Selbständigkeit in Betracht ziehen, um die Möglichkeiten zur Existenzsicherung zu verbessern.
Quellen 1. United Nations Department of Economic and Social Affairs, Population Division. World population prospects: the 2012 revision, 2013. DVD Edition. 2. Dahlberg A et al. Prevalence of spinal cord injury in Helsinki. Spinal Cord, 2005, 43:47-50. doi: http://dx.doi.org/10.1038/ sj.sc.3101616 PMID:15520842 3. O’Connor PJ. Prevalence of spinal cord injury in Australia. Spinal Cord, 2005, 43:42-46. doi: http://dx.doi.org/10.1038/ sj.sc.3101666 PMID:15326472 4. Noonan VK et al. Incidence and prevalence of spinal cord injury in Canada: a national perspective. Neuroepidemiology, 2012, 38:219-226. doi: http://dx.doi.org/10.1159/000336014 PMID:22555590 5. New PW et al. Prevalence of non-traumatic spinal cord injury in Victoria, Australia. Spinal Cord, 2013, 51:99-102. doi: http:// dx.doi.org/10.1038/sc.2012.61 PMID:22665222 6. Middleton JW et al. Life expectancy after spinal cord injury: a 50-year study. Spinal Cord, 2012, 50:803-811. doi: http:// dx.doi.org/10.1038/sc.2012.55 PMID:22584284 7. Gosselin RA, Coppotelli C. A follow-up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 8. Lidal IB et al. Mortality after spinal cord injury in Norway. Journal of Rehabilitation Medicine, 2007, 39:145-151. doi: http:// dx.doi.org/10.2340/16501977-0017 PMID:17351697 9. Rathore MFA. Spinal cord injuries in the developing world. In: JH Stone, M Blouin, eds. International Encyclopedia of Rehabilitation, 2013. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/141/ 10. Hagen EM et al. Traumatic spinal cord injuries – incidence, mechanisms and course. Tidsskrift for Den Norske Laegeforening, 2012, 132:831-837. doi: http://dx.doi.org/10.4045/tidsskr.10.0859 PMID:22511097
240
Kapitel 9
Der Weg nach vorne: Empfehlungen
11. Leal-Filho MB et al. Spinal cord injury: epidemiological study of 386 cases with emphasis on those patients admitted more than four hours after the trauma. Arquivos de Neuro-Psiquiatria, 2008, 66:365-368. doi: http://dx.doi.org/10.1590/S0004282X2008000300016 PMID:18641873 12. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http:// dx.doi.org/10.1038/sc.2011.182 PMID:22270190 13. Young AE, Murphy GC. Employment status after spinal cord injury (1992–2005): a review with implications for interpretation, evaluation, further research, and clinical practice. International Journal of Rehabilitation Research, 2009, 32:1-11. doi: http://dx.doi.org/10.1097/MRR.0b013e32831c8b19 PMID:19057392 14. Access Economics for the Victorian Neurotrauma Initiative. The economic cost of spinal cord injury and traumatic brain injury in Australia. 2009 (http://www.tac.vic.gov.au/about-the-tac/our-organisation/research/tac-neurotrauma-research/ vni/the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia.pdf, accessed 9 January 2013). 15. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. 16. Post MWM et al. Services for spinal cord injured: availability and satisfaction. Spinal Cord, 1997, 35:109-115. doi: http:// dx.doi.org/10.1038/sj.sc.3100362 PMID:9044519 17. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:1134-1137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 18. Peden M et al., eds. World report on road traffic injury prevention. Geneva, World Health Organization, 2004. 19. O’Connor P. Trends in spinal cord injury. Accident; Analysis and Prevention, 2006, 38:71–77. doi: http://dx.doi.org/10.1016/j. aap.2005.03.025 PMID:16111641 20. Harries AD et al. The HIV-associated tuberculosis epidemic – when will we act? Lancet, 2010, 375:1906-1919. doi: http:// dx.doi.org/10.1016/S0140-6736(10)60409-6 PMID:20488516 21. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 22. Toriello HV. Policy and Practice Guideline Committee of the American College of Medical Genetics. Policy statement on folic acid and neural tube defects. Genetics in Medicine, 2011, 13:593-596. doi: http://dx.doi.org/10.1097/ GIM.0b013e31821d4188 PMID:21552133 23. De-Regil LM et al. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database of Systematic Reviews, 2010 6:CD007950. Review. PubMed PMID: 20927767. 24. Flour Fortification Initiative. FFI Database. Atlanta, 2012. (http://www.sph.emory.edu/wheatflour/globalmap.php accessed 28 May 2012). 25. Williams LJ et al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995–2002. Pediatrics, 2005, 116:580-586. doi: http://dx.doi.org/10.1542/peds.2005-0592 PMID:16140696 26. Berry RJ et al. Folic Acid Working Group. Fortification of flour with folic acid. Food and Nutrition Bulletin, Review 2010, 31:S22–35. PubMed PMID 20629350. 27. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554
241
Technischer Anhang A
Verwendete Methoden bei systematischen Übersichtsarbeiten von epidemiologischen Ergebnissen (Inzidenz, Prävalenz, Ätiologie, Mortalität, Kosten) Das PRISMA ( e Preferred Reporting Items for Systematic Reviews and Meta-analyses) Statement wurde als Leitlinie verwendet um sicherzustellen, dass eine transparente und umfassende Darstellung von systematischen Übersichtsarbeiten und der Metaanalysen gewährleistet ist (1). PRISMA wird von führenden Organisationen und medizinischen Fachzeitschri en empfohlen (2).
Vorgehensweise bei der Suche Die Datenbanken Pubmed/Medline und EMBASE, Latin American and Caribbean Health Sciences Literature (LILACS), Indian Medlars Centre (IndMed) und African Index Medicus (AIM) wurden nach relevanten Publikationen im Zeitraum zwischen dem 1. Januar 2000 und dem 15. August 2012 durchsucht. In dieser Übersicht wurden Querschnittslähmungen traumatischen und nicht-traumatischen Ursprungs (TQSL, NTQSL) eingeschlossen wie in Kapitel 4 de niert und nach den Internationalen Datensätzen über Querschnittlähmung (International SCI Data Sets) klassi ziert (3–5). Die Datenbanken wurden mit Hilfe von folgenden freien Suchbegri en durchsucht: ‘spinal cord injuries’, ‘spinal cord injury ’, ‘spinal cord lesion’, ‘paraplegi*’, ‘tetraplegi*’, ‘quadriplegi*’, ‘traumatic spinal cord injury ’, ‘spinal cord damage’ und ‘spina bi da’ sowie der Abkürzungen ‘SCI ’, ‘TSCI ’ und ‘NTSCI ’. Weitere ergebnisbezogene freie Begri e waren ‘prevalence’, ‘ incidence’, ‘epidemiology ’, ‘cause of ’, ‘cause of death ’, ‘cost *’, ‘aetiology ’, ‘etiology ’ und ‘mortality ’. Die Volltextsuche wurde mit Hilfe von MeSH (Medical Subject Headings) -Begri en und emenüberschri en nach Querschnittlähmung (QSL) durchgeführt mit den Begri en ‘spinal cord injury ’, ‘paraplegia’, ‘quadriplegia’ und ‘spinal dysraphism’ und nach Ergebnissen mit ‘causality ’, ‘epidemiology ’, ‘ incidence’, ‘prevalence’, ‘mortality ’, ‘etiology ’, ‘cause of death ’ und ‘costs and cost analysis’, sofern in den jeweiligen Datenbanken möglich. Die Literatursuche wurde ohne Einschränkungen auf bestimmte Sprachen durchgeführt; die MeSH Begri ssuche wurde auf 243
Querschnittlähmung – Internationale Perspektiven
Menschen beschränkt; die freie Begri ssuche fand ohne Beschränkungen statt und nur wissenscha liche Artikel, die über einen Abstract verfügten, wurden berücksichtigt. Zusätzlich wurden Quellenangaben von abgerufenen systematischen Übersichtsarbeiten und Literaturübersichten nach weiterführenden Publikationen durchsucht und es wurde eine manuelle Online-Suche nach ‘epub, ahead of print’, nach Artikeln die zuerst online verö entlicht wurden für den Zeitraum 1. August 2012 bis Oktober 2012 (online verfügbar am 8. Oktober 2012) durchgeführt. Die folgenden Fachzeitschri en wurden durchsucht: Spinal Cord, Journal of Spinal Cord Medicine, Spine, Journal of Rehabilitation Medicine, Journal of Neurotrauma, Archives of Physical Medicine and Rehabiliation, PM&R (American Journal of Physical Medicine & Rehabilitation), Epidemiology, International Journal of Epidemiology, American Journal of Epidemiology, European Journal of Epidemiology, Journal of Epidemiology & Community Health, Journal of Clinical Epidemiology, European Spine Journal, Journal of Bone & Joint Surgery, Acta Orthopaedica Scandinavica, Asian Spine Journal, Global Spine Journal, Journal of Neurosurgery: Spine, Neurology India, International Journal of Technology Assessment in Health Care, Journal of Evaluation in Clinical Practice und Journal of Health Services Research & Policy. Zuletzt wurden Online-Seiten von Registern für Querschnittslähmung nach Daten durchsucht. Relevante Publikationen mit Veröffentlichungsdatum nach dem 1. Januar 2000, die zufällig mittels einer manuellen Suche während der Entwicklung des Berichts gefunden wurden, wurden als ergänzende Informationen in den entsprechenden Abschnitten verwendet. Bezüglich der Kosten-Ergebnisse wurden in Einzelfällen auch besonders wichtige Publikationen mit Datum vor 2000 einbezogen, die bei der Suche in Quellenangaben von Publikationen gefunden wurden.
Einschlusskriterien Nach einer Dublettenprüfung wurden Titel und Abstracts der erhaltenen Ergebnisse von zwei Reviewern nach Einschlusskriterien für die systematische Überprüfung durchsucht. Falls aufgrund des Abstracts keine Einschlusskriterien bestimmt werden konnten, wurden die ausführlichen Artikel bescha , wenn notwendig übersetzt und überprü . Unsicherheiten wurden durch Konsens einer Gruppe bestehend aus fünf Forschern beseitigt. Für die Ergebnisse ‘ incidence’ und ‘prevalence’ wurden Verö entlichungen in die Übersichtsarbeit einbezogen, wenn: (1) die Population im Kontext der allgemeinen Bevölkerung beschrieben wurde; und (2) hauptätiologische Untergruppen einschlossen wurden (Paraplegie, Tetraplegie, TQSL und NTQSL, Spina bi da). Für die Begri ssuche ‘mortality ’ mussten die Artikel mindestens eine oder mehrere der folgenden De nitionen beinhalten: (1) Mortalitätsraten (geschichtet oder nicht); (2) relative Mortalität; (3) standardisierte Mortalitätsraten (SMR) und (4) Lebenserwartung. Bei ‘etiology ’ wurden Studien einbezogen, wenn sie über Folgendes berichteten: (1) TQSL oder NTQSL; (2) Unterteilung von TQSL und NTQSLnach Untergruppen der Verletzungsursachen (d. h. Autounfälle, Sport, Gewalt) und (3) Prozentsätzen der Untergruppen. Zur vergleichenden Analyse wurden ätiologische Daten mit Hilfe der von ISCoS empfohlenen Klassi kation erneut klassi ziert (3, 5), wenn nötig.
Ausschlusskriterien Für alle Ergebnisse wurden Studien ausgeschlossen, die ausschließlich über eine Untergruppe von QSL Erkrankungen berichteten (Osteochondrodysplasie, Neurosyphilis, Poliomyelitis, HTL V-Infektion, hereditäre spastische Spinalparalyse, Locked-In Syndrom, schla e Lähmung, Brown-Sequard Syndrom, zentrales Rückenmarkssyndrom, SCIWORA, bösartige Kompression des Rückenmarks), über
244
Technischer Anhang A
spezi sche Komplikationen oder Begleiterkrankungen (nach Gefäß- oder Wirbelsäulenchirurgie, Krebs), ethnische Minderheiten und Beschä igungshintergründe (Kriegsversehrte), individuell bedingte Umstände (arbeitsbedingte QSL) falls nicht repräsentativ für die gesamte Population und Behandlungskostenvergleiche oder Teilbehandlung ( rombose, Gefäßverschluss, Medikamente). Das Gleiche wurde für Einzelfallregister (z. B. Autounfall in Traumaregistern) oder Fallstudien angewendet. Im Fall von Spina bi da wurden Daten nur aus Artikeln extrahiert, die Inzidenzraten untersuchten und, wenn verfügbar, von Prä- und Post- Forti kationsstudien. Des Weiteren wurden Studien ausgeschlossen, deren Daten inkomplett waren (d. h. fehlende Todeszahlen und QSL-Fälle). Die Daten des Spinal Cord Injury Model System in den USA wurden hauptsächlich aus dem Bericht von 2011 entnommen, da sich dieser als die ergiebigste und detailgenaueste Datendarstellung erwies in Bezug auf das Strati zieren soziodemogra scher und zeitlicher Domänen (6). Waren die Artikel in einer Fremdsprache verfasst worden und erfüllten die Einschlusskriterien, überprü e die Gruppe die englischen Abstracts und entschied sich für die Übersetzung der repräsentativsten Studien zur Datenextraktion. Bei Dubletten oder sich überlappenden Studien, wurde die neueste und/oder umfassendste Studie für die systematischen Übersichtsarbeit ausgewählt.
Daten wurden in Übersichtstabellen gegenübergestellt und mit den Originalberichten von drei Gruppenmitgliedern verglichen und überprü . Für den Fall, dass relevante Daten nur in Form von Graphiken zur Verfügung standen (z. B. ein sogenannter ‘Kaplan-Meier plot’ für kumulatives Überleben), wurden gescannte Gra ken umgewandelt mit Hilfe einer automatischen Digitalisierungsso ware. Für Studien, die Informationen über die Gesamtzahl der Fälle von TQSL und NTQSL in einem bestimmten Zeitraum innerhalb eines klar de nierten Einzugsgebiets (meistens Länder) lieferten, jedoch keine Inzidenzraten, wurden länderspezi sche Schätzungen über die Populationsgröße aus verfügbaren Internetquellen entnommen (landesspezi sches nationales statistisches Bundesamt oder Datenbank des Global Burden of Disease (GBD) Projekts) zur Schätzung von rohen Inzidenzraten.
Neuberechnung der Schätzungen Falls keine durchschnittlichen Populationszahlen zur Verfügung standen, wurden Schätzungen des Populationsdurchschnitts von verfügbaren strati zierten Schätzungen abgeleitet, die gemäß der relativen Population der jeweiligen Schicht gewichtet wurden.
Abbildung 2.5. Verteilung von TQSL nach WHO-Regionen Studien, die über die Ätiologie TQSL bei Erwachsenen und bei Erwachsenen/pädiatrischen Populationen gemischt berichteten, wurden für die Berechnung regionaler Gesamtwerte der Ätiologie ausgewählt, basierend auf einer Reihe von Kriterien. Falls verfügbar, wurden aus landesweiten Studien oder den jeweils umfassendsten und neuesten Studien aus den letzten Jahren diejenigen ausgewählt, die sowohl über Straßenverkehrsunfälle als auch Stürze berichteten. Bei Überlappungen in bestimmten Berichtsjahren wurden Studien mit einer geringeren 245
Datenextraktion Aus Gesamtverö entlichungen wurden Daten entnommen bezüglich der Hauptmerkmale der Studie, Informationen über die Ein- und Ausschlusskriterien und alle relevanten Daten für die Ergebnisse (Inzidenz, Prävalenz, Ätiologie, Mortaliltät, Kosten). Die Qualität der Datenextraktion wurde anhand bestehender systematischer Reviews getestet, die bei der Suche als Ergebnis vorgeschlagen wurden, um die gelieferten Daten zu überprüfen. Die endgültigen
Querschnittlähmung – Internationale Perspektiven
Strati zierung der Ätiologien oder der Ätiologiearten in der Kategorie „ Andere“ ausgeschlossen. Für die USA wurde der neueste, 2011 verö entlichte Jahresbericht des National Spinal Cord Injury Statistical Center (NSCISC) (6) als primäre Datenquelle verwendet, auch um Probleme mit der Datenüberlappung in Bezug auf Jahr und Untergruppen zu vermeiden, die in bestimmten Studien verwendet wurden unter Berufung auf Daten aus dem Model System. Regionale Schätzungen der Gesamtätiologie von TQSL wurden in zwei Phasen erarbeitet. Zuerst wurde eine landesspezi sche Ätiologie von TQSL abgeleitet mittels der gewichteten Durchschnittsverteilung von Ursachen durch
Faktorisieren des Stichprobenumfangs aus den verfügbaren Studien. Danach wurde eine regionale Schätzung von TQSL berechnet mittels der gewichteten Durchschnittsverteilung von ursachenspezi scher TQSL nach Ländern durch Faktorisieren der Populationsgröße von 2011 von den Ländern, die Daten zur Verfügung stellten. Populationsdaten wurden aus Internetquellen der Statistikabteilung der Vereinten Nationen (UNSD) (7) entnommen. Es gilt zu beachten, dass verfügbare Daten für Taiwan und China (8) zur Berechnung der Schätzung für China verwendet wurden. Dies hatte jedoch nur geringe Auswirkungen auf die Gesamtschätzung aufgrund des relativ kleinen Stichprobenumfangs.
Quellen 1. Liberati A et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Medicine, 2009, 6:e1000100. doi: http://dx.doi.org/10.1371/journal. pmed.1000100 PMID:19621070 Endorsers PRISMA. (http://www.prisma-statement.org/endorsers.htm, accessed 26.6.2013). Biering-Sørensen F et al. International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi. org/10.1038/sj.sc.3101930 PMID:16955072 ISCIDS. The International SCI Data Sets. International Spinal Cord Society (ISCoS) (http://www.iscos.org.uk/page. php?content=20, accessed 22 May 2013). New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord, advance online publication, January 2013. doi: 10.1038/sc.2012.160. doi: http://dx.doi.org/10.1038/sc.2012.160 National Spinal Cord Injury Statistical Center. Complete Public Version of the 2011 Annual Statistical Report for the Spinal Cord Injury Model System. Birmingham, Alabama, 2011. United Nations Statistics Division. (http://unstats.un.org, accessed 26.6.2013). Wu JC et al. Effects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of Neurotrauma, 2012, 29:889-897. doi: http:// dx.doi.org/10.1089/neu.2011.1777 PMID:21510819
2. 3. 4. 5. 6. 7. 8.
246
Technischer Anhang B
Begrenztheit der in Kapitel 2 verwendeten Datenquellen Es wurden keine Mühen gespart, um die bestmöglichen verfügbaren Daten zu verwenden; dennoch gibt es einige Grenzen in Bezug auf die verwendeten Daten, nämlich: ■ Variationen bei der Falldefinition von Querschnittlähmung (QSL) und den Einschlusskriterien; ■ Variationen in der Repräsentativität der verfügbaren Daten von QSL. Die tatsächliche Repräsentativität der Daten ist nicht immer offensichtlich, d. h. ob nationale Statistiken auf nationale, regionale oder unterregionale Daten zurückgreifen; ■ Variationen in Bezug auf die Vollständigkeit der erhobenen (lokalen oder nationalen) Daten; ■ unzureichende Qualität der methodischen Berichterstattung. Mehrere spezi sche Begrenzungen wurden im Zusammenhang mit den in diesem Bericht verwendeten Hauptindikatoren wie folgt identi ziert: ■ Inzidenz: Die Ausgangspopulation der Fälle (Einzugsgebiet) ist oft unzureichend abgesteckt, insbesondere bei Studien, die regionale Daten, Daten von mehreren Zentren oder von einzelnen Zentren erheben (z. B. ist nicht immer bekannt, ob die jeweilige Klinik das einzige Überweisungszentrum für QSL ist). Außerdem ist es in Bezug auf die Inzidenz von traumatischer QSL (TQSL) oft unklar, ob einzelne Betroffene, die zum Zeitpunkt des Eintritts der QSL versterben, inbegriffen sind. Bezüglich der Inzidenz von nicht-traumatischer QSL (NTQSL) ist oft unklar, ob Menschen mit QSL im Stadium der Sterbebegleitung eingeschlossen sind. ■ Prävalenz: Die Referenzbevölkerung der Fälle ist oft unzureichend definiert. Von den meisten Ländern stehen keine direkten Prävalenzdaten zur Verfügung und Näherungsdaten sind schwer zugänglich (z. B. Versicherungsdaten, Daten über Berufsunfähigkeitsrenten). Als Folge davon werden Schätzungen der Prävalenz häufig aus Modellierungsstudien abgeleitet, die auf einer schwachen Evidenzbasis beruhen, bloße Annahmen beinhalten, und daher einen hohen Grad an Unsicherheit aufweisen.
247
Querschnittlähmung – Internationale Perspektiven
■
■
Mortalität: Methodische Kriterien und Verfahren zum Ein- und Ausschluss von Fällen in der Bewertung von kollektiver Sterblichkeit (z. B. Kaplan-Meier Methode) oder Modellierung von Mortalitätsraten oder Risikofaktoren für Mortalität (Ereigniszeitanalyse, Cox Regression) werden meistens nicht beschrieben. Nur wenige Studien berichten über Versäumnisse bei der Nachsorgeuntersuchung und Vollständigkeit bei der Ermittlung der Mortalität (rechtszensierte Daten). Des Weiteren ist es oft unklar, ob frühe Todesfälle in die Analyse eingeschlossen werden (linkszentrierte Daten). Ätiologie: Zukünftige Studien sollten sich bei der Klassifizierung und hierarchischen Berichterstattung von TQSL und NTQSL strikt an die Empfehlungen von ISCoS halten. Zudem ist eine systematische Dokumentierung notwendig für NTQSL-Fälle in Bezug auf Arbeit und Selbstbeschädigung (Selbstmordversuche) (d. h. zusätzlich zur ISCoS Klassifizierung; Stürze geschichtet nach Arbeit und Selbstmord, etc.)
248
Technischer Anhang C
Metaanalyse von Spina bifida Daten Es wurde eine Random-E ects-Metaanalyse der extrahierten Daten über die Jahresinzidenz* für Spina bi da durchgeführt, um eine grobe Schätzung über drei verfügbare Datentypen abzuleiten. Datentypen mit zunehmender Vollständigkeit und bevorzugter Verwendung in der Analyse in aufsteigender Reihenfolge beinhalteten nur Lebendgeburten; Daten über Lebend- und Totgeburten; sowie Lebend-, Totgeburten und Daten über Schwangerscha sabbrüche. Metaanalysen wurden mit Hilfe von Version 12.1 des Statistikpakets STATA durchgeführt mittels des Befehls ‘metan’. Die jährlichen Inzidenzraten mit Standardfehlern wurden als Punktschätzungen respektive Varianzmaßnahmen für Einzelstudien verwendet. Ergebnisse der Analyse werden gra sch als Forest Plots dargestellt und nach Datentypen geschichtet. Manche Abweichungen, die bei den Inzidenzraten berichtet wurden, können auf verschiedenen Faktoren basieren wie z. B. ethnische Herkun , sozioökonomischer Status, Messtechniken und kulturelle Ein üsse (1, 2). Um die Auswirkungen der festgestellten Variation auf die Gesamtraten zu identi zieren, wurde eine Sensibilitätsanalyse durchgeführt, bei der Studien ausgeschlossen wurden, die besonders heterogen zu sein schienen im Vergleich zur Mehrheit der Studien, nämlich die Studie, die von Alasfoor et al. im Oman durchgeführt wurde (3) sowie Studien über China von Li et al. (4, 5). Schließt man nur die Oman Studie aus, el die Inzidenzrate von Spina bi da auf 7,4/10.000. Bei Ausschluss der beiden Studien von Li et al. lag die Gesamtinzidenzrate bei 8,4/10.000, während der Ausschluss aller, sowohl der Oman Studie als auch der beiden China Studien, zu einer Inzidenzrate von 7,2/10.000 führte. Zusätzlich zu den Ergebnissen der Metaanalyse wurde eine Analyse der Untergruppen durchgeführt, die den Ein uss der in jeder Studie verwendeten Datentypen für die Metaanlyse der Spina bi da-Inzidenzrate untersuchte. Die Untergruppenanalyse zeigte, dass die beobachtete Inzidenzrate in Studien, die Lebendgeburtendaten verwendeten, nur bei 4,5/10.000 lag im Vergleich zur errechneten Inzidenzrate bei Einschluss aller Studien ohne Berücksichtigung des Datentyps, die bei 8,4/10.000 lag.
249
Querschnittlähmung – Internationale Perspektiven
*Anmerkung: In der Literatur über Spina bi da werden die Begri e ‘Prävalenz’ und ‘Inzidenz’ nicht konsistent verwendet. Rothman et al. (6) de niert den Anteil der Neugeborenen mit einer Form der Fehlbildung als Prävalenzanteil und nicht als Inzidenzrate. Die Inzidenz von Fehlbildungen entspricht dann dem Vorkommen bei der Embryopopulation. Nichtsdestotrotz wird der Begri ‘Inzidenz’ in diesem Bericht für Spina bi da-Raten verwendet, da Studien eingeschlossen wurden, die verschiedene Datentypen verwendeten, einschließlich Daten über Schwangerscha sabbrüche.
Quellen 1. Gardner BR, Strickland M, Correa A. Application of the automated spatial surveillance program to birth defects surveillance data. [Part A]. Birth Defects Research Part A., Clinical and Molecular Teratology Teratol, 2007, 79:559-564. doi: http://dx.doi. org/10.1002/bdra.20363 PMID:17385687 Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 Li ZW et al. Prevalence of major external birth defects in high and low risk areas in China, 2003. Zhonghua Liu Xing Bing Xue Za Zhi, 2005, 26:252-257. PMID:15941530 Li ZW et al. Extremely high prevalence of neural tube defects in a 4-county area in Shanxi Province, China. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2006, 76:237-240. doi: http://dx.doi.org/10.1002/bdra.20248 PMID:16575897 Rothman KJ, Greenland S, Lash TL, eds. Modern Epidemiology. 3rd ed. Philadelphia, Wolters Kluwer Health/Lippincott Williams & Wilkins, 2008.
2. 3. 4. 5. 6.
250
Technischer Anhang D
Metaanalyse der Auswirkungen einer Nahrungsmittelanreicherung mit Folsäure auf Spina bifida Inzidenzraten Eine Schätzung der Last (zusätzliche Fälle von Spina bi da Schwangerscha en aufgrund einer mangelnden Nahrungsmittelanreicherung mit Folsäure („folic acid food forti cation“ (FAFF)) fand unter Berücksichtigung folgender Annahmen und Gesichtspunkte statt: Die Anzahl der Lebendgeburten weltweit dient als Näherungswert für alle Schwangerscha en (einschließlich Fehlgeburten, Totgeburten und Schwangerscha sabbrüchen), da Spina bi da eine relativ seltene Erkrankung ist. Aus diesem Grund hätten nichterfasste Fälle keine bedeutenden Auswirkungen auf die geschätzte Inzidenz und FAFF hätte ähnliche Auswirkungen auf die weltweite Spina bi da Inzidenz. Für die Berechnung der Last wurden regionale Schätzungen von Spina bi da Inzidenzraten berechnet um regionale Abweichungen zu berücksichtigen und dadurch eine genauere Schätzung zu erhalten. Die geschätzte Zahl der potenziell vermeidbaren Spina bi da-Schwangerscha en basierte auf der E ektstärke von FAFF, die ausschließlich auf Grundlage der Studien berechnet wurden, die eine Inzidenzrate (IR) von Spina bi da bei Lebendgeburten enthielten, da weltweite Geburtsdaten lediglich für Lebendgeburten verfügbar waren. Zusätzlich wurde eine Metaregression durchgeführt, um zu bestimmen ob die zwischen den Studien bestehende Heterogenität mit bestimmten gemessenen Kovariaten erklärt werden könnte. Hierzu zählten die Inzidenzrate vor der Anreicherung mit Folsäure (Prä-FAFF-Inzidenzrate) und die verwendete Datenkategorie (nur Lebendgeburten, Lebend-, Totgeburten oder Schwangerscha sabbrüche). Die Metaregression wurde mit Version 12.1 von STATA mit dem Befehl ‘metareg’ durchgeführt. Die Ergebnisse der Metaregression ließen darauf schließen, dass die Spina bi da-Inzidenzrate vor der Einführung der FAFF-Gesetzgebung in einem signi kanten Zusammenhang mit der Wirkung von FAFF stand. Es wurde jedoch kein signi kanter Zusammenhang zwischen der verwendeten Geburtsdaten-Kategorie und den Auswirkungen von FAFF beobachtet. Insgesamt lieferte das Modell eine Erklärung für 92 % der festgestellten Heterogenität bei den ursprünglichen Metaanalysen (vgl. Abbildung D.1). Der Ein uss von Prä-FAFF 251
Glossar
Angemessene Vorkehrungen (“Reasonable Accomodations”) Erforderliche und angemessene Veränderungen oder Anpassungen, die keine unverhältnismäßige oder unbillige Belastung darstellen, um sicherzustellen, dass Menschen mit Behinderungen in gleichem Maße ihre Menschenrechte genießen können, wie andere Menschen.
abgesichert, dauerha beschä igt und geund befördert werden. Beispiele hierfür sind Dienste der beru ichen Ausbildung, Beratung und Stellenvermittlung.
Busse mit Absenkfunktion Busse, die auf der Einstiegsseite abgesenkt werden können, um Menschen mit eingeschränkter Mobilität den Einstieg zu erleichtern.
Begleiterkrankung Zusätzliches Gesundheitsproblem, das unabhängig vom primären Gesundheitsproblem au ritt.
Druckgeschwüre (Dekubitus) Lokale Verletzungen der Haut und des darunter liegenden Gewebes, normalerweise über einem Knochen, infolge von Druck allein oder in Kombination mit Reibung. Das Ausmaß kann von leicht wunden Stellen oder kleinen Wunden bis hin zu schwerwiegenden Gewebeschäden reichen.
Behinderung Gemäß ICF ein Oberbegri für Schädigungen, Beeinträchtigungen der Aktivität und Einschränkungen der Teilhabe. Behinderung bezeichnet die negativen Aspekte der Interaktion zwischen einer Person (mit einem Gesundheitsproblem) und ihren Kontextfaktoren (Umwelt- und personenbezogene Faktoren).
Funktionsfähigkeit In der ICF ein Oberbegri für Körperfunktionen, Körperstrukturen, Aktivitäten und Teilhabe. Funktionsfähigkeit bezeichnet die positiven Aspekte der Interaktion zwischen einer Person (mit einem Gesundheitsproblem) und ihren Kontextfaktoren (Umweltund personenbezogenen Faktoren). Der Begri “Funktion” bezieht sich ausschließlich auf die Körperfunktionen.
Berufliche Rehabilitation Programme mit dem Ziel, die Fähigkeiten von Menschen mit Behinderungen wiederherzustellen oder zu entwickeln, damit sie in einer angemessenen Beschä igung
253
Querschnittlähmung – Internationale Perspektiven
Gemeindenahe Rehabilitation (Community-based rehabilitation, CBR) Strategie innerhalb der allgemeinen gemeinscha lichen Entwicklung zur Rehabilitation, Chancengleichheit, Armutsbekämpfung und sozialen Eingliederung von Menschen mit Behinderung. Umgesetzt wird diese Strategie durch die gemeinsamen Bemühungen von Menschen mit Behinderungen, ihren Familien und relevanten Regierungsund Nichtregierungsorganisationen in den Dienstleitungsbereichen Gesundheit, Bildung, Beruf, Soziales etc.
Internationale Klassifikation der Funktionsfähigkeit, Behinderung und Gesundheit (ICF) WHO Klassi kation, die einen einheitlichen standardisierten Sprachgebrauch und Rahmen scha zur Beschreibung von Gesundheit und gesundheitsbezogenen Zuständen in Bezug auf die Funktionsfähigkeit in Zusammenhang mit krankheitsbedingten Erfahrungen.
Internationale Klassifikation Externer Ursachen von Verletzungen (ICECI) WHO Klassi kation, die Verletzungsarten, ihre Umstände und Ursachen klassi ziert und genutzt wird, um das Au reten von Verletzungen zu messen und zu überwachen.
Gesundheitsproblem: sekundäres Gesundheitsproblem Ein zusätzliches Gesundheitsproblem, das sich infolge einer erhöhten Anfälligkeit ergibt, die durch das primäre Gesundheitsproblem einer Person verursacht wird, z.B. Dekubitus.
Inzidenz von Querschnittlähmungen Anzahl neuer Fälle von Querschnittlähmungen in einem bestimmten Zeitraum.
Internationale Datensätze über Querschnittlähmung (International SCI Data Sets) Datensätze bestehend aus Daten über Kernkategorien von physiologischen und psychologischen Besonderheiten in Verbindung mit Rückenmarksverletzungen sowie der Lebensqualität Betro ener. Diese Datensätze sind geeignet im Rahmen von wissenscha lichen Versuchen verwendet zu werden, um neue erapiemöglichkeiten sowie Strategien und Geräte im Bereich der Rehabilitation zu testen.
Kurzzeitpflege Kurzzeitige professionelle P ege von Menschen, die P ege benötigen und andernfalls dauerha in einer Einrichtung außerhalb des eigenen Zuhauses untergebracht werden müssten, mit dem Ziel der Entlastung von „informellen P egekrä en“, wie etwa Familienmitgliedern.
Nicht-traumatische Querschnittlähmung (NTQSL) Alle Schädigungen des Rückenmarks mit nicht-traumatischer Ursache, z.B. angeborene/genetische Fehlbildungen, wie etwa Spina bi da oder erworbene Schädigungen, beispielsweise durch eine Infektion, Unterbrechung der Blutversorgung (Infarkt),
254
Glossar
Druck durch einen Krebstumor oder einen Geschwulst oder durch langsame Degeneration der Wirbel infolge von Osteoarthritis.
Rückenmarks, die Funktionsausfälle oder -einschränkungen zur Folge haben.
Paratransit-Service Alternatives System der exiblen Beförderung mit privaten oder ö entlichen Verkehrsmitteln (z.B. Minibusse oder Taxis), ohne festgelegte Routen oder Fahrpläne. Dieses System wurde eingeführt zur bedarfsgesteuerten Beförderung von Menschen mit Behinderung, älteren Menschen oder Menschen, denen die Nutzung herkömmlicher Verkehrsmittel nicht möglich ist. Auch “Sonderfahrdienste” genannt.
Register der Querschnittlähmungen Datenbank in der einheitlich klinische und andere Informationen über Querschnittlähmung in der Bevölkerung über einen längeren Zeitraum gesammelt werden, um die Auswirkungen auf die Bevölkerung zu wissenscha lichen, klinischen und politischen Zwecken zu erfassen.
Rehabilitation Maßnahmen zur Unterstützung von Menschen, die Behinderung erfahren oder erfahren könnten. Ziel der Maßnahmen ist die Erreichung oder Aufrechterhaltung der optimalen Funktionsfähigkeit dieser Menschen in Interaktion mit ihrer Umwelt.
Prävalenz von Querschnittlähmung (QSL) Gesamtanzahl aller Fälle von QSL in einer bestimmten Bevölkerungsgruppe zu einer gegebenen Zeit.
Reisekette Alle Elemente einer Reise vom Start bis zum Ziel, einschließlich des Zugangs für Fußgänger, der Fahrzeuge und der Umsteigepunkte
Prothetiker/Orthetiker Spezialist im Bereich Gesundheitswesen, der prothetische und orthetische Versorgung und andere mobilitätsbezogene Hilfsmittel zur Verbesserung der Funktionsfähigkeit anbietet. Bei der orthetischen Versorgung kommen externe Hilfsmittel zum Verbessern der Funktionsfähigkeit, Stützen oder Begradigen eines Körperteils zum Einsatz. Mit prothetischen Interventionen wird ein Körperteil mit einem externen Hilfsmittel künstlich ersetzt.
Schädigung Gemäß ICF eine signi kante Abweichung der Körperstruktur oder der physiologischen Funktion von Körpersystemen (einschließlich mentaler Funktionen) auf Grundlage statistischer Bevölkerungsnormen.
Querschnittlähmung (QSL) Schädigung des Rückenmarks mit traumatischer oder nicht-traumatischer Ursache (vgl. De nition von traumatischer und nicht-traumatischer QSL in diesem Glossar). Es handelt sich um Schädigungen oder Traumata des
Schulen – inklusive und integrierte Schulen sowie Sonderschulen An inklusiven Schulen werden Kinder mit Behinderungen zusammen mit altersgemäßen Mitschülern in Regelklassen unterrichtet. Sie verfolgen dort den Unterrichtssto in machbarem Umfang und erhalten je nach Bedarf zusätzliche Ressourcen 255
Querschnittlähmung – Internationale Perspektiven
und Unterstützung. Integrierte Schulen sind Schulen, die für Kinder mit Behinderungen separate Klassen und zusätzliche Ressourcen bereitstellen und an Regelschulen angeschlossen sind. Sonderschulen (auch „segregierte“ Schulen genannt) bieten hochspezialisierte Dienste für Kinder mit Behinderungen an und sind von allgemeineren Bildungseinrichtungen getrennt.
Prinzip verp ichten sich diese Länder nach und nach gemäß ihrer Möglichkeiten sowie gemäß der Verfügbarkeit ihrer Ressourcen, Fortschritte zu erzielen.
Technische Hilfsmittel und Unterstützende Technologien (UT) Technik, die konstruiert, hergestellt oder angepasst wurde, um Menschen bei der Ausführung einer bestimmten Aufgabe zu helfen. Für Menschen mit Behinderungen kann es speziell hergestellte oder allgemein erhältliche Produkte geben.
Soziale Absicherung Soziale Programme zur Minderung von Deprivation und Reduzierung nicht abgedeckter Bedürfnisse verursacht durch bestimmte Umstände, wie etwa Armut, Arbeitslosigkeit, Alter und Behinderung.
Traumatische Querschnittlähmung (TQSL) Jede Verletzung des Rückenmarks, die durch ein Trauma verursacht wurde oder jede Schädigung, die durch Kra einwirkungen jeglichen Ausmaßes von außen zugeführt wurde, z.B. durch Verkehrsunfälle, Stürze oder durch gewalttätige Übergri e.
Sozialwohnungen Sozialwohnungen sind Wohnungen, die in der Regel von der Gemeindeverwaltung oder Nichtregierungsorganisationen zu einem geringen Preis und in sicherer Weise zur Verfügung gestellt werden für Personen mit Wohnungsbedarf (auch „erschwinglicher Wohnraum“ oder „sozialer Wohnungsbau“ genannt).
Umweltfaktoren In der ICF bezieht sich dieser Begri auf die „materielle, soziale und einstellungsbezogene Umwelt, in der Menschen leben und ihr Dasein entfalten“. Dazu gehören z. B. Produkte und Technologien, die natürliche Umwelt, Unterstützung und Beziehungen, Einstellungen sowie Dienste, Systeme und Handlungsgrundsätze.
Sterblichkeitsrate Rate der Todesfälle innerhalb einer bestimmten Bevölkerungsgruppe oder Gruppe von Personen in einem bestimmten Gebiet und festgelegten Zeitraum.
Sukzessive Umsetzung Prinzip der Menschenrechte, mit dem anerkannt werden soll, dass einige wirtscha liche und soziale Grundrechte – wie etwa das Recht auf Gesundheitsversorgung – für einige Länder kurzfristig sehr schwierig umzusetzen sind, beispielsweise aufgrund von mangelnden Ressourcen. Laut diesem 256
Universelles Design Die Gestaltung von Produkten, Umgebungen, Programmen und Diensten mit der Prämisse, dass alle Menschen diese nutzen können, und zwar im größtmöglichen Umfang und ohne erforderliche Anpassung oder spezielle Gestaltung.
Glossar
UN-Konvention über die Rechte von Menschen mit Behinderungen(BRK) Internationaler Vertrag, der 2006 von der UN angenommen wurde und sowohl allgemeine Menschenrechtsprinzipien, wie Würde, Nichtdiskriminierung, Teilhabe, Zugänglichkeit und Gleichberechtigung für Menschen mit Behinderung festlegt, als auch spezi sche Menschenrechte in Bezug auf alle Bereiche des gesellscha lichen Lebens, z.B. Familie, Gemeinscha , Bildung, Beschä igung und Zugang zu Gesundheitsversorgung und sozialen Ressourcen. Die BRK verfolgt explizit zwei Dimensionen der Entwicklung: Die soziale und die wirtscha liche.
Zugängliche Umgebungen Natürliche und von Menschenhand geschaffene Umgebungen, die durch die Beseitigung von Barrieren und die Schaffung geeigneter Voraussetzungen die Teilhabe einer Person unterstützen.
Zugänglichkeit Zugänglichkeit beschreibt das Maß, in dem ein Umfeld, ein Dienst oder ein Produkt von so vielen Menschen wie möglich, insbesondere von Menschen mit Behinderungen, genutzt werden kann.
Zugänglichkeitsstandard Ein Standard ist eine Qualitätsstufe, die als Norm gilt. Das Prinzip der Zugänglichkeit kann gesetzlich oder vertraglich vorgeschrieben sein und dann durch Vorschriften, Standards oder Leitregeln spezi ziert werden, deren Einhaltung obligatorisch oder freiwillig sein kann.
257
Index
A Able Disabled All People Together (ADAPT) 205 Afghanistan kleine Einrichtungen für QSL 116 QSL infolge von Gewalt 23
Atmen 81 Atmungssystem 81 Ausbildung 209 beruflich 209-211 Beschäftigte ohne einschlägige medizinische Ausbildung 122 Bewältigungsstrategie 158 Familien 105 persönliche Assistenten 151 Probleme im Bereich Zugänglichkeit 183 Rehabilitationsfachleute 121 Veränderung der Einstellungen 162
Afrika Spina bifida 117, 149, 201 unterstützende Technologie 110-111 Verletzungen im Bergbau 62-63 Wohnungen [Wohnverhältnisse, Wohnungsbau, Unterkunft] 174
akademische Welt 239 Akteure 238 Aktivität, Einschränkungen 61, 79, 87-88 Akutversorgung (s. auch Versorgung vor der Einlieferung ins Krankenhaus [Erstversorgung]) 77, 83-84, 117, 235 Akzeptanz 116 Alkohol am Steuer, Gesetze 55 Alter nicht traumatische QSL 17, 27 traumatische QSL 17, 24
Australien Einstellungen von Fachleuten der Gesundheitsberufe 145-146 Erstversorgung 30 fliegende Kliniken 117-118 Inzidenz von nicht-traumatischer QSL 19, 19, -21, 25, 27 Kosten von QSL 31-32 Personal 120-121 Prävalenz von QSL 18, 19, 18-19, 232 Probleme im Bereich Einkommen 233 QSL infolge von Gewalt 23 Reduzierung von QSL durch Verkehrsunfälle 234 sekundäre Gesundheitsprobleme 30 Verfügbarkeit von Diensten 100 Wohnungsverzeichnisse 181 Zentralregister von QSL 31-32, 34
alternde Bevölkerung 17, 30, 179, 181 Americans with Disabilities Act (1990) 177, 213 Anpassung zu Hause 178 an QSL 143, 148, 155-160
Antidiskriminierungsgesetze 184, 213, 219 Anziehhilfen 93 Arbeitsunfall 5 Armut 3 ASIA Impairment Scale (ASIA A-E) 159 Aspiration 81 Assistent, persönlicher 144, 150-151, 204 Assistenztiere 215 Assistive Technology Act (1998) 126 Atelektase 81 Ätiologie von QSL 16, 22, 24-25, 36
Auswirkungen von QSL (s. auch mentale Gesundheit) 207 Autofahren 88, 92 Autoimmunkrankheiten 27 autonome neurologische Funktion 79 Autonomie 113, 143 fördern 237
B Back-Up Trust 158 baden 88
259
Querschnittlähmung – Internationale Perspektiven
Bahnsysteme 175, 182 Bangladesch Einstellungen des Umfelds 144 Probleme im Bereich Beschäftigung 208, 212-213 soziale Unterstützung 149
Personenbeförderung 183 QSL infolge von Gewalt 23
Busse mit Absenkfunktion 253
Beatmung, mechanische 81 Bedürfnisse bei der Gesundheitsversorgung Akutversorgung 95 Barrieren beim Zugang zu Dienstleistungen 234 Empfehlungen 97 Erhaltung der Gesundheit Mortalitätsrisiko postakute Versorgung 84-86 Rehabilitation 84-90 unerfüllte Bedürfnisse 109-111 Versorgung vor der Krankenhauseinlieferung [Erstversorgung] 77, 83-84, 235
C China familiäre Beziehungen 152 Inzidenz von QSL 17 partnerschaftliche Beziehungen 152 Rehabilitation nach Erdbeben von Sichuan 113 sturzbedingte QSL 17, 17
Begleiterkrankung 82, 235, 245, 253 Behandlung konservative 84 von QSL 114-115, 129
College Studium 199, 204 Computertechnologie 54, 93, 129 Consortium for Research on Educational Access, Transitions and Equity (CREATE) 203 Conus medullaris 5 Coping effectiveness training 157 Council of Canadians with Disabilities 177 CREATE 203
Behindertenorganisationen 237 Behindertenproblematik, Sensibilisierung 177 Behinderung Definition 244, 255 konzeptuelle Veränderung 7 Umgang der Gesellschaft mit 7-8
D Dänemark Bildungs-Gesetzgebung und Politik 200 Sozialwohnungen 181
Beratungsteams, mobile 117 Bergbau 61-63 berufsbedingte Verletzung 61-62 berufstätig s. Teilhabe an Beschäftigung Beschäftigung, unterstützte 209-211 Beteiligte, Einbeziehung 143 Bettenblockierer 174 Beurteilungstheorie 156 Bewältigungsstrategie 152, 156 Bewegung 81, 150, 158-159 Beziehungen 143, 151, 155 Bildung berufliche 197-199, 204 postsekundäre 198-199, 202
Darm, neurogener 85 Darmfunktion 83, 96 Daten Gesundheitsbereich 33-34, 34 Standardisierung 36
Datenquellen 20, 33, 247 Dauerkatheter 85 Definition 36-37 medizinische 36
degenerative Erkrankung 27 Dekubitus 29, 82-83, 87, 253 demographische Entwicklung 24 Depression 90, 148, 154-155, 199, 210 Design Gesundheitstechnologie 122, 132 universelles 82, 176-178, 182, 187, 237, 256
Bildungsressourcen 198-199 Blasenkatheter 80, 85 Blasenmanagement 80, 85-86 BokSmart 65 Bombenexplosion 58 Brasilien demographische Entwicklungen von traumatischer QSL 23-24 informelle Pflege 147-148 Kampagnen für eine bessere Zugänglichkeit 177 kleine QSL-Stationen 116
Deutschland öffentliche Gebäude 175 Teilhabe am Sport 158
Dienste Koordination 116 Verfügbarkeit 115
Dienstleister 161-162 Dienstleistungen, Erbringung 114-116, 121-123, 133 Disabled Students Allowance 204 Duschen 93
260
Index
Dysreflexie, autonome 87
E Ehrenamt 147, 149 Einfluss von QSL 4 Eingriff, chirurgischer 84, 86, 89 Einkommen 207 durch Beschäftigung 197, 215, 237
Selbständigkeit 215-216 Stärkung von Gesundheitssystemen 109-117, 123 zugängliche Wohnungen 179-181
Finnland Inzidenz von traumatischer QSL 21 Mortalitätsrisiko 28 Prävalenz von traumatischer 18,20, 18-20 private Verkehrsmittel 184 QSL infolge Selbstmordversuch 23
Einschränkungen der Aktivität 61, 79, 87-88 Einstellungen 143-162, 238 des Umfelds 143
Elternschaft [Mutterschaft] 153-154 Entschädigungsregelung 128 epidemiologische Indikatoren für QSL Ätiologie 16, 22-24 Datenquellen 33, 247-248 Empfehlungen 37-38 Inzidenz 16, 16-17, 19-22, 251-252, 254 Methoden bei systematischen Übersichtsarbeiten 243-245 Prävalenz 16, 16-19, 232, 255 Probleme und Bedenken in Bezug auf Daten 36-37 standardisierte Mortalitätsrate 16, 16, 28 Todesfallraten 16
Flex Housing 181 FLIPPER 182 folathaltige Nahrungsergänzungsmittel 61, 235 formelle Pflege 149-150 Bereitstellung eines Rollstuhls 234 Mortalitätsrisiko 28 Personal 147 Prävalenz von QSL 18-20 sekundäre Gesundheitsprobleme [Sekundärerkrankungen] 17, 151, 215, 254 Selbständigkeit 89, 97, 146, 197, 215-216, 237 Selbsthilfegruppen 158, 161 unerfüllte Bedürfnisse im Bereich unterstützende Technologien 109-111 Verletzungen im Bergbau 62-63 Wohnungen [Wohnverhältnisse, Wohnungsbau, Unterkunft] 174, 178-181, 187-188
Erdbeben 66 erektile Dysfunktion 87 Erschwinglichkeit 127, 132, 188 Ertüchtigung, körperliche 150 Escola Aberta 203 Estland Inzidenz von traumatischer QSL 20 standardisierte Mortalitätsrate 28
Forschung im Bereich QSL 8, 238 Datensammlung 33, 237 Einstellungen, Beziehungen und Anpassung 149 neue Behandlungsmethoden 129-131 Probleme im Bereich Zugänglichkeit 178 Stärkung von Gesundheitssystemen 129-131
European Spinal Cord Injury Federation (ESCIF) 159 Grundsatzerklärung 114
Frankreich Anpassung an QSL 145 Inzidenz von traumatischer QSL 20-21 QSL infolge von Sportverletzungen 23 Selbsthilfegruppen 158 soziale Bewegung der Menschen mit Behinderung 158 Teilhabe an Bildung 200
F Fachleute im Bereich Sozialfürsorge 238 im Gesundheitswesen 238 mit Behinderung 146-147 Einstellungen 145-147
Fahrerqualifizierung, Nachweisregelung 55 Fahrradrikscha 183 Familie Beziehungen 151-153, 233 als Pflegende 147, 248 Schulung und Unterstützung von 122
Fruchtbarkeit 86 Führungsrolle 111-112, 131 Funktionsfähigkeit 83-84, 87, 254 neurologische 78-79, 97
G Gebäude, öffentliche 175-177, 184-188 Gehhilfen 92 Geräte, neurologische Kontrolle 129 Geschlechterunterschiede bei der Inzidenz von traumatischer QSL 21 geschützte Werkstätten 212-213 Geschwindigkeitsbegrenzungen 52
Familienstand 153 Feldsportarten 66 Fidschi, informelle Pflege 148 Finanzierung Bildung 204
261
Querschnittlähmung – Internationale Perspektiven
Geschwisterbeziehungen 153-154 Gesellschaft, QSL als Herausforderung 8 Gesetze über Alkohol am Steuer 55 Gesetzgebung 55, 61, 111-112, 126, 184, 200 Gesundheit mentale 90, 96 reproduktive 86, 110, 236
I ICF Core Sets für QSL 36 Independent Living 7 Indien partnerschaftliche Beziehungen 151 Probleme im Bereich Beschäftigung 208, 21, 219 Einkommen 203 QSL durch Infektion 27 Unterstützung beim Lernen 204
Gesundheitserhaltung 95-97 Gesundheitsinformationen, Standards 34-35 Gesundheitsinformationssysteme 126, 132 Gesundheitsprobleme, sekundäre 29-30, 151, 155, 209, 215, 254 Gesundheitsspielraum 95, 233, 236 engerer 2, 95, 233, 236
Gesundheitstechnologie 122-126, 132 Gesundheitswesen 231-233 Ghana, Probleme im Bereich Einkommen 217 Global Spinal Cord Injury Consumer Network 159 Griechenland Geschlechterunterschiede bei der Inzidenz von traumatischer QSL 21 partnerschaftliche Beziehungen 152
Infektionskrankheit 27, 59 Informationsstandards 34-35 Informationssysteme 126-127, 132 inklusive Schulen 255 integrierte Schulen 255-256 International Standards for Neurological Classification of SCI 7 Internationale Klassifikation der Funktionsfähigkeit, Behinderung und Gesundheit (ICF) 8-9, 36, 254 der Krankheiten (ICD) 35, 37 Klassifizierung Externer Ursachen von Verletzungen (ICECI) 35, 38, 237-238 Organisation für Normung (ISO) 124 QSL Datensets 34-36, 243
Grippe 29, 96, 233 Gruppentherapie, unterstützende 157 Guatemala, unterstützende Technologie 124 Guttmann, Ludwig 7
H Haddon-Matrix 57 Haiti, Veränderung der Einstellung 146 Harnwegsinfektionen 151, 233, 235 Hautpflege 82-83, 92, 160 Heimarbeit 215 Heimunterricht 201 Herzerkrankung 95, 233 Herzkrankheit, ischämische 29, 95 Herz-Kreislauf-System 96 Hilfe 147-148 Hilfsmittel zum Essen und Trinken 93 zur Körperpflege 87
Internetquellen 214, 245-246 Intervention, psychologische 156 Inzidenz von QSL 21 Iran Bewältigungsstrategien 152 Prävalenz von traumatischer QSL 18
Irland Bildung finanzieren 204 Geschlechterunterschiede bei der Inzidenz von traumatischer QSL 21 Inzidenz von traumatischer QSL 20 öffentliche Gebäude 185
Island Inzidenz traumatischer QSL 20 Prävalenz traumatischer QSL 18
Israel Selbstmordversuche mit QSL als Folge 23 Spina bifida Prävention 60
HIV 58 Hochschulbildung 121, 205, 233 Hoffnung 130, 157 auf Höhe der Brustwirbelsäule 6 husten 81 Hypotonie 87 orthostatische 80
Italien, FLIPPER Verkehrsmittel 60
J Japan, Probleme im Bereich Zugänglichkeit 177 Jobs Accommodation Network 214
262
Index
K Kaleidoscope Programm 211 Kanada Einstellungen des Umfeldes 144-145 Inzidenz von nicht-traumatischer QSL 25 von traumatischer QSL 20, 22 Kosten von QSL 32 Prävalenz von QSL 18, 19, 18-19, 61, 232 QSL infolge von Alkohol-/Drogenkonsum 24 von Gewalt 23 Rick Hansen Spinal Cord Injury Registry 33, 35 Selbständigkeit 216 Sozialhilfe 217 Sterblichkeitsrisiko 29 Toolkit für Zugänglichkeit innerhalb der Gemeinde 185 Wohnungen [Wohnverhältnisse, Wohnungsbau, Unterkunft] 178, 181
Lähmung inkomplette 7 komplette 7
Katar, Inzidenz von traumatischer QSL 20, 20-21 Katheter suprapubischer 85 urethraler 85
Lebenserwartung 27-29, 95, 232 Lebensqualität 4 Lebenszufriedenheit 155-156 Lehrer, Einstellungen 206-207 Leone, Sterblichkeitsrisiko 3 Libanon, Sensibilisierung für Behindertenproblematik 206 Libre Acceso 177 Licht-Einschaltpflicht 55 Lifecycle Housing-Programm 179 Lifetime Homes 179 London Accessible Housing Register 181 Lunge, kollabierte 81 Lungenentzündung 29, 81, 95, 97, 233 Lungenkapazität 81 Lungenversagen 81
M Malawi, unterstützende Technologien 114 Malaysia Probleme im Bereich Ausbildung und Zugänglichkeit 203 Beschäftigung 208 Einkommen 217 Teilhabe an Bildung 203
Katheterisierung, intermittierende 85 Kenia Aufklärung der Eltern 154 Einstellungen des Umfelds 144 informelle Pflege 149 soziale Unterstützung 148-149 Teilhabe an Bildung 198 Wohnungen [Wohnverhältnisse, Wohnungsbau, Unterkunft] 203
Kinder, als Pflegende (s. auch QSL, Kinder) 154 Kolumbien Schulung, Probleme bei der Zugänglichkeit 177 Schusswaffengesetze 58
Kommunikation, unterstützende Einstellungen 91, 93 Kommunikationsgeräte 93 Kondomurinal 85 Koordination von Diensten 116 Körperpflege, Hilfsmittel 87 Kosten in direktem Bezug zu QSL 30-31 von QSL 15, 30-32, 127, 211
“Map of Accessible Sofia” 185 Maßnahmen des Gesundheitssektors im Bereich QSL 236-237 Menschenrechte 9-10 Menstruation 86 Messerstichverletzung 58, 235 Mexiko öffentlicher Verkehr [öffentliche Verkehrsmittel] 183 Zugänglichkeitskampagnen 177
Krankenakten, Führen 37 Krankheiten, chronische 95 Kreislaufprobleme 79-80 Kultur der Zugänglichkeit 187 Kurzzeitpflege 149, 161, 254
Mikrofinanzierung 216, 219 Minibusse 175, 183, 255 Mobilität, Geräte zur Unterstützung 91, 123 Modell des Lebensverlaufs 154 Mortalitätsrate 244 standardisierte (SMR) 16, 28
Mortalitätsrisiko 28 f Mosambik öffentlicher Verkehr [öffentliche Verkehrsmittel] 183 unterstützende Technologien 114
Motivation 119, 158 Romania Foundation (MRF) 124
L Lagerungssysteme 92
Motorradfahren 184
263
Querschnittlähmung – Internationale Perspektiven
Motorradhelme 55 Munro, Donald 7 muskuloskelettales System 80-81
N Nachweisregelung für Fahrerqualifizierung 55 Nahrungsergänzungsmittel, folathaltige 61, 235 Namibia, unterstützende Technologien 114 National Resource Centre for Inclusion 205 Nationaleinkommen (Länder mit hohem) [hohes Nationaleinkommen] Berufsausbildung 210-211 Bildungsfinanzierung 204-205 Bildungsrecht und -politik 200, 203 Kosten von QSL 127 Lebenserwartung 29 Mortalitätsrisiko 28 Pflege im persönlichen Umfeld 149 Selbständigkeit 216, 219 sozialer Schutz 216-217 ungedeckte Bedürfnisse hinsichtlich unterstützender Technologie 111 zentralisierte QSL-Register 33 zunehmende Prävalenz von QSL 18-19 (Länder mit mittlerem) [mittleres Nationaleinkommen] Bereitstellung eines Rollstuhls 234 Kosten von QSL 127 Leben mit QSL 3 Personal 145 Prävalenz von QSL 18-19, 232 Probleme im Bereich Beschäftigung 204, 208 Selbsthilfegruppen 158, 161 sozialer Schutz 216-217 Teilhabe an Bildung 198, 200, 203 unerfüllte Bedürfnisse im Bereich unterstützende Technologie 109-111 unterstützende Technologie 111 (Länder mit niedrigem)[niedriges Nationaleinkommen] Kosten von QSL 127 Probleme im Bereich Beschäftigung 204, 208 Teilhabe an Bildung 198, 200, 203 unterstützende Technologie 111, 114, 122-123, 132, 204
Kaleidoscope Programm zur beruflichen Rehabilitation 211 persönlicher Assistent 151 Prävention von Querschnittlähmung beim Rugby 64-65 Projekt “Accessible Christchurch” 186 Selbsthilfegruppen 158
NHV Modell 113 Nicht-Regierungsorganistionen (NGOs) 53, 113-114, 119, 122-123, 146, 149, 158, 205, 239 nicht-traumatische QSL Akutversorgung 84 Ätiologie 25 Definition 254 Inzidenz 25 Kosten 30 Prävalenz 15, 17-18 Prävention 58-59, 232 steigende Inzidenz 17 Untererfassung 37 Ursachen 5
Niederlande Bereitstellung eines Rollstuhls 234 informelle Pflege 147 Inzidenz von traumatischer QSL 20 Lebenszufriedenheit nach einer QSL 155 partnerschaftliche Beziehungen 152 Probleme im Bereich Beschäftigung 213 RegioTaxi KAN 182 soziale Unterstützung 217 Sozialwohnungen [sozialer Wohnungsbau] 174 unerfüllte Bedürfnisse im Bereich unterstützende Technologien 109-111
Nigeria Ausbildung und Unterstützung von pflegenden Personen 122 Kosten von QSL 32, 127 öffentliche Gebäude 175 QSL infolge von Sportverletzungen 23 Sterblichkeitsrisiko 29 Verkehrsunfälle 22
Norwegen Bildungsfinanzierung 204 Inzidenz von traumatischer QSL 22 Prävalenz von traumatischer QSL 18 QSL infolge von Gewalt 23 standardisierte Mortalitätsrate (SMR) 28
Naturkatastrophen 66, 186 Nepal Probleme im Bereich Einkommen 217 QSL infolge von Stürzen 23
Nervenwurzeln 5 Netzwerke, soziale 152, 154, 237 Neuralrohrdefekte 58, 61, 235 neuromuskuloskelettale Komplikationen 80 Neuseeland Entschädigungszahlungen 128
O Observerships 122 öffentlicher Verkehr [öffentliche Verkehrsmittel] 92, 145-146, 173-179, 182-188, 209, 237 Online-Angebote/Online-Ressourcen 121, 206 Online-Kurse 121 Organisation, ehrenamtliche 147, 149
264
Index
Orthese 88 untere Gliedmaßen 91
Ossifikation, heterotope 81 Osteoporose 80-81 Outreach-Modell 117
Sportverletzungen 62-64, 234 Stürze 56-57 traumatische QSL 52-58 Verkehrsunfälle 52, 234 sekundäre 51 tertiäre 51
P Paarberatung 153 pädiatrische QSL familiäre Beziehungen 153 traumatische QSL Inzidenz 22 unterstützende Technologien 120
Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) 243 Primärversorgung 8 unerfüllte Bedürfnisse 110
Pakistan, Darmmanagement 86 Paraplegie 7 gesundheitliche Auswirkungen 78 Kosten 31 Mortalitätsrisiko 28 Prognosen für funktionale Ergebnisse 87
Probleme und Bedenken in Bezug auf Daten 33-34 Projekt “Accessible Christchurch” 186 Prothetiker/Orthetiker 255 psychologische Auswirkungen von QSL (s. auch mentale Gesundheit) 207
Q QSL Anpassung 143, 148, 155-160 Ätiologie 16, 22, 24-25, 36 gesundheitliche Auswirkungen 78-83 historischer Hintergrund 7 auf Höhe der Halswirbelsäule 5 der Lendenwirbelsäule [lumbale Verletzung] 5-6 indirekte Kosten 17 infolge von Alkoholkonsum 21, 242 von Drogenkonsum 24, von Freizeitaktivitäten 232, 62 Ausmaß der Schädigung 5 gesundheitliche Auswirkungen 78-83 Kosten 30-32 Läsionshöhe 7 Mortalitätsrisiko 28 Prävention 51-58 von Gewalt Prävention von Sportverletzungen 4-5, 233 Komplikationen s. Sekundärerkrankungen Kosten in direktem Bezug 30-31 Maßnahmen des Gesundheitssektors 236-237 medizinische Dimension 5 Symptome 5
Paratransit 175, 182-183, 255 Partner 152 Peer-Monitoring/Unterstützung 15, 90, 119, 158, 202, 219 Personal 120-122, 132 personenorientierte Ansätze 118-119 Peru, QSL infolge von Infektionen 27 Pflege formelle 149 informelle 147-148 persönliches Umfeld 149
Pflegeheim 149 Pflegende 147-148 Kinder als 154 Schulung und Unterstützung bei 122, 147, 161 unterstützende Technologie 95
physische Umgebungen s. zugängliche Umwelten Pistolen 58 Polen, öffentliche Gebäude 185 Portugal, Teilhabe an Bildung 203 posttraumatische Belastungsstörung 154-155 Prävalenz von QSL 17, 17-19 Prävention primäre 51 von QSL 51 Arbeitsunfall 61-62 Empfehlungen 67 Gewalt 57-58 Naturkatastrophen 66 nicht-traumatische QSL 58 primäre/sekundäre/tertiäre Prävention 51 QSL infolge von Freizeitaktivitäten 62-64, 234
QSL-Register 21, 33, 35, 37-39, 159, 238 QSL-Stationen/Teams, kleine 25, 30 Quadriplegie [Tetraplegie] 6 Querschnittlähmung (QSL) Definition 36 historische Dimension 7 medizinische Dimension 5
265
Querschnittlähmung – Internationale Perspektiven
R Rapid Transit-Systeme 183 Regierungsmaßnahmen 237-238 RegioTaxi KAN 182 Rehabilitation berufliche 210-212, 218-219 gemeindenahe 113, 117, 149, 179, 237 professionelle Ausbildung 122, 156 unerfüllte Bedürfnisse 109-111
Schule inklusive 255 integrierte 255-256
Reisekette 175, 255 Reiten 66 Rekonstruktion chirurgische 89 operative 89
Schulen, Maßnahmen 145 Schulverwaltungspersonal 198 Schusswaffen 23, 57-58, 235 Schutz, sozialer 216, 219, 238 Schwangerschaft 87 Schweden Brukslinjen Verkehrsprojekt 182 geschlechtsspezifische Unterschiede bei der Inzidenz von traumatischer QSL 21 partnerschaftliche Beziehungen 152 persönliches Assistenzprogramm 150 QSL infolge von Infektionen 27 soziale Netzwerke 154 Sozialwohnungen [sozialer Wohnungsbau] 178, 181
Republik Korea, QSL infolge von Sportverletzungen 23 Ressourcenverteilung 35 Richtlinien, evidenzbasierte 133 Rick Hansen Spinal Cord Injury Registry 33, 35 Robotertechnik 129 Rollstühle Arbeitsplatz 214 Arten von 88 Bedarf an 90 Dienste für Betroffene in Rumänien 125 Dienstleistungserbringung [Erbringung von Dienstleistungen] 114 Nichtgebrauch von und Verzicht auf 123 technologischer Fortschritt 129 unangemessene Bewertung von 116 Zugänglichkeitsstandards 176-177
Schweiz, Entschädigungszahlungen 128 Schwere der Verletzung Ausmaß der Behinderung 5 gesundheitliche Auswirkungen 78, 84 Kosten 30-32 Sterblichkeitsrisiko 28
Sektor, privater 114, 176, 179, 238 Sektoren 238 sekundäre Gesundheitsprobleme 29-30, 155, 205, 209, 254 Definition 254 Probleme im Bereich Beschäftigung 151, 209 Sterblichkeitsrisiko 27, 29, 79 vermeidbare 29
Ruanda, Wohnungen [Wohnverhältnisse, Unterkunft, Wohnungsbau] 181 Rückenmark, Anatomie 6 Rückhaltesystem für Kinder 55 Rugby 62, 64-65 RugbySmart 65 Rumänien, Dienste für Rollstuhlfahrer 124 Rumpforthesen 91
S Safe-Systems-Approach 52-53 Salvador, Schusswaffengesetz 58 Sambia, unterstützende Technologie 110, 114 Schädigung 255-256 scharfe Gegenstände 58 Scheidung 152, 233 Schmerzen 7 muskuloskelettale 82 neuropathische 80
Selbständigkeit 89, 97, 146, 197, 215-216, 237 Selbsthilfegruppen 158, 161 Selbstmanagement 110, 119, 201 Selbstmordversuch 23, 248 Selbstverletzung 23, 57, 232 Selbstversorgung, Vorrichtungen 87 Selbstwertgefühl 155-156 Selbstwirksamkeit 156-157 Sexualfunktion 84-86 Sicherheitsgurte 22, 53, 55 Simbabwe öffentliche Gebäude 175 Probleme im Bereich Beschäftigung 208 Einkommen 217 unterstützende Technologie 110, 114
schrittweise Realisierung 173, 184 Schulbildung s. Teilhabe an Bildung
Sitzsysteme 97 Skifahren 66 Snowboarden 66 Sonderfahrdienste 182, 255
266
Index
Sonderschulen 255 soziale Bewegung von Menschen mit Behinderung 7 Netzwerke 152, 154, 237
Stürze 22-24 Prävention 57
Südafrika formelle Pflege 149 öffentliche Gebäude 175 öffentlicher Verkehr [öffentliche Verkehrsmittel] 183 Prävention von Verletzungen im Bergbau 62-63 beim Rugby 64-65 QSL infolge von Gewalt 23 Teilhabe an Bildung 200, 203
Sozialfürsorge, Fachleute 238 Sozialhilfe 217 Sozialleistungen 217-218 Sozialleistungsfalle 80, 217 Sozialleistungssystem 80 Sozialwohnungen [sozialer Wohnungsbau] 174, 178, 181, 256 Spanien, Inzidenz von nicht-traumatischer QSL 26 von traumatischer QSL 20
Supervision 121-122 System der Gesundheitsberichte (SHA) 36
Spastik/Spasmen 80 Spina bifida Berufsberatung 210 Inzidenz 26, 60, 249, 251 Kosten 31 Prävention 59-61, 251-252 Probleme im Bereich Beschäftigung 205-208 im Familienverband 144, 148, 153-154 Teilhabe an Bildung 197, 199 f Übergang zum Erwachsenenalter 154
T Tansania, Vereinigte Republik öffentlicher Verkehr [öffentliche Verkehrsmittel] 182-183 Teilhabe an Bildung 203
Tastaturdesign 129 Taxi 175, 182-183 Technologie 82, 89-90, 122-126 für häusliche Aktivitäten 91 geeignete 82, 123 unterstützende Akzeptanz 116 Arbeitsplatz 219 Arten von 91-94 Bedarf 90 Bereitstellung von Diensten [Erbringung von Diensten] 109-110, 112, 236 Definition 82 entscheidender Bestandteil der Rehabilitation 236 Forschung und Innovation 129-131 Funktionsfähigkeit 91-93 Kostenfaktoren 114, 126-128 mittleres Nationaleinkommen 122, 207 niedriges Nationaleinkommen 123-124, 127, 132 Personal 120 Produktionsund Vertriebsmodelle 124 Schulen 187 unerfüllte [unbefriedigte] Bedürfnisse 109-110 Verleih und Vermietungsprogramm 128 Ziele 87
Spinal Cord Injuries Australia (SCIA) 159 Essentials“ 119 Injury Trust 158
Spiritualität 151 Sprünge 63-64, 64 Sri Lanka Peer-Support (gegenseitige Unterstützung) 119, 160 Rehabilitation und Anpassung an QSL 156 Wohnungen [Wohnverhältnisse, Unterkunft, Wohnungsbau] 179-180
Stammzellentherapie 129-130 Standards zu Gesundheitsinformationen 34-35 Stärkung von Gesundheitssystemen 109-133 Empfehlungen 131-133 Erbringung von Dienstleistungen 112-115 Finanzierung 109-117, 123 Forschung 133 Führungsrolle und Steuerung 111-112, 131 Gesundheitstechnologien 122-126, 132 Personal 120 QSL als Herausforderung 8
Teilhabe an Beschäftigung 207-217 Berufsausbildung 209-210 Empfehlungen 218-219 falsche Vorstellungen überwinden 213-214 Gesetzgebung 200 Selbständigkeit 215-216 Umweltbarrieren 173-183 unterstützende Beschäftigung 209-210 Vorkehrungen 214-215
Steuerung 111-112, 131 Stoke Mendeville Hospital 7 Straßenbahn 182 Straßenplanung 52 Strategien 111-112
267
Querschnittlähmung – Internationale Perspektiven
an Bildung 161, 174, 183, 198-200 Empfehlungen 218 Finanzierung 204 Gesetzgebung und Politik 200 Rückkehr in die Schule 205, 218-219 Schularten 255-256 soziale Unterstützung 205 Übergang nach der Schulzeit 202-203 Umweltbarrieren 173-174, 183, 234 Veränderung der Einstellung an sportlichen Aktivitäten 7
Teilhabepaket 218 Telemedizin 117, 121 Telerehabilitation 117, 121 Tetraplegie 6 gesundheitliche Auswirkungen 79 Kosten 31-33 Prognosen für funktionale Ergebnisse 87-88 Sterblichkeitsrisiko 28
Umfrage, nationale 34 Umgang mit Behinderten 7 Umweltanpassungen 82 umweltbezogener Faktor (s. auch Umwelt, zugängliche) 234, 253, 256 Umweltkontrollsysteme 90-91 unerfüllte Bedürfnisse 109-111 UN-Konvention über die Rechte von Menschen mit Behinderungen (BRK) 4, 15, 51, 77, 111, 143, 173, 197, 257 Untererfassung von QSL 37 Unterrichtsassistent 204, 207 Unterschiede in der Sexualität nicht-traumatische QSL 21 Rolle der pflegenden Person 152-153 traumatische QSL 20, 22 zwischen den Geschlechtern nicht-traumatische QSL 27 Rolle des Pflegenden 153 traumatische QSL 21-22, 24
Thailand, öffentliche Gebäude 174 Tiefseetauchen 66 Tod s. Mortalitätsrisiko Todesfallraten 16 Toilettengang, Vorrichtungen 93 Tracheotomie 81, 93 Transferhilfen 92 traumatische QSL Akutversorgung 83-84 Ätiologie 22-23 Definition 244, 255 demographische Entwicklungen 23 Erstversorgung 83-84 Inzidenz 11, 16, 20-22 Kosten 17, 30-32 Prävalenz 16, 16-17, 255 Prävention 51 Ursachen 5
Unterstützung 147-151, 160-162 soziale 148, 161, 205
Urogenitalsystem 80 urologische Komplikationen 29 USA Bildung 204 demographische Entwicklungen im Bereich traumatische QSL 24 Finanzierung 127 Hochschulbildung 199 Inzidenz von traumatischer QSL 21-22 Kosten von QSL 31-32 Maßnahmen zur Unterstützung der Familie 119 öffentliche Gebäude 175, 184 QSL Assistive Technology Act (1998) kursiv 126 infolge von Alkohol/Drogenkonsum 24 von Gewalt 23 von Sportverletzungen 23 Rehabilitation 111 Sterblichkeitsrisiko 28-29 Teilhabe an sportlichen Aktivitäten 150, 158 Wohnraumfinanzierung 179-180 Zentralregister zu QSL 33, 34, 38 Zugang zu Gesundheitsdienstleistungen 100 Zugänglichkeit 115 Zugänglichkeitsstandards 177
Tuberkulose 27, 58, 232 Tumor 27 neoplastischer 27
Türkei öffentliche Gebäude 175 QSL infolge von Gewalt 23
U U-Bahn 182 Übergangsprogramme 210, 212 Uganda Finanzierung von Bildung 204-205 gemeindenahe Rehabilitation 117 Zugänglichkeitsstandards 127, 177
V vaskuläre Erkrankungen 37 Venenthrombose, tiefe 79
Umfeld, persönliches, Pflege 149
268
Index
Verabredungen 152 Verbraucherorganisationen und Netzwerke 158-159 Vereinigte Arabische Emirate, öffentliche Gebäude 175 Republik Tansania öffentlicher Verkehr [öffentliche Verkehrsmittel] 182-183 Teilhabe an Bildung 203
Vietnam 117 virtuelle Umgebungen 129 Visitability 179 Vorkehrung 201, 204-207 angemessene 119-120, 184, 204 Schulen 202-204
Vereinigtes Königreich 26 Antidiskriminierungsgesetz 200 demographische Entwicklungen im Bereich traumatische QSL 24 partnerschaftliche Beziehungen 152, 203 Prävention von Verletzungen von Waffen 58 Selbständigkeit 216 Selbsthilfegruppen 158 Taxitransport 183 Teilhabe an Bildung 199, 204 Wohnungen [Wohnverhältnisse, Unterkunft, Wohnungsbau] 174, 178-179, 181, 184
W „Warsaw without Barriers“ 185 Weiterentwicklung, fortwährende berufliche 121 Weltbericht Behinderung (WHO) kursiv 109-110, 147 Wirbelsäulenerkrankung 59 Wissenslücken 178 Wohlbefinden 96 Wohnungen [Wohnverhältnisse, Wohnungsbau, Unterkunft] 174, 178-181, 187-188 Wohnungsregister 181
Verfügbarkeit von Diensten 115 Verhaltenstherapie, kognitive 156-157 Verkehr, öffentlicher [öffentliche Verkehrsmittel] 92, 145-146, 173-177, 182-184, 188, 209, 237 verkehrsberuhigende Maßnahmen 54 Verkehrsmittel, private 184 Verkehrsunfall Prävention
Z Zugängliche Umgebungen 173, 257 Empfehlungen 187-188 öffentliche Gebäude 175-177, 184-188 Personenbeförderung 173-176 Teilhabe an Beschäftigung 198 Teilhabe an Bildung 183 Wohnverhältnisse 174
Verletzung berufsbedingte 61-62 durch Freizeitaktivitäten 62-64, 234
Zugänglichkeit (s. auch zugängliche Umwelten) 145, 149, 173-179, 185-187, 214-215 Gesundheitsversorgungsdienste 85, 92, 97, 115, 239 übergreifende Maßnahmen 176-178, 187 Überprüfung 177, 237
Versicherungsdaten 247 Versicherungsvertrag 128, 132 Versorgung vor der Einlieferung ins Krankenhaus [Erstversorgung] 30, 35, 77, 112, 146 medizinische s. Bedürfnisse bei der Gesundheitsversorgung postakute medizinische 84-85, 236
Zugänglichkeitsstandard 176, 257 Zwerchfellschrittmacher 81
269
την Κάκωση
Νωτιαίου Μυελού Spinal Cord Section Hellenic Society of Physical & Rehabilitation Medicine
Διεθνείς προοπτικές για
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Spinal Cord Section Hellenic Society of Physical & Rehabilitation Medicine
Εκδόθηκε από τον Παγκόσμιο Οργανισμό Υγείας το 2013 υπό τον τίτλο "International Perspectives on Spinal Cord Injury" © World Health Organization 2013
Ο Παγκόσμιος Οργανισμός Υγείας έχει παραχωρήσει τα δικαιώματα μετάφρασης και έκδοσης για μία ελληνική έκδοση στην Ελληνική Εταιρεία Φυσικής Ιατρικής & Αποκατάστασης, Ελληνικό Τμήμα Μελέτης & Αποκατάστασης Βλαβών Νωτιαίου Μυελού, η οποία είναι αποκλειστικά υπεύθυνη για την ποιότητα και την πιστότητα της Ελληνικής γλώσσας. Σε περίπτωση ασυμφωνίας μεταξύ της αγγλικής και της ελληνικής απόδοσης, το πρωτότυπο αγγλικό κείμενο είναι δεσμευτικό και παραμένει η αυθεντική έκδοση.
"Διεθνείς Προοπτικές για την Κάκωση Νωτιαίου Μυελού" © Ελληνική Εταιρεία Φυσικής Ιατρικής & Αποκατάστασης, Ελληνικό Τμήμα Μελέτης & Αποκατάστασης Βλαβών Νωτιαίου Μυελού 2015 Την Ελληνική μετάφραση επιμελήθηκαν μέλη του Τμήματος Μελέτης & Αποκατάστασης Βλαβών Νωτιαίου Μυελού της Ελληνικής Εταιρείας Φυσικής Ιατρικής & Αποκατάστασης: Κωνσταντίνος Αθανασόπουλος, Αγγελική Γαλάτα, Θεοφάνης Γρέντζελος, Ευγένιος Διαμαντίδης, Ιωάννης Διονυσιώτης, Ηλίας Καραγιαννάκης, Αντώνης Κονταξάκης, Αικατερίνη Κοτρώνη, Ευθύμιος Κουλούλας, Αθανάσιος Κυριακίδης, Ηλίας Λυμπεριάδης, Ευαγγελία Μαραγκουδάκη, Γεώργιος Μέλλος, Ελένη Μουμτζή, Νικόλαος Μπαρότσης, Γεώργιος Μπίκος, Κωνσταντίνος Νάβαλης, Αθηνά-Μαρία Νέλλα, Χριστίνα-Αναστασία Ραπίδη, Νικόλαος Ρούσσος, Ελένη Σολιδάκη, Κυριακή Στάθη, Νικόλαος Σταμούλης, Αγγελική Σταυριανού, Μαρία Τακβοριάν, Ιωάννης-Αλέξανδρος Τζάνος, Ευστρατία Χαλίδα. Φιλολογική επιμέλεια: Άννα Απέργη
Σχετικά με την μεταφρασμένη έκδοση μπορείτε να απευθύνεστε: ΕΕΦΙΑπ (info@eefiap.gr) και Χριστίνα-Αναστασία Ραπίδη (rapidicha@hotmail.com)
ISBN 978 618 82190 0 7
Περιεχόμενα Πρόλογος Ευχαριστίες Συντελεστές 1. Κατανοώντας την κάκωση νωτιαίου μυελού Στόχος και σκοπός αυτής της αναφοράς Τι είναι η κάκωση του νωτιαίου μυελού Η ιατρική διάσταση Η ιστορική διάσταση της κάκωσης του νωτιαίου μυελού Η κάκωση του νωτιαίου μυελού ως πρόκληση για τα συστήματα υγείας και για την κοινωνία Εργαλεία για την κατανόηση της εμπειρίας της κάκωσης του νωτιαίου μυελού Ανασκόπηση 2. Μια σφαιρική εικόνα της κάκωσης νωτιαίου μυελού Τι γνωρίζουμε για την κάκωση του νωτιαίου μυελού Επιπολασμός της κάκωσης του νωτιαίου μυελού Συχνότητα της κάκωσης του νωτιαίου μυελού Τραυματική κάκωση του νωτιαίου μυελού Μη τραυματική κάκωση του νωτιαίου μυελού Θνησιμότητα και προσδόκιμο επιβιώσης Κόστος της κάκωσης του νωτιαίου μυελού Στοιχεία και δεδομένα για την κάκωση του νωτιαίου μυελού Πηγές δεδομένων Πρότυπα πληροφοριών Προβληματισμοί και ανησυχίες για τα δεδομένα Ορισμοί και προτυποποίηση δεδομένων Ανεπάρκεια αναφορών Άλλα θέματα Συμπεράσματα και συστάσεις 3. Πρόληψη της κάκωσης νωτιαίου μυελού Αιτίες τραυματικής κάκωσης νωτιαίου μυελού Τροχαία ατυχήματα Πτώσεις Βία Αιτίες τραυματικής κάκωσης νωτιαίου μυελού vii ix xi 1 4 5 5 6 7 7 9 11 14 14 17 18 22 23 27 29 30 32 32 33 33 33 34 45 47 48 51 51 53 iii
Δραστηριότητες, χώροι και σύνθήκες που σχετίζονται με την κάκωση νωτιαίου μυελού Εργατικά ατυχήματα Τραυματισμοί κατά τον αθλητισμό και την αναψυχή Φυσικές καταστροφές Συμπεράσματα και συστάσεις 4. Υγειονομική περίθαλψη και ανάγκες αποκατάστασης Κατανοώντας ττην επίδραση στην υγεία της κάκωσης νωτιαίου μυελού Πιθανές επιπτώσεις Ανάγκες υγειονομικής περίθαλψης Προνοσοκομειακή αντιμετώπιση στην οξεία φάση Υγειονομική περίθαλψη και αποκατάσταση μετά την οξεία φάση Βοηθητική τεχνολογία Διατήρηση της υγείας Συμπεράσματα και συστάσεις 5. Ενίσχυση συστημάτων υγείας Ανεκπλήρωτες ανάγκες Υγειονομική περίθαλψη Αποκατάσταση Ενίσχυση συστημάτων υγείας Ηγεσία και διακυβέρνηση Παροχή υπηρεσιών Ανθρώπινοι πόροι Τεχνολογίες υγείας Σύστημα πληροφοριών υγείας Χρηματοδότηση και προσιτό κόστος Έρευνα Συμπεράσματα και συστάσεις 6. Συμπεριφορές, σχέσεις και προσαρμογή Συμπεριφορές Στάση της ευρύτερης κοινωνίας Στάση των επαγγελματιών υγείας Βοήθεια και υποστήριξη Μη επίσημη φροντίδα Επίσημη φροντίδα Προσωπικοί βοηθοί
54 54 57 60 61 69 72 73 76 76 77 82 86 88 97 99 99 100 101 101 103 108 111 113 113 116 118 129 132 132 133 134 134 136 136
iv
Οικογενειακές σχέσεις Σύντροφοι Γονεϊκές και αδελφικές σχέσεις Προσαρμογή στην κάκωση του νωτιαίου μυελού Συμπεράσματα και συστάσεις 7. Κάκωση νωτιαίου μυελού και περιβάλλον με δυνατότητα πρόσβασης Φραγμοί για άτομα με κάκωση νωτιαίου μυελού Στέγαση Μεταφορικά μέσα Δημόσια κτίρια Αντιμετωπίζοντας τα εμπόδια Γενικά μέτρα Στέγαση Μεταφορικά μέσα Δημόσια κτίρια Συμπεράσματα και συστάσεις 8. Εκπαίδευση και εργασία Κάκωση νωτιαίου μυελού και συμμετοχή στην εκπαίδευση Αντιμετωπίζοντας φραγμούς στην εκπαίδευση Νομοθεσία και πολιτικές Υποστήριξη παιδιών με δισχιδή ράχη Επιστροφή στο σχολείο μετά τον τραυματισμό Μετάβαση στο σχολείο Μειώνοντας τους φυσικούς φραγμούς Εύλογες προσαρμογές Χρηματοδοτώντας την εκπαίδευση και τις προσαρμογές Κοινωνική υποστήριξη Αντιμετώπιση των φραγμών στη συμπεριφορά Κάκωση νωτιαίου μυελού και συμμετοχή στην εργασία Αντιμετώπιση των εμποδίων στην εργασία Επαγγελματική κατάρτιση και υποστηριζόμενη εργασία Ξεπερνώντας τις παρανοήσεις σχετικά με την κάκωση του νωτιαίου μυελού Εξασφάλιση προσαρμογών στον εργασιακό χώρο Αυτόαπασχόληση Κοινωνική προστασία Συμπεράσματα και συστάσεις
138 138 140 141 146 157 159 160 160 161 162 162 163 166 169 179 182 183 183 184 184 185 186 186 187 187 188 189 190 191 194 195 196 197 199
v
9. Ο δρόμος προς τα εμπρός: συστάσεις Σημεία κλειδιά 1. Η κάκωση νωτιαίου μυελού αποτελεί σημαντικό θέμα δημόσιας υγείας 2. Το προσωπικό και κοινωνικό αντίκτυπο της κάκωσης νωτιαίου μυελού είναι σημαντικό 3. Εμπόδια σε υπηρεσίες και στο περιβάλλον περιορίζουν τη συμμετοχή και υπονομεύουν την ποιότητα ζωής 4. Η κάκωση νωτιαίου μυελού προλαμβάνεται 5. Η επιβίωση είναι δυνατή μετά από κάκωση νωτιαίου μυελού 6. Η κάκωση νωτιαίου μυελού δεν πρέπει να αποτελεί εμπόδιο για την καλή υγεία και την κοινωνική συμμετοχή Συστάσεις 1. Βελτίωση της ανταπόκρισης του τομέα υγείας στην κάκωση νωτιαίου μυελού 2. Ενίσχυση των ατόμων με κάκωση νωτιαίου μυελού και των οικογενειών τους 3. Αντιμετώπιση των αρνητικών συμπεριφορών απέναντι σε άτομα με κάκωση νωτιαίου μυελού 4. Εξασφάλιση προσβασιμότητας σε κτίρια, μεταφορικά μέσα και πληροφορίες 5. Υποστήριξη εργασίας και αυτοαπασχόλησης 6. Προαγωγή κατάλληλης έρευνας και συλλογής δεδομένων Επόμενα βήματα Συμπεράσματα Τεχνικό παράρτημα A Τεχνικό παράρτημα Β Τεχνικό παράρτημα Γ Τεχνικό παράρτημα Δ Γλωσσάρι Ευρετήριο
209 211 211 213 213 214 214 215 216 216 216 216 216 216 216 217 219 221 225 227 229 231 235
vi
Πρόλογος
Τo διεθνές σύμβολο της αναπηρίας είναι η αναπηρική καρέκλα και το στερεότυπο ενός ατόμου με αναπηρία είναι ένας νεαρός άνδρας με παραπληγία. Αν και αυτές οι εικόνες είναι πολύ οικείες, παράλληλα γνωρίζουμε ότι αυτό δεν αποτελεί μια ακριβή εικόνα της πολυμορφίας της αναπηρίας. Ενώ το 15% του πληθυσμού συνοδεύεται από κάποια αναπηρία, λιγότεροι από το 0,1% του πληθυσμού έχουν κάκωση νωτιαίου μυελού (ΚΝΜ). Ωστόσο, η βλάβη του νωτιαίου μυελού είναι ιδιαίτερα καταστροφική, για δύο λόγους. Πρώτον, συχνά είναι μια αιφνίδια κατάσταση που συμβαίνει εν αιθρία. Ένας οδηγός είναι κουρασμένος και μεθυσμένος αργά το βράδυ, παρεκκλίνει από την πορεία του, με αποτέλεσμα την συντριβή και ανατροπή του οχήματος με συνακόλουθη τετραπληγία. Μία έφηβη βουτάει σε μια πισίνα, με αποτέλεσμα να σπάσει το λαιμό της. Ένας εργάτης πέφτει από μία σκαλωσιά, και γίνεται παραπληγικός. Κατά τη διάρκεια ενός σεισμού κάποιος τραυματίζεται στην μέση από την πτώση ενός τοίχου. Μία μεσήλικη γυναίκα παραλύει εξ αιτίας πίεσης του νωτιαίου μυελού από έναν όγκο. Σε όλα αυτά τα παραδείγματα, κάποιο άτομο στο άνθος της ηλικίας του, καθίσταται ανάπηρο σε μια στιγμή. Κανείς από εμάς δεν είναι απόλυτα ασφαλής από ένα τέτοιο κίνδυνο. Δεύτερον, οι συνέπειες της ΚΝΜ είναι συνήθως είτε πρόωρη θνησιμότητα ή στην καλύτερη περίπτωση κοινωνικός αποκλεισμός. Τα συστήματα για την αντιμετώπιση τραύματος είναι συχνά ανεπαρκή. Για πολλούς, η πρόσβαση σε υψηλής ποιότητας αποκατάσταση και συσκευές υποστηρικτικής τεχνολογίας είναι μη διαθέσιμη. Η διαρκής υγειονομική περίθαλψη απουσιάζει, με επακόλουθο ένα άτομο με κάκωση του νωτιαίου μυελού να είναι πιθανό να πεθάνει μέσα σε λίγα χρόνια από ουρολοιμώξεις ή κατακλίσεις . Ακόμα και όταν τα άτομα είναι αρκετά τυχερά ώστε να λάβουν την περίθαλψη και την αποκατάσταση που χρειάζονται, είναι πολύ πιθανό να στερηθούν την πρόσβαση στην εκπαίδευση και στην απασχόληση που θα μπορούσε να τους δώσει τη δυνατότητα να επανακτήσουν την ανεξαρτησία τους και να συνεισφέρουν στις οικογένειές τους και στην κοινωνία. Καμία από αυτές τις καταστροφικές συνέπειες δεν είναι απαραίτητη. Το μήνυμα αυτής της αναφοράς είναι ότι η κάκωση του νωτιαίου μυελού μπορεί να προληφθεί, οι ασθενείς με ΚΝΜ μπορεί να επιβιώσουν και παρά την ΚΝΜ μπορεί να διασφαλιστεί μια καλή ποιότητα ζωής και η πλήρη συμμετοχή στην κοινωνία. Η παρούσα αναφορά περιέχει την καλύτερη διαθέσιμη επιστημονική μαρτυρία σχετικά με τις στρατηγικές για τη μείωση της επίπτωσης της ΚΝΜ, ιδιαίτερα από τραυματικές αιτίες. Στην αναφορά εξετάζεται ο τρόπος που τα συστήματα υγείας μπορεί να ανταποκριθούν αποτελεσματικά σε ανθρώπους που έχουν τραυματιστεί. Τέλος, εξετάζονται ο τρόπος προσωπικής προσαρμογής και οι σχέσεις του ατόμου με ΚΝΜ που θα πρέπει να υποστηριχθούν, το πως τα εμπόδια στο περιβάλλον μπορεί να εξαλειφθούν, και το πώς τα άτομα με κάκωση νωτιαίου μυελού μπορούν να αποκτήσουν πρόσβαση σε σχολεία, πανεπιστήμια και στους χώρους εργασίας. Μπορούμε να μετατρέψουμε την κάκωση του νωτιαίου μυελού από απειλή σε ευκαιρία. Το γεγονός vii
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
αυτό έχει δύο διαστάσεις. Πρώτον, η κάκωση νωτιαίου μυελού αποτελεί δοκιμασία σχεδόν για κάθε πτυχή του συστήματος υγείας. Έτσι, χτίζοντας τα συστήματα υγείας που αντιδρούν αποτελεσματικά στην πρόκληση της βλάβης του νωτιαίου μυελού, σημαίνει ότι θα μπορούν να ανταποκριθούν καλύτερα σε πολλούς άλλους τύπους ασθενειών και τραυματισμών. Δεύτερον, ένας κόσμος που είναι φιλόξενος για ανθρώπους με κάκωση νωτιαίου μυελού, αναπόφευκτα θα δείχνει μεγαλύτερη κατανόηση καθώς και για την αναπηρία γενικά. Βελτίωση της προσβασιμότητας και μεγαλύτερη διαθεσιμότητα υποστηρικτικών συσκευών, θα βοηθήσει εκατομμύρια ατόμων με αναπηρία και ηλικιωμένων ανθρώπων ανά τον κόσμο. Και τέλος, η έννοια "ευκαιρία" φυσικά σηματοδοτεί καλύτερη ποιότητα ζωής αλλά και παραγωγική συμβολή την οποία τα άτομα με ΚΝΜ δικαίως επιδιώκουν, και την οποία μπορούμε να τους βοηθήσουμε να επιτύχουν. Αν μη τι άλλο έχουμε την πολιτική βούληση αλλά και την οργανωτική δέσμευση για να το πετύχουμε. Όπως προγενέστερα με την παγκόσμια έκθεση σχετικά με την αναπηρία (World report on disability), έτσι και τώρα με τις διεθνείς προοπτικές για την κάκωση Νωτιαίου Μυελού (International Perspectives on Spinal Cord Injury), η αναφορά αυτή έχει τη δυνατότητα να αλλάξει τη ζωή και να ανοίξει πόρτες. Καλώ τους φορείς χάραξης πολιτικής στον κόσμο να δώσουν προσοχή στα ευρήματα της. Dr Margaret Chan Γενική Διευθύντρια
viii
Ευχαριστίες
Ο Παγκόσμιος Οργανισμός Υγείας (ΠΟΥ) και Διεθνής Εταιρεία Νωτιαίου Μυελού (International Spinal Cord Society, ISCoS) θα ήθελαν να ευχαριστήσουν τους περισσότερους από 200 συνεργάτες (εκδότες, περιφερικούς συμβούλους, επιστημονικοί κριτές) της παρούσας έκθεσης από 30 χώρες από όλο το κόσμο. Ευχαριστίες θα πρέπει να αποδοθούν επίσης και στους συμβούλους αυτής της αναφοράς, το προσωπικό του ΠΟΥ, της ISCoS και του Ελβετικού ερευνητικού ινστιτούτου παραπληγικών (SPF) για την υποστήριξη και την καθοδήγηση τους. Χωρίς την αφοσίωση και την εμπειρία τους, η αναφορά αυτή δεν θα ήταν εφικτή. Η αναφορά ευεργετήθηκε επίσης από τη συμβολή πολλών άλλων ανθρώπων : ιδιαίτερα του David Bramley και Philip Jenkins, οι οποίοι επιμελήθηκαν το τελικό κείμενο της αναφοράς και της Angela Burton, η οποία ανέπτυξε το εναλλακτικό κείμενο που χρησιμοποιείται από οθόνες που απεικονίζουν εικόνες προσβάσιμες για τα άτομα με προβλήματα όρασης. Eυχαριστίες θα πρέπει να δωθούν επίσης στις Νatalie Jessup, Sue Lukersmith και Margie Peden για την τεχνική υποστήριξη στην ανάπτυξη της αναφοράς. Σχετικά με την ανάλυση και ερμηνεία των δεδομένων, ευχαριστίες θα πρέπει να δωθούν στον Martin Brinkhof, Somnath Chatterji και τον Colin Mathers, ενώ και για τη μετάφραση μελετών από μη αγγλική γλώσσα στην Nicole Andres, Carolina Ballert, Pavel Ptyushkin και στον Hua Wen Cong. Η αναφορά ευεργετήθηκε από το έργο του James Rainbird στην διορθωση τυπογραφικών λαθών, την Cristine Boylan για την δημιουργία ευρετηρίου, και την Susan Hobbs και Adele Jackson για τον γραφικό σχεδιασμό. Τέλος, ευχαριστούμε τη Rachel McLeod-Mackenzie για τη διοικητική υποστήριξη και την παραγωγή της αναφοράς σε προσβάσιμες μορφές, με την υποστήριξη στο έργο αυτό της Melanie Lauckner. Ο ΠΟΥ και η ISCoS θα ήθελαν ιδιαίτερα να ευχαριστήσουν την SPF για την υποστήριξη της στο συντονισμό της ανάπτυξη αυτής της αναφοράς και τον Ελβετικό Σύλλογο Παραπληγικών (SPV), τον SPF και το Ίδρυμα Παραπληγικών Ελβετίας (SPS) για την οικονομική υποστήριξή τους στην ανάπτυξη, τη μετάφραση και τη δημοσίευση αυτής της έκθεσης.
Σχεδιασμός εξώφυλλου από τον Brian Kellett Το 2003, ο Brian Kellett υπέστη Θ4 πλήρη παραπληγία μετά από ατύχημα με ποδηλασία βουνου. Mέσω των τεχνών αποδέχτηκε και προσαρμόστηκε στον τραυματισμό του. Ως αναπληρωτής εκπαιδευτής στο κολέγιο του, και μέσα από την δουλειά του στην σχεδίαση, νιώθει ευγνώμων που η αναπηρία του, του έδωσε μια μοναδική δυνατότητα έκφρασης για να μοιραστεί με άλλους. Εργάζεται ως ανεξάρτητος φωτογράφος και σχεδιαστής και συνεχίζει επίσης τις ακαδημαϊκές του σπουδές στο Πανεπιστήμιο του Οχάιο με διδακτορικό πάνω στην εκπαίδευση των Τεχνών. Στόχος είναι να δημιουργήσει έναν μη κερδοσκοπικό οργανισμό, για εκπαίδευση στην θεραπευτική φωτογράφηση ηλικιωμένων ατόμων με αναπηρία.
ix
x
Συντελεστές
Συντακτική επιτροπή Jerome Bickenbach, Cathy Bodine, Douglas Brown, Anthony Burns, Robert Campbell, Diana Cardenas, Susan Charlifue, Yuying Chen, David Gray, Leonard Li, Alana Officer, Marcel Post, Tom Shakespeare, Anne Sinnott, Per von Groote, Xianghu Xiong.
Εκτελεστικοί συντάκτες Jerome Bickenbach, Alana Officer, Tom Shakespeare, Per von Groote.
Τεχνικοί συντάκτες David Bramley, Philip Jenkins.
Συμβουλευτική επιτροπή Frank Abel, Michael Baumberger, Pietro Barbieri, Fin Biering-Sørensen, Anne Carswell, Fred Cowell, Joel DeLisa, Wagih El Masri(y), Stella Engel, Edelle Field-Fote, Jan Geertzen, Anne Hawker, Joan Headley, Jane Horsewell, Daniel Joggi, Apichana Kovindha, Etienne Krug, Gerold Stucki, Maluta Tshivhase, Isabelle Urseau, Jean-Jacques Wyndaele.
Συνεργάτες σε μεμονωμένα κεφάλαια Κεφάλαιο 1: Κατανοώντας την κάκωση του νωτιαίου μυελού Συνεργάτες: Jerome Bickenbach, Fin Biering-Sørensen, Joanna Knott, Tom Shakespeare, Gerold Stucki, George "arion, Joy Wee. Πλαίσιο: Jerome Bickenbach (1.1). Κεφάλαιο 2: Μια παγκόσμια εικόνα της κάκωσης του νωτιαίου μυελού Συνεργάτες: Jerome Bickenbach, Inga Boldt, Martin Brinkhof, Jonviea Chamberlain, Raymond Cripps, Michael Fitzharris, Bonne Lee, Ruth Marshall, Sonja Meier, Michal Neukamp, Peter New, Richard Nicol, Alana Officer, Brittany Perez, Per von Groote, Peter Wing. Πλαίσια: Martin Brinkhof, Jonviea Chamberlain, Sonja Meier (2.1), Jerome Bickenbach (2.2), Per von Groote (2.3). Κεφάλαιο 3: Πρόληψη της κάκωσης του νωτιαίου μυελού Συνεργάτες: Douglas Brown, Robert Campbell, George Coetzee, Michael Fitzharris, Fazlul Hoque, Shinsuke Katoh, Olive Kobusingye, Jianan Li, Ruth Marshall, Chris Mikton, Peter New, Alana Officer, Avi Ohry, Ari Seirlis, Per vonGroote, Dajue Wang, Eric Weerts, Joy Wee, Gabi Zeilig. Πλαίσια: Michael Fitzharris (3.1), Fazlul Hoque (3.2), Martin Brinkhof, Jonviea Chamberlain, Sonja Meier (3.3), George Coetzee, Alana O!cer (3.4), Richard Nicol (3.5), Balraj Singhal, Rick Acland, David Walton, Wayne Viljoen, Clint Readhead (3.6). xi
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Κεφάλαιο 4: Περίθαλψη και ανάγκες αποκατάστασης Συνεργάτες: Cathy Bodine, Brian Burne, Anthony Burns, Diana Cardenas, Catharine Craven, Lisa Harvey, Graham Inglis, Mark Jensen, Natalie Jessup, Paul Kennedy, Andrei Krassioukov, Richard Levi, Jianjun Li, Sue Lukersmith, Ruth Marshall, James Middleton, Carrie Morris, Peter New, Alana Officer, Govert Snoek, Xianghu Xiong. Πλαίσιο: Natalie Jessup (4.1). Κεφάλαιο 5: Ενδυνάμωση συστημάτων υγείας Συνεργάτες: Cathy Bodine, Yuying Chen, Harvinder Chhabra, WilliamDonovan, Julia D’Andrea Greve, Natalie Jessup, Carlotte Kiekens, Suzy Kim, JiriKriz, Jianan Li, Leonard Li, Sue Lukersmith, Ruth Marshall, Alana Officer, SheilaPurves, Haiyan Qu, Lawrence Vogel, Per von Groote, William Waring, Jacqueline Webel, Eric Weerts. Πλαίσια: James Gosney, Xia Zhang (5.1), Ruth Marshall (5.2), Anca Beudean (5.3), James Guest (5.4). Κεφάλαιο 6: Συμπεριφορές, σχέσεις και προσαρμογή Συνεργάτες: Caroline Anderson, Susan Charlifue, Jessica Dashner, Stanley Ducharme, Martin Forchheimer, David Gray, Richard Holmes, Jane Horsewell, Margareta Kreuter, Mary-Jane Mulcahey, Richard Nicol, Joanne Nunnerley, Marcel Post, Shivjeet Raghaw, Tom Shakespeare, Cyril Siriwardane, Tomasz Tasiemski, Lawrence Vogel. Πλαίσια: Carwyn Hill (6.1), Jane Horsewell, Per von Groote (6.2), Cyril Siriwardane (6.3). Κεφάλαιο 7: Κάκωση νωτιαίου μυελού και ευνοϊκά περιβάλλοντα Συνεργάτες: Jerome Bickenbach, Meghan Gottlieb, David Gray, Sue Lukersmith, Jan Reinhardt, Tom Shakespeare, Anne Sinnott, Susan Stark, Per von Groote. Πλαίσια: Samantha Whybrow (7.1), Jerome Bickenbach (7.2). Κεφάλαιο 8: Εκπαίδευση και εργασία Συνεργάτες: Caroline Anderson, Elena Ballantyne, Jerome Bickenbach, Kathryn Boschen, Normand Boucher, David Gray, Erin Kelly, Sara Klaas, Lindsey Miller, Kerri Morgan, Carrie Morris, Marcel Post, Tom Shakespeare, Lawrence Vogel, Per von Groote, Kathy Zebracki. Πλαίσια: Jerome Bickenbach (8.1), Marcel Post (8.2), Jerome Bickenbach (8.3). Κεφάλαιο 9: Το μέλλον: προτάσεις Συνεργάτες: Alana O!cer, Tom Shakespeare, Per von Groote. Τεχνικά παραρτήματα Συνεργάτες: Inga Boldt, Martin Brinkhof, Jonviea Chamberlain, Sonja Meier, Michal Neukamp, Per von Groote. Συνεργάτες αφήγησης Η αναφορά περιλαμβάνει προσωπικές αφηγήσεις εμπειριών ατόμων με αναπηρίες. Θέλουμε να ευχαριστήσουμε τους: Mónica Agotegaray, David Gray, Julia D’Andrea Greve, Maher Saad Al Jadid, Norah Keitany, Apichana Kovindha, Sue Lukersmith, Ruth Marshall, Alexandra Rauch, Carolina Schiappacasse, Anne Sinnott, Kelly Tikao, Xia Zhang για την συμβολή τους στην στρατολόγηση συνεργατών αφήγησης. Πολλοί άνθρωποι παρείχαν μία αφήγηση αλλά δεν μπορούν όλοι να συμπεριληφθούν στην έκθεση αυτή. Παρέχονται μόνο το πρώτο όνομα του κάθε αφηγητή και η χώρα καταγωγής του για λόγους απορρήτου.
xii
Συντελεστές
Επιστημονικοί κριτές Fin Biering-Sørensen, Johan Borg, Martin Brinkhof, Douglas Brown, "omas Bryce, Paola Bucciarelli, Marcel Dijkers, Pat Dorsett, Inge Eriks-Hoogland, Reuben Escorpizo, Szilvia Geyh, Ellen Hagen, Claes Hultling, Rebecca Ivers, Desleigh de Jonge, Chapal Khasnabis, Ingeborg Lidal, Anna Lindström, Rod McClure, Stephen Muldoon, Rachel Müller, Claudio Peter, Ranjeet Singh, Alexandra Rauch, Jan Reinhardt, Marcalee Sipski Alexander, John Stone, "omas Stripling, Denise Tate, Armando Vasquez, Eric Weerts, Gale Whiteneck.
Πρόσθετοι συνεργάτες Τοπικοί σύμβουλοι Sergio Aito, Fin Biering-Sørensen, Susan Charlifue, Yuying Chen, Harvinder Chhabra, Wagih ElMasri(y), Stella Engel, Michael Fitzharris, Harish Goyal, Sonjade Groot, Lisa Harvey,Nazirah Hasnan, Jane Horsewell, Jianan Li, Sue Lukersmith, Ketna Mehta, Stephen Muldoon, Joanne Nunnerley, Marcel Post, Shivjeet Raghaw, Cyril Siriwardane, Tomasz Tasiemski, Esha "apa, Sara Varughese, Dajue Wang, Eric Weerts, Lucas van der Woude. Κανένας από τους ειδικούς που ενεπλάκη στην ανάπτυξη της παρούσας αναφοράς δεν δήλωσε κάποια σύγκρουση συμφερόντων.
xiii
xiv
Κεφάλαιο 1 Κατανοώντας την Κάκωση του Νωτιαίου Μυελού
1
"Πριν την ΚΝΜ , ήμουν ένα πολύ ανεξάρτητο άτομο, με πολύ έντονη κοινωνική ζωή και πολλούς φίλους, δούλευα πολύ σκληρά, ταξίδευα πολύ, τελειώνοντας τις σπουδές μου στη νομική, έβγαινα ραντεβού… Η ζωή μου ήταν όμοια με οποιασδήποτε άλλης νεαρής κοπέλας, με πολλές επιθυμίες να ζήσει. Μετά την ΚΝΜ, τα πάντα άλλαξαν και πολλά όνειρα διακόπηκαν - να ζήσω μόνη μου, να τελειώσω τις σπουδές μου, να κάνω οικογένεια". (Claudia, Βραζιλία) "Καθώς ο πατέρας μου έκανε ποδήλατο με το τρίκυκλο και η μητέρα μου καθισμένη με κρατούσε στην αγκαλιά της, ένα αμάξι έπεσε πάνω στο τρίκυκλο. Σκοτώθηκαν και οι δύο. Εγώ επέζησα αλλά με παραπληγία από την ηλικία των 2 χρονών. Με μεγάλωσε ο παππούς μου που ζούσε σε μια φτωχογειτονιά στην Μπανγκόκ. Αργότερα, με έστειλαν σε ένα σχολείο για παιδιά με ειδικές ανάγκες. Τώρα είμαι 11 χρονών και έχω παρατήσει το σχολείο. Ο εγκέφαλός μου δε λειτουργεί καλά. Έχω άσχημη μνήμη αλλά μπορώ να χειρίζομαι το αναπηρικό αμαξίδιο χωρίς δυσκολία. Ευτυχώς, ο κος Β, ένας τετραπληγικός επιχειρηματίας, και η σύζυγός του με συνάντησαν και αποφάσισαν να με φροντίζουν. Τώρα ζω μαζί τους. Μου έδωσαν ένα αθλητικό αμαξίδιο και σχεδιάζουν για μένα να γίνω εθνικός αθλητής με παραπληγία στο μέλλον, και νομίζω ότι θα τα καταφέρω". (Anonymous, Ταϊλάνδη) "Η επιστροφή μου στην κοινότητα μετά το πρόγραμμα αποκατάστασης ξεκίνησε με την υποδοχή μου στο αεροδρόμιο. Έκτοτε μπήκα σε μια άλλη φάση της ζωής, αυτής σε αναπηρικό αμαξίδιο. Σκεφτόμουν ότι δε θα μπορούσα να ζήσω τη ζωή μου όπως ήταν πριν. Ντρεπόμουν και δεν ήθελα να δω τους φίλους μου - ήμουν διαφορετικός τώρα - είχα αλλάξει. Δεν μπορούσα να παίξω ποδόσφαιρο, να τρέξω, να πάω κάμπινγκ, να πάω με το ποδήλατό μου στον κοντινό ποταμό. Αυτό που ήθελα μόνο ήταν να μένω μέσα και να κρύβομαι. Χρειάστηκαν περίπου 6 μήνες μέχρι να με πείσει η πρώτη μου κοινωνική λειτουργός να βγώ από το σπίτι. Πριν να επιστρέψω στην κοινότητα, είχε ήδη κανονίσει να τοποθετηθούν ειδικές ράμπες στο σχολείο και να υπάρχουν προσβάσιμες τουαλέτες. Σταδιακά άρχισε να χτίζεται η εμπιστοσύνη μου. Το μπάσκετ ήταν το αγαπημένο μου άθλημα στο παρελθόν, και όταν ήμουν στο τμήμα αποκατάστασης έμαθα να παίζω μπάσκετ με το αναπηρικό αμάξιδιο. Έδειξα σε μερικούς φίλους μου μερικά κόλπα που μπορούσα να κάνω με το αμαξίδιό μου. Οι καθηγητές άρχισαν να με ενθαρρύνουν να συμμετέχω στο σχολείο και στην κοινωνία πηγαίνοντας κοντινές εκδρομές για παρατήρηση φυτών και ταξιδεύοντας στο Cairns σε σχολική εκδρομή. Η υποστήριξη από τους καθηγητές, τους φίλους και την οικογένεια ήταν ενθαρρυντική". (Alfred, Αυστραλία)
2
Κατανοώντας την Κάκωση του Νωτιαίου Μυελού Η Κάκωση Νωτιαίου Μυελού (ΚΝΜ) είναι μια ιατρικώς πολύπλοκη κατάσταση που διαταράσσει την ζωή. Από ιστορικής πλευράς, έχει συσχετιστεί με πολύ υψηλά ποσοστά θνησιμότητας. Ωστόσο σήμερα, σε χώρες με υψηλά εισοδήματα, η ΚΝΜ μπορεί να θεωρηθεί λιγότερο ως το τέλος μιας αξιόλογης ή παραγωγικής ζωής και περισσότερο ως μια προσωπική και κοινωνική πρόκληση που μπορεί να ξεπεραστεί με επιτυχία. Αυτή η αλλαγή αντικατοπτρίζει μια καλύτερη πρόγνωση, που σημαίνει ότι όσοι καταφέρουν να ξεπεράσουν την κρίσιμη οξεία φάση, μπορούν να ζήσουν και να προοδεύσουν. Για παράδειγμα, τα άτομα που θα υποστούν ΚΝΜ μπορούν πλέον να ωφεληθούν κυρίως από τη βελτιωμένη αντιμετώπιση στα τμήματα των επειγόντων περιστατικών, από τις αποτελεσματικές παρεμβάσεις στην ιατρική και στην αποκατάσταση, και από τεχνολογικά μέσα, όπως αναπνευστικά βοηθήματα, κατάλληλα αναπηρικά αμαξίδια, σε συνδυασμό με πιο εκτεταμένες κοινωνικές υπηρεσίες και πιο προσβάσιμα περιβάλλοντα. Αυτό έχει σαν αποτέλεσμα, να σώζονται ζωές και να μεγιστοποιείται η λειτουργικότητα. Πολλά άτομα με ΚΝΜ μπορούν πλέον να προσδοκούν όχι απλά μεγαλύτερη διάρκεια ζωής, αλλά επίσης μια πιο πλήρη και πιο παραγωγική ζωή, σε σχέση με αυτή που θα είχαν οι παλαιότερες γενεές. Σε χώρες με χαμηλά εισοδήματα η κατάσταση είναι διαφορετική. Η τραυματική κάκωση νωτιαίου μυελού συχνά παραμένει μια καταληκτική κατάσταση. Τα περισσότερα άτομα με ΚΝΜ σε μια χώρα όπως η Σιέρρα Λεόνε πεθαίνουν μετά από λίγα χρόνια μετά την κάκωση (1). Σε χώρες με χαμηλά εισοδήματα, και σε αρκετές με μεσαία εισοδήματα, η διαθεσιμότητα ποιοτικών βοηθητικών μέσων όπως αναπηρικά αμαξίδια είναι πολύ περιορισμένη, οι υπηρεσίες ιατρικής και αποκατάστασης είναι ελάχιστες, και οι ευκαιρίες συμμετοχής σε όλους τους τομείς της προσωπικής και κοινωνικής ζωής είναι περιορισμένες (2). Η κατάσταση σε πολλές αναπτυσσόμενες χώρες σήμερα είναι παρόμοια με αυτή που επικρατούσε στην Ευρώπη και στη Βόρεια Αμερική στο 1940 (3). Η φτώχεια κάνει τη ζωή ακόμη πιο δύσκολη για τα άτομα με ΚΝΜ (4). Ωστόσο, το γεγονός ότι μια τέτοια μεγάλη πρόοδος στην επιβίωση και στη συμμετοχή έχει παρατηρηθεί σε χώρες με υψηλά εισοδήματα, σε σχετικά σύντομο χρονικό διάστημα, θα πρέπει να είναι ένας λόγος να είμαστε αισιόδοξοι για τα άλλα μέρη του κόσμου. Με τις κατάλληλες πολιτικές παρεμβάσεις, θα πρέπει να είναι δυνατή η επιβίωση, η ευημερία και η συμμετοχή ατόμων με ΚΝΜ οπουδήποτε στον κόσμο. Επειδή κανείς δε ζει προστατευμένος σε μια γυάλινη σφαίρα, βασικό για την κατανόηση του πώς ζουν τα άτομα με ΚΝΜ, είναι το συνολικό φυσικό, κοινωνικό και συμπεριφορικό περιβάλλον στο οποίο βιώνουν την καθημερινότητά τους. Η ποιότητα ζωής των ατόμων με ΚΝΜ εξαρτάται σημαντικά από το πόσο το περιβάλλον τους διευκολύνει ανάλογα με τις παροχές και τις υπηρεσίες που τους διαθέτει, ή από το πόσο στέκεται εμπόδιο όταν τα άτομα αυτά έρχονται αντιμέτωπα με ρατσιστικές συμπεριφορές ή άλλες δυσκολίες, όπως η αποτυχία παροχής υποστηρικτικών υπηρεσιών και πόρων. 3
1
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Το συνολικό αντίκτυπο της ΚΝΜ στο άτομο καθώς και στην κοινωνία στο σύνολό της, εξαρτάται από πολλούς παράγοντες, στους οποίους περιλαμβάνονται: ■ η ηλικία που εμφανίζεται η κάκωση (νωρίς ή αργά κατά την παραγωγική περίοδο της ζωής του ατόμου) ■ η έκταση της κάκωσης ■ η διαθεσιμότητα και τα χρονικά πλαίσια των παροχών και των υπηρεσιών ■ το περιβάλλον στο οποίο ζει το άτομο – όσον αφορά φυσικούς παράγοντες, κοινωνικούς, οικονομικούς και νοοτροπίες. Οι αλλαγές στην πολιτική, που έχουν σκοπό να διασφαλίσουν την έγκαιρη και αποτελεσματική ιατρική ανταπόκριση και συνεχιζόμενη αποκατάσταση για πλήρη επανένταξη, είναι οικονομικά αποδοτικές και κοινωνικά ευεργετικές. Το κόστος της παροχής άμεσης επείγουσας ιατρικής περίθαλψης αντισταθμίζεται από το γεγονός ότι σώζονται άμεσα ανθρώπινες ζωές. Εφόσον η ΚΝΜ δυσανάλογα επηρεάζει τα νεότερα άτομα με πολλά χρόνια παραγωγικής ζωής να τους απομένουν, η αποτυχία διάθεσης παροχών για την αποκατάστασή τους καταλήγει σε ουσιαστική κοινωνική σπατάλη που θα μπορούσε να αποφευχθεί μέσα από αποδοτικά μέτρα. Οι δαπάνες για τις ιατρικές υπηρεσίες αποκατάστασης σε άτομα με ΚΝΜ είναι χρήματα που δαπανώνται ορθά. Πιο σημαντικά, το να σώζονται ζωές, να προάγεται η ποιότητα της ζωής και να διατηρείται η παραγωγικότητα είναι κοινωνικές και ανθρωπιστικές προσταγές. Οι συστάσεις αυτής της αναφοράς τονίζουν τις αλλαγές στην πολιτική και στη πρακτική που, όπως αποδεικνύεται, μπορούν να επιφέρουν μεγάλη πρόοδο στην υγεία και στην ποιότητα ζωής των ατόμων με ΚΝΜ. Τα βήματα για τη βελτίωση της ζωής των ατόμων με ΚΝΜ πρέπει να συνοδεύονται από μέτρα πρόληψης της ΚΝΜ. Αυτή η αναφορά καταδεικνύει ότι πολλά από τα πιο συχνά αίτια της τραυματικής ΚΝΜ - τροχαία ατυχήματα, πτώσεις, τραυματισμοί από αθλητικές δραστηριότητες, από δραστηριότητες αναψυχής, από εκδηλώσεις βίας - μπορούν να γίνουν κατανοητά, να προβλεφθούν και σε μεγάλο ποσοστό να προληφθούν. 4
Στόχος και σκοπός αυτής της αναφοράς Ο στόχος των Διεθνών Προοπτικών για τα άτομα με Κάκωση Νωτιαίου Μυελού είναι: ■ να συγκεντρώσουν και να συνοψίσουν τις πληροφορίες όσον αφορά στην ΚΝΜ, ιδίως την επιδημιολογία, τις υπηρεσίες, τις παρεμβάσεις και τις σχετικές πολιτικές, μαζί με τις εμπειρίες που έχουν βιώσει τα άτομα με ΚΝΜ κατά τη διάρκεια της ζωής τους σε όλο τον κόσμο. ■ να προβούν σε συστάσεις για δράσεις βασισμένες σε αυτά τα στοιχεία και σύμφωνα με τα ιδανικά της ένταξης και συμμετοχής όπως εκφράζονται στη Σύμβαση των Ηνωμένων Εθνών για τα Δικαιώματα των Ατόμων με Αναπηρία. (Convention on the Rights of Persons with Disabilities - CRPD) (5). Η παρούσα αναφορά τεκμηριώνει το μέγεθος και τις τάσεις της ΚΝΜ, διερευνά στρατηγικές πρόληψης, αναλύει την κατάσταση των ατόμων με ΚΝΜ σε όλο τον κόσμο, και δίνει παραδείγματα για λύσεις μέσα από μια σειρά οικονομικών ρυθμίσεων που μπορούν να ενισχύσουν την εμπειρία του να ζεις με ΚΝΜ. Αυτές οι λύσεις κυμαίνονται από την χωρίς περιορισμό πρόσβαση σε υπηρεσίες αποκατάστασης μέχρι στη βελτίωση στην πρόσβαση στην εκπαίδευση και στην εργασία, και στην ενίσχυση της υποστήριξης για οικογενειακή και κοινωνική ζωή. Αυτό το εισαγωγικό κεφάλαιο προσφέρει ένα γενικό προσανατολισμό στην ΚΝΜ, περιλαμβάνοντας μια μικρή ανασκόπηση της ιατρικής πλευράς της ΚΝΜ για μη ειδικούς και το ιστορικό της ΚΝΜ. Επίσης περιλαμβάνει μια συζήτηση στο πώς η ΚΝΜ, και τα συστήματα και οι υπηρεσίες που απαιτούνται για τη βελτίωση της εμπειρίας του να ζεις με ΚΝΜ, μπορεί να βοηθήσει την πιο ευρεία εκτίμηση της ανεπάρκειας της κοινωνικής ανταπόκρισης στις ανάγκες των ατόμων με προβλήματα υγείας και συνοδές αναπηρίες.
Κεφάλαιο 1
Κατανοώντας την Κάκωση Νωτιαίου Μυελού
Τι είναι η Κάκωση Νωτιαίου Μυελού; Η ιατρική διάσταση Η κατανόηση της βασικής ανατομίας και φυσιολογίας είναι σημαντική, αν και η εμπειρία του να ζεις με ΚΝΜ ποικίλει αρκετά ανάλογα με τους περιβαλλοντικούς παράγοντες. Ο νωτιαίος μυελός εντοπίζεται μέσα στο σπονδυλικό σωλήνα (βλ. Εικ. 1.1). Εκτείνεται κάτω από τον εγκέφαλο μέχρι το ύψος του Ο1-Ο2 Σχήμα 1.1.
οσφυικού σπονδύλου. τελειώνοντας στο μυελικό κώνο. Η συνέχεια από το τέλος του νωτιαίου μυελού, στο σπονδυλικό σωλήνα, αποτελεί την ιππουρίδα (ή ουρά αλόγου). Ο νωτιαίος μυελός αποτελείται από τμήματα, νευρολογικά επίπεδα που αντιστοιχούν στις νευρικές ρίζες που εξέρχονται ανάμεσα σε δύο σπονδύλους. Υπάρχουν 31 ζεύγη νωτιαίων νευρικών ριζών: 8 αυχενικά, 12 θωρακικά, 5 οσφυικά, 5 ιερά και 1 κοκκυγικό. Δεδομένης της διαφοράς σε μήκος των νωτιαίου σωλήνα και του νωτιαίου μυελού, τα νευρολογικά επίπεδα δεν είναι απαραίτητο να ανταποκρίνονται στα σπονδυλικά επίπεδα.
Διαμήκης οργάνωση του νωτιαίου μυελού (με τα αυχενικά, θωρακικά, οσφυικά και ιερά μυελοτόμια σκιαγραφημένα), των σπονδυλικών σωμάτων, των σπονδυλικών νεύρων και μια αδρή παρουσίαση των κύριων λειτουργιών του νωτιαίου μυελού νεύρα
Λειτουργίες C1-C4: Αναπνοή Κίνηση κεφαλής και αυχένα Αυχενικά νωτιαία νεύρα C4 – T1: Έλεγχος καρδιακού ρυθμού Κίνηση άνω άκρων (αγκώνας-καρπός C5-C7, δάκτυλα C8-T1)
βάση κρανίου
σπόνδυλοι
Θωρακικά νωτιαία νεύρα T2-T12: Ισορροπία κορμού Έλεγχος θερμοκρασίας Κοιλιακοί μύες
μυελικός κώνος ιππουρίδα
Οσφυϊκά νωτιαία νεύρα L1-S1: Κίνηση κάτω άκρων (ισχίο, πόδι, άκρο πόδι)
Ιερά νωτιαία νεύρα S2-S4-5: Λειτουργία ουροδόχου κύστεως, εντέρου και σεξουαλική λειτουργία
κόκκυγας
Κοκκυγικό νεύρο
5
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Παρόλο που υπάρχει διαφωνία σχετικά με το τι ταξινομείται ως "Κάκωση Νωτιαίου Μυελού", όλες οι βλάβες του νωτιαίου μυελού, του μυελικού κώνου και της ιππουρίδας θεωρούνται στα πλαίσια του περιεχομένου αυτού του συγγράμματος. Η βλάβη του νωτιαίου μυελού μπορεί να είναι τραυματική ή μη τραυματική. Η τραυματική ΚΝΜ μπορεί να είναι το αποτέλεσμα πολλών αιτιών - συμπεριλαμβανομένων των πτώσεων, των τροχαίων ατυχημάτων, των εργατικών και των αθλητικών τραυματισμών και της κακοποίησης. Η μη τραυματική ΚΝΜ, από την άλλη πλευρά, συνήθως οφείλεται σε υποκείμενη παθολογία - όπως λοιμώδη νοσήματα, όγκοι, μυοσκελετικές παθήσεις όπως οστεοαρθρίτιδα, και συγγενείς παθήσεις όπως η δισχιδής ράχη, η οποία είναι έλειμμα του νευρικού σωλήνα που προκύπτει κατά τη διάρκεια της ανάπτυξης του εμβρύου. Τα συμπτώματα της βλάβης του νωτιαίου μυελού εξαρτώνται από την έκταση της κάκωσης ή της μη τραυματικής αιτίας, και μπορούν να περιλαμβάνουν απώλεια της αισθητικότητας ή του κινητικού ελέγχου των κάτω άκρων, του κορμού και των άνω άκρων, καθώς επίσης την απώλεια της αυτόνομης (ακούσιας) ρύθμισης του σώματος. Αυτό μπορεί να επηρεάσει την αναπνοή, τον καρδιακό ρυθμό, την αρτηριακή πίεση, τη ρύθμιση της θερμοκρασίας του σώματος, τον έλεγχο της κύστης και του εντέρου και τη σεξουαλική λειτουργία. Γενικά, όσο υψηλότερο είναι το επίπεδο της βλάβης στο νωτιαίο μυελό τόσο πιο εκτεταμένο θα είναι το εύρος των διαταραχών. Η αυχενική ΚΝΜ κυρίως προκαλεί αισθητική και κινητική απώλεια (παράλυση) στα άνω άκρα, στον κορμό και στα κάτω άκρα, μια κατάσταση που ονομάζεται τετραπληγία. Ένα άτομο με Α4 ή υψηλότερη βλάβη μπορεί να χρειάζεται αναπνευστήρα για να αναπνέει επειδή η βλάβη επιδρά άμεσα στον έλεγχο του αυτόνομου συστήματος. Η θωρακική ΚΝΜ κυρίως προκαλεί αισθητική και/ή κινητική απώλεια του κορμού και των κάτω άκρων, μια κατάσταση που ονομάζεται παραπληγία. Η οσφυική ΚΝΜ τυπικά προκαλεί αισθητική και κινητική απώλεια στα κάτω άκρα. Όλοι οι τύποι ΚΝΜ μπορούν επίσης να προκαλέσουν χρόνιο πόνο. Η έκταση και η σοβαρότητα της απώλειας του αισθητικού, κινητικού και αυτόνομου συστήματος από 6
την ΚΝΜ δεν εξαρτάται μόνο από το επίπεδο της βλάβης του νωτιαίου μυελού αλλά και από το αν η βλάβη είναι "πλήρης" ή "ατελής". Σύμφωνα με τα Διεθνή Πρότυπα Νευρολογικής Ταξινόμησης της ΚΝΜ [International Standards for Neurological Classification of SCI, (ISNCSCI)], με την Αμερικανική Εταιρεία Κακώσεων Νωτιαίου Μυελού [American Spinal Injury Association (ASIA) Impairment scale (AIS)], η ΚΝΜ θεωρείται πλήρης αν δεν υπάρχει αισθητική και κινητική λειτουργία στα Ι4-Ι5 νευροτόμια. Μία ατελής ΚΝΜ δεν είναι λιγότερη σοβαρή βλάβη και επίσης μπορεί να οδηγήσει σε σοβαρή αναπηρία, παρόλο που μία μερική αισθητική και/ή κινητική λειτουργικότητα διατηρείται κάτω από το επίπεδο της βλάβης συμπεριλαμβανομένων των περιφερικότερων ιερών μυελοτομίων Ι4-Ι5.
Η ιστορική διάσταση της κάκωσης του νωτιαίου μυελού Η έναρξη της αποτελεσματικής αντιμετώπισης της ΚΝΜ χρονολογείται από το έργο του Αμερικανού νευροχειρουργού Dr Donald Munro στο νοσοκομείο Boston City στα 1930 (6). Η προσέγγισή του ήταν παράδειγμα προς μίμηση για τον Sir Ludwig Guttmann που ίδρυσε τη μονάδα ΚΝΜ στο νοσοκομείο Stoke Mandeville στη Μεγάλη Βρετανία το 1944 (έγινε το Εθνικό Κέντρο Κακώσεων Νωτιαίου Μυελού το 1952). Το επικρατές ποσοστό θνησιμότητας της ΚΝΜ ήταν 80% και άρχισε να μειώνεται, χάρη στη δίωρη εναλλαγή θέσης και στην περιποίηση του δέρματος, μαζί με την καλύτερη αντιμετώπιση της λειτουργίας της ουροδόχου κύστεως. Τα βελτιωμένα λειτουργικά αποτελέσματα ήταν αποτέλεσμα φυσικοθεραπείας και εργοθεραπείας, και μιας πιο ολιστικής φροντίδας ανταποκρινόμενης στις οικονομικο-κοινωνικές ανάγκες των ασθενών (7, 8). Ο Guttmann έδωσε έμφαση στην άθληση ως μέθοδο θεραπείας και ήταν ο ιδρυτής των αγώνων Stoke Mandeville, που στη συνέχεια αποτέλεσαν τους Παρολυμπιακούς Αγώνες το 1960 (9). Αυτά τα αρχικά κέντρα αποτέλεσαν πρότυπα για τις μονάδες ΚΝΜ στη Μεγάλη Βρετανία, στις ΗΠΑ και σε άλλες χώρες. Η εξελισσόμενη εμπειρία για τις ΚΝΜ επίσης αν-
Κεφάλαιο 1
Κατανοώντας την Κάκωση Νωτιαίου Μυελού
τανακλά ευρύτερες εξελίξεις στην κατανόηση της αναπηρίας γενικότερα. Η κοινωνική αντιμετώπιση της αναπηρίας έχει προφανώς αλλάξει τις τελευταίες δεκαετίες, κυρίως λόγω της αποδοχής της αναπηρίας από τα ίδια τα άτομα. Οι οργανώσεις των ατόμων με αναπηρία έχουν αγωνιστεί για την επίτευξη πλήρους ένταξης και συμμετοχής σε όλους τους τομείς της κοινωνίας. Εννοιολογικά, η εστίαση έχει μετατοπιστεί από την αναπηρία ως μεμονωμένο έλλειμμα, στην αναπηρία ως το αποτέλεσμα πολύπλοκων αλληλεπιδράσεων μεταξύ χαρακτηριστικών της υγείας και της λειτουργικότητας του ατόμου με τις φυσικές, κοινωνικές και περιβαλλοντικές δυνατότητές του. Παράλληλα με την εννοιολογική αλλαγή, η αναπηρία έχει γίνει κατανοητή ως μια μέριμνα για τα ανθρώπινα δικαιώματα. Αυτή η καλά τεκμηριωμένη μετατροπή (10-12) έχει καταλήξει στην CRPD (5). Τα άτομα με ΚΝΜ έχουν παίξει κυρίαρχο ρόλο στα κινήματα ατόμων με αναπηρία σε πολλές χώρες, ξεκινώντας με τους πρωτοπόρους Independent Living in Berkeley, στην Καλιφόρνια, στις ΗΠΑ, στα τέλη των 1960 και 1970 (10).
Η Κάκωση Νωτιαίου Μυελού ως πρόκληση για τα συστήματα υγείας και την κοινωνία Η πολυπλοκότητα της βιωματικής εμπειρίας της ΚΝΜ και των διακυμάνσεων αυτής της εμπειρίας ανά τον κόσμο σημαίνει ότι, παρόλο που έχει συγκριτικά χαμηλό επιπολασμό, η ΚΝΜ έχει ευρύτερη εμπλοκή στην παρακολούθηση των υπηρεσιών υγείας. Αρχικά, ένα άτομο με ΚΝΜ θα περάσει σχεδόν από όλες τις δομές παροχής υπηρεσιών υγείας που η χώρα του του παρέχει: τμήμα επειγόντων, μονάδα εντατικής θεραπείας, τμήμα αυξημένης φροντίδας, χειρουργικά τμήματα, τμήματα αποκατάστασης, συμπεριλαμβανομένων της κοινωνικής και επαγγελματικής επανένταξης και της συνεχιζόμενης παροχής υπηρεσιών υγείας σε επίπεδο πρωτοβάθμιας περίθαλψης. Η ανατιμετώπιση ατόμων με ΚΝΜ είναι αποδεικτική της επάρκειας υπηρεσιών, συστημάτων και πολιτικών μιας χώρας. Μπορούν επίσης να βοηθήσουν τους κλινικούς, τους επαγγελματίες υγείας, τους ερευνητές και
τους αρμόδιους πολιτικούς φορείς να κατανοήσουν τα δυνατά και αδύνατα σημεία του συστήματος υγείας τους. Η ανατιμετώπιση ατόμων με ΚΝΜ είναι ένας καλός δείκτης για το πως το γενικό σύστημα υγείας λειτουργεί ή αποτυγχάνει να λειτουργεί. Πέρα από τον τομέα της υγείας, το άτομο με ΚΝΜ χρειάζεται υπηρεσίες, πηγές και πρόσβαση στους κοινωνικούς, εκπαιδευτικούς και οικονομικούς τομείς για να ζήσει μια πλήρη και πλούσια ζωή. Όσον αφορά στην κοινωνία, ομάδες αυτοβοήθειας, ομάδες ασθενών και άλλες υποστηρικτικές ομάδες καθώς και οργανώσεις παίζουν σημαντικό ρόλο στην προσφορά γνώσης, συμβουλών και στην πίεση για πολιτικές αλλαγές. Εάν οι κυβερνήσεις και οι κοινωνίες αποτύχουν με τα άτομα με ΚΝΜ, είναι πολύ πιθανό να αποτύχουν και με άτομα με άλλα προβλήματα υγείας. Η έρευνα και τα στοιχεία σχετικά με την εμπειρία για τις ΚΝΜ σχετιζονται γενικά με τη χρηστή πολιτική υγείας και τις ευρύτερες προσπάθειες για την άρση των εμποδίων στην παροχή υπηρεσιών υγείας. Το αντίστροφο είναι επίσης σωστό: οι κλινικοί ιατροί και οι ερευνητές των ΚΝΜ μπορούν να επωφεληθούν από έρευνες σε άλλες πιο συχνές καταστάσεις που παρουσιάζουν ορισμένες ή πολλές από τις βλάβες και τις καθημερινές προκλήσεις που αντιμετωπίζουν τα άτομα με ΚΝΜ. Με βάση αυτό, η έρευνα παραδείγματος χάρη, για προσβάσιμα δημόσια μέσα μεταφοράς ή για υπηρεσίες επιστροφής στην εργασία, μπορεί να επικεντρωθεί σε πιο συχνές παθολογικές παθήσεις και αναπηρίες, και τα καλύτερα αποδεικτικά στοιχεία μπορούν να μην περιορίζονται σε άτομα με ΚΝΜ αλλά σε άτομα με "κινητικά προβλήματα" ή "χρήστες αναπηρικών αμαξιδίων". Το σύγγραμμα αυτό εκμεταλλεύεται όλη τη σχετική υψηλής ποιότητας έρευνα, είτε απευθύνεται συγκεκριμένα στη ΚΝΜ είτε σε ένα ευρύτερο πεδίο αναπηρίας.
Εργαλεία για την κατανόηση της εμπειρίας της κάκωσης νωτιαίου μυελού Δύο εργαλεία είναι απαραίτητα για την κατανόηση της εμπειρίας της ΚΝΜ. Η CRPD που παρέχει μια ηθική πυξίδα προωθώντας την αναπηρία σαν ένα αν7
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
θρώπινο δικαίωμα και αναπτυξιακό ζήτημα, και το WHO’s International Classification of Functioning, Disability and Health (ICF), που παρέχει ένα μοντέλο λειτουργικότητας και αναπηρίας για εννοιολογική σαφήνεια καθώς και μια επιδημιολογική ταξινόμηση για τη συλλογή δεδομένων και την κλινική πράξη. Η CRPD παρέχει τον προσανατολισμό όσον αφορά στα ανθρώπινα δικαιώματα σε αυτό το σύγγραμμα. Προσδιορίζει τα αστικά, πολιτιστικά, πολιτικά, κοινωνικά δικαιώματα των ατόμων με αναπηρίες, συμπεριλαμβανομένων των ατόμων με ΚΝΜ. Η CRPD προέκυψε μετά από πολύχρονη λε-
πτομερή καταγραφή και διαρκή συμμετοχή των οργανώσεων ατόμων με αναπηρία και άλλες κοινωνικές ομάδες πολιτών. Η Σύμβαση περιγράφει όχι μόνο γενικές φιλοδοξίες - "...την προώθηση, την προστασία, και τη διασφάλιση της πλήρους και ισότιμης επικαρπίας όλων των ανθρωπίνων δικαιωμάτων και τις θεμελιώδεις ελευθερίες των ατόμων με αναπηρία και την προώθηση του σεβασμού και της αξιοπρέπειάς τους"- αλλά επίσης αναλυτικά και συγκεκριμένα ανθρώπινα δικαιώματα στον τομέα της υγείας, της εργασίας και της οικογενειακής ζωής.
Πίνακας 1.1. Διεθνής Ταξινόμηση της Λειτουργικότητας, της Ανικανότητας και της Υγείας International Classification of Functioning, Disability and Health (ICF) Η ICF αναπτύχθηκε μετά από μια μακρά διαδικασία που απασχόλησε ακαδημαϊκούς, κλινικούς ιατρούς και άτομα με αναπηρίες (13). Η ICF αναγνωρίζει ως καθοριστικούς παράγοντες αναπηρίας όχι μόνο τις καταστάσεις υγείας αλλά και τους περιβαλλοντικούς παράγοντες (προϊόντα και τεχνολογία, το φυσικό και δομημένο περιβάλλον, την υποστήριξη και τις σχέσεις, τις στάσεις και τις υπηρεσίες, τα συστήματα και τις πολιτικές). Η ICF αναγνωρίζει επίσης προσωπικούς παράγοντες, όπως τα κίνητρα και την αυτοεκτίμηση, που μπορεί να επηρεάσουν τη συμμετοχή ενός ατόμου στην κοινωνία. Επίπλέον, διακρίνει την ικανότητα ενός ατόμου να εκτελεί ενέργειες, από την πραγματική επίδοση του ατόμου στις συγκεκριμένες ενέργειες - μια διάκριση που τονίζει τον ουσιώδη ρόλο του περιβάλλοντος του ατόμου. Στην ICF, τα προβλήματα της ανθρώπινης λειτουργικότητας κατηγοριοποιούνται σε τρεις αλληλένδετους τομείς: (impairments) βλάβες που είναι προβλήματα στις λειτουργίες του σώματος ή αλλαγές στη δομή του σώματος (πχ. παράλυση ή απώλεια του ελέγχου της κύστης και του εντέρου), περιορισμοί στη λειτουργικότητα που δυσκολεύουν την εκτέλεση δραστηριοτήτων (πχ. βάδιση ή λήψη τροφής), και περιορισμοί συμμετοχής που είναι προβλήματα σε κάθε τομέα της ζωής (πχ. διακρίσεις στην επαγγελματική απασχόληση και στα μέσα μαζικής μετακίνησης). Οι καταστάσεις υγείας κατανοούνται ως παθήσεις, τραύματα και διαταραχές, ενώ οι βλάβες είναι συγκεκριμένα ελλείμματα στις λειτουργίες του σώματος, όπως η παράλυση που σχετίζεται με καταστάσεις υγείας. Περιβαλλοντικοί παράγοντες μπορούν να σταθούν εμπόδιο που χειροτερεύει την εμπειρία της ΚΝΜ (πχ. Μεταφορικά μέσα που δεν είναι προσβάσιμα σε αναπηρικά αμαξίδια), ή διευκολύνσεις που βελτιώνουν αυτή την εμπειρία (πχ. αναπηρικά αμαξίδια και υπηρεσίες αποκατάστασης). Η αναπηρία (disability) χρησιμοποιείται στην ICF για να αναφερθεί στις δυσκολίες που παρουσιάζονται στον καθένα ή και στους τρεις τομείς τις λειτουργικότητας. Προκύπτει από την αλληλεπίδραση των καταστάσεων υγείας με παράγοντες τόσο περιβαλλοντικούς όσο και προσωπικούς, όπως παρουσιάζονται στην παρακάτω εικόνα. Παρουσίαση της Διεθνούς Ταξινόμησης Λειτουργικότητας, Αναπηρίας και Υγείας Κατάσταση Υγείας (διαταραχή ή νόσος)
Λειτουργίες και όργανα
Δραστηριότητες
Συμμετοχή
Περιβαλλοντικοί παράγοντες
Προσωπικοί παράγοντες
Συναφείς παράγοντες
Πηγές (14).
8
Κεφάλαιο 1
Κατανοώντας την Κάκωση Νωτιαίου Μυελού
Όπως θα αναλυθεί στα επόμενα κεφάλαια, η CRPD καθορίζει λεπτομερώς τα ακριβή σημεία στα οποία απαιτούνται τροποποιήσεις στα ανθρώπινα δικαιώματα όπως ορίζει η Σύμβαση. Τα κεντρικά θέματα αυτού του συγγράμματος - οι επιπτώσεις του στίγματος και των συμπεριφορών, ο βαθμός στον οποίο το περιβάλλον είναι προσβάσιμο, η διαθεσιμότητα κοινωνικών και υγειονομικών υπηρεσιών και το εύρος συμμετοχής των ατόμων με ΚΝΜ στην εκπαίδευση, στην εργασία, και στην οικογενειακή και κοινωνική ζωή - είναι επίσης θέματα που επικεντρώνεται η CRPD. Επιπρόσθετα, και μοναδικά σε αυτή τη συνθήκη των Ηνωμένων Εθνών για τα ανθρώπινα δικαιώματα, η CRPD καθορίζει ότι οι χώρες μέλη του θα πρέπει να συλλέγουν στατιστικά δεδομένα (Άρθρο 31) και θα πρέπει να καθιερώσουν ανεξάρτητους μηχανισμούς παρακολούθησης των ανθρωπίνων δικαιωμάτων (Άρθρο 33) για να διασφαλιστεί ότι η πρόοδος στην εφαρμογή των υποχρεώσεων της CRPD μπορεί να αποδειχτεί με στοιχεία. Οι χώρες είναι υποχρεωμένες όχι απλώς να μεταρρυθμίσουν τους νόμους και τις πρακτικές σε σχέση με την αναπηρία, αλλά είναι υποχρεωμένες να παρέχουν αποδείξεις ότι το πραγματοποιούν. Το σύγγραμμα αυτό έχει σχεδιαστεί ώστε να θέσει στη διάθεση των χωρών και των υπηρεσιών τους τα αποδεικτικά στοιχεία που αποτελούν τη βάση για όλες τις υποχρεώσεις προς τα άτομα με ΚΝΜ, καθώς και τις βέλτιστες πρακτικές για την εκπλήρωση αυτών των υποχρεώσεων αυτών.
Ανασκόπηση Το σύγγραμμα αυτό ακολουθεί τη δημοσίευση του ΠΟΥ, WHO/ World Bank World report on disability το 2011, και μελετά μία σημαντική ιατρική κατάσταση με περισσότερες λεπτομέρειες απ’ότι ήταν δυνατό να γίνει στην προαναφερθείσα ευρείας κλίμακας μελέτη (15). Το κοινό αυτής της έκθεσης είναι οι υπεύθυνοι για τη λήψη πολιτικών αποφάσεων, οι διαχειριστές των υπηρεσιών υγείας, οι επαγγελματίες υγείας, οι εκπρόσωποι μη κυβερνητικών οργανώσεων και των οργανώσεων ατόμων με αναπηρία, και όλοι αυτοί που ασχολούνται με τη βελτίωση των υπηρεσιών υγείας για τα άτομα με ΚΝΜ, κυρίως σε χώρες χαμηλού και μεσαίου εισοδήματος. Μετά από αυτό το εισαγωγικό κεφάλαιο, η έκθεση
εξετάζει στο Κεφάλαιο 2 τα καλύτερα διαθέσιμα επιδημιολογικά στοιχεία σχετικά με τον επιπολασμό και την επίπτωση των ΚΝΜ στον κόσμο. Το Κεφάλαιο 3 εξετάζει τις κύριες αιτίες των ΚΝΜ και ερευνά τα προγράμματα πρόληψης για αυτές τις αιτίες και τους παράγοντες κινδύνου. Στη συνέχεια ακολουθεί μια ολοκληρωμένη ανασκόπηση της αποκατάστασης των ΚΝΜ στο Κεφαλαιο 4. Αυτό συνδέεται με μια συζήτηση για τα συστήματα υγείας στο Κεφάλαιο 5 που αντιπαραβάλει τις βέλτιστες πρακτικές παρεμβάσεων και θεραπευτικών στρατηγικών με τα απαραίτητα συστήματα που αποδεδειγμένα απαιτούνται προκειμένου να πραγματοποιηθούν. Το σύγγραμμα στη συνέχεια επικεντρώνεται στις εμπειρίες των ατόμων με ΚΝΜ, ξεκινώντας από τις σχέσεις και τις συμπεριφορές στο κεφάλαιο 6, και προχωρώντας στα γενικά χαρακτηριστικά των ΚΝΜ - και στην προσαρμογή των περιβαλλοντικών παραγόντων στο Κεφάλαιο 7, και μετά μία σε βάθος ματιά στους δύο πιο σημαντικούς τομείς της συμμετοχής - την εκπαίδευση και την εργασία - στο Κεφάλαιο 8. Η έκθεση καταλήγει σε καινοτόμες συστάσεις στο Κεφάλαιο 9. Οι Διεθνείς Προοπτικές στην Κάκωση Νωτιαίου Μυελού προσφέρουν ένα πρακτικό οδηγό για τη βελτίωση της ζωής των ατόμων με ΚΝΜ σε όλο τον κόσμο. Συνοψίζουν τα αποδεικτικά στοιχεία σχετικά με τις ανάγκες και τις ανεκπλήρωτες επιθυμίες, επισημαίνουν πρακτικές σε υπηρεσίες και χώρες που έχουν επιτύχει να ξεπεράσουν τα εμπόδια και αντιμετωπίζουν τα ελλείμματα των υπηρεσιών. Τα μηνύματα κλειδιά σε αυτή την έκθεση είναι τα ακόλουθα: ■ Η ΚΝΜ είναι μία όχι τόσο συχνή αλλά υψηλού κόστους κατάσταση της υγείας. ■ Η συχνότητα των τραυματικών ΚΝΜ μπορεί να μειωθεί μέσω μια σειράς προληπτικών στρατηγικών. ■ Τα ποσοστά θνησιμότητας λόγω ΚΝΜ μπορούν να μειωθούν μέσω μιας κατάλληλης και έγκαιρης υγειονομικής περίθαλψης, η οποία επίσης θα μειώσει και την ανάγκη επαναεισαγωγών λόγων δευτερογενών επιπλοκών. ■ Η μειωμένη ανεξαρτησία ως συνέπεια της ΚΝΜ θα πρέπει να αποφεύγεται με την παροχή υπηρεσιών αποκατάστασης και υποστηρικτικής τεχνολογίας. 9
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
■ Η φτώχεια και ο κοινωνικός αποκλεισμός που συνδέονται με την ΚΝΜ μπορεί να ελαχιστοποιηθούν με την άρση των εμποδίων και την παροχή επαρκούς υποστήριξης. Ενώ η ΚΝΜ θα έχει πάντα αντίκτυπο σε αλλαγές
στη ζωή του ατόμου, δεν χρειάζεται να οδηγήσει στο τέλος της ζωής, ούτε να επιβάλει αδικαιολόγητο κόστος στις οικογένειες και τις κοινωνίες, εφόσον επέλθουν οι κατάλληλες αλλαγές στα συστήματα υγείας και την κοινωνία.
Βιβλιογραφία 1. 2. Gosselin RA, Coppotelli C. A follow up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 Allotey P et!al. The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegics in Australia and Cameroon. Social Science & Medicine, 2003, 57:949-958. doi: http://dx.doi.org/10.1016/S02779536(02)00463-X PMID:12850119 Liverman CT et al., editors. Spinal cord injury: progress, promise, and priorities. Washington, DC, National Academies Press, 2005. Weerts E, Wyndaele JJ. Accessibility to spinal cord injury care worldwide: the need for poverty reduction. Spinal Cord, 2011, 49:767. doi: http://dx.doi.org/10.1038/sc.2011.73 PMID:21720372 United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). Eltorai IM. History of spinal cord medicine. In: Lin VW et al., eds. Spinal cord medicine: principles and practice. New York, NY, Demos Medical Publishing, 2003. Silver JR. History of the treatment of spinal injuries. London, Springer, 2003. Bodner DR. A pioneer in optimism: the legacy of Donald Munro MD. The Journal of Spinal Cord Medicine, 2009, 32:355356. PMID:19777856 Guttmann L. Sport and recreation for the mentally and physically handicapped. Royal Society of Health Journal, 1973, 93:208-212. doi: http://dx.doi.org/10.1177/146642407309300413 PMID:4276814 Driedger D. The last civil rights movement. London, Hurst, 1989. Oliver M. The politics of disablement. Basingstoke, Macmillan and St Martin’s Press, 1990. Charlton J. Nothing about us without us: disability, oppression and empowerment. Berkeley, CA, University of California Press, 1998. Bickenbach JE et!al. Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science & Medicine, 1999, 48:1173-1187. doi: http://dx.doi.org/10.1016/S0277-9536(98)00441-9 PMID:10220018 WHO. International classification of functioning, disability and health. Geneva, World Health Organization 2001, page 18. WHO/World Bank. World report on disability. Geneva, World Health Organization, 2011.
3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15.
10
Κεφάλαιο 2 Μια σφαιρική εικόνα της Κάκωσης Νωτιαίου Μυελού
11
"Μια μέρα ξύπνησα και κοίταξα το ταβάνι. Ήθελα να γυρίσω το κεφάλι μου αλλά δεν μπορούσα. Ήθελα να σηκώσω το χέρι μου αλλά δεν μπορούσα. Τίποτα δεν κινούταν. Άκουγα αρκετή φασαρία αλλά δεν μπορούσα να δω τίποτα. Ξαφνικά εμφανίστηκε δίπλα μου μια νοσοκόμα. Ήθελα να πω κάτι αλλά δεν μπορούσε να με ακούσει. Ήθελα να ουρλιάξω αλλά δεν μπορούσα να βγάλω άχνα. Έκλεισα τα μάτια μου. Τα άνοιξα και πάλι όταν άκουσα να φωνάζουν το όνομα μου, κοίταξα επάνω και είδα τους γονείς μου. Παρόλο που μου φαινόταν ότι είχε περάσει μόλις ένα δευτερόλεπτο από την στιγμή που έκλεισα τα μάτια μου έως την στιγμή που τα άνοιξα και πάλι, είχε περάσει μια ολόκληρη μέρα. Οι γονείς μου, μου είπαν ότι έπασχα από τετραπληγία ότι βρισκόμουν σε ένα νοσοκομείο στις Βρυξέλες και ότι είχα τραυματιστεί σε εργατικό ατύχημα. Είχα σπάσει τον λαιμό μου, είχα υποστεί πλήρη παράλυση και δεν μπορούσα να αναπνεύσω μόνος μου. Διψούσα και ζήτησα λίγο νερό. Δεν μπορούσα να πιω από την κούπα με το καλαμάκι που μου έδωσαν γιατί δεν μπορούσα να καταπιώ. Δούλευα σε ένα σπίτι. Έπεσα από μια σκάλα ή έχασα την ισορροπία μου, δεν είμαι σίγουρος πλέον. Έπεσα από ύψος έξι μέτρων και προσγειώθηκα στο τσιμέντο". (Gunther, Βέλγιο) "Τραυματίστηκα (Α5-Α6) σε αυτοκινητιστικό ατύχημα όταν ήμουν 19 ετών και βρίσκομαι σε αναπηρικό αμαξίδιο τα τελευταία 30 χρόνια. Ζω στη βορειότερη πόλη στον κόσμο, στο Χάμερφεστ. Η διαβίωση στον Βορρά συνεπάγεται ορισμένες σημαντικές σωματικές προκλήσεις, με δρόμους καλυμμένους από το χιόνι έως και πέντε μήνες τον χρόνο και χαμηλές θερμοκρασίες που καθιστούν δύσκολη την εξωτερική μετακίνηση με αναπηρικό αμαξίδιο. Ήμουν ανάμεσα σε εκείνους με την μεγαλύτερη ανάγκη για βοήθεια όταν τραυματίστηκα, σε μια εποχή που η κοινότητα είχε μόλις πραγματικά ξεκινήσει να αναπτύσσει τις κατ’ οίκον υπηρεσίες της. Έκτοτε είχα το προνόμιο να συμμετέχω και να διαμορφώνω τις υπηρεσίες που συνδέονταν με τις ανάγκες μου, και τις απαιτήσεις μου για μια ζωή όσο το δυνατόν πιο φυσιολογική, ως πολίτης". (Kjell, Νορβηγία) "Τραυματίστηκα κατά την διάρκεια του σεισμού στο Σεκουάν πριν από τέσσερα χρόνια όταν ήμουν 30 ετών. Σήμερα χρησιμοποιώ αναπηρικό αμαξίδιο για την καθημερινή μου κίνηση". (Chen, China) "Είμαι 51 ετών και πάσχω από Θ6 πλήρη παραπληγία που προκλήθηκε από θρόμβωση. Όταν αρχικά παρέλυσα σοκαρίστηκα καθώς είχα λάβει λανθασμένη διάγνωση από κάποιον γιατρό το 1984. Δεν νομίζω ότι είναι εύκολο να επανέλθει κανείς σε μια φυσιολογική ανεξάρτητη διαβίωση μετά από μια αναπηρία. Στα χρόνια που ακολούθησαν μετά την διάγνωση μου, πολλά ήταν εκείνα που με βοήθησαν να αντιμετωπίσω την αναπηρία μου". (Nipapan, Ταϋλάνδη) "Στις αρχές Νοεμβρίου του 2002 έπεσα από το άλογο ενός φίλου ενώ συμμετείχα σε ιππικούς αγώνες. Πάσχω από ατελή Α6-7 με καλό έλεγχο των χεριών. Παρόλο που δεν έχω ικανότητα σύλληψης, τα χέρια μου είναι αρκετά λειτουργικά ώστε να εκτελούν μια σειρά από δεξιότητες, όπως το κράτημα ενός ποτηριού κρασιού (πολύ σημαντικό!) και να βάζω την υπογραφή μου". (Anonymous, Νέα Ζηλανδία) 12
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού Το άρθρο 31 της Σύμβασης για τα Δικαιώματα των Ατόμων με Αναπηρία (Convention on the Rights of Persons with Disabilities, CRPD) απαιτεί από τα Συμβαλλόμενα Κράτη να συλλέγουν στατιστικά δεδομένα που τους δίνουν την δυνατότητα διαμόρφωσης και εφαρμογής πολιτικών που θέτουν σε ισχύ τα δικαιώματα που απορρέουν από την Σύμβαση, έτσι ώστε τα άτομα με Κάκωση Νωτιαίου Μυελού (ΚΝΜ) και άλλες αναπηρίες, να μπορούν να συμμετέχουν πλήρως σε όλους τους τομείς της κοινωνίας, από την οικογενειακή ζωή, τη μόρφωση και την εργασία στην κοινότητα και τη χώρα. Τα έγκυρα και αξιόπιστα δεδομένα για την ΚΝΜ διαδραματίζουν σημαντικό ρόλο στη λήψη ενημερωμένων αποφάσεων για προγράμματα και πολιτικές σχεδιασμένα έτσι ώστε να προλαμβάνουν την εμφάνιση ΚΝΜ, να βελτιώνουν την ζωή των ατόμων με ΚΝΜ και να προνοούν για μελλοντικές ανάγκες υπηρεσιών για ΚΝΜ. Για να εκτιμήσει κανείς την κοινωνική και οικονομική επίδραση της ΚΝΜ, απαιτείται μια πλήρης επιδημιολογική εικόνα της ΚΝΜ, τόσο με όρους δεδομένων σε σχέση με τον συνολικό αριθμό των ανθρώπων που ζουν με ΚΝΜ (επιπολασμός), τον αριθμό νέων περιπτώσεων που εμφανίζονται (επίπτωση), και τις αιτίες της ΚΝΜ (βλέπε Πίνακα 2.1 για τους ορισμούς των δεικτών). Οι πληροφορίες αυτές πρέπει να συλλέγονται σε κανονικά διαστήματα για την διαμόρφωση προβλέψεων σχετικά με τις μελλοντικές τάσεις. Η χάραξη πολιτικής βάσει αποδεδειγμένων στοιχείων και ο προγραμματισμός σε εθνικό επίπεδο απαιτούν επίσης πληροφορίες σχετικά με τους περιβαλλοντικούς παράγοντες που επηρεάζουν την εμπειρία διαβίωσης με ΚΝΜ, την κοινωνική και οικονομική κατάσταση των ατόμων με ΚΝΜ, τις ικανοποιημένες και ικανοποιημένες ή μη ανάγκες τους, και το κόστος της ΚΝΜ. Το κεφάλαιο αυτό παρουσιάζει τις βασικές επιδημιολογικές πληροφορίες χρησιμοποιώντας δείκτες (βλέπε Πίνακα 2.1.) επιπολασμού, επίπτωσης, θνησιμότητας, αιτίων και κόστους τόσο για τραυματικές όσο και για μη τραυματικές ΚΝΜ (ΤΚΝΜ και ΜΤΚΝΜ αντίστοιχα) και συζητά τα δεδομένα της ΚΝΜ και τα αποδεικτικά στοιχεία καθώς και πως μπορούν αυτά να βελτιωθούν. Οι πληροφορίες που παρουσιάζονται αντλήθηκαν από άρθρα επιστημονικών περιοδικών που έχουν εξεταστεί από επιτροπές κρίσεως, κρατικές εκδόσεις, και από αναφορές προοπτικών και αναδρομικών μελετών με χρήση δεδομένων από μητρώα ΚΝΜ, μητρώα πληθυσμού, δεδομένα εισαγωγής και εξιτηρίου από το νοσοκομείο και δεδομένα από τις σχετικές με την υγεία έρευνες. Συγκεκριμένα για αυτή την αναφορά, διενεργήθηκαν συστηματικές ανασκοπήσεις σε εκδόσεις για την επιδημιολογία της ΚΝΜ που δημοσιεύτηκαν μεταξύ Ιανουαρίου 2000 και Αυγούστου 2012. Επίσης διενεργήθηκε μετα-ανάλυση όπου κρίθηκε αναγκαίο. Μια πληρέστερη εξήγηση σχετικά με τη μεθοδολογία που χρησιμοποιήθηκε για την εκτίμηση των δεδομένων και τους περιορισμούς αυτής, μπορεί να ανευρεθεί στα Τεχνικά Παραρτήματα A και B.
2
13
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Τι γνωρίζουμε για την Κάκωση Νωτιαίου Μυελού; Τα δεδομένα σχετικά με την έκταση και το κόστος της ΚΝΜ είναι περιορισμένα. Μόνο ορισμένες υψηλού εισοδήματος χώρες που μπορούν να μετρηθούν στα δάχτυλα του ενός χεριού, έχουν την δυνατότητα να παράσχουν εθνικά στατιστικά στοιχεία. Άλλες πηγές δεδομένων είναι τόσο λίγες και ποικίλουν τόσο πολύ μεθοδολογικά που δεν είναι δυνατόν να καταρτίσει κανείς αξιόπιστες εκτιμήσεις για τον επιπολασμό ή την επίπτωση παγκοσμίως. Τα καλύτερα διαθέσιμα δεδομένα ΚΝΜ είναι εκείνα που παρέχουν μια γενική εικόνα η οποία συνοψίζεται πιο κάτω και διερευνάται σε βάθος στο υπόλοιπο αυτού του κεφαλαίου. Η ΚΝΜ είναι μια σχετικά σπάνια αλλά πολυδάπανη πάθηση που αλλάζει τη ζωή των ασθενών, με τον κίνδυνο θνησιμότητας να ποικίλει κατά πολύ ανάλογα με την εισοδηματική κατάσταση της χώρας και να εξαρτάται σε μεγάλο βαθμό από την διαθεσιμότητα των υπηρεσιών ποιοτικής κλινικής περίθαλψης και αποκατάστασης. Είναι αδιευκρίνιστος ο αριθμός των ανθρώπων που ζουν σήμερα με ΚΝΜ, αλλά τα διεθνή στοιχεία για την επίπτωση υποδεικνύουν ότι κάθε χρόνο περίπου 250000 με 500000 άνθρωποι υφίστανται ΚΝΜ. Στην πλειοψηφία τους οι περιπτώσεις αυτές αφορούν σε τραυματική ΚΝΜ, με κυριότερες αιτίες τα τροχαία ατυχήματα, τις πτώσεις και τη βία. Πρόσφατες έρευνες έδειξαν αύξηση στην ηλικία έναρξης της ΚΝΜ και σταδιακή αύξηση στην αναλογία περιπτώσεων μη τραυματικής ΚΝΜ – που μπορούν να αποδοθούν εν μέρει στην παγκόσμια δημογραφική γήρανση. Σύγχρονα δεδομένα επίσης δείχνουν ότι η ΚΝΜ συνδέεται με αυξημένο κίνδυνο θανάτου. Τα άτομα που πάσχουν από ΚΝΜ διατρέχουν το μεγαλύτερο κίνδυνο θανάτου μέσα στον πρώτο χρόνο από την έναρξη της ΚΝΜ, αλλά ακόμα και σε υψηλού εισοδήματος χώρες όπου οι εξελίξεις στην περίθαλψη έχουν συμβάλει στην βελτίωση της επιβίωσης, εξακολου-
θούν να αντιμετωπίζουν υψηλό κίνδυνο θνησιμότητας και είναι πιθανότερο να πεθάνουν νωρίτερα από το γενικό πληθυσμό. Οι άνθρωποι με ΚΝΜ σε χαμηλού εισοδήματος χώρες συνεχίζουν να πεθαίνουν από δευτερογενείς καταστάσεις που μπορούν να προληφθούν και δεν συνιστούν πλέον πρωταρχικές αιτίες θανάτου σε υψηλού εισοδήματος χώρες. Το κόστος της ΚΝΜ ποικίλει σε μεγάλο βαθμό ανάλογα με το γενικότερο πλαίσιο και είναι διαθέσιμα λίγα συγκρίσιμα δεδομένα. Από υφιστάμενα δεδομένα γίνεται σαφές ότι η ΚΝΜ συνεπάγεται σημαντικά άμεσα και έμμεσα έξοδα, και ότι πολλά από τα έξοδα αυτά καλύπτονται από τους ασθενείς με ΚΝΜ. Το επίπεδο και η σοβαρότητα της ΚΝΜ επηρεάζουν σημαντικά το κόστος. Το άμεσο κόστος εμφανίζεται να είναι υψηλότερο κατά τον πρώτο χρόνο μετά την έναρξη της ΚΝΜ, και καθ’ όλη την διάρκεια του βίου, το έμμεσο κόστος είναι πιθανόν να υπερβεί το άμεσο κόστος. Υπάρχει επείγουσα ανάγκη βελτίωσης της ποιότητας και της ποσότητας της συλλογής δεδομένων για την ΚΝΜ. Τα θέματα με τα δεδομένα για τις ΚΝΜ και οι προτάσεις για τη βελτίωση των στοιχείων συζητούνται στο τέλος αυτού του κεφαλαίου.
Επιπολασμός της Κάκωσης Νωτιαίου Μυελού Τα δεδομένα για τις ΚΝΜ είναι σημαντικά για την καταμέτρηση της ζήτησης των υπηρεσιών υγειονομικής περίθαλψης και κοινωνικής υποστήριξης, και την εκτίμηση της επίδρασης των δευτερευόντων μέτρων πρόληψης, αλλά δυστυχώς, τα δεδομένα του επιπολασμού των ΚΝΜ είναι σποραδικά. Επί του παρόντος δεν υπάρχουν αξιόπιστες διεθνείς ή τοπικές εκτιμήσεις για την πρόληψη κάθε αιτίας ΚΝΜ. Οι εκτιμήσεις από έξι χώρες παρουσιάζονται εδώ (βλέπε Πίνακες 2.2 και 2.3). Ορισμένες εκτιμήσεις που ανευρίσκονται στη βιβλιογραφία δεν συμπεριλαμβάνονται καθώς είτε πάσχουν από μεθοδολογικά προβλήματα ή είναι σημαντικά παλαιότερες και μπορεί να μην αντικατοπτρίζουν την τρέχουσα κατάσταση.
14
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
Πίνακας 2.1. Δείκτης Επίπτωση ΚΝΜ
Παραδείγματα συνήθως χρησιμοποιούμενων εθνικών, επιδημιολογικών δεικτών για την κάκωση νωτιαίου μυελού Περιγραφή Τα δεδομένα της επίπτωσης αντικατοπτρίζουν τον αριθμό των ανθρώπων που έχουν υποστεί Κάκωση Νωτιαίου Μυελού (ΚΝΜ) σε ένα δεδομένο πληθυσμό μέσα σε ένα συγκεκριμένο χρονικό διάστημα. Γενικά αναφέρεται ως νέες περιπτώσεις ΚΝΜ ανά εκατομμύριο πληθυσμού κάθε χρόνο. Η επίπτωση συνιστά απευθείας μέτρηση του κινδύνου ΚΝΜ. Οι διαστρωματοποιημένες εκτιμήσεις των ποσοστών επίπτωσης ανά αιτιολογία, και περαιτέρω με βάση δημογραφικές (φύλο, ηλικία), επαγγελματικές ή γεωγραφικές (αστικές, αγροτικές) μεταβλητές μπορεί να διαφοροποιούν /αναγνωρίζουν τις ομάδες κινδύνου, ενημερώνοντας με τον τρόπο αυτό αποτελεσματικές πολιτικές και προγράμματα πρόληψης. Το πλήθος των ανθρώπων σε έναν πληθυσμό που πάσχουν από ΚΝΜ σε δεδομένη χρονική στιγμή. Υπολογίζεται ως αριθμός ανά εκατομμύριο πληθυσμού. Ο επιπολασμός επηρεάζεται από τον κίνδυνο και την διάρκεια μιας πάθησης και η τελευταία προσδιορίζεται από την ανάρρωση ή τον θάνατο. Η συχνή συλλογή δεδομένων, αναλυτικά σχετικά με την ηλικία, το φύλο και τις κοινωνικές-οικονομικές κατηγορίες, όπως η επαγγελματική και η περιουσιακή κατάσταση, μπορεί να αποκαλύψει σημαντικά πρότυπα και τάσεις βιωμένης εμπειρίας ΚΝΜ. Απόλυτα νούμερα υποδηλώνουν τον αριθμό των ανθρώπων που πάσχουν από κάκωση νωτιαίου μυελού ανάλογα τον μηχανισμό, πρόθεση, τόπο και δραστηριότητα. Η SMR δίνει μια τυποποιημένη εκτίμηση της θνησιμότητας σε ανθρώπους με ΚΝΜ αναφορικά με τον γενικό πληθυσμό. Όταν η SMR ισούται με 1.0, τότε δεν υπάρχει αυξημένος κίνδυνος θανάτου για άτομα με ΚΝΜ, αν ξεπερνά το 1.0 τότε υπάρχει. Προϋποθέσεις υπολογισμού της SMR σε μια ομάδα είναι: - Ο αριθμός των ατόμων με ΚΝΜ βάσει ηλικιακής ομάδας και φύλου, - Καταγεγραμμένη θάνατοι σε άτομα με ΚΝΜ - Τα ποσοστά θνησιμότητας σε συγκεκριμένες ηλικιακές ομάδες και φύλα στο γενικό πληθυσμό. Τα απόλυτα νούμερα του αριθμού των ανθρώπων που πέθαναν μετά από ΚΝΜ. Σε περίπτωση καταγραφής ανά αιτιολογία, αντίστοιχες απαντήσεις μπορούν να αναγνωριστούν και να εφαρμοστούν.
Χρήση και Περιορισμών Διακυμάνσεις εμφανίζονται σε σχέση με: - το σωστό ορισμό του πληθυσμού υψηλού κινδύνου (π.χ. πληθυσμός-πηγή για περιστατικά ΚΝΜ) - τον ορισμό των περιπτώσεων ΚΝΜ - την ολοκλήρωση της εξακρίβωσης των περιστατικών, δηλαδή ο βαθμός στον οποίο συμπεριλαμβάνονται όλα τα περιστατικά ΚΝΜ όπως προσδιορίζεται από τον ορισμό των περιστατικών. Για παράδειγμα, η επίπτωση ΤΚΝΜ μπορεί να μην περιλαμβάνει τα άτομα με ΚΝΜ που έχασαν την ζωή τους στον τόπο του ατυχήματος, η ΜΤΚΝΜ μπορεί να μη συμπεριλαμβάνει άτομα που πάσχουν από ΚΝΜ σε τελικού σταδίου νόσους (π.χ. μετάσταση στο νωτιαίο μυελό). Ο επιπολασμός συνιστά δείκτη της αποτελεσματικότητας της δευτερογενούς πρόληψης και της ανάγκης για φροντίδα και κοινωνική υποστήριξη
Επιπολασμός
Αιτιολογία
Χρήσιμη για τον σχεδιασμό της πρωτογενούς πρόληψης σε τοπικό επίπεδο, την περίθαλψη τραυματιών και τις υπηρεσίες αποκατάστασης. Χρήσιμη για τον υπολογισμό του κόστους της υγειονομικής περίθαλψης. Προσδιορίζει την υψηλότερη ή χαμηλότερη θνησιμότητα των ατόμων με ΚΝΜ σε σχέση με το γενικό πληθυσμό. Περιορισμός: Η διακύμανση στις εκτιμήσεις SMR ανάμεσα στους πληθυσμούς μπορεί εν μέρει να αντικατοπτρίζει τη διακύμανση στη θνησιμότητα του γενικού πληθυσμού και την ολοκληρωμένη εξακρίβωση της θνησιμότητας.
Τυποποιημένη Αναλογία Θνησιμότητας (Standardized Mortality Ratio, SMR)
Ποσοστά Περιστατικών Θνησιμότητας
Απεικονίζει τη σχέση ανάμεσα στην ΚΝΜ και τη θνητότητα. Για λόγους σύγκρισης, οι πληροφορίες πρέπει να τυποποιούνται στις ακόλουθες ομάδες: αριθμός ατόμων με ΚΝΜ, συμπεριλαμβανομένων εκείνων με ΤΚΝΜ που πεθαίνουν στον τόπο του τραυματισμού, τους θανάτους στα νοσοκομεία, και τους θανάτους μετά την έξοδο από το νοσοκομείο: 30 ημέρες, 1 χρόνος, 5 χρόνια, κλπ.
15
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Πίνακας 2.2. Χώρα
Επιπολασμός ΤΚΝΜ Τοποθεσία Έτος Εκτίμησης Σχεδιασμός μελέτης & πληθυσμός αναφοράς προοπτική, διατομεακή, εθνικό μητρώο
Παιδιατρική/ Ενήλικη ΚΝΜ
Επιπολασμός ανά εκατομμύριο πληθυσμού 440
Ι.Δ. Ιράν Δημοκρατία Δημοκρατία του Ιράν Φινλανδία
Τεχεράνη
2008
Ενηλίκων, Παιδιατρική
Κέντρο Αποκατάστασης Käpylä, Ελσίνκι, Κεντρικό Πανεπιστημιακό Νοσοκομείο Ελσίνκι, Ελσίνκι Κοινοπολιτείες Hordaland και SognoogFjordane Πανεπιστημιακό Νοσοκομείο Landspitali, Reykjavik Πανεθνικά Πανεθνικά
1999
Αναδρομική, μητρώο νοσοκομειακών δεδομένων
Ενηλίκων, Παιδιατρική
280
Νορβηγία
2002
Αναδρομική, διαχρονική/γενεαλογική, διαγενεακή ανάλυση με χρήση νοσοκομειακών δεδομένων Αναδρομική, διαχρονική/γενεαλογική, διαγενεακή ανάλυση με χρήση νοσοκομειακών δεδομένων Αναδρομική, διεπιστημονική, εθνικό μητρώο, μελέτη μοντελοποίησης Αναδρομική, εθνικό μητρώο, μελέτη μοντελοποίησης
Ενηλίκων, Παιδιατρική Ενηλίκων, Παιδιατρική Ενηλίκων, Παιδιατρική Ενηλίκων
365
Ισλανδία
2009
526
Καναδάς Αυστραλία
2010 1997
1298 681
Πηγές (1-6). Πίνακας 2.3. Χώρα Επιπολασμός ΜΤΚΝΜ Τοποθεσία Έτος Σχεδιασμός μελέτης & πληθυσμός Παιδιατρική/ Ενήλικη ΚΝΜ Επιπολασμός ανά εκατομμύριο πληθυσμού 1227 367 (455 για ενήλικες από 16 ετών και άνω)
Καναδάς Αυστραλία
Πανεθνικά Πολιτεία της Βικτώρια
2010 2010
Αναδρομική, διεπιστημονική, εθνικό μητρώο Αναδρομική, διεπιστημονική, εθνικό μητρώο
Ενηλίκων, παιδιατρική Ενηλίκων, παιδιατρική
Πηγές (1, 7).
Τα δεδομένα του Καναδά δίνουν συνολικό ποσοστό επιπολασμού ΚΝΜ (σε συνδυασμό τραυματικής και μη τραυματικής) 2525 ανά εκατομμύριο πληθυσμού, ή 85.000 ανθρώπους, το 2010. Οι εκτιμήσεις για τον επιπολασμό της ΚΝΜ σε συγκεκριμένες ηλικιακές ομάδες στον Καναδά δείχνουν ότι η ΤΚΝΜ παρουσιά16
ζει συγκέντρωση σε νεαρότερες πληθυσμιακές ομάδες ενώ η ΜΤΚΝΜ σε μεγαλύτερες ηλικιακές ομάδες (βλέπε Σχήμα 2). Τα νούμερα που αφορούν στον επιπολασμό ΤΚΝΜ (βλέπε Πίνακα 2.2) κυμαίνονται από 280 ανά εκατομμύριο πληθυσμού στη Φινλανδία (5) έως 1298 ανά
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
εκατομμύριο πληθυσμού στον Καναδά (1), παρόλο που η διακύμανση αυτή οφείλεται πιθανότατα σε διαφορές στην μεθοδολογία παρά σε πραγματική πενταπλάσια διαφορά στον επιπολασμό. Οι εκτιμήσεις για τον επιπολασμό στην Αυστραλία και στον Καναδά αντλήθηκαν από μια τεχνική μοντελοποίησης που ενσωματώνει τα δεδομένα της επίπτωσης και πληροφορίες για την διάρκεια της ασθένειας. Τα υψηλότερα ποσοστά στον Καναδά μπορεί να είναι ενδεικτικά μιας Βόρειο-Αμερικανικής τάσης ή μπορεί να οφείλονται στο γεγονός ότι οι τρέχουσες παραδοχές καλύτερων αποδεικτικών στοιχείων που χρησιμοποιήθηκαν στον Σχήμα 2.1.
Καναδά οδηγούν σε υπερεκτίμηση της επίπτωσης ενώ εκείνες που χρησιμοποιήθηκαν στην Αυστραλία υποτιμούν τα ποσοστά επίπτωσης. Οι άλλες χώρες παρουσιάζουν διαθέσιμα δεδομένα από νοσοκομειακά και εθνικά μητρώα και διατομεακές μελέτες σε βάθος χρόνου. Για να κατανοήσουμε καλύτερα τις εκτιμήσεις επιπολασμού μεταξύ αυτών των χωρών, απαιτούνται περισσότερα δεδομένα αναφορικά με τις δημογραφικές διαφορές, καθώς και τόσο τα ποσοστά επίπτωσης από συγκεκριμένες αιτίες ανά ηλικία και φύλο όσο και τα συνδεόμενα με αυτά προσδόκιμα ζωής, πληροφορίες που δεν είναι επί του παρόντος διαθέσιμες.
Εκτιμήσεις επιπολασμού ΚΝΜ ανάλογα με την ηλικία για το 2010 στον Καναδά
Διαθέσιμα δεδομένα για τον επιπολασμό της ΜΤΚΝΜ (βλέπε Πίνακα 2.3) υπάρχουν μόνο για την Αυστραλία (367 ανά εκατομμύριο πληθυσμού) και για τον Καναδά (1227 ανά εκατομμύριο πληθυσμού) (1, 7). Τα δεδομένα για την Αυστραλία αντλήθηκαν από μελέτη στην πολιτεία της Βικτώρια, βάσει του προσδόκιμου ζωής και δεδομένων για τα αποτελέσματα της αποκατάστασης σε εθνικό επίπεδο, και συμπεραίνονται για την υπόλοιπη χώρα (7). Τα αποτελέσματα δείχνουν μέγεθος επιπολασμού 455 ανά εκατομμύριο πληθυσμού για ενήλικες 16 ετών και πάνω, υποδηλώνοντας ότι η γήρανση του πληθυσμού μπορεί να αποτελεί τον πρωταρχικό παράγοντα αύξησης του επιπολασμού της ΜΤΚΝΜ. Οι υψηλότερες εκτιμήσεις σχετικά με τον επιπολασμό στον Καναδά μπορεί να συνιστούν αποτέλεσμα των παραδοχών που έγιναν στην μελέτη εν αντιθέσει με
την πραγματική διαφορά στον επιπολασμό.
Συχνότητα (συχνότητα εμφάνισης) της Κάκωσης Νωτιαίου Μυελού Η εκτίμηση της παγκόσμιας επίπτωσης της ΚΝΜ κυμαίνεται ανάμεσα σε 40 με 80 νέες περιπτώσεις ανά εκατομμύριο πληθυσμού κάθε χρόνο, βάσει ποιοτικών ερευνών για την επίπτωση της ΚΝΜ από κάθε αιτία σε επίπεδο χώρας. Αυτό σημαίνει, ότι κάθε χρόνο 250000 με 500000 άνθρωποι παρουσιάζουν κάκωση νωτιαίου μυελού. Οι μελέτες που αναφέρουν τα δεδομένα της επίπτωσης των αιτιών τραυματικής και μη τραυματικής ΚΝΜ παρέχουν πληροφορίες σχετικά με την συνολική σύνθεση των πληθυσμών με ΚΝΜ. Η συλλογή των 17
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
πληροφοριών αυτών είναι σημαντική καθώς οι ανάγκες για πόρους και τα χαρακτηριστικά των πληθυσμών τραυματικής και μη-τραυματικής ΚΝΜ είναι διαφορετικά. Η αναλογία τραυματικής ΚΝΜ παρουσιάζει μεγάλο εύρος διακυμάνσεων και μοιάζει να διαφοροποιείται τοπικά (8-11). Ιστορικά, έως και το 90% των ΚΝΜ είναι τραυματικής προέλευσης, αλλά δεδομένα από πιο πρόσφατες έρευνες δείχνουν μια ελαφρά αυξητική τάση των ΜΤΚΝΜ τα τελευταία χρόνια (12). Ο πληθυσμός με ΜΤΚΝΜ είναι γενικότερα μεγαλύτερος σε ηλικία, με χρονιότερες ασθένειες που απαιτούν πιο δαπανηρή περίθαλψη, αν και για μικρότερο χρονικό διάστημα. Οι περισσότερες έρευνες για την επίπτωση της ΚΝΜ καλύπτουν είτε την ΤΚΝΜ ή τη ΜΤΚΝΜ, ίσως εξαιτίας των διαφορών στις πηγές δεδομένων και στις μεθόδους συλλογής δεδομένων. Η επίπτωση και η αιτιολογία της ΤΚΝΜ και της ΜΤΚΝΜ εξετάζονται ως εκ τούτου ξεχωριστά παρακάτω. Τα δεδομένα για τη ΜΤΚΝΜ είναι περιορισμένα σε σύγκριση με εκείνα για την ΤΚΝΜ.
Σχήμα 2.2
Παγκόσμια διαφοροποίηση στην εκτίμηση της ετήσιας συχνότητας εμφάνισης (επίπτωσης) των ΤΚΝΜ σε επίπεδο χώρας
Eτήσια συχνότητα εμφάνισης (crude annual incidence) ανά εκατομμύριο πληθυσμού
Τραυματική Κάκωση Νωτιαίου Μυελού Επίπτωση (συχνότητα εμφάνισης) Λαμβάνοντας υπόψη τα διαθέσιμα δεδομένα, δεν είναι δυνατόν να συναχθούν ουσιαστικές περιφερειακές εκτιμήσεις για την επίπτωση των ΤΚΝΜ. Η στατιστική μοντελοποίηση αποκλείεται λόγω έλλειψης αξιόπιστων προγνωστικών δεικτών. Τα ποσοστά επίπτωσης των ΤΚΝΜ σε επίπεδο χώρας παρουσιάζουν ευρεία διακύμανση ανά τον κόσμο - από 13 έως 53 περιπτώσεις ανά εκατομμύριο πληθυσμού, όπως φαίνεται στην Σχήμα 2.2. Τα ποσοστά επίπτωσης της ΤΚΝΜ τείνουν να είναι υψηλότερα στη Βόρεια Αμερική από ότι στην Ευρώπη, πιθανότατα λόγω των υψηλότερων ποσοστών βίας στις ΗΠΑ. Δεδομένα για την επίπτωση από άλλες περιοχές είτε δεν υπάρχουν είτε παρουσιάζουν υπερβολικά μεγάλη διακύμανση ανάμεσα και εντός των χωρών που είναι δύσκολο να παράσχουν αξιόπιστα συνοπτικά στατιστικά στοιχεία. Για παράδειγμα, τα δεδομένα από την περιοχή του Πεκίνου στην Κίνα δείχνουν ύψος επίπτωσης 60.6 ανά εκατομμύριο (21), ενώ στην περιοχή της Tianjin αναφέρεται επίπτωση ύψους 23.7 ανά εκατομμύριο (22). 18
Οι σημαντικές διαφοροποιήσεις στην επίπτωση της ΤΚΝΜ σε επίπεδο χώρας οφείλονται σε διάφορους παράγοντες: ■ Αυθεντικές διαφορές στην επίπτωση σε επίπεδο χώρας που συνδέονται με διαφοροποιήσεις στον κίνδυνο. ■ Διαφορές που μπορούν να αποδοθούν σε μεθοδολογικές προσεγγίσεις. ■ Πληθυσμός (ενήλικες, παιδιά ή και τα δύο) υπό έρευνα. Η ΤΚΝΜ στα παιδιά είναι χαμηλή. Οι μελέτες που αφορούν μόνο στην επίπτωση στον ενήλικο πληθυσμό υπερεκτιμούν το συνολικό ποσοστό του πληθυσμού και καθιστούν δύσκολη την σύγκριση με τις μελέτες να αναφέρουν συγχωνευμένα δεδομένα για την επίπτωση σε ενήλικες και παιδιά. ■ Αντιπροσωπευτικότητα των δεδομένων. Με εξαίρεση ορισμένες χώρες που διαθέτουν σύστημα μητρώου ΚΝΜ σε όλη τη χώρα, όπως η Φινλανδία, οι εκτιμήσεις για την επίπτωση εξάγονται από τα δεδομένα για μια πόλη ή από τοπικά δεδομένα, που μπορεί να μην είναι αντιπροσωπευτικά για ολόκληρη τη χώρα. Παρά τις διακυμάνσεις αυτές, εμφανίζονται ορισμένες τάσεις από τα δεδομένα για την επίπτωση της
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
ΤΚΝΜ σε επίπεδο χώρας: 1. Η επίπτωση της ΤΚΝΜ παρουσιάζει ύφεση σε ορισμένες χώρες, αλλά παραμένει σταθερή ή εμφανίζει ανοδική πορεία σε άλλες. Σε έρευνες στις ΗΠΑ, τη Φινλανδία και την Αυστραλία επισημαίνεται η μείωση της επίπτωσης της ΤΚΝΜ που οφείλεται σε τροχαία ατυχήματα. Το αποτέλεσμα αυτό, ωστόσο, δεν είναι ενδεικτικό σε όλες τις αναπτυγμένες χώρες. Τα δεδομένα από δυο Νορβηγικές κομητείες έδειξαν σταθερή αύξηση της επίπτωσης της TSCI ανά δεκαετία ανάμεσα στο 1952 και στο 2001, από 9.9 σε 34.5 ανά εκατομμύριο στους άνδρες και από 1.9 σε 8.2 ανά εκατομμύριο στις γυναίκες (3). Παρόλο που η Γαλλία παρουσιάζει αξιοσημείωτη μείωση στην επίπτωση των θανατηφόρων τροχαίων ατυχημάτων, η επίπτωση της ΚΝΜ έχει παραμείνει σταθερή (23). Αυτό αντικατοπτρίζει μια αλλαγή οπτικής, με την επίπτωση της ΚΝΜ για τους οδηγούς αυτοκινήτων να σημειώνει πτώση αλλά την επίπτωση της ΚΝΜ για τους μοτοσικλετιστές, τους πεζούς και τους ποδηλάτες να αυξάνεται. 2. Σημειώνονται σημαντικά υψηλότερα ποσοστά επίπτωσης στην ΤΚΝΜ των ενηλίκων στους άνδρες. Ενώ οι παιδιατρικές έρευνες αναφέρουν συνήθως ίση αναλογία ανάμεσα σε άνδρες και γυναίκες (24, 25), οι έρευνες στους ενήλικες δείχνουν μια κατ’ελάχιστον αναλογία ανδρών προς τις γυναίκες 2:1, και με ορισμένες να αναφέρουν ακόμα υψηλότερα ποσοστά. Για παράδειγμα, υπερβολικά υψηλές αναλογίες ανδρών προς γυναίκες έχουν καταγραφεί στη Θεσσαλονίκη, περιοχή της Ελλάδας (7.3:1) (26), στην Ιρλανδία (6.7:1) (18), στο Κατάρ (8.3:1) (19), και στη Στοκχόλμη, στη Σουηδία (3.3:1) (26). Τα δεδομένα για την επίπτωση της ΤΚΝΜ στις ΗΠΑ δείχνουν ότι οι άνδρες παρουσιάζουν υψηλότερα ποσοστά ΤΚΝΜ σε όλες τις ηλικιακές ομάδες, με αποκορύφωμα τις ηλικίες από 16 έως 21, με 82% των περιπτώσεων ΤΚΝΜ σε αυτή την ηλικιακή ομάδα να εμφανίζεται στους άνδρες (βλέπε Σχήμα 2.3). Τα αποτελέσματα αυτά υποστηρίζουν την άποψη ότι η επίπτωση της ΚΝΜ συνιστά εν μέρει μια λειτουργία του ρόλου των δυο φύλων – κατανάλωση αλκοόλ, οδική συμπεριφορά και συμμετοχή σε αθλήματα υψηλού κινδύνου – που εκδηλώνεται μετά την παιδική ηλικία (13, 29-31). 3. Η ΤΚΝΜ είναι πιθανόν να εμφανιστεί σε ενήλικες νεαρής ηλικίας και σε ηλικιωμένους. Τα ποσο-
Σχήμα 2.3.
Κατανομή της ΚΝΜ ανάλογα με το φύλο και την ηλικιακή ομάδα
(Πηγές 27, 28) Σχήμα 2.4. Ποσοστά επίπτωσης ΤΚΝΜ εξαρτώμενης από την ηλικία και το φύλο στον Καναδά
Πηγή (1)
στά επίπτωσης της ΤΚΝΜ κορυφώνονται σε δυο ηλικιακές ομάδες- στους ενήλικες νεαρής ηλικίας (άνδρες: 20-29 ετών, γυναίκες: 15-19 ετών) και ανθρώπους μεγαλύτερης ηλικίας (άνδρες 70+, γυναίκες 60+), βλέπε τα παραδείγματα των ποσοστών επίπτωσης της ΤΚΝΜ σε συγκεκριμένες ηλικιακές ομάδες και φύλα για τον Καναδά στην Σχήμα 2.4 (1). Η αυξημένη επίπτωση μετά από την ηλικία των 65 19
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
ετών αποτελεί ένα πρότυπο που παρατηρείται τελευταία. Έρευνα στον Καναδά έδειξε επίπτωση 51.4 ανά εκατομμύριο για άτομα άνω των 60 (32), που υποστηρίζεται από έρευνες στην Κίνα και την Αυστραλία (16, 33). Στην Αυστραλία τα τελευταία 25 χρόνια η αναλογία της ΚΝΜ ανάμεσα σε ανθρώπους 65 ετών και μεγαλύτερους. Έχει αυξηθεί από 4% έως 12% (34). Τα ευρήματα αυτά αντικατοπτρίζουν την υψηλότερη επίπτωση των πτώσεων ανάμεσα στους ηλικιωμένους (βλέπε Σχήμα 2.4 και Σχήμα 2.7). Τα ποσοστά επίπτωσης της παιδιατρικής ΤΚΝΜ είναι χαμηλά (π.χ. 4-8 ανά εκατομμύριο) στις περισσότερες χώρες για τις οποίες υπάρχουν εκτιμήσεις (24, 25, 36), με αξιοσημείωτη εξαίρεση τις ΗΠΑ, όπου μια μόνο έρευνα αναφέρει επίπτωση παιδιατρικής ΤΚΝΜ περίπου 20 ανά εκατομμύριο (37). Οι έρευνες δείχνουν συνήθως ενδιάμεσα ποσοστά επίπτωσης για τους ενήλικες και τους μεσήλικες (1-3). Υπάρχουν ορισμένα στοιχεία σύμφωνα με τα οποία παρουσιάζεται αύξηση της ηλικίας κατά τη στιγμή της κάκωσης. Στη Νορβηγία, για παράδειγμα, η μέση ηλικία ΤΚΝΜ παρουσίασε αύξηση από 40.2 σε 48.9 έτη ανάμεσα στο 1952 και στο 2001, με την μεγαλύτερη μεταβολή της μέσης ηλικίας κατά την στιγμή του τραυματισμού να παρατηρείται στις γυναίκες – από τα 24.7 χρόνια στα 57.7 χρόνια (3). Σχήμα 2.5.
Αιτιολογία Βάσει των διαθέσιμων στοιχείων για την αιτιολογία της ΤΚΝΜ για τις περιοχές της Παγκόσμιας Οργάνωσης Υγείας (WHO), οι τρείς συνηθέστερες αιτίες είναι η μετακίνηση (και συγκεκριμένα τροχαία ατυχήματα από σύγκρουση), οι πτώσεις και η βία (βλέπε Σχήμα 2.5). Ενώ οι συνολικές εκτιμήσεις στην Σχήμα 2.5 απεικονίζουν τοπικές διαφορές, μπορεί να μην απεικονίζουν επαρκώς τις διακυμάνσεις στις αιτίες σε επίπεδο χώρας ή το πλαίσιο του τραυματισμού. Τα τροχαία συνιστούν την κύρια αιτία ΤΚΝΜ. Στην Αφρική, οι μετακινήσεις ευθύνονται για περίπου 70% των περιπτώσεων. Στις υπόλοιπες χώρες της ΠΟΥ, η μετακίνηση κυμαίνεται σε ποσοστό όλων των αιτιών, από 40% στην Περιοχή της Νότιας Ανατολικής Ασίας σε 55% στην Περιοχή του Δυτικού Ειρηνικού. Μια έρευνα στο Μισισιπή, των ΗΠΑ έδειξε ότι οι ζώνες ασφαλείας δεν ήταν διαθέσιμες ή δεν χρησιμοποιούνταν τουλάχιστον σε ποσοστό 75% των αυτοκινητιστικών συγκρούσεων που οδηγούσαν σε ΚΝΜ (31). Παρομοίως, έρευνα για την ΚΝΜ στη Νιγηρία ανέφερε ότι κανένας από τους 63 τραυματισμένους σε τροχαία ασθενείς που είχαν καταγραφεί δεν χρησιμοποιούσε ζώνη ασφαλείας (38), γεγονός που απεικονίζει τη σημασία της χρήσης της ζώνης ασφαλείας για την μείωση της ΚΝΜ ανάμεσα στους επιβάτες οχημάτων
Κατανομή των ΤΚΝΜ στις διαφορετικές περιφέρειες της ΠΟΥ
Σημείωση: οι αριθμοί των χωρών που προσφέρουν δεδομένα για ανακεφαλαίωση σε επίπεδο περιφέρειας έχουν ως εξής: Αφρική 3 χώρες, Αμερική 4, Ανατολική Μεσόγειος 5, Ευρώπη 13, Νοτιο-Ανατολική Ασία 3, και Δυτικός Ειρηνικός 3 χώρες. Πηγές: Αφρική – (38-45), Αμερική – (12,30,32,35,46-52) Ανατολική Μεσόγειος – (4, 53-56), Ευρώπη – (2,3,9,13,17,18,20,26,5767), Νοτιο-ανατολική Ασία – (68-72), Δυτικός Ειρηνικός – (16,21,22,34,73-80).
20
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
Σχήμα 2.6.
Αιτιολογία της ΚΝΜ κατά ηλικιακή ομάδα (σε νέα άτομα)
Πηγή (27,28)
(βλέπε Κεφάλαιο 3 για περισσότερες λεπτομέρειες). Οι πτώσεις συνιστούν τη δεύτερη κύρια αιτία ΤΚΝΜ. Οι πτώσεις ευθύνονται για μόλις πάνω από το 40% όλων των αιτιών στις περιοχές της Ανατολικής Μεσογείου και της Νότιας Ανατολικής Ασίας. Για παράδειγμα στο Νεπάλ μία έρευνα ανέφερε ότι το 40% των σπονδυλικών κακώσεων οφειλόταν σε πτώσεις από δέντρα κατά την κοπή φύλλων για νομή και το 28% οφειλόταν σε πτώσεις από κτίρια (81). Στην Αφρική αναφέρεται το χαμηλότερο ποσοστό (14%) πτώσεων, με τις υπόλοιπες χώρες της ΠΟΥ να εμφανίζουν ποσοστά ανάμεσα στο 27% και στο 36%. Η βία, συμπεριλαμβανομένου του αυτοτραυματισμού, αποτελεί την τρίτη πιο συνήθη αιτία ΤΚΝΜ. Η σχετική αναλογία βίας ως αιτία της ΤΚΝΜ ποικίλει σημαντικά, με τις περιοχές της Αμερικής, της Αφρικής και της Ανατολικής Μεσογείου να εμφανίζουν τα υψηλότερα ποσοστά της τάξης του 14%, 12% και 11%, αντίστοιχα. Ορισμένα δεδομένα από συγκεκριμένες χώρες – ιδίως από χώρες που έχουν πληγεί από πόλεμο –απεικονίζουν πολύ υψηλότερα ποσοστά, όπως το Αφγανιστάν, που εμφανίζει ποσοστό της τάξης του 60% όλων των αιτίων ΤΚΝΜ που σχετίζονται με τη βία (56). Το ποσοστό των περιπτώσεων ΤΚΝΜ που συνδέεται με τη βία είναι επίσης υψηλό στη Βραζιλία 42% (10), στην Τουρκία 25% (64), και στη Νότια Αφρική 21% (44). Στις ΗΠΑ, 11.7% των περιπτώσεων ΚΝΜ οφείλονται σε πυροβόλα όπλα (82), με ποσοστά έως και 28% ανάμεσα σε ορισμένες ηλικιακές και εθνικές
ομάδες από (27). Ο Δυτικοευρωπαϊκός μέσος όρος κυμαίνεται γύρω στο 4% (59), και ορισμένες χώρες όπως η Νορβηγία, ο Καναδάς και η Αυστραλία αναφέρουν ένα μέσο όρο λιγότερο του 2% (3, 16, 30). Τέλος, η απόπειρα αυτοκτονίας εμφανίζεται σε ποσοστό πάνω από 10% των περιπτώσεων ΤΚΝΜ στο Ισραήλ και τη Φινλανδία (5, 8). Σε όλες τις περιοχές, οι αθλητικές και ψυχαγωγικές δραστηριότητες εμφανίζουν ποσοστό μικρότερο του 10% όλων των περιπτώσεων ΤΚΝΜ, με την περιοχή της Αμερικής να αναφέρει το υψηλότερο ποσοστό οφειλόμενης σε αθλητικές δραστηριότητες ΤΚΝΜ (8%). Παρ’ όλα αυτά, σε ορισμένες περιπτώσεις τα δεδομένα από συγκεκριμένες χώρες εμφανίζουν υψηλότερα ποσοστά, όπως 28% στις ΗΠΑ (27), 25% στη Δημοκρατία της Κορέας (83) και 22% στη Γαλλία (84), ή χαμηλότερα ποσοστά, όπως στη Νιγηρία όπου τα αθλήματα ευθύνονται μόνο για το 1.7% όλων των περιπτώσεων ΤΚΝΜ (43). Οι αιτίες ΤΚΝΜ μπορεί να συνδέονται επίσης με δραστηριότητες, χώρους και συνθήκες. Τα εργατικά ατυχήματα ευθύνονται σε ποσοστό τουλάχιστον 15% όλων των περιπτώσεων ΤΚΝΜ (2, 8, 16, 18, 26, 60, 85). Η χρήση ναρκωτικών ή αλκοόλ έχει αναγνωριστεί ως παράγοντας πρόκλησης ΤΚΝΜ σε ποσοστό 34% όλων των περιπτώσεων στη Βρετανική Κολομβία, τον Καναδά (30) και σε ποσοστό 34% όλων των τραυματισμών που συνδέονται με μετακινήσεις στο Μισισιπή, ΗΠΑ (31). 21
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Σχήμα 2.7.
Αιτολογία των ΚΝΜ κατά ηλικιακή ομάδα (ομάδες όλων των ηλικιών)
Πηγές (35)
Δημογραφικές Τάσεις Η ηλικία και το φύλο επηρεάζουν την αιτιολογία της ΤΚΝΜ καθ’ όλη τη διάρκεια του κύκλου ζωής. Απεικονίζοντας τα δεδομένα που αντλήθηκαν σχετικά με την ΚΝΜ σε παιδιά και νεαρούς ενήλικες στις ΗΠΑ (βλέπε Σχήμα 2.6) – δεδομένα που υποστηρίζονται βιβλιογραφικά από άλλες χώρες – οι ιατρικές και χειρουργικές αιτίες ΚΝΜ κυριαρχούν περισσότερο στις ηλικίες κάτω του ενός έτους. Ανάμεσα στη γέννηση και τα πέντε έτη, οι αυτοκινητιστικές συγκρούσεις με τετράτροχα οχήματα ευθύνονται έως και για το 65% όλων των ΤΚΝΜ (28). Η μετακίνηση (δηλ. τα τροχαία) παραμένει η συνηθέστερη αιτία ΤΚΝΜ ανάμεσα σε παιδιά και νεαρούς ενήλικες, ευθυνόμενη για το υψηλότερο ποσοστό ΚΝΜ στα κορίτσια σε σύγκριση με τα αγόρια. Η βία μοιάζει να προκαλεί περισσότερες ΚΝΜ ανάμεσα στους άνδρες όλων των ηλικιακών ομάδων, παρόλο που οι διαφορές αυτές είναι στατιστικά σημαντικές μόνο στις ηλικίες άνω των 5 ετών. Τα αθλήματα προκαλούν περισσότερες ΤΚΝΜ στα αγόρια παρά στα κορίτσια μετά την ηλικία των 13 ετών. Οι τάσεις αυτές αντανακλούνται σε δεδομένα από άλλες χώρες με μόνο δυο εξαιρέσεις. Δυο έρευνες σε παιδιά με μέση ηλικία τα εννέα χρόνια έδειξε υψηλότερα ποσοστά βίας και επιθετικότητας στη Βραζιλία και υψηλότερα ποσοστά πτώσεων στο Ηνωμένο Βασίλειο (10, 86). 22
Ενώ η μετακίνηση παραμένει σημαντική αιτία ΚΝΜ σε όλες τις ηλικιακές ομάδες, οι πτώσεις συνιστούν την πιο συνήθη αιτία μετά την ηλικία των 60, όπως φαίνεται στην Σχήμα 2.7 στα δεδομένα από τις ΗΠΑ που αντλήθηκαν από την Ετήσια Στατιστική Αναφορά για το 2011 του Εθνικού Στατιστικού Κέντρου Κάκωσης Νωτιαίου Μυελού (National Spinal Cord Injury Statistical Center, NSCISC) (35). Μια έρευνα από την Κίνα, που επικεντρωνόταν συγκεκριμένα στο ύψος των πτώσεων, βρήκε ότι οι πτώσεις από ύψος εμφανίζονταν συχνότερα σε άτομα από 15 έως 44 ετών και ότι οι χαμηλές πτώσεις (από λιγότερο του ενός μέτρου) εντοπίζονταν συχνότερα σε άτομα άνω των 45 (80), όπως φαίνεται στην Σχήμα 2.8.
Μη Τραυματική Κάκωση Νωτιαίου Μυελού Επίπτωση Υπάρχουν πολύ λιγότερες μελέτες για την επίπτωση της ΜΤΚΝΜ σε σχέση με την επίπτωση της ΤΚΝΜ, με εξαίρεση συγκεκριμένες μελέτες για την δισχιδή ράχη (βλέπε Πλαίσιο 2.1). Τα παγκόσμια και τοπικά ποσοστά επίπτωσης δεν μπορούν να υπολογιστούν διότι οι υπάρχουσες έρευνες δεν είναι αντιπροσωπευτικές ή συγκρίσιμες, λόγω μεθοδολογικών προβλημάτων όπως τα διαφορετικά κριτήρια επιλογής/
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
αποκλεισμού, η ατελής ταυτοποίηση περιστατικών, ή ελλείψεις στην αναφορά πληθυσμού υψηλού κινδύνου (87). Το ποσοστό επίπτωσης ΜΤΚΝΜ στον Καναδά υπολογίζεται γύρω στα 68 ανά εκατομμύριο (1). Αυστραλιανές εκτιμήσεις, με χρήση δεδομένων από την πολιτεία της Βικτώρια, αναφέρουν επίπτωση 26 ανά εκατομμύριο (87-89). Δεδομένα από νοσοκομείο με εξειδικευμένη μονάδα ΚΝΜ στην Ισπανία (90) αναφέρει 11.4 ανά εκατομμύριο. Η επίπτωση ΜΤΚΝΜ διαφοροποιείται ανάλογα με την ηλικία και το φύλο. Όπως και η ΤΚΝΜ, το ποσοστό επίπτωσης της ΜΤΚΝΜ είναι υψηλότερο ανάμεσα στους άνδρες από ότι στις γυναίκες. Σε αντίθεση με την ΤΚΝΜ, η επίπτωση της ΜΤΚΝΜ αυξάνεται σταθερά με την ηλικία (βλέπε Σχήμα 2.9 για παράδειγμα), με τον κίνδυνο πιθανόν να επηρεάζεται από την αδύναμη υγεία με την αύξηση της ηλικίας. Λόγω του ότι η ΜΤΚΝΜ είναι συχνότερη σε μεγαλύτερες ηλικιακές ομάδες (89), και δεδομένης της παγκόσμιας γήρανσης, η επίπτωση της ΜΤΚΝΜ θα αυξηθεί και ενδέχεται να ξεπεράσει εκείνη της τραυματικής ΚΝΜ μέσα στις επόμενες δεκαετίες (7).
Σχήμα 2.8.
Κατανομή της αιτιολογίας ανάλογα με την ηλικιακή ομάδα στην Κίνα
Πηγές: αναπαραγωγή από (80) με την άδεια των εκδόσεων Maney Σχήμα 2.9. Ποσοστά επίπτωσης ΜΤΚΝΜ συνδεόμενη με την ηλικία και το φύλο στην Αυστραλία
Αιτιολογία Υπάρχουν λίγα αξιόπιστα εθνικά δεδομένα αναφορικά με την αιτιολογία της ΜTΚΝΜ, αλλά έρευνες υποδηλώνουν ότι οι κύριες αιτίες είναι οι νεοπλασματικοί όγκοι και οι εκφυλιστικές παθήσεις της σπονδυλικής στήλης, ακολουθούμενες από αγγειακές και αυτοάνοσες διαταραχές (11, 59, 62, 122-124). Σε χώρες όπως η Ινδία, το Περού και η Σουηδία, όπου συναντώνται υψηλά επίπεδα φυματίωσης και άλλων μολυσματικών ασθενειών, αυτές κυριαρχούν στις αιτίες πρόκλησης ΜΤΚΝΜ εκτός από τους όγκους (123, 125, 126). Οι συγγενείς και κληρονομικά προκληθείσες διαταραχές όπως η δισχιδής ράχη δεν καταγράφονται στις μελέτες αυτές, καθώς τα στοιχεία συλλέγονται συνήθως σε διαφορετικά πλαίσια.
Πηγές(80)
Θνησιμότητα και Προσδόκιμο Ζωής Το κεφάλαιο αυτό αναφέρεται συνοπτικά σε όσα γνωρίζουμε σχετικά με την επίδραση της ΚΝΜ στον κίνδυνο θνησιμότητας και στο προσδόκιμο ζωής –σημαντικές πληροφορίες για τον αποτελεσματικό σχεδιασμό και την κατανομή πόρων. Οι βελτιώσεις σχετικά με την αναγνώριση της ΚΝΜ, την αξιολόγηση, την προ-νοσοκομειακή διαχείριση, τις υπηρεσίες περίθαλψης τραύματος, την γενική κλινική περίθαλψη και τις υπηρεσίες αποκατάστασης έχουν συμβάλει 23
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Πλαίσιο 2.1. Επίπτωση δισχιδούς ράχης Η πλειοψηφία των ερευνών εκτιμούν την επίπτωση της δισχιδούς ράχης ανάμεσα στο 2 και στο 12 ανά 10000 γεννήσεις ζωντανών νεογνών. Ορισμένες έρευνες δείχνουν πολύ μεγαλύτερα ποσοστά, συμπεριλαμβανομένων εκείνων από το Αμάν (32 ανά 10000) και την Κίνα (58 ανά 10000). Μια μετά-ανάλυση που διενεργήθηκε για αυτή την αναφορά κατέληξε σε συνολικό ποσοστό επίπτωσης δισχιδούς ράχης περίπου 4.5/10000 (95% CI: 3.7-5.3) σε έρευνες που χρησιμοποιούν στοιχεία ζωντανών γεννήσεων, ενώ εκείνες που χρησιμοποιούν στοιχεία ζωντανών γεννήσεων και θνησιγένειας, ή ζωντανών γεννήσεων, θνησιγένειας και διακοπής της εγκυμοσύνης αναφέρουν ποσοστά επίπτωσης περίπου 10.0/10 000 (95% CI: 8.1-11.8) και 9.1/10 000 (95% CI: 6.7-11.4), αντίστοιχα (βλέπε Τεχνικό Παράρτημα C για χρησιμοποιούμενες μεθόδους και ορολογίες). Θα ήταν πιο εύλογο να περιμένει κανείς ότι τα πορίσματα χωρών που αναφέρουν ποσοστά επίπτωσης βάσει στοιχείων ζωντανών γεννήσεων, θνησιγένειας και διακοπής της εγκυμοσύνης θα παρουσίαζαν υψηλότερα ποσοστά επίπτωσης. Όπως απεικονίζεται, ωστόσο, στην παρακάτω εικόνα, δεν συμβαίνει αυτό. Αυτό μπορεί να οφείλεται στη διακύμανση των πηγών δεδομένων που χρησιμοποιήθηκαν για τους υπολογισμούς, καθώς και για τη διαφοροποίηση των χωρών με επίπτωση δισχιδούς ράχης. Σημείωση: Η εικόνα περιλαμβάνει ένα Forest plot, το οποίο παρέχει μια συνολική γραφική απεικόνιση , καθώς και μια συνολική στατιστική, μιας μετα-ανάλυσης των ποσοστών επίπτωσης της δισχιδούς ράχης όπως έχει αναφερθεί παγκοσμίως. Τα δεδομένα που χρησιμοποιήθηκαν στην μετα-ανάλυση εξήχθησαν από έρευνες που αναγνωρίστηκαν σε συστηματική ανασκόπηση της σχετικής βιβλιογραφίας. Το μέγεθος των γκρι τετραγώνων για κάθε έρευνα είναι αναλογικό σε σχέση με το βάρος που έχει δοθεί στην έρευνα για τη μετα-ανάλυση. Κάθε έρευνα εκφράζει το 95% του διαστήματος εμπιστοσύνης, που απεικονίζεται με μαύρες οριζόντιες γραμμές που διασχίζουν τις σημειακές εκτιμήσεις της επίπτωσης της δισχιδούς ράχης. Το συνολικό ποσοστό επίπτωσης της δισχιδούς ράχης παρουσιάζεται σε σχήμα ρόμβου, το εύρος του οποίου αντιπροσωπεύει το 95% του διαστήματος εμπιστοσύνης, επικεντρωμένο στη συνολική στατιστική. Σημείωση: * = Μετα-ανάλυση υποομάδας: Πηγές: a (97); b (92); c (93); d (94); e (95); f (96); g (97) h (98); i (99); j (100); k (101); l (102); m (103); n (104) o (105);p (106); q (106); r (107); s (108); t (109); u [(110) (111)]; v [(112); (113)]; w [(114); (115); (116)]; x (117); y (118) z (119); aa (120); ab (121); ac (120).
24
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
στην επέκταση του προσδόκιμου ζωής των ατόμων με ΚΝΜ σε υψηλού εισοδήματος χώρες, παράλληλα με μείωση του κινδύνου θνησιμότητας από δευτερογενείς αιτίες. Τα άτομα με ΚΝΜ εξακολουθούν να διατρέχουν μεγαλύτερη πιθανότητα θανάτου – και πρόωρου θανάτου – σε σχέση με τα άτομα χωρίς ΚΝΜ. Είναι επίσης πολύ πιθανότερο να πεθάνουν εξαιτίας συγκεκριμένων καταστάσεων υγείας σε σχέση με τον γενικότερο πληθυσμό. Στις περισσότερες περιπτώσεις, τον πρώτο χρόνο μετά τον τραυματισμό υπάρχει ο υψηλότερος κίνδυνος θανάτου για άτομα με ΚΝΜ, και πολλοί άνθρωποι με ΚΝΜ σε χαμηλού εισοδήματος χώρες πεθαίνουν από δευτερογενείς αιτίες που μπορούν να προληφθούν. Τα άτομα με ΚΝΜ πεθαίνουν νωρίτερα από τα άτομα χωρίς ΚΝΜ. Σε γενικές γραμμές, έρευνες έχουν δείξει ότι τα άτομα με ΚΝΜ είναι 2 με 5 φορές πιθανότερο να πεθάνουν πρόωρα από ότι τα άτομα χωρίς ΚΝΜ (βλέπε Πίνακα 2.4). Ένας άλλος τρόπος εκτίμησης της επίδρασης της ΚΝΜ είναι να λάβουμε υπόψη την επίπτωση της στο προσδόκιμο ζωής, στο χρονικό διάστημα δηλαδή που κανείς προσδοκά ότι θα ζήσει. Λίγες μελέτες συγκρίνουν άτομα με ΚΝΜ με τον γενικό πληθυσμό. Ωστόσο, μία μελέτη από την Αυστραλία έδειξε ότι άτομα με επίπεδο βλάβης μεταξύ Α1 και Α4 έχουν προσδόκιμο επιβίωσης μόνο 70% συγκριτικά με το γενικό πληθυσμό στην ηλικία των 25 ετών (βλέπε Σχήμα 2.10) (34). Ο κίνδυνος θνησιμότητας είναι ψηλότερος το πρώτο έτος μετά από τον τραυματισμό για τα άτομα με ΚΝΜ (57,129). Ο κίνδυνος θνησιμότητας μεταξύ ατόμων με ΚΝΜ εξαρτάται από τη σοβαρότητα και το επίπεδο της βλάβης. Οι τετραπληγικοί αποβιώνουν νωρίτερα από τους παραπληγικούς (34,127,130). Μια Φιλανδική μελέτη έδειξε ότι ο δείκτης θνησιμότητας ήταν 2,3 για την παραπληγία και 3.0 για την τετραπληγία (127), ενώ στην Αυστραλία οι δείκτες ήταν 1,7 και 2,2 αντίστοιχα. Η φιλανδική μελέτη έδειξε επίσης ότι η θνησιμότητα ήταν υψηλότερη σε άτομα με πλήρη βλάβη συγκριτικά με ατελή, με την πλήρη βλάβη σχεδόν να διπλασιάζει το δείκτη θνησιμότητας για τα άτομα με παραπληγία και σχεδόν να τον τριπλασιάζει για αυτά με τετραπληγία. Το προσδόκιμο επιβίωσης στις αναπτυγμένες χώρες αυξήθηκε από το 1950. Διαχρονικές μελέτες σε περιοχές υψηλού εισοδήματος έχουν δείξει μια στα-
θερή άνοδο στο προσδόκιμο επιβίωσης ατόμων με ΚΝΜ. Μια μελέτη από τις ΗΠΑ για ΤΚΝΜ παρατήρησε πτώση 40% στην θνησιμότητα από το 1973 μέχρι το 2004 για τα 2 πρώτα έτη μετά από την κάκωση, ενώ πέραν των 2 πρώτων ετών παρέμενε σχετικά σταθερή (131). Παρομοίως, άλλη έρευνα έδειξε ετήσια μείωση 3% στην θνησιμότητα της ΤΚΝΜ μεταξύ 1981 και 1988, και ιδιαίτερα ανάμεσα σε άνδρες, λευκούς, και θύματα τροχαίων ατυχημάτων (132). Η πρόοδος αυτή αντανακλά τις βελτιώσεις στην κλινική φροντίδα και την Ιατρική Αποκατάσταση σε άτομα με ΚΝΜ τα τελευταία 60 χρόνια. Δευτερογενείς επιπλοκές απότοκες της ΚΝΜ δεν είναι πλέον η κύρια αιτία θανάτου των ατόμων με ΚΝΜ σε χώρες υψηλού εισοδήματος. Στις αναπτυγμένες χώρες υπήρξε μια μετακίνηση από τις κύριες αιτίες θανάτου από τις ουρολογικές επιπλοκές, όπως σηψαιμία ουροποιητικού ή νεφρική ανεπάρκεια, σε αιτίες θανάτου παρόμοιες με το γενικό πληθυσμό, όπως αναπνευστικά προβλήματα, και ειδικότερα πνευμονία και γρίπη (11, 50,130, 133, 134). Μερικές μελέτες έχουν διαπιστώσει υψηλά ποσοστά Σχήμα 2.10. Το προσδόκιμο ζωής στην Αυστραλία ατόμων με ΚΝΜ με βάση την ηλικία και σε σύγκριση με τον γενικό πληθυσμό
Προσδόκιμο Επιβίωσης ( % )
Ηλικία (έτη) Όλα D Θ1-Ι5 ABC Α5-Α8 ABC A1-4 ABC
Σημείωση: Α: πλήρης παράλυση, Β: μόνο αισθητικότητα κάτω από το επίπεδο της βλάβης, C: ατελής κινητική λειτουργία κάτω από το επίπεδο της βλάβης, D: μέτρια προς καλή κινητική λειτουργία κάτω από το επίπεδο της βλάβης. Πηγή (34).
25
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
θνησιμότητας από καρδιαγγειακές παθήσεις, αυτοκτονία, και νευρολογικά προβλήματα (11, 50, 127, 130, 133). Τα άτομα με ΚΝΜ όμως πεθαίνουν από αυτά τα αίτια πιο συχνά από τα άτομα του γενικού πληθυσμού. Για παράδειγμα τα ευρήματα από μία μελέτη στη Νορβηγία, υποδεικνύουν μια γενική αύξηση του κινδύνου θνησιμότητας από παθήσεις του αναπνευστικού συστήματος μεταξύ των περιπτώσεων ΚΝΜ σε σύγΠίνακας 2.4. Χώρα
οτι οι παθήσεις του αναπνευστικού, η ισχαιμική καρδιακή νόσος, ο καρκίνος και η αυτοκτονία αποτελούν τις πιο συχνές αιτίες θανάτου (57). Σε χώρες με χαμηλό εισόδημα, τα άτομα με κάκωση νωτιαίου μυελού εξακολουθούν να πεθαίνουν από δευτεροπαθείς επιπλοκές που θα μπορούσαν να είχαν προληφθεί όπως π.χ. ουρολογικές επιπλοκές και έλκη πίεσης. Σε χώρες με χαμηλούς οικονομικούς πόρους, αν και δεν υπάρχουν επαρκή δεδομένα, λόγω του
Δείκτες Θνησιμότητας για τραυματική ΚΝΜ σε 4 χώρες Τοποθεσία Έτη Παιδιατρική/Ενηλίκων ΤΚΝΜ Ενηλίκων Ενηλίκων& Παιδιατρική Ενηλίκων& Παιδιατρική Ενηλίκων
Δείκτης θνησιμότητας (SMR) 2.7 1.9 5.0 2.1
Φιλανδία Νορβηγία Εσθονία Αυστραλία
Ελσίνκι Χόρταλαντ και Φιορδ Επικράτεια Επικράτεια
1976-2005 1997-2001 1997-2001 1986-1997
Πηγές (127-129)
κριση με το γενικό πληθυσμό, με δείκτη θνησιμότητας (SMR) 1.96 (135). Στην Αυστραλία, μια μελέτη διαπίστωσε δείκτη θνησιμότητας εξαρτώμενο από την αιτία 17.11 για την πνευμονία και τη γρίπη, 4.37 για την αυτοκτονία, και 6,84 για τις παθήσεις από το ουροποιητικό σύστημα (34). Μια νορβηγική μελέτη αναφέρει
εξαιρετικά υψηλού ποσοστού της μη συνεχιζόμενης παρακολούθησης (41), ανεπίσημα στοιχεία υποδεικνύουν ότι οι ουρολογικές επιπλοκές παραμένουν από τις πιο κοινές αιτίες θανάτου (136). Θανατηφόρες λοιμώξεις από μη θεραπευμένα έλκη πίεσης, λόγω της απουσίας επαρκούς ιατρικής φροντίδας, είναι επίσης
Πλαίσιο 2.2. Η κατάλληλη προ-νοσοκομειακή αντιμετώπιση κατά την περίοδο αμέσως μετά τον τραυματισμό μειώνει τους θανάτους και τις δευτερογενείς επιπλοκές Μια μεγάλη αναδρομική μελέτη στην Αυστραλία από τα αποτελέσματα 324 ασθενών που είχαν διακομισθεί με ασθενοφόρο και είχαν εισαχθεί σε μονάδα κακώσεων νωτιαίου μυελού διεξήχθη μεταξύ 2004 και 2008. Τα περισσότερα άτομα, στον τόπο του ατυχήματος, είχαν ζωτικές μετρήσεις εντός των φυσιολογικών ορίων, αλλά λόγω της φύσης της κάκωσης αντιμετωπίσθηκαν από το πλήρωμα του ασθενοφόρου ως δυνητικά ΚΝΜ. Αυτό το πρωτόκολλο έσωσε πολλές ζωές, αφού 88% διαγνώσθηκαν με ΚΝΜ όταν εισήχθησαν σε μονάδα κακώσεων νωτιαίου μυελού. Ο μέσος χρόνος από την κάκωση μέχρι την εισαγωγή ήταν κάτω από 12 ώρες. Ωστόσο, εάν εισάγονταν αρχικά σε γενικό κέντρο τραύματος, συνήθως χρειάζονταν περισσότερο από 24 ώρες μέχρι ο ασθενής να αντιμετωπιστεί από τους ειδικούς ιατρούς ΚΝΜ, και αυτά τα άτομα ήταν 2.5 φορές πιο πιθανό να εμφανίσουν δευτερογενείς επιπλοκές σε σύγκριση με εκείνους που είχαν εισαχθεί απευθείας σε μονάδα ΚΝΜ. Αξίζει να σημειωθεί ότι η μελέτη έδειξε επίσης ότι, όταν η κάκωση προκλήθηκε από μια μικρή πτώση, οι ασθενείς ήταν πάντα μεγαλύτερης ηλικίας, αλλά ήταν πολύ λιγότερο πιθανό να αντιμετωπισθούν από το πλήρωμα ασθενοφόρου ως δυνητική ΚΝΜ. Αυτό είχε ως αποτέλεσμα αυξημένες διακομιδές εντός δομών υγείας, έτσι ώστε λιγότερο από το ήμισυ αυτής της ομάδας να φτάσει στη μονάδα κακώσεων νωτιαίου μυελού μέσα σε 24 ώρες και να υποστεί σημαντικά υψηλότερο ποσοστό θανάτου και δευτερογενών επιπλοκών. Με δεδομένη την αυξανόμενη γήρανση του πληθυσμού και την αύξηση στη συχνότητα εμφάνισης της ΚΝΜ σε πτώσεις που σχετίζονται με την γήρανση, η μελέτη προτείνει ότι οι τραυματισμοί ακόμα και από χαμηλές πτώσεις ηλικιωμένων θα πρέπει να προσεγγίζονται με μεγαλύτερη προσοχή ως δυνητικές ΚΝΜ.
Πηγή (75).
26
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
μια κοινή αιτία θανάτου στις χώρες με χαμηλό εισόδημα (45, 136). Τα ποσοστά θνησιμότητας μεταξύ των ατόμων με ΚΝΜ επηρεάζονται σε μεγάλο βαθμό από την ικανότητα του υγειονομικού συστήματος περίθαλψης, και ιδιαίτερα με την αποτελεσματική λειτουργία των τμημάτων επειγόντων περιστατικών. Η διακομιδή και ο χρόνος εισαγωγής στο νοσοκομείο μετά τον τραυματισμό είναι σημαντικοί παράγοντες που επηρεάζουν την επιβίωση. Οι πρώτες 24 ώρες μετά από ΚΝΜ είναι οι πιο κρίσιμες για την επιβίωση. Μια μελέτη στη Νιγηρία διαπίστωσε ότι στους προγνωστικούς παράγοντες θνησιμότητας μετά από έξι εβδομάδες συμπεριλαμβάνεται η καμπτική θέση κατά τη διάρκεια της διακομιδής (odds ratio 23.52), καθώς και η παραμονή σε αυτήν για 24 ώρες ή περισσότερο μετά τον τραυματισμό (odds ratio 5,48). Ενώ η συνολική ενδονοσοκομειακή θνησιμότητα στις υψηλού εισοδήματος δομές του Καναδά και των ΗΠΑ είναι 11,6% και 6,1%, αντίστοιχα (137,138), η Σιέρα Λεόνε έχει ένα μέσο ποσοστό θνησιμότητας 29% (45) και η Νιγηρία σχεδόν 35% (41). Αυτό υπογραμμίζει τη σημασία της ταχείας αναγνώρισης, της έγκαιρης αξιολόγησης και κατάλληλης διαχείρισης των πιθανών ΚΝΜ (139). Σε μια μεγάλη αναδρομική μελέτη των αποτελεσμάτων 324 ασθενών στην Αυστραλία που είχαν μεταφερθεί με ασθενοφόρο και εισήχθησαν σε ειδική μονάδα ΚΝΜ, αυτό επιτεύχθηκε επειδή τα πληρώματα των ασθενοφόρων είχαν εκπαιδευτεί να εντοπίζουν ζωτικής σημασίας κλινικά σημεία της ΚΝΜ και για αυτό το λόγο αυτοί οι ασθενείς κατευθύνονταν σε εξειδικευμένη κλινική ΚΝΜ , όπου μάλιστα περίπου 88% διαγνώσθηκαν ως κακώσεις νωτιαίου μυελού ((75), βλέπε Πλαίσιο 2.2). Σε γενικές γραμμές, τα ποσοστά θνησιμότητας στα νοσοκομεία αντικατοπτρίζουν τη σημασία της υψηλής ποιότητας φροντίδας για την επιβίωση των ατόμων με ΚΝΜ, και τα ποσοστά αυτά μπορούν να συνδεθούν με το συνολικό επίπεδο των παροχών κάθε χώρας.
Κόστος της κάκωσης του νωτιαίου μυελού Το κόστος της ΚΝΜ - άμεσα και έμμεσα– είναι σημαντικό για την εκτίμηση της οικονομικής και κοινωνικής επίπτωσης των ΚΝΜ. Οι άμεσες δαπάνες μπορούν να περιλαμβάνουν τις υπηρεσίες υγείας και
αποκατάστασης, πιο ακριβές δυνατότητες μεταφοράς, ειδικές δίαιτες, και προσωπικό βοηθό. Το έμμεσο κόστος, τόσο οικονομικό όσο και μη-οικονομικό κόστος, μπορεί να περιλαμβάνει την απώλεια παραγωγικότητας λόγω πρόωρου θανάτου ή αναπηρίας, κοινωνικής απομόνωσης και άγχους. Το κόστος της ΚΝΜ επηρεάζεται σε μεγάλο βαθμό από τους ακόλουθους παράγοντες: ■ Τη φύση του αρχικού τραυματισμού ή το υποκείμενο ιατρικό ιστορικό. Για την ΤΚΝΜ, το κόστος επηρεάζεται από το επίπεδο και τη βαρύτητα της βλάβης (140-144), και για τη ΜΤΚΝΜ επηρεάζεται από τη βαρύτητα της υποκείμενης κατάστασης της υγείας (145, 146). ■ Το χρόνο έναρξης της αντιμετώπισης, ιδίως μεταξύ της βλάβης και της πρώτης κατάλληλης ιατρικής αντιμετώπισης. ■ Η διάρκεια παραμονής στο νοσοκομείο – συμπεριλαμβανομένων της αρχικής εισαγωγής (146) και κάθε επιπρόσθετης νοσηλείας που προκαλείται από αποτυχία πρόληψης ή διαχείρισης των συνεπειών για την υγεία λόγω δευτερογενών επιπλοκών. Τα στοιχεία αποδεικνύουν ότι δεν υπάρχουν διαφορές στο κόστος με βάση το φύλο (147). ■ Άμεσο ιατρικό κόστος - συμπεριλαμβανομένων των αναπηρικών αμαξιδίων και αναπνευστήρων. Η σύγκριση των στοιχείων του κόστους μεταξύ των διαφόρων χωρών πρέπει να γίνεται με ιδιαίτερη προσοχή. Άμεσες συγκρίσεις μεταξύ χωρών για το "εκτιμώμενο κόστος της ΚΝΜ" είναι δύσκολο. Διαφορετικές κατηγορίες των άμεσων και έμμεσων δαπανών χρησιμοποιούνται και οι εκτιμήσεις του κόστους βασίζονται σε διαφορετικές στατιστικές τεχνικές και στοιχεία μεταβλητής ποιότητας. Ακόμη και στο εσωτερικό μιας χώρας, οι εκτιμήσεις για τις άμεσες δαπάνες για τη φροντίδα υγείας ποικίλλουν ανάλογα με την πηγή των δεδομένων (148-150). Μια γενική εικόνα των δαπανών της ΚΝΜ προκύπτει από τα διαθέσιμα στοιχεία, ακόμη και αν δεν είναι δυνατό να υπολογιστούν πιο περιφερειακές ή παγκόσμιες εκτιμήσεις: 1. Το επίπεδο και η βαρύτητα της βλάβης έχουν μια σημαντική επίδραση στο κόστος, με υψηλότερες δαπάνες να σχετίζονται με τις υψηλότερες κακώσεις νωτιαίου μυελού (π.χ. τετραπληγία έναντι παραπληγίας), και με πλήρεις ΚΝΜ σε σύγκριση με ατελείς ΚΝΜ. 27
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
2. Οι δαπάνες για ΜΤΚΝΜ τείνουν να είναι χαμηλότερες από ό, τι εκείνες για ΤΚΝΜ, κυρίως λόγω της ηλικίας έναρξης. 3. Οι άμεσες δαπάνες είναι υψηλότερες κατά το πρώτο έτος μετά την έναρξη της ΚΝΜ και στη συνέχεια μειώνονται σημαντικά με την πάροδο του χρόνου. 4. Οι έμμεσες δαπάνες, ιδίως η απώλεια παραγωγικότητας, μπορεί να υπερβούν τις άμεσες. 5. Μεγάλο μέρος του κόστους καλύπτεται από τα ίδια τα άτομα με ΚΝΜ. Τα στοιχεία αυτά αναλύονται με μεγαλύτερη λεπτομέρεια παρακάτω. 1. Το επίπεδο και η βαρύτητα της κάκωσης έχουν μια σημαντική επίδραση στο κόστος (134, 151, 152). Η τετραπληγία σχετίζεται με υψηλότερο κόστος από ό,τι η παραπληγία (42, 153, 154). Από Στοιχεία από την Εθνικό Στατιστικό Κέντρο Κακώσεων Νωτιαίου Μυελού στις ΗΠΑ εκτιμούν ότι το 2013, το συνολικό κόστος ζωής για ένα άτομο που τραυματίστηκε σε ηλικία 25 ετών αντιστοιχεί σε 4.6 εκατομμύρια δολάρια ΗΠΑ για την υψηλή τετραπληγία σε σύγκριση με 2.3 εκατομμύρια δολάρια για την παραπληγία. Στην Αυστραλία το κόστος κατά την διάρκεια της ζωής ανά περίπτωση εκτιμάται ότι είναι 5,0 εκατομμύρια δολάρια Αυστραλίας για ένα άτομο με παραπληγία και 9,5 εκατομμύρια για την τετραπληγία (154). Η μελέτη αυτή από την Αυστραλία συνέκρινε και το κόστος με ένα φάσμα νευρολογικών παθήσεων, όπως την άνοια, την πολλαπλή σκλήρυνση, την εγκεφαλική παράλυση και τη διπολική διαταραχή, και διαπίστωσε ότι οι δαπάνες που συνδέονται με την τετραπληγία ήταν 2 με 20 φορές υψηλότερες από εκείνες για τις λοιπές παθήσεις (154). Με βάση τη βαρύτητα, μερικές μελέτες έχουν διαπιστώσει ότι το κόστος είναι υψηλότερο για την πλήρη ΚΝΜ σε σύγκριση με την ατελή ΚΝΜ. Για παράδειγμα, τα δεδομένα από τον Καναδά για το κατά μέσο όρο άμεσο κόστος, το οποίο περιλάμβανε νοσηλεία, ιατρικές υπηρεσίες, φροντίδα στο σπίτι, και μακροχρόνια φροντίδα, αποκάλυψαν ότι οι μέσες αναλογούσες δαπάνες κατά το πρώτο έτος ανήλθαν σε $ 121600 (2002 δολάρια Καναδά) ανά άτομο με πλήρη ΚΝΜ, και $ 42100 ανά άτομο με ατελή βλάβη. Στα επόμενα πέντε χρόνια, το ετήσιο κόστος ήταν 5400 δολάρια και 2800 δολάρια για τα άτομα με πλήρεις και ατελείς ΚΝΜ, αντίστοιχα ((144), βλέπε Σχήμα 2.11). 2. Οι δαπάνες για τη ΜΤΚΝΜ τείνουν να είναι χα28
μηλότερες από αυτές για την ΤΚΝΜ κυρίως λόγω της ηλικίας έναρξης Η ΜΤΚΝΜ συνήθως προσβάλει πληθυσμούς μεγαλύτερης ηλικίας που επιβαρύνονται με λιγότερα έμμεσα έξοδα για την υπόλοιπη ζωή τους, κυρίως γιατί δεν ανήκουν πλέον στο εργατικό δυναμικό. Εξαίρεση αποτελεί η δισχιδής ράχη όχι μόνο γιατί αρχίζει σε νηΕικόνα 2.11. Άμεσες ετήσιες δαπάνες υγείας ανά άτομο σύμφωνα με το επίπεδο και τη σοβαρότητα της ΚΝΜ για άτομα που τραυματίστηκαν στην Αλμπέρτα του Καναδά, 1992-1994 (2002 δολάρια Καναδά)
Τετραπληγία Τετραπληγία Θωρακική πλήρης ατελής πλήρης
Θωρακική ατελής
οσφυική ιππουρίδα
Πηγή (144).
πιακή ηλικία αλλά και λόγω των μεγάλων δαπανών σε υπηρεσίες για διαταραχές αναπτυξιακές και συμπεριφοράς και για κατ’οίκον νοσηλεία (155-157). 3. O άμεσες δαπάνες είναι υψηλότερες κατά το πρώτο έτος μετά την ΚΝΜ ενώ μειώνονται σημαντικά με την πάροδο του χρόνου (134,151,152). Οι εκτιμήσεις των δαπανών υγείας της βάσης δεδομένων του Εθνικού Στατιστικού Κέντρου για την ΚΝΜ, στις ΗΠΑ, για το έτος 2013 δίνονται στον Πίνακα 2.5. Οι συνεχιζόμενες δαπάνες των βοηθημάτων, των εξοπλισμών και της μακροχρόνιας φροντίδας όπως υποβοηθούμενη διαμονή, προσωπική βοήθεια και κοινωνικές υπηρεσίες υποστήριξης, τείνουν να είναι υψηλές ακόμα και όταν οι αρχικά υψηλές άμεσες δαπάνες υγείας αρχίζουν να μειώνονται (154). Η Σχήμα 2.12 δείχνει την εξέλιξη των δαπανών για την τετραπληγία στην Αυστραλία
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
Πίνακας 2.5.
Μέση ετήσια δαπάνη για την ΚΝΜ σύμφωνα με τη σοβαρότητα της βλάβης Μέσα ετήσια έξοδα (2013 US $) Πρώτος χρόνος Κάθε επόμενος χρόνος 181 328 111 237 67 415 41 393
Σοβαρότητα της βλάβης
Υψηλή τετραπληγία (Α1-Α4) Χαμηλή τετραπληγία (Α5-Α8) Παραπληγία Ατελής βλάβη με οποιοδήποτε κινητικό επίπεδο
1 044 197 754 524 508 904 340 787
Πηγή (153).
4. Οι έμμεσες δαπάνες μπορούν να ξεπεράσουν τις άμεσες δαπάνες. Αν και τα άμεσα ιατρικά έξοδα και οι δαπάνες για την αποκατάσταση είναι μεγάλες και αυξανόμενες (158), οι έμμεσες δαπάνες, και ιδιαίτερα αυτές που συνδέονται με την απώλεια της παραγωγικότητας κατά τη διάρκεια της ζωής μπορεί να είναι μεγαλύτερες από τα άμεσα έξοδα (159). Μια μελέτη για τις δαπάνες στην οξεία φάση (έως 6 εβδομάδες) σε 34 άτομα με ΚΝΜ στη Νιγηρία βρήκαν μια εξαπλάσια διαφορά ανάμεσα στις μέσες άμεσες δαπάνες (ένας μέσος όρος 239$ US που συμπεριλάμβαναν νοσηλεία, ιατρική φροντίδα, χειρουργικές επεμβάσεις, διαμονή, φαρμακευτική αγωγή και χρεώσεις εργαστηριακών εξετάσεων), και στις έμμεσες δαπάνες (US$ 1360, που συμπεριλαμβάνουν το σύνολο του εισοδήματος και τη αντικατάσταση και επιδιόρθωση του οχήματος) (42). Το συνολικό κόστος της αντιμετώπισης αντιπροσώπευε περισσότερο από το 50% του ετήσιου εισοδήματος του ασθενούς (42). 5. Πολλές από τις δαπάνες γεννιούνται από τους ανθρώπους με ΚΝΜ. H Victorian Neurotrauma Initiative (Πρωτοβουλία για το Νευροτραύμα στη Βικτώρια) υπολόγισε ότι το συνολικό ετήσιο κόστος για την ΚΝΜ στην Αυστραλία είναι περίπου AUS$ 2 δισεκατομμύρια (1.3 δις για την τετραπληγία και 689.7 εκατομμύρια για την παραπληγία), 40% των οποίων πληρώθηκαν από τους ίδιους τους ασθενείς με ΚΝΜ. Η πολιτειακή κυβέρνηση κάλυψε 44% και η ομοσπονδιακή κυβέρνηση ένα περαιτέρω 10% τω δαπανών (154).
Σχήμα 2.12.
Μέση άμεση ετήσια δαπάνη στην πορεία του χρόνου, ανάλογα με το είδος της δαπάνης, για την τετραπληγία
Έτη μετά τη βλάβη Δαπάνες υγείας Εξοπλισμός και τροποποιήσεις Μακροχρόνια φροντίδα
Πηγή (154). © VNI, βασισμένο στα δεδομένα TAC για τα χρόνια 2004-2008 Η έκθεση της Access Economics Pty Limited για το Victorian Neurotrauma Initiative του Ιουνίου 2009 με τίτλο «Το οικονομικό κόστος για τη Κάκωση Νωτιαίου Μυελού και την Κρανιοεγκεφαλική Κάκωση στην Αυστραλία» που όπως προαναφέρθηκε δεν είναι επίσημη δημοσίευση του Παγκόσμιου Οργανισμού Υγείας. Αυτή και άλλες σχετικές δημοσιεύσεις είναι διαθέσιμες δωρεάν στο ιστότοπο www.tac.vic.gov.au
Στοιχεία και δεδομένα για την κάκωση νωτιαίου μυελού Είναι σημαντικό να προάγεται η γνώση για τα άτομα με ΚΝΜ και να ενισχύεται η βάση αποδεδειγμένων
δεδομένων για την πρόληψη, υποστήριξη και φροντίδα αυτών των ανθρώπων. Σ’ αυτό το τμήμα αναφέρονται θέματα και θεωρήσεις σχετικές με δεδομένα και αποδείξεις για την ΚΝΜ με μία πιο λεπτομερή επεξήγηση των περιορισμών των δεδομένων που αναφέρθηκαν στο Τεχνικό παράρτημα Β 29
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Δεδομένα σχετικά με την ΚΝΜ μπορούν να ληφθούν από πηγές πληροφοριών ειδικές για την ΚΝΜ ή μπορεί να συσχετιστούν με γενική συλλογή δεδομένων για την αναπηρία με συνδέσμους για τα εξωτερικά αίτια της βλάβης. Η πηγή, ο τύπος των δεδομένων και τα εργαλεία/συνθήκες για τη συλλογή των πληροφοριών συζητούνται παρακάτω και περιγράφονται στον Πίνακα 2.6.
Πηγές δεδομένων Υποδομές υγείας. Μία μεγάλη ποικιλία από υποδομές υγείας μπορεί να είναι η πηγή των δεδομένων για την Πίνακας 2.6. Πηγή Υποδομές υγείας
ΚΝΜ, συμπεριλαμβανομένων των αρχείων των ασθενών από νοσηλείες τους σε νοσοκομεία, από υπηρεσίες πρώτων βοηθειών και ασθενοφόρων, από κλινικές και οικογενειακούς γιατρούς. Αυτά τα δεδομένα αφορούν μόνο τον πληθυσμό που έκανε χρήση των παραπάνω υπηρεσιών υγείας και μπορεί να μην είναι αντιπροσωπευτικά του γενικού πληθυσμού της χώρας με ΚΝΜ. Κεντρικό μητρώο ασθενών με ΚΝΜ. Μερικές χώρες υψηλού εισοδήματος έχουν εγκαταστήσει ένα κεντρικό μητρώο για τις κακώσεις νωτιαίου μυελού το οποίο χρησιμοποιεί επιστημονικά κριτήρια για τη συλλογή, τη διαχείριση και την ανάλυση των πληροφοριών για την ΚΝΜ, για παράδειγμα το Μητρώο Rick
Πηγή, τύπος και πρότυπα/εργαλεία για τη συλλογή πληροφοριών για την ΚΝΜ Είδη δεδομένων Ηλικία κατά τη βλάβη Φύλο Βλάβη Νευρολογικό επίπεδο και έκταση της βλάβης (παραπληγία, τετραπληγία, πλήρης, ατελής) Δαπάνες περίθαλψης Ηλικία κατά τη βλάβη Φύλο Φυλή, εθνικότητα Επαγγελματική κατάσταση Αιτιολογία Νευρολογικό επίπεδο και έκταση της βλάβης (παραπληγία, τετραπληγία πλήρης, ατελής) κατά την έξοδο Τόπος διαμονής του ατόμου μετά το εξιτήριο Χρόνος διαμονής στο νοσοκομείο Δαπάνες περίθαλψης Αίτια θανάτου Απογραφή Εθνικές κοινωνικές δημοσκοπήσεις και δημοσκοπήσεις υγείας Εθνική δημοσκόπηση για την αναπηρία Ηλικία κατά τη βλάβη Φύλο Αίτια βλάβης Νευρολογικό επίπεδο και έκταση βλάβης Παραπληγία,τετραπληγία,πλήρης,ατελής), κατά την έξοδο Κόστος των αξιώσεων
Πρότυπα/εργαλεία για τη συλλογή πληροφοριών ICD ASIA/ISCoS International SCI Data Sets SHA
Κεντρικό μητρώο
ICECI ASIA/ISCoS International SCI Data Sets SHA ICD
Εθνικές έρευνες
Washington Group 6 Questions (μόνο απογραφές) WHO Disability Assessment Schedule WHO and World Bank Model Disability Survey
Ασφαλιστικές εταιρίες
30
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
Πλαίσιο 2.3. Ένα παράδειγμα μητρώου για την ΚΝΜ Το μητρώο Rick Hansen για τη Κάκωση Νωτιαίου Μυελού είναι μία ευρεία βάση δεδομένων του Καναδά για ασθενείς που νοσηλεύθηκαν σε 31 μεγάλες δομές τραύματος και αποκατάστασης σε όλες τις επαρχίες. Σήμερα οι περιπτώσεις ΜΤΚΝΜ και ατελούς ΚΝΜ (D) δεν περιλαμβάνονται γιατί συχνά αντιμετωπίζονται σε δημόσια νοσοκομεία που δεν καλύπτονται από το μητρώο. Το μητρώο χρηματοδοτείται από τις Καναδικές και επαρχιακές κυβερνήσεις, ιστοτόπους που συμμετέχουν στο μητρώο και το ίδρυμα Rick Hansen. Διαφορετικές πηγές χρηματοδότησης παρέχουν μία συνεχή και αξιόπιστη βάση χρηματοδότησης, η οποία είναι το κλειδί για τη βιωσιμότητα του μητρώου. Κάθε συμμετέχουσα μονάδα στρατολογεί ασθενείς, αποκτά τη συγκατάθεσή τους και συλλέγει δεδομένα τα οποία αποθηκεύονται σε ανώνυμη μορφή. Ένα σύνολο από 260 δεδομένα στοιχεία από την προ-νοσοκομειακή, οξεία και την ενδονοσοκομειακή τους αποκατάσταση, όπως και δεδομένα μετά το έξοδό τους τους στη κοινότητα συλλέγονται μαζί με κοινωνικο-δημογραφικούς παράγοντες, ιατρικό ιστορικό, λεπτομέρειες για τον τραυματισμό, διάγνωση και επεμβάσεις, νευρολογική βλάβη, επιπλοκές και εκβάσεις που αναφέρονται από τους ίδιους τους ασθενείς. Οι συμμετέχοντες προσεγγίζονται 1, 2, 5 και 10 χρόνια μετά την έξοδό τους και μετά κάθε 5 χρόνια για να συμπληρώνουν ένα ερωτηματολόγιο έκβασης. Τα δεδομένα και τα στοιχεία αντιστοιχίζονται με τα Διεθνή Σύνολα Δεδομένων και τα Διεθνή Πρότυπα της Νευρολογικής Ταξινόμησης για την ΚΝΜ ( International Core Data Sets and the International Standards for Neurological Classification of SCI ) και συνδέονται και με άλλα μητρώα προς αποφυγή διπλοεγγραφής. Το μητρώο βελτίωσε την κλινική φροντίδα: ■ Τυποποιώντας την αξιολόγηση και κωδικοποίηση των κλινικών διαδικασιών που ενισχύουν τη συγκρισιμότητα των αποτελεσμάτων ■ Προσδιορίζοντας τις τάσεις με την πάροδο του χρόνου για τις ανάγκες επάνδρωσης ■ Παρέχοντας στο προσωπικό και τους ασθενείς πληροφορίες κατά τη διάρκεια των εκτιμήσεων παρακολούθησης στην κοινότητα. Το μητρώο έχει επίσης διευκολύνει την κλινική έρευνα ως εξής: ■ αναγνωρίζοντας άτομα που ενδιαφέρονται να συμμετέχουν σε κλινικές έρευνες ■ μειώνοντας το φορτίο των ερωτωμένων μέσω συμπλήρωσης πληροφοριών για κλινικές δοκιμασίες ■ παρέχοντας μια εφικτή αξιολόγηση υποδομών που συμμετέχουν στις κλινικές δοκιμές ■ δείχνοντας πώς οι ασθενείς διακινούνται μέσα στο Καναδικό σύστημα υγείας και τις διαφορές στην περίθαλψη που παρέχεται και χρηματοδοτείται σε διαφορετικές περιοχές Πηγές (160, 161)
Hansen για την Κάκωση Νωτιαίου Μυελού στον Καναδά (βλέπε Πίνακα 2.3), το Αυστραλιανό Μητρώο για την Κάκωση Νωτιαίου Μυελού (162) και το Μοντέλο Βάσης Δεδομένων για την Κάκωση Νωτιαίου Μυελού την οποία διαχειρίζεται το Εθνικό Στατιστικό Κέντρο για την ΚΝΜ στις ΗΠΑ (163, 164). Τα παραπάνω μητρώα έχουν ποικίλους βαθμούς αντιπροσωπευτικότητας. Καμία χώρα μέσου ή χαμηλού εισοδήματος δεν έχει αυτή τη στιγμή εθνικό μητρώο για την ΚΝΜ. Εθνικές απογραφές. Τα εθνικά δεδομένα για την αναπηρία προέρχονται από απογραφές ή δημοσκοπήσεις για την υγεία του πληθυσμού και κοινωνικές έρευνες, όπου όλες βασίζονται στην αυτοαξιολόγηση. Παρά το γεγονός ότι οι έρευνες αυτές συνήθως υποβάλουν ερωτήσεις σχετικά με την κινητικότητα, αν τα δεδομένα δεν διαχωρίζονται σύμφωνα με την ανικανότητα ή την κατάσταση της υγείας, θα έχουν περιο-
ρισμένη αξία σε ό,τι αφορά τη συλλογή πληροφοριών για την ΚΝΜ. Υπάρχουν ή βρίσκονται υπό ανάπτυξη αρκετά εργαλεία, τα οποία μπορούν να υποστηρίξουν την εθνική συλλογή δεδομένων, αυτά περιλαμβάνουν τις ερωτήσεις που αναπτύχθηκαν από την Ομάδα Washington για τις Στατιστικές Αναπηρίας της Παγκόσμιας Οργάνωσης Υγείας, και τις προτεινόμενες ερωτήσεις του Μοντέλου Έρευνας Αναπηρίας (Model Disability Survey) που επί του παρόντος βρίσκονται σε εξέλιξη από την ΠΟΥ (WHO) και την Παγκόσμια Τράπεζα (World Bank) . Οι ασφαλιστικές εταιρείες προσφέρουν ασφαλιστική κάλυψη έναντι διαφόρων κινδύνων, όπως η κακή υγεία, ατυχήματα με οχήματα, επαγγελματικές ή αθλητικές κακώσεις. Οι ασφαλιστές συλλέγουν και χρησιμοποιούν στατιστικές για να βοηθήσουν στον υπολογισμό του ρυθμού μελλοντικών αξιώσεων βασι31
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
σμένων σε δεδομένο ρίσκο, περιλαμβάνοντας, όπου χρειάζεται, τον αριθμό καινούργιων και υπαρχόντων περιστατικών ΚΝΜ. Αυτά τα στοιχεία χρησιμοποιούνται ως βάση για να υπολογιστεί το ασφάλιστρο και ως εκ τούτου μπορεί να είναι πολύ δύσκολο να αποκτηθούν.
Πρότυπα πληροφοριών Υπάρχουν τρεις γενικές πρότυπες πληροφορίες σχετικές με τις ΚΝΜ. Το πιο διαδεδομένο σύνηθες διαγνωστικό εργαλείο είναι η Διεθνής Ταξινόμηση Ασθενειών (International Classification of DiseasesICD) η οποία μπορεί να χρησιμοποιηθεί προκειμένου να ταξινομήσει ασθένειες και άλλα προβλήματα υγείας και καίριες καταγραφές, που περιλαμβάνουν πιστοποιητικά θανάτου και αρχεία υγείας και ελέγχουν την επίπτωση και τον επιπολασμό των ασθενειών. Σε πολλές χώρες αρχεία βασισμένα σε ICD χρησιμοποιούνται επίσης για λήψη αποφάσεων για αποζημίωση και κατανομή επιδομάτων (165). Η Διεθνής Ταξινόμηση Εξωγενών Αιτιών Κακώσεων (International Classification of External Cause of Injury-ICECI) χρησιμοποιείται για να περιγράψει, να μετρήσει και να ελέγξει τις συνθήκες του συμβάντος της κάκωσης συμπεριλαμβάνοντας τον μηχανισμό της κάκωσης, τα αντικείμενα και τις ουσίες που προκάλεσαν την κάκωση, την περιοχή που έλαβε μέρος, την δραστηριότητα κατά τον τραυματισμό, τον ρόλο της ανθρώπινης πρόθεσης, την χρήση αλκοόλ και άλλων ψυχοτρόπων ουσιών. Επίσης έχει άλλες ενότητες για συλλογή στοιχείων για την βία, μετακίνηση, περιοχή, αθλητική κάκωση ή κάκωση κατά την διάρκεια επαγγελματικής δραστηριότητας. Το Σύστημα Εκθέσεων Υγείας (System of Health Accounts-SHA) είναι ένα προτυποποιημένο πλαίσιο για την συλλογή διεθνών συγκρίσιμων χρηματικο-οικονομικών εκθέσεων υγείας, το οποίο οργανώθηκε με παρέμβαση, για εφαρμογή σε δημόσιους και ιδιωτικούς τομείς (166). Υπάρχουν επίσης τρείς ειδικές ταξινομήσεις για τις ΚΝΜ. Διεθνή Πρότυπα Νευρολογικής Ταξινόμησης των ΚΝΜ (International Standars for Neurological Classification of SCI) της Αμερικανικής Ένωσης Κακώσεων Νωτιαίου Μυελού (American Spinal Injury Association-ASIA) είναι ένα σύστημα 32
ταξινόμησης για την αξιολόγηση και ταξινόμηση του νευρολογικού επιπέδου και του βαθμού της ΚΝΜ. Το σύστημα ταξινόμησης περιέχει τρία στοιχεία: την Κλίμακα Ανικανότητας ASIA (AIS A-E), βαθμολόγηση κινητικότητας (βασισμένη στην νευρολογική εξέταση της μυϊκής λειτουργίας) και βαθμολόγηση αισθητικότητας (βασισμένη στην νευρολογική εξέταση της αισθητικής λειτουργίας). Αυτό το πρότυπο που πρόσφατα αναθεωρήθηκε από κοινού από την ASIA και την ISCoS, παρέχει αξιόπιστα στοιχεία για την κλινική φροντίδα και τις ερευνητικές μελέτες (167-170). Η Διεθνής Στοιχειοθέτηση Δεδομένων Κάκωσης Νωτιαίου Μυελού (International Spinal Cord Injury Data Sets) αναπτύχθηκε από την ISCoS για να διευκολύνει την σύγκριση κακώσεων και αποτελεσμάτων μεταξύ ασθενών, κέντρων και χωρών (171,172). Η Στοιχειοθέτηση Δεδομένων περιλαμβάνει το Διεθνές Κέντρο Στοιχειοθέτησης Δεδομένων ΚΝΜ (International SCI Core Data Set) (173) και την Διεθνή Στοιχειοθέτηση Δεδομένων μη τραυματικών Κακώσεων Νωτιαίου Μυελού (International Spinal Cord Injury Non-traumatic Data Sets) (174). Αυτές είναι οι βασικές στοιχειοθετήσεις δεδομένων για την προτυποποίηση βασικών επιδημιολογικών δεδομένων, περιλαμβανομένης της αιτιολογίας των ΚΝΜ, και της περιγραφής τους (175). Σχετική εδώ είναι η πρωτοβουλία της ISCoS για προτυποποίηση αρχείων που αναφέρουν διεθνείς επιδημιολογικές τάσεις ΚΝΜ. Η Κεντρική Στοιχειοθέτηση για KNM της Διεθνούς Ταξινόμησης Λειτουργικότητας, Αναπηρίας και Υγείας (ICF Core Sets for SCI) (Περιεκτική και Συνοπτική) είναι διεθνείς σειρές δεδομένων που μπορούν να χρησιμοποιηθούν σε κλινική και ερευνητική εργασία για τις KNM (177). Οι κεντρικές στοιχειοθετήσεις για μετά την οξεία φάση της βλάβης και τη μακροχρόνια φροντίδα αναπτύχθηκαν το 2010 χρησιμοποιώντας την Διεθνή Ταξινόμηση Λειτουργικότητας, Αναπηρίας και Υγείας (ICF) για περαιτέρω διασφάλιση συγκρισιμότητας με στατιστικές αναπηρίας άλλων πεδίων (177-179).
Προβληματισμοί και ανησυχίες για τα δεδομένα Δοθέντων των ελάχιστων στοιχείων για τις κακώσεις νωτιαίου μυελού, υπάρχει σημαντική ανάγκη συλλο-
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
γής περισσοτέρων στοιχείων σε παγκόσμια βάση. Υπάρχει επίσης η ανάγκη για βελτίωση της ποιότητας των στοιχείων. Στο ακόλουθο κεφάλαιο αναφέρονται κάποιοι κοινοί περιορισμοί στην συλλογή στοιχείων για ΚΝΜ.
Ορισμοί και προτυποποίηση των δεδομένων Υπάρχει ποικιλία ορισμών για ταυτοποίηση περιστατικών ως ΚΝΜ και των κριτηρίων ένταξης που επηρεάζουν την συγκρισιμότητα των στοιχείων των διαφόρων χώρων, εντός και μεταξύ των χωρών. Γενικοί ιατρικοί ορισμοί είναι κλινικά λειτουργικοί αλλά υστερούν αναλυτικότητας που χρειάζεται για την επιδημιολογία π.χ. "Κάκωση του νωτιαίου μυελού είναι ο τραυματισμός του νωτιαίου μυελού που προκαλεί απώλεια αισθητικού και κινητικού ελέγχου" (180). Ο κλινικός ορισμός ΚΝΜ που χρησιμοιείται από τα Κέντρα Ελέγχου Ασθενειών (CDC) των ΗΠΑ - "μία οξεία τραυματική κάκωση των νευρικών στοιχείων του νωτιαίου σωλήνα, που έχει ως αποτέλεσμα προσωρινό ή μόνιμο αισθητικό έλλειμμα, κινητικό έλλειμμα, ή δυσλειτουργία εντέρου/ουροδόχου κύστης" - περιλαμβάνει τραυματικά περιστατικά όπου συμμετέχει ένα εξωγενές συμβάν που πυροδοτεί την κάκωση, παρά μια ασθένεια ή ένας εκφυλισμός. Ως τέτοια εξαιρούνται ασθένειες μεσοσπονδυλίων δίσκων, σπονδυλικών κακώσεων με απουσία κακώσεων νωτιαίου μυελού, απόσπαση νευρικών ριζών και κακώσεις ριζών, νωτιαίων νεύρων και νεύρων εκτός του σπονδυλικού σωλήνα, καρκίνος, ασθένειες αγγειακής αιτιολογίας του νωτιαίου μυελού και άλλες ασθένειες του νωτιαίου μυελού μη τραυματικές (181).
(55, 184, 185), όπου τεχνητά θα μειώσει την επίπτωση και τα ποσοστά των θανατηφόρων περιπτώσεων. Ακόμα και σε δομές υψηλών προδιαγραφών, μπορεί να είναι δύσκολο να συλλεχθούν αξιόπιστες πληροφορίες για τον υπολογισμό επιπολασμού και επίπτωσης. Λίγες χώρες στον κόσμο έχουν μητρώα ΚΝΜ και τα υπάρχοντα έχουν ανεπαρκή κάλυψη. Ακόμα και σε χώρες με καλά στατιστικά για τις ΚΝΜ, τα στοιχεία έχουν την τάση να επικεντρώνονται σε ΤΚΝΜ και προκύπτει μία συγκεκριμένη ανεπάρκεια αναφοράς περιστατικών για ΜΤΚΝΜ (89). Ένα μητρώο για ΜΤΚΝΜ, όπως αυτό για ΤΚΝΜ, θα ήταν ακριβό, χρονοβόρο και μη πρακτικό γιατί άνθρωποι με ΜΤΚΝΜ - εξαιτίας της ποικίλης αιτιολογίας- θεραπεύονται και αποκαθίστανται σε πολλαπλούς χώρους φροντίδας και συχνά δεν λαμβάνουν εξειδικευμένες υπηρεσίες αποκατάστασης για ΚΝΜ (88).
Άλλα θέματα Έρευνες έχουν αποκαλύψει αρκετά προβλήματα που σχετίζονται με τα στοιχεία και τις αποδείξεις κακώσεων νωτιαίου μυελού. Αυτά περιλαμβάνουν τα παρακάτω θέματα. ■ Η διατήρηση ιατρικών αρχείων, που καταλήγουν σε ελλιπείς ή λανθασμένες πληροφορίες εντός προσωπικών αρχείων. Για παράδειγμα λανθασμένη κωδικοποίηση ICD μπορεί να υπερτονίσει περιστατικά κακώσεων νωτιαίου μυελού όταν κωδικοποιούνται εσφαλμένα κατάγματα της σπονδυλικής στήλης ή θλάσεις χωρίς νευρολογική συμπτωματολογία (20). ■ Τα περισσότερα δεδομένα σχετικά με την επίπτωση και τον επιπολασμό τους προέρχονται από μεμονωμένες, επικεντρωμένες στο εκάστοτε νοσοκομείο μελέτες οι οποίες δεν μπορούν να γενικευτούν στο υπόλοιπο της χώρας. ■ Καταλληλότητα των εργαλείων. Το ICD-10 δεν προσδιορίζει επακριβώς την ΚΝΜ αλλά χρησιμοποιεί αρκετούς κωδικούς για να αναγνωρίσει κατάγματα, τραυματικές ρήξεις, μετατοπίσεις σπονδύλων, και πλήρεις ή ατελείς βλάβες. Στην πράξη τα δεδομένα που συλλέγονται χρησιμοποιώντας τέτοιους κωδικούς είναι αναξιόπιστα για επιδημιολογικές έρευνες (187). ■ Ασταθής χρήση της ορολογίας π.χ. στην βιβλιο33
Ανεπάρκεια αναφορών Ανεπάρκεια αναφορών και για ΚΝΜ αλλά και για θανάτους από ΚΝΜ είναι ένα ουσιαστικό πρόβλημα σε χαμηλού και μεσαίου εισοδήματος χώρες (130,182,183). Οι ΤΚΝΜ, όπως και τα περισσότερα βαριά τραύματα, έχουν ένα υψηλό ποσοστό θνησιμότητας. Εάν οι υπηρεσίες επείγουσας περίθαλψης τραυμάτων δεν υποχρεούνται να αναφέρουν θάνατο μέσω του ICD κώδικα, ή λόγω φόρτου κατά την διάρκεια της επείγουσας εργασίας, αυτή η πληροφορία θα χαθεί
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
γραφία σχετική με την δισχιδή ράχη ■ Σχετικά μικρά μεγέθη δειγμάτων ■ Επιστημονικό βάρος των μεθόδων που χρησιμοποιούνται για τον προσδιορισμό επίπτωσης/επιπολασμού ■ Έλλειψη δεδομένων των αιτίων των ΚΝΜ
Συμπεράσματα και συστάσεις Χρησιμοποιώντας τα καλύτερα διαθέσιμα στοιχεία από όλο τον κόσμο, το κεφάλαιο αυτό παρέχει πληροφορίες σχετικές με την επίπτωση, επιπολασμό, τάσεις και κόστος των ΚΝΜ. Τα συμπεράσματα δίνουν προσωρινά την ποιότητα και την ανεπάρκεια των στοιχείων από κάποιες περιοχές του κόσμου. Τα αξιόπιστα αρχεία και οι αποδείξεις είναι σημαντικά για την περιγραφή του αριθμού των ανθρώπων που επηρεάζονται και την επίπτωση στην ζωή τους, εκτιμώντας τα αίτια, αναπτύσσοντας και αξιολογώντας παρεμβάσεις, παρέχοντας πληροφορίες στους υπεύθυνους πολιτικών αποφάσεων και τακτικών, αυξάνοντας την ευαισθητοποίηση. Χωρίς αξιόπιστες πληροφορίες, οι προτεραιότητες για πρόληψη, ιατρική και κοινωνική μέριμνα δεν μπορεί να αποφασιστούν ορθολογικά και ικανοποιητικά. Υπάρχει μια παγκόσμια ανάγκη για πιο σθεναρά και αξιόπιστα, συγκρίσιμα και περιεκτικά δεδομένα των ΚΝΜ ώστε να μπορούν να χρησιμοποιηθούν για την έρευνα, κλινική φροντίδα και τακτική, και συγκεκριμένα να είναι ικανά να περιλάβουν πλήρως τον πληθυσμό με ΚΝΜ για την παρακολούθηση εφαρμογής των διατάξεων της Συνθήκης των Δικαιωμάτων των Ατόμων με Αναπηρία (CRPD) σε επίπεδο χωρών. Με αυτό το πνεύμα οι ακόλουθες προτάσεις μπορούν να συνεισφέρουν στην βελτίωση της διαθεσιμότητας και της ποιότητας των δεδομένων για ΚΝΜ.
and Health - ICF) θα έπρεπε σταθερά να χρησιμοποιούνται για να παρέχουν ένα παγκόσμιο πλαίσιο για όλα τα στοιχεία υγείας και αναπηρίας. Τα Διεθνή Στοιχεία Δεδομένων ΚΝΜ (International SCI Data Sets), διατίθεται ελεύθερα από την ιστοσελίδα της ISCoS, συμβάλλοντας περαιτέρω στην συγκρισιμότητα δεδομένων ΚΝΜ. Οι χώρες μπορούν να: ■ Υιοθετήσουν επίσημα την Διεθνή Ταξινόμηση Εξωγενών Αιτιών Κακώσεων (ICECI) και την Διεθνή Ταξινόμηση Λειτουργικότητας, Αναπηρίας και Υγείας (ICF) ως ουσιαστικά πρότυπα για την συλλογή διεθνών δεδομένων σε όλες τις συλλογές στοιχείων υγείας. ■ Διασφαλίσουν ότι όλα τα δεδομένα για ΚΝΜ συλλέγονται χρησιμοποιώντας την ορολογία της ICECI και το μοντέλο αναπηρίας της ICF. ■ Διασφαλίσουν ότι όλα τα δεδομένα για ΚΝΜ συλλέγονται, χρησιμοποιώντας τουλάχιστον τη Διεθνή Κεντρική Στοιχειοθέτηση Δεδομένων ΚΝΜ.
Βελτίωση των διεθνών στατιστικών για τις ΚΝΜ Ο ιδανικότερος τρόπος συλλογής δεδομένων για τις ΚΝΜ είναι μέσω ενός μητρώου ΚΝΜ που συνδέει δεδομένα απευθείας από νοσοκομεία και άλλες περιοχές υπηρεσιών υγείας και συγκεντρώνει όλα τα δεδομένα σε μια τράπεζα δεδομένων η οποία διατηρείται τέλεια από μία κυβερνητική αρχή όπως το Διεθνές Στατιστικό Κέντρο Κακώσεων Νωτιαίου Μυελού (NSCISC) στις Η.Π.Α. Τα μητρώα παρέχουν μακροχρόνια δεδομένα ουσιαστικά για την καθορισμό τάσεων επίπτωσης τα οποία είναι σημαντικά για προγράμματα πρόληψης και άλλες τακτικές δράσεων σε ΚΝΜ και τις ανάγκες των ατόμων με ΚΝΜ. Σε απουσία μητρώου ΚΝΜ, οι ακόλουθες στρατηγικές θα βελτιώσουν σημαντικά την συλλογή δεδομένων. ■ Συλλογή διεθνώς συγκρίσιμων πληροφοριών για τις ΚΝΜ από το εντός της χώρας σύστημα συλλογής στοιχείων υγείας και αναπηρίας, διασφαλίζοντας ότι τα δεδομένα μπορούν να είναι αναλυτικά σε προτυποποιημένες κατηγορίες σχετικά για την ανάλυση τάσεων επίπτωσης και τουλάχιστον σύμφωνα με το φύλο, την ηλικία και την αιτιολογία.
Βελτίωση συγκρισιμότητας με τη χρήση διεθνών προτύπων συλλογής δεδομένων Όπως και το Διεθνές Πρότυπο για Νευρολογική Ταξινόμηση Κακώσεων Νωτιαίου Μυελού, έτσι και η Διεθνής Ταξινόμηση Εξωγενών Αιτιών Κακώσεων της Παγκόσμιας Οργάνωσης Υγείας (ICECI) και η Διεθνής Ταξινόμηση Λειτουργικότητας, Αναπηρίας και Υγείας (International Classification of Functioning, Disability 34
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
■ Δημιουργία Δεδομένων για ΚΝΜ διαθέσιμων σε ετήσιες αναφορές δημοσιευμένες στο Διαδίκτυο με έναν τέτοιο τρόπο αναζήτησης ώστε να είναι εύκολο να εντοπιστούν. ■ Ενθάρρυνση και στήριξη νοσοκομείων και άλλων υπηρεσιών υγειονομικής φροντίδας προκειμένου να συλλέξουν στοιχεία ΚΝΜ, με την μικρότερη επιπλέον δυνατή δαπάνη, μέσω διατήρησης κατάλληλων καταγραφών και την χρήση μορφοποίησης βασισμένης σε δεδομένα παγκόσμιων προδιαγραφών. ■ Να συμπεριληφθούν ερωτήσεις σχετικές με τις ΚΝΜ σε έρευνες υγιών και πληθυσμών με αναπηρία, ειδικές απογραφές, εθνικές έρευνες και έρευνες υγείας και γενικά κοινωνικές και οικονομικές έρευνες ■ Συλλογή ειδικών δεδομένων για ΚΝΜ μέσα από εξειδικευμένες μελέτες μετά από φυσικές καταστροφές όπως σεισμούς. ■ Χρηση των πηγών της ISCoS και άλλων εξειδικευμένων οργανισμών σχετικών με την ΚΝΜ για την διερεύνηση της πιθανότητας ανάπτυξης μίας πρότυπης μεθόδου καταγραφής για ΜΤΚΝΜ και ένα προοπτικό μητρώο ΚΝΜ, για ΤΚΝΜ και ΜΤΚΝΜ.
Ενθάρρυνση και βελτίωση της έρευνας για τις κακώσεις νωτιαίου μυελού Για να υπάρχουν ισχυρά τοπικά δεδομένα, οι χώρες σε όλες τις περιοχές πρέπει να ενθαρρύνουν και να επιδιώκουν τη βελτίωση της ποιότητας της έρευνας για
τις ΚΝΜ, συμπεριλαμβανομένων ειδικών μακροχρόνιων και ομαδικών μελετών. ■ Θέματα για τις ΚΝΜ θα έπρεπε να περιλαμβάνονται στο πρόγραμμα σπουδών της Ιατρικής και σχετικών επαγγελμάτων υγείας για να αυξηθεί η ενημέρωση σχετικά με τις ΚΝΜ και να ενθαρρυνθούν οι νέοι ερευνητές υγείας στο να στραφούν στην έρευνας για ΚΝΜ. ■ Οι ερευνητές πρέπει να ενθαρρυνθούν ώστε να συνεργαστούν με εταιρείες υπεύθυνες για προγράμματα πρόληψης, ενημερώνοντας για στρατηγικές πρόληψης με στοιχεία επίπτωσης και συμμετέχοντας στον έλεγχο και την εκτίμηση εκστρατειών πρόληψης. ■ Ένα περιεκτικό πλαίσιο θα έπρεπε να αναπτυχθεί ώστε να αναγνωρίζει και να προτυποποιεί άμεσα και έμμεσα το κόστος των ΚΝΜ. Αυτά τα στοιχεία δεδομένων θα έπρεπε έπειτα να ενσωματώνονται σε όργανα διοικητικής και εθνικής συλλογής δεδομένων ώστε να κάνουν καλύτερα κατανοητό το κοινωνικό κόστος των ΚΝΜ. ■ Εμπλοκή των ατόμων που άμεσα επηρεάζοντα από την ΚΝΜ στην επινόηση ερωτήσεων για μελέτες και άλλες στρατηγικές συλλογής δεδομένων, οι οποίες θα συγκεντρώνουν στοιχεία βιωματικής εμπειρίας από ΚΝΜ. Τα στοιχεία που συλλέγονται έτσι μπορούν να εναρμονιστούν με τα ήδη υπάρχοντα δεδομένα ΚΝΜ. ■ Η έρευνα για τη ΜΤΚΝΜ πρέπει να υποστηριχθεί προκειμένου να επεκταθεί η βάση αποδεικτικών στοιχείων με όρους συχνότητας, ποσοστών επιβίωσης, επιπολασμού, αιτιολογίας και στρατηγικών διαχείρισης της φροντίδας υγείας.
Βιβλιογραφία 1. 2. 3. 4. Noonan VK et al. Incidence and prevalence of spinal cord injury in Canada: a national perspective. Neuroepidemiology, 2012, 38:219226. doi: http://dx.doi.org/10.1159/000336014 PMID:22555590 Knútsdóttir S et al. Epidemiology of traumatic spinal cord injuries in Iceland from 1975 to 2009. Spinal Cord, 2012, 50:123- 126. doi: http://dx.doi.org/10.1038/sc.2011.105 PMID:21946442 Hagen EM et al. A 50-year follow-up of the incidence of traumatic spinal cord injuries in western Norway. Spinal Cord, 2010, 48:313318. doi: http://dx.doi.org/10.1038/sc.2009.133 PMID:19823192 Rahimi-Movaghar V et␣al. Prevalence of spinal cord injury in Tehran, Iran. The Journal of Spinal Cord Medicine, 2009, 32:428- 431. PMID:19777865
35
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
5. 6. 7. 8. 9.
10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27.
Dahlberg A et al. Prevalence of spinal cord injury in Helsinki. Spinal Cord, 2005, 43:47-50. doi: http://dx.doi.org/10.1038/ sj.sc.3101616 PMID:15520842 O’Connor PJ. Prevalence of spinal cord injury in Australia. Spinal Cord, 2005, 43:42-46. doi: http://dx.doi.org/10.1038/ sj.sc.3101666 PMID:15326472 New PW et␣al. Prevalence of non-traumatic spinal cord injury in Victoria, Australia.Spinal Ronen J et al. Survival after nontraumatic spinal cord lesions in Israel. Archives of Physical Medicine and Rehabilitation, 2004, 85:1499-1502. doi: http://dx.doi.org/10.1016/j.apmr.2003.11.015 PMID:15375824 Tugcu I et al. Epidemiologic data of the patients with spinal cord injury: seven years’ experience of a single center. Ulusal Travma Ve Acil Cerrahi Dergisi = Ulusal Travma Ve Acil Cerrahi Dergisi = Turkish Journal of Trauma & Emergency Surgery; TJTES, 2011, 17:533-538. doi: http://dx.doi.org/10.5505/tjtes.2011.95676 PMID:22290007 Costacurta MLG et al. Epidemiological profile of a pediatric population with acquired spinal cord injury from AACD: Sao Paulo/Brazil. Spinal Cord, 2010, 48:118-121. doi: http://dx.doi.org/10.1038/sc.2009.130 PMID:19806161 Garshick E et al. A prospective assessment of mortality in chronic spinal cord injury. Spinal Cord, 2005, 43:408-416. doi: http://dx.doi.org/10.1038/sj.sc.3101729 PMID:15711609 McCammon JR, Ethans K. Spinal cord injury in Manitoba: a provincial epidemiological study. The Journal of Spinal Cord Medicine, 2011, 34:6-10. doi: http://dx.doi.org/10.1179/107902610X12923394765733 PMID:21528620 Sabre L et al. High incidence of traumatic spinal cord injury in Estonia. Spinal Cord, 2012, 50:755-759. doi: http://dx.doi. org/10.1038/sc.2012.54 PMID:22565551 Pérez K et al. Incidence trends of traumatic spinal cord injury and traumatic brain injury in Spain, 2000–2009. Accident; Analysis and Prevention, 2012, 46:37-44. doi: http://dx.doi.org/10.1016/j.aap.2011.12.004 PMID:22310041 Albert T et al. Rehabilitation of spinal cord injury in France: a nationwide multicentre study of incidence and regional disparities. Spinal Cord, 2005, 43:357-365. doi: http://dx.doi.org/10.1038/sj.sc.3101717 PMID:15741980 O’Connor P. Incidence and patterns of spinal cord injury in Australia. Accident; Analysis and Prevention, 2002, 34:405-415. doi: http://dx.doi.org/10.1016/S0001-4575(01)00036-7 PMID:12067103 Ahoniemi E et al. Incidence of traumatic spinal cord injuries in Finland over a 30-year period. Spinal Cord, 2008, 46:781-784. doi: http://dx.doi.org/10.1038/sc.2008.53 PMID:18542095 O’Connor RJ, Murray PC. Review of spinal cord injuries in Ireland. Spinal Cord, 2006, 44:445-448. PMID:16304563 Quinones M et al. Traumatic spinal cord in Qatar: an epidemiological study. The Middle East Journal of Emergency Medicine, 2002, 2:1-5. van Asbeck FW, Post MW, Pangalila RF. An epidemiological description of spinal cord injuries in the Netherlands in 1994. Spinal Cord, 2000, 38:420-424. doi: http://dx.doi.org/10.1038/sj.sc.3101003 PMID:10962602 Li J et al. The epidemiological survey of acute traumatic spinal cord injury (ATSCI) of 2002 in Beijing municipality. Spinal Cord, 2011, 49:777-782. doi: http://dx.doi.org/10.1038/sc.2011.8 PMID:21383758 Ning GZ et al. Epidemiology of traumatic spinal cord injury in Tianjin, China. Spinal Cord, 2011, 49:386-390. doi: http:// dx.doi.org/10.1038/sc.2010.130 PMID:20921958 Lieutaud T, Ndiaye A, Laumon B, Chiron M. Spinal cord injuries sustained in road crashes are not on the decrease in France: A study based on epidemiological trends. Journal of Neurotrauma, 2012, 29:479-487. Augutis M, Levi R. Pediatric spinal cord injury in Sweden: incidence, etiology and outcome. Spinal Cord, 2003, 41:328-336. doi: http://dx.doi.org/10.1038/sj.sc.3101478 PMID:12746739 Puisto V et al. Incidence of spinal and spinal cord injuries and their surgical treatment in children and adolescents: a populationbased study. Spine, 2010, 35:104-107. doi: http://dx.doi.org/10.1097/BRS.0b013e3181c64423 PMID:20042961 Divanoglou A, Levi R. Incidence of traumatic spinal cord injury in Thessaloniki, Greece and Stockholm, Sweden: a prospective population-based study. Spinal Cord, 2009, 47:796-801. doi: http://dx.doi.org/10.1038/sc.2009.28 PMID:19350044 DeVivo MJ, Vogel LC. Epidemiology of spinal cord injury in children and adolescents. The Journal of Spinal Cord Medicine, 2004, 27:S4-S10. PMID:15503696
36
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
28. 29. 30. 31. 32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43. 44. 45. 46. 47. 48. 49. 50.
Vogel LC, Betz RR, Mulcahey MJ. Spinal cord injuries in children and adolescents. Handbook of Clinical Neurology, 2012, 109:131148. doi: http://dx.doi.org/10.1016/B978-0-444-52137-8.00008-5 PMID:23098710 Burke DA et al. Incidence rates and populations at risk for spinal cord injury: a regional study. Spinal Cord, 2001, 39:274-278. doi: http://dx.doi.org/10.1038/sj.sc.3101158 PMID:11438844 Lenehan B et al. The epidemiology of traumatic spinal cord injury in British Columbia, Canada. Spine, 2012, 37:321-329. doi: http://dx.doi.org/10.1097/BRS.0b013e31822e5ð8 PMID:22337075 Surkin J et al. Spinal cord injury in Mississippi: findings and evaluation, 1992–1994. Spine , 2000, 25:716-721. doi: http:// dx.doi.org/10.1097/00007632-200003150-00011 PMID:10752104 Pickett GE et$al. Epidemiology of traumatic spinal cord injury in Canada. Spine, 2006, 31:799-805. doi: http://dx.doi. org/10.1097/01.brs.0000207258.80129.03 PMID:16582854 Yang NP et al. The incidence and characterisation of hospitalised acute spinal trauma in Taiwan – a population-based study. Injury, 2008, 39:443-450. doi: http://dx.doi.org/10.1016/j.injury.2007.12.007 PMID:18321510 Middleton JW et al. Life expectancy after spinal cord injury: a 50-year study. Spinal Cord, 2012, 50:803-811. doi: http:// dx.doi.org/10.1038/sc.2012.55 PMID:22584284 National Spinal Cord Injury Statistical Center. Complete Public Version of the 2011 Annual Statistical Report for the Spinal Cord Injury Model System. Birmingham, Alabama, 2011. Hagen EM, Eide GE, Elgen I. Traumatic spinal cord injury among children and adolescents: a cohort study in western Norway. Spinal Cord, 2011, 49:981-985. doi: http://dx.doi.org/10.1038/sc.2011.42 PMID:21556012 Vitale MG et al. Epidemiology of pediatric spinal cord injury in the United States, years 1997 and 2000. Journal of Pediatric Orthopedics, 2006, 26:745-749. doi: http://dx.doi.org/10.1097/01.bpo.0000235400.49536.83 PMID:17065938 Olasode BJ et al. Traumatic spinal cord injuries in Ile-Ife, Nigeria, and its environs. Tropical Doctor, 2006, 36:181-182. doi: http://dx.doi.org/10.1258/004947506777978136 PMID:16884634 Umaru H, Ahidjo A. Pattern of spinal cord injury in Maiduguri, North Eastern Nigeria. Nigerian Journal of Medicine, 2005, 14:276278. PMID:16350696 Solagberu BA. Spinal cord injuries in Ilorin, Nigeria. West African Journal of Medicine, 2002, 21:230-232. PMID:12744575 Nwadinigwe CU, Iloabuchi TC, Nwabude IA. Traumatic spinal cord injuries (SCI): a study of 104 cases. Nigerian Journal of Medicine, 2004, 13:161-165. PMID:15293837 Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:11341137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 Obalum DC et al. Profile of spinal injuries in Lagos, Nigeria. Spinal Cord, 2009, 47:134-137. doi: http://dx.doi.org/10.1038/ sc.2008.93 PMID:18679400 Fielingsdorf K, Dunn RN. Cervical spine injury outcome - a review of 101 cases treated in a tertiary referral unit. South African Medical Journal, 2007, 97:203-207. PMID:17440669 Gosselin RA, Coppotelli C. A follow-up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 Dryden DM et al. Utilization of health services following spinal cord injury: a 6-year follow-up study. Spinal Cord, 2004, 42:513-525. doi: http://dx.doi.org/10.1038/sj.sc.3101629 PMID:15249928 Pirouzmand F. Epidemiological trends of spine and spinal cord injuries in the largest Canadian adult trauma center from 1986 to 2006. Journal of Neurosurgery. Spine, 2010, 12:131-140. doi: http://dx.doi.org/10.3171/2009.9.SPINE0943 PMID:20121346 Dryden DM et al. The epidemiology of traumatic spinal cord injury in Alberta, Canada. The Canadian Journal of Neurological Sciences, 2003, 30:113-121. PMID:12774950 Neumann CR, Brasil AV, Albers F. Risk factors for mortality in traumatic cervical spinal cord injury: Brazilian data. The Journal of Trauma, 2009, 67:67-70. doi: http://dx.doi.org/10.1097/TA.0b013e3181aa63f3 PMID:19590310 Leal-Filho MB et al. Spinal cord injury: epidemiological study of 386 cases with emphasis on those patients admitted more than four hours after the trauma. Arquivos de Neuro-Psiquiatria, 2008, 66:365-368. doi: http://dx.doi.org/10.1590/S0004282X2008000300016 PMID:18641873
37
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
51. 52. 53. 54. 55.
56. 57. 58. 59. 60.
61. 62. 63.
64. 65. 66. 67. 68. 69. 70. 71.
Brito LMO et al. Epidemiological evaluation of victims of spinal cord injury. Revista do Collégio Brasileiro de Cirugöes, 2011, 38:304309. doi: http://dx.doi.org/10.1590/S0100-69912011000500004 PMID:22124640 Collazo Álvarez H et$al. Traumatismo raquimedular toracico y lumbar. Rev Cubana Ortop Traumatol, 2002, 16:53-60. Alshahri SS et al. Traumatic spinal cord injury in Saudi Arabia: an epidemiological estimate from Riyadh. Spinal Cord, 2012, 50:882884. PMID:22777491 Raibulet T et al. Spinal cord injury patients in the physical medicine and rehabilitation hospital, Kuwait – a nine-year retrospective study. Kuwait Medical Journal, 2001, 33:211-215. Rathore FA et al. Spinal cord injury management and rehabilitation: highlights and shortcomings from the 2005 earth- quake in Pakistan. Archives of Physical Medicine and Rehabilitation, 2008, 89:579-585. doi: http://dx.doi.org/10.1016/j. apmr.2007.09.027 PMID:18295642 Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord, 2003, 41:303-309. doi: http:// dx.doi.org/10.1038/sj.sc.3101443 PMID:12714994 Lidal IB et al. Mortality after spinal cord injury in Norway. Journal of Rehabilitation Medicine, 2007, 39:145-151. doi: http:// dx.doi.org/10.2340/16501977-0017 PMID:17351697 Post MWM et al. Duration and functional outcome of spinal cord injury rehabilitation in the Netherlands. Journal of Rehabilitation Research and Development, 2005, 42 Suppl I:75-85. doi: http://dx.doi.org/10.1682/JRRD.2004.10.0133 PMID:16195965 Scivoletto G et al. Traumatic and non-traumatic spinal cord lesions: an Italian comparison of neurological and functional outcomes. Spinal Cord, 2011, 49:391-396. doi: http://dx.doi.org/10.1038/sc.2010.85 PMID:20603629 Pagliacci MC et al. An Italian survey of traumatic spinal cord injury. The Gruppo Italiano Studio Epidemiologico Mielolesioni Study. Archives of Physical Medicine and Rehabilitation, 2003, 84:1266-1275. doi: http://dx.doi.org/10.1016/S0003- 9993(03)00234-X PMID:13680560 Catz A et al. Survival following spinal cord injury in Israel. Spinal Cord, 2002, 40:595-598. doi: http://dx.doi.org/10.1038/ sj.sc.3101391 PMID:12411967 Cosar SN et al. Demographic characteristics after traumatic and non-traumatic spinal cord injury: a retrospective compari- son study. Spinal Cord, 2010, 48:862-866. doi: http://dx.doi.org/10.1038/sc.2010.49 PMID:20440301 Gur A et al. Characteristics of traumatic spinal cord injuries in south-eastern Anatolia, Turkey: a comparative approach to 10 years’ experience. International Journal of Rehabilitation Research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue Internationale de Recherches de Readaptation, 2005, 28:57-62. doi: http://dx.doi.org/10.1097/00004356-200503000- 00008 PMID:15729098 Ones K et al. Comparison of functional results in non-traumatic and traumatic spinal cord injury. Disability and Rehabilitation, 2007, 29:1185-1191. doi: http://dx.doi.org/10.1080/09638280600902661 PMID:17653992 Karacan I et al. Traumatic spinal cord injuries in Turkey: a nation-wide epidemiological study. Spinal Cord, 2000, 38:697-701. doi: http://dx.doi.org/10.1038/sj.sc.3101064 PMID:11114778 Seguin P et al. Impact of age on mortality in patients with acute traumatic spinal cord injury requiring intensive care. Annales Francaises d’Anesthesie et de Reanimation, 2012, 31:196-202. doi: http://dx.doi.org/10.1016/j.annfar.2011.10.019 PMID:22204755 Van Den Berg M et al. Incidence of traumatic spinal cord injury in Aragon, Spain (1972–2008). Journal of Neurotrauma, 2011, 28:469-477. doi: http://dx.doi.org/10.1089/neu.2010.1608 PMID:21190391 Islam MS, Hafez MA, Akter M. Characterization of spinal cord lesion in patients attending a specialized rehabilitation center in Bangladesh. Spinal Cord, 2011, 49:783-786. doi: http://dx.doi.org/10.1038/sc.2011.36 PMID:21502957 Singh R et al. Traumatic spinal cord injuries in Haryana: An epidemiological study. Indian Journal of Community Medicine, 2003, 28:184-186. Pandey V et al. Care of post-traumatic spinal cord injury patients in India: an analysis. Indian Journal of Orthopaedics, 2007, 41:295299. doi: http://dx.doi.org/10.4103/0019-5413.36990 PMID:21139781 Chhabra HS, Arora M. Demographic profile of traumatic spinal cord injuries admitted at Indian Spinal Injuries Centre with special emphasis on mode of injury: a retrospective study. Spinal Cord, 2012, 50:745-754. doi: http://dx.doi.org/10.1038/ sc.2012.45 PMID:22584285
38
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
72. 73. 74. 75. 76. 77.
78. 79. 80.
81. 82. 83. 84.
85. 86. 87.
88. 89. 90. 91. 92.
Kuptniratsaikul V. Epidemiology of spinal cord injuries: a study in the spinal unit, Siriraj Hospital, Thailand. Journal of the Medical Association of Thailand, 2003, 86:1116-1121. PMID:14971518 Lee BB et al. The global map for traumatic spinal cord injury epidemiology: update 2011, global incidence rate. Spinal Cord, 2013,In press PMID:23439068 Yang JY et al. Epidemiology of the spinal cord and cauda equine injury in Korea-multicenter study. J Korean Soc Spine Surg, 2011, 18:83-90. doi: http://dx.doi.org/10.4184/jkss.2011.18.3.83 Middleton PM. The pre-hospital epidemiology and management of spinal cord injuries in New South Wales: 2004–2008. Injury, 2012, 43:480-485. doi: http://dx.doi.org/10.1016/j.injury.2011.12.010 PMID:22244002 Chan SCC, Chan APS. Rehabilitation outcomes following traumatic spinal cord injury in a tertiary spinal cord injury centre: a comparison with an international standard. Spinal Cord, 2005, 43:489-498. doi: http://dx.doi.org/10.1038/ sj.sc.3101743 PMID:15824758 Wu JC et al. Eðects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of Neurotrauma, 2012, 29:889-897. doi: http:// dx.doi.org/10.1089/neu.2011.1777 PMID:21510819 Wang HF et al. Epidemiological features of traumatic spinal cord injury in Anhui Province, China. Spinal Cord, 2013, 51:20- 22. doi: http://dx.doi.org/10.1038/sc.2012.92 PMID:22945750 Wu Q et al. Epidemiology of traumatic cervical spinal cord injury in Tianjin, China. Spinal Cord, 2012, 50:740-744. doi: http:// dx.doi.org/10.1038/sc.2012.42 PMID:22525311 Feng HY et al. Epidemiological profile of 239 traumatic spinal cord injury cases over a period of 12 years in Tiajin,China. The Journal of Spinal Cord Medicine, 2011, 34:388-394. www.maneypublishing.com/journals/scm and www.ingentaconnect.com/content/ maney/scm doi: http://dx.doi.org/10.1179/2045772311Y.0000000017 PMID:21903012 Lakhey S et al. Aetioepidemiological profile of spinal injury patients in eastern Nepal. Tropical Doctor, 2005, 35:231-233. doi: http://dx.doi.org/10.1258/004947505774938756 PMID:16354480 DeVivo MJ, Chen Y. Trends in new injuries prevalent cases, and aging with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:332-338. doi: http://dx.doi.org/10.1016/j.apmr.2010.08.031 PMID:21353817 Lee JH et al. Characteristics of pediatric-onset spinal cord injury. Pediatrics International, 2009, 51:254-257. doi: http:// dx.doi.org/10.1111/j.1442-200X.2008.02684.x PMID:19405927 Lhéritier K et al. Survival of tetraplegic spinal cord injured persons after the first admission of a rehabilitation center and prognosis factors: a multicentre study of 697 subjects in French centers. Revue d’Epidemiologie et de Sante Publique, 2001, 49:449-458. PMID:11845094 Celani MG et al. Spinal cord injury in Italy: a multicentre retrospective study. Archives of Physical Medicine and Rehabilitation, 2001, 82:589-596. doi: http://dx.doi.org/10.1053/apmr.2001.21948 PMID:11346833 Martin BW, Dykes E, Lecky FE. Patterns and risks in spinal trauma. Archives of Disease in Childhood, 2004, 89:860-865. doi: http://dx.doi.org/10.1136/adc.2003.029223 PMID:15321867 New PW, Cripps RA, Bonne Lee B. Global maps of non-traumatic spinal cord injury epidemiology: towards a living data repository. Spinal Cord, 2013, in print http://dx.doi.org/10.1038/sc.2012.165 doi: http://dx.doi.org/10.1038/sc.2012.165 PMID:23318556 New PW. Non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? Australian Health Review, 2006, 30:353-361. doi: http://dx.doi.org/10.1071/AH060353 PMID:16879094 New PW, Sundararajan V. Incidence of non-traumatic spinal cord injury in Victoria, Australia: a population- based study and literature review. Spinal Cord, 2008, 46:406-411. doi: http://dx.doi.org/10.1038/sj.sc.3102152 PMID:18071356 van den Berg ME et$al. Incidence of nontraumatic spinal cord injury: a Spanish cohort study (1972–2008). Archives of Physical Medicine and Rehabilitation, 2012, 93:325-331. doi: http://dx.doi.org/10.1016/j.apmr.2011.08.027 PMID:22289245 Centers for Disease Control and Prevention. Racial/ethnic diðerences in the birth prevalence of spina bifida – United States, 1995. MMWR Morb Mortal Wkly, 2009. Rep, 2005, 57:1409-1413. Tarqui Mamani C et al. Incidencia de los defectos del tubo neural en el Instituto Nacional Materno Perinatal de Lima, Incidence of neural tube defects in the National Maternal-Perinatal Institute of Lima. Rev Chil Salud Pública, 2009, 13:82-89.
39
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
93. 94. 95. 96. 97. 98. 99. 100. 101. 102. 103. 104. 105. 106.
107.
108.
109.
110. 111. 112. 113.
Msamati BC, Igbigbi PS, Chisi JE. The incidence of cleft lip, cleft palate, hydrocephalus and spina bifida at Queen Elizabeth Central Hospital, Blantyre, Malawi. The Central African Journal of Medicine, 2000, 46:292-296. PMID:12002118 Murshid WR. Spina bifida in Saudi Arabia: is consanguinity among the parents a risk factor? Pediatric Neurosurgery, 2000, 32:1012. doi: http://dx.doi.org/10.1159/000028890 PMID:10765132 Onrat ST et al. Incidence of neural tube defects in Afyonkarahisar, Western Turkey. Genetics and Molecular Research, 2009, 8:154161. doi: http://dx.doi.org/10.4238/vol8-1gmr552 PMID:19283682 Orioli IM et al. Eðects of folic acid fortification on spina bifida prevalence in Brazil. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:831-835. doi: http://dx.doi.org/10.1002/bdra.20830 PMID:21630426 Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the eðect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 Ahuka OL et al. Congenital malformations in the North-Eastern Democratic Republic of Congo during Civil War. East African Medical Journal, 2006, 83:95-99. doi: http://dx.doi.org/10.4314/eamj.v83i2.9395 PMID:16708881 Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 Amini H et al. The Swedish Birth Defects Registry: ascertainment and incidence of spina bifida and cleft lip/palate. Acta Obstetricia et Gynecologica Scandinavica, 2009, 88:654-659. doi: http://dx.doi.org/10.1080/00016340902934696 PMID:19412801 Barboza Argüello ML, Umaña Solís LM. Impact of the fortification of food with folic acid on neural tube defects in Costa Rica. Revista Panamericana de Salud Pública, 2011, 30:1-6. PMID:22159644 Sípek A, Gregor V, Horacek J. Birth defects in the Czech Republic in the period 1961–2005 – mean incidences. Ceska Gynekologie, 2007, 72:185-191. PMID:17616072 Hernández-Herrera RJ, Alcala-Galvan LG, Flores-Santos R. Neural defect prevalence in 248,352 consecutive newborns. Revista Medica del Instituto Mexicano del Seguro Social, 2008, 46:201-204. PMID:19133193 Boyd PA et al. Monitoring the prenatal detection of structural fetal congenital anomalies in England and Wales: register- based study. Journal of Medical Screening, 2011, 18:2-7. doi: http://dx.doi.org/10.1258/jms.2011.010139 PMID:21536809 De Wals PF et al. Reduction in neural-tube defects after folic acid fortification in Canada. The New England Journal of Medicine, 2007, 357:135-142. doi: http://dx.doi.org/10.1056/NEJMoa067103 PMID:17625125 López-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http:// dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 Njamnshi AK et al. Neural tube defects are rare among black Americans but not in sub-Saharan black Africans: the case of Yaounde – Cameroon. Journal of the Neurological Sciences, 2008, 270:13-17. doi: http://dx.doi.org/10.1016/j. jns.2008.01.010 PMID:18295800 Owen TJ, Halliday JL, Sone CA. Neural tube defects in Victoria, Australia: potential contributing factors and public health implications. Australian and New Zealand Journal of Public Health, 2000, 24:584-589. doi: http://dx.doi.org/10.1111/j.1467842X.2000.tb00521.x PMID:11215005 Sayed AR et$al. Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2008, 82:211-216. doi: http://dx.doi. org/10.1002/bdra.20442 PMID:18338391 Golalipour MJ et al. Epidemiology of neural tube defects in northern Iran, 1998–2003. Eastern Mediterranean Health Journal, 2007, 13:560-566. PMID:17687828 FarhudD,HadaviV,SadighiH.EpidemiologyofneuraltubedefectsintheworldandIran.IranianJournalofPublicHealth, 2000, 29:83-90. GarcíaLópezEetal.PrevalenceofneuraltubedefectsinAsturias(Spain):impactofprenataldiagnosis.GacetaSanitaria, 2009, 23:506-511. doi: http://dx.doi.org/10.1016/j.gaceta.2009.01.011 PMID:19406531 SanchisCalvoA,Martinez-FriasM.Clinicalepidemiologicalstudyofneuraltubedefectsclassifiedaccordingtothefive sites of closure. Anales Espanoles de Pediatria, 2001, 54:165-173. doi: http://dx.doi.org/10.1016/S1695-4033(01)78673-0 PMID:11181213
40
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
114. Liu J et al. Prevalence of neural tube defects in economically and socially deprived area of China. Child’s Nervous System, 2007, 23:1119-1124. doi: http://dx.doi.org/10.1007/s00381-007-0344-3 PMID:17450368 115. PeiLJet al.Theepidemiologyofneuraltubedefectsinhigh-prevalenceandlow-prevalenceareasofChina.ZhonghuaLiu Xing Bing Xue Za Zhi, 2003, 24:465-470. PMID:12848911 116. Li Z et al. Prevalence of major external birth defects in high and low risk areas in China, 2003. Zhonghua Liu Xing Bing Xue Za Zhi, 2005, 26:252-257. PMID:15941530 117. BowerC,D’AntoineH,StanleyFJ.NeuraltubedefectsinAustralia:trendsinencephalocelesandotherneuraltubedefects before and after promotion of folic acid supplementation and voluntary food fortification. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2009, 85:269-273. doi: http://dx.doi.org/10.1002/bdra.20536 PMID:19180646 118. LiZ et al.Extremelyhighprevalenceofneuraltubedefectsina4-countyareainShanxiProvince,China.BirthDefectsResearch. Part A, Clinical and Molecular Teratology, 2006, 76:237-240. doi: http://dx.doi.org/10.1002/bdra.20248 PMID:16575897 119. NikkiläA,RydhstromH,KallenB.TheincidenceofspinabifidainSweden1973–2003:theeðectofprenataldiagnosis. European Journal of Public Health, 2006, 16:660-662. doi: http://dx.doi.org/10.1093/eurpub/ckl053 PMID:16672253 120. Petrova JG, Vaktskjold A. The incidence of neural tube defects in Norway and the Arkhangelskaja Oblast in Russia and the association with maternal age. Acta Obstetricia et Gynecologica Scandinavica, 2009, 88:667-672. doi: http://dx.doi. org/10.1080/00016340902898008 PMID:19353336 121. Rankin J et al. The changing prevalence of neural tube defects: a population-based study in the north of England, 1984–96. Northern Congenital Abnormality Survey Steering Group. Paediatric and Perinatal Epidemiology, 2000, 14:104- 110. doi: http://dx.doi.org/10.1046/j.1365-3016.2000.00246.x PMID:10791652 122. Catz A. Recovery of neurologic function following nontraumatic spinal cord lesions in Israel. Spine (Phila Pa 1976). 2004 Oct 15;29(20):2278–2282; discussion 2283. 123. Werhagen L, Hultling C, Molander C. The prevalence of neuropathic pain after non-traumatic spinal cord lesion. Spinal Cord, 2007, 45:609-615. doi: http://dx.doi.org/10.1038/sj.sc.3102000 PMID:17160075 124. Osterthun R, Post MWM, van Asbeck FWA. Characteristics, length of stay and functional outcome of patients with spinal cord injury in Dutch and Flemish rehabilitation centers. Spinal Cord, 2009, 47:339-344. doi: http://dx.doi.org/10.1038/ sc.2008.127 PMID:19002154 125. Gupta A et al. Non-traumatic spinal cord lesions: epidemiology, complications, neurological and functional outcome of rehabilitation. Spinal Cord, 2009, 47:307-311. doi: http://dx.doi.org/10.1038/sc.2008.123 PMID:18936767 126. Quintana-Gonzales A et al. Nontraumatic spinal cord injury: etiology, demography and clinics. Rev Peru Med Exp Salud Publica, 2011, 28:633-638. PMID:22241260 127. AhoniemiE,PohjolainenT,KautiainenH.SurvivalafterspinalcordinjuryinFinland.JournalofRehabilitationMedicine, 2011, 43:481-485. doi: http://dx.doi.org/10.2340/16501977-0812 PMID:21533327 128. Sabre L et al. Traumatic spinal cord injury in two European countries: why the diðerences? European Journal of Neurology, 2013, 20:293-299. doi: http://dx.doi.org/10.1111/j.1468-1331.2012.03845.x PMID:22891855 129. O’Connor PJ. Survival after spinal cord injury in Australia. Archives of Physical Medicine and Rehabilitation, 2005, 86:37-47. PMID:15640987 130. Hagen EM et al. Traumatic spinal cord injuries – incidence, mechanisms and course. Tidsskrift for Den Norske Laegeforening, 2012, 132:831-837. doi: http://dx.doi.org/10.4045/tidsskr.10.0859 PMID:22511097 131. StraussDJetal.Trendsinlifeexpectancyafterspinalcordinjury.ArchivesofPhysicalMedicineandRehabilitation,2006, 87:1079-1085. doi: http://dx.doi.org/10.1016/j.apmr.2006.04.022 PMID:16876553 132. Saunders LL et al. Traumatic spinal cord injury mortality, 1981–1998. The Journal of Trauma, 2009, 66:184-190. doi: http:// dx.doi.org/10.1097/TA.0b013e31815644e5 PMID:19131823 133. Soden RJ et al. Causes of death after spinal cord injury. Spinal Cord, 2000, 38:604-610. doi: http://dx.doi.org/10.1038/ sj.sc.3101080 PMID:11093321
41
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
134. NationalSpinalCordInjuryStatisticalCenter.Birmingham,AlabamaSpinalCordInjuryFactsandFiguresataGlance,February2012 (https://www.nscisc.uab.edu/PublicDocuments/fact_figures_docs/Facts%202012%20Feb%20Final.pdf, accessed 9 January 2013). 135. Hagen EM et al. Mortality after traumatic spinal cord injury: 50 years of follow-up. Journal of Neurology, Neurosurgery, and Psychiatry, 2010, 81:368-373. doi: http://dx.doi.org/10.1136/jnnp.2009.178798 PMID:19726408 136. Rathore MFA. 2013. Spinal Cord Injuries in the Developing World. In: JH Stone, M Blouin, eds. International encyclopedia of rehabilitation. Available online: http://cirrie.buðalo.edu/encyclopedia/en/article/141/ 137. CourisCMetal.CharacteristicsofadultswithincidenttraumaticspinalcordinjuryinOntario,Canada.SpinalCord,2010, 48:39-44. doi: http://dx.doi.org/10.1038/sc.2009.77 PMID:19546873 138. Fassett DR et al. Mortality rates in geriatric patients with spinal cord injuries. Journal of Neurosurgery, 2007, 7:277-281. PMID:17877260 139. Demetriades D et al. The eðect of trauma center designation and trauma volume on outcome in specific severe injuries. Annals of Surgery, 2005, 242:512-517. PMID:16192811 140. Harvey C et al. New estimates of the direct costs of traumatic spinal cord injuries: results of a nationwide survey. Paraplegia, 1992, 30:834-850. doi: http://dx.doi.org/10.1038/sc.1992.160 PMID:1287537 141. JohnsonRL,BrooksCA,WhiteneckGG.Costoftraumaticspinalcordinjuryinapopulation-basedregistry.SpinalCord, 1996, 34:470-480. doi: http://dx.doi.org/10.1038/sc.1996.81 PMID:8856854 142. Bötel U et al. The cost of ventilator-dependent spinal cord injuries-patients in the hospital and at home. Spinal Cord, 1997, 35:4042. doi: http://dx.doi.org/10.1038/sj.sc.3100345 PMID:9025219 143. DeVivo MJ. Causes and costs of spinal cord injury in the United States. Spinal Cord, 1997, 35:809-813. doi: http://dx.doi. org/10.1038/sj.sc.3100501 PMID:9429259 144. Dryden DM et al. Direct health care costs after traumatic spinal cord injury. The Journal of Trauma, 2005, 59:443-449. PMID:16294090 145. Mak KS et$al. Incidence and treatment patterns in hospitalizations for malignant spinal cord compression in the United States, 1998– 2006. International Journal of Radiation Oncology, Biology, Physics, 2011, 80:824-831. doi: http://dx.doi. org/10.1016/j.ijrobp.2010.03.022 PMID:20630663 146. New PW, Jackson T. The costs and adverse events associated with hospitalization of patients with spinal cord injury in Victoria, Australia. Spine, 2010, 35:796-802. PMID:20228702 147. GreenwaldBD et al.Gender-relateddiðerencesinacuterehabilitationlengthsofstay,charges,andfunctionaloutcomes for a matched sample with spinal cord injury: a multicenter investigation. Archives of Physical Medicine and Rehabilitation, 2001, 82:1181-1187. doi: http://dx.doi.org/10.1053/apmr.2001.24891 PMID:11552188 148. St. Andre JR et al. A comparison of costs and health care utilization for veterans with traumatic and nontraumatic spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:27-42. doi: http://dx.doi.org/10.1310/sci1604-27 149. Sundance PD et al. Systematic care management: clinical and economic analysis of a national sample of patients with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2004, 10:17-34. doi: http://dx.doi. org/10.1310/2E3M-X01K-786H-V8FC 150. Baaj AA et al. Health care burden of cervical spine fractures in the United States: analysis of a nationwide database over a 10-year period. Journal of Neurosurgery. Spine, 2010, 13:61-66. doi: http://dx.doi.org/10.3171/2010.3.SPINE09530 PMID:20594019 151. DeVivo MJ et al. Costs of care following spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:1-9. doi: http://dx.doi.org/10.1310/sci1604-1 152. Cao Y et al. Lifetime direct costs after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:10-16. doi: http://dx.doi.org/10.1310/sci1604-10 153. National Spinal Cord Injury Statistical Center. Birmingham, Alabama Spinal Cord Injury Facts and Figures at a Glance, February 2013 (https://www.nscisc.uab.edu/PublicDocuments/fact_figures_docs/Facts%202013.pdf, accessed 23 Mai 2013). Based on data from Economic Impact of SCI published in Topics in Spinal Cord Injury Rehabilitation, 2011, 16(4).
42
Κεφάλαιο 2
Μια σφαιρική εικόνα για την Κάκωση Νωτιαίου Μυελού
154. Access Economics for the Victorian Neurotrauma Initiative. The economic cost of spinal cord injury and traumaticbrain injury in Australia. 2009 (http://www.tac.vic.gov.au/about-the-tac/our-organisation/research/tac-neurotrauma- research/vni/the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia.pdf?bcsi_scan_c7a381ba8bd8a412= Ll1KKoXsl2UO97L0ZcjjMUATHXYjAAAAPRI4Bw==&bcsi_scan_filename=the20eco-nomic20cost20of20spinal20cord20injury 20and20traumatic20brain20injury20in20australia.pdf, accessed 9 January 2013) Based on Transport Accident Commission (TAC) data on the costs for healthcare, long term care, equipment and modifica- tions, administration and compensation to families for TBI and SCI patients in Victoria for pay years 2004–2008. 155. Cassell CH et al. Health care expenditures among children with and those without spina bifida enrolled in Medicaid in North Carolina. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:1019-1027. doi: http://dx.doi. org/10.1002/bdra.22864 PMID:22021073 156. Bowkett B, Deverall E. Paediatric spina bifida inpatient treatment at Wellington Regional Hospital: a cost analysis of sequential patients. The New Zealand Medical Journal, 2012, 125:13-18. PMID:22426607 157. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 158. Munce SE et al. Direct costs of adult traumatic spinal cord injury in Ontario. Spinal Cord, 2013, 51:64-69. doi: http://dx.doi. org/10.1038/sc.2012.81 PMID:22801189 159. Haeusler JM et al. Pilot study on the comprehensive economic costs of major trauma: consequential costs are well in excess of medical costs. The Journal of Trauma, 2006, 61:723-731. PMID:16967014 160. Noonan VK et$al. The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry. Spinal Cord, 2012, 50:22- 27. doi: http://dx.doi.org/10.1038/sc.2011.109 PMID:22042297 161. Rick Hansen Institute Spinal Cord Injury Registry. web site (http://rickhansenregistry.org, accessed 17 March 2013). 162. O’Connor PJ. Development and utilisation of the Australian spinal cord injury register. Spinal Cord, 2000, 38:597-603. doi: http://dx.doi.org/10.1038/sj.sc.3101048 PMID:11093320 163. Stover SL et al. History, implementation, and current status of the national spinal cord injury database. Archives of Physical Medicine and Rehabilitation, 1999, 80:1365-1371. doi: http://dx.doi.org/10.1016/S0003-9993(99)90246-0 PMID:10569429 164. DeVivo MJ, Go BK, Jackson AB. Overview of the National Spinal Cord Injury Statistical Center database. The Journal of Spinal Cord Medicine, 2002, 25:335-338. PMID:12482178 165. World Health Organization. International Classification of Diseases, 2010, web site (http://www.who.int/classifications/icd/ en/, accessed 18 March 2012). 166. OECD, World Health Organization, Eurostat. A system of health accounts, OECD Publishing, 2011 (http://www.oecd-ilibrary. org/social-issues-migration-health/a-system-of-health-accounts_9789264116016-en, accessed 17 May 2013). 167. MarinoRJetal.Internationalstandardsforneurologicalclassificationofspinalcordinjury.TheJournalofSpinalCord Medicine, 2003, 26 Suppl 1:S50-S56. PMID:16296564 168. Waring WP et al. 2009 review and revisions of the International Standards for the Neurological Classification of Spinal Cord Injury. The Journal of Spinal Cord Medicine, 2010, 33:346-352. PMID:21061894 169. Kirshblum SC et al. International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 2011, 34:535-546. doi: http://dx.doi.org/10.1179/204577211X13207446293695 PMID:22330108 170. Kirshblum SC et al. Reference for the 2011 revision of the International Standards for Neurological Classification of Spinal Cord Injury. The Journal of Spinal Cord Medicine, 2011, 34:547-554. doi: http://dx.doi.org/10.1179/1079026 11X13186000420242 PMID:22330109 171. Biering-Sørensen F et al. International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi. org/10.1038/sj.sc.3101930 PMID:16955072 172. International SCI Data Sets. International Spinal Cord Society (ISCoS) (http://www.iscos.org.uk/international-sci-data-sets, accessed 22 May 2013).
43
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
173. DeVivo MJ. International Spinal Cord Injuury Core Data Set. Spinal Cord, 2006, 44:535-540. 174. New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord, advance online publication, January 2013. doi: 10.1038/sc.2012.160. doi: http://dx.doi.org/10.1038/sc.2012.160 175. DeVivo MJ et al. Standardization of data analysis and reporting of results from the International Spinal Cord Injury Core Data Set. Spinal Cord, 2011, 49:596-599. doi: http://dx.doi.org/10.1038/sc.2010.172 PMID:21135863 176. Global Mapping of Spinal Cord Injury (SCI) Epidemiology. Towards a living data repository. The International Spinal Cord Society, web site (http://www.iscos.org.uk/sci-global-mapping, accessed 4 June, 2013). 177. Biering-SørensenFetal.DevelopingcoresetsforpersonswithspinalcordinjuriesbasedontheInternationalClassification of Functioning, Disability and Health as a way to specify functioning. Spinal Cord, 2006, 44:541-546. doi: http://dx.doi. org/10.1038/sj.sc.3101918 PMID:16955074 178. Cieza A et al. ICF Core Sets for individuals with spinal cord injury in the long-term context. Spinal Cord, 2010, 48:305-312. doi: http://dx.doi.org/10.1038/sc.2009.183 PMID:20065984 179. Kirchberger I et al. ICF Core Sets for individuals with spinal cord injury in the early post-acute context. Spinal Cord, 2010, 48:297304. doi: http://dx.doi.org/10.1038/sc.2009.128 PMID:19786973 180. Gale Encyclopedia of Medicine. 4th ed. Farmington Hills, Michigan: Gale Cengage Learning Inc; 2011. 181. Centers for Disease Control and Prevention. Case definition of spinal cord injury. 1990 (http://wwwn.cdc.gov/nndss/script/ casedef.aspx?CondYrID=854&DatePub=1/1/1990%2012:00:00%20AM, accessed 17.5.2013). 182. Ackery A, Tator C, Krassioukov A. A global perspective on spinal cord injury epidemiology. Journal of Neurotrauma, 2004, 21:13551370. doi: http://dx.doi.org/10.1089/neu.2004.21.1355 PMID:15672627 183. Draulans N et al. Etiology of spinal cord injuries in sub-Saharan Africa. Spinal Cord, 2011, 49:1148-1154. doi: http://dx.doi. org/10.1038/sc.2011.93 PMID:21987062 184. Solagberu BA et al. Pre-hospital care in Nigeria: a country without emergency medical services. Nigerian Journal of Clinical Practice, 2009, 12:29-33. PMID:19562917 185. Afuwape OO et al. Preventable trauma deaths in Ibadan: a comparison of revised trauma score and panel review. West African Journal of Medicine, 2011, 30:19-23. doi: http://dx.doi.org/10.4314/wajm.v30i1.69879 PMID:21863584 186. Thanni LO, Kehinde OA. Trauma at a Nigerian teaching hospital: pattern and documentation of presentation. African Health Sciences, 2006, 6:104-107. PMID:16916301 187. NoonanVKetal.Thevalidityofadministrativedatatoclassifypatientswithspinalcolumnandcordinjuries.Journalof Neurotrauma, 2013, 30:173-180. doi: http://dx.doi.org/10.1089/neu.2012.2441 PMID:23002989
44
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
45
"Είμαι ένας άνδρας 52 ετών με μια ατελή αλλά σοβαρή κάκωση νωτιαίου μυελού (Α4). Η κάκωση νωτιαίου μυελού προκλήθηκε από ένα τροχαίο ατύχημα το 1973, όταν ήμουν 16 ετών. Εγώ έφταιγα για το ατύχημα. Οδηγούσα με υπερβολική ταχύτητα, χωρίς δίπλωμα οδήγησης και λίγο πιωμένος. Μπορώ να κινώ τα μπράτσα μου και να χρησιμοποιώ λίγω τα χέρια μου. Μπορώ να στέκομαι, αλλά όχι να περπατώ. Δε μπορώ να πληκτρολογήσω στον υπολογιστή, αλλά μπορώ να χρησιμοποιώ προγράμματα υπαγόρευσης ωστε να γράφω στον υπολογιστή. Για να μετακινούμαι χρησιμοποιώ το ηλεκτροκίνητο αμαξίδιό μου. Για τις καθημερινές μου ανάγκες, έχω σε μόνιμη βάση προσωπικό βοηθό". (Stig, Δανία) "Μεταξύ των περιόδων σποράς του ρυζιού, δούλευα σαν χτίστης στο Ανόϊ, για να έχω επιπλέον εισόδημα, έτσι ώστε να μπορέσω να αγοράσω ένα καλό απόθεμα για την περίοδο σποράς, και για να μπορέσω να καλύψω τις ανάγκες των παιδιών μου για τη μόρφωση και το μέλλον τους. Μιά μέρα στην πόλη κυριολεκτικά κατέρρευσε ολόκληρη η ζωή μου όταν έχασα τον έλεγχο καθώς κουβαλούσα ένα φορτίο τούβλων πάνω σε μια βρεγμένη σανίδα". (Anonymous, Βιετνάμ) "Έπεσα από την οροφή του σπιτιού μου το 1976 με αποτέλεσμα να υποστώ κάκωση νωτιαίου μυελού (Α5-6), η οποία με άφησε ανίκανο να κουνώ τα πόδια μου και περιόρισε τον έλεγχο των δακτύλων και των χεριών μου μέχρι το μπράτσο". (David, ΗΠΑ) "Το 1998, δέχτηκα έναν πυροβολισμό ο οποίος μου προκάλεσε κάκωση νωτιαίου μυελού στο επίπεδο Θ6-7". (Robert, Ουγκάντα) "Τραυματίστηκα τον Οκτώβριο του 1997 στη διάρκεια θαλάσσιων σπορ στο Noosa Heads, στο Queensland της Αυστραλίας. Σαν συνέπεια της κάκωσης του νωτιαίου μυελού μου (Α4-5) μπορώ μόνο να κουνώ το κεφάλι μου και δεν έχω καμία απολύτως λειτουργική κίνηση σε κανένα άκρο. Πολλές προκλήσεις ξαφνικά προέκυψαν σε αυτή τη δύσκολη κατάσταση, που απαιτούν να έχω σημαντικές ικανότητες επίλυσης προβλημάτων ωστε να αυξήσω την ανεξαρτησία μου αλλά και να μειώνω την επιβάρυνση που προκαλώ στους άλλους". (Βrad, Αυστραλία) "Είμαι ένας τετραπληγικός που υπέστη κάκωση νωτιαίου μυελού πολλά χρόνια πριν, το 1974 καθώς έπαιζα ράγκμπυ όταν ήμουν 15 ½ χρονών". (Richard, Νέα Ζηλανδία) 46
Πρόληψη της Κάκωσης Νωτιαίου μυελού Όταν συμβαίνει μία κάκωση νωτιαίου μυελού συνεπεία ενός τροχαίου ατυχήματος ή μίας πτώσης, συνήθως ο ασθενής περνάει μέσα σε δευτερόλεπτα από μία κατάσταση καλής υγείας σε μια κατάσταση μόνιμης αναπηρίας. Είτε πρόκειται για τραυματική είτε για μια μη τραυματική κάκωση, το ευχάριστο είναι ότι ένα μεγάλο ποσοστό αυτών των κακώσεων μπορεί να προληφθεί. Η πρωτογενής πρόληψη αφορά ενέργειες που αποσκοπούν στο να ελέγξουν ή και να εξαλείψουν την αιτία των κακώσεων νωτιαίου μυελού σε ένα άτομο ή πληθυσμό πριν ακόμα προκύψει το πρόβλημα, π.χ. ενέργειες για τον περιορισμό των τροχαίων ατυχημάτων. Η δευτερογενής πρόληψη λαμβάνει χώρα μετά από την κάκωση νωτιαίου μυελού. Σκοπός της είναι να παρασχεθεί έγκαιρη διάγνωση και θεραπεία, να περιοριστεί η αναπηρία (βλέπε κεφάλαιο 4: ανάγκες υγειονομικής περίθαλψης και αποκατάστασης: προ-νοσοκομειακή φροντίδα και επείγουσα φροντίδα), η έγκαιρη αναγνώριση της πιθανότητας να έχει συμβεί ΚΝΜ μετά από έναν τραυματισμό, συμπεριλαμβανόμενης της κατάλληλης μεταφοράς σε εξειδικευμένη μονάδα και η πρόσβαση στην αποκατάσταση της οξείας φάσης είναι μέρος της δευτερογενούς πρόληψης. Η τριτογενής πρόληψη εστιάζει στην αποκατάσταση μετά από ΚΝΜ και στις τροποποιήσεις του περιβάλλοντος ώστε να μειωθούν οι επιπλοκές και να ενισχυθεί η επιτυχής συμμετοχή του τραυματισμένου προσώπου στην οικογενειακή και κοινωνική ζωή (1). Όλες οι μορφές πρόληψης είναι απαραίτητες. Οι άνθρωποι με αναπηρία έχουν καταδείξει την πρόσβαση στις υπηρεσίες υγείας, την πρόληψη του κοινωνικού αποκλεισμού και τη διασφάλιση των ανθρωπίνων δικαιωμάτων ως αναγκαίες συνθήκες για την ευζωία των ατόμων με αναπηρία (2). Το ανθρώπινο δικαίωμα του σεβασμού και της αξιοπρέπεια όπως περιγράφηκε στη Σύμβαση για τα Δικαιώματα των Ανθρώπων με Αναπηρίες (3), συνεπάγεται ότι οι στρατηγικές πρόληψης δε θα έπρεπε να προσβάλουν τους ανθρώπους που ήδη έχουν μια κάκωση νωτιαίου μυελού (4). Στο κεφάλαιο αυτό εξετάζονται παρεμβάσεις πρωτογενούς πρόληψης με σκοπό να περιοριστεί η επίπτωση της ΚΝΜ και πιο συγκεκριμένα της τραυματικής αιτιολογίας ΚΝΜ. Εστιάζεται κυρίως σε παρεμβάσεις με αποδεδειγμένη αποτελεσματικότητα και επίσης θα αναδειχθούν εκείνες για τις οποίες απαιτείται περισσότερη έρευνα. Η δευτερογενής και η τριτογενής πρόληψη καλύπτονται σε επόμενα κεφάλαια.
3
Αιτίες τραυματικής κάκωσης νωτιαίου μυελού Η τραυματική κάκωση νωτιαίου μυελού μπορεί να επέλθει από διαφορετικούς μηχανισμούς, π.χ. τροχαίο ατύχημα, πτώση, βία, στη διάρκεια δραστηριοτήτων π.χ. εργασία, αθλητισμός ή στο σπίτι. Οι στρατηγικές πρόληψης τείνουν να σχετίζονται με το χώρο όπου υπάρχει αυξημένος κίνδυνος να συμβεί τραυματισμός. Σ’αυτή την ενότητα θα συζητηθούν οι στρατηγικές πρόληψης της κάκωσης νωτιαίου μυελού ανάλογα με την αιτία που την προκαλεί. 47
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Τροχαία ατυχήματα Ενώ οι συνθήκες και ο ακριβής μηχανισμός μπορεί να διαφέρει ανάλογα με την περιοχή, τα τροχαία ατυχήματα αποτελούν παγκοσμίως την πιο συχνή αιτία κάκωσης νωτιαίου μυελού. Σύμφωνα με παγκόσμιες στατιστικές για τα τροχαία ατυχήματα (βλ. Κεφάλαιο 2), η επίπτωση της ΚΝΜ είναι υψηλότερη στους νεαρούς ενήλικες και στους άνδρες (5-7). Κατά συνέπεια, η μείωση της συχνότητας των τροχαίων ατυχημάτων είναι ένα σημαντικό βήμα για την πρόληψη της ΚΝΜ και μπορεί να ταξινομηθεί σε τρεις φάσεις σύμφωνα με τον Haddon (8): πριν από τη σύγκρουση, τη σύγκρουση και μετά τη σύγκρουση (βλ. πίνακα 3.1).
Η πρόσεγγιση των ασφαλών συστημάτων στην πρόληψη των συγκρούσεων. Η υιοθέτηση ενός συστήματος για την ασφάλεια στην πρόληψη των τροχαίων ατυχημάτων υπήρξε θεμελιώδης στην ελάττωση των θανάτων και της αναπηρίας που σχετίζεται με τα τροχαία ατυχήματα σε χώρες υψηλού εισοδήματος (Σχήμα 3.1) (9,12). Αυτή η προσέγγιση θεωρεί ότι η αλληλεπίδραση οχημάτων όλων των ειδών με διαφορετικούς τύπους χρηστών του δρόμου σε έναν κοινό χώρο είναι πιθανό να οδηγήσει σε συγκρούσεις, και ότι αν τα επιμέρους στοιχεία (οχήματα, άνθρωποι και δρόμος) και οι αλληλεπιδράσεις τους δεν είναι κατάλληλα σχεδιασμένες, θα συνεχίσουν να συμβαίνουν συγκρούσεις, με αποτέλεσμα σοβαρούς Πίνακας 3.1. Φάση Άνθρωπος Πριν τη Πρόληψη σύγκρουση της σύγκρουσης Πληροφόρηση Συμπεριφορές Αναπηρία Αστυνόμευση
τραυματισμούς και θύματα (9). Η προσέγγιση των ασφαλών συστημάτων επιχειρεί να ταυτοποιήσει και να διορθώσει τις σημαντικότερες αιτίες "σφάλματος" σε κάθε φάση πρίν από τη σύγκρουση, κατά τη σύγκρουση και μετά τη σύγκρουση. Για παράδειγμα, οι κύριοι παράγοντες κινδύνου για τους επιβάτες οχημάτων είναι καλά γνωστοί: υπερβολική ταχύτητα, μη χρήση ζωνών ασφαλείας και παιδικών καθισμάτων, και η οδήγηση υπο την επήρεια αλκοόλ ή ναρκωτικών αναψυχής (13). Η ανάπτυξη και η υλοποίηση σχεδίων δράσης βασισμένων σε δεδομένα συγκρούσεων και σε παρεμβάσεις που βασίζονται σε κριτήρια είναι θεμελιώδεις αρχές της προσέγγισης ασφαλών συστημάτων (12, 14). Η επιτυχής υλοποίηση ενός σχεδίου δράσης για ασφαλείς δρόμους απαιτεί αποτελεσματική υπεράσπιση, ευρεία κοινωνική αποδοχή, πολυτομεακή διακυβερνητική συνεργασία εντός ενός θεσμικού φορέα (π.χ. μία θεσπισμένη επιτροπή εντός του Υπουργείου Μεταφορών και Επικοινωνιών), και τη συνεργασία της βιομηχανίας και μη κυβερνητικών οργανώσεων (ΜΚΟ) όπως οι σύνδεσμοι αυτοκινητιστών, οι επαγγελματίες υγείας και οι ομάδες δράσης για την οδική ασφάλεια (9). Η προσέγγιση των ασφαλών συστημάτων είναι ολιστική και σφαιρική, και συνιστάται στην: ■ Ταυτοποίηση του προβλήματος ■ Σχεδιασμό στρατηγικής ■ Υλοποίηση επιλεγμένων πολιτικών ■ Αξιολόγηση, τροποίηση και επανα-αξιολόγηση
Το σύστημα του Haddon για την πρόληψη των τραυματισμών από τροχαία ατυχήματα Παράγοντες Οχήματα & Εξοπλισμός Καταλληλότητα Φωτισμός Φρένα Τιμόνι Ταχύτητα
Περιβάλλον Σχεδιασμός δρόμου και οδόστρωμα Όρια ταχύτητας Ασφάλεια των πεζών
Σύγκρουση Πρόληψη Χρήση μέτρων προστασίας Αναπηρία του τραυματισμού κατά τη σύγκρουση Μετά τη Διατήρηση σύγκρουση της ζωής
Μέτρα προστασίας για συνεπιβάτες Προστατευτικό Άλλες συσκευές ασφάλειας κιγκλίδωμα Ειδικός σχεδιασμός Σωστικά μέσα Κυκλοφοριακή συμφόρηση
Γνώση πρώτων βοηθειών Ευκολία πρόσβασης Πρόσβαση σε υπηρεσίες υγείας Κίνδυνος πυρκαγιάς
Πηγή (9)
48
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
Σχήμα 3.1.
Η προσέγγιση "ασφαλών συστημάτων" στην οδική ασφάλεια
Πηγή (10, 11)
Μερικά από τα προτεινόμενα μέτρα είναι: ■ Ενημέρωση και εκπαίδευση για την τήρηση του νόμου σχετικά με την κατανάλωση αλκοόλ και την οδήγηση, την ταχύτητα, τις ζώνες ασφαλείας, τη χρήση κράνους κλπ ■ Εκπαίδευση του κοινού για την οδική ασφάλεια μέσω κοινωνικής διαφήμισης, δημόσιων σχέσεων, δράσεων κλπ ■ Εφαρμογή αντισταθμιστικών μέτρων π.χ. αερόσακοι, ζώνες ασφαλείας και οδικός σχεδιασμός Η προσέγγιση μέσω των ασφαλών συστημάτων έχει αποδειχθεί θεμελιώδης για την παρατηρημένη μείωση στα τροχαία ατυχήματα, και η βάση δεδομένων για τα συστήματα οδικής ασφάλειας συνεχώς ανανεώνεται (9, 12). Η γνώση και η μεταβίβαση της πληροφορίας από τις χώρες υψηλού εισοδήματος στις μέσου και χαμηλού εισοδήματος - λαμβάνοντας υπόψη τις διαφορές στο οδικό περιβάλλον, το στόλο των οχημάτων και τους περιορισμούς σε πόρους - είναι σημαντική για την αντιμετώπιση μελλοντικών εξάρσεων στη νοσηρότητα και θνητότητα που προέρχεται από οδικά ατυχήματα (15).
Ειδικές παρεμβάσεις για την πρόληψη της κάκωσης νωτιαίου μυελού μεταξύ των χρηστών οχημάτων. Ενώ θα πρέπει να εφαρμόζονται επιμέρους παρεμβάσεις στοχευμένες στην ΚΝΜ (16, 17) (βλ πλαίσιο 3.1) τα μεγαλύτερα οφέλη αποκομίζονται από την εφαρμογή ενός συστήματος προσέγγισης που εστιάζει στο οδικό περιβάλλον ολιστικά (π.χ. χρήση της γης, πρόσβαση από και προς κοινότητες, εγγύτητα σε κατοικίες και άλλες δομές), λαμβάνοντας υπόψη τις ανάγκες και τις ικανότητες όλων των χρηστών του δρόμου, και σχεδιάζοντας και προωθώντας τη χρήση οχημάτων που όχι μόνο προστατεύουν τους επιβάτες αλλά και την ευεξία των άλλων χρηστών του δρόμου με τους οποίους μπορεί να έλθουν σε επαφή σε περίπτωση ατυχήματος (9, 12). Μια σύνοψη των παρεμβάσεων για οδικά ατυχήματα παρουσιάζεται στον πίνακα 3.2. Παρόλο που αυτές ο παρεμβάσεις κυρίως αφορούν τα οχήματα, μία τυπική περιβαλλοντική τροποποίηση που θα περιλάμβανε μέτρα εξισορρόπησης της κυκλοφορίας (π.χ. κυκλική πορεία, "σαμαράκια", διαχωριστικά λωρίδων κυκλοφορίας κ.α), θα είχε τη δυνατότητα να μειώσει τη συχνότητα όλων των τύπων τροχαίων ατυχημάτων σε αστικές περιοχές.
49
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Πλαίσιο 3.1
Οι τραυματισμοί ανατροπής αυξάνουν τον κίνδυνο κάκωσης νωτιαίου μυελού
Η Ματίλντα οδηγούσε μόνη το αυτοκίνητο του φίλου της μία Κυριακή πρωί μετά το πάρτυ των τριακοστών γενεθλίων της στο κτήμα ενός φίλου. Έπινε αλκοόλ μέχρι τις πρώτες πρωινές ώρες και είχε κοιμηθεί ελάχιστα. Το αυτοκίνητο έπεσε πάνω στο κακής κατασκευής κράσπεδο στα πλαϊνά του οδοστρώματος. Μέσα σε κλάσματα του δευτερολέπτου το αυτοκίνητο ήταν εκτός ελέγχου. Η εσωτερική πλευρά του μπροστινού τροχού χτύπησε στο κράσπεδο προκαλώντας ανατροπή του αυτοκινήτου. Η σύγκρουση ήταν σοβαρή, όπως και τα τραύματα της Ματίλντα: ένα κάταγμα στον αυχένα με παρεκτόπιση, με αποτέλεσμα να μείνει τετραπληγική. Η ιστορία της Ματίλντα είναι τυπική. Συγκρούσεις στις οποίες το αυτοκίνητο ανατρέπεται σχετίζονται με σοβαρούς τραυματισμούς. Το κεφάλι ενός επιβάτη μπορεί να έρθει σε επαφή με την οροφή του αυτοκινήτου την ώρα που αυτό βρίσκεται ανάποδα με αποτέλεσμα όλο το βάρος του σώματος να επιβαρύνει τον αυχένα (16, 18, 19). Η επακόλουθη κατακόρυφη συμπίεση σχετίζεται με κάταγμα-εξάρθρημα της αυχενικής μοίρας της σπονδυλικής στήλης. Οι συγκρούσεις με ανατροπή είναι σχετικά συχνές, ιδιαίτερα σε αγροτικές περιοχές όπου οι υψηλές ταχύτητες, πλημμελώς συντηρημένα οχήματα και οι υποδομές αποτελούν παράγοντες κινδύνου. Μέτρα για τη μείωση της συχνότητας και των συνεπειών των ατυχημάτων ανατροπής περιλαμβάνουν: ■ Κανονιστικές ρυθμίσεις για την υιοθέτηση προστασίας ανατροπής στα οχήματα (20) ■ Τη χρήση ηλεκτρονικού ελέγχου σταθερότητας στα αυτοκίνητα, δηλ ψηφιακή τεχνολογία για τη βελτίωση της ευστάθειας των αυτοκινήτων μέσω ανίχνευσης και μείωσης της ολίσθησης (21,22) ■ Την εγκετάσταση κιγκλιδωμάτων και πλαϊνών προστατευτικών με σκοπό να προωθηθεί η ασφάλεια κατα μήκος των δρόμων (23) ■ Παρεμβάσεις για την αντιμετώπιση της υπερβολικής ταχύτητας, της κούρασης και της οδήγησης υπο την επήρρεια αλκοόλ Συγκεκριμένες παρεμβάσεις περιλαμβάνουν: ■ Υποχρεωτικές προδιαγραφές για το σχεδιασμό των καθισμάτων στα οχήματα οι οποίες να προσδιορίζουν τις προδιαγραφές ύψους για την τοποθέτηση προσκέφαλου, καθώς και εξειδικευμένος σχεδιασμός καρίσματος, που να μπορούν να ελαχιστοποιήσουν την πιθανότητα και τη σοβαρότητα ενός τραυματιαμού των μαλακών μορίων στην αυχενική μοίρα της σπονδυλικής στήλης, π.χ. τραυματισμός whiplash (24-26) ■ Ορθή χρήση ζωνών ασφαλείας τριών σημείων που να προλαμβάνουν τις ισχυρές συγκρούσεις της κεφαλής με δομές στο εσωτερικό του οχήματος και οι οποίες σχετίζονται με τραυματισμούς (tension-flexion) τάσης-κάμψης (24,27,28), να προλαμβάνουν την εκτόξευση από το εσωτερικό του οχήματος (29) και να μειώνουν σημαντικά τους θωρακο-οσφυικούς τραυματισμούς. Η επίβλεψη σε συνδυασμό με συμπεριφορικές παρεμβάσεις όπως συστήματα υπενθύμισης της χρήσης ζώνης ασφαλείας , έχει φανεί να εξασφαλίζει υψηλά επίπεδα χρήσης αυτών (20,30) ■ Συστήματα πρόσδεσης για τα παιδιά που να είναι κατάλληλα για την ηλικία και το βάρος του παιδιού είναι βασικής σημασίας στη μείωση του κινδύνου τραυματισμού σε βρέφη και παιδιά, και είναι προτιμότερα από τις ζώνες αγκαλιάς δύο σημείων, και οι οποίες έχουν σχετιστεί με θωρακο-οσφυικά και κοιλιακά τραύματα (13, 31-33) ■ Παρ’όλο που ο ρόλος του κράνους ασφαλείας μοτοσυκλετιστών στην πρόληψη της κρανιοεγκεφαλικής κάκωσης είναι τώρα αποδεδειγμένος, ο ρόλος τους στην πρόληψη τραυματισμών του αυχενικού μυελού δεν είναι ξεκάθαρος. Περισσότερη έρευνα χρειάζεται για να αποδειχθεί κατά πόσο προσφέρει προστασία (34).
Προστατεύοντας άλλους χρήστες του δρόμου Η πρόληψη της ΚΝΜ και άλλων τραυματισμών στους ευάλωτους χρήστες του δρόμου (μοτοσικλετιστές, πεζοί, ποδηλάτες) είναι σύνθετο πρόβλημα και βασίζεται σε συμπεριφορικές παρεμβάσεις που είναι σχεδιασμένες για να μειώνουν τον κίνδυνο σύγκρουσης και να παρέχουν ένα ασφαλές οδικό περιβάλλον το οποίο να διασφαλίζει τον απαραίτητο διαχωρισμό των πεζών και ποδηλατών από τα οχήματα. Αυτές οι προκλήσεις είναι ιδιαίτερα πιεστικές σε χώρες χαμηλού-μέσου εισοδήματος όπου η μηχανοκί50
νηση αυξάνεται ραγδαία, όμως κυρίαρχος τρόπος μεταφοράς παραμένει το περπάτημα, η ποδηλασία και ανασφαλή οχήματα όπως υπερφορτωμένα ημιφορτηγά χωρίς μέτρα ασφαλείας για τους επιβάτες (9). Αυτός ο αυξημένος όγκος κυκλοφορίας σχετίζεται με αυξημένη έκθεση σε κίνδυνο σύγκρουσης, ενώ το πρόβλημα περιπλέκεται αν ο ρυθμός ανάπτυξης των υποδομών είναι χαμηλός. Σε αυτό το πλαίσιο η μεταφορά τεχνογνωσίας και η υιοθέτηση παρεμβάσεων "ασφαλών συστημάτων" έχουν σημαντικό ρόλο στην ταχεία μείωση της θνησιμότητας, της νοσηρότητας και της αναπηρίας που σχετίζεται με την οδική κυκλοφορία (44).
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
Πίνακας 3.2.
Σύνοψη παρεμβάσεων για οδικές συγκρούσεις Υποσχόμενες, Μη αποτελεσματικές χρειάζονται περισσότερη ή καταστροφικές. Θα πρέπει αξιολόγηση να αποθαρρύνονται Χρήση ανυψωμένων καθισμάτων για παιδιά που είναι μεγάλα για παιδικό κάθισμα (35) Εκπαίδευση στην οδική ασφάλεια χωρίς ταυτόχρονες νομοθετικές αλλαγές ή μέτρα για την ενίσχυση της οδικής ασφάλειας Οδική εκπαίδευση στο σχολείο (37,38) Τοποθέτηση βρεφών και παιδών σε θέση με αερόσακο (39)
Παρεμβάσεις που λειτουργούν και πρέπει να εφαρμοστούν ευρέως Νομοθεσία και επιτήρηση για την οδήγηση υπο την επήρρεια αλκοόλ (συμπεριλαμβάνεται όριο συγκέντρωσης αλκοόλ στο αίμα 0,05g/dl για όλους τους οδηγούς και λιγότερο για τους νέους οδηγούς, χρήση αλκοοτέστ τυχαίας εκπνοής, ελάχιστο όριο ηλικίας για την αγορά αλκοόλ, έλεγχος στα σημεία πώλησης) (9) Χρήση ζωνών ασφαλείας (36) Χρήση μέτρων ασφαλείας για παιδιά επιβάτες (35) Θέσπιση και επίβλεψη για την τήρηση ορίων ταχήτητας (χρήση καμερών, χαμηλότερα όρια κοντά σε σχολεία, νοσοκομεία κλπ) Φώτα ημέρας για τις μοτοσικλέτες (9) Σχεδιασμός δρόμων που να διαχωρίζει τους πεζούς και ποδηλάτες από τα αυτοκίνητα και τα βαρύτερα οχήματα (9,12,41) Περιοχικά μέτρα αποσυμφόρησης της κυκλοφορίας (42) Συστήματα διαβάθμισης των αδειών οδήγησης (43)
Πτώσεις Επιπρόσθετα στις οδικές συγκρούσεις, οι πτώσεις συνεισφέρουν σημαντικά στις κακώσεις νωτιαίου μυελού. Τέσσερα είδη πτώσεων έχει φανεί οτι οδηγούν σε κακώσεις νωτιαίου μυελού, συγκεκριμένα: ■ Πτώσεις από ίδιο ύψος (π.χ. στη διάρκεια αθλήματος, σκοντάφτοντας σε ένα χαλί, κουβαλώντας μεγάλο βάρος βλ. Πλαίσιο 3.2) ■ Πτώση από ύψος μικρότερο του ενός μέτρου (π.χ. πτώση σε σκάλες, από χαμηλό τοίχο) ■ Πτώση από ύψος μεγαλύτερο του ενός μέτρου (π.χ. πτώση από κτίριο ή πτώση από άλογο) ■ Χτύπημα ή σύνθλιψη από αντικείμενο που πέφτει (π.χ. κατάρρευση σήραγγας ορυχείου) Πολλές σοβαρές πτώσεις συμβαίνουν στη διάρκεια της εργασίας, κατα την άθληψη ή σε ανασφαλείς κατοικίες. Στο σπίτι, οι πτώσεις μπορεί να συμβούν σε σκάλες ή εξαιτίας άλλων εμποδίων, και είναι ιδιαίτερα συχνά μεταξύ των ηλικιωμένων και των νεαρών ανηλίκων. Η πρόληψη των πτώσεων μπορεί να βελτιωθεί με αλλαγές στο περιβάλλον κατοικίας των ηλικιωμένων όπως η απομάκρυνση περιττών αντικειμένων, μη
σταθερών χαλιών και ανώμαλων δαπέδων και η εγκατάσταση σωστού φωτισμού, χειρολαβών και καθισμάτων κατάλληλου ύψους, σωστών κρεβατιών και καθισμάτων τουαλέτας (48). Προγράμματα για την αξιολόγηση της ισορροπίας μπορεί να αναδεικνύουν αυτους που βρίσκονται σε κίνδυνο, και μπορεί να οδηγήσουν στην υλοποίηση μέτρων για τη βελτίωση της ισορροπίας και την πρόληψη πτώσεων, όπως μαθήματα φυσικής άσκησης, η προαγωγή κατάλληλων βοηθημάτων (π.χ. περιπατητήρες) και εξάσκηση των χρηστών στη χρήση και συντήρησή τους. Η πρόληψη των πτώσεων περιλαμβάνει τροποποίηση του περιβάλλοντος, θέσπιση νόμων και κανονισμών, εκπαίδευση του πληθυσμού αναφορικά με τους κινδύνους και η παροχή φροντίδας άμεσα μετά την πτώση. Μία συνοψη των παρεμβάσεων φαίνεται στον πίνακα 3.3.
Βία Η χρήση όπλων (που χρησιμοποιούνται για επίθεση, αυτοκτονία ή κατά λάθος) είναι μία από τις συχνότερες αιτίας τραυματικής κάκωσης νωτιαίου μυελού , με την υποσαχάριο Αφρική να έχει την υψηλότερη αναφερό51
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
μενη αναλογία ΚΝΜ σχετιζόμενη με βία στον κόσμο (38% όλων των περιπτώσεων ΚΝΜ) (52). Τα μαχαίρια και άλλα αιχμηρά αντικείμενα μπορούν επίσης να χρηΠλαίσιο 3.2. Πτώσεις κουβαλώντας βάρος στο κεφάλι
σιμοποιηθούν για να προκαλέσουν διατιτραίνοντα τραύματα που οδηγούν σε ΚΝΜ (53). Τραυματισμοί στο νωτιαίο μυελό εξαιτίας έκρηξης βόμβας έχουν επί-
Σε πολλές χώρες χαμηλού εισοδήματος οι άνθρωποι κουβαλούν βάρη στο κεφάλι. Οι αχθοφόροι συχνά κουβαλούν βάρη μέχρι και 100Kgr στο κεφάλι τους. Αυτή η πρακτική έχει καταγραφεί στο Μπαγκλαντές (45) , τη Γκάνα (46), και τη Σιέρα Λεόνε (47). Στο Μπαγκλαντές οι άνθρωποι που παθαίνουν κάκωση του αυχενικού μυελού καθώς κουβαλούν ένα μεγάλο βάρος στο κεφάλισυνήθως ένα φορτίο αγροτικών προϊόντων, λιπάσματος ή ρυζιού- είναι συχνά φτωχοί άνδρες που δουλεύουν σαν αχθοφόροι και αγρότες. Ο κίνδυνος ΚΝΜ λόγω πτώσης κατα την άρση βάρους στο κεφάλι αυξάνεται πολύ στους νέους και άπειρους φορείς, στα παιδιά και όταν το βάρος ξεπερνά τα 50 Κgr (45). Kαθώς ο φορέας πρέπει να κρατά το κεφάλι όρθιο συνεχώς για τη διατήρηση της ισορροπίας του φορτίου, είναι πολύ δύσκολο να παρατηρεί το δρόμο ή το μονοπάτι στο οποίο περπατάει. Ανώμαλες ή ολισθηρές επιφάνειες συχνά προκαλούν πτώσεις. Εξήντα τοις εκατό των περιπτώσεων συμβαίνουν σε αγροτικές περιοχές, σε αγροτικές εκτάσεις ή χωματόδρομους. Το άτομο που πέφτει χάνει την ισορροπία του και ο συνδυασμός των δυνάμεων της πτώσης και των δυνάμεων του μεγάλου φορτίου οδηγούν σε ένα συμβάν υψηλής ενέργειας. Το πρόσωπο δεν είναι σε θέση να απωθήσει το βαρύ φορτίο από το κεφάλι του ή να ελέγξει την ανώμαλη κίνηση του αυχένα που προκαλείται από το βάρος και την ορμή του φορτίου. Κάτι τέτοιο εύκολα μετατρέπει μια χαμηλής ενέργειας πτώση σε μία υψηλής ενέργειας πτώση, με συνακόλουθη ΚΝΜ. Οι κυβερνήσεις μπορεί εύκολα να παραβλέψουν την έκταση αυτού του προβλήματος, επειδή αυτοί οι τραυματισμοί τυπικά συμβαίνουν σε αγροτικές κοινότητες και επηρεάζουν ανθρώπους φτωχούς και χωρίς επιρροή. Η ανεργία συχνά είναι μεγάλη και οι τραυματισμένοι εργάτες αντικαθίστανται εύκολα. Η επίπτωση αυτών των τραυματισμών στα άτομα και τις οικογένειές τους, πάντως, είναι ανυπολόγιστη. Η πρόληψη μπορεί νε επιτευχθεί μέσω της στροφής προς εναλλακτικούς τρόπους μεταφοράς βάρους. Τα καρότσια μεταφοράς μεταφέρουν μεγαλύτερα φορτία, είναι πιο ανθεκτικά και πιο ασφαλή. Η προώθηση των καροτσιών σαν εναλλακτική θα απαιτούσε κυβερνητικές ρυθμίσεις και υποστήριξη, και πιθανώς επίσης οικονομικά κίνητρα για να γίνουν τα καρότσια μεταφοράς μία ελκυστική εναλλακτική για τους εργοδότες. Η διαδικασία ταυτοποίησης καταστάσεων στις οποίες υπάρχει ανάγκη για πρόληψη τραυματισμών σε ένα επαγγελματικό περιβάλλον περιλαμβάνει προσεκτική ανάλυση και των μηχανικών παραγόντων που εμπλέκονται στην πτώση και της αλληλουχίας γεγονότων που τελικά οδηγεί σε τραυματισμούς.
Πίνακας 3.3
Σύνοψη των παρεμβάσεων για τις πτώσεις Παρεμβάσεις που λειτουργούν και θα πρέπει να έχουν ευρεία εφαρμογή Δάπεδο ελεύθερο από περιττά αντικείμενα, χαλαρά χαλιά, παροχή καλού φωτισμού, χειρολαβών και έπιπλα στο σωστό ύψος Ασφάλειες παραθύρων σε ψηλά κτίρια, κιγκλίδωμα στην οροφή (49). Γεωργικός εξοπλισμός ασφαλείας*.
Κατηγορία πτώσης
Υποσχόμενες, αλλα χρειάζεται περισσότερη αξιολόγηση
Αναποτελεσματικές ή καταστροφικές, θα έπρεπε να αποφεύγονται Μεμονωμένα εκπαιδευτικά προγράμματα
Πτώσεις στο ίδιο επίπεδο
Πτώσεις από ύψος μεγαλύτερο του ενός μέτρου, πχ από κτίρια, οροφές, δέντρα
Τήρηση κανονισμών κτιρίων (50) Μεμονωμένα εκπαιδευτικά Εκπαίδευση γονέων μικρών παιδιών προγράμματα για τον κίνδυνο πτώσης που σχετίζεται με συγκεκριμένα προϊόντα (51) Εργασιακές ρυθμίσεις που θέτουν περιορισμούς στο βάρος που τοποθετείται στο κεφάλι, και στην ηλικία των εργατών*.
Χτύπημα ή συνθλιψη Καρότσια μεταφοράς όπου είναι από βαρύ αντικείμενο, εφικτό πχ κουβαλώντας βάρος στο κεφάλι
* Οι παρεμβάσεις ίσως δεν είναι εφικτό να εφαρμοστούν σε κάθε περιβάλλον, ιδιαίτερα στις χώρες χαμηλού εισοδήματος όπου το εργατικό δίκαιο μπορεί να μην είναι διατυπωμένο ή να μην εφαρμόζεται.
52
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
σης αναφερθεί (54). Ένα μικρό ποσοστό των πτώσεων από ύψος επίσης προκαλούνται από εκούσιο αυτοτραυματισμό. Υπάρχουν δεδομένα που υποστηρίζουν ότι, όπως θα περίμενε κανένας, νομοθεσίες με όρους περιοριστικούς για την οπλοχρησία και την οπλοκατοχή τείνουν να σχετίζονται με χαμηλότερα επίπεδα βίας από τη χρήση όπλου. Πολιτικές που περιορίζουν την αδειοδότηση οπλοχρησίας και την απόκτηση όπλου - συμπεριλαμβανόμενων απαγορεύσεων, αδειοδοτικές ρυθμίσεις, ελάχιστη ηλικία αγοραστή, ειδικούς ελέγχους-έχουν εφαρμοστεί και φαίνεται να είναι αποτελεσματικές σε χώρες όπως η Αυστραλία, η Αυστρία, η Βραζιλία και η Νέα Ζηλανδία. Μελέτες στην Κολούμπια και το Ελ Σαλβαδόρ δείχνουν οτι η τήρηση των απαγορεύσεων στη δημόσια οπλοκατοχή μπορεί να μειώσει το ρυθμό ανθρωποκτονιών (55). Πολύπλευρες στρατηγικές επίσης είναι απαραίτητες για να μειωθεί η ζήτηση όπλων -για παράδειγμα μέσω της αποθάρρυνσης των εφήβων από τη συμμετοχή σε συμμορίες. Αναφορικά με τα μαχαίρια και άλλα αιχμηρά αντικείμενα, οι κυβερνήσεις χρειάζονται, επιπρόσθετα μέτρα ελέγχου, ευρείες στρατηγικές για να μειώσουν κοινωνικοοικονομικούς παράγοντες που υποβόσκουν της βίαιης χρήσης αυτών των όπλων. Λιγότερα δεδομένα είναι διαθέσιμα σχετικά με την αποτελεσματικότητα των προσπαθειών περιορισμού της βίας που σχετίζεται με αιχμηρά αντικείμενα, π.χ. μαχαίρια, από ότι των προσπαθειών περιορισμού της βίας που σχετίζεται με πυροβόλα όπλα. Μέχρι τώρα, οι αρμόδιες αρχές έχουν εστιάσει σε παρόμοια μέτρα όπως αυτά που χρησιμοποιούνται για τον έλεγχο των πυροβόλων όπλων. Στο Ηνωμένο Βασίλειο, αυτά έχουν περιλάβει νομοθετικές τροποποιήσεις (π.χ. απαγόρευση σουγιάδων, ελάχιστη ηλικία για την αγορά), πιο αυστηρή επιτήρηση (πρωτοβουλίες επιτόπιου ελέγχου) και αμνηστίες όπλων. Παρ’όλα αυτά, η αποτελεσματικότητα αυτών των μέτρων δεν είναι σαφής (55). Στρατηγικές για την πρόληψη της βίας, άλλες από εκείνες που στοχεύουν στη μειωμένη πρόσβαση σε θανατηφόρα μέσα όπως όπλα και μαχαίρια που περιγράφονται παραπάνω, περιλαμβάνουν τα ακόλουθα: την ανάπτυξη ασφαλών, σταθερών και στοργικών σχέσεων μεταξύ παιδιών, γονέων και φροντιστών ώστε να προληφθεί η παιδική κακοποίηση και άλλες μορφές βίας στη μετέπειτα ζωή, την ανάπτυξη δεξιοτήτων στα
παιδιά και τους εφήβους για την πρόληψη μελλοντικής ανάμιξης σε επεισόδια νεανικής βίας, τη μείωση της διαθεσιμότητας και της επιβλαβούς χρήσης του αλκοόλ που είναι παράγοντας κινδύνου για όλες τις μορφές της βίας, την προώθηση της ισότητας των δύο φύλων με σκοπό την αποτροπή της βίας εναντίον γυναικών, την αλλαγή των πολιτισμικών και κοινωνικών προτύπων που ενισχύουν τη βία, καθώς και προγράμματα για τον εντοπισμό, τη φροντίδα και την υποστήριξη θυμάτων.
Αιτίες μη τραυματικής κάκωσης νωτιαίου μυελού Η πρόληψη μη τραυματικών ΚΝΜ εξαρτάται από ευρύτερα μέτρα και για τη δημόσια υγεία, και για την πρόληψη των νοσημάτων. Περιπτώσεις μη τραυματικής βλάβης νωτιαίου μυελού περιλαμβάνουν: ■ Μεταδοτικά νοσήματα - Φυματίωση (ΤΒ) και τον ιό της ανοσοανεπάρκειας του ανθρώπου (HIV) ■ Mη μεταδοτικά νοσήματα - καρκίνος, εκφυλιστικές παθήσεις όπως οστεοαρθρίτιδα που οδηγεί σε σπονδυλική στένωση, καρδιοαγγειακή νόσος ■ Διατροφικές ανεπάρκειες- ελείμματα στο σπονδυλικό σωλήνα, έλλειψη της βιταμίνης Β12 (56) ■ Ιατρικές επιπλοκές Μερικές στρατηγικές πρόληψης που σχετίζονται με κάθε ομάδα καταστάσεων αναφέρονται παρακάτων και συνοψίζονται στον Πίνακα 3.4. Λοιμώξεις όπως η ΤΒ είναι πιο συχνές σε χώρες μεσαίου και χαμηλού εισοδήματος από ότι σε εκείνες με υψηλά εισοδήματα. Η φυματίωση της σπονδυλικής στήλης εμφανίζεται σε περίπου 1-2% των ανθρώπων με ΤΒ, και με δεδομένη τη συχνότητα της ΤΒ, μπορεί να αφορά περίπου το 20% των καταστάσεων που αφορούν τη σπονδυλική στήλη σε κάποιες δομές (58, 64). Ο επιπολασμός της σπονδυλικής ΤΒ έχει αυξηθεί με την αύξηση των HIV λοιμώξεων (65-67). Συνήθης κλινική εκδήλωση αποτελεί η ραχιαλγία, ο πυρετός, η απώλεια βάρους και το νευρολογικό έλειμμα (68). Η πρόληψη των ΚΝΜ ως αποτέλεσμα της ΤΒ εξαρτάται από την έγκαιρη ανίχνευση και θεραπεία (69). Η σπονδυλική ΤΒ μπορεί να ταυτοποιηθεί μέσω βιοψίας ή μαγνητικού συντονισμού (ΜRI). Παρ’ όλα αυτά, αυτά τα μέσα μπορεί να μην είναι άμεσα διαθέσιμα σε χώρες 53
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Πίνακας 3.4. Αιτία
Σύνοψη παρεμβάσεων για την πρόληψη της μη τραυματικής βλάβης νωτιαίου μυελού Παρεμβάσεις που λειτουργούν και πρέπει να εφαρμοστούν ευρέως Εμβόλια (ΒCG για την ΤΒ) Έγκαιρη διάγνωση και φαρμακευτική θεραπεία για σπονδυλική ΤΒ (58) Έγκαιρη διάγνωση και θεραπεία Εμπλουτισμός του σιτάλευρου και του αραβοσιτάλευρου με φολικό οξύ και άλλα ιχνοστοιχεία (59) Δεν είναι γνωστές Διαλειπόντως συμπληρώματα σιδήρου και φολικού οξέως κατα την αναπαραγωγική ηλικίας (62,63)
Υποσχόμενες, χρειάζεται περισσότερη αξιολόγηση Θεραπεία με υψηλής δραστικότητας αντιρετροϊκή θεραπεία (HAART) για HIV (57)
Λοιμώξεις (πχ ΤΒ, HIV)
Kαρκίνος Δισχιδής ράχη
Εκφυλιστικές καταστάσεις του νωτιαίου μυελού
χαμηλού και μέσου εισοδήματος, καθυστερώντας έτσι τη διάγνωση (70). Η θεραπεία για τη σπονδυλική ΤΒ περιλαμβάνει τη λήψη πλήρους αντιφυματικού θεραπευτικού σχήματος και μπορεί, αν ενδείκνυται, να περιλαμβάνει χειρουργική επέμβαση στη σπονδυλική στήλη. Ο καρκίνος με επέκταση στη σπονδυλική στήλη μπορεί να συμπιέσει το νωτιαίο μυελό και τις γειτονικές νωτιαίες δομές. Αν αυτό δεν διορθωθεί μπορεί να οδηγήσει σε πόνο, παράλυση και ακράτεια. Η πρόληψη του καρκίνου που επεκτείνεται στη σπονδυλική στήλη εξαρτάται από την έγκαιρη διάγνωση και αντιμετώπιση, ιδιαίτερα σε καρκίνους που αφορούν το μαστό, τον πνεύμονα και τον προστάτη (71). Θεραπείες για την αποσυμπίεση του νωτιαίου μυελού σε περίπτωση σπονδυλικών όγκων περιλαμβάνουν ακτινοθεραπεία, χειρουργείο, φαρμακοθεραπεία και χημειοθεραπεία (72,73). Παρ’ ολο που πολλοί παράγοντες έχει βρεθεί να σχετίζονται με ελλείμματα στο νευρικό σωλήνα, η αύξηση της πρόσληψης φολικού οξέως έχει φανεί οτι είναι μία βιώσιμη, οικονομική διατροφική παρέμβαση για την πρόληψή τους (74, 75). Μία μετα-ανάλυση των διαθέσιμων δεδομένων υπογραμμίζει αυτά τα ευρήματα (βλ. Πλαίσιο 3.3). Περίπου 63 χώρες υποχρεωτικά εμπλουτίζουν το σιτάλευρο με φολικό οξύ (91), το οποίο είχε ως αποτέλεσμα μία καταγεγραμμένη μείωση στην επίπτωση της δισχιδούς ράχης (77, 92, 93). Εμπλουτισμός της διατροφής με φολικό οξύ τρεις μήνες πριν και μετά τη σύλληψη έχει φανεί οτι μειώνει το ρυθμό γέννησης βρεφών 54
με ελείμματα του νευρικού σωλήνα, συμπεριλαμβανόμενης της δισχιδούς ράχης (60, 61). Για παράδειγμα, μία Ισραηλινή μελέτη έδειξε οτι τρία χρόνια μετά τη θέσπιση του εμπλουτισμού με φολικό οξύ (2002 και 2004), η επίπτωση της δισχιδούς ράχης μειώθηκε από 14.4 στο 8.9 ανα 10.000 γεννήσεις ζώντων (84). Οι καμπάνιες ενημέρωσης μπορούν να αυξήσουν τη γνώση σχετικά με τα επίπεδα φολικού οξέος (94) αλλά διαρκείς καμπάνιες για την προώθηση του εμπλουτισμού της διατροφής πριν και μετά τη σύλληψη είναι απαραίτητες για την επιτυχία.
Δραστηριότητες, χώροι και συνθήκες που σχετίζονται με κακώσεις του νωτιαίου μυελού Εργατικά ατυχήματα Ένα σημαντικό ποσοστό ατυχημάτων που οδηγούν σε ΚΝΜ συμβαίνουν στο χώρο εργασίας (95, 96), ιδιαιτέρως στη βιομηχανία κατασκευών, γεωργίας και ορυχείων (95, 96). Οι πιο συχνές εξωγενείς αιτίες σε ένα επαγγελματικό περιβάλλον είναι οι πτώσεις από ύψος και η πλήξη ή η σύνθλιψη από πτώση αντικειμένου (96). Οι ΚΝΜ και άλλοι μείζονες τραυματισμοί συχνά συμβαίνουν σε υπόγεια ορυχεία, όπου η κύρια περιοχή εργασίας είναι ένα οριζόντιο τούνελ, ενώ η κύρια έξοδος στην επιφάνεια της γης είναι είτε κάθετη είτε επικλινής. Ενώ οι δραστηριότητες των ορυχείων στις χώρες υψηλού εισοδήματος είναι καλά οργανωμένες
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
και διέπονται από αυστηρούς νόμους (97-99), στις χώρες χαμηλού εισοδήματος με φτώχεια, μεγάλο ποσοστό ανεργίας, μη τήρηση των νόμων και διαφθορά μπορεί να εφαρμόζονται μη ασφαλείς πρακτικές στα ορυχεία. Για παράδιεγμα στην Αφρική όπου υπάρχουν αυξανόμενοι αριθμοί από μικρά και ανεπίσημα ορυ-
χεία που έχουν ανεπαρκή μέτρα υγιεινής και μηχανισμούς ασφάλειας (100, 101). Οι τραυματισμοί σε ορυχεία μπορεί να μην αναφέρονται στις αρχές, και στατιστικά στοιχεία μπορεί να είναι δύσκολο να καταγραφούν. Παρόλα αυτά η βιομηχανία των ορυχείων έχει να επιδείξει ένα παράδειγμα προγράμματος πρό-
Πλαίσιο 3.3. Παρεμβάσεις για την πρόληψη της δισχιδούς ράχης Η δισχιδής ράχη είναι μία συγγενής διαταραχή που επηρεάζει τις κυήσεις σε όλο τον κόσμο. Μία συστηματική ανασκόπηση για την επίπτωση της δισχιδούς ράχης βρήκε ένα εύρος ρυθμών επίπτωσης από 2,3 ανα 10000 στη Βραζιλία (76) έως 32,1 ανα 10000στο Ομάν (77). Μία μετα-ανάλυση που πραγματοποιήθηκε γι’αυτή την αναφορά υπολόγισε το συνολικό δείκτη επίπτωσης στο 8,4 ανα 10000 (βλέπε τεχνικό παράρτημα C για τη μεθοδολογία και την ορολογία που χρησιμοποιήθηκε). Αυτός ο συνολικός δείκτης επίπτωσης δεν αντανακλά τη διακύμανση στους ρυθμούς επίπτωσης μεταξύ μελετών που καταγράφουν διαφορετικά δεδομένα κυήσεων και γεννήσεων (βλ Κεφάλαιο 2). Ο συνολικός δείκτης επίπτωσης της δισχιδούς ράχης είναι κοντά στο 4.5/10000 σε μελέτες που χρησιμοποιούν δεδομένα από γεννήσεις ζώντων, ενών εκείνες που χρησιμοποιούν δεδομένα από γεννήσεις ζώντων και νεκρών εμβρύων καθώς και από διακοπές κυήσεων αναφέρουν δείκτες επίπτωσης κοντά στο 10,0/10000 και 9,1/10000 αντίστοιχα. Η πρόσληψη φολικού οξέως με τη μορφή συμπληρωμάτων έχει διεχτεί οτι μειώνει σημαντικά τον κίνδυνο της εμφάνισης δισχιδούς ράχης ή άλλων ελειμμάτων στο σπονδυλικό σωλήα κατα περίπου 50% (78). Καθώς ο νευρικός σωλήνας κλείνει νωρίς στη διάρκει της εμβρυικής ανάπτυξης (28 ημέρες μετά τη σύλληψη), η ιδανική περίοδος για την πρόσληψη φολικού οξέως είναι πριν την κύηση (79). Πολλές κυήσεις είναι απρογραμμάτιστες και δυστυχώς οι εκπαιδευτικές καμπάνιες που έχόυν στόχο να ενθαρΜετα-ανάλυση της επίδρασης του εμπλουτισμού με φολικό οξύ στους δείκτες επίπτωσης της δισχιδούς ράχης
Πηγές: a(83), b(76), c(84), d(77), f(86), g(87), h(88), i(89), j(90), k(80) συνεχίζεται....
55
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
... συνέχεια
ρύνουν τις γυναίκες να αυξήσουν την πρόσληψη φολικού οξέος υπήρξαν αναποτελεσματικές ως προς την προσέγγιση πληθυσμών υψηλού κινδύνου, π.χ. χαμηλού κοινωνικοοικονομικού επιπέδου, χαμηλής μόρφωσης, μεταναστών, απρογραμμάτιστων κυήσεων, κλπ (80). Προς αντιστάθμιση αυτού, κάποιες χώρες επέλεξαν να εισάγουν νομοθεσία για τον υποχρεωτικό εμπλουτισμό με φολικό οξύ μίας ποικιλίας τροφίμων (81). Ο εμπλουτισμός αυτός έχει αποδειχθεί οτι βελτιώνει τα επίπεδα φολικού οξέως. Από τον εμπλουτισμό κι έπειτα στις ΗΠΑ, τον Καναδά και τη Δυτική Αυστραλία έχουν καταγραφεί μειώσεις στον επιπολασμό των ελειμμάτων του νευρικού σωλήνα της τάξης του 15-50% (82). Παρά την αποδεδειγμένη αποτελεσματικότητα της νομοθεσίας για τον υποχρεωτικό εμπλουτισμό, αυτός δεν εφαρμόζεται παγκοσμίως, και η σχετική νομοθεσία υπάρχει μόνο στην Αμερική (με εξαίρεση τη Βενεζουέλα) και την Αυστραλία. Υπάρχει επίσης μερική κάλυψη σε περιοχές της Αφρικής, του Δυτικού Ειρηνικού και της ΝοτιοΑνατολικής Ασίας, καθώς και σστην πλειονότητα των περιοχών της Ανατολικής Μεσογείου. Μερική κάλυψη ως προς τον υποχρεωτικό εμπλουτισμό υπάρχει στην Ευρωπαϊκή ήπειρο, αλλά μόνο σε χώρες της ανατολικής Ευρώπης (δηλ. Δημοκρατία της Μολδαβίας, Καζακστάν, Ουζμπεκιστάν, Κυργιστάν και Τουρκμενιστάν). Το παραπάνω σχήμα δείχνει τα αποτελέσματα μίας μετα-ανάλυσης με δεδομένα που συλλέχθηκαν σε μελέτες για τους δείκτες επίπτωσης πριν και μετά τον υποχρεωτικό εμπλουτισμό με φολικό οξύ. Η μετα-ανάλυση δείχνει συνολικό αποτέλεσμα (λόγος δεικτών επίπτωσης) 0,43 (95% διάστημα εμπιστοσύνης 0,39-0,63) όταν χρησιμοποιήθηκαν μόνο μελέτες που συμπεριέλαβαν γεννήσεις ζώντων και νεκρών στον πληθυσμό της μελέτης . Με αυτά υπόψη, η παγκόσμια νομοθεσία υπέρ του υποχρεωτικού εμπλουτισμού θα μπορούσε να μειώσει τις γεννήσεις παιδιών με δισχιδή ράχη κατα 38000 το χρόνο (βλέπε τεχνικό παράρτημα Δ για τις μεθόδους που χρησιμοποιήθηκαν). Παρόλο που έχουν αποδειχθεί τα πλεονεκτήματα του εμπλουτισμού, πολλές χώρες, ιδιαίτερα της δυτικής Ευρώπης υπήρξαν απρόθυμες να εισάγουν μια τέτοια νομοθεσία, κυρίως λόγω ανησυχίας για επιπτώσεις στην υγεία από αυξημένη πρόσληψη φολικού οξέος, σε συνδυασμό με την έλλειψη αυτονομίας που μερικοί θεωρούν εγγενή στον υποχρεωτικό εμπλουτισμό τροφίμων με φολικό οξύ. Προς το παρόν, πολλές χώρες χωρίς προγράμματα υποχρεωτικού εμπλουτισμό συστήνουν στις γυναίκες αναπαραγωγικής ηλικίας τη λήψη συμπληρωμάτων φολικού οξέως, και παρόλο που αυτό έχει αποδειχθεί οτι παρέχει κάποιο όφελος, κυρίως περιορίζεται σε γυναίκες υψηλότερου κοινωνικοοικονομικού επιπέδου. Γι’αυτό, επιπλέον έρευνα χρειάζεται να διεξαχθεί για να στηριχθούν οι σχετικές πολιτικές καθώς και να απαντηθούν ανησυχίες για κινδύνους στην υγεία.
ληψης (βλέπε Πλαίσιο 3.4.). Στρατηγικές για την πρόληψη τραυματισμών στον εργασιακό χώρο μπορεί να περιλαβάνουν τη θέσπιση κι εφαρμογή εργασιακης νομοθεσίας, κώδικα πρακτικής
για την υγιεινή και την ασφάλεια εξειδικευμένα σε κάθε τομέα, καθώς και την εφαρμογή παρεμβάσεων βασισμένων σε επιστημονικά δεδομένα (103-106).
Πλαίσιο 3.4. Αποτρέποντας θανάτους και τραυματισμούς που σχετίζονται με τα ορυχεία στη Νότιο Αφρική Στη Νότιο Αφρική, η διαθεσιμότητα των δεδομένων σχετικά με τους θανάτους και τους τραυματισμούς στα ορυχεία είχε σαν αποτέλεσμα να μπορούν να εκτιμηθούν τα αποτελέσματα ενός προγράμματος πρόληψης τραυματισμών, να ταυτοποιηθούν βραχυπρόθεσμοι στόχοι, και να τεθούν μελλοντικοί προληπτικοί στόχοι. Αυτή η συστηματική προσέγγιση δημόσιας υγείας που εφαρμόστηκε από την Κυβέρνηση περιλάμβανε: ■ Την απόκτηση δεδομένων για το μέγεθος του προβλήματος: δηλαδή τον αριθμό των θανάτων και τραυματισμών στα ορυχεία, για παράδειγμα ανα τοποθεσία και κύριο προϊόν (χρυσός, άνθρακας κλπ) ■ Την ταυτοποίηση του κινδύνου: γεωλογικός, υδρολογικός, σεισμολογικός και διαδικασίες εκκένωσης πετρωμάτων ■ Την ανάλυση κι εκτίμηση του κινδύνου: στην ταυτοποίηση του κινδύνου περιλαβάνεται το πως εκτίθενται οι άνθρωποι, την πιθανότητα και τη συχνότητα της έκθεσης και τις πιθανές συνέπειες (συμπεριλαμβανόμενων σοβαρών τραυματισμών όπως ΚΝΜ). Η εκτίμηση του κινδύνου περιλαμβάνει τον προσδιορισμό των βαθμού του κινδύνου και την κατάταξη κατα σειρά σοβαρότητας ■ Σχεδιασμός και υλοποίηση παρεμβάσεων για τον έλεγχο του κινδύνου: π.χ. τροποποίηση του εργασιακού περιβάλλοντος, τροποποίηση του εξοπλιστικου σχεδιασμού, η υιοθέτηση νέων κανόνων για τη μείωση της έκθεσης σε κίνδυνο και η παροχή πληροφορίας και εκπαίδευσης, για παράδειγμα στην επίβλεψη και αποτίμηση της ασφάλειας συνεχίζεται....
56
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
... συνέχεια
■ Eνισχυμένη επίβλεψη για την τήρηση των κανονισμών και διαχείριση των παραβιάσεων ■ Παρακολούθηση και αναθεώρηση: για να διαφαλιστεί ότι οι μεταρρυθμίσεις δεν απειλούν την αποτελεσματικότητα των μέτρων ασφαλείας. Σαν αποτέλεσμα αυτής της διαδικασίας, έχει παρατηρηθεί σημαντική μείωση στους θανατηφόρους και σοβαρούς εργατικούς τραυματισμούς στα ορυχεία της Νότιας Αφρικής. Το παρακάτω σχήμα απεικονίζει την πτώση στη συχνότητα των θανάτων από κατάρρευση οροφής σήραγγας-η μεγαλύτερη αιτία τραυματισμού-από 0,14 ανα εκατομμύριο ωρών εργασίας τον Ιανουάριο του 2003 σε 0,05 ανα εκατομμύριο ωρών το 2011. Τραυματισμοί από την ίδια αιτία έπεσαν καια 51% από 1,41 ανα εκατομμύριο ώρες το 2003 σε 0,72 ανα εκατομμύριο ώρες τον Ιανουάριο του 2011. Θάνατοι και τραυματισμοί λόγω κατάρρευσης οροφής σε ορυχεία της Νότιας Αφρικής (RSA) (2003-2011)
Πηγή: αναπαραγωγή από (102) με άδεια της Δημοκρατίας της Νοτίου Αφρικής, Τομέας Παραγωγής Ορυχείων
Τραυματισμοί κατά τον αθλητισμό και την αναψυχή Κακώσεις νωτιαίου μυελού έχουν αναφερθεί σε διάφορες δραστηριότητες αθλητισμού και αναψυχής. Οι μηχανισμοί της ΚΝΜ στον αθλητισμό και την αναψυχή περιλαμβάνουν ■ Συγκρούσεις οχημάτων, όπως με μοτοσικλέτες, "γουρούνες" και αγωνιστικά αυτοκίνητα ■ Πτώσεις από ίδιο ύψος, όπως κατά τη διάρκεια
ράγκμπι και σκι ■ Πτώση, απώλεια της ισορροπίας, άλμα από ύψος μικρότερο του ενός μέτρου, όπως κατά την κατάδυση σε ρηχά νερά (βλέπε Πλαίσιο 3.5.), πτώση από ποδήλατο παιδικών διαστάσεων ■ Πτώση, απώλεια της ισορροπίας, άλμα, σπρώξιμο από ύψος μεγαλύτερο του ενός μέτρου ή περισσότερο όπως σε αναρρίχηση, αιωροπτερισμό, πτώση από άλογο ή πτώση από ποδήλατο ενηλίκου ή πτώση από εξοπλισμό παιδότοπου.
Πλαίσιο 3.5. Η κατάδυση ως αιτία κάκωσης νωτιαίου μυελού Η αυχενική ΚΝΜ -συχνή στο νευρολογικό ύψος Α4 με επακόλουθη τετραπληγία- είναι η πιο συχνή μορφή ΚΝΜ που σχετίζεται με κατάδυση (107-109). Αυτός ο τύπος τραυματισμού πιο συχνά παρατηρείται σε άνδρες κάτω των 35 ετών (110-112). Παράγοντες που σχετίζονται με ΚΝΜ κατά την κατάδυση περιλαμβάνουν την έλλειψη συνείδησης κι εκπαίδευσης καταδύτη, την κατάδυση σε ρηχά νερά (λιγότερο από 1,5 μέτρο), την έλλειψη ενδείξεων βάθους και κανονισμών ασφαλείας, χαρακτηριστικών του κεκκλιμένου δαπέδου σε πισίνες, και κατανάλωση αλκοόλ (111,113,114). Για παράδειγμα, 63% των ΚΝΜ σε χωνευτές πισίνες του Καναδά επήλθε λόγω πρόσκρουσης του δύτη στο κεκκλιμένο επίπεδο μεταξύ του ρηχού και του βαθέως άκρου της πισίνας (111). συνεχίζεται....
57
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
... συνέχεια
Οι σωστά σχεδιασμένες πισίνες με κατάλληλα σχεδιαστικά χαρακτηριστικά μπορούν να μειώσουν τον κίνδυνο ΚΝΜ. Σε ολυμπιακές πισίνες που έχουν ελάχιστο βάθος τα 2,7 μέτρα νερού κάτω από το βατήρα των καταδύσεων δεν έχει καταγραφεί κανένα περιστατικό ΚΝΜ εξαιτίας βουτιάς (114). Το 2010, η Διεθνής Κολυμβητική Ομοσπονδία εισήγαγε νέο ελάχιστο βάθος τα 3,2μέτρα από βατήρα 1 μέτρου, και 5 μέτρα από βατήρα 10 μέτρων σε Ολυμπιακές καταδυτικές εγκαταστάσεις (115). Έρευνες στην Αυστραλία δείχνουν ότι η εκπαίδευση (επτά 10λεπτες συνεδρίες) που να καλύπτει κατάλληλες καταδυτικές συνθήκες (π.χ. γνωστό βάθος νερού μεγαλύτερο από τρία μέτρα, απουσία αντικειμένων μέσα στο νερό, αποφυγή κατάδυσης σε πισίνες που βρίσκονται πάνω από το έδαφος) και στάσεις κατάδυσης (κλειδώνοντας τους αντίχειρες, εκτείνοντας τους βραχίονες πίσω από το κεφάλι και δεξιότητες χειρισμού και ολίσθησης) είναι αποτελεσματικά στη μείωση του βάθους κατάδυσης και στη δημιουργία ασφαλών θέσεων με τα χέρια και τους βραχίονες (116). Η παρακολούθηση μετά από τέτοιου είδους εκπαίδευση έδειξε ότι οι συμμετέχοντες διατήρησαν την πληροφορία και ότι οι καταδύσεις παρέμειναν χαμηλού βάθους 20 μήνες μετά το αρχικό πρόγραμμα εκπαίδευσης καταδύσεων (117,118) Τομείς κλειδιά που είναι απαραίτητο να βελτιωθούν ώστε να μειωθούν οι ΚΝΜ που σχετίζονται με καταδύσεις (111,114) περιλαμβάνουν τα παρακάτω: ■ Εθνικές και διεθνείς προδιαγραφές σχεδιασμού βασισμένες σε κριτήρια για ιδιωτικές και δημόσιες πισίνες πρέπει να θεσπιστούν και να εφαρμοστούν ώστε να ενισχυθεί η ασφάλεια των καταδύσεων ■ Οι πωλητές και οι αγοραστές οικιακών πισινών πρέπει να εκπαιδευτούν στην καταδυτική ασφάλεια, τονίζοντας τους κινδύνου μιας κατάδυσης και μίας βουτιάς με το κεφάλι σε ρηχά νερά ■ Ατομα σε κίνδυνο σε σχολεία και στην κοινότητα θα πρέπει να προσεγγιστούν μέσω συμβατικής εκπαίδευσης που να είναι βασισμένη σε κριτήρια σχετικά με την ασφάλεια στο νερό.
Η έρευνα έχει δείξει ότι οι αθλητικοί τραυματισμοί παγκοσμίως βρίσκονται μεταξύ 7% και 18% όλων των ΚΝΜ (119-121). Η πρόληψη των κακώσεων νωτιαίου μυελού στο
ράγκμπι αντιπροσωπεύει ένα χαρακτηριστικό παράδειγμα πρόληψης που έχει εφαρμοστεί επιτυχώς στο πλαίσιο ενός δημοφιλούς ομαδικού αθλήματος (βλέπε Πλαίσιο 3.6)
Πλαίσιο 3.6. Η Νέα Ζηλανδία χαράσσει το δρόμο στην πρόληψη της κάκωσης νωτιαίου μυελού που σχετίζεται με το ράγκμπι. Το ράγκμπι είναι ένα ομαδικό σπορ με μεγάλη σωματική επαφή μεταξύ των παικτών. Από τα μέσα της δεκαετίας του 1990 υπήρξε αυξημένη ευαισθητοποίηση σε λαούς που παίζουν ράγκμπι όπως η Νέα Ζηλανδία και η Νότιος Αφρική ως προς τους σοβαρούς μη θανατηφόρους τραυματισμούς, συμπεριλαμβανόμενης της ΚΝΜ, που μπορούν να συμβούν στο γήπεδο στη διάρκεια των αγώνων. Κατά συνέπεια, έγινε συλλογή δεδομένων (επιτήρηση τραυματισμών) για την ποσοτικοποίηση του προβλήματος. Η Επιτροπή για την Αποζημίωση Ατυχημάτων και η Ένωση Ράγκμπι της Νέας Ζηλανδίας συνεργάστηκαν με το όραμα « να σταματήσουν οι τραυματισμοί της σπονδυλικής στήλης στο πλαίσιο ενός αθλήματος υψηλής επαφής». Μία μελέτη των συνθηκών στις οποίες συμβαίνουν τραυματισμοί ταυτοποίησε τους ακόλουθους κινδύνους: φάσεις υψηλού κινδύνου στο παιχνίδι (το scrum, tackle, ruck/maul); συνθήκες υψηλού κινδύνου και συμπεριφορές, συμπεριλαμβανόμενης κακής φυσικής κατάστασης των παικτών, υψηλά tackles, χαμηλή θέση της κάτω γνάθου στη διάρκεια του tackle, και ανεπαρκή παροχή πρώτων βοηθειών εντός του γηπέδου (122). Η συχνότητα των ΚΝΜ στη διάρκεια του ράγκμπι στη Νέα Ζηλανδία μεταξύ 1976 και 2005 απεικονίζεται στο πρώτο σχεδιάγραμμα παρακάτω. Σε απάντηση σε αυτή την παρατήρηση, ένα συμβατικό προληπτικό πρόγραμμα ξεκίνησε στη Νέα Ζηλανδία και το οποίο ονομάσθηκε RugbuSmart.Περιελάμβανε τις ακόλουθες παρεμβάσεις: υποχρεωτικά φροντιστήρια για την ασφάλεια στους προπονητές, διαιτητές και παίκτες, υποχρεωτικά σεμινάρια στα οποία παρεχόταν πληροφορίες και πηγές πληροφόρησης σχετικά με την ασφάλεια, μία σχετική ιστοσελίδα και η παροχή εργαλείων πρόληψης όπως το δελτία διάσεισης για προπονητές και διαιτητές. Όλοι οι προπονητές ήταν υποχρεωμένοι να συμπληρώνουν το RugbySmart σε ετήσια βάση, με αποτέλεσμα το πρόγραμμα να φτάσει σε σχεδόν το 100% των διαιτητών και προπονητών της χώρας (123). Η εισαγωγή του RugbySmart σχετίστηκε με μείωση στη συχνότητα των ΚΝΜ, με οκτώ σπονδυλικούς τραυματισμούς μεταξύ των ετών 2001 και 2005 σε σύγκριση με 17 στη διαρκεια της περιόδου 1996-2000 (123). Όπως σημειώνεται στο δεύτερο διάγραμμα παρακάτω, αυτή η συχνότητα παρέμεινε χαμηλή, με κατά μέσο όρο δύο σοβαρούς τραυματισμούς ανα έτος για τα επόμενα 11 έτη στη διάρκεια των οποίων εφαρμόσθηκε το RugbySmart. συνεχίζεται....
58
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
... συνέχεια
Συχνότητα ΚΝΜ σχετιζόμενων με το ράγμπι ανάλογα με τις επικίνδυνες φάσεις του παιχνιδιού
Πηγή:
Μείωση των σοβαρών τραυματισμών που σχετίζονται με το ράγκμπι στη Νέα Ζηλανδία μετά την έναρξη του RygbySmart
Πηγή: Προσαρμογή από (124)κατόπιν άδειας από το RgbySmart, δημοσιευμένο από την Ένωση Ράγκμπι Νέας Ζηλανδίας σε συνεργασία με τον Οργανισμό Αποζημιώσεων Τραυμάτων Αυτή η προσέγγιση έχει έπίσης προσαρμοστεί για χρήση στη Νότιο Αφρική. ΤΟ BokSmart υιοθετήθηκε από την SARugby και το Ταμείο Παικτών το 2008. Αυτό οδήγησε σε βελτίωση της προπόνησης και της παροχής ιατρικής υποστήριξης ή εκπαιδευμένου προσωπικού ικανού να παρέχει πρώτες βοήθειες εντός του γηπέδου καθώς και εξοπλισμό για την πρόληψη της συσσώρευσης τραυμάτων εξαιτίας πτωχής άμεσης φροντίδας. Άλλες αλλαγές περιελάμβαναν βελτιώσεις στις προπονητικές οδηγίες και στην πολιτική επιλογής, αλλαγές στους κανόνες του παιχνιδιού (όπως κανόνες scrum engagement to introduce”crouch, touch, pause and engage”) και τη χρήση εξοπλισμού ασφαλείας (125).
59
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Όπως με τις περισσότερες εκπαιδευτικές παρεμβάσεις, ο βαθμός αποτελεσματικότητας παραμένει πεδίο αντιδικίας και συνεχιζόμενης έρευνας. Οι στρατηγικές πρόληψης περιλαμβάνουν την ελαχιστοποίηση του κινδύνου μέσω τυποποιημένων προδιαγραφών, παροχής εκπαίδευσης , εφαρμογής και τήρησης κατάλληλης νομοθεσίας και προδιαγραφών. Μία σύνοψη προληπτικών προσεγγίσεων για διάφορα αθλήματα φαίνεται στον πίνακα 3.5.
Φυσικές καταστροφές Πολλοί παράγοντες επηρεάζουν το βαθμό στον οποίο σεισμοί και άλλές φυσικές καταστροφές, όπως κατολισθήσεις κι εκρήξεις ηφαιστίων μπορούν να προκαλέσουν ΚΝΜ. Αυτοί περιλαμβάνουν τον τύπο των Πίνακας 3.5. Αθλημα
κτιρίων, το χρόνο κατα τον οποίο επισυμβαίνει η καταστροφή και την πυκνότητα πληθυσμού στην προσβεβλημένη περιοχή (131, 132). Ανθρωποι που βρίσκονται μέσα σε κτίρια φτιαγμένα από λίθους χωρίς συνδετική ύλη ή μη οπλισμένο σκυρόδεμα τη στιγμή ενός σεισμού διατρέχουν αυξημένο κίνδυνο να τραυματιστούν σε σύγκριση με εκείνους που βρίσκονται μέσα σε κτίρια με ξύλινο σκελετό (131). Οι σεισμοί που συμβαίνουν την ώρα που η πλειονότητα των ανθρώπων βρίσκεται μέσα σε επικίνδυνα κτίρια είναι πιο πιθανό να οδηγήσουν σε μεγάλο αριθμό τραυματισμών. Παρόλο που οι φυσικές καταστροφές μπορεί να μην προλαμβάνονται, η κατάρρευση των κτιρίων μπορεί να προληφθεί, για παράδειγμα μέσω εφαρμογής κατάλληλου πολεοδομικού κώδικα ωστε να διασφαλιστεί οτι η κατασκευή θα είναι ανθεκτική σε σεισμούς.
Σύνοψη παρεμβάσεων για την πρόληψη κάκωσης νωτιαίου μυελού σε αθλητικές δραστηριότητες Παρέμβαση που δουλεύει Υποσχόμενες, χρειάζεται και θα πρέπει να εφαρμοστεί περισσότερη αξιολόγηση ευρέως Υποχρεωτική εκπαίδευση ασφαλείας για προπονητές και διαιτητές (123) Ασφαλείς κανόνες για τις επικίνδυνες φάσεις (122,125) Εκπαίδευση και άσκηση σε μέτρα ασφαλίας , πχ Κώδικας Υπευθυνότητας Αλπινιστών (126), Καταγραφή κινδύνων πορείας σκιέρ και φράγματα κοντά σε κινδύνους (126) Γιλέκα ασφαλείας (127) Νομοθεσία και επιτήρηση για την Εκπαιδευτικές παρεμβάσεις, οδηγίες εφαρμογή ασφαλούς σχεδιασμού κατάδυσης (116-118, 128) πισίνας, πχ βάθος, φωτισμός, ύψος βατήρα και ελαστικότητα (114), απαγόρευση χρήσης αλκοόλ κοντά σε θαλάσσια σπορ Προδιαγραφές παιδικών χαρών για το ύψος του κατάλληλου επιφανειακού υλικού, ύψος του εξοπλισμού και συντήρηση (129) Έγκαιρη πρόσβαση σε θάλαμο αποσυμπίεσης (130) Η πρόσδεση στη σέλα των παιδιών ιππέων
Αναποτελεσματικές ή καταστροφικές, θα έπρεπε να αποθαρρύνονται
Ράγκμπι
Σκί και σνόουμπορντ
Ιππασία Καταδύσεις
Αθλήματα γηπέδου
Καταδύσεις ανοικτής θάλασσας
60
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
Συμπεράσματα και συστάσεις Η ΚΝΜ είναι σε μεγάλο βαθμό προβλέψιμη και δυνατόν να προληφθεί. Σημαντική έρευνα και εμπειρία κατα τα περασμένα 30 χρόνια έχει οδηγήσει σε παρεμβάσεις που αποδεδειγμένα μειώνουν την επίπτωση της ΚΝΜ εξαιτίας μίας ποικιλίας αιτιών -τροχαία ατυχήματα, πτώσεις, βία- και εξαιτίας δραστηριοτήτων όπως η εργασία και ο αθλητισμός. Το κενό μεταξύ του τι ξέρουμε πως είναι αποτελεσματικό και τι πραγματικά συμβαίνει δεν είναι αμελητέο. Παρά τις απόπειρες να βρεθούν και να καταγραφούν παραδείγματα καλών προγραμμάτων πρόληψης ΚΝΜ σε χώρες χαμηλού και μέσου εισοδήματος, αυτά είναι λίγα. Αυτό δε σημαίνει ότι οι παρεμβάσεις που παρουσιάζονται σε αυτό το κεφάλαιο δεν είναι αποτελεσματικές σε χώρες χαμηλού και μέσου εισοδήματος. Πολλές πράγματι είναι αποτελεσματικές. Οι στρατηγικές παρόλα αυτά πρέπει να ελεγχθούν και να προσαρμοστούν στα τοπικά δεδομένα και συνθήκες. Οι κυβερνήσεις αλλά και όσοι εμπλέκονται στην πρόληψη θα πρέπει να ενθαρύνονται να έχουν υπόψή τους, τους ακόλουθους τομείς δράσης: ■ Συνέχιση στην επένδυση σε προγράμματα πρωτογενούς πρόληψης που έχουν φανεί να είναι αποτελεσματικά, αναφορικά με την ΚΝΜ (π.χ. απαιτώντας υποχρεωτικές προδιαγραφές που καθορίζουν το ύψος σε προσκέφαλα οχημάτων). Ακόμα, να εφαρμόζουν συγκεκριμένες δράσεις για την πρόληψη ή τον έλεγχο των ΚΝΜ σε δραστηριότητες όπως τα επικίνδυνα επαγγέλματα και αθλήματα (π.χ. εκπαιδευτικά προγράμματα για πρόληψη τραυματισμών κατα το ράγκμπι). ■ Ενίσχυση του συστήματος υγείας για την ταυτο-
■ ■
■
■
ποίηση και θεραπεία των ανθρώπων που βρίσκονται σε κίνδυνο για μη τραυματική ΚΝΜ που σχετίζεται με μεταδοτικά νοσήματα και διατροφικές ανεπάρκειες. Αύξηση της γνώσης για την πρόληψη της ΚΝΜ με τρόπο που δεν υποβιβάζει αυτούς που ήδη έχουν ΚΝΜ Ορισμός προτεραιοτήτων για την έρευνα πάνω στην πρόληψη της ΚΝΜ. Πολλές παρεμβάσεις πρόληψης που είχαν ευρεία εφαρμογή στερούνται ισχυρής επιστημονικής βάσης (π.χ. μαθήματα κατάδυσης). Η ανάλυση των παραγόντων κινδύνου και η αξιολόγηση των παρεμβάσεων είναι απαραίτητες για να προσδιοριστεί ποιές παρεμβάσεις είναι αποτελεσματικές και επομένως θα έπρεπε να προωθούνται, και ποιές είναι αναποτελεσματικές ή επικίνδυνες και θα έπρεπε να αποφεύγονται. Η εμπλοκή όλων των αρμόδιων φορέων και ενδιαφερόμενων. Η πρόληψη της ΚΝΜ περιλαμβάνει τη συνεργασία πολλαπλών τομέων -όπως υποδομές, υγεία, βιομηχανία, αθλητισμό κι εκπαίδευση- για να αντιμετωπιστούν οι διάφορες αιτίες, δραστηριότητες ή περιβάλλοντα που σχετίζονται με ΚΝΜ. Ένας φορέας πρέπει να ηγηθεί για να διασφλιστεί οτι η εφαρμογή θα προχωρήσει και οτι οι συνεισφορές όλων των τομέων χρησιμοποιούνται και έχουν συνέχεια. Να ενθαρρύνουν τους υπεύθυνους φορείς για τα προγράμματα πρόληψης να συνεργάζονται με τους ερευνητές ωστε τα δεδομένα επίπτωσης να ενημερώνουν τις στρατηγικές πρόληψης και οι ερευνητές να εμπλέκονται στην παρακολούθηση και αξιολόγηση των προγραμμάτων πρόληψης που προκύπτουν.
Βιβλιογραφία 1. 2. 3. 4. Tharion G, Nagarajan G, Bhattacharji S, eds. Prevention of spinal cord injury. In: Guidelines for care of persons with spinal cord injury in the community. Vellore, Christian Medical College. 2009. Shakespeare T. Still a health issue. Disability and Health Journal, 2012, 5:129-131. doi: http://dx.doi.org/10.1016/j. dhjo.2012.04.002 PMID:22726851 United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr. org/english/law/disabilities-convention.htm, accessed 9 May 2012) Wang CC. Portraying stigmatized conditions: disabling images in public health. Journal of Health Communication, 1998, 3:149-159. doi: http://dx.doi.org/10.1080/108107398127436 PMID:10977251
61
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
5.
6. 7. 8. 9. 10. 11. 12. 13. 14. 15.
16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27.
NSCISC. Annual report for the spinal cord injury model systems:2008 Birmingham, AL, National Spinal Cord Injury Statistical Centre, 2008 (https://www.nscisc.uab.edu/PublicDocuments/reports/pdf/2008%20NSCISC%20Annual%20Statistical%20 Report%20%20Complete%20Public%20Version.pdf, accessed 9 April 2012). Henley G. Spinal cord injury, 1999−2005. NISU brieÞng No. 14, Cat. No. INJCAT 124. Canberra, Australian Institute of Health and Welfare, 2009 (http://www.aihw.gov.au/publication-detail/?id=6442468241, accessed 9 April 2012). Sekhon LH, Fehlings MG. Epidemiology, demographics, and pathophysiology of acute spinal cord injury. Spine, 2001, 26 Suppl:S2S12. doi: http://dx.doi.org/10.1097/00007632-200112151-00002 PMID:11805601 Haddon W. Advances in the epidemiology of injuries as a basis for public health policy. Public Health Reports, 1980, 95:411- 421. PMID:7422807 Peden M et al., eds. World report on road traffic injury prevention. Geneva, World Health Organization, 2004. WHO. Global status report on road safety: time for action. Geneva, World Health Organization, 2009 (www.who.int/violence_injury_prevention/road_safety_status/2009, accessed 9 April 2012). Newton J. Road safety - Partnership programme. Shared responsibility. Western Australia, Office of Road Safety, 2008. OECD. Towards zero. Ambitious road safety targets and the safe system approach. Paris, Organisation for Economic Co-operation and Development, 2008 (http://www.oecd-ilibrary.org/transport/towards-zero_9789282101964-en, accessed 5 May 2012). Rasouli MR. Preventing motor vehicle crashes related spine injuries in children. World Journal of Pediatrics, 2011, 7:311-317. doi: http://dx.doi.org/10.1007/s12519-011-0327-z PMID:22015724 Elvik R. Area-wide urban tra␣c calming schemes: a meta-analysis of safety effects. Accident; Analysis and Prevention, 2001, 33:327336. doi: http://dx.doi.org/10.1016/S0001-4575(00)00046-4 PMID:11235794 Mohan D, Tiwari G. Road safety in low-income countries: issues and concerns regarding technology transfer from high-income countries. In: Reflections on the transfer of traffic safety knowledge to motorising nations. Melbourne, Global Traffic Safety Trust, 1998:27Ð56. O’Connor PJ, Brown D. Relative risk of spinal cord injury in road crashes involving seriously injured occupants of light passenger vehicles. Accident; Analysis and Prevention, 2006, 38:1081-1086. doi: http://dx.doi.org/10.1016/j.aap.2006.04.013 PMID:16756930 Haworth N et al. Characteristics of fatal single vehicle crashes. Report 120. Clayton, Monash University Accident Research Centre, 1997. McElhaney JH et al. Biomechanical aspects of cervical trauma. In: Nahum AM, Melvin JW, eds. Accidental injury-biomechanics and prevention. 2nd ed. New York, NY, Springer-Verlag, 2002. Viano DC, Chantal S, Parenteau CS. Analysis of head impacts causing neck compression injury. Traffic Injury Prevention, 2008, 9:144-152. doi: http://dx.doi.org/10.1080/15389580801894940 PMID:18398778 O’Neill B. Preventing passenger vehicle occupant injuries by vehicle design − a historical perspective from IIHS. Traffic Injury Prevention, 2009, 10:113-126. doi: http://dx.doi.org/10.1080/15389580802486225 PMID:19333823 MacLennan PA et al. Vehicle rollover risk and electronic stability control systems. Injury Prevention, 2008, 14:154-158. doi: http://dx.doi.org/10.1136/ip.2007.016576 PMID:18523106 European Road Safety Observatory. eSafety. Brussels, European Commission, 2006 (http://ec.europa.eu/transport/wcm/ road_safety/erso/knowledge/Fixed/04_esave/esafety.pdf, accessed 21 March 2012). Corben B et al. The general effectiveness of countermeasures for crashes into fixed roadside objects. Report 111. Clayton, Monash University Accident Research Centre, 1997. Soloman L, Warwick D, Nayagam S. Apley’s system of orthopaedics and fractures, 8th ed. London, Arnold, 2001. Viano DC. Seat design principles to reduce neck injuries in rear impacts. Tafffc Injury Prevention , 2008, 9:552-560. doi: http://dx.doi.org/10.1080/15389580802381939 PMID:19058102 Farmer CM et al. Relationship of dynamic seat ratings to real-world neck injury rates. Traffic Injury Prevention , 2008, 9:561- 567. doi: http://dx.doi.org/10.1080/15389580802393041 PMID:19058103 Fitzharris M et al. Crash-based evaluation of Australian Design Rule 69: (Full FrontalIimpact Occupant Protection). Canberra, Australian Transport Safety Bureau, 2006 (http://www.infrastructure.gov.au/roads/safety/publications/2006/pdf/ Grant_Report200603. pdf?bcsi_scan_C7A381BA8BD8A412=0&bcsi_scan_Þlename=Grant_Report200603.pdf, accessed 21 March 2012).
62
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
Morris A, Welsh R, Frampton R. An overview of requirements for the crash protection of older drivers. Annu Proc Assoc Adv Automto Med, 2002, 46:141-156. 29. Ferguson SA, Schneider LW. An overview of frontal air bag performance with changes in frontal crash-test requirements: findings of the Blue Ribbon Panel for the evaluation of advanced technology air bags. Traffic Injury Prevention , 2008, 9:421431. doi: http://dx.doi.org/10.1080/15389580802046250 PMID:18836952 30. Lie A et al. Intelligent seat belt reminders do they change driver seat belt use in Europe? Traffic Injury Prevention , 2008, 9:446-449. doi: http://dx.doi.org/10.1080/15389580802149690 PMID:18836955 31. Winston FK, Durbin D. When “buckle up” is not enough: enhancing the safety of children in motor vehicles. Leonard Davis Institute Issue Brief, 2000, 5:1-4. 32. Achildi O, Betz RR, Grewal H. Lapbelt injuries and the seatbelt syndrome in pediatric spinal cord injury. The Journal of Spinal Cord Medicine, 2007, 30 Suppl. 1:S21-S24. PMID:17874682 33. Durbin DR et al. Effects of seating position and appropriate restraint use on the risk of injury to children in motor vehicle crashes. Pediatrics, 2005, 115:e305-e309. doi: http://dx.doi.org/10.1542/peds.2004-1522 PMID:15741356 34. Liu BC et al. Helmets for preventing injury in motorcycle riders. Cochrane database of systematic reviews, 2008, 23:CD004333. 35. Zaza S et al. Reviews of evidence regarding interventions to increase use of child safety seats. American Journal of Preventive Medicine, 2001, 21 Suppl:31-47. doi: http://dx.doi.org/10.1016/S0749-3797(01)00377-4 PMID:11691560 36. National Highway Traffic Safety Administration. Traffic safety facts 2004: occupant protection. Washington, DC, National Highway Traffic Safety Administration, 2004. 37. Ian R et al. School based driver education for the prevention of traffic crashes. Cochrane database of systematic reviews, 2001, 3:CD003201. PMID:11687049 38. Dellinger A et al. Interventions to prevent motor vehicle injuries. In: Doll L et al., eds. Handbook of injury and violence prevention. New York, NY, Springer, 2007:55Ð79. 39. Cummings P et al. Air bags and passenger fatality according to passenger age and restraint use. Epidemiology (Cambridge, Mass.), 2002, 13:525-532. doi: http://dx.doi.org/10.1097/00001648-200209000-00007 PMID:12192221 40. Passmore JW et al. The formulation and implementation of a national helmet law: a case study from Viet Nam. Bulletin of the World Health Organization, 2010, 88:783-787. doi: http://dx.doi.org/10.2471/BLT.09.071662 PMID:20931064 41. Elvik R, Vaa T, eds. The handbook of road safety measures. Amsterdam, Elsevier Science Ltd, 2004. 42. Bunn F et al. Area-wide traffic calming for preventing traffic related injuries. Cochrane database of systematic reviews, 2003, 1:CD003110. PMID:12535454 43. Hedlund J, Compton R. Graduated driver licensing research in 2004 and 2005. Journal of Safety Research, 2005, 36:109-119. doi: http://dx.doi.org/10.1016/j.jsr.2005.02.001 PMID:15896351 44. Stevenson M et al. Reducing the burden of road tra␣c injury: translating high-income country interventions to middle-income and low-income countries. Injury Prevention, 2008, 14:284-289. doi: http://dx.doi.org/10.1136/ip.2008.018820 PMID:18836043 45. Hoque MF, Grangeon C, Reed K. Spinal cord lesions in Bangladesh: an epidemiological study 1994−1995. Spinal Cord, 1999, 37:858-861. doi: http://dx.doi.org/10.1038/sj.sc.3100938 PMID:10602529 46. Jumah KB, Nyame PK. Relationship between load carrying on the head and cervical spondylosis in Ghanaians. West African Journal of Medicine, 1994, 13:181-182. PMID:7841112 47. JŠger HJ et al. Degenerative changes in the cervical spine and load-carrying on the head. Skeletal Radiology, 1997, 26:475-481. doi: http://dx.doi.org/10.1007/s002560050269 PMID:9297752 48. Demura S et al. Selection of useful items for fall risk screening for community dwelling Japanese elderly from the perspective of fall experience, physical function, and age level di␣erences. Archives of Gerontology and Geriatrics, 2011, 53:123-130. doi: http://dx.doi.org/10.1016/j.archger.2010.11.012 PMID:21131069 49. Spiegel CN, Lindaman FC. Children can’t fly: a program to prevent childhood morbidity and mortality from window falls. American Journal of Public Health, 1977, 67:1143-1147. doi: http://dx.doi.org/10.2105/AJPH.67.12.1143 PMID:596496 50. Barlow B et al. Ten years of experience with falls from a height in children. Journal of Pediatric Surgery, 1983, 18:509-511. doi: http://dx.doi.org/10.1016/S0022-3468(83)80210-3 PMID:6620098
28.
63
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
51. 52. 53. 54. 55. 56. 57. 58. 59.
60.
61.
62.
63. 64. 65. 66. 67. 68. 69. 70. 71. 72.
Peden M et al., eds. World report on child injury prevention. Geneva, World Health Organization, 2008. Cripps RA et al. A global map for traumatic spinal cord injury epidemiology: towards a living data repository for injury prevention. Spinal Cord, 2011, 49:493-501. doi: http://dx.doi.org/10.1038/sc.2010.146 PMID:21102572 Krug E et al., eds. World report on violence and health. Geneva, World Health Organization, 2002. Zeilig G et al. Civilian spinal cord injuries due to terror explosions. Spinal Cord, 2010, 48:814-818. doi: http://dx.doi. org/10.1038/sc.2010.22 PMID:20309003 WHO. Guns, knives, and pesticides: reducing access to lethal means. Geneva, World Health Organization, 2009. Wee JYM, Schwarz R. An international comparative study assessing impairment, activities, and participation in spinal cord injury rehabilitation Ð a pilot study. Asia PaciÞc Disability Rehabilitation Journal, 2004, 15:42-52. Staudinger R, Henry K. Remission of HIV myelopathy after highly active antiretroviral therapy. Neurology, 2000, 54:267-268. doi: http://dx.doi.org/10.1212/WNL.54.1.267 PMID:10636172 Jutte PC, van Loenhout-Rooyackers JH. Routine surgery in addition to chemotherapy for treating spinal tuberculosis. Cochrane Database of Systematic Reviews, 2006, 25:CD004532. CD004532.pub2 WHO/FAO/UNICEF/GAIN/MI/ FFI. Recommendations on wheat and maize ßour fortification. Meeting Report: Interim Consensus Statement. Geneva, World Health Organization, 2009 (http://www.who.int/nutrition/publications/micronutrients/wheat_ maize_fort.pdf accessed 28 May 2012). De-Regil LM, Fern‡ndez-Gaxiola AC, Dowswell T, Pe–a-Rosas JP. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database of Systematic Reviews, 2010, 6:(10)CD007950. Review. PubMed PMID: 20927767 PMID:20927767 Toriello HV. Policy and Practice Guideline Committee of the American College of Medical Genetics. Policy state-ment on folic acid and neural tube defects. Genetics in Medicine, 2011, 13:593-596. doi: http://dx.doi.org/10.1097/ GIM.0b013e31821d4188 PMID:21552133 Fernandez-Gaxiola AC, De-Regil LM. Intermittent iron supplementation for reducing anaemia and its associated impair-ments in menstruating women. Cochrane Database of Systematic Reviews, 2011, 7:(12)CD009218. Review. PubMed PMID: 22161448 PMID:22161448 WHO. Guideline: Intermittent iron and folic acid supplementation in menstruating women. Geneva, World Health Organization, 2011. Godlwana L et al. Incidence and profile of spinal tuberculosis in patients at the only public hospital admitting such patients in KwaZuluNatal. Spinal Cord, 2008, 46:372-374. doi: http://dx.doi.org/10.1038/sj.sc.3102150 PMID:18317491 Moon MS. Tuberculosis of the spine. Controversies and a new challenge. Spine, 1997, 22:1791-1797. doi: http://dx.doi. org/10.1097/00007632-199708010-00022 PMID:9259793 Dye C, Williams BG. The population dynamics and control of tuberculosis. Science, 2010, 328:856-861. doi: http://dx.doi. org/10.1126/science.1185449 PMID:20466923 Chaudhary M et al. Diagnosis of tuberculosis in an era of HIV pandemic: a review of current status and future prospects. Indian Journal of Medical Microbiology, 2010, 28:281-289. doi: http://dx.doi.org/10.4103/0255-0857.71805 PMID:20966555 Rasit AH, Razak M, Ting FS. The pattern of spinal tuberculosis in Sarawak General Hospital. The Medical Journal of Malaysia, 2001, 56:143-150. PMID:11771073 Harries AD et al. The HIV-associated tuberculosis epidemic − when will we act? Lancet, 2010, 375:1906-1919. doi: http:// dx.doi.org/10.1016/S0140-6736(10)60409-6 PMID:20488516 Cormican L et al. Current difficulties in the diagnosis and management of spinal tuberculosis. Postgraduate Medical Journal, 2006, 82:46-51. doi: http://dx.doi.org/10.1136/pgmj.2005.032862 PMID:16397080 Maccauro G et al. Physiopathology of spine metastasis − review article. International Journal of Surgical Oncology, 2011,Article ID:107969, 8 pages doi: http://dx.doi.org/10.1155/2011/107969 PMID:22312491 George R et al. Interventions for the treatment of metastatic extradural spinal cord compression in adults. Cochrane Database of Systematic Reviews, 2008, 4:CD006716. CD006716.pub2 PMID:18843728
64
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
73.
74. 75. 76. 77. 78. 79. 80. 81. 82. 83. 84. 85. 86. 87.
88.
89.
90. 91. 92. 93.
Molina CA, Gokaslan Z, Sciubba D. A systematic review of the current role of minimally invasive spine surgery in the management of metastatic spine disease. International Journal of Surgical Oncology, 2011, doi: http://dx.doi. org/10.1155/2011/598148 PMID:22312514 Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 Nikkila A, Rydhstrom H, Kallen B. The incidence of spina bifida in Sweden 1973Ð2003: the effect of prenatal diagnosis. European Journal of Public Health, 2006, 16:660-662. doi: http://dx.doi.org/10.1093/eurpub/ckl053 PMID:16672253 Orioli IM et al. Effects of folic acid fortification on spina bifida prevalence in Brazil. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:831-835. doi: http://dx.doi.org/10.1002/bdra.20830 PMID:21630426 Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 Centers for Disease Control and Prevention. Recommendations for the use of folic acid to reduce the number of cases of spina bifida and other neural tube defects. MMWR. Morbidity and Mortality Weekly Report, 1992, 41(RR-14):1-7. Crider KS, Bailey L, Berry R. Folic acid food fortification - its history, effect, concerns, and future directions. Nutrients, 2011, 3:370384. Ray JG et al. Association of neural tube defects and folic acid food fortification in Canada. Lancet, 2002, 360:2047-2048. doi: http://dx.doi.org/10.1016/S0140-6736(02)11994-5 PMID:12504403 Flour Fortification Initiative website (http://www.␣network.org/country_profiles/index.php, accessed 17 May 2013). Cornel MC, de Smit DJ, de Jong-van den Berg LTW. Folic acid - the scientific debate as a base for public policy. Reproductive Toxicology (Elmsford, NY), 2005, 20:411-415. doi: http://dx.doi.org/10.1016/j.reprotox.2005.03.015 PMID:15978774 Centers for Disease Control and Prevention. Racial/ethnic differences in the birth prevalence of spina bifida Ð United States, 1995Ð2005. MMWR. Morbidity and Mortality Weekly Report, 2009, 57:1409-1413. PMID:19129744 Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the e␣ect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 Barboza Arguello ML, Umana Solis LM. Impact of the fortification of food with folic acid on neural tube defects in Costa Rica. Revista Panamericana de Salud Pœblica, 2011, 30:1-6. PMID:22159644 De Wals P et al. Reduction in neural-tube defects after folic acid fortification in Canada. The New England Journal of Medicine, 2007, 357:135-142. doi: http://dx.doi.org/10.1056/NEJMoa067103 PMID:17625125 L—pez-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. [Ð Chile]. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 Lopez-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. [Ð Argentina]. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 Sayed AR et al. Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2008, 82:211-216. doi: http://dx.doi. org/10.1002/bdra.20442 PMID:18338391 Persad VL et al. Incidence of open neural tube defects in Nova Scotia after folic acid fortification. Canadian Medical Association Journal, 2002, 167:241-245. PMID:12186168 Flour Fortification Initiative. FFI Database. Atlanta, 2012 (http://www.sph.emory.edu/wheatßour/globalmap.php, accessed 28 may 2012). Williams LJ et al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995Ð2002. Pediatrics, 2005, 116:580586. doi: http://dx.doi.org/10.1542/peds.2005-0592 PMID:16140696 Berry RJ, Bailey L, Mulinare J, Bower C. Folic Acid Working Group. Fortification of flour with folic acid. Food and Nutrition Bulletin, 2010, 31:(1 Suppl)S22-35. Review. PubMed PMID: 20629350 PMID:20629350
65
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
94. 95. 96. 97. 98. 99. 100. 101.
102.
103. 104. 105. 106. 107. 108. 109. 110. 111.
112. 113. 114.
Rofail D et al. Factors contributing to the success of folic acid public health campaigns. Journal of Public Health, 2012, 34:90-99. doi: http://dx.doi.org/10.1093/pubmed/fdr048 PMID:21727078 O’Connor P. Work related spinal cord injury, Australia 1986Ð1997. Injury Prevention, 2001, 7:29-34. doi: http://dx.doi. org/10.1136/ip.7.1.29 PMID:11289531 Correa GI et al. Work-related traumatic spinal cord lesions in Chile, a 20-year epidemiological analysis. Spinal Cord, 2011, 49:196199. doi: http://dx.doi.org/10.1038/sc.2010.71 PMID:20548320 Sanmiquel L et al. Analysis of work related accidents in the Spanish mining sector from 1982−2006. Journal of Safety Research, 2010, 41:1-7. doi: http://dx.doi.org/10.1016/j.jsr.2009.09.008 PMID:20226944 Hodous TK, Layne LA. Injuries in the mining industry. Occupational Medicine, 1993, 8:171-184. PMID:8456346 Boden LI. Government regulation of occupational safety: underground coal mine accidents 1973−75. American Journal of Public Health, 1985, 75:497-501. doi: http://dx.doi.org/10.2105/AJPH.75.5.497 PMID:3985237 ILO. Social and labour issues in small-scale mines, Geneva, International Labour Organization, 1999, (http://www.ilo.org/ public/english/dialogue/sector/techmeet/tmssm99/tmssmr.htm, accessed 5 October 2012) ILO. Accelerating action against child labour. Report of the Director-General, International Labour Conference, 99th session, 2010, Geneva, International Labour Organization (http://www.ilo.org/global/resources/WCMS_126752/lang--en/index. htm, accessed 5 October 2012). Department of Mineral Resources. 2003Ð2011 Falls of ground. Pretoria, Republic of South Africa, Department of Mineral Resources, 2011 (http://www.dmr.gov.za/publications/summary/134-2003 Ñ 2011/410-2003-2011falls-of-ground-acci-dentsgraph.html, accessed 15 March 2012). ILO. Code of practice on safety and health in underground coalmines. Meeting of Experts on Safety and Health in Coal Mines, Geneva, 8−13 May 2006. Geneva, International Labour Organization, 2006. ILO. Code of practice on safety and health in agriculture. Meeting of Experts to Adopt a Code of Practice on Safety and Health in Agriculture, Geneva, 25−29 October 2010. Geneva, International Labour Organization, 2010. Stout NA, Linn HI. Occupational injury prevention research: progress and priorities. Injury Prevention, 2002, 8 Suppl 4:IV9-IV14. doi: http://dx.doi.org/10.1136/ip.8.suppl_4.iv9 PMID:12460949 Litchfield MH. Agricultural work related injury and ill-health and the economic cost. Environmental Science and Pollution Research International, 1999, 6:175-182. doi: http://dx.doi.org/10.1007/BF02987623 PMID:19009396 Amorim EC et al. Spine trauma due to diving: main features and short-term neurological outcomes. Spinal Cord, 2011, 49:206-210. doi: http://dx.doi.org/10.1038/sc.2010.79 PMID:20625383 Vlok AJ et al. Shallow-water spinal injuries − devastating but preventable. South African Medical Journal, 2010, 100:682-684. PMID:21081000 Ye C et al. Pattern of sports- and recreation-related spinal cord injuries in Beijing. Spinal Cord, 2009, 47:857-860. doi: http:// dx.doi.org/10.1038/sc.2009.49 PMID:19436265 Aito S, D’Andrea M, Werhagen L. Spinal cord injuries due to diving accidents. Spinal Cord, 2005, 43:109-116. doi: http:// dx.doi.org/10.1038/sj.sc.3101695 PMID:15558081 Barss P et al. Risk factors and prevention for spinal cord injury from diving in swimming pools and natural sites in Quebec, Canada: a 44-year study. Accident; Analysis and Prevention, 2008, 40:787-797. doi: http://dx.doi.org/10.1016/j.aap.2007.09.017 PMID:18329434 Korres DS et al. Diving injuries of the cervical spine in amateur divers. The Spine Journal, 2006, 6:44-49. doi: http://dx.doi. org/10.1016/j.spinee.2005.06.013 PMID:16413447 WHO. Guidelines for safe recreational water environments. Volume 2: Swimming pools and similar environments. Geneva, World Health Organization, 2006. Cusimano MD, Mascarenhas AM, Manoranjan B. Spinal cord injuries due to diving: a framework and call for prevention. The Journal of Trauma, 2008, 65:1180-1185. doi: http://dx.doi.org/10.1097/TA.0b013e3181826e09 PMID:19001991
66
Κεφάλαιο 3 Πρόληψη της Κάκωσης Νωτιαίου Μυελού
115. FINA. Facilities rules, No. 5: Diving Facilities. Lausanne, Federation Internationale de Natation (International Swimming Federation), 2010 (http://www.fina.org/H2O/index.php?option=com_content&view=article&id=368:fr-5-diving-facilities&catid=88:facilitiesrules&Itemid=184, accessed 14 March 2012). 116. Blitvich JD, McElroy GK, Blanksby BA. Risk reduction in diving spinal cord injury: teaching safe diving skills. Journal of Science and Medicine in Sport, 2000, 3:120-131. doi: http://dx.doi.org/10.1016/S1440-2440(00)80074-2 PMID:11104304 117. Blitvich JD et al. Retention of safe diving skills. Journal of Science and Medicine in Sport, 2003, 6:155-165. doi: http://dx.doi. org/10.1016/S1440-2440(03)80251-7 PMID:12945622 118. Blitvich JD et al. Long term retention of safe diving skills. Journal of Science and Medicine in Sport, 2003, 6:348-354. doi: http://dx.doi.org/10.1016/S1440-2440(03)80029-4 PMID:14609152 119. Knœtsd—ttir S et al. Epidemiology of traumatic spinal cord injuries in Iceland from 1975 to 2009. Spinal Cord, 2012, 50:123-126. doi: http://dx.doi.org/10.1038/sc.2011.105 PMID:21946442 120. Furlan JC et al. Assessment of disability in patients with acute traumatic spinal cord injury: a systematic review of the literature. Journal of Neurotrauma, 2011, 28:1413-1430. doi: http://dx.doi.org/10.1089/neu.2009.1148 PMID:20367251 121. Boran S et al. A 10-year review of sports-related spinal injuries. Irish Journal of Medical Science, 2011, 180:859-863. doi: http://dx.doi.org/10.1007/s11845-011-0730-4 PMID:21792709 122. NZRU. RugbySmart. Wellington, New Zealand Rugby Union (http://www.nzrugby.co.nz/the_game/safety/rugbysmart, accessed 9 April 2012). 123. Quarrie KL et al. Effect of nationwide injury prevention programme on serious spinal injuries in New Zealand rugby union: ecological study. British Medical Journal, 2007, 334:1150. doi: http://dx.doi.org/10.1136/bmj.39185.605914.AE PMID:17513314 124. NZRU/ACC. RugbySmart DVD. New Zealand Rugby Union in conjunction with Accident Compensation Corporation, 2012. 125. BokSmart. Winners play smart rugby. Cape Town, The BokSmart National Rugby Safety Program, 2009 (http://www. sarugby.co.za/boksmart/, accessed 9 April 2012). 126. Ackery A et al. An international review of head and spinal cord injuries in alpine skiing and snowboarding. Injury Prevention, 2007, 13:368-375. doi: http://dx.doi.org/10.1136/ip.2007.017285 PMID:18056311 127. Hessler C et al. Spine injuries due to horse riding accidents Ð an analysis of 30 cases [article in German]Sportverletzung Sportschaden, 2011, 25:93-96. doi: http://dx.doi.org/10.1055/s-0029-1245831 PMID:21611912 128. Bhide VM, Edmonds V, Tator C. Prevention of spinal cord injuries caused by diving: evaluation of the distribution and usage of a diving safety video in high schools. Injury Prevention, 2000, 6:154-156. doi: http://dx.doi.org/10.1136/ip.6.2.154 PMID:10875676 129. WHO/UNICEF. World report on child injury prevention. Geneva, World Health Organization and United Nations ChildrenÕs Fund, 2008. 130. Louge P et al. Current management of diving-related spinal cord decompression sickness in 2010 [article in French]. La Presse Medicale, 2010, 39:778-785. doi: http://dx.doi.org/10.1016/j.lpm.2010.02.049 PMID:20466511 131. PAHO. Natural disasters Ð protecting the public’s health. Washington, DC, Pan American Health Organization, 2000. 132. PAHO. Earthquake in Haiti: PAHO/WHO situation report on health activities post earthquake. Pan American Health Organization, 2010 (http://reliefweb.int/sites/reliefweb.int/Þles/resources/Full_Report_3342.pdf, accessed 5 May 2012).
67
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
68
Κεφάλαιο 4 Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
69
"Στην ηλικία των 15 ετών διαγιγνώστηκα με οξεία λεμφοβλαστική λευχαιμία και άλλες επιπλοκές. Μετά τα 16α γενέθλιά μου στο νοσοκομείο, ανέπτυξα ταχέως εξελισσόμενη παραπληγία με αισθητικό επίπεδο Θ6 και νευρογενείς διαταραχές κύστης και εντέρου. Η αιτία της παραπληγίας παραμένει άγνωστη. Ωστόσο, η πιθανότερη εξήγηση είναι πως ήταν παρενέργεια της χημειοθεραπείας. Κατόπιν ιατρικής περίθαλψης στο σπίτι συνεχούς και πλήρους αιματολογικής ύφεσης, ήμουν αρκετά καλά τον Ιούλιο του 1990 ώστε να ακολουθήσω πρόγραμμα αποκατάστασης σε μονάδα εξειδικευμένη σε βλάβες του νωτιαίου μυελού. Η ζωή εκεί ήταν δύσκολη. Επειδή ήμουν η νεότερη γυναίκα ασθενής, δεν είχα τη δυνατότητα στήριξης και επαφής με άλλους του ιδίου φύλου και ηλικίας για να συζητάω. Η έντονη επιθυμία μου να φύγω από την κλινική ήταν η έμπνευσή μου για σκληρή δουλειά ώστε να μάθω να ζω με το αναπηρικό αμαξίδιο. Μετά από τρεις μήνες, ήμουν ικανή να γυρίσω στο σπίτι και να ζω πιο ανεξάρτητη". (Anne, Αυστραλία) "Στην μονάδα εντατικής θεραπείας ξύπνησα έχοντας μπροστά μου το πρόσωπο ενός ανθρώπου, ενός γιατρού με μούσι. Με σχεδόν απειλητικό αλλά απόλυτο τρόπο μού δήλωσε ότι θα έπρεπε να ξέρω πως δεν θα περπατήσω ξανά. Τον κοίταξα με προβληματισμό και αμφισβήτηση. Ήθελε να του απαντήσω ότι τον κατάλαβα– αλλά ήμουν σοκαρισμένος και αρκετά αδαής για το θέμα της κάκωσης του νωτιαίου μυελού. Δεν είχα απολύτως καμιά ιδέα για το τι σήμαινε αυτό αλλα και να ήξερα, δεν θα πίστευα ότι έπρεπε να μου πουν εκείνη τη στιγμή ποια ήταν η πρόγνωση, διότι δε θα μπορούσα να το διαχειριστώ. Ήταν πολύ νωρίς για μια τέτοια καταδίκη…". (Joanna, Νέα Ζηλανδία) "Όλοι ενθαρρυνόμαστε για καθημερινή άσκηση, γιατί λοιπόν θα έπρεπε μια κάκωση νωτιαίου μυελού να μας κάνει διαφορετικούς από τους άλλους; Θεωρώ ότι, προσπαθώντας να ασκηθώ ενεργά με βοηθάει να αποφεύγω πολλές πιθανές επιπλοκές που θα με επηρεάσουν και να διατηρώ το σώμα και το μυαλό́ μου για τώρα αλλά και για το μέλλον. Η βόλτα στον περίβολο ή στην παραλία με τη σύζυγο και τα παιδιά μου με το αμαξίδιο που ελέγχω με το σαγόνι μου, είναι η αγαπημένη μου εξάσκηση". (Brad, Αυστραλία) "Ακολουθούσα καθημερινό πρόγραμμα θεραπείας, το οποίο μου πρόσφερε ανακούφιση. Αγάπησα τις νοσοκόμες, ειδικά εκείνη που μου δίδαξε τη φροντίδα της κύστης και του εντέρου μου (ακόμα θυμάμαι ότι είχα ένα μόνιμο καθετήρα). Χρειαζόταν να είμαι σε πολύ ψηλό κρεβάτι για να ελαττώνω τα ηλεκτροσόκ που προκαλούσε η παρουσία κάποιου κοντά μου ή όταν ακουμπούσε το κρεβάτι μου. Έμαθα τεχνικές για να πλένομαι, να μεταφέρω τον εαυτό μου και να χρησιμοποιώ το αμαξίδιο. Τα όρια μεταξύ των νοσηλευομένων στη μονάδα βλαβών νωτιαίου μυελού εξαφανίστηκαν γρή́γορα, καθώς το παντελόνι εκείνων που τολμούσαν να σηκωθούν όρθιοι θα έπεφτε μέχρι τους αστραγάλους και οι υπόλοιποι θα γελούσαμε ώσπου δεν υπήρχε κάτι για να γελάμε". (Angela, Ουκάντα) "Απέκτησα τη λιθίαση της κύστης μετά το εξιτήριό μου από το νοσοκομείο πριν από δύο χρόνια και έκανα εισαγωγή για την χειρουργική αφαίρεσή της. Το έλκος πίεσης στο ισχίο μου εμφανιζόταν κάθε φορά που καθυστερούσα να αλλάξω θέση. Τώρα προσέχω ιδιαίτερα για την πρόληψη των ελκών κατάκλισης και των λοιμώξεων του ουροποιητικού σύμφωνα με τις οδηγίες των ιατρών αποκατάστασης. Θα προσπαθήσω να διατηρήσω την υγεία μου σε καλό επίπεδο, αλλά δε μπορώ να το υποσχεθώ". (Chen, Κίνα) 70
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης Τραυματική ή μη τραυματική στην προέλευσή της η κάκωση νωτιαίου μυελού (ΚΝΜ) είναι μία πολύ σημαντική νοσηρή κατάσταση. Πάντα ταυτίζεται με μεγάλες αλλαγές στη ζωή του πάσχοντα, αλλά δε χρειάζεται να υποσκάπτει τις δυνατότητές του για καλή και ολοκληρωμένη ζωή. Το κοινωνικό αντίκτυπο της ΚΝΜ δεν εξαρτάται τόσο από τη βαρύτητα ή το επίπεδο της βλάβης, όσο από κοινωνικούς και περιβαλλοντικούς παράγοντες, ιδιαίτερα δε από τη διαθεσιμότητα κατάλληλης και προσβάσιμης φροντίδας υγείας. Με την κατάλληλη φροντίδα η ΚΝΜ δε χρειάζεται να είναι μια τελειωτική κατάσταση ούτε χρειάζεται να αποτελεί εμπόδιο για κάποιον από το να μορφωθεί, να εργάζεται, να αποκτήσει οικογένεια, να έχει επιτυχημένη και παραγωγική ζωή. Σε αντίθεση με τα ακόλουθα κεφάλαια που ασχολούνται με άλλα κοινωνικά εμπόδια και τρόπους διευκόλυνσης, το παρόν κεφάλαιο αναφέρεται στη φροντίδα υγείας και την αποκατάσταση με εφαρμογή βοηθητικών τεχνολογιών. Η Σύμβαση των Ηνωμένων Εθνών για τα Δικαιώματα των Ατόμων με Αναπηρία (CRPD) καθιερώνει το ανθρώπινο δικαίωμα των ατόμων με ανικανότητα στο δυνατόν υψηλότερο επίπεδο υγείας στο άρθρο 25, στην παροχή αποκατάστασης (συμπεριλαμβανομένων και των βοηθητικών τεχνολογιών) στο άρθρο 26 και μετακίνηση (συμπεριλαμβανομένων και των βοηθητικών τεχνολογιών) στο άρθρο 20 (1). Το παρόν κεφάλαιο αναλύει την επιρροή που μπορεί να έχει η ΚΝΜ στην υγεία κάποιου, τις επιπλοκές που μπορεί να αντιμετωπίσουν και πως μπορούν αυτές να ξεπεραστούν μέσω των τριών φάσεων – κλειδιά στην παροχή ιατρικής φροντίδας, δηλαδή: ■ προνοσοκομειακή και οξεία φάση - η ανάγκη να εξασφαλιστεί η επιβίωση και η σταθεροποίηση. Χωρίς τη σωστή αρχική αντιμετώπιση, η ΚΝΜ μπορεί να είναι απειλητική για τη ζωή και να υπονομεύει τη δυνατότητα λειτουργικότητας και ανεξαρτησίας στο μέλλον. ■ υγειονομική περίθαλψη και υπηρεσίες αποκατάστασης στην υποξεία φάση - να εξασφαλιστεί η μέγιστη δυνατή λειτουργικότητα του ατόμου και η μεγαλύτερη δυνατή ανεξαρτησία του ώστε να επιστρέψει στην εκπαίδευση ή την εργασία του. Οι κατάλληλες βοηθητικές συσκευές είναι ζωτικής σημασίας για να επιτευχθεί αυτό. Η έλλειψη πρόσβασης στην αποκατάσταση και σε βοηθητικές συσκευές, το άτομο με ΚΝΜ έχει λίγες πιθανότητες να συμμετέχει ενεργά στο κοινωνικό σύνολο. ■ συνεχής παροχή ιατρικής φροντίδας - ώστε το εν λόγω άτομο να αποφύγει ή να επιβιώσει των επιπλοκών της ΚΝΜ, όπως ουρολοιμώξεις, έλκη πίεσης, τραυματισμοί υπέρχρησης και να παραμείνει υγιές διάγοντας μακράς διάρκειας επιβίωση. Χωρίς πρόσβαση σε βασικές παροχές υγείας, ένα άτομο με ΚΝΜ είναι εκτεθειμένο σε πρώιμο θάνατο. Λόγω περιορισμών στην έκταση του βιβλίου, το κεφάλαιο δε μπορεί να αναφερθεί σε όλες τις ανάγκες φροντίδας για τους ανθρώπους με ΚΝΜ. Σκοπός είναι η ενημέρωση των φορέων που κα71
4
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
θορίζουν την πολιτική και τις υπηρεσίες υγείας για τις πιθανές επιπλοκές της ΚΝΜ και τις βασικές υπηρεσίες που απαιτούνται κατά τα τρία στάδια φροντίδας.
Κατανοώντας την επίδραση στην υγεία της Κάκωσης Νωτιαίου Μυελού Η νευρολογική βλάβη τόσο από την τραυματική όσο και από την μη τραυματική ΚΝΜ διακόπτει τη μεταφορά της αισθητικής πληροφορίας από την περιφέρεια στον εγκέφαλο και της κινητικής πληροφορίας κατά την αντίθετη κατεύθυνση κάτω από το επίπεδο της βλάβης. Η επιρροή της ΚΝΜ στη λειτουργικότητα θα εξαρτηθεί από το επίπεδο και τη βαρύτητα της βλάβης και την διαθέσιμη παροχή φροντίδας υγείας. Τα διεθνή πρότυπα για νευρολογική κατηγοριοποίηση της κάκωσης του νωτιαίου μυελού (International Standards for Neurological Classification of Spinal Cord Injury) χρησιμοποιούνται συχνά σε δομές υγειονομικής περίθαλψης για να περιγραφεί η έκταση της βλάβης (συμπεριλαμβανομένου του είδους και του επίπεδου της βλάβης) σε μια συστηματοποιημένη βάση αισθητικής και κινητικής εκτίμησης της νευρολογικής λειτουργίας (2). Η ΚΝΜ διακρίνεται σε δύο κατηγορίες όσον αφορά στη βαρύτητα (2) της βλάβης: ■ Πλήρης βλάβη – οι ασθενείς με πλήρη βλάβη δεν έχουν αισθητικότητα ή κινητικότητα κάτω από το επίπεδο της βλάβης και ειδικά στα Ι4-Ι5 νευροτόμια. ■ Ατελής βλάβη – οι ασθενείς με ατελή βλάβη διατηρούν κάποια λειτουργικότητα (δηλ. αισθήσεων και μυών) κάτω από το νευρολογικό επίπεδο της βλάβης, συμπεριλαμβανομένων των κατώτερων νωτιαίων ιερών νευροτομίων Ι4-Ι5. Υπάρχουν διάφοροι τύποι ατελούς βλάβης ΚΝΜ, όπως πρόσθιο, κεντρικό και οπίσθιο νωτιαίο σύνδρομο, το σύνδρομο Brown-Sequard, τα οποία μπορεί να επηρεάσουν την υπολειπόμενη λειτουργικότητα. Το επίπεδο στο οποίο βλάφτηκε ο νωτιαίος μυελός καθορίζει ποια μέλη του σώματος μπορεί να επηρεαστούν από την παράλυση, δηλ. απώλεια λειτουργικότητας μυών και αισθητικότητας (2): ■ Παραπληγία – αναφέρεται σε βλάβη θωρακικής 72
(Θ2-Θ12), οσφυϊκής (Ο1-Ο5) ή ιερής (Ι1-Ι5) μοίρας της σπονδυλικής στήλης, που συμπεριλαμβάνουν τον μυελικό κώνο (το περιφερικότερο τμήμα του νωτιαίου μυελού) ή στην ιππουρίδα (συλλογή των νευρικών ριζών που εκπορεύονται από το νωτιαίο μυελό στο επίπεδο Ι1-Ι2). Έχει σαν αποτέλεσμα απώλεια ελέγχου των κάτω άκρων και του κορμού σε διάφορο βαθμό χωρίς την συμμετοχή των άνω άκρων. Για παράδειγμα, άτομα με πλήρη βλάβη μεταξύ Θ2 και Θ8 επιπέδου δε θα έχουν καλό έλεγχο κορμού, λόγω απώλειας κινητικού ελέγχου των κοιλιακών μυών και πλήρη απώλεια λειτουργίας των κάτω άκρων. Άτομα με πλήρη βλάβη αλλά σε χαμηλότερο επίπεδο (μεταξύ Θ9 και Θ 12) θα έχουν καλό έλεγχο του κορμού και της κοιλιακής χώρα και πλήρη απώλεια λειτουργικότητας στα κάτω άκρα. Τέλος, άτομα με βλάβη της οσφυικής και ιερής μοίρας θα έχουν μερικό έλεγχο στα κάτω άκρα. Στην εικόνα 1.1 του κεφάλαιου 1 απεικονίζεται ο εντοπισμός των διάφορων τμημάτων της σπονδυλικής στήλης. ■ Τετραπληγία – χρησιμοποιείται για την περιγραφή μιας βλάβης στα αυχενικά μυελοτόμια της σπονδυλικής στήλης, δηλ. μεταξύ Α1 και Θ1 επιπέδων. Ανάλογα με τη βαρύτητα και το επίπεδο της βλάβης, η τετραπληγία καταλήγει σε διαφορετικούς βαθμούς απώλειας λειτουργικότητας στο λαιμό, τον κορμό, τα άνω και τα κάτω άκρα. Για παράδειγμα, άτομα με πλήρη βλάβη επιπέδου Α1-Α3 θα είναι σε εξάρτηση από μηχανική υποστήριξη της αναπνοής. Άτομα με πλήρη βλάβη επιπέδου Α5 θα έχουν έλεγχο του ώμου/βραχίονα, αλλά όχι στον καρπό/άκρα χείρα. Άτομα με πλήρη βλάβη επιπέδου Α6 θα έχουν τη δυνατότητα έκτασης του καρπού αλλά καμιά λειτουργία στο χέρι και στα δάκτυλα. Τέλος, άτομα με πλήρη βλάβη Α7- Α8 επιπέδων θα έχουν τη δυνατότητα ελέγχου των άνω άκρων αλλά θα αντιμετωπίζουν δυσκολίες με την επιδεξιότητα της άκρας χείρας/δακτύλων. Επιπρόσθετα της απώλειας κινητικότητας και αισθητικότητας, η ΚΝΜ επηρεάζει τη λειτουργία του αυτόνομου νευρικού συστήματος του σώματος, καταλήγοντας σε πολλαπλές ανικανότητες όπως απώλεια της λειτουργίας του εντέρου, της κύστης ή της γενετήσιας λειτουργίας (3). Επιπλέον, τα άτομα με ΚΝΜ αν-
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
τιμετωπίζουν εμπόδια και περιορισμούς στις δραστηριότητες σε πολλούς τομείς όπως κινητικότητα (π.χ. αλλαγή θέσης, μεταφορά, βάδιση), προσωπική υγιεινή και φροντίδα (π.χ. μπάνιο, ντύσιμο, σίτιση, τουαλέτα), οικιακές δραστηριότητες (π.χ. καθάρισμα, μαγείρεμα, φροντίδα άλλων προσώπων), μόρφωση, εργασία, διατήρηση κοινωνικών σχέσεων και συμμετοχή σε δραστηριότητες αναψυχής (4).
Πιθανές επιπτώσεις Τα άτομα με ΚΝΜ διατρέχουν τον κίνδυνο ποικίλων δευτερογενών καταστάσεων, οι οποίες μπορεί να γίνουν κύρια αιτία νοσηρότητας και θνησιμότητας. Ενώ μερικές από αυτές προκύπτουν στην προνοσοκομειακή και οξεία φάση μετά την κάκωση, άλλες μπορεί να προκύψουν σε οποιοδήποτε στάδιο. Υπάρχουν στοιχεία ότι με την κατάλληλη διαχείριση πολλές από αυτές τις δευτερογενείς καταστάσεις είναι δυνατόν να αποφευχθούν.
Κυκλοφορικό σύστημα Αυτόνομη δυσαντανακλαστικότητα: Αυτή η κατάσταση χαρακτηρίζεται από απότομη αύξηση της αρτηριακής πίεσης και προκύπτει κυρίως σε άτομα με ΚΝΜ άνωθεν του επιπέδου Θ6 (5). Άλλα σημεία και συμπτώματα περιλαμβάνουν έντονη κεφαλαλγία, εφίδρωση, εξέρυθρο δέρμα (flushed), θολή όραση, ανασήκωση των τριχών του δέρματος, καρδιακές αρρυθμίες (5-7). Αιτίες ενεργοποίησης αποτελεί οποιοδήποτε επιβλαβές ερέθισμα, συχνότερα μια διατεταμμένη ή αποφραγμένη κύστη ή έντερο. Η αυτόνομη δυσαντανακλαστικότητα είναι μια επείγουσα κατάσταση, η οποία αν παραμείνει χωρίς θεραπεία, μπορεί να έχει σοβαρές συνέπειες όπως εγκεφαλικό, κρίσεις επιληψίας ή θάνατος. Εκπαίδευση που να αφορά σε στρατηγικές πρόληψης και διαχείρισης είναι αναγκαία για όλα τα άτομα με τετραπληγία ή ψηλού επιπέδου παραπληγία, όπως επίσης και για την οικογένειά τους ή τους φροντιστές τους (6). Εν τω βάθει φλεβοθρόμβωση (ΕΒΦΘ): Άτομα με ΚΝΜ διατρέχουν μεγάλο κίνδυνο για ΕΒΦΘ, ειδικά κατά την οξεία και υποξεία φάση της βλάβης, οπότε οι αλλαγές από τον φυσιολογικό νευρολογικό έλεγχο των αγγείων και η ακινησία μπορεί να οδηγήσουν σε στάση (8). Επιπρόσθετους παράγοντες κινδύνου απο-
τελούν η ηλικία, η παχυσαρκία, η συνύπαρξη καταγμάτων των κάτω άκρων, η εγκυμοσύνη και ιστορικό προηγούμενης ΕΒΦΘ. Τα σημεία και συμπτώματα περιλαμβάνουν: πόνο, οίδημα, ευαισθησία, δυσχρωματισμό δέρματος και αύξηση της θερμοκρασίας του πάσχοντος μέλους (8). Η ΕΒΦΘ μπορεί να οδηγήσει σε πνευμονική εμβολή και πιθανόν σε θάνατο οπότε απαιτείται άμεση θεραπεία με αντιπηκτική αγωγή (8). Προληπτικά μέτρα όπως αντιπηκτική αγωγή και η χρήση καλτσών διαβαθμισμένης συμπίεσης είναι μέγιστης σημασίας και θα έπρεπε να αποτελούν μέρος της πολιτικής του γενικού νοσοκομείου (8, 9). Υπόταση: ορθοστατική υπόταση ονομάζουμε μια σημαντική πτώση στην αρτηριακή πίεση όταν ένας άνθρωπος μετακινείται από την κλινήρη στην όρθια θέση. Επηρεάζει άτομα με τετραπληγία και παραπληγία και είναι συχνή στην οξεία φάση της βλάβης, ενώ ορισμένα συμπτώματα μπορεί να εξακολουθούν να εμφανίζονται και αργότερα (10, 11). Τα συμπτώματα τυπικά περιλαμβάνουν αίσθημα κούρασης, ζάλη, θολή όραση, μυική αδυναμία, και προσωρινή απώλεια συνείδησης (12). Η αντιμετώπιση περιλαμβάνει στενή παρακολούθηση, σταδιακές αλλαγές στη θέση και ,όποτε κρίνεται απαραίτητο, παροχή αγωγής και ταμπλέτες άλατος (13).
Γεννητικό-Ουροποιητικό σύστημα Λοιμώξεις ουροποιητικού (UTIs): Οι λοιμώξεις του ουροποιητικού είναι συχνές στα άτομα με ΚΝΜ και έχουν ενοχοποιηθεί ως βασική αιτία επανεισαγωγής σε νοσοκομείο στις χώρες υψηλού εισοδήματος και πρώιμου θανάτου σε αναπτυσσόμενες χώρες (6, 14-16). Η ΚΝΜ επηρεάζει την λειτουργία της ουροδόχου κύστης και πολλοί ασθενείς χρησιμοποιούν τον καθετηριασμό της ως αντιμετώπιση (βλ.παρακάτω). Υπάρχουν στοιχεία ότι ο τρόπος αντιμετώπισης της κύστης και το είδος των καθετήρων που χρησιμοποιούνται μπορεί να επηρεάζουν τον κίνδυνο εμφάνισης της ουρολοίμωξης (14, 16). Άλλοι παράγοντες που έχουν συσχετιστεί με αυξημένο κίνδυνο εμφάνισης ουρολοίμωξης είναι η πρόσληψη υγρών, η προσωπική υγιεινή, η εγκυμοσύνη, συστήματα κοινωνικής βοήθειας και η πρόσβαση σε υπηρεσίες υγείας (17). Ευδιάκριτα σημεία και συμπτώματα της ουρολοίμωξης περιλαμβάνουν επεισόδια ακράτειας, πόνος κατά την ούρηση, θολερότητα ούρων με δυσοσμία, πυ73
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
ρετός, αδιαθεσία, λήθαργος, καθώς και επίταση άλλων συμπτωμάτων που σχετίζονται με την ΚΝΜ όπως αυξημένη σπαστικότητα, νευροπαθητικός πόνος και αυτόνομη δυσαντανακλαστικότητα (6, 15, 16). Εργαστηριακές εξετάσεις (γενική και καλλιέργεια ούρων) χρησιμοποιούνται ως επιβεβαίωση της ουρολοίμωξης και για τον καθορισμό της καλύτερης θεραπείας (6, 15, 16). Η αποφυγή των ουρολοιμώξεων είναι ο κυριότερος στόχος της διαχείρισης της κύστης. Εκπαίδευση σε καλές τεχνικές καθετηριασμού και περιποίησης είναι αναγκαία. Άλλοι τρόποι αντιμετώπισης περιλαμβάνουν προγραμματισμένη επανεξέταση, ικανοποιητική πρόσληψη υγρών, καλό επίπεδο προσωπικής υγιεινής και σωστή φροντίδα εξαρτημάτων που χρησιμοποιούνται για τη διαχείριση της κύστης (6, 15).
Νευρομυικό σύστημα Σπαστικότητα / σπασμοί: Η σπαστικότητα είναι κοινή δευτεροπαθής κατάσταση σε άτομα με ΚΝΜ (13, 18). Μπορεί να οδηγήσει σε ακούσιες κινήσεις και στην ανάπτυξη συγκάμψεων στις αρθρώσεις, οι οποίες περιορίζουν το εύρος κίνησης και επομένως εμποδίζουν τη λειτουργικότητά τους. Τρόπους αντιμετώπισης αποτελούν: παθητική κίνηση ή διατάσεις (εφαρμοζόμενη από φυσικοθεραπευτές, από τον ίδιο τον ασθενή ή μέσω συγκεκριμένης τοποθέτησης του μέλους με νάρθηκα και/ή γύψο), ενεργητική κίνηση και άσκηση, εφαρμογή ρεύματος, μηχανικών ή θερμικών ερεθισμάτων για διέγερση νεύρων και μυών και αντισπαστική φαρμακευτική αγωγή (18-20). Οστεοπόρωση κάτω από το επίπεδο της βλάβης: Την ΚΝΜ ακολουθεί άμεσα απώλεια οστικής μάζας, αυξάνοντας έτσι τον κίνδυνο για οστεοπόρωση κάτω από το επίπεδο της βλάβης (21). Δίαιτα ανεπαρκής σε ποσότητα και ποιότητα ασβεστίου και βιταμίνης D, γήρανση και έλλειψη δραστηριότητας μπορούν επίσης να συμβάλλουν σε αλλαγές στην πυκνότητα του οστού (21). Αν υπάρχει οστεοπόρωση, άτομα με ΚΝΜ διατρέχουν μεγαλύτερο κίνδυνο καταγμάτων τα οποία μπορούν να υποστούν κατά τις δραστηριότητες της καθημερινότητας, όπως οι μεταφορές. Δεδομένης της άμεσης απώλειας οστικής μάζας μετά την ΚΝΜ, η έγκαιρη παρέμβαση για την υγεία των οστών είναι ιδιαίτερα σημαντική. Παραδείγματα παρεμβάσεων αποτελούν: διφωσφονικά (φάρμακα για την πρόληψη ή τη θεραπεία της ελάττωσης της οστικής μάζας), μαζί 74
με βιταμίνη D και/ή ασβέστιο, δραστηριότητες με επίδραση της βαρύτητας, ηλεκτρικός ερεθισμός. Ωστόσο, στοιχεία που να αφορούν στην αποτελεσματικότητα της θεραπείας είναι περιορισμένα (21-25). Ετερότοπη Οστεοποίηση: είναι η ανάπτυξη οστού εντός των μαλακών στοιχείων πέριξ μιας άρθρωσης κάτωθεν του επιπέδου της βλάβης ΚΝΜ. Οι αρθρώσεις που συνήθως προσβάλλονται είναι τα ισχία, τα γόνατα και σε περίπτωση αυχενικής βλάβης, οι ώμοι και οι αγκώνες (13). Η ετερότοπη οστεοποίηση περιορίζει το εύρος κίνησης στις αρθρώσειςκαι επομένως μπορεί να επηρεάσει σε μεγάλο βαθμό στο τελικό λειτουργικό αποτέλεσμα των ατόμων με ΚΝΜ. Η έγκαιρη ανίχνευσή της μέσω της σάρωσης των οστών με ραδιοϊσότοπα ή ακτινογραφίες είναι σημαντική. Καθώς η αιτιολογία της ετερότοπης οστεοποίησης δεν είναι ξεκάθαρη, η διαχείρισή της αποτελεί πρόκληση. Τα περιορισμένα μέχρι στιγμής στοιχεία προτείνουν την έναρξη θεραπείας με αντιφλεγμονώδη ως αποτελεσματική στον περιορισμό της πιθανότητας εμφάνισής της. Η φαρμακευτική θεραπεία και η ακτινοβολία μπορεί να βοηθήσουν στον περιορισμό της εξέλιξής της και η χειρουργική θεραπεία μπορεί να φανεί χρήσιμη στη βελτίωση του εύρους κινητικότητας των επηρεασμένων αρθρώσεων (26).
Αναπνευστικό σύστημα Αναπνευστική λειτουργία: Η χωρητικότητα των πνευμόνων, η ευκολία της αναπνευστικής λειτουργίας και η ικανότητα βήχα τέτοιου ώστε να αποσυρθούν οι αποχρέμψεις βλάπτονται συνήθως μετά από την ΚΝΜ ως αποτέλεσμα της παράλυσης των αναπνευστικών μυών (27, 28). Τα άτομα που πάσχουν από τετραπληγία με υψηλό επίπεδο βλάβης είναι ιδιαίτερα ευπαθή. Ειδικά τα άτομα με βλάβη άνωθεν του Α3; μπορεί να χρειαστούν συνεχή μηχανική υποστήριξη της αναπνοής ή εμφύτευση βηματοδότη φρενικού νεύρου ή διαφράγματος για να διατηρείται ικανοποιητική αναπνοή (2931). Κάποιοι ασθενείς μπορεί να φέρουν τραχειοστόμιο κατά την οξεία φάση ώστε να εξασφαλίζεται ο επαρκής αερισμός και να διευκολύνεται ο καθαρισμός των εκκρίσεων (13). Αναπνευστικές επιπλοκές: Η πνευμονία, η ατελεκτασία ("πνεύμονας που έχει καταρρεύσει"), η εισρόφηση και η αναπνευστική ανεπάρκεια παραμένουν μείζονες αιτίες νοσηρότητας και θνησιμότητας σε
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
άτομα με ΚΝΜ. Ωστόσο, με καλή διαχείριση, αυτές οι επιπλοκές μπορούν να αποφευχθούν. Προληπτικά μέτρα αποτελούν ο ετήσιος εμβολιασμός για τη γρίππη, ο εμβολιασμός για τον πνευμονιόκοκκο κάθε πέντε έτη, έγκαιρη θεραπεία των λοιμώξεων του ανώτερου αναπνευστικού με αντιβιοτικά και πρώιμη επιβολή επιβοηθούμενου βήχα για άτομα με ΚΝΜ υψηλής βλάβης. Η μακροχρόνια αντιμετώπιση απαιτεί: συστηματική αξιολόγηση και εκτίμηση της αναπνευστικής και πνευμονικής λειτουργίας, μηχανική υποστήριξη της αναπνοής για μικρό ή μεγάλο χρονικό διάστημα, εκπαίδευση αναπνευστικών μυών, αεροβική άσκηση, ψυχολογική υποστήριξη για την ανάπτυξη δεξιοτήτωνα αντιμετώπισης, ιδιαίτερα για τους εξαρτώμενους από αναπνευστήρα και ειδική εκπαίδευση για τους ασθενείς και τις οικογένειές τους (29). Σε ορισμένες περιπτώσεις ένας βηματοδότης μπορεί να εμφυτευθεί για να ερεθίζονται νεύρα και μύες κλειδιά (π.χ. το διάφραγμα) ώστε να δοθεί η δυνατότητα για αναπνοή ελεύθερη αναπνευστήρα (29, 32).
Πόνος Τα περισσότερα άτομα με ΚΝΜ αντιμετωπίζουν χρόνιο πόνο, που μπορεί να έχει σημαντική επιρροή στην ποιότητα της ζωής τους (13, 33-35). Η Διεθνής ΤαξινόΠλαίσιο 4.1. Ορισμοί
μηση Πόνου για την Κάκωση Νωτιαίου Μυελού έχει πρόσφατα αναπτυχθεί για να βοηθήσει τους κλινικούς ιατρούς και τους ερευνητές να κατηγοριοποιούν τον πόνο μετά την ΚΝΜ (36, 37). Ένα σημαντικό ποσοστό των ατόμων με ΚΝΜ πάσχουν από νευροπαθητικό πόνο ως αποτέλεσμα της βλάβης στον νωτιαίο μυελό, που χαρακτηρίζεται από αίσθημα καύσους, μαχαιριάς, άλγους, τρυπήματος και/ή ηλεκτρικού ρεύματος (13, 33, 38). Άτομα με ΚΝΜ μπορεί επίσης να πάσχουν από μυοσκελετικό πόνο ως αποτέλεσμα υπέρχρησης, π.χ. ωμαλγία από την συνεχή χειροκίνητη προώθηση του αμαξιδίου, μυικών σπασμών, μηχανικής ανισορροπίας ή κακής στάσης (39). Η εμπειρία του πόνου είναι διαφορετική για κάθε ασθενή και γι’αυτό θα πρέπει να μελετώνται και βιοϊατρικοί, πολιτισμικοί και ψυχοκοινωνικοί παράγοντες (35, 40-42). Τα προγράμματα αντιμετώπισης του πόνου απαιτούν διεπιστημονική προσέγγιση, τα οποία μπορεί να περιλαμβάνουν τρόπους όπως φάρμακα, άσκηση, μάλαξη, βελονισμός, ψυχοθεραπεία, διαλογισμός και ανάπαυση, παροχή βοηθητικής τεχνολογίας (βλ. Πίνακα 4.1 για ορισμούς) αναθεώρηση και τροποποίηση των συστημάτων καθίσματος και εκπαίδευση για εναλλακτικούς τρόπους διεξαγωγής/διεκπεραίωσης δραστηριοτήτων όπως οι μεταφορές (13, 33, 34, 38).
Βοηθητική τεχνολογία: Ορίζεται ως "οποιοδήποτε είδος εξοπλισμού, ή προϊόν, είτε αποκτάται έτοιμο , τροποποιείται, ή προσαρμόζεται και το οποίο χρησιμοποιείται για να αυξήσει, να διατηρήσει, ή να βελτιώσει τις λειτουργικές ικανότητες των ατόμων με αναπηρία" (43). Τροποποίηση περιβάλλοντος: Η πρόσβαση στο φυσικό περιβάλλον επηρεάζει τόσο τη λειτουργική απόδοση των ατόμων με αναπηρία όσο και τη δυνατότητά τους να χρησιμοποιούν ορισμένα είδη βοηθητικού εξοπλισμού. Τροποποιήσεις στο περιβάλλον, είτε επικεντρωμένες σε προσωπικό επίπεδο (όπως η τοποθέτηση λαβής για τη μεταφορά προς και από το κάθισμα της τουαλέτας, ή η προσαρμογή της πόρτας ώστε να χωράει το αμαξίδιο) ή σε ευρύτερο πλαίσιο (όπως ράμπες και ανελκυστήρες σε δημόσια κτίρια) μπορούν να βοηθήσουν κάθε έναν ξεχωριστά να ξεπεράσει εμπόδια στο σπίτι, στο σχολείο και στην εργασία. Παγκόσμιου σχεδιασμού και κοινότοπη τεχνολογία: Παγκόσμιος σχεδιασμός ορίζεται στο CRPD ως "ο σχεδιασμός προϊόντων, χώρων, προγραμμάτων και υπηρεσιών ώστε να μπορούν να χρησιμοποιηθούν από όλους τους ανθρώπους το δυνατόν περισσότερο χωρίς να υπάρχει η ανάγκη για προσαρμογή ή εξειδικευμένο σχεδιασμό…" (1). Ενώ ο τομέας αυτός είναι περισσότερο επικεντρωμένος σε προϊόντα ειδικά σχεδιασμένα για χρήση από άτομα με ΚΝΜ, είναι σημαντικό να γνωρίζουμε ότι υπάρχουν διαθέσιμα στην αγορά τεχνολογικά προϊόντα με παγκοσμίως χρησιμοποιούμενα χαρακτηριστικά τα οποία μπορούν επίσης να είναι χρήσιμα (π.χ. κινητά τηλέφωνα, ηλεκτρονικοί υπολογιστές και οικιακές συσκευές). Βλ. Κεφ.7 για περισσότερες λεπτομέρειες. Αρμόζουσα τεχνολογία: Αυτός ο όρος περιγράφει την τεχνολογία που είναι κατάλληλη για τις ανάγκες των χρηστών στο δικό τους περιβάλλον (44, 45). Περιλαμβάνει τεχνολογία αποδεκτή από τους χρήστες της, παρέχει αρμόζουσα προσαρμογή και όποτε χρήζει στήριξη θέσης, είναι ασφαλής και ανθεκτική, διαθέσιμη στη χώρα και μπορεί να αποκτηθεί και να συντηρηθεί με ανεκτό κόστος (45).
75
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Δέρμα Έλκη πίεσης: Άτομα με ΚΝΜ διατρέχουν μεγάλο κίνδυνο ανάπτυξης ελκών κατάκλισης ως αποτέλεσμα ελαττωματικής αισθητικότητας και κινητικότητας. Η παρεμβολή άλλων συμπεριφορικών, κοινωνικο-δημογραφικών και ιατρικών παραγόντων – κάπνισμα, διατροφικές ελλείψεις (κακή διατροφή, ελλειμματικό σωματικό βάρος, αναιμία), λοιμώξεις, υγρασία από εφίδρωση ή ακράτεια, ή συν-νοσηρές καταστάσεις όπως διαβήτης και πνευμονικές λοιμώξεις – μπορούν να αυξήσουν τον κίνδυνο ανάπτυξης ελκών κατάκλισης (4648). Τα έλκη κατάκλισης μπορεί να εμφανιστούν σε οποιαδήποτε στιγμή και να επηρεάσουν σημαντικά την κατάσταση της υγείας, τη λειτουργικότητα και την ποιότητα της ζωής (46) καθώς και να αποτελέσουν σημαντικό εμπόδιο στο σύστημα φροντίδας λόγω της συχνής και παρατεταμένης νοσηλείας (49). Η πρόληψη εμφάνισης των ελκών κατάκλισης είναι από τις πιο σημαντικές παραμέτρους της φροντίδας υγείας των ατόμων με ΚΝΜ και είναι αποδοτικότερη της θεραπείας (47). Ως εκ τούτου, τα άτομα με ΚΝΜ και η οικογένειά τους χρήζουν εκπαίδευσης και εξάσκησης σε τεχνικές διαχείρισης ως κομμάτι της φροντίδας για την υπόλοιπη ζωή τους (47, 50). Η πρόληψη περιλαμβάνει απλά μέτρα όπως συχνοί έλεγχοι του δέρματος, μέθοδοι που ανακουφίζουν από την πίεση, επαρκής φροντίδα κύστης και εντέρου, παροχή κατάλληλων βοηθητικών συσκευών, και καλή διατροφή (46-48, 51). Τα θεραπευτικά μέτρα μπορεί να περιλαμβάνουν κατάλληλη περιποίηση των ελκών, μέτρα άρσης της πίεσης, αντιβιοτικά για τις επιμολύνσεις, και χειρουργική αντιμετώπιση (46-48, 50)
Ανάγκες υγειονομικής περίθαλψης Προνοσοκομειακή αντιμετώπιση στην οξεία φάση Η παρεχόμενη φροντίδα του πρώτου 24ώρου και των πρώτων ημερών μετά την ΚΝΜ είναι κριτικής σημασίας και μπορεί να επηρεάσει σημαντικά το τελικό αποτέλεσμα του τραυματισμένου (51). Η διαχείριση πριν την εισαγωγή στο νοσοκομείο απαιτεί γρήγορη αξιολόγηση, συμπεριλαμβανομένης της μέτρησης των ζωτικών σημείων και του επιπέδου συνείδησης, αντιμετώπιση της βλάβης, που σημαίνει σταθεροποί76
ηση ζωτικών λειτουργιών, ακινητοποίηση της σπονδυλικής στήλης για διαφύλαξη της νευρολογικής λειτουργίας έως ότου επιτευχθεί μόνιμη σταθερότητά της και έλεγχος αιμορραγίας, θερμοκρασίας και πόνου; και έγκαιρη κι ασφαλή πρόσβαση στο σύστημα φροντίδας υγείας (48, 51-55). Τα άτομα με ΚΝΜ θα πρέπει ιδανικά να φθάσουν σε δομή οξείας αντιμετώπισης εντός δύο ωρών από τη βλάβη (54). Παρεμβάσεις στην οξεία φάση, επιπρόσθετα των τεχνικών που εφαρμόζονται σε όλες τις περιπτώσεις μειζόνων τραυματισμών (π.χ. χορήγηση υγρών, παροχέτευση κύστης, παρακολούθηση και καταγραφή των ζωτικών σημείων) έχουν στόχο: την αντιμετώπιση κατά προτεραιότητα των απειλητικών για τη ζωή τραυματισμών ώστε να εξασφαλιστεί η επιβίωση, την αντιμετώπιση των τραυματισμών που μπορούν δυνητικά να επιφέρουν αναπηρία ώστε να περιοριστεί η έκταση της ανικανότητας και η ελαχιστοποίηση του πόνου και της ψυχολογικής επιβάρυνσης (54). Ακριβής διάγνωση της ΚΝΜ και των όποιων συνυπαρχόντων καταστάσεων (π.χ. κάκωση εγκεφάλου, κατάγματα οστών των άκρων, τραύματα θώρακα και κοιλιάς, ανοικτά τραύματα και διατιτραίνουσες βλάβες) είναι αναγκαία ώστε να παρασχεθούν η κατάλληλη υγειονομική περίθαλψη και πρόγραμμα αποκατάστασης. Η αξιολόγηση θα πρέπει να γίνεται άμεσα με την άφιξη στο νοσοκομείο και περιλαμβάνει: ιατρικό ιστορικό, σημεία και συμπτώματα, π.χ. αδυναμία, αισθητικό και κινητικό έλλειμμα, δυσλειτουργία εντέρου και κύστης, ανατομικές παραμορφώσεις, εντοπισμένη ευαισθησία; νευρολογική (αισθητική και κινητική) εξέταση, απεικονιστικός έλεγχος, π.χ. ακτινογραφίες, υπολογιστική τομογραφία και /ή μαγνητική τομογραφία, και εργαστηριακός έλεγχος, π.χ. αιματολογικός, μικροβιολογικός. Συντηρητικές και/ ή χειρουργικές παρεμβάσεις απαιτούνται σε περίπτωση αστάθειας της σπονδυλικής στήλης ή σε περίπτωση εν εξελίξει πίεσης του νωτιαίου μυελού. Για τις τραυματικές και για τις ατραυματικές ΚΝΜ, υπάρχουν πλεονεκτήματα και επιπλοκές τόσο στη συντηρητική θεραπεία όσο και στη χειρουργική θεραπεία. Πολλοί παράγοντες θα πρέπει να ληφθούν υπόψη ώστε να προσδιοριστεί η καταλληλότερη θεραπευτική προσέγγιση, συμπεριλαμβανομένων: επιπέδου της βλάβης, είδος κατάγματος, βαθμός αστάθειας, παρουσία πίεσης νευρικών στοιχείων, επίδραση άλλων
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
κακώσεων, προγραμματισμός χειρουργείων, διαθεσιμότητα πόρων όπως εξειδίκευση, οφέλη και κίνδυνοι. Σε όλες τις περιπτώσεις θα πρέπει να δίνεται στο άτομο με ΚΝΜ εμπεριστατωμένη επιλογή μεταξύ συντηρητικής και χειρουργικής αντιμετώπισης. Η συντηρητική αντιμετώπιση περιλαμβάνει λήψη μέτρων για ακινητοποίηση της σπονδυλικής στήλης και "περιορισμό" μιας παρεκτόπισης, π.χ. με κατάκλιση, έλξη της σπονδυλικής στήλης ή εφαρμογή ορθώσεων (π.χ. ένας νάρθηκας halo), τα οποία διαρκούν για μια περίοδο πάνω από έξι εβδομάδες. Η χειρουργική αντιμετώπιση μπορεί να χρησιμοποιηθεί ώστε: (i) να αποσυμπιεστεί η σπονδυλική στήλη μέσω της "μείωσης" της μετατόπισης και/ή της απομάκρυνσης κατεαγόντων τμημάτων που προκαλούν συμπίεση νευρικών δομών και (ii) να σταθεροποιηθεί η σπονδυλική στήλη με την εμφύτευση υλικών και τη χρήση μοσχευμάτων. Πρόσφατα στοιχεία από μια προοπτική, πολυκεντρική μελέτη στη Β. Αμερική 313 ασθενών με βλάβες μεταξύ Α2 και Θ1 κατέδειξε ότι η έγκαιρη χειρουργική αποσυμπίεση , δηλ. το πρώτο 24ωρο μετά τη βλάβη, μπορεί να βελτιώσει τα νευρολογικά αποτελέσματα (56). Τόσο η συντηρητική όσο και η χειρουργική αντιμετώπιση έχουν δυνητικά πλεονεκτήματα και επιπλοκές, ενώ υπάρχει περιορισμένη έρευνα και συμφωνία απόψεων, ως προς το ποια προσέγγιση παρέχει καλύτερη νευρολογική ανάρρωση, έχει λιγότερες επιπλοκές, δίνει τη δυνατότητα για έγκαιρη κινητοποίηση και αποκατάσταση, και είναι πιο αποτελεσματική βάση κόστους (13, 51, 57-61). Η φροντίδα στην οξεία φάση ατραυματικής ΚΝΜ είναι παρόμοια αυτής για την τραυματική, με κάποιες παραλλαγές ανάλογα με την αιτία. Η επέμβαση μπορεί να επιλεχθεί για :εκφυλιστικές καταστάσεις, αν επηρεάζεται σημαντικά το σπονδυλικό κανάλι (62, 63)- όγκους σπονδυλικής στήλης , συχνά ακολουθούμενη από ακτινοθεραπεία και χημειοθεραπεία (64)- και παθήσεις των αγγείων της σπονδυλικής στήλης, με την εξαίρεση του ισχαιμικού επεισοδίου (65, 66). Ατραυματική ΚΝΜ που προκλήθηκε από επιμόλυνση μπορεί επίσης να απιτεί επέμβαση, αλλά τυπικά χρήζει άμεσης θεραπείας με αγωγή όπως αντιβιοτικά, αντιικά ή αντιπαρασιτικά φάρμακα (67).
Υγειονομική περίθαλψη και αποκατάσταση μετά την οξεία φάση Η κατάλληλη υγειονομική περίθαλψη και αποκατάσταση μπορούν να εμποδίσουν τις επιπλοκές που συνδυάζονται με την ΚΝΜ και μπορούν να βοηθήσουν τον ασθενή να έχει μια γεμάτη και παραγωγική ζωή εκπληρώνοντας ρόλους σε όσο το δυνατόν περισσότερους τομείς. Η αποκατάσταση, οριζόμενη ως "τα μέτρα που βοηθούν τους ασθενείς να πετύχουν και να κατακτήσουν την ιδανική λειτουργικότητα σε αλληλεπίδραση με το περιβάλλον" (44), θα πρέπει να ξεκινήσει στην οξεία φάση, των ατόμων με ΚΝΜ, να συνεχίσει να είναι διαθέσιμη ώστε να προωθήσει τη λειτουργικότητα και μάλιστα εντός ποικιλίας πλαισίων άλλων από αυτό του νοσοκομειακού έως αυτό του οικιακού και του ευρύτερου κοινωνικού περιβάλλοντος. Η επανάκτηση της λειτουργικότητας είναι μεγάλης προτεραιότητας για τα άτομα με ΚΝΜ. Οι μελέτες καταδεικνύουν πως η ανάκτηση της λειτουργικότητας του άνω άκρου είναι πολύ σημαντική για τα άτομα με τετραπληγία και η ανάκτηση της σεξουαλικής λειτουργίας είναι πολύ σημαντική για τα άτομα με παραπληγία, ενώ η ανάρρωση της ορθοκυστικής λειτουργίας είναι σημαντική και για τις δύο κατηγορίες ασθενών (68-71). Η ακόλουθη ενότητα εξερευνά τι συμβάλλει στην βελτίωση σωματικής και πνευματικής ικανότητας.
Διαχείριση λειτουργίας της κύστης Η απώλεια της κανονικής λειτουργίας της κύστης είναι από τις πιο σημαντικές συνέπειες για τα άτομα που έχουν υποστεί ΚΝΜ. Ελλιπής διαχείριση της λειτουργίας της κύστης μπορεί να οδηγήσει δευτερογενώς σε επιπλοκές όπως λοιμώξεις ουροποιητικού, κατακράτηση ούρων, ακράτεια, λιθίαση νεφρών και λοιπού ουροποιητικού και παλινδρόμηση ούρων (15). Όταν κάποιο από αυτά τα προβλήματα συμβαίνει για παρατεταμένη περίοδο, μπορούν να αναπτυχθούν καταστάσεις απειλητικές για τη ζωή, όπως η νεφρική ανεπάρκεια (13,16). Μέθοδοι που χρησιμοποιούνται ώστε να έχουν τη δυνατότητα τα άτομα με ΚΝΜ να αδειάσουν την κύστη τους περιλαμβάνουν (15, 16):
77
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
■ Διαλείπων καθετηριασμός – περιλαμβάνει την τοποθέτηση καθετήρα στην κύστη για την παροχέτευση των ούρων και την άμεση αφαίρεσή του μετά την ολοκλήρωσή της. Αυτό επαναλαμβάνεται σε τακτά χρονικά διαστήματα κατά τη διάρκεια της ημέρας και πραγματοποιείται είτε "με αποστειρωμένη μέθοδο" (δηλ. μιας χρήσης) είτε "με καθαρή μέθοδο"(δηλ. τήρηση κανόνων υγιεινής και αποθήκευση του καθετήρα για επαναχρησιμοποίησή του). ■ Μόνιμος καθετήρας – περιλαμβάνει την εισαγωγή καθετήρα στην κύστη και την παραμονή του εκεί για βραχύ ή μακρό χρονικό διάστημα. Οι δύο τύποι μόνιμου καθετήρα είναι 1) ο διουρηθρικός καθετήρας και 2) ο υπερηβικός καθετήρας , που σημαίνει την ένθεση του καθετήρα μέσω μιας μικρής τομής πάνω από το ηβικό οστό. ■ Άλλες μέθοδοι – περιλαμβάνουν χειρονακτικούς τρόπους για πυροδότηση της κένωσης ή τη χρήση περιπεϊκού καθετήρα, που είναι ένας εξωτερικά εφαρμοζόμενος καθετήρας τύπου προφυλακτικού ο οποίος συνδέεται με σακούλα παροχέτευσης (μόνο για άνδρες); φαρμακευτική αγωγή; ηλεκτρικός ερεθισμός; επέμβαση για την εκτροπή των ούρων σε κοιλιακή στομία για καθετηριασμό. Κάθε άτομο έχει ανάγκη ένα πρόγραμμα διαχείρισης προσαρμοσμένο έτσι που να λαμβάνει υπόψη παράγοντες όπως σεξ, λειτουργία κύστης, κινητικότητα, ισορροπία στην καθιστή θέση, λειτουργικότητα χεριών και τρόπος διαβίωσης. Θα πρέπει επίσης να λάβει κανείς υπόψη τα πλεονεκτήματα και τα μειονεκτήματα κάθε μεθόδου για τον έλεγχο της λειτουργίας της κύστης και την καταλληλότητα και διαθεσιμότητά τους στα πλαίσιο του ασθενούς. Οι ασθενείς αποθαρρύνονται από την υιοθέτηση των χειρονακτικών μεθόδων και η χρήση αποκλειστικά και μόνο αυτών μακροπρόθεσμα δε θεωρείται η καλύτερη πρακτική (16,72). Τα δεδομένα καταδεικνύουν ότι ο διαλείπων καθετηριασμός είναι η προτιμώμενη μέθοδος καθώς γενικά συνδυάζεται με λιγότερες επιπλοκές, ειδικά σε σύγκριση με τον μόνιμο καθετήρα (16). Μια τυχαιοποιημένη μελέτη που διεξήχθη στην Αμερική έδειξε ότι ένα σύντομο πρόγραμμα εκπαίδευσης (αποτελούμενο από έμπειρη νοσηλεύτρια η οποία παρακολουθεί τη διενέργεια του καθετηριασμού, συμβουλευτική από ιατρό για τρόπους βελτίωσης της διαχείρισης της κύστης και για το πότε 78
χρειάζεται πρόσβαση σε υγειονομική περίθαλψη, εφοδιασμός με γραπτές πληροφορίες για τη διαχείριση των λοιμώξεων του ουροποιητικού και τηλεφώνημα για παρακολούθηση προκειμένου να συζητηθούν ερωτήματα που προέκυψαν από την εκπαιδευτική συνεδρία) οδήγησε σε μείωση αναφοράς συμπτωμάτων, επεισοδίων θεραπείας με αντιβιοτικά και αριθμού λοιμώξεων ουροποιητικού (14). Η έρευνα επίσης έχει δείξει ότι ο διαλείπων καθετηριασμός με την καθαρή μέθοδο (CIC) μπορεί να είναι ασφαλής, αποτελεσματική και αποδοτική μέθοδος για να χρησιμοποιεί κανείς σε πλαίσιο με περιορισμένες παροχές (72-74).
Διαχείριση της λειτουργίας του εντέρου Το νευρογενές έντερο είναι μια συνήθης κατάσταση που ακολουθεί την ΚΝΜ και συσχετίζεται με μεγάλο αριθμό γαστρεντερικών προβλημάτων, όπως μειωμένη κινητικότητα του κόλου, παρατεταμένο χρόνο διέλευσης του περιεχομένου, χρόνια δυσκοιλιότητα, κοιλιακή διάταση και ακράτεια κοπράνων (75-77). Τα άτομα με ΚΝΜ και προβλήματα νευρογενούς λειτουργίας του εντέρου έχουν την αγωνία της πιθανής ακράτειας εντερικού περιεχομένου, η οποία μπορεί να έχει μεγάλη επιρροή στην δυνατότητά του να επιστρέψει σε προηγούμενους κοινωνικούς ρόλους και δραστηριότητες (75, 76). Η επαρκής διαχείριση της εντερικής λειτουργίας μπορεί να είναι ιδιαίτερα δύσκολη όταν οι παροχές είναι περιορισμένες. Για παράδειγμα, σύμφωνα με μελέτη που διεξήχθη στο Πακιστάν μετά το σεισμό του 2005, η περιορισμένη πρόσβαση σε κατάλληλη φροντίδα υγείας, σε ιατρικές συσκευές και σε χώρους υγιεινής (τουαλέτα) επηρέασε την ικανότητα των ατόμων να διατηρήσουν καλή εντερική φροντίδα (78). Παρόμοια με τη διαχείριση της κύστης, θα πρέπει να αναπτυχθεί ένα πρόγραμμα διαχείρισης του εντέρου ξεχωριστά για κάθε ασθενή. Ολοκληρωμένη αξιολόγηση, ανάπτυξη ειδικά προσαρμοσμένου – εξατομικευμένου προγράμματος, παρακολούθηση και εκπαίδευση είναι σημαντικές πτυχές της διαδικασίας (76). Ανάπτυξη αποτελεσματικού προγράμματος εντερικής λειτουργίας μπορεί να περιλαμβάνει μέτρα όπως; ■ εξασφάλιση επαρκούς και κατάλληλης πρόσληψης τροφής και υγρών; ■ χρήση διαιτητικών συμπληρωμάτων και φαρμάκων από το στόμα όταν είναι απαραίτητο; ■ επιλογή κατάλληλων μεθόδων για υποβοήθηση
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
αφόδευσης και κένωσης, όπως φυσικές τεχνικές (δηλ. χειρονακτική κένωση, δακτυλικός ερεθισμός του ορθού και του πρωκτικού καναλιού με κατάλληλη τοποθέτηση του σώματος) και ερεθιστικά της αφόδευσης όπως υπόθετα, υποκλυσμοί και καθαρτικά; ■ επέμβαση τοποθέτησης στομίας για επίτευξη κένωσης του εντέρου; ■ στρατηγικές διαχείρισης επιπλοκών (75, 77, 79-81).
Διαχείριση σεξουαλικής λειτουργίας και υγείας αναπαραγωγής Η ΚΝΜ και η έκπτωση σε λειτουργίες που σχετίζονται με αυτή μπορεί να επηρεάσουν τη φυσιολογική, πρακτική και ψυχολογική παράμετρο της σεξουαλικής λειτουργίας – διέγερση, απόκριση, σεξουαλική έκφραση και γονιμότητα. Τόσο οι άντρες όσο και οι γυναίκες μπορεί να έχουν μείωση ή απώλεια της αισθητικότητας, δυσκολία να πετύχουν οργασμό, να μετακινηθούν και να πάρουν συγκεκριμένη θέση και συνεπώς μειωμένη αυτοεκτίμηση και αυτοπεποίθηση (82-84). Επιπρόσθετα, οι άντρες μπορεί να αντιμετωπίσουν πλήρη ή μερική βλάβη της στυτικής τους ικανότητας και εκσπερμάτισης, με επιπτώσεις στη γονιμότητα (85). Για τις γυναίκες, ο καταμήνιος κύκλος μπορεί να διακοπεί μετά την κάκωση, ωστόσο επανέρχεται στο φυσιολογικό μετά από λίγους μήνες (86). Αλλαγές στη σεξουαλική λειτουργία μπορεί να φέρουν μεγάλες αλλαγές στην ποιότητα ζωής των ατόμων με ΚΝΜ (69, 82). Αυτές οι ψυχολογικές και κοινωνικές πτυχές της σεξουαλικότητας συζητούνται στο Κεφ.6. Συνοψίζοντας η επανέναρξη της σεξουαλικής δραστηριότητας, είναι μια σημαντική προτεραιότητα για τα άτομα με ΚΝΜ. Διεξήχθη μια έρευνα μέσω του διαδικτύου για τον προσδιορισμό της επίδρασης της ΚΝΜ στη σεξουαλικότητα και κατέδειξε ότι οι βασικοί λόγοι αναζήτησης σεξουαλικής δραστηριότητας ήταν η οικειότητα, η ίδια η σεξουαλική ανάγκη, η αυτοεκτίμηση και η διατήρηση συντρόφου (69). Η σεξουαλικότητα συνήθως παραβλέπεται στο πλαίσιο της αποκατάστασης καθώς οι επαγγελματίες υγείας ίσως δεν αισθάνονται άνετα να απευθύνουν ερωτήσεις για το θέμα αυτό και ίσως δεν έχουν την απαραίτητη γνώση και επιδεξιότητα για να το χειριστούν (82). Η διαχείριση της σεξουαλικής λειτουργίας απαιτεί
συζήτηση με σεβασμό την κατάλληλη στιγμή με τον ίδιο τον ασθενή αλλά και τον/την σύντροφό του/της. Τα μέτρα ιατρικής φροντίδας και αποκατάστασης χρειάζεται να είναι προσαρμοσμένα στον ασθενή και να λαμβάνουν υπόψη την ηλικία, το φύλο, παράγοντες σωματικούς, ψυχοκοινωνικούς και πολιτιστικούς (82, 83). Τα μέτρα αυτά περιλαμβάνουν: (i) την παροχή εκπαίδευσης και πληροφόρησης ως προς την προετοιμασία και τη θέση του σώματος για τη σεξουαλική δραστηριότητα, τον έλεγχο γεννήσεων, την πρόληψη για προστασία από τα σεξουαλικώς μεταδιδόμενα νοσήματα και τους τρόπους αντιμετώπισης επιπλοκών που μπορεί να προκύψουν όπως ακράτεια ή αυτόνομη δυσαντανακλαστικότητα; (ii) παροχή βοηθητικών συσκευών για την επίτευξη στύσης ή στάσης; θεραπεία στυτικής δυσλειτουργίας στους άντρες (π.χ. ερεθισμός με δόνηση, φαρμακευτική αγωγή, εγχύσεις ενδοπεϊκές, συσκευές κενού και, ως τελευταία επιλογή, λύσεις επεμβατικές όπως ενδοπεϊκά εμφυτεύματα); και (iii) υποβοηθούμενη γονιμοποίηση αν απαιτηθεί (13, 82, 83). Όταν γυναίκες με ΚΝΜ μένουν έγκυοι, χρειάζεται κανείς να σκεφτεί την πιθανή επίδραση που μπορεί να έχουν τα φάρμακα για τη νόσο στο έμβρυο, τον αυξημένο κίνδυνο για επιπλοκές (όπως ουρολοιμώξεις, έλκη πίεσης, εν τω βάθει φλεβοθρόμβωση, και αναπνευστικά προβλήματα) που συνδυάζονται με την εγκυμοσύνη, λειτουργικές αλλαγές λόγω της αύξησης του βάρους (π.χ. δυσκολία στις μεταφορές προς την ολοκλήρωση της εγκυμοσύνης)και επιπλοκές κατά τον τοκετό, όπως η αυτόνομη δυσαντανακλαστικότητα (86).
Διαχείριση δυσκολιών στη λειτουργικότητα Η ΚΝΜ αποτελεί αιτία περιορισμών σε πολλές δραστηριότητες. Η αποκατάσταση θα πρέπει να στοχεύει στο να βοηθήσει τα άτομα αυτά να ξεπεράσουν τους περιορισμούς: αποκτώντας καλύτερο έλεγχο του κορμού και των άκρων• τροποποιώντας το άμεσο περιβάλλον τους; και παρέχοντας βοηθητικές συσκευές και άλλες διευκολύνσεις ώστε να τους δοθεί η δυνατότητα εκπλήρωσης οικογενειακών και κοινωνικών ρόλων. Παρ’ότι υπάρχουν διαφορές μεταξύ των διαφόρων ασθενών, ο Πίνακας 4.1 παρέχει μια ευρεία περιγραφή των τελικών λειτουργικών επιπέδων (κινητικότητα, προσωπική υγιεινή και οικιακές δραστηριότητες) επιθυμητές για διάφορα επίπεδα πλήρους ΚΝΜ. 79
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Πίνακας 4.1.
Αναμενόμενο λειτουργικό αποτέλεσμα σε άτομα με πλήρη κινητική τετραπληγία και παραπληγία ένα έτος μετά την κάκωση Αναμενόμενο λειτουργικό αποτέλεσμα πλήρους τετραπληγίας
Λειτουργία Σίτιση Χτένισμα
Α1-4 Εξαρτώμενος Εξαρτώμενος
Α5 Ανεξάρτητος με βοηθήματα Απαιτείται βοήθεια ανεξάρτητος με βοηθήματα Απαιτείται βοήθεια Εξαρτώμενος
Α6 Ανεξάρτητος με ή χωρίς βοηθήματα Απαιτείται βοήθεια ανεξάρτητος με βοηθήματα Ανεξάρτητος Απαιτείται βοήθεια
Α7 Ανεξάρτητος Ανεξάρτητος με βοηθήματα Ανεξάρτητος Απαιτείται βοήθεια ανεξάρτητος με προσαρμοσμένο εξοπλισμό Απαιτείται βοήθεια ανεξάρτητος με βοηθήματα Απαιτείται βοήθεια ανεξάρτητος Ανεξάρτητος
Α8 –Θ1 Ανεξάρτητος Ανεξάρτητος
Ντύσιμο άνω άκρων Ντύσιμο κάτω ακρων Πλύσιμο
Εξαρτώμενος Εξαρτώμενος
Ανεξάρτητος Συνήθως ανεξάρτητος
Εξαρτώμενος Κινητικότητα επί κλίνης Αλλαγές φόρτισης
Εξαρτώμενος
Απαιτείται βοήθεια ανεξάρτητος με βοηθήματα Απαιτείται βοήθεια Ανεξάρτητος
Ανεξάρτητος με βοηθήματα Ανεξάρτητος Ανεξάρτητος
Εξαρτώμενος Ανεξάρτητος σε ηλεκτροκίνητο κάθισμα με μηχανισμό ανάκλισης Εξαρτώμενος
Απαιτείται βοήθεια Απαιτείται βοήθεια εκτός αν διαθέτει ηλεκτροκίνητο κάθισμα με μηχανισμό ανάκλισης Απαιτείται βοήθεια
Μεταφορές
Απαιτείται βοήθεια – ανεξάρτητος σε επίπεδες επιφάνειες Ανεξάρτητος με χειροκίνητο σε επίπεδες επιφάνειες
Προώθηση αμαξιδίου
Ανεξάρτητος με ή χωρίς σανίδα μεταφοράς για επίπεδες επιφάνειες Ανεξάρτητος με χειροκίνητο, εξαιρούμενων των ανώμαλων επιφανειών και των κράσπεδων Ανεξάρτητος με προσαρμογές
Ανεξάρτητος
Οδήγηση
Ανεξάρτητος με ηλεκτροκίνητο κάθισμα; εξαρτώμενος με χειροκίνητο Εξαρτώμενος
Ανεξάρτητος με ηλεκτροκίνητο κάθισμα; εξαρτώμενος ως ένα βαθμό με χειροκίνητο σε επίπεδες επιφάνειες Ανεξάρτητος με προσαρμογές
Ανεξάρτητος
Ανεξάρτητος με προσαρμογές
Ανεξάρτητος με προσαρμογές
Αναμενόμενο λειτουργικό αποτέλεσμα πλήρους παραπληγίας Θ2-9 Δραστηριότητες καθημερινότητας (περιποίηση, σίτιση, ένδυση, μπάνιο) Έντερο και κύστη Μεταφορές Ανεξάρτητος
Θ10-Ο2 Ανεξάρτητος
Ο3-Ι5 Ανεξάρτητος
Ανεξάρτητος Ανεξάρτητος
Ανεξάρτητος Ανεξάρτητος
Ανεξάρτητος Ανεξάρτητος συνεχίζεται....
80
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
συνέχεια....
Αναμενόμενο λειτουργικό αποτέλεσμα πλήρους παραπληγίας Θ2-9 Βάδιση Μόνο για εξάσκηση και με χρήση κηδεμόνων και πατερίτσες /περιπατητήρα τύπου «Π»
Θ10-Ο2 Μέσα στο σπίτι με κηδεμόνες; εκτός του σπιτιού με κηδεμόνες και πατερίτσες
Ο3-Ι5 Ανεξάρτητος, ωστόσο μπορεί να απαιτηθούν κηδεμόνες και πατερίτσες / βακτηρία
Ορολογία: Εξαρτώμενος - το άτομο με ΚΝΜ που χρήζει της παρουσίας άλλου ατόμου ώστε να φέρει σε πέρας την εργασία. Απαιτείται βοήθεια – το άτομο με ΚΝΜ μπορεί να φέρει σε πέρας την εργασία με βοήθεια από άλλο άτομο. Ο βαθμός βοήθειας μπορεί να είναι μικρός, μέτριος έως μεγάλος. Ανεξάρτητος – το άτομο με ΚΝΜ μπορεί να φέρει σε πέρας την εργασία με ή χωρίς βοηθήματα και χωρίς κάποιου είδους προσωπική βοήθεια. Πηγή: Προσαρμοσμένα από (87) με την άδεια των Wolters Kluwer και Lippincott Williams & Wilkins.
Πλειάδα μέτρων αποκατάστασης μπορούν να χρησιμοποιηθούν για την ενίσχυση μιας λειτουργίας ή την υποκατάσταση μιας απολεσθείσας λειτουργίας• κάποια από αυτά περιγράφονται στην ενότητα που ακολουθεί. Άσκηση για βελτίωση, αποκατάσταση ή συντήρηση λειτουργίας: η άσκηση είναι το μέτρο – κλειδί για την ενδυνάμωση και λειτουργικότητα του άνω άκρου και μπορεί να περιλαμβάνει επαναλαμβανόμενες κινήσεις (highly repetitive movement) και ηλεκτρικό ερεθισμό (19, 88-90). Παρεμβάσεις που αφορούν στο κάτω άκρο περιλαμβάνουν: παθητικές και ενεργητικές ασκήσεις για διάταση μαλακών στοιχείων, διατήρηση εύρους κίνησης και ενδυνάμωση• ηλεκτρικός ερεθισμός των μυών; και ποικίλες στρατηγικές επανεκπαίδευσης βάδισης σε συνδυασμό με τη χρήση βοηθημάτων όπως ορθώσεις, πατερίτσες, περιπατητήρες τύπου "Π" και δίζυγο (13, 19, 91, 92). Η άσκηση είναι σημαντική για τα άτομα με ΚΝΜ καθώς συνδυάζεται με ψυχολογικά και σωματικά οφέλη, περιλαμβάνοντας βελτιωμένη μυϊκή δύναμη και αντοχή, ελαττωμένη σπαστικότητα, βελτιωμένο εύρος κίνησης αρθρώσεων, ελάττωση πόνου, και βελτιωμένη καρδιαγγειακή κατάσταση (93-95). Διδαχή νέων στρατηγικών και τεχνικών: Η αποκατάσταση παρέχει στήριξη και καθοδήγηση στους ασθενείς ώστε να μάθουν και να κατέχουν νέους και εναλλακτικούς τρόπους για την επιτέλεση δραστηριοτήτων. Μεγάλη ποικιλία τεχνικών και στρατηγικών μπορούν να χρησιμοποιηθούν από άτομα με ΚΝΜ ώστε να ξεπεράσουν τους περιορισμούς τους: νέες τεχνικές ένδυσης που χρησιμοποιούν την υπολειπόμενη
μυϊκή λειτουργία, η χρήση ρούχων που επιτρέπουν μεγαλύτερη ευκολία στην ένδυση, η σίτιση με διαφορετικά σκεύη για ενεργοποίηση ανεξαρτητοποίησης, τροποποίηση συνηθειών καθημερινότητας, π.χ. τις συνήθειες προσωπικής φροντίδας, ώστε να μεγιστοποιηθεί η απόδοση και να συντηρηθεί ενέργεια και η ανάθεση εργασιών σε άλλους όπου αυτό είναι δυνατό. Η πετυχημένη αποκατάσταση εξασφαλίζει ότι οι ασθενείς έχουν τη δυνατότητα να εφαρμόσουν αυτά που έμαθαν σε διαφορετικά περιβάλλοντα. Έτσι ευκαιρίες για να εφαρμόσουν τις νέες στρατηγικές και τεχνικές εκτός του θεραπευτικού πλαισίου, π.χ. στο σπίτι και στην κοινότητα είναι απαραίτητες. Παροχή βοηθημάτων (συμπεριλαμβανομένων και των τροποποιήσεων του άμεσου περιβάλλοντος του ασθενούς): η βοηθητική τεχνολογία είναι σημαντικό στοιχείο της αποκατάστασης και απαραίτητη για τα άτομα με ΚΝΜ, καθώς τους καθιστά ικανούς να φέρουν σε πέρας διάφορες δραστηριότητες της καθημερινής ζωής, όπως η σίτιση, η ένδυση και η μετακίνηση με μεγαλύτερο βαθμό ανεξαρτησίας από αυτόν που θα είχαν χωρίς βοηθήματα. Τροποποιήσεις του περιβάλλοντος θα πρέπει με παρόμοιο τρόπο να απομακρύνουν εμπόδια στη λειτουργικότητα του ασθενή και θα πρέπει να προγραμματίζονται πριν από το οριστικό εξιτήριο του ασθενούς, όπως περιγράφεται παρακάτω στο Κεφάλαιο 7. Τόσο οι ίδιοι οι χρήστες των βοηθημάτων όσο και οι φροντιστές πρέπει να εκπαιδευτούν στη σωστή χρήση και φροντίδα τους, για παράδειγμα, οι χρήστες αμαξιδίου οι οποίοι έλαβαν την κατάλληλη εκπαίδευση έχει παρατηρηθεί ότι αναφέρουν περισσότερη ικανοποίηση και καλύτερα λειτουργικά επί81
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
πεδα (96). Η παροχή κατάλληλων βοηθημάτων ενδυναμώνει τα άτομα με ΚΝΜ και μπορεί να οδηγήσει σε επίτευξη ανεξαρτητοποίησης και συμμετοχής σε όλα τις εκφάνσεις της ζωής, π.χ. μόρφωση, εργασία, αναψυχή. Θεώρηση χειρουργικών παρεμβάσεων: Όταν δεν αναμένεται περαιτέρω νευρολογική ή λειτουργική βελτίωση στο άνω άκρο, η ανακατασκευή μπορεί να αποτελεί ένα ενδεχόμενο, παρότι δεν αρμόζει σε όλους τους ασθενείς με ΚΝΜ και για πολλούς δεν είναι διαθέσιμη (97). Η επέμβαση μπορεί να αφορά στη μεταφορά ενός ή περισσότερων μυών ή τενόντων για να βελτιωθεί η έκταση του αγκώνα ή του καρπού, ο δραγμός ή η γροθιά (13). Την επέμβαση ακολουθεί μια περίοδος ακινητοποίησης και στοχευμένων ασκήσεων. Για πολλά άτομα με ΚΝΜ ΑΜΣΣ, η επέμβαση οδήγησε σε καλύτερη κινητικότητα και λειτουργία του άνω άκρου, ωστόσο, εξατομικευμένες ιδιαιτερότητες πρέπει να ληφθούν υπόψη, όπως επίσης και τα πλεονεκτήματα και μειονεκτήματα της επέμβασης και η διαθεσιμότητα της αρμόζουσας αποκατάστασης (89, 98, 99).
Διαχείριση προβλημάτων ψυχικής υγείας Κατά την χρονική περίοδο μετά την κάκωση, οι ασθενείς και τα μέλη της οικογένειάς τους συχνά βιώνουν πένθος και μια ποικιλία συναισθημάτων όπως άρνηση, φόβος, απογοήτευση ή θυμό κατά την έναρξη της διαδικασίας προσαρμογής, όπως αυτό αναλύεται περισσότερο στο Κεφ.6. Προσωπικές παράμετροι – συμπεριλαμβανομένου του φύλου, της ηλικίας, της προσωπικότητας, του τρόπου διαχείρισης καταστάσεων – και η κατάσταση της πνευματικής υγείας προ της νόσου (π.χ. κατάθλιψη, αγωνία, εξάρτηση από αλκοόλ ή ναρκωτικές ουσίες) και οι σχετιζόμενες με την κάκωση καταστάσεις όπως αγχώδης μετατραυματική διαταραχή θα επηρεάσουν την προσαρμογή του ασθενούς στη βλάβη. Περιβαλλοντικοί παράγοντες -συμπεριλαμβανομένων των προσωπικών αξιών και των πολιτισμικών ιδεών συμπεριφοράς, κοινωνικής υποστήριξης, παροχής κατάλληλης βοηθητικής τεχνολογίας, και κοινωνικο-οικονομικής θέσης – επίσης επηρεάζουν την προσαρμογή (13, 48, 100-104). Η κατάθλιψη είναι μια κοινή κατάσταση ψυχικής υγείας στην οποία είναι ευάλωτοι οι ασθενείς με ΚΝΜ στο στάδιο μετά την κάκωση. Μια πρόσφατη ανασκόπηση εκτίμησε ότι το 20-30% των ατόμων με ΚΝΜ 82
έχουν κλινικά σημαντικά συμπτώματα κατάθλιψης (105). Η κατάθλιψη μπορεί να έχει εκτεταμένες συνέπειες τόσο για τους ασθενείς όσο και για τα μέλη των οικογενειών τους, αλλά και για το σύστημα υγείας. Η κατάθλιψη σχετίζεται με μικρότερη βελτίωση στη λειτουργικότητα, αυξημένη πιθανότητα εμφάνισης επιπλοκών όπως έλκη πίεσης και ουρολοιμώξεις, μεγάλη συχνότητα αυτοκτονικών επεισοδίων και επανεισαγωγής σε νοσοκομείο και αυξημένο ιατρικό κόστος για το σύστημα υγείας (101, 104, 106). Προβλήματα ψυχικής υγείας όπως η κατάθλιψη θεωρούνται συχνά ως φυσική συνέπεια της ΚΝΜ και γι’αυτό αντιμετωπίζονται ανεπαρκώς (101). Η διαχείριση της διαδικασίας προσαρμογής απαιτεί έγκαιρο έλεγχο και αξιολόγηση, παροχή τρόπων διαχείρισης τη σωστή στιγμή όπως η εκπαίδευση, πληροφορίες που αφορούν σε διαθέσιμες υπηρεσίες και πηγές υποστήριξης, συμβουλευτική και πιθανόν φαρμακευτική αγωγή και σταθερή παρακολούθηση μακροπρόθεσμα (13, 48, 104, 106, 107). Καθοδήγηση και υποστήριξη με στενή παρακολούθηση και από εξειδικευμένο προσωπικό είναι σημαντικό στοιχείο των προγραμμάτων αποκατάστασης για τα άτομα με ΚΝΜ και υπάρχουν στοιχεία που καταδεικνύουν ότι συμβάλλει σε καλύτερη προσαρμογή και λειτουργικότητα (108-111).
Βοηθητική τεχνολογία Ο όρος «βοηθητική τεχνολογία» και άλλοι σχετικοί όροι προσδιορίζονται στον Πίνακα 4.1.
Ανάγκη για βοηθητική τεχνολογία Η ανάγκη για βοηθητική τεχνολογία συνήθως ξεκινά με την εμφάνιση της ΚΝΜ και συνεχίζει καθ’όλη τη διάρκεια της ζωής του ατόμου. Το είδος βοηθημάτων που απαιτούνται επηρεάζεται από το επίπεδο της ΚΝΜ και τις αντίστοιχες ανικανότητες, από περιβαλλοντικούς παράγοντες (π.χ. το φυσικό περιβάλλον, την υποστήριξη, τις σχέσεις) και από προσωπικούς παράγοντες (π.χ. την ηλικία, την φυσική κατάσταση, τον τρόπο ζωής) και συνοσηρές καταστάσεις. Αμαξίδια, συστήματα ελέγχου του περιβάλλοντος και η τεχνολογία των ηλεκτρονικών υπολογιστών φαίνεται πως είναι τα πιο ευρέως χρησιμοποιούμενα βοηθήματα (112). Τα αμαξίδια είναι από τα πιο σημαντικά είδη συσκευών μετακίνησης που χρησιμοποιούνται από
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
τα άτομα με ΚΝΜ (113,114). Για παράδειγμα μελέτη στη Δανία κατέδειξε ότι μόλις το 3,4% δείγματος 236 ατόμων που παρακολουθήθηκαν για 10-45 έτη μετά την ΚΝΜ ανέφεραν ότι δε χρειάζονταν μηχάνημα μετακίνησης, ενώ το 83,5% χρησιμοποιούσαν χειροκίνητο και το 27% χρησιμοποιούσαν ηλεκτροκίνητο αμαξίδιο (115). Παρόμοια, σε μελέτη στην Αυστραλία πολλοί ασθενείς με ΚΝΜ ανέφεραν ότι η μετακίνηση ήταν ένα σημαντικό έως πολύ σημαντικό πεδίο ανάγκης για παρέμβαση (116). Μελέτη στις ΗΠΑ έδειξε ότι μηχανήματα για μετακίνηση και ανεξάρτητη διαβίωση ήταν τα πιο δημοφιλή για τους συμμετέχοντες στη μελέτη, με ένα μικρότερο ποσοστό να χρησιμοποιεί τους ηλεκτρονικούς υπολογιστές, τις προσθέσεις, τις ορθώσεις και συσκευές ενίσχυσης ή υποκατάστασης της επικοινωνίας (117). Άτομα με υψηλό επίπεδο βλάβης, δηλ. τετραπληγία, έχουν στην κατοχή τους πολλά περισσότερα βοηθήματα από τα άτομα με παραπληγία (117). Οι ανάγκες για βοηθήματα μπορεί να αλλάζουν κατά τη ματάβαση από τη μία φάση στην άλλη, όπως Πίνακας 4.2.
όταν ο ασθενής επιστρέψει στη διαβίωση στην κοινότητα, στην εργασία, ξεκινάει σχολείο, δοκιμάσει αλλαγή στις συνθήκες διαβίωσης ή στην κατάσταση της υγείας του, ή όταν έχει κέρδος ή απώλεια της λειτουργικότητάς του (118). Καθώς τα άτομα με ΚΝΜ μεγαλώνουν έχουν έκπτωση στη λειτουργική ανεξαρτησία τους, γεγονός το οποίο μπορεί να επιβάλλει την ανάγκη αλλαγής στα βοηθήματα που χρησιμοποιεί, π.χ. μπορεί να χρειαστούν ένα ηλεκτροκίνητο αμαξίδιο αντί για το χειροκίνητο(119).
Είδη βοηθητικής τεχνολογίας Ο Πίνακας 4.2 παρέχει μια επισκόπηση των βοηθημάτων των σχετικών με τα άτομα με ΚΝΜ. Τα βοηθήματα χωρίζονται σε κατηγορίες σύμφωνα με τις λειτουργικές ανάγκες και επομένως περιλαμβάνουν μηχανήματα μετακίνησης, συσκευές επικοινωνίας, βοηθήματα για την προσωπική φροντίδα, βοηθήματα για οικιακές δραστηριότητες και συστήματα ελέγχου του περιβάλλοντος.
Είδη βοηθητικής τεχνολογίας για άτομα με κάκωση νωτιαίου μυελού Παραδείγματα Σκοπός/Πλεονέκτημα Χρησιμοποιούνται στην οξεία φάση μετά την κάκωση για την ακινητοποίηση της σπονδυλικής στήλης και την επούλωση οστών και μαλακών ιστών, την παρεμπόδιση νέας βλάβης και τον περιορισμό του πόνου (120). Στη φάση ανάρρωσης είναι σχεδιασμένες να εμποδίζουν παραμορφώσεις, να βελτιώνουν την στάση και να περιορίζουν την κίνηση. Μπορούν να παρέχουν ακινητοποίηση του άκρου σε συγκεκριμένη θέση για να ελέγχεται η σπαστικότητα και να παρεμποδίζονται οι παραμορφώσεις. Επίσης, αντισταθμίζουν την μυϊκή αδυναμία ή την αστάθεια των αρθρώσεων και προσφέρουν στήριξη στα άτομα με επαρκή δύναμη στο κάτω άκρο για βάδιση (121). Προσφέρουν επιπλέον σταθερότητα κατά τη βάδιση για αντιστάθμιση μυϊκής αδυναμίας, φτωχού συντονισμού και ελαττωμένης ισορροπίας. Τα αμαξίδια χρησιμοποιούνται όταν η δύναμη των κάτω άκρων είναι ανεπαρκής για την βάδιση και μπορούν να προσαρμοστούν ώστε να υποστηρίζουν ευρεία γκάμα δυνατοτήτων μετακίνησης (122). Για παράδειγμα, τα χειροκίνητα αμαξίδια μπορούν να ελέγχονται χρησιμοποιώντας τα άνω άκρα ενώ τα συνεχίζεται....
Είδος δραστηριότητας Μετακίνηση Περιλαμβάνονται όλες οι δραστηριότητες που σχετίζονται με μετακίνηση και ταξίδι, όπως η αλλαγή και διατήρηση της θέσης του σώματος, η μεταφορά, βάδιση και μετακίνηση, μεταφορά και διαχείριση αντικειμένων, με τη χρήση πήχη και χεριού και χρησιμοποίηση μέσων μεταφοράς.
Ορθώσεις σπονδυλικής στήλης: ο τύπος της απαιτούμενης όρθωσης εξαρτάται από το επίπεδο και τη βαρύτητα της ΚΝΜ και περιλαμβάνει αυχενικό κολάρο, στερνο-αυχενο- γναθική ακινητοποίηση και θωρακο-οσφυικο- ιερές ορθώσεις.
Ορθώσεις κάτω άκρου: περιλαμβάνονται κηδεμόνες/νάρθηκες για την υποστήριξη του ισχίου, γόνατος, ποδοκνημικής και ποδιού. Το συνηθέστερο παράδειγμα είναι ο κνημοποδικός (ΚΠΔ).
Άλλα βοηθήματα βάδισης: περιλαμβάνονται βακτηρίες, πατερίτσες και περιπατητήρες τύπου «Π». Αμαξίδια: περιλαμβάνονται χειροκίνητα (προωθούμενα από τον ίδιο ή τον συνοδό, με τρεις ή τέσσερις ρόδες) και ηλεκτροκίνητα αμαξίδια (ελεγχόμενα με το κεφάλι, το πηγούνι, το χέρι), χειροκίνητα τρίκυκλα, και σκούτερ.
83
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού συνέχεια....
Είδος δραστηριότητας
Παραδείγματα
Σκοπός/Πλεονέκτημα ηλεκτροκίνητα χρησιμοποιώντας μικρές κινήσεις των δακτύλων πάνω σε χειριστήριο ή ακόμα χρησιμοποιώντας το κεφάλι (123) για τους ασθενείς με ανεπαρκή κίνηση του χεριού.
Βοηθήματα μεταφοράς: σεντόνια ολίσθησης, σανίδες μεταφοράς και γερανοί ανύψωσης.
Τα βοηθήματα μεταφοράς δίνουν τη δυνατότητα στους φροντιστές να βοηθήσουν τα άτομα με ΚΝΜ να αλλάξουν τη θέση του σώματος και να μεταφέρουν το σώμα τους από ένα μέρος σε ένα άλλο, ελαχιστοποιώντας την πιθανότητα βλάβης και για τους δύο. Σκοπός είναι η επίτευξη ιδανικής λειτουργικότητας στις καθημερινές δραστηριότητες, η παρεμπόδιση συγκάμψεων και παραμορφώσεων διατηρώντας κινητικότητα στις αρθρώσεις και φυσιολογικό μήκος στους μύες, καθώς και η παρεμπόδιση βλαβών του δέρματος και ελκών πίεσης (46,48,124). Στατικοί (ακίνητοι) νάρθηκες παρέχουν τοποθέτηση του χεριού τέτοια ώστε να αποφεύγονται οι συγκάμψεις και οι παραμορφώσεις. Δυναμικοί (κινητοί) νάρθηκες υποστηρίζουν αδύναμους ή παράλυτους μύες ευοδώνοντας έτσι την λειτουργία του άνω άκρου και του χεριού. Για παράδειγμα, όρθωση πηχεοκαρπικής ελεγχόμενη από τον καρπό ευοδώνει τη συλληπτική ικανότητα σε άτομα με αδύναμα δάκτυλα. Βελτιώνει τη λειτουργία του χεριού ιδιαίτερα σε άτομα με Α5, Α6, Α7 βλάβες (125). Φορητό σύστημα στήριξης βραχίονα μπορεί να προσαρμοστεί στο τραπέζι ή στο αμαξίδιο για να υποστηρίζεται ο βραχίονας ενάντια στη βαρύτητα επιτρέποντας να τον μετακινεί σε οριζόντιο επίπεδο. Τους επιτρέπεται έτσι να εκτελούν δραστηριότητες όπως σίτιση, υγιεινή, γραφή (126). Άτομα με ΚΝΜ συχνά χαρακτηρίζουν την μετακίνηση ως μέγιστο εμπόδιο. Η οδήγηση ενός προσαρμοσμένου οχήματος διευκολύνει την κοινωνική επανένταξη, πρόσβαση σε εργασία, σε υπηρεσίας υγείας και μικρές κατακτήσεις που σχετίζονται με την υγεία και την ποιότητα ζωής (127).
Συστήματα για καθηστή θέση και συγκεκριμένη στάση: περιλαμβάνονται ειδικά προσαρμοσμένα καθίσματα, μαξιλάρια για ανακούφιση από την πίεση και άνεση, υποστήριξη κεφαλιού, θώρακα, λεκάνης, ισχίων και ποδιών, ορθοστάτες τραπέζια και ζώνες τοποθέτησης. Ορθώσεις άνω άκρων: νάρθηκες για την υποστήριξη του ώμου, του αγκώνα, του καρπού και/ή του χεριού. Παραδείγματα περιλαμβάνουν νάρθηκες ηρεμίας, νάρθηκες τενόδεσης (υποστηρίζουν τον καρπό και επιτρέπουν λειτουργικό δραγμό), μικροί νάρθηκες χεριών και λειτουργικοί νάρθηκες (για υποβοήθηση σίτισης, γραφής, πληκτρολόγησης)
Οδήγηση και μετακίνηση: συμπεριλαμβάνονται ημιφορτηγά με ράμπα ή συστήματα ανελκτήρα για την τοποθέτηση των αμαξιδίων, προσαρμοσμένα συστήματα ελέγχου για επιτάχυνση, πέδηση και στροφή με το χέρι, πρόσθετα αξεσουάρ όπως μοχλοί για το άνοιγμα της πόρτας, λαβές και στρεφόμενα καθίσματα για υποβοήθηση στις μεταφορές. Επικοινωνία Αυτός ο τομέας περιλαμβάνει όλες τις δραστηριότητες που σχετίζονται με την επικοινωνία, όπως η παραλαβή και σύνταξη μηνυμάτων και η συμμετοχή σε συζητήσεις(4). Η πρόσβαση Οι συσκευές για επικοινωνία συνήθως κατηγοριοποιούνται ως συσκευές «ενισχυτικής και εναλλακτικής» επικοινωνίας (ΕΕΕ) και περιλαμβάνουν πίνακες επικοινωνίας, ενισχυτές ομιλίας, βαλβίδες ομιλίας, συσκευές ηλεκτρονικής παραγωγής ομιλίας και προγράμματα ομιλίας μέσω ηλεκτρονικών υπολογιστών με τεχνολογία παρακολούθησης ματιών ή κεφαλής. Τεχνολογία υπολογιστών: παραδείγματα αποτελούν
ΚΝΜ σε υψηλό επίπεδο ΝΜ μπορεί να επηρεάσει τους αναπνευστικούς μύες και μπορεί να απαιτηθεί μηχανική αναπνοή μέσω τραχειοστομίας. Βαλβίδες ομιλίας μπορούν να βοηθήσουν τα άτομα με τραχειοστομίες ώστε να παράγουν ομιλία. Αν η ομιλία είναι αδύναμη και δε μπορεί να παραχθεί, ΕΕΕ μπορεί να καταστήσει ικανά τα άτομα να εκφραστούν. Η τεχνολογία των υπολογιστών επιτρέπει στα άτομα να έχουν πρόσβαση στην πληροφορία του διαδι-
84
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
Είδος δραστηριότητας σε όλα τα είδη της πληροφόρησης ανήκει επίσης στην επικοινωνία.
Παραδείγματα εναλλακτικές συσκευές όπως μοχλοί και οθόνες αφής, τα οποία δίνουν τη δυνατότητα ελέγχου του δείκτη στην οθόνη του υπολογιστή(128), ανεπτυγμένα και τροποποιημένα πληκτρολόγια, έλεγχος με ράβδους που συγκρατούνται με το στόμα, διακόπτες φωνητικής εισόδου(129), διακόπτες βλέμματος που χρησιμοποιούν τις κινήσεις των οφθαλμών για επιλογή στόχων σε πληκτρολόγιο στην οθόνη του υπολογιστή και τεχνολογία που ανταποκρίνεται στα α-κύματα εγκεφάλου για την πυροδότηση της επιλογής(130).
Σκοπός/Πλεονέκτημα κτύου, προσφέροντας εναλλακτικούς και επιπρόσθετους τρόπους επικοινωνίας, ώστε είναι δυνατή η συμμετοχή στην εκπαίδευση, την εργασία και την αναψυχή.
Ατομική φροντίδα Αυτός ο τομέας περιλαμβάνει την «περιποίηση του εαυτού» όπως το πλύσιμο, η φροντίδα συγκεκριμένων σημείων, η τουαλέτα, η ένδυση, η σίτιση.
Μπάνιο: καθίσματα για το μπάνιο, πάγκοι, σανίδες μεταφοράς, χειρολαβές, γάντια μπάνιου, σφουγγάρια και βούρτσες με μακριές λαβές. Καλλωπισμός και υγιεινή: βούρτσες, χτένες, οδοντόβουρτσες, ξυράφια, καθρέπτες με λαβές που επεκτείνονται και έχουν συγκεκριμένη γωνία. Τουαλέτα: πάπιες, καρέκλες με ενσωματωμένο κάθισμα τουαλέτας, προσαρμοσμένα καθίσματα τουαλέτας. Ένδυση: ράβδοι, άγκιστρα κουμπιών, ιμάντες για τράβηγμα φερμουάρ, κάλτσες με μακριές λαβές, βοηθήματα υπόδησης. Σίτιση: πιάτα και μπωλ με υπερυψωμένα χείλη, σκεύη με λαβές ειδικά κατασκευασμένες, με βάρος, με στροφή και γωνίωση, κούπες με καλαμάκια, καπάκια, τροποποιημένες λαβές ή δύο λαβές.
Οι συσκευές προσωπικής φροντίδας δίνουν τη δυνατότητα σε άτομα με περιορισμένη λειτουργικότητα (με δυσκολίες τόσο στο άνω όσο και στο κάτω τμήμα του σώματος) να φροντίζουν τον εαυτό τους με μικρή ή καθόλου βοήθεια. Αδύναμος δραγμός, φτωχός συντονισμός κινήσεων ή περιορισμένο εύρος κίνησης αντισταθμίζονται για να επιτρέψουν τον ασθενή να μετακινεί και να χρησιμοποιεί αντικείμενα. Κατάλληλοι χειρισμοί κατά την προσωπική φροντίδα είναι απαραίτητοι ειδικά κατά την επιστροφή του ατόμου σε κοινωνικούς ρόλους όπως το σχολείο και η εργασία. Βοηθήματα όπως καθρεφτάκια παίζουν σημαντικό ρόλο στον έγκαιρο εντοπισμό ελκών πίεσης.
Καθημερινότητα στο σπίτι Αυτός ο τομέας περιλαμβάνει δραστηριότητες σχετικά με την οικιακή καθημερινότητα και τις εργασίες που προκύπτουν σε αυτήν όπως η προετοιμασία των γευμάτων και οι οικιακές δουλειές.
Τα παραδείγματα είναι πολλά: αντιολισθητικά πατάκια για την σταθεροποίηση πιάτων και σανίδων, τροποποιημένες επιφάνειες κοπής για την ακινητοποίηση του φαγητού κατά τον τεμαχισμό, εργαλεία κουζίνας με κεκαμμένες και άνετες λαβές, ανοιχτήρια μπουκαλιών και βάζων, ανατρεπόμενες κατσαρόλες, στροφείς βρύσης και χειρολαβών. Όπου το φαγητό μαγειρεύεται σε φωτιά ή στο έδαφος, χαμηλά καροτσάκια για τη μεταφορά αντικειμένων από το ένα σημείο στο άλλο, τηγάνια και κατσαρόλες χωρίς άκρη και βοηθήματα για να σπρώχνουν ή να τραβούν ζεστά αντικείμενα μπορεί να είναι χρήσιμα. Παραδείγματα αποτελούν: τηλεκοντρόλ και ειδικές προσαρμογές σε διακόπτες ώστε να είναι προσβάσιμοι (π.χ. διακόπτες που ενεργοποιούνται με την θέση της κεφαλής, του πηγουνιού, των φρυδιών ή της αναπνοής).
Η τεχνολογία δίνει τη δυνατότητα σε άτομα με περιορισμένη λειτουργικότητα (με δυσκολίες τόσο στο άνω όσο και στο κάτω τμήμα του σώματος) να εκτελούν οικιακές εργασίες με μικρή ή καθόλου βοήθεια.
Άλλα Μονάδες ελέγχου περιβάλλοντος
Τα άτομα που ζουν με ΚΝΜ μπορεί να χάσουν τη δυνατότητα να ελέγχουν συσκευές στο άμεσο περιβάλλον τους όπως την τηλεόραση, τα φώτα και την πόρτα. Τα συστήματα ελέγχου του περιβάλλοντος τους δίνουν τη δυνατότητα να επανακτήσουν αυτόν τον έλεγχο (131).
85
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Αποτελέσματα από τη χρήση της βοηθητικής τεχνολογίας Η πρόσβαση σε μεγάλη ποικιλία συσκευών βοηθητικής τεχνολογίας μπορεί να βοηθήσει τα άτομα με ΚΝΜ να εκτελούν δραστηριότητες στην καθημερινότητά τους που δε θα μπορούσαν με άλλο τρόπο να εκτελέσουν (115, 117, 126, 132-135). Η βοηθητική τεχνολογία μπορεί να δώσει τη δυνατότητα σε άτομα με ΚΝΜ να επιτύχουν μεγαλύτερη ανεξαρτησία και αυτονομία στην καθημερινότητά τους, π.χ. τα αμαξίδια επιτρέπουν στους ασθενείς με ΚΝΜ να μετακινούνται μέσα στη κοινότητα (136). Τα συστήματα ελέγχου του περιβάλλοντος καθιστούν ικανά τα άτομα με ΚΝΜ να επανακτήσουν τον έλεγχο συσκευών στο άμεσο περιβάλλον τους, όπως η τηλεόραση, ο υπολογιστής, το τηλέφωνο, τα φώτα και οι πόρτες (131). Μελέτη που διεξήχθη στον Καναδά κατέδειξε ότι τα άτομα που χρησιμοποιούσαν συστήματα ελέγχου του περιβάλλοντος είχαν μεγαλύτερη λειτουργική ικανότητα για το 75% των εργασιών των σχετικών με την καθημερινή ζωή, το οποίο είχε θετική επιρροή στην ψυχοκοινωνική παράμετρο της ζωής τους (137). Η χρήση βοηθητικής τεχνολογίας έχει συσχετισθεί με μεγαλύτερη συμμετοχή στο κοινωνικό σύνολο, στην κοινωνική και δημόσια ζωή (138-140). Ειδικά στα παιδιά με ΚΝΜ μπορεί να διαδραματίσει ζωτικό ρόλο για την προώθηση της μόρφωσης και της ανάπτυξής τους (141) και την δυνατότητα για κινητικότητα, εκπαίδευση και κοινωνική συμμετοχή (142). Επίσης, η βοηθητική τεχνολογία συμβάλλει στην πρόσληψη σε εργασία (117) και βοηθάει στην εξασφάλιση της επανένταξης και συμπερίληψης των ατόμων με ΚΝΜ στο κοινωνικό σύνολο (122, 133). Η βοηθητική τεχνολογία μπορεί επιπλέον να βελτιώσει την ποιότητα ζωής. Για παράδειγμα, έρευνες έχουν δείξει ότι η χρήση συστημάτων ελέγχου περιβάλλοντος έχει θετική επιρροή στην αντίληψη του χρήστη για την ικανότητά του, την προσαρμοστικότητά του και την αυτοεκτίμησή του (137, 143) και μπορεί να οδηγήσει σε υψηλότερα επίπεδα ικανοποίησης σχετικά με την ποιότητα ζωής σε σχέση με όσους δεν την χρησιμοποιούν (144). Τα άτομα με ΚΝΜ που δε χρησιμοποιούν βοηθητική τεχνολογία μπορεί να αντιμετωπίσουν περιορισμούς στη λειτουργικότητά τους και μεγάλη εξάρτηση 86
από άλλους για βοήθεια (144). Έτσι μπορεί να περιορίσει το επίπεδο εξάρτησης από φροντιστές (145) και να ελαττώσει το χρόνο και τον σωματικό κόπο τους (132) όπως αυτό αναφέρθηκε από φροντιστές παιδιών με νευρομυικές παθήσεις στη Γουατεμάλα (139). Τα οικονομικά κέρδη από την βοηθητική τεχνολογία περιλαμβάνουν την ελάττωση του κόστους όταν πρόκειται για οικογενειακή βοήθεια, όπως απώλεια μισθών και του κόστους των επίσημων υπηρεσιών βοήθειας (44, 132, 146, 147).
Διατήρηση της υγείας Όπως επισημάνθηκε στο Κεφάλαιο 2, το προσδόκιμο ζωής των ατόμων με ΚΝΜ αυξάνεται σταθερά ως αποτέλεσμα της εξέλιξης στην ιατρική και της βελτιωμένης πρόσβασης στο σύστημα υγείας, αποκατάστασης και υποστηρικτικές δομές (148-150). Ενώ το προσδόκιμο ζωής πλησιάζει αυτό του γενικού πληθυσμού στις αναπτυγμένες χώρες, απέχει πολύ από αυτήν την εξίσωση στις αναπτυσσόμενες χώρες, όπου η νοσηρότητα και η θνητότητα θα παραμείνουν μάλλον σε υψηλά επίπεδα, εάν δεν αυξηθούν οι επενδύσεις. Είναι δεδομένο ότι ως σύνολο τα άτομα με αναπηρίες έχουν χειρότερο επίπεδο υγείας από τον γενικό πληθυσμό (44). Αυτό ισχύει επίσης και για τα άτομα με ΚΝΜ, τα οποία έρχονται συχνά αντιμέτωπα με «περιορισμένο» εύρος υγείας. Αυτό επηρεάζεται κυρίως από το είδος της ΚΝΜ, δηλ. τη σοβαρότητα και το επίπεδο της κάκωσης (150). Όπως προαναφέρθηκε, τα άτομα με ΚΝΜ διατρέχουν μεγάλο κίνδυνο δευτερογενών καταστάσεων νόσησης όπως πνευμονία, έλκη πίεσης και λοιμώξεις ουροποιητικού (49, 151). Αυτές οι καταστάσεις οδηγούν συχνά σε εισαγωγή στο νοσοκομείο και μπορεί δυνητικά να προκαλέσουν αυξημένο κόστος φροντίδας, μειωμένη πρόσληψη σε εργασία, χαμηλή ποιότητα ζωής και χαμηλό προσδόκιμο επιβίωσης (49, 152-155). Τα άτομα με ΚΝΜ διατρέχουν τον κίνδυνο νόσησης από χρόνια νοσήματα όπως και ο γενικός πληθυσμός, π.χ. καρδιολογική νόσος, εγκεφαλικό, διαβήτης. Ωστόσο, σύμφωνα με στοιχεία ο επιπολασμός των νοσημάτων αυτών είναι μεγαλύτερος για τα άτομα με ΚΝΜ ως προς τον γενικό πληθυσμό (156-160). Η ισχαιμική καρδιοπάθεια κατέχει την πρώτη θέση ως αιτία θανάτου για τα άτομα με ΚΝΜ στην Αυστραλία, σε σημαντικά μεγαλύτερη αναλογία σε σχέση με τον
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
γενικό πληθυσμό (157). Χρόνιες καταστάσεις σε άτομα με ΚΝΜ συνδυάζονται με αλλαγές στη σύνθεση του σώματος, όπως ελαττωμένη μυική μάζα, αυξημένο λιπώδη ιστό, χαμηλότερα επίπεδα δραστηριότητας ως αποτέλεσμα της παράλυσης, δυσλειτουργίας του αυτόνομου και μεταβολικών αλλαγών (152, 156, 158, 161). Μπορεί να υπάρχουν συνδυασμοί με άλλους παράγοντες κινδύνου, όπως φτωχή δίαιτα, χρήση τσιγάρου ή αλκοόλ τα οποία μπορεί να παρατηρούνται πιο έντονα στον πληθυσμό με ΚΝΜ (159, 162, 163). Η διατήρηση καλής κατάστασης υγείας των ατόμων με ΚΝΜ απαιτεί την κατανόηση των εξής: (1) διατρέχουν τον κίνδυνο σε ζητήματα υγείας που είναι συνυφασμένα με την ΚΝΜ και γι’αυτό απαιτείται η συνεχής πρόσβασή τους σε γενικές αλλά και εξειδικευμένες υπηρεσίες υγείας (151) και (2) διατρέχουν επίσης τον κίνδυνο ανάπτυξης προβλημάτων υγείας όπως ο γενικός πληθυσμός και επομένως απαιτείται
πρόσβαση σε κοινές υπηρεσίες όπως προαγωγή υγείας, πρόληψη (εμβολιασμός, έλεγχος υγείας) και θεραπεία οξέων και χρόνιων νοσημάτων (44). Η συμμετοχή σε φυσική δραστηριότητα έχει οφέλη για την υγεία και την καλή σωματική κατάσταση, αλλά η προσκόλληση σε τακτικό και επαναλαμβανόμενο πρόγραμμα άσκησης μπορεί να είναι δύσκολο να ακολουθηθεί (164) αν υπάρχουν περιβαλλοντικοί περιορισμοί, καθώς είναι στενά συνδεδεμένοι με ελαττωμένη φυσική δραστηριότητα (165). Ο πίνακας 4.3 παρέχει μερικά από τα εξειδικευμένα και κοινά μέτρα διαφύλαξης της υγείας που σχετίζονται με άτομα με ΚΝΜ. Θα πρέπει να επισημανθεί ότι ο πίνακας αυτός παρέχει μόνο μια αδρή περιγραφή και θα πρέπει να δοθεί προσοχή σε ειδικές κατευθυντήριες οδηγίες και δεδομένα για κάθε χώρα. Οι πάροχοι φροντίδας υγείας, τα άτομα με ΚΝΜ και τα μέλη των οικογενειών θα πρέπει όλοι να αναμειχθούν στην ανάπτυξη και εκτέλεση ενός πλάνου διαφύλαξης υγείας.
Πίνακας 4.3.
Παραδείγματα μέτρων διαφύλαξης υγείας Μέτρα διαφύλαξης Τακτικός επανέλεγχος προγραμμάτων διαχείρισης κύστης. Περαιτέρω έλεγχος σε περίπτωση αλλαγών λειτουργίας της κύστης (π.χ. κατακράτηση ούρων, επεισόδια ακράτειας, λοιμώξεις ουροποιητικού, αιματουρία). Έλεγχος νεφρικής λειτουργίας. Τακτική απεικόνιση του ουροποιητικού συστήματος. Έλεγχος προστατικής λειτουργίας για τους άνδρες. Τακτικός έλεγχος λειτουργίας του εντέρου. Περαιτέρω έλεγχος σε περίπτωση αλλαγών λειτουργίας του εντέρου (π.χ. δυσκοιλιότητα, διάρροια). Τακτική δακτυλική εξέταση από τη μέση ηλικία. Ενθάρρυνση για δίαιτα με μεγάλη περιεκτικότητα σε φυτικές ίνες και πρόσληψη υγρών (νερού) καθημερινά. Τακτικός έλεγχος εντερικής λειτουργίας, της συχνότητας, του χρώματος και της σύστασης των κοπράνων. Έλεγχος χοληστερόλης, λιπιδίων και αρτηριακής πίεσης τακτικά. Έλεγχος παραγόντων κινδύνου (π.χ.δίαιτα και κάπνισμα). Παροχή ενημέρωσης και υποστήριξης για περιορισμό παραγόντων κινδύνου. Ενθάρρυνση για τακτική αεροβική άσκηση κάθε εβδομάδα. Έλεγχος και παρακολούθηση ψυχοκοινωνικής λειτουργικότητας (π.χ. κατάθλιψη). Έλεγχος δυνατότητας φροντιστών για παροχή και διατήρηση υποστήριξης. Ενημέρωση και υποστήριξη για κατάλληλη δίαιτα και άσκηση. Ενθάρρυνση για συμμετοχή στο κοινωνικό πλαίσιο. Επανέλεγχος νευρομυοσκελετικής λειτουργίας, ειδικά αν υπάρχουν αλλαγές στην αισθητικότητα, σε μυική ισχύ/τόνο, εύρος κίνησης άρθρωσης ή αυξανόμενος πόνος. συνεχίζεται....
Οργανικό σύστημα Ουροποιογεννητικό
Έντερο
Καρδιαγγειακό
Πνευματική υγεία και ευημερία
87
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
συνέχεια....
Οργανικό σύστημα Νευρικό/ Μυοσκελετικό Αναπνευστικό
Μέτρα διαφύλαξης Ενημέρωση και εκπαίδευση ώστε να αποφεύγονται βλάβες από υπέρχρηση, ειδικά των άνω άκρων. Ενθάρρυνση για τακτική άσκηση κάθε εβδομάδα. Επανέλεγχος βοηθημάτων για εξασφάλιση καλής εφαρμογής και λειτουργίας. Ενημέρωση για στρατηγικές πρόληψης και αντιμετώπισης λοιμώξεων. Εκπόνηση τακτικών ελέγχων αναπνευστικού (π.χ. ζωτική χωρητικότητα, μέγιστη εκπνευστική ροή). Ανοσοποίηση ενάντια σε γρίππη και πνευμονιοκοκκική πνευμονία. Παροχή υποστήριξης και ενθάρρυνσης για διακοπή καπνίσματος. Διενέργεια τεστ ΠΑΠ και γυναικολογικής εξέτασης για τις γυναίκες. Διενέργεια μαστογραφίας στις γυναίκες.
Σεξουαλική και αναπαραγωγική λειτουργία Δέρμα
Ενημέρωση για τον τρόπο καθημερινού ελέγχου του δέρματος. Συμβουλευτική για τη σωστή διατροφή. Ενημέρωση για την αλλαγή θέσης κάθε δύο ώρες. Επανέλεγχος βοηθημάτων τακτικά για εξασφάλιση σωστής εφαρμογής και λειτουργίας (π.χ. συστήματα αμαξίδιου και καθίσματος).
Πηγές (47,76,95,152,156,157,159,164)
Συμπεράσματα και συστάσεις Η έγκαιρη παροχή κατάλληλης ιατρικής φροντίδας και αποκατάστασης (συμπεριλαμβανομένων και των βοηθημάτων) μπορεί να έχει σημαντική επίδραση στη θνητότητα, νοσηρότητα και αναπηρία των ατόμων με ΚΝΜ. Πρόσβαση σε εξειδικευμένη και ευρύτερη φροντίδα υγείας μπορεί να οδηγήσει σε καλύτερα αποτελέσματα αποκατάστασης και σε παραγωγική και απολαυστική διαβίωση για τα άτομα με ΚΝΜ. Θα πρέπει να επισημανθεί ότι αυτό το κεφάλαιο έχει σκοπό να παρέχει πληροφορίες για τις ανάγκες των ατόμων με ΚΝΜ κατά μια ευρεία έννοια. Σε περίπτωση που χρειαστεί πιο ολοκληρωμένη κλινική καθοδήγηση, θα πρέπει να αναζητηθεί σε περιοδικά με αξιολογημένες έρευνες, ιατρικά βιβλία αποκατάστασης και γενικού περιεχομένου, εγχειρίδια και κατευθυντήριες οδηγίες, σχετικούς με το αντικείμενο υπαλλήλους υγείας και επαγγελματικούς οργανισμούς και προσαρμοσμένα για χρήση στην συγκεκριμένη χώρα και στο συγκεκριμένο πλαίσιο. Το Κεφάλαιο 5 ερευνά τι μπορούν να κάνουν οι χώρες για να βελτιώσουν την ικανότητα των συστημάτων υγείας τους ώστε να καλύψουν τις ανάγκες των ατόμων με ΚΝΜ. Οι αδυναμίες πολιτικής και πρακτι88
κής όσον αφορά στην ανάλυση των αναγκών σε θέματα υγείας για τα άτομα με ΚΝΜ που παρουσιάστηκαν στο Κεφάλαιο 4 αναδεικνύουν ότι πρέπει να αντιμετωπιστούν τα παρακάτω θέματα: ■ Πρέπει να υπάρχει ταχεία πρόσβαση σε υπηρεσίες φροντίδας υγείας αμέσως μετά την κάκωση ώστε να αντιμετωπιστούν πολύπλοκα προβλήματα που σχετίζονται με την ΚΝΜ και να διασωθεί κατά το δυνατόν η νευρολογική λειτουργία. ■ Η πρόσβαση σε αποκατάσταση θα πρέπει να ακολουθεί το συντομότερο δυνατόν, δηλ. κατά την οξεία φάση της κάκωσης, και να συνεχίζει να παρέχεται ώστε να μεγιστοποιείται το λειτουργικό αποτέλεσμα και να διευκολύνεται η μετάβαση στη ζωή στην κοινότητα. ■ Πρόσβαση σε μεγάλη ποικιλία τεχνολογικών βοηθημάτων θα στηρίξει την προσαρμογή στις αλλαγές λειτουργικότητας και θα μεγιστοποιήσει την δυνατότητα για ανεξάρτητη διαβίωση. ■ Θα πρέπει να ακολουθεί επανέλεγχος του ασθενούς ώστε να αντιμετωπίζονται προβλήματα που μπορεί να παρουσιαστούν μετά το εξιτήριο από τις μονάδες αποκατάστασης, ιδιαίτερα τους πρώτους 12 μήνες μετά την κάκωση. ■ Θα πρέπει να αναγνωριστεί ότι τα άτομα με ΚΝΜ διατρέχουν υψηλό κίνδυνο επιπλοκών όπως πνευ-
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
μονία, λοιμώξεις ουροποιητικού, έλκη πίεσης και γι’ αυτό απαιτείται η δυνατότητα πρόσβασης τόσο σε γενικές υπηρεσίες υγείας όσο και σε πιο εξειδικευμένες. ■ Τα άτομα με ΚΝΜ χρειάζεται να έχουν πρόσβαση σε γενικές υπηρεσίες υγείας για να αντιμετωπίζονται οξείες και χρόνιες ασθένειες όπως ο γενικός πληθυσμός. ■ Μια συντονισμένη, ολοκληρωμένη και διεπιστη-
μονική προσέγγιση περιλαμβάνει τόσο τους ίδιους τους ασθενείς όσο και τις οικογένειές τους και βοηθά σε μια ομαλή μετάβαση της φροντίδας από το ενδονοσοκομειακό, στο εξωνοσοκομειακό και τελικά στο κοινωνικό πλαίσιο. ■ Θα πρέπει να υπάρχει συνεχής κλινική έρευνα για να προσδιορίζεται η καλύτερη δυνατή τεχνική αποκατάστασης για την επαναφορά της λειτουργικότητας σε διαφορετικά πλαίσια.
Βιβλιογραφία 1. 2. 3. 4. 5. 6. 7. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/disabilities-convention.htm, accessed 9 May 2012). Kirshblum SC et.al. International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 2011, 34:535-546. doi: http://dx.doi.org/10.1179/204577211X13207446293695 PMID:22330108 Alexander MS et.al. International standards to document remaining autonomic function after spinal cord injury. Spinal Cord, 2009, 47:36-43. doi: http://dx.doi.org/10.1038/sc.2008.121 PMID:18957962 WHO. International classification of functioning, disability and health. Geneva, World Health Organization, 2001. Krassioukov A et.al. A systematic review of the management of orthostatic hypotension after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:876-885. doi: http://dx.doi.org/10.1016/j.apmr.2009.01.009 PMID:19406310 Consortium for Spinal Cord Medicine. Autonomic dysreflexia: what you should know. Washington, DC, Paralyzed Veterans of America, 1997. Krassioukov A et al. Autonomic dysreflexia following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–33 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). Teasell RW et al. Venous thromboembolism following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). Geerts WH et al. Prevention of venous thromboembolism: American College of Chest Physicians evidence-based clinical practice guidelines, 8th ed. Chest, 2008, 133(6):381S–453S. Illman A, Stiller K, Williams M. The prevalence of orthostatic hypotension during physiotherapy treatment in patients with an acute spinal cord injury. Spinal Cord, 2000, 38:741-747. doi: http://dx.doi.org/10.1038/sj.sc.3101089 PMID:11175374 Claydon VE, Krassioukov A. Orthostatic hypotension and autonomic pathways after spinal cord injury. Journal of Neurotrauma, 2006, 23:1713-1725. doi: http://dx.doi.org/10.1089/neu.2006.23.1713 PMID:17184183 Krassioukov A et al. Orthostatic hypotension following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–20. (http://www.scireproject. com/rehabilitationevidence, accessed 25 April 2012). Bryce T. Spinal Cord Injury. New York, Demos Medical, 2010. Cardenas DD et.al. Impact of urinary tract infection educational program in persons with spinal cord injury. The Journal of Spinal Cord Medicine, 2004, 27:47-54. PMID:15156937 Consortium for Spinal Cord Medicine. Bladder management for adults with spinal cord injury: a clinical practice guideline for healthcare providers. Washington, DC, Paralyzed Veterans of America, 2006. Wolfe DL et al. Bladder health and function following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012).
8.
9. 10. 11. 12.
13. 14. 15. 16.
89
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
17.
18.
19. 20. 21. 22. 23. 24.
25. 26.
27. 28. 29.
30. 31.
32. 33. 34. 35. 36. 37.
National Institute on Disability and Rehabilitation Research. The prevention and management of urinary tract infections among people with spinal cord injuries. National Institute on Disability and Rehabilitation Research Consensus Statement. January 27−29 1992. The Journal of the American Paraplegia Society, 1992, 15:194-204. PMID:1500945 Hsieh JTC et al. Spasticity following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitationevidence,accessed 25 April 2012). Harvey L. Management of spinal cord injury: a guide for physiotherapists. London, Elsevier, 2008. Katalinic OM et al. Stretch for the treatment and prevention of contractures [review]. Cochrane database of systematic reviews (Online), 2010, (9):CD007455. PMID:20824861 Ashe MC et al. Bone health following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence,Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–26. Craven BC et.al. Detection and treatment of sublesional osteoporosis among patients with chronic spinal cord injury: proposed paradigms. Topics in Spinal Cord Injury Rehabilitation, 2009, 14:1-22. doi: http://dx.doi.org/10.1310/sci1404-1 Eser P et.al. Bone loss and steady state after spinal cord injury: a cross-sectional study using pQCT. Journal of Musculoskeletal & Neuronal Interactions, 2004, 4:197-198. PMID:15615125 Frey-Rindova P et.al. Bone mineral density in upper and lower extremities during 12 months after spinal cord injury measured by peripheral quantitative computed tomography. Spinal Cord, 2000, 38:26-32. doi: http://dx.doi.org/10.1038/sj.sc.3100905 PMID:10762194 Biering-Sοrensen F et.al. Non-pharmacological treatment and prevention of bone loss after spinal cord injury: a systematic review. Spinal Cord, 2009, 47:508-518. doi: http://dx.doi.org/10.1038/sc.2008.177 PMID:19172152 Teasell RW et al. Heterotopic ossification following spinal cord injury. Syringomyelia following spinal cord injury. In: Eng JJ et al, eds. Spinal cord injury rehabilitation evidence, version 4. Vancouver, SCIRE, 2012. (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012) Winslow C, Rozovsky J. Effect of spinal cord injury on the respiratory system. American Journal of Physical Medicine & Rehabilitation, 2003, 82:803-814. doi: http://dx.doi.org/10.1097/01.PHM.0000078184.08835.01 PMID:14508412 Zimmer MB, Nantwi K, Goshgarian H. Effect of spinal cord injury on the respiratory sysem: basic research and current clinical treatment options. The Journal of Spinal Cord Medicine, 2007, 30:319-330. PMID:17853653 Sheel AW et al. Respiratory management. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence,Volume 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–46 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). Consortium for Spinal Cord Medicine. Respiratory management following spinal cord injury: a clinical practice guideline for healthcare professionals. Washington, DC, Paralyzed Veterans of America, 2005. Onders RP. Complete worldwide operative experience in laparoscopic diaphragm pacing: results and differences in spinal cord injured patients and amyotrophic lateral sclerosis patients. Surgical Endoscopy, 2009, 23:1433-1440. doi: http://dx.doi. org/10.1007/s00464-008-0223-3 PMID:19067067 Brown R et.al. Respiratory dysfunction and management in spinal cord injury. Respiratory Care, 2006, 51:853-868. PMID:16867197 Baastrup C, Finnerup N. Pharmacological management of neuropathic pain following spinal cord injury. CNS Drugs, 2008, 22:455475. doi: http://dx.doi.org/10.2165/00023210-200822060-00002 PMID:18484790 Cardenas DD, Jensen M. Treatments for chronic pain in persons with spinal cord injury: a survey study. The Journal of Spinal Cord Medicine, 2006, 29:109-117. PMID:16739554 Dijkers M et.al. Prevalence of chronic pain after traumatic spinal cord injury: a systematic review. Journal of Rehabilitation Research and Development, 2009, 46:13-29. doi: http://dx.doi.org/10.1682/JRRD.2008.04.0053 PMID:19533517 Bryce TN et.al. International spinal cord injury pain classification: Part I: background and description. [Epub ahead of print] Spinal Cord, 2012, PMID:22182852 Bryce TN et.al. International spinal cord injury pain (ISCIP) classification: Part 2: initial validation using vignettes. [Epub ahead of print]Spinal Cord, 2012, PMID:22310319
90
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
38. 39. 40. 41. 42. 43. 44. 45. 46. 47.
48. 49. 50. 51. 52. 53. 54. 55. 56. 57. 58. 59. 60. 61.
Finnerup NB, Baastrup C, Jensen TS. Neuropathic pain following spinal cord injury pain: mechanisms and treatment. Scandinavian Journal of Pain, 2009, 1 S1:S3-S11. doi: http://dx.doi.org/10.1016/S1877-8860(09)70003-5 Turner JA, Cardenas DD, Warms CA, McClellan CB. Chronic pain associated with spinal cord injuries: a community survey. Archives of Physical Medicine and Rehabilitation, 2001, 82:501-509. doi: http://dx.doi.org/10.1053/ apmr.2001.21855 PMID:11295011 Cardenas DD et.al. Gender and minority differences in the pain experience of people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1774-1781. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.027 PMID:15520972 Jensen MP et.al. The impact of neuropathic pain on health-related quality of life: review and implications. Neurology, 2007, 68:11781182. doi: http://dx.doi.org/10.1212/01.wnl.0000259085.61898.9e PMID:17420400 Sawatzky B et.al. Classification and measurement of pain in the spinal cord-injured population. Spinal Cord, 2008, 46:2-10. doi: http://dx.doi.org/10.1038/sj.sc.3102137 PMID:17968403 United States Congress. Assistive Technology Act. United States Congress 2004 (Public Law 108–364) (http://www.ataporg.org/summaryact.html, accessed 2 August 2011). WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf, accessed 10 May 2012). WHO. Consensus conference on wheelchairs for developing countries, Bengaluru, India, 6−11 November 2006 http://www. who.int/disabilities/technology/Wheelchair%20Consensus%20Conference%20Report_Jan08.pdf, accessed 29 May 2012). Consortium for Spinal Cord Medicine. Pressure ulcer prevention and treatment following spinal cord injury: a clinical practice guideline for health care professionals. Washington, DC, Paralyzed Veterans of America, 2000. Regan M et al. Pressure ulcers following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence,Version 4, Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). Tharion G et al. Guidelines for care of persons with spinal cord injury in the community. Vellore, Christian Medical College, 2009. Cardenas DD et.al. Etiology and incidence of re-hospitalization after traumatic spinal cord injury: a multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2004, 85:1757-1763. doi: http://dx.doi.org/10.1016/j.apmr.2004.03.016 PMID:15520970 Gélis A et.al. Therapeutic education in persons with spinal cord injury: a review of the literature. Annals of Physical and Rehabilitation Medicine, 2011, 54:189-210. doi: http://dx.doi.org/10.1016/j.rehab.2011.03.004 PMID:21530443 Consortium for Spinal Cord Medicine. Early acute management in adults with spinal cord injury: a clinical practice guideline for healthcare providers. Washington, DC, Paralyzed Veterans of America, 2008. Bernhard M et.al. Spinal cord injury (SCI): prehospital management. Resuscitation, 2005, 66:127-139. doi: http://dx.doi.org/10.1016/j.resuscitation.2005.03.005 PMID:15950358 Harris MB, Sethi RK. The initial assessment and management of the multiple-trauma patient with an associated spinal injury. Spine, 2006, 31:S9-S15. doi: http://dx.doi.org/10.1097/01.brs.0000217924.56853.0d PMID:16685243 WHO. Guidelines for essential trauma care. Geneva, World Health Organization, 2004. WHO. Prehospital trauma care systems. Geneva, World Health Organization, 2005. Fehlings MG et.al. Early versus delayed decompression for traumatic cervical spinal cord injury: results of Surgical Timing in Acute Spinal Cord Injury Study (STASCIS). PLoS ONE, 2012, 7: doi: http://dx.doi.org/10.1371/journal. pone.0032037 PMID:22384132 Bagnall AM et al. Spinal fixation surgery for acute traumatic spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (1):CD004725. PMID:18254059 Fehlings M, Perrin R. The role and timing of early decompression for cervical spinal cord injury: update with a review of recent clinical evidence. Injury, 2005, 36:S13-S26. doi: http://dx.doi.org/10.1016/j.injury.2005.06.011 Fehlings MG. The timing of surgical intervention in the treatment of spinal cord injury: a systematic review of recent clinical evidence. Spine, 2006, 31:S28-S35. doi: http://dx.doi.org/10.1097/01.brs.0000217973.11402.7f PMID:16685233 Rechtine GR. Nonoperative management and treatment of spinal injuries. Spine, 2006, 31 Suppl:S22-S27. doi: http://dx.doi. org/10.1097/01.brs.0000217947.43730.a6 PMID:16685232 Wood K et.al. Operative compared with nonoperative treatment of a thoracolumbar burst fracture without neurological deficit. A prospective, randomized study. The Journal of Bone and Joint Surgery, 2003, 85-A:773-781. PMID:12728024
91
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
62.
63. 64. 65. 66. 67. 68. 69. 70. 71. 72. 73. 74. 75. 76. 77.
78. 79. 80. 81. 82. 83.
Harrop JS et al. Neurological manifestations of cervical spondylosis: an overview of signs, symptoms, and pathophysiology. Neurosurgery, 2007, 60 Supp1 1;S14–S20. oi:10.1227/01.NEU.0000215380.71097.EC doi: http://dx.doi.org/10.1227/01. NEU.0000215380.71097.EC PMID:17204875 Vanichkachorn JS, Vaccaro AR. Thoracic disk disease: diagnosis and treatment. The Journal of the American Academy of Orthopaedic Surgeons, 2000, 8:159-169. PMID:10874223 NCC-C. Metastatic spinal cord compression: diagnosis and management of patients at risk of or with metastatic spinal cord compression. Cardiff, National Collaborating Centre for Cancer, 2008. Lederle FA et.al. Outcomes following endovascular vs open repair of abdominal aortic aneurysm: a randomized trial. Journal of the American Medical Association, 2009, 302:1535-1542. doi: http://dx.doi.org/10.1001/jama.2009.1426 PMID:19826022 Wang VY, Chou D, Chin C. Spine and spinal cord emergencies: vascular and infectious causes. Neuroimaging Clinics of North America, 2010, 20:639-650. doi: http://dx.doi.org/10.1016/j.nic.2010.07.006 PMID:20974380 Quiñones-Hinojosa A et.al. General principles in the medical and surgical management of spinal infections: a multidisciplinary approach. Neurosurgical Focus, 2004, 17:E1-E15. PMID:15636566 Anderson KD. Targeting recovery: priorities of the spinal cord injured population. Journal of Neurotrauma, 2004, 21:1371- 1383. doi: http://dx.doi.org/10.1089/neu.2004.21.1371 PMID:15672628 Anderson KD et.al. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 2007, 45:328-337. PMID:17033620 Ditunno PL et.al. Who wants to walk? Preferences for recovery after SCI: a longitudinal and cross-sectional study. Spinal Cord, 2008, 46:500-506. doi: http://dx.doi.org/10.1038/sj.sc.3102172 PMID:18209742 Snoek GJ et.al. Survey of the needs of patients with spinal cord injury: impact and priority for improvement in hand function in tetraplegics. Spinal Cord, 2004, 42:526-532. doi: http://dx.doi.org/10.1038/sj.sc.3101638 PMID:15224087 Chang SM et.al. Urologic status of 74 spinal cord injury patients from the 1976 Tangshan earthquake, and managed for over 20 years using the Crede maneuver. Spinal Cord, 2000, 38:552-554. doi: http://dx.doi.org/10.1038/sj.sc.3101060 PMID:11035477 Weld KJ, Dmochowski RR. Effect of bladder management on urological complications in spinal cord injured patients. The Journal of Urology, 2000, 163:768-772. doi: http://dx.doi.org/10.1016/S0022-5347(05)67800-7 PMID:10687973 Wyndaele JJ. Intermittent catheterization: which is the optimal technique? Spinal Cord, 2002, 40:432-437. doi: http://dx.doi. org/10.1038/sj.sc.3101312 PMID:12185603 Correa GI, Rotter KP. Clinical evaluation and management of neurogenic bowel after spinal cord injury. Spinal Cord, 2000, 38:301308. doi: http://dx.doi.org/10.1038/sj.sc.3100851 PMID:10822403 Consortium for Spinal Cord Medicine. Neurogenic bowel management in adults with spinal cord injury. Washington, DC, Paralyzed Veterans of America, 1998. Krassioukov A et al. Neurogenic bowel following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–41 (http://www.scireproject. com/rehabilitationevidence, accessed 25 April 2012). Yasmeen R et.al. How do patients with chronic spinal injury in Pakistan manage their bowels? A cross-sectional survey of 50 patients. Spinal Cord, 2010, 48:872-875. doi: http://dx.doi.org/10.1038/sc.2010.46 PMID:20440300 Ayas S et.al. The effect of abdominal massage on bowel function in patients with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2006, 85:951-955. doi: http://dx.doi.org/10.1097/01.phm.0000247649.00219.c0 PMID:17117000 Branagan G et.al. Effect of stoma formation on bowel care and quality of life in patients with spinal cord injury. Spinal Cord, 2003, 41:680-683. doi: http://dx.doi.org/10.1038/sj.sc.3101529 PMID:14639447 Coggrave M et.al. Progressive protocol in the bowel management of spinal cord injuries. British Journal of Nursing, 2006, 15:11081113. PMID:17170659 Consortium for Spinal Cord Medicine. Sexuality and reproductive health in adults with spinal cord injury: a clinical practice guideline for health-care professionals. Washington, DC, Paralyzed Veterans of America, 2010. Kreuter M, Siosteen A, Biering-Sorensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. Journal of Rehabilitation Medicine, 2008, 40:61-69. doi: http://dx.doi.org/10.2340/16501977-0128 PMID:18176739
92
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
84. 85. 86. 87. 88.
89.
90. 91.
92. 93. 94.
95. 96.
97. 98. 99. 100. 101. 102.
103.
Kreuter M et.al. Women’s sexual functioning and sex life after spinal cord injury. Spinal Cord, 2011, 49:154-160. doi: http:// dx.doi.org/10.1038/sc.2010.51 PMID:20458327 Sipski ML, Richards JS. Spinal cord injury rehabilitation. American Journal of Physical Medicine & Rehabilitation, 2006, 85:310-342. doi: http://dx.doi.org/10.1097/01.phm.0000202105.87011.bf PMID:16554684 Burns AS, Ditunno J. Establishing prognosis and maximizing functional outcomes after spinal cord injury. Spine, 2001, 26 Suppl:S137S145. doi: http://dx.doi.org/10.1097/00007632-200112151-00023 PMID:11805621 Kirshblum S et al. Rehabilitation of Spinal Cord Injury. In: Campagnolo D et al., eds. Spinal Cord Medicine. 2nd ed. Philadelphia, PA, Lippincott Williams & Wilkins, 2011: 312-313. Beekhuizen KS, Field-Fote EC. Sensory stimulation augments the effects of massed practice training in persons with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2008, 89:602-608. doi: http://dx.doi.org/10.1016/j. apmr.2007.11.021 PMID:18373988 Connolly SJ et al. Upper limb rehabilitation following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). Kloosterman MGM, Snoek GJ, Jannink NJA. Systematic review of the effects of exercise therapy on the upper extremity of patients with spinal-cord injury. Spinal Cord, 2009, 47:196-203. doi: http://dx.doi.org/10.1038/sc.2008.113 PMID:18825160 Lam T et al. Lower limb rehabilitation following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–47 (http://www.scireproject. com/rehabilitationevidence, accessed 25 April 2012). Mehrholz J et al. Locomotor training for walking after spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (2):CD006676. PMID:18425962 Kreutz D. Standing frames and standing wheelchairs: implications for standing. Topics in Spinal Cord Injury Rehabilitation, 2000, 5:24-28. doi: http://dx.doi.org/10.1310/P8YC-WGEH-C1VP-2VC1 Shields RK, Dudley-Javoroski S. Musculoskeletal plasticity after acute spinal cord injury: effects of long-term neuromuscular electrical stimulation training. Journal of Neurophysiology, 2006, 95:2380-2390. doi: http://dx.doi.org/10.1152/ jn.01181.2005 PMID:16407424 Wolfe DL et al. Physical activity and SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). Borg J, Lindström A, Larsson S. Assistive technology in developing countries: a review from the perspective of the Convention on the Rights of Persons with Disabilities. Prosthetics and Orthotics International, 2011, 35:20-9. doi: http:// dx.doi.org/10.1177/0309364610389351 PMID:21515886 Bryden AM et.al. Perceived outcomes and utilization of upper extremity surgical reconstruction in individuals with tetraplegia at model spinal cord injury systems. Spinal Cord, 2004, 42:169-176. doi: http://dx.doi.org/10.1038/sj.sc.3101579 PMID:14758349 Wuolle KS et.al. Satisfaction with upper-extremity in individuals with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2003, 84:1145-1149. doi: http://dx.doi.org/10.1016/S0003-9993(03)00292-2 PMID:12917852 Snoek GJ et.al. Decision for reconstructive interventions of the upper limb in individuals with tetraplegia: the effect of treatment characteristics. Spinal Cord, 2008, 46:228-233. doi: http://dx.doi.org/10.1038/sj.sc.3102110 PMID:17680013 Bombardier CH et.al. Do preinjury alcohol problems predict poorer rehabilitation progress in persons with spinal cord injury? Archives of Physical Medicine and Rehabilitation, 2004, 85:1488-1492. doi: http://dx.doi.org/10.1016/j. apmr.2003.10.010 PMID:15375822 Fann JR et.al. Depression after spinal cord injury: comorbidities, mental health service use, and adequacy of treatment. Archives of Physical Medicine and Rehabilitation, 2011, 92:352-360. doi: http://dx.doi.org/10.1016/j.apmr.2010.05.016 PMID:21255766 Hastings J et.al. The differences in self-esteem, function, and participation between adults with low cervical motor tetraplegia who use power or manual wheelchairs. Archives of Physical Medicine and Rehabilitation, 2011, 92:1785-1788. doi: http://dx.doi.org/10.1016/j.apmr.2011.03.023 PMID:21762872 Krause JS. Depression after spinal cord injury: relation to gender, ethnicity, ageing and socioeconomic indicators. Archives of Physical Medicine and Rehabilitation, 2000, 81:1099-1109. doi: http://dx.doi.org/10.1053/apmr.2000.7167 PMID:10943762
93
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
104. Kennedy P, Evans M, Sandhu N. Psychological adjustment to spinal cord injury: the contribution of coping, hope and cognitive appraisals. Psychology Health and Medicine, 2009, 14:17-33. doi:http://dx.doi.org/10.1080/13548500802001801 PMID:19085309 105. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http:// dx.doi.org/10.1038/sc.2011.182 106. Consortium for Spinal Cord Medicine. Depression following spinal cord injury: a clinical practice guideline for primary care physicians. Paralyzed Veterans of America, 1998. 107. Kennedy P et.al. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injury. The British Journal of Clinical Psychology, 2003, 42:41-52. doi: http://dx.doi.org/10.1348/014466503762842002 PMID:12675978 108. Boschen KA, Tonack M, Gargaro J. Long-term adjustment and community reintegration following spinal cord injury. International Journal of Rehabilitation Research, 2003, 26:157-164. doi: http://dx.doi.org/10.1097/00004356-200309000- 00001 PMID:14501566 109. Kroll T, ed. Focus on disability: trends in research and application. Hauppauge, NY, Nova Science Publishers, 2008. 110. Ljungberg I et.al. Using peer mentoring for people with spinal cord injury to enhance self-efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 2011, 20:351-358. doi: http://dx.doi.org/10.1111/j.1365- 2702.2010.03432.x PMID:21219518 111. Sherman JE, DeVinney DJ, Sperling KB. Social support and adjustment after spinal cord injury: influence of past peermentoring experiences and current live-in partner. Rehabilitation Psychology, 2004, 49:140-149. doi: http://dx.doi. org/10.1037/00905550.49.2.140 112. Tate DG, Boninger ML, Jackson AB. Future directions for spinal cord injury research: recent developments and model systems contributions. Archives of Physical Medicine and Rehabilitation, 2011, 92:509-515. doi: http://dx.doi.org/10.1016/j. apmr.2010.07.243 PMID:21353833 113. Bergström AL, Samuelsson K. Evaluation of manual wheelchairs by individuals with spinal cord injuries. Disability and Rehabilitation. Assistive Technology, 2006, 1:175-182. doi: http://dx.doi.org/10.1080/17483100600573230 PMID:19260185 114. Sisto SA, Forrest GF, Faghri PD. Technology for mobility and quality of life in spinal cord injury: analyzing a series of options available. IEEE Engineering in Medicine and Biology Magazine, 2008, 27:56-68. doi: http://dx.doi.org/10.1109/ EMB.2007.907398 PMID:18463021 115. Biering-Sørensen F, Hansen RB, Biering-Sørensen J. Mobility aids and transport possibilities 10–45 years after spinal cord injury. Spinal Cord, 2004, 42:699-706. doi: http://dx.doi.org/10.1038/sj.sc.3101649 PMID:15289807 116. Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 2001, 15:600-606. doi: http://dx.doi.org/10.1191/0269215501cr453oa PMID:11777090 117. Hedrick B et.al. Employment issues and assistive technology use for persons with spinal cord injury. Journal of Rehabilitation Research and Development, 2006, 43:185-198. doi: http://dx.doi.org/10.1682/JRRD.2005.03.0062 PMID:16847785 118. Phillips B, Zhao H. Predictors of assistive technology abandonment. Assistive Technology, 1993, 5:36-45. doi: http://dx.doi. org/10.1080/10400435.1993.10132205 PMID:10171664 119. Dieruf K, Ewer L, Boninger D. The natural-fit handrim: factors related to improvement in symptoms and function in wheelchair users. The Journal of Spinal Cord Medicine, 2008, 31:578-585. PMID:19086716 120. Ayyappa MS, Downs K. Spinal orthoses in spinal cord medicine: principles and practice. New York, Demos Medical Publishing Inc., 2003. 121. Yamane A. Lower limb orthoses and rehabilitation. New York, NY, Demos Medical Publishing Inc, 2003. 122. Scherer MJ, Cushman LA. Measuring subjective quality of life following spinal cord injury: a validation study of the assistive technology device predisposition assessment. Disability and Rehabilitation, 2001, 23:387-393. doi: http://dx.doi. org/10.1080/09638280010006665 PMID:11394589 123. Chen YL et.al. A head orientated wheelchair for people with disabilities. Disability and Rehabilitation, 2003, 25:249-253. doi: http://dx.doi.org/10.1080/0963828021000024979 PMID:12623613
94
Κεφάλαιο 4
Υγειονομική περίθαλψη και ανάγκες αποκατάστασης
124. Regan MA et.al. A systematic review of the therapeutic interventions for pressure ulcers after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:213-231. doi: http://dx.doi.org/10.1016/j.apmr.2008.08.212 PMID:19236976 125. Atkins MA, Clark D, Waters RL, eds. Upper limb orthoses in spinal cord medicine: principles and practice. New York, Demos Medical Publishing Inc., 2003. 126. Atkins MS et.al. Mobile arm supports: evidence-based benefits and criteria for use. The Journal of Spinal Cord Medicine, 2008, 31:388-393. PMID:18959356 127. Norweg A et.al. Patterns, predictors, and associated benefits of driving a modified vehicle after spinal cord injury: findings from the national spinal cord injury model systems. Archives of Physical Medicine and Rehabilitation, 2011, 92:477-483. doi: http://dx.doi.org/10.1016/j.apmr.2010.07.234 PMID:21353830 128. Bodine C, Buning M. The role of assistive technology in rehabilitation. In: Braddom R, ed. Physical medicine & rehabilitation, 3rd ed. Cambridge, MA, Elsevier, 2005. 129. Goodman N, Jette AM. Computer and Internet use by persons after traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:1492-1498. doi: http://dx.doi.org/10.1016/j.apmr.2007.12.038 PMID:18674985 130. Sears A, Young M. The human-computer interaction handbook: fundamentals, evolving technologies and emerging applications. Hillsdale, NJ, L Erlbaum Associates Inc, 2002. 131. Craig A et.al. The effectiveness of a hands-free environmental control system for the profoundly disabled. Archives of Physical Medicine and Rehabilitation, 2002, 83:1455-1458. doi: http://dx.doi.org/10.1053/apmr.2002.34624 PMID:12370885 132. Allen S, Resnik L, Roy J. Promoting independence for wheelchair users: the role of home accommodations. The Gerontologist, 2006, 46:115-123. doi: http://dx.doi.org/10.1093/geront/46.1.115 PMID:16452291 133. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disability and Rehabilitation, 2003, 25:487-490. doi: http://dx.doi.org/10.1080/0963828031000071723 PMID:12745944 134. Driscoll MP, Rodger SA, De Jonge DM. Factors that prevent or assist the integration of assistive technology into the workplace for people with spinal cord injuries: perspectives of the users and their employers and co-workers. Journal of Vocational Rehabilitation, 2001, 16:53-66. 135. Scherer MJ. Living in the state of stuck. How technology impacts the lives of people with disabilities, 3rd edition. Cambridge, MA, Brookline Books, 2000. 136. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. 137. Rigby P et.al. Impact of electronic aids to daily living on the lives of persons with cervical spinal cord injuries. Assistive Technology, 2005, 17:89-97. doi: http://dx.doi.org/10.1080/10400435.2005.10132099 PMID:16392713 138. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/ oti.228 PMID:17624872 139. Glumac LK et.al. Guatemalan caregivers’ perceptions of receiving and using wheelchairs donated for their children. Pediatric Physical Therapy, 2009, 21:167-175. doi: http://dx.doi.org/10.1097/PEP.0b013e3181a34a2b PMID:19440126 140. Rushton PW et.al. Satisfaction with participation using a manual wheelchair among individuals with spinal cord injury. Spinal Cord, 2010, 48:691-696. doi: http://dx.doi.org/10.1038/sc.2009.197 PMID:20125106 141. Judge S, Floyd K, Jeffs T. Using an assistive technology toolkit to promote inclusion. Early Childhood Education Journal, 2008, 36:121-126. doi: http://dx.doi.org/10.1007/s10643-008-0257-0 142. Ameratunga S et.al. Rehabilitation of the injured child. Bulletin of the World Health Organization, 2009, 87:327. doi: http:// dx.doi.org/10.2471/BLT.09.057067 PMID:19551242 143. Ripat J. Function and impact of electronic aids to daily living for experienced users. Technology and Disability, 2006, 18:79-87. 144. Rigby P, Ryan SE, Campbell KA. Electronic aids to daily living and quality of life for persons with tetraplegia. Disability and Rehabilitation. Assistive Technology, 2011, 6:260-267. doi: http://dx.doi.org/10.3109/17483107.2010.522678 PMID:20883120 145. Agree EM et.al. Reconsidering substitution in long-term care: when does assistive technology take the place of personal care? Journal of Gerontology: Social Sciences, 2005, 60:S272-S280. doi: http://dx.doi.org/10.1093/geronb/60.5.S272 PMID:16131628 146. Field MJ, Jette AM. The future of disability in America. Washington, DC, The National Academies Press, 2007.
95
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
147. Schraner I et.al. Using the ICF in economic analyses of assistive technology systems: methodological implications of a user standpoint. Disability and Rehabilitation, 2008, 30:916-926. PMID:18484387 148. Yeo JD et.al. Mortality following spinal cord injury. Spinal Cord, 1998, 36:329-336. doi: http://dx.doi.org/10.1038/ sj.sc.3100628 PMID:9601112 149. DeVivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and causes of death among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1411-1419. doi: http://dx.doi.org/10.1016/S0003- 9993(99)90252-6 PMID:10569435 150. Krause JS et.al. Health status, community integration, and economic risk factors for mortality after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1764-1773. doi: http://dx.doi.org/10.1016/j.apmr.2004.06.062 PMID:15520971 151. Chiodo AE et.al. Spinal cord injury medicine: 5: long-term medical issues and health maintenance. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl. 1:S76-S83. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.015 PMID:17321853 152. Fernhall B et.al. Health implications of physical activity in individuals with spinal cord injury: a literature review. Journal of Health and Human Services Administration, 2008,468-502. PMID:18236700 153. Krause JS, Saunders LL. Health, secondary conditions, and life expectancy after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:1770-1775. doi: http://dx.doi.org/10.1016/j.apmr.2011.05.024 PMID:22032212 154. McColl MA et al. Primary care for people with SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–24 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 155. Soden RJ et.al. Causes of death after spinal cord injury. Spinal Cord, 2000, 38:604-610. doi: http://dx.doi.org/10.1038/ sj.sc.3101080 PMID:11093321 156. Bauman WA, Spungen AM. Coronary heart disease in individuals with spinal cord injury: assessment of risk factors. Spinal Cord, 2008, 46:466-476. doi: http://dx.doi.org/10.1038/sj.sc.3102161 PMID:18180789 157. Engel S, Leong G. Health maintenance for adults with spinal cord injuries: targeting health professionals. Sydney, NSW State Spinal Cord Injury Service, 2008. 158. Myers J, Lee M, Kiratli J. Cardiovascular disease in spinal cord injury: an overview of prevalance, risk, evaluation and management. American Journal of Physical Medicine & Rehabilitation, 2007, 86:142-152. doi: http://dx.doi.org/10.1097/ PHM.0b013e31802f0247 PMID:17251696 159. Warburton DER et al. Cardiovascular health and exercise following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–38 (http://www. scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 160. Wahman K et.al. Cardiovascular disease risk factors in persons with paraplegia: the Stockholm spinal cord injury study. Journal of Rehabilitation Medicine, 2010, 42:272-278. doi: http://dx.doi.org/10.2340/16501977-0510 PMID:20419873 161. Cowan RE, Nash M. Cardiovascular disease, SCI and exercise: unique risks and focused countermeasures. Disability and Rehabilitation, 2010, 32:2228-2236. doi: http://dx.doi.org/10.3109/09638288.2010.491579 PMID:20524925 162. Johnston MV et.al. Preventive services and health behaviors among people with spinal cord injury. The Journal of Spinal Cord Medicine, 2005, 28:43-54. PMID:15832903 163. Krause JS et.al. Risk of mortality after spinal cord injury: an 8-year prospective study. Archives of Physical Medicine and Rehabilitation, 2009, 90:1708-1715. doi: http://dx.doi.org/10.1016/j.apmr.2009.04.020 PMID:19801060 164. Ditor DS. Maintenance of exercise participation in individuals with spinal cord injury: effects on quality of life, stress and pain. Spinal Cord, 2003, 41:446-450. doi: http://dx.doi.org/10.1038/sj.sc.3101487 PMID:12883542 165. Fekete C, Rauch A. Correlates and determinants of physical activity in persons with spinal cord injury: a review using the International Classification of Functioning, Disability and Health as reference framework. Disability and Health Journal, 2012, 5:140-150. doi: http://dx.doi.org/10.1016/j.dhjo.2012.04.003 PMID:22726854
96
Κεφάλαιο 5 Ενίσχυση συστημάτων υγείας
97
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
"Είχα τον τραυματισμό μου σε μια εποχή που το κύριο νοσοκομείο της κοινότητάς μου ήταν σε κακό χάλι. Η αίθουσα του χειρουργείου δεν λειτουργούσε και ως εκ τούτου, η χειρουργική επέμβαση δεν θα μπορούσε να πραγματοποιηθεί! Η οικογένειά μου προσπάθησε με όλα τα μέσα να ζητήσει από το νοσοκομείο να με μεταφέρει σε μια γειτονική χώρα, αλλά οι προσπάθειες τους ήταν μάταιες. Ο Δ/ντης της Ορθοπεδικής Κλινικής εκείνη την εποχή ήταν τόσο "βάρβαρος" που τα λόγια του κατέστρεψαν τη θέλησή μου να παλέψω. Μια μέρα μπήκε στο δωμάτιο μου στο νοσοκομείο, κάλεσε αγενέστατα τη μητέρα και την οικογένεια μου, και τους είπε ότι θα ήμουν φυτό για το υπόλοιπο της ζωής μου και ότι ποτέ δεν θα ήμουν σε θέση να καθίσω ή να περπατήσω ξανά!" (Angela, Ουγκάντα) "Εγώ έχω μια θετική εμπειρία με τους γιατρούς, η οποία ήταν η πλήρης και λεπτομερής εξήγηση της αναπηρίας μου, γεγονός που έκανε πιο εύκολο σε εμένα να κατανοήσω και να αντιμετωπίσω τον τραυματισμό μου. Επιπλέον είχα και την παρότρυνση από τους γιατρούς να ζήσω ευτυχισμένα με την αναπηρία μου, ώστε να μπορώ με θετική σκέψη να ζω με αυτήν. Θεωρώ πρόκληση, ιδιαίτερα τη μακροπρόθεσμη διατήρηση της υγείας, γιατί στη βλάβη του νωτιαίου μυελού, έχουμε να αντιμετωπίσουμε πολλές επιπλοκές, όπως αυτές του εντέρου, της ουροδόχου κύστης, της κίνησης των άκρων και είναι ιδιαίτερα δύσκολο έργο να επιτευχθεί έτσι η ισορροπία της υγείας μου". (Sulieman, Σαουδική Αραβία) "Ένα από τα σημαντικότερα προβλήματα που αντιμετώπισα μετά την αποχώρησή μου από το κέντρο αποκατάστασης ήταν η εξεύρεση γιατρών, οι οποίοι θα ήταν εξοικειωμένοι με τις ιδιαίτερες ανάγκες και τα προβλήματα των ασθενών με ΚΝΜ. Με τους σπασμούς είναι δύσκολο να ταξιδέψεις, να μεταφερθείς και να καθίσεις στην εξεταστική καρέκλα. Επειδή οι σπασμοί έτειναν να είναι λιγότερο συχνοί το πρωί, εγώ αναζητούσα ένα ραντεβού γενικότερα το πρωί. Αλλά δεν υπάρχουν αρκετά γραφεία ιατρών που να είναι ανοιχτά και πρόθυμα για μια τέτοια χάρη. Προς στιγμήν, θεώρησα ότι τα πόδια μου θα χορεύουν διαρκώς. Ένα άλλο πρόβλημα ήταν η αυτόνομη δυσαντανακλαστικότητα (ΑΔ). Σχεδόν το 90% των γιατρών εκτός του κέντρου αποκατάστασης δεν είχαν γνώση αυτού του φαινομένου. Έτσι, σχεδόν κάθε φορά έπρεπε να εξηγήσω ότι θα έχω ΑΔ, όταν το πόδι μου διπλώσει πλήρως ή αν η θέση μου είναι άβολη. Ακόμη και μετά την αναφορά του φαινομένου, ξεχνούσαν να ελέγχουν τακτικά την κάμψη του ποδιού και εγώ συχνά παρουσίαζα ΑΔ. Συνήθιζα να παίρνω τον αδελφό μου μαζί για να ελέγχει συχνά το σημάδια της ΑΔ". (Alexis, Ινδία) "Κατά τη διάρκεια του σεισμού στην Αϊτή το 2010, χτυπήθηκα από έναν τοίχο και τραυματίστηκα σοβαρά. Οι κακώσεις μου διαγνώστηκαν ως τετραπληγία στο επίπεδο Α6. Πέντε μήνες μετά το σεισμό, έκανα επανεισαγωγή στο Νοσοκομείο προσφυγών της Αϊτής για αποκατάσταση! Εκεί πήρα και το πρώτο μου αμαξίδιο. Ωστόσο, αυτό το αμαξίδιο ούτε στο μέγεθός μου ταίριαζε (είμαι πολύ ψηλός), ούτε ήταν το κατάλληλο για το επίπεδο της κάκωσης μου. Στην Αϊτή, το σύστημα υγείας δεν ενδιαφέρεται για την παροχή αναπηρικών αμαξιδίων. Ως εκ τούτου, θα πρέπει να το δοκιμάσεις και να το πληρώσεις μόνος σου. Ένα χρόνο μετά το συμβάν της κάκωσης, έλαβα ένα νέο χειροκίνητο αναπηρικό αμαξίδιο, που μου παρείχε μια Αμερικανική οργάνωση". (Samuel, Αϊτή)
98
Ενδυνάμωση των συστημάτων υγείας Το κεφάλαιο 4 έδωσε μια επισκόπηση των αναγκών υγείας, αποκατάστασης και υποστηρικτικής τεχνολογίας στα άτομα με Κακώσεις Νωτιαίου Μυελού (ΚΝΜ). Σε αυτό το κεφάλαιο αναλύεται το πώς τα συστήματα υγείας μπορούν να ανταποκριθούν σε αυτές τις ανάγκες. Προς το παρόν, η ανταπόκριση του συστήματος υγείας στα άτομα με ΚΝΜ είναι ανεπαρκής σε πολλές χώρες. Αυτό έχει ως αποτέλεσμα, η θνησιμότητα να είναι αδικαιολόγητα υψηλή. H επένδυση στις σωστές εγκαταστάσεις και στις δεξιότητες μπορεί να συμβάλλει στην επιβίωση των ατόμων με ΚΝΜ, στην κάλυψη των αναγκών και στην υπεράσπιση των ανθρωπίνων δικαιωμάτων τους . Ο Παγκόσμιος Οργανισμός Υγείας (ΠΟΥ) προωθεί μια προσέγγιση "ενδυνάμωσης του συστήματος" για να βελτιώσει την απόδοση των συστημάτων υγείας, λαμβάνοντας υπόψη τα εξής έξι "δομικά στοιχεία": την ηγεσία και τη διακυβέρνηση, την παροχή υπηρεσιών, τους ανθρώπινους πόρους, την τεχνολογία της υγείας, τα πληροφοριακά συστήματα και την χρηματοδότηση (1). Αν και αυτό το κεφάλαιο αναφέρεται σε κάθε τομέα χωριστά, πρέπει να αναγνωριστεί ότι η αλληλεπίδραση αυτών των τομέων - καθώς επίσης και ο συντονισμός τους με άλλους τομείς, όπως η εκπαίδευση, η απασχόληση και η κοινωνική πρόνοια - δίνει τη δυνατότητα στους ανθρώπους με ΚΝΜ να έχουν πρόσβαση στην περίθαλψη που χρειάζονται. Η κάκωση νωτιαίου μυελού έχει σχέση με όλους σχεδόν τους τομείς ενός συστήματος υγείας. Για αυτό το λόγο, μέτρα που διασφαλίζουν την αποτελεσματική εκπλήρωση των αναγκών των ατόμων με ΚΝΜ, έχουν τη δυνατότητα να ωφελήσουν, όχι μόνο τα άτομα με ΚΝΜ αλλά και όλους τους υπόλοιπους που χρησιμοποιούν το σύστημα υγείας. Το κεφάλαιο ολοκληρώνεται με μια σειρά από συστάσεις, οι οποίες παρέχουν καθοδήγηση σε χώρες που επιθυμούν να ενδυναμώσουν τις δυνατότητες των συστημάτων υγείας τους για να ανταποκριθούν στις ανάγκες των ατόμων με ΚΝΜ.
5
Ανεκπλήρωτες ανάγκες Υγειονομική περίθαλψη Η Παγκόσμια αναφορά στην αναπηρία έδειξε ότι τα άτομα με αναπηρία ζητούν περισσότερη ενδονοσοκομειακή και εξωνοσοκομειακή περίθαλψη από ό,τι τα άτομα χωρίς αναπηρία. Από την άλλη αναφέρει ότι τα άτομα με ειδικές ανάγκες δεν λαμβάνουν περισσότερη φροντίδα από ότι τα άτομα χωρίς αναπηρία (2). Για παράδειγμα, έχει βρεθεί ότι τα άτομα με αναπηρία λαμβάνουν λιγότερα μέτρα ελέγχου και πρόληψης, όπως μαστογραφία, τεστ Παπανικολάου και καθοδήγηση για διακοπή καπνίσματος από ότι ο γενικός πληθυσμός (3, 4). Συγκεκριμένα στοιχεία σχετικά με τη χρήση των υπηρεσιών υγειονομικής περίθαλψης και τις ανεκπλήρωτες ανάγκες των ατόμων με ΚΝΜ είναι συχνά δύσκολο να καταγραφούν, ιδιαίτερα σε χώρες με χαμηλό εισόδημα. Παρ’ όλα αυτά, τα διαθέσιμα στοιχεία στηρίζουν τα συμπεράσματα 99
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
της Παγκόσμιας αναφοράς στην αναπηρία, καταδεικνύοντας ότι τα άτομα με ΚΝΜ συχνά έχουν βασικές και ανεκπλήρωτες ανάγκες για υπηρεσίες παρακολούθησης (5), όπως επίσης και για την πρωτοβάθμια φροντίδα (6), από τη στιγμή που έχουν ολοκληρώσει την αρχική φάση της αποκατάστασης τους. Για παράδειγμα, μια ομαδική εργασία που διεξήχθη στον Καναδά, έδειξε ότι τα άτομα με ΚΝΜ ήταν πιο πιθανό να έχουν επαφή με το σύστημα υγείας (συμπεριλαμβανόμενων και των υψηλότερων ποσοστών νοσηλείας) απ' ότι ο γενικός πληθυσμός κατά τη διάρκεια εξαετούς περιόδου παρακολούθησης (7). Μία δανέζικη μελέτη βάσης δεδομένων, η οποία περιελάμβανε ασθενείς με ΚΝΜ, εννέα χρόνια μετά τον τραυματισμό τους, διαπίστωσε ότι αυτοί οι ασθενείς είχαν εισαχθεί στο νοσοκομείο 0,5 φορές το χρόνο, το οποίο αντιπροσώπευε τρεις φορές περισσότερες εισαγωγές από ότι η ομάδα ελέγχου. Οι ίδιοι ασθενείς με ΚΝΜ επισκέφτηκαν γενικούς ιατρούς και φυσικοθεραπευτές έξι φορές περισσότερο από εκείνους της ομάδας ελέγχου (8). Οι ανεκπλήρωτες ανάγκες πρωτοβάθμιας φροντίδας των ανθρώπων με ΚΝΜ περιλαμβάνουν την προαγωγή της υγείας, τις υπηρεσίες πρόληψης και την ιατρική αντιμετώπιση (9). Πιο συγκεκριμένα, οι ανάγκες για ενημέρωση και οι ανησυχίες που έχουν σχέση με την ψυχολογική, σεξουαλική και αναπαραγωγική υγιεία δεν καλύπτονται επαρκώς (9). Μια μελέτη στην Ολλανδία έδειξε ότι οι άνθρωποι με ΚΝΜ που ζουν στο σπίτι είχαν σημαντικές ανεκπλήρωτες ανάγκες για φροντίδα, συμπεριλαμβανομένων της πληροφόρησης και της ψυχοκοινωνικής φροντίδας (10). Οι συμμετέχοντες στην ολλανδική μελέτη, θεωρούσαν επίσης, ότι δευτερογενείς καταστάσεις που συνδέονταν με ΚΝΜ σε μεγάλο βαθμό μπορούσαν να προληφθούν. Για παράδειγμα, το 50% των ελκών πιέσεως και το 25% των προβλημάτων της ουροδόχου κύστης, του εντέρου και της σεξουαλικότητας θεωρήθηκαν ότι μπορούσαν να προληφθούν, ιδιαίτερα με τη βελτίωση της πρόσβασης σε ποιοτική περίθαλψη και ενημέρωση, καθώς και μέσω της αυτοδιαχείρισης της υγείας και της συμπεριφοράς του ατόμου (10).
Αποκατάσταση Παγκόσμια δεδομένα για τις ακάλυπτες ανάγκες των υπηρεσιών αποκατάστασης είναι επίσης πολύ περιο100
ρισμένα, συμπεριλαμβανομένων της υποστηρικτικής τεχνολογίας (2). Εθνικές μελέτες που πραγματοποιήθηκαν στη Μαλάουι, τη Μοζαμβίκη, τη Ναμίμπια, τη Ζάμπια και το Ζιμπάμπουε σχετικά με τις συνθήκες διαβίωσης των ανθρώπων με ειδικές ανάγκες, συμπεριλαμβανομένων και των ατόμων με ΚΝΜ, έδειξε ότι υπήρχαν κενά στην παροχή υπηρεσιών στην ιατρική αποκατάσταση και στα υποστηρικτικά βοηθήματα (1115). Ελλείψει στοιχείων σχετικά με την ανάγκη και την ακάλυπτη ανάγκη, η έρευνα που μελετά τις προοπτικές του καταναλωτή και τις εμπειρίες της αποκατάστασης μπορεί να είναι χρήσιμη για την παροχή πληροφοριών σχετικά με το αν οι υπηρεσίες ανταποκρίνονται στις ανάγκες των ατόμων με ΚΝΜ. Οι άνθρωποι με ΚΝΜ έχουν αναφέρει ότι η αποκατάσταση δεν τους προετοιμάζει επαρκώς για τη μετάβαση τους στη ζωή της κοινότητας και ότι υπάρχουν κενά μεταξύ των δεξιοτήτων που διδάσκονται στα προγράμματα αποκατάστασης και αυτών που απαιτούνται στον "πραγματικό κόσμο" (16, 17). Η ολλανδική μελέτη, που παρουσιάστηκε παραπάνω, ανέφερε ότι το 72% των συμμετεχόντων σημείωναν την ανάγκη για επιπλέον φροντίδα, συμπεριλαμβανομένης της καθοδήγησης και της επαναξιολόγησης σε κέντρο αποκατάστασης, της τηλεφωνικής συμβουλευτικής και των επισκέψεων σε σπίτια (10). Η υποστηρικτική τεχνολογία είναι μία σημαντική πτυχή: σε χαμηλού και μεσαίου εισοδήματος χώρες, εκτιμάται ότι μόνο το 5-15% των ατόμων με αναπηρίες που έχουν ανάγκη βοηθητικών συσκευών, έχουν πρόσβαση σε αυτά (18). Η προαναφερθείσα έρευνα στη νότια Αφρική, αποκάλυψε ότι στην πραγματικότητα, μόνο το 17-37% των ανθρώπων, που εξέφρασαν την ανάγκη για βοηθητικές συσκευές, τις έλαβαν, με τους περισσότερους να είναι άντρες σε σχέση με τις γυναίκες που κάνουν χρήση βοηθητικών συσκευών (Μαλάουι: 25,3% άνδρες, 14,1% γυναίκες /Ζάμπια: 15,7% άνδρες, 11,9% γυναίκες), καθώς επίσης οι κάτοικοι των αστικών κέντρων είχαν μεγαλύτερο ποσοστό χρήσης βοηθητικών συσκευών από τους κατοίκους της υπαίθρου. Επίσης και οι άνθρωποι που ζουν σε χώρες υψηλού εισοδήματος μπορεί να έχουν ακάλυπτες ανάγκες για την υποστηρικτική τεχνολογία. Μια εθνική έρευνα στις ΗΠΑ στα άτομα με ΚΝΜ, με πολλαπλή σκλήρυνση και με εγκεφαλική παράλυση βρήκε ότι περισ-
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
σότεροι από τους μισούς (56,5%) των ερωτηθέντων ανέφεραν ότι χρειάστηκαν υποστηρικτική τεχνολογία κατά τη διάρκεια του προηγούμενου έτους, αλλά 28,4% εκείνων, δεν την έλαβαν κάθε φορά που χρειαζόταν (19). Σε μια μελέτη ΚΝΜ στην Ολλανδία, η πλειοψηφία των ερωτηθέντων (56,7%) δήλωσαν ότι είχαν προβλήματα στην απόκτηση των αναπηρικών αμαξιδίων τους και κατά συνέπεια, το εξιτήριο τους από τα κέντρα αποκατάστασης συνήθως καθυστερούσε λόγω του χρόνου αναμονής. Επιπλέον, 35,9% των ατόμων που χρησιμοποίησαν χειροκίνητα αμαξίδια και το 47,5% εκείνων που χρησιμοποίησαν δυναμικά αμαξίδια είχαν παράπονα για τα αναπηρικά αμαξίδιά τους. Η ίδια μελέτη ανέφερε επίσης ότι, την ίδια ώρα που ένα υψηλό ποσοστό των ερωτηθέντων (78,3%) συμφώνησαν ότι το σπίτι τους είχε τις κατάλληλες τροποποιήσεις, ένα σημαντικό ποσοστό (38,1%) ανέφεραν ότι δεν έλαβαν όλες τις τροποποιήσεις που είχαν ζητήσει (20).
Ενίσχυση των συστημάτων υγείας Ηγεσία και διακυβέρνηση Η Σύμβαση για τα Δικαιώματα των Ατόμων με Αναπηρία (CRPD) αναφέρει ότι "όλα τα άτομα με ειδικές ανάγκες έχουν το δικαίωμα να απολαμβάνουν το υψηλότερο δυνατό επίπεδο υγείας χωρίς διακρίσεις λόγω της αναπηρίας" και ότι τα συμβαλλόμενα κράτη πρέπει να λάβουν τα κατάλληλα μέτρα για να εξασφαλίσουν την πρόσβαση στις υπηρεσίες υγείας, συμπεριλαμβανομένης και της αποκατάστασης, όπως περιγράφηκε και στα δύο άρθρα της Σύμβασης, το άρθρο 25 και το άρθρο 26 (21). Η Σύμβαση για τα Δικαιώματα των ΑμεΑ (CRPD) αναφέρει επίσης ρητά, την ευθύνη των συμβαλλόμενων κρατών να διασφαλίσουν την πρόσβαση στην υποστηρικτική τεχνολογία στα άτομα με ειδικές ανάγκες. Η εκπλήρωση των υποχρεώσεων αυτών θα απαιτήσει εθνική νομοθεσία, πολιτικές και στρατηγικές. Ωστόσο, σε πολλές χώρες χαμηλού και μεσαίου εισοδήματος, αυτές οι υποχρεώσεις δεν έχουν καμία θέση και η παροχή τους και η πρόσβαση στις υπηρεσίες υγείας και αποκατάστασης, συμπεριλαμβανομένων των υποστηρικτικών τεχνολογιών, δεν μπορεί να εξασφαλιστούν (2). Ως παράδειγμα, μια παγκόσμια
έρευνα στην εφαρμογή των Ηνωμένων Εθνών Πρότυπων κανόνων για την Εξίσωση των Ευκαιριών των Ατόμων με Αναπηρία τόνισε ότι το 50% των 114 ερωτηθέντων χωρών δεν είχε θεσπίσει νομοθεσία σχετικά με την αποκατάσταση. Το 42% των χωρών δεν είχαν θεσπίσει πολιτικές αποκατάστασης, το 48% δεν είχαν σε ισχύ πολιτικές που να είχαν σχέση ιδιαίτερα με την παροχή βοηθητικών συσκευών και το 40% δεν είχαν καθορίσει προγράμματα αποκατάστασης (22). Όπου η κυβέρνηση θεσπίζει νομοθεσία και πολιτικές, αυτές συχνά επιβάλλουν περιορισμούς σχετικά με τον τύπο και το φάσμα της παρεχόμενης φροντίδας που δημιουργεί μια δυσκολία στους ανθρώπους με ΚΝΜ να προσέλθουν στην φροντίδα που χρειάζονται. Οι αλληλοσυγκρουόμενοι ορισμοί της αναπηρίας, τα κριτήρια επιλογής για βοήθεια και οι πολύπλοκες διαδικασίες μπορούν να δυσκολέψουν τους ανθρώπους αυτούς να αποκτήσουν και να υποστηρίξουν τους πόρους που χρειάζονται (23). Χωρίς την κατάλληλη νομοθεσία, τις πολιτικές και τις στρατηγικές είναι δύσκολο να εξασφαλιστεί στους ανθρώπους με ΚΝΜ επαρκή πρόσβαση στην υγειονομική περίθαλψη και στις υπηρεσίες αποκατάστασης. Ειδικές πολιτικές για την αναπηρία (συμπεριλαμβανομένων των ατόμων με ΚΝΜ) πρέπει να πραγματοποιηθούν, καθώς και να εξασφαλιστεί ότι οι ανάγκες οι ιατρικές και της αποκατάστασης των ατόμων με ΚΝΜ απευθύνονται σε άλλους τομείς της κυβέρνησης, συμπεριλαμβανομένης της στέγασης, των μεταφορών, της εκπαίδευσης, της αναψυχής και της ψυχαγωγίας, της απασχόλησης και της κοινωνικής πρόνοιας. Σχέδια, επίσης, θα πρέπει να λάβουν χώρα σε περίπτωση ανθρωπιστικών καταστροφών, όπως σεισμοί, που μπορεί να προκαλέσουν σε ένα μεγάλο αριθμό ατόμων, τραυματική ΚΝΜ και έτσι να συντριβούν τα ήδη αδύναμα συστήματα (βλέπε Πλαίσιο 5.1). Οι χώρες πρέπει να υιοθετήσουν μια σταδιακή προσέγγιση για τη συγκρότηση των δυνατοτήτων των συστημάτων υγείας που θα καλύψουν τις ανάγκες των ατόμων με ΚΝΜ. Η αναγνώριση των αναγκών και των πλεονεκτημάτων της υγειονομικής περίθαλψης και της αποκατάστασης στα άτομα με ΚΝΜ είναι με βεβαιότητα το πρώτο βήμα. Η συμμετοχή των ατόμων με ΚΝΜ στη διαδικασία σχεδιασμού είναι επίσης σημαντική, δεδομένου ότι είναι άμεσα επηρεαζόμενοι από τις πολιτικές αποφάσεις, και οι δικές τους απόψεις, 101
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
γνώσεις και εμπειρίες μπορούν να προσφέρουν ανεκτίμητα στοιχεία. Παρόλο που οι κυβερνήσεις είναι υπεύθυνες να διασφαλίσουν ότι οι πολιτικές και τα στρατηγικά σχέδια υποστηρίζονται καλά και υλοποιούνται, ένα ευρύ φάσμα ενδιαφερομένων -που συμπεριλαμβάνει εξειδι-
κευμένα κέντρα ΚΝΜ, νοσοκομεία, επαγγελματικές εταιρείες, πανεπιστήμια, εθνικούς και διεθνείς φορείς ανάπτυξης- μπορούν να διαδραματίσουν ένα σημαντικό ρόλο, μέσω εταιρικής σχέσης και συνεργασίας, παρέχοντας οικονομική και τεχνική υποστήριξη. Σε περίπτωση που οι χώρες έχουν περιορισμένους πόρους,
Πλαίσιο 5.1. Οργάνωση υπηρεσιών αποκατάστασης μετά τον σεισμό του Sichuan, Κίνα Τον Μάιο του 2008, ένας καταστροφικός σεισμός στην επαρχία Σιτσουάν της Κίνας, οδήγησε σε απώλεια περίπου 86.000 νεκρών ή αγνοουμένων, και άφησε πολλούς περισσότερους τραυματίες και άστεγους. Υπήρχαν περίπου 200 εισαγωγές στο νοσοκομείο λόγω τραυματισμών του νωτιαίου μυελού, κάτι που απαιτεί εντατική ιατρική διαχείριση. Μετά το σεισμό, ο Σύλλογος Ιατρικής Αποκατάστασης της Κίνας (CARM) συνεργάστηκε με τοπικούς αξιωματούχους της κυβέρνησης και με το Ίδρυμα Φροντίδας Παιδιών (μια εθνική μη κυβερνητική οργάνωση) στην οργάνωση της προσέγγισης "NHV» για τις ανάγκες αποκατάστασης των ατόμων με ΚΝΜ και με άλλες τραυματικές βλάβες που προκάλεσαν αναπηρία. Η προσέγγιση αυτή συνδύαζε τη χρηματοδότηση μη κυβερνητικών οργάνωσεων (Ν), τους πόρους από τα τμήματα υγείας της τοπική κοινωνίας (Η), και τη δέσμευση από τους εθελοντές επαγγελματίες αποκατάστασης (V) να παρέχουν μια ολοκληρωμένη ακολουθία υπηρεσιών από τα Ιδρυματικά κέντρα αποκατάστασης (IBR) μέχρι την αποκατάσταση της κοινότητας (CBR). Ο νόμος της Λαϊκής Δημοκρατίας της Κίνας για την προστασία των ατόμων με αναπηρία του 2008 (24) και η Σύμβαση για τα Δικαιώματα των ΑμεΑ (CRPD) (21) παρείχε το νομοθετικό πλαίσιο για το μοντέλο NHV. Ως αποτέλεσμα της σοβαρά διαταραγμένης υποδομής του συστήματος υγείας στην επαρχιακή πρωτεύουσα της Chengdu και των γειτονικών περιοχών καθώς και του μεγάλου αριθμού τραυματικών κακώσεων νωτιαίου μυελού ή άλλων τραυματισμών που προκαλούν αναπηρίες, ήταν η μαζική εκκένωση των νοσοκομείων από τους ιατρικά σταθεροποιημένους ασθενείς σε άλλες περιοχές της Κίνας (25). Μέσα σε μερικούς μήνες, τα κτίρια αποκαταστάθηκαν ικανοποιητικά για τους περισσότερους ανθρώπους να επιστρέψουν στα σπίτια τους και σε καταυλισμούς, ή για να μεταφερθούν σε νοσοκομεία της περιοχής Chengdu για συνεχιζόμενη ιατρική παρακολούθηση. Εν αναμονή της αποκατάστασης των ατόμων για να επιστρέψουν στην κοινότητα, ο Σύλλογος Ιατρικής Αποκατάστασης της Κίνας σε συνεργασία με τους τοπικούς κυβερνητικούς αξιωματούχους της υγείας και με το Ίδρυμα Φροντίδας Παιδιών ανέπτυξε ένα πρόγραμμα πραγματοποίησης χειρουργικής επέμβασης σε δεύτερο στάδιο ενός κατάγματος και αποκατάστασης των ατόμων με κατάγματα, κακώσεις νωτιαίου μυελού, ακρωτηριασμούς, κρανιοεγκεφαλικές κακώσεις και κακώσεις περιφερικών νεύρων. Η αξιολόγηση των αναγκών αποκατάστασης διεξήχθη με τη βοήθεια της Διεθνούς Οργάνωσης Αναπήρων (Handicap International) και του Ιδρύματος Φροντίδας Παιδιών έγινε για τον εντοπισμό ατόμων που θα ωφεληθούν από τα Ιδρυματικά Κέντρα Αποκατάστασης. Ακολουθώντας την πιλοτική εφαρμογή, η Αποκατάσταση σε Ίδρυματα πραγματοποιήθηκε σε ένα Τμήμα του νοσοκομείου στο Mianzhu County. Μετά το εξιτήριο στην κοινότητα, η έμφαση μετατοπίζεται προς την Αποκατάσταση της Κοινότητας και ιδιαίτερα σε εκείνα τα στοιχεία που έχουν σχέση με την υγεία -την προώθηση, την πρόληψη, την ιατρική περίθαλψη, την αποκατάσταση και τις βοηθητικές συσκευές. Επίσης εξετάστηκαν κι άλλα στοιχεία της Κοινοτικής Αποκατάστασης, μεταξύ των οποίων το βιοτικό επίπεδο, στοιχεία κοινωνικά και ενδυνάμωσης, μέσω της παροχής υπηρεσιών για την απασχόληση, των προσωπικών φροντιστών και την υποστήριξη ομάδας ομοπαθών. Οι άνθρωποι που τραυματίστηκαν από το σεισμό που έλαβαν "δωρεάν τροφοδοσία" ιδρυματικής Αποκατάστασης μαζί με την κάλυψη των βασικών αναγκών διαβίωσης, όπως δαπάνες για τη μεταφορά τους στο νοσοκομείο. Συνολικά, η σχέση κόστους και αποτελεσματικότητας του μοντέλου NHV διευκολύνθηκε από την παροχή ιδρυματικής αποκατάστασης σε κοντινά νοσοκομεία, σε αντίθεση με τις πιο απόμακρες επαρχιακό νοσοκομεία. Η αποτελεσματικότητα του μοντέλου NHV στην αποκατάσταση κακώσεων νωτιαίου μυελού έχει αποδειχθεί από τον Li (26), ο οποίος απέδειξε μια μέση βελτίωση 30 πόντων στο Barthel Index, ένα μέτρο των δραστηριοτήτων της καθημερινής ζωής, σε 51 θύματα του σεισμού με ΚΝΜ, οι οποίοι υποβλήθηκαν σε θεραπεία με τους όρους του μοντέλου NHV. Τις ιατρικές επιπλοκές τις διαχειρίστηκαν αποτελεσματικά στους περισσότερους ασθενείς. Επιπλέον, ο Hu (27) παρουσίασε βελτιώσεις στην αυτοαναφερόμενη ποιότητα ζωής, στη γενική υγεία, και στην ικανοποίηση των κοινωνικών σχέσεων, καθώς και στην κινητική ανεξαρτησία, σε 26 άτομα με κάκωση νωτιαίου μυελού, που είχαν πάρει εξιτήριο στην κοινότητα, σύμφωνα με το μοντέλο NHV.
102
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
μπορούν να στηριχθούν μέσω της παροχής τεχνικής βοήθειας, η οποία μπορεί να περιλαμβάνει την ανάπτυξη σχετικών κατευθυντήριων γραμμών, την οργάνωση της περιφερειακής και εθνικής ικανότητας οικοδόμησης, την εκπαίδευση με εργαστήρια, καθώς και τη βοήθεια για την ανάπτυξη των εθνικών πολιτικών σχεδίων και προγραμμάτων.
Παροχή υπηρεσιών Τα συστήματα για την παροχή υπηρεσιών υγείας και αποκατάστασης (συμπεριλαμβανομένων των υποστηρικτικών τεχνολογιών) ποικίλλουν σε όλο τον κόσμο. Όσον αφορά την προνοσοκομειακή φροντίδα, υπάρχουν πολλά διαφορετικά μοντέλα, που κυμαίνονται από προηγμένα συστήματα φροντίδας που χρησιμοποιούν σε μεγάλο βαθμό εξειδικευμένο ιατρικό προσωπικό μέχρι συστήματα εθελοντικής προσφοράς που είναι κοινά σε περιοχές όπου υπάρχουν λίγοι πόροι. Ανεξάρτητα από το τι σύστημα είναι σε ισχύ είναι απαραίτητο η προνοσοκομειακή περίθαλψη να είναι ενσωματωμένη στο υπάρχον σύστημα υγείας (28). Οι ιατρικές υπηρεσίες οξείας και μετάοξεία φάσης στα άτομα με ΚΝΜ συνήθως παρέχονται μέσω ενδονοσοκομειακών δομών, όπως τα κέντρα τραύματος, τα γενικά νοσοκομεία και οι εξειδικευμένες μονάδες ή κέντρα ΚΝΜ, ενώ υπηρεσίες αποκατάστασης μπορούν να παρέχονται και μέσω της νοσηλείας, των εξωτερικών ιατρείων ή / και των προγραμμάτων της κοινότητας. Στις χώρες υψηλού εισοδήματος, εξειδικευμένα και ολοκληρωμένα συστήματα περίθαλψης για την ΚΝΜ είναι συνήθως η προτιμώμενη επιλογή – π.χ. οι υπηρεσίες που παρέχονται "κάτω από την ίδια στέγη" ή υπάρχει ένα οργανωμένο σύστημα που επιτρέπει την άψογη μετάβαση μεταξύ του κάθε σταδίου φροντίδας, όπως αναλύεται στο κεφάλαιο 4. Μια πολιτική διακήρυξη που κυκλοφόρησε από την Ευρωπαϊκή Ένωση Κακώσεων Νωτιαίου Μυελού (ESCIF) τάσσεται υπέρ της συγκεντρωτικής θεραπείας, της αποκατάστασης και της δια βίου φροντίδας των ατόμων με κάκωση νωτιαίου μυελού, καθώς και της ανάπτυξης ειδικών κέντρων που είναι σε θέση να διαχειρίζονται όλες τις πτυχές της φροντίδας του ατόμου (29). Πρώιμη παρέμβαση μέσω εξειδικευμένων κέντρων ή ομάδων ειδικού ενδιαφέροντος εντός των
γενικών νοσοκομείων έχει αναφερθεί ότι οδηγούν σε καλύτερα αποτελέσματα των ανθρώπων με ΚΝΜ (2). Η μικρότερη διάρκεια νοσηλείας σε έναν ειδικό κέντρο /μονάδα ή η επίβλεψη από μια εξειδικευμένη ομάδα έχει αποδειχθεί ότι μειώνουν το κόστος, οδηγούν σε λιγότερες επιπλοκές, και έχουν ως αποτέλεσμα λιγότερες επαναλαμβανόμενες νοσηλείες μετά το εξιτήριο, σε σύγκριση με εναλλακτικές ή μη εξειδικευμένες υπηρεσίες (2, 30-42). Μια μελέτη σε εννέα χώρες σε όλο τον κόσμο, που συμπεριελάμβανε και δύο αναπτυσσόμενες χώρες, διαπίστωσε ότι οι μονάδες ΚΝΜ συνήθως καθοδηγούνται από έναν ιατρό εκπαιδευμένο στη φυσική ιατρική και αποκατάσταση (43). Υπηρεσίες που χρειάζονταν κατά τη φάση της αποκατάστασης περιελάμβαναν φυσικοθεραπεία, εργοθεραπεία, συμβουλευτική, παροχή υποστηρικτικής τεχνολογίας, αναγνώριση των δικαιωμάτων, καθώς και ψυχολογική και ψυχοσεξουαλική υποστήριξη. Οι ασθενείς είχαν θεραπεία 2-5 ώρες την ημέρα, συνήθως πέντε ημέρες την εβδομάδα, αν και υπήρχαν σημαντικές διαφορές στο χρόνο της θεραπείας και τη διάρκεια νοσηλείας (43, 44). Η παροχή υποστηρικτικής τεχνολογίας περιλαμβάνει το σχεδιασμό, την παραγωγή και τη διανομή των προϊόντων, και την παροχή των σχετικών υπηρεσιών, όπως η αξιολόγηση, η τοποθέτηση και κατάρτιση (45). Ανάλογα με το μοντέλο της παροχής υπηρεσιών, τα άτομα με ΚΝΜ μπορούν να αποκτήσουν την υποστηρικτική τεχνολογία μέσω ενός ευρέως φάσματος διαφορετικών φορέων, συμπεριλαμβανομένων τις υπηρεσίες του κράτους, τους διεθνείς οργανισμούς, τις μη κυβερνητικές οργανώσεις, τον ιδιωτικό τομέα ή ένας συνδυασμός αυτών (δημοσίου και ιδιωτικού τομέα). Όπου οι κυβερνητικοί πόροι είναι περιορισμένοι, άλλοι ενδιαφερόμενοι φορείς μπορούν να διαδραματίσουν σπουδαιότερο ρόλο στην παροχή υποστηρικτικής τεχνολογίας. Εθνικές μελέτες σε πέντε Αφρικανικές χώρες για τις συνθήκες διαβίωσης των ατόμων με αναπηρίες, έδειξε ότι η πλειοψηφία των βοηθητικών συσκευών παρέχονται από πηγές εκτός της κυβέρνησης, αν και σε ορισμένες χώρες, π.χ. στην Ναμίμπια, αυτή η ομάδα είχε πολύ υψηλότερη αναλογία παροχών υποστηρικτι κής τεχνολογίας από κυβερνητικές οργανώσεις παρά από άλλες (βλέπε Πίνακα 5.1) Τα άτομα με κάκωση νωτιαίου μυελού, σε συνερ103
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
γασία με τα μέλη της οικογένειας τους, θα πρέπει επίσης να ενδυναμωθούν στη διαχείριση της κύστης και του εντέρου και σε δεξιότητες όπως η μεταφορά, οι ικανότητες του αμαξιδίου και η προσωπική φροντίδα. Επαγγελματική αποκατάσταση, αθλητικές και πολιτιστικές δραστηριότητες μπορεί να ακολουθήσουν.
σιμες, όπως επίσης και οι διαγνωστικές εξετάσεις και ο εξειδικευμένος εξοπλισμός (47). Λόγω της χαμηλής συχνότητας της ΚΝΜ, είναι πολύ δύσκολο να δημιουργηθούν βιώσιμες εξειδι κευμένες υπηρεσίες υγειονομικής περίθαλψης σε αγροτικές και απομακρυσμένες περιοχές (47).
Εμπόδια Τα άτομα με ΚΝΜ αντιμετωπίζουν συχνά εμπόδια στη διατήρηση υγιούς τρόπου ζωής και στην πρόσβαση σε υπηρεσίες υγειονομικής περίθαλψης. Μερικά από αυτά τα εμπόδια περιγράφονται παρακάτω. Διαθεσιμότητα Λαμβάνοντας υπόψη τις πολλαπλές ανάγκες υγειονομικής περίθαλψης των ανθρώπων με ΚΝΜ, ένα ολοκληρωμένο φάσμα υπηρεσιών είναι απαραίτητο. Η παροχή των υπηρεσιών μέσω εξειδικευμένων κέντρων, ενώ προτιμάται για τους ανθρώπους με ΚΝΜ, απαιτεί σημαντικούς επενδυτικούς πόρους, και τέτοιου είδους υγειονομικής περίθαλψης και υπηρεσίες αποκατάστασης είναι συχνά συγκεντρωμένες σε έναν τόπο με περιορισμένη διαθεσιμότητα σε αγροτικές και απομακρυσμένες περιοχές (2). Μια μελέτη διερεύνησης παραγόντων που επηρεάζουν τη χρήση της υγειονομικής περίθαλψης από το πρώην στρατιωτικό προσωπικό με ΚΝΜ στις ΗΠΑ, διαπίστωσε ότι η απόσταση από τις γενικές υπηρεσίες υγείας είχαν αντίκτυπο στην χρήση τους - δηλαδή όσοι ζούσαν μακριά από ενδονοσοκομειακές και εξωνοσοκομειακές υπηρεσίες, τις χρησιμοποιούσαν πολύ λιγότερο (46). Μια μελέτη που πραγματοποιήθηκε σε αγροτικές και απομακρυσμένες περιοχές της Αυστραλίας, διαπίστωσε ότι οι εξειδικευμένες υπηρεσίες, όπως η διαχείριση του πόνου και τα αναπηρικά αμαξιδία, ήταν συνήθως δύσκολα προσβάΠίνακας 5.1. Χώρα Μαλάουι Μοζαμπίκουε Ναμίμπια Ζάμπια Ζιμπάμπουε
Προσβασιμότητα Τα άτομα με αναπηρίες αναφέρουν συχνά δυσκολία στην πρόσβασή τους σε υπηρεσίες υγειονομικής περίθαλψης. Η έλλειψη προσβάσιμου και κατάλληλου εξοπλισμού μπορεί να προκαλέσει την παραίτηση ιατρών και άλλων επαγγελματιών υγείας, την παράληψη ή την αποτυχία να θεωρούνται σωστές οι διαδικασίες για τα άτομα με αναπηρίες (ενώ σε άλλη περίπτωση είναι ρουτίνα) (2). Μια έρευνα ιατρών στις ΗΠΑ αποκάλυψαν ότι, παρόλο που γνώριζαν κάποια φυσικά εμπόδια στα γραφεία τους, συνέχισαν να χρησιμοποιούν μη προσβάσιμο εξοπλισμό (48). Τα συστήματα για την παροχή υπηρεσιών υγείας και αποκατάστασης (συμπεριλαμβανομένων των υποστηρικτικών τεχνολογιών) είναι δύσκολο να τα διαπραγματευτούν για τα άτομα με ειδικές ανάγκες και τα μέλη των οικογενειών: οι περίπλοκες διαδικασίες και ο κατακερματισμός των υπηρεσιών έχουν βρεθεί να είναι σημαντικά εμπόδια για την ικανοποίηση των αναγκών (5). Σπάνια υπάρχει "μιας στάσης κατάστημα" για να στηριχθεί η πρόσβαση στην υποστηρικτική τεχνολογία, και να υπάρχουν συχνά ανταγωνιστικά συμφέροντα μεταξύ των σχεδιαστών, των κατασκευαστών, των προμηθευτών, των εφαρμοστών και των πηγών χρηματοδότησης. Σε ορισμένες χώρες οι υπηρεσίες υποστηρικτικής τεχνολογίας μπορεί να είναι χωριστά από τις υπηρεσίες υγείας, καθιστώντας δύσκολο τον συντονισμό τους. Σε μια
Παροχή υποστηρικτικής τεχνολογίας από τους ενδιαφερόμενους φορείς Κυβερνητικοί φορείς 19% 47% 60% 14% 28%
Μη κυβερνητικοί φορείς 9% 4% 3% 9% 8%
Ιδιωτικοί φορείς 34% 36% 30% 44% 31%
Άλλες πηγές 38% 13% 7% 33% 33%
Πηγές (11-15)
104
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
προαναφερόμενη μελέτη καταναλωτών που οι καθυστερήσεις της παροχής υπηρεσιών, ο αριθμός των οργανώσεων και των υπαλλήλων συμπεριλήφθηκαν, και η κακή αντιμετώπιση των επαγγελματιών συνεισέφεραν ως παράγοντες για να μείνουν ανεκπλήρωτες οι ανάγκες τους για υποστηρικτική τεχνολογία (20).
Αποδοχή Σε πολλές περιπτώσεις οι άνθρωποι με ΚΝΜ αναφέρουν ότι τα προγράμματα αποκατάστασης δεν καλύπτουν τις ανάγκες τους - δηλαδή είναι τυποποιημένα και δεν είναι προσαρμοσμένα στις ατομικές τους ανάγκες (17). Για παράδειγμα, η υποστηρικτική τεχνολογία είναι συχνά "συνταγογραφήσιμο" χωρίς να λαμβάνονται υπόψη οι ατομικές απαιτήσεις των χρηστών και το περιβάλλον διαβίωσης τους. Απόψεις όπως, "το κάτι, είναι καλύτερο από το τίποτα» και "ένα μέγεθος ταιριάζει σε όλους" ακούγονται συχνά, όπου οι πόροι είναι περιορισμένοι (49-51). Ανεπαρκής εκτίμηση των αναγκών των χρηστών μπορεί να έχει ως αποτέλεσμα τα άτομα να λαμβάνουν ακατάλληλο εξοπλισμό (52), και ως εκ τούτου να έχουν αρνητικές συνέπειες. Για παράδειγμα, όταν το αναπηρικό αμαξίδιο δεν είναι προσαρμοσμένο στις ατομικές ανάγκες, υπάρχει κίνδυνος στα άτομα με ΚΝΜ, δευτερογενών επιπλοκών, όπως είναι τα έλκη πιέσεως, οι επαναλαμβανόμενοι τραυματισμοί λόγω καταπόνησης και οι τραυματισμοί του ώμου (53, 54). Οι άνθρωποι με ΚΝΜ συχνά έχουν περιορισμένη πρόσβαση σε πληροφορίες και υποστηρικτικά μέσα που απαιτούνται για να πάρουν σωστές αποφάσεις σε σχέση με την υγεία και την αποκατάσταση τους. Τα άτομα μπορεί να είναι ιδιαίτερα ευάλωτα κατά τα πρώτα στάδια της κάκωσής τους, καθώς η έλλειψη εμπειρίας και γνώσεων μπορεί να περιορίσουν το πεδίο των αναγκών τους (55). Μειωμένη συμμετοχή του χρήστη μπορεί να εξηγήσει, γιατί ένας μεγάλος αριθμός αναπηρικών αμαξιδίων που παρέχονται στις χώρες χαμηλού και μεσαίου εισοδήματος χώρες, ή δεν είναι κατάλληλα για τους χρήστες στο περιβάλλον τους (56, 57) ή εγκαταλείπονται (55). Η αντιμετώπιση των εμποδίων Ο συντονισμός των υπηρεσιών Καθώς πολλοί ενδιαφερόμενοι φορείς συμμετέχουν στην παροχή υπηρεσιών στα άτομα με ΚΝΜ, η συστη-
ματική και ενιαία προσέγγιση παροχών είναι ζωτικής σημασίας. Ανεξάρτητα από το ποιο είδος μοντέλου παροχής υπηρεσιών είναι σε ισχύ, οι υπηρεσίες θα πρέπει να συντονίζονται για να εξασφαλιστεί η ομαλή μετάβαση μεταξύ των διαφορετικών σταδίων και προγραμμάτων φροντίδας (39, 58). Ο συντονισμός φροντίδας προωθεί μια προσέγγιση συνεργασίας από μια διεπιστημονική ομάδα για την παροχή υπηρεσιών, που να συνδέει τους ανθρώπους με ΚΝΜ με τις κατάλληλες υπηρεσίες και πηγές, καθώς και να διασφαλίζει μια πιο αποτελεσματική και δίκαιη κατανομής των πόρων (2). Αυτό περιλαμβάνει την αναγνώριση του συντονιστή φροντίδας, την ανάπτυξη ενός εξατομικευμένου πλάνου φροντίδας, καθώς και την παροχή κατάλληλης παραπομπής και αποτελεσματικής ενημέρωσης για τη μετακίνησή του σε άλλες υπηρεσίες (2). Μια μελέτη στην οποία συμμετείχαν η Σουηδία και η Ελλάδα σύγκρινε παρόμοιες ομάδες ατόμων με ΚΝΜ και κατέληξε στο συμπέρασμα ότι καλύτερα αποτελέσματα με λιγότερες επιπλοκές επιτεύχθηκαν, όταν υπήρχε μια προκαθορισμένη διαδικασία διαχείρισης του προσώπου κατά το πρώτο έτος μετά την τραυματική ΚΝΜ (59).
Η χρήση εναλλακτικών και συμπληρωματικών μοντέλων για την παροχή υπηρεσιών Όταν συγκεκριμένες εξειδικευμένες υπηρεσίες για τους ανθρώπους με ΚΝΜ δεν είναι δυνατό να επιτευχθούν, άλλα μοντέλα παροχής υπηρεσιών μπορεί να θεωρηθούν ότι ανταποκρίνονται στις ανάγκες τους. Μερικά εναλλακτικά μοντέλα περιγράφονται παρακάτω. Αυτό που θα πρέπει να τονιστεί είναι ότι αυτά δεν είναι αυτόνομα μοντέλα. Θα πρέπει να αποτελούν μέρος ενός συντονισμένου συστήματος υγείας. Μικρότερες ειδικές μονάδες ή ομάδες Μονάδες ή ομάδες ΚΝΜ μπορούν να συσταθούν στα πλαίσια των γενικών νοσοκομείων. Για παράδειγμα, μια ειδική ομάδα ΚΝΜ στη Βραζιλία και μια μικρή μονάδα στο Αφγανιστάν ιδρύθηκε μέσα σε Νοσοκομεία Χειρουργικά και σε Ορθοπεδικά κέντρα και υποστηρίχτηκαν στη συνέχεια από ένα πρόγραμμα φροντίδας κατ’οίκον (2, 60). Στο Βιετνάμ, το Εθνικό Κέντρο Αποκατάστασης συνεργάζεται με την Διεθνή Οργάνωση Αναπήρων σε ένα πρόγραμμα για την αποκέντρωση των υπηρεσιών στις ΚΝΜ, με τη θέσπιση εξειδικευμένων μονάδων σε ήδη υπάρχοντα κέντρα αποκατάστασης. 105
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Ειδική υποστήριξη για την ενσωμάτωση των υπηρεσιών υγείας Κινητές συμβουλευτικές ομάδες έχουν προταθεί ως τρόπος στήριξης των ατόμων με ΚΝΜ σε νοσοκομεία πρώτης γραμμής που δεν έχουν ειδική μονάδα ΚΝΜ (38). Αυτές οι ομάδες μπορούν να βοηθήσουν στην πρόληψη και την αντιμετώπιση των επιπλοκών που σχετίζονται με ΚΝΜ, να συμβουλεύσουν έγκαιρα και να παραπέμψουν σε υπηρεσίες αποκατάστασης, να βοηθήσουν στο σχεδιασμό εξιτηρίου και να εκπαιδεύσουν το προσωπικό του νοσοκομείου. Τα κέντρα ΚΝΜ θα μπορούσαν να έχουν ένα ρόλο συμβουλευτικό και εκπαιδευτικό για την ενίσχυση των δυνατοτήτων της πρωτοβάθμιας φροντίδας υγείας καθώς και των κοινωνικών υπηρεσιών για την παρακολούθηση θεμάτων που αφορούν τα άτομα με ΚΝΜ που ζουν στην κοινότητα (5). Μοντέλα προσέγγισης Τα μοντέλα προσέγγισης επιτρέπουν στα άτομα με κάκωση νωτιαίου μυελού να διατηρούν επαφή με εξειδικευμένους παρόχους υγείας από τριτοβάθμια κέντρα μετά την έξοδο τους. Σε αυτά τα μοντέλα, οι ίδιες υπηρεσίες παρέχονται πιο κοντά στον τόπο όπου ζουν οι άνθρωποι, ξεπερνώντας έτσι τα εμπόδια της απόστασης και του κόστους μεταφοράς. Εξωτερικά ιατρεία και επισκέψεις κατ’οίκον μαζί με το "Φτερωτές/Κινητές Κλινικές" (βλέπε Πλαίσιο 5.2.) είναι παραδείγματα των μοντέλων προσέγγισης που μπορούν να παρέχουν πρόσβαση σε εξειδικευμένες υπηρεσίες υγείας και αποκατάστασης στα άτομα με ΚΝΜ που διαβιούν σε αγροτικές και απομακρυσμένες κοινότητες. Αυτά τα μοντέλα αναγνωρίζονται και υποστηρίζονται από ανθρώπους με ΚΝΜ ως εναλλακτικές μορφές παροχής υπηρεσιών (5). Τηλεϊατρική / τηλεαποκατάσταση Η τεχνολογία πληροφοριών και επικοινωνίας έχει χρησιμοποιηθεί για να παρέχει συνεχή υποστήριξη στα άτομα με κάκωση νωτιαίου μυελού (61, 62). Τηλεσυμβουλευτική και καθοδήγηση μέσω διαδικτύου για την ιατρική περίθαλψη και αποκατάσταση έχει χρησιμοποιηθεί για την αντιμετώπιση συγκεκριμένων επιπλοκών της ΚΝΜ, όπως η φροντίδα μιας πληγής, με προτάσεις ότι μπορεί να είναι κατάλληλο μοντέλο παροχής υπηρεσιών και σε άλλους τομείς, όπως στη διαχείριση της κύστης (63). Η χρήση των τηλεπικοινωνιών είναι επίσης μια πιθανή λύση για την 106
παροχή υπηρεσιών υποστηρικτικής τεχνολογίας σε αγροτικές και απομακρυσμένες περιοχές (64). Αποκατάσταση κοινότητας (CBR) Η Κοινοτική Αποκατάσταση είναι μια ευρεία στρατηγική ανάπτυξης που έχει εφαρμοστεί σήμερα σε περισσότερες από 90 χώρες σε όλο τον κόσμο. Υπάρχει η δυνατότητα να επιτευχθεί πρόσβαση στην υγειονομική περίθαλψη, την αποκατάσταση και την υποστηρικτική τεχνολογία των ατόμων με ειδικές ανάγκες που ζουν σε κοινότητες με λίγους πόρους (65). Έρευνα από την Ουγκάντα βρήκε ότι, ενώ η θνησιμότητα των παιδιών κάτω των πέντε ετών με δισχιδή ράχη συχνά προσεγγίζει το 50%, περιοχές με προγράμματα Κοινοτικής Αποκατάστασης είχαν ένα ποσοστό θνησιμότητας 16%, που προσεγγίζει εκείνη των μηανάπηρων παιδιών. Τα ποσοστά επιβίωσης συνδέονται με την γονεϊκή συμπεριφορά, η οποία μπορεί να ενισχύεται και να ενθαρρύνεται με επισκέψεις από τους εργαζόμενους της Κοινοτικής Αποκατάστασης (66). Η ανάπτυξη εταιρικών σχέσεων μεταξύ των υφιστάμενων εξειδικευμένων υπηρεσιών και των προγραμμάτων Αποκατάστασης στην Κοινότητα, παρέχει μια ευκαιρία για τη συνεχιζόμενη και συντονισμένη φροντίδα των ατόμων με ΚΝΜ. Με την κατάλληλη εκπαίδευση και επίβλεψη, οι εργαζόμενοι σε αυτά τα προγράμματα έχουν αποδείξει σε πολλές καταστάσεις ότι είναι σε θέση να παρέχουν συνεχή στήριξη στα άτομα με ΚΝΜ. Πολλά προγράμματα Κοινοτικής Αποκατάστασης έχουν στηρίξει επίσης άτομα με κάκωση νωτιαίου μυελού μέσω πρωτοβουλιών στήριξης από ομοιοπαθείς πάσχοντες, όπως ομάδες αυτοβοήθειας (67).
Υιοθετώντας προσεγγίσεις με γνώμονα το άτομο Απαιτείται προσέγγιση συνεργασίας, στην οποία τα άτομα με ΚΝΜ (και τα μέλη των οικογενειών τους, όπου είναι κατάλληλα και ικανά) να είναι σε θέση να συμβάλουν στο σχεδιασμό και στη λήψη αποφάσεων (55, 68). Μια μεταανάλυση ποιοτικής έρευνας που εξετάζει τις εμπειρίες των ανθρώπων της αποκατάστασης μετά από κάκωση νωτιαίου μυελού, τόνισε ότι αισθάνθηκαν να τους εκτιμούν και να τους σέβονται οι εργαζόμενοι υγειονομικής περίθαλψης όταν: (i) τους αντιμετώπιζαν ως συνεργάτες σε όλη τη διαδικασία αποκατάστασης, (ii) είχαν μια άμεση και ανοιχτή γραμμή επικοινωνίας, (iii) μοιράζονταν από κοινού
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
Πλαίσιο 5.2. "Ιπτάμενες κλινικές" στις Ανατολικές αυτόχθονες κοινότητες της Arnhem στην Αυστραλία Η παροχή συνεχούς πρόσβασης στην υγειονομική περίθαλψη και στις υπηρεσίες αποκατάστασης στους ανθρώπους με Κακώσεις Νωτιαίου Μυελού σε αγροτικές και απομακρυσμένες περιοχές της Αυστραλίας παρουσιάζει μια σημαντική πρόκληση. Στη Βόρεια Επικράτεια της Αυστραλίας, πολλοί ιθαγενείς που έχουν κάποια κάκωση του νωτιαίου μυελού δεν είναι ικανοί να επιστρέψουν στις κοινότητές τους, λόγω των ανεπαρκών υπηρεσιών υγειονομικής περίθαλψης και υποστήριξης. Σοβαρός τραυματισμός του νωτιαίου μυελού και σοβαρές μη-τραυματικές βλάβες αντιμετωπίζονται σε μία από τις σημαντικότερες μονάδες ΚΝΜ στο νότιο τμήμα της χώρας - συνήθως από την Υπηρεσία Τραυματισμών Νωτιαίου Μυελού της Νότιας Αυστραλίας (SASCIS) στην Αδελαΐδα. Ιατρική περίθαλψη και αποκατάσταση στους ανθρώπους που έχουν λιγότερο σοβαρές βλάβες νωτιαίου μυελού, παρέχονται μέσω ρώπων που ζουν στη Βόρεια Επικράτεια. Για τους αυτόχθονες πληθυσμοί που ζουν σε περιοχές όπως η Ανατολική χώρα της Arnhem, το να συμμετέχουν σε αυτές τις κλινικές είναι συνήθως δύσκολο, καθώς ζουν σε κοινότητες στα νησιά ή σε απομακρυσμένες περιοχές, από τις οποίες χρειάζεται ένα μακρύ ταξίδι μέσω δασικών περιοχών για να φτάσουν στις μεγάλες πόλεις. Στοχευμένα προγράμματα απαιτούνται για την αντιμετώπιση των αναγκών των ατόμων με ΚΝΜ, που ζουν σε απομονωμένες κοινότητες στη βόρεια Αυστραλία. Το 1994, το Σύστημα Ασφάλισης Αυτοκινηστικού ατυχήματος στην Επικράτεια χρηματοδότησε έναν ιατρό Αποκατάσταση εξειδικευμένο σε ΚΝΜ από την Αδελαΐδα και μια εξειδικευμένη στο νωτιαίο μυελό νοσοκόμα από τη Βόρεια Επικράτεια για να επισκεφθούν δύο κοινότητες στην Ανατολική χώρα της Arnhem (Yirrkala και Gapuwiyak). Με την πάροδο του χρόνου, ο αριθμός των κοινοτήτων που επισκέφθηκαν και οι άνθρωποι φἀνηκαν να έχουν αυξηθεί, με περισσότερους από 12 πελάτες και επτά κοινότητες ανά επίσκεψη. Από το 2002, ένας ακόμη επαγγελματίας υγείας (εργοθεραπευτής, φυσικοθεραπευτής ή / και υπάλληλος αποκατάστασης του τοπικού συνδέσμου), συνοδεύει επίσης το γιατρό και τη νοσοκόμα, και η χρηματοδότηση έχει δοθεί από την υπηρεσία Αποκατάστασης RDHRS του Βασιλικού Δαρβίνειου Νοσοκομείου (RDHRS) και από την Περιφερειακή Υγειονομική Υπηρεσία. Όπου είναι δυνατόν, η ομάδα προσέγγισης του νωτιαίου μυελού κάνει διαβουλεύσεις με τα μέλη της αγροτικής και απομακρυσμένης, συμμαχικής ομάδας Υγείας, τα οποία μπορεί να εμπλέκονται με μεμονωμένους πελάτες, καθώς και με το κοινοτικό προσωπικό υγείας, όπως ιατροί, νοσηλευτές και εργαζόμενοι στην υγεία της τοπικής κοινωνίας. Όταν δεν γίνεται μια κοινοτική επίσκεψη, η ομάδα προσέγγισης του νωτιαίου μυελού είναι προσβάσιμη μέσω τηλεφώνου, φαξ και e-mail. Οι δαπάνες περιλαμβάνουν τις εμπορικές πτήσεις μεταξύ Darwin και Gove, διανυκτέρευση σε ένα μοτέλ ή φιλοξενία σε σπίτι της κονότητας και πτήσεις με την τοπική γρήγορη αεροπορική εταιρεία. Οι δαπάνες συγκρίνονται ευνοϊκά με την εναλλακτική λύση, η οποία είναι για να φέρει το κάθε άτομο και τους καθορισμένους φροντιστές στο Νταργουιν για τουλάχιστον δύο διανυκτερεύσεις. Εκτός από τα οικονομικά οφέλη στο σύστημα υγείας, υπάρχουν και άλλα οφέλη για τα άτομα με ΚΝΜ, τα μέλη των οικογενειών τους και τους εργαζόμενους του τομέα της υγείας. Αυτά περιλαμβάνουν την ανάπτυξη μιας σχέσης εμπιστοσύνης μεταξύ του ατόμου με ΚΝΜ, των μελών της οικογένειας και της εξειδικευμένης ομάδας ΚΝΜ, καθώς και την ικανότητα να παρέχει ευκαιριακή (και προγραμματισμένη) εκπαίδευση στο άτομο με ΚΝΜ, στα μέλη της οικογένειας, στους ιθαγενείς εργαζόμενους στο χώρο της υγείας και στο απομακρυσμένο νοσηλευτικό και ιατρικό προσωπικό. Η περιφερειακή ομάδα κερδίζει επίσης τη γνώση πάνω στις δυσκολίες και τις ανάγκες των ατόμων με ΚΝΜ που ζουν σε απομακρυσμένες κοινότητες και στις τοπικές λύσεις σε προβλήματα, που μπορούν να επωφεληθούν και άλλες κοινότητες.
πληροφορίες, και (iv) τους υπολόγιζαν στην επίλυση των προβλημάτων και στη λήψη αποφάσεων (17). Οι προσεγγίσεις αυτοδιαχείρισης είναι σημαντικές για να διασφαλιστεί ότι τα άτομα με ΚΝΜ είναι σε θέση να διατηρήσουν την υγεία τους μακροπρόθεσμα (54). Περιορισμοί εντός των συστημάτων υγειονομικής περίθαλψης απαιτούν να τονιστεί περαιτέρω η σημασία αυτών των προσεγγίσεων. Οι άνθρωποι με ΚΝΜ έχουν επισημάνει ότι το έντερο, η ουροδόχος κύστη και η φροντίδα του δέρματος είναι κάποια από τα πιο σημαντικά ζητήματα, για τα οποία απαιτείται εκπαίδευση στην αυτοεξυπηρέτηση και στην αυτοδιαχείριση (54). Εκτός από την κατάρτιση και την εκπαί-
δευση που παρέχεται από το προσωπικό υγείας και αποκατάστασης, υπάρχουν διάφοροι τρόποι, με τους οποίους οι άνθρωποι με ΚΝΜ μπορούν να αποκτήσουν γνώσεις και δεξιότητες. Το Διαδίκτυο μπορεί να είναι μία καλή πηγή πληροφοριών και δίδει τη δυνατότητα στους ανθρώπους με κάκωση νωτιαίου μυελού, να μάθουν για την κατάστασή τους και να χειραφετηθούν για να παίξουν ένα ενεργό ρόλο στη φροντίδα της υγείας και της αποκατάστασης τους. Για παράδειγμα, η Spinal Trust της Νέας Ζηλανδίας ανέπτυξε "Τα βασικά στοιχεία της σπονδυλικής στήλης", ένα online διαδραστικό μάθημα, σχεδιασμένο για να εκπαιδεύσει τους ανθρώπους με κάκωση νωτιαίου μυελού στην 107
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
ανατομία της σπονδυλικής στήλης, στους ιατρικούς όρους που συνδέονται με την κἀκωση και στα θέματα που ενδέχεται να αντιμετωπίσουν (69). Η έρευνα έχει δείξει ότι τα άτομα με ΚΝΜ αξιολογούν τα στοιχεία από τους ομοιοπαθείς (peer: ομότιμοι), είτε σε ανεπίσημη βάση, όπως το να συναντιούνται με άλλους ασθενείς κατά τη διάρκεια της εισαγωγής τους στο νοσοκομείο ή σε μια πιο επίσημη βάση, μέσω καθοδήγησης από ομότιμους πάσχοντες, αμοιβαίας υποστήριξης και προγραμμάτων κατάρτισης από ομότιμους (17, 70). Τα προγράμματα από ομότιμους έχουν τη δυνατότητα να βελτιώσουν την πορεία των ατόμων με κάκωση νωτιαίου μυελού και των μελών της οικογένειάς τους. Για παράδειγμα, μια συγκριτική μελέτη ενός προγράμματος καθοδήγησης από ομότιμους στις ΗΠΑ έδειξε ότι παρουσίαζαν μειωμένη τάση σε ιατρικές επιπλοκές, μετά την ολοκλήρωση του προγράμματος ομότιμης καθοδήγησης (71). Ομότιμοι καθοδηγητές έχουν ένα κοινό χαρακτηριστικό (την κάκωση) και παρέχουν την απαιτούμενη στήριξη και βοήθεια μέσω ανταλλαγής εμπειριών, γνώσεων και δεξιοτήτων. Οι ομότιμοι καθοδηγητές μπορεί να χρησιμοποιηθούν για: να οικοδομήσουν αίσθημα εμπιστοσύνης στα άτομα που έχουν υποστεί πρόσφατα μια ΚΝΜ, να αντιμετωπίσουν θέματα που σχετίζονται με την ψυχοκοινωνική προσαρμογή, να παρέχουν κατάρτιση και εκπαίδευση για την προσωπική φροντίδα και την κινητικότητα, να δίδουν πληροφορίες και συμβουλές σχετικά με τις στρατηγικές διατήρησης της υγείας και την πρόληψη των δευτερογενών συνθήκων, όπως τα έλκη πίεσης και οι λοιμώξεις του ουροποιητικού συστήματος και να προκαλέσουν την παραπομπή σε υπηρεσίες υγείας, όπου αυτό απαιτείται. Η εκπαίδευση που βασίζεται και γίνεται από ομότιμα άτομα (άλλα άτομα με ΚΝΜ) μπορεί να ενσωματωθεί σε διάφορα στάδια της υγειονομικής περίθαλψης και αποκατάστασης και να χρησιμοποιηθεί σε πολλές διαφορετικές καταστάσεις. Οι μη κυβερνητικές οργανώσεις, οι οργανώσεις των ατόμων με αναπηρία και τα προγράμματα Κοινοτικής Αποκατάστασης έχουν χρησιμοποιήσει με επιτυχία αυτού του είδους την εκπαίδευση σε χώρες με χαμηλό εισόδημα. Οργανισμοί όπως το "Κίνητρο" τρέχει ένα πρόγραμμα ομότιμης εκπαίδευσης για τους χρήστες αναπηρικών αμαξιδίων 108
σε χώρες, όπως το Μαλάουι, τη Μοζαμβίκη, τη Ρουμανία και τη Σρι Λάνκα. Ομάδες για ενήλικες και για παιδιά προωθούν τις δεξιότητες στο αμαξίδιο, την υγεία και την ευαισθητοποίηση στα δικαιώματα της αναπηρίας (72).
Βελτιώνοντας τη φυσική πρόσβαση σε εγκαταστάσεις υγείας Η Σύμβαση για τα Δικαιώματα των ΑμεΑ (CRPD) (21) ορίζει τις απαιτούμενες διευκολύνσεις ως "απαραίτητες και κατάλληλες τροποποιήσεις και προσαρμογές που δεν επιβάλλουν δυσανάλογη ή υπερβολική επιβάρυνση, όταν αυτές χρειάζονται σε μια συγκεκριμένη περίπτωση, για να εξασφαλιστεί ότι τα άτομα με ειδικές ανάγκες απολαμβάνουν ή εξασκούν, σε ισότιμη βάση με τους άλλους, όλα τα ανθρώπινα δικαιώματα τους και τις θεμελιώδεις ελευθερίες τους". Οι εύλογες διευκολύνσεις, όπως ευρείες αυτόματες πόρτες, μεγάλα δωμάτια εξέτασης, ρυθμιζόμενες καθ 'ύψος εξεταστικές κλίνες, προσβάσιμες σκάλες με τα αναπηρικά αμαξίδια και γραφεία υποδοχής σε χαμηλό ύψος, θα μπορούσαν να βελτιώσουν τη φυσική πρόσβαση των ατόμων με ΚΝΜ σε υπηρεσίες υγειονομικής περίθαλψης.
Ανθρώπινοι πόροι Οι άνθρωποι με ΚΝΜ απαιτούν πρόσβαση σε ένα ευρύ φάσμα εξειδικευμένου προσωπικού που είναι σε θέση να παρέχει, τόσο γενικές όσο και πιο εξειδικευμένες υπηρεσίες περίθαλψης και αποκατάστασης. Αυτό το προσωπικό αποτελείται από ιατρούς (π.χ. ιατρούς επειγόντων, γενικούςιατρούς, νευρολόγους, ιατρούς αποκατάστασης/φυσικοθεραπευτές, χειρουργούς, ουρολόγους), νοσηλευτές, παραϊατρικό προσωπικό, οδοντοτεχνίτες και ορθοτίστες, ψυχολόγους, μηχανικούς αποκατάστασης, θεραπευτές (εργοθεραπευτές, φυσικοθεραπευτές, λογοθεραπευτές), κοινωνικούς λειτουργούς και μια ποικιλία από προσωπικό υποστήριξης, συμπεριλαμβανομένων του εξειδικευμένου προσωπικού στην κοινότητα υγείας και αποκατάστασης.
Εμπόδια Οι πληροφορίες για να επιτρέψουν ένα κατάλληλο σχολιασμό των παγκόσμιων προκλήσεων που σχετί-
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
ζονται με το ανθρώπινο δυναμικό στον τομέα της υγείας και των κακώσεων του νωτιαίου μυελού είναι ανεπαρκείς. Ωστόσο, παγκόσμιες ελλείψεις των ανθρωπίνων πόρων στην υγεία και στην αποκατάσταση, ιδιαίτερα στις χώρες χαμηλού και μεσαίου εισοδήματος και στις αγροτικές και απομακρυσμένες περιοχές (2, 65, 73, 74), υποδηλώνουν ότι ο αριθμός του προσωπικού, που εκπαιδεύεται στην ΚΝΜ είναι ανεπαρκής για να εξασφαλιστεί ότι τα άτομα με ΚΝΜ μπορούν να έχουν πρόσβαση στην περίθαλψη που χρειάζονται. Υπάρχουν λίγα επίσημα προγράμματα κατάρτισης για τους επαγγελματίες αποκατάστασης σε χαμηλού και μεσαίου εισοδήματος περιβάλλοντα. Μια έρευνα από 114 χώρες, έδειξε ότι οι 37 χώρες δεν είχαν λάβει μέτρα για την εκπαίδευση του προσωπικού αποκατάστασης (22). 'Οπου υπάρχουν σεμινάρια για επαγγελματίες αποκατάστασης, η διδακτέα ύλη συχνά αδυνατεί να καλύψει επαρκώς την περιοχή γνώσεως της κάκωσης. Ανεπίσημα στοιχεία δείχνουν ότι, ενώ πολλά εκπαιδευτικά προγράμματα περιλαμβάνουν την κάκωση νωτιαίου μυελού στη διδακτέα ύλη, οι πληροφορίες συνήθως παραδίδονται μέσω μιας σειράς διαλέξεων, και αφιερώνεται πολύ λίγος χρόνος στις πρακτικές πλευρές της φροντίδας. Η έλλειψη της τεχνογνωσίας μεταξύ των φορέων παροχής υπηρεσιών αναφέρεται ότι είναι ένα σημαντικό εμπόδιο στα άτομα με αναπηρία να λάβουν την κατάλληλη υποστηρικτική τεχνολογία (75). Σε μια μελέτη στο Maine, στις Ηνωμένες Πολιτείες της Αμερικής, αναφέρεται ότι οι επαγγελματίες στο χώρο της αποκατάστασης δεν είχαν καθόλου ή μόνο τις πολύ βασικές γνώσεις στην παροχή υποστηρικτικής τεχνολογίας (76). Εργοθεραπευτές που ασχολούνται με παιδιά ανέφεραν ότι είχαν λάβει ανεπαρκή κατάρτιση και τεχνική υποστήριξη, καθώς και ότι είχαν έλλειψη αυτοπεποίθησης στα κομμάτια που αφορούσαν την παροχή υποστηρικτικής τεχνολογίας (75). Η χαμηλή συχνότητα εμφάνισης κακώσεων νωτιαίου μυελού σημαίνει επίσης ότι οι επαγγελματίες υγείας που αντιμετωπίζουν τα άτομα με ΚΝΜ είναι συχνά ανεπαρκώς εκπαιδευμένοι να αντιμετωπίσουν αυτούς τους ανθρώπους που χρειάζονται μια συνεχή φροντίδα. Μια μελέτη που πραγματοποιήθηκε στην Αυστραλία έδειξε ότι η πλειονότητα των συμμετεχόντων έλαβε περιορισμένες κατά τόπους εξειδικευμένες
γνώσεις για την ΚΝΜ και αυτό είναι ένα τεράστιο εμπόδιο στις ανάγκες που προκύπτουν (5). Αρκετές μελέτες έχουν δείξει ότι η έλλειψη των γνώσεων της ΚΝΜ στους ιατρούς πρωτοβάθμιας περίθαλψης, οι οποίοι προτιμούνται από πολλά άτομα με κάκωση νωτιαίου μυελού ως παρόχους υγείας, είναι ένα εμπόδιο στην χορήγης πρόληψης και συνεχιζόμενης υγείας στην ΚΝΜ (48, 77-80).
Η αντιμετώπιση των εμποδίων Τα άρθρα 4 και 26 της Σύμβασης για τα Δικαιώματα των ΑμεΑ (CRPD) τονίζουν τις υποχρεώσεις των κρατών μελών να προωθήσουν την εκπαίδευση των επαγγελματιών υγείας και του λοιπού προσωπικού που εργάζεται με άτομα με ειδικές ανάγκες (21). Για την κάλυψη των αναγκών των ατόμων με ΚΝΜ, οι χώρες πρέπει να εξετάσουν μια σειρά από στρατηγικές ενδυνάμωσης των ικανοτήτων της υγείας και του εργατικού δυναμικού αποκατάστασης. Αυτές οι στρατηγικές περιλαμβάνουν την εκπαίδευση και την κατάρτιση, αναπτύσσοντας πρακτικές συνεργασίας μεταξύ των επαγγελματιών υγείας, την ανάπτυξη εξειδικευμένης τεχνογνωσίας στην ΚΝΜ μέσα στη χώρα, τη χρήση εναλλακτικών μεθόδων για την τεχνογνωσία σε περιοχές που δεν είναι διαθέσιμες, τη βελτίωση της ποιότητας και της αποτελεσματικότητας στην παροχή υπηρεσιών, και εισάγοντας κίνητρα για να παραμένουν οι\εργαζόμενοι υγείας στις απομακρυσμένες περιοχές. Καθιέρωση και ενίσχυση των προγραμμάτων κατάρτισης στους επαγγελματίες αποκατάστασης Υπάρχει μια παγκόσμια ανάγκη να καθιερωθούν προγράμματα κατάρτισης που θα αντιμετωπίσουν τη σημαντική έλλειψη του προσωπικού αποκατάστασης. Εκπαιδευτικά προγράμματα θα πρέπει να καθιερωθούν σε όλα τα επίπεδα, συμπεριλαμβανομένης της τριτοβάθμιας εκπαίδευσης (προπτυχιακά και μεταπτυχιακά), του επιπέδου της μέσου εκπαίδευσης (πιστοποιητικό) και του επιπέδου εισαγωγικής εκπαίδευσης (που στοχεύουν κλάδους όπως η υγεία της κοινότητας). Εκπαιδευτικά προγράμματα για το προσωπικό αποκατάστασης θα πρέπει να επανεξεταστούν, σε συνεργασία με τους επαγγελματικούς συλλόγους, με τους φορείς εκπαίδευσης και με τις εταιρείες/οργανισμούς κακώσεων νωτιαίου μυελού για να βρεθεί ο καλύτερος τρόπος που θα ενσωματώνουν 109
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
πληροφορίες σχετικά με ΚΝΜ, με τη υγεία και την αποκατάσταση συμπεριλαμβανομένης και της υποστηρικτικής τεχνολογίας.
Στήριξη συνεχιζόμενης επαγγελματικής ανάπτυξης Η συνεχής επαγγελματική ανάπτυξη (συμπεριλαμβανομένης της εποπτείας) είναι απαραίτητη για τη διατήρηση ή την αναβάθμιση των γνώσεων και των δεξιοτήτων του εν ενεργεία προσωπικού υγείας και αποκατάστασης, και μπορεί να συνδεθεί με την εγγραφή και άδεια άσκησης επαγγέλματος. Στην Αυστραλία, ένα μοντέλο παροχής υπηρεσιών, στο οποίο τοπικοί επαγγελματίες υγείας είχαν την εκπαίδευση και επαγγελματική υποστήριξη, βρέθηκε ότι βελτίωνει την αυτοπεποίθησή τους, όσον αφορά τη διαχείριση των ατόμων με ΚΝΜ (47). Διάφοροι τρόποι παροχής μπορεί να χρησιμοποιηθούν, συμπεριλαμβανομένων το πρόσωπο με πρόσωπο, επί της δουλειάς ή μέσω ίντερνετ εκπαίδευση, καθώς επίσης και τηλεϊατρικής /τηλεαποκατάστασης. Ο συγκεκριμένος τρόπος που χρησιμοποιείται θα εξαρτάται από το πλαίσιο και το μοντέλο της παροχής υπηρεσιών (73). Ενώ ορισμένες ανάγκες υγειονομικής περίθαλψης είναι μοναδικές στα άτομα με κάκωση νωτιαίου μυελού (π.χ. η αυτόνομη δυσαντανακλαστικότητα), πολλές άλλες ανάγκες υγειονομικής περίθαλψης (π.χ. του εντέρου, της ουροδόχου κύστης και της διαχείριση ελκών πιέσεων) είναι επίσης σχετικές σε άλλα προβλήματα υγείας. Θα μπορούσε να δοθεί βαρύτητα στην ολοκλήρωση και επέκταση της κατάρτισης σε θέματα που έχουν σχέση με ένα ευρύ φάσμα καταστάσεων υγείας, καθώς και στις στρατηγικές για την προώθηση της συνεργασίας πρακτικών μεταξύ στο προσωπικό υγειονομικής περίθαλψης και αποκατάστασης (73, 81). Τα πακέτα E-learning, όπως αυτή που ξεκίνησε από τη Διεθνή Κοινότητα Νωτιαίου Μυελού (ISCOS) το 2012, μπορεί να βοηθήσουν έτσι ώστε να παρέχουν βασικές πληροφορίες και υποστήριξη των επαγγελματιών υγείας και αποκατάστασης που ασχολούνται στον τομέα της ΚΝΜ (82). Διεθνή, τοπικά και επαγγελματικά εθνικά δίκτυα, όπως το Διεθνές Δίκτυο Νωτιαίου Μυελού των Φυσικοθεραπευτών (SCIPT) μπορούν επίσης να βοηθήσουν στη διευκόλυνση ανταλλαγής ιδεών, γνώσεων και πόρων (83). Η "Observerships», μια πρωτοβουλία της Εκπαιδευτικής Επιτροπής της 110
Διεθνούς Εταιρείας Νωτιαίου Μυελού, είναι σχεδιασμένη να παρέχει στους δικαιούχους επαγγελματίες υγείας ευκαιρίες να παρακολουθούν τη διαχείριση πρακτικών ζητημάτων σε κέντρα ΚΝΜ για χρονικό διάστημα που κυμαίνεται από τρεις εβδομάδες έως τρεις μήνες (84).
Η αξιοποίηση μη επαγγελματιών υγείας για την παροχή υπηρεσιών Καθώς οι χρόνοι ενδονοσοκομειακής αποκατάστασης έχουν γίνει μικρότεροι, οι επαγγελματίες αποκατάστασης αντιμετωπίζουν την πρόκληση για παροχή υπηρεσιών σε μικρότερες προθεσμίες (71). Όπως τονίζεται παραπάνω στο κομμάτι παροχής υπηρεσιών, η αμοιβαία αλληλοϋποστήριξη, η καθοδήγηση, η συμβουλευτική και η κατάρτιση μπορούν να φανούν χρήσιμα στην παροχή οδηγιών και βοήθειας σε άτομα με κάκωση νωτιαίου μυελού και μπορούν να βοηθήσουν να ξεπεραστούν βασικές αδυναμίες του συστήματος υγείας. Πολλοί οργανισμοί, όπως μη κυβερνητικές οργανώσεις της κοινότητας και οργανώσεις ατόμων με ειδικές ανάγκες, έχουν δημιουργήσει προγράμματα αλληλοϋποστήριξης ομοιοπαθών. Οι εξειδικευμένες υπηρεσίες στην ΚΝΜ έχουν επίσης συμπεριλάβει προγράμματα αλληλοϋποστήριξης ομοιοπαθών και τις έχουν εντάξει στις υπηρεσίες ιατρικής φροντίδας και αποκατάστασης. Η παροχή εκπαίδευσης και επίβλεψης είναι απαραίτητη για την επιτυχία των προγραμμάτων αυτών που παραδίδονται από μη επαγγελματίες υγείας (71). Εξασφάλιση ότι τα μέλη της οικογένειας λαμβάνουν την κατάλληλη εκπαίδευση και υποστήριξη Τα μέλη της οικογένειας μπορεί να αποτελέσουν πολύτιμους πόρους, μεταξύ των άλλων, ώστε να βοηθήσουν τους ανθρώπους με Κακώσεις Νωτιαίου Μυελού να έχουν πρόσβαση στη φροντίδα, να υποστηρίξουν την εφαρμογή του προγράμματος αποκατάστασης, και να παρέχουν βοήθεια στις δραστηριότητες καθημερινής ζωής. Στη Νιγηρία αναπτύχθηκε ένα εντατικό πρόγραμμα 12 εβδομάδων για τη διαχείριση των ΚΝΜ. Το Ορθοπεδικό Νοσοκομείο είχε περιορισμένα κρεβάτια και δεν μπορούσε να φιλοξενήσει ανθρώπους για νοσηλεία μακράς διάρκειας. Τα μέλη της οικογένειας εκπαιδεύτηκαν σε διάφορες χρονικές
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
περιόδους για να συμπληρώσουν και να ξεπεράσουν την έλλειψη του έμπειρου και διαθέσιμου προσωπικού (85). Οι μη κυβερνητικές οργανώσεις μπορούν επίσης να παρέχουν εκπαίδευση και υποστήριξη στους φροντιστές των ανθρώπων με ΚΝΜ στις αναπτυσσόμενες χώρες, με στόχο τη συντήρηση της φροντίδας υγείας, τη χειρωνακτική μεταφορά φορτίων και τα δύσκολα συναισθηματικά ζητήματα (86).
Τεχνολογίες υγείας Οι τεχνολογίες υγείας απαιτούνται σε όλες φάσεις της υγειονομικής περίθαλψης στους ανθρώπους με ΚΝΜ, και είναι απαραίτητες για την ασφαλή και αποτελεσματική πρόληψη, διάγνωση, θεραπεία και αποκατάσταση (87). Οι τεχνολογίες υγείας μπορούν σε γενικές γραμμές να κατηγοριοποιηθούν στους ακόλουθους τομείς: στα επείγοντα και στη βασική χειρουργική φροντίδα, στη διαγνωστική και εργαστηριακή τεχνολογία, στη διαγνωστική απεικόνιση, και στα ιατρικά βοηθήματα (συμπεριλαμβανομένων της υποστηρικτικής τεχνολογίας). Παρά το γεγονός ότι συζητήθηκε και αλλού, η υποστηρικτική τεχνολογία και τα αναπηρικά αμαξίδια είναι το επίκεντρο της παρούσης ενότητας.
Εμπόδια Πολλές χώρες μπορεί να μην είναι σε θέση να ανταποκριθούν στις ανάγκες ατόμων με ΚΝΜ για υποστηρικτική τεχνολογία, λόγω των εμποδίων που συνδέονται με την παραγωγή, τη διανομή και τη συντήρηση των συσκευών. Σε πολλές χώρες χαμηλού και μεσαίου εισοδήματος, η παραγωγή και η διανομή της υποστηρικτικής τεχνολογίας είναι μικρής κλίμακας ή σε ορισμένες περιπτώσεις ανύπαρκτη (50, 88). Πολλές χώρες έχουν περιορισμένη πρόσβαση στο υλικό και στον εξοπλισμό που απαιτείται για την παραγωγή υποστηρικτικών συσκευών. Η ζήτηση υποστηρικτικών τεχνολογιών στις αναπτυσσόμενες χώρες μπορεί να είναι περιορισμένη, λόγω της μειωμένης αγοραστικής δυνατότητας των δυνητικά χρηστών, και της περιορισμένης κατανόησης από τους χρήστες, της υπάρξεως και του οφέλους των συσκευών. Πολλές χώρες με περιορισμένους πόρους βασίζονται σε δωρεές από διεθνείς οργανισμούς και μη κυβερνητικές οργανώσεις. Αυτό το μοντέλο χρησιμοποιείται συνήθως για την προμήθεια και τη διανομή νέων ή
ανακαινισμένων αναπηρικών αμαξιδίων σε χώρες με χαμηλό εισόδημα. Ενώ η προσέγγιση αυτή είναι καλοπροαίρετη και επιτρέπει τη διανομή μεγάλου αριθμού αμαξιδίων με οικονομικά αποδοτικό τρόπο, έχει αρκετούς περιορισμούς, όπως περιγράφονται παρακάτω, και δεν είναι μακροπρόθεσμα βιώσιμη, δεδομένου ότι δεν χτίζει τις δυνατότητες κατά τόπους (89). Η υποστηρικτική τεχνολογία δεν εφαρμόζεται σε όλα τα περιβάλλοντα. Για παράδειγμα, σχέδια αναπηρικών αμαξιδίων που είναι κατάλληλα για άτομα με ΚΝΜ σε χώρες υψηλού εισοδήματος, μπορεί να μην είναι χρήσιμα σε χώρες με χαμηλό εισόδημα (18). Επιπλέον, το επίπεδο παροχής υπηρεσιών που συνοδεύει τη δωρεά της υποστηρικτικής τεχνολογίας μπορεί επίσης να ποικίλει μεταξύ των διάφορων οργανισμών (88). Επίσης οι συσκευές, συχνά συνταγογραφούνται χωρίς να παρέχεται κατάλληλη εκπαίδευση και υποστήριξη στους χρήστες (56, 90), κάτι που μπορεί να δημιουργήσει μια σειρά επιπτώσεων. Η εγκατάλειψη ή η μη χρήση της υποστηρικτικής τεχνολογίας μπορεί να είναι ένας δείκτης των ανικανοποίητων αναγκών. Τα ποσοστά εγκατάλειψης της υποστηρικτικής τεχνολογίας έχουν φανεί ότι είναι υψηλότερα κατά τη διάρκεια του πρώτου έτους χρήσης, και στη συνέχεια, πάλι μετά από πέντε χρόνια χρήσης (91). Η υποστηρικτική τεχνολογία μπορεί να εγκαταλειφθεί, ως αποτέλεσμα αλλαγής των προτεραιοτήτων των χρηστών, κακής απόδοσης της συσκευής (από την άποψη της αποτελεσματικότητας, της αξιοπιστίας, της αντοχής, της άνεσης, της ασφάλειας ή της ευκολίας χρήσης), καθώς και λόγω έλλειψης συμμετοχής των χρηστών στην διαδικασία επιλογής (91). Ο τύπος της συσκευής και το επίπεδο της κάκωσης παίζουν κατά πάσα πιθανότητα σημαντικό ρόλο στην εγκατάλειψη της τεχνολογίας (92).
Η αντιμετώπιση των εμποδίων Χαμηλού κόστους βιώσιμες στρατηγικές απαιτούνται για την παροχή κατάλληλων υποστηρικτικών τεχνολογιών στις αναπτυσσόμενες χώρες. Η καταλληλότητα της κάθε προσέγγισης θα εξαρτηθεί από το πλαίσιο που υπάρχει σε κάθε χώρα και μπορεί να ποικίλει για τους διάφορους τύπους υποστηρικτικής τεχνολογίας. Οι παράγοντες προς εξέταση περιλαμβάνουν τα δεδομένα (τις οικονομικές και τεχνικές προϋποθέσεις), τη βιωσιμότητα (τη δυνατότητα για την 111
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
καθιερωμένη παραγωγή χωρίς εξωτερικά στοιχεία ή με μακροπρόθεσμα και σταθερά εξωτερικά στοιχεία), την καταλληλότητα (το πόσο καλά η τεχνολογία συναντά τις ανάγκες του χρήστη) και τις επιπτώσεις (την ποσότητα που μπορεί να παραχθεί και παραδοθεί σε μια δεδομένη χρονική περίοδο) (88).
Ο σχεδιασμός της κατάλληλης τεχνολογίας Η κατάλληλη τεχνολογία προϋποθέτει ότι τα χαρακτηριστικά του σχεδιασμού της προσαρμόζονται στο περιβάλλον του χρήστη, στις ανάγκες και στις προτιμήσεις του (93). Τοπικά θέματα, όπως το ανώμαλο έδαφος, η περιορισμένη πρόσβαση σε ηλεκτρικό ρεύμα και η προμήθεια των εξαρτημάτων μιας συσκευής όταν συμβαίνει μια βλάβη, πρέπει να ληφθούν υπόψη (18, 88, 94). Διάφοροι οργανισμοί έχουν δημιουργήσει βοηθήματα κίνησης στις αναπτυσσόμενες χώρες, τα οποία ξεπερνούν πολλά από τα τοπικά ζητήματα (72, 95). Τα αρχικά πρότυπα μπορούν να βελτιώσουν την ποιότητα της υποστηρικτικής τεχνολογίας, αυξάνοντας την αξιοπιστία των προϊόντων και μειώνοντας πιθανούς κινδύνους για τους χρήστες (96). Ο Διεθνής Οργανισμός Τυποποίησης (ISO) έχει θεσπίσει προδιαγραφές για τα χειροκίνητα και ηλεκτροκίνητα αμαξίδια και τα σκούτερ, και προδιαγραφές μεταφοράς που σχετίζονται με τη μεταφορά ανθρώπων που χρησιμοποιούν αναπηρικά αμαξίδια με λεωφορεία ή βαν (96). Ωστόσο, οι προδιαγραφές αυτές δεν είναι κατ' ανάγκη εφαρμόσιμες σε όλες τις συνθήκες, και είναι σημαντικό να αναπτυχθούν εθνικά πρότυπα, τα οποία λαμβάνουν υπόψη παράγοντες, όπως είναι το τοπικό περιβάλλον και τα χαρακτηριστικά των χρηστών (18, 97). Επιλογή των κατάλληλων μοντέλων για την παραγωγή και τη διανομή Διαφορετικά μοντέλα παραγωγής μπορούν να χρησιμοποιηθούν σε χώρες με χαμηλό εισόδημα για να αυξήσουν τη διαθεσιμότητα της υποστηρικτικής τεχνολογίας. Για παράδειγμα, μοντέλα εργαστηρίων μικρής κλίμακας συνεπάγονται τη δημιουργία τοπικών κατασκευαστικών εγκαταστάσεων που μπορεί να αυξήσουν την βιωσιμότητα, να δημιουργήσουν θέσεις απασχόλησης σε άτομα της τοπικής κοινωνίας (συμπεριλαμβανομένων και των ατόμων με ειδικές ανάγκες), και να προσφέρουν προϊόντα που μπορεί να είναι πιο προσιτά και πιο κατάλληλα στην τοπική κοινωνία (89, 112
98). Ωστόσο, τα μοντέλα αυτά είχαν διαφορετικά επίπεδα επιτυχίας σε χώρες χαμηλού εισοδήματος, καθώς απαιτούν σημαντικό χρόνο και οικονομικές επενδύσεις για να στηθούν και να διατηρηθούν. Επιπλέον, έχουν συχνά περιορισμένη ικανότητά να ανταποκριθούν στις συνολικές ανάγκες του πληθυσμού (88). Ορισμένες χώρες, όπως η Ινδία και η Κίνα έχουν την ικανότητα να αναλάβουν την παραγωγή σε μεγαλύτερη κλίμακα, παρέχοντας προϊόντα σε εθνικό, περιφερειακό και τοπικό επίπεδο.
Ολοκληρωμένη παροχή υπηρεσιών Χρειάζονται οι κατάλληλες υπηρεσίες για να βοηθήσουν τους ανθρώπους να επιλέξουν, να αποκτήσουν και να μάθουν να χρησιμοποιούν τις υποστηρικτικές τεχνολογίες. Οι υπηρεσίες αυτές περιλαμβάνουν: αξιολόγηση και συνταγογράφηση, επιλογή και τοποθέτηση, εκπαίδευση των χρηστών και υποστήριξη στη χρήση της συσκευής, παρακολούθηση για την ασφαλή και αποτελεσματική χρήση, και συνεχή συντήρηση, επισκευή και αντικατάσταση. Χωρίς τις ολοκληρωμένες υπηρεσίες σε μια περιοχή, οι ανάγκες των χρηστών, που αλλάζουν με το χρόνο, δεν μπορούν να εξυπηρετηθούν, τα αποτελέσματα τίθενται σε κίνδυνο, και οι βοηθητικές συσκευές μπορεί να εγκαταλειφθούν (89). Μια μελέτη στη Γουατεμάλα, η οποία αξιολόγησε τις αντιλήψεις των φροντιστών, που έλαβαν δωρεές αναπηρικά αμαξιδία στα παιδιά με αναπηρίες που φρόντιζαν (94), έδειξε ότι, ενώ αντιλαμβάνονταν την ωφέλεια των αμαξίδιων, επισήμαναν την ανάγκη της λήψης αμαξιδίων σε συνεργασία με τις τοπικές υπηρεσίες που θα στηρίξουν της χρήσης τους (βλέπε επίσης Πλαίσιο 5.3.). Δημοσιεύσεις όπως Οι κατευθυντήριες γραμμές σχετικά με την παροχή χειροκίνητων αναπηρικών αμαξιδίων σε λιγότερο επαρκή περιβάλλοντα παρέχουν χρήσιμες πληροφορίες και συστάσεις για τις υπηρεσίες παράδοσης (18). Πολλά διδάγματα μπορούμε επίσης να πάρουμε από χώρες με ολοκληρωμένα συστήματα παράδοσης (45). Για παράδειγμα, στις ΗΠΑ του 1998 η Δράση της Υποστηρικτικής Τεχνολογίας χρηματοδοτεί σε κάθε κράτος προγράμματα για χορήγηση ενός ευρέως φάσματος υπηρεσιών, συμπεριλαμβανομένης της επίδειξης των κέντρων, των προγραμμάτων δανειοδότησης, της τεχνικής βοήθειας και της ευαισθητοποίησης του
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
κοινού στους αγροτικούς πληθυσμούς (103). Η επίδειξη των κέντρων και οι δανειοδοτήσεις των τραπεζών έχουν τη δυνατότητα να αυξήσουν την ευαισθητοποίηση των χρηστών όσον αφορά τη διαθέσιμη υποστηρικτική τεχνολογία (104), καθώς και να βελτιώσουν τις γνώσεις και τις δεξιότητες των επαγγελματιών που θα υποστηρίξουν τις διαδικασίες λήψης αποφάσεων (104). Οι άνθρωποι είναι σε θέση να δοκιμάσουν βοηθητικές συσκευές στο δικό τους περιβάλλον πριν αποφασίσουν να τις πάρουν, για να δουν αν είναι κατάλληλες για τις ανάγκες τους (91).
Συστήματα πληροφοριών υγείας Όπως επισημαίνεται στο κεφάλαιο 2, πολλές χώρες στερούνται βασικών πληροφοριών της ΚΝΜ (105). Πληροφορίες που σχετίζονται με την ΚΝΜ σε κατ’ άτομο επίπεδο, σε επίπεδο υπηρεσιών και στον πληθυσμό είναι επιτακτική ανάγκη, για να διευκολύνουν τον προγραμματισμό και τον προϋπολογισμό του τομέα υγείας, για να συμβάλλουν στην πρόληψη τραυματισμών και στις προσπάθειες προώθησης της υγείας, και να βοηθήσουν στη βελτίωση της εξέλιξης της αποκατάστασης με τη δρομολόγηση περαιτέρω έρευνας (29, 106). Οι πληροφορίες πρέπει να συλλέγονται σε ατομικό, υπηρεσιακό και πληθυσμιακό επίπεδο ως εξής: 1. Σε επίπεδο ατόμου, οι πληροφορίες θα πρέπει να περιλαμβάνουν την ηλικία, το φύλο, το μηχανισμό ή την αιτία της βλάβης, την ημερομηνία της κάκωσης, τις ημέρες νοσηλείας, τις επιπλοκές, τις συνοδές κακώσεις, τους τύπους των υπηρεσιών που του παρείχαν, τα αποτελέσματα της θεραπείας, τη νευρολογική κατάσταση, τον τόπο μετά το εξιτήριο και τις επανεισαγωγές στο νοσοκομείο (106-110). 2. Σε επίπεδο των ιατρικών υπηρεσιών και υπηρεσιών αποκατάστασης, απαιτούνται πληροφορίες σχετικά με τις υπηρεσίες, τα αποτελέσματα των υπηρεσιών, το κόστος και το όφελος της ιατρικής υπηρεσίας και των υπηρεσιών αποκατάστασης σε επίπεδο εγκαταστάσεων (2, 65, 111). Οι πληροφορίες μπορεί να περιλαμβάνουν το κόστος, τους ανθρώπινους πόρους, τους πόρους για τις εγκαταστάσεις (π.χ. κλίνες), το είδος των υπηρεσιών, τη συχνότητα της παρεχόμενης υπηρεσίας,
την παραπομπή και τη λίστα αναμονής. Όλες οι πληροφορίες μπορούν να χρησιμοποιηθούν και να συγκεντρωθούν μαζί με τα ατομικά στοιχεία εξέλιξης για να προσδιορισθούν τα οικονομικά οφέλη και η αποτελεσματικότητα των υπηρεσιών, όπως επίσης και για να βοηθήσουν στην ανάπτυξη προτεραιοτήτων στην ιατρική έρευνα, στη χρηματοδότηση και στην κατανομή των πόρων (112-115). Θα πρέπει να γίνονται επίσης, περιοδικές αξιολογήσεις των αποτελεσμάτων και των επιπτώσεων (το αίτιο και το αποτέλεσμα) της πολιτικής, των προγραμμάτων και των υπηρεσιών ιατρικής και αποκατάστασης (116). 3. Σε επίπεδο πληθυσμού, η συλλογή δεδομένων μπορεί να χρησιμοποιηθεί για να προσδιοριστεί η επίπτωση, ο επιπολασμός και η αιτιολογία της ΚΝΜ και για να χαρτογραφηθούν οι τάσεις. Είναι επίσης σημαντικό να δοθούν πληροφορίες σχετικά με τα εμπόδια και να διαμεσολαβήσει ένα άτομο που βιώνει την τακτική της νομοθεσίας και των πολιτικών, τις οργανωτικές δομές και τις υπηρεσίες πέραν της υγείας και της αποκατάστασης (π.χ. μεταφορές), καθώς και τις συμπεριφορές (109, 117). Η δημιουργία περιφερειακών ή /και εθνικών μητρώων ατόμων με ΚΝΜ είναι σημαντική (29). Οι χώρες πρέπει να εργάζονται για την ανάπτυξη συστημάτων πληροφοριών εντοπίζοντας τα κενά, όσον αφορά τη διαθεσιμότητα των δεδομένων και την ποιότητα, και ιεραρχώντας τα είδη των πληροφοριών που απαιτούνται. Για να διευκολυνθεί η ταξινόμηση και η σύγκριση των δεδομένων σε διεθνές, περιφερειακό και εθνικό επίπεδο, η συνέπεια είναι απαραίτητη στο όλο πλαίσιο και στην ορολογία που χρησιμοποιείται (106). Το κεφάλαιο 2 δίδει λεπτομέρειες των διεθνών πλαισίων που αναπτύχθηκαν, για να βοηθήσουν τα συστήματα υγείας να συλλέξουν πληροφορίες σχετικά με ΚΝΜ.
Χρηματοδότηση και προσιτό κόστος Εμπόδια Οι άνθρωποι που έχουν υποστεί ΚΝΜ απαιτούν συνεχή πρόσβαση σε ιατρική περίθαλψη και αποκατάσταση από την πρώτη στιγμή της κάκωσης. Ως εκ 113
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Πλαίσιο 5.3. “Οι τροχοί της αλλαγής”: προς τις κατάλληλες υπηρεσίες για τους χρήστες αναπηρικών αμαξιδίων στη Ρουμανία Η ανάγκη για κατάλληλες υπηρεσίες αμαξιδίων στη Ρουμανία συνεχίζει να αυξάνει κάθε χρόνο. Το 2010 υπολογίστηκε ότι "ένας στους πέντε ανθρώπους, που χρειάζονται αναπηρική καρέκλα, δεν διαθέτουν τέτοιο εξοπλισμό ... Εκείνοι που δεν εξυπηρετούνται είναι, είτε εντελώς ακινητοποιημένοι, ή θα πρέπει να φροντίσουν τον εαυτό τους"(99). Το Ίδρυμα Κίνητρο στη Ρουμανία (MRF) ιδρύθηκε το 1995 για να παρέχει βιώσιμα προγράμματα που θα βελτιώσουν της ποιότητας ζωής των Ρουμάνων με αναπηρίες και έχει υποστηρίξει πάνω από 9000 παιδιά και ενήλικες με κινητικές αναπηρίες στη χώρα για να αποκτήσουν πρόσβαση σε ένα ολοκληρωμένο πακέτο υπηρεσιών. Το πρόγραμμα του MRF για τα αναπηρικά αμαξίδια έχει μεγαλώσει την αρχική τάση χρηστών αναπηρικού αμαξιδίου από 20 σε περίπου 1000 που εξυπηρετούνται ετησίως, με την εκπαίδευση ομάδας από ομοιοπαθείς πάσχοντες για τη χρήση κατάλληλου εξοπλισμού κινησης και ανεξάρτητης διαβίωσης. Τα αναπηρικά αμαξίδια του MRF είχαν αρχικά χρηματοδοτηθεί από δωρεές και επιχορηγήσεις. Τώρα, όμως, χρηματοδοτούνται εν μέρει από τον Εθνικό Οργανισμό Ασφάλισης Υγείας (ΝΗΙΑ), ο οποίος καλύπτει το 16-30% των συνολικών απαιτήσεων. Το 2004, το 2009 και το 2011, η χρηματοδότηση έγινε από την Υπηρεσία Διεθνούς Ανάπτυξης των Ηνωμένων Πολιτείων (USAID), ήταν ζωτικής σημασίας για να αυξηθεί η δυνατότητα εξυπηρέτησης των MRF χρηστών των αναπηρικών αμαξιδίων. Η χρηματοδότηση υποστήριξε επτά ομάδες της περιοχής, που η κάθεμία περιλαμβάνει ένα τεχνικό αναπηρικού αμαξιδίου/ εκπαιδευτή διαβίωσης (χρήστης αναπηρικού αμαξιδίου) ανεξάρτητο και ένα φυσικοθεραπευτή για να παρέχει τις ακόλουθες υπηρεσίες: ■ Αξιολόγηση και συνταγογράφηση των αναπηρικών αμαξιδίων: αυτό περιλαμβάνει εξατομικευμένες μετρήσεις για να εξασφαλίστει ότι τα αμαξίδια ταιριάζουν με τις ατομικές ανάγκες του κάθε χρήστη. ■ Παροχή αναπηρικών αμαξιδίων και εξειδικευμένων καθισμάτων: αναπηρικές καρέκλες -με ή χωρίς προσαρμογές- παρέχονται σε ένα ευρύ φάσμα χρηστών αναπηρικών αμαξιδίων, καθώς και ειδικός εξοπλισμός για την καθιστική θέση στα παιδιά με εγκεφαλική παράλυση. ■ Ανεξάρτητη εκπαίδευση διαβίωσης: Εκπαίδευση υπό την καθοδήγη ομοιοπαθών είναι διαθέσιμη για τους χρήστες αναπηρικών αμαξιδίων και περιλαμβάνει την κατάρτιση των δεξιοτήτων στην αναπηρική καρέκλα, της προσωπικής υγιεινής, της αυτοεξυπηρέτησης αυτοδιαχείρησης (π.χ. πρόληψη και διαχείριση κατακλίσεων και λοιμώξεων του ουροποιητικού συστήματος), της σεξουαλικότητας και της κοινωνικής ένταξης, της συμβουλευτικής και των ομάδων στήριξης από ομοιοπαθείς. ■ Σπορ με αναπηρικό καροτσάκ ■ Αρχιτεκτονική προσβασιμότητα: η πρώτη εθνική ηλεκτρονική πηγή πρόσβασης των αναπηρικων αμαξίδιων σε κτίρια στη Ρουμανία (100, 101). Σημαντικές προκλήσεις πρέπει να ξεπεραστούν προτού οι περισσότεροι Ρουμάνοι με κινητικά προβλήματα μπορέσουν να έχουν πρόσβαση στα κατάλληλα αμαξίδια μαζί με την απαραίτητη εκπαίδευση. Οι Ρουμάνοι που χρήζουν αναπηρικού αμαξιδίου έχουν το δικαίωμα να λάβουν ένα κάθε πέντε χρόνια, στη βασική τιμή που καταβάλλεται από τον Εθνικό Οργανισμό Ασφάλισης Υγείας (ΝΗΙΑ), που θα πιστοποιηθεί από διανομείς. Η έγκριση για τη χρηματοδότηση μπορεί να πάρει αρκετούς μήνες και οι ατομικές ανάγκες του κάθε χρήστη δεν υπολογίζονται καθώς αυτή η τιμή αυτή δεν περιλαμβάνει την αξιολόγηση, τις προσαρμογές ή της κατάρτισης δεξιοτήτων στην αναπηρική καρέκλα. Το Ίδρυμα Κινητρο της Ρουμανίας MRF επιχείρησε να ξεπεράσει αυτά τα προβλήματα με διάφορους τρόπους, και συγκεκριμένα: ■ Η συνειδητοποίηση της χορήγησης κατάλληλης αναπηρικής καρέκλας έχει αυξηθεί σύμφωνα με τη συνταγογράφηση των ειδικών. Το 2010, το MRF εισήγαγε τις WHO-ISPO-USAID κατευθυντήριες γραμμές σχετικά με τη χορήγηση της κατάλληλης αναπηρικής καρέκλας με λιγότερο ρυθμίσεις επαρκών πόρων. Το 2011 το MRF διοργάνωσε το πρώτο σεμινάριο εκπαίδευσης της ΠΟΥ για τη συνταγογράφη αμαξιδίων από επαγγελματίες και σχεδιάζει να επεκτείνει αυτή την εκπαίδευση σε εθνικό επίπεδο για να αυξηθεί η χορήγηση κατάλληλου αναπηρικού αμαξιδίου στη Ρουμανία. Το 2012, το MRF εισήγαγε στον κώδικα Επαγγελμάτων της Ρουμανίας (COR) ένα νέο επάγγελμα - που αξιολόγεί αναπηρικά αμαξίδιο, συνταγογραφεί και προσαρμόζει τους Τεχνικούς, και εργάζεται για να αναπτύξει ένα επίσημα αναγνωρισμένο εκπαιδευτικό πρόγραμμα και σεμινάριο για το επάγγελμα αυτό, που βασίζεται στο εκπαιδευτικό πακέτο χρήσης αναπηρικού απμαξιδίου από τον Παγόσμιο Οργανισμό Υγείας (102). ■ Το ταμείο για τα αμαξίδια έχει συσταθεί με τη βοήθεια των χορηγών γιανα διασφαλιστεί η κατάλληλη παροχή και η ταχεία παράδοση. ■ Στα ταμεία αυτά τέθηκε από τους διεθνείς δωρητές να καλύψουν τις ανάγκες μεσοπρόθεσμα. Με την προσπάθεια να ξεπεράστούν οι προκλήσεις της παροχής αναπηρικών αμαξιδίων στη Ρουμανία, το MRF επιτρέπει σε περισσότερους ανθρώπους με κινητικά προβλήματα να αποκτήσουν τα αναπηρικά αμαξίδια που χρειάζονται, και να αναπτύξουν τις δεξιότητες και την αυτοπεποίθηση να συμμετέχουν στην εκπαίδευση, την απασχόληση και την κοινωνική ζωή. Πηγή (101).
114
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
τούτου, τόσο οι αρχικές, όσο και οι τρέχουσες δαπάνες που συνδέονται με την ΚΝΜ μπορεί να είναι σημαντικά υψηλές (40, 118). Τα έξοδα αυτά διαφέρουν, ανάλογα με το πλαίσιο και τον τύπο που απαιτούνται (40) και δεν μπορούν να γενικευθούν σε όλες τις καταστάσεις, λόγω των διαφορών στις δομές του συστήματος υγείας και της χρηματοδότησης. Το κεφάλαιο 2 δίνει περαιτέρω λεπτομέρειες. Οι άνθρωποι με ΚΝΜ συχνά αντιμετωπίζουν επιπλέον δαπάνες για την παροχή υπηρεσιών υγείας και πληρωμές “εκτός της τσέπης”, οι οποίες μπορεί να φορτώσουν με αδικαιολόγητη πίεση τόσο τα άτομα, όσο και τις οικογένειές τους (79). Σε γενικές γραμμές, τα άτομα με αναπηρίες αντιμετωπίζουν υψηλότερα ποσοστά φτώχειας από τα μη ανάπηρα άτομα (2) και ως εκ τούτου, είναι απίθανο να μπορέσουν να αντέξουν οικονομικά το κόστος που συνδέεται με τη φροντίδα της υγείας τους, την αποκατάσταση και την υποστηρικτική τεχνολογία. Μια μελέτη στη Νιγηρία (μια από τις λίγες, που πραγματοποιήθηκε σε χώρα με χαμηλό εισόδημα) ανέφερε ότι, για το 41,1% των ατόμων με ΚΝΜ που συμμετέχουν στη μελέτη, το κόστος της οξεία φάσης εκπροσωπούσε περισσότερο από το 50% του ετήσιου εισοδήματός τους (119). Σε αυτή τη μελέτη, "κόστος" εννοείται τόσο οι άμεσες δαπάνες (π.χ. τα έξοδα νοσηλείας) όσο και οι έμμεσες δαπάνες (π.χ. η απώλεια του εισοδήματος τους). Όπου το κόστος της υποστηρικτικής τεχνολογίας δεν καλύπτεται ή δεν επιδοτείται από τρίτους, τα προϊόντα αυτά δεν μπορεί να είναι προσπελάσιμα στα άτομα με ΚΝΜ, και ιδίως σε εκείνους που ζουν σε κοινωνίες με χαμηλό και μεσαίο εισόδημα (120). Μια μελέτη που πραγματοποιήθηκε μεταξύ των ανθρώπων με σωματικές βλάβες (συμπεριλαμβανομένης της ΚΝΜ) στην Ουγκάντα, έδειξε ότι το βασικό εμπόδιο για τις βοηθητικές συσκευές ήταν οικονομικό, η αγορά, η συντήρηση και το κόστος αντικατάστασης ήταν πολύ ακριβό (121). Ένα άτομο με τραυματική κάκωση νωτιαίου μυελού που μόλις υποβλήθηκε σε υψηλού κόστους ιατρική περίθαλψη και αποκατάσταση, δεν είναι δυνατό να του απομείνει κάποιο κεφάλαιο για να αγοράσει και να συντηρήσει ένα κατάλληλο αμαξίδιο. Χρηματοοικονομικά εμπόδια υπάρχουν επίσης, και σε περιοχές με υψηλό εισόδημα. Για παράδειγμα, στις ΗΠΑ σχεδόν το ήμισυ της συνολικής υποστηρικτικής τεχνολογίας λαμβάνεται χωρίς την οικονομική βοήθεια
από κάποιο τρίτο φορέα (19). Οι κυβερνήσεις, οι μη κυβερνητικές οργανώσεις ή οι εταιρείες ασφάλισης υγείας συνήθως πληρώνουν, ή εγγυώνται, την παροχή της “ιατρικά αναγκαίας” υποστηρικτικής τεχνολογίας, αλλά το κόστος της συντήρησης και οι περιορισμοί κάλυψής της, μπορεί να περιορίζουν την πρόσβαση σε αυτή την τεχνολογία (19). Οι άνθρωποι με αναπηρίες συχνά έρχονται αντιμέτωποι με τις απαιτήσεις καταλληλότητας, τους περιορισμούς, τη γραφειοκρατία, τους κανόνες, τους κανονισμούς, τις διαψεύσεις και τις αρνήσεις. Αυτό μπορεί να οδηγήσει σε ανισότητες, λόγω των τύπων της τεχνολογίας που οι άνθρωποι από τα κατώτερα κοινωνικοοικονομικά στρώματα μπορούν να αποκτήσουν. Για παράδειγμα, τα άτομα με ΚΝΜ από τα χαμηλά κοινωνικοοικονομικά στρώματα ήταν περισσότερο πιθανό να λάβουν συγκεκριμένων προδιαγραφών αναπηρικά αμαξίδια κι όχι εκείνα που είναι προσαρμοσμένα στις δικές τους ανάγκες (93).
Η αντιμετώπιση των εμποδίων Οι χώρες πρέπει να εξασφαλίσουν επαρκή κεφάλαια για τη χρηματοδότηση των υπηρεσιών υγείας, έτσι ώστε όλοι οι άνθρωποι, συμπεριλαμβανομένων εκείνων με κάκωση νωτιαίου μυελού, να μπορούν να έχουν πρόσβαση στις υπηρεσίες που χρειάζονται. Οι διάφορες επιλογές χρηματοδότησης έχουν τη δυνατότητα να αυξήσουν τη διαθεσιμότητα των υπηρεσιών της υγείας στον γενικό πληθυσμό, καθώς και στα άτομα με ΚΝΜ (2). Αυτές οι επιλογές περιλαμβάνουν: άντληση επαρκών πόρων για την υγεία αυξάνοντας την αποδοτικότητα της συλλογής των εσόδων, εκ νέου ιεράρχηση των κρατικών δαπανών, καινοτόμο συγκέντρωση χρημάτων, και βελτίωση της συνολικής απόδοσης του συστήματος υγείας. Η βελτιωμένη και συντονισμένη υπηρεσία παράδοσης, για παράδειγμα, μπορεί να ελαχιστοποιήσει τα διοικητικά έξοδα, την αποφυγή επικαλύψεων και καθυστερήσεων στον τομέα της υγείας και αποκατάστασης, η οποία μπορεί να οδηγήσει σε ανάγκη για παρατεταμένη και περισσότερο ακριβή φροντίδα υγείας (π.χ. τα έλκη πιέσεως). Στρατηγικές για τη βελτίωση της πρόσβασης στην υποστηρικτική τεχνολογία περιλαμβάνουν την προώθηση της τοπικής παραγωγής, τη μείωση δασμών και φόρων και τη βελτίωση της οικονομικής κλίμακας με βάση την αναγνωρισμένη ανάγκη (2). Τα αίτια της εγκατάλειψης της τεχνολογίας και οι επιπτώσεις του κό115
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
στους που συνδέονται με αυτό, υποδεικνύουν ότι η προσοχή θα πρέπει να δοθεί στο δάνειο, την ενοικίαση ή την ανακύκλωση του εξοπλισμού κατά τη διάρκεια της περιόδου, που η εγκατάλειψη είναι πολύ πιθανή (91). Εξοικονομούμενα κονδύλια μέσω προγραμμάτων δανείου ή ενοικίασης θα μπορούσαν να χρησιμοποιηθούν για την υποστήριξη των συστημάτων χρηματοδότησης για τις μακροπρόθεσμες ανάγκες (91). Σε ορισμένες χώρες, εθνικά ή κρατικά συστήματα ασφάλισης, υποχρεωτική ασφάλιση αστικής ευθύνης ή μοντέλα εθελοντικής προσφοράς προβλέπουν αποζημίωση στους ανθρώπους που έχουν υποστεί τραυματική κάκωση νωτιαίου μυελού, για παράδειγμα μετά από τροχαία ατυχήματα. Στην Ελβετία, η συμμετοχή σε μια οργάνωση δωρητών, που διοικείται από το Ελβετικό Ίδρυμα Παραπληγικών, απαιτώντας μια μικρή ετήσια δωρεά, παρέχει στο άτομο μια ουσιαστική κάλυψη του κόστους που θα προκύψει σε περίπτωση τραυματικής κάκωσης νωτιαίου μυελού. Η συμμετοχή είναι ανοιχτή για όλους, ανεξάρτητα από τον τόπο κατοικίας, τη θέση του ατυχήματος ή της αντιμετώπισης (122). Στη Νέα Ζηλανδία, η Εταιρεία Αποζημίωσης Ατυχήματος παρέχει ολοκληρωτική, άνευ πταίσματος κάλυψη της κάκωσης του προσώπου (ανεξαρτήτως αιτίας) σε όλους τους κατοίκους της Νέας Ζηλανδίας και των επισκεπτών αυτής (123). Χρηματοδοτείται το κόστος των καυσίμων των οχημάτων και των τελών έκδοσης αδειών κυκλοφορίας από εισφορές ανθρώπων, από μισθοδοσίες επιχειρήσεων, καθώς και μέσω άλλων κυβερνητικών χρηματοδοτήσεων. Δεδομένου ότι υπάρχουν πολλές αιτίες που προκαλούν ΚΝΜ, άλλοι μηχανισμοί πρέπει να εξασφαλίσουν την προστασία των ανθρώπων από χρηματοοικονομικούς κινδύνους που συνδέονται με τη χρήση των υπηρεσιών υγείας και αποκατάστασης. Λόγω των υψηλών δαπανών που σχετίζονται με ΚΝΜ, μια οικονομικά προσιτή ασφάλιση υγείας είναι απαραίτητη για την ελαχιστοποίηση της άμεσης ανάγκης πληρωμής στο σημείο της φροντίδας. Τα συστήματα ασφάλισης αναπηρίας μπορούν να παρέχουν μια αρκετά ασφαλή και ικανοποιητική κατάσταση υποστήριξης στις υπηρεσίες και στα άτομα με ειδικές ανάγκες (παράδειγμα (124). Η διεθνής συνεργασία είναι απαραίτητη, καθώς πολλές αναπτυσσόμενες χώρες δεν διαθέτουν τους πόρους που απαιτούνται για τη δημιουργία εξειδικευμέ116
νων υπηρεσιών σε άτομα με ΚΝΜ. Το άρθρο 32 της σύμβασης για τα Δικαιώματα των ΑμεΑ υπογραμμίζει την ανάγκη να λάβουν τα συμβαλλόμενα κράτη μέτρα με τα άλλα κράτη μέλη, μαζί με τους διεθνείς και περιφερειακούς οργανισμούς και την κοινωνία των πολιτών, για να παρέχουν την οικονομική και την τεχνική βοήθεια που θα διευκολύνει την πρόσβαση στην υγειονομική περίθαλψη, την αποκατάσταση και τις υποστηρικτικές τεχνολογίες (21).
Έρευνα Αναδυόμενες θεραπείες Έρευνα σχετικά με την ιατρική περίθαλψη και την αποκατάσταση της ΚΝΜ πραγματοποιούνταν επί δεκαετίες και είχε ως αποτέλεσμα πολλά οφέλη που επέτρεψαν στα άτομα με ΚΝΜ να διατηρήσουν το υψηλό επίπεδο ποιότητας ζωής τους και να ζουν όσο ο γενικός πληθυσμός. Υπήρξαν αξιοσημείωτες καινοτομίες στην υποστηρικτική τεχνολογία, οι οποίες ωφέλησαν εκείνους τους ανθρώπους με ΚΝΜ που μπορούσαν να έχουν πρόσβαση σε αυτά. Για παράδειγμα, εξελίξεις στην τεχνολογία των αμαξιδίων σημαίνει, ότι οι ανάγκες των ατόμων με ΚΝΜ αντιμετωπίζονται καλύτερα, χάρη στην κλίση και στους μηχανισμούς ανάκλισης και ανύψωσης των ποδιών με στηρίγματα για την ευθυγραμμισμένη στάση, τη λειτουργία (συμπεριλαμβανομένης της φυσιολογικής λειτουργία), τη σπαστικότητα, τις συσπάσεις, τη διαχείριση της πίεσης, την άνεση και για άλλα θέματα (125). Η ανάπτυξη του εικονικού περιβάλλοντος και της ρομποτικής (126, 127), καθώς επίσης και της τεχνολογίας των υπολογιστών, όπως για παράδειγμα η χρήση του λόγου και οι κινήσεις των ματιών στην πληκτρολόγηση ή η εισαγωγή εναλλακτικών πληκτρολόγιων (128, 129), συνέβαλαν στο να διευκολυνθεί η αποκατάσταση και η συμμετοχή των ατόμων σε δραστηριότητες καθημερινής ζωής. Έρευνα πάνω στο νευρολογικό έλεγχο των συσκευών είχε ως αποτέλεσμα την ανάπτυξη όπλων, των πρόσθετων μελών, έτσι ώστε οι άνθρωποι να μπορούν να κινούνται με τη σκέψη, για να κάνουν ότι θέλουν (120). Αρκετές θεραπείες για την κάκωση νωτιαίου μυελού αρχίζουν να αναδύονται. Ορισμένες από αυτές τις θεραπείες βρίσκονται σε πειραματικό στάδιο στα ζώα,
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
ενώ άλλες είναι σε προκλινικό στάδιο της έρευνας και κάποιες θεραπείες που παρουσιάζουν δυναμική βρίσκονται ήδη στο στάδιο της εφαρμογής τους και στους ανθρώπους (130-133). Θεραπείες, όπως θεραπεία με βλαστοκύτταρα είναι εξαιρετικά αμφιλεγόμενες, λόγω ποικίλων θεμάτων που προκύπτουν έναντι της επιστήμης, της ασφάλειας και της ηθικής (βλέπε Πλαίσιο 5.4.). Παρά τις προσπάθειες των ερευνητών, δεν υπάρχουν σήμερα γνωστές θεραπείες, ικανές να αποκαταστήσουν και να ανασκευάσουν τη βλάβη νωτιαίου μυελού. Ερευνητές στη βιοϊατρική μοιράζονται γενικά την πεποίθηση ότι είναι πιθανό στο μέλλον ένας συνδυασμός νέων θεραπειών με την υπάρχουσα υγεία και αποκατάσταση να επιτύχει πραγματική και ουσιαστική πρόοδο ως προς την αποκατάσταση ή την ανακατασκευή του νωτιαίου μυελού (133). Οι άνθρωποι με κά-
κωση νωτιαίου μυελού και οι οικογένειές τους που αναζητούν νέες θεραπείες αποβλέποντας με ελπίδα στη θεραπεία, ας γνωρίζουν την πολυπλοκότητα και την αβεβαιότητα στον τομέα αυτό. Θα πρέπει να ενθαρρύνονται, να ζητούν συμβουλές από ποικίλες πηγές, συμπεριλαμβανομένων των κλινικών εμπειρογνωμόνων, των αξιόπιστων ερευνητών και των ατόμων με κάκωση νωτιαίου μυελού που μπορεί να έχουν εμπειρίες σε ορισμένες από αυτές τις θεραπείες.
Άλλες έρευνες Δεν είναι διαθέσιμα επαρκή στοιχεία για τα πιο κατάλληλα μοντέλα παροχής υπηρεσιών σε άτομα με ΚΝΜ. Περαιτέρω έρευνα των υπηρεσιών υγείας απαιτείται για να καθοριστούν τα ποσοστά πρόσβασης (19) και να εντοπιστούν τα οικονομικά αποδοτικά και δίκαια
Πλαίσιο 5.4. Θεραπεία με βλαστοκύτταρα: ελπίδα ή παραπλανητική διαφήμιση; Η ανακάλυψη των βλαστοκυττάρων του νευρικού συστήματος και η ταχεία πρόοδος της βιολογίας τους έχουν αυξήσει την ελπίδα, ότι οι θεραπείες με βλαστικά κύτταρα θα μπορούσαν να συμβάλουν στην ανάκαμψη σοβαρών νευρολογικών παθήσεων, συμπεριλαμβανομένων της ΚΝΜ. Αυτές οι ανακαλύψεις έχουν δημιουργήσει επίσης μια επιχειρηματική ευκαιρία, γνωστή ως "τουρισμό βλαστικών κυττάρων", με λιγότερο ρυθμιζόμενες δικαιοδοσίες στους επιχειρηματίες να πουλήσουν τις θεραπείες με τα βλαστοκύτταρα στα άτομα με σοβαρές ασθένειες που είναι απελπισμένοι για την όποια θεραπεία. Τέτοιου είδους θεραπείες δεν έχουν ελεγχθεί και αξιολογηθεί διεξοδικά σε κατάλληλα σχεδιασμένες κλινικές μελέτες, ούτε τους δόθηκε έγκριση από αναγνωρισμένους φορείς, όπως από τις Εταιρείες Τροφίμων και Φαρμάκων των Ηνωμένων Πολιτείων. Πολλές μεταβλητές έχουν συμβάλει στην ταχεία ανάπτυξη του τουρισμού των βλαστικών κυττάρων (134). Αυτές περιλαμβάνουν τις υπάρχουσες επιτυχείς χρήσεις των θεραπειών με βλαστοκύτταρα σε αιματολογικές ασθένειες όπως στη λευχαιμία. Έτσι, οι επιχειρηματίες με πρόσβαση στις εγκαταστάσεις κλινικής-ποιότητας επεξεργασίας των κυττάρων μπορεί να προετοιμάσουν και να παραδώσουν τα κύτταρα για μια ποικιλία αναπόδεικτων ενδείξεις. Επιπλέον, η πρόσβαση στο Διαδίκτυο έχει δημιουργήσει πρωτόγνωρες ευκαιρίες διαφήμισης (135), καθώς και η διαθεσιμότητα των θεραπειών σε χώρες, όπως η Κίνα και η Ινδία, έχει αυξησει τον ιατρικό τουρισμό (136). Επιχειρηματίες των βλαστικοκυττάρων υποστηρίζουν ότι τα άτομα με ΚΝΜ στερούνται αποτελεσματικής θεραπείας λόγω απαγορευτικών ρυθμιστικών απαιτήσεων, υπερβολικά επιφυλακτικών επιστημόνων και άκαμπτων ερευνητικών σχεδίων, συμπεριλαμβανομένης της τυχαίας επιλογής και του ελέγχου (137). Ωστόσο, εκτός από ανέκδοτες αναφορές, οι επιχειρηματίες έχουν συμβάλει ελάχιστα στα ζωτικής σημασίας στοιχεία που πρέπει να συλλέγχθούνπροτού τα βλαστικά κύτταρα χρησιμοποιηθούν με ασφάλεια και αποτελεσματικότητα. Ολοκληρωμένη μακροχρόνια παρακολούθηση για να προσδιοριστούν τα πραγματικά αποτελέσματα των θεραπειών, συνήθως λείπει. Όταν η θεραπεία με βλαστοκύτταρα πραγματοποιείται συγχρόνως μαζί με την αποκατάσταση, είναι δύσκολο να προσδιοριστεί αν τα βλαστικά κύτταρα ή η αποκατάσταση είναι υπεύθυνα για οποιεσδήποτε λειτουργικές βελτιώσεις. Μία από τις πρώτες σημαντικά δημοσιευμένες εργασίες για τον τουρισμό βλαστικών κυττάρων είχαν σχέση με τις νευρολογικές εξετάσεις πριν και μετά την άμεση εμφύτευση εμβρυϊκών κυττάρων στο νωτιαίο μυελό σε άτομα με ΚΝΜ (138). Σε επόμενες εκθέσεις από αυτή την πειραματική διαδικασία Κινέζων ερευνητών φαίνεται να έχουν προσπαθήσει να διευκρινίσουν ποια άτομα μπορούν να επωφεληθούν από τη διαδικασία μεταμόσχευσης (139). Σοβαρές επιπλοκές που συμβαίνουν μετά τη μεταμόσχευση εμβρυϊκών βλαστικών κυττάρων έχουν περιγραφεί (140). Πολλές μη κερδοσκοπικοί και κρατικοί φορείς προέβησαν σε δηλώσεις που περιγράφουν τους κινδύνους του τουρισμού των βλαστικών κυττάρων και δημιούργησαν εκπαιδευτικά εργαλεία για τους ανθρώπους με κάκωση νωτιαίου μυελού και τις οικογένειές τους, για να υπολογίσουν όλες τις προεκτάσεις, πριν υποβληθούν σε θεραπεία βλαστοκυττάρων. συνεχίζεται....
117
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
συνέχεια....
Βασικές αρχές αναδυόμενων συζητήσεων περιλαμβάνουν: οι κλινικές πειραματικές ελέτες δεν πρέπει ποτέ να συνδέονται με πληρωμή από τους ασθενείς και τις οικογένειές τους, οι θεραπείες χρειάζεται να είναι επαρκώς χαρακτηρισμένες, τα φαρμακολογικά ή τοξικολογικά στοιχεία πρέπει να τελειοποιηθούν για να καθορίσουν τα αναγκαία αποδεικτικά στοιχεία της ασφάλειας και της αποτελεσματικότητας, και ένας βασικός δείκτης ότι μια θεραπεία βλαστικών κυττάρων είναι αμφισβητήσιμη είναι όταν μια μοναδική θεραπεία διαφημίζεται για την αποτελεσματικότητά της σε ένα φάσμα ασθενειών (141). Υπάρχει ο κίνδυνος, η νόμιμη έρευνα των βλαστικών κυττάρων να γίνει απαξιωτικά λόγω των απατεώνων ερευνητών που προσφέρουν αβάσιμες θεραπείες. Ως αποτέλεσμα του αυξημένου ελέγχου της κυβέρνησης, κάποιες κλινικές βλαστοκυττάρων έχουν κλείσει, συμπεριλαμβανομένων και ορισμένων που παρουσίαζαν σοβαρές ανεπιθύμητες ενέργειες (142), ενώ σε άλλες έχουν επιβληθεί πρόστιμα για δόλια διαφήμιση. Εκπαιδευτικἐς πληροφορίες είναι τώρα διαθέσιμες να συμβουλεύσουν τα άτομα σχετικά με τους κινδύνους των θεραπειών αυτών (143), και ιδιαίτερη προσοχή χρειάζεται ως προς τα ηθικά προβλήματα και τις δυσκολίες που προκύπτουν στο πλαίσιο της παρανόησης των θεραπειών κατά την ενημέρωση και τη συγκατάθεση (130). Οι προσπάθειες βρίσκονται σε εξέλιξη για τη διάκριση έγκυρης ιατρικής καινοτομίας από την αβάσιμη εφαρμογή των βλαστικών κυττάρων ως τις θεραπείες (144, 145). Παρ 'όλα αυτά, η πρόκληση μιας πιθανής θεραπείας είναι ένα ισχυρό κίνητρο, ειδικά όταν συνδυάζεται με ανέκδοτες αναφορές αξιοσημείωτων αλλαγών σε ασθενείς. Έτσι, τα άτομα με ΚΝΜ μπορούν να συνεχίσουν να αγοράζουν την ελπίδα που υποσχονται θεραπείες (146) μέχρι ισχυρά επιστημονικές επικυρωμένες θεραπείες για την οξεία και τη χρόνια ΚΝΜ γίνουν μια πραγματικότητα.
μοντέλα υπηρεσιών για τη βελτίωση της πρόσβασης. Τεκμηριωμένες κατευθυντήριες γραμμές χρειάζονται επίσης από ένα ευρύ φάσμα ενδιαφερομένων φορέων, συμπεριλαμβανομένων και των ατόμων με ΚΝΜ, του προσωπικού υγείας, των κυβερνήσεων και των οργανισμών χρηματοδότησης. Χωρίς αυτές τις κατευθυντήριες γραμμές, το προσωπικό υγείας και όλοι οι άλλοι θα έχουν περιορισμένη ικανότητα να προχωρήσουν σε καλά ενημερωμένες κλινικές αποφάσεις σχετικά με τις κατάλληλες παρεμβάσεις και δεν θα είναι σε θέση να υποστηρίξουν και να ενισχύσουν τους ανθρώπους με Κακώσεις Νωτιαίου Μυελού σε αυτές τις επιλογές που σχετίζεται με τη φροντίδα τους. Στον τομέα της υποστηρικτικής τεχνολογίας, υπάρχουν αυτή τη στιγμή, πολύ λίγα εμπειρικά στοιχεία όσον αφορά τις επιπτώσεις της πάνω στην ανάρρωση για τους ανθρώπους με ΚΝΜ (147, 148). Χωρίς τα αποτελέσματα της έρευνας της υποστηρικτικής τεχνολογίας στα άτομα με ΚΝΜ, θα είναι δύσκολο να προσδιοριστεί τι λειτουργεί, πόσο καλά λειτουργεί, και για ποίους θα λειτουργήσει.
βοηθητικών συσκευών). Βάσει των στοιχείων που παρουσιάστηκαν σε αυτό το κεφάλαιο, οι ακόλουθες συστάσεις πρέπει να εξεταστούν. Ένα ευρύ φάσμα ενδιαφερόμενων φορέων διαδραματίζουν σημαντικό ρόλο και θα πρέπει να ζητείται η γνώμη τους στις προσπάθειες που γίνονται να εφαρμοστούν αυτές οι συστάσεις.
Ηγεσία και διακυβέρνηση ■ Να προβούν σε λεπτομερή ανάλυσης της κατάστασης για να παρέχουν μια βάση για βιώσιμο εθνικό σχεδιασμό. ■ Να αναπτύξουν ή να αναθεωρήσουν τις εθνικές πολιτικές και τα σχέδια, σύμφωνα με την ανάλυση της κατάστασης, με τα καλύτερα διαθέσιμα ερευνητικά δεδομένα και με τις βέλτιστες πρακτικές. ■ Να αναπτύξουν συνεργασίες με άλλους συναφείς τομείς (π.χ. την εκπαίδευση, την απασχόληση, τις μεταφορές, τους κοινωνικούς τομείς) για να αυξηθεί η πιθανότητα βελτίωσης της υγείας των ατόμων με ΚΝΜ. ■ Να επιδοθούν σε πολιτικό διάλογο με τους βασικούς ενδιαφερόμενους φορείς για να επωφεληθούν από τα δεδομένα της έρευνας και από τη γνώση, την εμπειρία και τις απόψεις των ανθρώπων που εμπλέκονται ή επηρεάζονται από τις μελλοντικές πολιτικές αποφάσεις. ■ Οι πολυμερείς και διμερείς χορηγοί πρέπει να πα-
Συμπεράσματα και συστάσεις Αυτό το κεφάλαιο παρουσίασε σε μια ευρεία επισκόπηση τους τρόπους με τους οποίους τα συστήματα υγείας μπορούν δυναμικά να ενισχυθούν για να εξασφαλιστεί στα άτομα με ΚΝΜ να μπορούν να έχουν πρόσβαση στις υπηρεσίες υγείας που χρειάζονται (συμπεριλαμβανομένης της αποκατάστασης και των 118
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
ρέχουν επαρκή χρηματοοικονομική και τεχνική υποστήριξη στις αναπτυσσόμενες χώρες, μέσω της βιώσιμης και διαφανούς διεθνούς συνεργασίας.
Η παροχή υπηρεσιών ■ Ένας χάρτης με τις υπάρχουσες υπηρεσίες που αφορούν τα άτομα με ΚΝΜ να εντοπίζει εμπόδια στην πρόσβαση και την ενίσχυση της ικανότητας των εν λόγω υπηρεσιών, αποφεύγοντας την επανάληψη ή τη δημιουργία παράλληλων υπηρεσιών. ■ Επιβεβαίωση ότι τα κατάλληλα συστήματα είναι σε θέση να παρέχουν υπηρεσίες στα άτομα με ΚΝΜ. Όταν οι πόροι είναι επαρκείς αυτό θα πρέπει να περιλαμβάνει την πρόσβαση σε εξειδικευμένες υπηρεσίες. Σε λιγότερο εύπορες καταστάσεις, θα πρέπει να αναπτυχθούν μονάδες ΚΝΜ ή εξειδικευμένες ομάδες μέσα στα γενικά νοσοκομεία. Σε όλες τις συνθήκες, τα συστήματα πρέπει να ενεργοποιηθούν για να εξασφαλιστεί η συνεχής αντιμετώπιση και καθοδήγηση των ατόμων όταν παίρνουν εξιτήριο στην κοινότητα. ■ Καθιέρωση αποτελεσματικών συστημάτων επικοινωνίας και παραπομπής για να εξασφαλιστεί ο συντονισμός μεταξύ των τριών φάσεων της ιατρικής φροντίδας: (i) της προνοσοκομειακής και οξείας ιατρικής περίθαλψης, (ii) της μετά την οξεία φάση ιατρικής φροντίδας και αποκατάστασης και (iii) της συντήρησης της υγείας. ■ Κινητοποίηση των ατόμων με κάκωση νωτιαίου μυελού και των μελών της οικογένειάς τους, μιλώντας τους ως συνεργάτες στην παροχή υπηρεσιών. Να τους παρέχετε πληροφορίες και να τους συμπεριλάβετε στη διαδικασία λήψης αποφάσεων, σχεδιασμού, καθορισμού στόχων, παρακολούθησης και αξιολόγησης.
■ Να ενισχυθούν τα υπάρχοντα προγράμματα κατάρτισης για να εξασφαλιστεί η επαρκής κάλυψη της ΚΝΜ και της υποστηρικτικής τεχνολογίας. ■ Να υποστηριχθούν ευκαιρίες για συνεχιζόμενη επαγγελματική εξέλιξη τόσο στο προσωπικό αποκατάστασης όσο και στο προσωπικό υγειονομικής περίθαλψης. ■ Να αξιοποιηθούν οι μη επαγγελματίες υγείας, όπως ομοιοπαθείς πάσχοντες, για να βοηθήσουν στην παροχή ενός ολοκληρωμένου φάσματος υπηρεσιών υγειονομικής περίθαλψης και αποκατάστασης. ■ Να εξασφαλιστεί στα μέλη της οικογένειας, καθώς και στα ίδια τα άτομα με ΚΝΜ, η παροχή ευκαιριών για εκπαίδευση και υποστήριξη.
Τεχνολογίες υγείας ■ Καθιέρωση καθαρών και δίκαιων κατευθυντήριων γραμμών επιλογής για να επιτρέψει στους ανθρώπους με Κακώσεις Νωτιαίου Μυελού να έχουν πρόσβαση σε υποστηρικτική τεχνολογία. ■ Προσδιορισμός χρηματικά αποδοτικών μοντέλων για την παροχή υποστηρικτικής τεχνολογίας. ■ Επιβεβαίωση ότι οι υπηρεσίες υποστηρικτικής τεχνολογίας ανταποκρίνονται στις ατομικές ανάγκες, επιτρέπουν την επιλογή και ανταποκρίνονται στη γήρανση και στις άλλες καταστάσεις που φέρνουν αλλαγές της ζωής των ατόμων. ■ Ανοχή στους παραγωγούς της τοπικής κοινωνίας με χαμηλά εισοδήματα, έτσι ώστε με την υποστηρικτική τεχνολογία να συνεισφέρουν σε εθνικά πρότυπα για την ιατρική τεχνολογία μαζί με διεθνείς επιχειρηματικές ομάδες.
Ενημέρωση για την υγεία ■ Επιβεβαίωση ότι τα κατάλληλα και τυποποιημένα συστήματα πληροφοριών υγείας είναι σε θέση να συλλέξουν δεδομένα για τις υπηρεσίες υγείας. ■ Συλλογή και ανάλυση δεδομένων για τα αίτια της κάκωσης, σε συνδυασμό με τα κλινικά δεδομένα, τη διαχείριση και τη βελτίωση, για να ενημερωθούν τα άτομα και οι υπηρεσίες για τον προγραμματισμό και τη λήψη αποφάσεων.
Ανθρώπινοι πόροι ■ Να προωθηθεί η πρόσβαση σε εξειδικευμένη εκπαίδευση από κατάλληλα εκπαιδευμένους ιατρούς φυσικής ιατρικής και αποκατάστασης, εργοθεραπευτές, φυσικοθεραπευτές, τεχνικούς προσθετικών και ορθωτικών βοηθημάτων, λογοθεραπευτές, μηχανικούς αποκατάστασης και προσωπικού για τα αναπηρικά αμαξίδια.
119
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Χρηματοδότηση και προσιτό κόστος ■ Διάθεση επαρκών κονδυλίων για εξειδικευμένες υπηρεσίες στα άτομα με ΚΝΜ. ■ Διασφάλιση ότι τα κατάλληλα συστήματα ασφάλισης προ και μετά του τραυματισμού μπορούν να προστατεύσουν τους ανθρώπους με βάση το κόστος της κάκωσης. ■ Διασφάλιση ότι τα άτομα με ΚΝΜ μπορούν να έχουν πρόσβαση σε ολοκληρωμένη και οικονομικά προσιτή ασφάλιση υγείας. ■ Ανάπτυξη διεθνών εταιρικών σχέσεων για να διασφαλιστεί τεχνική και οικονομική βοήθειας για τη στήριξη των υπηρεσιών στα άτομα με κάκωση νωτιαίου μυελού σε μακροπρόθεσμη βάση.
Έρευνα ■ Υποστήριξη της εφαρμογής των αυστηρώς τεκμηριωμένων δεδομένων της έρευνας. ■ Διάδοση αντικειμενικών πληροφοριών σχετικά με τις νέες εξελίξεις στην φροντίδα της ΚΝΜ στους ενδιαφερόμενους φορείς, συμπεριλαμβανομένων των ατόμων με ΚΝΜ και των οικογενειών τους. ■ Διεξαγωγή έρευνας των συστημάτων υγείας για να προσδιοριστούν τα ποσοστά πρόσβασης στις υπηρεσίες υγείας και αποκατάστασης, καθώς και να εντοπιστούν τα πιο οικονομικά σε απόδοση και αποτελεσματικά μοντέλα παροχής υπηρεσιών. ■ Διασφάλιση ότι οι τεκμηριωμένες από έρευνα οδηγίες είναι διαθέσιμες και χρησιμοποιούνται από το προσωπικό υγειονομικής περίθαλψης και αποκατάστασης.
Βιβλιογραφία 1. 2. 3. 4. 5. 6. 7. 8. De Savigny D, Adam T. Systems thinking for health systems strengthening. Geneva, World Health Organization/Alliance for Health Policy and Systems Research, 2009. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf, accessed 12 April 2012). Iezzoni LI et.al. Mobility impairments and use of screening and preventive services. American Journal of Public Health, 2000, 90:955961. doi: http://dx.doi.org/10.2105/AJPH.90.6.955 PMID:10846515 Iezzoni LI, O’Day BL. More than ramps. A guide to improving health care quality and access for people with disabilities. New York, NY, Oxford University Press, 2006. Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary out-reach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 2001, 15:600-606. doi: http://dx.doi.org/10.1191/0269215501cr453oa PMID:11777090 Munce SEP et.al. Physician utilization among adults with traumatic spinal cord injury in Ontario: a population-based study. Spinal Cord, 2009, 47:470-476. doi: http://dx.doi.org/10.1038/sc.2008.173 PMID:19153588 Dryden DM et.al. Utilization of health services following spinal cord injury: a 6-year follow-up study. Spinal Cord, 2004, 42:513-525. doi: http://dx.doi.org/10.1038/sj.sc.3101629 PMID:15249928 Laursen B, Helweg-Larsen K. Health service use in adults 20–64 years with traumatic brain injury, spinal cord injury or pelvic fracture. A cohort study with 9-year follow-up. BMJ Open, 2012, 2:e001521. doi: http://dx.doi.org/10.1136/bmjopen-2012-001521 PMID:23103605 McColl MA et al. Primary care for people with SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3. Vancouver, SCIRE, 2010 (pp. 1−24) (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). van Loo MA et.al. Care needs of persons with long-term spinal cord injury living at home in the Netherlands. Spinal Cord, 2010, 48:423-428. doi: http://dx.doi.org/10.1038/sc.2009.142 PMID:19884896 Eide AH et al. Living conditions among people with activity limitation in Zimbabwe: a representative regional survey. Oslo, SINTEF, 2003. Eide AH, van Rooy G, Loeb ME. Living conditions among people with ac-tivity limitations in Namibia: a representative national study. Oslo, SINTEF, 2003.
9. 10. 11. 12.
120
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
13. 14. 15. 16. 17. 18. 19. 20. 21. 22.
23. 24. 25. 26.
27.
28. 29. 30. 31. 32. 33.
34.
Loeb ME, Eide AH, editors. Living conditions among people with activity limitations in Malawi: a national representative study. Oslo, SINTEF, 2004. Eide A, Loeb M. Living conditions among people with activity limitations in Zambia: a national representative study. Oslo, SINTEF, 2006. Eide AH, Kamaleri Y. Living conditions among people with disabilities in Mozambique: a national representative study. Oslo, SINTEF, 2009. Cott CA. Client-centred rehabilitation: client perspectives. Disability and Rehabilitation, 2004, 26:1411-1422. doi: http://dx.doi.org/10.1080/09638280400000237 PMID:15764361 Whalley Hammell K. Experience of rehabiltiation following spinal cord injury. Spinal Cord, 2007, 45:260-274. PMID:17310257 WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disability and Rehabilitation, 2003, 25:487-490. doi: http://dx.doi.org/10.1080/0963828031000071723 PMID:12745944 Post MWM et.al. Services for spinal cord injured: availability and satisfac-tion. Spinal Cord, 1997, 35:109-115. doi: http://dx.doi.org/10.1038/sj.sc.3100362 PMID:9044519 United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/disabilities-convention.htm, accessed 9 May 2012). South-North Centre for Dialogue and Development. Global survey of gov-ernment actions on the implementation of thestandard rules of the equalization of opportunities for persons with disabilities. Amman, Office of the United Nations Special Rapporteur on Disabilities, 2006:1−141. Dejong G et.al. The organization and financing of health services for per-sons with disabilities. The Milbank Quarterly, 2002, 80:261301. doi: http://dx.doi.org/10.1111/1468-0009.t01-1-00004 PMID:12101873 China Disabled Persons’ Federation. Law on the Protection of Persons with Disabilities, 10 April 2008 (http://www.cdpf.org.cn/english/law/content/2008-04/10/content_84949.htm, accessed 20 May 2012). Chen J et.al. eds. Inter–province transfer of 10,373 patients injured in Wenchuan earthquake. Journal of Evidence-Based Medicine, 2009, 2:270-276. doi: http://dx.doi.org/10.1111/j.1756-5391.2009.01053.x PMID:21349026 Li Y et.al. Evaluation of functional outcomes of physical rehabilitation and medical complications in spinal cordinjury victims of the Sichuan earthquake. Journal of Rehabilitation Medicine, 2012, 44:534-540. doi: http://dx.doi.org/10.2340/16501977-1005 PMID:22674233 Hu X et.al. Analysis of functional status, quality of life and community in-tegration in earthquake survivors with spinal cordinjury at hospital discharge and one-year follow-up in the community. Journal of Rehabilitation Medicine, 2012, 44:200-205. doi: http://dx.doi.org/10.2340/16501977-0944 PMID:22367060 WHO. Prehospital trauma care systems. Geneva, World Health Organiza-tion, 2005. ESCIF. European Spinal Cord Injury Federation (ESCIF) web page. Nottwil, Switzerland, European Spinal Cord Injury Federation, 2012 (http://www.escif.org/, accessed 20 March 2012). Aito S. Complications during the acute phase of traumatic spinal cord le-sions. Spinal Cord, 2003, 41:629-635. doi: http://dx.doi.org/10.1038/sj.sc.3101513 PMID:14569264 Bagnall AM et al. Spinal fixation surgery for acute traumatic spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (1):CD004725. PMID:18254059 Chappell P, Wirz S. Quality of life following spinal cord injury for 20–40 year old males living in Sri Lanka. Asia PacificνDisability Rehabilitation Journal, 2003, 14:162-178. De Vivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and cause of death among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1411-1419. doi: http://dx.doi.org/10.1016/S0003- 9993(99)90252-6 PMID:10569435 Burns AS, Ditunno JF. Establishing prognosis and maximising functional outcomes after spinal cord injury: a review of current and future directions in rehabilitation management. Spine, 2001, 26 Suppl:S137-S145. doi: http://dx.doi. org/10.1097/00007632200112151-00023 PMID:11805621
121
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
35. 36. 37.
38. 39. 40. 41. 42. 43. 44.
45.
46. 47.
48.
49.
50. 51. 52. 53. 54.
Fromovich-Amit Y et.al. Properties and outcomes of spinal rehabilitation units in four countries. Spinal Cord, 2009, 47:597- 603. doi: http://dx.doi.org/10.1038/sc.2008.178 PMID:19172151 Illis LS. The case for specialist units. Spinal Cord, 2004, 42:443-446. doi: http://dx.doi.org/10.1038/sj.sc.3101633 PMID:15197413 Kiekens C et al. Organisation and financing of musculoskeletal and neurological rehabilitation in Belgium: KCE reports 57S. Brussels, Belgian Health Care Knowledge Centre, 2007 (https://kce.fgov.be/sites/default/files/page_documents/ d20071023020.pdf, accessed 20 March 2012). New PW. A multidisciplinary consultation team to address the unmet needs of hospitalized spinal cord injury patients. Archives of Neurology, 2010, 67:1074-1076. doi: http://dx.doi.org/10.1001/archneurol.2010.204 PMID:20837850 New PW. Non-traumatic spinal cord injury: what is the ideal setting for re-habilitation? Australian Health Review, 2006, 30:353-361. doi: http://dx.doi.org/10.1071/AH060353 PMID:16879094 Priebe MM et.al. Spinal cord injury medicine: economic and societal is-sues in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl 1:S84-S88. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.005 PMID:17321854 Scivoletto G, Morganti B, Molinari M. Early versus delayed inpatient spinal cord injury rehabilitation: an Italian study. Arcives of Physical Medicine and Rehabilitation, 2005, 86:512-516. doi: http://dx.doi.org/10.1016/j.apmr.2004.05.021 PMID:15759237 Smith M. Efficacy of specialist versus non-specialist management of spi-nal cord injury within the UK. Spinal Cord, 2002, 40:10-16. doi: http://dx.doi.org/10.1038/sj.sc.3101226 PMID:11821964 New PW et.al. International comparison of the organisation of rehabilita-tion services and systems of care for patients with spinal cord injury. Spinal Cord, 2012, 51:33-39. PMID:22801190 van Langeveld SA et.al. Comparing content of therapy for people with a spinal cord injury in postacute inpatient rehabilitation in Australia, Norway, and the Netherlands. Physical Therapy, 2011, 91:210-224. doi: http://dx.doi.org/10.2522/ ptj.20090417 PMID:21212372 Borg J, Lindström A, Larsson S. Assistive technologies in developing countries: national and international responsibilities to implement the Convention on the Rights of Persons with Disabilities. Lan-cet, 2009, 374:1863-1865. doi: http://dx.doi.org/10.1016/S01406736(09)61872-9 PMID:19944867 LaVela SL et.al. Geographical proximity and health care utilization in vet-erans with SCI&D in the USA. Social Science & Medicine, 2004, 59:2387-2399. doi: http://dx.doi.org/10.1016/j.socscimed.2004.06.033 PMID:15450711 Middleton JW et.al. Issues and challenges for development of a sustaina-ble service model for people with spinal cord injury living in rural regions. Archives of Physical Medicine and Rehabilitation, 2008, 89:1941-1947. doi: http://dx.doi. org/10.1016/j.apmr.2008.04.011 PMID:18929022 Grabois EW et.al. Accessibility of primary care physicians’ offices for peo-ple with disabilities: and analysis of compliance with the Americans with Disabilities Act. Archives of Family Medicine, 1999, 8:44-51. doi: http://dx.doi.org/10.1001/archfami. 8.1.44 PMID:9932071 Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/oti.228 PMID:17624872 Pearlman J et.al. Lower-limb prostheses and wheelchairs in low-income countries. IEEE Engineering in Medicine and Biology Magazine, 2008, 27:12-22. doi: http://dx.doi.org/10.1109/EMB.2007.907372 PMID:18463017 Pearlman J et.al. Design, development and testing of a low-cost electric powered wheelchair for India. Disability and Rehabilitation. Assistive Technology, 2009, 4:42-57. doi: http://dx.doi.org/10.1080/17483100802338440 PMID:19172480 Goodwin JS et.al. Epidemiology of Medicare abuse: the example of power wheelchairs. Journal of the American Geriatrics Society, 2007, 55:221-226. doi: http://dx.doi.org/10.1111/j.1532-5415.2007.01063.x PMID:17302658 Bergström AL, Samuelsson K. Evaluation of manual wheelchairs by indi-viduals with spinal cord injuries. Disability and Rehabilitation. Assistive Technology, 2006, 1:175-182. doi: http://dx.doi.org/10.1080/17483100600573230 PMID:19260185 May LA et.al. Wheelchair back-support options: functional outcomes for persons with recent spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1146-1150. doi: http://dx.doi.org/10.1016/j.apmr.2003.08.105 PMID:15241766
122
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
55. 56. 57.
58. 59. 60. 61. 62. 63. 64. 65. 66. 67. 68. 69. 70.
71.
72. 73. 74. 75. 76.
Kittel A, Di Marco A, Stewart H. Factors influencing the decision to aban-don manual wheelchairs for three individuals with a spinal cord injury. Disability and Rehabilitation, 2002, 24:106-114. doi: http://dx.doi. org/10.1080/09638280110066785 PMID:11827144 Mukherjee G, Samanta A. Wheelchair charity: a useless benevolence in community-based rehabilitation. Disability and Rehabilitation, 2005, 27:591-596. doi: http://dx.doi.org/10.1080/09638280400018387 PMID:16019868 Oderud T et al. User satisfaction survey: an assessment study on wheel-chairs in Tanzania. In: Sheldon S, Jacobs NA, eds. Report of a consensus conference on wheelchairs for developing coun-tries, Bengaluru, India, 6–11 November 2006. Copenhagen, International Society for Prosthetics and Orthotics, 2007 (pp. 112–117). New PW, Simmonds F, Stevermuer T. Comparison of patients managed in specialised spinal rehabilitation units with those managed in non-specialised rehabilitation units. Spinal Cord, 2011, 49:909-916. doi: http://dx.doi.org/10.1038/sc.2011.29 PMID:21468042 Divanoglou A, Seiger A, Levi R. Acute management of traumatic spinal cord injury in a Greek and a Swedish region: a prospective, population-based study. Spinal Cord, 2010, 48:477-482. doi: http://dx.doi.org/10.1038/sc.2009.160 PMID:20029396 Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord, 2003, 41:303-309. doi: http://dx.doi.org/10.1038/sj.sc.3101443 PMID:12714994 Soopramanien A et.al. Using telemedicine to provide post-discharge sup-port for patients with spinal cord injuries. Journal of Telemedicine and Telecare, 2005, 11 Suppl 1:68-70. doi: http://dx.doi.org/10.1258/1357633054461633 PMID:16036001 Dallolio L et.al. Functional and clinical outcomes of telemedicine in pa-tients with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:2332-2341. doi: http://dx.doi.org/10.1016/j.apmr.2008.06.012 PMID:19061746 Young-Hughes S, Simbarti L. Spinal cord injury/disorder teleconsultation outcome study. Rehabilitation Nursing, 2011, 36:153158. doi: http://dx.doi.org/10.1002/j.2048-7940.2011.tb00083.x PMID:21721396 Burns RB et.al. Using telerehabilitation to support assistive technology. Assistive Technology, 1998, 10:126-133. doi: http://dx.doi.org/10.1080/10400435.1998.10131970 PMID:10339280 WHO. Increasing access to health workers in remote and rural areas through improved retention. Geneva, World HealthOrganization, 2010. Warf BC, Wright EJ, Kulkarni AV. Factors affecting survival of infants with myelomeningocele in southeastern Uganda.Journal of Neurosurgery Pediatrics, 2011, 7:127-133. doi: http://dx.doi.org/10.3171/2010.11.PEDS10428 PMID:21284456 WHO. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. Brown-Triolo DL et.al. Consumer perspectives on mobility: implications for neuroprosthesis design. Journal of Rehabilitation Research and Development, 2002, 39:659-669. PMID:17943668 New Zealand Spinal Trust. Resources and information. web site. Christ-church, New Zealand, New Zealand Spinal Trust, 2012 (http://www.nzspinaltrust.org.nz/library_resources_info.asp, accessed 12 April 2012). Sherman JE, DeVinney DJ, Sperling KB. Social support and adjustment after spinal cord injury: influence of past peermentoring experiences and current live-in partner. Rehabilitation Psychology, 2004, 49:140-149. doi: http://dx.doi. org/10.1037/00905550.49.2.140 Ljungberg I et.al. Using peer mentoring for people with spinal cord injury to enhance self efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 2011, 20:351-358. doi: http://dx.doi.org/10.1111/j.1365- 2702.2010.03432.x PMID:21219518 Motivation UK. web site, Bristol, United Kingdom, Freedom through mobility, 2012 (http://www.motivation.org.uk, accessed 17 April 2012). Horton R. A new epoch for health professionals’ education. Lancet, 2010, 376:1875-1877. doi: http://dx.doi.org/10.1016/S01406736(10)62008-9 PMID:21112621 WHO. Everybody’s business: strengthening health systems to improve health outcomes. Geneva, World HealthOrganization, 2007. Long TM et.al. Training needs of pediatric occupational therapists in as-sistive technology. The American Journal of Occupational Therapy, 2007, 61:345-354. doi: http://dx.doi.org/10.5014/ajot.61.3.345 PMID:17569392 Gitlow L, Sanford T. Assistive technology education needs of allied health professionals in a rural state. Journal of Allied Health, 2003, 32:46-51. PMID:12665293
123
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
77. 78. 79. 80. 81. 82. 83. 84. 85.
86. 87. 88. 89. 90. 91. 92. 93.
94. 95. 96. 97. 98.
Bachman S et.al. Provider perceptions of their capacity to offer accessible health care for people with disabilities. Journal of Disability Policy Studies, 2006, 17:130-136. doi: http://dx.doi.org/10.1177/10442073060170030101 Donnelly C et.al. Utilization, access and satisfaction with primary care among people with spinal cord injuries: a comparison of three countries. Spinal Cord, 2007, 45:25-36. doi: http://dx.doi.org/10.1038/sj.sc.3101933 PMID:16733520 Neri MT, Kroll T. Understanding the consequences of access barriers to health care: experiences of adults with disabilities. Disability and Rehabilitation, 2003, 25:85-96. PMID:12554383 Scheer J et.al. Access barriers for persons with disabilities: the consum-er’s perspective. Journal of Disability Policy Studies, 2003, 13:221-230. doi: http://dx.doi.org/10.1177/104420730301300404 WHO. Framework for action on interprofessional education and collaborative practice. Geneva, World Health Organization, 2010. eLearnSCI. Modules [web site], 2012 (http://www.elearnsci.org/, accessed 20 May 2012). SCIPT. International Network of SCI Physiotherapists web site. Interna-tional Network of SCI Physiotherapists, 2012 (http://www.scipt.org/, accessed 12 April 2012). ISCoS. International Spinal Cord Society web site, Aylesbury, United Kingdom, 2012 (http://www.iscos.org.uk/, accessed 20 March 2012). Nwankwo OE, Katchy A. Outcome of a 12 week programme for manage-ment of the spinal cord injured with participationof patient’s relations at Hilltop Orthopaedic Hospital, Enugu, Nigeria. Spinal Cord, 2003, 41:129-133. doi: http://dx.doi. org/10.1038/sj.sc.3101410 PMID:12595877 Vitality. Vital change for spinal cord injury in Development Nations [web page]. London, United Kingdom, 2012 (http:// www.vitalchange.org.uk/vitality/, accessed 12 April 2012). WHO. Essential health technologies [web page]. Geneva, Switzerland, WHO, 2012 (http://www.who.int/eht/en/, accessed 12 April 2012). Pearlman J et.al. Towards the development of an effective technology transfer model of wheelchairs to developing countries. Disability and Rehabilitation. Assistive Technology, 2006, 1:103-110. doi: http://dx.doi. org/10.1080/09638280500167563 PMID:19256173 Jefferds AN et.al. Current state of mobility technology provision in less-resourced countries. Physical Medicine and Rehabilitation Clinics of North America, 2010, 21:221-242. doi: http://dx.doi.org/10.1016/j.pmr.2009.07.011 PMID:19951788 Copley J, Ziviani J. Barriers to the use of assistive technology for children with multiple disabilities. Occupational Therapy International, 2004, 11:229-243. doi: http://dx.doi.org/10.1002/oti.213 PMID:15771212 Phillips B, Zhao H. Predictors of assistive technology abandonment. As-sistive Technology, 1993, 5:36-45. doi: http://dx.doi.org/10.1080/10400435.1993.10132205 PMID:10171664 Scherer MJ. Outcomes of assistive technology use on quality of life. Disa-bility and Rehabilitation, 1996, 18:439-448. doi: http://dx.doi.org/10.3109/09638289609165907 PMID:8877302 Hunt PC et.al. Demographic and socioeconomic factors associated with disparity in wheelchair customizability among people with traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1859-1864. doi: http://dx.doi.org/10.1016/j.apmr.2004.07.347 PMID:15520982 Glumac LK et.al. Guatemalan caregivers’ perceptions of receiving and using wheelchairs donated for their children. Pediatric Physical Therapy, 2009, 21:167-175. doi: http://dx.doi.org/10.1097/PEP.0b013e3181a34a2b PMID:19440126 Mobility without Barriers Foundation web site, Burlington, USA, Mobility without Barriers, 2012 (http://www.worldmobility.org/, accessed 17 April 2012). Cooper RA et.al. Advances in electric-powered wheelchairs. Topics in Spinal Cord Injury Rehabilitation, 2006, 11:15-29. doi: http://dx.doi.org/10.1310/ACUK-KFYP-ABEQ-A30C Enable NSW. Guidelines for the prescription of a seated wheelchair or mobility scooter for people with a traumatic brain injuryor spinal (http://www.lifetimecare.nsw.gov.au//Spinal_Cord_Injury.aspx, accessed 27 February 2011). Lindstrom A. Appropriate technologies for assistive devices in low-income counties. In: Hsu JD, Michael JW, Fisk JR. AAOS atlas of orthoses and assistive devices. Philadelphia, PA, Mosby Elsevier, 2008.
124
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
99.
100. 101. 102. 103. 104. 105. 106. 107. 108. 109. 110. 111. 112.
113. 114.
115. 116. 117.
118. 119. 120.
Romanian Academic Society (SAR). Imobilizat sau integrat? Statul si accesul la echipamente de mobilitate si la servicii de viata independenta. Isolated or included? The state and access to mobility equipments and independent living services. November 2010, p.1(http://www.motivation.ro/uploads/studii%20SAR/Policy%20brief%20Imobilizat%20sau%20integrat%209%20nov%202010.p df accessed 29 May 2012) MRF. Motivation Romania Foundation. Accessibility map. web site (http://www.accesibil.org, accessed 24 April 2013). MRF. Motivation Romania Foundation, 2012 web site (http://www.motivation.ro/en, accessed 24 April 2013). WHO. Wheelchair service training package. Geneva, World Health Or-ganization, 2013 (http://www.who.int/disabilities/publications/technology/wheelchair/training/en, accessed 27 April 2013). Assistive Technology Act. United States Congress 2004 (Public Law 108–364) (http://www.ataporg.org/summaryact.html, accessed 2 August 2011). Beck R. Enable Ireland: action on disability. Dublin, Enable Ireland, 2008 (http://www.enableireland.ie, accessed 20 April 2013). Cripps RA et.al. A global map for traumatic spinal cord injury epidemiol-ogy: towards a living data repository for injury prevention. Spinal Cord, 2011, 49:493-501. doi: http://dx.doi.org/10.1038/sc.2010.146 PMID:21102572 Biering-Sørensen F et.al. The International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi.org/10.1038/sj.sc.3101930 PMID:16955072 Cardenas DD et.al. Etiology and incidence of re-hospitalization after traumatic spinal cord injury: a multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2004, 85:1757-1763. doi: http://dx.doi.org/10.1016/j.apmr.2004.03.016 PMID:15520970 De Vivo M et.al. International spinal cord injury core data set. Spinal Cord, 2006, 44:535-540. doi: http://dx.doi.org/10.1038/sj.sc.3101958 PMID:16955073 Kreuger H. Spinal cord injury: progress in care and outcomes in the last 25 years. Vancouver, The Rick Hansen Institute, 2011. Stover SL et.al. History, implementation and current status of the Na-tional Spinal Cord Injury Database. Archives of Physical Medicine and Rehabilitation, 1999, 80:1365-1371. doi: http://dx.doi.org/10.1016/S0003-9993(99)90246-0 PMID:10569429 Bates I et.al. Indicators of sustainable capacity building for health re-search: analysis of four African case studies. Health Research Policy and Systems, 2011, 9:14. doi: http://dx.doi.org/10.1186/1478-4505-9-14 PMID:21443780 Tate DG, Boninger ML, Jackson AB. Future directions for spinal cord in-jury research: recent developments and model systems contributions. Archives of Physical Medicine and Rehabilitation, 2011, 92:509-515. doi: http://dx.doi.org/10.1016/j. apmr.2010.07.243 PMID:21353833 Whiteneck G, Gassaway J. SCIRehab: a model for rehabilitation re-search using comprehensive person, process and outcome data. Disability and Rehabilitation, 2010, 32:1035-1042. doi: http://dx.doi.org/10.3109/09638281003775584 PMID:20392171 Whiteneck GG et.al. Inpatient and postdischarge rehabilitation services provided in the first year after spinal cord injury: findings from the SCIRehab study. Archives of Physical Medicine and Reha-bilitation, 2011, 92:361-368. doi: http://dx.doi. org/10.1016/j.apmr.2010.07.241 PMID:21353820 Yazdizadeh B, Majdzadeh R, Salmasian H. Systematic review of meth-ods for evaluating healthcare research economic impact. Health Research Policy and Systems, 2010, 8:6. doi: http://dx.doi.org/10.1186/1478-4505-8-6 PMID:20196839 Gertler P et al. Impact evaluation in practice. Washington, DC, The Inter-national Bank for Reconstruction and Development/The World Bank, 2011. Whiteneck GG et.al. Quantifying environmental factors: a measure of physical, attitudinal, service, productivity and policy barriers. Archives of Physical Medicine and Rehabilitation, 2004, 85:1324-1335. doi: http://dx.doi.org/10.1016/j. apmr.2003.09.027 PMID:15295760 Craig A et.al. The efficacy and benefits of environmental control systems for the severely disabled. Medical Science Monitor, 2005, 11:RA32-RA39. PMID:15614204 Kawu AA et.al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:11341137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 Field MJ, Jette AM. The future of disability in America. Washington, DC, The National Academies Press, 2007.
125
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
121. May-Teerink T. A survey of rehabilitative services and people coping with physical disabilities in Uganda, East Africa. International Journal of Rehabilitation Research, 1999, 22:311-316. doi: http://dx.doi.org/10.1097/00004356-199912000- 00008 PMID:10669981 122. Swiss Paraplegic Foundation (http://www.paraplegie.ch/en/pub/gv/become_a_member.cfm, accessed 24 April 2013). 123. ACC. Accident Compensation Corporation web site. Wellington, New Zealand, Accident Compensation Corporation, 2012 (http://www.acc.co.nz, accessed 17 April 2012). 124. NDIS. National Disability Insurance Scheme web site, Canberra, Australia, NDIS, 2012 (http://www.ndis.gov.au/, accessed 17 April 2012). 125. Dicianno BE et.al. RESNA position on the application of tilt, recline, and elevating leg rests for wheelchairs. Assistive Technology, 2009, 21:13-22. doi: http://dx.doi.org/10.1080/10400430902945769 PMID:19719059 126. Crespo LM, Reinkensmeyer DJ. Effect of robotic guidance on motor learning of a timing task. Paper presented at BioRob 2008. Second IEEE, RAS & EMBS International Conference on Biomedical Robotics and Biomechatronics, 19−22 October 2008 (http://ieeexplore.ieee.org/xpl/mostRecentIssue.jsp?punumber=4753967, ac-cessed 12 April 2012). 127. Atkins MS et.al. Mobile arm supports: evidence-based benefits and crite-ria for use. The Journal of Spinal Cord Medicine, 2008, 31:388-393. PMID:18959356 128. Chin CA. Integrated electromyogram and eye-gaze tracking cursor con-trol system for computer users with motor disabilities. Journal of Rehabilitation Research and Development, 2008, 45:161-174. doi: http://dx.doi.org/10.1682/ JRRD.2007.03.0050 PMID:18566935 129. Sesin A et.al. Adaptive eye-gaze tracking using neural-network-based user profiles to assist people with motor disability. Journal of Rehabilitation Research and Development, 2008, 45:801-818. doi: http://dx.doi.org/10.1682/ JRRD.2007.05.0075 PMID:19009467 130. Amador MJ, Guest JD. An appraisal of ongoing experimental procedures in human spinal cord injury. Journal of Neurologic Physical Therapy; JNPT, 2005, 29:70-86. PMID:16386164 131. Fehlings MG, Baptiste D. Current status of clinical trials for acute spinal cord injury. Injury, 2005, 36 Suppl 2:B113-B122. doi: http://dx.doi.org/10.1016/j.injury.2005.06.022 PMID:15993112 132. Baptiste DC, Fehlings M. Update on the treatment of spinal cord injury. Progress in Brain Research, 2007, 161:217-233. doi: http://dx.doi.org/10.1016/S0079-6123(06)61015-7 PMID:17618980 133. Thuret S, Moon LD, Gage F. Therapeutic interventions after spinal cord injury. Nature Reviews. Neuroscience, 2006, 7:628-643. doi: http://dx.doi.org/10.1038/nrn1955 PMID:16858391 134. Regenberg AC et.al. Medicine on the fringe: stem cell-based interven-tions in advance of evidence. Stem Cells (Dayton, Ohio), 2009, 27:2312-2319. doi: http://dx.doi.org/10.1002/stem.132 PMID:19544406 135. Ryan KA et.al. Tracking the rise of stem cell tourism. Regenerative Med-icine, 2010, 5:27-33. doi: http://dx.doi.org/10.2217/rme.09.70 PMID:20017692 136. Song P. Biotech pilgrims and the transnational quest for stem cell cures. Medical Anthropology, 2010, 29:384-402. doi: http://dx.doi.org/10.1080/01459740.2010.501317 PMID:21082484 137. Devereaux M, Loring JF. Growth of an industry: how U.S. scientists and clinicians have enabled stem cell tourism. The American Journal of Bioethics, 2010, 10:45-46. doi: http://dx.doi.org/10.1080/15265161003769005 PMID:20461650 138. Dobkin BH, Curt A, Guest J. Cellular transplants in China: observational study from the largest human experiment in chronic spinal cord injury. Neurorehabilitation and Neural Repair, 2006, 20:5-13. doi: http://dx.doi.org/10.1177/1545968305284675 PMID:16467274 139. Huang H et.al. Influence factors for functional improvement after olfactory ensheathing cell transplantation for chronic spinal cord injury. [Chinese Journal of Reparative and Reconstructive Sur-gery] Zhongguo Xiu Fu Chong Jian Wai Ke Za Zhi, 2006, 20:434-438. PMID:16683451 140. Amariglio N et.al. Donor-derived brain tumor following neural stem cell transplantation in an ataxia telangiectasia patient. PLoS Medicine, 2009, 6:e1000029. doi: http://dx.doi.org/10.1371/journal.pmed.1000029 PMID:19226183
126
Κεφάλαιο 5
Ενδυνάμωση των συστημάτων υγείας
141. Huang H et.al. Olfactory ensheathing cells transplantation for central nervous system diseases in 1,255 patients. [Chinese Journal of Reparative and Reconstructive Surgery]Zhongguo Xiu Fu Chong Jian Wai Ke Za Zhi, 2009, 23:14-20. PMID:19192871 142. Cyranoski D. Korean deaths spark inquiry. Nature, 2010, 468:485. doi: http://dx.doi.org/10.1038/468485a PMID:21107396 143. Dolan T. A three-pronged management strategy to stem cell tourism. The American Journal of Bioethics, 2010, 10:43-45. doi: http://dx.doi.org/10.1080/15265161003754056 PMID:20461649 144. Hyun I. Allowing innovative stem cell-based therapies outside of clinical trials: ethical and policy challenges. The Journal of Law, Medicine & Ethics, 2010, 38:277-285. doi: http://dx.doi.org/10.1111/j.1748-720X.2010.00488.x PMID:20579251 145. Lindvall O, Hyun I. Medical innovation versus stem cell tourism. Science, 2009, 324:1664-1665. doi: http://dx.doi.org /10.1126/science.1171749 PMID:19556497 146. Caplan A, Levine B. Hope, hype and help: ethically assessing the grow-ing market in stem cell therapies. The AmericanJournal of Bioethics, 2010, 10:24-25. doi: http://dx.doi.org/10.1080/15265161.2010.481980 PMID:20461638 147. Fuhrer MJ. Assistive technology outcomes research: challenges met and yet unmet. American Journal of Physical Medicine & Rehabilitation, 2001, 80:528-535. doi: http://dx.doi.org/10.1097/00002060-200107000-00013 PMID:11421522 148. Reid D, Lailberte-Rudman D, Hebert D. Impact of wheeled seated mobili-ty devices on adult users’ and their caregivers’ occupational performance: a critical literature review. Canadian Journal of Occupational Therapy, Revue Canadienne d’Ergothérapie, 2002, 69:261280. doi: http://dx.doi.org/10.1177/000841740206900503 PMID:12501452
127
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
128
Κεφάλαιο 6 Συμπεριφορές, σχέσεις και προσαρμογή
129
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
"Ως χρήστες αναπηρικού αμαξιδίου, συχνά προκαλούμε μία συγκεκριμένη περιέργεια μεταξύ των μη-ανάπηρων, με την έννοια ότι πολύ αναρωτιούνται γιατί ένα σώμα που μοιάζει "φυσιολογικό" βρίσκεται καθισμένο πάνω σε ένα αναπηρικό αμαξίδιο. Σύντομα δράτουν κάποια ευκαιρία να ξεκινήσουν μία συζήτηση λέγοντας: "Εύχομαι να γίνεις καλά σύντομα!" και συνεχίζουν με την ερώτηση: "Ήταν ατύχημα;". Ο παρατηρητής θα ακούσει την ιστορία του ατόμου στο αναπηρικό αμαξίδιο, θα συνειδητοποιείσει ότι αυτό το άτομο με το σώμα που φαίνεται ικανό στην πραγματικότητα δεν μπορεί να ορθοστατήσει, θα νοιώσει ειλικρινή λύπη και τότε θα γυρίσει από την άλλη και θα φύγει. Καθώς θα φεύγει, θα είναι ευγνώμων που δεν είναι αυτός που περνάει αύτό το "δράμα". Θα περπατήσει ταχύτερα και θα σκεφτεί: "Ο μεγαλύτερος φόβος μου στη ζωή είναι να γίνω αναπηρος". Και όμως, αυτός ο στιγμιαίος εφιάλτης για τον παρατηρητή μπορεί να είναι ένα συνηθισμένο στιγμιότυπο της ευτυχισμένης αλλά όχι και τόσο εύκολης ζωής του χρήστη του αναπηρικού αμαξιδίου". (Bulent, Τουρκία) "Η συμπεριφορά τους με κάνει πολύ δυστυχισμένο. Προέρχεται από τους μύθους και τα πιστεύω τους. Και ναι η κάκωση του νωτιαίου μυελού μου συνέβη από ατύχημα, αλλά οι άνθρωποι στην Σαμόα δεν είναι όλοι μορφωμένοι – μόνο το 8%. Όλοι πρέπει να δουλεύουν, οπότε σε βλέπουν ως "χαμένο χρόνο" επειδή το μόνο που κάνεις είναι να κάθεσαι. Ειδικά επειδή στην ηλικία στην οποία βρίσκομαι – θα έπρεπε να δουλεύω σκληρά για την οικογένειά μου και δεν το κάνω – οπότε είμαι άχρηστος. Η προσωπική φροντίδα είναι πολύ δύσκολη στην Σαμόα. Η σύζυγός σου θα είναι ο κύριος φροντιστής αλλά είσαι τυχερός εάν έχεις και μητέρα. Χωρίς μία σύζηγο ή μητέρα θα πρέπει να μείνεις στο νοσοκομείο. Η οικογένεια δεν θα σε πάρει πίσω στο σπίτι. Δεν υπάρχουν γνώσεις. Δεν υπάρχει εξοπλισμός. Είμαι τυχερός που η σύζηγός μου με αγαπάει πάρα πολύ". (Pene, Σαμόα) "Απέκτησα ένα τραυματισμό του νωτιαίου μυελού στο επίπεδο Θ10 όταν ήμουν πολύ νέα και το να χρησιμοποιώ αναπηρικό αμαξίδιο ήταν ένα φυσικό κομμάτι της ζωής μου. Μεγαλώνοντας σε ένα αγροτικό κομμάτι των ΗΠΑ, ένοιωθα άνετα με τον εαυτό μου και είχα μία πολύ θετική αυτοεκτίμηση. Όμως δεν ήμουν ποτέ σίγουρη εάν θα βρω έναν σύντροφο και συχνά απογοητευόμουν επειδή δεν είχα τόσα ραντεβού όπως οι φίλες μου. Τώρα, είμαι ερωτευμένη, έχω μία σταθερή σχέση και σχεδιάζουμε να παντρευτούμε το ερχόμενο έτος. Κοιτώντας προς τα πίσω, συνειδητοποιώ ότι οι μόνοι περιορισμοί που πραγματικά αντιμετώπισα είναι αυτοί που εγώ η ίδια έβαλα στον εαυτό μου εξαιτίας της έλλειψης αυτοπεποίθησης σχετικά με τα ραντεβού και την σεξουαλικότητα. Ως γυναίκα με αναπηρία, έπρεπε να είμαι ακόμη πιο ανοικτή, ευθής, ειλικρινής και σίγουρη με τους άντρες γιατί υπήρχαν πολλές ερωτήσεις συνυφασμένες με την διαδικασία, όπως: "Πώς θα γίνει αυτό; ή "Μπορείς να κάνεις σεξ;". Όταν αυτές οι ερωτήσεις απαντιόνταν, τότε τα πράγματα προχωρούσαν φυσιολογικά όπως θα γινόταν σε οποιαδήποτε σχέση!" (Cheri, ΗΠΑ) "Λάμβανα 25 ώρες την εβδομάδα βοήθεια για διάφορες διαδικασίες. Έχω λίγους επαγγελματίες (νοσηλεύτες) με τους οποίους έχω καλή χημεία και από τους οποίους μπορώ να ζητήσω να με συνοδεύσουν όταν σχεδιάζω ένα ταξίδι. Πάντα σχεδιάζω καλά και οργανώνω ένα ευχάριστο ταξίδι, έτσι ώστε ο βοηθός μου να έχει μία θετική εμπειρία όταν με συνοδεύει. Είμαι πολύ ευχαριστημένος με αυτού του ειδικού τύπου "προσωπικό βοηθό". (Kjell, Νορβηγία) 130
Συμπεριφορές, σχέσεις και προσαρμογή Η στάση και η συμπεριφορά των μελών της οικογένειας, των φίλων, των φροντιστών, των γειτόνων και των αγνώστων συντελούν τους περιβαλλοντικούς παράγοντες που επηρεάζουν τις ζωές των ανθρώπων με κάκωση νωτιαίου μυελού (ΚΝΜ) είτε σαν εμπόδιο, είτε σαν διευκόλυνση (1). Την ίδια στιγμή, ο βαθμός στον οποίο τα άτομα με ΚΝΜ είναι ικανά να προσαρμοστούν στην κατάστασή τους, ο οποίος με την σειρά του σχετίζεται με τα δικά τους πιστεύω και αντιλήψεις, μπορεί επίσης να επηρεάσει την στάση και την συμπεριφορά των άλλων στο κοινωνικό τους δίκτυο (2). Για πολλά άτομα με ΚΝΜ, ο σεβασμός και η αποδοχή που εκφράζεται από την οικογένεια, τους φίλους, τους γείτονες, τους συναδέλφους και τους ειδικούς φροντιστές – ειδικά αυτές οι κοινωνικές σχέσεις που μειώνουν το άγχος και τον φόβο – είναι ισχυρές θετικές δυνάμεις που μπορούν να βοηθήσουν και να κάνουν την προσαρμογή στην ΚΝΜ δυνατή (3). Η βοήθεια και η υποστήριξη που παρέχεται από μη ανάπηρα άτομα, καθώς και η ομότιμη βοήθεια από άλλα άτομα με αναπηρία, αποτελεί ζωτική βοήθεια για πολλά άτομα με αναπηρία. Στην Σύμβαση των Δικαιωμάτων των Ατόμων με Αναπηρία (CRPD), στο Άρθρο 3 (Γενικές Αρχές) τονίζεται η σημασία του σεβασμού, της αξιοπρέπειας, της αυτονομίας, της διαφορετικότητας και της αποδοχής των ατόμων με αναπηρία σαν μέρος της ανθρώπινης ποικιλομορφίας και της ανθρωπιάς (4). Ειδικά Άρθρα της Σύμβασης που αφορούν τις συμπεριφορές και τις κοινωνικές σχέσεις περιλαμβάνουν: ■ Άρθρο 8 Ευαισθητοποίηση ■ Άρθρο 19 Ζώντας ανεξάρτητα και όντας μέλος της κοινωνίας ■ Άρθρο 23 Σεβασμός στο σπίτι και την οικογένεια ■ Άρθρο 30 Συμμετοχή στην πολιτιστική ζωή, την αναψυχή, τον ελεύθερο χρόνο και τα αθλήματα. Άλλα άρθρα, όπως το Άρθρο 26, "Habilitation and Rehabilitation" τονίζουν παράγοντες υψηλής σημασίας στην προώθηση θετικών σχέσεων. Αυτό το κεφάλαιο ανασκοπεί τις συμπεριφορές και τις σχέσεις που δομούν τις ζωές των ατόμων με ΚΝΜ. Αναφέρεται στην ένταξη στην ευρύτερη κοινωνία όπως επίσης και τη στάση των επαγγελματιών της υγείας. Εξετάζει την πρόβλεψη βοήθειας και υποστήριξης – επίσημα θεσμική και φροντίδα στο σπίτι, ανεπίσημη απλήρωτη φροντίδα από την οικογένεια και φίλους, και ελεγχόμενη από τον χρήστη επί πληρωμή προσωπική βοήθεια. Στη συνέχεια, το κομμάτι για τις οικογενειακές σχέσεις αναλύει τις σχέσεις και τη βοήθεια από τους γονείς, τους συζύγους και τα παιδιά. Τέλος, το κεφάλαιο εξετάζει πως τα άτομα προσαρμόζονται στην ΚΝΜ και χτίζουν μία θετική αυτοεκτίμηση. Σε κάθε παράγραφο, ένα πρόβλημα ακολουθείται από παραδείγματα παρεμβάσεων και στοιχειοθέτηση της αποτελεσματικότητας στη βελτίωση της κατάστασης. 131
6
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Συμπεριφορές Στάση της ευρύτερης κοινωνίας Πολιτισμικές αναπαραστάσεις των συμπεριφορών ως προς την αναπηρία επηρεάζουν κάθε κοινωνική επαφή στις ζωές των ατόμων με αναπηρία (5). Το επίμονο κοίταγμα, η αποφυγή, η αντίδραση με στερεότυπα και η περιθωριοποίηση είναι συμπεριφορές που εκδηλώνουν αρνητική στάση (6-8). Οι περιορισμοί λόγω συμπεριφοράς μπορεί να είναι τόσο ανασταλτικοί όσο και τα σωματικά όρια (9). Πολλοί άνθρωποι χωρίς αναπηρία αγνοούν την πραγματικότητα της ζωής των ατόμων με αναπηρία. Αντιθέτως, βασίζουν την στάση τους σε στερεότυπα και αρνητικές εικόνες (10, 11). Τυπικά, η αναπηρία σχετίζεται με την εξάρτηση και την παθητικότητα, και σε μερικούς πολιτισμούς σχετίζεται με μαγεία, αμαρτία και κακό "κάρμα" (12). Ακόμη και όταν τα άτομα χωρίς αναπηρία αποφεύγουν αυτές τις προκαταλήψεις, η αναπηρία θεωρείται ασυμβίβαστη με μία καλή ποιότητα ζωής. Για παράδειγμα, ο γενικός πληθυσμός θεωρεί την τετραπληγία χειρότερη από τον θάνατο (13, 14). Μία μελέτη από την Κένυα για οικογένειες με παιδιά με δισχιδή ράχη ανέδειξε ότι μόνο έξι από τις σαράντα οικογένειες βρίσκουν την κοινωνία τους πολύ υποστηρικτική, επτά έχουν απομονωθεί, ενώ οι εννιά ένοιωθαν ότι ήταν καταραμένοι εξαιτίας της γέννησης ενός ανάπηρου παιδιού (15). Στο Μπαγκλαντές, ακόμη και τα μέλη της ίδιας της οικογένειας έχουν αρνητική στάση και χαμηλές προσδοκίες για τους συγγενείς τους με αναπηρία (16). Η συμπεριφορά των άλλων μπορεί επίσης να αποτελεί μία θετική δύναμη. Μία έρευνα πάνω σε αυτούς που διευκολύνουν και σε αυτούς που βάζουν όρια στα άτομα με κινητική αναπηρία στις ΗΠΑ, έδειξε ότι η στάση της οικογένειας, των φίλων και των προσωπικών βοηθών είχε μία μεγάλη θετική επιρροή στην ανάρρωση, ενώ η στάση των ιατρών και των θεραπευτών θεωρούνταν ως εμπόδιο στην λήψη υγειονομικής περίθαλψης (17). Παρόλα αυτά, αυτό μπορεί να διαφέρει ανάλογα με την βαρύτητα του τραυματισμού: μία καναδική μελέτη βρήκε ότι ενώ περίπου τα δύο τρίτα των ατόμων με ΚΝΜ με άριστη υγεία αναγνώριζαν ότι η συμπεριφορά της οικογένειας τους και των φίλων τους διευκόλυνε την κοινωνική τους συμμετοχή, 25% από αυτούς με προβλήματα υγείας θεωρούσαν 132
την στάση της οικογένειας και των φίλων ως εμπόδιο στην κοινωνική τους συμμετοχή (18). Οι άνθρωποι μπορεί να μην γνωρίζουν ποια είναι μία θετική στάση απέναντι στα άτομα με ΚΝΜ (19). Μπορεί να υποθέτουν, για παράδειγμα, ότι τα άτομα με ΚΝΜ θέλουν ειδική μεταχείριση και αντιδρούν ανάλογα. Εναλλακτικά, μπορεί να αντιλαμβάνονται την ανεξαρτησία ανάλογα με τι δραστηριότητες μπορεί να κάνει ένα άτομο με ΚΝΜ και όχι ως κάτι που προκύπτει από το να έχει κανείς τον έλεγχο της ζωής του. Έρευνες σε άτομα με ΚΝΜ έχουν δείξει ότι αντιλαμβάνονται την ζωή τους πιο θετικά από ότι οι επαγγελματίες υγείας καθώς και από τον γενικό πληθυσμό (19-21).
Διευθέτηση εμποδίων Η επαφή με άτομα με αναπηρία βελτιώνει τις συμπεριφορές (22). Γενικά, όσο πιο πολύ τα άτομα με ΚΝΜ πηγαίνουν σε κοινά σχολεία, ταξιδεύουν με τα δημόσια μέσα μεταφοράς, ζουν σε συνηθισμένες γειτονιές και δουλεύουν σε κοινές θέσεις εργασίας, τόσο πιο πολύ τα παιδιά και οι ενήλικες χωρίς αναπηρία θα μάθουν να τους κατανοούν και να τους σέβονται ως τμήμα της διαφορετικότητας της κοινωνίας (23). Όταν ιδιωτικά σπίτια, μπαρ, εστιατόρια και πολιτιστικοί χώροι γίνονται πιο προσβάσιμα, τα άτομα με αναπηρία μπορεί να συμμετέχουν σε κοινωνικές συγκεντρώσεις και δραστηριότητες αναψυχής τείνοντας έτσι να βελτιώσουν τις συμπεριφορές. Στοχευμένες παρεμβάσεις – όπως η εκπαίδευση για την ισότητα/επίγνωση της αναπηρίας σε παρόχους φροντίδας – μπορεί να μειώσει την αρνητική στάση και να αυξήσει την κατανόηση (24, 25). Παρεμβάσεις στις τάξεις – όπως η επίσκεψη ατόμων πρότυπα με αναπηρία – μπορούν να βελτιώσουν την επίγνωση και την κατανόηση των παιδιών (26–28). Η παρουσία περισσότερων διαφορετικών και θετικών προτύπων αναπηρίας στα μέσα ενημέρωσης μπορεί επίσης να επηρεάσει τις συμπεριφορές (29), και την ατομική γνώση – και οι μεμονωμένες προσπάθειες ενημέρωσης ευοδώνονται από την κάλυψη των μέσων ενημέρωσης κατά τη διάρκεια σημαντικών εκδηλώσεων (events), όπως μας δείχνει το παράδειγμα από την Αϊτή στον Πίνακα 6.1. Δράσεις από τις κυβερνήσεις να προωθήσουν την επίγνωση του CRPD θα μειώσουν τις αρνητικές συμπεριφορές προς την αναπηρία και θα προωθήσουν την αποδοχή.
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
Πίνακας 6.1
Αλλάζοντας συμπεριφορές στην Αϊτή
Ενώ η αρχική ιατρική φροντίδα απαιτούσε την υποστήριξη των ασθενών με ΚΝΜ μετά τον σεισμό στις 10 Ιανουαρίου 2010 προέκυψε ένα τεράστιο θέμα, πιθανότατα η μεγαλύτερη πρόκληση για την αποκατάσταση στην Αϊτή, αυτό ήταν το θέμα της επανένταξης. Σε μία χώρα όπου οι άνθρωποι με αναπηρίες συχνά καλούνται “cocobai” – μία λέξη στην Αϊτή για το «άχρηστος» - τα κέντρα ΚΝΜ αντιμετώπισαν σημαντικές προκλήσεις στο να αλλάξουν στάσεις και να αναπτύξουν επιτυχώς προγράμματα επανένταξης. Σε μία μελέτη Διεθνούς Ταξινόμησης της Λειτουργικότητας, Αναπηρίας και Υγείας (ICF) που έλαβε χώρα στο νοσοκομείο Appeal της Αϊτής (HHA) μετά τον σεισμό, σχεδόν όλοι οι ασθενείς παρουσίασαν σοβαρά προβλήματα στην μετακίνησή τους χρησιμοποιώντας βοηθήματα και συγκοινωνία. Το περιβάλλον είχε ένα μεγάλο αντίκτυπο σε αυτούς τους περιορισμούς, αφού η περιοχή γύρω από το νοσοκομείο και οι υπαρκτές υπηρεσίες συγκοινωνίας δεν ήταν προσβάσιμες σε αναπηρικά αμαξίδια (30). Όμως, πέρα από την ανακατασκευή των υποδομών, η οποία ήταν ο κύριος στόχος των περισσότερων συστάσεων, ίσως το σπουδαιότερο εμπόδιο για χώρες όπως η Αϊτή είναι το κοινωνικό στίγμα που σχετίζεται με την αναπηρία. Από τις 62 οικογένειες στην Αϊτή που ρωτήθηκαν, οι 45 δήλωσαν ότι αντιμετώπισαν κακοποίηση ή διάκρισεις εξαιτίας της αναπηρίας του παιδιού τους, οι 39 από αυτές σε καθημερινή βάση (31). Πολιτιστικές και θρησκευτικές πεποιθήσεις συμβάλουν στις διακρίσεις, εφόσον στην Αϊτή η αναπηρία συχνά θεωρείται υπερφυσικής αιτιολογίας. Ακόμη και η καταστροφή της καλλιέργειας μπορεί να αποδοθεί σε κάποιο παιδί με αναπηρία (32). Ενώ για τις Μη Κυβερνητικές Οργανώσεις - ΜΚΟ (NGOs) η εθνική αλλαγή των υποδομών είναι γενικά πολύ ακριβή στην εφαρμογή της, οικονομικά αποδοτικές είναι οι προσπάθειες για επίτευξη πιο γρήγορων και βραχυπρόθεσμων αλλαγών. Το HHA ξεκίνησε μία καμπάνια που χρησιμοποιεί τον αθλητισμό για την προαγωγή της αποδοχής της αναπηρίας. Η παγκόσμια δημοσιότητα του αθλητισμού και η ανάπτυξη των σωματικών, κοινωνικών και οικονομικών οφελών, τον κάνουν ένα ιδανικό εργαλείο για την προώθηση της αποδοχής και του ευ ζην των ατόμων με αναπηρία (33). Η μέθοδος του HHA εστιάζει στο λαϊκό αθλητισμό, και επίσης στην ανάπτυξη του επαγγελματικού Παραολυμπισμού. Ο Leon G. έχασε την σύζυγο του και οκτώ από τα παιδιά του στον σεισμό του 2010, ενώ ο ίδιος υπέστη ΚΝΜ. Όμως, η μετέπειτα αποφασιστικότητά του να χρησιμοποιήσει την άθληση για να ξεπεράσει την αναπηρία τράβηξε την προσοχή πολλών, δίνοντας ελπίδα, κουράγιο και όραμα σε πολλούς ανθρώπους στην Cap-Haitien (την δεύτερη μεγαλύτερη πόλη της Αϊτής) βοηθώντας στην εξάλειψη του κοινωνικού στίγματος της αναπηρίας, σύμφωνα με τον Istvann Papp (Πρόεδρος της Ομάδας Μείωσης της Βίας της Κοινότητας των Ηνωμένων Εθνών της Βόρειας Αϊτής). Επιπρόσθετα η ευκαιρία για ενημέρωση των μη αναπήρων θεατών, η δημοτικότητα του χειροποδηλάτη Leon στην περιοχή του και το κατόρθωμά του να γίνει ο πρώτος ανταγωνιστικός αθλητής της Αϊτής στο χειροκίνητο ποδήλατο στους αγώνες Parapan το 2011, αποτέλεσαν μία τέλεια πρόκληση ενάντια στο στίγμα της αναπηρίας. Ο Leon έχει προβληθεί στην εθνική και διεθνή τηλεόραση, έχει μιλήσει σε δημόσιες εκδηλώσεις και υποστήριξε την προσπάθεια να μεταδοθούν οι Παραολυμπιακοί Αγώνες του 2012 για πρώτη φορά από την τηλεόραση της Αϊτής. Η ιστορία του έδειξε πως ο αθλητισμός μπορεί να υπερβεί γλωσσικά, πολιτιστικά και κοινωνικά όρια, δίδοντας μία άριστη εξέδρα για στρατηγικές αποδοχής με έναν τρόπο που οι πιο παραδοσιακές μορφές επανένταξης δυσκολεύονται να αντιμετωπίσουν (33). Ενώ η αλλαγή των φυσικών υποδομών είναι αναμφισβήτητα μία σημαντική ανάγκη, ένα έθνος χρειάζεται πρώτα να εκτιμήσει, να καταλάβει και να νοιαστεί για τις ανάγκες των ατόμων με αναπηρία πριν να είναι πιθανόν να ανταποκριθεί κατάλληλα. Μόλις οι άνθρωποι με αναπηρία αντιμετωπιστούν ως ίσοι, θα είναι ευκολότερο για εκείνους να επιτύχουν τα ανθρώπινα δικαιώματά τους, Η εμπειρία του Leon είναι μόνο ένα παράδειγμα του πως οι ατομικές ιστορίες των προσωπικών αθλητικών επιτευγμάτων μπορεί να βελτιώσουν σημαντικά τις σχέσεις και τις συμπεριφορές.
Στάση των επαγγελματιών υγείας Οι επαγγελματίες υγείας μπορεί ορισμένες φορές να είναι προκατειλημμένοι έναντι στους ανθρώπους με αναπηρία ή μπορεί να αποτύχουν να τους φροντίσουν με σεβασμό (34). Για παράδειγμα, μία μελέτη βρήκε ότι το 8.2% από τους γενικούς ιατρούς στην βόρειοδυτική Γαλλία ένοιωθε άβολα όσο αφορά τα άτομα με σωματικές βλάβες, και αυτή η στάση σχετιζόταν με μικρότερη εμπειρία, έλλειψη ιατρικής εκπαίδευσης σχετικά με την αναπηρία και ανεπαρκή χρόνο
συμβουλευτικής (35). Μία Αυστραλιανή μελέτη βρήκε ότι η συμπεριφορά των φοιτητών εργοθεραπείας δεν ήταν καθόλου καλύτερη από αυτή των φοιτητών οικονομικών (23). Μία άλλη μελέτη έδειξε ότι οι νοσηλευτές που δουλεύουν σε οξείες μονάδες ΚΝΜ είχαν πιο αρνητική συμπεριφορά σε πιο ηλικιωμένους ανθρώπους με ΚΝΜ από ότι είχαν είτε οι νοσηλευτές που δούλευαν σε κέντρα αποκατάστασης ΚΝΜ είτε άτομα με ΚΝΜ (36). Αυτό πιθανώς συμβαίνει επειδή πάντα βλέπουν άτομα σε κρίσιμη κατάσταση, που είναι σε μεγάλο βαθμό εξαρτώμενα. 133
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Αυτό το φαινόμενο μπορεί επίσης να εξηγήσει την αρνητική συμπεριφορά που βρέθηκε μεταξύ των εργαζομένων στο τμήμα επειγόντων (37) και κάποιων υπαλλήλων της αποκατάστασης (19). Αυτές οι μελέτες πραγματοποιήθηκαν κυρίως σε χώρες με υψηλό εισόδημα. Λιγότερα είναι γνωστά σχετικά με την συμπεριφορά των επαγγελματιών υγείας – στις χαμηλού και μεσαίου εισοδήματος χώρες (38), παρόλο που μία ανάλυση του Παγκόσμιου Οργανισμού Υγείας βρήκε ότι, συγκριτικά με τα άτομα χωρίς αναπηρία, οι άνθρωποι με αναπηρία είχαν διπλάσιες πιθανότητες να βρουν φροντιστές χωρίς επαρκείς δεξιότητες και εξοπλισμό που να μην καλύπτει τις ανάγκες τους, είναι τρεις φορές πιο πιθανό να τους αρνηθούν φροντίδα και τέσσερις φορές πιθανότερο να τους φερθούν άσχημα (39).
Βοήθεια και υποστήριξη Ο τίτλος βοήθεια και υποστήριξη αναφέρεται σε μη ιατρικό προσωπικό που βοηθάει τα άτομα με αναπηρία με τις δραστηριότητες της καθημερινής διαβίωσης. Ανάγκες μπορεί να προκύψουν στο σπίτι, στο σχολείο, στον χώρο εργασίας, κατά την μετακίνηση μεταξύ προορισμών, ή στις δραστηριότητες τις κοινωνικές ή της κοινότητας. Περιβαλλοντικά εμπόδια γενικά αυξάνουν την ανάγκη για βοήθεια. Η καλύτερη προσβασιμότητα και περισσότερες βοηθητικές συσκευές γενικά μειώνουν την ανάγκη για βοήθεια. Οι άνθρωποι που δεν μπορούν να λάβουν βοήθεια, ειδικότερα στα μη προσβάσιμα σημεία, μπορεί να περιοριστούν στο σπίτι, ή ακόμη και σε ένα δωμάτιο του σπιτιού. Μιλώντας γενικά, τα άτομα με πιο πολύπλοκες ανάγκες – όπως στην τετραπληγία – θα χρειαστούν περισσότερη βοήθεια από ότι τα άτομα με παραπληγία. Όπως φαίνεται στην Παγκόσμια έκθεση για την αναπηρία (39), γενικά η πλειοψηφία των αναγκών για βοήθεια και υποστήριξη για όλους τους ανθρώπους με αναπηρία εκπληρώνεται από μέλη της οικογένειας και φίλους, οι οποίοι αναφέρονται ως άτυποι φροντιστές, που είναι άμισθοι. Για τα υψηλά εισοδήματα, ή μερικές φορές για τα άτομα με υψηλά εισοδήματα που ζουν σε κοινωνίες χαμηλού εισοδήματος, η βοήθεια επί πληρωμή μπορεί να είναι διαθέσιμη. Αυτή μπορεί να παρέχεται από το κράτος, από εθελοντικούς οργανισμούς ή σε μία εμπορική βάση. Αυτό το νέο και δυναμικά πολύ ενδυναμωτικό φαινόμενο αναλύεται παρακάτω στην παράγραφο για τους προσωπικούς βοηθούς.
Αντιμετώπιση εμποδίων Οι επαγγελματίες υγείας με υποστηρικτική στάση θεωρούνταν από τα άτομα με ΚΝΜ ως βασικά για την ανάρρωσή τους, το ευ ζην τους, την αυτονομία και την ελπίδα τους (40). Βρέθηκε, για παράδειγμα, ότι η θετική στάση των ιατρών μπορεί να έχει περισσότερη επιρροή στην στάση των ασθενών προς την αναπηρία τους και την αποκατάσταση από ότι η εκπαίδευση των ασθενών ως προς τις θεραπευτικές επιλογές τους (41). Για αυτό είναι βασικό να βοηθήσουμε τους επαγγελματίες να αναπτύξουν μία θετική στάση και καλύτερη κατανόηση. Προσπάθειες για βελτίωση της στάσης των επαγγελματιών υγείας περιλαμβάνουν μέτρα όπως οι διαλέξεις και ενότητες σχετικά με τις ανάγκες υγείας και τα ανθρώπινα δικαιώματα των ατόμων με αναπηρία στις προπτυχιακές σπουδές, περιλαμβάνοντας επαφή με άτομα με αναπηρία ή με ομάδες ατόμων με αναπηρία (23, 42). Εργαστήρια και δραστηριότητες συμμετοχής μπορεί να έχουν ένα καλύτερο μακροχρόνιο αποτέλεσμα από ότι οι διαλέξεις (25). Με την πρακτική εκπαίδευση και άλλες μορφές συνεχιζόμενης εκπαίδευσης μπορεί να επηρεαστεί ο τρόπος σκέψης των ιατρών, νοσηλευτών και άλλων επαγγελματιών υγείας μετά την εξειδίκευση τους (43). Ενθαρρύνοντας την εκπαίδευση και την επιστράτευση των επαγγελματιών υγείας στην αναπηρία μπορεί επίσης να αλλάξει το επικρατές στερεότυπο ότι τα άτομα με αναπηρία είναι πάντοτε ασθενείς (44). 134
Μη επίσημη φροντίδα Μελέτες για τους μη επίσημους φροντιστές, συνήθως μέλη της οικογένειας, ερευνούν τον τύπο των δραστηριοτήτων που πραγματοποιούνται, την επίδραση στην υγεία της οικογένειας και στις σχέσεις (45, 46). Η πλειοψηφία των ενηλίκων με ΚΝΜ είναι άντρες και οι φροντιστές τους είναι πιθανότερο να είναι γυναίκες. Για παράδειγμα, μία μελέτη στη Βραζιλίας ανέδειξε ότι πάνω από 80% των φροντιστών ατόμων με τραυματική παραπληγία ήταν γυναίκες, συνήθως οι σύζυγοι ή μερικές φορές οι αδελφές, και πάνω από τους μισούς φροντιστές ήταν οι αποκλειστικοί φροντιστές (47).
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
Μία άλλη σημαντική ομάδα ανεπίσημων φροντιστών είναι οι γονείς των παιδιών και των νέων με δισχιδή ράχη ή επίκτητη ΚΝΜ: και πάλι, οι γυναίκες γενικά πραγματοποιούν την πλειοψηφία των διαδικασιών φροντίδας. Η οικογένεια και οι φίλοι μπορεί να νοιώθουν ανεκπαίδευτοι ή ανεπαρκείς για να παρέχουν την φροντίδα που απαιτείται. Άλλη έρευνα έδειξε προβλήματα απομόνωσης και έλλειψης υποστήριξης για τους φροντιστές (48). Ανάλογα με το επίπεδο των αναγκών, η υποστήριξη ενός ατόμου με ΚΝΜ μπορεί να είναι σωματικά και συναισθηματικά απαιτητική. Αυτό μπορεί να έχει ψυχολογικές συνέπειες που επηρεάζουν την ποιότητα της φροντίδας που παρέχεται. Για παράδειγμα, σύζυγοι που εκπληρώνουν ρόλο φροντιστή μπορεί να έχουν περισσότερα συμπτώματα άγχους και κατάθλιψης από ότι οι σύντροφοί τους με ΚΝΜ (46). Μία μελέτη στην Ολλανδία χρησιμοποιώντας την κλίμακα Barthel βρήκε ότι η αντιληπτή ανάγκη υποστήριξης στους συντρόφους των ατόμων με ΚΝΜ ήταν υψηλή, σχεδόν 24,8% των συντρόφων ατόμων με σοβαρή αναπηρία, σε σύγκριση με το 3,9% των συντρόφων ατόμων με ελάσσονες αναπηρίες, και συμπέρανε ότι η πρόληψη της κόπωσης των φροντιστών πρέπει να είναι μέρος της φροντίδας των ατόμων με ΚΝΜ (49). Μία Βραζιλιάνική μελέτη ανέδειξε ότι οι φροντιστές των ατόμων με παραπληγία αναφέρουν χαμηλή βαθμολογία στο SF36 κλίμακα ποιότητας ζωής, ειδικά στα πεδία σωματικού πόνου και ζωτικότητας (47). Μία μελέτη στα Φίτζι για τους φροντιστές ατόμων με ΚΝΜ ανέδειξε σημαντική κόπωση και συναισθηματική καταπόνηση των φροντιστών. Στα Φίτζι, η επί πληρωμή βοήθεια είναι σχεδόν ανύπαρκτη, με την ευρεία οικογένεια να είναι η κύρια πηγή βοήθειας για τα άτομα με ΚΝΜ. Μία μικρή μελέτη για την ποιότητα της ζωής των οικογενειών με δισχιδή ράχη στην Κένυα ανέδειξε διάχυτη κοινωνική, οικονομική, συναισθηματική και πνευματική επίδραση στους γονείς, με αυτά τα άγχη να εντείνονται όταν τα παιδιά παρουσίαζαν και ακράτεια ούρων (15).
Διευθέτηση εμποδίων Η κοινωνική υποστήριξη είναι ο παράγοντας κλειδί στις ζωές των ενηλίκων με ΚΝΜ καθώς επιστρέφουν στα σπίτια τους και στην κοινότητα μετά την ολοκλή-
ρωση της αρχικής φάσης αποκατάστασης. Στρατηγικές και προγράμματα χρειάζονται για να παρέχουν ένα ανεπίσημο δίκτυο βοηθών στα άτομα με ΚΝΜ πριν εξέλθουν από τις μονάδες αποκατάστασης έτσι ώστε να είναι ικανά να ζήσουν στην κοινωνία (51). Κατά την διάρκεια της νοσηλείας, όχι μόνο οι ασθενείς αλλά επίσης και οι οικογένειές τους θα πρέπει να συμμετέχουν στις εκπαιδευτικές δραστηριότητες (52): ανάγκες για ενημέρωση ιατρική, ψυχολογική και συναισθηματική, κοινωνική ολοκλήρωση, επαγγελματικά/οικονομικά θέματα και θέματα δραστηριοτήτων καθημερινής διαβίωσης/ αυτοφροντίδας τονίστηκαν σε αυτήν την έρευνα από τον Καναδά. Η προσαρμογή στην ΚΝΜ κατά τα πρώτα τρία χρόνια από την έναρξή της βελτιώνεται εάν η κοινωνική και εκπαιδευτική υποστήριξη παρέχεται στα μέλη της οικογένειας, και όχι μόνο στα άτομα με ΚΝΜ (53). Μία τυχαιοποιημένη ελεγχόμενη μελέτη στις ΗΠΑ βρήκε ότι οι ψυχολογικές παρεμβάσεις που στόχευαν τόσο στους φροντιστές όσο και στα άτομα με ΚΝΜ ήταν πιο αποτελεσματικές στην μείωση των συμπτωμάτων υγείας και της κοινωνικής απομόνωσης των φροντιστών (54). Οι οικογενειακές παρεμβάσεις υποστήριξης μπορεί να περιλαμβάνουν εκπαιδευτικά μαθήματα πρόσωπο με πρόσωπο για επίλυση προβλημάτων, υποστήριξη μέσω τηλεφώνου ή ομιλίες σε βίντεο, και εκπαιδευτικό υλικό. Αυτά έχουν δείξει να βελτιώνουν την λειτουργικότητα και την δυνατότητα επίλυσης προβλημάτων και σε μερικές περιπτώσεις, να μειώνουν την κατάθλιψη των φροντιστών (55, 56). Ολοκληρωμένες υπηρεσίες υποστήριξης κατά την διάρκεια της αποκατάστασης για τις οικογένειες παιδιών με τραυματισμό έχουν βρεθεί να είναι αποτελεσματικές. Αυτό περιλαμβάνει συνεργασία της μονάδας νοσηλείας, εκπαιδευτικά πρωτόκολλα, πραγματοποίηση ομάδων υποστήριξης και προγράμματα ομότιμης υποστήριξης οικογενειών (57). Τόσο παρεμβάσεις όσο και έρευνες για οικογένειες με παιδιά με δισχιδή ράχη δεν υπάρχουν (58). Η φροντίδα ανάπαυσης είναι μία κοινή λύση στις χώρες με υψηλό εισόδημα όπου τα μέλη της οικογένειας έχουν ευθύνες φροντιστή παιδιών ή μεγαλύτερων ενηλίκων με αναπηρίες και χρειάζονται ένα διάλλειμα από τις ευθύνες τους για να μειώσουν την ψυχολογική πίεση (59). Σε λιγότερο εύπορες κοινωνίες, προγράμματα αποκατάστασης βασι-
135
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
σμένα στην κοινότητα μπορεί να είναι μία σημαντική πηγή βοήθειας για τις οικογένειες με ανάπηρα παιδιά (60,61). Οι εθελοντικοί οργανισμοί είναι μία άλλη πηγή βοήθειας. Γονείς στο Μπαγκλαντές αναφέρουν πλεονεκτήματα από την συνάντηση με άλλους γονείς ενώ βρισκόταν σε κάποιο κέντρο αποκατάστασης (16). Σε μία μελέτη στην Κένυα για τις οικογένειες παιδιών με δισχιδή ράχη, τα τρία τέταρτα των οικογενειών είχαν υποστηριχθεί από κάποιον από την εκκλησία τους, και οι μισοί από αυτούς γνώριζαν άλλες οικογένειες με ανάπηρα παιδιά, που υποδεικνύει ότι πηγές ομότιμης βοήθειας και υποστήριξης είναι διαθέσιμες (15). Παρόλα αυτά, η γεωγραφική κάλυψη τόσο των Μη Κυβερνητικών Οργανώσεων - ΜΚΟ (NGOs) όσο και των προγραμμάτων αποκατάστασης βασισμένων στην κοινότητα παραμένει αποσπασματική.
Επίσημη φροντίδα Οι υπηρεσίες επίσημης βοήθειας και υποστήριξης καλύπτουν διαφορετικούς τομείς, συμπεριλαμβανομένων των υπηρεσιών υποστήριξης σε ιδρύματα, υποστήριξης από την κοινότητα, φροντίδας ανάπαυσης και άλλα. Οι επίσημες υπηρεσίες μπορεί να χορηγούνται από δημόσιους φορείς, από ιδιωτικούς κερδοσκοπικους φορείς, ιδιωτικούς μη κερδοσκοπικους φορείς ή από συνδυασμό αυτών (39). Η επίσημη φροντίδα μπορεί να ωφελήσει τόσο τα άτομα με αναπηρία όσο και τους ανεπίσημους φροντιστές τους (62, 63). Για τις χώρες με χαμηλό εισόδημα, όμως, μπορεί να μην υπάρχουν διαθέσιμες πηγές για αυτού του είδους τις υπηρεσίες ή το κόστος για τους χρήστες μπορεί να είναι πολύ υψηλό (64). Η παραδοσιακή προσέγγιση της επίσημης φροντίδας με τη μορφή προσβάσιμων περιοχών στις χώρες με υψηλό εισόδημα, υπονομεύει την επιλογή και την ελευθερία των ατόμων με αναπηρία να ζήσουν μία φυσιολογική ζωή.
Οι χώρες με υψηλό εισόδημα έχουν διαπιστώσει μία μετακίνηση από την φροντίδα σε ιδρύματα (65, 66) στην φροντίδα που βασίζεται στην κοινότητα τις τελευταίες δεκαετίες. Υπάλληλοι υποστήριξης στην κοινωνία επιτρέπουν σε άτομα όλων των ηλικιών με ΚΝΜ να παραμένουν στα δικά τους σπίτια παρά να εισέρχονται σε ιδρύματα, μία λύση που θεωρείται προτιμητέα από τα περισσότερα άτομα και ορίζεται από το Άρθρο 19 του CPRD. Η κοινωνική βοήθεια μπορεί να συμβάλει στην ατομική φροντίδα, την κινητικότητα και την συμμετοχή, και έχει συσχετισθεί με καλύτερη υγεία και λειτουργικότητα στα άτομα με ΚΝΜ (67, 68). Η βοήθεια και η υποστήριξη που βασίζεται στο σπίτι είναι σημαντική για τα άτομα με ελάχιστη ή καθόλου κινητικότητα. Η έλλειψη κίνησης σχετίζεται με υψηλότερα ποσοστά ιατρικών επιπλοκών και υπογραμμίζει την αναγκαιότητα για υπαλλήλους με επίσημη εκπαίδευση στην διεκπεραίωση εργασιών που σχετίζονται με την υγεία (13, 69). Όταν εφαρμοστεί σωστά, έχει φανεί ότι η επίσημη βοήθεια με βάση την κοινωνία δεν είναι μόνο οικονομικά συμφέρουσα (70, 71), αλλά μπορεί επίσης να βελτιώσει την διαχείριση της νευρογενούς ουροδόχου κύστεως, μειώνοντας τον κίνδυνο δευτερογενών επιπλοκών που σχετίζονται με την ΚΝΜ (67) και να βελτιώσει την ποιότητα ζωής. Η συνεργασία με ΜΚΟ, όπως συνέβη στην Νότια Αφρική, για παράδειγμα, είναι ένας τρόπος με τον οποίο η επίσημη φροντίδα μπορεί να γίνει διαθέσιμη στους ανθρώπους των χωρών με χαμηλό και μέτριο εισόδημα (72).
Προσωπικοί βοηθοί Στις χώρες με υψηλό εισόδημα, για αυτούς που δεν έχουν την υποστήριξη της οικογένειας ή που προτιμούν να ανακουφίζουν την πίεση από τους ανεπίσημους φροντιστές πληρώνοντας για βοήθεια, ή που επιθυμούν καλύτερο έλεγχο και ευελιξία, το μοντέλο του προσωπικού βοηθού θεωρείται ευρέως ως μία καλή λύση. Ως προσωπικός βοηθός σε αυτό το σύγγραμμα αναφέρεται η ανθρώπινη βοήθεια που παρέχεται σε άτομα, κάτω όμως από τον δικό τους έλεγχο, έτσι ώστε να μπορούν να πραγματοποιήσουν βασικές δραστηριότητες απαραίτητες για την ζωή στην κοινότητα (π.χ. ντύσιμο, μπάνιο, τουαλέτα, πλύσιμο ρούχων, φροντίδα σπιτιού και ψώνια) (73).
Αντιμετώπιση εμποδίων Η ανεπίσημη φροντίδα και υποστήριξη έχει βρεθεί να είναι πιο αποτελεσματική όταν συνδυάζεται με διάφορα συστήματα επίσημης φροντίδας και υπηρεσιών. Για παράδειγμα, η φροντίδα ανάπαυσης επιτρέπει στις οικογένειες να κάνουν ένα διάλειμμα από την πίεση που σχετίζεται με την παροχή φροντίδας σε παιδιά με δισχιδή ράχη ή ΚΝΜ (62). 136
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
Η επίσημη βοήθεια και υποστήριξη που παρέχεται από γραφεία μπορεί να συνεπάγεται αυστηρούς κανόνες στον αριθμό των ωρών εργασίας και στο εύρος των εργασιών που ο υπάλληλος επιτρέπεται να εκτελεί, γεγονός που μπορεί να μειώνει την ικανότητα των χρηστών να διαπραγματευτούν υπηρεσίες πέρα από αυτές που επίσημα ορίζονται από το γραφείο (74). Αντιθέτως, τα προγράμματα προσωπικής βοήθειας που καθοδηγούνται από τον χρήστη έχουν βρεθεί να οδηγούν σε αύξηση του ευ ζην, να μειώνουν τις νοσηλείες, και να ενισχύουν την γενική ικανοποίηση των ατόμων (51, 74-76). Οι προσωπικοί βοηθοί επιτρέπουν στα άτομα με ΚΝΜ να συμμετέχουν περισσότερο στην κοινωνική ζωή (77), στο σχολείο, στον εθελοντισμό, στην ενεργό εργασία και στην ασχολία με κοινωνικές και δημιουργικές δραστηριότητες (51). Η διαθεσιμότητα ενός προσωπικού βοηθού μπορεί επίσης να επηρεάσει το ποσό της άσκησης που κάνει ένα άτομο. Μία μελέτη στις ΗΠΑ βρήκε ότι κάτω από τους μισούς χειριστές αναπηρικού αμαξιδίου πραγματοποιούσαν τις συστάσεις των 150 λεπτών μέτριας ή έντονης φυσικής δραστηριότητας την εβδομάδα (78). Οι Kehn και Kroll (79) ρώτησαν τους αθλούμενους και τους μη αθλούμενους με ΚΝΜ σχετικά με τα επίπεδα της φυσικής τους δραστηριότητας και βρήκαν ότι η ύπαρξη προσωπικού βοηθού ο οποίος βοηθάει στην χρήση μηχανημάτων και εξοπλισμού άσκησης ήταν ο πρωταρχικός λόγος για να πραγματοποιείται η άσκηση. Εμπόδια στην εξάπλωση του μοντέλου του προσωπικού βοηθού είναι η έλλειψη πόρων (80), οι δυσκολίες αξιολόγησης, και η ανάγκη για εκπαίδευση τόσο των χρηστών προσωπικών βοηθών όσο και των ίδιων των προσωπικών βοηθών. Η πρόσληψη ή διαχείριση ενός προσωπικού βοηθού απαιτεί ότι το άτομο με αναπηρία έχει τις απαραίτητες ικανότητες να διαχειριστεί τον προϋπολογισμό και να επιτελέσει εργασίες εργοδότη, οι οποίες μπορεί να μην είναι δυνατές ή αρεστές από όλους (81).
Αντιμετώπιση εμποδίων Εκτός από τους ιδιώτες με πρόσβαση σε προσωπικές πηγές, η παροχή προσωπικού βοηθού συνήθως εξαρτάται απο το κρατικό σύστημα υγείας και τοκοινωνικό ασφαλιστικό σύστημα. Παρόλα αυτά, μία συστηματική ανασκόπηση των στοιχείων βρήκε ότι η προσέγ-
γιση του προσωπικού βοηθού μπορεί να είναι οικονομικά συμφέρουσα στις χώρες με υψηλό εισόδημα, ιδίως όταν συγκρίνεται με το κόστος της ιδρυματικής φροντίδας για τα άτομα με μεγάλου βαθμού εξάρτηση (63). Στην Σουηδία, για παράδειγμα, ένα πρόγραμμα προσωπικού βοηθού είναι οικονομικά ανεκτό ώστε άτομα με σοβαρή αναπηρία να προσλαμβάνουν προσωπικούς βοηθούς, είτε απευθείας, είτε μέσω ενός παρόχου και έτσι λαμβάνουν εξατομικευμένη υποστήριξη που βελτιστοποιεί τον έλεγχο του ατόμου με αναπηρία στο πώς να ρυθμίζεται η υποστήριξη αυτή (82). Οι περισσότεροι άνθρωποι με ΚΝΜ στις χώρες με χαμηλό και μέτριο εισόδημα δεν μπορούν να πληρώσουν για προσωπικό βοηθό, και δεν έχουν την τύχη να λαμβάνουν υποστήριξη από το κράτος. Όμως, η ανεπίσημη βοήθεια και υποστήριξη μπορεί παρόλα αυτά να δοθεί με τρόπους που αντανακλούν τις αξίες των ανθρώπινων δικαιωμάτων για ενδυνάμωση και σεβασμό, αντί να ενισχύουν την εξάρτηση από άλλους (83, 84). Η παροχή προσωπικού βοηθού πρέπει να ξεκινά με μία εκτίμηση των αναγκών. Για παράδειγμα, στην Νέα Ζηλανδία η χρηματοδοτούμενη από το δημόσιο Εταιρία Αποζημίωσης Ατυχημάτων (ACC) Κρατική Υπηρεσία Σοβαρών Τραυματισμών σκοπεύει να ενθαρρύνει την ανεξάρτητη διαβίωση και την επιστροφή στην εργασία ορίζοντας έναν υπεύθυνο περιστατικού που θα βοηθάει στον συντονισμό των κοινωνικών αναγκών του ατόμου (85). Μία εκτίμηση των αναγκαίων ωρών βοήθειας συνήθως πραγματοποιείται από έναν ανεξάρτητο εργοθεραπευτή από το ACC, ο οποίος, ακολουθώντας τις βασικές αρχές, θα υπολογίσει το ποσοστό λειτουργικότητας ενός ατόμου με ΚΝΜ και τι χρειάζεται το άτομο αυτό σε μία τυπική ημέρα. Η υποστήριξη από οργανισμούς ατόμων με αναπηρία (DPOs) και άλλους οργανισμούς μεσολαβητές μπορεί να είναι κρίσιμη στην παρότρυνση ατόμων με αναπηρία ώστε να προσλάβουν και να διαχειριστούν τους βοηθούς τους και να εκπληρώσουν τον ρόλο του εργοδότη (86). Οι χρήστες γενικά προτιμούν να εκπαιδεύουν τους βοηθούς τους οι ίδιοι, ή μερικές φορές οι τωρινοί βοηθοί να εκπαιδεύουν τους αντικαταστάτες τους. Μπορεί να υπάρχουν ειδικές ανάγκες εκπαίδευσης πάνω σε θέματα όπως η χρήση αναπνευστήρα, το σήκωμα και η μεταφορά, και άλλες ανάγκες υγείας 137
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
όπως η παρακολούθηση του δέρματος, της αρτηριακής πίεσης, των αναπνευστικών λοιμώξεων και των λοιμώξεων του ουροποιητικού. Η εκπαίδευση των προσωπικών βοηθών αυξάνει τις γνώσεις τόσο των χρηστών όσο και των προσωπικών βοηθών (87) και μπορεί να βοηθήσει στην μείωση της πιθανότητας εμφάνισης επιπλοκών, οι οποίες συμβάλουν στην θνητότητα και θνησιμότητα ενώ αυξάνουν και το κόστος ιατρικής φροντίδας (88).
Οικογενειακές σχέσεις Η ανάληψη της φροντίδας είναι ένας από τους παράγοντες που μπορεί να κάνουν τις προσωπικές σχέσεις πιο δύσκολες. Η συζήτηση παραπάνω εστιάζει στην παροχή εργασιών για την φροντίδα παιδιών και ενηλίκων. Το αισθηματικό κομμάτι της οικογένειας, όμως, είναι εξίσου σημαντικό για τα άτομα με ΚΝΜ. Η διαθεσιμότητα κοινωνικής υποστήριξης – ειδικότερα η συναισθηματική υποστήριξη και η υποστήριξη στην επίλυση προβλημάτων – έχει βρεθεί να είναι σημαντική για την ικανοποίηση από την ζωή των ατόμων με ΚΝΜ στην αρχική φάση του τραυματισμού (89). Αισθήματα αξιοπρέπειας, περηφάνιας και αυτοπεποίθησης, ελπίδα και χαρά στις κοινωνικές τους επαφές δίνουν στα άτομα με ΚΝΜ μία ισχυρή πεποίθηση για μία επιτυχημένη ζωή (37, 90). Αυτές οι θετικές συμπεριφορές έχουν συνδεθεί με το μέγεθος και τον τύπο της υποστήριξης από την οικογένεια και τους φίλους. Η οικογένεια και οι φίλοι μπορεί να είναι πολύ σημαντικοί στον στόχο για ανάρρωση και στην ανάληψη νέων ρόλων ζωής, παρόλο που υπάρχει ο κίνδυνος της υπερβολικής βοήθειας (91), ειδικά στα παιδιά με ΚΝΜ. Υπάρχουν επίσης στοιχεία ότι, ενώ η κοινωνική υποστήριξη είναι σημαντική, η ύπαρξη συντρόφων οι οποίοι είναι φοβισμένοι σχετικά με τα σύνδρομα πόνου στην πραγματικότητα δυσχεραίνει τα άτομα με ΚΝΜ να διαχειριστούν τον πόνο (92). Διάφορες μελέτες έχουν βρει ότι η προσαρμογή στην αναπηρία ή τις σοβαρές χρόνιες νόσους έχει ως αποτέλεσμα το ενισχυμένο πνευματικό ευ ζην (93, 94). Πολλαπλές μελέτες ανέδειξαν ισχυρή σύνδεση μεταξύ πνευματικότητας και ποιότητας ζωής μεταξύ των ατόμων με ΚΝΜ (95, 96), και ότι η συμμετοχή στην θρησκεία μπορεί να παρέχει κοινωνική υποστήριξη (97, 98). 138
Τα άτομα με ΚΝΜ δεν πρέπει να αντιμετωπίζονται απλά ως παθητικοί δέκτες βοήθειας, αλλά ως ενεργοί και αυτόνομοι παράγοντες οι οποίοι συνειδητά διαμορφώνουν τις σχέσεις τους και το περιβάλλον τους χρησιμοποιώντας τον ψυχολογικό "εξοπλισμό" τους, - π.χ. τις κοινωνικές τους ικανότητες, ικανότητες συνεργασίας, δύναμη και οικονομικούς πόρους. Για παράδειγμα, μία μελέτη στο Ιράν βρήκε ότι η αυτοπεποίθηση, οι θρησκευτικές πεποιθήσεις, τα κοινωνικά δίκτυα και ο θετικός τρόπος σκέψης διευκολύνουν την αντιμετώπιση της κατάστασης (99). Τα άτομα με ΚΝΜ όχι μόνο λαμβάνουν αλλά μπορούν επίσης να παρέχουν υποστήριξη, και η παροχή βοήθειας μπορεί να είναι πιο ωφέλιμη από την αποδοχή της για τα άτομα με ΚΝΜ (68).
Σύντροφοι Η ΚΝΜ μπορεί να έχει αρνητικό αντίκτυπο στις σχέσεις, και πολλές έρευνες εντοπίζουν υψηλότερο κίνδυνο διαζυγίου μετά το ατύχημα (100-105). Όμως, αυτό μπορεί να είναι ένα βραχυπρόθεσμο αποτέλεσμα. Μία μελέτη βρήκε ότι πάνω από το 80,7% των παντρεμένων ανθρώπων παραμένουν παντρεμένοι πέντε χρόνια μετά τον τραυματισμό σε σύγκριση με το ποσοστό των 88,8% του γενικού πληθυσμού (106). Μία άλλη μελέτη αναφέρει ότι δεν υπάρχει διαφορά στα ποσοστά διαζυγίων μεταξύ των ατόμων με ΚΝΜ και του γενικού πληθυσμού (107). Ένα στοιχείο για αυτή την ποικιλία των αποτελεσμάτων δίνει μία έρευνα που πραγματοποιήθηκε στην Ταϊβάν και την Κίνα, η οποία βρήκε ότι η τραυματική ΚΝΜ οδηγεί είτε σε σύσφιξη της οικογένειας είτε σε διάλυσή της (108). Μπορεί επίσης να υπάρξουν θετικές επιρροές στις σχέσεις που προκύπτουν από το περισσότερο χρόνο που περνούν μαζί (109). Παρόλα αυτά, τα αποτελέσματα από αυτές τις μελέτες είναι δύσκολο να συγκριθούν, καθώς το χρονικό περιθώριο μετά τον τραυματισμό για διαζύγια και χωρισμούς ποικίλει, καθώς και ο ορισμός του γάμου (σε μερικές μελέτες άτομα που συγκατοικούν χωρίς να είναι παντρεμένα μερικές φορές περιλαμβάνονται στους παντρεμένους και μερικές φορές όχι) (110). Η ερμηνεία των ποικίλων αποτελεσμάτων των μελετών είναι ακόμη πιο δύσκολη εξαιτίας των πολιτιστικών διαφορών, των αλλαγών της θέσης της οικογένειας στην κοινωνία γενικά και των διαφορετικών
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
μεθόδων που χρησιμοποιούνται. Η σεξουαλικότητα είναι μία σημαντική διάμετρος των συντροφικών σχέσεων η οποία συχνά επηρεάζεται αρνητικά από την ΚΝΜ. Για παράδειγμα, μελέτες στο Ηνωμένο Βασίλειο και στην Ολλανδία βρήκαν ότι η σεξουαλική ικανοποίηση συχνά βαθμολογούνταν πολύ χαμηλά από ένα δείγμα ανθρώπων με ΚΝΜ 12-18 μήνες μετά το εξιτήριο (111, 112). Μελέτες ανδρών με ΚΝΜ σε σχέση συνδέουν την σεξουαλική ικανοποίηση με παράγοντες όπως η ικανοποίηση της συντρόφου και η ποιότητα της σχέσης περισσότερο από ότι με βιολογικούς παράγοντες όπως η εκσπερμάτωση (113, 114), παρόλο που, για ορισμένους ανθρώπους, ανησυχίες σχετικά με ακράτεια του εντέρου ή της κύστης αποτελούν αναχαιτιστικό παράγοντα για σεξουαλική δραστηριότητα (115). Μελέτες στην Ελλάδα, την Ινδία και την Κίνα βρήκαν ότι ο στιγματισμός και άλλες αρνητικές αντιλήψεις αποτελούν το μεγαλύτερο εμπόδιο στην σεξουαλικότητα και τον γάμο για τα άτομα με ΚΝΜ (116-118). Τα ραντεβού βαθμολογήθηκαν ως ένας από τους πιο δύσκολους παράγοντες μετάβασης στην ενήλικο ζωή ατόμων με έναρξη της ΚΝΜ σε παιδική ηλικία (119). Η σεξουαλικότητα μπορεί να μην αποτελεί πάντα πρόβλημα: σε μία μελέτη της Σουηδίας, 84% των συντρόφων ατόμων με ΚΝΜ θεωρούν την σχέση τους ικανοποιητική, και 45% θεωρούν την τωρινή σεξουαλική ζωή τους το ίδιο καλή ή ακόμη και καλύτερη από ότι πριν το τραυματισμό. Τα αισθήματα συναισθηματικής εγγύτητας, η ποικιλία σεξουαλικών δραστηριοτήτων και οι αμοιβαίες ανησυχίες ήταν πιο σημαντικά για τους συντρόφους από ότι οι φυσιολογικές πτυχές (120). Μία μελέτη 545 σκανδιναβών γυναικών με ΚΝΜ βρήκε ότι το 80% ασχολείται με το σεξ μετά τον τραυματισμό. Οι μισές από τις γυναίκες με ΚΝΜ είχαν σχέση και το 85% αισθανόταν ότι οι σχέσεις τους ήταν πολύ καλές ή σχετικά καλές. Όμως, υπήρχε χαμηλότερο επίπεδο δραστηριότητας, επιθυμίας, διέγερσης και ικανοποίησης στις γυναίκες με ΚΝΜ από ότι στην ομάδα ελέγχου (121).
Αντιμετώπιση εμποδίων Η υποστήριξη των προσωπικών σχέσεων είναι πολύ σημαντική ώστε να προωθείται το ευ ζην των ατόμων με ΚΝΜ. Η ύπαρξη σχέσης με έναν σύντροφο έχει θε-
τική επίδραση στην ποιότητα της ζωής (103) και στο ευ ζην (122). Πολλές μελέτες έχουν δείξει ότι η έγγαμη κατάσταση είναι ένας ισχυρός προγνωστικός παράγοντας για ανεξάρτητη διαβίωση (100, 107, 123, 124). Η καλή σεξουαλική προσαρμογή μετά την ΚΝΜ σχετίζεται θετικά με καλύτερη φυσική λειτουργικότητα, υψηλότερο εισόδημα, περισσότερη συμμετοχή στην εργασία και την κοινότητα και υψηλότερο ηθικό (125). Όλα τα μέλη της ομάδας αποκατάστασης έχουν ρόλο και ευθύνη να θέτουν θέματα σεξουαλικότητας στα άτομα με ΚΝΜ. Στην προαναφερθείσα σκανδιναβική μελέτη, το 61% των γυναικών δεν έλαβε καμία πληροφορία σχετικά με την σεξουαλικότητα μετά τον τραυματισμό. Οι συμμετέχοντες ήθελαν τόσο πληροφόρηση όσο και υποστήριξη, όχι πολύ άμεσα μετά τον τραυματισμό, αλλά όταν προέκυπτε η ανάγκη (121). Οι νέοι άνθρωποι με αναπηρία θα έπρεπε επίσης να έχουν πρόσβαση σε κατάλληλη σεξουαλική διαπαιδαγώγηση (126). Προγράμματα που βελτιώνουν την σεξουαλική ικανότητα από διεπιστημονικές ομάδες και μεμονωμένους κλάδους στην αποκατάσταση έχουν δείξει αποτελεσματικότητα (127, 128). Τα άτομα με ΚΝΜ ειδικά εκτιμούν την σεξουαλική συμβουλευτική από ομότιμους (129). Η περίοδος κλειδί κατά την οποία οι παρεμβάσεις για την σεξουαλική υγεία είναι σημαντικές είναι το διάστημα μεταξύ της ενδονοσοκομιακής αποκατάστασης και έξι μήνες μετά το εξιτήριο (130). Η συμβουλευτική σχέσεων έχει βρεθεί αποτελεσματική στην στήριξη ζευγαριών στα οποία ο ένας σύντροφος έχει ΚΝΜ, επειδή μπορεί να προωθήσει την αμοιβαιότητα και να βελτιώσει τις ικανότητες επικοινωνίας. Χρήσιμες προσεγγίσεις τονίζουν την δημιουργία νέων αμοιβαία ευχάριστων δραστηριοτήτων (131, 132). Το μοίρασμα των ευθυνών αντί για την παροχή φροντίδας έχει αναφερθεί από τις συζύγους ως ένας λόγος επιτυχημένου γάμου με έναν άντρα με ΚΝΜ (124). Για αυτούς τους οποίους η σχέση διαλύεται με την έναρξη της ΚΝΜ, υπάρχουν ελπιδοφόρα στοιχεία σχετικά με νέες σχέσεις. Οι άνθρωποι που ήταν παντρεμένοι πριν την κάκωση έχει βρεθεί ότι είναι πιο ικανοποιημένοι με την ζωή τους, τις σχέσεις και την υγεία τους και παρουσιάζουν βελτίωση στην σεξουαλική τους ζωή (113, 133). Αυτό μπορεί να συμβαίνει εν μέρει γιατί αυτή είναι μία υποομάδα των ατόμων
139
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
με ΚΝΜ που είναι πιο ενεργοί, καλύτερα προσαρμοσμένοι και ικανοποιημένοι από την αρχή, και επίσης επειδή ο γάμος βελτιώνει περαιτέρω την ποιότητα της ζωής τους (133).
Γονεϊκές και αδελφικές σχέσεις Η ΚΝΜ σε ένα νέο άτομο μπορεί να είναι τραυματική για ολόκληρη την οικογένεια. Ανασκοπήσεις στοιχείων αναδεικνύουν ότι το 12-13% των οικογενειών των παιδιών με δισχιδή ράχη παρουσιάζουν κλινικά επίπεδα "οικογενειακής δυσλειτουργίας" (134), και αυτά τα προβλήματα εντείνονται όταν οι οικογένειες προέρχονται από χαμηλότερο κοινωνικό-οικονομικό επίπεδο. Μία μελέτη στην Βόρεια Αμερική αναφέρει ότι το 25% των παιδιατρικών ασθενών, το 41% των μητέρων και το 35,6% των πατέρων εμφάνιζαν μετάτραυματικό στρες (PTSD) (135). Αντιθέτως, άλλα στοιχεία υποδεικνύουν ότι οι οικογένειες εμφανίζουν συχνά συνοχή και η αντιμετώπιση της δισχιδούς ράχης μπορεί ακόμη και να ενδυναμώσει τον γάμο των γονέων (134). Τα στοιχεία υπογραμμίζουν τόσο θετική όσο και αρνητική επίπτωση στα αδέλφια των παιδιών με ΚΝΜ – για παράδειγμα, άγχος και ανησυχία για την υγεία και την κοινωνικότητα των ανάπηρων αδελφών, αλλά επίσης αυξημένη εμπάθεια για τον ανάπηρο αδελφό και καλύτερη εκτίμηση των δικών τους φυσικών δυνατοτήτων (134). Υπάρχουν κάποια στοιχεία άγχους και κατάθλιψης στα αδέλφια των ανάπηρων παιδιών, αλλά αυτό με κανέναν τρόπο δεν είναι αναπόφευκτο (136) και εξαρτάται από το πόσο καλά η οικογένεια αντιμετωπίζει την κατάσταση (137). Το ανάπηρο παιδί θα πρέπει να αντιμετωπίζεται ως μέλος της οικογένειας με τον ίδιο τρόπο όπως και τα υπόλοιπα παιδιά. Οι άντρες και οι γυναίκες με ΚΝΜ μπορούν να αποκτήσουν παιδιά (138). Μία μελέτη στην Σκανδιναβία βρήκε ότι 18% των γυναικών με ΚΝΜ έκανε παιδιά μετά τον τραυματισμό (121). Τα στοιχεία δεν δείχνουν κάποια σημαντική διαφορά μεταξύ των μητέρων με ΚΝΜ και τις μητέρες χωρίς αναπηρία, ούτε στην πρόοδο των παιδιών που ανατράφηκαν από ανάπηρες μητέρες σε σχέση με τις μη ανάπηρες (139, 140). Παρόμοια στοιχεία είναι διαθέσιμα για τα παιδιά πατεράδων με ΚΝΜ (141). Όμως, μπορεί να υπάρχει ανάγκη για επαναπροσδιορισμό των γονικών ρόλων 140
ως αποτέλεσμα της αναπηρίας (142). Τα παιδιά συνήθως νοιώθουν άνετα με την αναπηρία του γονέα, και η ανοικτή συζήτηση θεωρείται να είναι το κλειδί για την αποδοχή (143). Υπάρχει ο κίνδυνος να ζητηθεί από τα παιδιά να αναλάβουν ρόλους φροντίδας προς τους γονείς ή τα αδέλφια με αναπηρία, οι οποίοι μπορεί να μη είναι σύμφωνοι με την ηλικία τους (144).
Αντιμετώπιση εμποδίων Όσοι παρέχουν υπηρεσίες υγείας θα πρέπει να αναγνωρίζουν τις οικογένειες των παιδιών με ΚΝΜ που χρήζουν ψυχολογική βοήθεια (134). Τα κοινωνικά δίκτυα είναι πολύ σημαντικά για τα άτομα με αναπηρία (145) και για τις οικογένειες ανάπηρων παιδιών. Μία Σουηδική μελέτη ατόμων που υπέστησαν ΚΝΜ στα εφηβικά τους χρόνια βρήκε ότι οι γονείς και οι συνομήλικοι αποτελούσαν ένα πολύ κρίσιμο κύκλωμα. Οι γονείς ήταν υποστηρικτές στις σχέσεις με τους παρόχους υπηρεσιών υγείας, και ήταν στήριγμα, βοηθούσαν στην αντιμετώπιση της θλίψης, του εκνευρισμού και του θυμού. Οι συνομήλικοι ήταν σημαντικοί για την προώθηση δραστηριοτήτων και την ανάπτυξη της ταυτότητας. Οι φροντιστές υγείας πρέπει να χρησιμοποιούν το κοινωνικό δίκτυο των ασθενών αποτελεσματικά (146). Η εκπαίδευση των γονιών μπορεί να επηρεάσει τις αντιλήψεις και να τους βοηθήσει να αναπτύξουν ρεαλιστικούς στόχους για τα παιδιά τους (16). Μία μελέτη στην Κένυα πάνω στην ποιότητα της ζωής των ατόμων με δισχιδή ράχη συμπέρανε ότι εκπαίδευση της οικογένειας, των φροντιστών και της κοινότητας σχετικά με αυτήν την κατάσταση θα συνέβαλε στην βελτίωση της φυσικής, ψυχολογικής και επικοινωνιακής ανάπτυξης του παιδιού (147). Η μετάβαση στην ενήλικο ζωή είναι ένα μέγα θέμα για τα παιδιά με δισχιδή ράχη (134, 148) και έχει αποτελέσει το αντικείμενο σημαντικής δουλειάς στην Βόρεια Αμερική (149) βασιζόμενη σε ένα μοντέλο πορείας ζωής, το οποίο χαρτογραφεί τα στάδια της ανάπτυξης και τα θέματα που έχουν την μεγαλύτερη επιρροή σε μία επιτυχημένη ενήλικο ζωή (150). Οι γονείς μπορεί να χρειάζονται εκπαίδευση για να εμφυσήσουν την ανεξαρτησία στα παιδιά τους έτσι ώστε να συνεχίσουν την εκπαίδευση και μετά το σχολείο, να ζήσουν ανεξάρτητα και εάν είναι δυνατόν να εργαστούν (148). Κοινωνικές ομάδες μπορεί να είναι βοηθητικές στις δραστηριότητες ελεύθερου χρόνου και
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
στη δημιουργία δικτύου φίλων. Τα νέα άτομα με δισχιδή ράχη θα πρέπει να ενθαρρύνονται να είναι ανεξάρτητα (151) και να κάνουν δραστηριότητες νοικοκυριού, να χρησιμοποιούν τα δημόσια μέσα μεταφοράς (όπου είναι προσβάσιμα και διαθέσιμα) και να συμμετέχουν σε δραστηριότητες της κοινότητας (152). Για να βοηθηθούν τα νέα άτομα με ΚΝΜ στην μετάβασή τους στην ενηλικίωση, η κατάλληλη σεξουαλική εκπαίδευση είναι επίσης πολύ σημαντική (126). Με γνώμονα τα μη ανάπηρα παιδιά, οι κοινωνικοί λειτουργοί και άλλοι υποστηρικτές θα πρέπει να βοηθούν τα αδέλφια των παιδιών με δισχιδή ράχη να καθοδηγήσουν το σύμπλεγμα των συναισθημάτων που σχετίζεται με την ύπαρξη ενός αδελφού ή αδελφής σε αυτήν την κατάσταση (153), και πρέπει να τα βοηθούν να αναπτύξουν τις δικές τους δυνάμεις και πηγές για να το διαχειριστούν. Τα κέντρα αποκατάστασης πρέπει να λαμβάνουν υπ όψιν τους την ανάγκη των παιδιών να επισκεφτούν έναν γονιό με μία πρόσφατη ΚΝΜ, τόσο παρέχοντας τις κατάλληλες δομές, όσο διευκολύνοντας την κατανόηση και την συναισθηματική προσαρμογή των παιδιών (154).
Προσαρμογή στην κάκωση νωτιαίου μυελού Η ΚΝΜ μπορεί να αποτελεί μία πρόκληση για την προσωπικότητα ενός ατόμου (155). Ένα προηγούμενα ανεξάρτητο άτομο μπορεί τώρα να μην έχει τον έλεγχο της ζωής του, ή ακόμη και του σώματος του και μπορεί να εξαρτάται από την βοήθεια άλλων ατόμων. Άτομα με τραυματική ΚΝΜ μπορεί επίσης να πάσχουν από κρανιοεγκεφαλική κάκωση που περιπλέκει την προσαρμογή (156). Πολλές μεταβλητές έχουν συσχετισθεί με την ποιότητα της ζωής μετά από την ΚΝΜ. Επιπρόσθετα με την κινητική ανικανότητα, υπάρχουν δευτερογενείς επιπλοκές όπως είναι η ακράτεια, η σπαστικότητα και ο πόνος που σχετίζονται με χαμηλότερη ικανοποίηση από τη ζωή (111, 112, 122, 157, 158). Επιπλέον, η κίνηση με το αναπηρικό αμαξίδιο μπορεί να είναι δύσκολη σε μη προσαρμοσμένο περιβάλλον, και η εμπειρία περιβαλλοντικών εμποδίων σχετίζεται με χαμηλότερη ικανοποίηση από τη ζωή (90). Η προσαρμογή στην αναπηρία είναι μία δυναμική διαδικασία όπου τα άτομα με ΚΝΜ κινούνται προς ένα καλύτερο
ταίριασμα με το περιβάλλον (159). Μία ανασκόπηση μελετών για την ικανοποίηση από την ζωή σε άτομα με ΚΝΜ (160) επιβεβαίωσε ότι οι άνθρωποι με ΚΝΜ βιώνουν, κατά μέσο όρο, υψηλότερα επίπεδα άγχους και χαμηλότερα επίπεδα ικανοποίησης από τη ζωή σε σύγκριση με τον γενικό πληθυσμό. Όμως, υπάρχουν σημαντικές παρεκκλίσεις και οι περισσότεροι άνθρωποι με ΚΝΜ προσαρμόζονται καλά στην κατάστασή τους. Για παράδειγμα, σε μία μελέτη στη Δανία, το 75% των συμμετεχόντων βιώνουν μία μείωση στην ικανοποίηση από τη ζωή μετά την ΚΝΜ, αλλά ένα έτος μετά την ΚΝΜ, το 50% των συμμετεχόντων ήταν ικανοποιημένοι ή πολύ ικανοποιημένοι με την ζωή τους (112). Μία ανασκόπηση των στοιχείων της ψυχικής υγείας έδειξε ότι 20 – 30% των ατόμων με ΚΝΜ εμφανίζουν κλινικά συμπτώματα κατάθλιψης, που είναι σημαντικά υψηλότερο ποσοστό από τον γενικό πληθυσμό (160). Κάποια στοιχεία υποδεικνύουν ότι τα καταθλιπτικά συμπτώματα μειώνονται με το πέρασμα του χρόνου, παρόλο που αυτό είναι αβέβαιο. Παρόμοια, οι περισσότερες μελέτες δείχνουν ότι το 7 – 27% των ατόμων με ΚΝΜ βιώνουν μετατραυματικό σύνδρομο (160). Αυτό το στοιχεί αποδεικνύει ότι, παρά τον μεγαλύτερο κίνδυνο για ψυχικές διαταραχές, η πλειοψηφία των ατόμων με ΚΝΜ προσαρμόζεται καλά στην κατάστασή του. Πιο μακροχρόνιες μελέτες αναδεικνύουν μία καλή προσαρμογή και ένα καλό επίπεδο ζωής μεταξύ των ατόμων που γηράσκουν με ΚΝΜ (158, 161). Μία μεγάλη μελέτη στη Γαλλία σε τετραπληγικά άτομα, για παράδειγμα, βρήκε ότι σχεδόν τα τρία τέταρτα των ατόμων που απάντησαν βαθμολογούσαν την υποκειμενική ποιότητα ζωής ως αρκετά καλή ή καλύτερη (122). Τα άτομα με ΚΝΜ που κάνουν επιτυχημένη προσαρμογή, όπως άλλα άτομα με επίκτητη αναπηρία, είναι αυτά που επιτυγχάνουν να προσαρμοστούν ψυχολογικά στην νέα κατάσταση. Αυτό μπορεί να περιλαμβάνει την αποφυγή ανέφικτων στόχων και την αλλαγή των κριτηρίων για επιτυχία (155). Είναι η ψυχική αλλαγή, όπως επίσης και οι υλικές δυνατότητες, που δίνουν την δυνατότητα στους ανθρώπους να είναι ικανοποιημένοι από τη ζωή (101). Μία θεωρία αξιολόγησης προτείνει ότι ο τρόπος που οι άνθρωποι αισθάνονται για τον εαυτό τους εξαρτάται από την συνειδητή απάντηση τους σε μία κατάσταση. Οι άνθρωποι χρησι141
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
μοποιούν διαφορετικές στρατηγικές αντιμετώπισης σύμφωνα με την εκτίμησή τους για την κατάσταση και τις συμπεριφορικές προτιμήσεις τους. Ένα ολοκληρωμένο εννοιολογικό πλαίσιο της προσαρμογής στα προβλήματα υγείας έχει περιγραφεί από (162), την ανάδειξη προσωπικών στοιχείων (π.χ. προσωπικότητα, νοημοσύνη), των παραγόντων που σχετίζονται με την υγεία, το κοινωνικό και το φυσικό πλαίσιο (π.χ. οικογένεια, περιβάλλον), το γνωστικό επίπεδο και τις διαδικασίες προσαρμογής (π.χ. διαχείριση συμπτωμάτων, θετική εικόνα εαυτού, συσχέτιση με άλλους): κάθε ένας από αυτούς τους παράγοντες αποτελεί έναν πιθανό στόχο παρέμβασης. Μία πρόσφατη μελέτη ψυχολογικών παραγόντων που σχετίζονται με την ψυχική υγεία και την ικανοποίηση από τη ζωή μετά την ΚΝΜ, που βασίζεται σε 48 μελέτες, δείχνει ότι οι παράγοντες που με συνέπεια σχετίζονται με την ικανοποίηση ή την ψυχική υγεία είναι ο αντιληπτός έλεγχος της ζωής, το αίσθημα συνοχής, οι θετικοί παράγοντες όπως η ελπίδα και ο σκοπός στη ζωή, αισθήματα αυτοεκτίμησης όπως η αύτο-αποτελεσματικότητα, η θετική και η αρνητική επιρροή, και η μετατραυματική επίγνωση (163). Ενώ η στρατηγική αντιμετώπισης της αποδοχής είναι ένας σταθερός, καθοριστικός παράγοντας της προσαρμογής, η πλειοψηφία των μέσων αντιμετώπισης που εστιάζονται στο συναίσθημα δεν σχετίζεται με την ικανοποίηση από τη ζωή ή την ψυχική υγεία. Παρόλο που η αντιμετώπιση βασισμένη στα ενεργά προβλήματα γενικά θεωρείται μία αγαπημένη στρατηγική, αυτό δεν ισχύει στην επιστημονική βιβλιογραφία. Ίσως στις περιπτώσεις που οι στόχοι εμποδίζονται, όπως συμβαίνει με την ΚΝΜ, η προσαρμογη των προσωπικών προτιμήσεων και στόχων σε αλλαγές κατά περίπτωση, είναι πιο αποτελεσματικη και σχετίζεται θετικότερα με την προσαρμογή του ατόμου, από το να προσπαθεί κανείς να προσαρμόσει τις συνθήκες ζωής στις προσωπικές προτιμήσεις του ατόμου (164).
Αντιμετώπιση εμποδίων Αποκατάσταση Η πρόσβαση σε υπηρεσίες αποκατάστασης πρέπει να οδηγεί σε κατάλληλες βοηθητικές τεχνολογίες και στην απόκτηση ικανότητας της αυτοδιαχείρισης του εντέρου και της κύστης, καθώς επίσης και στην λήψη 142
άλλων πληροφοριών και υποστήριξης, όλα από τα οποία αντιπροσωπεύουν σημαντικά βήματα στην προσαρμογή. Μία μικρή μελέτη στη Σρι Λάνκα παρέχει στοιχεία βελτίωσης της υγείας και της ψυχολογικής και κοινωνικής κατάστασης αντρών με ΚΝΜ που μπόρεσαν να έχουν πρόσβαση σε αποκατάσταση (165). Εφόσον ο τρόπος με τον οποίο οι άνθρωποι βλέπουν τον εαυτό τους είναι προγνωστικός για το πώς θα προσαρμοστούν στην φυσική αναπηρία (166, 167), αντιλήψεις για το τραυματισμένο σώμα πρέπει να δουλεύονται κατά την διαδικασία της αποκατάστασης για να ξαναδημιουργηθεί μία θετική αυτοεκτίμηση. Οι επαγγελματίες της αποκατάστασης μπορούν να έχουν μία σημαντική επιρροή στην εικόνα του ασθενούς για τον εαυτό του, παραδείγματος χάριν, παρέχοντας πληροφορίες και δημιουργώντας ευκαιρίες όπως ομαδικές εξόδους, οι οποίες έχει αναφερθεί ότι είναι ευεργετικές στο να ξεπεράσει κανείς τον φόβο ότι τον κοιτούν επίμονα (167). Τα στοιχεία για ψυχολογικές παρεμβάσεις μετά την ΚΝΜ αυξάνονται αλλά είναι ακόμη ανολοκλήρωτα. Η πιο συχνά μελετημένη παρέμβαση για την μείωση της καταθλιπτικής διάθεσης στα άτομα με ΚΝΜ είναι η γνωσιακή συμπεριφοριακή θεραπεία (Cognitive behavioural therapy - CBT), η οποία ενσωματώνει μία ποικιλία τεχνικών για να διευκολύνει την συναισθηματική και συμπεριφοριστική αλλαγή από το άτομο με ΚΝΜ (104, 168). Το CBT μπορεί να περιλαμβάνει την αντιμετώπιση "παράλογων" ή αρνητικών σκέψεων, την αύξηση των ευκαιριών για συμμετοχή σε δραστηριότητες επιβράβευσης, και οδηγίες χαλάρωσης. Τα θέματα αυτοπεποίθησης, οι κοινωνικές δεξιότητες και η σεξουαλικότητα επίσης εμπερικλείονται. Η παροχή CBT με την μορφή της ομάδας μπορεί επίσης να είναι μία οικονομικά συμφέρουσα ευκαιρία για υποστήριξη από ομότιμους, για εξάσκηση των κοινωνικών δεξιοτήτων και για την επαφή με επιπρόσθετες απόψεις (169, 170). Η "Coping effectiveness training" - CET (επίτευξη αποτελεσματικής εκπαίδευσης) μπορεί επίσης να είναι αποτελεσματική σε άτομα με ΚΝΜ (171, 172) και ειδικά σε αυτά με σοβαρές ψυχικές διαταραχές από το αρχικό στάδιο. Η παρέμβαση μπορεί να δουλέψει αλλάζοντας τις αρνητικές εκτιμήσεις για την ΚΝΜ και αυξάνοντας την αντιληπτή ικανότητα διαχείρισης των
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
συνεπειών της, βελτιώνοντας με αυτόν τον τρόπο την διάθεσή τους. Η υποστηρικτική ομαδική θεραπεία (SGT), η οποία δίνει έμφαση στην ανταλλαγή εμπειριών και πληροφοριών πάνω σε θέματα σχετικά με τον τραυματισμό, η εξερεύνηση των συναισθημάτων και των συνειδητών αντιδράσεων και η ευκαιρία για υποστήριξη και εκπαίδευση από ομότιμους και ψυχολόγους, είναι επίσης αποτελεσματική στην μείωση της κατάθλιψης και του άγχους (173). Μία ομάδα θετικών ψυχολογικών παραγόντων, συμπεριλαμβανομένης της αυτοπεποίθησης (self-efficacy: η πεποίθηση στην ικανότητα να επιτύχει σε μία κατάσταση) και αυτοεκτίμησης (self-esteem: η αίσθηση ενός ατόμου ότι έχει προσωπική αξία), σχετίζονται με μία καλύτερη ποιότητα ζωής. Αυτές οι μεταβλητές μπορεί να θεωρηθούν ως ψυχολογικά αποθέματα που βοηθούν τους ανθρώπους να επανακτήσουν την ποιότητα ζωής τους μετά από την ΚΝΜ. Για παράδειγμα, άτομα με υψηλή αυτοπεποίθηση και υψηλή αυτοεκτίμηση είναι πιο πιθανό να αναλάβουν προσωπικό έλεγχο για το μέλλον τους από ότι άτομα με χαμηλή αυτοπεποίθηση, εφόσον τα πρώτα έχουν ισχυρότερη πεποίθηση στις ικανότητές τους να επηρεάσουν την κατάστασή τους προς το καλύτερο. Οι θετικές ψυχολογικές παρεμβάσεις στοχευόμενες στην καλλιέργεια θετικών συναισθημάτων, συμπεριφορών και σκέψεων έχουν φανεί αποτελεσματικές σε άλλους πληθυσμούς (174), και θα μπορούσαν να ελεγχθούν σε άτομα με ΚΝΜ. Υπάρχουν στοιχεία για την αποτελεσματικότητα των διεπιστημονικών, πολύτροπων παρεμβάσεων με στόχο την ενθάρρυνση της αυτοπεποίθησης (175). Γενικές και ειδικές δραστηριότητες αυτοπεποίθησης – όπως για την ενεργό διαβίωση – έχουν βρεθεί να ενδυναμώνονται από ενεργά/ανεξάρτητα προγράμματα διαβίωσης (176, 177) ή με την φυσική δραστηριότητα ή τα αθλητικά προγράμματα (178-180). Η γνώση ενισχύθηκε σε ένα πολύτροπο πρόγραμμα παρέμβασης (181) και όπως φάνηκε συσχετιζόταν σημαντικά με την αντίληψη του ελέγχου μετά από ένα χρόνο παρακολούθησης. Ενώ οι επαγγελματίες υγείας συχνά αναγνωρίζουν την σημασία της ελπίδας, φαίνεται να το βρίσκουν δύσκολο να ισορροπήσουν τις «μη ρεαλιστικές» ελπίδες των ασθενών με αυτές που αντιλαμβάνονται ως πιο
"ρεαλιστικές" (182). Όμως, από μία συμπεριφοριστική προοπτική στην αρχική περίοδο μετά την ΚΝΜ, "η ελπίδα για ανάρρωση" μπορεί να αποτελέσει έναν αποτελεσματικό μηχανισμό διαχείρισης σε αντίθεση με μία μη ανεκτή κρίση υγείας (182, 183). Μπορεί για αυτό να είναι ευεργετικό να διατηρούμε την ελπίδα του ατόμου ζωντανή μέχρις ότου η ελπίδα για ανάρρωση από την ΚΝΜ δεν εμποδίζει την ενεργό συμμετοχή στο πρόγραμμα αποκατάστασης. Η διερεύνηση για ψυχολογικά προβλήματα στην αρχική φάση της ΚΝΜ θα εντοπίσει τα άτομα που χρειάζονται ψυχολογική υποστήριξη. Η ψυχιατρική θεραπεία για καταθλιπτικά άτομα με ΚΝΜ στην αρχική νοσηλεία χρειάζεται να είναι διαθέσιμη ως μέρος της λειτουργίας της διεπιστημονικής ομάδας αποκατάστασης. Υπάρχουν ισχυρές ενδείξεις ότι οι ψυχολογικές παρεμβάσεις σε αυτό το στάδιο είναι βοηθητικές και μπορούν να προλάβουν τα μακροπρόθεσμα προβλήματα προσαρμογής (160).
Ομάδες αυτοβοήθειας Τα άτομα με ΚΝΜ συνήθως εκτιμούν τις συνθήκες ομαδικής μάθησης στις οποίες μπορούν να συναντήσουν άλλα άτομα που έχουν παρόμοια επηρεαστεί και έτσι αισθάνονται λιγότερο απομονωμένα (184, 185), π.χ. ομάδες αυτοβοήθειας και ομότιμη υποστήριξη. Οργανισμοί όπως το Back-Up Trust στο Ηνωμένο Βασίλειο και το Spinal Injury Trust στην Νέα Ζηλανδία προσφέρουν εκπαίδευση, υποστήριξη και δραστηριότητες ανάπτυξης της αυτοεκτίμησης όπως ραπέλ και καγιάκ (δες πίνακα 6.2.). Σε μία μελέτη στην Γαλλία, η συμμετοχή σε δραστηριότητες της κοινότητας και η τακτική συνάντηση με φίλους συσχετίσθηκαν θετικά με το ευ ζην των ατόμων με τετραπληγία (122), παρόλο που η αιτία δεν αποδείχτηκε. Σε χώρες με χαμηλό και μέσο εισόδημα, τα ΜΚΟ μπορούν να διαδραματίσουν έναν σημαντικό ρόλο στην υποστήριξη της ανάπτυξης κοινωνικών δικτύων, τοπικών πλατφορμών δικτύωσης και οργανισμών καταναλωτών όπως αυτούς που υποστηρίζονται από την Livability Ireland στην νότια και νότιο-ανατολική Ασία (190). Η αγγλική ΜΚΟ που καλείται Motivation οργανώνει ομάδες ομότιμης εκπαίδευσης και εκπαίδευση εκπαιδευτών στο Μαλάουι, στην Μοζαμβίκη, την Ρουμανία και σε άλλες χαμηλού και μέσου εισοδήματος χώρες, με 143
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
σκοπό την δημιουργία ενός δικτύου ικανών ομότιμων συμβούλων και εκπαιδευτών οι οποίοι θα μπορούν να βοηθούν τα πρόσφατα παράλυτα άτομα να προσαρμοστούν στην νέα τους κατάσταση (191). Το κίνημα των αναπήρων ατόμων έχει βοηθήσει πολλούς ανθρώπους με αναπηρία να αναπτύξουν το δίκτυο των φίλων τους και ακόμη και να βρουν συντρόφους (192, 193). Οι οργανισμοί και τα δίκτυα ατόμων με ΚΝΜ παίζουν έναν σημαντικό ρόλο πέρα από την παροχή ζωτικής καθοδήγησης και με υπηρεσίες με Πίνακας 6.2. Οργανισμοί και δίκτυα ατόμων με ΚΝΜ
τη μορφή νομικής υποστήριξης, αθλητισμού, εργασίας και διαμονής (δες πίνακα 6.3.). Όμως, στοιχεία από μία μελέτη γάλλων με τετραπληγία ανέδειξαν ότι, ενώ το 56% των συμμετεχόντων ένοιωθαν ότι τα άτομα με αναπηρία αποτελούν μία κοινότητα, μόνο το ένα τρίτο από αυτούς ένοιωθαν ότι ανήκουν στην κοινότητα αυτή (194). Ιδιαιτέρως οι γυναίκες ήταν λιγότερο πιθανό να συμμετέχουν. Ήταν αυτοί που ήταν πιο κοινωνικά απομονωμένοι και που συχνότερα βίωναν χειρότερα συμπτώματα αυτοί που εξέφρασαν μία αί-
Οι οργανισμοί καταναλωτών και υπεράσπισης για τα άτομα με ΚΝΜ μπορούν να είναι πηγές ανεκτίμητης υποστήριξης και υπεράσπισης από ομότιμους. Οι οργανισμοί και τα δίκτυα ατόμων με ΚΝΜ μπορούν να βρεθούν σε διάφορα σημεία στον κόσμο σε εθνικό, θρησκευτικό και διεθνές επίπεδο, ενωμένοι στις προσπάθειές τους τόσο πολιτικά όσο και πρακτικά για την βελτίωση των συνθηκών διαβίωσης και ενθαρρύνοντας την συμμετοχή ατόμων με ΚΝΜ. Αυτές οι ομάδες μπορεί να εστιάζουν σε ένα μόνο θέμα, όπως οι αθλητικές δραστηριότητες (συχνά με στόχο να προσελκύσουν κορυφαίους αθλητές οι οποίοι μπορούν να αγωνιστούν διεθνώς), ή σε συγκεκριμένη δημογραφικά ομάδα (πχ. βετεράνοι, παιδιά). Ενδέχεται να καλύπτουν τις ανάγκες των ατόμων με ΚΝΜ σε όλους τους βασικούς τομείς της ζωής από την εκπαίδευση και την εργασία μέχρι την διαμόρφωση της κατοικίας και την υποστήριξη από ομότιμους. Οι οργανισμοί για την ΚΝΜ μπορεί να λειτουργούν ως ανεξάρτητοι οργανισμοί ή μπορεί να αποτελούν μέρος μεγαλύτερων οργανισμών ή δικτύων. Σε πολλές χώρες με χαμηλό ή μέσο εισόδημα, τέτοιοι ειδικοί οργανισμοί για την ΚΝΜ μπορεί να μην υπάρχουν και τα ενδιαφέροντα των ατόμων με ΚΝΜ προωθούνται ως μέρος οργανισμών για διάφορες αναπηρίες. Παρόλα αυτά, οργανισμοί για την ΚΝΜ έχουν δημιουργηθεί σε ορισμένες χώρες με χαμηλό εισόδημα, συμπεριλαμβανομένου του Νεπάλ και της Ουγκάντα. Σε ορισμένες χώρες, τοπικές μικρές πρωτοβουλίες από πρώην ασθενείς έχουν εξελιχθεί ως αποτέλεσμα προσωπικής ανάγκης για βοήθεια και σωστή στέγαση και έχουν συνδυάσει να δημιουργήσουν ένα εθνικό δίκτυο οργανισμών, όπως το Spinal Cord Injury Australia (SCIA), το οποίο παρέχει στέγαση και υπηρεσίες φροντίδας, εργασία και υποστήριξη κοινωνικής υπηρεσίας. Το SCIA επίσης φιλοξενεί ένα νομικό τμήμα που εργάζεται για να προωθήσει τον αποκλεισμό και τα λόμπι για ειδικά προγράμματα ή νομοθετικές αλλαγές από, για παράδειγμα, υποβολές στις κυβερνητικές επιτροπές (πχ. για την παροχή υπηρεσιών υγείας και ιατρών στις αγροτικές περιοχές) ή υποστηρίζοντας τις διαδικασίες αναθεώρησης πολιτικής (πχ. αναθεώρηση των πινάκων για την εκτίμηση της σχετιζόμενης με την εργασία αναπηρίας για την αναπηρική σύνταξη) (186). Το SCIA έχει υποστηρίξει στο παρελθόν ατομικά αιτήματα, όπως στην περίπτωση ενός παραπόνου για διακρίσεις από τα ταξί (187). Τα τοπικά δίκτυα μπορούν να αποτελέσουν έναν τρόπο ανταλλαγής εμπειριών και παράγοντες επιτυχίας στην εκτέλεση αλλαγών και μπορούν να παρέχουν υποστήριξη σε πρωτοβουλίες που αναζητούν την δημιουργία εθνικών οργανισμών. Η Ευρωπαϊκή Ομοσπονδία ΚΝΜ (ESCIF) ιδρύθηκε το 2006 και αντιπροσωπεύει 26 εθνικούς οργανισμούς για την ΚΝΜ στην Ευρώπη. Ο ρόλος της είναι να διαδώσει πληροφορίες, να διεξάγει ετήσια συνέδρια και να προάγει την δική της έρευνα σε θέματα όπως μητρώα ατόμων με ΚΝΜ ή την πρόβλεψη ειδικής φροντίδας και αποκατάστασης για την ΚΝΜ (188). Χτίζοντας πάνω σε αυτές τις επιτυχημένες εμπειρίες σε εθνικό και τοπικό επίπεδο, το Global Spinal Cord Injury Consumer Network (189) ξεκίνησε από το ESCIF και το Asian Spinal Cord Network (ASCoN) το 2012, με σκοπό να γεφυρώσει τις υπάρχοντες ομάδες για την ΚΝΜ, ιδρύοντας νέες ομάδες σε αδικημένες χώρες και περιοχές και επεκτείνοντας τις δραστηριότητες τους. Οι σπουδαιότερες δραστηριότητες και στόχοι του Global SCI Consumer Network είναι να: ■ τυποποιήσουν τα κοινωνικά κανάλια (πχ. ιστοσελίδες, νέα δεδομένα) ■ συνδέσουν οργανισμούς και ανθρώπους κλειδιά για να υποστηρίξουν και να προωθήσουν τοπικές πρωτοβουλίες ■ παράγουν χρηματοδότηση και άλλη υποστήριξη για τις δραστηριότητες του διεθνούς δικτύου ■ συναντιούνται οι «πρεσβευτές» της ΚΝΜ από όλο τον κόσμο ■ οργανώσουν ένα σώμα εθελοντών ΚΝΜ ώστε να βοηθούν ομάδες με ΚΝΜ σε άλλες χώρες ή περιοχές του κόσμου ■ οργανώσουν διεθνείς συναντήσεις δικτύων για την ΚΝΜ ■ μακροπρόθεσμα, να τυποποιήσουν το δίκτυο ως έναν παγκόσμιο οργανισμό ή ομοσπονδία.
144
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
σθηση ότι ανήκουν στα δίκτυα των αναπήρων (194). Φυσική δραστηριότητα και αθλητισμός Η τακτική φυσική δραστηριότητα μπορεί να έχει ουσιώδη κοινωνικά πλεονεκτήματα, παρέχοντας έναν τρόπο καθιέρωσης καινούριων φίλων, ανταλλαγής εμπειριών, ανάπτυξης κοινωνικών δικτύων υποστήριξης και βελτιώνοντας την γενική λειτουργικότητα (195, 196). Η συμμετοχή σε αθλήματα έχει αναφερθεί ότι επανακαθιερώνει την επαφή με τον κόσμο βοηθώντας την κοινωνική ολοκλήρωση και βελτιώνοντας τις οικογενειακές σχέσεις (197-199). Μία μετά-ανάλυση βρήκε μία μικρή έως μέτρια θετική συσχέτιση μεταξύ της φυσικής δραστηριότητας και το υποκειμενικό ευ ζην (200). Μία ανασκόπηση της βιβλιογραφίας αναδεικνύει ψυχολογικά αλλά και σωματικά πλεονεκτήματα της συμμετοχής σε δραστηριότητες αναψυχής και σωματικές δραστηριότητες (201), όπως είναι η αυΠίνακας 6.3. Υποστήριξη ομότιμων στην Σρι Λάνκα
ξημένη κοινωνική επαφή. Μία μελέτη στις ΗΠΑ δείχνει ότι άτομα με ΚΝΜ που συμμετείχαν σε αθλήματα είχαν υψηλότερη βαθμολογία στην σωματική ανεξαρτησία, την κινητικότητα, την εργασία και την κοινωνική συσχέτιση από ότι οι μη αθλητές (197), με ψυχολογικά πλεονεκτήματα ειδικά σε αυτούς που συμμετείχαν σε ομαδικά αθλήματα (202). Μία γερμανική μελέτη δείχνει ότι τα άτομα που συμμετείχαν ενεργά σε αθλήματα είχαν υψηλότερο ποσοστό εργασίας και καλύτερη ποιότητα ζωής (203). Άτομα άλλα πέρα από τους θεραπευτές τείνουν να είναι η πηγή της κινητοποίησης για την συμμετοχή σε αθλήματα (204). Ο εξειδικευμένος εξοπλισμός επιτρέπει σε άτομα με ΚΝΜ να συμμετέχουν σε μία ευρεία γκάμα αθλημάτων (205207). Τα τελευταία χρόνια χαμηλού κόστους αναπηρικά αμαξίδια για μπάσκετ και τένις είναι διαθέσιμα στις αναπτυσσόμενες χώρες (208).
Ο Σύνδεσμος Σπονδυλικής Κάκωσης (SIA) της Σρι Λάνκα ξεκίνησε από ιδιώτες με ΚΝΜ και έχει εφαρμόσει πολλά χρήσιμα προγράμματα επιπρόσθετα με ομαδική εκπαίδευση από ομότιμους. Σε μηνιαία βάση, μέλη του SIA επισκέπτονται το γενικό νοσοκομείο και συναντούν ανθρώπους που απέκτησαν πρόσφατα ΚΝΜ. Λειτουργούν ως μοντέλα και βοηθούν τους πρόσφατα τραυματισμένους ανθρώπους να ξεπεράσουν το αρχικό σοκ του τραυματισμού τους, παρέχοντάς τους πληροφορίες και δείχνοντας ότι είναι δυνατόν να ζήσει κάποιος μία χρήσιμη ζωή ακόμη και με ΚΝΜ. Ανέκδοτες αναφορές υποδεικνύουν ότι αυτή η συμβουλευτική από ομότιμους βοήθησε πολλά άτομα που είχαν χάσει την ελπίδα και πίστευαν ότι οι ζωές τους τελείωσαν μετά την παράλυση λόγω της ΚΝΜ. Όπως αναφέρεται στην ακόλουθη μαρτυρία, αυτό το πρόγραμμα φαίνεται να είναι επιτυχημένο και μπορεί να λειτουργήσει ως μοντέλο για άλλους που επιθυμούν να υιοθετήσουν και να εξελίξουν περαιτέρω τα προγράμματα συμβουλευτικής από ομότιμους. "Είχα ένα αυτοκινητιστικό ατύχημα τον Σεπτέμβριο του 1980 και υπέστη ΚΝΜ στο επίπεδο Θ4. Μετά από την θεραπεία για τις πληγές σε ένα γενικό νοσοκομείο για τρεις μήνες μεταφέρθηκα στο μοναδικό διαθέσιμο νοσοκομείο εκείνη την στιγμή για αποκατάσταση ατόμων με ΚΝΜ, το Ragama Rehabilitation Hospital. Μου έδειξε ένας άλλος ασθενής του νοσοκομείου πώς να κάνω φτιάχνω έναν αυτοσχέδιο καθετήρα από προφυλακτικό τον οποίο άρχισα να χρησιμοποιώ αφού κατήργησα τον μόνιμο καθετήρα με τον οποίο είχα προηγουμένως εφοδιαστεί. Για τις εντερικές κενώσεις απλώς καθόσουν στην τουαλέτα και ευχόσουν για το καλύτερο. Είχα μικρές πληγές στους γλουτούς οι οποίες ήταν ενοχλητικές. Η ζωή μου άλλαξε το 1998. Το Motivation United Kingdom άνοιξε ένα γραφείο στην Σρι Λάνκα για να εκπαιδεύει τις νοσηλεύτριες στο νοσοκομείο της αποκατάστασης πώς να διαχειρίζονται τους ασθενείς με ΚΝΜ και για να δημιουργήσουν ένα εργαστήριο κατασκευής αναπηρικών αμαξιδίων. Δημιούργησαν επίσης ένα εκπαιδευτικό πρόγραμμα για εκπαιδευτές ομάδων ομότιμων, το οποίο παρακολούθησα. Το πενθήμερο εκπαιδευτικό πρόγραμμα περιελάμβανε μαθήματα για το τι είναι η ΚΝΜ, την πρόληψη των ελκών πίεσης, την σημασία χρήσης ενός καλού μαξιλαριού στο αναπηρικό αμαξίδιο, τον έλεγχο του εντέρου, την διαχείριση της κύστης, την φροντίδα του δέρματος, την σεξουαλικότητα, τις ικανότητες με το αμαξίδιο, την συντήρηση του αμαξιδίου και άλλα θέματα. Εδώ έμαθα για την δακτυλική διέγερση και την αφαίρεση των κοπράνων ώστε να διαχειρίζομαι το έντερο. Νωρίτερα είχα πολύ άγχος όταν ταξίδευα λόγω της αβεβαιότητας σχετικά με τις κενώσεις του εντέρου μου. Μετά την εκπαίδευση άλλαξα το μαξιλάρι του αναπηρικού αμαξιδίου που χρησιμοποιούσα και αυτό απέτρεψε τα έλκη πίεσης. Το γεγονός ότι η εκπαίδευση γινόταν από ένα άλλο άτομο με ΚΝΜ είχε μεγάλο αντίκτυπο. Μετά την εκπαίδευση, η δραστηριότητες της καθημερινής ζωής έγιναν πολύ πιο εύκολες. Ένοιωθα άνετα και είχα αυτοπεποίθηση όταν ταξίδευα τόσο τοπικά όσο και στο εξωτερικό. Αργότερα ο Σύνδεσμος Σπονδυλικής Κάκωσης της Σρι Λάνκα (SIA) συνέχισε με ομαδική εκπαίδευση από ομότιμους και ήταν ικανοποιητικό να βλέπεις την βελτίωση στην ποιότητα ζωής των ατόμων με ΚΝΜ που συμμετείχαν στην εκπαίδευση." Cyril, Sri Lanka
145
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Συμπεράσματα και συστάσεις Τα άτομα με αναπηρία συνήθως βαθμολογούν την ποιότητα της ζωής τους υψηλότερα από ότι τα άτομα χωρίς αναπηρία βαθμολογούν την ποιότητα της ζωής των αναπήρων (20, 174). Αισθήματα αξιοπρέπειας, περηφάνιας, αυτοπεποίθησης, ελπίδας και χαράς στις κοινωνικές επαφές παρέχουν στο άτομο με ΚΝΜ μία ισχυρή πεποίθηση μίας επιτυχημένης ζωής (37, 90). Οι θετικές συμπεριφορές έχουν συνδεθεί με το μέγεθος και τον τύπο της υποστήριξης από την οικογένεια και τους φίλους. Παρεμβάσεις για αλλαγή των αρνητικών συμπεριφορών απέναντι στα άτομα με ΚΝΜ και άλλες αναπηρίες πρέπει να αποτελέσει προτεραιότητα, όπως καθορίζεται από το Άρθρο 8 του CRPD. Συγκεκριμένα, οι επαγγελματίες υγείας και οι πάροχοι άλλων υπηρεσιών πρέπει να εκπαιδεύονται ώστε να εξασφαλίζεται ότι αντιμετωπίζουν τα άτομα με ΚΝΜ και άλλες αναπηρίες με σεβασμό και αξιοπρέπεια. Η πρόβλεψη για κατάλληλες υπηρεσίες, τόσο κατά την αποκατάσταση όσο και για την μετέπειτα ζωή στην κοινότητα, μπορεί να διευκολύνει την προσαρμογή και να βελτιώσει την ποιότητα της ζωής των ατόμων με ΚΝΜ. Η επαρκής πληροφόρηση και η ψυχολογική υποστήριξη είναι ιδιαιτέρως σημαντικές. Ενώ οι ανάγκες για βοήθεια καλύπτονται γενικά από συγγενείς, η πρόβλεψη της κατ’οίκον φροντίδας, φροντίδας διακοπών και του προσωπικού βοηθού μπορεί να απελευθερώσει τα άτομα με ΚΝΜ και τα μέλη των οικογενειών τους. Η συμμετοχή σε αθλήματα, πολιτιστικές και πνευματικές δραστηριότητες μπορεί να αυξήσει την αυτοπεποίθηση και να βελτιώσει το ευ ζην. Οι ακόλουθες συστάσεις δείχνουν συγκεκριμένους τρόπους επίτευξης.
και οργανισμούς αυτοβοήθειας ■ διευκόλυνση της πρόσβασης σε δραστηριότητες, αθλητικές, θρησκευτικές, πολιτιστικές, πολιτικές και αναψυχής, καθώς επίσης και στην εκπαίδευση και την εργασία. Υποστήριξη των μελών της οικογένειας και των φροντιστών των ατόμων με αναπηρία παρέχοντας: ■ συμβουλευτική, πληροφορίες και οδηγίες στα μέλη της οικογένειας και τους φροντιστές ■ ευκαιρίες συνάντησης με άλλα άτομα σε παρόμοια κατάσταση και την ανάπτυξη ομάδων αυτοβοήθειας ■ σύμβουλοι γάμου και άλλες παρεμβάσεις για ζευγάρια που επηρεάστηκαν από την αναπηρία, συμπεριλαμβανομένων πληροφοριών και συμβουλών σχετικά με τις οικίες σχέσεις ■ συναισθηματική και κοινωνική υποστήριξη για τα αδέλφια παιδιών με δισχιδή ράχη και ΚΝΜ, συμπεριλαμβανομένων υπηρεσιών για την μετάβαση στην ενήλικο ζωή ■ φροντίδα ανάπαυλας και άλλη υποστήριξη για οικογένειες παιδιών με δισχιδή ράχη και ΚΝΜ όταν είναι απαραίτητο και σωστό.
Ανάπτυξη υπηρεσιών φροντίδας Όπου είναι εφικτό, υποστήριξη της ανάπτυξης υπηρεσιών προσωπικής φροντίδας με: ■ ανάπτυξη φροντίδας από την κοινότητα και εκτίμηση των διαδικασιών για την υποστήριξη σχημάτων μεταξύ των ενδιαφερόμενων και των παρόχων φροντίδας ■ ανάπτυξη νομικών και οικονομικών πλαισίων που να επιτρέπουν την άμεση πληρωμή προσωπικού βοηθού. ■ ενθάρρυνση των ατόμων με ΚΝΜ και άλλες αναπηρίες να χρησιμοποιούν προσωπικό βοηθό, για παράδειγμα, προωθώντας υποδομές οργανώσεων που να μπορούν να υποστηρίξουν τους χρήστες προσωπικών βοηθών.
Παροχή υποστήριξης Υποστήριξη παιδιών και ενηλίκων με ΚΝΜ ώστε να επιτύχουν μία θετική αυτοεκτίμηση και προσαρμογή με, για παράδειγμα: ■ πρόσβαση σε συμβουλευτική και πληροφορίες στις δομές αποκατάστασης και στην ευρύτερη κοινότητα, συμπεριλαμβανομένων πληροφοριών για την σεξουαλικότητα ■ ανάπτυξη των δικτύων υποστήριξης από ομότιμους 146
Αλλαγή συμπεριφοράς Χρειάζεται βοήθεια ώστε να εξασφαλιστεί ότι οι επαγγελματίες, οι πάροχοι άλλων βασικών υπηρεσιών και τα μέλη του γενικού πληθυσμού θα αναπτύξουν μία
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
θετική στάση ως προς την αναπηρία με: ■ εξασφάλιση ότι τα θέματα ανθρωπίνων δικαιωμάτων που σχετίζονται με την αναπηρία συμπεριλαμβάνονται στο πρόγραμμα σπουδών των δασκάλων, ιατρών και επαγγελμάτων που σχετίζονται με την υγεία ■ παροχή εκπαίδευσης ισότητας για την αναπηρία σε προσωπικό με ευθύνες φροντίδας, όπως στις μεταφορές, τις κοινωνικές και τις οικιακές υπηρεσίες ■ υποστήριξη της κοινωνικής γνώσης, πληροφόρησης και εκπαιδευτικών πρωτοβουλιών ώστε να αλλάξουν οι αρνητικές στάσεις προς την αναπηρία, για παράδειγμα στα σχολεία και στα μέσα επικοινωνίας (ΜΜΕ).
Προώθηση της έρευνας Αύξηση των στοιχείων για παρεμβάσεις προωθώντας την έρευνα σε θέματα όπως: ■ αποτελεσματικές παρεμβάσεις για αλλαγή των αρνητικών συμπεριφορών προς την αναπηρία ■ σχήματα άμεσης φροντίδας οικονομικά συμφέροντα και ικανοποιητικά για τον ενδιαφερόμενο ■ αποτελεσματικότητα ψυχολογικών παρεμβάσεων για την υποστήριξη προσαρμογής στην ΚΝΜ ■ ο ρόλος των παρεμβάσεων όπως ο αθλητισμός, τα κοινωνικά μέσα και οι ομάδες αυτοβοήθειας στην υποστήριξη ατόμων με ΚΝΜ ώστε να αναπτύξουν θετική αυτοεκτίμηση και να δημιουργήσουν διαπροσωπικές σχέσεις.
Βιβλιογραφία 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. Chan F, Da Silva Cardoso E, Chronister, J.A. eds. Understanding psychosocial adjustment to chronic illness and disability: a handbook for evidence-based practitioners in rehabilitation. New York, NY, Springer Publishing 2009. Boswell BB, Dawson M, Heininger E. Quality of life defined by adults with spinal cord injuries. Journal of Rehabilitation, 1998, 64:2732. Hampton NZ, Qin-Hilliard DB. Dimensions of quality of life for Chinese adults with spinal cord injury: a qualitative study. Disability and Rehabilitation, 2004, 26:203-212. doi: http://dx.doi.org/10.1080/09638280310001639704 PMID:15164954 United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/disabilities-convention.htm, accessed 9 May 2012). Stiker HJ. Corps Infirmes et Sociétés. Paris, Dunod, 1997. Weinberg N. Another perspective: attitudes of people with disabilities. In: Yuker HE, ed. Attitudes toward persons with disabilities. New York, NY, Springer, 1988 (pp. 141–153). Wright B. Attitudes and the fundamental negative bias: conditions and corrections. In: Yuker HE, ed. Attitudes toward persons with disabilities. New York, NY, Springer, 1988 (pp. 3–21). Garland-Thomson R. Staring: how we look. Oxford, Oxford University Press, 2009. Reeve D. Psycho-emotional disablism: the missing link? In: Watson N, Roulstone A, Thomas C, eds. Routledge handbook of disability studies. Routledge, London, 2012. Gallois C. Communicating disability: stereotypes, identity and motivation. In: Ng SH, Canddlin CN, Chiu CY, eds. Language matters: communication, identity and culture. Hong Kong, City University of Hong Kong Press, 2004. Reinhardt JD et!al. Visual perception and appraisal of persons with impairments: a randomised controlled field experiment using photo elicitation. Disability and Rehabilitation, 2011, 33:441-452. Epub 2010 Jul 23 doi: http://dx.doi.org/10.3109/0963 8288.2010.500344 PMID:20653364 Ingstad B, Whyte SR, editors. Disability and culture. Berkeley, CA, University of California Press, 1995. Murray TA. Switching from hospital-based practice to home care. Home Care Provider, 1996, 1:79-82. doi: http://dx.doi. org/10.1016/S1084-628X(96)90233-6 PMID:9157912 Naami A, Havashi R. Perceptions about disability among Ghanaian university students. Journal of Social Work in Disability & Rehabilitation, 2012, 11:100-111. doi: http://dx.doi.org/10.1080/1536710X.2012.677616 PMID:22630599
12. 13. 14.
147
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25.
26.
27.
28. 29. 30.
31. 32. 33.
34.
van’t Veer T et!al. Quality of life for families with spina bifida in Kenya. Tropical Doctor, 2008, 38:160-162. doi: http://dx.doi. org/10.1258/td.2007.070053 PMID:18628544 Maloni PK et!al. Perceptions of disability among mothers of children with disability in Bangladesh: implications for rehabilitation service delivery. Disability and Rehabilitation, 2010, 32:845-854. doi: http://dx.doi. org/10.3109/09638280903326063 PMID:20131951 Gray DB et!al. A subjective measure of environmental facilitators and barriers to participation for people with mobility limitations. Disability and Rehabilitation, 2008, 30:434-457. doi: http://dx.doi.org/10.1080/09638280701625377 PMID:17943511 Noreau L, Fougeyrollas P, Boschen KA. Perceived influence of the environment on social participation among individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2002, 7:56-72. doi: http://dx.doi.org/10.1310/1UGA-EY2T-N6XP-1PHE Lys K, Pernice R. Perceptions of positive attitudes towards people with spinal cord injury. International Journal of Rehabilitation Research, 1995, 18:35-43. doi: http://dx.doi.org/10.1097/00004356-199501000-00004 PMID:7797318 Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Social Science & Medicine, 1999, 48:977988. doi: http://dx.doi.org/10.1016/S0277-9536(98)00411-0 PMID:10390038 Amundson R. Quality of life, disability, and hedonic psychology. Journal for the Theory of Social Behaviour, 2010, 40:374-392. doi: http://dx.doi.org/10.1111/j.1468-5914.2010.00437.x Hernandez B et!al. Construction and validation of the Disability Rights Attitude Scale: assessing attitudes toward the Americans with Disabilities Act (ADA). Rehabilitation Psychology, 1998, 43:203-218. doi: http://dx.doi. org/10.1037/0090-5550.43.3.203 Lyons M. Enabling or disabling? Students’ attitudes towards people with disabilities. The American Journal of Occupational Therapy., 1991, 45:311-316. Peterson PA, Quarstein VA. Disability awareness training for disability professionals. Disability and Rehabilitation, 2001, 23:43-48. doi: http://dx.doi.org/10.1080/09638280150211293 PMID:11213323 Saketkoo L et!al. Effects of a disability awareness and skills training workshop on senior medical students as assessed with self ratings and performance on a standardized patient case. Teaching and Learning in Medicine, 2004, 16:345-354. doi: http://dx.doi.org/10.1207/s15328015tlm1604_7 PMID:15582871 Ison N et!al. “Just like you”: a disability awareness programme for children that enhanced knowledge, attitudes and acceptance: pilot study findings. Developmental Neurorehabilitation, 2010, 13:360-368. doi: http://dx.doi.org/10.3109/1751 8423.2010.496764 PMID:20828333 Rillotta F, Nettelbeck T. Effects of an awareness program on attitudes of students without an intellectual disability towards persons with an intellectual disability. Journal of Intellectual & Developmental Disability, 2007, 32:19-27. doi: http://dx.doi. org/10.1080/13668250701194042 PMID:17365364 Lindsay S, Edwards A. A systematic review of disability awareness interventions for children and youth. Disability and Rehabilitation, 2012,epub ahead of print PMID:22831703 Pointon A, Davies C. Framed: interrogating disability in the media. London, British Film Institute publications, 2008. Rauch A et!al. Rehabilitation needs assessment in persons with spinal cord injury following the 2010 earthquake in Haiti: a pilot study using an ICF-based tool. Journal of Rehabilitation Medicine, 2011, 43:969-975. doi: http://dx.doi. org/10.2340/16501977-0896 PMID:22031341 Hill R. Haiti Hospital Appeal Community Based Rehabilitation Pilot Survey –The effect of disability within families in Northern Haiti 2011. Haiti Hospital Appeal, 2011.Unpublished. Phillips C. Reaching the “cocobai”: reconstruction and persons with disabilities in Haiti. Policy paper. Ottawa, FOCAL Canadian Foundation for the Americas, 2011. United Nations. (UN) Panel discussion on sports for inclusive development: sports,disability and development: key to empowerment of persons with disabilities and their communities. New York, United Nations, 2011 (http://www.un.org/ disabilities/default.asp?id=1574/, accessed 29.5.2012) Smith DL. Disparities in patient–physician communication for persons with a disability from the 2006 Medical Expenditure Panel Survey (MEPS). Disability and Health Journal, 2009, 2:206-215. doi: http://dx.doi.org/10.1016/j. dhjo.2009.06.002 PMID:21122761
148
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
35. 36. 37. 38. 39. 40. 41. 42. 43. 44. 45. 46. 47. 48.
49. 50. 51. 52. 53. 54. 55. 56.
Aulagnier M et!al. General practitioners’ attitudes towards patients with disabilities: the need for training and support. Disability and Rehabilitation, 2005, 27:1343-1352. doi: http://dx.doi.org/10.1080/09638280500164107 PMID:16321918 Furlan JC et!al. Attitudes towards the older patients with spinal cord injury among registered nurses: a cross-sectional observational study. Spinal Cord, 2009, 47:674-680. doi: http://dx.doi.org/10.1038/sc.2009.23 PMID:19365396 Gerhart KA et!al. Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Annals of Emergency Medicine, 1994, 23:807-812. doi: http://dx.doi.org/10.1016/S0196-0644(94)70318-3 PMID:8161051 Dorji S, Solomon P. Attitudes of health professionals toward persons with disabilities in Bhutan. Asia Pacific Disability Rehabilitation Journal, 2009, 20:32-42. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/publications/ 2011/9789240685215_eng.pdf, accessed 10 May 2012). Lucke KT. Knowledge acquisition and decision-making: spinal cord injured individuals perceptions of caring during rehabilitation. SCI Nursing, 1997, 14:87-95. PMID:9355615 Bach CA, McDaniel RW. Quality of life in quadriplegic adults: a focus group study. Rehabilitation Nursing, 1993, 18:364-367. doi: http://dx.doi.org/10.1002/j.2048-7940.1993.tb00790.x PMID:7938891 Eddey GE, Robey KL. Considering the culture of disability in cultural competence education. Academic Medicine, 2005, 80:706712. doi: http://dx.doi.org/10.1097/00001888-200507000-00019 PMID:15980092 Shakespeare T, Iezzoni LI, Groce NE. Disability and the training of health professionals. Lancet, 2009, 374:1815-1816. doi: http://dx.doi.org/10.1016/S0140-6736(09)62050-X PMID:19957403 Spain R. In practice from the point of view of a disabled nurse. In: Swain J, French S, eds. Disability on equal terms. London, Sage, 2008. Baum CM, Gray DB. The family and rehabilitation services: minimizing the impact on personal relationships. In: McColl M, Bickenbach J, eds. Introduction to disability. London, Saunders, 1998: 167–173. Weitzenkamp DA et!al. Spouses of spinal cord injury survivors, the added impact of caregiving. Archives of Physical Medicine and Rehabilitation, 1997, 78:822-827. doi: http://dx.doi.org/10.1016/S0003-9993(97)90194-5 PMID:9344300 Blanes L, Carmagnani MI, Ferreira LM. Health-related quality of life of primary caregivers of persons with paraplegia. Spinal Cord, 2007, 45:399-403. doi: http://dx.doi.org/10.1038/sj.sc.3102038 PMID:17310256 de Azevedo GR, Santos VL. Handicapped caregiver: the social representations of family members about the caregiving process. Revista Latino-Americana de Enfermagem, 2006, 14:770-780. doi: http://dx.doi.org/10.1590/S0104- 11692006000500020 PMID:17117264 Post MW, Bloemen J, de Witte LP. Burden of support for partners of persons with spinal cord injuries. Spinal Cord, 2005, 43:311319. doi: http://dx.doi.org/10.1038/sj.sc.3101704 PMID:15685263 Gajraj-Singh P. Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord, 2011, 49:928-934. doi: http://dx.doi.org/10.1038/sc.2011.15 PMID:21383762 Hagglund KJ et!al. A comparison of consumer-directed and agency-directed personal assistance services programmes. Disability and Rehabilitation, 2004, 26:518-527. doi: http://dx.doi.org/10.1080/09638280410001672472 PMID:15204459 McLennan M et!al. Rehabilitation learning needs: patient and family perceptions. Patient Education and Counseling, 1996, 27:191199. doi: http://dx.doi.org/10.1016/0738-3991(95)00799-7 PMID:8788349 DeSanto-Madeya S. Adaptation to spinal cord injury for families post-injury. Nursing Science Quarterly, 2009, 22:57-66. doi: http://dx.doi.org/10.1177/0894318408327295 PMID:19176861 Schulz R et!al. Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology, 2009, 54:1-15. doi: http://dx.doi.org/10.1037/a0014932 PMID:19618698 Elliott TR et al. Problem-solving training via videoconferencing for family caregivers of persons with spinal cord injuries: a randomized controlled trial. Behaviour Research and Therapy, 2008, 46(11):1220–1229 (E-pub 26 August 2008). Elliott TR, Berry JW. Brief problem-solving training for family caregivers of persons with recent-onset spinal cord injuries: a randomized controlled trial. Journal of Clinical Psychology, 2009, 65:406-422. doi: http://dx.doi.org/10.1002/ jclp.20527 PMID:19229946
149
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
57.
58.
59. 60. 61. 62.
63. 64. 65. 66. 67. 68. 69. 70. 71. 72. 73.
74. 75.
76.
Aitken ME et!al. Experiences from the development of a comprehensive family support program for pediatric trauma and rehabilitation patients. Archives of Physical Medicine and Rehabilitation, 2005, 86:175-179. doi: http://dx.doi.org/10.1016/j. apmr.2004.02.026 PMID:15641010 Holmbeck GN et!al. Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions. Developmental and Behavioral Pediatrics, 2006, 27:249-277. doi: http://dx.doi. org/10.1097/00004703-20060600000012 Mullins LL et!al. The influence of respite care on psychological distress in parents of children with developmental disabilities: a longitudinal study. Children’s Services (Mahwah, N.J.), 2002, 5:123-138. doi: http://dx.doi.org/10.1207/ S15326918CS0502_06 Miles M. Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society, 2002, 17:643-658. doi: http://dx.doi.org/10.1080/0968759022000010425 Hartley S et!al. How do carers of disabled children cope? The Ugandan perspective. Child: Care, Health and Development, 2005, 31:167-180. doi: http://dx.doi.org/10.1111/j.1365-2214.2004.00464.x PMID:15715696 Kumamoto K, Arai Y, Zarit SH. Use of home care services effectively reduces feelings of burden among family caregivers of disabled elderly in Japan: preliminary results. International Journal of Geriatric Psychiatry, 2006, 21:163-170. doi: http:// dx.doi.org/10.1002/gps.1445 PMID:16416464 Mayo-Wilson E, Montgomery P, Dennis JA. Personal assistance for adults (19–64) with physical impairments. [Review]Cochrane Database of Systematic Reviews, 2008, Issue 3:CD006856. doi: http://dx.doi.org/10.1002/14651858. CD006856.pub2 Sekaran P et!al. Community reintegration of spinal cord-injured patients in rural south India. Spinal Cord, 2010, 48:628-632. doi: http://dx.doi.org/10.1038/sc.2010.6 PMID:20142832 Mansell J. Deinstitutionalisation and community living: progress, problems and priorities. Journal of Intellectual &Developmental Disability, 2006, 31:65-76. doi: http://dx.doi.org/10.1080/13668250600686726 PMID:16782591 Chiriacescu D. Shifting the paradigm in social service provision: making quality services accessible for people with disabilities in South East Europe. Belgrade, Disability Monitor Initiative for South East Europe, 2008. Vaidyanathan S et!al. Community-care waiting list for persons with spinal cord injury. Spinal Cord, 2001, 39:584-588. doi: http://dx.doi.org/10.1038/sj.sc.3101212 PMID:11641808 Müller R et!al. The role of social support and social skills in people with spinal cord injury – a systematic review of the literature. Spinal Cord, 2012, 50:94-106. doi: http://dx.doi.org/10.1038/sc.2011.116 PMID:22006079 Bains P, Minhas AS. Profile of home-based caregivers of bedridden patients in North India. Indian Journal of Community Medicine, 2011, 36:114-119. doi: http://dx.doi.org/10.4103/0970-0218.84129 PMID:21976795 Lansley P et!al. Adapting the homes of older people: a case study of costs and savings. Building Research and Information, 2004, 32:468-483. doi: http://dx.doi.org/10.1080/0961321042000269429 Kim KM, White GW, Fox MH. Comparing outcomes of persons choosing consumer-directed or agency-directed personal assistance services. Journal of Rehabilitation, 2006, 72:32-43. DICAG. Disabled children’s action group (DICAG) South Africa. Manchester, Enabling Education Network, 2001 (http://www.eenet.org.uk/resources/docs/dicag.php, accessed 22 April 2012). LaPlante MP et al. Unmet need for personal assistance services: estimating the shortfall in hours of help and adverse consequences. Journal of Gerontology. Series B, Psychological sciences and social sciences, 2004, 59:S98–S108. doi:10.1093/ geronb/59.2.S98 doi: http://dx.doi.org/10.1093/geronb/59.2.S98 PMID:15014097 Benjamin AE, Matthias R, Franke TM. Comparing consumer-directed and agency models for providing supportive services at home. [Part II]. Health Services Research, 2000, 35:351-366. PMID:10778820 Knickman JR, Stone RI. The public/private partnership behind the cash and counseling demonstration and evaluation: its origins, challenges, and unresolved issues. Health Services Research, 2007, 42:362-377. doi: http://dx.doi.org/10.1111/j.14756773.2006.00675.x PMID:17244288 Clark MJ, Hagglund KJ, Sherman AK. A longitudinal comparison of consumer-directed and agency-directed personal assistance service programmes among persons with physical disabilities. Disability and Rehabilitation, 2008, 30:689-695. doi: http://dx.doi.org/10.1080/09638280701463878 PMID:17852213
150
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
77. 78. 79. 80. 81. 82. 83.
84.
85. 86. 87. 88. 89. 90. 91. 92.
93. 94. 95. 96. 97.
Kaye HS. The personal assistance workforce: trends in supply and demand. Health Affairs, 2006, 25:1113-1120. doi: http:// dx.doi.org/10.1377/hlthaff.25.4.1113 PMID:16835193 Warms CA et!al. Measurement and description of physical activity in adult manual wheelchair users. Disability and Health Journal, 2008, 1:236-244. doi: http://dx.doi.org/10.1016/j.dhjo.2008.07.002 PMID:21122734 Kehn M, Kroll T. Staying physically active after spinal cord injury: a qualitative exploration of barriers and facilitators to exercise participation. BioMed Central Public Health, 2009, 9:168. doi: http://dx.doi.org/10.1186/1471-2458-9-168 PMID:19486521 Coble-Temple A, Mona LR, Bleecker T. Accessing personal assistance services in the workplace: struggles and successes. Journal of Vocational Rehabilitation, 2003, 18:113-123. Weitzenkamp DA, Whiteneck GG, Lammertse DP. Predictors of personal care assistance for people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2002, 83:1399-1405. doi: http://dx.doi.org/10.1053/ apmr.2002.35087 PMID:12370876 Clevnert U, Johansson L. Personal assistance in Sweden. Journal of Aging & Social Policy, 2007, 19:65-80. doi: http://dx.doi. org/10.1300/J031v19n03_05 PMID:17613470 Takamine Y. The cultural perspectives of independent living and self-help movement of people with disabilities: a review of empirical findings. Asia Pacific Journal on Disability, 1998 (http://www.dinf.ne.jp/doc/english/asia/resource/z00ap/ 002/ z00ap00208.html, accessed 25 April 2012). Bieler RB. Independent living in Latin America: progress in adapting a “First World” philosophy to the realities of the “Third World”. In: Garcia Alonso JV, ed. El movimiento de vida independiente: experiencias internacionales. Madrid, Fundación Luis Vives, 2003: 218–242. NSIS. National Serious Injury Service. Wellington, Accident Compensation Corporation, Government of New Zealand, 2008 (http://www.acc.co.nz/making-a-claim/how-do-i-make-a-claim/ECI0012, accessed 27 April 2012). Riddell S et!al. The development of direct payments: implications for social justice. Social Policy and Society, 2005, 4:75-85. doi: http://dx.doi.org/10.1017/S1474746404002209 Schopp LH et!al. Evaluation of a consumer-personal assistant training project. Disability and Rehabilitation, 2007, 29:403- 410. doi: http://dx.doi.org/10.1080/09638280600835903 PMID:17364793 Hagglund KJ et!al. Consumer-assistant education to reduce the occurrence of urinary tract infections among persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2005, 10:53-62. doi: http://dx.doi.org/10.1310/JQ0J-BX6J-RAPB-P2T4 van Leeuwen CMC et!al. Social support and life satisfaction in spinal cord injury during and up to one year after inpatient rehabilitation. Journal of Rehabilitation Medicine, 2010, 42:265-271. doi: http://dx.doi.org/10.2340/16501977-0502 PMID:20411223 Whiteneck G et!al. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1793-1803. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.024 PMID:15520974 Pearcey TE, Yoshida KK, Renwick RM. Personal relationships after a spinal cord injury. International Journal of Rehabilitation Research, 2007, 30:209-219. doi: http://dx.doi.org/10.1097/MRR.0b013e32829fa3c1 PMID:17762766 Jensen MP et!al. Psychosocial factors and adjustment to chronic pain in persons with physical disabilities: a systematic review. Archives of Physical Medicine and Rehabilitation, 2011, 92:146-160. doi: http://dx.doi.org/10.1016/j. apmr.2010.09.021 PMID:21187217 Feher S, Maly R. Coping with breast cancer in later life: the role of religious faith. Psycho-Oncology, 1999, 8:408-416. doi: http://dx.doi.org/10.1002/(SICI)1099-1611(199909/10)8:5<408::AID-PON409>3.0.CO;2-5 PMID:10559800 McColl MA et!al. Changes in spiritual beliefs after traumatic disability. Archives of Physical Medicine and Rehabilitation, 2000, 81:817823. PMID:10857530 Matheis EN, Tulsky DS, Matheis RJ. The relationship between spirituality and quality of life among individuals with spinal cord injury. Rehabilitation Psychology, 2006, 51:265-271. doi: http://dx.doi.org/10.1037/0090-5550.51.3.265 Forchheimer MB, Tate DG. The relationship of spirituality and depression to health among people with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2007, 12:23-34. doi: http://dx.doi.org/10.1310/sci1203-23 George LK et!al. Spirituality and health: what we know, what we need to know. Journal of Social and Clinical Psychology, 2000, 19:102-116. doi: http://dx.doi.org/10.1521/jscp.2000.19.1.102
151
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
98. 99.
100. 101. 102. 103. 104. 105. 106. 107. 108. 109. 110. 111. 112.
113. 114. 115. 116. 117. 118. 119. 120.
Franklin KL et!al. Relationships among religiousness, spirituality, and health for individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2008, 14:76-88. doi: http://dx.doi.org/10.1310/sci1402-76 PMID:20351789 Babamohamadi H, Negarandeh R, Dehghan-Naveri N. Barriers to and facilitators of coping with a spinal cord injury for Iranian patients: a qualitative study. Nursing & Health Sciences, 2011, 13:207-215. doi: http://dx.doi.org/10.1111/j.14422018.2011.00602.x PMID:21595815 DeVivo MJ, Fine PR. Spinal cord injury: its short-term impact on marital status. Archives of Physical Medicine and Rehabilitation, 1985, 66:501-504. PMID:4026550 Crewe NM, Krause JS. Marital relationships and spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1988, 69:435438. PMID:3377669 DeVivo MJ et!al. Outcomes of post-spinal cord injury marriages. Archives of Physical Medicine and Rehabilitation, 1995, 76:130138. doi: http://dx.doi.org/10.1016/S0003-9993(95)80022-0 PMID:7848071 Kreuter M et!al. Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury. Spinal Cord, 1998, 36:252-261. doi: http://dx.doi.org/10.1038/sj.sc.3100592 PMID:9589525 Craig AR et!al. Immunizing against depression and anxiety after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1998, 79:375-377. doi: http://dx.doi.org/10.1016/S0003-9993(98)90136-8 PMID:9552101 Arango-Lasprilla JC et!al. Influence of race/ethnicity on divorce/separation 1, 2, and 5 years post spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:1371-1378. doi: http://dx.doi.org/10.1016/j.apmr.2009.02.006 PMID:19651271 DeVivo M, Richards JS. Community reintegration and quality of life following spinal cord injury. Paraplegia, 1992, 30:108-112. El Ghatti AZ, Hanson RW. Outcome of marriages existing at the time of a male’s spinal cord injury. Journal of Chronic Diseases, 1975, 28:383-388. doi: http://dx.doi.org/10.1016/0021-9681(75)90034-X PMID:1159036 Chen HY, Boore JR. Living with a relative who has a spinal cord injury: a grounded theory approach. Journal of Clinical Nursing, 2009, 18:174-182. doi: http://dx.doi.org/10.1111/j.1365-2702.2008.02355.x PMID:19120747 Bocarro J, Sable J. Finding the right P.A.T.H: exploring the familial relationships and the role of a community TR program in the initial years after a spinal cord injury. Therapeutic Recreation Journal, 2003, 37:58-72. Kreuter M. Spinal cord injury and partner relationships. Spinal Cord, 2000, 38:2-6. Kennedy P et!al. A multi-centre study of the community needs of people with spinal cord injuries: the first 18 months. Spinal Cord, 2010, 48:15-20. doi: http://dx.doi.org/10.1038/sc.2009.65 PMID:19528997 van Koppenhagen CF et!al. Changes and determinants of life satisfaction after spinal cord injury: a cohort study in the Netherlands. Archives of Physical Medicine and Rehabilitation, 2008, 89:1733-1740. doi: http://dx.doi.org/10.1016/j. apmr.2007.12.042 PMID:18675395 Kreuter M, Sullivan M, Siösteen A. Sexual adjustment after spinal cord injury – comparison of partner experiences in pre- and postinjury relationships. Paraplegia, 1994, 32:759-770. doi: http://dx.doi.org/10.1038/sc.1994.122 PMID:7885719 Phelps J et!al. Spinal cord injury and sexuality in married or partnered men: activities, function, needs, and predictors of sexual adjustment. Archives of Sexual Behavior, 2001, 30:591-602. doi: http://dx.doi.org/10.1023/A:1011910900508 PMID:11725457 Anderson KD et!al. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 2007, 45:328-337. PMID:17033620 Sakellariou D, Sawada Y. Sexuality after spinal cord injury: the Greek male’s perspective. The American Journal of Occupational Therapy, 2006, 60:311-319. doi: http://dx.doi.org/10.5014/ajot.60.3.311 PMID:16776398 Sharma SC et!al. Assessment of sexual functions after spinal cord injury in Indian patients. International Journal of Rehabilitation Research, 2006, 29:17-25. doi: http://dx.doi.org/10.1097/01.mrr.00001855947.56810.fc PMID:16432385 Zhang J. A survey of the needs of and services for persons with physical disability in China. Asia Pacific Disability Rehabilitation Journal, 2007, 18:49-85. Anderson CJ et!al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine, 2004, 27:S98-S106. PMID:15503711 Kreuter M, Sullivan M, Siösteen A. Sexual adjustment after spinal cord injury (SCI) focusing on partner experiences. Paraplegia, 1994, 32:225-235. doi: http://dx.doi.org/10.1038/sc.1994.42 PMID:8022632
152
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
121. Kreuter M, Siösteen A, Biering-Sørensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. Journal of Rehabilitation Medicine, 2008, 40:61-69. doi: http://dx.doi.org/10.2340/16501977-0128 PMID:18176739 122. Ville I, Ravaud J-F. Tetrafigap Group. Subjective well-being and severe motor impairments: the Tetrafigap survey on the long-term outcome of tetraplegic spinal cord injured persons. Social Science & Medicine, 2001, 52:369-384. doi: http:// dx.doi.org/10.1016/S0277-9536(00)00140-4 PMID:11330772 123. DeJong G, Branch LG, Corcoran PJ. Independent living outcomes in spinal cord injury: multivariate analyses. Archives of Physical Medicine and Rehabilitation, 1984, 65:66-73. PMID:6696605 124. Holicky R, Charlifue S. Ageing with spinal cord injury: the impact of spousal support. Disability and Rehabilitation, 1999, 21:250257. doi: http://dx.doi.org/10.1080/096382899297675 PMID:10381237 125. Berkman AH et!al. Sexual adjustment of spinal cord injured veterans living in the community. Archives of Physical Medicine and Rehabilitation, 1978, 59:29-33. PMID:619850 126. Murphy N, Young PC. Sexuality in children and adolescents with disabilities. Developmental Medicine and Child Neurology, 2005, 47:640-644. PMID:16138674 127. Fronek P et!al. The effectiveness of a sexuality training program for the interdisciplinary spinal cord injury rehabilitation team. Sexuality and Disability, 2005, 23:51-63. doi: http://dx.doi.org/10.1007/s11195-005-4669-0 128. Post MWM et!al. Sexological competence of different rehabilitation disciplines and effects of a discipline-specific sexological training. Sexuality and Disability, 2008, 26:3-14. doi: http://dx.doi.org/10.1007/s11195-007-9068-2 129. Forsythe E, Horsewell JE. Sexual rehabilitation of women with spinal cord injury. Spinal Cord, 2006, 44:234-241. doi: http:// dx.doi.org/10.1038/sj.sc.3101844 PMID:16172622 130. Fisher TL et!al. Sexual health after spinal cord injury: a longitudinal study. Archives of Physical Medicine and Rehabilitation, 2002, 83:1043-1051. doi: http://dx.doi.org/10.1053/apmr.2002.33654 PMID:12161824 131. Urey JR, Henggeler SW. Marital adjustment following spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1987, 68:69-74. PMID:3813859 132. Sheija A, Manigandan C. Efficacy of support groups for spouses of patients with spinal cord injury and its impact on their quality of life. International Journal of Rehabilitation Research, 2005, 28:379-383. doi: http://dx.doi.org/10.1097/00004356- 20051200000015 PMID:16319568 133. Crewe NM, Krause JS. Marital status and adjustment to spinal cord injury. The Journal of the American Paraplegia Society, 1992, 15:14-18. 134. Holmbeck GN, Devine KA. Psychosocial and family functioning in spina bifida. Developmental Disabilities Research Reviews, 2010, 16:40-46. doi: http://dx.doi.org/10.1002/ddrr.90 PMID:20419770 135. Boyer BA et!al. Prevalence and relationships of post-traumatic stress in families experiencing pediatric spinal cord injury. Rehabilitation Psychology, 2000, 45:339-355. doi: http://dx.doi.org/10.1037/0090-5550.45.4.339 136. Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta analysis. Journal of Pediatric Psychology, 2002, 27:699710. doi: http://dx.doi.org/10.1093/jpepsy/27.8.699 PMID:12403860 137. Bellin MH et!al. Factors associated with the psychological and behavioural adjustment of siblings of youths with spina bifida. Families, Systems & Health, 2009, 27:1-15. doi: http://dx.doi.org/10.1037/a0014859 PMID:19630441 138. Skowronski E, Hartman K. Obstetric management following traumatic tetraplegia: case series and literature review. Australian and New Zealand Journal of Obstetrics and Gynaecology, 2008, 48:485-491. doi: http://dx.doi.org/10.1111/j.1479828X.2008.00909.x PMID:19032665 139. Jackson AB. Pregnancy and delivery. Sexuality and Disability, 1996, 14:211-219. doi: http://dx.doi.org/10.1007/ BF02590079 140. Alexander CJ, Hwang K, Sipski ML. Mothers with spinal cord injuries: impact on marital, family, and children’s adjustment. Archives of Physical Medicine and Rehabilitation, 2002, 83:24-30. doi: http://dx.doi.org/10.1053/apmr.2002.27381 PMID:11782828 141. Buck FM, Hohmann GW. Personality, behaviour, values and family relations of children of fathers with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1981, 62:432-438. PMID:6456711 142. Quigley MC. Impact of spinal cord injury on the life roles of women. The American Journal of Occupational Therapy, 1995, 49:780786. doi: http://dx.doi.org/10.5014/ajot.49.8.780 PMID:8526223
153
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
143. 144. 145. 146. 147. 148. 149. 150. 151. 152. 153. 154. 155. 156. 157. 158. 159. 160. 161. 162. 163. 164. 165. 166.
Duvdevany I, Buchbinder E, Yaacov I. Accepting disability: the parenting experience of fathers with spinal cord injury. Qualitative Health Research, 2008, 18:1021-1033. doi: http://dx.doi.org/10.1177/1049732308318825 PMID:18650559 Aldridge J, Sharpe D. Pictures of young caring. Loughborough, University of Loughborough, 2007. Isaksson G et!al. Women’s perceptions of change in the social network after a spinal cord injury. Disability and Rehabilitation, 2005, 27:1013-1021. doi: http://dx.doi.org/10.1080/09638280500030431 PMID:16096255 Augutis M et!al. Psychosocial aspects of traumatic spinal cord injury with onset during adolescence: a qualitative study. The Journal of Spinal Cord Medicine, 2007, 30:S55-S64. PMID:17874688 Cornegé-Blokland E et!al. Quality of life of children with spina bifida in Kenya is not related to the degree of the spinal defects. Tropical Medicine & International Health, 2011, 16:30-36. doi: http://dx.doi.org/10.1111/j.1365-3156.2010.02680.x PMID:21070514 Mukherjee S. Transition to adulthood in spina bifida: changing roles and expectations. TheScientificWorldJournal, 2007, 7:18901895. doi: http://dx.doi.org/10.1100/tsw.2007.179 PMID:18060327 Thibadeau JK, Ariksson-Schmidt AI, Zabel TA. The National Spina Bifida Program transition initiative: the people, the plan and the process. Pediatric Clinics of North America, 2010, 57:903-910. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.010 PMID:20883880 Spina Bifida. Becoming an adult living successfully with spina bifida. SB Preparations (http://www.sbpreparations.com, accessed 24 May 2012). Ridosh M et!al. Transition in young adults with spina bifida: a qualitiative study. Child: Care, Health and Development, 2011, 37:866874. doi: http://dx.doi.org/10.1111/j.1365-2214.2011.01329.x PMID:22007987 Ruck J, Dahan-Oliel N. Adolescence and young adulthood in spina bifida: self-report on care received and readiness for the future. Topics in Spinal Cord Injury Rehabilitation, 2010, 16:26-37. doi: http://dx.doi.org/10.1310/sci1601-26 Bellin MH, Kovacs PJ, Sawin KJ. Risk and protective influences in the lives of siblings of youth with spina bifida. Health & Social Work, 2008, 33:199-209. doi: http://dx.doi.org/10.1093/hsw/33.3.199 PMID:18773795 Webster G, Hindson LM. The adaptation of children to spinal cord injury of a family member: the individual’s perspective. SCI Nursing, 2004, 21:82-87. PMID:15553078 Gerschick TJ, Miller AS. Coming to terms: masculinity and physical disability. In: Sabo DF, Gordon DF, eds. Men’s health and illness: gender, power, and the body. Thousand Oaks, CA, Sage Publications, 1995 183–204. Buchanan KM, Elias LJ. Psychological distress and family burden following spinal cord injury: concurrent traumatic brain injury cannot be overlooked. Axone (Dartmouth, N.S.), 2001, 22:16-17. PMID:14625968 Post MW et!al. Predictors of health status and life satisfaction in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1998, 79:395-401. doi: http://dx.doi.org/10.1016/S0003-9993(98)90139-3 PMID:9552104 Charlifue S, Gerhart K. Changing psychosocial morbidity in people aging with spinal cord injury. NeuroRehabilitation, 2004, 19:1523. PMID:14988584 Livneh H, Antonak RF. Psychosocial adjustment to chronic illness and disability. Gaithersburg, MD, Aspen Publishers, 1997. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http:// dx.doi.org/10.1038/sc.2011.182 PMID:22270190 Krause JS. Aging, life satisfaction, and self-reported problems among participants with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2010, 15:34-40. doi: http://dx.doi.org/10.1310/sci1503-34 Moos RH, Holahan CJ. Adaptive tasks and methods of coping with illness and disability. In: Martz E, Livneh H, eds. Coping with chronic illness and disability: theoretical, empirical and clinical aspects. New York, NY, Springer, 2007. van Leeuwen CMC et!al. Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review. Spinal Cord, 2012, 50:174-187. PMID:22042298 van Lankveld W, van Diemen T, van Nes I. Coping with spinal cord injury: tenacious goal pursuit and flexible goal adjustment. Journal of Rehabilitation Medicine, 2011, 43:923-929. PMID:21947183 Chappell P, Wirz S. Quality of life following spinal cord injury for 20−40 year old males living in Sri Lanka. Asia Pacific Disability Rehabilitation Journal, 2003, 14:162-178. Salick EC, Auerbach CF. From devastation to integration: adjusting to and growing from medical trauma. Qualitative Health Research, 2006, 16:1021-1037. doi: http://dx.doi.org/10.1177/1049732306292166 PMID:16954523
154
Κεφάλαιο 6
Συμπεριφορές, σχέσεις και προσαρμογή
167. Chau L et!al. Women living with a spinal cord injury: perceptions about their changed bodies. Qualitative Health Research, 2008, 18:209-221. doi: http://dx.doi.org/10.1177/1049732307312391 PMID:18216340 168. Slivinski J, Mehta S, Teasell RW. Depression following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010. 169. Orenczuk S et al. Depression following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010. 170. Mehta S et!al. An evidence-based review of the effectiveness of cognitive behavioral therapy for psychosocial issues postspinal cord injury. Rehabilitation Psychology, 2011, 56:15-25. doi: http://dx.doi.org/10.1037/a0022743 PMID:21401282 171. King C, Kennedy P. Coping effectiveness training for people with spinal cord injury. The British Journal of Clinical Psychology, 1999, 38:5-14. doi: http://dx.doi.org/10.1348/014466599162629 PMID:10212733 172. Kennedy P et!al. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. The British Journal of Clinical Psychology, 2003, 42:41-52. doi: http://dx.doi.org/10.1348/014466503762842002 PMID:12675978 173. Duchnick JJ, Letsch EA, Curtiss G. Coping effectiveness training during acute rehabilitation of spinal cord injury/dysfunction: a randomized clinical trial. Rehabilitation Psychology, 2009, 54:123-132. doi: http://dx.doi.org/10.1037/a0015571 PMID:19469601 174. Sin NL, Lyubomirsky S. Enhancing well-being and alleviating depressive symptoms with positive psychology interventions: a practice-friendly meta-analysis. Journal of Clinical Psychology, 2009, 65:467-487. doi: http://dx.doi.org/10.1002/ jclp.20593 PMID:19301241 175. Peter C et!al. Psychological resources in spinal cord injury: a systematic literature review. Spinal Cord, 2012, 50:188-201. doi: http://dx.doi.org/10.1038/sc.2011.125 PMID:22124343 176. Zahl ML et!al. SCI/D forum to increase active living: the effect of a self-efficacy and self-affirmation based SCI/D forum on active living in adults with spinal cord injury/disease. SCI Psychosocial Process, 2008, 21:5-13. 177. Rose A et!al. The effect of a self-efficacy based forum on life satisfaction for individuals with spinal cord injury or disease. Annual in Therapeutic Recreation, 2008, 16:49-56. 178. Kennedy P, Taylor N, Hindson L. A pilot investigation of a psychosocial activity course for people with spinal cord injuries. Psychology Health and Medicine, 2006, 11:91-99. doi: http://dx.doi.org/10.1080/13548500500330494 PMID:17129898 179. Latimer AE, Ginis KAM, Arbour KP. The efficacy of an implementation intention intervention for promoting physical activity among individuals with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology, 2006, 51:273-280. doi: http://dx.doi.org/10.1037/0090-5550.51.4.273 180. Arbour-Nicitopoulos KP, Ginis KA, Latimer AE. Planning, leisure-time physical activity, and coping self-efficacy in persons with spinal cord injury: a randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 2009, 90:2003-2011. doi: http://dx.doi.org/10.1016/j.apmr.2009.06.019 PMID:19969161 181. Tate DG, Forchheimer M. Enhancing community reintegration after inpatient rehabilitation for persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 1998, 4:42-55. doi: http://dx.doi.org/10.1310/FK0R-2K94-BN99-52FY 182. Wiles R, Cott C, Gibson BE. Hope, expectations and recovery from illness: a narrative synthesis of qualitative research. Journal of Advanced Nursing, 2008, 64:564-573. doi: http://dx.doi.org/10.1111/j.1365-2648.2008.04815.x PMID:19120569 183. Kortte KB et!al. Positive psychological variables in the prediction of life satisfaction after spinal cord injury. Rehabilitation Psychology, 2010, 55:40-47. doi: http://dx.doi.org/10.1037/a0018624 PMID:20175633 184. Payne JA. The contribution of group learning to the rehabilitation of spinal cord injured adults. Rehabilitation Nursing, 1993, 18:375379. doi: http://dx.doi.org/10.1002/j.2048-7940.1993.tb00792.x PMID:7938893 185. House LA et!al. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives. Spinal Cord, 2009, 47:882-886. doi: http://dx.doi.org/10.1038/sc.2009.64 PMID:19528994 186. SCIA. Spinal Cord Injuries Australia (http://scia.org.au, accessed 5 April 2013). 187. Killeen G. Taxi discrimination complaint settled. Accord, Winter 2011, pp. 10−11 (http://scia.org.au/images/SCIA-media/ publications/accord/Accord%202011%20Winter.pdf?bcsi_scan_97961A1EAF8C426F=x54bUmSQODtKN2kJiJYmnwwV7N5V AAAAtIQqDg==&bcsi_scan_filename=Accord%202011%20Winter.pdf, accessed 20 February 2012). 188. ESCIF. European Spinal Cord Injury Federation (http://www.escif.org/, accessed 20 March 2012).
155
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
GSCICN. Global Spinal Cord Injury Consumer Network (http://globalsci.net/, accessed 19 April 2012). Livability Ireland (http://www.livability.ie, accessed 17 April 2013). Motivation. Freedom through mobility (http://www.motivation.org.uk, accessed 26 April 2013). Gilson SF, Tusler A, Gill C. Ethnographic research in disability identity: self-determination and community. Journal of Vocational Rehabilitation, 1997, 9:7-17. doi: http://dx.doi.org/10.1016/S1052-2263(97)00017-2 193. Campbell J, Oliver M. Disability politics: understanding our past, changing our future. London, Macmillan, 1996. 194. Ville I et!al. Disability and a sense of community belonging. A study among tetraplegic spinal-cord-injured persons in France. Social Science & Medicine, 2003, 56:321-332. doi: http://dx.doi.org/10.1016/S0277-9536(02)00030-8 PMID:12473317 195. Manns PJ, Chad K. Determining the relation between quality of life, handicap, fitness, and physical activity for persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1566-1571. doi: http://dx.doi.org/10.1016/ S00039993(99)90331-3 PMID:10597807 196. Monnazzi G. Paraplegics and sports: a psychological survey. International Journal of Sport Psychology, 1982, 13:85-95. 197. Hanson CS, Nabavi D, Yuen HK. The effect of sports on level of community integration as reported by persons with spinal cord injury. The American Journal of Occupational Therapy, 2001, 55:332-338. doi: http://dx.doi.org/10.5014/ ajot.55.3.332 PMID:11723975 198. Madorsky JGB, Madorsky A. Wheelchair racing: an important modality in acute rehabilitation after paraplegia. Archives of Physical Medicine and Rehabilitation, 1983, 64:186-187. PMID:6838349 199. McVeigh SA et!al. Influence of sport participation on community integration and quality of life: a comparison between sport participants and non-sport participants with spinal cord injury. The Journal of Spinal Cord Medicine, 2009, 32:115124. PMID:19569458 200. Martin Ginis KA et!al. Physical activity and subjective well-being among people with spinal cord injury: a meta-analysis. Spinal Cord, 2010, 48:65-72. doi: http://dx.doi.org/10.1038/sc.2009.87 PMID:19581918 201. Slater D, Meade MA. Participation in recreation and sports for persons with spinal cord injury: review and recommendations. NeuroRehabilitation, 2004, 19:121-129. PMID:15201471 202. Tasiemski T, Brewer BW. Athletic identity, sport participation and psychological adjustments in people with spinal cord injury. Adapted Physical Activity Quarterly; APAQ, 2011, 28:233-250. PMID:21725116 203. Anneken V et!al. Influence of physical exercise on quality of life in individuals with spinal cord injury. Spinal Cord, 2010, 48:393-399. doi: http://dx.doi.org/10.1038/sc.2009.137 PMID:19841634 204. Wu SK, Williams T. Factors influencing sport participation among athletes with spinal cord injury. Medicine and Science in Sports and Exercise, 2001, 33:177-182. doi: http://dx.doi.org/10.1097/00005768-200102000-00001 PMID:11224802 205. Cooper M. Come, fly with me! Sports N’Spokes, 2004, 30:8-13. 206. Martin B. Bike on! Sports N’Spokes, 2001, 27:43-49. 207. Thompson M. Flip pin’out. Sports N’Spokes, 1999, 25:16-18. 208. Motivation. The affordable, quality sports wheelchair 2011. (http://www.motivation.org.uk/sports/sports-wheelchair, accessed 14 April 2011).
189. 190. 191. 192.
156
Κεφάλαιο 7 Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης
157
"Με την επιστροφή μου στο κοινωνικό περιβάλλον μετά από μερικούς μήνες στο νοσοκομείο και στο τμήμα αποκατάστασης, ήρθα αντιμέτωπος με διάφορες προκλήσεις. Πρώτον, δεν μπορούσα να έχω πρόσβαση στον εργασιακό μου χώρο, που ήταν στον τρίτο όροφο ενός πενταώροφου κτιρίου. Δεν μπορούσα να χρησιμοποιήσω τις σκάλες και επιπλέον δεν υπήρχαν ανελκυστήρες. Δεύτερον, δεν μπορούσα να έχω πρόσβαση σε διάφορες υπηρεσίες, λόγω του τρόπου που είναι κατασκευασμένα διάφορα κτίρια στην κοινότητά μου. Έπρεπε να διανύω μεγάλες αποστάσεις σε αναζήτηση προσβάσιμων χώρων ώστε να εξυπηρετηθώ. Είχα χάσει το αυτοκίνητό μου όταν πυροβολήθηκα, και γι 'αυτό έπρεπε να βασίζομαι σε μέσα μαζικής μεταφοράς. Επίσης πολλοί ιδιώτες δεν ήταν πρόθυμοι να φιλοξενήσουν ένα άτομο σε αναπηρικό αμαξίδιο. Πολλά πρέπει να γίνουν από την κυβέρνηση ώστε να εφαρμοστούν οι νόμοι σε αυτούς τους τομείς". (Ρόμπερτ, Ουγκάντα) "Η δυνατότητα πρόσβασης στα νοσοκομεία αποτελεί ένα άλλο πρόβλημα. Ενώ όλα τα μεγάλα νοσοκομεία ήταν προσβάσιμα στα αναπηρικά αμαξίδια, αυτό δεν συνέβαινε σε κλινικές, όπως αυτές του οδοντιάτρου, του οφθαλμίατρου, κλπ. Κάποιες μάλιστα ήταν στον δεύτερο ή τον τρίτο όροφο κτιρίων που δεν είχαν ανελκυστήρες. Σε αυτές τις περιπτώσεις, έπρεπε να μεταφερθώ με το αναπηρικό αμαξίδιο μου από τις σκάλες, το οποίο ήταν και δύσκολο και επικίνδυνο, κάτι που αρκετές φορές ήταν απαραίτητο να γίνει. Οι τουαλέτες σε πολλά νοσοκομεία δεν ήταν προσβάσιμες για αναπηρικό αμαξίδιο. Υποθέτω ότι η στάση απέναντι στην έλλειψη προσβάσιμης τουαλέτας ήταν: "Δεν υπάρχουν πολλοί ασθενείς με Κάκωση Νωτιαίου Μυελού (ΚΝΜ), οπότε γιατί να σπαταλήσουμε χώρο;"" (Alexis, Ινδία) "Όταν για κάποιο λόγο βγαίνω έξω με το ηλεκτροκίνητο αμαξίδιο μου, θα μπορούσα να πάρω ένα ταξί, τις δημόσιες συγκοινωνίες ή ένα τρένο υψηλής ταχύτητας. Ωστόσο, αυτές οι επιλογές είναι ακριβές, ακόμη και μετά την έκπτωση των ατόμων με αναπηρία. Υπάρχουν μόνο μερικά δημόσια λεωφορεία με ανελκυστήρα, αλλά πρέπει να παραγγελθούν μια εβδομάδα νωρίτερα. Έτσι, σε περίπτωση έκτακτης ανάγκης, δεν μπορείς να εξαρτάσαι από τη δυνατότητα χρήσης ενός δημόσιου λεωφορείου για τη μεταφορά. Επιπλέον, μόνο λίγες γραμμές έχουν στάσεις λεωφορείων χωρίς σκαλοπάτια. Εξαιτίας αυτού, εγώ συνήθως χρησιμοποιώ ταξί για να μεταφερθώ με πολύ ακριβό κόστος". (Co-Han Yee,, Ταϊβάν, Κίνα) "Είναι πολύ δύσκολο για μένα να βγω από το σπίτι μου. Τα πεζοδρόμια δεν είναι ομαλά και είναι σε κακή κατάσταση. Εγώ πάντα εξαρτώμαι από άλλους ανθρώπους για να μετακινηθώ. Οι δημόσιες συγκοινωνίες στο τμήμα της πόλης όπου ζω είναι σε κακή κατάσταση και είναι πολύ δύσκολο για μένα να τις χρησιμοποιήσω ακόμη και με βοήθεια. Δεν μπορώ να είμαι ανεξάρτητος. Πώς μπορώ να συμμετάσχω σε μια κοινωνία με αυτή την μορφή; Αισθάνομαι απογοητευμένος. Παίρνω κοκαΐνη και μαριχουάνα. Παίζω κιθάρα". (Diego, Αργεντινή) "Ξανάχτισα το σπίτι μου μετά το σεισμό αφού το αρχικό σπίτι είχε καταστραφεί ολοκληρωτικά. Αλλά εγώ και η οικογένειά μου δεν είχαμε ιδέα πώς να διαμορφώσουμε κατάλληλα το περιβάλλον για τις μετακινήσεις μου. Η ΜΚΟ προσάρμοσε την τουαλέτα μου και την κουζίνα ώστε να καταστεί ευκολότερη η μετακίνηση μου. Δεν θα μπορούσα καν να πάω στο αποχωρητήριο πριν από την προσαρμογή, αλλά τώρα μπορώ να κάνω μπάνιο μόνος μου. Μπορώ να μαγειρέψω ενώ κάθομαι στο αναπηρικό καροτσάκι. Τα πάντα είναι βολικά και δεν συναντώ σημαντικά προβλήματα όταν είμαι στο σπίτι μου". (Chen, Κίνα) 158
Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης. Το φυσικό περιβάλλον μπορεί είτε να διευκολύνει είτε να λειτουργήσει ως εμπόδιο στη συμμετοχή των ατόμων με κάκωση νωτιαίου μυελού (ΚΝΜ). Η δυνατότητα πρόσβασης είναι μια από τις βασικές αρχές που αναφέρονται στο άρθρο 3 της σύμβασης για τα δικαιώματα των Ατόμων με Αναπηρία (CRPD), ενώ το άρθρο 9 ειδικότερα επισημαίνει τη σημασία της δυνατότητας πρόσβασης σε κτίρια και μέσα μαζικής μεταφοράς (1). Η δυνατότητα πρόσβασης υπογραμμίζει το δικαίωμα να ζουν ανεξάρτητα στην κοινότητα (άρθρο 19) και να συμμετέχουν πλήρως σε όλους τους τομείς της ζωής. Αποτυχία να εξασφαλιστεί η δυνατότητα πρόσβασης αποτελεί διάκριση. Το παρόν κεφάλαιο επικεντρώνεται στη στέγαση, τις μεταφορές και τα δημόσια καταλύματα που είναι αναγκαία για την επίτευξη αυτών των σκοπών. Το φυσικό περιβάλλον και τα μέσα μαζικής μεταφοράς είναι μεταξύ των βασικών περιβαλλοντικών εμποδίων για τα άτομα με κάκωση νωτιαίου μυελού (2-6). Τα αποδεικτικά στοιχεία για την επίδραση αυτών των παραγόντων στη συμμετοχή εξακολουθούν να είναι περιορισμένα (7). Τα μέτρα προσβασιμότητας πρέπει να ανταποκρίνονται σε όλο το φάσμα των αναγκών των ατόμων με ΚΝΜ: το να είναι ένα σπίτι προσβάσιμο σε αναπηρική αμαξίδιο είναι ζωτικής σημασίας, αλλά, αν η προσβασιμότητα φτάνει μέχρι την πόρτα του σπιτιού και το άτομο δεν μπορεί να κινηθεί στα πλαίσια της κοινότητας, να έχει πρόσβαση στα μέσα μεταφοράς και να έχει συμμέτοχη στην εκπαιδευτική διαδικασία, στην απασχόληση ή σε άλλες κοινωνικές δραστηριότητες, τότε το περιβάλλον εξακολουθεί να αποτελεί εμπόδιο. Οι στρατηγικές προσβασιμότητας περιορίζονται από το κόστος και τους ανθρώπινους πόρους, αλλά η σταδιακή βελτίωση είναι πάντα εφικτή (8). Για τις χώρες που έχουν επικυρώσει τη συνθήκη για τα δικαιώματα των ατόμων με αναπηρία, στοιχεία προόδου προς την κατεύθυνση της πλήρους προσβασιμότητας απαιτούνται υπό την έννοια της "σταδιακής υλοποίησης". Η εξασφάλιση της δυνατότητας πρόσβασης για τα άτομα με ΚΝΜ διευκολύνει τις μετακινήσεις και για όλους τους υπόλοιπους ανθρώπους.
7
Φραγμοί για τα άτομα με κάκωση νωτιαίου μυελού Η κοινωνική επανένταξη θα εξαρτηθεί από το βαθμό στον οποίο ένα άτομο με ΚΝΜ θα μπορέσει να ξεπεράσει τους φραγμούς του περιβάλλοντος. Στην ενότητα αυτή, αναδεικνύονται προοδευτικά τα περιβαλλοντικά εμπόδια, ξεκινώντας από τη στέγαση - στην οποία ένα άτομο με ΚΝΜ θα πρέπει να επιστρέψει μετά την αποκατάσταση - συνεχίζοντας με τη μεταφορά, η οποία είναι ζωτικής σημασίας για τη συμμετοχή στην κοινότητα και καταλήγοντας στα δημόσια κτίρια - όπως τα σχολεία και οι χώροι εργασίας - όπου η πρόσβαση είναι αναγκαία για την εκπλήρωση των δικαιωμάτων στην εκπαίδευση και την απασχόληση. 159
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Στέγαση Η κατοικία αποτελεί το κυρίως περιβάλλον στη ζωή του ανθρώπου (9-11). Άτομα με ΚΝΜ, με την έξοδο από την κλινική αποκατάστασης μπορεί να αντιμετωπίσουν προβλήματα αν η κατοικία τους έχει εμπόδια, όπως σκάλες, μικρά μπάνια και μη προσβάσιμες κουζίνες (12-14), τα οποία στην πραγματικότητα τους κάνουν "φυλακισμένους στα ίδια τους τα σπίτια" (15). Το αποτέλεσμα μπορεί να είναι αυτό που συνήθως ονομάζεται "bed-blocking", όταν ασθενείς που πρέπει να πάνε στο σπίτι αναγκάζονται να μείνουν στο νοσοκομείο λόγω ανεπαρκούς προσβασιμότητας της κατοικίας (16, 17). Από τα περιορισμένα διαθέσιμα δεδομένα που υπάρχουν, προκύπτει ότι η μη κάλυψη της ανάγκης για προσβάσιμη κατοικία αποτελεί παγκόσμιο πρόβλημα για τα άτομα με αναπηρίες, ιδιαίτερα για άτομα με μειωμένη κινητικότητα, όπως αυτά με ΚΝΜ. Τα στοιχεία από έρευνες στη νότια Αφρική δείχνουν ότι οι άνθρωποι με αναπηρία ζουν σε κατοικίες γενικά κατώτερες από εκείνες των ατόμων χωρίς αναπηρία (18). Μελέτες σε διάφορες περιοχές του κόσμου δείχνουν ότι στις περισσότερες χώρες χαμηλού εισοδήματος, πολύ λίγα άτομα με κινητικά προβλήματα και άλλους περιορισμούς έχουν ανεξάρτητη κατοικία, αν και πρέπει να σημειωθεί ότι το να ζουν μαζί με τις οικογένειες τους είναι το πιο σύνηθες για όλους σε αυτές τις συνθήκες (19, 20). Ακόμη και σε χώρες όπου υπάρχουν υψηλά επίπεδα ιδιοκατοίκησης, η οικονομική υποστήριξη για οικιακές προσαρμογές μπορεί να είναι ανεπαρκείς (21). Στο Ηνωμένο Βασίλειο, για παράδειγμα, η έρευνα έχει δείξει ότι η πρόβλεψη για τα άτομα με αναπηρίες είναι ανεπαρκής από την άποψη των προσβάσιμων κατοικιών και της χρηματοδότησης του κόστους προσαρμογής (22-24). Περίπου 78.000 χρήστες αναπηρικού αμαξιδίου στο Ηνωμένο Βασίλειο εκτιμάται ότι έχουν ανεπαρκείς στεγαστικές ανάγκες. Εάν ένα άτομο με ΚΝΜ δεν μπορεί να αντέξει τα οικονομικά βάρη του δικού του σπιτιού και δεν υφίσταται προοπτική στέγασης με συγγενείς, τότε η κοινωνική στέγαση μπορεί να είναι μια εναλλακτική λύση (26, 27). Στην Ευρώπη, η προσφορά κυμαίνεται από λιγότερο του 2% του συνολικού αποθέματος κατοικιών (Εσθονία, Ελλάδα, Ισπανία) έως 35% (Ολλανδία) (28). Η ζήτηση για κοινωνική στέγαση είναι γενικά 160
πολύ μεγαλύτερη από την προσφορά (26). Ακόμα και όταν η κοινωνική στέγαση είναι διαθέσιμη, είναι σπάνια επαρκώς προσβάσιμη. Τα ποσοστά παραμένουν χαμηλά ακόμα και όταν η κοινωνική στέγαση λειτουργεί με ποσόστωση για τα άτομα με αναπηρία, όπως σε χώρες όπως το Ελ Σαλβαδόρ, η Ινδία και η Ταϊλάνδη (19, 20). Κατά ειρωνικό τρόπο, άτομα χωρίς αναπηρία συχνά καταλαμβάνουν προσβάσιμη κοινωνική στέγαση: στην Αγγλία μόνο το 22% των κατοικιών με πρόσβαση για αναπηρικό αμαξίδιο χρησιμοποιούνταν από ενοίκους που είναι χρήστες αναπηρικών αμαξιδίων.
Μεταφορικά μέσα Η πρόσβαση στα μέσα μαζικής μεταφοράς (ΜΜΜ) είναι απαραίτητη για τη συμμετοχή σε εκπαιδευτικές, επαγγελματικές και τις εκτός κατοικίας κοινωνικές δραστηριότητες. Οι δημόσιες συγκοινωνίες είναι συχνά απρόσιτες σε ανθρώπους με κάκωση νωτιαίου μυελού (6, 29). Ράμπες, αναβατόρια και συστήματα ασφαλείας μπορεί να απουσιάζoυν, να είναι κακοσυντηρημένα ή μη ασφαλή (30) και το προσωπικό των ΜΜΜ να μην είναι εκπαιδευμένο στις διαδικασίες προσβασιμότητας (31). Στα λεωφορεία σταθερής τροχιάς και τους σιδηροδρόμους, ο επιθυμητός προορισμός μπορεί να μην είναι κοντά στις στάσεις των λεωφορείων ή των τρένων (30). Στα υπόλοιπα δημόσια μέσα μεταφοράς που λειτουργούν με βάση τη ζήτηση, όπως ταξί με πρόσβαση σε αναπηρικό αμαξίδιο, μπορεί τα ραντεβού να χρειάζεται να κλείνονται αρκετές ημέρες πριν, μειώνοντας έτσι την ευελιξία (30). Ένα ιδιωτικό αυτοκίνητο μπορεί να αποτελεί εναλλακτική λύση εάν υπάρχουν επαρκείς πόροι (οικονομικοί και τεχνικοί), δεδομένου ότι το κόστος των τροποποιημένων συστημάτων οδήγησης ή των προσαρμογών των οχημάτων μπορεί να είναι απαγορευτικό. Αεροδρόμια και αεροπορικές εταιρείες θα πρέπει να έχουν διατάξεις που επιτρέπουν τους ανθρώπους με ΚΝΜ να ταξιδεύσουν. Ωστόσο, τουαλέτες των αεροσκαφών είναι συχνά απρόσιτες και, σε ορισμένες περιπτώσεις, υπάρχουν κανονισμοί που εμποδίζουν τα άτομα να ταξιδεύουν μόνα τους σε περίπτωση που δεν μπορούν να μετακινηθούν ανεξάρτητα (32). Πίσω από αυτά τα πρακτικά προβλήματα υπάρχουν συστημικές ελλείψεις. Για παράδειγμα, μια διακοπή
Κεφάλαιο 7
Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης.
στην "ταξιδιωτική αλυσίδα" (δηλαδή, όταν ένα τμήμα του ταξιδιού δεν μπορεί να πραγματοποιηθεί) μπορεί να σημαίνει ότι οι χρήστες αμαξιδίου δεν θα μπορούν να φτάσουν στον προορισμό τους (33). Ακόμη και όταν η νομοθεσία ρητά επιβάλλει την προσβασιμότητα για τα μέσα μαζικής μεταφοράς, μπορεί να μην είναι αποτελεσματική, ιδίως στις αναπτυσσόμενες χώρες, επειδή δεν υπάρχουν επαρκείς πόροι για την εφαρμογή της (34). Αν οι κανονισμοί απαιτούν από τις εταιρείες ταξί κατά την αγορά νέων ημιφορτηγών να εξασφαλιστεί ότι είναι προσβάσιμα για άτομα με αναπηρία, μια εταιρεία μπορεί να το αποφύγει αυτό με την αγορά μόνο μεταχειρισμένων ημιφορτηγών (35). Από τη στιγμή που προσβάσιμα ταξί και μικρά λεωφορεία από ειδικές υπηρεσίες μεταφορών είναι ακριβά για αγορά, μπορεί να είναι μια πρόκληση να κάνουν την υπηρεσία αποδοτικότερη και οικονομικά ανεκτή. (35-37).
Δημόσια κτίρια Η αδυναμία πρόσβασης των δημόσιων κτιρίων μπορεί να εμποδίσει τη συμμετοχή των ατόμων με ΚΝΜ (38, 39). Μελέτες δείχνουν ότι οι πέντε κύριες περιοχές στις οποίες η προσβασιμότητα είναι απαραίτητη για τη συμμετοχή των χρηστών αναπηρικών αμαξιδίων είναι οι χώροι στάθμευσης, οι διαδρομές προς δημόσια κτίρια, οι ράμπες, οι εισόδοι και οι τουαλέτες. (40, 41). Για παράδειγμα, μια έρευνα στη Νότια Αφρική διαπίστωσε ότι λιγότερο από το 10% των νοσοκομείων είχαν πλήρως προσβάσιμη τουαλέτα για άτομα με αναπηρία (42). Συχνά οι πόρτες είναι πάρα πολύ βαριές για να ανοίγουν εύκολα από άτομα με ΚΝΜ, μπορεί να απουσιάζουν οι απαραίτητες χειρολαβές για άτομα που χρησιμοποιούν πατερίτσες. Τα ανώμαλα πεζοδρόμια ή κροκάλες, τα στενά δρομάκια, οι απότομες κλίσεις εδάφους και η έλλειψη κράσπεδων, όλα αυτά περιορίζουν την προσβασιμότητα στα δημόσια κτήρια (43-45). Μη ασφαλείς οδικές διασταυρώσεις και πεζοδρόμια, συμβάλλουν σε υψηλό ποσοστό στους τραυματισμούς που προκαλούνται σε χρήστες αναπηρικών αμαξιδίων από αυτοκίνητα (46-48). Οι πρόοδοι στην αντιμετώπιση των θεμάτων προσβασιμότητας είναι συχνά άνισες. Σε ορισμένες πόλεις στις ΗΠΑ, τα ποσοστά συμμόρφωσης για τα κτίρια που κατασκευάστηκαν μετά το 1980 ήταν πολύ υψηλό
- 97% σε μια πόλη (49). Αλλού, όμως, όπως στην Τουρκία, τα Ηνωμένα Αραβικά Εμιράτα και τη Ζιμπάμπουε, τα ποσοστά είναι λιγότερο από το μισό, και η πρόοδος προς την προσβασιμότητα φαίνεται να είναι πολύ αργή (50-52). Μερικές φορές η κατάσταση είναι δραματική: στο Ιμπαντάν της Νιγηρίας, λιγότερο από το 18% των δημόσιων κτιρίων βρέθηκαν να είναι προσβάσιμα για αμαξίδια (53), ενώ στην Μπανγκόκ της Ταϊλάνδης, μια έρευνα διαπίστωσε ότι σχεδόν κανένα δημόσιο ή εμπορικό κτίριο ήταν πλήρως προσβάσιμο σε χρήστες αμαξιδίων (54). Όπως και με τις μεταφορές, δεν είναι αρκετό να υπάρχουν νόμοι, πολιτικές και πρότυπα, εφόσον δεν εφαρμόζονται. Σε μια πρόσφατη έρευνα σε 36 χώρες της Ασίας και του Ειρηνικού, 25 είχαν κανονισμούς σχετικούς με την προσβασιμότητα στα δημόσια κτίρια και τις μεταφορές, αλλά κανένας από αυτούς τους νόμους και τα πρότυπα δεν ήταν υποχρεωτικά ή υποστηριζόμενα από ελεγκτικούς μηχανισμούς (55). Σε μια έρευνα των Ηνωμένων Εθνών σε 114 χώρες διαπιστώθηκε ότι, ενώ σχεδόν οι μισές είχαν πολιτικές προσβασιμότητας στα δημόσια κτίρια, οι περισσότερες δεν διέθεταν δημόσια εκπαιδευτικά προγράμματα που να εξηγούν την προσβασιμότητα ενώ πολλές δεν διαθέτουν χρηματοδοτικούς πόρους για υλοποίηση των πολιτικών αυτών ή δεν έχουν καμία επίσημη υπηρεσία που να επιβάλλει ή να παρακολουθεί αυτές τις πολιτικές. Κατά τομείς, στους παράγοντες που στέκονται εμπόδιο στη δυνατότητα πρόσβασης περιλαμβάνονται: ■ η απουσία των ρυθμιστικών πλαισίων και προτύπων προσβασιμότητας, ■ η έλλειψη μηχανισμών επιβολής, ■ η έλλειψη οικονομικών πόρων ή πολιτικών δημόσιων συμβάσεων που να εστιάζονται στην προσβασιμότητα ■ θεσμικοί περιορισμοί (όπως έλλειψη συνεργασίας ανάμεσα στις υπηρεσίες δημόσιου-ιδιωτικού τομέα, ή ανεπαρκής ικανότητα σχεδιασμού), ■ μια γενική έλλειψη συνειδητοποίησης για την ανάγκη και τα οφέλη της προσβασιμότητας σε όλα τα επίπεδα ■ η απουσία συμμετοχής των χρηστών στην ανάπτυξη και την εφαρμογή της πολιτικής
161
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Αντιμετωπίζοντας τα εμπόδια Σχεδόν όλα τα εμπόδια που οι άνθρωποι με ΚΝΜ αντιμετωπίζουν καθημερινά στο φυσικό περιβάλλον, τις μεταφορές και τις άλλες εγκαταστάσεις και υπηρεσίες που είναι ανοικτές ή παρέχονται στη κοινωνία, τόσο στις αστικές όσο και στις αγροτικές περιοχές, μπορούν να αντιμετωπιστούν. Για να γίνει αυτό είναι διαθέσιμες καλές, καινοτόμες και οικονομικά εφικτές πρακτικές.
Γενικά μέτρα Τα ακόλουθα μέτρα αναφέρονται στους περιβαλλοντικούς τομείς της στέγασης, των μεταφορών και των δημόσιων κτηρίων. Η υιοθέτηση ενός παγκόσμιου σχεδιασμού παρέχει τη δυνατότητα όχι μόνο να εξασφαλιστεί η πρόσβαση των ατόμων με αναπηρία, αλλά και να ωφεληθούν οι ηλικιωμένοι, οι γονείς και άλλα άτομα με κινητικές δυσκολίες (14, 33). Η ανάπτυξη προτύπων προσβασιμότητας μπορεί να εξασφαλίσει πρόσβαση σε άτομα που χρησιμοποιούν αναπηρικό αμαξίδιο, συμπεριλαμβανομένων των ατόμων με ΚΝΜ. Η CRPD απαιτεί τα κράτη μελή να αναπτύξουν, να διαδώσουν και να ελέγχουν την εφαρμογή των ελάχιστων προδιαγραφών για τη δημόσια στέγαση (1). Για τους χρήστες αναπηρικού αμαξιδίου αυτά θα πρέπει να περιλαμβάνουν την πρόσβαση σε κτίρια - ράμπες, ασφαλείς διαβάσεις οδών, και προσβάσιμες εισόδους – καθώς επίσης και την προσβασιμότητα στο εσωτερικό των κτιρίων, ιδιαίτερα στις τουαλέτες. Αν και η άρση σημαντικών εμποδίων προσφέρει σημαντική διαφορά στα άτομα που χρησιμοποιούν αναπηρικά αμαξίδια, η πλήρης πρόσβαση θα πρέπει να παραμένει πάντα ο στόχος. Λεπτομερείς προδιαγραφές είναι άμεσα διαθέσιμες τόσο σε σε εθνικό όσο και σε διεθνές επίπεδο (π.χ. (41, 56)). Αυτό βαθμιαία περιλαμβάνει ομάδες χαμηλού και μεσαίου εισοδήματος. Στην Ουγκάντα, για παράδειγμα, η Εθνική Ένωση των Ατόμων με Αναπηρία της Ουγκάντα, μαζί με το Υπουργείο Ισότητας, Εργασίας και Κοινωνικής Ανάπτυξης παράγουν πρότυπα πρόσβασης (57). Τα πρότυπα ενδέχεται να χρειαστεί να αναθεωρηθούν για να ανταποκριθούν σε τεχνολογικές αλλαγές και ανάγκες (π.χ. ο σχεδιασμός του αναπηρικού αμαξιδίου, η συνεχής αύξηση της παχυσαρκίας). 162
Επιβολή των κανόνων προσβασιμότητας. Στις ΗΠΑ, εθελοντικά πρότυπα δημιουργήθηκαν με νόμο το 1961, αλλά σύντομα αποδείχθηκαν αναποτελεσματικά και αντικαταστάθηκαν με υποχρεωτικά πρότυπα το 1968 (58), τα οποία ενισχύθηκαν μια δεκαετία αργότερα, με μία διαδικασία κατά την οποία τα άτομα θα μπορούσαν να υποβάλουν παράπονα για δημόσια κτίρια που ήταν απρόσιτα. Η προσέγγιση αυτή ενισχύθηκε περαιτέρω με τις διατάξεις της Πράξης του 1990 για τους Αμερικάνους με αναπηρία. Οι δήμοι και οι επιχειρήσεις τώρα έχουν ενσωματώσει την προσβασιμότητα στα σχέδια τους στις νέες κατασκευές ώστε να αποφευχθεί η προοπτική καταγγελιών. Για την επιβολή της απαιτείται μια αρμόδια υπηρεσία ή ένα άλλο κέντρο για την παρακολούθηση της συμμόρφωσης προς τα πρότυπα. Εμπλοκή των ατόμων με ΚΝΜ, μαζί με άλλες ομάδες ατόμων με αναπηρίες, στην ιεράρχηση επενδύσεων για προώθηση της πρόσβασης και παρακολούθηση της διατήρησης των αποτελεσμάτων πρόσβασης. Τα άτομα με αναπηρία θα πρέπει να συμμετέχουν στην ανάπτυξη των προτύπων, στον έλεγχο της πρόσβασης, στην διαπίστωση της συμμόρφωσης (π.χ. (59)), στην παρακολούθηση της πρόσβασης και στην εκστρατεία για βελτιώσεις (60). Το Συμβούλιο των Καναδών με αναπηρία, για παράδειγμα, εδώ και σχεδόν 30 χρόνια συνεργάστηκε με τις πόλεις και τις επαρχίες στην παρακολούθηση της εφαρμογής των προτύπων προσβασιμότητας και την παροχή συμβουλών σε θέματα όπως οι απαιτούμενοι χώροι των κτιρίων για την πρόσβαση των αναπηρικών αμαξιδίων (61). Στη Λατινική Αμερική, οι οργανώσεις των ατόμων με ειδικές ανάγκες, όπως του Μεξικού Libre Acceso και της Βραζιλίας Center for Independent Living προέβησαν σε δραστική εκστρατεία υπέρ της προσβασιμότητας στον τομέα των μεταφορών, συμμετείχαν στην ανάπτυξη και διάδοση των κατευθυντήριων γραμμών πρόσβασης, και προώθησαν την χρήση τους (62). Στην Ιαπωνία και στις ΗΠΑ τα άτομα με αναπηρίες έχουν διαδραματίσει κομβικό ρόλο στην παρακολούθηση της εφαρμογής της προσβασιμότητας μέσω ελέγχων και μέσω της συμβολής των στις διαβουλεύσεις (63). Εκπαίδευση των εμπλεκομένων με θέματα προ-
Κεφάλαιο 7
Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης.
σβασιμότητας να αντιμετωπίσουν τα άτομα με αναπηρία. Η ευαισθητοποίηση και η γνώση σχετικά με την προσβασιμότητα στο δημόσιο τομέα είναι ζωτικής σημασίας. Η εκπαίδευση στην ευαισθητοποίηση για θέματα αναπηρίας ή σε θέματα ισότητας των ατόμων με αναπηρία βοηθά στην αλλαγή στάσης και βελτιώνει τον σεβασμό προς τα άτομα με αναπηρία που χρησιμοποιούν τις εγκαταστάσεις. Βασικές τεχνικές πληροφορίες σχετικά με τις ανάγκες και τις λύσεις προσβασιμότητας είναι χρήσιμες για όσους αναπτύσσουν και επιβάλουν πολιτικές. Τα πανεπιστημιακά και ενδοϋπηρεσιακά εκπαιδευτικά προγράμματα κατάρτισης για αρχιτέκτονες, μηχανικούς και σχεδιαστές θα πρέπει να περιλαμβάνουν την εμπλοκή με τις αρχές και τις πρακτικές του παγκόσμιου σχεδιασμού και την προσβασιμότητα ως βασικό εκπαιδευτικό στοιχείο (60). Για παράδειγμα, με την εφαρμογή το 2008 της πράξης για τα άτομα με αναπηρία στη Μαλαισία τα πανεπιστήμια της χώρας έχουν ενθαρρυνθεί να εισαγάγουν προγράμματα "χωρίς αρχιτεκτονικά εμπόδια" για να ενθαρρύνουν την έρευνα, να διαδώσουν λύσεις προσβασιμότητας και να αυξήσουν την ευαισθητοποίηση του κοινού. Στην Κολομβία, το Εθνικό Πανεπιστήμιο ετοίμασε ένα εγχειρίδιο για την προσβασιμότητα στο δομημένο περιβάλλον και για τους τρόπους μεταφοράς (19). Οι ιδιωτικοί φορείς που προσφέρουν εγκαταστάσεις και υπηρεσίες που είναι ανοικτές ή παρέχονται στο κοινό πρέπει να λαμβάνουν υπόψη όλες τις πτυχές της προσβασιμότητας για τα άτομα με αναπηρία. Εμπορικές βιομηχανίες που ασχολούνται με την κατασκευή κατοικιών και επίπλων θα πρέπει να ενθαρρύνονται να εφαρμόσουν τις αρχές του γενικού σχεδιασμού στο δικό τους σχεδιασμό και τις αναπτυξιακές τους διαδικασίες, και να μοιραστούν αυτές τις πληροφορίες με τους αρμόδιους φορείς σε εθνικό επίπεδο (64, 65). Περαιτέρω έρευνα για το τι είναι αποτελεσματικό για τη βελτίωση της προσβασιμότητας είναι απαραίτητη. Παρά την εμπειρία σε επίπεδο καθολικού σχεδιασμού, εξακολουθούν να υπάρχουν κενά στις γνώσεις σχετικά με το τι είναι αποτελεσματικό για την αύξηση της προσβασιμότητας σε όλους τους τομείς, από τα σπίτια μέχρι τις κοινότητες. Γνωρίζουμε λίγα πράγματα για το πώς ακριβώς είναι το φυσικό περι-
βάλλον περιοριστικό, και πώς μπορεί να τροποποιηθεί για να διευκολυνθεί η συμμετοχή των ατόμων με αναπηρία (6, 7, 66- 69). Παρά το γεγονός ότι υπήρξαν κάποιες σημαντικές πρόοδοι, από τις πιο επείγουσες προτεραιότητες της έρευνας είναι η δημιουργία ενός αξιόπιστου και έγκυρου εργαλείου για την εκτίμηση του βαθμού στον οποίο το δομημένο περιβάλλον αποτελεί εμπόδιο για τα άτομα με κινητικά προβλήματα (3, 68, 70-74). Η εκτίμηση και μέτρηση του βαθμού αδυναμίας πρόσβασης (69) είναι το πρώτο βήμα για μια πιο τεκμηριωμένη προσέγγιση για την βελτίωση των προτύπων. Τα αποδεικτικά στοιχεία είναι επίσης απαραίτητα για να δείξουν τα οικονομικά και κοινωνικά οφέλη όταν τα περιβάλλοντα γίνονται προσβάσιμα.
Στέγαση Οι λύσεις στα εμπόδια σε σχέση με τη στέγαση πρέπει να περιλαμβάνουν τροποποιήσεις των υφιστάμενων κατοικιών (συμπεριλαμβανομένης της κοινωνικής στέγασης) και κατασκευή νέων προσβάσιμων κατοικιών. Οι κατάλληλες τροποποιήσεις των κατοικιών για τα άτομα με ΚΝΜ προσφέρουν ευρείας κλίμακας κοινωνικά οφέλη. Οι προσαρμογές των κατοικιών επιτρέπουν στα άτομα με ΚΝΜ να φεύγουν από τα νοσοκομεία και τα άλλα ιδρύματα περίθαλψης υψηλού κόστους. Επιπλέον, μπορούν επίσης να βοηθήσουν στο να μειωθεί η καταπόνηση των φροντιστών, στην πρόληψη των ατυχημάτων, στην βελτίωση της συνολικής υγείας και λειτουργικότητας και στη μείωση του κοινωνικού αποκλεισμού (14,75-78). Οι τροποποιήσεις στο οικιακό περιβάλλον για την διευκόλυνση της λειτουργικότητας μπορεί να ποικίλουν ευρέως και μπορεί να αλλάξουν με την πάροδο του χρόνου. Τα βασικά χαρακτηριστικά μπορεί να περιλαμβάνουν ράμπες, επιφάνειες δαπέδων χαμηλής τριβής και ελάττωση του ύψους των επιφανειών εργασίας. Πιο δαπανηρές τροποποιήσεις μπορούν να περιλαμβάνουν κυλιόμενες σκάλες ή ανελκυστήρες, καθώς και ένα σύστημα ενδοεπικοινωνίας ή κάποιο άλλο σύστημα ελέγχου (77). Οι εκτιμήσεις για την αλληλεπίδραση μεταξύ ατόμου και περιβάλλοντος στην πορεία του χρόνου ίσως να είναι αναγκαίες για να μεγιστοποιηθεί η λειτουργικότητα στο σπίτι (79). Είναι πάντοτε λογικό η επιθυμητή στέγαση να εναρμονίζεται με τις πολιτισμικές νόρμες 163
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
και να αποφεύγονται σχεδιαστικές λύσεις "ιδρυματικού χαρακτήρα" (24). Οι τροποποιήσεις στα υφιστάμενα καταλύματα μπορεί να είναι οικονομικά αποτελεσματικές. Μια μελέτη στη Σουηδία για άτομα με ΚΝΜ διαπίστωσε ότι μέχρι και το 30% των μετακινήσεων σε γηροκομεία θα μπορούσαν να είχαν αποφευχθεί εάν η στέγαση είχε γίνει προσβάσιμη (80), γεγονός που έχει διαπιστωθεί και στην Αγγλία (81). Η παροχή σε ιδιοκτήτες κατοικιών, σε οικοδεσπότες και ενοικιαστές "αναπηρικών επιδοτήσεων" για να χρηματοδοτήσουν στεγαστικές τροποποιήσεις σε ολόκληρο το Ηνωμένο Βασίλειο έχει αποδειχθεί ότι είναι οικονομικά αποδοτικότερο συγκριτικά με το κόστος μετακίνησης των ατόμων σε άλλες ρυθμίσεις διαβίωσης (82). Στον Καναδά, το Πρόγραμμα Βοήθειας για Οικιστική Αποκατάσταση ατόμων με Αναπηρίες, που το διαχειρίζεται ο Καναδικός Οργανισμός Στέγασης και Στεγαστικών Δανείων, προσφέρει οικονομική στήριξη για να μπορούν οι ιδιοκτήτες και οι οικοδεσπότες να πληρώνουν για τη βελτίωση της προσβασιμότητας των περιουσιών τους (83). Πληροφορίες που απαιτούνται για την προώθηση προσβάσιμης κατοικίας. Στις ΗΠΑ, το Πανεπιστήμιο της πολιτείας του Κολοράντο κυκλοφόρησε λεπτομερή τεχνικά φυλλάδια καθώς και μια ιστοσελίδα που μπορεί να χρησιμοποιηθεί από τους κατασκευαστές για να ενημερώνονται για τις ανάγκες χώρου και τις άλλες λεπτομέρειες που χρειάζονται για τροποποιήσεις που θα καθιστούν το σπίτι προσβάσιμο για αναπηρικό αμαξίδιο (84). Πόροι που διατίθενται από προγράμματα Αποκατάστασης στην κοινότητα (Community-based Rehabilitation, CBR) στην Ινδία, χρησιμοποιώντας κατευθυντήριες γραμμές για φροντίδα και ένταξη στην κοινότητα ατόμων με ΚΝΜ που παράγονται από την κυβέρνηση της Ινδίας και τις κατευθυντήριες οδηγίες αποκατάστασης στην κοινότητα του WHO (WHO-CBR guidelines) (85), παρέχει βασικές πληροφορίες σχετικά με χαμηλού κόστους οικιστικές τροποποιήσεις και απλές συμβουλές για τη βελτίωση της πρόσβασης για νοικοκυριά με χαμηλό εισόδημα. Η συνεργασία μεταξύ κυβέρνησης, οργανώσεων ατόμων με αναπηρία, καθώς και του ιδιωτικού τομέα (κερδοσκοπικού και μη) μπορεί να βοηθήσει για προσβάσιμη στέγαση. Από το 1997, η Εθνική Οικιστική Συνεταιριστική Ένωσης στην Κένυα έχει φέρει σε 164
επαφή την κυβέρνηση, τις ομάδες ατόμων με αναπηρία και τον ιδιωτικό τομέα για να προσδιορίσουν τις διαθέσιμες εκτάσεις, την προβλεπομένη τεχνική βοήθεια και τα δανειακά κεφάλαια για να διευκολυνθεί η κατασκευή προσβάσιμων κατοικιών (86). Η ανοικοδόμηση στη Σρι Λάνκα μετά τον σεισμό στον Ινδικό Ωκεανό και το τσουνάμι του 2004 είναι ένα άλλο παράδειγμα που δείχνει πώς η στέγαση μπορεί να γίνει προσβάσιμη για τα άτομα με χαμηλά εισοδήματα, όταν διαφορετικοί φορείς συνεργάζονται μεταξύ τους (βλέπε Πλαίσιο 7.1.). Η δημιουργία νέων προσβάσιμων κατοικιών στοιχίζει πολύ λιγότερο και αποτελεί καλύτερη επιλογή από την τροποποίηση των ήδη υπαρχουσών. Για να αυξηθούν τα αποθέματα των προσβάσιμων κατοικιών, απαιτείται μια ολοκληρωμένη και συντονισμένη προσπάθεια δημόσιου και ιδιωτικού τομέα που να συνδυάζει τον κανονισμό και τη χρηματοδότηση, να αναπτύσσει μια αγορά προσβάσιμων κατοικιών, να κινητοποιεί τον συντονισμό διάφορων φορέων, τις πληροφορίες και την προστασία από τις διακρίσεις (87, 88). Πολιτικές μπορεί να βοηθήσουν να γίνει ένα μέρος των νέων κατοικιών προσβάσιμο (10, 89). Στο Ηνωμένο Βασίλειο, μια απάντηση στη γήρανση του πληθυσμού - "Διαβίου Κατοικίες" - έχει δημιουργήσει κατοικίες που πληρούν ένα ευρύ φάσμα απαιτήσεων κινητικότητας με ελάχιστο πρόσθετο κόστος (90). Μια άλλη σημαντική πτυχή της προσβάσιμης στέγασης, που ονομάζεται "επισκεψιμότητα", περιλαμβάνει τη δυνατότητα στους ανθρώπους σε αναπηρικά αμαξίδια να έχουν πρόσβαση σε σπίτια συγγενών ή φίλων που μπορεί να έχουν ή να μην έχουν περιορισμούς κινητικότητας. Η "επισκεψιμότητα" επιτάσσει χαρακτηριστικά όπως τουλάχιστον μια είσοδο χωρίς σκαλιά, μεγάλες πόρτες και τουαλέτες στο ισόγειο (91, 92). Μια σειρά χρηματοδοτικών μηχανισμών μπορούν να χρησιμοποιηθούν για την αύξηση των προσβάσιμων κατοικιών. Αυτοί περιλαμβάνουν φορολογικά κίνητρα και χαμηλότοκα δάνεια σε ιδιώτες κατασκευαστές στεγαστικών προγραμμάτων για να τους ενθαρρύνει να χτίσουν προσβάσιμες κατοικίες όπως προβλέπεται από το Fair Housing Act των ΗΠΑ του 1988 και την σχετική νομοθεσία. Επίσης, στις ΗΠΑ, ο νόμος περί στέγασης του 1959 προβλέπει επιχορηγήσεις κεφαλαίων σε μη κερδοσκοπικούς οργανισμούς για να καλύψουν τα έξοδα ανοικοδόμησης,
Κεφάλαιο 7
Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης.
Πλαίσιο 7.1. Σρι Λάνκα: ανάκαμψη μετά τον σεισμό στον Ινδικό Ωκεανό και το τσουνάμι του 2004 Το τσουνάμι στον Ινδικό Ωκεανό το 2004 κόστισε δεκάδες χιλιάδες ζωές στη Σρι Λάνκα και κατέστρεψε αμέτρητα κτίρια. Ωστόσο, η ανοικοδόμηση έδωσε την ευκαιρία να αναπτυχθούν πιο προσβάσιμοι χώροι. Άτομα με αναπηρία και ηλικιωμένοι που ζουν σε αγροτικές περιοχές της Σρι Λάνκα συχνά δυσκολεύονται να κινηθούν στα σπίτια τους, πόσο μάλλον στις γειτονιές τους. Οι άνθρωποι με κινητικές δυσκολίες συχνά στηρίζονται στη βοήθεια των άλλων, με αποτέλεσμα να επηρεάζεται η ανεξαρτησία των άλλων μελών της οικογένειας περιλαμβανομένης της δυνατότητας τους να αναλάβουν εργασία πλήρους απασχόλησης. Δεν υπάρχουν αξιόπιστα στατιστικά στοιχεία στη Σρι Λάνκα σχετικά με την αναπηρία, αλλά δεκαετίες εμφυλίου πολέμου έχουν αυξήσει τον αριθμό των ανθρώπων που βιώνουν την αναπηρία. Μετά το τσουνάμι, μια τοπική οργάνωση για την αναπηρία, σε συνεργασία με διεθνή οργανισμό, ανέλαβε την ανοικοδόμηση ενός κατεστραμμένου χωριού σε πρότυπο προσβάσιμου χωριού, προσλαμβάνοντας ένα αρχιτέκτονα και έναν εργοθεραπευτή ώστε να παρέχουν συμβουλές σε σχέση με την προσβασιμότητα. Εθνικά πρότυπα ή κατευθυντήριες γραμμές σχετικά με την προσβασιμότητα δεν ήταν διαθέσιμα. Οι ευρωπαϊκές κατευθυντήριες γραμμές που χρησιμοποιήθηκαν, αποδείχθηκαν προβληματικές εξαιτίας της αστικής και "ευρωπαϊκής" τους βάσης. Με περιορισμένους οικονομικούς πόρους, 55 απλά αλλά προσβάσιμα σπίτια και ένας προσβάσιμος χώρος εστίασης ολοκληρώθηκαν σύμφωνα με τις προδιαγραφές που ορίζονταν από την κυβέρνηση. Προσβάσεις με ράμπα ή πρόσβαση σε σκαλιά με ράγες παρασχέθηκαν, όπου απαιτείτο. Στο εσωτερικό, όλα τα σπίτια είχαν επίπεδη πρόσβαση, πόρτες με καθορισμένο ελάχιστο πλάτος και ελάχιστο χώρο για στροφή του αμαξιδίου σε όλα τα δωμάτια. Στο πλάι του κάθε σπιτιού προστέθηκε ένας χώρος που συνδύαζε τουαλέτα και μπάνιο με επίπεδη πρόσβαση. Όπου απαιτείτο, προστέθηκαν χειρολαβές καθώς και ένα ανυψωτικό λεκάνης με διπλή χρήση και ως καρέκλα ντους. Διακόπτες, λαβές και κρουνοί τοποθετήθηκαν εντός συγκεκριμένων ορίων προκειμένου να είναι προσεγγίσιμα. Πριν από την κατασκευή, οι ηλικιωμένοι και οι κάτοικοι του χωριού με αναπηρία, καθώς και οι φροντιστές τους ήταν απρόθυμοι να αποδεχθούν το νέο στυλ στέγασης, ειδικά την πρόσθετη τουαλέτα, αλλά στη συνέχεια είδαν με ευχαρίστηση τις βελτιωμένες εγκαταστάσεις. Άτομα χωρίς περιορισμούς κινητικότητας συχνά μετατρέψαν το πρόσθετο μπάνιο σε ένα άλλο υπνοδωμάτιο και κατασκεύασαν έναν εξωτερικό εναλλακτικό χώρο μπάνιου. Ο χώρος συνεστιάσεων της κοινότητας, με ράμπες και προσβάσιμες τουαλέτες, έδωσε τη δυνατότητα στους ανθρώπους με αναπηρία, στους ηλικιωμένους με μικρότερη κινητικότητα και τους φροντιστές οι οποίοι δεν θα μπορούσαν κανονικά να συμμετέχουν σε κοινωνικές δραστηριότητες να συμμετέχουν σε εκδηλώσεις της κοινότητας. Αντλήθηκαν σημαντικά διδάγματα, και συγκεκριμένα: ■ Ενας αναλυτικός σχεδιασμός πρέπει να λαμβάνει σοβαρά υπόψη τις πολιτιστικές και οικονομικές συνθήκες. ■ Οι κατευθυντήριες οδηγίες που αναπτύχθηκαν για χώρες υψηλού εισοδήματος μπορεί να μην είναι κατάλληλες για χώρες χαμηλού εισοδήματος, ιδιαίτερα στις αγροτικές περιοχές. Οι λύσεις που θα βρεθούν είναι καλύτερα να ταιριάζουν στις τοπικές συνθήκες. ■ Η στενή επίβλεψη ήταν απαραίτητη στο στάδιο της κατασκευής, καθώς οι οικοδόμοι δεν ήταν εξοικειωμένοι με τα βασικά στοιχεία του σχεδιασμού.
αποκατάστασης ή αγοράς ακινήτων. Η κρατική Νορβηγική Στεγαστική Τράπεζα, στο πλαίσιο του προγράμματος Lifecycle Housing, ομοίως προσφέρει δάνεια με χαμηλό κόστος για τους κατασκευαστές για να τους ενθαρρύνει να χτίσουν προσβάσιμες κατοικίες. Μεγαλύτερη αποδοχή από το Lifecycle Housing επετεύχθη με τη σύνδεση της προσβασιμότητας με την ποιότητα του σχεδιασμού και την ενθάρρυνση της συνεργασίας μεταξύ αρχιτεκτόνων, ομάδων ατόμων με αναπηρία και κατασκευαστών (80, 89). Μέχρι το Μάιο του 2004, το πρόγραμμα στο Όσλο παρήγαγε 260.873 οικιστικές μονάδες, το 85% εκ των οποίων είχαν καταληφθεί από τους ηλικιωμένους και το 15% από νεό-
τερα άτομα με αναπηρία (93). Όταν αργότερα ανακαλύφθηκε ότι κοινωνικές ομάδες που ενδιαφέρονταν να απευθυνθούν σε κατασκευαστές, δεν είχαν πρόσβαση σε επαρκή κεφάλαια, το Disability Opportunity Fund ιδρύθηκε στις ΗΠΑ το 2007, για να συμπληρώσει τα κίνητρα στη νομοθεσία (88). Άλλοι μηχανισμοί - όπως η σαφής σήμανση των κατοικιών ως "προσβάσιμες" ή η παροχή βραβείων σχεδιασμού - μπορεί να ενθαρρύνει την κατασκευή προσβάσιμης στέγασης. Η σήμανση των κατοικιών ως "προσβάσιμες" μπορεί να βοηθήσει στην αντιμετώπιση του στίγματος που συνδέεται με τη διαβίωση σε "ειδικό" σπίτι και μπορεί να τονώσει τη ζήτηση των 165
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
καταναλωτών. Σε ένα κοινωνικό σχέδιο στέγασης στην Βρετανική Κολούμπια, στον Καναδά για παράδειγμα, η έννοια "ευέλικτη στέγαση" χρησιμοποιήθηκε για σχεδιασμό, και αύξηση της ζήτησης προσβάσιμων σε αναπηρικά αμαξίδια κατοικιών στην κοινότητα Seabert Island (94). Ο σχεδιασμός της ευέλικτης στέγασης επιτρέπει στους ενοίκους να τροποποιούν εύκολα την επικοινωνία μεταξύ δωματίων και το μέγεθος των δωματίων με σκοπό την αύξηση της προσβασιμότητας. Στην Αυστραλία και το Ηνωμένο Βασίλειο έχουν θεσμοθετηθεί εθνικά βραβεία για σχεδιαστές και αρχιτέκτονες, καθώς και βραβεία κοινωνικής υπηρεσίας για προγράμματα προσβάσιμης στέγασης με σκοπό να ενθαρρυνθεί η κατασκευή προσβάσιμων κατοικιών (89). Η βελτίωση της προσβάσιμης κοινωνικής στέγασης είναι σημαντική για τα άτομα με κάκωση νωτιαίου μυελού που έχουν περιορισμένες οικονομικές δυνατότητες. Οι σύνθετες απαιτήσεις χρηματοδότησης και συντονισμού για την παροχή υψηλής ποιότητας κοινωνικής ή επιδοτούμενης στέγασης αποτελούν προκλήσεις, ακόμη και στα πλουσιότερα των κρατών (26, 27). Πολλές καινοτόμες προσεγγίσεις για την δημιουργία προσβάσιμης κοινωνικής στέγασης έχουν αναπτυχθεί ανά την Ευρώπη κατά τα τελευταία 20 έτη (95-97), οι οποίες συχνά δρομολογούνται με αφορμή την γήρανση του πληθυσμού (81). Αυτά περιλαμβάνουν: ■ Στη Δανία, μια συνεταιριστική στεγαστική εταιρεία κατασκεύασε συγκροτήματα διαμερισμάτων που συνδέονται με κοινούς χώρους για άτομα με κινητικές δυσκολίες. Η κυβέρνηση της Δανίας χρηματοδότησε το κόστος κατασκευής, ενώ ιδιωτική χρηματοδότηση κάλυψε τις πρόσθετες διευκολύνσεις για τα άτομα με αναπηρία και οι τοπικές αρχές καλύπτουν τα έξοδα περίθαλψης. Η "στέγαση ειδικών αναγκών" (για άτομα με αναπηρίες, για ηλικιωμένους και για πολύτεκνες οικογένειες) αποτελεί το 50% των νέων κοινωνικών κατοικιών στη Δανία (98). ■ Στη Σουηδία, στη Στοκχόλμη κτίστηκε με ένα στεγαστικό πρόγραμμα μια πρώην βιομηχανική έκταση που προσφέρθηκε από μια ιδιωτική εταιρεία. Σε συνεργασία με σχεδιαστές της πόλης κατασκευάστηκαν προσβάσιμα συνεταιριστικά συγκροτήματα κατοικιών με ένα κοινωνικό κέντρο, 166
ένα παιδικό σταθμό, ένα κέντρο νεότητας και ένα ιατρικό κέντρο (96). ■ Στην Ολλανδία, από το 1997 όλα τα νέα σπίτια στον ιδιωτικό και δημόσιο τομέα στέγασης απαιτήθηκε να σχεδιαστούν σύμφωνα με πρότυπα προσβασιμότητας που καθορίζονται από τον εθνικό στεγαστικό κώδικα, ο οποίος καλύπτει θέματα όπως οι συντελεστές δόμησης, οι απαιτούμενοι χώροι για αναπηρικά αμαξίδια, το πλάτος των θυρών, τα ύψη των ηλεκτρικών πριζών και οι επιφάνειες εργασίας. Το χάσμα μεταξύ της καταναλωτικής ζήτησης και της κυβερνητικής προσφοράς μπορεί να μειωθεί με την παροχή πληροφοριών. Στο Ηνωμένο Βασίλειο, το Μητρώο Προσβάσιμης Στέγασης του Λονδίνου έχει ως στόχο να ενθαρρύνει τους ιδιοκτήτες κοινωνικής στέγης να κάνουν προσαρμογές προσβασιμότητας (91). Το μητρώο δεν λειτουργεί μόνο στη μετάδοση πληροφοριών σε ανθρώπους που χρειάζονται προσβάσιμη στέγαση, αλλά θέτει επίσης τα κριτήρια της προσβασιμότητας, κατηγοριοποιώντας τις διαθέσιμες κοινωνικές κατοικίες, σύμφωνα με τα λεπτομερή πρότυπα προσβασιμότητας για αναπηρικό αμαξίδιο σε όλους τους χώρους της κατοικίας (99). Κατάλογοι προσβάσιμων κατοικιών έχουν επίσης αναπτυχθεί από οργανισμούς της τοπικής αυτοδιοίκησης και των ατόμων με ειδικές ανάγκες σε ορισμένα τμήματα του Καναδά και της Αυστραλίας (100). Παρόμοιες προσεγγίσεις έχουν αναπτυχθεί με επιτυχία στη Ρουάντα, ως μέρος ενός εκτεταμένου προγράμματος για την παροχή προσβάσιμων κατοικιών για βετεράνους και αμάχους πολίτες που έμειναν ανάπηροι ως αποτέλεσμα της γενοκτονίας του 1994 (101). Είναι σημαντικό οι λύσεις στέγασης να μην διακρίνουν τα άτομα με αναπηρία. Έτσι ο γενικός σχεδιασμός που περιλαμβάνει προσβάσιμες κατοικίες στα πλαίσια μικτών οικιστικών ρυθμίσεων είναι η προτιμώμενη λύση.
Μεταφορικά μέσα Τα εύχρηστα δημόσια μέσα μαζικής μεταφοράς αποτελούν ένα από τους πιο σημαντικούς παράγοντες διευκόλυνσης για τα άτομα με ειδικές ανάγκες (102). Η πολιτική σε θέματα μεταφορών θα πρέπει να αποτελεί
Κεφάλαιο 7
Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης.
μέρος της εθνικής στρατηγικής για την αναπηρία, ενώ η πρόσβαση θα πρέπει να είναι μέρος οποιασδήποτε εθνικής στρατηγικής σε θέματα μεταφορών. Η προσβασιμότητα στα μέσα μεταφοράς μπορεί να αντιμετωπιστεί καλύτερα με μια ολοκληρωμένη πολιτική που θα ρυθμίζεται από ένα υπεύθυνο οργανισμό με τη συμμετοχή ατόμων με αναπηρία. Είναι πιο αποτελεσματική και λιγότερο δαπανηρή η εξ αρχής κατασκευή προσβάσιμων μέσα μεταφοράς, παρά η αναβάθμιση των παλαιών (8). Οι προκλήσεις δεν είναι απλώς τεχνικές και οικονομικές αλλά συχνά είναι επίσης ψυχολογικές – όπως ο φόβος για την ασφάλεια (34, 36, 62, 103). Παρακάτω περιγράφονται οι στρατηγικές που μπορούν να χρησιμοποιηθούν για την προώθηση της προσβασιμότητας σε ένα ευρύ φάσμα των επιλογών μεταφοράς.
Συστήματα λεωφορείων σταθερής τροχιάς, τραμ, μετρό και σιδηρόδρομοι Η ανακαίνιση του υφιστάμενου δημόσιου συστήματος παρουσιάζει τεχνικά και οικονομικά προβλήματα (104), όπως η εξασφάλιση απαιτούμενου χώρου για αναπηρικά αμαξίδια, η υπέρβαση της διαφοράς ύψους μεταξύ του δρόμου και του επιπέδου του οχήματος και ο περιορισμός του κενού διαστήματος μεταξύ του οχήματος και της πλατφόρμας (105, 106). Λεωφορεία που χαμηλώνουν, αυτόματα αναβατόρια, ανελκυστήρες και ράμπες μπορούν να διαμορφώσουν προσβασιμότητα. Τα μετρό στις μεγάλες πόλεις του κόσμου γίνονται όλο και πιο προσβάσιμα (107), καθώς και τα συστήματα ταχείας μεταφοράς σε πόλεις όπως το Κάλγκαρι του Καναδά, το Πεκίνο στην Κίνα, και το Νταρ ες Σαλάμ, στην Ενωμένη Δημοκρατία της Τανζανίας, έχουν εφαρμόσει τις αρχές του παγκοσμίου σχεδιασμού (104, 108-110). Ο στόχος πρέπει να είναι η εφαρμογή λύσεων που θα αντιμετωπίζουν το ευρύτερο δυνατό φάσμα των προβλημάτων μετακίνησης, αντί να στηρίζονται σε διορθωτικά μέτρα της στιγμής, όπως αναδιπλούμενες ράμπες ή φορητοί ανελκυστήρες που εξαρτώνται από τη διαθεσιμότητα του προσωπικού (111).
οδηγήσει σε μια κίνηση για να βρεθούν προσεγγίσεις "προσφοράς-ζήτησης", όπως είναι οι παρα-μεταφορικές υπηρεσίες που βρίσκουμε σε περιοχές υψηλού η χαμηλού εισοδήματος (113, 114). Ωστόσο, τέτοιες ειδικές υπηρεσίες μεταφορών (ΕΥΜ) μπορεί να εκληφθούν ως "ειδική μεταχείριση" για λίγους, ή ως υπερβολικά δαπανηρές και επικίνδυνες (35, 36). Για την αντιμετώπιση αυτών των αντιλήψεων, το Σουηδικό πρόγραμμα "Brukslinjen" ξεκίνησε το 2001, μια προσπάθεια να συνεργαστούν οι αγροτικές με τις αστικές κοινότητες για να ενσωματώσουν πλήρως το υφιστάμενο σύστημα δημόσιων μεταφορών περιλαμβανομένων των σχολικών λεωφορείων και των άλλων κανονικών μεταφορικών μέσων - με τις ευέλικτες διαδρομές ΕΥΜ . Το σχέδιο Brukslinjen έχει επεκταθεί σε όλη τη χώρα (35, 37). Η Σουηδία στηρίζεται σε μεγάλο βαθμό στα ταξί για ΕΥΜ (35). Μια πιο τεχνοκρατική λύση υλοποιήθηκε με τα RegioTaxi ΚΑΝ στην Ολλανδία και την πρωτοβουλία FLIPPER στην Μπολόνια της Ιταλίας. Και οι δύο χρησιμοποιούν ένα βασισμένο στην τηλεμετρία σύστημα "προσφοράς-ζήτησης", στο οποίο τα κέντρα εξυπηρέτησης επιβατών χρησιμοποιούν υπολογιστές για κρατήσεις και συστήματα αυτόματου εντοπισμού οχημάτων. Οι πληροφορίες αυτές στη συνέχεια μεταφέρονται στο λογισμικό σύστημα διαδρομών που συνδέει το παρα-μεταφορικό σύστημα με το δημόσιο σύστημα, τα ιδιωτικά ταξί, και τις άλλες υπηρεσίες. Χρησιμοποιώντας ένα μόνο εισιτήριο, το άτομο μπορεί να επιλέξει μια διαδρομή και στη συνέχεια να κατευθυνθεί σε μια σειρά από επικοινωνούντες προορισμούς (115).
Ειδικές υπηρεσίες μεταφορών Η ανάγκη για μέσα μεταφοράς που να είναι απόλυτα προσβάσιμα στα αναπηρικά αμαξίδια (33, 112) έχει
Ταξί, μικρά λεωφορεία, τρίκυκλα ποδήλατα ταξί (cycle rickshaws) Ορισμένες μεγάλες πόλεις ευνοούν τα προσβάσιμα ιδιωτικά ταξί. Ο στόλος των ταξί στο Λονδίνο, του Ηνωμένου Βασίλειου, για παράδειγμα, είναι κατά 75% προσβάσιμος (περίπου 24.000 οχήματα) (35). Παρά το γεγονός ότι σε συνθήκες χαμηλού εισοδήματος, το κόστος των προσβάσιμων ταξί, καθώς και η υποδομή για ένα συντονισμένο δίκτυο, μπορεί να είναι απρόσιτα, επιλογές χαμηλότερου κόστους, όπως τρίκυκλα ποδήλατα (cycle rickshaws, pedicabs), μικρά λεωφορεία και pedicabs μπορεί να αποτελέσουν οικονομικές λύσεις για άτομα με ειδικές ανάγκες (62). Υπό ορισμένες συν167
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
θήκες, και για άτομα με κάκωση νωτιαίου μυελού που είναι σε θέση να μετακινηθούν χωρίς την καρέκλα τους, αυτές οι μορφές μεταφορών μπορεί να είναι μια καλή επιλογή. Τα μικρά λεωφορεία-ταξί στη Νότια Αφρική, τα chapa 100s στη Μοζαμβίκη, και τα micros στο Μεξικό όλα παρέχουν καλή "curb-to-curb" μετακίνηση λόγω του μικρότερου μεγέθους τους και της δυνατότητας να βρίσκονται παντού (62).
Συνεργασία δημόσιου και ιδιωτικού τομέα Πολλές λύσεις σε θέματα μεταφορών βασίζονται στην συνεργασία δημόσιου και ιδιωτικού τομέα. Όταν ο δημόσιος τομέας αντιμετωπίζει περικοπές και τα δημόσια μέσα μαζικής μεταφοράς αποδιοργανώνονται, τότε το χάσμα το καλύπτουν τα ιδιωτικά ταξί, τα μικρά λεωφορεία ή άλλες οδικές υπηρεσίες που ανταγωνίζονται για ένα μερίδιο της αγοράς. Μια μελέτη σε θέματα μεταφορών στη Γεωργία, τη Γκάνα και το Καζακστάν έδειξε ότι όταν οι ιδιωτικές υπηρεσίες εισέρχονται στην αγορά των ΜΜΜ τείνουν να εκτοπίσουν το δημόσιο σύστημα και μόλις εδραιωθούν, αντιστέκονται στους κανόνες ή στην τήρηση των κανόνων προσβασιμότητας (116). Η αυξημένη κινητοποίηση των καταναλωτών σε συνεργασία με την κυβέρνηση υπήρξε επιτυχής στην αύξηση των προσβάσιμων ΜΜΜ στα ολοκληρωμένα συστήματα ταχείας μετακίνησης (Integrated Rapid Transit systems) στο Κέιπ Τάουν και το Γιοχάνεσμπουργκ, στην Νότια Αφρική (111), καθώς και στο πρόγραμμα ταχείας μετακίνησης του Dar es Salaam της Ενωμένης Δημοκρατίας της Τανζανίας (Dar es Salaam Rapid Transit Project), που ενσωματώνει πλήρως τα δημόσια δίκτυα μεταφορών με ιδιωτικούς παρακυκλοφοριακούς φορείς (113). Ήδη από τη δεκαετία του 1970, η Βραζιλία ήταν πρωτοπόρος όσον αφορά στην υλοποίηση προγραμμάτων προτεραιότητας για τα λεωφορεία υψηλής ροής, αλλά οικονομικοί περιορισμοί δυσχεραίνουν την προσπάθεια των πόλεων να χρηματοδοτήσουν τις δημόσιες υποδομές. Αντί της υποβάθμισης των προσβάσιμων υπηρεσιών, ωστόσο, και παρακινούμενες από τις διαμαρτυρίες των ομάδων που εκπροσωπούν τους ηλικιωμένους και τα άτομα με ειδικές ανάγκες, οι πόλεις της Βραζιλίας έχουν επιλέξει για την συνεργασία δημόσιου-ιδιωτικού τομέα τα λεωφορεία ταχείας διέλευσης με πλήρη προσβασιμότητα (117). 168
Εκπαίδευση Η επιτυχία οποιασδήποτε από αυτές τις στρατηγικές εξαρτάται από τη συνεργασία ενός καταρτισμένου και καλά ενημερωμένου προσωπικού μεταφοράς. Τα συστήματα ασφαλείας στα λεωφορεία έχουν μικρή χρησιμότητα εάν ο χειριστής του λεωφορείου δεν έχει εκπαιδευτεί στη χρήση τους. Οι οδηγοί ταξί μπορεί να διαθέτουν προσβάσιμα οχήματα, αλλά να εξακολουθούν να αποφεύγουν ανθρώπους σε αναπηρικά αμαξίδια, εξαιτίας της σχετικής ταλαιπωρίας. Επιπλέον διαχειριστές και σχεδιαστές πολιτικών μπορεί να αδυνατούν να κατανοήσουν τη σημασία της προσβασιμότητας ή την ανάγκη για καλά τεκμηριωμένες κατευθυντήριες γραμμές για λύσεις πρόσβασης χαμηλού κόστους (108). Ιδιωτικά μέσα μεταφοράς Για πολλούς ανθρώπους στις χώρες με υψηλά εισοδήματα, ιδιόκτητα και κατάλληλα διαμορφωμένα οχήματα εξασφαλίζουν ανεξάρτητη διαβίωση, κοινωνική συμμετοχή και μεγαλύτερη ικανοποίηση από τη ζωή (118-120). Το άρθρο 20 της CRPD για την ατομική κινητικότητα παρέχει οδηγίες για πρόσβαση σε βοηθήματα και συσκευές με σκοπό την προώθηση της ανεξαρτησίας, και ως εκ τούτου απαιτείται καταρτισμένο και εξειδικευμένο προσωπικό. Για εκείνους που μπορούν να μεταφερθούν σε αυτοκίνητο, και έχουν αναπηρικό αμαξίδιο που μπορεί να φορτωθεί, το κόστος των τροποποιημένων συστημάτων οδήγησης για ένα όχημα με αυτόματο κιβώτιο ταχυτήτων είναι σχετικά μέτριο. Σε χώρες όπως η Κίνα, η Μαλαισία, η Ταϊλάνδη και το Βιετνάμ, οι τροποποιημένες μοτοσικλέτες είναι μια χαμηλότερου κόστους δημοφιλής λύση για ορισμένα άτομα με παραπληγία (121). Για όσους δεν μπορούν να μεταφερθούν σε αυτοκίνητο, οχήματα προσβάσιμα σε αναπηρικά αμαξίδια έχουν μεγαλύτερο κόστος, ιδιαίτερα για τετραπληγικούς (122), διότι θα απαιτηθεί από κάποιο φίλο ή βοηθό να οδηγήσει (30). Παρ’ όλα αυτά, σημαντικές καινοτόμες πολιτικές έχουν δημιουργηθεί σε διάφορες χώρες που προσφέρουν πιθανές λύσεις όπως επιδοτήσεις και επιχορηγήσεις (123-126). Στη Φινλανδία, για παράδειγμα, η αγορά τροποποιημένου ιδιωτικού οχήματος υποστηρίζεται από μειώσεις στο φόρο.
Κεφάλαιο 7
Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης.
Δημόσια κτίρια Η επιτυχία στην επίτευξη προσβασιμότητας δεν μπορεί να περιορίζεται σε ένα μόνο παράγοντα: εφαρμοστέοι νόμοι και ορθές πολιτικές πρέπει να συνδυάζονται με ισχυρή εποπτεία, συνεργασία μεταξύ των διαφόρων φορέων καθώς και αφοσίωση στη σταδιακή υλοποίηση των κατάλληλων προτύπων προσβασιμότητας. Τα διαρθρωτικά και τα πολιτικά μέτρα όπως η νομοθεσία, οι κανονισμοί, τα οικοδομικά πρότυπα και οι πολιτικές είναι αναγκαίο να αντιμετωπίσουν την πρόκληση της επίτευξης προσβασιμότητας στα δημόσια κτίρια, τους δημόσιους χώρους και τις ιδιωτικές εγκαταστάσεις, όπως εμπορικά κέντρα, καταστήματα, εστιατόρια και ξενοδοχεία. Ωστόσο, απαιτείται και πολιτική βούληση και θεσμική στήριξη για να συνδυαστούν αυτοί οι παράγοντες. Το πιο σημαντικό, τα μέτρα αυτά πρέπει να είναι εφαρμοστέα. Έρευνες δείχνουν ότι, ακόμη και όταν υπάρχουν νόμοι και πολιτικές που διέπουν την προσβασιμότητα, αν η εφαρμογή τους είναι σε εθελοντική βάση, η συμμόρφωση είναι περιορισμένη (19-21). Σε χώρες όπως η Αυστραλία, ο Καναδάς, η Γερμανία, η Ινδία, η Νέα Ζηλανδία, το Ηνωμένο Βασίλειο και οι ΗΠΑ, όπου οι απαιτήσεις προσβασιμότητας συνδέονται άμεσα με τη νομοθεσία κατά των διακρίσεων με αξιόποινες διατάξεις, μια πλήρως αποδεδειγμένη καταγγελία έλλειψης προσβασιμότητας μπορεί να οδηγήσει στην επιβολή προστίμων ή σε δικαστικές καταδίκες. Ένας νεαρός χρήστης αναπηρικού αμαξιδίου στο Ηνωμένο Βασίλειο, το 2007 κέρδισε μία σημαντική αποζημίωση από μία μεγάλη τράπεζα, επειδή οι εγκαταστάσεις της τράπεζας δεν ήταν προσβάσιμες (127). Αν και τέτοιες νίκες είναι σημαντικές, η χρησιμοποίηση της νομοθεσίας κατά των διακρίσεων έχει μειονεκτήματα. Η δικαστική διαδικασία είναι δαπανηρή και, ακόμα και όταν είναι επιτυχής, οι νίκες δεν μεταφράζονται πάντα σε αλλαγές του συστήματος. Αν ο νόμος κατά των διακρίσεων αναγνωρίζει την "υπέρμετρη ταλαιπωρία" ως εύλογο επιχείρημα για συμβιβασμούς, η δυνατότητα πρόσβασης μετατρέπεται από ζήτημα ανθρωπίνων δικαιωμάτων σε ζήτημα κόστουςαποτελεσματικότητας, το οποίο είναι λιγότερο σαφές και δύσκολο να υποστηριχθεί. Κάθε πιεστική στρατηγική καταναγκασμού μπορεί να οδηγήσει σε στρεβλά αποτελέσματα, όπως η μερική
συμμόρφωση σε ευκολότερες και πιο εμφανείς ρυθμίσεις όπως για παράδειγμα η ράμπα στην κεντρική είσοδο του εμπορικού κέντρου, χωρίς τίποτα άλλο να αλλάξει, αφήνοντας τον χρήστη αναπηρικού αμαξιδίου αβοήθητο στο εσωτερικό του κτιρίου (128). Όλες οι βελτιώσεις πρόσβασης είναι φυσικά ευπρόσδεκτες, αλλά δαπανηρές, και υπερβολικές διευκολύνσεις μπορεί να εξαντλήσουν το διατιθέμενο προϋπολογισμό χωρίς να πετύχουν ικανοποιητική προσβασιμότητα. Οι λύσεις σε θέματα προσβασιμότητας θα πρέπει επίσης να είναι πρακτικές, φιλικές προς το χρήστη με σεβασμό στην προσωπικότητα του. Μια μελέτη διαπίστωσε ότι οι καθορισμένοι ως "προσβάσιμοι ανελκυστήρες" ήταν όλοι ανελκυστήρες φορτίων - μερικοί από τους οποίους είχαν σχεδιαστεί για να μεταφέρουν τα σκουπίδια - και βρίσκονταν σε δυσπρόσιτα μέρη του κτιρίου (49). Μια πιο αποτελεσματική προσέγγιση, αν και σε περιορισμένη έκταση, είναι ο νόμος της Γερμανίας σχετικά με τις άδειες για εστιατόρια, καφετέριες και μπαρ (Germany’s Act on Licenses for Restaurants, Cafes and Bars) που κάνει την προσβασιμότητα προϋπόθεση για τη χορήγηση άδειας λειτουργίας. Υπό το φως των δυσκολιών με την εφαρμογή των κανόνων, ορισμένες χώρες έχουν δοκιμάσει την παροχή κινήτρων: ■ Η εκστρατεία του προγράμματος "Βαρσοβία χωρίς εμπόδια" ("Warsaw without Barriers") στην Πολωνία προσφέρει βραβεία για τις πλέον καινοτόμες και αποτελεσματικές λύσεις προσβασιμότητας στο κέντρο της πόλης. ■ Το πρόγραμμα "Χάρτης Προσβασιμότητας της Σοφίας" ("Map of Accessible Sofia") στη Βουλγαρία προβάλλει και διαφημίζει προσβάσιμα καταστήματα και εγκαταστάσεις. ■ Ένα σημαντικό μέρος της Εθνικής Στρατηγικής για την Αναπηρία της Ιρλανδίας ("Ireland’s National Disability Strategy") όσον αφορά στη δημόσια προσβασιμότητα είναι να πείσει τους επενδυτές και τους κατασκευαστές ότι τα προσβάσιμα κτίρια θα τους παράσχουν μια καλή απόδοση της επένδυσής τους μέσω της βελτίωσης των τιμών της αγοράς, της πιθανής διεύρυνσης της χρήσης τους, της προώθησης μιας καλύτερης εικόνας, καθώς και της βελτίωσης της ευκολίας χρήσης και ασφάλειας (56) (βλέπε Πλαίσιο 7.2). ■ Στην Καναδική επαρχία του Οντάριο, ο Σύλλογος 169
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
των Διευθυντών του δήμου, ανταποκρινόμενος στις διατάξεις της Πράξης για την Προσβασιμότητα των κατοίκων του Οντάριο με Αναπηρία του 2005, οργάνωσε μια ιστοσελίδα με τίτλο "δημοτική εργαλειοθήκη προσβασιμότητας" που παρουσίαζε καινοτόμους τρόπους συμμόρφωσης με τις απαιτήσεις της Πράξης. Η ιστοσελίδα καλλιέργησε ένα αίσθημα ανταγωνισμού μεταξύ των δήμων για επινόηση εφικτών τρόπων δημιουργίας προσβάσιμων κτιρίων και δημόσιων χώρων (129). Ένας βασικός δείκτης επιτυχίας για οποιοδήποτε Πλαίσιο 7.2. Έλεγχος συντήρησης προσβασιμότητας
πρόγραμμα δημόσιας προσβασιμότητας είναι ο βαθμός στον οποίο είναι καθολική και ολοκληρωμένη. Ένα πρόγραμμα προσβασιμότητας για δημόσια κτίρια και χώρους, καθώς και για ιδιωτικά κτίρια που είναι ανοιχτά για το κοινό θα πρέπει να προσπαθεί να επιτύχει την πλήρη προσβασιμότητα με προγραμματισμένα βήματα ώστε να αποφευχθεί η παγίδα του "όλα-ή-τίποτα" κατά την οποία σημαντικές αρχικές βελτιώσεις αναβάλλονται επειδή η πλήρης προσβασιμότητα δεν είναι άμεσα εφικτή. Όλες οι συνισταμένες των στρατηγικών και τεχνι-
Εξωτερικά Βεβαιωθείτε ότι: ■ έχουν καθοριστεί χώροι στάθμευσης που προορίζονται για τη χρήση των οδηγών με αναπηρία, ■ ράμπες και διαδρομές κυκλοφορίας είναι απαλλαγμένες από σταθμευμένα ποδήλατα και άλλα εμπόδια, ■ διαδρομές κυκλοφορίας και διαφυγής από τα κτίρια σε ασφαλείς χώρους είναι καλά φωτισμένες και απαλλαγμένες από εμπόδια, ■ περιοχές που επισκευάζονται ή συντηρούνται πρέπει να προστατεύονται επαρκώς και να παρέχονται εναλλακτικές διαδρομές που φέρουν σαφή σήμανση, όταν χρειάζεται ■ οι επιφάνειες των διαδρομών είναι καλά διατηρημένες, καθαρές, απαλλαγμένες από χώμα, χαλίκι, λάσπη, πάγο, χιόνι και βρύα, ■ η μπαταρία της πλατφόρμας των ανελκυστήρων είναι μόνιμα φορτισμένη, ■ τα βοηθήματα εκκένωσης είναι στη θέση τους. Είσοδοι Βεβαιωθείτε ότι: ■ δεν υπάρχουν εμπόδια στον χώρο που απαιτείται για στροφές στην κορυφή των ραμπών, ■ δεν υπάρχουν εμπόδια σε χώρους προσέγγισης σε κουδούνια, γραμματοκιβώτια και λαβές θυρών, ■ οι πόρτες ανοίγουν εύκολα και οι μηχανισμοί κλεισίματος είναι ρυθμισμένοι στην ελάχιστη δύναμη για να κλείσει η πόρτα ■ δεν υπάρχουν εμπόδια, μόνιμα ή προσωρινά σε χωλ εισόδου. Οριζόντια κυκλοφορία εντός του κτιρίου Βεβαιωθείτε ότι: ■ τα χαλάκια της πόρτας δεν προεξέχουν και μαζί με τα χαλιά είναι καλά στερεωμένα ώστε να μην υπάρχει κίνδυνος ολίσθησης, ■ εξασφαλίζεται μια αντίσταση ολίσθησης στα τελειώματα των δαπέδων, οι διαρροές καθαρίζονται αμέσως και χρησιμοποιούνται τα κατάλληλα καθαριστικά και γυαλιστικά, ■ αντικαθίστανται τα φθαρμένα τελειώματα δαπέδων, ■ ο τεχνητός φωτισμός είναι σε ικανοποιητικά επίπεδα, ■ οι πόρτες ανοίγουν εύκολα, και ρυθμίζονται ώστε να απαιτείται η ελάχιστη δύναμη για να κλείσουν, ■ οι πόρτες παραμένουν κλειστές όταν δεν χρησιμοποιούνται, ■ οι χώροι για τα αναπηρικά αμαξίδια σε χώρους αναμονής αλλά και αλλού διατηρούνται χωρίς εμπόδια ■ οι διαδρομές κυκλοφορίας είναι ελεύθερες από εμπόδια (π.χ. εργαλειοθήκες, κουτιά αρχείων, μηχανήματα αυτόματης πώλησης, φωτοτυπικά) ■ τα καταφύγια διατηρούνται χωρίς εμπόδια, ■ υπάρχει επαρκής ελεύθερος χώρος σε όλο το κτίριο, χωρίς ίχνη καλωδίων στο δάπεδο ή σε ύψος κάτω από 220 εκατοστά, ■ οι είσοδοι και έξοδοι σε όλους τους ανελκυστήρες και τις σκάλες είναι απαλλαγμένοι από εμπόδια. Πηγή (56)
170
Κεφάλαιο 7
Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης.
κών οδηγιών, οι επαγγελματικές γνώσεις και εμπειρίες, το νομοθετικό και πολιτικό πλαίσιο, η ευαισθητοποίηση του κοινού, η πολιτική βούληση και οι οικονομικοί πόροι - πρέπει να συγκεντρωθούν σε ένα ενιαίο πρόγραμμα προσβασιμότητας με προκαθορισμένη υπηρεσία. Η στρατηγική θα πρέπει να προβλέπει τη χρηματοδότηση της προσβασιμότητας και πρέπει να διασφαλίζει ότι τα ιδρύματα επαγγελματικής κατάρτισης (για την αρχιτεκτονική, την πολεοδομία, τον σχεδιασμό και τα συναφή επαγγέλματα) θα ενθαρρυνθούν να διδάσκουν σχετικά με θέματα προσβασιμότητας (14, 104). Θα πρέπει να υπάρχει επίσημη συνεργασία μεταξύ των ατόμων με αναπηρίες, των αντιστοίχων επαγγελματιών (επαγγελματίες αποκατάστασης, πολιτικούς, προγραμματιστές, μηχανικούς, αρχιτέκτονες και σχεδιαστές) και των άλλων ενδιαφερόμενων για την εξασφάλιση της συνέχισης της συμμετοχής στο πρόγραμμα προσβασιμότητας. Η τραγωδία μιας φυσικής καταστροφής μπορεί επίσης να αποτελέσει μια ευκαιρία για ανοικοδόμηση με γνώμονα την προσβασιμότητα. Στη Νέα Ζηλανδία το σχέδιο "Accessible Christchurch" ξεκίνησε μετά τους καταστροφικούς σεισμούς τον Ιούλιο του 2011, για να προβάλει τις ανάγκες των ατόμων με ειδικές ανάγκες και για να εξασφαλιστεί διαβίου η χρήση προτύπων σχεδιασμού στην ανοικοδόμηση. Μετά τον σεισμό στον Ινδικό Ωκεανό και το τσουνάμι του 2004, η ανοικοδόμηση στη Σρι Λάνκα έγινε με σκοπό να είναι πιο προσβάσιμη (βλέπε Πλαίσιο 7.1.). Έτσι, ακόμη και κυβερνήσεις που αντιμετωπίζουν οικονομικές δυσχέρειες μπορούν να προβούν σε σημαντικές κινήσεις προς την κατεύθυνση της προσβασιμότητας, όπως συνέβη και στην Αϊτή (130).
μαντικά την καθημερινότητα των ατόμων με ΚΝΜ . Ωστόσο, η προσβασιμότητα είναι σημαντική και για άλλες ομάδες πληθυσμού, όπως οι ηλικιωμένοι, οι γονείς με παιδικά καροτσάκια και οι άνθρωποι με άλλους περιορισμούς στην κινητικότητα τους (προσωρινούς ή μόνιμους). Η προσβασιμότητα λοιπόν βοηθά τους πάντες. Οι κατάλληλες πολιτικές και οι νόμοι, σε συνδυασμό με την αποτελεσματική επιβολή τους, είναι ουσιαστικής σημασίας για τη δημιουργία μιας "κουλτούρας προσβασιμότητας.". Οι ακόλουθες συστάσεις τονίζουν τα μέτρα που μπορούν να συμβάλουν στη δημιουργία αυτής της κουλτούρας.
Γενικές συστάσεις ■ Να υιοθετηθεί ο διεθνής σχεδιασμός των κτιρίων, των μέσων μεταφοράς και των κατοικιών που είναι προσβάσιμες από άτομα με κάκωση νωτιαίου μυελού ως επιλεγμένη προσέγγιση και να προωθηθεί η ενημέρωση για την πρασβασιμότητα σε όλα τα επίπεδα. ■ Να αναπτυχθούν σε τοπικό επίπεδο τα κατάλληλα πρότυπα προσβασιμότητας, ανταποκρινόμενα στις τοπικές παραδόσεις, ρυθμίσεις και ανάγκες. Στη συνέχεια, να συμπεριλαμβάνεται η προσβασιμότητα ως κριτήριο στο σχεδιασμό και τις αδειοδοτήσεις στον τομέα της στέγασης, του οικιστικού περιβάλλοντος και των μεταφορών, καθώς και να επιβλέπεται η συμμόρφωση προς τους νόμους για να εξασφαλιστεί ότι τηρούνται τα διεθνή πρότυπα προσβασιμότητας. ■ Να υπάρξει άμεση εμπλοκή των οργανώσεων των ατόμων με ΚΝΜ, καθώς και των ατόμων με αναπηρίες, στις προσπάθειες για την προσβασιμότητα, συμπεριλαμβανομένων του σχεδιασμού και της ανάπτυξης των πολιτικών, των προϊόντων και των υπηρεσιών, στην αξιολόγηση των αναγκών των χρηστών, καθώς και στην επίβλεψη της επιτελούμενης προόδου. ■ Να γίνονται συνεχείς βελτιώσεις του περιβάλλοντος, αρχίζοντας από τα βασικά εμπόδια και βελτιώνοντας σταδιακά τα πρότυπα και τους στόχους, ανάλογα με την αύξηση των διαθέσιμων πόρων. Η αρχή πρέπει να γίνει με τα ζωτικής σημασίας δη-
Συμπεράσματα και συστάσεις Το φυσικό περιβάλλον που περιβάλλει τα άτομα με ΚΝΜ μπορεί να διευκολύνει ή να εμποδίσει τη συμμετοχή και ένταξη τους στην κοινωνική, οικονομική, πολιτική και πολιτιστική ζωή. Υπάρχει ένα ευρύ φάσμα εμποδίων, και οι περισσότεροι άνθρωποι με ΚΝΜ ζουν με κάποια από αυτά τα εμπόδια που αφορούν την συμμετοχή στην καθημερινή τους ζωή (3, 6). Η βελτίωση της προσβασιμότητας βελτιώνει ση-
171
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
μόσια κτίρια όπως τα νοσοκομεία, τα κυβερνητικά γραφεία και τα σχολεία. Όταν υπάρχουν περιοριστικά οικονομικά πλαίσια, ο στρατηγικός σχεδιασμός πρέπει να εστιάζεται στις προτεραιότητες και να προγραμματίζει μια σειρά από συνεχώς διευρυνόμενους στόχους οι οποίοι να βασίζονται σε πιλοτικές μελέτες για να μαθαίνουμε από την εμπειρία τι είναι επιτυχές και με ποιο τρόπο. ■ Να αυξηθεί η εγρήγορση για να μειωθούν οι παρανοήσεις και οι προκαταλήψεις σχετικά με τις ΚΝΜ και τις άλλες αναπηρίες. Να βεβαιωθεί ότι το προσωπικό που εργάζεται στις δημόσιες και ιδιωτικές υπηρεσίες έχει επαρκή εκπαίδευση στην παροχή πρόσβασης και στην αντιμετώπιση αναπήρων πελατών με σεβασμό και ευαισθησία.
εύκολα την κατάλληλη προσβάσιμη στέγαση.
Μέσα μαζικής μεταφοράς ■ Να γίνει η προσβασιμότητα στις δημόσιες μεταφορές αναπόσπαστο μέρος της συνολικής πολιτικής μεταφορών της χώρας, ελεγχόμενη από τον αρμόδιο οργανισμό με εκπροσώπηση από ανθρώπους με κινητικές απαιτήσεις και άλλες ανάγκες πρόσβασης. ■ Να στοχεύεται η πλήρης διατήρηση της προσβασιμότητας σε όλη την ταξιδιωτική αλυσίδα με πρόβλεψη για βελτιώσεις σε πεζοδρόμια και οδικές διασταυρώσεις, καθώς και για πρόσβαση σε λεωφορεία, τραμ, τρένα και άλλα οχήματα.
Στέγαση ■ Να παρέχετε πληροφόρηση σχετικά με την αποδοτικότητα και την δυνατότητα προσαρμογής και ανακαίνισης του σπιτιού, και να βελτιώνεται το κόστος με την παροχή επιχορηγήσεων ή φορολογικών κινήτρων. ■ Να παρέχονται δημόσια και ιδιωτικά κίνητρα για αύξηση των αποθεμάτων προσβάσιμων κατοικιών. Να ενθαρρύνονται οι σύλλογοι των ατόμων με ΚΝΜ, οι τοπικές αρχές, οι οικοδομικοί συνεταιρισμοί και άλλοι συναφείς φορείς να συνεργαστούν με τους αναπτυξιακούς φορείς στο σχεδιασμό και την κατασκευή προσβάσιμων κατοικιών. ■ Να δημιουργηθεί ένα μητρώο προσιτής στέγασης για να μπορούν τα άτομα με ΚΝΜ να εντοπίζουν
Δημόσια κτίρια και χώροι ■ Να διασφαλίζεται η συμμόρφωση προς τα πρότυπα για τα νεόκτιστα ή ανακαινισμένα δημόσια κτίρια και τους χώρους σε συνδυασμό με τις νομοθετικές ρυθμίσεις, τα πρόστιμα και τις προϋποθέσεις αδειοδότησης, παράλληλα με την ευαισθητοποίηση του κοινού. ■ Να φροντίσεται η ύπαρξη των μεγαλύτερων δυνατών κυκλοφοριακών λωρίδων για προτεραιότητα προς τα δημόσια κτίρια και εγκαταστάσεις, όπως καθορίζονται σε τοπικό επίπεδο. ■ Να καθιερωθεί μια διαδικασία ελέγχου και να οριστεί μια ηγετική κυβερνητική υπηρεσία υπεύθυνη για την εφαρμογή του προγράμματος προσβασιμότητας.
Βιβλιογραφία 1. 2. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). Fougeyrollas P. Documenting environmental factors for preventing the handicap creation process: Quebec contributions relating to ICIDH and social participation of people with functional differences. Disability and Rehabilitation, 1995, 17:145- 153. doi: http://dx.doi.org/10.3109/09638289509166709 PMID:7787197 Gray DB et al. A subjective measure of environmental facilitators and barriers for people with mobility limitations. Disability and Rehabilitation, 2008, 30:434-457. doi: http://dx.doi.org/10.1080/09638280701625377 PMID:17943511 Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord, 2010, 48:73-79. doi: http://dx.doi.org/10.1038/sc.2009.92 PMID:19636329
3. 4.
172
Κεφάλαιο 7
Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης.
5.
6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28.
Noreau L, Fougeyrollas P, Boschen KA. The perceived influence of the environment on social participation among individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2002, 7:56-72. doi: http://dx.doi. org/10.1310/1UGA-EY2T-N6XP1PHE Whiteneck G et al. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1793-1803. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.024 PMID:15520974 Reinhardt JD, Post MWM. Measurement and evidence of environmental determinants of participation in spinal cord injury: a systematic review of the literature. Topics in Spinal Cord Injury Rehabilitation, 2010, 15:26-48. doi: http://dx.doi. org/10.1310/sci1504-26 WHO. World report on disability. Geneva, World Health Organization, 2011. Dovey K. Home and homelessness. In: Altman I, Wener CM, eds. Home environments, human behavior, and environment: advances in theory and research. New York, NY, Plenum, 1985:33-63. Heywood F. The health outcomes of housing adaptations. Disability & Society, 2004, 19:129-143. doi: http://dx.doi. org/10.1080/0968759042000181767 Rauh VA, Landrigan PJ, Claudio L. Housing and health intersection of poverty and environmental exposures. Annals of the New York Academy of Sciences, 2008, 1136:276-288. doi: http://dx.doi.org/10.1196/annals.1425.032 PMID:18579887 Mann WC et al. Environmental problems in the homes of elders with disabilities. The Occupational Therapy Journal of Research, 1994, 14:191-211. Stark S. Creating disability in the home: the role of environmental barriers in the United States. Disability & Society, 2001, 16:37-49. doi: http://dx.doi.org/10.1080/713662037 Steinfeld E, Shea SM. Enabling home environments: identifying barriers to independence. Technology and Disability, 1993, 2:69-79. Toran K. Accessible housing database and manual. Berkeley, CA, World Institute on Disability, 2000 (http://www.wid.org/ publications/accessible-housing-database-and-manual, accessed 28 March 2012). Forrest G, Gombas G. Wheelchair-accessible housing: its role in cost containment in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1995, 76:450-452. doi: http://dx.doi.org/10.1016/S0003-9993(95)80576-1 PMID:7741616 Moore W. NHS and local government try to stop introduction of “bed blocking” fines. British Medical Journal, 2003, 326:184. doi: http://dx.doi.org/10.1136/bmj.326.7382.184/g PMID:12549436 Eide AH, Benedicte I. Living conditions among people with disabilities in developing countries. In: Eide AH et al., eds. Disability and poverty: a global challenge. University of Bristol, The Policy Press, 2011, 55−70. IDRM. Regional report of the Americas. Chicago, IL, International Disability Rights Monitor, 2004 (http://idrmnet.org/pdfs/ IDRM_Americas_2004.pdf, accessed 27 March 2012). IDRM. Regional report of Asia. Chicago, IL, International Disability Rights Monitor, 2005 (http://idrmnet.org/pdfs/CIR_ IDRM_Asia_05.pdf, accessed 27 March 2012). IDRM. Regional report of Europe. Chicago, IL, International Disability Rights Monitor, 2007 (http://idrmnet.org/pdfs/IDRM_ Europe_2007.pdf, accessed 20 April 2012). Beresford R, Rhodes D. Housing and disabled children. York, Joseph Rowntree Foundation, 2008. Imrie R. The role of the building regulations in achieving housing quality. Environment and Planning. B, Planning & Design, 2004, 31:419-437. doi: http://dx.doi.org/10.1068/b3056 Milner J, Madigan R. Regulation and innovation: rethinking inclusive housing design. Housing Studies, 2004, 19:727-744. doi: http://dx.doi.org/10.1080/0267303042000249170 Habinteg. Mind the step. London, Habinteg Housing Association, 2010. Jacobs K et al. What future for public housing? A critical analysis. Hobart, Australian Housing and Urban Research Institute Southern Research Centre, 2010. Hills J. Ends and means: the future roles of social housing in England. London, ESRC Research Centre for Analysis of Social Exclusion/ London School of Economics and Political Science, 2007 (CASE report 34). Scanlon K, Whitehead C, eds. Social housing in Europe II: a review of policies and outcomes. London, London School of Economics, 2008.
173
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
29. 30. 31. 32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43.
44. 45. 46. 47. 48. 49. 50. 51.
Wehman P et al. Removing transportation barriers for persons with spinal cord injuries: an ongoing challenge to commu- nity reintegration. Journal of Vocational Rehabilitation, 1999, 13:21-30. Scheer J et al. Access barriers for persons with disabilities: the consumer’s perspective. Journal of Disability Policy Studies, 2003, 13:221-230. doi: http://dx.doi.org/10.1177/104420730301300404 Wee J, Paterson M. Exploring how factors impact the activities and participation of persons with disability: constructing a model through grounded theory. Qualitative Report, 2009, 14:165-200. United Spinal Association. Accessible air travel: a guide for people with disabilities. East Elmhurst, NY, United Spinal Association, 2012. (http://www.unitedspinal.org/disability-publications-resources/disability-publications/, accessed 26 March 2012). Iwarsson S, Jensen G, Ståhl A. Travel chain enabler: development of a pilot instrument for assessment of urban public bus transport accessibility. Technology and Disability, 2000, 12:3-12. Roberts P, Babinard J. Transport strategy to improve accessibility in developing countries. Washington, DC, World Bank, 2005. IRTU. Economic aspects of taxi accessibility. Paris/Geneva, European Conference of Ministers of Transport/International Road Transport Union, 2001. Stahl A. The provision of transportation for the elderly and handicapped in Sweden. Lund, Institutionen för Trafikteknik/Lunds Tekniska Högskola, 1995. Wretstrand A et al. Injuries in special transport services – situations and risk levels involving wheelchair users. Medical Engineering & Physics, 2009, 32:248-253. doi: http://dx.doi.org/10.1016/j.medengphy.2009.07.022 PMID:19720552 Sapey B, Stewart J, Donaldson G. Increases in wheelchair use and perceptions of disablement. Disability & Society, 2005, 20:489505. doi: http://dx.doi.org/10.1080/09687590500156162 Barf HA et al. Restrictions in social participation of young adults with spina bifida. Disability and Rehabilitation, 2009, 31:921-927. doi: http://dx.doi.org/10.1080/09638280802358282 PMID:19116807 Ahn HC et al. Architectural barriers to persons with disabilities in business in an urban community. The Journal of Burn Care & Rehabilitation, 1994, 15:175-179. doi: http://dx.doi.org/10.1097/00004630-199403000-00014 United States Access Board. Uniform Federal Accessibility Standards (UFAS). Washington, DC, United States Access Board, 2007 (http://www.access-board.gov/ufas/ufas-html/ufas.htm, accessed 27 March 2012). Schneider M, Couper J, Swartz L. Assessment of accessibility of health facilities to persons with disabilities. Matieland, Stellenbosch University, 2010. Allotey P et al. The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegia in Australia and Cameroon. Social Science & Medicine, 2003, 57:949-958. doi: http://dx.doi.org/10.1016/S0277- 9536(02)00463-X PMID:12850119 Rimmer JH et al. Accessibility of health clubs for people with mobility disabilities and visual impairments. American Journal of Public Health, 2005, 95:2022-2028. doi: http://dx.doi.org/10.2105/AJPH.2004.051870 PMID:16254234 Williams R et al. Outdoor recreation participation of people with mobility disabilities. Selected results of the National Survey of Recreation and the Environment. Journal of Park and Recreation Administration, 2004, 22:85-101. Xiang H et al. Risk of vehicle–pedestrian and vehicle–bicyclist collisions among children with disabilities. Accident; Analysis and Prevention, 2006, 38:1064-1070. doi: http://dx.doi.org/10.1016/j.aap.2006.04.010 PMID:16797463 Tight MR, Carsten OMJ, Sherborne D. Problems for vulnerable road users in Great Britain. Working Paper 292. Leeds, Institute for Transport Studies, University of Leeds, 1989. Williams K, Savill T, Wheeler A. Review of the road safety of disabled children and adults. TRL Report TRL559. Wokingham, Transport Research Laboratory, 2002. Martin LM. Wheelchair accessibility of public buildings in Utica, New York. The American Journal of Occupational Therapy., 1987, 41:217-221. doi: http://dx.doi.org/10.5014/ajot.41.4.217 PMID:3688133 Rivano-Fischer D. Wheelchair accessibility of public buildings in Al Ain, United Arab Emirates (UAE). Disability and Rehabilitation, 2004, 26:1150-1157. doi: http://dx.doi.org/10.1080/096382804100017214843 PMID:15371028 Scelza WM et al. Perceived barriers to exercise in people with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2005,84:576583.doi:http://dx.doi.org/10.1097/01.phm.0000171172.96290.67 PMID:16034226
174
Κεφάλαιο 7
Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης.
52. 53. 54. 55. 56. 57.
58.
59. 60.
61.
62. 63. 64. 65. 66. 67. 68.
Welage N, Liu KPY. Wheelchair accessibility of public buildings: a review of the literature. Disability and Rehabilitation. Assistive Technology, 2011, 6:1-9. doi: http://dx.doi.org/10.3109/17483107.2010.522680 PMID:20958181 Hamzat TK, Dada OO. Wheelchair accessibility of public buildings in Ibadan, Nigeria. Asia Pacific Disability Rehabilitation Journal, 2005, 16:115-124. Waenlor W et al. Facilities for the disabled in the commercial districts of Bangkok − are they adequate? The Southeast Asian Journal of Tropical Medicine and Public Health, 2002, 33 Suppl. 3:164-165. PMID:12971501 UNESCAP. Disability at a glance 2009: a profile of 36 countries and areas in Asia and the Pacific. Bangkok, United Nations Economic and Social Commission for Asia and the Pacific, 2009. NDA. Building for everyone: inclusion, access and use. Dublin, National Disability Authority, 2002 (http://www.nda.ie/cntmgmtnew.nsf/0/EBD4FB92816E8BB480256C830060F761/$File/Building_for_Everyone.pdf, accessed 28 March 2012). UNAPD. Uganda National Action on Physical Disability. Accessibility standards. A practical guide to create a barrier-free physical environment in Uganda. Kampala, National Action on Physical Disability/Ministry of Gender, Labour and Social Development, 2010 (http://www.danskhandicapforbund.dk/index.php/download_file/-/view/835/, accessed April 11, 2012). USA. National Commission on Architectural Barriers. Design for all Americans. A report of the National Commission on Architectural Barriers to Rehabilitation of the Handicapped. Washington, DC, US Government Printing Office, 1967 (http:// www.eric.ed.gov/PDFS/ED026786.pdf, accessed 28 March 2012). Newman SD. Evidence-based advocacy using Photovoice to identify barriers and facilitators to community participa- tion after spinal cord injury. Rehabilitation Nursing, 2010, 35:47-59. doi: http://dx.doi.org/10.1002/j.2048-7940.2010. tb00031.x PMID:20306612 World Bank. People with disabilities in India: from commitments to outcomes. Washington, DC, World Bank, 2009 (http:// siteresources.worldbank.org/INDIAEXTN/Resources/295583-1171456325808/DISABILITYRE PORTFINALNOV2007.pdf?bcsi_ scan_C7A381BA8BD8A412=0&bcsi_scan_filename=DISABILITYREPORTFINALNOV2007.pdf accessed 28 April 2012). Council of Canadians with Disabilities. Celebrating our accomplishments. Winnipeg, Council of Canadians with Disabilities, 2011. (http://www.ccdonline.ca/media/socialpolicy/booklet2011/celebrating-our-accomplishments.pdf?bcsi_scan_ C7A381BA8BD8A412=0&bcsi_scan_filename=celebrating-our-accomplishments.pdf, accessed 28 March 2012). Venter C et al. Enhanced accessibility for people with disabilities living in urban areas. Ithaca, NY, Cornell University,2002. (http://digitalcommons. ilr.cornell.edu/cgi/viewcontent.cgi?article=1258&context=gladnetcollect&sei-redir=1&referer=http%3A%2F% 2Fwww.google.ch%2Furl%3Fsa%3Dt%26rct%3Dj%26q%3Dpr%252Fint%252F24%252F02%26source%3Dweb% 26cd%3D1%26sqi%3D2%26ved%3D0CCMQFjAA%26url%3Dhttp%253A%252F%252Fdigitalcommons.ilr. cornell.edu%252Fcgi%252Fviewcontent.cgi%253Farticle%253D1258%2526context%253Dgladnetcollect%26ei% 3DXeOHT6LtGI-xhAeY49DSCQ%26usg%3DAFQjCNH_Z84ektdtheC2GJkOEpCIOWz__g% 26sig2%3DJm3pxr0 kB7v7fNPOxCNYFg&bcsi_scan_97961A1EAF8C426F=8OF3I6CqR1a6YeGeQbpDFIMfwCxTAAAANYbiDQ==&bcsi_scan filename=viewcontent.cgi, accessed 13 April 2012). Kunieda M, Roberts P. Inclusive access and mobility in developing countries. Washington, DC, World Bank, 2007 (http://siteresources.worldbank.org/INTTSR/Resources/07-0297.pdf, accessed 28 March 2012). Clarke-Scott MA, Nowlan S, Gutman G. Progressive housing design and home technologies in Canada. In: Preiser WFE, Ostroff E, eds. Universal design handbook. New York, NY, McGraw Hill, 2001, 36.1–36.20. Raheja G. Enabling environments for the mobility impaired in the rural areas. Roorkee, Indian Institute of Technology, 2008. Imrie R, Kumar M. Focusing on disability and access in the built environment. Disability & Society, 1998, 13:357-374. doi: http://dx.doi.org/10.1080/09687599826687 Noreau L, Boschen K. Intersection of participation and environmental factors: a complex interactive process. Archives of Physical Medicine and Rehabilitation, 2010, 91 Suppl:S44-S53. doi: http://dx.doi.org/10.1016/j.apmr.2009.10.037 PMID:20801279 Reinhardt JD et al. Measuring impact of environmental factors on human functioning and disability: a review of various scientific approaches. Disability and Rehabilitation, 2011, 33:2151−2165 (E-pub 7 May 2011). Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors. Archives of Physical Medicine and Rehabilitation, 2009, 90 Suppl:S22-S35. doi: http://dx.doi. org/10.1016/j.apmr.2009.06.009 PMID:19892071
175
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
69. 70. 71.
72. 73. 74. 75. 76. 77. 78. 79.
80.
81. 82. 83. 84. 85.
86.
87. 88.
Fänge A, Iwarsson S. Physical housing environment: Development of a self-assessment instrument. Canadian Journal of Occupational Therapy, 1999, 66:250-260. PMID:10641377 Fänge A, Iwarsson S. Accessibility and usability in housing: construct validity and implications for research and practice. Disability and Rehabilitation, 2003, 25:1316-1325. PMID:14617438 Green RJ. An introductory theoretical and methodological framework for a universal mobility index (UMI) to quantify, compare, and longitudinally track equity of access across the built environment. Journal of Disability Policy Studies, 2011, 21:219-229. doi: http://dx.doi.org/10.1177/1044207310384998 Stark S et al. Development of a measure of receptivity of the physical environment. Disability and Rehabilitation, 2007, 29:123-137. doi: http://dx.doi.org/10.1080/09638280600731631 PMID:17364763 Stark SL et al. The interrater reliability of the community health environment checklist. Archives of Physical Medicine and Rehabilitation, 2008, 89:2218-2219. doi: http://dx.doi.org/10.1016/j.apmr.2008.04.020 PMID:18996253 Heywood F. Money well spent: the effectiveness and value of housing adaptations, Bristol, The Policy Press, 2001. Olsen RV, Ehrenkrantz E, Hutchings B. Creating supporting environments for people with dementia and their caregivers through home modifications. Technology and Disability, 1993, 2:47-57. Stark S. Home modifications that enable occupational performance. In: Letts L, Rigby P, Stewart D, eds. Using environments to enable occupational performance. Thorofare, NJ, Slack, 2003. Tually S, Beer A, Mcloughlin P. Housing assistance, social inclusion and people living with a disability. AHURI Final Report 178. Melbourne, Australian Housing and Urban Research Institute Southern Research Centre, 2011. Fänge A, Iwarsson S. Changes in accessibility and usability in housing: an exploration of the housing adaptation process. Occupational Therapy International, 2005, 12:44-59. doi: http://dx.doi.org/10.1002/oti.14 PMID:15962699 Ratzka A. A brief survey of studies on costs and benefits of non-handicapping environments. Presentation at the International Congress on Accessibility in Rio de Janeiro, Brazil, June 1994. Stockholm, Independent Living Institute, 1994 (http://www. independentliving.org/cib/cibrio94access.html, accessed 28 March 2012). Lansley P et al. Adapting the homes of older people: a case study of costs and savings. Building Research and Information: the international journal of research, development and demonstration, 2004, 32:468–483. doi:10.1080/ 0961321042000269429 doi: http://dx.doi.org/10.1080/0961321042000269429 Jones C. Review of housing adaptations including disabled facilities grants – Wales. Cardiff, Welsh Assembly Government, 2005 (http://new.wales.gov.uk/dsjlg/research/houseadaptreview/reviewe.pdf?lang=en, accessed 27 March 2012). CMHC/SCHL. Homeowner residential rehabilitation assistance program. Homeowner RRAP. Ottawa, Canadian Mortgage and Housing Corporation (http://www.cmhc-schl.gc.ca/en/co/prfinas/prfinas_001.cfm, accessed 28 March 2012). Tremblay KR, Birdsong C. Home adaptations for disabled persons. Fact sheet No. 9.529. Fort Collins, CO, Colorado State University, 2011 (http://www.ext.colostate.edu/pubs/consumer/09529.pdf, accessed 11 April 2012). WHO. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. Cities Alliance. The enabling environment for housing finance in Kenya. Civis: Shelter Finance for the Poor Series, 2003, issue 4. Washington, DC, Cities Alliance, 2003 (http://www.citiesalliance.org/ca/sites/citiesalliance.org/files/ Kenya+CIVIS+April03[1].pdf, accessed 27 March 2012). Cities Alliance. The enabling environment for housing finance in Kenya. Civis: Shelter Finance for the Poor Series, 2003, issue 4. Washington, DC, Cities Alliance, 2003 (http://www.citiesalliance.org/ca/sites/citiesalliance.org/files/ Kenya+CIVIS+April03[1].pdf, accessed 27 March 2012). Parker S, Fisher KR. Facilitators and barriers in Australian disability housing support policies: using a human rights frame- work. Disability Studies Quarterly, 2010, 30:3-4. Hammerman CD, Bennett S. The disability housing market: opportunity for community development finance as the Americans with Disabilities Act turns 20. Community Development Investment Review, 2009, 5:88−96 (http://www.frbsf.org/ publications/community/review/vol5_issue3/hammerman_bennett.pdf, accessed 27 March 2012).
176
Κεφάλαιο 7
Κάκωση Νωτιαίου Μυελού και περιβάλλον με δυνατότητες πρόσβασης.
89.
90. 91.
92. 93. 94. 95. 96.
97. 98. 99.
100.
101.
102. 103. 104. 105. 106.
107. 108. 109.
Scotts M, Saville-Smith K, James B. International trends in accessible housing for people with disabilities: a selected review of policies and programmes in Europe, North America, United Kingdom, Japan and Australia. Wellington, Centre for Research, Evaluation and Social Assessment, 2007 (http://www.chranz.co.nz/pdfs/working-paper-2.pdf, accessed 11 April 2012). Brewerton J, Darton D, eds. Designing lifetime homes. York, Joseph Rowntree Foundation, 1997. Mayor of London. London Accessible Housing Register: a good practice guide for social housing landlords. London, Mayor of London, 2011 (http://www.london.gov.uk/sites/default/files/LAHR%20Good%20practice%20guide%202011.pdf, accessed 28 March 2012). Truesdale S, Steinfeld E. Visit-ability: an approach to universal design in housing. Buffalo, NY, Center for Inclusive Design and Environmental Access, 2002. Schwartz AF. Housing policy in the United States: an introduction. New York, NY, Routledge, 2006. Doble A, Sieniuc R. Integration and innovation: the Seabird Island project. ArchitectureBC. Journal of the Architectural Institute of British Columbia, 2003, Issue 10, 13–20. European Commission. 2010: A Europe accessible for all. ETCAATS, e-learning for accessible tourism, 2003 (http://www. etcaats.eu/?i=etcaats.en.etcaatslibrary.852, accessed 6 March 2012). CECODHAS. Housing organisations creating social capital. Exchange (published by CECODHAS Housing Europe – The European Federation of Public, Cooperative & Social Housing, Brussels), Spring 2009 (http://www.housingeurope.eu/www. housingeurope.eu/uploads/file_/exch%20spring_09en.pdf accessed 11 April 2012). Randall B. Breaking down the barriers: social housing for people with disabilities in Europe. Brussels, European Liaison Committee for Social Housing, 2010. Whitehead C, Scanlon K. Social housing in Europe. London, London School of Economics, 2007 (http://vbn.aau.dk/ files/13671493/SocialHousingInEurope.pdf, accessed 4 January 2012). SELHP. Wheelchair homes design guidelines. Guidelines to achieve the necessary standards for wheelchair users’ dwellings. London, South East London Housing Partnership, 2008 (http://www.selondonhousing.org/Documents/080530%20 WC%20guide%20May%2008.pdf, accessed 28 March 2012). South Australia. Housing options for people with a disability. Adelaide, Government of South Australia (http://www.sa.gov. au/subject/Community+Support/Disability/Adults+with+disability/Housing+and+home+assistance/Housing+options+f or+people+with+a+disability, accessed 28 March 2012). Rwanda. Rwanda demobilization program builds homes for disabled ex-combatants (News release). Kigali, World Bank, 2009 (http://web.worldbank.org/WBSITE/EXTERNAL/COUNTRIES/ AFRICAEXT/0,contentMDK:22275330~page PK:146736~piPK:22 6340~theSitePK:258644,00.html, accessed 28 March 2012). Leonardi M et al. Integrating research into policy planning: MHADIE policy recommendations. Disability and Rehabilitation, 2010, 32 Suppl 1:S139-S147. doi: http://dx.doi.org/10.3109/09638288.2010.520807 PMID:20874663 Wretstrand A et al. Older people and local public transit: mobility effects of accessibility improvements in Sweden. Journal of Transport and Land Use, 2010, 2:49-65. Steinfeld E. Universal design in mass transportation. In: Preiser WFE, Ostroff E, eds. Universal design handbook. New York, NY, McGraw Hill, 2001:24.1–24.25. Daamen W, De Boer E, De Kloe R. Assessing the gap between transport vehicles and platforms as a barrier for the disabled: use of laboratory experiments. Transportation Research Record, 2008, 2072:131-138. doi: http://dx.doi.org/10.3141/2072-14 Dejeammes M. Overview of technological developments for accessible transport systems and mobility in Europe. Paper delivered at the 12th International Conference on Mobility and Transport for Elderly and Disabled Persons (TRANSED), Hong Kong, 2−4 June 2010 (http://www.sortclearinghouse.info/cgi/viewcontent.cgi?article=1647&context=research accessed 28 March 2012). SageTravelingwebsite.DisabledtraveltoEurope.(http://www.sagetraveling.comaccessed2013). Rickert T. Bus rapid transit accessibility guidelines. Washington, DC, World Bank, 2007 (http://siteresources.worldbank.org/ DISABILITY/Resources/280658-1172672474385/BusRapidEngRickert.pdf, accessed 20 April 2012). Wright L. Planning guide: bus rapid transit. Eschborn, Deutsche Gesellschaft für Technische Zusammenarbeit, 2004 (http:// ecoplan.org/library/clinton/brt-planning%20guide-gtz.pdf, accessed 28 March 2012).
177
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
110. ImrieR.Disabilityandthecity:internationalperspectives.London,PaulChapmanPublishing,1996. 111. WaltersJ.OverviewofpublictransportpolicydevelopmentsinSouthAfrica.ResearchinTransportationEconomics,2008, 22:98-108. doi: http://dx.doi.org/10.1016/j.retrec.2008.05.023 112. MaynardA.Canmeasuringthebenefitsofaccessibletransportenableaseamlessjourney?JournalofTransportandLand Use, 2009, 2:2130. 113. SchalekampHetal.Aninternationalreviewofparatransitregulationandintegrationexperiences.Lessonsforpublic transport system rationalisation and improvement in African cities. Rondebosch, African Centre of Excellence for Studies in Public and Non-motorised Transport (ACET), 2010 (http://www.fut.se/download/18.1166db0f120540fe049800010991/ Mfinanga++international+review.pdf, accessed 28 March 2012). 114. StåhlA.Adaptationofthewholetravelchain–benefitsandattitudes.Paperpresentedatthe23rdPTRCEuropeanTransport Forum, Coventry, United Kingdom, 1996. 115. InternationalITS.FLIPPER:improvingtheprovisionofflexibletransportservices.2009(http://www.itsinternational.com/sec- tions/transmart/features/flipper-improving-the-provision-of-flexible-transport-services/?locale=en, accessed 11 April 2012). 116. Finn B. Market role and regulation of extensive urban minibus services as large bus service capacity is restored: case studies from Ghana, Georgia and Kazakhstan. Research in Transportation Economics, 2008, 22:118-125. doi: http://dx.doi. org/10.1016/j.retrec.2008.05.012 117. LindauLAetal.Alternativefinancingforbusrapidtransit(BRT):thecaseofPortoAlegre,Brazil.ResearchinTransportation Economics, 2008, 22:54-60. doi: http://dx.doi.org/10.1016/j.retrec.2008.05.018 118. Peters B. Driving performance and workload assessment of drivers with tetraplegia: an adaptation evaluation framework. Journal of Rehabilitation Research and Development, 2001, 38:215-224. PMID:11392654 119. Biering-SørensenF,HansenRB,Biering-SørensenJ.Mobilityaidsandtransportpossibilities10−45yearsafterspinalcord injury. Spinal Cord, 2004, 42:699-706. doi: http://dx.doi.org/10.1038/sj.sc.3101649 PMID:15289807 120. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/ oti.228 PMID:17624872 121. Kohrman M. Motorcycles for the disabled: mobility, modernity and the transformation of experience in urban China. Culture, Medicine and Psychiatry, 1999, 23:133-155. doi: http://dx.doi.org/10.1023/A:1005455815637 PMID:10388946 122. Kiyono Y et al. Car-driving ability of people with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2001, 82:1389- 1392. doi: http://dx.doi.org/10.1053/apmr.2001.26089 PMID:11588742 123. Wallace JF. A policy analysis of the assistive technology alternative financing program in the United States. Journal of Disability Policy Studies, 2003, 14:74-81. doi: http://dx.doi.org/10.1177/10442073030140020301 124. Dalto M. Maryland’s assistive technology loan program: successful outreach and partnerships. Journal of Disability Policy Studies, 2003, 14:91-94. doi: http://dx.doi.org/10.1177/10442073030140020601 125. Motability Operations. Your guide to getting a Motability car: Car Info Guide April 2011. London, Motability Operations, 2011 (http://www.motabilitycarscheme.co.uk/documents/PDFs/Car%20Scheme/Your%20guide%20to%20getting%20a%20 Motability%20car.pdf, accessed 28 March 2012). 126. Hammond M. The Utah Assistive Technology Foundation: program features and initiatives. Journal of Disability Policy Studies, 2003, 14:95-97. doi: http://dx.doi.org/10.1177/10442073030140020701 127. RoyalBankofScotlandGroupPlcvAllen,2009,EWCACiv1213.EnglandandWalesCourtofAppeal(CivilDivision)Decisions (http://www.bailii.org/ew/cases/EWCA/Civ/2009/1213.html, accessed 20 April 2012). 128. McClain L. Shopping center wheelchair accessibility: ongoing advocacy to implement the Americans with Disabilities Act of 1990. Public Health Nursing (Boston, Mass.), 2000, 17:178-186. doi: http://dx.doi.org/10.1046/j.1525- 1446.2000.00178.x PMID:10840287 129. AMCTO. Ontario municipal accessibility toolkit. Mississauga, Association of Municipal Managers, Clerks and Treasurers of Ontario, 2010 (http://www.accessiblemunicipalities.ca/home.asp, accessed 27 March 2012). 130. Iezzoni LI, Ronan LJ. Disability legacy of the Haitian earthquake. Annals of Internal Medicine, 2010, 152:812-814. PMID:20231547
178
Κεφάλαιο 8 Εκπαίδευση και εργασία
179
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
"Οι δάσκαλοι του σχολείου μου, οι φίλοι και η οικογένεια μου είναι υποστηρικτικοί επειδή γνωρίζουν σε τι είμαι ικανός. Τα παιδιά από άλλα σχολεία με πειράζουν μόνο και μόνο επειδή είμαι σε αναπηρικό αμαξίδιο. Τελοσπάντων, σταμάτησαν να με πειράζουν επειδή είχα μερικά καλά αποτελέσματα… Αν ήθελα να αλλάξω κάτι, θα ήταν η συμπεριφορά των ανθρώπων στους αναπήρους. Να μας συμπεριφέρονται ως κανονικούς ανθρώπους αντί να λυπούνται ή να νιώθουν ότι είμαστε χαζοί". (Kiringawa, New Zealand) "Καθηγητές και διοικητικό προσωπικό συχνά αποτύγχαναν να κατανοήσουν την ανάγκη προγραμματισμού των διαλέξεων σε αίθουσες προσβάσιμες από αναπηρικό αμαξίδιο. Δυσκολευόταν να καταλάβουν γιατί περίπου 300 μαθητές έπρεπε να ταλαιπωρηθούν για να συνυπάρξουν με ένα άτομο με αναπηρία. Επίσης, οι συμφοιτητές μου είχαν την τάση να θεωρούν την ιδιαίτερη αντιμετώπιση ως άδικο πλεονέκτημα… Τώρα έγινε πρόσληψη Υπαλλήλου για την αναπηρία στο πανεπιστήμιο. Σαν αποτέλεσμα, διοικητικό προσωπικό, καθηγητές και φοιτητές ευαισθητοποιούνται συνεχώς για την εύλογη συνύπαρξη με φοιτητές με αναπηρία σε συμφωνία με την υφιστάμενη νομοθεσία της Νοτίου Αφρικής". (Lizelle, South Africa) "Όταν αρρώστησα εργαζόμουν κάνοντας παράδοση τροφίμων σε σπίτια. Πίστεψα ότι θα χάσω τη δουλειά μου εξαιτίας της αναπηρίας. Ο ιδιοκτήτης του καταστήματος πάντα μου έλεγε ότι μπορώ να κρατήσω τη δουλειά μου. Όταν μπόρεσα να επιστρέψω στην εργασία μου, έγινα υπεύθυνος του καταστήματος: ελέγχω τα προϊόντα, παρακολουθώ τους προμηθευτές, ελέγχω τους υπαλλήλους και τις εισπράξεις. Το να εργάζομαι με κάνει να αισθάνομαι καλά, μου επιτρέπει να σχετίζομαι με άλλους ανθρώπους, να βγαίνω από το σπίτι μου, να έχω ένα μέλλον. Πραγματικά βοηθάει πολύ στο να ξεχνάω τις έγνοιες που προκλήθηκαν από τον τραυματισμό μου". (José, Argentina) "Πριν από έξι χρόνια, στην ηλικία των 30, η φυματίωση της σπονδυλικής στήλης με έκανε παραπληγικό. Κατά τη διάρκεια του πρώτου έτους ένιωθα άσχημα και έπαθα κατάθλιψη. Αρνιόμουν να κάνω οτιδήποτε εκτός από το να ξαπλώνω στο κρεβάτι. Μια μέρα, η μητέρα μου με πίεσε να επισκεφτώ ένα γείτονα. Όταν τον είδα ξαπλωμένο στο κρεβάτι χωρίς να μπορεί να κουνήσει κανένα άκρο αλλά εξακολουθούσε να χαμογελά, κοίταξα τον εαυτό μου και συνειδητοποίησα ότι είχα φυσιολογικά χέρια και μπορούσα να κάνω παραπάνω. Από τότε και στο εξής, ξεκίνησα να περιποιούμαι τον εαυτό μου μόνος μου και παρακολούθησα ένα μάθημα επαγγελματικής αποκατάστασης για αναπήρους. Τώρα δουλεύω ένα μικρό κατάστημα ηλεκτρονικών στο σπίτι και κερδίζω περίπου 3000 μπατ το μήνα, τα οποία είναι αρκετά για να ζω". (Boonpeg, Thailand) "Μόλις αποδέχτηκα την αναπηρία μου και αναδείχτηκα μέσω των σπορ, η πόρτα για τη ζωή άνοιξε. Η επιθυμία να είμαι απασχολούμενος ήταν διακαής. Δέχτηκα πολύ μεγάλη βοήθεια από την Υπηρεσία Απασχόλησης, που μου βρήκε δουλειά σε μια κρατική εταιρεία… Σύντομα ανακάλυψα ότι ήθελα να πετύχω περισσότερα και ξεκίνησα να αναζητώ άλλη δουλειά. Βρήκα δουλειά σε μια ιδιωτική επιχείρηση όπου απέκτησα πολύ εμπειρία. Ήμουν τυχερός που ήρθα σε ένα περιβάλλον όπου η άνθρωποι κρίνονται από τις ικανότητες τους και όχι την αναπηρία τους. Έγινα διευθύνων σύμβουλος σε μερικά χρόνια". (Janez, Slovenia) 180
Εκπαίδευση και εργασία Η εκπαίδευση αφορά το να γίνεσαι ενεργό μέλος της κοινωνίας, όχι απλά να μαθαίνεις. Η εργασία αφορά το να ανήκεις, όχι μόνο να έχεις εισόδημα. Οι άνθρωποι με Κάκωση Νωτιαίου Μυελού (ΚΝΜ) δικαιούνται να συμμετέχουν στη μόρφωση και στην εργασία επί ίσοις όροις με τους υπολοίπους. Το άρθρο 24 της σύμβασης για τα δικαιώματα των ατόμων με αναπηρία των Ηνωμένων Εθνών (Convention on the Rights of Persons with Disabilities-CRPD) (1) τονίζει την ανάγκη για τις κυβερνήσεις να εξασφαλίζουν ίση πρόσβαση σε ένα "σύστημα εκπαίδευσης χωρίς αποκλεισμούς σε όλα τα επίπεδα" και να παρέχουν εύλογες προσαρμογές και εξατομικευμένες υποστηρικτικές υπηρεσίες για να διευκολύνουν την εκπαίδευση. Το άρθρο 27 απαγορεύει οποιαδήποτε μορφή διάκρισης στην εργασία, προάγει την πρόσβαση σε επαγγελματική εκπαίδευση και ευκαιρίες για αυτoαπασχόληση και ζητεί τις εύλογες προσαρμογές στον εργασιακό χώρο. Η μόρφωση θα είναι ένα βήμα προς την εργασία και την κοινωνική συμμετοχή για: ■ το παιδί που έχει γεννηθεί με δισχιδή ράχη και πρέπει να περάσει από όλα τα επίπεδα εκπαίδευσης, από το δημοτικό έως το πανεπιστήμιο και παραπέρα, ■ το νεαρό ενήλικα που επιθυμεί να συνεχίσει το σχολείο ή το πανεπιστήμιο μετά από μία επίκτητη ΚΝΜ, ■ τον ενήλικα με επίκτητη ΚΝΜ που χρειάζεται να επανεκπαιδευτεί ή να αναβαθμίσει τις δεξιότητες του ούτως ώστε να ανοίξει η δίοδος για εναλλακτικές καριέρες. Η ενσωμάτωση στο γενικό εκπαιδευτικό σύστημα μπορεί να χρειαστεί κάποια προσαρμογή του περιβάλλοντος. Ένα νέο άτομο μπορεί επίσης να χρειαστεί συμβουλευτική και υποστηρικτική για να ξεπεράσει συναισθήματα χαμηλής αυτοεκτίμησης ή αυτοσυνείδησης, τα οποία μπορεί να σταθούν εμπόδιο στην επιστροφή του ατόμου στο σχολείο ή στο να κάνει τα επόμενα βήματα προς την ανώτερη εκπαίδευση. Το να αποκτήσει και να διατηρήσει μια εργασία ή η επιστροφή στην εργασία, που είχε πριν τη βλάβη, μπορεί επίσης να αποδεικτεί πρόκληση για ένα άτομο με ΚΝΜ. Παρόλα αυτά με επαγγελματική αποκατάσταση, συμβουλευτική και προετοιμασία, με κατάλληλη βοήθεια από την τεχνολογία και με προσαρμογές και τροποποιήσεις από το μέρος του εργοδότη, οι άνθρωποι με ΚΝΜ μπορούν να εκτελέσουν τις περισσότερες εργασίες. Η εργασία δεν είναι σημαντική απλά ως πηγή οικονομικής εξασφάλισης, παρέχει επίσης τη βάση για μια ζωή με νόημα, προσφέροντας κοινωνικές επαφές και μια αίσθηση σκοπού και αξίας. Η πλήρης συμμετοχή στην εκπαίδευση και στην εργασία για τα άτομα με ΚΝΜ εξαρτάται από την κατάρριψη των παρανοήσεων για την κατάσταση. Όταν οι καθηγητές, η διοίκηση του σχολείου και οι συμμαθητές μάθουν για την ΚΝΜ, αυτή η γνώση θα διευκολύνει τη μετάβαση ή την επιστροφή στην εκπαίδευση του παιδιού ή του νεαρού ενήλικα με ΚΝΜ. Στο εργασιακό πλαίσιο, 181
8
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
υποθέσεις για το τι δεν μπορεί να κάνει ένας εργαζόμενος με ΚΝΜ μπορεί να εμποδίσουν ακόμη και κάποιον με καλά προσόντα από το να προσληφθεί, ή τον ήδη εργαζόμενο να έχει το σεβασμό των συνεργατών του. Συχνά ο καλύτερος τρόπος να αντιμετωπιστούν οι παρανοήσεις που αφορούν την ΚΝΜ είναι μέσω της άμεσης εμπειρίας, της μάθησης ή της εργασίας δίπλα σε κάποιον με ΚΝΜ.
Κάκωση νωτιαίου μυελού και συμμετοχή στην εκπαίδευση Τα παιδιά με αναπηρίες πιο σπάνια ξεκινούν το σχολείο, συνεχίζουν το σχολείο και έχουν μικρότερα ποσοστά προαγωγής στο σχολείο (2). Σε χώρες με χαμηλότερο βιοτικό επίπεδο υπάρχει περιορισμένη πρόσβαση στη μόρφωση σε όλα τα επίπεδα (3), και σχεδόν καμία πρόσβαση στην ανώτατη εκπαίδευση για νέους ανθρώπους με αναπηρίες (4-6). Δημογραφικά στοιχεία από το Μαλάουι, τη Ζάμπια και τη Ζιμπάμπουε έδειξαν ότι από 9% έως και 18% των παιδιών πάνω από 5 ετών δεν έχουν πάει ποτέ σχολείο, ενώ στα παιδιά με αναπηρία αυτό το ποσοστό κυμαίνεται από 24% έως και 39% (7-10). Μια μελέτη στην Καμπότζη δείχνει ότι και 45% δεν έχουν πάει ποτέ σχολείο (11). Σε πολλές χώρες με χαμηλό μέσο εισόδημα η γενική έλλειψη πόρων για την παιδεία το κάνει πάρα πολύ δύσκολο να διευκολυνθούν τα παιδία με ΚΝΜ ή κάποια άλλη αναπηρία (12). Η συνεχόμενη έλλειψη χρηματοδότησης οδηγεί σε μία μόνιμη υποστελέχωση, έλλειψη ιατρικής περίθαλψης, και έλλειψη εξοπλισμού και υποδομών (13). Στοιχεία από την Κένυα, για παράδειγμα, υποδεικνύουν εμπόδια στην πρόσβαση σε ανώτερη εκπαίδευση, τα οποία κυμαίνονται από την έλλειψη σχολών μετά τη μέση εκπαίδευση, έως φυσική έλλειψη πρόσβασης, έλλειψη υπηρεσιών μετάβασης από τη δευτεροβάθμια εκπαίδευση, ή κοινωνικοί φραγμοί, όπως ο στιγματισμός, και το κακό οικονομικό υπόβαθρο των μαθητών με αναπηρία (4). Οι προκλήσεις που αντιμετωπίζουν οι χώρες μεσαίων και χαμηλών εισοδημάτων για να συμπεριλάβουν όλα τα παιδιά με αναπηρία στη μόρφωση, είναι τεράστιες, αλλά μπορούμε να έχουμε πρόοδο, ειδικά εαν ακούσουμε προσεκτικότερα, αυτό που έχουν να πουν οι μαθητές με αναπηρία και οι γονείς τους (14). 182
Παρ' ότι υπάρχουν διαθέσιμα στοιχεία για τη συμμετοχή παιδιών και νέων ενηλίκων με αναπηρία στη μόρφωση, είναι σπάνιο να μπορέσουν να ξεχωρίσουν τα στοιχεία που παρέχουν πληροφορίες για τις ΚΝΜ. Μερικές φορές είναι δυνατόν μόνο να συμπεραίνουμε από στοιχεία, που έχουμε για "ορθοπεδικές" ή "σωματικές" αναπηρίες για να αποκτήσουμε κάποια εικόνα. Η πλειοψηφία των παιδιών με ΚΝΜ επιστρέφουν στο σχολείο μετά τον τραυματισμό τους και την αποκατάσταση, το οποίο δημιουργεί την ανάγκη συγκεκριμένων υπηρεσιών (15). Εφόσον τα συμβάντα ΚΝΜ έχουν μεγαλύτερα ποσοστά σε νέα άτομα στα τέλη της 2ης δεκαετίας και στις αρχές της 3ης δεκαετίας της ζωής τους (βλ. κεφάλαιο 2), έχουμε εστιάσει στην επιστροφή στην δευτεροβάθμια και στην τριτοβάθμια εκπαίδευση (16). Η ομάδα της παιδικής ηλικίας, που ξεκινάει το σχολείο, αποτελείται σχεδόν αποκλειστικά από παιδιά με δισχιδή ράχη (17), τα οποία αντιμετωπίζουν ειδικές δυσκολίες, το οποίο τα ξεχωρίζει από αυτά, που επιστρέφουν στο σχολείο μετά από κάποιο τραυματισμό. Παρ' όλα αυτά η διασπορά της ηλικίας κατά τον τραυματισμό μετακινείται προς τα πάνω, λόγω της αύξησης της όψιμης έναρξης τραυματικής ή μη-τραυματικής ΚΝΜ, (16,18,19), το οποίο δείχνει ότι μεγαλύτεροι ενήλικες με ΚΝΜ επιστέφουν στην εκπαίδευση ή εκπαιδεύονται για να αναπτύξουν νέες δεξιότητες, ούτως ώστε να μπορούν να εργαστούν σε κάποια δουλειά διαφορετική από αυτή που είχαν πριν τον τραυματισμό. Γνωρίζουμε σχετικά περισσότερα για τα παιδιά με δισχιδή ράχη σε σχέση με τις υπόλοιπες ομάδες, διότι αυτά τα παιδιά έχουν πολύπλοκες μορφωτικές ανάγκες, οι οποίες σχετίζονται με την ποικιλομορφία των σωματικών, πνευματικών και ψυχολογικών προβλημάτων που μπορεί να αντιμετωπίζουν. Δισχιδής ράχη με συνοδό υδροκέφαλο οδηγεί σε περιορισμό των ανώτερων νοητικών λειτουργιών σε τουλάχιστον το ένα τρίτο αυτών των παιδιών, το οποίο περιλαμβάνει διάσπαση προσοχής και δυσκολία συγκέντρωσης (20) που χρειάζεται, όπου είναι δυνατόν, ειδικές εκπαιδευτικές δομές (17,21,22). Πρόσφατες μελέτες έχουν δείξει την παρουσία κατάθλιψης και άγχους σε νεαρούς ενήλικες με δισχιδή ράχη, το οποίο συμβάλει σε κακές επιδόσεις στην εκπαίδευση (23). Παρ' όλες αυτές τις δυσκολίες μια μακροχρόνια μελέτη παιδιών με δισχιδή
Κεφάλαιο 8
Εκπαίδευση και εργασία
ράχη στις ΗΠΑ ανέδειξε ότι τα μισά περίπου παιδιά έφτασαν επιτυχώς στην τριτοβάθμια εκπαίδευση (24). Αυτό υποστηρίζει τα στοιχεία που αναδεικνύουν μια μεγάλη μείωση των παιδιών που παράτησαν το σχολείο στις ΗΠΑ, την περίοδο που αυξήθηκαν οι πόροι που χρησιμοποιήθηκαν για αυτήν την ομάδα παιδιών (25). Για τα περισσότερα παιδιά και νέους ενήλικες με ΚΝΜ, είναι πρόκληση ο σχεδιασμός της επιστροφής του σε μια δευτεροβάθμια ή τριτοβάθμια σχολή. Εκτός από κάποιες έρευνες με μικρά δείγματα στην Ευρώπη και στις Ηνωμένες Πολιτείες (26-29), υπάρχουν λίγες αξιόπιστες πληροφορίες για την γενικότερη επιτυχία ή αποτυχία της επανένταξης των παιδιών με ΚΝΜ στο σχολείο, σε σχέση με τα παιδιά με άλλες αναπηρίες ή των πληθυσμό χωρίς αναπηρίες. Ποιοτικές μελέτες από το Ηνωμένο Βασίλειο αναδεικνύουν πως η επιστροφή στο σχολείο είναι μια τραυματική εμπειρία (30). Η επιστροφή ήταν πιο επιτυχής, όταν γινόταν το δυνατόν συντομότερο, κατά προτίμηση όταν το παιδί βρισκόταν ακόμα σε πρόγραμμα αποκατάστασης στο νοσοκομείο. Όλοι οι μαθητές συμφώνησαν ότι τα κύρια προβλήματα αφορούσαν τη φυσική πρόσβαση και την έλλειψη εκπαίδευσης του προσωπικού για να διευκολύνουν τα παιδιά στο να συμμετέχουν σε όλες τις σχολικές δραστηριότητες, συμπεριλαμβανομένων τα αθλήματα και τις σχολικές εκδρομές. Η μετάβαση στην τριτοβάθμια εκπαίδευση σε πανεπιστήμια και σχολές φαίνεται να αποτελεί μικρότερη πρόκληση, πιθανώς λόγω του ότι οι μαθητές είναι πιο ώριμοι, έχουν περισσότερη εμπειρία με την ΚΝΜ και γνωρίζουν τις ανάγκες τους. Στις Ηνωμένες Πολιτείες για, παράδειγμα, 45% των νέων με κινητική αναπηρία πάνε σε κολέγιο ή σε πανεπιστήμιο μετά τη δευτεροβάθμια, σε σύγκριση με το 53% του γενικού πληθυσμού (31). Μία μελέτη διαπίστωσε ότι το 82 % των συμμετεχόντων πήγε στο κολέγιο (32). Το United States National Longitudinal Transition Study 2 είχε παρόμοια ευρήματα, αλλά έδειξε επίσης μια διαφορά από το 77% των μαθητών, που είναι τυφλοί ή κωφοί συνεχίζουν μετά τη δευτεροβάθμια εκπαίδευση (31). Στην Ευρώπη τα νούμερα είναι συγκρίσιμα, παρότι τα ποσοστά συμμετοχής στα κολέγια από άτομα με κινητικά προβλήματα μειώνονται τα τελευταία χρόνια στην Ευρώπη (33).
Αντιμετωπίζοντας φραγμούς στην εκπαίδευση Για να κατανοήσουμε και να διευθετήσουμε τα μυριάδες εμπόδια που αντιμετωπίζουν στην εκπαίδευση τα παιδιά και οι ενήλικες με ΚΝΜ, είναι σημαντικό να ξεκινήσουμε διαχωρίζοντας τρεις ομάδες: παιδιά με δισχιδή ράχη, παιδιά που επιστρέφουν στην εκπαίδευση μετά την αποκατάσταση τους, ενήλικες που εκπαιδεύονται σε νέες δεξιότητες και γνώσεις, για να αποκτήσουν νέες προοπτικές εργασίας μετά την ΚΝΜ.
Νομοθεσία και πολιτικές Το άρθρο 24 του CRPD ξεκάθαρες και λεπτομερείς οδηγίες στο τι χρειάζεται σε επίπεδο νομοθεσίας, πολιτικής και σχεδιασμού, ούτως ώστε να εξασφαλίζεται το δικαίωμα συμμετοχής σε όλα τα επίπεδα μόρφωσης για όλα τα άτομα με αναπηρία (1,12). Κάποιες χώρες με υψηλό μέσο εισόδημα έχουν θεσμοθετήσει νομοθεσίες και πολιτικές για να εξασφαλίζουν την εφαρμογή των αρχών της εκπαιδευτικής ένταξης, συμπεριλαμβανομένων γενικών διατάξεων κατά των διακρίσεων, όπως το νομοσχέδιο για τις διακρίσεις κατά των αναπήρων (Disability Discrimination Act) στο Ηνωμένο Βασίλειο, για να απευθυνθούν σε ατομικές καταγγελίες εκπαιδευτικού αποκλεισμού. Ωστόσο οι νομοθεσίες είναι πιο αποτελεσματικές αν λειτουργούν προληπτικά. Στη Δανία, για παράδειγμα, η νομοθεσία υποχρεώνει το Υπουργείο Παιδείας να παρέχει επιδόματα, τα οποία χρειάζονται τα άτομα με αναπηρία για να μπορούν να παρακολουθούν τα ίδια εκπαιδευτικά προγράμματα με τους συμμαθητές τους, ούτως ώστε να εξασφαλίζουν την ακαδημαϊκή τους επιτυχία. Στην Γαλλία τα σχολεία υποχρεούνται να λαμβάνουν μέτρα για τους μαθητές με αναπηρία και να προσαρμόζουν τις ακαδημαϊκές οδούς και φυσικά και παιδαγωγικά (33). Σε χώρες με χαμηλό και μέσο εισόδημα υπάρχουν συχνά νομοθετικοί φραγμοί, συμπεριλαμβανομένων και νόμων, που επιτρέπουν ρητά τα παιδιά με αναπηρία να αποκλείονται από την εκπαίδευση (34-36). Η UNESCO έχει συμπεράνει ότι το μεγαλύτερο εμπόδιο σε μια εκπαίδευση χωρίς αποκλεισμούς, είναι η αποτυχία θεσμοθέτησης και εφαρμογής νομοθετικού και
183
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
πολιτικού πλαισίου, που να υποστηρίζει την εκπαίδευση χωρίς αποκλεισμούς (37). Ακόμη και σε χώρες όπως η Νότιος Αφρική, όπου η κυβέρνηση έχει αναλάβει ηγετικό ρόλο στην αναγνώριση των εμποδίων στην εκπαίδευση χωρίς αποκλεισμούς, λόγω έλλειψης νομοθεσίας και χρηματοδότησης έχει σημειωθεί μικρή πρόοδος (38). Οι γενικευμένες προσεγγίσεις που δεν λαμβάνουν υπόψη τις τοπικές συνθήκες σε αγροτικές κοινωνίες έχουν μικρότερες πιθανότητες επιτυχίας (39). Οι χώρες πρέπει να κάνουν πρακτικά βήματα για να προετοιμάσουν το έδαφος για μια εφαρμόσιμη εκπαιδευτική πολιτική, καθώς και να κάνουν μια γενικότερη δέσμευση στο σεβασμό του δικαιώματος των παιδιών με αναπηρία να εκπαιδευτούν. Αυτά τα βήματα περιλαμβάνουν: την ανεύρεση του αριθμού των παιδιών με αναπηρία και τις ανάγκες τους, την ανάπτυξη στρατηγικών για να κάνουν τα σχολικά κτίρια πιο προσβάσιμα, την αναθεώρηση του σχολικού προγράμματος, των διδακτικών μεθόδων και υλικών για να ικανοποιήσουν αυτές τις ανάγκες, και να αναπτύξουν την εκπαιδευτική ικανότητα παρέχοντας εκπαιδευμένους παιδαγωγούς για να καλύψουν τις ανάγκες των παιδιών με αναπηρία, αλλά και να χρησιμοποιήσουν τις γνώσεις των γονιών και των κοινοτήτων αυτών των παιδιών. Όλα αυτά τα μέτρα πρέπει να υποστηρίζονται από κατάλληλη και επαρκή χρηματοδότηση.
παρόμοια με αυτά του γενικού πληθυσμού (24, 40). Χρειάζεται περισσότερη έρευνα στο πώς να παρέχουμε ένα περιβάλλον υποστηρικτικό για τα παιδιά με δισχιδή ράχη. Επίσης χρειάζεται προσπάθεια για να αποκτήσουν αυτά τα παιδιά αυτοπεποίθηση και ανεξαρτησία (41). Μια μελέτη μικρής κλίμακας για την ενσωμάτωση της αυτοδιαχείρισης, της ανάπτυξης στόχων και άλλων δεξιοτήτων ανεξαρτησίας σε ένα εβδομαδιαίο σχολείο (camp), έδειξε ότι η προσπάθεια να υπερνικήσουν την έλλειψη αυτοπεποίθησης ήταν ιδιαίτερα επιτυχής. Τα περισσότερα παιδιά με δισχιδή ράχη μπορούν να συμμετέχουν σε κανονικά σχολεία και να επιτύχουν καλά εκπαιδευτικά αποτελέσματα. Έτσι χρειάζεται μια συντονισμένη προσπάθεια, που να συμπεριλαμβάνει τη βοήθεια των παιδαγωγών, των διοικητικών του σχολείου αλλά και των γονέων στο να προωθήσουν αυτά τα παιδιά να αποκτήσουν εγγενή κίνητρα και ανεξαρτησία, σαν βάση για να κτίσουν θετικές κοινωνικές σχέσεις στα κανονικά σχολεία (43, 44). Παρά το ότι οι συνθήκες για τα παιδιά με δισχιδή ράχη στα πιο φτωχά μέρη του κόσμου είναι πολύ δύσκολες, έχει σημειωθεί πρόοδος στην Ανατολική Αφρική φέρνοντας κοντά κοινωνική μέριμνα και γονείς με έναν πολιτισμικά ευαίσθητο τρόπο (45).
Η επιστροφή στο σχολείο μετά τον τραυματισμό Η επιστροφή στο σχολείο το δυνατό συντομότερο μετά από τον τραυματισμό πρέπει να είναι ο πρωταρχικός στόχος της αποκατάστασης, και η δέσμευση για την συνέχιση της εκπαίδευσης πρέπει να είναι μέρος της θέσης στόχων της αποκατάστασης (26, 32, 46, 47). Η μόρφωση έχει βρεθεί με συνέπεια να σχετίζεται με αυξημένη κοινωνική συμμετοχή, την εργασία, υψηλότερα επίπεδα ανεξαρτησίας και υψηλότερη ικανοποίηση από τη ζωή στα άτομα, που υπέστησαν ΚΝΜ στα χρόνια της πρωτοβάθμιας ή της δευτεροβάθμιας εκπαίδευσης (48, 49). Η καλύτερη επιλογή για οποιοδήποτε παιδί είναι να πάει σε κανονικό σχολείο. Η κατ’ οίκον εκπαίδευση ή τα ιδιαίτερα μαθήματα μόνα τους ή ταυτόχρονα με το σχολείο είναι η δεύτερη καλύτερη επιλογή και πρέπει να λαμβάνονται υπόψη μόνο εάν το παιδί χρειάζεται περισσότερη εκπαιδευτική υποστήριξη ή εάν χάνει πολλά μαθήματα, λόγω του ότι πρέπει να φεύγει από την τάξη για να κάνει ερ-
Υποστήριξη παιδιών με δισχιδή ράχη Περίπου τα μισά από τα παιδιά και τους νέους ενήλικες με μυελομηνιγκοκήλη συνοδευόμενη από υδροκέφαλο τοποθετούνται σε ειδικά εκπαιδευτικά προγράμματα και έχουν πτωχά εκπαιδευτικά αποτελέσματα, ενώ τα υπόλοιπα έχουν αποτελέσματα παρόμοια με αυτά των παιδιών χωρίς αναπηρίες (17). Η πρόκληση είναι να δημιουργηθούν συνθήκες μέσα στα κανονικά σχολεία, οι οποίες να βελτιστοποιούν τη μάθηση για όλα τα παιδιά με δισχιδή ράχη. Παρά τις ιατρικές επιπλοκές που παρουσιάζουν τα παιδιά με δισχιδή ράχη- όπως επιληπτικές κρίσεις, ακράτεια ούρων και κοπράνων-σε καλά προετοιμασμένο και με επαρκείς πόρους εκπαιδευτικό περιβάλλον, αυτοί οι μαθητές μπορούν να έχουν πρόσβαση στην πρωτοβάθμια και δευτεροβάθμια εκπαίδευση και παρουσιάζουν ποσοστά αποφοίτησης 184
Κεφάλαιο 8
Εκπαίδευση και εργασία
γοθεραπείες και φυσικοθεραπείες (29). Μια πρόσφατη μελέτη της σχολικής εμπειρίας παιδιών με ΚΝΜ στο Λονδίνο (30) ανέδειξε τους παρακάτω παράγοντες κλειδιά για την επιτυχία: ■ έγκαιρη επαφή μεταξύ παιδιού, γονέων και προσωπικού του σχολείου με επαγγελματίες αποκατάστασης ■ τροποποιήσεις και προσαρμογές, που γίνονται πριν την επιστροφή του μαθητή, με τρόπο που δεν στιγματίζει, για να έχει πρόσβαση σε όλες της περιοχές του σχολείου ■ πρόγραμμα πλήρης πρόσβασης, με το οποίο η διοίκηση του σχολείου εξασφαλίζει ότι ο μαθητής συμμετέχει σε όλες τις σχολικές δραστηριότητες, συμπεριλαμβανομένων και ειδικά μαθήματα φυσικής αγωγής (50) και σχολικές εκδρομές ■ ενημέρωση πάνω στην κάκωση νωτιαίου μυελού και συνοδών καταστάσεων στο σχολείο για όλο το προσωπικό, καθώς και κατάλληλη ηλικιακά ενημέρωση για τους συμμαθητές του, τα οποία να ενθαρρύνουν την αποδοχή της διαφορετικότητας. Αυτή και παρόμοιες μελέτες (29, 32, 51) έχουν επιβεβαιώσει ότι χρειάζεται να τεθούν σε λειτουργία μηχανισμοί που να εγείρουν ανησυχίες και να διαχειριστούν προβλήματα μαθητές και γονείς σε ανεπίσημο περιβάλλον (π.χ. κάποια απογευματινή κοινωνική εκδήλωση), πολύ πριν την επιστροφή του μαθητή στο σχολείο. Σε αυτές τις εκδηλώσεις πρέπει να παρευρίσκονται και επαγγελματίες αποκατάστασης, εφόσον τα στοιχεία υποδηλώνουν ότι η ενθάρρυνση τους στο παιδί είναι ένας σημαντικός παράγοντας για την επιτυχή επανένταξη στο σχολείο και τη συμμετοχή του στα σχολικά δρώμενα (52, 53). Η ομότιμη στήριξη επίσης έχει φανεί να είναι ένας καλός τρόπος για να δοθεί κίνητρο σε νέους ενήλικες να συνεχίσουν ή να επιστρέψουν στο σχολείο μετά από μια κάκωση (54). Η υπερπροστατευτικότητα πρέπει να αποθαρρύνεται (30).
με πολλαπλές πηγές υποστήριξης προσαρμόζονται καλύτερα στη μετάβαση από αυτά χωρίς (25). Η διαθεσιμότητας κατάλληλης βοηθητικής τεχνολογίας είναι επίσης βασική για μια ομαλή μετάβαση. Οι γονείς μπορούν να παίξουν μεγάλο ρόλο δίνοντας κίνητρα και χτίζοντας αυτοπεποίθηση κατά τη μετάβαση. Η ομότιμη στήριξη για την αντιμετώπιση της τραυματικής εμπειρίας της μετάβασης σε παιδιά με ΚΝΜ (54), αλλά και πηγές του διαδικτύου, πουγονείς και παιδί μπορούν να χρησιμοποιήσουν μαζί για να ενισχύσουν την αυτοπεποίθηση (41) είναι πολλά υποσχόμενες εξελίξεις για την συναισθηματική και ψυχολογική προετοιμασία. Στον απολογισμό του, του 2004 το Εθνικό Κέντρο Δευτεροβάθμιας Εκπαίδευσης των Ηνωμένων Πολιτειών (United States National Center on Secondary Education and Transitions-NCSET) υπογράμμισε κάποιες πιθανές λύσεις στις μεγάλες προκλήσεις της μετάβασης και συγκεκριμένα: ■ προώθηση της αυτό-διάθεσης και αυτό-υπεράσπισης των φοιτητών ενσωματώνοντας επαγγελματικές δεξιότητες στο γενικό πρόγραμμα εκπαίδευσης ■ διασφάλιση ότι οι φοιτητές έχουν πρόσβαση στο γενικό εκπαιδευτικό πρόγραμμα με τη χρήση αρχών ενός γενικού σχεδιασμού που κάνουν προσβάσιμα τις τάξεις, τα εργαστήρια και τις εξετάσεις στους δυνατό περισσότερους φοιτητές, χωρίς την ανάγκη προσαρμογών ή τροποποιήσεων ■ αύξηση της αποφοίτησης των ατόμων με αναπηρία αναπτύσσοντας μεθόδους και διαδικασίες αναγνώρισης και καταγραφής στοιχείων που βασίζονται σε έρευνες για την αποτροπή της παύσης της φοίτησης και για παρέμβαση ■ αύξηση της καλά ενημερωμένης γονικής συμμετοχής και εμπλοκής στον προγραμματισμό των σπουδών και στη λήψη αποφάσεων ■ χρήση μεθόδων όπως η αλληλοεκπαίδευση γενικών παιδαγωγών και ειδικευμένων παιδαγωγών, για την προώθηση της συνεργασίας μεταξύ τους στην εκτίμηση των φοιτητών, στην δημιουγία εξατομικευμένων εκπαιδευτικών πλάνων και στην καθοδήγηση. Μια αναφορά του OECD πάνω στα θέματα της μετάβασης στα πανεπιστήμια και στα κολέγια δηλώνει ότι για να γεφυρωθεί το χάσμα μεταξύ δευτεροβάθμιας και τριτοβάθμιας εκπαίδευσης χρειάζεται προσπάθειες συνεργασίας και από τα δύο επίπεδα εκπαίδευσης (33): 185
Μετάβαση από το σχολείο Για τα παιδιά με αναπηρία η μετάβαση από το σχολείο στην τριτοβάθμια εκπαίδευση είναι πιο στρεσογόνος από ότι στα υπόλοιπα παιδιά, λόγω της ανάγκης προσαρμογής σε νέες συνθήκες και καταστάσεις. Τα άτομα
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
■ Τα δευτεροβάθμια σχολεία πρέπει να παρέχουν συμβουλευτική και άλλους πόρους, που έχουν αποδειχτεί ιδιαίτερα αποτελεσματικοί (57). ■ Τα κολέγια και τα πανεπιστήμια πρέπει να αναθεωρήσουν της στρατηγικές εισαγωγής τους καθώς και τις κτιριακές τους υποδομές, για διασφαλίζουν την πρόσβαση και την επιτυχία των φοιτητών με αναπηρίες. Η μετάβαση πρέπει να συντονίζεται και κεντρικά από υπηρεσίες υποστήριξης των αναπήρων για όλο το πανεπιστήμιο και στο εκάστοτε τμήμα του πανεπιστημίου. Εκ των προτέρων πρέπει να τεθεί σε εφαρμογή σχεδιασμός για τροποποιήσεις. Σχετικές τροποποιήσεις συμπεριλαμβάνουν τρόπος καταγραφής σημειώσεων, φροντιστήρια, τεχνολογικά βοηθήματα, φυσικές προσαρμογές των τάξεων και υποστήριξη για ανεξάρτητη ζωή (31, 58, 59). Όσον αφορά τις χώρες με χαμηλά και μεσαία εισοδήματα, η Εταιρεία για την Έρευνα στην Πρόσβαση στην Εκπαίδευση, τις Μεταβάσεις και την Ισότητα (Consortium for Research on Educational Access, Transitions and Equity-CREATE), δημιουργήθηκε το 2006 για τη συνεργασία μεταξύ ερευνητικών κέντρων στο Μπαγκλαντές, στην Γκάνα, στην Ινδία, στην Νότιο Αφρική και στο Ηνωμένο Βασίλειο. Η πρώτη μονογραφή του CREATE έθεσε μια ερευνητική διάταξη βασισμένη στην κατηγοριοποίηση των "ζωνών αποκλεισμού" για παιδιά με αναπηρίες- από ολικό αποκλεισμό έως και είσοδο στη δευτεροβάθμια εκπαίδευση αλλά με μεγάλο κίνδυνο να τα παρατήσουν πριν αποφοιτήσουν- και υποστήριξε τις εκπαιδευτικές πολιτικές οι οποίες απευθύνονταν σε αυτά τα προβλήματα (60). Μια επαναληπτική μονογραφή ανέδειξε τις συγκεκριμένες διδακτικές προκλήσεις και τη στρατηγική αντιμετώπιση αυτών σε όλη την Αφρική (14), και πως οι διακρίσεις λόγω φύλου επιπλέκουν τις προκλήσεις που αντιμετωπίζουν τα παιδιά με ΚΝΜ.
σβαση είναι δύσκολη, διότι τα περισσότερα σχολεία είναι ανυψωμένα πάνω σε πλίνθους για να τα προστατέψουν από τις πλημύρες κατά την περίοδο των βροχών, και, μέσα στα σχολεία, οι τουαλέτες δεν είναι προσβάσιμες και οι πόρτες σπανίως είναι αρκετά φαρδιές για να περάσουν τα αναπηρικά αμαξίδια (63). Στο Ηνωμένο Βασίλειο μια μελέτη ανέδειξε ότι οι φραγμοί όπως τα σκαλιά, οι απότομες ράμπες, η έλλειψη κατάλληλων τουαλετών, και καταλλήλων θέσεων στάθμευσης αποτελούσαν εμπόδια τα οποία απέτρεπαν τους μαθητές με αμαξίδια να έχουν πρόσβαση στις αίθουσες διδασκαλίας, στη βιβλιοθήκη, στην τραπεζαρία και στους χώρους αθλοπαιδιών (30). Οι παρακάμψεις και οι καθυστερήσεις για να έχουν πρόσβαση επιβαρύνουν την άφιξη του μαθητή στην ώρα του (64). Μη προσβάσιμα μέσα μαζικών μεταφορών είναι ιδιαίτερα επιβαρυντικό για μαθητές με κινητικές δυσκολίες τα οποία δεν μπορούν να πάνε στο σχολείο από μόνα τους, λόγω μεγάλων αποστάσεων, ή άνισων αγροτικών δρόμων, ή λόγω πλημμυρισμένων δρόμων κατά την περίοδο των βροχών (61). Πολλά από αυτά τα εμπόδια μπορούν να υπερνικηθούν με καλύτερες πολιτικές και καλύτερο σχεδιασμό (33, 65, 66). Ακόμα και εκεί που οι διαθέσιμοι πόροι είναι περιορισμένοι, μπορούμε να κάνουμε διαφορά ιεραρχώντας την απομάκρυνση των εμποδίων σε διάστημα χρόνου, όπως στην Κένυα , όπου η κυβέρνηση σχεδιάζει ως το 2015 την έναρξη τοποθέτησης ραμπών και άλλων προσαρμογων στα σχολεία τους (67). Το 2003, η πόλη της Λισαβόνας στην Πορτογαλία, ξεκίνησε ένα πρόγραμμα το "Escola Aberta" ("ανοικτό σχολείο"), το οποίο συμπεριλάμβανε ευρείες στρατηγικές για την εξουδετέρωση των φυσικών φραγμών στα δημοτικά σχολεία (68).
Εύλογες προσαρμογες Παρότι οι ανάγκες διαφέρουν σημαντικά, κάποια παιδιά με ΚΝΜ μπορούν να αποκτήσουν το επίπεδο ανεξαρτησίας, που είναι απαραίτητο για να παρακολουθήσουν το σχολείο και να λάβουν τα πλήρη οφέλη μιας μόρφωσης, μόνο με κάποιες προσαρμογές. Αυτές μπορεί να είναι κάποιος βοηθός μέσα στην τάξη, να παίρνουν τη μορφή τεχνολογικών βοηθημάτων, τα οποία μπορεί να κυμαίνονται από απλές λαβές για μο-
Μειώνοντας τους φυσικούς φραγμούς Έρευνες έχουν δείξει ότι οι φραγμοί στις βασικές μετακινήσεις είναι βασικοί παράγοντες στον περιορισμό της συμμετοχής των μαθητών με παραπληγία στην Νότιο Αφρική (61) και δισχιδή ράχη στην Μαλαισία (62). Στην Ηνωμένη Δημοκρατία της Τανζανίας η πρό186
Κεφάλαιο 8
Εκπαίδευση και εργασία
λύβια έως και συστήματα οπτικής αναγνώρισης χαρακτήρων ή ακόμα και τελευταίας γενιάς ρομποτικό χέρι σε παιδιά με κινητικά ελλείμματα στα άνω άκρα (69). Όλα αυτά μπορούν να ενισχύσουν την απόδοση ή ακόμα και να κάνουν εφικτή την παρακολούθηση των μαθημάτων και τη συμμετοχή στην τάξη. Η καλύτερη πηγή πληροφοριών για το τι βοηθάει πραγματικά, είναι η εμπειρία ανθρώπων που χρησιμοποιούν τέτοια βοηθήματα. Στον Καναδά ένα πρόγραμμα βοηθάει με κανόνες για την επικοινωνία με ομοίους, ούτως ώστε να ανταλλάσσονται πληροφορίες σε διάφορες λύσεις τεχνολογικών βοηθημάτων (70) αλλά και να προσφέρει λύσεις σε άτομα με πρόσφατη αναπηρία. Παρότι οι υπολογιστές και άλλα βοηθήματα θα εξυπηρετήσουν πολύ ένα παιδί με ΚΝΜ, χρειάζονται καλά εκπαιδευμένοι δάσκαλοι ή βοηθοί οι οποίοι θα βοηθήσουν το παιδί να τα χρησιμοποιήσει (29, 71).
Χρηματοδοτώντας την εκπαίδευση και τις προσαρμογές Οι προσαρμογές, είτε ως εξοπλισμός είτε ως υποστηρικτικό προσωπικό, χρειάζονται ασφαλή χρηματοδότηση. Στις χώρες με υψηλό μέσο εισόδημα, υπάρχουν πολλές πηγές χρηματοδότησης για τους μαθητές με αναπηρίες, π.χ. κυβερνητικές εκπαιδευτικές επιδοτήσεις ή δανειοδοτήσεις, πολιτειακές υποτροφίες και συμπληρωματικές επιδοτήσεις, πανεπιστημιακές υποτροφίες, ιδιωτικές εκπαιδευτικές χρηματοδοτήσεις και υποτροφίες, και ιδιωτική ασφάλιση (33). Στις Η.Π.Α., το 78% του προϋπολογισμού για την υποστήριξη των αναπήρων στην τριτοβάθμια εκπαίδευση πήγε στην χρηματοδότηση φοιτητικών δανείων για ανθρώπους με αναπηρία (33), και υπάρχει ποικιλία κυβερνητικών προγραμμάτων από τα οποία μπορεί να χρηματοδοτηθεί εκπαιδευτική υποστηρικτική τεχνολογία (72). Στο Ηνωμένο Βασίλειο, το Επίδομα Αναπήρων Φοιτητών (Disabled Students Allowance) παρέχει άμεσες αφορολόγητες πληρωμές για εξειδικευμένο εκπαιδευτικό εξοπλισμό, προσωπικούς βοηθούς και επιπλέον μεταφορικά έξοδα (73). Στην Ιρλανδία κυβερνητικά κονδύλια μοιράζονται σε κολέγια και πανεπιστήμια, τα οποία είναι υπεύθυνα για τη διάθεση τους στους φοιτητές (74). Μια άλλη προσέγγιση είναι, η εξασφάλιση του ότι τα επιπλέον έξοδα του μαθητή με ΚΝΜ, να αντισταθμίζονται με προσωπικά δάνεια ή με μερικές υπο-
τροφίες τα οποία δίνονται ανά περίπτωση, όπως στη Γαλλία και στη Νορβηγία με διατάξεις για αυτά τα δάνεια, ούτως ώστε σε περίπτωση ανικανότητας πληρωμής μετά την αποφοίτηση του φοιτητή να μετατρέπονται σε δωρεές (33). Στις χώρες με χαμηλό μέσο εισόδημα, εξειδικευμένοι χρηματοδοτικοί διακανονισμοί είναι απίθανο να υπάρχουν για τους φοιτητές με αναπηρία. Παρότι, μελέτες έχουν δείξει ότι η ενσωμάτωση των παιδιών με αναπηρία σε κανονικά σχολεία είναι πιο αποδοτικό οικονομικά, ακόμη και όταν λάβουμε υπόψη το επιπλέον κόστος των προσαρμογών (βλέπε τις αναφορές στις μελέτες (75), πολλές χώρες δεν είναι σε θέση να εκμεταλλευτούν αυτήν την πιθανή εξοικονόμηση χρημάτων. Κατά γενικό κανόνα, οι χώρες με χαμηλό μέσο εισόδημα, έχουν τουλάχιστον το πλεονέκτημα του να μπορούν να δουν, το πώς έχουν αποδώσει ή αποτύχει οι διάφορες χρηματοδοτικές στρατηγικές των χωρών με υψηλό μέσο εισόδημα (76). Η Ουγκάντα, για παράδειγμα, ένωσε κομμάτια από διάφορες προσεγγίσεις για τη χρηματοδότηση της εκπαίδευσης χωρίς αποκλεισμούς από την Ευρώπη και τις Η.Π.Α., παράγοντας ένα καλό αποτέλεσμα για τα ανάπηρα παιδία της (37). Παρόλα αυτά η υιοθέτηση χρηματοδοτικών προσεγγίσεων χωρών με υψηλό μέσο εισόδημα δεν είναι πάντα η καλύτερη προσέγγιση, καθώς ο πρωταρχικός στόχος της εκπαίδευσης σε μια αγροτική κοινωνία είναι η προετοιμασία του ατόμου με αναπηρίες, για να ζήσει και να εργαστεί μέσα σε αυτή, το οποίο σημαίνει οι καλύτερες χρηματοδοτικές ρυθμίσεις είναι άμεσα συνδεδεμένες με τις ανάγκες αυτής της κοινωνίας (39).
Κοινωνική Υποστήριξη Για κάθε νέο άτομο στη δευτεροβάθμια ή την τριτοβάθμια εκπαίδευση, η ανεξαρτησία συνήθως εξαρτάται από την παρουσία ενός δικτύου κοινωνικής υποστήριξης από την οικογένεια, τους φίλους και τους ομοίους του. Η διαταραχή που προκαλείται από μια ΚΝΜ μπορεί να σημαίνει ότι ένας νέος άνθρωπος χάνει την επαφή με τους φίλους του και ο χρόνος μακριά από το σχολείο μπορεί να οδηγήσει σε μια γενική απομόνωση από την κοινωνία. Η κοινωνική υποστήριξη παίζει καθοριστικό ρόλο στην ποιότητα ζωής, στην υγεία ακόμα και στην θνησιμότητα των ανθρώπων με ΚΝΜ (77). Ανεπίσημα συστήματα καθοδήγησης έχουν δείξει ότι 187
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
είναι βοηθητικά κατά την επιστροφή των παιδιών με ΚΝΜ στο σχολείο και στην κοινωνική ζωή (54, 59), και η αλληλεπίδραση με ομοίους με ΚΝΜ έχει αποδειχτεί ιδιαίτερα σημαντική (78). Οι ομάδες υπεράσπισης των δικαιωμάτων, οι ομάδες υποστήριξης και οι Μ.Κ.Ο., είναι ζωτικά συστατικά ενός κοινωνικού δικτύου, το οποίο μπορεί μοιράζοντας κοινές εμπειρίες, να διαδραματίσει σημαντικό ρόλο στο να βοηθήσει τους μαθητές και τις οικογένειες τους. Στο Ηνωμένο Βασίλειο, το Back Up Trust λειτουργεί μια υπηρεσία καθοδήγησης για άτομα με ΚΝΜ, και ταιριάζει μέντορες με άτομα που χρειάζονται καθοδήγηση, στο πώς να προσαρμοστούν στη ζωή με ΚΝΜ, την επιστροφή στο σχολείο και άλλα θέματα (79). Ένα παρόμοιο ρόλο διαδραματίζουν και άλλες ομάδες σε άλλες χώρες, συμπεριλαμβανομένων και ορισμένων που έχουν περιορισμένους πόρους για να δαπανήσουν για οποιαδήποτε πτυχή της ζωή με αναπηρία. Το National Resource Center for Inclusion της Ινδίας, το οποίο είναι μέλος του Able Disabled All People Together (ADAPT), εδρεύει στην Βομβάη και από εκεί παρέχει υποστήριξη και καθοδήγηση σε παιδιά με αναπηρία από το 1972.
Αντιμετώπιση των φραγμών στη συμπεριφορά Τα εμπόδια που αντιμετωπίζουν τα παιδιά και οι νέοι ενήλικες, όταν επιστρέφουν στο σχολείο μετά την αποκατάσταση τους, ή όταν μπαίνουν στο σχολείο για πρώτη φορά παιδιά με δισχιδή ράχη ή παιδιατρική ΚΝΜ, δεν είναι μόνο θεσμικά και φυσικά, αλλά και συμπεριφοράς. Η επιτυχής εκπαιδευτική συμμετοχή προϋποθέτει ότι η άγνοια και οι παρεξηγήσεις για το τι σημαίνει ΚΝΜ πρέπει να διαλυθούν. Τα παιδιά και οι νέοι ενήλικες με ΚΝΜ, και οι οικογένειες τους , πρέπει επίσης να μάθουν για την ΚΝΜ και για το τι να περιμένουν κατά την επιστροφή στο σχολείο ή την μετάβαση από δευτεροβάθμια σε τριτοβάθμια εκπαίδευση.
νουν αποδεκτά από τους συμμαθητές τους, και υπάρχουν κάποια στοιχεία που δείχνουν ότι τα παιδιά μπορεί να δυσκολευτούν να αντιμετωπίσουν την ΚΝΜ και μπορεί να παρουσιάσουν συμπτώματα μη προσαρμογής, άγχους και κατάθλιψης (23, 80) ή ακόμη και την αίσθηση απώλειας ελέγχου (81). Εάν δεν αντιμετωπιστεί, αυτό μπορεί να οδηγήσει σε απομόνωση, μοναξιά, απουσία φίλων, άγχος για το μέλλον και ως εκ τούτου κακή απόδοση στο σχολείο (27). Τα παιδιά με ΚΝΜ επιστρέφοντας στο σχολείο, πρέπει να γνωρίζουν τα χαρακτηριστικά του σχολείου που μπαίνουν, και τις συνήθεις δραστηριότητες στις οποίες θα συμμετέχουν- π.χ. πράγματα που είναι σημαντικά για αυτά και όχι αυτά που είναι σημαντικά για τους γονείς ή τους δασκάλους (51). Αυτό σημαίνει ότι οι πληροφορίες από τα παιδιά με ΚΝΜ για το τι χρειάζεται να μάθουν είναι πιο σημαντικές από αυτά που οι γονείς, οι δάσκαλοι και άλλοι επαγγελματίες, πιστεύουν ότι οφείλουν να γνωρίζουν. Αργότερα στην μαθητική τους ζωή, μαθητές με ΚΝΜ, όπως και οι συμμαθητές τους, χρειάζονται συμβουλευτική και επαγγελματικό προσανατολισμό, που θα τους διευκολύνει στη μετάβαση τους στην τριτοβάθμια εκπαίδευση και από εκεί στην εργασία (53). Παιδιά με ΚΝΜ και οι οικογένειες τους μπορούν να κερδίσουν από πληροφορίες στο διαδίκτυο που παρέχουν βασικές ιατρικές γνώσεις για τις ΚΝΜ και τη δισχιδή ράχη, συμπεριλαμβανομένων και πρακτικές πληροφορίες για την αυτό-διαχείριση (41). Ομάδες υποστήριξης για την ΚΝΜ υπάρχουν σε πολλές χώρες και μοιράζονται πληροφορίες και κοινές ανησυχίες που είναι σημαντικές για τις οικογένειες τους. Οι γονείς είναι ανησυχούν δικαιολογημένα για ασφάλεια του παιδιού τους στο σχολείο και για το εάν το παιδί τους θα γίνει κοινωνικά αποδεκτό από τους συμμαθητές του (27), αλλά, εφόσον η υπερπροστασία μπορεί να προάγει την απομόνωση του παιδιού με ΚΝΜ (26), πρέπει να συμβουλεύονται από τους επαγγελματίες αποκατάστασης και τους δασκάλους να βρίσκουν ομάδες υποστήριξης για να καθησυχάζουν τις φοβίες τους.
Μαθητές με κάκωση νωτιαίου μυελού και οι οικογένειες τους Όταν σκέφτονται την επιστροφή τους στο σχολείο, τα παιδιά με ΚΝΜ μπορεί να ανησυχήσουν ότι δεν θα γί188
Εκπαιδευτικοί, διοίκηση και συμμαθητές Η συμπεριφορά των διευθυντών και των δασκάλων είναι ζωτική σημασίας στην δημιουργία και τη διαχείριση ενός περιβάλλοντος χωρίς αποκλεισμούς, και οι
Κεφάλαιο 8
Εκπαίδευση και εργασία
συμπεριφορές μπορούν να επηρεαστούν θετικά από καλά σχεδιασμένες στρατηγικές πληροφόρησης και υποστήριξης (39, 50, 61, 82). Οι δάσκαλοι αντιμετωπίζουν πιο θετικά τους μαθητές με κινητικά προβλήματα από ότι από αυτούς με νοητική υστέρηση (83). Ο προγραμματισμός μιας βασικής "ευαισθητοποίησης σε θέματα αναπηρίας" για δασκάλους, διοικητικό προσωπικό και μαθητές έχει βρεθεί σε βιβλιογραφική ανασκόπηση να είναι εξίσου σημαντικό με ένα προσαρμοσμένο περιβάλλον (84). Αυτό έχει επιβεβαιωθεί στη Μποτσουάνα και στο Λίβανο (85, 86). Για παράδειγμα, το Κέντρο για Υποστηρικτικές Τεχνολογίες και Περιβαλλοντολογική Πρόσβαση του κολλεγίου αρχιτεκτονικής στην Georgia των Η.Π.Α., διαθέτει δωρεάν διαδικτυακά μαθήματα σε καθηγητές μαθηματικών και φυσικής γυμνασίου, ούτως ώστε να μάθουν για τις προσαρμογές της τάξης, τις υποστηρικτικές τεχνολογίες, τροποποιημένα τεστ και εργαστήρια καθώς και τους νόμους και τις πολιτικές (70). Έχοντας έλλειψη αντίληψης του τι συνεπάγεται με μια ΚΝΜ και στο πώς να είναι υποστηρικτικοί, μαθητές και καθηγητές θα κέρδιζαν από την έκθεση σε βασικές πληροφορίες γενικά για την αναπηρία και συγκεκριμένα για την ΚΝΜ. Υπάρχουν εύκολα προσβάσιμες πηγές, που μπορούν χρησιμοποιηθούν, και για γενικές πληροφορίες για την αναπηρία στις σχολικές τάξεις και για τα προβλήματα της ΚΝΜ ειδικά. Για παράδειγμα, η UNESCO έχει φτιάξει μια εργαλειοθήκη για τη δημιουργία περιβάλλοντος φιλικό προς τη μάθηση χωρίς αποκλεισμούς (87), ενώ ο OECD προσφέρει πηγές για τα βήματα που πρέπει να κάνουν δάσκαλοι, διοίκηση και μαθητές για να υποστηρίξουν τη διαφορετικότητα στο περιβάλλον του σχολείου (88). Οι καθηγητές παίζουν άμεσο και καθοριστικό ρόλο στο να γίνει η εκπαίδευση χωρίς αποκλεισμούς πραγματικότητα. Αυτό ισχύει ιδιαιτέρως για τους καθηγητές φυσικής αγωγής, οι οποίοι αντιμετωπίζουν την πρόκληση του να ενσωματώσουν ένα παιδί με σημαντικές φυσικές δυσκολίες σε ένα πρόγραμμα φυσικής αγωγής γενικής κατεύθυνσης, με ένα τρόπο που να εξισορροπεί τον στόχο της ενσωμάτωσης, φυσικές δραστηριότητες που να είναι κατάλληλες για τους λειτουργικούς περιορισμούς, και να σέβεται και τους κανόνες ασφαλείας. Μια Σουηδική μελέτη έδειξε ότι η επιτυχία στην αντιμετώπιση αυτής της πρόκλησης έχει σχέση με την
επαρκή εκπαίδευση, την υποστήριξη από τη διοίκηση και επαρκών μέσων (50). Υπάρχει πλέον μια αυξανόμενη γενική παραδοχή, ότι τα ινστιτούτα εκπαίδευσης καθηγητών πρέπει να εξασφαλίζουν ότι οι νέοι καθηγητές πρέπει να μπορούν να διδάξουν αποτελεσματικά σε τάξεις που υπάρχουν μαθητές με αναπηρία (89). Υπάρχουν αποδείξεις ότι οι εκπαιδευτικοί αφομοιώνουν πληροφορίες για την αναπηρία ενός παιδιού και τις χρησιμοποιούν καλύτερα για την ενσωμάτωση του παιδιού στις σχολικές δραστηριότητες, όταν οι πληροφορίες δεν παρουσιάζονται με τη μορφή διαγνώσεωνπ.χ. παιδί με δισχιδή ράχη, αλλά με τη μορφή λειτουργικών προβλημάτων και μέσων που θα κάνουν πρακτική διαφορά στο πως να διδάξουν το παιδί (83). Γενικά, δεν είναι βασικές ιατρικές γνώσεις περί ΚΝΜ που χρειάζονται, εκτός από προβλήματα υγείας όπως η αυτόνομη δυσαντανακλαστικότητα, που απειλούν τη ζωή για κάποιους με ΚΝΜ (15). Οι καθηγητές πρέπει να γνωρίζουν τις επιπλοκές υγείας που συνδέονται με τη δισχιδή ράχη ή αυτές που σχετίζονται με συνοδό τραυματική εγκεφαλική βλάβη (19). Οι καθηγητές πρέπει να γνωρίζουν ότι τα παιδιά με ΚΝΜ παλεύουν για τον αυτό-προσδιορισμό τους και την ανεξαρτησία τους και δεν θα είναι τους είναι εύκολο να μιλήσουν για αυτά τα προβλήματα (90). Αυτό είναι ένα φαινόμενο για το οποίο θα πρέπει να είναι προετοιμασμένοι και οι θεραπευτές αποκατάστασης (78). Οι βοηθοί τάξης που έχουν πιο άμεση επαφή με τα παιδιά με ΚΝΜ στο δημοτικό, πρέπει να λάβουν εκπαίδευση και πληροφορίες για την ΚΝΜ και τις επιπτώσεις της, συμπεριλαμβανομένων και της συναισθηματικό και ψυχολογικό αντίκτυπο (30).
Κάκωση νωτιαίου μυελού και συμμετοχή στην εργασία Οι περισσότεροι άνθρωποι με ΚΝΜ μπορούν να εργαστούν και να είναι παραγωγικά μέλη της κοινωνίας αν γίνουν οι απαραίτητες μετατροπές στον εργασιακό χώρο όπου χρειάζονται. Δυστυχώς πολλοί άνθρωποι με ΚΝΜ και άλλες αναπηρίες αποκλείονται από την εργασία και τις ευκαιρίες βιοπορισμού, με αποτέλεσμα αυτοί και οι οικογένειες τους να ζουν στη φτώχεια και να περιθωριοποιούνται από το κοινωνικό σύνολο. Αυτός ο αποκλεισμός εκτός από ταλαιπωρία για τους ανθρώπους με ΚΝΜ είναι προβληματικός και για άλ189
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
λους λόγους: ■ Ο αποκλεισμός προκαλεί απώλεια πολύτιμων ανθρώπινων πόρων. Υπολογισμοί για τον οικονομικό αντίκτυπο της ανεργίας και της υποαπασχόλησης των ανθρώπων με αναπηρίες σε αντιπροσωπευτικές χώρες με χαμηλό ή μεσαίο μέσο εισόδημα κυμαίνεται από 3% έως 5% του ακαθάριστου εθνικού προϊόντος (91). ■ Η απασχόληση αποτελεί βασικό αποτέλεσμα αποκατάστασης για τα άτομα με ΚΝΜ (92), διότι είναι θετικά συνδεδεμένο με την προσαρμογή στην ΚΝΜ, την ικανοποίηση από τη ζωή, την αίσθηση σκοπού, της ψυχικής διέγερσης, της κοινωνικής επαφής και της ευεξίας (93-96). ■ Χαμηλό εισόδημα που σχετίζεται με την ανεργία ή την υποαπασχόληση συνδέεται με μεγαλύτερα ποσοστά θνησιμότητας μετά την ΚΝΜ (77, 97) και γενικότερα φτωχότερη υγεία (93, 98-100). Μια πρόσφατη συστηματική αναθεώρηση 50 μελετών πάνω στην ΚΝΜ και την ανεργία ανέδειξε, ότι ο μέσος όρος απασχόλησης παγκοσμίως για τα άτομα με ΚΝΜ ήταν μόλις 37%, παρότι το νούμερο για την απασχόληση κάποια στιγμή μετά την κάκωση ήταν 68% (101). Ο μέσος όρος απασχόλησης ατόμων με ΚΝΜ ανά ήπειρο ήταν υψηλότερος στην Ευρώπη (51%) και χαμηλότερος στη Βόρεια Αμερική με (30%). Στις χώρες του OECD, αυτά τα νούμερα είναι συγκρίσιμα με τα ποσοστά ανεργίας των ατόμων με τις σοβαρότερες αναπηρίες (102). Μια άλλη αναθεώρηση της βιβλιογραφίας πάνω στην επιστροφή στην εργασία των ατόμων με αναπηρία ανά τον κόσμο για τα έτη 2000-2006 έδειξε τα ποσοστά επιστροφής στην εργασία να κυμαίνονται από 21% έως 67%, και τα συνολικά ποσοστά απασχόλησης να κυμαίνονται από 11.5% έως 74% (103). Το μεγάλο εύρος των αποτελεσμάτων κα στις δύο συστηματικές αναθεωρήσεις αποδίδεται κυρίως σε διαφορές στον ορισμό της απασχόλησης. Παρά το γεγονός ότι υπάρχουν ικανοποιητικά δεδομένα σχετικά με τα ποσοστά απασχόλησης ανθρώπων με ΚΝΜ σε χώρες υψηλού μέσου εισοδήματος, ισοδύναμα δεδομένα σε χώρες χαμηλού και μεσαίου μέσου εισοδήματος είναι σποραδικά (104) και αποκαλύπτουν μεταβαλλόμενα ποσοστά απασχόλησης. Μερικές μελέτες βρίσκουν περίπου τους μισούς 190
ερωτηθέντες με ΚΝΜ να επιστρέφουν στην εργασία: 57% στην Μαλαισία (105), 50% στο Μπαγκλαντές (106) και 41% στην Ινδία (107). Ωστόσο, τα στοιχεία από άλλες μελέτες είναι πολύ χειρότερα. Για παράδειγμα, μια μελέτη με παρακολούθηση ασθενών του Εθνικού Κέντρου Αποκατάστασης στη Ζιμπάμπουε έδειξε ότι μόνο το 13% από τους συμμετέχοντες, εκ των οποίων μόνο ένας με τετραπληγία ήταν απασχολούμενοι (108). Οι φαινομενικά καλές στατιστικές μπορεί να διαστρεβλώνουν το γεγονός ότι η διαθέσιμη εργασία αμείβεται ανεπαρκώς (109). Η παροχή υποστήριξης κατά την επιστροφή στην εργασία παίζει σημαντικό ρόλο στις διαφορετικές εκβάσεις. Επειδή η μη τραυματική ΚΝΜ έχει όψιμη έναρξη, οι πληροφορίες που αφορούν την απασχόληση αφορούν κυρίως την τραυματική ΚΝΜ. Εξαίρεση αποτελούν οι νέοι με δισχιδή ράχη, που μαστίζονται από την ανεργία. Παρότι πληροφορίες υπάρχουν μόνο για την Ευρώπη και τις Η.Π.Α., τα ποσοστά μερικής ή πλήρους απασχόλησης νέων ανθρώπων με δισχιδή ράχη κυμαίνονται από 36% έως 41%, σε σύγκριση με το 75% αυτών χωρίς αναπηρία (40, 44) ή αυτών με άλλες σοβαρές χρόνιες παθήσεις (110). Μια μεγάλη μελέτη στην Ολλανδία ανέδειξε ένα σχετικά μεγάλο ποσοστό απασχόλησης ( 62.5%), αλλά οι περισσότεροι από τους ερωτηθέντες βρίσκονταν υπό προστατευόμενες εργασιακές συνθήκες, αντί στο γενικό εργατικό δυναμικό (43). Παρότι τα δεδομένα για την απασχόληση με ΚΝΜ είναι λίγα, είναι ξεκάθαρο το ότι, ακόμα και σε χώρες υψηλού μέσου εισοδήματος, τα ποσοστά ανεργίας είναι πολύ υψηλά για τα άτομα μετά από ΚΝΜ. Περισσότερη έρευνα χρειάζεται για τους λόγους της μακροχρόνιας ανεργίας, καθώς και για να ξεχωρίσουμε, αν είναι δυνατό, τους φραγμούς στην εργασία που σχετίζονται με την ΚΝΜ από τους φραγμούς στην εύρεση εργασίας που σχετίζεται με την αναπηρία γενικά (111).
Αντιμετώπιση των εμποδίων στην εργασία Υπάρχουν επαρκή δεδομένα από χώρες με υψηλό μέσο εισόδημα για τους καθοριστικούς παράγοντες στην εύρεση εργασίας και τους παράγοντες που εμποδίζουν τους ανθρώπους με ΚΝΜ να επιστρέψουν στη δουλειά μετά τον τραυματισμό ή να αποκτήσουν την
Κεφάλαιο 8
Εκπαίδευση και εργασία
πρώτη τους δουλειά (96, 103, 112-115). Παρότι το φύλο δεν είναι αξιόπιστος καθοριστικός παράγοντας για την απασχόληση (92, 98), η ηλικία κατά τον τραυματισμό καθώς και το μορφωτικό επίπεδο προ του τραυματισμού αποτελούν σταθερούς προγνωστικούς παράγοντες (48, 98, 116-120). Όσο πιο νέο, πιο μορφωμένο, λιγότερο τραυματισμένο, και όσο πιο σύντομα επιστρέψει στη δουλειά, τόσο πιο πιθανό είναι να είναι απασχολούμενο (120, 121). Η φυλή είναι επίσης ένας αξιόπιστος παράγοντας στις Η.Π.Α. με τους λευκούς να είναι μακράν περισσότερο απασχολούμενοι από τις άλλες ομάδες (81, 120-123). Όσο πιο σοβαρά τραυματισμένο και με περισσότερες λειτουργικές δυσκολίες είναι ένα άτομο, τόσο μικραίνει η πιθανότητα να είναι απασχολούμενο αυτό το άτομο (48, 98, 117, 124-127). Για όλα τα επίπεδα τραυματισμού τα ποσοστά απασχόλησης βελτιώνονται με την πάροδο του χρόνου (81, 128-130). Παρόλα αυτά, δευτερεύουσες παθήσεις, ιδιαίτερα αν απαιτούν νοσηλεία, μειώνουν τις πιθανότητες εύρεσης και της διατήρησης εργασίας ( 100,122, 131). Ωστόσο, τα εμπόδια στην απασχόληση είναι κυρίως περιβαλλοντολογικά, παρά δημογραφικά, βιολογικά ή ψυχολογικά (132). Η βιβλιογραφική αναθεώρηση και η εκτίμηση των ερευνητικών δεδομένων, που έγινε από το Spinal Cord Injury Rehabilitation Evidence (SCIRE) βαθμονομούν τις διακρίσεις και τη μη προσβασιμότητα στον εργασιακό χώρο ως του πιο σημαντικούς αρνητικούς παράγοντες στην απασχόληση (115). Ακόμη και οι μελέτες που τονίζουν θέματα υγείας, όπως η λειτουργική ανικανότητα να εκτελέσουν εργασιακά καθήκοντα, η έλλειψη σωματικής αντοχής, η εύκολη κόπωση, αναδεικνύουν ότι αυτά τα θέματα αποτελούν πρόβλημα μόνο όταν δεν μπορεί η φύση της δουλειάς και ο εργασιακός χώρος να τροποποιηθεί, ούτως ώστε το άτομο με ΚΝΜ να μπορεί να εκτελέσει την προτιμώμενη δουλειά (98, 133, 134). Γενικά, οι έρευνες δείχνουν συστηματικά ότι οι άνθρωποι με ΚΝΜ δεν μπορούν να εργαστούν λόγω έλλειψης προσβάσιμων μεταφορικών μέσων προς την εργασία τους (43, 103, 115). Αυτό είναι ένα παγκόσμιο φαινόμενο, ιδίως σε αγροτικές περιοχές, οι οποίες παρουσιάζουν συστηματικά υψηλότερα ποσοστά ανεργίας ατόμων με ΚΝΜ σε σχέση με αστικές περιοχές (34, 131, 135, 136).
Τα αίτια της ανεργίας σε ανθρώπους με ΚΝΜ είναι πολύπλοκα, όπως είναι και οι λόγοι αποτυχίας επίτευξης οικονομικής ανεξαρτησίας. Υπάρχει σημαντική μεταβλητότητα ανάμεσα στις μελέτες, και η πρόβλεψη επιστροφής στην εργασία ή πρόσβαση σε οικονομική υποστήριξη αποτελεί πρόκληση διότι, ακόμη και αν ξεπεραστούν όλα τα εμπόδια που εμποδίζουν ένα νέο άτομο να επιστρέψει στη δουλειά, ένα φαινομενικά ασήμαντο περιβαλλοντολογικό ή λογιστικό εμπόδιο στον εργασιακό χώρο, μπορεί να το κάνει αδύνατο (112, 114). Ωστόσο, οι τέσσερεις κατηγορίες προγνωστικών παραγόντων για εργασία και οικονομική ανεξαρτησία φαίνονται να είναι: επαγγελματική κατάρτιση και εργασιακή υποστήριξη, εσφαλμένες αντιλήψεις ή διακρίσεις κατά των ατόμων με ΚΝΜ, προσαρμογές στον εργασιακό χώρο, και εξασφάλιση οικονομικής ανεξαρτησίας.
Επαγγελματική κατάρτιση και υποστηριζόμενη εργασία Η επαγγελματική αποκατάσταση, που είναι μια διεπιστημονική προσέγγιση η οποία έχει ως στόχο την επιστροφή του εργαζόμενου σε μια επικερδή απασχόληση ή να διευκολύνει τη συμμετοχή στο εργατικό δυναμικό, συνήθως περιλαμβάνει πιο εξειδικευμένες υπηρεσίες όπως επαγγελματική καθοδήγηση και συμβουλευτική, επαγγελματική εκπαίδευση και εργασιακή τοποθέτηση για να βελτιστοποιηθούν οι πιθανότητες απασχόλησης (137). Επίσης η επαγγελματική αποκατάσταση έχει αποδειχτεί εξαιρετικά αποτελεσματική για την επιστροφή στην εργασία και την προετοιμασία του ατόμου για τις απαιτήσεις της δουλειάς, για μια πληθώρα παθήσεων που προκαλούν αναπηρία (138, 139). Η λειτουργική ανάρρωση μετά από μια τραυματική ΚΝΜ μπορεί να πάρει έως και 12 μήνες μετά την κάκωση και το άτομο θα χρειαστεί χρόνο για τις ιατρικές του ανάγκες και την προσαρμογή του στην οικογένεια και στο σπίτι. Μπορεί να φαίνεται μη ρεαλιστική η έναρξη ενεργού επαγγελματικού προγραμματισμού κατά τη διάρκεια της νοσηλείας της αποκατάστασης ή τους πρώτους μήνες μετά το εξιτήριο (113). Όμως υπάρχουν ισχυρά στοιχεία ότι η πρώιμη επαγγελματική αποκατάσταση που συντονίζεται με τις προσπάθειες ευόδωσης της προσαρμογής 191
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
στη ζωή, στην κοινότητα έχει καλύτερη πιθανότητα να βοηθήσει το άτομο να αποκτήσει και να διατηρήσει εργασία (48, 138, 139). Επομένως οι επαγγελματικοί στόχοι και οι προσδοκίες ενός παραγωγικού τρόπου ζωής πρέπει να ενσωματώνονται στο γενικότερο πρόγραμμα αποκατάστασης σε πρώιμο στάδιο, έτσι ώστε να βοηθήσουν τις πιο επικεντρωμένες προσπάθειες των επαγγελματικών συμβούλων αργότερα (140). Δυστυχώς ακόμη και στις ανεπτυγμένες χώρες, η επαγγελματική αποκατάσταση και συμβουλευτική δεν είναι διαθέσιμη στα άτομα με ΚΝΜ (96, 41), και πρέπει η θέση της ανάγκης ύπαρξης αυτών των υπηρεσιών να γίνει σε επίπεδο πολιτικής. Οι άνθρωποι με ΚΝΜ μπορεί να χρειαστούν εξειδικευμένες υπηρεσίες που απευθύνονται σε εργονομικά και τεχνικά θέματα που μπορεί να αντιμετωπίζουν (142, 143). Υπάρχουν επίσης ισχυρά στοιχεία στην περίπτωση της ΚΝΜ ότι ένας σημαντικός παράγοντας για την επιστροφή στην εργασία είναι η διαθεσιμότητα υπηρεσιών τοποθέτησης σε θέσεις εργασίας από επαγγελματικούς συμβούλους: ιδιαίτερα ως εύρεση εργασίας και δικτύωση, το να κάνουν την περιγραφή των θέσεων εργασίας να συμβαδίζουν με τις εργασιακές απαιτήσεις με τα ατομικά λειτουργικά δυνατά και αδύνατα σημεία, δεξιότητες αίτησης εργασίας και προετοιμασία για τις συνεντεύξεις για δουλειά (118). Ένα σημαντικό μέρος αυτών των υπηρεσιών είναι και η παροχή πληροφοριών για τις ευκαιρίες απασχόλησης, συμπεριλαμβανομένων και τις επαγγελματικές δεξιότητες και μορφωτικές απαιτήσεις, για να βοηθήσουν στην λήψη επαγγελματικών αποφάσεων (94, 143). Η ανάγκη για γενική κοινωνική υποστήριξη για τα άτομα με ΚΝΜ αναγνωρίζεται ως ένας σημαντικός παράγοντας επιτυχούς επανένταξης στην απασχόληση (132). Πολλοί πιστεύουν ότι μετά από μια τραυματική κάκωση, δεν είναι ικανοί να εκτελέσουν τα απαραίτητα καθήκοντα για να εργαστούν (124, 144, 145). Ψυχολογικοί παράγοντες που κυμαίνονται από μειωμένη αίσθηση ελέγχου της ζωής τους και αυτοεκτίμησης μέχρι και κατάθλιψη μπορεί να κάνουν την επαναφορά στην απασχόληση ακόμη δυσκολότερη (146148). Οι σοβαρές ψυχιατρικές παθήσεις όπως η κατάθλιψη μπορεί να χρειάζονται βοήθεια από επαγγελματία, στις περισσότερες περιπτώσεις όμως η ψυχολογική υποστήριξη από ομοίους με ΚΝΜ, την οικογένεια και φίλους μπορεί να είναι ιδιαίτερα απο192
τελεσματική στο να ενθαρρύνει το άτομο να συνεχίσει το ταξίδι του πίσω στην απασχόληση (149, 150). Αυτό είναι πολύ σχετικό σε συνθήκες με χαμηλούς πόρους όπου υπάρχει περισσότερη εξάρτηση από ανεπίσημα δίκτυα υποστήριξης (109). Για τα παιδιά και τους έφηβους, ιδίως αυτούς με δισχιδή ράχη, οι επαγγελματικοί σύμβουλοι πρέπει να εντάσσονται σε ένα ευρύτερο πρόγραμμα μετάβασης από το σχολείο στην εργασία. Παρότι ο απώτερος σκοπός είναι η δημιουργία στρατηγικών που θα οδηγήσουν στην απασχόληση στο μέλλον, συνήθως ο πρωταρχικός στόχος είναι να μείνουν οι νέοι στο σχολείο ούτως ώστε να μείνουν στο δρόμο που οδηγεί στην απασχόληση (26, 54). Για να αντιμετωπίσουν την πρόκληση της επιστροφής στην εργασία των ανθρώπων με σοβαρές κακώσεις που οδηγούν σε αναπηρία όπως η ΚΝΜ, υπάρχουν γενικά δύο μορφές προγραμμάτων επαγγελματικής αποκατάστασης στις ανεπτυγμένες χώρες. Τα μεταβατικά προγράμματα προσφέρουν εξορθολογισμένες υπηρεσίες που επικεντρώνονται στο να βοηθούν ανθρώπους να βρίσκουν και να διατηρούν ανταγωνιστική εργασία, που είναι γνωστή και ως "υποβοηθούμενη απασχόληση" (143, 151). Δίνεται έμφαση στην εκπαίδευση σε εργασιακές δεξιότητες, εργασιακή ετοιμότητα και σε υπηρεσίες τοποθέτησης σε θέσεις εργασίας, με υποστήριξη μετά την τοποθέτηση και παρακολούθηση από επαγγελματικούς συμβούλους (96, 128, 152, 153). Οι μεταβατικές υπηρεσίες είναι από τη φύση τους με υψηλές απαιτήσεις σε μέσα και μεγάλο κόστος, όμως αυτό το κόστος μπορεί να μειωθεί σημαντικά, αν αυτές οι υπηρεσίες ξεκινούν το δυνατό συντομότερο και ενσωματωθούν με άλλες υπηρεσίες αποκατάστασης (96, 137). Το πρόγραμμα επαγγελματικής αποκατάστασης Καλειδοσκόπιο που περιγράφεται στο Σχήμα 8.1 είναι ένα τέτοιο πρόγραμμα για την ΚΝΜ. Τα προγράμματα υποστηριζόμενης απασχόλησης χτίζουν επάνω στις δυνάμεις και ικανότητες αυτού που αναζητά εργασία. Αυτά τα προγράμματα τροποποιούν την υποστήριξη ώστε να απευθύνεται σε συγκεκριμένες ανάγκες στην εύρεση και επιλογή κατάλληλης απασχόλησης, παρέχουν υποστήριξη στον εργασιακό χώρο και υπεράσπιση στον εργοδότη όσο το άτομο προσαρμόζεται στη δουλειά, και παρέχουν συνεχιζόμενη μακροχρόνια υποστήριξη κατά τη διάρκεια της
Κεφάλαιο 8
Εκπαίδευση και εργασία
Πλαίσιο 8.1. Καλειδοσκόπιο, νοσοκομείο Burwood, Christchurch, Νέα Ζηλανδία Το Καλειδοσκόπιο είναι ένα πρόγραμμα έγκαιρης παρέμβασης επαγγελματικής αποκατάστασης που ξεκίνησε για την αντιμετώπιση των υψηλών ποσοστών ανεργίας των ατόμων με ΚΝΜ. To Καλειδοσκόπιο βασίζεται στο μοντέλο υποβοηθούμενης απασχόλησης και έχει τέσσερα χαρακτηριστικά, συγκεκριμένα: 1. Πρώιμη πρόσβαση σε άτομα με σοβαρές κακώσεις νωτιαίου μυελού και των οικογενειών τους. Αυτό γενικά γίνεται σε οξεία φάση τις πρώτες μία με δύο εβδομάδες μετά την εισαγωγή. Οι κακώσεις του νωτιαίου μυελού συχνά οδηγούν σε μακροχρόνιες νοσηλείες οπότε υπάρχουν επαρκείς ευκαιρίες για επαφή με αυτόν που τραυματίστηκε και με την οικογένεια του. Ο κύριος στόχος βέβαια εκείνη την περίοδο είναι η σωματική αποκατάσταση του ατόμου. Ωστόσο μπορούν να τεθούν ισχυρές βάσεις για τα επαγγελματικά στο μέλλον, και δημιουργούνται οι προσδοκίες, ότι η συνέχιση της εργασίας είναι και ρεαλιστική και πιθανή. 2. Λεπτομερής σχεδιασμός καριέρας. Αυτό δίνει τη δυνατότητα στους ανθρώπους να σχεδιάσουν μια διαδρομή την οποία έχουν κίνητρο να ακολουθήσουν. Αν οι άνθρωποι δεν είναι ικανοί να επιτελέσουν την πρότερη εργασία τους, είναι αβέβαιοι για το τι τους επιφυλάσσει το μέλλον. Ο σχεδιασμός του επαγγελματικού μέλλοντος ενός ανθρώπου βασιζόμενοι σε κίνητρα, εμπειρία, δεξιότητες και τις χιλιάδες δυνατότητες απασχόλησης βοηθάει στο να δώσει στον άνθρωπο επιθυμία να επιστρέψει πλήρως και ενεργά στο εργατικό δυναμικό. 3. Υποστήριξη μετά την τοποθέτηση. Αυτή η υποστήριξη είναι βασική στο να εξασφαλίσει την ομαλή μετάβαση πίσω στο εργατικό δυναμικό το δυνατόν ομαλότερα. Ένας στόχος κλειδί της υποστήριξης είναι να ενισχύσει τον εργαζόμενο επαρκώς, ούτως ώστε να πάψει σταδιακά η ανάγκη τακτικής υποστήριξης. Ωστόσο, πρέπει να είναι ξεκάθαρο σε όλους τους συμμετέχοντες ότι αν προκύψει η ανάγκη υποστήριξης κάποια στιγμή ή αν χρειαστεί συνεχόμενο πρόγραμμα υποστήριξης θα παρέχεται. 4. Μια υποστηρικτική και με κίνητρα τοπική επιχειρηματική κοινότητα. Η τοπική επιχειρηματική κοινότητα έχει πάρα πολλά να προσφέρει σε ανθρώπους, που επιθυμούν να επιστρέψουν στο εργατικό δυναμικό μετά από μια σοβαρή ασθένεια ή κάκωση. Το Καλειδοσκόπιο έχει ένα επιχειρηματικό δίκτυο με πάνω από 40 επιχειρήσεις σε ποικιλία κλάδων. Αυτοί οι εργοδότες έχουν προσφερθεί να συναντηθούν και να μοιραστούν πληροφορίες πάνω στον κλάδο τους, και να βοηθήσουν δημιουργηθεί η στρατηγική εύρεσης εργασίας, η οποία θα βοηθήσει το άτομο να κερδίσει μια θέση σε αυτόν τον τομέα. Το πρόγραμμα Oho Ake ( "ξύπνα" και "σήκω") βασίζεται πάνω στις ίδιες αρχές και συμπεριλαμβάνει ανθρώπους με ΚΝΜ σε χρονία φάση που έχουν βιώσει την ανεργία.
απασχόλησης (155). Το κλειδί στην προσέγγιση είναι οι εξατομικευμένες υπηρεσίες, δεδομένου ότι κάθε άτομο με ΚΝΜ είναι διαφορετικό, όσον αφορά τη λειτουργικότητα, τις δεξιότητες, την προϋπηρεσία του και τις μεταφορικές του ανάγκες, και χρειάζεται διαφορετικές προσαρμογές στο χώρο εργασίας. Παρότι η υψηλά εξατομικευμένη αξιολόγηση είναι χρονοβόρα, υπάρχουν στοιχεία ότι αυτή η προσέγγιση όχι μόνο διευκολύνει τον σύμβουλο να διαμορφώσει τις υπηρεσίες, να ταιριάζουν με τις ανάγκες του ατόμου, αλλά και κάνει δυνατό για τους ανθρώπους με ΚΝΜ να αποκτήσουν περισσότερο έλεγχο πάνω στη ζωή τους (151). Παρότι το μοντέλο της υποστηριζόμενης απασχόλησης χρησιμοποιείται κυρίως σε ανεπτυγμένες χώρες, ένα από τα πιο επιτυχημένα παραδείγματά του είναι το "Κέντρο για την Αποκατάσταση των Παράλυτων" (Center for the Rehabilitation of the Paralyzed) στο Μπαγκλαντές (βλ. σχήμα 8.2.). Η απασχόληση σε "προστατευμένο εργαστήριο" είναι ο δεύτερος από τους δύο τύπους μοντέλου προγράμματος επαγγελματικής αποκατάστασης. Είναι η
παραδοσιακή προσέγγιση όπου σε ανθρώπους με βαριές αναπηρίες δίνονται εργασίες να επιτελέσουν σε συνθήκες εργαστηρίου υπό την επίβλεψη ειδικών επαγγελματικής αποκατάστασης. Αυτή η επιλογή λαμβάνεται μερικές φορές ως πιο ρεαλιστική για άτομα με σύνθετες ανάγκες και πολλές φορές προσφέρεται ως το πρώτο βήμα της ανοικτής απασχόλησης. Στο σχήμα 8.3 δίνεται ένα παράδειγμα τέτοιου προγράμματος σε λειτουργία στη νότια Ινδία. Τα "προστατευμένα εργαστήρια" που δεν είναι απευθείας συνδεδεμένα με προγράμματα μετάβασης σε ανταγωνιστική απασχόληση υποθάλπτουν το διαχωρισμό και λόγω αυτού δεν είναι η ιδανική προσέγγιση στην εφαρμογή των ανθρώπινων δικαιωμάτων των ατόμων με ΚΝΜ. Στην ΚΝΜ η ομότιμη συμβουλευτική υποστηρίζεται από καιρό ως ένα βασικό κομμάτι των προγραμμάτων επαγγελματικής αποκατάστασης (140). Παρότι οι πρώιμες προσεγγίσεις επαγγελματικής αποκατάστασης ελέγχονταν από επαγγελματίες αποκατάστασης, οι έρευνες δείχνουν ότι ενός υψηλού βαθμού επαγγελματική υποστήριξη είναι παρεμβατική και χρειάζεται 193
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Πλαίσιο 8.2. "Κέντρο για την Αποκατάσταση των Παραλύτων" (CRP) στο Μπαγκλαντές Το Μπαγκλαντές είναι μια φτωχή χώρα, με του μισούς από τους 150 εκατομμύρια κατοίκους του να ζουν κάτω από το όριο της φτώχειας. Δεν υπάρχει κάποιο γενικό δίκτυο κοινωνικών ασφαλίσεων, και οι περισσότεροι άνθρωποι με αναπηρία δε λαμβάνουν κάποιο οικονομικό βοήθημα, που να τους βοηθά με τις επιπλέον ανάγκες συνεπεία της αναπηρίας τους. Το "Κέντρο για την Αποκατάσταση των Παραλύτων" (CRP), μια ΜΚΟ που εξειδικεύεται στην αποκατάσταση ατόμων με ΚΝΜ, δημιουργήθηκε το 1979, σαν απάντηση στην απελπιστική ανάγκη για υπηρεσίες αποκατάστασης για άτομα με ΚΝΜ. Το CRP από τότε έχει εξελιχθεί σε μια διεθνώς αναγνωρισμένη οργάνωση η οποία παρέχει πλήρους εύρους υπηρεσίες υποβοηθούμενης απασχόλησης, συμπεριλαμβανομένων φυσικής και ψυχολογικής αποκατάστασης, συμβουλευτική για τοποθέτηση εργασίας, επαγγελματική επανεκπαίδευση, βοήθεια στην εξασφάλιση μικροδανείων χαμηλών επιτοκίων για αυτοαπασχόληση, σχεδιασμένη επανένταξη στην κοινότητα, εξασφάλιση ότι το οικιακό περιβάλλον είναι ασφαλές, και επιμόρφωση των ντόπιων κατοίκων στη φύση και στις συνέπειες της ΚΝΜ. Η έδρα του CRP είναι στο Savar. Λειτουργεί επίσης και 2 κέντρα οικιακής επαγγελματικής επανεκπαίδευσης (CRP-Gonokbari για γυναίκες και κορίτσια, και CRP-Gobindapur για εξωτερικούς ασθενείς και υπηρεσίες στην κοινότητα), όπως και ένα κέντρο για διάγνωση και θεραπεία στην πρωτεύουσα Dhaka. Το CRP λειτουργεί 13 προγράμματα σε κοινοτική βάση τα οποία εμπλέκονται στην πρόληψη ατυχημάτων και αναπηρίας, καθώς και συνηγορία υπέρ της αναπηρίας και δραστηριότητες δικτύωσης για να προάγουν τα θέματα της ΚΝΜ. Επίσης το CRP κάνει καμπάνιες αφύπνισης και διαφήμισης για να καταρρίψει τους φραγμούς και το στίγμα των ανθρώπων με ΚΝΜ και άλλες αναπηρίες. Πηγές (34, 106, 156)
συντονισμός μεταξύ των πελατών τους και των δουλειών ή άλλων εργασιακών χώρων, που επιθυμούν να εργαστούν. Ο ρόλος των επαγγελματιών αποκατάστασης είναι να λειτουργούν ως σύνδεσμοι μεταξύ των εργοδοτών και των πελατών τους και να εξουδετερώνουν οποιαδήποτε προκατάληψη του εργοδότη στο να προσλάβει κάποιον με σοβαρή αναπηρία (141, 157). Οι επαγγελματίες αποκατάστασης πρέπει να τονίζουν τους εργασιακούς στόχους ενός ανθρώπου με ΚΝΜ, να εκτιμούν την λειτουργική εργασιακή δυνατότητα του ατόμου εν όψει της διαθέσιμης υποστήριξης, και να κάνουν αποδεκτό ότι ο σχεδιασμός καριέρας δεν σταματάει με την απόκτηση μιας θέσης εργασίας (143).
Ξεπερνώντας τις παρανοήσεις σχετικά με την κάκωση του νωτιαίου μυελού Οι παρανοήσεις σε σχέση με την ΚΝΜ και την ικανότητα του ατόμου με ΚΝΜ να εργαστεί σε ανταγωνιστική δουλειά, ιδίως ανάμεσα στους εργοδότες και στους συναδέλφους, αναφέρονται συχνά ως σημαντικός παράγοντας που επηρεάζει αρνητικά τις προοπτικές απασχόλησης των ατόμων με αναπηρία γενικά και αυτών με ΚΝΜ ειδικά (114, 124, 140, 151, 158,159). Μια μελέτη από το Μπαγκλαντές αναφέρει ότι κάποιοι εργοδότες γενικά αντιλαμβάνονται πιθανούς εργαζόμενους με ΚΝΜ ως "άρρωστα" και "λιγότερο παραγωγικά" (34). Στην Ολλανδία, το 57% των νέων με
Πλαίσιο 8.3. Προστατευμένα εργαστήρια για βετεράνους με ΚΝΜ στην Ινδία Δύο κέντρα αποκατάστασης παραπληγικών στο Kirkee και στο Mohali, με 109 και 34 κρεβάτια αντιστοίχως, λειτουργούν για την αποκατάσταση παραπληγικών και τετραπληγικών απόστρατων. Αυτά τα κέντρα είναι φιλανθρωπικά ιδρύματα, που χρηματοδοτούνται από το Kendriya Sainik Board (το οποίο είναι μέρος του τμήματος αποστράτων του Υπουργείου Αμύνης) και του Υπουργείου Κοινωνικής Δικαιοσύνης και Ενίσχυσης. Όλα τα άτομα σε αυτά τα κέντρα λαμβάνουν επαγγελματική εκπαίδευση και δεξιότητες , όπως ύφανση, πλέξιμο, ράψιμο και φτιάξιμο κεριών. Απασχολούνται σε προστατευμένα εργαστήρια μέσα στα κέντρα και λαμβάνουν μικρούς μηνιαίους μισθούς ώστε να είναι σχετικά οικονομικά ανεξάρτητοι. Τα προστατευμένα εργαστήρια σε αυτά τα κέντρα θεωρούνται μόνιμη ή ημιμόνιμη εργασιακή τοποθέτηση για αυτά τα άτομα γιατί θεωρείται ότι δε θα μπορέσουν να βρουν δουλειά στην κοινότητα. Η δραστηριότητα ενός απόστρατου στο εργαστήρι πρέπει να θεωρείται ως δουλειά και ως ένα μέρος που πηγαίνουν να εργαστούν κάθε μέρα. Τα κέντρα επίσης παρέχουν ιατρικές αγωγές, φυσικοθεραπείες, φυσική άσκηση, σπορ και εκπαίδευση στους ηλεκτρονικούς υπολογιστές για βοηθήσουν τους ασθενείς να είναι πιο ανεξάρτητοι. Πηγή (107)
194
Κεφάλαιο 8
Εκπαίδευση και εργασία
δισχιδή ράχη ανέφεραν ότι αντιμετώπισαν πρόβλημα στο να βρουν δουλειά λόγω αρνητικών συμπεριφορών από τους εργοδότες (43), ένα αποτέλεσμα επιβεβαιωμένο και από ευρήματα σε άλλες μελέτες (25, 41, 160). Σε μια κλασική μελέτη για διακρίσεις στον εργασιακό χώρο, οι υποψήφιοι χωρίς αναπηρία είχαν 1,78 φορές παραπάνω πιθανότητες να προσληφθούν, από τους αντίστοιχους με αναπηρία. Υποστηρίζεται επίσης, ότι όσο πιο εμφανές είναι το φυσικό πρόβλημα (π.χ. η παρουσία αναπηρικού αμαξιδίου), τόσο πιο πιθανό είναι ο εργοδότης να είναι απρόθυμος να προχωρήσει σε πρόσληψη (161). Το να ξεπεράσουμε τις διακρίσεις στον εργασιακό χώρο απαιτεί αφοσίωση στη νομοθεσία κατά των διακρίσεων, όπως και νομικές διαδικασίες για αποζημιώσεις. Νόμοι όπως ο Americans with Disabilities Act 1990 (όπως τροποποιήθηκε το 2007) γίνονται όλο και πιο συχνοί ανά τον κόσμο. Μια μελέτη της εφαρμογής του νόμου στην περίπτωση της ΚΝΜ έχει δείξει ότι, παρότι το ποσοστό επιτυχίας είναι πολύ χαμηλό, οι άνθρωποι με ΚΝΜ τείνουν να είναι πιο επιτυχείς με τις προσφυγές τους από τις άλλες ομάδες αναπηρίας (162). Οι αντιρατσιστικές νομοθεσίες δεν είναι ο μόνος δρόμος για να προχωρήσουμε. Έρευνες αποκαλύπτουν μια τάση προς πολύ θετικές συμπεριφορές των εργοδοτών απέναντι στα άτομα με αναπηρία, το οποίο όμως δεν μεταφράζεται πάντα σε θετική αντιμετώπιση όταν εκτιμούν συγκεκριμένους υποψήφιους για πρόσληψη (163, 164). Μια ακόλουθη μελέτη ανέδειξε ότι εργοδότες με προηγούμενη εμπειρία με ανθρώπους με αναπηρία, ή που η γνώση τους περί αναπηρίας είχε αυξηθεί με προγράμματα αφύπνισης για την αναπηρία πραγματοποιημένα από επαγγελματικούς συμβούλους, ήταν πολύ πιο πρόθυμοι να προσλάβουν κάποιον με αναπηρία (158). Αυτό υποδεικνύει ότι τα επαγγελματικά αποτελέσματα των ανθρώπων με αναπηρία μπορεί να βελτιωθούν αν οι κοινότητα της αποκατάστασης παίξει ενεργό ρόλο παρέχοντας υποστήριξη σε εργοδότες με λιγότερη εμπειρία με την αναπηρία. Μια πρόσφατη μελέτη, παρά τις προσδοκίες, έδειξε ότι η αντιλαμβανόμενη διάκριση δεν ήταν σχετιζόμενη με χαμηλότερη πιθανότητα επιστροφής στην δουλειά, το οποίο υποδεικνύει ότι οι άνθρωποι με ΚΝΜ αποκτούν μεγαλύτερη συνείδηση και είναι πιο επιτυχείς στο να αντιμετωπίζουν ρατσιστικές και προδιατεθειμένες συμπεριφορές των εργοδοτών (145).
Εξασφάλιση προσαρμογών στον εργασιακό χώρο Η επιτυχής επιστροφή στην εργασία εξαρτάται από τις προσαρμογές στον εργασιακό χώρο (95, 99, 101, 103, 113, 165). Παρότι οι προσαρμογές ξεκινάνε από θέματα φυσικής πρόσβασης, οι ανάγκες είναι πιο εκτεταμένες και περιλαμβάνουν την ενσωμάτωση βοηθητικής τεχνολογίας στην εργασία, και τροποποιήσεις στην φύση και στη θέση της εργασίας. Πρακτικά παραδείγματα προσαρμογών που αφορούν την ΚΝΜ αντλούνται από τους ανθρώπους με ΚΝΜ: σε μια πρόσφατη ποιοτική μελέτη με 266 ανθρώπους με κινητικά και αισθητηριακά προβλήματα που εισήλθαν στην εργασία, ένα σύνολο 1553 συγκεκριμένων και λεπτομερών προσαρμογών αναγνωρίστηκαν (166). Υπάρχουν επαρκείς πληροφορίες για το πως να κάνουμε τον εργασιακό χώρο φυσικά προσβάσιμο, συμπεριλαμβανομένων δωρεάν διαδικτυακών πηγών που προσφέρουν λεπτομερέστατες και πρακτικές πληροφορίες, όπως η, στις Η.Π.Α εδρεύουσα, Jobs Accommodation Network (JAN), μια πύλη με πρακτικές πληροφορίες για πρωτοποριακές και δοκιμασμένες προσαρμογές για άτομα με αναπηρίες, συμπεριλαμβανομένων και αυτών που προέκυψαν από ΚΝΜ (167). Από το 2004, η JAN διεξάγει μια μελέτη με τους εργοδότες για να καθορίσει το κόστος και τα οφέλη από τις τροποποιήσεις στον εργασιακό χώρο, συστηματικά αποδεικνύοντας τα οφέλη στους εργαζόμενους και δείχνοντας ότι το όφελος που λαμβάνουν οι εργοδότες υπερισχύει μακράν του κόστους των προσαρμογών (167). Παραδείγματα τροποποιήσεων του εργασιακού χώρου που σχετίζονται με τις ανάγκες των ατόμων με ΚΝΜ περιλαμβάνουν: πρόσβαση αμαξιδίου από το σημείο εισόδου (σε όλες τις καιρικές συνθήκες) στο σταθμό εργασίας και σε όλες τις περιοχές απαραίτητες για τα εργασιακά καθήκοντα. Επίσης περιλαμβάνουν μεγάλες πόρτες χωρίς εμπόδια και διαδρόμους για τους χρήστες αναπηρικών αμαξιδίων, τροποποιήσεις στο σταθμό εργασίας, όπως: ρυθμιζόμενα καθ’ ύψος γραφεία ή τραπέζια, προσβάσιμα συστήματα αρχειοθέτησης και άλλους χώρους εργασίας. Προσβάσιμες τουαλέτες, χώρους φαγητού, συμβουλίων και ανάπαυσης (168). 195
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Για τους εργαζόμενους με ΚΝΜ, οι προσαρμογές για τα αμαξίδια είναι πολύ σημαντικές, αλλά για τις περισσότερες δουλειές είναι εξίσου σημαντικό να έχουν πρόσβαση σε βοηθητική τεχνολογία που υπερνικάει τους λειτουργικούς περιορισμούς του κάτω αλλά και του πάνω μέρους του σώματος που σχετίζονται με την ΚΝΜ. Σε μια μελέτη ανθρώπων με ΚΝΜ που εργάζονταν, η πλειοψηφία ανέφερε χρήση τροποποιημένων τηλεφώνων, μεγεθυντές και άλλα βοηθήματα για να εκτελέσουν τα εργασιακά τους καθήκοντα, και είπαν ότι αυτά τα βοηθήματα τους αύξησαν σημαντικά την παραγωγικότητα και την αυτοεκτίμηση τους (144). Συγκεκριμένα, πολλές μελέτες έδειξαν ότι οι άνθρωποι με ΚΝΜ που εργάζονται χρησιμοποιούν ηλεκτρονικό υπολογιστή στη δουλειά πιο συχνά από το γενικό πλυθησμό (169-172). Αυτό κάνει τη διαθεσιμότητα και την προσβασιμότητα τέτοιου εξοπλισμού βασική για μια επιτυχής επιστροφή στην εργασία. Για αυτούς που αντιμετωπίζουν δυσκολίες στο πάνω μέρος του σώματος, τελευταίες εξελίξεις στην τεχνολογία, όπως ποντίκι που ελέγχεται από τις κινήσεις του κεφαλιού, για το οποίο ο χρήστης με ΚΝΜ φοράει ένα εξάρτημα στο κεφάλι και με αυτό ελέγχει τις κινήσεις του δείκτη του ποντικιού, μπορεί να χρειαστούν. Για να είναι χρήσιμη η βοηθητική τεχνολογία για ένα άτομο με κάκωση νωτιαίου μυελού, πρέπει να πρέπει να είναι πλήρως ενσωματωμένη στον εργασιακό χώρο. Εν μέρει αυτό είναι θέμα φυσικής προσβασιμότητας, αλλά οι επαγγελματίες επαγγελματικής αποκατάστασης έχουν παρατηρήσει ότι είναι επίσης σημαντικό να γίνει βέβαιο ότι οι εργοδότες και οι συνάδελφοι κατανοούν την αναγκαιότητα για τον ειδικό εξοπλισμό, ότι παρέχουν στους χρήστες αρκετές πληροφορίες στο πως να την χρησιμοποιούν, και στο να γνωρίζουν ότι είναι απαραίτητη η τεχνική υποστήριξη για τη συντήρηση και την επισκευή ούτως ώστε η δουλειά του χρήστη να μην διακόπτεται (169, 173). Μερικές φορές η εξελιγμένη τεχνολογία ούτε είναι διαθέσιμη ούτε είναι απαραίτητη, όπως όταν η δουλειά μπορεί να επιτελεστεί παρέχοντας έναν βοηθό για τα εργασιακά καθήκοντα. Σε μερικές περιπτώσεις αυτό το ρόλο μπορούν να εκτελέσουν ζώα εκπαιδευμένα στο να μεταφέρουν αντικείμενα και να διευκολύνουν στην εκτέλεση κάποιων εργασιών (174).
Εφόσον ο τραυματισμός πολύ πιθανόν να έχει κάποιο αντίκτυπο στα καθήκοντα που μπορούν να εκτελεστούν, η "εύλογη προσαρμογή" μπορεί να περιλαμβάνει και αλλαγές στη φύση της εργασίας. Ο τρόπος που εκτελούνται οι απαραίτητες εργασίες μπορεί να τροποποιηθεί, η εργασία μπορεί να γίνει μερικής απασχόλησης, ή το πρόγραμμα εργασίας μπορεί να τροποποιηθεί, συμπεριλαμβανομένου του να επιτρέπει στον εργαζόμενο να φεύγει όταν είναι απαραίτητο για τη διαχείριση της κύστης, του εντέρου ή για ανάπαυση. Μια πρόσφατη Ευρωπαϊκή μελέτη έδειξε ότι, ενώ το 60% των νέων με ΚΝΜ επέστρεψε στη δουλειά μετά τον τραυματισμό, σχεδόν όλοι εκμεταλλεύτηκαν τροποποιήσεις στην εργασία, όπως μείωση στην πίεση του χρόνου, ελαστικά ωράρια, και σε μερικές περιπτώσεις μείωση των ωρών εργασίας στο μισό (141). Μια εποχή τεχνολογικών και οικονομικών αλλαγών, μαζί με μια έμφαση στην ισορροπία μεταξύ εργασίας και ζωής, σημαίνει ότι όχι μόνο οι άνθρωποι με αναπηρίες επιθυμούν να εργαστούν διαφορετικά. Σε μερικές χώρες, οι κυβερνήσεις ενθαρρύνουν ενεργά, προγράμματα με ελαστικά ωράρια εργασίας και επιμερισμού εργασίας, το οποίο μπορεί εξίσου να ωφελεί και άτομα με ΚΝΜ (152). Η τηλεργασία, κατά την οποία η εργασία εκτελείται από απομακρυσμένο μέρος χρησιμοποιώντας μια πληθώρα τεχνολογιών πληροφορικής και επικοινωνιών, μπορεί να είναι ένας τρόπος αντιμετώπισης των εμποδίων μεταφοράς, φυσικών περιβαλλοντολογικών φραγμών και σωματικών περιορισμών όπως η κόπωση που οφείλεται σε ΚΝΜ ή σε δευτερογενείς παθήσεις (170). Τα πλεονεκτήματα της τηλε-εργασίας πρέπει να ζυγιστούν έναντι στους πιθανούς κινδύνους της κοινωνικής απομόνωσης και το ρίσκο του εργασιακού διαχωρισμού. Η τηλε-εργασία μπορεί επίσης να υπονομεύσει τις προσπάθειες που γίνονται για μεταφορικά μέσα, κτίρια και κοινότητες πιο προσβάσιμες για ανθρώπους με κινητικούς περιορισμούς. Χρειάζεται περισσότερη έρευνα πάνω στα πλεονεκτήματα και τα μειονεκτήματα του συγκεκριμένου θέματος (111).
Αυτοαπασχόληση Σε πολλές αναπτυσσόμενες χώρες, η αυτοαπασχόληση με τη μορφή μικρής κλίμακας κατασκευή και πώληση
196
Κεφάλαιο 8
Εκπαίδευση και εργασία
τεχνουργημάτων και χειροτεχνιών ή η πώληση αγροτικών προϊόντων, αποτελούν μια πηγή εισοδήματος για ανθρώπους με αναπηρία και αποτελεί μια επιλογή εργασίας για ανθρώπους με ΚΝΜ (109). Στις ανεπτυγμένες χώρες η αυτοαπασχόληση έχει επίσης οφέλη για τους ανθρώπους με ΚΝΜ: η εργασία από το σπίτι ή πλησίον στην κοινότητα αποφεύγει τα εμπόδια στις μεταφορές και στην προσβασιμότητα, διακρίσεις στον εργασιακό χώρο και αρνητικές συμπεριφορές στον εργασιακό χώρο από συναδέλφους, και επιτρέπει ελαστικές συνθήκες και ωράρια εργασία. Τα στοιχεία δείχνουν ότι οι άνθρωποι με κινητικά και μυοσκελετικά προβλήματα ιδίως, είναι πιο πιθανόν να είναι αυτοαπασχολούμενοι (159). Τα μειονεκτήματα της αυτοαπασχόλησης είναι η απομόνωση και η έλλειψη ανάπτυξης δεξιοτήτων, χαμηλότερα εισοδήματα, και το γεγονός ότι οι το κόστος των σχετιζόμενων με την εργασία βοηθητικών συσκευών εκπονείται εξ ολοκλήρου από το άτομο (171). Το πιο σημαντικό εμπόδιο στην αυτοαπασχόληση είναι η αρχική οικονομική επιβάρυνση του να ξεκινήσεις μια επιχείρηση, είτε ως κεφάλαιο, είτε για εξοπλισμό ή κόστος εκπαίδευσης. Μια εκτενής μελέτη των επιλογών αυτοαπασχόλησης στην Ευρώπη ανέδειξε ότι, επειδή τα άτομα με αναπηρία θεωρούνται από τους δανειστές ως υψηλού ρίσκου, καταφεύγουν στο οικογενειακό τους περιβάλλον για πόρους. Σε χώρες όπως το Ηνωμένο Βασίλειο, άνθρωποι με αναπηρίες μπόρεσαν να εκμεταλλευτούν φορολογικές εκπτώσεις και άλλα αναπηρικά βοηθήματα εισοδήματος, και μερικές φορές μικρά επιχειρηματικά δάνεια που διατίθενται μέσω γραφείων ευρέσεως εργασίας (159). Ωστόσο ακόμη και στον Καναδά και στο Ηνωμένο Βασίλειο, που προσφέρουν γενναιόδωρη οικονομική βοήθεια με τη μορφή δωρεών, δανείων και φοροαπαλλαγών, υπάρχει χαμηλή ζήτηση λόγω έλλειψης προσβάσιμης πληροφόρησης (159, 175). Η πρόσβαση στη χρηματοδότηση για το στήσιμο μιας μικρής επιχείρησης μπορεί να αποδειχθεί μεγάλη πρόκληση για ανθρώπους με ΚΝΜ που ζουν σε αναπτυσσόμενες χώρες. Σε αυτές τις χώρες οι μικροχρηματοδοτικοί διακανονισμοί παίζουν σημαντικό ρόλο στο να κάνουν δυνατό σε άτομα με αναπηρία να βιοποριστούν. Η μικροχρηματοδότηση αναφέρεται στην παροχή φυσιολογικών οικονομικών υπηρεσιών, όπως
επιχειρηματικά δάνεια, σε άτομα και μικρές επιχειρήσεις που δεν έχουν πρόσβαση σε προσιτή χρηματοδότηση. Μια εκτενής αναθεώρηση της βιβλιογραφίας και των πρακτικών στην Αφρική και στην Ασία συμπέρανε ότι οι άνθρωποι με αναπηρίες δεν μπόρεσαν να επωφεληθούν εξίσου από τα μικροχρηματοδοτικά προγράμματα (176, 177). Η Handicap International το 2006 διεξήγαγε μια ενδελεχή μελέτη της πρόσβασης σε μικροχρηματοδοτικούς οργανισμούς στις πιο φτωχές χώρες της Αφρικής και της Ασίας και βρήκε ότι μόνο το 0,5% των πελατών αυτών των χρηματοδοτικών οργανισμών είχαν αναπηρίες (178). Δείχνοντας τις επιτυχίες με την Asociación de Discapacitados de la Resistencia Nicaragüense στη Νικαράγουα και με την International Committee of the Red Cross στο Αφγανιστάν και αλλού, η αναφορά ισχυρίζεται ότι η εμπλοκή ΜΚΟ με ισχυρή δύναμη ανάπτυξης ικανοτήτων είναι απαραίτητη για την επίλυση αυτού του σύνθετου προβλήματος. Άλλη έρευνα ισχυρίζεται ότι, οι οργανισμοί αποταμίευσης και δανεισμού που βασίζονται στην κοινότητα έχουν τη δυνατότητα να αυξήσουν τα ποσοστά απασχόλησης των ατόμων με αναπηρία, κα ότι οι οργανισμοί υπέρ της αναπηρίας μπορούν να παίξουν ένα σημαντικό ρόλο ενώνοντας δυνάμεις με αυτούς τους κοινοτικούς οργανισμούς (177).
Κοινωνική προστασία Η αναπηρία είναι στενά συνδεδεμένη με μεγάλη ανέχεια παγκοσμίως, και η ΚΝΜ δεν αποτελεί εξαίρεση. Μια Αυστραλιανή μελέτη υπολόγισε το μέσο ετήσιο εισόδημα των εργαζομένων ανθρώπων με τετραπληγία να είναι το μισό του μέσου όρου των ετησίων αποδοχών του γενικού πληθυσμού (179). Σε μια Μαλαισιανή μελέτη, οι αποδοχές ατόμων που εργάζονταν μετά τον τραυματισμό, ήταν στο 50%σημαντικά λιγότερες από αυτά που κέρδιζαν πριν τον τραυματισμό (105). Στη Νότια Ινδία οι περισσότεροι ασθενείς με ΚΝΜ βρέθηκαν να ζουν κάτω από το όριο της φτώχειας (109, 135), και στο Νεπάλ λιγότερο από το μισό του πληθυσμού που μελετήθηκε είχε οποιοδήποτε εισόδημα μερικά χρόνια μετά το εξιτήριο τους από την αποκατάσταση (180). Στη Ζιμπάμπουε, μια μελέτη ανέφερε ότι το ένα τρίτο από αυτούς που επιβίωσαν μια ΚΝΜ δεν είχαν
197
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
κανένα έσοδο και βασιζόντουσαν σε συγγενείς και φίλους για οικονομική υποστήριξη (108).Στην Γκάνα, αναφέρεται ότι οι άνθρωποι με κινητικούς περιορισμούς έχουν καταφύγει σε παράνομη επαιτεία λόγω της έλλειψης επιλογών για απασχόληση και κοινωνικών υπηρεσιών (181). Εκτός από αυτές τις μεμονωμένες μελέτες, πολύ λίγα γνωρίζουμε για το πόσοι άνθρωποι με ΚΝΜ είναι οικονομικά ανεξάρτητοι. Είναι πιθανό ότι πολλοί άνθρωποι βασίζονται σε προγράμματα κοινωνικής πρόνοιας, αναπηρικές συντάξεις, επιδόματα, οικογενειακή υποστήριξη, ή συναλλαγές σε είδος. Τα κοινωνικά δίκτυα ασφαλείας είναι επιρρεπή σε οικονομικές κρίσεις και είναι ελλιπή στα περισσότερα φτωχότερα μέρη του κόσμου. Σε μερικές χώρες, όπως η Ινδία, υπάρχουν επιδόματα που περιορίζονται στους δημοσίους υπαλλήλους και στους στρατιωτικούς, τα οποία βοηθούν τους ανθρώπους από αυτούς τους τομείς μετά από ΚΝΜ (182, 183). Οι περισσότερες χώρες με υψηλό μέσο εισόδημα, αλλά και αυξανόμενο νούμερο χωρών μεσαίου μέσου εισοδήματος όπως η Βραζιλία, η Ναμίμπια και η Νότιος Αφρική, έχουν δύο μορφές κοινωνικής προστασίας. Η μία είναι προσωρινή και με οικονομικά κριτήρια παρέχει κάποιο εισόδημα μέχρι να αποκατασταθεί η μόνιμη απασχόληση (π.χ. επιδόματα ανεργίας, προσωρινά επιδόματα αναπηρίας). Η άλλη είναι μια μόνιμη μορφή κοινωνικής μέριμνας ή πρόνοιας όταν το άτομο κριθεί ότι έχει μια μόνιμη αναπηρία τέτοιας βαρύτητας που αυτός ή αυτή δεν μπορεί πλέον να εργαστεί. Στην Ολλανδία για παράδειγμα το επίδομα ανεργίας είναι υποχρεωτικό. Σαν αποτέλεσμα το 97% των ανθρώπων με ΚΝΜ και χωρίς εργασία μετά τον τραυματισμό τους χρηματοδοτούνται, και οι περισσότεροι από αυτούς που έχουν εργασία συνεχίζουν να δικαιούνται ένα συμπληρωματικό κοινωνικό επίδομα βασισμένο στο 70% του μισθού τους προ της ΚΝΜ (127). Στον Καναδά εν αντιθέσει, ένα μακροπρόθεσμο σχέδιο Αναπηρικής Σύνταξης (ΑΣ) χρηματοδοτεί με 65%-70% του μισθού για 2 χρόνια μετά την κάκωση μέχρι να βρεθεί μια άλλη εργασία. Αν δεν υπάρχει πιθανότητα επιστροφής στην εργασία, αυτή η πληρωμή θα συνεχίσει για μια παρατεταμένη περίοδο και εν συνεχεία θα αντικατασταθεί από κάποια μορφή κοινωνικής πρόνοιας (152). Το αρνητικό των σχεδίων κοινωνικής μέριμνας 198
είναι ότι μπορεί να λειτουργήσουν ως «παγίδα επιδομάτων». Αυτό αναφέρεται σε μια κατάσταση όπου, επειδή τα επιδόματα και τα άλλα προγράμματα βασίζονται σε οικονομικά κριτήρια (ή απλά σταματούν όταν βρεθεί μόνιμη απασχόληση), οι άνθρωποι με ΚΝΜ που έχουν συνεχείς ανάγκες υγείας και αποκατάστασης, συμπεριλαμβανομένου και του κόστους των βοηθημάτων, είναι διστακτικοί στο να βρουν εργασία. Ο λόγος για αυτό είναι ότι το εισόδημα που θα λάβουν, μείον το κόστος της υγειονομικής περίθαλψης και τα άλλα κόστη που δημιουργούνται λόγω της ΚΝΜ, θα είναι μικρότερο από αυτά που θα λάβουν αν παραμείνουν στα προγράμματα προσωρινής αντικατάστασης εισοδήματος (184). Υπάρχουν αντικρουόμενα δεδομένα για το μέγεθος του προβλήματος. Μια μεγάλη μελέτη στις Η.Π.Α. έδειξε ότι, για τους άνεργους ανθρώπους με ΚΝΜ, τα υψηλότερα επιδόματα αναπηρίας ήταν ισχυρά συνδεδεμένα με μικρότερες πιθανότητες να εργαστούν τα ακόλουθα χρόνια (129). Οι δικαιούχοι ΑΣ δεν φαίνεται να τιμολογούν τον εαυτό τους εκτός της αγοράς εργασίας. Οι μισοί από αυτούς θα ήθελαν ένα μισθό στο 80% ή λιγότερο από τον τελευταίο μισθό τους πριν λάβουν την ΑΣ. Έχει υπολογιστεί ότι το 7% των μακροπρόθεσμων δικαιούχων ΑΣ μπορεί να επέστρεφαν στην εργασία αν ψάξουν για δουλειά και τους προσφερθεί με μια μέση κατανομή περί το 80% του τελευταίου τους μισθού (185). Η πιο άμεση, αν και δαπανηρή, λύση στην παγίδα των επιδομάτων είναι να τροποποιηθούν τα οικονομικά κριτήρια ούτως ώστε ένα άτομο με υψηλό κόστος υγειονομικής περίθαλψης και δαπάνες λόγω της αναπηρίας να διατηρεί ένα μέρος του επιδόματος και μετά την εύρεση εργασίας. Η αντιληπτή δυσκολία με αυτή τη λύση είναι ότι, όταν υπάρχει διαδεδομένη ανεργία, οι άνθρωποι θα προσπαθήσουν να εκμεταλλευτούν την αναπηρική μέριμνα για να εξασφαλίσουν το κόστος της υγειονομικής τους περίθαλψης. Ο OECD έχει προτείνει ριζικές αλλαγές που θα ωφελούσαν πολύ τους ανθρώπους με ΚΝΜ (102, 186), υποστηρίζοντας ότι τα επιδόματα αναπηρίας πρέπει να είναι ένα στοιχείο ενός μεγαλύτερου «πακέτου συμμετοχής», προσαρμοσμένο στις εξατομικευμένες ανάγκες και ικανότητες και σχεδιασμένο πρωταρχικά για να επιστρέψει τους ανθρώπους στην εργασία. Το πακέτο θα περιλάμβανε την αποκατάσταση, την επαγγελματική εκπαίδευση, υποστήριξη εύρεσης εργασίας, και οφέλη σε μετρητά
Κεφάλαιο 8
Εκπαίδευση και εργασία
ή σε είδος για την προετοιμασία για την επιστροφή στην εργασία. Το πακέτο πρέπει να συμπεριλαμβάνει άμεσα τους εργοδότες, στους οποίους πρέπει να δοθεί ουσιώδες κίνητρο για να προσλάβουν αυτούς τους εργαζόμενους και αντικίνητρο στο να τους απολύσουν αν βρεθεί αργότερα ότι χρειάζονται περαιτέρω προσαρμογές στον εργασιακό χώρο. Με αυτόν τον τρόπο, τα αναπηρικά επιδόματα θα ήταν ένα μεταβατικό εισόδημα και ένα βήμα προς την πλήρη απασχόληση. Οι αλλαγές που πρότεινε ο OECD όσο αφορά τις πολιτικές περί την εργασία και την αναπηρία πιθανόν να ωφελήσουν περισσότερο ανθρώπους με ΚΝΜ σε σχέση με τις άλλες ομάδες αναπηρίας. Τυπικά το άτομο με τραυματική ΚΝΜ είναι νέο και, πριν την κάκωση, είτε προετοιμαζόταν για μια καριέρα ή ξεκινούσε μια. Η επαγγελματική αποκατάσταση ως ένα παροδικό πακέτο σε σχέση με τις υπηρεσίες εργασίας, συμπληρώνει την πρόταση του OECD.
ρίες αυτοαπασχόλησης, αντικίνητρα και καθυστερήσεις που δημιουργούνται από κάποια σχέδια για επιδόματα κοινωνικής μέριμνας, έλλειψης προσαρμογών του εργασιακού χώρου και βοηθητικής τεχνολογίας, και παρανοήσεις των εργοδοτών και των συναδέλφων για το τι μπορεί και τι δεν μπορεί να κάνει κάποιος με ΚΝΜ. Πολλά άτομα και ομάδες- από οικογένειες, διοίκηση σχολείου, δάσκαλοι, ειδικοί επαγγελματικής αποκατάστασης και άλλοι ειδικοί έως κυβερνήσεις, εργοδότες και οργανισμοί για την ΚΝΜ – πρέπει να συμμετέχουν και να συντονίζονται μεταξύ τους για ξεπεράσουν τα εμπόδια στην πλήρη συμμετοχή στην εκπαίδευση και στην εργασία. Τα κρίσιμα σημεία που πρέπει να απευθυνθούν τα ενδιαφερόμενα μέρη συνοψίζονται στις παρακάτω συστάσεις.
Ενίσχυση της μορφωτικής συμμετοχής ■ Εξασφάλιση ότι νόμοι και πολιτικές εγγυώνται ότι τα παιδία με ΚΝΜ μπορούν να εγγραφούν και να παρακολουθήσουν σε κάθε επίπεδο της σχολικής εκπαίδευσης κατάλληλο για τις ανάγκες και τις δυνατότητες τους, σε ίσες βάσεις με τους άλλους. ■ Εξασφάλιση ότι οι εισαγωγικές στρατηγικές των κολεγίων και των πανεπιστημίων δεν αποκλείουν πιθανούς αιτούντες με ΚΝΜ και έχουν σε θέση στρατηγικές για να κάνουν το περιβάλλον προσβάσιμο. ■ Προγραμματισμός της επιστροφής στο σχολείο μετά από τον τραυματισμό, φέρνοντας κοντά το προσωπικό του σχολείου και της αποκατάστασης. ■ Εξασφάλιση της διαθεσιμότητας υπηρεσιών υγείας, αποκατάστασης και υποστήριξης, όπως χρειάζεται από το παιδί. ■ Εξασφάλιση ότι οι δάσκαλοι είναι εκπαιδευμένοι για να καλύψουν τις ανάγκες των παιδιών με αναπηρία. ■ Όπου δυνατόν, παροχή ομότιμης καθοδήγησης στο παιδί που επιστρέφει στο σχολείο ή κάνει μετάβαση μεταξύ επιπέδων μόρφωσης. ■ Να συμπεριλαμβάνονται τα παιδιά και οι γονείς στη λήψη των αποφάσεων. ■ Χρήση των οργανισμών της ΚΝΜ για να παρέχουν πληροφορίες και ενημέρωση για τα θέματα σχετικά με την ΚΝΜ. 199
Συμπεράσματα και συστάσεις Η μόρφωση είναι ένα βασικό βήμα προς την απασχόληση και στο να είσαι μέλος της κοινωνίας, αλλά για τα παιδιά με δισχιδή ράχη ή τους νέους ενήλικες που επιστρέφουν στο σχολείο μετά από ΚΝΜ, η πλήρης συμμετοχή στο γενικό εκπαιδευτικό σύστημα μπορεί να είναι δύσκολη λόγω εμποδίων και φυσικών και συμπεριφοράς. Είναι απαραίτητη η αλλαγή σε επίπεδο θεσμών και σε επίπεδο σχολείου για να απομακρύνουμε αυτά τα εμπόδια και για να παρέχουμε υπηρεσίες προσαρμογής και υποστήριξης έτσι ώστε κάθε παιδί και νέος ενήλικας με ΚΝΜ να λάβει τα πλήρη οφέλη της μόρφωσης. Μεγαλύτεροι ενήλικες, οι οποίοι μπορεί να θέλουν να επανεκπαιδευτούν για νέες δουλειές, επίσης χρειάζονται προσαρμοσμένη υποστήριξη και προσαρμογές από εκπαιδευτικά ιδρύματα, επαγγελματικά και τεχνικά σχολεία, κολέγια και πανεπιστήμια. Οι άνθρωποι με ΚΝΜ, όταν έχουν τα προσόντα, μπορούν να επιτελέσουν τα αναγκαία για πολλές δουλειές και να είναι παραγωγικοί. Ωστόσο η απόκτηση εργασίας και η διατήρηση της γίνονται συχνά δύσκολα λόγω: έλλειψης πρόσβασης σε σχετική μόρφωση, εκπαίδευση, επαγγελματικής αποκατάστασης και υπηρεσίες εύρεσης εργασία, έλλειψης πρόσβασης σε οικονομικούς πόρους για ευκαι-
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Εξασφάλιση της εργασίας και της οικονομικής ανεξαρτησίας ■ Θέσπιση, εφαρμογή και δημοσίευση αντιρατσιστικής αποτελεσματικής νομοθεσίας, ούτως ώστε οι εργοδότες να γνωρίζουν το καθήκον τους να μην κάνουν διακρίσεις και να παρέχουν εύλογες προσαρμογές. ■ Εξασφάλιση πρόσβασης σε επαγγελματική αποκατάσταση για βοηθήσουμε του ανθρώπους με ΚΝΜ να προετοιμαστούν για την εργασία και απευθυνθούν σε ψυχοκοινωνικές ανησυχίες.
■ Προώθηση της πρόσβασης σε μικροχρηματοδοτήσεις ή άλλες πηγές πίστωσης για ανθρώπους με ΚΝΜ που θέλουν να αναπτύξουν μια ευκαιρία αυτοαπασχόλησης. ■ Ανάλογα το υπόβαθρο, παροχή κοινωνικής μέριμνας που υποστηρίζει τα άτομα με ΚΝΜ και τις οικογένειες τους αλλά δεν λειτουργεί ως αντικίνητρο στην εργασία. ■ Συλλογή στατιστικής της εργασιακής εμπειρίας ανθρώπων με ΚΝΜ και άλλες αναπηρίες.
Βιβλιογραφία 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/disabilities-convention.htm, accessed 9 May 2012). WHO. World report on disability. Geneva, World Health Organization, 2011. UNESCO. Strong foundations: early childhood care and education. Education for All Global Monitoring Report, 2007. Paris, United Nations Educational, Scientific and Cultural Organization, 2006. Kochung JE. Role of higher education in promoting inclusive education: Kenyan perspective. Journal of Emerging Trends in Educational Research and Policy Studies, 2011, 2:144-149. Filmer D. Disability, poverty, and schooling in developing countries: results from 14 household surveys. The World Bank Economic Review, 2008, 22:141-163. doi: http://dx.doi.org/10.1093/wber/lhm021 UNESCO. Policy guidelines on inclusion in education. Paris, United Nations Educational, Scientific and Cultural Organization, 2009. Loeb ME, Eide AH, eds. Living conditions among people with activity limitations in Malawi: a national representative study. Oslo, SINTEF, 2004. Eide AH et al. Living conditions among people with disabilities in Zimbabwe: a representative, regional study. Oslo, SINTEF, 2003. Eide AH, van Rooy G, Loeb ME. Living conditions among people with disabilities in Namibia: a national, representative study. Oslo, SINTEF, 2003. Eide AH, Loeb ME, eds. Living conditions among people with activity limitations in Zambia. Oslo, SINTEF, 2006. VanLeit B, Channa S, Rithy B. Children with disabilities in rural Cambodia. An examination of functional status and implications for service delivery. Asia Pacific Disability Rehabilitation Journal, 2007, 18. Rieser R. Implementing inclusive education: A Commonwealth guide to implementing Article 24 of the UN Convention on the Rights of People with Disabilities. London, Commonwealth Secretariat, 2012. Zhang E. The protection of rights of people with disabilities in China. Asia Pacific Disability Rehabilitation Journal, 2007, 18:49-89. Croft A. Including disabled children in learning. Challenges in developing countries. Create Pathways to Access, Research Monograph, No. 26. Brighton, University of Sussex, 2010 (http://www.create-rpc.org/pdf_documents/PTA36.pdf, accessed 20 April 2012). McGinnis K, Lunn M. School re-entry after pediatric spinal cord injury. SCI Nursing, 2004, 21:222-223. PMID:15794424 DeVivo MJ, Chen Y. Trends in new injuries, prevalent cases, and aging with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:332-338. doi: http://dx.doi.org/10.1016/j.apmr.2010.08.031 Barf HA et!al. Educational career and predictors of type of education in young adults with spina bifida. International Journal of Rehabilitation Research, 2004, 27:45-52. doi: http://dx.doi.org/10.1097/00004356-200403000-00006 DeVivo MJ. Epidemiology of traumatic spinal cord injury: trends and future implications. Spinal Cord, 2012, 50:365-372. doi: http://dx.doi.org/10.1038/sc.2011.178
200
Κεφάλαιο 8
Εκπαίδευση και εργασία
19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. 32. 33. 34. 35. 36.
37. 38. 39. 40.
Hagen EM et!al. Traumatic spinal cord injury and concomitant traumatic brain injury: a cohort study. Acta Neurologica Scandinavica, Supplementum, 2010, 190:51-57. doi: http://dx.doi.org/10.1111/j.1600-0404.2010.01376.x Burmeister R et!al. Attention problems and executive functions in children with spina bifida and hydrocephalus. Child Neuropsychology, 2005, 11:265-283. doi: http://dx.doi.org/10.1080/092970490911324 Fletcher JM et al. Spinal lesion level in spina bifida: a source of neural and cognitive heterogeneity. Journal of Neurosurgery Pediatrics 3, 2005, 102:268–279. Wasson CM, Bannister CM, Ward GS. Factors affecting the school placement of children with spina bifida. European Journal of Pediatric Surgery, 1992, 2 Suppl. 1:29-34. doi: http://dx.doi.org/10.1055/s-2008-1063496 Bellin MH et!al. Correlates of depressive and anxiety symptoms in young adults with spina bifida. Journal of Pediatric Psychology, 2010, 35:778-789. Epub: 30 October 2009 doi: http://dx.doi.org/10.1093/jpepsy/jsp094 Bowman RM et!al. Spina bifida outcome: a 25-year prospective. Pediatric Neurosurgery, 2001, 34:114-120. doi: http://dx.doi.org/10.1159/000056005 Sawin KJ, Betz CL, Linroth R. Gaps and opportunities: an agenda for further research, services, and program development in spina bifida. Pediatric Clinics of North America, 2010, 57:1041-1057. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.020 Graham P, Weingarden S, Murphy P. School reintegration: a rehabilitation goal for spinal cord injured adolescents. Rehabilitation Nursing, 1991, 16:122-127. doi: http://dx.doi.org/10.1002/j.2048-7940.1991.tb01196.x Mulcahey MJ. Returning to school after a spinal cord injury: perspectives from four adolescents. The American Journal of Occupational Therapy, 1992, 46:305-312. doi: http://dx.doi.org/10.5014/ajot.46.4.305 Castle R. An investigation into the employment and occupation of patients with a spinal cord injury. Paraplegia, 1994, 32:182-187. doi: http://dx.doi.org/10.1038/sc.1994.33 Dudgeon BJ, Massagli TL, Ross BW. Educational participation of children with spinal cord injury. The American Journal of Occupational Therapy, 1997, 51:553-561. doi: http://dx.doi.org/10.5014/ajot.51.7.553 Knight A et al. The school lives of children and young people with a spinal cord injury. Report to the Back-Up Team. London, Thomas Coram Research Unit, University of London, 2008. Newman L, Malouf D. The post-high school outcomes of youth with disabilities up to 4 years after high school. Menlo Park, CA, SRI International, 2009. Massagli TL, Dudgeon BJ, Ross BW. Educational performance and vocational participation after spinal cord injury in childhood. Archives of Physical Medicine and Rehabilitation, 1996, 77:995-999. doi: http://dx.doi.org/10.1016/S0003-9993(96)90058-1 OECD. Inclusion of students with disabilities in tertiary education and employment, education and training policy. Paris, Organisation for Economic Co-operation and Development, 2011. Momin AKM. Impact of services for people with spinal cord lesion on economic participation. Asia Pacific Disability Rehabilitation Journal, 2004, 15:53-67. OECD. Students with disabilities, learning difficulties and disadvantages: policies, statistics and indicators. Paris, Organisation for Economic Co-operation and Development, 2007. Bines H, Lei P, editors. Education’s missing millions: including disabled children in education through EFA FTI processes and national sector plans. Milton Keynes, World Vision UK, 2007 (http://www.worldvision.org.uk/upload/pdf/Education%27s_ Missing_Millions__Main_Report.pdf, accessed 16 May 2012). UNESCO. Guidelines for inclusion: Ensuring access to Education for All. Paris, United Nations Educational, Scientific and Cultural Organization, 2005. Dube AK. The role and effectiveness of disability legislation in South Africa. London, Disability Knowledge and ResearchProgramme, 2005 (http://www.dfid.gov.uk/r4d/PDF/Outputs/Disability/PolicyProject_legislation_sa.pdf, accessed 20 April 2012). Engelbrecht P, Oswald M, Forlin C. Promoting the implementation of inclusive education in primary schools in South Africa. British Journal of Special Education, 2006, 33:121-129. doi: http://dx.doi.org/10.1111/j.1467-8578.2006.00427.x Liptak GS et al. Youth with spina bifida and transitions. Health and social participation in a nationally represented sample. The Journal of Pediatrics, 2010, 157:584–588.e1.
201
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
41. 42. 43. 44. 45. 46.
47. 48. 49. 50. 51. 52. 53.
54. 55. 56.
57. 58. 59. 60. 61.
Holmbeck GN et!al. Family perspective: how this product can inform and empower families of youth with spina bifida. Pediatric Clinics of North America, 2010, 57:919-934. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.012 O’Mahar K et!al. A camp-based intervention targeting independence among individuals with spina bifida. Journal of Pediatric Psychology, 2010, 35:848-856. doi: http://dx.doi.org/10.1093/jpepsy/jsp125 van Mechelen MC et!al. Work participation among young adults with spina bifida in the Netherlands. Developmental Medicine and Child Neurology, 2008, 50:772-777. doi: http://dx.doi.org/10.1111/j.1469-8749.2008.03020.x Zukerman JM. Adolescent predictors of emerging adulthood milestones in youth with spina bifida. Journal of Pediatric Psychology, 2011, 36:265-276. doi: http://dx.doi.org/10.1093/jpepsy/jsq075 PMID:20855288 Miles M. Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society, 2002, 17:643-658. doi: http://dx.doi.org/10.1080/0968759022000010425 Webster G, Kennedy P. Addressing children’s needs and evaluating rehabilitation outcome after spinal cord injury: the child needs assessment checklist and goal-planning program. The Journal of Spinal Cord Medicine, 2007, 30 Suppl. 1:S140-S145. PMID:17874699 Anderson CJ et!al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine, 2004, 27 Suppl. 1:S98-S106. PMID:15503711 Anderson CJ, Vogel LC. Employment outcomes of adults who sustained spinal cord injuries as children or adolescents. Archives of Physical Medicine and Rehabilitation, 2002, 83:791-801. doi: http://dx.doi.org/10.1053/apmr.2002.32742 Vogel LC et!al. Unique issues in pediatric spinal cord injury. Orthopedic Nursing, 2004, 23:300-308. doi: http://dx.doi.org/10.1097/00006416-200409000-00004 Jerlinder K, Danermark B, Gill P. Swedish primary-school teachers’ attitudes to inclusion – the case of PE and pupils with physical disabilities. European Journal of Special Needs Education, 2010, 25:45-57. doi: http://dx.doi.org/10.1080/08856250903450830 Asbjørnslett M, Hemmingsson H. Participation at school as experienced by teenagers with physical disabilities. Scandinavian Journal of Occupational Therapy, 2008, 15:153-161. doi: http://dx.doi.org/10.1080/11038120802022045 House LA et!al. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives. Spinal Cord, 2009, 47:882-886. doi: http://dx.doi.org/10.1038/sc.2009.64 Roessler RT, Hennessey ML, Rumrill PD. Strategies for improving career services for postsecondary students with disabilities: results of a focus group study of key stakeholders. Career Development for Exceptional Individuals, 2007, 30:158-170. doi: http://dx.doi.org/10.1177/08857288070300030501 Shem K et!al. Return to work and school: a model mentoring program for youth and young adults with spinal cord injury. Spinal Cord, 2011, 49:544-548. doi: http://dx.doi.org/10.1038/sc.2010.166 Houchins DE. Post-secondary transitions assistive technology barriers and facilitators during secondary and post-secondary transitions. Career Development for Exceptional Individuals, 2001, 24:73-88. doi: http://dx.doi. org/10.1177/088572880102400106 National Center on Secondary Education and Transition (NCSET). Current challenges facing the future of secondary education and transition services for youth with disabilities in the United States. US Department of Education, Office of Special Education Program, Washington, DC, 2004. Scarborough, J., Gilbride, D. Developing relationships with rehabilitation counselors to meet the transition needs of students with disabilities. Professional School Counseling. 2006 10: 25–33. Dutta A, Schiro-Geist C, Kundu M. Coordination of postsecondary transition services for students with disabilities. Journal of Rehabilitation, 2009, 75:10-17. Taylor M, Baskett M, Wren C. Managing the transition to university for disabled students. Education + Training, 2010, 52:165-175. Lewin KM. Improving access, equity and transitions in education: creating a research agenda. Create Pathways to Access, Research Monograph, No. 1. Brighton, University of Sussex, 2007. Vosloo S-M. The functioning of primary school learners with paraplegia/paraparesis in mainstream schools in the Western Cape, South Africa. An exploratory study. Disability and Rehabilitation, 2009, 31:23-31. doi: http://dx.doi.org/10.1080/0963828080 2280643
202
Κεφάλαιο 8
Εκπαίδευση και εργασία
62. 63. 64.
65. 66. 67. 68. 69.
70. 71. 72. 73. 74. 75.
76. 77. 78. 79. 80. 81. 82. 83.
Ong LC, Lim YN, Sofiah A. Malaysian children with spina bifida: relationship between functional outcome and level of lesion. Singapore Medical Journal, 2002, 43:012−017. Masangwa. Disabled children can and should go to school. The Africa Report, 2010 (http://theafricareport.com/ Blog/ index.php?trackback/12, accessed 15.5.2012). Losinsky LO et!al. An investigation into the physical accessibility to wheelchair bound students of an Institution of Higher Education in South Africa. Disability and Rehabilitation, 2003, 25:305-308. doi: http://dx.doi.org/10.1080/ 0963828021000043743 PMID:12745953 Abend AC. Planning and designing for students with disabilities. National Clearinghouse for Educational Facilities, 2001 (http://www.ncef.org/pubs/accessibility.pdf, accessed 14 November 2012). Pivik J, McComas J, Laflamme M. Barriers and facilitators to inclusive education. Exceptional Children, 2002, 69:97-107. Monk J, Wee J. Factors shaping attitudes toward physical disability and availability of rehabilitation support services for disabled persons in rural Kenya. Asia Pacific Disability Rehabilitation Journal, 2008, 19:93-113. OECD. Accessibility Programme and School Restoration in Lisbon. PEB Exchange Paris: Organisation for Economic Co-operation and Development, 2006. Cook A et!al. School-based use of a robotic arm system by children with disabilities. IEEE Transactions on Neural Systems and Rehabilitation Engineering, 2005, 13:452-460. PMID:16425826 doi: http://dx.doi.org/10.1109/ TNSRE.2005.856075 PMID:16425826 Pilot SCI. Making equipment decisions after spinal cord injury. A peer support discussion guide. Toronto, Toronto Rehabilitation Institute, 2003 (http://www.scipilot.com/_g/expe_g/PeerGuide.pdf, accessed 20 April 2012). Hasselbring TS, Glaser CHW. Use of computer technology to help students with special needs. The Future of Children: Children and Computer Technology, 2000, 10:102-122. doi: http://dx.doi.org/10.2307/1602691 PMID:11255702 Kemp CE, Hourcade JJ, Parette HP. Building and initial information base. Assistive technology funding resources for schoolaged students with disabilities. Journal of Special Education Technology, 2000, 15:4. Government of United Kingdom. Disabled students’ allowances. London, United Kingdom (http://www.gov.uk/disabledstudentsallowances-dsas, accessed 11 April 2013). Disability Alliance. Disability Alliance Northern Ireland. London, United Kingdom. (http://www.nidirect.gov.uk/disabilityalliance, accessed 11 April 2013). Peters S. Inclusive education. An EFA strategy for all children. World Bank. Human Development Network. 2004 (http:// siteresources.worldbank.org/EDUCATION/Resources/278200-1099079877269/54766410990 79993288/InclusiveEdu_efa_strategy _for_children.pdf, accessed 11 July 2012). Meijer C. Financing of special needs education. A seventeen country study of the relation between financing of special needs education and integration Middelfart: Denmark: European Agency for Development in Special Needs Education, 1999. Krause JS, Carter RE. Risk of mortality after spinal cord injury: relationship with social support, education, and income. Spinal Cord, 2009, 47:592-596. doi: http://dx.doi.org/10.1038/sc.2009.15 Whalley Hammel K. Experience of rehabilitation following spinal cord injury: a meta-synthesis of qualitative findings. Spinal Cord, 2007, 45:260-274. PMID:17310257 Back Up. Back Up Trust (http://www.backuptrust.org.uk/what-we-do/mentoring, accessed 5 May 2013). Anderson CJ et!al. Anxiety and depression in children and adolescents with spinal cord injuries. Developmental Medicine and Child Neurology, 2009, 51:826-832. doi: http://dx.doi.org/10.1111/j.1469-8749.2009.03268.x Krause JS, Broderick LA. 25-year longitudinal study of the natural course of aging after spinal cord injury. Spinal Cord, 2005, 43:349356. doi: http://dx.doi.org/10.1038/sj.sc.3101726 Nel N et!al. A comparative perspective on teacher attitude-constructs that impact on inclusive education in South Africa and Sweden. South African Journal of Education, 2011, 31:74-90. Huang HH, Diamond KE. Early childhood teachers’ ideas about including children with disabilities in programmes designed for typically developing children. International Journal of Disability Development and Education, 2009, 56:169-182. doi: http://dx.doi.org/10.1080/10349120902868632
203
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Mulvihill BA, Cotton JN, Gyaben SL. Best practices for inclusive child and adolescent out-of-school care. A review of the literature. Family & Community Health, 2004, 27:52-64. 85. Mukhopadhay S, Molosiwa SM. Influence of an introductory special education course on attitude change of PGDE students of University of Botswana. Asia Pacific Disability Rehabilitation Journal, 2010, 21. 86. Wehbi S. The challenges of inclusive education in Lebanon. Disability & Society, 2006, 21:331-343. doi: http://dx.doi. org/10.1080/09687590600679980 87. UNESCO. Toolkit for creating inclusive learning-friendly environments. Paris, United Nations Educational, Scientific and Cultural Organization, 2009. 88. OECD. OECD toolkit on teaching for diversity.Paris, OECD, Centre for Educational Research and Innovation (www.oecd.org/edu/ted/toolkit, accessed 18 May 2012). 89. Sharma, U, Forlin, C, Loreman, T. Impact of training on pre-service teachers’ attitudes and concerns about inclusive education and sentiments about persons with disabilities. Disability & Society, 2010, 23:772–785. 90. Diaz-Greenberg R et!al. What teachers need to know about the struggle for self-determination (conscientization) and self-regulation: adults with disabilities speak about their education experiences. Teaching and Teacher Education, 2000, 16:873-887. doi: http://dx.doi.org/10.1016/S0742-051X(00)00032-9 91. Buckup S. The price of exclusion. The economic consequences of excluding people with disabilities from the world of work. Employment Working Paper, No. 43. Geneva, International Labour Organization, 2009. 92. Krause JS et!al. Employment after spinal cord injury: differences related to geographic region, gender and race. Archives of Physical Medicine and Rehabilitation, 1998, 79:615-624. doi: http://dx.doi.org/10.1016/ S0003-9993(98)90033-8 93. Krause JS. Adjustment to life after spinal cord injury: a comparison among three participant groups based on employment status. Rehabilitation Counseling Bulletin, 1992, 35:218-229. 94. Crisp R. Vocational decision making by sixty spinal cord injury patients. Paraplegia, 1992, 30:420-424. doi: http://dx.doi.org/10.1038/sc.1992.92 95. Chapin M, Kewman D. Factors affecting employment following spinal cord injury: a qualitative study. Rehabilitation Psychology, 2001, 46:400-416. doi: http://dx.doi.org/10.1037/0090-5550.46.4.400 96. Ottomanelli L, Lind L. A review of critical factors related to employment following spinal cord injury: implications for research and vocational services. The Journal of Spinal Cord Medicine, 2009, 32:503-531. PMID:20025147 97. Krause JS, Saunders L, DeVivo MJ. Income and risk of mortality after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:339-345. doi: http://dx.doi.org/10.1016/j.apmr.2010.09.032 98. Hess DW et!al. Predictors for return to work after spinal cord injury: a 3-year multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2000, 81:359-363. doi: http://dx.doi.org/10.1016/S0003-9993(00)90084-4 99. Krause JS, Anson C. Adjustment after spinal cord injury: relationship to participation in employment of educational activities. Rehabilitation Counseling Bulletin, 1997, 40:202-214. 100. Meade MA et!al. The influence of secondary conditions on job acquisition and retention in adults with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:425-432. doi: http://dx.doi.org/10.1016/j.apmr.2010.10.041 101. Young AE, Murphy GC. Employment status after spinal cord injury (1992–2005): A review with implications for interpretation, evaluation, further research, and clinical practice. International Journal of Rehabilitation Research, 2009, 32:1-11. doi: http://dx.doi.org/10.1097/MRR.0b013e32831c8b19 102. OECD. Transforming disability into ability. Policies to promote work and income security for disabled people. Paris, Organisation for Economic Co-operation and Development, 2003. 103. Lidal IB, Huynh TK, Biering-Sorensen F. Return to work following spinal cord injury: A review. Disability and Rehabilitation, 2007, 29:1341-1375. doi: http://dx.doi.org/10.1080/09638280701320839 PMID:17729082 104. Lidal IB et!al. Employment of persons with spinal cord lesions injured more than 20 years ago. Disability and Rehabilitation, 2009, 31:2174-2184. doi: http://dx.doi.org/10.3109/09638280902946952 105. Ramakrishnan K et!al. Return to work after spinal cord injury in Malaysia. Spinal Cord, 2011, 49:812-816. doi: http://dx.doi.org/10.1038/sc.2010.186
84.
204
Κεφάλαιο 8
Εκπαίδευση και εργασία
106. Hansen CH, Mahmud I, Bhuiyan AJ. Vocational reintegration of people with spinal cord lesion in Bangladesh – an observational study based on a vocational training project at CRP. Asia Pacific Disability Rehabilitation Journal, 2007, 18:63 75. 107. Gupta N, Solomon J, Raja K. Employment after paraplegia in India: a postal survey. Spinal Cord, 2011, 49:806-811. doi: http://dx.doi.org/10.1038/sc.2011.1 108. Levy LF et!al. Problems, struggles and some success with spinal cord injury in Zimbabwe. Spinal Cord, 1998, 36:213-218. doi: http://dx.doi.org/10.1038/sj.sc.3100574 109. Samuelkamaleshkumar S et!al. Community reintegration in rehabilitated South Indian persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2010, 91:1117-1121. doi: http://dx.doi.org/10.1016/j.apmr.2010.04.005 110. Gerhardt CA et!al. Educational and occupational outcomes among survivors of childhood cancer during the transition to emerging adulthood. Journal of Developmental and Behavioral Pediatrics, 2007, 28:448-455. doi: http://dx.doi.org/10.1097/DBP.0b013e31811ff8e1 111. Frieden L, Winnegar AJ. Opportunities for research to improve employment for people with spinal cord injuries. Spinal Cord, 2012, 50:379-381. doi: http://dx.doi.org/10.1038/sc.2012.38 112. Yasuda S et!al. Return to work after spinal cord injury: a review of recent research. NeuroRehabilitation, 2002, 17:177-186. PMID:12237497 113. Al-Khodairy AT, El Masry WS. Vocational rehabilitation and spinal cord injuries. In: Gobelet C, Franchignoni F, eds. Vocational rehabilitation. Collection de L’Académie Européenne de Médecine de Réadaptation. Paris, Springer-Verlag France, 2006, 165−184. doi: http://dx.doi.org/10.1007/2-287-29745-6_11 114. Anderson D et!al. Determinants of return to work among spinal cord injury patients: a literature review. Journal of Vocational Rehabilitation, 2007, 27:57-68. 115. Noreau L et al. Work and employment. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010 (http://www.scireproject.com/sites/default/files/ work_and_employment. pdf, accessed 12 May 2012). 116. Krause JS et!al. Employment after spinal cord injury: an analysis of cases from the Model Spinal Cord Injury Systems. Archives of Physical Medicine and Rehabilitation, 1999, 80:1492-1500. doi: http://dx.doi.org/10.1016/S0003-9993(99)90263-0 117. Valtonen K et!al. Work participation among persons with traumatic spinal cord injury and meningomyelocele. Journal of Rehabilitation Medicine, 2006, 38:192-200. doi: http://dx.doi.org/10.1080/16501970500522739 118. Marini I et!al. Vocational rehabilitation service patterns related to successful competitive employment outcomes of persons with spinal cord injury. Journal of Vocational Rehabilitation, 2008, 28:1-13. 119. Krause JS et!al. Prediction of postinjury employment and percentage of time worked after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2012, 93:373-375. doi: http://dx.doi.org/10.1016/j.apmr.2011.09.006 120. Phillips VL, Hunsaker AE, Florence CS. Return to work and productive activities following a spinal cord injury: the role of income and insurance. Spinal Cord, 2012, 50:623–626 (E-pub ahead of print). doi: http://dx.doi.org/10.1038/sc.2012.22 121. Krause JS, Terza JV, Dismuke C. Earnings among people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:1474-1481. doi: http://dx.doi.org/10.1016/j.apmr.2007.12.040 122. Meade MA et!al. Vocational rehabilitation services for individuals with spinal cord injury. Journal of Vocational Rehabilitation, 2006, 25:3-11. 123. Arango-Lasprilla JC et al. Race, ethnicity, and employment outcomes 1, 5, and 10 years after spinal cord injury: a longitudinal analysis. Journal of Physical Medicine & Rehabilitation: the journal of injury, function, and rehabilitation, 2010, 2:901–910. 124. Wehman P et!al. Employment satisfaction of individuals with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2000, 79:161-169. doi: http://dx.doi.org/10.1097/00002060-200003000-00009 125. Krause JS. Aging and self-reported barriers to employment after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2001, 6:102-115. doi: http://dx.doi.org/10.1310/1WMH-35Q6-12B5-3WMN 126. Benavente A et!al. Assessment of disability in spinal cord injury. Disability and Rehabilitation, 2003, 25:1065-1070. doi: http://dx.doi.org/10.1080/0963828031000137775
205
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
127. Tomassen PC, Post MW, van Asbeck FW. Return to work after spinal cord injury. Spinal Cord, 2000, 38:51-55. doi: http:// dx.doi.org/10.1038/sj.sc.3100948 128. Krause JS. Years to employment after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2003, 84:1282-1289. doi: http://dx.doi.org/10.1016/S0003-9993(03)00265-X 129. Pflaum C et!al. Worklife after traumatic spinal cord injury. The Journal of Spinal Cord Medicine, 2006, 29:377-386. PMID:17044388 130. Krause JS, Coker JL. Aging after spinal cord injury: a 30-year longitudinal study. The Journal of Spinal Cord Medicine, 2006, 29:371376. PMID:17044387 131. Kurtaran A et!al. Occupation in spinal cord injury patients in Turkey. Spinal Cord, 2009, 47:709-712. doi: http://dx.doi. org/10.1038/sc.2009.79 132. Murphy GC et!al. Predicting employment status at 2 years postdischarge from spinal cord injury rehabilitation. Rehabilitation Psychology, 2011, 56:251-256. doi: http://dx.doi.org/10.1037/a0024524 133. Cifu DX, Wehman P, McKinley WO. Determining impairment following spinal cord injury. Physical Medicine and Rehabilitation Clinics of North America, 2001, 12:603-612. PMID:11478191 134. Kennedy P et!al. A multi-centre study of the community needs of people with spinal cord injuries: the first 18 months. Spinal Cord, 2010, 48:15-20. doi: http://dx.doi.org/10.1038/sc.2009.65 135. Sekaran P et!al. Community reintegration of spinal cord-injured patients in rural south India. Spinal Cord, 2010, 48:628-632. doi: http://dx.doi.org/10.1038/sc.2010.6 136. J ang Y, Wang YH, Wang JD. Return to work after spinal cord injury in Taiwan: the contribution of functional independence. Archives of Physical Medicine and Rehabilitation, 2005, 86:681-686. doi: http://dx.doi.org/10.1016/j.apmr.2004.10.025 137. Escorpizo R et!al. A conceptual definition of vocational rehabilitation based on the ICF: building a shared global model. Journal of Occupational Rehabilitation, 2011, 21:126-133. doi: http://dx.doi.org/10.1007/s10926-011-9292-6 138. Gard G, Soderberg S. How can a work rehabilitation process be improved? A qualitative study from the perspective of social insurance officers. Disability and Rehabilitation, 2004, 26:299-305. doi: http://dx.doi.org/ 10.1080/09638280310001647624 139. DeSouza M et!al. The Papworth early rehabilitation programme: vocational outcomes. Disability and Rehabilitation, 2007, 29:671677. doi: http://dx.doi.org/10.1080/09638280600926538 140. Conroy L, McKenna K. Vocational outcome following spinal cord injury. Spinal Cord, 1999, 37:624-633. doi: http://dx.doi. org/10.1038/sj.sc.3100904 141. Schonherr MC et!al. Vocational perspectives after spinal cord injury. Clinical Rehabilitation, 2005, 19:200-208. doi: http:// dx.doi.org/10.1191/0269215505cr845oa PMID:15759536 142. Marnetoft SU et!al. Factors associated with successful vocational rehabilitation in a Swedish rural area. Journal of Rehabilitation Medicine, 2001, 33:71-78. doi: http://dx.doi.org/10.1080/165019701750098902 143. Targett P, Wehman P, Young C. Return to work for persons with spinal cord injury: designing work supports. NeuroRehabilitation, 2004, 19:131-139. PMID:15201472 144. Yeager P et!al. Assistive technology and employment: experiences of Californians with disabilities. Work (Reading, Mass.), 2006, 27:333-344. PMID:17148870 145. Burns SM et!al. Psychosocial predictors of employment status among men living with spinal cord injury. Rehabilitation Psychology, 2010, 55:81-90. doi: http://dx.doi.org/10.1037/a0018583 146. Krause JS, Broderick LA. Relationship of personality and locus of control with employment outcomes among participants with spinal cord injury. Rehabilitation Counseling Bulletin, 2006, 49:111-114. doi: http://dx.doi.org/10.1177/ 00343552060490020201 147. Chan SKK, Man DWK. Barriers to returning to work for people with spinal cord injuries: a focus group study. Work (Reading, Mass.), 2005, 25:325-332. PMID:16340109 148. Lin M-R et!al. A prospective study of factors influencing return to work after traumatic spinal cord injury in Taiwan. Archives of Physical Medicine and Rehabilitation, 2009, 90:1716-1722. doi: http://dx.doi.org/10.1016/j.apmr.2009.04.006 PMID:19801061 149. Pearcey TE, Yoshida KK, Renwick RM. Personal relationships after a spinal cord injury. International Journal of Rehabilitation Research, 2007, 30:209-219. doi: http://dx.doi.org/10.1097/MRR.0b013e32829fa3c1
206
Κεφάλαιο 8
Εκπαίδευση και εργασία
150. Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord, 2010, 48:73-79. doi: http://dx.doi.org/10.1038/sc.2009.92 151. Targett P et!al. Functional vocational assessment for individuals with spinal cord injury. Journal of Vocational Rehabilitation, 2005, 22:149-161. 152. Jongbloed L et!al. Employment after spinal cord injury: the impact of government policies in Canada. Work (Reading, Mass.), 2007, 29:145-154. PMID:17726290 153. Wehmeyer ML et!al. The self-determined career development model: a pilot study. Journal of Vocational Rehabilitation, 2003, 19:7987. 154. New Zealand Spinal Trust. Kaleidoscope (http://www.nzspinaltrust.org.nz/rehab.asp, accessed 11 April 2013). 155. Inge K et!al. Supported employment and assistive technology for persons with spinal cord injury: three illustrations of successful work supports. Journal of Vocational Rehabilitation, 1998, 10:141-152. doi: http://dx.doi.org/10.1016/S1052-2263(98)00010-5 156. CRP-Bangladesh. Centre for the rehabilitation of the paralysed. (http://www.crp-bangladesh. org/index.php?option=com_ content&view=article&id=69&Itemid=60, accessed 11 April 2013). 157. Hagner D, Cooney B. Building employer capacity to support employees with severe disabilities in the workplace. Work (Reading, Mass.), 2003, 21:77-82. PMID:12897393 158. Gilbride D et!al. Identification of the characteristic of work environments and employers open to hiring and accommodating people with disabilities. Rehabilitation Counseling Bulletin, 2003, 46:130-137. doi: http://dx.doi.org/10.1177/003435 52030460030101 159. Boyland A, Burchardt T. Barriers to self-employment for disabled people. Report prepared for the Small Business Service. London, 2002 (http://www.bis.gov.uk/files/file38357.pdf, accessed 16 May 2012). 160. Barf HA et!al. Restrictions in social participation in young adults with spina bifida. Disability and Rehabilitation, 2009, 31:921-927. doi: http://dx.doi.org/10.1080/09638280802358282 161. Ravaud JF, Madiot B, Ville I. Discrimination towards disabled people seeking employment. Social Science & Medicine, 1992, 35:951958. doi: http://dx.doi.org/10.1016/0277-9536(92)90234-H 162. McMahon BT et!al. Workplace discrimination and spinal cord injury: the national EEOC ADA research project. Journal of Vocational Rehabilitation, 2005, 23:155-162. 163. Hernandez B, Keys L, Balcazar F. Employer attitudes toward workers with disabilities and their ADA employment rights: a literature review. Journal of Rehabilitation, 2000, 66:4-16. 164. Gilbride D et al. Employers’ attitudes toward hiring persons with disabilities and vocational rehabilitation services. Journal of Rehabiltation, 2000, 66:17–23. 165. McNeal DR, Somerville NJ, Wilson DJ. Work problems and accommodations reported by persons who are postpolio or have a spinal cord injury. Assistive Technology, 1999, 11:137-157. doi: http://dx.doi.org/10.1080/10400435.1999. 10131998 166. Sabata D et!al. A retrospective analysis of recommendations for workplace accommodations for persons with mobility and sensory limitations. Assistive Technology, 2008, 20:28-35. doi: http://dx.doi.org/10.1080/10400435.2008. 10131929 167. JAN. Workplace accommodations: low cost, high impact. Morgantown, WV, Job Accommodation Network, updated 2011, (http://AskJAN.org/media/LowCostHighImpact.doc, accessed 16 May 2012). 168. Somerville N, Wilson DJ, Bruyere SM. Employing and accommodating individuals with spinal cord injuries. Ithaca, NY, Cornel University, 2000 (http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1013&context=edicollect, accessed 16 May 2012). 169. McKinley W et!al. Assistive technology and computer adaptations for individuals with spinal cord injury. NeuroRehabilitation, 2004, 19:141-146. PMID:15201473 170. Bricout JC. Using telework to enhance return to work outcomes for individuals with spinal cord injuries. NeuroRehabilitation, 2004, 19:147-159. PMID:15201474 171. Hedrick B et!al. Employment issues and assistive technology use for persons with spinal cord injury. Journal of Rehabilitation Research and Development, 2006, 43:185-198. doi: http://dx.doi.org/10.1682/JRRD.2005.03.0062 172. Priebe MM et!al. Spinal cord injury medicine. 6: Economic and societal issues in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl. 1:S84-S88. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.005
207
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
173. Driscoll MP, Rodger SA, deJonge DM. Factors that prevent or assist the integration of assistive technology into the workplace for people with spinal cord injuries: perspectives of the users and their employers and co-workers. Journal of Vocational Rehabilitation, 2001, 16:53-66. 174. Allen K, Blascovich J. The value of service dogs for people with severe ambulatory disabilities. A randomized controlled trial. Journal of the American Medical Association, 1996, 275:1001-1006. doi: http://dx.doi.org/10.1001/ jama.1996.03530370039028 175. Malacrida C. Income support policy in Canada and the UK: different, but much the same. Disability & Society, 2010, 25:673-686. doi: http://dx.doi.org/10.1080/09687599.2010.505739 176. Cramm JM, Finkenflügel H. Exclusion of disabled people from microcredit in Africa and Asia: a literature review. Asian Pacific Disability Rehabilitation Journal, 2008, 19:15-33. 177. de Klerk T. Funding for self-employment of people with disabilities. Grants, loans, revolving funds or linkage with microfinance programmes. Leprosy Review, 2008, 79:92-109. PMID:18540240 178. Handicap International. Good practices for the economic inclusion of people with disabilities in developing countries. Funding mechanisms for self-employment. Handicap International, 2006 (http://www.handicap-international.org.uk/Resources, accessed 11 April 2013). 179. Rowell D, Connelly LB. Personal assistance, income and employment: the spinal injuries survey instrument (SISI) and its application in a sample of people with quadriplegia. Spinal Cord, 2008, 46:417-424. doi: http://dx.doi.org/10.1038/sj.sc.3102157 180. Scovil CY et!al. Follow-up study of spinal cord injured patients after discharge from inpatient rehabilitation in Nepal in 2007. Spinal Cord, 2012, 50:232-237. doi: http://dx.doi.org/10.1038/sc.2011.119 181. Kassah AK. Begging as work: a study of people with mobility difficulties in Accra, Ghana. Disability & Society, 2008, 23:163-170. doi: http://dx.doi.org/10.1080/09687590701841208 182. Marriott A, Gooding K. Social assistance and disability in developing countries. Haywards Heath, Sightsavers International, 2007. 183. Singh R, Dhankar SS, Rohilla R. Quality of life of people with spinal cord injury in Northern India. International Journal of Rehabilitation Research, 2008, 31:247-251. doi: http://dx.doi.org/10.1097/MRR.0b013e3282fb7d25 184. Atwell S, Hudson LM. Social security legislation creates Ticket to Work and Work Incentives Improvement Act. Topics in Spinal Cord Injury Rehabilitation, 2004, 9:26-32. doi: http://dx.doi.org/10.1310/LU8A-C1PL-URT1-K0N2 185. Mitra S. Disability and social safety nets in developing countries. International Journal of Disability Studies, 2006, 2:43 88. 186. OECD. Sickness, disability and work: breaking the barriers. A synthesis of findings across OECD countries. Paris, Organisation for Economic Co-operation and Development, 2010.
208
Κεφάλαιο 9 Ο δρόμος προς τα εμπρός: συστάσεις
209
210
Ο δρόμος προς τα εμπρός: συστάσεις Η κάκωση νωτιαίου μυελού (ΚΝΜ) είναι μια κατάσταση πολύπλοκη από ιατρικής πλευράς και προκαλεί διαταραχές στη ζωή. Η ΚΝΜ έχει δαπανηρές συνέπειες, τόσο για τα άτομα όσο και την κοινωνία. Άνθρωποι εγκαταλείπονται, αποκλείονται από το σχολείο και μειώνονται οι πιθανότητές τους για εργασία. Το χειρότερο όμως από όλα είναι η ύπαρξη κινδύνου πρόωρου θανάτου. Η ΚΝΜ είναι μια πρόκληση για τη δημόσια υγεία και τα ανθρώπινα δικαιώματα. Ωστόσο, με την κατάλληλη πολιτική, όπως αποδεικνύεται από αυτή την έκθεση, είναι δυνατόν κάποιος με ΚΝΜ να ζήσει, να αναπτυχθεί και να συμμετέχει οπουδήποτε στον κόσμο. Οι άνθρωποι με ΚΝΜ είναι άτομα με αναπηρία και δικαιούνται τα ίδια ανθρώπινα δικαώματα και σεβασμό με όλους τους ανθρώπους με αναπηρίες. Μόλις εκπληρωθούν οι άμεσες ανάγκες υγείας τους, κοινωνικοί και περιβαλλοντικοί φραγμοί είναι τα κύρια εμπόδια για την επιτυχή λειτουργικότητα και την ενσωμάτωση των ατόμων με ΚΝΜ. Διασφαλίζοντας ότι οι υπηρεσίες υγείας, η εκπαίδευση, οι μεταφορές και η εργασιακή απασχόληση είναι διαθέσιμα και προσβάσιμα σε άτομα με ΚΝΜ, όπως και σε άλλα άτομα με αναπηρίες, μπορεί να γίνει η διαφορά μεταξύ της αποτυχίας και της επιτυχίας. Η ΚΝΜ πάντα θα αλλάζει τη ζωή ενός ατόμου αλλά δε χρειάζεται να είναι μία τραγωδία, ούτε ένα βαρύ φορτίο.
9
Σημεία κλειδιά 1. Η κάκωση του νωτιαίου μυελού αποτελεί σημαντικό θέμα δημόσιας υγείας ■ Η παγκόσμια επίπτωση των ΚΝΜ, τραυματικών και μη τραυματικών, είναι πιθανό να είναι μεταξύ 40 έως 80 περιπτώσεις ανά εκατομμύριο πληθυσμού. Βάσει υπολογισμών για τον πληθυσμό της υφηλίου το 2012, αυτό σημαίνει ότι κάθε χρόνο 250 000 έως 500 000 άτομα παθαίνουν κάκωση νωτιαίου μυελού (1). Η συχνότητα των τραυματικών ΚΝΜ (ΤΚΝΜ) που αναφέρθηκαν σε μελέτες σε επίπεδο χωρών κυμαίνεται από 13 έως 53 ανά εκατομμύριο πληθυσμού. Ιστορικά αναφέρεται πως έως 90% των ΚΝΜ ήταν τραυματικές στην προέλευσή τους, αλλά δεδομένα από τις πιο πρόσφατες μελέτες δείχνουν μια ελαφρά τάση για αύξηση του ποσοστού των μη τραυματικών κακώσεων νωτιαίου μυελού (ΜΤΚΝΜ). Οι διαθέσιμες μελέτες αναφέρουν ότι η επίπτωση των ΜΤΚΝΜ είναι 26 ανά εκατομμύριο. ■ Δεν είναι διαθέσιμες συνολικές εκτιμήσεις της επίπτωσης της ΚΝΜ παγκοσμίως. Τα δεδομένα αναφορικά με τη συχνότητα και την επίπτωση των ΚΝΜ είναι ανεπαρκή και αντιφατικά. Ακόμη και στις ανεπτυγμένες χώρες, οι εικόνες ποικίλουν λόγω διαφορών όσον αφορά την πιστοποίηση της αναπηρίας και το μεθοδολογικό μοντέλο, καθώς και ως προς τις πραγματικές διαφορές στην επιδημιολογία. Για χώρες όπου υπάρχουν διαθέσιμα στοιχεία, οι εικόνες επίπτωσης της ΤΚΝΜ κυμαίνονται από 280 ανά εκατομύριο πληθυσμού στη Φινλανδία (2) έως 681 ανά εκατομύριο 211
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
πληθυσμού στην Αυστραλία (3) έως 1298 ανά εκατομύριο πληθυσμού στον Καναδά (4). Η επίπτωση της ΜΤΚΝΜ για ενήλικες και παιδιά στην Αυστραλία είναι 367 ανά εκατομύριο πληθυσμού (5) και στον Καναδά 1227 ανά εκατομύριο. Συνολικά για τις ΤΚΝΜ και ΜΤΚΝΜ η επίπτωση για τον Καναδά το 2010 ήταν 2525 ανά εκατομύριο πληθυσμού. ■ Η αύξηση της επίπτωσης της ΚΝΜ σε ορισμένες χώρες. Υπάρχει μια τάση αύξησης της επίπτωσης της ΚΝΜ σε χώρες υψηλού εισοδήματος λόγω των αυξήσεων στα ποσοστά επιβίωσης, οι οποίες έχουν φτάσει περίπου το 70% του γενικού πληθυσμού στο προσδόκιμο ζωής για τους τετραπληγικούς και το 88% για τα άτομα με παραπληγία (6). Ωστόσο, τα ποσοστά επιβίωσης σε χαμηλού και μέσου εισοδήματος χώρες παραμένουν φτωχά - τόσο χαμηλά όσο 1 έως 2 έτη μετά τον τραυματισμό σε ορισμένες περιπτώσεις - και αυτό συμβάλλει στη χαμηλότερη επίπτωση (7). Η γενικότερη γήρανση του πληθυσμού παγκοσμίως είναι πιθανό να αυξήσει τα ποσοστά των ΜΤΚΝΜ και υπάρχει μια μικρή τάση των ΜΤΚΝΜ να αυξηθούν ως ποσοστό του συνόλου των ΚΝΜ. ■ Το προφίλ των θυμάτων αλλάζει. Ο ρυθμός επίπτωσης της ΚΝΜ κορυφώνεται στην αρχή της ενηλικίωσης και είναι μικρότερου βαθμού σε μεγάλη ηλικία. Ενώ οι νέοι άνδρες κυριαρχούν στα στατιστικά στοιχεία, το προφίλ των ανθρώπων αλλάζει ώστε να περιλαμβάνει άτομα μεγαλύτερης ηλικίας και περισσότερες γυναίκες. Συνολικά, η ηλικία κατά τη στιγμή του τραυματισμού αυξάνεται. ■ Τα τροχαία ατυχήματα, οι πτώσεις και η βία είναι τρεις κύριες αιτίες της ΚΝΜ. Τα τροχαία ατυχήματα υπερισχύουν στην περιοχή της Αφρικής, όπου αντιπροσωπεύουν σχεδόν το 70% των περιπτώσεων και αποτελούν προέχουσα υποκείμενη αιτία των ΚΝΜ και σε άλλες περιοχές του Π.Ο.Υ. καθώς κυμαίνονται μεταξύ 40% στην περιοχή της Νοτιοανατολικής Ασίας και 55% στη Δυτική Περιφέρεια του Ειρηνικού. Οι πτώσεις, η δεύτερη κύρια αιτία, αντιπροσωπεύουν μόλις πάνω από το 40% των περιπτώσεων στη Νοτιοανατολική Ασία και την Ανατολική Περιφέρεια της Μεσογείου. Η περιοχή της Αφρικής αναφέρει το μικρότερο ποσοστό
(14%) των πτώσεων, με τις άλλες περιφέρειες του ΠΟΥ να εμφανίζουν ποσοστά μεταξύ 27% και 36%. Τα ποσοστά επιθέσεων, συμπεριλαμβανομένης της βίας και των αυτοτραυματισμών, ως επί το πλείστον από πολυβόλα όπλα, ως αιτία της ΚΝΜ ποικίλλουν σημαντικά μεταξύ των περιοχών. Στην Αμερική, στην Αφρική και στην Ανατολική Μεσόγειο αναφέρονται τα υψηλότερα ποσοστά της τάξης του 14%, 12% και 11%, αντίστοιχα. Τα εργατικά ατυχήματα συμβάλλουν σε τουλάχιστον 15% του συνόλου των περιπτώσεων ΤΚΝΜ. Σε όλες τις περιφέρειες οι δραστηριόττηες αθλητισμού και αναψυχής συμβάλλουν λιγότερο από το 10% του συνόλου των περιπτώσεων ΤΚΝΜ. Οι απόπειρες αυτοκτονίας φαίνεται να συμβάλλουν σε πάνω από το 10% των περιπτώσεων ΤΚΝΜ σε ορισμένες χώρες. Η φυματίωση μπορεί να αντιπροσωπεύει έως και το 20% όλων των περιπτώσεων ΜΤΚΝΜ σε μερικές περιοχές. ■ Οι άνθρωποι με ΚΝΜ πεθαίνουν νωρίτερα. Μελέτες έχουν δείξει ότι άνθρωποι με ΚΝΜ είναι 2-5 φορές πιο πιθανό να πεθάνουν νωρίτερα από άτομα χωρίς ΚΝΜ. Τα άτομα με τετραπληγία είναι σε μεγαλύτερο κίνδυνο από ό, τι τα άτομα με παραπληγία, και τα άτομα με πλήρεις βλάβες διατρέχουν μεγαλύτερο κίνδυνο από ό, τι τα άτομα με ατελείς βλάβες. Η θνησιμότητα είναι ιδιαίτερα υψηλή κατά το πρώτο έτος μετά τον τραυματισμό (8), και τα ποσοστά θνησιμότητας επηρεάζονται έντονα από την ικανότητα του συστήματος υγειονομικής περίθαλψης, ιδιαίτερα των υπηρεσιών επειγόντων περιστατικών. ■ Στις χώρες με χαμηλά εισοδήματα, δευτερεύοντες καταστάσεις που δύναται να προληφθούν παραμένουν οι κύριες αιτίες θανάτου σε άτομα με ΚΝΜ (9). Σε χώρες με υψηλά εισοδήματα, οι κύριες αιτίες θανάτου για άτομα με ΚΝΜ έχουν αλλάξει κατά τις τελευταίες δεκαετίες (10, 11), με τις ουρολογικές επιπλοκές σε μείωση και μετατόπιση της πρωταρχικής αιτίας θανάτου κυρίως σε αναπνευστικά προβλήματα, πνευμονία ή γρίππη. Οι καρδιακές παθήσεις, οι αυτοκτονίες και τα νευρολογικά προβλήματα αποτελούν άλλα σχετιζόμενα αίτια θανάτου.
212
Κεφάλαιο 9
Ο δρόμος προς τα εμπρός: συστάσεις
2. Το προσωπικό και κοινωνικό αντίκτυπο της κάκωσης νωτιαίου μυελού είναι σημαντικό ■ Η ΚΝΜ έχει εξουθενωτική ψυχολογική επίπτωση. Το 20-30% των ατόμων με ΚΝΜ παρουσιάζει κλινικά σημαντική συμπτωματολογία κατάθλιψης, η οποία είναι σημαντικά υψηλότερη από ότι στο γενικό πληθυσμό (12), παρόλο που η πλειοψηφία των ανθρώπων τελικά προσαρμόζονται καλά στην ΚΝΜ. ■ Οι άνθρωποι με ΚΝΜ έχουν στενότερα περιθώρια υγείας, που οφείλεται εν μέρει σε επιπλοκές που δυνητικά προλαμβάνονται όπως λοιμώξεις του ουροποιητικού συστήματος και έλκη πίεσης. ■ Η ΚΝΜ σχετίζεται με τη διάλυση της οικογένειας, αλλά και την ενδυνάμωση των οικογενειακών δεσμών. Αμέσως μετά τον τραυματισμό, η ΚΝΜ μπορεί να έχει αρνητικό αντίκτυπο στις προσωπικές σχέσεις και συνδέεται με ένα υψηλότερο ποσοστό διαζυγίων. Ωστόσο, μετα την ΚΝΜ οι SCI σχέσεις γενικά γίνονται καλύτερες. Οι φροντιστές παιδιών και νέων με δισχιδή ράχη ή ΤΚΝΜ συνήθως βιώνουν απομόνωση και άγχος. ■ Μικρότερη συμμετοχή στο σχολείο. Παιδιά και νέοι με δισχιδή ράχη ή επίκτητη ΚΝΜ είναι λιγότερο πιθανό να πηγαίνουν στο σχολείο και λιγότερο πιθανό να συμμετέχουν στην τριτοβάθμια εκπαίδευση. Συναντούν εμπόδια κατά τη μετάβαση από το σχολείο στην τριτοβάθμια εκπαίδευση, καθώς και μεταξύ της εκπαίδευσης και της εργασιακής απασχόλησης. ■ Η ΚΝΜ συνδέεται με χαμηλότερα ποσοστά οικονομικής συμμετοχής. Ο ποσοστιαίος μέσος όρος απασχόλησης παγκοσμίως για τα άτομα με ΚΝΜ είναι μόνο 37%, με μέγιστο το 51% στην Ευρώπη (13). ■ Τα κόστη της ΚΝΜ είναι υψηλότερα από ό, τι συγκρίσιμων καταστάσεων, όπως η άνοια, η σκλήρυνση κατά πλάκας, η εγκεφαλική παράλυση και η διπολική διαταραχή. Στην Αυστραλία το κόστος ζωής (συμπεριλαμβανομένων των οικονομικων εξόδων και του κόστους λόγω βαρύτητας της νόσου) εκτιμάται ότι είναι 5 εκατομύρια δολάρια Αυστραλίας για ένα άτομο με παραπληγία και 9.5
εκατομμύρια δολάρια Αυστραλίας για ένα άτομο με τετραπληγία (14). Οι έμμεσες δαπάνες, όπως τα διαφυγόντα εισοδήματα, σε γενικές γραμμές υπερβαίνουν το άμεσο κόστος.
3. Εμπόδια σε υπηρεσίες και στο περιβάλλον περιορίζουν τη συμμετοχή και υπονομεύουν την ποιότητα ζωής ■ Η ανεπαρκής πολιτική και πρόνοια. Πολύ συχνά οι κατάλληλες πολιτικές και υπηρεσίες είναι απούσες σε τομείς όπως η εκπαίδευση χωρίς αποκλεισμούς, τα προσβάσιμα μέρη και η αποκατάσταση. Για παράδειγμα σε χώρες χαμηλών και μεσαίων εισοδημάτων, μόνο 5-15% των ανθρώπων κατέχει τα βοηθήματα που έχει ανάγκη (15). Σε μια Ολλανδική μελέτη, περισσότεροι από το ήμισυ των ερωτηθέντων με ΚΝΜ καθυστέρησαν να πάρουν εξιτήριο από δομή ενδονοσοκομειακής αποκατάστασης λόγω καθυστέρησης στη λήψη αναπηρικού αμαξιδίου (16). ■ Η έλλειψη χρηματοδότησης. Μια μελέτη από τη Νιγηρία, για παράδειγμα, έδειξε ότι σε πάνω από το 40% των ερωτηθέντων με ΚΝΜ, το κόστος της οξείας θεραπείας αντιπροσώπευε πάνω από το 50% του ετήσιου εισοδήματός τους (17). Ομοίως, το κόστος είναι ένα από τα κύρια εμπόδια όταν πρόκειται για απόκτηση βοηθημάτων. ■ Φυσικά εμπόδια προσβασιμότητας. Σπίτια, σχολεία, χώροι εργασίας, ακόμη και νοσοκομεία είναι συχνά μη προσβάσιμα από άτομα που χρησιμοποιούν αναπηρικό αμξίδιο. Η μη προσβασιμότητα σε μεταφορικά μέσα είναι ένα σημαντικό εμπόδιο για τη συμμετοχή στην κοινωνία, ιδιαίτερα για τα άτομα που ζουν σε αγροτικές περιοχές. Αυτό εμποδίζει ανθρώπους με ΚΝΜ να φύγουν από το νοσοκομείο ή το γηροκομείο και να γίνουν ανεξάρτητοι. ■ Η αρνητική στάση. Για να γίνει αντιληπτό αναφέρεται ως ένα παράδειγμα μια στάση ζωής πως η τετραπληγία είναι μια μοίρα χειρότερη από τον θάνατο, ή ότι οι άνθρωποι σε αναπηρικά αμαξίδια δεν μπορούν να εργαστούν ή να έχουν στενές σχέσεις. Ακόμη και μέλη της οικογένειας μπορεί να 213
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
έχουν αρνητική στάση και χαμηλές προσδοκίες. Συχνά η προκατάληψη προκύπτει από έλλειψη γνώσης και έλλειψη επαφής. ■ Η έλλειψη γνώσης. Πάροχοι αποκατάστασης μπορεί να έχουν ελλιπή γνώση και δεξιότητες σχετικά με την ΚΝΜ. Για παράδειγμα, η έλλειψη τεχνογνωσίας μεταξύ των φορέων παροχής υπηρεσιών μπορεί να εμποδίσει τους ανθρώπους με ΚΝΜ στην απόκτηση κατάλληλων τεχνολογικών βοηθημάτων. Το ποσωπικό πρωτοβάθμιας φροντίδας υγείας μπορεί να μην γνωρίζει τις επιπλοκές της ΚΝΜ που προλαμβάνονται και οι διαγνωστικές δυσκολίες μπορεί να σημαίνουν ότι τα άτομα με ΚΝΜ δεν ελέγχονται ή δεν θεραπεύονται για τις γενικές ανάγκες υγείας τους.
4. Η κάκωση νωτιαίου μυελού προλαμβάνεται ■ Οι θάνατοι και οι αναπηρίες που συνδέονται με τροχαία ατυχήματα μπορούν να μειωθούν μέσω Ασφαλών Συστημάτων προσέγγισης (Safe System approach), που υπογραμμίζουν τι μπορεί να γίνει για να βελτιωθεί το οδικό δίκτυο, η ασφάλεια των οχημάτων και η συμπεριφορά των οδηγών (18). Για παράδειγμα η πρώτη χώρα παγκοσμίως που θεσμοθέτησε την υποχρεωτική χρήση ζώνη ασφαλείας ήταν η Αυστραλία το 1970 και σε συνδυασμό με κυβερνητικές προσπάθειες να βελτιωθεί ο οδικός σχεδιασμός και οι κανόνες ασφαλείας για τα αυτοκίνητα, υπήρξε μια 4% πτώση στην ετήσια συχνότητα ΚΝΜ από τροχαία ατυχήματα. ■ Η τήρηση εργασιακών κανόνων υγείας και ασφαλείας μπορεί να μειώσει τους τραυματισμούς που προκαλούνται στους τομείς της εξόρυξης, των κατασκευών και της γεωργίας. ■ Ο περιορισμός της πρόσβασης σε όπλα και μαχαίρια αποτρέπει τους τραυματισμούς και μειώνει το κόστος για την κοινωνία. Μέτρα για τον περιορισμό της πρόσβασης περιλαμβάνουν απαγορεύσεις, ειδικό καθεστώς αδειοδότησης, ένα ελάχιστο όριο ηλικίας για τους αγοραστές, ελέγχους του ιστορικού του κτήτη και προϋποθέσεις για ασφαλή αποθήκευση. Αυτά τα μέτρα μέτρα έχουν εφαρμοστεί με επιτυχία στην Αυστρία, τη Βραζιλία και ορισμένες πολιτείες των ΗΠΑ. 214
■ Τραυματισμοί από αθλητικές και ψυχαγωγικές δραστηριότητες μπορούν να ελαχιστοποιηθούν μέσω της βελτίωσης του σχεδιασμού (π.χ. στις πισίνες, στον εξοπλισμό παιχνιδιού και στις πίστες του σκι), των πληροφοριών για την ασφάλεια (π.χ. για τον κίνδυνο κατάδυσης σε ρηχά νερά, την κατάρτιση των προπονητών ράγκμπι) και της ευαισθητοποίησης σε αθλητικού επίπεδο ■ Η πρώιμη διάγνωση και η αντιμετώπιση μπορεί να μειώσει τη συχνότητα της σπονδυλικής φυματίωσης (20), καθώς επίσης και των καρκινικών σπονδυλικών όγκων ■ Η βελτιωμένη σίτιση μειώνει τη συχνότητα της δισχιδούς ράχης και άλλων ανωμαλιών του νευρικού σωλήνα (21). Η εθελοντική λήψη συμπληρωματικά φυλλικού οξέος κατά το διάστημα περί τη σύλληψη (3 μήνες πριν και 1 μετά) έχει αποδειχθεί πως μειώνει το ποσοστό των βρεφών που γεννιούνται με ανωμαλίες του νευρικού σωλήνα, συμπεριλαμβανομένης της δισχιδούς ράχης (22, 23). Πολλές χώρες που έχουν μια πολιτική να εμπλουτίζουν το αλεύρι με φυλλικό οξύ παρουσίασαν μια πτώση στη συχνότητα εμφάνισης της δισχιδούς ράχης (24–27).
5. Η επιβίωση είναι δυνατή μετά από κάκωση νωτιαίου μυελού ■ Κατάλληλη προ-νοσοκομειακή φροντίδα είναι ζωτικής σημασίας για την άμεση επιβίωση. Απαιτείται γρήγορη αναγνώριση, έγκαιρη αξιολόγηση και κατάλληλη διαχείριση των υπόπτων για κάκωση νωτιαίου μυελού. Η προ-νοσοκομειακή αντιμετώπιση της τραυματικής κάκωσης νωτιαίου μυελού απαιτεί: μια γρήγορη αξιολόγηση, συμπεριλαμβανομένης της μέτρησης των ζωτικών σημείων και του επιπέδου συνείδησης, έναρξη αντιμετώπισης της βλάβης συμπεριλαμβανομένης της σταθεροποίησης των ζωτικών λειτουργιών, ακινητοποίηση της σπονδυλικής στήλης, ώστε να διατηρηθεί η νευρολογική λειτουργία, μέχρι να επιτευχθεί μακροχρόνια σταθεροποίηση της σπονδυλικής στήλης, καθώς και έλεγχος της αιμορραγίας, της θερμοκρασίας του σώματος και του πόνου και την ταχεία και ασφαλή πρόσβαση στο σύστημα υγείας. Οι άνθρωποι θα πρέπει ιδανικά να φτάσουν εντός
Κεφάλαιο 9
Ο δρόμος προς τα εμπρός: συστάσεις
δύο ωρών σε μονάδα αντιμετώπισης οξέων καταστάσεων κάτι που απαιτεί κατάλληλες υπηρεσίες έκτακτης ανάγκης και διάσωσης. ■ Η οξεία φροντίδα εξασφαλίζει την σταθεροποίηση. Η οξεία φροντίδα μπορεί να περιλαμβάνει χειρουργική επέμβαση ή συντηρητική αντιμετώπιση, αλλά η ακριβής διάγνωση της ΚΝΜ και των συνυπάρχουσων καταστάσεων είναι βήμα ζωτικής σημασίας. Θα πρέπει να ληφθούν υπόψη πολλοί παράγοντες για να καθοριστεί η πλέον κατάλληλη προσέγγιση αντιμετώπισης, συμπεριλαμβανομένου του επιπέδου της βλάβης, του τύπου του κατάγματος, του βαθμού της αστάθειας, της ύπαρξης νευρικής συμπίεσης, του αντίκτυπου των άλλων τραυματισμών, της χρονικής στιγμής του χειρουργείου, της διαθεσιμότητας πόρων, όπως η εξειδίκευση και οι κατάλληλες ιατρικές και χειρουργικές εγκαταστάσεις, τα οφέλη και τους κινδύνους. Σε όλες τις περιπτώσεις, στα άτομα με ΚΝΜ και στα μέλη των οικογενειών τους, θα πρέπει να δοθεί μια επιλογή μέσω πληροφοριών μεταξύ συντηρητικής και χειρουργικής αντιμετώπισης. ■ Συνεχής διατήρηση της υγειονομικής περίθαλψης είναι απαραίτητη για την επιβίωση και την ποιότητα ζωής. Ένα άτομο μπορεί να αποφύγει ή να επιβιώσει από τις επιπλοκές της ΚΝΜ, όπως λοιμώξεις του ουροποιητικού συστήματος και έλκη πίεσης, να παραμείνει υγιές και να απολαμβάνει μια μακρά και γεμάτη ζωή με την πρόσβαση σε συνεχή φροντίδα υγείας. Οι άνθρωποι με ΚΝΜ έχουν συχνά στενότερα όρια υγείας, για παράδειγμα, ένα αυξημένο κίνδυνο λοιμώξεων του θώρακα και καρδιαγγειακής νόσου. Χωρίς πρόσβαση σε βασικές υπηρεσίες υγείας, και σε προϊόντα, όπως καθετήρες και κατάλληλα μαξιλάρια και περαιτέρω συμβουλές για υγιεινή διαβίωση, ένα άτομο με ΚΝΜ είναι πιο πιθανό να πεθάνει πρόωρα.
6. Η κάκωση νωτιαίου μυελού δεν πρέπει να αποτελεί εμπόδιο για την καλή υγεία και την κοινωνική συμμετοχή Ένα άτομο με ΚΝΜ που έχει πρόσβαση σε υπηρεσίες υγείας, προσωπική βοήθεια εάν απαιτείται και βοηθητικές συσκευές οφείλει να είναι ικανό να επιστρέψει
στις σπουδές, να μένει ανεξάρτητο, να συνεισφέρει οικονομικά και να συμμετέχει στην οικογενειακή και κοινωνική ζωή. ■ Μόλις σταθεροποιηθεί, υπάρχει η ανάγκη για πρόσβαση σε σχετικές υπηρεσίες ιατρικής περίθαλψης και αποκατάστασης της οξείας και μετά-οξείας φάσης, για να εξασφαλιστεί η μέγιστη λειτουργικότητα και ότι το άτομο μπορεί να γίνει όσο το δυνατόν πιο ανεξάρτητο. Υπάρχουν διάφορα μοντέλα παροχής υπηρεσιών, αλλά τα εξειδικευμένα κέντρα έχουν αποδειχθεί ότι μειώνουν τα έξοδα, έχουν αποτέλεσμα λίγες επιπλοκές και λιγότερες επανεισαγωγές, σε σύγκριση με μη εξειδικευμένες υπηρεσίες. Οι άνθρωποι με ΚΝΜ δίνουν υψηλή προτεραιότητα στην επίτευξη ελέγχου της ουροδόχου κύστης και του εντέρου . Με τη θεραπεία μπορεί να ενισχύσουν τη λειτουργία στα κάτω και άνω άκρα και να διδαχθούν τεχνικές για την επίτευξη της ανεξαρτησίας στις καθημερινές δραστηριότητες. Οι υπηρεσίες και η συμβουλευτική των υπηρεσιών ψυχικής υγείας είναι σημαντικές: η κατάθλιψη συνδέεται με λιγότερη βελτιώση στη λειτουργικότητα και αυξημένο ποσοστό επιπλοκών της υγείας. Πληροφορίες και υποστήριξη σχετικά με τη σεξουαλική υγεία και τις ανάγκες αναπαραγωγής θα πρέπει επίσης να είναι μέρος της αποκατάστασης. ■ Οι κατάλληλες βοηθητικές συσκευές είναι ζωτικής σημασίας συστατικό της αποκατάστασης. Για παράδειγμα, πάνω από το 90% των ατόμων με ΚΝΜ απαιτούν κάποιου τύπου αναπηρικό αμαξίδιο. Αυτό πρέπει να είναι το κατάλληλο για το άτομο και για το περιβάλλον του. Άλλες βοηθητικές τεχνολογικές ανάγκες περιλαμβάνουν τροποποιήσεις μέσα και γύρω από την κατοικία, τον έλεγχο του περιβάλλοντος, και μερικές φορές συστήματα επικοινωνίας για άτομα με τετραπληγία. ■ Οι υπηρεσίες θα πρέπει να υποστηρίζουν την επιστροφή στην εκπαίδευση και την απασχόληση. Οι ομάδες αυτοβοήθειας, τα προσβάσιμα κτίρια και τα μεταφορικά μέσα, η επαγγελματική αποκατάσταση και τα μέτρα κατά των διακρίσεων μπορούν να εξασφαλίσουν ότι τα παιδιά και οι ενήλικες μπορούν να επιστρέψουν στις σπουδές, να ζουν ανεξάρτητα, να συνεισφέρουν οικονομικά και να συμμετέχουν στην οικογενειακή και κοινωνική ζωή. 215
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Συστάσεις 1. Βελτίωση της ανταπόκρισης του τομέα υγείας στην κάκωση νωτιαίου μυελού Αυτό απαιτεί: να θεμελιωθούν δυνατότητες υπηρεσιών υγείας και αποκατάστασης, να ενισχυθούν οι υπηρεσίες πρόληψης και πρώιμης αντιμετώπισης. Να εξασφαλιστεί ότι οι κατάλληλες υπηρεσίες υγείας και αποκατάστασης είναι διαθέσιμες και προσβάσιμες, να βελτιωθεί ο συντονισμός για την ενίσχυση της αποτελεσματικότητας και την εξοικονόμηση δαπανών. Να επεκταθεί η ασφαλιστική κάλυψη υγείας έτσι ώστε η ΚΝΜ να μην οδηγεί σε καταστροφικές για την υγεία δαπάνες και να προσδιοριστούν στρατηγικές για την προμήθεια των κατάλληλων τεχνολογικών βοηθημάτων και προϊόντων υγείας.
3. Αντιμετώπιση αρνητικών συμπεριφορών απέναντι στα άτομα με κάκωση νωτιαίου μυελού Στο πλαίσιο των εκστρατειών ευαισθητοποίησης γενικότερα όσον αφορά την αναπηρία, αυτό μπορεί να περιλαμβάνει μια σειρά παρεμβάσεων, συμπεριλαμβανομένης προπτυχιακής εκπαίδευσης των γιατρών και άλλων επαγγελματιών υγείας, δραστηριότητες στην τάξη για να μειωθεί το στίγμα, και εκστρατείες ευαισθητοποίησης μέσω των μέσων ενημέρωσης.
4. Εξασφάλιση προσβασιμότητας σε κτίρια, μεταφορικά μέσα και πληροφορίες Αυτό απαιτεί: ενσωμάτωση εθνικών προτύπων πρόσβασης, διδασκαλία σε αρχιτέκτονες και σχεδιαστές αναφορικά με τον καθολικό σχεδιασμό, βελτίωση της πρόσβασης στην κοινωνική στέγαση, προώθηση του "καθολικού σχεδιασμού" λεωφορείων ταχείας μεταφοράς, υποχρεωτική προσβασιμότητα στα ιδιωτικά ταξί, και μέσω των οργανώσεων των ατόμων με αναπηρία να διαβουλεύονται σχετικά με την προσβασιμότητα και να παρακολουθούν την πρόοδό της.
2. Ενίσχυση των ατόμων με κάκωση νωτιαίου μυελού και των οικογενειών τους Οι άνθρωποι με ΚΝΜ χρειάζονται πληροφόρηση, έτσι ώστε να δύνανται να αναλάβουν την ευθύνη για την προσωπική τους φροντίδα υγείας μετά το εξιτήριο. Οι πληροφορίες πρέπει να μοιράζονται με τα μέλη της οικογένειας κατά τη διάρκεια της αποκατάστασης. Η υποστήριξη στα μέλη της οικογένειας και σε άλλους φροντιστές μπορεί να αποτρέψει το άγχος και την επαγγελματική εξουθένωση. Σε χώρες με υψηλό εισόδημα, μπορεί να παροτρυνθεί και να είναι οικονομικά αποτελεσματικό ένα ανεξάρτητο μοντέλο διαβίωσης προσωπικής βοήθειας για άτομα με ΚΝΜ που έχουν υψηλές ανάγκες υποστήριξης. Η αποκατάσταση στο πλαίσιο της κοινότητας (ΚΠΑ) είναι σημαντική σε χαμηλού εισοδήματος περιοχές. Σε όλους τους χώρους, τα κοινωνικά δίκτυα, οι ομάδες αυτοβοήθειας και οι οργανώσεις των ατόμων με αναπηρίες μπορούν να προωθήσουν την ενίσχυση και τη συμμετοχή. Η πρόσβαση σε φυσικές δραστηριότητες και ο αθλητισμός μπορούν να προωθήσουν τη φυσιολογική και ψυχολογική ευημερία.
5. Υποστήριξη εργασίας και αυτοαπασχόλησης Επαγγελματική κατάρτιση, ευέλικτες ώρες εργασίας, υποστηριζόμενη απασχόληση και προγράμματα αποκατάστασης στην κοινότητα με έμφαση στο βιοπορισμό του ατόμου, είναι όλες ελπιδοφόρες δυνατότητες για τα άτομα με ΚΝΜ αναφορικά με την επιστροφή τους στην εργασία. Συστήματα κοινωνικής προστασίας θα πρέπει να είναι διαθέσιμα , ανάλογα με την περιοχή και την οικονομική κατάσταση του ατόμου, αλλά δεν θα πρέπει να λειτουργούν ως αντικίνητρο για την επιστροφή στην εργασία.
6. Προαγωγή κατάλληλης έρευνας και συλλογής δεδομένων Υπάρχει επιτακτική ανάγκη τόσο για την αύξηση όσο και τη βελτίωση συλλογής δεδομένων με συστηματικό
216
Κεφάλαιο 9
Ο δρόμος προς τα εμπρός: συστάσεις
τρόπο και την έρευνα σε ΚΝΜ. Συγκεντρωτικά στατιστικά στοιχεία σχετικά με ΚΝΜ, με χρήση τυποποιημένης ορολογίας της Διεθνούς Ταξινόμησης Εξωτερικών Αιτίων της Κάκωσης (ICECI), μπορεί να βοηθήσει την παρούσα ανάλυση των τάσεων και να βοηθήσει στην παρακολούθηση των πολιτικών απαντήσεων. Τα μητρώα ΚΝΜ, τα οποία συγκεντρώνουν δεδομένα απ'ευθείας από τα νοσοκομεία, μαζί με επιμήκεις μελέτες κοόρτης βασισμένες στον πληθυσμό που καλύπτουν σημαντικούς τομείς της ζωής, είναι οι καλύτεροι τρόποι συλλογής δεδομένων ΚΝΜ. Σε επίπεδο υπηρεσιών, τα δεδομένα που είναι απαιτούνται αφορούν τις δαπάνες, τα αποτελέσματα και το κόστος / όφελος.
Επόμενα βήματα Η εφαρμογή των συστάσεων απαιτεί την συμμετοχή διαφορτικών τομέων - υγείας, εκπαίδευσης, κοινωνικής προστασίας, εργασίας, μεταφορών και στέγασης και διαφορετικών φορέων - κυβερνήσεων, κοινωνικών οργανώσεων (συμπεριλαμβανομένων των οργανώσεων των ατόμων με ειδικές ανάγκες), επαγγελματιών, ιδιωτικού τομέα, καθώς και των ατόμων με κάκωση νωτιαίου μυελού και των οικογένειών τους. Οι τομείς και οι φορείς θα πρέπει να εργαστούν μαζί γιατί η διεπιστημονική ομαδική εργασία θα μεγιστοποιήσει την επιτυχία. Είναι ουσιώδες οι χώρες να προσαρμόσουν τις δράσεις τους στα εξειδικευμένα τους πλαίσια. Όταν οι χώρες περιορίζονται λόγω περιορισμένων πόρων, ορισμένες από τις δράσεις προτεραιότητας, ιδίως αυτές που απαιτούν τεχνική βοήθεια και χτίσιμο ικανοτήτων, μπορεί να συμπεριληφθούν στο πλαίσιο της διεθνούς συνεργασίας για την αναπηρία και την ανάπτυξη.
■ εξασφαλίσουν ότι υπάρχουν τα κατάλληλα συστήματα ασφάλισης που μπορούν να προστατεύσουν τους ανθρώπους από τα κόστη του τραυματισμού ■ στηρίξουν τη δημόσια ευαισθητοποίηση, ενημέρωση και εκπαιδευτικές πρωτοβουλίες που αμφισβητούν την αρνητική στάση απέναντι στην αναπηρία ■ θεσπίσουν τα κατάλληλα πρότυπα προσβασιμότητας, που να καλύπτουν τη στέγαση, τις μεταφορές και τα δημόσια κτίρια ■ εξασφαλίσουν ότι οι εκπαιδευτικές πολιτικές επιτρέπουν στα παιδιά και τους ενήλικες με ΚΝΜ να πηγαίνουν στο σχολείο και το πανεπιστήμιο όπως οι άλλοι ■ εξασφαλίσουν την πρόσβαση στην επαγγελματική αποκατάσταση για να βοηθήσει τους ανθρώπους με ΚΝΜ να προετοιμαστούν για την εργασία ■ θεσπίσουν νομοθεσία κατά των διακρίσεων στη γραμμή της Σύμβασης για τα Δικαιώματα των Ατόμων με Αναπηρία (CRPD: Convention on the Rights of Persons with Disabilities).
Οι επαγγελματίες υγείας και κοινωνικής μέριμνας και οι οργανώσεις τους μπορούν να: ■ προσφέρουν κατάλληλη υγειονομική περίθαλψη ΚΝΜ, με μια συντονισμένη διεπιστημονική προσέγγιση που περιλαμβάνει τα άτομα με ΚΝΜ και τα μέλη της οικογένειας τους ■ ενισχύσουν τα άτομα με ΚΝΜ και τα μέλη των οικογενειών τους, έτσι ώστε να είναι σε θέση να ασχοληθούν με τη δική τους υγεία ώστε να ζήσουν όσο το δυνατό περισσότερο ■ περιλαμβάνουν θέματα ΚΝΜ στο πρόγραμμα σπουδών της ιατρικής και συναφών επαγγελματιών υγείας με στόχο να αυξηθεί η ευαισθητοποίηση σχετικά με την ΚΝΜ και προώθηση της έρευνας σε ΚΝΜ ■ αναλάβουν την έρευνα για τον καθορισμό των βέλτιστων δυνατών μέτρων αποκατάστασης με σκοπό την επανάκτηση της λειτουργικότητας σε διάφορα επίπεδα.
Οι κυβερνήσεις μπορούν να: ■ επενδύσουν σε αποτελεσματικά προγράμματα πρωτογενούς πρόληψης, τα οποία είναι τεκμηριωμένα και δείχνουν σεβασμό στα άτομα με ΚΝΜ ■ βελτιώσουν τις παροχές υγείας, αποκατάστασης και υπηρεσιών υποστήριξης για τα άτομα με ΚΝΜ ■ προωθήσουν πρότυπα για την εθνική συλλογή δεδομένων ΚΝΜ, συμπεριλαμβανομένων των κεντρικών μητρώων ΚΝΜ
217
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Οι οργανώσεις των ατόμων με ειδικές ανάγκες και οι μη κυβερνητικές οργανώσεις μπορούν να: ■ προωθούν την ανάπτυξη των ομοτίμων δικτύων και οργανώσεων αυτοβοήθειας, συμπεριλαμβανομένης της στήριξης σε θεσμούς προσωπικής βοήθειας ■ συμβάλλουν στην ευαισθητοποίηση του κοινού, με πληροφορίες και εκπαιδευτικές πρωτοβουλίες που αντιτίθενται στην αρνητική στάση απέναντι στην αναπηρία ■ βοηθήσουν άτομα με ΚΝΜ στην πρόσβαση σε αθλητικές, θρησκευτικές, πολιτιστικές και ψυχαγωγικές δυνατότητες ■ βοηθήσουν να εκπαιδευτούν και να ενισχυθούν τα άτομα με ΚΝΜ και οι οικογένειές τους σε θέματα διατήρησης της υγείας, βοήθειας και υποστήριξης, στέγασης, προσβασιμότητας και κινητικότητας, εκπαίδευσης και απασχόλησης ■ αναπτύξουν πρωτοβουλίες αποκατάστασης στην κοινότητα σε απομακρυσμένες και φτωχές περιοχές.
λήψης αποφάσεων, το σχεδιασμό, τη ρύθμιση στόχων, καθώς και την παρακολούθηση και αξιολόγηση.
Η ακαδημαϊκή κοινότητα μπορεί να: ■ αυξήσει την τεκμηρίωση βάσει αποδείξεων για παρεμβάσεις με την ενθάρρυνση της έρευνας στην ΚΝΜ ■ συνεργαστεί με τους υπεύθυνους χάραξης πολιτικής και άλλα βασικά ενδιαφερόμενα μέλη στην προώθηση της εφαρμογής των συστάσεων αυτής της έκθεσης ■ προωθήσει την πρόσβαση σε εξειδικευμένη εκπαίδευση ώστε να εξασφαλιστεί επαρκής αριθμός κατάλληλα εκπαιδευμένων επαγγελματιών υγείας ■ εξασφαλίσει ότι τα θέματα των ανθρωπίνων δικαιωμάτων που σχετίζονται με την αναπηρία περιλαμβάνονται σε προπτυχιακά προγράμματα σπουδών για εκπαιδευτικούς, γιατρούς και επαγγελμάτων σχετιζόμενων με την ιατρική ■ άρουν τους φραγμούς στη συμμετοχή των ανθρώπων με ΚΝΜ στην τριτοβάθμια εκπαίδευση και την έρευνα.
Πάροχοι υπηρεσιών μπορούν να: ■ βοηθήσουν στην ενίσχυση των υφιστάμενων πόρων (και να υποστηρίξουν τη δημιουργία νέων) και των κατάλληλων και έγκαιρων υπηρεσίων υγείας για τα άτομα με ΚΝΜ ■ συλλέγουν διεθνώς συγκρίσιμες πληροφορίες για ΚΝΜ και να κάνουν διαθέσιμα τα δεδομένα αυτά στις ετήσιες εκθέσεις που δημοσιεύονται στο διαδίκτυο με τρόπο έτσι ώστε να μπορούν να εντοπίζονται εύκολα κατά την αναζήτηση ■ βοηθήσουν να διασφαλιστεί η ομαλή μετάβαση μεταξύ νοσηλείας στο νοσοκομείο, παρακολούθησης στα εξωτερικά ιατρεία και φροντίδας με βάση την κοινότητα μέσω της σύστασης μιας συντονισμένης, ολοκληρωμένη και πολυτομεακής υπηρεσίας προσέγγισης ■ απασχολήσουν ανθρώπους με ΚΝΜ και μέλη των οικογενειών τους ως εταίρους στο σχεδιασμό και την παροχή υπηρεσιών, να τους παρέχουν πληροφορίες και να τους συμπεριλάβουν στη διαδικασία 218
Ο ιδιωτικός τομέας μπορεί να: ■ επενδύσει στην ανάπτυξη των κατάλληλων και οικονομικά προσιτών υποστηρικτικών τεχνολογιών ■ εξασφαλίσει ότι τα προϊόντα και οι υπηρεσίες είναι προσβάσιμες για τα άτομα με ειδικές ανάγκες, συμπεριλαμβανομένων των ατόμων με ΚΝΜ, σε τομείς όπως η υγεία, ο αθλητισμός και η εκπαίδευση. ■ υιοθετήσουν τον καθολικό σχεδιασμό για νέα προϊόντα και υπηρεσίες ■ απασχολούν άτομα με ΚΝΜ, διασφαλίζοντας ότι η πρόσληψη είναι δίκαιη, ότι παρέχονται κατάλληλες εγκαταστάσεις, καθώς και ότι οι εργαζόμενοι που γίνονται άτομα με ΚΝΜ υποστηρίζονται να επιστρέψουν στην εργασία.
Τα άτομα με κάκωση νωτιαίου μυελού και οι οικογένειές τους μπορούν να: ■ εκπαιδεύσουν τον εαυτό τους σχετικά με θέματα
Κεφάλαιο 9
Ο δρόμος προς τα εμπρός: συστάσεις
διατήρησης της υγείας στην ΚΝΜ ■ συμμετέχουν στην αμοιβαία υποστήριξη και προγράμματα αυτοβοήθειας ■ συμβάλλουν στην εκπαιδευτική κοινότητα και στις δραστηριότητες ευαισθητοποίησης ■ αξιοποιήσουν τις ευκαιρίες για να επιστρέψουν πρόωρα στην εκπαίδευση και στην απασχόληση ■ όπου ενδείκνυται, να εξετάσει την εκ νέου κατάρτιση και την ανάπτυξη των δραστηριοτήτων της αυτοαπασχόλησης για βελτίωση των ευκαιριών τους προς το ζην.
Συμπεράσματα Ενώ η συχνότητα των τραυματικών και μη τραυματικών ΚΝΜ μπορεί και πρέπει να μειωθεί, θα υπάρχουν πάντα νέα κρούσματα ΚΝΜ. Η ΚΝΜ θα συνεχίσει να
προσβάλλει κυρίως άτομα στο άνθος της ζωής τους. Η εξασφάλιση επαρκών απαντήσεων στα ιατρικά και στα θέματα αποκατάστασης, ακολουθούμενη από υποστηρικτικές υπηρεσίες και προσιτό περιβάλλον, θα συμβάλει στην ελαχιστοποίηση της διαταραχής στα άτομα με ΚΝΜ και των οικογενειών τους. Αυτά τα μέτρα θα μειώσουν επίσης το συνολικό κόστος για την κοινωνία, από την άποψη της εξάρτησης και της απώλειας παραγωγικότητας, καθώς και στο άτομο, από την άποψη της χαμηλότερης αυτοεκτίμησης και της διαταραχής στην ποιότητα της ζωής. Η ΚΝΜ μπορεί να προληφθεί, να είναι βιώσιμη και δεν χρειάζεται να εμποδίζει την καλή υγεία και την κοινωνική ένταξη. Αλλά απαιτείται δράση από τις κυβερνήσεις και άλλους ενδιαφερόμενους φορείς επειγόντως. Χωρίς αποτελεσματική δράση, η ΚΝΜ θα παραμείνει δυστυχώς συχνά, μια καταστροφή.
Βιβλιογραφία 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. United Nations Department of Economic and Social Affairs, Population Division. World population prospects: the 2012 revision, 2013. DVD Edition. Dahlberg A et.al. Prevalence of spinal cord injury in Helsinki. Spinal Cord, 2005, 43:47-50. doi: http://dx.doi.org/10.1038/ sj.sc.3101616 PMID:15520842 O’Connor PJ. Prevalence of spinal cord injury in Australia. Spinal Cord, 2005, 43:42-46. doi: http://dx.doi.org/10.1038/ sj.sc.3101666 PMID:15326472 Noonan VK et.al. Incidence and prevalence of spinal cord injury in Canada: a national perspective. Neuroepidemiology, 2012, 38:219226. doi: http://dx.doi.org/10.1159/000336014 PMID:22555590 New PW et.al. Prevalence of non-traumatic spinal cord injury in Victoria, Australia. Spinal Cord, 2013, 51:99-102. doi: http://dx.doi.org/10.1038/sc.2012.61 PMID:22665222 Middleton JW et.al. Life expectancy after spinal cord injury: a 50-year study. Spinal Cord, 2012, 50:803-811. doi: http:/dx.doi.org/10.1038/sc.2012.55 PMID:22584284 Gosselin RA, Coppotelli C. A follow-up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 Lidal IB et.al. Mortality after spinal cord injury in Norway. Journal of Rehabilitation Medicine, 2007, 39:145-151. doi: http://dx.doi.org/10.2340/16501977-0017 PMID:17351697 Rathore MFA. Spinal cord injuries in the developing world. In: JH Stone, M Blouin, eds. International Encyclopedia of Rehabilitation, 2013. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/141/ Hagen EM et.al. Traumatic spinal cord injuries – incidence, mechanisms and course. Tidsskrift for Den Norske Laegeforening, 2012, 132:831-837. doi: http://dx.doi.org/10.4045/tidsskr.10.0859 PMID:22511097 Leal-Filho MB et.al. Spinal cord injury: epidemiological study of 386 cases with emphasis on those patients admitted more than four hours after the trauma. Arquivos de Neuro-Psiquiatria, 2008, 66:365-368. doi: http://dx.doi.org/10.1590/S0004282X2008000300016 PMID:18641873 Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http://dx.doi.org/10.1038/sc.2011.182 PMID:22270190
12.
219
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
13.
14.
15. 16. 17. 18. 19. 20. 21. 22.
23. 24. 25. 26. 27.
Young AE, Murphy GC. Employment status after spinal cord injury (1992–2005): a review with implications for interpretation, evaluation, further research, and clinical practice. International Journal of Rehabilitation Research, 2009, 32:1-11. doi: http://dx.doi.org/10.1097/MRR.0b013e32831c8b19 PMID:19057392 Access Economics for the Victorian Neurotrauma Initiative. The economic cost of spinal cord injury and traumatic brain injury in Australia. 2009 (http://www.tac.vic.gov.au/about-the-tac/our-organisation/research/tac-neurotrauma research/vni/the20economic 20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia.pdf, accessed 9 January 2013). WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. Post MWM et.al. Services for spinal cord injured: availability and satisfaction. Spinal Cord, 1997, 35:109-115. doi: http://dx.doi.org/10.1038/sj.sc.3100362 PMID:9044519 Kawu AA et.al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:11341137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 Peden M et al., eds. World report on road traffic injury prevention. Geneva, World Health Organization, 2004. O’Connor P. Trends in spinal cord injury. Accident; Analysis and Prevention, 2006, 38:71–77. doi: http://dx.doi.org/10.1016/j.aap.2005.03.025 PMID:16111641 Harries AD et.al. The HIV-associated tuberculosis epidemic – when will we act? Lancet, 2010, 375:1906-1919. doi: http://dx.doi.org/10.1016/S0140-6736(10)60409-6 PMID:20488516 Yi Y et.al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 Toriello HV. Policy and Practice Guideline Committee of the American College of Medical Genetics. Policy statement on folic acid and neural tube defects. Genetics in Medicine, 2011, 13:593-596. doi: http://dx.doi.org/10.1097/GIM.0b013e31821d4188 PMID:21552133 De-Regil LM et al. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database of Systematic Reviews, 2010 6:CD007950. Review. PubMed PMID: 20927767. Flour Fortification Initiative. FFI Database. Atlanta, 2012. (http://www.sph.emory.edu/wheatflour/globalmap.php accessed 28 May 2012). Williams LJ et.al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995–2002. Pediatrics, 2005, 116:580586. doi: http://dx.doi.org/10.1542/peds.2005-0592 PMID:16140696 Berry RJ et al. Folic Acid Working Group. Fortification of flour with folic acid. Food and Nutrition Bulletin, Review 2010, 31:S22–35. PubMed PMID 20629350. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554
220
Τεχνικό Παράρτημα Α Μέθοδοι που χρησιμοποιούνται σε συστηματικές αξιολογήσεις για επιδημιολογικά αποτελέσματα (επίπτωση, επιπολασμός, αιτιολογία, θνησιμότητα, κόστος) Η προτειμόμενη δήλωση για αντικείμενα Πληροφόρησης για συστηματικές ανασκοπήσεις και μετα-αναλύσεις (PRISMA) χρησιμοποιήθηκε ως κατευθυντήρια γραμμή για τη διασφάλιση διαφανούς και αναλυτικής αναφοράς της συστηματικής ανασκόπησης και μετα-αναλύσης (1). Η PRISMA είναι εγκεκριμένη από κορυφαίους οργανισμούς και ιατρικά περιοδικά (2).
Στρατηγική Αναζήτησης Οι βάσεις δεδομένων Pubmed/Medline και η EMBASE, η Latin American & Caribbean Health Sciences Literature (LILACS), η Indian Medlars Centre (IndMed) και η African Index Medicus (AIM), διερευνήθηκαν για σχετικές ανακοινώσεις μεταξύ 1της Ιανουαρίου 2000 και 15ης Αυγούστου 2012. Σε αυτή την ανασκόπηση συμπεριλήφθηκαν κακώσεις τραυματικής και μη τραυματικής προέλευσης, όπως περιγράφεται στο κεφ.14 και ταξινομήθηκε από τα Διεθνή σετ δεδομένων τραυμάτων Νωτιαίου Μυελού (3-5). Οι βάσεις δεδομένων διερευνήθηκαν χρησιμοποιώντας τους ελεύθερους όρους "τραυματισμοί νωτιαίου μυελού", "τραυματισμός νωτιαίου μυελού", "κάκωση νωτιαίου μυελού», "παραπληγία", "τετραπληγία", "τραυματική βλάβη νωτιαίου μυελού" και "δισχιδής ράχη" καθώς και οι συντμήσεις "SCI", "TSCI" "NTSCI". Περαιτέρω συμπεριληφθέντες ελεύθεροι όροι σχετιζόμενοι με το αποτέλεσμα ήταν οι "επιδημιολογία", "αιτία", "αιτία θανάτου", "κόστος*", "αιτιολογία", "αιτία" και «θνησιμότητα". Το πλήρες κείμενο διερευνήθηκε χρησιμοποιώντας τους όρους MeSH και θεματικές επικεφαλίδες για ΚΝΜ "Κάκωση νωτιαίου μυελού", "παραπληγία", "τετραπληγία" και "νωτιαίος δυσραφισμός", και τα αποτελέσματα για "αιτιότητα", "επιδημιολογία", "συχνότητα", "επικράτηση", "θνησιμότητα", "αιτιολογία", «αιτία θανάτου» και "έξοδα και το κόστος ανάλυσης", εάν οι βάσεις δεδομένων το επέτρεπαν. Η βιβλιογραφική έρευνα διεξήχθη χωρίς κανένα περιορισμό γλώσσας, η αναζήτηση όρων MeSH περιορίστηκε σε ανθρώπους, η ελεύθερη αναζήτηση όρων ήταν χωρίς περιορισμούς, και συμπεριλήφθηκαν μόνο χαρτιά με διαθέσιμες περιλήψεις . Επιπρόσθετα, βιβλιογραφία συστηματικών ανασκοπήσεων και περιλήψεις βιβλιογραφίας που ανακτήθηκαν, ελέγχθηκαν για περεταίρω δημοσιεύσεις και μια online έρευνα έγινε στο epub για online εργασίες (ahead of print), σε τεύχη των περιοδικών από την 1η Αυγούστου 2012 έως τον Οκτώβριο του 2012 (όπως ήταν διαθέσιμα στο διαδίκτυο στις 8 Οκτωβρίου 2012). Τα Περιοδικά από τα οποία έγινε διαλογή ήταν τα Spinal Cord, Journal of Spinal Cord Medicine, Spine, Journal of Rehabilitation Medicine, Journal of Neurotrauma, Archives of Physical Medicine and Rehabiliation, PM&R (American Journal of Physical Medicine & Rehabilitation), Epidemiology, International Journal of Epidemiology, American Journal of Epidemiology, European Journal of 221
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Epidemiology, Journal of Epidemiology & Community Health, Journal of Clinical Epidemiology, European Spine Journal, Journal of Bone & Joint Surgery, Acta Orthopaedica Scandinavica, Asian Spine Journal, Global Spine Journal, Journal of Neurosurgery: Spine, Neurology India, International Journal of Technology Assessment in Health Care, Journal of Evaluation in Clinical Practice, και Journal of Health Services Research & Policy. Τέλος ιστοσελίδες καταχώρησης ΚΝΜ αναζητήθηκαν για στοιχεία. Σχετικές δημοσιεύσεις με ημερομηνία έκδοσης μετά την 1η Ιανουαρίου 2000 που βρέθηκαν σε τυχαίες αναζητήσεις κατά τη διάρκεια της περαιτέρω διαδικασίας ανάπτυξης της έκθεσης, χρησιμοποιήθηκαν για τη συμπλήρωση των πληροφοριών στα αντίστοιχα τμήματα. Σε μεμονωμένες περιπτώσεις όσον αφορά το αποτέλεσμα "κόστος", ιδιαίτερα σημαντικές εκδόσεις πριν από το 2000, οι οποίες ανακτήθηκαν δια διαλογής του καταλόγου αναφοράς των δημοσιεύσεων, συμπεριλήφθηκαν επίσης.
ματα, αθλητισμός, βία) και (3) τα ποσοστά των υποομάδων. Για συγκριτική ανάλυση, αιτιολογικά δεδομένα επανακατηγοριοποιήθηκαν χρησιμοποιώντας την ταξινόμηση που συνιστάται από το ISCοS (3, 5) όπου απαιτείται.
Κριτήρια αποκλεισμού Για όλα τα αποτελέσματα, μελέτες αποκλείστηκαν εάν αναφέροταν αποκλειστικά σε μία κατάσταση υποομάδας ΚΝΜ (οστεοχονδροδυσπλασία, νευροσύφιλη, πολιομυελίτιδα, HTLV-λοίμωξη, κληρονομική σπαστική παράλυση, σύνδρομο locked-in, χαλαρή παράλυση, σύνδρομο Brown-Sequard, κεντρομυελικό σύνδρομο, SCIWORA, κακοήθης συμπίεση νωτιαίου μυελού), συγκεκριμένες επιπλοκές ή συν-νοσηρότητες (μετά αγγειακή χειρουργική επέμβαση ή επέμβαση σπονδυλικής στήλης, καρκίνος), εθνικές μειονότητες και απασχολησιακό υπόβαθρο (βετεράνοι), ειδικές περιστάσεις (εργασιακά σχετιζόμενες ΚΝΜ) αν δεν ήταν αντιπροσωπευτικές του συνόλου του πληθυσμού, και συγκρίσεις κόστους θεραπείας ή υποθεραπείες (θρόμβωση, καυτηριασμός, φάρμακα). Το ίδιο ίσχυσε και για καταχωρήσεις μοναδικών περιπτώσεων. Στην περίπτωση της δισχιδούς ράχης, δεδομένα εξήχθησαν μόνο από εργασίες που ανέφεραν στοιχεία για την επίπτωση και όταν ήταν διαθέσιμα, από την προ- και μετά- ισχυροποίηση μελέτη. Οι μελέτες αποκλείονταν περαιτέρω αν η υποβολή στοιχείων ήταν ελλιπής (δηλαδή του αριθμού των θανάτων και περιπτώσεις ΚΝΜ που έλλειπαν). Για το Σύστημα του Μοντέλου βλάβης Νωτιαίου Μυελού των ΗΠΑ δεδομένα εξήχθησαν κυρίως από την έκθεση του 2011 καθώς αποδείχθηκε ότι είναι πιο πλούσια και πιο αναλυτική η παρουσίαση των δεδομένων από την άποψη της διαστρωμάτωσης στους κοινωνικο-δημογραφικούς και χρονικούς τομείς (6). Στην περίπτωση των ξενόγλωσσων εγγράφων που πληρούσαν τα κριτήρια επιλεξιμότητας, η ομάδα εξέτασε τις αγγλικές περιλήψεις και αποφάσισε οι πιο αντιπροσωπευτικές μελέτες να μεταφραστούν για την άντληση στοιχείων. Όπου υπήρχαν διπλές ή επικαλυπτόμενες εκδόσεις, η πιο πρόσφατη και / ή ολοκληρωμένη μελέτη συμπεριλήφθηκε στην συστηματική ανασκόπηση.
Κριτήρια ένταξης Μετά από έναν διπλό έλεγχο, τίτλοι και αποσπάσματα από τα ληφθέντα αποτελέσματα διαλέχτηκαν από δύο κριτές για τον προσδιορισμό της επιλεξιμότητας για ένταξη στη συστηματική ανασκόπηση. Σε περίπτωση που η επιλεξιμότητα δεν μπορούσε να επιλυθεί με βάση την περίληψη, ελήφθησαν πλήρους μήκους άρθρα, μεταφραζόμενα όπου ήταν απαραίτητο και αναθεωρούνταν. Οι αβεβαιότητες επιλύθηκαν από ομάδα πέντε ερευνητών με κοινή συναίνεση (consensus). Για το αποτέλεσμα «επίπτωση» και "επιπολασμός", εργασίες συμπεριλήφθηκαν στην ανασκόπηση, εάν: (1) περιέγραφαν τον πληθυσμό στο πλαίσιο του γενικού πληθυσμού και (2) περιελάμβαναν κύριες αιτιολογικές υποομάδες (παραπληγία, τετραπληγία, TSCI, NTSCI, SB). Για τα έγγραφα "θνησιμότητας" έπρεπε τουλάχιστον να οριστούν ένα ή περισσότερα από τα ακόλουθα: (1) τα ποσοστά θνησιμότητας (διαστρωματοποιημένα ή μη) (2) σχετική θνησιμότητα (3) τυποποιημένοι συντελεστές θνησιμότητας (SMR) και (4) το προσδόκιμο ζωής. Στην περίπτωση της "αιτιολογίας", μελέτες συμπεριλήφθηκαν εάν ανέφεραν κάτι σχετικά με: (1) TSCI ή NTSCI (2) τη κατανομή της TSCI και NTSCI αιτίας της βλάβης από υποπροδιαγραφές (π.χ. τροχαία ατυχή-
222
Τεχνικό Παράρτημα Α
Εξαγωγή Δεδομένων Δεδομένα εξήχθησαν από τα έγγραφα πλήρους μήκους σχετικά με τα κύρια χαρακτηριστικά της μελέτης, από πληροφορίες όσον αφορά τα κριτήρια ένταξης και αποκλεισμού και όλα τα σχετικά δεδομένα για τα αποτελέσματα (επίπτωση, επιπολασμός, αιτιολογία, θνησιμότητα, κόστος). Η ποιότητα της εξαγωγής δεδομένων ελέγχθηκε με τη χρήση υπάρχουσων συστηματικών ανασκοπήσεων που ανακτώνται από αναζήτηση σε διασταυρώσεις στοιχείων που αναφέρθησαν. Τα δεδομένα του τελικού συνοπτικού πίνακα διασταυρώθηκαν ξανά και συγκρίθηκαν με τα πρωτότυπα έγγραφα αναφοράς από τρία μέλη της ομάδας. Όταν σχετικά δεδομένα ήταν διαθέσιμα μόνο σε γραφικά (π.χ. η γραφική παράσταση των Kaplan-Meier για αθροιστική επιβίωση), τα ηλεκτρονικά σαρωμένα γραφήματα μετατράπηκαν σε δεδομένα χρησιμοποιώντας λογισμικό ψηφιοποίησης του γραφήματος. Επιπλέον, για τις μελέτες που παρείχαν πληροφορίες σχετικά με τον συνολικό αριθμό των TSCI ή περιπτώσεις NTSCI σε μια δεδομένη χρονική περίοδο σε μια καλά ορισμένη περιοχή καταγραφής (ως επί το πλείστον χώρα), αλλά όχι ποσοστά επίπτωσης, ειδικές για κάθε χώρα για το μέγεθος του πληθυσμού, εκτιμήσεις ελήφθησαν από τους διαθέσιμους στο Διαδίκτυο πόρους (ειδική για κάθε χώρα Εθνική Στατιστική Υπηρεσία ή την Παγκόσμια Βάση Δεδομένων Επιβάρυνσης Νόσων) για να εκτιμηθούν τα ακατέργαστα ποσοστά επίπτωσης.
Σχήμα 2.5. Διανομή TSCI ανά περιοχή της ΠΟΥ Μελέτες αναφερόμενες στην αιτιολογία της TSCI σε ενήλικες και σε μεικτούς πληθυσμούς ενηλίκων /παίδων, επιλέχθηκαν για τον υπολογισμό των βαθμολογιών περιοχικής προσθετικής αιτιολογίας βασιζόμενοι σε διάφορα κριτήρια. Όταν ήταν διαθέσιμες πιο πρόσφατες εθνικές ή μεγαλύτερες μελέτες επιλέχθηκαν μόνο αυτές που αναφέρονταν στα τροχαία ατυχήματα και στις πτώσεις. Η αναφερθείσα επικάλυψη σε χρόνια οδήγησε στον αποκλεισμό των μελετών με μικρότερη διαστρωμάτωση στις αιτιολογίες ή αναφορά του τύπου αιτιολογίας στην κατηγορία "άλλες". Για την ΗΠΑ, η πιο πρόσφατη NSCISC ετήσια έκθεση 2011 (6) χρησιμοποιήθηκε ως κύρια πηγή δεδομένων, και για να αποφευχθούν θέματα επικάλυψης δεδομένων στο χρόνο και τις υποομάδες που χρησιμοποιούνται σε συγκεκριμένες μελέτες που βασίζονται σε δεδομένα των Προτύπων συστημάτων. Περιφερειακές εκτιμήσεις για τη συνολική αιτιολογία της TSCI ελήφθησαν σε δύο στάδια. Κατ 'αρχάς, μια ανά χώρα-ειδική TSCI αιτιολογία προήλθε με τη χρήση του σταθμισμένου μέσου όρου κατανομής των αιτιών μέσω της συνεκτίμησης του μεγέθους του δείγματος των διαθέσιμων μελετών. Δεύτερον, μια περιοχική εκτίμηση του TSCI υπολογίστηκε με βάση τον σταθμισμένο μέσο όρο κατανομής για αιτιολογικώςειδικά TSCI ανά χώρα μέσω της συνεκτίμησης του μεγέθους του πληθυσμού του 2011 των χωρών που παρείχαν στοιχεία. Τα πληθυσμιακά δεδομένα ελήφθησαν σε απευθείας σύνδεση από την στατιστικής υπηρεσίας των Ηνωμένων Εθνών (7). Αξίζει να σημειωθεί ότι, τα διαθέσιμα στοιχεία για την Ταϊβάν, και Κίνα (8), χρησιμοποιήθηκαν για τον υπολογισμό της εκτίμησης για την Κίνα, αλλά είχαν μικρή επίδραση στη συνολική εκτίμηση λόγω του σχετικά μικρού μεγέθους του δείγματος.
Επανυπολογισμός των εκτιμήσεων Σε περιπτώσεις όπου οι μέσοι όροι του πληθυσμού δεν ήταν διαθέσιμοι, μέσες εκτιμήσεις πληθυσμού προήλθαν χρησιμοποιώντας αναφερθείσες στρωματοποιημένες εκτιμήσεις που σταθμίστηκαν για τον σχετικό πληθυσμό των αντίστοιχων στρωμάτων.
Βιβλιογραφία 1. Liberati A et.al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Medicine, 2009, 6:e1000100. doi: http://dx.doi.org/10.1371/journal.pmed.1000100 PMID:19621070
223
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
2. 3. 4. 5. 6. 7. 8.
Endorsers PRISMA. (http://www.prisma-statement.org/endorsers.htm, accessed 26.6.2013). Biering-Sørensen F et.al. International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi.org/10.1038/sj.sc.3101930 PMID:16955072 ISCIDS. The International SCI Data Sets. International Spinal Cord Society (ISCoS) (http://www.iscos.org.uk/page.php?content=20, accessed 22 May 2013). New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord, advance online publication, January 2013. doi: 10.1038/sc.2012.160. doi: http://dx.doi.org/10.1038/sc.2012.160 National Spinal Cord Injury Statistical Center. Complete Public Version of the 2011 Annual Statistical Report for the Spinal Cord Injury Model System. Birmingham, Alabama, 2011. United Nations Statistics Division. (http://unstats.un.org, accessed 26.6.2013). Wu JC et.al. E ffects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of Neurotrauma, 2012, 29:889-897. doi: http://dx.doi.org/10.1089/neu.2011.1777 PMID:21510819
224
Τεχνικό Παράρτημα Β Περιορισμοί σχετικά με τις πηγές δεδομένων που χρησιμοποιούνται στο Κεφάλαιο 2 Ενώ όλες οι προσπάθειες έχουν γίνει για να χρησιμοποιηθούν τα καλύτερα διαθέσιμα στοιχεία, υπάρχουν αρκετοί περιορισμοί στα δεδομένα που χρησιμοποιούνται σε αυτό το κεφάλαιο συγκεκριμένα: ■ μεταβολή στον ορισμό της περίπτωσης ΚΝΜ και τα κριτήρια ένταξης ■ διακύμανση της αντιπροσωπευτικότητας των διαθέσιμων δεδομένων ΚΝΜ. Η πραγματική αντιπροσωπευτικότητα των δεδομένων δεν είναι πάντα εμφανής, δηλαδή αν οι εθνικές στατιστικές αντλούν δεδομένα από εθνικές, περιφερειακές ή υποπεριφερειακές μελέτες ■ μεταβολή στο επίπεδο της πληρότητας των συλλεχθέντων (τοπικων ή εθνικων) δεδομένων ■ ανεπαρκής ποιότητα των μεθοδολογικών εκθέσεων. Εντοπίστηκαν αρκετοί συγκεκριμένοι περιορισμοί που σχετίζονται με τους κύριους δείκτες που χρησιμοποιούνται στην παρούσα έκθεση. Αυτοί έχουν ως εξής: ■ Συχνότητα: Η πηγή του πληθυσμού των περιπτώσεων (δεξαμενή συλλογής) συχνά ορίζεται ελλειπώς, ιδίως στις μελέτες που εκθέτουν σχετικά με περιφερειακά στοιχεία, πολυκεντρικά ή μόνοκεντρικά δεδομένα (π.χ. δεν είναι πάντα γνωστό αν το νοσοκομείο είναι το μόνο περιφερειακό κέντρο αναφοράς για ΚΝΜ). Επιπλέον, για τη συχνότητα της ΤΚΝΜ, είναι συχνά ασαφές εάν τα άτομα που πεθαίνουν από την ΚΝΜ κατά τη στιγμή του τραυματισμού περιλαμβάνονται. Είναι ασαφές το εάν οι άνθρωποι που βρίσκονται υπό φροντίδα για το τέλος της ζωής τους και ταυτίζονται με ΚΝΜ αν περιλαμβάνονται στην συχνότητα των ΜΤΚΝΜ. ■ Επιπολασμός: ο πληθυσμός αναφοράς των περιπτώσεων ορίζεται συχνά πτωχά. Οι περισσότερες χώρες δεν έχουν διαθέσιμα άμεσα δεδομένα επικράτησης, και για τα δεδομένα του διαμεσολαβητή είναι δύσκολη η πρόσβαση (π.χ. δεδομένα ασφάλισης, στοιχεία παροχών για αναπηρία). Ως αποτέλεσμα, εκτιμήσεις επικράτησης συχνά προέρχονται από μελέτες μοντέλων που βασίζονται σε ασθενή βάση αποδεικτικών στοιχείων, και συνεπώς περιλαμβάνουν θαρραλέες υποθέσεις, και ως εκ τούτου έχουν ένα μεγάλο επίπεδο αβεβαιότητας. ■ Θνησιμότητα: Μεθοδολογικά κριτήρια και διαδικασίες για την ένταξη και τον αποκλεισμό των περιπτώσεων στην αξιολόγηση της αθροιστικής θνησιμότητας (π.χ. μέθοδος Kaplan-Meier) ή τη διαμόρφωση των ποσοστών θνησιμότητας ή παράγοντες κινδύνου θνητότητας (ανάλυση χρόνου έως το συμβάν, Cox παλινδρόμηση) συνήθως δεν περιγράφονται. Πιο συγκεκριμένα, λίγες μελέτες αναφέρονται στην απώλεια της συνεχιζόμενης παρακολούθησης και την πληρότητα της εξακρίβωσης της θνησιμότητας (right censoring). Περαιτέρω, συχνά δεν είναι σαφές εάν οι περιπτώσεις πρώιμης θνησιμότητας περιλαμβάνονται στην ανάλυση ((left censoring).
225
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
■ Αιτιολογία: Μελλοντικές μελέτες θα πρέπει να τηρούν πιο αυστηρά τις διεθνείς συστάσεις του ISCoS σχετικά με την ταξινόμηση και την ιεραρχική αναφορά της αιτιολογίας των ΤΚΝΜ και ΜΤΚΝΜ. Επιπλέον, περιπτώσεις ΤΚΝΜ που σχετίζονται με την εργασία και αυτοτραυματισμούς (απόπειρες αυτοκτονίας) χρειάζονται συστηματική τεκμηρίωση (δηλαδή επιπλέον της ταξινόμησης ISCoS) περιπτώσεις διαστρωματοποιημένες ανάλογα με την εργασία και την αυτοκτονία, κλπ).
226
Τεχνικό Παράρτημα Γ Μέτα-ανάλυση Δεδομένων Δισχιδούς ράχης Μια τυχαίων αποτελεσμάτων μέτα-ανάλυση στοιχείων για την εξαγόμενη ετήσια επίπτωση* δισχιδούς ράχης διεξήχθη για να αντλήσει μια συνοπτική εκτίμηση για τρεις τύπους διαθέσιμων δεδομένων. Οι τύποι δεδομένων, κατά αύξουσα σειρά πληρότητας και προνομιακής χρήσης στην ανάλυση, περιλαμβάνουν ζωντανά στοιχεία γέννησης μόνο, δεδομένα επιβίωσης και θνησιγένειας, και δεδομένα τερματισμού εγκυμοσύνης δεδομένων. Μέτα-αναλύσεις πραγματοποιήθηκαν με το στατιστικό πακέτο STATA, έκδοση 12.1, χρησιμοποιώντας την εντολή «metan». Τα ετήσια ποσοστά επίπτωσης με τα τυπικά τους σφάλματα χρησιμοποιήθηκαν ως σημειακές εκτιμήσεις και τα μέτρα της διακύμανσης για μεμονωμένες μελέτες, αντίστοιχα. Τα αποτελέσματα των αναλύσεων εμφανίζονται σε γραφικά ως πλοκές «Δάσους» και διαστρωματώθηκαν ανάλογα με τον τύπο δεδομένων. Μερικές από τις παραλλαγές που παρατηρήθηκαν μεταξύ των αναφερθέντων ποσοστών επίπτωσης θα μπορούσαν να οφείλονται σε διάφορους παράγοντες, συμπεριλαμβανομένων της φυλής, κοινωνικοοικονομικής κατάστασης, τεχνικές μέτρησης και πολιτιστικές επιρροές (1, 2). Για να προσδιοριστεί ο αντίκτυπος της παρατηρούμενης διακύμανσης σε συνολικά ποσοστά, μια ανάλυση ευαισθησίας διεξήχθη αποκλείοντας αυτές τις μελέτες που φαίνεται να είναι ιδιαίτερα ετερογενείς σε σχέση με την πλειοψηφία των μελετών, και συγκεκριμένα τη μελέτη που διεξήχθη από Alasfoor et al. στο Ομάν (3) και οι μελέτες για την Κίνα που πραγματοποιούνται από τους Li et al. (4, 5). Όταν εξαιρέθηκε μόνο η μελέτη Ομάν, το ποσοστό επίπτωσης δισχιδούς ράχης μειώθηκε στο 7,4 / 10.000. Αποκλεισμός των δύο μελετών από τους Li et al. οδήγησε σε μια συνολική συχνότητα εμφάνισης 8,4 / 10.000, ενώ ο αποκλεισμός τόσο της μελέτης Ομάν και των δύο μελετών της Κίνας οδήγησε σε επίπτωση εμφάνισης 7,2 / 10.000. Μία ανάλυση των υποομάδων πραγματοποιήθηκε, επιπρόσθετα των αποτελεσμάτων μετα-ανάλυση, η οποία εξέτασε την επίδραση του τύπου των δεδομένων που χρησιμοποιήθηκαν σε κάθε μελέτη που περιλαμβάνεται στη μετα-ανάλυση, για το ρυθμό εμφάνισης της δισχιδούς ράχης. Η ανάλυση των υποομάδων αποκάλυψε ότι η συχνότητα που παρατηρήθηκε μεταξύ των μελετών που χρησιμοποιούν ζωντανά στοιχεία γεννήσεων μόνο ήταν μόλις 4,5 / 10.000, σε σύγκριση με την συχνότητα εμφάνισης που υπολογίζεται συμπεριλαμβανομένων όλων των μελετών ανεξάρτητα από τον τύπο των δεδομένων, η οποία ήταν 8,4 / 10 000. * Σημείωση: Στη βιβλιογραφία της δισχιδούς ράχης, οι όροι «επιπολασμός» και «επίπτωση» χρησιμοποιούνται ασυνεπώς. Οι Rothman et al. (6) καθορίζουν το ποσοστό των βρεφών που γεννιούνται με κάποια δυσμορφία ως ποσοστό επιπολασμού και όχι σαν ποσοστό επίπτωσης. Η επίπτωση των δυσπλασιών είναι τότε τα συμβάματα μεταξύ του πληθυσμού των εμβρύων. Παρόλα αυτά, γι' αυτή την έκθεση, ο όρος «επίπτωση» χρησιμοποιείται όταν εκθέτονται ποσοστά δισχιδούς ράχης, αφού οι μελέτες που χρησιμοποίησαν διαφορετικούς τύπους δεδομένων, συμπεριλαμβανομένων των δεδομένων σχετικά με τερματισμό της εγκυμοσύνης, είχαν συμπεριληφθεί. 227
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Βιβλιογραφία 1. Gardner BR, Strickland M, Correa A. Application of the automated spatial surveillance program to birth defects surveillance data. [Part A]. Birth Defects Research Part A., Clinical and Molecular Teratology Teratol, 2007, 79:559-564. doi: http://dx.doi. org/10.1002/bdra.20363 PMID:17385687 Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the e ffect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 Li ZW et al. Prevalence of major external birth defects in high and low risk areas in China, 2003. Zhonghua Liu Xing Bing Xue Za Zhi, 2005, 26:252-257. PMID:15941530 Li ZW et al. Extremely high prevalence of neural tube defects in a 4-county area in Shanxi Province, China. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2006, 76:237-240. doi: http://dx.doi.org/10.1002/bdra.20248 PMID:16575897 Rothman KJ, Greenland S, Lash TL, eds. Modern Epidemiology. 3rd ed. Philadelphia, Wolters Kluwer Health/LippincottWilliams & Wilkins, 2008.
2. 3. 4. 5. 6.
228
Τεχνικό Παράρτημα Δ Μετα-ανάλυση της επίδρασης της διατροφής εμπλουτισμένης σε φυλλικό οξύ στα ποσοστά επίπτωσης δισχιδούς ράχης Η επιβάρυνση (επιπρόσθετες περιπτώσεις κυήσεων δισχιδούς ράχης, λόγω έλλειψης εμπλουτισμού των τροφίμων με φολικό οξύ (ΕΤΦΟ - FAFF)) εκτιμήθηκε υπό τις εξής υποθέσεις και θεωρήσεις: ο συνολικός αριθμός των γεννηθέντων ζώντων, χρησιμεύει ως αντιπρόσωπος για όλες τις εγκυμοσύνες (συμπεριλαμβανομένων των αυτόματων αποβολών, θνησιγένειας, και τερματισμών εγκυμοσύνης (TOPS)), διότι η δισχιδής ράχη είναι μια σχετικά σπάνια πάθηση. Ως εκ τούτου, οι μη ανιχνευμένες περιπτώσεις δεν θα έχουν μεγάλη επίδραση στην εκτιμώμενη επίπτωση και ο ΕΤΦΟ θα είχε παρόμοιο αντίκτυπο στην συχνότητα εμφάνισης της δισχιδούς ράχης σε όλο τον κόσμο. Για τον υπολογισμό της επιβάρυνσης, τοπικές εκτιμήσεις υποβάθρου των ποσοστών επίπτωσης της δισχιδούς ράχης υπολογίστηκαν για την αντιμετώπιση των τοπικών παραλλαγών, έτσι ώστε να αποκτηθεί μια πιο ακριβής εκτίμηση. Ο εκτιμώμενος αριθμός των δυνητικά ικανών να προληφθούν εγκυμοσύνων δισχιδών ράχεων βασίσμένου στο μέγεθος της επίδρασης της ΕΤΦΟ υπολογίζεται μόνο από εκείνες τις μελέτες που ανέφεραν συχνότητα εμφάνισης (IR) από δισχιδή ράχη σε γεννήσεις ζώντων, διότι τα παγκόσμια δεδομένα στοιχείων γέννησης ήταν διαθέσιμα μόνο για τις γεννήσεις ζώντων. Επιπλέον, μια ανασκόπηση διεξήχθη για να προσδιορισθεί αν οποιαδήποτε από τη μεταξύ των μελετών ετερογένεια θα μπορούσε να εξηγηθεί από ορισμένες υπολογισμένες συμμεταβλητές, ήτοι ποσοστό εμφάνισης προ- ΕΤΦΟ και το είδος των δεδομένων που χρησιμοποιήθηκαν (γέννηση ζώντος μόνο, ζουν, θνησιγένεια ή TOPs). Η ανασκόπηση έγινε με χρήση του λογισμικού STATA, έκδοση 12.1, με την "metareg" εντολή. Τα αποτελέσματα από την ανασκόπηση έδειξαν ότι η συχνότητα εμφάνισης της δισχιδούς ράχης πριν την θέσπιση του ΕΤΦΟ συσχετίστηκε σημαντικά με την επίδραση του ΕΤΦΟ. Ωστόσο, καμία σημαντική συσχέτιση δεν παρατηρήθηκε μεταξύ του τύπου δεδομένων γέννησης που χρησιμοποιούνται και τα αποτελέσματα του ΕΤΦΟ. Σε γενικές γραμμές, το μοντέλο εξηγεί το 92% της ετερογένειας που παρατηρήθηκε στην αρχική μετά-ανάλυση (βλέπε Σχήμα Δ.1). Η επίπτωση του υπόβαθρου συχνότητας εμφάνισης προ- ΕΤΦΟ για το μέγεθος της επίδρασης του ΕΤΦΟ λήφθηκε υπόψη κατά τον υπολογισμό του αριθμού των δυνητικά ικανών να αποφευχθούν εγκυμοσύνων δισχιδών ράχεων. Αυτή η πληροφορία ελήφθη από την μετάανάλυση. Ως εκ τούτου, αν η επιβάρυνση της δισχιδούς ράχης εκτιμήθηκε χρησιμοποιώντας συχνότητες εμφάνισης και μεγέθη επίδρασης υπολογισμένα από στοιχεία γέννησης ζώντων μόνο, θα μπορούσαν να προληφθούν δυνητικά 37.979 κυήσεις με δισχιδή ράχη. Δεδομένου ότι μόνο γεννήσεις ζώντων περιλήφθηκαν, είναι πιθανόν ότι ο αριθμός των εν δυνάμει να προληφθούν κυήσεων υποτιμάται για διάφορους λόγους. Για παράδειγμα, μια εγκυμοσύνη μπορεί να είναι πιο πιθανό να τερματιστεί αν υπάρχει περίπτωση δισχιδούς ράχης. Επίσης, αν και η βιβλιογραφία δεν προτείνει ότι υπάρχει αυξημένος κίνδυνος θνησιγένειας σε εγκυμοσύνες με δισχιδή ράχη, η έλλειψη πληροφοριών σχετικά με την θνησιγένεια με δισχιδή ράχη μπορεί να προκαλέσει ελάττωση της πραγματικής επίπτωσης. 229
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Σχήμα Δ.1.
Η δισχιδής ράχη ποσοστά επίπτωσης πριν ΕΤΦΟ και η επίδραση του ΕΤΦΟ (αναλογία κινδύνου)
230
Γλωσσάρι
Προσβασιμότητα Ο βαθμός στον οποίο ένα περιβάλλον, υπηρεσία ή προϊόν μπορεί να χρησιμοποιηθεί από όσο το δυνατόν περισσότερους ανθρώπους, και ιδίως από άτομα με ειδικές ανάγκες.
βερνητικών υπηρεσιών υγείας, εκπαίδευσης, επαγγέλματος, κοινωνικών υπηρεσιών και άλλων.
Συν-νοσηρότητα Μια πρόσθετη κατάσταση υγείας όπου ένα άτομο επίσης μπορεί να αντιμετωπίσει, η οποία είναι ανεξάρτητη και δεν σχετίζεται με την πρωταρχική κατάσταση υγείας.
Πρότυπο Προσβασιμότητας Ένα πρότυπο είναι ένα επίπεδο ποιότητας αποδεκτό ως κανόνας. H αρχή της προσβασιμότητας μπορεί να εντολοδοτηθεί από το νόμο ή με συνθήκη, και στη συνέχεια να ορισθεί λεπτομερώς σύμφωνα με κανονισμούς, πρότυπα και κώδικες, τα οποία μπορεί να είναι υποχρεωτικά ή προαιρετικά.
Σύμβαση για τα Δικαιώματα των Ατόμων με Αναπηρία (CRPD =ΣΔΑΑ) Μια διεθνής συνθήκη, που εγκρίθηκε στο πλαίσιο των Ηνωμένων Εθνών το 2006, που καθορίζει τόσο τις αρχές, των γενικών ανθρωπίνων δικαιωμάτων της αξιοπρέπειας, της μη διάκρισης, της συμμετοχής, της προσβασιμότητας και της ισότητας για τα άτομα με ειδικές ανάγκες, όσο και των ειδικών ανθρώπινων δικαιωμάτων που αφορούν όλους τους τομείς της κοινωνικής ζωής - οικογένεια και κοινότητα - την εκπαίδευση, την απασχόληση και την πρόσβαση στην υγεία και στους κοινωνικούς πόρους. Η ΣΔΑΑ έχει σαφή κοινωνική και οικονομική αναπτυξιακή διάσταση.
Βοηθητική συσκευή ή τεχνολογία (AT) Κάθε αντικείμενο ή κομμάτι εξοπλισμού, το οποίο αγοράστηκε, τροποποιηθηκε ή προσαρμόστηκε, που χρησιμοποιείται για να αυξήσει, διατηρήσει ή να βοηθήσει ένα άτομο να εκτελέσει μια εργασία ή δραστηριότητα.
Κοινοτικά Βασισμένη Αποκατάσταση (CBR) Μια στρατηγική στο πλαίσιο της γενικής ανάπτυξης της κοινότητας για την αποκατάσταση, την εξίσωση των ευκαιριών, τη μείωση της φτώχειας και την κοινωνική ένταξη των ατόμων με αναπηρία, που υλοποιείται μέσω των συνδυασμένων προσπαθειών των ατόμων με αναπηρίες, τις οικογένειές τους, καθώς και των σχετικών κυβερνητικών και μη κυ-
Αναπηρία Στην ICF, ένας γενικός όρος για τις βλάβες (impairments), τους περιορισμούς δραστηριότητας και την συμμετοχή, που δηλώνει τις αρνητικές πλευρές της αλληλεπίδρασης ανάμεσα σε ένα άτομο με παθολογική κατάσταση της υγείας του και τους περιβαλλοντικούς και προσωπικούς παράγοντες. 231
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Υποστηρικτικά περιβάλλοντα Φυσικά και ανθρώπινης κατασκευής περιβάλλοντα που υποστηρίζουν τη συμμετοχή ενός ατόμου μέσω της άρσης των εμποδίων και την παροχή των διοργανωτών.
Διεθνής Ταξινόμηση Εξωτερικών Αιτιών Τραυματισμού (ICECI) Μια ταξινόμηση του ΠΟΥ, που κατατάσσει τα είδη των τραυματισμών τις συνθήκες και τις αιτίες τους και που χρησιμοποιείται για τη μέτρηση και τον έλεγχο του συμβάματος των τραυματισμών.
Περιβαλλοντικός Παράγοντας Στην ICF, κάθε χαρακτηριστικό του φυσικού, κοινωνικού και συμπεριφορικού περιβάλλοντος στο οποίο οι άνθρωποι ζουν και διεξάγουν τη ζωή τους, π.χ. προϊόντα και τεχνολογία, το φυσικό περιβάλλον, η υποστήριξη και οι σχέσεις, στάσεις και υπηρεσίες, τα συστήματα και οι πολιτικές.
Διεθνής Ταξινόμηση της Λειτουργικότητας, της Αναπηρίας και της Υγείας (ICF) Μια ταξινόμηση του ΠΟΥπου παρέχει μια τυποποιημένη γλώσσα και εννοιολογικό πλαίσιο για την περιγραφή της υγείας και των σχετικών με την υγεία καταστάσεων λειτουργίας που συνδέεται με την εμπειρία των συνθηκών υγείας.
Λειτουργικότητα Στην ICF, ένας όρος για τις σωματικές λειτουργίες, τις σωματικές δομές, τις δραστηριότητες και τη συμμετοχή. Καταδεικνύει τις θετικές πλευρές της αλληλεπίδρασης ανάμεσα σε ένα άτομο (με κάποιο πρόβλημα υγείας) και τους παράγοντες συνθηκών του ατόμου αυτού (περιβαλλοντικούς και προσωπικούς παράγοντες). Ο όρος "λειτουργία" αναφέρεται αποκλειστικά στις λειτουργίες του σώματος.
Διεθνές Σύνολο Δεδομένων ΚΝΜ Σύνολα δεδομένων που αποτελούνται από δεδομένα σχετικά με τις βασικές κατηγορίες των ΚΝΜ που σχετίζονται με φυσιολογικές και ψυχολογικές λειτουργίες και την ποιότητα της ζωής, τα οποία είναι κατάλληλα για χρήση σε δοκιμές για τη δοκιμή νέων θεραπειών και στρατηγικών αποκατάστασης και συσκευών.
Παθολογική κατάσταση υγείας, δευτερογενής Μια πρόσθετη κατάσταση υγείας όπου ένα άτομο με πρωταρχικό πρόβλημα υγείας μπορεί να εμφανίσει και η οποία προκύπτει από την αυξημένη ευαισθησία ή ευπάθεια που προκαλείται από την πρωταρχική κατάσταση υγείας, π.χ. έλκη πίεσης.
Λεωφορεία που χαμηλώνουν Λεωφορεία σχεδιασμένα να χαμηλώνουν πλευρικά κάτω από την πλευρά της εισόδου των επιβατών για την ευκολότερη πρόσβαση των ατόμων με κινητικές δυσκολίες.
Βλάβη Στην ICF, μια σημαντική απόκλιση στη δομή του σώματος ή τη φυσιολογική λειτουργία των συστημάτων του σώματος (συμπεριλαμβανομένων των ψυχικών λειτουργιών), με βάση τα στατιστικά πρότυπα του πληθυσμού.
Ποσοστό θνησιμότητας Η αναλογία των θανάτων σε έναν καθορισμένο πληθυσμό ή ομάδα ατόμων, σε καθορισμένη περιοχή και χρονική περίοδο.
Επίπτωση του ΚΝΜ Ο αριθμός των νέων κρουσμάτων του ΚΝΜ κατά τη διάρκεια μιας συγκεκριμένης χρονικής περιόδου. 232
Μη-Τραυματική Κάκωση του Νωτιαίου Μυελού (ΜΤΚΝΜ = NTSCI) Οποιαδήποτε βλάβη του νωτιαίου μυελού από μη τραυματική αιτία, π.χ. συγγενείς / γενετικές ανωμαλίες, όπως η δισχιδής ράχη ή επίκτητη βλάβη που
Γλωσσάρι
προκαλείται από μόλυνση, απώλεια παροχής αίματος (έμφραγμα), συμπίεση από καρκίνο ή όγκο, ή από βραδεία εκφύλιση των σπονδύλων λόγω της οστεοαρθρίτιδας.
Μεταφορά ατόμων με αναπηρία Μια εναλλακτική λειτουργία ευέλικτης ιδιωτικής ή δημόσιας μεταφοράς (π.χ. μίνι-λεωφορεία ή ταξί) που δεν ακολουθεί σταθερά δρομολόγια ή δρομολόγια, με σκοπό να καλύψει τις ανάγκες μεταφοράς των ατόμων με αναπηρίες, των ηλικιωμένων, ή όποιον δεν είναι σε θέση να χρησιμοποιήσει τους ενιαίους τρόπους μεταφοράς. Επίσης γνωστό ως Υπηρεσίες Ειδικών Μεταφορών ΥΕΜ (STS).
σκευές κινητικότητας με σκοπό τη βελτίωση της λειτουργίας. Οι ορθώσεις περιλαμβάνουν εξωτερικές συσκευές που έχουν σχεδιαστεί για να υποστηρίξουν, να ευθειάσουν ή να βελτιώσουν τη λειτουργία ενός μέρους του σώματος, ενώ οι προσθέσεις περιλαμβάνουν τεχνητή εξωτερική αντικατάσταση ενός μέρους του σώματος.
Εύλογες προσαρμογές Απαραίτητες και κατάλληλες τροποποιήσεις ή προσαρμογές, που δεν επιβάλλουν δυσανάλογο ή περιττό φόρτο εργασίας, για να εξασφαλιστεί ότι τα άτομα με ειδικές ανάγκες μπορούν να ασκήσουν τα ανθρώπινα δικαιώματά τους σε ισότιμη βάση με τους άλλους.
Έλκη πίεσης (έλκη) Εντοπισμένοι τραυματισμοί του δέρματος και του υποκείμενου ιστού, συνήθως πάνω από ένα οστό, που προκύπτουν από την πίεση μόνο ή σε συνδυασμό με την τριβή και που κυμαίνονται από ήπιες πληγές ή τραύματα έως σοβαρή καταστροφή ιστού.
Αποκατάσταση Ένα σύνολο των μέτρων που βοηθά τα άτομα που βιώνουν την αναπηρία (ή είναι πιθανό να βιώσουν) για την επίτευξη και διατήρηση της βέλτιστης λειτουργίας σε αλληλεπίδραση με το περιβάλλον τους.
Επιπολασμός των ΚΝΜ Το συνολικό άθροισμα όλων των περιπτώσεων ΚΝΜ που βρίσκονται σε ένα δεδομένο πληθυσμό και σε μία δεδομένη χρονική στιγμή.
Η φροντίδα ανάπαυλας Η παροχή βραχυπρόθεσμης, προσωρινής επαγγελματικής φροντίδας αντικατάστασης των άτυπων φροντιστών, όπως μέλη της οικογένειας, για τους ανθρώπους που χρειάζονται τη φροντίδα που διαφορετικά θα χρειαζόταν να τοποθετηθούν μόνιμα σε μια εγκατάσταση έξω από το σπίτι.
Προοδευτική συνειδητοποίηση Η αρχή του δικαίου για τα ανθρώπινα δικαιώματα που αναγνωρίζει ότι ορισμένα οικονομικά και κοινωνικά ανθρώπινα δικαιώματα - όπως το δικαίωμα στην υγεία - μπορεί να είναι δύσκολο για τα κράτη να επιτευχθεί σε σύντομο χρονικό διάστημα, λόγω των περιορισμένων πόρων, αλλά απαιτεί από αυτά να επιτύχουν ότι μπορούν με τις δυνατότητές τους, και να επιτύχουν σταδιακά περισσότερα καθώς περισσότεροι πόροι καθίστανται διαθέσιμοι.
Σχολεία - εσώκλειστα, ενωποιημένα, ειδικά Στα σχολεία ολοκληρωμένης φροντίδας (inclusive schools), τα παιδιά με αναπηρία παρακολουθούν κανονικά μαθήματα με ομότιμους για την ηλικία τους συνομήλικους, ακολουθούν το πρόγραμμα σπουδών στο βαθμό που αυτό είναι εφικτό και είναι εφοδιασμένα με πρόσθετες υπηρεσίες και υποστήριξη ανάλογα με τις ανάγκες των παιδιών. Στα ενοποιημένα σχολεία (integrated schools), στα παιδιά με αναπηρία παρέχονται ξεχωριστές τάξεις και πρόσθετες υπηρεσίες μέσα στα γενικά σχολεία. Στα ει233
Προσθετικός-ορθωτικός Ένας επαγγελματίας υγείας που παρέχει προσθετικές και ορθωτικές συσκευές καθώς και άλλες συ-
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
δικά σχολεία (special schools), παρέχονται στα παιδιά με αναπηρίες εξειδικευμένες υπηρεσίες με ξεχωριστές δομές από τα γενικά εκπαιδευτικά ιδρύματα.
Ταξίδιωτική αλυσίδα Όλα τα στοιχεία που συνθέτουν ένα ταξίδι, από την αφετηρία μέχρι τον προορισμό, συμπεριλαμβανομένης της πρόσβασης των πεζών, οχημάτων και των σημείων μεταφοράς.
Κοινωνική στέγη Η κοινωνική στέγαση είναι η στέγαση που παρέχεται, συνήθως από τις τοπικές κυβερνήσεις ή ΜΚΟ, με χαμηλό κόστος και σε μια ασφαλή βάση σε άτομα με ανάγκες στέγασης (ονομάζεται επίσης "οικονομικά προσιτή στέγαση" ή "δημόσια στέγαση").
Ο καθολικός σχεδιασμός Αρχές για το σχεδιασμό των προϊόντων, περιβαλλόντων, προγραμμάτων και υπηρεσιών που μπορούν να χρησιμοποιηθούν από όλους τους ανθρώπους, στο μεγαλύτερο δυνατό βαθμό, χωρίς την ανάγκη για πρόσθετη προσαρμογή ή ειδικό σχεδιασμό.
Κοινωνική προστασία Τα κοινωνικά προγράμματα που αποσκοπούν στη μείωση της στέρησης και ανικανοποίητη ανάγκη που απορρέει από συνθήκες, όπως η φτώχεια, η ανεργία, το γήρας και η αναπηρία.
Επαγγελματική αποκατάσταση Προγράμματα που αποσκοπούν στην αποκατάσταση ή την ανάπτυξη των ικανοτήτων των ατόμων με ειδικές ανάγκες για να εξασφαλίσουν, να διατηρήσουν και να προχωρήσουν στην κατάλληλη θέση εργασίας, π.χ. την επαγγελματική κατάρτιση, συμβουλευτική εργασία, και τις υπηρεσίες ευρέσεως
Κάκωση νωτιαίου μυελού (ΚΝΜ) Κάθε τραυματισμός του νωτιαίου μυελού από τραυματικά και μη τραυματικά αίτια, (βλέπε επίσης τους ορισμούς των τραυματικών και μη τραυματικών ΚΝΜ σε αυτό το γλωσσάρι). Βλάβη ή τραύμα στο νωτιαίο μυελό, που έχει σαν αποτέλεσμα μια βλάβη ή απώλεια της λειτουργίας.
Μητρώο Τραυματισμών Νωτιαίου μυελού Μια βάση δεδομένων που συλλέγει ομοιόμορφες κλινικές και άλλες πληροφορίες σχετικά με την κάκωση νωτιαίου μυελού σε έναν πληθυσμό πάνω στο χρόνο για να αξιολογηθούν τα αποτελέσματα για έναν πληθυσμό για επιστημονικό, κλινικό ή πολιτικό σκοπό.
Τραυματική κάκωση νωτιαίου μυελού (ΤΚΝΜ) Κάθε τραυματισμός του νωτιαίου μυελού που προκαλείται από τραύμα ή βλάβη που προκύπτει από την εφαρμογή μιας εξωτερικής δύναμης οποιουδήποτε μεγέθους, π.χ. σε περίπτωση τροχαίων, πτώσεων ή πράξεων βίας. 234
Eυρετήριο
[Α] Αγγειακές διαταραχές 23 αγγειακές επιπλοκές 73 Αδελφικές σχέσεις 140-1 Αθλήματα γηπέδου 60 Αθλητική συμμετοχή 6-7, 145 Αϊτή, τροποποιώντας στάσεις 112 Αιτιολογία ΚΝΜ 15, 20-1, 23-4 Αιχμηρά αντικείμενα 52, 53 ακαδημαϊκή κοινότητα 218 Αμαξίδιο Ανάγκη για 81 Ανεπαρκής αξιολόγηση 105 Είδη 83-4 Μη χρήση και εγκατάλειψη 105, 114 Παροχή υπηρεσιών 105 Πρότυπα προσβασιμότητας 166 Τεχνολογικές εξελίξεις 116 Υπηρεσίες χρηστών στην Ρουμανία 114 Χώρος εργασίας 195 Άμεσο κόστος ΚΝΜ 28-9 Αναπαραγωγική υγεία 79, 88 Αναπηρία Εννοιολογική αλλαγή 7 Κοινωνική ανταπόκριση 7-8 Ορισμός γλωσσάριο 231 Αναπηρία γλωσσάριο 231 Αναπνευστική ανεπάρκεια 74 αναπνευστική λειτουργία 74 Ανατομία νωτιαίου μυελού 5 Ανατροφή 140-2, 188-9 Ανεκπλήρωτες ανάγκες 99-101 Ανεξαρτησία 86, 132, 140, 184 Ανεξάρτητη διαβίωση 7-8 Ανεπίσημη φροντίδα 136-8 Ανέχεια 3, 115, 197-8 Ανθρώπινα δικαιώματα 8-9 Ανθρώπινοι πόροι 108-10, 119
Αντίκτυπος ΚΝΜ 4, 71-2, 213 αποδοχή 142 Αποκατάσταση 71, 77-83, 215 Ανεκπλήρωτες ανάγκες 99-101 Επαγγελματική εκπαίδευση 110 Κοινοτικά βασιζόμενη 106, 136, 231 Ορισμός 77, 233 Προσαρμογή στην ΚΝΜ 142-3 Αποκατάσταση στη κοινότητα 106, 135-6, 231 Απόπειρες αυτοκτονίας 21, 226 Μετά την ΚΝΜ 26 αρμόζουσα τεχνολογία 75 Άσκηση 81, 137 Ασφάλισης, δεδομένα 30-1 Ασφάλισης, σχήματα 115-6 ατελεκτασία 74 Ατελής βλάβη 6, 72 Αυστραλία ανθρώπινοι πόροι 109-110 δευτερογενείς επιπλοκές 26 διαθεσιμότητα υπηρεσιών 104 επιπολασμός της ΤΚΝΜ 16, 17, 212 επίπτωση μη τραυματικής ΚΝΜ 23 επίπτωση τραυματικής ΚΝΜ 18, 19-20 θέματα εισοδήματος 197 ιπτάμενες κλινικές 107 κατάλογοι κατοικιών 166 κεντρικό μητρώο ασθενών με ΚΝΜ 31 κίνδυνος θνησιμότητας 25 κόστος της ΚΝΜ 28, 29, 213 μείωση στην ΤΚΝΜ σχετιζόμενη με αυτοκινητιστικά 214 προνοσοκομειακή αντιμετώπιση 26 συμπεριφορές των επαγγελματιών υγείας 133 σχετιζόμενη με βία ΚΝΜ 21 αυτοάνοσες διαταραχές 23 Αυτοαπασχόληση 196-7, 216 Αυτοβοήθειας ομάδες 143-4 Αυτοδιαχείριση 107-8
235
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Αυτοεκτίμηση 142-3 Αυτοκινητιστικά ατυχήματα 212, 214 αυτονομία 86 Αυτοπεποίθηση 143 Αυτοτραυματισμός 22, 53 αυχενική ΚΝΜ 6 Αφγανιστάν ΚΝΜ σχετιζόμενη με βία 21 μικρότερες μονάδες ΚΝΜ 105 Αφρική δισχιδής ράχη 184 στέγαση 160 τραυματισμοί σε ορυχεία 54-5 υποστηρικτική τεχνολογία 103
Στάση των επαγγελματιών υγείας 133 Συμμετοχή στην εκπαίδευση 183,187 Γερμανία Δημόσια κτήρια 169 Συμμετοχή σε αθλήματα 145 Γκάνα, θέματα εισοδήματος 198 Γνώσεων, κενά 109, 163, 213 γνωσιακή συμπεριφορική θεραπεία 143 Γονιμότητα 79 Γουατεμάλα, υποστηρικτική τεχνολογία 112
[Δ] Δανία Κοινωνική στέγαση 166 Νομοθεσία και πολιτικές εκπαίδευσης 183 Δασκάλων, στάσεις 188-9 δεδομένων, θέματα και προβλήματα 32-3 δεδομένων, πηγές 30-2, 227 δεδομένων, συλλογή 33-4, 113, 115, 216-7 Δευτεροβάθμια πρόληψη 47 Δευτερογενείς καταστάσεις 73-6, 87, 216 Αποτρέψιμες 100 Θέματα εργασίας 196 Κίνδυνος θνησιμότητας 25 Ορισμοί γλωσσάριο 232 Δημογραφικές τάσεις 22 δημογραφική γήρανση 14, 23, 165, 212 Δημόσια κτήρια 161, 169-171, 172 Δημόσια υγεία 211-2 Δημόσιες συγκοινωνίες 158, 160-1, 168 διαδικασία προσαρμογής στην ΚΝΜ 82-3, 141-5 Διαδικτυακές πηγές 107 Διαδικτυακές πηγές 107, 185 Διαζύγιο 138, 213 διαθεσιμότητα υπηρεσιών 104 Διαλείπων καθετηριασμός 78 Διατάξεις της Πράξης για τους Αμερικάνους με Αναπηρία 162, 195 Διαφορές φύλλου Μη τραυματική ΚΝΜ 23 Ρόλος φροντιστή 134-5 Τραυματική ΚΝΜ 19,22 Διαφορές φύλλων Ρόλος φροντιστή 134-5 Μη τραυματική ΚΝΜ 23 Τραυματική ΚΝΜ 19, 22 διαχείριση κύστης 73, 77-8 Διαχειριστές σχολείων 188-9 Διεθνή Πρότυπα Νευρολογικής Ταξινόμησης ΚΝΜ 31-3 Διεθνής Οργανισμός Προτύπων (ISO) 112
[Β] Βάδισης, βοηθήματα 83-4 Βαρσοβία χωρίς εμπόδια 169 Βαρύτητα βλάβης Αντίκτυπος υγείας 72 Έκταση αναπηρίας 6 Κίνδυνος θνητότητας 26 Κόστος 27-8 Βηματοδότης διαφράγματος 75 Βήχας 74-5 Βιετνάμ, μικρές μονάδες ΚΝΜ 105 Βλάβη νωτιαίου μυελού Ορισμός 33, 234 Ιατρική διάσταση 5-6 Ιστορική διάσταση 6-7 Βλαστοκυτταρα, θεραπεία 117-8 βοήθεια 134-7 Βοηθήματα μεταφοράς 84 βοηθοί στην τάξη 187, 189 Βουλγαρία, δημόσια κτίρια 169 Βραζιλία άτυπη φροντίδα 134 δημογραφικές τάσεις στην ΤΚΝΜ 22 εκστρατεία υπέρ της προσβασιμότητας 162 ΚΝΜ σχετιζόμενη με βία 21 μεταφορικά μέσα 168 μικρότερες μονάδες ΚΝΜ 105
[Γ] Γαλλία Επίπτωση τραυματικής ΚΝΜ 19, 212 Κίνημα ατόμων με αναπηρία 145 ΚΝΜ σχετιζόμενη με αθλητικές δραστηριότητες 21 Ομάδες αυτοβοήθειας 143 Προσαρμογή στην ΚΝΜ 141
236
Eυρετήριο
Διεθνής Στοιχειοθέτηση Δεδομένων ΚΝΜ 31-3, 232 Διεθνής Ταξινόμηση Εξωγενών Αιτίων Βλάβης (ICECI) 31-3, 232 Διεθνής Ταξινόμηση Λειτουργικότητας, Αναπηρίας και Υγείας (ICF) 8, 34, 232 Διεθνής Ταξινόμηση Νοσημάτων (ICD) 32-4 Δισχιδής ράχη Ενηλικίωση 140 Επαγγελματική συμβουλευτική 199 Επίπτωση 23, 232 Θέματα εργασίας 190 Κόστος 28 Οικογενειακή δυσλειτουργία 140 Πρόληψη 55-7, 214, 229-30 Συμμετοχή στην εκπαίδευση 182-3, 184 Δράση της Υποστηρικτικής Τεχνολογίας (1998) 112 δυσαυτονομία 73
[Ε] Εγκυμοσύνη 79 Εθελοντικές οργανώσεις 134 Εθνικές μελέτες 29, 30, 31 Ειδικά σχολεία 233 Ειδικές υπηρεσίες μεταφορών 167-8 Ειδικών, υποστήριξη 106 Εικονικά περιβάλλοντα 116 Εισόδημα 197 Εισόδημα από εργασία 197 εισρόφηση 74 Εκπαίδευση Επαγγελματίες αποκατάστασης 109 Επαγγελματική 197-199 Θέματα προσβασιμότητας 162-3 Ικανότητες συνεργασίας 142 Μη υγειονομικοί επαγγελματίες 110 Οικογένειες 110 Προσωπικοί βοηθοί 136-7 Τροποποιώντας συμπεριφορές 132, 134 Εκπαίδευσης, πηγές 106,108 έκρηξη βόμβας 52 έκτοπη οστεοποίηση 74 Εκφυλιστικά νοσήματα 23 Ελ Σαλβαδόρ, νομοθεσία οπλοκατοχής 53 Ελβετία, πρόγραμμα αποζημίωσης 116 έλεγχος συντήρησης προσβασιμότητας 170 Έλκη κατακλίσεως 26, 76-7, 233 Ελλάδα Διαφορές φύλλων στην επίπτωση τραυματικής ΚΝΜ 19 Σχέσεις συντρόφων 139 Ελλείμματα νευρικού σωλήνα 54, 214 Ελλειπής αναφορά ΚΝΜ 33
Ελπίδα 142 Έμμεσο κόστος ΚΝΜ 28, 29 Εμμηνόρροια 79 Εν τω βάθει φλεβοθρόμβωση 73 ενισχυόμενη και εναλλακτική επικοινωνία 84 Ενίσχυση 216 Ενοποιημένα σχολεία 233 Επαγγελματίες κοινωνικής φροντίδας 217 Επαγγελματική αποκατάσταση 191-2, 234 Επαγγελματικοί τραυματισμοί 21, 212 Πρόληψη 54,56, 214 Επανορθωτική χειρουργική 81 Επαφή με αναπήρους 132 Επείγουσα περίθαλψη βλέπε προνοσοκομειακή περίθαλψη Επιδημιολογικοί δείκτες ΚΝΜ Αιτιολογία 15, 20-21, 23 Δεδομένων, θέματα και προβλήματα 33-34 Δεδομένων, πηγές 2,παραρτημαΒ 30-32, 225 Δείκτες θνησιμότητας 16,26 Επιπολασμός 14, 15-7, 211-2, 233 Επίπτωση 15, 17-9, 22, 211-2, 232 Μέθοδοι συστηματικής ανασκόπησης 221-3 Προτάσεις 34-5 Ρυθμός θνητότητας 14 Επίδομα αναπήρων φοιτητών 187 Επιδόματα διαβίωσης 198-9 Επίπεδο βλάβης Αντίκτυπος υγείας 72 Έκταση ανάπηρίας 6 Κίνδυνος θνησιμότητας, Επιπλοκές της ΚΝΜ βλέπε δευτερεύουσες παθήσεις Κόστος 28 Επιπολασμός ΚΝΜ 14, 15-7, 211-2, 233 Επίπτωση ΚΝΜ 15, 17-9, 22, 211-2, 232 Επίσημη φροντίδα 136 Επισκεψιμότητα 164 Επ;iτευξη αποτελεσματικής εκπαίδευσης 142 Επιτήρηση 110 Έρευνα στην ΚΝΜ 7, 217 Αναδυόμενες θεραπείες Ενίσχυση συστήματος υγείας 116-118, 120 Θέματα προσβασιμότητας 162 Στάσεις, σχέσεις και προσαρμογή 147 Συλλογή δεδομένων 35 Εσθονία Δείκτης θνησιμότητας 26 Επίπτωση ΤΚΝΜ 18 Εταιρεία για την Έρευνα στην Πρόσβαση, στην Εκπαίδευση, τις Μεταβάσεις και την ισότητα (CREATE) 186 Ευ ζην 88 Ευαισθητοποίηση σε θέματα αναπηρίας 132, 189
237
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Ευέλικτη στέγαση 166 εύλογες προσαρμογές-διευκολύνσεις 108, 181, 233 εργασιακός χώρος 195-196 σχολεία 186-187 Εύλογη στέγαση 109, 181, 186-7, 195, 233 Ευνοϊκά περιβάλλοντα 170, 213, 233 Δημόσια κτήρια 160, 169-70, 172 Μεταφορές 83, 159, 160-1, 166-7, 172, 191-2, 213-4 Προτάσεις 171-2 Στέγαση 160, 163-6, 172 Συμμετοχή στην εκπαίδευση 186-7 Συμμετοχή στην εργασία 191-2, 196 Ευρωπαϊκή ομοσπονδία ΚΝΜ (ESCIF) 144 Θέση πολιτικής 103
ΚΝΜ σχετιζόμενη με αθλήματα 21 ΚΝΜ σχετιζόμενη με αλκοόλ/ φάρμακα 21 ΚΝΜ σχετιζόμενη με βία Κολλεγιακή/ πανεπιστημιακή εκπαίδευση 183 Κόστος ΚΝΜ 27, 115-6 Παρεμβάσεις οικογενειακής στήριξης 132 Πρόσβαση σε υπηρεσίες υγείας 104 Πρότυπα προσβασιμότητας 161 Φυλή και εργασία 191 Χρηματοδότηση εκπαίδευσης 187 Χρηματοδότηση στέγασης 162
[Θ] Θάνατος βλ δείκτης θνησιμότητας Θεραπεία στην ΚΝΜ 116-8 θεωρία αξιολόγησης 141 Θρησκεία 138 Θωρακική ΚΝΜ 6
[Ζ] Ζάμπια, βοηθητική τεχνολογία 104 Ζιμπάμπουε Βοηθητική τεχνολογία 104 Δημόσια κτήρια 161 Θέματα εισοδήματος 190 Θέματα εργασίας 197 Ζώνες ασφαλείας 20, 49, 214
[Ι] Ιαπωνία, θέματα προσβασιμότητας) 162 Ιατρική διάσταση ΚΝΜ 5-7 Ιατρική τήρηση αρχείων 34 Ιατρικοί ορισμοί 33 Ιδιωτικές μεταφορές 160, 168 Ιδιωτικός τομέας 103, 163-164, 218-219 Ικανοποίηση στη ζωή 141-142 Ικανότητες συνεργασίας 138 Ινδία Εκπαιδευτική υποστήριξη 187 Θέματα εισοδήματος 197 Θέματα εργασίας 190,193, 194 Συντροφικές σχέσεις 139 Σχετιζόμενη με λοιμώξεις ΚΝΜ 23 Ιός γρίππης 26 Ιππασία 60 Ιππουριδική συνδρομή 6, 72 Ιράν Επιπολασμός ΤΚΝΜ 16 Ικανότητες συνεργασίας 138 Ιρλανδία 19, 169, 187 Δημόσια κτήρια 169 Διαφορές φύλλων στην επίπτωση ΤΚΝΜ 19 Επίπτωση ΤΚΝΜ 18 Χρηματοδότηση εκπαίδευσης 187 Ισλανδία Επιπολασμός ΚΝΜ 16 Επίπτωση ΚΝΜ 18 Ισπανία Επίπτωση μη τραυματικής ΚΝΜ 23 Επίπτωση τραυματικής ΚΝΜ 18
[Η] Ηγεσία 101-2,118-9 ηλικία μη τραυματική ΚΝΜ 22 τραυματική ΚΝΜ 18-22 Ηνωμένα Αραβικά Εμιράτα, δημόσια κτήρια 161 Ηνωμένο Βασίλειο Αυτοαπασχόληση 197 Δημογραφικές τάσεις ΚΝΜ 22 Μεταφορά με ταξί 167-8 Νομοθεσία κατά των διακρίσεων 169 Ομάδες αυτοβοήθειας 143 Πρόληψη τραυματισμών από όπλα 53 Στέγαση 160, 164-6 Συμμετοχή στην εκπαίδευση 183,186-7 Συντροφικές σχέσεις 139 ΗΠΑ Assistive Technology Act (1998) 112 Αθλητική συμμετοχή 145 Δημογραφικές τάσεις στην ΤΚΝΜ 22 Δημόσια κτήρια 169 Διαθεσιμότητα Υπηρεσιών 104 Διαφορές φύλλου στην επίπτωση τραυματικής ΚΝΜ 19 Επίπτωση τραυματικής ΚΝΜ 19-20 Θέματα εργασίας Κεντρικό μητρώο ΚΝΜ 28 Κίνδυνος θνησιμότητας 25-26
238
Eυρετήριο
Ισραήλ ΚΝΜ σχετιζόμενη με απόπειρα αυτοκτονίας 21 Πρόληψη δισχιδούς ράχης 54 Ιστορική αναδρομή στην ΚΝΜ 6-7 Ισχαιμική μυοκαρδιοπάθεια 26, 86 Ιταλία, μεταφορές FLIPPER 167
[Κ] καθετηριασμός 73, 78 Καθολικός σχεδιασμός 75, 161, γλωσσάριο 234 "καλειδοσκόπιο", πρόγραμμα 193 Καναδάς Rick Hansen Cord Injury Registry 31-33 αυτό-απασχόληση 197 δημοτική εργαλειοθήκη προσβασιμότητας 169 επιπολασμός ΚΝΜ 16, 213 επίπτωση μη τραυματικής ΚΝΜ 17 επίπτωση τραυματικής ΚΝΜ 19-21 κίνδυνος θνησιμότητας 14 ΚΝΜ σχετιζόμενη με αλκοόλ/φάρμακα 21 ΚΝΜ σχετιζόμενη με τη βία 21 κοινωνικές συμπεριφορές 132 κοινωνική μέριμνα 187 κόστος της ΚΝΜ 27-28 στέγαση 164-165, 166 καρδιαγγειακό σύστημα 86-88 Καρκίνος 26, 33, 53, 54, 222 Κατ’ οίκον εκπαίδευση 182 Καταδύσεις 58, 60 Καταδύσεις ανοιχτής θάλασσας 60 Κατάθλιψη 8, 82, 142, 191, 212 Κατανομή πηγών 4 Κατάρ, επίπτωση ΚΝΜ 19 Κατοικίδια βοηθοί 195 κεντρικό μητρώο 30, 32, γλωσσάρι 234 κεντρικοποίηση της αγωγής 104 Κέντρο για την Αποκατάσταση των Αναπήρων 193 Κένυα Ανεπίσημη φροντίδα 132 Εκπαίδευση γονέων 140 Κοινωνική υποστήριξη 135 Στάσεις κοινότητας 132 Στέγαση 164 Συμμετοχή στην εκπαίδευση 182-186 Κίνα αποκατάσταση μετά το σεισμό Sichuan 5, 102 επίπτωση τραυματικής ΚΝΜ 18 ΚΝΜ σχετιζόμενη με πτώσεις 23 οικογενειακές σχέσεις 140 συντροφικές σχέσεις 140 Κίνδυνος θνησιμότητας 3, 15, 23, 25-6, 213
Κίνημα ατόμων με αναπηρία 6, 145 Κινητές συμβουλευτικές ομάδες 106 Κίνητρα 108 144 Κλίμακας Ανικανότητας ASIA 6, 32 ΚΝΜ σχετιζόμενη με αθλήματα 21, 213 Πρόληψη 54 ,60, 214 ΚΝΜ σχετιζόμενη με δραστηριότητες αναψυχής 21, 213 Πρόληψη 57-8, 214 Κοινωνικά δίκτυα 141, 144, 187 Κοινωνική πρόκληση ΚΝΜ 7 Κοινωνική προστασία 187-188, γλωσσάριο 234 Κοινωνική στέγαση 160, 166, γλωσσάριο 234 Κοινωνική στήριξη 197, 198 Κοινωνική υποστήριξη 135, 187, 191 Κοινωνικο-οικονομικό υπόβαθρο 113, 114, 115 Κολομβία Εκπαίδευση σε θέματα προσβασιμότητας 168 Νομοθεσία οπλοκατοχής 53 Κορέας, Δημοκρατία, σχετιζόμενη με άθληση ΚΝΜ 21 Κόστος ΚΝΜ 4, 16, 27, 28, 164, 213 Κουλτούρα της προσβασιμότητας 171 Κράνος μοτοσυκλέτας 51 Κυβέρνηση 101-102, 118-119 Κυβερνητικές δράσεις 217 Κυκλοφοριακή αντιμετώπιση 51
[Λ] Λειτουργία εντέρου 78 Λειτουργία του αυτόνομου νευρικού συστήματος 72 Λειτουργικότητα 80-1, γλωσσάριο 232 Λεπτότερο περιθώριο υγείας 86, 212-4 Λεωφορεία 167 Λεωφορεία που "χαμηλώνουν" 167, γλωσσάριο 232 Λίβανος, ευαισθητοποίηση στην αναπηρία 189 Λοιμώδη νοσήματα
[Μ] Μάθηση μέσω διαδικτύου 110 Μαλαισία Εκπαίδευση σε θέματα προσβασιμότητας 163 Θέματα εισοδήματος 197 Θέματα εργασίας 190 Συμμετοχή στην εκπαίδευση 186 Μαλάουι, υποστηρικτική τεχνολογία 103 Μεξικό Εκστρατείες προσβασιμότητας 162 Μεταφορές 168 Μέσου εισοδήματος χώρες Ανεκπληρωτες ανάγκες υποστηρικτικής τεχνολογίας 100 Ανθρώπινοι πόροι 110 Διαβίωση με ΚΝΜ 3
239
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Επιπολασμός ΚΝΜ 212 Θέματα εργασίας 191 Κοινωνική προστασία 197 Κόστος ΚΝΜ 115 Ομάδες αυτοβοήθειας 144-5 Παροχή αμαξιδίων 104 Συμμετοχή στην εκπαίδευση 182-3, 185 Υποστηρικτική τεχνολογία 112, 213 Μεταβατικά προγράμματα 193 Μετατραυματική διαταραχή 140-2 Μεταφορές 84, 159-61, 167-8, 172, 191-2, 213 μέτρα ασφαλείας για παιδιά επιβάτες 51 Μη κυβερνητικές οργανώσεις (ΜΚΟ) 48, 103, 105, 107, 108, 110, 136, 144, 188, 198, 218 Μη τραυματική ΚΝΜ Αίτια 6 Αιτιολογία 23 Αυξανόμενη επίπτωση 17-8 Ελλειπής αναφορά 33 Επιπολασμός 17, 212 Επίπτωση 23 Κόστος 27-8 Οξεία αντιμετώπιση 76 Ορισμοί γλωσσάριο 233 Πρόληψη 53-4 Μητρώα ΚΝΜ 30-1, 34, γλωσσάριο 234 Μητρώο ΚΝΜ "Rick Hansen" 30-1 Μητρώο Προσβάσιμων κατοικιών Λονδίνου 164 Μηχανικός αερισμός 74 Μικρές μονάδες/ ομάδες ΚΝΜ 105 Μικρότερο περιθώριο υγείας 86, 212-3, 214 Μικροχρηματοδότηση 197 Μοζαμβίκη Μεταφορές 168 Υποστηρικτική τεχνολογία 103 Μόνιμος καθετήρας 78 Μοντέλο πορείας ζωής 140 Μπαγκλαντές θέματα απασχόλησης 190, 193-4 κοινωνική υποστήριξη 136 στάση ευρύτερης κοινωνίας 132 μπάνιο 85 Μποτσουάνα, ευαισθητοποίηση σε θέματα αναπηρίας 189 Μυελικός κώνος 4, 72 Μυοσκελετικό άλγος 75 Μυοσκελετικό σύστημα 88
"Accessible Christchurch" πρόγραμμα 171 Ομάδες αυτοβοήθειας 137 Πρόγραμμα επαγγελματικής αποκατάστασης 116 Καλειδοσκόπιο 193 Πρόληψη τραυματισμού στο ράγκμπι 58-9 Προσωπικοί βοηθοί 137 Σχέδιο αποζημίωσης 116 Νεοπλασματικοί όγκοι 23 Νεπάλ ΚΝΜ σχετιζόμενη με πτώσεις 21 Θέματα εισοδήματος 197 Νευρικές ρίζες 5 Νευρογενές έντερο 78 Νευρολογική λειτουργία 26, 72, 88 Νευρολογικός έλεγχος συσκευών 116 Νευρομυοσκελετικές επιπλοκές 74 Νευροπαθητικός πόνος 75 Νησιά Φίτζι, ανεπίσημη φροντίδα 135 Νιγηρία Εκπαίδευση και υποστήριξη φροντιστών 110 Κίνδυνος θνησιμότητας 27 Δημόσια κτήρια 161 Αυτοκινητιστικά ατυχήματα 21 ΚΝΜ σχετιζόμενη με άθληση 21 Κόστος ΚΝΜ 28, 115, 213 Νομοθεσία 51, 53, 101, 169-70, 183-4, 195 νομοθεσία κατά των διακρίσεων 169, 195 Νόμοι για οδήγηση και αλκοόλ 51 Νορβηγία Χρηματοδότηση στέγασης 165 Επιπολασμός ΤΚΝΜ 16 Δευτερογενείς καταστάσεις 26 Σταθμισμένος δείκτης θνησιμότητας 25 ΚΝΜ σχετιζόμενη με βία 21 Επίπτωση ΤΚΝΜ 19, 20 Νοσήματα καρδιάς 26, 87 νοσοκομείο Boston City 6 Νότια Αφρική Δημόσια κτήρια 161 Επίσημη φροντίδα 138 ΚΝΜ σχετιζόμενη με βία 21 Μεταφορές 168 Πρόληψη ΚΝΜ σχετιζόμενων με εξορύξεις 56-7 Πρόληψη τραυματισμών στο ράγκμπι 59 Συμμετοχή στην εκπαίδευση 183, 186 Ντους 86 Νωτιαία νόσος 23
[Ν] Ναμίμπια, υποστηρικτική τεχνολογία 103 Νάρθηκες άκρων 83 Νέα Ζηλανδία
[Ο] Όγκοι 23 Οδηγίες βασισμένες σε στοιχεία 118
240
Eυρετήριο
Οδικός σχεδιασμός 51 Οικιακές προσαρμογές 163 Οικογενειακή κατάσταση 140 Οικογένειες Εκπαίδευση και υποστήριξη 110 Σχέσεις 138, 213 Ως φροντιστές 134-6 Ολλανδία RegioTaxi Kan support 167 Ανεκπλήρωτες ανάγκες υποστηρικτικής τεχνολογίας 100-4 Ανεπίσημη φροντίδα 135 Επίπτωση ΤΚΝΜ 18 Θέματα εργασίας 190, 194 Ικανοποίηση διαβίωσης μετά ΚΝΜ 141 Κοινωνική στέγαση 166 Παροχή αμαξιδίων 213 Συντροφικές σχέσεις 139 Ολοκληρωμένης φροντίδας, σχολεία 233 οξεία φάση 71, 76-7, 215-6 Όπλα 21, 51, 53, 214 Οπλισμός 21, 51, 214 Οργανώσεις ατόμων με αναπηρία 218 Οργανώσεις και δίκτυα καταναλωτών 144 Ορθοστατική υπόταση 73 Ορθώσεις 83 Όρια ταχύτητας 51 Ορισμοί 33 ορισμοί περιστατικού 33 Ορυχεία 54-6 Οστεοπώρωση 74 οστικές μεταβολές 74 Οσφυική ΚΝΜ 6 Ουγκάντα Αποκατάσταση βασιζόμενη στην κοινότητα 106 Κόστος ΚΝΜ 115 Πρότυπα προσβασιμότητας 162 Χρηματοδότηση εκπαίδευσης 187 Ουρηθρικοί καθετήρες 78 Ουρογεννητικό σύστημα 73-4, 87 Ουρολογικές επιπλοκές 26 Ουροποιητικού, καθετήρες 73, 77-8 Ουροποιητικού, λοιμώξεις 73-4
[Π] "παγίδα επιδομάτων" 212 Παγκόσμια αναφορά για την αναπηρία (WHO) 99, 134 παιδιά ως φροντιστές 140 βλ. επίσης παιδική ΚΝΜ Παιδιατρική ΚΝΜ Επίπτωση ΤΚΝΜ 19 Οικογενειακές σχέσεις 140, 213 Υποστηρικτική τεχνολογία 86
Πακέτο συμμετοχής 199 Πακιστάν, διαχείριση εντέρου 78 Πανεπιστημιακή εκπαίδευση 183, 185-6 Παραμεταφορες (Paratransit) 167-8, γλωσσάριο 233 Παραολυμπιακοί αγώνες 6 Παραπληγία 6 Αντίκτυπος υγείας 72 Κίνδυνος θνησιμότητας 25 Κόστος 27 Προβλεπόμενα λειτουργικά απoτελέσματα 80 Παρατηρητήριο 110 παρεμβάσεις στις τάξεις 132 Παροχή υπηρεσιών 103-8, 112, 119 Πάροχοι υπηρεσιών 218 Περιβαλλοντικές τροποποιήσεις 75 Περιβαλλοντικός παράγοντας γλώσσάριο 232 βλέπε ευνοϊκά περιβάλλοντα Περιθώριο υγείας 86, 212-3, 214 Περιορισμοί συμμετοχής 72-3 Υποστηρικτική τεχνολογία 86 περιορισμούς στις δραστηριότητες 73-4 Περιπεϊκοί καθετήρες 78 Περού, ΚΝΜ σχετιζόμενη με λοιμώξεις 23 Πλέγμα του Haddon 48 Πληκτρολογίου, σχεδιασμός 117 Πλήρης βλάβη 6, 72 Πληροφοριών, πρότυπα 32 Πληροφοριών, συστήματα 113, 119 Πνευματικότητα 138 Πνευμονία 25-6, 74 Πνευμονική χωρητικότητα 74 Ποιότητα ζωής 3, 86, 141, 146, 213 Πολιτικές 4, 101, 168-9, 183-4, 213 Πολωνία, δημόσια κτήρια 169 Πόνος 6, 75 Πορτογαλία, συμμετοχή στην εκπαίδευση 186 ποσοστά θνητότητας περιστατικού 15 πρόγραμμα Brukslinjen 167 Πρόγραμμα Lifecycle Housing 165 Πρόληψη ΚΝΜ Αθλητικοί τραυματισμοί 57-60, 214 Αυτοκινητιστικά ατυχήματα 48-50, 213-4 Βία 51-3, 214 Επαγγελματικοί τραυματισμοί 54-6 Μη τραυματική ΚΝΜ 53-4 Προτάσεις 61 Πρωτοβάθμια/ δευτεροβάθμια/ τριτοβάθμια πρόληψη 47 Πτώσεις 51-2 Τραυματική ΚΝΜ 47-53 Τραυματισμοί σχετιζόμενοι με δραστηριότητες αναψυχής 57-60, 214
241
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
Φυσικές καταστροφές 60 Προνοσοκομειακή περίθαλψη 26, 71, 76, 214 Προοδευτική συνειδητοποίηση 159, 169 γλωσσάριο 233 προσβασιμότητα 159, 213, 216, 231 βλ. επίσης περιβάλλοντα με δυνατότητα πρόσβασης γενικά μέτρα 162, 163, 171 υπηρεσίες υγειονομικής περίθαλψης 104,108 Προσδόκιμο επιβίωσης 23, 25-6, 86, 212 Προσέγγιση ασφαλών συστημάτων 48-9, 214-5 Προσθετικός-ορθωτικός 233 Προσωπικοί βοηθοί 137-9, 146 πρότυπα και κανόνες προσβασιμότητας 162 Πρωτοβάθμια περίθαλψη Ανεκπληρωτες ανάγκες 99 Κενά γνώσεων 109, 214 Πρωτοβάθμια πρόληψη 47 Πτήση 160 Πτώσεις 20-1, 211 Πρόληψη 51-2
[Ρ] Ράγκμπι 58-9, 60 Ραντεβού 138 Ρομποτική 116 Ρουάντα, στέγαση 166 Ρουμανία, υπηρεσίες χρηστών αμαξιδίων 114 Ρυθμός θνησιμότητας γλωσσάριο 232
[Σ] Σεισμοί 60 Σεξουαλική δυσλειτουργία 79, 88, 139 Σιέρα Λεόνε, κίνδυνος θνητότητας 3, 27 Σκι 60 Σουηδία Διαφορές φύλλων στην επίπτωση ΤΚΝΜ 19 ΚΝΜ σχετιζόμενη με λοίμωξη 23 Κοινωνικά δίκτυα 140 Κοινωνική στέγαση 166 Πρόγραμμα ατομικής βοήθειας 137 Πρόγραμμα μεταφοράς "Brukslinjen" 167 Συντροφικές σχέσεις 138 Σπαστικότητα 74 Σπονδυλικές ορθώσεις 83 Σρι Λάνκα Αποκατάσταση και προσαρμογή ΚΝΜ 142 Στέγαση 163-4, 172 Στήριξη ομοιπαθών 145 Στάθμιση δεδομένων 33 Σταθμισμένος δείκτης θνητότητας 15, 26 Στάση της ευρύτερης κοινωνίας 132 Στέγαση 160, 163-6, 172
"στέγαση ζωής" 164 Στέγασης, μητρώα 165-6 Στεγασμένα εργαστήρια 193-4 Στητική δυσλειτουργία 79 Στρατηγικές 101 Σύμβαση για τα δικαιώματα των ατόμων με αναπηρία (CRPD) 7,8, 71, 101, 108-9, 131, 159, 181 γλωσσάριο 231 Συμβουλευτική σχέσεων 139 Συμβουλευτική/ στήριξη ομοιοπαθών 82, 108-10, 140, 145, 185, 194 Συμβούλιο Καναδών με αναπηρία 162 Συμμετοχή μετόχων 61, 101, 104 Συμμετοχή στην εκπαίδευση Είδη σχολείων γλωσσάριο 233 Επιστροφή στο σχολείο 181, 182-3, 215 Κοινωνική υποστήριξη 187 Μετάβαση από το σχολείο 185-6 Νομοθεσία και πολιτικές 183-4 Περιβαλλοντικά εμπόδια 186 Στέγαση 186-7 Συστάσεις 199 Τροποποιώντας συμπεριφορές 188-9 Χρηματοδότηση 187 Συμμετοχή στην εργασία 181, 189-198, 213, 215-6 Αυτοαπασχόληση 196-7, 216 Επαγγελματική εκπαίδευση 191-4 Νομοθεσία 195 Περιβαλλοντικοί φραγμοί 190-1, 195 Στέγαση 195-6 Συστάσεις 199 Υπερβαίνοντας προκαταλήψεις 194 Υποστηριζόμενη εργασία 193-4 συμπεριφορές 132-134, 146, 188-9, 213, 217 Συμπτώματα ΚΝΜ 6 Συνεχιζόμενη επαγγελματική εξέλιξη 110 Συννοσηρότητα 75, 82, γλωσσάριο 231 Συντηρητική διαχείριση 76-7 Συντονισμός υπηρεσιών 106 Σύντροφοι 139-40 Συσκευές αυτοβοήθειας 84 Συσκευές για λήψη υγρής, στερεάς τροφής 85 Συσκευές ελέγχου περιβάλλοντος 85 Συσκευές επικοινωνίας 84 Συσκευές καλλωπισμού 85 Συσκευές οικιακών δραστηριοτήτων 85 Συσκευές τουαλέτας 84 Συσκευές υγιεινής 84 σύστημα επιδομάτων 197-8 Συστήματα διαβάθμησης αδειών οδήγησης 51 Συστήματα καθισμάτων 83 Συστήματα σταθερής τροχιάς 167
242
Eυρετήριο
Συστήματα ταχείας μετεπιβίβασης 167-8 Συστήματα τοποθέτησης 83 Σχέδια αποζημίωσης 116 Σχεδιασμός 116 Καθολικός σχεδιασμός 75, 162, 234 Τεχνολογιών υγείας 111-2 σχέδιο "Accessible Christchurch" 171 Σχέσεις 138-41, 213 σχετιζόμενη με αλκοόλ ΚΝΜ 21 Σχετιζόμενη με αναψυχή ΚΝΜ 21-2, 212 Σχετιζόμενη με βία, ΚΝΜ 21-2, 212 Πρόληψη 51-3, 214 Σχετιζόμενη με εργασία, ΚΝΜ 21, 212 Πρόληψη 54, 56, 214
Προνοσοκομειακή περίθαλψη 76 Τραχειοστομία 74 Τριτοβάθμια εκπαίδευση 183, 185-6 Τριτοβάθμια πρόληψη 47
[Υ] Υγείας, πρότυπα δεδομένων 32-3 Υγείας, αντίκτυπο στην,ΚΝΜ 72-6 υγείας, διατήρηση 71, 86-7, 214 υγείας, δομών δεδομένα 30-1 υγείας, επαγγελματίες 217 με αναπηρία 134 στάσεις 133-4 υγείας, συστήματα δεδομένων 113-6, 119 υγείας, συστημάτων ενίσχυση 99, 101-20 ανθρώπινοι πόροι 108-10, 119 έρευνα 116-8, 120 ηγεσία και διοίκηση 101-2, 118-9 παροχή υπηρεσιών 103-108, 113, 119 πληροφοριακά συστήματα 113, 115, 119 πρόκληση στην ΚΝΜ 7 προτάσεις 118-20 τεχνολογίες 111-3, 119 χρηματοδότηση 115, 119-20 υγείας, τομέας ανταπόκριση στην ΚΝΜ 215 Υγειονομικής περίθαλψης, ανάγκες 71, 76-89 Ανεκπλήρωτες ανάγκες 99-100 Αποκατάσταση 71, 77-82, 215 Διατήρηση υγείας 71, 86-7, 214 Κίνδυνος θνησιμότητας 25-6 Οξεία περίθαλψη 71, 76-7, 214-5 Προνοσοκομειακή περίθαλψη 26, 69, 76, 215 Προτάσεις 88-9 Υποξείας φάσης, περίθαλψη 71, 77-82, 215 Φραγμοί στις υπηρεσίες 104 Υπερηβικοί καθετήρες 78 Υπόγειος σιδηρόδρομος 167 Υποξεία ιατρική περίθαλψη 71, 77-8, 215 Υποστηριζόμενη εργασία 193-4 Υποστηρικτική ομαδική θεραπεία 143 υποστηρικτική τεχνολογία ανάγκη για 82 ανεκπλήρωτες ανάγκες 99-101 ανθρώπινοι πόροι 108 αποδοχή 105 αποτελέσματα 86, 118 είδη 83-5 εργασιακός χώρος 195 έρευνα και καινοτομία 116 ζωτικής σημασίας 215 λειτουργικά επίπεδα 81
[Τ] Ταϊλάνδη, δημόσια κτήρια 161 Τανζανία, Ηνωμένη Δημοκρατία 161 Μεταφορές 168 Συμμετοχή στην εκπαίδευση 186 Ταξί 167-8 ταξίδι με αυτοκίνητο 160, 168 Ταξίδι με μοτοσυκλέτα 168 Ταξιδιωτική αλυσίδα 161, γλωσσάριο 234 Τέμνον τραύμα 52-3, 214 Τετραπληγία 6 Αντίκτυπος υγείας 72 Κίνδυνος θνησιμότητας 26 Κόστος 27 Προβλεπόμενα λειτουργικά αποτελέσματα 80-1 Τεχνολογία 75, 111-2, 119 Τεχνολογία υπολογιστών 84, 116 τεχνολογίες υγείας 111-2, 119 Τηλε-αποκατάσταση 106 Τηλε-εργασία 196 Τηλεϊατρική 106 Τομείς 217 Τουρκία Δημόσια κτήρια 161 ΚΝΜ σχετιζόμενη με βία 21 Τραμ 167 Τραυματική ΚΝΜ Αίτια 6 Αιτιολογία 20-1 Δημογραφικές τάσεις 22 Επιπολασμός 16-7, 211-2 Επίπτωση 18-20, 211 Κόστος 27 Οξεία αντιμετώπιση 77-8 Ορισμοί γλωσσάριο 234 Πρόληψη 47-53
243
Διεθνείς προοπτικές για την Κάκωση Νωτιαίου Μυελού
μοντέλα για την παραγωγή και τη διανομή 112 ορισμός 75, 231 παράγοντες κόστους 113, 115 παροχή υπηρεσιών 103,109, 213 προγράμματα δανείου-ενοικίασης 116 σχολεία 186 χώρες μεσαίου εισοδήματος 109 χώρες χαμηλού εισοδήματος 109, 110, 113 Υποστήριξη 110, 13-7, 146-7 Υπόταση 73 υψηλού εισοδήματος χώρες ανεκπλήρωτες ανάγκες υποστηρικτικής τεχνολογίας 100 αυξανόμενος επιπολασμός ΚΝΜ 212 αυτοαπασχόληση 197 δευτερογενής επιπλοκές 25-6 επαγγελματική εκπαίδευση 192-3 κεντρικά μητρώα ΚΝΜ 30 κίνδυνος θνησιμότητας 3,4, 212 κοινοτική φροντίδα 136 κοινωνική προστασία 197 κόστος ΚΝΜ 115-6 νομοθεσία και πολιτικές εκπαίδευσης 183 προσδόκιμο επιβίωσης 25 χρηματοδότηση εκπαίδευσης 187
Φώτα πορείας ημέρας 51
[Χ] Χαμηλού εισοδήματος χώρες Ανεκπλήρωτες ανάγκες υποστηρικτική τεχνολογίας 100 Ανθρώπινοι πόροι 109 Αυτοαπασχόληση 197 Δευτερογενής καταστάσεις 26, 212 Επιπολασμός ΚΝΜ 212 Επίσημη φροντίδα 136 Θέματα εργασίας 190 Κίνδυνος θνησιμότητας 3, 14 Κόστος ΚΝΜ 115 Ομάδες αυτοβοήθειας 144-5 Παροχή αμαξιδίων 104, 111 Στέγαση 160 Συμμετοχή στην εκπαίδευση 182-3, 186, 187 Τραυματισμοί σε ορυχεία 54-6 Υποστηρικτική τεχνολογία 111-2, 213 "χάρτης προσβάσιμης Σόφιας" 169 Χειρουργική αποκατάσταση 77 Χειρουργική επανόρθωση 82 Χρηματοδότηση Αυτοαπασχόληση 196 Εκπαίδευση 187 Ενδυνάμωση συστήματος υγείας 115, 119-20 Προσβάσιμη στέγαση 163-6 χρηματοδότηση και προσιτό κόστος 113-5, 120 χρόνια νοσήματα 86
[Φ] Φαρμακευτική ΚΝΜ 21 Φινλανδία Επιπολασμός ΤΚΝΜ 14-6, 212 Επίπτωση ΤΚΝΜ 17-8 Ιδιωτική μεταφορά 168 Κίνδυνος θνητότητας 26 ΚΝΜ σχετιζόμενη με απόπειρα αυτοκτονίας 21 Φολικού οξέως, συμπληρώματα 54-5, 56, 214, παράρτημα Δ 229-30 φορείς 217 Φρενικοί βηματοδότες 75 φροντίδα ανεπίσημη 134-6 επίσημη 136 Φροντίδα ανάπαυλας 134-5, γλωσσάριο 33 Φροντίδα επιδερμίδος Φροντίδα κατ’ οίκον 136 Φροντίδα στηριζόμενη σε κοινότητα 136 φροντιστές 134-5 βοηθητική τεχνολογία 86 εκπαίδευση και υποστήριξη γιαπαιδιά 110, 135-6, 140 Φυματίωση 23, 53-4, 212, 214 Φυσικές καταστροφές 60, 171 Φυσική δραστηριότητα 145
[Ψ] Ψυχική υγεία 82-3, 141 Ψυχολογικές παρεμβάσεις 143 Ψυχολογικός αντίκτυπος ΚΝΜ 191,210 βλέπε ψυχική υγεία
[Όροι στα Αγγλικά] "Spinal Essentials" 107 Able Disabled All People Together (ADAPT) 188 Asian Spinal Cord Network 144 Back-up Trust 143, 188 bed-blocking 160 Boksmart 59 center for independent living Βραζιλία 162 CREATE 186 Escola Aberta (ανοικτό σχολείο) 186-7 FLIPPER 167 Global Spinal Cord Consumer Network 144 Guttman, Ludwig 6
244
Eυρετήριο
HIV 53 ICF Core Sets for SCI 32 Jobs Accommodation Network 195 Libre Acceso 162 Minibuses 167-8 Motivation Romania Foundation (MRF) 114 Munro, Donald 6 National Resource Center for Inclusion 188 NHV μοντέλο 102 Prefered Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) παράρτημα Α (223) RegioTaxi KAN 167 RugbySmart 58 Snowboarding 60 Spinal Cord Injuries Australia (SCIA) 144 Spinal Injury Trust 143 Stroke Mandeville Hospital 6 System of Health Accounts (SHA) 32
245
Σημειώσεις .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. .................................................................................................................................................................................. ..................................................................................................................................................................................
246
"Η κάκωση του νωτιαίου μυελού δεν πρέπει να αντιμετωπίζεται σαν θανατική ποινή. Αυτό όμως απαιτεί αποτελεσματική επείγουσα αντιμετώπιση και κατάλληλες υπηρεσίες αποκατάστασης, οι οποίες επί του παρόντος δεν είναι διαθέσιμες για τους περισσότερους ανθρώπους στον κόσμο. Από τη στιγμή που θα εξασφαλίσουμε την επιβίωση, τότε το επόμενο βήμα είναι η προώθηση των ανθρωπίνων δικαιωμάτων των ατόμων με κάκωση του νωτιαίου μυελού, όπως και των άλλων ατόμων με αναπηρίες. Όλα αυτά σχετίζονται τόσο με την ενημέρωση, όσο και με τους πόρους. Καλωσορίζω αυτή τη σημαντική αναφορά, διότι θα συμβάλει στην βελτίωση της κατανόησης και επομένως, στην καλύτερη πρακτική". SHUAIB CHALKEN, ΕΙΔΙΚΟΣ ΑΝΤΑΠΟΚΡΙΤΗΣ ΤΟΥ ΟΗΕ ΓΙΑ ΤΗΝ ΑΝΑΠΗΡΙΑ
"Η δισχιδής ράχη δεν είναι εμπόδιο για μια πλήρη και χρήσιμη ζωή. Έχω υπάρξει πρωταθλήτρια Παραολυμπιακών Αγώνων, σύζυγος, μητέρα, ραδιοτηλεοπτική εκφωνήτρια και μέλος της Άνω Βουλής του Βρετανικού Κοινοβουλίου. Χρειάστηκε θάρρος και αφοσίωση, αλλά σίγουρα δεν είμαι υπεράνθρωπος. Όλο αυτό κατέστη δυνατό μόνο γιατί μπορούσα να βασιστώ σε μια καλή υγειονομική περίθαλψη, ολοκληρωμένη εκπαίδευση, κατάλληλα αναπηρικά αμαξίδια, ένα προσβάσιμο περιβάλλον και σε κατάλληλες κοινωνικές παροχές. Ελπίζω ότι οι υπεύθυνοι χάραξης πολιτικής σε όλο το κόσμο θα διαβάσουν αυτήν την αναφορά, θα κατανοήσουν πώς να αντιμετωπίσουμε την πρόκληση της κάκωσης του νωτιαίου μυελού και θα λάβουν τα απαραίτητα μέτρα". TANNI GREY -THOMPSON, ΠΑΡΑΟΛΥΜΠΙΑΚΟΣ ΜΕΤΑΛΙΟΝΙΚΗΣ ΚΑΙ ΜΕΛΟΣ ΤΗΣ ΒΟΥΛΗΣ ΤΩΝ ΛΟΡΔΩΝ ΤΟΥ ΗΝΩΜΕΝΟΥ ΒΑΣΙΛΕΙΟΥ
"Η αναπηρία δεν είναι ανικανότητα, είναι μέρος της θαυμαστής ποικιλομορφίας που μας περιβάλλει. Πρέπει να καταλάβουμε ότι τα άτομα με αναπηρία δεν θέλουν ελεημοσύνη, αλλά ευκαιρίες. Η φιλανθρωπία προϋποθέτει την παρουσία ενός κατώτερου και ενός ανώτερου ο οποίος, "γενναιόδωρα", δίνει ότι δεν χρειάζεται, ενώ η αλληλεγγύη είναι δεδομένη μεταξύ ίσων, με οριζόντιο τρόπο μεταξύ των ανθρώπων που είναι διαφορετικοί, αλλά ίσοι στα δικαιώματα. Πρέπει να εξαλείψουμε τα εμπόδια, να κατασκευάσουμε έναν δρόμο προς την ελευθερία: την ελευθερία του να είσαι διαφορετικός. Αυτή είναι πραγματική ενσωμάτωση". LENÍN MORENO, ΠΡΩΗΝ ΑΝΤΙΠΡΟΕΔΡΟΣ ΤΗΣ ΔΗΜΟΚΡΑΤΙΑΣ ΤΟΥ ΙΣΗΜΕΡΙΝΟΥ
ISBN 978 618 82190 0 7
248
Lesione del Midollo Spinale
Prospettive Internazionali sulla Traduzione italiano a cura dalla SIMFER in collaborazione con la FAIP
Prospettive Internazionali sulla lesione del midollo spinale
Traduzione italiano a cura dalla SIMFER in collaborazione con la FAIP
Pubblicato dall’Organizzazione Mondiale della Sanità nel 2013 con il titolo: International Perspectives on Spinal Cord Injury © World Health Organization 2013 L’Organizzazione Mondiale della Sanità ha accordato i diritti di traduzione e pubblicazione di una edizione in italiano alla Società Italiana di Medicina Fisica e Riabilitativa (SIMFER), che è la sola responsabile della qualità e della fedeltà della versione italiana. In caso di divergenze tra la versione inglese e la versione italiana, la versione originale inglese autentica è quella di riferimento. Prospettive Internazionali sulla Lesione Midollare © Società Italiana di Medicina Fisica e Riabilitativa (SIMFER) 2015 La traduzione in italiano è stata eseguita dalla Società Italiana di Medicina Fisica e Riabilitativa in collaborazione con la Federazione Associazioni Italiane Para-Tetraplegici Coordinatore del lavoro di traduzione David Antonio Fletzer Traduzione italiana di Cristina Parenti Il refe raggio dei vari capitoli tradotti è stato eseguito da: capitolo 1 David Antonio Fletzer capitolo 2 Claudio Pilati capitolo 3 Caterina Pistarini capitolo 4 Maria Vittoria Actis ed Enrico Chesi capitolo 5 Alessandro Giustini capitolo 6 Luciano Bissolotti capitolo 7 Tiziana Radaelli capitolo 8 Mario Lucidi capitolo 9 Luca Salvi
Contenuti Prefazione vii Prefazione, FAIP Prefazione, SIMFER xi xiii
Ringraziamenti xv Collaboratori xvii 1. Cos’è la lesione midollare Obiettivo e scopo di questo rapporto Cos’è la lesione midollare? La dimensione medica La dimensione storica della lesione midollare La lesione midollare come sfida dei sistemi sanitari e delle società Strumenti per la comprensione dell’esperienza della persona con lesione midollare Sommario dell’IP-SCI 2. Il quadro globale della lesione midollare Cosa sappiamo a riguardo della lesione midollare? Prevalenza della lesione midollare Incidenza della lesione midollare Lesione midollare traumatica Lesione midollare non-traumatica Mortalità ed aspettative di vita Costi associati alla lesione midollare Dati e prove sulla lesione midollare Fonti dei dati Standard sull’informazione Problemi e dubbi circa i dati Definizioni e standardizzazione dei dati Dati sottostimati Altri problemi Conclusioni e raccomandazioni 3 4 5 5 5 7 8 8 13 15 15 17 17 22 23 26 29 30 32 33 33 33 33 34
3. Prevenzione della lesione midollare 47 Cause della lesione midollare traumatica 48 Incidenti stradali 48 Cadute 52 Violenza 53 v
Cause della lesione midollare non-traumatica Attività, luoghi e circostanze associate alla lesione midollare Infortuni sul lavoro Infortuni nello sport e nelle attività ricreative Calamità naturali Conclusioni e raccomandazioni
54 57 57 57 62 62
4. Sistema sanitario e bisogni riabilitativi 71 Comprensione dell’impatto della lesione midollare sulla salute 72 Possibili complicanze 73 Bisogni sanitari 76 Soccorso pre-ospedaliero e terapia in fase acuta 76 Assistenza sanitaria in fase post acuta e riabilitazione 77 Ausili 83 Conservazione dello stato di salute 87 Conclusioni e raccomandazioni 89 5. Il rafforzamento dei sistemi sanitari 99 I bisogni non soddisfatti 99 Assistenza sanitaria 99 Riabilitazione 100 Il rinforzo dei sistemi sanitari 101 Guida ed organizzazione 101 Erogazione del servizio 102 Risorse umane 108 Le tecnologie sanitarie 110 Sistemi di informazione sanitaria 112 Finanziamento e accessibilità economica 114 Ricerca 115 Conclusione e raccomandazioni 116 6. Atteggiamenti, relazioni ed adattamento 129 Atteggiamenti 130 Atteggiamenti collettivi 130 Atteggiamenti degli operatori sanitari 131 Assistenza e supporto 132 Assistenza informale 133 Assistenza formale 134 Assistenti personali 135 Relazioni familiari 136 I partner 137 Rapporti con genitori e fratelli 138
vi
Adattamento alla lesione midollare Conclusione e raccomandazioni
139 144
7. Lesione midollare e ambienti accessibili 157 Barriere che incontrano le PLM 157 Alloggi 157 Trasporti 158 Edifici pubblici 159 Affrontando le barriere 159 Misure trasversali 160 Alloggio 161 Trasporti 164 Edifici pubblici 166 Conclusioni e raccomandazioni 168 8. Istruzione e lavoro Lesione al midollo spinale e partecipazione all’istruzione Affrontare le barriere all’istruzione Legislazione e politica Supporto ai bambini con spina bifida Ritornare a scuola dopo la lesione La transizione scolastica Ridurre le barriere fisiche Accomodamenti ragionevoli Finanziare l’istruzione e gli adattamenti Supporto sociale Affrontare le barriere attitudinali Lesione al midollo spinale e partecipazione al lavoro Affrontare le barriere all’occupazione La formazione professionale e l’occupazione assistita Il superamento dei pregiudizi riguardanti la lesione midollare Assicurare l’adattamento del posto di lavoro Lavoro autonomo Tutela sociale Conclusioni e suggerimenti 9. La strada da percorrere: raccomandazioni Risultati principali 1. La lesione midollare è un problema rilevante per la sanità pubblica 2. Le ripercussioni personali e sociali della lesione midollare sono notevoli 3. Le barriere ai servizi ed agli ambienti limitano la partecipazione e compromettono la qualità della vita 4. La lesione al midollo spinale è prevenibile 179 180 181 181 182 182 183 184 185 185 186 186 188 189 190 192 194 195 196 197 209 209 209 211 211 212 vii
5. Si può sopravvivere in seguito alla lesione midollare 212 6. La lesione midollare non deve precludere la buona salute e l’inclusione sociale 213 Raccomandazioni 214 1. Migliorare l’intervento del settore sanitario alla lesione midollare 214 2. Dare forza alle PLM e alle loro famiglie 214 3. Sfidare gli atteggiamenti negativi verso le PLM 214 4. Assicurare che gli edifici, i mezzi di trasporto e l’informazione siano accessibili 214 5. Sostegno al lavoro ed al lavoro autonomo 214 6. Promuovere la ricerca e la raccolta dei dati appropriata 215 Passi successivi 215 Conclusioni 217 Appendice tecnica A Appendice tecnica B Appendice tecnica C Appendice tecnica D 219 223 225 227
Glossario 229 Indice 233
viii
Prefazione
Il simbolo internazionale per la disabilità è la carrozzina e lo stereotipo di una persona con disabilità è il giovane uomo paraplegico. Queste rappresentazioni ci suonano molto familiari, ma allo stesso tempo sappiamo che questo non è un quadro preciso per descrivere la varietà della disabilità globale. Mentre le persone con disabilità rappresentano circa il 15% della popolazione, meno del 0,1% della popolazione ha lesioni al midollo spinale (SCI/LM). Tuttavia la lesione midollare è particolarmente devastante per due ragioni. La prima è che spesso colpisce di punto in bianco. Un automobilista stanco e sbronzo a notte fonda devia fuori strada e finisce in un cappottamento con conseguente tetraplegia. Un adolescente si tuffa nella piscina e si rompe il collo. Un operaio cade dai ponteggi e diventa paraplegico. Accade un terremoto e la schiena di una persona viene lesa dai muri cadenti. Una donna di mezza età rimane paralizzata a causa della pressione esercitata da un tumore. In tutti questi esempi, qualcuno nel fiore dei suoi anni diventa una persona con disabilità in un istante. Nessuno di noi è immune da questo rischio. La seconda ragione sta nel fatto che la LM spesso porta alla morte prematura o nel migliore delle ipotesi all’esclusione sociale. Spesso i centri di assistenza al trauma sono inadeguati. Molte persone non hanno accesso a cure riabilitative di alto livello o a strumentazioni di supporto. L’assistenza sanitaria dei nostri tempi è carente e questo significa che una persona con la lesione midollare probabilmente morirà dopo pochi anni a causa di infezioni del tratto urinario o piaghe da decubito. Anche quando gli individui sono fortunati abbastanza da ricevere l’assistenza sanitaria e la riabilitazione di cui hanno bisogno, è probabile che gli venga rinnegato l’accesso all’istruzione ed al lavoro che potrebbe permettergli di riconquistare la loro indipendenza e contribuire alle loro famiglie e alla società. Nessuno di questi esiti devastanti è inevitabile. Il messaggio di questo rapporto è che è possibile prevenire la LM, che si può sopravvivere alla lesione al midollo spinale la quale non deve precludere una buona qualità di vita né il pieno contributo alla società. Questo rapporto contiene le migliori prove scientifiche disponibili riguardanti le strategie per ridurre l’incidenza della lesione midollare, soprattutto da cause traumatiche. Esso tratta inoltre come il sistema sanitario può reagire efficacemente alle persone lese. Infine, il rapporto affronta il tema di come agevolare l’adattamento personale e le relazioni, come le barriere ambientali
ix
Prospettive Internazionali sulla lesione del midollo spinale
possano essere rimosse e come gli individui con LM possano accedere alle scuole, alle università ed ai luoghi di lavoro. Possiamo trasformare la lesione al midollo spinale da minaccia in opportunità. Questo concetto ha due dimensioni: primo, la lesione midollare sfida ogni aspetto del sistema sanitario per cui abilitare i sistemi sanitari a rispondere efficacemente alle sfide della LM significa reagire meglio ad altri tipi di malattie ed infortuni. Secondo, un mondo ospitale verso persone con lesione midollare in particolare, sarà inevitabilmente più accogliente alla disabilità nel suo complesso. Migliorando l’accessibilità e la maggiore disponibilità di ausili assistivi si aiuterebbero milioni di persone con disabilità ed anziani nel mondo. Infine, ovviamente, la parola “opportunità” indica vite migliori ed un contributo produttivo a cui giustamente aspirano le persone con lesioni al midollo spinale, e che noi potremmo aiutare se solo avessimo la volontà politica e l’impegno organizzativo. Come nel precedente “Rapporto Mondiale sulla Disabilità” ed ora con “Prospettive Internazionali sulla Lesione midollare”, questo rapporto ha il potenziale di cambiare le vite ed aprire opportunità. Esorto quindi i politici nel mondo a prestare attenzione alle conclusioni del rapporto. Dott.ssa Margaret Chan Direttrice Generale
x
Prefazione, FAIP
Il presente lavoro al di là dell’intrinseca valenza conoscitiva e dell’indiscutibile rilievo scientifico, rappresenta una formidabile esperienza di condivisione dei saperi che riguardano le persone che vivono una condizione di disabilità derivante da una lesione del midollo spinale. Basti pensare che per la realizzazione dello studio, l’Organizzazione Mondiale della Sanità (OMS) e l’International Spinal Cord Society (ISCOS) si sono avvalsi di oltre 200 collaboratori provenienti da 30 paesi oltre che di consulenti professionali che in diversa misura hanno consentito la realizzazione di tale documento. La “prospettiva internazionale” attraverso cui è spiegata e rappresentata la condizione di disabilità derivante da un danno al midollo spinale ci ha offerto una visione del fenomeno declinata sui differenti contesti sociali, economici e culturali che testimonia di una vasta variabilità delle condizioni di vita delle persone con para o tetraplegia nel mondo. Se è vero che, soprattutto nei paesi sviluppati, sono stati registrati progressi in materia di inclusione sociale, cura e presa in carico delle persone con disabilità, i dati transnazionali emersi dal rapporto dimostrano come la gran parte delle persone con lesione del midollo spinale nel mondo viva ancora in condizioni di emarginazione sociale e sia esposta ad un rischio di mortalità molte volte superiore rispetto alla popolazione complessiva. Tale constatazione, coerentemente con quanto già affermato dalla Classificazione Internazionale del Funzionamento della Disabilità e della Salute (ICF) da parte della comunità scientifica internazionale, e ribadito con l’adozione nella Convenzione ONU sui Diritti delle persone con disabilità, ci insegna come la disabilità non sia tanto data dalla valutazione/misurazione del danno funzionale in sé, quanto dalle condizioni fisiche, socioculturali e psicologiche in cui una persona si trova a vivere in un determinato luogo e momento storico. Ne consegue quindi che il raggiungimento di una apprezzabile qualità di vita per le persone con disabilità e, nella fattispecie, con lesione del midollo spinale, dipenda dalla capacità del sistema socio-economico e sanitario di rispondere in modo appropriato ai diritti-bisogni delle persone con disabilità L’auspicio quindi è che le istituzioni governative, a tutti livelli, sappiano accogliere positivamente le indicazioni metodologiche e sostanziali contenute nel documento e sappiano promuovere politiche attive per l’inclusione sociale delle persone con disabilità. Dall’altra parte, è necessario che anche tutti gli altri soggetti xi
Prospettive Internazionali sulla lesione del midollo spinale
coinvolti nei percorsi abilitativi, a partire dagli stessi movimenti associativi delle persone con disabilità, sappiano mettere in campo competenze e strategie e azioni per l’affermazione dei diritti e l’implementazione di buone prassi. Vincenzo Falabella Presidente Federazione Associazioni Italiane Paratetraplegici – FAIP
xii
Prefazione, SIMFER
Questo rapporto “Prospettive Internazionali sulle Lesioni del Midollo Spinale” si apre definendo la lesione midollare come “una complessa condizione di salute e di vita”. Solo nelle pagine successive il problema della lesione midollare viene affrontato nei suoi aspetti biologici e biomedici. Questo può sembrare irrilevante, ma bisogna pensare che, fino a non molti anni fa, in ambito sanitario era decisamente inusuale descrivere un problema di salute parlando in primis di “condizione” e non di malattia, di “persona” e non di paziente. La crescente consapevolezza dell’importanza dei fattori psicosociali nel determinare fenomeni di salute e malattia è all’origine di un sensibile mutamento di prospettiva anche nei settori del mondo sanitario che sono più tradizionalmente vincolati ai modelli biomedici. Tale mutamento è attribuibile a diversi fattori: i destinatari dell’assistenza (pazienti e famigliari) hanno sempre maggiori informazioni, conoscenze, consapevolezza e volontà di essere coinvolti nelle scelte riguardanti la loro salute; gli attuali modelli concettuali di riferimento sulle conseguenze delle malattie, come quello su cui su basa la Classificazione Internazionale del Funzionamento, della Disabilità e della Salute (ICF), pongono sempre maggiore enfasi sui determinanti ambientali e personali della salute; la crescente prevalenza delle patologie croniche impone di rivedere molti tradizionali paradigmi di cura basati sul trattamento di condizioni acute. L’ambito delle malattie disabilitanti – di cui la lesione del midollo spinale rappresenta una sorta di paradigma nell’immaginario collettivo – è certamente uno dei settori in cui questa evoluzione verso una prospettiva multidimensionale di tipo bio-psico-sociale è stata più precoce e più sistematica, e in cui i temi della cura e dell’assistenza – sanitaria e sociale – si collegano più strettamente a quello della tutela di tutti gli altri diritti fondamentali, come ci ricorda la Convenzione ONU sui Diritti delle Persone con Disabilità. Sia le persone con disabilità che i professionisti chiamati a dar loro aiuto possono verificare quotidianamente quanto la qualità e i risultati dell’assistenza dipendano dall’interazione fra diversi fattori: medici, sociali, culturali ed economici; gli stessi fattori che sono puntualmente analizzati nei vari capitoli di questo rapporto. Si tratta di un documento che, al di là della rilevanza specifica per il miglioramento degli interventi per le persone con lesione midollare, rappresenta un modello e una fonte preziosa di indicazioni per molte altre condizioni disabilitanti. xiii
Prospettive Internazionali sulla lesione del midollo spinale
È per questo che accogliamo con soddisfazione l’uscita della traduzione italiana del rapporto, frutto della sinergia fra la Società Italiana di Medicina Fisica e Riabilitativa, la SIMFER, e della Federazione FAIP, che rappresenta nel nostro paese le istanze delle persone con una lesione del midollo spinale. Sebbene molto sia stato fatto nel nostro paese, e non siano mancati i momenti di proficua sinergia fra i diversi soggetti coinvolti in queste tematiche, c’è ancora strada da percorrere nella direzione di una effettiva equità di accesso e di piena fruizione dei servizi che la comunità dovrebbe mettere a disposizione a queste Persone. Questo senza dimenticare quanto grandi e dolorose siano, su scala planetaria, le carenze e le ineguaglianze nell’assistenza e nel godimento dei diritti fondamentali da parte delle persone con disabilità; ineguaglianze di cui il rapporto ci offre esempi eloquenti. Il rapporto delinea un ambito di riflessione e di intervento in cui possono proficuamente interagire tutti i diversi soggetti coinvolti nella problematica della lesione midollare: persone con disabilità e familiari, professionisti, programmatori sociosanitari, esponenti del mondo della scuola e del lavoro, legislatori e decisori. Da ultimo, un doveroso e sentito ringraziamento ai colleghi della SIMFER, in particolare a David Fletzer, e a tutti coloro che hanno contribuito al lavoro di traduzione e di edizione; sono certo che la loro fatica sarà ricompensata dall’apprezzamento di chiunque abbia a cuore la tutela dei diritti delle persone con una disabilità. Paolo Boldrini Presidente Società Italiana di Medicina Fisica e Riabilitativa (SIMFER)
xiv
Ringraziamenti
L’Organizzazione Mondiale della Sanità (OMS) e l’ International Spinal Cord Society (ISCoS) vorrebbero ringraziare oltre 200 collaboratori (redattori, partecipanti della consulta regionale e revisori) di questo rapporto provenienti da 30 paesi nel mondo. Inoltre si ringrazia debitamente i relatori del rapporto, il personale presso OMS, ISCoS e Swiss Paraplegic Research (SPF) per aver offerto la loro guida ed il loro supporto. Senza la loro dedizione e competenza non sarebbe stato possibile scrivere questo rapporto. Molte altre persone hanno contribuito a migliorare il rapporto: in particolare David Bramley e Philip Jenkins, che hanno redatto il testo finale del rapporto principale, ed Angela Burton sviluppatrice del testo alternativo per i non vedenti che utilizzano lo screen reader, in modo da rendere accessibili anche i contenuti delle figure e delle immagini. Si deve inoltre ringraziare: Natalie Jessup, Sue Lukersmith e Margie Peden per il supporto tecnico nell’elaborazione del rapporto. Per quanto riguarda l’analisi e l’interpretazione dei dati si deve ringraziare Martin Brinkhof, Somnath Chatterji e Colin Mathers. Per le traduzioni degli studi fatti in lingua non inglese si ringrazia Nicole Andres, Carolina Ballert, Pavel Ptyushkin e Hua Cong Wen. Il rapporto ha tratto beneficio anche dal lavoro di James Rainbird per la correzione delle bozze, Christine Boylan per l’indicizzazione, Susan Hobbs e Adele Jackson per la progettazione grafica. Infine, grazie a Rachel McLeod-Mackenzie insieme a Melanie Lauckner per il loro supporto amministrativo e per la produzione del rapporto in formati accessibili. OMS e ISCoS vogliono soprattutto ringraziare SPF per il loro supporto nella coordinazione dell’elaborazione del Rapporto e la Swiss Paraplegics Association (SPV), SPF e Swiss Paraplegic Foundation (SPS) per il loro supporto economico per lo sviluppo, traduzione e pubblicazione del rapporto.
Copertina a cura di Brian Kellett
Nel 2003, Brian Kellett in seguito ad un incidente con la mountain bike divenne completamente paraplegico (T4). Attraverso l’arte è riuscito ad accettare ed adattarsi alla sua lesione. Come professore associato presso l’università che lui stesso frequentò e con le sue opere d’arte, riconosce che la sua disabilità gli conferisce una storia unica su cui riflettere e condividere con gli altri. Lavora come libero professionista nel settore della fotografia e nella progettazione grafica ed inoltre sta continuando i suoi studi presso la Ohio State University per il Dottorato in Educazione Artistica. Il suo obiettivo è quello di sviluppare una organizzazione no-profit, lavorando con veterani disabili ed insegnandogli la fotografia terapeutica. xv
Collaboratori
Comitato Editoriale Jerome Bickenbach, Cathy Bodine, Douglas Brown, Anthony Burns, Robert Campbell, Diana Cardenas, Susan Charlifue, Yuying Chen, David Gray, Leonard Li, Alana Officer, Marcel Post, Tom Shakespeare, Anne Sinnott, Per von Groote, Xianghu Xiong.
Redazione Esecutiva Jerome Bickenbach, Alana Officer, Tom Shakespeare, Per von Groote.
Redazione Tecnica David Bramley, Philip Jenkins.
Comitato Relatori Frank Abel, Michael Baumberger, Pietro Barbieri, Fin Biering-Sørensen, Anne Carswell, Fred Cowell, Joel DeLisa, Wagih El Masri(y), Stella Engel, Edelle FieldFote, Jan Geertzen, Anne Hawker, Joan Headley, Jane Horsewell, Daniel Joggi, Apichana Kovindha, Etienne Krug, Gerold Stucki, Maluta Tshivhase, Isabelle Urseau, Jean-Jacques Wyndaele.
Collaboratori ai singoli capitoli Capitolo 1: Cosa è la lesione midollare Collaboratori: Jerome Bickenbach, Fin Biering-Sørensen, Joanna Knott, Tom Shakespeare, Gerold Stucki, George Tharion, Joy Wee. Riquadro: Jerome Bickenbach (1.1).
Capitolo 2: Il quadro globale della lesione midollare
Collaboratori: Jerome Bickenbach, Inga Boldt, Martin Brinkhof, Jonviea Chamberlain, Raymond Cripps, Michael Fitzharris, Bonne Lee, Ruth Marshall, Sonja Meier, Michal Neukamp, Peter New, Richard Nicol, Alana Officer, Brittany Perez, Per von Groote, Peter Wing. Riquadri: Martin Brinkhof, Jonviea Chamberlain, Sonja Meier (2.1), Jerome Bickenbach (2.2), Per von Groote (2.3). xvii
Prospettive Internazionali sulla lesione del midollo spinale
Capitolo 3: Prevenzione della lesione midollare
Collaboratori: Douglas Brown, Robert Campbell, George Coetzee, Michael Fitzharris, Fazlul Hoque, Shinsuke Katoh, Olive Kobusingye, Jianan Li, Ruth Marshall, Chris Mikton, Peter New, Alana Officer, Avi Ohry, Ari Seirlis, Per von Groote, Dajue Wang, Eric Weerts, Joy Wee, Gabi Zeilig. Riquadri: Michael Fitzharris (3.1), Fazlul Hoque (3.2), Martin Brinkhof, Jonviea Chamberlain, Sonja Meier (3.3), George Coetzee, Alana Officer (3.4), Richard Nicol (3.5), Balraj Singhal, Rick Acland, David Walton, Wayne Viljoen, Clint Readhead (3.6).
Capitolo 4: Sistema sanitario e bisogni riabilitativi
Collaboratori: Cathy Bodine, Brian Burne, Anthony Burns, Diana Cardenas, Catharine Craven, Lisa Harvey, Graham Inglis, Mark Jensen, Natalie Jessup, Paul Kennedy, Andrei Krassioukov, Richard Levi, Jianjun Li, Sue Lukersmith, Ruth Marshall, James Middleton, Carrie Morris, Peter New, Alana Officer, Govert Snoek, Xianghu Xiong. Riquadro: Natalie Jessup (4.1).
Capitolo 5: Il rafforzamento dei sistemi sanitari
Collaboratori: Cathy Bodine, Yuying Chen, Harvinder Chhabra, William Donovan, Julia D’Andrea Greve, Natalie Jessup, Carlotte Kiekens, Suzy Kim, Jiri Kriz, Jianan Li, Leonard Li, Sue Lukersmith, Ruth Marshall, Alana Officer, Sheila Purves, Haiyan Qu, Lawrence Vogel, Per von Groote, William Waring, Jacqueline Webel, Eric Weerts. Riquadri: James Gosney, Xia Zhang (5.1), Ruth Marshall (5.2), Anca Beudean (5.3), James Guest (5.4).
Capitolo 6: Atteggiamenti, relazioni e adattamento
Collaboratori: Caroline Anderson, Susan Charlifue, Jessica Dashner, Stanley Ducharme, Martin Forchheimer, David Gray, Richard Holmes, Jane Horsewell, Margareta Kreuter, Mary-Jane Mulcahey, Richard Nicol, Joanne Nunnerley, Marcel Post, Shivjeet Raghaw, Tom Shakespeare, Cyril Siriwardane, Tomasz Tasiemski, Lawrence Vogel. Riquadri: Carwyn Hill (6.1), Jane Horsewell, Per von Groote (6.2), Cyril Siriwardane (6.3).
Capitolo 7: Lesione midollare e ambienti accessibili
Collaboratori: Jerome Bickenbach, Meghan Gottlieb, David Gray, Sue Lukersmith, Jan Reinhardt, Tom Shakespeare, Anne Sinnott, Susan Stark, Per von Groote. Riquadri: Samantha Whybrow (7.1), Jerome Bickenbach (7.2).
Capitolo 8: Istruzione e lavoro
Collaboratori: Caroline Anderson, Elena Ballantyne, Jerome Bickenbach, Kathryn Boschen, Normand Boucher, David Gray, Erin Kelly, Sara Klaas, Lindsey Miller, Kerri Morgan, Carrie Morris, Marcel Post, Tom Shakespeare, Lawrence Vogel, Per von Groote, Kathy Zebracki. Riquadri: Jerome Bickenbach (8.1), Marcel Post (8.2), Jerome Bickenbach (8.3).
Capitolo 9: La strada da percorrere: raccomandazioni
Collaboratori: Alana Officer, Tom Shakespeare, Per von Groote. xviii
Collaboratori
Appendici Tecniche
Collaboratori: Inga Boldt, Martin Brinkhof, Jonviea Chamberlain, Sonja Meier, Michal Neukamp, Per von Groote.
Collaboratori narrativi
Questo rapporto contiene storie personali attribuibili all’esperienza delle persone con disabilità. Vorremmo ringraziare Mónica Agotegaray, David Gray, Julia D’Andrea Greve, Maher Saad Al Jadid, Norah Keitany, Apichana Kovindha, Sue Lukersmith, Ruth Marshall, Alexandra Rauch, Carolina Schiappacasse, Anne Sinnott, Kelly Tikao, Xia Zhang per la loro assistenza nell’ingaggiare i collaboratori narrativi. Molte persone ci hanno fornito la loro storia ma non tutte sono potute essere inserite nel rapporto. Per motivi di confidenzialità è stato inserito solo il nome ed il paese di provenienza di ogni narratore.
Revisori Fin Biering-Sørensen, Johan Borg, Martin Brinkhof, Douglas Brown, Thomas Bryce, Paola Bucciarelli, Marcel Dijkers, Pat Dorsett, Inge Eriks-Hoogland, Reuben Escorpizo, Szilvia Geyh, Ellen Hagen, Claes Hultling, Rebecca Ivers, Desleigh de Jonge, Chapal Khasnabis, Ingeborg Lidal, Anna Lindström, Rod McClure, Stephen Muldoon, Rachel Müller, Claudio Peter, Ranjeet Singh, Alexandra Rauch, Jan Reinhardt, Marcalee Sipski Alexander, John Stone, Thomas Stripling, Denise Tate, Armando Vasquez, Eric Weerts, Gale Whiteneck.
Collaboratori Aggiuntivi Partecipanti della consulta regionale Sergio Aito, Fin Biering-Sørensen, Susan Charlifue, Yuying Chen, Harvinder Chhabra, Wagih ElMasri(y), Stella Engel, Michael Fitzharris, Harish Goyal, Sonja de Groot, Lisa Harvey, Nazirah Hasnan, Jane Horsewell, Jianan Li, Sue Lukersmith, Ketna Mehta, Stephen Muldoon, Joanne Nunnerley, Marcel Post, Shivjeet Raghaw, Cyril Siriwardane, Tomasz Tasiemski, Esha Thapa, Sara Varughese, Dajue Wang, Eric Weerts, Lucas van der Woude. Nessuno fra gli esperti coinvolti nell’elaborazione di questo rapporto, ha dichiarato alcun conflitto di interessi.
xix
Capitolo 1 Cos’è la lesione midollare
“Prima della lesione midollare, ero una persona molto indipendente, con una vita sociale molto intensa con molti amici, lavoravo molto, viaggiavo parecchio e stavo terminando i miei studi in legge, avevo incontri romantici... la mia vita era identica a quella di qualsiasi altra giovane donna, con tanta voglia di vivere. Dopo la lesione, tutto cambiò e molti dei miei sogni sono stati interrotti – quello di andare a vivere da sola, di finire l’università, di avere una famiglia.” (Claudia, Brasile) “Mentre mio padre andava sul suo motoveicolo e mia madre, seduta a fianco, mi teneva in braccio, un’automobile ci investì. I miei genitori furono uccisi. Io sopravvissi ma diventai paraplegica all’età di 2 anni. Mio nonno, che viveva in una baraccopoli di Bangkok, si prese cura di me. In seguito, fui mandata ad una scuola per bambini disabili. Ora ho 11 anni ed ho lasciato la scuola. Il mio cervello non è buono. Non ho buona memoria ma riesco a manovrare la carrozzina senza difficoltà. Fortunatamente il Signor B, un uomo d’affari tetraplegico, e sua moglie mi hanno conosciuta e hanno deciso di prendersi cura di me. Ora vivo con loro. Mi hanno dato una carrozzina sportiva e pensano di farmi diventare un’atleta in carrozzina nel futuro, e credo di poterci riuscire.” (Anonimo, Thailandia) “Quando sono rientrato dalla riabilitazione, sono stato accolto all’aeroporto dalla comunità e sono entrato in una nuova fase della mia vita in carrozzina. Pensavo di non riuscire a vivere la mia vita come prima. Mi vergognavo e non volevo vedere i miei amici – ora ero diverso – ero cambiato. Non potevo giocare a pallone, né correre, né andare in campeggio o in bicicletta al fiume del luogo in cui vivo. L’unica cosa che volevo fare era stare a casa e nascondermi. Il mio primo team di Terapia Occupazionale ha impiegato circa sei mesi per convincermi ad uscire di casa. Prima di ritornare nella società, il team aveva già fatto costruire rampe nella scuola e aveva reso i bagni accessibili per me. Molto lentamente ho ripreso la mia sicurezza. La pallacanestro era il mio passatempo preferito prima dell’incidente, e mentre ero in riabilitazione ho imparato a giocare a pallacanestro in carrozzina. Ho insegnato ad alcuni amici come fare qualche tiro dalla sedia. Gli insegnanti hanno iniziato ad incoraggiare la partecipazione a scuola e nella comunità sociale, andando in gite locali, visitando vari luoghi e imparando a riconoscere varie piante, nonché andando a Cairns per una gita scolastica. Il sostegno degli insegnanti, amici e famiglia è stato incoraggiante”. (Alfred, Australia)
1
Cos’è la lesione midollare La lesione midollare (LM) – in inglese Spinal Cord Injury – SCI – è una complessa condizione medica e di vita. Storicamente, veniva associata con alti tassi di mortalità. Oggi, però, nei paesi ad alto reddito, la LM è vista non più come la fine di una vita utile o produttiva ma più come una sfida personale e sociale che si può vincere. Questo cambiamento riflette il miglioramento della medicina, per cui le persone riescono a sopravvivere, vivere e prosperare dopo l’infortunio. Per esempio, le persone che sviluppano LM possono adesso beneficiare del miglioramento dell’intervento sanitario nella fase del pronto soccorso, di interventi sanitari e riabilitativi efficaci e di tecnologie come espiratori e carrozzine adeguate, insieme a servizi sociali più diffusi e ad ambienti più accessibili. Come risultato si possono avere più vite salvate ma anche un recupero migliore delle varie funzioni con un aumento di ripristino delle stesse. Ora molte persone con lesione midollare (PLM) possono aspettarsi non solo di vivere una vita più lunga, ma anche una vita più piena e più produttiva, rispetto a ciò che avrebbero avuto negli anni passati. Nei paesi a basso reddito la situazione è molto diversa. La LM da trauma spesso rimane una condizione terminale. La maggior parte delle PLM in paesi come Sierra Leone muoiono in pochi anni dopo l’infortunio (1). In paesi a basso reddito, ed in molti a reddito medio, la disponibilità di tecnologie assistive di qualità come le carrozzine è molto limitata; i servizi sanitari e riabilitativi sono minimi e le possibilità di partecipare alle varie situazioni di vita personale e sociale è limitata (2). La situazione odierna in molti paesi in via di sviluppo è paragonabile a quella dell’Europa e del Nord America negli anni quaranta del secolo scorso (3). La povertà rende la vita ancora più difficile per le PLM (4). Eppure il fatto che nei paesi ad alto reddito sia stato raggiunto un notevole progresso nella sopravvivenza e nella partecipazione in un periodo temporale relativamente breve dovrebbe indurre ad essere ottimisti nelle altre parti del mondo. Con i giusti accorgimenti politici, dovrebbe essere possibile vivere con LM, prosperare e partecipare ovunque nel mondo. Ma nessuno vive in una situazione di isolamento ed è essenziale per noi comprendere come le PLM vivono giorno per giorno nel loro ambiente fisico, sociale ed attitudinale. La qualità della vita con LM dipende, per la maggior parte, dalla presenza o assenza delle facilitazioni ambientali – dalla disponibilità delle risorse e dei servizi adatti, dalla presenza di relazioni di sostegno e di 3
Prospettive Internazionali sulla lesione del midollo spinale
comunità inclusive – o se invece il loro ambiente agisce come barriera ovvero quando le persone devono confrontarsi con atteggiamenti discriminatori ed altri ostacoli, fra cui la mancata fornitura di servizi, di facilitatori e di ausili idonei. Gli effetti globali della LM sull’individuo, ed anche sulla società nel suo complesso, dipendono quindi da una vasta gamma di fattori, tra cui: ■ l’età in cui avviene l’infortunio (se presto o tardi nella vita produttiva di una persona); ■ il livello ed il grado della lesione; ■ la disponibilità e la tempistica delle risorse e dei servizi; ■ l’ambiente in cui la persona vive – fisico, sociale, economico ed attitudinale. Le riforme politiche che assicurano un intervento medico pronto ed efficace insieme alla riabilitazione sostenuta nel percorso verso il pieno reinserimento nella vita comunitaria, sono economicamente vantaggiose e socialmente benefiche. Il costo del soccorso immediato e di cure mediche viene compensato dal fatto che questa assistenza salva direttamente la vita. Visto che la LM colpisce sproporzionatamente le persone giovani con molti anni di vita produttiva, il mancato stanziamento di risorse per la loro riabilitazione risulta un rilevante spreco sociale che può essere evitato attraverso provvedimenti che sono economicamente vantaggiosi. I costi per l’intervento medico e riabilitativo per la LM sono soldi ben spesi. Soprattutto, salvare vite, migliorare la qualità della vita e sostenere la produttività sono imperativi sociali ed umanitari. Le raccomandazioni di questo rapporto evidenziano i cambiamenti nelle politiche e nelle prassi che, come dimostrato, possono apportare grandi miglioramenti nella salute e nella qualità della vita delle PLM. Gli interventi per migliorare le vite delle PLM devono essere accompagnati da misure di prevenzione della lesione midollare. Questo rapporto rivela che molte delle cause ad elevata prevalenza di LM da trauma – incidenti stradali, cadute, infortuni sportivi e ricreativi e la 4
violenza – possono essere comprese, anticipate ed in larga misura, prevenute.
Obiettivo e scopo di questo rapporto L’obiettivo dell’ International Perspectives on Spinal Cord Injury [Prospettive Internazionali sulla Lesione Midollare] è di: ■ raggruppare e sintetizzare informazioni sulla LM, in particolare epidemiologiche, sui servizi, sugli interventi e sulle politiche rilevanti, insieme alle esperienze vissute da persone con lesione midollare nel corso della loro vita in tutto il mondo; ■ dare raccomandazioni per azioni basate su queste informazioni che sono in linea con le aspirazioni di inclusione e partecipazione come espresse nella Convention on the Rights of Persons with Disabilities (CRPD) [Convenzione sui Diritti delle Persone con Disabilità] delle Nazioni Unite (5). Questo rapporto attesta l’ampiezza ed il trend delle LM, esplora le strategie per la prevenzione, analizza le situazioni delle persone con LM in tutto il mondo, e fornisce vari esempi di soluzioni, basate su vari setting economici che possono migliorare l’esperienza vissuta della LM. Queste soluzioni spaziano da servizi sanitari inclusivi e riabilitativi fino al miglioramento dell’accessibilità all’educazione e all’occupazione, rafforzando il sostegno per la vita familiare e sociale. Questo primo capitolo offre un orientamento generale sulle lesioni midollari e contiene una breve sintesi della dimensione medica della LM per chi non è specialista e della storia della LM. Include anche una riflessione di come la LM ed i sistemi e servizi necessari a migliorare l’esperienza vissuta della PLM, possono perfezionare la valutazione complessiva dell’adeguatezza della risposta sociale ai bisogni delle persone affette da patologie disabilitanti.
Capitolo 1 Cos’è la lesione midollare
Cos’è la lesione midollare? La dimensione medica E’ importante comprendere i fondamenti dell’anatomia e della fisiologia, anche se l’esperienza vissuta con la LM varia molto a seconda dei fattori ambientali. Il midollo spinale è situato all’interno della colonna vertebrale (vedi Figura 1.1); si estende dal cervello fino al livello vertebrale L1-L2, terminando nel cono midullare. Alla fine del midollo spinale, nel canale vertebrale, si trova la cauda equina. Il midollo spinale stesso ha livelli neurologici segmentati che corrispondono alle radici dei nervi che fuoriescono dalla colonna vertebrale in corrispondenza degli spazi fra le vertebre. Ci sono 31 paia di radici nervose: 8 cervicali, 12 toraciche, 5 lombari, 5 sacrali ed 1 coccigea. A causa delle differenze in lunghezza fra la colonna vertebrale ed il midollo spinale, i livelli neurologici non corrispondono necessariamente ai segmenti vertebrali. Pur se vi è un dibattito riguardo a cosa sia classificabile come “lesione midollare”, in questo rapporto sono considerate tutte le lesioni al midollo spinale, al cono midollare ed alla cauda equina. Le lesioni midollari possono essere traumatiche o non traumatiche. La LM da trauma può risultare da molte cause diverse – tra cui cadute, incidenti stradali, infortuni sul lavoro e nello sport, atti di violenza. La LM non traumatica, d’altra parte, solitamente risulta da altre patologie – come malattie infettive, tumori, malattie muscolo-scheletriche come l’osteoartrite, e problemi congeniti come la spina bifida, che consiste in un difetto del tubo neurale in corrispondenza dello sviluppo embrionale. I sintomi della lesione al midollo spinale dipendono dalla estensione della lesione traumatica o dalla causa non traumatica, e possono includere la perdita sensoriale o motoria degli arti inferiori, del tronco e degli arti superiori, nonché la perdita delle regolazioni autonome (involontarie) del corpo. Questo può dare alterazioni della
respirazione, della frequenza cardiaca, della pressione sanguigna, del controllo della temperatura, del controllo intestinale e vescicale, e della funzione sessuale. In generale, più la lesione si trova in alto nel midollo spinale e più sarà ampia la menomazione. La LM cervicale causa solitamente la perdita sensoriale e motoria (paralisi) nelle braccia, corpo e gambe, denominata tetraplegia (il termine alternativo quadriplegia è ora in disuso). Una persona con lesioni C4 o più alte puòe avere bisogno di ventilazione assistita per respirare perché le lesioni interferiscono direttamente con il controllo autonomo della respirazione. La LM toracica causa generalmente la perdita sensoriale e/o motoria nel tronco e nelle gambe, denominata paraplegia. La LM lombare tipicamente causa la perdita sensoriale e motoria nel basso addome e nelle gambe. Tutte le forme di LM possono anche comportare dolore cronico. Il grado e la gravità della perdita sensoriale, motoria e di autonomia causata da LM dipende non solo dal livello della lesione midollare, ma anche dalla “completezza” o “incompletezza” della stessa. Secondo l’International Standards for Neurological Classification of SCI e l’American Spinal Injury Association (ASIA) (scala di gravità della menomazione), una LM è considerata completa se sono assenti le funzioni motorie e sensoriali a S4-S5, mentre nella lesione non completa sono presenti alcune funzioni motorie e sensoriale al di sotto del livello della lesione, includendo i segmenti sacrali più bassi S4-S5, tale situazione è comunque una condizione seria e può provocare una menomazione grave.
La dimensione storica della lesione midollare L’inizio effettivo dell’assistenza sanitaria per la lesione midollare risale al lavoro del neurochirurgo americano Donald Munro al Boston City Hospital, negli anni trenta del secolo scorso (6). Il suo approccio fu seguito da Sir Ludwig Guttmann 5
Prospettive Internazionali sulla lesione del midollo spinale
Figura 1.1. Organizzazione longitudinale del midollo spinale (con segmenti cervicali, toracici, lombari e sacrali con differenti colorazioni), delle vertebre e nervi spinali ed una rappresentazione semplificata delle principali funzioni del midollo spinale.
 Nervi Funzioni C1–C4 Respirazione Movimento della testa e collo Nervi spinale cevicali C4–T1 Controllo della frequenza cardiaca Movimento degli arti superiori (Gomito-polso C5-C7, C8 Dito-T1)
Base del cranio
C1 C2 C3 C4 C5 C6 C7 C8 T1 T2 T3 T4 T5 T6 T7 T8 T9 T10 T11 T12
Vertebre (dorsali)
Nervi spinale toracici T1–T12 Controllo del tronco Regolazione temperatura Muscoli addominali
Conus medullaris Cauda equina
L1 L2 L3 L4 L5 S1 S2 S3 S4 S5 Nervo coccigeo Nervi spinale sacrali S2–S4/5 Intestino, vescica e funzione sessuale Nervi spinale lombari L1–S1 Movimento degli arti inferiori (anca, gamba e piede)
Coccige
6
Capitolo 1 Cos’è la lesione midollare
che fondò nel 1944 il reparto di LM al Stoke Mandeville Hospital nel Regno Unito che divenne il Centro Nazionale delle Lesioni Midollari nel 1952. Il tasso di mortalità per le LM era allora all’ 80% e successivamente iniziò a calare, grazie al cambio posturale ogni due ore ed alla prevenzione delle ulcere da pressione, insieme alla migliore gestione della vescica. Con la fisioterapia e la terapia occupazionale furono raggiunti risultati migliori nel recupero delle funzioni ed intervenne un’assistenza più olistica, attenta ai bisogni socioeconomici dei pazienti (7,8). Guttmann enfatizzò lo sport come metodo di terapia e fu il fondatore dei Giochi di Stoke Mandeville, i quali si svilupparono fino a divenire i Giochi Paralimpici nel 1960 (9). Questi primi centri divennero il modello per l’assistenza sanitaria alla PLM nel Regno Unito, negli Stati Uniti e negli altri paesi. L’esperienza di questo cambiamento nel trattamento delle PLM riflette inoltre uno sviluppo più ampio nella comprensione della disabilità in generale. La risposta sociale alla disabilità è cambiata profondamente negli ultimi decenni, grazie principalmente agli interventi delle stesse persone con disabilità. Il movimento delle persone con disabilità ha lottato per ottenere la completa inclusione e la partecipazione in tutti gli ambiti della società. Concettualmente, l’attenzione si è spostata dalla disabilità come un deficit del singolo individuo alla disabilità come risultato di interazioni complesse fra gli aspetti della salute dell’individuo con le sue funzioni e l’ambiente fisico, sociale e attitudinale. In parallelo a questo cambiamento concettuale, la disabilità è stata interpretata come questione relativa ai diritti umani. Questa trasformazione ben documentata (10–12) ha fatto nascere la Convenzione sui Diritti delle Persone con Disabilità (CRPD) delle Nazioni Unite (5). Le PLM hanno giocato un ruolo fondamentale nel movimento delle persone con disabilità in molti paesi, a partire dai primi pionieri dell’Independent Living [Vivere Indipendente] a Berkeley,
California, USA alla fine degli anni sessanta e settanta (10).
La lesione midollare come sfida dei sistemi sanitari e delle società La complessità dell’esperienza vissuta nella LM e le possibili variazioni di questa esperienza nel mondo indica che, nonostante sia una situazione particolarmente a bassa diffusione, la LM ha implicazioni più vaste nel monitoraggio dell’assistenza sanitaria. In linea di principio, un individuo con LM si troverà in ogni reparto clinico che il suo paese fornisce per la sua assistenza: pronto soccorso, terapia intensiva, chirurgia, assistenza medica per la stabilizzazione, in particolare la riabilitazione, che include il ritorno nella comunità, riabilitazione occupazionale ed assistenza primaria costante. L’assistenza alla PLM quindi mette alla prova l’adeguatezza dei servizi, sistemi e politiche di un paese. Può inoltre aiutare medici, operatori sanitari, ricercatori e politici a comprendere i pregi e difetti del loro sistema sanitario. L’assistenza alla PLM è un buon indicatore di come il sistema sanitario funziona o fallisce nel suo complesso. Oltre al settore sanitario, la PLM ha bisogno di servizi , risorse e accesso ai settori sociali, d’istruzione ed economici per condurre una vita ricca e piena. Girando lo sguardo verso la società civile, i gruppi di auto-aiuto, i gruppi dei pazienti ed altre organizzazioni che danno voce alle persone con disabilità giocano un ruolo cruciale nell’offrire conoscenza, consigli e sostegno, ma anche nel fare pressioni per i cambiamenti delle politiche. Se i governi e le Società falliscono nell’aiutare le PLM, è probabile che falliscano anche con persone affette da altre patologie/disabilità. I dati e la ricerca sulle esperienze di LM sono generalmente rilevanti per valutare le politiche di un sistema sanitario e per cercare di rimuovere le problematiche nell’assistenza sanitaria. Ma è vero anche il contrario: medici specializzati in LM e ricercatori possono trarre insegnamenti dalla ricerca ed applicarla ad altre 7
Prospettive Internazionali sulla lesione del midollo spinale
disabilità, che condividono alcune o molte delle menomazioni e sfide giornaliere che le PLM si trovano ad affrontare. Applicando quella ricerca, ad esempio, all’accessibilità dei mezzi di trasporto o ai servizi per il ritorno al lavoro si tenderà a concentrarsi su patologie e disabilità più diffuse, ed i risultati migliori disponibili non è detto che coinvolgano solo le PLM ma potrebbero aiutare anche persone con “problemi di mobilità” o “utilizzatori di carrozzine”. Questo rapporto prende in considerazione tutta la ricerca rilevante di alta qualità, sia quella diretta nello specifico alla LM che quella diretta in senso più ampio alla disabilità in generale.
Strumenti per la comprensione dell’esperienza della persona con lesione midollare Due strumenti sono indispensabili per comprendere l’esperienza della LM: ■ la Convenzione ONU per i diritti delle persone con disabilità (CRPD) dà un senso morale all’analisi della disabilità come parte dei diritti umani e come questione di sviluppo, ■ l’International Classification of Functioning, Disability and Health (ICF), che delinea, con chiarezza concettuale, un modello di funzionamento e disabilità ed è anche una classificazione epidemiologica per la raccolta dei dati e per la prassi clinica (vedi Riquadro 1.1). Il CRPD fornisce la prospettiva dei diritti umani di questo rapporto. Specifica i diritti civili, culturali, politici, sociali ed economici delle persone con disabilità, includendo le PLM. Il CRPD è il risultato di diversi anni di studi analitici con la rilevante partecipazione delle organizzazioni delle persone con disabilità ed altri gruppi della società civile. La Convenzione ONU definisce non solo le grandi aspirazioni – “...promuovere, proteggere, ed assicurare il completo ed eguale godimento dei diritti umani e delle libertà fondamentali delle 8
persone con disabilità, promuovendo il rispetto della loro intrinseca dignità” – ma anche diritti umani dettagliati e concreti per la salute, l’istruzione, l’occupazione e la vita familiare. Il CRPD, come vedremo chiaramente nei capitoli successivi, definisce in dettaglio le aree specifiche in cui la Convenzione richiede le riforme dei diritti umani. Gli argomenti centrali di questo rapporto – l’impatto dei problemi e degli atteggiamenti, il grado di accessibilità all’ambiente, la disponibilità di servizi sanitari e sociali, e la misura in cui le PLM possono partecipare all’istruzione, occupazione ed alla vita familiare e sociale – sono anche il focus degli articoli del CRPD. Inoltre, unicamente in questo documento sui diritti umani delle Nazioni Unite, si stabilisce che gli Stati Membri dovrebbero raccogliere dati statistici (Articolo 31) e dovrebbero istituire meccanismi di monitoraggio, indipendenti, sui diritti umani (Articolo 33) in modo da assicurare che ci siano prove del progresso risultanti dall’implementazione delle regole del CRPD. I paesi sono tenuti non solo a riformare leggi e modi di operare rispetto alla disabilità, ma sono anche tenuti a fornire prove che lo stiano facendo. Questo rapporto è stato progettato per rendere disponibili ai paesi e alle loro agenzie i dati da cui partire per evidenziare gli obblighi non adempiuti verso le PLM, nonché tutte le migliori pratiche per realizzare questi obblighi.
Sommario dell’IP-SCI Il rapporto segue la pubblicazione dell’OMS e della Banca Mondiale “Rapporto Mondiale sulla disabilità” del 2011, ed analizza la grave disabilità con maggior dettaglio di quanto sia stato possibile nel documento generale del 2011(15). I destinatari di questo rapporto sono politici, dirigenti sanitari, professionisti, rappresentanti di organizzazioni non governative ed organizzazioni delle persone con disabilità, e tutti coloro che sono impegnati a migliorare i servizi per le PLM, specialmente in paesi a basso e medio reddito.
Capitolo 1 Cos’è la lesione midollare
Riquadro 1.1. International Classification of Functioning, Disability and Health (ICF) [Classificazione Internazionale del Funzionamento, Disabilità e Salute] L’ICF è stata sviluppata attraverso un lungo processo che ha coinvolto il mondo accademico, medico e le persone con disabilità (13). L’ICF riconosce come determinanti non solo le patologie che sono alla base delle disabilità ma anche i fattori ambientali (prodotti e tecnologie, l’ambiente naturale ed edificato, sostegno e relazioni, atteggiamenti e servizi, sistemi e politiche). L’ICF riconosce inoltre come fattori personali, la motivazione e l’autostima, che possono influenzare la partecipazione della persona nella società. Distingue inoltre tra le capacità di una persona nello svolgere compiti e le performances effettive di quelle azioni – una distinzione che pone in evidenza il ruolo essenziale dell’ambiente in cui si trova la persona. Nell’ICF, i problemi sul funzionamento umano vengono riassunti in tre aree interconnesse: menomazioni come problemi di funzioni corporee o alterazioni della struttura corporea (ad es. paralisi o perdita del controllo intestinale e vescicale); limitazioni delle attività sono le difficoltà nell’eseguire una certa attività (ad es. camminare o mangiare); e le restrizioni alla partecipazione sono problemi che coinvolgono qualsiasi aspetto della vita (ad es. discriminazione nell’occupazione o nell’uso dei mezzi di trasporto). Le condizioni di salute ricomprendono malattie, infortuni e disturbi mentali o fisici, mentre le menomazioni sono specifiche riduzioni delle funzioni corporee, come la paralisi associata a condizioni di salute. I fattori ambientali possono essere barriere che peggiorano l’esperienza della PLM (ad es. mezzi di trasporto inaccessibili alle carrozzine), o facilitatori che migliorano quelle situazioni (ad es. servizi per carrozzine e riabilitazione). La disabilità nell’ICF è utilizzata per indicare le difficoltà incontrate in una o tutte le tre aree del funzionamento; deriva dall’interazione delle condizioni di salute con fattori contestuali, sia ambientali che personali, come rappresentato in figura (14).
Rappresentazione della Classificazione Internazionale del Funzionamento, Disabilità e Salute Patologia (disturbo o malattia)
Funzioni e strutture corporee
Activités
Partecipazione
Fattori ambientali
Fattori personali Fattori contestuali
Fonte: (14 ).
Dopo questo capitolo introduttivo, il rapporto analizza nel Capitolo 2 i migliori dati epidemiologici disponibili sulla prevalenza ed incidenza della LM nel mondo. Il Capitolo 3 esamina le cause principali di LM ed indaga sui programmi di prevenzione che intervengono su queste cause e sui fattori di rischio. Nel Capitolo 4 il rapporto offre una rassegna comprensiva della dimensione medica e riabilitativa della LM. Questo nel
Capitolo 5, viene associato ad una discussione sui sistemi sanitari, mettendo in relazione le migliori pratiche di intervento e di strategie di cura con i dati circa i sistemi necessari per rendere disponibili tali interventi. Nel Capitolo 6 il rapporto si concentra sull’esperienza vissuta dalle PLM, a partire dalle relazioni e dalle capacità, per poi continuare nel Capitolo 7 con le caratteristiche generali degli ambienti accessibili per le PLM, 9
Prospettive Internazionali sulla lesione del midollo spinale
seguito dall’osservazione approfondita di due delle più importanti aree di partecipazione – l’istruzione e l’occupazione – nel Capitolo 8. Il rapporto si conclude con le raccomandazioni generali nel Capitolo 9. International Perspectives on Spinal Cord Injury [Prospettive Internazionali sulla Lesione Midollare] offre una guida pratica per il miglioramento della vita delle persone con LM in tutto il mondo. Raccoglie prove e dati sui bisogni, raggiunti e non, ed evidenzia le pratiche tra tutte le varie possibilità di servizi nei vari Paesi che hanno superato con successo le difficoltà e le carenze dei servizi. I messaggi principali di questo rapporto sono i seguenti: ■ La LM ha un’ incidenza relativamente bassa, ma è una disabilità che richiede un elevato supporto economico. ■ L’incidenza della LM traumatica può essere marcatamente ridotta attraverso una serie di strategie di prevenzione.
■ I tassi di mortalità in seguito a LM possono essere ridotti attraverso un servizio sanitario appropriato con intervento tempestivo, che riduce il bisogno di essere riammessi in ospedale per complicanze secondarie. ■ L’essere dipendenti in conseguenza della LM può essere evitato attraverso la fornitura di ausili per la riabilitazione e l’assistenza. ■ La povertà e l’esclusione sociale associata a LM possono essere ridotti attraverso la rimozione delle barriere e fornendo un aiuto adeguato. La lesione midollare è un fenomeno che cambia la vita, ma la possibilità di interventi sanitari e sociali fa si che la LM non debba porre fine alla vita o imporre costi eccessivi alle famiglie e alla società.
Referenze 1. Gosselin RA, Coppotelli C. A follow up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 2. Allotey P et al. The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegics in Australia and Cameroon. Social Science & Medicine, 2003, 57:949-958. doi: http://dx.doi.org/10.1016/S0277-9536(02)00463-X PMID:12850119 3. Liverman CT et al., editors. Spinal cord injury: progress, promise, and priorities. Washington, DC, National Academies Press, 2005. 4. Weerts E, Wyndaele JJ. Accessibility to spinal cord injury care worldwide: the need for poverty reduction. Spinal Cord, 2011, 49:767. doi: http://dx.doi.org/10.1038/sc.2011.73 PMID:21720372 5. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 6. Eltorai IM. History of spinal cord medicine. In: Lin VW et al., eds. Spinal cord medicine: principles and practice. New York, NY, Demos Medical Publishing, 2003. 7. Silver JR. History of the treatment of spinal injuries. London, Springer, 2003. 8. Bodner DR. A pioneer in optimism: the legacy of Donald Munro MD. The Journal of Spinal Cord Medicine, 2009, 32:355356. PMID:19777856 9. Guttmann L. Sport and recreation for the mentally and physically handicapped. Royal Society of Health Journal, 1973, 93:208-212. doi: http://dx.doi.org/10.1177/146642407309300413 PMID:4276814 10. Driedger D. The last civil rights movement. London, Hurst, 1989. 11. Oliver M. The politics of disablement. Basingstoke, Macmillan and St Martin’s Press, 1990. 12. Charlton J. Nothing about us without us: disability, oppression and empowerment. Berkeley, CA, University of California Press, 1998. 13. Bickenbach JE et al. Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science & Medicine, 1999, 48:1173-1187. doi: http://dx.doi.org/10.1016/S0277-9536(98)00441-9 PMID:10220018 14. WHO. International classification of functioning, disability and health. Geneva, World Health Organization 2001, page 18. 15. WHO/World Bank. World report on disability. Geneva, World Health Organization, 2011.
10
Capitolo 2 Il quadro globale della lesione midollare
“Un giorno mi sono svegliato e fissavo il soffitto. Volevo girare la testa e alzare un braccio, ma non ci riuscivo. Non riuscivo a muovere nulla. Sentivo molto rumore, ma non vedevo niente. Un’infermiera è apparsa al mio fianco e volevo dirle qualcosa, ma non riuscivo a farmi sentire; avevo voglia di urlare, ma non riuscivo ad emettere suoni. Così ho chiuso gli occhi e li ho riaperti quando ho sentito chiamare il mio nome, ho guardato verso l’alto e ho visto i miei genitori. Anche se mi è sembrato che fosse passato solo un istante fra il chiudere gli occhi e il riaprirli nuovamente, in realtà era passato un intero giorno. I miei genitori mi hanno detto che avevo una tetraplegia e che ero in un ospedale a Bruxelles, in seguito ad un infortunio sul lavoro. Il mio collo era spezzato, ero totalmente paralizzato e non riuscivo a respirare autonomamente. Avevo sete e ho chiesto un po’ d’acqua; non riuscivo a bere nemmeno dalla cannuccia che mi hanno dato, perché non riuscivo ad ingoiare. Stavo lavorando in una casa quando ho perso l’equilibrio e sono caduto da una scala, non ne sono più molto sicuro. Sono caduto da 6 metri di altezza e sono finito sul cemento.” (Gunther, Belgio) “Ho subito una lesione cervicale (C5-C6) in un incidente stradale, all’età di 19 anni ed ora sono 30 anni che sto su una carrozzina. Vivo nella città più a nord del mondo, Hammerfest, e devo affrontare grandi sfide fisiche; con le strade coperte di neve per circa cinque mesi all’anno e con le basse temperature, mi è difficile uscire in carrozzina. Ho sempre avuto bisogno di moltissima assistenza dal momento della lesione ed allora la mia comunità aveva appena iniziato ad organizzare l’assistenza domiciliare. Da quel momento, ho avuto la possibilità di partecipare alla organizzazione dei servizi necessari ai miei bisogni ed alle mie esigenze e di avere una vita il più normale possibile, come cittadino.” (Kjell, Norway) “Ho subito una lesione midollare quattro anni fa, nel terremoto del Sichuan, quando avevo 30 anni. Ora utilizzo quotidianamente una carrozzina per i miei spostamenti.” (Chen, China) “Ho 51 anni ed ho una paraplegia di livello T6 completa, conseguente ad un problema vascolare. Ho subito un forte shock al momento della paralisi, perché nel 1984 il medico mi aveva comunicato una diagnosi errata. Non credo sia facile vivere in modo indipendente con una disabilità. Negli anni successivi alla mia paralisi, sono state molte le cose che mi hanno aiutato a convivere con la mia disabilità.” (Nipapan, Thailandia) “All’inizio del mese di novembre del 2002 sono caduto dal cavallo di un mio amico, mentre partecipavo ad una competizione ippica. Ho una tetraplegia incompleta, livello C6-C7, con un buon controllo delle braccia. Malgrado abbia perso la capacità di presa, le mani hanno capacità funzionali residue sufficienti per riuscire a compiere diverse attività, come reggere un bicchiere di vino (molto importante!) e firmare” (Anonimo, Nuova Zelanda)
2
Il quadro globale della lesione midollare L’ Articolo 31 della Convenzione sui Diritti delle Persone con Disabilità stabilisce che gli Stati Membri debbano raccogliere dati statistici allo scopo di definire ed applicare politiche che diano soddisfazione ai diritti definiti dalla Convenzione ONU, affinché le Persone con Lesione Midollare (PLM) ed altre disabilità possano partecipare a pieno a tutti gli ambiti della società, dalla vita familiare all’istruzione, al lavoro fino a quelli della comunità e della nazione. La validità e l’affidabilità dei dati riguardanti le Lesioni Midollari (LM), sono essenziali per prendere decisioni appropriate circa i programmi e le politiche per la prevenzione delle LM, per il miglioramento della qualità di vita delle PLM e per identificare le necessità di futuri servizi. Per stimarne l’impatto socio-economico è necessario avere un quadro epidemiologico completo delle LM, in termini di numero globale di persone che vivono con LM (prevalenza), di numero di nuovi casi (incidenza) e di cause di LM (vedi Tabella 2.1 per le definizioni degli indicatori) Questi dati devono essere raccolti ad intervalli regolari, per fare previsioni sulle necessità future. La politica e la programmazione basate su dati statistici a livello nazionale, richiedono inoltre informazioni circa i fattori ambientali che influenzano la vita con una LM, le condizioni socioeconomiche delle PLM, i loro bisogni soddisfatti ed insoddisfatti ed i costi associati ad una LM. Questo capitolo presenta informazioni epidemiologiche di base, utilizzando indicatori (vedi Tabella 2.1) di prevalenza, incidenza, mortalità, cause e costi delle LM traumatiche e non traumatiche (LMT e LMNT) ed analizza dati ed evidenze relative alle LM e come possano essere migliorati. I dati presentati sono stati raccolti da articoli di riviste recensite (peer-reviewed), da pubblicazioni governative e da reports di studi prospettici e retrospettivi che fanno riferimento a dati dei Registri delle LM e dei Registri anagrafici, a dati di ricoveri e dimissione ospedaliera e a dati di indagini sanitarie. Proprio per questo sono state effettuate revisioni sistematiche di pubblicazioni sull’epidemiologia della LM, da gennaio 2000 ad agosto 2012, ed è stata fatta una meta-analisi, ove necessario. Una spiegazione più completa sulla metodologia utilizzata per valutare i dati ed i loro limiti può essere trovata nelle Appendici Tecniche A e B.
13
Prospettive Internazionali sulla lesione del midollo spinale
Tabella 2.1 Esempi di indicatori epidemiologici nazionali, comunemente utilizzati per le lesioni midollari Indicatore Incidenza di LM Descrizione I dati sull’incidenza mostrano quante persone hanno subito una lesione al midollo spinale (LM) in una data popolazione ed in uno specifico periodo di tempo. Generalmente viene riportato il numero di nuovi casi di LM, per milione di abitanti, per anno. L’incidenza è una misura diretta del rischio di LM. I tassi di incidenza sono condizionati dall’eziologia, e ulteriormente dai dati demografici (genere, età), dall’occupazione e locazione geografica (urbana, rurale) variabili che possono differenziare/identificare gruppi a rischio, informando in tal modo le politiche e l’efficacia dei programmi di prevenzione. Il numero di persone nella popolazione che vivono con una LM, in un determinato momento. Viene misurato come numero per milioni di abitanti. La prevalenza è influenzata dal rischio e dalla durata di una patologia e quest’ultima è determinata dal recupero ottenuto o dalla morte. La raccolta regolare dei dati, suddivisi per età, genere e categorie socio-economiche, come occupazione e stato patrimoniale, può svelare modelli e tendenze importanti per comprendere l’esperienza vissuta di LM. Fattore che indica il numero di PLM per causa della lesione, luogo e attività. Uso e limitazioni Ci sono variazioni in funzione di diversi fattori: – Definizione della popolazione a rischio (cioè la popolazione di provenienza dei casi LM). – Definizione precisa di caso di LM – Completezza della valutazione dei casi incidenti LM secondo la definizione di caso. Ad esempio, l’incidenza di LM da trauma (TLM) potrebbe non includere quelle persone con LM che sono decedute sul luogo dell’infortunio. L’incidenza di LM non da trauma (NTLM) potrebbe non includere persone che incorrono in LM durante cure di fine-vita (ad es. metastasi spinale) La prevalenza è un indicatore dell’efficacia della prevenzione secondaria e del bisogno di assistenza sanitaria e supporto sociale.
Prevalenza
Eziologia
Tasso standardizzato di mortalità (SMR)
Tassi di letalità
Il SMR fornisce una stima standardizzata di mortalità nelle PLM rispetto alla popolazione in generale. Quando il SMR è pari ad 1 non c’è alcun incremento nel rischio di mortalità per le PLM; se maggiore di 1 allora l’incremento del rischio è presente. I requisiti necessari a calcolare il SMR per un gruppo sono: – il numero di PLM suddivisi per gruppi di età e genere; – decessi rilevati nelle PLM; – i tassi di mortalità specifici all’età e al genere della popolazione in generale. Numero assoluto dei numeri delle persone che sono decedute in seguito a LM. Se suddiviso per eziologia, si possono identificare ed implementare misure adguate.
Utile per pianificare a livello locale la prevenzione primaria, l’assistenza ai traumi ed i servizi di riabilitazione. Utile per calcolare i costi dell’assistenza sanitaria. Determina se il tasso di mortalità delle PLM sia maggiore o minore che nella popolazione in generale. Limitazione: Variazioni nelle stime del SMR fra diverse popolazioni possono riflettere in parte le variazioni del tasso di mortalità della popolazione in generale ed in parte la completezza delle constatazioni sul tasso di mortalità.
Mostra la relazione fra LM e le letalità. Per rendere le informazioni paragonabili, bisogna standardizzarle nei seguenti gruppi: numero di PLM, includendo quelle con TLM che muoiono sul luogo dell’incidente; letalità in ospedale; e letalità dopo la dimissione dall’ospedale: 30 giorni, 1 anno, 5 anni, etc.
14
Capitolo 2 Il quadro globale della lesione midollare
Cosa sappiamo a riguardo della lesione midollare? I dati riguardanti l’entità ed i costi della LM sono limitati. Solo alcuni dei Paesi ad alto reddito sono in grado di fornire statistiche nazionali. Le altre fonti di dati sono talmente poche e così varie dal punto di vista metodologico, che non è possibile calcolare stime affidabili circa la prevalenza o l’incidenza mondiale. I migliori dati disponibili relativi alla LM, forniscono un quadro generale che è stato sintetizzato ed analizzato nel dettaglio nel resto di questo capitolo. La LM è una condizione relativamente rara, ma che cambia la vita ed ha un costo notevole, con un rischio di mortalità che varia molto in base al livello di reddito del Paese e dipende pesantemente dalla disponibilità di una assistenza sanitaria di qualità e di servizi di riabilitazione. Non è noto quante Persone al mondo vivano con una LM, ma i dati di incidenza internazionale indicano che ogni anno da 250.000 a 500.000 persone subiscono una lesione midollare. La maggior parte di questi casi sono LM traumatiche, causate in primo luogo da incidenti stradali, cadute e violenza. Recenti studi evidenziano un aumento dell’età di insorgenza della LM ed un graduale incremento della percentuale dei casi di LMNT – in parte attribuibile all’invecchiamento della popolazione mondiale. I dati attuali mostrano che la LM è associata ad un elevato rischio di mortalità. Le PLM sono a maggior rischio di morte, soprattutto nel primo anno dall’insorgenza della LM, e anche nei Paesi ad alto reddito dove il progresso sanitario ha favorito un aumento della sopravvivenza, esse hanno ancora un rischio di mortalità elevato e hanno più probabilità di morire prima rispetto al resto della popolazione. Le PLM nei Paesi a basso reddito continuano a morire a causa di complicazioni secondarie prevenibili, che non rappresentano più una causa principale di decesso nei Paesi ad alto reddito. I costi della LM variano ampiamente a seconda del contesto e sono disponibili alcuni dati comparabili. Dai dati esistenti, è chiaro che
la LM comporta considerevoli costi diretti ed indiretti e che molti di questi costi sono a carico delle PLM. Il livello e la gravità di una LM hanno un’influenza significativa sui costi. I costi diretti sembrano essere più alti nel primo anno dopo l’insorgenza di una LM ma, nel corso della vita, i costi indiretti superano spesso quelli diretti. Vi è un urgente necessità di migliorare la quantità e la qualità della dei dati raccolti, relativi alla LM. Alla fine di questo capitolo vengono affrontati i problemi dei dati sulla LM e le raccomandazioni per migliorare le evidenze.
Prevalenza della lesione midollare I dati relativi alla prevalenza della LM sono importanti per quantificare il fabbisogno di assistenza sanitaria e di supporto sociale e per valutare gli effetti delle misure di prevenzione secondaria; sfortunatamente i dati sulla prevalenza della LM sono scarsi. Attualmente non ci sono stime globali o regionali della prevalenza di tutte le cause di LM. Qui vengono presentate dati di sei Paesi diversi (vedi Tabelle 2.2 e 2.3). Altri dati trovati in letteratura non sono stati inclusi, per problemi metodologici o perchè sono notevolmente datati e potrebbero non riflettere la situazione attuale. Dati Canadesi hanno indicato un tasso complessivo di prevalenza della LM (traumatica e non traumatica) di 2525 casi per milione di abitanti o di 85.000 persone nel 2010. La stima della prevalenza riferita all’età, per le LM in Canada, indica che le LMT sono prevalenti nelle popolazioni più giovani, mentre le LMNT in quelle più anziane (vedi Figura 2.1). Le stime di prevalenza delle LMT (vedi Tabella 2.2) variano da 280 casi per milione di abitanti in Finlandia (5) fino a 1298 casi per milione in Canada (1), sebbene questa variabilità sia probabilmente dovuta alla differenze nella metodologia e non rispecchi una reale differenza di prevalenza, pari a cinque volte in più. Le stime di prevalenza in Australia e Canada derivano da una sistema che riunisce dati sull’incidenza ed informazioni sulla durata della malattia. I più 15
Prospettive Internazionali sulla lesione del midollo spinale
elevati tassi Canadesi potrebbero indicare una tendenza del Nord-America o potrebbe essere che le stime attuali, con i migliori dati, utilizzate in Canada abbiano portato ad una sovrastima dell’ incidenza, mentre quelle impiegate in Australia sottostimino il tasso di incidenza. Gli altri Paesi presentano dati raccolti da ospedali, Registri nazionali e studi trasversali e longitudinali. Per comprendere più a fondo il confronto delle stime di prevalenza fra i vari Paesi, c’è bisogno di maggiori dati riguardanti le differenze demografiche,
sia per i tassi di incidenza correlati alle cause suddivisi per età e genere, sia per le aspettative di vita associate; queste informazioni non sono attualmente disponibili. Le stime di prevalenza delle LMNT (vedi Tabella 2.3) sono disponibili solo per l’Australia (367 casi per milione di abitanti) e per il Canada (1227 casi per milione di abitanti)(1,7). I dati Australiani sono tratti da uno studio condotto nello stato di Victoria, basato sulle aspettative di vita e su dati nazionali di outcome in riabilitazione,
Tabella 2.2 Prevalenza di TLM Paese Località Anno della stima 2008 Tipo di studio e popolazione di referenza Prospettico, trasversale, registro nazionale Retrospettivo, registro dati dell’ospedale LM pediatrico/ adulto Adulto, pediatrico Prevalenza per milione di abitanti 440
Repubblica Islamica dell’Iran Finlandia
Teheran
Norvegia
Islanda
Canada
Centro RiabilitazioneKäpylä, Helsinki; Ospedale Universitario Centrale di Helsinki, Helsinki Province di Hordaland e Sogn og Fjordane Landspitali Ospedale Universitario, Reykjavík Tutta la Nazione
1999
Adulto, pediatrico
280
2002
2009
2010
Australia
Tutta la Nazione
1997
Retrospettivo, longitudinale/ di gruppo usando dati ospedalieri Retrospettivo, longitudinale/ di gruppo usando dati ospedalieri Retrospettivo, trasversale, Registro Nazionale, studio di modellazione Retrospettivo, Registro Nazionale, studio di modellazione
Adulto, pediatrico
365
Adulto, pediatrico
526
Adulto, pediatrico
1298
Adulto
681
Tabella 2.3 Prevalenza di NTLM Paese Canada Australia Località Tutta la Nazione Stato di Victoria Anno della stima 2010 2010 Tipo di studio e popolazione di referenza Retrospettivo, trasversale; Registro Nazionale Retrospettivo, trasversale; Registro Nazionale LM pediatrico/ adulto Adulto, pediatrico Adulto, pediatrico Prevalenza per milione di abitanti 1227 367 (455 per adulti di età maggiore o uguale a 16 anni)
16
Capitolo 2 Il quadro globale della lesione midollare
estrapolati poi al resto del paese (7). I risultati mostrano una prevalenza di 455 casi per milione di abitanti, per adulti di età uguale o maggiore di 16 anni, suggerendo che l’invecchiamento, mostrato nei dati demografici, potrebbe essere la causa primaria di incremento della prevalenza delle LMNT. Le maggiori stime di prevalenza in Canada potrebbero derivare dalle stesse ipotesi fatte nello studio, piuttosto che da una reale differenza di prevalenza.
Incidenza della lesione midollare La stima globale dell’incidenza della LM è di 40–80 nuovi casi annui per milione di abitanti, sulla base di studi di qualità sull’incidenza di ogni tipo di causa di lesione midollare, condotti a livello nazionale. Questo significa che ogni anno da 250.000 a 500.000 persone subiscono una lesione midollare. Gli studi che documentano i dati di incidenza della LM, di origine traumatica e non, forniscono informazioni sulle caratteristiche generali della popolazione con LM. La raccolta di queste informazioni è importante, dal momento che le risorse
necessarie e le caratteristiche della popolazione con LM traumatica e non traumatica sono differenti. La percentuale di LMT varia in larga misura e sembra essere differente fra Paesi (8–11). Dati storici riportavano che fino al 90% dei casi di LM aveva origine traumatica, ma studi più recenti indicano, negli ultimi anni, una lieve tendenza all’incremento della percentuale di LMNT (12). La popolazione con LMNT è generalmente più anziana, con malattie croniche che richiedono cure più costose, ma per periodi più brevi. La maggior parte degli studi sull’incidenza della LM prendono in esame o la LMT o quella LMNT, probabilmente a causa delle differenze delle fonti e dei metodi di raccolta dei dati. L’incidenza e l’eziologia delle LMT e delle LMNT sono quindi di seguito esaminate separatamente. I dati relativi alle LMNT sono limitati in confronto a quelli delle LMT.
Lesione midollare traumatica Incidenza Considerando i dati disponibili, non è possibile desumere stime attendibili nazionali sull’incidenza
Figura 2.1 Stime di prevalenza LM specifiche all’età in Canada nel 2010
 6000 5000 4000 Casi Annuali 3000 2000 1000 0 0–4 TSCI 5–9 10–14 15–19 20–24 25–29 30–34 35–39 40–44 45–49 50–54 55–59 60–64 65–69 70–74 75–79 80–84 85–89 90+ Età NTSCI Pro lo dell' età della popolazione 3 000 000 2 500 000 2 000 000 1 500 000 1 000 000 500 000 0
Popolazione
Fonte: Adattato da (1) con l’autorizzazione di S. Karger AG, Basel.
17
Prospettive Internazionali sulla lesione del midollo spinale
delle LMT. L’analisi statistica è resa impossibile dalla carenza di fattori predittivi affidabili. I tassi di incidenza delle LMT di ogni Paese variano largamente nel mondo – da 13 a 53 casi per milione di abitanti, come mostrato in Figura 2.2. I tassi di incidenza delle LMT tendono ad essere più elevati nel Nord America rispetto all’Europa, probabilmente a causa di un più elevato numero di casi di violenza negli USA. Dati di incidenza da altri Paesi o non esistono o hanno una andamento fluttuante eccessivo, fra Paesi ed al loro interno, così che diventa difficile elaborare statistiche riassuntive valide. Ad esempio i dati raccolti dalla Città di Pechino, in Cina, indicano una stima elevata di 60,6 casi per milione di abitanti (21), mentre la Regione di Tianjin riporta un’incidenza di 23,7 casi per milione di abitanti (22). Le notevoli variazioni, relative all’incidenza delle LMT nei vari Paesi, sono dovute a diversi fattori: ■ Differenze naturali nell’incidenza tra i vari Paesi, dovute alle differenze dei fattori di rischio. ■ Differenze attribuibili agli approcci metodologici. ■ Popolazione analizzata (adulti, bambini o entrambi). L’incidenza della LMT nei bambini è bassa. Studi che riportano solo l’incidenza negli adulti sovrastimano il tasso generale della popolazione e rendono il paragone difficile con gli studi che aggregano i dati di incidenza fra adulti e bambini. ■ Rappresentatività dei dati. Con l’eccezione di alcuni Paesi, che hanno un Registro Nazionale delle LM, come la Finlandia, le stime di incidenza sono estrapolate da dati delle città o regionali e potrebbero non essere rappresentative dell’intero Paese. Nonostante queste variazioni, sono comunque emerse alcune tendenze dai dati di incidenza delle LMT nei vari Paesi: 1. L’incidenza delle LMT sta diminuendo in alcuni Paesi, mentre in altri risulta costante o in 18
aumento. Studi condotti negli USA, in Finlandia ed in Australia hanno dimostrato una diminuzione nell’incidenza delle LMT dovute a incidenti stradali. Tuttavia, questo dato non è evidente in tutti i Paesi sviluppati. Dati provenienti da due Province norvegesi hanno mostrato un incremento costante nell’incidenza delle LMT nelle decadi comprese tra il 1952 ed il 2001, passando da 9,9 a 34,5 casi per milione negli uomini e da 1,9 a 8,2 casi per milione nelle donne (3). Nonostante in Francia si sia riscontrato un forte decremento dell’incidenza dovuta ad incidenti stradali, l’incidenza di LM è rimasta costante (23). Questo riflette un cambiamento di tendenza, con una riduzione dell’incidenza di LM tra gli automobilisti ed un incremento dell’incidenza tra motociclisti, pedoni e ciclisti. 2. Nelle LMT degli adulti, c’è un incidenza considerevolmente maggiore negli uomini. Mentre negli studi in ambito pediatrico normalmente sono riportate percentuali equilibrate fra maschi e femmine (24,25), gli studi negli adulti mostrano un rapporto di 2:1 fra maschi e femmine Figura 2.2 Variazione globale delle stime di incidenza annuale di LMT per ogni Paese Referenza
Canada Estonia Islanda Spagna Francia Australia Finlandia Irlanda Qatar Paesi Bassi 0 10 20 30 40 50 60 Incidenza annuale grezza per milione di abitanti
a b c d e f g h i j
Fonti: a (1); b (13); c (2); d (14); e (15); f (16); g (17); h (18); i (19); j (20).
Capitolo 2 Il quadro globale della lesione midollare
ed alcuni riportano anche rapporti molto più elevati. Ad esempio, sono state riportati rapporti fra maschi e femmine eccessivamente elevati nella Regione di Thessaloniki in Grecia (7,3:1) (26), in Irlanda (6,7:1) (18), nel Qatar (8,3:1) (19), ed a Stoccolma, Svezia (3,3:1) (26). I dati di incidenza della LMT negli USA mostrano che i maschi hanno tassi più elevati di LMT in tutte le fasce d’età, con un picco tra i 16 e 21 anni, dove l’82% dei casi di LTM si verifica nei maschi (vedi Figura 2.3). Questi risultati supportano l’ipotesi che l’incidenza delle LM sia parzialmente in funzione dei comportamenti legati al sesso – consumo di alcol, comportamento alla guida e pratica di sport ad alto rischio – presenti dopo l’infanzia (13,29–31). 3. È più probabile che una LMT si verifichi nei giovani adulti e negli anziani. Si rilevano due picchi massimi d’incidenza delle LMT associati all’età – nei giovani adulti (maschi: 20–29 anni; femmine: 15–19 anni) e negli anziani (maschi >70; femmine >60), come evidenziato nell’esempio dei tassi di incidenza delle LMT, correlati all’età e al genere, in Canada in Figura 2.4 (1). L’aumento dell’incidenza dopo i 65 anni di età è una tendenza osservata solo di recente. Uno Figura 2.3 Distribuzione di LMT per gruppi d’età e sesso 100 Proporzione della popolazione SCI (%) 80 60 40 20 0
studio Canadese mostra una incidenza di 51,4 casi per milione di abitanti, nelle persone con età maggiore di 60 anni (32), dato supportato da studi in Cina ed in Australia (16,33). In Australia, negli ultimi 25 anni, la percentuale di lesioni midollari nelle persone di età uguale o maggiore a 65 anni, è aumentata dal 4% al 12% (34). Questi risultati sono conseguenza di una maggiore incidenza di cadute negli anziani (vedi Figura 2.4 e Figura 2.7). I tassi di incidenza delle LMT in età pediatrica sono bassi (4–8 casi per milione) nella maggior parte dei Paesi in cui sono disponibili dati (24,25,36), con l’eccezione degna di nota degli USA, dove uno studio riporta un’incidenza di LMT pediatrica di circa 20 casi per milione di abitanti (37). Gli studi generalmente mostrano tassi di incidenza intermedi per gli adolescenti e gli adulti di mezza età (1–3). Ci sono alcune evidenze che stia aumentando l’età dell’insorgenza della lesione. In Norvegia, ad esempio, l’età media della LMT è aumentata da 40,2 a 48,9 anni tra il 1952 ed il 2001, con il cambiamento più significativo dell’età media al momento della lesione riscontrato nelle donne – con un aumento da 24,7 a 57,7 anni (3). Figura 2.4 Tassi di incidenza specifici per l’età ed il sesso delle LMT in Canada 140 Incidenza annuale di SCI per milione di abitanti 120 100 80 60 40 20 0 0–4 5–14 15–19 20–29 30–39 40–49 50–59 60–69 70+
Maschio
Femmina
0–5 Maschio
6–12 Femmina
13–15 Gruppi d’età
16–21
22+
Gruppi d’età
Fonti: (27,28).
Fonte: (1).
19
Prospettive Internazionali sulla lesione del midollo spinale
Eziologia
Basandosi sulle evidenze disponibili sull’eziologia delle LMT, di tutti gli Stati membri dell’ OMS, le tre cause più comuni sono i trasporti (in particolare gli incidenti stradali), le cadute e la violenza (vedi Figura 2.5). Anche se i grafici riportati in Figura 2.5 dimostrano differenze tra Aree geografiche, potrebbero non rappresentare adeguatamente le differenze relative alle cause o al contesto in un intero Paese. Gli incidenti stradali sono la causa principale di LMT. Nella Regione Africana, i trasporti sono responsabili di quasi il 70% dei casi. Negli altri Paesi dell’ OMS i trasporti, come percentuale complessiva, variano tra il 40% della Regione del Sud-Est Asiatico ed il 55% della Regione del Pacifico Occidentale. Uno studio condotto nel Mississipi, USA, mostra che, in almeno il 75% degli incidenti automobilistici con conseguente LM, le cinture di sicurezza non erano disponibili o non erano state utilizzate (31). Analogamente, uno studio sulla LM in Nigeria, riporta che nessuno, fra i 63 pazienti vittime di incidenti stradali, stava utilizzando le cinture di sicurezza (38), il che dimostra l’importanza dell’uso delle
cinture di sicurezza per ridurre le LM nelle persone a bordo di automobili (vedi Capitolo 3 per maggiori dettagli). Le cadute sono la seconda principale causa di LMT. Le cadute rappresentano poco più del 40% dei casi nelle Regioni del Mediterraneo Orientale e del Sud-Est Asiatico. Ad esempio, in Nepal uno studio riporta che il 40% delle lesioni al midollo spinale risultano da cadute dagli alberi, durante la potatura ed il 28% risultano da cadute dai palazzi (81). La Regione Africana riporta la percentuale più bassa (14%) di cadute, mentre gli altri Paesi dell’ OMS mostrano percentuali comprese tra il 27% ed il 36%. La violenza, includendo l’autolesionismo, è la terza causa più comune di LMT. Le percentuali di atti di violenza che causano LMT , variano notevolmente fra le Aree delle Americhe, dell’Africa e del Mediterraneo Orientale, che riportano rispettivamente i tassi più alti, pari al 14%, 12% e 11%. Alcuni dati, specifici per alcuni paesi – in particolare quelli in stato di guerra – mostrano tassi molto più elevati, come l’Afghanistan che riporta il 60% di tutti i casi di LMT attribuibili alla violenza (56). La percentuale dei casi di LMT
Figura 2.5 Distribuzione delle LMT nei Paesi dell’OMS 80 60 40 20 0
Pourcentage de cas
Afrique Sports
Les Amériques Agressions Transport
Méditerrannée orientale Chutes
Europe Autre
Asie du Sud-Est Non spéci é ou inconnu
Paci que Occidental
Nota: Il numero dei Paesi che forniscono dati per tali sintesi di area sono i seguenti: Africane 4 paesi; Americane 4; Mediterraneo Orientale 5; Europeo 13; Sud-Est Asiatico 3; e Pacifico Occidentale 3 paesi. Fonti: Africane – (38–45); Americane (12,30,32,35,46–52–45); Mediterraneo Orientale (4,53–56); Europeo (2,3,9,13,17,18,20,26,57–67); Pacifico Occidentale (16,21,22,34,73–80).
20
Capitolo 2 Il quadro globale della lesione midollare
attribuibili agli atti di violenza è alta anche in Brasile al 42% (10), in Turchia al 25% (64), in Sud Africa al 21% (44). Negli USA, l’11,7% dei casi di LM sono causati da armi da fuoco (82), di cui il 28% occorsi in specifiche fasce d’età e particolari gruppi entici (27). Le percentuali in Europa Occidentale si aggirano intorno al 4% (59), mentre alcuni Paesi come Norvegia, Canada e Australia riportano una percentuale inferiore al 2% (3,16,30). Infine, è stato dimostrato che il tentato suicido contribuisce ad oltre il 10% dei casi di LMT in Israele ed in Finlandia (5,8). In tutte le Aree geografiche, le attività sportive e ricreative contribuiscono a meno del 10% di tutti i casi di LMT , con le Americhe che riportano la percentuale più alta di LMT causate da sport (8%). Tuttavia, in alcuni casi, i dati di alcuni Paesi mostrano tassi ancora più elevati, negli USA al 28%(27), nella Repubblica della Corea al 25% (83) e in Francia al 22% (84), oppure tassi più bassi, come in Nigeria, dove gli sport contribuiscono solo all’ 1,7% di tutti i casi di LMT (43). Le cause di LMT possono anche essere attribuite ad attività, luoghi e circostanze. Gli infortuni sul lavoro contribuiscono ad almeno il 15% di tutti i casi di LMT (2,8,16,18,26,60,85). L’utilizzo di alcool o droghe è stato identificato come
fattore determinante di una LMT nel 34% di tutti i casi in British Columbia – Canada (30) e nel 34% dei casi di trauma associati ai trasporti nel Mississipi, USA (31). L’età ed il sesso influenzano l’eziologia della LMT in tutte le fascie di età. Basandosi sui dati delle LM in età pediatrica e nei giovani adulti negli USA (vedi Figura 2.6) – dati supportati nella letteratura di altri Paesi – le LM da cause mediche o chirurgiche sono prevalenti al disotto di un anno di età. Dalla nascita ai cinque anni di età, il 65% di tutti i casi di LMT sono attribuibili ad incidenti automobilistici (28). I trasporti (cioè incidenti stradali) permangono la causa principale di LMT pediatrica e nei giovani adulti, con una percentuale più alta di LM nelle bambine che nei bambini. É stato dimostrato come gli atti di violenza causino più LM nei maschi di ogni età, anche se queste differenze sono statisticamente significative solo al di sopra dei 5 anni di età. Gli sport causano più LMT nei ragazzi che nelle ragazze, dopo i 13 anni di età. Questi dati coincidono con quelli di altri Paesi, con alcune eccezioni. Due studi, condotti su bambini di età media di 9 anni, mostrano
Tendenze demografiche
Figura 2.6 Eziologia di LM per gruppi di età (in persone giovani) 80 60 40 20 0 0–5 6–12 13–15 Gruppi d'età Sport Aggressione Trasporti Cadute Altro Medico/Chirurgico 16–21 22+
Percentuale dei casi
Fonti: (27,28).
21
Prospettive Internazionali sulla lesione del midollo spinale
percentuali più elevate da episodi di violenza e da aggressione in Brasile e da cadute nel Regno Unito (10,86). Mentre i trasporti permangono una delle cause principali di LM in ogni fascia d’età, le cadute diventano la causa più comune dopo i 60 anni d’età, come evidenziato in Figura 2.7, dai dati degli USA, presi dal Rapporto Annuale Statistico 2011 del National Spinal Cord Injury Statistical Center (NSCISC) (35). Uno studio in Cina, che analizzò specificamente l’altezza delle cadute, mostrò che le cadute dall’alto erano più comuni in età compresa fra i 15 e 44 anni e le cadute da piccole altezze (meno di un metro) sono più comuni in età maggiore ai 45 anni (80), come illustrato in Figura 2.8.
Lesione midollare non-traumatica Incidenza Gli studi condotti sulla LMNT sono in numero assai minore rispetto a quelli sull’incidenza di LMT, con l’eccezione degli studi specifici sulla spina bifida (vedi Riquadro 2.1). I tassi di incidenza globale e regionale non possono essere definiti, in quanto gli studi esistenti non sono rappresentativi o comparabili a causa di problemi metodologici, come differenti criteri di inclusione
o esclusione, la constatazione dei casi incompleti, o inadeguatezze nel riportare la popolazione a rischio (87). Il tasso di incidenza delle LMNT in Canada è stimato pari a 68 casi per milione di abitanti (1). Nelle stime Australiane, usando dati dello stato di Victoria, si ha un’incidenza di 26 casi per milione di abitanti (87–89). I dati raccolti in Spagna, in un Ospedale con un reparto specializzato per LM indicano un tasso pari a 11,4 casi per milione di abitanti (90). L’incidenza delle LMNT varia sia con l’età che con il sesso. Come nella LMT, il tasso di incidenza delle LMNT è più alto negli uomini che nelle donne. Al contrario delle LMT, l’incidenza delle LMNT aumenta costantemente con l’età (vedi Figura 2.9 ad esempio), con il rischio che è probabilmente influenzato dall’aumento di malattie con l’avanzare dell’età. Visto che la LMNT è più comune nelle fasce d’età più avanzata (89), e dato l’invecchiamento generale, l’incidenza delle LMNT andrà aumentando e potrebbe nelle prossime decadi superare quella delle LMT (7).
Eziologia
Vi sono pochi dati nazionali affidabili riguardanti l’eziologia delle LMNT, ma alcuni studi suggeriscono che le cause principali sono i tumori e le patologie degenerative della colonna vertebrale,
Figura 2.7 Eziologia di LM per gruppi di età (in tutte le persone) 80 60 40 20 0
Percentuale dei casi
<15
16–30
31–45 Groupe d'âge
46–60
61–75
76–99
Sports
Aggressione
Trasporti
Cadute
Altro
Non speci cato o sconosciuto
Fonti: (35).
22
Capitolo 2 Il quadro globale della lesione midollare
seguite dai disturbi vascolari e dalle malattie autoimmuni (11,59,62,122–124). In Paesi come l’India, il Perù e la Svezia, dove l’incidenza della tubercolosi e di altre malattie infettive è alta, queste rappresentano le cause prevalenti di LMNT, eccetto i tumori (123,125,126). I casi derivanti da malattie congenite e genetiche, come la spina bifida, non vengono inseriti in questi studi, perché normalmente vengono raccolti in contesti differenti.
Mortalità ed aspettative di vita In questo paragrafo viene riassunto ciò che è noto circa l’impatto della LM sul rischio di mortalità e sulle aspettative di vita – informazioni essenziali per una pianificazione adeguata e per l’allocazione delle risorse. I miglioramenti nel saper riconoscere una LM, nella valutazione e gestione prima del ricovero in ospedale, nei servizi di assistenza al trauma, nell’assistenza medica e nei servizi di riabilitazione hanno determinato, nei Paesi ad alto reddito, un’aspettativa di vita maggiore per Figura 2.8 Distribuzione dell’eziologia per gruppi d’età in Cina 80
le PLM e contemporaneamente hanno ridotto il rischio di mortalità derivante dalle complicazioni secondarie. Le PLM continuano ad avere una maggiore possibilità di morire – e morire più giovani – rispetto alle persone senza LM. Sono anche maggiormente predisposte a morire a causa di alcune determinate problematiche di salute, rispetto alla popolazione in generale. Nella maggior parte dei casi, il primo anno dopo la lesione è quello in cui il rischio di mortalità è più elevato per le PLM e molte PLM, nei Paesi a basso reddito, continuano a morire per complicanze secondarie prevenibili. Le PLM muoiono prima rispetto alle persone senza LM. In generale, gli studi hanno indicato che le PLM sono da 2 a 5 volte più predisposte a morire prematuramente rispetto alle Persone senza LM (vedi Tabella 2.4). Un altro modo per valutare gli effetti della LM, è considerare il suo impatto sulle aspettative di vita, cioè quanto a lungo una persona può aspettarsi di vivere. Pochi studi paragonano le PLM alla popolazione in generale. Tuttavia, uno studio Australiano ha mostrato che individui con un livello di LM compreso tra C1 e C4, all’età di 25 anni, hanno solo il 70% Figura 2.9 Incidenza specifica relativa all’età ed al genere di LMNT in Australia 140 Incidenza annuale di NTSCI per milione di abitanti 120 100 80 60 40 20 0 15–24 25–34 35–44 45–54 55–64 65–74 75–84 85+ Gruppi d’età Maschio Femmina
60 Eziologia (%)
40
20
0 15–24 25–34 35–44 45–54 Età (anni) Cadute da 1 metro Altro 55–64 ≥65
MVCs Caduta di oggetti
Cadute dall’alto
Nota: MVCs = Motor vehicle crashes [Incidenti automobilistici] Fonti: Riproduzione da (80) con autorizzazione di Maney Editore.
Fonte: (89).
23
Prospettive Internazionali sulla lesione del midollo spinale
Riquadro 2.1 Incidenza della Spina Bifida La maggior parte degli studi stimano che l’incidenza della spina bifida vari da 2 a 12 casi per 10.000 nati vivi. Alcuni studi mostrano tassi molto più elevati, includendo quelli dell’ Oman (32 per 10.000) e della Cina (58 per 10 000). Una meta-analisi estrapolata da questo rapporto, mostra un tasso d’incidenza globale per la spina bifida di 4,5/10 000 (95% IC: 3,7–5,3) negli studi che utilizzano dati di nati vivi, mentre quelli che usano dati di nati vivi e morti o nati vivi, morti e gravidanze interrotte (Termination of Pregnancy – TOP) mostrano tassi di incidenza rispettivamente di circa 10,0/10 000 (95% IC:8,1–11,8) o 9,1/10 000 (95%IC:6,7–11,4), (vedi Appendice Tecnica C per metodi e terminologia utilizzata). Sarebbe quindi logico aspettarsi un tasso di incidenza più elevato dagli studi di quei Paesi che considerano i dati sia dei nati vivi che morti e le TOP. Tuttavia, come illustrato nella figura in basso, ciò non è vero. Questo potrebbe essere frutto delle variazioni dei dati utilizzati per il calcolo, oltre che delle variazioni dell’incidenza di spina bifida fra i vari Paesi.
Incidenza Spina Bifida Paese Stati Uniti Perù Malawi Arabia Saudita Turchia Brasile Israele Congo, Repubblica Dominicana TOTALE PARZIALE Nati vivi e morti Oman Svezia Costa Rica Repubblica Ceca Messico Galles, Regno Unito Canada Cile Argentina Camerun Australia Sud Africa Repubblica Islamica di Iran* Spagna* Cina* TOTALE PARZIALE Nati vivi, morti e gravidanze interrotte Australia Cina Svezia Norvegia Regno Unito Federazione Russa TOTALE PARZIALE
Referenza a b c d e f g h
i j k l m n o p q r s t u v w
Nota: Questa figura è una rappresentazione Forest e fornisce una sintesi grafica ed una sintesi statistica della meta-analisi condotta sui tassi di incidenza di spina bifida segnalati in tutto il mondo. I dati utilizzati nella meta-analisi sono stati estratti in maniera sistematica dagli studi identificati come rilevanti nella letteratura. Per ogni studio la grandezza dei riquadri grigi è proporzionale al peso assegnato nella meta-analisi. L’intervallo di confidenza 95%, viene rappresentato in ogni studio da linee nere orizzontali che attraversano le stime puntuali dell’incidenza della spina bifida. La sintesi del tasso d’incidenza della spina bifida è rappresentata dalla forma di diamante, la cui ampiezza rappresenta l’intervallo di confidenza 95%, centrato sulla statistica di sintesi. Nota: * = sottogruppo nella meta-analisi Fonti: a (91); b (92); c (93); d (94); e (95); f (96); g (97); h (98); i (99); j (100);k (101); l (102); m (103); n (104); o (105); p (106); q (106); r (107); s (108); t (109); u[(110);(111)]; v[(112);(113)]; w[(114);(115);(116)]; x (117); y (118); z (119); aa (120); ab (121); ac (120).
x y z aa ab ac
0 10 20 30 40 50 60 70 Incidenza spina bi da/ 10 000 gravidanze
24
Capitolo 2 Il quadro globale della lesione midollare
delle aspettative di vita rispetto alla popolazione in generale, (vedi Figura 2.10) (34). Nel primo anno dopo la lesione si ha il rischio di mortalità più elevato per le PLM (57,129). Fra le PLM, il rischio di mortalità dipende dal livello e dalla gravità della lesione. I tetraplegici muoiono prima dei paraplegici (34,127,130). Uno studio Finlandese ha mostrato che il Tasso di Mortalità Standardizzato (TMS) per la paraplegia è di 2,3, a confronto di 3 per la tetraplegia (127), mentre in Australia il TMS per la paraplegia è pari a 1,27, rispetto al 2,2 per la tetraplegia (34). Lo studio Finlandese ha mostrato inoltre che la mortalità è maggiore nelle PLM completa rispetto a quelle con lesione incompleta; in caso di lesione completa, il Tasso di mortalità raddoppia per le persone con paraplegia e quasi triplica per quelle con tetraplegia (127). Nei paesi sviluppati le aspettative di vita stanno aumentando dagli Anni Cinquanta. Studi longitudinali in contesti ad alto reddito, hanno mostrato un aumento costante delle aspettative di vita per le PLM. Uno studio negli Stati Uniti sulle LMT ha osservato, negli anni fra il 1973 ed il 2004, una riduzione della mortalità nei primi due anni dopo la lesione, mentre la mortalità negli anni successivi ai primi due rimaneva piuttosto stabile (131). Analogamente uno studio ha mostrato, fra il 1981 ed il 1998, un calo annuale del tasso di mortalità del 3%, nelle LMT; in particolare il tasso di mortalità si è ridotto nei maschi, nei bianchi e nelle vittime di incidenti stradali (132). Questo cambiamento riflette i miglioramenti
Figura 2.10 Aspettative di vita in Australia in base all’età raggiunta per PLM in confronto alla popolazione in generale
 100 95 90 Aspettative di vita (%) 85 80 75 70 65 60 55 50 25 35 45 Età (anni) Tutto D (%) T1–S5 ABC (%) C5–8 ABC (%) C1–4 ABC (%) 55 65
Nota: A: paralisi completa; B: funzione sensoriale solo sotto al livello di lesione; C: funzioni motorie incomplete sotto il livello di lesione; D: da discreta a buona funzione motoria sotto il livello di lesione. Fonte: (34).
dell’assistenza sanitaria e della medicina riabilitativa per PLM, negli ultimi 60 anni. Le patologie secondarie associate a LM non sono più le cause principali di decesso nelle PLM, nei Paesi ad alto reddito. Nei Paesi con risorse elevate c’è stata una variazione nella cause principali di decesso, dalle complicanze urologiche,
Tabella 2.4 Rapporti standardizzati di mortalità per LMT in quattro Paesi Paese Finlandia Norvegia Estonia Australia Località Helsinki Province di Hordaland e Sogn og Fjordane Tutta la Nazione Tutta la Nazione Anni 1976–2005 1997–2001 1997–2001 1986–1997 LMT pediatrico/ adulto Adulto Adulto e Pediatrico Adulto e Pediatrico Adulto TMS 2,7 1,9 5 2,1
25
Prospettive Internazionali sulla lesione del midollo spinale
come l’urosepsi o l’insufficienza renale, a cause di morte simili a quelle della popolazione in generale, come i problemi respiratori, in particolare modo le polmoniti e l’influenza (11,50,130,133,134). Alcuni studi hanno trovato alti tassi di mortalità per malattie cardiache, suicidi, e problemi neurologici (11,50,127,130,133). Tuttavia le PLM muoiono a causa di queste patologie più frequentemente rispetto alle Persone nella popolazione in generale. Ad esempio, i risultati di uno studio in Norvegia indicano un aumento globale del rischio di mortalità da malattie respiratorie nelle LM, rispetto alla popolazione in generale, con un TMS di 1,96 (135). In Australia, uno studio ha trovato un TMS da cause specifiche: 17,11 per la polmonite e l’influenza, 4,37 per il suicidio e 6,84 per le malattie del sistema urinario (34). Uno studio Norvegese ha riscontrato che le malattie respiratorie, la cardiopatia ischemica, il cancro ed il suicidio sono le causi più comuni di decesso (57). In Paesi a basso reddito, le PLM continuano a morire a causa di complicazioni secondarie prevenibili, ad es. complicanze urologiche e lesioni da pressione. Nei Paesi con poche risorse, sebbene vi siano pochi dati a causa dell’elevatissimo tasso di non adesione dei pazienti al follow-up (41), le prove aneddotiche indicano che le complicanze urologiche rimangono una causa comune di decesso (136). Nei Paesi a basso reddito, vista l’assenza di assistenza sanitaria adeguata, le sepsi fatali provocate da lesioni da pressione non curate, sono una causa comune di decesso (45,136). I tassi di mortalità per le PLM sono fortemente influenzati dalla qualità del sistema sanitario, in particolare del pronto soccorso. Il trasporto e la tempistica di ricovero, successivi alla lesione, sono fattori importanti per la sopravvivenza. Le prime 24 ore dopo una LM sono le più critiche per la sopravvivenza. Uno studio in Nigeria ha riscontrato che tra i fattori predittivi di mortalità dopo 6 settimane, sono inclusi l’essere in una posizione rannicchiata durante il trasferimento (odds ratio di 23,52) ed il presentarsi 24 ore o più dopo la lesione 26
(rapporto di probabilità/odds ratio di 5,48). Sebbene la mortalità complessiva negli Ospedali in contesti ad elevate risorse, come il Canada e gli Stati Uniti, sia rispettivamente di 11,6% e 6,1% (137,138), in Sierra Leone si ha un tasso di mortalità medio pari al 29% (45) ed in Nigeria pari quasi al 35% (41). Questo sottolinea l’importanza del riconoscimento tempestivo, della prima valutazione e della gestione appropriata di una sospetta LM (139). In un ampio studio retrospettivo sugli outcomes di 324 pazienti in Australia, che sono stati trasportati in ambulanza e ammessi al reparto per LM, è stato solo grazie ad equipaggi delle ambulanze ben addestrati ad identificare i segni vitali fisiologici di una LM, che questi pazienti sono stati indirizzati al reparto per LM, dove per circa l’88% di essi è stata fatta diagnosi di LM ((75), vedi Riquadro 2.2). Generalmente, i tassi di mortalità negli Ospedali confermano l’importanza di un’assistenza sanitaria di qualità per la sopravvivenza delle PLM, e questi tassi potrebbero essere correlati al livello delle risorse generali di un Paese.
Costi associati alla lesione midollare I costi della LM – diretti ed indiretti – sono importanti per determinare l’impatto economici e sociali della LM. I costi diretti possono includere i servizi sanitari e la riabilitazione; i più costosi sono quelli riguardanti i trasporti, le diete speciali e l’assistenza personale. I costi indiretti, sia quelli economici che non, possono includere la perdita della produttività dovuta a morte prematura o alla disabilità, all’isolamento sociale e allo stress. Il costo della LM è influenzato in grande misura dai seguenti fattori: ■ La natura della lesione iniziale o le condizioni di salute conseguenti alla LM. Per le LMT, il costo dipende dal livello e dalla gravità della lesione (140,144), mentre per LMNT dipende dalla gravità della conseguenti condizione di salute (145,146).
Capitolo 2 Il quadro globale della lesione midollare
■ La tempestività della cura, in particolare il tempo trascorso tra il momento della lesione ed il primo intervento medico adeguato. ■ Il tempo trascorso in ospedale – includendo il primo ricovero (146) ed ogni ri-ospedalizzazione dovuta al fallimento della prevenzione o della gestione delle complicanze secondarie. I dati suggeriscono che non ci sono differenze di costo legate al sesso (147). ■ Costi medici diretti – includendo le carrozzine ed i ventilatori meccanici.
2. 3. 4. 5.
Bisogna prestare attenzione nel confrontare i dati sui costi fra i vari Paesi. Il confronto diretto fra Paesi sulle “stime dei costi della LM” è difficile. Vengono utilizzate differenti categorie di costi diretti ed indiretti e le stime dei costi si basano su tecniche statistiche differenti e su dati di qualità variabile. Anche all’interno di uno stesso Paese, le stime dei costi diretti dell’assistenza sanitaria variano a seconda delle fonti dei dati (148,150). È emerso un quadro generale sui costi della LM dai dati disponibili, ma non è possibile calcolare stime regionali o globali: 1. Il livello e la gravità della lesione hanno un’influenza importante sui costi, con
costi più elevati associati a lesioni midollari più alte (ad es. tetraplegia in confronto alla paraplegia) e a LM complete rispetto a quelle incomplete. I costi delle LMNT tendono ad essere più bassi rispetto a quelli delle LMT, in gran parte per l’età di insorgenza. I costi diretti sono più alti durante il primo anno dalla LM, per poi ridursi notevolmente nel tempo. I costi indiretti, come soprattutto la perdita di produttività, potrebbero superare i costi diretti. La maggior parte dei costi sono a carico delle PLM.
Questi punti vengono descritti di seguito più in dettaglio. 1. Il livello e la gravità della lesione hanno un’influenza importante sui costi (134,151,152). La tetraplegia è associata a costi più elevati della paraplegia (42,153,154). Dati provenienti dal Centro Statistico Nazionale Lesioni Midollari negli USA hanno stimato che nel 2013, il costo per una Persona che aveva subito un infortunio all’età di 25 anni è stato pari a 4,6 milioni di US$
Riquadro 2.2 Un’appropriata gestione pre-ospedaliera nel periodo immediatamente post-lesione riduce i decessi e le complicanze secondarie Fra il 2004 ed il 2008 fu condotto un ampio studio retrospettivo in Australia sull’outcome di 324 pazienti che sono stati trasportati in ambulanza e ammessi al Reparto per le lesioni midollari. La maggior parte di queste Persone, sulla scena dell’infortunio, avevano segni vitali fisiologici nei limiti della norma ma, visto il tipo di infortunio, furono trattati dall’equipaggio dell’ambulanza come potenziali PLM. Questo protocollo ha salvato molte vite, in quanto all’88% di questi pazienti è stata diagnosticata una LM, una volta ricoverati nel Reparto per LM. Il tempo medio impiegato per raggiungere il Reparto per LM, dopo la lesione, è stato al di sotto delle 12 ore. Invece, in caso di trasporto in un Centro Traumatologico Generale, ci sono volute più di 24 ore prima che il paziente venisse preso in cura da uno specialista in LM e queste Persone hanno avuto un rischio di sviluppare complicanze secondarie di 2,5 volte maggiore rispetto a quelli ammessi direttamente al Reparto per LM. Lo studio ha inoltre mostrato, in maniera significativa, che quando la lesione è stata causata da una caduta, i pazienti erano sempre anziani, ma spesso non veniva considerata la possibilità di una LM da parte dell’equipaggio delle ambulanze. Questo ha aumentato i trasferimenti fra strutture ospedaliere, così che meno della metà di questo gruppo ha raggiunto il Reparto per LM entro le 24 ore successive alla lesione e ha sofferto di un sostanziale aumento nel tasso di mortalità e di complicanze secondarie. Visto il crescente invecchiamento della popolazione e l’incremento nell’incidenza delle LM da cadute correlate all’età, lo studio suggerisce che lesioni da caduta negli anziani dovrebbero essere prudenzialmente considerate come potenziali lesioni midollari.
27
Prospettive Internazionali sulla lesione del midollo spinale
per una tetraplegia di livello alto, rispetto ai 2,3 milioni US$ per paraplegia. In Australia, i costi per tutta la vita dopo un infortunio, sono stati stimati in 5,0 milioni di dollari australiani per una Persona con paraplegia ed in 9,5 milioni per quella con una tetraplegia (154). Questo studio australiano ha confrontato anche i costi associati ad altre patologie neurologiche, come la demenza, la sclerosi multipla, la paralisi cerebrale infantile ed il disturbo bipolare, trovando che i costi associati ad una tetraplegia sono fra 2 e 20 volte superiori a quelli per le altre patologie (154). In termini di gravità, alcuni studi hanno trovato che i costi per una LM completa sono più elevati di quelli per una LM incompleta. Ad esempio, dati Canadesi sulla media dei costi diretti, che includevano il ricovero in ospedale, le prestazioni mediche, l’assistenza domiciliare e l’assistenza a lungo termine, hanno mostrato che i costi medi nel primo anno erano in media pari a $ 121.600 (dollari canadesi nel 2002) per una Persona con lesione midollare completa e a $ 42.100 per una Persona con lesione midollare incompleta. Nei successivi 5 anni, i costi annuali erano rispettivamente pari a $ 5400 e $ 2800 per una Persona con lesione midollare completa ed incompleta ((144), vedi Figura 2.11). 2. I costi di una LMNT tendono ad essere più bassi rispetto a quelli di una LMT, in gran parte per l’età di insorgenza. La LMNT generalmente colpisce le popolazioni più anziane, con costi indiretti inferiori per il resto della loro vita,
Figura 2.11 Costi sanitari diretti annuali per persona, a seconda del livello e della gravità di LM, per Persone che hanno subito un infortunio in Alberta, Canada, 1992–1994 (Dollari Canadesi nel 2002)
 Anno 1 150 900 Dollaro Canadese Anni 2–6
104 600
53 600
45 700 15 800 24 700
35 000 16 000
47 200
6 800
Tetraplegia Tetraplegia completa incompleta
Toracica completa
Toracica Lombare/ incompleta Cauda equina
Fonte (144)
sopratutto perché non fanno più parte della forza lavoro attiva. Fa eccezione a questo la spina bifida, non solo perché inizia nella prima infanzia, ma anche a causa dei costi elevati dei servizi necessari per lo sviluppo ed il comportamento della persona e per i servizi sanitari domiciliari (155–157).
Tabella 2.5 Spese medie annuali di TLM in base alla gravità della lesione Gravità della lesione Spese medie annuali (2013 US$) Primo anno Tetraplegia Alta (C1-C4) Tetraplegia Bassa (C5-C8) Paraplegia Incompletezza motoria ad ogni livello Fonte (153) 1 044 197 754 524 508 904 340 787 Ogni anno successivo 181 328 111 237 67 415 41 393
28
Capitolo 2 Il quadro globale della lesione midollare
3. I costi diretti sono più elevati nel primo anno dopo una LM e poi si riducono notevolmente nel tempo (134,151,152). In Tabella 2.5 sono mostrate le stime dei costi sanitari relativi al 2013, provenienti dal Database del Centro Statistico Nazionale per le Lesioni Midollari degli USA. I costi continuativi per gli ausili, le attrezzature e l’assistenza a lungo termine, come le residenze assistite, l’assistenza per alleviare le famiglie di sollievo, l’assistenza personale ed i servizi sociali di supporto, tendono ad essere elevati, anche dopo che gli elevati costi sanitari diretti iniziali iniziano a ridursi (154). La Figura 2.12 mostra questo andamento dei costi per la tetraplegia in Australia. 4. I costi indiretti potrebbero eccedere i costi diretti. Nonostante i costi diretti medici e di riabilitazione siano onerosi e continuino a crescere (158), i costi indiretti, soprattutto i costi associati alla perdita di produttività per tutta la vita, possono largamente superare tutte le spese dirette (159). Uno studio sui costi della fase acuta (per 6 settimane) in 34 PLM in Nigeria, ha mostrato una differenza di 6 volte tra i costi sanitari diretti medi (una media di US$ 239, che include assistenza infermieristica e medica, procedure operative, ricovero, medicinali e spese di laboratorio) ed i costi indiretti (US$ 1360, che include la somma dei guadagni persi ed il costo per la sostituzione e riparazione del nuovo veicolo) (42). Il costo totale delle prestazioni ammonta a più del 50% del reddito annuale del paziente. 5. La maggior parte dei costi sono a carico delle PLM. La Victorian Neurotrauma Initiative ha calcolato che il costo totale annuale della LM in Australia è stato pari a circa 2 miliardi di AUS$ (1,3 miliardi per la tetraplegia e 689,7 milioni per la paraplegia) ed il 40% del totale è stato pagato proprio dalle PLM. Il Governo Centrale ha coperto il 44% dei costi ed il Governo Federale un ulteriore 10% (154).
Figura 2.12 Costo diretto annuale medio, nel tempo, per tipo di costo, nella tetraplegia
 140 000 Spesa media annuale (Dollari Australiani) 120 000 100 000 80 000 60 000 40 000 20 000 0 1 2 3 4 5 6 Anni dopo la lesione Costi sanitari Attrezzature e modi che Assistenza a lungotermine
Fonte (144) © VNI, basati sui dati da TAC negli anni 2004–2008 Il Rapporto scritto da Access Economics Pty Limited per Victorian Neurotrauma Initiative, Giugno 2009 intitolato “Il costo economico della lesione midollare e della lesione cerebrale traumatica in Australia” citato in precedenza, non è una pubblicazione ufficiale dell’ OMS. Questa ed altre pubblicazioni sono disponibili gratuitamente sul sito www.tac.vic.gov.au.
Dati e prove sulla lesione midollare È importante migliorare la conoscenza sulle PLM e rafforzare le evidenze che sono alla base della prevenzione, del supporto e dell’assistenza alle PLM. Questo paragrafo tratta dei problemi e delle perplessità legate ai dati ed alle evidenze relativi alla LM, e l’Appendice Tecnica B fornisce una spiegazione ancora più dettagliata sui limiti dei dati. I dati sulle LM possono essere ottenuti da fonti d’informazione specifiche sulla LM o possono essere correlati a dati relativi alla disabilità 29
Prospettive Internazionali sulla lesione del midollo spinale
in generale, con collegamenti alle cause esterne di lesione. Le fonti, quindi il tipo di dati e lo standard/strumento per la raccolta delle informazioni, vengono discusse di seguito e descritte nella Tabella 2.6.
Fonti dei dati Contesti sanitari. Una grande varietà di contesti sanitari possono essere fonte di dati sulle LM, includendo le cartelle cliniche dei pazienti provenienti dai ricoveri ospedalieri, i servizi di ambulanza o i dipartimenti d’emergenza, le cliniche e i medici di famiglia. I dati dei vari contesti
sanitari sono rilevanti solo per la popolazione che fruisce di questi servizi e non sono rappresentativi dell’intera popolazione con LM del Paese. Registro centrale delle PLM. Alcuni Paesi ad alto reddito hanno creato un Registro centrale delle lesioni midollari, utilizzando criteri scientifici per la raccolta, la gestione e l’analisi dei dati sulla LM, ad esempio il Registro Lesioni Midollari Rick Hansen in Canada (vedi Riquadro 2.3), il Registro Australiano Lesioni Midollari (162) ed il Database sulla Lesione Midollare gestito dal Centro Statistico Nazionale sulle Lesioni Midollari negli USA (163,164). Questi Registri hanno vari gradi di rappresentatività. Al momento nessun
Tabella 2.6 Fonte, tipo di dati e standard/strumento per la raccolta delle informazioni su LM Fonte Contesti sanitari Tipo di dati Età dell’infortunio Sesso Lesione Livello neurologico e gravità della lesione (paraplegia, tetraplegia, completa, incompleta) Costi delle cure Età al momento dell’infortunio Sesso Razza, Etnia Occupazione Eziologia Livello neurologico e gravità della lesione (paraplegia, tetraplegia, completa, incompleta), dopo la dimissione Tipo di residenza ove la Persona viene inviata alla dimissione Durata del ricovero in ospedale Costi delle cure Cause di decesso Censimento Indagini sanitarie e sociali a livello nazionale Indagine nazionale sulla disabilità Standard/strumento per la raccolta delle informazioni ICD ASIA/ISCoS International SCI Data Sets SHA
Registro centrale
ICECI ASIA/ISCoS International SCI Data Sets SHA ICD
Indagini nazionali
Gruppo di Washington 6 Domande (solo Censimento) OMS Programma di Valutazione sulla Disabilità Indagine sul Modello di Disabilità dell’ OMS e della Banca Mondiale
Compagnie assicurative
Età al momento dell’infortunio Sesso Eziologia della lesione Livello neurologico e gravità della lesione (paraplegia, tetraplegia, completa, incompleta) dopo la dimissione Occupazione Costo dei danni
30
Capitolo 2 Il quadro globale della lesione midollare
Riquadro 2.3 Un esempio di registro della LM Il Registro delle lesioni midollari Rick Hansen è un database per tutto il Canada, dei pazienti ricoverati nei 31 principali Centri Traumatologici e di Riabilitazione delle varie Province. Al momento, i casi di LMNT e LMT incompleta (D) non vengono inclusi, visto che spesso vengono curati in Ospedali non inclusi nel Registro. Il Registro è stato istituito dal Governo Centrale Canadese e da quelli Provinciali, dai siti che partecipano al Registro e dalla Fondazione Rick Hansen. Altre fondazioni, che donano risorse, forniscono risorse consistenti e certe, che sono fondamentali per mantenere un Registro attivo. Ogni struttura partecipante recluta pazienti ed ottiene il loro consenso per la raccolta dei dati, che vengono poi salvati nella banca dati centrale, in formato anonimo. Sono raccolti un totale di 260 elementi, dalla fase pre-ospedaliera, a quella acuta e di riabilitazione in regime di ricovero a quella dopo la dimissione, insieme a fattori socio-demografici, all’anamnesi, a dettagli sull’infortunio, sulla diagnosi e sul tipo di intevento, alle menomazioni neurologiche, alle complicanze ed agli esiti riportati dai pazienti. I partecipanti vengono contattati dopo 1,2,5 e 10 anni dopo la dimissione e poi ogni 5 anni, per completare il questionario sui risultati. I dati raccolti sono in linea con gli “International Core Data Set” e con gli “International Standards for Neurological Classification of SCI” e collegati agli altri Registri per evitare duplicazioni. Il Registro ha migliorato l’assistenza sanitaria:
■■ migliorando la comparabilità dei risultati, con la standardizzazione delle valutazioni e includendo una codifica ■■ ■■ ■■ ■■ ■■ ■■ ■■ informatica nelle procedure sanitarie; identificando il fabbisogno del personale nel tempo; fornendo a personale e pazienti informazioni durante le valutazioni periodiche. Il Registro ha anche facilitato la ricerca clinica in quanto: identifica persone interessate a partecipare agli studi di ricerca; riduce il carico di responsabilità del rispondente fornendo le informazioni necessarie agli studi clinici; fornisce una valutazione di fattibilità per le strutture che vogliono partecipare agli studi clinici; mostra come i pazienti utilizzano le strutture del Sistema sanitario Canadese e le differenze nelle cure erogate e finanziate tra le diverse Province.
Fonti: (160,161).
Paese a basso o medio reddito possiede un Registro nazionale della LM. Indagini nazionali. I dati nazionali sulla disabilità sono desunti da censimenti o da indagini sulle condizioni di salute e le condizioni sociali della popolazione, tutti basati sulle auto-dichiarazioni. Sebbene queste indagini normalmente pongano domande sulla mobilità, se i dati non vengono distinti per menomazione o patologia, esse avranno un valore limitato per informazioni specifiche sulla LM. Esistono o sono in via di elaborazione diversi strumenti per supportare la raccolta nazionale dei dati. Questi includono i punti sviluppati dal Gruppo di Washington sulle Statistiche nella Disabilità, quelli presenti
nelle Indagini Sanitarie Mondiali dell’ OMS, e le questioni proposte nell’Indagine sul Modello di Disabilità, attualmente in corso, da parte dell’ OMS e della Banca Mondiale. Le Compagnie di assicurazione garantiscono una copertura assicurativa contro diversi rischi, come le cattive condizioni di salute, gli incidenti stradali, gli infortuni sul lavoro e negli sport. Gli assicuratori raccolgono e usano i dati statistici per stimare l’entità delle future richieste di risarcimento sulla base di un rischio calcolato, includendo, ove necessario, il numero dei nuovi casi di LM e quelli già esistenti. Questi dati vengono utilizzati come base per la definizione dei premi e potrebbero quindi essere difficili da ottenere. 31
Prospettive Internazionali sulla lesione del midollo spinale
Standard sull’informazione Vi sono tre principali standard per l’informazione sanitaria rilevanti per la LM: Lo standard più ampiamente utilizzato come strumento di diagnostica è l’ “International Classification of Diseases” (ICD) [Classificazione Internazionale delle Malattie], che può essere utilizzato per classificare le malattie ed altri problemi di salute per la sanità e per i registri dello stato civile, includendo i certficati di morte e gli health records, e per monitorare l’incidenza e la prevalenza delle malattie. In molti Paesi i registri basati sull’ ICD vengono anche utilizzati per prendere decisioni circa i rimborsi e l’allocazione delle risorse (165). L’ “International Classification of External Cause of Injury” (ICECI) [Classificazione Internazionale della Causa Esterna della Lesione ] viene utilizzata per descrivere, misurare e monitorare le circostanze in cui si verificano gli infortuni, includendo il meccanismo della lesione, gli oggetti o le sostanze che hanno prodotto la lesione, il luogo e l’attività svolta durante l’infortunio, il ruolo dei comportamenti umani, l’utilizzo di alcol o altre droghe psico-attive. Vi sono anche altri moduli, per raccogliere dati sugli infortuni causati da violenza, trasporti, luoghi, sport e lavoro. Il “System of Health Accounts” (SHA) [Contabilità del Sistema Sanitario] è una piattaforma standardizzata di lavoro per la raccolta internazionale di contabilità finanziaria della sanità che permette la comparabilità, organizzata per tipo di intervento, nelle realtà pubbliche e private (166). Vi sono anche tre standard specifici per la LM: L’ “International Standards for Neurological Classification of SCI” [Standard Internazionale per la Classificazione Neurologica della lesione midollare] realizzato dall’ American Spinal Injury Association (ASIA) [Associazione Americana Lesione Midollare]. Questo sistema standardizzato è stato creato per valutare 32
e classificare il livello neurologico e l’estensione della LM. Il sistema di classificazione contiene tre elementi: I. “ASIA Impairment Scale” (AIS da A a E) [Scala disabilità ASIA]; II. il punteggio motorio (basato sulla valutazione neurologica della forza muscolare); III. il punteggio delle sensibilità (basato sulla valutazione neurologica della sensibilità); Questo sistema di valutazione standardizzato è stato recentemente revisionato da ASIA e ISCoS (The International Spinal Cord Society) e fornisce dati affidabili per l’assistenza clinica e gli studi di ricerca. Gli “International Spinal Cord Injury (SCI) Data Sets” [Insieme di Dati Internazionali sulla lesione midollare] sono stati sviluppati dall’ ISCoS per facilitare il confronto tra tipo di lesione ed esiti dei pazienti, delle strutture e dei vari Paesi (171,172). I “Data Set” comprendono gli “International SCI Core Data Set” (173) e gli “International Spinal Cord Injury Non-traumatic Data Sets” (174). Questi sono i principali protocolli per la standardizzazione di dati epidemiologici di base, includendo l’eziologia della LM e la sua stima (175). E’ importante l’iniziativa dell’ ISCoS per cercare di standardizzare il sistema di rilevazione dell’andamento epidemiologico globale delle LM (176). Gli “ICF Core Sets for SCI” [Protocolli ICF per la lesioneta e Versione Ridotta) sono data sets internazionali utilizzabili nell’attività clinica e di rie midollare] (Versione Complcerca sulla LM (177). Nel 2010 sono stati sviluppati Core Sets per la gestione dell’assistenza nella fase post-acuta e cronica, utilizzando l’ “International Classification of Functioning, Disability and Health” (ICF) [Classificazione Internazionale del Funzionamento, della Disabilità e della Salute], per garantire ulteriori strumenti di confronto con i dati statistici di altre disabilità (177–179).
Capitolo 2 Il quadro globale della lesione midollare
Problemi e dubbi circa i dati Vista la scarsità di dati sulla LM, c’è una reale necessità di raccogliere più dati a livello mondiale. Inoltre c’è il bisogno di migliorare la qualità dei dati. Il paragrafo successivo descrive alcuni dei limiti usualmente riscontrati nella raccolta dei dati sulla LM.
Definizioni e standardizzazione dei dati Ci sono differenze nelle definizioni dei casi di LM e nei criteri di inclusione che influiscono sulla confrontabilità dei dati nei vari contesti, sia all’interno dei vari Paesi che fra di loro. Definizioni mediche generiche sono funzionali dal punto di vista clinico, ma non sono adeguate per l’epidemiologia, ad es. “La lesione midollare è il danno del midollo spinale che determina la perdita del controllo sensitivo e motorio”(180). La definizione clinica di LM utilizzata dai “Centers for Disease Control” (CDC) statunitensi [Centri per il Controllo delle Malattie] è la seguente – “una lesione traumatica acuta degli elementi neurali nel canale midollare, con conseguente deficit sensitivo, motorio, o disfunzione intestinale/ vescicale, di tipo temporaneo o permanente” – include casi traumatici in cui un evento esterno causa la lesione, oppure malattie o cause degenerative. Come tale sono escluse la discopatia intervertebrale, le lesioni vertebrali senza LM, le avulsioni della radici nervose e le lesioni delle radici nervose e dei nervi periferici esterni al canale midollare, il cancro, la mielopatia vascolare, ed altre patologie non-traumatiche del midollo spinale (181).
e d’emergenza non sono tenuti a segnalare i decessi secondo i codici ICD, o se sono oberati di lavoro durante le emergenze, queste informazioni andranno perse (55,184,185), abbassando in maniera artificiosa l’incidenza ed i tassi di mortalità (186). Anche nei Paesi con elevate risorse, può essere difficile ottenere informazioni affidabili per le stime di prevalenza ed incidenza. Sono pochi i Paesi nel mondo che hanno Registri per LM e quelli esistenti sono incompleti. Anche nei Paesi in cui si hanno statistiche affidabili sulla LM, i dati tendono a concentrarsi sulla LMT, con una conseguente significativa sottostima dei casi di LMNT (89). Un registro per le LMNT, come per LMT , richiederebbe molto tempo, sarebbe costoso e poco pratico visto che le Persone con LMNT – a causa delle diverse eziologie – vengono curate e riabilitate in diversi contesti sanitari e spesso non ricevono cure in Centri di riabilitazione specializzati in LM (88).
Altri problemi Gli studi hanno svelato diversi altri problemi legati ai dati ed alle evidenze sulle LM. Di seguito ne vengono riportati alcuni. ■ L’archiviazione delle cartelle cliniche, con informazioni mancanti o scorrette nelle singole cartelle . Ad esempio, l’errata codifica ICD può causare una sovrastima dei casi di LM, se vengono inclusi per sbaglio i casi frattura o contusione della colonna vertebrale senza sintomi neurologici (20). ■ La maggior parte dei dati di incidenza e di prevalenza, provengono da studi di singoli Centri ospedalieri, che potrebbero non essere generalizzabili al resto del Paese. ■ Adeguatezza degli strumenti. L’ICD-10 non definisce specificatamente la LM, ma utilizza vari codici per identificare le fratture, le lesioni traumatiche, le lussazioni vertebrali e le lesioni complete ed incomplete. Nella pratica, i dati raccolti utilizzando questi codici
Dati sottostimati La sottostima delle LM e dei decessi causati dalla LM è un problema importante nei Paesi a basso e medio reddito (130,182,183). La LMT, come la maggior parte dei traumi più gravi, ha un tasso di mortalità elevato. Se i Centri Traumatologici
33
Prospettive Internazionali sulla lesione del midollo spinale
■ ■ ■ ■
sono inattendibili ai fini della ricerca epidemiologica (187). Uso incoerente della terminologia, ad es. nella letteratura sulla spina bifida. Campioni statistici di dimensioni troppo piccole. Validità scientifica dei metodi utilizzati per determinare l’incidenza e la prevalenza. Scarsità di dati sulle cause di LM
Migliorare la confrontabilità attraverso l’utilizzo di standard internazionali per la raccolta dei dati L’ “International Standards for Neurological Classification of Spinal Cord Injury” [Standard Internazionali per la Classificazione Neurologica della Lesione Midollare] insieme all’ “International Classification of External Cause of Injury” (ICECI) [Classificazione Internazionale della Causa Esterna della Lesione ] dell’Organizzazione Mondiale della Sanità ed all’ “International Classification of Functioning, Disability and Health” (ICF) [Classificazione Internazionale del Funzionamento, della Disabilità e della Salute], dovrebbero essere utilizzati costantemente per creare una struttura universale per la raccolta di tutti i dati sulla salute e sulla disabilità. Gli “International SCI Data Sets”, disponibili gratuitamente nel sito di ISCoS, contribuiscono ulteriormente alla confrontabilità dei dati sulle LM. I Paesi possono: ■ adottare formalmente gli standard ICECI e ICF, come essenziali per la raccolta di tutti i dati sanitari nazionali; ■ assicurare che tutti i dati sulle LM vengano raccolti utilizzando la terminologia ICECI ed il modello di disabilità ICF; ■ assicurare che tutti i dati sulle LM vengano riportati utilizzando almeno gli “International SCI Data Sets”.
Conclusioni e raccomandazioni Questo capitolo fornisce informazioni sull’incidenza, sulla prevalenza, sull’andamento e sui costi della LM, utilizzando i migliori dati disponibili di tutto il mondo. Le conclusioni sono dubbie, data la qualità e la scarsità dei dati di alcune aree del mondo. Dati e prove affidabili sono essenziali per descrivere il numero delle PLM e l’impatto sulle loro vite, per definire le cause, per sviluppare e valutare gli interventi, per fornire informazioni ai politici ed a coloro che devono decidere, e per la sensibilizzazione dell’opinione pubblica. Senza informazioni attendibili non si possono determinare, in maniera razionale e soddisfacente, le priorità per la prevenzione, per l’assistenza medica e sociale. Vi è un bisogno generale di dati sulle LM, che siano più certi e affidabili, più confrontabili e globali e che possano essere utilizzati per la ricerca, per l’assistenza clinica e per le politiche sanitarie e, in particolare, per essere in grado di includere a pieno la popolazione con LM nel monitoraggio dell’implementazione dei provvedimanti della CRPD in ogni Paese . In quest’ottica, le seguenti raccomandazioni possono contribuire ad accrescere la disponibilità e la qualità dei dati su LM.
Migliorare le statistiche nazionali sulla lesione midollare Il miglior modo di raccogliere dati sulle LM è attraverso un registro delle LM che riunisce i dati raccolti direttamente dagli ospedali e da altri centri di assistenza sanitaria salvandoli in una banca dati, gestita correttamente da un ente governativo, come il NSCISC negli Stati Uniti. I registri forniscono dati longitudinali essenziali ad identificare gli andamenti dell’ incidenza, che sono importanti per i programmi di prevenzione
34
Capitolo 2 Il quadro globale della lesione midollare
e per le altre politiche di intervento sulle LM e per i bisogni delle PLM. Nel caso in cui il registro sulle LM non esistesse, si possono utilizzare le seguenti strategie per migliorare la raccolta dei dati in maniera rilevante. ■ Raccogliere informazioni sulle LM comparabili a livello internazionale attraverso i sistemi nazionali di raccolta dei dati sanitari e sulla disabilità, assicurandosi che i dati possano essere disaggregati in categorie standardizzate , rilevanti per l’analisi dell’ andamento dell’incidenza, in particolare almeno per sesso, età ed eziologia. ■ Rendere noti i dati disponibili sulle LM nei rapporti annuali pubblicati su Internet in modo che possano essere facilmente ricercati e trovati. ■ Incoraggiare e dare supporto agli ospedali e ad altri centri di assistenza sanitaria a raccogliere dati sulle LM, con spese minime aggiuntive, attraverso il salvataggio appropriato delle cartelle cliniche e l’utilizzo di modelli standard basati sui dati internazionali. ■ Includere domande rilevanti sulle LM nelle indagini sulle condizioni di salute e disabilità delle popolazioni, in particolare nei censimenti, nelle indagini nazionali sulle famiglie e sulla salute e nelle indagini sociali ed economiche in generale. ■ Raccogliere dati specifici sulle LM attraverso indagini mirate dopo disastri naturali, come i terremoti. ■ Utilizzare le risorse di ISCoS e di altre organizzazioni professionali dedicate alle LM, per analizzare la possibilità di sviluppare un metodo standardizzato per classificare le LMNT ed un registro prospettico sulle LMT e sulle LMNT.
Incoraggiare e migliorare la ricerca sulla lesione midollare Per avere dati significativi provenienti dal proprio territorio, i Paesi di tutte le Aree (geografiche) devono incoraggiare e cercare di migliorare la qualità della ricerca sulle LM, includendo soprattutto studi longitudinali e di coorte. ■ I temi fondamentali della LM dovrebbero essere inclusi nei programmi di studio dei medici e dei professionisti del settore sanitario per aumentare la conoscenza sulla LM e per incoraggiare i giovani ricercatori in ambito medico a tenere in considerazione la ricerca sulla lesione midollare. ■ Si potrebbero incoraggiare i ricercatori a collaborare con le Agenzie che si occupano dei programmi per la prevenzione, comunicando strategie di prevenzione attraverso i dati di incidenza, coinvolgendoli nel monitoraggio e nella valutazione delle campagne per la prevenzione. ■ Si dovrebbe sviluppare una piattaforma globale che identifichi e standardizzi i costi diretti ed indiretti delle LM. Questi dati dovrebbero poi essere inseriti nei sistemi per la raccolta dei dati amministrativi e nazionali, per permettere una comprensione migliore dei costi sociali legati alla LM. ■ Coinvolgere le persone direttamente colpite dalla LM per definire le domande da porre nelle indagini e nelle altre modalità di raccolta dati, così da raccogliere elementi sull’esperienza di vita con una LM. I dati così raccolti possono poi essere integrati ai dati sulle LM già esistenti. ■ La ricerca sulla LMNT dovrebbe essere supportata, per aumentare le evidenze sull’incidenza, sui tassi di sopravvivenza, su prevalenza, eziologia e strategie di gestione sanitaria.
35
Prospettive Internazionali sulla lesione del midollo spinale
Referenze 1. 2. 3. 4. 5. 6. 7. 8. 9. Noonan VK et al. Incidence and prevalence of spinal cord injury in Canada: a national perspective. Neuroepidemiology, 2012, 38:219-226. doi: http://dx.doi.org/10.1159/000336014 PMID:22555590 Knútsdóttir S et al. Epidemiology of traumatic spinal cord injuries in Iceland from 1975 to 2009. Spinal Cord, 2012, 50:123-126. doi: http://dx.doi.org/10.1038/sc.2011.105 PMID:21946442 Hagen EM et al. A 50-year follow-up of the incidence of traumatic spinal cord injuries in western Norway. Spinal Cord, 2010, 48:313-318. doi: http://dx.doi.org/10.1038/sc.2009.133 PMID:19823192 Rahimi-Movaghar V et al. Prevalence of spinal cord injury in Tehran, Iran. The Journal of Spinal Cord Medicine, 2009, 32:428-431. PMID:19777865 Dahlberg A et al. Prevalence of spinal cord injury in Helsinki. Spinal Cord, 2005, 43:47-50. doi: http://dx.doi.org/10.1038/ sj.sc.3101616 PMID:15520842 O’Connor PJ. Prevalence of spinal cord injury in Australia. Spinal Cord, 2005, 43:42-46. doi: http://dx.doi.org/10.1038/sj.sc.3101666 PMID:15326472 New PW et al. Prevalence of non-traumatic spinal cord injury in Victoria, Australia. Spinal Cord, 2013, 51:99-102. doi: http://dx.doi. org/10.1038/sc.2012.61 PMID:22665222 Ronen J et al. Survival after nontraumatic spinal cord lesions in Israel. Archives of Physical Medicine and Rehabilitation, 2004, 85:1499-1502. doi: http://dx.doi.org/10.1016/j.apmr.2003.11.015 PMID:15375824 Tuğcu I et al. Epidemiologic data of the patients with spinal cord injury: seven years’ experience of a single center. Ulusal Travma Ve Acil Cerrahi Dergisi = Ulusal Travma Ve Acil Cerrahi Dergisi = Turkish Journal of Trauma & Emergency Surgery; TJTES, 2011, 17:533538. doi: http://dx.doi.org/10.5505/tjtes.2011.95676 PMID:22290007 Costacurta MLG et al. Epidemiological profile of a pediatric population with acquired spinal cord injury from AACD: Sao Paulo/ Brazil. Spinal Cord, 2010, 48:118-121. doi: http://dx.doi.org/10.1038/sc.2009.130 PMID:19806161 Garshick E et al. A prospective assessment of mortality in chronic spinal cord injury. Spinal Cord, 2005, 43:408-416. doi: http:// dx.doi.org/10.1038/sj.sc.3101729 PMID:15711609 McCammon JR, Ethans K. Spinal cord injury in Manitoba: a provincial epidemiological study. The Journal of Spinal Cord Medicine, 2011, 34:6-10. doi: http://dx.doi.org/10.1179/107902610X12923394765733 PMID:21528620 Sabre L et al. High incidence of traumatic spinal cord injury in Estonia. Spinal Cord, 2012, 50:755-759. doi: http://dx.doi. org/10.1038/sc.2012.54 PMID:22565551 Pérez K et al. Incidence trends of traumatic spinal cord injury and traumatic brain injury in Spain, 2000–2009. Accident; Analysis and Prevention, 2012, 46:37-44. doi: http://dx.doi.org/10.1016/j.aap.2011.12.004 PMID:22310041 Albert T et al. Rehabilitation of spinal cord injury in France: a nationwide multicentre study of incidence and regional disparities. Spinal Cord, 2005, 43:357-365. doi: http://dx.doi.org/10.1038/sj.sc.3101717 PMID:15741980 O’Connor P. Incidence and patterns of spinal cord injury in Australia. Accident; Analysis and Prevention, 2002, 34:405-415. doi: http://dx.doi.org/10.1016/S0001-4575(01)00036-7 PMID:12067103 Ahoniemi E et al. Incidence of traumatic spinal cord injuries in Finland over a 30-year period. Spinal Cord, 2008, 46:781-784. doi: http://dx.doi.org/10.1038/sc.2008.53 PMID:18542095 O’Connor RJ, Murray PC. Review of spinal cord injuries in Ireland. Spinal Cord, 2006, 44:445-448. PMID:16304563 Quinones M et al. Traumatic spinal cord in Qatar: an epidemiological study. The Middle East Journal of Emergency Medicine, 2002, 2:1-5. van Asbeck FW, Post MW, Pangalila RF. An epidemiological description of spinal cord injuries in the Netherlands in 1994. Spinal Cord, 2000, 38:420-424. doi: http://dx.doi.org/10.1038/sj.sc.3101003 PMID:10962602 Li J et al. The epidemiological survey of acute traumatic spinal cord injury (ATSCI) of 2002 in Beijing municipality. Spinal Cord, 2011, 49:777-782. doi: http://dx.doi.org/10.1038/sc.2011.8 PMID:21383758 Ning GZ et al. Epidemiology of traumatic spinal cord injury in Tianjin, China. Spinal Cord, 2011, 49:386-390. doi: http://dx.doi. org/10.1038/sc.2010.130 PMID:20921958 Lieutaud T, Ndiaye A, Laumon B, Chiron M. Spinal cord injuries sustained in road crashes are not on the decrease in France: A study based on epidemiological trends. Journal of Neurotrauma, 2012, 29:479-487. Augutis M, Levi R. Pediatric spinal cord injury in Sweden: incidence, etiology and outcome. Spinal Cord, 2003, 41:328-336. doi: http://dx.doi.org/10.1038/sj.sc.3101478 PMID:12746739 Puisto V et al. Incidence of spinal and spinal cord injuries and their surgical treatment in children and adolescents: a populationbased study. Spine, 2010, 35:104-107. doi: http://dx.doi.org/10.1097/BRS.0b013e3181c64423 PMID:20042961
10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25.
36
Capitolo 2 Il quadro globale della lesione midollare
26. Divanoglou A, Levi R. Incidence of traumatic spinal cord injury in Thessaloniki, Greece and Stockholm, Sweden: a prospective population-based study. Spinal Cord, 2009, 47:796-801. doi: http://dx.doi.org/10.1038/sc.2009.28 PMID:19350044 27. DeVivo MJ, Vogel LC. Epidemiology of spinal cord injury in children and adolescents. The Journal of Spinal Cord Medicine, 2004, 27:S4-S10. PMID:15503696 28. Vogel LC, Betz RR, Mulcahey MJ. Spinal cord injuries in children and adolescents. Handbook of Clinical Neurology, 2012, 109:131148. doi: http://dx.doi.org/10.1016/B978-0-444-52137-8.00008-5 PMID:23098710 29. Burke DA et al. Incidence rates and populations at risk for spinal cord injury: a regional study. Spinal Cord, 2001, 39:274-278. doi: http://dx.doi.org/10.1038/sj.sc.3101158 PMID:11438844 30. Lenehan B et al. The epidemiology of traumatic spinal cord injury in British Columbia, Canada. Spine, 2012, 37:321-329. doi: http:// dx.doi.org/10.1097/BRS.0b013e31822e5ff8 PMID:22337075 31. Surkin J et al. Spinal cord injury in Mississippi: findings and evaluation, 1992–1994. Spine , 2000, 25:716-721. doi: http://dx.doi. org/10.1097/00007632-200003150-00011 PMID:10752104 32. Pickett GE et al. Epidemiology of traumatic spinal cord injury in Canada. Spine, 2006, 31:799-805. doi: http://dx.doi. org/10.1097/01.brs.0000207258.80129.03 PMID:16582854 33. Yang NP et al. The incidence and characterisation of hospitalised acute spinal trauma in Taiwan – a population-based study. Injury, 2008, 39:443-450. doi: http://dx.doi.org/10.1016/j.injury.2007.12.007 PMID:18321510 34. Middleton JW et al. Life expectancy after spinal cord injury: a 50-year study. Spinal Cord, 2012, 50:803-811. doi: http://dx.doi. org/10.1038/sc.2012.55 PMID:22584284 35. National Spinal Cord Injury Statistical Center. Complete Public Version of the 2011 Annual Statistical Report for the Spinal Cord Injury Model System. Birmingham, Alabama, 2011. 36. Hagen EM, Eide GE, Elgen I. Traumatic spinal cord injury among children and adolescents: a cohort study in western Norway. Spinal Cord, 2011, 49:981-985. doi: http://dx.doi.org/10.1038/sc.2011.42 PMID:21556012 37. Vitale MG et al. Epidemiology of pediatric spinal cord injury in the United States, years 1997 and 2000. Journal of Pediatric Orthopedics, 2006, 26:745-749. doi: http://dx.doi.org/10.1097/01.bpo.0000235400.49536.83 PMID:17065938 38. Olasode BJ et al. Traumatic spinal cord injuries in Ile-Ife, Nigeria, and its environs. Tropical Doctor, 2006, 36:181-182. doi: http:// dx.doi.org/10.1258/004947506777978136 PMID:16884634 39. Umaru H, Ahidjo A. Pattern of spinal cord injury in Maiduguri, North Eastern Nigeria. Nigerian Journal of Medicine, 2005, 14:276278. PMID:16350696 40. Solagberu BA. Spinal cord injuries in Ilorin, Nigeria. West African Journal of Medicine, 2002, 21:230-232. PMID:12744575 41. Nwadinigwe CU, Iloabuchi TC, Nwabude IA. Traumatic spinal cord injuries (SCI): a study of 104 cases. Nigerian Journal of Medicine, 2004, 13:161-165. PMID:15293837 42. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:11341137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 43. Obalum DC et al. Profile of spinal injuries in Lagos, Nigeria. Spinal Cord, 2009, 47:134-137. doi: http://dx.doi.org/10.1038/sc.2008.93 PMID:18679400 44. Fielingsdorf K, Dunn RN. Cervical spine injury outcome - a review of 101 cases treated in a tertiary referral unit. South African Medical Journal, 2007, 97:203-207. PMID:17440669 45. Gosselin RA, Coppotelli C. A follow-up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 46. Dryden DM et al. Utilization of health services following spinal cord injury: a 6-year follow-up study. Spinal Cord, 2004, 42:513525. doi: http://dx.doi.org/10.1038/sj.sc.3101629 PMID:15249928 47. Pirouzmand F. Epidemiological trends of spine and spinal cord injuries in the largest Canadian adult trauma center from 1986 to 2006. Journal of Neurosurgery. Spine, 2010, 12:131-140. doi: http://dx.doi.org/10.3171/2009.9.SPINE0943 PMID:20121346 48. Dryden DM et al. The epidemiology of traumatic spinal cord injury in Alberta, Canada. The Canadian Journal of Neurological Sciences, 2003, 30:113-121. PMID:12774950 49. Neumann CR, Brasil AV, Albers F. Risk factors for mortality in traumatic cervical spinal cord injury: Brazilian data. The Journal of Trauma, 2009, 67:67-70. doi: http://dx.doi.org/10.1097/TA.0b013e3181aa63f3 PMID:19590310 50. Leal-Filho MB et al. Spinal cord injury: epidemiological study of 386 cases with emphasis on those patients admitted more than four hours after the trauma. Arquivos de Neuro-Psiquiatria, 2008, 66:365-368. doi: http://dx.doi.org/10.1590/S0004282X2008000300016 PMID:18641873 51. Brito LMO et al. Epidemiological evaluation of victims of spinal cord injury. Revista do Collégio Brasileiro de Cirugöes, 2011, 38:304309. doi: http://dx.doi.org/10.1590/S0100-69912011000500004 PMID:22124640 52. Collazo Álvarez H et al. Traumatismo raquimedular toracico y lumbar. Rev Cubana Ortop Traumatol, 2002, 16:53-60.
37
Prospettive Internazionali sulla lesione del midollo spinale
53. Alshahri SS et al. Traumatic spinal cord injury in Saudi Arabia: an epidemiological estimate from Riyadh. Spinal Cord, 2012, 50:882884. PMID:22777491 54. Raibulet T et al. Spinal cord injury patients in the physical medicine and rehabilitation hospital, Kuwait – a nine-year retrospective study. Kuwait Medical Journal, 2001, 33:211-215. 55. Rathore FA et al. Spinal cord injury management and rehabilitation: highlights and shortcomings from the 2005 earthquake in Pakistan. Archives of Physical Medicine and Rehabilitation, 2008, 89:579-585. doi: http://dx.doi.org/10.1016/j.apmr.2007.09.027 PMID:18295642 56. Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord, 2003, 41:303-309. doi: http://dx.doi. org/10.1038/sj.sc.3101443 PMID:12714994 57. Lidal IB et al. Mortality after spinal cord injury in Norway. Journal of Rehabilitation Medicine, 2007, 39:145-151. doi: http://dx.doi. org/10.2340/16501977-0017 PMID:17351697 58. Post MWM et al. Duration and functional outcome of spinal cord injury rehabilitation in the Netherlands. Journal of Rehabilitation Research and Development, 2005, 42 Suppl I:75-85. doi: http://dx.doi.org/10.1682/JRRD.2004.10.0133 PMID:16195965 59. Scivoletto G et al. Traumatic and non-traumatic spinal cord lesions: an Italian comparison of neurological and functional outcomes. Spinal Cord, 2011, 49:391-396. doi: http://dx.doi.org/10.1038/sc.2010.85 PMID:20603629 60. Pagliacci MC et al. An Italian survey of traumatic spinal cord injury. The Gruppo Italiano Studio Epidemiologico Mielolesioni Study. Archives of Physical Medicine and Rehabilitation, 2003, 84:1266-1275. doi: http://dx.doi.org/10.1016/S0003-9993(03)00234-X PMID:13680560 61. Catz A et al. Survival following spinal cord injury in Israel. Spinal Cord, 2002, 40:595-598. doi: http://dx.doi.org/10.1038/ sj.sc.3101391 PMID:12411967 62. Cosar SN et al. Demographic characteristics after traumatic and non-traumatic spinal cord injury: a retrospective comparison study. Spinal Cord, 2010, 48:862-866. doi: http://dx.doi.org/10.1038/sc.2010.49 PMID:20440301 63. Gur A et al. Characteristics of traumatic spinal cord injuries in south-eastern Anatolia, Turkey: a comparative approach to 10 years’ experience. International Journal of Rehabilitation Research. Internationale Zeitschrift fur Rehabilitationsforschung. Revue Internationale de Recherches de Readaptation, 2005, 28:57-62. doi: http://dx.doi.org/10.1097/00004356-200503000-00008 PMID:15729098 64. Ones K et al. Comparison of functional results in non-traumatic and traumatic spinal cord injury. Disability and Rehabilitation, 2007, 29:1185-1191. doi: http://dx.doi.org/10.1080/09638280600902661 PMID:17653992 65. Karacan I et al. Traumatic spinal cord injuries in Turkey: a nation-wide epidemiological study. Spinal Cord, 2000, 38:697-701. doi: http://dx.doi.org/10.1038/sj.sc.3101064 PMID:11114778 66. Seguin P et al. Impact of age on mortality in patients with acute traumatic spinal cord injury requiring intensive care. Annales Francaises d’Anesthesie et de Reanimation, 2012, 31:196-202. doi: http://dx.doi.org/10.1016/j.annfar.2011.10.019 PMID:22204755 67. Van Den Berg M et al. Incidence of traumatic spinal cord injury in Aragon, Spain (1972–2008). Journal of Neurotrauma, 2011, 28:469-477. doi: http://dx.doi.org/10.1089/neu.2010.1608 PMID:21190391 68. Islam MS, Hafez MA, Akter M. Characterization of spinal cord lesion in patients attending a specialized rehabilitation center in Bangladesh. Spinal Cord, 2011, 49:783-786. doi: http://dx.doi.org/10.1038/sc.2011.36 PMID:21502957 69. Singh R et al. Traumatic spinal cord injuries in Haryana: An epidemiological study. Indian Journal of Community Medicine, 2003, 28:184-186. 70. Pandey V et al. Care of post-traumatic spinal cord injury patients in India: an analysis. Indian Journal of Orthopaedics, 2007, 41:295299. doi: http://dx.doi.org/10.4103/0019-5413.36990 PMID:21139781 71. Chhabra HS, Arora M. Demographic profile of traumatic spinal cord injuries admitted at Indian Spinal Injuries Centre with special emphasis on mode of injury: a retrospective study. Spinal Cord, 2012, 50:745-754. doi: http://dx.doi.org/10.1038/sc.2012.45 PMID:22584285 72. Kuptniratsaikul V. Epidemiology of spinal cord injuries: a study in the spinal unit, Siriraj Hospital, Thailand. Journal of the Medical Association of Thailand, 2003, 86:1116-1121. PMID:14971518 73. Lee BB et al. The global map for traumatic spinal cord injury epidemiology: update 2011, global incidence rate. Spinal Cord, 2013,In press PMID:23439068 74. Yang JY et al. Epidemiology of the spinal cord and cauda equine injury in Korea-multicenter study. J Korean Soc Spine Surg, 2011, 18:83-90. doi: http://dx.doi.org/10.4184/jkss.2011.18.3.83 75. Middleton PM. The pre-hospital epidemiology and management of spinal cord injuries in New South Wales: 2004–2008. Injury, 2012, 43:480-485. doi: http://dx.doi.org/10.1016/j.injury.2011.12.010 PMID:22244002
38
Capitolo 2 Il quadro globale della lesione midollare
76. Chan SCC, Chan APS. Rehabilitation outcomes following traumatic spinal cord injury in a tertiary spinal cord injury centre: a comparison with an international standard. Spinal Cord, 2005, 43:489-498. doi: http://dx.doi.org/10.1038/ sj.sc.3101743 PMID:15824758 77. Wu JC et al. Effects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of Neurotrauma, 2012, 29:889-897. doi: http://dx.doi. org/10.1089/neu.2011.1777 PMID:21510819 78. Wang HF et al. Epidemiological features of traumatic spinal cord injury in Anhui Province, China. Spinal Cord, 2013, 51:20-22. doi: http://dx.doi.org/10.1038/sc.2012.92 PMID:22945750 79. Wu Q et al. Epidemiology of traumatic cervical spinal cord injury in Tianjin, China. Spinal Cord, 2012, 50:740-744. doi: http://dx.doi. org/10.1038/sc.2012.42 PMID:22525311 80. Feng HY et al. Epidemiological profile of 239 traumatic spinal cord injury cases over a period of 12 years in Tiajin, China. The Journal of Spinal Cord Medicine, 2011, 34:388-394. www.maneypublishing.com/journals/scm and www.ingentaconnect.com/ content/maney/scm doi: http://dx.doi.org/10.1179/2045772311Y.0000000017 PMID:21903012 81. Lakhey S et al. Aetioepidemiological profile of spinal injury patients in eastern Nepal. Tropical Doctor, 2005, 35:231-233. doi: http://dx.doi.org/10.1258/004947505774938756 PMID:16354480 82. DeVivo MJ, Chen Y. Trends in new injuries prevalent cases, and aging with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:332-338. doi: http://dx.doi.org/10.1016/j.apmr.2010.08.031 PMID:21353817 83. Lee JH et al. Characteristics of pediatric-onset spinal cord injury. Pediatrics International, 2009, 51:254-257. doi: http://dx.doi. org/10.1111/j.1442-200X.2008.02684.x PMID:19405927 84. Lhéritier K et al. Survival of tetraplegic spinal cord injured persons after the first admission of a rehabilitation center and prognosis factors: a multicentre study of 697 subjects in French centers. Revue d’Epidemiologie et de Sante Publique, 2001, 49:449458. PMID:11845094 85. Celani MG et al. Spinal cord injury in Italy: a multicentre retrospective study. Archives of Physical Medicine and Rehabilitation, 2001, 82:589-596. doi: http://dx.doi.org/10.1053/apmr.2001.21948 PMID:11346833 86. Martin BW, Dykes E, Lecky FE. Patterns and risks in spinal trauma. Archives of Disease in Childhood, 2004, 89:860-865. doi: http:// dx.doi.org/10.1136/adc.2003.029223 PMID:15321867 87. New PW, Cripps RA, Bonne Lee B. Global maps of non-traumatic spinal cord injury epidemiology: towards a living data repository. Spinal Cord, 2013, in print http://dx.doi.org/10.1038/sc.2012.165 doi: http://dx.doi.org/10.1038/sc.2012.165 PMID:23318556 88. New PW. Non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? Australian Health Review, 2006, 30:353-361. doi: http://dx.doi.org/10.1071/AH060353 PMID:16879094 89. New PW, Sundararajan V. Incidence of non-traumatic spinal cord injury in Victoria, Australia: a populationbased study and literature review. Spinal Cord, 2008, 46:406-411. doi: http://dx.doi.org/10.1038/sj.sc.3102152 PMID:18071356 90. van den Berg ME et al. Incidence of nontraumatic spinal cord injury: a Spanish cohort study (1972–2008). Archives of Physical Medicine and Rehabilitation, 2012, 93:325-331. doi: http://dx.doi.org/10.1016/j.apmr.2011.08.027 PMID:22289245 91. Centers for Disease Control and Prevention. Racial/ethnic differences in the birth prevalence of spina bifida – United States, 1995. MMWR Morb Mortal Wkly, 2009. Rep, 2005, 57:1409-1413. 92. Tarqui Mamani C et al. Incidencia de los defectos del tubo neural en el Instituto Nacional Materno Perinatal de Lima, Incidence of neural tube defects in the National Maternal-Perinatal Institute of Lima. Rev Chil Salud Pública, 2009, 13:82-89. 93. Msamati BC, Igbigbi PS, Chisi JE. The incidence of cleft lip, cleft palate, hydrocephalus and spina bifida at Queen Elizabeth Central Hospital, Blantyre, Malawi. The Central African Journal of Medicine, 2000, 46:292-296. PMID:12002118 94. Murshid WR. Spina bifida in Saudi Arabia: is consanguinity among the parents a risk factor? Pediatric Neurosurgery, 2000, 32:10-12. doi: http://dx.doi.org/10.1159/000028890 PMID:10765132 95. Onrat ST et al. Incidence of neural tube defects in Afyonkarahisar, Western Turkey. Genetics and Molecular Research, 2009, 8:154161. doi: http://dx.doi.org/10.4238/vol8-1gmr552 PMID:19283682 96. Orioli IM et al. Effects of folic acid fortification on spina bifida prevalence in Brazil. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:831-835. doi: http://dx.doi.org/10.1002/bdra.20830 PMID:21630426 97. Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 98. Ahuka OL et al. Congenital malformations in the North-Eastern Democratic Republic of Congo during Civil War. East African Medical Journal, 2006, 83:95-99. doi: http://dx.doi.org/10.4314/eamj.v83i2.9395 PMID:16708881
39
Prospettive Internazionali sulla lesione del midollo spinale
99. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 100. Amini H et al. The Swedish Birth Defects Registry: ascertainment and incidence of spina bifida and cleft lip/palate. Acta Obstetricia et Gynecologica Scandinavica, 2009, 88:654-659. doi: http://dx.doi.org/10.1080/00016340902934696 PMID:19412801 101. Barboza Argüello ML, Umaña Solís LM. Impact of the fortification of food with folic acid on neural tube defects in Costa Rica. Revista Panamericana de Salud Pública, 2011, 30:1-6. PMID:22159644 102. Sípek A, Gregor V, Horacek J. Birth defects in the Czech Republic in the period 1961–2005 – mean incidences. Ceska Gynekologie, 2007, 72:185-191. PMID:17616072 103. Hernández-Herrera RJ, Alcala-Galvan LG, Flores-Santos R. Neural defect prevalence in 248,352 consecutive newborns. Revista Medica del Instituto Mexicano del Seguro Social, 2008, 46:201-204. PMID:19133193 104. Boyd PA et al. Monitoring the prenatal detection of structural fetal congenital anomalies in England and Wales: register-based study. Journal of Medical Screening, 2011, 18:2-7. doi: http://dx.doi.org/10.1258/jms.2011.010139 PMID:21536809 105. De Wals PF et al. Reduction in neural-tube defects after folic acid fortification in Canada. The New England Journal of Medicine, 2007, 357:135-142. doi: http://dx.doi.org/10.1056/NEJMoa067103 PMID:17625125 106. López-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi. org/10.1002/ajmg.a.33479 PMID:20814949 107. Njamnshi AK et al. Neural tube defects are rare among black Americans but not in sub-Saharan black Africans: the case of Yaounde – Cameroon. Journal of the Neurological Sciences, 2008, 270:13-17. doi: http://dx.doi.org/10.1016/j. jns.2008.01.010 PMID:18295800 108. Owen TJ, Halliday JL, Sone CA. Neural tube defects in Victoria, Australia: potential contributing factors and public health implications. Australian and New Zealand Journal of Public Health, 2000, 24:584-589. doi: http://dx.doi.org/10.1111/j.1467842X.2000.tb00521.x PMID:11215005 109. Sayed AR et al. Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2008, 82:211-216. doi: http://dx.doi.org/10.1002/ bdra.20442 PMID:18338391 110. Golalipour MJ et al. Epidemiology of neural tube defects in northern Iran, 1998–2003. Eastern Mediterranean Health Journal, 2007, 13:560-566. PMID:17687828 111. Farhud D, Hadavi V, Sadighi H. Epidemiology of neural tube defects in the world and Iran. Iranian Journal of Public Health, 2000, 29:83-90. 112. García López E et al. Prevalence of neural tube defects in Asturias (Spain): impact of prenatal diagnosis. Gaceta Sanitaria, 2009, 23:506-511. doi: http://dx.doi.org/10.1016/j.gaceta.2009.01.011 PMID:19406531 113. Sanchis Calvo A, Martinez-Frias M. Clinical epidemiological study of neural tube defects classified according to the five sites of closure. Anales Espanoles de Pediatria, 2001, 54:165-173. doi: http://dx.doi.org/10.1016/S1695-4033(01)78673-0 PMID:11181213 114. Liu J et al. Prevalence of neural tube defects in economically and socially deprived area of China. Child’s Nervous System, 2007, 23:1119-1124. doi: http://dx.doi.org/10.1007/s00381-007-0344-3 PMID:17450368 115. Pei LJ et al. The epidemiology of neural tube defects in high-prevalence and low-prevalence areas of China. Zhonghua Liu Xing Bing Xue Za Zhi, 2003, 24:465-470. PMID:12848911 116. Li Z et al. Prevalence of major external birth defects in high and low risk areas in China, 2003. Zhonghua Liu Xing Bing Xue Za Zhi, 2005, 26:252-257. PMID:15941530 117. Bower C, D’Antoine H, Stanley FJ. Neural tube defects in Australia: trends in encephaloceles and other neural tube defects before and after promotion of folic acid supplementation and voluntary food fortification. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2009, 85:269-273. doi: http://dx.doi.org/10.1002/bdra.20536 PMID:19180646 118. Li Z et al. Extremely high prevalence of neural tube defects in a 4-county area in Shanxi Province, China. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2006, 76:237-240. doi: http://dx.doi.org/10.1002/bdra.20248 PMID:16575897 119. Nikkilä A, Rydhstrom H, Kallen B. The incidence of spina bifida in Sweden 1973–2003: the effect of prenatal diagnosis. European Journal of Public Health, 2006, 16:660-662. doi: http://dx.doi.org/10.1093/eurpub/ckl053 PMID:16672253 120. Petrova JG, Vaktskjold A. The incidence of neural tube defects in Norway and the Arkhangelskaja Oblast in Russia and the association with maternal age. Acta Obstetricia et Gynecologica Scandinavica, 2009, 88:667-672. doi: http://dx.doi. org/10.1080/00016340902898008 PMID:19353336
40
Capitolo 2 Il quadro globale della lesione midollare
121. Rankin J et al. The changing prevalence of neural tube defects: a population-based study in the north of England, 1984–96. Northern Congenital Abnormality Survey Steering Group. Paediatric and Perinatal Epidemiology, 2000, 14:104-110. doi: http:// dx.doi.org/10.1046/j.1365-3016.2000.00246.x PMID:10791652 122. Catz A. Recovery of neurologic function following nontraumatic spinal cord lesions in Israel. Spine (Phila Pa 1976). 2004 Oct 15;29(20):2278–2282; discussion 2283. 123. Werhagen L, Hultling C, Molander C. The prevalence of neuropathic pain after non-traumatic spinal cord lesion. Spinal Cord, 2007, 45:609-615. doi: http://dx.doi.org/10.1038/sj.sc.3102000 PMID:17160075 124. Osterthun R, Post MWM, van Asbeck FWA. Characteristics, length of stay and functional outcome of patients with spinal cord injury in Dutch and Flemish rehabilitation centers. Spinal Cord, 2009, 47:339-344. doi: http://dx.doi.org/10.1038/sc.2008.127 PMID:19002154 125. Gupta A et al. Non-traumatic spinal cord lesions: epidemiology, complications, neurological and functional outcome of rehabilitation. Spinal Cord, 2009, 47:307-311. doi: http://dx.doi.org/10.1038/sc.2008.123 PMID:18936767 126. Quintana-Gonzales A et al. Nontraumatic spinal cord injury: etiology, demography and clinics. Rev Peru Med Exp Salud Publica, 2011, 28:633-638. PMID:22241260 127. Ahoniemi E, Pohjolainen T, Kautiainen H. Survival after spinal cord injury in Finland. Journal of Rehabilitation Medicine, 2011, 43:481-485. doi: http://dx.doi.org/10.2340/16501977-0812 PMID:21533327 128. Sabre L et al. Traumatic spinal cord injury in two European countries: why the differences? European Journal of Neurology, 2013, 20:293-299. doi: http://dx.doi.org/10.1111/j.1468-1331.2012.03845.x PMID:22891855 129. O’Connor PJ. Survival after spinal cord injury in Australia. Archives of Physical Medicine and Rehabilitation, 2005, 86:37-47. PMID:15640987 130. Hagen EM et al. Traumatic spinal cord injuries – incidence, mechanisms and course. Tidsskrift for Den Norske Laegeforening, 2012, 132:831-837. doi: http://dx.doi.org/10.4045/tidsskr.10.0859 PMID:22511097 131. Strauss DJ et al. Trends in life expectancy after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2006, 87:10791085. doi: http://dx.doi.org/10.1016/j.apmr.2006.04.022 PMID:16876553 132. Saunders LL et al. Traumatic spinal cord injury mortality, 1981–1998. The Journal of Trauma, 2009, 66:184-190. doi: http://dx.doi. org/10.1097/TA.0b013e31815644e5 PMID:19131823 133. Soden RJ et al. Causes of death after spinal cord injury. Spinal Cord, 2000, 38:604-610. doi: http://dx.doi.org/10.1038/sj.sc.3101080 PMID:11093321 134. National Spinal Cord Injury Statistical Center. Birmingham, Alabama Spinal Cord Injury Facts and Figures at a Glance, February 2012 (https://www.nscisc.uab.edu/PublicDocuments/fact_figures_docs/Facts%202012%20Feb%20Final.pdf, accessed 9 January 2013). 135. Hagen EM et al. Mortality after traumatic spinal cord injury: 50 years of follow-up. Journal of Neurology, Neurosurgery, and Psychiatry, 2010, 81:368-373. doi: http://dx.doi.org/10.1136/jnnp.2009.178798 PMID:19726408 136. Rathore MFA. 2013. Spinal Cord Injuries in the Developing World. In: JH Stone, M Blouin, eds. International encyclopedia of rehabilitation. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/141/ 137. Couris CM et al. Characteristics of adults with incident traumatic spinal cord injury in Ontario, Canada. Spinal Cord, 2010, 48:39-44. doi: http://dx.doi.org/10.1038/sc.2009.77 PMID:19546873 138. Fassett DR et al. Mortality rates in geriatric patients with spinal cord injuries. Journal of Neurosurgery, 2007, 7:277-281. PMID:17877260 139. Demetriades D et al. The effect of trauma center designation and trauma volume on outcome in specific severe injuries. Annals of Surgery, 2005, 242:512-517. PMID:16192811 140. Harvey C et al. New estimates of the direct costs of traumatic spinal cord injuries: results of a nationwide survey. Paraplegia, 1992, 30:834-850. doi: http://dx.doi.org/10.1038/sc.1992.160 PMID:1287537 141. Johnson RL, Brooks CA, Whiteneck GG. Cost of traumatic spinal cord injury in a population-based registry. Spinal Cord, 1996, 34:470-480. doi: http://dx.doi.org/10.1038/sc.1996.81 PMID:8856854 142. Bötel U et al. The cost of ventilator-dependent spinal cord injuries-patients in the hospital and at home. Spinal Cord, 1997, 35:4042. doi: http://dx.doi.org/10.1038/sj.sc.3100345 PMID:9025219 143. DeVivo MJ. Causes and costs of spinal cord injury in the United States. Spinal Cord, 1997, 35:809-813. doi: http://dx.doi. org/10.1038/sj.sc.3100501 PMID:9429259 144. Dryden DM et al. Direct health care costs after traumatic spinal cord injury. The Journal of Trauma, 2005, 59:443-449. PMID:16294090 145. Mak KS et al. Incidence and treatment patterns in hospitalizations for malignant spinal cord compression in the United States, 1998–2006. International Journal of Radiation Oncology, Biology, Physics, 2011, 80:824-831. doi: http://dx.doi.org/10.1016/j. ijrobp.2010.03.022 PMID:20630663
41
Prospettive Internazionali sulla lesione del midollo spinale
146. New PW, Jackson T. The costs and adverse events associated with hospitalization of patients with spinal cord injury in Victoria, Australia. Spine, 2010, 35:796-802. PMID:20228702 147. Greenwald BD et al. Gender-related differences in acute rehabilitation lengths of stay, charges, and functional outcomes for a matched sample with spinal cord injury: a multicenter investigation. Archives of Physical Medicine and Rehabilitation, 2001, 82:1181-1187. doi: http://dx.doi.org/10.1053/apmr.2001.24891 PMID:11552188 148. St. Andre JR et al. A comparison of costs and health care utilization for veterans with traumatic and nontraumatic spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:27-42. doi: http://dx.doi.org/10.1310/sci1604-27 149. Sundance PD et al. Systematic care management: clinical and economic analysis of a national sample of patients with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2004, 10:17-34. doi: http://dx.doi.org/10.1310/2E3M-X01K-786H-V8FC 150. Baaj AA et al. Health care burden of cervical spine fractures in the United States: analysis of a nationwide database over a 10-year period. Journal of Neurosurgery. Spine, 2010, 13:61-66. doi: http://dx.doi.org/10.3171/2010.3.SPINE09530 PMID:20594019 151. DeVivo MJ et al. Costs of care following spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:1-9. doi: http:// dx.doi.org/10.1310/sci1604-1 152. Cao Y et al. Lifetime direct costs after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:10-16. doi: http:// dx.doi.org/10.1310/sci1604-10 153. National Spinal Cord Injury Statistical Center. Birmingham, Alabama Spinal Cord Injury Facts and Figures at a Glance, February 2013 (https://www.nscisc.uab.edu/PublicDocuments/fact_figures_docs/Facts%202013.pdf, accessed 23 Mai 2013). Based on data from Economic Impact of SCI published in Topics in Spinal Cord Injury Rehabilitation, 2011, 16(4). 154. Access Economics for the Victorian Neurotrauma Initiative. The economic cost of spinal cord injury and traumatic brain injury in Australia. 2009 (http://www.tac.vic.gov.au/about-the-tac/our-organisation/research/tac-neurotraumaresearch/vni/the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia. pdf?bcsi_scan_c7a381ba8bd8a412=Ll1KKoXsl2UO97L0ZcjjMUATHXYjAAAAPRI4Bw==&bcsi_scan_ filename=the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia.pdf, accessed 9 January 2013) Based on Transport Accident Commission (TAC) data on the costs for healthcare, long term care, equipment and modifications, administration and compensation to families for TBI and SCI patients in Victoria for pay years 2004–2008. 155. Cassell CH et al. Health care expenditures among children with and those without spina bifida enrolled in Medicaid in North Carolina. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:1019-1027. doi: http://dx.doi.org/10.1002/ bdra.22864 PMID:22021073 156. Bowkett B, Deverall E. Paediatric spina bifida inpatient treatment at Wellington Regional Hospital: a cost analysis of sequential patients. The New Zealand Medical Journal, 2012, 125:13-18. PMID:22426607 157. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 158. Munce SE et al. Direct costs of adult traumatic spinal cord injury in Ontario. Spinal Cord, 2013, 51:64-69. doi: http://dx.doi. org/10.1038/sc.2012.81 PMID:22801189 159. Haeusler JM et al. Pilot study on the comprehensive economic costs of major trauma: consequential costs are well in excess of medical costs. The Journal of Trauma, 2006, 61:723-731. PMID:16967014 160. Noonan VK et al. The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry. Spinal Cord, 2012, 50:22-27. doi: http://dx.doi.org/10.1038/sc.2011.109 PMID:22042297 161. Rick Hansen Institute Spinal Cord Injury Registry. web site (http://rickhansenregistry.org, accessed 17 March 2013). 162. O’Connor PJ. Development and utilisation of the Australian spinal cord injury register. Spinal Cord, 2000, 38:597-603. doi: http:// dx.doi.org/10.1038/sj.sc.3101048 PMID:11093320 163. Stover SL et al. History, implementation, and current status of the national spinal cord injury database. Archives of Physical Medicine and Rehabilitation, 1999, 80:1365-1371. doi: http://dx.doi.org/10.1016/S0003-9993(99)90246-0 PMID:10569429 164. DeVivo MJ, Go BK, Jackson AB. Overview of the National Spinal Cord Injury Statistical Center database. The Journal of Spinal Cord Medicine, 2002, 25:335-338. PMID:12482178 165. World Health Organization. International Classification of Diseases, 2010, web site (http://www.who.int/classifications/icd/en/, accessed 18 March 2012). 166. OECD, World Health Organization, Eurostat. A system of health accounts, OECD Publishing, 2011 (http://www.oecd-ilibrary.org/ social-issues-migration-health/a-system-of-health-accounts_9789264116016-en, accessed 17 May 2013). 167. Marino RJ et al. International standards for neurological classification of spinal cord injury. The Journal of Spinal Cord Medicine, 2003, 26 Suppl 1:S50-S56. PMID:16296564
42
Capitolo 2 Il quadro globale della lesione midollare
168. Waring WP et al. 2009 review and revisions of the International Standards for the Neurological Classification of Spinal Cord Injury. The Journal of Spinal Cord Medicine, 2010, 33:346-352. PMID:21061894 169. Kirshblum SC et al. International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 2011, 34:535-546. doi: http://dx.doi.org/10.1179/204577211X13207446293695 PMID:22330108 170. Kirshblum SC et al. Reference for the 2011 revision of the International Standards for Neurological Classification of Spinal Cord Injury. The Journal of Spinal Cord Medicine, 2011, 34:547-554. doi: http://dx.doi.org/10.1179/107902611X13186000420242 PMID:22330109 171. Biering-Sørensen F et al. International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi.org/10.1038/ sj.sc.3101930 PMID:16955072 172. International SCI Data Sets. International Spinal Cord Society (ISCoS) (http://www.iscos.org.uk/international-sci-data-sets, accessed 22 May 2013). 173. DeVivo MJ. International Spinal Cord Injuury Core Data Set. Spinal Cord, 2006, 44:535-540. 174. New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord, advance online publication, January 2013. doi: 10.1038/sc.2012.160. doi: http://dx.doi.org/10.1038/sc.2012.160 175. DeVivo MJ et al. Standardization of data analysis and reporting of results from the International Spinal Cord Injury Core Data Set. Spinal Cord, 2011, 49:596-599. doi: http://dx.doi.org/10.1038/sc.2010.172 PMID:21135863 176. Global Mapping of Spinal Cord Injury (SCI) Epidemiology. Towards a living data repository. The International Spinal Cord Society, web site (http://www.iscos.org.uk/sci-global-mapping, accessed 4 June, 2013). 177. Biering-Sørensen F et al. Developing core sets for persons with spinal cord injuries based on the International Classification of Functioning, Disability and Health as a way to specify functioning. Spinal Cord, 2006, 44:541-546. doi: http://dx.doi.org/10.1038/ sj.sc.3101918 PMID:16955074 178. Cieza A et al. ICF Core Sets for individuals with spinal cord injury in the long-term context. Spinal Cord, 2010, 48:305-312. doi: http://dx.doi.org/10.1038/sc.2009.183 PMID:20065984 179. Kirchberger I et al. ICF Core Sets for individuals with spinal cord injury in the early post-acute context. Spinal Cord, 2010, 48:297304. doi: http://dx.doi.org/10.1038/sc.2009.128 PMID:19786973 180. Gale Encyclopedia of Medicine. 4th ed. Farmington Hills, Michigan: Gale Cengage Learning Inc; 2011. 181. Centers for Disease Control and Prevention. Case definition of spinal cord injury. 1990 (http://wwwn.cdc.gov/nndss/script/ casedef.aspx?CondYrID=854&DatePub=1/1/1990%2012:00:00%20AM, accessed 17.5.2013). 182. Ackery A, Tator C, Krassioukov A. A global perspective on spinal cord injury epidemiology. Journal of Neurotrauma, 2004, 21:13551370. doi: http://dx.doi.org/10.1089/neu.2004.21.1355 PMID:15672627 183. Draulans N et al. Etiology of spinal cord injuries in sub-Saharan Africa. Spinal Cord, 2011, 49:1148-1154. doi: http://dx.doi. org/10.1038/sc.2011.93 PMID:21987062 184. Solagberu BA et al. Pre-hospital care in Nigeria: a country without emergency medical services. Nigerian Journal of Clinical Practice, 2009, 12:29-33. PMID:19562917 185. Afuwape OO et al. Preventable trauma deaths in Ibadan: a comparison of revised trauma score and panel review. West African Journal of Medicine, 2011, 30:19-23. doi: http://dx.doi.org/10.4314/wajm.v30i1.69879 PMID:21863584 186. Thanni LO, Kehinde OA. Trauma at a Nigerian teaching hospital: pattern and documentation of presentation. African Health Sciences, 2006, 6:104-107. PMID:16916301 187. Noonan VK et al. The validity of administrative data to classify patients with spinal column and cord injuries. Journal of Neurotrauma, 2013, 30:173-180. doi: http://dx.doi.org/10.1089/neu.2012.2441 PMID:23002989
43
Capitolo 3 Prevenzione della lesione midollare
“Sono un uomo di 52 anni con lesione midollare incompleta ma grave (C4). La lesione midollare è stata causata nel 1973 da un incidente stradale, quando avevo 16 anni. La colpa è stata mia: stavo guidando troppo velocemente, senza la patente, ed ero un po’ ubriaco. Riesco a muovere un pochino le braccia ed ad utilizzare le mani limitatamente. Riesco a stare in piedi, ma non cammino. Non posso scrivere al computer, ma posso utilizzare il programma che converte la parola in testo scritto per poter scrivere al computer. Per muovermi utilizzo la mia carrozzina elettrica. Per gestire i miei bisogni personali, ho l’assistenza personale 24 ore su 24.” (Stig, Danimarca) “Tra le stagioni di semina del riso, ho lavorato come operaio nei cantieri di Hanoi per guadagnare qualche soldo in più, per avere la sicurezza di comprarmi una buona scorta di semi per la stagione del riso e per soddisfare le esigenze dei miei figli per la loro scuola e per il loro futuro. Un giorno, mentre ero in città, la mia vita mi è crollata letteralmente addosso quando ho perso il controllo mentre trasportavo un carico di mattoni su un’asse bagnata.” (Anonimo, Vietnam) “Sono caduto dal tetto di casa mia nel 1976 con la conseguenza di una lesione midollare (C5–6), che mi ha reso incapace di muovere le gambe e ha limitato il controllo dell’uso delle braccia e delle dita.” (David, USA) “Nel 1998 ho subito una ferita da arma da fuoco che mi ha provocato una lesione midollare a livello T6–7.” (Robert, Uganda) “Mi sono infortunato nell’ottobre 1997 mentre facevo body surf a Noosa Heads, Queensland, Australia. Come conseguenza della mia lesione midollare (C4–5) riesco solo a muovere la testa e non ho alcuna funzione motoria negli arti. Si sono presentate all’improvviso molte sfide quando mi sono imbattuto in questa difficile situazione che ha richiesto lo sviluppo di interessanti abilità per risolvere i miei problemi per massimizzare la mia indipendenza e anche per ridurre il carico sugli altri.” (Brad, Australia) “Sono un tetraplegico che ha subito una lesione midollare molti anni fa nel 1974 giocando a rugby quando avevo 15 anni e mezzo di età.” (Richard, Nuova Zelanda)
3
Prevenzione della lesione midollare Quando si verifica una lesione midollare (LM) in seguito ad un infortunio traumatico, come un incidente stradale o una caduta, nel giro di pochi secondi si passa da una condizione di buona salute alla permanente disabilità. Sia in caso di lesione di origine traumatica che non traumatica, la notizia incoraggiante è che una buona parte di queste lesioni sono prevenibili. La prevenzione primaria consiste in azioni per evitare o rimuovere le cause di LM per un individuo o una popolazione prima che il problema si presenti, ad es. azioni per ridurre infortuni stradali. La prevenzione secondaria entra in gioco quando si verifica la LM. L’obiettivo è quello di fornire una tempestiva diagnosi e terapia e di limitare la disabilità (vedi il Capitolo 4: Sistema sanitario e le esigenze di riabilitazione: Soccorso pre-ospedaliero e terapia in fase acuta). Il riconoscimento tempestivo della possibilità di LM in seguito ad un infortunio, insieme al trasporto adeguato verso una struttura appropriata, e l’accesso in riabilitazione in fase acuta, fanno parte della prevenzione secondaria. La prevenzione terziaria si concentra sulla riabilitazione post-acuta e sugli interventi ambientali per ridurre le complicanze e per promuovere una inclusione soddisfacente della persona con mielolesione in famiglia e nella vita comunitaria (1). Tutte le forme di prevenzione sono necessarie. Le persone con disabilità hanno enfatizzato che l’accesso ai servizi sanitari, insieme ai diritti umani e all’inclusione sociale, sono le soluzioni alla difficile situazione delle condizioni di salute associate con la disabilità (2). I principi dei diritti umani di rispetto e dignità, come sottolineati dalla Convenzione delle Nazioni Unite sui diritti delle persone con disabilità (3), comportano che le strategie di prevenzione vengano intraprese in modo da non sminuire le persone che vivono con LM (4). Questo capitolo tratta degli interventi di prevenzione primaria per ridurre l’incidenza di LM, prevalentemente di origine traumatica. Evidenzia gli interventi di efficacia comprovata e indica gli interventi che necessitano di implementazione nel campo della ricerca. La prevenzione secondaria e terziaria vengono affrontate nei capitoli successivi.
47
Prospettive Internazionali sulla lesione del midollo spinale
Cause della lesione midollare traumatica La LM traumatica può verificarsi per meccanismi molteplici e molto diversi, ad es. incidenti stradali, cadute, violenza, e durante diverse attività, ad es. lavorative, sportive, domestiche. Le strategie di prevenzione tendono a correlarsi al contesto specifico in cui c’è un rischio maggiore di infortunio. Questa sezione tratta la prevenzione della LM traumatica in funzione della sua causa.
e dopo l’incidente come descritto per primo da Haddon (8) (vedi Tabella 3.1).
L’approccio alla prevenzione dell’incidente con sistemi di sicurezza
Incidenti stradali Mentre i contesti ed i meccanismi specifici variano tra e all’interno dei paesi, gli incidenti stradali rappresentano la causa più comune di LM in tutto il mondo. In relazione alle statistiche globali degli incidenti stradali (vedi Capitolo 2), l’incidenza di LM è più elevata nei giovani adulti e nel genere maschile (5–7). Ridurre l’incidenza degli incidenti stradali è quindi un elemento significativo nella prevenzione di LM e può essere affrontato nelle fasi di: prima dell’incidente, durante l’incidente
L’adozione di un approccio alla prevenzione dell’incidente stradale con sistemi di sicurezza è stata fondamentale nella riduzione di morti e di disabilità associate agli incidenti stradali nei paesi ad alto reddito (Figura 3.1) (9, 12). Questo approccio riconosce che l’interazione di tutti i tipi di veicoli con i diversi tipi di fruitori della strada provoca collisioni con elevata probabilità, e, se i componenti (automobili, persone e strade) e la loro interazione non sono correttamente gestite (progettazione del sistema) questo aumenterà gli incidenti con gravi menomazioni e mortalità (9). L’approccio con misure di sicurezza cerca di identificare e rettificare le cause maggiori di “errore” in ognuna delle fasi di pre-incidente, incidente e post-incidente. Per esempio, i fattori principali di rischio per gli occupanti di un veicolo sono ben noti: velocità eccessiva o inappropriata, non utilizzo delle cinture di sicurezza e dei sistemi
Tabella 3.1 La Matrice Haddon applicata alla prevenzione di infortuni stradali Fase Umani Pre-incidente Prevenzione incidenti Informazioni Atteggiamenti Conoscenza delle menomazioni Controlli di polizia Uso dei sistemi di sicurezza Conoscenza delle menomazioni Fattori Veicoli ed Attrezzatura Controllo tecnico della strada Illuminazione Frenata Maneggevolezza Controllo della velocità Sistema di sicurezza per occupanti Altri dispositivi di sicurezza Design adeguati per le misure di protezione Facilità d’accesso Protezione antincendio Ambiente Progettazione e disposizione delle strade Limiti di velocità Strutture pedonali
Incidente
Prevenzione del danno causato durante l’incidente
Sistemi di sicurezza lungo la strada
Post-incidente
Supporto alle funzioni vitali
Pronto Soccorso Intervento Medico
Facilitazione ai Mezzi di soccorso e per Traffico congestionato
Fonte (9).
48
Capitolo 3 Prevenzione della lesione midollare
Figura 3.1 L’approccio con “sistemi di sicurezza” alla sicurezza della strada CONOSC I ENZA RISCH DEL ED I I T LE N E LEG D I NC CONTROLLAT À T I C O E VEL HE ENTI C CAUSAN CID
LI ADA STR GI
COSA SON OG LI I
CORSIE DI ADE E STR ERGENZA SICURE EM I INFORTUN IO RAV OG
R PREVENIRE E PE IN AR
VEICOLI SICURI
. LI
 Fonti (10,11)
CEN ZE P ER V E
UC ED
ICOLI E
PATENTI
di tenuta dei bambini, e guida sotto l’effetto di alcool o droghe (13). Lo sviluppo e l’implementazione di piani d’azione con obiettivi di riduzione, basati sui dati degli incidenti e sugli interventi basati sull’evidenza, sono i componenti chiave dell’approccio con sistemi di sicurezza (12, 14). Il successo dell’attuazione dei piani d’azione per la sicurezza stradale richiede una spinta efficace, l’accettazione da parte dell’intera comunità, la cooperazione multisettoriale intergovernativa con a capo una ben identificata agenzia (per esempio, un’agenzia indipendente che operi all’interno del Ministero dei Trasporti), e la cooperazione dell’industria e delle organizzazioni non governative (ONG) come le associazioni automobilistiche, la professione medica ed i gruppi che promuovono la sicurezza stradale (9). L’approccio basato sui sistemi di sicurezza è ciclico ed olistico, e comprende: ■ l’identificazione dei problemi; ■ la formulazione di strategie; ■ l’implementazione di policy specifiche; ■ la valutazione, la messa a punto e la rivalutazione.
■ I provvedimenti adottati possono essere: ■ promulgare e far rispettare leggi appropriate
riguardo alla guida in stato di ebrezza, la velocità, l’utilizzo delle cinture e del casco, ecc.; ■ educare il pubblico sulla sicurezza stradale attraverso il marketing sociale, le attività di pubbliche relazioni, ecc.; ■ utilizzare misure di sicurezza progettate dal punto di vista ingegneristico, come l’airbag, i sistemi di tenuta e la progettazione stradale. L’approccio basato su sistemi di sicurezza si è dimostrato cruciale per la riduzione che si è registrata negli incidenti stradali, ed una base di dati di evidenze dei sistemi per la sicurezza stradale viene continuamente aggiornato (9, 12). Il trasferimento delle conoscenze e della tecnologia dai paesi ad alto reddito ai paesi a medio e basso reddito – prendendo in considerazione le differenze degli ambienti stradali, il tipo di veicoli, l’utilizzo dei veicoli ed i vincoli delle risorse – è cruciale per affrontare la proiezione futura dell’incremento della mortalità e delle morbilità legate agli incidenti (15).
AZ IO N EE D IN FORM AZ
IONE
TOLLERABILITÀ ALLA FORZA FISICA
RTE MO
LAV OR
A ACCESSO
DE AA TEM L SIS
S
49
Prospettive Internazionali sulla lesione del midollo spinale
Interventi specifici per ridurre le lesioni midollari fra gli automobilisti
Sebbene vadano implementati interventi individuali specifici per la LM (16, 17) (vedi Riquadro 3.1), i benefici maggiori si avranno adottando un approccio sistemico – focalizzato sull’ambiente stradale in maniera olistica (ad es. impiego del terreno, accessibilità a e per i luoghi abitati, vicinanza
alle abitazioni ed altri aspetti) – prendendo in considerazione i bisogni e le abilità di ogni utente della strada, e progettando e promuovendo l’uso di veicoli sicuri non solo per gli occupanti, ma anche per gli altri che sulla strada potrebbero incorrere in un eventuale incidente causato da questi veicoli (9, 12). Una sintesi di interventi per gli incidenti stradali è mostrata nella Tabella 3.2.
Riquadro 3.1. Gli incidenti con cappottamento comportano un rischio maggiore di lesione midollare Matilda, una domenica mattina, era sola e alla guida della vettura del suo ragazzo dopo una festa per i 30 anni tenutasi presso una fattoria di un suo amico. Lei aveva bevuto fino alle prime ore del mattino e non aveva dormito molto. La macchina è sbandata nella corsia di emergenza della strada, la quale era mal costruita, presentando una struttura molto scoscesa. Nel giro di una frazione di secondo, il veicolo andò fuori controllo. L’interno della ruota anteriore ha urtato contro il ciglio della strada, causando il cappottamento della vettura. L’incidente è stato grave, come le ferite di Matilde – frattura e lussazione del collo che ha reso Matilda tetraplegica. La storia di Matilda è tipica. Incidenti con cappottamento sono associati a infortuni gravi. La testa dell’occupante può venire a contatto con il tetto del veicolo quando questo si cappotta e l’occupante si trova con la testa all’ingiù, con il peso del corpo appoggiato sul collo (16,18,19). La compressione assiale conseguente è associata alla frattura-lussazione del rachide cervicale. Incidenti con cappottamento sono relativamente comuni, soprattutto in aree rurali dove i fattori di rischio sono le alte velocità e lo scarso mantenimento dei veicoli e le infrastrutture. Le strategie per ridurre l’incidenza e gli effetti degli incidenti con cappottamento sono:
■■ approcci regolamentati che includono l’introduzione di standard di protezione contro il cappottamento dei veicoli (20);
■■ l’utilizzo dei controlli elettronici di stabilità nelle automobili, ovvero tecnologia computerizzata che migliora la sicurezza di stabilità del veicolo attraverso l’individuazione e la riduzione dello sbandamento (21,22);
■■ l’installazione di barriere di sicurezza e corsie di emergenza di tenuta per favorire la sicurezza sul ciglio delle strade (23);
■■ interventi per contrastare l’eccesso di velocità, la stanchezza e la guida in stato di ebrezza. Gli interventi precisi includono:
■■ Standard obbligatori per progettare i sedili del veicolo che specificano i requisiti d’altezza per i poggiatesta, insieme al progetto di sedili sofisticati, possono mitigare la probabilità e la gravità delle distorsioni del tessuto molle del rachide cervicale, cioè infortuni come il colpo di frusta (24–26). ■■ L’utilizzo corretto delle cinture di sicurezza a tre punti prevengono gravi colpi di testa contro le strutture interne del veicolo, che sono associate a lesioni di flessione-tensione (24,27,28), prevengono l’espulsione dal veicolo (29), e sono efficaci nel ridurre lesioni toraciche e lombari. L’accertamento delle forze dell’ordine, insieme agli interventi comportamentali come i sistemi di raccomandazione ad allacciare le cinture, hanno dimostrato di assicurare un elevato livello di uso delle cinture.(20,30). ■■ I sistemi di tenuta per bambini che sono specifici all’età ed al peso del bambino sono cruciali nel ridurre il rischio di infortunio dei neonati e dei bambini, e sono preferibili al sistema in braccio con cintura a due punti, che è stato associato con infortuni toracico-lombari ed addominali (13,31–33). ■■ Mentre la funzione del casco per motociclisti per prevenire lesioni cerebrali traumatiche è ormai ben consolidata, il suo ruolo nella prevenzione di lesioni midollari al rachide cervicale non è chiaro. Ulteriori ricerche sono necessarie per determinare se il casco offre anche questa protezione (34).
50
Capitolo 3 Prevenzione della lesione midollare
Mentre questi interventi riguardano principalmente i veicoli, una particolare modifica ambientale può riguardare le misure per la regolamentazione del traffico (ad es. rotatorie, rallentatori sonori, spartitraffico, e così via) che hanno il potenziale di ridurre i tassi di tutti i tipi di incidenti stradali nelle aree urbane.
Proteggere gli altri utenti della strada
Le problematiche nella prevenzione di LM ed altri infortuni per gli utenti stradali vulnerabili (motociclisti, pedoni, ciclisti) sono complesse e si basano su interventi comportamentali congegnati per ridurre il rischio di incidenti e per fornire ambienti stradali sicuri che assicurano la separazione appropriata fra pedoni e ciclisti dai veicoli.
Queste problematiche sono particolarmente urgenti nei paesi a basso e medio reddito dove il livello di motorizzazione sta aumentando rapidamente anche se il mezzo principale di trasporto rimane il camminare, andare in bicicletta o con veicoli poco sicuri come i furgoncini strapieni privi di sistemi di sicurezza per gli occupanti (9). Questo elevato volume di traffico si associa ad un aumentato rischio di incidente, ed il problema è maggiore se lo sviluppo delle infrastrutture va a rilento. In questo contesto il trasferimento delle tecnologie e l’adozione di interventi per “sistemi di sicurezza” hanno un notevole spazio di applicazione nel portare a rapide riduzioni della mortalità, morbilità e disabilità legata al traffico (44).
Tabella 3.2 Sintesi degli interventi per gli incidenti stradali Interventi che funzionano e dovrebbero essere implementati in tutto il mondo Legislazioni e rispetto delle leggi per guida in stato di ebrezza (includendo il limite di concentrazione di alcol nel sangue di 0,05 g/dl per tutti gli utenti della strada e più bassa per i neopatentati, l’utilizzo di alcoltest random, età minima per l’acquisto di bevande alcoliche, controllo dei punti vendita) (9) Utilizzo delle cinture di sicurezza (36) Utilizzo dei sistemi di tenuta per bambini (35) Caschi per motociclisti (34,40) Stabilire e far rispettare i limiti di velocità (includendo l’uso degli autovelox, limitare la velocità nei pressi delle scuole, ospedali, ecc.) Luci di marcia diurna per i motocicli (9) Progettare le strade per separare pedoni e veicoli a due ruote dalle automobili e veicoli più pesanti (9,12,41) Misure di controllo del traffico per zone ampie (42) Sistema graduato a punti per conseguire la patente di guida (43) Promettenti, necessaria maggiore valutazione Utilizzo di sedute rialzate per bambini che hanno superato l’età ed il peso massimo per entrare nei loro dispositivi auto specifici. Inefficaci o dannosi, dovrebbero essere scoraggiati Educazione stradale non accompagnata dai cambiamenti legislativi o misure che rendono gli ambienti stradali o i veicoli più sicuri
Educazione scolastica per i guidatori (37,38) Mettere neonati o bambini su un sedile con l’airbag (39)
51
Prospettive Internazionali sulla lesione del midollo spinale
Cadute Oltre agli incidenti stradali, le cadute contribuiscono notevolmente alle LM. Sono stati individuati quattro modalità che provocano LM, vale a dire: ■ cadute a pari livello (ad es. praticare sport, inciampare su di un tappeto, cadere mentre si porta un peso pesante [vedi Riquadro 3.2]); ■ cadute da altezze minori di un metro (ad es. cadere dalle scale, cadere da un muretto basso); ■ cadute da altezze di un metro o più (ad es. cadere da un palazzo o da un cavallo); ■ essere colpiti da un oggetto che cade (ad es. frana di un pozzo minerario). Molte cadute gravi capitano sul luogo di lavoro o durante gli sport, o in abitazioni o residenze poco sicure. In casa, le cadute possono verificarsi
sulle scale o a causa di altri ostacoli, e sono particolarmente frequenti nelle persone anziane e molto giovani. La prevenzione delle cadute può essere migliorata apportando modifiche agli ambienti in cui vivono le persone anziane, come l’eliminazione del disordine, di tappeti rovinati e di pavimenti irregolari e fornendo buona illuminazione, corrimani e sedili, servizi igienici e letti di altezza adeguata (48). I programmi per la valutazione dell’equilibrio possono identificare chi è a rischio e possono condurre all’implementazione di misure che migliorano l’equilibrio e prevengono cadute, come categorie di esercizi e fornitura di apparecchi assistivi appropriati (ad es. deambulatori) e l’educazione degli utenti sul loro utilizzo e manutenzione. La prevenzione delle cadute include la modifica dell’ambiente, la messa in atto delle leggi e dei regolamenti, l’educazione della popolazione per quanto concerne il rischio, e fornendo
Riquadro 3.2 Cadute durante il trasporto di un carico sulla testa In molti paesi a basso reddito le persone trasportano carichi sulla testa. I facchini trasportano regolarmente carichi sulla testa che pesano fino a 100 Kg. Questa pratica è stata osservata in Bangladesh (45), Ghana (46) e Sierra Leone (47). In Bangladesh le persone che subiscono LM cervicale causata da cadute durante il trasporto di un carico pesante sulla testa – in molti casi si tratta di prodotti agricoli, fertilizzanti o riso – sono spesso uomini giovani poveri che lavorano come facchini e agricoltori. Il rischio di LM dovuto alle cadute durante il trasporto di un carico pesante sulla testa è molto maggiore per i facchini nuovi e senza esperienza, per i bambini, e quando il carico eccede i 50 Kg (45). Visto che il facchino o la facchina deve sempre mantenere la testa eretta per mantenere l’equilibrio del carico, è molto difficile per lui/lei guardare la strada o il sentiero che sta percorrendo. Superfici irregolari o scivolose spesso causano cadute. Il sessanta percento dei casi accadono in zone rurali, sul terreno agricolo o su percorsi fangosi. L’individuo che cade perde l’equilibrio e la combinazione della forza della caduta e della forza del carico pesante ha come risultato un incidente ad alta energia. La persona non riesce a togliere il carico pesante dalla propria testa, o non riesce a controllare il movimento anormale del collo causato dal peso e dal momento meccanico del carico. Questo effettivamente trasforma una caduta a bassa energia in una caduta ad alta energia, con conseguente LM. I governi possono facilmente trascurare la portata di questo problema, perché questi infortuni normalmente accadono in comunità rurali e colpiscono individui poveri che non hanno alcuna influenza. La disoccupazione è spesso diffusa e i lavoratori infortunati vengono rimpiazzati facilmente. La portste dell’effetto di queste lesioni sull’individuo e sulle loro famiglie è comunque incommensurabile. La prevenzione può essere ottenuta attraverso il passaggio a metodi alternativi di trasporto dei carichi. Le carriole possono trasportare carichi più pesanti e sono resistenti e più sicure. La promozione della carriola come alternativa deve essere regolamentata e supportata dal governo, e possibilmente anche sussidiata per renderla un’alternativa allettante per i datori di lavoro.
52
Capitolo 3 Prevenzione della lesione midollare
un’immediato trattamento dopo la caduta. La sintesi degli interventi sono riportati nella Tabella 3.3. Il processo di identificare situazioni nelle quali ci sia spazio per la prevenzione degli infortuni nel contesto occupazionale, comporta l’attenta analisi sia della meccanica che è alla base delle cadute sia della sequenza degli eventi che alla fine determina gli infortuni.
Violenza L’utilizzo di armi da fuoco (usate sia per aggressione, che per autolesionismo o senza intenzionalità) è una delle cause più comuni di lesione al midollo spinale, con l’Africa sub-sahariana che detiene la percentuale registrata più alta nel mondo di LM legata alla violenza (38% di tutti i casi di LM) (52). Coltelli ed altri oggetti taglienti possono anche essere utilizzati per infliggere lesioni penetranti che determinano LM (53). Sono stati segnalati anche danni al midollo spinale risultanti da esplosioni di bombe (54). Una
piccola percentuale di cadute dall’alto sono anche dovute a autolesionismo intenzionale. Ci sono prove che suggeriscono, come ci si aspetterebbe, una tendenza ad avere una percentuale minore di violenze da armi da fuoco nelle giurisdizioni dove la legge sulle armi è restrittiva e il numero di possessori di armi è limitato. Le restrizioni sulle licenze per il possesso armi e le politiche della loro compravendita – compresi i divieti, i regimi di concessione, l’età minima per gli acquirenti, il controllo di precedenti – sono state implementate e sembrano essere efficaci in paesi come Australia, Austria, Brasile e Nuova Zelanda. Studi condotti in Colombia ed in El Salvador indicano che l’applicazione dei divieti sul portare armi da fuoco in pubblico può ridurre il tasso di omicidi (55). Inoltre sono necessarie strategie diversificate per ridurre la domanda, ad esempio, di pistole, per distogliere i giovani vulnerabili a far parte di bande. Per quanto riguarda coltelli ed altri oggetti affilati, i governi hanno bisogno, oltre alle misure di controllo, di ampie strategie che riducano i
Tabella 3.3 Sintesi degli interventi sulle cadute Categoria cadute Interventi che funzionano e dovrebbero essere implementati in tutto il mondo Pavimenti in ordine e privi di tappeti rovinati, fornire una buona illuminazione, corrimano e mobili di altezza appropriata Protezione sulle finestre dei grattacieli, barriere sui tetti (49) Macchine agricole sicure* Promettenti, necessaria maggiore valutazione Inefficaci o dannosi, dovrebbero essere scoraggiati Programmi educativi che intervengono in maniera isolata
Cadute a pari livello
Cadute da più di un metro di altezza, ad es. grattacieli, tetti, alberi
Colpiti o schiacciati da un oggetto pesante, ad es. trasporto di oggetti sul capo
Carriole dove applicabili
Imposizione di regolamento per gli edifici (50) Educazione dei genitori con bambini piccoli sul rischio di cadute in relazione a prodotti specifici (51) Regolamenti sul posto di lavoro che limitano il peso trasportato sul capo e l’età dei lavoratori*
Programmi educativi che intervengono in maniera isolata
* Gli interventi probabilmente non sono applicabili in tutti i contesti, soprattutto nei paesi a basso reddito dove le leggi del lavoro potrebbero essere scarse o non applicate.
53
Prospettive Internazionali sulla lesione del midollo spinale
fattori socio-economici che sono alla base dell’utilizzo violento di queste armi. C’è meno evidenza sull’impatto degli sforzi effettuati per ridurre la violenza associata associata all’uso di oggetti come ad esempio coltelli, rispetto all’impatto degli sforzi per ridurre la violenza associata alle armi da fuoco. Fino ad adesso le autorità competenti si sono coalizzate su misure simili a quelle in uso per il controllo delle armi da fuoco. Nel Regno Unito queste includono riforme legislative (ad es. divieti sui coltelli a serramanico, un’età minima per l’acquisto), l’applicazione più rigida delle leggi (iniziative di “ferma e perquisisci”) ed amnistie per le armi. Tuttavia, gli effetti di queste misure non sono ancora chiari (55). Le strategie per prevenire la violenza, oltre a quelle che puntano alla riduzione di accesso a mezzi letali come le pistole ed i coltelli descritti in precedenza, comprendono le seguenti: sviluppare relazioni sicure, stabili e amorevoli fra i bambini ed i loro genitori e badanti per prevenire il maltrattamento minorile ed altre forme di violenza che si sviluppano negli anni; insegnare ai bambini ed agli adolescenti come agire per prevenire il coinvolgimento futuro nella violenza giovanile; ridurre l’accesso e l’utilizzo nocivo di alcol, che è un fattore di rischio per tutte le forme di violenza; promuovere l’equità fra i generi per prevenire la violenza contro le donne; cambiare le normative culturali e sociali che sostengono
la violenza; creare programmi per identificare, assistere e sostenere le vittime.
Cause della lesione midollare non-traumatica La prevenzione della LM non-traumatica dipende da misure più ampie sia per la sanità pubblica che per il controllo delle malattie. Le cause preventivabili di danno midollare non-traumatico includono: ■ malattie trasmissibili – tubercolosi (TBC) e da virus dell’immunodeficienza acquisita (HIV); ■ condizioni non trasmissibili – cancro, malattie degenerative come la osteoartrosi che porta alla stenosi spinale, malattie cardiovascolari; ■ carenze nutrizionali – difetti del tubo neurale, carenza di vitamina B12 (56); ■ complicanze dell’assistenza sanitaria. Alcune strategie di prevenzione relative ad ogni gruppo di condizioni vengono discusse in seguito e sintetizzate nella Tabella 3.4. Infezioni come la TBC sono più frequenti in paesi a basso e medio reddito rispetto a quelli ad alto reddito. La tubercolosi spinale si verifica nel 1–2% delle persone con TBC e data la prevalenza di TBC, questo rappresenterebbe fino al
Tabella 3.4 Sintesi degli interventi per prevenire lesioni midollari non-traumatiche Cause Infezioni (ad es. TBC, HIV) Interventi che funzionano e dovrebbero essere implementati in tutto il mondo Vaccini (Bacillo di Calmette-Guérin per la TBC) Diagnosi tempestiva e cure farmacologiche per TBC spinale Diagnosi tempestiva e cure Fortificazione del grano e delle farine di mais con l’acido folico ed altri micronutrienti (59); supplementi orali giornalieri di acido folico tre mesi prima e dopo il concepimento (60,61). Non disponibili Promettenti, necessaria maggiore valutazione Cure con terapie antiretrovirali altamente attive (HAART) per l’HIV (57)
Cancro Spina bifida
Supplemento intermittente di ferro e acido folico durante gli anni riproduttivi (62,63)
Condizioni degenerative del midollo spinale
54
Capitolo 3 Prevenzione della lesione midollare
20% delle lesioni spinali in alcuni contesti (58,64). La prevalenza di TBC spinale è cresciuta in relazione alla crescita dell’infezione HIV (65–67). Le comuni manifestazioni cliniche includono dolori alla schiena, febbre, perdita di peso e danno neurologico (68). La prevenzione della comparsa di LM come risultato della TBC dipende dalla diagnosi e dalla cura tempestiva (69). La TBC spinale può essere identificata attraverso la biopsia o la risonanza magnetica (RMN). Tuttavia, queste indagini potrebbero non essere facilmente accessibili in paesi a basso e medio reddito, ritardando quindi la diagnosi (70). La cura per TBC spinale comporta l’assunzione di una serie completa di farmaci anti tubercolosi e potrebbe, se indicato, comprendere la chirurgia spinale. Il cancro che si diffonde alla spina dorsale può comprimere il midollo spinale e le strutture
spinali limitrofe. Se questo non viene curato, può causare dolore, paralisi ed incontinenza. La prevenzione della diffusione del cancro al midollo spinale dipende dalla tempestività della diagnosi e della cura, in particolare per i tumori che riguardano il seno, i polmoni e la prostata (71). Le cure per ridurre la pressione sul midollo spinale da parte dei tumori spinali comprendono la radioterapia, la chirurgia, le terapie farmacologiche e la chemioterapia (72,73). Sebbene diversi fattori siano stati associati a difetti del tubo neurale, è stato dimostrato che un’assunzione maggiore di acido folico risulta essere un intervento nutrizionale vitale ed economico per prevenirli (74,75). La meta-analisi dei dati disponibili è alla base di queste scoperte (vedi Riquadro 3.3).
Riquadro 3.3 Interventi per prevenire la spina bifida La spina bifida è un difetto di nascita che si manifesta in tutto il mondo durante la gravidanza. Un’analisi sistematica dell’incidenza della spina bifida ha mostrato che i tassi di incidenza vanno da 2,3 per 10 000 in Brasile (76) a 32,1 per 10 000 in Oman (77). Una meta-analisi condotta per questo rapporto ha calcolato un tasso di incidenza complessivo di 8,4 per 10 000 (vedi Appendice Tecnica C per i metodi e per la terminologia utilizzata). Questo tasso di incidenza complessivo non riflette la variazione nel tasso di incidenza ottenuto dagli studi che riportano dati differenti sulle gravidanze e nascite (vedi il Capitolo 2). I tassi di incidenza complessivi della spina bifida sono circa 4,5/10 000 negli studi che utilizzano dati di nati vivi, mentre quelli che utilizzano i dati di nati vivi e morti o nati morti e di gravidanze interrotte (Termination of Pregnancy – TOP) riportano rispettivamente tassi di incidenza di circa 10,0/10 000 e 9,1/10 000. È stato dimostrato che il consumo di supplementi di acido folico riduce significativamente il rischio di gravidanze con spina bifida o altri difetti neuronali (neural tube defects – NTDs) di circa il 50% (78). Visto che il tubo neurale si chiude nei primi tempi dello sviluppo embrionale (28 giorni dopo il concepimento), il periodo ideale per l’assunzione di acido folico è prima della gravidanza (79). Molte gravidanze non sono programmate e, sfortunatamente, le campagne educative che intendono incoraggiare le donne ad aumentare l’uso di supplementi non hanno raggiunto efficacemente le popolazioni a rischio più elevato, cioè quelle con uno status socioeconomico basso, con scarsa educazione, con uno status di immigrazione, le gravidanze non programmate, ecc. (80). Per contrastare questo problema, alcuni paesi hanno scelto di introdurre legislazioni che prevedessero “l’introduzione obbligatoria di supplementazione alimentare di acido folico” (FAFF) per una varietà di cibi (81). È stato dimostrato che FAFF ha migliorato il livello di acido folico; da quando FAFF è obbligatorio. Gli USA, Canada e l’Australia occidentale hanno riscontrato una riduzione nella prevalenza di NTDs compresa tra il 15 e 50 % dei casi (82). Nonostante la dimostrata efficacia delle leggi sulla FAFF, la FAFF non è stata implementata a livello mondiale, e la legislazione per l’obbligo di FAFF esiste solo nelle Americhe (con l’eccezione del Venezuela) ed in Australia. Vi è una copertura parziale anche nelle Regioni dell’Africa, del Pacifico Occidentale e del Sud-Est asiatico, insieme alla maggior parte delle Regioni nel Mediterraneo Orientale. Esiste una copertura parziale per FAFF nella Regione Europea, ma solo nei paesi dell’Europa orientale (cioè Repubblica di Moldavia, Kazakistan, Uzbekistan, Kirghizistan e Turkmenistan).
…continua 55
Prospettive Internazionali sulla lesione del midollo spinale
…seguito della pagina precedente La figura qui sopra mostra i risultati di una meta-analisi che ha utilizzato i dati raccolti dagli studi condotti sui tassi di incidenza prima e dopo FAFF. La meta analisi mostra una grandezza complessiva degli effetti (rapporto del tasso di incidenza) di 0,43 (intervallo di confidenza 95% 0,39–0,63) quando si utilizzano solo gli studi che includono i nati vivi e morti nella popolazione studiata. Con queste considerazioni, le legislazioni mondiali su FAFF potrebbero potenzialmente ridurre le nascite con spina bifida di circa 38 000 l’anno (vedi Appendice Tecnica D per metodi utilizzati). Nonostante ci siano vantaggi dimostrati del FAFF, molti paesi, specialmente quelli d’Europa occidentale, sono stati restii ad introdurre la legislazione FAFF, a causa di possibili problemi di salute legati all’aumento dei consumi di folati, insieme alla perdita di autonomia vista da alcuni come implicita nel FAFF obbligatorio. Al momento molti paesi senza l’obbligo di FAFF hanno raccomandato alle donne in età riproduttiva di prendere il supplemento di acido folico e anche se questo ha dimostrato di dare qualche beneficio, è stato principalmente limitato a donne con status socioeconomico elevato. Di conseguenza, è necessario condurre altre ricerche per sostenere decisioni politiche informate e per affrontare le preoccupazioni sugli effetti collaterali.
Metanalisi degli effetti della fortificazione degli alimenti con acido folico sui tassi di incidenza della spina bifida Paese Nati vivi Stati Uniti d’America Brasile Israele TOTALE PARZIALE Nati vivi e morti Oman Costa Rica Canada Cile Argentina Sud Africa TOTALE PARZIALE Nati vivi, morti e gravidanze interrotte Canada Canada TOTALE PARZIALE TOTALE j k d e f g h i a b c Riferimenti
0,2
0,4
0,6
0,8 1 Frazione del tasso di incidenza FAFF incrementa il rischio di SB
FAFF riduce il rischio di SB
Fonti: a (83); b (76); c (84); d (77); e (85); f (86); g (87); h (88); i (89); j (90); k (80).
56
Capitolo 3 Prevenzione della lesione midollare
In circa 63 paesi la farina di grano viene per legge fortificata con l’acido folico (91), e ciò ha comportato una documentata riduzione nell’incidenza di spina bifida (77,92,93). Il supplemento di acido folico nel periodo periconcezionale (tre mesi prima e tre mesi dopo il concepimento) ha dimostrato un calo nel tasso di neonati con difetti del tubo neurale, fra cui la spina bifida (60,61). Ad esempio, uno studio in Israele ha dimostrato che tre anni dopo di implementazione con supplemento di acido folico (2002 e 2004) l’incidenza della spina bifida è diminuita da 14,4 a 8,9 per 10 000 nati vivi (84). Le campagne di sensibilizzazione possono aumentare in maniera significativa i livelli di informazione sull’ acido folico (94), ma sono necessarie le campagne continuative per promuovere il consumo nel periodo periconcezionale per ottenere il risultato atteso.
minerarie in contesti piccoli ed informali che hanno meccanismi sanitari e di sicurezza inadeguati (100,101). Gli incidenti legati agli infortuni in miniera potrebbero non essere denunciati alle forze dell’ordine, e le statistiche potrebbero non essere raccolte adeguatamente. L’industria mineraria, tuttavia, offre un esempio di programma per la prevenzione (vedi Riquadro 3.4). Strategie per la prevenzione di infortuni sul luogo di lavoro possono includere l’elaborazione e l’applicazione di leggi sul lavoro, un codice di condotta in materia di sicurezza e salute specifico per ogni settore, e l’implementazione di attività di prevenzione basate su evidenze scientifiche (103–106).
Infortuni nello sport e nelle attività ricreative La LM è stata riscontrata durante diverse attività sportive e ricreative. I meccanismi di LM in contesti sportivi e di ricreazione includono: ■ incidenti con veicoli, come le motociclette, moto, quad e auto da corsa; ■ cadute allo stesso livello, come nel rugby e mentre si scia; ■ cadere/inciampare/saltare da un’altezza minore di un metro, come tuffarsi in acque poco profonde (vedi Riquadro 3.5) e cadere da una bici a pedali per bambini; ■ cadere/inciampare/saltare/essere spinti da altezze maggiori di un metro, come ad esempio in arrampicata, parapendio, cadute dal cavallo o da bici a pedali per adulti, o cadute dalle giostre. La ricerca dimostra che globalmente le lesioni sportive causano fra il 7% ed il 18% di tutte le LM (119–121). La prevenzione di lesioni midollari nel rugby rappresenta un esempio convincente di prevenzione che è stata implementata con successo nel contesto di un grande sport di squadra (vedi Riquadro 3.6).
Attività, luoghi e circostanze associate alla lesione midollare Infortuni sul lavoro Una proporzione significativa di incidenti che esitano in LM avvengono sul luogo di lavoro (95,96), in particolare nelle industrie edili, agricole e minerarie (95,96). Le cause esterne più frequenti negli ambienti di lavoro sono le cadute dall’alto e l’essere colpiti o schiacciati da un oggetto che cade (96). Lesioni midollari e altri tipi importanti di lesioni spesso avvengono sottoterra in contesto minerario, dove il luogo principale di lavoro è un tunnel orizzontale mentre l’accesso nella terra è verticale o inclinato. Mentre nei paesi ad alto reddito il lavoro minerario è spesso ben organizzato ed altamente regolamentato (97–99), nei paesi a basso reddito dove c’è povertà, alta disoccupazione, scarsa implementazione delle leggi e corruzione le prassi minerarie possono essere poco sicure. Ad esempio, in Africa si sta verificando un aumento nel numero di operazioni
57
Prospettive Internazionali sulla lesione del midollo spinale
Riquadro 3.4 Prevenire decessi e lesioni associati con il lavoro minerario in Sud Africa In Sud Africa, la disponibilità di dati sui decessi e sugli incidenti in miniera ha reso possibile misurare i risultati prodotti dai programmi di prevenzione infortuni, identificare le tappe, e stabilire i futuri obiettivi di prevenzione. Questo approccio sistematico della sanità pubblica utilizzato dal Governo includeva:
■■ Disponibilità di dati sull’entità del problema: ovvero il numero di decessi e incidenti in miniera, ad esempio in relazione al luogo della miniera ed il tipo (oro, carbone, etc);
■■ Identificazione dei pericoli: geologici, idro-geologici, sismologici ed evacuazione per la caduta di rocce; ■■ L’analisi del rischio e la valutazione: inclusa l’identificazione per ogni pericolo di come le persone vengono esposte, la probabilità e la frequenza di esposizione e le possibili conseguenze (compresi infortuni gravi come la LM), la valutazione del rischio comprendente la determinazione del livello di rischio e la classificazione in ordine di gravità; Identificazione dei fattori protettivi: quelle azioni che possono eliminare o ridurre il rischio; Progettare ed implementare interventi di controllo del rischio: ad es. modifica dell’ambiente di lavoro, progettazione di attrezzature, istituzione di nuove regole per ridurre l’esposizione al rischio, e disponibilità di informazioni ed educazione del personale, ad esempio, sulle ispezioni e sui controlli di sicurezza; Rafforzare le disposizioni legislative e indagare sui reati Monitorare e revisionare: per assicurare che il cambiamento delle circostanze non alterino l’efficacia delle misure di sicurezza.
■■ ■■ ■■ ■■
Fatalità e lesioni dovute al collasso del tetto (2003–2011) nelle miniere del Sud Africa (RSA) Tassi di fatalità e lesioni (per millione di ore lavorate)
1,6 1,4 1,2 1,0 0,8 0,6 0,4 0,2 0 0,14 0,15 0,13 1,41 1,34 1,23
Tassi di fatalità RSA 1,25 1,10 1,11 1,12 1,02
Tassi di lesione RSA
Lineare (tassi di lesione RSA)
1,00 0,95
0,96
0,87
0,85 0,78 0,67 0,7 0,64 0,65 0,72 0,68 0,64
0,09
0,08
0,07
0,06
0,05 0,04
0,05 0,05 0,05 0,05 0,04
0,04
Gennaio 2003
Gennaio 2004
Gennaio 2005
Gennaio 2006
Gennaio 2007
Gennaio 2008
Gennaio 2009
Gennaio 2010
Gennaio 2011
Fonti: Riproduzione da (102) con autorizzazione della Repubblica Sud Africana, Dipartimento delle Risorse Minerarie.
Come risultato di questi processi, ci sono state significative riduzioni sia nelle lesioni fatali che in quelle gravi sul luogo di lavoro nell’industria mineraria in Sud Africa. La figura in basso mostra la caduta nel tasso di fatalità dal collasso dei tetti in miniera – la causa maggiore di lesioni – da 0,14 per milione di ore di lavoro nel gennaio 2003 a 0,05 per milione di ore nel 2011. Lesioni provocate dalla stessa causa sono diminuite del 51% da 1,41 per milione di ore nel 2003 a 0,72 per milione di ore nel gennaio 2011.
58
Capitolo 3 Prevenzione della lesione midollare
Riquadro 3.5 Tuffarsi può causare la lesione midollare La LM cervicale – spesso a livello neurologico C4 con conseguente tetraplegia – è la forma più comune di LM legata alle immersioni (107–109). Questo tipo di lesione da tuffo viene riscontrata nella maggior parte dei casi negli uomini sotto i 35 anni (110–112). I fattori associati alla LM legata ai tuffi includono la mancanza di consapevolezza e conoscenza, il tuffarsi in acque poco profonde (1,5 m o meno), la scarsità degli indicatori di profondità e di regolamenti di sicurezza, le caratteristiche della pendenza dei fondali nelle piscine, ed il consumo di alcol (111,113,114). Per esempio, il 63% di LM nelle piscine interrate in Canada sono state causate dall’urto del tuffatore sul fondale in pendenza che unisce la parte poco profonda a quella profonda della piscina (111). Piscine progettate correttamente con le caratteristiche di design appropriate possono ridurre il rischio di LM. I responsabili delle piscine olimpioniche che hanno l’obbligo di profondità minima di 2,7 m d’acqua al di sotto del trampolino, non hanno segnalato alcun incidente di LM legato all’ immersione (114). Nel 2010, la Federazione Internazionale di Nuoto ha introdotto nuovi minimi di profondità di 3,2 m per una piattaforma da 1 m, e 5 m per una piattaforma da 10 m nelle strutture olimpioniche con tuffo da trampolino (115). La ricerca in Australia mostra che la formazione (sette sessioni da 10 minuti) che insegna le condizioni idonee per tuffarsi (ad es. sapere che la profondità dell’acqua è maggiore di tre metri, assenza di oggetti nell’acqua, non tuffarsi in piscine non interrate) e le posizioni di tuffo (unire i pollici, estendere le braccia oltre la testa, e avere le capacità di rotazione e scivolamento) sono efficaci nel ridurre la profondità del tuffo e nel creare posizioni più sicure per le mani e per le braccia (116). I controlli effettuati successivamente ai programmi di formazione per i tuffi hanno dimostrato che i partecipanti hanno recepito le informazioni e le immersioni hanno continuato ad essere meno profonde anche dopo 20 mesi dall’invio del programma di formazione (117,118). I settori chiave che hanno bisogno di essere migliorati per ridurre la quantità di LM legate ai tuffi (111,114) includono i seguenti:
■■ Si dovrebbero stabilire ed applicare parametri nazionali ed internazionali di progettazione basati su prove scientifiche per le piscine pubbliche e private per promuovere la sicurezza nei tuffi.
■■ Venditori e acquirenti di piscine domestiche dovrebbero essere educati sulla sicurezza nelle piscine, sottolineando la pericolosità dei tuffi a capofitto in acque poco profonde.
■■ Bisognerebbe arrivare agli individui a rischio nelle scuole e nelle comunità attraverso una formazione completa e fondata sulle prove di evidenza per la sicurezza in acqua.
Come molti interventi formativi, il grado di efficacia rimane una questione da discutere e su cui continuare le ricerche. Le strategie di prevenzione includono la minimizzazione del rischio attraverso requisiti standardizzati, la formazione, e l’emanazione e l’applicazione di leggi e normative adeguate. Una panoramica degli approcci di prevenzione per diversi sport è mostrata in Tabella 3.5.
Come la maggior parte degli interventi educativi, il grado di efficacia rimane una questione aperta di discussione e continua ricerca. Le strategie di prevenzione comprendono la minimizzazione dei rischi attraverso raccomandazioni standardizzate, formazione, promozione e rinforzo di appropriate leggi e standard. Una revisione degli approcci di prevenzione per diversi tipi di sport è illustrata nella tabella 3.5.
59
Prospettive Internazionali sulla lesione del midollo spinale
Riquadro 3.6 Nuova Zelanda spiana la strada nella prevenzione di lesione midollare legata al rugby Il rugby è uno sport di squadra ad alto contatto. Dalla metà degli anni novanta, nelle nazioni che giocano a rugby come la Nuova Zelanda ed il Sud Africa, è cresciuta la consapevolezza che le lesioni gravi non fatali, come le LM, venivano riscontrate sul campo durante le partite. Di conseguenza sono stati raccolti i dati (sorveglianza degli infortuni) per quantificare il problema. Accident Compensation Commission (ACC) [Commissione Risarcimento Infortuni] e New Zealand Rugby Union [Sindacato del Rugby Nuova Zelanda] hanno collaborato “per eliminare lesioni spinali nel contesto di uno sport di contatto.” Uno studio sulle circostanze in cui si verificano le lesioni ha identificato i seguenti rischi:
■■ fasi del gioco ad alto rischio (la mischia, impatto fisico per possesso palla, la mischia ordinata/aperta); ■■ comportamenti e condizioni ad alto rischio, che includono lo scarso livello di forma fisica dei giocatori, gli impatti fisici fallosi con presa sul collo o mento, impatti fisici con il mento;
■■ il primo soccorso sul campo inadeguato (122). La frequenza di LM legata al rugby in Nuova Zelanda fra il 1976 ed il 2005 è raffigurata nella prima figura sottostante. In risposta a queste tendenze, nella Nuova Zelanda è iniziato un programma completo per la prevenzione chiamato RugbySmart. Include i seguenti interventi:
■■ workshop di sicurezza obbligatori per gli allenatori, arbitri e giocatori; ■■ seminari obbligatori in cui vengono fornite informazioni e documentazioni sulla sicurezza; un sito apposito; ■■ fornitura di strumenti per la prevenzione agli infortuni come i protocolli riguardanti il controllo forniti agli allenatori ed arbitri per effettuare una prima diagnosi di commozione celebrale a bordo campo. Tutti gli allenatori sono stati tenuti a completare il RugbySmart su base annua, ed il programma è stato distribuito a quasi il 100% degli allenatori e degli arbitri nel paese (123). L’introduzione di RugbySmart ha prodotto la riduzione della frequenza di LM, in quanto si sono verificati 8 casi di lesioni spinali fra il 2001 ed il 2005 mentre fra il 1996 ed il 2000 ce ne sono stati 17 (123). Come mostrato nella seconda figura sottostante questa frequenza ha continuato a rimanere bassa, con una media di due lesioni gravi l’anno negli 11 anni in cui è stato implementato il RugbySmart.
Frequenza di LM legata al rugby a seconda della fase ad alto rischio durante il gioco 20 Frequenza di LM legata al rugby (per un periodo di 4 anni) 18 16 14 12 10 8 6 4 2 0 1976–1980 1981–1985 1986–1990 1991–1995 1996–2000 Totale Impatto sico per possesso palla, mischia ordinata o aperta Mischia 2001–2005
Fonte: Riproduzione da (123) con autorizzazione da BMJ Publishing Group Ltd.
60
Capitolo 3 Prevenzione della lesione midollare
Riduzione di lesioni gravi legate al rugby nella Nuova Zelanda in seguito all’introduzione di RugbySmart Numero di lesioni celebrali traumatiche e di lesioni al midollo spinale all’anno 16 14 12 10 8 6 4 2 0 1998 1999 2000 2001 3 1 2002 2 2 2 2 1 2007 1 2008 2009 5 3 0 2010 2011 9 10 11
2003
2004
2005
2006
Implementazione del RugbySmart
Fonti: Adattato da (124) con autorizzazione da RugbySmart, pubblicato dal Sindacato Rugby Nuova Zelanda in associazione con Accident Compensation Corporation.
Questo approccio è stato anche adattato al contesto Sud Africano. È stato introdotto nel 2008 BokSmart da SA Rugby e da Players Fund. Ciò ha migliorato la formazione e la disponibilità del personale medico di supporto o di persone addestrate capaci di fornire primo soccorso su bordo campo e strumenti per prevenire il peggioramento degli infortuni che potrebbero verificarsi qualora l’assistenza immediata fosse scarsa. Altri cambiamenti comprendono i miglioramenti da parte degli allenatori e della selezione di politiche, cambiamenti delle regole del gioco (come le regole di ingaggio in mischia “piegamento, tocco, pausa, impegno”) e l’impiego di apparecchi di sicurezza (125). Come la maggior parte degli interventi educativi, il grado di efficacia rimane una questione aperta di discussione e continua ricerca. Le strategie di prevenzione comprendono la minimizzazione dei rischi attraverso raccomandazioni standardizzate, formazione, promozione e rinforzo di appropriate leggi e standard.
Tabella 3.5 Sintesi degli interventi per prevenire le lesioni midollari nelle attività sportive Sport Interventi che funzionano e dovrebbero essere implementati in tutto il mondo Formazione sulla sicurezza obbligatoria per gli allenatori e per gli arbitri (123) Promettenti, necessaria maggiore valutazione Inefficaci o dannosi, dovrebbero essere scoraggiati
Rugby
Sciare ed andare sullo snowboard
Equitazione
Regole per maggiore sicurezza durante le fasi ad alto rischio (122, 125) Educazione e formazione nelle misure di sicurezza, ad es. Codici di Responsabilità Alpina (126) Segnalare pericoli nelle piste da sci e fornire barriere attorno ai pericoli (126) Giubbotti di sicurezza (127) Legare i bambini alla sella
…continua
61
Prospettive Internazionali sulla lesione del midollo spinale
…seguito della pagina precedente Sport Interventi che funzionano e dovrebbero essere implementati in tutto il mondo Normative e applicazione di progetti per la sicurezza delle piscine, ad es. profondità, illuminazione, altezze ed elasticità del trampolino (114), divieto di consumo di alcol intorno ai luoghi di sport acquatici Standard dei campi per profondità appropriate dei materiali in superficie, altezza delle attrezzature e mantenimento (129) Accesso tempestivo alla camera di decompressione (130) Promettenti, necessaria maggiore valutazione Interventi educativi, istruzioni per immersioni (116–118, 128) Inefficaci o dannosi, dovrebbero essere scoraggiati
Tuffi
Sport all’aperto in generale
Immersioni in acque profonde
Calamità naturali Diversi fattori influenzano la misura in cui i terremoti ed altre calamità naturali, come le frane e le eruzioni vulcaniche, possono causare LM. Questi includono il tipo di edifici, il tempo in cui si verifica la calamità, e la densità della popolazione nell’area interessata (131,132). Persone che si trovano in edifici costruiti in pietra secca o in muratura non armata hanno al momento del terremoto un rischio maggiore di infortunio rispetto a coloro che sono in palazzi con strutture in legno (131). Se il terremoto si verifica quando la maggior parte delle persone si trova negli edifici ad alto rischio si ha una maggiore probabilità di riscontrare un numero più elevato di infortuni. Anche se le calamità naturali possono non essere facilmente preventivabili, si possono ridurre i crolli dei palazzi, ad esempio facendo applicare normative appropriate per gli edifici che assicurino l’isolamento sismico delle infrastrutture.
Conclusioni e raccomandazioni La LM è in gran parte prevedibile e prevenibile. Ricerche e sviluppi sostanziali degli ultimi 30 anni hanno dimostrato di aver introdotto interventi che riducono l’incidenza di LM dovuta a varie cause – incidenti stradali, cadute, violenza – e dovute ad attività come lavorare e praticare sport. Il divario tra ciò che è noto essere efficace e quanto viene effettivamente messo in pratica è considerevole. Nonostante i tentativi di trovare e documentare buoni esempi di programmi di prevenzione per LM, nei paesi a basso e medio reddito, gli esempi sono sempre pochi. Questo non significa che gli interventi presentati in questo capitolo non possano funzionare nei paesi a basso e medio reddito; al contrario, molti funzionano bene. Le strategie, tuttavia, hanno bisogno di essere sperimentate e adattate ai contesti ed alle condizioni del luogo. I governi e coloro che sono coinvolti nella prevenzione sono incoraggiati a considerare i seguenti settori di intervento: ■ Continuare ad investire nei programmi di prevenzione primaria che si sono dimostrati efficaci, prendendo in considerazione la LM
62
Capitolo 3 Prevenzione della lesione midollare
(ad es. richiedendo normative obbligatorie che specificano le altezze necessarie dei poggiatesta nei veicoli). Inoltre, implementare azioni specifiche per prevenire o controllare le LM durante attività come i lavori e gli sport ad alto rischio (ad es. programmi formativi per la prevenzioni degli infortuni nel rugby). ■ Rafforzare il sistema sanitario per identificare e curare le persone a rischio di LM non traumatica legata a malattie trasmissibili, a condizioni non trasmissibili e a carenze nutrizionali. ■ Aumentare la sensibilizzazione su come prevenire LM in modi che non fanno sentire sminuiti coloro che già hanno LM. ■ Definire le priorità per la ricerca sulla prevenzione di LM. Molti degli interventi di prevenzione ampiamente praticati non hanno alla base prove concrete (ad es. lezioni di immersione). L’analisi dei fattori di rischio e la valutazione degli interventi sono la chiave per determinare quali interventi sono efficaci
e quindi dovrebbero essere promossi e quali, invece, sono inefficaci o dannosi e dovrebbero essere scoraggiati. ■ Coinvolgere tutti i settori rilevanti e gli attori interessati. La prevenzione di LM coinvolge molteplici settori – come quelli delle infrastrutture, della salute, delle industrie, degli sport e dell’istruzione – per affrontare le diverse cause, attività o contesti associati alla LM. Un organismo deve assumere un ruolo guida per assicurare che l’implementazione venga effettuata e che i contributi provenienti dai vari settori siano diffusi e sostenuti. ■ Incoraggiare le agenzie incaricate a portare avanti i programmi sulla prevenzione per collaborare con i ricercatori in modo tale che i dati di incidenza possano influire sulle strategie di prevenzione ed i ricercatori riescano ad essere coinvolti nel monitoraggio e di conseguenza nella valutazione delle campagne di prevenzione.
Referenze Tharion G, Nagarajan G, Bhattacharji S, eds. Prevention of spinal cord injury. In: Guidelines for care of persons with spinal cord injury in the community. Vellore, Christian Medical College. 2009. 2. Shakespeare T. Still a health issue. Disability and Health Journal, 2012, 5:129-131. doi: http://dx.doi.org/10.1016/j.dhjo.2012.04.002 PMID:22726851 3. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012) 4. Wang CC. Portraying stigmatized conditions: disabling images in public health. Journal of Health Communication, 1998, 3:149-159. doi: http://dx.doi.org/10.1080/108107398127436 PMID:10977251 5. NSCISC. Annual report for the spinal cord injury model systems:2008 Birmingham, AL, National Spinal Cord Injury Statistical Centre, 2008 (https://www.nscisc.uab.edu/PublicDocuments/reports/pdf/2008%20NSCISC%20Annual%20Statistical%20Report%20 -%20Complete%20Public%20Version.pdf, accessed 9 April 2012). 6. Henley G. Spinal cord injury, 1999−2005. NISU briefing No. 14, Cat. No. INJCAT 124. Canberra, Australian Institute of Health and Welfare, 2009 (http://www.aihw.gov.au/publication-detail/?id=6442468241, accessed 9 April 2012). 7. Sekhon LH, Fehlings MG. Epidemiology, demographics, and pathophysiology of acute spinal cord injury. Spine, 2001, 26 Suppl:S2-S12. doi: http://dx.doi.org/10.1097/00007632-200112151-00002 PMID:11805601 8. Haddon W. Advances in the epidemiology of injuries as a basis for public health policy. Public Health Reports, 1980, 95:411-421. PMID:7422807 9. Peden M et al., eds. World report on road traffic injury prevention. Geneva, World Health Organization, 2004. 10. WHO. Global status report on road safety: time for action. Geneva, World Health Organization, 2009 (www.who.int/violence_ injury_prevention/road_safety_status/2009, accessed 9 April 2012). 11. Newton J. Road safety – Partnership programme. Shared responsibility. Western Australia, Office of Road Safety, 2008. 12. OECD. Towards zero. Ambitious road safety targets and the safe system approach. Paris, Organisation for Economic Co-operation and Development, 2008 (http://www.oecd-ilibrary.org/transport/towards-zero_9789282101964-en, accessed 5 May 2012). 1.
63
Prospettive Internazionali sulla lesione del midollo spinale
13. Rasouli MR. Preventing motor vehicle crashes related spine injuries in children. World Journal of Pediatrics, 2011, 7:311-317. doi: http://dx.doi.org/10.1007/s12519-011-0327-z PMID:22015724 14. Elvik R. Area-wide urban traffic calming schemes: a meta-analysis of safety effects. Accident; Analysis and Prevention, 2001, 33:327336. doi: http://dx.doi.org/10.1016/S0001-4575(00)00046-4 PMID:11235794 15. Mohan D, Tiwari G. Road safety in low-income countries: issues and concerns regarding technology transfer from high-income countries. In: Reflections on the transfer of traffic safety knowledge to motorising nations. Melbourne, Global Traffic Safety Trust, 1998:27–56. 16. O’Connor PJ, Brown D. Relative risk of spinal cord injury in road crashes involving seriously injured occupants of light passenger vehicles. Accident; Analysis and Prevention, 2006, 38:1081-1086. doi: http://dx.doi.org/10.1016/j.aap.2006.04.013 PMID:16756930 17. Haworth N et al. Characteristics of fatal single vehicle crashes. Report 120. Clayton, Monash University Accident Research Centre, 1997. 18. McElhaney JH et al. Biomechanical aspects of cervical trauma. In: Nahum AM, Melvin JW, eds. Accidental injury – biomechanics and prevention. 2nd ed. New York, NY, Springer-Verlag, 2002. 19. Viano DC, Chantal S, Parenteau CS. Analysis of head impacts causing neck compression injury. Traffic Injury Prevention, 2008, 9:144-152. doi: http://dx.doi.org/10.1080/15389580801894940 PMID:18398778 20. O’Neill B. Preventing passenger vehicle occupant injuries by vehicle design − a historical perspective from IIHS. Traffic Injury Prevention, 2009, 10:113-126. doi: http://dx.doi.org/10.1080/15389580802486225 PMID:19333823 21. MacLennan PA et al. Vehicle rollover risk and electronic stability control systems. Injury Prevention, 2008, 14:154-158. doi: http:// dx.doi.org/10.1136/ip.2007.016576 PMID:18523106 22. European Road Safety Observatory. eSafety. Brussels, European Commission, 2006 (http://ec.europa.eu/transport/wcm/road_ safety/erso/knowledge/Fixed/04_esave/esafety.pdf, accessed 21 March 2012). 23. Corben B et al. The general effectiveness of countermeasures for crashes into fixed roadside objects. Report 111. Clayton, Monash University Accident Research Centre, 1997. 24. Soloman L, Warwick D, Nayagam S. Apley’s system of orthopaedics and fractures, 8th ed. London, Arnold, 2001. 25. Viano DC. Seat design principles to reduce neck injuries in rear impacts. Traffic Injury Prevention, 2008, 9:552-560. doi: http:// dx.doi.org/10.1080/15389580802381939 PMID:19058102 26. Farmer CM et al. Relationship of dynamic seat ratings to real-world neck injury rates. Traffic Injury Prevention, 2008, 9:561-567. doi: http://dx.doi.org/10.1080/15389580802393041 PMID:19058103 27. Fitzharris M et al. Crash-based evaluation of Australian Design Rule 69: (Full FrontalIimpact Occupant Protection). Canberra, Australian Transport Safety Bureau, 2006 (http://www.infrastructure.gov.au/roads/safety/publications/2006/pdf/ Grant_Report200603.pdf?bcsi_scan_C7A381BA8BD8A412=0&bcsi_scan_filename=Grant_Report200603.pdf, accessed 21 March 2012). 28. Morris A, Welsh R, Frampton R. An overview of requirements for the crash protection of older drivers. Annu Proc Assoc Adv Automto Med, 2002, 46:141–156. 29. Ferguson SA, Schneider LW. An overview of frontal air bag performance with changes in frontal crash-test requirements: findings of the Blue Ribbon Panel for the evaluation of advanced technology air bags. Traffic Injury Prevention, 2008, 9:421-431. doi: http:// dx.doi.org/10.1080/15389580802046250 PMID:18836952 30. Lie A et al. Intelligent seat belt reminders − do they change driver seat belt use in Europe? Traffic Injury Prevention, 2008, 9:446449. doi: http://dx.doi.org/10.1080/15389580802149690 PMID:18836955 31. Winston FK, Durbin D. When “buckle up” is not enough: enhancing the safety of children in motor vehicles. Leonard Davis Institute Issue Brief, 2000, 5:1–4. 32. Achildi O, Betz RR, Grewal H. Lapbelt injuries and the seatbelt syndrome in pediatric spinal cord injury. The Journal of Spinal Cord Medicine, 2007, 30 Suppl. 1:S21-S24. PMID:17874682 33. Durbin DR et al. Effects of seating position and appropriate restraint use on the risk of injury to children in motor vehicle crashes. Pediatrics, 2005, 115:e305-e309. doi: http://dx.doi.org/10.1542/peds.2004-1522 PMID:15741356 34. Liu BC et al. Helmets for preventing injury in motorcycle riders. Cochrane database of systematic reviews, 2008, 23:CD004333. 35. Zaza S et al. Reviews of evidence regarding interventions to increase use of child safety seats. American Journal of Preventive Medicine, 2001, 21 Suppl:31-47. doi: http://dx.doi.org/10.1016/S0749-3797(01)00377-4 PMID:11691560 36. National Highway Traffic Safety Administration. Traffic safety facts 2004: occupant protection. Washington, DC, National Highway Traffic Safety Administration, 2004. 37. Ian R et al. School based driver education for the prevention of traffic crashes. Cochrane database of systematic reviews, 2001, 3:CD003201. PMID:11687049
64
Capitolo 3 Prevenzione della lesione midollare
38. Dellinger A et al. Interventions to prevent motor vehicle injuries. In: Doll L et al., eds. Handbook of injury and violence prevention. New York, NY, Springer, 2007:55–79. 39. Cummings P et al. Air bags and passenger fatality according to passenger age and restraint use. Epidemiology (Cambridge, Mass.), 2002, 13:525-532. doi: http://dx.doi.org/10.1097/00001648-200209000-00007 PMID:12192221 40. Passmore JW et al. The formulation and implementation of a national helmet law: a case study from Viet Nam. Bulletin of the World Health Organization, 2010, 88:783-787. doi: http://dx.doi.org/10.2471/BLT.09.071662 PMID:20931064 41. Elvik R, Vaa T, eds. The handbook of road safety measures. Amsterdam, Elsevier Science Ltd, 2004. 42. Bunn F et al. Area-wide traffic calming for preventing traffic related injuries. Cochrane database of systematic reviews, 2003, 1:CD003110. PMID:12535454 43. Hedlund J, Compton R. Graduated driver licensing research in 2004 and 2005. Journal of Safety Research, 2005, 36:109-119. doi: http://dx.doi.org/10.1016/j.jsr.2005.02.001 PMID:15896351 44. Stevenson M et al. Reducing the burden of road traffic injury: translating high-income country interventions to middle-income and low-income countries. Injury Prevention, 2008, 14:284-289. doi: http://dx.doi.org/10.1136/ip.2008.018820 PMID:18836043 45. Hoque MF, Grangeon C, Reed K. Spinal cord lesions in Bangladesh: an epidemiological study 1994−1995. Spinal Cord, 1999, 37:858-861. doi: http://dx.doi.org/10.1038/sj.sc.3100938 PMID:10602529 46. Jumah KB, Nyame PK. Relationship between load carrying on the head and cervical spondylosis in Ghanaians. West African Journal of Medicine, 1994, 13:181-182. PMID:7841112 47. Jäger HJ et al. Degenerative changes in the cervical spine and load-carrying on the head. Skeletal Radiology, 1997, 26:475-481. doi: http://dx.doi.org/10.1007/s002560050269 PMID:9297752 48. Demura S et al. Selection of useful items for fall risk screening for community dwelling Japanese elderly from the perspective of fall experience, physical function, and age level differences. Archives of Gerontology and Geriatrics, 2011, 53:123-130. doi: http:// dx.doi.org/10.1016/j.archger.2010.11.012 PMID:21131069 49. Spiegel CN, Lindaman FC. Children can’t fly: a program to prevent childhood morbidity and mortality from window falls. American Journal of Public Health, 1977, 67:1143-1147. doi: http://dx.doi.org/10.2105/AJPH.67.12.1143 PMID:596496 50. Barlow B et al. Ten years of experience with falls from a height in children. Journal of Pediatric Surgery, 1983, 18:509-511. doi: http://dx.doi.org/10.1016/S0022-3468(83)80210-3 PMID:6620098 51. Peden M et al., eds. World report on child injury prevention. Geneva, World Health Organization, 2008. 52. Cripps RA et al. A global map for traumatic spinal cord injury epidemiology: towards a living data repository for injury prevention. Spinal Cord, 2011, 49:493-501. doi: http://dx.doi.org/10.1038/sc.2010.146 PMID:21102572 53. Krug E et al., eds. World report on violence and health. Geneva, World Health Organization, 2002. 54. Zeilig G et al. Civilian spinal cord injuries due to terror explosions. Spinal Cord, 2010, 48:814-818. doi: http://dx.doi.org/10.1038/ sc.2010.22 PMID:20309003 55. WHO. Guns, knives, and pesticides: reducing access to lethal means. Geneva, World Health Organization, 2009. 56. Wee JYM, Schwarz R. An international comparative study assessing impairment, activities, and participation in spinal cord injury rehabilitation – a pilot study. Asia Pacific Disability Rehabilitation Journal, 2004, 15:42-52. 57. Staudinger R, Henry K. Remission of HIV myelopathy after highly active antiretroviral therapy. Neurology, 2000, 54:267-268. doi: http://dx.doi.org/10.1212/WNL.54.1.267 PMID:10636172 58. Jutte PC, van Loenhout-Rooyackers JH. Routine surgery in addition to chemotherapy for treating spinal tuberculosis. Cochrane Database of Systematic Reviews, 2006, 25:CD004532. CD004532.pub2 59. WHO/FAO/UNICEF/GAIN/MI/ FFI. Recommendations on wheat and maize flour fortification. Meeting Report: Interim Consensus Statement. Geneva, World Health Organization, 2009 (http://www.who.int/nutrition/publications/micronutrients/wheat_maize_ fort.pdf accessed 28 May 2012). 60. De-Regil LM, Fernández-Gaxiola AC, Dowswell T, Peña-Rosas JP. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database of Systematic Reviews, 2010, 6:(10)CD007950. Review. PubMed PMID: 20927767 PMID:20927767 61. Toriello HV. Policy and Practice Guideline Committee of the American College of Medical Genetics. Policy statement on folic acid and neural tube defects. Genetics in Medicine, 2011, 13:593-596. doi: http://dx.doi.org/10.1097/GIM.0b013e31821d4188 PMID:21552133 62. Fernández-Gaxiola AC, De-Regil LM. Intermittent iron supplementation for reducing anaemia and its associated impairments in menstruating women. Cochrane Database of Systematic Reviews, 2011, 7:(12)CD009218. Review. PubMed PMID: 22161448 PMID:22161448 63. WHO. Guideline: Intermittent iron and folic acid supplementation in menstruating women. Geneva, World Health Organization, 2011.
65
Prospettive Internazionali sulla lesione del midollo spinale
64. Godlwana L et al. Incidence and profile of spinal tuberculosis in patients at the only public hospital admitting such patients in KwaZulu-Natal. Spinal Cord, 2008, 46:372-374. doi: http://dx.doi.org/10.1038/sj.sc.3102150 PMID:18317491 65. Moon MS. Tuberculosis of the spine. Controversies and a new challenge. Spine, 1997, 22:1791-1797. doi: http://dx.doi. org/10.1097/00007632-199708010-00022 PMID:9259793 66. Dye C, Williams BG. The population dynamics and control of tuberculosis. Science, 2010, 328:856-861. doi: http://dx.doi. org/10.1126/science.1185449 PMID:20466923 67. Chaudhary M et al. Diagnosis of tuberculosis in an era of HIV pandemic: a review of current status and future prospects. Indian Journal of Medical Microbiology, 2010, 28:281-289. doi: http://dx.doi.org/10.4103/0255-0857.71805 PMID:20966555 68. Rasit AH, Razak M, Ting FS. The pattern of spinal tuberculosis in Sarawak General Hospital. The Medical Journal of Malaysia, 2001, 56:143-150. PMID:11771073 69. Harries AD et al. The HIV-associated tuberculosis epidemic − when will we act? Lancet, 2010, 375:1906-1919. doi: http://dx.doi. org/10.1016/S0140-6736(10)60409-6 PMID:20488516 70. Cormican L et al. Current difficulties in the diagnosis and management of spinal tuberculosis. Postgraduate Medical Journal, 2006, 82:46-51. doi: http://dx.doi.org/10.1136/pgmj.2005.032862 PMID:16397080 71. Maccauro G et al. Physiopathology of spine metastasis − review article. International Journal of Surgical Oncology, 2011,Article ID:107969, 8 pages doi: http://dx.doi.org/10.1155/2011/107969 PMID:22312491 72. George R et al. Interventions for the treatment of metastatic extradural spinal cord compression in adults. Cochrane Database of Systematic Reviews, 2008, 4:CD006716. CD006716.pub2 PMID:18843728 73. Molina CA, Gokaslan Z, Sciubba D. A systematic review of the current role of minimally invasive spine surgery in the management of metastatic spine disease. International Journal of Surgical Oncology, 2011, doi: http://dx.doi.org/10.1155/2011/598148 PMID:22312514 74. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 75. Nikkilä A, Rydhstrom H, Källén B. The incidence of spina bifida in Sweden 1973–2003: the effect of prenatal diagnosis. European Journal of Public Health, 2006, 16:660-662. doi: http://dx.doi.org/10.1093/eurpub/ckl053 PMID:16672253 76. Orioli IM et al. Effects of folic acid fortification on spina bifida prevalence in Brazil. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:831-835. doi: http://dx.doi.org/10.1002/bdra.20830 PMID:21630426 77. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 78. Centers for Disease Control and Prevention. Recommendations for the use of folic acid to reduce the number of cases of spina bifida and other neural tube defects. MMWR. Morbidity and Mortality Weekly Report, 1992, 41(RR-14):1-7. 79. Crider KS, Bailey L, Berry R. Folic acid food fortification – its history, effect, concerns, and future directions. Nutrients, 2011, 3:370-384. 80. Ray JG et al. Association of neural tube defects and folic acid food fortification in Canada. Lancet, 2002, 360:2047-2048. doi: http://dx.doi.org/10.1016/S0140-6736(02)11994-5 PMID:12504403 81. Flour Fortification Initiative website (http://www.ffinetwork.org/country_profiles/index.php, accessed 17 May 2013). 82. Cornel MC, de Smit DJ, de Jong-van den Berg LTW. Folic acid – the scientific debate as a base for public policy. Reproductive Toxicology (Elmsford, NY), 2005, 20:411-415. doi: http://dx.doi.org/10.1016/j.reprotox.2005.03.015 PMID:15978774 83. Centers for Disease Control and Prevention. Racial/ethnic differences in the birth prevalence of spina bifida – United States, 1995–2005. MMWR. Morbidity and Mortality Weekly Report, 2009, 57:1409-1413. PMID:19129744 84. Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 85. Barboza Argüello ML, Umaña Solís LM. Impact of the fortification of food with folic acid on neural tube defects in Costa Rica. Revista Panamericana de Salud Pública, 2011, 30:1-6. PMID:22159644 86. De Wals P et al. Reduction in neural-tube defects after folic acid fortification in Canada. The New England Journal of Medicine, 2007, 357:135-142. doi: http://dx.doi.org/10.1056/NEJMoa067103 PMID:17625125 87. López-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. [– Chile]. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi. org/10.1002/ajmg.a.33479 PMID:20814949 88. López-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. [– Argentina]. American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http:// dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949
66
Capitolo 3 Prevenzione della lesione midollare
89. Sayed AR et al. Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2008, 82:211-216. doi: http://dx.doi.org/10.1002/ bdra.20442 PMID:18338391 90. Persad VL et al. Incidence of open neural tube defects in Nova Scotia after folic acid fortification. Canadian Medical Association Journal, 2002, 167:241-245. PMID:12186168 91. Flour Fortification Initiative. FFI Database. Atlanta, 2012 (http://www.sph.emory.edu/wheatflour/globalmap.php, accessed 28 may 2012). 92. Williams LJ et al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995–2002. Pediatrics, 2005, 116:580-586. doi: http://dx.doi.org/10.1542/peds.2005-0592 PMID:16140696 93. Berry RJ, Bailey L, Mulinare J, Bower C. Folic Acid Working Group. Fortification of flour with folic acid. Food and Nutrition Bulletin, 2010, 31:(1 Suppl)S22-35. Review. PubMed PMID: 20629350 PMID:20629350 94. Rofail D et al. Factors contributing to the success of folic acid public health campaigns. Journal of Public Health, 2012, 34:90-99. doi: http://dx.doi.org/10.1093/pubmed/fdr048 PMID:21727078 95. O’Connor P. Work related spinal cord injury, Australia 1986–1997. Injury Prevention, 2001, 7:29-34. doi: http://dx.doi.org/10.1136/ ip.7.1.29 PMID:11289531 96. Correa GI et al. Work-related traumatic spinal cord lesions in Chile, a 20-year epidemiological analysis. Spinal Cord, 2011, 49:196199. doi: http://dx.doi.org/10.1038/sc.2010.71 PMID:20548320 97. Sanmiquel L et al. Analysis of work related accidents in the Spanish mining sector from 1982−2006. Journal of Safety Research, 2010, 41:1-7. doi: http://dx.doi.org/10.1016/j.jsr.2009.09.008 PMID:20226944 98. Hodous TK, Layne LA. Injuries in the mining industry. Occupational Medicine, 1993, 8:171-184. PMID:8456346 99. Boden LI. Government regulation of occupational safety: underground coal mine accidents 1973−75. American Journal of Public Health, 1985, 75:497-501. doi: http://dx.doi.org/10.2105/AJPH.75.5.497 PMID:3985237 100. ILO. Social and labour issues in small-scale mines, Geneva, International Labour Organization, 1999, (http://www.ilo.org/public/ english/dialogue/sector/techmeet/tmssm99/tmssmr.htm, accessed 5 October 2012) 101. ILO. Accelerating action against child labour. Report of the Director-General, International Labour Conference, 99th session, 2010, Geneva, International Labour Organization (http://www.ilo.org/global/resources/WCMS_126752/lang--en/index.htm, accessed 5 October 2012). 102. Department of Mineral Resources. 2003–2011 Falls of ground. Pretoria, Republic of South Africa, Department of Mineral Resources, 2011 (http://www.dmr.gov.za/publications/summary/134-2003 — 2011/410-2003-2011falls-of-groundaccidentsgraph.html, accessed 15 March 2012). 103. ILO. Code of practice on safety and health in underground coalmines. Meeting of Experts on Safety and Health in Coal Mines, Geneva, 8−13 May 2006. Geneva, International Labour Organization, 2006. 104. ILO. Code of practice on safety and health in agriculture. Meeting of Experts to Adopt a Code of Practice on Safety and Health in Agriculture, Geneva, 25−29 October 2010. Geneva, International Labour Organization, 2010. 105. Stout NA, Linn HI. Occupational injury prevention research: progress and priorities. Injury Prevention, 2002, 8 Suppl 4:IV9-IV14. doi: http://dx.doi.org/10.1136/ip.8.suppl_4.iv9 PMID:12460949 106. Litchfield MH. Agricultural work related injury and ill-health and the economic cost. Environmental Science and Pollution Research International, 1999, 6:175-182. doi: http://dx.doi.org/10.1007/BF02987623 PMID:19009396 107. Amorim EC et al. Spine trauma due to diving: main features and short-term neurological outcomes. Spinal Cord, 2011, 49:206-210. doi: http://dx.doi.org/10.1038/sc.2010.79 PMID:20625383 108. Vlok AJ et al. Shallow-water spinal injuries − devastating but preventable. South African Medical Journal, 2010, 100:682-684. PMID:21081000 109. Ye C et al. Pattern of sports- and recreation-related spinal cord injuries in Beijing. Spinal Cord, 2009, 47:857-860. doi: http://dx.doi. org/10.1038/sc.2009.49 PMID:19436265 110. Aito S, D’Andrea M, Werhagen L. Spinal cord injuries due to diving accidents. Spinal Cord, 2005, 43:109-116. doi: http://dx.doi. org/10.1038/sj.sc.3101695 PMID:15558081 111. Barss P et al. Risk factors and prevention for spinal cord injury from diving in swimming pools and natural sites in Quebec, Canada: a 44-year study. Accident; Analysis and Prevention, 2008, 40:787-797. doi: http://dx.doi.org/10.1016/j.aap.2007.09.017 PMID:18329434 112. Korres DS et al. Diving injuries of the cervical spine in amateur divers. The Spine Journal, 2006, 6:44-49. doi: http://dx.doi. org/10.1016/j.spinee.2005.06.013 PMID:16413447 113. WHO. Guidelines for safe recreational water environments. Volume 2: Swimming pools and similar environments. Geneva, World Health Organization, 2006.
67
Prospettive Internazionali sulla lesione del midollo spinale
114. Cusimano MD, Mascarenhas AM, Manoranjan B. Spinal cord injuries due to diving: a framework and call for prevention. The Journal of Trauma, 2008, 65:1180-1185. doi: http://dx.doi.org/10.1097/TA.0b013e3181826e09 PMID:19001991 115. FINA. Facilities rules, No. 5: Diving Facilities. Lausanne, Fédération Internationale de Natation (International Swimming Federation), 2010 (http://www.fina.org/H2O/index.php?option=com_content&view=article&id=368:fr-5-diving-facilities&catid=88:facilitiesrules&Itemid=184, accessed 14 March 2012). 116. Blitvich JD, McElroy GK, Blanksby BA. Risk reduction in diving spinal cord injury: teaching safe diving skills. Journal of Science and Medicine in Sport, 2000, 3:120-131. doi: http://dx.doi.org/10.1016/S1440-2440(00)80074-2 PMID:11104304 117. Blitvich JD et al. Retention of safe diving skills. Journal of Science and Medicine in Sport, 2003, 6:155-165. doi: http://dx.doi. org/10.1016/S1440-2440(03)80251-7 PMID:12945622 118. Blitvich JD et al. Long term retention of safe diving skills. Journal of Science and Medicine in Sport, 2003, 6:348-354. doi: http:// dx.doi.org/10.1016/S1440-2440(03)80029-4 PMID:14609152 119. Knútsdóttir S et al. Epidemiology of traumatic spinal cord injuries in Iceland from 1975 to 2009. Spinal Cord, 2012, 50:123-126. doi: http://dx.doi.org/10.1038/sc.2011.105 PMID:21946442 120. Furlan JC et al. Assessment of disability in patients with acute traumatic spinal cord injury: a systematic review of the literature. Journal of Neurotrauma, 2011, 28:1413-1430. doi: http://dx.doi.org/10.1089/neu.2009.1148 PMID:20367251 121. Boran S et al. A 10-year review of sports-related spinal injuries. Irish Journal of Medical Science, 2011, 180:859-863. doi: http:// dx.doi.org/10.1007/s11845-011-0730-4 PMID:21792709 122. NZRU. RugbySmart. Wellington, New Zealand Rugby Union (http://www.nzrugby.co.nz/the_game/safety/rugbysmart, accessed 9 April 2012). 123. Quarrie KL et al. Effect of nationwide injury prevention programme on serious spinal injuries in New Zealand rugby union: ecological study. British Medical Journal, 2007, 334:1150. doi: http://dx.doi.org/10.1136/bmj.39185.605914.AE PMID:17513314 124. NZRU/ACC. RugbySmart DVD. New Zealand Rugby Union in conjunction with Accident Compensation Corporation, 2012. 125. BokSmart. Winners play smart rugby. Cape Town, The BokSmart National Rugby Safety Program, 2009 (http://www.sarugby. co.za/boksmart/, accessed 9 April 2012). 126. Ackery A et al. An international review of head and spinal cord injuries in alpine skiing and snowboarding. Injury Prevention, 2007, 13:368-375. doi: http://dx.doi.org/10.1136/ip.2007.017285 PMID:18056311 127. Hessler C et al. Spine injuries due to horse riding accidents – an analysis of 30 cases [article in German]Sportverletzung Sportschaden, 2011, 25:93-96. doi: http://dx.doi.org/10.1055/s-0029-1245831 PMID:21611912 128. Bhide VM, Edmonds V, Tator C. Prevention of spinal cord injuries caused by diving: evaluation of the distribution and usage of a diving safety video in high schools. Injury Prevention, 2000, 6:154-156. doi: http://dx.doi.org/10.1136/ip.6.2.154 PMID:10875676 129. WHO/UNICEF. World report on child injury prevention. Geneva, World Health Organization and United Nations Children’s Fund, 2008. 130. Louge P et al. Current management of diving-related spinal cord decompression sickness in 2010 [article in French]. La Presse Medicale, 2010, 39:778-785. doi: http://dx.doi.org/10.1016/j.lpm.2010.02.049 PMID:20466511 131. PAHO. Natural disasters – protecting the public’s health. Washington, DC, Pan American Health Organization, 2000. 132. PAHO. Earthquake in Haiti: PAHO/WHO situation report on health activities post earthquake. Pan American Health Organization, 2010 (http://reliefweb.int/sites/reliefweb.int/files/resources/Full_Report_3342.pdf, accessed 5 May 2012).
68
Capitolo 4 Sistema sanitario e bisogni riabilitativi
“All’età di 15 anni mi hanno diagnosticato una leucemia linfoblastica acuta ed altre complicanze. Dopo il mio sedicesimo compleanno, passato in ospedale, ho sviluppato una paraplegia rapidamente progressiva con livello sensoriale T6 e vescica ed intestino neurologici. La causa della paraplegia rimane non chiara, ma la spiegazione più plausibile rimane una reazione avversa alla chemioterapia. Nel luglio del 1990, dopo l’assistenza sanitaria domiciliare e proseguendo la remissione completa della LM, mi sentivo sufficientemente bene per cominciare la riabilitazione presso l’unità spinale. La vita nell’unità spinale era difficile. Come paziente giovane e di sesso femminile non avevo pari della mia età o di genere con cui parlare. Il mio forte desiderio di lasciare l’ospedale mi spingeva a lavorare sodo ed a imparare a vivere in carrozzina. Dopo tre mesi ero in grado di tornare a casa ed iniziare a vivere in modo più indipendente.” (Anne, Australia) “Mi sono risvegliata in terapia intensiva di fronte ad un uomo, un dottore, la cui faccia, ricoperta dalla barba, era vicina alla mia. In modo quasi minaccioso ma assoluto mi disse: “Lo sai, vero, che non camminerai mai più”. L’ho guardato perplessa ed incredula. Voleva una risposta che confermasse la mia consapevolezza – ma ero scioccata e incredibilmente non sapevo nulla di lesione midollare. Non sapevo assolutamente di che cosa si trattasse, e anche se lo avessi saputo, non avrei comunque creduto che potessero darmi la prognosi in quel momento perché non ero pronta ad accettarla. Era troppo presto per sentire una sentenza del genere...” (Joanna, Nuova Zelanda) “Siamo tutti incoraggiati a fare ginnastica ogni giorno, ma perché la lesione midollare ci renderebbe diversi da tutti gli altri? Trovo che cercare di allenarsi attivamente aiuta a prevenire molte potenziali complicanze che potrebbero colpirmi ed a mantenere la mia mente e corpo per oggi e per il futuro. Uscire in giardino o in spiaggia con mia moglie ed i nostri bambini nella mia carrozzina che controllo con il mento è il mio allenamento preferito.” (Brad, Australia) “Ho ricevuto terapie giornaliere, che sono state di grande sollievo. Le infermiere erano adorabili, soprattutto quella che mi ha insegnato a prendermi cura della vescica e dell’intestino (ricordo ancora oggi che fino a quel momento avevo ancora un catetere a permanenza). Mi hanno dovuto mettere in un letto molto alto per ridurre le scosse provocate ogni volta che qualcuno si avvicinava o toccava il mio letto. Lentamente ho imparato le tecniche per aiutarmi a fare il bagno, trasferirmi dal letto alla carrozzina, e muovermi in carrozzina. Le barriere fra i residenti dell’unità spinale sono state eliminate velocemente quando i pantaloni di coloro che osavano alzarsi in piedi cadevano alle caviglie e tutti ridevamo fino a quando non c’era più niente da ridere.” (Angela, Uganda) “Mi sono venuti i calcoli alla vescica due anni dopo la dimissione dall’ospedale, e poi sono stato ricoverato per l’intervento chirurgico. L’ ulcera da pressione riappariva sempre sulle mie anche, ogni volta che c’era un ritardo nel girarmi. Ora faccio abbastanza attenzione alla prevenzione delle lesioni da pressione e delle infezioni dell’apparato urinario sotto la guida dei riabilitatori. Cercherò di mantenermi in buona salute, ma non posso fare promesse.” (Chen, Cina)
4
Sistema sanitario e bisogni riabilitativi Sia se di origine traumatica che non traumatica, la lesione midollare (LM) è una condizione di salute molto significativa. Mentre la LM sarà sempre una condizione che cambia la vita, non deve limitare le possibilità di una vita soddisfacente e piena per gli individui. L’impatto sociale della LM non dipende necessariamente dalla gravità o dal livello della lesione, ma da fattori sociali ed ambientali, in particolare dalla disponibilità di un sistema sanitario appropriato ed accessibile. Con il trattamento corretto, la LM non deve essere una condizione terminale, e non deve impedire a nessuno di ricevere un’educazione, di trovare lavoro, di avere una famiglia e una vita produttiva e di successo. Mentre i capitoli successivi esplorano altre barriere e facilitatori sociali, questo capitolo si concentra sull’assistenza sanitaria e sulla riabilitazione includendo le tecnologie di supporto. La Convenzione delle Nazioni Unite sui diritti delle persone con disabilità (CRPD) stabilisce che le persone con disabilità hanno il diritto di godere del miglior stato di salute possibile nell’articolo 25, di usufruire della riabilitazione (includendo le tecnologie di supporto) nell’articolo 26, e della mobilità personale (includendo le tecnologie di supporto) nell’Articolo 20 (1). Questo capitolo analizza l’impatto che la LM può avere sulla salute dell’individuo, le complicanze che possono verificarsi e come queste possono essere gestite durante le tre fasi principali di erogazione dell’assistenza sanitaria, ossia: ■ pre-ospedalizzazione e assistenza in fase acuta – il bisogno di assicurare la sopravvivenza immediata e la stabilizzazione. Senza l’intervento iniziale corretto, la LM può mettere la vita in pericolo e compromettere la possibilità di futura ripresa funzionale e indipendenza. ■ assistenza sanitaria post-acuta e servizi di riabilitazione – per assicurare che la ripresa funzionale sia massima e che l’individuo possa essere il più indipendente possibile per poter riprendere il percorso educativo o lavorativo. Ausili appropriati sono una componente fondamentale in questo percorso. Senza l’accesso alla riabilitazione ed agli ausili, la persona con LM ha poche speranze di partecipare nella società. ■ mantenimento dello stato di salute – così l’individuo può evitare o sopravvivere alle complicanze della LM, come le infezioni del tratto urinario, le ulcere da pressione e le lesioni da sovraccarico funzionale, rimanendo sano e godendo di una vita lunga. Senza l’accesso all’assistenza sanitaria di base, una persona con LM è più esposta al rischio di morte prematura. 71
Prospettive Internazionali sulla lesione del midollo spinale
Le restrizioni di spazio comportano che questo capitolo non possa trattare tutti i bisogni sanitari delle persone con LM. L’obiettivo è quello di informare i politici ed i dirigenti dei servizi sulle potenziali complicanze della LM e sui servizi principali che sono necessari nelle tre fasi di assistenza.
Comprensione dell’impatto della lesione midollare sulla salute Il danno neurologico causato dalla LM sia traumatica che non traumatica impedisce alle informazioni sensoriali e motorie di viaggiare dal cervello al midollo sotto il livello di lesione e viceversa. L’ impatto della LM sulla funzione dipenderà dal livello e dalla gravità della lesione e dall’assistenza sanitaria disponibile. Gli Standard Internazionali per la Classificazione Neurologica della Lesione Midollare vengono spesso utilizzati in contesti sanitari per descrivere l’estensione della lesione (includendo il tipo ed il livello della lesione) sulla base di un esame sistematico sensitivo e motorio della funzione neurologica (2). La LM può essere suddivisa in due tipi sulla base della gravità (2), ovvero: ■ Lesione completa – le persone che subiscono una lesione completa non hanno alcuna funzione sensitiva o motoria al di sotto del livello di LM e specificamente a livello S4-S5. ■ Lesione incompleta – le persone che subiscono una lesione incompleta conservano alcune funzioni (ovvero sensitiva e muscolare) al di sotto del livello neurologico della lesione, compresi i segmenti sacrali più bassi S4-S5. Ci sono diversi tipi di LM incomplete, come la sindrome spinale anteriore, centrale e posteriore, e la sindrome di Brown-Sequard, le quali possono influenzare le funzioni residue.
Il livello al quale il midollo spinale è danneggiato determina quali parti del corpo possono essere colpite da paralisi, ovvero la perdita della funzione muscolare e della sensibilità (2): ■ Paraplegia – si riferisce ad una lesione dei segmenti toracici (T2-T12), lombari (L1-L5) o sacrali (S1-S5) del midollo spinale, compresi il cono midollare (parte distale bulbosa del midollo spinale) e la cauda equina (raccolta di radici nervose che emergono dal midollo spinale a L1-L2). Il risultato è una perdita di grado variabile del controllo degli arti inferiori e del tronco senza il coinvolgimento degli arti superiori. Ad esempio, persone con lesioni complete fra T2 e T8 avranno uno scarso controllo del tronco, dovuto all’insufficiente controllo dei muscoli addominali, con perdita totale della funzione degli arti inferiori; le persone con lesioni complete più basse, fra T9 e T12, avranno un buon controllo del tronco e dell’addome e la perdita totale delle funzioni degli arti inferiori; mentre persone con lesioni lombari e sacrali manterranno parzialmente il controllo dei loro arti inferiori. La Figura 1.1 nel Capitolo 1 mostra la localizzazione dei diversi segmenti del midollo spinale. ■ Tetraplegia – si riferisce ad una lesione del segmento cervicale del midollo spinale, ovvero compresa fra C1 e T1. A seconda della gravità e del livello della lesione, la tetraplegia risulta in diversi gradi di perdita funzionale nel collo, nel tronco, e negli arti superiori ed inferiori. Ad esempio, persone con lesioni complete C1-C3 avranno bisogno dell’assistenza di un ventilatore per respirare; persone con lesioni complete C5 avranno il controllo delle spalle e delle braccia, ma senza il controllo dei polsi e delle mani; persone con lesioni complete C6 avranno l’estensione del polso ma nessuna funzionalità delle mani e delle dita; le persone con lesioni complete C7-C8 saranno in grado di controllare gli arti superiori, ma avranno problemi di destrezza con le mani e dita.
72
Capitolo 4 Sistema sanitario e bisogni riabilitativi
Oltre alla perdita motoria-sensoriale, la LM colpisce la funzione neurologica autonomica del corpo, con conseguenti multiple menomazioni, come la perdita della funzionalità intestinale, vescico-sfinterica e sessuale (3). Le persone con LM sperimentano inoltre limitazioni e restrizioni della partecipazione ad una serie di attività in aree come la mobilità (ad es. cambi di posizione, trasferimenti, cammino), le attività per la propria cura (ad es. fare il bagno, vestirsi, andare in bagno, alimentarsi), le attività domestiche (ad es. pulire, cucinare, occuparsi degli altri), l’istruzione, l’occupazione, il mantenimento delle relazioni sociali e la partecipazione alle attività ricreative (4).
Possibili complicanze Le persone con LM sono a rischio di una serie di patologie secondarie, che possono essere una causa principale di morbilità e mortalità. Mentre alcune di queste complicanze si verificano principalmente durante la pre-ospedalizzazione ed in fase acuta dopo la lesione, altre possono manifestarsi in qualunque momento. Ci sono prove che, con una gestione appropriata, molte di queste patologie secondarie siano prevenibili.
Sistema circolatorio
Disreflessia autonomica: Questa condizione è caratterizzata da un aumento improvviso della pressione sanguigna e generalmente si verifica nelle persone con LM a livello T6 o superiore (5). Altri segni e sintomi includono forte emicrania, sudorazione profusa, flush o arrossamento cutaneo, visione offuscata, orripilazione ed aritmie cardiache (5–7). Le cause possono essere qualsiasi stimolo nocivo, più comunemente la distensione o il blocco vescicale o intestinale. La disreflessia autonomica è un’emergenza medica che, se non trattata, può avere conseguenze gravi come ictus, convulsioni e morte. L’educazione sulla prevenzione e sulle strategie di gestione è essenziale per tutte le persone con tetraplegia
o paraplegia di livello alto ed anche per i loro familiari ed assistenti (6). Trombosi venosa profonda (TVP): le persone con LM sono ad alto rischio di TVP, soprattutto in fase acuta e post-acuta della lesione quando le alterazioni del controllo neurologico dei vasi sanguigni e l’immobilità possono portare a stasi circolatoria (8). Altri fattori di rischio includono età, obesità, presenza di fratture degli arti inferiori, gravidanza ed un’anamnesi positiva per TVP. Segni e sintomi includono dolore, edema, fragilità, alterazioni cromatiche e termiche dell’arto affetto (8). La TVP può causare un’embolia polmonare e potenzialmente la morte, e quindi richiede un trattamento rapido con farmaci anticoagulanti (8). Misure di prevenzione come i farmaci anticoagulanti o l’uso di calze contenitive sono estremamente importanti e dovrebbero far parte delle procedure generali degli ospedali (8,9). Ipotensione: L’ipotensione ortostatica è un abbassamento significativo della pressione del sangue di un individuo nel momento in cui assume la posizione eretta. Colpisce le persone sia con paraplegia che con tetraplegia e si riscontra comunemente durante la fase acuta della lesione, sebbene alcuni sintomi possano continuare a verificarsi anche successivamente (10,11). I sintomi comprendono tipicamente stanchezza, stordimento, vertigini, visione offuscata, debolezza muscolare, e la perdita anche temporanea di coscienza (12). La gestione prevede l’attento monitoraggio, cambiamenti graduali nella postura e, quando appropriato, la somministrazione di farmaci e compresse di sale (13).
Apparato uro-genitale
Le infezioni delle vie urinarie (IVU): Le IVU sono frequenti nelle persone con LM e sono una delle cause principali di rientro in ospedale nei paesi ad alto reddito e di morte prematura nei paesi in via di sviluppo (6, 14–16). La LM altera la funzionalità vesciso-sfinterica e molte persone utilizzano il cateterismo per la gestione di tale funzione (vedi sotto). Vi sono alcune evidenze che il tipo di gestione vescicale ed anche la tipologia 73
Prospettive Internazionali sulla lesione del midollo spinale
di catetere utilizzato possono incidere sul rischio di IVU (14,16). Altri fattori associati con l’incremento del rischio di IVU sono l’assunzione di liquidi, l’igiene personale, la gravidanza, i sistemi di supporto sociale e l’accesso ai servizi sanitari (17). Segni e sintomi evidenti di IVU includono episodi di incontinenza urinaria, dolore durante la minzione, urine torbide e maleodoranti, febbre, malessere o sonnolenza, oltre ad aggravamento delle altre complicanze legate alla LM come l’incremento della spasticità, il dolore neuropatico e la disreflessia autonomica (6,15,16). Le analisi di laboratorio (esame urine, urocoltura) vengono utilizzate per confermare la presenza di IVU e per stabilire il trattamento appropriato (6,15,16). La prevenzione delle IVU è l’obiettivo principale nella gestione della funzione vescico-sfinterica. L’educazione alle tecniche corrette di cateterismo e cura è fondamentale. Altri aspetti della gestione sono le visite regolari di follow-up, l’assunzione adeguata di liquidi, buoni standard di igiene personale, e la cura appropriata dei presidi medici necessari per la gestione della vescica (6,15).
Sistema neuro-muscoloscheletrico
Spasticità/spasmi: La spasticità è una complicanza comune tra le persone con LM (13,18). Può provocare movimenti involontari e sviluppare retrazioni muscolari, che limitano l’ampiezza del movimento e quindi ostacolano la funzione. Le metodiche di gestione comprendono: movimento passivo o stretching, che può essere applicato manualmente da un fisioterapista, gestito autonomamente o effettuato attraverso il posizionamento, l’uso di tutori e/o di gessi seriali; movimento attivo ed esercizio; tecniche elettriche, meccaniche o termiche per stimolare i muscoli o i nervi; farmaci antispastici (18,20). Osteoporosi sottolesionale: In seguito alla LM si verifica un’immediata perdita di massa ossea, con incremento del rischio di osteoporosi sotto il livello della lesione (21). Un apporto inadeguato di calcio con la dieta, un’insufficienza di vitamina D, l’invecchiamento e l’inattività possono anche 74
contribuire alle alterazioni della densità ossea (21). Se è presente l’osteoporosi, le persone con LM sono a maggior rischio di fratture ossee, le quali possono verificarsi facilmente durante le attività della vita quotidiana, quali i trasferimenti. Data l’immediata perdita di massa ossea in seguito alla LM, la gestione precoce della salute ossea è particolarmente importante. Esempi di trattamento sono: somministrazione di bifosfonati (farmaci che prevengono o curano la perdita di massa ossea), insieme alla vitamina D e/o calcio; attività sotto carico; stimolazioni elettriche. Tuttavia le evidenze sulla loro efficacia sono limitate (21–25). Ossificazione eterotopica: è una condizione che consiste nella formazione anomala di osso nei tessuti molli intorno alle articolazioni sotto il livello della LM. Le articolazioni comunemente colpite sono: anche, ginocchia e, nelle lesioni cervicali, spalle e gomiti (13). L’ossificazione eterotopica limita l’ampiezza dei movimenti articolari e può quindi avere un impatto significativo sull’outcome funzionale per le persone con LM. È importante avere una diagnosi radiologica precoce. Non essendo chiara la causa delle ossificazioni eterotopiche, il suo trattamento è spesso difficile. Le limitate evidenze disponibili suggeriscono che la somministrazione precoce di farmaci antiinfiammatori possa essere efficace nel ridurre il rischio di sviluppo di ossificazione eterotopica. Cure come la somministrazione di farmaci e la radioterapia possono aiutare a fermare la progressione dell’ossificazione eterotopica, mentre il trattamento chirurgico può essere utile nel migliorare l’ampiezza di movimento delle articolazioni colpite (26).
Apparato respiratorio
Funzione respiratoria: La capacità polmonare, la facilità di respirazione e la capacità di tossire e di espellere le secrezioni sono spesso compromesse in seguito alla LM come risultato della paralisi dei muscoli respiratori (27,28). Le persone che hanno livelli alti di tetraplegia sono particolarmente vulnerabili. Persone con LM a livello pari o superiore a C3 richiede spesso l’utilizzo di
Capitolo 4 Sistema sanitario e bisogni riabilitativi
ventilazione meccanica continua o l’impianto di un pacemaker del nervo frenico o diaframmatico per mantenere una funzione respiratoria adeguata (29–31). In talune persone è necessario l’intervento di tracheostomia durante la fase acuta di trattamento per il mantenimento di una via aerea adeguata oltre che per facilitare l’aspirazione delle secrezioni e la ventilazione (13). Complicanze respiratorie: polmonite, atelettasia (“polmone collassato”), inalazione e insufficienza respiratoria rimangono le principali cause di morbilità e mortalità nelle persone con LM. Tuttavia, con un’attenta gestione, queste complicanze sono prevenibili. Le misure consigliate includono la vaccinazione antinfluenzale annuale, la vaccinazione antipneumococcica ogni 5 anni, cure tempestive delle infezioni del tratto respiratorio superiore con terapia antibiotica, implementazione precoce di assistenza alla tosse nelle persone con livello alto di LM. La gestione a lungo termine necessita di: rivalutazioni regolari con analisi strumentali delle funzioni respiratorie e polmonari; ausili per la ventilazione meccanica a breve o lungo termine; allenamento dei muscoli respiratori; esercizio aerobico; supporto psicologico per sviluppare nuove capacità di adattamento, soprattutto per coloro che dipendono da un ventilatore; educazione della persona con LM e dei suoi familiari (29). In alcune situazioni può essere necessario l’impianto chirurgico di un pacemaker per stimolare i principali nervi e muscoli respiratori (ad es. il diaframma) permettendo così una respirazione indipendente dal ventilatore (29,32).
di persone con LM provano dolore neuropatico come conseguenza del danno al midollo spinale, normalmente caratterizzato da sensazioni di bruciore, fitte lancinanti, dolore sordo, scosse elettriche (13,33,38). Le persone con LM sono anche sottoposte a sviluppo di dolore muscolo-scheletrico, risultante dal sovraccarico funzionale, per esempio il dolore alle spalle causato dalla spinta della carrozzina manuale, da spasmi muscolari, da instabilità meccanica o alterata postura (39). Il dolore viene vissuto in modo diverso da ogni individuo e quindi bisogna considerare diversi fattori biomedici, culturali e psicosociali (35, 40–42). È necessario un approccio multidisciplinare per impostare un corretto programma di gestione del dolore, dove possono essere inclusi farmaci, fisioterapia, massaggi, agopuntura, psicoterapia, tecniche di meditazione e rilassamento, utlizzo di ausili (vedi Riquadro 4.1 per la definizione), revisione e modifica dei sistemi di seduta, e addestramento a metodi alternativi per svolgere attività come i trasferimenti (13,33,34,38).
Pelle
Dolore
La maggior parte delle persone con LM sono affette da dolore cronico, il quale può avere un impatto significativo sulla loro qualità di vita (13, 33–35). Negli ultimi anni è stata elaborata l’International Spinal Cord Injury Pain Classification [Classificazione Internazionale del Dolore da Lesione Midollare] per assistere medici e ricercatori nel classificare il dolore dovuto a lesione midollare (36,37). Una percentuale significativa
Lesioni da pressione: Le persone con LM sono ad alto rischio di sviluppare ulcere da pressione come risultato delle alterazioni sensitive e motorie. La presenza di altri fattori comportamentali, socio-demografici e clinici – fumo, carenze nutrizionali (malnutrizione, peso sotto la norma, anemia), infezioni, macerazione cutanea da sudorazione o incontinenza, o condizioni di comorbilità come diabete e disturbi respiratori – possono incrementare il rischio di lesioni da pressione (46–48). Le lesioni da pressione possono svilupparsi in qualsiasi momento e possono avere un impatto significativo sulla salute dell’individuo, sulle sue attività e sulla qualità di vita (46), incidendo inoltre sui costi del sistema sanitario per l’incremento del tasso di ospedalizzazione e l’aumento dei tempi di ricovero (49). Prevenire lo sviluppo di lesioni da pressione è uno degli aspetti più importanti di salute nella persona con LM e dal punto di vista economico è più efficace rispetto al trattamento (47). Di 75
Prospettive Internazionali sulla lesione del midollo spinale
conseguenza le persone con LM ed i loro familiari necessitano di adeguata educazione ed addestramento sulle tecniche di gestione corretta della cute come parte integrante dell’assistenza a lungo termine (47,50). La prevenzione comprende semplici misure come controlli regolari della pelle, tecniche di scarico della pressione, gestione adeguata della vescica e dell’intestino, fornitura di ausili adeguati, e corretta nutrizione (46–48,51). I metodi di trattamento comprendono medicazioni appropriate delle lesioni, misure per lo scarico delle pressioni, terapia antibiotica per le infezioni, e trattamento chirurgico (46–48,50).
Bisogni sanitari Soccorso pre-ospedaliero e terapia in fase acuta L’assistenza fornita nelle prime 24 ore e nei primi giorni dopo una LM traumatica è critica e può
influenzare in maniera significativa i risultati per una persona traumatizzata(51). La gestione pre-ospedaliera richiede: una rapida valutazione, che comprende la misurazione dei parametri vitali ed il livello di coscienza; la gestione iniziale della lesione, e la stabilizzazione delle funzioni vitali, l’immobilizzazione della colonna per preservare la funzione neurologica fino a quando non si possa ottenere una stabilizzazione a lungo-termine, e il controllo del sanguinamento, della temperatura corporea e del dolore; e l’accesso tempestivo e sicuro al sistema sanitario (48,51–55). Le persone con LM dovrebbero arrivare idealmente in un contesto di assistenza in fase acuta nelle due ore successive alla lesione (54). Gli interventi in fase acuta, oltre alle tecniche applicabili in tutti i grandi traumi (ad es. infusioni, cateterismo vescicale, monitoraggio dei segni vitali) devono concentrarsi su: dare priorità e curare le lesioni che possono mettere la vita in pericolo per massimizzare la possibilità di sopravvivere; curare le lesioni che potenzialmente portano a
Riquadro 4.1 Definizioni Ausilio: si definisce ausilio “qualsiasi prodotto, strumento, attrezzatura o sistema tecnico utilizzato da una persona diversamente abile, sia appositamente costruito o generalmente disponibile in commercio, che viene utilizzato per la migliorare o mantenere le proprie capacità funzionali” (43). Modifiche ambientali: Un ambiente accessibile ha un effetto sia sulle prestazioni funzionali delle persone con disabilità che sulle loro possibilità di utilizzare ausili. Le modifiche ambientali, sia rivolte al singolo individuo (come l’istallazione di un maniglione per assistere i trasferimenti sul wc, o l’adattamento della larghezza di una porta per permettere l’accesso di una carrozzina) che alla comunità (come rampe e ascensori in edifici pubblici), possono aiutare l’individuo a superare le barriere architettoniche all’interno di casa, scuola e luogo di lavoro. Progettazione universale e tecnologia in commercio: La progettazione universale è definita nel CRPD come “la progettazione di prodotti, ambienti, programmi e servizi utilizzabili da tutte le persone, nella misura più estesa possibile, senza il bisogno di adattamenti o progettazioni specializzate..”(1). Sebbene l’argomento di questa sezione sono i prodotti progettati specificatamente per l’uso da parte delle persone con lesione midollare, è importante essere consapevoli che esistono già in commercio molte tecnologie con caratteristiche di progettazione universale che potrebbero anch’esse essere utili (ad es. telefoni cellulari, computer ed elettrodomestici da cucina). Vedi il Capitolo 7 per maggiori dettagli. Ausilio appropriato: Questo termine identifica l’ausilio che risponde ai bisogni dell’utente nel suo ambiente (44,45). Questo comprende ausili accettati dalla persona, di misura corretta e se necessario di supporto posturale adeguato, resistente nel tempo e sicuro, disponibile in commercio nella nazione di appartenenza, e che può essere acquistato e mantenuto a costi accettabili (45).
76
Capitolo 4 Sistema sanitario e bisogni riabilitativi
disabilità così da minimizzare le menomazioni; e ridurre il dolore e la sofferenza psicologica (54). La diagnosi accurata della LM e di ogni altra patologia concomitante (ad es. lesione cerebrale traumatica, fratture degli arti, lesioni toraciche o addominali, ferite e lesioni penetranti) è essenziale per poter fornire appropriata assistenza sanitaria e riabilitazione. La valutazione dovrebbe iniziare immediatamente all’arrivo in ospedale ed includere: l’anamnesi medica, segni e sintomi, ad es. astenia, deficit sensitivi e motori, disfunzioni dell’apparato vescico-sfinterico ed intestinale, alterazioni anatomiche, edemi localizzati; un esame neurologico (motorio e sensitivo); esami strumentali, ovvero raggi X, tomografia computerizzata e/o risonanza magnetica; e analisi di laboratorio, come gli esami ematochimici e colturali. Nel caso in cui il rachide sia instabile o vi sia una compressione continuativa del midollo spinale sono necessari interventi conservativi e/o chirurgici. Per entrambe le LM traumatiche e non, ci sono benefici e complicanze associate sia alle cure conservative che chirurgiche. Bisognerebbe prendere in considerazione molti fattori per determinare l’approccio di gestione più appropriato, tra cui il livello della lesione, il tipo di frattura, il grado di instabilità, la presenza di compressione neurale, gli effetti delle altre ferite, la durata dell’intervento chirurgico, la disponibilità delle risorse e delle competenze, i benefici ed i rischi. In tutti i casi le persone con LM dovrebbero essere informate sulle opzioni della gestione conservativa e chirurgica. La gestione conservativa prevede sistemi per immobilizzare la colonna e “ridurre” una lussazione con, ad esempio, riposo a letto, trazione del rachide o utilizzo di ortesi (ad es. HaloVest) per immobilizzare la colonna, che devono essere mantenute per un periodo di sei o più settimane. La gestione chirurgica può essere usata per decomprimere la colonna vertebrale attraverso la “riduzione” di una lussazione e/o rimuovendo i frammenti della frattura che causano la compressione delle strutture nervose,
e stabilizzare la colonna vertebrale attraverso l’impianto di strumentario per la sintesi e l’utilizzo di innesti ossei. Prove recenti da uno studio prospettico e multicentrico nel Nord America di 313 pazienti con lesioni tra C2 e T1 indicano che la decompressione chirurgica tempestiva, ovvero nelle prime 24 ore successive alla LM, può migliorare i risultati neurologici (56). Sia la gestione conservativa che quella chirurgica hanno potenziali benefici e complicanze e la ricerca è limitata e poco concorde su quale sia l’approccio che meglio promuove i risultati neurologici, ha meno complicanze, consente mobilizzazione e riabilitazione tempestiva, ed è più conveniente (13,51, 57–61). L’assistenza in fase acuta per la LM non traumatica è simile a quella per la LM traumatica, con alcune variazioni a seconda della causa. La chirurgia potrebbe essere considerata per: condizioni degenerative, se c’è un danno notevole al canale vertebrale(62,63); tumori spinali, spesso seguita da radioterapia o chemioterapia (64); e condizioni vascolari spinali, con l’eccezione dell’ischemia (65, 66). La LM non traumatica causata da malattie infettive potrebbe anche necessitare della chirurgia, ma normalmente necessita di trattamento immediato con cure farmacologiche come antibiotici, antivirali o antimicotici (67).
Assistenza sanitaria in fase post acuta e riabilitazione Un’appropriata assistenza sanitaria e riabilitativa può prevenire complicanze associate alla LM e può agevolare la persona nel raggiungere una vita soddisfacente e produttiva. La riabilitazione, definita come “una serie di misure che aiutano l’individuo a raggiungere e mantenere la funzionalità ottimale nell’interazione con il proprio ambiente” (44), nella persona con LM dovrebbe iniziare in fase acuta, continuare ad essere disponibile per favorire la funzionalità, ed essere disponibile in contesti diversi, che vanno dall’ospedale fino al domicilio ed alle comunità. 77
Prospettive Internazionali sulla lesione del midollo spinale
Recuperare la funzionalità è una priorità assoluta per la persona con LM. Diversi studi indicano che il recupero funzionale degli arti superiori è la prima priorità per le persone con tetraplegia e recuperare la funzione sessuale è prioritario per la persona con paraplegia, mentre il recupero delle funzioni vescicale ed intestinale è importante per entrambi i gruppi (68–71). La sezione successiva descrive metodi efficaci per migliorare le funzioni corporee e mentali.
esterno collegato ad una sacca di drenaggio tramite un catetere (utilizzabile solo dal sesso maschile); utilizzo di farmaci; elettrostimolazione; trattamento chirurgico per creare una deviazione urinaria o posizionare una stomia addominale per cateterizzazione. Ogni individuo necessita di un programma di gestione personalizzato della vescica che prende in considerazione fattori come genere, funzionalità vescicale, mobilità, equilibrio da seduto, funzionalità delle mani e stile di vita. Bisognerebbe inoltre considerare vantaggi e svantaggi associati ad ogni metodo di gestione vescicale, e verificare che sia appropriato e disponibile nel contesto individuale. I metodi di svuotamento manuale sono generalmente sconsigliati e l’uso a lungo termine come unico metodo di svuotamento vescicale non è considerata la migliore prassi (16,72). Le evidenze scientifiche suggeriscono che il cateterismo intermittente sia l’opzione da preferire, in quanto associata al minor numero di complicanze, soprattutto rispetto al cateterismo permanente (16). Uno studio randomizzato controllato condotto negli Stati Uniti ha dimostrato che un breve programma educativo (basato sull’osservazione delle tecniche di cateterismo da parte di un infermiere esperto, consulenza medica su come migliorare la gestione vescicale e quando rivolgersi alla assistenza sanitaria, distribuzione di materiale informativo scritto sulla gestione delle IVU ed una chiamata telefonica per chiarire eventuali dubbi sorti dopo la sessione educativa) ha portato ad una riduzione dei sintomi segnalati, minore necessità di terapia antibiotica e riduzione della frequenza di IVU (14). La ricerca ha inoltre dimostrato che il cateterismo intermittente pulito (Clean Intermittent Catheterization – CIC) costituisce un metodo sicuro, efficiente e a basso costo, adatto a contesti con scarsa disponibilità di risorse (72–74).
Gestione della funzione vescicale
La perdita della normale funzione vescicale è una delle conseguenze più significative per le persone che hanno subito una LM. Una cattiva gestione della funzione vescicale può portare a complicanze secondarie come le infezioni vescico-uretrali (IVU), ritenzione urinaria, incontinenza, calcoli renali e nel tratto urinario, e reflusso urinario (15). Quando questi problemi si ripetono per un periodo di tempo protratto, si possono sviluppare patologie che mettono a rischio la vita come l’insufficienza renale (13,16). I metodi utilizzati per lo svuotamento vescicale nelle persone con LM comprendono (15,16): ■ Cateterismo intermittente – è costituito dall’inserimento di un catetere vescicale per drenare l’urina, rimosso poi immediatamente al termine dell’operazione. La manovra va ripetuta regolarmente durante la giornata e può essere eseguito utilizzando sistemi “sterili” (ovvero monouso) o “puliti” (ovvero il catetere viene sanitizzato e conservato per molteplici utilizzi). ■ Cateterismo a permanenza – viene utilizzato un catetere vescicale che viene mantenuto inserito a breve o a lungo termine. Le due modalità principali di cateterismo a permanenza sono 1) trans-uretrale e 2) sovra-pubico, con inserimento del catetere attraverso una incisione chirurgica di piccole dimensioni al di sopra del pube. ■ Altri metodi – comprendono metodi manuali per stimolare lo svuotamento o l’utilizzo di un condom, ovvero un sistema di raccolta 78
Gestione della funzione intestinale
L’alvo neurologico è una condizione comune in seguito a LM ed è associato ad un notevole
Capitolo 4 Sistema sanitario e bisogni riabilitativi
numero di disturbi gastrointestinali, quali ridotta motilità colica, tempo prolungato di transito intestinale, stipsi cronica, distensione addominale e incontinenza fecale (75–77). Le persone con LM affette da alvo neurologico spesso temono la possibile incontinenza intestinale, che può avere un impatto notevole sulla possibilità dell’individuo di riprendere il proprio ruolo sociale precedente e le proprie attività (75,76). Una gestione adeguata della funzione intestinale può essere particolarmente difficile dove le risorse sono limitate. Ad esempio, uno studio condotto in Pakistan in seguito al terremoto del 2005, ha evidenziato come l’accesso limitato ad un’assistenza sanitaria appropriata, ad ausili sanitari ed a servizi igienici idonei aveva un considerevole effetto sulla possibilità di gestione adeguata dell’alvo (78). Così come con la gestione della vescica, è necessario impostare per ogni individuo un programma personalizzato di gestione dell’alvo. Una valutazione completa, lo sviluppo di un programma personalizzato per l’intestino, il monitoraggio e l’educazione sono aspetti importanti del processo (76). Realizzare un programma efficace per la gestione dell’alvo potrebbe includere misure come: ■ un apporto adeguato e appropriato di nutrienti e liquidi; ■ l’utilizzo di integratori alimentari e farmaci per via orale quando necessario; ■ la scelta di metodi appropriati per facilitare l’evacuazione, come metodiche manuali (ovvero evacuazione manuale, stimolazione digitale del retto e del canale anale, e corretto posizionamento) e stimolanti come supposte, clisteri o lassativi; ■ il ricorso alla chirurgia se la gestione dell’alvo richiede una stomia; ■ strategie per gestire eventuali complicanze (75,77,79–81).
Gestione della funzione sessuale e salute riproduttiva
La LM e le menomazioni associate possono avere effetti fisiologici, pratici e psicologici sulla
funzione sessuale – eccitazione, erezione, espressione sessuale e fertilità. Sia gli uomini che le donne potrebbero trovarsi ad avere una diminuzione o perdita di sensibilità, difficoltà nel raggiungere l’orgasmo, difficoltà nel muoversi e nel posizionarsi, ed un calo dell’autostima e della propria sicurezza (82–84). In aggiunta, molti uomini riscontrano la completa o parziale perdita dell’erezione peniena e dell’eiaculazione, con implicazioni sulla fertilità (85). Nelle donne, le mestruazioni possono essere interrotte in seguito alla lesione, anche se in genere tornano alla normalità nel giro di qualche mese (86). I cambiamenti nella funzione sessuale possono avere grandi effetti sulla qualità della vita per le persone con LM (69,82). Questi aspetti psicologici e sociali sulla sessualità sono discussi nel Capitolo 6. Riprendere l’attività sessuale è una priorità importante per le persone con LM. Uno studio condotto in rete per determinare l’effetto della LM sulla funzione sessuale, riferisce che le ragioni principali per cui le persone volevano esercitare l’attività sessuale sono l’intimità, il bisogno sessuale, l’autostima e la conservazione del partner (69). La sessualità è spesso trascurata nel contesto della riabilitazione visto che gli operatori sanitari potrebbero sentirsi a disagio nell’affrontare questo tema e potrebbero non avere le conoscenze e competenze necessarie (82). La gestione della funzione sessuale necessita di discussioni rispettose, al momento opportuno, con il coinvolgimento dell’individuo e del suo partner. L’assistenza medica e le misure riabilitative devono essere in sintonia con l’individuo e dovrebbero considerare l’età, il genere, e i fattori fisici, psicosociali e culturali (82,83). Queste misure includono: (1) la fornitura di educazione ed informazione sulla preparazione e sul posizionamento per l’attività sessuale, contraccettivi, prevenzione delle infezioni trasmesse sessualmente, e strategie di gestione nel caso in cui si manifestasse incontinenza o disreflessia autonomica; (2) la fornitura di ausili di supporto per 79
Prospettive Internazionali sulla lesione del midollo spinale
l’eccitazione o per migliorare il posizionamento; le cure per la disfunzione erettile negli uomini (ad es. stimolazione vibratoria, farmaci per via orale, iniezioni nel pene, dispositivi per l’aspirazione e, come ultima risorsa, l’opzione chirurgica della protesi peniena) e (3) fecondazione assistita se necessaria (13,82,83). Quando le donne con LM rimangono gravide, bisogna considerare il potenziale effetto dei farmaci per la LM sul feto, il maggiore rischio di complicanze (come le IVU, le ulcere da pressione, la trombosi venosa profonda e problemi respiratori) associate con la gravidanza, cambiamenti funzionali associati all’aumento del peso (ad es. difficoltà nei trasferimenti verso la fine della gravidanza) e le complicanze durante il travaglio, compresa la disreflessia autonomica (86).
Gestione delle difficoltà funzionali
La LM provoca limitazioni in diverse attività. La riabilitazione dovrebbe mirare ad assistere le persone a superare queste limitazioni attraverso: miglioramento delle funzioni del tronco e degli arti; modifiche dell’ambiente circostante la persona; fornitura degli ausili ed altri adattamenti possibili per permettere agli individui di continuare a vivere nei loro ruoli familiari e lavorativi. Sebbene ci sia una variazione tra individui, la Tabella 4.1 fornisce un’ampia sintesi dei risultati
funzionali (mobilità, cura della propria persona ed attività domestiche) che si vorrebbero ottenere a seconda del livello di LM completa. Una vasta gamma di modalità di riabilitazione possono essere impiegate per migliorare la funzionalità o compensare la perdita funzionale; alcune di queste sono descritte nella sezione successiva. Esercizio per migliorare, ripristinare o mantenere la funzionalità: l’esercizio è una tecnica chiave nella riabilitazione per migliorare la forza e la funzione muscolare negli arti superiori e può includere interventi come la pratica ripetuta (movimenti altamente ripetitivi) e la stimolazione elettrica (19, 88–90). Gli interventi usati per gli arti inferiori comprendono: esercizi passivi ed attivi per lo stretching, il recupero dell’ampiezza del movimento ed il rinforzo muscolare; la stimolazione elettrica dei muscoli; diverse strategie di ripristino della postura in combinazione con l’uso degli ausili, come ortesi, stampelle, deambulatori e parallele (13,19,91,92). L’esercizio è importante per le persone con LM in quanto viene associato a diversi benefici psicologici e fisiologici, fra i quali il miglioramento della forza e della resistenza dei muscoli, la riduzione della spasticità, il miglioramento dell’ampiezza del movimento delle articolazioni, la riduzione del dolore ed il miglioramento del benessere cardiovascolare (93–95).
Tabella 4.1 Risultati funzionali attesi per tetraplegia motoria completa ad 1 anno post-lesione e per persone con paraplegia completa Risultati funzionali attesi per tetraplegia completa Misura Alimentazione C1–4 Dipendente C5 Indipendente con ausili Necessita di assistenza fino ad essere indipendente con ausili Necessita di assistenza C6 Indipendente con o senza ausili Necessita di assistenza fino ad essere indipendente con ausili Indipendente C7 Indipendente Indipendente con ausili C8-T1 Indipendente Indipendente
Igiene personale Dipendente
Vestizione arti superiori
Dipendente
Indipendente
Indipendente
…continua
80
Capitolo 4 Sistema sanitario e bisogni riabilitativi
…seguito della pagina precedente Misura Vestizione arti inferiori C1–4 Dipendente C5 Dipendente C6 Necessita di assistenza C7 Necessita di assistenza fino ad essere indipendente con ausili Necessita di assistenza fino ad essere indipendente con ausili Necessita di assistenza fino ad essere indipendente Indipendente C8-T1 Generalmente indipendente
Fare il bagno
Dipendente
Dipendente
Mobilità a letto
Dipendente
Necessita di assistenza
Necessita di assistenza fino ad essere indipendente con ausili Necessita di assistenza
Indipendente con ausili
Indipendente
Spostamento del carico
Indipendente su carrozzina elettrica con sistema di basculamento o reclinazione Dipendente
Trasferimenti
Necessita di assistenza se non è su carrozzina elettrica con caratteristiche di basculamento o reclinabilità Necessita di assistenza
Indipendente
Indipendente
Mobilità in carrozzina
Indipendente con carrozzina elettrica; dipendente con carrozzina manuale Dipendente
Guidare
Indipendente con carrozzina elettrica; indipendente fino ad un certo punto con adattamenti su superfici piane Indipendente con adattamenti
Necessita di assistenza fino ad essere indipendente su superfici allo stesso livello Indipendente con carrozzina manuale su superfici piane
Indipendente con o senza l’asse di trasferimento per superfici allo stesso livello Indipendente con carrozzina manuale, eccetto nelle curve e sul terreno irregolare Indipendente con adattamenti
Indipendente
Indipendente
Indipendente con adattamenti
Indipendente con adattamenti
Risultati funzionali attesi per paraplegia completa T2–9 Attività della vita quotidiana (igiene personale, alimentazione, vestirsi, fare il bagno) Intestino e vescica Trasferimenti Cammino Indipendente T10-L2 Indipendente L3-S5 Indipendente
Indipendente Indipendente Solo per esercizio e utilizzando ortesi e stampelle/ deambulatore
Indipendente Indipendente In ambito domestico con ortesi; all’aperto con ortesi e stampelle
Indipendente Indipendente Indipendente ma potrebbe necessitare di ortesi e stampelle/bastone
Termini: Dipendente – la persona con LM necessita di un altro individuo per svolgere il compito. Necessita di assistenza – la persona con LM può svolgere l’attività quando assistita da un altro individuo. Il livello di assistenza può essere minimo, medio o alto. Indipendente – la persona con LM può svolgere il compito con o senza ausili e senza alcuna forma di assistenza personale. Fonte: Adattato da (87) con autorizzazione da Wolters Kluwer e Lippincott Williams & Wilkins.
81
Prospettive Internazionali sulla lesione del midollo spinale
Insegnamento di nuove strategie e tecniche: La riabilitazione fornisce alle persone un supporto e una guida per imparare e perfezionare modalità nuove ed alternative per eseguire le varie attività. Una vasta gamma di strategie e tecniche alternative possono essere utilizzate dalle persone con LM per superare le limitazioni nelle attività, fra le quali: imparare nuove tecniche per vestirsi che utilizzano le funzioni muscolari residue; indossare indumenti che permettono di vestirsi con più facilità; imparare a mangiare con utensili adattati per essere indipendenti; modificare le proprie routine, ad es. routine delle cure personali, per massimizzare l’efficienza e per risparmiare energia; delegare compiti ad altri quando opportuno. Una riabilitazione ha successo se mette in grado gli individui di applicare ciò che hanno imparato in una vasta serie di contesti diversi. Di conseguenza è essenziale avere l’opportunità di sperimentare nuove strategie e tecniche al di fuori del contesto terapeutico, ad es. a casa ed in comunità. Fornitura degli ausili (includendo le modifiche degli ambienti circostanti la persona): La fornitura degli ausili è un elemento importante della riabilitazione, ed è essenziale per le persone con LM, perché può permettere loro di compiere le attività quotidiane come mangiare, vestirsi e muoversi con un grado più alto di indipendenza, che altrimenti non sarebbe possibile. Le modifiche ambientali in maniera analoga rimuovono le barriere alla funzionalità e dovrebbero essere considerate prima della dimissione dall’ospedale, come discusso in seguito e nel Capitolo 7. Gli utenti e gli assistenti hanno bisogno di una formazione appropriata per la cura e l’utilizzo degli ausili; ad esempio, gli utenti delle carrozzine che sono stati addestrati hanno dimostrato di avere una probabilità maggiore di riferire risultati funzionali migliori e soddisfazione (96). La fornitura di ausili appropriati contribuisce all’empowerment delle persone con LM e può portare a notevoli guadagni nella loro indipendenza e partecipazione in tutte le aree della vita, ad es. educazione, occupazione e svago.
Considerazioni sugli interventi chirurgici: Quando non ci si aspettano ulteriori miglioramenti neurologici o funzionali negli arti superiori, la chirurgia funzionale potrebbe essere una opzione, anche se non è indicata per tutte le persone con LM e per molte non è disponibile (97). La chirurgia può consistere nel trasferimento di uno o più muscoli o tendini per migliorare l’estensione del gomito o del polso, la presa della mano o le pinze con le dita (13). La chirurgia viene seguita da un periodo di immobilizzazione e rieducazione mirata. Per molte persone con LM cervicale, la chirurgia ha consentito il miglioramento del movimento degli arti superiori e della loro funzionalità; tuttavia, gli aspetti individuali devono essere considerati, insieme ai benefici ed agli svantaggi della chirurgia e alla disponibilità della riabilitazione appropriata (89,98,99).
Gestione dei problemi di salute mentale
Durante il periodo post-lesione, gli individui ed i loro familiari sentiranno spesso un senso di afflizione ed una serie di emozioni che includono rifiuto, tristezza, paura, frustrazione o rabbia mentre iniziano il processo di adattamento, come discusso ulteriormente nel Capitolo 6. Fattori personali – compresi genere, età, personalità, modo di affrontare i problemi – e le condizioni di salute mentale premorbose (ad es. depressione, ansia, abuso di alcol o di altre sostanze) e condizioni associate come disturbo post-traumatico da stress (DPTS) influenzeranno l’adattamento della persona alla lesione. Anche i fattori ambientali – come opinioni e valori culturali, atteggiamenti, supporti sociali, disponibilità di ausili appropriati, e lo stato socioeconomico – hanno influenza sull’adattamento (13,48,100–104). La depressione è una condizione di salute mentale comune per la quale le persone con LM sono particolarmente vulnerabili nella fase post-lesione. Uno studio recente ha stimato che il 20–30% delle persone con LM mostrano sintomi clinicamente rilevanti di depressione (105). La depressione può avere gravi conseguenze sia per
82
Capitolo 4 Sistema sanitario e bisogni riabilitativi
l’individuo che per i suoi familiari, ed è rilevante anche per il servizio sanitario. La depressione è associata a miglioramenti meno significativi dell’outcome funzionale, a maggiore probabilità di complicanze quali le lesioni da pressione e le infezioni vescica-uretrali, alti tassi di suicidio, incremento nei tassi di ospedalizzazione, e spese mediche superiori (101,104,106). Le condizioni di salute mentale come la depressione sono spesso considerate come una conseguenza naturale della LM e quindi non vengono affrontate in maniera adeguata (101). La gestione del processo di adattamento necessita di controlli e valutazioni precoci, la possibilità di avere a disposizione in tempi ridotti misure di gestione come una corretta educazione su tale problema, informazioni riguardanti i servizi disponibili e le risorse di supporto, consulenza psicologica e se necessario la somministrazione di farmaci, ed un monitoraggio continuativo a lungo termine (13,48,104,106,107). La guida ed il supporto tra pari sta diventando una componente importante dei programmi di riabilitazione per le persone con LM, e ci sono prove del loro importante ruolo nel facilitare l’adattamento alla lesione e l’outcome funzionale (108–111).
Ausili Il termine “ausili” ed altri termini ad esso correlati sono definiti nel Riquadro 4.1.
Bisogno di ausili
Il bisogno di ausili normalmente inizia al momento di insorgenza della LM e continua per tutta la vita della persona. Il tipo di ausilio necessario è influenzato dal livello della LM e dalle menomazioni associate, fattori ambientali (ad es. l’ambiente fisico, il supporto, le relazioni) e fattori personali (ad es. età, forma fisica, stile di vita) e qualsiasi condizione di comorbilità. Le carrozzine, i sistemi di controllo ambientale e la tecnologia informatica sembrano essere le tecnologie di supporto più utilizzate (112).
La carrozzina è uno degli strumenti più importanti per il recupero della mobilità utilizzati dalle persone con LM (113,114). Ad esempio, uno studio danese ha rilevato che solo il 3,4% di un campione di 236 individui seguiti in follow-up tra 10 e 45 anni dopo una LM traumatica, non aveva bisogno di un ausilio per la mobilità, mentre l’83,5% delle persone utilizzava la carrozzina manuale ed il 27% quella elettrica (115). Analogamente, in uno studio australiano molte persone con LM hanno dichiarato che gli ausili per la mobilità erano un’area di bisogno importante o molto importante (116). Uno studio condotto negli Stati Uniti ha mostrato che gli ausili per la mobilità e per una vita indipendente erano gli apparecchi più comunemente posseduti dai partecipanti con LM, con una percentuale minore di utilizzatori della tecnologia informatica, di protesi, di ortesi, e di strumenti di comunicazione aumentativa ed alternativa (117). Le persone con un livello alto di LM, ovvero con tetraplegia, possiedono molti più ausili delle persone con paraplegia (117). Le necessità di ausili possono cambiare durante le fasi di transizione, quando un individuo ritorna a vivere nella comunità o al lavoro, inizia ad andare a scuola, cambia situazione abitativa o stato di salute, o successivamente ad una perdita o guadagno di funzionalità (118). Quando gli individui con LM invecchiano, tendono ad avere un declino nell’indipendenza funzionale, con conseguente necessità di cambiamenti degli ausili in uso, come per esempio il passaggio da una carrozzina manuale ad una elettrica (119).
Tipi di ausili
La Tabella 4.2 fornisce una panoramica completa degli ausili rilevanti per le persone con LM. Gli ausili vengono spesso catalogati in base alle necessità funzionali e quindi includono sistemi per la mobilità, apparecchi per la comunicazione, ausili per la cura di sé, ausili per le attività domestiche e sistemi di controllo ambientale.
83
Prospettive Internazionali sulla lesione del midollo spinale
Tabella 4.2 Tipi di ausili per le persone con lesioni midollari Aree di attività Mobilità Questa area include tutte quelle attività relative al movimento e agli spostamenti, come cambiare e mantenere la posizione del corpo, eseguire trasferimenti, camminare e muoversi, portare e spostare oggetti, utilizzare mani e braccia, e utilizzare i mezzi di trasporto. Esempi Ortesi spinale : il tipo necessario dipende dal livello e dalla gravità di LM ed include i collari cervicali, immobilizzatore sterno-occipito-mandibolare e ortesi toraco-lombo-sacrali Scopo/Beneficio Le ortesi spinali vengono utilizzate nella fase acuta dopo la lesione per stabilizzare la colonna vertebrale, consentire la guarigione delle ossa o dei tessuti molli, prevenire lesioni aggiuntive, e ridurre il dolore (120). Nella fase di recupero sono destinati a prevenire eventuali deformità, migliorare la postura e limitare il movimento.
L’ortesi d’arto inferiore può permettere il mantenimento di una posizione articolare fissa per controllare la spasticità e prevenire deformità. Può inoltre compensare una debolezza muscolare o un’instabilità articolare e fornire un supporto alle persone che hanno una forza adeguata negli arti inferiori per deambulare (121). Altri ausili per la mobilità: comprendono Gli ausili per il cammino forniscono ulteriore stampelle, bastoni e deambulatori stabilità durante la deambulazione per compensare l’eventuale debolezza muscolare, un deficit di coordinazione o di equilibrio. Carrozzine : includendo quelle manuali (tra- Le carrozzine vengono utilizzate quando zione autonoma o assistita, con tre o quattro la forza negli arti inferiori è insufficiente ruote) e carrozzine elettriche (controllate per consentire la mobilità e possono essere con testa, mento o mani), hand-bike e scoo- adattate per garantire la maggiore autonoter per disabili. mia possibile (122). Ad esempio, carrozzine manuali possono essere controllate attraverso l’uso degli arti superiori, mentre le carrozzine elettriche possono essere controllate attraverso piccolissimi movimenti delle dita su un pannello di controllo, o anche utilizzando il controllo tramite la testa (123) se i movimenti delle mani non sono sufficienti. Ausili per trasferimenti: rulli di scivolamento, Gli ausili per trasferimenti permettono al tavolette di trasferimento, e sollevatori. caregiver di eseguire i cambi di posizione ed i trasferimenti della persona con lesione midollare minimizzando i rischi di infortunio per entrambi. Sistemi di seduta e di supporto: comprenI sistemi di seduta e supporto hanno lo dono sistemi di seduta adattati, cuscini per scopo di facilitare la funzionalità nelle alleviare la pressione e prevenire lesioni da attività quotidiane, prevenire contratture pressione; supporti per la testa, il torace, il e deformità attraverso il mantenimento bacino o le gambe; sistemi di statica; cinture della mobilità articolare e della lunghezza di posizionamento. muscolare e prevenire lesioni cutanee da sfregamento o da pressione (46,48,124).
Ortesi d’arto inferiore : staffe/stecche per sostenere anca, ginocchio, caviglia e piede. L’esempio più comune è l’ortesi per caviglia-piede (AFO).
…continua
84
Capitolo 4 Sistema sanitario e bisogni riabilitativi
Aree di attività
Esempi Ortesi per l’arto superiore : supporti per spalla, gomito, polso e/o mano. Alcuni esempi comprendono splint di posizionamento o per tenodesi (di supporto del polso per consentire la presa funzionale), splint per la mano e per uso funzionale (per mangiare, scrivere a mano o digitare su tastiera).
Scopo/Beneficio Ortesi statiche (fisse) garantiscono l’adeguato posizionamento delle mani per prevenire contratture e deformità. Ortesi dinamiche (articolate) supportano muscoli deboli o paralizzati, migliorando la funzionalità delle mani e degli arti superiori. Ad esempio, un’ortesi polso-mano, controllata dal polso (o ortesi di supporto flessorio), consente la presa nonostante flessori delle dita deboli, utilizzando la forza del polso. Questo permette solitamente un importante guadagno nella funzionalità della mano in persone con lesioni C5, C6 o C7 (125). Un sostegno mobile per l’arto superiore può essere fissato al tavolo o alla carrozzina per eliminare la forza di gravità e consentire all’arto di muoversi orizzontalmente. Questo permette di aiutare la persona nel mangiare, lavarsi e scrivere (126). La persone con lesione midollare spesso identificano gli spostamenti esterni come una delle barriere più importanti da superare. Guidare un veicolo adattato facilita il reinserimento nella quotidianità, l’accesso al mondo del lavoro, l’accesso ai servizi sanitari, e piccoli vantaggi nella qualità della vita con beneficio sulla salute (127). La LM di livello alto può avere ripercussioni sui muscoli respiratori, e la ventilazione meccanica potrebbe essere necessaria attraverso una tracheotomia. Le valvole fonatorie possono assistere le persone con tracheotomia a parlare. Se la parola è debole o non si riesce a produrla, la CAA permetterà alle persone di esprimersi. La tecnologia informatica consente alle persone di accedere alle informazioni su Internet, offre un’alternativa o un metodo addizionale di comunicazione, e consente di partecipare all’educazione, al lavoro e alle attività di svago.
Guida e trasporto: comprende veicoli dotati di rampe o sistemi di sollevamento per trasportare la carrozzina; comandi di guida personalizzati installati sull’automobile per accelerare, frenare e girare; e accessori come sistemi di apertura della porta dell’automobile, maniglie e sistemi di rotazione del sedile per facilitare il trasferimento. Comunicazione Quest’area comprende tutte le attività relative alla comunicazione, come ricevere e produrre messaggi e partecipare a conversazioni (4). Viene considerato anche l’accesso all’informazione in tutte le sue forme. Gli ausili per la comunicazione sono spesso denominati strumenti di “comunicazione aumentativa e alternativa” (CAA) e includono tavolette per la comunicazione, amplificatori vocali, valvole fonatorie, dispositivi elettronici per riproduzione di suoni e programmi computerizzati di riproduzione vocale tramite tecnologia di puntamento ottico o con la testa. Tecnologie informatiche: esempi comprendono sistemi di input alternativo come joystick e touch screen, permettendo il controllo del cursore sullo schermo del computer (128); tastiere più grandi e modificate; sistemi di puntamento con la bocca; sistemi di input vocale (129); sistemi di puntamento oculare che utilizzano i movimenti dell’occhio per selezionare i pulsanti di una tastiera sullo schermo; e la tecnologia elettroencefalografica che acquisisce ed interpreta i segnali celebrali per fare una selezione (130)
…continua
85
Prospettive Internazionali sulla lesione del midollo spinale
…seguito della pagina precedente Aree di attività Cura personale Quest’area include attività legate alla cura di sé stessi, come lavarsi, curare le parti del corpo, evacuazione, vestirsi, mangiare e bere. Esempi Farsi il bagno e la doccia: sedie da doccia; panche da bagno, assi per il trasferimento, maniglie d’appoggio, guanti da bagno, spugne, spazzole da bagno a manico lungo. Rassettarsi e igiene : spazzole per capelli, pettini, spazzolini da denti, rasoi, specchi tutti rivestiti con manici estendibili o angolari. Evacuazione : padelle, sedie comode, alza-WC adattati. Vestirsi: bastone per vestirsi, infilabottoni, apricerniera, calzini a manici lunghi, infilacalze e calzascarpe. Mangiare e bere : piatti e ciotole con bordi rialzati; utensili con manici rivestiti, appesantiti e angolari; tazze con coperchi, cannucce, manici modificati o con due manici. Gli esempi sono vari e comprendono: stuoie antiscivolo per prevenire che i piatti e gli alimenti scivolino; taglieri modificati per stabilizzare il cibo mentre si taglia; utensili da cucina con manici angolati e comodi; apri barattoli e bottiglie; ausili per versare dai bollitori; svita-rubinetti e manopole. Dove il cibo viene cotto sul fuoco o a terra , si possono utilizzare carrelli bassi per spostare gli elementi da un posto all’altro, padelle e pentole che non si inclinano, e strumenti per tirare o spingere oggetti caldi. Esempi includono: controlli remoti e speciali adattamenti agli switch per renderli accessibili (ad es. switch che possono essere attivati posizionando la testa, il mento, le sopracciglia o il fiato). Scopo/Beneficio Gli ausili per la cura di sé permettono alle persone con funzioni fisiche limitate (con difficoltà sia nelle parti superiori che inferiori del corpo) di svolgere le attività per la cura personale senza o con poca assistenza. La presa debole, la scarsa coordinazione o l’ampiezza di movimento limitata vengono compensate per permettere alla persona di muovere e manipolare oggetti. La gestione appropriata delle attività per la cura di sé è essenziale per gli individui che ritornano a ruoli sociali come a scuola o al lavoro. Strumenti come gli specchi giocano un ruolo importante nell’identificazione tempestiva delle ulcere da pressione.
Vita domestica Quest’area include attività legate alle azioni domestiche e quotidiane e compiti come la preparazione dei pasti e i lavori domestici.
Le tecnologie consentono alle persone con funzionalità limitata (difficoltà nelle parti superiori e inferiori del corpo) di compiere le attività domestiche con poca o senza assistenza.
Altro Unità di controllo ambientale
Le persone che vivono con la LM potrebbero perdere l’abilità di controllare dispositivi nel loro ambiente circostante come la televisione, il computer, il telefono, le luci e le porte. I sistemi di controllo ambientale consentono loro di ripristinare questo controllo).
Importanza delle tecnologie di supporto per i risultati funzionali
L’accesso ad una vasta gamma di ausili tecnologici può consentire alle persone con LM di compiere le attività della vita quotidiana, che altrimenti non sarebbero in grado di compiere (115,117,126,132–135). Gli ausili permettono alla persona con LM il raggiungimento di una maggiore indipendenza ed autonomia nella vita 86
quotidiana, ad es. le carrozzine permettono alle persone con LM di muoversi nel proprio ambiente (136). I sistemi di controllo ambientale possono permettere alle persone di controllare i dispositivi nel loro ambiente circostante, come la televisione, il computer, il telefono, le luci e le porte (131). Uno studio canadese ha rilevato che le persone che utilizzavano sistemi di controllo ambientale avevano maggiori abilità funzionali nel 75% dei
Capitolo 4 Sistema sanitario e bisogni riabilitativi
compiti associati alle attività quotidiane, con impatto psico-sociale molto positivo sulle loro vite (137). L’uso delle tecnologie di supporto è stato correlato ad una maggiore partecipazione alla vita di comunità, sociale e civile (138–140). Le tecnologie di supporto possono svolgere un ruolo fondamentale per i bambini con LM nel promuovere l’apprendimento e lo sviluppo (141) e per consentire la mobilità, l’istruzione e le relazioni sociali (142). Le tecnologie possono infine contribuire al reinserimento nel mondo del lavoro (117) e possono aiutare ad assicurare il pieno reinserimento ed inclusione sociale delle persone con LM (122,133). Le tecnologie di supporto possono anche migliorare la qualità della vita. Ad esempio, ci sono studi che hanno dimostrato che l’utilizzo dei sistemi di controllo ambientale ha un effetto positivo sulla percezione dell’utente riguardo la propria competenza, adattabilità e autostima (137,143), portando a livelli più alti di soddisfazione, legata alla propria qualità di vita rispetto a coloro che non li utilizzano (144). Le persone con LM che non utilizzano tecnologie di supporto possono riscontrare limitazioni funzionali e maggiore dipendenza dagli altri per l’assistenza (144). Gli ausili possono ridurre il livello di dipendenza dai caregiver (145), riducendo inoltre lo sforzo fisico ed i tempi necessari per le attività di assistenza (132), come riportato dagli assistenti dei bambini con patologie neuromuscolari in Guatemala (139). I benefici economici derivanti dagli ausili includono la riduzione dei costi derivanti dall’assistenza dei familiari, come la perdita economica da impossibilità di mantenere un lavoro, ed il costo dei servizi assistenziali stipendiati (44,132,146,147).
Conservazione dello stato di salute Come descritto nel Capitolo 2, l’aspettativa di vita delle persone con LM è progressivamente aumentata nel tempo come risultato dei progressi della medicina e dell’aumento dell’accessibilità
ai servizi sanitari, alla riabilitazione ed ai servizi di assistenza sociale (148–150). Mentre nei paesi sviluppati l’aspettativa di vita comincia ad avvicinarsi a quella della popolazione generale, nei paesi in via di sviluppo il divario è ancora ampio, dato che i tassi di morbilità e mortalità hanno una probabilità elevata di rimanere alti senza maggiori investimenti. Vi sono evidenze che, come popolazione, le persone affette da disabilità abbiano indicatori di salute peggiori rispetto alla popolazione generale (44). Questo è vero anche per le persone con LM, le quali verificano su se stesse ciò che è spesso indicato come un margine di salute “più stretto o più sottile”. Questo è fortemente influenzato dal tipo di LM, ovvero dalla gravità e dal livello della lesione (150). Come indicato in precedenza, le persone con LM sono ad alto rischio di sviluppare complicanze secondarie come polmoniti, lesioni da pressione e infezioni vescica-uretrali(49,151). Queste patologie spesso richiedono ospedalizzazione e possono comportare costi maggiori per l’assistenza sanitaria, la riduzione della capacità lavorativa, la perdita in qualità della vita e la riduzione dell’aspettativa di vita (49,152–155). Le persone con LM sono anche sottoposte allo stesso rischio di insorgenza di patologie croniche della popolazione generale, quali per esempio malattie cardiache, ictus, diabete. Tuttavia, ci sono evidenze che le persone con LM potrebbero avere una prevalenza più elevata per queste malattie rispetto alla popolazione generale (156–160). In Australia la cardiopatia ischemica è stata riconosciuta come la causa principale di morte nella popolazione con LM, con una frequenza notevolmente più elevata rispetto alla popolazione generale (157). I fattori di rischio di insorgenza di patologie croniche nella popolazione con LM potrebbero essere legate a cambiamenti nella composizione corporea, quali la riduzione di massa muscolare e l’incremento di tessuto adiposo, livelli di attività ridotti in seguito alla paralisi, disfunzione autonomica, e cambiamenti metabolici (152,156,158,161). Potrebbero anche esserci collegamenti ad altri 87
Prospettive Internazionali sulla lesione del midollo spinale
fattori di rischio, come dieta scorretta, fumo e abuso di alcolici, che possono essere più presenti nella popolazione con LM (159,162,163). Per garantire la conservazione di un buon stato di salute a lungo termine nella popolazione affetta da LM bisogna riconoscere che: (i) vi sono rischi di problemi di salute specificatamente legati alla LM, con necessità di accesso continuativo a servizi sanitari generici e specialistici (151); e (ii) vi sono anche rischi di sviluppare gli stessi problemi di salute che interessano la popolazione generale, con conseguente necessità di accesso a servizi legati alla promozione della salute, di medicina preventiva (vaccinazioni, screening
sanitari), e a trattamenti per le malattie acute e croniche (44). La pratica di un’attività fisica apporta benefici per la salute ed il benessere della persona, sebbene l’adesione ad un programma regolare di allenamento possa essere difficile da mantenere (164) soprattutto in presenza di barriere architettoniche, visto il loro collegamento con la riduzione dell’attività fisica (165). La Tabella 4.3 descrive alcune azioni specifiche e generali per la conservazione dello stato di salute riferibili alle persone con LM. È da notare che questa tabella fornisce solo una panoramica e che bisogna fare riferimento alle linee guida specifiche ed agli standard dei vari paesi.
Tabella 4.3 Esempi di azioni per la conservazione dello stato di salute Area di salute Genito-urinaria Azione Rivalutare regolarmente il programma di gestione della vescica. Verificare eventuali cambiamenti nella funzione vescico-sfinterica (ad es. ritenzione urinaria, episodi di incontinenza, IVU, ematuria). Controllare regolarmente la funzionalità renale. Effettuare regolari controlli ecografici dell’apparato urinario. Negli uomini eseguire regolarmente esami per lo screening del cancro alla prostata. Rivalutare regolarmente i programmi di gestione dell’intestino. Verificare se ci sono cambiamenti della funzionalità intestinale (ad es. stipsi, diarrea). Eseguire regolarmente esame digitale del retto a partire dalla mezza età. Incoraggiare l’assunzione di una dieta ricca di fibre ed un apporto giornaliero regolare di liquidi (acqua). Eseguire un regolare monitoraggio della funzione intestinale, includendo la frequenza di evacuazione, la valutazione del colore e consistenza delle feci. Controllare regolarmente i valori di colesterolo e lipidi, monitorare la pressione arteriosa. Rivalutare la presenza di fattori di rischio (quali dieta scorretta e fumo). Fornire istruzione e supporto per controllare i fattori di rischio. Incoraggiare il regolare esercizio aerobico ogni settimana. Monitorare ed analizzare gli aspetti psicosociali (ad es. depressione) Rivalutare la capacità dei caregiver di fornire e garantire il supporto. Fornire educazione e strumenti di supporto su alimentazione ed esercizio appropriato. Incoraggiare la partecipazione alla vita sociale. Rivalutare la funzione neuro-muscolo-scheletrica, soprattutto se ci sono cambiamenti nella sensibilità, nella forza o nel tono muscolare, nell’ampiezza di movimento delle articolazioni, o nel dolore. Educare sulla prevenzione di lesioni dovute al sovraccarico funzionale, in particolare negli arti superiori. Incoraggiare il regolare esercizio settimanale. Rivalutare gli ausili per verificarne l’appropriatezza per dimensioni e per funzione.
Intestinale
Cardiovascolare
Salute mentale e benessere
Neurologica / muscolo-scheletrica
…continua
88
Capitolo 4 Sistema sanitario e bisogni riabilitativi
…seguito della pagina precedente Area di salute Respiratoria Azione Educare sulle strategie per prevenire e gestire le infezioni. Eseguire regolarmente valutazioni respiratorie (ad es. capacità vitale, picco di flusso). Vaccinare contro l’influenza e la polmonite da pneumococco. Incoraggiare la cessazione dal fumo. Eseguire pap test e visita ginecologica per le donne. Eseguire esame mammografico per le donne. Educare su come eseguire il controllo cutaneo quotidiano. Fornire consigli sulla alimentazione appropriata. Educare sulla necessità dei cambi posturali ogni due ore. Rivalutare gli ausili regolarmente per verificare l’appropriatezza per dimensioni e funzione (ad es. carrozzine/sistemi di seduta).
Funzione sessuale e riproduttiva Cute
Fonti: (47,76,95,152,156,157,159,164)
Tutti gli operatori sanitari, le persone con LM ed i loro familiari dovrebbero essere coinvolti nello sviluppo e nell’implementazione di un piano per la conservazione dello stato di salute.
■ Le conseguenze pratiche e politiche dell’a-
Conclusioni e raccomandazioni La disponibilità di assistenza medica e riabilitativa (includendo le tecnologie di supporto) appropriate e tempestive può avere un effetto significativo sulla mortalità, morbilità e disabilità nelle persone con LM. L’accesso all’assistenza sanitaria generale e specialistica può portare le persone con LM a migliori risultati funzionali e ad una vita produttiva e soddisfacente. Va sottolineato che questo capitolo vuole fornire solo una ampia panoramica dei bisogni sanitari delle persone con LM. Se si avesse necessità di una guida clinica completa, sarebbe necessario ricavarla da pubblicazioni specializzate, libri di testo medici/riabilitativi, manuali e linee guida, operatori sanitari esperti in materia e organizzazioni professionali, adattandole per l’uso in ogni nazione e contesto specifico. Il Capitolo 5 valuta che cosa ogni nazione può fare per migliorare la capacità del proprio sistema sanitario nel soddisfare le esigenze delle persone con LM.
■
■
■ ■
■
nalisi delle necessità sanitarie delle persone con LM fornite nel Capitolo 4 si traducono nella necessità di affrontare le seguenti problematiche. Vi è la necessità di un accesso tempestivo ai servizi sanitari specializzati immediatamente dopo l’evento lesivo per affrontare i complessi problemi associati alla LM e per preservare la funzione neurologica laddove sia possibile. L’accesso alla riabilitazione dovrebbe avvenire il prima possibile, ovvero durante la fase acuta della lesione, e garantito in maniera continuativa per massimizzare i risultati funzionali e facilitare il ritorno alla vita quotidiana. L’accesso alle tecnologie di supporto sarà utile nell’accompagnare le modifiche funzionali e massimizzerà l’autonomia. Dovrebbero essere garantiti servizi di follow-up per affrontare i problemi che potrebbero insorgere dopo la dimissione dai servizi di riabilitazione, in particolare nei primi 12 mesi dall’evento lesivo. E’ necessario riconoscere che le persone con LM sono ad alto rischio di complicanze secondarie, come la polmonite, le infezioni del tratto urinario e le lesioni da pressione, e
89
Prospettive Internazionali sulla lesione del midollo spinale
quindi necessitano dell’accesso all’assistenza sanitaria generale e specializzata. ■ Le persone con LM necessitano inoltre di accedere ai servizi sanitari generali – comprendendo la promozione della salute, la prevenzione e l’assistenza sanitaria – per affrontare malattie acute e croniche che sono presenti anche nella popolazione generale. ■ Un approccio coordinato, integrato e multidisciplinare che include le persone con LM
ed i loro familiari, aiuterà ad assicurare un passaggio graduale tra le attività in regime di ricovero, ambulatoriale e territoriale. ■ Le persone con LM ed i loro familiari devono essere educate e responsabilizzate per garantire che siano in grado di prendersi cura della propria salute nella maggior misura possibile. ■ E’ necessaria una ricerca clinica costante per identificare le misure riabilitative migliori per recuperare la funzione nei diversi ambiti.
Referenze 1. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 2. Kirshblum SC et al. International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 2011, 34:535-546. doi: http://dx.doi.org/10.1179/204577211X13207446293695 PMID:22330108 3. Alexander MS et al. International standards to document remaining autonomic function after spinal cord injury. Spinal Cord, 2009, 47:36-43. doi: http://dx.doi.org/10.1038/sc.2008.121 PMID:18957962 4. WHO. International classification of functioning, disability and health. Geneva, World Health Organization, 2001. 5. Krassioukov A et al. A systematic review of the management of orthostatic hypotension after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:876-885. doi: http://dx.doi.org/10.1016/j.apmr.2009.01.009 PMID:19406310 6. Consortium for Spinal Cord Medicine. Autonomic dysreflexia: what you should know. Washington, DC, Paralyzed Veterans of America, 1997. 7. Krassioukov A et al. Autonomic dysreflexia following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–33 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 8. Teasell RW et al. Venous thromboembolism following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 9. Geerts WH et al. Prevention of venous thromboembolism: American College of Chest Physicians evidence-based clinical practice guidelines, 8th ed. Chest, 2008, 133(6):381S–453S. 10. Illman A, Stiller K, Williams M. The prevalence of orthostatic hypotension during physiotherapy treatment in patients with an acute spinal cord injury. Spinal Cord, 2000, 38:741-747. doi: http://dx.doi.org/10.1038/sj.sc.3101089 PMID:11175374 11. Claydon VE, Krassioukov A. Orthostatic hypotension and autonomic pathways after spinal cord injury. Journal of Neurotrauma, 2006, 23:1713-1725. doi: http://dx.doi.org/10.1089/neu.2006.23.1713 PMID:17184183 12. Krassioukov A et al. Orthostatic hypotension following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–20. (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 13. Bryce T. Spinal Cord Injury. New York, Demos Medical, 2010. 14. Cardenas DD et al. Impact of urinary tract infection educational program in persons with spinal cord injury. The Journal of Spinal Cord Medicine, 2004, 27:47-54. PMID:15156937 15. Consortium for Spinal Cord Medicine. Bladder management for adults with spinal cord injury: a clinical practice guideline for healthcare providers. Washington, DC, Paralyzed Veterans of America, 2006. 16. Wolfe DL et al. Bladder health and function following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 17. National Institute on Disability and Rehabilitation Research. The prevention and management of urinary tract infections among people with spinal cord injuries. National Institute on Disability and Rehabilitation Research Consensus Statement. January 27−29 1992. The Journal of the American Paraplegia Society, 1992, 15:194-204. PMID:1500945
90
Capitolo 4 Sistema sanitario e bisogni riabilitativi
18. Hsieh JTC et al. Spasticity following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 19. Harvey L. Management of spinal cord injury: a guide for physiotherapists. London, Elsevier, 2008. 20. Katalinic OM et al. Stretch for the treatment and prevention of contractures [review]. Cochrane database of systematic reviews (Online), 2010, (9):CD007455. PMID:20824861 21. Ashe MC et al. Bone health following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–26. 22. Craven BC et al. Detection and treatment of sublesional osteoporosis among patients with chronic spinal cord injury: proposed paradigms. Topics in Spinal Cord Injury Rehabilitation, 2009, 14:1-22. doi: http://dx.doi.org/10.1310/sci1404-1 23. Eser P et al. Bone loss and steady state after spinal cord injury: a cross-sectional study using pQCT. Journal of Musculoskeletal & Neuronal Interactions, 2004, 4:197-198. PMID:15615125 24. Frey-Rindova P et al. Bone mineral density in upper and lower extremities during 12 months after spinal cord injury measured by peripheral quantitative computed tomography. Spinal Cord, 2000, 38:26-32. doi: http://dx.doi.org/10.1038/sj.sc.3100905 PMID:10762194 25. Biering-Sørensen F et al. Non-pharmacological treatment and prevention of bone loss after spinal cord injury: a systematic review. Spinal Cord, 2009, 47:508-518. doi: http://dx.doi.org/10.1038/sc.2008.177 PMID:19172152 26. Teasell RW et al. Heterotopic ossification following spinal cord injury. Syringomyelia following spinal cord injury. In: Eng JJ et al, eds. Spinal cord injury rehabilitation evidence, version 4. Vancouver, SCIRE, 2012. (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 27. Winslow C, Rozovsky J. Effect of spinal cord injury on the respiratory system. American Journal of Physical Medicine & Rehabilitation, 2003, 82:803-814. doi: http://dx.doi.org/10.1097/01.PHM.0000078184.08835.01 PMID:14508412 28. Zimmer MB, Nantwi K, Goshgarian H. Effect of spinal cord injury on the respiratory sysem: basic research and current clinical treatment options. The Journal of Spinal Cord Medicine, 2007, 30:319-330. PMID:17853653 29. Sheel AW et al. Respiratory management. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence,Volume 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–46 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 30. Consortium for Spinal Cord Medicine. Respiratory management following spinal cord injury: a clinical practice guideline for healthcare professionals. Washington, DC, Paralyzed Veterans of America, 2005. 31. Onders RP. Complete worldwide operative experience in laparoscopic diaphragm pacing: results and differences in spinal cord injured patients and amyotrophic lateral sclerosis patients. Surgical Endoscopy, 2009, 23:1433-1440. doi: http://dx.doi.org/10.1007/ s00464-008-0223-3 PMID:19067067 32. Brown R et al. Respiratory dysfunction and management in spinal cord injury. Respiratory Care, 2006, 51:853-868. PMID:16867197 33. Baastrup C, Finnerup N. Pharmacological management of neuropathic pain following spinal cord injury. CNS Drugs, 2008, 22:455475. doi: http://dx.doi.org/10.2165/00023210-200822060-00002 PMID:18484790 34. Cardenas DD, Jensen M. Treatments for chronic pain in persons with spinal cord injury: a survey study. The Journal of Spinal Cord Medicine, 2006, 29:109-117. PMID:16739554 35. Dijkers M et al. Prevalence of chronic pain after traumatic spinal cord injury: a systematic review. Journal of Rehabilitation Research and Development, 2009, 46:13-29. doi: http://dx.doi.org/10.1682/JRRD.2008.04.0053 PMID:19533517 36. Bryce TN et al. International spinal cord injury pain classification: Part I: background and description. [Epub ahead of print]Spinal Cord, 2012, PMID:22182852 37. Bryce TN et al. International spinal cord injury pain (ISCIP) classification: Part 2: initial validation using vignettes. [Epub ahead of print]Spinal Cord, 2012, PMID:22310319 38. Finnerup NB, Baastrup C, Jensen TS. Neuropathic pain following spinal cord injury pain: mechanisms and treatment. Scandinavian Journal of Pain, 2009, 1 S1:S3-S11. doi: http://dx.doi.org/10.1016/S1877-8860(09)70003-5 39. Turner JA, Cardenas DD, Warms CA, McClellan CB. Chronic pain associated with spinal cord injuries: a community survey. Archives of Physical Medicine and Rehabilitation, 2001, 82:501-509. doi: http://dx.doi.org/10.1053/ apmr.2001.21855 PMID:11295011 40. Cardenas DD et al. Gender and minority differences in the pain experience of people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1774-1781. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.027 PMID:15520972 41. Jensen MP et al. The impact of neuropathic pain on health-related quality of life: review and implications. Neurology, 2007, 68:1178-1182. doi: http://dx.doi.org/10.1212/01.wnl.0000259085.61898.9e PMID:17420400
91
Prospettive Internazionali sulla lesione del midollo spinale
42. Sawatzky B et al. Classification and measurement of pain in the spinal cord-injured population. Spinal Cord, 2008, 46:2-10. doi: http://dx.doi.org/10.1038/sj.sc.3102137 PMID:17968403 43. United States Congress. Assistive Technology Act. United States Congress 2004 (Public Law 108–364) (http://www.ataporg.org/ summaryact.html, accessed 2 August 2011). 44. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/ publications/2011/9789240685215_eng.pdf, accessed 10 May 2012). 45. WHO. Consensus conference on wheelchairs for developing countries, Bengaluru, India, 6−11 November 2006 http://www.who. int/disabilities/technology/Wheelchair%20Consensus%20Conference%20Report_Jan08.pdf, accessed 29 May 2012). 46. Consortium for Spinal Cord Medicine. Pressure ulcer prevention and treatment following spinal cord injury: a clinical practice guideline for health care professionals. Washington, DC, Paralyzed Veterans of America, 2000. 47. Regan M et al. Pressure ulcers following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4, Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 48. Tharion G et al. Guidelines for care of persons with spinal cord injury in the community. Vellore, Christian Medical College, 2009. 49. Cardenas DD et al. Etiology and incidence of re-hospitalization after traumatic spinal cord injury: a multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2004, 85:1757-1763. doi: http://dx.doi.org/10.1016/j.apmr.2004.03.016 PMID:15520970 50. Gélis A et al. Therapeutic education in persons with spinal cord injury: a review of the literature. Annals of Physical and Rehabilitation Medicine, 2011, 54:189-210. doi: http://dx.doi.org/10.1016/j.rehab.2011.03.004 PMID:21530443 51. Consortium for Spinal Cord Medicine. Early acute management in adults with spinal cord injury: a clinical practice guideline for health-care providers. Washington, DC, Paralyzed Veterans of America, 2008. 52. Bernhard M et al. Spinal cord injury (SCI): prehospital management. Resuscitation, 2005, 66:127-139. doi: http://dx.doi. org/10.1016/j.resuscitation.2005.03.005 PMID:15950358 53. Harris MB, Sethi RK. The initial assessment and management of the multiple-trauma patient with an associated spinal injury. Spine, 2006, 31:S9-S15. doi: http://dx.doi.org/10.1097/01.brs.0000217924.56853.0d PMID:16685243 54. WHO. Guidelines for essential trauma care. Geneva, World Health Organization, 2004. 55. WHO. Prehospital trauma care systems. Geneva, World Health Organization, 2005. 56. Fehlings MG et al. Early versus delayed decompression for traumatic cervical spinal cord injury: results of Surgical Timing in Acute Spinal Cord Injury Study (STASCIS). PLoS ONE, 2012, 7: doi: http://dx.doi.org/10.1371/journal. pone.0032037 PMID:22384132 57. Bagnall AM et al. Spinal fixation surgery for acute traumatic spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (1):CD004725. PMID:18254059 58. Fehlings M, Perrin R. The role and timing of early decompression for cervical spinal cord injury: update with a review of recent clinical evidence. Injury, 2005, 36:S13-S26. doi: http://dx.doi.org/10.1016/j.injury.2005.06.011 59. Fehlings MG. The timing of surgical intervention in the treatment of spinal cord injury: a systematic review of recent clinical evidence. Spine, 2006, 31:S28-S35. doi: http://dx.doi.org/10.1097/01.brs.0000217973.11402.7f PMID:16685233 60. Rechtine GR. Nonoperative management and treatment of spinal injuries. Spine, 2006, 31 Suppl:S22-S27. doi: http://dx.doi. org/10.1097/01.brs.0000217947.43730.a6 PMID:16685232 61. Wood K et al. Operative compared with nonoperative treatment of a thoracolumbar burst fracture without neurological deficit. A prospective, randomized study. The Journal of Bone and Joint Surgery, 2003, 85-A:773-781. PMID:12728024 62. Harrop JS et al. Neurological manifestations of cervical spondylosis: an overview of signs, symptoms, and pathophysiology. Neurosurgery, 2007, 60 Supp1 1;S14–S20. doi:10.1227/01.NEU.0000215380.71097.EC doi: http://dx.doi.org/10.1227/01. NEU.0000215380.71097.EC PMID:17204875 63. Vanichkachorn JS, Vaccaro AR. Thoracic disk disease: diagnosis and treatment. The Journal of the American Academy of Orthopaedic Surgeons, 2000, 8:159-169. PMID:10874223 64. NCC-C. Metastatic spinal cord compression: diagnosis and management of patients at risk of or with metastatic spinal cord compression. Cardiff, National Collaborating Centre for Cancer, 2008. 65. Lederle FA et al. Outcomes following endovascular vs open repair of abdominal aortic aneurysm: a randomized trial. Journal of the American Medical Association, 2009, 302:1535-1542. doi: http://dx.doi.org/10.1001/jama.2009.1426 PMID:19826022 66. Wang VY, Chou D, Chin C. Spine and spinal cord emergencies: vascular and infectious causes. Neuroimaging Clinics of North America, 2010, 20:639-650. doi: http://dx.doi.org/10.1016/j.nic.2010.07.006 PMID:20974380 67. Quiñones-Hinojosa A et al. General principles in the medical and surgical management of spinal infections: a multidisciplinary approach. Neurosurgical Focus, 2004, 17:E1-E15. PMID:15636566 68. Anderson KD. Targeting recovery: priorities of the spinal cord injured population. Journal of Neurotrauma, 2004, 21:1371-1383. doi: http://dx.doi.org/10.1089/neu.2004.21.1371 PMID:15672628
92
Capitolo 4 Sistema sanitario e bisogni riabilitativi
69. Anderson KD et al. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 2007, 45:328-337. PMID:17033620 70. Ditunno PL et al. Who wants to walk? Preferences for recovery after SCI: a longitudinal and cross-sectional study. Spinal Cord, 2008, 46:500-506. doi: http://dx.doi.org/10.1038/sj.sc.3102172 PMID:18209742 71. Snoek GJ et al. Survey of the needs of patients with spinal cord injury: impact and priority for improvement in hand function in tetraplegics. Spinal Cord, 2004, 42:526-532. doi: http://dx.doi.org/10.1038/sj.sc.3101638 PMID:15224087 72. Chang SM et al. Urologic status of 74 spinal cord injury patients from the 1976 Tangshan earthquake, and managed for over 20 years using the Crede maneuver. Spinal Cord, 2000, 38:552-554. doi: http://dx.doi.org/10.1038/sj.sc.3101060 PMID:11035477 73. Weld KJ, Dmochowski RR. Effect of bladder management on urological complications in spinal cord injured patients. The Journal of Urology, 2000, 163:768-772. doi: http://dx.doi.org/10.1016/S0022-5347(05)67800-7 PMID:10687973 74. Wyndaele JJ. Intermittent catheterization: which is the optimal technique? Spinal Cord, 2002, 40:432-437. doi: http://dx.doi. org/10.1038/sj.sc.3101312 PMID:12185603 75. Correa GI, Rotter KP. Clinical evaluation and management of neurogenic bowel after spinal cord injury. Spinal Cord, 2000, 38:301308. doi: http://dx.doi.org/10.1038/sj.sc.3100851 PMID:10822403 76. Consortium for Spinal Cord Medicine. Neurogenic bowel management in adults with spinal cord injury. Washington, DC, Paralyzed Veterans of America, 1998. 77. Krassioukov A et al. Neurogenic bowel following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–41 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 78. Yasmeen R et al. How do patients with chronic spinal injury in Pakistan manage their bowels? A cross-sectional survey of 50 patients. Spinal Cord, 2010, 48:872-875. doi: http://dx.doi.org/10.1038/sc.2010.46 PMID:20440300 79. Ayaş S et al. The effect of abdominal massage on bowel function in patients with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2006, 85:951-955. doi: http://dx.doi.org/10.1097/01.phm.0000247649.00219.c0 PMID:17117000 80. Branagan G et al. Effect of stoma formation on bowel care and quality of life in patients with spinal cord injury. Spinal Cord, 2003, 41:680-683. doi: http://dx.doi.org/10.1038/sj.sc.3101529 PMID:14639447 81. Coggrave M et al. Progressive protocol in the bowel management of spinal cord injuries. British Journal of Nursing, 2006, 15:11081113. PMID:17170659 82. Consortium for Spinal Cord Medicine. Sexuality and reproductive health in adults with spinal cord injury: a clinical practice guideline for health-care professionals. Washington, DC, Paralyzed Veterans of America, 2010. 83. Kreuter M, Siosteen A, Biering-Sorensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. Journal of Rehabilitation Medicine, 2008, 40:61-69. doi: http://dx.doi.org/10.2340/16501977-0128 PMID:18176739 84. Kreuter M et al. Women’s sexual functioning and sex life after spinal cord injury. Spinal Cord, 2011, 49:154-160. doi: http://dx.doi. org/10.1038/sc.2010.51 PMID:20458327 85. Sipski ML, Richards JS. Spinal cord injury rehabilitation. American Journal of Physical Medicine & Rehabilitation, 2006, 85:310-342. doi: http://dx.doi.org/10.1097/01.phm.0000202105.87011.bf PMID:16554684 86. Burns AS, Ditunno J. Establishing prognosis and maximizing functional outcomes after spinal cord injury. Spine, 2001, 26 Suppl:S137-S145. doi: http://dx.doi.org/10.1097/00007632-200112151-00023 PMID:11805621 87. Kirshblum S et al. Rehabilitation of Spinal Cord Injury. In: Campagnolo D et al., eds. Spinal Cord Medicine. 2nd ed. Philadelphia, PA, Lippincott Williams & Wilkins, 2011: 312-313. 88. Beekhuizen KS, Field-Fote EC. Sensory stimulation augments the effects of massed practice training in persons with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2008, 89:602-608. doi: http://dx.doi.org/10.1016/j. apmr.2007.11.021 PMID:18373988 89. Connolly SJ et al. Upper limb rehabilitation following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 90. Kloosterman MGM, Snoek GJ, Jannink NJA. Systematic review of the effects of exercise therapy on the upper extremity of patients with spinal-cord injury. Spinal Cord, 2009, 47:196-203. doi: http://dx.doi.org/10.1038/sc.2008.113 PMID:18825160 91. Lam T et al. Lower limb rehabilitation following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–47 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 92. Mehrholz J et al. Locomotor training for walking after spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (2):CD006676. PMID:18425962 93. Kreutz D. Standing frames and standing wheelchairs: implications for standing. Topics in Spinal Cord Injury Rehabilitation, 2000, 5:24-28. doi: http://dx.doi.org/10.1310/P8YC-WGEH-C1VP-2VC1
93
Prospettive Internazionali sulla lesione del midollo spinale
94. Shields RK, Dudley-Javoroski S. Musculoskeletal plasticity after acute spinal cord injury: effects of long-term neuromuscular electrical stimulation training. Journal of Neurophysiology, 2006, 95:2380-2390. doi: http://dx.doi.org/10.1152/jn.01181.2005 PMID:16407424 95. Wolfe DL et al. Physical activity and SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 96. Borg J, Lindström A, Larsson S. Assistive technology in developing countries: a review from the perspective of the Convention on the Rights of Persons with Disabilities. Prosthetics and Orthotics International, 2011, 35:20-9. doi: http://dx.doi. org/10.1177/0309364610389351 PMID:21515886 97. Bryden AM et al. Perceived outcomes and utilization of upper extremity surgical reconstruction in individuals with tetraplegia at model spinal cord injury systems. Spinal Cord, 2004, 42:169-176. doi: http://dx.doi.org/10.1038/sj.sc.3101579 PMID:14758349 98. Wuolle KS et al. Satisfaction with upper-extremity in individuals with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2003, 84:1145-1149. doi: http://dx.doi.org/10.1016/S0003-9993(03)00292-2 PMID:12917852 99. Snoek GJ et al. Decision for reconstructive interventions of the upper limb in individuals with tetraplegia: the effect of treatment characteristics. Spinal Cord, 2008, 46:228-233. doi: http://dx.doi.org/10.1038/sj.sc.3102110 PMID:17680013 100. Bombardier CH et al. Do preinjury alcohol problems predict poorer rehabilitation progress in persons with spinal cord injury? Archives of Physical Medicine and Rehabilitation, 2004, 85:1488-1492. doi: http://dx.doi.org/10.1016/j.apmr.2003.10.010 PMID:15375822 101. Fann JR et al. Depression after spinal cord injury: comorbidities, mental health service use, and adequacy of treatment. Archives of Physical Medicine and Rehabilitation, 2011, 92:352-360. doi: http://dx.doi.org/10.1016/j.apmr.2010.05.016 PMID:21255766 102. Hastings J et al. The differences in self-esteem, function, and participation between adults with low cervical motor tetraplegia who use power or manual wheelchairs. Archives of Physical Medicine and Rehabilitation, 2011, 92:1785-1788. doi: http://dx.doi. org/10.1016/j.apmr.2011.03.023 PMID:21762872 103. Krause JS. Depression after spinal cord injury: relation to gender, ethnicity, ageing and socioeconomic indicators. Archives of Physical Medicine and Rehabilitation, 2000, 81:1099-1109. doi: http://dx.doi.org/10.1053/apmr.2000.7167 PMID:10943762 104. Kennedy P, Evans M, Sandhu N. Psychological adjustment to spinal cord injury: the contribution of coping, hope and cognitive appraisals. Psychology Health and Medicine, 2009, 14:17-33. doi: http://dx.doi.org/10.1080/13548500802001801 PMID:19085309 105. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http://dx.doi. org/10.1038/sc.2011.182 106. Consortium for Spinal Cord Medicine. Depression following spinal cord injury: a clinical practice guideline for primary care physicians. Paralyzed Veterans of America, 1998. 107. Kennedy P et al. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injury. The British Journal of Clinical Psychology, 2003, 42:41-52. doi: http://dx.doi.org/10.1348/014466503762842002 PMID:12675978 108. Boschen KA, Tonack M, Gargaro J. Long-term adjustment and community reintegration following spinal cord injury. International Journal of Rehabilitation Research, 2003, 26:157-164. doi: http://dx.doi.org/10.1097/00004356-200309000-00001 PMID:14501566 109. Kroll T, ed. Focus on disability: trends in research and application. Hauppauge, NY, Nova Science Publishers, 2008. 110. Ljungberg I et al. Using peer mentoring for people with spinal cord injury to enhance self-efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 2011, 20:351-358. doi: http://dx.doi.org/10.1111/j.13652702.2010.03432.x PMID:21219518 111. Sherman JE, DeVinney DJ, Sperling KB. Social support and adjustment after spinal cord injury: influence of past peermentoring experiences and current live-in partner. Rehabilitation Psychology, 2004, 49:140-149. doi: http://dx.doi. org/10.1037/0090-5550.49.2.140 112. Tate DG, Boninger ML, Jackson AB. Future directions for spinal cord injury research: recent developments and model systems contributions. Archives of Physical Medicine and Rehabilitation, 2011, 92:509-515. doi: http://dx.doi.org/10.1016/j.apmr.2010.07.243 PMID:21353833 113. Bergström AL, Samuelsson K. Evaluation of manual wheelchairs by individuals with spinal cord injuries. Disability and Rehabilitation. Assistive Technology, 2006, 1:175-182. doi: http://dx.doi.org/10.1080/17483100600573230 PMID:19260185 114. Sisto SA, Forrest GF, Faghri PD. Technology for mobility and quality of life in spinal cord injury: analyzing a series of options available. IEEE Engineering in Medicine and Biology Magazine, 2008, 27:56-68. doi: http://dx.doi.org/10.1109/EMB.2007.907398 PMID:18463021 115. Biering-Sørensen F, Hansen RB, Biering-Sørensen J. Mobility aids and transport possibilities 10–45 years after spinal cord injury. Spinal Cord, 2004, 42:699-706. doi: http://dx.doi.org/10.1038/sj.sc.3101649 PMID:15289807 116. Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 2001, 15:600-606. doi: http://dx.doi.org/10.1191/0269215501cr453oa PMID:11777090
94
Capitolo 4 Sistema sanitario e bisogni riabilitativi
117. Hedrick B et al. Employment issues and assistive technology use for persons with spinal cord injury. Journal of Rehabilitation Research and Development, 2006, 43:185-198. doi: http://dx.doi.org/10.1682/JRRD.2005.03.0062 PMID:16847785 118. Phillips B, Zhao H. Predictors of assistive technology abandonment. Assistive Technology, 1993, 5:36-45. doi: http://dx.doi.org/10.1 080/10400435.1993.10132205 PMID:10171664 119. Dieruf K, Ewer L, Boninger D. The natural-fit handrim: factors related to improvement in symptoms and function in wheelchair users. The Journal of Spinal Cord Medicine, 2008, 31:578-585. PMID:19086716 120. Ayyappa MS, Downs K. Spinal orthoses in spinal cord medicine: principles and practice. New York, Demos Medical Publishing Inc., 2003. 121. Yamane A. Lower limb orthoses and rehabilitation. New York, NY, Demos Medical Publishing Inc, 2003. 122. Scherer MJ, Cushman LA. Measuring subjective quality of life following spinal cord injury: a validation study of the assistive technology device predisposition assessment. Disability and Rehabilitation, 2001, 23:387-393. doi: http://dx.doi. org/10.1080/09638280010006665 PMID:11394589 123. Chen YL et al. A head orientated wheelchair for people with disabilities. Disability and Rehabilitation, 2003, 25:249-253. doi: http://dx.doi.org/10.1080/0963828021000024979 PMID:12623613 124. Regan MA et al. A systematic review of the therapeutic interventions for pressure ulcers after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:213-231. doi: http://dx.doi.org/10.1016/j.apmr.2008.08.212 PMID:19236976 125. Atkins MA, Clark D, Waters RL, eds. Upper limb orthoses in spinal cord medicine: principles and practice. New York, Demos Medical Publishing Inc., 2003. 126. Atkins MS et al. Mobile arm supports: evidence-based benefits and criteria for use. The Journal of Spinal Cord Medicine, 2008, 31:388-393. PMID:18959356 127. Norweg A et al. Patterns, predictors, and associated benefits of driving a modified vehicle after spinal cord injury: findings from the national spinal cord injury model systems. Archives of Physical Medicine and Rehabilitation, 2011, 92:477-483. doi: http:// dx.doi.org/10.1016/j.apmr.2010.07.234 PMID:21353830 128. Bodine C, Buning M. The role of assistive technology in rehabilitation. In: Braddom R, ed. Physical medicine & rehabilitation, 3rd ed. Cambridge, MA, Elsevier, 2005. 129. Goodman N, Jette AM. Computer and Internet use by persons after traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:1492-1498. doi: http://dx.doi.org/10.1016/j.apmr.2007.12.038 PMID:18674985 130. Sears A, Young M. The human-computer interaction handbook: fundamentals, evolving technologies and emerging applications. Hillsdale, NJ, L Erlbaum Associates Inc, 2002. 131. Craig A et al. The effectiveness of a hands-free environmental control system for the profoundly disabled. Archives of Physical Medicine and Rehabilitation, 2002, 83:1455-1458. doi: http://dx.doi.org/10.1053/apmr.2002.34624 PMID:12370885 132. Allen S, Resnik L, Roy J. Promoting independence for wheelchair users: the role of home accommodations. The Gerontologist, 2006, 46:115-123. doi: http://dx.doi.org/10.1093/geront/46.1.115 PMID:16452291 133. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disability and Rehabilitation, 2003, 25:487-490. doi: http://dx.doi.org/10.1080/0963828031000071723 PMID:12745944 134. Driscoll MP, Rodger SA, De Jonge DM. Factors that prevent or assist the integration of assistive technology into the workplace for people with spinal cord injuries: perspectives of the users and their employers and co-workers. Journal of Vocational Rehabilitation, 2001, 16:53-66. 135. Scherer MJ. Living in the state of stuck. How technology impacts the lives of people with disabilities, 3rd edition. Cambridge, MA, Brookline Books, 2000. 136. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. 137. Rigby P et al. Impact of electronic aids to daily living on the lives of persons with cervical spinal cord injuries. Assistive Technology, 2005, 17:89-97. doi: http://dx.doi.org/10.1080/10400435.2005.10132099 PMID:16392713 138. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/oti.228 PMID:17624872 139. Glumac LK et al. Guatemalan caregivers’ perceptions of receiving and using wheelchairs donated for their children. Pediatric Physical Therapy, 2009, 21:167-175. doi: http://dx.doi.org/10.1097/PEP.0b013e3181a34a2b PMID:19440126 140. Rushton PW et al. Satisfaction with participation using a manual wheelchair among individuals with spinal cord injury. Spinal Cord, 2010, 48:691-696. doi: http://dx.doi.org/10.1038/sc.2009.197 PMID:20125106
95
Prospettive Internazionali sulla lesione del midollo spinale
141. Judge S, Floyd K, Jeffs T. Using an assistive technology toolkit to promote inclusion. Early Childhood Education Journal, 2008, 36:121-126. doi: http://dx.doi.org/10.1007/s10643-008-0257-0 142. Ameratunga S et al. Rehabilitation of the injured child. Bulletin of the World Health Organization, 2009, 87:327. doi: http://dx.doi. org/10.2471/BLT.09.057067 PMID:19551242 143. Ripat J. Function and impact of electronic aids to daily living for experienced users. Technology and Disability, 2006, 18:79-87. 144. Rigby P, Ryan SE, Campbell KA. Electronic aids to daily living and quality of life for persons with tetraplegia. Disability and Rehabilitation. Assistive Technology, 2011, 6:260-267. doi: http://dx.doi.org/10.3109/17483107.2010.522678 PMID:20883120 145. Agree EM et al. Reconsidering substitution in long-term care: when does assistive technology take the place of personal care? Journal of Gerontology: Social Sciences, 2005, 60:S272-S280. doi: http://dx.doi.org/10.1093/geronb/60.5.S272 PMID:16131628 146. Field MJ, Jette AM. The future of disability in America. Washington, DC, The National Academies Press, 2007. 147. Schraner I et al. Using the ICF in economic analyses of assistive technology systems: methodological implications of a user standpoint. Disability and Rehabilitation, 2008, 30:916-926. PMID:18484387 148. Yeo JD et al. Mortality following spinal cord injury. Spinal Cord, 1998, 36:329-336. doi: http://dx.doi.org/10.1038/sj.sc.3100628 PMID:9601112 149. DeVivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and causes of death among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1411-1419. doi: http://dx.doi.org/10.1016/S0003-9993(99)90252-6 PMID:10569435 150. Krause JS et al. Health status, community integration, and economic risk factors for mortality after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1764-1773. doi: http://dx.doi.org/10.1016/j.apmr.2004.06.062 PMID:15520971 151. Chiodo AE et al. Spinal cord injury medicine: 5: long-term medical issues and health maintenance. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl. 1:S76-S83. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.015 PMID:17321853 152. Fernhall B et al. Health implications of physical activity in individuals with spinal cord injury: a literature review. Journal of Health and Human Services Administration, 2008,468-502. PMID:18236700 153. Krause JS, Saunders LL. Health, secondary conditions, and life expectancy after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:1770-1775. doi: http://dx.doi.org/10.1016/j.apmr.2011.05.024 PMID:22032212 154. McColl MA et al. Primary care for people with SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–24 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 155. Soden RJ et al. Causes of death after spinal cord injury. Spinal Cord, 2000, 38:604-610. doi: http://dx.doi.org/10.1038/sj.sc.3101080 PMID:11093321 156. Bauman WA, Spungen AM. Coronary heart disease in individuals with spinal cord injury: assessment of risk factors. Spinal Cord, 2008, 46:466-476. doi: http://dx.doi.org/10.1038/sj.sc.3102161 PMID:18180789 157. Engel S, Leong G. Health maintenance for adults with spinal cord injuries: targeting health professionals. Sydney, NSW State Spinal Cord Injury Service, 2008. 158. Myers J, Lee M, Kiratli J. Cardiovascular disease in spinal cord injury: an overview of prevalance, risk, evaluation and management. American Journal of Physical Medicine & Rehabilitation, 2007, 86:142-152. doi: http://dx.doi.org/10.1097/PHM.0b013e31802f0247 PMID:17251696 159. Warburton DER et al. Cardiovascular health and exercise following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–38 (http://www. scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 160. Wahman K et al. Cardiovascular disease risk factors in persons with paraplegia: the Stockholm spinal cord injury study. Journal of Rehabilitation Medicine, 2010, 42:272-278. doi: http://dx.doi.org/10.2340/16501977-0510 PMID:20419873 161. Cowan RE, Nash M. Cardiovascular disease, SCI and exercise: unique risks and focused countermeasures. Disability and Rehabilitation, 2010, 32:2228-2236. doi: http://dx.doi.org/10.3109/09638288.2010.491579 PMID:20524925 162. Johnston MV et al. Preventive services and health behaviors among people with spinal cord injury. The Journal of Spinal Cord Medicine, 2005, 28:43-54. PMID:15832903 163. Krause JS et al. Risk of mortality after spinal cord injury: an 8-year prospective study. Archives of Physical Medicine and Rehabilitation, 2009, 90:1708-1715. doi: http://dx.doi.org/10.1016/j.apmr.2009.04.020 PMID:19801060 164. Ditor DS. Maintenance of exercise participation in individuals with spinal cord injury: effects on quality of life, stress and pain. Spinal Cord, 2003, 41:446-450. doi: http://dx.doi.org/10.1038/sj.sc.3101487 PMID:12883542 165. Fekete C, Rauch A. Correlates and determinants of physical activity in persons with spinal cord injury: a review using the International Classification of Functioning, Disability and Health as reference framework. Disability and Health Journal, 2012, 5:140-150. doi: http://dx.doi.org/10.1016/j.dhjo.2012.04.003 PMID:22726854
96
Capitolo 5 Il rafforzamento dei sistemi sanitari
“Ho subito il trauma nel periodo di tempo in cui l’ospedale principale della mia comunità era in uno stato di rovina. La sala operatoria non funzionava e pertanto l’intervento non poteva aver luogo! La mia famiglia ha tentato di tutto presso l’ospedale per farmi trasferire a un paese vicino ma in vano. Il capo allora dell’ortopedia era così crudele che le sue parole hanno distrutto la mia volontà di combattere. Un giorno egli è entrato nella mia stanza di ospedale e ha convocato i miei genitori bruscamente e ha detto che sarei stata un vegetale per il resto della mia vita e che non avrei potuto sedermi o camminare mai più!” (Angela, Uganda) “Ho avuto un’esperienza positiva con i medici, per esempio, mi hanno dato una spiegazione dettagliata della mia disabilità, che rende più facile per me capire il trauma e affrontarlo, e mi hanno incoraggiato di vivere felicemente la mia disabilità e così convivere con essa in modo positivo. Per me sarà una sfida a lungo termine perché le PLM devono affrontare molte complicanze come lo svuotamento dell’intestino, della vescica ed i movimenti degli arti per cui sarà un compito arduo mantenere la salute”. (Sulieman, Arabia Saudita) “Uno dei problemi principali che ho affrontato dopo aver lasciato il centro riabilitativo era quello di trovare medici che conoscessero i bisogni e i problemi specifici delle PLM. Con gli spasmi è difficile viaggiare, muoversi da un posto ad altro e stare sulla sedia per le visite mediche. Siccome gli spasmi erano meno frequenti la mattina, in genere chiedevo un appuntamento per la mattina, ma non molti studi medici erano disposti a farmi questo favore. Quando finalmente venivo visitato le mie gambe mi ballavano intorno. Un altro problema era la disref lessia autonomica (AD). Quasi il 90% dei medici al di fuori del centro riabilitativo non conosce questo fenomeno. Perciò quasi sempre dovevo spiegare che mi colpisce la AD quando la vescica è piena o mi trovo in una posizione scomoda. Anche dopo la mia spiegazione dimenticavano regolarmente di controllare la vescica e spesso finivo con l’AD. Di solito portavo mio fratello con me per controllare i sintomi dell’AD”. (Alexis, India) “Durante il terremoto nel 2010 a Haiti sono stato colpito da un muro e sono rimasto gravemente lesionato. Le lesioni sono state diagnosticate come tetraplegia a livello C6. Cinque mesi dopo il terremoto sono stato riammesso al Hai Hospital Appeal per la riabilitazione dove ho ricevuto la mia prima carrozzina la quale, però, non era adatta né per la mia taglia (sono molto alto) né per il livello della LM. A Haiti il sistema sanitario non si occupa della fornitura di carrozzine per cui è necessario lottare da solo – e pagare per conto proprio. Un anno dopo l’inizio della LM ho ricevuto una nuova carrozzina manuale da un’organizzazione americana”. (Samuel, Haiti)
5
Il rafforzamento dei sistemi sanitari Il Capitolo 4 dà una visione d’insieme dei bisogni relativi all’assistenza sanitaria, alla riabilitazione e alla tecnologia assistiva delle PLM, mentre questo Capitolo dimostra come i sistemi sanitari possono rispondere a tali bisogni. Attualmente, la risposta dei sistemi sanitari alle PLM è inadeguata in molti paesi e come conseguenza la relativa mortalità è inutilmente alta. Investimenti nei sistemi e nelle competenze appropriate possono permettere alle PLM di sopravvivere, di prosperare e di avere accesso ai propri diritti umani. L’Organizzazione Mondiale della Sanità promuove un approccio di “rafforzamento dei sistemi” per migliore le prestazioni dei sistemi sanitari prendendo in considerazione sei componenti o “blocchi di costruzione”: guida ed organizzazione; l’erogazione del servizio, le risorse umane, le tecnologie sanitarie, i sistemi di informazione e il finanziamento. (1) Mentre questo Capitolo tratta ogni componente separatamente, occorre riconoscere che è la interazione di tali componenti – come pure il coordinamento traversale con altri settori quali l’istruzione, l’occupazione e l’assistenza sociale – che permette alle PLM di accedere all’assistenza di cui hanno bisogno. La lesione midollare è attinente a quasi tutti gli aspetti del sistema sanitario per cui le misure volte a colmare in modo efficace i bisogni delle PLM possono potenzialmente beneficiare non soltanto le persone con disabilità ma anche gli altri utenti del sistema sanitario. Questo Capitolo conclude con una serie di raccomandazioni che offrono consigli generali a paesi disposti a rafforzare i propri sistemi sanitari per poter colmare i bisogni delle PLM.
I bisogni non soddisfatti Assistenza sanitaria Il Rapporto mondiale sulla disabilità rivela che le persone con disabilità cercano più assistenza (ospedaliera e ambulatoriale) delle persone senza disabilità, mentre le persone con disabilità dicono di non ricevere più assistenza delle persone senza disabilità.(2) Per esempio, si constata che le persone con disabilità ricevono meno servizi della popolazione generale per lo screening e
99
Prospettive Internazionali sulla lesione del midollo spinale
per la prevenzione, come le mammografie, i Pap test e i consigli relativi al tabacco. (3,4) Spesso è difficile ottenere dati specifici circa l’uso dei servizi sanitari e circa i bisogni non soddisfatti delle PLM, particolarmente nei paesi a basso reddito. Tuttavia, le prove disponibili confermano i risultati del Rapporto mondiale sulla disabilità il quale dimostra che le PLM spesso hanno bisogni sostanziali non soddisfatti per servizi di controllo (5), nonché per l’assistenza primaria (6) dopo aver completato il periodo iniziale di riabilitazione. Per esempio, uno studio di gruppo realizzato in Canada ha dimostrato che era più probabile per le PLM di avere contatto con il sistema sanitario (e di avere tassi più alti di ricovero in ospedale) durante il periodo di controllo di sei anni rispetto alla popolazione generale. (7) Uno studio danese basato sui registri, che comprendeva pazienti con LM nove anni dopo la lesione, ha rilevato che tali pazienti sono stati ricoverati in ospedale 0,5 volte l’anno, che rappresenta tre volte il numero di ricoveri del gruppo di controllo; gli stessi pazienti con LM si servivano dei medici di base e dei fisioterapisti sei volte più del gruppo di controllo. (8) I bisogni non soddisfatti delle PLM relativi all’assistenza primaria comprendono la promozione della salute, i servizi di prevenzione e le cure mediche. (9) In particolare, scarsa attenzione è data ai bisogni relativi all’informazione e alle preoccupazioni riguardante la salute psicologica, sessuale e riproduttiva. (9) Uno studio condotto nei Paesi Bassi ha dimostrato che le PLM che vivono a casa hanno bisogni significativi di assistenza non soddisfatti che includono l’informazione e l’assistenza psicosociale. I partecipanti allo stesso studio olandese ritenevano che le condizioni secondarie associate con la LM potevano essere in gran parte prevenute. Ad esempio, ritenevano che il 50% delle piaghe da decubito e il 25% dei problemi riguardanti la vescica, l’intestino e la sessualità potevano essere prevenuti, in particolare attraverso l’accesso a cure di qualità ed all’informazione, nonché attraverso l’autogestione della propria salute e del proprio comportamento.(10) 100
Riabilitazione Anche i dati globali sono molto limitati per quanto riguarda i bisogni non soddisfatti per i servizi riabilitativi, compresa la tecnologia assistiva (2). Gli studi nazionali realizzati in Malawi, Mozambico, Namibia, Zambia e Zimbabwe sulle condizioni di vita delle persone con disabilità, tra cui le PLM, indicano che ci sono lacune nell’erogazione dei servizi per la riabilitazione medica e per gli apparecchi assistivi (11–15). In assenza di dati relativi ai bisogni e a quelli non soddisfatti, la ricerca che studia le opinioni dei consumatori e le esperienze riabilitative può essere utile per conoscere se i servizi rispondono o no ai bisogni delle PLM. Queste persone riferiscono che la riabilitazione non le prepara in modo adeguato per la transizione alla vita nella comunità e che ci sono lacune tra le competenze insegnate nell’ambiente riabilitativo e quelle richieste dal “mondo reale” (16, 17). Lo studio dei Paesi Bassi menzionato prima riferisce che il 72% dei partecipanti indicano il bisogno di assistenza aggiuntiva, tra cui la consultazione e la rivalutazione medica presso il centro riabilitativo, la consultazione telefonica e le visite a domicilio (10). La tecnologia assistiva è una questione rilevante: nei paesi a basso e medio reddito è stimato che solamente dal 5 al 15% delle persone con disabilità bisognose di apparecchi assistivi vi ha accesso (18). La ricerca condotta in Africa meridionale citata prima dimostra che solamente dal 17–37% delle persone che dichiarano di aver bisogno di apparecchi assistivi in effetti li ricevono, mentre più uomini che donne riferiscono l’uso di apparecchi assistivi (Malawi: uomini 25,3%, donne 14,1%; Zambia: uomini 15,7%, donne 11,9%), ed una percentuale maggiore di abitanti urbani riporta l’uso di apparecchi assistivi rispetto a quelli rurali . Anche le persone che vivono nei paesi ad alto reddito possono avere bisogni non soddisfatti in termini di tecnologia assistiva. Un sondaggio nazionale negli Stati Uniti condotto tra persone
Capitolo 5 Il rafforzamento dei sistemi sanitari
con LM, sclerosi multipla e paralisi cerebrale, ha rivelato che più della metà (56,5%) degli intervistati dichiara di aver avuto bisogno della tecnologia assistiva nell’anno precedente, ma il 28,4% di essi diceva di non averla ricevuta tutte le volte che era necessaria (19). In uno studio sulla LM nei Paesi Bassi, la maggioranza di coloro che hanno risposto (56,7%) dice di aver incontrato problemi nell’ottenere le carrozzine e conseguentemente la loro dimissione dai centri riabilitativi era rimandata spesso a causa dei tempi di attesa. Inoltre, il 35,9% delle persone che utilizza le carrozzine manuali e il 47,5% di coloro che usa quelle motorizzate si lamenta delle proprie carrozzine. Lo stesso studio riferisce che mentre un’alta percentuale di chi ha risposto proporzione dei rispondenti (78,3%) concordava che la propria casa ha avuto le modifiche adeguate, una proporzione significativa (38,1%) diceva di non aver avuto tutte le modifiche richieste (20).
Il rinforzo dei sistemi sanitari Guida ed organizzazione La Convenzione delle Nazioni Unite sui diritti delle persone con disabilità (CRPD) dichiara che “le persone con disabilità hanno il diritto di godere del migliore stato di salute possibile, senza discriminazioni fondate sulla disabilità” e che gli Stati Membri devono adottare le misure appropriate per assicurare l’accesso ai servizi sanitari, compresa la riabilitazione, come descritta negli Articoli 25 e 26 della Convenzione (21). La Convenzione menziona esplicitamente la responsabilità degli Stati Membri di assicurare l’accesso alla tecnologia assistiva per le persone con disabilità. L’adempimento dei suddetti obblighi richiede leggi, politiche e strategie nazionali che in molti paesi a basso e medio reddito non sono state poste in atto per cui non viene garantita la fornitura e l’accesso ai servizi di assistenza sanitaria e riabilitativa, inclusa la tecnologia assistiva (2). Per esempio, un sondaggio globale sull’attuazione delle
Standard Rules on the Equalization of Opportunities for Persons with Disabilities [Regole standard sulla parificazione delle opportunità per persone con disabilità] delle Nazioni Unite ha rilevato che il 50% dei 114 paesi che hanno risposto non ha promulgato leggi riguardanti la riabilitazione; il 42% non ha politiche riabilitative in atto, il 48% non ha politiche riguardante specificamente la fornitura di apparecchi assistivi, e il 40% non ha istituito programmi di riabilitazione (22). Dove esistono leggi e politiche governative, spesso delle restrizioni sono imposte sul tipo e sulla gamma dell’assistenza fornita, il che può rendere difficile per le PLM l’accesso all’assistenza di cui hanno bisogno. Le definizioni contrastanti della disabilità, i criteri di idoneità per ricevere l’assistenza e le procedure complicate possono rendere difficile per le persone ottenere o lottare per le risorse di cui hanno bisogno (23). Senza le leggi, le politiche e le strategie appropriate, sarà difficile garantire che le PLM avranno l’accesso adeguato ai servizi di assistenza sanitaria e di riabilitazione. Occorre elaborare politiche specifiche sulla disabilità (che includono le PLM) e assicurare che i bisogni delle PLM relativi all’assistenza sanitaria e alla riabilitazione vengano affrontati in modo traversale negli altri settori governativi quali gli alloggi, i trasporti, l’istruzione, la ricreazione e il tempo libero, l’occupazione e l’assistenza sociale. Vanno previsti piani per i disastri umanitari come i terremoti che possono causare un gran numero di lesioni midollari traumatiche capaci di travolgere i sistemi già deboli (Vedi Riquadro 5.1). I paesi devono adottare un approccio incrementale al potenziamento dei sistemi sanitari per poter rispondere ai bisogni delle PLM. Un primo passo critico è quello di riconoscere i bisogni e i benefici dell’assistenza sanitaria e della riabilitazione per le PLM. Inoltre, il coinvolgimento di queste stesse persone nel processo di pianificazione è essenziale perché essendo direttamente interessate alle decisioni sulle politiche possono offrire informazioni preziose con i loro pareri, conoscenze ed esperienze. 101
Prospettive Internazionali sulla lesione del midollo spinale
Mentre i governi sono responsabili affinché le politiche e i piani strategici siano sostenuti ed attuati, una serie di enti – tra cui i centri specialistici per la LM, gli ospedali, le associazioni professionali, le università e le agenzie nazionali ed internazionali per lo sviluppo – possono svolgere un ruolo rilevante attraverso il partenariato e la collaborazione e fornire supporto finanziario e tecnico. I paesi con risorse limitate possono essere aiutati con la fornitura di assistenza tecnica, che può includere l’elaborazione di orientamenti importanti, l’organizzazione di gruppi di lavoro regionali e nazionali per aumentare la capacità e la formazione e l’assistenza nell’elaborazione di politiche e programmi nazionali.
Erogazione del servizio I sistemi di erogazione dei servizi sanitari e riabilitativi (compresa la tecnologia assistiva) variano nel mondo. Quanto all’assistenza pre-ospedaliera esistono vari modelli che vanno da sistemi avanzati di assistenza che utilizzano personale sanitario altamente qualificato, a sistemi basati sul volontariato comuni nelle aree con poche risorse. A prescindere dal sistema è essenziale che l’assistenza pre-ospedaliera sia integrata nel sistema sanitario esistente (28). I servizi medici in fase acuta e post-acuta per le PLM normalmente vengono erogati attraverso le strutture degenziali come i centri traumatologici, gli ospedali generali e le unità o centri specialistici per la LM, mentre i servizi riabilitativi possono essere forniti negli ambienti ospedalieri, ambulatori e comunitari. Nei paesi ad alto reddito i sistemi sanitari specializzati ed integrati per la LM sono generalmente l’opzione preferita – cioè, i servizi sono forniti “sotto un unico tetto” o un sistema organizzato che permette una facile transizione tra gli stadi di assistenza come si è detto nel Capitolo 4. Una dichiarazione politica emessa dalla European Spinal Cord Injury Federation (ESCIF) raccomanda la centralizzazione dell’assistenza, della riabilitazione e dell’assistenza a vita per le PLM 102
e lo sviluppo di centri appositi capaci di gestire tutti gli aspetti dell’assistenza alla persona (29). E’ stato riferito che il pronto intervento attraverso centri specializzati o equipe all’interno di ospedali generali produce esiti migliori per le PLM (2). E’ stato dimostrato che un ricovero più breve in un centro o unità specializzata o la sorveglianza di un’equipe dedicata riduce i costi, porta a meno complicanze e risulta in meno ricoveri dopo la dimissione rispetto ai servizi alternativi o non-specializzati (2, 30–42). Uno studio in nove paesi nel mondo, tra cui due paesi in via di sviluppo, ha trovato che le unità LM sono generalmente guidate da un medico formato nella medicina fisica e riabilitativa (43). I servizi necessari nella fase riabilitativa comprendono la fisioterapia, la terapia occupazionale, la consulenza, la fornitura della tecnologia assistiva, una visione d’insieme dei diritti e il supporto psicologico e psicosessuale. I pazienti hanno ricevuto tra due e cinque ore di terapia al giorno, normalmente cinque giorni la settimana, anche se si constata una variazione apprezzabile nel tempo dell’assistenza e nella durata della permanenza (43, 44). La fornitura della tecnologia assistiva riguarda il disegno, la produzione e la distribuzione dei prodotti e l’erogazione dei servizi attinenti quali la valutazione, l’adattamento e l’addestramento (45). Secondo il modello di erogazione del servizio, le PLM possono ottenere la tecnologia assistiva tramite una serie di enti, tra cui i servizi governativi, le agenzie internazionali, le ONG, il settore privato o una combinazione di essi (partenariato pubblico-privato). Laddove le risorse governative sono limitate, altri enti possono svolgere un ruolo maggiore nella fornitura della tecnologia assistiva. Gli studi nazionali sulle condizioni di vita delle persone con disabilità in cinque paesi africani indicano che la maggior parte degli apparecchi assistivi erano forniti da fonti al di fuori del governo, anche se alcuni paesi in questo gruppo, per esempio la Namibia, avevano una proporzione molto più alta di tecnologia assistiva fornita dal governo rispetto agli altri paesi (Vedi Tabella 5.1).
Capitolo 5 Il rafforzamento dei sistemi sanitari
Riquadro 5.1. L’organizzazione dei servizi riabilitativi dopo il terremoto della Sichuan, Cina Nel maggio del 2008 un terremoto devastante che colpì la Provincia Sichuan della Cina ha causato circa 86.000 morti e dispersi e lasciato tanti altri feriti e sfollati. Ci sono stati circa 200 ricoveri in ospedale con lesioni al midollo spinale che richiedevano cure mediche intensive. Dopo il terremoto la Chinese Association of Rehabilitation Medicine (CARM) [Associazione Cinese di Medicina Riabilitativa] si è associata con gli ufficiali sanitari del governo locale e con la Fondazione Caring for Children (un’ONG nazionale) allo scopo di organizzare un approccio “NHV” per rispondere ai bisogni riabilitativi delle PLM e di altre persone con traumi disabilitanti. Questo approccio “NHV” ha unito i fondi dell’ONG (N), le risorse dai dipartimenti sanitari locali (H) e l’impegno di volontari professionisti della riabilitazione (V). La Legge della Repubblica Popolare della Cina sulla Protezione delle persone con disabilità del 2008 (24) e la CRPD (21) forniscono il contesto legislativo per il modello NHV. Dopo il terremoto a causa del grave danneggiamento delle infrastrutture sanitarie nel capoluogo di provincia Chengdu e nelle zone attigue ed il numero enorme di persone con LM da trauma e con altre lesioni disabilitanti, ha avuto luogo un’evacuazione di massa dei pazienti medicalmente stabili verso ospedali in altre parti della Cina (25). Alcuni mesi dopo, le infrastrutture sono state ripristinate sufficientemente per permettere alla maggior parte delle persone di ritornare direttamente a casa e ai campi profughi o essere trasferita agli ospedali nell’area Chengdu per continuare le cure mediche. In previsione dei bisogni riabilitativi delle persone che tornavano alla comunità, la CARM in partenariato con i funzionari sanitari del governo locale e con la Fondazione Caring for Children hanno messo a punto un progetto per fornire la chirurgia per le fratture di secondo grado e per la riabilitazione delle persone con fratture, LM, amputazioni, lesioni cerebrali traumatiche e lesioni al sistema nervoso periferico. Una valutazione dei bisogni riabilitativi della zona è stata effettuata con l’aiuto della Handicap International e la Fondazione Caring for Children per individuare le persone che potrebbero trarre beneficio da IBR. Dopo una prima sperimentazione, IBR è stata messa in pratica nel dipartimento sanitario nella Contea di Mianzhi. Dopo la dimissione alla comunità l’enfasi si è spostata a CBR e, in particolare, al suo componente sanitario – promozione, prevenzione, cure mediche, riabilitazione ed apparecchi assistivi. Anche altri componenti di CBR sono stati affrontati tra cui il sostentamento, i componenti sociali e di valorizzazione attraverso la fornitura di servizi per l’occupazione, assistenti personali e il sostegno da gruppi di pari. Le persone che hanno subito lesioni a causa del terremoto hanno ricevuto IBR “gratis” insieme al rimborso spese di base per vivere, come ad esempio le spese di trasporto all’ospedale. Complessivamente, la convenienza economica del modello NHV è stata agevolata dalla fornitura di IBR negli ospedali vicini alla contea invece di quelli provinciali più distanti. L’efficacia del modello NHV per la riabilitazione di LM è stata indicata da Li (26) il quale ha dimostrato il miglioramento medio di 30 punti dell’Indice Barthel, una misura delle attività della vita quotidiana, in 51 vittime del terremoto con LM che sono state curate con le modalità NHV. Nella maggior parte dei pazienti le complicanze mediche sono state gestite con efficacia. Inoltre, Hu (27) ha mostrato un miglioramento riportato da 26 delle PLM dimesse alla comunità con il modello NHV per quanto riguarda la qualità di vita, la salute in genere, la soddisfazione nelle relazioni sociali, nonché l’indipendenza fisica e la mobilità.
Le PLM, insieme ai propri familiari, hanno bisogno di essere messe nelle condizioni di poter gestire da soli la la vescica, l’intestino e le tecniche di spostamento, l’uso della carrozzina e la cura di sé. La riabilitazione professionale, gli sport e le attività culturali possono venire in seguito.
Barriere
Le PLM spesso incontrano barriere al mantenimento di uno stile di vita sano e all’accesso ai servizi sanitari. Alcune di queste barriere sono descritte in seguito.
Disponibilità
In vista dei molteplici bisogni sanitari delle PLM, occorre una gamma completa di servizi. Mentre 103
Prospettive Internazionali sulla lesione del midollo spinale
l’erogazione dei servizi attraverso centri specializzati è preferibile per le PLM ciò richiede un investimento sostanzioso di risorse, e questi servizi sanitari e riabilitativi sono spesso centralizzati con una disponibilità limitata nelle aree rurali e remote (2). Uno studio sui fattori che incidono sull’uso dell’assistenza sanitaria da personale militare in congedo con LM negli Stati Uniti ha trovato che la distanza dalle strutture generali sanitarie aveva un impatto sull’uso: cioè, coloro che vivono lontano dai servizi ospedalieri e ambulatoriali li usano meno (46). Uno studio realizzato nelle aree rurali e remote dell’Australia ha trovato che l’accesso ai servizi specializzati come la gestione del dolore e l’accomodamento della carrozzina tipicamente era difficile come pure gli esami diagnostici e le attrezzature specializzate (47). A causa della bassa incidenza di LM è molto difficile creare servizi sanitari specializzati e sostenibili nelle aree rurali e remote (47).
I sistemi d’erogazione dei servizi sanitari e riabilitativi (compresa la tecnologia assistiva) possono creare difficoltà per le persone con disabilità e per i loro familiari: i percorsi complicati e la frammentazione dei servizi sono le maggiori barriere alla soddisfazione dei bisogni (5). Esiste raramente un “unico posto” che agevola l’accesso alla tecnologia assistiva e spesso ci sono interessi in concorrenza tra progettisti, produttori, fornitori, installatori (montatori) e finanziatori. In alcuni paesi i servizi di tecnologia assistiva possono essere separati dai servizi sanitari rendendo difficile il coordinamento. In uno studio i consumatori hanno indicato che i ritardi nell’erogazione dei servizi, il gran numero di organizzazioni e di persone autoritarie coinvolte e il maltrattamento da parte dei professionisti sono fattori che contribuiscono ai bisogni non soddisfatti per la tecnologia assistiva (20).
Accessibilità
Accettabilità
Le persone con disabilità spesso riportano difficoltà nell’accesso alle strutture sanitarie. La mancanza di attrezzature accessibili ed appropriate può indurre i medici ed altri professionisti sanitari a rinunciare, omettere o non considerare le procedure appropriate (che normalmente sono di routine) per le persone con disabilità. (2) Un sondaggio condotto tra medici negli Stati Uniti ha dimostrato che anche se essi erano consapevoli di alcune barriere fisiche nei propri uffici continuavano a utilizzare le attrezzature inaccessibili (48).
In molti casi le PLM riferiscono che i programmi riabilitativi non rispondono ai loro bisogni – cioè, sono standardizzati e non adattati alle necessità individuali (17). Per esempio, spesso si “prescrive” la tecnologia assistiva senza prendere in considerazione né le necessità individuale degli utenti né il loro ambiente di vita. Atteggiamenti come “qualcosa è meglio di niente” e “taglia unica” per tutti, sono comuni dove le risorse sono limitate (49–51). La valutazione inadeguata dei bisogni dell’utente può portare all’assegnazione di ausili inadatti (52) con esiti negativi. Per esempio, quando
Tabella 5.1. Erogazione della tecnologia assistiva secondo l’attore Paese Malawi Mozambique Namibie Zambie Zimbabwe Fonte (11-15 ). Governo 19% 47% 60% 14% 28% ONU 9% 4% 3% 9% 8% Privato 34% 36% 30% 44% 31% Altre fonti 38% 13% 7% 33% 33%
104
Capitolo 5 Il rafforzamento dei sistemi sanitari
i sistemi della carrozzina non sono adattati ai bisogni individuali, le PLM rischiano patologie secondarie come ulcere da pressione, strappi ripetuti e lesioni alle spalle (53, 54). Le PLM spesso hanno un accesso limitato all’informazione e al supporto necessario per prendere decisioni consapevoli circa l’assistenza sanitaria e la riabilitazione. Le persone possono essere particolarmente vulnerabili durante i primi stadi della lesione perché la mancanza di esperienza e di conoscenze può limitare la comprensione dei propri bisogni (55). Il poco coinvolgimento degli utenti può spiegare perché un gran numero di carrozzine fornite nei paesi a basso e medio reddito non sono adatte per gli utenti nel loro ambiente (56–57) o perché vengono abbandonate (55).
L’uso di modelli alternativi e complementari per l’erogazione dei servizi
Affrontando le barriere Coordinamento dei servizi Dato che molteplici enti sono coinvolti nell’erogazione dei servizi per le PLM, un approccio sistematico e unificato all’erogazione dei servizi è cruciale. A prescindere dal tipo di modello esistente di erogazione dei servizi, questi devono essere coordinati per garantire la facile transizione tra i diversi stadi ed ambienti dell’assistenza (39, 58). Il coordinamento dell’assistenza promuove un approccio di equipe collaborativo e interdisciplinare all’erogazione dei servizi, mettendo le PLM in contatto con i servizi e le risorse appropriate garantendo una distribuzione più efficiente ed equa delle risorse (2). Si tratta di individuare un coordinatore dell’assistenza, sviluppare un piano individuale di assistenza, e fornire la referenza appropriata e la trasmissione effettiva di informazione ad altri servizi (2). Uno studio che include la Svezia e la Grecia ha paragonato gruppi simili di PLM e ha concluso che i migliori esiti si raggiungono con meno complicanze quando esiste un percorso predefinito per la gestione della persona durante il primo anno dopo la lesione midollare traumatica (59).
Quando non sono possibili servizi specializzati dedicati per le PLM, per rispondere ai loro bisogni si possono considerare altri modelli di erogazione dei servizi. Alcuni modelli alternativi sono tracciati di seguito. È da sottolineare che questi non sono modelli autonomi ma dovrebbero far parte di un sistema coordinato di cure. Piccoli reparti dedicati o equipe Si possono istituire reparti o equipe spinali all’interno degli ospedali generali. Per esempio, una specifica equipe per la LM in Brasile ed un piccolo reparto in Afghanistan sono stati creati in ospedali chirurgici e centri ortopedici e vengono aiutati da un programma di controllo a domicilio (2, 60). Nel Vietnam il Centro nazionale riabilitativo si è associato con Handicap International per un progetto di decentralizzazione dei servizi per la LM attraverso la creazione di reparti specialistici in centri riabilitativi esistenti. Supporto specialistico per i servizi sanitari tradizionali Le equipe mobili di consultazione sono state proposte come un modo di supportare le PLM che si trovano in ospedali per la terapia intensiva che non hanno unità specialistiche per la LM (38). Queste equipe possono aiutare nella prevenzione e nella gestione delle complicanze associate con la LM, dare consigli per mandare il paziente tempestivamente ai servizi riabilitativi, aiutare con il piano di dimissione e fornire istruzioni al personale ospedaliero. I centri per la LM potrebbero svolgere un ruolo di consulenza e di istruzione volto a rafforzare la capacità dell’assistenza primaria e i servizi per le questioni di controllo attinenti alle PLM che vivono nella comunità (5). Modelli di sensibilizzazione ed estensione Questi modelli permettono alle PLM di mantenere contatto con il personale sanitario specialistico dopo la dimissione dai centri di terzo livello. Con questi modelli i servizi sono erogati vicino a dove vivono le PLM, superando così barriere come la distanza e i costi del trasporto. 105
Prospettive Internazionali sulla lesione del midollo spinale
Le cliniche ambulatoriali e le visite a domicilio insieme alle “cliniche volanti” (Vedi Riquadro 5.2) sono esempi di modelli che possono dare accesso ai servizi medici e riabilitativi specialistici per le PLM che vivono in comunità rurali e remote, e sono riconosciuti e appoggiati dalle PLM come forme alternative per l’erogazione dei servizi (5). Telemedicina/teleriabilitazione La tecnologia informatica e delle comunicazioni è stata utilizzata per erogare in modo continuativo i servizi di supporto per le PLM (61, 62). Sono state utilizzate la tele-consultazione e la consulenza via internet per l’assistenza medica e la riabilitazione
per curare le specifiche complicanze della lesione midollare come la cura delle ferite, suggerendo che potrebbe essere un modello appropriato per l’erogazione dei servizi anche per altre aree come la gestione della vescica (63). Inoltre, l’uso delle telecomunicazioni è una soluzione potenziale per l’erogazione dei servizi di tecnologia assistiva nelle zone rurali e remote (64). La riabilitazione con base comunitaria (CBR) La CBR è una strategia di sviluppo ad ampio raggio che attualmente viene messa in atto in più di 90 paesi del mondo. Ha il potenziale di aumentare l’accesso all’assistenza sanitaria, alla riabilitazione
Riquadro 5.2. Cliniche volanti verso le comunità aborigene di East Arnhem in Australia Fornire l’accesso continuo ai servizi sanitari e riabilitativi per le PLM nelle zone rurali e remote dell’Australia presenta una sfida importante. Nel territorio settentrionale dell’Australia molti indigeni che subiscono la LM non possono tornare alle proprie comunità a causa dell’inadeguatezza dei servizi sanitari e di sostegno. Le principali LM e le gravi lesioni non-traumatiche vengono curate in una delle principali unità spinali nel sud del paese – normalmente dal South Australian Spinal Cord Injury Service (SASCIS) ad Adelaide. Le cure mediche e la riabilitazione per le persone con forme di LM meno gravi sono fornite dal Royal Darwin Hospital Rehabilitation Service (RDHRS) a Darwin nel territorio settentrionale. Ogni anno il SASCIS offre cliniche volanti a Darwin e ad Alice Springs dove si effettuano controlli continuativi per le PLM che vivono nel territorio settentrionale. Per gli indigeni che vivono nelle aree come East Arnhem Land spesso è difficile recarsi a tali cliniche perché vivono in comunità che si trovano su isole o in luoghi remoti dai quali è necessario fare lunghi viaggi attraverso la macchia per raggiungere le città principali. Programmi mirati sono necessari per rispondere ai bisogni delle PLM che vivono nelle comunità isolate dell’Australia settentrionale. Nel 1994 l’Ufficio territoriale per l’assicurazione contro gli infortuni stradali ha fornito i fondi per un medico riabilitativo esperto di LM da Adelaide e per un infermiere spinale dal territorio settentrionale a visitare due comunità nel East Arnhem Land (Yirrkala e Gapuwiyak). Col tempo il numero delle comunità e delle persone visitate è aumentato fino a 12 clienti e sette comunità ogni visita. Dal 2002 un professionista di discipline sanitarie affini (un terapista occupazionale, un fisioterapista e/o un ufficiale aborigeno di collegamento per la riabilitazione) accompagna il medico e l’infermiere, mentre i fondi sono stati forniti dal RDHRS e dal servizio sanitario territoriale. Dove è possibile, l’equipe spinale per la sensibilizzazione si consulta con i membri dell’equipe per le discipline sanitarie affini rurali e remote, che possono essere in contatto con i clienti individuali e con il personale sanitario comunitario come medici, infermieri ed operatori sanitari indigeni. Quando la clinica volante LM non effettua una visita comunitaria è comunque accessibile per telefono, telefax e e-mail. I costi includono i voli commerciali tra Darwin e Gove, l’alloggio per una notte in un motel o una foresteria comunitaria e i voli con la linea aerea charter locale. Questi costi sembrano favorevoli rispetto all’alternativa di portare ogni PLM con il proprio badante a Darwin per un minimo di due notti. Oltre ai benefici economici per il sistema sanitario ci sono altri benefici per le PLM, i loro familiari e gli operatori sanitari tra cui lo sviluppo di un rapporto fiducioso tra le PLM, i familiari e l’equipe specialista LM, come pure la possibilità di offrire opportuna (e programmata) istruzione alle PLM, ai familiari, agli operatori sanitari aborigeni e al personale infermieristico e medico remoto. Inoltre, l’equipe della clinica volante accresce le proprie conoscenze circa le difficoltà e i bisogni delle PLM che vivono in comunità remote e circa le soluzioni locali ai problemi, il che può anche beneficiare altre comunità.
106
Capitolo 5 Il rafforzamento dei sistemi sanitari
e alla tecnologia assistiva per le persone con disabilità che vivono in comunità con poche risorse (65). La ricerca che viene dall’Uganda dimostra che mentre la mortalità dei bambini al di sotto dei cinque anni con spina bifida è spesso vicino al 50%, i distretti con programmi CBR hanno un tasso di mortalità del 16%, che si avvicina a quello dei bambini non disabili. I tassi di sopravvivenza sono associati con il comportamento parentale, che può essere supportato ed incoraggiato dalle visite degli agenti CBR (66). Lo sviluppo dei partenariati tra i servizi specialistici esistenti e i programmi CBR offrono un’opportunità per le cure continuate e coordinate delle PLM. Con la formazione adatta e la supervisione gli agenti CBR hanno dimostrato in molti ambienti di essere capaci di dare un supporto continuativo alle PLM. Inoltre, molti programmi CBR hanno aiutato le PLM attraverso iniziative di supporto tra pari come per esempio i gruppi di auto-aiuto (67).
Adottare approcci indirizzati alla persona
Un approccio collaborativo è necessario quando le PLM (e i loro familiari, se appropriato e pertinente) possono contribuire alla pianificazione e al processo decisionale (55, 68). Una meta-sintesi della ricerca qualitativa che studia le esperienze riabilitative in seguito alla lesione midollare rileva che le persone si sentono apprezzate e rispettate quando il personale sanitario: (i) le tratta come partner durante tutto il processo riabilitativo; (ii) ha uno stile di comunicazione diretto e aperto; (iii) condivide le informazioni; e (iv) le coinvolge nel processo di soluzione dei problemi e quello decisionale (17). Gli approcci di autogestione sono fondamentali per assicurare che le PLM siano in grado di mantenere la propria salute nel lungo termine (54). I limiti all’interno dei sistemi sanitari sottolineano ulteriormente l’importanza di tali approcci. Le PLM hanno rilevato che la cura dell’intestino, della vescica e della pelle sono alcuni dei temi più importanti per i quali hanno bisogno di istruzione per facilitare l’autogestione (54). Oltre alla formazione e all’istruzione fornite dal personale
sanitario e riabilitativo, ci sono vari modi in cui le PLM possono ottenere conoscenze e competenze. L’internet può essere una buona fonte di informazione e un mezzo utile per le PLM per conoscere la loro condizione e per poter svolgere un ruolo attivo nella propria assistenza medica e riabilitativa. Per esempio, il “Spinal Trust” della Nuova Zelanda ha preparato “Spinal Essentials” [Concetti fondamentali sul Midollo Spinale], un corso interattivo online, disegnato per istruire le PLM circa l’anatomia spinale, i termini medici associati con la LM e le problematiche che devono affrontare (69). La ricerca ha dimostrato che le PLM danno valore ai contributi dei loro pari sia in base informale, come un incontro con altri pazienti durante il ricovero in ospedale, sia in modo più formale attraverso la guida, il supporto e i programmi di formazione effettuati dai loro simili (17,70). I programmi realizzati tra pari hanno il potenziale di migliorare gli esiti per le PLM e per i loro familiari. Per esempio, uno studio comparato di un programma di guida effettuato da pari negli Stati Uniti ha indicato una tendenza al ribasso delle complicanze mediche dopo aver completato il programma guidato da pari (71). I mentori che sono pari hanno una caratteristica in comune (i.e. la LM) e offrono il supporto necessario e l’assistenza condividendo le loro esperienze, conoscenze e competenze. I mentori pari possono risultare utili ad aumentare la fiducia nelle persone che hanno sofferto di lesione midollare recentemente, per affrontare le problematiche relative all’adattamento psicosociale; per fornire formazione ed istruzione circa la cura di sé e la mobilità; per dare informazioni e consigli circa le strategie per mantenere la salute e per prevenire le condizioni secondarie come le ulcere da pressione e le infezioni del tratto urinario; e per farsi riferire al personale sanitario quando necessario. La formazione basata su pari può essere incorporata nei diversi stadi della cura sanitaria e riabilitativa ed utilizzata in molti contesti diversi. Le ONG, le organizzazioni di persone con 107
Prospettive Internazionali sulla lesione del midollo spinale
disabilità e i programmi CBR hanno utilizzato questo tipo di formazione con successo nei paesi a basso reddito. Organizzazioni come “Motivation” gestiscono la formazione basata su pari per utenti di carrozzine nei paesi come Malawi, Mozambico, Romania e Sri Lanka. I gruppi per adulti e per bambini promuovono le competenze relative all’uso della carrozzina, la salute e la conoscenza dei diritti dei disabili (72).
Miglioramento dell’accesso fisico alle strutture sanitarie
La CRPD (21) definisce “l’adattamento ragionevole” come “le modifiche e gli adattamenti necessari ed appropriati che non impongano un onere sproporzionato o eccessivo adottati, ove ve ne sia necessità in casi particolari, per garantire alle persone con disabilità il godimento e l’esercizio, su base di uguaglianza con gli altri, di tutti i diritti umani e delle libertà fondamentali”. Gli adattamenti ragionevoli come le porte automatiche larghe, le sale ampie per le visite, i lettini regolabili in altezza per le visite , le bilance accessibili per le carrozzine e i banchi bassi per fare il check-in potrebbero migliorare per le PLM l’accesso fisico alle strutture sanitarie.
Risorse umane Le PLM hanno bisogno di avere accesso ad una larga gamma di personale competente in grado di fornire sia l’assistenza sanitaria generale sia quella specialistica e i servizi riabilitativi. Tale personale comprende medici (ad es. medici di emergenza, medici generici, neurologi, fisiatri, chirurgi, urologi), infermieri, personale non medico, ortesisti e protesisti, psicologi, ingegneri della riabilitazione, terapisti (terapisti occupazionali, fisioterapisti, logopedisti), assistenti sociali e una varietà di personale di supporto, che comprende il personale sanitario e riabilitativo basato nella comunità.
Barriere
I dati sono insufficienti per commentare in modo adeguato le sfide globali relative alle risorse umane 108
nell’area dell’assistenza sanitaria e della LM. Tuttavia, le carenze globali di risorse umane per la salute e per la riabilitazione, particolarmente nei paesi a basso e medio reddito e negli ambienti rurali e remoti (2, 65, 73, 74), suggeriscono che il numero di personale formato per la LM è insufficiente per garantire che le PLM abbiano accesso alle cure di cui hanno bisogno. Esistono pochi programmi formali di formazione per i professionisti riabilitativi negli ambienti a basso e medio reddito. Un sondaggio condotto in 114 paesi ha dimostrato che 37 di essi non hanno intrapreso azioni per formare il personale riabilitativo (22). Dove esistono corsi per professionisti riabilitativi, i programmi di studio non coprono la LM in modo adeguato. Le prove empiriche suggeriscono che mentre molti programmi includono la LM nei programmi di studio, in genere le informazioni sono impartite in una serie di conferenze con poco tempo dedicato agli aspetti pratici delle cure relative. La scarsa competenza dei fornitori di servizi si presenta come una barriera significativa per le persone con disabilità nell’ottenere la tecnologia assistiva appropriata (75). I professionisti della riabilitazione hanno indicato in uno studio condotto nello stato di Maine (Stati Uniti) di non aver ricevuto nessuna o poche conoscenze nelle aree relative alla fornitura della tecnologia assistiva (76). I terapisti occupazionali pediatrici hanno riferito di aver ricevuto una formazione e un supporto tecnico inadeguato e di sentirsi insicuri nelle aree relative alla fornitura della tecnologia assistiva (75). La bassa incidenza della LM significa inoltre che il personale sanitario che viene in contatto con le PLM è spesso poco preparato per affrontare i loro bisogni continuativi di assistenza. Uno studio condotto in Australia ha dimostrato che la maggior parte dei partecipanti ha la percezione che la scarsa conoscenza specialistica locale della LM rappresenta una barriera significativa alla soddisfazione dei bisogni (5). Alcuni studi hanno dimostrato che la carenza di conoscenze circa la LM tra i medici della assistenza primaria, i
Capitolo 5 Il rafforzamento dei sistemi sanitari
quali, per molte PLM, rappresentano gli operatori sanitari preferiti per l’assistenza, costituisce una barriera alla fornitura dell’assistenza sanitaria preventiva e continuativa per la LM (48,77–80).
Sostenere lo sviluppo professionale continuo
Confrontando le barriere
Gli articoli 4 e 26 della CRPD mettono in risalto gli obblighi degli Stati Membri nel promuovere la formazione dei professionisti e dell’altro personale che lavora con le persone con disabilità (21). Per rispondere ai bisogni delle PLM, i paesi devono prendere in considerazione una serie di strategie per aumentare le competenze del personale sanitario e riabilitativo. Tali strategie comprendono: l’istruzione e la formazione, lo sviluppo della competenza specialistica di LM all’interno del paese, l’uso di metodi alternativi per fornire la competenza sulla LM dove non è disponibile localmente, lo sviluppo della collaborazione tra il personale sanitario, il miglioramento della qualità e dell’efficienza dell’erogazione dei servizi e l’introduzione di incentivi per trattenere il personale sanitario nelle zone remote.
Istituire e rafforzare programmi di formazione per professionisti della riabilitazione
Esiste in tutto il mondo la necessità di istituire programmi di formazione per affrontare la carenza significativa di personale riabilitativo. Bisogna istituire programmi di formazione a tutti i livelli, che comprendono l’istruzione superiore (universitaria e post-laurea), l’istruzione di medio livello (certificazioni) e l’istruzione introduttiva (puntando sulle discipline come la sanità comunitaria e CBR). I programmi di formazione per il personale riabilitativo dovrebbero essere rivisti in collaborazione con le associazioni professionali, i fornitori della formazione e le associazioni per la LM, per determinare il miglior modo di integrare le informazioni sulla LM, la salute e la riabilitazione, comprendendo la tecnologia assistiva.
Lo sviluppo professionale continuo (che include la supervisione) è necessario per mantenere o migliorare le conoscenze e le competenze del personale sanitario e riabilitativo esistente e ciò può essere collegato all’iscrizione e alla licenza di esercitare la professione. In Australia, un modello di servizio in cui si dava istruzione e supporto professionale ai professionisti sanitari rurali, ha aumentato la loro sicurezza nella gestione delle PLM (47). Si possono utilizzare vari modi di erogazione, tra cui il faccia a faccia, nel posto di lavoro o la formazione via internet come pure la telemedicina/teleriabilitazione. Il modo particolare usato dipenderà dal contesto e dal modello di erogazione dei servizi (73). Mentre alcuni bisogni sanitari sono esclusivi alle PLM (ad es. disreflessia autonomica), molti altri (ad es. la gestione dell’intestino, della vescica e della cute) sono rilevanti anche per altre condizioni sanitarie. Da prendere in considerazione sono l’integrazione e l’espansione della formazione a problematiche rilevanti per una larga gamma di condizioni sanitarie come pure le strategie per promuovere la collaborazione tra il personale sanitario e riabilitativo (73, 81). Pacchetti per l’apprendimento via internet, come quello lanciato dalla International Spinal Cord Society (ISCoS) nel 2012, possono fornire le informazioni essenziali e il supporto per il personale sanitario e riabilitativo che lavora nel campo della LM (82). Anche le reti professionali internazionali, regionali e nazionali, come la International Network of Spinal Cord Injury Physiotherapists (SCIPT) [Rete Internazionale di Fisioterapisti per LM], possono facilitare lo scambio di idee, conoscenze e risorse (83). Gli “Osservatori”, un’iniziativa del Comitato per l’istruzione della International Spinal Cord Society, sono stati concepiti per dare l’opportunità ai professionisti sanitari idonei di osservare le pratiche di gestione nei centri LM per un periodo che va da tre settimane a tre mesi (84).
109
Prospettive Internazionali sulla lesione del midollo spinale
Utilizzare professionisti non sanitari per erogare i servizi
Mentre i periodi di riabilitazione in ospedale diventano più brevi, anche i professionisti riabilitativi affrontano la sfida di dover fornire i servizi in periodi di tempo sempre più brevi (78). Come è stato rilevato nella sezione sull’erogazione dei servizi, il supporto, la guida, i consigli e la formazione di pari possono essere utili per offrire orientamenti ed assistenza alle PLM, nonché per aiutare a sormontare le debolezze del sistema sanitario. Molte organizzazioni, come le ONG basate nella comunità e le organizzazioni di persone con disabilità, hanno istituto programmi di supporto basati su pari. I servizi specializzati per la LM hanno anche incluso programmi basati su pari e li hanno integrati nei servizi di cure mediche e riabilitative. E’ essenziale assicurare la formazione e la supervisione per il successo dei programmi gestiti da professionisti non-sanitari (71).
diagnosi, cura e riabilitazione (87). In genere, si possono classificare le tecnologie sanitarie nelle seguenti aree: la cura d’emergenza e di chirurgia essenziale; la diagnostica e la tecnologia di laboratorio; la diagnostica per immagini; i dispositivi medici (che include la tecnologia assistiva). Anche se la tecnologia assistiva e le carrozzina sono state trattate altrove, sono al centro dell’attenzione in questa sezione.
Barriere
Assicurare che i familiari ricevano la formazione e il supporto adeguato
I familiari possono essere una risorsa preziosa, tra l’altro, per aiutare le PLM ad accedere all’assistenza, per sostenere l’attuazione dei programmi riabilitativi e per aiutare con le attività della vita quotidiana. In Nigeria è stato messo a punto un programma intensivo di dodici settimane per la gestione della LM. L’ospedale ortopedico aveva un numero limitato di letti e non poteva accogliere le persone per le lunghe degenze. I familiari sono stati formati in blocchi temporali per complementare e sormontare la carenza di personale con esperienza (85). Anche le ONG possono dare formazione e supporto a chi si prende cura delle PLM nei paesi in via di sviluppo, concentrandosi sul mantenimento dell’assistenza sanitaria, la gestione manuale e le difficili problematiche emotive (86).
Le tecnologie sanitarie Le tecnologie sanitarie sono necessarie in tutte le fasi dell’assistenza sanitaria per le PLM e sono essenziali per la sicura ed efficace prevenzione, 110
Molti paesi non sono in grado di rispondere ai bisogni di tecnologia assistiva delle PLM a causa delle barriere associate con la produzione, la distribuzione e il mantenimento. In molti paesi a basso e medio reddito la produzione e la distribuzione della tecnologia assistiva è in scala ridotta o, in alcuni casi, è inesistente (50,88). Molti paesi hanno un accesso limitato ai materiali e alle attrezzature necessari a produrre gli apparecchi assistivi. La richiesta per le tecnologie assistive nei paesi in via di sviluppo può essere limitata a causa del diminuito potere d’acquisto degli utenti potenziali e della consapevolezza limitata tra gli utenti circa l’esistenza e i benefici di tali apparecchi. Molti paesi con risorse limitate dipendono dalle donazioni delle organizzazioni internazionali e delle ONG. Questo modello viene usato comunemente per fornire e distribuire le carrozzine nuove o rimesse a nuovo nei paesi a basso reddito. Mentre questo approccio è benintenzionato e permette la distribuzione di un gran numero di carrozzine in un modo economicamente vantaggioso ha alcuni limiti, come descritti sotto, e non è sostenibile per il lungo andare perché non sviluppa la capacità locale (89). La tecnologia assistiva non è applicabile in tutti i contesti: per esempio, i disegni delle carrozzine che sono appropriati per le PLM nei paesi ad alto reddito possono non essere utili per quelle nei paesi a basso reddito (18). Inoltre, anche il livello di erogazione dei servizi che accompagna la donazione della tecnologia assistiva può variare tra le diverse organizzazioni (88). Gli apparecchi sono spesso prescritti senza fornire la formazione
Capitolo 5 Il rafforzamento dei sistemi sanitari
adeguata e il supporto per gli utenti (56, 90) e ciò può creare una serie di conseguenze. L’abbandono o la non-utilizzazione della tecnologia assistiva può essere un indicatore di bisogni non soddisfatti. E’ stato dimostrato che i tassi di abbandono della tecnologia assistiva sono più alti durante il primo anno di uso e successivamente dopo cinque anni d’uso (91). La tecnologia assistiva può essere abbandonata come conseguenza dei bisogni cambiati degli utenti, della scarsa prestazione dell’ausilio (in termini di efficacia, affidabilità, durabilità, comfort, sicurezza o facilità di utilizzazione) e dalla mancanza di coinvolgimento degli utenti nel processo di selezione (91). E’ probabile che il tipo di apparecchio e il livello di LM incidono sull’abbandono della tecnologia (92).
locali (72, 95). Le normative possono migliorare la qualità della tecnologia assistiva, aumentare l’affidabilità dei prodotti e ridurre i rischi potenziali per gli utenti (96). La International Standards Organization (ISO) [Organizzazione per gli Standard Internazionali] ha norme per le carrozzine manuali e motorizzate e per gli scooter e norme che riguardano il trasporto di persone in carrozzine, autobus o pulmini (96). Tuttavia, tali norme non sono necessariamente applicabili in tutti i contesti ed è importante sviluppare norme nazionali che prendono in considerazione i fattori come l’ambiente locale e le caratteristiche dell’utente (18, 97).
Selezione dei modelli appropriati per la produzione e la distribuzione
Affrontando le barriere
Le strategie sostenibili a basso costo sono necessarie per poter fornire la tecnologia assistiva appropriata nei paesi in via di sviluppo. L’idoneità di ogni approccio dipenderà dal contesto in ogni paese e può variare per i diversi tipi di tecnologie assistive. I fattori da considerare includono i contributi di input (i requisiti finanziari e tecnici), la sostenibilità (il potenziale per la produzione stabilita senza contributi esterni o con contributi esterni stabili a lungo termine), l’adeguatezza (fino a che punto la tecnologia risponde bene ai bisogni dell’utente) e l’efficacia (la quantità che può essere prodotta e consegnata in un dato periodo di tempo) (88).
Il disegno della tecnologia appropriata
La tecnologia appropriata esige che le caratteristiche progettuali siano personalizzate secondo l’ambiente, i bisogni e le preferenze dell’utente (93). Le problematiche locali devono essere considerate, come il terreno irregolare, l’accesso limitato all’elettricità e la disponibilità dei componenti dell’apparecchio quando si rompono (18, 88, 94). Diverse organizzazioni hanno sviluppato apparecchi per la mobilità per i paesi in via di sviluppo che superano molte delle problematiche
Diversi modelli per la produzione possono essere utilizzati nei paesi a basso reddito per aumentare la disponibilità della tecnologia assistiva. Per esempio, i modelli creati in piccole fabbriche artigianali richiedono la creazione delle strutture per la fabbricazione locale che possono aumentare la sostenibilità, creare occupazione per la gente locale (comprese le persone con disabilità) e offrire prodotti più convenienti economicamente e appropriati per l’ambiente locale (89, 98). Tuttavia, tali modelli hanno avuto livelli di successo variabili nei paesi a basso reddito perché richiedono del tempo significativo ed investimenti finanziari per installarli e sostenerli. Inoltre, spesso sono limitati nella loro capacità di rispondere ai bisogni totali della popolazione (88). Alcuni paesi come l’India e la Cina hanno la capacità di intraprendere la produzione su larga scala e fornire i prodotti a livello nazionale, regionale e locale.
Erogazione completa dei servizi
I servizi appropriati sono necessari per aiutare le persone a scegliere, ottenere e imparare a utilizzare le tecnologie assistive. Tali servizi comprendono: la valutazione e la prescrizione; la selezione e l’adattamento; il controllo in seguito per assicurare l’uso sicuro ed efficiente; la manutenzione continua, la riparazione e la sostituzione. In assenza di 111
Prospettive Internazionali sulla lesione del midollo spinale
servizi completi i bisogni degli utenti, che cambiano col tempo, non possono essere soddisfatti, gli esiti saranno compromessi e gli apparecchi assistivi possono essere abbandonati (89). Uno studio in Guatemala di valutazione delle osservazioni degli assistenti che ricevono carrozzine in donazione per i loro figli con disabilità (94) ha dimostrato che anche se veniva percepito il beneficio delle carrozzine è stato sottolineato il bisogno di fornire le carrozzine in collaborazione con i servizi locali per supportare l’utilizzo delle carrozzine (Vedi anche Riquadro 5.3). Alcune pubblicazioni come Guidelines on the provision of manual wheelchairs in less-resources settings [Linea guida circa la fornitura di carrozzine manuali in ambienti con meno risorse] offrono informazioni utili e raccomandazioni sull’erogazione dei servizi (18). Si può imparare molto dai paesi che hanno sistemi di erogazioni globali (45). Per esempio, negli Stati Uniti l’Assistive Technology Act [Legge sulla tecnologia assistiva] del 1998 finanzia programmi in ogni stato per fornire una serie di servizi tra cui centri dimostrativi, programmi di prestito, assistenza tecnica e l’estensione alle popolazioni rurali (103). I centri dimostrativi e i banchi di prestito hanno il potenziale di aumentare la consapevolezza degli utenti circa la tecnologia assistiva disponibile (104), nonché di migliorare le conoscenze e le competenze dei professionisti e sostenere i processi decisionali (104). Così le persone possono provare gli apparecchi assistivi nel loro ambiente prima di decidere se sono adatti o meno ai i loro bisogni (91).
Sistemi di informazione sanitaria Come è stato sottolineato nel Capitolo 2, in molti paesi mancano le informazioni base circa la LM (105). E’ imperativo disporre di tali informazioni a livello individuale, dei servizi e della popolazione per poter facilitare la programmazione e la definizione del budget del settore sanitario, per guidare la prevenzione dei traumi e gli sforzi per promuovere la salute, per aiutare a orientare la 112
ricerca futura e per migliore gli esiti della riabilitazione (29, 106). Le informazioni dovrebbero essere raccolte a livello dell’individuo, dei servizi e della popolazione nei seguenti modi: 1. A livello individuale le informazioni dovrebbero comprendere l’età, il genere, il meccanismo e la causa del trauma, la data del trauma, il numero di giorni di ricovero in ospedale, le complicanze, altri traumi associati, i tipi di servizi ricevuti, gli esiti delle cure, lo stato neurologico, il luogo della dimissione e i successivi ricoveri (106–110). 2. A livello del servizio medico e riabilitativo, sono necessarie le informazioni circa i servizi, gli esiti dei servizi e il costo e i benefici dei servizi medici e riabilitativi a livello strutturale (2, 65, 111). Le informazioni possono includere i costi, le risorse umane, le risorse della struttura (ad es. i letti), il tipo di servizi, la frequenza del servizio, le referenze e le liste di attesa. Tutte le informazioni possono essere utilizzate e aggregate con i dati circa il progresso individuale sia per individuare i benefici economici e l’efficacia dei servizi sia per aiutare a mettere a punto la ricerca sanitaria, il finanziamento e l’assegnazione delle risorse (112–115). Ci dovrebbero essere inoltre valutazioni periodiche dei risultati e dell’efficacia (causa ed effetto) delle politiche, dei programmi e dei servizi medici e riabilitativi (116). 3. A livello della popolazione, la raccolta dei dati può essere utilizzata per determinare l’incidenza, la prevalenza e l’eziologia della LM e per tracciare le tendenze. Inoltre, è importante produrre informazioni circa le barriere e le agevolazioni che una persona sperimenta in termini di leggi e politiche, strutture organizzative, servizi oltre quelli della salute e la riabilitazione (ad es. trasporti) e gli atteggiamenti (109, 117).
Capitolo 5 Il rafforzamento dei sistemi sanitari
Riquadro 5.3. Ruote di cambiamento: verso servizi appropriati per utenti di carrozzine in Romania Il bisogno di servizi appropriati per carrozzine in Romania continua ad aumentare ogni anno. Nel 2010 è stato stimato che “una su ogni cinque persone bisognose di una carrozzina non la riceve...Chi non riceve questo servizio è completamente immobilizzato o deve cavarsela da solo” (99). La Fondazione Motivation Romania (MRF) è stata istituita nel 1995 per fornire programmi sostenibili volti ad aumentare la qualità della vita dei rumeni con disabilità e ha aiutato più di nove mila bambini ed adulti con disabilità motorie in Romania ad avere accesso a un pacchetto completo di servizi. Il programma carrozzine della MRF è cresciuto dai 20 utenti iniziali a circa 1.000 utenti serviti ogni anno con la formazione tra pari nell’uso delle attrezzature appropriate per la mobilità e per una vita indipendente. Inizialmente le carrozzine della MRF erano finanziate da donazioni e sovvenzioni. Ora, invece, sono finanziate in parte anche dalla National Health Insurance Agency (NHIA), che copre dal 16 al 30% delle richieste totali. Nel 2004, 2009 e 2011 i fondi dalla United States Agency for International Development (USAID) sono stati cruciali per aumentare la capacità del servizio della MRF per gli utenti di carrozzine. I fondi hanno sostenuto sette equipe regionali ognuna con un tecnico di carrozzina/istruttore per la vita indipendente (utente di carrozzina) e un fisioterapista per fornire i seguenti servizi:
■■ Valutazione e prescrizione di carrozzine: ciò comprende le dimensioni personalizzate per assicurare che la carrozzina sia adatta ai bisogni individuali di ogni utente.
■■ Fornitura di carrozzine e sedili specializzati: le carrozzine con e senza gli adattamenti sono fornite a una larga gamma di utenti e le attrezzature per i sedili specializzatati sono fornite specificamente a bambini con paralisi cerebrale. ■■ Istruzione per una vita indipendente: la formazione guidata da pari è disponibile per gli utenti di carrozzine e comprende l’addestramento nell’uso competente della carrozzina, l’igiene personale, l’auto-gestione (ad es. prevenzione e gestione delle ulcere da pressione ed infezioni del tratto urinario), la sessualità e l’inclusione, la consulenza e il sostegno da parte dei gruppi di pari. ■■ Sport in carrozzina ■■ Accessibilità architettonica: viene realizzata la prima risorsa elettronica nazionale sui palazzi accessibili con la carrozzina in Romania (100, 101). E’ necessario superare alcune sfide affinché più rumeni con disabilità motorie possano avere accesso alle carrozzine appropriate ed alla necessaria formazione. I rumeni che hanno bisogno di carrozzine hanno il diritto di riceverne una ogni cinque anni al prezzo base pagato dal NHIA ai distributori certificati. A volte ci vogliono molti mesi per l’approvazione dei fondi e i bisogni individuali di ogni utente non sono presi in considerazione perché questo prezzo non include la valutazione, gli adattamenti o la formazione nell’uso della carrozzina. La MRF ha tentato di sormontare queste sfide in diversi modi:
■■ La consapevolezza è aumentata tra gli specialisti della prescrizione di fornire carrozzine appropriate. Nel 2010, la MRF ha introdotto le linee guida della OMS-ISPO-USAID Guidelines on appropriate wheelchair provision in less resources settings [Linee guida sulla fornitura appropriata di carrozzine in contesti con meno risorse]. Nel 2011 la MRF ha organizzato il primo gruppo di lavoro per la formazione OMS per professionisti che prescrivono le carrozzine e ha in programma di estendere tale formazione a tutto il paese per aumentare la fornitura di carrozzine appropriate in Romania. Nel 2012 la MRF ha introdotto nella Romanian Code of Occupations (COR) una nuova professione – quella del tecnico della valutazione, delle prescrizioni e degli adattamenti delle carrozzine e si adopera per mettere a punto un programma di studio e un corso di formazione riconosciuti ufficialmente per questa professione in base al pacchetto dell’OMS per il servizio di formazione nell’uso della carrozzina (102). ■■ Un fondo per le carrozzine è stato istituito con l’aiuto di donatori per assicurare la fornitura appropriata e l’erogazione rapida. ■■ Sono stati raccolti fondi da donatori internazionali per coprire i bisogni nel medio termine. Attraverso gli sforzi per sormontare le sfide della fornitura di carrozzine in Romania, la MRF permette a più persone con disabilità motorie di avere accesso alle carrozzine di cui hanno bisogno e di sviluppare le competenze e la fiducia per poter partecipare all’istruzione, all’occupazione e alla vita comunitaria.
113
Prospettive Internazionali sulla lesione del midollo spinale
E’ importante istituire registri regionali e/o nazionali della LM (29). I paesi devono lavorare verso la messa a punto di sistemi di informazioni individuando le lacune nei dati circa la disponibilità e la qualità e dando priorità al tipo di informazione richiesta. Per facilitare il confronto e la comparazione dei dati a livello internazionale, regionale e nazionale è necessaria la coerenza nelle piattaforme e nella terminologia utilizzata (106). Il Capitolo 2 dà i dettagli circa le piattaforme internazionali messe a punto per aiutare i sistemi sanitari a raccogliere le informazioni sulla LM.
Finanziamento e accessibilità economica Barriere Le PLM hanno bisogno di accesso continuo alle cure mediche e alla riabilitazione dal momento del trauma e perciò i costi iniziali e quelli successivi associati alla LM possono essere significativi (40, 118). Tali costi variano secondo il contesto e il tipo in questione (40) e non possono essere generalizzati per tutti i contesti a causa delle differenze nelle strutture del sistema sanitario e nel finanziamento. Il Capitolo 2 offre maggiori dettagli in merito. Le PLM spesso devono affrontare altre spese sanitarie aggiuntive e pagare di tasca propria il che può mettere in difficoltà i singoli e le loro famiglie (79). In genere, le persone con disabilità hanno maggiori tassi di povertà rispetto alle persone senza disabilità (2) per cui è probabile che non possono permettersi i costi associati con l’assistenza sanitaria, la riabilitazione e la tecnologia assistiva. Uno studio svolto in Nigeria (uno dei pochi studi condotti in un paese a basso reddito) ha rivelato che per il 41,1% delle PLM che ha partecipato allo studio, i costi delle cure intensive rappresentano più del 50% del loro reddito annuo (119). In questo studio “i costi” hanno preso in considerazione sia i costi diretti (i costi ospedalieri) e i costi indiretti (ad es. la perdita di reddito). 114
Quando i costi della tecnologia assistiva non sono coperti o sovvenzionati da terzi, i prodotti possono essere inaccessibili per le PLM, particolarmente per coloro che vivono in ambienti a basso o a medio reddito (120). Uno studio condotto tra persone con disabilità (compresa la LM) in Uganda ha dimostrato che la prima barriera agli apparecchi assistivi era finanziaria – i costi dell’acquisto, della manutenzione e della sostituzione erano troppo alti (121). Una persona con la LM traumatica, che ha appena affrontato gli alti costi delle cure mediche e riabilitative, può non avere più fondi disponibili per comprare e mantenere una carrozzina adatta. Le barriere finanziare sono importanti anche negli ambienti ad alto reddito. Per esempio, negli Stati Uniti quasi la metà di tutta la tecnologia è ottenuta senza l’aiuto di terzi che pagano (19). I governi, le ONG e le compagnie di assicurazione sanitaria tipicamente pagano o sottoscrivono la fornitura di tecnologia assistiva “necessaria dal punto di vista medico”, ma i costi del servizio e i tetti massimi della copertura possono limitare l’accesso alla tecnologia (19). Le persone con disabilità spesso devono confrontarsi con i requisiti di eleggibilità, le restrizioni, le pratiche amministrative, le regole, i controlli, i rifiuti ed i dinieghi. Tutto ciò può portare ad iniquità per quanto riguardano i tipi di tecnologia che le persone provenienti da ambienti socioeconomici più bassi possono ottenere. Per esempio, è più probabile che le PLM da ambienti socioeconomici più bassi ricevano le carrozzine standard anziché quelle personalizzate per i loro bisogni (93).
Affrontare le barriere
I paesi devono assicurare la disponibilità di fondi adeguati per finanziare i servizi sanitari affinché tutte le persone, comprese le PLM, possano avere accesso ai servizi di cui hanno bisogno. Diverse opzioni di finanziamento possono potenzialmente accrescere la disponibilità di servizi sanitari per la popolazione in genere e per le PLM (2). Tali opzioni comprendono: raccogliere le risorse sufficienti per la salute mediante la
Capitolo 5 Il rafforzamento dei sistemi sanitari
riscossione più efficiente delle tasse; dare nuove priorità alle spese governative; fare raccolte di fondi in modo innovativo; migliorare l’efficienza globale del sistema sanitario. L’erogazione semplificata e coordinata dei servizi, ad esempio, può minimizzare i costi amministrativi, evitare la duplicazione e i ritardi nell’assistenza sanitaria e riabilitativa che possono portare alla necessità di cure sanitarie prolungate e più costose (ad es. ulcere da pressione). Alcune strategie per migliorare l’accesso alla tecnologia assistiva sono la promozione della produzione locale, la riduzione del dazio e della tassa d’importazione e il perfezionamento della scala economica in funzione del bisogno stabilito (2). Le cause dell’abbandono della tecnologia e i costi coinvolti suggeriscono l’opportunità di considerare il prestito, il noleggio o il riciclo dell’attrezzatura nel periodo in cui l’abbandono è più probabile (91). In alcuni paesi, i modelli nazionali o statali di assicurazione, l’assicurazione obbligatoria contro terzi o la donazione volontaria danno risarcimenti a persone che subiscono la LM traumatica, per esempio, come risultato di incidenti stradali. Nella Svizzera, l’iscrizione attraverso una piccola donazione annua all’associazione di benefattori gestita dalla Fondazione paraplegica svizzera, dà diritto ad una copertura sostanziosa dei costi nel caso di una LM traumatica. L’iscrizione nell’associazione è aperta a tutti a prescindere dal luogo di residenza, del luogo dell’incidente o delle cure (122). Nella Nuova Zelanda, la Accident Compensation Corporation [Società per il risarcimento degli incidenti] fornisce una copertura completa, senza colpa, per le lesioni personali (indipendentemente dalla causa) per tutti i residenti della Nuova Zelanda e per i visitatori (123). L’ente è finanziato attraverso le imposte sul reddito delle persone, dai libri paga delle società, sui costi dei carburanti per i veicoli e sulle tasse per le patenti come pure con altri fondi governativi. Dato che sono molte le cause associate con la LM, bisogna avere altri meccanismi in funzione affinché le persone siano protette dai rischi
finanziari associati con l’uso dei servizi sanitari e riabilitativi. In vista degli elevati costi associati con la LM è essenziale che l’assicurazione sanitaria sia accessibile economicamente, per minimizzare la necessità di pagare direttamente nel luogo delle cure. I piani di assicurazione contro la disabilità possono fornire una fonte sicura e coerente di appoggio per i servizi e per le persone con disabilità (ad es. (124)). La cooperazione internazionale è necessaria dato che in molti paesi in via di sviluppo possono esserci risorse carenti necessarie per istituire i servizi specialistici per le PLM. L’articolo 32 della CRPD mette in rilievo la necessità degli Stati che hanno aderito di intraprendere provvedimenti con altri Stati, insieme alle organizzazioni internazionali e regionali e alla società civile, per fornire l’assistenza economica e tecnica volta a facilitare l’accesso all’assistenza sanitaria, alla riabilitazione e alle tecnologie assistive (21).
Ricerca Cure emergenti Da decenni si porta avanti la ricerca relativa alle cure mediche e alla riabilitazione della LM e, come risultato, ci sono stati molti progressi che hanno permesso alle PLM di mantenere una qualità di vita alta e di vivere a lungo quanto la popolazione in generale. Ci sono state delle innovazioni considerevoli nella tecnologia assistiva che hanno beneficiato le PLM che possono accedervi. Per esempio, i progressi nella tecnologia della carrozzina hanno significato che i bisogni delle PLM sono soddisfatti meglio attraverso i meccanismi che permettono di inclinarsi e reclinarsi e con il poggia gambe che si eleva aiutano l’allineamento posturale, il funzionamento (compreso il funzionamento fisiologico), la spasticità, le contratture, la gestione della pressione, il comfort e altre questioni (125). Lo sviluppo degli ambienti virtuali e della robotica (126, 127), come pure quello delle tecnologie informatiche, permettono sia l’utilizzo della parola o dei movimenti degli occhi per scrivere a 115
Prospettive Internazionali sulla lesione del midollo spinale
macchina che l’introduzione delle tastiere alternative (128, 129), aiutando a facilitare la riabilitazione e il coinvolgimento nelle attività della vita. La ricerca sul controllo neurologico degli apparecchi ha determinato lo sviluppo di braccia protesiche che si possono muovere attraverso il pensiero di ciò che si desidera fare (120). Alcune cure potenziali per la LM incominciano ad apparire. Alcune di esse sono ancora in via di sperimentazione animale, mentre altre sono allo stadio pre-clinico di ricerca e alcune cure incoraggianti sono attualmente sperimentate con gli esseri umani (130–133). Le cure come la terapia con le cellule staminali causano molte controversie legate alle problematiche scientifiche, di sicurezza ed etiche coinvolte (Vedi Riquadro 5.4). Malgrado gli sforzi dei ricercatori, attualmente non ci sono cure in grado di ripristinare o riparare la lesione midollare. In generale i ricercatori biomedici sono convinti che in futuro sia probabile che una combinazione di nuove cure, unite alle cure mediche e alla riabilitazione esistenti, potranno ottenere progressi reali e significativi nel ripristino o nella riparazione del midollo spinale (133). Le PLM e le loro famiglie in cerca di nuove cure con la speranza di una guarigione devono essere consapevoli della complessità e dell’incertezza in questo campo. E’ necessario incoraggiarli a cercare consigli da molteplici fonti, quali specialisti clinici, ricercatori rispettabili e le PLM che possono aver sperimentato alcune di queste terapie.
personale sanitario ed altri saranno meno capaci di prendere le decisioni cliniche informate circa gli interventi appropriati e di aiutare le PLM a fare scelte informate circa le loro cure. Nell’area della tecnologia assistiva attualmente ci sono poche prove empiriche circa gli effetti dei risultati per le PLM (147, 148). Senza la ricerca sui risultati nell’area della tecnologia assistiva per le PLM sarà difficile determinare che cosa funziona, se funziona bene e per chi funzionerà.
Conclusione e raccomandazioni Questo Capitolo ha offerto una ampia visione d’insieme dei modi in cui è possibile rafforzare i sistemi sanitari affinché le PLM possano avere accesso ai servizi sanitari (che comprende la riabilitazione e gli apparecchi assistivi) di cui hanno bisogno. Basate sulle prove presentate in questo Capitolo bisognerebbe prendere in considerazione le seguenti raccomandazioni. Una larga gamma di attori deve avere un ruolo da svolgere e dovrebbe essere consultata quando si tenta di applicare tali raccomandazioni.
Guida ed organizzazione ■ Effettuare un’analisi esauriente della situazione per avere uno studio di base per la pianificazione nazionale sostenibile. ■ Mettere a punto o revisionare le politiche e i piani nazionali secondo l’analisi della situazione e dei dati migliori disponibili dalla ricerca e dalle prassi più efficaci. ■ Sviluppare partenariati con altri settori rilevanti (ad es. istruzione, occupazione, trasporti, settori sociali) per accrescere la possibilità di avere migliori risultati sanitari per le PLM. ■ Intraprendere dialoghi con gli attori chiave della politica per trarre vantaggio dai dati della ricerca e dalle conoscenze, le esperienze e i punti di vista delle persone coinvolte o interessate alle future decisioni politiche.
Altra ricerca
Non sono disponibili dati sufficienti circa i modelli più appropriati di erogazione dei servizi per le PLM. Occorre ulteriore ricerca sul servizio sanitario per determinare i tassi di accesso (19) e per individuare i modelli di erogazione dei servizi che sono più economicamente vantaggiosi ed equi per poter migliorare l’accesso. Le linee guida basate sulle prove sono necessarie per un’ampia gamma di attori, tra cui le PLM, il personale sanitario, i governi e gli enti che raccolgono i fondi. Senza tali linee guida il 116
Capitolo 5 Il rafforzamento dei sistemi sanitari
Riquadro 5.4. La terapia staminale: speranza o montatura? La scoperta delle cellule staminali del sistema nervoso e i progressi rapidi nella biologia staminale hanno creato la speranza che le cure staminali possono contribuire all’inversione delle gravi malattie neurologiche tra cui la LM. Tale scoperta ha anche creato l’occasione commerciale per imprenditori nelle giurisdizioni meno regolate di vendere le cure staminali a persone con gravi malattie che cercano disperatamente la guarigione risultando nel cosiddetto “turismo staminale”. Queste cure non sono state testate sufficientemente né valutate in prove cliniche regolarmente programmate né hanno ricevuto l’approvazione regolamentare da enti riconosciuti come la United States Food and Drug Administration. Alcune variabili hanno contributo allo sviluppo rapido del turismo staminale (134) tra cui l’uso riuscito delle cure staminali per le malattie ematologiche come la leucemia. Gli imprenditori che hanno accesso alle strutture che trattano con queste cellule di laboratorio, sono in grado di prepararle e consegnarle per una varietà di applicazioni non comprovate. Inoltre, l’accesso ad Internet ha creato occasioni per pubblicità inedita (135), mentre la disponibilità di cure nei paesi come la Cina e l’India ha aumentato il turismo medico (136). Gli imprenditori staminali sostengono che le cure efficaci vengono negate alle PLM a causa di requisiti regolatori ostruttivi, scienziati troppo cauti e programmi di ricerca troppo rigidi che includono gli studi randomizzati ed i gruppi di controllo (137). Tuttavia, oltre ai rapporti aneddotici, questi imprenditori hanno contributo poco ai dati vitali che devono essere raccolti prima che le cellule staminali possano essere utilizzate in modo sicuro ed efficace. Spesso manca il monitoraggio esauriente a lungo termine per determinare le effettive conseguenze delle cure. Quando le cure staminali sono offerte insieme alla riabilitazione diventa difficile determinare se il primo o il secondo sia stato responsabile di qualunque miglioramento funzionale. Uno dei primi articoli pubblicati criticando il turismo staminale riguardava gli esami neurologici delle PLM prima e dopo l’impianto diretto nel midollo spinale delle cellule fetali (138). I rapporti scritti in seguito da investigatori cinesi hanno cercato di chiarire quali individui possono beneficiare dalla procedura di trapianto (139). Sono state descritte gravi complicanze dopo il trapianto di cellule staminali fetali (140). Molte organizzazioni senza fini di lucro ed enti governativi hanno rilasciato dichiarazioni descrivendo i rischi del turismo staminale e hanno creato strumenti istruttivi per le PLM e le loro famiglie da prendere in considerazione prima di sottomettersi alle cure staminali. I principi chiave che ne emergono sono: gli studi clinici non dovrebbero mai richiedere pagamento dai pazienti o dai loro familiari; le cure devono essere caratterizzate in modo adeguato; i dati farmacologici o tossicologici devono essere migliorati per poter dimostrare scientificamente la loro sicurezza ed efficacia; un indicatore chiave che la terapia staminale è discutibile è quando la pubblicità asserisce che una sola cura è efficace per tutta una serie di malattie (141). Vi è il rischio che la ricerca staminale legittima verrà discreditata dai ricercatori furfanti che offrono terapie non comprovate. Un risultato ottenuto dall’aumento dei controlli governativi è che alcune cliniche staminali sono state chiuse, alcune in seguito a gravi eventi avversi (142), mentre altre sono state multate per pubblicità fraudolenta. Ora informazioni istruttive sono disponibili per rendere noti i rischi della terapia staminale (143) concentrando l’attenzione sui problemi etici e sulle difficoltà del consenso informato che possono sorgere nel contesto del malinteso terapeutico (131). Si fanno tentativi per distinguere tra la valida innovazione medica e l’applicazione senza fondamento delle cellule staminali come terapia (144, 145). Tuttavia, l’attrazione di una potenziale cura è un potente richiamo, particolarmente quando è unita a rapporti aneddotici di cambiamenti notevoli nei pazienti. Perciò, le PLM potrebbero continuare a comprare queste cure che inducono speranza (146) fino a quando esse diventeranno una potente realtà comprovata scientificamente per curare la LM acuta e cronica.
■ I donatori multilaterali o bilaterali dovreb-
bero fornire il supporto adeguato finanziario e tecnico per i paesi in via di sviluppo attraverso la cooperazione internazionale sostenibile e trasparente.
Erogazione dei servizi ■ Disegnare lo schema dei servizi esistenti importanti per le PLM, individuare le barriere all’accesso e rafforzare la capacità di 117
Prospettive Internazionali sulla lesione del midollo spinale
tali servizi, evitare la duplicazione o la creazione di servizi paralleli. ■ Garantire che ci siano i servizi appropriati per l’erogazione dei servizi per le PLM. Dove le risorse sono adeguate ciò dovrebbe comprendere l’accesso ai servizi specializzati. Negli ambienti con meno risorse, occorre sviluppare i reparti o le equipe spinali negli ospedali generali. In tutti gli ambienti occorrono sistemi per garantire le cure continuative una volta che la persona è stata dimessa alla comunità. ■ Istituire comunicazione e sistemi di referenza efficaci per garantire il coordinamento durante le tre fasi di assistenza: (i) assistenza medica pre-ospedaliera ed in fase acuta; (ii) assistenza medica post acuta e la riabilitazione; e (iii) il mantenimento della salute. ■ Coinvolgere le PLM e i loro familiari come soci nell’erogazione dei servizi: dare loro le informazioni e coinvolgerli nelle prese di decisione, nella pianificazione, nella scelta degli obiettivi, nel monitoraggio e nella valutazione.
■ Far sì che i familiari, come pure le PLM stesse, hanno l’opportunità di ricevere formazione e supporto.
Tecnologie sanitarie ■ Stabilire linee guida trasparenti ed eque di idoneità per permettere alle PLM di avere accesso alla tecnologia assistiva. ■ Individuare i modelli economicamente convenienti per la fornitura della tecnologia assistiva. ■ Garantire che i servizi della tecnologia assistiva rispondano ai bisogni individuali, permettano la scelta e si adattino all’invecchiamento ed altri cambiamenti della vita. ■ Permettere ai produttori locali della tecnologia assistiva insieme ai gruppi industriali internazionali, negli ambienti a basso reddito, di contribuire alle normative nazionali della tecnologia sanitaria.
Informazioni sanitarie ■ Far sì che ci siano all’interno dei servizi sanitari, sistemi appropriati e standardizzati di raccolta dati sullo stato di salute. ■ Raccogliere e analizzare i dati circa le cause della lesione, insieme a dati clinici, gestionali e dei risultati, per informare la pianificazione e le prese di decisione per l’individuo e per i servizi.
Risorse umane ■ Promuovere l’accesso alla formazione specialista per assicurare una scorta adeguata di medici preparati a livello nel campo della medicina fisica e riabilitativa; terapisti occupazionali; fisioterapisti; tecnici ortesisti-protesisti; logoterapisti, ingegneri della riabilitazione e personale tecnico per le carrozzine. ■ Rafforzare i programmi esistenti di formazione per includere in maniera opportuna la LM e la tecnologia assistiva. ■ Appoggiare le opportunità per continuare lo sviluppo professionale sia per la riabilitazione che per il personale sanitario tradizionale. ■ Ingaggiare professionisti non sanitari, come per esempio i pari, per aiutare nell’erogazione di una serie completa di servizi sanitari e riabilitativi. 118
Finanziamenti ed accessibilità ■ Assegnare finanziamenti sufficienti per ser■ Far sì che i piani assicurativi siano adeguati a proteggere le persone contro i costi relativi al pre- e post-infortunio. ■ Assicurare che le PLM possono avere accesso all’assicurazione sanitaria completa ed economicamente abbordabile. vizi specializzati per le PLM.
Capitolo 5 Il rafforzamento dei sistemi sanitari
■ Sviluppare i partenariati internazionali per
ottenere l’assistenza tecnica e finanziaria a sostegno dei servizi per PLM a lungo termine.
Ricerca ■ Sostenere la condotta della ricerca basata ■ Diffondere le informazioni oggettive sui rigorosamente sui dati e sulle prove. nuovi sviluppi relativi alle cure della LM
per gli attori interessati, comprese le PLM e le loro famiglie. ■ Realizzare la ricerca sui sistemi sanitari per determinare i tassi di accesso all’assistenza sanitaria e ai servizi riabilitativi e per individuare i modelli più economicamente convenienti ed efficienti per l’erogazione dei servizi. ■ Far sì che le linee guida basate sulle prove siano disponibili e che vengano utilizzate dal personale sanitario e riabilitativo.
Referenze De Savigny D, Adam T. Systems thinking for health systems strengthening. Geneva, World Health Organization/Alliance for Health Policy and Systems Research, 2009. 2. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/ publications/2011/9789240685215_eng.pdf, accessed 12 April 2012). 3. Iezzoni LI et al. Mobility impairments and use of screening and preventive services. American Journal of Public Health, 2000, 90:955-961. doi: http://dx.doi.org/10.2105/AJPH.90.6.955 PMID:10846515 4. Iezzoni LI, O’Day BL. More than ramps. A guide to improving health care quality and access for people with disabilities. New York, NY, Oxford University Press, 2006. 5. Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 2001, 15:600-606. doi: http://dx.doi.org/10.1191/0269215501cr453oa PMID:11777090 6. Munce SEP et al. Physician utilization among adults with traumatic spinal cord injury in Ontario: a population-based study. Spinal Cord, 2009, 47:470-476. doi: http://dx.doi.org/10.1038/sc.2008.173 PMID:19153588 7. Dryden DM et al. Utilization of health services following spinal cord injury: a 6-year follow-up study. Spinal Cord, 2004, 42:513525. doi: http://dx.doi.org/10.1038/sj.sc.3101629 PMID:15249928 8. Laursen B, Helweg-Larsen K. Health service use in adults 20–64 years with traumatic brain injury, spinal cord injury or pelvic fracture. A cohort study with 9-year follow-up. BMJ Open, 2012, 2:e001521. doi: http://dx.doi.org/10.1136/bmjopen-2012-001521 PMID:23103605 9. McColl MA et al. Primary care for people with SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3. Vancouver, SCIRE, 2010 (pp. 1−24) (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 10. van Loo MA et al. Care needs of persons with long-term spinal cord injury living at home in the Netherlands. Spinal Cord, 2010, 48:423-428. doi: http://dx.doi.org/10.1038/sc.2009.142 PMID:19884896 11. Eide AH et al. Living conditions among people with activity limitation in Zimbabwe: a representative regional survey. Oslo, SINTEF, 2003. 12. Eide AH, van Rooy G, Loeb ME. Living conditions among people with activity limitations in Namibia: a representative national study. Oslo, SINTEF, 2003. 13. Loeb ME, Eide AH, editors. Living conditions among people with activity limitations in Malawi: a national representative study. Oslo, SINTEF, 2004. 14. Eide A, Loeb M. Living conditions among people with activity limitations in Zambia: a national representative study. Oslo, SINTEF, 2006. 15. Eide AH, Kamaleri Y. Living conditions among people with disabilities in Mozambique: a national representative study. Oslo, SINTEF, 2009. 16. Cott CA. Client-centred rehabilitation: client perspectives. Disability and Rehabilitation, 2004, 26:1411-1422. doi: http://dx.doi. org/10.1080/09638280400000237 PMID:15764361 17. Whalley Hammell K. Experience of rehabiltiation following spinal cord injury. Spinal Cord, 2007, 45:260-274. PMID:17310257 18. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. 19. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disability and Rehabilitation, 2003, 25:487-490. doi: http://dx.doi.org/10.1080/0963828031000071723 PMID:12745944 1.
119
Prospettive Internazionali sulla lesione del midollo spinale
20. Post MWM et al. Services for spinal cord injured: availability and satisfaction. Spinal Cord, 1997, 35:109-115. doi: http://dx.doi. org/10.1038/sj.sc.3100362 PMID:9044519 21. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 22. South-North Centre for Dialogue and Development. Global survey of government actions on the implementation of the standard rules of the equalization of opportunities for persons with disabilities. Amman, Office of the United Nations Special Rapporteur on Disabilities, 2006:1−141. 23. Dejong G et al. The organization and financing of health services for persons with disabilities. The Milbank Quarterly, 2002, 80:261-301. doi: http://dx.doi.org/10.1111/1468-0009.t01-1-00004 PMID:12101873 24. China Disabled Persons’ Federation. Law on the Protection of Persons with Disabilities, 10 April 2008 (http://www.cdpf.org.cn/ english/law/content/2008-04/10/content_84949.htm, accessed 20 May 2012). 25. Chen J et al. eds. Inter–province transfer of 10,373 patients injured in Wenchuan earthquake. Journal of Evidence-Based Medicine, 2009, 2:270-276. doi: http://dx.doi.org/10.1111/j.1756-5391.2009.01053.x PMID:21349026 26. Li Y et al. Evaluation of functional outcomes of physical rehabilitation and medical complications in spinal cord injury victims of the Sichuan earthquake. Journal of Rehabilitation Medicine, 2012, 44:534-540. doi: http://dx.doi.org/10.2340/16501977-1005 PMID:22674233 27. Hu X et al. Analysis of functional status, quality of life and community integration in earthquake survivors with spinal cord injury at hospital discharge and one-year follow-up in the community. Journal of Rehabilitation Medicine, 2012, 44:200-205. doi: http:// dx.doi.org/10.2340/16501977-0944 PMID:22367060 28. WHO. Prehospital trauma care systems. Geneva, World Health Organization, 2005. 29. ESCIF. European Spinal Cord Injury Federation (ESCIF) web page. Nottwil, Switzerland, European Spinal Cord Injury Federation, 2012 (http://www.escif.org/, accessed 20 March 2012). 30. Aito S. Complications during the acute phase of traumatic spinal cord lesions. Spinal Cord, 2003, 41:629-635. doi: http://dx.doi. org/10.1038/sj.sc.3101513 PMID:14569264 31. Bagnall AM et al. Spinal fixation surgery for acute traumatic spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (1):CD004725. PMID:18254059 32. Chappell P, Wirz S. Quality of life following spinal cord injury for 20–40 year old males living in Sri Lanka. Asia Pacific Disability Rehabilitation Journal, 2003, 14:162-178. 33. De Vivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and cause of death among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1411-1419. doi: http://dx.doi.org/10.1016/S0003-9993(99)90252-6 PMID:10569435 34. Burns AS, Ditunno JF. Establishing prognosis and maximising functional outcomes after spinal cord injury: a review of current and future directions in rehabilitation management. Spine, 2001, 26 Suppl:S137-S145. doi: http://dx.doi.org/10.1097/00007632200112151-00023 PMID:11805621 35. Fromovich-Amit Y et al. Properties and outcomes of spinal rehabilitation units in four countries. Spinal Cord, 2009, 47:597-603. doi: http://dx.doi.org/10.1038/sc.2008.178 PMID:19172151 36. Illis LS. The case for specialist units. Spinal Cord, 2004, 42:443-446. doi: http://dx.doi.org/10.1038/sj.sc.3101633 PMID:15197413 37. Kiekens C et al. Organisation and financing of musculoskeletal and neurological rehabilitation in Belgium: KCE reports 57S. Brussels, Belgian Health Care Knowledge Centre, 2007 (https://kce.fgov.be/sites/default/files/page_documents/d20071023020.pdf, accessed 20 March 2012). 38. New PW. A multidisciplinary consultation team to address the unmet needs of hospitalized spinal cord injury patients. Archives of Neurology, 2010, 67:1074-1076. doi: http://dx.doi.org/10.1001/archneurol.2010.204 PMID:20837850 39. New PW. Non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? Australian Health Review, 2006, 30:353-361. doi: http://dx.doi.org/10.1071/AH060353 PMID:16879094 40. Priebe MM et al. Spinal cord injury medicine: economic and societal issues in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl 1:S84-S88. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.005 PMID:17321854 41. Scivoletto G, Morganti B, Molinari M. Early versus delayed inpatient spinal cord injury rehabilitation: an Italian study. Archives of Physical Medicine and Rehabilitation, 2005, 86:512-516. doi: http://dx.doi.org/10.1016/j.apmr.2004.05.021 PMID:15759237 42. Smith M. Efficacy of specialist versus non-specialist management of spinal cord injury within the UK. Spinal Cord, 2002, 40:10-16. doi: http://dx.doi.org/10.1038/sj.sc.3101226 PMID:11821964 43. New PW et al. International comparison of the organisation of rehabilitation services and systems of care for patients with spinal cord injury. Spinal Cord, 2012, 51:33-39. PMID:22801190
120
Capitolo 5 Il rafforzamento dei sistemi sanitari
44. van Langeveld SA et al. Comparing content of therapy for people with a spinal cord injury in postacute inpatient rehabilitation in Australia, Norway, and the Netherlands. Physical Therapy, 2011, 91:210-224. doi: http://dx.doi.org/10.2522/ptj.20090417 PMID:21212372 45. Borg J, Lindström A, Larsson S. Assistive technologies in developing countries: national and international responsibilities to implement the Convention on the Rights of Persons with Disabilities. Lancet, 2009, 374:1863-1865. doi: http://dx.doi.org/10.1016/ S0140-6736(09)61872-9 PMID:19944867 46. LaVela SL et al. Geographical proximity and health care utilization in veterans with SCI&D in the USA. Social Science & Medicine, 2004, 59:2387-2399. doi: http://dx.doi.org/10.1016/j.socscimed.2004.06.033 PMID:15450711 47. Middleton JW et al. Issues and challenges for development of a sustainable service model for people with spinal cord injury living in rural regions. Archives of Physical Medicine and Rehabilitation, 2008, 89:1941-1947. doi: http://dx.doi.org/10.1016/j. apmr.2008.04.011 PMID:18929022 48. Grabois EW et al. Accessibility of primary care physicians’ offices for people with disabilities: and analysis of compliance with the Americans with Disabilities Act. Archives of Family Medicine, 1999, 8:44-51. doi: http://dx.doi.org/10.1001/archfami.8.1.44 PMID:9932071 49. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/oti.228 PMID:17624872 50. Pearlman J et al. Lower-limb prostheses and wheelchairs in low-income countries. IEEE Engineering in Medicine and Biology Magazine, 2008, 27:12-22. doi: http://dx.doi.org/10.1109/EMB.2007.907372 PMID:18463017 51. Pearlman J et al. Design, development and testing of a low-cost electric powered wheelchair for India. Disability and Rehabilitation. Assistive Technology, 2009, 4:42-57. doi: http://dx.doi.org/10.1080/17483100802338440 PMID:19172480 52. Goodwin JS et al. Epidemiology of Medicare abuse: the example of power wheelchairs. Journal of the American Geriatrics Society, 2007, 55:221-226. doi: http://dx.doi.org/10.1111/j.1532-5415.2007.01063.x PMID:17302658 53. Bergström AL, Samuelsson K. Evaluation of manual wheelchairs by individuals with spinal cord injuries. Disability and Rehabilitation. Assistive Technology, 2006, 1:175-182. doi: http://dx.doi.org/10.1080/17483100600573230 PMID:19260185 54. May LA et al. Wheelchair back-support options: functional outcomes for persons with recent spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1146-1150. doi: http://dx.doi.org/10.1016/j.apmr.2003.08.105 PMID:15241766 55. Kittel A, Di Marco A, Stewart H. Factors influencing the decision to abandon manual wheelchairs for three individuals with a spinal cord injury. Disability and Rehabilitation, 2002, 24:106-114. doi: http://dx.doi. org/10.1080/09638280110066785 PMID:11827144 56. Mukherjee G, Samanta A. Wheelchair charity: a useless benevolence in community-based rehabilitation. Disability and Rehabilitation, 2005, 27:591-596. doi: http://dx.doi.org/10.1080/09638280400018387 PMID:16019868 57. Oderud T et al. User satisfaction survey: an assessment study on wheelchairs in Tanzania. In: Sheldon S, Jacobs NA, eds. Report of a consensus conference on wheelchairs for developing countries, Bengaluru, India, 6–11 November 2006. Copenhagen, International Society for Prosthetics and Orthotics, 2007 (pp. 112–117). 58. New PW, Simmonds F, Stevermuer T. Comparison of patients managed in specialised spinal rehabilitation units with those managed in non-specialised rehabilitation units. Spinal Cord, 2011, 49:909-916. doi: http://dx.doi.org/10.1038/ sc.2011.29 PMID:21468042 59. Divanoglou A, Seiger A, Levi R. Acute management of traumatic spinal cord injury in a Greek and a Swedish region: a prospective, population-based study. Spinal Cord, 2010, 48:477-482. doi: http://dx.doi.org/10.1038/sc.2009.160 PMID:20029396 60. Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord, 2003, 41:303-309. doi: http://dx.doi. org/10.1038/sj.sc.3101443 PMID:12714994 61. Soopramanien A et al. Using telemedicine to provide post-discharge support for patients with spinal cord injuries. Journal of Telemedicine and Telecare, 2005, 11 Suppl 1:68-70. doi: http://dx.doi.org/10.1258/1357633054461633 PMID:16036001 62. Dallolio L et al. Functional and clinical outcomes of telemedicine in patients with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:2332-2341. doi: http://dx.doi.org/10.1016/j.apmr.2008.06.012 PMID:19061746 63. Young-Hughes S, Simbarti L. Spinal cord injury/disorder teleconsultation outcome study. Rehabilitation Nursing, 2011, 36:153-158. doi: http://dx.doi.org/10.1002/j.2048-7940.2011.tb00083.x PMID:21721396 64. Burns RB et al. Using telerehabilitation to support assistive technology. Assistive Technology, 1998, 10:126-133. doi: http://dx.doi. org/10.1080/10400435.1998.10131970 PMID:10339280 65. WHO. Increasing access to health workers in remote and rural areas through improved retention. Geneva, World Health Organization, 2010.
121
Prospettive Internazionali sulla lesione del midollo spinale
66. Warf BC, Wright EJ, Kulkarni AV. Factors affecting survival of infants with myelomeningocele in southeastern Uganda. Journal of Neurosurgery Pediatrics, 2011, 7:127-133. doi: http://dx.doi.org/10.3171/2010.11.PEDS10428 PMID:21284456 67. WHO. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. 68. Brown-Triolo DL et al. Consumer perspectives on mobility: implications for neuroprosthesis design. Journal of Rehabilitation Research and Development, 2002, 39:659-669. PMID:17943668 69. New Zealand Spinal Trust. Resources and information. web site. Christchurch, New Zealand, New Zealand Spinal Trust, 2012 (http://www.nzspinaltrust.org.nz/library_resources_info.asp, accessed 12 April 2012). 70. Sherman JE, DeVinney DJ, Sperling KB. Social support and adjustment after spinal cord injury: influence of past peermentoring experiences and current live-in partner. Rehabilitation Psychology, 2004, 49:140-149. doi: http://dx.doi. org/10.1037/0090-5550.49.2.140 71. Ljungberg I et al. Using peer mentoring for people with spinal cord injury to enhance self efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 2011, 20:351-358. doi: http://dx.doi.org/10.1111/j.13652702.2010.03432.x PMID:21219518 72. Motivation UK. web site, Bristol, United Kingdom, Freedom through mobility, 2012 (http://www.motivation.org.uk, accessed 17 April 2012). 73. Horton R. A new epoch for health professionals’ education. Lancet, 2010, 376:1875-1877. doi: http://dx.doi.org/10.1016/S01406736(10)62008-9 PMID:21112621 74. WHO. Everybody’s business: strengthening health systems to improve health outcomes. Geneva, World Health Organization, 2007. 75. Long TM et al. Training needs of pediatric occupational therapists in assistive technology. The American Journal of Occupational Therapy, 2007, 61:345-354. doi: http://dx.doi.org/10.5014/ajot.61.3.345 PMID:17569392 76. Gitlow L, Sanford T. Assistive technology education needs of allied health professionals in a rural state. Journal of Allied Health, 2003, 32:46-51. PMID:12665293 77. Bachman S et al. Provider perceptions of their capacity to offer accessible health care for people with disabilities. Journal of Disability Policy Studies, 2006, 17:130-136. doi: http://dx.doi.org/10.1177/10442073060170030101 78. Donnelly C et al. Utilization, access and satisfaction with primary care among people with spinal cord injuries: a comparison of three countries. Spinal Cord, 2007, 45:25-36. doi: http://dx.doi.org/10.1038/sj.sc.3101933 PMID:16733520 79. Neri MT, Kroll T. Understanding the consequences of access barriers to health care: experiences of adults with disabilities. Disability and Rehabilitation, 2003, 25:85-96. PMID:12554383 80. Scheer J et al. Access barriers for persons with disabilities: the consumer’s perspective. Journal of Disability Policy Studies, 2003, 13:221-230. doi: http://dx.doi.org/10.1177/104420730301300404 81. WHO. Framework for action on interprofessional education and collaborative practice. Geneva, World Health Organization, 2010. 82. eLearnSCI. Modules [web site], 2012 (http://www.elearnsci.org/, accessed 20 May 2012). 83. SCIPT. International Network of SCI Physiotherapists web site. International Network of SCI Physiotherapists, 2012 (http://www. scipt.org/, accessed 12 April 2012). 84. ISCoS. International Spinal Cord Society web site, Aylesbury, United Kingdom, 2012 (http://www.iscos.org.uk/, accessed 20 March 2012). 85. Nwankwo OE, Katchy A. Outcome of a 12 week programme for management of the spinal cord injured with participation of patient’s relations at Hilltop Orthopaedic Hospital, Enugu, Nigeria. Spinal Cord, 2003, 41:129-133. doi: http://dx.doi.org/10.1038/ sj.sc.3101410 PMID:12595877 86. Vitality. Vital change for spinal cord injury in Development Nations [web page]. London, United Kingdom, 2012 (http://www. vitalchange.org.uk/vitality/, accessed 12 April 2012). 87. WHO. Essential health technologies [web page]. Geneva, Switzerland, WHO, 2012 (http://www.who.int/eht/en/, accessed 12 April 2012). 88. Pearlman J et al. Towards the development of an effective technology transfer model of wheelchairs to developing countries. Disability and Rehabilitation. Assistive Technology, 2006, 1:103-110. doi: http://dx.doi. org/10.1080/09638280500167563 PMID:19256173 89. Jefferds AN et al. Current state of mobility technology provision in less-resourced countries. Physical Medicine and Rehabilitation Clinics of North America, 2010, 21:221-242. doi: http://dx.doi.org/10.1016/j.pmr.2009.07.011 PMID:19951788 90. Copley J, Ziviani J. Barriers to the use of assistive technology for children with multiple disabilities. Occupational Therapy International, 2004, 11:229-243. doi: http://dx.doi.org/10.1002/oti.213 PMID:15771212 91. Phillips B, Zhao H. Predictors of assistive technology abandonment. Assistive Technology, 1993, 5:36-45. doi: http://dx.doi.org/10.1 080/10400435.1993.10132205 PMID:10171664
122
Capitolo 5 Il rafforzamento dei sistemi sanitari
92. Scherer MJ. Outcomes of assistive technology use on quality of life. Disability and Rehabilitation, 1996, 18:439-448. doi: http:// dx.doi.org/10.3109/09638289609165907 PMID:8877302 93. Hunt PC et al. Demographic and socioeconomic factors associated with disparity in wheelchair customizability among people with traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1859-1864. doi: http://dx.doi. org/10.1016/j.apmr.2004.07.347 PMID:15520982 94. Glumac LK et al. Guatemalan caregivers’ perceptions of receiving and using wheelchairs donated for their children. Pediatric Physical Therapy, 2009, 21:167-175. doi: http://dx.doi.org/10.1097/PEP.0b013e3181a34a2b PMID:19440126 95. Mobility without Barriers Foundation web site, Burlington, USA, Mobility without Barriers, 2012 (http://www.worldmobility.org/, accessed 17 April 2012). 96. Cooper RA et al. Advances in electric-powered wheelchairs. Topics in Spinal Cord Injury Rehabilitation, 2006, 11:15-29. doi: http:// dx.doi.org/10.1310/ACUK-KFYP-ABEQ-A30C 97. Enable NSW. Guidelines for the prescription of a seated wheelchair or mobility scooter for people with a traumatic brain injury or spinal cord injury. Sydney, Enable NSW and Lifetime Care and Support Authority, 2011 (http://www.lifetimecare.nsw.gov.au// Spinal_Cord_Injury.aspx, accessed 27 February 2011). 98. Lindstrom A. Appropriate technologies for assistive devices in low-income counties. In: Hsu JD, Michael JW, Fisk JR. AAOS atlas of orthoses and assistive devices. Philadelphia, PA, Mosby Elsevier, 2008. 99. Romanian Academic Society (SAR). Imobilizat sau integrat? Statul si accesul la echipamente de mobilitate si la servicii de viata independenta. Isolated or included? The state and access to mobility equipments and independent living services. November 2010, p.1 (http://www.motivation.ro/uploads/studii%20SAR/Policy%20brief%20Imobilizat%20sau%20integrat%209%20nov%202010. pdf accessed 29 May 2012) 100. MRF. Motivation Romania Foundation. Accessibility map. web site (http://www.accesibil.org, accessed 24 April 2013). 101. MRF. Motivation Romania Foundation, 2012 web site (http://www.motivation.ro/en, accessed 24 April 2013). 102. WHO. Wheelchair service training package. Geneva, World Health Organization, 2013 (http://www.who.int/disabilities/ publications/technology/wheelchair/training/en, accessed 27 April 2013). 103. Assistive Technology Act. United States Congress 2004 (Public Law 108–364) (http://www.ataporg.org/summaryact.html, accessed 2 August 2011). 104. Beck R. Enable Ireland: action on disability. Dublin, Enable Ireland, 2008 (http://www.enableireland.ie, accessed 20 April 2013). 105. Cripps RA et al. A global map for traumatic spinal cord injury epidemiology: towards a living data repository for injury prevention. Spinal Cord, 2011, 49:493-501. doi: http://dx.doi.org/10.1038/sc.2010.146 PMID:21102572 106. Biering-Sørensen F et al. The International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi. org/10.1038/sj.sc.3101930 PMID:16955072 107. Cardenas DD et al. Etiology and incidence of re-hospitalization after traumatic spinal cord injury: a multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2004, 85:1757-1763. doi: http://dx.doi.org/10.1016/j.apmr.2004.03.016 PMID:15520970 108. De Vivo M et al. International spinal cord injury core data set. Spinal Cord, 2006, 44:535-540. doi: http://dx.doi.org/10.1038/ sj.sc.3101958 PMID:16955073 109. Kreuger H. Spinal cord injury: progress in care and outcomes in the last 25 years. Vancouver, The Rick Hansen Institute, 2011. 110. Stover SL et al. History, implementation and current status of the National Spinal Cord Injury Database. Archives of Physical Medicine and Rehabilitation, 1999, 80:1365-1371. doi: http://dx.doi.org/10.1016/S0003-9993(99)90246-0 PMID:10569429 111. Bates I et al. Indicators of sustainable capacity building for health research: analysis of four African case studies. Health Research Policy and Systems, 2011, 9:14. doi: http://dx.doi.org/10.1186/1478-4505-9-14 PMID:21443780 112. Tate DG, Boninger ML, Jackson AB. Future directions for spinal cord injury research: recent developments and model systems contributions. Archives of Physical Medicine and Rehabilitation, 2011, 92:509-515. doi: http://dx.doi.org/10.1016/j.apmr.2010.07.243 PMID:21353833 113. Whiteneck G, Gassaway J. SCIRehab: a model for rehabilitation research using comprehensive person, process and outcome data. Disability and Rehabilitation, 2010, 32:1035-1042. doi: http://dx.doi.org/10.3109/09638281003775584 PMID:20392171 114. Whiteneck GG et al. Inpatient and postdischarge rehabilitation services provided in the first year after spinal cord injury: findings from the SCIRehab study. Archives of Physical Medicine and Rehabilitation, 2011, 92:361-368. doi: http://dx.doi.org/10.1016/j. apmr.2010.07.241 PMID:21353820 115. Yazdizadeh B, Majdzadeh R, Salmasian H. Systematic review of methods for evaluating healthcare research economic impact. Health Research Policy and Systems, 2010, 8:6. doi: http://dx.doi.org/10.1186/1478-4505-8-6 PMID:20196839 116. Gertler P et al. Impact evaluation in practice. Washington, DC, The International Bank for Reconstruction and Development/The World Bank, 2011.
123
Prospettive Internazionali sulla lesione del midollo spinale
117. Whiteneck GG et al. Quantifying environmental factors: a measure of physical, attitudinal, service, productivity and policy barriers. Archives of Physical Medicine and Rehabilitation, 2004, 85:1324-1335. doi: http://dx.doi.org/10.1016/j.apmr.2003.09.027 PMID:15295760 118. Craig A et al. The efficacy and benefits of environmental control systems for the severely disabled. Medical Science Monitor, 2005, 11:RA32-RA39. PMID:15614204 119. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:11341137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 120. Field MJ, Jette AM. The future of disability in America. Washington, DC, The National Academies Press, 2007. 121. May-Teerink T. A survey of rehabilitative services and people coping with physical disabilities in Uganda, East Africa. International Journal of Rehabilitation Research, 1999, 22:311-316. doi: http://dx.doi.org/10.1097/00004356-199912000-00008 PMID:10669981 122. Swiss Paraplegic Foundation (http://www.paraplegie.ch/en/pub/gv/become_a_member.cfm, accessed 24 April 2013). 123. ACC. Accident Compensation Corporation web site. Wellington, New Zealand, Accident Compensation Corporation, 2012 (http:// www.acc.co.nz, accessed 17 April 2012). 124. NDIS. National Disability Insurance Scheme web site, Canberra, Australia, NDIS, 2012 (http://www.ndis.gov.au/, accessed 17 April 2012). 125. Dicianno BE et al. RESNA position on the application of tilt, recline, and elevating leg rests for wheelchairs. Assistive Technology, 2009, 21:13-22. doi: http://dx.doi.org/10.1080/10400430902945769 PMID:19719059 126. Crespo LM, Reinkensmeyer DJ. Effect of robotic guidance on motor learning of a timing task. Paper presented at BioRob 2008. Second IEEE, RAS & EMBS International Conference on Biomedical Robotics and Biomechatronics, 19−22 October 2008 (http:// ieeexplore.ieee.org/xpl/mostRecentIssue.jsp?punumber=4753967, accessed 12 April 2012). 127. Atkins MS et al. Mobile arm supports: evidence-based benefits and criteria for use. The Journal of Spinal Cord Medicine, 2008, 31:388-393. PMID:18959356 128. Chin CA. Integrated electromyogram and eye-gaze tracking cursor control system for computer users with motor disabilities. Journal of Rehabilitation Research and Development, 2008, 45:161-174. doi: http://dx.doi.org/10.1682/JRRD.2007.03.0050 PMID:18566935 129. Sesin A et al. Adaptive eye-gaze tracking using neural-network-based user profiles to assist people with motor disability. Journal of Rehabilitation Research and Development, 2008, 45:801-818. doi: http://dx.doi.org/10.1682/ JRRD.2007.05.0075 PMID:19009467 130. Amador MJ, Guest JD. An appraisal of ongoing experimental procedures in human spinal cord injury. Journal of Neurologic Physical Therapy; JNPT, 2005, 29:70-86. PMID:16386164 131. Fehlings MG, Baptiste D. Current status of clinical trials for acute spinal cord injury. Injury, 2005, 36 Suppl 2:B113-B122. doi: http:// dx.doi.org/10.1016/j.injury.2005.06.022 PMID:15993112 132. Baptiste DC, Fehlings M. Update on the treatment of spinal cord injury. Progress in Brain Research, 2007, 161:217-233. doi: http:// dx.doi.org/10.1016/S0079-6123(06)61015-7 PMID:17618980 133. Thuret S, Moon LD, Gage F. Therapeutic interventions after spinal cord injury. Nature Reviews. Neuroscience, 2006, 7:628-643. doi: http://dx.doi.org/10.1038/nrn1955 PMID:16858391 134. Regenberg AC et al. Medicine on the fringe: stem cell-based interventions in advance of evidence. Stem Cells (Dayton, Ohio), 2009, 27:2312-2319. doi: http://dx.doi.org/10.1002/stem.132 PMID:19544406 135. Ryan KA et al. Tracking the rise of stem cell tourism. Regenerative Medicine, 2010, 5:27-33. doi: http://dx.doi.org/10.2217/rme.09.70 PMID:20017692 136. Song P. Biotech pilgrims and the transnational quest for stem cell cures. Medical Anthropology, 2010, 29:384-402. doi: http:// dx.doi.org/10.1080/01459740.2010.501317 PMID:21082484 137. Devereaux M, Loring JF. Growth of an industry: how U.S. scientists and clinicians have enabled stem cell tourism. The American Journal of Bioethics, 2010, 10:45-46. doi: http://dx.doi.org/10.1080/15265161003769005 PMID:20461650 138. Dobkin BH, Curt A, Guest J. Cellular transplants in China: observational study from the largest human experiment in chronic spinal cord injury. Neurorehabilitation and Neural Repair, 2006, 20:5-13. doi: http://dx.doi.org/10.1177/1545968305284675 PMID:16467274 139. Huang H et al. Influence factors for functional improvement after olfactory ensheathing cell transplantation for chronic spinal cord injury. [Chinese Journal of Reparative and Reconstructive Surgery] Zhongguo Xiu Fu Chong Jian Wai Ke Za Zhi, 2006, 20:434438. PMID:16683451 140. Amariglio N et al. Donor-derived brain tumor following neural stem cell transplantation in an ataxia telangiectasia patient. PLoS Medicine, 2009, 6:e1000029. doi: http://dx.doi.org/10.1371/journal.pmed.1000029 PMID:19226183
124
Capitolo 5 Il rafforzamento dei sistemi sanitari
141. Huang H et al. Olfactory ensheathing cells transplantation for central nervous system diseases in 1,255 patients. [Chinese Journal of Reparative and Reconstructive Surgery]Zhongguo Xiu Fu Chong Jian Wai Ke Za Zhi, 2009, 23:14-20. PMID:19192871 142. Cyranoski D. Korean deaths spark inquiry. Nature, 2010, 468:485. doi: http://dx.doi.org/10.1038/468485a PMID:21107396 143. Dolan T. A three-pronged management strategy to stem cell tourism. The American Journal of Bioethics, 2010, 10:43-45. doi: http://dx.doi.org/10.1080/15265161003754056 PMID:20461649 144. Hyun I. Allowing innovative stem cell-based therapies outside of clinical trials: ethical and policy challenges. The Journal of Law, Medicine & Ethics, 2010, 38:277-285. doi: http://dx.doi.org/10.1111/j.1748-720X.2010.00488.x PMID:20579251 145. Lindvall O, Hyun I. Medical innovation versus stem cell tourism. Science, 2009, 324:1664-1665. doi: http://dx.doi.org/10.1126/ science.1171749 PMID:19556497 146. Caplan A, Levine B. Hope, hype and help: ethically assessing the growing market in stem cell therapies. The American Journal of Bioethics, 2010, 10:24-25. doi: http://dx.doi.org/10.1080/15265161.2010.481980 PMID:20461638 147. Fuhrer MJ. Assistive technology outcomes research: challenges met and yet unmet. American Journal of Physical Medicine & Rehabilitation, 2001, 80:528-535. doi: http://dx.doi.org/10.1097/00002060-200107000-00013 PMID:11421522 148. Reid D, Lailberte-Rudman D, Hebert D. Impact of wheeled seated mobility devices on adult users’ and their caregivers’ occupational performance: a critical literature review. Canadian Journal of Occupational Therapy, Revue Canadienne d’Ergothérapie, 2002, 69:261-280. doi: http://dx.doi.org/10.1177/000841740206900503 PMID:12501452
125
Capitolo 6 Atteggiamenti, relazioni ed adattamento
“In qualità di utilizzatori di carrozzine spesso suscitiamo una certa curiosità tra le persone non affette da disabilità motoria, nel senso che molte persone si domandano come mai un corpo dall’aspetto ‘normale’ dovrebbe rimanere seduto in una carrozzina. Presto colgono l’opportunità di iniziare una conversazione: “Spero che migliori presto!” seguito dalla domanda, “È stato un incidente?” Questi osservatori ascoltano la storia della persona in carrozzina, si rendono conto che questa persona dall’aspetto sano effettivamente non può stare in piedi, sentono sincero rammarico e poi si girano e se ne vanno. Mentre vanno via si sentono grati perché non devono sperimentare questa “sofferenza”. Cammineranno più veloce e penseranno: la mia più grande paura nella vita è quella di diventare disabile”. Eppure, quel momento da incubo per lo spettatore potrebbe diventare un fotogramma abituale di una vita felice, ma non così facile, di chi utilizza la carrozzina”. (Bulent, Turchia) “I loro atteggiamenti mi fanno sentire triste perché provengono dai loro miti e dalle loro credenze. E sì, la lesione midollare (LM) mi è capitata casualmente ma solamente l’8% della nostra gente samoana è istruita. Tutti devono lavorare per cui ti considerano “una perdita di tempo” se non puoi fare altro che stare seduto, specialmente alla mia età quando dovrei lavorare sodo per la mia famiglia, ma non posso e pertanto sono inutile. Prendersi cura della propria persona è molto difficile a Samoa. Tua moglie sarà la tua badante principale, ma sei fortunato se a lei si aggiunge anche la presenza della madre. Senza la moglie o la madre dovresti rimanere in ospedale. La famiglia non ti porterà a casa. Non c’è conoscenza al riguardo. Non ci sono attrezzature. Sono fortunato perché mia moglie mi vuole molto bene”. (Pene, Samoa) “Ho subito la lesione midollare a livello T10 quando ero molto giovane per cui usare la carrozzina è diventata una parte naturale della mia vita. Sono cresciuta in una parte rurale degli USA dove mi sentivo a mio agio con me stessa e con la mia identità. Tuttavia, non sono mai stata sicura di poter trovare un partner e spesso mi sentivo scoraggiata perché non frequentavo i ragazzi quanto le mie amiche. Ora mi trovo a vivere un rapporto d’amore stabile e intendiamo sposarci l’anno prossimo. Guardando indietro mi rendo conto che gli unici limiti che mi trovavo ad affrontare erano quelli che io stessa mi creavo a causa di una mancanza di fiducia in me stessa circa il rapporto con i ragazzi e la sessualità. Da donna con disabilità avrei dovuto essere più aperta, franca, onesta e fiduciosa con gli uomini perché c’erano molte domande circa l’andamento del rapporto come ‘Come funzionerà?’ o ‘Possiamo fare sesso?’. Una volta risposto a queste domande le cose sono andate in modo naturale come dovrebbero andare in qualsiasi rapporto!” (Cheri, USA) “Ho ricevuto 25 ore la settimana con un assistente personale per svolgere diverse attività. Ho alcuni professionisti (infermieri) con cui mi trovo bene ed a cui chiedo di accompagnarmi quando c’è un viaggio in vista. Cerco sempre di fare bei programmi con anticipo affinché il viaggio sia gradevole ed il mio assistente possa vivere un’esperienza positiva quando mi accompagna. Sono estremamente contento di questo speciale tipo di ‘assistente personale’”. (Kjell, Norvegia)
6
Atteggiamenti, relazioni ed adattamento Gli atteggiamenti e i comportamenti di familiari, amici, operatori sanitari, vicini ed estranei concorrono sia come barriere che come facilitatori ai fattori ambientali nell’influenzare la vita delle persone affette da lesione midollare (PLM) (1). Al tempo stesso, il grado in cui le PLM possono adattarsi alla loro situazione, che a sua volta è relativo alle loro credenze e percezione di se stesse, può incidere altresì sugli atteggiamenti e sui comportamenti delle altre persone inserite nella loro rete sociale (2). Per molte PLM il rispetto e l’accettazione espressi da familiari, amici, vicini, colleghi e fornitori di servizi – in particolare le reazioni sociali che riducono l’ansia e la paura – costituiscono forze positive potenti che contribuiscono a rendere possibile l’adattamento alla LM (3). L’assistenza ed il supporto forniti da persone non disabili, insieme al supporto tra pari con disabilità, rappresentano un aiuto vitale per molte persone con disabilità. Nella Convenzione sui diritti delle persone con disabilità (CRPD), l’articolo 3 (Principi generali) sottolinea l’importanza del rispetto per la dignità intrinseca, l’autonomia individuale, il rispetto per la differenza e l’accettazione delle persone con disabilità come parte della diversità umana e dell’umanità stessa (4). Tra gli articoli specifici della Convenzione pertinenti alla discussione sugli atteggiamenti e sui rapporti sociali vi sono: ■ Articolo 8 Accrescimento della consapevolezza ■ Articolo 19 Vita indipendente ed inclusione nella società ■ Articolo 23 Rispetto del domicilio e della famiglia ■ Articolo 30 Partecipazione alla vita culturale e ricreativa, al tempo libero ed allo sport Altri articoli, come l’articolo 26, abilitazione e riabilitazione, mettono in rilevo fattori importanti che permettono di promuovere rapporti positivi. Questo Capitolo esamina gli atteggiamenti e i rapporti che strutturano la vita delle PLM e parla dell’inclusione nella comunità generale e degli atteggiamenti dei professionisti sanitari; si prende inoltre in considerazione la fornitura di assistenza e supporto – sia formale istituzionale e a domicilio, che informale gratuita fornita da familiari ed amici e l’assistenza personale a pagamento controllata dai consumatori stessi. In seguito, la sezione sulle relazioni familiari esplora i rapporti con e il supporto di genitori, coniugi e figli. Infine, il 129
Prospettive Internazionali sulla lesione del midollo spinale
Capitolo esamina come le persone si adattano alla LM e costruiscono la propria autostima. In ogni sezione i casi esposti sono seguiti da esempi di interventi e dati relativi a ciò che ha funzionato per migliorare la situazione.
Atteggiamenti Atteggiamenti collettivi Le raffigurazioni culturali e gli atteggiamenti verso la disabilità influiscono su ogni interazione sociale nella vita delle persone con disabilità (5). Fissare lo sguardo, ignorare, evitarle o avere reazioni di evitamento, crearsi stereotipi e marginalizzare sono azioni che manifestano atteggiamenti negativi (6–8). Le barriere attitudinali possono essere altrettanto inibitorie quanto le barriere fisiche (9). Molte persone non disabili non conoscono la realtà della vita delle persone con disabilità e fondano i loro atteggiamenti su stereotipi ed immagini negative (10, 11). Tipicamente la disabilità è associata con la dipendenza e la passività, sebbene in alcune culture essa è associata con la stregoneria, il peccato o il karma negativo (12). Anche quando le persone senza disabilità non incorrono in questi pregiudizi la disabilità è comunque considerata incompatibile con una buona qualità di vita: ad esempio, il pubblico generico spesso considera la tetraplegia una condizione peggiore della morte (13, 14). Uno studio keniota su famiglie con figli affetti da spina bifida ha rivelato che solamente 6 delle 40 famiglie nello studio ha trovato la comunità molto utile; sette di esse sono state respinte, mentre nove famiglie si sentivano maledette a causa della nascita di un bambino con disabilità (15). In Bangladesh, anche gli stessi familiari presentano atteggiamenti negativi e basse aspettative per i loro parenti con disabilità (16). Gli atteggiamenti degli altri possono anche costituire una forza positiva. Un’indagine tra i facilitatori e le barriere per persone con disabilità motorie negli USA ha evidenziato come gli 130
atteggiamenti di familiari, amici e assistenti personali abbiano avuto una forte influenza positiva nel recupero, mentre gli atteggiamenti di medici e terapisti sono stati considerati barriere al ricevimento del’assistenza sanitaria (17). Tuttavia, gli atteggiamenti possono essere diversi in accordo alla gravità della lesione: uno studio canadese ha evidenziato che, mentre i due terzi delle PLM in ottima salute considerano gli atteggiamenti di familiari e amici come facilitatori della loro partecipazione sociale, il 25% di coloro in cattiva salute considerava gli atteggiamenti di familiari e amici come ostacoli alla loro partecipazione sociale (18). La gente può non sapere che cosa sia un atteggiamento positivo nei confronti delle PLM (19). Per esempio, la gente può supporre che le PLM desiderino un trattamento speciale e si comportano di conseguenza. Alternativamente, la gente può pensare all’indipendenza in termini di quali azioni le PLM possono compiere invece di pensare all’indipendenza che viene dal controllo sulla propria vita. I sondaggi tra le PLM trovano che esse percepiscono la loro vita in modo più positivo dei professionisti sanitari e del pubblico in genere (19–21).
Affrontando le barriere
Il contatto con le persone con disabilità migliora gli atteggiamenti (22). In genere, più le PLM frequentano le scuole tradizionali, viaggiano con mezzi di trasporto pubblico, vivono in quartieri comuni e lavorano in posti tradizionali, più i bambini e gli adulti senza disabilità imparano a comprenderle e rispettarle come parte della diversità della società (23). Quando le case private, i bar, i ristoranti e i luoghi della cultura sono resi più accessibili diventa possibile per le persone con disabilità frequentare i ritrovi sociali ed essere incluse nelle scelte tradizionali di svaghi e tutto ciò tende a migliorare gli atteggiamenti. Interventi mirati – come la formazione all’uguaglianza ed alla conoscenza della disabilità per i fornitori di servizi – possono sfidare gli atteggiamenti negativi ed aumentare la comprensione (24,
Capitolo 6 Atteggiamenti, relazioni ed adattamento
25). Interventi educazionali nelle aule scolastiche – come visite da parte di persone disabili prese ad esempio o rappresentanti dei disabili – possono aumentare la comprensione e la consapevolezza nei bambini (26–28). Anche la presenza nei mezzi di comunicazione (media) di svariati esempi positivi di persone con disabilità, possono incidere sugli atteggiamenti (29) e gli sforzi individuali per accrescere la consapevolezza possono trarre beneficio dalla copertura dei media di avvenimenti importanti come è stato dimostrato dall’esempio di Haiti nel Riquadro 6.1. Le azioni da parte dei governi per promuovere la conoscenza della CRPD tenderanno a contrastare gli atteggiamenti negativi circa la disabilità e promuovere l’accettazione.
reddito. Sappiamo meno circa gli atteggiamenti degli operatori sanitari nei paesi a basso e medio reddito (38), anche se l’analisi del World Health Survey ha riscontrato che rispetto alle persone non disabili, era due volte più probabile che le persone con disabilità trovassero inadeguate le competenze degli operatori sanitari e le attrezzature per rispondere ai loro bisogni; in tale studio era inoltre tre volte più probabile che venissero negate le cure, e quattro volte più probabile che fossero trattate male (39).
Affrontando le barriere
Atteggiamenti degli operatori sanitari A volte gli operatori sanitari possono avere pregiudizi nei confronti delle persone con disabilità o non trattarle con rispetto (34). Ad esempio, uno studio ha dimostrato che l’8,2% dei medici generici nel sudovest della Francia si sente a disagio nei confronti delle persone con disabilità fisiche e che tali atteggiamenti sono associati con la minore esperienza e la mancanza di formazione medica relativa alla disabilità e un tempo insufficiente di consultazione (35). Uno studio australiano ha rivelato che gli atteggiamenti degli studenti di terapia occupazionale non siano migliori di quelli degli studenti di economia (23). Un altro studio ha rilevato che gli infermieri che lavorano nell’assistenza in fase acuta di una LM hanno, verso le persone anziane con LM, atteggiamenti più negativi di quelli degli infermieri che lavorano nella riabilitazione LM e con le PLM (36), forse perché i primi vedono sempre individui in uno stato critico con forte dipendenza. Questo fenomeno può anche spiegare gli atteggiamenti negativi riscontrati tra gli operatori di cure di emergenza (37) e tra alcuni operatori della riabilitazione (19). Questi studi sono stati svolti principalmente in paesi ad alto
Le PLM considerano gli operatori sanitari con atteggiamenti di supporto come centrali per il loro recupero, benessere, autonomia ed aspettative (49). Ad esempio, è stato rilevato che gli atteggiamenti positivi dei medici possono avere più influenza sugli atteggiamenti dei pazienti verso la loro disabilità che l’istruzione dei pazienti circa le opzioni terapeutiche (41). Perciò è importante aiutare gli operatori a sviluppare atteggiamenti positivi e una maggiore comprensione. Tra gli sforzi per migliorare gli atteggiamenti di operatori sanitari vi sono misure come lezioni e corsi brevi sui bisogni sanitari e sui diritti umani delle persone con disabilità durante il corso di laurea insieme al contatto con persone con disabilità o con gruppi di persone con disabilità (23, 42). A lungo termine i gruppi di lavoro e le attività partecipative possono avere un maggiore impatto delle lezioni (25). La formazione in servizio ed altre forme di educazione continuative possono contribuire ad influire sulla mentalità di medici, infermieri ed altri operatori prima dell’ottenimento del titolo di studio(43). Incoraggiare la formazione e il reclutamento di operatori sanitari con disabilità può sfidare lo stereotipo prevalente che le persone con disabilità sono sempre i pazienti (44).
131
Prospettive Internazionali sulla lesione del midollo spinale
Riquadro 6.1. Atteggiamenti in evoluzione in Haiti Mentre la predisposizione di cure mediche necessarie per assistere inizialmente i pazienti affetti da LM dopo il terremoto del 10 gennaio 2010 ha costituito un compito enorme, forse la sfida più grande per la riabilitazione in Haiti è stata quella della reintegrazione. In un paese in cui le persone con disabilità sono spesso chiamate cocobai – nella lingua creola haitiana significa “senza valore” – i centri dedicati alle persone con LM hanno dovuto affrontare sfide significative per trasformare gli atteggiamenti e per elaborare programmi di reintegrazione sociale di successo. Come descritto in uno studio dell’ICF (Classificazione internazionale di funzionamento, disabilità e salute) svolto al Haiti Hospital Appeal (HHA) dopo il terremoto, quasi tutti i pazienti hanno incontrato gravi problemi di mobilità con le attrezzature ed i mezzi di trasporto. L’ambiente ha avuto un impatto importante su queste limitazioni perché l’area intorno all’ospedale e i servizi di trasporto esistenti non erano accessibili alle carrozzine (30). Tuttavia, a parte la ricostruzione delle infrastrutture, sulla quale si è centrata la maggior parte delle raccomandazioni, forse l’ostacolo più grande per i paesi come Haiti è lo stigma culturale associato con la disabilità. Delle 62 famiglie haitiane intervistate, 45 hanno detto di affrontare abusi o discriminazione a causa della disabilità del figlio, di cui 39 tutti i giorni (31). Le credenze culturali e religiose contribuiscono alla discriminazione perché in Haiti la disabilità è spesso considerata di origine sopranaturale. Perfino il fallimento del raccolto può essere attribuito a bambini con disabilità (32). Mentre il cambiamento infrastrutturale nazionale è generalmente troppo costoso da mettere in atto per le ONG, sono raggiungibili invece le iniziative economicamente convenienti di sostegno per ottenere un cambiamento più rapido nel breve termine. L’HHA ha lanciato una campagna che utilizza lo sport per avanzare l’inclusione della disabilità. La popolarità universale dello sport e i suoi benefici per lo sviluppo fisico, sociale ed economico lo rende uno strumento ideale per promuovere l’inclusione e il benessere delle persone con disabilità (33). La strategia dell’HHA si concentra sullo sport a livello popolare ed anche sullo sviluppo professionale Paralimpico. Leon G. ha perso la moglie e otto dei suoi figli nel terremoto del 2010 ed ha anche subito una lesione midollare. Eppure, la sua determinazione nel praticare sport per superare la disabilità ha suscitato molta attenzione dando speranza, coraggio ed un ideale a molte persone a Cap-Haitien (la seconda città più grande di Haiti) aiutandole ad eliminare lo stigma sociale della disabilità, secondo Istvann Papp (Capo dell’Equipe delle Nazioni Unite per ridurre la violenza nel Nord Haiti). Oltre all’opportunità di accrescere la sensibilità degli spettatori non disabili quando Leon gira intorno al suo distretto con la sua handbike, il suo successo come il primo handbiker in una competizione ai Giochi Parpan nel 2011 ha posto una sfida perfetta allo stigma della disabilità. Ci sono stati servizi speciali alla televisione haitiana ed internazionale con Leon, il quale ha parlato in occasione di eventi pubblici e ha sostenuto l’iniziativa di far trasmettere dalla televisione haitiana per la prima volta i Giochi Paralimpici del 2012. La sua storia dimostra come lo sport possa trascendere le barriere linguistiche, culturali e sociali, fornire una piattaforma eccellente per le strategie di inclusione e adattamento in un modo che sarebbe difficile per le forme più tradizionali di reintegrazione (33). Mentre il cambiamento delle infrastrutture è indubbiamente una necessità critica, prima di poter intervenire in modo appropriato la nazione deve innanzitutto valutare, capire e prendersi cura dei bisogni delle persone con disabilità. Una volta che le persone con disabilità sono considerate uguali sarà più facile per loro raggiungere i loro diritti umani. L’esperienza di Leon è solamente un esempio di come le storie individuali di successo personale nello sport possono migliorare in modo significativo le relazioni e gli atteggiamenti.
Assistenza e supporto Il tema dell’assistenza e del supporto fa riferimento al personale non medico che aiuta le persone con disabilità a svolgere le attività della vita quotidiana. I bisogni possono verificarsi a 132
casa, a scuola, nel posto di lavoro, mentre si viaggia da un posto all’altro o nelle attività sociali o comunitarie. In genere, le barriere ambientali aumentano il bisogno di assistenza; la migliore accessibilità e la disponibilità di più ausili generalmente diminuiscono il bisogno di assistenza.
Capitolo 6 Atteggiamenti, relazioni ed adattamento
Le persone che non possono ricevere assistenza, particolarmente in situazioni inaccessibili, possono vedersi costrette a rimanere a casa o perfino in una stanza della casa. In genere, le persone con bisogni più complessi – come nella tetraplegia – possono avere bisogno di più assistenza di quelle con paraplegia. Come dimostra il World report on disability (39), la maggior parte dei bisogni per assistenza e supporto di tutte le persone con disabilità è fornita da familiari ed amici, noti anche come assistenti informali non pagati. Negli ambienti ad alto reddito, o a volte per persone con alti redditi che vivono in ambienti con minori redditi, il supporto può essere pagato da loro direttamente. Questo può essere fornito dallo Stato, da un’organizzazione di volontari o a pagamento. Nella sezione successiva dedicata agli assistenti personali viene descritto questo fenomeno nuovo che potenzialmente conferisce capacità aggiuntive.
Assistenza informale Gli studi sugli assistenti informali, tipicamente familiari, esaminano il tipo di lavori compiuti, gli effetti sulla salute della famiglia e l’effetto sulle relazioni (45, 46). La maggioranza degli adulti con LM sono maschi e i loro assistenti sono più probabilmente femmine. Ad esempio, uno studio brasiliano ha riscontrato che più del 80% degli assistenti di persone con paraplegia traumatica è femmina, generalmente le mogli o a volte sorelle, e più della metà degli assistenti erano gli unici assistenti (47). Un altro gruppo significativo di assistenti informali sono i genitori di bambini e giovani con spina bifida o LM acquisita. Ancora una volta, sono le donne ad eseguire la maggior parte dei compiti assistenziali. . Familiari ed amici possono sentirsi impreparati o inadeguati a fornire la necessaria assistenza. Un’altra ricerca ha rilevato problemi di isolamento e mancanza di supporto per gli assistenti (48). Secondo il livello di bisogno, dare supporto ad una PLM può essere fisicamente ed emotivamente estenuante ed avere ripercussioni
psicologiche che possono incidere sull’assistenza fornita. Ad esempio, i coniugi che fungono da assistenti possono avere più sintomi di stress e depressione dei loro partner con LM (46). Uno studio realizzato nei Paesi Bassi utilizzando l’Indice Barthel ha rilevato che il peso percepito associato al supporto dei partner con LM era alto per quasi il 24,8% dei partner di persone con gravi disabilità rispetto al 3,9% di partner di persone con disabilità minori e ha concluso che la prevenzione del burn-out degli assistenti dovrebbe essere parte dell’assistenza delle PLM (49). Uno studio brasiliano ha riscontrato che gli assistenti di persone con paraplegia avevano bassi punteggi sulla SF36, che misura la qualità della vita, in particolare per gli aspetti legati al dolore fisico e vitalità (47). Uno studio svolto nelle Fiji tra assistenti di PLM ha rilevato un carico significativo ed un disagio psicologico gravante su di loro (50). A Fiji, assistenza e supporto a pagamento sono quasi inesistenti e la famiglia estesa diventa la fonte principale di assistenza per le PLM. Un piccolo studio sulla qualità di vita di famiglie con spina bifida condotto in Kenya ha rilevato un impatto pervasivo sociale, finanziario, emotivo e spirituale sui genitori che si aggrava quando i bambini soffrono anche di incontinenza urinaria (15).
Affrontando le barriere
Il supporto sociale è un fattore chiave nella vita di adulti con LM al momento del ritorno al domicilio e nella comunità dopo il periodo iniziale di riabilitazione. Occorrono strategie e programmi per fornire reti di assistenza personale informale per le PLM prima che lascino le strutture riabilitative affinché possano vivere nella comunità (51). Durante il ricovero ospedaliero non solo i pazienti ma anche le loro famiglie dovrebbero essere coinvolte nelle attività educative (52). Uno studio canadese rileva la necessità di avere informazioni sulle questioni mediche, psicosociali ed emotive sulla comunità/integrazione, sull’occupazione, sulle questioni finanziarie e sulle attività della vita quotidiana/cura di sé . L’adattamento 133
Prospettive Internazionali sulla lesione del midollo spinale
alla LM durante i primi tre anni dopo l’insorgenza migliora se il supporto sociale ed educativo è fornito anche dai familiari e non soltanto alla PLM (53). Una prova controllata e randomizzata condotta negli USA ha mostrato che gli interventi psicosociali indirizzati all’assistente e alla PLM erano i più efficaci nella riduzione dei sintomi clinici e dell’esclusione sociale degli assistenti (54). Gli interventi di supporto familiare possono comprendere sessioni di formazione per risolvere problemi faccia a faccia, con supporto via telefono e video conferenze e materiali educativi. Questi interventi hanno dimostrato di migliorare il funzionamento e la risoluzione dei problemi e, in alcuni casi, di ridurre la depressione dell’assistente (55, 56). Durante la riabilitazione si sono dimostrati efficaci i servizi di supporto per le famiglie di bambini con lesione traumatica. Ciò comprende il coordinamento dell’assistenza alla dimissione, i protocolli educativi, la messa in atto di gruppi e programmi di supporto gestiti da pari e programmi di sostegno tra pari a favore delle famiglie (57). Mancano interventi e ricerche sulle famiglie con bambini con spina bifida (58). L’assistenza di sollievo è una soluzione comune nei paesi ad alto reddito per i membri della famiglia che hanno il peso dell’assistenza di bambini o adulti con disabilità e necessitano di una pausa per ridurre il loro disagio psicologico (59). Negli ambienti con meno risorse, i programmi di riabilitazione comunitaria (CBR) possono costituire una fonte importante di supporto per famiglie con bambini disabili (60, 61). Le organizzazioni di volontari sono un’altra fonte di aiuto. Alcuni genitori in Bangladesh hanno riportato benefici quando si incontrano con altri genitori che frequentano il centro riabilitativo (16). In uno studio keniota di famiglie che hanno bambini con spina bifida, tre quarti delle famiglie ha trovato qualche persona amichevole nelle proprie chiese, e la metà delle famiglie conosceva altre famiglie con bambini disabili, suggerendo quali fonti di aiuto reciproco e supporto erano disponibili(15). Tuttavia,
la copertura geografica di progetti ONG e CBR rimane disomogenea.
Assistenza formale L’assistenza formale ed i servizi di supporto coprono diverse aree tra cui i servizi di supporto residenziale, il supporto comunitario, l’assistenza di sollievo ed altri. I servizi formali possono essere forniti tramite i settori pubblici o privati per profitto e privati no profit o una combinazione di essi (39). L’assistenza formale può beneficiare sia le persone con disabilità che gli assistenti informali (62, 63). Per i paesi a basso reddito, però, le risorse possono non essere disponibili per questo tipo di servizio o il costo al consumatore sarebbe troppo alto (64). L’uso delle residenze, che ha costituito un approccio tradizionale all’assistenza formale nei paesi ad alto reddito, indebolisce la scelta e la libertà delle persone con disabilità di condurre una vita normale.
Affrontando le barriere
E’ stato dimostrato che l’assistenza informale e il supporto sono più efficaci quando sono uniti a diversi sistemi e servizi di assistenza formale. Ad esempio, l’assistenza di sollievo permette alle famiglie di prendere una pausa dallo stress associato con l’assistenza informale di bambini con spina bifida o LM (62). I paesi ad alto reddito hanno visto negli ultimi decenni uno spostamento dell’enfasi dall’assistenza residenziale (65, 66) a quella comunitaria. Gli operatori del supporto comunitario permettono alle PLM di tutte le età di rimanere nella propria casa anziché entrare in un’istituzione residenziale. Questa soluzione è considerata preferibile dalla maggior parte degli individui ed è richiesta dall’articolo 19 della CPRD. Il supporto comunitario può aiutare per la cura di sé, la mobilità e la partecipazione ed è stata associata con un miglioramento della salute e del funzionamento nelle PLM (67, 68). L’assistenza e il supporto a casa sono importanti per persone con poca o nessuna mobilità. La mancanza di mobilità è
134
Capitolo 6 Atteggiamenti, relazioni ed adattamento
associata con tassi più alti di complicanze mediche e rileva la necessità per gli operatori di ricevere una formazione formale nei lavori di supporto che riguardano la salute (13, 69). Quando l’assistenza formale viene attuata in modo corretto è stato dimostrato che è, in un contesto comunitario, non soltanto più conveniente economicamente (70, 71), ma può anche migliorare la gestione della vescica neurologica, ridurre il rischio di complicanze secondarie associate con LM (67) e in questo modo migliorare la qualità di vita. La collaborazione con le ONG, come succede in Sud Africa ad esempio, costituisce un modo per rendere disponibile l’assistenza formale per le persone nei paesi a basso e medio reddito (72).
Assistenti personali Nei paesi ad alto reddito, per coloro che non hanno un supporto familiare o preferiscono pagare per l’assistenza per alleviare lo stress degli assistenti informali o favoriscono un maggiore controllo e flessibilità, il modello dell’assistente personale è largamente considerato una buona soluzione. In questo contesto l’assistenza personale fa riferimento all’aiuto umano fornito a persone, sotto il loro controllo, affinché possano compiere le attività di base necessarie per vivere nella comunità (ad es. vestirsi, farsi il bagno, usare il gabinetto, fare il bucato, svolgere le faccende domestiche e fare la spesa) (73). L’assistenza formale e il supporto forniti da agenzie possono comportare regole severe circa il numero di ore di lavoro e una serie di lavori che gli operatori non possono compiere, il che può limitare la possibilità dei consumatori di pattuire servizi al di fuori di quelli autorizzati specificamente dall’agenzia (74). Invece, sembra che i programmi di assistenza personale guidati da consumatori producano un maggiore benessere, meno ricoveri in ospedale e in genere una maggiore soddisfazione dei consumatori (51, 74–75). Gli assistenti personali permettono alle PLM di partecipare di più alla vita comunitaria (77), alla scuola, al volontariato, all’occupazione attiva
e all’impegno nelle attività sociali e ricreative (51). La disponibilità dell’assistente personale può anche incidere sulla quantità dell’ esercizio fisico che una persona fa. Uno studio negli USA ha trovato che meno della metà degli utenti di carrozzine manuali rispondeva alle raccomandazioni di compiere 150 minuti di attività fisica moderata o vigorosa la settimana (78). Kehn e Kroll (79) hanno intervistato sia le PLM che svolgevano attività fisica e sia quelle che non svolgevano e hanno individuato nella presenza di un assistente personale di aiuto con le macchine e le attrezzature della palestra il motivo facilitatore principale per poter svolgere attività fisica. Le barriere all’estensione del modello di assistenza personale sono rappresentate dalla mancanza di fondi (80), da procedure inadeguate per la valutazione e dal bisogno di formazione sia degli utenti dell’assistenza personale che degli assistenti personali stessi. L’assunzione o la gestione di un assistente personale esige che la persona con disabilità abbia le competenze necessarie per gestire i conti e svolgere i compiti del datore di lavoro, il che può non essere possibile o desiderabile per tutti (81).
Affrontando le barriere
Ad eccezione delle persone con accesso a risorse private, la fornitura di servizi di assistenza personale dipende normalmente dal sistema sanitario e sociale del paese. Tuttavia, un esame sistematico dei dati dimostra che l’approccio dell’assistenza personale può essere conveniente economicamente nei paesi ad alto reddito, particolarmente quando è paragonato al costo dell’assistenza istituzionale per persone con un altro grado di dipendenza (63). In Svezia, ad esempio, un programma di assistenza personale per persone con gravi disabilità rende possibile, dal punto di vista finanziario, assumere un assistente personale direttamente o tramite un fornitore ed in questo modo ricevere supporto adattato all’individuo ed ottimizzare l’influenza della persona su come il supporto viene organizzato (82). La maggioranza delle PLM nei paesi a basso e medio 135
Prospettive Internazionali sulla lesione del midollo spinale
reddito non può permettersi un assistente personale ed è improbabile che ricevano supporto dallo Stato. Tuttavia, l’assistenza informale e il supporto possono comunque essere forniti in modi che riflettano i diritti umani di responsabilizzazione e di rispetto anziché favorire la dipendenza (83, 84). La fornitura di assistenza personale dovrebbe iniziare con una valutazione dei bisogni. Ad esempio, in Nuova Zelanda, la Accident Compensation Corporation (ACC) National Serious Injury Service [Società risarcimento danni e infortuni Servizio nazionale infortuni gravi], mira ad incoraggiare la vita indipendente e un ritorno all’occupazione e a questo scopo nomina un gestore del caso per coordinare i requisiti comunitari della persona (85). Normalmente la valutazione del numero di ore di assistenza necessarie è fatta da un terapista occupazionale indipendente pagato dall’ACC il quale, seguendo le linee guida standardizzate, valuta il residuo funzionale presente nella PLM e i suoi bisogni nel corso di una giornata tipo. Il supporto da parte di organizzazioni di persone disabili (DPO) ed altre organizzazioni intermediarie può essere cruciale per conferire la capacità alle persone con disabilità di reclutare e gestire i propri assistenti nonché di svolgere il ruolo di datore di lavoro (86). In genere i consumatori stessi preferiscono addestrare i propri assistenti o a volte far addestrare i successivi assistenti da quelli attuali. Ci possono essere bisogni specifici di addestramento riguardo le questioni come l’uso del respiratore, la capacità di sollevamento e le prese ed altri bisogni sanitari, ad esempio, il monitoraggio della pelle, della pressione del sangue, delle infezioni respiratorie e del tratto urinario. La formazione nell’assistenza personale accresce le conoscenze sia del consumatore che dell’assistente personale (87) e può aiutare a ridurre l’insorgere di patologie secondarie che contribuiscono alla morbilità e alla mortalità come pure all’aumento dei costi sanitari (88).
Relazioni familiari L’effetto delle mansioni assistenziali è uno dei fattori che possono rendere le relazioni personali più difficili. Il discorso precedente si concentrava sulla fornitura di servizi per dare supporto a bambini ed adulti. L’aspetto emotivo della famiglia, però, è altrettanto importante per le PLM. E’ stato dimostrato che la disponibilità di supporto sociale – in particolare il supporto emotivo e l’aiuto con la risoluzione dei problemi – è importante per la soddisfazione di vita delle PLM nella prima fase della lesione (89). Sentimenti di dignità, orgoglio, fiducia, speranza e gioia nelle interazioni sociali danno alle PLM una solida base verso una vita di successo (37, 90). Questi atteggiamenti positivi sono stati collegati alla quantità e tipologia di supporto di familiari ed amici che possono essere molto importanti nel recupero e nell’assunzione di nuovi ruoli nella vita, anche se esiste il rischio di aiutare troppo (91), particolarmente per i bambini con LM. Mentre il supporto sociale è importante, ci sono prove che il fatto di avere compagni preoccupati del dolore renda in realtà più difficile per le PLM far fronte al dolore stesso (92). Alcuni studi hanno trovato che l’adattamento alla disabilità o ad una grave malattia cronica porta ad un maggiore benessere spirituale (93, 94). Numerosi studi hanno dimostrato la forte associazione tra spiritualità e qualità di vita tra le PLM (95, 96) e il coinvolgimento con la religione può dare un supporto sociale (97, 98). Le PLM non dovrebbero essere considerate semplicemente destinatari passivi di supporto ma agenti attivi ed autonomi che possono dar forma alle loro relazioni ed al loro ambiente utilizzando i loro “strumenti” psicologici – ovvero la socialità, la capacità di sopportare, le forze e le risorse. Ad esempio, uno studio iraniano ha trovato che la fiducia in sé, le credenze religiose, le reti sociali e una mentalità positiva erano facilitatori della sopportazione (99). Le PLM non ricevono solamente ma possono anche dare supporto e ciò per le PLM può essere più utile che riceverlo (68).
136
Capitolo 6 Atteggiamenti, relazioni ed adattamento
I partner La LM può avere un effetto negativo sulle relazioni e molti studi rilevano un rischio più alto di divorzio dopo la lesione (100–105). Tuttavia, questo può essere un effetto a breve termine. Uno studio ha trovato che più del 80,7% delle persone coniugate erano ancora sposate cinque anni dopo la lesione rispetto al tasso del 88,8% per la popolazione generale (106). Un altro studio non ha trovato nessuna differenza nei tassi di divorzio tra le PLM e la popolazione generale (107). Un indizio di questi risultati divergenti viene dalla ricerca svolta a Taiwan, Cina, la quale ha trovato che la LM traumatica o porta alla capacità della famiglia di essere resiliente o alla sua disaggregazione (108). Si sono verificate perfino influenze positive sulle relazioni grazie al tempo maggiore passato insieme (109). Eppure, i risultati di questi studi sono difficili da paragonare perché il periodo di tempo dopo il trauma varia per i divorzi e le separazioni, come varia la definizione del matrimonio (in alcuni studi le persone che convivono senza essere sposate a volte sono incluse ed altre volte no) (110). L’interpretazione dei risultati variabili degli studi è resa ancora più difficile a causa delle differenze culturali, dei cambiamenti della vita familiare nella società in genere e le diverse metodologie utilizzate. La sessualità è una dimensione importante delle relazioni e spesso viene influenzata in modo negativo dalla LM. Ad esempio, alcuni studi nel Regno Uniti e nei Paesi Bassi hanno trovato che spesso la soddisfazione sessuale era valutata molto bassa da un campione di PLM a 12–18 mesi dopo la dimissione (111, 112). Gli studi di uomini con LM con partner hanno collegato la soddisfazione sessuale con fattori come la soddisfazione del partner e la qualità della relazione più che con fattori biologici come la funzione erettile (113, 114), anche se per alcune persone le preoccupazioni relative all’intestino e all’incontinenza della vescica costituivano deterrenti all’attività sessuale (115). Studi in Grecia, India e Cina hanno trovato
che stigmi ed altre credenze negative costituivano l’ostacolo maggiore alla sessualità e al matrimonio per le PLM (116–118). Il vedersi con l’altro sesso era classificato come uno degli aspetti più difficili della transizione per adulti con LM insorta in età pediatrica (119). La sessualità non è sempre un problema: in uno studio svedese l’84% dei partner di PLM considerava le loro relazioni soddisfacenti e il 45% pensava che la loro vita sessuale attuale fosse altrettanto buona o meglio di prima della lesione. I sentimenti di vicinanza emotiva, una varietà di attività sessuali e le preoccupazioni reciproche erano per i partner più importanti degli aspetti fisiologici (120). Uno studio di 545 donne scandinave con LM ha rilevato che l’80% ha fatto sesso dopo la lesione. La metà delle donne con LM aveva una relazione e l’85% considerava la relazione molto o abbastanza buona. Tuttavia, i livelli di attività, desiderio, eccitamento e soddisfazione erano più bassi nelle donne con LM che nei gruppi di controllo (121).
Affrontando le barriere
Il supporto per le relazioni intime è molto importante per promuovere il benessere delle PLM. Una relazione intima con un partner ha un effetto positivo sulla qualità di vita (103) e il benessere (122). Alcuni studi hanno dimostrato che lo stato civile costituisce un forte predittore di risultati variabili della vita indipendente (100, 107, 123, 124). Un buon adattamento sessuale dopo LM è associato in modo positivo con il migliore funzionamento fisico, il reddito più alto, più partecipazione al lavoro e alla comunità e un morale più alto (125). Tutti i componenti dell’equipe riabilitativa hanno il ruolo e la responsabilità di affrontare le questioni della sessualità con le PLM. Nello studio scandinavo menzionato prima il 61% delle donne non ha ricevuto nessuna informazione circa la sessualità dopo la LM. Le partecipanti volevano informazioni e supporto non subito dopo la lesione ma quando si presentava la necessità (121). Anche le persone giovani con disabilità 137
Prospettive Internazionali sulla lesione del midollo spinale
dovrebbero avere accesso all’educazione sessuale appropriata (126).Si sono dimostrati efficaci i programmi che migliorano le competenze in campo sessuale all’interno delle equipe multidisciplinari e con le discipline individuali della riabilitazione (127, 128). Le PLM apprezzano in particolare l’assistenza di pari in materia di sessualità (129). Il periodo chiave in cui gli interventi di salute sessuale sono importanti è quello tra la riabilitazione in ospedale e sei mesi dopo la dimissione (130). L’assistenza per le relazioni si è dimostrata efficace quando supporta le coppie in cui un partner ha LM perché può promuovere la reciprocità e migliorare le capacità comunicative. Alcuni approcci utili sottolineano lo sviluppo di nuove attività che sono gradevoli per entrambi (131, 132). L’atteggiamento di condividere le responsabilità anziché fornire assistenza è stato indicato dalle mogli di uomini con LM come motivo di un matrimonio riuscito (124). Per coloro le cui relazioni si disgregano dopo l’insorgere di LM ci sono dati speranzosi per formare nuove relazioni. Le persone che si sposano dopo la lesione sono più soddisfatte con la loro situazione, le loro relazioni e la propria salute e hanno avuto miglioramenti nella loro vita sessuale (113 133). Ciò può essere dovuto in parte al fatto che questo sottogruppo di PLM era già in partenza più attivo, inserito meglio e contento, ma anche perché il matrimonio migliora ulteriormente la loro qualità di vita (133).
Rapporti con genitori e fratelli La LM in una persona giovane può essere traumatica per tutta la famiglia. L’esame dei dati rivela che dal 12 al 13% dei bambini con spina bifida ha livelli clinici di “disfunzione familiare” (134) e che i problemi sono esacerbati quando le famiglie provengono da ambienti socioeconomici più bassi. Uno studio nordamericano ha trovato che il 25% dei pazienti pediatrici, il 41% delle madri e il 35,6% dei padri hanno un disturbo da stress post-traumatico (PTSD) (135). Tuttavia, altri dati suggeriscono che spesso le famiglie 138
dimostrano resilienza e che far fronte alla spina bifida può perfino rafforzare il matrimonio dei genitori (134). I dati rilevano effetti sia positivi che negativi sui fratelli di bambini con spina bifida – ad esempio, l’ansietà e la preoccupazione per la salute e il benessere sociale del fratello con disabilità, ma anche la maggiore empatia per lui e l’apprezzamento maggiore delle proprie capacità fisiche (134). Esistono alcuni dati circa l’ansietà e la depressione dei fratelli di bambini con disabilità, ma questi esiti non sono assolutamente inevitabili (136) e dipendono dal successo con cui la famiglia fa fronte alla situazione (137). Il bambino con disabilità dovrebbe essere trattato come parte della famiglia nello stesso modo in cui vengono trattati gli altri bambini. Gli uomini e le donne con LM possono avere figli (138). Uno studio scandinavo ha verificato che il 18% delle donne con LM ha avuto figli dopo la lesione (121) ed i dati non dimostrano differenze significative nella genitorialità di madri con LM e quelle senza disabilità, né conseguenze per i bambini cresciuti da madri con LM rispetto a quelle senza disabilità (139, 140). Dati simili esistono per i figli di padri con LM (141), tuttavia, può essere necessario ridefinire i ruoli dei genitori come conseguenza della disabilità (142). Normalmente i figli sono a proprio agio con la disabilità del genitore e si pensa che la chiave dell’accettazione sia la discussione aperta (143). Vi sono rischi quando ci si aspetta che i figli assumano ruoli non adatti alla loro età di assistenti per i genitori o i fratelli con LM (144).
Affrontando le barriere
Gli operatori sanitari dovrebbero individuare le famiglie di bambini con LM che hanno bisogno di supporto psicosociale (134). Le reti sociali sono molto importanti per le persone con disabilità (145) e per le famiglie con figli disabili. Uno studio svedese di persone che hanno subito la lesione midollare in adolescenza ha trovato che i genitori e i pari condizione costituiscono una rete cruciale. I genitori promuovevano interazioni
Capitolo 6 Atteggiamenti, relazioni ed adattamento
con gli operatori sanitari e facevano da sostenitori aiutando a far fronte al dolore, alla frustrazione e alla rabbia, mentre i pari erano importanti nella promozione di attività e nello sviluppo dell’identità. Gli operatori sanitari dovrebbero utilizzare in modo efficace le reti sociali dei pazienti stessi (146). La formazione dei genitori può incidere sulle percezioni ed aiutarli a fissare obiettivi realistici per i loro figli (15). Uno studio keniota sulla qualità della vita di persone con spina bifida ha concluso che la formazione della famiglia, dell’assistente e della comunità riguardo la patologia contribuirebbe a migliorare gli esiti dello sviluppo fisico, psicologico e comunicativo (147). La transizione all’età adulta è una questione importante per bambini con spina bifida (134, 148) ed è stato oggetto di un lavoro notevole nel Nord America (149) fondato su un modello di studio del corso della vita che traccia gli stadi di sviluppo e i fattori che hanno maggiormente influenzato il successo in età adulta (150). I genitori potrebbero avere bisogno di formazione per promuovere l’indipendenza dei propri figli affinché questi possano partecipare poi all’istruzione dopo la scuola, alla vita indipendente ed all’occupazione quando è possibile (148). I gruppi sociali possono aiutare attraverso le reti ricreative e sociali ed i giovani con spina bifida vanno incoraggiati ad essere indipendenti (151), a svolgere le faccende domestiche, a usare i mezzi di trasporto pubblici (dove sono accessibili e disponibili) e a partecipare alle attività comunitarie (152). L’educazione sessuale appropriata è molto importante per aiutare i giovani con LM nella transizione all’età adulta (126). Riguardo ai bambini non disabili, gli assistenti sociali ed altre persone dovrebbero aiutare i fratelli di bambini con spina bifida a restare a galla tra le emozioni complesse associate con il fatto di avere un fratello o una sorella con questa patologia (153), nonché a sviluppare le proprie forze e risorse per poterlo affrontare. I centri riabilitativi dovrebbero considerare i bisogni dei figli che fanno visita ad un genitore che ha subito LM recentemente sia per fornire le strutture
appropriate che per agevolare la comprensione e l’adattamento emotivo dei figli (154).
Adattamento alla lesione midollare L’insorgere di LM può costituire una sfida all’autostima di una persona (155). Una persona dapprima indipendente può trovarsi ora senza controllo sulla propria vita e perfino sul proprio corpo e può dover dipendere dall’aiuto degli altri. Le PLM da trauma possono anche avere lesioni cerebrali traumatiche concomitanti che complicano l’adattamento (156). Molte variabili sono state associate con la qualità della vita dopo LM. Oltre la disabilità motoria, le complicanze secondarie, come l’incontinenza, la spasticità e il dolore, sono associate ad una minore soddisfazione di vita (111, 112, 122, 157, 158). Inoltre, muoversi in carrozzina può essere difficile negli ambienti non adattati e l’esperienza di incontrare barriere ambientali è associata ad una minore soddisfazione di vita (90). L’adattamento alla disabilità è un processo dinamico attraverso il quale le PLM potranno sentirsi meglio con il proprio ambiente (159). Un esame narrativo degli studi sulla soddisfazione di vita delle PLM (160) conferma che mediamente esse sperimentano livelli più alti di disagio e livelli più bassi di soddisfazione di vita rispetto alla popolazione generale. Tuttavia, la variazione è notevole e la maggiore parte delle PLM si adatta bene alla propria situazione. Ad esempio, in uno studio olandese, il 75% dei partecipanti ha sperimentato una diminuzione della soddisfazione di vita dopo LM, ma un anno dopo LM il 50% dei partecipanti era soddisfatto o molto soddisfatto con la propria vita (112). Un esame dei dati sulla salute mentale ha dimostrato che dal 20 al 30% delle PLM dimostra sintomi clinicamente significativi di depressione, la quale è notevolmente più alta della popolazione generale (160). Alcuni dati indicano che i sintomi della depressione diminuiscono con il passare del tempo, anche se questo non è certo. 139
Prospettive Internazionali sulla lesione del midollo spinale
Analogamente, molti studi dimostrano che dal 7 al 27% delle PLM sperimentano un disturbo da stress post-traumatico (160). Eppure questi dati dimostrano che nonostante il rischio più alto della media di avere problemi di salute mentale, la maggioranza delle PLM si adatta bene alla propria condizione. Gli studi più a lungo termine indicano un buon adattamento e una qualità di vita alta tra le persone che invecchiano con LM (158, 161). Uno studio ampio condotto in Francia su persone tetraplegiche, ad esempio, ha trovato che quasi i tre quarti dei rispondenti valutavano come abbastanza buono o migliore il proprio benessere soggettivo (122). Le PLM che riescono ad adattarsi, come altre persone con disabilità acquisite, sono quelle che hanno più successo nell’adattarsi mentalmente alla nuova situazione anche mediante, l’abbassamento di obiettivi irraggiungibili e la modifica dei criteri per definire il successo (155). Questo cambiamento mentale insieme alle possibilità materiali permettono alle persone di avere una vita soddisfacente (101). La teoria delle valutazioni cognitive suggerisce che il modo in cui le persone si percepiscono dipende dalla loro risposta cognitiva ad una situazione. Le persone utilizzano diverse strategie di sopportazione in base alla loro valutazione della situazione e alle loro preferenze comportamentali. Un contesto concettuale del percorso di adattamento ai problemi di salute è stato descritto da Moos (162) e mette in rilievo le risorse personali (ad es. personalità, intelletto), i fattori relativi alla salute, il contesto sociale e fisico (ad es. famiglia, ambiente), la valutazione cognitiva e i compiti adattivi (ad es. gestione dei sintomi, un’immagine positiva di sé, il relazionarsi con gli altri). Ognuno di questi insiemi di fattori costituisce un obiettivo potenziale di intervento. Una revisione recente, basata su 48 studi, dei fattori psicologici associati con la salute mentale e la soddisfazione di vita dopo LM, dimostra che i fattori associati costantemente con la soddisfazione di vita o con la salute mentale sono 140
il controllo percepito della vita, il senso di coerenza, fattori positivi come la speranza e uno scopo nella vita, i sentimenti del proprio valore come l’auto-efficacia e l’autostima, l’esperienza del sentimento positivo e negativo e le cognizioni post-traumatiche (163). Mentre la strategia dell’accettazione è un fattore determinante e coerente di adattamento, la maggior parte degli stili di sopportazione centrati sull’emozione non sono associati con soddisfazione di vita o salute mentale. Anche se la strategia di affrontare un problema attivamente è considerata in genere una strategia favorevole non è coerente con la letteratura scientifica. Forse quando le aspirazioni vengono bloccate, come nel caso di LM, è più efficace e pertinente all’adattamento positivo aggiustare le preferenze e gli obiettivi personali alla situazione mutata piuttosto che tentare attivamente di adattare le circostanze della vita alle preferenze personali (164).
Affrontando le barriere Riabilitazione L’accesso ai servizi riabilitativi dovrebbe permettere l’accesso alle tecnologie assistive appropriate e alla possibilità dell’autogestione dell’intestino e della vescica come pure ad avere altre informazioni e supporto, e tutto ciò costituisce un percorso importante verso l’adattamento. Un piccolo studio dallo Sri Lanka fornisce dati circa l’effetto migliorativo sulla salute generale ed i risultati a livello psicologico e sociale in pazienti di sesso maschile affetti da LM che avevano avuto accesso a trattamenti riabilitativi (165). In relazione al fatto che il modo in cui le persone si vedono prevede come esse si adatteranno alla disabilità fisica (166, 167), bisognerebbe rielaborare la percezione di un corpo lesionato durante il processo riabilitativo per riconquistare l’autostima positiva. I professionisti della riabilitazione possono avere un effetto significativo sull’auto-immagine del paziente, per esempio, se forniscono informazioni e creano opportunità come escursioni di gruppo che, secondo i dati, aiutano a superare la paura degli sguardi di coloro che li fissano (167).
Capitolo 6 Atteggiamenti, relazioni ed adattamento
Vi sono dati crescenti circa gli interventi psicologici dopo LM, ma sono ancora incompleti. Infatti, l’intervento studiato più frequentemente per ridurre l’umore depresso delle PLM è la terapia cognitivo-comportamentale (CBT), che comprende una varietà di tecniche per facilitare il cambiamento emotivo e comportamentale delle PLM (104, 168). La CBT può anche affrontare i pensieri “irrazionali” o negativi, aumentare le opportunità di partecipare ad attività gratificanti, ed insegnare a rilassarsi. Essa ha anche affrontato questioni come l’assertività, la socialità e la sessualità. Inoltre, offrire un trattamento CBT in un contesto di gruppo può essere economicamente conveniente per il sostegno tra pari, per pratica abituarsi alle socialità e per apprezzare altri punti di vista (169, 170). La Coping effectiveness training (CET) [affrontare la formazione per l’efficacia] può essere utile anche per le PLM (171, 172), specialmente per coloro che hanno gravi disturbi di salute mentale di fondo. L’intervento può funzionare perché cambia le valutazioni negative dei partecipanti circa le implicazioni della LM ed aumenta la loro percezione della possibilità di gestire le sue conseguenze ed in tal modo migliora il loro umore. Il supporto della terapia di gruppo (SGT), che sottolinea la condivisione di esperienze ed informazioni su temi relativi alla lesione, l’esplorazione di reazioni emotive e cognitive e l’occasione di avere supporto e istruzione da pari e psicologi è efficace nel ridurre la depressione e l’ansietà (173). Un gruppo di fattori psicologici positivi, tra cui l’auto-efficacia (credere nella capacità di riuscire in una situazione) e l’autostima (il senso del proprio valore) sono costantemente messi in relazione con una migliore qualità di vita. Si possono considerare queste variabili come risorse psicologiche che aiutano le persone a riconquistare la propria qualità di vita dopo LM. Per esempio, è più probabile che le persone con alta auto-efficacia ed alta autostima prendano controllo del proprio futuro di quelle con bassa auto-efficacia perché i primi credono fortemente nella loro
capacità di incidere sulla propria situazione per il meglio. Interventi psicologici positivi, finalizzati a coltivare sentimenti, comportamenti e pensieri positivi, si sono dimostrati efficaci in altre popolazioni (174) e potrebbero essere provati con le PLM. I dati esistono circa l’efficacia di interventi multidisciplinari e multi-modali destinati ad aumentare l’auto-efficacia (175). Le forme generali e specifiche di auto-efficacia – come per esempio per la vita attiva – vengono rafforzate da programmi di vita attiva ed indipendente (176, 177) o da attività fisiche o da programmi sportivi (178–180). In un programma di intervento multi-modale è stato effettuato dopo un anno un esame dimostrante che la conoscenza dell’auto-efficacia è stata migliorata (181) e correlata in modo significativo al controllo percepito. Mentre gli operatori sanitari riconoscono spesso l’importanza della speranza, sembra che trovino problematico bilanciare le speranze “irrealistiche” dei pazienti e quelle che gli operatori considerano più “realistiche” (182). Tuttavia, da un punto di vista attitudinale, nel periodo iniziale dopo LM, “la speranza di riprendersi” può costituire un meccanismo efficace di sopportazione di fronte ad una crisi sanitaria che sarebbe intollerabile altrimenti (182, 183). Perciò potrebbe essere utile tenere viva la speranza di una persona di riprendersi purché non ostacoli la sua partecipazione attiva al programma riabilitativo. Lo screening per i problemi di salute mentale nella prima fase di LM potrà individuare coloro che hanno bisogno di supporto psicologico. La terapia psicologica per PLM depresse nel periodo iniziale di ricovero in ospedale deve essere disponibile come parte integrante delle funzioni dell’equipe riabilitativa multidisciplinare. Ci sono forti indicazioni che gli interventi psicologici in questa fase sono utili e che possono prevenire i problemi di adattamento a lungo termine (160).
Gruppi di auto-aiuto
Le PLM solitamente danno valore alle situazioni di apprendimento di gruppo nelle quali possono 141
Prospettive Internazionali sulla lesione del midollo spinale
incontrare altre persone colpite analogamente e in questo modo sentirsi meno isolate (184, 185) come, per esempio, i gruppi di auto-aiuto ed altre forme di sostegno tra pari. Organizzazioni come il Back-Up Trust nel Regno Unito e il Spinal Injury Trust nella Nuova Zelanda offrono attività di formazione, sostegno e ripristino della propria sicurezza interiore, come fare la discesa in corda doppia e kayak (vedi Riquadro 6.2). In uno studio svolto in Francia la partecipazione all’attività comunitaria e l’incontrarsi frequentemente con amici erano associati in modo positivo con il benessere delle persone con tetraplegia (122), anche se il nesso di causalità non è stato ancora dimostrato. Nei paesi a basso e medio reddito le ONG possono svolgere un ruolo importante di sostegno della capacità di creare reti sociali, piattaforme di reti regionali ed organizzazioni di consumatori come quelle sostenute da Livability Irlanda nel Sud e Sudest Asiatico (190). L’ONG del Regno Unito chiamata Motivation gestisce la formazione di gruppi di pari e corsi per istruire i formatori in Malawi, Mozambico, Romania ed altri paesi a basso e medio reddito, allo scopo di creare una rete di pari, consiglieri e formatori competenti, che possono aiutare le persone recentemente paralizzate ad adattarsi alla nuova situazione (191). Il movimento delle persone con disabilità ha aiutato molti a sviluppare le reti sociali e perfino a trovare un partner (192, 193). Le organizzazioni e le reti di consumatori con LM svolgono un ruolo importante, oltre che nei consigli e nei servizi resi sotto forma di asssitenza, sport, occupazione e aiuto con gli alloggi (vedi Riquadro 6.3). Tuttavia, i dati provenienti da uno studio che includeva pazienti francesi con tetraplegia ha verificato che, mentre il 56% dei rispondenti riteneva che le persone con disabilità costituivano una comunità, solamente un terzo di esse si
sentiva appartenente ad essa (194). Le donne in particolare erano meno propense ad essere coinvolte, inoltre coloro che si sentivano più esclusi socialmente e che spesso sperimentavano i sintomi peggiori esprimevano un senso di appartenenza alle reti di disabilità (194).
Attività fisica e sport
L’attività fisica regolare può dare benefici sociali sostanziosi, fornire un mezzo per creare nuove amicizie, condividere esperienze, sviluppare reti di sostegno sociali e migliorare il funzionamento complessivo (195, 196). E’ stato riferito che la partecipazione allo sport ristabilisce il contatto con il mondo in generale perché agevola l’integrazione comunitaria e migliora le relazioni familiari (197–199). Una meta-analisi ha rilevato un’associazione positiva, che varia da lieve a moderata, tra l’attività fisica e il benessere soggettivo (200). Un’analisi della letteratura dimostra i benefici psicologici e fisiologici dal partecipare alle attività ricreative e fisiche (201) come, ad esempio, la maggiore interazione sociale. Una ricerca negli USA dimostra che le PLM impegnate nello sport ottengono punteggi più alti dei non-atleti per indipendenza fisica, mobilità, occupazione e integrazione sociale (197), con benefici psicologici particolarmente evidenti per coloro che sono impegnati negli sport di squadra (202). Uno studio tedesco ha rilevato che le persone impegnate attivamente nello sport avevano un tasso di occupazione più alto ed una migliore qualità di vita (203). Le persone, oltre ai terapisti tendono ad essere la fonte di motivazione per impegnarsi nello sport (204). Le attrezzature specializzate permettono alle PLM di praticare una vasta gamma di sport (205–207). In anni recenti le carrozzine a basso costo per il basket e il tennis sono state messe a disposizione per i paesi in via di sviluppo (208).
142
Capitolo 6 Atteggiamenti, relazioni ed adattamento
Riquadro 6.2. Organizzazioni e reti di consumatori con LM Le organizzazioni di consumatori e di supporto alle PLM possono essere fonti preziose di promozione e di sostegno tra pari. Le organizzazioni e le reti di consumatori con LM si trovano in diverse parti del mondo a livello nazionale, regionale e globale e sono unite politicamente e fattivamente, nello sforzo di migliorare le condizioni di vita e di valorizzare la partecipazione delle PLM. A volte questi gruppi si concentrano su singoli temi come le attività sportive (spesso in vista di reclutare élite di sportivi/e che potrebbero competere internazionalmente) o gruppi demografici specifici (ad es. veterani, bambini). A volte rispondono ai bisogni delle PLM nelle aree principali, dall’istruzione all’occupazione, alle modifiche delle case e al sostegno tra pari. Le organizzazioni di PLM possono funzionare come enti autonomi o far parte di organizzazioni o reti più grandi. In molti paesi a basso e medio reddito, possono non esistere organizzazioni specifiche dedicate alla LM e così gli interessi delle PLM sono promossi in parte di organizzazioni trasversali per le menomazioni. Tuttavia, organizzazioni sulla LM sono state create in alcuni paesi a basso reddito tra cui il Nepal e l’Uganda. In alcuni paesi le piccole iniziative locali di ex pazienti si sono evolute come risultato del bisogno personale di assistenza e di un alloggio adatto e si sono unite per creare organizzazione di rete nazionale come il Spinal Cord Injuries dell’Australia (SCIA), che fornisce servizi di alloggio ed assistenza, occupazione e consulenza del servizio sociale. Inoltre il SCIA ospita un dipartimento di sostegno che mira a promuovere l’inclusione e i gruppi di pressione per programmi specifici o per cambiamenti legislativi, per esempio, attraverso la presentazione a comitati governativi (ad es. circa la fornitura di servizi sanitari e di professionisti medici nelle aree rurali) o dando input ai processi di revisione delle politiche (ad es. la revisione delle tabelle per la valutazione dell’infortunio lavorativo per la pensione di disabilità) (186). Il SCIA nel passato ha appoggiato rivendicazioni personali come nel caso di un reclamo di discriminazione da parte dei taxi (187). Le reti regionali possono essere un mezzo per condividere le esperienze e i fattori di successo nell’attuazione del cambiamento e possono offrire sostegno ad iniziative, volte a creare organizzazioni nazionali. La European Spinal Cord Injury Federation (ESCIF) [Federazione Europea Lesione Midollare] è stata istituita nel 2006 e rappresenta 26 organizzazioni nazionali di persone con lesione midollare in tutta l’Europa. Il suo ruolo è di condividere le informazioni, tenere conferenze annuali e condurre la propria ricerca su temi come i registri sulle mielolesioni o la fornitura di trattamenti sanitari specifici per la LM e di riabilitazione (188). Sviluppando queste esperienze di successo a livello nazionale e regionale, l’ESCIF e la Rete Asiatica Lesione Midollare (ASCoN) di consumatori hanno istituito nel 2012 la Rete Globale di Consumatori con Lesione Midollare con l’obiettivo di riunire i gruppi esistenti di consumatori con lesione midollare, creare nuovi gruppi nei paesi e nelle regioni che non sono serviti ed ampliare le proprie attività. Le attività e i piani principali della Rete Globale di Consumatori con lesione midollare sono di:
■■ formalizzare i canali comunitari (ad es. siti web, aggiornamenti delle notizie); ■■ collegare le organizzazioni e le persone chiave per sostenere e promuovere le iniziative locali; ■■ generare fondi ed altro supporto per le attività della rete globale; ■■ nominare “ambasciatori” della lesione midollare nel mondo; ■■ organizzare un’equipe di volontari con LM per aiutare i gruppi LM in altri paesi/regioni del mondo; ■■ organizzare riunioni mondiali delle reti di consumatori con LM; ■■ nel lungo tempo formalizzare la rete come federazione od organizzazione globale.
143
Prospettive Internazionali sulla lesione del midollo spinale
Riquadro 6.3 Sostegno tra pari nello Sri Lanka L’Associazione della Lesione Midollare (SIA) dello Sri Lanka è stata avviata da PLM ed ha messo in atto molti programmi utili oltre la formazione per gruppi di pari. Ogni mese i membri del SIA fanno visita all’ospedale generale ed incontrano persone che hanno subito LM recentemente. Essi fanno da mentori ed aiutano le persone recentemente infortunate a superare lo shock iniziale del trauma, dando loro informazioni e dimostrando che è possibile vivere una vita utile anche con LM. Relazioni aneddotiche rivelano che questi consigli da pari hanno aiutato molte persone a recuperare il senso alla vita dopo la paralisi da LM. Come apprezzabile nella seguente testimonianza, questo programma sembra avere successo e può servire da modello per altri che desiderano adottarlo e sviluppare ulteriormente i programmi di consulenza tra pari. “Ho avuto un incidente stradale nel mese di settembre del 1980 ed ho subito una lesione midollare a livello T4. Dopo tre mesi di terapia in un ospedale generale sono stato trasferito all’unico ospedale disponibile allora per la riabilitazione di PLM, il Ragama Rehabilitation Hospital. Un altro paziente nell’ospedale mi ha mostrato come improvvisare un catetere maschile esterno che ho iniziato ad usare dopo aver rinunciato al catetere interno fornitomi precedentemente. Per andare di corpo uno si siede sulla tazza del gabinetto e spera per il meglio, avevo piccole ferite sulla natica che erano fastidiose. La mia vita è cambiata nel 1998. “Motivation” del Regno Unito ha aperto un ufficio nello Sri Lanka per formare gli infermieri dell’ospedale riabilitativo nella gestione di pazienti con LM e per aprire un laboratorio per la produzione di carrozzine. Inoltre, ha svolto un programma di formazione per i formatori di gruppi tra pari al quale ho partecipato. Il programma di formazione di cinque giorni comprendeva lezioni su che cosa è la LM, la prevenzione delle ferite da pressione, l’importanza di utilizzare un buon cuscino per la carrozzina, il controllo dell’intestino, la gestione della vescica, la cura della cute, la sessualità, le modalità di utilizzo della carrozzina, la manutenzione della carrozzina ed altri temi. Nel programma ho imparato la stimolazione digitale e l’evacuazione manuale delle feci per gestire l’intestino. Prima ero molto ansioso quando dovevo viaggiare data all’incertezza relativa al movimento intestinale. Dopo la formazione ho cambiato il cuscino della carrozzina che usavo e così ho prevenuto le ulcere da pressione. Il fatto che la formazione fosse stata impartita da un’altra PLM ha avuto un grande effetto. In seguito alla formazione le attività della vita quotidiana erano molto più facili. Mi sentivo a mio agio e fiducioso quando viaggiavo localmente e all’estero. Successivamente la SIA ha continuato la formazione di gruppi tra pari ed era gratificante vedere il miglioramento nella qualità di vita delle PLM che hanno ricevuto la formazione”. Cyril, Sri Lanka
Conclusione e raccomandazioni Le persone con disabilità normalmente valutano la loro qualità di vita più alta di quanto la valutino le persone senza disabilità (20, 147). I sentimenti di dignità, orgoglio, fiducia, speranza e gioia nelle interazioni sociali danno alla PLM una base solida per una vita di successo (37, 90). Questi atteggiamenti positivi sono stati collegati alla dimensione e al tipo di sostegno dei familiari ed amici.
Gli interventi per sfidare gli atteggiamenti negativi nei confronti delle PLM ed altre disabilità dovrebbero essere una priorità, come indicato nell’articolo 8 della CRPD. In particolare, gli operatori sanitari ed altri fornitori di servizi dovrebbero essere formati per far sì che trattino le PLM e altre disabilità con rispetto e dignità. La fornitura di servizi appropriati, sia durante la riabilitazione che nella vita successiva in comunità, può agevolare l’adattamento e il miglioramento della qualità di vita delle PLM. L’informazione adeguata e il sostegno psicologico sono particolarmente importanti. Mentre i bisogni
144
Capitolo 6 Atteggiamenti, relazioni ed adattamento
di assistenza sono colmati in genere dai parenti, la fornitura di assistenza in casa, assistenza di sollievo ed assistenza personale possono rendere libere le PLM e i loro familiari. La partecipazione alle attività sportive, culturali e spirituali può aumentare la fiducia in sé e il benessere. Le seguenti raccomandazioni indicano le specifiche vie da seguire.
Sviluppare servizi di assistenza Ove possibile, sostenere lo sviluppo dei servizi di assistenza personale tramite: ■ lo sviluppo di un’assistenza comunitaria attraverso procedure contrattuali e di valutazione che sostengono i programmi a favore del consumatore; ■ lo sviluppo di contesti legali e finanziari che permettono i pagamenti diretti per l’assistenza personale; ■ potenziare le capacità di PLM e di persone con altre disabilità per fruire dell’assistenza personale attraverso, per esempio, la promozione di organizzazioni infrastrutturali che possono sostenere gli utenti dell’assistenza personale.
Fornire sostegno Sostenere bambini ed adulti con LM per ottenere l’autostima e l’adattamento attraverso ad esempio: ■ assicurare l’accesso a consulenze ed informazioni negli ambienti riabilitativi e nella comunità in genere, tra cui le informazioni sulla sessualità; ■ sostenere lo sviluppo delle reti fra pari e le organizzazioni di auto-aiuto; ■ aiutare le persone ad avere accesso alle opportunità sportive, religiose, culturali, politiche e di svaghi come pure all’istruzione e all’occupazione. Sostenere i familiari e gli assistenti di persone con disabilità mettendo a disposizione: ■ consulenze, informazioni e consigli per familiari e assistenti; ■ opportunità di conoscere altre persone in situazioni analoghe sostenendo, ad esempio, lo sviluppo di gruppi per l’auto-aiuto; ■ consulenza matrimoniale ed altri interventi a favore di coppie interessate dalla disabilità, tra cui informazioni e consigli circa i rapporti intimi; ■ sostegno emotivo e sociale per i fratelli di bambini con spina bifida e LM, compresi servizi per la transizione all’età adulta; ■ assistenza di sollievo ed altro supporto per famiglie di bambini con spina bifida e LM ove possibile ed appropriato.
Cambiare atteggiamenti Aiutare a far sì che gli operatori, altri fornitori chiave e membri del pubblico in genere sviluppino atteggiamenti positivi verso la disabilità: ■ assicurare che le questioni dei diritti umani relativi alla disabilità siano compresi nei programmi di studio della prima laurea per insegnanti, medici e professionisti collegati con la medicina; ■ fornire formazione circa l’uguaglianza della disabilità al personale responsabile dell’assistenza clienti come nei trasporti e nei servizi sociali e di residenze; ■ sostenere le iniziative di consapevolezza pubblica, informazione ed istruzione che sfidano gli atteggiamenti negativi verso la disabilità, ad esempio, tramite le scuole e i media.
Promuovere la ricerca Aumentare gli interventi basati sulle prove promuovendo la ricerca su temi quali: ■ interventi efficaci per sfidare gli atteggiamenti negativi verso la disabilità;
145
Prospettive Internazionali sulla lesione del midollo spinale
■ la convenienza economica e la soddisfazione
dei consumatori verso i piani di assistenza destinati ai consumatori; ■ l’efficacia di interventi psicologici per sostenere l’adattamento alla LM;
■ il ruolo di interventi come lo sport, i mezzi di
comunicazione sociali e i gruppi di auto-aiuto nel sostegno delle persone con lesione midollare per sviluppare l’autostima positiva e creare relazioni.
Referenze 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. Chan F, Da Silva Cardoso E, Chronister, J.A. eds. Understanding psychosocial adjustment to chronic illness and disability: a handbook for evidence-based practitioners in rehabilitation. New York, NY, Springer Publishing 2009. Boswell BB, Dawson M, Heininger E. Quality of life defined by adults with spinal cord injuries. Journal of Rehabilitation, 1998, 64:27-32. Hampton NZ, Qin-Hilliard DB. Dimensions of quality of life for Chinese adults with spinal cord injury: a qualitative study. Disability and Rehabilitation, 2004, 26:203-212. doi: http://dx.doi.org/10.1080/09638280310001639704 PMID:15164954 United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). Stiker HJ. Corps Infirmes et Sociétés. Paris, Dunod, 1997. Weinberg N. Another perspective: attitudes of people with disabilities. In: Yuker HE, ed. Attitudes toward persons with disabilities. New York, NY, Springer, 1988 (pp. 141–153). Wright B. Attitudes and the fundamental negative bias: conditions and corrections. In: Yuker HE, ed. Attitudes toward persons with disabilities. New York, NY, Springer, 1988 (pp. 3–21). Garland-Thomson R. Staring: how we look. Oxford, Oxford University Press, 2009. Reeve D. Psycho-emotional disablism: the missing link? In: Watson N, Roulstone A, Thomas C, eds. Routledge handbook of disability studies. Routledge, London, 2012. Gallois C. Communicating disability: stereotypes, identity and motivation. In: Ng SH, Canddlin CN, Chiu CY, eds. Language matters: communication, identity and culture. Hong Kong, City University of Hong Kong Press, 2004. Reinhardt JD et al. Visual perception and appraisal of persons with impairments: a randomised controlled field experiment using photo elicitation. Disability and Rehabilitation, 2011, 33:441-452. Epub 2010 Jul 23 doi: http://dx.doi.org/10.3109/09638288.2010.5 00344 PMID:20653364 Ingstad B, Whyte SR, editors. Disability and culture. Berkeley, CA, University of California Press, 1995. Murray TA. Switching from hospital-based practice to home care. Home Care Provider, 1996, 1:79-82. doi: http://dx.doi. org/10.1016/S1084-628X(96)90233-6 PMID:9157912 Naami A, Havashi R. Perceptions about disability among Ghanaian university students. Journal of Social Work in Disability & Rehabilitation, 2012, 11:100-111. doi: http://dx.doi.org/10.1080/1536710X.2012.677616 PMID:22630599 van’t Veer T et al. Quality of life for families with spina bifida in Kenya. Tropical Doctor, 2008, 38:160-162. doi: http://dx.doi. org/10.1258/td.2007.070053 PMID:18628544 Maloni PK et al. Perceptions of disability among mothers of children with disability in Bangladesh: implications for rehabilitation service delivery. Disability and Rehabilitation, 2010, 32:845-854. doi: http://dx.doi. org/10.3109/09638280903326063 PMID:20131951 Gray DB et al. A subjective measure of environmental facilitators and barriers to participation for people with mobility limitations. Disability and Rehabilitation, 2008, 30:434-457. doi: http://dx.doi.org/10.1080/09638280701625377 PMID:17943511 Noreau L, Fougeyrollas P, Boschen KA. Perceived influence of the environment on social participation among individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2002, 7:56-72. doi: http://dx.doi.org/10.1310/1UGA-EY2T-N6XP-1PHE Lys K, Pernice R. Perceptions of positive attitudes towards people with spinal cord injury. International Journal of Rehabilitation Research, 1995, 18:35-43. doi: http://dx.doi.org/10.1097/00004356-199501000-00004 PMID:7797318 Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Social Science & Medicine, 1999, 48:977-988. doi: http://dx.doi.org/10.1016/S0277-9536(98)00411-0 PMID:10390038 Amundson R. Quality of life, disability, and hedonic psychology. Journal for the Theory of Social Behaviour, 2010, 40:374-392. doi: http://dx.doi.org/10.1111/j.1468-5914.2010.00437.x Hernandez B et al. Construction and validation of the Disability Rights Attitude Scale: assessing attitudes toward the Americans with Disabilities Act (ADA). Rehabilitation Psychology, 1998, 43:203-218. doi: http://dx.doi.org/10.1037/0090-5550.43.3.203
12. 13. 14. 15. 16.
17. 18. 19. 20. 21. 22.
146
Capitolo 6 Atteggiamenti, relazioni ed adattamento
23. Lyons M. Enabling or disabling? Students’ attitudes towards people with disabilities. The American Journal of Occupational Therapy., 1991, 45:311-316. 24. Peterson PA, Quarstein VA. Disability awareness training for disability professionals. Disability and Rehabilitation, 2001, 23:43-48. doi: http://dx.doi.org/10.1080/09638280150211293 PMID:11213323 25. Saketkoo L et al. Effects of a disability awareness and skills training workshop on senior medical students as assessed with self ratings and performance on a standardized patient case. Teaching and Learning in Medicine, 2004, 16:345-354. doi: http://dx.doi. org/10.1207/s15328015tlm1604_7 PMID:15582871 26. Ison N et al. “Just like you”: a disability awareness programme for children that enhanced knowledge, attitudes and acceptance: pilot study findings. Developmental Neurorehabilitation, 2010, 13:360-368. doi: http://dx.doi.org/10.3109/17518423.2010.496764 PMID:20828333 27. Rillotta F, Nettelbeck T. Effects of an awareness program on attitudes of students without an intellectual disability towards persons with an intellectual disability. Journal of Intellectual & Developmental Disability, 2007, 32:19-27. doi: http://dx.doi. org/10.1080/13668250701194042 PMID:17365364 28. Lindsay S, Edwards A. A systematic review of disability awareness interventions for children and youth. Disability and Rehabilitation, 2012,epub ahead of print PMID:22831703 29. Pointon A, Davies C. Framed: interrogating disability in the media. London, British Film Institute publications, 2008. 30. Rauch A et al. Rehabilitation needs assessment in persons with spinal cord injury following the 2010 earthquake in Haiti: a pilot study using an ICF-based tool. Journal of Rehabilitation Medicine, 2011, 43:969-975. doi: http://dx.doi.org/10.2340/16501977-0896 PMID:22031341 31. Hill R. Haiti Hospital Appeal Community Based Rehabilitation Pilot Survey –The effect of disability within families in Northern Haiti 2011. Haiti Hospital Appeal, 2011.Unpublished. 32. Phillips C. Reaching the “cocobai”: reconstruction and persons with disabilities in Haiti. Policy paper. Ottawa, FOCAL Canadian Foundation for the Americas, 2011. 33. United Nations. (UN) Panel discussion on sports for inclusive development: sports,disability and development: key to empowerment of persons with disabilities and their communities. New York, United Nations, 2011 (http://www.un.org/ disabilities/default.asp?id=1574/, accessed 29.5.2012) 34. Smith DL. Disparities in patient–physician communication for persons with a disability from the 2006 Medical Expenditure Panel Survey (MEPS). Disability and Health Journal, 2009, 2:206-215. doi: http://dx.doi.org/10.1016/j. dhjo.2009.06.002 PMID:21122761 35. Aulagnier M et al. General practitioners’ attitudes towards patients with disabilities: the need for training and support. Disability and Rehabilitation, 2005, 27:1343-1352. doi: http://dx.doi.org/10.1080/09638280500164107 PMID:16321918 36. Furlan JC et al. Attitudes towards the older patients with spinal cord injury among registered nurses: a cross-sectional observational study. Spinal Cord, 2009, 47:674-680. doi: http://dx.doi.org/10.1038/sc.2009.23 PMID:19365396 37. Gerhart KA et al. Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Annals of Emergency Medicine, 1994, 23:807-812. doi: http://dx.doi.org/10.1016/S0196-0644(94)70318-3 PMID:8161051 38. Dorji S, Solomon P. Attitudes of health professionals toward persons with disabilities in Bhutan. Asia Pacific Disability Rehabilitation Journal, 2009, 20:32-42. 39. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/ publications/2011/9789240685215_eng.pdf, accessed 10 May 2012). 40. Lucke KT. Knowledge acquisition and decision-making: spinal cord injured individuals perceptions of caring during rehabilitation. SCI Nursing, 1997, 14:87-95. PMID:9355615 41. Bach CA, McDaniel RW. Quality of life in quadriplegic adults: a focus group study. Rehabilitation Nursing, 1993, 18:364-367. doi: http://dx.doi.org/10.1002/j.2048-7940.1993.tb00790.x PMID:7938891 42. Eddey GE, Robey KL. Considering the culture of disability in cultural competence education. Academic Medicine, 2005, 80:706712. doi: http://dx.doi.org/10.1097/00001888-200507000-00019 PMID:15980092 43. Shakespeare T, Iezzoni LI, Groce NE. Disability and the training of health professionals. Lancet, 2009, 374:1815-1816. doi: http:// dx.doi.org/10.1016/S0140-6736(09)62050-X PMID:19957403 44. Spain R. In practice from the point of view of a disabled nurse. In: Swain J, French S, eds. Disability on equal terms. London, Sage, 2008. 45. Baum CM, Gray DB. The family and rehabilitation services: minimizing the impact on personal relationships. In: McColl M, Bickenbach J, eds. Introduction to disability. London, Saunders, 1998: 167–173. 46. Weitzenkamp DA et al. Spouses of spinal cord injury survivors, the added impact of caregiving. Archives of Physical Medicine and Rehabilitation, 1997, 78:822-827. doi: http://dx.doi.org/10.1016/S0003-9993(97)90194-5 PMID:9344300
147
Prospettive Internazionali sulla lesione del midollo spinale
47. Blanes L, Carmagnani MI, Ferreira LM. Health-related quality of life of primary caregivers of persons with paraplegia. Spinal Cord, 2007, 45:399-403. doi: http://dx.doi.org/10.1038/sj.sc.3102038 PMID:17310256 48. de Azevedo GR, Santos VL. Handicapped caregiver: the social representations of family members about the caregiving process. Revista Latino-Americana de Enfermagem, 2006, 14:770-780. doi: http://dx.doi.org/10.1590/S0104-11692006000500020 PMID:17117264 49. Post MW, Bloemen J, de Witte LP. Burden of support for partners of persons with spinal cord injuries. Spinal Cord, 2005, 43:311319. doi: http://dx.doi.org/10.1038/sj.sc.3101704 PMID:15685263 50. Gajraj-Singh P. Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord, 2011, 49:928-934. doi: http://dx.doi.org/10.1038/sc.2011.15 PMID:21383762 51. Hagglund KJ et al. A comparison of consumer-directed and agency-directed personal assistance services programmes. Disability and Rehabilitation, 2004, 26:518-527. doi: http://dx.doi.org/10.1080/09638280410001672472 PMID:15204459 52. McLennan M et al. Rehabilitation learning needs: patient and family perceptions. Patient Education and Counseling, 1996, 27:191199. doi: http://dx.doi.org/10.1016/0738-3991(95)00799-7 PMID:8788349 53. DeSanto-Madeya S. Adaptation to spinal cord injury for families post-injury. Nursing Science Quarterly, 2009, 22:57-66. doi: http:// dx.doi.org/10.1177/0894318408327295 PMID:19176861 54. Schulz R et al. Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology, 2009, 54:1-15. doi: http://dx.doi.org/10.1037/a0014932 PMID:19618698 55. Elliott TR et al. Problem-solving training via videoconferencing for family caregivers of persons with spinal cord injuries: a randomized controlled trial. Behaviour Research and Therapy, 2008, 46(11):1220–1229 (E-pub 26 August 2008). 56. Elliott TR, Berry JW. Brief problem-solving training for family caregivers of persons with recent-onset spinal cord injuries: a randomized controlled trial. Journal of Clinical Psychology, 2009, 65:406-422. doi: http://dx.doi.org/10.1002/ jclp.20527 PMID:19229946 57. Aitken ME et al. Experiences from the development of a comprehensive family support program for pediatric trauma and rehabilitation patients. Archives of Physical Medicine and Rehabilitation, 2005, 86:175-179. doi: http://dx.doi.org/10.1016/j. apmr.2004.02.026 PMID:15641010 58. Holmbeck GN et al. Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions. Developmental and Behavioral Pediatrics, 2006, 27:249-277. doi: http://dx.doi. org/10.1097/00004703-200606000-00012 59. Mullins LL et al. The influence of respite care on psychological distress in parents of children with developmental disabilities: a longitudinal study. Children’s Services (Mahwah, N.J.), 2002, 5:123-138. doi: http://dx.doi.org/10.1207/S15326918CS0502_06 60. Miles M. Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society, 2002, 17:643-658. doi: http://dx.doi.org/10.1080/0968759022000010425 61. Hartley S et al. How do carers of disabled children cope? The Ugandan perspective. Child: Care, Health and Development, 2005, 31:167-180. doi: http://dx.doi.org/10.1111/j.1365-2214.2004.00464.x PMID:15715696 62. Kumamoto K, Arai Y, Zarit SH. Use of home care services effectively reduces feelings of burden among family caregivers of disabled elderly in Japan: preliminary results. International Journal of Geriatric Psychiatry, 2006, 21:163-170. doi: http://dx.doi. org/10.1002/gps.1445 PMID:16416464 63. Mayo-Wilson E, Montgomery P, Dennis JA. Personal assistance for adults (19–64) with physical impairments. [Review]Cochrane Database of Systematic Reviews, 2008, Issue 3:CD006856. doi: http://dx.doi.org/10.1002/14651858. CD006856.pub2 64. Sekaran P et al. Community reintegration of spinal cord-injured patients in rural south India. Spinal Cord, 2010, 48:628-632. doi: http://dx.doi.org/10.1038/sc.2010.6 PMID:20142832 65. Mansell J. Deinstitutionalisation and community living: progress, problems and priorities. Journal of Intellectual & Developmental Disability, 2006, 31:65-76. doi: http://dx.doi.org/10.1080/13668250600686726 PMID:16782591 66. Chiriacescu D. Shifting the paradigm in social service provision: making quality services accessible for people with disabilities in South East Europe. Belgrade, Disability Monitor Initiative for South East Europe, 2008. 67. Vaidyanathan S et al. Community-care waiting list for persons with spinal cord injury. Spinal Cord, 2001, 39:584-588. doi: http:// dx.doi.org/10.1038/sj.sc.3101212 PMID:11641808 68. Müller R et al. The role of social support and social skills in people with spinal cord injury – a systematic review of the literature. Spinal Cord, 2012, 50:94-106. doi: http://dx.doi.org/10.1038/sc.2011.116 PMID:22006079 69. Bains P, Minhas AS. Profile of home-based caregivers of bedridden patients in North India. Indian Journal of Community Medicine, 2011, 36:114-119. doi: http://dx.doi.org/10.4103/0970-0218.84129 PMID:21976795
148
Capitolo 6 Atteggiamenti, relazioni ed adattamento
70. Lansley P et al. Adapting the homes of older people: a case study of costs and savings. Building Research and Information, 2004, 32:468-483. doi: http://dx.doi.org/10.1080/0961321042000269429 71. Kim KM, White GW, Fox MH. Comparing outcomes of persons choosing consumer-directed or agency-directed personal assistance services. Journal of Rehabilitation, 2006, 72:32-43. 72. DICAG. Disabled children’s action group (DICAG) South Africa. Manchester, Enabling Education Network, 2001 (http://www.eenet. org.uk/resources/docs/dicag.php, accessed 22 April 2012). 73. LaPlante MP et al. Unmet need for personal assistance services: estimating the shortfall in hours of help and adverse consequences. Journal of Gerontology. Series B, Psychological sciences and social sciences, 2004, 59:S98–S108. doi:10.1093/ geronb/59.2.S98 doi: http://dx.doi.org/10.1093/geronb/59.2.S98 PMID:15014097 74. Benjamin AE, Matthias R, Franke TM. Comparing consumer-directed and agency models for providing supportive services at home. [Part II]. Health Services Research, 2000, 35:351-366. PMID:10778820 75. Knickman JR, Stone RI. The public/private partnership behind the cash and counseling demonstration and evaluation: its origins, challenges, and unresolved issues. Health Services Research, 2007, 42:362-377. doi: http://dx.doi.org/10.1111/j.14756773.2006.00675.x PMID:17244288 76. Clark MJ, Hagglund KJ, Sherman AK. A longitudinal comparison of consumer-directed and agency-directed personal assistance service programmes among persons with physical disabilities. Disability and Rehabilitation, 2008, 30:689-695. doi: http://dx.doi. org/10.1080/09638280701463878 PMID:17852213 77. Kaye HS. The personal assistance workforce: trends in supply and demand. Health Affairs, 2006, 25:1113-1120. doi: http://dx.doi. org/10.1377/hlthaff.25.4.1113 PMID:16835193 78. Warms CA et al. Measurement and description of physical activity in adult manual wheelchair users. Disability and Health Journal, 2008, 1:236-244. doi: http://dx.doi.org/10.1016/j.dhjo.2008.07.002 PMID:21122734 79. Kehn M, Kroll T. Staying physically active after spinal cord injury: a qualitative exploration of barriers and facilitators to exercise participation. BioMed Central Public Health, 2009, 9:168. doi: http://dx.doi.org/10.1186/1471-2458-9-168 PMID:19486521 80. Coble-Temple A, Mona LR, Bleecker T. Accessing personal assistance services in the workplace: struggles and successes. Journal of Vocational Rehabilitation, 2003, 18:113-123. 81. Weitzenkamp DA, Whiteneck GG, Lammertse DP. Predictors of personal care assistance for people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2002, 83:1399-1405. doi: http://dx.doi.org/10.1053/ apmr.2002.35087 PMID:12370876 82. Clevnert U, Johansson L. Personal assistance in Sweden. Journal of Aging & Social Policy, 2007, 19:65-80. doi: http://dx.doi. org/10.1300/J031v19n03_05 PMID:17613470 83. Takamine Y. The cultural perspectives of independent living and self-help movement of people with disabilities: a review of empirical findings. Asia Pacific Journal on Disability, 1998 (http://www.dinf.ne.jp/doc/english/asia/resource/z00ap/002/ z00ap00208.html, accessed 25 April 2012). 84. Bieler RB. Independent living in Latin America: progress in adapting a “First World” philosophy to the realities of the “Third World”. In: Garcia Alonso JV, ed. El movimiento de vida independiente: experiencias internacionales. Madrid, Fundación Luis Vives, 2003: 218–242. 85. NSIS. National Serious Injury Service. Wellington, Accident Compensation Corporation, Government of New Zealand, 2008 (http:// www.acc.co.nz/making-a-claim/how-do-i-make-a-claim/ECI0012, accessed 27 April 2012). 86. Riddell S et al. The development of direct payments: implications for social justice. Social Policy and Society, 2005, 4:75-85. doi: http://dx.doi.org/10.1017/S1474746404002209 87. Schopp LH et al. Evaluation of a consumer-personal assistant training project. Disability and Rehabilitation, 2007, 29:403-410. doi: http://dx.doi.org/10.1080/09638280600835903 PMID:17364793 88. Hagglund KJ et al. Consumer-assistant education to reduce the occurrence of urinary tract infections among persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2005, 10:53-62. doi: http://dx.doi.org/10.1310/JQ0J-BX6J-RAPB-P2T4 89. van Leeuwen CMC et al. Social support and life satisfaction in spinal cord injury during and up to one year after inpatient rehabilitation. Journal of Rehabilitation Medicine, 2010, 42:265-271. doi: http://dx.doi.org/10.2340/16501977-0502 PMID:20411223 90. Whiteneck G et al. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1793-1803. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.024 PMID:15520974 91. Pearcey TE, Yoshida KK, Renwick RM. Personal relationships after a spinal cord injury. International Journal of Rehabilitation Research, 2007, 30:209-219. doi: http://dx.doi.org/10.1097/MRR.0b013e32829fa3c1 PMID:17762766
149
Prospettive Internazionali sulla lesione del midollo spinale
92. Jensen MP et al. Psychosocial factors and adjustment to chronic pain in persons with physical disabilities: a systematic review. Archives of Physical Medicine and Rehabilitation, 2011, 92:146-160. doi: http://dx.doi.org/10.1016/j. apmr.2010.09.021 PMID:21187217 93. Feher S, Maly R. Coping with breast cancer in later life: the role of religious faith. Psycho-Oncology, 1999, 8:408-416. doi: http:// dx.doi.org/10.1002/(SICI)1099-1611(199909/10)8:5<408::AID-PON409>3.0.CO;2-5 PMID:10559800 94. McColl MA et al. Changes in spiritual beliefs after traumatic disability. Archives of Physical Medicine and Rehabilitation, 2000, 81:817-823. PMID:10857530 95. Matheis EN, Tulsky DS, Matheis RJ. The relationship between spirituality and quality of life among individuals with spinal cord injury. Rehabilitation Psychology, 2006, 51:265-271. doi: http://dx.doi.org/10.1037/0090-5550.51.3.265 96. Forchheimer MB, Tate DG. The relationship of spirituality and depression to health among people with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2007, 12:23-34. doi: http://dx.doi.org/10.1310/sci1203-23 97. George LK et al. Spirituality and health: what we know, what we need to know. Journal of Social and Clinical Psychology, 2000, 19:102-116. doi: http://dx.doi.org/10.1521/jscp.2000.19.1.102 98. Franklin KL et al. Relationships among religiousness, spirituality, and health for individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2008, 14:76-88. doi: http://dx.doi.org/10.1310/sci1402-76 PMID:20351789 99. Babamohamadi H, Negarandeh R, Dehghan-Naveri N. Barriers to and facilitators of coping with a spinal cord injury for Iranian patients: a qualitative study. Nursing & Health Sciences, 2011, 13:207-215. doi: http://dx.doi.org/10.1111/j.1442-2018.2011.00602.x PMID:21595815 100. DeVivo MJ, Fine PR. Spinal cord injury: its short-term impact on marital status. Archives of Physical Medicine and Rehabilitation, 1985, 66:501-504. PMID:4026550 101. Crewe NM, Krause JS. Marital relationships and spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1988, 69:435438. PMID:3377669 102. DeVivo MJ et al. Outcomes of post-spinal cord injury marriages. Archives of Physical Medicine and Rehabilitation, 1995, 76:130-138. doi: http://dx.doi.org/10.1016/S0003-9993(95)80022-0 PMID:7848071 103. Kreuter M et al. Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury. Spinal Cord, 1998, 36:252-261. doi: http://dx.doi.org/10.1038/sj.sc.3100592 PMID:9589525 104. Craig AR et al. Immunizing against depression and anxiety after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1998, 79:375-377. doi: http://dx.doi.org/10.1016/S0003-9993(98)90136-8 PMID:9552101 105. Arango-Lasprilla JC et al. Influence of race/ethnicity on divorce/separation 1, 2, and 5 years post spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:1371-1378. doi: http://dx.doi.org/10.1016/j.apmr.2009.02.006 PMID:19651271 106. DeVivo M, Richards JS. Community reintegration and quality of life following spinal cord injury. Paraplegia, 1992, 30:108-112. 107. El Ghatti AZ, Hanson RW. Outcome of marriages existing at the time of a male’s spinal cord injury. Journal of Chronic Diseases, 1975, 28:383-388. doi: http://dx.doi.org/10.1016/0021-9681(75)90034-X PMID:1159036 108. Chen HY, Boore JR. Living with a relative who has a spinal cord injury: a grounded theory approach. Journal of Clinical Nursing, 2009, 18:174-182. doi: http://dx.doi.org/10.1111/j.1365-2702.2008.02355.x PMID:19120747 109. Bocarro J, Sable J. Finding the right P.A.T.H: exploring the familial relationships and the role of a community TR program in the initial years after a spinal cord injury. Therapeutic Recreation Journal, 2003, 37:58-72. 110. Kreuter M. Spinal cord injury and partner relationships. Spinal Cord, 2000, 38:2-6. 111. Kennedy P et al. A multi-centre study of the community needs of people with spinal cord injuries: the first 18 months. Spinal Cord, 2010, 48:15-20. doi: http://dx.doi.org/10.1038/sc.2009.65 PMID:19528997 112. van Koppenhagen CF et al. Changes and determinants of life satisfaction after spinal cord injury: a cohort study in the Netherlands. Archives of Physical Medicine and Rehabilitation, 2008, 89:1733-1740. doi: http://dx.doi.org/10.1016/j. apmr.2007.12.042 PMID:18675395 113. Kreuter M, Sullivan M, Siösteen A. Sexual adjustment after spinal cord injury – comparison of partner experiences in pre- and postinjury relationships. Paraplegia, 1994, 32:759-770. doi: http://dx.doi.org/10.1038/sc.1994.122 PMID:7885719 114. Phelps J et al. Spinal cord injury and sexuality in married or partnered men: activities, function, needs, and predictors of sexual adjustment. Archives of Sexual Behavior, 2001, 30:591-602. doi: http://dx.doi.org/10.1023/A:1011910900508 PMID:11725457 115. Anderson KD et al. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 2007, 45:328-337. PMID:17033620 116. Sakellariou D, Sawada Y. Sexuality after spinal cord injury: the Greek male’s perspective. The American Journal of Occupational Therapy, 2006, 60:311-319. doi: http://dx.doi.org/10.5014/ajot.60.3.311 PMID:16776398 117. Sharma SC et al. Assessment of sexual functions after spinal cord injury in Indian patients. International Journal of Rehabilitation Research, 2006, 29:17-25. doi: http://dx.doi.org/10.1097/01.mrr.00001855947.56810.fc PMID:16432385
150
Capitolo 6 Atteggiamenti, relazioni ed adattamento
118. Zhang J. A survey of the needs of and services for persons with physical disability in China. Asia Pacific Disability Rehabilitation Journal, 2007, 18:49-85. 119. Anderson CJ et al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine, 2004, 27:S98-S106. PMID:15503711 120. Kreuter M, Sullivan M, Siösteen A. Sexual adjustment after spinal cord injury (SCI) focusing on partner experiences. Paraplegia, 1994, 32:225-235. doi: http://dx.doi.org/10.1038/sc.1994.42 PMID:8022632 121. Kreuter M, Siösteen A, Biering-Sørensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. Journal of Rehabilitation Medicine, 2008, 40:61-69. doi: http://dx.doi.org/10.2340/16501977-0128 PMID:18176739 122. Ville I, Ravaud J-F. Tetrafigap Group. Subjective well-being and severe motor impairments: the Tetrafigap survey on the long-term outcome of tetraplegic spinal cord injured persons. Social Science & Medicine, 2001, 52:369-384. doi: http://dx.doi. org/10.1016/S0277-9536(00)00140-4 PMID:11330772 123. DeJong G, Branch LG, Corcoran PJ. Independent living outcomes in spinal cord injury: multivariate analyses. Archives of Physical Medicine and Rehabilitation, 1984, 65:66-73. PMID:6696605 124. Holicky R, Charlifue S. Ageing with spinal cord injury: the impact of spousal support. Disability and Rehabilitation, 1999, 21:250257. doi: http://dx.doi.org/10.1080/096382899297675 PMID:10381237 125. Berkman AH et al. Sexual adjustment of spinal cord injured veterans living in the community. Archives of Physical Medicine and Rehabilitation, 1978, 59:29-33. PMID:619850 126. Murphy N, Young PC. Sexuality in children and adolescents with disabilities. Developmental Medicine and Child Neurology, 2005, 47:640-644. PMID:16138674 127. Fronek P et al. The effectiveness of a sexuality training program for the interdisciplinary spinal cord injury rehabilitation team. Sexuality and Disability, 2005, 23:51-63. doi: http://dx.doi.org/10.1007/s11195-005-4669-0 128. Post MWM et al. Sexological competence of different rehabilitation disciplines and effects of a discipline-specific sexological training. Sexuality and Disability, 2008, 26:3-14. doi: http://dx.doi.org/10.1007/s11195-007-9068-2 129. Forsythe E, Horsewell JE. Sexual rehabilitation of women with spinal cord injury. Spinal Cord, 2006, 44:234-241. doi: http://dx.doi. org/10.1038/sj.sc.3101844 PMID:16172622 130. Fisher TL et al. Sexual health after spinal cord injury: a longitudinal study. Archives of Physical Medicine and Rehabilitation, 2002, 83:1043-1051. doi: http://dx.doi.org/10.1053/apmr.2002.33654 PMID:12161824 131. Urey JR, Henggeler SW. Marital adjustment following spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1987, 68:69-74. PMID:3813859 132. Sheija A, Manigandan C. Efficacy of support groups for spouses of patients with spinal cord injury and its impact on their quality of life. International Journal of Rehabilitation Research, 2005, 28:379-383. doi: http://dx.doi.org/10.1097/00004356-20051200000015 PMID:16319568 133. Crewe NM, Krause JS. Marital status and adjustment to spinal cord injury. The Journal of the American Paraplegia Society, 1992, 15:14-18. 134. Holmbeck GN, Devine KA. Psychosocial and family functioning in spina bifida. Developmental Disabilities Research Reviews, 2010, 16:40-46. doi: http://dx.doi.org/10.1002/ddrr.90 PMID:20419770 135. Boyer BA et al. Prevalence and relationships of post-traumatic stress in families experiencing pediatric spinal cord injury. Rehabilitation Psychology, 2000, 45:339-355. doi: http://dx.doi.org/10.1037/0090-5550.45.4.339 136. Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta analysis. Journal of Pediatric Psychology, 2002, 27:699-710. doi: http://dx.doi.org/10.1093/jpepsy/27.8.699 PMID:12403860 137. Bellin MH et al. Factors associated with the psychological and behavioural adjustment of siblings of youths with spina bifida. Families, Systems & Health, 2009, 27:1-15. doi: http://dx.doi.org/10.1037/a0014859 PMID:19630441 138. Skowronski E, Hartman K. Obstetric management following traumatic tetraplegia: case series and literature review. Australian and New Zealand Journal of Obstetrics and Gynaecology, 2008, 48:485-491. doi: http://dx.doi.org/10.1111/j.1479828X.2008.00909.x PMID:19032665 139. Jackson AB. Pregnancy and delivery. Sexuality and Disability, 1996, 14:211-219. doi: http://dx.doi.org/10.1007/ BF02590079 140. Alexander CJ, Hwang K, Sipski ML. Mothers with spinal cord injuries: impact on marital, family, and children’s adjustment. Archives of Physical Medicine and Rehabilitation, 2002, 83:24-30. doi: http://dx.doi.org/10.1053/apmr.2002.27381 PMID:11782828 141. Buck FM, Hohmann GW. Personality, behaviour, values and family relations of children of fathers with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1981, 62:432-438. PMID:6456711 142. Quigley MC. Impact of spinal cord injury on the life roles of women. The American Journal of Occupational Therapy, 1995, 49:780786. doi: http://dx.doi.org/10.5014/ajot.49.8.780 PMID:8526223
151
Prospettive Internazionali sulla lesione del midollo spinale
143. Duvdevany I, Buchbinder E, Yaacov I. Accepting disability: the parenting experience of fathers with spinal cord injury. Qualitative Health Research, 2008, 18:1021-1033. doi: http://dx.doi.org/10.1177/1049732308318825 PMID:18650559 144. Aldridge J, Sharpe D. Pictures of young caring. Loughborough, University of Loughborough, 2007. 145. Isaksson G et al. Women’s perceptions of change in the social network after a spinal cord injury. Disability and Rehabilitation, 2005, 27:1013-1021. doi: http://dx.doi.org/10.1080/09638280500030431 PMID:16096255 146. Augutis M et al. Psychosocial aspects of traumatic spinal cord injury with onset during adolescence: a qualitative study. The Journal of Spinal Cord Medicine, 2007, 30:S55-S64. PMID:17874688 147. Cornegé-Blokland E et al. Quality of life of children with spina bifida in Kenya is not related to the degree of the spinal defects. Tropical Medicine & International Health, 2011, 16:30-36. doi: http://dx.doi.org/10.1111/j.1365-3156.2010.02680.x PMID:21070514 148. Mukherjee S. Transition to adulthood in spina bifida: changing roles and expectations. TheScientificWorldJournal, 2007, 7:18901895. doi: http://dx.doi.org/10.1100/tsw.2007.179 PMID:18060327 149. Thibadeau JK, Ariksson-Schmidt AI, Zabel TA. The National Spina Bifida Program transition initiative: the people, the plan and the process. Pediatric Clinics of North America, 2010, 57:903-910. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.010 PMID:20883880 150. Spina Bifida. Becoming an adult living successfully with spina bifida. SB Preparations (http://www.sbpreparations.com, accessed 24 May 2012). 151. Ridosh M et al. Transition in young adults with spina bifida: a qualitiative study. Child: Care, Health and Development, 2011, 37:866874. doi: http://dx.doi.org/10.1111/j.1365-2214.2011.01329.x PMID:22007987 152. Ruck J, Dahan-Oliel N. Adolescence and young adulthood in spina bifida: self-report on care received and readiness for the future. Topics in Spinal Cord Injury Rehabilitation, 2010, 16:26-37. doi: http://dx.doi.org/10.1310/sci1601-26 153. Bellin MH, Kovacs PJ, Sawin KJ. Risk and protective influences in the lives of siblings of youth with spina bifida. Health & Social Work, 2008, 33:199-209. doi: http://dx.doi.org/10.1093/hsw/33.3.199 PMID:18773795 154. Webster G, Hindson LM. The adaptation of children to spinal cord injury of a family member: the individual’s perspective. SCI Nursing, 2004, 21:82-87. PMID:15553078 155. Gerschick TJ, Miller AS. Coming to terms: masculinity and physical disability. In: Sabo DF, Gordon DF, eds. Men’s health and illness: gender, power, and the body. Thousand Oaks, CA, Sage Publications, 1995 183–204. 156. Buchanan KM, Elias LJ. Psychological distress and family burden following spinal cord injury: concurrent traumatic brain injury cannot be overlooked. Axone (Dartmouth, N.S.), 2001, 22:16-17. PMID:14625968 157. Post MW et al. Predictors of health status and life satisfaction in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1998, 79:395-401. doi: http://dx.doi.org/10.1016/S0003-9993(98)90139-3 PMID:9552104 158. Charlifue S, Gerhart K. Changing psychosocial morbidity in people aging with spinal cord injury. NeuroRehabilitation, 2004, 19:1523. PMID:14988584 159. Livneh H, Antonak RF. Psychosocial adjustment to chronic illness and disability. Gaithersburg, MD, Aspen Publishers, 1997. 160. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http://dx.doi. org/10.1038/sc.2011.182 PMID:22270190 161. Krause JS. Aging, life satisfaction, and self-reported problems among participants with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2010, 15:34-40. doi: http://dx.doi.org/10.1310/sci1503-34 162. Moos RH, Holahan CJ. Adaptive tasks and methods of coping with illness and disability. In: Martz E, Livneh H, eds. Coping with chronic illness and disability: theoretical, empirical and clinical aspects. New York, NY, Springer, 2007. 163. van Leeuwen CMC et al. Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review. Spinal Cord, 2012, 50:174-187. PMID:22042298 164. van Lankveld W, van Diemen T, van Nes I. Coping with spinal cord injury: tenacious goal pursuit and flexible goal adjustment. Journal of Rehabilitation Medicine, 2011, 43:923-929. PMID:21947183 165. Chappell P, Wirz S. Quality of life following spinal cord injury for 20−40 year old males living in Sri Lanka. Asia Pacific Disability Rehabilitation Journal, 2003, 14:162-178. 166. Salick EC, Auerbach CF. From devastation to integration: adjusting to and growing from medical trauma. Qualitative Health Research, 2006, 16:1021-1037. doi: http://dx.doi.org/10.1177/1049732306292166 PMID:16954523 167. Chau L et al. Women living with a spinal cord injury: perceptions about their changed bodies. Qualitative Health Research, 2008, 18:209-221. doi: http://dx.doi.org/10.1177/1049732307312391 PMID:18216340 168. Slivinski J, Mehta S, Teasell RW. Depression following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010. 169. Orenczuk S et al. Depression following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010.
152
Capitolo 6 Atteggiamenti, relazioni ed adattamento
170. Mehta S et al. An evidence-based review of the effectiveness of cognitive behavioral therapy for psychosocial issues post-spinal cord injury. Rehabilitation Psychology, 2011, 56:15-25. doi: http://dx.doi.org/10.1037/a0022743 PMID:21401282 171. King C, Kennedy P. Coping effectiveness training for people with spinal cord injury. The British Journal of Clinical Psychology, 1999, 38:5-14. doi: http://dx.doi.org/10.1348/014466599162629 PMID:10212733 172. Kennedy P et al. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. The British Journal of Clinical Psychology, 2003, 42:41-52. doi: http://dx.doi.org/10.1348/014466503762842002 PMID:12675978 173. Duchnick JJ, Letsch EA, Curtiss G. Coping effectiveness training during acute rehabilitation of spinal cord injury/dysfunction: a randomized clinical trial. Rehabilitation Psychology, 2009, 54:123-132. doi: http://dx.doi.org/10.1037/a0015571 PMID:19469601 174. Sin NL, Lyubomirsky S. Enhancing well-being and alleviating depressive symptoms with positive psychology interventions: a practice-friendly meta-analysis. Journal of Clinical Psychology, 2009, 65:467-487. doi: http://dx.doi. org/10.1002/jclp.20593 PMID:19301241 175. Peter C et al. Psychological resources in spinal cord injury: a systematic literature review. Spinal Cord, 2012, 50:188-201. doi: http:// dx.doi.org/10.1038/sc.2011.125 PMID:22124343 176. Zahl ML et al. SCI/D forum to increase active living: the effect of a self-efficacy and self-affirmation based SCI/D forum on active living in adults with spinal cord injury/disease. SCI Psychosocial Process, 2008, 21:5-13. 177. Rose A et al. The effect of a self-efficacy based forum on life satisfaction for individuals with spinal cord injury or disease. Annual in Therapeutic Recreation, 2008, 16:49-56. 178. Kennedy P, Taylor N, Hindson L. A pilot investigation of a psychosocial activity course for people with spinal cord injuries. Psychology Health and Medicine, 2006, 11:91-99. doi: http://dx.doi.org/10.1080/13548500500330494 PMID:17129898 179. Latimer AE, Ginis KAM, Arbour KP. The efficacy of an implementation intention intervention for promoting physical activity among individuals with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology, 2006, 51:273-280. doi: http:// dx.doi.org/10.1037/0090-5550.51.4.273 180. Arbour-Nicitopoulos KP, Ginis KA, Latimer AE. Planning, leisure-time physical activity, and coping self-efficacy in persons with spinal cord injury: a randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 2009, 90:2003-2011. doi: http:// dx.doi.org/10.1016/j.apmr.2009.06.019 PMID:19969161 181. Tate DG, Forchheimer M. Enhancing community reintegration after inpatient rehabilitation for persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 1998, 4:42-55. doi: http://dx.doi.org/10.1310/FK0R-2K94-BN99-52FY 182. Wiles R, Cott C, Gibson BE. Hope, expectations and recovery from illness: a narrative synthesis of qualitative research. Journal of Advanced Nursing, 2008, 64:564-573. doi: http://dx.doi.org/10.1111/j.1365-2648.2008.04815.x PMID:19120569 183. Kortte KB et al. Positive psychological variables in the prediction of life satisfaction after spinal cord injury. Rehabilitation Psychology, 2010, 55:40-47. doi: http://dx.doi.org/10.1037/a0018624 PMID:20175633 184. Payne JA. The contribution of group learning to the rehabilitation of spinal cord injured adults. Rehabilitation Nursing, 1993, 18:375-379. doi: http://dx.doi.org/10.1002/j.2048-7940.1993.tb00792.x PMID:7938893 185. House LA et al. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives. Spinal Cord, 2009, 47:882-886. doi: http://dx.doi.org/10.1038/sc.2009.64 PMID:19528994 186. SCIA. Spinal Cord Injuries Australia (http://scia.org.au, accessed 5 April 2013). 187. Killeen G. Taxi discrimination complaint settled. Accord, Winter 2011, pp. 10−11 (http://scia. org.au/images/SCIA-media/publications/accord/Accord%202011%20Winter.pdf?bcsi_ scan_97961A1EAF8C426F=x54bUmSQODtKN2kJiJYmnwwV7N5VAAAAtIQqDg==&bcsi_scan_filename=Accord%202011%20 Winter.pdf, accessed 20 February 2012). 188. ESCIF. European Spinal Cord Injury Federation (http://www.escif.org/, accessed 20 March 2012). 189. GSCICN. Global Spinal Cord Injury Consumer Network (http://globalsci.net/, accessed 19 April 2012). 190. Livability Ireland (http://www.livability.ie, accessed 17 April 2013). 191. Motivation. Freedom through mobility (http://www.motivation.org.uk, accessed 26 April 2013). 192. Gilson SF, Tusler A, Gill C. Ethnographic research in disability identity: self-determination and community. Journal of Vocational Rehabilitation, 1997, 9:7-17. doi: http://dx.doi.org/10.1016/S1052-2263(97)00017-2 193. Campbell J, Oliver M. Disability politics: understanding our past, changing our future. London, Macmillan, 1996. 194. Ville I et al. Disability and a sense of community belonging. A study among tetraplegic spinal-cord-injured persons in France. Social Science & Medicine, 2003, 56:321-332. doi: http://dx.doi.org/10.1016/S0277-9536(02)00030-8 PMID:12473317 195. Manns PJ, Chad K. Determining the relation between quality of life, handicap, fitness, and physical activity for persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1566-1571. doi: http://dx.doi.org/10.1016/S00039993(99)90331-3 PMID:10597807 196. Monnazzi G. Paraplegics and sports: a psychological survey. International Journal of Sport Psychology, 1982, 13:85-95.
153
Prospettive Internazionali sulla lesione del midollo spinale
197. Hanson CS, Nabavi D, Yuen HK. The effect of sports on level of community integration as reported by persons with spinal cord injury. The American Journal of Occupational Therapy, 2001, 55:332-338. doi: http://dx.doi.org/10.5014/ ajot.55.3.332 PMID:11723975 198. Madorsky JGB, Madorsky A. Wheelchair racing: an important modality in acute rehabilitation after paraplegia. Archives of Physical Medicine and Rehabilitation, 1983, 64:186-187. PMID:6838349 199. McVeigh SA et al. Influence of sport participation on community integration and quality of life: a comparison between sport participants and non-sport participants with spinal cord injury. The Journal of Spinal Cord Medicine, 2009, 32:115124. PMID:19569458 200. Martin Ginis KA et al. Physical activity and subjective well-being among people with spinal cord injury: a meta-analysis. Spinal Cord, 2010, 48:65-72. doi: http://dx.doi.org/10.1038/sc.2009.87 PMID:19581918 201. Slater D, Meade MA. Participation in recreation and sports for persons with spinal cord injury: review and recommendations. NeuroRehabilitation, 2004, 19:121-129. PMID:15201471 202. Tasiemski T, Brewer BW. Athletic identity, sport participation and psychological adjustments in people with spinal cord injury. Adapted Physical Activity Quarterly; APAQ, 2011, 28:233-250. PMID:21725116 203. Anneken V et al. Influence of physical exercise on quality of life in individuals with spinal cord injury. Spinal Cord, 2010, 48:393399. doi: http://dx.doi.org/10.1038/sc.2009.137 PMID:19841634 204. Wu SK, Williams T. Factors influencing sport participation among athletes with spinal cord injury. Medicine and Science in Sports and Exercise, 2001, 33:177-182. doi: http://dx.doi.org/10.1097/00005768-200102000-00001 PMID:11224802 205. Cooper M. Come, fly with me! Sports N’Spokes, 2004, 30:8-13. 206. Martin B. Bike on! Sports N’Spokes, 2001, 27:43-49. 207. Thompson M. Flip pin’out. Sports N’Spokes, 1999, 25:16-18. 208. Motivation. The affordable, quality sports wheelchair 2011. (http://www.motivation.org.uk/sports/sports-wheelchair, accessed 14 April 2011).
154
Capitolo 7 Lesione midollare e ambienti accessibili
“Dopo alcuni mesi in ospedale ed un po’ di riabilitazione, ho incontrato parecchie sfide al mio ritorno in comunità. Primo, non potevo arrivare al mio posto di lavoro, il quale era al terzo piano di un palazzo a cinque piani. Non potevo più usare le scale e non c’erano ascensori. Secondo, non avevo accesso a molti servizi a causa del modo in cui sono stati costruiti gli edifici nella mia comunità. Ho dovuto percorre lunghe distanze per cercare luoghi accessibili per avvalermi dei servizi. Ho perso la mia macchina quando mi hanno sparato, e quindi dovevo contare sui mezzi pubblici, e molti degli operatori non erano propensi ad accomodare una persona nella carrozzina. Molto deve essere fatto dal governo per far rispettare le leggi da queste parti.” (Robert, Uganda) “L’accessibilità agli ospedali era un altro problema. Mentre tutti i grandi ospedali erano accessibili alle carrozzine, le cliniche come quelle dentistiche, oculistiche, etc. non lo erano. Alcune erano perfino al secondo o terzo piano di palazzi senza ascensori. In questi casi, spesso sono stato portato nella mia carrozzina su per le scale, il che è un’avventura difficile e pericolosa, ma ho dovuto farlo svariate volte. I bagni in molti ospedali non erano accessibili ai disabili. Immagino che l’atteggiamento verso la mancanza di bagni accessibili era: ‘Non ci sono molti pazienti con la Lesione Midollare, quindi perché sprecare spazio?’” (Alexis, India) “Quando esco per fare qualcosa con la mia carrozzina elettrica, potrei prendere un taxi, o i mezzi di trasporto pubblici, o un treno ad alta velocità. Tuttavia, queste opzioni sono costose anche con lo sconto riservato alle persone disabili. Ci sono solo alcuni autobus pubblici con sistemi di elevazione, e bisogna prenotarli con una settimana di anticipo. Quindi in caso di un’emergenza, non si può fare affidamento per il trasporto all’uso degli autobus pubblici. Inoltre, solo alcune linee hanno fermate senza scalini. Per questo motivo, normalmente prendo il taxi per muovermi e la tariffa è molto costosa.” (Co-Han Yee, Taiwan, China) “Per me è molto difficile uscire di casa. I marciapiedi sono molto irregolari ed in cattive condizioni. Dipendo sempre dagli altri per muovermi. I mezzi pubblici nella zona della città dove vivo sono in cattive condizioni ed è molto difficile per me prenderli, anche con aiuto. Non riesco ad essere indipendente. Come posso essere partecipe della società in questo modo! Mi sento frustrato, faccio uso di cocaina e marijuana e suono la chitarra.” (Diego, Argentina) Ho ricostruito la mia casa dopo il terremoto visto che la casa originale era totalmente distrutta. Ma io e la mia famiglia non avevamo nessuna idea di come rendere l’ambiente agevole per i miei spostamenti. L’ONG ha adattato il bagno e la cucina per facilitare i miei movimenti. Prima dell’adattamento non potevo nemmeno andare al bagno, ma ora posso farmi il bagno da solo. Posso cucinare da seduto nella carrozzina. Tutto è comodo e non trovo grandi problemi quando sono a casa.” (Chen, Cina)
7
Lesione midollare e ambienti accessibili Gli ambienti fisici possono facilitare la partecipazione delle persone con lesione midollare (PLM) o agire come barriere alla partecipazione. L’accessibilità è uno dei principi generali trasversali riportati nell’Articolo 3 della Convenzione delle Nazioni Unite sui diritti delle persone con disabilità (CRPD) mentre l’Articolo 9 sottolinea specificamente l’importanza dell’accessibilità, includendo edifici e trasporti (1). L’accessibilità assicura il diritto di vivere indipendentemente nella comunità (Articolo 19) e di partecipare pienamente in tutte le attività della vita; non garantire l’accessibilità potrebbe costituire una discriminazione. Questo capitolo focalizza l’attenzione sugli alloggi, sui trasporti e sugli adattamenti pubblici necessari a raggiungere questi risultati. L’ambiente fisico ed i trasporti sono tra le barriere più rilevanti per le PLM (2–6). I dati sugli effetti di questi fattori sulla partecipazione sono ancora scarsi (7). Le misure di accessibilità devono rispondere alla serie di bisogni delle PLM: rendere la propria casa accessibile alla carrozzina è vitale, ma se l’accessibilità finisce sulla porta d’ingresso e l’individuo non può muoversi nella comunità, usare i mezzi di trasporto e partecipare all’istruzione, all’occupazione o ad altre attività sociali, allora l’ambiente resta una barriera. Le strategie di accessibilità sono limitate dai costi e dalle risorse umane, ma i miglioramenti incrementali sono sempre possibili (8). Per i paesi che hanno ratificato la CRPD, è necessario dimostrare i progressi verso l’accessibilità completa secondo il concetto di “progressiva realizzazione”. Assicurare l’accessibilità per le PLM rende più facile, anche per tutti gli altri, destreggiarsi bene nel mondo.
Barriere che incontrano le PLM La reintegrazione nella comunità dipenderà dalla misura in cui una PLM può superare le barriere ambientali. In quesata sezione, le barriere ambientali vengono esaminate progressivamente, iniziando con gli alloggi – a cui una persona colpita da poco dalla LM deve ritornare dopo la riabilitazione – poi continuando con i trasporti, che sono vitali per partecipare nella comunità, e terminando con gli edificipubblici – come scuole e luoghi di lavoro – dove è necessario l’accesso viene richiesta l’accessibilità nel rispetto dei diritti all’istruzione ed all’occupazione. 157
Prospettive Internazionali sulla lesione del midollo spinale
Alloggi La propria casa è l’ambiente più importante nella vita (9–11). Per gli adulti con LM, lasciare l’ospedale riabilitativo potrebbe essere difficile se le loro case hanno barriere come scale, bagni piccoli e cucine inaccessibili (12–14), che li rendono a tutti gli effetti “prigionieri nella propria casa” (15). Il risultato potrebbe essere quello che spesso viene chiamato “occupazione posti letto,” dove i pazienti sono pronti per tornare a casa, ma sono costretti a rimanere in ospedale a causa di alloggi insufficientemente accessibili (16,17). Il bisogno non soddisfatto di alloggi accessibili è un problema globale per le persone con disabilità, in particolare per coloro che hanno menomazioni motorie come la LM, anche se i dati disponibili sono pochi. Le evidenze ricavate da sondaggi svolti in Sud Africa dimostrano che le persone con disabilità normalmente vivono in alloggi scadenti rispetto a quelli delle persone non disabili (18). Gli studi provenienti da diverse regioni del mondo suggeriscono che, nella maggior parte dei paesi a basso reddito, le persone con restrizioni varie e motorie hanno limitazioni nella mobilità a casa, anche se è da notare che vivere insieme alle famiglie è normale per tutti in questi contesti (19,20). Anche nei paesi dove i livelli delle case di proprietà sono elevati, il supporto finanziario per l’adattamento degli alloggi può essere inadeguato (21). Nel Regno Unito, ad esempio, una ricerca ha dimostrato che l’apporto per le persone con disabilità è insufficiente in termini di alloggi accessibili e di finanziamenti per i costi di adattamento (22–24). È stato stimato che circa 78 000 utilizzatori di carrozzine nel Regno Unito hanno bisogni d’alloggio non soddisfatti (25). Se una PLM non può permettersi una casa di proprietà, e se vivere con i familiari non è un’opzione, gli alloggi sociali potrebbero essere un’alternativa (26, 27). In Europa l’approvvigionamento spazia da meno del 2% del totale degli alloggi (Estonia, Grecia, Spagna), fino al 35% (Paesi Bassi) (28). La domanda per gli alloggi 158
sociali è generalmente molto maggiore dell’offerta (26). Anche quando gli alloggi sociali sono disponibili, raramente sono sufficientemente accessibili. Questa carenza permane anche quando gli alloggi sociali gestiscono una quota dedicata alle persone con disabilità, nei paesi come El Salvador, India e Thailandia (19,20). Ironicamente, gli alloggi sociali accessibili sono spesso occupati da persone senza disabilità: in Inghilterra solo il 22% delle case con standard per carrozzine sono affittate a famiglie con utenti di carrozzine (25).
Trasporti L’accesso ai trasporti è necessario per partecipare all’istruzione, all’occupazione ed alle attività sociali fuori casa. I trasporti pubblici sono spesso inaccessibili alle PLM (6,29). Rampe, sistemi di elevazione e sistemi di blocco per la sicurezza potrebbero essere assenti, non mantenuti o non efficienti, ed il personale dei trasporti potrebbe non essere istruito sulle caratteristiche della funzione di accessibilità (31). Negli autobus a percorso fisso e nei sistemi ferroviari la destinazione desiderata potrebbe non essere vicina alle fermata dell’autobus o del treno (30). I sistemi pubblici di trasporto che operano su richiesta, come i taxi accessibili alle carrozzine, potrebbero richiedere di un appuntamento fissato diversi giorni di anticipo, riducendo così la flessibilità (30). Un veicolo proprio potrebbe essere un’alternativa se esistono risorse a sufficienza (economiche e tecniche), in quanto i costi per la modifica dei sistemi di guida o degli adattamenti del veicolo possono essere proibitivi. Gli aeroporti e le compagnie aeree dovrebbero avere disposizioni che assicurino alle PLM la possibilità di volare. Tuttavia i bagni sugli aerei sono spesso inaccessibili e, in alcuni casi, vi sono regolamenti che impediscono agli individui che non possono muoversi indipendentemente di viaggiare da soli (32). Alla base di questi problemi pratici ci sono fallimenti sistemici. Ad esempio, una rottura nella “catena del viaggio” (ovvero quando una parte del tragitto non è accessibile) può voler dire che gli
Capitolo 7 Lesione midollare e ambienti accessibili
utenti di carrozzine non possono raggiungere la loro destinazione (33). Anche dove le leggi impongono esplicitamente l’accessibilità alla mobilità per i trasporti pubblici, queste potrebbero non essere efficaci, soprattutto nei paesi in via di sviluppo, perché le risorse per metterle in atto sono insufficienti (34). Se le normative richiedono che quando si comprano nuovi taxi a furgoncino siano accessibili alle persone con disabilità, la compagnia potrebbe evitare tali normative acquistando solo furgoncini usati (35). Visto che i taxi ed i minibus accessibili su i paratransit (mezzi di trasporto per persone con disabilità)/servizi speciali di trasporto sono costosi da acquistare, potrebbe essere una sfida rendere il servizio redditizio e sostenibile (35–37).
Edifici pubblici L’inaccessibilità degli edifici pubblici può ostacolare la partecipazione delle PLM (38,39). Gli studi dimostrano che le cinque aree maggiori in cui l’accessibilità è fondamentale per la partecipazione degli utenti in carrozzina sono il parcheggio, i percorsi d’accesso agli edifici pubblici, le rampe, gli ingressi ed i bagni/WC (40,41). Per esempio, un sondaggio nel Sud Africa ha trovato che meno del 10% degli ospedali aveva WC pienamente accessibili alle persone con disabilità (42). Le porte sono spesso troppo pesanti per essere aperte dalle PLM, potrebbero mancare: i corrimani – essenziali per le PLM che possono camminare con le stampelle – e inoltre marciapiedi irregolari o selciati, percorsi stretti, terreni ripidi e la mancanza di cordoli a scivolo possono compromettere l’accessibilità agli alloggi pubblici per le persone in carrozzina (43–45). Gli attraversamenti stradali ed i pavimenti/marciapiedi non sicuri contribuiscono all’elevato tasso di infortuni causati dai veicoli nei confronti degli utenti in carrozzina (46–48). Il progresso nell’affrontare problemi di accessibilità è spesso poco uniforme. In alcune città degli Stati Uniti, i tassi di conformità per gli edifici costruiti dopo il 1980 erano molto elevati – 97%
in una città (49). Altrove, però, come in Turchia, negli Emirati Arabi Uniti e nello Zimbabwe, i tassi sono meno della metà, ed il progresso verso l’accessibilità è segnalato come molto lento (50–52). In alcuni casi la situazione è terribile: in Ibadan, Nigeria, meno del 18% degli edifici pubblici sono stati rilevati come accessibili alle carrozzine (53), mentre a Bangkok, Thailandia, un sondaggio ha trovato che quasi nessun edificio pubblico o privato era pienamente accessibile agli utenti di carrozzine (54). Come con i trasporti, non è sufficiente avere leggi, politiche e standard se poi non vengono applicati. In un sondaggio recente di 36 paesi in Asia e nel Pacifico, 25 avevano normative riguardanti l’accessibilità agli edifici pubblici ed ai trasporti, eppure nessuna di queste leggi e standard erano obbligatori o supportati da meccanismi per applicarli (55). Un sondaggio delle Nazioni Unite tra 114 paesi, ha trovato che, mentre quasi la metà aveva politiche di accessibilità per gli edifici pubblici, la maggior parte non aveva programmi educativi pubblici per spiegare l’accessibilità e molti non avevano assegnato risorse finanziarie per implementare le politiche o non avevano alcuna agenzia ufficiale per far applicare o monitorare tali politiche (1). In tutti gli ambiti, i fattori che intralciano l’accessibilità sono: ■ l’assenza di quadri normativi e di standard d’accessibilità; ■ la mancanza dei meccanismi di applicazione; ■ la mancanza di risorse finanziarie o politiche di appalti pubblici incentrata sull’accessibilità; ■ limitazioni istituzionali (come la mancanza di cooperazione fra agenzie pubbliche e private, o la capacità inadeguata di pianificare); ■ una mancanza generale di consapevolezza della necessità e dei benefici della accessibilità a tutti i livelli; ■ l’assenza della partecipazione degli utenti nello sviluppo e nell’implementazione delle politiche.
159
Prospettive Internazionali sulla lesione del midollo spinale
Affrontando le barriere Quasi tutte le barriere che affrontano quotidianamente le PLM nell’ambiente fisico, nei trasporti ed in altri servizi e strutture che sono aperti o disponibili al pubblico, sia negli ambienti rurali che in quelli urbani, possono essere affrontate. Inoltre, per fare ciò sono disponibili buone prassi innovative ed economicamente fattibili.
Misure trasversali Le seguenti misure sono rilevanti in tutti i contesti ambientali degli alloggi, dei trasporti e degli edifici pubblici. L’impiego della progettazione universale ha il potenziale non solo di assicurare l’accesso per le persone con disabilità, ma anche di beneficiare le persone anziane, i genitori ed altri che hanno difficoltà con la mobilità negli edifici, con i trasporti e nella comunità (14, 33). Lo sviluppo degli standard di accessibilità può assicurare l’accesso per persone che usano le carrozzine, incluse le PLM. La CRPD richiede agli Stati Membri di sviluppare, promulgare e monitorare l’implementazione dei minimi standard per l’accomodamento pubblico (1). Questi dovrebbero includere, per gli utenti di carrozzine, l’accesso agli edifici – cordoli a scivolo, attraversamenti pedonali sicuri, ed ingressi accessibili – insieme all’accessibilità all’interno degli edifici, in particolare nei bagni. Nonostante la rimozione degli ostacoli maggiori faccia una notevole differenza per le persone nelle carrozzine, la piena accessibilità dovrebbe sempre rimanere l’obiettivo. Gli standard dettagliati sono prontamente disponibili nazionalmente ed internazionale (ad es. (41,56)). Questo include sempre di più i contesti a basso e medio reddito. In Uganda, ad esempio, il Sindacato Nazionale delle Persone Disabili d’Uganda insieme al Ministero del Genere, Lavoro e Sviluppo Sociale hanno prodotto standard per l’accesso (57). Gli standard potrebbero necessitare di una revisione per rispondere ai cambiamenti tecnologici ed
ai bisogni (ad es. il design della carrozzina, la diffusione incrementale dell’obesità). L’applicazione degli standard di accessibilità. Negli Stati Uniti, gli standard facoltativi sono stai creati dalla legge nel 1961, ma si sono subito dimostrati inefficaci e furono sostituiti da standard obbligatori nel 1968 (58), i quali furono rafforzati una decina di anni dopo da una procedura nella quale gli individui potevano denunciare gli edifici pubblici che erano inaccessibili. Questo approccio è stato rafforzato ulteriormente dalle disposizioni del Americans with DisabilitiesAct (1990) [Legge sugli Americani con Disabilità (1990)]. Adesso i comuni e le imprese adesso incorporano l’accessibilità nei loro piani per le nuove costruzioni per evitare possibili denunce. L’applicazione necessita di un’agenzia responsabile o un altro punto di contatto per monitorare la conformità con gli standard. Coinvolgimento delle PLM, insieme ad altri gruppi con disabilità, nel dare priorità agli investimenti per promuovere e monitorare i risultati dell’accesso. Le persone con disabilità dovrebbero essere coinvolte nello sviluppo degli standard, nell’accesso alla valutazione, nella ricerca della conformità (ad es. (59)), nel monitoraggio dell’accesso e nelle campagne per i miglioramenti (60). Il Council of Canadians with Disabilities [Consiglio dei Canadesi con Disabilità], ad esempio, ha lavorato per circa 30 anni con città e province per monitorare l’implementazione degli standard d’accessibilità e per dare consigli su questioni comei i requisiti di spazio per l’uso delle carrozzine negli edifici (61). In America Latina, le organizzazioni delle persone con disabilità, come Libre Acceso Messicano e il Brazil’s Center for Independent Living [Centro Brasiliano per Vivere Indipendentemente], hanno attivamente fatto campagne per l’accessibilità nei trasporti, partecipato nello sviluppo e nella promulgazione delle linee guida sull’accessibilità, ed hanno promosso il loro utilizzo (62). In Giappone e negli Stati Uniti le persone con disabilità hanno svolto un ruolo chiave nel monitorare l’implementazione
160
Capitolo 7 Lesione midollare e ambienti accessibili
dell’accessibilità attraverso le valutazioni e i contributi alle consultazioni (63). Formazione per le parti interessate ai problemi di accessibilità che incontrano le persone con disabilità. La consapevolezza e la conoscenza dell’accessibilità nella sfera pubblica è vitale. La formazione sulla consapevolezza e sulla parità dei diritti delle persone con disabilità aiuta a cambiare gli atteggiamenti e migliora il rispetto nei confronti delle persone con disabilità che utilizzano le strutture. Informazioni tecniche di base sui bisogni e sulle soluzioni dell’accessibilità sono utili per coloro che sviluppano e fanno rispettare le politiche. I corsi di formazione universitari e continuativi per architetti, ingegneri e progettisti dovrebbero includere la conoscenza dei principi e delle pratiche di progettazione universale e dell’accessibilità come elementi standard dei corsi (60). Ad esempio, dal passaggio nel 2008 del Malaysia’sPeople with DisabilitiesAct(Legge Malesiana per Persone con Disabilità) le università malesiane sono state incoraggiate ad introdurre corsi di “architettura senza barriere” che incoraggiano la ricerca, la disseminazione di soluzioni di accessibilità e aumentano la consapevolezza pubblica. In Colombia, l’Università Nazionale ha preparato un manuale sull’accessibilità dell’ambiente edificato e dei mezzi di trasporto (19). Enti privati che offrono strutture e servizi che sono aperti o disponibili al pubblico devono prendere in considerazione tutti gli aspetti dell’accessibilità per persone con disabilità. Industrie commerciali coinvolte nella costruzione e nell’arredamento di case dovrebbero essere incoraggiate ad implementare i principi di progettazione universale nei loro progetti e nei loro processi di sviluppo, nonché a condividere queste informazioni con chi formula le politiche a livello nazionale (64,65). Ulteriore ricerca è necessaria su ciò che funziona per migliorare l’accessibilità. Nonostante la competenza nella progettazione universale, ci sono ancora lacune nella conoscenza di ciò che funziona per migliorare l’accessibilità in tutti i contesti, dalle case alle comunità. Poco è noto su
come esattamente l’ambiente fisico limita, e come può essere modificato per facilitare la partecipazione delle persone con disabilità (6,7,66–69). Sebbene ci siano stati dei progressi significativi, fra le priorità di ricerca più urgenti si trova il bisogno di uno strumento affidabile e valido per valutare lamisura in cui l’ambiente edificato costituisce una barriera per persone con limitata mobilità (3,68,70–74). La valutazione e la stima della misura di inaccessibilità (69) costituiscono il primo passo verso un approccio basato sulle prove per lo sviluppo degli standard. Sono inoltre necessarie prove per mostrare i benefici economici e sociali di rendere gli ambienti accessibili.
Alloggio Le soluzioni alle barriere degli alloggi devono includere le modifiche degli alloggi esistenti (compresa l’edilizia sociale) e la costruzione di nuovi alloggi accessibili. Le modifiche appropriate delle case per le PLM hanno un ampio raggio di benefici sociali. Gli adattamenti delle case consentono alle PLM di lasciare gli ospedali ed altri contesti sanitari costosi. Inoltre, possono ridurre lo sforzo degli assistenti, prevenire infortuni, migliorare la salute generale ed il funzionamento, e ridurre l’esclusione sociale (14,75–78). Le modifiche dell’ambiente di casa per facilitare il funzionamento possono variare ampiamente e potrebbero cambiare nel tempo. Strutture basilari possono includere rampe, superfici del pavimento con poco attrito e piani di lavoro abbassati. Modifiche più costose possono includere montascale o ascensori, ed un citofono o altri sistemi di controllo (77). La valutazione nel tempo delle interazioni tra la persona e l’ambiente potrebbe essere necessaria per massimizzare il funzionamento in casa (79). È importante soddisfare sempre le norme culturali per rendere gli alloggi desiderabili ed evitare uno “stile-istituzionale” come soluzione di design (24).
161
Prospettive Internazionali sulla lesione del midollo spinale
Modificare alloggi esistenti può essere conveniente. Uno studio in Svezia di PLM ha trovato che fino al 30% dei trasferimenti a case di cura potevano essere evitati se gli alloggi fossero stati resi accessibili (80), un risultato che è stato riprodotto in Inghilterra (81). È stato dimostrato che fornire agli occupanti proprietari, locatori e locatari “sovvenzioni per servizi ai disabili” per finanziare le modifiche delle case in tutto il Regno Unito è conveniente quando viene paragonato con i costi di trasferire gli individui ad altre modalità di vita (82). In Canada, il ResidentialRehabilitation Assistance Program for Persons with Disabilities [Programma di Assistenza Residenziale Riabilitativa per Persone con Disabilità], amministrato dalla Società Canadese per Mutui e Alloggi, offre assistenza finanziaria per permettere ai proprietari ed ai locatori di pagare per il miglioramento dell’accesso alle loro proprietà (83). L’informazione è necessaria per promuovere gli alloggi accessibili. Negli Stati Uniti, l’Università di Stato del Colorado ha prodotto opuscoli tecnicamente dettagliati ed un sito web che possono essere utilizzati dai costruttori per conoscere i requisiti spaziali ed altri dettagli per la ristrutturazione della casa in funzione della carrozzina (84). Le risorse disponibili dai programmi del Community-basedRehabilitation (CBR) [Riabilitazione su base comunitaria] in India, che utilizzano le linee guida per l’assistenza sanitaria e per l’integrazione nella comunità dopo la LM prodotte dal Governo Indiano e dal OMS Community-basedrehabilitation: CBR guidelines[Riabilitazione con base comunitaria: linee guida CBR] (85), forniscono informazioni basilari sulle modifiche poco costose per la casa e semplici suggerimenti per migliorare l’accesso in contesti a basso reddito. Collaborazione tra governo, organizzazioni per la disabilità, ed il settore privato (a scopo di lucro e senza fini di lucro) possono aiutare a rendere gli alloggi accessibili. Dal 1997, il National Cooperative Housing Union [Sindacato Nazionale della Cooperativa Alloggi] in Kenya ha collegato il governo, i gruppi per la disabilità ed il settore 162
privato per identificare terreni disponibili ed ha fornito assistenza tecnica e prestiti di capitale per facilitare la costruzione di alloggi accessibili (86). La ricostruzione nello Sri Lanka dopo il terremoto e lo tsunami del 2004 dell’Oceano Indiano è stato un altro esempio che mostra come gli alloggi possono essere resi accessibili per persone con bassi redditi quando i diversi settori collaborano (vedi Riquadro 7.1). Nuove costruzioni accessibili sono molto meno care rispetto alla ristrutturazione di alloggi esistenti e offrono una scelta più ampia. Per aumentare la quantità di alloggi accessibili, è necessario uno sforzo integrato e coordinato tra il settore pubblico e privato che unisce i regolamenti con i finanziamenti, sviluppa un mercato per le case accessibili, incentiva, coordina agenzie, informa e protegge dalla discriminazione (87,88). Le politiche possono aiutare a creare una percentuale di nuove costruzioni accessibili (10,89). Nel Regno Unito, una risposta all’invecchiamento della popolazione – “LifetimeHomes” – ha prodotto abitazioni che soddisfano un ampio raggio di requisiti per la mobilità a costi aggiuntivi minimi (90). Un altro aspetto importante dell’accessibilità degli alloggi, chiamato “visitabilità”, consente alle persone in carrozzina di accedere alle case di parenti o amici i quali potrebbero loro stessi avere o no limitazioni motorie. “Visitabilità” impone caratteristiche come almeno un ingresso senza scalini, ampie porte d’ingresso e bagni al piano terra (91,92). Una serie di meccanismi finanziari possono essere utilizzati per aumentare gli alloggi accessibili. Questi includono incentivi fiscali e prestiti a basso interesse ai costruttori privati di progetti di case per incoraggiarli a costruire case accessibili – come richiesto dal Fair HousingAct 1988 degli Stati Uniti e legislazioni simili. Sempre negli Stati Uniti, l’HousingAct del 1959 fornisce contributi in conto capitale ad organizzazioni non-profit per coprire i costi per costruire, ristrutturare o comprare le proprietà. La banca di stato norvegese per gli alloggi (NorwegianHousingBank), in funzione del Programma Ciclo di vita degli
Capitolo 7 Lesione midollare e ambienti accessibili
alloggiamenti, offre in maniera analoga prestiti a basso costo ai costruttori per incoraggiarli a costruire case accessibili. Si è ottenuta una maggiore accettazione dal mercato del Ciclo di vita degli alloggiamenti quando è stata associata l’accessibilità alla qualità di design e con l’incoraggiamento delle partnership tra architetti, gruppi per la disabilità e costruttori (80,89). A maggio del 2004, il programma in Oslo ha prodotto 260 873
unità abitative, di cui l’85% sono state occupate da anziani ed il 15% da persone non anziane con disabilità (93). Quando è stato scoperto in seguito che gruppi comunitari erano interessati ad assumere costruttori per gli alloggi accessibili ma non avevano fondi a sufficienza, è stato creato negli Stati Uniti il DisabilityOpportunityFund [Fondo Opportunità per Disabili] nel 2007 per integrare gli incentivi nella legislazione (88).
Riquadro 7.1 Sri Lanka: ripresa in seguito al terremoto e allo tsunami dell’Oceano Indiano nel 2004 Lo tsunami dell’Oceano Indiano nel 2004 è costato decine di migliaia di vite nello Sri Lanka ed ha distrutto innumerevoli edifici. Tuttavia, la ricostruzione ha fornito un’opportunità di sviluppare ambienti più inclusivi. Persone anziane e con disabilità nelle zone rurali dello Sri Lanka spesso trovano difficile muoversi nelle proprie case, e ancor di più nei loro quartieri. Le persone con difficoltà motorie spesso si affidano agli altri per assisterli, cosa che incide sull’indipendenza degli altri familiari compresa la loro capacità di svolgere un’attività professionale a tempo pieno. Non esistono dati statistici affidabili sulla disabilità nello Sri Lanka, ma le decadi di guerra civile hanno aumentato il numero di persone che vivono la disabilità. Dopo lo tsunami, un’organizzazione locale per disabili, in collaborazione con un’organizzazione internazionale, si è impegnata a ricostruire un villaggio distrutto per renderlo come un modello di villaggio inclusivo, assumendo un architetto ed un terapista occupazionale come consulenti per l’accessibilità. Non erano disponibili standard o linee guida nazionali sull’accessibilità e sono state utilizzate le linee guide europee che si sono dimostrate problematiche a causa del loro timbro urbano ed “europeo”. Con risorse finanziarie limitate, sono state completate 55 abitazioni semplici ma adattabili ed un centro sociale accessibile conformi al capitolato emanato dal governo. Sono stati forniti accessi con rampe o accessi con scalini e ringhiere a seconda dei bisogni. All’interno, tutte le case hanno avuto accesso a livello, porte di larghezze minime specifiche, e tutte le camere avevano lo spazio minimo per la rotazione in carrozzina. È stata aggiunta al lato di ogni abitazione una combinazione di servizi igenici e una zona per il lavaggio a livello accessibile. Dove richiesto sono state fornite maniglie e sedie comode da utilizzare sopra il WC o per la doccia. Interruttori, maniglie e rubinetti sono stati tutti allocati entro i limiti specifici di distanza. Prima di costruire, gli abitanti anziani e con disabilità insieme ai loro assistenti erano restii ad accettare il nuovo stile degli alloggi, soprattutto il bagno attaccato, ma dopo erano contenti di avere strutture migliori. Le persone senza restrizioni motorie spesso hanno convertito il bagno attaccato in un’altra stanza da letto e costruito una nuova zona per il lavaggio all’esterno. Il centro sociale, con rampe d’accesso e bagni accessibili, ha consentito alle persone con disabilità, a quelle più anziane con difficoltà motorie ed agli assistenti di partecipare agli eventi comunitari anche se normalmente non venivano coinvolte nelle attività sociali. Sono state imparate importanti lezioni, quali:
■■ La progettazione inclusiva deve tener conto delle circostanze economiche e degli aspetti culturali ■■ L’uso delle linee guide sviluppate per i paesi ad alto reddito potrebbero non essere appropriate in paesi a basso reddito, soprattutto nelle zone rurali. Si possono trovare soluzioni migliori che si adattano alle condizioni locali.
■■ Una attenta supervisione è stata necessaria nella fase di costruzione, in quanto i costruttori non avevano familiarità con gli elementi principali del progetto.
163
Prospettive Internazionali sulla lesione del midollo spinale
Altri meccanismi – come l’etichettare esplicitamente le case come “accessibili” o aggiudicare premi per il design – potrebbero incoraggiare la costruzione degli alloggi accessibili. Etichettare le case come “accessibili” potrebbe essere di aiuto a combattere gli stigma associati con vivere in una casa “speciale” e potrebbe stimolare la domanda dei consumatori. In un progetto abitativo svolto dalla comunità in British Columbia, Canada, ad esempio, il concetto di “flexhousing” (case trasformabili) è stato utilizzato per progettare, ed aumentare la domanda per le case accessibili alle carrozzine nella comunità di Seabird Island (94). Il design del flexhousing consente ai residenti di cambiare facilmente le connessioni fra le camere e la grandezza delle camere per aumentare l’accessibilità. Sono stati assegnati premi nazionali a progettisti ed architetti e premi di servizio comunitario per i progetti di alloggi accessibili che sono stati utilizzati in Australia e nel Regno Unito allo scopo di incoraggiare la costruzione degli alloggi accessibili (89). Migliorare l’edilizia sociale accessibile è importante per le PLM che hanno risorse finanziarie limitate. Il finanziamento complesso ed i requisiti di coordinamento per fornire alloggi sociali o sovvenzionati di alta qualità crea sfide, anche nei paesi più ricchi (26,27). Molti approcci innovativi che rendono l’edilizia sociale accessibile si sono sviluppati nei paesi di tutta l’Europa negli ultimi 20 anni (95–97), spesso grazie all’invecchiamento della popolazione (81). Questi comprendono: In Danimarca una società cooperativa edilizia ha costruito blocchi di appartamenti collegati da aree comuni per persone con difficoltà motorie. Il Governo danese ha finanziato i costi di costruzione, mentre i finanziamenti privati hanno coperto i costi delle strutture aggiuntive per disabili e le autorità locali pagano i costi dell’assistenza sanitaria. Gli “alloggi per i bisogni speciali” (per persone con disabilità, persone anziane e famiglie numerose) costituiscono il 50% della nuova edilizia sociale in Danimarca (98).
In Svezia, è stato costruito un complesso di alloggi a Stoccolma su terreni ex-industriali forniti da un’impresa privata che lavorava con urbanisti per progettare e costruire cooperative di complessi residenziali accessibili con un centro sociale, un asilo, un centro giovanile ed una clinica (96). Nei Paesi Bassi, dal 1997, tutte le nuove abitazioni nel settore privato e nell’edilizia sociale devono essere progettate in conformità con gli standard delle case adattabili stabiliti nel codice edilizio nazionale, il quale presenta aspetti come soglie, requisiti di spazio per le carrozzine, larghezze delle porte, e le altezze delle prese elettriche e delle superfici di lavoro. Il divario tra la domanda del consumatore e l’offerta del governo può essere ridotto attraverso la fornitura delle informazioni.Nel Regno Unito, il Registro Londinese degli Alloggi Accessibili è progettato per incoraggiare i proprietari di strutture edili sociali ad eseguire adattamenti d’accessibilità (91). Il Registro non solo funge da canale d’informazione per le persone che hanno bisogno di alloggi accessibili, ma stabilisce anche i criteri di accessibilità attraverso la categorizzazione dell’edilizia sociale in funzione degli standard dettagliati sull’accessibilità per le carrozzine che riguardano ogni aspetto delle case (99). I registri degli alloggi accessibili sono stati sviluppati anche dai governi locali e dalle organizzazioni per le persone con disabilità in alcune parti del Canada e dell’Australia (100). Approcci simili sono stati sviluppati con successo in Ruanda come parte di un programma estensivo per fornire alloggi accessibili agli ex combattenti ed ai civili con disabilità in seguito al genocidio del 1994 (101). È importante che le soluzioni per gli alloggi non segreghino le persone con disabilità. Perciò, la progettazione universale e l’inclusione di alloggi accessibili all’interno dei contesti residenziali misti sono le soluzioni preferite.
Trasporti I trasporti pubblici utilizzabili sono uno dei facilitatori più importanti per le persone con disabilità
164
Capitolo 7 Lesione midollare e ambienti accessibili
(102). Le politiche dei trasporti dovrebbero essere un componente della strategia nazionale per la disabilità, mentre l’accesso dovrebbe essere parte di ogni strategia nazionale dei trasporti. L’accessibilità dei trasporti viene affrontata al meglio con politiche comprensive che possono essere monitorate da un’agenzia responsabile con la partecipazione delle persone con disabilità. È più efficace e meno costoso costruire accessibilità nei trasporti dall’inizio piuttosto che aggiungerla dopo (8). Le sfide non si limitano a quelle strutturali e finanziarie; sono anche spesso psicologiche – come la paura per la propria sicurezza (34,36,62,103). Le strategie che possono essere utilizzate per promuovere l’accessibilità attraverso una serie di opzioni per il trasporto vengono descritte di seguito.
Servizi di trasporto speciali
Autobus a percorso fisso, tram, metropolitane e sistemi ferroviari
Il rinnovamento di un sistema pubblico esistente presenta problemi tecnici e finanziari (104), come l’assicurare i requisiti spaziali per le carrozzine, superare le differenze di altezza tra i livelli della strada e dei veicoli, e limitare il divario fra il veicolo e la piattaforma (105,106). Gli autobus con sistema di inginocchiamento laterale pneumatico, gli impianti di risalita automatici, gli ascensori e le rampe possono trasformare l’accessibilità. Le metropolitane nelle città più grandi del mondo stanno diventando sempre più accessibili (107), ed i sistemi rapidi di trasporto in città come Calgary, Canada; Pechino, Cina; e Dar es Salaam, Tanzania, hanno implementato i principi di progettazione universale (104,108–110). L’obiettivo dovrebbe essere quello di implementare soluzioni che si interfacciano con la gamma più ampia di difficoltà motorie, invece di affidarsi a soluzioni ad hoc come le rampe pieghevoli o gli impianti di risalita portatili che dipendono dalla disponibilità del personale (111).
Il bisogno di trasporti che siano perfettamente accessibili agli utenti di carrozzina (33,112) ha avviato il movimento di richiedere approcci reattivi, come i servizi di paratransit(mezzi di trasporto per persone con disabilità) trovati in entrabmi i contesti ad alto e basso reddito (113,114). Tuttavia questi servizi di trasporto speciali (STS) possono essere percepiti come “trattamenti speciali” per alcuni, o come troppo costosi o poco sicuri (35,36). Per rispondere a queste percezioni il progetto “Brukslinjen” svedese è stato avviato nel 2001 per avvicinare i comuni rurali ed urbani allo scopo di integrare pienamente il sistema di trasporto esistente – includendo gli autobus scolastici ed altro traffico stradale regolare – con il percorso variabile STS. Il progetto Brukslinjen è stato esteso a tutto il paese (35,37). La Svezia fa molto affidamento sui taxi per STS (35). Una soluzione più tecnologica è stata implementata con RegioTaxi KAN nei Paesi Bassi e l’iniziativa FLIPPER a Bologna in Italia. Entrambi utilizzano un sistema di domanda reattivo basato sulla telemetria in cui i centri di spedizione viaggi usano la prenotazione computerizzata e sistemi automatici di localizzazione del veicolo. Queste informazioni vengono analizzate da un software che ottimizza i percorsi che integra il sistema di paratransitcon il sistema pubblico, taxi privati, ed altri servizi. Utilizzando un singolo voucher, un individuo può ordinare un percorso e poi essere diretto ad una serie di opzioni interdipendenti di trasporto (115).
Taxi, minibus e risciò
Alcune grandi città favoriscono i taxi privati accessibili. La flotta di taxi a Londra, Regno Unito, ad esempio, è accessibile al 75% (circa 24 000 veicoli) (35). Poiché i costi dei taxi accessibili, insieme a quelli per infrastrutture di una rete coordinata, possono essere fuori dalla portata di tutti nei contesti a basso reddito, opzioni a basso costo, come i risciò, i minibus e i taxi a pedali, possono essere adattati economicamente per le persone con disabilità (62). In alcune situazioni, e per le 165
Prospettive Internazionali sulla lesione del midollo spinale
PLM che sono in grado di trasferirsi fuori dalla loro sedia, queste forme di trasporto potrebbero essere una buona opzione. I minibus-taxi nel Sud Africa, i chapa 100 in Mozambico, e i micros in Messico forniscono a tutti una buona mobilita da cordolo a cordolo grazie alla loro dimensione ridotta e alla loro presenza ovunque (62).
Collaborazione tra pubblico e privato
Molte soluzioni di trasporto si affidano alla collaborazione tra pubblico e privato. Quando il settore pubblico affronta tagli e il trasporto pubblico ufficiale degenera, il divario è spesso colmato da taxi privati, minibus o altri servizi veicolari che competono per una fetta del mercato. Uno studio analitico sui trasporti in Georgia, Ghana e Kazakistan ha indicato che una volta che i servizi privati entrano a far parte del mercato dei trasporti, tendono a rimpiazzare il sistema pubblico, ed una volta radicati, fanno resistenza ai regolamenti o all’adesione dei requisiti di accessibilità (116). L’aumento della mobilità dei consumatori in collaborazione con il governo ha avuto successo nell’aumentare i trasporti accessibili nei sistemi Integrati dei Trasporti Veloci a Città del Capo e a Johannesburg, Sud Africa (111), come pure nel Dar es Salaam Progetto Trasporti Veloci nella Repubblica Unita di Tanzania, la quale integra pienamente le reti dei trasporti pubblici con gli operatori privati del paratransit (113). Già negli anni settanta del secolo scorso, il Brasile è divenuto leader nell’implementazione di schemi di priorità per gli autobus ad alto flusso, ma le limitazioni economiche hanno reso difficile il finanziamento di infrastrutture pubbliche nelle città. Tuttavia, invece di abbassare la qualità dei servizi accessibili, stimolati dalle proteste dei gruppi rappresentanti le persone anziane e disabili, le città brasiliane hanno optato per la collaborazione tra pubblico e privato per il trasporto rapido di autobus con piena accessibilità (117).
informato dei trasporti. I sistemi di ritenuta negli autobus sono poco utili se gli operatori non sono stati preparati ad usarli. Gli autisti dei taxi potrebbero avere veicoli accessibili, ma potrebbero ancora evitare le persone in carrozzina a causa della percezione della associata scomodità. Anche i dirigenti ed i politici potrebbero non comprendere l’importanza dell’accessibilità o il bisogno di linee guida ben studiate riguardanti soluzioni di accesso poco costose (108).
Trasporti privati
Per molte persone nei paesi ad alto reddito, i veicoli adattati e di proprietà privata, promuovono la vita indipendente, la partecipazione nella comunità e un maggior grado di soddisfazione di vita (118–120). L’Articolo 20 del CRPD sulla mobilità personale impone l’accesso agli ausili e agli apparecchi per la mobilità per promuovere l’indipendenza, e richiede che il personale sia addestrato e specializzato. Per coloro che possono trasferirsi in macchina, e che hanno una carrozzina che può essere riposta, il costo dei controlli modificati per la guida in un veicolo con cambio automatico può essere relativamente basso. In paesi come Cina, Malaysia, Thailandia e Vietnam, i motocicli adattati sono una soluzione comune più economica per alcune persone con paraplegia (121). Per coloro che non possono trasferirsi in un veicolo, i mezzi accessibili alle carrozzine sono una soluzione più costosa, in particolare per le persone tetraplegiche (122), e potrebbero anche necessitare di un amico o assistente per guidare (30). Ciononostante, innovazioni importanti sono state fatte nei sistemi delle tecnologie assistive in alcuni paesi che offrono possibili soluzioni come sussidi e finanziamenti (123–126). In Finlandia, ad esempio, l’acquisto di veicoli privati adattati è sostenuto da una riduzione dell’imposta.
Istruzione
Edifici pubblici Il successo nel raggiungere l’accessibilità non può essere ridotto ad un solo fattore: leggi applicabili
Il successo di ognuna di queste strategie dipende dalla cooperazione del personale istruito e ben 166
Capitolo 7 Lesione midollare e ambienti accessibili
e buone politiche devono essere unite ad una dirigenza forte, oltre alla collaborazione tra settori, ed un impegno per la progressiva realizzazione di standard di accessibilità appropriati. Le misure strutturali e politiche come le legislazioni, i regolamenti, gli standard e le politiche edilizie sono necessarie per affrontare la sfida complessa ottenere l’accessibilità negli edifici e negli spazi pubblici, nelle strutture private come i centri commerciali, negozi, ristoranti ed hotel. Tuttavia, la volontà politica ed il supporto istituzionale sono anche necessari per riunire questi componenti. É ancora più importante che queste misure vengano applicate. Vi sono studi che mostrano come, anche quando esistono leggi e politiche che sostengono l’accessibilità, se sono volontarie, per la maggior parte, non vengono rispettate (19–21). In paesi come Australia, Canada, Germania, India, Nuova Zelanda, il Regno Unito e gli Stati Uniti, dove i requisiti di accessibilità sono direttamente collegati alle legislazioni antidiscriminatorie con disposizioni per le denunce, una causa vinta da un individuo sulla base di inaccessibilità, può portare a multe o ordinanze del tribunale. Un giovane utente di carrozzina nel Regno Unito ha vinto nel 2007 una somma sostanziale contro una delle banche più grandi perché le sedi della banca erano inaccessibili (127). Sebbene queste vittorie siano importanti, l’applicazione delle leggi antidiscriminatorie ha degli svantaggi. Esporre denuncia è costoso e, anche quando va a buon fine, le vittorie non sempre si traducono in cambiamenti del sistema. Se la legge antidiscriminatoria riconosce la difesa “dell’onere indebito” agli accomodamenti ragionevoli, l’accessibilità cambia da un problema dei diritti umani ad una questione di efficacia dei costi, il che è più difficile da obiettare ed è meno chiaro. Qualsiasi strategia di controllo obbligatoria può portare a risultati negativi, come la conformità parziale, nella quale viene fatto l’accomodamento più facile e più visibile – una rampa all’entrata principale di un centro commerciale, ad esempio – ma nient’altro viene cambiato, lasciando
l’utente di carrozzina bloccato una volta che si trova all’interno dell’edificio (128). Tutti i miglioramenti all’accesso sono ovviamente ben accolti, ma accomodamenti costosi e simbolici possono prosciugare il bilancio stanziato e fallire nell’ottenere l’accessibilità completa. Le soluzioni di accessibilità devono anche essere pratiche, non umilianti e di facile utilizzo. Uno studio ha rilevato che i cosiddetti “ascensori accessibili” erano tutti montacarichi – alcuni dei quali erano progettati per il trasporto dell’immondizia – ed erano localizzati in luoghi inaccessibili dell’edificio (49). Un approccio più efficace, anche se limitato nella sua portata, è l’Act on Licences for Restaurants, Cafes and Bars[Legge sulle Licenze per Ristoranti, Bar e Pub] che rende l’accessibilità in Germania una condizione necessaria per ottenere la licenza operativa. In considerazione delle difficoltà dell’approccio di applicabilità obbligatoria, alcuni paesi hanno tentato di offrire incentivi: ■ “Warsaw without Barriers” [Varsavia senza barriere] è una campagna in Polonia che offre premi per le soluzioni d’accessibilità più innovative ed efficaci nel centro della città. ■ Progetto “Map of Accessible Sofia” [Mappa dei luoghi accessibili in Sofia] in Bulgaria, che ha evidenziato e pubblicizzato i negozi e le strutture accessibili. ■ Una parte integrale della Strategia Nazionale per la Disabilità in Irlanda riguardante l’accessibilità pubblica è quella di convincere i costruttori che gli edifici accessibili gli forniranno un buon ritorno sul loro investimento attraverso il miglioramento del valore di mercato, ampliando il potenziale utilizzo, promuovendo un’immagine migliore, facilitando l’utilizzo e aumentando la sicurezza (56) (vedi Riquadro 7.2). ■ Nella provincia canadese di Ontario, l’Associazione dei Dirigenti Comunali, in risposta alle disposizioni del Accessibility for Ontarians with DisabilitiesAct[Legge sull’accessibilità per gli abitanti di Ontario con disabilità] del 2005, ha creato un sito con gli 167
Prospettive Internazionali sulla lesione del midollo spinale
“strumenti per l’accessibilità nei comuni” che mette in mostra metodi innovativi per rispettare i requisiti imposti dalla Legge. Il sito web ha favorito un senso di competizione tra i comuni nell’identificare metodi fattibili di costruire edifici e spazi pubblici accessibili (129). Un indicatore chiave del successo di ogni programma di accessibilità pubblica è la misura in cui è completa ed integrata. Un programma di accessibilità per gli edifici e spazi pubblici e per gli edifici privati aperti al pubblico, dovrebbe ambire a divenire pienamente accessibili a passi graduali ed evitare la trappola del “tutto o niente” in cui i miglioramenti importanti iniziali vengono rimandati perché la completa accessibilità non è ottenibile immediatamente. Tutti i componenti della strategia – linee guida tecniche, conoscenze e competenze professionali, quadri legislativi e politici, consapevolezza pubblica, volontà politica e risorse economiche – devono essere inglobate in un unico programma di accessibilità attraverso un’agenzia di contatto designata. Questa strategia dovrebbe stanziare finanziamenti per l’accessibilità ed assicurare che le istituzioni di formazione professionale (per l’architettura, urbanistica, design e professioni relative) vengano incoraggiate ad insegnare l’accessibilità (14, 104). Ci dovrebbe essere un collegamento formale tra le persone con disabilità, i professionisti del settore (professionisti della riabilitazione, politici, costruttori, ingegneri, architetti e urbanisti) ed altri attori principali, per assicurare la partecipazione continua nel programma di accessibilità. Anche la tragedia di una calamità naturale può inoltre presentare un’opportunità di ricostruire con in mente l’accessibilità. Nella Nuova Zelanda il progetto “Accessible Christchurch” è stato lanciato a luglio 2011 per promuovere i bisogni delle persone disabili e per assicurare l’uso degli standard di lifetime design nel ricostruire dopo i devestantirerremoti di quell’anno. Dopo il terremoto e lo tsunami dell’Oceano Indiano nel 168
2004, gli alloggi nello Sri Lanka sono stati ricostruiti per essere più accessibili (vedi Riquadro 7.1). Così, anche i governi con limitazioni economiche possono muoversi significativamente verso l’accessibilità, come è successo anche ad Haiti (130).
Conclusioni e raccomandazioni L’ambiente fisico che circonda le PLM può facilitare o impedire la loro partecipazione ed inclusione nella vita sociale, economica, politica e culturale. Vi è un’ampia gamma di barriere, e la maggior parte delle PLM si confronta con almeno alcune di queste barriere alla partecipazione ogni giorno della loro vita (3,6). Migliorare l’accessibilità migliora notevolmente la vita quotidiana di una PLM. Inoltre, l’accessibilità ha valore anche per gli altri, come le persone anziane, genitori con passeggini, e le persone con altre restrizioni (temporanee o permanenti) motorie. L’accessibilità aiuta tutti. Le politiche e le leggi appropriate d’accessibilità, insieme alla loro efficace applicazione, sono essenziali per creare una “cultura dell’accessibilità”. Le seguenti raccomandazioni evidenziano le misure che possono aiutare a creare tale cultura.
Raccomandazioni trasversali ■ Adottare la progettazione universale come approccio concettuale di design degli edifici, del sistema dei trasporti e delle case che sono accessibili alle PLM e promuovere la consapevolezza dell’accessibilità su tutti i livelli. ■ Sviluppare standard locali d’accessibilità appropriati, rispondendo alle culture, contesti e bisogni locali. Poi includere l’accessibilità come criterio di progetto e di permessi negli alloggiamenti, negli ambienti edificati e nei trasporti, e monitorare la conformità con le leggi d’accessibilità per assicurare che gli standard di accesso universale siano soddisfatti.
Capitolo 7 Lesione midollare e ambienti accessibili
Riquadro 7.2 Una verifica sul mantenimento dell’accessibilità Esternamente Controllare:
■■ parcheggi designati sono riservati all’uso di guidatori con disabilità; ■■ rampe e percorsi di circolazione sono liberi da bici parcheggiate o altre ostruzioni; ■■ percorsi di circolazione ed uscite d’emergenza dai palazzi ai luoghi sicuri si trovano su superfici che sono libere da ostruzioni e ben illuminate;
■■ aree in corso di manutenzione o riparazione sono adeguatamente protette e vengono forniti percorsi alternativi, dove necessari, che sono chiaramente indicati;
■■ le superfici dei percorsi sono ben mantenute, pulite, senza brecciolino, sabbia, fango, ghiaccio, neve e muschio; ■■ le batterie per le piattaforme elevatrici sono sempre cariche; ■■ ausili all’evacuazione sono al loro posto. Ingressi Controllare:
■■ spazi per la rotazione in cima alle rampe vengono mantenuti liberi da ostruzioni; ■■ l’accesso a campanelli, cassette della posta e maniglie è senza ostruzioni; ■■ le porte sono facili da aprire, ed i meccanismi di chiusura sono impostati alla forza minima necessaria per chiudere la porta;
■■ gli atri d’ingresso sono liberi da ostruzioni, sia permanenti che temporanei. Circolazione orizzontale all’interno dell’edificio Controllare:
■■ zerbini sono ad incasso e, insieme ai tappeti, sono fissati in maniera sicura in modo da non causare inciampi; ■■ mantenimento delle finiture del pavimento antiscivolo, (ripulitura tempestiva di versamenti di liquidi) con l’utilizzo di detergenti e cere appropriati;
■■ sono sostituite le finiture consumate dei pavimenti; ■■ l’illuminazione artificiale è a livelli adeguati; ■■ le porte sono facili da aprire, ed i meccanismi di chiusura sono impostati alla forza minima necessaria per chiudere la porta;
■■ le porte sono tenute chiuse quando non in uso; ■■ gli spazi per le carrozzine nelle sale d’attesa e altrove sono privi di ostruzioni; ■■ percorsi di circolazione sono privi di ostruzioni (ad es. cassette degli attrezzi, scatole di file, distributori automatici, fotocopiatrici);
■■ i rifugi sono privi di ostruzioni; ■■ l’altezza libera adeguata è mantenuta in tutto l’edificio, senza tracce di cavi per terra o ad altezze inferiori di 220 cm;
■■ entrata ed uscita da tutti gli ascensori e scale mantenute libere da ostruzioni. Fonte (56)
■ Coinvolgere direttamente organizzazioni
di PLM, oltre ad altre organizzazioni per disabili, negli sforzi d’accessibilità, comprendendo la stesura e lo sviluppo di politiche,
prodotti e servizi, la valutazione dei bisogni degli utenti, ed il monitoraggio del progresso. ■ Fare miglioramenti graduali agli ambienti, cominciando dalle barriere basilari e 169
Prospettive Internazionali sulla lesione del midollo spinale
lentamente innalzando la barra degli standard e gli obiettivi in concomitanza con la disponibilità delle risorse. Iniziare con edifici pubblici critici quali ospedali, uffici governativi e scuole. Nei contesti con risorse limitate, è necessaria una progettazione strategica che evidenzi le priorità e che illustri una serie di obiettivi in continua espansione, basati su studi pilota per imparare dalle esperienze che cosa ha esito positivo ed in quali contesti. ■ Accrescere la consapevolezza per ridurre le percezioni sbagliate ed i pregiudizi nei confronti della LM ed altre disabilità. Assicurare che il personale impiegato nei servizi pubblici e privati sono addestrati a fornire accesso ed a trattare i clienti disabili con rispetto e sensibilità.
■ Creare un registro di alloggi accessibili per permettere alle PLM di individuare facilmente gli alloggi accessibili appropriati.
Trasporti pubblici ■ Rendere l’accessibilità nei trasporti pubblici una parte integrale delle politiche generali di trasporto del paese, monitorandola da un’agenzia responsabile con rappresentanti di persone con esigenze di mobilità ed altri bisogni d’accesso. ■ Puntare alla completa continuità di accessibilità attraverso l’intera catena dei trasporti includendo il miglioramento dei marciapiedi e delle strade, degli incroci, e l’accesso agli autobus, tram, treni e altri veicoli.
Alloggi ■ Fornire informazioni sulla convenienza e fattibilità degli adattamenti della casa e della ristrutturazione, e migliorare l’accessibilità economica offrendo sovvenzioni o incentivi fiscali. ■ Fornire incentivi pubblici-privati per aumentare la quantità di alloggi accessibili. Incoraggiare le associazioni delle PLM, le autorità locali, le cooperative residenziali e gli altri attori principali a lavorare con i costruttori per progettare e costruire alloggi accessibili.
Edifici e spazi pubblici ■ Assicurare la conformità con gli standard per gli edifici e spazi pubblici nuovi o ristrutturati attraverso una combinazione di regolamentazioni legali, multe e condizioni per i permessi, insieme alla consapevolezza pubblica. ■ Ambire ad un percorso massimo di circolazione per gli edifici e per le strutture pubbliche prioritarie, in base alla discrezione locale. ■ Stabilire un processo di valutazione e nominare un’agenzia governativa responsabile per l’attuazione dei programmi d’accessibilità.
Referenze 1. 2. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). Fougeyrollas P. Documenting environmental factors for preventing the handicap creation process: Quebec contributions relating to ICIDH and social participation of people with functional differences. Disability and Rehabilitation, 1995, 17:145-153. doi: http:// dx.doi.org/10.3109/09638289509166709 PMID:7787197 Gray DB et al. A subjective measure of environmental facilitators and barriers for people with mobility limitations. Disability and Rehabilitation, 2008, 30:434-457. doi: http://dx.doi.org/10.1080/09638280701625377 PMID:17943511 Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord, 2010, 48:73-79. doi: http://dx.doi.org/10.1038/sc.2009.92 PMID:19636329 Noreau L, Fougeyrollas P, Boschen KA. The perceived influence of the environment on social participation among individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2002, 7:56-72. doi: http://dx.doi. org/10.1310/1UGA-EY2T-N6XP-1PHE Whiteneck G et al. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1793-1803. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.024 PMID:15520974
3. 4. 5.
6.
170
Capitolo 7 Lesione midollare e ambienti accessibili
7.
Reinhardt JD, Post MWM. Measurement and evidence of environmental determinants of participation in spinal cord injury: a systematic review of the literature. Topics in Spinal Cord Injury Rehabilitation, 2010, 15:26-48. doi: http://dx.doi.org/10.1310/ sci1504-26 8. WHO. World report on disability. Geneva, World Health Organization, 2011. 9. Dovey K. Home and homelessness. In: Altman I, Wener CM, eds. Home environments, human behavior, and environment: advances in theory and research. New York, NY, Plenum, 1985:33−63. 10. Heywood F. The health outcomes of housing adaptations. Disability & Society, 2004, 19:129-143. doi: http://dx.doi. org/10.1080/0968759042000181767 11. Rauh VA, Landrigan PJ, Claudio L. Housing and health intersection of poverty and environmental exposures. Annals of the New York Academy of Sciences, 2008, 1136:276-288. doi: http://dx.doi.org/10.1196/annals.1425.032 PMID:18579887 12. Mann WC et al. Environmental problems in the homes of elders with disabilities. The Occupational Therapy Journal of Research, 1994, 14:191-211. 13. Stark S. Creating disability in the home: the role of environmental barriers in the United States. Disability & Society, 2001, 16:37-49. doi: http://dx.doi.org/10.1080/713662037 14. Steinfeld E, Shea SM. Enabling home environments: identifying barriers to independence. Technology and Disability, 1993, 2:69-79. 15. Toran K. Accessible housing database and manual. Berkeley, CA, World Institute on Disability, 2000 (http://www.wid.org/ publications/accessible-housing-database-and-manual, accessed 28 March 2012). 16. Forrest G, Gombas G. Wheelchair-accessible housing: its role in cost containment in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1995, 76:450-452. doi: http://dx.doi.org/10.1016/S0003-9993(95)80576-1 PMID:7741616 17. Moore W. NHS and local government try to stop introduction of “bed blocking” fines. British Medical Journal, 2003, 326:184. doi: http://dx.doi.org/10.1136/bmj.326.7382.184/g PMID:12549436 18. Eide AH, Benedicte I. Living conditions among people with disabilities in developing countries. In: Eide AH et al., eds. Disability and poverty: a global challenge. University of Bristol, The Policy Press, 2011, 55−70. 19. IDRM. Regional report of the Americas. Chicago, IL, International Disability Rights Monitor, 2004 (http://idrmnet.org/pdfs/IDRM_ Americas_2004.pdf, accessed 27 March 2012). 20. IDRM. Regional report of Asia. Chicago, IL, International Disability Rights Monitor, 2005 (http://idrmnet.org/pdfs/CIR_IDRM_ Asia_05.pdf, accessed 27 March 2012). 21. IDRM. Regional report of Europe. Chicago, IL, International Disability Rights Monitor, 2007 (http://idrmnet.org/pdfs/IDRM_ Europe_2007.pdf, accessed 20 April 2012). 22. Beresford R, Rhodes D. Housing and disabled children. York, Joseph Rowntree Foundation, 2008. 23. Imrie R. The role of the building regulations in achieving housing quality. Environment and Planning. B, Planning & Design, 2004, 31:419-437. doi: http://dx.doi.org/10.1068/b3056 24. Milner J, Madigan R. Regulation and innovation: rethinking inclusive housing design. Housing Studies, 2004, 19:727-744. doi: http://dx.doi.org/10.1080/0267303042000249170 25. Habinteg. Mind the step. London, Habinteg Housing Association, 2010. 26. Jacobs K et al. What future for public housing? A critical analysis. Hobart, Australian Housing and Urban Research Institute Southern Research Centre, 2010. 27. Hills J. Ends and means: the future roles of social housing in England. London, ESRC Research Centre for Analysis of Social Exclusion/ London School of Economics and Political Science, 2007 (CASE report 34). 28. Scanlon K, Whitehead C, eds. Social housing in Europe II: a review of policies and outcomes. London, London School of Economics, 2008. 29. Wehman P et al. Removing transportation barriers for persons with spinal cord injuries: an ongoing challenge to community reintegration. Journal of Vocational Rehabilitation, 1999, 13:21-30. 30. Scheer J et al. Access barriers for persons with disabilities: the consumer’s perspective. Journal of Disability Policy Studies, 2003, 13:221-230. doi: http://dx.doi.org/10.1177/104420730301300404 31. Wee J, Paterson M. Exploring how factors impact the activities and participation of persons with disability: constructing a model through grounded theory. Qualitative Report, 2009, 14:165-200. 32. United Spinal Association. Accessible air travel: a guide for people with disabilities. East Elmhurst, NY, United Spinal Association, 2012. (http://www.unitedspinal.org/disability-publications-resources/disability-publications/, accessed 26 March 2012). 33. Iwarsson S, Jensen G, Ståhl A. Travel chain enabler: development of a pilot instrument for assessment of urban public bus transport accessibility. Technology and Disability, 2000, 12:3-12. 34. Roberts P, Babinard J. Transport strategy to improve accessibility in developing countries. Washington, DC, World Bank, 2005.
171
Prospettive Internazionali sulla lesione del midollo spinale
35. IRTU. Economic aspects of taxi accessibility. Paris/Geneva, European Conference of Ministers of Transport/International Road Transport Union, 2001. 36. Stahl A. The provision of transportation for the elderly and handicapped in Sweden. Lund, Institutionen för Trafikteknik/Lunds Tekniska Högskola, 1995. 37. Wretstrand A et al. Injuries in special transport services – situations and risk levels involving wheelchair users. Medical Engineering & Physics, 2009, 32:248-253. doi: http://dx.doi.org/10.1016/j.medengphy.2009.07.022 PMID:19720552 38. Sapey B, Stewart J, Donaldson G. Increases in wheelchair use and perceptions of disablement. Disability & Society, 2005, 20:489505. doi: http://dx.doi.org/10.1080/09687590500156162 39. Barf HA et al. Restrictions in social participation of young adults with spina bifida. Disability and Rehabilitation, 2009, 31:921-927. doi: http://dx.doi.org/10.1080/09638280802358282 PMID:19116807 40. Ahn HC et al. Architectural barriers to persons with disabilities in business in an urban community. The Journal of Burn Care & Rehabilitation, 1994, 15:175-179. doi: http://dx.doi.org/10.1097/00004630-199403000-00014 41. United States Access Board. Uniform Federal Accessibility Standards (UFAS). Washington, DC, United States Access Board, 2007 (http://www.access-board.gov/ufas/ufas-html/ufas.htm, accessed 27 March 2012). 42. Schneider M, Couper J, Swartz L. Assessment of accessibility of health facilities to persons with disabilities. Matieland, Stellenbosch University, 2010. 43. Allotey P et al. The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegia in Australia and Cameroon. Social Science & Medicine, 2003, 57:949-958. doi: http://dx.doi.org/10.1016/S0277-9536(02)00463-X PMID:12850119 44. Rimmer JH et al. Accessibility of health clubs for people with mobility disabilities and visual impairments. American Journal of Public Health, 2005, 95:2022-2028. doi: http://dx.doi.org/10.2105/AJPH.2004.051870 PMID:16254234 45. Williams R et al. Outdoor recreation participation of people with mobility disabilities. Selected results of the National Survey of Recreation and the Environment. Journal of Park and Recreation Administration, 2004, 22:85-101. 46. Xiang H et al. Risk of vehicle–pedestrian and vehicle–bicyclist collisions among children with disabilities. Accident; Analysis and Prevention, 2006, 38:1064-1070. doi: http://dx.doi.org/10.1016/j.aap.2006.04.010 PMID:16797463 47. Tight MR, Carsten OMJ, Sherborne D. Problems for vulnerable road users in Great Britain. Working Paper 292. Leeds, Institute for Transport Studies, University of Leeds, 1989. 48. Williams K, Savill T, Wheeler A. Review of the road safety of disabled children and adults. TRL Report TRL559. Wokingham, Transport Research Laboratory, 2002. 49. Martin LM. Wheelchair accessibility of public buildings in Utica, New York. The American Journal of Occupational Therapy., 1987, 41:217-221. doi: http://dx.doi.org/10.5014/ajot.41.4.217 PMID:3688133 50. Rivano-Fischer D. Wheelchair accessibility of public buildings in Al Ain, United Arab Emirates (UAE). Disability and Rehabilitation, 2004, 26:1150-1157. doi: http://dx.doi.org/10.1080/096382804100017214843 PMID:15371028 51. Scelza WM et al. Perceived barriers to exercise in people with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2005, 84:576-583. doi: http://dx.doi.org/10.1097/01.phm.0000171172.96290.67 PMID:16034226 52. Welage N, Liu KPY. Wheelchair accessibility of public buildings: a review of the literature. Disability and Rehabilitation. Assistive Technology, 2011, 6:1-9. doi: http://dx.doi.org/10.3109/17483107.2010.522680 PMID:20958181 53. Hamzat TK, Dada OO. Wheelchair accessibility of public buildings in Ibadan, Nigeria. Asia Pacific Disability Rehabilitation Journal, 2005, 16:115-124. 54. Waenlor W et al. Facilities for the disabled in the commercial districts of Bangkok − are they adequate? The Southeast Asian Journal of Tropical Medicine and Public Health, 2002, 33 Suppl. 3:164-165. PMID:12971501 55. UNESCAP. Disability at a glance 2009: a profile of 36 countries and areas in Asia and the Pacific. Bangkok, United Nations Economic and Social Commission for Asia and the Pacific, 2009. 56. NDA. Building for everyone: inclusion, access and use. Dublin, National Disability Authority, 2002 (http://www.nda.ie/cntmgmtnew. nsf/0/EBD4FB92816E8BB480256C830060F761/$File/Building_for_Everyone.pdf, accessed 28 March 2012). 57. UNAPD. Uganda National Action on Physical Disability. Accessibility standards. A practical guide to create a barrier-free physical environment in Uganda. Kampala, National Action on Physical Disability/Ministry of Gender, Labour and Social Development, 2010 (http://www.danskhandicapforbund.dk/index.php/download_file/-/view/835/, accessed April 11, 2012). 58. USA. National Commission on Architectural Barriers. Design for all Americans. A report of the National Commission on Architectural Barriers to Rehabilitation of the Handicapped. Washington, DC, US Government Printing Office, 1967 (http://www.eric.ed.gov/ PDFS/ED026786.pdf, accessed 28 March 2012).
172
Capitolo 7 Lesione midollare e ambienti accessibili
59. Newman SD. Evidence-based advocacy using Photovoice to identify barriers and facilitators to community participation after spinal cord injury. Rehabilitation Nursing, 2010, 35:47-59. doi: http://dx.doi.org/10.1002/j.2048-7940.2010. tb00031.x PMID:20306612 60. World Bank. People with disabilities in India: from commitments to outcomes. Washington, DC, World Bank, 2009 (http:// siteresources.worldbank.org/INDIAEXTN/Resources/295583-1171456325808/DISABILITYREPORTFINALNOV2007.pdf?bcsi_scan_ C7A381BA8BD8A412=0&bcsi_scan_filename=DISABILITYREPORTFINALNOV2007.pdf accessed 28 April 2012). 61. Council of Canadians with Disabilities. Celebrating our accomplishments. Winnipeg, Council of Canadians with Disabilities, 2011. (http://www.ccdonline.ca/media/socialpolicy/booklet2011/celebrating-our-accomplishments.pdf?bcsi_scan_ C7A381BA8BD8A412=0&bcsi_scan_filename=celebrating-our-accomplishments.pdf, accessed 28 March 2012). 62. Venter C et al. Enhanced accessibility for people with disabilities living in urban areas. Ithaca, NY, Cornell University, 2002. (http://digitalcommons.ilr.cornell.edu/cgi/ viewcontent.cgi?article=1258&context=gladnetcollect&sei-redir=1&referer=http%3A%2F%2Fwww.google. ch%2Furl%3Fsa%3Dt%26rct%3Dj%26q%3Dpr%252Fint%252F248%252F02%26source%3Dweb%26cd%3D1%26sqi%3D2%26ved%3D0CCMQFjAA%26url%3Dhttp%253A%252F%252Fdigitalcommons.ilr.cornell.edu%252Fcgi%252Fviewcontent. cgi%253Farticle%253D1258%2526context%253Dgladnetcollect%26ei%3DXeOHT6LtGI-xhAeY49DSCQ%26usg%3DAFQjCNH_ Z84ektdtheC2GJkOEpCIOWz__g%26sig2%3DJm3pxr0kB7v7fNPOxCNYFg&bcsi_scan_97961A1EAF8C426F=8OF3I6CqR1a6YeGeQbpDFIMfwCxTAAAANYbiDQ==&bcsi_scan_filename=viewcontent.cgi, accessed 13 April 2012). 63. Kunieda M, Roberts P. Inclusive access and mobility in developing countries. Washington, DC, World Bank, 2007 (http:// siteresources.worldbank.org/INTTSR/Resources/07-0297.pdf, accessed 28 March 2012). 64. Clarke-Scott MA, Nowlan S, Gutman G. Progressive housing design and home technologies in Canada. In: Preiser WFE, Ostroff E, eds. Universal design handbook. New York, NY, McGraw Hill, 2001, 36.1–36.20. 65. Raheja G. Enabling environments for the mobility impaired in the rural areas. Roorkee, Indian Institute of Technology, 2008. 66. Imrie R, Kumar M. Focusing on disability and access in the built environment. Disability & Society, 1998, 13:357-374. doi: http:// dx.doi.org/10.1080/09687599826687 67. Noreau L, Boschen K. Intersection of participation and environmental factors: a complex interactive process. Archives of Physical Medicine and Rehabilitation, 2010, 91 Suppl:S44-S53. doi: http://dx.doi.org/10.1016/j.apmr.2009.10.037 PMID:20801279 68. Reinhardt JD et al. Measuring impact of environmental factors on human functioning and disability: a review of various scientific approaches. Disability and Rehabilitation, 2011, 33:2151−2165 (E-pub 7 May 2011). 69. Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors. Archives of Physical Medicine and Rehabilitation, 2009, 90 Suppl:S22-S35. doi: http://dx.doi.org/10.1016/j. apmr.2009.06.009 PMID:19892071 70. Fänge A, Iwarsson S. Physical housing environment: Development of a self-assessment instrument. Canadian Journal of Occupational Therapy, 1999, 66:250-260. PMID:10641377 71. Fänge A, Iwarsson S. Accessibility and usability in housing: construct validity and implications for research and practice. Disability and Rehabilitation, 2003, 25:1316-1325. PMID:14617438 72. Green RJ. An introductory theoretical and methodological framework for a universal mobility index (UMI) to quantify, compare, and longitudinally track equity of access across the built environment. Journal of Disability Policy Studies, 2011, 21:219-229. doi: http://dx.doi.org/10.1177/1044207310384998 73. Stark S et al. Development of a measure of receptivity of the physical environment. Disability and Rehabilitation, 2007, 29:123-137. doi: http://dx.doi.org/10.1080/09638280600731631 PMID:17364763 74. Stark SL et al. The interrater reliability of the community health environment checklist. Archives of Physical Medicine and Rehabilitation, 2008, 89:2218-2219. doi: http://dx.doi.org/10.1016/j.apmr.2008.04.020 PMID:18996253 75. Heywood F. Money well spent: the effectiveness and value of housing adaptations, Bristol, The Policy Press, 2001. 76. Olsen RV, Ehrenkrantz E, Hutchings B. Creating supporting environments for people with dementia and their caregivers through home modifications. Technology and Disability, 1993, 2:47-57. 77. Stark S. Home modifications that enable occupational performance. In: Letts L, Rigby P, Stewart D, eds. Using environments to enable occupational performance. Thorofare, NJ, Slack, 2003. 78. Tually S, Beer A, Mcloughlin P. Housing assistance, social inclusion and people living with a disability. AHURI Final Report 178. Melbourne, Australian Housing and Urban Research Institute Southern Research Centre, 2011. 79. Fänge A, Iwarsson S. Changes in accessibility and usability in housing: an exploration of the housing adaptation process. Occupational Therapy International, 2005, 12:44-59. doi: http://dx.doi.org/10.1002/oti.14 PMID:15962699
173
Prospettive Internazionali sulla lesione del midollo spinale
80. Ratzka A. A brief survey of studies on costs and benefits of non-handicapping environments. Presentation at the International Congress on Accessibility in Rio de Janeiro, Brazil, June 1994. Stockholm, Independent Living Institute, 1994 (http://www. independentliving.org/cib/cibrio94access.html, accessed 28 March 2012). 81. Lansley P et al. Adapting the homes of older people: a case study of costs and savings. Building Research and Information: the international journal of research, development and demonstration, 2004, 32:468–483. doi:10.1080/0961321042000269429 doi: http:// dx.doi.org/10.1080/0961321042000269429 82. Jones C. Review of housing adaptations including disabled facilities grants – Wales. Cardiff, Welsh Assembly Government, 2005 (http://new.wales.gov.uk/dsjlg/research/houseadaptreview/reviewe.pdf?lang=en, accessed 27 March 2012). 83. CMHC/SCHL. Homeowner residential rehabilitation assistance program. Homeowner RRAP. Ottawa, Canadian Mortgage and Housing Corporation (http://www.cmhc-schl.gc.ca/en/co/prfinas/prfinas_001.cfm, accessed 28 March 2012). 84. Tremblay KR, Birdsong C. Home adaptations for disabled persons. Fact sheet No. 9.529. Fort Collins, CO, Colorado State University, 2011 (http://www.ext.colostate.edu/pubs/consumer/09529.pdf, accessed 11 April 2012). 85. WHO. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. 86. Cities Alliance. The enabling environment for housing finance in Kenya. Civis: Shelter Finance for the Poor Series, 2003, issue 4. Washington, DC, Cities Alliance, 2003 (http://www.citiesalliance.org/ca/sites/citiesalliance.org/files/Kenya+CIVIS+April03[1].pdf, accessed 27 March 2012). 87. Parker S, Fisher KR. Facilitators and barriers in Australian disability housing support policies: using a human rights framework. Disability Studies Quarterly, 2010, 30:3-4. 88. Hammerman CD, Bennett S. The disability housing market: opportunity for community development finance as the Americans with Disabilities Act turns 20. Community Development Investment Review, 2009, 5:88−96 (http://www.frbsf.org/publications/ community/review/vol5_issue3/hammerman_bennett.pdf, accessed 27 March 2012). 89. Scotts M, Saville-Smith K, James B. International trends in accessible housing for people with disabilities: a selected review of policies and programmes in Europe, North America, United Kingdom, Japan and Australia. Wellington, Centre for Research, Evaluation and Social Assessment, 2007 (http://www.chranz.co.nz/pdfs/working-paper-2.pdf, accessed 11 April 2012). 90. Brewerton J, Darton D, eds. Designing lifetime homes. York, Joseph Rowntree Foundation, 1997. 91. Mayor of London. London Accessible Housing Register: a good practice guide for social housing landlords. London, Mayor of London, 2011 (http://www.london.gov.uk/sites/default/files/LAHR%20Good%20practice%20guide%202011.pdf, accessed 28 March 2012). 92. Truesdale S, Steinfeld E. Visit-ability: an approach to universal design in housing. Buffalo, NY, Center for Inclusive Design and Environmental Access, 2002. 93. Schwartz AF. Housing policy in the United States: an introduction. New York, NY, Routledge, 2006. 94. Doble A, Sieniuc R. Integration and innovation: the Seabird Island project. ArchitectureBC. Journal of the Architectural Institute of British Columbia, 2003, Issue 10, 13–20. 95. European Commission. 2010: A Europe accessible for all. ETCAATS, e-learning for accessible tourism, 2003 (http://www.etcaats. eu/?i=etcaats.en.etcaatslibrary.852, accessed 6 March 2012). 96. CECODHAS. Housing organisations creating social capital. Exchange (published by CECODHAS Housing Europe – The European Federation of Public, Cooperative & Social Housing, Brussels), Spring 2009 (http://www.housingeurope.eu/www.housingeurope. eu/uploads/file_/exch%20spring_09en.pdf accessed 11 April 2012). 97. Randall B. Breaking down the barriers: social housing for people with disabilities in Europe. Brussels, European Liaison Committee for Social Housing, 2010. 98. Whitehead C, Scanlon K. Social housing in Europe. London, London School of Economics, 2007 (http://vbn.aau.dk/files/13671493/ SocialHousingInEurope.pdf, accessed 4 January 2012). 99. SELHP. Wheelchair homes design guidelines. Guidelines to achieve the necessary standards for wheelchair users’ dwellings. London, South East London Housing Partnership, 2008 (http://www.selondonhousing.org/Documents/080530%20WC%20guide%20 May%2008.pdf, accessed 28 March 2012). 100. South Australia. Housing options for people with a disability. Adelaide, Government of South Australia (http://www. sa.gov.au/subject/Community+Support/Disability/Adults+with+disability/Housing+and+home+assistance/ Housing+options+for+people+with+a+disability, accessed 28 March 2012). 101. Rwanda. Rwanda demobilization program builds homes for disabled ex-combatants (News release). Kigali, World Bank, 2009 (http://web.worldbank.org/WBSITE/EXTERNAL/COUNTRIES/ AFRICAEXT/0,contentMDK:22275330~pagePK:146736~piPK:226340~theSitePK:258644,00.html, accessed 28 March 2012). 102. Leonardi M et al. Integrating research into policy planning: MHADIE policy recommendations. Disability and Rehabilitation, 2010, 32 Suppl 1:S139-S147. doi: http://dx.doi.org/10.3109/09638288.2010.520807 PMID:20874663
174
Capitolo 7 Lesione midollare e ambienti accessibili
103. Wretstrand A et al. Older people and local public transit: mobility effects of accessibility improvements in Sweden. Journal of Transport and Land Use, 2010, 2:49-65. 104. Steinfeld E. Universal design in mass transportation. In: Preiser WFE, Ostroff E, eds. Universal design handbook. New York, NY, McGraw Hill, 2001:24.1–24.25. 105. Daamen W, De Boer E, De Kloe R. Assessing the gap between transport vehicles and platforms as a barrier for the disabled: use of laboratory experiments. Transportation Research Record, 2008, 2072:131-138. doi: http://dx.doi.org/10.3141/2072-14 106. Dejeammes M. Overview of technological developments for accessible transport systems and mobility in Europe. Paper delivered at the 12th International Conference on Mobility and Transport for Elderly and Disabled Persons (TRANSED), Hong Kong, 2−4 June 2010 (http://www.sortclearinghouse.info/cgi/viewcontent.cgi?article=1647&context=research accessed 28 March 2012). 107. Sage Traveling web site. Disabled travel to Europe. (http://www.sagetraveling.com accessed 2013). 108. Rickert T. Bus rapid transit accessibility guidelines. Washington, DC, World Bank, 2007 (http://siteresources.worldbank.org/ DISABILITY/Resources/280658-1172672474385/BusRapidEngRickert.pdf, accessed 20 April 2012). 109. Wright L. Planning guide: bus rapid transit. Eschborn, Deutsche Gesellschaft für Technische Zusammenarbeit, 2004 (http:// ecoplan.org/library/clinton/brt-planning%20guide-gtz.pdf, accessed 28 March 2012). 110. Imrie R. Disability and the city: international perspectives. London, Paul Chapman Publishing, 1996. 111. Walters J. Overview of public transport policy developments in South Africa. Research in Transportation Economics, 2008, 22:98108. doi: http://dx.doi.org/10.1016/j.retrec.2008.05.023 112. Maynard A. Can measuring the benefits of accessible transport enable a seamless journey? Journal of Transport and Land Use, 2009, 2:21-30. 113. Schalekamp H et al. An international review of paratransit regulation and integration experiences. Lessons for public transport system rationalisation and improvement in African cities. Rondebosch, African Centre of Excellence for Studies in Public and Non-motorised Transport (ACET), 2010 (http://www.fut.se/download/18.1166db0f120540fe049800010991/ Mfinanga++international+review.pdf, accessed 28 March 2012). 114. Ståhl A. Adaptation of the whole travel chain – benefits and attitudes. Paper presented at the 23rd PTRC European Transport Forum, Coventry, United Kingdom, 1996. 115. International ITS. FLIPPER: improving the provision of flexible transport services. 2009 (http://www.itsinternational.com/ sections/transmart/features/flipper-improving-the-provision-of-flexible-transport-services/?locale=en, accessed 11 April 2012). 116. Finn B. Market role and regulation of extensive urban minibus services as large bus service capacity is restored: case studies from Ghana, Georgia and Kazakhstan. Research in Transportation Economics, 2008, 22:118-125. doi: http://dx.doi.org/10.1016/j. retrec.2008.05.012 117. Lindau LA et al. Alternative financing for bus rapid transit (BRT): the case of Porto Alegre, Brazil. Research in Transportation Economics, 2008, 22:54-60. doi: http://dx.doi.org/10.1016/j.retrec.2008.05.018 118. Peters B. Driving performance and workload assessment of drivers with tetraplegia: an adaptation evaluation framework. Journal of Rehabilitation Research and Development, 2001, 38:215-224. PMID:11392654 119. Biering-Sørensen F, Hansen RB, Biering-Sørensen J. Mobility aids and transport possibilities 10−45 years after spinal cord injury. Spinal Cord, 2004, 42:699-706. doi: http://dx.doi.org/10.1038/sj.sc.3101649 PMID:15289807 120. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/oti.228 PMID:17624872 121. Kohrman M. Motorcycles for the disabled: mobility, modernity and the transformation of experience in urban China. Culture, Medicine and Psychiatry, 1999, 23:133-155. doi: http://dx.doi.org/10.1023/A:1005455815637 PMID:10388946 122. Kiyono Y et al. Car-driving ability of people with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2001, 82:1389-1392. doi: http://dx.doi.org/10.1053/apmr.2001.26089 PMID:11588742 123. Wallace JF. A policy analysis of the assistive technology alternative financing program in the United States. Journal of Disability Policy Studies, 2003, 14:74-81. doi: http://dx.doi.org/10.1177/10442073030140020301 124. Dalto M. Maryland’s assistive technology loan program: successful outreach and partnerships. Journal of Disability Policy Studies, 2003, 14:91-94. doi: http://dx.doi.org/10.1177/10442073030140020601 125. Motability Operations. Your guide to getting a Motability car: Car Info Guide April 2011. London, Motability Operations, 2011 (http:// www.motabilitycarscheme.co.uk/documents/PDFs/Car%20Scheme/Your%20guide%20to%20getting%20a%20Motability%20 car.pdf, accessed 28 March 2012). 126. Hammond M. The Utah Assistive Technology Foundation: program features and initiatives. Journal of Disability Policy Studies, 2003, 14:95-97. doi: http://dx.doi.org/10.1177/10442073030140020701
175
Prospettive Internazionali sulla lesione del midollo spinale
127. Royal Bank of Scotland Group Plc v Allen, 2009, EWCA Civ 1213. England and Wales Court of Appeal (Civil Division) Decisions (http://www.bailii.org/ew/cases/EWCA/Civ/2009/1213.html, accessed 20 April 2012). 128. McClain L. Shopping center wheelchair accessibility: ongoing advocacy to implement the Americans with Disabilities Act of 1990. Public Health Nursing (Boston, Mass.), 2000, 17:178-186. doi: http://dx.doi.org/10.1046/j.15251446.2000.00178.x PMID:10840287 129. AMCTO. Ontario municipal accessibility toolkit. Mississauga, Association of Municipal Managers, Clerks and Treasurers of Ontario, 2010 (http://www.accessiblemunicipalities.ca/home.asp, accessed 27 March 2012). 130. Iezzoni LI, Ronan LJ. Disability legacy of the Haitian earthquake. Annals of Internal Medicine, 2010, 152:812-814. PMID:20231547
176
Capitolo 8 Istruzione e lavoro
“I miei insegnanti, compagni e familiari mi sostengono perché sanno di che cosa sono capace. I ragazzi delle altre scuole, invece, mi prendevano in giro perché sono relegato su di una carrozzina, tuttavia hanno smesso perché ho saputo rispondergli a tono.Se ci fosse una cosa che vorrei cambiare sarebbe l’atteggiamento della gente nei confronti delle persone con disabilità: la gente dovrebbe trattarci come persone normali invece di provare pena per noi o pensare che siamo scemi”. (Kiringawa, Nuova Zelanda) “I professori e il personale amministrativo non riescono a capire la necessità di programmare lo svolgimento delle lezioni in luoghi accessibili alle carrozzine e trovano difficile capire perché circa 800 studenti dovevano essere scomodati per facilitare l’accesso ad un solo studente con disabilità. Inoltre, i miei compagni, non disabili, tendono a percepire gli accomodamenti ragionevoli come vantaggio ingiusto.. Ora è stato assunto all’università un’incaricato per risolvere problemi legati alla disabilità e pertanto il personale amministrativo così come i professori e gli studenti vengono costantemente sensibilizzati circa gli accomodamenti ragionevoli a favore di studenti con disabilità in conformità con l’attuale legislazione sudafricana”. (Lizelle, Sud Africa) “Quando mi sono ammalato facevo consegne a domicilio di prodotti alimentari. Pensavo che, a causa della carrozzina, avrei perso il mio lavoro. Il proprietario del negozio, invece, mi diceva sempre che avrei potuto tenerlo. Quando sono stato in grado di tornare al lavoro sono diventato il responsabile del negozio: controllo i prodotti, mi occupo dei fornitori, controllo i dipendenti e anche i soldi che entrano. Il lavoro mi fa bene e mi permette di relazionarmi con altre persone, di uscire di casa e di avere un futuro. E mi aiuta molto a dimenticare le preoccupazioni legate alla lesione”. (José, Argentina) “Sei anni fa, all’età di 30 anni, la tubercolosi alla spina dorsale mi ha reso paraplegico. Durante il primo anno mi sentivo giù e depresso. Mi rifiutavo di fare qualsiasi cosa tranne che stare a letto. Un giorno, la mamma mi ha spinto ad andare a trovare un vicino. Quando l’ho visto sdraiato sul letto, incapace di muovere gli arti ma sorridente, mi sono guardato e mi sono reso conto che avevo ancora braccia e mani normali e che potevo fare di più. In seguito, ho iniziato a prendermi cura da solo della mia persona e ho frequentato un corso professionale per persone con disabilità. Ora gestisco un piccolo negozio di elettronica a casa e guadagno circa 3.000 baht al mese, che mi è sufficiente per vivere”. (Boonpeng, Thailandia) “Dopo aver accettato la mia disabilità e dopo essermi anche affermato nello sport, la porta della vita si è aperta. La volontà di essere impiegato è stata fondamentale: ho ricevuto molta assistenza dall’Ufficio di collocamento, il quale mi ha trovato un lavoro in una società governativa. Presto ho capito che volevo ambire più in alto e ho incominciato a cercare un altro lavoro. L’ho trovato in una compagnia privata dove ho imparato tanto. Sono stato fortunato ad entrare in un ambiente dove le persone sono giudicate dalla loro abilità e non dalla loro disabilità. Nel giro di pochi anni sono diventato il direttore responsabile”. (Janez, Slovenia)
8
Istruzione e lavoro L’istruzione non serve solo per apprendere insegnamenti, ma serve a rendere le persone membri attivi della società. Il lavoro riguarda il senso di appartenenza, non solamente il reddito. Le persone con lesione midollare (PLM) hanno diritto all’istruzione e al lavoro sulla base di eguaglianza con gli altri. L’articolo 24 della Convenzione sui diritti delle persone con disabilità (CPRD) (1) sottolinea la necessità dei governi di garantire, sulla base delle pari opportunità, “un sistema di istruzione inclusiva a tutti i livelli” e di fornire accomodamenti ragionevoli, nonché servizi di sostegno individuale per facilitare l’accesso all’istruzione”. L’articolo 27 vieta ogni forma di discriminazione per quanto concerne il lavoro, promuove l’accesso alla formazione professionale e alle opportunità di lavoro autonomo e richiede accomodamenti ragionevoli sul posto di lavoro. L’istruzione costituirà un passo verso il lavoro e la partecipazione sociale per: ■ il bambino nato con spina bifida che deve destreggiarsi attraverso tutti i livelli di istruzione, dalla scuola primaria all’università ed oltre; ■ il giovane adulto che desidera finire la scuola o l’università dopo essere stato colpito dalla LM; ■ l’adulto colpito da LM che ha bisogno di riqualificarsi o migliorare le proprie competenze per aprire la porta a carriere alternative. L’inclusione nel sistema di istruzione generale può richiedere adattamenti ambientali. Un giovane può anche avere bisogno di consulenza ed altri sostegni per prepararsi a superare le sensazioni di bassa autostima o di disagio personale che possono ostacolare il suo ritorno a scuola o i suoi passi successivi verso l’istruzione superiore. Inoltre, per una PLM, ottenere e mantenere un lavoro significativo o tornare al lavoro che aveva prima della lesione può costituire una sfida. Eppure, con la riabilitazione professionale, la consulenza e la preparazione, con la tecnologia assistiva appropriata e con adeguamenti ed accomodamenti da parte del datore di lavoro, le PLM possono svolgere molti lavori. Il lavoro non è importante unicamente come fonte di sicurezza economica, ma rappresenta la base per una vita significativa offrendo contatti sociali, obiettivi da raggiungere e autostima. La piena partecipazione all’istruzione e al lavoro per le PLM dipende dal superamento dei pregiudizi che riguardano la loro condizione. Quando 179
Prospettive Internazionali sulla lesione del midollo spinale
insegnanti, dirigenti e compagni di scuola imparano che cosa sia la LM, questa conoscenza facilita il passaggio o il ritorno a scuola di un bambino o un giovane adulto con LM. Nel contesto lavorativo, le supposizioni su cosa può o non può fare una PLM possono ostacolare una persona qualificata dall’ottenere un lavoro o, se è già occupata, di guadagnare il rispetto dei colleghi. Molte volte il miglior modo di combattere i pregiudizi sulla LM è di avere l’esperienza diretta con le PLM come compagni di scuola o colleghi di lavoro e di studiare o lavorare fianco a fianco.
Lesione al midollo spinale e partecipazione all’istruzione In genere, è poco probabile che i bambini con disabilità incomincino a frequentare la scuola e spesso hanno tassi più bassi di frequenza e di promozione scolastica (2). Nei Paesi a basso reddito esiste un accesso limitato all’istruzione a tutti i livelli (3) e quasi non vi è accesso all’istruzione superiore per giovani con disabilità (4–6). I dati provenienti dal Malawi, Namibia, Zambia e Zimbabwe indicano che tra il 9 ed il 18% dei bambini di 5 o più anni d’età, senza disabilità, non ha mai frequentato la scuola, e questa percentuale sale a quote tra il 24 e il 39% nei bambini con disabilità (7–10). Uno studio proveniente dalla Cambogia stima che il dato di non frequenza scolastica può raggiungere il 45% (11). In molti Paesi a basso reddito, la carenza generale di risorse educative rende molto difficile dare accesso ai bambini con LM o con qualsiasi altra disabilità (12). La persistente mancanza di fondi implica una carenza cronica di personale, un’assenza di assistenza medica e una mancanza di attrezzature e strutture (13). I dati dal Kenya, ad esempio, evidenziano le barriere all’istruzione superiore, che vanno dalla mancanza di istituzioni post-secondarie alla loro inaccessibilità fisica, alla mancanza di servizi di transizione dall’istruzione secondaria, alle barriere attitudinali come lo stigma, e al contesto economico, generalmente 180
povero, degli studenti con disabilità (4). Le sfide che affrontano i Paesi a basso e medio reddito per promuovere l’inclusione di tutti i bambini con disabilità nel sistema di istruzione sono impressionanti, ma migliorare è possibile, soprattutto se si ascoltano più attentamente le voci degli studenti con disabilità e dei loro genitori (14). Sebbene ci siano prove disponibili sulla partecipazione all’istruzione di bambini e giovani adulti con disabilità, raramente questi dati sono disaggregati tanto da poter disporre di informazioni circa la LM. A volte è possibile solamente dedurre informazioni dai dati su “disabilità ortopediche” o anche da “disabilità fisiche” per avere un quadro della situazione. La maggior parte dei bambini con LM torna a scuola dopo la lesione e la riabilitazione, creando differenti bisogni di servizio (15). Dato che i tassi di incidenza di LM sono alti nelle persone con età intorno ai vent’anni (vedi Capitolo 2), l’attenzione è stata focalizzata sull’istruzione secondaria e post-secondaria (16). Il gruppo in età pediatrica che inizia ad andare a scuola è rappresentato quasi esclusivamente dai bambini con spina bifida (17), i quali affrontano sfide particolari che li distinguono dai bambini che tornano a scuola dopo la lesione. Tuttavia, la distribuzione dell’età in cui la LM colpisce si sta spostando in avanti a causa dell’insorgenza tardiva di LM traumatica e non traumatica (16,18,19), implicando che adulti più anziani con LM potrebbero tornare all’istruzione o alla formazione professionale per acquisire nuove competenze al fine di poter riprendere un lavoro diverso rispetto a quello che avevano prima. In relazione ai bambini con spina bifida si hanno maggiori conoscenze rispetto ad altre tipologie di disabilità perché essi hanno complessi bisogni educativi associati alle varie difficoltà fisiche, mentali ed emotive da cui possono essere interessati. La Spina bifida associata ad idrocefalo, può portare a limitazioni del funzionamento cognitivo in almeno un terzo dei bambini interessati, tra cui la difficoltà di attenzione e concentrazione (20) che necessitano, se disponibili, di
Capitolo 8 Istruzione e lavoro
risorse educative speciali (17,21,22). Studi recenti hanno anche rilevato che la presenza di depressione ed ansia tra i giovani adulti con spina bifida, contribuisce allo scarso rendimento scolastico (23). Nonostante queste sfide, uno studio longitudinale di bambini con spina bifida negli Stati Uniti indica che quasi la metà ha raggiunto con successo il terzo livello di istruzione (24). Questa tendenza avvalora le prove ed i dati che indicano un forte calo nei tassi di abbandono scolastico durante il periodo in cui negli Stati Uniti, vi è stato un aumento dei fondi per le risorse destinate a questi bambini (25). Per la maggior parte dei bambini e dei giovani adulti con LM, la sfida è quella di affrontare il ritorno all’istruzione secondaria o post-secondaria. A parte alcune ricerche condotte in Europa e negli Stati Uniti con piccoli campioni (26–29) sono poche le informazioni affidabili disponibili circa il successo o meno dell’esperienza scolastica di bambini con LM rispetto a bambini con altre disabilità o alla popolazione non disabile. Una ricerca qualitativa del Regno Unito ha evidenziato come il ritorno a scuola può costituire un passaggio traumatico (30). Il ritorno a scuola aveva più successo quanto più precocemente si realizzava e preferibilmente a partire dalla fase di riabilitazione in ospedale del bambino. Tutti gli studenti concordano che i problemi maggiori sono l’accessibilità fisica e la mancanza di formazione del personale nel rispondere ai bisogni dello studente ai fini della piena partecipazione a tutte le attività scolastiche, compresi gli sport e le gite. Il passaggio verso l’istruzione post-secondaria, l’università e college, sembra in genere costituire una sfida minore, forse perché gli studenti sono più maturi, hanno più esperienza con la loro LM e conoscono meglio i propri bisogni. Negli Stati Uniti, ad esempio, il 45% dei giovani adulti con disabilità motorie vanno al college o all’università dopo l’istruzione secondaria rispetto al 53% della popolazione generale studentesca (31). Uno studio ha evidenziato che l’82% dei partecipanti aveva frequentato il college (32). Lo
studio Longitudinale statunitense sulla Transizione (United States National Longitudinal Transition Study 2) ha ottenuto risultati simili, ma ha anche dimostrato una differenza rispetto al 77% di studenti non vedenti o muti che proseguono nell’istruzione post-secondaria (31). In Europa i dati sono equiparabili anche se i tassi di frequenza universitaria di studenti con disabilità motorie sono diminuiti negli ultimi anni (33).
Affrontare le barriere all’istruzione Per comprendere e rispondere alle numerose barriere che ostacolano l’accesso all’istruzione affrontate da bambini ed adulti con LM, è importante innanzitutto distinguere tre gruppi: bambini con spina bifida, bambini e giovani adulti che tornano a scuola dopo la riabilitazione, e adulti che tornano all’istruzione per acquisire competenze e conoscenze in vista di nuove prospettive lavorative dopo la LM.
Legislazione e politica L’articolo 24 della CRPD offre indicazioni chiare e dettagliate circa i requisiti a livello legislativo, politico e programmatico per affermare il diritto all’istruzione a tutti i livelli e per tutte le persone con disabilità (1,12). Alcuni Paesi ad alto reddito hanno previsto leggi e politiche per mettere in atto i principi dell’inclusione educativa, comprese le disposizioni generali antidiscriminatorie, come il Disability Discrimination Act nel Regno Unito, per rispondere alle denunce individuali di esclusione scolastica. Tuttavia, la legislazione è più efficace se è pro-attiva. In Danimarca, per esempio, la legislazione obbliga il Ministero dell’Istruzione a fornire i sussidi compensatori di cui le persone con disabilità hanno bisogno per poter seguire gli stessi corsi di formazione dei loro coetanei ed avere successo dal punto di vista accademico. In Francia, le scuole devono adottare misure positive 181
Prospettive Internazionali sulla lesione del midollo spinale
a favore degli studenti con disabilità ed adattare i percorsi accademici dal punto di vista fisico e pedagogico (33). Nei Paesi a basso e medio reddito ci sono spesso barriere legislative, tra cui leggi che legittimano chiaramente l’esclusione dei bambini con disabilità dal sistema di istruzione (34–36). L’UNESCO ha concluso che l’ostacolo più grande all’inclusione educativa in questi Paesi è la mancata attuazione di un sistema legislativo e politico che favorisca l’educazione inclusiva (37). Anche nei Paesi come il Sud Africa, dove il governo si è impegnato ad individuare gli ostacoli al pieno accesso all’istruzione, la mancanza di leggi e di programmi sovvenzionati non ha permesso sufficienti miglioramenti (38). Gli approcci calati dall’alto che non prendono in considerazione la situazione locale nelle comunità rurali hanno meno probabilità di avere successo (39). I Paesi devono intraprendere misure concrete per preparare il terreno ad una politica educativa praticabile, nonché prendere un impegno generale a favore del diritto all’istruzione per i bambini con disabilità. Tali misure consistono: nell’individuare il numero di bambini con disabilità ed i loro bisogni; nel mettere a punto strategie per rendere gli edifici scolastici accessibili; nell’adeguare i programmi di studio, le metodologie dell’insegnamento ed i materiali didattici, al fine di soddisfare questi bisogni; anche nel migliorare le capacità d’insegnamento, sia mettendo a disposizione educatori esperti dei bisogni dei bambini con disabilità sia attingendo alle risorse dei genitori e delle comunità di riferimento. Tutte queste misure devono essere supportate da risorse finanziarie appropriate e sufficienti (36).
Supporto ai bambini con spina bifida Circa la metà dei bambini e dei giovani adulti con mielomeningocele associato ad idrocefalo sono probabilmente inseriti in programmi di educazione speciale con scarsi risultati formativi, mentre gli altri raggiungono risultati simili a 182
quelli degli studenti senza disabilità (17). La sfida sarebbe quella di creare condizioni all’interno del contesto scolastico ordinario che favoriscano l’apprendimento per tutti i bambini con spina bifida. Nonostante le complicanze mediche a cui i bambini con spina bifida sono soggetti – tra cui convulsioni e incontinenza della vescica e dell’intestino – nei contesti educativi ben preparati e con adeguate risorse, questi studenti possono accedere all’istruzione primaria e secondaria e diplomarsi con la stessa frequenza della popolazione generale di bambini (24,40). E’ necessario ulteriore approfondimento su come creare un ambiente che aiuti i bambini con spina bifida. Occorre altro lavoro anche per rafforzare la fiducia in sé stessi e l’indipendenza di questi bambini (41). Nel corso di un campeggio di una settimana, è stato condotto un piccolo studio per valutare la capacità di autogestione, di elaborare obiettivi ed altre capacità autonomiche, che ha dimostrato che gli sforzi volti a superare la mancanza di fiducia in sé stessi possono avere un grande successo (42). La maggior parte dei bambini con spina bifida può frequentare con successo le scuole ordinarie e ottenere buoni risultati formativi. Pertanto è necessario uno sforzo coordinato che coinvolga insegnanti, dirigenti scolastici e genitori, volto ad assistere questi bambini e stimolare le motivazioni interiori e l’autonomia in quanto condizioni per la costruzione di relazioni sociali positive nell’ambito delle scuole ordinarie (43, 44). Anche se la situazione dei bambini con spina bifida nelle zone più povere del mondo può essere estremamente difficile, nell’Africa Orientale sono stati compiuti progressi in maniera sensibile al contesto culturale grazie alla sinergia tra gli strumenti di sostegno della comunità ed i genitori. (45).
Ritornare a scuola dopo la lesione Ritornare a scuola il prima possibile dopo la lesione deve essere un obiettivo prioritario della riabilitazione, e garantire la continuità scolastica dovrebbe far parte degli obiettivi del processo
Capitolo 8 Istruzione e lavoro
riabilitativo (26,32,46,47). Si è riscontrato che l’istruzione è spesso associata ad alti livelli di partecipazione sociale, occupazione, a più alti livelli di vita indipendente e ad una maggiore soddisfazione di vita negli adulti che hanno subito la LM durante gli anni d’istruzione della scuola primaria o secondaria (48,49). La migliore soluzione per tutti i bambini è quella di frequentare la scuola ordinaria. La seconda opzione, che si dovrebbe prendere in considerazione se un bambino con LM dovesse aver bisogno di un maggiore sostegno nell’apprendimento o se dovesse perdere le lezioni perché costretto ad abbandonare la classe troppo frequentemente per la fisioterapia o terapia occupazionale (29), è l’insegnamento a domicilio o lo studio individuale oltre alle regolari prove (da svolgere) in classe. Uno studio recente sull’esperienza scolastica di bambini con LM a Londra (30) ha sottolineato i seguenti fattori chiave di successo: ■ incontro conoscitivo da realizzarsi quanto prima tra bambino, genitore e personale scolastico con il coinvolgimento dei professionisti della riabilitazione; ■ adattamenti e accomodamenti programmati e non stigmatizzanti da realizzarsi prima dell’arrivo del bambino, per assicurare l’accesso a tutte le aree della scuola; ■ programmazione completamente accessibile, attraverso cui i dirigenti scolastici possano garantire l’inclusione dello studente in tutte le attività scolastiche, comprese le attività di educazione motoria (50) e le gite scolastiche; ■ formazione sulla lesione midollare e sulle condizioni ad essa associate fornita in sede per tutto il personale, insieme a programmi educativi adatti all’età dei compagni di scuola, per incoraggiare l’accettazione delle differenze. Questo ed altri studi simili (29,32,51) hanno confermato che è necessario adottare strategie per gli studenti e per i loro genitori per far fronte alle preoccupazioni e gestire i problemi in un contesto informale (ad es. un evento sociale serale) prima ancora che lo studente si iscriva a scuola.
I professionisti della riabilitazione dovrebbero essere presenti in questi momenti perché i dati suggeriscono che il loro supporto costituisce un fattore importante per la buona riuscita del reinserimento scolastico del bambino e per la sua partecipazione alla vita scolastica. (52, 53). Anche la consulenza alla pari si è dimostrata un buon modo per motivare i giovani adulti a riprendere o a continuare gli studi dopo la lesione (54). Atteggiamenti iperprotettivi sarebbero da sconsigliare (30).
La transizione scolastica Per i bambini con disabilità, il passaggio dalla scuola dell’obbligo al grado d’istruzione post-secondaria è più stressante che per gli altri bambini, a causa delle sfide di adattamento e di accomodamento in nuovi contesti e situazioni. Persone con più fonti di sostegno affrontano meglio la transizione rispetto a coloro che ne sono prive (25). Anche la disponibilità di una tecnologia assistiva adeguata è essenziale per una transizione agevole (55). I genitori possono ricoprire un importante ruolo di motivazione e di rafforzamento della fiducia durante la fase di transizione. La consulenza alla pari per affrontare il trauma della transizione dei bambini con LM (54) e le risorse del web che la famiglia e il bambino possono utilizzare insieme per accrescere la fiducia in sé e rafforzare la propria indipendenza (41) sono alcuni degli sviluppi promettenti per la preparazione emotiva e psicologica. Nel rapporto di sintesi del 2004 (56), lo United States National Center on Secondary Education and Transition (NCSET) [Centro Statunitense per l’Educazione Secondaria e la Transizione] ha delineato alcune potenziali soluzioni alle sfide più importanti poste dalla transizione, ossia: ■ promuovere l’autodeterminazione e la self-advocacy degli studenti includendo nel programma di studio generale lo sviluppo delle competenze professionali;
183
Prospettive Internazionali sulla lesione del midollo spinale
■ garantire agli studenti l’accesso al programma
di studio generale impiegando i principi dell’universal design per rendere le aule, i programmi di studio e le valutazioni fruibili dal maggior numero di studenti possibile senza la necessità di ulteriori aggiustamenti o modifiche; ■ far aumentare i tassi di completamento scolastico di studenti con disabilità sviluppando metodi e procedure per l’identificazione e il reperimento di dati basati sulla ricerca circa le migliori pratiche di prevenzione e intervento contro l’abbandono scolastico; ■ incrementare la partecipazione informata dei genitori e il loro coinvolgimento nel piano educativo, nella pianificazione della vita e nel processo decisionale; ■ utilizzare metodi come la formazione trasversale tra insegnanti curriculari e quelli di sostegno, al fine di promuovere una collaborazione tra educazione generale ed educazione speciale nell’ambito della valutazione dello studente, nei piani educativi individuali e nell’insegnamento. Un rapporto dell’OCSE sui problemi del passaggio all’università e al college ha stabilito che per colmare il divario tra l’istruzione secondaria e terziaria (o specialistica) sono necessari sforzi di cooperazione da entrambi i livelli d’istruzione (33): ■ le scuole secondarie devono fornire consulenza e altre risorse, la cui efficacia deve essere dimostrabile; ■ I College e le università devono rivedere le loro strategie di ammissione e gli accomodamenti scolastici per facilitare l’accesso e il successo formativo degli studenti con disabilità. La transizione dovrebbe essere coordinata sia dal centro, con servizi di supporto alla disabilità afferenti all’università nel suo complesso, e sia all’interno dei singoli dipartimenti interessati, e con una programmazione anticipata degli 184
adattamenti da porre in essere. Tali adattamenti comprendono i c.d. “note-takers”, i tutor, ausili tecnologici, adeguamenti strutturali delle aule ed interventi per la vita indipendente (31, 58, 59). Con riferimento ai Paesi a basso e medio reddito, nel 2006 è stato istituito il Consortium for Research on Educational Access, Transitions and Equity (CREATE) [Consorzio per la Ricerca sull’Accesso, Transizioni ed Equità nell’Istruzione] come partnership tra gli istituti di ricerca del Banglsdesh, Ghana, India, Sud Africa e Regno Unito. La prima monografia del CREATE ha disposto un programma di ricerca basato su una classificazione delle “zone di esclusione” dei bambini con disabilità – dalla totale esclusione all’ingresso nella scuola secondaria ma con il rischio dell’abbandono prima del compimento del ciclo scolastico – e si è espressa a favore di politiche educative mirate a queste diverse situazioni (60). Una ulteriore monografia ha messo in luce le sfide specifiche dell’insegnamento e le potenziali risposte strategiche in tutta l’Africa (14), evidenziando come gli svantaggi legati al genere complicano ulteriormente la sfida affrontata da bambini con LM.
Ridurre le barriere fisiche La ricerca ha dimostrato che le barriere alla mobilità di base sono fattori chiave che limitano la partecipazione degli studenti con paraplegia in Sud Africa (61) e dei bambini con spina bifida in Malaysia (62). Nella Repubblica Unita di Tanzania, l’accesso è difficile perché molte scuole sono costruite su basamenti per proteggerle durante la stagione delle piogge, e, all’interno delle scuole, i servizi igienici non sono accessibili e le porte d’ingresso raramente sono larghe abbastanza per farvi accedere le carrozzine (63). Nel Regno Unito, uno studio ha evidenziato la presenza di barriere come gradini o rampe troppo ripidi, l’assenza di servizi igienici appropriati, e la mancanza di posti auto riservati, tutti ostacoli che impediscono agli studenti in carrozzina di utilizzare le aule, le mense, le biblioteche e le
Capitolo 8 Istruzione e lavoro
strutture sportive (30). Le deviazioni di accesso e gli ostacoli impediscono agli studenti di arrivare in orario alle lezioni (64). I trasporti inaccessibili sono particolarmente gravosi per i bambini con difficoltà motorie che non possono arrivare a scuola da soli a causa di distanze troppo grandi o di percorsi rurali irregolari o di strade allagate durante la stagione delle piogge (61). Molte di queste barriere possono essere superate con una programmazione e politiche migliori (33, 65, 66). Anche quando le risorse sono limitate, è possibile fare la differenza dando priorità alla rimozione di barriere fisiche entro un dato periodo di tempo, come in Kenya dove il governo conta di iniziare entro il 2015 il lavoro di installazione delle rampe e di altri adeguamenti nelle scuole locali (67). Nel 2003, la città di Lisbona, Portogallo, ha lanciato un programma intitolato Escola Aberta (“scuola aperta”) che comprende una strategia ad ampio raggio per l’eliminazione graduale delle barriere nelle scuole primarie (68).
pari sulle differenti soluzioni di tecnologia assistiva (70) e di permettere alle persone da poco disabili di riflettere a fondo sulle difficoltà. Sebbene i computer e altre tecnologie possano dare grandi benefici ad un bambino con LM, spesso è necessaria la figura di un insegnante ben istruito o di un assistente in aula che lo aiuti ad utilizzarli (29, 71).
Finanziare l’istruzione e gli adattamenti Gli adattamenti, sia che si tratti di attrezzature o di personale di supporto, necessitano di finanziamenti sicuri. Nei Paesi ad alto reddito, esistono molte fonti potenziali di fondi stanziati per studenti con disabilità, per esempio sovvenzioni o prestiti governativi destinati all’istruzione, borse di studio finanziate dallo Stato e finanziamenti supplementari, bandi per borse di studio universitarie, fondi per l’istruzione e borse di studio private, e assicurazioni private (33). Negli Stati Uniti d’America, il 78% del budget per il supporto alla disabilità per l’istruzione terziaria è destinato a finanziare borse di studio o prestiti a persone con disabilità (33), e vi è inoltre una varietà di piani federali volti a finanziare la tecnologia assistiva per l’istruzione (72). Nel Regno Unito, il Disabled Students Allowance [Indennità per studenti con disabilità] provvede a pagamenti diretti esentasse per attrezzature specifiche per l’istruzione, assistenti personali e costi di viaggio aggiuntivi. (73). In Irlanda, i fondi governativi vengono distribuiti a college e università, che sono i principali responsabili dell’allocazione di tali fondi tra gli studenti (74). Un ulteriore approccio è quello di assicurare che i costi aggiuntivi per lo studente con LM vengano compensati da prestiti individuali o da borse di studio parziali conferite caso per caso, come in Francia o in Norvegia, con la previsione di convertire tali prestiti in contributi a fondo perduto nel momento in cui lo studente non sia in grado di ripagare il prestito (33).
Accomodamenti ragionevoli Anche se i bisogni variano considerevolmente, alcuni bambini con LM possono solo raggiungere il livello di indipendenza necessario per frequentare la scuola ed ottenere il pieno beneficio dell’istruzione con qualche forma di accomodamento. Potrebbe trattarsi di un assistente in aula o di tecnologia assistiva che va dai dispositivi a bassa tecnologia, come manici per matita, a strumenti d’alta tecnologia come sistemi di riconoscimento ottico dei caratteri o finanche il braccio robotico altamente sofisticato per bambini con un controllo limitato della parte superiore del corpo (69). Tutti questi strumenti possono valorizzare, o semplicemente rendere possibile, il rendimento scolastico del bambino e la sua presenza in aula. La migliore fonte d’informazione su cosa sia necessario e quale tecnologia effettivamente funzioni è l’esperienza delle persone che utilizzano le attrezzature. Un progetto canadese offre una guida al dibattito con lo scopo di agevolare la condivisione di informazioni tra
185
Prospettive Internazionali sulla lesione del midollo spinale
Nei Paesi a basso reddito, è improbabile che vi siano sistemi di finanziamento specializzati disponibili per studenti con disabilità. Sebbene gli studi abbiano dimostrato che l’integrazione di bambini con disabilità nelle scuole sia efficace dal punto di vista dei costi, anche tenendo conto dei costi aggiuntivi riservati agli accomodamenti (si veda lo studio in (75)), molti Paesi non sono in grado di sfruttare tali potenziali risparmi. In teoria, i Paesi a basso reddito hanno quantomeno il vantaggio di poter vedere come hanno funzionato o fallito le diverse strategie di finanziamento nei contesti ad alto reddito (76). L’Uganda, per esempio, ha messo insieme gli elementi di diversi approcci inclusivi di finanziamento all’istruzione dall’Europa e dagli USA al fine di produrre buoni risultati per i suoi bambini disabili (37). Adottare i modelli di finanziamento dei Paesi ad alto reddito, però, potrebbe non essere il migliore approccio poiché l’obiettivo primario d’istruzione in un contesto rurale è presumibilmente quello di preparare gli individui con disabilità a vivere e lavorare nella propria comunità, il che potrebbe significare che i migliori sistemi di finanziamento siano più strettamente collegati con i bisogni di quella stessa comunità (39).
aiuto, i gruppi di supporto alla LM e le ONG sono componenti vitali della rete sociale che possono, attraverso la condivisione di esperienze comuni, giocare un importante ruolo di assistenza agli studenti ed alle loro famiglie. Nel Regno Unito, il Back Up Trust gestisce un servizio di tutoraggio per persone con LM, e assegna consiglieri a coloro che necessitano di suggerimenti sull’adattamento alla vita con LM, il ritorno a scuola ed altre problematiche (79). Un ruolo simile è rivestito da altri gruppi in altri Paesi, compresi alcuni di quelli con risorse limitate da spendere per qualsiasi aspetto della vita con disabilità. Il National Resource Centre for Inclusion [Centro Nazionale di Risorse per l’Inclusione] dell’India, che fa parte di Able Disabled All People Together (ADAPT) [Tutte le Persone Abili e Disabili Insieme], ha sede a Mumbai da dove fornisce supporto e tutoraggio ai bambini con disabilità dal 1972.
Affrontare le barriere attitudinali Le difficoltà che i bambini e i giovani con spina bifida o con LM incontrano quando rientrano a scuola dopo la riabilitazione, o quando incominciano la scuola per la prima volta, non sono semplicemente fisiche ed istituzionali ma anche attitudinali. Il successo nella partecipazione all’istruzione presuppone che la scarsa conoscenza ed i pregiudizi sulla LM siano superati. I bambini e i giovani con LM, e le loro famiglie, devono inoltre sapere che cosa è la LM e cosa dovrebbero aspettarsi quando tornano a scuola o passano dall’istruzione secondaria a quella post-secondaria.
Supporto sociale Per qualsiasi giovane in fase d’istruzione secondaria o specialistica, l’indipendenza è determinata in genere dalla presenza di una rete di supporto sociale proveniente da familiari, amici e da i propri pari. L’interruzione causata dalla LM può voler dire che un giovane perda contatto con gli amici, e il tempo trascorso lontano da scuola può portare ad un distacco generale dalla società. In genere, il supporto sociale è un fattore determinante per la soddisfazione di vita, per la salute e perfino per la mortalità di persone con LM (77). I sistemi di supporto informale hanno dimostrato di essere utili per i bambini con LM quando tornano a scuola e alla vita sociale (54, 59), e l’interazione coi pari con LM risulta particolarmente importante. I gruppi di mutuo 186
Gli studenti con LM e le loro famiglie
Quando i bambini con LM pensano al rientro a scuola, possono temere di non essere accettati dai loro compagni, e ci sono alcuni studi secondo cui i bambini possono incontrare difficoltà nel far fronte alla LM e manifestare segnali di disadattamento, ansia e depressione (23,80) o perfino un senso di perdita di controllo (81). Se tutto ciò non viene affrontato, può portare ad uno stato di maggiore isolamento, solitudine, mancanza
Capitolo 8 Istruzione e lavoro
di amici, ansia per il futuro e, di conseguenza, ad un peggioramento nel rendimento scolastico (27). I bambini con LM che tornano a scuola devono conoscere le caratteristiche della scuola che frequenteranno e le attività ordinarie alle quali prenderanno parte – ovvero, gli aspetti che riguardano direttamente loro, piuttosto che gli insegnanti o i genitori (51). Perciò ascoltare i bisogni dei bambini con LM può essere più importante di quello che i genitori, insegnanti ed altri professionisti ritengano giusto per loro. Nel corso della carriera scolastica gli studenti con LM, così come i loro compagni, avranno bisogno di servizi di consulenza e di orientamento professionale che facilitino il passaggio all’istruzione superiore ed in seguito al mondo del lavoro (53). I bambini con LM e le loro famiglie possono sfruttare le risorse in rete che forniscono informazioni mediche di base sulla LM o la spina bifida, in particolare quelle relative alle tecniche di autogestione (41). I gruppi di supporto alla pari esistono in molti paesi e condividono informazioni e preoccupazioni comuni che sono molto importanti per le famiglie. I genitori possono essere comprensibilmente preoccupati per la sicurezza del bambino a scuola e per la sua accettazione nel gruppo dei pari (27), ma dato che un atteggiamento iperprotettivo può isolare ulteriormente il bambino con LM (26), gli esperti della riabilitazione e gli insegnanti dovrebbero consigliare ai genitori di trovare gruppi di sostegno per attenuare le loro paure.
Insegnanti, dirigenti scolastici e compagni
Gli atteggiamenti dei presidi e degli insegnanti sono determinanti per promuovere e gestire un ambiente inclusivo, possono essere influenzati positivamente da strategie informative e di supporto ben programmate (39,50,61,82). In genere, gli atteggiamenti degli insegnanti sono più positivi verso studenti con disabilità motorie rispetto a quelli con disabilità cognitive(83). E’ stato mostrato, in uno studio dedicato, che prevedere corsi di base sulla “Comprensione della
condizione della disabilità” per insegnanti, personale amministrativo e studenti può risultare, ai fini del percorso di integrazione sociale, importante quasi quanto l’adattamento dell’ambiente (84). Ad esempio, il Centro per la Tecnologia Assistiva e l’Accessibilità Ambientale, della Facoltà di Architettura del Georgia Technology College, propone corsi gratuiti di formazione online per insegnanti di matematica e scienze delle scuole superiori sull’adeguamento ed adattamento delle aule, dei test e dei laboratori sulla tecnologia assistiva, sulle leggi e sulle politiche (70). Gli insegnanti e gli studenti, che non conoscono le implicazioni della LM e non sanno come essere di supporto, trarrebbero beneficio nell’apprendere informazioni basilari sulla disabilità in genere e sulla LM in particolare. Esistono risorse facilmente accessibili ed utilizzabili, per acquisire informazioni di base sulla disabilità a scuola e sulla LM in particolare. Ad esempio, l’UNESCO ha fornito una serie di strumenti per creare ambienti inclusivi favorevoli all’apprendimento (87), mentre l’OCSE offre risorse che spiegano i passi necessari da compiere da parte degli insegnanti, dirigenti scolastici e studenti per sostenere la diversità nell’ambiente scolastico (88). Gli insegnanti svolgono un ruolo diretto e determinante nel rendere concreta l’inclusione scolastica. Questo è particolarmente vero per gli insegnanti di educazione motoria che spesso devono affrontare la sfida di integrare un bambino con grave disabilità nelle attività della classe dovendo aver presente in egual misura l’obiettivo dell’integrazione, gli esercizi fisici appropriati alle limitazioni funzionali e gli aspetti riguardanti la sicurezza. Uno studio svedese ha mostrato che il successo nell’affrontare questa sfida è dato dalla formazione adeguata, dal sostegno dell’amministrazione scolastica e dalla presenza di adeguate risorse (50). Oggigiorno c’è una crescente convinzione che gli istituti di formazione rivolti agli insegnanti devono assicurarsi che i nuovi docenti siano preparati a lavorare in modo efficace nelle classi dove ci sono studenti con disabilità (89).
187
Prospettive Internazionali sulla lesione del midollo spinale
E’ evidente inoltre che gli insegnanti acquisirebbero e utilizzerebbero più facilmente le informazioni sulla disabilità del bambino per favorirne l’integrazione nelle attività scolastiche, se tali informazioni non venissero presentate in termini di etichette diagnostiche; ad es. bambino con spina bifida, ma piuttosto in termini di problemi funzionali e risorse che fanno la differenza nella modalità di insegnamento (83). In generale, non sono richieste conoscenze mediche sulla LM, a parte quelle relative a condizioni di salute come la disreflessia autonomica, che possono mettere a rischio la vita delle PLM (15). Gli insegnanti dovrebbero anche essere a conoscenza delle complicazioni legate alla spina bifida e quelle associate ad un danno cerebrale traumatico (19). Gli insegnanti devono sapere che spesso i bambini con LM lottano per l’autodeterminazione e l’indipendenza e che non è facile per loro parlare apertamente di questi problemi (90). Si tratta di un fenomeno per il quale i terapisti della riabilitazione dovrebbero essere preparati (78). Gli assistenti scolastici, che spesso interagiscono più direttamente con i bambini con disabilità nella scuola primaria, dovrebbero ricevere formazione ed informazioni circa la LM e le sue implicazioni anche di carattere emotivo e psicologico (30).
della disoccupazione o sottoccupazione di persone con disabilità in paesi rappresentativi a basso e medio reddito vanno dal 3 al 5% del prodotto interno lordo (91). ■ Il lavoro è un elemento chiave del percorso riabilitativo per le PLM (92) perché ad essa corrisponde un maggiore adattamento alla LM, soddisfazione di vita, senso di scopo, stimoli mentali, relazioni sociali e senso del benessere (93–96). ■ Il basso reddito associato con la disoccupazione e la sottoccupazione implica tassi più alti di mortalità dopo l’insorgere della LM (77,97) e, in genere, uno stato di salute cagionevole (93,98–100). Una recente analisi sistematica di 50 studi sulla LM e sulla disoccupazione ha mostrato che il tasso globale medio di occupazione delle PLM era solamente 37%, sebbene il numero di persone occupate ad un certo momento dopo la lesione era pari al 68% (101). L’attuale tasso medio di occupazione di PLM osservato per continente è risultato più alto in Europa (51%) e più basso in Nord America (30%). Per i paesi dell’OCSE, questi tassi medi sono paragonabili ai tassi di disoccupazione delle persone con disabilità molto gravi (102). Un altro studio a livello mondiale sul ritorno a lavoro delle PLM negli anni 2000–2006 ha fatto registrare tassi di reinserimento lavorativo che oscillano dal 21% al 67%, e livelli di occupazione complessiva che compresi tra l’11,5% ed il 74% (103). L’ampia variabilità dei risultati emersi in entrambi gli studi è attribuibile principalmente alle diverse definizioni del concetto di occupazione. Sebbene esistano buoni dati sui tassi di occupazione di PLM nei paesi ad alto reddito, lo stesso non avviene per i paesi a basso e medio reddito (104) dove si riscontrano tassi di occupazione variabili. Alcuni studi mostrano che in circa la metà dei casi esaminati le persone con LM tornano a lavorare: 57% in Malaysia (105), 50% in Bangladesh (106) e 41% in India (107). Tuttavia, i dati relativi ad altre zone sono nettamente
Lesione al midollo spinale e partecipazione al lavoro La maggior parte delle PLM può lavorare ed essere una componente produttiva della società se ci sono appropriati accomodamenti nel posto di lavoro laddove richiesti. Purtroppo molte persone con LM o con altre disabilità sono escluse dalle opportunità di lavoro e di sostentamento, conseguentemente vivono insieme alle loro famiglie in condizioni di povertà e sono marginalizzate dal resto della società. Tale esclusione costituisce non solo una difficoltà economica per le PLM, ma è problematica anche per altri motivi: ■ L’esclusione è uno spreco di risorse umane preziose. Le stime dell’impatto economico 188
Capitolo 8 Istruzione e lavoro
peggiori. Per esempio, un ulteriore studio condotto su 136 PLM accolte al Centro nazionale di riabilitazione dello Zimbabwe indicava che solamente il 13% dei partecipanti, di cui uno tetraplegico, era occupato (108). Le statistiche apparentemente buone possono inoltre oscurare il fatto che il lavoro disponibile è spesso mal pagato (109). Tra i diversi dati emersi la necessità di fornire supporto nel reinserimento lavorativo costituisce uno degli aspetti più rilevanti. Vista la maggiore probabilità di insorgenza della LM non-traumatica in età avanzata, i dati relativi all’occupazione riguardano principalmente la LM traumatica. Fanno eccezione i giovani con spina bifida, colpiti in maniera piuttosto massiccia dalla disoccupazione. Anche se le informazioni sono disponibili solamente per l’Europa e per gli Stati Uniti i tassi di occupazione a tempo pieno o parziale per giovani con spina bifida vanno dal 36 al 41%, rispetto al 75% per quelli senza disabilità (40, 44) o con altre condizioni gravi croniche (110). Un ampio studio condotto nei Paesi Bassi ha riscontrato un tasso relativamente alto di occupazione (62,5%), ma molti degli intervistati lavoravano in ambienti protetti e non erano impiegati nella forza lavoro generale (43). Mentre i dati sull’occupazione delle PLM nei Paesi a basso e medio reddito sono scarsi, è chiaro che anche negli ambienti ad alto reddito il tasso di disoccupazione dopo l’insorgere della LM è molto alto. Saranno necessari ulteriori approfondimenti sulle cause della persistente disoccupazione, così come occorre distinguere, se possibile, le barriere all’occupazione associate con la LM dalle barriere associate con la disabilità in generale (111).
Affrontare le barriere all’occupazione Sono disponibili buoni dati dai Paesi ad alto reddito circa i fattori determinanti l’occupazione e i fattori che impediscono alle PLM di ritornare al lavoro dopo la lesione o di ottenere un primo lavoro (96,103,112–115). Sebbene il genere non
sia un fattore affidabile che determina l’occupazione (92,98), l’età all’insorgenza della lesione e il livello di istruzione raggiunto prima della lesione, invece, sono indicatori stabili (48,98,116–120). Più una persona è giovane, istruita, e con un livello di lesione minore, e prima potrà tornare al lavoro dopo l’infortunio, e maggiori saranno le probabilità che la persona sia occupata (120,121). Anche la etnia è un significativo fattore determinante negli Stati Uniti, dove è molto più probabile che i bianchi siano occupati rispetto agli altri gruppi (81,120–123). Più la lesione e le difficoltà funzionali sono gravi, minore è la possibilità che la persona sia occupata (48,98,117,124–127). Per tutti i livelli di gravità della lesione, i tassi di occupazione migliorano con il tempo (81,128–130). Tuttavia, le patologie secondarie, particolarmente quando necessitano il ricovero, riducono le possibilità di ottenere e mantenere un lavoro (100,122,131). In ogni caso, le barriere principali all’occupazione sono ambientali piuttosto che demografiche, biomediche o psicologiche (132). L’esame e l’analisi dei dati rilevati sui fattori determinanti per il ritorno al lavoro, realizzati dal progetto Spinal Cord Injury Rehabilitation Evidence (SCIRE), classificano la discriminazione vera e propria e l’inaccessibilità del posto di lavoro come i fattori negativi più importanti per l’occupazione (115). Anche gli studi che sottolineano i problemi di salute, come l’inabilità funzionale di eseguire le mansioni lavorative o la mancanza di forza o di resistenza, indicano che queste difficoltà diventano problemi unicamente se la natura del lavoro o del posto di lavoro non possono essere modificati per consentire alla PLM di compiere il lavoro prescelto (98,133,134). In generale, la ricerca ha ampiamente mostrato che le PLM spesso non possono lavorare a causa della mancanza di trasporti accessibili per recarsi al lavoro (43, 103, 115). Si tratta di un problema mondiale, particolarmente vero per le zone rurali, che hanno tassi di disoccupazione delle PLM significativamente più alti rispetto alle aree urbane (34,131,135,136). 189
Prospettive Internazionali sulla lesione del midollo spinale
Le cause della disoccupazione delle PLM sono complesse come pure le cause per cui non si raggiunge l’autosufficienza economica. Fra tutti gli studi si trova una notevole variabilità ed è difficile predire il ritorno al lavoro o l’accesso al sostegno finanziario, perché anche se vengono superati tutti gli ostacoli che impediscono ad un giovane di ritornare al lavoro, una barriera ambientale o logistica apparentemente banale sul posto di lavoro può rendere il ritorno impossibile (112,114). Tuttavia, sembra che le quattro categorie che spiegano l’occupazione e la sicurezza economica siano: la formazione professionale e l’assistenza per l’occupazione; i pregiudizi o la discriminazione nei confronti delle PLM; adattamento del posto di lavoro; e la garanzia di autosufficienza economica.
La formazione professionale e l’occupazione assistita La riabilitazione professionale, che è un approccio multidisciplinare che mira a far tornare un lavoratore all’occupazione remunerata o facilitare la sua partecipazione al mercato del lavoro, comprende normalmente servizi più specializzati quali l’orientamento e la consulenza professionale, la formazione ed il collocamento mirato, allo scopo di ottimizzare le possibilità di occupazione (137). Questo approccio si è dimostrato molto efficace nel processo di reinserimento lavorativo o nella preparazione al primo impiego, per diverse condizioni di disabilità (138,139). Il recupero funzionale dopo la LM traumatica può richiedere fino a 12 mesi dopo l’evento lesivo e le PLM avranno bisogno di ancora più tempo per affrontare le necessità mediche e l’adattamento alla famiglia e all’ambiente domestico. Può sembrare non realistico incominciare la pianificazione professionale attiva durante la riabilitazione in ospedale o nei primi mesi dopo la dimissione (113). Tuttavia ci sono prove convincenti che se la riabilitazione professionale incomincia presto ed è coordinata con gli sforzi di adattamento alla vita in comunità, c’è una migliore possibilità di 190
ottenere e mantenere il lavoro (48,138,139). Gli obiettivi professionali e le aspettative di uno stile di vita produttivo dovrebbero essere incluse in una fase iniziale del piano complessivo di riabilitazione in preparazione ai più intensi sforzi successivi dei consulenti professionali (140). Sfortunatamente, anche nei Paesi ad alto reddito, la riabilitazione professionale e la consulenza non sono sempre disponibili per le PLM (96,141) e per quanto riguarda l’esigenza di questi servizi dovrebbe essere promossa a livello politico. Le PLM possono aver bisogno di servizi specializzati per superare le specifiche questioni ergonomiche e tecniche che possono incontrare (142, 143). Inoltre, esistono prove convincenti, nel caso di LM, che un fattore importante per il ritorno al lavoro è la disponibilità di servizi per l’inserimento lavorativo, forniti da consulenti professionali: in particolare, la ricerca e la rete di lavoro; la disponibilità di informazioni descrittive del lavoro per declinarle sulle capacità e le debolezze dell’individuo; come fare la domanda e prepararsi per il colloquio di lavoro. Una parte importante di questi servizi è rappresentata dalla disponibilità di informazioni circa le opportunità di lavoro, che includano i prerequisiti professionali e formativi, per facilitare il processo di scelta della professione (94,143). La necessità di avere il supporto sociale generale per le PLM è riconosciuta come un fattore significativo perchè il reinserimento lavorativo abbia esito positivo (132). Dopo una lesione traumatica molti credono di non essere più capaci di eseguire le mansioni necessarie per il lavoro (124,144,145). I fattori psicologici, che vanno da una riduzione del senso di controllo sulla vita e sull’autostima fino alla depressione, possono rendere ancora più difficile il reimpiego (146–148). Gravi malattie mentali come la depressione possono richiedere un sostegno professionale, ma in molti casi il supporto psicosociale tra pari, e da familiari ed amici intimi può essere molto efficace per incoraggiare la persona nel tornare al lavoro (149,150). Tutto ciò è molto importante
Capitolo 8 Istruzione e lavoro
in contesti con poche risorse dove in genere ci si affida di più alle reti di supporto informale (109). Per i bambini ed adolescenti, specialmente per quelli con spina bifida, i consulenti professionali devono essere coinvolti in un ampio programma di transizione dalla scuola al lavoro. Sebbene l’obiettivo ultimo sia quello di sviluppare strategie finalizzate alla futura occupazione dei giovani, l’interesse primario sarebbe quello di mantenerli a scuola per poi proseguire nel percorso verso il lavoro (26, 54). Nei Paesi ad alto reddito per rispondere alla sfida del reinserimento lavorativo per persone con gravi danni connessi ad una condizione di disabilità come la lesione al midollo spinale, vi sono due tipologie generali di programmi di riabilitazione professionale. I programmi di transizione offrono servizi facilmente accessibili basati sull’aiuto alle persone per ottenere e mantenere lavori competitivi, conosciuti anche come “occupazione assistita” (143,151). L’accento è sulla formazione delle competenze per il lavoro, la consulenza per la preparazione al lavoro, ed i servizi di collocamento al lavoro, con i supporti e successivi controlli da parte dei consulenti professionali dopo l’inserimento lavorativo (96,128,152,153). I servizi di transizione, per loro stessa natura richiedono molte risorse e sono costosi, ma tali costi sono notevolmente ridotti se i servizi venissero attivati il prima possibile e se fossero integrati con gli altri servizi riabilitativi (96, 137). Il programma riabilitativo professionale Kaleidoscope, descritto nel Riquadro 8.1, offre un esempio di questo tipo di programma per le persone con LM. I programmi di sostegno all’occupazione assistita si basano sulle forze e sulle capacità di chi cerca il lavoro. Tali programmi di sostegno personalizzato per affrontare bisogni specifici nella ricerca e nella selezione di un lavoro adatto, forniscono supporto sul posto di lavoro e appoggio con il datore di lavoro quando la persona incomincia ad adattarsi al lavoro, e sostegno a lungo termine durante tutta l’esperienza lavorativa. (155). La chiave dell’approccio sono i servizi personalizzati dato che ogni PLM è diversa in
termini di funzionamento, competenze di lavoro, esperienza e necessità di trasporto, e ognuno ha bisogno di diversi adattamenti lavorativi. Sebbene la valutazione altamente personalizzata richieda molto tempo, ci sono prove che questo approccio non solo permette al consulente professionale di personalizzare meglio i servizi ai bisogni individuali, ma consente alle PLM di acquisire il controllo della propria vita (151). Anche se il modello dell’occupazione assistita è utilizzato principalmente nei Paesi ad alto reddito, uno degli esempi più riusciti di questo modello è quello del Centro per la riabilitazione dei paralizzati in Bangladesh (vedi Riquadro 8.2). Il modello del laboratorio protetto è il secondo tipo di programma di riabilitazione professionale. Si tratta di un approccio tradizionale in cui le persone con gravi disabilità hanno mansioni da compiere nell’ambito di un laboratorio gestito da specialisti professionisti. A volte si considera questa possibilità più realistica per persone con bisogni complessi e spesso viene offerta come primo passo verso un’occupazione più aperta. Il Riquadro 8.3 offre un esempio di questo tipo di programma in atto nel sud dell’India. I laboratori protetti che non sono direttamente collegati con i programmi di transizione al lavoro competitivo aumentano la segregazione per cui non costituiscono l’approccio ottimale per l’affermazione dei diritti umani delle PLM. Da tempo la consulenza alla pari tra PLM è considerata quale componente essenziale dei programmi professionali (140). Sebbene i primi approcci professionali erano controllati dalla riabilitazione professionale, la ricerca indica che un elevato livello di supporto professionale potrebbe essere invadente e che occorre maggiore coordinamento tra clienti ed imprese ed altri posti di lavoro a cui sperano di accedere. Il ruolo dei professionisti riabilitativi è quello di fare da collegamento tra datore di lavoro e cliente e di contrastare qualsiasi forma di discriminazione del datore di lavoro verso l’assunzione di persone con gravi disabilità (141,157). I professionisti riabilitativi dovrebbero sottolineare gli obiettivi 191
Prospettive Internazionali sulla lesione del midollo spinale
lavorativi della PLM, valutare le capacità funzionali della persona in relazione al lavoro alla luce del supporto disponibile, ed accettare il fatto che la pianificazione della carriera lavorativa è un processo continuo che non finisce quando si ottiene un lavoro specifico (143).
Il superamento dei pregiudizi riguardanti la lesione midollare I pregiudizi riguardanti la LM e le capacità delle PLM di saper competere nel mondo del lavoro, soprattutto tra datori di lavoro e colleghi, sono stati considerati spesso un fattore significativo
che influisce negativamente sulle prospettive di lavoro delle persone con disabilità in genere e delle PLM in particolare (114,124,140,152,158,159). Uno studio dal Bangladesh riporta che alcuni datori di lavoro percepiscono i potenziali lavoratori con LM come “malati” o “meno produttivi” (34). Nei Paesi Bassi, il 57% dei giovani adulti con spina bifida afferma di aver incontrato problemi nel trovare lavoro a causa degli atteggiamenti negativi dei datori di lavoro (43), il che è stato confermato da risultati simili di altri studi (25,41,160). In un classico studio sulla discriminazione sul posto di lavoro, la possibilità di essere assunti per i candidati senza disabilità era
Riquadro 8.1. Kaleidoscope, Burwood Hospital, Christchurch, Nuova Zelanda Kaleidoscope è un programma di primo intervento per la riabilitazione professionale intrapreso per rispondere all’alto tasso di disoccupazione tra le PLM. Kaleidoscope si basa sul modello di occupazione assistita ed ha quattro caratteristiche: 1. Accesso tempestivo a persone con gravi lesioni spinali e alle loro famiglie , che inizia, in genere, entro una o due settimane dopo un ricovero in fase acuta. Spesso le lesioni spinali richiedono un lungo periodo di ospedalizzazione per cui vi è ampia possibilità di incontrare le persone con lesione midollare e le loro famiglie. In questa fase l’attenzione primaria ricade, naturalmente, sulla riabilitazione medica della persona. Al contempo, si predispongono importanti basi per una professione futura e si costruisce l’aspettativa per la quale continuare a lavorare sia realistico e probabile. 2. La Pianificazione dettagliata della carriera dà alle persone l’opportunità di tracciare il percorso futuro che si sentono motivate a seguire. Nel caso in cui non fosse più possibile svolgere il proprio precedente lavoro, le persone potrebbero essere incerte rispetto a cosa li attenda nel futuro. Pianificare il futuro lavorativo della persona in base alla motivazione, all’esperienza, alle competenze e alle migliaia di possibilità lavorative esistenti aiuta a restituire a quella persona il desiderio di tornare ad essere parte pienamente ed attivamente della forza lavoro. 3. Il sostegno dopo il collocamento è fondamentale per assicurare che il ritorno al lavoro sia il più agevole possibile. Un obiettivo chiave del sostegno è quello di rendere il lavoratore auto-sufficiente in modo che la necessità del regolare sostegno continuativo si interrompa gradualmente. Tuttavia, è chiaro per tutti che, se richiesto, il sostegno sarà fornito in qualsiasi momento o anche qualora un piano di supporto continuativo dovesse presentarsi necessario un’altra volta. 4. Una comunità locale aziendale motivata e di supporto ha tanto da offrire alle persone che desiderano tornare al lavoro dopo una grave lesione o malattia. Kaleidoscope ha una rete composta da oltre 40 aziende locali in una varietà di settori. I datori di lavoro si sono resi disponibili per incontrarsi faccia a faccia per condividere informazioni circa la propria attività e per aiutare ad identificare una strategia per la ricerca di lavoro che supporti le persone ad ottenere una posizione in quel settore. Il programma Oho Ake (“svegliati” e “alzati”) è basato sugli stessi principi ed include persone con LM cronica che hanno vissuto la disoccupazione.
192
Capitolo 8 Istruzione e lavoro
di 1,78 volte maggiore rispetto alla loro controparte con disabilità. Si è dimostrato che più è visibile il problema fisico (ad es. la presenza della carrozzina) più è probabile che i datori di lavoro saranno restii all’assunzione (161). Il superamento della discriminazione nel lavoro richiede l’impegno di varare leggi contro la discriminazione insieme a processi legali per il risarcimento. Leggi come la Americans with Disabilities Act 1990 [Legge sugli Americani con Disabilità (1990)] (aggiornata nel 2007), sono sempre più diffuse nel mondo. Uno studio sull’applicazione di questa legge nel caso della LM ha
dimostrato che anche se il tasso di successo è molto basso, le PLM tendono ad avere un miglior esito nelle loro rivendicazioni rispetto ad altri gruppi con disabilità (162). La legislazione contro la discriminazione non è l’unica strada da percorrere. La ricerca rileva una tendenza verso atteggiamenti molto positivi da parte dei datori di lavoro nei confronti di lavoratori con disabilità, ma ciò non si traduce sempre in comportamenti positivi quando lavoratori specifici sono valutati per le loro mansioni (163, 164). Un ulteriore studio ha evidenziato che i datori di lavoro che hanno avuto esperienze
Riquadro 8.2. Centro per la Riabilitazione dei Paralitici (CRP) in Bangladesh Il Bangladesh è un Paese povero in cui quasi la metà dei suoi 150 milioni di abitanti vive al di sotto della soglia della povertà. Non esiste una rete generale di previdenza sociale e la maggior parte delle persone con disabilità non riceve assistenza finanziaria per le spese relative alla disabilità. Il Centro per la Riabilitazione dei Paralitici (CRP), una ONG specializzata nella riabilitazione di PLM, è stato istituito nel 1979 per rispondere al bisogno disperato di servizi riabilitativi per le persone con lesione spinale. Da allora il CRP è diventato un’organizzazione rispettata a livello internazionale che fornisce una larga gamma di servizi di supporto all’impiego tra cui riabilitazione fisica e psicologica, consulenza per il collocamento, riqualificazione professionale, assistenza per l’ottenimento di prestiti di microcredito per il lavoro autonomo, reintegrazione pianificata nella comunità, assicurazione per gli ambienti domestici sicuri ed informazione per i residenti locali sulla natura e sulle conseguenze della LM. La sede del CRP è a Savar. Esso gestisce anche due centri residenziali per la riqualificazione professionale (CRP-Gonokbari per donne e ragazze, e CRP-Gobindapur per pazienti esterni e servizi locali) come pure un centro per servizi medici, terapeutici e diagnostici nella capitale Dhaka. Il CRP gestisce 13 progetti locali di riabilitazione che sono inclusi nei programmi di prevenzione di incidenti e disabilità, così come nelle attività di patrocinio e di networking volte a promuovere le questioni relative alla LM. Inoltre, il CRP conduce campagne di sensibilizzazione e di pubblicità per abbattere le barriere e i luoghi comuni contro le PLM e le persone con altre disabilità.
Riquadro 8.3. Laboratori protetti per reduci di guerra con LM in India Due centri di riabilitazione paraplegica a Kirkee e Mohali, con rispettivamente 109 e 34 posti letto, sono gestiti per la riabilitazione di ex militari paraplegici e tetraplegici. I centri si basano su fondi fiduciari caritatevoli finanziati dal Consiglio Kendriya Sainik (che fa parte del Dipartimento di Ex-Militari nel Ministero della Difesa) e dal Ministero per la Giustizia Sociale e per la Responsabilizzazione. Tutte le persone in questi centri ricevono formazione professionale per acquisire competenze nella tessitura, nel lavoro a maglia, nella sartoria e nella produzione di candele. Lavorano in loco in laboratori protetti e ricevono piccoli stipendi mensili così da poter essere relativamente indipendenti da un punto di vista economico. I laboratori protetti presso questi centri sono considerati collocamenti professionali permanenti o semi-permanenti perché si presume che queste persone non siano in grado di trovare altri lavori nella comunità. L’attività degli ex militari in un laboratorio è da considerarsi una occupazione e un luogo dove andare a lavorare quotidianamente. I centri forniscono anche cure mediche, fisioterapia, esercizio fisico, sport e corsi di informatica, per permettere ai pazienti di acquisire fiducia in se stessi.
193
Prospettive Internazionali sulla lesione del midollo spinale
con persone con disabilità o che hanno acquisito conoscenza della stessa disabilità attraverso programmi di sensibilizzazione svolti da consulenti professionisti, assumono molto più facilmente persone con disabilità (158). Ciò suggerisce che i risultati lavorativi per le persone con disabilità possono migliorare se la comunità riabilitativa svolge un ruolo attivo nel dare supporto a datori di lavoro con meno esperienza sulla disabilità. Un studio recente ha dimostrato, contrariamente alle aspettative, che la percezione della discriminazione non era associata con una minore probabilità di tornare al lavoro, suggerendo che le PLM stanno sviluppando maggiore consapevolezza ed avendo più successo nel superare atteggiamenti discriminatori e pregiudiziali da parte dei datori di lavoro (145).
Assicurare l’adattamento del posto di lavoro Il buon esito del reinserimento lavorativo dipende dall’adattamento del posto di lavoro (95,99,101,103,113,165). Sebbene l’adattamento inizi con problemi relativi all’accessibilità fisica, il bisogno è più ampio e comprende l’integrazione della tecnologia assistiva nell’attività lavorativa e modifiche alla tipologia e all’ubicazione del lavoro. Alcuni esempi pratici di adattamenti adeguati alla LM derivano dalle stesse PLM: da un recente studio qualitativo su 266 persone con problemi motori e sensoriali che hanno iniziato a lavorare, è stato individuato un totale di 1553 adattamenti specifici e dettagliati (166). Sono disponibili parecchie informazioni su come rendere il posto di lavoro fisicamente accessibile, tra cui risorse gratuite sul web che forniscono informazioni molto dettagliate e pratiche, come il Jobs Accommodation Network (JAN), con sede negli Stati Uniti, un portale di informazioni pratiche per adattamenti innovativi e testati a favore delle persone con disabilità, incluse quelle con LM (167). Dal 2004, JAN ha condotto inoltre uno studio sui datori di lavoro per determinare i costi e i benefici delle modifiche sul posto di 194
lavoro, evidenziando i consistenti benefici per gli impiegati e mostrando che i vantaggi che il datore di lavoro riceve da questi adattamenti superano di gran lunga il loro costo (167). Alcuni esempi di modifiche sul posto di lavoro adeguate ai bisogni delle PLM sono: accessibilità per le carrozzine dal punto d’ingresso (in tutte le condizioni meteorologiche) alla postazione di lavoro e a tutte le altre aree necessarie per lo svolgimento del lavoro; porte allargate e passaggi liberi per gli utenti in carrozzina; modifiche alla postazione di lavoro, che includono scrivanie o tavoli regolabili in altezza; sistemi accessibili di archiviazione e di altre aree di lavoro; servizi accessibili come i WC e le aree per conferenze, per il pranzo ed il riposo (168). Per i lavoratori con LM gli adattamenti per carrozzine sono fondamentali, ma per la maggior parte dei lavori è altrettanto importante l’accesso alla tecnologia assistiva al fine di superare le limitazioni funzionali degli arti superiori ed inferiori associate alla LM. In uno studio condotto tra lavoratori con LM, la maggioranza riferiva che per compiere il proprio lavoro utilizzava telefoni adattati, lenti di ingrandimento ed altre tecnologie assistive, affermando che tali tecnologie aumentavano notevolmente la loro produttività e autostima (144). In particolare, molti studi dimostrano che le PLM usano il computer al lavoro più spesso della popolazione generale (169–172). Ciò rende essenziale la disponibilità e l’accessibilità di questi strumenti affinché il reinserimento lavorativo abbia successo. Per coloro che hanno difficoltà con la parte superiore del corpo, potrebbero essere necessari strumenti innovativi come gli emulatori con puntamento oculare, dove l’operatore con LM indossa una cuffia e muovendo la testa controlla i movimenti del cursore. Perché la tecnologia assistiva sia utile per le PLM deve essere integrata pienamente nel posto di lavoro. In parte questo è un questione che riguarda l’accessibilità fisica, ma gli esperti della riabilitazione professionale constatano sempre più come sia importante assicurarsi che i colleghi e i datori di lavoro comprendano la necessità di
Capitolo 8 Istruzione e lavoro
attrezzature specializzate, che forniscano agli operatori sufficienti informazioni riguardo l’utilizzo delle stesse, e che capiscano perché l’assistenza tecnica è fondamentale per la manutenzione o la riparazione di tali attrezzature, affinché il lavoro non venga interrotto (169,173). Qualche volta la tecnologia complessa non è né disponibile né necessaria, come nei casi in cui il lavoro può essere realizzato fornendo un assistente che aiuta nello svolgimento delle relative mansioni. In alcuni casi questo compito può essere svolto da animali di servizio addestrati per portare e prendere oggetti rendendo più facile lo svolgimento delle principali mansioni di lavoro (174). Essendo molto probabile che la lesione possa avere un impatto sul tipo di mansione da svolgere, un “adattamento ragionevole” potrebbe anche includere cambiamenti nella natura della mansione lavorativa. Le modalità di svolgimento delle mansioni richieste possono essere modificate, il lavoro può diventare part-time, o può essere modificato l’orario di servizio, con la possibilità per il lavoratore di andare via, quando necessario, per gestire la vescica o l’intestino o per riposare. Un recente studio europeo ha dimostrato che mentre il 60% delle persone giovani dopo la LM sono tornate a lavoro, quasi tutte hanno tratto vantaggio dalle modifiche delle condizioni di lavoro, tra cui la diminuzione della pressione sui tempi di consegna, orari flessibili e riduzione anche fino alla metà delle ore di lavoro (141). L’epoca di cambiamenti tecnologici ed economici insieme all’enfasi sull’equilibrio tra lavoro e vita fanno sì che le persone con disabilità non siano le uniche a voler lavorare in modo diverso. In alcuni Paesi, i governi incoraggiano attivamente programmi di flessibilità oraria e condivisione del posto di lavoro, di cui possono beneficiare anche le PLM (152). Il telelavoro, in cui l’attività è svolta a distanza utilizzando una varietà di tecnologie informatiche e comunicative, può costituire un modo per superare le difficoltà legate al trasporto, alle barriere fisiche dell’ambiente e alle limitazioni causate dalla salute, come la fatica provocata dalla LM
o dalle patologie secondarie (170). I vantaggi del telelavoro devono essere soppesati contro i rischi potenziali di isolamento sociale e di segregazione lavorativa. Il telelavoro potrebbe anche minare gli sforzi volti a rendere i sistemi di trasporto, gli edifici e le comunità più accessibili a persone con limitazioni motorie. Occorrerebbero ulteriori approfondimenti circa i vantaggi e gli svantaggi connessi a questo tema (111).
Lavoro autonomo In molti paesi a basso reddito, il lavoro autonomo, nella forma di produzione artigianale su scala ridotta o vendita di prodotti agricoli, è spesso fonte di reddito per persone con disabilità ed è un’opzione importante per le PLM (109). Anche nei paesi ad alto reddito il lavoro autonomo ha benefici potenziali per le PLM: ovvero, il lavoro a casa o nella comunità circostante evita le barriere di accesso e di trasporto, la discriminazione sul posto di lavoro e gli atteggiamenti negativi dei colleghi di lavoro e permette orari e condizioni di lavoro flessibili. I dati suggeriscono che le persone con problemi motori e muscoloscheletrici in particolare svolgono con maggiore probabilità il lavoro autonomo (159). Gli svantaggi del lavoro autonomo sono l’isolamento e il mancato sviluppo delle competenze, i livelli di reddito più bassi e il fatto che il costo degli ausili assistivi per il lavoro autonomo sono interamente a carico dell’individuo (171). La barriera più significativa al lavoro autonomo è l’onere economico iniziale per avviare un’attività sia che si tratti di capitale per le attrezzature o per la formazione. Uno ampio studio sulle opzioni di lavoro autonomo in Europa ha evidenziato che poiché i finanziatori privati in genere considerano rischiose le persone con disabilità, queste si rivolgono a familiari per ottenere i fondi. Nei paesi come il Regno Unito le persone con disabilità possono avvalersi di detrazioni fiscali e di altri sostegni al reddito relativi alla disabilità e a volte i prestiti per piccole imprese sono disponibili tramite le agenzie di lavoro (159). 195
Prospettive Internazionali sulla lesione del midollo spinale
Tuttavia, anche in Canada e nel Regno Unito, dove offrono assistenza finanziaria relativamente generosa nella forma di sovvenzioni, prestiti e detrazioni fiscali, l’utilizzo effettivo di questa forma di lavoro è scarso a causa della carenza d’informazione accessibile (159, 173). L’accesso a finanziamenti per avviare una piccola impresa può costituire una delle maggiori sfide per le PLM nei contesti a basso reddito. In questi paesi i sistemi di microfinanza sono stati determinanti per permettere alle persone con disabilità di guadagnare da vivere. La microfinanza riguarda la fornitura di servizi finanziari normali, compresi prestiti alle imprese, a persone e a piccole imprese che altrimenti non avrebbero accesso ai servizi bancari a prezzi convenienti. Un compendio esaustivo di studi e di prassi proveniente dall’Africa e dall’Asia ha concluso che le persone con disabilità non hanno potuto beneficiare in maniera equa dei programmi esistenti di microfinanza (176,177). Nel 2006 Handicap International ha svolto uno studio approfondito sull’accesso alle organizzazioni di microfinanza nei paesi poveri dell’Africa e dell’Asia e ha trovato che solamente lo 0,5% dei clienti di tali organizzazioni finanziarie aveva una disabilità (178). Mentre lo studio indica i successi con l’Associazione dei disabili della resistenza in Nicaragua e il Comitato internazionale della Croce Rossa in Afghanistan ed altrove, sostiene che per poter risolvere questo problema complesso è necessario il coinvolgimento delle ONG che hanno il potere di rafforzare le capacità. Un’altra ricerca sostiene che i gruppi comunitari per il risparmio e il prestito hanno il potenziale di aumentare i tassi di occupazione delle persone con disabilità e le organizzazioni per la disabilità possono svolgere un ruolo importante se uniscono le loro forze con i gruppi comunitari finanziari (177).
Tutela sociale La disabilità è collegata fortemente con l’estrema povertà nel mondo e la LM non costituisce un’eccezione. Uno studio australiano ha stimato che il 196
reddito annuo medio di persone con tetraplegia che lavorano è circa la metà del reddito medio annuale della popolazione generale (179). In uno studio malaysiano il reddito guadagnato dopo la lesione, per il 50% dei lavoratori, era notevolmente inferiore a quello percepito prima (105). Si è osservato che nel sud dell’India la maggior parte dei pazienti con LM viveva al di sotto della soglia della povertà (109, 135), e nel Nepal meno della metà della popolazione oggetto di studio non guadagnava nulla per alcuni anni dopo la fine del processo riabilitativo (180). Nello Zimbabwe uno studio ha svelato che un terzo dei sopravvissuti alla LM non aveva alcun reddito e dipendeva dai sostegni monetari dei familiari e degli amici (108). È stato mostrato che nel Ghana le persone con limitazioni motorie sono costrette a chiedere l’elemosina in modo illecito a causa della mancanza di opportunità lavorative o servizi sociali (181). A parte questi studi isolati, non è chiaro come molte PLM riescano ad essere economicamente indipendenti. E’ probabile che molte persone dipendano da programmi di previdenza sociale, pensioni di invalidità, sostegno al reddito, assistenza familiare o donazioni in natura. I programmi di sicurezza sociale sono vulnerabili alle crisi economiche e sono carenti in quasi tutte le aree povere del mondo. In alcuni paesi, compresa l’India, esistono benefici riservati ai lavoratori statali o al personale militare, che aiutano le PLM impiegate in questi settori (182, 183). Molti dei Paesi ad alto reddito, e un numero crescente di Paesi a medio reddito come Brasile, Namibia e Sud Africa, hanno due forme di protezione sociale. Una è temporanea e basata sul reddito al fine di garantire un’entrata economica fino alla ripresa definitiva del lavoro (ad es. assicurazione contro la disoccupazione, sussidi temporanei di invalidità). L’altra è una forma permanente di assistenza sociale o welfare nei casi in cui la disabilità sia talmente grave che la persona non è più in grado lavorare. Nei Paesi Bassi, per esempio, l’assicurazione contro la disoccupazione è obbligatoria. Di conseguenza, il 97% delle PLM
Capitolo 8 Istruzione e lavoro
senza lavoro dopo la lesione ricevono sovvenzioni e la gran parte di quelli senza lavoro continuano ad avere diritto ad un sussidio sociale supplementare basato sul 70% dello stipendio percepito prima della LM (127). In Canada, invece, il piano di assicurazione contro la disabilità a lungo termine (DI) paga dal 65 al 70% dello stipendio per due anni dopo la lesione finché non si trova un lavoro alternativo. Se non è possibile tornare al lavoro, questo sussidio viene garantito per un periodo lungo ed eventualmente sostituito da qualche forma di assistenza sociale (152). L’aspetto negativo dei piani di protezione sociale è che possono trasformarsi in una “trappola dei sussidi”. Poichè il mantenimento del sussidio e degli altri programmi è basato sul reddito (o finisce semplicemente quando si ottiene un lavoro permanente), le PLM che hanno bisogni continui legati alla salute e alla riabilitazione, compresi i costi degli ausili assistivi, sono restii ad accettare un lavoro. Il motivo è che il reddito che percepirebbero, al quale vanno sottratti i costi dell’assistenza sanitaria e altre spese legate alla LM, sarebbe inferiore a quanto gli spetterebbe se rimanessero nel programma di sostituzione temporanea del reddito (184). Ci sono dati contrastanti su quanto sia esteso questo problema. Un ampio studio condotto negli Stati Uniti ha dimostrato che per le PLM senza occupazione i consistenti sussidi per l’invalidità erano fortemente associati alla minore possibilità di lavorare negli anni successivi (129). Non sembra, però, che i beneficiari dell’assicurazione a lungo termine chiedano retribuzioni fuori del mercato del lavoro: la metà vorrebbe uno stipendio pari all’80% o meno dell’ultimo stipendio guadagnato prima di ricevere l’assicurazione per l’invalidità. Si stima che circa il 7% dei beneficiari a lungo termine dell’assicurazione potrebbe tornare al lavoro se cercasse lavoro e se fosse offerto loro uno stipendio medio pari all’80% dell’ultimo stipendio (185). La soluzione più diretta, anche se costosa, alla trappola dei sussidi è quella di modificare il criterio basato sul reddito, affinché una persona
che deve affrontare costi alti per l’assistenza sanitaria e per la disabilità, possa tenere una parte del sussidio dopo aver trovato un’occupazione sicura. La difficoltà evidente legata a questa soluzione è che, in caso di disoccupazione diffusa, la gente cercherebbe di sfruttare il sostegno alla disabilità per coprire i costi dell’assistenza sanitaria. L’OCSE ha suggerito cambiamenti radicali che potrebbero aiutare molto le PLM (102,186), sostenendo che i sussidi della disabilità dovrebbero essere solamente un componente di un “pacchetto di partecipazione” più ampio, adattato ai bisogni e alle capacità individuali, e volto prima di tutto al reinseriemnto lavorativo. Il pacchetto comprenderebbe riabilitazione e formazione professionale, supporto nella ricerca del lavoro, e soldi o benefici in natura per preparare il ritorno a lavoro. Il pacchetto dovrebbe coinvolgere direttamente i datori di lavoro, ai quali si darebbe un incentivo sostanzioso per assumere questi lavoratori e un disincentivo per licenziarli se dovessero emergere in seguito necessità di ulteriori accomodamenti sul posto di lavoro. In questo modo i sussidi per la disabilità sarebbero da considerarsi pagamenti transitori rappresentando un passo verso la piena occupazione. I cambiamenti suggeriti dall’OCSE sulle politiche relative alla disabilità e all’occupazione lavorativa potrebbero costituire un beneficio per le PLM più che per altri gruppi con disabilità. La persona con LM traumatica solitamente è giovane e, prima della lesione, è in una fase di preparazione della carriera o ne ha appena cominciata una. La riabilitazione professionale, come pacchetto transitorio di servizi relativi al lavoro, rientra nella proposta dell’OCSE.
Conclusioni e suggerimenti L’istruzione è un passo essenziale verso l’occupazione e la piena partecipazione alla società, ma per i bambini con spina bifida o i giovani adulti con LM, che rientrano a scuola, la piena partecipazione al percorso educativo può rivelarsi difficile 197
Prospettive Internazionali sulla lesione del midollo spinale
a causa delle barriere sia fisiche che attitudinali. E’ necessario un cambiamento istituzionale e scolastico per eliminare queste barriere e fornire i servizi di accomodamento e supporto affinché ogni bambino o giovane adulto con LM possa beneficiare pienamente dell’istruzione. Anche gli adulti che volessero riqualificarsi per nuovi lavori, hanno bisogno di supporto personalizzato e di accomodamenti da parte degli istituti di formazione, scuole professionali o tecniche, college ed università. Le PLM, se qualificate, possono soddisfare i requisiti di molti lavori ed essere produttive. Tuttavia, spesso ottenere e mantenere un lavoro è reso difficile da: mancanza di accesso alla pertinente istruzione, formazione, riabilitazione professionale e servizi di collocamento; mancanza di accesso a risorse finanziarie per opportunità di lavoro autonomo; disincentivi e ritardi creati dalla struttura di alcuni piani di protezione sociale; mancanza di accomodamenti sul posto di lavoro e di tecnologia assistiva; pregiudizi da parte dei datori di lavoro e dei colleghi su ciò che le PLM sono in grado di fare o meno. Molte persone e gruppi – composti da famiglie, dirigenti scolastici, insegnanti, professionisti della riabilitazione ed altri specialisti presso governi, datori di lavoro ed organizzazioni LM – devono essere coinvolti e coordinati tra loro per superare gli ostacoli alla piena partecipazione all’istruzione e all’occupazione. Le aree critiche che questi responsabili devono affrontare sono sintetizzate nei seguenti suggerimenti.
■ Pianificare il ritorno a scuola dopo la lesione ■ ■ ■ ■ ■
portando a collaborare il personale educativo e riabilitativo. Assicurare la disponibilità di servizi sanitari, riabilitativi e di supporto come richiesti dal bambino. Far sì che gli insegnanti siano preparati a rispondere ai bisogni dei bambini con disabilità. Dove è possibile, fornire il tutoraggio tra pari per il bambino che torna a scuola o che transita fra livelli di istruzione. Far partecipare genitori e bambini nel processo decisionale. Utilizzare le organizzazioni LM per fornire informazioni e percorsi di sensibilizzazione su questioni relative alla LM.
Assicurare l’occupazione e l’autosufficienza economica ■ Promulgare, applicare e divulgare una legislazione efficace contro la discriminazione affinché i datori di lavoro siano consapevoli del loro dovere di non discriminare e di fornire accomodamenti ragionevoli. Garantire l’accesso alla riabilitazione professionale per aiutare le PLM a prepararsi per l’inserimento lavorativo e per indirizzarle su come affrontare le problematiche psicosociali. Promuovere l’accesso alla microfinanza o ad altre fonti di credito per le PLM che desiderano sviluppare un’opportunità di lavoro autonomo. A seconda del contesto, fornire protezione sociale a sostegno delle persone e delle famiglie colpite da LM purché non si traduca in un disincentivo al lavoro. Raccogliere le statistiche sulle esperienze lavorative delle PLM e delle persone con altre disabilità.
■
■
Valorizzare la partecipazione all’istruzione ■ Assicurare che le leggi e le politiche garantiscano che i bambini con LM possano iscriversi e frequentare qualsiasi livello di istruzione appropriata ai loro bisogni e capacità, alle stesse condizioni degli altri. ■ Garantire che le strategie di ammissione ai college e alle università non escludano potenziali candidati con LM e che siano previste strategie per rendere l’ambiente accessibile. 198
■
■
Capitolo 8 Istruzione e lavoro
Referenze 1. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 2. WHO. World report on disability. Geneva, World Health Organization, 2011. 3. UNESCO. Strong foundations: early childhood care and education. Education for All Global Monitoring Report, 2007. Paris, United Nations Educational, Scientific and Cultural Organization, 2006. 4. Kochung JE. Role of higher education in promoting inclusive education: Kenyan perspective. Journal of Emerging Trends in Educational Research and Policy Studies, 2011, 2:144-149. 5. Filmer D. Disability, poverty, and schooling in developing countries: results from 14 household surveys. The World Bank Economic Review, 2008, 22:141-163. doi: http://dx.doi.org/10.1093/wber/lhm021 6. UNESCO. Policy guidelines on inclusion in education. Paris, United Nations Educational, Scientific and Cultural Organization, 2009. 7. Loeb ME, Eide AH, eds. Living conditions among people with activity limitations in Malawi: a national representative study. Oslo, SINTEF, 2004. 8. Eide AH et al. Living conditions among people with disabilities in Zimbabwe: a representative, regional study. Oslo, SINTEF, 2003. 9. Eide AH, van Rooy G, Loeb ME. Living conditions among people with disabilities in Namibia: a national, representative study. Oslo, SINTEF, 2003. 10. Eide AH, Loeb ME, eds. Living conditions among people with activity limitations in Zambia. Oslo, SINTEF, 2006. 11. VanLeit B, Channa S, Rithy B. Children with disabilities in rural Cambodia. An examination of functional status and implications for service delivery. Asia Pacific Disability Rehabilitation Journal, 2007, 18. 12. Rieser R. Implementing inclusive education: A Commonwealth guide to implementing Article 24 of the UN Convention on the Rights of People with Disabilities. London, Commonwealth Secretariat, 2012. 13. Zhang E. The protection of rights of people with disabilities in China. Asia Pacific Disability Rehabilitation Journal, 2007, 18:49-89. 14. Croft A. Including disabled children in learning. Challenges in developing countries. Create Pathways to Access, Research Monograph, No. 26. Brighton, University of Sussex, 2010 (http://www.create-rpc.org/pdf_documents/PTA36.pdf, accessed 20 April 2012). 15. McGinnis K, Lunn M. School re-entry after pediatric spinal cord injury. SCI Nursing, 2004, 21:222-223. PMID:15794424 16. DeVivo MJ, Chen Y. Trends in new injuries, prevalent cases, and aging with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:332-338. doi: http://dx.doi.org/10.1016/j.apmr.2010.08.031 17. Barf HA et al. Educational career and predictors of type of education in young adults with spina bifida. International Journal of Rehabilitation Research, 2004, 27:45-52. doi: http://dx.doi.org/10.1097/00004356-200403000-00006 18. DeVivo MJ. Epidemiology of traumatic spinal cord injury: trends and future implications. Spinal Cord, 2012, 50:365-372. doi: http://dx.doi.org/10.1038/sc.2011.178 19. Hagen EM et al. Traumatic spinal cord injury and concomitant traumatic brain injury: a cohort study. Acta Neurologica Scandinavica, Supplementum, 2010, 190:51-57. doi: http://dx.doi.org/10.1111/j.1600-0404.2010.01376.x 20. Burmeister R et al. Attention problems and executive functions in children with spina bifida and hydrocephalus. Child Neuropsychology, 2005, 11:265-283. doi: http://dx.doi.org/10.1080/092970490911324 21. Fletcher JM et al. Spinal lesion level in spina bifida: a source of neural and cognitive heterogeneity. Journal of Neurosurgery Pediatrics 3, 2005, 102:268–279. 22. Wasson CM, Bannister CM, Ward GS. Factors affecting the school placement of children with spina bifida. European Journal of Pediatric Surgery, 1992, 2 Suppl. 1:29-34. doi: http://dx.doi.org/10.1055/s-2008-1063496 23. Bellin MH et al. Correlates of depressive and anxiety symptoms in young adults with spina bifida. Journal of Pediatric Psychology, 2010, 35:778-789. Epub: 30 October 2009 doi: http://dx.doi.org/10.1093/jpepsy/jsp094 24. Bowman RM et al. Spina bifida outcome: a 25-year prospective. Pediatric Neurosurgery, 2001, 34:114-120. doi: http://dx.doi. org/10.1159/000056005 25. Sawin KJ, Betz CL, Linroth R. Gaps and opportunities: an agenda for further research, services, and program development in spina bifida. Pediatric Clinics of North America, 2010, 57:1041-1057. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.020 26. Graham P, Weingarden S, Murphy P. School reintegration: a rehabilitation goal for spinal cord injured adolescents. Rehabilitation Nursing, 1991, 16:122-127. doi: http://dx.doi.org/10.1002/j.2048-7940.1991.tb01196.x 27. Mulcahey MJ. Returning to school after a spinal cord injury: perspectives from four adolescents. The American Journal of Occupational Therapy, 1992, 46:305-312. doi: http://dx.doi.org/10.5014/ajot.46.4.305
199
Prospettive Internazionali sulla lesione del midollo spinale
28. Castle R. An investigation into the employment and occupation of patients with a spinal cord injury. Paraplegia, 1994, 32:182-187. doi: http://dx.doi.org/10.1038/sc.1994.33 29. Dudgeon BJ, Massagli TL, Ross BW. Educational participation of children with spinal cord injury. The American Journal of Occupational Therapy, 1997, 51:553-561. doi: http://dx.doi.org/10.5014/ajot.51.7.553 30. Knight A et al. The school lives of children and young people with a spinal cord injury. Report to the Back-Up Team. London, Thomas Coram Research Unit, University of London, 2008. 31. Newman L, Malouf D. The post-high school outcomes of youth with disabilities up to 4 years after high school. Menlo Park, CA, SRI International, 2009. 32. Massagli TL, Dudgeon BJ, Ross BW. Educational performance and vocational participation after spinal cord injury in childhood. Archives of Physical Medicine and Rehabilitation, 1996, 77:995-999. doi: http://dx.doi.org/10.1016/S0003-9993(96)90058-1 33. OECD. Inclusion of students with disabilities in tertiary education and employment, education and training policy. Paris, Organisation for Economic Co-operation and Development, 2011. 34. Momin AKM. Impact of services for people with spinal cord lesion on economic participation. Asia Pacific Disability Rehabilitation Journal, 2004, 15:53-67. 35. OECD. Students with disabilities, learning difficulties and disadvantages: policies, statistics and indicators. Paris, Organisation for Economic Co-operation and Development, 2007. 36. Bines H, Lei P, editors. Education’s missing millions: including disabled children in education through EFA FTI processes and national sector plans. Milton Keynes, World Vision UK, 2007 (http://www.worldvision.org.uk/upload/pdf/Education%27s_Missing_ Millions_-_Main_Report.pdf, accessed 16 May 2012). 37. UNESCO. Guidelines for inclusion: Ensuring access to Education for All. Paris, United Nations Educational, Scientific and Cultural Organization, 2005. 38. Dube AK. The role and effectiveness of disability legislation in South Africa. London, Disability Knowledge and Research Programme, 2005 (http://www.dfid.gov.uk/r4d/PDF/Outputs/Disability/PolicyProject_legislation_sa.pdf, accessed 20 April 2012). 39. Engelbrecht P, Oswald M, Forlin C. Promoting the implementation of inclusive education in primary schools in South Africa. British Journal of Special Education, 2006, 33:121-129. doi: http://dx.doi.org/10.1111/j.1467-8578.2006.00427.x 40. Liptak GS et al. Youth with spina bifida and transitions. Health and social participation in a nationally represented sample. The Journal of Pediatrics, 2010, 157:584–588.e1. 41. Holmbeck GN et al. Family perspective: how this product can inform and empower families of youth with spina bifida. Pediatric Clinics of North America, 2010, 57:919-934. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.012 42. O’Mahar K et al. A camp-based intervention targeting independence among individuals with spina bifida. Journal of Pediatric Psychology, 2010, 35:848-856. doi: http://dx.doi.org/10.1093/jpepsy/jsp125 43. van Mechelen MC et al. Work participation among young adults with spina bifida in the Netherlands. Developmental Medicine and Child Neurology, 2008, 50:772-777. doi: http://dx.doi.org/10.1111/j.1469-8749.2008.03020.x 44. Zukerman JM. Adolescent predictors of emerging adulthood milestones in youth with spina bifida. Journal of Pediatric Psychology, 2011, 36:265-276. doi: http://dx.doi.org/10.1093/jpepsy/jsq075 PMID:20855288 45. Miles M. Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society, 2002, 17:643-658. doi: http://dx.doi.org/10.1080/0968759022000010425 46. Webster G, Kennedy P. Addressing children’s needs and evaluating rehabilitation outcome after spinal cord injury: the child needs assessment checklist and goal-planning program. The Journal of Spinal Cord Medicine, 2007, 30 Suppl. 1:S140-S145. PMID:17874699 47. Anderson CJ et al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine, 2004, 27 Suppl. 1:S98-S106. PMID:15503711 48. Anderson CJ, Vogel LC. Employment outcomes of adults who sustained spinal cord injuries as children or adolescents. Archives of Physical Medicine and Rehabilitation, 2002, 83:791-801. doi: http://dx.doi.org/10.1053/apmr.2002.32742 49. Vogel LC et al. Unique issues in pediatric spinal cord injury. Orthopedic Nursing, 2004, 23:300-308. doi: http://dx.doi. org/10.1097/00006416-200409000-00004 50. Jerlinder K, Danermark B, Gill P. Swedish primary-school teachers’ attitudes to inclusion – the case of PE and pupils with physical disabilities. European Journal of Special Needs Education, 2010, 25:45-57. doi: http://dx.doi.org/10.1080/08856250903450830 51. Asbjørnslett M, Hemmingsson H. Participation at school as experienced by teenagers with physical disabilities. Scandinavian Journal of Occupational Therapy, 2008, 15:153-161. doi: http://dx.doi.org/10.1080/11038120802022045 52. House LA et al. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives. Spinal Cord, 2009, 47:882-886. doi: http://dx.doi.org/10.1038/sc.2009.64
200
Capitolo 8 Istruzione e lavoro
53. Roessler RT, Hennessey ML, Rumrill PD. Strategies for improving career services for postsecondary students with disabilities: results of a focus group study of key stakeholders. Career Development for Exceptional Individuals, 2007, 30:158-170. doi: http:// dx.doi.org/10.1177/08857288070300030501 54. Shem K et al. Return to work and school: a model mentoring program for youth and young adults with spinal cord injury. Spinal Cord, 2011, 49:544-548. doi: http://dx.doi.org/10.1038/sc.2010.166 55. Houchins DE. Post-secondary transitions assistive technology barriers and facilitators during secondary and post-secondary transitions. Career Development for Exceptional Individuals, 2001, 24:73-88. doi: http://dx.doi.org/10.1177/088572880102400106 56. National Center on Secondary Education and Transition (NCSET). Current challenges facing the future of secondary education and transition services for youth with disabilities in the United States. US Department of Education, Office of Special Education Program, Washington, DC, 2004. 57. Scarborough, J., Gilbride, D. Developing relationships with rehabilitation counselors to meet the transition needs of students with disabilities. Professional School Counseling. 2006 10: 25–33. 58. Dutta A, Schiro-Geist C, Kundu M. Coordination of postsecondary transition services for students with disabilities. Journal of Rehabilitation, 2009, 75:10-17. 59. Taylor M, Baskett M, Wren C. Managing the transition to university for disabled students. Education + Training, 2010, 52:165-175. 60. Lewin KM. Improving access, equity and transitions in education: creating a research agenda. Create Pathways to Access, Research Monograph, No. 1. Brighton, University of Sussex, 2007. 61. Vosloo S-M. The functioning of primary school learners with paraplegia/paraparesis in mainstream schools in the Western Cape, South Africa. An exploratory study. Disability and Rehabilitation, 2009, 31:23-31. doi: http://dx.doi. org/10.1080/09638280802280643 62. Ong LC, Lim YN, Sofiah A. Malaysian children with spina bifida: relationship between functional outcome and level of lesion. Singapore Medical Journal, 2002, 43:012−017. 63. Masangwa. Disabled children can and should go to school. The Africa Report, 2010 (http://theafricareport.com/Blog/index. php?trackback/12, accessed 15.5.2012). 64. Losinsky LO et al. An investigation into the physical accessibility to wheelchair bound students of an Institution of Higher Education in South Africa. Disability and Rehabilitation, 2003, 25:305-308. doi: http://dx.doi.org/10.1080/0963828021000043743 PMID:12745953 65. Abend AC. Planning and designing for students with disabilities. National Clearinghouse for Educational Facilities, 2001 (http:// www.ncef.org/pubs/accessibility.pdf, accessed 14 November 2012). 66. Pivik J, McComas J, Laflamme M. Barriers and facilitators to inclusive education. Exceptional Children, 2002, 69:97-107. 67. Monk J, Wee J. Factors shaping attitudes toward physical disability and availability of rehabilitation support services for disabled persons in rural Kenya. Asia Pacific Disability Rehabilitation Journal, 2008, 19:93-113. 68. OECD. Accessibility Programme and School Restoration in Lisbon. PEB Exchange Paris: Organisation for Economic Co-operation and Development, 2006. 69. Cook A et al. School-based use of a robotic arm system by children with disabilities. IEEE Transactions on Neural Systems and Rehabilitation Engineering, 2005, 13:452-460. PMID:16425826 doi: http://dx.doi.org/10.1109/TNSRE.2005.856075 PMID:16425826 70. Pilot SCI. Making equipment decisions after spinal cord injury. A peer support discussion guide. Toronto, Toronto Rehabilitation Institute, 2003 (http://www.scipilot.com/_g/expe_g/PeerGuide.pdf, accessed 20 April 2012). 71. Hasselbring TS, Glaser CHW. Use of computer technology to help students with special needs. The Future of Children: Children and Computer Technology, 2000, 10:102-122. doi: http://dx.doi.org/10.2307/1602691 PMID:11255702 72. Kemp CE, Hourcade JJ, Parette HP. Building and initial information base. Assistive technology funding resources for school-aged students with disabilities. Journal of Special Education Technology, 2000, 15:4. 73. Government of United Kingdom. Disabled students’ allowances. London, United Kingdom (http://www.gov.uk/disabled-studentsallowances-dsas, accessed 11 April 2013). 74. Disability Alliance. Disability Alliance Northern Ireland. London, United Kingdom. (http://www.nidirect.gov.uk/disability-alliance, accessed 11 April 2013). 75. Peters S. Inclusive education. An EFA strategy for all children. World Bank. Human Development Network. 2004 (http:// siteresources.worldbank.org/EDUCATION/Resources/278200-1099079877269/547664-1099079993288/InclusiveEdu_efa_ strategy_for_children.pdf, accessed 11 July 2012). 76. Meijer C. Financing of special needs education. A seventeen country study of the relation between financing of special needs education and integration Middelfart: Denmark: European Agency for Development in Special Needs Education, 1999. 77. Krause JS, Carter RE. Risk of mortality after spinal cord injury: relationship with social support, education, and income. Spinal Cord, 2009, 47:592-596. doi: http://dx.doi.org/10.1038/sc.2009.15
201
Prospettive Internazionali sulla lesione del midollo spinale
78. Whalley Hammel K. Experience of rehabilitation following spinal cord injury: a meta-synthesis of qualitative findings. Spinal Cord, 2007, 45:260-274. PMID:17310257 79. Back Up. Back Up Trust (http://www.backuptrust.org.uk/what-we-do/mentoring, accessed 5 May 2013). 80. Anderson CJ et al. Anxiety and depression in children and adolescents with spinal cord injuries. Developmental Medicine and Child Neurology, 2009, 51:826-832. doi: http://dx.doi.org/10.1111/j.1469-8749.2009.03268.x 81. Krause JS, Broderick LA. 25-year longitudinal study of the natural course of aging after spinal cord injury. Spinal Cord, 2005, 43:349-356. doi: http://dx.doi.org/10.1038/sj.sc.3101726 82. Nel N et al. A comparative perspective on teacher attitude-constructs that impact on inclusive education in South Africa and Sweden. South African Journal of Education, 2011, 31:74-90. 83. Huang HH, Diamond KE. Early childhood teachers’ ideas about including children with disabilities in programmes designed for typically developing children. International Journal of Disability Development and Education, 2009, 56:169-182. doi: http://dx.doi. org/10.1080/10349120902868632 84. Mulvihill BA, Cotton JN, Gyaben SL. Best practices for inclusive child and adolescent out-of-school care. A review of the literature. Family & Community Health, 2004, 27:52-64. 85. Mukhopadhay S, Molosiwa SM. Influence of an introductory special education course on attitude change of PGDE students of University of Botswana. Asia Pacific Disability Rehabilitation Journal, 2010, 21. 86. Wehbi S. The challenges of inclusive education in Lebanon. Disability & Society, 2006, 21:331-343. doi: http://dx.doi. org/10.1080/09687590600679980 87. UNESCO. Toolkit for creating inclusive learning-friendly environments. Paris, United Nations Educational, Scientific and Cultural Organization, 2009. 88. OECD. OECD toolkit on teaching for diversity.Paris, OECD, Centre for Educational Research and Innovation (www.oecd.org/edu/ ted/toolkit, accessed 18 May 2012). 89. Sharma, U, Forlin, C, Loreman, T. Impact of training on pre-service teachers’ attitudes and concerns about inclusive education and sentiments about persons with disabilities. Disability & Society, 2010, 23:772–785. 90. Diaz-Greenberg R et al. What teachers need to know about the struggle for self-determination (conscientization) and selfregulation: adults with disabilities speak about their education experiences. Teaching and Teacher Education, 2000, 16:873-887. doi: http://dx.doi.org/10.1016/S0742-051X(00)00032-9 91. Buckup S. The price of exclusion. The economic consequences of excluding people with disabilities from the world of work. Employment Working Paper, No. 43. Geneva, International Labour Organization, 2009. 92. Krause JS et al. Employment after spinal cord injury: differences related to geographic region, gender and race. Archives of Physical Medicine and Rehabilitation, 1998, 79:615-624. doi: http://dx.doi.org/10.1016/ S0003-9993(98)90033-8 93. Krause JS. Adjustment to life after spinal cord injury: a comparison among three participant groups based on employment status. Rehabilitation Counseling Bulletin, 1992, 35:218-229. 94. Crisp R. Vocational decision making by sixty spinal cord injury patients. Paraplegia, 1992, 30:420-424. doi: http://dx.doi. org/10.1038/sc.1992.92 95. Chapin M, Kewman D. Factors affecting employment following spinal cord injury: a qualitative study. Rehabilitation Psychology, 2001, 46:400-416. doi: http://dx.doi.org/10.1037/0090-5550.46.4.400 96. Ottomanelli L, Lind L. A review of critical factors related to employment following spinal cord injury: implications for research and vocational services. The Journal of Spinal Cord Medicine, 2009, 32:503-531. PMID:20025147 97. Krause JS, Saunders L, DeVivo MJ. Income and risk of mortality after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:339-345. doi: http://dx.doi.org/10.1016/j.apmr.2010.09.032 98. Hess DW et al. Predictors for return to work after spinal cord injury: a 3-year multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2000, 81:359-363. doi: http://dx.doi.org/10.1016/S0003-9993(00)90084-4 99. Krause JS, Anson C. Adjustment after spinal cord injury: relationship to participation in employment of educational activities. Rehabilitation Counseling Bulletin, 1997, 40:202-214. 100. Meade MA et al. The influence of secondary conditions on job acquisition and retention in adults with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:425-432. doi: http://dx.doi.org/10.1016/j.apmr.2010.10.041 101. Young AE, Murphy GC. Employment status after spinal cord injury (1992–2005): A review with implications for interpretation, evaluation, further research, and clinical practice. International Journal of Rehabilitation Research, 2009, 32:1-11. doi: http://dx.doi. org/10.1097/MRR.0b013e32831c8b19 102. OECD. Transforming disability into ability. Policies to promote work and income security for disabled people. Paris, Organisation for Economic Co-operation and Development, 2003.
202
Capitolo 8 Istruzione e lavoro
103. Lidal IB, Huynh TK, Biering-Sorensen F. Return to work following spinal cord injury: A review. Disability and Rehabilitation, 2007, 29:1341-1375. doi: http://dx.doi.org/10.1080/09638280701320839 PMID:17729082 104. Lidal IB et al. Employment of persons with spinal cord lesions injured more than 20 years ago. Disability and Rehabilitation, 2009, 31:2174-2184. doi: http://dx.doi.org/10.3109/09638280902946952 105. Ramakrishnan K et al. Return to work after spinal cord injury in Malaysia. Spinal Cord, 2011, 49:812-816. doi: http://dx.doi. org/10.1038/sc.2010.186 106. Hansen CH, Mahmud I, Bhuiyan AJ. Vocational reintegration of people with spinal cord lesion in Bangladesh – an observational study based on a vocational training project at CRP. Asia Pacific Disability Rehabilitation Journal, 2007, 18:63-75. 107. Gupta N, Solomon J, Raja K. Employment after paraplegia in India: a postal survey. Spinal Cord, 2011, 49:806-811. doi: http:// dx.doi.org/10.1038/sc.2011.1 108. Levy LF et al. Problems, struggles and some success with spinal cord injury in Zimbabwe. Spinal Cord, 1998, 36:213-218. doi: http://dx.doi.org/10.1038/sj.sc.3100574 109. Samuelkamaleshkumar S et al. Community reintegration in rehabilitated South Indian persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2010, 91:1117-1121. doi: http://dx.doi.org/10.1016/j.apmr.2010.04.005 110. Gerhardt CA et al. Educational and occupational outcomes among survivors of childhood cancer during the transition to emerging adulthood. Journal of Developmental and Behavioral Pediatrics, 2007, 28:448-455. doi: http://dx.doi.org/10.1097/ DBP.0b013e31811ff8e1 111. Frieden L, Winnegar AJ. Opportunities for research to improve employment for people with spinal cord injuries. Spinal Cord, 2012, 50:379-381. doi: http://dx.doi.org/10.1038/sc.2012.38 112. Yasuda S et al. Return to work after spinal cord injury: a review of recent research. NeuroRehabilitation, 2002, 17:177-186. PMID:12237497 113. Al-Khodairy AT, El Masry WS. Vocational rehabilitation and spinal cord injuries. In: Gobelet C, Franchignoni F, eds. Vocational rehabilitation. Collection de L’Académie Européenne de Médecine de Réadaptation. Paris, Springer-Verlag France, 2006, 165−184. doi: http://dx.doi.org/10.1007/2-287-29745-6_11 114. Anderson D et al. Determinants of return to work among spinal cord injury patients: a literature review. Journal of Vocational Rehabilitation, 2007, 27:57-68. 115. Noreau L et al. Work and employment. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010 (http://www.scireproject.com/sites/default/files/work_and_ employment.pdf, accessed 12 May 2012). 116. Krause JS et al. Employment after spinal cord injury: an analysis of cases from the Model Spinal Cord Injury Systems. Archives of Physical Medicine and Rehabilitation, 1999, 80:1492-1500. doi: http://dx.doi.org/10.1016/S0003-9993(99)90263-0 117. Valtonen K et al. Work participation among persons with traumatic spinal cord injury and meningomyelocele. Journal of Rehabilitation Medicine, 2006, 38:192-200. doi: http://dx.doi.org/10.1080/16501970500522739 118. Marini I et al. Vocational rehabilitation service patterns related to successful competitive employment outcomes of persons with spinal cord injury. Journal of Vocational Rehabilitation, 2008, 28:1-13. 119. Krause JS et al. Prediction of postinjury employment and percentage of time worked after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2012, 93:373-375. doi: http://dx.doi.org/10.1016/j.apmr.2011.09.006 120. Phillips VL, Hunsaker AE, Florence CS. Return to work and productive activities following a spinal cord injury: the role of income and insurance. Spinal Cord, 2012, 50:623–626 (E-pub ahead of print). doi: http://dx.doi.org/10.1038/sc.2012.22 121. Krause JS, Terza JV, Dismuke C. Earnings among people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:1474-1481. doi: http://dx.doi.org/10.1016/j.apmr.2007.12.040 122. Meade MA et al. Vocational rehabilitation services for individuals with spinal cord injury. Journal of Vocational Rehabilitation, 2006, 25:3-11. 123. Arango-Lasprilla JC et al. Race, ethnicity, and employment outcomes 1, 5, and 10 years after spinal cord injury: a longitudinal analysis. Journal of Physical Medicine & Rehabilitation: the journal of injury, function, and rehabilitation, 2010, 2:901–910. 124. Wehman P et al. Employment satisfaction of individuals with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2000, 79:161-169. doi: http://dx.doi.org/10.1097/00002060-200003000-00009 125. Krause JS. Aging and self-reported barriers to employment after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2001, 6:102-115. doi: http://dx.doi.org/10.1310/1WMH-35Q6-12B5-3WMN 126. Benavente A et al. Assessment of disability in spinal cord injury. Disability and Rehabilitation, 2003, 25:1065-1070. doi: http:// dx.doi.org/10.1080/0963828031000137775
203
Prospettive Internazionali sulla lesione del midollo spinale
127. Tomassen PC, Post MW, van Asbeck FW. Return to work after spinal cord injury. Spinal Cord, 2000, 38:51-55. doi: http://dx.doi. org/10.1038/sj.sc.3100948 128. Krause JS. Years to employment after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2003, 84:1282-1289. doi: http://dx.doi.org/10.1016/S0003-9993(03)00265-X 129. Pflaum C et al. Worklife after traumatic spinal cord injury. The Journal of Spinal Cord Medicine, 2006, 29:377-386. PMID:17044388 130. Krause JS, Coker JL. Aging after spinal cord injury: a 30-year longitudinal study. The Journal of Spinal Cord Medicine, 2006, 29:371376. PMID:17044387 131. Kurtaran A et al. Occupation in spinal cord injury patients in Turkey. Spinal Cord, 2009, 47:709-712. doi: http://dx.doi.org/10.1038/ sc.2009.79 132. Murphy GC et al. Predicting employment status at 2 years postdischarge from spinal cord injury rehabilitation. Rehabilitation Psychology, 2011, 56:251-256. doi: http://dx.doi.org/10.1037/a0024524 133. Cifu DX, Wehman P, McKinley WO. Determining impairment following spinal cord injury. Physical Medicine and Rehabilitation Clinics of North America, 2001, 12:603-612. PMID:11478191 134. Kennedy P et al. A multi-centre study of the community needs of people with spinal cord injuries: the first 18 months. Spinal Cord, 2010, 48:15-20. doi: http://dx.doi.org/10.1038/sc.2009.65 135. Sekaran P et al. Community reintegration of spinal cord-injured patients in rural south India. Spinal Cord, 2010, 48:628-632. doi: http://dx.doi.org/10.1038/sc.2010.6 136. Jang Y, Wang YH, Wang JD. Return to work after spinal cord injury in Taiwan: the contribution of functional independence. Archives of Physical Medicine and Rehabilitation, 2005, 86:681-686. doi: http://dx.doi.org/10.1016/j.apmr.2004.10.025 137. Escorpizo R et al. A conceptual definition of vocational rehabilitation based on the ICF: building a shared global model. Journal of Occupational Rehabilitation, 2011, 21:126-133. doi: http://dx.doi.org/10.1007/s10926-011-9292-6 138. Gard G, Soderberg S. How can a work rehabilitation process be improved? A qualitative study from the perspective of social insurance officers. Disability and Rehabilitation, 2004, 26:299-305. doi: http://dx.doi.org/10.1080/09638280310001647624 139. DeSouza M et al. The Papworth early rehabilitation programme: vocational outcomes. Disability and Rehabilitation, 2007, 29:671677. doi: http://dx.doi.org/10.1080/09638280600926538 140. Conroy L, McKenna K. Vocational outcome following spinal cord injury. Spinal Cord, 1999, 37:624-633. doi: http://dx.doi. org/10.1038/sj.sc.3100904 141. Schönherr MC et al. Vocational perspectives after spinal cord injury. Clinical Rehabilitation, 2005, 19:200-208. doi: http://dx.doi. org/10.1191/0269215505cr845oa PMID:15759536 142. Marnetoft SU et al. Factors associated with successful vocational rehabilitation in a Swedish rural area. Journal of Rehabilitation Medicine, 2001, 33:71-78. doi: http://dx.doi.org/10.1080/165019701750098902 143. Targett P, Wehman P, Young C. Return to work for persons with spinal cord injury: designing work supports. NeuroRehabilitation, 2004, 19:131-139. PMID:15201472 144. Yeager P et al. Assistive technology and employment: experiences of Californians with disabilities. Work (Reading, Mass.), 2006, 27:333-344. PMID:17148870 145. Burns SM et al. Psychosocial predictors of employment status among men living with spinal cord injury. Rehabilitation Psychology, 2010, 55:81-90. doi: http://dx.doi.org/10.1037/a0018583 146. Krause JS, Broderick LA. Relationship of personality and locus of control with employment outcomes among participants with spinal cord injury. Rehabilitation Counseling Bulletin, 2006, 49:111-114. doi: http://dx.doi.org/10.1177/00343552060490020201 147. Chan SKK, Man DWK. Barriers to returning to work for people with spinal cord injuries: a focus group study. Work (Reading, Mass.), 2005, 25:325-332. PMID:16340109 148. Lin M-R et al. A prospective study of factors influencing return to work after traumatic spinal cord injury in Taiwan. Archives of Physical Medicine and Rehabilitation, 2009, 90:1716-1722. doi: http://dx.doi.org/10.1016/j.apmr.2009.04.006 PMID:19801061 149. Pearcey TE, Yoshida KK, Renwick RM. Personal relationships after a spinal cord injury. International Journal of Rehabilitation Research, 2007, 30:209-219. doi: http://dx.doi.org/10.1097/MRR.0b013e32829fa3c1 150. Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord, 2010, 48:73-79. doi: http://dx.doi.org/10.1038/sc.2009.92 151. Targett P et al. Functional vocational assessment for individuals with spinal cord injury. Journal of Vocational Rehabilitation, 2005, 22:149-161. 152. Jongbloed L et al. Employment after spinal cord injury: the impact of government policies in Canada. Work (Reading, Mass.), 2007, 29:145-154. PMID:17726290 153. Wehmeyer ML et al. The self-determined career development model: a pilot study. Journal of Vocational Rehabilitation, 2003, 19:79-87.
204
Capitolo 8 Istruzione e lavoro
154. New Zealand Spinal Trust. Kaleidoscope (http://www.nzspinaltrust.org.nz/rehab.asp, accessed 11 April 2013). 155. Inge K et al. Supported employment and assistive technology for persons with spinal cord injury: three illustrations of successful work supports. Journal of Vocational Rehabilitation, 1998, 10:141-152. doi: http://dx.doi.org/10.1016/ S1052-2263(98)00010-5 156. CRP-Bangladesh. Centre for the rehabilitation of the paralysed. (http://www.crp-bangladesh. org/index.php?option=com_ content&view=article&id=69&Itemid=60, accessed 11 April 2013). 157. Hagner D, Cooney B. Building employer capacity to support employees with severe disabilities in the workplace. Work (Reading, Mass.), 2003, 21:77-82. PMID:12897393 158. Gilbride D et al. Identification of the characteristic of work environments and employers open to hiring and accommodating people with disabilities. Rehabilitation Counseling Bulletin, 2003, 46:130-137. doi: http://dx.doi.org/10.117 7/00343552030460030101 159. Boyland A, Burchardt T. Barriers to self-employment for disabled people. Report prepared for the Small Business Service. London, 2002 (http://www.bis.gov.uk/files/file38357.pdf, accessed 16 May 2012). 160. Barf HA et al. Restrictions in social participation in young adults with spina bifida. Disability and Rehabilitation, 2009, 31:921-927. doi: http://dx.doi.org/10.1080/09638280802358282 161. Ravaud JF, Madiot B, Ville I. Discrimination towards disabled people seeking employment. Social Science & Medicine, 1992, 35:951958. doi: http://dx.doi.org/10.1016/0277-9536(92)90234-H 162. McMahon BT et al. Workplace discrimination and spinal cord injury: the national EEOC ADA research project. Journal of Vocational Rehabilitation, 2005, 23:155-162. 163. Hernandez B, Keys L, Balcazar F. Employer attitudes toward workers with disabilities and their ADA employment rights: a literature review. Journal of Rehabilitation, 2000, 66:4-16. 164. Gilbride D et al. Employers’ attitudes toward hiring persons with disabilities and vocational rehabilitation services. Journal of Rehabiltation, 2000, 66:17–23. 165. McNeal DR, Somerville NJ, Wilson DJ. Work problems and accommodations reported by persons who are postpolio or have a spinal cord injury. Assistive Technology, 1999, 11:137-157. doi: http://dx.doi.org/10.1080/10400435.1999.10131998 166. Sabata D et al. A retrospective analysis of recommendations for workplace accommodations for persons with mobility and sensory limitations. Assistive Technology, 2008, 20:28-35. doi: http://dx.doi.org/10.1080/10400435.2008.10131929 167. JAN. Workplace accommodations: low cost, high impact. Morgantown, WV, Job Accommodation Network, updated 2011, (http:// AskJAN.org/media/LowCostHighImpact.doc, accessed 16 May 2012). 168. Somerville N, Wilson DJ, Bruyere SM. Employing and accommodating individuals with spinal cord injuries. Ithaca, NY, Cornel University, 2000 (http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1013&context=edicollect, accessed 16 May 2012). 169. McKinley W et al. Assistive technology and computer adaptations for individuals with spinal cord injury. NeuroRehabilitation, 2004, 19:141-146. PMID:15201473 170. Bricout JC. Using telework to enhance return to work outcomes for individuals with spinal cord injuries. NeuroRehabilitation, 2004, 19:147-159. PMID:15201474 171. Hedrick B et al. Employment issues and assistive technology use for persons with spinal cord injury. Journal of Rehabilitation Research and Development, 2006, 43:185-198. doi: http://dx.doi.org/10.1682/JRRD.2005.03.0062 172. Priebe MM et al. Spinal cord injury medicine. 6: Economic and societal issues in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl. 1:S84-S88. doi: http://dx.doi.org/10.1016/j.apmr.2006.12.005 173. Driscoll MP, Rodger SA, deJonge DM. Factors that prevent or assist the integration of assistive technology into the workplace for people with spinal cord injuries: perspectives of the users and their employers and co-workers. Journal of Vocational Rehabilitation, 2001, 16:53-66. 174. Allen K, Blascovich J. The value of service dogs for people with severe ambulatory disabilities. A randomized controlled trial. Journal of the American Medical Association, 1996, 275:1001-1006. doi: http://dx.doi.org/10.1001/jama.1996.03530370039028 175. Malacrida C. Income support policy in Canada and the UK: different, but much the same. Disability & Society, 2010, 25:673-686. doi: http://dx.doi.org/10.1080/09687599.2010.505739 176. Cramm JM, Finkenflügel H. Exclusion of disabled people from microcredit in Africa and Asia: a literature review. Asian Pacific Disability Rehabilitation Journal, 2008, 19:15-33. 177. de Klerk T. Funding for self-employment of people with disabilities. Grants, loans, revolving funds or linkage with microfinance programmes. Leprosy Review, 2008, 79:92-109. PMID:18540240
205
Prospettive Internazionali sulla lesione del midollo spinale
178. Handicap International. Good practices for the economic inclusion of people with disabilities in developing countries. Funding mechanisms for self-employment. Handicap International, 2006 (http://www.handicap-international.org.uk/Resources, accessed 11 April 2013). 179. Rowell D, Connelly LB. Personal assistance, income and employment: the spinal injuries survey instrument (SISI) and its application in a sample of people with quadriplegia. Spinal Cord, 2008, 46:417-424. doi: http://dx.doi.org/10.1038/ sj.sc.3102157 180. Scovil CY et al. Follow-up study of spinal cord injured patients after discharge from inpatient rehabilitation in Nepal in 2007. Spinal Cord, 2012, 50:232-237. doi: http://dx.doi.org/10.1038/sc.2011.119 181. Kassah AK. Begging as work: a study of people with mobility difficulties in Accra, Ghana. Disability & Society, 2008, 23:163-170. doi: http://dx.doi.org/10.1080/09687590701841208 182. Marriott A, Gooding K. Social assistance and disability in developing countries. Haywards Heath, Sightsavers International, 2007. 183. Singh R, Dhankar SS, Rohilla R. Quality of life of people with spinal cord injury in Northern India. International Journal of Rehabilitation Research, 2008, 31:247-251. doi: http://dx.doi.org/10.1097/MRR.0b013e3282fb7d25 184. Atwell S, Hudson LM. Social security legislation creates Ticket to Work and Work Incentives Improvement Act. Topics in Spinal Cord Injury Rehabilitation, 2004, 9:26-32. doi: http://dx.doi.org/10.1310/LU8A-C1PL-URT1-K0N2 185. Mitra S. Disability and social safety nets in developing countries. International Journal of Disability Studies, 2006, 2:43-88. 186. OECD. Sickness, disability and work: breaking the barriers. A synthesis of findings across OECD countries. Paris, Organisation for Economic Co-operation and Development, 2010.
206
Capitolo 9 La strada da percorrere: raccomandazioni
9
La strada da percorrere: raccomandazioni La lesione midollare (LM, sigla internazionale SCI), è una condizione medica complessa che cambia radicalmente la vita. Ha conseguenze costose sia per gli individui che per la società. Le persone colpite diventano dipendenti, sono escluse dalla scuola, hanno minori probabilità di trovare lavoro e, quel che è peggio, rischiano di morire prematuramente. La LM costituisce una sfida sia per la sanità pubblica che per i diritti umani. Tuttavia, rispondendo con politiche adeguate, come è stato dimostrato in questo rapporto, in ogni parte del mondo dovrebbe essere possibile vivere, prosperare e dare il proprio contributo alla società anche in presenza di una LM. Le persone con lesione midollare (PLM) sono persone con disabilità a cui spettano gli stessi diritti umani e lo stesso rispetto dovuto a tutte le altre persone con disabilità. Una volta data risposta ai loro bisogni sanitari immediati, le barriere sociali ed ambientali rappresentano gli ostacoli principali alla piena funzionalità e all’inclusione sociale delle PLM. Assicurare che i servizi sanitari, l’istruzione, i trasporti e il lavoro siano disponibili ed accessibili alle PLM e ad altre persone con disabilità, può fare la differenza tra il successo e l’insuccesso. La LM costituirà sempre un evento che cambia la vita, ma non deve essere necessariamente una tragedia o un peso insostenibile.
Risultati principali 1. La lesione midollare è un problema rilevante per la sanità pubblica ■ L’incidenza globale di LM, sia traumatica che non-traumatica, è probabilmente tra 40 e 80 casi per milione di abitanti. In base alle stime della popolazione mondiale nel 2012, ciò significa che ogni anno tra 250.000 e 500.000 persone subiscono una lesione midollare (1). L’incidenza della LM traumatica (TLM) riferita negli studi a livello nazionale, vanno da 13 a 53 per milione. Storicamente, fino al 90% delle LM, sono state di origine traumatica, ma i dati degli studi più recenti indicano una lieve tendenza verso l’aumento della percentuale di LM non traumatica (NTLM). Gli studi disponibili rilevano un’incidenza di NTLM di 26 per milione. 209
Prospettive Internazionali sulla lesione del midollo spinale
■ Non sono disponibili stime globali sulla pre-
valenza di LM. I dati sull’incidenza e sulla prevalenza delle LM sono inadeguati e incongruenti. Anche nei paesi sviluppati le cifre variano a causa delle differenze nella diagnosi e nella metodologia di raccolta dati, insieme anche alle vere differenze nell’epidemiologia. Per i paesi dove i dati sono disponibili, le cifre per la prevalenza di TLM vanno da 280 per milione di abitanti in Finlandia (2), a 681 per milione in Australia (39), a 1298 per milione in Canada (4). La prevalenza delle NTLM per adulti e bambini in Australia è di 367 per milione (5) e in Canada di 1227 per milione (4). La prevalenza complessiva delle TLM e NTLM per il Canada nel 2010 era di 2525 per milione di abitanti. ■ Aumento della prevalenza di LM in alcuni paesi. Esiste una tendenza verso un aumento della prevalenza di LM nei paesi ad alto reddito dovuto all’aumento dei tassi di sopravvivenza, i quali hanno raggiunto, per persone con tetraplegia, circa il 70% dell’aspettativa di vita della popolazione generale, e l’88% per persone con paraplegia completa (6). Tuttavia, i tassi di sopravvivenza nei paesi a basso e medio reddito rimangono bassi – fino ad 1 o 2 anni dopo la lesione in alcuni contesti – e ciò contribuisce alla prevalenza più bassa (7). E’ probabile che l’invecchiamento globale possa aumentare i tassi delle NTLM e che ci sia una lieve tendenza delle NTLM a crescere come proporzione delle LM totali. ■ Il cambiamento del profilo delle persone colpite Il tasso di incidenza delle LM raggiunge il picco nella prima età adulta e, in misura minore, nella vecchiaia. Mentre i giovani maschi dominano le statistiche, il profilo sta cambiano ed include un maggior numero di persone anziane e donne. Complessivamente, l’età al momento della lesione è in aumento. ■ Gli incidenti stradali, le cadute e la violenza costituiscono le tre cause principali di LM. Le lesioni da incidenti stradali prevalgono nella Regione africana, rappresentando 210
quasi il 70% dei casi. Anche in altre regioni dell’OMS queste sono una causa importante di LM, che vanno dal 40% nella Regione del sudest asiatico, al 55% nella Regione del pacifico occidentale. Le cadute, la seconda causa principale di LM, rappresentano poco più del 40% di tutti i casi nella Regione del sudest asiatico e in quella del Mediterraneo orientale. La Regione africana denuncia la percentuale più bassa (14%) di cadute, mentre le altre regioni OMS rivelano percentuali tra il 27 e il 36%. I tassi delle aggressioni, che includono la violenza e l’autolesione, principalmente da armi da fuoco, come causa di LM, variano notevolmente tra le regioni: le Americhe, la Regione africana e quella Mediterranea orientale segnalano percentuali rispettivamente di 14%, 12% e 11%. Gli infortuni lavorativi contribuiscono ad almeno il 15% di tutti i casi di TLM. In tutte le regioni, lo sport e le attività ricreative contribuiscono meno del 10% di tutti i casi di TLM. E’ stato dimostrato che il tentato suicidio contribuisce più del 10% dei casi di TLM in alcuni paesi. La tubercolosi può rappresentare in alcuni contesti fino al 20% di tutti i casi di NTLM. ■ Le persone con LM (PLM) muoiono prima. Gli studi indicano che le PLM hanno una probabilità da 2 a 5 volte maggiore di morire prematuramente rispetto alle persone senza LM. Le persone con tetraplegia hanno un rischio maggiore di quelle con paraplegia, e le persone con lesioni complete hanno un rischio maggiore rispetto a quelle con lesioni incomplete. La mortalità è particolarmente alta nel primo anno dopo la lesione (8) e i tassi di mortalità sono fortemente influenzati dalle capacità del sistema sanitario, specialmente durante la fase acuta. ■ Nei paesi a basso reddito, le patologie secondarie prevenibili rimangono le cause principali di morte delle PLM (9). Nei paesi ad alto reddito, le cause principali di morte di PLM sono cambiate negli ultimi decenni (10,
Capitolo 9 La strada da percorrere: raccomandazioni
11): mentre le complicanze urologiche sono in diminuzione, i problemi respiratori stanno diventando la causa principale di morte, in particolare la polmonite o l’influenza. La cardiopatia, il suicidio e i problemi neurologici sono altre cause di decesso.
■ I costi della LM sono più alti rispetto ad altre
2. Le ripercussioni personali e sociali della lesione midollare sono notevoli ■ La LM ha un effetto psicologico debilitante. Dal 20 al 30% delle PLM dimostra sintomi clinicamente significativi di depressione, una percentuale questa notevolmente più alta rispetto alla popolazione generale (12), anche se la maggioranza delle persone, alla fine, si adatta bene alla LM. Le PLM hanno una salute più precaria, ciò è dovuto in parte alle complicanze prevenibili, come le infezioni del tratto urinario e le ulcere da pressione. La LM è associata alla disgregazione familiare ma anche alla stabilità familiare. Subito dopo l’infortunio, la LM può avere un effetto negativo sulle relazioni personali ed è associata ad un tasso più alto di divorzio. Tuttavia, le relazioni iniziate dopo la LM in genere vanno meglio. Coloro che assistono i bambini e i giovani con spina bifida o con TLM, tipicamente sperimentano isolamento e stress. Minore partecipazione scolastica. E’ meno probabile che i bambini e i giovani con spina bifida o con LM acquisita frequentino la scuola e partecipino all’istruzione superiore. Essi affrontano ostacoli nella transizione tra scuola e istruzione superiore, e tra istruzione e lavoro. La LM è associata a tassi inferiori di partecipazione economica. I tassi medi globali di occupazione per le PLM sono soltanto del 37%, con il tasso più alto del 51% in Europa (13).
patologie paragonabili come la demenza, la sclerosi multipla, la paralisi cerebrale e il disturbo bipolare. In Australia, è stato stimato che i costi per tutta la vita (compresi i costi finanziari e quelli relativi all’onere della malattia) erano AU$5 milioni per una persona con paraplegia e AU$9.5 per una persona con tetraplegia (14). In genere, i costi indiretti, come la perdita del reddito, superano i costi diretti.
3. Le barriere ai servizi ed agli ambienti limitano la partecipazione e compromettono la qualità della vita ■ Politiche e forniture inadeguate. Spesso mancano politiche e servizi appropriati in ambiti quali l’inclusione scolastica, l’accessibilità ambientale e la riabilitazione. Ad esempio, nei paesi a basso e medio reddito, solamente dal 5 al 15% delle persone ha gli ausili di cui ha bisogno (15). In uno studio condotto nei Paesi Bassi, più della metà dei pazienti con LM doveva rimandare la dimissione dalla riabilitazione ospedaliera a causa di ritardi nell’ottenere le carrozzine (16). ■ Mancanza di fondi. Uno studio nigeriano, ad esempio, ha dimostrato che per oltre il 40% dei rispondenti con LM, i costi per la terapia in fase acuta rappresentavano più del 50% del loro reddito annuo (17). Analogamente, il costo è uno delle barriere principali quando si tratta di ausili. ■ Barriere fisiche all’accesso. Case, scuole, posti di lavoro e perfino ospedali sono spesso inaccessibili a persone che utilizzano le carrozzine. L’inaccessibilità dei trasporti costituisce un ostacolo rilevante alla partecipazione nella società, particolarmente per coloro che vivono nelle aree rurali. Ciò impedisce alle PLM di lasciare l’ospedale o l’abitazione dove sono assistiti e di diventare indipendenti. 211
■
■
■
■
Prospettive Internazionali sulla lesione del midollo spinale
■ Atteggiamenti negativi. Ci può essere la
percezione, ad esempio, che la tetraplegia è peggio della morte o che le persone in carrozzina non possono lavorare o avere rapporti intimi. Anche gli stessi familiari possono avere atteggiamenti negativi e basse aspettative. Molte volte i pregiudizi derivano da una mancanza di informazione e di conoscenza diretta. ■ Mancanza di informazione. Al personale riabilitativo possono mancare le informazioni e le competenze pertinenti alla LM. Ad esempio, la mancanza di competenze tra i fornitori dei servizi può impedire alle PLM di ricevere gli ausili e la tecnologia assistiva appropriata. Il personale dell’assistenza primaria può non conoscere le complicanze prevenibili della LM, o viceversa l’attenzione alla sola diagnosi di LM può comportare che le PLM non ricevano i controlli o le cure necessarie per i loro bisogni sanitari generali.
4. La lesione al midollo spinale è prevenibile ■ La morte e la disabilità associate agli incidenti stradali possono essere diminuite attraverso una maggiore attenzione alla sicurezza, al miglioramento delle strade e della viabilità, alla sicurezza dei veicoli e al comportamento dei conducenti (18). Ad esempio, in seguito alle prime leggi che hanno reso obbligatorio l’uso delle cinture di sicurezza, introdotte in Australia nel 1970, e agli sforzi governativi per migliorare la progettazione stradale e le regole circa la sicurezza in auto, c’è stato un calo di circa il 4% dell’incidenza annuale di LM causata da incidenti stradali (19). ■ Regolamenti relativi alla salute e alla sicurezza sul luogo di lavoro possono ridurre gli infortuni che si verificano nell’attività mineraria, nell’edilizia, nell’industria e nell’agricoltura. ■ Limitare l’accesso alle armi da fuoco ed ai coltelli previene gli infortuni e riduce i costi 212
per la società. Misure per limitare tale accesso comprendono i divieti, i piani per concedere le licenze, l’età minima degli acquirenti, il controllo dei precedenti ed i requisiti per la conservazione sicura. Tali misure sono state messe in atto con successo in Austria, Brasile ed in alcuni stati degli USA. ■ Gli infortuni sportivi e ricreativi possono essere minimizzati attraverso la migliore progettazione (ad. es. di piscine, attrezzature da gioco e piste da sci), l’informazione sulla sicurezza (ad. es. circa i pericoli del tuffarsi in acqua poco profonda, la formazione degli allenatori di rugby) e una maggior attenzione e consapevolezza che porti a ridurre gli infortuni durante la pratica sportiva. ■ La diagnosi e le cure tempestive possono ridurre la prevalenza di tubercolosi spinale (20) ed anche dei tumori spinali derivanti dal cancro. ■ I miglioramenti nella nutrizione riducono l’incidenza di spina bifida e di altri difetti del tubo neurale (21). E’ stato dimostrato che il supplemento volontario di acido folico per via orale peri-concezionale (tre mesi prima e dopo il concepimento) riduce il tasso di bambini che nascono con difetti del tubo neurale compresa la spina bifida (22, 23). Molti paesi che hanno la prassi di supplementare la farina di grano con l’acido folico hanno visto una diminuzione nell’incidenza di spina bifida (24–27).
5. Si può sopravvivere in seguito alla lesione midollare ■ La terapia pre-ospedaliera appropriata è vitale per la sopravvivenza immediata. Sono necessari il riconoscimento rapido, la valutazione tempestiva e la gestione appropriata della LM sospetta. La gestione pre-ospedaliera di LM traumatica richiede: una rapida valutazione, che include la misurazione dei segni vitali e del livello di coscienza; la gestione iniziale della lesione, che include la
Capitolo 9 La strada da percorrere: raccomandazioni
stabilizzazione delle funzioni vitali, l’immobilizzazione della spina dorsale per conservare la funzione neurologica fino al momento della stabilizzazione a lungo termine; il controllo della perdita di sangue, della temperatura corporea e del dolore; l’accesso rapido e sicuro al sistema sanitario. Idealmente le persone dovrebbero arrivare in terapia intensiva entro due ore, il che dipende da servizi adeguati di emergenza e di salvataggio. ■ La terapia in fase acuta assicura la stabilizzazione. La terapia in fase acuta può comportare l’intervento chirurgico o la cura conservativa, ma la diagnosi accurata di LM e delle condizioni concomitanti costituisce il primo passo vitale. Molti fattori dovrebbero essere presi in considerazione per determinare l’approccio più appropriato alla cura, tra cui il livello della lesione, il tipo di frattura, il grado di instabilità, la presenza di compressione neurale, gli effetti di altre lesioni, la tempistica della chirurgia, la disponibilità di risorse quali la competenza e le strutture mediche e chirurgiche appropriate, ed i benefici e i rischi. In tutti i casi le PLM e i loro familiari dovrebbero essere in grado di fare una scelta informata tra il trattamento conservativo e quello chirurgico. ■ L’assistenza sanitaria continuativa è necessaria per la sopravvivenza e per la qualità della vita. Con l’accesso all’assistenza sanitaria continuativa una persona può evitare o sopravvivere alle complicanze della LM come le infezioni del tratto urinario e le ulcere da pressione, rimanere in buona salute e godere di una vita lunga e piena. Le PLM spesso hanno una salute più precaria presentando, ad esempio, un rischio maggiore di infezioni del torace e di malattie cardiovascolari. Senza l’accesso all’assistenza sanitaria di base ed a prodotti come cateteri e cuscini appropriati, seguito da consigli per una vita sana, è più probabile che una persona con LM muoia prematuramente.
6. La lesione midollare non deve precludere la buona salute e l’inclusione sociale ■ Una persona con LM che ha accesso all’assistenza sanitaria, all’assistenza personale, se è necessaria, e agli ausili, dovrebbe poter tornare a studiare, vivere in modo indipendente, contribuire economicamente e partecipare alla vita familiare e comunitaria. ■ Dopo la stabilizzazione è necessario l’accesso all’assistenza medica appropriata in fase acuta e post acuta ed ai servizi riabilitativi, per assicurare che la massima funzionalità possibile e affinché la persona possa diventare il più indipendente possibile. Esistono diversi modelli di erogazione dei servizi, ma è stato dimostrato che i centri specializzati riducono i costi, le complicanze ed i ricoveri successivi rispetto ai servizi non specializzati. Le PLM danno grande priorità al raggiungimento del controllo delle funzioni vescicali ed intestinali. La terapia può migliorare la funzionalità degli arti inferiori e superiori, nonché insegnare le tecniche per raggiungere l’indipendenza nelle attività quotidiane. I servizi per la salute mentale ed i consigli sono importanti: la depressione è associata ad un minore recupero funzionale e ad un tasso maggiore di complicanze sanitarie. Anche l’informazione e il supporto per i bisogni sanitari sessuali e riproduttivi dovrebbero far parte della riabilitazione. ■ Gli ausili appropriati costituiscono componente essenziale della riabilitazione. Per fare un esempio, più del 90% delle PLM hanno bisogno di qualche forma di carrozzina. Le carrozzine devono essere appropriate per la persona e per l’ambiente. Altri bisogni di tecnologia per l’assistenza comprendono le modifiche in ed intorno alla casa, il controllo ambientale e a volte i sistemi di comunicazione per persone con tetraplegia.
213
Prospettive Internazionali sulla lesione del midollo spinale
■ I servizi dovrebbero favorire il ritorno all’i-
struzione e al lavoro. I gruppi di auto aiuto, gli edifici ed i trasporti accessibili, la riabilitazione professionale e le misure contro la discriminazione fanno sì che bambini ed adulti possano tornare a studiare, a vivere in modo indipendente, a contribuire economicamente ed a partecipare alla vita familiare e comunitaria.
di persone con disabilità possono dare forza e promuovere la partecipazione. L’accesso alle attività fisiche e allo sport può favorire il benessere fisiologico e psicologico.
3. Sfidare gli atteggiamenti negativi verso le PLM Come parte delle campagne di sensibilizzazione circa la disabilità in genere, questo può includere una serie di interventi tra cui l’istruzione durante il corso di laurea per medici e altri professionisti sanitari, attività in aula per ridurre il marchio socialee campagne di sensibilizzazione attraverso i mezzi di comunicazione sociali.
Raccomandazioni 1. Migliorare l’intervento del settore sanitario alla lesione midollare Per fare ciò occorre: sviluppare le capacità della forza lavoro sanitaria e riabilitativa; rafforzare la prevenzione e i servizi di pronto intervento; assicurare che i servizi medici e riabilitativi appropriati siano disponibili ed accessibili; migliorare il coordinamento per aumentare l’efficacia e ridurre i costi; ampliare la copertura dell’assicurazione sanitaria affinché la LM non porti a costi sanitari catastrofici; e individuare le strategie per fornire tecnologie per l’assistenza e prodotti sanitari appropriati.
4. Assicurare che gli edifici, i mezzi di trasporto e l’informazione siano accessibili Per fare ciò è necessario: avere standard nazionali applicabili per l’accessibilità; insegnare gli architetti e progettisti la progettazione universale; migliorare l’accesso agli alloggi sociali; promuovere il “progetto universale” di autobus per il trasporto rapido; imporre l’obbligo di accessibilità ai taxi privati; collaborare con le organizzazioni di persone con disabilità per consultarsi circa l’accessibilità e per controllarne i progressi.
2. Dare forza alle PLM e alle loro famiglie Le PLM hanno bisogno di informazione affinché possano assumersi la responsibilità della propria salute dopo la dimissione. Tale informazione dovrebbe essere condivisa con i familiari durante la riabilitazione. Il sostegno per i familiari e per gli altri caregivers può prevenire lo stress e l’esaurimento (burn-out). Nei paesi ad alto reddito, un modello di assistenza personale per la vita indipendente può dar forza ed essere conveniente economicamente per le PLM che hanno forti bisogni di sostegno. La riabilitazione comunitaria (CBR) è importante nei contesti a basso reddito. In tutti i contesti, le reti sociali, i gruppi di auto-aiuto e le organizzazioni 214
5. Sostegno al lavoro ed al lavoro autonomo La formazione professionale, gli orari di lavoro flessibili, l’occupazione assistita e i progetti riabilitativi comunitari che si concentrano sui mezzi di sostentamento, costituiscono opzioni promettenti per le PLM che tornano a lavoro. I piani di protezione sociale devono essere disponibili, a seconda del contesto e della condizione economica della persona, ma non devono agire come un disincentivo per il ritorno a lavoro.
Capitolo 9 La strada da percorrere: raccomandazioni
6. Promuovere la ricerca e la raccolta dei dati appropriata Vi è un bisogno urgente di aumentare e migliorare la raccolta dei dati di base e la ricerca sulla LM. Le statistiche disaggregate sulla LM, che utilizzano la terminologia standardizzata ICECI [Classificazione Internazionale della Causa Esterna della Lesione], possono agevolare l’analisi delle tendenze di incidenza ed aiutare nel monitoraggio delle risposte politiche. I registri delle LM, che raccolgono i dati direttamente dagli ospedali, insieme agli studi longitudinali di gruppo basati sulla popolazione, che coprono le aree principali della vita, rappresentano i metodi migliori per raccogliere i dati sulla LM. A livello di servizi, sono necessari maggiori dati su costi, outcomes e costi/benefici.
■ migliorare la fornitura di servizi sanitari, ■ promuovere standard per la raccolta nazio■ ■ ■ ■ riabilitativi e di supporto per PLM; nale di dati sulla LM, compresi i registri centralizzati di LM; garantire che esistano piani appropriati di assicurazione che possono proteggere le persone dai costi della lesione; favorire la consapevolezza pubblica, l’informazione e le iniziative educative che sfidano gli atteggiamenti negativi verso la disabilità; adottare standard appropriati di accessibilità che includono alloggi, trasporti ed edifici pubblici; assicurare che le politiche educative permettano a bambini ed adulti con LM di frequentare la scuola e l’università in base agli stessi criteri degli altri; garantire l’accesso alla riabilitazione professionale per aiutare le PLM a prepararsi per il lavoro; adottare leggi contro la discriminazione in linea con la CRPD (Comitato per i Diritti delle Persone con Disabilità).
■ ■
Passi successivi L’attuazione delle raccomandazioni richiede il coinvolgimento di diversi settori – sanità, istruzione, protezione sociale, lavoro, trasporti e alloggi – e di diversi attori – governi, organizzazioni della società civile (tra cui organizzazioni di persone con disabilità), professionisti, il settore privato e le PLM e le loro famiglie. I settori e gli attori devono lavorare insieme perché il lavoro di gruppo multidisciplinare è in grado di massimizzare il successo. E’ essenziale che i paesi facciano su misura le azioni per i loro contesti specifici. Laddove i paesi hanno risorse limitate, alcune delle azioni prioritarie, in particolare quelle che richiedono l’assistenza tecnica e lo sviluppo delle capacità, possono rientrare nel quadro della cooperazione internazionale su disabilità e sviluppo.
Gli operatori sanitari e gli assistenti sociali professionisti e le loro organizzazioni possono: ■ offrire assistenza sanitaria appropriata per LM, con un approccio multidisciplinare coordinato che include le PLM e i loro familiari; ■ dare forza alle PLM e ai loro familiari affinché possano prendersi cura della propria salute nella misura più larga possibile; ■ includere i temi relativi alla LM nei programmi di studio e di formazione per professionisti medici e di discipline affini per sensibilizzare circa la LM e promuovere la ricerca sulla LM; ■ intraprendere ricerche per determinare le migliori misure riabilitative possibili, allo scopo di ripristinare la funzionalità nei diversi contesti. 215
I governi possono: ■ investire in programmi efficaci di prevenzione primaria che siano basati sull’evidenza e rispettosi delle PLM;
Prospettive Internazionali sulla lesione del midollo spinale
Le organizzazioni di persone con disabilità e le organizzazioni non governative possono: ■ promuovere la creazione delle reti tra pari e ■ di organizzazioni per l’auto-aiuto, compreso il supporto per i piani di assistenza personale; contribuire alla consapevolezza pubblica, all’informazione ed alle iniziative educative che sfidano gli atteggiamenti negativi verso la disabilita; sostenere le PLM nell’accesso ad opportunità sportive, religiose, culturali e di svago; aiutare ad istruire e a dare forza alle PLM e alle loro famiglie su temi quali il mantenimento della salute, l’assistenza e il supporto, gli alloggi, l’accessibilità e la mobilità, l’istruzione e il lavoro; sviluppare iniziative riabilitative comunitarie nei contesti carenti di risorse ed in luoghi remoti.
Il mondo accademico può: ■ aumentare gli interventi basati sulle evidenza ■ entrare in contatto con chi prende le deciattraverso lo sviluppo della ricerca sulla LM; sioni politiche e con altri attori chiave per stimolare l’attuazione delle raccomandazioni di questo Rapporto; ■ promuovere l’accesso alla formazione specialistica, allo scopo di avere riserva sufficiente di operatori sanitari formati in modo adeguato; ■ far sì che le questioni dei diritti umani relative alla disabilità siano incluse nei programmi di studio durante i corsi di laurea per insegnanti, medici e professionisti collegati con la medicina; ■ togliere le barriere alla partecipazione delle PLM nel istruzione superiore e nella ricerca.
■ ■
■
Il settore privato può: ■ investire nello sviluppo di tecnologie per l’assistenza che siano appropriate e convenienti economicamente; ■ assicurare che i prodotti ed i servizi siano accessibili alle persone con disabilità, comprese le PLM, nei settori quali la sanità, lo sport, l’istruzione; ■ adottare la progettazione universale per i nuovi prodotti e servizi; ■ assumere persone con LM assicurando che il reclutamento sia equo, che vengano fornite ragionevoli facilitazioni e che i lavoratori che diventano PLM siano sostenuti per poter tornare a lavoro.
I fornitori dei servizi possono: ■ aiutare a rafforzare i servizi sanitari esistenti per LM (e sostenere la creazione di servizi nuovi), che sono sensibili alle risorse, appropriati e tempestivi; ■ raccogliere informazioni sulla LM che sono paragonabili internazionalmente e rendere questi dati disponibili in rapporti annuali pubblicati su Internet che sono facili da ricercare e trovare; ■ aiutare a garantire una transizione agevole tra cure ospedaliere, ambulatoriali e comunitarie attraverso la creazione di un approccio ai servizi coordinato, integrato e multidisciplinare; ■ coinvolgere le PLM e i loro familiari come partner nella pianificazione e nell’erogazione dei servizi, fornendo loro l’informazione e includendoli nel processo decisionale, nella pianificazione, nella definizione degli obbiettivi, nel monitoraggio e nella valutazione. 216
Le persone con lesione midollare e le loro famiglie possono: ■ istruire se stessi circa le questioni di man■ partecipare a programmi di supporto tra pari e di auto-aiuto; tenimento della salute con LM;
Capitolo 9 La strada da percorrere: raccomandazioni
■ contribuire all’istruzione comunitaria e alle
attività di sensibilizzazione; ■ avvalersi delle opportunità di tornare presto all’istruzione e al lavoro; ■ se opportuno, considerare la riqualificazione e lo sviluppo di attività di lavoro autonomo per migliorare le possibilità di sostentamento.
Conclusioni Mentre l’incidenza della LM traumatica e non traumatica può e deve essere ridotta, ci saranno sempre nuovi casi di LM. La lesione midollare continuerà a colpire soprattutto persone nel pieno
della loro vita. Assicurare l’intervento medico e riabilitativo adeguato, seguita da servizi di supporto e da ambienti accessibili, aiuterà a minimizzare il disagio per le PLM e le loro famiglie. Queste misure potranno anche ridurre i costi complessivi per la società in termini di dipendenza e di bassa produttività, e per l’individuo in termini di bassa autostima e qualità ridotta della vita. Si può prevenire e sopravvivere alla LM e questa non deve precludere la buona salute e l’inclusione sociale, ma l’azione da parte di governi e di altri attori principali è urgentemente necessaria. Senza azioni efficaci, la LM continuerà a rimanere troppo frequentemente una catastrofe.
Referenze 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11.
12. 13.
14.
15.
United Nations Department of Economic and Social Affairs, Population Division. World population prospects: the 2012 revision, 2013. DVD Edition. Dahlberg A et al. Prevalence of spinal cord injury in Helsinki. Spinal Cord, 2005, 43:47-50. doi: http://dx.doi.org/10.1038/ sj.sc.3101616 PMID:15520842 O’Connor PJ. Prevalence of spinal cord injury in Australia. Spinal Cord, 2005, 43:42-46. doi: http://dx.doi.org/10.1038/sj.sc.3101666 PMID:15326472 Noonan VK et al. Incidence and prevalence of spinal cord injury in Canada: a national perspective. Neuroepidemiology, 2012, 38:219-226. doi: http://dx.doi.org/10.1159/000336014 PMID:22555590 New PW et al. Prevalence of non-traumatic spinal cord injury in Victoria, Australia. Spinal Cord, 2013, 51:99-102. doi: http://dx.doi. org/10.1038/sc.2012.61 PMID:22665222 Middleton JW et al. Life expectancy after spinal cord injury: a 50-year study. Spinal Cord, 2012, 50:803-811. doi: http://dx.doi. org/10.1038/sc.2012.55 PMID:22584284 Gosselin RA, Coppotelli C. A follow-up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 Lidal IB et al. Mortality after spinal cord injury in Norway. Journal of Rehabilitation Medicine, 2007, 39:145-151. doi: http://dx.doi. org/10.2340/16501977-0017 PMID:17351697 Rathore MFA. Spinal cord injuries in the developing world. In: JH Stone, M Blouin, eds. International Encyclopedia of Rehabilitation, 2013. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/141/ Hagen EM et al. Traumatic spinal cord injuries – incidence, mechanisms and course. Tidsskrift for Den Norske Laegeforening, 2012, 132:831-837. doi: http://dx.doi.org/10.4045/tidsskr.10.0859 PMID:22511097 Leal-Filho MB et al. Spinal cord injury: epidemiological study of 386 cases with emphasis on those patients admitted more than four hours after the trauma. Arquivos de Neuro-Psiquiatria, 2008, 66:365-368. doi: http://dx.doi.org/10.1590/S0004282X2008000300016 PMID:18641873 Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http://dx.doi. org/10.1038/sc.2011.182 PMID:22270190 Young AE, Murphy GC. Employment status after spinal cord injury (1992–2005): a review with implications for interpretation, evaluation, further research, and clinical practice. International Journal of Rehabilitation Research, 2009, 32:1-11. doi: http://dx.doi. org/10.1097/MRR.0b013e32831c8b19 PMID:19057392 Access Economics for the Victorian Neurotrauma Initiative. The economic cost of spinal cord injury and traumatic brain injury in Australia. 2009 (http://www.tac.vic.gov.au/about-the-tac/our-organisation/research/tac-neurotrauma-research/vni/ the20economic20cost20of20spinal20cord20injury20and20traumatic20brain20injury20in20australia.pdf, accessed 9 January 2013). WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008.
217
Prospettive Internazionali sulla lesione del midollo spinale
16. Post MWM et al. Services for spinal cord injured: availability and satisfaction. Spinal Cord, 1997, 35:109-115. doi: http://dx.doi. org/10.1038/sj.sc.3100362 PMID:9044519 17. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:11341137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 18. Peden M et al., eds. World report on road traffic injury prevention. Geneva, World Health Organization, 2004. 19. O’Connor P. Trends in spinal cord injury. Accident; Analysis and Prevention, 2006, 38:71–77. doi: http://dx.doi.org/10.1016/j. aap.2005.03.025 PMID:16111641 20. Harries AD et al. The HIV-associated tuberculosis epidemic – when will we act? Lancet, 2010, 375:1906-1919. doi: http://dx.doi. org/10.1016/S0140-6736(10)60409-6 PMID:20488516 21. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/s00431-011-1492-8 PMID:21594574 22. Toriello HV. Policy and Practice Guideline Committee of the American College of Medical Genetics. Policy statement on folic acid and neural tube defects. Genetics in Medicine, 2011, 13:593-596. doi: http://dx.doi.org/10.1097/GIM.0b013e31821d4188 PMID:21552133 23. De-Regil LM et al. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database of Systematic Reviews, 2010 6:CD007950. Review. PubMed PMID: 20927767. 24. Flour Fortification Initiative. FFI Database. Atlanta, 2012. (http://www.sph.emory.edu/wheatflour/globalmap.php accessed 28 May 2012). 25. Williams LJ et al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995–2002. Pediatrics, 2005, 116:580-586. doi: http://dx.doi.org/10.1542/peds.2005-0592 PMID:16140696 26. Berry RJ et al. Folic Acid Working Group. Fortification of flour with folic acid. Food and Nutrition Bulletin, Review 2010, 31:S22–35. PubMed PMID 20629350. 27. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554
218
Appendice tecnica A Metodi utilizzati nelle revisioni sistematiche sui risultati epidemiologici (incidenza, prevalenza, eziologia, mortalità, costi) Il documento Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) [Elementi preferiti di Reporting per Revisioni sistematiche e Meta-analisi], è stato utilizzato come linea guida per assicurare una rendicontazione trasparente ed esaustiva della revisione sistematica e meta-analisi (1). PRISMA è approvato dalle organizzazioni leader nel settore e dalle pubblicazioni mediche (2).
Strategie di ricerca I database Pubmed/Medline e EMBASE, Latin American and Caribbean Health Sciences Literature (LILACS), Indian Medlars Centre (IndMed) e African Index Medicus (AIM) sono stati usati per ricercare pubblicazioni rilevanti uscite tra il primo gennaio 2000 ed il 15 agosto 2012. In questo rapporto, sono state incluse le lesioni midollari di origine traumatica e non traumatica, come definite nel Capitolo 4 e classificate dall’insieme dei Dati Internazionali sulla Lesione Midollare (3–5). I database sono stati utilizzati attraverso la ricerca libera dei termini di ‘lesioni midollari’, ‘lesione midollare’, ‘lesione del midollo spinale’, ‘paraplegi*’, ‘tetraplegi*’, ‘quadriplegi*’, ‘lesione midollare traumatica’, ‘danneggiamento del midollo spinale’ e ‘spina bifida’ e le abbreviazioni ‘LM’, ‘TLM’ e ‘NTLM’. Ulteriori termini nella ricerca libera attinenti ai risultati includono ‘prevalenza’, ‘incidenza’, ‘epidemiologia’, ‘causa del’, ‘causa del decesso’, ‘costi*’, ‘eziologia’, ‘etiologia’ e ‘mortalità’. Il testo intero è stato ricercato utilizzando i termini del dizionario MeSH (Medical Subject Headings) e le intestazioni di soggetto per LM ‘lesione midollare’, ‘paraplegia’, ‘quadriplegia’, ‘disrafismo spinale’, e per i risultati ottenuti ‘causalità’, ‘epidemiologia’, ‘incidenza’, ‘prevalenza’, ‘mortalità’, ‘eziologia’,‘causa del decesso’ e ‘costi e analisi dei costi’, se il database lo permetteva. La ricerca della letteratura è stata effettuata senza alcuna restrizione di lingue, la ricerca dei termini MeSH è stata limitata agli umani, la ricerca libera dei termini è stata fatta senza restrizioni, e sono state incluse solo le pubblicazioni con abstract disponibili. Inoltre, le liste di riferimento delle revisioni sistematiche ed i riassunti recuperati dalla letteratura sono stati analizzati per successive pubblicazioni, ed una ricerca online manuale è stata condotta per epub, prima della loro stampa, con le prime pubblicazioni uscite dal 1° agosto 2012 ad ottobre 2012 (come disponibili online il giorno 8 ottobre 2012). Le pubblicazioni analizzate sono state Spinal Cord (Midollo spinale), Journal of Spinal Cord Medicine (Pubblicazione della Medicina del Midollo Spinale), Spine (Spina dorsale), Journal of Rehabilitation 219
Prospettive Internazionali sulla lesione del midollo spinale
Medicine(Pubblicazione della Medicina Riabilitativa), Journal of Neurotrauma (Pubblicazione del Neurotrauma), Archives of Physical Medicine and Rehabiliation (Archivi di Medicina Fisica e Riabilitativa), PM&R (Pubblicazione Americana di Medicina e Riabilitazione),Epidemiology (Epidemiologia), International Journal of Epidemiology (Pubblicazione Internazionale di Epidemiologia), American Journal of Epidemiology (Pubblicazione Americana di Epidemiologia), European Journal of Epidemiology (Pubblicazione Europea di Epidemiologia), Journal of Epidemiology & Community Health (Pubblicazione di Epidemiologia e Salute Comunitaria), Journal of Clinical Epidemiology (Pubblicazione di Epidemiologia Clinica), European Spine Journal (Pubblicazione Europea Spina dorsale), Journal of Bone & Joint Surgery (Pubblicazione sulla chirurgia Ossea e delle Articolazioni), Acta Orthopaedica Scandinavica, Asian Spine Journal (Pubblicazione Asiatica Spina dorsale), Global Spine Journal (Pubblicazione Globale Spina dorsale), Journal of Neurosurgery: Spine (Pubblicazione di Neurochirurgia: Spina dorsale),Neurology India (Neurologia India), International Journal of Technology Assessment in Health Care (Pubblicazione Internazionale di Valutazione delle Tecnologie nell’Assistenza Sanitaria), Journal of Evaluation in Clinical Practice (Pubblicazione della Valutazione nella Pratica Clinica), e Journal of Health Services Research & Policy (Pubblicazione della Ricerca sui Servizi Sanitari e le Politiche). Infine, è stata condotta la ricerca dei dati nei siti web dei registri LM. Le pubblicazioni rilevanti con data di pubblicazione successiva al 1° gennaio 2000, che sono state trovate manualmente attraverso ricerche casuali durante il processo di sviluppo successivo del rapporto, sono state utilizzate per integrare le informazioni nelle sezioni corrispondenti. In casi singolari riguardanti i risultati associati ai ‘costi’, sono state incluse pubblicazioni importanti risalenti a prima del 2000, che sono state recuperate dall’analisi della lista di riferimento delle pubblicazioni.
Criterio d’inclusione Dopo un duplice controllo, i titoli e gli abstract dei risultati ottenuti sono stati analizzati da due revisori per determinare l’idoneità per l’inclusione nella revisione sistematica. Nel caso in cui non fosse stata possibile la determinazione d’idoneità sulla base dell’abstract, sono stati ottenuti gli articoli interi, tradotti quando necessario e revisionati. Le incertezze sono state risolte dal consenso di un gruppo formato da cinque ricercatori. Per i risultati ‘incidenza’ e ‘prevalenza’, sono state incluse nel rapporto le pubblicazioni se: (1) descrivevano la popolazione nel contesto della popolazione generale; e (2) includevano i sottogruppi eziologici principali (paraplegia, tetraplegia, TLM, NTLM, SB). Per gli articoli sulla ‘mortalità’ dovevano almeno definire una o più delle seguenti: (1) tassi di mortalità (stratificati o no); (2) mortalità relativa; (3) rapporto standardizzato di mortalità (SMR); e (4) aspettativa di vita. Nel caso della ‘eziologia’, gli studi sono stati inclusi se trattavano di: (1) TLM o NTLM; (2) distribuzione della causa di TLM e NTLM a seconda dei sotto insiemi delle specifiche dell’infortunio (ovvero incidenti automobilistici, sport, violenza); e (3) percentuali dei sottogruppi. Secondo l’analisi comparativa è stato necessario riclassificare i dati eziologici utilizzando la classificazione raccomandata da ISCoS (Insiemi di dati Internazionali sulla lesione midollare) (3,5).
Criterio d’esclusione Per tutti i risultati, sono stati esclusi gli studi che trattavano esclusivamente di una condizione legata ad un sotto insieme di LM (osteocondrodisplasia, neurosifilide, poliomielite, infezione HTLV, paralisi spastica ereditaria, sindrome da immobilizzazione, paralisi flaccida, Sindrome di Brown-Séquard, Sindrome centro-midollare di Schneider, sindrome SCIWORA, compressione maligna del midollo spinale), complicanze specifiche o comorbilità (dopo la chirurgia vascolare o spinale, cancro), minorità etniche e occupazioni
220
Appendice tecnica A
passate (veterani), circostanze singolari specifiche (LM legata all’occupazione) se non rappresentative dell’intera popolazione, e confronti tra i costi delle cure o dei sotto insiemi delle cure (trombosi, cauterizzazione, farmaci). Lo stesso è stato applicato per i casi singolari nei registri (ad es. incidente automobilistico nel registro traumi) o per i casi studio. Nel caso di spina bifida, sono stati estratti i dati dagli articoli solo se segnalavano dati di incidenza e, quando disponibili, da studi condotti prima e dopo la scoperta dei benefici dei supplementi nutritivi. Sono stati inoltre esclusi gli studi se i contenuti erano incompleti (ovvero assenza del numero di morti e di casi LM). Per quanto riguarda il US Spinal Cord Injury Model System (Modello del sistema statunitense per la lesione midollare) i dati sono stati estratti dal rapporto del 2011 visto che si è dimostrato il più ricco ed il più dettagliato nella presentazione dei dati in termini di stratificazione tra domini socio-demografici e temporali (6). Nel caso di articoli in lingua straniera che sono risultati idonei, il gruppo ha analizzato l’abstract inglese ed i casi più rappresentativi sono stati tradotti per estrarre i dati. Laddove le pubblicazioni erano in duplice copia o sovrapposte, è stato incluso nella revisione sistematica lo studio più recente e/o completo.
utilizzando il software per digitalizzare i grafici. Inoltre, per gli studi che fornivano informazioni sul numero totale di casi TLM o NTLM nel corso di un dato periodo di tempo ed in un bacino di utenza ben definito (per lo più una nazione), ma senza i tassi di incidenza, sono state ottenute stime della dimensione della popolazione specifiche alle varie nazioni dalle risorse disponibili su Internet (i database National Statistical Office o Global Burden of Disease per le varie nazioni) per stimare i tassi grezzi di incidenza.
Ricalcolo delle stime Nei casi in cui non erano disponibili i dati medi della popolazione, abbiamo derivato le stime dei dati medi della popolazione utilizzando le stime stratificate disponibili che sono state pesate relativamente alle popolazioni dei rispettivi strati.
Figura 2.5 Distribuzione di TLM per regioni OMS Sono stati selezionati studi sull’eziologia della TLM nelle popolazioni di adulti e di adulti e bambini insieme, per il calcolo della somma dei punteggi regionali di eziologia sulla base di una varietà di criteri. Quando disponibili, sono stati selezionati gli studi nazionali o quelli più ampi degli ultimi anni, ma solo se trattavano sia degli incidenti stradali che delle cadute. La sovrapposizione dei dati segnalati nello stesso anno ha portato all’esclusione degli studi meno stratificati tra l’eziologia o di quelli che classificavano il tipo di eziologia nella categoria ‘altro’. Negli Stati Uniti è stato utilizzato il più recente rapporto annuale NSCISC 2012 come fonte dei dati (6) anche per evitare problemi di sovrapposizione dei dati dello stesso anno e degli stessi sottogruppi utilizzati in studi specifici che si affidano ai dati dai Sistemi di Modello. Nella prima, è stata calcolata l’eziologia della TLM specifica alla nazione utilizzando la media pesata dalla distribuzione delle cause considerando la grandezza dei campioni degli studi disponibili. Nella seconda, è stata calcolata una 221
Estrazione dei dati I dati sono stati estratti dagli articoli interi sulla base delle caratteristiche degli studi, sulle informazioni riguardanti i criteri di inclusione ed esclusione, e tutti i dati rilevanti verso i risultati (incidenza, prevalenza, eziologia, mortalità, costi). La qualità dell’estrazione dei dati è stata sottoposta a verifiche utilizzando revisioni sistematiche esistenti recuperate dalla ricerca per il controllo incrociato dei dati riportati. I dati finali di sintesi sono stati successivamente ricontrollati in modo incrociato e confrontati con gli articoli originali da tre membri del gruppo. Quando i dati attinenti erano disponibili solo graficamente (ad es. grafico di Kaplan-Meier per la sopravvivenza cumulativa), i grafici analizzati sono stati convertiti in dati
Prospettive Internazionali sulla lesione del midollo spinale
stima regionale della TLM utilizzando la media pesata dalla distribuzione delle cause specifiche della TLM per nazione considerando la grandezza della popolazione nel 2011 per le nazioni che hanno fornito i dati. I dati sulla popolazione sono stati presi dalle risorse online dell’ufficio
statistiche delle Nazioni Unite (7). Da notare, i dati disponibili per Taiwan, Cina (8), sono stati utilizzati per calcolare la stima per la Cina, ma hanno avuto un piccolo peso sulla stima globale data la dimensione relativamente piccola del campione.
Referenze 1. Liberati A et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Medicine, 2009, 6:e1000100. doi: http://dx.doi.org/10.1371/journal. pmed.1000100 PMID:19621070 Endorsers PRISMA. (http://www.prisma-statement.org/endorsers.htm, accessed 26.6.2013). Biering-Sørensen F et al. International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi.org/10.1038/ sj.sc.3101930 PMID:16955072 ISCIDS. The International SCI Data Sets. International Spinal Cord Society (ISCoS) (http://www.iscos.org.uk/page.php?content=20, accessed 22 May 2013). New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord, advance online publication, January 2013. doi: 10.1038/sc.2012.160. doi: http://dx.doi.org/10.1038/sc.2012.160 National Spinal Cord Injury Statistical Center. Complete Public Version of the 2011 Annual Statistical Report for the Spinal Cord Injury Model System. Birmingham, Alabama, 2011. United Nations Statistics Division. (http://unstats.un.org, accessed 26.6.2013). Wu JC et al. Effects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of Neurotrauma, 2012, 29:889-897. doi: http://dx.doi. org/10.1089/neu.2011.1777 PMID:21510819
2. 3. 4. 5. 6. 7. 8.
222
Appendice tecnica B Limitazioni della fonte dei dati utilizzati nel Capitolo 2 Malgrado tutti gli sforzi possibili per utilizzare i dati migliori disponibili, ci sono diverse limitazioni nei dati utilizzati in questo capitolo, in particolare: ■ variazione nella definizione dei casi di LM e nel criterio d’inclusione; ■ variazione nella rappresentatività dei dati disponibili di LM. La rappresentatività effettiva dei dati non è sempre evidente, ovvero se le statistiche nazionali attingono dai dati nazionali, regionali o sub-regionali; ■ variazione nel livello di completezza dei dati raccolti (locali o nazionali); ■ qualità inadeguata del metodo di segnalazione. Diverse limitazioni specifiche sono state identificate in relazione agli indicatori principali utilizzati in questo rapporto. Sono le seguenti: ■ Incidenza: La popolazione d’origine dei casi (bacino d’utenza) è spesso poco definito, soprattutto negli studi che riportano i dati regionali, provenienti da diversi centri o da un singolo centro (ad es. non è sempre noto se l’ospedale è l’unico centro di riferimento regionale per la LM). Inoltre, per l’incidenza di TLM, è spesso poco chiaro se vengono inclusi gli individui che muoiono dalla LM al momento dell’infortunio. Per l’incidenza di NTLM, è spesso poco chiaro se vengono incluse le persone diagnosticate con LM alla fine del loro ciclo di cura vitale. ■ Prevalenza: La popolazione di riferimento dei casi è spesso poco definita. La maggior parte dei paesi non dispone di dati diretti di prevalenza, ed i dati indiretti sono di difficile accesso (ad es. dati dalle assicurazioni, dati dalle prestazioni di disabilità). Come risultato le stime di prevalenza vengono spesso calcolate da modelli di studi che si affidano a prove deboli di base, coinvolgono ipotesi audaci, e quindi hanno un alto livello di incertezza. ■ Mortalità: Solitamente non vengono descritti i criteri metodologici e le procedure per l’inclusione e l’esclusione dei casi nella valutazione di mortalità cumulativa (ad es. metodo Kaplan–Meier) o il modellare i tassi di mortalità o i fattori di rischio di mortalità (analisi del tempo all’evento, regressione di Cox). In particolare, pochi studi segnalano la perdita dei controlli continuativi e la completezza della constatazione della mortalità (censura a destra). Inoltre, spesso non è chiaro se i casi di mortalità precoce vengono inclusi nell’analisi (censura a sinistra). ■ Eziologia: gli studi dovrebbero aderire più strettamente alle raccomandazioni internazionali di ISCoS sulla classificazione e sulla gerarchia riportata per l’eziologia della TLM e della NTLM. In aggiunta, i casi della TLM legati al lavoro ed all’autolesionismo (tentati suicidi) hanno bisogno di documentazioni sistematiche (ovvero al di sopra della classificazione ISCoS; le cadute stratificate dal lavoro e suicidio, etc). 223
Appendice tecnica C Meta-analisi dei dati riguardanti la spina bifida Una meta-analisi ad effetti casuali sui dati d’incidenza* annuali estratti per la spina bifida è stata condotta per calcolare una stima sommaria per tre tipi di dati disponibili. Il tipo di dati, in ordine crescente di completezza e di uso preferenziale nell’analisi, includeva solo i dati delle nascite vive; dati delle nascite vive e morte; e dati delle nascite vive, morte e delle interruzioni di gravidanza. Le meta-analisi sono state elaborate con il pacchetto statistico STATA, versione 12.1, usando il comando ‘metan’. I tassi di incidenza annuali con errori standard sono stati utilizzati rispettivamente come stime puntuali e misure di varianza per i singoli studi. I risultati delle analisi sono mostrati graficamente come disegni Forest e sono stratificati a seconda del tipo di dati. Alcune delle variazioni osservate nei tassi di incidenza riportati possono essere dovute a diversi fattori tra cui la razza, lo stato socioeconomico, le tecniche di valutazione, e le influenze culturali (1,2). Per identificare gli effetti delle variazioni osservate sui tassi globali, un’analisi di sensitività è stata condotta attraverso l’esclusione di quegli studi che apparivano particolarmente eterogenei rispetto alla maggioranza degli studi, in particolare, lo studio condotto da Alasfoor et al. Oman (3) e studi per la Cina condotti da Li et al. (4,5). Quando si è escluso solo lo studio Oman, l’incidenza della spina bifida è scesa a 7,4/10 000. L’esclusione dei due studi di Li et al. ha risultato in un tasso di incidenza globale di 8,4/10 000, mentre l’esclusione di entrambi gli studi di Oman e dei due studi cinesi ha risultato in un tasso di incidenza di 7,2/10 000. È stata condotta un’analisi di un sotto gruppo, oltre ai risultati della meta-analisi, che considerava gli effetti del tipo di dati utilizzati per ogni studio tra cui la meta-analisi per il tasso di incidenza della spina bifida. L’analisi del sotto gruppo ha rivelato che il tasso di incidenza osservato negli studi che hanno utilizzato solo i dati delle nascite vive era di 4,5/10 000, mentre il tasso d’incidenza calcolato includendo tutti gli studi, indipendentemente dal tipo di dati, era di 8,4/10 000. * Osservazione: Nella letteratura della spina bifida, i termini ‘prevalenza’ ed ‘incidenza’ vengono utilizzati in maniera incoerente. Rothman et al. (6) definisce la percentuale dei neonati con qualche tipo di malformazione come una percentuale di prevalenza e non come tasso di incidenza. L’incidenza delle malformazioni è poi il verificarsi nella popolazione di embrioni. Tuttavia, per questo rapporto il termine ‘incidenza’ viene utilizzato quando sono state incluse le segnalazioni dei tassi di spina bifida, come gli studi che utilizzavano diversi tipi di dati, includendo i dati sulle interruzioni di gravidanza.
225
Prospettive Internazionali sulla lesione del midollo spinale
Referenze 1. Gardner BR, Strickland M, Correa A. Application of the automated spatial surveillance program to birth defects surveillance data. [Part A]. Birth Defects Research Part A., Clinical and Molecular Teratology Teratol, 2007, 79:559-564. doi: http://dx.doi.org/10.1002/ bdra.20363 PMID:17385687 Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 Li ZW et al. Prevalence of major external birth defects in high and low risk areas in China, 2003. Zhonghua Liu Xing Bing Xue Za Zhi, 2005, 26:252-257. PMID:15941530 Li ZW et al. Extremely high prevalence of neural tube defects in a 4-county area in Shanxi Province, China. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2006, 76:237-240. doi: http://dx.doi.org/10.1002/bdra.20248 PMID:16575897 Rothman KJ, Greenland S, Lash TL, eds. Modern Epidemiology. 3rd ed. Philadelphia, Wolters Kluwer Health/Lippincott Williams & Wilkins, 2008.
2. 3. 4. 5. 6.
226
Appendice tecnica D Meta-analisi dell’effetto della fortificazione degli alimenti con acido folico sui tassi di incidenza di spina bifida Il peso (i casi aggiuntivi di gravidanze con spina bifida dovuti alla mancanza della fortificazione degli alimenti con acido folico [acronimo inglese FAFF]) è stato stimato con le seguenti ipotesi e considerazioni: il numero globale di nascite vive funge da indicatore per tutte le gravidanze (includendo aborti spontanei, nascite morte, e interruzioni di gravidanza [acronimo inglese TOPs]), perché la spina bifida è una condizione relativamente rara. Pertanto i casi non identificati non avrebbero un grande effetto sull’incidenza stimata e il FAFF avrebbe un effetto simile sull’incidenza della spina bifida a livello mondiale. Per il calcolo del peso, sono state computate le stime regionali dei tassi storici d’incidenza della spina bifida per tenere in considerazione le variazioni regionali in modo da ottenere una stima più precisa. Il numero stimato di gravidanze con spina bifida potenzialmente prevenibili è stato basato sulla misura degli effetti di FAFF calcolati solamente da quegli studi che segnalano i tassi d’incidenza (acronimo inglese IR) della spina bifida nelle nascite vive, visto che i dati delle nascite a livello mondiale erano disponibili solo per le nascite vive. Inoltre, è stata elaborata una meta-regressione per determinare se alcune eterogeneità fra gli studi potessero essere spiegate da alcuni predittori misurati, in particolare il tasso di incidenza prima del FAFF e il tipo di dati utilizzati (solo nascite vive, vive, morte o TOPs). La meta-regressione è stata effettuata utilizzando STATA, versione 12.1, attraverso il comando ‘metareg’. I risultati della meta-regressione hanno suggerito che il tasso d’incidenza della spina bifida prima della legislazione FAFF era associata in maniera significativa agli effetti di FAFF. Tuttavia, non è stata osservata alcuna associazione tra il tipo di dati di nascita utilizzati e l’effetto di FAFF. Complessivamente, il modello ha spiegato il 92% dell’eterogeneità vista nella meta-analisi originaria (vedi Figura D.1). L’impatto del tasso storico d’incidenza, prima del FAFF sulla misura degli effetti di FAFF, è stato preso in considerazione durante il calcolo del numero di gravidanze con spina bifida potenzialmente evitabili; questa informazione è stata ottenuta dalla meta-regressione. Pertanto, se il peso della spina bifida è stato stimato utilizzando i tassi d’incidenza e le misure degli effetti calcolati da dati di sole nascite vive, potenzialmente 37 979 gravidanze con spina bifida potrebbero essere prevenute.
227
Prospettive Internazionali sulla lesione del midollo spinale
Rapporto di rischio (prima/dopo)
Visto che sono state incluse solo le nascite vive, è probabile, per diverse ragioni, che il numero di gravidanze potenzialmente prevenibili è sottostimato. Ad esempio, una gravidanza potrebbe essere interrotta con più probabilità se vi è il caso di spina bifida. Inoltre, anche se la letteratura non suggerisce che ci sia un rischio più elevato di nascite morte con la spina bifida, la mancanza di informazioni sulle nascite morte colpite dalla spina bifida potrebbe causare un’attenuazione della vera incidenza.
Figura D.1 Tassi d’incidenza della Spina Bifida prima del FAFF e l’effetto del FAFF (rapporto di rischio)
 0,8
0,6
0,4
0,2
0 0 10 20 30 40 50 60 70 Tasso d’incidenza della Spina Bi da prima del FAFF per 10 000 gravidanze Interpolazione dati solo nascite Stime studi solo nascite Interpolazione dati tutti i tipi di nascite Stime altri studi
228
Glossario
Accessibilità L’estensione nella quale un ambiente, servizio o prodotto può essere utilizzato dal maggior numero di persone possibili, ed in particolare da persone con disabilità. Accessibilità standard Uno standard è un livello di qualità considerato a norma. Il principio di accessibilità potrebbe essere stabilito dalla legge o da accordi, e successivamente specificato in dettaglio a seconda delle normative, standard e codici che possono essere obbligatori od opzionali.
sanitari, accademici, professionali, sociali e di altri servizi.
Comorbosità Una patologia aggiuntiva che un individuo può manifestare indipendentemente ed in maniera non correlata alla patologia primaria.
Convention on the Rights of Persons with Disabilities (CRPD) [Convenzione delle Nazioni Unite sui diritti delle persone con disabilità] Trattato internazionale, adottato presso le Nazioni Unite nel 2006, che specifica sia i diritti umani in generale sulla dignità, la non discriminazione, l’inclusione, l’accessibilità e l’uguaglianza per le persone con disabilità, sia i diritti umani specifici relativi a tutti gli ambiti della vita sociale – famiglia e comunità, istruzione, occupazione e accesso alle risorse sanitarie e sociali. La CRPD ha una esplicita dimensione di sviluppo sociale ed economico.
Tecnologia o strumentazione assistiva (AT) Qualunque oggetto o apparecchiatura, anche acquisito commercialmente, modificato o personalizzato, che viene utilizzato per incrementare, mantenere o aiutare una persona ad eseguire un compito o attività.
Riabilitazione con base comunitaria (CBR) Una strategia di sviluppo generale della comunità per la riabilitazione, la parità di opportunità, la riduzione della povertà e l’inclusione sociale delle persone con disabilità. Questo viene implementato attraverso lo sforzo collettivo delle persone con disabilità, delle loro famiglie e dei relativi enti pubblici e privati
Disabilità Nel ICF (vedi International Classification of Functioning and Health) un termine generico per menomazioni, limitazioni nelle attività e restrizioni nella partecipazione, denotando gli aspetti negativi dell’interazione fra 229
Prospettive Internazionali sulla lesione del midollo spinale
un individuo affetto da patologie e fattori ambientali e personali.
Incidenza della lesione midollare Il numero di nuovi casi di lesione midollare durante un periodo temporale specificato.
Ambienti accessibili Ambienti naturali ed antropizzati che agevolano la partecipazione dell’uomo attraverso la rimozione delle barriere e la fornitura di facilitazioni.
Fattore Ambientale Nel ICF, un qualsiasi aspetto dell’ambiente fisico, sociale ed attitudinale nel quale le persone vivono e conducono la loro vita, ad es. prodotti e tecnologie, l’ambiente naturale, sostegno e relazioni, atteggiamenti e servizi, sistemi e politiche.
International Classification of External Cause of Injury (ICECI) [Classificazione Internazionale della Causa Esterna dell’Infortunio] Una classificazione OMS che classifica il tipo di infortuni, la loro circostanza e la loro causa la quale è utilizzata per misurare e monitorare l’avvenimento degli infortuni.
Funzionamento Nel ICF, un termine per le funzioni corporee, per la struttura corporea, per le attività e la partecipazione. Denota gli aspetti positivi dell’interazione tra un individuo (affetto da una patologia) ed il contesto fattoriale dello stesso individuo (fattori ambientali e personali). Il termine “funzione” si riferisce solo alle funzioni del corpo.
International Classification of Functioning and Health (ICF) [Classificazione Internazionale della Salute e del Funzionamento] Una classificazione OMS che fornisce un linguaggio standard ed un quadro concettuale per la descrizione della salute e degli stati di funzionamento associati alla salute in associazione con l’esperienza delle patologie.
Patologia secondaria Una patologia aggiuntiva che un individuo con una patologia primaria può riscontrare derivante da una maggiore suscettibilità o vulnerabilità causata dalla condizione primaria, ad es. ulcere da pressione.
Insiemi di dati internazionali sulla lesione midollare Insiemi di dati contenenti dati riguardanti le categorie principali di caratteristiche fisiologiche e psicologiche legate alla lesione midollare e alla qualità della vita, appropriate per l’utilizzo in studi per testare terapie innovative ed ausili e strategie riabilitative.
Menomazione Nel ICF, una deviazione significativa nella struttura corporea o nella funzione fisiologica dei sistemi corporei (funzioni mentali incluse), basata sulle norme statistiche della popolazione. 230
Autobus inclinanti Autobus progettati per inclinarsi verso il basso dal lato delle porte d’entrata dei passeggeri, per un accesso facilitato alle persone con difficoltà motorie.
Glossario
Tasso di mortalità La proporzione tra le morti in una determinata popolazione o gruppo di individui in un’area e in un periodo di tempo definiti.
Progressiva realizzazione Un principio della legge sui diritti umani che riconosce alcuni dei diritti umani economici e sociali – come il diritto alla sanità – di difficile realizzazione in un breve periodo a causa delle restrizioni sulle risorse, ma richiede di realizzare il possibile con i mezzi a disposizione, e di realizzare progressivamente sempre di più in concomitanza con la disponibilità delle risorse.
Lesione midollare non traumatica (NTSCI) Ogni tipo di danno al midollo spinale da causa non traumatica, ed es. malformazione congenita/genetica come la spina bifida o danno acquisito da un’infezione, mancato afflusso di sangue (infarto), compressione da cancro o tumore, o dalla lenta degenerazione vertebrale causata da osteoartrite.
Ortesista – Protesista Un operatore sanitario che fornisce assistenza protesica ed ortotica ed altri ausili per la mobilità progettati per migliorare il funzionamento. L’assistenza ortotica coinvolge apparecchi esterni progettati per sostenere, raddrizzare o migliorare il funzionamento di una parte del corpo; gli interventi prostetici comportano la sostituzione artificiale esterna di una parte del corpo.
Paratransit Un mezzo alternativo di trasporto flessibile, pubblico o privato (ad es. mini-bus o taxi), che non segue un percorso o orario prestabilito, per venire incontro alle esigenze di mobilità delle persone con disabilità, gli anziani, o chiunque non sia in grado di utilizzare i mezzi di trasporto tradizionali. Noto anche come Servizi di Trasporti Speciali (STS).
Accomodamenti ragionevoli Modifiche necessarie e appropriate o adattamenti, che non impongono un onere sproporzionato o eccessivo, per assicurare che le persone con disabilità possano esercitare i loro diritti umani su base di uguaglianza con gli altri.
Ulcere da pressione Un’ulcera da pressione è una lesione localizzata alla cute e/o agli strati sottostanti, generalmente in corrispondenza di una prominenza ossea, quale risultato di pressione, o pressione in combinazione con forze di taglio e spaziano da piaghe o ferite lievi fino alla grave distruzione dei tessuti.
Riabilitazione Una serie di misure che assistono l’individuo che vive la disabilità (o è probabile che la vivrà) ad ottenere e mantenere il funzionamento ottimale nell’interazione con l’ambiente.
Diffusione della lesione midollare La somma totale dei casi riscontrati di lesione midollare in una data popolazione ad un dato momento.
Assistenza di sollievo La prestazione a breve termine, la sostituzione temporanea con un assistente sanitario 231
Prospettive Internazionali sulla lesione del midollo spinale
professionista per l’assistente informale, come un familiare, per persone che hanno bisogno di assistenza e che altrimenti potrebbero necessitare di essere poste permanentemente in una struttura fuori casa.
o trauma al midollo spinale che comporta una menomazione o perdita di funzionalità.
Registro lesioni midollari Una banca dati che raccoglie cartelle cliniche uniformi ed altre informazioni sulla lesione midollare di una popolazione nel tempo per valutare i risultati per la popolazione per ragioni scientifiche, cliniche o politiche.
Scuole – inclusive, integrate, speciali Nelle scuole inclusive, bambini con disabilità frequentano regolarmente le lezioni con altri di età equivalente, seguono il curriculum fin dove possibile, e ricevono risorse aggiuntive e supporto a seconda dei bisogni. Nelle scuole integrate, bambini con disabilità sono forniti di classi separate e di risorse aggiuntive nel contesto scolastico tradizionale. Nelle scuole speciali (anche conosciute come scuole segregate), bambini con disabilità sono forniti di servizi specializzati in contesti separati dalle istituzioni educative tradizionali.
Lesione Midollare Traumatica TLM (TSCI – Traumatic spinal cord injury) Ogni lesione al midollo spinale causata da un trauma o danno risultante da una applicazione di una forza esterna di qualsiasi magnitudine, ad es. nell’evento di un incidente stradale, cadute o atti di violenza.
Edilizia Sociale L’edilizia sociale è l’edilizia offerta, generalmente dal governo locale o dalle ONG, a basso costo e su una base sicura, alle persone che necessitano di un alloggio (conosciuta anche come “alloggi a canone moderato” o “alloggi Edilizia Residenziale Pubblica”).
Catena dei trasporti Tutti gli elementi che compongono un viaggio, dal punto di partenza fino alla destinazione, includendo gli accessi pedonali, i veicoli ed i punti di trasferimento.
Progettazione universale Principi per la progettazione di prodotti, ambienti, programmi e servizi che possono essere utilizzati da tutti, con la massima diffusione possibile, senza il bisogno di adattamenti aggiuntivi o progetti specializzati.
Protezione sociale Programmi sociali che puntano a ridurre la deprivazione ed il bisogno non colmato derivanti da condizioni come la povertà, la disoccupazione, l’anzianità e la disabilità.
Riabilitazione professionale Programmi designati a ripristinare o sviluppare le capacità delle persone con disabilità per assicurare, mantenere e progredire nell’occupazione adatta, ad es. formazione professionale, consulenza professionale, e servizi di collocamento.
Lesione Midollare LM (SCI – Spinal Cord Injury) Ogni lesione al midollo spinale da cause traumatiche e non traumatiche (vedi anche le definizioni di lesione midollare traumatica e non traumatica in questo glossario). Danno
232
Indice
[A] Able Disabled All People Together (ADAPT) [Abilita Disabili Tutte le Persone Insieme ] 186 Accessibilità 157, 211, 214, 229 misure trasversali 160 servizi sanitari 105, 114
Accessibilità economica 114, 170, Accettazione 140 Accomodamento 108, 179, 231 luogo di lavoro 194–6 scuole 184–5
Adattamenti in casa 161 Adattamento alla LM 129, 146, 188 Afghanistan mielolesione legata alla violenza 53 piccoli reparti per SCI 105
Armi da fuoco 21, 53–4, 210, 212 ASIA Impairment Scale (ASIA A-E) [Scala gravità menomazione] 32 Aspettativa di vita 23, 25–7, 87, 210 Assistenti personali 135 Assistenti sociali professionisti 215 Assistenza 132–8 Assistenza comunitaria 145 Assistenza di emergenza Assistenza di sollievo 135 Assistenza formale 134 Assistenza informale 133–134 Assistenza pre-ospedaliera 27, 71, 76, 212–213 Assistenza primaria bisogni non soddisfatti 100 lacune di conoscenza 108–109, 212
Africa alloggi 158 infortuni in miniera 57 spina bifida 182 tecnologie assistive 110
Allocazione delle risorse 4 Alloggiamento 158, 161–64, 170 Ambienti accessibili alloggi 158, 161–4, 170, 214–5 edifici pubblici 159, 166, 170, 215 partecipazione all’istruzione 157, 217, 230 partecipazione all’occupazione 184 raccomandazioni 168–170 trasporti 84, 157–160, 164–6, 170, 185, 189, 214–5, 231–2
Ambienti virtuali 115 Americans with Disabilities Act (1990)[Legge statunitense sui disabili (1990)] 160, 193 Anatomia del midollo spinale 5–6 Andare sullo snowboard 61 Animali di servizio 195 Apparato respiratorio 25–26, 74–75, 89 Approcci indirizzati alla persona 107 Approccio con sistemi sicuri 48–49, 212
Assistenza residenziale 134 Assistenza sanitaria Assistenza sanitaria post-acuta 71, 77–8, 213 Assistenza sociale 196–197, 232 Assistive Technology Act (1998) [Legge sulle Tecnologie Assistive 1998] 112 Atelettasia 75 Atteggiamenti 130–2, 144, 187, 212, 215 Atteggiamenti collettivi 130 Atteggiamenti degli insegnanti 187–188 Attività fisica 142 Attori 213–5 Ausili per evacuazione 86 Ausili per la comunicazione 85 Ausili per la cura personale 86 Ausili per la mobilità 84 Ausili per la mobilità personale 83, 84–85 Ausili per la toelettatura 86 Ausili per le attività domestiche 86 Ausili per l’igiene 86 Ausili per mangiare e bere 86
233
Prospettive Internazionali sulla lesione del midollo spinale
Ausili per vestirsi 86 Ausilio appropriato 76 Australia atteggiamenti degli operatori sanitari 131 cliniche volanti 106 costi associati alla SCI 28–30, 213 disponibilità dei servizi 104 gestione pre-ospedaliera 27 incidenza della mielolesione non traumatica 22 incidenza della mielolesione traumatica 17, 18–19 lm legata alla violenza 53 patologie secondarie 25 prevalenza della lesione midollare 15, 16, 210 problemi di reddito 196 registro alloggi 164 registro centrale mielolesioni 30 riduzione della mielolesione negli incidenti stradali 210 rischio di mortalità 25 risorse umane 108, 112, 118
Brazil’s Center for Independent Living 160 [Centro Brasiliano per Vivere Indipendentemente] Bulgaria, edifici pubblici 166
[C] Cadute 20–3, 27, 48, 210 prevenzione 50, 51
Calamità naturali 62, 168 Canada alloggio 161 atteggiamenti collettivi 130 costi associati alla SCI 26–30 incidenza della mielolesione non traumatica 22 incidenza della mielolesione traumatica 17, 18, 19 lavoro autonomo 195 mielolesione legata all’ alcol e droghe 20 mielolesione legata alla violenza 20 prevalenza della lesione midollare 16, 17, 210 Rick Hansen Spinal Cord Injury Registry [Registro mielolesioni Rick Hansen] 30 rischio di mortalità 25 strumenti per l’accessibilità nei comuni 168 tutela sociale 196
Autobus 165 Autobus con sistema di inginocchiamento laterale 165 Auto-efficacia 141 Autogestione 107 Autolesionismo 20, 53 Autonomia 86 Autostima 139–141 Azione di governo 215–16
Cancro prevenzione del 57 secondario 27
[B] Back-Up Trust 142, Badanti 133–4 bambini come 139 formazione e sostegno 133 tecnologie di supporto 86
Capacità polmonare 74 Cardiopatia ischemica 26, 87 Cardiovascolare 88 Carrozzine abbandono ed inutilizzo delle 102, 108 bisogno delle 83 erogazione dei servizi 102 posto di lavoro 194 progressi tecnologici 113–4 servizi all’utente in Romania 113 standard di accessibilità 160 tipi di 84 valutazione inadeguata delle 102
Bambini come badanti 139 Bangladesh atteggiamenti collettivi 130 problemi legati all’occupazione 188–199 supporto sociale 133
Benessere 88 Bisogni non soddisfatti 99–100 BokSmart 61 Boston City Hospital [Ospedale Città di Boston] 5 Botswana, comprensione della condizione della disabilità 187 Brasile assistenza informale 133, 134 campagne per l’accessibilità 160 mielolesione legata alla violenza 53 piccoli reparti per SCI 105 tendenze demografiche nella mielolesione traumatica 21 trasporti 164
Coinvolgimento delle parti interessate 62–63, 101–102, 104 Caschi da moto 51 Catena dei trasporti 158, 232 Catetere a permanenza 78 Catetere maschile esterno 78 Cateteri sovrapubici 78 Cateteri uretrali 78 Cateteri urinari 73–4, 76, 78 Cateterismo intermittente 78 Cateteterismo 73–4, 76, 78 Cauda equina 5, 72
234
Indice
Centralizzazione dell’assistenza 102 Centre for the Rehabilitation of the Paralysed [Centro per la riabilitazione dei Paralizzati] 191 Chirurgia ricostruttiva 77 Cina assistenti scolastici 188 collasso polmonare 74 complicazioni circolatorie 73 incidenza della mielolesione traumatica 17 interventi educazionali nelle aule 130 istruzione universitaria 180–7, 189–199 mielolesione legata alle cadute 21 patologie croniche 87 relazioni con i partner 136 relazioni famigliari 136 riabilitazione in seguito al terremoto Sichuan 103 terapia cognitivo-comportamentale 141
CREATE 184 Cultura dell’accessibilità 168 Cura della pelle 75–76, 89
[D] Danimarca edilizia sociale 164 normative e politiche dell’istruzione 181
Cinture di sicurezza 20–21, 51, 212 Circolare con i risciò 165–6 Colombia formazione con problemi di accessibilità 161 legge sulle armi 53
Dati provenienti dalle assicurazioni 30, 31 Dati sulle cartelle sanitarie 30,31 Definizioni 33 Definizioni dei casi 33 Definizioni mediche 33 Depressione 83, 133, 181, 211 Difetti del tubo neurale 55, 212 Differenze fra i sessi mielolesione non traumatica 22 mielolesione traumatica 18–21 ruolo del badante 133–4
Comorbosità 229 Complicanze urologiche 25 Complicazioni della mielolesione guarda patologie secondarie Complicazioni tra le interazioni di nervi muscoli e ossa 74 Comunicazione aumentativa e alternativa 85 Conservazione delle cartelle cliniche 33 Consortium for Research on Educational Access Transitions and Equity (CREATE) [Consorzio per la Ricerca sull’Accessibilità alla Formazione , alla Transizione ed all’Equità] 184 Contattare persone con disabilità 130 Contesto socio-economico 114 Contesto storico della SCI 5, 7 Controllo neurologico dei dispositivi ausiliari 116 Conus medullaris 6 Convention on the Rights of Persons with Disabilities (CRPD) [Convenzione sui Diritti delle Persone con Disabilità] 4, 7, 13, 129, 179 Coordinamento dei servizi 105 Coordinamento del servizio 105 Coping effectiveness training (CET) [affrontare la formazione per l’efficacia] 141 Costi associati alla SCI 4, 15, 26–28, 112–114, 157, 211 Costi direttamente associati alla mielolesione 26–9 Costi indirettamente associati alla mielolesione 26, 27 Council of Canadians with Disabilities 160
Diffusione della mielolesione 14, 15–17, 210, 231 Dirigenti scolastici 187 Diritti umani 7, 8 Disabilità cambiamento concettuale 7 definizione 229 interventi sociali 7–8
Disabled Students Allowance [Indennità per Studenti con Disabilità] 185 Disfunzione erettile 80 Disponibilità dei servizi 104 Dispositivi di ritenuta per trasporto bambini 51 Disreflessia autonomica 74 Disturbi vascolari 22 Disturbo da stress post-traumatico 138, 140 Divorzio 137, 211 Doccia 86 Dolore 5, 75 Dolore muscolo-scheletrico 75 Dolore neuropatico 75
[E] Edifici pubblici 159, 166–168, 170 Edilizia sociale 158–165, 232 Effetti della mielolesione 4, 72–76, 211 Effetti della mielolesione sulla salute 72–76 Effetti psicologici della mielolesione 190, 211 El Salvador , legge sulle armi 53 E-learning [tele-apprendimento] 110 Emirati Arabi Uniti, edifici pubblici 159
235
Prospettive Internazionali sulla lesione del midollo spinale
Equitazione 61 Erogazione dei servizi 102–108, 111, 117–118 Escola Aberta 185 Esercizio 80, 135–6 Esigenze dell’ assistenza sanitaria 72, 76–90 assistenza post-acuta 71, 77–83, 213 assistenza pre-ospedaliera 27, 71, 76, 212 bisogni non soddisfatti 99–100 inadempienza dei servizi 103 mantenimento della salute 71, 87–9, 213 raccomandazioni 86–90 riabilitazione 71, 77–83, 213 rischio di mortalità 25–6 terapia in fase acuta 71, 76–7, 213
Formazione assistenti personali 135 cambiamento degli atteggiamenti 130–132 famiglie 110 fronteggiare nuove capacità 140–141 non operatori sanitari 110 problemi di accessibilità 160–161 professionale 190–191 professionisti della riabilitazione 109
Formazione professionale 190–3 Francia adattamento alla mielolesione 129, 146, 188 atteggiamenti degli operatori sanitari 131 gruppi di auto-aiuto 141 incidenza della mielolesione traumatica 17, 18 mielolesione correlata allo sport 20 movimento delle persone con disabilità 142 partecipazione all’istruzione 181–5
Esplosioni di bombe 53 Estonia incidenza della mielolesione traumatica 17 rapporto standardizzato di mortalità 25
Età mielolesione non traumatica 54 mielolesione traumatica 76–7, 83, 115, 137, 180, 190–7, 209
Eziologia della mielolesione 14, 20–3
[F] Famiglie come badanti 133–4 formazione e sostegno 111 relazioni 136–8, 211
Fronteggiare nuove capacità 136 Funzionamento 80–1, 230 Funzione intestinale 78, 88 Funzione neurologica 26, 72, 89 Funzione neurologica autonomica 73 Funzione sessuale 79–80, 89, 137,138
[G] Genitorialità 138 Germania edifici pubblici 166 partecipazione sportiva 142
Farsi il bagno 86 Fattore ambientale 230 European Spinal Cord Injury Federation (ESCIF) [Federazione Europea Mielolesioni] 143 Dichiarazioe politica 102
Fertilità 79 Figi, assistenza informale 133–4, 136 Finanziamento 153 alloggi accessibili 161–3 istruzione 185 lavoro autonomo 195 rafforzamento dei sistemi sanitari 111, 113, 115, 117
Gestione della vescica 73, 78–9 Ghana, problemi di reddito 196 Giappone Giochi Paraolimpici 7 Global Spinal Cord Injury Consumer Network [Rete Globale dei Consumatori con Lesioni Spinali] 143 Grado di lesione classificazione della disabilità secondo il livello di gravità 5 costi 26 effetti sulla salute 72 rischio di mortalità 25
Finlandia incidenza della mielolesione traumatica 17, 18 prevalenza della mielolesione traumatica 14–7, 210, 212, 219, 223, 225 rischio di mortalità 14, 24 tentato suicidio correlato alla mielolesione 20 trasporto privato 166
Gravidanza 80 Gravità della lesione classificazione della disabilità secondo il livello di gravità 5 costi 26 effetti sulla salute 72 rischio di mortalità 25
Flex housing (case trasformabili) 164 FLIPPER 165 Fondo fiduciario per Lesioni al Midollo Spinale 140–141 Fonte dei dati 30, 221
Grecia differenze fra i sessi nell’incidenza della mielolesione traumatica 18 relazioni con i partner 137
236
Indice
Gruppi di auto-aiuto 141–142 Gruppi mobili di consultazione 105 Guatemala, tecnologie assistive 112 Guida 86 101–02, 116–17 Guttmann, Ludwig 5,7
[H] Haiti, cambiamento degli atteggiamenti 132 HIV 54
[I] Immersioni in acque profonde 62 Incidenti stradali 20–21, 22, 210 prevenzione 48–51, 212
International Classification of Functioning and Health (ICF) [Classificazione Internazionale della Salute e del Funzionamento] 8, 9, 34, 230 International Standards for Neurological Classification of SCI [Standard Internazionali per la Classificazione Neurologica della Mielolesione] 32, 34 International Standards Organization (ISO) [Organizzazione per gli Standard Internazionali] 111 Interventi psicologici 141 Intestino neurogeno 78–79 Invecchiamento della popolazione 15, 27, 162–4, Ipotensione 73 Ipotensione ortostatica 73 Irlanda differenze fra i sessi nell’incidenza della mielolesione traumatica 19 edifici pubblici 167 finanziamenti per l’istruzione 185 incidenza della mielolesione traumatica 18
Incidenza della mielolesione 14, 17–19, 22, 209, 230 Incontrarsi 137 Indagini nazionali 30–31, 31 India mielolesione legata alle infezioni 23 problemi di reddito 196 problemi legati all’occupazione 189, 191, 192, 193 relazioni con i partner 137 sostegno educativo 186
Italia, trasporti FLIPPER 165 Islanda incidenza della mielolesione traumatica 17 prevalenza della mielolesione traumatica 15
Indicatori epidemiologici per SCI eziologia 14, 20–3, fonti dei dati 30–2, 223 incidenza 14–9, 22, 230 metodi di revisione sistematica 219 prevalenza 14–7, 210, 212, 219, 223, 225 problemi dei dati e preoccupazioni 33–4 raccomandazioni 34 tassi di letalità 14 tasso standardizzato di mortalità 14, 25
Israele prevenzione alla spina bifida 54 tentato suicidio correlato alla mielolesione 21
Istruzione secondaria 181 Istruzione superiore 181, 183–184 Istruzione universitaria 181–5 Istruzione vedi partecipazione all’istruzione
[J] Jobs Accommodation Network (JAN) [Rete dedicata all’accesso equo del posto di lavoro] 194
Indipendenza 86, 130, 139, 182 Infezioni del tratto urinario 73–4 Influenza 25, 26 Infortuni da coltello 53, 54, 212 Infortuni sul lavoro 21, 210 Insiemi di dati Internazionali sulla mielolesione 32, 34, 230 Insufficienza respiratoria 75 International Classification of Diseases (ICD) [Classificazione Internazionale delle Malattie] 32, 33–34 International Classification of External Cause of Injury (ICECI) [Classificazione Internazionale della Causa Esterna dell’Infortunio] 32, 34, 230
[K] Kenya alloggiamento 162 assistenza informale 133 atteggiamenti collettivi 130 istruzione dei genitori 139 partecipazione all’istruzione 180, 185 supporto sociale 134
[L] Laboratori protetti 191,193 Lacune di conoscenza 108–9, 110, 158, 212 Lavorando Lavoro autonomo 195–196, 214 Leggi sulla guida in stato di ebbrezza 51
237
Prospettive Internazionali sulla lesione del midollo spinale
Legislazione 51, 54, 101, 166–7, 181–2, 193 Legislazione antidiscriminatoria 167 Lesione completa 25, 72 Lesione incompleta 5, 72 Libano, la consapevolezza della disabilità Libre Acceso 160 “Lifetime Homes” [Case per una Vita] 162 Limitazione delle attività 73–4 Linee guida basate sulle prove 119 London Accessible Housing Register [Registro Londinese Alloggi Accessibili] 164 Luci diurne 51
Mielolesione legata allo sport 20–21, 210 prevenzione 57–62
Mielolesione lombare 5 Mielolesione legata alla violenza 20,21, 53 Mielolesione legata alle attività ricreative 20, 210 prevenzione 57–62, 212
Mielolesione non traumatica cause 5 costi 26, 28 crescente incidenza 17, 209 definizione 231 eziologia 22–23 incidenza 22 prevalenza 16, 17, 210 prevenzione 54–55 sottostima 33 terapia in fase acuta 77
[M] Malattia al midollo spinale 22 Malattia cardiaca 26, 87 Malattia infettiva 23, 54–5, 55 Malattie autoimmuni 23 Malawi, tecnologie assistive 104 Malaysia formazione con problemi di accessibilità 161 partecipazione all’istruzione 184 problemi di reddito 196 problemi legati all’occupazione 188
Mielolesione pediatrica incidenza della mielolesione traumatica 19 relazioni familiari 138, 211 tecnologie assistive 87
Mielolesione toracica 5 Mielolesione traumatica assistenza pre-ospedaliera 76–77 cause 5 costi 26 definizione 232 diffusione 15,16, 209–210 eziologia 20–21 incidenza 17–19, 209 prevenzione 47–54 tendenze demografiche 21 terapia intensiva 76–77
Mantenimento della salute 71, 87–89, 213 “Map of Accessible Sofia” [Mappa dei luoghi accessibili] 167 Margine della salute 87, 211, 213 Margine più sottile della salute 86–87, 210 Margine più stretto della salute 87, 211, 213 Matrice di Haddon 48 Menomazione 230 Messico campagne per l’accessibilità 160 trasporti 166
Mestruazione 79 Metodi di classificazione dello stato di salute 32 Metropolitane 165 Mezzi di trasporto 85, 158–159, 164–166, 170, 190–191, 211 Micro finanza 196 Mielolesione definizione 33, 232 la dimensione medica 5 la dimensione storica 5, 7
Mielolesione cervicale 5 Mielolesione correlata all’alcol 20 Mielolesione correlata alla droga 20 Mielolesione legata al lavoro 20, 212 prevenzione 54, 57, 214
Minerario 57 Minibus 165–166 Modelli di risarcimento 115 Modello di estensione dei servizi 105 Modello NHV 103 Modello sul corso della vita 139 Moderazione del traffico 51 Modificazioni ambientali 76 Mondo accademico 216 Morte Motivation Romania Foundation (MRF) [Fondazione Rumena per l’Incoraggiamento] 113 Motivazione 108, 142 Movimento delle persone con disabilità 7, 142 Mozambico tecnologie assistive 104 trasporti 166
Munro, Donald 5
238
Indice
[N] Namibia, tecnologie assistive 104 National Resource Centre for Inclusion [Centro Nazionale delle Risorse per l’Inclusione] 186 Nepal mielolesione legata alle cadute 20 problemi di reddito 196
Osteoporosi 74
[P] Pacchetto di partecipazione 197 Pacemaker frenico 75 Paesi a reddito medio costi associati alla SCI 114 diffusione della mielolesione 210 fornitura della carrozzina 104 gruppi di auto-aiuto 142 partecipazione all’istruzione 180, 182, 184 problemi legati all’occupazione 189 protezione sociale 196 risorse umane 108 supporto insufficiente alle tecnologie assistive 100 tecnologie assistive 110, 211 vivere con la mielolesione 3
Nigeria costi associati alla SCI 29, 114, 211 edifici pubblici 159 formazione e sostegno del caregiver 110 incidenti stradali 20 mielolesione legata allo sport 21 rischio di mortalità 26
Norvegia finanziamento all’istruzione 185 incidenza della mielolesione traumatica 18, 19 mielolesione legata alla violenza 21 patologie secondarie 26 pianificazione finanziaria per alloggiamenti 162–163 prevalenza della mielolesione traumatica 16 rapporto standardizzato di mortalità 25
Paesi a basso reddito alloggiamento 158 assistenza formale 134 costi associati alla SCI 114 diffusione della mielolesione 210 fornitura della carrozzina 104, 110 gruppi di auto-aiuto 141–142 infortuni in minera 57 lavoro autonomo 195 partecipazione all’istruzione 180, 182, 184, 185 patologie secondarie 26, 210 problemi legati all’occupazione 189 rischio di mortalità 3, 15 risorse umane 108 supporto insufficiente alle tecnologie assistive 100 tecnologie assistive 110, 111, 211
Nuova Zelanda assistenti personali 136 gruppi di auto-aiuto 142 prevenzione infortuni nel rugby 60–61 progetto “Accessible Christchurch” 168 programma Kaleidoscope per la riabilitazione professionale 192 sistema di indennizzo 115
[O] Occupazione assistita 192–194 Occupazione posti letto 158 Oggetti affilati 53, 54 Operatori sanitari 215 atteggiamenti 131 con disabilità 131
Paesi ad alto reddito aspettativa di vita 25 assistenza comunitaria 134 costi associati alla SCI 114–15 diffusione crescente della SCI 210 finanziamento all’istruzione 185 formazione professionale 190, 191 lavoro autonomo 195 normative e politiche dell’istruzione 181 patologie secondarie 25–26 protezione sociale 196 registri centrali della SCI 30 rischio di mortalità 3, 15, 210 supporto insufficiente alle tecnologie assistive 100–101
Organizzazione 101–2, 116–7 Organizzazioni delle persone con disabilità 216 Organizzazioni di volontariato 133 Organizzazioni e reti dei consumatori 143–4 Organizzazioni non governative (ONG) 49, 102, 107–8, 110, 114, 135, 142, 186, 196, 215 Ortesi 84 Ortesi di arto 84 Ortesi spinali 84 Ortesista-protesista 231 Ospedale Stoke Mandeville 7 Osservatori 109 Ossificazione eterotopica 74
Paesi Bassi assistenza informale 133 assistenza sociale 196 edilizia sociale 164 fornitura della carrozzina 211 incidenza della mielolesione traumatica 18
239
Prospettive Internazionali sulla lesione del midollo spinale
problemi legati all’occupazione 189, 192 relazioni con i partner 137 soddisfazione di vita dopo la mielolesione 139 supporto insufficiente alle tecnologie assistive 100–101 trasporti RegioTaxi KAN 165
Pakistan, gestione intestinale 79 Paraplegia 5 Paratransit (mezzi di trasporto per persone con disabilità) 165 Partecipazione all’istruzione adattamenti 185 barriere ambientali 132, 139, 157 cambiamento degli atteggiamenti 187 finanziamento 185 legislazione e politica 181 ritorno a scuola 181–3, 186, 198 sostegno sociale 186 suggerimenti 197–8 tipi di scuole 232 transizione dalla scuola 184–5
infortuni legati alle attività ricreative 57–62, 212 infortuni sportivi 57–62 infortuni sul lavoro 57, 58, 212 mielolesione non traumatica 54–57 mielolesione traumatica 47–54 prevenzione primaria/secondaria/terziaria 47 raccomandazioni 62–63 violenza 53, 54, 212
Prevenzione primaria 47 Prevenzione secondaria 47 Prevenzione terziaria 47 Problemi e dubbi circa i dati 33 Progettare tastiere 116 Progettazione progettazione universale 76, 160, 232 tecnologia sanitaria 118
Partecipazione all’occupazione 179, 188–197, 211, 213–4 Partecipazione sportiva 7, 142 Partecizpazione 214 Partner 137–138 Patologie degenerative 22 Patologie secondarie 73–76, 88, 210 definizione 230 prevenibile 100 problemi legati all’occupazione 189–190 rischio di mortalità 25–26
Progettazione stradale 51 Progettazione universale 76, 160, 232 Progetto “Accessible Christchurch” 168 Progetto Brukslinjen 165 Programma Ciclo di vita dell’alloggiamenti 162–163 Programma kaleidoscope 191 Programmi transitori 192–194 Progressiva realizzazione 157, 167, 231 Prospettiva medica della mielolesione 5 Protezione sociale 196–197, 232 Protocolli ICF per la mielolesione 32
[Q] Qatar, incidenza della mielolesione traumatica 18, 19 Qualità del servizio sanitario in funzione della SCI 214 Qualità della vita 3, 87, 139, 141, 211
Perdita di massa ossea 74 Perù, mielolesione correlata alle infezioni 23 Piani assicurativi 115 Piccoli reparti ed équipe per SCI 105 Politiche 4, 101, 166–67, 181–82, 211 Polmonite 26, 75, 89, 211 Polmonite 26, 75, 89, 211 Polonia, edifici pubblici 167 Portogallo, partecipazione all’istruzione 185 Povertà 3, 114, 196 Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) [Elementi preferiti di Reporting per Revisioni sistematiche e Meta-analisi] 219 Prestatori di servizi 215 Prestazioni assistenziali 197–8 Prevenzione della mielolesione cadute 52–53 calamità naturali 62 incidenti stradali 48–51, 212
[R] Raccolta dei dati 34–5, 115, 210 Radici nervose 5 Rafforzamento dei sistemi sanitari 99, 101–119 Rapporto standardizzato di mortalità 14, 25 Reddito 185 Reddito da lavoro 196 Regimi graduali per patentati 51 RegioTaxi KAN 158 Registri abitativi 164 Registri mielolesioni 29,30, 31,34, 232 Registro centrale 30 Regno Unito alloggiamento 158–164 gruppi di auto-aiuto 141 lavoro autonomo 195 legislazione antidiscriminatoria 167
240
Indice
partecipazione all’istruzione 184–5 prevenzione infortuni da armi da fuoco 54 relazioni con i partner 137 tendenze demografiche nella mielolesione traumatica 21 trasporto in taxi 165–6
Relazioni 136–139, 211 Relazioni tra fratelli 138 Religione 136 Repubblica della Corea, mielolesione legata allo sport 21 Repubblica Unita di Tanzania partecipazione all’istruzione 184 trasporti 166
Respirazione 74 Restrizioni alla partecipazione tecnologie assistive 73
Rete Asiatica Lesione Midollare 143 Reti sociali 138, 143, 186 Riabilitazione 71, 77–83, 214 adattamento alla mielolesione 140, 141 assistenza Comunitaria 105–107, 133, 229 bisogni non colmati 99–101 definizione 77,231 formazione professionale 109
Riabilitazione con base comunitaria 106, 162, 229 Riabilitazione professionale 190–2, 194, 232 Ricerca sulla mielolesione 7–8, 215 atteggiamenti, relazioni e adattamento 145 problemi di accessibilità 159, 161 raccolta dei dati 34–35 rafforzamento dei sistemi sanitari 115–116, 117–118 terapie emergenti 115–116
Scuole inclusive 232 Scuole integrate 232 Sensibilizzazione alla disabilità 161, 187 Settore privato 102, 162, 216 Settori 215 Sierra Leone, rischio di mortalità 3,26 Sintomi della mielolesione 5 Sistema dei benefici 197–8 Sistema genito-urinario 73–4, 78, 88 Sistema muscolo-scheletrico 88 Sistemi di controllo ambientale 86 Sistemi di informazione 112, 114, 118 Sistemi di posizionamento 84 Sistemi di raccolta dati sullo stato di salute 112, 114, 118 Sistemi di seduta 84 Sistemi ferroviari 165 Sistemi rapidi di trasporto 165,166 Società, sfida della mielolesione 7 Soddisfazione di vita 139–140 Soluzioni ragionevoli 108, 179, 185, 194, 231 Sostegno 109, 132–136, 145 Sostenere lo sviluppo professionale continuo 109 Sottostima della mielolesione 33 Spagna incidenza della mielolesione non traumatica 22 incidenza della mielolesione traumatica 17–18 limiti di velocità 51 scuole speciali 232 servizi speciali di trasporto 165 spasticità / spasmi 74 supporto specialistico 105
Rick Hansen Spinal Cord Injury Registry [Registro mielolesioni Rick Hansen] 29–31 Ricostruzione chirurgica 82 Rischio di mortalità 3, 15, 23, 25–6, 210 Risorse educative 108, 110 Risorse on-line 107, 187 Risorse umane 108–110 Robotica 115–116 Romania. Servizi per persona in carrozzina 113 Rugby 60–61, 62 RugbySmart 60–61 Rwanda, alloggiamento 164
Spina bifida consulenza professionale 190–191 costi 26 disfunzione famigliare 138 incidenza 24, 225 partecipazione all’istruzione 180–181, 182 passaggio all’età adulta 139 prevenzione 54, 55–56, 212–213, 225–226 problemi legati all’occupazione 189
Sri Lanka alloggiamento 158, 170 riabilitazione ed adattamento alla mielolesione 140–141 sostegno fra pari 144
[S] Salute mentale 82–3, 88, 139 Salute riproduttiva 79–80, 89 Sanità pubblica 209–210 Sciando 61 Scuola da casa 183
Stati Uniti d’America accedendo ai servizi sanitari 104 Assistive Technology Act (1998) [Legge sulle Tecnologie Assistive 1998] 112 costi associati alla SCI 26, 114–5
241
Prospettive Internazionali sulla lesione del midollo spinale
differenze fra i sessi nell’incidenza della mielolesione traumatica 18 disponibilità dei servizi 103 edifici pubblici 166 finanziamento all’istruzione 186 incidenza della mielolesione traumatica 18, 19 interventi di supporto famigliare 134 istruzione universitaria 181 mielolesione legata all’ alcol e droghe 20 mielolesione legata allo sport 20 mielolesione legata alla violenza 20, 21, 53 partecipazione sportiva 144 pianificazione finanziaria per alloggiamenti 164 problemi legati all’occupazione 196–8 razze ed occupazione 189 registro centrale mielolesioni 30 rischio di mortalità 23, 25–6 standard di accessibilità 160 tendenze demografiche nella mielolesione traumatica 21
Svizzera, sistema di indennizzo 115 System of Health Accounts (SHA) [Contabilità del Sistema Sanitario] 32
[T] Tanzania, Repubblica Unita di partecipazione all’istruzione 184–185 trasporti 166
Tassi di letalità 14 Tasso di mortalità 231 Taxi 165–166 Tecnologia 76, 110–112, 116 Tecnologia informatica 83, 85, 106 Tecnologie assistive accettabilità 104 benefici economici 112 bisogni non soddisfatti 99, 100, 104 bisogno di 83 componenti essenziali per la riabilitazione 213 definizione 75, 112, 137, 216, 223 erogazione dei servizi 102, 109, 213 il prestito, il noleggio o il riciclo 115 modelli di produzione e distribuzione 110, 210 paesi a basso reddito 110, 111, 134, 143, 158, 163, 180, 210 paesi a reddito medio posto di lavoro 194 ricerca ed innovazione 110–1 risorse umane 108 risultati 86, 116 risultato funzionale dal processo di cura 82 scuole 181 tipi di 83–4, 111
Spazio fisico Speranza 141 Spinal Cord Injuries Australia (SCIA) 143 “Spinal Essentials” [Concetti fondamentali sul Midollo Spinale] 107 Spiritualità 136 Sport all’aperto 62 Standard di accessibilità 160 Standard di informazione 32 Standardizzazione dei dati 33 Stato civile 137 Stimolatore diaframmatico 74–5 Strategie 101 Sudafrica assistenza formale 134 edifici pubblici 159 mielolesione legata alla violenza 20 partecipazione all’istruzione 181, 184–185 prevenzione infortuni in miniera 58–59 prevenzione infortuni nel rugby 60–61 trasporti 166
Supplementi di acido folico 55–6 Supporto della terapia di gruppo 140–141 Supporto sociale 133, 186, 190 Svezia differenze fra i sessi nell’incidenza della mielolesione traumatica 18–19 edilizia sociale 161–164 mielolesione legata alle infezioni 22–23 progetto trasporti Brukslinjen 165 programmi per l’assistenza personale 136 relazioni con i partner 137 reti sociali 164
Tecnologie sanitarie 110–12, 118 Tele-lavoro 195 Tele-medicina 105–106 Tele-riabilitazione 105–106 Tendenze demografiche 21 Tentato suicidio 20–21, 210 Teoria delle valutazioni cognitive 140 Terapia con cellule staminali 117 Terapia di coppia 138 Terapia in fase acuta 76–7, 213, 214 Terapia per la mielolesione 115–116 Terremoti 62 Tetraplegia 5 costi 26 effetti sulla salute 72 proiezione dei risultati di funzionalità 80–81 rischio di mortalità 25
Thailandia, edifici pubblici 159 Tosse 75
242
Indice
Tracheostomia 74–75 Tram 165 “Trappola dei sussidi” 197 Trasferimento degli aiuti 84–86 Trasporto in auto 164, 170 Trasporti privati 158, 166 Trasporti pubblici 158, 164–166, 170 Trattamento chirurgico 77–78 Trattamento conservativo 77 Trombosi venosa profonda 73 Tubercolosi 20–21, 54–55, 210, 212 Tuffarsi 59, 62 Tumori 20–22 Turchia edifici pubblici 159 mielolesione legata alla violenza 20
Ulcere da pressione 26, 75–76, 231
[V] “Varsavia senza barriere” 167 Ventilazione meccanica 75 Verifiche sul mantenimento dell’accessibilità 169 Viaggiare in moto 166 Viet Nam, piccoli reparti per SCI 104 Vigilanza 109 Visitabilità 164 Vivere Indipendente 7 Volando 106
[W] World report on disability (OMS)[Rapporto Mondiale sulla Disabilità] 99, 133
Tutoraggio e sostegno tra pari 83, 107, 110, 138, 142, 183, 191
[Z] Zambia, tecnologie assistive 104 Zimbabwe edifici pubblici 166 problemi di reddito 196 problemi legati all’occupazione 189 tecnologie assistive 104
[U] Uganda costi associati alla SCI 114 finanziamenti per l’istruzione 185–186 riabilitazione comunitaria 106–107 standard di accessibilità 160–161
indice analitico italiano a cura di Andrea Sorbino, Cinzia Bonanni e Carmelo Pirri
243
“La lesione midollare non deve essere una sentenza di morte, ma sono necessari interventi e caci di emergenza e servizi riabilitativi appropriati, i quali, attualmente, non sono disponibili per la maggior parte delle persone nel mondo. Una volta che avremo assicurato la sopravvivenza, il prossimo passo è quello di promuovere i diritti umani delle persone con la lesione midollare, insieme alle altre persone con disabilità. Tutto ciò si riferisce tanto alla consapevolezza quanto alle risorse. Accolgo con favore questo importante rapporto perché contribuirà ad una comprensione maggiore e pertanto ad una prassi migliore”. SHUAIB CHALKEN, RELATORE SPECIALE SULLA DISABILITÀ DELLE NAZIONI UNITE
“La spina bi da non costituisce un ostacolo ad una vita piena ed utile. Sono stata campionessa paralimpica, moglie, madre, presentatrice radiotelevisiva e membro della camera alta nel Parlamento britannico. Ci sono volute determinazione e dedizione, ma non sono certamente sovrumana. Tutto questo è stato possibile solamente perché potevo contare sulla buona assistenza sanitaria, l’istruzione inclusiva, le carrozzine appropriate, un ambiente accessibile e i sussidi sociali adeguati. Mi auguro che in ogni parte del mondo i responsabili delle politiche leggeranno questo rapporto, capiranno come a rontare la s da della lesione midollare ed intraprenderanno le azioni necessarie”. TANNI-GREY-THOMPSON, VINCITRICE DI MEDAGLIA PARALIMPICA E MEMBRO DELLA CAMERA DEI LORD DEL REGNO UNITO
“La disabilità non è incapacità, ma fa parte della diversità meravigliosa che ci circonda. Dobbiamo comprendere che le persone con disabilità non vogliono la carità ma le opportunità. La carità implica la presenza di un inferiore e di un superiore il quale dà ‘generosamente’ ciò di cui non ha bisogno, mentre la solidarietà si dà tra eguali, in modo orizzontale tra esseri umani che sono diversi ma uguali nei loro diritti. Dobbiamo eliminare le barriere, costruire un percorso verso la libertà: la libertà di essere diversi. Questa è la vera inclusione”. LENIN MORENO, GIÀ VICE PRESIDENTE DELLA REPUBBLICA DELL’ECUADOR
. , , . , . ,
.
척수 손상의 국제적 관점
. .
www.kscia.org
. , , . , , , &
, , , . , . ,
척수 손상의 국제적 관점
,
.
,
, . , . ,
. (Charity)
(Solidarity) . . , ,
비매품/무료
07236
22, 6
4 (
) ISBN 979-11-951734-4-0
Tel. 02)786-8483 Fax. 02)786-8473
www.kscia.org
척수 손상의 국제적 관점
Published by the World Health Organization in 2013 International perspectives on spinal cord injury
ⓒ World Health Organization 2013 세계보건기구는 한국척수장애인협회에 한국어판 보고서의 번역과 출판에 관한 권리를 위임하였으며, 한국어판 보고서의 품질과 완성도의 책임은 전적으로 한국척수장애인협회에 있습니다. 영어판과 한국어판 보고서의 내용 불일치가 있는 경우에 영어판 보고서가 구속력이 있는 신뢰할 수 있는 원본입니다. 이 책의 한국어판 저작권은 저작권자와의 계약으로 사단법인 한국척수장애인협회에 있습니다. 저작권법에 의해 한국 내에서 보호를 받는 저작물이므로 저작권자의 사전 동의 없는 전제 및 복제를 금합니다.
척수손상의 국제적 관점 ⓒ한국척수장애인협회 2017 2017년 11월 20일 초판 1쇄 발행
저 번 감 기 편
자 역 수 획 집
세계보건기구 김병수 구근회, 김동구, 이보람 사단법인 한국척수장애인협회 박수연 구근회 ㈔한국척수장애인협회 서울 영등포구 의사당대로 22 이룸센터 604호 Tel. 02-786-8483, Fax. 02-786-8473, E-mail. kscia@kscia.org
디자인 펴낸이 펴낸 곳 등 록
IS B N 979-11-951734-4-0
CONTENTS
척수손상에 대한 이해 서문 감사의 말씀 도움 주신 분들 ⅷ ⅹ ⅺ 보고서의 목적과 범위 척수손상이란? • 의학적 측면
1 01 04 05 05 06
• 척수손상의 역사적 측면
• 사회와 건강 시스템에 있어 07 척수손상이라는 과제
척수손상의 경험을 이해하기 위한 도구 개요
08 09
About This Book iv
척수손상의 국제적 상황
2 3 4 13 척수손상의 예방 55 57 58 61 62
보건 의료와 재활의 요구 83 척수손상이 건강에 미치는 영향 86 • 잠재적 합병증 86
척수손상에 대해 우리가 알고 있는 것은 무엇인가? 16 • 척수손상의 유병률 • 척수손상의 발생률 • 외상성 척수손상 • 비외상성 척수손상 • 사망률과 기대 수명 • 척수손상의 비용 17 19 20 26 28 31
외상성 척수손상의 원인 • 교통사고 • 추락 • 폭력
보건 의료적 요구 • 입원 전 관리 및 급성기 치료 • 급성기 이후 의료 치료와 재활 • 보조 기기 기술 • 건강 유지 관리
91 91 92 97 101
비외상성 척수손상의 원인 64 척수손상과 관련된 활동, 장소, 상황 • 작업장(직장)에서의 손상
67 67
척수손상에 대한 데이터와 근거 • 데이터 소스(출처) • 정보 기준
34 35 36
• 스포츠와 레크리에이션으로 인한 손상 68 • 자연재해 71
결론과 제안
104
결론과 제안
72
데이터와 관련된 문제점들과 고려사항 • 데이터의 정의와 표준화 • 과소보고(Underreporting) • 기타 이슈
37 37 38 38
결론과 제안
39
v
의료 시스템 강화 미충족 요구 • 보건 의료 • 재활
5 6 7 117 119 119 120
태도, 관계, 적응 태도
153
156 158
척수손상과 할 수 있게 하는 환경
191
• 광범위한 지역 사회의 태도 156 • 의료 전문가의 태도
척수장애인에 대한 장애물 193 • 주택 • 교통 • 공공건물 193 194 195
의료 시스템 강화 • 리더십과 거버넌스 • 서비스 전달 • 인적 자원 • 의료 기술 • 의료 정보 시스템 • 비용 마련과 적정한 비용 • 연구
121 121 123 129 132 134 136 138
보조와 지지 • 비공식적 돌봄 • 공식적인 보조 서비스 (Formal Care) • 활동보조인
159 159 161 162
장애물에 대한 대처
196
• 크로스커팅(cross-cutting) 대처 196 • 주택 • 교통 • 공공건물 198 201 204
가족 관계 • 파트너 • 부모와 자녀와의 관계
164 164 166
결론과 제안
140
척수손상에 대한 적응 결론과 제안
168 174
결론과 제안
207
vi
교육과 고용
8 219 223 224 224 227 227 228 228
제안: 미래를 향하여 중요한 결론 1. 척수손상은 공공 건강의 중대한 문제이다.
257 259 259
9 다음 단계 결론 264 266 부록 A 부록 B 부록 C 부록 D 용어해설 269 274 275 277 279
척수손상과 교육의 참여 222 교육과 관련된 장해 요인에 대한 대처 • 법률과 정책 • 이분 척추증 아동 지원
2. 척수손상은 개인과 사회에 상당한 영향을 미친다. 260 3. 서비스와 환경에 대한 장애물은 참여를 억제하고 삶의 질을 저하시킨다. 261 4. 척수손상은 예방 가능하다. 261 5. 척수손상 이후에도 생존 가능하다. 262
• 손상 이후 학교로 돌아가기 225 • 상위 교육 기관으로의 진학 226 • 물리적 장애물 제거 • 정당한 편의 제공 • 교육과 편의 시설에 대한 펀딩 • 사회적 지원
• 태도적 장애물에 대처하는 방법 229
6. 척수손상 이후에도 좋은 건강 상태를 유지하고 사회적 참여를 할 수 있다. 262
제안
263
척수손상과 고용에 참여 231 고용과 관련된 장애물에 대처하는 방법 232 • 직업훈련과 취업 지원 • 작업장 편의시설 보장 • 자영업 • 사회적 보호 233 • 척수손상에 대한 오해 극복 237 238 239 240
1. 척수손상에 관한 보건 분야 대응 능력 향상 263 2. 척수장애인과 가족의 역량 강화 3. 척수장애인에 대한 부정적인 태도에 적극적으로 대응 4. 건물, 교통, 정보 접근성 보장 5. 고용과 자영업 지원 6. 적절한 연구와 데이터 수집 장려 263
263 263 264 264
결론과 제안
242
vii
서 문 Preface
장애인에 대한 국제적인 상징은 휠체어이고 장애인에 대한 고정관념은 하지마비의 젊은 청년이다. 이런 이미지가 매우 친숙한 반면에, 동시에 우리는 이런 이미지가 전세계의 다양한 유형의 장애인을 정확히 그리지 못한다는 점도 알고 있다. 장애로 인해 전 세계 사람들의 15%가 삶에 영향을 받고 있지만, 이들 중 척수장애인이 수는 0.1% 미만이다. 그러나 척수손상은 두 가지 이유에서 특히나 절망적이다. 첫 번째로, 척수손상은 갑작스럽게 발생한다는 점이다. 밤 늦은 시간에 운전자가 피곤한 상태에서 음주 운전을 하다가 도로를 벗어나게 되고 이로 인해 차량이 전복되어 사지마비가 되는 경우. 또한 십대 청소년이 수영장에서 다이빙하다 목이 부러지는 경우. 근로자가 비계에서 추락해 하지마비가 되는 경우. 지진이 발생해 추락하는 물체에 등을 부상 당하는 경우. 중년 여성이 종양에 의한 압박으로 마비가 되는 경우. 이런 모든 예에서 볼 수 있듯이, 누군가는 자신의 인생에 있어 가장 황금 같은 시기에 갑자기 장애인이 되는 경우가 있다. 우리들 중 어느 누구도 이런 위험에서 자유로울 수는 없다. 두 번째로, 척수손상의 결과는 일반적으로 조기 사망이나 혹은 잘해봐야 사회적 배제로 이어진다는 점이다. 외상 관리 시스템이 적절하게 마련되어 있지 않으며, 많은 경우에, 양질의 재활이나 보조기기에 접근하는 것이 쉽지 않은 상황이다. 지속적인 보건 의료 관리가 부족하여, 척수장애인들은 수년 이내에 요로감염 이나 욕창으로 사망할 가능성이 높다. 심지어 척수장애인이 운이 좋아서 자신이 원하는 충분한 의료와 재활 치료를 받았다고 할지라도, 이들이 정말로 사회 속에서 자립할 수 있고 가정과 사회에 기여할 수 있는 교육과 취업에 대한 접근에 있어 제약을 받는 경향이 많이 있다. 이러한 끔찍한 결과를 피할 수 없는 것은 아니다. 이 보고서는 척수손상은 예방할 수 있으며, 척수손상 이후에도 생존할 수 있고, 척수손상이 양질의 삶이나 사회에 대한 완전한 기여를 가로 막을 수도 없다는 메시지를 제시하고 있다. 이 보고서는 척수손상의 발생, 특히 외상성 원인의 척수손상 발생을 줄이기 위한 전략과 관련하여 활용할 수 있는 최선의 과학적 증거를 담고 있다. 또한, 이 보고서는 의료 시스템을 통해
viii
척수손상을 당한 사람들의 효율적인 대처 방안을 제시 하고 있다. 마지막으로 이 보고서는 척수손상 이후 개인의 적응과 관계 맺음을 지원하는 방법, 환경적인 장애물을 제거하는 방법, 그리고 척수장애인이 학교, 대학, 직장으로 다시 돌아가는 방법을 다루고 있다. 우리는 척수손상을 삶의 위협에서 기회로 바꿀 수 있다. 이를 위해 두 가지 차원의 내용이 있다. 첫째, 척수손상은 거의 모든 측면에서 의료 시스템의 과제와 관련이 있다는 점이다. 따라서 척수손상 대처를 통해 이 과제에 효과적으로 대응할 수 있는 의료 시스템을 마련한다는 것은 다른 많은 유형의 질환과 질병에 보다 잘 대응할 수 있는 의료 시스템을 구축할 수 있다는 의미이다. 둘째, 특히 척수장애인을 잘 수용할 있는 세상은 분명히 일반적으로 장애인들을 보다 잘 통합할 수 있는 세상이라는 점이다. 접근성의 개선과 보조기기의 광범위한 활용은 전세계의 수백만 장애인과 노인들에게 도움을 줄 것이다. 마지막으로, 물론 ‘기회’라는 단어는 척수장애인들이 그토록 열망하는 더 나은 삶과 사회에 대한 생산적 기여라는 신호를 보여주고 있으며, 그리고 만약 우리가 정치적인 의지와 조직적인 노력만 있으면 척수 장애인들이 원하는 더 나은 삶과 사회에 대한 생산적 기여를 이룰 수 있도록 도와 줄 수 있다. 과거에 ‘세계 장애 보고서(World report on disability)’와 마찬가지로, ‘척수손상의 국제적 관점(International Perspective on Spinal Cord Injury)’이라는 이 보고서는 삶을 변화시키고 새로운 문을 열 수 있는 잠재력을 가지고 있다. 세계의 정책 입안자들이 이 보고서의 내용에 주의를 기울여 줄 것을 촉구한다.
마거릿 챈 WHO 사무총장
ix
감사의 글 Acknowledgements 세계보건기구(World Health Organization: WHO)와 국제척수손상학회(International Spinal Cord Society: ISCoS)는 이 보고서의 완성을 위해 전 세계 30여개 국에서 도움을 주신 200명 이상의 분(편집자, 지역 협의체 참여자, 동료 평가자)들께 진심으로 감사의 말씀을 드립니다. 또한 지원과 성원을 보내주신 보고서 자문단, WHO 스태프, ISCoS 스태프, 스위스 패러플래직 연구소(Swiss Paraplegic Research: SPF)에도 감사 인사 드립니다. 이분들의 헌신과 전문성이 없었다면, 이 보고서는 완성되지 못했을 것입니다. 이 보고서는 또한 다른 많은 분들의 도움이 있었습니다. 특히, 주요 보고서의 최종본을 편집해주신 David Bramley와 Philip Jenkins 그리고 시각장애인들이 이 보고서의 도표나 이미지의 내용을 스크린 리더로 볼 수 있도록 대안 문서를 작업해 주신 Angela Burton에게도 감사 인사를 드립니다. 또한 다음의 분들께도 감사 말씀을 드립니다. 이 보고서의 기술 지원을 해주신 Natalie Jessup, Sue Lukersmith, Margie Peden. 데이터의 분석과 해석에 도움을 주신 Martin Brinkhof, Somnath Chatterji, Colin Mathers. 비 영어권 자료를 번역해 주신 Nicole Andres, Carolina Ballert, Pavel Ptyushkin, Hua Cong Wen. 보고서의 교정을 맡아주신 James Rainbird. 보고서의 색인을 담당하신 Christine Boylan. 그래픽 디자인을 담당하신 Susan Hobbs와 Adele Jackson. 마지막으로 행정적 지원을 해주신 Rachel McLeod-Mackenzie과 접근 가능한 포맷으로 보고서를 만들어 주신 Melanie Lauckner 에게도 감사 드립니다. 세계보건기구(WHO)와 국제척수손상학회(ISCoS)는 특히 보고서의 발행 코디네이션을 지원해 주신 스위스 패러플래직 연구소(Swiss Paraplegic Research: SPF)에 감사 드리고, 보고서의 발행, 번역, 출판에 재정 지원을 해주신 스위스 패러플래직 협회(Swiss Paraplegics Association: SPV), SPF, 스위스 패러플래직 재단(Swiss Paraplegic Foundation: SPS)에도 감사 말씀 드립니다.
표지 디자인 (Brian Kellett) 2003년 Brian Kellett은 산악 자전거 사고로 인한 흉수 4번 손상으로 완전 하지마비가 되었다. 예술을 통해, 그는 자신의 손상을 받아들이고 적응할 수 있었다. 자신이 다녔던 대학의 외래 강사로서 그리고 그 의 작품 속에서, Brian Kellett는 장애가 타인을 반영하고 함께 공유 할 수 있는 독특한 내러티브를 가져 다 준 점에 대해 감사하고 있다. 프리랜서 사진작가와 디자이너로 일을 하면서, 또한 오하이오 주립 대학 에서 예술 교육 박사 과정을 이수하며 자신의 학문 연구도 계속하고 있다. 그의 목적은 장애인 퇴역 군인 들과 함께 일하며 이들에게 치료 목적의 사진을 가르쳐 줄 수 있는 비영리 단체를 만드는 것이다.
x
도움 주신 분들 Contributors 편집 위원회 Jerome Bickenbach, Cathy Bodine, Douglas Brown, Anthony Burns, Robert Campbell, Diana Cardenas, Susan Charlifue, Yuying Chen, David Gray, Leonard Li, Alana Officer, Marcel Post, Tom Shakespeare, Anne Sinnott, Per von Groote, Xianghu Xiong. 수석 편집위원 Jerome Bickenbach, Alana Officer, Tom Shakespeare, Per von Groote. 기술 편집위원 David Bramley, Philip Jenkins. 자문 위원회 Frank Abel, Michael Baumberger, Pietro Barbieri, Fin Biering-Sørensen, Anne Carswell, Fred Cowell, Joel DeLisa, Wagih El Masri(y), Stella Engel, Edelle Field- Fote, Jan Geertzen, Anne Hawker, Joan Headley, Jane Horsewell, Daniel Joggi, Apichana Kovindha, Etienne Krug, Gerold Stucki, Maluta Tshivhase, Isabelle Urseau, Jean-Jacques Wyndaele. 각 장에 도움 주신 분들 1장: 척수손상에 대한 이해 도움 주신 분들: Jerome Bickenbach, Fin Biering-Sørensen, Joanna Knott, Tom Shakespeare, Gerold Stucki, George Tharion, Joy Wee.
박스: Jerome Bickenbach (1.1). 2장: 척수손상의 국제적 상황 도움 주신 분들: Jerome Bickenbach, Inga Boldt, Martin Brinkhof, Jonviea Chamberlain, Raymond Cripps, Michael Fitzharris, Bonne Lee, Ruth Marshall, Sonja Meier, Michal Neukamp, Peter New, Richard Nicol, Alana Officer, Brittany Perez, Per von Groote, Peter Wing.
박스: Martin Brinkhof, Jonviea Chamberlain, Sonja Meier (2.1), Jerome Bickenbach (2.2), Per von Groote (2.3). 3장: 척수손상의 예방 도움 주신 분들: Douglas Brown, Robert Campbell, George Coetzee, Michael Fitzharris, Fazlul Hoque, Shinsuke Katoh, Olive Kobusingye, Jianan Li, Ruth Marshall, Chris Mikton, Peter New, Alana Officer, Avi Ohry, Ari Seirlis, Per von Groote, Dajue Wang, Eric Weerts, Joy Wee, Gabi Zeilig
박스: Michael Fitzharris (3.1), Fazlul Hoque (3.2), Martin Brinkhof, Jonviea Chamberlain, Sonja Meier (3.3), George Coetzee, Alana Officer (3.4), Richard Nicol (3.5), Balraj Singhal, Rick Acland, David Walton, Wayne Viljoen, Clint Readhead (3.6).
xi
4장: 보건 의료와 재활의 요구 도움 주신 분들: Cathy Bodine, BrianBurne, Anthony Burns, DianaCardenas, Catharine Craven, Lisa Harvey, Graham Inglis, Mark Jensen, Natalie Jessup, Paul Kennedy, Andrei Krassioukov, Richard Levi, Jianjun Li, Sue Lukersmith, Ruth Marshall, James Middleton, Carrie Morris, Peter New, Alana Officer, Govert Snoek, Xianghu Xiong.
박스: Natalie Jessup (4.1). 5장: 의료 시스템 강화 도움 주신 분들: Cathy Bodine, Yuying Chen, Harvinder Chhabra, William Donovan, Julia D’Andrea Greve, Natalie Jessup, Carlotte Kiekens, Suzy Kim, Jiri Kriz, Jianan Li, Leonard Li, Sue Lukersmith, Ruth Marshall, Alana Officer, Sheila Purves, Haiyan Qu, Lawrence Vogel, Per von Groote, William Waring, Jacqueline Webel, Eric Weerts.
박스: James Gosney, Xia Zhang (5.1), Ruth Marshall (5.2), Anca Beudean (5.3), James Guest (5.4). 6장: 태도, 관계, 적응 도움 주신 분들: Caroline Anderson, Susan Charlifue, Jessica Dashner, Stanley Ducharme, Martin Forchheimer, David Gray, Richard Holmes, Jane Horsewell, Margareta Kreuter, Mary-Jane Mulcahey, Richard Nicol, Joanne Nunnerley, Marcel Post, Shivjeet Raghaw, Tom Shakespeare, Cyril Siriwardane, Tomasz Tasiemski, Lawrence Vogel.
박스: Carwyn Hill (6.1), Jane Horsewell, Per von Groote (6.2), Cyril Siriwardane (6.3). 7장: 척수손상과 할 수 있게 하는 환경 도움 주신 분들: Jerome Bickenbach, Meghan Gottlieb, David Gray, Sue Lukersmith, Jan Reinhardt, Tom Shakespeare, Anne Sinnott, Susan Stark, Per von Groote.
박스: Samantha Whybrow (7.1), Jerome Bickenbach (7.2). 8장: 교육과 고용 도움 주신 분들: Caroline Anderson, Elena Ballantyne, Jerome Bickenbach, Kathryn Boschen, Normand Boucher, David Gray, Erin Kelly, Sara Klaas, Lindsey Miller, Kerri Morgan, Carrie Morris, Marcel Post, Tom Shakespeare, Lawrence Vogel, Per von Groote, Kathy Zebracki.
박스: Jerome Bickenbach (8.1), Marcel Post (8.2), Jerome Bickenbach (8.3). 9장: 제안: 미래를 향하여 도움 주신 분들: Alana Officer, Tom Shakespeare, Per von Groote. 부록 도움 주신 분들: Inga Boldt, Martin Brinkhof, Jonviea Chamberlain, Sonja Meier, Michal Neukamp, Per von Groote.
xii
자기 경험을 제공해 주신 분들 이 보고서는 장애인 당사자의 경험 이야기(내러티브)를 포함하고 있다. 이 내러티브 자료를 수집하는 데 도움을 주신 Mónica Agotegaray, David Gray, Julia D’Andrea Greve, Maher Saad Al Jadid, Norah Keitany, Apichana Kovindha, Sue Lukersmith, Ruth Marshall, Alexandra Rauch, Carolina Schiappacasse, Anne Sinnott, Kelly Tikao, Xia Zhang에게 감사의 인사를 드린다. 많은 분들이 이야기를 들려 주셨지만 이 보고서에 다 담지는 못했다. 신상정보 보호를 위해서 경험을 전해주신 분들의 성과 국적만을 기재하였다. 동료 검토자 Fin Biering-Sørensen, Johan Borg, Martin Brinkhof, Douglas Brown, Thomas Bryce, Paola Bucciarelli, Marcel Dijkers, Pat Dorsett, Inge Eriks-Hoogland, Reuben Escorpizo, Szilvia Geyh, Ellen Hagen, Claes Hultling, Rebecca Ivers, Desleigh de Jonge, Chapal Khasnabis, Ingeborg Lidal, Anna Lindström, Rod McClure, Stephen Muldoon, Rachel Müller, Claudio Peter, Ranjeet Singh, Alexandra Rauch, Jan Reinhardt, Marcalee Sipski Alexander, John Stone, Thomas Stripling, Denise Tate, Armando Vasquez, Eric Weerts, Gale Whiteneck. 기타 도움 주신 분들 지역 컨설턴트 Sergio Aito, Fin Biering-Sørensen, Susan Charlifue, Yuying Chen, Harvinder Chhabra, Wagih ElMasri(y), Stella Engel, Michael Fitzharris, Harish Goyal, Sonja de Groot, Lisa Harvey, Nazirah Hasnan, Jane Horsewell, Jianan Li, Sue Lukersmith, Ketna Mehta, Stephen Muldoon, Joanne Nunnerley, Marcel Post, Shivjeet Raghaw, Cyril Siriwardane, Tomasz Tasiemski, Esha Thapa, Sara Varughese, Dajue Wang, Eric Weerts, Lucas van der Woude.
이 보고서의 작성에 관련된 어떤 전문가도 이해관계의 대립됨을 선언하지 않았다.
xiii
Understanding spinal cord injury
1. 척수손상에 대한 이해
“척수손상 이전에, 나는 매우 독립적인 사람이었다. 많은 친구들과 함께 사회적 삶을 즐기고, 열심히 일했으며, 여행도 많이 다니고, 전공이었던 법률 공부도 마무리 짓고, 데이트도 하는 등… 내 인생은 살아야 할 욕구가 충만한 전형적인 젊은 여성의 삶이었다. 척수손상 이후에 모든 것은 변했으며, 독립을 하고, 대학을 졸업하고, 가정을 꾸리는 것과 같은 꿈을 이루는 것이 힘들어졌다.” (클라우디아, 브라질)
“어머니가 나를 팔에 안고 아버지가 운전하는 3륜 오토바이를 타고 가는 도중에, 오토바이가 자동차와 충돌했다. 부모님은 모두 돌아가셨다. 나는 살아남았으나, 2살에 하지마비 장애인이 되었다. 방콕에 빈민가에 사시던 할아버지가 나를 돌봐 주셨다. 이후에 나는 장애 아동을 위한 학교에 입학했다. 지금은 11살이고 학교를 그만두었다. 내 머리는 좋지 않은 편이다. 기억력이 좋지는 않지만, 어려움 없이 휠체어를 탈 수는 있다. 운이 좋게도, 나는 사지 마비 사업가인 B 씨와 그의 아내를 만났고 그들이 나를 돌봐 주었으며, 지금은 함께 살고 있다. 이 부부는 나에게 스포츠 휠체어를 마련해 주었고, 국가 대표 휠체어 스포츠 선수가 되라며 계획을 세워 주었다. 그리고 나는 그 꿈을 이룰 수 있다고 생각한다.” (익명, 태국)
“내가 재활을 마치고 돌아왔을 때, 지역 사람들이 공항에서 환영해 주었고 휠체어에서 생활하는 다른 삶을 접하게 되었다. 나는 과거와 같은 삶을 살 수 없을 것이라고 생각했다. 당황스러웠고 정말로 친구들을 보고 싶지 않았다. 지금은 달라졌지만, 당시에는 축구를 할 수도, 달릴 수도, 캠핑을 갈 수도, 마을의 강으로 자전거를 타고 갈 수도 없었다. 내가 원했던 것은 그저 집 안에서 숨어 지내는 것이었다. 처음에 만났던 지역 사회 작업 치료사가 나를 집 밖으로 나오도록 설득하는 데 약 6개월이 걸렸다. 내가 지역 사회로 돌아오기 전에, 그녀는 이미 학교에 경사로를 설치해 두었고, 화장실도 장애인용으로 개조해 두었다. 아주 서서히 나는 자신감을 회복하기 시작했다. 사고 이전에 농구는 내가 가장 좋아하는 운동이었기에, 재활 동안 휠체어 농구를 배웠다. 몇몇 친구들에게 휠체어에서 트릭을 쓰는 방법을 보여 주었다. 선생님은 내가 마을 주변을 거닐며 식물을 찾아보는 마을 탐구 프로그램뿐만 아니라 학교에서 케언스로 가는 수학여행 등 학교와 마을 활동에 참여하도록 격려해 주셨다. 선생님, 친구들, 가족의 지원이 나에게 힘을 주었다.” (알프레드, 호주)
1 척수손상에 대한 이해 척수손상(Spinal Cord Injury: SCI)은 의학적으로 복잡할 뿐 아니라 삶을 어렵게 만드는 요소이다. 역사 적으로도 척수손상은 상당히 높은 사망률과 관련되어 왔다. 그러나 오늘날, 고소득 국가에서는 척수손상이 가치 있고 생산적인 삶의 끝이 아니라, 성공적으로 극복할 수 있는 개인적이고 사회적인 도전 과제로 인식 되고 있다. 이러한 변화는 척수장애인이 손상 이후 생존하여 풍요로운 삶을 살아갈 수 있는 보다 향상된 의료적 지원을 반영하고 있다. 예를 들어, 현재 척수장애인은 광범위한 사회적 서비스와 접근 가능한 환경이 결합한 향상된 응급 대응 조치, 효율적인 건강 관리와 재활, 인공호흡 장치와 알맞은 휠체어 같은 기술의 혜택을 누리며 살 수 있다. 그리하여 삶을 더욱 연장할 수 있게 되었고, 기능적 측면은 더욱 극대화되었다. 많은 척수장애인이 현재는 단순히 삶의 기간을 연장하는 것이 아니라, 이전 척수장애인 세대와는 달리 보다 풍부하고 생산적인 삶을 살기를 기대하고 있다. 하지만 저소득 국가에서의 상황은 매우 다르다. 외상성 척수손상은 종종 삶의 중단을 의미한다. 시에라리온 같은 국가에서는 대부분의 척수장애인이 손상 이후 수년 안에 사망한다. ❶ 저소득 국가와 많은 중소득 국가에서는, 휠체어와 같은 양질의 보조 기기의 이용 가능성이 매우 제한적이며, 의료와 재활 서비스도 최소한의 수준에 머물러 있고, 개인적, 사회적 삶의 모든 영역에 참여할 수 있는 기회가 상당히 한정적이다. ❷ 대부분의 개발 도상국 상황은 유럽과 북미의 1940년대 상황과 비슷한 편이다. ❸ 이처럼 빈곤은 척수 장애인의 삶을 더욱 어렵게 만든다. ❹ 그러나 고소득 국가에서 비교적 짧은 시간에 이루어졌던 생존과 참여의 놀라운 변화는 다른 지역에도 긍정적 변화를 가져올 수 있다는 희망을 불러일으킨다. 적절한 정책 대응을 통해, 척수장애인이 전 세계 어느 곳에서든지 삶을 살고, 성공하고, 사회에 기여할 가능성이 있다. 어느 누구도 혼자서는 살 수 없으며, 따라서 척수장애인이 일상적으로 경험하는 전반적인 물리적, 사회적, 태도적 환경에서 그들의 삶이 어떤지를 이해하는 것이 중요하다. 척수장애인의 양질의 삶은 다음과 같은 요소에 상당히 좌우된다. 예를 들어, 적절한 자원과 서비스가 이용 가능한지, 지원해 줄 수 있는 업계와 지역 사회가 연계될 수 있는 환경이 마련되어 있는지, 혹은 이 환경이 능동적인 서비스와 자원 제공을 막는 것을 포함해 척수장애인이 차별적인 태도와 기타 장벽에 부딪힐 수 있는 장애물로 작용 하는지에 따라 달라진다. 척수손상은 개인적, 사회적으로 전반적인 영향을 미치게 된다. 그러므로 개인, 그리고 크게는 사회에 미치는 척수손상의 전반적인 영향은 다음과 같은 요인의 영향을 받게 된다.
1. 척수손상에 대한 이해 3
• 손상 발생 시 연령(생산 활동 연령의 초반기인지 혹은 후반기인지) • 손상의 정도 • 자원과 서비스의 가용성과 시기 • 사람이 거주하는 환경 - 물리적, 사회적, 환경적, 태도적 환경
지역 사회로의 완전한 복귀를 위한 신속하고 효과적인 의료적 대응과 지속적인 재활을 보장하는 정책 변화는 상당히 비용 효율적이며 사회적으로도 이롭다. 신속하게 응급 및 의료 치료를 제공하는 비용은 이런 치료로 직접적으로 생명을 구할 수 있다는 점에서 상쇄될 수 있다. 척수손상이 아직 생산 활동을 많이 할 수 있는 젊은 사람들에게 영향을 미친다는 점에서, 재활에 필요한 자원 배분의 실패는 상당한 사회적 손실로 이어질 수 있다. 그러므로 척수손상에 대한 의료, 재활 지출은 합리적인 비용 지출이라 할 수 있다. 더욱 중요한 것은, 생명을 구하고 삶의 질을 촉진하며 생산성을 유지하는 것이 사회적·인본 적인 책무라는 점이다. 이 보고서는 여러 논거에서 보여지듯이 척수장애인의 건강과 삶을 상당히 향상 시킬 수 있는 정책과 실천의 변화를 강조하고 있다. 척수장애인의 삶을 개선시키기 위한 방안은 척수손상 예방을 위한 조치와 병행되어야만 한다 . 이 보고서는 높은 유병률을 보이는 외상성 척수손상의 많은 원인 - 교통사고, 추락, 스포츠 레저 활동 으로 인한 부상, 폭력 등 - 은 이해 및 예측할 수 있고, 상당 부분 예방할 수 있다는 점을 제시하고 있다.
보고서의 목적과 범위
‘척수손상의 국제적 관점(International Perspectives on Spinal Cord Injury)’의 목표는 다음과 같다. • 척수손상에 대한 정보들, 특히 역학, 서비스, 관련된 대안과 정책들, 그리고 삶의 전 영역과 전 세계에 걸친 척수 장애인의 삶의 정보를 수집하고 요약하는 것. • 이 근거를 바탕으로 유엔 장애인 권리 협약(CRPD) (5)에 명시된 참여와 통합을 위한 기대에 부합하는 행동을 위한 제안을 하는 것.
이 보고서는 척수손상의 규모와 경향을 문서화하고, 예방 전략을 탐구하고, 전 세계 척수장애인의 상황을 분석했다. 그리고 이를 통해, 척수손상 장애인의 삶의 경험을 향상시켜 줄 수 있는 다양한 경제적 배경 에서의 해결책 사례를 제시하고 있다. 이러한 해결책은 통합 보건 및 재활 서비스로부터 교육과 고용에 대한 접근성 개선, 가족과 지역 사회 삶을 위한 지원 증대 등 다양한 범위의 내용을 담고 있다. 첫 번째 장은 비전문가를 위해 척수손상에 대한 의료적 측면의 짧은 소개와 척수손상의 역사를 포함한 척수손상에 대한 일반적인 정보를 제공할 것이다. 또한 이 장에는 척수장애인의 삶의 경험을 향상시키기 위해 필요한 시스템과 서비스, 그리고 건강 상태나 동반된 장애를 가진 사람들의 요구에 대해 적절한 사회적 대응을 폭넓게 평가하는 데 도움을 줄 방법에 대한 논의를 포함하고 있다.
4 척수 손상의 국제적 관점
척수손상이란?
▶ 의학적 측면 비록 척수손상 후의 삶이 환경적 요인에 상당 부분 좌우된다 하더라도, 기본적인 해부학과 생리학을 이해하는 것은 중요하다. 척수는 척주 안에 위치해 있다. (그림 1.1 참조) 척수는 두뇌로부터 아래로 뻗어 나가 요수 1−2번 부위를 지나 척수 원추(conus medullaris)까지 이어진다. 척수의 끝단은 척주관을 통해 ‘말의 꼬리’라 불리는 말총(cauda equine)으로 이어진다. 척수는 각각의 신경근과 상응하는 신경학적 부분의 부위를 가지고 있다. 31쌍의 신경근과 8쌍의 경수, 12쌍의 흉수, 5쌍의 요수, 5쌍의 천수, 1쌍의 미수가 있다. 척주와 척수 간의 길이 차이로 인해 신경학적 부위가 반드시 척추 단위와 일치하는 것은 아니다.
신경 두개저골 C1 C2 C3 C4 C5 C6 C7 C8 T1 T2 T3 T4 T5 T6 T7 T8 T9 T10 T11 T12
기능 C1–C4 호흡 머리&목 움직임
경수신경 C4–T1 심장박동 조절, 상지 움직임 (팔꿈치-손목 C5–C7, 손가락 C8–T1
척추뼈 (등뼈)
흉수신경 T1–T12 몸통조절, 체온 관리 복부 근육
척수원추 마미
L1
요수신경 L2 L3 L4 L5 S1 S2 S3 S4 S5 꼬리신경 L1–S1 하지 움직임 (엉덩이, 다리&발)
천수신경 S2–S4/5 장, 방광&성기능
꼬리뼈
(그림 1.1) 척수(경수, 흉수, 요수, 천수 부위), 척추, 척수 신경의 종단면과 척수 주요 기능의 대략적인 소개 ‘척수손상’ 분류에 대한 논란이 있는 가운데, 이 보고서는 척수, 척수 원추(conus medullaris) 말총
(cauda equine)에 대한 모든 손상을 범주 안에 담았다. 척수에 대한 손상은 외상성, 비외상성이 1. 척수손상에 대한 이해 5
있다. 외상성 척수손상은 추락, 교통사고, 직업과 스포츠 활동 중 발생하는 부상, 폭력을 포함해 많은 다양한 원인으로부터 발생할 수 있다. 한편, 비외상성 척수손상은 대부분 감염성 질환, 종양, 골관 절염과 같은 근골격계 질환, 그리고 배아가 성장하는 동안 발생하는 신경관 결손인 이분척추증과 같은 선천적 질환 등의 기저의 병리학 요인과 관련이 있다. 척수손상의 증상은 손상의 범위나 비외상성 원인에 달려 있지만, 증상으로는 감각의 소실이나 하지, 몸통, 상지의 운동 조절 능력 소실, 또한 신체의 자율 신경(불수의적) 조절 소실 등이 있다. 이는 호흡, 맥박 수, 혈압, 체온 조절, 장과 방광 조절, 성 기능에 영향을 미칠 수 있다. 일반적으로 척수손상 부위가 높을수록 손상 범위도 더욱 광범위하다. 경수 손상은 일반적으로 팔, 다리, 신체의 감각과 운동 능력 소실(마비)의 원인이 되며, 이를 사지 마비(tetraplegia)라고 부른다 (현재는 ‘quadriplegia’란 용어는 많이 사용하지 않음). 경수 4번 이상 부위에 손상을 입은 사람은 손상이 자율 신경 조절 능력을 직접적으로 방해하기 때문에 호흡을 위해 인공호흡기가 필요할 수도 있다. 흉수 손상은 일반적으로 몸통과 다리의 감각과 운동 능력 소실을 야기하며 이를 하지마비
(paraplegia)라고 부른다. 요수 손상은 전형적으로 엉덩이와 다리의 감각과 운동 능력 소실의 원인이 된다. 또한 척수손상의 어떤 형태든지 만성적인 통증을 일으킬 수도 있다. 척수손상으로 인한 감각, 운동, 자율 신경 소실 범위와 정도는 척수의 손상 부위뿐만 아니라 손상이 ‘완전’ 혹은 ‘불완전’인지에 따라서도 달라진다. 척수손상 국제 표준화 분류(International Standards for Neu-rological Classification of SCI), 미국 척수손상 협회(American Spinal Injury Association: ASIA)의 손상 척도(AIS)에 따르면, 천수4−5번에 감각과 운동 기능이 전혀 없는 경우 완전 척수손상으로 간주한다. 반면 불완전 척수손상에서는 가장 낮은 천수 분절인 천수4−5번을 포함하여 손상 부위 이하에 일부 감각 또는 운동 기능이 유지될 수 있으나, 이는 덜 심각한 상황으로 볼 수 없으며 심한 기능 손상으로 이어질 수 있다.
▶ 척수손상의 역사적 측면 효과적인 척수손상 치료의 시작은 1930년대 보스턴 시립 병원의 신경외과 의사인 도널드 먼로 (Donald Munro) 박사가 활동했던 시기로 거슬러 올라간다(6). 그의 활동은 1944년 영국 스토크 맨드빌(Stoke Mandeville) 병원 (1952년 국립 척수손상 센터로 변경)에서 척수손상 병동을 설립했던 루트비히 구트만(Ludwig Guttmann) 경과 견줄 만하다. 향상된 방광 관리와 더불어 2시간 간격의 체위 변경 및 피부 관리 덕분에 80%에 달했던 척수손상 사망률이 감소하기 시작했다. 물리 치료와 작업 치료로 인해 기능적인 결과가 향상되었고, 환자의 사회경제적 요구에 맞춘 전인적인 치료가 진행되었다(7, 8). 구트만은 치료의 방법으로 스포츠를 강조했고 1960년에 패럴림픽으로 확대된 스 토크 맨드빌 게임의 창시자가 되었다(9). 이러한 초기 센터들이 미국, 영국, 기타 다른 나라에서 척수손상 치료의 모델이 되었다.
6 척수 손상의 국제적 관점
척수손상에서 얻어지는 경험의 변화는 또한 전반적인 장애에 대한 이해의 폭넓은 발전으로 나타나고 있다. 장애에 대한 사회적 반응은 지난 수십 년간 상당히 변화되었으며, 이는 우선적으로 장애인 당사자의 권익 옹호 활동 덕분이었다. 장애인 운동은 사회의 모든 영역에서 완전한 통합과 참여를 달성하기 위한 싸움이었다. 개념적으로, 장애인 운동의 초점은 장애를 개인적인 결함에서, 개인의 건강과 기능적 특징과 당사자의 물리적, 사회적, 태도적 환경 측면 사이의 복잡한 상호 작용의 결과로 변화시켰다. 이러한 개념적 변화와 동시에, 장애는 인권적인 관점으로 이해되기 시작했다. 이렇게 문서로 잘 정리된 변화의 내용(10–12)은 장애인 권리 협약 (5)으로 이어졌다. 척수장애인은 1960~1970년대 미국 캘리포니아 버클리의 자립 생활 운동의 초기 선구자로 활동했던 것을 포함해 많은 국가에서 장애인 운동의 선도적 역할을 수행해 왔다.
▶ 사회와 의료 시스템에 있어 척수손상이라는 과제 비교적 낮은 유병률에도 불구하고, 전 세계에서 척수손상의 경험에 따르는 복잡성과 그 경험의 다 양함은 척수손상이 보건 서비스 전반을 모니터링할 수 있는 계기가 되도록 하고 있다. 원칙적으로, 척수손상인은 응급 서비스, 집중 치료, 수술, 안정화 의학 치료, 그리고 지역 사회 복귀, 직업 재활을 비롯한 여러 재활 치료, 지속적인 1차 치료를 포함해 국가가 제공하는 거의 모든 보건 의료 복지 서비스를 경험하게 될 것이다. 따라서 척수손상 치료는 국가의 서비스, 시스템, 정책의 타당성에 대한 근거를 제공하며, 또한 임상의, 의료 전문가, 연구자, 정책 입안자들이 국가 의료 보건 시스템의 강점과 약점을 파악하는 데 도움을 준다. 척수손상 치료는 전반적으로 의료 시스템이 얼마나 잘 작동하고 있는지, 혹은 실패했는지를 보여 주는 좋은 척도이다. 보건 분야를 뛰어넘어, 척수장애인은 완전하고 풍족한 삶을 살기 위해 사회, 교육, 경제 분야의 서비스, 자원, 접근을 필요로 할 것이다. 시민 사회 측면에서는, 자조 그룹, 환자 그룹, 기타 권익 옹호 그룹, 장애인 단체 등이 지식, 자문, 지원을 제공하고, 정책 변화를 위한 로비 활동에 있어 중요한 역할을 수행하고 있다. 만약 정부와 사회가 척수장애인 대처에 실패한다면, 다른 의료 문제를 가진 사람들의 대응에도 실패할 확률이 높다. 척수 장애 경험에 관한 연구와 데이터는 일반적으로 견고한 공공 보건 정책 및 장애가 없는 보건 의료를 이루기 위한 폭넓은 노력과도 관련이 있다. 또한 반대의 접근 방식도 생각해 볼 수 있다. 척수손상 임상의와 연구자들은 척수 장애인이 당면하고 있는 장애와 일상의 도전들과 일부 혹은 많은 부분 겹치는 일반적인 상황에 대한 연구로부터 혜택을 받을 수 있다. 예를 들어, 접근 가능한 대중교통 혹은 직장 복귀 서비스에 대한 연구가 높은 유병률을 보이는 건강 문제와 장애에 초점을 맞추어 진행되는 상황을 고려해 봤을 때, 이 연구를 위해 활용할 수 있는 유용한 증거가 척수손상과 직접적으로 관련되지 않을 수도 있지만, ‘이동에 문제’가 있는 사람들 혹은 ‘휠체어
1. 척수손상에 대한 이해 7
사용자 ’들을 위해 초점을 맞출 수도 있다 . 이 보고서는 구체적으로 척수손상을 직접 다루거나 혹은 광범위한 장애에 초점을 맞추어 관련된 모든 양질의 우수한 연구 내용을 선별해 작성하였다.
척수손상의 경험을 이해하기 위한 도구
척수손상의 경험을 이해하는 데는 두 가지 도구가 매우 중요하다. 첫째는 장애를 인권과 국제 개발 문제로 부각시켜 도덕적 지침을 제공한 장애인 권리 협약이며, 둘째는 기능과 장애의 모델에 개념적으로 명확함을 제공할 뿐만 아니라 데이터 수집과 임상 진료를 위한 역학적 분류 기준으로 사용되는 세계 보건 기구(WHO)의 국제 기능 장애 건강 분류(International Classification of Function-ing, Disability
and Health: ICF)이다(박스 1.1 참조). 박스 1.1. 국제 기능 장애 건강 분류(ICF) ICF는 학계, 의학계, 장애인 당사자가 참여하여 오랜 기간의 과정을 거쳐 도출되었다(13). ICF는 근본적인 건강 상태 뿐만 아니라 환경적 요인들(생산품과 기술, 자연과 건축 환경, 지원과 관계, 태도와 서비스, 시스템과 정책)을 장애의 결정 요소로 간주하고 있다. ICF는 또한 개인의 사회적 참여에 영향을 미칠 수 있는 동기와 자부심과 같은 개인적 요인도 장애의 요인으로 간주한다. ICF는 나아가서 행동을 수행하는 사람의 역량과 이러한 행위를 실질적으로 수행하는 것의 차이점을 구별하고 있다(사람 환경의 핵심적 역할을 강조하는 특징). ICF 안에서, 인간 기능의 문제는 세 가지 상호 관련된 영역으로 범주화되고 있다. 손상은 신체 기능에 문제를 일으키고 신체 조직을 변화시킨다(예: 장과 방광 조절 기능의 마비나 소실). 활동의 제한은 활동을 수행하는 데 어려움을 가져온다 (예: 보행 혹은 식사). 참여의 제약은 삶의 어느 영역에서나 참여의 문제를 일으킨다(예: 고용과 교통 이용에서의 차별). 건강 상태는 질병, 부상, 질환으로 이해되는 반면에, 손상은 건강 상태와 관련된 마비와 같은 신체 기능의 구체적인 쇠퇴를 의미한다. 환경적 요인은 척수손상의 경험을 더욱 악화시키는 장애물이 되거나 (예: 휠체어 접근이 불가능한 교통) 혹은 경험을 개선시키는 촉진제가 되기도 한다(예: 휠체어와 재활 서비스). ICF에서는 세 기능 영역의 일부 혹은 전부가 어려움에 직면하는 상황을 언급하기 위해 장애를 사용한다. 장애는 아래의 그림에서 보여지듯이 환경과 개인 모두의 상황적 요인과 건강 상태의 상호 작용을 통해 발생한다. 국제 기능 장애 건강 분류(ICF)의 개념 정리 건강 상태 (질환 혹은 질병)
신체 기능과 구조
활 동
참여
환경적 요인
개인적 요인 상황적 요인
출처 (14).
8 척수 손상의 국제적 관점
장애인 권리 협약은 이 보고서의 인권 지침을 제시하고 있다. 장애인 권리 협약은 척수장애인을 포함 하여 장애인의 시민, 문화, 정치, 사회, 경제적 권리를 구체적으로 밝히고 있다. 이 협약은 장애인 단체와 다른 시민 사회 단체가 지속적으로 참여한 수년간의 초안 작업을 통해 탄생되었다. 그리하여 “장애인이 모든 인권과 기본적인 자유를 완전하고 동등하게 향유하도록 증진, 보호 및 보장하고, 장애인의 천부적 존엄성에 대한 존중을 증진하기 위한” 광범위한 열망을 천명할 뿐만 아니라 보건, 교육, 고용, 가족 생활에 있어 명확하고 구체적인 인권의 권리를 밝히고 있다. 다른 장에서 명확히 말하겠지만, 장애인 권리 협약은 매우 구체적인 언어로 협약에서 요구하는 인권 개혁의 정확한 분야를 명시하고 있다. 이 보고서의 핵심 주제인 낙인과 태도의 영향, 접근 가능한 환경의 수준, 의료와 사회 서비스의 가용성, 교육·고용·가족과 지역 사회 생활에의 척수장애인 참여 범위가 장애인 권리 협약의 핵심 조항이다. 더군다나 유엔의 특별한 인권 협약으로서, 장애인 권리 협약은 당사국이 반드시 통계 데이터를 수집해야 함을 명시하고 있고 (31조), 독립적인 인권 모니터링 메커니즘을 설치해 (33조) 협약의 의무 사항 이행 및 진전 상황을 증거로 제시할 것을 명확히 하고 있다. 즉, 국가는 장애인에 관한 법과 관행을 개선해야 할 뿐만 아니라 자신들이 이를 실행하고 있다는 증거를 제공할 의무를 지니고 있다. 이 보고서는 국가와 국가 기관이 척수장애인에 대한 미충족 의무 사항의 기본적 증거를 확인하고, 이러한 의무 사항을 이행하기 위한 우수 사례 확인에 도움을 주기 위해 제작되었다.
개요
이 보고서는 2011년 발행된 세계 보건 기구(WHO)/세계은행(World Bank)의 세계 장애 보고서(World
report on disability)를 기반으로 하고 있으며, 광범위한 연구보다는 한 가지 중요한 건강 상태에 대해 보다 구체적으로 밝히고 있다(15). 이 보고서는 정책 입안자, 의료 서비스 책임자, 전문가, 비정부 조직의 대표자, 장애인 당사자 단체, 그리고 척수장애인 서비스 향상에 관심이 있는 모든 사람, 특히 저·중소득 국가의 사람들을 대상으로 발행되었다. 척수손상을 소개하는 1장 이후에, 보고서 2장에서는 전 세계에서 척수손상의 유병률과 발생률에 대해 얻을 수 있는 최고의 역학적 근거를 검토한다. 3장에서는 척수손상의 주요 원인을 살펴보고 이러한 원인과 위험 요인에 대처하기 위한 예방 프로그램을 살펴본다. 보고서 4장에서는 척수손상의 의료와 재활 측면의 종합적 검토 내용을 살펴본다. 이는 참여와 치료 전략의 우수 사례에 해당하는 의료 제도를 논의하는 5장과 관련이 있으며, 이 제도를 이용할 수 있게 만드는 시스템 사례도 함께 5장에서 확인해
1. 척수손상에 대한 이해 9
본다. 6장에서는 관계와 태도를 시작으로 척수손상의 생생한 경험에 초점을 맞춘 후, 7장에서는 척수 손상을 극복할 수 있는 환경의 일반적인 특징을 살펴본다. 그리고 8장에서는 참여에 있어 가장 중요한 두 영역인 교육과 고용에 대해 깊이 고찰해 보고, 9장에서의 포괄적인(cross-cutting) 제안으로 보고서를 마무리한다.
‘척수손상의 국제적 관점’은 전 세계적으로 척수장애인의 삶을 향상시키기 위한 실질적인 지침을 제공 한다. 보고서는 요구와 미충족 요구에 대한 증거를 요약하고, 성공적으로 장애물을 극복하고 부족한 서비스에 대처했던 다양한 서비스 상황과 다양한 국가에 걸쳐 실천되었던 내용들을 강조하고 있다. 이 보고서의 주요 메시지는 다음과 같다. • 척수손상은 상대적으로 발생률이 낮지만 비용이 많이 들어가는 건강 상태이다. • 일련의 예방 전략을 통해 외상성 척수손상의 발생률을 상당히 줄일 수 있다. • 척수손상 이후 사망률은 시기적절한 건강 관리를 통해 줄어들었으며, 이차 합병증으로 인한 재입원도 감소하고 있다. • 척수손상의 결과로 인한 외부 의존성은 재활과 보조 기기 제공을 통해 극복될 수 있다. • 척수손상과 관련된 빈곤과 소외는 장애물을 제거하고 적절한 지원 제공을 통해 최소화할 수 있다.
척수손상은 생활 양상을 바꾸어 놓지만, 삶의 끝은 아니다. 또한 만약 적절한 의료 대책과 사회적 대응이 마련된다면 척수손상으로 인한 가족과 사회의 불필요한 비용 부담도 막을 수 있다.
▶ 참고 문헌 1. Gosselin RA, Coppotelli C. A follow up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 2. Allotey P et al. The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegics in Australia and Cameroon. Social Science & Medicine, 2003, 57:949-958. doi: http://dx.doi.org/10.1016/S0277- 9536(02)00463-X PMID:12850119 3. Liverman CT et al., editors. Spinal cord injury: progress, promise, and priorities. Washington, DC, National Academies Press, 2005. 4. Weerts E, Wyndaele JJ. Accessibility to spinal cord injury care worldwide: the need for poverty reduction. Spinal Cord, 2011, 49:767. doi: http://dx.doi.org/10.1038/sc.2011.73 PMID:21720372 5. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/ english/law/disabilities-convention.htm, accessed 9 May 2012). 6. Eltorai IM. History of spinal cord medicine. In: Lin VW et al., eds. Spinal cord medicine: principles
and practice. New York, NY, Demos Medical Publishing, 2003. 7. Silver JR. History of the treatment of spinal injuries. London, Springer, 2003. 8. Bodner DR. A pioneer in optimism: the legacy of Donald Munro MD. The Journal of Spinal Cord Medicine, 2009, 32:355- 356. PMID:19777856 9. Guttmann L. Sport and recreation for the mentally and physically handicapped. Royal Society of Health Journal, 1973, 93:208-212. doi: http://dx.doi.org/10.1177/146642407309300413 PMID:4276814
10 척수 손상의 국제적 관점
10. Driedger D. The last civil rights movement. London, Hurst, 1989. 11. Oliver M. The politics of disablement. Basingstoke, Macmillan and St Martin’s Press, 1990. 12. Charlton J. Nothing about us without us: disability, oppression and empowerment. Berkeley, CA, University of California Press, 1998. 13. Bickenbach JE et al. Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science & Medicine, 1999, 48:1173-1187. doi: http://dx.doi.org/10.1016/S0277-9536(98)00441-9 PMID:10220018 14. WHO. International classification of functioning, disability and health. Geneva, World Health Organization 2001, page 18. 15. WHO/World Bank. World report on disability. Geneva, World Health Organization, 2011.
1. 척수손상에 대한 이해 11
A global picture of spinal cord injury
2. 척수손상의 국제적 상황
“어느 날 잠에서 깨어 천장을 바라보았다. 머리를 돌리고 싶었으나 돌릴 수 없었다. 팔을 들고 싶었으나 그럴 수 없었다. 몸이 전혀 움직이지 않았다. 소음이 많이 들렸지만, 아무것도 보이지 않았다. 내 곁으로 간호사가 다가왔다. 무엇인가 말하고 싶었지만, 간호사는 내 말을 듣지 못하는 것 같았다. 비명을 지르고 싶었지만, 소리가 입 밖으로 나오지 않았다. 눈을 감았다. 내 이름을 부르는 소리를 들었을 때 눈을 다시 떠서 부모님을 바라보았다. 눈을 감았다 뜬 시간이 나에게는 찰나처럼 느껴졌지만, 하루가 지나 있었다. 부모님께서는 내가 사지 마비가 되었다고 말씀하셨다. 또한 부모님께서는 내가 브뤼셀에 있는 병원에 있으며, 일을 하다가 부상을 당했다고 하셨다. 내 목이 부러졌고 완전히 마비가 됐으며 스스로 호흡도 할 수가 없었다. 갈증이 나서 물을 요청했다. 나는 삼킬 수가 없어서 컵에 빨대를 꽂아서 준 물조차 마실 수가 없었다. 나는 어느 집에서 일을 하고 있었다. 확실하지는 않지만, 사다리에서 떨어지거나 미끄러진 것 같다. 그때 6미터 아래 콘크리트 바닥으로 떨어졌다.” (군터, 벨기에)
“나는 19살에 교통사고로 경수 5, 6번이 손상되었으며, 지금까지 30년 동안 휠체어를 타고 생활하고 있다. 나는 세상에서 가장 북쪽에 위치한 함메르페스트란 도시에 살고 있다. 1년 중 최대 5개월 동안 길거리가 눈으로 덮이고 추운 날씨를 기록하는 이 북쪽 도시에 산다는 것은 휠체어로 야외 생활을 하는 나에게는 상당 부분 물리적으로 어려운 일이다. 내가 손상을 당했을 때는 최대한의 보조가 필요한 사람 중의 한 명이었다. 바로 당시에는 지역 사회에서 가정 중심 서비스를 막 만들기 시작한 직후였다. 그 이후로, 나는 가능한 한 일반 시민으로서 정상적인 삶을 살기 위해 내 요구와 관련된 서비스에 참여할 수 있는 특권을 누려 왔다.“ (셸, 노르웨이)
“나는 4년 전 서른 살 때 쓰촨성 지진으로 손상을 당했다. 지금은 일상적인 이동을 위해 휠체어를 사용하고 있다.” (첸, 중국)
“나는 51살이고, 혈전 압박으로 인한 흉수 6번 완전 하지마비 장애인이다. 처음에 마비가 됐을 때 충격을 받았다. 왜냐하면 1984년에 의사로부터 잘못된 진단을 받았기 때문이다. 나는 장애 이후에 주류의 자립 생활로 복귀하는 것이 쉽지 않다고 생각한다. 내가 장애 진단을 받은 이후에 장애를 받아들일 수 있도록 많은 도움을 받았다.” (니파판, 태국)
“2002년 11월 초에 승마 경기 대회 중에 친구 말에서 떨어졌다. 나는 팔 조절이 어느 정도 가능한 불완전 경추 6-7번 척수손상 장애인이 되었다. 물건을 쥐는 능력을 소실했음에도 불구하고, 손으로 와인 잔을 잡거나(매우 중요하다!) 서명을 하는 것과 같이 손을 사용하는 여러 가지 일을 충분히 할 수 있을 정도이다.” (익명, 뉴질랜드)
2 척수손상의 국제적 상황 장애인 권리 협약 31조는 당사국에 협약 내 권리 이행을 위한 정책 수립과 시행에 필요한 통계학적 데이터를 수집하도록 하는데, 이는 척수장애인과 다른 장애인들이 가족 생활, 교육, 고용에서부터 지역 사회와 국가에 이르기까지 사회의 모든 영역에 완전히 참여할 수 있도록 하기 위함이다. 척수손상의 타당하고 신뢰성 있는 데이터는 척수손상 발생을 예방하고, 척수장애인의 삶을 개선하고, 또한 향후의 척수손상 관련 서비스 수요를 예측하기 위한 프로그램과 정책에 대하여 정보에 기반한 결정을 내리는 데 있어 매우 중요하다. 척수손상의 사회·경제적 영향을 이해하기 위해서는 척수장애인의 전반적인 숫자(유병률)와 새롭게 발생하는 숫자(발생률), 척수손상의 원인(표 2.1)의 지표 정의 참조)에 대한 데이터와 관련해 척수손상의 상황에 대한 완전한 역학적 정보가 필요하다. 이 정보는 미래 경향을 예측하기 위해 주기적으로 수집 되어야 한다. 또한 국가 차원에서의 근거에 기반한 정책과 계획 수립에는 척수손상의 경험에 영향을 미치는 환경적 요인들, 척수장애인의 사회·경제적 상황, 그들의 충족 및 미충족 요구, 척수손상의 비용에 대한 정보가 필요하다. 이 장은 유병률, 발생률, 사망률, 외상성/비외상성 척수손상(TSCI / NTSCI)의 원인과 비용의 지표(표 2.1 참조)를 이용한 기본 역학 정보를 제시하며, 척수손상 데이터와 근거 그리고 정보의 정확도를 향상 시킬 수 있는 방법에 대한 논의를 담고 있다. 이 장에 제시된 정보들은 동료 점검이 진행된 저널 기사, 정부 발행물, 그리고 척수손상 등록 시스템, 인구 등록 시스템, 병원의 입/퇴원 자료, 건강 총조사 자료 등을 이용한 전향적·후향적 연구에서 수집되었다. 특별히 보고서 작성을 위해, 2000 년 1 월부터 2012 년 8 월 사이에 발간된 척수손상 역학에 관한 출판물에 대해 체계적 문헌 고찰이 진행되었다. 필요시 메타 분석도 적절하게 진행하였다. 데이터를 검색하기 위해 사용한 방법과 데이터의 한계점에 관한 더 자세한 설명은 부록 A 와 B 에서 확인할 수 있다.
2. 척수손상의 국제적 상황 15
척수손상에 대해 우리가 알고 있는 것은 무엇인가?
척수손상의 규모나 비용에 관한 자료는 제한적이다. 소수의 고소득 국가에만 국가 통계 자료가 존재한다. (표 2.1) 국가에서 일반적으로 사용하는 척수손상 역학 지표의 예시 지표 설명 사용과 제한 다음 내용에 따라 변화가 발생 ∙위험에 노출된 모집단(예, 척수손상 사례의 근원 모집단)의 올바른 규정 여부. ∙척수손상 사례의 정의 여부. ∙어느 척수손상-사례 정의로 정의된-을 포함시켰는지 사례 확인의 완결성 여부. 예를 들어, 외상성 척수 손상의 발생률은 손상 현장에서 사망한 사람을 포함 하지 않을 수도 있으며, 비외상성 척수손상 발생률은 임종치료(end-of-life care)동안 발생한 척수손상은 포함하지 않을 수 있다(예 척추전이)
척수손상 발생률 데이터는 구체적인 기간동안 일정 모집단 내에서 발생률 척수손상을 당한 사람의 수를 반영한다. 일반적으로는 간 백만 명의 모집단 내에서 수 건의 새로운 척수손상 발생이 보고된다. 발생률은 척수손상 위험의 직접적인 측정치이다. 병인에 의한, 그리고 인구통계학 요소 (성별, 연령), 직업, 지리적 위치(도시, 시골) 변수에 의한 계층화된 발생률 추정은 위험 그룹을 구별짓거나 확인할 수 있고, 이를 바탕으로 효과적인 예방 정책과 프로그램을 도출할 수 있다.
유병률
일정 기간동안 척수손상을 입고 살아가는 사람의 숫자. 유병률은 이차 예방에 효율적인 지침이며, 건강관리와 백만명당 숫자로 측정. 유병률은 위험과 상태의 지속 사회적 지원을 위해 필요. 기간에 의해 영향을받으며, 상태의 지속은 회복이나 죽음중 하나로 귀결된다. 연령, 성별, 그리고 직업, 재산 상태와 같은 사회경제적 범주에 의해 세분화된 정기적인 데이터 수집을 통해 척수손상의 경험을 안고 살아가는 손상인들의 중요한 패턴이나 경향을 발견할 수 있다. 병인 메커니즘, 의도, 장소, 활동에 의해 척수손상을 일차 예방, 외상 치료, 재활서비스를 위해 지역 차원의 당한 사람들의 수를 지칭하는 절대적인 수치. 계획을 수립하는데 유용. 표준화사망률은 일반 국민에 대한 척수장애인의 사망 률을 표준적으로 측정한 것이다. 만약 SMR이 1.0으로 표준화되면 척수장애인의 사망 위험 증가가 없는 것이 고, 만약 수치가 1.0이하이면 위험 증가가 있는 것이다. 코호트의 SMR 계산을 위해서 다음 내용이 필요하다. ∙연령별, 성별 척수장애인의 수 ∙사망한 척수장애인의 수 ∙일반 국민의 성별, 연령별 사망률 일반 국민과 비교해 척수장애인의 사망률이 높은지, 낮은지를 결정하기 위해 사용. 제한: 집단들 간에 표준화사망률 추정치의 차이는 부분 적으로 일반 인구의 사망률의 차이와 사망률 확인의 완전성의 차이가 반영될 수도 있다.
병인
표준화 사망률 (SMR)
치사율
척수손상 이후 사망한 사람들의 절대적 수치. 척수손상과 치사성의 관계를 보여줌. 만약 병인으로 세분화할 수 있다면, 관련 대책을 확인 비교를 위해 정보는 다음의 그룹별로 표준화되어야 한다 하고 이행할 수 있다. ∙현장에서 사망한 외상성 척수손상을 입은 손상인의 수를 포함한 척수장애인 수 ∙병원에서의 치사율 ∙퇴원후 치사율(30일, 1년, 5년 등)
16 척수 손상의 국제적 관점
그 외의 다른 데이터의 출처가 워낙 적고, 방법론적으로 워낙 다양해서 세계적인 유병률과 발생률에 대해 신뢰할 만한 점 추정(point estimate) 계산이 불가능하다. 존재하는 가장 좋은 SCI 데이터는 SCI 에 대한 전반적 그림을 제공한다. 아래에 이에 대해 요약하였으며 나머지 부분에서 상세하게 다뤄질 것이다. 척수손상은 상대적으로 발생 건수는 낮지만, 삶의 방향을 변화시키고 비용이 많이 든다. 또한 척수손상의 사망 위험은 국가의 소득 수준에 따라 매우 다르게 나타나며, 양질의 의료와 재활 서비스의 이용 가능 정도에 따라서 상당히 좌우된다. 전 세계적으로 얼마나 많은 사람이 척수장애를 가지고 살고 있는지는 명확하지 않으나 국제 발생률 데이터에 따르면, 매년 250,000~500,000 명의 사람들이 척수손상을 입고 있다. 이 발생 건수의 대부분은 외상성 척수손상이며, 주요 원인은 교통사고, 추락, 폭력 등이다. 최근 연구는 척수손상 발생 연령의 증가와 비외상성 척수손상 비율의 점진적 증가를 보여 주고 있으며, 이는 전 세계 인구의 노령화에 일부 기인한다. 또한 최근 자료는 척수손상이 사망 위험 증가와 관련이 있음을 보여 준다. 척수장애인은 손상 발생 후 다음 1 년 이내에 가장 높은 사망 위험을 가진다. 심지어 치료 시스템이 발달해 생존율이 높은 고소득 국가에서도 척수장애인은 여전히 높은 사망 위험에 놓여 있으며 일반 인구보다 조기 사망할 가능성이 더 크다. 저소득 국가의 척수장애인은 고소득 국가에서는 더 이상 사망의 주요 원인이 아닌 예방 가능한 이차 합병증으로 계속 목숨을 잃고 있다. 척수손상 이후의 비용은 상황에 따라 상당히 다양하며, 이를 비교할 수 있는 데이터는 소수에 불과하다. 기존 자료에 따르면, 척수손상이 상당한 직간접 비용을 발생시키는 것은 분명하며, 척수장애인 스스로 이 비용의 대부분을 부담하고 있다. 척수손상의 부위와 정도는 비용에 많은 영향을 미친다. 직접 비용은 척수손상 발생 후 첫해에 가장 높으며, 평생 동안 들어가는 간접 비용이 직접 비용을 초과할 가능성이 있다. 척수손상 데이터 수집의 양적·질적 향상은 시급히 이뤄져야 할 필요가 있다. 척수손상의 데이터와 관련된 현 상황의 문제점과 자료의 양과 질을 향상시키기 위한 제안은 이 장의 마지막 부분에서 다루도록 하겠다.
▶ 척수손상의 유병률 척수손상의 유병률에 관한 데이터는 보건 의료와 사회적 지원 수요 파악, 이차 예방 조치의 영향을 평가하는 데 있어 중요하다. 하지만 안타깝게도, 척수손상의 유병률에 관한 데이터는 매우 드물다. 현재는 발생 원인별 전체 척수손상의 유병률에 대한 신뢰할 만한 세계적인, 지역적인 데이터가 없는 상황이다. 아래 표에 6 개 국가에서의 유병률 추산이 제시되어 있다(표 2.2 / 2.3 참조). 방법론적으로 문제가 있거나, 상당히 오래된 자료로 현재 상황을 반영하지 못한 몇몇 자료 및 측정값들은 포함 시키지 않았다. 2. 척수손상의 국제적 상황 17
(표 2.2) 외상성 척수손상(TSCI) 유병률 국가 이란 핀란드 테헤란 카필라(Käpylä) 재활 센터(헬싱키), 헬싱키 대학 중앙 병원 지역 평가 연도 2008 1999 연구 디자인과 대조 집단 전향적, 횡단면적, 국가 등록 시스템 후향적, 병원 데이터 등록 시스템 소아/성인 백만 명당 척수손상 유병률 성인, 소아 성인, 소아 440명 280명
노르웨이 호르달란 주, 송노표르다네 주 아이슬란드 란드스피탈리 대학 병원 (레이캬비크) 캐나다 호주 출처: (1-6)
2002 2009 2010 1997
후향적, 종단 / 병원 데이터를 이용한 코호트 후향적, 종단 / 병원 데이터를 이용한 코호트
성인, 소아 성인, 소아
365명 526명 1,298명 681명
전국 전국
후향적, 횡단면적, 국가 등록 시스템, 모델링 연구 성인, 소아 후향적, 국가 등록 시스템, 모델링 연구 성인
(표 2.3) 비외상성 척수손상(TSCI) 유병률 국가 캐나다 호주 출처: (1, 7)
지역 전국 빅토리아 주
연도 2010 2010
연구 디자인과 대조 집단
소아/성인 척수손상
백만 명당 유병률 1,227 367 (16세 이상 성인 대상의 경우 455)
후향적, 횡단면적; 국가 등록 시스템 성인, 소아 후향적, 횡단면적 국가 등록 시스템 성인, 소아
자료에 따르면, 2010 년 캐나다의 전반적인 척수손상 유병률(외상성과 비외상성 합산)은 인구 백만 명당 2,525 명, 또는 전체 약 85,000 명이다. 연령별 유병률을 살펴보면, 외상성 척수손상은 젊은 층에서 집중적으로 나타나는 반면 비외상성 척수손상은 노년층에서 많이 나타났다(그림 2.1 참조). 외상성 척수손상의 유병률 수치(표 2.2 참조)를 보면, 핀란드 (5)에서는 백만 명당 280 명으로 나타 났는가 하면 캐나다(1)에서는 백만 명당 1,298 명까지 나타난다. 이러한 유병률 차이는 실제로 5 배의 차이가 난다기보다는 측정 방법이 달라 발생했을 가능성이 높다. 호주와 캐나다의 유병률 계산은 발생률 데이터와 질병 기간 정보를 포함시켜 구하는 모델화 기법에 의해 도출되었다. 캐나다에서의 높은 비율은 북미 추세를 반영하는 것일 수도 있고 혹은, 캐나다에서 현재 사용하는 최고의 근거를 위한 추정 방법이 발생률의 과대 측정을 야기할 수도 있는 반면, 호주에서 적용한 방법은 발생률의 과소 보고를 야기했을 수도 있다. 다른 국가들은 병원과 국가 등록 시스템 그리고 횡단적, 종단적 연구로부터 파악된 데이터를 제시하고 있다. 이런 국가들 간의 유병률 측정치를 보다 잘 이해하기 위해서는, 현재는 존재하지 않는, 인구통계학적 차이, 연령과 성별에 따른 원인별 발생률 그리고 연관된 기대 수명과 관련한 데이터 등이 더 필요하다.
18 척수 손상의 국제적 관점
출처: S. Karger AG 출판사(바젤, 스위스)의 동의하에 (1)에서 채택.
(그림 2.1) 2010년 캐나다 연령별 척수손상 유병률 추정치 비외상성 척수손상의 유병률 데이터(표 2.3 참조)는 호주(백만 명당 306 명)와 캐나다(백만 명당 1,227 명)에만 존재한다(1, 7). 호주 데이터는 빅토리아 주에서 시행한 연구로부터 도출되었으며 이는 기대 수명과 국가 재활 성과 데이터에 기반하였고, 이를 바탕으로 나머지 전체 국가의 유병률을 추정하였다. 국가 재활 실적 자료에 (7) 16 세 이상의 성인의 경우에서는 백만 명당 455 명이라는 유병률을 보였고, 이 결과는 인구 노령화가 비외상성 척수손상 유병률 증가의 주요 요인일 수 있음을 제시하고 있다. 캐나다의 높은 유병률은 실제적인 유병률의 차이라기보다는 연구에서 사용한 추정 법이 서로 다름으로 인한 결과일 것이다.
▶ 척수손상 발생률 모든 발생 원인에 따른 국가별 척수손상 발생률에 관한 적정 연구들을 바탕으로 보면, 전 세계 척수 손상 발생률의 측정치는 매년 백만 명당 40-80 건이 새로이 발생하는 것으로 추정하고 있다. 이는 매년 250,000 – 500,000 명의 사람들에게 척수손상이 발생한다는 의미이다. 외상성과 비외상성 척수손상의 발생률 데이터를 모두 보여 주는 연구는 척수손상 인구의 전반적인 구성 정보를 제공한다. 외상성 또는 비외상성 척수손상 인구의 특징과 자원적 요구가 다르기 때문에 이 정보의 수집은 중요하다. 외상성 척수손상의 비율은 광범위한 범위에서 다양성을 보이고, 지역에 걸쳐서도 다르게 나타난다(8–11). 역사적으로 볼 때, 척수손상의 약 90%가 외상성 원인을 가지고 있었으나, 최근 연구 자료의 데이터를 살펴보면, 비외상성 척수손상이 (12) 증가하는 미세한 경향을 나타내고 있다. 비외상성 척수손상 인구는 대체로 더 나이가 많고, 짧은 기간이지만 더 비싼 치료비가 필요한 진행성 질환을 동반한다. 2. 척수손상의 국제적 상황 19
대부분의 척수손상 발생률에 관한 연구는 외상성, 비외상성 중 하나만을 다루고 있는데, 이는 데이터 출처와 데이터 수집 방식의 차이 때문일 것이다. 따라서 외상성 그리고 비외상성 척수손상의 발생 률과 병인은 아래에서 각각 따로 다뤄졌다. 비외상성 척수손상의 데이터는 외상성 척수손상 데이터와 비교했을 때 제한적이다.
▶ 외상성 척수손상 발생률 주어진 기존 데이터로는 외상성 척수손상의 발 생률에 대한 의미 있는 지역별 추정치를 얻는 것은 불가능하다. 신뢰할 수 있는 예측 변수 (predictor)가 부족하기 때문에 통계학적 모델링은 배제했다. 국가 수준의 외상성 척수손상 발생률은 (그림 2.2)에서 보여지듯이 백만 명당 13 건에서 53 건에 이르기까지 나라별로 매우 다양하게 나타난다. 외상성 척수손상의 발생률은 유럽보다 북미가 더 높은 경향이 있고, 이는 미국에서 폭력 발생 빈도가 높기 때문일 수 있다. 다른 지역의 발생률 자료는 아예 존재하지 않거나 혹은 국가 내, 국가별로 변동 폭이 너무 심해서 타당한 요약 통계 자료를 제공하기가 어렵다. 예를 들면, 중국 북경시의 데이터는 백만 명당 60.6 명 (21)인데 반해 톈진시의 발생률은 백만 명당 23.7 명 (22)으로 보고되었다. 외상성 척수손상의 발생률은 다음의 요인들로 인해 국가별로 상당한 차이를 보인다. • 위험도 차이와 관련한 실제 국가별 발생률의 차이 • 측정 시의 방법론적 접근에서 기인하는 차이 • 연구 대상 인구(성인, 아동, 또는 모두) 구성으로 인한 차이. 아동의 외상성 척수손상 발생은 낮은 편이다. 성인의 발생률만을 보고한 연구는 전체 인구에서의 발생 비율이 과측정될 수 있고, 성인과 아동의 발생률 데이터를 통합 보고한 연구와의 비교가 어렵다. • 데이터의 대표성. 핀란드와 같이 국가별 척수손상 등록 시스템을 갖춘 몇몇 국가를 제외하고는, 발생률 측정이 전체 국가의 대표성을 가질 수 없는 도시나 지역의 자료로부터 추산되었다. 출처: a (1); b (13); c (2); d (14); e (15); f (16); g (17); h (18); i (19); j (20).
(그림 2.2) 외상성 척수손상의 연간 발생률 추정에 있어 국가별 차이
20 척수 손상의 국제적 관점
이러한 차이점들에도 불구하고, 외상성 척수손상 국가별 발생률 데이터에서는 몇 가지 경향이 나타난다.
1. 외상성 척수손상의 발생률이 몇몇 국가에서는 감소하는 중이지만, 다른 국가들에서는 비슷한 수준을 유지하거나 오히려 증가하고 있다. 미국, 핀란드, 호주 연구에서는 도로 교통사고로 인한 외상성 척수손상은 감소하는 경향을 보이고 있다. 하지만 이 결과는 모든 선진국에서 나타나는 것은 아니다. 노르웨이의 두 지역에서의 자료를 보면, 1952년에서 2001년까지 외상성 척수손상 발생률은 남성의 경우 백만 명당 9.9에서 34.5로, 여성의 경우 백만 명당 1.9에서 8.2로 10년마다 꾸준히 증가하는 것으로 나타났다(3). 프랑스에서는 도로 교통사고로 인한 사망률이 눈에 띄게 감소했지만 전체 척수손상 발생률은 변화가 없는 모습이다(23). 이것은 자동차 운전자의 척수손상 발생률은 감소한 반면, 모터사이클 운전자와 보행자, 자전거 이용자의 발생률이 증가하는 양상의 변화를 반영하고 있다.
2. 남성 중에서 성인 외상성 척수손상 발생률이 지속적으로 더 높게 나타나고 있다. 소아·아동 대상 연구에서는 전형적으로 남녀 비율이 비슷한 것으로 보고된 반면에 (24, 25), 성인 연구에서는 주로 남녀 비율이 최소 2:1로 나타 나며, 어떤 자료에서는 차이가 더 큰 경우도 있다. 예를 들면, 그리스의 테살로니키 지역 (7.3:1) (26), 아일랜드(6.7:1) (18), 카타르 (8.3:1) (19), 스웨덴의 스톡홀름(3.3:1) (26) 에서는 남녀 비율의 상당한 차이가 나타나고 있다. 미국의 외상성 척수손상 발생률 데이터는 모든 연령대 그룹에서 남성이 더 높게 나타 나고 있으며, 82%의 외상성 척수손상 발생이 출처 (27, 28).
(그림 2.3) 외상성 척수손상의 성별, 연령별 분포
남성에게 나타나는 16~21세 그룹에서 가장 높게 나타났다(그림 2.3 참조). 이러한 결과는 음주, 운전 방식, 고위험 스포츠에 참여하는 등 아동기 이후에 나타나는 성 역할이 일부분 외상성 척수 손상 발생률의 요인이라는 견해를 뒷받침한다(13, 29-31).
3. 외상성 척수손상은 젊은 성인과 노인 그룹에서 가장 흔히 발생한다. (그림 2.4)의 캐나다 성별 특이적 그리고 연령별 특이적 외상성 척수손상 발생률의 예에서 볼 수 있듯이, 두 연령대 그룹인 젊은 성인(남성: 20-29세, 여성: 16-19세)과 노인(남성: 70세 이상, 여성: 60세 이상)에서 외상성 척수손상 발생률이 높게 나타나고 있다(1). 65세 이상의 연령에서 발생률이 증가하는 것은 최근에 관찰되는 양상이다. 캐나다에서의 연구에서는 60세 이상의 경우 백만 명당 51.4명 (32)으로 나타
2. 척수손상의 국제적 상황 21
나는데, 이는 중국과 호주의 연구 결과로 뒷받침되고 있다(16, 33). 호주에서는 지난 25년 동안, 65세 이상 인구의 척수손상 비율이 4%에서 12%로 증가했다(34). 이와 같은 내용은 노인층에서 나타나는 추락 사고로 인한 높은 발생률이 반영된 결과이다 (그림 2.4, 그림 2.7 참조). 소아 외상성 척수손상 발생률은 한 보고에서 백만 명당 20명에 가까운 소아 외상성 척수손상 발생률을 보여 준 미국 (37)을 제외한, 측정 자료가 있는 대부분의 국가 에서 낮은 편이다(예: 백만 명당 4-8명) (25, 25, 36). 연구에 따르면 전형적으로 청소년과 중년층에서는 중간 정도의 발생률이 나타난다 출처 (1).
(그림 2.4) 캐나다의 성별, 연령별 외상성 척수손 상 발생률
(1-3). 또한 상해를 당한 후 당시 연령이 증가하고 있다는 몇몇 증거들이 제시되고 있다 . 한 예로, 노르웨이에서는 외상성 척수손상 평균 연령이 1952년에서 2001년 사이에 40.2세에서 48.9세로 증가했으며, 특히 여성은 24.7세에서 57.7세로 증가하면서 평균 연령의 변화가 가장 크게 나타났다(3).
발생 원인(Etiology) WHO 회원 지역들 가운데 외상성 척수손상 발생 원인에 관한 기존 근거에 따르면, 가장 흔한 발생 원인 세 가지는 이동 수단에 의한 사고(특히, 도로 교통사고), 낙상, 폭력(그림 2.5 참조)이다. (그림 2.5)의 요약된 측정치로는 지역별 차이는 확인할 수 있지만, 이 자료는 상해를 당한 원인과 내용에 있어 국가별 차이를 적절하게 제시하지는 못한다. 도로 교통사고는 외상성 척수손상의 주요 원인이다. 아프리카 지역에서는 교통사고가 전체의 70% 가까이를 차지하며, 다른 WHO 지역에서는 동남아시아 지역 40%부터 서부 태평양 지역 55%의 범위로 나타났다. 미국 미시시피 주의 한 연구 자료에서는 척수손상으로 이어진 차량 사고의 최소 75%에서 안전벨트가 없었거나 사용되지 않았음을 보여 줬다(31).
22 척수 손상의 국제적 관점
주: 지역별 통계를 위해 자료를 제출한 국가들의 숫자는 다음과 같다. 아프리카3개국, 미주 4개국, 동부 지중해 5개국, 유럽 13개국, 동남아시아 3개국, 서태평양 3개국 출처: 아프리카 – (38–45); 미주 – (12, 30, 32, 35, 46–52); 동부 지중해 – (4, 53–56); 유럽– (2, 3, 9, 13, 17, 18, 20, 26, 57–67); 동남아시아 – (68–72); 서태평양– (16, 21, 22, 34, 73–80).
(그림 2.5) WHO 지역별 외상성 척수손상 분포
출처 (27, 28).
(그림 2.6) 연령별 척수손상 병인(젊은 연령층)
2. 척수손상의 국제적 상황 23
이와 유사하게 나이지리아 척수손상 연구에서도 보고된 교통사고 상해자 63명 모두 안전벨트를 착용하지 않은 것으로 조사되었으며 (38), 이는 차량 탑승자의 척수손상을 줄이기 위해 안전벨트 착용이 얼마나 중요한지를 보여 주고 있다(추가적인 정보는 3장 참조). 추락은 외상성 척수손상의 두 번째 주요 요인으로, 동부 지중해와 동남아시아 지역의 전체 사례 중 40% 이상을 차지하고 있다. 예를 들면, 네팔에서는 40%의 척수손상이 사료를 모으기 위해 나뭇잎을 따다 추락해서 발생했고, 28%는 건물에서 추락한 결과 발생했다고 보고되었다(81). 다른 WHO 지역이 27%-36%의 분포를 보인 가운데, 아프리카 지역에서는 추락으로 인한상해가 가장 낮은 비율(14%)을 보였다. 자해를 포함한 폭력이 외상성 척수손상의 세 번째로 흔한 원인이다. 외상성 척수손상의 원인 중 폭력의 상대적인 비율은 매우 다양하게 나타나며, 미주, 아프리카 그리고 동부 지중해 지역에서 각각 14%, 12%, 11%로 가장 높게 나타났다. 주로 전쟁에 시달린 몇몇 국가별 자료에서는 폭력이 훨씬 더 높은 비율로 나타났는데, 아프가니스탄의 경우 폭력으로 인한 비율이 전체 외상성 척수 손상의 60%를 차지하는 것으로 보고되었다(56). 또한 폭력으로 인한 외상성 척수손상의 비율은 브라질 42% (10), 터키 25% (64), 남아프리카공화국 21% (44)에서도 높게 나타났다. 미국에서는 11.7%의 척수손상이 화기 (82)에 의한 것이었고, 특히 특정 연령대나 인종에서는 화기로 인한 비율이 28%까지 높게 나타나는 경우도 있었다(27). 서부 유럽은 평균적으로 4% (59)를 보이고, 노르웨이, 캐나다, 호주 같은 국가에서는 평균 2% 미만으로 보고되었다(3, 6, 30). 마지막으로 이스라엘과 핀란드에서는 자살 시도가 외상성 척수손상 사례의 10% 이상을 차지하는 것으로 나타났다(5, 8). 모든 지역에 걸쳐, 스포츠와 레저 활동은 외상성 척수손상의 10% 미만의 원인을 차지했다. 이 가운데 미주는 스포츠 관련 외상성 척수손상이 8%로 가장 높은 수치를 기록했다. 그러나 국가별 데이터를 살펴보면 미국 28% (27), 한국 25% (83), 프랑스 22% (84) 등 몇몇 국가들에서는 더 높은 수치를 보이기도 하고, 나이지리아처럼 스포츠로 인한 손상이 1.7%로 낮게 나타나는 경우도 있었다(43). 외상성 척수손상의 원인은 또한 활동, 장소, 환경과도 관련이 있을 수 있다. 직업 관련 손상이 전체 외상성 척수손상의 최소 15%를 차지하고 있으며 (2, 8, 16, 18, 26, 60, 85), 음주와 약물 사용은 캐나다의 브리티시컬럼비아 주 (30)의 모든 외상성 척수손상 사례 중 34%에서 그리고 미국 미시시피 주에서는 교통 관련 외상의 34%에서 기여 인자로 확인되었다(31).
인구통계학적 경향 연령과 성별은 생애 주기에 걸쳐 외상성 척수손상의 발생 원인에 영향을 미친다. 미국의 아동과 청소년층의 척수손상 데이터 - 다른 국가들의 문헌을 통해서도 뒷받침되는 - 를 보면, 1세 미만 에서는 척수손상의 원인으로 내과적 그리고 외과적 원인들이 가장 흔한 것으로 나타나고 있다.
24 척수 손상의 국제적 관점
출생부터 5세까지는 4륜 모터 자동차 충돌이 모든 외상성 척수손상의 65%나 차지하고 있다(28). 교통사고(예: 도로 충돌 사고)가 아동과 청소년층 외상성 척수손상의 가장 흔한 원인으로 되어 있으며, 남자아이들보다 여자아이들에게서 더 높은 비율을 차지한다. 5세 이상의 연령에서만 통계학적으로 의미 있는 차이가 존재하나, 폭력은 모든 연령대에서 남성에서 더 높은 비율로 척수손상의 원인이 되고 있다. 스포츠는 13세 이후의 연령에서 여자아이들보다 남자아이들에서 외상성 척수손상을 더 많이 발생시키는 것으로 나타났다. 이런 경향은 몇 가지 예외를 제외한 다른 국가의 데이터에도 반영되고 있다. 평균 연령이 9세였던 두 연구에서 폭력과 공격이 브라질에서 더 높은 비율로 나타났으며, 영국에서는 추락이 높은 비율로 나타났음을 보여 주었다(10, 86). 교통사고가 모든 연령대에서 척수손상의 주요한 원인인 반면, 2011년 국립 척수손상 통계 센터 (National Spinal Cord Injury Statistical Center: NSCISC)의 연례 통계 보고 (35)에서 나타난 미국 데이터 (그림 2.7)에서 볼 수 있듯이 60세 이상에서는 추락이 가장 흔한 원인이 되고 있다.
출처(35).
(그림 2.7) 연령별 척수손상 병인(모든 연령층) 추락의 높이를 특이적으로 조사한 한 중국의 연구에 따르면, (그림 2.8)에서 보여지듯이, 높은 곳에서의 추락은 15-44세 사이에서 더 흔하게 나타났고, 낮은 곳(1미터 이하)에서의 추락은 45세 이상에서 더 흔하게 나타났다(80).
2. 척수손상의 국제적 상황 25
▶ 비외상성 척수손상 발생률 이분척추증(Spina bifida)에 대한 특이적 연구를 제외하면 외상성 척수손상(TSIC) 발생률에 대한 연구에 비해 비외상성 척수손상(NTSCI) 발생률에 대한 연구는 확실히 적은 편이다(박스 2.1 참조). 세계적, 지역적인 발생률을 추정할 수가 없는데, 그 이유는 포함하거나 제외하는 기준이 다르고, 불완전 사례 확인, 위험 인구 보고의 부적합과 같은 조사 방법론적 문제들로 인해 기존 연구가 대표성 이나 비교성을 가질 수 없기 때문이다(87). 캐나다에서 비외상성 척수손상 발생률은 백만 명당 68 명으로 추정된다(1). 호주에서는 빅토리아 주 데이터를 이용해 백만 명당 26명으로 발생률을 보고하고 있다(87-89). 특수 척수손상 병동을 갖춘 스페인 한 병원의 데이터에 따르면, 스페인은 백만 명당 11.4명으로 보고하고 있다(90). 비외상성 척수손상의 발생률은 연령과 성별에 따라 다양하게 나타난다. 외상성 척수손상의 경우와 마찬가지로, 비외상성 척수손상의 발생률도 여성보다 남성에서 높게 나타난다. 외상성 척수손상 과는 다르게 비외상성 척수손상의 발생률은 나이에 따라 점차 증가하게 되는데 (그림 2.9 참조), 이 위험도는 아마도 나이의 증가에 따른 건강 악화의 증가 양상에 영향을 받기 때문일 것이다 . 비외상성 척수손상이 노년층에서 더욱 흔하게 나타나고 (89), 지구촌 노령화 추세를 고려할 때, 비외상성 척수손상 발생은 계속 증가할 것이고, 향후 수십 년 안에 외상성 척수손상 발생을 추월할 수도 있다(7).
주: MVCs = 모터 자동차 충돌 출처: 매니(Maney)출판사의 동의아래 (80)으로부터 재현
출처 (89).
(그림 2.9) 호주의 연령, 성별에 따른 비외상성 척수손상 발생률
(그림 2.8) 중국의 연령에 따른 병인의 분포
26 척수 손상의 국제적 관점
박스 2.1. 이분척추증 발생률 대부분의 연구는 이분척추증이 신생아 만명당 2-12명꼴로 발생한다고 추정하고 있다. 오만(만명당 32명)과 중국(만명당 58명)을 비롯한 몇몇 국가의 연구는 보다 높은 발생률을 보여주기도 한다. 이 보고서를 위해 수행된 메타분석 결과, 출생 데이터를 사용한 연구에서는 전반적인 이분척추증 발생률이 약 4.5명/10,000명 (95% CI: 3.7–5.3)인 반면, 출생/ 사산 데이터 혹은 출생/사산/임신중절(TOP)데이터를 사용한 연구에서는 각각 10명/10,000명 (95% CI: 8.1–11.8)과 9.1명/10,000명 (95% CI: 6.7–11.4)으로 나타났다(사용한 방법과 용어는 부록 C참조). 출생, 사산, 임신중절 데이터에 기반한 발생률을 보고한 국가 연구에서 높은 발생률을 보일 것이란 합리적인 예측을 할 수 있다. 하지만 아래의 그림 에서 볼 수 있는 바와 같이, 사실은 그렇지 않다. 이것은 이분척추증의 발생률이 국가 간에 차이를 보일 뿐 아니라 계산에 사용된 데이터의 출처가 각기 다르기 때문일 수 있다
이분척추증 발생률
주: 이 자료는 세계적으로 보고된 이분척추증의 발생률에 대한 메타분석의 요약 통계와 함께 분석의 결과를 도표로 정리한 포레스트 플롯 (Forest plot)이다. 메타분석에 사용된 데이터는 관련 문헌의 체계적 검토에서 확인된 연구에서 추출하였다. 각 연구의 회색 그래프의 크기는 메타분석 연구를 위해 할당된 가중치에 비례 한다. 각각의 연구는 95% 신뢰구간을 가지며, 이는 이분척추증 발생률의 점 추정치를 통과 하는 검은색 수평선으로 제시되고 있다 . 이분척추증의 요약 발생률은 그 폭이95%의 신뢰구간을 나타내는 다이아몬드 형태로 제시 되었다. 주: * = 하위그룹 메타분석 출처: a (91); b (92); c (93); d (94); e (95); f (96); g (97); h (98); i (99); j (100); k (101); l (102); m (103); n (104); o (105);p (106); q (106); r (107); s (108); t (109); u ((110); (111)); v ((112); (113)); w ((114); (115); (116)); x (117); y (118); z (119); aa (120); ab (121); ac (120).
2. 척수손상의 국제적 상황 27
발생 원인 비외상성 척수손상의 발생 원인에 관해서는 신뢰할 만한 국가 데이터의 수가 적긴 하지만, 여러 연구에서 신생 종양과 척추의 퇴행이 주요 원인임을 보였고, 그다음 원인들로 혈관성 질환과 자가 면역 질환을 제시하고 있다(11, 59, 62, 122–124). 결핵과 기타 감염성 질환이 많이 발생하는 인도, 페루, 스웨덴과 같은 국가에서는 종양을 제외하고 이러한 질환들이 비외상성 척수손상 원인으로서 우세하게 나타났다(123, 125, 126). 다른 연구 상황에서 흔히 조사되기 때문에 이분척추증과 같은 선천성, 유전적 원인으로 발생한 사례들은 이 연구들에서는 수집되지 않았다.
▶ 사망률과 기대 수명 이 부분은 효과적 계획 수립과 자원 배분을 위한 핵심 정보인, 척수손상이 사망 위험도와 기대 여명에 미치는 영향을 설명하고 있다. 척수손상의 감지, 평가, 내원 전 처치, 외상 치료 서비스, 일반적 임상적 치료, 재활 서비스의 향상은 이차적인 문제로 인한 사망 위험의 감소와 더불어 고소득 국가 에서 척수장애인의 기대 수명을 연장시키는 결과를 가져왔다. 여전히 척수장애인은 비 척수장애인 보다 사망 위험이 더 높고, 조기에 사망할 위험도 더욱 높은 편이다. 또한 척수장애인은 일반 비장애인보다 특정 질환에 의한 사망 가능성도 더 크다. 대부분의 경우에, 척수손상 이후 바로 다음 1년 동안 사망 위험이 가장 높고, 저소득 국가의 많은 척수장애인은 예방 가능한 이차적인 합병증 으로 사망에 이르고 있다.
척수장애인은 비 척수장애인보다 조기에 사망한다. 전반적으로, 여러 연구들은 척수장애인이 비 척수 장애인보다 조기 사망의 가능성이 2-5배 정도 높음을 보였다(표 2.4 참조). 척수손상의 영향을 평가 하는 또 한 가지의 방법은 어느 한 사람이 얼마나 긴 시간을 더 살 수 있는가를 나타내는 수치인 기대 수명에 미치는 영향을 고려해 보는 것이다. 척수장애인을 일반 인구와 비교한 연구는 많지 않다. 호주의 한 연구에 따르면, 경수 1–4번 사이 부위에 척수손상을 입은 사람들의 경우, 25세를 기준으로 했을 때 기대 수명이 일반 인구 기대 수명의 단지 70%에 불과했다(그림 2.10 참조) (34). 특히 척수손상 이후 첫해에 척수장애인의 사망 위험이 가장 높다(57, 129).
척수장애인의 사망 위험은 손상 부위와 정도에 달려 있다. 사지 마비 장애인은 하반신 마비 장애인 보다 일찍 사망한다(34, 1127, 130). 한 핀란드 연구에서 표준화 사망률(SMR)이 사지 마비에서는 3.0이었던 반면 하반신 마비에서는 2.3으로 나타났으며, 호주에서는 표준화 사망률이 사지 마비의 경우 2.2에 비해 하반신 마비에서는 1.7로 나타났다(34). 그리고 또한 이 핀란드 연구에서는 불완전 손상 대비 완전 마비 장애인의 사망률이 높았으며, 완전 손상인 경우 하반신 마비 장애인에서는 거의 두 배, 사지 마비 장애인에서는 세 배에 가까운 사망률을 보였다.
28 척수 손상의 국제적 관점
선진국에서는 기대 수명이 1950년 이후 계속 증가하였다. 고소득 국가의 종단 연구들에서는 척수손상 장애인의 기대 수명이 지속적 증가를 보였다. 외상성 척수손상에 대한 미국의 한 연구 에서는 손상 이후 다음 2년 내 사망률이 1973년 부터 2004년 사이 40% 감소한 반면, 손상 2년 이후 사망률은 비슷한 수준을 유지했음을 확인 했다(131). 유사한 결과를 보인 한 연구를 보게 되면, 1981년부터 1998년 사이 외상성 척수 손상의 사망률이 연간 3%씩 감소한 것으로 나타났으며, 특히 남성, 백인, 그리고 자동차 충돌로 인한 상해자들의 사망률이 감소했다 (132). 이러한 진전은 지난 60년 동안 척수 장애인을 위한 임상적 치료와 재활 의료의 발전이 반영된 결과이다. 주: A: 완전마비; B: 손상부위 아래 감각 기능만 마비; C: 손상 부위 아래 불완전 운동 기능; D: 손상 부위 아래 상당한 운동 기능 출처: (34).
(그림 2.10) 호주의 전체 인구 대비 척수장애인의 도달 연령(attained age)별 기대 수명
고소득 국가에서는 척수손상의 이차적인
합병증이 더 이상 척수손상 장애인의 주요 사망 원인이 아니다. 요로성 패혈증(Urosepsis)과 신부 전증(Renal failure) 같은 비뇨기적 합병증은 척수장애인의 주요 사망 원인 중 하나이다. 하지만 선진국에서는 척수장애인의 주요 사망 원인이 폐렴이나 인플루엔자 등의 호흡기 질환과 같은, 일반 인구와 유사한 원인으로 변화하고 있다(11, 50, 130, 133, 134) (표 2.4) 4개국의 외상성 척수손상(TSCI) 표준화 사망률(SMR) 국가 핀란드 노르웨이 에스토니아 호주 출처: (127–129).
지역 헬싱키 호르달란 주, 송노표르다네 주 전국 전국
연도 1976–2005 1997–2001 1997–2001 1986–1997
소아/성인 TSCI 성인 성인과 소아 성인과 소아 성인
SMR 2.7 1.9 5.0 2.1
몇몇 연구에서는 심장 질환, 자살, 그리고 신경계 질환에 의한 사망률이 높게 관찰됐다(11, 50, 127, 130, 133). 그러나 척수장애인은 비장애인보다 이러한 질환들에 의해서 더 높은 빈도로 사망하게 된다. 예를 들어 노르웨이의 한 연구에 따르면 표준화 사망률 1.96으로 일반 인구에 비해 척수손상 장애인의 호흡기 질환으로 인한 사망 위험이 전반적으로 더 높게 나타나고 있다(135). 호주의 한 연구는 원인별 2. 척수손상의 국제적 상황 29
표준화 사망률을 폐렴과 인플루엔자의 경우 17.11, 자살 4.37, 비뇨기계 질환 6.84로 발표하였다. 노르웨이의 한 연구에서는 호흡기 질환, 허혈성(Ischaemic) 심장 질환, 암, 그리고 자살을 가장 흔한 사망 원인으로 꼽았다(57).
저소득 국가에서는 척수장애인이 비뇨기계 합병증과 욕창과 같은 예방 가능한 이차 합병증으로 계속 해서 목숨을 잃고 있다. 저소득 국가에서는 경과 관찰이 지속되는 비율이 낮아 데이터가 얼마 없지만, 입증되지 않은 증거(anecdotal evidence)들을 통해 비뇨기계 합병증이 여전히 사망의 일반 원인이 되고 있음을 알 수 있다(136). 저소득 국가에서는 적절한 의료 서비스가 존재하지 않아, 치료받지 못한 욕창의 치명적 감염이 흔한 사망의 원인이 되고 있다(45, 136).
척수장애인의 사망률은 의료 보건 시스템, 특히 응급 치료 시스템의 역량에 의해 상당히 영향을 받는다. 손상 이후 이송과 입원 시기가 생존에 영향을 미치는 중요한 요인이다. 척수손상 이후 24시간이 생존에 있어 가장 중요하다. 나이지리아의 한 연구에서는 6주 이후 사망률의 예측 인자로 이송 중 웅크린 자세(오즈비(Odds ratio) 23.52)와 상해를 입은 후 24시간 또는 이후에 병원에 도착(오즈비 5.48)하는 것이 있음을 발견하였다 . 캐나다와 미국 같은 고소득 국가에서의 전반적인 입원 중 사망률이 각각 11.6%와 6.1%인 (137, 138) 반면 시에라리온과 나이지리아는 평균 사망률이 각각 29%와 35%로 나타났다. 이것은 척수손상으로 의심되는 상황에 대한 신속한 인지, 빠른 평가, 적절한 관리의 중요성을 강조 하고 있다(139). 호주에서 구급차로 이송되어 척수손상 병동에 입원한 환자 324명을 대상으로 한 대규모의 후향적 연구에 따르면, 이들이 척수손상 치료 병동으로 이송될 수 있었던 것은 구급차 요원이 척수손상의 주요한 생리학적 징후를 감지할 수 있도록 훈련받았기 때문이었던 것으로 나타 났으며, 이곳에서 거의 88%는 척수손상으로 진단받았던 것으로 나타났다((75), (박스 2.2 참조)). 박스 2.2. 척수손상 직후의 적절한 입원 전 관리는 사망률과 이차 합병증을 낮추고 있음. 구급차로 이송되어 척수 병동에 입원한 324명의 환자를 대상으로 호주에서 대규모의 후향적 연구가 2004년부터 2008년까지 진행되었다. 대부분의 손상의 경우 손상 현장에서 생리학적 활력 징후를 검사한 결과 정상 범위 내에 들었으나, 부상의 성격 때문에 구급차 요원은 잠재적 척수손상으로 다루었다. 이후 척수 병동에 입원한 88%의 환자가 척수손상으로 진단받으며 이 프로토콜은 많은 생명을 살리는 데 기여했다. 환자가 손상 병동에 도착하는 시간은 12시간 이내였다. 그러나 만약 처음에 일반 외상 센터로 이송된 경우, 환자가 척수손상 전문가에게 치료를 받기까지 24시간 이상이 걸리는 경우도 있었다. 그리고 이런 경우에 바로 척수 병동으로 입원한 환자보다 이차 합병증에 걸릴 확률이 2.5배 이상 높았다. 또한 이 연구에서 드러난 심각한 점은 낮은 곳에서 추락해 생긴 손상의 경우, 대부분이 노인 환자였으며, 구급 요원들이 이들을 잠재적 척수손상으로 치료할 가능성이 상당히 낮다. 이로 인해 병원 내 이송이 늘어나고 이들 중 절반은 척수 병동에 24시간 이내에 도착하지 못해 상당히 높은 사망 위험에 노출되고 이차 합병증에 시달린다. 노령화의 증가와 낮은 지역에서 추락한 노인 척수손상 발생이 증가하는 상황을 고려해 볼 때, 이 연구는 낮은 지역에서 추락해 손상을 당한 노인들은 반드시 잠재적 척수손상으로 더욱 조심스럽게 다루어야 함을 제시하고 있다. 출처: (75).
30 척수 손상의 국제적 관점
일반적으로 입원 중 사망률은 척수장애인의 생존을 위해서는 양질의 치료가 중요함을 반영하고 있으며, 이러한 사망률이 한 국가의 전반적인 자원 수준으로 연결될 수도 있다.
▶ 척수손상의 비용 척수손상의 직간접 비용은 척수손상의 경제적, 사회적 영향을 평가하는 데 있어서 중요하다. 직접
비용에는 의료와 재활 서비스, 비용이 더 드는 특별 교통수단, 특별 식이, 개인 활동 보조인 등이 포함되며, 경제적·비경제적 비용으로서의 간접 비용에는 조기 사망이나 장애로 인한 생산성 소실, 사회적 고립과 스트레스가 포함될 수 있다. 척수손상의 비용은 다음 요인들에 크게 영향을 받는다. • 초기 손상 상태나 기저의 건강 상태. 외상성 척수손상의 경우, 비용은 손상 부위와 정도에 영향을 받고 (140-144) 비외상성 척수손상의 경우, 기저의 건강 상태의 정도에 따라 영향을 받는다(145, 146). • 치료 시기의 적정성, 특히 손상 후 처음 적절한 의료적 처치를 받기까지 걸린 시간. • 초기 입원 (146)과 이차 합병증의 예방 및 치료에 실패해 재입원한 기간을 포함한 병원 입원 기간. 근거에 따르면 비용에 있어서 성별로 인한 차이는 없는 것으로 나타남 (147). • 휠체어나 인공호흡기를 포함한 직접 의료 비용.
국가 간 비용 데이터를 비교하는 데 있어서 주의가 필요하다. ‘척수손상의 추정 비용’의 국가 간 직접 비교는 어렵다. 이는 직접 및 간접 비용의 다양한 범주들이 사용되며, 비용의 추정은 다양한 통계 기법과 다양한 질의 데이터에 따라 달라지기 때문이다. 심지어 한 국가 내에서도, 직접 의료 비용을 추정치는 데이터의 출처에 따라 다르게 나타난다(148-150). 지역적 또는 세계적인 측정치가 추산될 수 없더라도, 활용 가능한 데이터로부터 척수손상의 비용에 대한 전반적 특성을 다음과 같이 서술할 수 있다. 1. 손상의 부위와 정도는 비용에 중요한 영향을 미치며, 높은 비용은 척수의 높은 부위 손상과 관련이 있고 (예: 사지 마비 대 하지마비), 불완전 척수손상과 비교해 완전 척수손상이 높은 비용과 관련되어 있다. 2. 비외상성 척수손상 비용은 대부분 발생 연령의 이유로 외상성 척수손상 비용보다 낮은 경향이 있다. 3. 직접 비용은 척수손상 발생 첫해에 가장 높고 이후로 시간이 경과함에 따라 상당히 감소한다. 4. 간접 비용, 특히 생산성 손실은 직접 비용을 초과할 수도 있다. 5. 이 비용의 대부분을 척수장애인이 부담하고 있다.
위에 지적된 부분들을 아래에서 좀 더 상세히 다루겠다.
1. 척수손상의 부위와 정도가 비용에 중요한 영향을 미친다(134. 151, 152). 사지 마비는 하지마비 보다 더 높은 비용과 연관되어 있다. (42, 153, 154). 미국의 국립 척수손상 통계 센터의 2013년의 데이터에 따르면, 25세에 척수손상을 당한 경우, 평생 소요되는 비용이 하지마비의 경우 230만 달러인 것에 반해 상부 경수의 사지 마비의 경우는 460만 달러인 것으로 추정하였다. 호주에서는 발생 건수당 평생 소요되는 비용을 하지마비의 경우는 5백만 호주 달러, 사지마비의 경우는 950만 호주 달러로 추정했다(154). 또한 이 연구에서는 치매, 다발성 경화증, 뇌성 마비, 양극성 장애와
2. 척수손상의 국제적 상황 31
같은 다양한 신경학적 상태와 비용을 비교 한 결과, 사지마비의 경우 다른 조건들과 비교했을 때 2-20배 높은 비용과 연관되어 있음을 밝혀냈다(154). 손상 정도와 관련해 서는, 몇몇 연구들에서 완전 척수손상에 대한 비용이 불완전 척수손상에 비하여 높 음을 발견하였다. 한 예로, 입원, 의사 진 료 서비스 , 홈 케어 , 장기 요양 관리를 포 함한 평균 직접 비용에 관한 캐나다 자료에 따르면, 손상 후 첫해의 척수손상에 기인하 는 평균 비용(attributable costs)은 완전 척수손상 환자 한 명당 121,600달러(2002 년 캐나다 달러 기준) 그리고 불완전 척수 손상 환자 한 명당 42,000달러였다. 이후 5 년간 완전, 불완전 척수손상 장애인의 연간 지출 비용은 각각 5,400과 2,800 캐나다 달러이다((144), (그림 2.11 참조)). 출처 (144).
(그림 2.11) 1992-1994년 사이 캐나다 앨버트의 척수손상 장애인의 부위와 정도에 따른 연간 명당 직접 의료 비용 (2002년 캐나다 달러 기준)
2. 비외상성 척수손상의 비용은 대체적으로 발생 연령으로 인해 외상성 척수손상의 비용보다 낮은 경향이 있다. 비외상성 척수손상은 대개 일을 더 이상 하고 있지 않아 남은 삶의 기간 동안 초래 되는 간접 비용이 더 적은 노년층에서 발생한다. 이 상황에 대한 예외는 이분척추증으로, 영아기에 발병할 뿐 아니라 발달과 행동 서비스 그리고 가정 의료 서비스에 높은 비용이 지출되기 때문이다 (155-157).
3. 직접 비용은 척수손상 발생 첫해에 가장 높고 이후로 시간이 경과함에 따라 상당히 감소한다 (134, 151, 152). 미국의 국립 척수손상 통계 센터가 추정한 2013년 치료 비용이 (표 2.5)에 제시되어 있다. 초기 직접 건강 관리 비용이 줄어들기 시작하여도 지속적으로 소요되는 보조 기기와 장비, 그리고 단기 보호(respite care), 활동 보조, 지역 사회 지원 서비스와 같은 장기 요양 비용이 높게 유지 되는 경향이 있다(154). (그림 2.12)는 호주에서의 사지 마비 장애인의 비용이 변화하는 양상을 보여 준다.
4. 간접 비용이 직접 비용을 초과할 수도 있다. 비록 직접적인 의료와 재활 비용이 비싸고, 점차 증가하고 있음에도 (158), 간접 비용, 특히 남은 생애에 걸친 생산성 손실과 관련된 비용은 모든
32 척수 손상의 국제적 관점
직접 비용을 훨씬 초과할 수 있다(159). 나이지리아에서 실시된 34명의 척수손상 환자를 대상으로 한 급성기 치료 비용(6주 동안) 연구에 따르면, 수술, 입원 비용, 투약, 검사 비용을 포함한 의료 비용과 간호 비용을 합한 평균 239달러의 직접 치료 비용과, 수입 감소, 차량 교체 및 수리 비용의 총합을 포함한 1,360달러에 달하는 간접 비용 사이에 6배 정도의 차이가 나타났다(42). 전체 치료 비용은 환자의 연간 수입의 50% 이상이 넘는 것으로 나타났다(42).
출처 (154). © 2004–2008년 동안 TAC 데이터를 기반으로 한 VNI Access Economics Pty Limited에서 빅토리아 신경외상(VNI)에 제출한 2009년 6월 보고서. 제목 “호주의 척수손상과 외상 두뇌 손상의 경제적 비용”. 위에 인용된 문건은 WHO의 공식 출판물이 아님. 이 자료와 다른 관련 출판물은 아래 사이트(www.tac.vic.gov.au.) 에서 무료로 확인할 수 있음.
(그림 2.12) 시간 경과에 따른 사지 마비 환자의 항목별 연간 평균 직접 비용 (표 2.5) 손상 정도에 따른 외상성 척수손상의 평균 연간 비용 평균 연간 비용 (2013 US 달러) 첫해 높은 수준의 사지 마비(경수1–4번) 낮은 수준의 사지 마비(경수5–8번) 하지마비 어떤 부위의 불완전 운동 기능 출처: (153).
손상 정도 1,044,197 754,524 508,904 340,787
이후 매년 181,328 111,237 67,415 41,393
5. 대부분의 비용은 척수장애인이 부담하고 있다. 빅토리아 신경 외상 계획(Victorian Neurotrauma Initiative)이 추정한 호주의 척수손상의 연간 총비용은 약 20억 호주 달러(사지 마비 13억 달러, 하지마비 6억8천9백70만 달러)이며, 이 중 40%는 척수장애인 스스로 부담하고 있었고, 주 정부가 44%를, 연방 정부가 추가적으로 10%를 부담하고 있었다(154).
2. 척수손상의 국제적 상황 33
척수손상에 대한 데이터와 근거
척수장애인에 관한 지식을 넓혀 나가고, 척수장애인의 예방, 지원, 치료를 위한 근거 강화는 중요하다. 이 섹션에서는 부록 B에서 발견된 데이터의 한계점에 대해 더욱 상세히 설명함과 더불어 척수손상 데이터 및 근거에 관한 문제점들과 고려 사항들을 논의한다. 척수손상에 관한 데이터는 척수손상 특이적인 정보 출처부터 획득할 수도 있고 또는 외부 손상 원인과 연계된 일반적인 장애 데이터 수집과 관련해 수집할 수도 있다. 정보 수집을 위한 소스, 데이터 형태, 기준과 도구는 아래에서 논의하고 (표 2.6)에 기술하였다. (표 2.6) 척수손상 정보 수집을 위한 소스, 데이터 종류, 기준/도구 소스 의료 기록 데이터 종류 손상 연령 성별 손상 손상의 신경학적 부위와 정도(하지마비, 사지 마비, 완전, 불완전) 치료 비용 손상 연령 성별 인종, 민족 직업 상태 병인 퇴원시 손상의 신경학적 부위와 정도(하지마비, 사지마비, 완전, 불완전) 퇴원 이후 거주 형태 병원 입원 기간 치료 비용 사망 원인 센서스 국가 건강 사회 조사 국가 장애 조사 손상 연령 성별 손상의 병인 퇴원시 손상의 신경학적 부위와 정도 (하지마비, 사지마비, 완전, 불완전) 직업 상태 청구 비용 수집을 위한 기준/도구 국제 질병 분류 기호(ICD) 미국(ASIA)/국제 척수 손상 학회(ISCoS)의 국제 척수 손상 데이터 세트 보건 계정 체계(SHA)
중앙 등록 시스템
손상 외인에 관한 국제 분류(ICECI) 아시아/국제 척수 손상 학회(ISCoS)의 국제 척수 손상 데이터 세트 보건 계정 체계(SHA) 국제 질병 분류 기호(ICD)
국가 총조사 보험 회사
워싱턴 그룹의 6가지 질문(인구 조사 부분만) WHO 장애 평가 스케줄 WHO와 세계은행의 장애 모델 조사
34 척수 손상의 국제적 관점
▶ 데이터 소스(출처) 보건 의료 기록(Health settings). 매우 다양한 보건 의료 기록이 척수손상의 데이터의 출처가 될 수 있는데, 병원 입원 환자의 기록, 구급차 서비스 또는 응급실 정보, 일차 진료 기관과 주치의 방문 기록으로부터 도출한 환자 정보들을 포함한다. 의료 기록 데이터는 이러한 서비스를 이용한 대상에만 국한되어, 국가의 전체적인 척수장애인에 대한 대표성을 가질 수는 없다.
척수손상 장애인 중앙 등록 시스템. 몇몇 고소득 국가들에서는 척수손상 정보의 수집, 관리, 분석을 위한 과학적인 기준을 적용한 중앙 척수손상 등록 시스템을 구축하였다. 캐나다의 릭한센 척수손상 등록 시스템(Rick Hansen Spinal Cord Injury Registry)(박스 2.3 참조), 호주 척수손상 등록 시스템 그리고 미국의 국립 척수손상 통계 센터가 운영하는 척수손상 모델 데이터베이스 등이 이에 해당한다(163, 164). 이러한 등록 시스템은 다양한 수준의 대표성을 보유하고 있다. 아직까지 저/중소득 국가는 척수손상 장애인 중앙 등록 시스템을 가지고 있지 않다. 박스 2.3. 척수손상 등록 시스템의 예 릭한센 척수손상 등록 시스템(Rick Hansen Spinal Cord Injury Registry)은 캐나다 전역 31곳의 주요 외상 및 재활 시설 입원 환자 정보 등록 데이터베이스 시스템이다. 현재는 비외상성 척수손상과 불완전 외상성 척수손상(D) 사례가 국가 등록 시스템이 적용되지 않는 지역의 병원에서 종종 치료가 진행되고 있기 때문에 이 등록 시스템 안에 취합 되지 않고 있다. 이 등록 시스템은 캐나다 연방 정부와 주 정부의 자금으로 운영되며, 각 등록처와 릭한센 재단이 함께 참여하고 있다. 지속가능한 등록 시스템의 핵심인 지속적이며 신뢰할 수 있는 재정적 기반을 위해 다양한 펀딩 후원처에서 자금 지원을 하고 있다. 각각의 참여 시설은 환자를 모집하고 동의를 구한 후에, 데이터를 수집해 익명의 형태로 중앙 시스템에 저장한다. 사회통계학적 요소, 의학 기록, 손상 세부 사항, 진단과 개입, 신경학적 손상, 합병증, 환자 진술 기록 정보와 더불어 입원 전, 급성기와 입원 시 재활, 지역 사회 복귀 이후 등 총 260가지의 데이터 정보를 수집한다. 대상자들은 퇴원 후 1, 2, 5년 그리고 10년의 시점에 담당자와 접촉해 관리를 받고, 그 이후에는 5년마다 설문지를 작성한다. 데이터의 정보 요소는 국제 척수손상 코어 데이터 세트(Core Data Sets) 및 척수손상의 신경학적 분류를 위한 국제 기준 (ISNCSCI)과 연동되어 있고, 중복 방지를 위해 다른 등록 시스템과 연결되어 있다. 등록 시스템은 다음을 통해 임상 치료를 발전시켜 왔다. ∙결과의 표준화 및 결과 비교 향상을 위한 임상 절차의 코드화. ∙시간 경과에 따른 직원의 자격 요건에 관한 경향 확인 ∙지역 사회 후속 평가 기간에 직원과 환자에게 정보 제공. 등록 시스템은 또한 다음을 통해 임상 연구를 촉진해 왔다. ∙연구 참여에 대한 개인의 관심 확인. ∙임상 시험의 추가 정보 제공을 통해 응답자의 부담 완화. ∙임상 시험에 참여하는 시설에 타당성 평가 제공. ∙환자의 캐나다 보건 의료 시스템 이용 상황 및 주별로 제공되는 관리 서비스와 관리 비용의 차이 제시. 출처: (160, 161).
국가 설문 조사. 국가 장애 데이터는 인구 총 조사 또는 총인구의 보건 및 사회적 설문 조사들을 통해 얻어지는데, 이들은 모두 자기 보고 형태로 시행된다. 이러한 조사가 주로 가동성에 관련한 2. 척수손상의 국제적 상황 35
질문만을 다루고 있지만, 손상이나 건강 상태에 따라 데이터가 나눠져 있지 않았다면, 이런 조사는 척수손상 특이적 정보와 관련해서는 제한적인 가치만을 갖게 될 것이다. 국가 데이터 수집을 도와 줄 수 있는 몇 가지 도구가 현재 존재하고 또한 개발 중인데, 대표적으로 장애 통계에 관한 워싱턴 그룹(Washington Group on Disability Statistics)에서 개발한 질문들, WHO의 세계 보건 설문 조사, 그리고 WHO와 세계은행(World Bank)에 의해 현재 개발되고 있는 장애 모델 조사(Model Disability Survey)의 질의들이 있다.
보험 회사는 병약한 건강 상태, 자동차 충돌 사고, 직업 및 스포츠 활동에 의한 부상 같은 다양한 위험 요인에 대해 보험을 제공한다. 보험 회사는 신규, 기존 척수손상의 사례를 포함해 주어진 위험 요인을 고려해 미래 보험 청구율 예측을 위해 통계 자료를 수집하고 사용한다. 이러한 데이터는 보험금 결정을 위한 기본 자료로 사용되기 때문에 획득하기가 어려울 수 있다.
▶ 정보 기준 척수손상과 관련된 세 가지 주요 건강 정보 기준이 있다. 가장 광범위하게 사용되는 표준 진단 도구는 국제 질병 분류(International Classification of Diseases: ICD)로서, 이는 사망 진단서, 의무 기록을 포함한 보건 및 생명 관련 기록과 질병 및 그 외의 건강 문제들을 분류하기 위해 사용 되고, 질병의 발생률과 유병률을 모니터하기 위해 사용된다. 또한 많은 국가에서 ICD 기반 기록을 비용 청구와 자원 배분 결정에 사용하고 있다(165). 상해 외인에 관한 국제 분류(International Classification of External Cause of Injury: ICECI)는 상해를 입는 메커니즘, 상해 발생 원인 물체나 물질, 발생 장소, 상해를 입은 당시 활동, 인적 의도의 역할 , 알코올과 기타 향정신성 약물의 사용 등을 포함한 상해 발생 상황을 기술하고 측정하며 모니터하기 위해 사용된다 . 또한 ICECI는 폭력 , 교통 , 장소 , 스포츠 , 직업과 관련된 상해 발생 데이터를 수집하기 위한 다른 모듈을 보유하고 있다. 보건 계정 체계(System of Health Accounts: SHA)는 공공, 민간 분야 적용을 위해 중재를 통해 만들어진, 국제적으로 비교 가능한 건강 재정 계정을 수집하기 위한 표준화된 프레임워크이다(166). 또한 척수손상과 관련한 특이적인 세 가지의 기준이 있다. 미국 척수손상 협회(American Spinal Injury Association: ASIA)의 척수손상의 신경학적 분류를 위한 국제 기준(International Standards for Neurological Classification of SCI)은 척수손상의 신경학적 부위와 정도를 평가하고 분류하 기 위한 기준이다. 이 분류 시스템은 ASIA 손상 척도(AIS A-E), 운동 점수(근육 기능의 신경학적 진찰을 기반), 감각 점수(감각 기능의 신경학적 진찰을 기반)의 세 가지 요소를 담고 있다. 최근에 미국 척수손상 협회(ASIA)와 국제 척수손상 학회(ISCoS)가 공동으로 개정한 이 기준은 임상 치료와 연구 수행에 있어 신뢰할 수 있는 데이터를 제공한다(167-170).
36 척수 손상의 국제적 관점
국제 척수손상 학회는 환자, 센터, 국가 간에 손상과 결과들의 비교를 촉진시키기 위해 국제 척수손 상 데이터 세트(SCI Data Sets)를 개발했다(171, 172). 이 데이터 세트는 국제 척수손상 코어 데이터 세트(SCI Core Data Sets) (173)와 국제 척수손상 비외상성 데이터 세트 (174)를 포함하고 있다. 이는 척수손상의 병인과 이의 보고를 포함한 기본적인 역학 데이터의 표준화에 있어 가장 기초적인 데이터 세트이다(175). 이와 관련하여 의미가 있는 것이 척수손상의 전 세계적 역학적 경향의 데이터 보고의 표준화를 위한 ISCoS initiative(국제 척수손상 학회 계획)이다(176). 척수손상 ICF 코어 세트(ICF Core Sets for SCI)(포괄적인 것과 간략한 것)는 척수손상에 대한 임상 및 연구 활동에 사용될 수 있는 국제 데이터 세트이다(177). 급성기 이후와 장기 요양에 대한 코어 세트들이 2010년에 다른 장애 통계 영역과의 비교를 보다 확실히 하기 위해 국제 기능 장애
건강 분류 (International Classification of Functioning, Disability and Health: ICF)를 이용해 개 발되었다(177-179).
데이터와 관련된 문제점들과 고려 사항
척수손상에 관한 데이터가 부족한 상황을 고려하면, 전 세계를 기반으로 보다 많은 데이터 수집에 대한 심각한 필요성이 제기된다. 그뿐만 아니라 데이터의 질 또한 향상되어야 한다. 다음 내용에서는 척수손상 데이터 수집 관련한 일반적인 몇 가지 한계점들에 대해 살펴보도록 하겠다.
▶ 데이터의 정의와 표준화 척수손상의 사례 정의와 포함 기준에 있어 다양성이 존재하며, 이는 국가 간에 그리고 국가 내에서 다양한 상황 간 데이터 비교 가능 여부에 영향을 미치게 된다. 일반적인 의학적 정의는 임상적으로는 기능적이나 역학을 조사하기 위해 필요한 포괄성이 부족할 수도 있다. 그 예로 “척수손상은 척수에 부상을 당하여 감각과 운동 조절 기능 손실이 발생하는 것이다.” (180)의 경우가 있다. 미국 질병 통제 센터(US Centers for Disease Control: CDC)에서는 “일시적인 혹은 영구적인 감각 손실, 운동 기능 손실 혹은 장/방광 기능 장애를 유발하는 척추관 내 신경 구성 성분의 급성 외상성 병변”을 임상적 척수손상의 정의로 사용하고 있으며, 이는 질병이나 퇴행적 변화보다는 손상을 유발했던 외부적 사건들과 관련된 외상성 사례들을 포함한다. 따라서 이 정의에서는 추간판 질환, 척수손상이 없는 척추체의 손상, 신경근의 결출 및 손상과 척추관 바깥쪽의 말초 신경 손상, 암, 척수의 혈관성 질환, 기타 비외상성 척수손상 질환들을 배제하고 있다(181).
2. 척수손상의 국제적 상황 37
▶ 과소 보고(Underreporting) 척수손상과 척수손상으로 인한 사망 사례의 과소 보고는 저소득/중간 소득 국가에서 중대한 문제이다 (130, 182, 183). 대부분의 심각한 외상들의 경우와 같이 외상성 척수손상은 사망률이 상당히 높다. 만약 응급 외상 치료 서비스에 ICD 코드에 의한 사망 보고가 의무화되어 있지 않거나 이 서비스가 응급 상황 시에 무시된다면, 이 정보는 사라질 것이고 결국에는 인위적으로 발생률과 사례 사망률을 낮추는 결과로 이어질 것이다(186). 심지어는 고소득 국가에서도, 유병률과 발생률 추정을 위한 신뢰할 만한 정보는 수집하기가 어려울 수 있다. 세계적으로 척수손상 등록 시스템을 가진 나라는 소수이며, 존재하는 등록 시스템의 포함 범위도 불완전한 상황이다. 심지어 척수손상에 대한 훌륭한 통계를 가지고 있는 나라들도 외상성 척수손상에만 데이터의 초점을 맞추는 경향이 있고, 비외상성 척수손상 사례는 상당히 과소 보고 되고 있다(89). 외상성 척수손상 등록 시스템 같은 비외상성 척수손상 등록 시스템을 운영하는 것은 비용과 시간이 상당히 많이 들고 실행이 어려울 수 있다. 그 이유는 다양한 병인으로 인하여 비외상성 척수손상 당사자들의 경우 다각적 치료 서비스를 받는 환경에서 치료와 재활 치료를 받고 특화된 척수손상 재활 서비스를 받지 않기 때문이다(88).
▶ 기타 이슈 그간에 연구들을 통해 척수손상 데이터 및 근거와 관련된 그 외의 몇 가지 문제점들이 밝혀졌다. 이 내용에는 다음의 문제들을 포함하고 있다. • 의무 기록 관리, 개인 기록 내에 부정확한 정보나 정보의 소실이 발생하는 것. 예를 들어, 신경학적 증상이 없는 척추 골절이나 타박상이 척수손상으로 코딩되는 경우, 부정확한 ICD 코딩은 척수손상 사례 과대 보고 (over-reporting)의 원인이 된다(20). • 대부분의 발생률과 유병률에 관한 데이터는 하나의 병원에서 기반한 설문 조사로부터 온 경우가 많은데, 이것을 해당 국가의 전반적 상황으로 일반화하는 것이 적절하지 않을 수 있다. • 도구의 적절성. ICD-10 코드는 구체적으로 척수손상을 정의하지 못하지만, 몇몇 코드가 골절, 외상성 파열, 척추체 전위, 완전/불완전 손상을 정의하는 데 사용되고 있다. 실제로 이런 코드를 이용하여 수집된 데이터 는 역학 연구에 신뢰할 만한 자료가 되지 못한다(187). • 일관성 없는 용어의 사용. 예를 들어 이분척추증에 대한 학술 자료. • 상대적으로 작은 표본 크기. • 발생률과 유병률을 결정하기 위해 사용한 방법의 과학적 건전성. • 척수손상 원인에 대한 노출 정도에 대한 데이터의 부족.
38 척수 손상의 국제적 관점
결론과 제안
이 장에서는 전 세계에서 활용할 수 있는 가장 좋은 데이터를 사용해 척수손상의 발생률, 유병률, 경향, 비용에 대한 정보를 제공하였다. 하지만 데이터의 질과 세계의 몇몇 지역에서의 데이터의 부재로 인해 이에 대한 결론은 아직까지 유보적이다. 신뢰할 수 있는 데이터와 근거는 영향을 받은 사람들의 수와 그들의 삶에 끼친 영향을 확인하고, 원인을 분석하고, 개입 전략을 개발 및 평가하고, 정책 입안자와 정책 결정자들에게 정보를 제공하며 인식을 개선하는 데 있어 중요하다. 신뢰할 만한 정보가 없다면, 예방과 의료적, 사회적 조치에 대한 우선순위를 합리적으로 혹은 만족스럽게 결정할 수 없다. 연구, 임상적 치료와 정책 수립에 적용될 수 있고, 특히 장애인 권리 협약 내용 이행의 국가별 모니터링에 척수손상 장애인이 완전히 포함될 수 있도록 하는, 보다 확고하고, 믿을 수 있고, 비교 가능하며, 포괄 적인 척수손상 데이터에 대한 전 세계적 요구가 있다. 이런 맥락에서, 다음의 제안 내용은 척수장애인 데이터의 질과 이용 가능성을 높이는 데 기여할 수 있을 것이다.
▶ 데이터 수집에 있어 국제 기준을 사용함으로써 데이터 비교 능력을 향상시킨다 척수손상의 신경학적 분류를 위한 국제 기준(ISNCSCI)뿐만 아니라 WHO의 손상 외인에 관한 국제 분류(ICECI), 국제 기능 장애 건강 분류(ICF)는 모든 건강 및 장애 데이터의 보편적인 틀을 제공하기 위해 꾸준히 사용되어야 한다. 국제 척수손상 학회(ISCoS) 홈페이지에서 무료로 이용할 수 있는 국제 척수손상 데이터 세트는 척수장애 데이터 비교 가능성 향상에 더욱 기여하게 될 것이다. 각국이 행할 수 있는 내용으로는, • 모든 건강 데이터 수집에 관한 국가의 데이터의 수집에 ICECI와 ICF를 표준으로 공식 채택한다. • 반드시 모든 척수손상 데이터가 ICECI의 용어와 ICF의 장애 모델을 사용하여 수집되도록 한다. • 모든 척수손상 데이터가 국제 척수손상 코어 데이터 세트를 최소 기준으로 적용해 보고되도록 한다.
▶ 국가 척수손상 통계 시스템 개선 척수손상 데이터를 수집하는 최선의 방법은 척수손상 등록 시스템을 통하여 병원이나 기타 의료 서비스 기관으로부터 나온 데이터를 바로 모아 미국의 국립 척수손상 통계 센터(NSCISC)와 같이 정부의 권한 아래 가장 관리가 잘되는 중앙 데이터뱅크로 집중화시키는 것이다. 등록 시스템은 예방 프로그램 및 척수손상에 대한 기타 정책적 대응에 중요한 척수손상 발생 경향과 척수손상 장애인의 요구를 확인하는 데 꼭 필요한 종단 데이터를 제공할 수 있다.
2. 척수손상의 국제적 상황 39
척수손상 등록 시스템이 없다면, 다음의 전략이 데이터 수집 향상에 상당한 도움이 될 것이다. • 국제적으로 비교 가능한 척수손상 정보를 국가 내의 건강과 장애 데이터 수집 시스템 내에서 수집하며 , 데이터를 발생률 경향 분석을 위해 필요한 표준화된 항목별(최소한 성별, 연령, 병인)로 세분화가 가능하게 한다. • 척수손상 데이터를 인터넷상에 검색 가능한 연간 보고서 형태로 제작해서, 누구나 쉽게 이 데이터에 접근할 수 있도록 한다. • 병원과 기타 건강 관리 기관에서 최소한의 추가 비용을 들여 적절한 기록 관리와 국제적인 데이터 기준에 기반한 포맷을 사용하여 척수손상 데이터를 수집하도록 격려, 지원한다. • 인구 총 조사나 국가 가족 건강 조사와 같은 총인구 보건 및 장애 조사, 그리고 일반적인 사회 경제 조사에 척수손상 관련 질문을 포함시킨다. • 지진과 같은 자연재해 발생 이후에 특이적인 설문 조사를 실시해 척수손상 특이적 데이터를 수집한다. • 국제 척수손상 학회나 기타 척수손상 전문가 기관의 자원을 이용해 비외상성 척수손상 표준 기록 방식과 외상성/비외상성 척수손상을 모두 포괄할 수 있는 척수손상 등록 시스템의 개발 가능성을 타진해 본다.
▶ 척수손상 연구를 장려하고 향상시킨다 확고한 지역 데이터를 마련하기 위해서 모든 지역의 국가들은 특히 종단 연구나 코호트 연구와 같은 척수손상 연구를 독려하고 연구의 질 향상을 위한 방안을 모색해야 한다. • 척수손상에 대한 인식을 개선하고 척수손상 연구에 대한 젊은 보건 연구자들의 관심을 이끌어내기 위해 의료 와 관련 보건 직종의 커리큘럼에 척수손상 주제를 반드시 포함시켜야 한다. • 연구자에게 예방 프로그램을 책임지는 기관과의 협력을 장려하여, 발생률 데이터와 함께 예방 전략에 대한 정보를 제공하고 예방 캠페인 모니터링과 평가 과정에 참여하도록 한다. • 직접/간접 척수손상의 비용을 확인, 표준화할 수 있는 포괄적인 틀을 개발해야 한다. 그런 후에 이런 데이터 항목은 척수손상의 사회적 비용에 대한 이해를 높이기 위해 행정적, 국가적 데이터 수집 체계에 편입되어야 한다. • 척수손상의 경험에 대한 데이터를 수집하는 설문 조사의 질문들과 기타 데이터 수집 전략을 고안할 때 척수 손상의 영향을 직접적으로 받았던 사람들을 포함시킨다. 수집된 데이터는 이미 존재하는 척수손상 데이터 세트와 연동시킬 수 있다. • 발생률, 생존율, 유병률, 병인, 보건 의료 관리 전략 측면의 근거 기반 강화를 위해 비외상성 척수손상 연구에 대한 지원이 확대되어야 한다.
▶ 참고 문헌 1. Noonan VK et al. Incidence and prevalence of spinal cord injury in Canada: a national perspective. Neuroepidemiology, 2012, 38:219-226. doi: http://dx.doi.org/10.1159/000336014 PMID:22555590 2. Knutsdottir S et al. Epidemiology of traumatic spinal cord injuries in Iceland from 1975 to 2009. Spinal Cord, 2012, 50:123-126. doi: http://dx.doi.org/10.1038/sc.2011.105 PMID:21946442 3. Hagen EM et al. A 50-year follow-up of the incidence of traumatic spinal cord injuries in western Norway. Spinal Cord, 2010, 48:313-318. doi: http://dx.doi.org/10.1038/sc.2009.133 PMID:19823192 4. Rahimi-Movaghar V et al. Prevalence of spinal cord injury in Tehran, Iran. The Journal of Spinal Cord Medicine, 2009, 32:428-431. PMID:19777865 5. Dahlberg A et al. Prevalence of spinal cord injury in Helsinki. Spinal Cord, 2005, 43:47-50. doi:
40 척수 손상의 국제적 관점
http://dx.doi.org/10.1038/sj.sc.3101616 PMID:15520842 6. O’Connor PJ. Prevalence of spinal cord injury in Australia. Spinal Cord, 2005, 43:42-46. doi: http://dx.doi.org/10.1038/sj.sc.3101666 PMID:15326472 7. New PW et al. Prevalence of non-traumatic spinal cord injury in Victoria, Australia. Spinal Cord, 2013, 51:99-102. doi: http://dx.doi.org/10.1038/sc.2012.61 PMID:22665222 8. Ronen J et al. Survival after nontraumatic spinal cord lesions in Israel. Archives of Physical Medicine
and Rehabilitation, 2004, 85:1499-1502. doi: http://dx.doi.org/10.1016/j.apmr.2003.11.015 PMID:15375824 9. Tuğcu I et al. Epidemiologic data of the patients with spinal cord injury: seven years’ experience of a single center. Ulusal Travma Ve Acil Cerrahi Dergisi = Ulusal Travma Ve Acil Cerrahi Dergisi = Turkish Journal of Trauma & Emergency Surgery; TJTES, 2011, 17:533-538. doi: http://dx.doi.org/ 10.5505/tjtes.2011.95676 PMID:22290007 10. Costacurta MLG et al. Epidemiological profile of a pediatric population with acquired spinal cord injury from AACD: Sao Paulo/Brazil. Spinal Cord, 2010, 48:118-121. doi: http://dx.doi.org/10.1038/ sc.2009.130 PMID:19806161 11. Garshick E et al. A prospective assessment of mortality in chronic spinal cord injury. Spinal Cord, 2005, 43:408-416. doi:http://dx.doi.org/10.1038/sj.sc.3101729 PMID:15711609 12. McCammon JR, Ethans K. Spinal cord injury in Manitoba: a provincial epidemiological study. The
Journal of Spinal Cord Medicine, 2011, 34:6-10. doi: http://dx.doi.org/10.1179/107902610X12923394765733 PMID:21528620 13. Sabre L et al. High incidence of traumatic spinal cord injury in Estonia. Spinal Cord, 2012, 50:755-759. doi: http://dx.doi.org/10.1038/sc.2012.54 PMID:22565551 14. Perez K et al. Incidence trends of traumatic spinal cord injury and traumatic brain injury in Spain, 2000–2009. Accident; Analysis and Prevention, 2012, 46:37-44. doi: http://dx.doi.org/10.1016/j.aap. 2011.12.004 PMID:22310041 15. Albert T et al. Rehabilitation of spinal cord injury in France: a nationwide multicentre study of incidence and regional disparities. Spinal Cord, 2005, 43:357-365. doi: http://dx.doi.org/10.1038/ sj.sc.3101717 PMID:15741980 16. O’Connor P. Incidence and patterns of spinal cord injury in Australia. Accident; Analysis and
Prevention, 2002, 34:405-415. doi: http://dx.doi.org/10.1016/S0001-4575(01)00036-7 PMID:12067103 17. Ahoniemi E et al. Incidence of traumatic spinal cord injuries in Finland over a 30-year period. Spinal
Cord, 2008, 46:781-784. doi: http://dx.doi.org/10.1038/sc.2008.53 PMID:18542095 18. O’Connor RJ, Murray PC. Review of spinal cord injuries in Ireland. Spinal Cord, 2006, 44:445-448. PMID:16304563 19. Quinones M et al. Traumatic spinal cord in Qatar: an epidemiological study. The Middle East Journal
of Emergency Medicine, 2002, 2:1-5. 20. van Asbeck FW, Post MW, Pangalila RF. An epidemiological description of spinal cord injuries in the Netherlands in 1994. Spinal Cord, 2000, 38:420-424. doi: http://dx.doi.org/10.1038/sj.sc.3101003 PMID:10962602
2. 척수손상의 국제적 상황 41
21. Li J et al. The epidemiological survey of acute traumatic spinal cord injury (ATSCI) of 2002 in Beijing municipality. Spinal Cord, 2011, 49:777-782. doi: http://dx.doi.org/10.1038/sc.2011.8 PMID:21383758 22. Ning GZ et al. Epidemiology of traumatic spinal cord injury in Tianjin, China. Spinal Cord, 2011, 49:386-390. doi: http://dx.doi.org/10.1038/sc.2010.130 PMID:20921958 23. Lieutaud T, Ndiaye A, Laumon B, Chiron M. Spinal cord injuries sustained in road crashes are not on the decrease in France: A study based on epidemiological trends. Journal of Neurotrauma, 2012, 29:479-487. 24. Augutis M, Levi R. Pediatric spinal cord injury in Sweden: incidence, etiology and outcome. Spinal Cord, 2003, 41:328-336. doi: http://dx.doi.org/10.1038/sj.sc.3101478 PMID:12746739 25. Puisto V et al. Incidence of spinal and spinal cord injuries and their surgical treatment in children and adolescents: a population-based study. Spine, 2010, 35:104-107. doi: http://dx.doi.org/10.1097/BRS. 0b013e3181c64423 PMID:20042961 26. Divanoglou A, Levi R. Incidence of traumatic spinal cord injury in Thessaloniki, Greece and Stockholm, Sweden: a prospective population-based study. Spinal Cord, 2009, 47:796-801. doi: http://dx.doi.org/10.1038/sc.2009.28 PMID:19350044 27. DeVivo MJ, Vogel LC. Epidemiology of spinal cord injury in children and adolescents. The Journal of Spinal Cord Medicine, 2004, 27:S4-S10. PMID:15503696 28. Vogel LC, Betz RR, Mulcahey MJ. Spinal cord injuries in children and adolescents. Handbook of Clinical Neurology, 2012, 109:131-148. doi: http://dx.doi.org/10.1016/B978-0-444-52137-8.00008-5 PMID:23098710 29. Burke DA et al. Incidence rates and populations at risk for spinal cord injury: a regional study. Spinal Cord, 2001, 39:274-278. doi: http://dx.doi.org/10.1038/sj.sc.3101158 PMID:11438844 30. Lenehan B et al. The epidemiology of traumatic spinal cord injury in British Columbia, Canada. Spine, 2012, 37:321-329. doi: http://dx.doi.org/10.1097/BRS.0b013e31822e5ff8 PMID:22337075 31. Surkin J et al. Spinal cord injury in Mississippi: findings and evaluation, 1992–1994. Spine, 2000, 25:716-721. doi: http://dx.doi.org/10.1097/00007632-200003150-00011 PMID:10752104 32. Pickett GE et al. Epidemiology of traumatic spinal cord injury in Canada. Spine, 2006, 31:799-805. doi: http://dx.doi.org/10.1097/01.brs.0000207258.80129.03 PMID:16582854 33. Yang NP et al. The incidence and characterisation of hospitalised acute spinal trauma in Taiwan – a population-based study. Injury, 2008, 39:443-450. doi: http://dx.doi.org/10.1016/j.injury.2007.12.007 PMID:18321510 34. Middleton JW et al. Life expectancy after spinal cord injury: a 50-year study. Spinal Cord, 2012, 50:803-811. doi: http://dx.doi.org/10.1038/sc.2012.55 PMID:22584284 35. National Spinal Cord Injury Statistical Center. Complete Public Version of the 2011 Annual Statistical Report for the Spinal Cord Injury Model System. Birmingham, Alabama, 2011. 36. Hagen EM, Eide GE, Elgen I. Traumatic spinal cord injury among children and adolescents: a cohort study in western Norway. Spinal Cord, 2011, 49:981-985. doi: http://dx.doi.org/10.1038/sc.2011.42 PMID:21556012
42 척수 손상의 국제적 관점
37. Vitale MG et al. Epidemiology of pediatric spinal cord injury in the United States, years 1997 and 2000. Journal of Pediatric Orthopedics, 2006, 26:745-749. doi: http://dx.doi.org/10.1097/01.bpo.0000235400. 49536.83 PMID:17065938 38. Olasode BJ et al. Traumatic spinal cord injuries in Ile-Ife, Nigeria, and its environs. Tropical Doctor, 2006, 36:181-182. doi: http://dx.doi.org/10.1258/004947506777978136 PMID:16884634 39. Umaru H, Ahidjo A. Pattern of spinal cord injury in Maiduguri, North Eastern Nigeria. Nigerian Journal of Medicine, 2005, 14:276-278. PMID:16350696 40. Solagberu BA. Spinal cord injuries in Ilorin, Nigeria. West African Journal of Medicine, 2002, 21:230-232. PMID:12744575 41. Nwadinigwe CU, Iloabuchi TC, Nwabude IA. Traumatic spinal cord injuries (SCI): a study of 104 cases. Nigerian Journal of Medicine, 2004, 13:161-165. PMID:15293837 42. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:1134-1137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 43. Obalum DC et al. Profile of spinal injuries in Lagos, Nigeria. Spinal Cord, 2009, 47:134-137. doi: http://dx.doi.org/10.1038/sc.2008.93 PMID:18679400 44. Fielingsdorf K, Dunn RN. Cervical spine injury outcome - a review of 101 cases treated in a tertiary referral unit. South African Medical Journal, 2007, 97:203-207. PMID:17440669 45. Gosselin RA, Coppotelli C. A follow-up study of patients with spinal cord injury in Sierra Leone. International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID: 16094542 46. Dryden DM et al. Utilization of health services following spinal cord injury: a 6-year follow-up study.
Spinal Cord, 2004, 42:513-525. doi: http://dx.doi.org/10.1038/sj.sc.3101629 PMID:15249928 47. Pirouzmand F. Epidemiological trends of spine and spinal cord injuries in the largest Canadian adult trauma center from 1986 to 2006. Journal of Neurosurgery. Spine, 2010, 12:131-140. doi: http://dx.doi.org/ 10.3171/2009.9.SPINE0943 PMID:20121346 48. Dryden DM et al. The epidemiology of traumatic spinal cord injury in Alberta, Canada. The Canadian Journal of Neurological Sciences, 2003, 30:113-121. PMID:12774950 49. Neumann CR, Brasil AV, Albers F. Risk factors for mortality in traumatic cervical spinal cord injury: Brazilian data. The Journal of Trauma, 2009, 67:67-70. doi: http://dx.doi.org/10.1097/TA.0b013e3181aa63f3 PMID:19590310 50. Leal-Filho MB et al. Spinal cord injury: epidemiological study of 386 cases with emphasis on those patients admitted more than four hours after the trauma. Arquivos de Neuro-Psiquiatria, 2008, 66:365-368. doi: http://dx.doi.org/10.1590/S0004-282X2008000300016 PMID:18641873 51. Brito LMO et al. Epidemiological evaluation of victims of spinal cord injury. Revista do Collégio
Brasileiro de Cirugöes, 2011, 38:304-309. doi: http://dx.doi.org/10.1590/S0100-69912011000500004 PMID:22124640 52. Collazo Alvarez H et al. Traumatismo raquimedular toracico y lumbar. Rev Cubana Ortop Traumatol, 2002, 16:53-60.
2. 척수손상의 국제적 상황 43
53. Alshahri SS et al. Traumatic spinal cord injury in Saudi Arabia: an epidemiological estimate from Riyadh. Spinal Cord, 2012, 50:882-884. PMID:22777491 54. Raibulet T et al. Spinal cord injury patients in the physical medicine and rehabilitation hospital, Kuwait – a nine-year retrospective study. Kuwait Medical Journal, 2001, 33:211-215. 55. Rathore FA et al. Spinal cord injury management and rehabilitation: highlights and shortcomings from the 2005 earthquake in Pakistan. Archives of Physical Medicine and Rehabilitation, 2008, 89:579-585. doi: http://dx.doi.org/10.1016/j.apmr.2007.09.027 PMID:18295642 56. Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord, 2003, 41:303-309. doi: http://dx.doi.org/10.1038/sj.sc.3101443 PMID:12714994 57. Lidal IB et al. Mortality after spinal cord injury in Norway. Journal of Rehabilitation Medicine, 2007, 39:145-151. doi: http://dx.doi.org/10.2340/16501977-0017 PMID:17351697 58. Post MWM et al. Duration and functional outcome of spinal cord injury rehabilitation in the Netherlands. Journal of Rehabilitation Research and Development, 2005, 42 Suppl I:75-85. doi: http://dx.doi.org/10.1682/JRRD.2004.10.0133 PMID:16195965 59. Scivoletto G et al. Traumatic and non-traumatic spinal cord lesions: an Italian comparison of neurological and functional outcomes. Spinal Cord, 2011, 49:391-396. doi: http://dx.doi.org/10.1038/ sc.2010.85 PMID:20603629 60. Pagliacci MC et al. An Italian survey of traumatic spinal cord injury. The Gruppo Italiano Studio Epidemiologico Mielolesioni Study. Archives of Physical Medicine and Rehabilitation, 2003, 84:1266-1275. doi: http://dx.doi.org/10.1016/S0003-9993(03)00234-X PMID:13680560 61. Catz A et al. Survival following spinal cord injury in Israel. Spinal Cord, 2002, 40:595-598. doi: http://dx.doi.org/10.1038/sj.sc.3101391 PMID:12411967 62. Cosar SN et al. Demographic characteristics after traumatic and non-traumatic spinal cord injury: a retrospective comparison study. Spinal Cord, 2010, 48:862-866. doi: http://dx.doi.org/10.1038/sc.2010.49 PMID:20440301 63. Gur A et al. Characteristics of traumatic spinal cord injuries in south-eastern Anatolia, Turkey: a comparative approach to 10 years’ experience. International Journal of Rehabilitation Research.
Internationale Zeitschrift fur Rehabilitationsforschung. Revue Internationale de Recherches de Readaptation, 2005, 28:57-62. doi: http://dx.doi.org/10.1097/00004356-200503000-00008 PMID:15729098 64. Ones K et al. Comparison of functional results in non-traumatic and traumatic spinal cord injury. Disability and Rehabilitation, 2007, 29:1185-1191. doi: http://dx.doi.org/10.1080/09638280600902661 PMID:17653992 65. Karacan I et al. Traumatic spinal cord injuries in Turkey: a nation-wide epidemiological study. Spinal
Cord, 2000, 38:697-701. doi: http://dx.doi.org/10.1038/sj.sc.3101064 PMID:11114778 66. Seguin P et al. Impact of age on mortality in patients with acute traumatic spinal cord injury requiring intensive care. Annales Francaises d’Anesthesie et de Reanimation, 2012, 31:196-202. doi: http://dx.doi.org/10.1016/j.annfar.2011.10.019 PMID:22204755 67. Van Den Berg M et al. Incidence of traumatic spinal cord injury in Aragon, Spain (1972–2008).
44 척수 손상의 국제적 관점
Journal
of
Neurotrauma,
2011,
28:469-477.
doi:
http://dx.doi.org/10.1089/neu.2010.1608
PMID:21190391 68. Islam MS, Hafez MA, Akter M. Characterization of spinal cord lesion in patients attending a specialized rehabilitation center in Bangladesh. Spinal Cord, 2011, 49:783-786. doi: http://dx.doi.org/ 10.1038/sc.2011.36 PMID:21502957 69. Singh R et al. Traumatic spinal cord injuries in Haryana: An epidemiological study. Indian Journal of Community Medicine, 2003, 28:184-186. 70. Pandey V et al. Care of post-traumatic spinal cord injury patients in India: an analysis. Indian Journal of Orthopaedics, 2007, 41:295-299. doi: http://dx.doi.org/10.4103/0019-5413.36990 PMID: 21139781 71. Chhabra HS, Arora M. Demographic profile of traumatic spinal cord injuries admitted at Indian Spinal Injuries Centre with special emphasis on mode of injury: a retrospective study. Spinal Cord, 2012, 50:745-754. doi: http://dx.doi.org/10.1038/sc.2012.45 PMID:22584285 72. Kuptniratsaikul V. Epidemiology of spinal cord injuries: a study in the spinal unit, Siriraj Hospital, Thailand. Journal of the Medical Association of Thailand, 2003, 86:1116-1121. PMID:14971518 73. Lee BB et al. The global map for traumatic spinal cord injury epidemiology: update 2011, global incidence rate. Spinal Cord, 2013,In press PMID:23439068 74. Yang JY et al. Epidemiology of the spinal cord and cauda equine injury in Korea-multicenter study. J Korean Soc Spine Surg, 2011, 18:83-90. doi: http://dx.doi.org/10.4184/jkss.2011.18.3.83 75. Middleton PM. The pre-hospital epidemiology and management of spinal cord injuries in New South Wales: 2004–2008. Injury, 2012, 43:480-485. doi: http://dx.doi.org/10.1016/j.injury.2011.12.010 PMID: 22244002 76. Chan SCC, Chan APS. Rehabilitation outcomes following traumatic spinal cord injury in a tertiary spinal cord injury centre: a comparison with an international standard. Spinal Cord, 2005, 43:489-498. doi: http://dx.doi.org/10.1038/sj.sc.3101743 PMID:15824758 77. Wu JC et al. Effects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of Neurotrauma, 2012, 29:889-897. doi: http://dx.doi.org/10.1089/neu.2011.1777 PMID:21510819 78. Wang HF et al. Epidemiological features of traumatic spinal cord injury in Anhui Province, China. Spinal Cord, 2013, 51:20-22. doi: http://dx.doi.org/10.1038/sc.2012.92 PMID:22945750 79. Wu Q et al. Epidemiology of traumatic cervical spinal cord injury in Tianjin, China. Spinal Cord, 2012, 50:740-744. doi: http://dx.doi.org/10.1038/sc.2012.42 PMID:22525311 80. Feng HY et al. Epidemiological profile of 239 traumatic spinal cord injury cases over a period of 12 years in Tiajin, China. The Journal of Spinal Cord Medicine, 2011, 34:388-394. www.maneypublishing.com/ journals/scm and www.ingentaconnect.com/content/maney/scm doi: http://dx.doi.org/10.1179/2045772311Y. 0000000017 PMID:21903012 81. Lakhey S et al. Aetioepidemiological profile of spinal injury patients in eastern Nepal. Tropical
Doctor, 2005, 35:231-233. doi: http://dx.doi.org/10.1258/004947505774938756 PMID:16354480
2. 척수손상의 국제적 상황 45
82. DeVivo MJ, Chen Y. Trends in new injuries prevalent cases, and aging with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:332-338. doi: http://dx.doi.org/10.1016/ j.apmr.2010.08.031 PMID:21353817 83. Lee JH et al. Characteristics of pediatric-onset spinal cord injury. Pediatrics International, 2009, 51:254-257. doi: http://dx.doi.org/10.1111/j.1442-200X.2008.02684.x PMID:19405927 84. Lheritier K et al. Survival of tetraplegic spinal cord injured persons after the first admission of a rehabilitation center and prognosis factors: a multicentre study of 697 subjects in French centers.
Revue d’Epidemiologie et de Sante Publique, 2001, 49:449-458. PMID:11845094 85. Celani MG et al. Spinal cord injury in Italy: a multicentre retrospective study. Archives of Physical
Medicine and Rehabilitation, 2001, 82:589-596. doi: http://dx.doi.org/10.1053/apmr.2001.21948 PMID:11346833 86. Martin BW, Dykes E, Lecky FE. Patterns and risks in spinal trauma. Archives of Disease in
Childhood, 2004, 89:860-865. doi: http://dx.doi.org/10.1136/adc.2003.029223 PMID:15321867 87. New PW, Cripps RA, Bonne Lee B. Global maps of non-traumatic spinal cord injury epidemiology: towards a living data repository. Spinal Cord, 2013, in print http://dx.doi.org/10.1038/sc.2012.165 doi: http://dx.doi.org/10.1038/sc.2012.165 PMID:23318556 88. New PW. Non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? Australian Health Review, 2006, 30:353-361. doi: http://dx.doi.org/10.1071/AH060353 PMID:16879094 89. New PW, Sundararajan V. Incidence of non-traumatic spinal cord injury in Victoria, Australia: a populationbased study and literature review. Spinal Cord, 2008, 46:406-411. doi: http://dx.doi.org/ 10.1038/sj.sc.3102152 PMID:18071356 90. van den Berg ME et al. Incidence of nontraumatic spinal cord injury: a Spanish cohort study (1972– 2008). Archives of Physical Medicine and Rehabilitation, 2012, 93:325-331. doi: http://dx.doi.org/ 10.1016/j.apmr.2011.08.027 PMID:22289245 91. Centers for Disease Control and Prevention. Racial/ethnic differences in the birth prevalence of spina bifida – United States, 1995. MMWR Morb Mortal Wkly, 2009. Rep, 2005, 57:1409-1413. 92. Tarqui Mamani C et al. Incidencia de los defectos del tubo neural en el Instituto Nacional Materno Perinatal de Lima, Incidence of neural tube defects in the National Maternal-Perinatal Institute of Lima. Rev Chil Salud Pública, 2009, 13:82-89. 93. Msamati BC, Igbigbi PS, Chisi JE. The incidence of cleft lip, cleft palate, hydrocephalus and spina bifida at Queen Elizabeth Central Hospital, Blantyre, Malawi. The Central African Journal of Medicine, 2000, 46:292-296. PMID:12002118 94. Murshid WR. Spina bifida in Saudi Arabia: is consanguinity among the parents a risk factor? Pediatric Neurosurgery, 2000, 32:10-12. doi: http://dx.doi.org/10.1159/000028890 PMID:10765132 95. Onrat ST et al. Incidence of neural tube defects in Afyonkarahisar, Western Turkey. Genetics and Molecular Research, 2009, 8:154-161. doi: http://dx.doi.org/10.4238/vol8-1gmr552 PMID:19283682 96. Orioli IM et al. Effects of folic acid fortification on spina bifida prevalence in Brazil. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2011, 91:831-835. doi: http://dx.doi.org/10.1002/ bdra.20830 PMID:21630426
46 척수 손상의 국제적 관점
97. Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 98. Ahuka OL et al. Congenital malformations in the North-Eastern Democratic Republic of Congo during Civil War. East African Medical Journal, 2006, 83:95-99. doi: http://dx.doi.org/10.4314/ eamj.v83i2.9395 PMID:16708881 99. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 100. Amini H et al. The Swedish Birth Defects Registry: ascertainment and incidence of spina bifida and cleft lip/palate. Acta Obstetricia et Gynecologica Scandinavica, 2009, 88:654-659. doi: http://dx.doi.org/ 10.1080/00016340902934696 PMID:19412801 101. Barboza Arguello ML, Umana Solis LM. Impact of the fortification of food with folic acid on neural tube defects in Costa Rica. Revista Panamericana de Salud Pública, 2011, 30:1-6. PMID:22159644 102. Sipek A, Gregor V, Horacek J. Birth defects in the Czech Republic in the period 1961–2005 – mean incidences. Ceska Gynekologie, 2007, 72:185-191. PMID:17616072 103. Hernandez-Herrera RJ, Alcala-Galvan LG, Flores-Santos R. Neural defect prevalence in 248,352 consecutive newborns. Revista Medica del Instituto Mexicano del Seguro Social, 2008, 46:201-204. PMID:19133193 104. Boyd PA et al. Monitoring the prenatal detection of structural fetal congenital anomalies in England and Wales: registerbased study. Journal of Medical Screening, 2011, 18:2-7. doi: http://dx.doi.org/ 10.1258/jms.2011.010139 PMID:21536809 105. De Wals PF et al. Reduction in neural-tube defects after folic acid fortification in Canada. The New England Journal of Medicine, 2007, 357:135-142. doi: http://dx.doi.org/10.1056/NEJMoa067103 PMID: 17625125 106. Lopez-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. American Journal of Medical
Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 107. Njamnshi AK et al. Neural tube defects are rare among black Americans but not in sub-Saharan black Africans: the case of Yaounde – Cameroon. Journal of the Neurological Sciences, 2008, 270:13-17. doi: http://dx.doi.org/10.1016/j.jns.2008.01.010 PMID:18295800 108. Owen TJ, Halliday JL, Sone CA. Neural tube defects in Victoria, Australia: potential contributing factors and public health implications. Australian and New Zealand Journal of Public Health, 2000, 24:584-589. doi: http://dx.doi.org/10.1111/j.1467-842X.2000.tb00521.x PMID:11215005 109. Sayed AR et al. Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research. Part A, Clinical and Molecular
Teratology, 2008, 82:211-216. doi: http://dx.doi.org/10.1002/bdra.20442 PMID:18338391 110. Golalipour MJ et al. Epidemiology of neural tube defects in northern Iran, 1998–2003. Eastern
Mediterranean Health Journal, 2007, 13:560-566. PMID:17687828
2. 척수손상의 국제적 상황 47
111. Farhud D, Hadavi V, Sadighi H. Epidemiology of neural tube defects in the world and Iran. Iranian Journal of Public Health, 2000, 29:83-90. 112. Garcia Lopez E et al. Prevalence of neural tube defects in Asturias (Spain): impact of prenatal diagnosis. Gaceta Sanitaria, 2009, 23:506-511. doi: http://dx.doi.org/10.1016/j.gaceta.2009.01.011 PMID:19406531 113. Sanchis Calvo A, Martinez-Frias M. Clinical epidemiological study of neural tube defects classified according to the five sites of closure. Anales Espanoles de Pediatria, 2001, 54:165-173. doi: http://dx.doi.org/10.1016/S1695-4033(01)78673-0 PMID:11181213 114. Liu J et al. Prevalence of neural tube defects in economically and socially deprived area of China.
Child’s Nervous System, 2007, 23:1119-1124. doi: http://dx.doi.org/10.1007/s00381-007-0344-3 PMID: 17450368 115. Pei LJ et al. The epidemiology of neural tube defects in high-prevalence and low-prevalence areas of China. Zhonghua Liu Xing Bing Xue Za Zhi, 2003, 24:465-470. PMID:12848911 116. Li Z et al. Prevalence of major external birth defects in high and low risk areas in China, 2003. Zhonghua Liu Xing Bing Xue Za Zhi, 2005, 26:252-257. PMID:15941530 117. Bower C, D’Antoine H, Stanley FJ. Neural tube defects in Australia: trends in encephaloceles and other neural tube defects before and after promotion of folic acid supplementation and voluntary food fortification. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2009, 85:269-273. doi: http://dx.doi.org/10.1002/bdra.20536 PMID:19180646 118. Li Z et al. Extremely high prevalence of neural tube defects in a 4-county area in Shanxi Province, China. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2006, 76:237-240. doi: http://dx.doi.org/10.1002/bdra.20248 PMID:16575897 119. Nikkila A, Rydhstrom H, Kallen B. The incidence of spina bifida in Sweden 1973–2003: the effect of prenatal diagnosis. European Journal of Public Health, 2006, 16:660-662. doi: http://dx.doi.org/ 10.1093/eurpub/ckl053 PMID:16672253 120. Petrova JG, Vaktskjold A. The incidence of neural tube defects in Norway and the Arkhangelskaja Oblast in Russia and the association with maternal age. Acta Obstetricia et Gynecologica
Scandinavica, 2009, 88:667-672. doi: http://dx.doi.org/10.1080/00016340902898008 PMID:19353336 121. Rankin J et al. The changing prevalence of neural tube defects: a population-based study in the north of England, 1984–96. Northern Congenital Abnormality Survey Steering Group. Paediatric and Perinatal Epidemiology, 2000, 14:104-110. doi: http://dx.doi.org/10.1046/j.1365-3016.2000.00246.x PMID:10791652 122. Catz A. Recovery of neurologic function following nontraumatic spinal cord lesions in Israel. Spine (Phila Pa 1976). 2004. Oct 15;29(20):2278–2282; discussion 2283. 123. Werhagen L, Hultling C, Molander C. The prevalence of neuropathic pain after non-traumatic spinal cord lesion. Spinal Cord, 2007, 45:609-615. doi: http://dx.doi.org/10.1038/sj.sc.3102000 PMID: 17160075 124. Osterthun R, Post MWM, van Asbeck FWA. Characteristics, length of stay and functional outcome of patients with spinal cord injury in Dutch and Flemish rehabilitation centers. Spinal Cord, 2009,
48 척수 손상의 국제적 관점
47:339-344. doi: http://dx.doi.org/10.1038/sc.2008.127 PMID:19002154 125. Gupta A et al. Non-traumatic spinal cord lesions: epidemiology, complications, neurological and functional outcome of rehabilitation. Spinal Cord, 2009, 47:307-311. doi: http://dx.doi.org/ 10.1038/sc.2008.123 PMID:18936767 126. Quintana-Gonzales A et al. Nontraumatic spinal cord injury: etiology, demography and clinics. Rev Peru Med Exp Salud Publica, 2011, 28:633-638. PMID:22241260 127. Ahoniemi E, Pohjolainen T, Kautiainen H. Survival after spinal cord injury in Finland. Journal of Rehabilitation Medicine, 2011, 43:481-485. doi: http://dx.doi.org/10.2340/16501977-0812 PMID:21533327 128. Sabre L et al. Traumatic spinal cord injury in two European countries: why the differences? European Journal of Neurology, 2013, 20:293-299. doi: http://dx.doi.org/10.1111/j.1468-1331.2012.03845.x PMID:22891855 129. O’Connor PJ. Survival after spinal cord injury in Australia. Archives of Physical Medicine and Rehabilitation, 2005, 86:37-47. PMID:15640987 130. Hagen EM et al. Traumatic spinal cord injuries – incidence, mechanisms and course. Tidsskrift for Den Norske Laegeforening, 2012, 132:831-837. doi: http://dx.doi.org/10.4045/tidsskr.10.0859 PMID: 22511097 131. Strauss DJ et al. Trends in life expectancy after spinal cord injury. Archives of Physical Medicine
and Rehabilitation, 2006, 87:1079-1085. doi: http://dx.doi.org/10.1016/j.apmr.2006.04.022 PMID:16876553 132. Saunders LL et al. Traumatic spinal cord injury mortality, 1981–1998. The Journal of Trauma, 2009, 66:184-190. doi: http://dx.doi.org/10.1097/TA.0b013e31815644e5 PMID:19131823 133. Soden RJ et al. Causes of death after spinal cord injury. Spinal Cord, 2000, 38:604-610. doi: http://dx.doi.org/10.1038/sj.sc.3101080 PMID:11093321 134. National Spinal Cord Injury Statistical Center. Birmingham, Alabama Spinal Cord Injury Facts and Figures at a Glance, February 2012 (https://www.nscisc.uab.edu/PublicDocuments/fact_figures_ docs/Facts%202012%20Feb%20Final.pdf, accessed 9 January 2013). 135. Hagen EM et al. Mortality after traumatic spinal cord injury: 50 years of follow-up. Journal of Neurology, Neurosurgery, and Psychiatry, 2010, 81:368-373. doi: http://dx.doi.org/10.1136/ jnnp.2009.178798 PMID:19726408 136. Rathore MFA. 2013. Spinal Cord Injuries in the Developing World. In: JH Stone, M Blouin, eds. International encyclopedia of rehabilitation. Available online: http://cirrie.buffalo.edu/encyclopedia/ en/article/141/ 137. Couris CM et al. Characteristics of adults with incident traumatic spinal cord injury in Ontario, Canada. Spinal Cord, 2010, 48:39-44. doi: http://dx.doi.org/10.1038/sc.2009.77 PMID:19546873 138. Fassett DR et al. Mortality rates in geriatric patients with spinal cord injuries. Journal of
Neurosurgery, 2007, 7:277-281. PMID:17877260 139. Demetriades D et al. The effect of trauma center designation and trauma volume on outcome in specific severe injuries. Annals of Surgery, 2005, 242:512-517. PMID:16192811 140. Harvey C et al. New estimates of the direct costs of traumatic spinal cord injuries: results of a
2. 척수손상의 국제적 상황 49
nationwide survey. Paraplegia, 1992, 30:834-850. doi: http://dx.doi.org/10.1038/sc.1992.160 PMID:1287537 141. Johnson RL, Brooks CA, Whiteneck GG. Cost of traumatic spinal cord injury in a population-based registry. Spinal Cord, 1996, 34:470-480. doi: http://dx.doi.org/10.1038/sc.1996.81 PMID:8856854 142. Botel U et al. The cost of ventilator-dependent spinal cord injuries-patients in the hospital and at home. Spinal Cord, 1997, 35:40-42. doi: http://dx.doi.org/10.1038/sj.sc.3100345 PMID:9025219 143. DeVivo MJ. Causes and costs of spinal cord injury in the United States. Spinal Cord, 1997, 35:809-813. doi: http://dx.doi.org/10.1038/sj.sc.3100501 PMID:9429259 144. Dryden DM et al. Direct health care costs after traumatic spinal cord injury. The Journal of
Trauma, 2005, 59:443-449. PMID:16294090 145. Mak KS et al. Incidence and treatment patterns in hospitalizations for malignant spinal cord compression in the United States, 1998–2006. International Journal of Radiation Oncology, Biology, Physics, 2011, 80:824-831. doi: http://dx.doi.org/10.1016/j.ijrobp.2010.03.022 PMID:20630663 146. New PW, Jackson T. The costs and adverse events associated with hospitalization of patients with spinal cord injury in Victoria, Australia. Spine, 2010, 35:796-802. PMID:20228702 147. Greenwald BD et al. Gender-related differences in acute rehabilitation lengths of stay, charges, and functional outcomes for a matched sample with spinal cord injury: a multicenter investigation. Archives of Physical Medicine and Rehabilitation, 2001, 82:1181-1187. doi: http://dx.doi.org/ 10.1053/apmr.2001.24891 PMID:11552188 148. St. Andre JR et al. A comparison of costs and health care utilization for veterans with traumatic and nontraumatic spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:27-42. doi: http://dx.doi.org/10.1310/sci1604-27 149. Sundance PD et al. Systematic care management: clinical and economic analysis of a national sample of patients with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2004, 10:17-34. doi: http://dx.doi.org/10.1310/2E3M-X01K-786H-V8FC 150. Baaj AA et al. Health care burden of cervical spine fractures in the United States: analysis of a nationwide database over a 10-year period. Journal of Neurosurgery. Spine, 2010, 13:61-66. doi: http://dx.doi.org/10.3171/2010.3.SPINE09530 PMID:20594019 151. DeVivo MJ et al. Costs of care following spinal cord injury. Topics in Spinal Cord Injury
Rehabilitation, 2011, 16:1-9. doi: http://dx.doi.org/10.1310/sci1604-1 152. Cao Y et al. Lifetime direct costs after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2011, 16:10-16. doi: http://dx.doi.org/10.1310/sci1604-10 153. National Spinal Cord Injury Statistical Center. Birmingham, Alabama Spinal Cord Injury Facts and
Figures at a Glance, February 2013 (https://www.nscisc.uab.edu/PublicDocuments/fact_figures_ docs/Facts%202013.pdf, accessed 23 Mai 2013). Based on data from Economic Impact of SCI published in Topics in Spinal Cord Injury Rehabilitation, 2011, 16(4). 154. Access Economics for the Victorian Neurotrauma Initiative. The economic cost of spinal cord injury and traumatic brain injury in Australia. 2009 (http://www.tac.vic.gov.au/about-the-tac/our-organisation/ research/tac-neurotraumaresearch/vni/the20economic20cost20of20spinal20cord20injury20and20trau
50 척수 손상의 국제적 관점
matic20brain20injury20in20australia.pdf?bcsi_scan_c7a381ba8bd8a412=Ll1KKoXsl2UO97L0ZcjjMUAT HXYjAAAAPRI4Bw==&bcsi_scan_filename=the20economic20cost20of20spinal20cord20injury20and20tr aumatic20brain20injury20in20australia.pdf, accessed 9 January 2013) Based on Transport Accident Commission (TAC) data on the costs for healthcare, long term care, equipment and modifications, administration and compensation to families for TBI and SCI patients in Victoria for pay years 2004– 2008. 155. Cassell CH et al. Health care expenditures among children with and those without spina bifida enrolled in Medicaid in North Carolina. Birth Defects Research. Part A, Clinical and Molecular
Teratology, 2011, 91:1019-1027. doi: http://dx.doi.org/10.1002/bdra.22864 PMID:22021073 156. Bowkett B, Deverall E. Paediatric spina bifida inpatient treatment at Wellington Regional Hospital: a cost analysis of sequential patients. The New Zealand Medical Journal, 2012, 125:13-18. PMID: 22426607 157. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/ 10.1007/s00431-011-1492-8 PMID:21594574 158. Munce SE et al. Direct costs of adult traumatic spinal cord injury in Ontario. Spinal Cord, 2013, 51:64-69. doi: http://dx.doi.org/10.1038/sc.2012.81 PMID:22801189 159. Haeusler JM et al. Pilot study on the comprehensive economic costs of major trauma: consequential costs are well in excess of medical costs. The Journal of Trauma, 2006, 61:723-731. PMID:16967014 160. Noonan VK et al. The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry.
Spinal Cord, 2012, 50:22-27. doi: http://dx.doi.org/10.1038/sc.2011.109 PMID:22042297 161. Rick Hansen Institute Spinal Cord Injury Registry. web site (http://rickhansenregistry.org, accessed 17 March 2013). 162. O’Connor PJ. Development and utilisation of the Australian spinal cord injury register. Spinal Cord, 2000, 38:597-603. doi:http://dx.doi.org/10.1038/sj.sc.3101048 PMID:11093320 163. Stover SL et al. History, implementation, and current status of the national spinal cord injury database. Archives of Physical Medicine and Rehabilitation, http://dx.doi.org/10.1016/S0003-9993(99)90246-0 PMID:10569429 1999, 80:1365-1371. doi:
164. DeVivo MJ, Go BK, Jackson AB. Overview of the National Spinal Cord Injury Statistical Center database. The Journal of Spinal Cord Medicine, 2002, 25:335-338. PMID:12482178 165. World Health Organization. International Classification of Diseases, 2010, web site (http://www.who.int/ classifications/icd/en/, accessed 18 March 2012). 166. OECD, World Health Organization, Eurostat. A system of health accounts, OECD Publishing, 2011 (http://www.oecd-ilibrary.org/social-issues-migration-health/a-system-of-health-accounts_97892641 16016-en, accessed 17 May 2013). 167. Marino RJ et al. International standards for neurological classification of spinal cord injury. The Journal of Spinal Cord Medicine, 2003, 26 Suppl 1:S50-S56. PMID:16296564
2. 척수손상의 국제적 상황 51
168. Waring WP et al. 2009 review and revisions of the International Standards for the Neurological Classification of Spinal Cord Injury. The Journal of Spinal Cord Medicine, 2010, 33:346-352. PMID:21061894 169. Kirshblum SC et al. International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 2011, 34:535-546. doi: http://dx.doi.org/ 10.1179/204577211X13207446293695 PMID:22330108 170. Kirshblum SC et al. Reference for the 2011 revision of the International Standards for Neurological Classification of Spinal Cord Injury. The Journal of Spinal Cord Medicine, 2011, 34:547-554. doi: http://dx.doi.org/10.1179/107902611X13186000420242 PMID:22330109 171. Biering-Sørensen F et al. International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi.org/10.1038/sj.sc.3101930 PMID:16955072 172. International SCI Data Sets. International Spinal Cord Society (ISCoS) (http://www.iscos.org.uk/ international-sci-data-sets, accessed 22 May 2013). 173. DeVivo MJ. International Spinal Cord Injuury Core Data Set. Spinal Cord, 2006, 44:535-540. 174. New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord, advance online publication, January 2013. doi: 10.1038/sc.2012.160. doi: http://dx.doi.org/10.1038/sc.2012.160 175. DeVivo MJ et al. Standardization of data analysis and reporting of results from the International Spinal Cord Injury Core Data Set. Spinal Cord, 2011, 49:596-599. doi: http://dx.doi.org/10.1038/ sc.2010.172 PMID:21135863 176. Global Mapping of Spinal Cord Injury (SCI) Epidemiology. Towards a living data repository. The International Spinal Cord Society, web site (http://www.iscos.org.uk/sci-global-mapping, accessed 4 June, 2013). 177. Biering-Sørensen F et al. Developing core sets for persons with spinal cord injuries based on the International Classification of Functioning, Disability and Health as a way to specify functioning. Spinal Cord, 2006, 44:541-546. doi: http://dx.doi.org/10.1038/sj.sc.3101918 PMID:16955074 178. Cieza A et al. ICF Core Sets for individuals with spinal cord injury in the long-term context. Spinal
Cord, 2010, 48:305-312. doi: http://dx.doi.org/10.1038/sc.2009.183 PMID:20065984 179. Kirchberger I et al. ICF Core Sets for individuals with spinal cord injury in the early post-acute context. Spinal Cord, 2010, 48:297-304. doi: http://dx.doi.org/10.1038/sc.2009.128 PMID:19786973 180. Gale Encyclopedia of Medicine. 4th ed. Farmington Hills, Michigan: Gale Cengage Learning Inc; 2011. 181. Centers for Disease Control and Prevention. Case definition of spinal cord injury. 1990 (http://wwwn.cdc.gov/nndss/script/casedef.aspx?CondYrID=854&DatePub=1/1/1990%2012:00:00%20 AM, accessed 17.5.2013). 182. Ackery A, Tator C, Krassioukov A. A global perspective on spinal cord injury epidemiology. Journal of Neurotrauma, 2004, 21:1355-1370. doi: http://dx.doi.org/10.1089/neu.2004.21.1355 PMID:15672627 183. Draulans N et al. Etiology of spinal cord injuries in sub-Saharan Africa. Spinal Cord, 2011,
52 척수 손상의 국제적 관점
49:1148-1154. doi: http://dx.doi.org/10.1038/sc.2011.93 PMID:21987062 184. Solagberu BA et al. Pre-hospital care in Nigeria: a country without emergency medical services.
Nigerian Journal of Clinical Practice, 2009, 12:29-33. PMID:19562917 185. Afuwape OO et al. Preventable trauma deaths in Ibadan: a comparison of revised trauma score and panel review. West African Journal of Medicine, 2011, 30:19-23. doi: http://dx.doi.org/ 10.4314/wajm.v30i1.69879 PMID:21863584 186. Thanni LO, Kehinde OA. Trauma at a Nigerian teaching hospital: pattern and documentation of presentation. African Health Sciences, 2006, 6:104-107. PMID:16916301 187. Noonan VK et al. The validity of administrative data to classify patients with spinal column and cord injuries. Journal of Neurotrauma, 2013, 30:173-180. doi: http://dx.doi.org/10.1089/neu.2012.2441 PMID:23002989
2. 척수손상의 국제적 상황 53
Prevention of spinal cord injury
3. 척수손상의 예방
“저는 52세 남성으로 중증의 불완전 마비 척수장애인(경수 4번)입니다. 제가 16살이었던 1973년에 교통사고로 척수 장애인이 되었습니다. 교통사고는 제 잘못으로 발생했습니다. 술을 조금 마셨었고, 운전면허도 없이 너무 빠른 속도로 운전을 했습니다. 저는 팔을 약간 움직일 수 있고 손을 약간 사용할 수 있습니다. 설 수는 있으나 걸을 수는 없습니다. 컴퓨터 자판을 칠 수가 없어서 음성 텍스트 변환(speech-to-text) 프로그램을 사용해 컴퓨터에 글을 입력합니다. 이동할 때는 전동 휠체어를 사용합니다. 개인 신변 처리를 위해 24시간 활동 보조 서비스도 이용하고 있습니다.” (스티그, 덴마크)
“농번기 기간에 다음 쌀농사를 위해 좋은 종자를 구매할 돈을 마련하고, 또한 아이들 학교 교육에 필요한 경비와 애들 미래를 준비하는 데 필요한 부가 수입을 얻고자 하노이에 있는 건축 현장에서 일했습니다. 그러나 어느 날 벽돌을 한 짐 지고 젖은 판재 위를 이동하던 중 중심을 잃었을 때, 말 그대로 제 모든 인생이 그 도시에서 그날 무너져 버렸습니다.” (익명, 베트남)
“1976년에 집 지붕에서 떨어져서 척수손상(경수 5-6번)을 입어, 다리를 움직일 수 없고 손가락과 팔만 제한적으로 움직일 수 있습니다.” (데이비드, 미국)
“1998년에 총상을 당해 흉수 6-7번 부위에 손상을 입었습니다.” (로버트, 우간다)
“1997년 10월 호주 퀸즐랜드 누사 헤드에서 서프보드를 타던 중 부상을 당했습니다. 그 결과 경수 손상을 입었고 (4-5번) 머리를 제외한 신체의 다른 부분은 전혀 기능적으로 움직일 수가 없습니다. 손상을 당하자마자 많은 어려운 점들이 갑작스레 발생하는 상황에 빠지고 말았습니다. 그리고 이런 상황 속에서 자립을 극대화하고 다른 사람의 부담을 줄이기 위해 문제 해결 능력에 더욱 관심을 가지게 되었습니다.” (브래드, 호주)
“1974년, 제가 15살 때 럭비를 하던 중 척수손상을 당한 이후 계속 사지 마비 장애인으로 살고 있습니다.” (리처드, 뉴질랜드)
3 척수손상의 예방 척수손상이 교통사고나 추락과 같은 외상성 사건으로 발생했을 때, 종종 순식간에 건강한 상태에서 영구적인 장애 상태가 된다. 손상 원인이 외상성이든 비외상성이든지 간에, 좋은 소식은 이러한 손상의 상당 부분이 예방 가능하다는 것이다. 일차 예방은 문제가 발생하기 전에 개인이든 혹은 집단이든 척수손상의 원인을 피하거나 제거하기 위한 활동에 함께하는 것이다. 예를 들면, 교통사고로 인한 손상을 줄이기 위한 행동 등이다. 이차 예방은 일단 척수손상이 발생했을 때를 기점으로 한다. 이 단계의 목적은 조기 진단과 치료를 제공하여 장애가 발생하지 않도록 하는 것이다(4장: 보건 의료와 재활의 요구: 입원 전과 급성기 치료 참조). 손상 이후에 적절한 시설로의 올바른 이송을 포함해 척수손상 가능성의 조기 인지와 급성기 재활에 대한 접근이 이차 예방의 한 부분이다. 삼차 예방은 합병증 발생을 줄이고 가정과 사회로 척수장애인의 성공적인 통합을 촉진하기 위해 척수손상 이후 재활과 환경적 개입에 초점을 두는 것이다(1). 모든 형태의 예방이 시의적절하게 필요하다. 척수장애인은 장애로 인한 건강 상태의 어려움을 해결하기 위해 인권 및 사회적 통합과 더불어 건강에 대한 접근을 강조해 왔다(2). 장애인 권리 협약에서 강조하고 있듯이 (3) 존중과 존엄의 인권 원칙은 척수장애인의 삶의 품격을 떨어뜨리지 않는 방식의 예방 전략 수립을 주문하고 있다(4). 이 장은 척수손상의 발생을 줄이기 위한, 특히 우선적으로 외상의 근원을 줄이기 위한 일차 예방 중재에 대해서 논할 것이다. 이 장에서는 효율성이 입증된 중재 내용을 강조하고 더욱 연구가 필요한 개입 내용을 소개할 것이다. 이차, 삼차 예방 방법은 이어지는 장에서 계속 다루도록 하겠다.
외상성 척수손상의 원인
외상성 척수손상은 교통사고, 추락, 폭력과 같은 다양한 외적 요인을 통해 발생하거나 혹은 다양한 활 동을 수행할 때, 예를 들어, 직장에서, 스포츠 활동 중에 혹은 집에 있는 동안 발생하기도 한다. 예방 전략은 손상 발생 위험이 증가하는 구체적인 상황과 관련되는 경향이 있다. 이 섹션에서는 원인에 따른 외상성 척수손상의 예방법을 알아본다.
3. 척수손상의 예방 57
▶ 교통사고 지역 간의, 지역 내의 상황과 구체적 경위는 다양하겠지만, 교통사고는 전 세계적으로 척수손상의 가장 일반적인 원인이다. 전 세계 교통사고 통계(2장 참조)에 따르면, 척수손상 발생은 젊은 성인과 남성 사이에서 높다(5-7). 그러므로 교통사고의 발생을 줄이는 것이 척수손상 예방에 있어 상당히 중요하며, 해던 매트릭스(Haddon matrix)에 기술된 충돌 전, 충돌 시, 충돌 후의 단계별로 대비해야 한다((8), (표 3.1 참조)). (표 3.1) 교통사고 부상 방지를 위한 해던 매트릭스(Haddon matrix) 적용 단계 충돌 전 충돌 예방 요인 사람 정보 태도 손상 경찰 공권력 안전구속장치 사용 손상 응급조치 기술 의료진에 접근 차량과 장비 안전주행능력 라이트 브레이크 핸들링 속도 관리 탑승자 구속장치 기타 안전 장비 충돌 방지 설계 접근의 용이성 화재 위험 환경 접근의 용이성 화재 위험
충돌
충돌 시 부상 예방
도로변 충돌방지 대상 구호 시설 교통 혼잡
충돌 후
생명 유지
충돌 방지를 위한 안전 시스템 적용 교통사고 예방을 위한 안전 시스템 적용은 고소득 국가에서 교통사고와 관련된 사망과 장애를 줄이는 데 있어 핵심이 되어 왔다(그림 3.1) (9, 12). 이 접근 방식은 모든 종류의 차량과 공간을 공유하는 다양한 도로 사용자의 상호 작용이 충돌로 이어질 수 있다는 가능성을 인정하는 것으로, 만약 구성 요소(차량, 사람, 도로)와 이들 간의 상호 작용이 적절하게 관리되지 않는다면(시스템 설계) 이는 더 심각한 부상과 인명 피해를 가져올 수 있는 충돌 사고로 이어질 수도 있다는 것이다(9). 안전 시스템 방식 적용이란 충돌 전, 충돌 시, 충돌 후 각각의 단계에서 주요 ‘오류’ 원인을 확인하고 수정하기 위한 방법을 찾는 것이다. 예를 들어, 차량 탑승자의 주요 위험 요인으로는 과속이나 부적절한 속력, 안전벨트 미착용과 아동용 카 시트 미장착, 음주 운전이나 향락성 약물 중독 운전 등이 잘 알려져 있다(13). 충돌 데이터와 근거에 기반한 개입으로 확인된 목표 대상의 제거와 더불어 액션 플랜의 개발과 이행 은 안전 시스템 방식 적용에 핵심적인 요소이다(12, 14). 도로 안전 행동 계획의 성공적인 이행을 위해서는 효과적인 홍보, 광범위한 지역 사회의 수용, 확인된 사업 주도 기관(예를 들면, 교통부 내의 독립 기구)과 범정부 부처와의 내부 협력, 그리고 산업계와 자동차 협회, 의료 전문가, 도로 안전 옹호 그룹 같은 비정부 기구 간의 협력이 요구된다(9).
58 척수 손상의 국제적 관점
안전 시스템 방식은 전체적, 순환적인 방식이며 다음의 내용으로 구성되어야 한다. • 문제 확인. • 전략 구성. • 선택된 정책 이행. • 평가, 평가 후 정책 미세 조정, 재평가
출처: (10, 11).
(그림 3.1) 도로 안전을 위한 ‘안전 시스템’ 접근 방식 이 조치는 다음의 내용을 포함할 수 있다. • 음주와 운전, 속도, 안전벨트 및 헬멧 사용 등에 대한 적절한 법을 만들고 이를 강제. • 사회적 캠페인, 대외 홍보 활동 등을 통해 도로 안전 관련 대중 교육. • 에어백, 안전 구속(restraint) 시스템, 도로 설계를 포함한 공학적 안전 대책 마련. 안전 시스템 방식 적용은 교통사고 감소를 통해 중요성이 입증되었고, 이를 근거로 도로 안전 시스템은 계속 해서 업데이트되는 중이다(9, 12). 도로 환경, 차량의 수, 차량 이용, 특별한 자원 제약 조건 등을 고려한 고소득 국가에서 저·중소득 국가로의 지식과 기술 이전은 향후 증가할 것으로 전망되는 충돌 관련 사망률과 이환율(Mortality & Morbidity)의 대처 에 있어 중요하다(15).
차량 이용자의 척수손상을 줄이기 위한 구체적인 개입 활동 척수손상과 직접적으로 관련된 개별적인 개입이 진행되는 한편 (16, 17) (박스 3.1 참조), 전체적인 도로 환경(예: 토지 사용, 지역 사회로의/를 위한 접근, 주택 주변, 기타 편의 시설)에 초점을 맞추어 시스템 접근 방식을 이행할 경우 더 많은 혜택을 얻을 수 있다. 그리고 이 경우에는, 모든 도로 3. 척수손상의 예방 59
이용자의 요구와 능력, 탑승자뿐만 아니라 충돌 시에 차량과 직접적으로 부딪힐 수 있는 다른 도로 이용자의 안위까지도 보호하는 차량 설계와 홍보가 고려되어야 한다(9, 12). 교통사고와 관련된 개입 방법은 (표 3.2)에 제시했다. 주로 차량에 대한 개입 조치가 우선적으로 고려되겠지만, 통상적인 환경 구조 개선을 통한 교통 완화 조치(예: 우회로, 노면요철 포장, 차량 분리 등)로 도시 지역의 교통 충돌 사고율을 잠재적으로 낮출 수 있다.
박스 3.1. 척수손상 위험을 증대시키는 차량 충돌 전복 사고(Rollover) 마틸다는 친구의 농장에서 30번째 생일파티를 한 다음 날 일요일 아침 남자 친구의 차를 혼자 운전하고 있었다. 그녀는 새벽까지 술을 마시고 잠이 부족한 상태였다. 그녀가 몰던 차량은 부실하게 건설되어 급격한 경사면이 있는 아스팔트 도로 갓길 구간으로 미끄러지면서, 눈 깜작할 사이에 균형을 잃어버렸다. 이어서 앞쪽 안쪽 타이어가 도로 가장자리에 부딪히면서 차량이 전복되었다. 심각한 충돌 사고만큼 마틸다의 부상도 심각했으며, 그녀는 목 골절과 탈구의 부상을 입었고, 이로 인해 사지 마비가 되었다. 마틸다의 사례는 전형적인 사고의 모습이다. 차량이 전복되는 충돌 사고는 심각한 부상을 초래하게 된다. 차량이 전복 되면서 탑승자의 머리가 차량 천장에 닿게 되고, 이 경우 모든 신체 무게가 목에 실리게 된다(16, 18, 19). 그리고 축방향 압력으로 인해 경수 골절-탈구가 발생하게 된다. 차량 출동 전복 사고는 비교적 흔히 발생하며, 특히 과속, 차량 불량 정비, 도로 상태 부실과 같은 위험 요인이 발견되는 농촌 지역에서 많이 발생한다. 차량 전복 충돌 사고의 발생과 영향을 줄이기 위해서는 다음의 조치를 취해야 한다. ∙차량의 전복 방지 기준 도입을 포함한 규제 마련 (20). ∙차량 자세 제어 장치(ESC) 이용. 예: 미끄럼을 감지 및 방지해서 차량의 주행 안정성을 향상시키는 컴퓨터화 된 기술 (21, 22). ∙갓길 안정성 확보를 위한 안전 펜스와 갓길 실링(road shoulder sealing) 설치 (23). ∙과속, 피로, 음주 운전에 대한 적극적인 대책. 또한 다음의 구체적 조치 포함해야 한다. ∙머리 안전 구속 장치의 높이 규정을 구체화한 차량 좌석 디자인과 세밀한 좌석 디자인 의무 규정 도입은 경추 연부 조직(soft-tissue) 염좌 가능성과 정도를 낮출 수 있다. 예: 편타 손상(whiplash-type injury) (24-26). ∙올바른 3점식 안전벨트 사용으로 긴장-굴곡(tension-flexion) 손상과 같이 차량 내부 구조물 충돌로 인한 심각한 두부 충격 (24, 27, 28) 및 차량에서 탑승자가 튀어 나가는 것을 방지할 수 있으며, 흉추-요추 손상을 효과적으로 예방할 수 있다. 안전벨트 착용률을 높이기 위해서는, 안전벨트 착용 주의 시스템과 같은 행위적 개입과 더불어 강제력을 지닌 조치가 필요하다(20, 30). ∙아동의 연령과 몸무게에 맞는 아동 안전 구속 시스템은 유아와 아동의 손상 위험 감소에 매우 중요하며, 흉추-요추, 복부 손상을 예방할 수 있는 2점식 벨트가 바람직하다(13, 31-33). ∙오토바이 헬멧이 외상성 두뇌 손상을 예방하는 역할을 한다는 점은 현재 잘 알려져 있는 반면에, 경수 손상 예방에는 어떤 역할을 하는지 아직 명확하지 않다. 따라서, 헬멧의 손상 방지 여부를 결정하기 위한 추가적인 연구가 필요 하다(34).
다른 도로 이용자 보호 위험에 노출된 도로 이용자(오토바이 운전자, 보행자, 자전거 운전자)의 척수손상과 기타 부상을 예방하기 위한 정책적 토대를 마련하는 것은 복잡한 과정이다. 무엇보다도 보행자와 자전거 운전자를
60 척수 손상의 국제적 관점
차량에서 적절하게 분리시킬 수 있는 안전한 도로 환경 제공과 충돌 위험 감소를 위해 설계된 행동적 측면의 개입이 예방에 있어 고려되어야 한다. 특히 급격하게 차량 이용이 증가하고 있지만 여전히 이동의 주요 방법이 보행 또는 자전거 이용 이거나 탑승자 안전 규정 조치가 없는 만원 픽업트럭 등과 같은 안전하지 않은 차량을 이용하는 저·중소득 국가에서는 적절한 해결책을 마련하기가 더 어렵다(9). 이런 높은 교통량으로 인해 충돌 위험성은 높아지게 되며, 만약 인프라 발전이 더딜 경우에 문제는 더욱 복잡해진다. 이러한 맥락 에서 기술 이전과 ‘안전 시스템’ 채택은 교통사고와 관련된 사망률, 이환율, 장애의 급격한 감소라는 상당한 범위의 성과를 가져올 것이다(44).
(표 3.2) 도로 충돌 사고에 대한 개입 대책 요약 광범위하게 시행 및 이행되어야 할 개입 대책 가능성은 있지만 추가적인 평가 비효율적이며 이롭지 않으므로 필요 제거 필요
음주 운전 관련 법률 제정 및 시행(모든 도로 운전자 대상 몸집이 큰 아동을 위한 아동용 도로 환경이나 차량을 안전하게 혈중알코올농도 0.05g/dl로 제한하고 초보 운전자는 더 좌석(booster seats) 사용 (35) 만들기 위한 법률 개정이나 조치 없이 진행되는 도로 안전 교육 강한 규정 적용, 음주 운전 불심 검문 시행, 주류 구매 최소 연령 적용, 판매 시점(POS) 규제 포함) (9) 안전벨트 사용 (36) 아동 승객 안전 구속 장치 사용 (35) 오토바이 헬멧 (34, 40) 속도 제한 규정 마련 및 시행 (속도 감시 카메라 사용, 학교나 병원 주위 속도 제한 포함) 오토바이 주간 전조등 운행 (9) 보행자와 이륜차를 자동차와 대형 차량으로부터 분리하는 도로 설계 (9, 12, 41) 지역 거점 교통량 저감 대책 (42) 등급별 운전면허증 제도 (43) 학교 기반 운전자 교육 (37, 38) 에어백을 갖춘 좌석에 아기나 아동을 안고 탑승 (39)
▶ 추락 교통사고 다음으로는 추락이 척수손상의 상당 부분을 차지한다. 척수손상의 결과로는 다음의 네 가지 유형이 확인된다. • 같은 높이에서 추락(예: 운동 경기 중, 카펫에 걸려서 넘어지는 경우, 무거운 하중을 운반하다 넘어지는 경우 (박스 3.2 참조)) • 1미터 이하의 높이에서 추락(예: 계단이나 낮은 담에서 추락) • 1미터 이상의 높이에서 추락(예: 건물이나 말에서 추락) • 낙하물에 의한 부상(예: 광산 갱도 붕괴)
3. 척수손상의 예방 61
많은 심각한 추락 사건이 작업 현장이나 운동 경기 도중, 혹은 안전하지 못한 집이나 거주 시설에서 발생하고 있다. 가정에서의 추락은 계단이나 기타 다른 장애물로 인해 발생하며, 특히 노인과 아주 어린 아이들에게서 빈번하게 발생한다. 추락 사고의 예방은 어수선한 현장, 늘어진 카펫, 평평하지 않은 바닥 정리 등을 통한 노인 주거 환경 개선과 조명 시설, 난간, 적절한 높이의 의자, 화장실, 침대 설치 등을 통해 향상될 수 있다(48). 신체 균형 감각을 평가하는 프로그램을 통해 위험에 노출된 사람들을 확인하고, 균형 감각 향상과 추락 예방을 위해 운동 수업과 같은 대책을 이행하고, 적절한 보조 기구의 제공(예: 보행기) 및 보조 기구 사용과 유지 관리에 대한 이용자 교육을 실시한다. 추락 예방에는 환경 개선, 관련 법과 규제 실시, 위험에 대한 대중 교육, 즉각적인 추락 후 관리 등이 포함된다. 개입 대책은 (표 3.3)에 요약·정리되어 있다. 박스 3.2. 머리로 무거운 물건을 운반 중 추락 부상 많은 저소득 국가에서 사람들은 머리로 물건을 운반한다. 포터들은 정기적으로 100kg에 달하는 물건을 머리로 운반 한다. 이런 운반 방식은 방글라데시(45), 가나(46), 시에라리온(47)에서 행해지고 있다. 방글라데시에서 머리로 무거운 물건을 운반하 물건이 떨어지면서 경수 손상을 당하는 사람들은 종종 포터나 농민으로 일하는 가난한 젊은 남성이다. 대부분의 경우 이들은 농작물, 비료, 쌀과 같은 것들을 운반한다. 머리로 물건을 운반하는 도중 물건이 떨어져 척수손상을 당할 위험은 업무 초보자나 미숙련 작업자, 아동, 그리고 하중이 50 넘는 경우 상당히 증가한다(45). 물건의 균형을 잡기 위해 항상 머리를 수직으로 세우고 운반을 하는 경우, 걸어가는 길 상황을 살기가 매우 힘들다. 평평하지 않거나 미끄러운 바닥이 종 물건을 떨어뜨리는 원인이 되곤 한다. 60% 정도의 추락 사건이 농촌 지역, 농장 혹은 진흙탕 길에서 발생한다. 물건이 떨어지면서 운반자는 균형을 게되고, 이때 물체의 추락 가속도와 물체의 무거운 하중이 결합하여 높은 에너지가 발생하는 사고로 이어진다. 물건의 무게와 운동량으로 인해 운반자는 무거운 물건을 머리에서 밀어내기가 힘들고 목을 정상적으로 움직일 수 없게 된다. 이런 경우 대체로 추락의 낮은 에너지가 높은 에너지로 바뀌면서 척수손상이 발생하는 것이다. 정부는 이런 문제의 심각성을 쉽게 간과하곤 한다. 왜냐하면 대체로 사고가 농촌 지역에서 발생하고 힘이 없는 가난한 사람들에게 발생하기 때문이다. 실업률이 높은 경우, 부상당한 근로자들은 대체 다. 그러나 당사자 개인과 가정에 있어 이런 부상의 영향은 실로 엄청나다. 물건을 운반하는 방식을 바꿈으로 사고를 예방할 수 있다. 외바퀴손수레를 이용해 오랫동안 안전하게 무거운 물건을 운반할 수 있다. 외바퀴손수레를 대안으로 권장하기 위해서는 정부의 규제 노력과 지원이 필요하며, 가능하면 외바퀴 손수레를 보다 매력적인 대안으로 고용주에게 소개하기 위해 정부 보조금도 필요하다. 작업 환경에서 발생할 수 있는 손상 예방 여부를 확인하는 과정에서 추락이 발생하는 메니즘(메카니즘)과 결국에는 손상으로 이어지는 일련의 사건에 대한 세밀한 분석이 필요하다.
▶ 폭력 총기(공격, 자해, 혹은 의도하지 않은 발포 등)의 사용은 가장 일반적인 척수손상의 원인 중 하나이다. 그리고 아프리카 사하라 남부 사막 지역은 전 세계에서 폭력으로 인한 척수손상의 비율이 가장 높은 지역으로 보고되고 있다(모든 척수손상 사례의 38%) (52).
62 척수 손상의 국제적 관점
(표 3.3) 추락 방지 대책 요약 추락의 분류 광범위하게 시행 및 이행되어야 할 개입 대책 어지러운 바닥, 늘어난 카펫 정리, 밝은 조명 설치, 난간, 적절한 높이의 가구 설치 가능성은 있지만 추가적인 평가 필요 비효율적이며 이롭지 않으므로 제거 필요 고립된 상황에서 진행하는 교육 프로그램
같은 높이에서 추락
고층 건물 창문에 보호막, 지붕에 건물 법령 시행(50) 1미터 이상 높이에서 추락. 고립된 상황에서 진행하는 안전 펜스 설치 (49) 농산물별로 추락 위험성을 어린 예: 고층 건물, 지붕, 나무 교육 프로그램 안전한 농산물 수확 장비* 아동의 부모에게 교육 (51) 무거운 물체에 의한 타격 혹은 충돌. 예: 머리로 무거운 가능하면 외바퀴 손수레 사용 물건 운반 머리로 운반하는 물건의 중량 및 작업자의 연령 제한을 담은 작업 현장 법률 적용*
* 대책은 모든 상황에 다 적용되지 않을 수도 있다. 특히, 노동법이 취약하거나 시행되지 않은 저소득 국가에서는 더욱 쉽지 않다.
칼과 날카로운 물체도 척수손상을 일으키는 관통형(penetrating) 부상으로 이어질 수 있다(53). 폭탄 폭발로 인한 척수손상 사례도 보고되고 있다(54). 소수의 경우 의도적인 자해의 형태로 높은 지역에 서 추락하는 경우도 있다. 예상할 수 있듯이, 제시된 근거에 따르면, 강력한 총기 규제 법안을 시행하고 총기 소지율이 낮은 지역은 총기로 인한 폭력 사건의 발생이 낮았다. 총기 휴대 금지, 등록 허가제, 총기 구매 최저 연령 설정, 구매자 배경 조사를 포함한 강력한 총기 허가제와 구매 정책이 호주, 오스트리아, 브라질, 뉴질랜드 등에서 시행되어 왔으며, 효과적인 방안임이 밝혀졌다. 콜롬비아와 엘살바도르에서 시행된 연구는 공공장소에서 총기 휴대를 금지하는 법이 범죄 사망률을 감소시킬 수도 있음을 보여 주고 있다(55). 사회적으로 취약한 환경에 놓인 젊은이들이 갱단에 관심을 갖지 않도록 주위를 환기시키는 등의 다양한 전략은 총기 수요를 낮추는 데에 일조할 수 있다. 칼과 기타 날카로운 물체와 관련해, 정부는 규제 조치와 더불어 이러한 무기의 폭력적 사용의 이면에 깔려 있는 사회·경제적 요인을 줄이기 위한 광범위한 전략도 함께 취해야 한다. 총기와 관련된 폭력을 줄이기 위한 노력에 비해 칼과 같은 날카로운 물건과 관련된 폭력을 줄이기 위한 노력에 대한 증거 사례들이 많지는 않다. 지금까지 관계 당국은 총기 규제에 사용되었던 유사한 조치들에 초점을 맞추어 왔다. 영국에서의 이런 조치들로 법률 개정(예: 접이식 칼(flick-knives) 금지, 구매 최저 연령 설정), 강력한 시행(‘불심 검문’ 조치), 자진 무기 반납 등을 시행하고 있다. 그러나 이런 조치 들의 성과가 아직은 명확하지 않다(55). 위에서 언급한 총과 칼 같은 치명적인 수단으로의 접근을 줄이기 위한 조치 이외에도 폭력을 방지 하기 위한 전략에는 다음과 같은 내용이 있다. 먼저, 아동 학대 및 나중에 성장해서 발생할 수 있는 다른 형태의 폭력을 예방하기 위해 아동과 부모, 아이를 돌봐 주는 사람들 간의 안전하고, 안정적이며, 성숙한 관계를 발전시켜야 한다. 두 번째로, 미래에 청년기 폭력에 연관되는 것을 막기 위해 아동과 3. 척수손상의 예방 63
청소년에게 삶의 기술을 개발시켜 줘야 한다. 세 번째로, 모든 형태의 폭력에서 위험 요인으로 작용 하는 무절제한 음주와 쉬운 음주를 줄여야 하며, 네 번째로, 여성에 대한 폭력 방지를 위해 양성평 등을 고양시켜야 한다. 다섯 번째로, 폭력을 조장하는 문화와 사회적 양식을 변화시키고, 마지막 으로 희생자 확인, 보호, 지원 프로그램을 시행해야 한다.
비외상성 척수손상의 원인
비외상성 척수손상 예방은 공공 보건과 질병 통제라는 양 영역에서의 광범위한 조치에 달려 있다. 예방 가능한 비외상성 척수손상의 원인은 다음과 같은 것이 있다. • 전염병 - 결핵(TB), 인체 면역 결핍 바이러스(HIV) • 비전염성 질환 – 암, 척추관 협착증의 원인인 골관절염과 같은 퇴행성 질환, 심혈관 질환 • 영양 결핍 – 신경관 결손, 비타민 B12 결핍 (56) • 의료 치료에 따른 합병증
각각의 상황과 관련된 몇몇 예방 전략을 아래에 기술하고 (표 3.4)에 요약하여 제시했다. 결핵과 같은 전염병은 고소득 국가보다 저·중소득 국가에서 더 흔히 발생한다. 결핵에 걸린 사람 중 1-2%에서 발생하는 척추 결핵은, 결핵의 유병률을 고려했을 때, 특정 환경에서는 척수 질환 상태에 따라 20%까지 늘어날 수도 있다(58, 64). 척추 결핵의 유병률은 HIV 감염 증가와 더불어 늘어났다 (65-67). 일반적인 임상 증상은 요통, 발열, 체중 감소, 신경학적 결손 등이다(68). 결핵의 결과 발생 하는 척수손상의 예방은 조기 발견과 치료에 달려 있다(69). 척추 결핵은 생검이나 자기 공명 영상법 (MRI)을 통해 확인할 수 있다. 그러나 이러한 서비스를 저·중소득 국가에서는 쉽게 이용할 수 없기 때문에, 진단이 늦어진다(70). 척추 결핵 치료는 일련의 과정 동안 철저하게 항결핵약제를 복용하거나, 진단에 따라서는 척추 수술을 시행할 수도 있다.
(표 3.4) 비외상성 척수손상 예방을 위한 개입 방법 요약 원인 광범위하게 시행 및 이행되어야 할 개입 대책 가능성은 있지만 추가적인 평가 필요
백신 (결핵균 백신: Bacille Calmette–Guérin) HIV에 대한 고활성 항레트로바이러스 치료 전염병 (예: 결핵균 TB, 인체 면역 결핍 바이러스 HIV) 척추 결핵의 조기 발견 및 치료(58) (HAART) (57) 암 이분척추증 조기 진단과 치료 밀과 옥수수 가루에 엽산과 기타 미량 원소를 출산 가능 기간 동안 간헐적으로 철분 및 첨가해 영양소 강화 (59), 임신 3개월 전후로 엽산 보충제 복용 (62, 63) 엽산 보충제 매일 복용 (60, 61). 알려진 내용 없음
척수 퇴행성 상태
64 척수 손상의 국제적 관점
척추에 전이된 암은 척수와 주위의 척추 구조에 압력을 가한다. 만약 이를 치료하지 않으면, 통증, 마비, 요실금으로 이어진다. 척추 암 전이 예방은 조기 발견 및 치료에 달려 있으며, 특히 유방암, 폐암, 전립선암인 경우에는 더욱 그렇다(71). 척추 종양이 발생한 경우 척수에 가해지는 압력을 줄이는 치료 법은 방사선 치료, 수술, 약물 요법, 화학 요법 등이 있다(72, 73) 비록 신경관 결손과 관련된 몇몇 좋은 치료법이 소개되고 있지만, 엽산을 늘려 섭취하는 것이 신경관 결손 예방에 있어 실용적이며 경제적인 영양 개입 방법으로 보여진다(74, 75). 이용 가능한 데이터의 메타 분석을 통해 이런 관찰 사실을 뒷받침할 수 있다(박스 3.3 참조). 약 63개국에서 의무적으로 밀가루에 엽산 (91)을 첨가한 영양소 강화를 통해 이분척추증의 발생률을 감소시켰다 (77, 82, 93). 임신 전후기 엽산 보충제 섭취 (임신 전후 3개월 )는 이분척추증을 포함한 신경관 결손을 가지고 태어나는 태아의 수를 줄일 수 있는 것으로 알려져 왔다(60, 61). 예를 들어, 이스라엘 연구에서는 3년간(2002-2004) 엽산 보충제를 섭취한 후에 출산한 태아 만 명당 이분척추증의 발생률이 14.4명에서 8.9명으로 줄어든 것으로 입증되었다(84). 인식 개선 캠페인을 통해 엽산 섭취에 대한 지식수준을 상당히 끌어 올릴 수 있으나 (94) 임신 전후 섭취 장려를 위한 지속적인 캠페인이 필요하다.
박스 3.3. 이분척추증예방법 이분척추증은 전 세계적으로 임신에 영향을 미치는 선천적 결함이다. 이분척추증 발생에 대한 체계적 검토 결과, 발생률은 브라질의 만 명당 2.3명 (76)에서부터 오만의 32.1명 (77)에 이르기까지 폭넓은 범위로 나타났다. 이 보고서를 위해 진행된 메타 분석에서는 전반적인 발생률을 만 명당 8.4명으로 계산했다(사용된 방식과 용어는 부록 C 참조). 이런 전반적인 발생률은 다양한 임신과 출생 형태 데이터를 사용한 연구의 발생률 편차를 반영하지 못하고 있다(2장 참조). 이분척추증의 전반적인 발생률은 출산 데이터를 이용한 연구에서는 만 명당 약 4.5명인 반면, 출산과 사산 데이터 혹은 출산, 사산, 임신 중절(TOP) 데이터를 이용한 연구에서는 만 명당 10.0명과 9.1명으로 각각 보고되었다. 엽산 보충제 섭취는 이분척추증과 신경관 결손(NTDs)에 의한 임신의 위험을 약 50%나 획기적으로 줄일 수 있는 것으로 알려졌다(78). 배아의 발육 단계 초기에(착상 후 28일) 신경관이 막히기 때문에 엽산 섭취의 이상적인 시기는 임신 전이다(79). 많은 사람들이 비계획적으로 임신을 하고 있으며, 안타깝게도 낮은 사회·경제적 지위와 낮은 교육 수준의 여성, 이주민 여성, 비계획적 임신을 한 여성 등과 같이 높은 위험 속에 놓여 있는 여성을 대상으로 한 보충제 섭취 장려 교육 캠페인이 비효율적으로 진행되고 있다(80). 이런 문제에 대응하기 위해, 몇몇 국가에서는 다양한 식품군에 엽산 영양 강화식품(FAFF) 도입을 의무적으로 규정한 법안 입법을 선택했다(81). FAFF는 엽산 수치를 끌어올리는 것으로 입증되었으며, 의무적으로 FAFF 규정을 도입한 이후, 미국, 캐나다, 서부 호주에서는 신경관 결손 유병률이 15-50% 정도 감소한 것으로 관찰되었다(82). FAFF의 입증된 효과에도 불구하고, FAFF는 전 세계적으로 도입되지 못했으며, 이를 의무적인 법률로 규정한 지역은 미주 대륙(베네수엘라 제외)과 호주가 유일하다. 또한 아프리카, 서부 태평양, 동남아시아의 일부 지역과 동부 지중해 대부분 지역도 의무적인 시행을 하고 있다. 유럽도 일부 지역에서도 FAFF를 의무적으로 도입하고 있으나 주로 동부 유럽 지역에서만 시행되고 있다(예: 몰도바 공화국, 우즈베키스탄, 카자흐스탄, 키르기스스탄, 투르크메니스탄).
3. 척수손상의 예방 65
출처: a (83); b (76); c (84); d (77); e (85); f (86); g (87); h (88); i (89); j (90); k (80). 위의 수치는 FAFF 섭취 이전과 이후의 이분척추증 발생률을 확인한 연구에서 수집한 데이터를 이용해 메타 분석을 한 결과이다. 메타 분석에 따르면 전반적인 효과 크기(발생률)는 연구 모집단의 출산과 사산을 포함한 연구만을 반영했을 때 0.43으로(95%의 신뢰 구간 0.39-0.63) 나타났다. 이 점을 고려해 볼 때, 전 세계적인 FAFF 법안 도입은 이분척추증 태아의 출생을 잠재적으로 연간 대략 38,000명 정도 줄일 수 있을 것으로 보인다(연구에 사용한 방법은 부록 D 참조). FAFF의 입증된 장점에도 불구하고, 많은 나라들, 특히 동부 유럽 국가에서는 FAFF 무조건적인 의무화를 국가 자율성의 부재로 인식하는 소수의 견해와 더불어 엽산 복용을 늘리는 경우 발생할 수 있는 건강상의 우려 사항 때문에 FAFF 법안 도입을 주저해 왔다. 현재 의무적인 FAFF 규정이 없는 많은 나라에서는 임신 가능 연령대의 여성들에게 엽산 보충제의 섭취를 권고하고 있으며, 비록 엽산이 가져오는 어느 정도의 장점에도 불구하고, 이는 주로 사회·경제적으로 높은 지위의 여성들에게만 제한적으로 시행되고 있다. 그러므로 충분한 정보에 바탕을 둔 정책 결정을 지원하고 부작용에 대한 우려 사항에 적절하게 대처하기 위한 추가 연구 진행이 필요하다.
66 척수 손상의 국제적 관점
척수손상과 관련된 활동, 장소, 상황
▶ 작업장(직장)에서의 손상 척수손상을 일으키는 상당 부분의 사고가 작업장 (95, 96) 특히, 건설, 농업, 광산 현장에서 발생하고 있다(95, 96). 작업 현장에서 가장 빈번히 발생하는 외부 원인은 높은 지역에서의 추락과 낙하물에 의한 충격과 충돌 등이다(96). 주요 작업 현장은 수평 갱도인 반면 초기 작업장 진입로가 수직이나 경사로로 이루어진 지하 광산 에서 척수와 기타 다른 심각한 부상이 종종 발생한다. 고소득 국가에서는 광업 활동이 잘 조직되고 높은 수준의 통제 속에 이루어지는 반면에 (97-99), 가난, 높은 실업률, 취약한 법 집행, 만연한 부 정부패로 얼룩진 저소득 국가에서는 광업 활동이 안전하지 못한 환경 속에서 이루어지곤 한다. 예를 들면, 아프리카에서는 부적절한 보건과 안전 메커니즘으로 운영되는 비공식 영세 규모의 광산의 수가 늘어나고 있다(100, 101). 광산 사고로 인한 손상은 관계 당국에 잘 보고가 되지 않고, 통계도 잘 관리가 되지 않을 수 있다. 그러나 광산 업계에서 행한 부상 예방 프로그램의 사례도 있다(박스 3.4 참조). 작업장에서 손상 예방을 위한 전략으로는 노동법, 분야별 안전 및 보건에 관한 실행 규칙 마련과 이행, 과학적 근거에 기반한 예방 활동 이행 등을 들 수 있다(103-106). 박스 3.4. 남아프리카 공화국의 광산 관련 사망과 부상 예방 남아프리카 공화국에서는 광산에서의 사망 및 부상에 관한 데이터 활용으로 부상 예방 프로그램의 결과물을 측정하고, 마일스톤(기록)을 확인하고, 미래 예방 목표를 설정할 수 있게 되었다. 정부가 추진한 체계적인 공공 보건 대책에는 다음의 내용이 담겨 있다. ∙문제의 심각성을 보여 주는 데이터 확보: 예 - 광산 위치별, 광물 종류(금, 석탄 등)에 따른 광산 사고 사망자 및 부상자 수. ∙위험 요소 확인: 지질학적, 수리학적, 지진학적, 그리고 광물 채굴 과정의 위험 요소. ∙위험 분석 및 평가: 각각의 위험 요소에 대해 노출 정도 여부, 노출의 가능성과 빈도, 발생 가능한 결과(척수손상과 같은 심각한 부상) 등을 확인. 그리고 위험 평가에는 위험의 수준을 결정하고 심각성의 정도를 등급화하는 내용을 담고 있음. ∙예방적 요인 확인: 위험을 제거 혹은 줄이기 위한 활동. ∙위험 통제 관련 개입 조치 설계 및 이행: 예 - 작업장 환경 구조 변경, 장비 디자인 점검, 위험 노출을 줄이기 위한 새로운 규범 마련, 조사와 안전 점검에 관한 정보와 훈련 제공. ∙강력한 규범 조항 시행 및 위반 사항 대처 ∙모니터와 검토: 변화된 환경이 향후 효율적인 통제 조치에 영향을 주지 않아야 함. 이러한 과정의 결과, 남아프리카 공화국 광산 업계에서 작업장 사망 및 심각한 부상 사례가 획기적으로 감소하였다. 아래 수치를 통해 광산 갱도 붕괴로 인한 사망률 - 부상의 가장 큰 단일 원인 - 이 2003년 1월 백만 작업 시간당 0.14에서 2011년 0.05로 떨어진 것을 확인할 수 있다. 같은 원인으로 인한 부상은 51% 감소해 2003년 백만 시간당 1.41에서 2011년 1월 0.72로 떨어졌다.
3. 척수손상의 예방 67
갱도 붕괴로 인한 남아프리카 공화국 광산 업계의 사망률과 부상률(2003-2011)
출처: 남아프리카 공화국 광업 자원부의 동의 아래 자료 재생산(102)
▶ 스포츠와 레크리에이션으로 인한 손상 척수손상의 사례가 몇몇 스포츠와 레크리에이션 활동에서도 보고되고 있다. 스포츠와 레크리에이션 환경에서의 척수손상 발생 메커니즘은 다음 내용을 포함한다. • 오토바이, 4륜 오토바이, 경주용 차량 같은 차량의 충돌 사고로 부상. • 럭비나 스키를 타던 중 같은 높이에서 떨어서 부상. • 낮은 수영장에서의 다이빙과 같이 1미터 이하의 높이에서 추락, 넘어지거나, 점프로 인한 부상과(박스 3.5 참조) 아동용 자전거에서 떨어져 부상. • 암벽 등반, 패러글라이딩 등과 같이 1미터 이상의 높이에서 추락, 넘어지거나, 점프, 밀려 떨어져 부상, 말이나 성인용 자전거에서 추락해 부상, 혹은 운동장 시설에서 추락해 부상.
박스 3.5. 척수손상의 원인인 다이빙 경수 손상 - 신경학적 수준 경수 4번에 해당하며, 사지 마비로 이어짐 - 은 다이빙으로 인한 척수손상의 가장 흔한 형태이다(107-109). 이러한 다이빙으로 인한 손상의 형태는 대부분 35세 이하의 남성에게서 발생한다(110-112) 다이빙으로 인한 척수손상과 관련된 원인으로는 다이버의 의식과 교육 부족, 낮은 물로 다이빙 (1.5m 이하), 지침과 안전 규칙에 대한 심도 있는 이해 부족, 수영장 풀의 특징적인 역경사 형태, 알코올 섭취 등이 있다(111, 113, 114). 예를 들어, 캐나다의 야외 수영장(in-ground)에서 발생하는 63%의 척수손상은 풀의 깊은 곳과 낮은 곳의 경계 부위의 역경사 지역에서 다이빙으로 인한 충돌로 발생한다(111). 기준에 맞는 설계 특징을 갖추고 올바르게 풀을 설계할 경우 척수손상의 위험을 낮출 수 있다. 올림픽 수영장 기준에 맞는 최소 2.7m 수심의 수영장 다이빙 보드에서는 다이빙으로 인한 척수손상 사례가 전혀 보고되지 않았다. 2010년 국제 수영 연맹은 올림픽 다이빙 시설의 경우, 1m 다이빙 보드는 최소 3.2m, 그리고 5m 다이빙 보드는 최소 10m의 수심을 요구하는 새로운 규정을 도입했다(115).
68 척수 손상의 국제적 관점
호주에서의 연구 결과에 따르면, 적절한 다이빙 조건(예: 3미터 이상의 깊은 수면에 대한 주지, 물 안의 물체 확인, 가설치 수영장(above-ground)에서 다이빙 금지 등)과 자세(엄지손가락을 감싸고, 팔을 머리 위로 뻗고, 방향을 잡고, 물을 타고 수영하는 기술 등)에 대한 교육(7-10분 정도)으로 너무 깊은 다이빙을 방지하고 안전한 손과 발의 자세를 잡는 데 효과적인 것으로 알려졌다(116). 다이빙 교육 프로그램 이후 후속 조치를 통해, 최초 다이빙 교육 20개월 이후에도 참석자들이 정보를 여전히 숙지하고 있으며 다이빙을 낮게 하는 것으로 확인되었다(117, 118). 다이빙으로 인한 척수손상을 줄이기 위해 다음의 주요 영역 개선이 필요하다. ∙민간과 공공 수영장에 국내, 국제적인 근거에 기반한 설계 기준(파라미터)을 수립하고 다이빙 안전 강화를 위해 적용해야 한다. ∙가정용 수영장의 판매자와 구매자는 다이빙의 위험성과 낮은 물에 머리부터 입수하는 방식의 위험 요인을 강조하는 수영장 안전 교육을 받아야 한다. ∙학교와 지역 사회에서 위험에 노출된 사람들은 상해 위험 안전에 대한 포괄적이고 근거에 기반한 교육을 이수해야 한다.
전 세계적으로 스포츠로 인한 손상이 전체 척수손상 사례의 7%-18%를 차지한다는 연구 결과가 발표되었다(119-121). 럭비 경기 관련 척수손상 예방은 주요한 팀 스포츠라는 맥락 속에서 성공적 으로 이행되었던 손상 방지의 뛰어난 사례라고 할 수 있다(박스 3.6 참조). 박스 3.6. 럭비로 인한 척수손상 예방에 있어 선도적인 뉴질랜드의 사례 럭비는 선수들 간에 물리적인 신체 접촉이 많은 팀 스포츠이다. 1990년대 중반부터 뉴질랜드와 남아프리카 공화국같이 럭비 경기를 하는 국가에서는 필드에서 경기 도중 발생하는 척수손상을 포함해 심각한 비치명적 부상에 대한 인식이 늘어났다. 이런 결과로 문제를 계량화하기 위해 데이터 수집(부상 감시)이 진행되었다. 사고 보상 위원회(Accident Compensation Commission: ACC)와 뉴질랜드 럭비 협회는 “신체 접촉(contact) 스포츠 라는 맥락 속에서 척수손상 근절”을 위한 견해를 가지고 협력하였다. 부상이 발생한 상황을 연구한 자료에서 다음의 위험 요인이 확인되었다. • 상당히 위험한 경기 과정(스크럼, 태클, 러크/몰: 럭비에서 특히 물리적 충돌이 심한 자세), • 선수의 빈약한 체력 수준, 높은 태클, 태클 과정에서 턱이 지면에 충돌하는 상황을 포함해 상당한 위험을 동반하는 상황과 행동 •부적절한 경기장의 응급처치 상황 등이다(122). 뉴질랜드에서 1976년에서 2005년 사이 럭비로 인한 척수손상의 빈도는 아래의 첫 번째 그래프에서 나타난다. 이러한 패턴에 대처하기 위해, 뉴질랜드에서 럭비 스마트(Rugby Smart)라고 불리는 포괄적 예방 프로그램이 시작되었다. 이 프로그램은 다음과 같은 대책을 담고 있다. 코치·심판·선수에 대한 안전 워크숍 의무화, 안전 정보와 자료를 배포 하기 위한 세미나 의무화, 안전 관련 웹사이트 구축, 코치와 심판이 사용하는 사이드라인 뇌진탕 체크 카드와 같은 부상 예방 도구 제공, 모든 코치는 매년 럭비 스마트 프로그램 과정을 의무적으로 이수해야 하도록 했는데, 이 결과 거의 100%의 코치와 심판들이 이 프로그램을 이수하였다(123). 1996-2000년에 17건이었던 척수손상 발생 사례가 2001-2005년에는 8건으로 줄어든 것에서 알 수 있듯이 럭비 스마트 프로그램 도입과 척수손상 발생 빈도 감소 간에 상관관계가 있음이 증명되었다(123). 아래 두 번째 그래프에서 나타 나듯이 럭비 스마트 프로그램이 진행된 지난 11년 동안 연평균 두 건의 심각한 부상 사례만이 보고되며 척수손상 발생 빈도는 지속적으로 낮은 수준을 유지해 왔다.
3. 척수손상의 예방 69
경기 중 높은 위험 상황에 따른 럭비로 인한 척수손상 발생 빈도
출처: BMJ Publishing Group Ltd. 출판사의 동의 아래 자료 재생산 (123) 럭비 스마트 프로그램 도입 이후 뉴질랜드에서 럭비로 인한 심각한 부상의 감소
출처: 뉴질랜드 럭비 협회와 사고보상위원회(ACC)가 공동으로 출판한 럭비스마트 내용 동의 아래 인용. 이러한 접근법은 남아프리카 공화국에도 적용되었다. 2008년 남아프리카 공화국 럭비선수 기금은 복스마트 (BokSmart)를 도입했다. 이를 통해, 교육을 개선하고 부실한 응급 처치로 인한 부상 악화를 막기 위해 현장 응급 처치 도구와 장비를 제공할 수 있는 의료 지원 인력이나 훈련 받은 인력을 파견할 수 있게 되었다. 이 외에도 코칭과 선수 선발 과정의 개선, (“크라우치(Crouch, 크려), 터치(Touch, 손 대), 포즈(Pause, 멈춰), 인게이지(engage,스크럼 형성)"의 도입을 통한 스크럼 형성 규칙과 같은) 경기 규칙의 변화, 안전 장비 채택 등의 변화가 있었다(125).
70 척수 손상의 국제적 관점
대부분의 교육적인 대책이 그러하듯이, 효율성 여부의 문제는 여전히 논란이 되고 있으며, 이에 대해 지속적인 연구가 필요하다. 예방 전략에는 자격 요건 표준화를 통한 위험 감소, 교육 제공, 적절한 법률과 기준의 제정 및 시행 등이 포함된다. 몇몇 스포츠의 전반적인 부상 방지 대책은 (표 3.5)에 나타나 있다.
▶ 자연재해 척수손상의 원인이 될 수 있는 산사태, 화산 폭발과 같은 지진 및 기타 자연재해의 범위는 몇몇 요인에 의해 영향을 받는다. 이러한 요인에는 건물의 형태, 재난의 발생 시각, 재난이 영향을 미치는 지역의 인구 밀도 등이 포함된다(131, 132). 돌로 쌓거나 비강화 석조 건축물로 지어진 건물 안에 있던 사람은 나무로 만든 건물 안에 있던 사람과 비교했을 때, 부상의 위험이 높다(131). 대다수의 사람들이 위험한 건물 내부에 있을 때 지진이 발생한 경우, 부상자 숫자가 늘어날 가능성이 크다. 자연재해를 예방하기란 쉽지 않지만, 내진 설계 구조를 의무화한 적절한 건축물 규정을 시행함으로써 건물 붕괴를 줄일 수 있다.
(표 3.5) 스포츠 활동 중 척수손상 예방을 위한 대책 요약 스포츠 럭비 스키와 스노보드 승마 다이빙 광범위하게 시행 및 이행되어야 할 대책 평가 비효율적이며 이롭지 않으므로 제거가 필요
코치와 심판에 대한 안전 교육 의무화 위험한 경기 과정에 대한 안전 규칙(122, (123) 125) 안전 조치에 대한 교육과 트레이닝, 예 알파인 책임코드(126), 스키 코스에 위험 표식 및 위험물 주위에 장벽 설치(126) 안전 조끼(127) 안전한 수영장 설계에 관한 법률 제정 및 교육적인 대책, 다이빙 지침(116–118, 128) 이행. 예 수심, 조명, 다이빙보드의 높이와 탄성(114) 수상 스포츠 간에 주류 섭취 금지 아동은 말 안장에 확실히 고정
일반적 필드 적절한 표면 물질의 두께, 장비의 높이, 스포츠 유지보수와 관련된 운동장 기준(129) 심해 다이빙 감압 장비 조기 배치 (130)
3. 척수손상의 예방 71
결론과 제안
척수손상은 대부분 예측 가능하며 예방 가능하다. 지난 30년 동안 상당한 연구와 발전이 이루어져 교통사고, 추락, 폭력과 같은 다양한 원인 및 직업과 스포츠 활동으로 인한 척수손상의 발생을 줄일 수 있는 입증된 대책이 마련되었다. 이제는 효과적으로 알려진 대책과 이를 실질적으로 이행하는 것 사이의 격차가 무엇인지 고민해야 할 때이다. 저·중소득 국가에 적합한 척수손상 예방 프로그램의 사례를 발견하고 기록하기 위해 시도했음에도 불구하고, 사례들은 상당히 적은 편이다. 이는 이 장에서 소개한 개입 대책들이 저·중소득 국가에는 적용되지 않는다는 것을 의미하는 것은 아니다. 사실상 많은 부분 적용되고 있다. 그러나 지역의 상황과 조건에 맞도록 시험하고 채택하는 전략이 필요하다. 다음의 영역에서 행동을 취할 수 있도록 정부 및 예방과 관련된 기타 기관을 독려해야 한다. • 척수손상을 고려해 효율성이 입증된 일차적인 예방 프로그램에 지속적으로 투자한다(예: 차량의 머리 안전 구속 장치의 구체적인 높이 요건을 명시한 의무 기준 요구). 나아가 높은 위험을 수반하는 직업이나 스포츠 활동에 있어 척수손상을 예방하고 관리할 수 있는 구체적인 행동 계획을 이행한다(예: 럭비 부상 방지를 위한 교육 프로 그램) • 전염성 질환, 비전염성 질환, 영양 결핍과 같은 비외상성 척수손상 위험에 노출된 사람들을 확인하고 치료하기 위한 의료 시스템을 강화한다. • 이미 척수손상을 입은 사람들의 품위를 해치지 않는 방식으로 척수손상 예방에 대한 인식을 개선한다. • 척수손상 예방 연구에 있어 우선순위를 정한다. 확실한 근거가 부족한 예방 조치가 상당히 많이 시행되고 있다 (예: 다이빙 수업). 위험 요인 분석과 개입 대책에 대한 평가는 어떤 개입 조치가 효율적이고 따라서 장려되어야 하는지, 그리고 어떤 조치가 비효율적이고 위험해서 자제되어야 하는지 결정하는 데 핵심이 된다. • 모든 관련 분야와 이해 당사자를 포함시킨다. 척수손상과 관련된 다양한 원인, 활동, 환경 등에 대처하는 데 있어 인프라, 건강, 산업, 스포츠, 교육 등 다수 분야의 담당자가 척수손상 예방 노력에 참여해야 한다. 하나의 주체가 대책 이행을 확실히 하기 위해 주도적으로 일을 진행하고, 다양한 분야의 지원이 지속적으로 제공되어야 한다. • 예방 프로그램 담당 기관을 격려해 연구자들과 협력하도록 하고, 이를 통해 발생률 데이터를 예방 전략에 활용 하도록 하며, 연구자들은 예방 캠페인의 결과 모니터링 및 평가하는 과정에 함께 참여하도록 한다.
72 척수 손상의 국제적 관점
▶ 참고 문헌 1. Tharion G, Nagarajan G, Bhattacharji S, eds. Prevention of spinal cord injury. In: Guidelines for care of persons with spinal cord injury in the community. Vellore, Christian Medical College. 2009. 2. Shakespeare T. Still a health issue. Disability and Health Journal, 2012, 5:129-131. doi: http://dx.doi.org/ 10.1016/j.dhjo.2012.04.002 PMID:22726851 3. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/disabilities-convention.htm, accessed 9 May 2012) 4. Wang CC. Portraying stigmatized conditions: disabling images in public health. Journal of Health Communication, 1998, 3:149-159. doi: http://dx.doi.org/10.1080/108107398127436 PMID:10977251 5. NSCISC. Annual report for the spinal cord injury model systems:2008 Birmingham, AL, National Spinal Cord Injury Statistical Centre, 2008 (https://www.nscisc.uab.edu/PublicDocuments/reports/ pdf/2008%20NSCISC%20Annual%20Statistical%20Report%20-%20Complete%20Public%20Version.pdf, accessed 9 April 2012). 6. Henley G. Spinal cord injury, 1999−2005. NISU briefing No. 14, Cat. No. INJCAT 124. Canberra, Australian Institute of Health and Welfare, 2009 (http://www.aihw.gov.au/publication-detail/?id=6442468241, accessed 9 April 2012). 7. Sekhon LH, Fehlings MG. Epidemiology, demographics, and pathophysiology of acute spinal cord injury. Spine, 2001, 26 Suppl:S2-S12. doi: http://dx.doi.org/10.1097/00007632-200112151-00002 PMID: 11805601 8. Haddon W. Advances in the epidemiology of injuries as a basis for public health policy. Public Health
Reports, 1980, 95:411-421. PMID:7422807 9. Peden M et al., eds. World report on road traffic injury prevention. Geneva, World Health Organization, 2004. 10. WHO. Global status report on road safety: time for action. Geneva, World Health Organization, 2009 (www.who.int/violence_injury_prevention/road_safety_status/2009, accessed 9 April 2012). 11. Newton J. Road safety – Partnership programme. Shared responsibility. Western Australia, Office of Road Safety, 2008. 12. OECD. Towards zero. Ambitious road safety targets and the safe system approach. Paris, Organisation for Economic Co-operation and Development, 2008 (http://www.oecd-ilibrary.org/ transport/towards-zero_9789282101964-en, accessed 5 May 2012). 13. Rasouli MR. Preventing motor vehicle crashes related spine injuries in children. World Journal of Pediatrics, 2011, 7:311-317. doi: http://dx.doi.org/10.1007/s12519-011-0327-z PMID:22015724 14. Elvik R. Area-wide urban traffic calming schemes: a meta-analysis of safety effects. Accident; Analysis and Prevention, 2001, 33:327-336. doi: http://dx.doi.org/10.1016/S0001-4575(00)00046-4 PMID:11235794 15. Mohan D, Tiwari G. Road safety in low-income countries: issues and concerns regarding technology transfer from highincome countries. In: Reflections on the transfer of traffic safety knowledge to
motorising nations. Melbourne, Global Traffic Safety Trust, 1998:27–56.
3. 척수손상의 예방 73
16. O’Connor PJ, Brown D. Relative risk of spinal cord injury in road crashes involving seriously injured occupants of light passenger vehicles. Accident; Analysis and Prevention, 2006, 38:1081-1086. doi: http://dx.doi.org/10.1016/j.aap.2006.04.013 PMID:16756930 17. Haworth N et al. Characteristics of fatal single vehicle crashes. Report 120. Clayton, Monash University Accident Research Centre, 1997. 18. McElhaney JH et al. Biomechanical aspects of cervical trauma. In: Nahum AM, Melvin JW, eds.
Accidental injury – biomechanics and prevention. 2nd ed. New York, NY, Springer-Verlag, 2002. 19. Viano DC, Chantal S, Parenteau CS. Analysis of head impacts causing neck compression injury.
Traffic Injury Prevention, 2008, 9:144-152. doi: http://dx.doi.org/10.1080/15389580801894940 PMID: 18398778 20. O’Neill B. Preventing passenger vehicle occupant injuries by vehicle design − a historical perspective from IIHS. Traffic Injury Prevention, 10.1080/15389580802486225 PMID:19333823 2009, 10:113-126. doi: http://dx.doi.org/
21. MacLennan PA et al. Vehicle rollover risk and electronic stability control systems. Injury Prevention, 2008, 14:154-158. doi: http://dx.doi.org/10.1136/ip.2007.016576 PMID:18523106 22. European Road Safety Observatory. eSafety. Brussels, European Commission, 2006 (http://ec.europa.eu/ transport/wcm/road_safety/erso/knowledge/Fixed/04_esave/esafety.pdf, accessed 21 March 2012). 23. Corben B et al. The general effectiveness of countermeasures for crashes into fixed roadside objects. Report 111. Clayton, Monash University Accident Research Centre, 1997. 24. Soloman L, Warwick D, Nayagam S. Apley’s system of orthopaedics and fractures, 8th ed. London, Arnold, 2001. 25. Viano DC. Seat design principles to reduce neck injuries in rear impacts. Traffic Injury Prevention, 2008, 9:552-560. doi: http://dx.doi.org/10.1080/15389580802381939 PMID:19058102 26. Farmer CM et al. Relationship of dynamic seat ratings to real-world neck injury rates. Traffic Injury Prevention, 2008, 9:561-567. doi: http://dx.doi.org/10.1080/15389580802393041 PMID:1905810327. Fitzharris M et al. Crash-based evaluation of Australian Design Rule 69: (Full FrontalIimpact
Occupant Protection). Canberra, Australian Transport Safety Bureau, 2006 (http://www.infrastructure. gov.au/roads/safety/publications/2006/pdf/Grant_Report200603.pdf?bcsi_scan_C7A381BA8BD8A412=0 &bcsi_scan_filename=Grant_Report200603.pdf, accessed 21 March 2012). 28. Morris A, Welsh R, Frampton R. An overview of requirements for the crash protection of older drivers. Annu Proc Assoc Adv Automto Med, 2002, 46:141–156. 29. Ferguson SA, Schneider LW. An overview of frontal air bag performance with changes in frontal crash-test requirements: findings of the Blue Ribbon Panel for the evaluation of advanced technology air bags. Traffic Injury Prevention, 2008, 9:421-431. doi: http://dx.doi.org/10.1080/ 15389580802046250 PMID:18836952 30. Lie A et al. Intelligent seat belt reminders − do they change driver seat belt use in Europe? Traffic
Injury Prevention, 2008, 9:446-449. doi: http://dx.doi.org/10.1080/15389580802149690 PMID:18836955
74 척수 손상의 국제적 관점
31. Winston FK, Durbin D. When “buckle up” is not enough: enhancing the safety of children in motor vehicles. Leonard Davis Institute Issue Brief, 2000, 5:1–4. 32. Achildi O, Betz RR, Grewal H. Lapbelt injuries and the seatbelt syndrome in pediatric spinal cord injury. The Journal of Spinal Cord Medicine, 2007, 30 Suppl. 1:S21-S24. PMID:17874682 33. Durbin DR et al. Effects of seating position and appropriate restraint use on the risk of injury to children in motor vehicle crashes. Pediatrics, 2005, 115:e305-e309. doi: http://dx.doi.org/10.1542/ peds.2004-1522 PMID:15741356 34. Liu BC et al. Helmets for preventing injury in motorcycle riders. Cochrane database of systematic reviews, 2008, 23:CD004333. 35. Zaza S et al. Reviews of evidence regarding interventions to increase use of child safety seats. American Journal of Preventive Medicine, 2001, 21 Suppl:31-47. doi: http://dx.doi.org/10.1016/ S0749-3797(01)00377-4 PMID:11691560 36. National Highway Traffic Safety Administration. Traffic safety facts 2004: occupant protection. Washington, DC, National Highway Traffic Safety Administration, 2004. 37. Ian R et al. School based driver education for the prevention of traffic crashes. Cochrane database
of systematic reviews, 2001, 3:CD003201. PMID:11687049 38. Dellinger A et al. Interventions to prevent motor vehicle injuries. In: Doll L et al., eds. Handbook
of injury and violence prevention. New York, NY, Springer, 2007:55–79. 39. Cummings P et al. Air bags and passenger fatality according to passenger age and restraint use.
Epidemiology (Cambridge, Mass.), 2002, 13:525-532. doi: http://dx.doi.org/10.1097/00001648-20020900000007 PMID:12192221 40. Passmore JW et al. The formulation and implementation of a national helmet law: a case study from Viet Nam. Bulletin of the World Health Organization, 2010, 88:783-787. doi: http://dx.doi.org/10.2471/ BLT.09.071662 PMID:20931064 41. Elvik R, Vaa T, eds. The handbook of road safety measures. Amsterdam, Elsevier Science Ltd, 2004. 42. Bunn F et al. Area-wide traffic calming for preventing traffic related injuries. Cochrane database of systematic reviews, 2003, 1:CD003110. PMID:12535454 43. Hedlund J, Compton R. Graduated driver licensing research in 2004 and 2005. Journal of Safety Research, 2005, 36:109-119. doi: http://dx.doi.org/10.1016/j.jsr.2005.02.001 PMID:15896351 44. Stevenson M et al. Reducing the burden of road traffic injury: translating high-income country interventions to middle-income and low-income countries. Injury Prevention, 2008, 14:284-289. doi: http://dx.doi.org/10.1136/ip.2008.018820 PMID:18836043 45. Hoque MF, Grangeon C, Reed K. Spinal cord lesions in Bangladesh: an epidemiological study 1994− 1995. Spinal Cord, 1999, 37:858-861. doi: http://dx.doi.org/10.1038/sj.sc.3100938 PMID:10602529 46. Jumah KB, Nyame PK. Relationship between load carrying on the head and cervical spondylosis in Ghanaians. West African Journal of Medicine, 1994, 13:181-182. PMID:7841112 47. Jager HJ et al. Degenerative changes in the cervical spine and load-carrying on the head. Skeletal Radiology, 1997, 26:475-481. doi: http://dx.doi.org/10.1007/s002560050269 PMID:9297752
3. 척수손상의 예방 75
48. Demura S et al. Selection of useful items for fall risk screening for community dwelling Japanese elderly from the perspective of fall experience, physical function, and age level differences. Archives of Gerontology and Geriatrics, 2011, 53:123-130. doi: http://dx.doi.org/10.1016/j.archger.2010.11.012 PMID:21131069 49. Spiegel CN, Lindaman FC. Children can’t fly: a program to prevent childhood morbidity and mortality from window falls. American Journal of Public Health, 1977, 67:1143-1147. doi: http://dx.doi.org/ 10.2105/AJPH.67.12.1143 PMID:596496 50. Barlow B et al. Ten years of experience with falls from a height in children. Journal of Pediatric Surgery, 1983, 18:509-511. doi: http://dx.doi.org/10.1016/S0022-3468(83)80210-3 PMID:6620098 51. Peden M et al., eds. World report on child injury prevention. Geneva, World Health Organization, 2008. 52. Cripps RA et al. A global map for traumatic spinal cord injury epidemiology: towards a living data repository for injury prevention. Spinal Cord, 2011, 49:493-501. doi: http://dx.doi.org/10.1038/ sc.2010.146 PMID:21102572 53. Krug E et al., eds. World report on violence and health. Geneva, World Health Organization, 2002. 54. Zeilig G et al. Civilian spinal cord injuries due to terror explosions. Spinal Cord, 2010, 48:814-818. doi: http://dx.doi.org/10.1038/sc.2010.22 PMID:20309003 55. WHO. Guns, knives, and pesticides: reducing access to lethal means. Geneva, World Health Organization, 2009. 56. Wee JYM, Schwarz R. An international comparative study assessing impairment, activities, and participation in spinal cord injury rehabilitation – a pilot study. Asia Pacific Disability Rehabilitation Journal, 2004, 15:42-52. 57. Staudinger R, Henry K. Remission of HIV myelopathy after highly active antiretroviral therapy. Neurology, 2000, 54:267-268. doi: http://dx.doi.org/10.1212/WNL.54.1.267 PMID:10636172 58. Jutte PC, van Loenhout-Rooyackers JH. Routine surgery in addition to chemotherapy for treating spinal tuberculosis. Cochrane Database of Systematic Reviews, 2006, 25:CD004532. CD004532.pub2 59. WHO/FAO/UNICEF/GAIN/MI/ FFI. Recommendations on wheat and maize flour fortification. Meeting Report: Interim Consensus Statement. Geneva, World Health Organization, 2009 (http://www.who.int/ nutrition/publications/micronutrients/wheat_maize_fort.pdf accessed 28 May 2012). 60. De-Regil LM, Fernandez-Gaxiola AC, Dowswell T, Pena-Rosas JP. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database of Systematic Reviews, 2010, 6:(10)CD007950. Review. PubMed PMID: 20927767 PMID:20927767 61. Toriello HV. Policy and Practice Guideline Committee of the American College of Medical Genetics. Policy statement on folic acid and neural tube defects. Genetics in Medicine, 2011, 13:593-596. doi: http://dx.doi.org/10.1097/GIM.0b013e31821d4188 PMID:21552133 62. Fernandez-Gaxiola AC, De-Regil LM. Intermittent iron supplementation for reducing anaemia and its associated impairments in menstruating women. Cochrane Database of Systematic Reviews, 2011, 7:(12)CD009218. Review. PubMed PMID: 22161448 PMID:22161448
76 척수 손상의 국제적 관점
63. WHO. Guideline: Intermittent iron and folic acid supplementation in menstruating women. Geneva, World Health Organization, 2011. 64. Godlwana L et al. Incidence and profile of spinal tuberculosis in patients at the only public hospital admitting such patients in KwaZulu-Natal. Spinal Cord, 2008, 46:372-374. doi: http://dx.doi.org/ 10.1038/sj.sc.3102150 PMID:18317491 65. Moon MS. Tuberculosis of the spine. Controversies and a new challenge. Spine, 1997, 22:1791-1797. doi: http://dx.doi.org/10.1097/00007632-199708010-00022 PMID:9259793 66. Dye C, Williams BG. The population dynamics and control of tuberculosis. Science, 2010, 328:856-861. doi: http://dx.doi.org/10.1126/science.1185449 PMID:20466923 67. Chaudhary M et al. Diagnosis of tuberculosis in an era of HIV pandemic: a review of current status and future prospects. Indian Journal of Medical Microbiology, 2010, 28:281-289. doi: http://dx.doi.org/ 10.4103/0255-0857.71805 PMID:20966555 68. Rasit AH, Razak M, Ting FS. The pattern of spinal tuberculosis in Sarawak General Hospital. The
Medical Journal of Malaysia, 2001, 56:143-150. PMID:11771073 69. Harries AD et al. The HIV-associated tuberculosis epidemic − when will we act? Lancet, 2010, 375:1906-1919. doi: http://dx.doi.org/10.1016/S0140-6736(10)60409-6 PMID:20488516 70. Cormican L et al. Current difficulties in the diagnosis and management of spinal tuberculosis.
Postgraduate Medical Journal, 2006, 82:46-51. doi: http://dx.doi.org/10.1136/pgmj.2005.032862 PMID:16397080 71. Maccauro G et al. Physiopathology of spine metastasis − review article. International Journal of Surgical Oncology, 2011,Article ID:107969, 8 pages doi: http://dx.doi.org/10.1155/2011/107969 PMID:22312491 72. George R et al. Interventions for the treatment of metastatic extradural spinal cord compression in adults. Cochrane Database of Systematic Reviews, 2008, 4:CD006716. CD006716.pub2 PMID:18843728 73. Molina CA, Gokaslan Z, Sciubba D. A systematic review of the current role of minimally invasive spine surgery in the management of metastatic spine disease. International Journal of Surgical Oncology, 2011, doi: http://dx.doi.org/10.1155/2011/598148 PMID:22312514 74. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/ s00431-011-1492-8 PMID:21594574 75. Nikkila A, Rydhstrom H, Kallen B. The incidence of spina bifida in Sweden 1973–2003: the effect of prenatal diagnosis. European Journal of Public Health, 2006, 16:660-662. doi: http://dx.doi.org/ 10.1093/eurpub/ckl053 PMID:16672253 76. Orioli IM et al. Effects of folic acid fortification on spina bifida prevalence in Brazil. Birth Defects
Research. Part A, Clinical and Molecular Teratology, 2011, 91:831-835. doi: http://dx.doi.org/10.1002/ bdra.20830 PMID:21630426 77. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification
3. 척수손상의 예방 77
of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 78. Centers for Disease Control and Prevention. Recommendations for the use of folic acid to reduce the number of cases of spina bifida and other neural tube defects. MMWR. Morbidity and Mortality Weekly Report, 1992, 41(RR-14):1-7. 79. Crider KS, Bailey L, Berry R. Folic acid food fortification – its history, effect, concerns, and future directions. Nutrients, 2011, 3:370-384. 80. Ray JG et al. Association of neural tube defects and folic acid food fortification in Canada. Lancet, 2002, 360:2047-2048. doi: http://dx.doi.org/10.1016/S0140-6736(02)11994-5 PMID:12504403 81. Flour Fortification Initiative website (http://www.ffinetwork.org/country_profiles/index.php, accessed 17 May 2013). 82. Cornel MC, de Smit DJ, de Jong-van den Berg LTW. Folic acid – the scientific debate as a base for public policy. Reproductive Toxicology (Elmsford, NY), 2005, 20:411-415. doi: http://dx.doi.org/10.1016/ j.reprotox.2005.03.015 PMID:15978774 83. Centers for Disease Control and Prevention. Racial/ethnic differences in the birth prevalence of spina bifida – United States, 1995–2005. MMWR. Morbidity and Mortality Weekly Report, 2009, 57:1409-1413. PMID:19129744 84. Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 85. Barboza Arguello ML, Umana Solis LM. Impact of the fortification of food with folic acid on neural tube defects in Costa Rica. Revista Panamericana de Salud Publica, 2011, 30:1-6. PMID:22159644 86. De Wals P et al. Reduction in neural-tube defects after folic acid fortification in Canada. The New England Journal of Medicine, 2007, 357:135-142. doi: http://dx.doi.org/10.1056/NEJMoa067103 PMID:17625125 87. Lopez-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. (– Chile). American Journal of Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi.org/10.1002/ajmg.a.33479 PMID: 20814949 88. Lopez-Camelo JS, Castilla EE, Orioli IM. Folic acid flour fortification: impact on the frequencies of 52 congenital anomaly types in three South American countries. (– Argentina). American Journal of
Medical Genetics. Part A, 2010, 152A:2444-2458. doi: http://dx.doi.org/10.1002/ajmg.a.33479 PMID:20814949 89. Sayed AR et al. Decline in the prevalence of neural tube defects following folic acid fortification and its cost-benefit in South Africa. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2008, 82:211-216. doi: http://dx.doi.org/10.1002/bdra.20442 PMID:18338391 90. Persad VL et al. Incidence of open neural tube defects in Nova Scotia after folic acid fortification. Canadian Medical Association Journal, 2002, 167:241-245. PMID:12186168
78 척수 손상의 국제적 관점
91. Flour Fortification Initiative. FFI Database. Atlanta, 2012 (http://www.sph.emory.edu/wheatflour/ globalmap.php, accessed 28 may 2012). 92. Williams LJ et al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995– 2002. Pediatrics, 2005, 116:580-586. doi: http://dx.doi.org/10.1542/peds.2005-0592 PMID:16140696 93. Berry RJ, Bailey L, Mulinare J, Bower C. Folic Acid Working Group. Fortification of flour with folic acid. Food and Nutrition Bulletin, 2010, 31:(1 Suppl)S22-35. Review. PubMed PMID: 20629350 PMID:20629350 94. Rofail D et al. Factors contributing to the success of folic acid public health campaigns. Journal of Public Health, 2012, 34:90-99. doi: http://dx.doi.org/10.1093/pubmed/fdr048 PMID:21727078 95. O’Connor P. Work related spinal cord injury, Australia 1986–1997. Injury Prevention, 2001, 7:29-34. doi: http://dx.doi. org/10.1136/ip.7.1.29 PMID:11289531 96. Correa GI et al. Work-related traumatic spinal cord lesions in Chile, a 20-year epidemiological analysis. Spinal Cord, 2011, 49:196-199. doi: http://dx.doi.org/10.1038/sc.2010.71 PMID:20548320 97. Sanmiquel L et al. Analysis of work related accidents in the Spanish mining sector from 1982−2006. Journal of Safety Research, 2010, 41:1-7. doi: http://dx.doi.org/10.1016/j.jsr.2009.09.008 PMID: 20226944 98. Hodous TK, Layne LA. Injuries in the mining industry. Occupational Medicine, 1993, 8:171-184. PMID:8456346 99. Boden LI. Government regulation of occupational safety: underground coal mine accidents 1973−75.
American Journal of Public Health, 1985, 75:497-501. doi: http://dx.doi.org/10.2105/AJPH.75.5.497 PMID:3985237 100. ILO. Social and labour issues in small-scale mines, Geneva, International Labour Organization, 1999, (http://www.ilo.org/public/english/dialogue/sector/techmeet/tmssm99/tmssmr.htm, accessed 5 October 2012) 101. ILO. Accelerating action against child labour. Report of the Director-General, International Labour Conference, 99th session, 2010, Geneva, International Labour Organization (http://www.ilo.org/global/ resources/WCMS_126752/lang--en/index.htm, accessed 5 October 2012). 102. Department of Mineral Resources. 2003–2011 Falls of ground. Pretoria, Republic of South Africa, Department of Mineral Resources, 2011 (http://www.dmr.gov.za/publications/summary/134-2003 — 2011/410-2003-2011falls-of-ground-accidentsgraph.html, accessed 15 March 2012). 103. ILO. Code of practice on safety and health in underground coalmines. Meeting of Experts on Safety and Health in Coal Mines, Geneva, 8−13 May 2006. Geneva, International Labour Organization, 2006. 104. ILO. Code of practice on safety and health in agriculture. Meeting of Experts to Adopt a Code of Practice on Safety and Health in Agriculture, Geneva, 25−29 October 2010. Geneva, International Labour Organization, 2010. 105. Stout NA, Linn HI. Occupational injury prevention research: progress and priorities. Injury Prevention, 2002, 8 Suppl 4:IV9-IV14. doi: http://dx.doi.org/10.1136/ip.8.suppl_4.iv9 PMID:12460949 106. Litchfield MH. Agricultural work related injury and ill-health and the economic cost. Environmental
3. 척수손상의 예방 79
Science and Pollution Research International, 1999, 6:175-182. doi: http://dx.doi.org/10.1007/ BF02987623 PMID:19009396 107. Amorim EC et al. Spine trauma due to diving: main features and short-term neurological outcomes. Spinal Cord, 2011, 49:206-210. doi: http://dx.doi.org/10.1038/sc.2010.79 PMID:20625383 108. Vlok AJ et al. Shallow-water spinal injuries − devastating but preventable. South African Medical Journal, 2010, 100:682-684. PMID:21081000 109. Ye C et al. Pattern of sports- and recreation-related spinal cord injuries in Beijing. Spinal Cord, 2009, 47:857-860. doi: http://dx.doi.org/10.1038/sc.2009.49 PMID:19436265 110. Aito S, D’Andrea M, Werhagen L. Spinal cord injuries due to diving accidents. Spinal Cord, 2005, 43:109-116. doi: http://dx.doi.org/10.1038/sj.sc.3101695 PMID:15558081 111. Barss P et al. Risk factors and prevention for spinal cord injury from diving in swimming pools and natural sites in Quebec, Canada: a 44-year study. Accident; Analysis and Prevention, 2008, 40:787-797. doi: http://dx.doi.org/10.1016/j.aap.2007.09.017 PMID:18329434 112. Korres DS et al. Diving injuries of the cervical spine in amateur divers. The Spine Journal, 2006, 6:44-49. doi: http://dx.doi.org/10.1016/j.spinee.2005.06.013 PMID:16413447 113. WHO. Guidelines for safe recreational water environments. Volume 2: Swimming pools and similar environments. Geneva, World Health Organization, 2006. 114. Cusimano MD, Mascarenhas AM, Manoranjan B. Spinal cord injuries due to diving: a framework and call for prevention. The Journal of Trauma, 2008, 65:1180-1185. doi: http://dx.doi.org/10.1097/ TA.0b013e3181826e09 PMID:19001991 115. FINA. Facilities rules, No. 5: Diving Facilities. Lausanne, Federation Internationale de Natation (International Swimming Federation), 2010 (http://www.fina.org/H2O/index.php?option=com_content& view=article&id=368:fr-5-divingfacilities&catid=88:facilities-rules&Itemid=184, accessed 14 March 2012). 116. Blitvich JD, McElroy GK, Blanksby BA. Risk reduction in diving spinal cord injury: teaching safe diving skills. Journal of Science and Medicine in Sport, 2000, 3:120-131. doi: http://dx.doi.org/ 10.1016/S1440-2440(00)80074-2 PMID:11104304 117. Blitvich JD et al. Retention of safe diving skills. Journal of Science and Medicine in Sport, 2003, 6:155-165. doi: http://dx.doi.org/10.1016/S1440-2440(03)80251-7 PMID:12945622 118. Blitvich JD et al. Long term retention of safe diving skills. Journal of Science and Medicine in
Sport, 2003, 6:348-354. doi: http://dx.doi.org/10.1016/S1440-2440(03)80029-4 PMID:14609152 119. Knutsdottir S et al. Epidemiology of traumatic spinal cord injuries in Iceland from 1975 to 2009.
Spinal Cord, 2012, 50:123-126. doi: http://dx.doi.org/10.1038/sc.2011.105 PMID:21946442 120. Furlan JC et al. Assessment of disability in patients with acute traumatic spinal cord injury: a systematic review of the literature. Journal of Neurotrauma, http://dx.doi.org/10.1089/neu.2009.1148 PMID:20367251 2011, 28:1413-1430. doi:
121. Boran S et al. A 10-year review of sports-related spinal injuries. Irish Journal of Medical Science, 2011, 180:859-863. doi: http://dx.doi.org/10.1007/s11845-011-0730-4 PMID:21792709
80 척수 손상의 국제적 관점
122. NZRU. RugbySmart. Wellington, New Zealand Rugby Union (http://www.nzrugby.co.nz/the_game/ safety/rugbysmart, accessed 9 April 2012). 123. Quarrie KL et al. Effect of nationwide injury prevention programme on serious spinal injuries in New Zealand rugby union: ecological study. British Medical Journal, 2007, 334:1150. doi: http://dx.doi.org/10.1136/bmj.39185.605914.AE PMID:17513314 124. NZRU/ACC. RugbySmart DVD. New Zealand Rugby Union in conjunction with Accident Compensation Corporation, 2012. 125. BokSmart. Winners play smart rugby. Cape Town, The BokSmart National Rugby Safety Program, 2009 (http://www.sarugby.co.za/boksmart/, accessed 9 April 2012). 126. Ackery A et al. An international review of head and spinal cord injuries in alpine skiing and snowboarding. Injury Prevention, 2007, 13:368-375. doi: http://dx.doi.org/10.1136/ip.2007.017285 PMID:18056311 127. Hessler C et al. Spine injuries due to horse riding accidents – an analysis of 30 cases (article in German)Sportverletzung Sportschaden, 2011, 25:93-96. doi: http://dx.doi.org/10.1055/s-0029-1245831 PMID:21611912 128. Bhide VM, Edmonds V, Tator C. Prevention of spinal cord injuries caused by diving: evaluation of the distribution and usage of a diving safety video in high schools. Injury Prevention, 2000, 6:154-156. doi: http://dx.doi.org/10.1136/ip.6.2.154 PMID:10875676 129. WHO/UNICEF. World report on child injury prevention. Geneva, World Health Organization and United Nations Children’s Fund, 2008. 130. Louge P et al. Current management of diving-related spinal cord decompression sickness in 2010 (article in French). La Presse Medicale, 2010, 39:778-785. doi: http://dx.doi.org/10.1016/j.lpm. 2010.02.049 PMID:20466511 131. PAHO. Natural disasters – protecting the public’s health. Washington, DC, Pan American Health Organization, 2000. 132. PAHO. Earthquake in Haiti: PAHO/WHO situation report on health activities post earthquake. Pan American Health Organization, 2010 (http://reliefweb.int/sites/reliefweb.int/files/resources/Full_Report_ 3342.pdf, accessed 5 May 2012).
3. 척수손상의 예방 81
Health care and rehabilitation needs
4. 보건 의료와 재활의 요구
“15살에 나는 급성 림프구성 백혈병과 기타 합병증 진단을 받았다. 다음 해 16번째 생일을 병원에서 보냈고, 신경성 방광과 장 문제와 더불어 흉수 6번 아래로 감각 기능을 상실해 하지마비가 급격히 진행되었다. 하지마비의 원인은 명확하지 않지만, 화학 치료의 부작용일 가능성이 크다는 설명을 들었다. 집에서 치료를 받고, 지속적으로 완전 골수 관해(marrow remission)가 진행된 뒤, 1990년 7월 척수 병동에서 재활 치료를 시작할 정도로 상태가 호전되었다. 척수 병동에서의 삶은 힘들었다. 젊은 여성 환자로서, 나는 또래 여성들의 동료 지원을 받을 수 없었다. 병원을 벗어나고 싶은 강한 바람 속에 나는 더욱 열심히 재활을 하고 휠체어를 타고 사는 법을 익혔다. 3개월 후, 나는 집으로 돌아갈 수 있었고 더욱 자립적인 생활을 시작했다.” (안네, 호주)
“응급실에서 깨어나 한 남성을 바라보았다. 턱수염이 있는 의사는 얼굴을 나에게 가까이 가져왔다. 그는 거의 위협 적인 그리고 단호한 목소리로 이야기했다. ‘다시는 걸을 수 없다는 걸 알고 계시나요?’ 나는 어리둥절하고 믿을 수 없다는 표정으로 그를 바라보았다. 그는 내가 제대로 이해했는지 알고 싶어 했다. 그러나 나는 큰 충격에 빠졌었고, 척수손상에 대해서 놀랄 정도로 아는 것이 전혀 없었다. 나는 의사의 말을 전혀 이해할 수 없었고, 이해한다손 치더라도 당시에 의사가 말했던 손상 소견을 여전히 믿을 수가 없다. 왜냐하면, 나는 그 상황을 전혀 받아들일 수 없었기 때문이다. 나는 그런 식으로 삶의 사형 선고를 듣기에는 너무 어린 나이였다.” (조안나, 뉴질랜드)
“매일 운동하는 생활을 모든 사람에게 장려하는 시대인데, 척수장애인이라고 다르게 살 이유가 있을까? 나는 날마다 열심히 운동을 한다. 운동을 통해 나에게 영향을 줄 수 있는 많은 잠재적인 합병증도 막을 수 있고, 오늘 그리고 내일을 위해 몸과 마음을 단련할 수도 있다. 아내와 아이들과 함께 턱으로 조정하는 휠체어를 타고 목장이나 해변에 나가는 일이 내가 가장 즐기는 운동이다.” (브래드, 호주)
“나는 큰 안정을 주는 치료를 매일 받았다. 나는 간호사들, 특히 방광과 장 관리법을 알려 준 분을 사랑한다(지금 까지도 유치 도뇨관을 하고 있다는 사실을 기억하면). 나는 매번 사람들이 침대 주위로 다가오거나 침대를 만질 때마다 발생하는 전기 충격(electric shocks)을 줄이기 위해 높은 침대 위에 누워 있어야만 했다. 점차 나는 스스로 목욕하기, 트랜스퍼(transfer), 휠체어 타는 기술을 배워 나갔다. 척수 병동 다른 환자들과의 어색함은 바로 서기 힘든 사람이 억지로 일어나느라 바지가 그만 발목까지 내려왔을 때 금방 사라져 버렸다. 이 일로 우리는 함께 미친 듯이 웃을 수 있었다.” (안젤라, 우간다)
“2년 전에 병원에서 퇴원한 후 방광 결석에 걸렸고, 이후 수술을 위해 병원에 입원했다. 자세 변화를 늦게 할 때마다 엉덩이에는 항상 욕창이 발생했다. 지금은 재활 치료 선생님의 지도 아래 욕창과 요로 감염 방지에 각별한 관심을 기울이고 있다. 최선을 다해 좋은 상태를 유지하기 위해 노력하겠지만, 장담은 할 수 없다.” (첸, 중국)
4 보건 의료와 재활의 요구 원인이 외상성이든 비외상성이든 척수손상은 삶을 크게 변화시키고 건강 면에서도 주의를 요한다. 하지만 그것이 반드시 개인의 훌륭한 삶이나 삶의 성취 가능성을 저해하는 것은 아니다. 척수손상의 사회적 영향은 손상의 정도와 수준보다도 사회적 환경적 요인들 특히, 적절하고 접근 가능한 보건 의료를 얼마나 이용할 수 있느냐에 달려 있다. 올바른 관리를 받는다면 척수손상은 치명적인 상황도 아니고, 교육을 받거나, 직업을 구하거나, 가정을 꾸리거나, 성공적이고 생산적인 삶을 사는 데 있어 이를 불가능하게 만드는 요소도 아니다. 이후의 장에서 사회적 장벽과 이를 극복하기 위한 방안을 살펴보기로 하고, 이 장에서는 건강 관리와 보조 기기 기술을 포함한 재활에 대해서 중점적으로 살펴 보도록 하겠다. 유엔 장애인 권리 협약은 장애인의 인권과 관련해 달성할 수 있는 높은 수준의 건강 기준을 25조에, 재활 서비스(보조 기기 기술 포함) 제공을 26조에, 그리고 개인의 이동성(보조 기기 기술 포함)을 20조 에서 밝히고 있다(1). 이 장은 척수손상이 개인의 건강에 미치는 영향과 척수장애인이 경험할 수 있는 합병증, 그리고 이를 건강 관리의 세 가지 주요 단계별로 관리하는 방법을 분석해서 설명할 것이다. • 입원 전 & 급성기 치료 – 신속한 대응으로 생명을 살리고 환자를 안정화시키기 위해 필요한 부분이다. 올바른 초기 대응이 없다면 척수손상으로 인해 생명을 위협받는 상태가 되거나 미래의 신체 기능과 자립 생활의 가능성을 저해할 수 있다. • 급성기 이후 의료적 관리 및 재활 서비스 – 기능 회복을 극대화시켜서 개인이 최대한 자립 생활을 할 수 있도록 이끌고, 교육이나 직장으로 돌아갈 수 있도록 하는 부분이다. 이 시기에는 적절한 보조 기기가 매우 중요하다. 재활과 보조 기기에 대한 접근성이 떨어질수록 척수장애인의 사회 참여 가능성도 낮아지게 된다. • 건강 관리의 유지 – 척수장애인이 요로 감염, 욕창, 과사용 손상(overuse injuries)과 같은 척수손상 합병증을 예방·극복하며, 오랫동안 건강을 유지하고 삶을 영위하기 위한 부분이다. 기본적인 보건 의료에 대한 접근이 불 가능하다면 척수장애인이 일찍 사망할 가능성도 크다.
지면의 제약으로 이 장에서 척수장애인에게 필요한 모든 건강 관리 내용을 소개할 수는 없다. 이 장의 목적은 정책 입안자와 서비스 매니저에게 척수손상의 잠재적인 합병증과 건강 관리의 세 가지 단계에 걸쳐 필요한 주요 서비스의 내용을 알려주기 위한 것이다.
4. 보건 의료와 재활의 요구 85
척수손상이 건강에 미치는 영향
외상성/비외상성 척수손상에 의한 신경 손상은 두뇌와 손상 부위 아랫부분의 감각과 운동 정보 이동을 방해하게 된다. 척수손상이 신체 기능에 미치는 영향은 손상 부위와 정도, 이용할 수 있는 보건 의료 시스템에 달려 있다. 척수손상의 신경학적 분류를 위한 국제 기준(ISNCSCI)은 신경 기능의 체계적인 감각, 운동 검사를 기반으로 손상의 정도(손상의 형태와 부위를 포함)를 설명하기 위한 보건 의료 세팅 에서 종종 사용된다(2). 척수손상은 손상 정도(severity) (2)에 따라 다음의 두 가지 형태로 나눌 수 있다. • 완전 손상 – 완전 손상을 겪는 사람들은 척수손상을 당한 부위 아래, 특히 천수 4-5번 아래로 감각과 운동 기능이 없다. • 불완전 손상 – 불완전 손상을 겪는 사람들은 가장 낮은 천수 4-5번 부위를 포함한 신경학적 손상 부위 아래로 약간의 기능(예: 감각과 근육)이 남아 있다. 그리고 불완전 척수손상은 남아 있는 기능에 영향을 미칠 수 있는 전척수 증후군, 중심척수 증후군, 후척수 증후군, 측척수 증후군(Brown-Sequard syndrome)으로 나눌 수 있다.
척수손상의 피해를 받는 부위는 마비에 의해 영향을 받는 신체의 부위가 어딘지에 따라 결정된다. 예: 근육 기능, 감각 손실 (2) • 하지마비 – 척수의 말단 구근부인 척수 원추(conus medullaris)나 말총(요수 1-2번에서 뻗어 나가는 신경근의 다발)을 포함한 흉수(2-12번), 요수(1-5번), 천수(1-5번) 부위에 손상이 가해진 경우를 일컫는다. 하지마비는 두 팔과는 상관없이 몸통과 하체의 운동 능력이 다양한 범위에서 손실된 경우이다. 예를 들면, 흉수 2번과 8번 사이에 완전 손상을 당한 사람은 복부 근육 조절 능력이 떨어져 몸통 움직임 조절이 어렵게 될 것이고, 두 다리의 기능을 완전히 상실하게 된다. 흉수 9번과 12번 사이에 낮은 수준의 완전 손상을 당한 사람은 몸통과 복부 조절 능력은 우수하지만 두 다리의 기능을 완전히 상실하게 된다. 반면 요수와 천수 손상을 당한 사람은 어느 정도는 두 다리를 사용할 수 있다. 1장의 (그림 1.1)은 해당 척수의 위치를 보여 준다. • 사지마비 – 경수 부위에 손상이 온 경우를 일컫는다. 예를 들면, 경수 1번과 흉수 1번 사이에서 발생하는 경우이다. 손상의 정도와 부위에 따라서 사지마비는 목, 몸통, 팔, 다리의 다양한 정도의 기능 손실로 연결된다. 예를 들어, 경수 1-3번 완전 손상을 당한 사람은 인공호흡기를 사용해야 하며 경수 5번 완전 손상을 당한 사람은 어깨와 팔의 움직임을 조절할 수 있으나 팔목과 손의 움직임은 조절할 수 없다. 경수 6번 완전 손상을 당한 사람은 팔목을 펼 수는 있지만, 손과 손가락의 기능을 잃어버리게 된다. 그리고 경수 7-8번 완전 손상을 당한 사람은 팔은 움직일 수 있으나 손과 손가락을 움직이는 기능에 문제가 발생하게 될 것이다.
운동-신경 기능 손실 이외에도, 척수손상은 장, 방광, 성 기능의 복합적인 손상으로 이어지는 신체의 자율 신경 기능에 영향을 미친다(3). 척수장애인은 또한 광범위한 활동의 제한과 움직임(예: 체위변경, 트랜스퍼, 보행), 자기 관리 활동(예: 목욕, 옷 입기, 용변 처리, 식사), 가사 활동(예: 청소, 요리, 타인 돌보기), 교육, 고용, 사회적 관계 유지, 레저 활동 참여와 같은 분야에서 제약을 경험한다(4).
▶ 잠재적 합병증 86 척수 손상의 국제적 관점
척수장애인은 사망과 질환의 주요 원인이 될 수 있는 다양한 이차 합병증의 위험에 놓여 있다. 이런 합병증은 손상 이후 입원 전과 급성기 치료 단계에서 주로 발생하지만, 기타 합병증은 언제나 발생 할 수 있다. 그러나 적절한 관리를 통해서 이러한 많은 이차 합병증을 예방할 수 있다는 근거들이 있다.
순환 기관 자율 신경 이상 반사증 (Autonomic dysreflexia): 혈압이 급격히 상승해 발생하는 현상으로 흉수 6번 부위 위로 손상을 입은 척수장애인에게 일반적으로 나타난다(5). 극심한 두통, 심한 발한, 피부 홍조나 홍반, 시야 흐려짐, 체모가 ‘곤두서는’ 현상, 심장 부정맥 등의 증상과 징후를 동반한다(5-7). 유해 자극을 포함한 원인으로 발생할 수 있고, 일반적으로 방광이나 장이 팽창되거나 막히는 경우 발생 한다. 자율 신경 이상 반사증은 의료적 응급 상황으로, 치료하지 않으면 뇌졸중, 발작, 죽음에 이르게 될 수도 있다. 따라서 모든 사지마비 장애인 혹은 중증 하지마비 장애인과 그들의 가족, 간병인들이 반드시 예방과 대처 방법에 대한 교육을 받아야 한다(6).
심부정맥 혈전증(Deep vein thrombosis: DVT): 척수장애인은 이 질환에 걸릴 위험성이 매우 높다. 특히, 신경학적으로 혈관을 조절하는 일반적인 상태의 변화와 몸을 움직이지 못해 울혈이 발생하는 손상의 급성기/급성기 이후 단계에서 위험하다(8). 연령, 비만, 하지 골절 상태, 임신, 이전의 심부정맥 혈전증 병력 등이 추가적인 위험 요인에 포함된다. 통증, 종창, 압통, 피부 변색, 손상된 팔다리의 체온 상승 등의 증상과 징후가 동반된다(8). 이 증상은 폐색전증으로 이어질 수 있고, 시기를 놓치면 사망에까지 이를 수도 있기 때문에 항응고제를 사용한 신속한 치료가 요구된다(8). 항응고제 복용, 압박 스타킹 착용과 같은 예방 조치들이 정말로 중요하며, 이 예방 조치는 일반 병원에서도 치료 대책의 한 부분이 되어야 한다(8, 9).
저혈압(Hypotension): 기립성 저혈압은 사람이 누워 있다가 일어서는 경우에 혈압이 급격히 떨어지는 현상이다. 이 증상은 사지마비, 하지마비 척수장애인 모두에게 영향을 미치며, 어떤 증상은 이후에도 지속적으로 발생하기는 하지만, 주로 손상의 급성기 단계에서 일반적으로 나타난다(10, 11). 피로, 가벼운 두통, 어지러움, 시야 흐려짐, 근육 약화, 그리고 일시적인 의식 상실 등이 전형적인 증상이다 (12). 세심한 모니터링, 지속적인 체위 변경, 도움이 될 경우, 약품이나 소금정제(salt tablets) 제공과 같은 관리가 필요하다(13).
비뇨 생식 기관 요로 감염(Urinary tract infections (UTIs): 요로 감염은 척수장애인에게 일반적인 질환이며, 고소득 국가에서는 재입원 요인으로, 개발도상국에서는 조기 사망의 주원인으로 간주되고 있다(6, 14-16). 척수손상은 방광 기능에 영향을 주며, 관리 방법으로 많은 척수장애인들이 카테터를 사용한다(아래
4. 보건 의료와 재활의 요구 87
참조). 다만 방광 관리 방법과 사용하는 카테터의 종류에 따라 요로 감염 위험성을 높일 수 있다는 몇몇 근거가 제시되고 있다(14, 16). 요로 감염의 위험 증가와 관련된 다른 요인으로는 음용수 섭취, 개인위생, 임신, 사회 지원 시스템, 보건 의료 서비스에 대한 접근 등을 들 수 있다(17). 요실금, 배뇨 중 통증, 냄새가 나는 탁한 소변, 발열, 무기력증, 졸음 등이 요로 감염의 눈에 띄는 증상과 징후이며, 또한 경직 심화, 신경성 두통, 자율 신경 이상 반사증과 같은 척수손상 관련 합병증이 심해진다(6, 15, 16). 실험실 검사(소변 배양 분석)를 통해 요로 감염 여부를 판단하고 최선의 치료 방법을 결정한다(6, 15, 16). 요로 감염 예방은 방광 관리의 주된 목적이다. 적절한 카테터 사용 방법과 치료에 대한 교육이 중요하다. 다른 관리 방법으로는 주기적 검사, 적절한 음용수 섭취, 개인위생의 바른 기준, 방광 관리와 관련된 의료 장비의 적절한 관리 등을 들 수 있다(6, 15).
신경 근육 골격계 기관 경직과 경련(Spasticity/spasms): 경직은 척수장애인에게 일반적인 이차 합병증 증상이다(13, 18). 이 증상으로 인해 무의식적으로 몸이 움직이게 되고, 운동 범위를 제한해 기능을 저해하는 관절 구축으로 이어지기도 한다. 관리 방법으로는 물리 치료사에게 치료를 받거나 스스로 운동하기 혹은 위치 잡기, 부목 고정, 깁스 치료를 통해 진행하는 수동 운동이나 스트레칭이 있다. 이 외에도 활발한 움직임과 운동 효과를 얻을 수 있도록 근육과 신경에 자극을 주는 전기, 기계, 온열 기기 치료를 할 수도 있고, 항경련 약물을 처방받을 수도 있다(18-20).
골다공증(Sublesional osteoporosis): 척수손상 이후에 급격히 골 질량 손실이 발생해 손상 부위 아래로 골다공증에 걸릴 위험성이 높아진다(21). 식생활로 인한 칼슘 섭취 부족, 비타민 D 부족, 노화, 활동량 저하는 골 밀도 변화의 원인이 될 수 있다(21). 골다공증이 있을 경우, 척수장애인은 골절의 위험성이 매우 높으며, 트랜스퍼(transfer) 같은 일상생활 동작 과정에서 쉽게 부상을 당할 수도 있다. 척수손상에 이은 급속한 골 질량 손실을 고려했을 때, 초기의 뼈 건강 관리는 특히 중요 하다. 관리 방법으로는 비타민 D를 비롯해 칼슘과 함께 다이놀정(biophosphonates: 골 질량 손실을 예방, 치료하는 약품) 복용, 체중을 지지하는 활동 하기, 전기 자극 등이 있다. 그러나 이런 방법의 효능과 관련된 증거는 제한적이다(21-25).
이소성 골화증(Heterotopic ossification): 이소성 골화증은 척수손상 부위 아래의 관절 주변으로 연약한 조직에 비정상적으로 뼈가 형성되는 상태이다. 일반적으로 영향을 받는 관절 부위는 엉덩이, 무릎, 경추 손상 부위, 어깨, 팔목 등이다(13). 이소성 골화증은 관절의 운동 범위에 제약을 가해 척수장애인의 기능적인 측면에 상당한 영향을 끼치는 만큼 뼈 스캔이나 X-ray를 이용한 조기 발견이 중요하다. 이소성 골화증은 원인이 명확하지 않아서 대처 방법도 쉽지가 않다. 근거가 아주 제한적
88 척수 손상의 국제적 관점
이기는 하지만, 항염증제를 조기에 복용하는 것이 이소성 골화증 발생 위험을 낮추는 데 효과적이 라고 알려지고 있다. 약 복용이나 방사선 치료와 같은 치료법은 이소성 골화증의 진행을 막는 데 도움이 될 수도 있으며, 영향을 받은 관절의 운동 범위 향상을 위해서는 수술이 좋은 방법일 수도 있다(26).
호흡 기관 호흡 기능: 호흡과 관련된 근육이 마비되면서 척수손상 이후에 폐활량, 편한 호흡 능력, 기침하는 능력, 입안 분비물 제거 능력 등이 종종 약해진다(27, 28). 상위 손상 레벨의 사지마비 척수장애인인 경우에 특히 더 취약하다. 경수 3번 위로 손상을 당한 척수장애인은 지속적으로 기계적 호흡이 필요 할 수도 있고, 적절한 호흡을 유지하기 위해 횡격막에 심박 조율기(pacemaker)를 삽입해야 할 수도 있다(29-31). 척수손상인의 상태에 따라 급성기 치료 단계에 적절한 기도 확보와 분비물 제거, 호흡을 위해 기관 절개술을 하기도 한다(13).
호흡기 합병증: 폐렴, 무기폐(collapsed lung), 흡입과 호흡 능력 상실 등은 척수장애인의 사망과 질환의 주요한 원인이다. 그러나 관리를 잘 하게 되면 이런 합병증을 예방할 수 있다. 합병증 관련 대책으로는 매년 인플루엔자 백신 접종, 5년 주기로 폐렴구균 백신 접종, 항생제 처방을 통한 상기도 (upper respiratory tract) 감염의 신속한 치료, 상위 손상 레벨의 척수장애인의 경우 초기에 보조 기침법 시행 등이 있다. 또한 호흡기와 폐 기능 정기 측정과 검사, 장단기 기계적 인공호흡 기기 사용, 호흡 근육 훈련, 유산소 운동 등의 장기 관리 대책도 필요하다. 특히 호흡기에 의존하고 있는 척수장애인을 위해 대처 기술 개발을 위한 심리 지원, 척수장애인 당사자와 가족에 대한 훈련 등이 요구된다(29). 상황에 따라서는 심박 조절기를 수술을 통해 삽입할 경우, 주요 호흡 신경이나 근육(예: 횡격막) 자극에 도움이 되고 호흡기 없이 호흡할 수도 있다(29, 32).
통증 대부분의 척수장애인들은 자신들의 삶의 질에 큰 영향을 미칠 수 있는 만성적인 통증을 경험한다 (13, 33-35). 연구자와 임상의의 척수손상 이후 발생하는 통증 분류에 도움을 주기 위해 최근에 국제
척수손상 통증 분류(International Spinal Cord Injury Pain Classification)가 개발되었다(36, 37). 상당한 비율의 척수장애인들이 살이 타는 듯한 통증, 날카로운 물체에 찔리는 듯한 통증, 쑤시는 통증, 전기에 감전된 것 같은 신경성 통증을 척수손상 이후에 경험한다(13, 33, 38). 척수장애인은 또한 과도하게 근육을 사용한 결과로 근골격계 통증을 경험할 수도 있다. 예를 들어, 지속적으로 수동 휠체어를 밀어서 생기는 어깨 통증, 근육 경련, 기계적 불안정, 잘못된 자세로 인해 발생하는 통증 등이 이에 해당한다(39).
4. 보건 의료와 재활의 요구 89
통증의 경험은 개인마다 다르기 때문에, 생물의학(biomedical)적, 문화적, 심리·사회적 요인들을 고려 해야 한다(35, 40-42). 따라서 통증 관리를 위해서는 여러 분야의 학문적·제도적 접근이 필요하다. 즉, 약물 요법, 운동, 마사지, 침, 심리 치료, 명상과 휴식, 보조 기기 기술 지원(정의에 대해 박스 4.1 참조), 자세 보조 용구의 검토와 개조, 위치 이동과 같은 활동 수행 시 대안적인 방법 교육 등의 조치가 함께 고려되어야 할 것이다(13, 33, 34, 38).
피부 욕창: 척수장애인은 감각과 운동 기능 손상으로 인해 욕창 발생의 위험성이 매우 높다. 기타 행동적· 사회인구통계학적·의료적 요인 – 흡연, 영양 결핍(영양 불량, 저체중, 빈혈), 감염, 땀으로 인한 습기 혹은 요실금, 당뇨와 폐 질환 같은 합병 질환 - 이 욕창의 위험을 증가시킨다(46-48). 박스 4.1. 정의 보조 기기(Assistive technology): 보조 기기는 “장애인의 기능적 역량을 증대, 유지, 향상하기 위해 사용하는 상거래를 통해 구매하거나, 개조하고, 맞춤형으로 제작된 어떤 장비나 제품을 지칭한다.” (43). 환경 개조(Environmental modifications): 물리적 환경의 접근성은 장애인의 기능적 수행과 어떤 형태의 보조 기기를 사용하는 능력에 영향을 미친다. 개인적 수준(화장실을 쉽게 이용할 수 있도록 난간 손잡이를 설치하거나 휠체어 크기에 맞게 문의 폭을 개조) 혹은 사회적 수준(공공건물에 경사로와 엘리베이터 설치)의 초점을 맞춘 환경 개조는 개인이 가정, 학교, 직장 환경에서 장애물을 극복하는 데 도움을 줄 수 있다. 유니버설 디자인과 보편적 기술(Universal design and mainstream technology): 장애인 권리 협약에서는 유니버설 디자인을 “개조 또는 특별한 디자인을 할 필요 없이 최대한 가능한 범위 내에서 모든 사람이 사용할 수 있는 제품, 환경, 프로그램 및 서비스를 디자인하는 것”이라고 정의하고 있다(1). 이 섹션에서는 척수장애인을 위해 특수하게 고 안된 제품에 초점을 맞추고 있지만, 시장에서 이용할 수 있는 유니버설 디자인의 특징을 가진 많은 기술이 또한 유용 할 수 있다는(예: 휴대폰, 컴퓨터, 주방 기구 등) 사실을 인식하는 것이 중요하다. 자세한 내용은 7장 참조. 적절한 기술(Appropriate technology): 이 용어는 이용자가 자신의 환경 안에서 요구하는 적절한 기술을 지칭하는 데 사용한다(44, 45). 이 용어는 또한 이용자가 수용할 수 있는 즉, 알맞게 조절할 수 있고 적절한 자세 보조를 할 수 있으며 안전하고 오래 사용할 수 있고 국가 안에서 이용 가능하며 적정한 비용으로 획득 및 유지할 수 있는 기술을 포함한다(45).
욕창은 언제나 발생할 수 있으며 개인의 건강, 기능, 삶의 질(46)에 상당한 영향을 미칠 뿐만 아니라 입원율의 증가와 장기 입원으로 인해 보건 의료 체계에도 상당한 부담을 지우게 된다(49). 욕창 발생 예방은 척수장애인의 건강 관리에 있어 가장 중요한 부분이고 치료보다도 훨씬 경제적이다 (47). 따라서 척수장애인 당사자와 가족은 평생 건강 관리 측면에서 욕창 관리법에 대해 교육과 훈련을 꼭 받아야 한다(47, 50). 예방에는 주기적 피부 확인, 압력 완화 방법, 적절한 장과 방광 관리, 충분한 영양 공급 같은 간단한 조치들도 포함된다(46-48, 51). 치료 조치에는 적절한 상처 관리, 압력 완화 방법, 감염에 대한 항생제 복용, 수술 등의 방법이 포함된다(46-48, 50).
90 척수 손상의 국제적 관점
보건 의료적 요구
▶ 입원 전 관리 및 급성기 치료 외상성 척수손상 발생 최초 24시간 이내 그리고 이후 며칠 동안 진행되는 치료는 매우 중요하며, 부상당한 환자의 향후 경과에 중대한 영향을 미친다(51). 입원 전 관리에는 바이탈 사인 측정과 의식 수준 확인을 포함한 신속한 진단, 생명 기능(vital functions) 안정화, 장기간 척추 안정성이 확보될 때까지 신경학적 기능 유지를 위해 척수 고정, 지혈, 체온과 통증 관리 등을 포함한 부상 치료 개시, 그리고 신속하고 안전하게 보건 의료 시스템으로의 접근을 확보하는 내용 등이 요구된다(48, 51-55). 척수손상 환자는 손상 후 두 시간 이내에 급성기 치료를 할 수 있는 시설에 도착하는 것이 이상적 이다(54). 급성기 단계에서는 모든 심각한 손상에 적용하는 처치(예: 수액 주입, 방광 배뇨, 바이탈 사인 모니터링)를 비롯해 생존율을 극대화하기 위해 생명을 위협하는 부상의 우선 치료, 손상을 최 소화할 수 있도록 잠재적으로 사망에 이르거나 장애를 남기게 될지도 모르는 부상(disabling injury)의 치료, 통증과 심리적 고통을 최소화하는 조치들로 이루어진다. (54). 척수손상과 기타 동시 다발 증상들(예: 외상성 두뇌 손상, 팔다리 골절, 가슴과 복부 부상, 상처와 관통 부상 등)의 정확한 진단은 매우 중요하며, 이를 통해 적절한 의학적 치료와 재활을 제공할 수 있다. 환자가 병원에 도착하자마자 즉각적으로 사정(assessment)이 이루어져야 하며 다음이 포함된다. • 의료 기록 확인. • 증상과 징후 파악(예를 들어, 근력 감소, 감각 및 운동 기능 장애, 장과 방광 기능 저하, 해부학적 기형, 국부 적인 압통). • 신경학적(운동과 감각) 검사 • 방사선 촬영, 즉 X-ray, 컴퓨터 단층 촬영, 자기공명이미지(MRI) 검사 • 혈액과 미생물의 실험실 검사 등
척추가 불안정한 상태이고 척수에 지속적으로 압력이 가해지고 있는 경우, 보존적 또는 수술적인 개입이 요구된다. 외상성과 비외상성 척수손상의 있어서, 보존적인 치료와 수술은 장점도 있지만, 합병증도 불러일으킬 수 있다. 손상 부위, 골절 형태, 불안정성의 정도, 신경 압박 여부, 다른 부상 부위에 미칠 영향, 수술 시기, 전문적 지식과 같은 이용 가능한 자원, 이로운 점과 위험 요인 등을 포함한 가장 적절한 관리 방법을 결정하기 위해 많은 요인들을 고려해야 한다. 모든 경우에, 척수 장애인이 보존적인 방식과 수술적 관리법 사이에서 선택할 수 있도록 사전에 정보를 제공해야 한다. 보존적인 관리는 척추를 고정하거나 침상 안정, 척추 견인 장비 등을 통해 탈구를 ‘정복(reduce)’ 하기 위한 조치들과 척추를 고정하기 위해 보조기(orthoses)(예: 할로베스트)를 6주 이상 착용하는 조치 등이 포함된다. 수술적 방법은 (i)신경 구조 압박에 원인이 되는 뼛조각을 제거하여 탈구를
4. 보건 의료와 재활의 요구 91
‘정복(reduction)’함으로써 척추에 가해지는 압력을 낮추기 위해 사용할 수 있고, (ii)하드웨어 (hardware)를 삽입하고 뼈 이식을 통해 척추를 안정화시킬 수 있다. 최근에 북미에서 경수 2번과 흉수 1번 사이에 손상을 당한 313명의 환자를 대상으로 진행한 전향적, 멀티 센터 연구에서 초기 수술적 감압이(예: 척수손상 후 최초 24시간 이내) 향후 신경학적 기능 회복에 도움이 될 수 있다는 결과가 밝혀졌다(56). 보존적, 수술적 관리 방법 모두 장점과 합병증의 잠재적 요소를 가지고 있으며, 어느 방식이 신경 기능 회복에 도움이 되는지, 합병증 발생이 더 적은지, 초기 운동 기능과 재활을 용이하게 하는지, 비용 대비 효과적인지에 대해서는 합의된 내용 이나 연구가 아직까지는 제한적이다(13, 51, 57-61). 비외상성 척수손상에 대한 급성기 치료는 손상 원인에 따라 몇몇 차이가 있기는 하지만 대체적으로 외상성 척수손상의 치료법과 비슷하다. 수술 요법은 척주관에 심각한 영향을 주는 퇴행성 조건인 경우 (62, 63), 척추 종양 치료를 위해 종종 진행되는 방사선 요법과 화학 요법의 경우 (64), 경색증을 제외한 척추 혈관 질환 (65, 66)인 경우 등에서 고려될 수 있다. 감염성 원인에 의한 비외상성 척수 손상 또한 수술적 치료가 필요할 수 있지만, 일반적으로 항생제, 항바이러스제, 항기생충제와 같은 약물을 이용한 즉각적인 치료가 필요하다. (67).
▶ 급성기 이후 의료 치료와 재활 적절한 의료적 치료와 재활은 척수손상과 관련된 합병증을 예방할 수 있고 당사자의 삶을 만족 스럽고 생산적으로 만드는 데 도움을 줄 수 있다. “개인이 주변 환경과 상호 작용을 통해 최적의 기능을 회복하거나 발휘할 수 있도록 지원을 하는 일련의 조치 ” (44)로 정의되는 재활은 척수 장애인의 급성기 단계에서 시작되어야 하고, 기능 회복을 위해 지속적으로 이용할 수 있어야 하며, 병원에서부터 가정, 지역 사회에 이르기까지 다양한 환경에서 이용할 수 있어야 한다. 기능 회복은 척수장애인에게 최고의 우선순위이다. 연구에 따르면, 장과 방광 기능 회복이 사지마비, 하지마비 장애인에게 모두 중요하지만, 사지마비 장애인의 경우 팔(상지) 기능 회복이 최고의 우선 순위이며, 하지마비 장애인의 경우 성 기능 회복이 가장 우선순위였다(68-71). 다음의 섹션에서는 신체와 정신적 기능 회복에 대해서 알아보겠다.
방광 기능 관리 일반적인 방광 기능의 손실은 척수손상 이후에 발생하는 가장 심각한 결과 중 하나이다. 잘못된 방광 관리는 요로 감염증, 요 정체(urinary retention), 요실금, 신장 및 요로 결석, 요 역류와 같은 이차 합병증으로 이어질 수 있다(15). 장기간에 걸쳐 이런 문제 중 어떤 문제라도 발생할 경우, 신부전증 같은 치명적인 상태로 진행될 수도 있다(13, 16). 척수장애인의 방광 배뇨에 도움이 될 수 있는 방법은 다음과 같다(15, 16).
92 척수 손상의 국제적 관점
• 간헐적(Intermittent) 도뇨법: 소변 배출을 위해 카테터를 방광에 삽입하고 배출이 끝나면 즉시 카테터를 제거한다. 이 방법은 하루 중에 정기적으로 시행해야 하며, ‘살균’(예: 일회용)이나 ‘청결’(예: 카테터 재사용을 위한 살균 처리와 저장소)을 유지할 수 있는 시스템을 사용해야 한다. • 유치(In-dwelling) 도뇨법: 카테터를 방광에 삽입한 후 단기간 혹은 장기간 그대로 둔다. 유치 도뇨법은 주로 두 가지 형태로, 하나는 요로(urethral) 카테터와 또 다른 하나는 치골 위 부위를 외과적으로 작게 절개해 카테터를 삽입하는 치골 상부(suprapubic) 카테터가 있다. • 기타 방법: 배뇨를 위해 손으로 하는 방법과 외부에 콘돔 타입의 카테터를 소변 백에 연결한 콘돔형 카테터 방법(남성용), 약물 복용, 전기 자극, 요로 전환술, 카테터 삽입을 위해 복부를 절개하는 시술 등이 있다.
개개인의 성별, 방광 기능, 운동성, 앉은 자세의 균형, 손의 기능, 라이프스타일과 같은 요소를 고려한 맞춤형 방광 관리 프로그램이 필요하다. 또한 각각의 방광 관리법과 관련된 장점과 단점, 개인의 상황에 맞춘 적절한 방법과 이용 가능성 등도 추가적으로 고려해야 할 요소이다. 손으로 하는 관리법은 일반적으로 권장되지 않으며, 장기간에 걸쳐 방광 배뇨를 위해 이 방법을 유일한 수단으로 사용하는 것 역시 최선이라 할 수 없다(16, 72). 근거 자료에 따르면, 간헐적 도뇨법이 특히 유치 도뇨법과 비교했을 때 일반적으로 합병증 발생이 적기 때문에 선호하는 방법으로 알려져 있다(16). 미국에서 실시한 무작위 대조 시험 결과는 짧은 시간의 교육(경륜 있는 간호사의 카테터 방법 관찰 지도, 방광 관리 향상과 적절한 병원 방문 시기에 대한 의료적 카운슬링, 요로 감염증 관리에 대한 정보 서류 제공, 교육 이후에 발생한 문의 사항에 대한 이후의 전화 상담을 포함한) 프로그램이 증상 발생 보고, 항생제 처방 횟수, 요로 감염증 발생 횟수 등을 낮추는 것으로 나타났다(14). 또한 연구에 따르면, 청결 간헐 도뇨법(CIC)이 가용 자원이 많지 않은 환경에서 안전하고, 효율적이며, 비용 대비 효과적인 방법으로 밝혀졌다(72-74).
장 기능 관리 신경인성 장은 척수손상 이후 가장 일반적인 상태이며, 결장 운동 악화, 배설물의 길어진 장 통과 시간, 만성 변비, 복부 팽만, 변실금을 포함한 상당수의 소화기계 문제와 관련되어 있다(75-77). 신 경인성 장을 경험한 척수장애인은 종종 사회 복귀와 활동에 있어 개인 기능에 중요한 영향을 미칠 수 있는 장 실금증에 대해 두려움을 가지고 있다(75, 76). 적절한 장 기능 관리는 자원이 제한적인 환경에서 특히 어렵다. 예를 들어, 2005년 지진 발생 이후 파키스탄에서 진행된 연구에 따르면, 적절한 보건 의료 시스템, 의료 장비, 화장실의 접근이 제한된 경우 지속적인 개인의 적절한 장 관리 능력에 영향을 미친다는 사실이 알려졌다(78). 방광 관리와 더불어 장 관리 프로그램도 개인별로 마련되어야 한다. 포괄적인 평가, 맞춤형 장 관리 프로그램 개발, 모니터링, 교육은 이 과정에 중요한 측면이다(76). 효과적인 장 프로그램을 수립하 기 위해 다음의 조치를 포함시켜야 한다. • 충분하고 적절한 영양 공급 및 음료 섭취. • 필요한 경우 식품 보조제와 구강 약제 사용.
4. 보건 의료와 재활의 요구 93
• 배변과 배뇨를 돕기 위해 물리적 기법(예: 수동 배뇨, 직장 및 항문관에 손가락 자극, 자세 잡기)과 좌약, 관장약, 완하제와 같은 자극성 하제 등 적절한 방법 선택. • 장 배출을 위한 인공 항문 생성 수술. • 합병증 관리 전략 (75, 77, 79-81).
성 기능과 생식 건강 관리 척수손상과 이로 인한 손상은 흥분, 반응, 성적 표현, 임신과 같은 성 기능의 생리적·실질적·심리적 측면에 영향을 미친다. 남성과 여성 모두 감각의 손실 혹은 저하, 오르가슴 도달의 어려움, 움직 이거나 체위 변경의 어려움, 자존감 및 자신감 하락을 경험할 수 있다(82-84). 게다가, 남성은 임신과 관련이 있는 발기와 사정 능력의 전부 혹은 일부 손상을 경험할 수 있다(85). 여성의 경우에는, 보통 몇 개월 이내 정상으로 돌아오기 하지만, 손상 이후 생리 불순을 경험할 수 있다(86). 성 기능의 변화는 척수장애인의 삶의 질에 큰 영향을 미친다(69, 82). 이러한 성적인 측면의 심리적, 사회적 내용은 6장에서 논의하도록 하겠다. 성생활 회복은 척수장애인에게 중요한 우선순위이다. 척수손상이 성 기능에 미치는 영향을 알아보기 위해 온라인으로 진행된 연구에서 사람들이 성생활을 원하는 주된 이유로 성적 욕구 만족, 친밀감 형성, 자존감 회복, 파트너 유지 등을 꼽았다(69). 성과 관련된 내용은 의료 전문가가 이 주제를 다루는 데 불편함을 느끼거나 필요한 지식과 기술이 부족해 재활의 과정에서 종종 간과되곤 한다(82). 성 기능 관리를 위해서는 적절한 시간에 당사자 및 파트너와 함께 성실한 대화를 나누는 것이 필요 하다. 의료적 치료와 재활 방법은 당사자와 관련 있는, 필요한 내용으로 진행하고 나이, 성별, 신체적, 사회심리적, 문화적 요소를 고려해야 한다(82, 83). 이러한 조치에는 (i) 성행위 준비와 체위, 피임, 감염성 성병 예방, 요실금이나 자율 신경 이상 반사증에 대한 관리 전략 등에 대해 교육하고 정보를 제공하거나, (ii) 흥분과 체위 향상을 위한 보조 기구 제공, 남성의 발기 부전 치료(예: 진동 자극, 구강약 복용, 음경 주입법, 진공 발기 장치, 그리고 마지막 수단으로 음경 보형물 삽입술과 같은 외과적 선택) 수단 제공, 그리고 (iii) 필요한 경우에 임신 지원 등의 방법이 있다(13, 82, 83). 여성 척수장애인이 임신을 한 경우에는 척수손상 관련 약품 복용이 잠재적으로 태아에 미치는 영향과 임신과 관련된 합병증(요로 감염증, 욕창, 심부정맥 혈전증, 호흡기 질환 등) 증가의 위험, 체중 증가로 인한 기능 변화(예: 임신 말기의 트랜스퍼의 어려움), 자율 신경 이상 반사증을 포함한 출산 과정의 합병증에 대해 고려해야 한다(86).
기능적 어려움에 대한 관리 척수손상은 활동의 많은 제약을 가져온다. 따라서 재활은 장애인이 이런 제약을 극복하는 데 도움을 주는 방향으로 진행되어야 한다. 이를 위해서, 몸통과 팔 기능 향상, 즉각적인 개인 주변 환경 구조 변경, 장애인이 지속적으로 가족과 직장에서 역할을 수행할 수 있도록 보조 기기와 다른 정당한 편의를 제공해야 한다. 94 척수 손상의 국제적 관점
비록 개인차가 있기는 하겠지만, (표 4.1)은 다양한 수준의 완전 척수손상에 있어서 바람직한 기능적 결과(이동, 자기 신변 처리, 가사 활동)를 대략적으로 정리해 놓았다. (표 4.1) 손상 후 1년이 지난 완전 운동 사지마비 장애인과 완전 하지마비 장애인의 기능적 결과 예측 완전 사지 마비 장애인의 기능 결과 예측 내용 식사 경수 1-4번 의존 의존 상체 의복 의존 착용 하체 의복 의존 착용 목욕 침대이동 의존 의존 경수 5번 경수 6번 경수 7번 경수 8번 – 흉수 1번 자립 보조기기 기술을 이용한 보조기기 기술과 상관 자립 자립 없이 자립
보조기기 기술을 이용한 보조기기 기술을 이용한 보조기기 기술을 이 자립 자립-지원 필요 자립 지원 필요 용한 자립 지원 필요 의존 의존 지원 필요 자립 지원 필요 자립 자립
적응장비를 이용한 대게는 자립 자립 지원 필요
보조기기 기술을 이용한 보 조 기 기기 술 을이 용 한 자립 자립 지원 필요 자립 지원 필요 자립 자립 자립 자립 자립
무 게 중 심 전동 틸트나 리클라인 만약 전동 틸트나 리클라인 자립 (기 )기 착 한 (기울임) 기능이 없는 전동 이동 울 임 능 을장 전동 휠제어로 자립 휠체어라면 지원 필요 트랜스퍼 의존 지원 필요
평평한 지역에서 혼자 평평한 지역에서 자립 트랜스퍼위해서는 도움 트랜스보드에 상관 필요 없이 자립
휠체어 밀 전동 휠체어를 사용 전동 휠체어를 사용해 자 평평한 지역에서 수동 곡선길과 평평하지 자립 기 해 자립, 수동 휠체어 립, 평평한 지역에서 적응 휠체어를 사용해 자립 않 은지 역 을제 외 하 고 일 경우 의존 을 통해 수동 휠체어 에서 수동 휠체어로 자립 도 일정부분 자립 운전 의존 적응을 통한 자립 적응을 통한 자립 적응을 통한 자립 적응을 통한 자립
완전 하반신마비 장애인의 기능 결과 예측 흉수2–9번 일상생활 활동 (그루밍, 식사, 옷입기, 목욕) 장과 방광 트랜스퍼 보행 자립 자립 자립 자립 자립 자립 흉수10번–요수2번 자립 자립 자립 L3–S5
단지 운동만 가능. 보장구, 목발/ 가정에서는 보장구 사용, 외부 자립 가능 그러나 보장구, 목발, 보행기를 이용 에서는 보장구와 목발 사용 지팡이가 필요할 수도 있음
용어: 의존 – 업무 수행을 위해 다른 사람이 필요한 척수장애인. 지원 필요– 다른 사람이 도움을 주는 경우 활동 수행이 가능한 척수장애인. 도움의 수준은 최소, 보통, 높음. 자립 – 보조기기 기술과 상관없이 그리고 어떤 형태의 활동 보조인 없이도 업무 수행이 가능한 척수장애인. 출처: Wolters Kluwer, Lippincott Williams & Wilkins의 동의 아래 발췌 (87).
4. 보건 의료와 재활의 요구 95
광범위한 재활 방법이 기능을 향상시키거나 손상된 기능을 회복시키기 위해 사용된다. 관련된 몇 가지 재활 방법을 다음 섹션에서 소개한다.
기능 향상, 회복, 유지를 위한 운동: 운동은 근력과 상체의 팔 기능을 향상시키기 위한 주요한 재활 방법이며, 집중 연습(높은 수준의 반복 운동)과 전기 자극과 같은 방식을 포함할 수 있다(19, 88-90). 다리와 관련된 운동 방법으로는 스트레칭, 다양한 움직임, 근력 강화를 위한 수동적·능동적 운동, 근육 전기 자극, 보장구, 목발, 보행기, 평행봉과 같은 보조 기기 기술 사용과 더불어 다양한 보행 재훈련 등이 있다(13, 19, 91, 92). 운동은 근력과 지구력 강화, 경직 완화, 관절 부위 운동 능력 향상, 통증 경감, 심폐 지구력 향상을 포함해 여러 가지 심리적, 생리적인 장점과 관련이 있기 때문에 척수장애인에게 중요하다(93-95).
새로운 전략과 테크닉 교육: 재활은 사람들이 활동을 위한 새롭고 대안적인 방법을 배우고 습득 하는 데 있어 지원과 지침을 제공한다. 광범위한 대안적인 전략과 테크닉은 척수장애인의 활동 제약을 극복하기 위해 사용될 수 있다. 예를 들어, 남아 있는 근육 기능을 이용해 새로운 옷 입는 방법 학습, 옷 입는 것을 용이하게 할 수 있는 의복 착용법 학습, 자립 능력을 강화하기 위해 다양한 도구를 이용해 음식물을 섭취하는 방법 학습, 효율성을 극대화하고 힘을 아끼기 위해 개인 신변 처리와 같은 일상적인 활동 수정, 적절한 방식으로 업무를 다시 분장하는 내용 등이 해당된다. 성공 적인 재활이란 개인이 다양한 환경 속에서 자신들이 배운 것들을 일반화할 수 있어야 한다. 그러 므로 치료 환경의 외부 영역인 집과 지역 사회와 같은 곳에서 새로운 전략과 테크닉을 연습할 수 있는 기회가 더욱 중요하다.
(개인의 주변 환경 개선을 포함한) 보조 기기 기술의 제공: 보조 기술은 재활의 중요한 요소이며, 척수장애인에게 대단히 중요하다. 왜냐하면, 이를 통해, 척수장애인은 가능한 것보다도 훨씬 더 높은 수준의 자립인 식사, 의복 착용, 이동과 같은 일상생활을 수행할 수 있기 때문이다. 마찬가지로 환경 개선을 통해 기능적인 장애물을 제거할 수 있는데, 다음의 내용과 7장에서 논의하는 것처럼 퇴원 이전에 환경 개선이 고려되어야 한다. 이용자와 돌봄 제공자는 적절한 관리와 보조 기기 기술에 대해 교육을 받아야 한다. 예를 들어, 교육을 받은 휠체어 이용자는 보다 우수한 기능적인 결과와 만족감을 보여 줄 가능성이 높은 것으로 나타났다(96). 적절한 보조 기기 기술 제공으로 척수장애인은 힘을 얻을 수 있고, 교육, 고용, 오락 등 삶의 모든 영역에서 자립과 참여에 있어 상당한 성과를 거둘 수 있다.
수술적 개입의 고려: 추가적으로 상체(상지) 부위의 신경학적, 기능적 개선을 더 이상 기대할 수 없을 경우, 비록 모든 척수장애인에게 해당되는 방안이 못 될 수도 있고 많은 사람들에게 적용할 수도 없겠지만, 재건 수술이 하나의 선택이 될 수도 있다(97). 수술은 팔꿈치나 손목 펴기, 손이나 손가락으로 잡기 등을 향상시키기 위해 하나 혹은 다수의 근육과 힘줄을 이식하는 것이다(13). 수술
96 척수 손상의 국제적 관점
이후에는 일정 기간 동안 움직이지 않아야 하며, 이후 목표를 정하고 운동을 해야 한다. 많은 경수 장애인이 수술로 상지 운동 능력과 기능 향상을 이룰 수 있었으나, 수술의 이익과 불이익, 적절한 재활의 이용 가능성을 따져 보듯이 수술에 앞서 개인적 상황을 반드시 고려해야 한다(89, 98, 99).
정신 건강 관리 문제 6장에서 더 자세히 설명하겠지만, 손상 이후 기간 동안 당사자 개인과 가족은 적응의 과정을 시작 하면서 거부, 슬픔, 절망, 두려움, 좌절, 분노를 포함한 일련의 감정을 종종 경험하게 될 것이다. 성별 , 연령 , 개성 , 적응 스타일을 포함한 개인적 요인 , 정신 질환 발병 전의 정신 건강 상태 (예 : 절망, 분노, 음주, 약물 복용 등), 외상 후 스트레스 장애(PTSD)와 같은 관련 요소가 개인이 손상에 얼마나 잘 적응할 수 있는지에 대해 영향을 미치게 될 것이다. 문화적 믿음과 가치, 태도, 사회적 지원, 적절한 보조 기기 기술의 제공, 사회경제적 상태를 포함한 환경적 요인도 또한 적응에 영향을 미친다(13, 48, 100-104). 우울증은 손상 이후 단계에서 척수장애인에게 특히 취약한 일반적인 정신 건강 상태이다. 최근 조사에 따르면, 약 20-30%의 척수장애인이 임상학적으로 유의미한 우울증 증상을 경험한 것으로 나타났다 (105). 우울증은 당사자 개인과 가족 모두뿐만 아니라 의료 시스템에도 상당한 영향을 끼친다. 우울증은 기능적 측면의 향상을 더디게 만들며, 욕창, 요로 감염(UTI), 높은 자살률, 재입원율 증가, 높은 의료 비용 등 건강에 수반되는 문제도 증가시킨다(101, 104, 106). 우울증과 같은 정신 건강 상태는 종종 척수손상의 자연스러운 결과로 간주되어 적절한 대처가 이루어 지지 않고 있다(101). 적응 과정의 관리를 위해 조기 검사와 평가, 교육, 이용 가능한 지원 서비스와 관련된 정보 그리고 자원과 같은 관리 조치의 시의적절한 제공, 카운슬링과 잠재적 약물 복용, 장기간에 걸친 지속적인 모니터링 등이 필요하다(13, 48, 104, 106, 107). 동료 멘토링과 지원은 척수장애인의 재활 프로그램에서 중요한 요소가 되고 있으며, 이런 요소가 적응과 기능적 측면 향상에 기여한다는 근거도 있다(108-111).
▶ 보조 기기 기술 “보조 기기 기술”이란 용어와 기타 이와 관련된 용어는 박스 4.1에 정리했다.
보조 기기 기술에 대한 요구 보조 기기 기술에 대한 요구는 대개 척수손상 발생 시점부터 생겨나서 평생 지속된다. 필요한 보조 기기 기술의 형태는 척수손상의 수준, 관련된 손상, 환경 요인(예: 물리적 환경, 지원, 관계 등), 개인적 요인(예: 연령, 건강 상태, 라이프스타일 등), 기타 동반하는 건강 조건에 의해 영향을 받는다. 휠체어, 환경 통제 시스템, 컴퓨터 기술은 대부분 광범위하게 사용되는 보조 기기 기술이다(112). 휠체어는 척수장애인이 사용하는 가장 중요한 형태의 이동 수단 중 하나이다(113, 114). 예를 들어, 4. 보건 의료와 재활의 요구 97
덴마크에서 진행된 연구에서는 외상성 척수손상 이후 10-45년의 기간 동안 이동 기기가 필요하지 않은 경우는 236명의 척수손상 대상자 중 3.4%에 지나지 않았고, 반면 83.5%는 수동 휠체어를 그리고 27%는 전동 휠체어를 사용한 것으로 나타났다(115). 마찬가지로 호주의 연구에서도 많은 척수장애인에게 이동 보조 기기는 중요한 또는 정말로 필요한 요소인 것으로 밝혀졌다(116). 미국 에서 진행된 연구도 이동과 자립 생활을 위한 기기가 척수장애인이 소유한 가장 일반적인 장비 이며 , 소수가 컴퓨터 기술 , 인공 의족(prosthetics), 보조기 (orthotics), 보완 대체 의사소통 (AAC) 기기를 추가적으로 사용하는 것으로 나타났다 (117). 사지마비와 같은 높은 수준의 척수 장애인은 특히 하지마비 장애인보다 현저하게 많은 보조 기기를 소유하고 있다(117). 보조 기기 기술에 대한 요구는 장애인이 지역 사회의 삶이나 직장으로 돌아갔을 때, 학교에 입학할 때와 같은 전환 기간 동안 변할 수도 있으며, 삶의 조건이나 건강 상태, 혹은 기능 측면의 손실, 회복의 경험에 따라 변하게 된다(118). 나이가 들어가면서 척수장애인은 기능적 자립이 감소하는 경험을 하게 될 것이며, 이는 수동 휠체어 대신 전동 휠체어가 필요한 것처럼 보조 기기 기술을 바꾸어야 할 필요가 생긴다는 것이다(119).
보조 기기 기술의 형태 박스 4.2에서 척수장애인과 관련된 보조 기기 기술의 포괄적인 정보를 제시하였다. 보조 기기 기술은 종종 기능적인 요구에 따라 분류되고, 이동 기기, 커뮤니케이션 기기, 자가 신변 처리 보조 기기, 가사 활동 보조 기기, 환경 통제 시스템 등으로 나누어진다. (표 4.2) 척수장애인을 위한 보조 기기 기술의 형태 활동 영역 이동 이 영역은 자세 변경과 유지, 트랜스퍼링, 보행과 이동, 물건 운반과 핸들링, 손과 팔 사용, 교통수단 사용과 같이 이동 및 여행과 관련된 모든 활동을 포함한다. 예 척추보조기(Spinal orthoses): 이 보조기는 척수 손상의 부위와 정도에 따라 결정되고 경추고정대 (cervical collars), 경추부보조기(SOMI), 흉요천추 보조기를 포함한다.목적/혜택 척추보조기는 손상 이후 척추를 안정화, 뼈와 연부 조직의 회복, 추가적인 손상 예방, 통증 감소를 위해 급성기 단계에서 사용한다(120). 회복 단계에서는 신체 변형 방지, 자세 교정, 움직임을 제약하기 위해 사용한다. 하지보조기는 경직을 조절하고 변형을 방지하기 위해 상지 자세를 고정시키는 장비이다. 이 보조기는 또한 근육의 약화와 관절 불안정을 보완해 주고, 보행을 위해 적절한 하지 강화가 필요한 사람에게 도움이 된다(121). 보행보조기는 근육 약화, 잘못된 협응 (coordination), 균형감 저하를 보상하기 위해 보행하는 동안 추가 적인 안정성을 확보해 준다.
하지보조기(Lower limb orthoses): 이 보조기는 엉덩이, 무릎, 팔목, 발을 지지하기 위한 버팀대/부 목을 포함한다. 가장 일반적인 예는 발목관절 보조기 (AFO)이다.
기타 보행 보조기: 목팔, 지팡이, 보행기.
98 척수 손상의 국제적 관점
활동 영역
예
목적/혜택
휠체어: 수동 휠체어(자신이 혹은 활보가 구동 휠체어는하지의 힘이 보행을 할 만큼 충분하지 않을 하거나, 바퀴가 셋 혹은 넷), 전동 휠체어(머리, 턱, 때 사용하고, 다양한 범위의 운동 능력에 맞추어 혹은 손으로 조정), 수동 3륜 자전거, 스쿠터 포함. 적용할 수 있다(122). 예를 들어, 수동 휠체어는 상지를 사용해 조정할 수 있고, 전동 휠체어는 손 가락의 작은 움직임으로 컨트롤 스틱을 조정하거나 심지어는 손 움직임이 부적절한 사람들의 경우 머리 컨트롤(123)을 사용해 조정할 수 있다. 트랜스퍼 보조기기: 슬라이드 시트(slide sheets), 트랜스퍼 보조기기는 돌봄제공자가 척수장애인의 트랜스퍼 보드, 호이스트. 체위를 변경하거나 장소 이동을 용이하게 하도록 도움을 주며, 양쪽 모두의 부상 위험을 감소시켜 준다. 자세보조용 시스템: 앉는 자세를 잡아주는 기기; 앉거난 자세를 잡아주는 시스템은 일상 활동의 최 압력 완화와 편안함을 위한 쿠션; 머리/흉부/골반/ 적의 기능 발휘를 촉진하고, 관절 움직임과 근육 엉덩이/다리 지지 기기; 스탠딩 테이블; 자세 잡아 길이를 유지해 구축과 변형을 예방, 그리고 피부 주는 벨트를 포함. 손상과 욕창 방지를 위한 목적으로 사용된다(46, 48, 124). 상지보조기(Upper limb orthoses): 어깨, 팔꿈치, 고정형 부목은 구축과 변형을 방지 하기 위한 팔목, 손을 지지하기 위한 부목. 예를 들어, 정적 손의 위치잡기에 도움이 된다. 동적(moveable) (resting)부목, 건고정(tenodesis)부목 (팔목을 부목은 마비되고 약한 근육을 지지하며, 따라서 지지해 잡는 기능 보강), 쇼트 핸드 부목, 기능적 손과 상지의 기능을 향상시킨다. 예를 들어, 손목 사용 부목 (음식물 섭취, 필기, 타이핑 부목) 등이 작동 손목-손 보조기(혹은 flexor hinge splint)는 있다. 손가락 힘이 약한 사람이 손목 힘을 사용해 손을 쥘 수 있도록 해준다. 특히 경수5, 6, 7번 손상 척수장애인의 손 기능 향상에 도움이 되는 것으로 알려졌다(125). 모바일 팔지지대는 테이블이나 휠체어에 고정해 팔을 수평적으로 이동할 수 있게 하는 한편 중력에 반해서 사람의 팔을 지지한다. 음식물섭취, 위생관리, 필기 등의 일을 할수 있도록 도와준다(126). 운전과 교통수단 : 휠체어를 실을 수 있도록 척수장애인은 종종 교통수단을 주요한 장애물로 경사로나 리프트 시스템이 장착된 벤; 가속, 브레 인식한다. 맞춤형 차량 운전은 지역사회로의 이크, 회전을 위해 맞춤형 핸드 컨트롤을 장착한 통합, 고용에 접근, 보건의료 서비스에 접근, 전동 자량; 차량 도어 개폐장치, 핸들, 트랜스퍼 작지만 건강과 관련된 양질의 삶 회복을 촉진 지원을 위한 회전 좌석 같은 액세서리를 포함. 한다(127).
4. 보건 의료와 재활의 요구 99
활동 영역 커뮤니케이션 이 영역은 메시지를 수 취, 생산하거나 대화에 참여하는 것과 같은 커 뮤니케이션과 관련된 모든 활동을 포함한다 (4). 또한 커뮤니케이션과 관련해 모든 형태의 정보에 대한 접근을 고려해야 한다.
예 커뮤니케이션을 위한 기기를 종종 “보완대체의사 소통” (AAC) 기기로 분류하며, 커뮤니케이션 보드, 스피치 증폭기, 스피킹 밸브, 전자 스피치 출력 장비, 안구 트랙킹 혹은 머리 트랙킹 기술이 접목된 컴퓨터 스피치 프로그램 등으로 구성된다.
목적/혜택 높은 부위의 척수손상은 호흡 근육에 영향을 주게 되어 기관절개를 통한 기계적인 인공호홉기 사용이 필요할 수도 있다. 기관절개를 한 사람들의 경우 스피킹 밸브가 말을 하는데 도움을 줄 수 있다. 만약 말이 약하거나 잘 나오지 않는 경우 보완 대체의사소통((AAC )으로 사람들이 스스로를 표현하는데 도움을 줄 수 있다. 컴퓨터 기술은 사람들이 인터넷을 통한 정보의 접근, 커뮤니케이션에 대한 대안적인 혹은 추가 적인 수단 제공, 그리고 교육, 고용, 오락 등에 참여를 가능하도록 해준다.
컴퓨터기술 : 예를 들어 , 이 기술에는컴퓨터 스크린에 커서를 움직일 수 있는 조이스틱이나 터치 스크린 같은 대안 입력 장비 (128); 확장 개선된 키보드; 마우스 스틱 컨트롤; 음성 입력 스위치 (129); 스크린 키보드의 목표물을 선택하기 위해 눈을 사용해 움직이는 아이게이즈 스위치; 선택을 유발하는 α파 자극에 대응하는 뇌파 기술 (130) 등이 포함된다. 목욕과 샤워: 샤워의자, 목욕 벤치, 트랜스퍼 보드, 욕실 안전 손잡이, 목욕 타월, 긴 손잡이가 달린 목욕 스펀지와 브러쉬. 그루밍과 위생: 헤어브러쉬, 빗, 치솔, 면도기, 장착형 거울, 연장 혹은 구부러지는 핸들. 화장실: 환자용 변기, 바퀴달린 의자용 변기, 맞춤형 화장실 의자. 의복 착용: 드레싱 스틱, 버튼훅, 지퍼풀, 긴 자루가 달린 양말, 스타킹과 신발 착용 보조기구. 음식과 음료 섭취: 테두리가 올라간 접시와 볼; 장착형 주방도구, 중량감이 있는 구부러진 핸들; 뚜껑 있는 컵, 빨대, 변형 손잡이나 두 개의 손잡이. 다음의 내용들이 포함: 접시나 도마가 미끄러지는 지는 것을 방지하기 위한 미끄럼 방지 매트; 칼질 하는 동안 음식물을 고정하기 위한 개선된 도마; 구부러지고 편안한 손잡이를 가진 조리 도구; 병이나 단지 오프너; 주전자 보조받침; 마개와 손잡이 돌리는 장비 등이다. 불위나 땅에서 요리를 할 때 필요한 도구나 음식을 옮길 수 있는 낮은 수레, 넘어지지 않는 냄비와 팬, 뜨거운 물건을 밀거나 당길 때 유용한 집게 등도 있다.
자가신변처리 이 영역은 스스로 씻거나, 신체의 부분을 관리 하거나, 화장실, 의복 착용, 음식과 음료 섭취와 같은 자기 신변처리와 관련된 활동을 포함 한다.
자가신변처리 보조기기는 신체 기능에 제약이 있는 사람들이 (상지와 하지의 사용이 어려운 경우) 약간의 혹은 전혀 도움이 없어도 자기신변 처리 활동을 수행할 수 있도록 도와준다. 쥐는 힘이 약하고 협응이 잘 않되고 움직임에 범위가 제한적일 경우 사람이 움직일 수 있고 물체를 조작할 있도록 도와준다 . 자기 신변 처리의 적절한 관리는 개인이 학교와 직장에서 사회적 역할을 다시 수행하는데 있어 중요한 부분이다. 거울과 같은 기구는 욕창의 조기 발견에 있어 중요한 역할을 수행한다.
가사 활동 이 영역은 식사 준비와 가정 내의 일과 같은 일상 가사 활동 및 가사 업무와 관련된 활동을 포함한다.
이 보조기기 기술은 신체 기능의 제약이 있는 사람들이 (상지와 하지의 사용이 어려운 경우) 약간의 혹은 전혀 도움이 없어도 가사 활동을 수행할 수 있도록 도와준다.
기타 환경 통제 내용.
예: 스위치를 이용해 리모트 컨트롤과 특수 적용 척수장애인은 TV, 컴퓨터, 전화, 등, 문과 같은 기기 등을 접근 가능한 형태로 변화 시킴 (예, 머리 주변 환경 기기의 조정 능력을 잃어 버릴 수 위치, 턱, 눈썹, 호흡으로 조정할 수 있는 스위치). 있다. 환경 통제 시스템은 척수장애인이 이러한 조정 능력을 회복할 수 있도록 도와준다(131).
100 척수 손상의 국제적 관점
보조 기기 기술과 관련된 결과 보조 기기 기술에 대해 광범위한 접근해 보면, 척수장애인은 보조 기술이 없었으면 수행할 수 없었을 일상 활동을 수행할 수 있게 되었다(115, 117, 126, 132-135). 휠체어를 사용해 지역 사회에서 이동 할 수 있는 것처럼 보조 기기 기술은 척수장애인이 일상의 영역에서 자립과 자율성을 높이는 데 도움을 줄 수 있다(136). 환경 통제 시스템은 사람들이 TV, 컴퓨터, 전화, 전등, 문과 같은 주변 환경 기기에 대한 통제력을 다시 획득하도록 도움을 줄 수 있다 (131). 캐나다 연구에서는 환경 통제 시스템을 사용하는 장애인이 일상생활 활동과 관련된 75%의 업무에서 더욱 뛰어난 기능적 능력을 보였으며, 이는 그들의 삶에 매우 긍정적인 사회·심리학적 영향을 끼치고 있는 것으로 나타났다(137). 보조 기기 기술의 사용은 지역 사회, 사회적, 시민적 삶의 참여와 관련이 있다(138-140). 보조 기기 기술은 척수 장애 아동의 학습과 능력 개발을 증진하고(141) 이동, 교육, 사회적 관계 형성을 가능 하게 해 주는 (142) 등 매우 중요한 역할을 수행할 수 있다. 보조 기기 기술은 성공적인 일자리 창출에 기여할 수 있고 척수장애인의 사회 통합과 복귀에 도움을 줄 수 있다(122, 133). 보조 기기 기술은 또한 삶의 질을 향상시킬 수 있다. 예를 들어, 환경 통제 시스템을 사용한 경우, 이용자가 자신의 능력 , 적응력 , 자존감을 인지하는 데 긍정적인 영향을 미치며 (137, 143), 이 시스템을 사용하지 않는 사람들에 비해 삶의 질에 대한 만족감도 상당히 높은 것으로(144) 연구 결과 드러났다. 보조 기기 기술을 사용하지 않는 척수장애인은 기능적 제약을 경험하게 될 것이고 타인의 지원에 대한 의존성이 높아졌다(144). 과테말라에서 신경근 질환을 가진 장애 아동을 돌보는 돌봄 제공자를 대상으로 한 연구에 따르면 (139), 보조 기기 기술은 돌봄 제공자에 대한 의존도를 낮출 수 있고 (145) 돌봄 제공자의 시간과 물리적 부담을 줄일 수 있다(132). 보조 기기 기술의 경제적 혜택에는 임금 손실과 같은 가족 지원과 관련된 비용, 공식 지원 서비스 비용 감소 등이 포함된다(44, 132, 146, 147).
▶ 건강 유지 관리 2장에서 밝혔듯이, 척수장애인의 기대 수명은 의학의 발전 및 의료 치료, 재활, 지원 시스템에 대한 접근성 개선의 결과로 시간이 흐름에 따라 꾸준히 늘어났다(148-150). 기대 수명이 선진국에서는 일반 국민 수준에 접근하기 시작했지만, 개발도상국에서의 사망률과 질병률은 투자를 늘리지 않고는 낮은 수준에 머물 수밖에는 없을 것으로 예상된다. 국민으로서 장애인은 일반 국민보다 훨씬 열악한 건강 상태를 경험한다는 근거가 있다(44). 이것은 척수장애인에게도 마찬가지로, 척수장애인은 종종 ‘부족하고 취약한’ 건강의 경계선이라 언급되는 상황을 경험하고 있다. 이것은 손상의 정도 및 부위와 같은 척수손상의 특징에 의해 많은 영향을
4. 보건 의료와 재활의 요구 101
받는다(150). 이전에도 밝혔지만, 척수장애인은 폐렴, 욕창, 요로 감염과 같은 이차 합병증에 걸릴 위험이 매우 높다(49, 151). 이런 상태로 인해 종종 재입원 상황이 발생하고, 관리 비용의 증가, 고용 상태의 악화, 삶의 질 저하, 기대 수명 하락으로 이어진다(49, 152-155). 척수장애인은 심장 질환, 뇌졸중, 당뇨병과 같이 비장애인들이 겪는 만성 질환에 걸릴 위험도 높다. 또한 척수장애인이 비장애인보다 이러한 질병에 걸릴 가능성이 더 크다는 근거가 있다(156-160). 허혈성 심장 질환은 전체 국민 대비 훨씬 높은 발병률을 보이며 호주에서는 척수장애인의 주요 사망 원인으로 알려져 있다(157). 척수장애인의 만성 질환은 근육량 감소와 지방 조직 증가, 마비에 따른 활동 감소, 자율 신경 실조증, 신진대사 변화와 같은 신체 구성 변화와도 관련이 있다(152, 156, 158, 161). 그리고 척수장애인에게서 높이 나타날 수 있는 잘못된 식생활, 흡연, 음주와 같은 기타 다른 위험 요인들과도 관련이 있을 수 있다(159, 162, 163). 척수장애인이 오랫동안 건강 상태를 유지하기 위해서는 다음의 사항들을 꼭 인식해야 한다. (i) 구 체적으로 척수손상과 관련되어 건강 문제가 위험에 노출되어 있기 때문에 척수장애인은 일반, 특별 서비스 모두에 대한 지속적인 접근이 필요하다(151) (ii) 또한 척수장애인은 비장애인에 비해 건강이 악화될 위험이 높기 때문에 건강 증진, 예방 관리(면역, 건강 검사), 응급 및 만성 질환 치료와 같은 주류 서비스에 대한 접근이 필요하다(44). 신체적 활동 참여는 심리적인 건강과 웰빙에 혜택을 줄 수 있으나, 환경적인 장애물이 존재하는 한 정규적인 운동 프로그램에 꾸준히 참여하는 것이 어려울 수도 있다(164). 왜냐하면 이런 장애물로 인해 상당 부분 신체 활동이 줄어들 수 있기 때문 이다(165). (표 4.3)은 척수장애인과 관련된 여러 가지 구체적이며 일반적인 건강 유지 관리 방법을 소개하고 있다. 명심할 점은, 이런 표는 단지 일반적인 개괄 정보만을 제공하는 것이고, 각각의 국가 안에서 구체적인 가이드라인과 기준의 설정을 고려해야 한다는 것이다. 건강 관리 제공자, 척수장애인, 가족 모두가 건강 유지 관리 계획 개발과 실행에 참여해야 한다.
102 척수 손상의 국제적 관점
(표 4.3) 건강 유지 관리 방법의 예 건강 영역 비뇨생식기 방법 정기적으로 방광 관리 프로그램 검토. 방광 기능에 변화가 있을 경우 추가적으로 검사 (예, 요폐, 실금 사례, 요로감염, 혈뇨 등). 신장 기능 테스트 정기적으로 요로 이미지 검사 시행. 남성의 경우 전립선 암 검사 시행. 정기적으로 장 관리 프로그램 검토. 장 기능에 변화가 있을 경우 추가적으로 검사 (예, 변비, 설사 등). 중년 이후 일상적으로 직장 검사 시행. 고섬유식 식사와 하루에 정기적으로 음료(물) 섭취 권장. 변의 횟수, 색깔, 굳기 등을 포함한 장 기능의 정기적 모니터링 실시. 정기적인 콜레스트롤, 지방, 혈압 체크. 위험 요인 검토(예, 식생활과 흡연). 위험 요인 관리 교육 및 지원 제공. 매주 정기적인 유산소 운동 권장. 심리사회적 기능 검사와 모니터링 (예, 우울증). 지원 제공 및 유지를 위해 돌봄 제공자 능력 검토. 적절한 식생활과 운동에 대한 교육 및 지원 제공. 지역 사회 참여 장려. 신경계/근골격계 기능 검토, 특히 감각, 근육의 힘과 긴장도, 움직임의 가동 범위가 변하거나 통증이 증가하는 경우, 검사 시행. 특히 상지 부위에 있어서, 과다 사용으로 인한 손상을 방지하기 위한 교육과 훈련 제공. 매주 정기적인 운동 장려. 올바른 적합성 및 기능 보장을 위해 보조기기 기술 검토. 감염 예방과 관리를 위한 교육과 전략 제공. 정기적인 호흡기 검사 시행 (예, 폐활량, 최대 호흡 등) 인플루엔자와 폐렴구균성 폐렴 감염 예방 금연을 위한 지원 제공 및 격려. 여성에 대한 자궁경부암 검사와 부인과 검사 시행. 여성에 대한 유방 검사 실시. 일상 피부 검사 방법 교육 실시. 적절한 영양 공급 교육 실시. 매 두시간 마다 체위 변경에 관한 교육 실시. 올바른 적합성 및 기능 보장을 위해 정기적으로 보조기기 기술 검토 (예, 휠체어와 좌석 보조 시스템 등).
장
심혈관계
정신 건강과 웰빙
신경계/ 근골격계
호흡기
성과 재생산 기능
피부
4. 보건 의료와 재활의 요구 103
결론과 제안
적합하고 시의적절한 의료 치료와 재활(보조 기기 기술 포함)의 제공은 사망률과 질병률 그리고 척수 손상 당사자의 장애에 상당한 영향을 미친다 . 특수 , 주류 양방향의 보건 의료에 대한 접근은 척수 장애인에게 더 좋은 결과와 생산적이고 즐거운 삶을 약속할 수 있다. 다시 한 번 강조하지만, 이 장은 척수장애인의 건강 요구와 관련된 오직 일반적인 정보를 제공하기 위해 작성되었다 . 따라서 동료나 저널 , 의료 /재활 서적 , 매뉴얼 , 가이드라인 , 건강 관련 종사자와 전문가 단체를 통해 획득할 수 있는 정보를 바탕으로 한 포괄적인 임상 가이드라인이 필요하며, 그 가이드라인은 특정 국가와 상황에 맞추어 사용되어야 한다. 5장에서는 척수장애인의 요구에 부합한 건강 시스템의 기능을 향상시키기 위해 국가가 수행해야 할 내용에 대해서 알아볼 것이다. 4장에서 나타난 척수장애인의 건강 요구 분석과 관련된 정책과 실천 내용은 아래의 이슈를 고려해야 한다. • 손상 이후에 즉각적으로 척수손상과 관련된 복잡한 문제에 대처하고 필요하다면 신경학적 기능 보존을 위해 특수한 보건 의료 서비스에 대한 신속한 접근이 필요하다. • 재활에 대한 접근은 가능하면 손상의 급성기 단계와 같이 초기에 이루어져야 하며, 기능적 결과물의 극대화와 지역 사회 삶으로의 전환을 촉진하기 위해 꾸준히 제공되어야 한다. • 광범위한 보조 기기 기술에 대한 접근은 기능의 변화를 수용하는 데 도움을 주고 자립을 극대화할 수 있을 것이다. • 재활 병동 서비스가 끝난 이후, 특히 손상 후 최초 12개월 동안 발생할 수 있는 문제에 대처하기 위해 추가적인 관리 조치를 제공해야 한다. • 척수장애인이 폐렴, 요로 감염, 욕창과 같은 이차 합병증의 위험이 높다는 점을 인지해야 하며, 따라서 지속적 으로 주류의 또는 특수한 의료 치료에 대한 접근이 필요하다. • 척수장애인은 또한 비장애인에게 발생하는 급성, 만성 질환에 대처하기 위해 건강 증진, 예방, 의료 치료를 포함한 주류 보건 의료 서비스에 대한 접근이 필요하다. • 척수장애인 당사자와 가족이 포함된 협력적, 통합적, 다각적 접근법은 입원 시, 퇴원 후, 그리고 지역 사회 중심 관리로의 원활한 이전을 보장하는 데 도움을 줄 수 있을 것이다. • 척수장애인 당사자와 가족은 교육과 역량 강화를 통해 최대한도로 자신의 건강을 돌볼 수 있는 능력을 갖추어야 한다. • 다양한 상황에서 기능 회복을 위해 가능한 범위 내에서 최선의 재활 조치를 결정하기 위한 지속적인 임상 연구가 필요하다.
104 척수 손상의 국제적 관점
▶ 참고 문헌 1. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/disabilities-convention.htm, accessed 9 May 2012). 2. Kirshblum SC et al. International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 2011, 34:535-546. doi: http://dx.doi.org/ 10.1179/204577211X13207446293695 PMID:22330108 3. Alexander MS et al. International standards to document remaining autonomic function after spinal cord injury. Spinal Cord, 2009, 47:36-43. doi: http://dx.doi.org/10.1038/sc.2008.121 PMID:18957962 4. WHO. International classification of functioning, disability and health. Geneva, World Health Organization, 2001. 5. Krassioukov A et al. A systematic review of the management of orthostatic hypotension after spinal cord injury. Archives of Physical Medicine and Rehabilitation , 2009, 90:876-885. doi: http://dx.doi.org/10.1016/j.apmr.2009.01.009 PMID:19406310 6. Consortium for Spinal Cord Medicine. Autonomic dysreflexia: what you should know. Washington, DC, Paralyzed Veterans of America, 1997. 7. Krassioukov A et al. Autonomic dysreflexia following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–33 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 8. Teasell RW et al. Venous thromboembolism following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 9. Geerts WH et al. Prevention of venous thromboembolism: American College of Chest Physicians evidence-based clinical practice guidelines, 8th ed. Chest, 2008, 133(6):381S–453S. 10. Illman A, Stiller K, Williams M. The prevalence of orthostatic hypotension during physiotherapy treatment in patients with an acute spinal cord injury. Spinal Cord, 2000, 38:741-747. doi: http://dx.doi.org/10.1038/sj.sc.3101089 PMID:11175374 11. Claydon VE, Krassioukov A. Orthostatic hypotension and autonomic pathways after spinal cord injury. Journal of Neurotrauma , 2006, 23:1713-1725. doi: http://dx.doi.org/10.1089/neu.2006.23.1713 PMID:17184183 12. Krassioukov A et al. Orthostatic hypotension following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–20. (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 13. Bryce T. Spinal Cord Injury. New York, Demos Medical, 2010. 14. Cardenas DD et al. Impact of urinary tract infection educational program in persons with spinal cord injury. The Journal of Spinal Cord Medicine, 2004, 27:47-54. PMID:15156937 15. Consortium for Spinal Cord Medicine. Bladder management for adults with spinal cord injury: a
clinical practice guideline for health-care providers. Washington, DC, Paralyzed Veterans of America,
4. 보건 의료와 재활의 요구 105
2006. 16. Wolfe DL et al. Bladder health and function following spinal cord injury. In: Eng JJ et al., eds. Spinal
cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 17. National Institute on Disability and Rehabilitation Research. The prevention and management of urinary tract infections among people with spinal cord injuries. National Institute on Disability and Rehabilitation Research Consensus Statement. January 27−29 1992. The Journal of the American
Paraplegia Society, 1992, 15:194-204. PMID:1500945 18. Hsieh JTC et al. Spasticity following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury
rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 19. Harvey L. Management of spinal cord injury: a guide for physiotherapists. London, Elsevier, 2008. 20. Katalinic OM et al. Stretch for the treatment and prevention of contractures (review). Cochrane
database of systematic reviews (Online), 2010, (9):CD007455. PMID:20824861 21. Ashe MC et al. Bone health following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury
rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–26. 22. Craven BC et al. Detection and treatment of sublesional osteoporosis among patients with chronic spinal cord injury: proposed paradigms. Topics in Spinal Cord Injury Rehabilitation, 2009, 14:1-22. doi: http://dx.doi.org/10.1310/sci1404-1 23. Eser P et al. Bone loss and steady state after spinal cord injury: a cross-sectional study using pQCT. Journal of Musculoskeletal & Neuronal Interactions, 2004, 4:197-198. PMID:15615125 24. Frey-Rindova P et al. Bone mineral density in upper and lower extremities during 12 months after spinal cord injury measured by peripheral quantitative computed tomography. Spinal Cord, 2000, 38:26-32. doi: http://dx.doi.org/10.1038/sj.sc.3100905 PMID:10762194 25. Biering-Sorensen F et al. Non-pharmacological treatment and prevention of bone loss after spinal cord injury: a systematic review. Spinal Cord, 2009, 47:508-518. doi: http://dx.doi.org/10.1038/ sc.2008.177 PMID:19172152 26. Teasell RW et al. Heterotopic ossification following spinal cord injury. Syringomyelia following spinal cord injury. In: Eng JJ et al, eds. Spinal cord injury rehabilitation evidence, version 4. Vancouver, SCIRE, 2012. (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 27. Winslow C, Rozovsky J. Effect of spinal cord injury on the respiratory system. American Journal of Physical Medicine & Rehabilitation, 2003, 82:803-814. doi: http://dx.doi.org/10.1097/01.PHM. 0000078184.08835.01 PMID:14508412 28. Zimmer MB, Nantwi K, Goshgarian H. Effect of spinal cord injury on the respiratory sysem: basic research and current clinical treatment options. The Journal of Spinal Cord Medicine, 2007, 30:319-330. PMID:17853653 29. Sheel AW et al. Respiratory management. In: Eng JJ et al., eds. Spinal cord injury rehabilitation
106 척수 손상의 국제적 관점
evidence,Volume 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–46 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 30. Consortium for Spinal Cord Medicine. Respiratory management following spinal cord injury: a clinical practice guideline for health-care professionals. Washington, DC, Paralyzed Veterans of America, 2005. 31. Onders RP. Complete worldwide operative experience in laparoscopic diaphragm pacing: results and differences in spinal cord injured patients and amyotrophic lateral sclerosis patients. Surgical
Endoscopy, 2009, 23:1433-1440. doi: http://dx.doi.org/10.1007/s00464-008-0223-3 PMID:19067067 32. Brown R et al. Respiratory dysfunction and management in spinal cord injury. Respiratory Care, 2006, 51:853-868. PMID:16867197 33. Baastrup C, Finnerup N. Pharmacological management of neuropathic pain following spinal cord injury. CNS Drugs, 2008, 22:455-475. doi: http://dx.doi.org/10.2165/00023210-200822060-00002 PMID: 18484790 34. Cardenas DD, Jensen M. Treatments for chronic pain in persons with spinal cord injury: a survey study. The Journal of Spinal Cord Medicine, 2006, 29:109-117. PMID:16739554 35. Dijkers M et al. Prevalence of chronic pain after traumatic spinal cord injury: a systematic review. Journal of Rehabilitation Research and Development, 2009, 46:13-29. doi: http://dx.doi.org/10.1682/ JRRD.2008.04.0053 PMID:19533517 36. Bryce TN et al. International spinal cord injury pain classification: Part I: background and description. (Epub ahead of print) Spinal Cord, 2012, PMID:22182852 37. Bryce TN et al. International spinal cord injury pain (ISCIP) classification: Part 2: initial validation using vignettes. (Epub ahead of print)Spinal Cord, 2012, PMID:22310319 38. Finnerup NB, Baastrup C, Jensen TS. Neuropathic pain following spinal cord injury pain: mechanisms and treatment. Scandinavian Journal of Pain, 2009, 1 S1:S3-S11. doi: http://dx.doi.org/ 10.1016/S1877-8860(09)70003-5 39. Turner JA, Cardenas DD, Warms CA, McClellan CB. Chronic pain associated with spinal cord injuries: a community survey. Archives of Physical Medicine and Rehabilitation, 2001, 82:501-509. doi: http://dx.doi.org/10.1053/apmr.2001.21855 PMID:11295011 40. Cardenas DD et al. Gender and minority differences in the pain experience of people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1774-1781. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.027 PMID:15520972 41. Jensen MP et al. The impact of neuropathic pain on health-related quality of life: review and implications. Neurology, 2007, 68:1178-1182. doi: http://dx.doi.org/10.1212/01.wnl.0000259085.61898.9e PMID:17420400 42. Sawatzky B et al. Classification and measurement of pain in the spinal cord-injured population.
Spinal Cord, 2008, 46:2-10. doi: http://dx.doi.org/10.1038/sj.sc.3102137 PMID:17968403 43. United States Congress. Assistive Technology Act. United States Congress 2004 (Public Law 108–364) (http://www.ataporg.org/summaryact.html, accessed 2 August 2011).
4. 보건 의료와 재활의 요구 107
44. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/ publications/2011/9789240685215_eng.pdf, accessed 10 May 2012). 45. WHO. Consensus conference on wheelchairs for developing countries, Bengaluru, India, 6−11 November 2006 http://www.who.int/disabilities/technology/Wheelchair%20Consensus%20Conference% 20Report_Jan08.pdf, accessed 29 May 2012). 46. Consortium for Spinal Cord Medicine. Pressure ulcer prevention and treatment following spinal cord injury: a clinical practice guideline for health care professionals. Washington, DC, Paralyzed Veterans of America, 2000. 47. Regan M et al. Pressure ulcers following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury
rehabilitation evidence, Version 4, Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 48. Tharion G et al. Guidelines for care of persons with spinal cord injury in the community. Vellore, Christian Medical College, 2009. 49. Cardenas DD et al. Etiology and incidence of re-hospitalization after traumatic spinal cord injury: a multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2004, 85:1757-1763. doi: http://dx.doi.org/10.1016/j.apmr.2004.03.016 PMID:15520970 50. Gélis A et al. Therapeutic education in persons with spinal cord injury: a review of the literature. Annals of Physical and Rehabilitation Medicine, 2011, 54:189-210. doi: http://dx.doi.org/10.1016/ j.rehab.2011.03.004 PMID:21530443 51. Consortium for Spinal Cord Medicine. Early acute management in adults with spinal cord injury: a
clinical practice guideline for health-care providers. Washington, DC, Paralyzed Veterans of America, 2008. 52. Bernhard M et al. Spinal cord injury (SCI): prehospital management. Resuscitation, 2005, 66:127-139. doi: http://dx.doi.org/10.1016/j.resuscitation.2005.03.005 PMID:15950358 53. Harris MB, Sethi RK. The initial assessment and management of the multiple-trauma patient with an associated spinal injury. Spine, 2006, 31:S9-S15. doi: http://dx.doi.org/10.1097/01.brs.0000217924. 56853.0d PMID:16685243 54. WHO. Guidelines for essential trauma care. Geneva, World Health Organization, 2004. 55. WHO. Prehospital trauma care systems. Geneva, World Health Organization, 2005. 56. Fehlings MG et al. Early versus delayed decompression for traumatic cervical spinal cord injury: results of Surgical Timing in Acute Spinal Cord Injury Study (STASCIS). PLoS ONE, 2012, 7: doi: http://dx.doi.org/10.1371/journal.pone.0032037 PMID:22384132 57. Bagnall AM et al. Spinal fixation surgery for acute traumatic spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (1):CD004725. PMID:18254059 58. Fehlings M, Perrin R. The role and timing of early decompression for cervical spinal cord injury: update with a review of recent clinical evidence. Injury, 2005, 36:S13-S26. doi: http://dx.doi.org/ 10.1016/j.injury.2005.06.011 59. Fehlings MG. The timing of surgical intervention in the treatment of spinal cord injury: a systematic
108 척수 손상의 국제적 관점
review of recent clinical evidence. Spine, 2006, 31:S28-S35. doi: http://dx.doi.org/10.1097/01.brs. 0000217973.11402.7f PMID:16685233 60. Rechtine GR. Nonoperative management and treatment of spinal injuries. Spine, 2006, 31 Suppl:S22-S27. doi: http://dx.doi.org/10.1097/01.brs.0000217947.43730.a6 PMID:16685232 61. Wood K et al. Operative compared with nonoperative treatment of a thoracolumbar burst fracture without neurological deficit. A prospective, randomized study. The Journal of Bone and Joint
Surgery, 2003, 85-A:773-781. PMID:12728024 62. Harrop JS et al. Neurological manifestations of cervical spondylosis: an overview of signs, symptoms, and pathophysiology. Neurosurgery, 2007, 60 Supp1 1;S14–S20. doi:10.1227/01.NEU. 0000215380.71097.EC doi: http://dx.doi.org/10.1227/01.NEU.0000215380.71097.EC PMID:17204875 63. Vanichkachorn JS, Vaccaro AR. Thoracic disk disease: diagnosis and treatment. The Journal of the
American Academy of Orthopaedic Surgeons, 2000, 8:159-169. PMID:10874223 64. NCC-C. Metastatic spinal cord compression: diagnosis and management of patients at risk of or
with metastatic spinal cord compression. Cardiff, National Collaborating Centre for Cancer, 2008. 65. Lederle FA et al. Outcomes following endovascular vs open repair of abdominal aortic aneurysm: a randomized trial. Journal of the American Medical Association, 2009, 302:1535-1542. doi: http://dx.doi.org/10.1001/jama.2009.1426 PMID:19826022 66. Wang VY, Chou D, Chin C. Spine and spinal cord emergencies: vascular and infectious causes. Neuroimaging Clinics of North America, 2010, 20:639-650. doi: http://dx.doi.org/10.1016/j.nic.2010.07.006 PMID:20974380 67. Quinones-Hinojosa A et al. General principles in the medical and surgical management of spinal infections: a multidisciplinary approach. Neurosurgical Focus, 2004, 17:E1-E15. PMID:15636566 68. Anderson KD. Targeting recovery: priorities of the spinal cord injured population. Journal of Neurotrauma, 2004, 21:1371-1383. doi: http://dx.doi.org/10.1089/neu.2004.21.1371 PMID:15672628 69. Anderson KD et al. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 2007, 45:328-337. PMID:17033620 70. Ditunno PL et al. Who wants to walk? Preferences for recovery after SCI: a longitudinal and cross-sectional study. Spinal Cord, 2008, 46:500-506. doi: http://dx.doi.org/10.1038/sj.sc.3102172 PMID:18209742 71. Snoek GJ et al. Survey of the needs of patients with spinal cord injury: impact and priority for improvement in hand function in tetraplegics. Spinal Cord, 2004, 42:526-532. doi: http://dx.doi.org/ 10.1038/sj.sc.3101638 PMID:15224087 72. Chang SM et al. Urologic status of 74 spinal cord injury patients from the 1976 Tangshan earthquake, and managed for over 20 years using the Crede maneuver. Spinal Cord, 2000, 38:552-554. doi: http://dx.doi.org/10.1038/sj.sc.3101060 PMID:11035477 73. Weld KJ, Dmochowski RR. Effect of bladder management on urological complications in spinal cord injured patients. The Journal of Urology , 2000, 163:768-772. doi: http://dx.doi.org/10.1016/ S0022-5347(05)67800-7 PMID:10687973
4. 보건 의료와 재활의 요구 109
74. Wyndaele JJ. Intermittent catheterization: which is the optimal technique? Spinal Cord, 2002, 40:432-437. doi: http://dx.doi.org/10.1038/sj.sc.3101312 PMID:12185603 75. Correa GI, Rotter KP. Clinical evaluation and management of neurogenic bowel after spinal cord injury. Spinal Cord, 2000, 38:301-308. doi: http://dx.doi.org/10.1038/sj.sc.3100851 PMID:10822403 76. Consortium for Spinal Cord Medicine. Neurogenic bowel management in adults with spinal cord injury. Washington, DC, Paralyzed Veterans of America, 1998. 77. Krassioukov A et al. Neurogenic bowel following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–41 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 78. Yasmeen R et al. How do patients with chronic spinal injury in Pakistan manage their bowels? A cross-sectional survey of 50 patients. Spinal Cord, 2010, 48:872-875. doi: http://dx.doi.org/ 10.1038/sc.2010.46 PMID:20440300 79. Ayaş S et al. The effect of abdominal massage on bowel function in patients with spinal cord injury.
American Journal of Physical Medicine & Rehabilitation, 2006, 85:951-955. doi: http://dx.doi.org/10.1097/ 01.phm.0000247649.00219.c0 PMID:17117000 80. Branagan G et al. Effect of stoma formation on bowel care and quality of life in patients with spinal cord injury. Spinal Cord, 2003, 41:680-683. doi: http://dx.doi.org/10.1038/sj.sc.3101529 PMID:14639447 81. Coggrave M et al. Progressive protocol in the bowel management of spinal cord injuries. British Journal of Nursing, 2006, 15:1108-1113. PMID:17170659 82. Consortium for Spinal Cord Medicine. Sexuality and reproductive health in adults with spinal cord injury: a clinical practice guideline for health-care professionals. Washington, DC, Paralyzed Veterans of America, 2010. 83. Kreuter M, Siosteen A, Biering-Sorensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. Journal of Rehabilitation Medicine, 2008, 40:61-69. doi: http://dx.doi.org/ 10.2340/16501977-0128 PMID:18176739 84. Kreuter M et al. Women’s sexual functioning and sex life after spinal cord injury. Spinal Cord, 2011, 49:154-160. doi: http://dx.doi.org/10.1038/sc.2010.51 PMID:20458327 85. Sipski ML, Richards JS. Spinal cord injury rehabilitation. American Journal of Physical Medicine &
Rehabilitation, 2006, 85:310-342. doi: http://dx.doi.org/10.1097/01.phm.0000202105.87011.bf PMID: 16554684 86. Burns AS, Ditunno J. Establishing prognosis and maximizing functional outcomes after spinal cord injury. Spine, 2001, 26 Suppl:S137-S145. doi: http://dx.doi.org/10.1097/00007632-200112151-00023 PMID:11805621 87. Kirshblum S et al. Rehabilitation of Spinal Cord Injury. In: Campagnolo D et al., eds. Spinal Cord Medicine. 2nd ed. Philadelphia, PA, Lippincott Williams & Wilkins, 2011: 312-313. 88. Beekhuizen KS, Field-Fote EC. Sensory stimulation augments the effects of massed practice training in persons with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2008, 89:602-608. doi: http://dx.doi.org/10.1016/j.apmr.2007.11.021 PMID:18373988
110 척수 손상의 국제적 관점
89. Connolly SJ et al. Upper limb rehabilitation following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 90. Kloosterman MGM, Snoek GJ, Jannink NJA. Systematic review of the effects of exercise therapy on the upper extremity of patients with spinal-cord injury. Spinal Cord, 2009, 47:196-203. doi: http://dx.doi.org/10.1038/sc.2008.113 PMID:18825160 91. Lam T et al. Lower limb rehabilitation following spinal cord injury. In: Eng JJ et al., eds. Spinal cord
injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–47 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 92. Mehrholz J et al. Locomotor training for walking after spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (2):CD006676. PMID:18425962 93. Kreutz D. Standing frames and standing wheelchairs: implications for standing. Topics in Spinal Cord Injury Rehabilitation, 2000, 5:24-28. doi: http://dx.doi.org/10.1310/P8YC-WGEH-C1VP-2VC1 94. Shields RK, Dudley-Javoroski S. Musculoskeletal plasticity after acute spinal cord injury: effects of long-term neuromuscular electrical stimulation training. Journal of Neurophysiology, 2006, 95:2380-2390. doi: http://dx.doi.org/10.1152/jn.01181.2005 PMID:16407424 95. Wolfe DL et al. Physical activity and SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 4. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2012 (http://www. scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 96. Borg J, Lindström A, Larsson S. Assistive technology in developing countries: a review from the perspective of the Convention on the Rights of Persons with Disabilities. Prosthetics and Orthotics International, 2011, 35:20-9. doi: http://dx.doi.org/10.1177/0309364610389351 PMID:21515886 97. Bryden AM et al. Perceived outcomes and utilization of upper extremity surgical reconstruction in individuals with tetraplegia at model spinal cord injury systems. Spinal Cord, 2004, 42:169-176. doi: http://dx.doi.org/10.1038/sj.sc.3101579 PMID:14758349 98. Wuolle KS et al. Satisfaction with upper-extremity in individuals with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2003, 84:1145-1149. doi: http://dx.doi.org/10.1016/S0003-9993(03)00292-2 PMID:12917852 99. Snoek GJ et al. Decision for reconstructive interventions of the upper limb in individuals with tetraplegia: the effect of treatment characteristics. Spinal Cord, 2008, 46:228-233. doi: http://dx.doi.org/ 10.1038/sj.sc.3102110 PMID:17680013 100. Bombardier CH et al. Do preinjury alcohol problems predict poorer rehabilitation progress in persons with spinal cord injury? Archives of Physical Medicine and Rehabilitation, 2004, 85:1488-1492. doi: http://dx.doi.org/10.1016/j.apmr.2003.10.010 PMID:15375822 101. Fann JR et al. Depression after spinal cord injury: comorbidities, mental health service use, and adequacy of treatment. Archives of Physical Medicine and Rehabilitation, 2011, 92:352-360. doi: http://dx.doi.org/10.1016/j.apmr.2010.05.016 PMID:21255766 102. Hastings J et al. The differences in self-esteem, function, and participation between adults with low cervical motor tetraplegia who use power or manual wheelchairs. Archives of Physical
4. 보건 의료와 재활의 요구 111
Medicine and Rehabilitation, 2011, 92:1785-1788. doi: http://dx.doi.org/10.1016/j.apmr.2011.03.023 PMID:21762872 103. Krause JS. Depression after spinal cord injury: relation to gender, ethnicity, ageing and socioeconomic indicators. Archives of Physical Medicine and Rehabilitation, 2000, 81:1099-1109. doi: http://dx.doi.org/10.1053/apmr.2000.7167 PMID:10943762 104. Kennedy P, Evans M, Sandhu N. Psychological adjustment to spinal cord injury: the contribution of coping, hope and cognitive appraisals. Psychology Health and Medicine, 2009, 14:17-33. doi: http://dx.doi.org/10.1080/13548500802001801 PMID:19085309 105. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http://dx.doi.org/10.1038/sc.2011.182 106. Consortium for Spinal Cord Medicine. Depression following spinal cord injury: a clinical practice guideline for primary care physicians. Paralyzed Veterans of America, 1998. 107. Kennedy P et al. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injury. The British Journal of Clinical Psychology, 2003, 42:41-52. doi: http://dx.doi.org/ 10.1348/014466503762842002 PMID:12675978 108. Boschen KA, Tonack M, Gargaro J. Long-term adjustment and community reintegration following spinal cord injury. International Journal of Rehabilitation Research, 2003, 26:157-164. doi: http://dx.doi.org/10.1097/00004356-200309000-00001 PMID:14501566 109. Kroll T, ed. Focus on disability: trends in research and application. Hauppauge, NY, Nova Science Publishers, 2008. 110. Ljungberg I et al. Using peer mentoring for people with spinal cord injury to enhance self-efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 2011, 20:351-358. doi: http://dx.doi.org/10.1111/j.1365-2702.2010.03432.x PMID:21219518 111. Sherman JE, DeVinney DJ, Sperling KB. Social support and adjustment after spinal cord injury: influence of past peermentoring experiences and current live-in partner. Rehabilitation Psychology, 2004, 49:140-149. doi: http://dx.doi.org/10.1037/0090-5550.49.2.140 112. Tate DG, Boninger ML, Jackson AB. Future directions for spinal cord injury research: recent developments and model systems contributions. Archives of Physical Medicine and Rehabilitation, 2011, 92:509-515. doi: http://dx.doi.org/10.1016/j.apmr.2010.07.243 PMID:21353833 113. Bergström AL, Samuelsson K. Evaluation of manual wheelchairs by individuals with spinal cord injuries. Disability and Rehabilitation. Assistive Technology, 2006, 1:175-182. doi: http://dx.doi.org/ 10.1080/17483100600573230 PMID:19260185 114. Sisto SA, Forrest GF, Faghri PD. Technology for mobility and quality of life in spinal cord injury: analyzing a series of options available. IEEE Engineering in Medicine and Biology Magazine, 2008, 27:56-68. doi: http://dx.doi.org/10.1109/EMB.2007.907398 PMID:18463021 115. Biering-Sorensen F, Hansen RB, Biering-Sorensen J. Mobility aids and transport possibilities 10–45 years after spinal cord injury. Spinal Cord, 2004, 42:699-706. doi: http://dx.doi.org/10.1038/ sj.sc.3101649 PMID:15289807
112 척수 손상의 국제적 관점
116. Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 2001, 15:600-606. doi: http://dx.doi.org/10.1191/0269215501cr453oa PMID:11777090 117. Hedrick B et al. Employment issues and assistive technology use for persons with spinal cord injury. Journal of Rehabilitation Research and Development, 2006, 43:185-198. doi: http://dx.doi.org/10.1682/JRRD.2005.03.0062 PMID:16847785 118. Phillips B, Zhao H. Predictors of assistive technology abandonment. Assistive Technology, 1993, 5:36-45. doi: http://dx.doi.org/10.1080/10400435.1993.10132205 PMID:10171664 119. Dieruf K, Ewer L, Boninger D. The natural-fit handrim: factors related to improvement in symptoms and function in wheelchair users. The Journal of Spinal Cord Medicine, 2008, 31:578-585. PMID:19086716 120. Ayyappa MS, Downs K. Spinal orthoses in spinal cord medicine: principles and practice. New York, Demos Medical Publishing Inc., 2003. 121. Yamane A. Lower limb orthoses and rehabilitation. New York, NY, Demos Medical Publishing Inc, 2003. 122. Scherer MJ, Cushman LA. Measuring subjective quality of life following spinal cord injury: a validation study of the assistive technology device predisposition assessment. Disability and Rehabilitation, 2001, 23:387-393. doi: http://dx.doi.org/10.1080/09638280010006665 PMID:11394589 123. Chen YL et al. A head orientated wheelchair for people with disabilities. Disability and
Rehabilitation, 2003, 25:249-253. doi: http://dx.doi.org/10.1080/0963828021000024979 PMID:12623613 124. Regan MA et al. A systematic review of the therapeutic interventions for pressure ulcers after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:213-231. doi: http://dx.doi.org/10.1016/j.apmr.2008.08.212 PMID:19236976 125. Atkins MA, Clark D, Waters RL, eds. Upper limb orthoses in spinal cord medicine: principles and
practice. New York, Demos Medical Publishing Inc., 2003. 126. Atkins MS et al. Mobile arm supports: evidence-based benefits and criteria for use. The Journal
of Spinal Cord Medicine, 2008, 31:388-393. PMID:18959356 127. Norweg A et al. Patterns, predictors, and associated benefits of driving a modified vehicle after spinal cord injury: findings from the national spinal cord injury model systems. Archives of Physical Medicine and Rehabilitation, 2011, 92:477-483. doi: http://dx.doi.org/10.1016/j.apmr.2010.07.234 PMID:21353830 128. Bodine C, Buning M. The role of assistive technology in rehabilitation. In: Braddom R, ed. Physical medicine & rehabilitation, 3rd ed. Cambridge, MA, Elsevier, 2005. 129. Goodman N, Jette AM. Computer and Internet use by persons after traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2008, 89:1492-1498. doi: http://dx.doi.org/ 10.1016/j.apmr.2007.12.038 PMID:18674985 130. Sears A, Young M. The human-computer interaction handbook: fundamentals, evolving technologies
and emerging applications. Hillsdale, NJ, L Erlbaum Associates Inc, 2002.
4. 보건 의료와 재활의 요구 113
131. Craig A et al. The effectiveness of a hands-free environmental control system for the profoundly disabled. Archives of Physical Medicine and Rehabilitation, 2002, 83:1455-1458. doi: http://dx.doi.org/ 10.1053/apmr.2002.34624 PMID:12370885 132. Allen S, Resnik L, Roy J. Promoting independence for wheelchair users: the role of home accommodations. The Gerontologist, 2006, 46:115-123. doi: http://dx.doi.org/10.1093/geront/46.1.115 PMID:16452291 133. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disability and Rehabilitation, 2003, 25:487-490. doi: http://dx.doi.org/ 10.1080/0963828031000071723 PMID:12745944 134. Driscoll MP, Rodger SA, De Jonge DM. Factors that prevent or assist the integration of assistive technology into the workplace for people with spinal cord injuries: perspectives of the users and their employers and co-workers. Journal of Vocational Rehabilitation, 2001, 16:53-66. 135. Scherer MJ. Living in the state of stuck. How technology impacts the lives of people with disabilities, 3rd edition. Cambridge, MA, Brookline Books, 2000. 136. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. 137. Rigby P et al. Impact of electronic aids to daily living on the lives of persons with cervical spinal cord injuries. Assistive Technology, 2005, 17:89-97. doi: http://dx.doi.org/10.1080/10400435.2005. 10132099 PMID:16392713 138. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/oti.228 PMID:17624872 139. Glumac LK et al. Guatemalan caregivers’ perceptions of receiving and using wheelchairs donated for their children. Pediatric Physical Therapy, 2009, 21:167-175. doi: http://dx.doi.org/10.1097/PEP. 0b013e3181a34a2b PMID:19440126 140. Rushton PW et al. Satisfaction with participation using a manual wheelchair among individuals with spinal cord injury. Spinal Cord, 2010, 48:691-696. doi: http://dx.doi.org/10.1038/sc.2009.197 PMID:20125106 141. Judge S, Floyd K, Jeffs T. Using an assistive technology toolkit to promote inclusion. Early
Childhood Education Journal, 2008, 36:121-126. doi: http://dx.doi.org/10.1007/s10643-008-0257-0 142. Ameratunga S et al. Rehabilitation of the injured child. Bulletin of the World Health Organization, 2009, 87:327. doi: http://dx.doi.org/10.2471/BLT.09.057067 PMID:19551242 143. Ripat J. Function and impact of electronic aids to daily living for experienced users. Technology
and Disability, 2006, 18:79-87. 144. Rigby P, Ryan SE, Campbell KA. Electronic aids to daily living and quality of life for persons with tetraplegia. Disability and Rehabilitation. Assistive Technology, 2011, 6:260-267. doi: http://dx. doi.org/10.3109/17483107.2010.522678 PMID:20883120 145. Agree EM et al. Reconsidering substitution in long-term care: when does assistive technology take
114 척수 손상의 국제적 관점
the place of personal care? Journal of Gerontology: Social Sciences, 2005, 60:S272-S280. doi: http://dx.doi.org/10.1093/geronb/60.5.S272 PMID:16131628 146. Field MJ, Jette AM. The future of disability in America. Washington, DC, The National Academies Press, 2007. 147. Schraner I et al. Using the ICF in economic analyses of assistive technology systems: methodological implications of a user standpoint. Disability and Rehabilitation, 2008, 30:916-926. PMID:18484387 148. Yeo JD et al. Mortality following spinal cord injury. Spinal Cord, 1998, 36:329-336. doi: http://dx.doi.org/10.1038/sj.sc.3100628 PMID:9601112 149. DeVivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and causes of death among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1411-1419. doi: http://dx.doi.org/10.1016/S0003-9993(99)90252-6 PMID:10569435 150. Krause JS et al. Health status, community integration, and economic risk factors for mortality after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1764-1773. doi: http://dx.doi.org/10.1016/j.apmr.2004.06.062 PMID:15520971 151. Chiodo AE et al. Spinal cord injury medicine: 5: long-term medical issues and health maintenance. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl. 1:S76-S83. doi: http://dx.doi.org/ 10.1016/j.apmr.2006.12.015 PMID:17321853 152. Fernhall B et al. Health implications of physical activity in individuals with spinal cord injury: a literature review. Journal of Health and Human Services Administration, 2008,468-502. PMID:18236700 153. Krause JS, Saunders LL. Health, secondary conditions, and life expectancy after spinal cord injury.
Archives of Physical Medicine and Rehabilitation, 2011, 92:1770-1775. doi: http://dx.doi.org/ 10.1016/j.apmr.2011.05.024 PMID:22032212 154. McColl MA et al. Primary care for people with SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–24 (http://www.scireproject.com/rehabilitationevidence, accessed 25 April 2012). 155. Soden RJ et al. Causes of death after spinal cord injury. Spinal Cord, 2000, 38:604-610. doi: http://dx.doi.org/10.1038/sj.sc.3101080 PMID:11093321 156. Bauman WA, Spungen AM. Coronary heart disease in individuals with spinal cord injury: assessment of risk factors. Spinal Cord, 2008, 46:466-476. doi: http://dx.doi.org/10.1038/sj.sc. 3102161 PMID:18180789 157. Engel S, Leong G. Health maintenance for adults with spinal cord injuries: targeting health
professionals. Sydney, NSW State Spinal Cord Injury Service, 2008. 158. Myers J, Lee M, Kiratli J. Cardiovascular disease in spinal cord injury: an overview of prevalance, risk, evaluation and management. American Journal of Physical Medicine & Rehabilitation, 2007, 86:142-152. doi: http://dx.doi.org/10.1097/PHM.0b013e31802f0247 PMID:17251696 159. Warburton DER et al. Cardiovascular health and exercise following spinal cord injury. In: Eng JJ
4. 보건 의료와 재활의 요구 115
et al., eds. Spinal cord injury rehabilitation evidence, Version 3. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010:1–38 (http://www.scireproject.com/rehabilitation-evidence, accessed 25 April 2012). 160. Wahman K et al. Cardiovascular disease risk factors in persons with paraplegia: the Stockholm spinal cord injury study. Journal of Rehabilitation Medicine, 2010, 42:272-278. doi: http://dx.doi.org/10.2340/16501977-0510 PMID:20419873 161. Cowan RE, Nash M. Cardiovascular disease, SCI and exercise: unique risks and focused countermeasures. Disability and Rehabilitation, 2010, 32:2228-2236. doi: http://dx.doi.org/ 10.3109/09638288.2010.491579 PMID:20524925 162. Johnston MV et al. Preventive services and health behaviors among people with spinal cord injury.
The Journal of Spinal Cord Medicine, 2005, 28:43-54. PMID:15832903 163. Krause JS et al. Risk of mortality after spinal cord injury: an 8-year prospective study. Archives of Physical Medicine and Rehabilitation, 2009, 90:1708-1715. doi: http://dx.doi.org/10.1016/j.apmr. 2009.04.020 PMID:19801060 164. Ditor DS. Maintenance of exercise participation in individuals with spinal cord injury: effects on quality of life, stress and pain. Spinal Cord, 2003, 41:446-450. doi: http://dx.doi.org/10.1038/ sj.sc.3101487 PMID:12883542 165. Fekete C, Rauch A. Correlates and determinants of physical activity in persons with spinal cord injury: a review using the International Classification of Functioning, Disability and Health as reference framework. Disability and Health Journal, 2012, 5:140-150. doi: http://dx.doi.org/10.1016/ j.dhjo.2012.04.003 PMID:22726854
116 척수 손상의 국제적 관점
Health systems strengthening
5. 의료 시스템 강화
“내가 손상을 당했을 때는 내가 사는 지역의 큰 병원도 폐허가 되어 있을 때였다. 이로 인해, 수술실이 확보되지 않아서 수술을 할 수 없었다. 가족들은 병원에 요청해 다른 지역의 병원으로 이송하고자 모든 노력을 기울였으나 그 노력은 물거품이 되었다. 당시 정형외과 책임자였던 이의 너무나 거친 말로 인해 어려움을 이겨내려 했던 의지가 꺾이고 말았다. 어느 날 그 의사는 내 병실에 들어와서 어머니와 가족들을 무례하게 불러대며, 내가 남은 생을 식물인간 상태로 살 것이고, 다시는 앉거나 걸을 수 없을 것이라고 했다.” (안젤라, 우간다)
“내 장애에 대한 상세한 설명 덕분에 의사에 대해 긍정적인 경험을 할 수 있었다. 의사의 설명 덕에 내가 당한 손상에 대해서 잘 이해할 수 있었고, 이를 대처하는 데 많은 도움이 되었다. 또한 의사가 이전과 다름없이 행복한 삶을 살 수 있도록 격려해 준 덕분에 나는 장애 후에도 긍정적으로 살 수 있게 되었다. 나는 장기간에 걸친 건강 관리가 특히 어렵다는 점을 알게 되었다. 왜냐하면, 척수손상의 경우, 장, 방광, 팔과 다리 움직임 같은 많은 합병증을 관리해야 하기 때문이다. 나의 건강을 유지하는 것은 매우 어려운 일일 것이다. (술리에만, 사우디아라비아)
“내가 척수 센터에서 퇴원한 이후 부딪혔던 가장 큰 문제는 척수손상 환자의 구체적인 요구와 문제에 친숙한 의사를 찾은 일이었다. 경련 때문에, 이동, 트랜스퍼, 그리고 의자에 앉아 검사받는 것도 너무 어려웠다. 경련이 아침에 좀 덜한 경향이 있어서, 주로 아침 예약을 요청하곤 했다. 그러나 이런 상황을 고려해 주는 의사는 별로 없었다. 의사와 만나기 전까지는 다리가 춤을 추는 것 같았다. 또 다른 문제는 자율 신경 이상 반사증(AD)이었다. 재활 센터 외부의 의사들은 거의 90%가 이런 증상에 대해서 잘 알지 못했다. 그래서 거의 매번 나는 레그백(소변 주머니)이 꽉 차거나 자세가 불편할 경우 자율 신경 이상 반사증이 올 가능성에 대해서 설명해야만 했다. 심지어 내가 이것을 언급한 뒤에도, 의사들이 레그백을 정기적으로 확인하는 것을 잊어서 자율 신경 이상 반사증에 시달리곤 했다. 나는 정기적으로 자율 신경 이상 반사증 징후를 확인하기 위해 동생을 함께 데리고 다니곤 한다.” (알렉시스, 인도)
“2010년 아이티 지진 때, 나는 무너지는 벽에 눌려 큰 부상을 당했다. 내 부상은 경수 6번(C6) 사지 마비로 진단되었다. 지진 발생 5개월 후 나는 재활을 위해 병원(Haiti Hospital Appeal)에 재입원했다. 병원에서 처음으로 휠체어를 받았다. 그러나 이 휠체어는 내 몸집이나(나는 키가 매우 크다.) 척수손상 부위와도 맞지가 않았다. 아이티의 보건 의료 시스템은 휠체어 공급에 신경을 쓰지 않기 때문에 개인이 노력해서 자비로 마련해야 한다. 척수손상 발생 1년이 지난 후, 나는 미국 단체가 제공한 새로운 수동 휠체어를 받았다.” (사무엘, 아이티)
5 의료 시스템 강화 4장에서는 척수장애인의 보건 의료, 재활, 보조 기기 기술에 대한 요구를 살펴보았으며, 이 장에서는 의료 시스템이 이러한 요구에 어떻게 대응해야 하는지를 알아볼 것이다. 현재 대부분의 국가가 척수 장애인을 대하는 의료 시스템이 충분하지 못한 상황이다. 그 결과 사망률이 불필요하게 높은 편이다. 올바른 시설과 기술에 대한 투자를 통해 척수장애인은 생존, 번영할 수 있고 인권도 누릴 수 있을 것이다. WHO는 보건 의료 시스템 운영을 개선하기 위한 방안으로 6개의 요소, 즉 리더십과 거버넌스, 서비스 전달, 인적 자원, 보건 의료 기술, 정보 시스템, 그리고 재정의 ‘블록 구축’을 고려한 ‘시스템 강화’ 방식을 촉구하고 있다(1). 이 장에서는 이 6가지 요소를 개별적으로 살펴보는 한편, 이러한 요소 간의 상호 작용에 대해서도 확인 할 것이고, 나아가 척수장애인이 자신의 요구에 접근할 수 있도록 해 주는 교육, 고용, 사회 복지와 같은 다른 영역과의 협력도 확인해 볼 것이다. 척수손상은 의료 시스템의 거의 모든 영역과 관련이 있다. 따라서, 척수장애인의 요구를 효과적으로 충족할 수 있는 조치는 장애인뿐만 아니라 의료 시스템을 이용하는 다른 비장애인들에게도 잠재적인 혜택을 가져다줄 수 있다. 이 장에서는 척수장애인의 요구 충족을 위해 자국의 의료 시스템 역량 강화 의지를 가진 국가에 일반적인 가이드라인을 제시하는 일련의 제안을 할 것이다.
미충족 요구
▶ 보건 의료 세계 장애 보고서(World report on disability)에 따르면 장애인들이 비장애인에 비해 입원 및 통원 치료를 더 많이 받고 있으며, 또한 장애인이 비장애인에 비해 치료를 잘 받지 못하는 것으로 보고 되었다(2). 예를 들어, 장애인은 전체 국민보다 유방 조형술, 자궁 경부암 검사, 금연 클리닉과 같은 검사와 예방 서비스를 훨씬 적게 받는 것으로 밝혀졌다(3, 4). 보건 의료 서비스의 이용과 척수장애인의 미충족 요구에 관련된 구체적인 데이터는 구하기가 쉽지 않은데, 특히 저소득 국가에서 더욱 그러하다.
5. 의료 시스템 강화 119
그러나 세계 장애 보고서의 내용을 뒷받침하는 이용 가능한 근거들에 따르면, 일단 초기 재활 기간이 끝나게 되면, 척수장애인은 종종 추가 서비스 (5)뿐만 아니라 일차 치료 (6)에 있어서도 상당한 미충족 요구를 지닌 것으로 나타났다 . 예를 들어 , 캐나다에서 진행된 코호트 연구에서는 척수 장애인이 손상 후 6년의 추적 관리 기간 동안에는 비장애인보다 보건 의료 시스템(높은 수준의 재입원율을 포함)에 접근할 가능성이 더 큰 것으로 밝혀졌다(7). 손상 이후 9년이 지난 척수장애인을 포함시킨 덴마크 연구에서는, 척수장애인이 대조군 그룹보다 3배나 높은 입원율을 기록해 1년에 병원에 0.5회 입원하는 것으로 나타났고, 같은 척수장애인들이 일반 의사와 물리 치료사의 처치를 받는 경우가 대조군에 비해 6배 높은 것으로 나타났다(8). 척수장애인의 미충족 일차 치료 요구는 건강 증진, 예방 서비스, 의료적 치료 등이다(9). 특히, 심리학적 정보, 성적 정보, 재생산 건강과 관련된 정보의 요구와 우려가 제대로 다루어지지 않았다 (9). 네덜란드의 연구에 따르면, 가정에 거주하는 척수장애인은 정보와 심리 치료를 포함한 치료에 있어서 상당한 미충족 요구가 있는 것으로 밝혀졌다(10). 네덜란드 연구의 참여자들은 또한 척수 손상과 관련된 이차 합병증은 상당 부분 예방 가능한 것으로 여기고 있다. 예를 들어, 50%의 욕창과 25%의 방광, 장, 성적 문제를 예방 가능한 것으로 인식하고 있으며, 특히 양질의 치료 및 정보 제공, 당사자 자신의 건강과 행동에 대한 자기 관리를 통해 예방할 수 있다고 여기고 있다(10).
▶ 재활 또한 보조 기기 기술을 포함해 재활 서비스에 대한 미충족 요구의 세계적인 데이터가 매우 제한 적이다(2). 척수장애인을 포함해 장애를 가지고 살아가는 사람들을 대상으로 말라위, 모잠비크, 나미비아, 잠비아, 짐바브웨에서 진행된 국가 연구에서는 의료 재활과 보조 기기 제공 서비스에 격차가 있는 것으로 나타났다(11-15). 요구 및 미충족 요구에 대한 데이터가 없는 상황 속에서 , 재활에 대한 소비자의 견해와 경험을 조사한 연구는 서비스가 척수장애인의 요구에 부합했는지 여부를 확인하는 정보 제공에 도움을 줄 수 있다. 척수장애인은 지역 사회 삶으로의 전환 과정에 관한 재활이 적절하게 준비되어 있지 않았던 경험을 토로했으며, 또한 세팅된 상황에서 배웠던 재활의 기술과 ‘현실 세상’에서 필요한 기술과의 차이가 있다고 말했다(16, 17). 이 내용을 언급했던 네덜란드 보고서에 따르면, 72%의 참여자가 재활 센터의 컨설팅, 재활 센터의 재평가, 전화 상담, 가정 방문을 포함한 추가적인 관리가 필요 하다는 의견을 제시했다(10). 보조 기기 기술은 보조 기기를 필요로 하는 장애인 중 약 5-15%만이 이런 내용에 접근할 수 있는 저·중소득 국가에서 중요한 문제이다(18). 이 내용을 언급했던 남부 아프리카에서 진행된 연구에 따르면, 보조 기기 서비스를 요청했던 장애인 중 단지 17-37%만이 실질적으로 이런 서비스를 받을
120 척수 손상의 국제적 관점
수 있었으며, 여성보다 남성이 보조 기기를 더 많이 사용하는 것으로(말라위: 남성 25.3%, 여성 14.1%; 잠비아: 남성 15.7%, 여성 11.9%) 보고되었다. 그리고 농어촌 지역보다 도시 지역의 보조 기기 사용 비율이 높은 것으로 나타났다. 또한 고소득 국가에 거주하는 사람들도 보조 기기 기술에 대한 미충족 요구를 가지고 있을 수 있다. 척수손상, 다발성 경화증, 뇌성 마비 장애인에 대해 미국에서 진행된 국가 조사에 따르면, 조사에 참여한 절반 이상(56.5%)이 이전 연도에 보조 기기 기술 지원이 필요하다고 응답했지만, 그중 28.4%는 자신들이 필요할 때마다 지원을 받지 못했다고 했다(19). 네덜란드의 척수손상 연구에서는, 응답자의 과반수(56.7%)가 휠체어를 구하는 데 문제가 있었다고 밝혔으며 , 이 때문에 휠체어를 받기 위한 대기 시간이 길어져 재활 센터에서 퇴원이 종종 지연 됐다고 말했다. 게다가 수동 휠체어를 사용하는 35.9%의 장애인과 전동 휠체어를 사용하는 47.5%의 장애인이 자신들의 휠체어에 대한 불만을 나타냈다 . 또한 같은 연구에서 , 높은 비율의 응답자 (78.3%)가 자신의 집이 적절하게 개조된 것에 동의를 표했으나, 유의미한 비율의 응답자(38.1%)는 자신들이 요청한 개조 변경 사항이 모두 반영되지 않았다고 밝혔다(20).
의료 시스템 강화
▶ 리더십과 거버넌스 장애인 권리 협약(CRPD)은 “모든 장애인은 장애를 이유로 한 차별 없이, 달성할 수 있는 최고 수준의 건강을 향유할 권리가 있다.”라고 명시하고 있으며, 이에 따라 당사국은 장애인 권리 협약 25조와 26조에 기술된 재활을 포함한 건강 서비스 접근을 보장하기 위한 적절한 조치를 취해야 한다(21). 장애인 권리 협약은 또한 장애인의 보조 기기 기술 접근을 보장하기 위한 당사국의 책임을 구체적으로 언급하고 있다. 이러한 의무 사항에 부합하기 위해 국가는 법, 정책, 전략이 필요하다. 그러나 많은 저·중소득 국가 에서는 이러한 내용들이 이행되지 않고 있으며, 보조 기기 기술을 포함한 보건 의료와 재활 서비스의 제공과 접근이 보장되지 않고 있다(2). 예를 들어, 유엔의 ‘장애인의 기회 평등에 관한 표준 규칙 (Standard Rules on the Equalization of Opportunities for Persons with Disabilities)’ 글로벌 이행 보고서는 114개의 응답 국가 중 50%가 재활 관련 법이 없고, 42%는 재활 정책을 마련하지 못했으며, 48%는 구체적으로 보조 기기 제공과 관련된 정책을 마련하지 못했으며, 40%는 재활 5. 의료 시스템 강화 121
프로그램을 수립하지 못한 사실을 강조하고 있다(22). 정부의 법과 정책이 존재하는 경우, 정부는 종종 제공되는 치료의 내용과 범위를 제한해서 척수장애인 당사자가 필요한 치료에 접근하는 것을 어렵게 만들고 있다 . 장애의 상충되는 정의 , 지원에 대한 적격 기준 , 복잡한 과정 때문에 척수 장애인이 필요로 하는 자원의 획득 및 요청이 어려워지고 있다(23). 적절한 법, 정책, 전략이 없다면, 척수장애인의 보건 의료와 재활 서비스에 대한 적절한 접근 보장이 어려워질 것이다. 장애에 대한 구체적인 정책(척수장애인 포함)이 반드시 마련되어야 할 뿐만 아니라, 척수장애인의 건강과 재활에 대한 요구가 주택, 교통, 교육, 오락과 레저, 고용, 사회 복지를 포함한 정부의 다양한 영역에 걸쳐 수용되도록 보장해야 한다. 많은 외상성 척수손상자가 발생할 수 있고 이미 취약한 시스템을 붕괴시킬 수 있는 지진과 같은 인도적 재난을 대비한 계획이 반드시 수립 되어야 한다(박스 5.1 참조).
박스 5.1 중국 쓰촨성 지진 이후 재활 서비스 조직 2008년 5월, 엄청난 지진이 중국 쓰촨성 지역을 강타했고, 이로 인해 약 86,000명이 사망하거나 실종됐으며 많은 사람들이 부상을 입고 이재민이 되었다. 그리고 집중적 의료 치료가 필요한 척수손상 입원 환자가 약 200명 발생했다. 지진 발생 이후, 중국 재활 의학 협회(CARM)는 지방 정부의 보건 관계자, 아동 보호 재단(국내 NGO)과 협력해 척수 장애인과 기타 외상성 장애 손상을 당한 사람들의 재활 요구에 대응하기 위해 “NHV” 접근 방법을 진행했다. 이 방식은 NGO의 자금(N), 지방 보건 당국의 자원(H), 전문 재활 자원봉사단의 의지(V)가 결합되어 시설 중심 재활(IBR)에서 지역 사회 중심 재활(CBR)로의 지속적이며 포괄적인 서비스를 제공하기 위한 것이었다. 중국 정부의 장애인 보호법 2008 (24)과 장애인 권리 협약 (21)이 NHV 모델의 법률적 기반을 제공했다. 쓰촨성의 성도인 청두와 주변 지역의 의료 시스템 인프라가 심각하게 파괴되고 지진 이후 외상성 척수손상과 기타 장애 손상자 숫자가 엄청나게 증가한 결과로, 의료적으로 안정된 상태의 환자들은 중국 타 지역의 병원으로 대량 이송 되는 상황이 발생했다(25). 몇 개월 이내에 인프라가 상당 부분 회복되어 대부분의 사람들은 집과 임시 캠프로 모두 돌아오거나, 혹은 지속적인 의료 치료를 위해 청두시의 병원으로 이송되었다. 지역 사회로 돌아온 사람들의 재활 요구에 부응하기 위해, 중국 재활 의학 협회는 지방 정부의 보건 관계자, 아동 보호 재단과 협력해 2단계 골절 수술과 골절 환자, 척수손상 환자, 외상성 뇌손상 환자. 신경 손상 환자의 재활을 위한 프로젝트를 함께 진행했다. 재활 영역에서, 시설 중심 재활의 혜택을 받을 수 있는 사람들을 확인하기 위해 핸디캡 인터내셔널과 아동 보호 재단의 지원으로 요구 분석 평가가 진행되었다. 시범 사업 이후에, 시설 중심 재활이 몐주 시 보건 당국과 병원에서 진행되었다. 퇴원 이후에는 지역 사회 중심 재활로 변화하여 특히 건강 증진, 예방, 치료, 재활, 보조 기기 등 건강 요소에 대한 내용이 강조되었다. 고용 서비스, 활동 보조인, 동료 그룹 지원을 통한 삶, 사회적 역량 강화의 요소를 포함한 지역 사회 중심 재활의 다른 구성 요소들 또한 다루어졌다. 지진의 결과 영구적인 손상을 당한 사람들은 병원 내원 교통비와 같은 기본 생활에 필요한 비용 제공과 더불어 ‘무료’로 시설 중심 재활을 지원받았다. 전반적으로 NHV의 비용 효율적 모델은 거리가 먼 성도의 병원이 아닌 가까운 도시의 병원에서 시설 중심 재활을 제공함으로써 촉진되었다. 척수손상 재활을 위한 NHV의 효율성은, NHV 방법을 통해 치료를 받은 51명의 지진 척수손상 피해자를 대상으로 일상생활 활동을 평가한 바델 지수(Barthel Index)에서 평균 30점이 상승한 리(26세)의 사례에서 명확하게 잘 나타나고 있다. 의료적 합병증도 대부분의 환자층에서 효과적으로 관리가 되었다. 게다가 NHV 모델 하에서 지역 사회로 복귀한 26명의 척수손상 대상자 중, 후(27세) 씨는 자체 평가 삶의 질, 전반적인 건강, 사회적 관계의 만족감뿐만 아니라 신체 적인 자립과 이동성에서도 우수한 내용을 보여 주었다.
122 척수 손상의 국제적 관점
국가는 척수장애인의 요구에 부합하는 의료 시스템 역량을 구축하기 위해 점진적 접근법을 채택할 필요가 있다. 척수장애인을 위한 보건 의료, 재활의 요구와 혜택을 인지하는 것이 중요한 첫 단계이다. 이 과정에서 척수장애인이 직접적으로 영향을 받는 정책 결정의 경우 계획 단계에서 이들이 참여할 수 있도록 하는 필수적이며, 척수장애인의 견해, 지식, 경험과 같은 매우 귀중한 식견을 제공할 수 있다. 정부가 정책과 전략 계획의 지원과 이행을 보장하는 책임을 지는 한편, 전문적인 척수 센터, 병원, 전문가 협회, 대학, 국내외 개발 기관을 포함한 광범위한 이행 당사자들은 파트너십과 협력을 통해, 또한 재정과 기술 지원을 통해 중요한 역할을 수행할 수 있다. 한정적 자원을 가지고 있는 나라는 관련 가이드라인 개발, 지역과 국가의 역량 구축 및 훈련 워크숍 실시, 국가 정책과 프로그램 개발 지원을 포함할 수 있는 기술 지원 제공을 통해 지원받을 수 있다.
▶ 서비스 전달 보건 의료와 재활 서비스(보조 기기 기술 포함) 전달을 위한 시스템은 전 세계에 걸쳐 다양하다. 입원 전 치료 시기에는 고도로 숙련된 의료 전문가를 통한 선진 치료 시스템부터 자원이 제한된 지역에서 일반적으로 자원봉사자들이 진행하는 시스템에 이르기까지 몇몇 다른 모델이 존재한다. 진행되는 시스템에 상관없이, 입원 전 치료를 기존의 보건 의료 시스템에 통합시키는 것이 중요하다(28). 척수장애인에 대한 급성기와 급성기 이후에 의료 서비스는 대개 외상 센터, 일반 병원, 특수 척수 병동이나 센터와 같은 내원 시설을 통해서 제공되며, 반면에 재활 서비스는 내원, 외원 그리고 지역 사회 기반으로 제공될 수 있다. 고소득 국가에서는 척수손상 관리를 위한 특화 및 통합된 시스템을 대체로 선호하는 편이다. 예를 들어, 서비스가 ‘한 장소에서 모두 제공되는 방식(under one roof)’ 이나 4장에서 언급한 것처럼 치료와 관리의 각 단계 사이의 빈틈없는 환자 이송을 보장하는 조직화된 시스템 등을 들 수 있다. 유럽 척수손상 연맹(European Spinal Cord Injury Federation: ESCIF)이 발표한 정책 성명서는 척수장애인의 중앙 집중형 치료, 재활, 평생 관리를 권장하고 있으며, 당사자 치료의 모든 단계를 관리할 수 있는 전문 센터의 설립을 지지하고 있다(29). 특별 센터나 일반 병원의 전문 팀을 통한 조기 개입이 척수장애인을 위한 더 나은 결과로 이어진다고 보고되었다(2). 대안적이며 비전문적인 서비스와 비교해 전문 센터나 병동에서 단기간 머물거나 전문 팀에 의한 관리를 받는 경우, 비용을 줄이고, 합병증 발생을 낮추며, 퇴원 이후 재입원율을 낮추는 것으로 밝혀졌다(2, 30-42). 2개의 개발도상국을 포함해 전 세계 9개국에서 진행된 연구에 따르면, 척수손상 병동은 대개 물리 요법과 재활 의학을 전공한 의사들에 의해 운영되는 것으로 나타났다(43). 재활 단계에서 필요한 서비스에는 물리 치료, 작업 치료, 카운슬링, 보조 기기 기술 제공, 권리에 대한 전반적 개괄, 심리학
5. 의료 시스템 강화 123
및 성 심리학 지원 등이 포함된다. 치료 시간과 병원 입원 기간에 있어서는 환자별로 상당한 차이가 존재하지만, 환자들은 대체로 일주일에 5일 하루에 2-5시간 정도 치료를 받는다(43, 44). 보조 기기 기술 제공에는 제품 디자인, 생산, 배포와 평가, 맞춤, 교육과 같은 관련 서비스의 전달 까지 포함된다(45). 서비스 전달의 모델에 따라서, 척수장애인은 정부 서비스, 국제기구, NGO, 민간 영역, 위의 내용들의 조합(공공-민간 파트너십)을 포함한 다양한 이해 당사자들로부터 보조 기기 기술을 제공받을 수 있다. 정부의 자원이 제한적인 경우, 보조 기기 기술 제공에 있어 다른 이해 당사자들이 중요한 역할을 수행할 수 있다. 5개 아프리카 국가에서 진행된 장애인의 삶의 조건과 관련된 국가 연구에 따르면, 나미비아와 같은 몇몇 국가들은 다른 국가들에 비해 정부가 제공하는 보조 기기 기술의 비율이 상당히 높음에도 불구하고 대부분의 보조 기기는 정부가 아닌 다른 곳 에서 받는 것으로 나타났다(표 5.1 참조). 가족들과 함께 척수장애인 당사자도 장과 방광 관리 및 트랜스퍼, 휠체어 기술, 자기 신변 처리 방 법 등을 습득해야 한다. 이후에는 직업 재활, 스포츠, 문화 활동 등을 진행할 수 있다. (표 5.1) 이해 당사자별 보조 기기 기술 제공 국가 말라위 모잠비크 나미비아 잠비아 짐바브웨 출처: (11–15).
정부 19% 47% 60% 14% 28%
NGO 9% 4% 3% 9% 8%
민간 34% 36% 30% 44% 31%
기타 영역 38% 13% 7% 33% 33%
장애물 척수장애인은 종종 건강한 생활 습관 유지와 보건 의료 서비스 접근에 있어 문제점을 맞닥뜨리게 된다. 이러한 문제점 중 몇 가지는 다음과 같다.
이용성(Availability) 척수장애인의 복합적인 보건 의료에 대한 요구를 고려해 볼 때, 포괄적 범위의 서비스가 필요하다. 척수장애인이 선호하는 전문 센터를 통한 서비스의 전달을 위해서는 본질적인 투자가 요구되며, 그런 보건 의료, 재활 서비스는 종종 도시 근처에만 몰려 있어서 농어촌 지역과 외진 지역에서 이용이 제한되는 경우가 있다(2). 전직 척수장애 군인의 보건 의료 이용에 영향을 주는 요인을 조사한 미국 연구에 따르면, 일반 보건 의료 시설과의 거리가 이용에 영향을 주는 것으로 나타났다. 예를 들어,
124 척수 손상의 국제적 관점
내원과 외원 서비스를 이용할 때 거리가 먼 경우에 이용도가 떨어진다는 것이다(46). 호주의 농어촌 지역과 외진 지역을 대상으로 실시한 연구에 따르면, 통증 관리와 휠체어 좌석 교정과 같은 전문 서비스는 진단 테스트와 특수 장비에 대한 접근이 어려운 것과 마찬가지로 접근이 어려운 것으로 나타났다(47). 농어촌 지역과 외진 지역은 척수손상의 발생률이 매우 낮기 때문에, 지속 가능한 전문 보건 의료 서비스를 구축하는 일은 매우 어렵다(47).
접근성(Accessibility) 장애인은 종종 보건 의료 시설 접근성이 어려운 것으로 알려졌다. 접근성과 적절한 장비의 부족 으로 인해 의사나 다른 보건 의료 전문가들은 장애인을 위한 적절한(그렇지 않은 경우 일상적인) 절차를 고려하는 것을 앞서서 하거나, 잊거나, 실패하는 문제에 직면할 수도 있다(2). 미국 의사들을 대상으로 한 조사에서는 의사들이 자신들의 병원에 일정 부분 물리적 장애물이 있다는 것을 인식 하고 있음에도 불구하고 계속해서 접근 불가능한 장비를 사용하고 있다는 점이 드러났다(48). 보건 의료와 재활(보조 기기 기술을 포함) 서비스의 전달을 위한 시스템은 장애인 당사자와 가족이 협상을 하기에는 어려운 면이 있다. 그리고 복잡한 과정과 서비스의 단편화가 요구 충족에 있어 큰 장애물인 것으로 밝혀졌다(5). 보조 기기 기술에 대한 접근을 지원하는 ‘원스톱 숍’이 좀처럼 없으며, 종종 설계자, 제조업자, 공급자, 맞춤형 제공자, 재원 운영자 간의 이해관계에 얽힌 경쟁 까지 더해진다. 어떤 국가에서는 보조 기기 기술 서비스가 보건 서비스에서 분리되어 있어서 조정 하기가 어렵다. 한 연구에서, 이용자들은 서비스 전달의 지연, 관련된 단체와 담당자의 수, 전문가의 엉성한 대처 등이 보조 기기 기술에 대한 미충족 요구가 발생하는 원인이라고 설명했다(20).
수용 가능성(Acceptability) 대부분의 척수장애인이 재활 프로그램은 너무 표준화되어 있고, 개인의 요구 사항에 부합하는 맞춤형 내용이 없기 때문에 자신들의 요구에 맞지 않는다고 했다(17). 예를 들어, 보조 기기 기술은 종종 이용자의 개인적 요구와 거주 환경을 고려하지 않고 ‘규정’되는 경우가 있다. ‘없는 것보다는 무엇이라도 있는 것이 낫지’와 ‘모든 상황에 들어맞는 제품’과 같은 태도와 내용이 자원이 제한적인 지역에서는 일반적으로 통용된다(49-51). 이용자 요구에 대한 부적절한 평가는 개인이 부적절한 장비에 맞추어 가는 경우로 이어지고 (52), 그 결과로 부정적인 상황이 발생할 수 있다. 예를 들어, 휠체어가 개인의 요구에 맞추어 제공되지 않는 경우에 , 척수장애인은 욕창 , 반복 긴장 증후군 , 어깨 손상과 같은 이차 합병증의 위험에 놓이게 된다(53, 54). 척수장애인은 종종 보건 의료와 재활 정보에 기반한 결정을 내리는 데 필요한 정보와 지원에 대한 접근이 제한적인 것으로 나타났다. 개인은 경험과 지식의 부족으로 자신들의 요구에 대한 명확한 이해가 한정적이기 때문에, 특히 손상의 초기 단계에 취약할 수 있다(55). 이용자의 낮은 참여와
5. 의료 시스템 강화 125
개입이 저·중소득 국가에서 제공되는 많은 휠체어가 이용자의 환경에 적합하지 않거나 (56, 57) 방치되고 버려지는 (55) 이유를 설명할 수 있을 것이다.
장애물에 대한 대처 서비스 코디네이션 척수장애인을 위한 서비스 전달에 많은 이해 당사자가 관련되는 만큼 조직적이고 통합된 접근법이 중요하다. 진행되고 있는 서비스 전달 모델 유형에 상관없이, 서비스는 다양한 단계와 치료 세팅 간의 원활한 전환을 보장하기 위한 협력(코디네이션)이 필요하다(39, 58). 코디네이션 치료는 다양한 분야의 관계자들이 모여 팀의 형태를 띠므로 적절한 서비스와 자원을 척수장애인에게 연결해 줄 접근법을 증진할 수 있으며, 보다 효율적이고 평등한 자원의 배분을 보장할 수 있다(2). 코디네이션 에는 치료 코디네이터 확인, 개인 치료 계획 수립, 다른 서비스에 대한 적절한 소개와 효과적인 정보 이전 제공 등이 포함된다(2). 유사한 척수장애인 그룹으로 구성된 스웨덴과 그리스가 참여한 연구에서는 외상성 척수손상 발생 최초 1년 동안 환자의 관리 과정을 사전에 모두 확정한 경우에 합병증이 줄어드는 우수한 결과를 달성할 수 있었다(59).
서비스 전달을 위해 대안적이고 보완적인 모델의 이용 척수장애인을 위한 특화된 전문 서비스가 불가능한 지역에서는, 다른 서비스 전달 모델을 척수 장애인의 요구 충족을 위해 고려해 볼 수 있다. 몇 가지 대안적인 모델을 다음에 소개할 것이다. 강조되어야 할 점은 , 아래에 소개되는 모델은 독립적으로 운용되는 모델이 아니라 , 협업으로 이루어진 치료 시스템의 한 구성 요소라는 점이다.
소규모 전담 병동이나 팀 척수 병동이나 팀은 일반 병원의 시스템 안에 구성할 수 있다 . 예를 들어 , 브라질의 척수손상 전담 팀과 아프가니스탄의 소규모 병동은 수술 병원과 정형외과 센터 안에 세워졌으며, 가정 (home) 기반 후속 프로그램을 통해 환자 지원을 하고 있다 (2, 60). 베트남의 국립 재활 센터는 핸디캡 인터내셔널과 협력하여 기존 재활 센터 안에 특별 병동을 세워서 척수손상 서비스를 분산 시키는 프로젝트를 진행 중이다.
주류 건강 서비스에 대한 전문가 지원 현장 지원 상담 팀은 척수손상 전문의 팀이 없는 급성기 병원에 입원 중인 척수장애인 지원의 한 방안으로써 제안되었다(38). 이 팀은 척수손상과 관련된 합병증 예방과 관리 지원, 재활 서비스 관련 시의적절한 정보 자문, 병원 스태프들에 대한 교육 실시 등을 할 수 있다. 척수손상 센터는 일차 보건 의료 역량 강화를 위한 상담과 교육을 제공하고 지역 사회에 살고 있는 척수장애인에게 영향을 미치는 후속 문제들에 대한 사회적 서비스를 제공하는 역할을 수행할 수 있다(5).
126 척수 손상의 국제적 관점
방문 프로그램 모델 방문 프로그램 모델은 척수장애인이 3차 의료 센터에서 퇴원한 이후 전문적인 보건 의료 제공자와의 접촉을 유지할 수 있도록 해 준다. 이런 모델 속에서, 서비스는 대상자의 거주지 근처로 전달될 수 있고, 따라서 거리와 교통비와 같은 장애물을 극복할 수 있게 된다. ‘항공 클리닉’(박스 5.2 참조)과 결합된 외래 클리닉 및 가정 방문은 전문적인 의료와 재활 서비스를 농어촌 지역이나 외떨어진 지역에 거주하는 척수장애인에게 제공할 수 있는 방문 프로그램 모델의 예라고 할 수 있다. 그리고 이 모델은 서비스 전달의 대안적 형태로서 척수장애인의 인정과 지지를 받고 있다(5).
원격 의료와 원격 재활 정보 통신 기술은 척수장애인에게 지속적으로 지원 서비스를 전달하기 위해 사용되어 왔다(61, 62). 원격 상담과 의료적 치료와 재활을 위한 웹 기반 지침은 상처 치료와 같은 전문적인 척수손상 합병 증을 치료하기 위해 사용되었으며, 방광 관리와 같은 기타 다른 영역의 적절한 서비스 전달 모델이 될 수도 있다는 제안과 함께 여전히 유효하다(63). 정보 통신 기술의 사용은 또한 농어촌 지역과 외진 지역에 보조 기기 기술 서비스를 전달하기 위한 잠재적 해결책이라고 할 수 있다(64). 박스 5.2. 호주 동부 아넘 랜드 지역의 에보리진 원주민 공동체에 대한 항공 클리닉 지원 농어촌 지역과 외진 지역의 척수장애인에게 지속적으로 접근할 수 있는 보건 의료와 재활 서비스를 제공하는 것은 상당히 어려운 문제이다. 그중에서도 호주의 북부 지역에는 부적절한 보건 의료와 지원 서비스 때문에 척수손상을 입은 많은 원주민들이 지역 사회로 복귀하지 못하고 있다. 주요한 척수 외상과 심각한 비외상 병소는 메인 척수손상 병동 중 하나인 호주의 남부 아델레이드 시의 남호주 척수 손상 서비스 센터(SASCIS)에서 대부분 치료를 받는다. 비교적 경미한 척수손상 환자를 위한 의료적 치료와 재활 서비 스는 호주 북부 노던주 다윈시의 왕립 다윈 병원 재활 서비스 센터(RDHRS)를 통해서 제공된다. SASCIS는 호주 북부 지역에 살고 있는 대상자의 후속 조치 시행을 위해 매년 다윈과 앨리스 스프링스 시에서 여러 차례 방문 클리닉을 운영한다. 하지만 동부 아넘 랜드 지역에 거주하는 원주민들의 경우, 가까운 큰 도시에 가기 위해 장거리의 오지 길을 통과해야 하는 섬이나 외딴 지역에 살고 있기 때문에, 이러한 클리닉에 방문하는 것이 꽤 어렵다. 따라서, 호주 북부의 고립된 지역에 살고 있는 척수장애인의 요구를 충족해 줄 만한 프로그램이 필요했다. 1994년 주보험 사무소 차량 사고 팀(Territory Insurance Office Motor Accident Scheme)에서 아델레이드의 척수손상 재활 의사와 노던주의 척수 전문 간호사를 동부 아넘 랜드 지역의 두 개 마을(Yirrkala와 Gapuwiyak)로 파견하기 위한 펀드를 지원했다. 시간이 흐르면서 방문하는 마을과 진료를 받는 사람들의 수는 증가해서 12명의 대상자와 7개 마을 까지 늘어나게 되었다. 2002년 이후, 연합 보건 전문가(작업 치료사, 물리 치료사 그리고 에보리진 재활 연계 사무소 직원)들이 의사와 간호사들과 함께 참여하였고, RDHRS와 주보건 서비스로부터 자금 지원을 받아 왔다. 가능한 지역 에서는, 척수 방문 팀이 지역의 개별 환자를 돌보는 농어촌 지역, 외진 지역의 연합 보건 팀 및 의사, 간호사, 에보리진 보건 복지사와 같은 지역 사회 보건 관계자들과 협의를 진행했다. 마을 방문이 진행되지 않을 경우, 척수 방문 팀은 전화, 팩스, 이메일을 통해 연락할 수 있다. 비용에는 다윈과 고브시 사이의 항공 요금, 모텔과 마을 게스트 하우스에서의 숙박 요금, 지역 전세 항공기 요금 등이 포함되어 있다. 이 비용은 각 대상자와 전담 돌봄 제공자를 다윈시로 데려와 최소 이틀 밤을 지내게 하는 비용과 비교 했을 때 상당히 경제적인 편이라고 할 수 있다. 의료 시스템에 대한 경제적인 이점과는 별개로 척수장애인과 가족, 돌봄 제공자에 대해서도 다른 이로운 점들이 있다. 이 프로그램은 척수장애인, 가족, 전담 척수 손상 팀 간의 신뢰 관계를 형성할 수 있을 뿐만 아니라 척수장애인, 가족, 에보리진 보건 복지사와 외딴 지역의 간호, 의료 스태프에 대한 교육 기회(계획)도 제공할 수 있다. 현장 방문팀은 또한 외진 지역에 살고 있는 척수장애인의 어려움과 요구에 대한 지식을 획득할 수 있으며, 다른 지역에 도움이 될 수 있는 지역의 문제 해결 솔루션 관련해서도 지식을 확보할 수 있다.
5. 의료 시스템 강화 127
지역 사회 중심 재활(CBR) 지역 사회 중심 재활은 현재 전 세계 90여 개 이상 국가에서 진행된 광범위한 개발 전략이다. 지역 사회 중심 재활은 자원이 별로 없는 지역 사회에 거주하는 장애인을 위해 보건 의료, 재활, 보조 기기 기술에 대한 접근 기회를 잠재적으로 늘릴 수 있다(65). 우간다의 연구에서는 이분척추증에 걸린 5세 이하 어린이의 사망률이 50%에 육박하지만, 지역 사회 중심 재활을 실시하는 지역에서는 사망률이 16%로 비장애 아동의 사망률에 근접하는 것으로 나타났다. 생존율은 지역 사회 중심 재활 복지사의 방문으로 지원을 받고 격려를 받은 부모의 행동과도 관련이 있었다(66). 기존 전문가 지원 서비스와 지역 사회 중심 재활 프로그램의 파트너십 개발은 척수장애인을 위한 지속적이고 협력적인 치료의 기회를 제공하고 있다. 적절한 교육 및 감독과 더불어, 지역 사회 중심 재활 복지 사는 다양한 환경 속에서 척수장애인에게 지속적인 지원을 제공할 수 있다는 것을 보여 주었다. 많은 지역 사회 중심 재활 프로그램은 또한 자조 그룹과 같은 동료 지원 프로그램을 통해 척수장애 인을 지원해 왔다(67).
사람 중심 접근법 채택 척수장애인이(그리고 적절하게 관련된 경우 가족도) 계획과 결정 과정에 기여할 수 있는 협력적 접근 방법이 요구된다(55, 68). 척수손상 이후 사람들의 재활 경험을 연구한 질적 연구의 메타 분석은 당사자들이 보건 의료 종사자 들로부터 가치 있는 대우와 존중을 받았다고 느끼는 다음의 경우를 강조해서 제시했다 . 각각 1) 당사자를 재활 전 과정에 걸쳐 파트너로 간주한 경우, 2) 직접적이고 공개적인 방식의 커뮤니케이션을 가진 경우, 3) 정보를 공유한 경우, 4) 당사자들을 문제 해결과 결정 과정에 포함시킨 경우였다(17). 자기 관리 방법은 척수장애인이 장기간에 걸쳐 자신들의 건강을 유지하는 데 있어 매우 중요한 부분이다(54). 최근 의료 보건 시스템 내의 경직성으로 인해 이런 접근 방법의 중요성을 더욱 강조 되고 있다. 척수장애인의 자기 관리 방법 습득 교육에서 장, 방광, 피부 관리는 가장 중요한 주제로 강조되고 있다(54). 게다가 건강, 재활 관계자가 제공하는 훈련과 교육 이외에도, 척수장애인이 지식과 기술을 습득할 수 있는 다양한 방법들이 있다. 인터넷도 정보의 좋은 소스가 될 수 있고, 척수장애인이 자신의 상태에 대해 배우고, 자신의 보건 의료와 재활 과정에 스스로가 중요한 역할을 수행할 수 있도록 역량 강화를 하는 데 유용한 수단이 될 수도 있다. 예를 들어, 뉴질랜드 척수 재단(Spinal Trust)은 척추 해부학, 척수손상과 관련된 의학 용어, 척수장애인이 직면하게 될 문제에 대해 척수장애인에게 교육을 하기 위해 온라인 양방향 학습 코스인 ‘스파이널 이센셜(Spinal Essentials)’을 개발했다(69). 연구를 통해 드러난 것은 척수장애인이 병원에 입원하는 과정에서는 다른 환자들과의 만남과 같은 비공식적인 내용이든 혹은 동료 멘토링, 동료 지원, 동료 훈련 프로그램을 통한 보다 공식적인 내용
128 척수 손상의 국제적 관점
이든지 간에 동료로부터의 가치 부여가 중요하다는 점이다(17, 70). 동료 기반의 프로그램은 잠재적 으로 척수장애인과 장애인 가족의 결과물을 향상시킬 잠재력을 지니고 있다. 예를 들어, 미국에서 진행된 척수손상 동료 멘토링 비교 연구에서는 동료 멘토링 프로그램을 마친 이후 합병증이 줄어 드는 경향이 있다는 것을 보여 주었다(71). 동료 멘토는 (척수손상이라는) 공통의 특질을 가지고 있고, 자신들의 경험, 지식, 기술을 공유하면서 필요한 지원과 지지를 제공할 수 있다. 동료 멘토는 다음의 목적으로 활용할 수 있는데, 예를 들면, 최근에 척수손상을 당한 사람의 자신감 회복, 심리사회적 적응과 관련된 문제의 대처, 자기 신변 관리와 이동에 대한 훈련과 교육을 제공, 건강 관리 전략과 욕창 및 요로 감염증과 같은 이차 합병 증의 예방에 대한 정보와 조언 제공 등이다. 또 필요한 경우 보건 의료 복지사를 최초로 소개해 줄 수도 있다. 동료 기반 훈련은 보건 의료 및 재활의 다양한 단계에 접목시킬 수 있으며, 많은 다양한 환경에서 활용할 수 있다. NGO, 장애인 단체, 지역 중심 재활 프로그램은 저소득 국가에서 이러한 형태의 교육을 성공적으로 진행해 왔다. ‘Motivation(동기 부여)’과 같은 단체는 말라위, 모잠비크, 루마니아, 스리랑카와 같은 국가에서 휠체어 사용자를 위한 동료 훈련 프로그램을 운영하고 있다. 성인과 아동 장애인을 위한 그룹도 휠체어 기술, 건강, 장애인 인권 인식 제고 등을 장려하는 활동을 하고 있다(72).
보건 의료 시설에 대한 물리적 접근성 향상 장애인 권리 협약은 (21) ‘정당한 편의 제공’을 ‘다른 사람과 동등하게 장애인에게 모든 인권과 기본 적인 자유의 향유 또는 행사를 보장하기 위하여, 그것이 요구되는 특별한 경우, 과도하거나 부당한 부담을 지우지 아니하는 필요하고 적절한 변경과 조정을 의미한다.’라고 밝히고 있다. 폭이 넓은 자동문, 커다란 검사실, 높이가 조정되는 검진용 테이블, 휠체어가 접근할 수 있는 체중계, 낮은 체크인 카운터와 같은 정당한 편의 제공은 척수장애인의 보건 의료 시설에 대한 물리적 접근성을 향상시켜 줄 것이다.
▶ 인적 자원 척수장애인은 일반적인 그리고 전문적인 보건 의료와 재활 서비스를 제공해 줄 수 있는 폭넓은 범 위의 숙련된 인력이 필요하다. 이러한 인력에는 지역 중심 건강 및 재활 담당자를 포함한 의사(:, 응급 의학과 의사, 일반 의사, 신경외과 의사, 재활 의학 의사/재활 전문의, 물리 치료사, 외과 의사, 비뇨기과 의사), 간호사, 응급 구조사, 보철 및 교정 전문가(prosthetists & orthotists), 심리학자, 재활 공학 전문가, 치료사(작업 치료사, 물리 치료사, 언어 치료사), 사회복지사, 다양한 지원 스태프 등이 포함된다.
5. 의료 시스템 강화 129
장애물 보건 의료와 척수손상 영역의 인적 자원과 관련해 현재 세계적으로 당면한 문제에 대해 적절한 설명을 해 줄 충분한 정보가 없는 상태이다. 그러나 건강과 재활 분야 인적 자원의 세계적인 부족 현상, 특히 저·중소득 국가, 농어촌 지역, 외딴 지역의 부족 현상은 (2, 65, 73, 74) 척수장애인이 요구하는 관리를 보장할 수 있을 만큼의 척수손상 분야의 훈련된 인력 수가 부족하다는 점과 연관 된다. 저·중소득 국가에서는 재활 전문가를 위한 공식적인 훈련 프로그램이 별로 없는 편이다. 114개국을 대상으로 한 조사에 따르면, 37개국은 재활 인력 훈련에 대한 조치를 전혀 취하지 않았다(22). 재활 전문가 훈련 코스가 존재하더라도, 커리큘럼 자체가 종종 척수손상의 영역을 적절하게 포함하지 못하고 있다. 일화적 증거들에 따르면, 커리큘럼 속에 척수손상을 포함한 많은 훈련 프로그램이 있지만, 대부분의 정보는 대체로 일련의 강의를 통해 전달되고, 실무적인 관리 측면의 프로그램 시간 배정은 적은 편이다. 서비스 제공자의 경험 부족은 적절한 보조 기기 기술을 제공받아야 하는 척수장애인에게 상당한 장애물로 보고되고 있다(75). 미국 메인 주에서 진행된 연구에 따르면, 재활 전문가들은 보조 기기 기술 제공과 관련된 영역에 있어서 지식이 전혀 없거나 있어도 매우 기본적인 내용에 그치는 것으로 나타났다(76). 소아 작업 치료사들은 자신들이 불충분한 훈련과 기술 지원을 받았기 때문에 보조 기기 기술 제공과 관련된 영역의 확신이 부족하다고 설명했다(75). 척수손상의 사례가 많지 않은 것도 척수장애인을 대하는 보건 복지사들이 종종 훈련이 부족하여 당사자의 지속적인 치료 요구에 부응하지 못하는 이유가 되기도 한다 . 호주의 연구에 따르면 , 대부분의 연구 참여자들은 척수손상에 관한 지역 전문가의 지식이 제한적일수록 자신들의 요구 충족에 있어 가장 주요한 걸림돌이 된다고 인식하는 것으로 나타났다(5). 몇몇 연구에서는 많은 척수장애인들이 보건 의료 제공자로서 선호하는 일차 치료 담당 의사의 척수손상에 대한 지식 부족이, 척수손상 예방과 지속적인 보건 의료 제공에 장애물이 되고 있다는 점이 밝혀졌다(48, 77-80).
장애물에 대한 대처 장애인 권리 협약 4조와 26조는 당사국이 장애인과 함께 일하는 전문가와 다른 인력에 대한 훈련 촉진의 의무를 강조하고 있다(21). 척수장애인의 요구에 부합하기 위해, 국가는 건강과 재활 인력의 역량 구축을 위한 광범위한 전략을 고려해야 한다. 이러한 전략에는 교육과 훈련, 국가 내의 척수 장애 전문가 양성, 지역적인 상황에 따라서 불가능한 경우에 척수장애 전문 지식을 전달하기 위한 대안적인 방법의 사용, 보건 담당자 간에 협력적 실행 내용 구축, 서비스 전달의 질과 효율 향상, 외딴 지역에서 활동하는 보건 담당자에 대한 인센티브 도입 등이 포함된다.
130 척수 손상의 국제적 관점
재활 전문가를 위한 훈련 프로그램 수립 및 강화 재활 전문가의 극심한 부족 현상에 대처하기 위한 훈련 프로그램 수립에 대해 전 세계적인 요구가 있는 상황이다. 훈련 프로그램은 상급 교육 기관(학부와 대학원), 중급 교육 기관(인증 교육 기관), 하급 교육 기관(지역 사회 건강과 지역 중심 재활과 같은 목표 지향 훈련 코스)을 포함해 반드시 모든 수준에서 수립되어야 한다. 재활 인력을 위한 훈련 프로그램은 전문가 협회, 훈련 제공자, 척수 단체와 협회와 협력해 검토를 받아야 하며, 이를 통해, 보조 기기 기술을 포함한 척수손상, 건강, 재활에 대한 정보를 통합할 수 있는 최선의 방법을 결정해야 한다.
지속적인 전문성 개발 지원 지속적인 전문성 개발(감독을 포함한)은 기존의 보건 의료, 재활 인력의 지식과 기술을 유지·향상 시키는 데 필요하며, 실제적으로 실행하기 위한 등록제와 면허제로 연결될 수도 있다. 호주의 서비스 모델을 보면, 지역의 건강 전문가들이 교육과 전문적인 지원을 받은 후에 척수장애인 관리에 있어 자신감이 늘어난 것으로 밝혀졌다(47). 대면 접촉, 현장이나 인터넷 기반 교육, 원격 의료/원격 재활을 포함한 다양한 전달 모델을 이용할 수 있다. 특정한 방법을 사용할 경우, 이는 서비스 전달의 상황과 모델에 따라서 결정될 것이다(73). 어떤 보건 의료 요구는 특히 척수장애인에게 해당되지만(예: 자율 신경 이상 반사증), 많은 다른 보건 의료 요구는 또한 다른 건강 상태(예: 장, 방광, 욕창 관리)와 관련이 있다. 광범위한 건강 상태와 관련된 문제뿐만 아니라 보건 의료와 재활 인력 간의 협업 증진을 위한 전략 교육을 통합하고 확대 하는 부분도 고려되어야 한다(73, 81). 국제 척수손상 학회(ISCoS)가 2012년에 시작한 이러닝 패키지는 척수손상 분야에서 일하는 보건 의료, 재활 인력들에게 핵심 정보를 제공하고 지원하는 데 도움을 줄 수 있다(82). 척수손상 물리 치료사 국제 네트워크(International Network of Spinal Cord Injury Physiotherapists: SCIPT)와 같은 국제적, 지역적, 국내적 전문가 네트워크는 아이디어, 지식, 자원의 공유를 촉진하는 데 또한 도움이 될 수 있을 것이다(83). 국제 척수손상 교육 위원회(International Spinal Cord Society Educational Committee)의 계획인 ‘옵저버십(Observerships)’은 자격을 갖춘 건강 전문가들에게 3주에서 3달에 이르는 기간 동안 척수 센터의 환자 관리 업무 내용을 관찰 할 수 있는 기회를 제공할 목적으로 마련되었다(84).
서비스 전달을 위한 비보건 전문가 활용 재활을 위한 입원 기간이 짧아지면서 재활 전문가들은 단시간 내에 서비스를 제공해야 하는 상황에 직면하고 있다(71). 이전 서비스 전달 섹션에서 강조했듯이, 동료 지원, 멘토링, 카운슬링, 훈련은 척수장애인에게 지침과 지원을 제공하는 데 유용할 수 있고, 보건 시스템의 근본적 취약점을 극복 하는 데 도움이 된다. 지역 사회 기반의 NGO와 장애인 단체와 같은 많은 조직들이 동료 기반의 지원 프로그램을 수립해 왔다. 또한 척수손상 서비스 전문가를 동료 기반 프로그램에 포함시키고,
5. 의료 시스템 강화 131
이들을 의료 치료와 재활 서비스 부분에도 통합시켜야 한다. 교육과 지원의 제공은 비보건 전문가에 의한 프로그램 전달의 성공을 위해 매우 중요하다(71).
가족에 대한 적절한 교육과 지원 보장 다른 모든 인력 자원 중에서 가족은 척수장애인의 관리, 재활 프로그램 실행 지원, 일상생활 활동 지원 제공에 있어 매우 가치 있는 인력 자원이다. 나이지리아에서는 척수손상 관리를 위한 12주 과정의 집중 프로그램을 개발했다. 정형외과 병원은 침상이 부족하여 장기 입원 환자를 수용할 수가 없었다. 경험 있고 이용 가능한 인력의 부족을 극복하고 보완하기 위해 가족들을 대상으로 일정 시간의 교육이 진행되었다(85). 개발도상국에서는 보건 의료 유지 관리, 직접적인 환자 다루기 (manual handling), 감정적 문제에 대한 대응 내용에 초점을 맞춘다. NGO 또한 돌봄 제공자에 교육과 지원을 제공할 수 있다(86).
▶ 의료 기술 의료 기술은 척수장애인을 위한 모든 보건 의료 영역에 걸쳐 필요하고, 안전하고, 효과적인 예방, 진단, 치료, 재활을 위한 핵심이다(87). 의료 기술은 응급 및 필수 수술 치료, 진단과 임상 병리 기술, 영상 진단, 의료 기기 (보조 기기 기술 포함) 등과 같이 광범위하게 분류할 수 있다. 비록 다른 곳에서 언급되었지만, 보조 기기 기술과 휠체어도 이 섹션에서 특히 관심을 기울여야 하는 내용이다.
장애물 많은 국가에서 생산, 배포, 유지 관리와 관련된 문제로 인해 척수장애인의 보조 기기 기술에 대한 요구에 대응하는 것이 불가능할 수도 있다. 저·중소득 국가에서는 보조 기기 생산과 배포가 소규모로 진행되거나 혹은 어떤 경우에는 전혀 존재하지 않는다(50, 88). 많은 국가에서 보조 기기 생산에 필요한 재료와 장비에 대한 접근이 제한적이다. 개발도상국에서 보조 기기 기술 수요는 잠재적 이용자의 구매 역량 감소와 보조 기기의 존재와 장점에 대해 이용자들의 인식이 낮기 때문에 제한적 일 수 있다. 자원이 제한적인 많은 국가가 국제단체나 NGO의 원조에 의존하고 있다. 이 모델은 주로 저소득 국가에 새로운 혹은 수리한 휠체어를 공급·배포하기 위해 사용된다. 이 방법이 의도가 좋고 대량의 휠체어를 경제적인 방식으로 배포할 수 있는 반면에, 아래에서 언급하는 것처럼 일정 부분 제한 적인 내용이 있고, 지역의 역량을 구축하지 못하는 등 장기간에 걸쳐서는 지속되지 않을 가능성이 있다(89). 보조 기기 기술은 모든 상황에 걸쳐 일괄적으로 적용할 수가 없다. 예를 들어, 고소득 국가에서 척수장애인에게 적합한 휠체어 디자인이 저소득 국가에서는 유용하지 않을 수도 있다 (18). 게다가, 보조 기기 기술 원조에 동반하는 서비스 전달의 수준이 또한 단체마다 매우 다양할
132 척수 손상의 국제적 관점
수 있다(88). 또한 보조 기기도 종종 사용자를 위한 적절한 교육과 지원의 제공 없이 (56, 90) 지급 되는 경우가 있으며, 이는 기대 이하의 결과를 불러일으킬 수 있다. 보조 기기의 포기 혹은 미사용은 미충족 요구의 지표가 될 수 있다. 보조 기기 기술 포기율은 사용 첫해에 가장 높고, 이후 사용 5년 후가 되는 해에 다시 높아지는 것으로 나타났다(91). 보조 기기는 이용자의 요구 변화, 기기의 좋지 못한 성능(효율성, 신뢰성, 내구성, 편리성, 안전성, 편안함에 따른), 기기 선택 과정에서 이용자의 참여 부족의 결과로 버려질 수 있다(91). 보조 기기의 형태와 척수손상의 수준이 보조 기기 기술을 이용하느냐 마느냐에 큰 영향을 미칠 가능성이 높다(92).
장애물에 대한 대처 개발도상국에 적절한 보조 기기 기술을 제공하려면 저비용의 지속 가능한 전략이 필요하다. 각각의 접근 방식의 적합성은 각국의 상황에 따라 좌우될 것이며, 보조 기기 기술의 형태는 매우 다양해질 수도 있다. 이 경우에 고려해야 할 요소로는 투입 내용(재원과 기술 요구 사항), 지속 가능성(외부의 지원 없이 생산을 하거나 혹은 장기간에 걸친 안정적인 외부 지원의 잠재성), 적절성(얼마나 보조 기기 기술이 이용자의 요구에 부합하는지 여부), 영향(주어진 시간 안에 생산과 배포할 수 있는 양) 등이 포함된다(88).
적절한 기술의 디자인 적절한 기술 면에서는 이용자의 환경, 요구, 선호도에 맞는 디자인의 특징이 요구된다(93). 거친 지 표면 , 전기의 제한적 사용 , 고장 발생 시 서비스 부품 공급 같은 지역의 문제들이 사전에 고려 되어야 한다(18, 88, 94). 몇몇 단체들은 지역의 많은 문제를 극복할 수 있는 개발도상국용 이동 기기를 개발해 왔다(72, 95). 표준화를 통해 제품의 신뢰도를 향상시키고 이용자에 대한 잠재적 위험을 감소시키며 보조 기기의 품질을 향상시킬 수 있다(96). 국제 표준화 기구(International Standards Organization: ISO)는 수동, 전동 휠체어와 스쿠터에 대한 표준과 버스와 밴을 이용 하는 휠체어 장애인의 교통과 관련해 교통 표준을 보유하고 있다(96). 그러나 이러한 표준은 모든 상황에서 동등하게 적용되는 것이 아니므로 지역 환경과 이용자의 특성과 같은 요소를 고려한 국가 표준의 개발이 중요하다(18, 97).
생산과 배포를 위한 적합한 모델의 선택 다양한 생산 모델이 보조 기기 기술의 활용도를 높이기 위해 저소득 국가에서 활용될 수 있다. 예를 들어, 소규모 워크숍(생산 공장) 방식을 통해서, 지속 가능성을 높일 수 있도록 지역의 기존 조립 시설을 포함시키고, 지역 주민의 고용을 창출하고(장애인 포함), 보다 적당한 가격의 적절한 제품을 지역 환경에 맞게 공급할 수 있을 것이다(89, 98). 그러나 이런 모델이 저소득 국가에서 다양한 차원의 성공을 거두기 위해서는, 시스템을 구성하고 유지하기 위한 충분한 시간과 재정적 투자가 필요하다. 게다가 이런 모델은 종종 전체 국민의 많은 수요에 대처할 수 있는 능력에 제한이 있을
5. 의료 시스템 강화 133
수도 있다(88). 이 경우에, 대량 생산 능력을 보유하고 있는 중국, 인도와 같은 몇몇 국가가 지방, 국내, 지역에 제품을 공급할 수 있다.
포괄적인 서비스 전달 보조 기기 기술 선택, 획득, 사용법의 숙지를 위해서는 사람들에게 적절한 서비스가 제공되어야 한다. 이러한 서비스에는 진단 및 처방, 선택과 맞춤, 장비 사용에 대한 이용자 교육과 지원, 안전 하고 효율적인 사용을 보장하는 후속 조치 시행, 지속적인 관리와 수리, 교환 서비스 등이 포함된다. 포괄적인 서비스가 준비되지 않는다면, 시간이 흐름에 따라 변하는 이용자의 요구를 충족할 수 없고, 결과물의 질이 떨어지고, 보조 기기는 버려질 수도 있다(89). 기증받은 휠체어를 자신들의 아 이들에게 제공했던 돌봄 제공자의 인식에 대한 과테말라의 연구(94)를 보면, 휠체어가 매우 유용한 것으로 인식하고 있지만, 돌봄 제공자들은 휠체어 사용을 지원할 수 있는 지역의 서비스와 협력을 통한 휠체어 제공이 필요하다고 지적했다(박스 5.3 참조). ‘자원이 부족한 환경에 수동 휠체어 제공에 대한 가이드라인’과 같은 출판물은 서비스 전달에 관한 유용한 정보와 제안 내용을 제공하고 있다(18). 또한 종합적인 전달 시스템을 가진 나라의 사례에서 여러 가지 교훈을 얻을 수 있다(45). 예를 들어, 1998년에 제정된 미국의 보조 공학법(Assistive Technology Act)은 시연 센터, 자금 대출, 기술 지원, 외딴 지역 대상자 방문을 포함한 다양한 서비스 제공을 위해 각 주에서 운영하는 프로그램에 자금을 지원한다(103). 시연 센터와 은행 자금 대출은 이용 가능한 보조 기기 기술에 대해 이용자의 인식을 향상시켜 줄 뿐만 아니라 보조 공학 의사의 지식과 기술을 향상시키고 보조 기기 결정 과정에 많은 도움을 줄 수 있는 잠재성을 가지고 있다(104). 사람들은 보조 기기가 자신의 요구에 적합한지를 결정하기 이전에 자신의 환경 속에서 보조 기기를 미리 시험해 볼 수 있다(91).
▶ 의료 정보 시스템 2장에서 강조한 것처럼, 많은 국가가 척수손상에 대한 기본 정보가 부족하다(105). 개인적, 서비스적, 전 국민적 차원의 척수손상에 대한 정보는 의료 분야 계획과 예산 수립, 부상 예방과 건강 증진 노력 선도, 직접적인 추가 연구 지원, 재활 결과 향상을 위해 중요하다(29, 106). 정보는 다음과 같이 개인적, 서비스적, 전 국민적 차원에서 수집되어야 한다. ❶ 개인적 차원에서는, 정보는 반드시 연령, 성별, 손상의 메커니즘이나 원인, 손상 날짜, 입원 날짜, 합병증, 관련 손상, 제공받은 서비스의 형태, 치료 결과, 신경학적 상태, 퇴원과 재입원 장소 등을 포함해야 한다(106-110). ❷ 의료 및 재활 서비스 차원에서는, 시설 차원의 서비스, 서비스 결과, 의료와 재활 서비스의 비용 및 장점에 대한 정보가 필요하다(2, 65, 111). 이 정보에는 비용, 인적 자원, 시설 자원(예: 침상), 서비스의 형태, 서비스의 횟수, 이송과 대기 명단 등을 포함할 수 있다. ❸ 전 인구적 차원에서는, 데이터 수집은 척수손상의 발생, 유병률, 병인을 확인하고 경향을 나타내기 위해 사용해야 한다.
134 척수 손상의 국제적 관점
박스 5.3. 변화의 수레: 휠체어 이용자에게 적절한 서비스를 제공하려는 루마니아의 노력 루마니아에서는 적절한 휠체어 서비스에 대한 요구가 매년 꾸준히 증가하고 있다. 2010년 조사에 따르면, “휠체어가 필요한 5명 중 1명이 휠체어를 사용하지 못하고 있다… 이들은 휠체어가 없어서 전혀 움직일 수 없거나 혹은 자비로 마련을 해야 하는 형편이다.” (99) 모티베이션 루마니아 재단(Motivatioin Romania Foundation: MRF)은 루마니아 장애인의 삶의 질 개선을 위한 지속 가능한 프로그램을 제공하기 위해 1995년에 설립되었으며, 이동 관련 장애를 가진 9000여 명 이상의 루마니아 성인 및 아동에게 포괄적 서비스 패키지를 지원해 왔다. 모티베이션 루마니아 재단의 휠체어 프로그램은 초기에는 20명의 휠체어 이용자를 대상으로 시작해서 적절한 이동 장비 사용과 자립 생활에 대한 동료 그룹 훈련을 제공하였었다. 그리고 현재는 연간 약 1000명 정도를 대상자로 하는 프로그램으로 성장했다. 모티베이션 루마니아 재단의 휠체어는 초기에는 후원과 기부로 진행이 됐으나, 현재는 전체 수요의 16-30%에 해당하는 비용은 부분적으로 국립 건강 보험 공단(NHIA)으로부터 지원받고 있다. 2004년, 2009년, 2011년 미국 국제 개발 기구(USAID)의 펀드 지원이 모티베이션 루마니아 재단의 휠체어 이용자 서비스 역량 증대에 많은 도움이 되었다. 이 펀드로 7개 지역 팀을 지원하였으며, 휠체어 기술자 & 자립 생활 강사 (휠체어 이용자), 물리 치료사로 구성된 각 팀은 다음의 서비스를 제공하고 있다. ∙휠체어 평가와 처방: 각각의 이용자의 개인별 요구에 맞춘 휠체어 제공을 보장하기 위한 맞춤형 측정을 진행한다. ∙휠체어와 특수 좌석 제공: 개조 및 비개조된 휠체어를 다양한 휠체어 이용자에게 제공하고 있으며, 특수 좌석 장비를 특히 뇌성 마비 장애 아동에게 제공하고 있다. ∙자립 생활 훈련: 휠체어 이용자들이 동료 주도 훈련에 참여할 수 있으며, 휠체어 기술, 개인위생, 자기 신변 관리 (예: 욕창과 요로 감염증 예방과 관리), 성과 통합, 카운슬링, 동료 지원 그룹 등을 이 훈련을 통해 제공한다. ∙휠체어 스포츠 ∙건축물 접근성: 건물의 휠체어 접근성 관련한 루마니아 최초의 국립 전자 자료 (100, 101). 보다 많은 루마니아의 이동 관련 장애인들이 필요한 교육과 더불어 알맞은 휠체어를 이용하기 전에 극복해야 할 중요한 과제들이 있다. 예를 들어, 휠체어가 필요한 루마니아 장애인은 매 5년에 한 번씩 국립 건강 보험 공단이 허가받은 공급자에게 지불한 기본 가격의 휠체어를 제공받을 자격이 있다. 그러나 펀딩 승인에 몇 개월씩 소요될 수 있고 평가, 개조, 휠체어 기술 훈련 내용이 기본 가격 안에 포함되어 있지 않기 때문에 각 이용자의 개인별 요구는 고려되지 못했다. 모티베이션 루마니아 재단은 아래의 몇 가지 방법을 시도해 이 어려움을 극복하기 위해 노력했다. ∙알맞은 휠체어 제공에 관한 인식이 처방 전문가 사이에서 제고되어 왔다. 2010년 모티베이션 루마니아 재단은 ‘자 원이 부족한 환경에서 알맞은 휠체어를 제공하는 WHO-ISPO(국제 재활 의학회)-USAID 가이드라인’을 소개 했다. 2011년에 모티베이션 루마니아 재단은 휠체어 처방 전문가를 위한 최초의 WHO 훈련 워크숍을 개최하였 으며, 루마니아에서 알맞은 휠체어 공급을 늘리기 위해 이 훈련을 지역으로 확대시킬 계획이다. 2012년에 모티베이션 루마니아 재단은 루마니아 직종 코드(COR)에 휠체어 평가사, 처방 및 개조 기술자와 같은 새로운 전문가 코드를 포함시켰으며, WHO 휠체어 서비스 교육 패키지를 기반으로 이런 전문가를 위한 공식적인 훈련 커리큘럼과 과정을 개발하고 있다(102). ∙휠체어의 적절하고 신속한 전달을 보장하기 위해 후원자들의 도움으로 휠체어 펀드를 설립하였다. ∙중기 수요를 감당하기 위해 국제 후원자들로부터 펀드를 모금했다.. 루마니아의 휠체어 공급과 관련된 어려움을 극복하기 위해 활동하면서, 모티베이션 루마니아 재단은 보다 많은 이동 장애인들이 자신들이 요구하는 휠체어를 공급받고, 교육, 고용, 지역사회 삶에 참여하기 위한 기술과 자신감을 배양할 수 있도록 만들었다. 출처: (101).
모든 정보는 경제적 혜택과 서비스의 효력을 확인하고, 의료 연구, 펀딩, 자원 배정을 위한 우선 순위를 정하는 데 도움을 주기 위해 개인별 개선 데이터와 함께 사용되고 수집되어야 한다 (112-115). 또한 정책, 프로그램, 의료 및 재활 서비스의 결과 및 영향(원인과 효과)에 대한 주기적인 평가가 진행되어야 한다(116). 5. 의료 시스템 강화 135
또한 법률과 정책, 조직적 구조, 건강과 재활 이상의 서비스(예: 교통), 태도의 측면에서 개인이 경험한 장애물 및 촉진 요인과 관련된 정보의 생산이 중요하다(109, 117). 지역적·국가적 척수손상 등록 시스템을 구축하는 것이 중요하다(29). 국가는 데이터의 이용 가능성 및 품질에 대한 격차를 확인하고, 필요한 정보 유형을 우선순위화함으로써 정보 시스템 개발을 위한 노력을 기울여야 한다. 국제적, 지역적, 국내적 차원의 데이터 수집과 비교를 촉진하기 위해, 프레임워크와 사용하는 용어의 일관성 유지가 필요하다(106). 2장에서는 척수손상 정보 수집과 관련된 의료 시스템 지원을 위해 이미 개발된 국제적인 프레임워크를 상세히 소개했다.
▶ 비용 마련과 적정한 비용 장애물 척수손상을 당한 사람들은 손상 시점부터 지속적인 의료적 치료와 재활이 필요하다. 그러므로 척수 손상과 관련된 초기의 그리고 지속적인 비용 마련이 중요하다(40, 118). 이러한 비용은 필요로 하는 상황과 형태에 따라 다양하며 (40), 의료 시스템의 구조와 자금 마련 방식이 다르기 때문에 다양한 의료적 환경 속에서 일반화시킬 수 없다. 자세한 내용은 2장을 참조하도록 한다. 척수장애인은 종종 추가적으로 자신이 의료 서비스 비용을 지출해야 하는 상황과 자신이 비용을 지불해야 하는 상황에 직면하게 되며, 이는 개인과 가족에 지나친 부담을 줄 수 있다(79). 일반적 으로 장애인은 비장애인보다 빈곤 비율이 더 심하고 (2), 따라서 보건 의료, 재활, 보조 기기 기술과 관련된 비용을 감당할 여력이 없을 것이다. 나이지리아에서 진행된 연구(저소득 국가에서 진행된 소수의 연구 중 하나)에 따르면, 연구에 참여한 41.1%의 척수장애인의 급성기 치료 비용이 이들의 연간 소득의 50% 이상을 차지하는 것으로 나타났다(119). 이 연구에서, ‘비용’은 직접 비용(예: 병원비)과 간접 비용(예: 소득 손실)을 모두 고려한 금액이다. 보조 기기 기술 이용 비용이 제삼자에 의해 보전되지 않는다면 척수장애인은 보조 기기에 접근할 수 없고, 특히 저·중소득 국가의 사는 척수장애인일수록 더 심각하다(120). 우간다에서 (척수손상을 포함한) 신체 장애인을 대상으로 진행된 연구에 따르면, 보조 기기와 관련된 우선적인 장애물이 비용, 즉 보조 기기의 구매, 유지 보수, 교체 비용이 너무 비싼 것으로 밝혀졌다(121). 의료와 재활 치료에 많은 비용을 지출한 외상성 척수손상 장애인은 알맞은 휠체어를 구매, 유지할 수 있는 비용이 남아 있지 않을 수도 있다. 비용과 관련된 장애물은 고소득 국가에서도 문제가 되고 있다. 예를 들어, 미국에서는 모든 보조 기기 기술의 거의 절반 정도가 제삼자의 지원 없이 구매되고 있다(19). 정부, NGO, 건강 보험 회사가 ‘의료적으로 필요한’ 보조 기기 기술을 구매하거나 제공 비용을 부담하고 있다. 그러나 서비스 비용과 보상 범위의 제한으로 이러한 보조 기술에 접근하는 것이 제한될 수도 있다(19). 장애인은
136 척수 손상의 국제적 관점
종종 신청 자격 요건, 제한, 과도한 서류 작업, 규칙, 구제, 거절, 승인 거부 등에 직면하게 된다. 이는 낮은 사회 ·경제적 배경 출신 사람들이 필요한 보조 기기 기술의 형태를 획득하는 데 있어 불평등한 결과로 이어질 수 있다. 예를 들어, 낮은 사회·경제적 배경을 가진 척수장애인은 자신들이 필요로 하는 맞춤형 휠체어보다 일반 표준 휠체어를 제공받을 가능성이 더 크다(93).
장애물에 대한 대처 국가는 척수장애인을 포함해 모든 장애인이 그들이 필요로 하는 서비스에 대한 접근을 보장받을 수 있도록 보건 의료 서비스 분야에 적절한 예산(펀드)을 배정해야만 한다. 다양한 재정 선택 방안을 통해 일반 국민과 척수장애인의 보건 의료 서비스 이용을 늘릴 수 있는 가능성이 있다 (2). 이러한 선택 방안에는 세제 수입의 효율성을 증가시켜 보건 분야의 충분한 재원을 마련하고, 정부 지출의 우선순위를 새롭게 정하고, 혁신적인 기금 모금을 진행하고, 의료 시스템의 전반적인 효율성을 향상시키는 내용 등이 포함된다. 예를 들어, 합리적으로 조정된 서비스 전달 시스템은 행정 비용을 줄이고, 중복을 피하고, 장기간에 걸쳐 보다 고가의 보건 의료비용이 청구될 수 있는(예: 욕창) 보건 의료와 재활 분야의 전달 지연을 막을 수 있다. 보조 기기 기술에 대한 접근성 향상 전략에는 지역의 제품 생산 장려, 관세와 수입세 감면, 기존 요구에 기반한 규모의 경제를 키우는 내용 등이 포함된다(2). 보조 기기 기술을 포기하는 원인과 보조 기기 기술과 관련된 복잡한 비용의 원인은 포기의 가능성이 높은 기간 동안에 보조 기기 비용 대출, 임대, 재사용에 있어서 고려해야 할 점을 시사하고 있다(91). 대출과 임대 프로그램을 통해 절감한 비용은 장기 수요에 맞추어 재정(펀딩) 시스템을 뒷받침하기 위해 사용할 수 있다(91). 몇몇 국가는 국가 혹은 주 보험 계획을 통해, 예를 들어 도로 교통사고로 외상성 척수손상을 입은 사람을 위해 강제적인 제삼자 보험이나 자발적 후원 모델로 보상을 진행하고 있다. 스위스에서는, 스위스 척수 재단 (Swiss Paraplegic Foundation)이 운영하는 소정의 연간 후원금을 납부한 후원자 협회 회원들에게 외상성 척수손상 발생 시에 개인 비용의 상당 부분을 지원할 수 있는 자격을 주고 있다. 회원 자격은 거주 장소, 사고 발생이나 치료 받는 지역에 상관없이 누구에게나 열려 있다 (122). 뉴질랜드에서는, 사고 보상 공사(Accident Compensation Corporation)가 모든 뉴질랜드 국민과 방문자를 위해 (원인에 상관없이) 포괄적인 무과실 개인 손상 비용을 전부 부담한다(123). 이 제도는 사람들의 소득, 기업의 급여 지급액, 자동차 연료비, 자동차 면허 비용에 대한 세금과 기타 정부 재원을 통해 자금 지원을 받는다. 척수손상과 관련된 많은 원인이 있기 때문에, 사람들을 보건 의료와 재활 서비스 이용과 관련된 재정 위기로부터 보호하기 위해 다른 메커니즘을 마련할 필요가 있다. 척수손상에 대한 높은 비용을 고려했을 때, 적정한 건강 보험은 치료 측면의 직접 비용을 최소화하는 데 있어 중요하다. 장애
5. 의료 시스템 강화 137
보험 계획은 서비스와 장애인을 위한 확실하고 지속적인 지원 기반을 제공할 수 있다(124). 많은 개발도상국에서는 척수장애인을 위한 특별한 서비스 구축과 관련해 필요 자원이 부족할 수 있기 때문에 국제 협력이 필요하다. 장애인 권리 협약 32조는 이러한 환경의 당사국이 보건 의료, 재활, 보조 기기 기술 체계를 갖출 수 있도록 국제기구 및 지역 기구, 시민 단체, 다른 당사국들이 경제적·기술적 지원을 제공하고, 당사국과 더불어 조치를 취할 의무를 강조하고 있다.
▶ 연구 새로운 치료 방법 척수손상의 의료적 치료와 재활과 관련된 연구는 수십 년 동안 진행되었고, 그 결과 척수장애인이 높은 수준의 양질의 삶을 영위하고, 비장애인처럼 오랫동안 사는 것을 가능하게 하는 등 많은 성과가 있어 왔다. 또한 보조 기기 기술에 있어서 눈에 띄는 혁신이 진행되었다. 예를 들어, 휠체어 기술의 발전은 자세 유지, (생리학적 기능을 포함한) 기능, 경직, 구축, 압력 관리(욕창), 편안함, 기타 문제 등에 대처할 수 있도록 경사 조절 시스템과 다리 부분(leg-rests)의 높이 조절을 통해 척수장애인의 요구를 잘 수용할 수 있게 되었음을 의미한다(125). 가상 환경과 로봇 공학의 발전 (126, 127)뿐만 아니라 타이핑을 위해 언어나 눈의 움직임을 이용하는 대안적인 키보드 (128, 129)와 같은 컴퓨터 기술은 재활을 촉진하고 삶의 다양한 활동에 참여할 수 있도록 도와 주었다. 장비의 신경학적 조절에 관한 연구는 사람들이 자신들이 원하는 바를 생각 하면 팔을 움직일 수 있는 인공(prosthetic) 팔 개발에까지 이르렀다(120). 또한 척수손상의 잠재적인 새로운 치료법들이 등장하고 있다. 어떤 치료법은 여전히 동물 실험 단계에 있는 반면, 다른 치료법은 임상 전 연구 단계에 있는 경우도 있고 치료의 가능성을 보여 준 몇몇 치료법은 현재 사람을 대상으로 임상 시험이 진행 중이다(130-133). 다만 줄기세포 치료와 같은 치료법은 과학적인 문제, 윤리적 문제, 안정성의 문제와 관련해 상당한 논란이 되고 있다(박스 5.4 참조). 연구자들의 노력에도 불구하고, 현재는 손상된 척수를 재생시키거나 대체할 수 있는 치료법은 알려지지 않고 있다. 하지만 생체 의료 연구자들은 미래에는 기존의 의료 치료와 재활이 접목된 새로운 복합 치료법이 현실화될 것이고, 이를 통해 척수의 재생과 대체가 이루어질 수 있는 획기적인 발전이 가능할 것이라는 믿음에 일반적으로 동의하고 있다(133). 치료의 희망 속에 새로운 치료법을 찾고 있는 척수장애인과 가족들은 이 분야의 복잡성과 불확실성을 인지해야 한다. 척수 장애인과 가족들은 격려를 통해 이러한 치료법에 경험이 있는 임상 전문가, 저명한 연구자, 척수 장애인 당사자를 포함한 다양한 출처의 조언을 구할 수 있어야 한다.
138 척수 손상의 국제적 관점
박스 5.4. 줄기세포 치료: 희망인가, 사기인가? 신경 시스템의 줄기세포 발견과 줄기세포 생물학의 급속한 발전은 줄기세포 치료가 척수손상을 포함한 중증 신경 질환 회복에 기여할 것이라는 희망을 불러일으켜 왔다. 이러한 발견은 또한 법 규제가 느슨한 지역에서 회복을 간절히 원하는 중증 질환자를 대상으로 ‘줄기세포 관광’이라고 알려진 줄기세포 치료 상품을 판매하는 기업가에게 새로운 사업 기회를 열어 주었다. 이런 치료는 적절하게 고안된 임상 시험을 통해 철저히 검증, 평가를 받지 않았을 뿐만 아니라 미국 식품 의약국(FDA)과 같은 기구의 규제 승인을 받지 않았다. 몇 가지 변수가 줄기세포 관광의 급속한 발전에 기여를 했다(134). 이러한 변수에는 백혈병 같은 혈액학적 질환에 대한 줄기세포를 이용한 성공적인 치료 사례가 포함된다. 따라서, 임상 등급의 세포 처리 시설에 접근할 수 있는 기업 가는 입증되지 않은 다양한 증상에 대해 세포를 준비, 제공할 수 있게 되었다. 게다가, 인터넷에 대한 접근은 전례 없는 광고 기회를 만들어 냈으며 (135), 중국, 인도와 같은 국가에서 실시할 수 있는 치료가 의료 관광으로 부상했다 (136). 줄기세포 관련 기업가들은 규제 요건의 방해, 너무나 신중한 과학자, 무작위 축출과 대조군을 포함한 엄격한 연구 방식 때문에 척수장애인의 효과적인 치료가 거부되어 왔다고 주장한다(137). 그러나 단편적 보고를 제외하고는 이런 기업가들은 안전하고 효과적으로 줄기세포를 사용하기 전에 수집해야만 하는 중요한 데이터를 별로 확보하지 못했다. 그리고 종종 치료의 실질적 결과를 확인하기 위해 장기간에 걸쳐 진행되어야 하는 포괄적 후속 조치가 부족하다. 줄기 세포 치료가 새로운 재활법과 더불어 제안됐을 때, 어떤 기능적인 부분의 향상이 과연 줄기세포 때문인지 재활 때문 인지 확인하기 어렵다. 줄기세포 관광에 비판적인 내용을 처음으로 담은 보고서는 직접 척수 이식 전후에 배아 세포 치료를 받은 척수장애인의 신경학적 관찰 결과를 포함하고 있다(138). 중국 조사관들에 의한 이 실험의 후속 보고서를 통해 어떤 환자가 이식 으로 인해 혜택을 보았는지를 확인하기 위한 노력들이 진행되었고 (139), 배아 세포 이식 이후에 발생한 일련의 합병증이 보고서에 기술되어 있다(140). 많은 수의 비영리, 정부 기관들은 줄기세포 관광의 위험성을 알리는 성명서를 발표 했으며, 줄기세포 치료 전에 척수장애인과 가족들이 고려해야 할 점을 알리는 교육 도구를 만들어냈다. 새롭게 합의된 주요 원칙은 다음과 같다. ∙임상 시험은 환자나 가족으로부터 비용을 받아서는 안 된다. ∙적절하게 특성화된 치료가 필요하다. ∙안전과 효능에 관한 합리적인 증거를 확보하기 위해 약물학과 독성학의 데이터 향상이 필요하다. 만약 한 번의 치료로 질병의 광범위한 범위에 효능이 있다고 광고를 할 때, 줄기세포 치료의 주요 지표에 의문을 제기해야 한다(141). 근거 없는 치료를 제공하는 잘못된 연구자들 때문에 합법적인 줄기세포 연구에 대해 의심을 불러일으킬 위험이 있었다. 강화된 정부 감독으로 인해, 몇몇 심각한 부작용 사례 이후에 어떤 줄기세포 클리닉은 문을 닫았고 (142), 반면 다른 업체들은 허위 광고로 벌금을 내기도 했다. 지금은 줄기세포 치료의 위험성 정보를 개인에게 조언해 줄 수 있는 교육 정보를 이용할 수 있고 (143), 정보에 기반한 사전 동의를 통해 치료라는 환상 속에서 발생한 어려움 및 윤리적 문제에 대해 상당한 관심을 직접적으로 기울여 왔다(130). 타당한 의학적 혁신과 근거 없는 줄기세포 치료의 적용을 구분하기 위한 시도가 진행 중이다(144, 145). 그럼에도 불구하고, 치료의 가능성이라는 미끼는 여전히 강력한 유인책이며, 특히 환자의 눈에 띄는 변화를 언급한 일화적 보고서가 결부된 경우 더욱 그러하다. 따라서, 척수장애인은 과학적으로 확실 하게 입증된 급성, 만성 척수손상 치료가 현실화되기 전까지는 희망에 기인한 치료 (146)를 계속해서 받게 될 수도 있을 것이다.
기타 연구 척수장애인을 위한 가장 적합한 서비스 전달 모델에 있어 이용 가능한 증거가 불충분하다. 접근율을 결정하고 (19) 접근성 향상을 위한 비용 효율적이고 합리적인 서비스 전달 모델을 확인하기 위해 추가적으로 보건 서비스 연구가 필요하다. 또한 척수장애인, 보건 의료 인력, 정부와 펀딩 기관을 포함한 광범위한 이해 당사자에 의한 증거 기반의 가이드라인이 필요하다. 이런 가이드라인이 없다면,
5. 의료 시스템 강화 139
보건 의료 인력과 기타 관련자들은 적합한 개입 방법에 관해 사전 동의에 의한 임상 결정을 내리는 데 있어 확신을 갖기 어려울 것이며, 자신들의 치료와 관련해 척수장애인의 사전 동의에 의한 선택을 지원하지 못할 수도 있을 것이다. 보조 기기 기술의 영역에서는, 현재는 척수장애인의 결과에 미치는 영향과 관련된 매우 소수의 경험적 증거만이 있는 상황이다(147, 148). 척수장애인을 위한 보조 기기 기술 영역의 연구 결과 없이는, 어떤 일을 해야 하는지, 얼마나 그 일이 잘 진행될지, 누구를 위해 일을 진행해야 하는지에 대해서 결정을 내리기가 어려울 것이다.
결론과 제안
이 장에서는 척수장애인에게 필요한 의료 서비스(재활과 보조 기기 포함) 접근을 보장하기 위한 보건 시스템 강화 방안에 대하여 광범위한 정보를 확인해 보았다. 이 장에서 제시된 증거를 기반으로, 다음의 제안 내용을 고려해 봐야 한다. 광범위한 이해 당사자들은 이런 제안을 적용하기 위해 역할을 수행해야 하고 협의를 위해 노력해야 한다.
▶ 리더십과 거버넌스(governance) • 지속 가능한 국가 계획의 기반 제공을 위해 포괄적인 상황 분석을 실시한다. • 상황 분석 및 이용 가능한 최고의 연구 증거와 우수 사례에 따라서 국가 정책 및 계획을 개발, 수정한다. • 척수장애인을 위한 건강 관련 결과 향상 가능성을 높이기 위해 기타 관련 분야(예: 교육, 고용, 교통, 사회 분야)와 파트너십을 구축한다. • 연구와 향후 정책 결정에 관련 혹은 영향을 받는 사람들의 지식, 경험, 식견을 통해 획득한 증거를 이용하기 위해 주요 이해 당사자들과의 정책 대화에 참여한다. • 다자간, 양자간 관계의 후원자들은 지속 가능하며 투명한 국제 협력을 통해 개발도상국에 적절한 재정적, 기술적 지원을 제공해야 한다.
▶ 서비스 전달 • 척수장애인과 관련된 기존 서비스를 발굴하고, 이러한 서비스 접근에 대한 장애물과 역량 구축을 확인하고, 유사한 서비스의 중복 혹은 구축을 피하도록 한다. • 척수장애인을 위한 서비스 전달을 위해 적절한 시스템의 구현을 보장한다. 자원이 풍부한 경우, 특별 서비스에 대한 접근까지도 고려한다. 자원이 충분하지 않은 경우에는, 일반 병원 안에 척수 병동이나 팀을 설치해야 한다. 모든 경우에, 지역 사회로 퇴원 이후 개인의 지속적인 치료를 보장할 수 있는 시스템을 구축해야만 한다. • (i) 입원 전 시기 및 급성기 의료 치료, (ii) 급성기 이후 의료 치료 및 재활, (iii) 건강 유지 관리의 세 단계에 걸쳐 협업을 보장할 수 있는 효과적인 커뮤니케이션과 소개(전원) 시스템을 구축해야 한다. • 척수장애인과 가족들의 서비스 전달에 있어 파트너로서의 참여를 장려한다. 이를 통해, 척수장애인과 가족들
140 척수 손상의 국제적 관점
에게 정보를 제공하고, 의사 결정, 계획, 목표 설정, 모니터링, 평가 과정에 이들을 포함시킨다.
▶ 인적 자원 • 적합한 훈련을 받은 물리 요법 및 재활 의학 전문의, 작업 치료사, 물리치료사, 보철 및 교정 전문가, 언어 및 구술 치료사, 재활 공학자, 휠체어 전문가의 충분한 공급을 보장하기 위한 전문가 훈련에 대한 참여를 홍보한다. • 척수손상과 보조 기기 기술의 모든 영역을 올바르게 포함시킬 수 있도록 기존 교육 커리큘럼을 강화한다. • 재활과 주류 보건 의료 인력을 위한 지속적인 전문 지식 개발 기회를 지원한다. • 포괄적인 범위의 보건 의료 및 재활 서비스 전달 지원을 위해 동료와 같은 비보건 전문가를 활용한다. • 가족뿐만 아니라 척수장애인 당사자도 훈련과 지원을 위한 기회를 제공받을 수 있도록 한다.
▶ 건강과 관련된 기술 • 척수장애인이 보조 기기 기술에 접근할 수 있도록 투명하고 공정한 자격 가이드라인을 수립한다. • 보조 기기 기술 제공을 위한 비용 효율적인 방법을 확인한다. • 개인의 요구에 부합하는, 선택이 가능한, 그리고 나이가 들거나 기타 인생의 다른 상황 변화를 수용할 수 있는 보조 기기 기술 서비스를 보장한다. • 저소득 국가의 지역 보조 기기 기술 생산자가 국제적인 산업 조직과의 협업을 통해 자국의 건강 기술 국가 표준 마련에 기여할 수 있도록 한다.
▶ 건강 정보 • 건강 서비스 내에 데이터 수집을 위한 적절하고 표준화된 건강 정보 시스템을 구축하도록 한다. • 개인과 서비스 분야 모두에 계획 및 결정 사항 고지를 위해 임상, 관리, 결과 데이터와 함께 손상 원인에 대한 데이터를 수집하고 분석한다.
▶ 재정과 적정한 비용 • 척수장애인의 특별 서비스를 위해 충분한 재원을 마련한다. • 적절한 손상 이전과 이후의 보험 계획을 마련해 개인이 과도한 손상 비용 처리에 시달리는 것을 막도록 한다. • 척수장애인이 포괄적이고 비용적으로 적정한 건강 보험에 접근할 수 있도록 보장한다. • 장기간에 걸쳐 척수장애인의 지속적인 서비스를 위해 기술적인, 재정적인 지원을 보장할 수 있는 국제적인 파트너십을 개발한다.
▶ 연구 • 활발한 증거를 기반으로 연구의 이루어질 수 있도록 지원한다. • 척수손상 치료의 새로운 방법에 대한 객관적인 정보를 척수장애인과 가족을 포함한 관련 이해 당사자에게 배포한다. • 보건 의료와 재활 서비스에 대한 접근율을 결정하고, 보다 경제적이며 효과적인 서비스 전달 모델을 확인하기 위해 건강 시스템에 대한 연구를 진행한다. • 증거 기반 가이드라인을 이용할 수 있도록, 그리고 이 가이드라인을 보건 의료 및 재활 인력이 활용할 수 있도록 보장한다.
5. 의료 시스템 강화 141
▶ 참고 문헌 1. De Savigny D, Adam T. Systems thinking for health systems strengthening. Geneva, World Health Organization/Alliance for Health Policy and Systems Research, 2009. 2. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/ publications/2011/9789240685215_eng.pdf, accessed 12 April 2012). 3. Iezzoni LI et al. Mobility impairments and use of screening and preventive services. American Journal of Public Health, 2000, 90:955-961. doi: http://dx.doi.org/10.2105/AJPH.90.6.955 PMID:10846515 4. Iezzoni LI, O’Day BL. More than ramps. A guide to improving health care quality and access for people with disabilities. New York, NY, Oxford University Press, 2006. 5. Cox RJ, Amsters DI, Pershouse KJ. The need for a multidisciplinary outreach service for people with spinal cord injury living in the community. Clinical Rehabilitation, 2001, 15:600-606. doi: http://dx.doi.org/10.1191/0269215501cr453oa PMID:11777090 6. Munce SEP et al. Physician utilization among adults with traumatic spinal cord injury in Ontario: a population-based study. Spinal Cord, 2009, 47:470-476. doi: http://dx.doi.org/10.1038/sc.2008.173 PMID:19153588 7. Dryden DM et al. Utilization of health services following spinal cord injury: a 6-year follow-up study. Spinal Cord, 2004, 42:513-525. doi: http://dx.doi.org/10.1038/sj.sc.3101629 PMID:15249928 8. Laursen B, Helweg-Larsen K. Health service use in adults 20–64 years with traumatic brain injury, spinal cord injury or pelvic fracture. A cohort study with 9-year follow-up. BMJ Open, 2012, 2:e001521. doi: http://dx.doi.org/10.1136/bmjopen-2012-001521 PMID:23103605 9. McColl MA et al. Primary care for people with SCI. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Volume 3. Vancouver, SCIRE, 2010 (pp. 1−24) (http://www.scireproject.com/ rehabilitation-evidence, accessed 25 April 2012). 10. van Loo MA et al. Care needs of persons with long-term spinal cord injury living at home in the Netherlands. Spinal Cord, 2010, 48:423-428. doi: http://dx.doi.org/10.1038/sc.2009.142 PMID:19884896 11. Eide AH et al. Living conditions among people with activity limitation in Zimbabwe: a representative
regional survey. Oslo, SINTEF, 2003. 12. Eide AH, van Rooy G, Loeb ME. Living conditions among people with activity limitations in Namibia:
a representative national study. Oslo, SINTEF, 2003. 13. Loeb ME, Eide AH, editors. Living conditions among people with activity limitations in Malawi: a
national representative study. Oslo, SINTEF, 2004. 14. Eide A, Loeb M. Living conditions among people with activity limitations in Zambia: a national
representative study. Oslo, SINTEF, 2006. 15. Eide AH, Kamaleri Y. Living conditions among people with disabilities in Mozambique: a national
representative study. Oslo, SINTEF, 2009. 16. Cott CA. Client-centred rehabilitation: client perspectives. Disability and Rehabilitation, 2004, 26:1411-1422. doi: http://dx.doi.org/10.1080/09638280400000237 PMID:15764361
142 척수 손상의 국제적 관점
17. Whalley Hammell K. Experience of rehabiltiation following spinal cord injury. Spinal Cord, 2007, 45:260-274. PMID:17310257 18. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. 19. Bingham SC, Beatty PW. Rates of access to assistive equipment and medical rehabilitation services among people with disabilities. Disability and Rehabilitation, 2003, 25:487-490. doi: http://dx.doi.org/ 10.1080/0963828031000071723 PMID:12745944 20. Post MWM et al. Services for spinal cord injured: availability and satisfaction. Spinal Cord, 1997, 35:109-115. doi: http://dx.doi.org/10.1038/sj.sc.3100362 PMID:9044519 21. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/disabilities-convention.htm, accessed 9 May 2012). 22. South-North Centre for Dialogue and Development. Global survey of government actions on the
implementation of the standard rules of the equalization of opportunities for persons with disabilities. Amman, Office of the United Nations Special Rapporteur on Disabilities, 2006:1−141. 23. Dejong G et al. The organization and financing of health services for persons with disabilities. The
Milbank Quarterly, 2002, 80:261-301. doi: http://dx.doi.org/10.1111/1468-0009.t01-1-00004 PMID: 12101873 24. China Disabled Persons’ Federation. Law on the Protection of Persons with Disabilities, 10 April 2008 (http://www.cdpf.org.cn/english/law/content/2008-04/10/content_84949.htm, accessed 20 May 2012). 25. Chen J et al. eds. Inter–province transfer of 10,373 patients injured in Wenchuan earthquake. Journal of Evidence-Based Medicine, 2009, 2:270-276. doi: http://dx.doi.org/10.1111/j.1756-5391. 2009.01053.x PMID:21349026 26. Li Y et al. Evaluation of functional outcomes of physical rehabilitation and medical complications in spinal cord injury victims of the Sichuan earthquake. Journal of Rehabilitation Medicine, 2012, 44:534-540. doi: http://dx.doi.org/10.2340/16501977-1005 PMID:22674233 27. Hu X et al. Analysis of functional status, quality of life and community integration in earthquake survivors with spinal cord injury at hospital discharge and one-year follow-up in the community. Journal of Rehabilitation Medicine, 2012, 44:200-205. doi: http://dx.doi.org/10.2340/16501977-0944 PMID:22367060 28. WHO. Prehospital trauma care systems. Geneva, World Health Organization, 2005. 29. ESCIF. European Spinal Cord Injury Federation (ESCIF) web page. Nottwil, Switzerland, European Spinal Cord Injury Federation, 2012 (http://www.escif.org/, accessed 20 March 2012). 30. Aito S. Complications during the acute phase of traumatic spinal cord lesions. Spinal Cord, 2003, 41:629-635. doi: http://dx.doi.org/10.1038/sj.sc.3101513 PMID:14569264 31. Bagnall AM et al. Spinal fixation surgery for acute traumatic spinal cord injury. Cochrane database of systematic reviews (Online), 2008, (1):CD004725. PMID:18254059 32. Chappell P, Wirz S. Quality of life following spinal cord injury for 20–40 year old males living in Sri
5. 의료 시스템 강화 143
Lanka. Asia Pacific Disability Rehabilitation Journal, 2003, 14:162-178. 33. De Vivo MJ, Krause JS, Lammertse DP. Recent trends in mortality and cause of death among persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1411-1419. doi: http://dx.doi.org/10.1016/S0003-9993(99)90252-6 PMID:10569435 34. Burns AS, Ditunno JF. Establishing prognosis and maximising functional outcomes after spinal cord injury: a review of current and future directions in rehabilitation management. Spine, 2001, 26 Suppl:S137-S145. doi: http://dx.doi.org/10.1097/00007632-200112151-00023 PMID:11805621 35. Fromovich-Amit Y et al. Properties and outcomes of spinal rehabilitation units in four countries.
Spinal Cord, 2009, 47:597-603. doi: http://dx.doi.org/10.1038/sc.2008.178 PMID:19172151 36. Illis LS. The case for specialist units. Spinal Cord, 2004, 42:443-446. doi: http://dx.doi.org/10.1038/ sj.sc.3101633 PMID:15197413 37. Kiekens C et al. Organisation and financing of musculoskeletal and neurological rehabilitation in Belgium: KCE reports 57S. Brussels, Belgian Health Care Knowledge Centre, 2007 (https://kce.fgov.be/sites/default/files/page_documents/d20071023020.pdf, accessed 20 March 2012). 38. New PW. A multidisciplinary consultation team to address the unmet needs of hospitalized spinal cord injury patients. Archives of Neurology, 2010, 67:1074-1076. doi: http://dx.doi.org/10.1001/ archneurol.2010.204 PMID:20837850 39. New PW. Non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? Australian Health Review, 2006, 30:353-361. doi: http://dx.doi.org/10.1071/AH060353 PMID:16879094 40. Priebe MM et al. Spinal cord injury medicine: economic and societal issues in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl 1:S84-S88. doi: http://dx.doi.org/ 10.1016/j.apmr.2006.12.005 PMID:17321854 41. Scivoletto G, Morganti B, Molinari M. Early versus delayed inpatient spinal cord injury rehabilitation: an Italian study. Archives of Physical Medicine and Rehabilitation, 2005, 86:512-516. doi: http://dx.doi.org/10.1016/j.apmr.2004.05.021 PMID:15759237 42. Smith M. Efficacy of specialist versus non-specialist management of spinal cord injury within the UK. Spinal Cord, 2002, 40:10-16. doi: http://dx.doi.org/10.1038/sj.sc.3101226 PMID:11821964 43. New PW et al. International comparison of the organisation of rehabilitation services and systems of care for patients with spinal cord injury. Spinal Cord, 2012, 51:33-39. PMID:22801190 44. van Langeveld SA et al. Comparing content of therapy for people with a spinal cord injury in postacute inpatient rehabilitation in Australia, Norway, and the Netherlands. Physical Therapy, 2011, 91:210-224. doi: http://dx.doi.org/10.2522/ptj.20090417 PMID:21212372 45. Borg J, Lindstrom A, Larsson S. Assistive technologies in developing countries: national and international responsibilities to implement the Convention on the Rights of Persons with Disabilities.
Lancet, 2009, 374:1863-1865. doi: http://dx.doi.org/10.1016/S0140-6736(09)61872-9 PMID:19944867 46. LaVela SL et al. Geographical proximity and health care utilization in veterans with SCI&D in the USA. Social Science & Medicine, 2004, 59:2387-2399. doi: http://dx.doi.org/10.1016/j.socscimed. 2004.06.033 PMID:15450711
144 척수 손상의 국제적 관점
47. Middleton JW et al. Issues and challenges for development of a sustainable service model for people with spinal cord injury living in rural regions. Archives of Physical Medicine and Rehabilitation, 2008, 89:1941-1947. doi: http://dx.doi.org/10.1016/j.apmr.2008.04.011 PMID:18929022 48. Grabois EW et al. Accessibility of primary care physicians’ offices for people with disabilities: and analysis of compliance with the Americans with Disabilities Act. Archives of Family Medicine, 1999, 8:44-51. doi: http://dx.doi.org/10.1001/archfami.8.1.44 PMID:9932071 49. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/oti.228 PMID:17624872 50. Pearlman J et al. Lower-limb prostheses and wheelchairs in low-income countries. IEEE Engineering in Medicine and Biology Magazine, 2008, 27:12-22. doi: http://dx.doi.org/10.1109/ EMB.2007.907372 PMID:18463017 51. Pearlman J et al. Design, development and testing of a low-cost electric powered wheelchair for India. Disability and Rehabilitation. Assistive Technology, 2009, 4:42-57. doi: http://dx.doi.org/10.1080/ 17483100802338440 PMID:19172480 52. Goodwin JS et al. Epidemiology of Medicare abuse: the example of power wheelchairs. Journal of
the American Geriatrics Society, 2007, 55:221-226. doi: http://dx.doi.org/10.1111/j.1532-5415.2007.01063.x PMID:17302658 53. Bergstrom AL, Samuelsson K. Evaluation of manual wheelchairs by individuals with spinal cord injuries. Disability and Rehabilitation. Assistive Technology, 2006, 1:175-182. doi: http://dx.doi.org/ 10.1080/17483100600573230 PMID:19260185 54. May LA et al. Wheelchair back-support options: functional outcomes for persons with recent spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1146-1150. doi: http://dx.doi.org/ 10.1016/j.apmr.2003.08.105 PMID:15241766 55. Kittel A, Di Marco A, Stewart H. Factors influencing the decision to abandon manual wheelchairs for three individuals with a spinal cord injury. Disability and Rehabilitation, 2002, 24:106-114. doi: http://dx.doi.org/10.1080/09638280110066785 PMID:11827144 56. Mukherjee G, Samanta A. Wheelchair charity: a useless benevolence in community-based rehabilitation. Disability and Rehabilitation, 2005, 27:591-596. doi: http://dx.doi.org/10.1080/09638280400018387 PMID:16019868 57. Oderud T et al. User satisfaction survey: an assessment study on wheelchairs in Tanzania. In: Sheldon S, Jacobs NA, eds. Report of a consensus conference on wheelchairs for developing
countries, Bengaluru, India, 6–11 November 2006. Copenhagen, International Society for Prosthetics and Orthotics, 2007 (pp. 112–117). 58. New PW, Simmonds F, Stevermuer T. Comparison of patients managed in specialised spinal rehabilitation units with those managed in non-specialised rehabilitation units. Spinal Cord, 2011, 49:909-916. doi: http://dx.doi.org/10.1038/sc.2011.29 PMID:21468042 59. Divanoglou A, Seiger A, Levi R. Acute management of traumatic spinal cord injury in a Greek and a Swedish region: a prospective, population-based study. Spinal Cord, 2010, 48:477-482. doi:
5. 의료 시스템 강화 145
http://dx.doi.org/10.1038/sc.2009.160 PMID:20029396 60. Deconinck H. The health condition of spinal cord injuries in two Afghan towns. Spinal Cord, 2003, 41:303-309. doi: http://dx.doi.org/10.1038/sj.sc.3101443 PMID:12714994 61. Soopramanien A et al. Using telemedicine to provide post-discharge support for patients with spinal cord injuries. Journal of Telemedicine and Telecare, 2005, 11 Suppl 1:68-70. doi: http://dx.doi.org/ 10.1258/1357633054461633 PMID:16036001 62. Dallolio L et al. Functional and clinical outcomes of telemedicine in patients with spinal cord injury.
Archives of Physical Medicine and Rehabilitation, 2008, 89:2332-2341. doi: http://dx.doi.org/10.1016/ j.apmr.2008.06.012 PMID:19061746 63. Young-Hughes S, Simbarti L. Spinal cord injury/disorder teleconsultation outcome study. Rehabilitation Nursing, 2011, 36:153-158. doi: http://dx.doi.org/10.1002/j.2048-7940.2011.tb00083.x PMID:21721396 64. Burns RB et al. Using telerehabilitation to support assistive technology. Assistive Technology, 1998, 10:126-133. doi: http://dx.doi.org/10.1080/10400435.1998.10131970 PMID:10339280 65. WHO. Increasing access to health workers in remote and rural areas through improved retention. Geneva, World Health Organization, 2010. 66. Warf BC, Wright EJ, Kulkarni AV. Factors affecting survival of infants with myelomeningocele in southeastern Uganda. Journal of Neurosurgery Pediatrics, 2011, 7:127-133. doi: http://dx.doi.org/10.3171/ 2010.11.PEDS10428 PMID:21284456 67. WHO. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. 68. Brown-Triolo DL et al. Consumer perspectives on mobility: implications for neuroprosthesis design.
Journal of Rehabilitation Research and Development, 2002, 39:659-669. PMID:17943668 69. New Zealand Spinal Trust. Resources and information. web site. Christchurch, New Zealand, New Zealand Spinal Trust, 2012 (http://www.nzspinaltrust.org.nz/library_resources_info.asp, accessed 12 April 2012). 70. Sherman JE, DeVinney DJ, Sperling KB. Social support and adjustment after spinal cord injury: influence of past peermentoring experiences and current live-in partner. Rehabilitation Psychology, 2004, 49:140-149. doi: http://dx.doi.org/10.1037/0090-5550.49.2.140 71. Ljungberg I et al. Using peer mentoring for people with spinal cord injury to enhance self efficacy beliefs and prevent medical complications. Journal of Clinical Nursing, 2011, 20:351-358. doi: http://dx.doi.org/10.1111/j.1365-2702.2010.03432.x PMID:21219518 72. Motivation UK. web site, Bristol, United Kingdom, Freedom through mobility, 2012 (http://www.motivation. org.uk,accessed 17 April 2012). 73. Horton R. A new epoch for health professionals’ education. Lancet, 2010, 376:1875-1877. doi: http://dx.doi.org/10.1016/S0140-6736(10)62008-9 PMID:21112621 74. WHO. Everybody’s business: strengthening health systems to improve health outcomes. Geneva, World Health Organization, 2007. 75. Long TM et al. Training needs of pediatric occupational therapists in assistive technology. The
146 척수 손상의 국제적 관점
American Journal of Occupational Therapy, 2007, 61:345-354. doi: http://dx.doi.org/10.5014/ajot. 61.3.345 PMID:17569392 76. Gitlow L, Sanford T. Assistive technology education needs of allied health professionals in a rural state. Journal of Allied Health, 2003, 32:46-51. PMID:12665293 77. Bachman S et al. Provider perceptions of their capacity to offer accessible health care for people with disabilities. Journal of Disability Policy Studies, 2006, 17:130-136. doi: http://dx.doi.org/10.1177/ 10442073060170030101 78. Donnelly C et al. Utilization, access and satisfaction with primary care among people with spinal cord injuries: a comparison of three countries. Spinal Cord, 2007, 45:25-36. doi: http://dx.doi.org/ 10.1038/sj.sc.3101933 PMID:16733520 79. Neri MT, Kroll T. Understanding the consequences of access barriers to health care: experiences of adults with disabilities. Disability and Rehabilitation, 2003, 25:85-96. PMID:12554383 80. Scheer J et al. Access barriers for persons with disabilities: the consumer’s perspective. Journal
of Disability Policy Studies, 2003, 13:221-230. doi: http://dx.doi.org/10.1177/104420730301300404 81. WHO. Framework for action on interprofessional education and collaborative practice. Geneva, World Health Organization, 2010. 82. eLearnSCI. Modules (web site), 2012 (http://www.elearnsci.org/, accessed 20 May 2012). 83. SCIPT. International Network of SCI Physiotherapists web site. International Network of SCI Physiotherapists, 2012 (http://www.scipt.org/, accessed 12 April 2012). 84. ISCoS. International Spinal Cord Society web site, Aylesbury, United Kingdom, 2012 (http://www.iscos. org.uk/, accessed 20 March 2012). 85. Nwankwo OE, Katchy A. Outcome of a 12 week programme for management of the spinal cord injured with participation of patient’s relations at Hilltop Orthopaedic Hospital, Enugu, Nigeria.
Spinal Cord, 2003, 41:129-133. doi: http://dx.doi.org/10.1038/sj.sc.3101410 PMID:12595877 86. Vitality. Vital change for spinal cord injury in Development Nations (web page). London, United Kingdom, 2012 (http://www.vitalchange.org.uk/vitality/, accessed 12 April 2012). 87. WHO. Essential health technologies (web page). Geneva, Switzerland, WHO, 2012 (http://www.who.int/ eht/en/, accessed 12 April 2012). 88. Pearlman J et al. Towards the development of an effective technology transfer model of wheelchairs to developing countries. Disability and Rehabilitation. Assistive Technology, 2006, 1:103-110. doi: http://dx.doi.org/10.1080/09638280500167563 PMID:19256173 89. Jefferds AN et al. Current state of mobility technology provision in less-resourced countries. Physical Medicine and Rehabilitation Clinics of North America, 2010, 21:221-242. doi: http://dx.doi.org/10.1016/j.pmr.2009.07.011 PMID:19951788 90. Copley J, Ziviani J. Barriers to the use of assistive technology for children with multiple disabilities. Occupational Therapy International, 2004, 11:229-243. doi: http://dx.doi.org/10.1002/oti.213 PMID: 15771212 91. Phillips B, Zhao H. Predictors of assistive technology abandonment. Assistive Technology, 1993,
5. 의료 시스템 강화 147
5:36-45. doi: http://dx.doi.org/10.1080/10400435.1993.10132205 PMID:10171664 92. Scherer MJ. Outcomes of assistive technology use on quality of life. Disability and Rehabilitation, 1996, 18:439-448. doi: http://dx.doi.org/10.3109/09638289609165907 PMID:8877302 93. Hunt PC et al. Demographic and socioeconomic factors associated with disparity in wheelchair customizability among people with traumatic spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1859-1864. doi: http://dx.doi.org/10.1016/j.apmr.2004.07.347 PMID:15520982 94. Glumac LK et al. Guatemalan caregivers’ perceptions of receiving and using wheelchairs donated for their children. Pediatric Physical Therapy, 2009, 21:167-175. doi: http://dx.doi.org/10.1097/PEP. 0b013e3181a34a2b PMID:19440126 95. Mobility without Barriers Foundation web site, Burlington, USA, Mobility without Barriers, 2012 (http://www.worldmobility.org/, accessed 17 April 2012). 96. Cooper RA et al. Advances in electric-powered wheelchairs. Topics in Spinal Cord Injury Rehabilitation, 2006, 11:15-29. doi: http://dx.doi.org/10.1310/ACUK-KFYP-ABEQ-A30C 97. Enable NSW. Guidelines for the prescription of a seated wheelchair or mobility scooter for people with a traumatic brain injury or spinal cord injury. Sydney, Enable NSW and Lifetime Care and Support Authority, 2011 (http://www.lifetimecare.nsw.gov.au//Spinal_Cord_Injury.aspx, accessed 27 February 2011). 98. Lindstrom A. Appropriate technologies for assistive devices in low-income counties. In: Hsu JD, Michael JW, Fisk JR. AAOS atlas of orthoses and assistive devices. Philadelphia, PA, Mosby Elsevier, 2008. 99. Romanian Academic Society (SAR). Imobilizat sau integrat? Statul si accesul la echipamente de mobilitate si la servicii de viata independenta. Isolated or included? The state and access to mobility
equipments and independent living services. November 2010, p.1 (http://www.motivation.ro/uploads/ studii%20SAR/Policy%20brief%20Imobilizat%20sau%20integrat%209%20nov%202010.pdf accessed 29 May 2012) 100. MRF. Motivation Romania Foundation. Accessibility map. web site (http://www.accesibil.org, accessed 24 April 2013). 101. MRF. Motivation Romania Foundation, 2012 web site (http://www.motivation.ro/en, accessed 24 April 2013). 102. WHO. Wheelchair service training package. Geneva, World Health Organization, 2013 (http://www.who.int/ disabilities/publications/technology/wheelchair/training/en, accessed 27 April 2013). 103. Assistive Technology Act. United States Congress 2004 (Public Law 108–364) (http://www.ataporg.org/ summaryact.html,accessed 2 August 2011). 104. Beck R. Enable Ireland: action on disability. Dublin, Enable Ireland, 2008 (http://www.enableireland.ie, accessed 20 April 2013). 105. Cripps RA et al. A global map for traumatic spinal cord injury epidemiology: towards a living data repository for injury prevention. Spinal Cord, 2011, 49:493-501. doi: http://dx.doi.org/10.1038/ sc.2010.146 PMID:21102572
148 척수 손상의 국제적 관점
106. Biering-Sørensen F et al. The International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi.org/10.1038/sj.sc.3101930 PMID:16955072 107. Cardenas DD et al. Etiology and incidence of re-hospitalization after traumatic spinal cord injury: a multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2004, 85:1757-1763. doi: http://dx.doi.org/10.1016/j.apmr.2004.03.016 PMID:15520970 108. De Vivo M et al. International spinal cord injury core data set. Spinal Cord, 2006, 44:535-540. doi: http://dx.doi.org/10.1038/sj.sc.3101958 PMID:16955073 109. Kreuger H. Spinal cord injury: progress in care and outcomes in the last 25 years. Vancouver, The Rick Hansen Institute, 2011. 110. Stover SL et al. History, implementation and current status of the National Spinal Cord Injury Database. Archives of Physical Medicine and Rehabilitation, 1999, 80:1365-1371. doi: http://dx.doi.org/10.1016/S0003-9993(99)90246-0 PMID:10569429 111. Bates I et al. Indicators of sustainable capacity building for health research: analysis of four African case studies. Health Research Policy and Systems, 2011, 9:14. doi: http://dx.doi.org/10.1186/1478-4505-9-14 PMID:21443780 112. Tate DG, Boninger ML, Jackson AB. Future directions for spinal cord injury research: recent developments and model systems contributions. Archives of Physical Medicine and Rehabilitation, 2011, 92:509-515. doi: http://dx.doi.org/10.1016/j.apmr.2010.07.243 PMID:21353833 113. Whiteneck G, Gassaway J. SCIRehab: a model for rehabilitation research using comprehensive person, process and outcome data. Disability and Rehabilitation, 2010, 32:1035-1042. doi: http://dx.doi.org/10.3109/09638281003775584 PMID:20392171 114. Whiteneck GG et al. Inpatient and postdischarge rehabilitation services provided in the first year after spinal cord injury: findings from the SCIRehab study. Archives of Physical Medicine and Rehabilitation, 2011, 92:361-368. doi: http://dx.doi.org/10.1016/j.apmr.2010.07.241 PMID:21353820 115. Yazdizadeh B, Majdzadeh R, Salmasian H. Systematic review of methods for evaluating healthcare research economic impact. Health Research Policy and Systems, 2010, 8:6. doi: http://dx.doi.org/10.1186/1478-4505-8-6 PMID:20196839 116. Gertler P et al. Impact evaluation in practice. Washington, DC, The International Bank for Reconstruction and Development/The World Bank, 2011. 117. Whiteneck GG et al. Quantifying environmental factors: a measure of physical, attitudinal, service, productivity and policy barriers. Archives of Physical Medicine and Rehabilitation, 2004, 85:1324-1335. doi: http://dx.doi.org/10.1016/j.apmr.2003.09.027 PMID:15295760 118. Craig A et al. The efficacy and benefits of environmental control systems for the severely disabled.
Medical Science Monitor, 2005, 11:RA32-RA39. PMID:15614204 119. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:1134-1137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 120. Field MJ, Jette AM. The future of disability in America. Washington, DC, The National Academies Press, 2007.
5. 의료 시스템 강화 149
121. May-Teerink T. A survey of rehabilitative services and people coping with physical disabilities in Uganda, East Africa. International Journal of Rehabilitation Research, 1999, 22:311-316. doi: http://dx.doi.org/10.1097/00004356-199912000-00008 PMID:10669981 122. Swiss Paraplegic Foundation (http://www.paraplegie.ch/en/pub/gv/become_a_member.cfm,accessed 24 April 2013). 123. ACC. Accident Compensation Corporation web site. Wellington, New Zealand, Accident Compensation Corporation, 2012 (http://www.acc.co.nz, accessed 17 April 2012). 124. NDIS. National Disability Insurance Scheme web site, Canberra, Australia, NDIS, 2012 (http://www.ndis.gov.au/, accessed 17 April 2012). 125. Dicianno BE et al. RESNA position on the application of tilt, recline, and elevating leg rests for wheelchairs. Assistive Technology, 2009, 21:13-22. doi: http://dx.doi.org/10.1080/10400430902945769 PMID:19719059 126. Crespo LM, Reinkensmeyer DJ. Effect of robotic guidance on motor learning of a timing task. Paper presented at BioRob 2008. Second IEEE, RAS & EMBS International Conference on Biomedical Robotics and Biomechatronics, 19−22 October 2008 (http://ieeexplore.ieee.org/ xpl/mostRecentIssue.jsp?punumber=4753967, accessed 12 April 2012). 127. Atkins MS et al. Mobile arm supports: evidence-based benefits and criteria for use. The Journal of Spinal Cord Medicine, 2008, 31:388-393. PMID:18959356 128. Chin CA. Integrated electromyogram and eye-gaze tracking cursor control system for computer users with motor disabilities. Journal of Rehabilitation Research and Development, 2008, 45:161-174. doi: http://dx.doi.org/10.1682/JRRD.2007.03.0050 PMID:18566935 129. Sesin A et al. Adaptive eye-gaze tracking using neural-network-based user profiles to assist people with motor disability. Journal of Rehabilitation Research and Development, 2008, 45:801-818. doi: http://dx.doi.org/10.1682/JRRD.2007.05.0075 PMID:19009467 130. Amador MJ, Guest JD. An appraisal of ongoing experimental procedures in human spinal cord injury. Journal of Neurologic Physical Therapy; JNPT, 2005, 29:70-86. PMID:16386164 131. Fehlings MG, Baptiste D. Current status of clinical trials for acute spinal cord injury. Injury, 2005, 36 Suppl 2:B113-B122. doi: http://dx.doi.org/10.1016/j.injury.2005.06.022 PMID:15993112 132. Baptiste DC, Fehlings M. Update on the treatment of spinal cord injury. Progress in Brain Research, 2007, 161:217-233. doi: http://dx.doi.org/10.1016/S0079-6123(06)61015-7 PMID:17618980 133. Thuret S, Moon LD, Gage F. Therapeutic interventions after spinal cord injury. Nature Reviews. Neuroscience, 2006, 7:628-643. doi: http://dx.doi.org/10.1038/nrn1955 PMID:16858391 134. Regenberg AC et al. Medicine on the fringe: stem cell-based interventions in advance of evidence. Stem Cells (Dayton, Ohio), 2009, 27:2312-2319. doi: http://dx.doi.org/10.1002/stem.132 PMID: 19544406 135. Ryan KA et al. Tracking the rise of stem cell tourism. Regenerative Medicine, 2010, 5:27-33. doi: http://dx.doi.org/10.2217/rme.09.70 PMID:20017692 136. Song P. Biotech pilgrims and the transnational quest for stem cell cures. Medical Anthropology,
150 척수 손상의 국제적 관점
2010, 29:384-402. doi: http://dx.doi.org/10.1080/01459740.2010.501317 PMID:21082484 137. Devereaux M, Loring JF. Growth of an industry: how U.S. scientists and clinicians have enabled stem cell tourism. The American Journal of Bioethics, 2010, 10:45-46. doi: http://dx.doi.org/ 10.1080/15265161003769005 PMID:20461650 138. Dobkin BH, Curt A, Guest J. Cellular transplants in China: observational study from the largest human experiment in chronic spinal cord injury. Neurorehabilitation and Neural Repair, 2006, 20:5-13. doi: http://dx.doi.org/10.1177/1545968305284675 PMID:16467274 139. Huang H et al. Influence factors for functional improvement after olfactory ensheathing cell transplantation for chronic spinal cord injury. (Chinese Journal of Reparative and Reconstructive Surgery) Zhongguo Xiu Fu Chong Jian Wai Ke Za Zhi, 2006, 20:434-438. PMID:16683451 140. Amariglio N et al. Donor-derived brain tumor following neural stem cell transplantation in an ataxia telangiectasia patient. PLoS Medicine, 2009, 6:e1000029. doi: http://dx.doi.org/10.1371/ journal.pmed.1000029 PMID:19226183 141. Huang H et al. Olfactory ensheathing cells transplantation for central nervous system diseases in 1,255 patients. (Chinese Journal of Reparative and Reconstructive Surgery)Zhongguo Xiu Fu Chong Jian Wai Ke Za Zhi, 2009, 23:14-20. PMID:19192871 142. Cyranoski D. Korean deaths spark inquiry. Nature, 2010, 468:485. doi: http://dx.doi.org/10.1038/ 468485a PMID:21107396 143. Dolan T. A three-pronged management strategy to stem cell tourism. The American Journal of
Bioethics, 2010, 10:43-45. doi: http://dx.doi.org/10.1080/15265161003754056 PMID:20461649 144. Hyun I. Allowing innovative stem cell-based therapies outside of clinical trials: ethical and policy challenges. The Journal of Law, Medicine & Ethics, 2010, 38:277-285. doi: http://dx.doi.org/10.1111/ j.1748-720X.2010.00488.x PMID:20579251 145. Lindvall O, Hyun I. Medical innovation versus stem cell tourism. Science, 2009, 324:1664-1665. doi: http://dx.doi.org/10.1126/science.1171749 PMID:19556497 146. Caplan A, Levine B. Hope, hype and help: ethically assessing the growing market in stem cell therapies. The American Journal of Bioethics, 2010, 10:24-25. doi: http://dx.doi.org/10.1080/ 15265161.2010.481980 PMID:20461638 147. Fuhrer MJ. Assistive technology outcomes research: challenges met and yet unmet. American Journal of Physical Medicine & Rehabilitation, 2001, 80:528-535. doi: http://dx.doi.org/10.1097/ 00002060-200107000-00013 PMID:11421522 148. Reid D, Lailberte-Rudman D, Hebert D. Impact of wheeled seated mobility devices on adult users’ and their caregivers’ occupational performance: a critical literature review. Canadian Journal of
Occupational Therapy, Revue Canadienne d’Ergotherapie, 2002, 69:261-280. doi: http://dx.doi.org/ 10.1177/000841740206900503 PMID:12501452
5. 의료 시스템 강화 151
Attitudes, relationships and adjustment
6. 태도, 관계, 적응
“휠체어를 타는 사람으로서, 우리는 종종 비장애인들 사이에 어떤 호기심을 불러일으킨다. 즉, 많은 사람들은 왜 ‘정상적’ 으로 보이는 사람이 휠체어에 앉아 있는지 궁금해 한다. 그리고 사람들은 ‘조만간 회복되시길 바랍니다’라는 말을 함으로써 대화를 시작할 기회를 얻게 되면, 바로 뒤이어서 ‘사고가 있었나요?’라고 질문한다. 휠체어에 앉은 사람의 이야기를 듣고 나서는, 이 호기심 많던 사람은 정상적으로 보이는 사람이 정말로 일어설 수 없다는 사실을 알게 되고, 진심으로 슬픔을 느낀 후, 뒤돌아서 자기 길을 간다. 그 사람은 떠나면서, 자신이 이런 ‘고통’을 겪지 않음을 감사히 여길 것이다. 빠르게 걸어가면서 그 사람은 ‘인생에 있어 가장 두려운 건 장애인이 되는 일이야.’라고 생각할 수도 있다. 그러나 그 사람이 생각했던 악몽의 순간이 휠체어 사용자에게는 그리 쉽지 않지만 행복한, 평범한 한 일상의 장면일 수도 있다.” (불렌트, 터키)
“그들의 근거 없는 통념과 믿음에서 비롯된 태도가 나를 매우 비참하게 만들었다. 나의 척수손상은 사고로 발생했다. 사모아는 단지 8%의 국민들만이 교육을 받고 있다. 그러다 보니 그저 앉아 있는 사람은 ‘시간을 낭비’하는 사람으로 보일 수도 있다. 특히 내 연령대라면 가족을 위해 열심히 일을 해야 하지만, 나는 그렇게 하지 못한다. 그래서 나는 쓸모가 없는 사람일 수도 있다. 사모아에서는 개인 돌봄 제공자를 구하는 것도 매우 어렵다. 주로 아내가 돌봄 제공자가 되고 어머니가 함께 계신다면 정말 운이 좋은 경우이다. 아내와 어머니가 없다면, 병원에만 머물러야 할 것이다. 가족들은 집으로 데려가려고 하지 않을 것이다. 돌봄에 대한 지식이 전혀 없으며 필요한 장비도 전혀 없기 때문이다. 나를 정말로 사랑하는 아내가 함께 있으니, 나는 운이 좋은 편이다.” (패네, 사모아)
“나는 매우 어린 나이에 흉수 10번 손상을 입었고, 이후에 휠체어를 타는 것은 내 인생의 자연스런 부분이 되었다. 미국의 농촌 지역에서 성장하면서, 나는 편안함을 느꼈고 매우 긍정적인 자기 주체성을 가지게 되었다. 그러나 내가 배우자를 얻을 수 있을지에 대해서는 확신할 수 없었고, 내 친구들만큼 데이트를 하지 못하는 경우에는 종종 좌절감도 느꼈다. 지금 나는 사랑에 빠졌으며, 안정적인 관계를 맺고 있고, 조만간 결혼도 할 계획이다. 되돌아보면, 내가 정말로 부딪혔던 유일한 제약은 데이트와 성적 능력에 대한 자신감 결여로 인해 나 스스로가 만든 것이었다. 장애 여성으로서, 나는 심지어 더 개방적이고, 앞으로 나서고, 솔직하고, 남성에 대해 자신감을 가졌어야 했다. 왜냐하면 이런 과정에서 ‘이 일이 어떻게 될까?’ 혹은 ‘섹스를 할 수 있을까?’와 같은 많은 내재적인 질문들이 떠올랐기 때문이다. 일단 이러한 질문에 대한 답을 구하게 되면, 이후에는 일반적인 관계에서처럼 상황은 자연스럽게 흘러가게 된다.” (쉐리, 미국)
“나는 다른 업무로 주당 25시간의 활동 보조인을 배정받았다. 나와 소통이 잘되며, 그래서 내가 여행을 갈 때 함께 가자고 요청할 수 있는 소수의 전문적인 활동 보조인들이 있다. 나는 항상 계획을 잘 세우며, 여행에서도 즐거운 코스에 시간을 할애하기 때문에 내 활동 보조인은 나와 함께 여행할 때 긍정적인 경험을 하게 될 것이다. 나는 이런 특별한 ‘활동 보조인’과 함께할 수 있어 정말로 행복하다.” (켈, 노르웨이)
6 태도, 관계, 적응 가족 구성원, 친구, 보건 의료 제공자, 이웃 그리고 낯선 사람들의 태도와 행동은 장해 요인과 촉진 인자로써 척수손상 장애인들의 삶에 영향을 주는 환경적 요인에 기여하고 있다(1). 동시에, 자신에 대한 믿음과 인식과 관련하여 척수장애인이 자신의 상황에 적응할 수 있는 정도는, 또한 사회적 네트 워크 안에서 타인의 태도와 행동에도 영향을 미칠 수 있다(2). 많은 척수장애인에게 있어서, 가족, 친구, 이웃, 동료, 그리고 서비스 제공자들의 존경과 수용의 표현 – 특히 불안과 두려움을 가라앉혀 주는 사회적 반응 – 은 척수 손상에 대한 적응을 가능하게 해 줄 수 있는 강력한 긍정적 힘이다(3). 다른 장애인의 동료 지원뿐 아니라 비장애인이 제공하는 보조와 지지는 많은 장애인들에게 매우 중요한 지원으로 작용한다.
장애인 권리 협약 3조(일반 원칙)는 고유의 존엄성에 대한 존중, 개인의 자율성, 다름에 대한 존중, 인간의 다양성 및 인류의 한 부분으로서 장애인을 인정하는 것의 중요성을 강조하고 있다(4). 태도와 사회적 관계의 논의와 관련된 권리 협약의 특정 조항들은 다음과 같다. • 8조: 인식 제고 • 19조: 독립적으로 살아가는 것과 지역 사회의 일원이 되는 것 • 23조: 가정과 가족에 대한 존중 • 30조: 문화생활, 레크리에이션, 여가 생활 및 체육 활동에 대한 참여
제26조, 적응(habilitation) 및 재활(rehabilitation)과 같은 다른 조항들도 긍정적 관계를 증진시키는 데 중요한 촉진 요인임을 강조하고 있다. 이 장에서는 척수장애인의 삶을 형태 짓는 태도와 관계에 대해서 살펴볼 것이다. 보건 의료 전문 인력의 태도뿐 아니라 더 넓은 지역 사회 내 통합에 대해서도 알아볼 것이다. 또한 이 장에서는 정식 보건 의료 시설과 가정에서의 보건 의료, 가족과 친구로부터 제공되는 비공식적 무급 건강 관리, 이용자가 선택하는 유급 활동 보조 등 보조와 지원의 제공에 대해서도 다룰 것이다. 다음으로, 가족 관계를 다루는 섹션에서는 부모, 배우자, 자녀들과의 관계와 지지에 대해 살펴볼 것이다. 마지막으로 이 장은 한 개인이 어떻게 척수손상에 대해 적응하고 긍정적인 자존감을 키우는지를 알아볼 것이다. 각각의 섹션에서는 문제를 소개하고 이후 그 문제 상황을 개선시킬 수 있는 개입 방법의 사례와 근거가 제시될 것이다.
6. 태도, 관계, 적응 155
태도
▶ 광범위한 지역 사회의 태도 장애에 대한 문화적인 표현들과 태도는 장애인의 삶 속의 모든 사회적 상호 작용에 영향을 미친다 (5). 쳐다보기, 무시하기, 회피하기, 고정 관념화 하기, 따돌리기 등은 부정적 태도의 대표적인 행동 이다(6-8). 태도와 관련된 장애물은 물리적 장애물만큼 금지되어야 한다(9). 많은 비장애인들은 장애인의 삶의 현실에 대해 무지하다. 대신에 그들의 태도는 고정적인 관념과 부정적인 이미지에 기반을 두고 있다(10, 11). 어떤 문화권에서는 장애가 마법, 원죄, 부정적 카르마와 관련된 경우도 있지만, 전형적으로 장애는 의존성과 수동성과 연관되어 있다(12). 심지어 비장애인들의 이러한 편견을 피하더라도, 여전히 장애는 양질의 삶과는 양립할 수 없는 것으로 여겨지고 있다. 예를 들어, 종종 일반 대중들은 사지마비를 죽음보다 더한 것으로 바라보는 경우가 많다(13, 14). 이분척 추증 아동이 있는 가정을 대상으로 진행한 케냐 연구에서는 40가족 중 6가족만이 지역 사회의 도움을 받고 있었고, 7가족은 소외당했으며 9가족은 장애 아동의 출생으로 인해 자신들이 저주를 받은 듯한 느낌을 받았다고 응답했다(15). 방글라데시에서는 심지어 가족 구성원들조차 자신들의 장애인 친척에 대해 부정적인 태도와 낮은 기대감을 가지고 있는 것으로 나타났다(16). 타인의 태도는 또한 긍정적인 힘이 될 수도 있다. 미국에서 실시된 이동성 장애가 있는 사람들의 장해 요인과 촉진 요인에 대한 연구에서, 가족, 친구, 그리고 활동 보조인의 태도가 회복에 커다란 긍정적인 영향을 주었고, 반면에 의사와 치료사의 태도는 보건 의료 서비스를 받는 데 있어 장해 요인으로 인식하고 있는 것으로 나타났다(17). 그러나 이도 손상의 정도에 따라서는 달라질 수도 있다. 캐나다에서 시행한 연구에 따르면, 건강 상태가 양호한 척수장애인 중 3분의 2는 가족과 친구의 태도를 자신들의 사회 참여의 촉진 요인으로 보았으며, 반면에 건강 상태가 좋지 않은 척수장애인 중 25%는 가족과 친구의 태도를 사회 참여의 장애물로 언급한 것으로 나타났다(18). 사람들은 척수손상 장애인에 대한 긍정적인 태도가 무엇인지 잘 인지하지 못하고 있을 수도 있다 (19). 예를 들어, 그들은 척수손상 장애인이 특별한 대우와 그에 맞는 대응을 원한다고 추측할 수도 있다. 그 외에도, 사람들은 자립의 의미를 척수장애인이 자신의 삶을 통제하는 것이 아닌, 스스로 할 수 있는 일들에 관한 것이라 생각할 수도 있다. 척수손상 장애인에 대한 설문조사들에서 이들이 보건 의료 종사자나 일반 대중들보다 자신들의 삶을 더 긍정적으로 인식하고 있음이 발견되었다 (19-21).
156 척수 손상의 국제적 관점
장해 요인에 대한 대처(Addressing Barriers) 장애인과의 접촉을 통해 태도가 개선될 수 있다(22). 일반적으로 척수장애인이 일반 학교에 많이 다니고, 대중교통을 이용해 많이 여행을 가고, 일반적 동네에 살고, 일반 직장에서 일하는 경우가 많을수록, 비장애 아동과 어른은 장애인을 사회 다양성의 한 부분으로 이해하고 존중하는 법을 더 잘 배울 수 있게 된다 (23). 일반 가정, 술집, 식당, 문화 공간에 대한 접근성이 더욱 개선될 때, 장애인의 사회 모임 참여와 주류 레저 활동 참여가 가능해질 것이고, 이는 태도의 개선으로 이어지게 될 것이다. 박스 6.1. 아이티에서 태도 변화 한편으로는 2010년 1월 10일 지진 발생 이후 척수손상 환자 지원을 위해 필요로 했던 초기 의학적 치료가 상당히 커다란 과제였지만, 아마도 아이티의 재활에 있어 가장 큰 과제는 사회로의 재통합 문제였다. 장애인이 종종 코코바이(cocobai) – 아이티 프랑스어로 ‘가치 없다’는 의미 – 로 불리는 나라에서, 척수손상 센터는 사람들의 장애인에 대한 태도 변화와 성공적인 재통합 프로그램 개발에 있어 어려운 과제에 직면했었다. 지진 발생 이후, 아이티 병원(Haiti Hospital Appea: HHA)에서 진행된 국제 기능 장애 건강 분류(International Classification of Functioning, Disability and Health: ICF) 연구에 따르면, 거의 모든 환자들이 기기와 교통수단을 이용해 이동 하는 데 심각한 문제가 있음을 보여 주었다. 병원 주변과 기존 교통 서비스 수단에 휠체어 접근이 불가능했기 때문에 환경이 이러한 제약 요소에 큰 영향을 미쳤다(30). 그러나 대부분의 제안 사항에서 초점이 맞춰졌던 인프라의 재통합보다는, 아이티 같은 국가의 가장 큰 난제는 장애와 관련해 문화적으로 낙인을 찍는 것이었다. 아이티의 62가구를 대상으로 조사한 결과, 45가구가 아이의 장애로 인해 박해와 차별을 겪었으며, 39가구는 일상적으로 이런 상황을 겪고 있다고 응답했다(31). 아이티에서는 종종 장애의 기원을 초자연적인 것으로 간주하기 때문에, 문화적, 종교적 믿음이 이런 차별의 원인이 되고 있다. 심지어는 흉작일 때도 장애 아동에게 비난이 돌아간다(32). 일반적으로 많은 비용이 소요되는 국가 인프라의 변화를 NGO가 진행하는 것은 쉽지 않다. 반면에 비교적 단기간에 급속한 변화를 달성하기 위한 비용 효율적인 권익 옹호 노력은 가능할 수도 있다. HHA에서는 장애 통합 촉진을 위해 스포츠를 활용하는 캠페인을 출범시켰다. 스포츠의 대중적 인기와 스포츠의 물리적, 사회적, 경제적 개발의 혜택이 장애인의 통합과 웰빙 촉진을 위한 이상적인 도구로 작용하였다 (33). HHA의 전략은 대중적 스포츠와 전문적인 패럴림픽 종목 개발에 초점을 맞추었다. 이스트반 팝(Istvan Papp: 유엔 북아이티 지역 사회 폭력 근절팀장)에 따르면, 레온G(Leon G)는 2010년 지진으로 아내와 8명의 아이를 잃었을 뿐만 아니라 자신에게는 척수손상이 발생하였다. 그러나 스포츠를 통해 장애를 극복하겠다는 그의 결심은 폭넓은 관심을 불러일으켰고, 카프아이시앵(Cap-Haitien: 아이티 제2의 도시)의 많은 주민들에게 희망, 용기, 비전을 가져다주었으며, 장애에 대한 사회적 낙인을 없애는 데 도움을 주었다. 자신이 사는 지역에서 레온의 핸드 사이클이 유명해짐에 따라 비장애인의 인식 개선 기회가 되었을 뿐만 아니라, 2011년 파라팬암 게임(1999년 멕시코에서 처음 개최된 이후 4년마다 열리는 장애인을 위한 멀티 스포츠 게임 - 역자 주)에서 최초의 핸드 사이클 선수로 참가한 레온의 성과는 장애에 대한 편견을 완벽하게 불식시키는 계기가 되었다. 레온은 아이티와 국제적인 방송에 모습을 계속 드러냈고, 대중 행사에서 발언을 하고, 2012년 패럴림픽 경기를 아이티 TV를 통해 최초로 중계하려는 노력에도 힘을 보탰다. 레온의 이야기는 스포츠가 어떻게 언어적, 문화적, 사회적 장애물을 극복할 수 있는지 보여 주었으며, 기존의 전통적인 방법으로는 쉽지 않은 재통합에 있어서 통합과 적응의 뛰어난 전략적 플랫폼을 제시하고 있다(33). 물리적 인프라 변화의 중요성은 의심할 필요가 없지만 , 장애인의 요구에 적절하게 대응하기 이전에 국가는 우선 장애인의 요구에 대한 평가, 이해, 그리고 관심을 갖는 것이 필요하다. 일단 장애인이 사회 속에서 동등하게 대우받는 다면, 장애인 인권 증진도 쉽게 달성될 수 있을 것이다. 레온의 경험은 한 사람의 개인적 스포츠 성과의 이야기가 사회 안에서 관계와 태도를 얼마나 획기적으로 향상시킬 수 있는지를 보여 주는 하나의 예이다.
6. 태도, 관계, 적응 157
서비스 제공자에게 진행되는 장애 평등·인식 개선 훈련과 같은 목표 지향적 개입 방법은 부정적인 태도를 몰아내고 장애에 대한 이해를 높일 수 있다(24, 25). 장애인 롤 모델이나 지지자의 방문과 같은 교실 참여 프로그램은 장애에 대한 아동의 인식 개선 및 이해를 고취시킬 수 있다(26-28). 언론을 통해 보다 다양하고 긍정적인 장애인 롤 모델을 소개하는 것도 태도에 영향을 미칠 수 있으며 (29), 개인적인 인식 개선 노력은 박스 6.1에서 보여지는 아이티의 사례처럼 주요 이벤트의 언론 노출을 통해 좋은 효과를 거둘 수 있다. 장애인 권리 협약의 이해를 높이기 위한 정부의 행동은 장애에 대한 부정적인 태도를 떨쳐내고 장애를 받아들이는 태도를 고취시킬 수 있을 것이다.
▶ 의료 전문가의 태도 의료 전문가는 가끔 장애인에게 편견을 갖거나 장애인에 대한 존경심 없이 그들을 대하는 경우가 있다(34). 예를 들어, 한 연구에 따르면, 프랑스 남서부 지역의 일반 의사 중 8.2%가 신체 장애인에 대해 불편한 감정을 느끼고 있으며, 이러한 태도는 경험 부족, 장애인에 대한 의료 훈련 부족, 상담 시간의 부족 등과 관련이 있는 것으로 나타났다 (35). 호주 연구에서는 작업 치료를 전공하는 학생들의 태도가 경영학 전공 학생들의 태도와 별로 다르지 않다는 점이 확인되었다(23). 다른 연구에서는 급성기 척수손상 치료를 담당하는 간호사들이 척수손상 재활이나 척수장애인을 위해 일하는 간호사들보다(36) 척수손상 노인 장애인에 대해 부정적 태도가 더 심하다는 것이 밝혀졌다. 아마도 이 간호사들이 항상 위중한 상태의 손이 많이 가는 환자를 돌본 경험이 있었기 때문일 것이다. 이런 현상은 응급 치료 인력 (37)과 몇몇 재활 인력 (19) 사이에서도 발견되는 부정적인 태도를 설명할 수 있을 것이다. 이런 연구들은 주로 고소득 국가에서 진행되었다. 따라서, 저·중소득 국가의 의료 전문가의 태도에 대해서는 알려진 내용이 많지 않다 (38). 그리고 세계 건강 조사 (World Health Survey)에 따르면, 비장애인과 비교했을 때, 장애인은 자신들의 요구에 부합하지 않는 의료 보건 인력의 기술과 장비를 제공받을 확률이 2배, 치료를 거부당할 확률이 3배, 미진한 치료를 받을 확률이 4배 이상 높은 것으로 나타났다(39).
장해 요인에 대한 대처 척수장애인들의 회복, 웰빙, 자율성, 희망을 위해서는 지지적인 태도를 가진 보건 의료 전문가들의 역할이 매우 중요한 것으로 여겨지고 있다(40). 예를 들어, 장애와 재활에 대한 환자의 인식 측면 에서는 치료 방법에 대한 교육보다도 의사들의 긍정적인 태도가 더 많은 영향을 미칠 수 있음이 밝혀졌다(41). 그러므로 보건 의료 전문가들이 장애에 대한 긍정적인 태도와 보다 나은 이해를 갖도록 도와주는 것이 중요하다. 보건 의료 전문가들의 태도 개선을 위한 노력에는 장애인이나 장애인 단체와의 접촉을 포함해 학부
158 척수 손상의 국제적 관점
교육 과정에서 장애인의 인권이나 건강 요구와 관련된 내용의 커리큘럼을 포함하는 등의 방법이 있다(23, 42). 특히 워크숍과 참여 위주의 활동들이 강의보다 더 폭넓고 장기적인 영향을 미칠 수 있다(25). 근무 현장에서의 훈련과 다른 형태의 지속적 교육은 자격을 갖춘 이후에도 의사, 간호사, 기타 전문가들의 생각에 영향을 줄 수 있도록 도울 수 있다(43). 장애를 가진 보건 의료 전문가들의 훈련 및 모집에 대한 장려도 장애인을 항상 환자로 여기는 만연한 고정 관념을 극복하는 데 도움이 될 수 있다(44).
보조와 지지
보조와 지지라는 주제는 장애인의 일상생활 활동을 보조하는 비의료 인력에 대해 다루게 된다. 이에 대한 요구는 가정, 학교, 직장, 이동이나 여행을 하는 과정에서, 또는 사회와 지역 사회 활동 속에서 발생할 수 있다. 환경적 장애물은 보통 보조에 대한 요구를 증가시키고, 접근성의 향상과 다양한 보조 기기의 제공은 보조에 대한 요구를 일반적으로 감소시킨다. 특히 접근성이 확보되지 않은 상황에서 보조를 받지 못한다면 사람들은 집 안에서만 지내거나 심지어는 집 안에서도 하나의 방 안으로 활동이 제한될 수 있다. 대개 사지 마비 장애인과 같이 보다 복잡한 요구를 가진 사람들은 하지마비 장애인 보다 더 많은 보조가 필요할 것이다.
세계 장애 보고서(World report on disability)에서 논의된 것처럼 (39), 일반적으로 모든 장애인의 보조와 지지에 대한 대부분의 요구는 무급 비공식 돌봄 제공자로 일컬어지기도 하는 가족과 친구들에 의해 충족되고 있다. 고소득 국가에서 혹은 저소득 국가에서 고소득을 올리는 몇몇 개인의 경우에는, 유급 지원 이용이 가능할 수도 있을 것이다. 이런 지원은 국가, 자원봉사 조직, 혹은 상업적 방식으로 제공이 될 수도 있다. 새롭고, 잠재적으로 매우 고무적인 현상은 아래의 활동 보조인 섹션에서 논의가 될 것이다.
▶ 비공식적 돌봄 일반적으로 가족 구성원으로 이루어지는 비공식적인 돌봄 제공자에 대한 연구들은 수행되는 활동의 형태, 가족의 건강에 미치는 영향, 관계에 미치는 영향을 살펴보는 것이 주를 이룬다(45, 46). 척수 손상이 있는 성인은 대부분 남성이며, 이들의 돌봄 제공자는 여성일 가능성이 높다. 예를 들어, 브라질의 한 연구에서는 외상성 하지마비 장애인의 돌봄 제공자 중 80% 이상이 여성이며, 대체로 아내나 혹은 가끔 누이가 그 역할을 수행하고, 절반 이상의 돌봄 제공자가 홀로 일을 수행하는 것으로
6. 태도, 관계, 적응 159
나타났다(47). 다른 중요한 비공식 돌봄 제공자 그룹은 이분척추증이나 중도 척수장애를 가진 아동 이나 청년의 부모들이다. 그리고 이 경우에도 대부분 여성이 돌봄 제공자의 일을 담당하고 있다. 가족과 친구들은 필요한 보조를 제공해 주기에는 스스로가 미숙하고 불충분하다고 느낄 수도 있다. 또 다른 연구에서는 돌봄 제공자에 대한 지원 부족과 고립의 문제를 발견하기도 하였다(48). 요구의 수준에 따라, 척수장애인에 대한 지원은 신체적·감정적으로 어려운 일이 될 수 있다. 이는 돌봄 제 공자에게 심리학적으로 큰 영향을 끼칠 수 있고, 제공되는 돌봄에도 영향을 미칠 수 있다. 예를 들어, 돌봄 역할을 전적으로 수행하는 배우자들은 척수손상 당사자보다 스트레스와 우울 증상을 더 많이 보일 수도 있다(46). 네덜란드에서 시행한 바델 지수(Barthel Index)를 사용한 연구에서는 척수장애인 파트너가 돌봄에 대해 느끼는 부담감은 중증 장애인인 경우 거의 24.8%로, 경증 장애인 파트너의 3.9%에 비해 상당히 높게 나타났으며, 따라서 돌봄 제공자의 극심한 피로를 예방하는 것이 척수장애인 보건 의료 서비스의 한 부분이 되어야 한다고 언급하고 있다(49). 브라질의 한 연구 에서는 삶의 질을 측정하는 SF-36 조사에서 하지마비 장애인의 돌봄 제공자가 특히 신체 통증과 활력 영역에서 , 낮은 점수를 기록한 것으로 나타났다 (47). 피지에서 시행한 연구에서는 척수 장애인의 돌봄 제공자가 느끼는 부담과 심리적 고통이 상당한 것으로 보고되었다(50). 피지에서는 유급의 돌봄 지원이 거의 전무하며 가족 구성원이 척수장애인 보조를 주로 담당하고 있다. 케냐 에서 진행된, 이분척추증 가족의 삶의 질에 대한 소규모 연구에서는 부모들에게 가해지는 만연한 사회적, 재정적, 감정적, 정신적 영향들을 발견하였고, 또한 이러한 스트레스는 자녀가 요실금을 동 반한 경우에 더 심해지는 것을 확인하였다(15).
장해 요인에 대한 대처 사회적 지지는 초기 재활 치료 완료 후 가정과 지역 사회로 돌아온 성인 척수장애인의 삶에 있어 매우 중요한 핵심적인 요소이다. 특히 척수장애인들이 재활 시설을 떠나기 전에, 이들이 지역 사회로 복귀하여 생활할 수 있도록 해 줄 비공식적 활동 보조 네트워크 제공을 위한 전략과 프로그램이 필요하다(51). 입원 치료 기간에는 환자뿐만 아니라 가족 또한 교육 활동에 참여해야 하며 (52), 위 캐나다 연구에서는 의료적, 사회 심리적, 감정적 상황에 대한 정보와 또한 지역 사회/통합, 고용/ 재정적, 일상생활(ADL)/자기 관리 문제들이 강조되었다. 척수손상 발생 이후 처음 3년 동안의 적응 정도는 사회적 그리고 교육적 지원이 척수장애인뿐만 아니라 가족에게도 제공됐을 때 더 향상된다 (53). 미국에서 진행된 무작위 대조군 연구에서는 돌봄 제공자와 척수장애인 모두를 대상으로 한 사회 심리적 개입 방법이 건강 관련 증상을 완화하고, 돌봄 제공자의 사회적 고립을 방지하는 데 가장 효과적인 것으로 밝혀졌다(54). 가족 지원 방법으로는 대면 문제 해결 교육 프로그램, 전화와 비디오 영상 회의를 통한 지원, 교육 자료 제공 등이 포함된다. 이러한 지원은 기능적인 문제 해결 능력을 향상시키고, 어떤 경우에는 돌봄 제공자의 우울감 완화에도 도움이 되는 것으로 나타났다 (55, 56). 160 척수 손상의 국제적 관점
외상성 손상을 당한 아동의 가족에게 재활 기간 동안 제공되는 포괄적 지원 서비스는 효과적인 것 으로 입증되었다. 이 서비스는 퇴원 후 관리 조정, 교육 프로토콜, 지지 그룹 활용, 가족을 위한 동료 지지 프로그램 등을 포함하고 있다(57). 이분척추증 아동의 가족을 위한 개입과 연구는 아직 부족한 상황이다(58). 단기 보호(respite care) 프로그램은 아동이나 노인 장애인 돌봄에 책임을 지고 있는 가족들이 휴식이나 정신적 스트레스 완화가 필요할 때 고소득 국가에서 시행하는 흔한 솔루션이다(59). 그러나 자원이 부족한 상황에서는, 지역 사회 중심 재활(CBR) 프로그램이 장애 아동 가족의 지지를 위한 중요한 방안이 될 수 있다(60, 61). 자원봉사 조직도 지원 방안 중 하나가 될 수 있다. 방글라데시의 부모들은 자신들이 재활 센터에서 다른 부모들을 만나 이야기를 나누는 것이 이로웠음을 보고하였다(16). 케냐에서 이분척추증 자녀를 둔 가족을 대상으로 한 연구에서는, 4분의 3이 같은 교회의 사람들과 친구가 되었으며, 이들 중 절반 이상이 다른 장애 아동 부모를 만나게 되었다고 응답하여 상호 협력 및 지지의 수단이 이용 가능함을 보여 줬다(15). 그러나 NGO와 지역 사회 중심 재활 프로젝트 모두 아직 지리적으로 전체를 포괄하지 못하고 있다.
▶ 공식적인 보조 서비스(Formal Care) 공식적인 보조 및 지지 서비스는 거주 방식의 지지 서비스, 지역 사회 지지, 단기 보호와 기타 서비스를 포함한 다양한 영역에서 진행된다. 공식적인 서비스는 공공, 민간 영리, 민간 비영리 단체를 통해 전달되거나 혹은 위의 내용이 함께 통합된 형태로 제공된다(39). 공식적인 관리는 장애인과 비공식 돌봄 제공자 모두에게 혜택을 줄 수 있다(62, 63). 그러나 저소득 국가에서는 이런 형태의 서비스를 위한 자원이 부족할 수도 있고, 이용자의 비용 부담이 지나치게 높아질 수도 있다(64). 고소득 국가에서 시행하는 공식적인 관리의 전통적 방식인 거주 시설 지원 서비스는 보통의 삶을 스스로 주도해야 할 장애인 당사자의 선택과 자유를 약화시킨다.
장해 요인에 대한 대처 비공식적인 보조와 지지는 일련의 공식적 보건 의료 시스템 및 서비스와 함께 진행될 때 더욱 효과 적인 것으로 나타났다. 예를 들어, 단기 보호 프로그램은 가족들이 이분척추증 혹은 척수장애 아동의 비공식 돌봄 제공과 관련된 스트레스에서 잠시 벗어나 쉴 수 있는 기회를 마련해 준다(62). 고소득 국가에서는 최근 몇십 년 사이 거주 시설 기반 보건 의료 서비스 (65, 66)에서 지역 사회 기반 서비스로 이동해 가는 모습을 볼 수 있었다. 지역 사회에서 지원 활동을 하는 사람들은 모든 연령대의 척수장애인이 거주 시설에 들어가기보다는 각자 자신의 집에서 생활할 수 있도록 돕고 있다. 이것은 대부분의 당사자가 선호하는 방식이며, 장애인 권리 협약 19조에서 명시하고 있는 내용이기도 하다. 지역 사회 지원은 자기 신변 처리, 이동, 참여를 보조해 줄 수 있고, 척수장애인 개인의 보다 나은 기능과 건강과 연관되어 있다(67, 68). 가정 기반 보조와 지지는 이동 능력이 없거나 제한적인 장애인에게 중요하다. 이동성 부족은 의료 합병증 비율과도 관련이 있어, 보조인이 6. 태도, 관계, 적응 161
건강 관련 지원 업무의 공식적 훈련을 받아야 할 필요를 뒷받침한다(13, 69). 올바르게 실행될 경우에 지역 사회의 상황 안에서 제공되는 공식적 서비스는 비용 효율적일 (70, 71)뿐만 아니라 신경인성 방광 관리의 향상과 척수 손상과 관련된 이차 합병증 위험 감소에도 (67) 도움이 되어 궁극적으로 삶의 질 향상에 기여한다는 점이 증명되었다. 하나의 예로, 남아프리카공화국에서 진행된 것처럼 NGO와의 협력은 저·중소득 국가의 사람들에게도 공식적인 서비스를 제공할 방안이 될 수 있다(72).
▶ 활동 보조인 고소득 국가에서는 지원해 줄 가족이 없는 경우, 비공식 돌봄 제공자의 스트레스를 덜어 주기를 원하여 비용을 지불하여 보조인을 고용하는 경우, 더 많은 자기 통제와 유연한 활동을 선호하는 경우에, 활동 보조인 모델이 좋은 해결책으로 광범위하게 알려져 있다. 이런 맥락에서의 활동 보조는 이용자의 통제 아래 이용자가 지역 사회 생활에 필요한 기본적인 활동을 수행할 수 있도록 개인이 제공하는 대인 서비스를 지칭하는 말이다. (예를 들어, 의복 착용, 목욕, 화장실 이용, 빨래, 가사일, 쇼핑 등) (73). 기관에서 제공하는 공식적 보조와 지원은 보조인이 수행할 수 있는 업무의 영역과 활동 시간에 적용되는 엄격한 규칙이 있을 수 있다. 이런 경우에, 기관에서 특별히 규정한 영역 이외의 서비스를 이용하기를 원하는 이용자의 협상 범위가 제한될 수도 있다(74). 반대로 이용자 주도의 활동 보조 프로그램은 이용자의 웰빙 증진, 입원 감소, 전반적인 만족감 향상의 결과로 이어졌다(51, 74-76). 활동 보조인은 척수장애인이 지역 사회 삶 (77), 학교, 자원봉사, 활발한 고용 활동, 사회적 그리고 오락적 활동에 더욱 많이 참여할 수 있게끔 한다(51). 활동 보조인의 이용 가능성은 이용자의 운동량 에도 영향을 미칠 수 있다. 미국에서 진행된 한 연구에 따르면 , 절반 이하의 수동 휠체어 이용자들이 주당 150분 정도의 중강도 혹은 고강도의 신체 활동 권고를 충족한 것으로 나타났다(78). 켄과 크롤(Kehn & Kroll)이 운동을 하거나 혹은 하지 않는 척수장애인을 대상으로 이들의 신체 활동 수준에 대해 인터뷰를 한 결과, 운동 기기나 장비 사용을 도와줄 수 있는 활동 보조인의 유무가 운동을 하게 되는 가장 주된 요인이라고 했다. 활동 보조 모델의 확산을 가로막는 장해 요인들로는 재정 부족 (80), 불충분한 평가 체제, 활동 보조 이용자 및 활동 보조인에 대한 훈련 필요 등을 들 수 있다. 활동 보조인을 고용하고 관리하려면 척수장애인이 예산을 관리하고 고용주로서의 업무를 수행해야 하는데, 이는 모두에게 가능하지 않 거나 바람직하지 않을 수도 있다(81).
162 척수 손상의 국제적 관점
장해 요인에 대한 대처 개별적으로 민간 활동 보조인 서비스를 이용할 수 있는 사람을 제외하고는, 활동 보조 서비스 제공은 대개 국가의 보건, 사회 보장 시스템에 의해서 제공된다. 그러나 근거를 바탕으로 한 체계적인 문헌 고찰에 따르면, 활동 보조 서비스가, 특히 높은 수준의 관리가 필요한 장애인을 위한 시설 기반의 서비스 비용과 비교했을 때, 고소득 국가에서 비용 효율적인 것으로 나타났다(63). 예를 들어, 스웨덴에는 활동 보조 프로그램이 있어 중증 장애인이 직접 혹은 중개 기관의 도움을 받아 활동 보조인을 고용하는 것이 재정적으로 가능하게 되어 있다. 그리하여 개인 맞춤형 보조와 지지를 제공받고, 지원 제공에 대해 장애인 당사자의 영향력을 최적화하게끔 하였다(82). 저·중소득 국가는 대부분의 척수장애인이 스스로 활동 보조인 비용을 부담할 여력도 없고, 국가의 지원도 받기 어렵다. 그러나 비공식적 보조와 지원 또한 의존성 강화보다는 역량 강화라는 인권적 가치를 반영한 방법들을 통해서 전달될 수도 있을 것이다(83, 84). 개별 활동 보조 제공은 요구에 대한 사정 평가에서 출발해야 한다. 예를 들어, 뉴질랜드에는 공적 기금으로 조성된 사고 보상 공사(Accident Compensation Corporation: ACC)에 국가 중증 손상 서비스(National Serious Injury Service)가 있어 사례 관리자를 지정하여 개인의 지역 사회에서의 요구 사항을 조율하도록 하고, 독립적 생활 및 직업 복귀를 장려하는 것을 목표로 한다(85). 또 필요한 보조 시간에 대한 평가는 표준 가이드라인에 따라 독립적인 ACC 후원의 작업 치료사가 진행하고, 이 과정에서 작업 치료사는 척수장애인의 현재 남아 있는 기능과 일상적인 하루 안에 어떤 것들이 필요한지 고려하게 된다. 장애인 단체(DPO)와 기타 중개 기관의 지원은 척수장애인이 자신의 보조인을 고용·관리하고, 고용 주의 역할을 충실히 수행할 수 있도록 역량을 강화하는 데 있어 매우 중요할 수 있다(86). 이용자들은 대체로 자신의 활동 보조인을 스스로 교육하는 것을 선호하며 혹은 현재 활동 보조인이 후임자를 교육시켜 주기를 바란다. 산소 호흡기 사용법, 환자 들기와 이송 및 피부 관리, 혈압, 호흡기 감염과 요로 감염과 같은 기타 건강관리에 필요한 내용들에 대한 특정한 교육이 요구될 수도 있다. 활동 보조 교육은 이용자와 활동 보조인 (87) 모두의 이해를 증진시키고, 의료비 증가와 이환율과 사망률의 원인이 되는 2차 합병증 발생의 감소에도 도움을 줄 수 있다(88).
6. 태도, 관계, 적응 163
가족 관계
지원 업무로 인한 영향은 사람 간의 관계를 더욱 어렵게 만들 수 있는 요인 중의 하나이다. 앞에서는 아동과 성인을 지원하기 위해 제공하는 업무에 대해서 중점적으로 이야기하였다. 그러나 가족의 감정적 측면은 척수장애인 지원만큼이나 중요하다. 사회적 지지, 특히 감정적 지지와 문제 해결을 위한 지원의 이용 가능성이 손상의 초기 단계에서 척수장애인의 삶의 만족감에 있어 중요한 것으로 나타났다(89). 사회적인 관계 속에서 느끼는 존엄, 자부심, 자긍심, 희망, 기쁨의 감정은 척수장애인에게 성공적인 삶의 단단한 기반을 제공해 준다(37, 90). 이런 긍정적인 태도는 가족과 친구들이 제공하는 지원의 정도와 종류와 관련되어 있다. 가족과 친구는 특히 장애 아동에 있어 과도한 도움을 제공 (91)할 위험이 있기는 하지만, 회복을 도와주고 새로운 삶의 역할을 설정하는 데 있어 매우 중요하다. 또한 사회적 지원이 중요하긴 하지만, 통증 증상에 대해 지나치게 걱정해 주는 주위 사람은 척수장애인이 통증을 스스로 극복하는 것을 더욱 어렵게 만든다는 증거도 있다(92). 몇몇 연구를 통해 장애나 중증 만성 질환에 대한 적응이 정신적 웰빙을 증진시키는 결과로 이어진다는 사실이 밝혀졌다(93, 94). 수많은 연구에서 척수장애인의 정신적 측면과 삶의 질 사이에 긴밀한 관계가 있으며, 종교 활동 참여를 통해 사회적 지지를 제공받을 수 있는 것으로 나타났다(97, 98). 척수장애인은 단순히 지지의 수동적 수용자로서가 아니라 , 자신의 사회적 기술 , 대처 기술 , 강점 , 자원과 같은 심리적 ‘장비’들을 사용해서 관계와 환경을 의식적으로 형성해 가는 활발하고 자율적인 주체로서 받아들여져야 한다. 예를 들어, 이란에서 진행된 연구에서는, 자신감, 종교적 믿음, 사회적 네트워크, 긍정적 사고 등이 상황 대처의 촉매제인 것으로 밝혀졌다(99). 척수장애인은 지원을 받을 뿐만 아니라 제공도 할 수 있으며, 지원을 제공하는 것은 지원을 받는 것보다 척수장애인에게 더 많은 이점이 있을 수 있다(68).
▶ 파트너 척수손상은 관계에 있어 부정적 영향을 미칠 수 있으며, 많은 연구에서는 손상 이후 이혼의 위험이 증가한다고 보고하고 있다(100-105). 그러나 이것은 단기적인 영향일 수 있다. 한 연구에 따르면, 일반 인구의 88.8%와 비교하여, 척수손상 이후 5년 동안 결혼 생활을 유지하고 있는 척수장애인 커플의 비율이 80.7% 이상인 것으로 나타났다(106). 다른 연구에서도 척수장애인 커플과 일반 인구 사이의 이혼율은 차이가 없는 것으로 밝혀졌다(107). 이렇게 다른 결론에 대한 실마리는 외상성 척수손상이 가족 회복력 혹은 가족 해체로 이어질 수 있다는 점이 발견된 대만, 중국의 연구 사례에서
164 척수 손상의 국제적 관점
찾아볼 수 있다(108). 함께 시간을 더 보내는 과정에서 관계에 긍정적인 영향이 발생할 수도 있다 (109). 그러나 이런 연구에서 도출된 결론을 비교하는 것은 어려운 일이다. 왜냐하면, 손상 이후 이혼과 별거에 대한 시간 프레임이 다양하고, 결혼의 정의가 상이하기 때문이다(어떤 연구에서는 결혼하지 않고 동거만 하는 경우를 포함시키기도 하며 때론 포함시키지 않기도 하였다) (110). 이런 연구의 다양한 결과를 해석하는 것은 문화적 다양성, 일반적 사회에서의 가족생활의 변화, 연구에 사용된 방법의 다양성으로 인해 심지어 더욱 어려운 일이다. 종종 척수손상에 의해 부정적 영향을 받는 성적 능력도 파트너와의 관계에서 중요한 부분이다. 예를 들어, 영국과 네덜란드에서 진행된 연구에서는, 퇴원 12-18개월 후의 척수장애인 일부를 대상 으로 한 조사에서 성적 만족이 종종 매우 낮게 나타났다(111, 112). 비록 몇몇 사람들은 변실금과 요실금에 대한 우려로 성관계를 꺼리는 경우도 있지만, 남성 척수장애인 파트너의 사례 연구에서는 발기 기능과 같은 생물학적 요인 (115)보다 파트너에 대한 만족감이나 친밀함의 정도와 같은 요인 들을 성적 만족에 더 많이 연결시키는 것으로 나타났다(113, 114). 그리스, 인도, 중국의 연구에서는 편견과 기타 부정적인 믿음 등이 척수장애인의 결혼과 성적 능력의 주요 장애물로 작용하는 것으로 드러났다(116-118). 소아기에 발생한 척수손상을 가진 성인 장애인의 경우 이성 교제는 소아에서 성인으로 성장하는 과정에서 가장 어려운 전환점 중의 하나인 것으로 평가되었다(119). 성적 능력이 항상 문제가 되는 것은 아닐 수 있다. 스웨덴의 한 연구에서는 84%의 척수장애인의 파트너들이 자신들의 관계가 만족스럽다고 생각했으며, 45%는 현재의 성생활이 손상 이전만큼 좋거나 혹은 더 만족스러워하고 있었다. 특히 생리적인 측면보다 감정적 친밀감, 다양한 성적 활동, 상호 관심사 등이 더욱 중요한 것으로 나타났다(120). 545명의 스칸디나비아 지역 여성 척수장애인을 대상으로 한 연구에서는, 80%가 손상 이후 성관계를 가졌다고 응답했다. 절반 정도의 여성 척수 장애인이 파트너와 만남을 가지고 있으며, 85%는 자신들의 관계가 매우 좋거나 혹은 비교적 좋은 편이라고 응답했다. 그러나 대조군에 비하여 여성 척수장애인에서는 성 활동 정도, 욕구, 성적 흥분, 만족감이 낮게 나타났다(121).
장해 요인에 대한 대처 친밀 관계에 대한 지지는 척수장애인의 웰빙 증진에 있어 매우 중요하다. 파트너와의 친밀한 관계 유지는 삶의 질(103)과 웰빙(122)에 긍정적인 영향을 미친다. 몇몇 연구에서는 결혼 상태가 독립적 생활의 결과 변수에 대한 강력한 예측 인자인 것으로 드러났다(100, 107, 123, 124). 척수손상 이후 적정한 성적 적응은 신체 기능 향상, 소득 증가, 직장과 지역 사회 참여 증대, 사기 증진 등과 양의 연관 관계를 가지고 있다(125). 재활 팀의 모든 구성원들은 척수장애인의 성적 능력 문제를 다루는 데 있어 각자의 역할과 책임을 가진다. 앞선 스칸디나비아 연구에서도 언급했지만, 61%의 여성들은 척수손상 이후 성적 능력에
6. 태도, 관계, 적응 165
대한 정보를 전혀 받지 못했다. 연구의 응답자들은 척수손상 바로 직후의 너무 이른 시기보다는 자신들이 필요로 할 때 정보와 지원 제공을 모두 받기를 원했다(121). 청년 장애인도 또한 적절한 성교육에 접근할 수 있어야 한다(126). 성의학 능력(sexological competence)을 향상시키기 위한 재활에서의 다학제적 팀과 개별적인 훈련 프로그램이 효과적인 것으로 나타났다(127, 128). 특히, 척수장애인은 동료 성 상담 프로그램을 높이 평가하고 있다(129). 성 건강에 대한 개입이 정말로 중요한 시기는 재활을 위한 입원 시기부터 퇴원 후 6개월까지의 기간이다(130). 관계 상담은 파트너 중 한 명이 척수 손상이 있는 커플의 지원에 효과적인 것으로 밝혀졌다. 왜냐하면, 관계 상담이 상호 관계를 증진시키고 의사소통 기술을 향상시킬 수 있기 때문이다 . 유용한 접근 방식들은 새롭고 상호 간에 즐거움을 주는 활동의 개발을 강조한다(131, 132). 여성 배우자들은 일방적인 돌봄 제공보다 책임을 공유하는 태도가 남성 척수장애인과의 성공적인 결혼 생활의 요인이라고 답 했다(124). 척수손상 발생 이후 관계가 붕괴된 사람들 역시 새로운 관계를 고려해 볼 수 있는 희망적인 근거가 있다 . 손상 이후 결혼을 한 사람들이 자신들의 삶의 환경 , 관계 , 건강에 대해 보다 만족하고 , 성생활도 향상된 것으로 나타났다(113, 133). 이는 부분적으로는 이런 사람들이 처음부터 보다 활발하고, 적응을 잘하고, 만족도가 더 높은 집단이기 때문일 수도 있고, 또한 결혼을 통해 이들의 삶의 질이 향상됐을 수 있기 때문이다(133).
▶ 부모와 자녀와의 관계 청년기의 척수 손상은 가족 전체에게 정신적으로 충격일 수 있다. 근거를 바탕으로 한 고찰에 의하면 이분척추증 자녀를 가진 가족 중 12-13%는 임상적 수준의 ‘가족 기능 장애’를 겪고 있으며 (134), 이러한 문제는 가족의 상황이 사회·경제적으로 어려운 경우 더욱 악화되는 것으로 나타났다. 북미 에서 진행된 한 연구에서는 25%의 소아 척수 환자, 41%의 환자 어머니, 35.6%의 환자 아버지가 외상 후 스트레스 장애(PTSD)를 겪은 것으로 밝혀졌다(135). 그러나 다른 사례에서는, 종종 가족들은 회복력을 보이기도 하며 이분척추증에 대처해 나가는 과정을 통해 부모의 결혼 생활이 더욱 강화될 수 있는 것으로 나타났다(134). 근거들에 따르면 이분척추증 아동의 형제자매에게서는 긍정적, 부정적인 영향 모두 발견된다고 하며, 예를 들어, 장애를 가진 형제자매의 건강과 사회적 웰빙에 대한 불안과 염려뿐만 아니라 이들에 대한 공감과 자신의 신체적 능력에 대한 감사를 갖게 되는 것으로 나타났다(134). 장애를 입은 아이의 형제자매들의 불안과 우울에 대한 몇몇 근거들이 있지만, 한편으로는 이런 상황은 극복될 수 있고, 가족이 이 상황에 얼마나 대처를 잘 하는지에 달려 있다(137). 장애 아동은 다른 자녀들과 같은 방식 으로 가족의 한 구성원으로서 대우를 받아야 한다.
166 척수 손상의 국제적 관점
남성과 여성 척수장애인이 자녀를 가질 수도 있다(138). 스칸디나비아 연구에서는 18%의 여성 척수장애인이 손상 이후 자녀를 가진 것으로 나타났다(121). 사례에 따르면, 척수장애인 어머니와 비 척수장애인 어머니 사이의 자녀 양육 방법에는 큰 차이가 없으며, 비 척수장애인 어머니와 비교해 척수장애인 어머니가 키운 아이들의 결과 또한 차이가 없는 것으로 나타났다(139, 140) 유사한 내용을 척수장애인 아버지의 자녀 양육에서도 확인할 수 있다(141). 그러나 장애 손상 이후에 부모 역할을 재정의할 필요는 있다(142). 자녀들은 부모의 장애를 대체로 편하게 받아들이며, 진솔한 대화가 수용의 핵심이 된다고 받아들여지고 있다(143). 그러나 자녀가 자신의 나이와 맞지 않게 자신의 부모나 장애 형제자매를 돌보는 역할이 맡겨지는 힘든 상황에 부딪히는 위기 상황이 찾아올 수도 있다(144).
장해 요인에 대한 대처 보건 의료 제공자들은 사회 심리적 지원이 필요한 척수장애 아동 가정을 파악해야 한다(134). 사회적 네트워크는 장애인과 장애 아동의 가족에게 매우 중요하다. 십 대에 척수손상을 당한 중도 장애인을 대상으로 한 스웨덴 연구에서는 부모와 동료가 중요한 네트워크로 확인되었다. 부모는 보건 의료 제공자와의 상호 작용에 있어 지지자이며, 슬픔, 절망, 분노의 대처에 도움을 주는 지원자이다. 동료는 활동을 장려하고 개인의 발전을 확인해 주는 데 있어 매우 중요한 존재이다. 보건 의료 제공자 들은 당사자가 가진 사회적 네트워크를 효과적으로 이용해야 한다(146). 부모에 대한 교육은 그들의 인식에 영향을 미칠 수 있고, 자신의 장애 아동에 대해 현실적 목표를 설정하는 데 도움을 줄 수 있다(16). 이분척추증 장애인의 삶의 질에 대한 한 케냐의 연구에서는, 부모, 돌봄 제공자, 지역 사회를 대상으로 시행하는 해당 장애에 대한 교육은 물리적, 심리적 그리고 의사소통 발달 결과의 향상에 기여할 수 있는 것으로 나타났다(147). 성인기로의 전환은 이분척추증 장애 아동에게 중요한 문제이며 북미 (149)에서는 생애 과정 (life-course) 모델을 기반으로 한 상당한 활동의 주제가 연구되어 왔었다. 그리고 이 생애 과정 모델은 성공적인 성인기 삶에 가장 영향을 미치는 주제와 발전 단계를 설계하기 위한 것이다(150). 부모에게도 자녀의 자립심을 길러 주기 위한 교육이 필요할 수 있으며, 이를 통해 장애 자녀가 정규 교육 과정 이후의 교육, 자립 생활, 가능하다면 고용 활동에 참여할 수 있도록 해야 한다(148). 사회의 다양한 단체들은 레저 활동이나 우정을 쌓는 네트워크 활동 참여를 도와줄 수 있다. 이분척추증을 가진 청년이 자립 생활 (151), 집안일 처리, 대중교통 이용(접근 가능하고 이용 가능한 경우), 지역 사회 활동에 참여하도록 장려해야 한다 (152). 척수 장애 청년의 성인기로의 전환을 돕기 위한 적절한 성교육도 매우 중요하다(126). 비장애 아동에 관해서는, 사회 복지사, 기타 지지자들이 장애를 가진 형제자매와 관련된 복잡한 감정을 잘 다스릴 수 있도록 이분척추증 아동의 형제자매에게 도움을 주어야 하며 (153), 이들이
6. 태도, 관계, 적응 167
어려움에 대처할 수 있는 각자 나름의 역량과 자원을 개발할 수 있게끔 도와주어야 한다. 또한 재활 센터는 중도 장애인이 된 부모를 둔 아이가 방문하였을 때 발생하는 요구에 대해 고려해 봐야 한다. 이는 적절한 시설의 제공을 위해서도 필요하거니와 이러한 상황에 놓인 아이들에 대한 이해와 정서적 적응을 촉진시키기 위함이다(154).
척수손상에 대한 적응
척수손상을 입는 것은 개인의 자존감에 큰 어려움으로 작용할 수 있다(155). 얼마 전까지 독립적으로 살던 사람이 이제는 자신의 삶, 심지어는 신체까지도 통제할 수 없게 되어 다른 사람의 도움에 의지할 수밖에 없게 될 수 있다. 외상성 척수손상은 적응을 더욱 어렵게 만드는 외상성 뇌 손상을 동반할 수도 있다(156). 척수손상 이후의 삶의 질과 관련된 변수 또한 많다. 운동 기능의 손상뿐만 아니라 실금, 경직, 통증과 같은 2차 합병증을 경험하는 경우는 더 낮은 삶의 만족도와 연관되어 있다(111, 112, 122, 157, 158). 게다가 접근성이 낮은 환경에서는 휠체어를 타고 돌아다니는 것이 어려울 수 있으며, 환경적 장애물의 경험 역시 낮은 삶의 만족도와 연관된다(90). 장애에 대한 적응은 척수장애인이 주변 환경에 더욱 잘 적응해 나가는 하나의 역동적인 과정이다(159). 척수장애인의 삶의 만족도에 대한 연구들의 서술적 고찰 (160)에서는 척수장애인은 일반 인구와 비교해 평균적으로 더 심한 괴로움과 낮은 삶의 만족감을 경험하는 것으로 확인되었다. 그러나 그 정도는 매우 다양하며 대부분의 척수장애인은 자신들의 상태에 잘 적응하는 것으로 나타 났다. 예를 들어, 네덜란드 연구에서는, 연구 참여자들의 75%가 척수손상 이후 삶의 만족감이 떨어 지는 것을 경험했으나, 손상 1년 후에는 50%의 참여자가 자신의 삶에 만족하거나 매우 만족하였다(112). 정신 건강에 관한 근거들의 고찰에서는 척수장애인의 20-30%가 일반 인구보다 상당히 높은 수준의, 임상적으로 유의미한 우울 증상을 보였다(160). 비록 불분명하나 시간이 지나면서 우울 증상이 감소 된다는 몇몇 근거가 있다. 마찬가지로 대부분의 연구에서는 척수장애인의 7-27% 정도가 외상 후 스트레스 장애를 겪는 것으로 보고되고 있다(160). 이러한 근거들을 통해 입증된 점은, 비록 평균보다 높은 정신 건강 문제의 위험에도 불구하고, 대부분의 척수장애인은 자신들의 상태에 잘 적응하게 된다는 것이다. 장기간에 걸친 연구들에서 노인 척수장애인의 경우 적응을 잘 하고 삶의 질도 높은 것으로 나타났다 (158, 161). 예를 들어, 사지 마비 장애인을 대상으로 한 프랑스 연구는 응답자의 거의 4분의 3이 자신 들의 주관적인 웰빙(행복) 상태를 상당히 우수하거나 혹은 매우 우수하게 평가한 사실을 발견하였다(122).
168 척수 손상의 국제적 관점
다른 중도 장애인들과 마찬가지로, 성공적으로 적응한 척수장애인은 새로운 상황에 대한 정신적 적응에 유연한 사람들이다. 여기에는 이룰 수 없는 목표에 대한 가치를 재평가하고 성공에 대한 기준을 바꾸는 것 등이 포함될 수 있다(155). 이러한 정신적 변화가 물리적이고 신체적인 가능성들에 못지않게 삶에서의 만족감을 느낄 수 있게 해 준다. (101). 평가 이론에 따르면 사람들이 자신에 대해 갖는 감정은 상황에 대한 자신의 인지적 반응에 달려 있다고 한다. 사람들은 자신의 상황 평가와 행동적 선호도에 따라 다양한 대처 방식을 취하게 된다. 건강 문제에 적응하는 통합적 개념적 프레임워크는 다음의 내용으로 기술되어 왔다(162). 즉, 개인의 자원(예: 개성, 지능), 건강 관련 요인들, 사회적·물리적 상황(예: 가족, 환경), 인지적 평가와 적응 활동(예: 증상 관리, 긍정적인 자기 이미지 관리, 타인과의 관계 관리)을 강조했으며, 이러한 각각의 요인 범주는 개입을 위한 잠재적 대상이다. 척수손상 이후 정신 건강 및 삶의 만족도와 관련해 48개 연구를 기반으로 최근에 진행한 심리학적 요인에 관한 고찰에 따르면, 삶의 만족 및 정신 건강과 지속적으로 관련된 요소는 인지된 삶의 통제, 일관성(sense of coherence), 희망이나 삶의 목적과 같은 긍정적 요소, 자기 효능감과 자존감 같은 자긍심, 긍정적·부정적 정서, 외상 후 인지인 것으로 알려졌다(163). 장애 수용의 대처 전략이 장애 적응의 일관된 결정 요소인 반면에, 대부분의 감정 중심의 대처 방식은 삶의 만족이나 정신 건강과 관련이 없다. 비록 능동적 문제 중심 대처 방법이 일반적으로 선호되는 전략이지만, 이는 과학적 문헌과는 일치하지 않는 내용이다. 척수장애인의 경우처럼 목표 달성이 불가능한 상황에서는, 개인적 선호도나 목표를 상황적 변화에 맞추어 조정하는 것이 삶의 환경을 개인적 선호도에 따라 변화시키기 위해 노력하는 것보다 적응과 관련해서는 더욱 효과적이고 긍정적 일 수 있다(164).
▶ 장해 요인에 대한 대처 재활 재활 서비스에 대한 접근을 위해서는 적절한 보조 기기 기술에 대한 접근과 장과 방광의 자기 관리 능력이 필요할 뿐만 아니라, 기타 지원과 정보를 제공받을 수 있어야 하는데, 이 모두는 적응의 주요 단계들이다. 스리랑카에서 진행된 소규모 연구는 재활 서비스에 접근했던 척수장애 남성의 건강 및 심리적, 사회적 결과 향상의 증거를 보여 주고 있다(165). 사람들이 자신을 생각하는 방식이 개인이 얼마나 신체장애에 적응할 수 있는지를 예측할 수 있게 해 줄 수 있으므로 (166, 167), 긍정적 자존감 회복을 위해서 사람의 손상된 신체에 대한 인식을 재활 기간 동안 새롭게 정립시켜야 한다. 재활 전문가는 정보를 제공하고 타인의 시선에서 오는 두려움을 극복하는 데 효과적이라고 알려진 단체 외출과 같은 기회들을 통해 환자의 자아상(self-image) 형성에 상당한 영향을 미칠 수 있다 (167).
6. 태도, 관계, 적응 169
척수손상 이후 진행되는 심리적 개입에 대한 사례 증거들은 계속 늘고 있지만, 여전히 완전하지는 않은 편이다. 척수장애인의 우울한 감정을 완화시키기 위해 가장 빈번하게 진행하는 개입 방법은 인지 행동 치료(CBT)로, 척수장애인의 감정과 행동적 변화를 촉진하기 위해 다양한 기술들을 가용 하는 방식이다(104, 168). 인지 행동 치료는 ‘비합리적인’ 혹은 부정적인 생각에 대한 대처, 보상이 따르는 활동에의 참여 기회 증가, 긴장 완화 방법 등을 포함할 수 있다. 또한 단호한 태도, 사회적 기술, 성적 능력에 대한 내용도 포함되었다. 그룹 인지 행동 치료는 동료의 지지, 사회적 기술 연습, 추가적인 관점 습득에 있어 비용 효율적인 기회가 될 수 있다(169, 170). 또한 효과적 대처 훈련(CET)도 척수장애인에게 긍정적 결과를 가져올 수 있으며, 특히 기저에 보다 심각한 정신 건강 장애를 가진 사람들에게 좋다 . 이 방법은 척수손상과 관련된 환자의 부정적 생각을 바꾸고, 장애에 따른 결과를 관리할 수 있다는 인식을 강화시켜 정서를 개선시킴으로써 효과적일 수 있다. 손상과 관련된 주제의 경험과 정보를 공유, 감정적 그리고 인지적 반응의 발견, 동료와 심리학자의 지지와 교육의 기회를 강조하는 지원 그룹 치료(SGT)도 또한 우울증과 불안 감소에 효과적이다(173). 자기 효능감(어떤 상황에서 성공할 수 있는 능력에 대한 믿음)과 자존감(자신의 가치나 사람의 가치에 대한 개인적 감정)을 포함한 일련의 긍정적인 심리학적 요소는 삶의 질 향상과 꾸준히 관련이 있다. 이러한 다양한 변수는 척수손상 이후 삶의 질을 회복할 수 있도록 사람들을 도울 수 있는 심리학적 자원으로 여겨질 수도 있다. 예를 들어, 자기 효능감과 자존감이 높은 사람은 자기 효능감이 낮은 사람보다 자신의 미래에 대한 통제력을 가질 가능성이 더욱 높다. 왜냐하면 전자의 경우가 상황 개선에 영향을 미칠 수 있는 자신의 능력에 대해 더 강한 믿음이 있기 때문이다. 긍정 적인 감정, 행동, 사고를 배양할 목적의 긍정적인 심리적 개입은 다른 집단들에서도 효과를 보였 으며 (174), 척수장애인을 대상으로도 효과를 시험해 볼 수 있을 것이다. 자기 효능감 향상을 목표로 한 다학제적이고 다양한 방식의 개입 효과에 대한 근거가 존재한다 (175). 능동적 생활같이 일반적, 특이적 자기 효능감은 능동적·자립 생활 프로그램이나 (176, 177) 신체적 활동 혹은 스포츠 프로그램을 (178-180) 통해 향상될 수 있다는 사실이 입증되었다. 지식은 다양한 방식의 개입 프로그램 속에서 향상되었으며 (181) 1년 후의 경과 관찰 시 지각된 자기 통제와 의미 있게 관련이 있었다. 건강 전문가들은 종종 희망의 중요성을 인정하면서도 , 환자의 ‘비현실적 ’ 희망과 그들이 보다 ‘현실적’인 희망으로 생각하는 것 사이의 균형을 맞추는 데 있어 어려움을 발견했다(182). 그러나 척수손상 이후 초기 기간에서의 태도적 관점에서 봤을 때, ‘회복의 희망’은 감당하기 매우 힘든 건강 위기 상황에서 효과적인 대처 메커니즘이 될 수도 있다(182, 183). 그러므로 척수 손상으로부터의 회복의 희망이 재활 프로그램의 능동적 참여를 가로막지 않는 한 개인의 희망을 계속 유지해 주는
170 척수 손상의 국제적 관점
것이 도움이 될 수 있다. 척수손상 초기 단계에 정신 건강 문제에 대한 스크리닝을 통해 심리학적 지원의 필요성을 확인할 수 있을 것이다 . 초기 입원 시기에 우울감을 갖는 척수장애인에 대한 심리 치료는 다학제적 재활 팀의 기능 중 일부로써 이용 가능하여야 한다. 이 단계에서의 심리학적 개입은 도움이 되며, 장기간에 걸쳐 발생하는 적응에 대한 문제를 예방할 수 있다는 강력한 근거들이 있다(160).
자조 그룹 척수장애인들은 대개 자조 그룹이나 다른 형태의 동료 상담과 같이 자신들과 비슷한 상황을 경험한 사람들과 만나서 덜 소외된 감정을 느낄 수 있는 그룹 학습을 가치 있게 받아들인다(184, 185). 영국의 백업 트러스트(Back-Up Trust)와 뉴질랜드의 척수 손상 재단(Spinal Injury Trust)과 같은 단체는 레펠 하강과 카약과 같이 자신감을 키우는 활동과 교육, 지원의 기회를 제공한다(박스 6.2 참조). 프랑스의 한 연구에 따르면, 비록 인과 관계의 방향성이 검증되지는 않았지만, 지역 사회 활동과 친구 모임에 자주 참여하는 것이 사지 마비 장애인의 웰빙(행복)과 긍정적인 연관성이 있는 것으로 나타났다(122). 저·중소득 국가에서는 사회적 네트워크, 지역적 네트워크 플랫폼, 그리고 남아시아나 동남아시아의 리버빌리티 아일랜드(Livability Ireland)에 의해 지원을 받는 단체들과 같은 소비자 조직의 역량 개발 지원에 있어 NGO가 중요한 역할을 수행할 수 있다(190). 모티베이션(Motivation) 이라는 영국 NGO는 말라위, 모잠비크, 루마니아, 기타 저·중소득 국가에서 동료 그룹 교육과 강사 양성 교육 프로그램을 운영하고 있다. 이 교육 프로그램은 최근에 마비된 사람들이 새로운 환경에 적응할 수 있도록 도와주는 숙련된 동료 상담가와 강사의 네트워크를 만들기 위한 목적으로 진행되고 있다(191). 이러한 장애인 운동은 많은 장애인들이 자신들의 친목 네트워크를 발전시키고 심지어 파트너를 만나는 데 있어 도움을 주었다(192, 193). 척수손상 이용자 조직과 네트워크는 값진 지침과 권익 옹호, 스포츠, 고용, 주거 지원 등의 형태를 가진 서비스를 제공하는 것 이상으로 중요한 역할을 수행하고 있다(박스 6.3 참조). 그러나 사지 마비 장애인을 대상으로 프랑스에서 진행한 연구를 보면, 연구 응답자의 56%가 장애인도 지역 사회의 구성원이라고 생각한다고 말한 반면에 그들 중 단지 3분의 1만이 지역 사회에 속한다고 느끼는 것으로 드러났다(194). 특히 여성 장애인이 지역 사회에 속할 가능성이 낮은 것으로 나타났다. 사회적으로 더욱 배제되고 심한 증상들을 경험한 사람들이 장애인 네트워크에 대한 소속감을 느낀다고 표현하였다(194).
6. 태도, 관계, 적응 171
박스 6.2. 척수손상 이용자 조직(Spinal cord injury comsumer organizations)과 네트워크 척수장애인을 위한, 척수장애인의 이용자 및 권익 옹호 조직은 동료 지원과 권익 옹호의 소중한 자산이 될 수 있다. 척수손상 이용자 조직과 네트워크는 국가적, 지역적, 세계적 차원으로 전 세계 다양한 지역에서 찾아볼 수 있다. 이들은 정치적·실천적인 노력 속에 연대를 통해 척수장애인의 삶의 상태 개선과 참여 증진을 위해 활동하고 있다. 이런 단체들은 스포츠 활동(종종 국제 경기에 참가할 남성, 여성 엘리트 스포츠맨 양성의 관점에서) 같은 단일 주제에 초점을 맞추거나 혹은 퇴역 군인이나 아동 같은 구체적인 인구 통계학적 그룹 (demographic groups)에 초점을 두기도 한다. 이들은 교육, 고용부터 주택 개조, 동료 지원에 이르기까지 삶의 모든 주요 영역에서 척수장애인의 요구를 맞추기 위해 활동하고 있다. 척수장애인 조직은 개별적으로 활동하는 단체일 수도 있고 혹은 대규모의 연대 조직이나 네트워크의 부분으로 활동할 수도 있다. 저·중소득 국가 대부분은 이런 구체적인 척수장애인 조직이 없을 수도 있으며 척수장애인의 이익이 복합 장애인 단체의 부분으로서 대변되는 경우도 있을 수 있다. 그러나 척수장애인 조직은 네팔과 우간다를 포함해 몇몇 저소득 국가에서도 설립되었다. 어떤 국가에서는, 과거에 환자와 관련된 지역의 작은 계획들이 지원과 적절한 주거에 대한 개인 요구의 결과로 발전 되었으며, 이런 계획이 통합되어 주거, 돌봄 서비스, 고용, 사회적 서비스 상담을 제공하는 호주 척수장애인 협회 (Spinal Cord Injuries Australia: SCIA)와 같은 국가적 네트워크 단체 탄생으로 이어졌다. 호주 척수장애인 협회는 또한 권익 옹호 담당 부서를 두고 통합 증진 활동, 정부 위원회에 구체적인 프로그램이나 법률 개정안 등을 제출하는 로비 활동(예: 농어촌 지역에 건강 서비스와 의료 전문가 지원에 관한 법률적 지원 요청), 정책 검토 과정에서의 의견 개진 활동(예: 장애 지원 연금을 위한 노동 손상 평가표 검토) 등을 하고 있다(186). 호주 척수장애인 협회는 과거에는 택시 승차 시 차별에 대한 불만 사례와 같은 개인 청원 사건을 지원하였다(187). 지역적 네트워크는 변화를 이행하는 데 있어 경험과 성공의 요인을 공유하는 수단이 될 수 있으며, 또한 전국 단위의 조직 수립을 위한 지원을 제공할 수 있다. 유럽 척수 손상 연맹(European Spinal Cord Injury Federation: Escif)은 2006년 창설되었고, 유럽 전역에 걸쳐 26개국의 척수장애인 단체가 참여하고 있다. 연맹의 역할은 정보 공유, 연례 총회 개최, 척수손상 등록 시스템과 같은 주제에 대해 연구 진행, 특별한 척수손상 관리 방법 및 재활에 대한 정보를 제공하는 것이다(188). 이러한 성공적인 경험을 국내적, 지역적 차원에서 만들어 나가면서 유럽 척수손상 연맹과 아시아 척수 네트워크 (ASCoN)의 이용자 네트워크 주도로 2012년 세계 척수손상 이용자 네트워크(Global Spinal Cord Injury Consumer Global Spinal Cord Injury Consumer)가 (189) 창립되었다. 이 단체의 목적은 기존 척수손상 이용자 그룹을 하나로 모으고, 서비스가 충분하지 못한 국가와 지역에 새로운 이용자 그룹을 만들고, 자신들의 활동을 확대하기 위한 것이었다. 세계 척수손상 이용자 네트워크의 주요 활동과 계획은 다음과 같다. ∙지역 정보 채널의 정식화(예: 웹사이트, 뉴스 업데이트) ∙지역 이니셔티브 지원과 홍보를 위해 단체와 주요 인사 연결 ∙세계 네트워크의 활동을 위한 자금 마련 및 기타 지원 제공 ∙전 세계에 걸쳐 활동하는 척수장애인 ’대사(ambassador)’ 임명 ∙다른 국가와 지역의 척수손상 그룹을 지원하기 위한 척수장애인 자원봉사단 조직 ∙척수손상 세계 이용자 네트워크 회의 개최 ∙장기적으로 세계적인 연대체나 조직으로서 이용자 네트워크 정식화
신체 활동과 스포츠 규칙적인 신체 활동은 상당한 사회적 혜택을 가져다줄 수 있으며, 새로운 친분 관계 형성, 경험의 공유, 사회적 지원 네트워크 구축, 전반적인 신체 기능 향상의 수단을 제공할 수 있다(195, 196). 스포츠 활동의 참여는 지역 사회로의 재통합을 지원하고 가족 관계를 향상시킴으로써 세상과의 접촉을 복구시키는 방법으로 알려져 왔다(197-199).
172 척수 손상의 국제적 관점
박스 6.3. 스리랑카의 동료 지원 스리랑카의 척수손상 협회(Spinal Injuries Association: SIA)는 척수장애인 당사자들에 의해 시작되었으며 동료 그룹 교육을 포함해 많은 유용한 프로그램을 진행해 왔다. 매달 정기적으로 협회 회원들은 최근 척수손상을 당한 사람들을 만나기 위해 종합 병원을 방문하고 있다. 협회 회원들은 롤 모델의 역할을 수행하고 있으며, 척수손상을 당한 사람들이 초기의 정신적 충격을 극복할 수 있도록 도움을 주고, 정보를 제공하며, 척수손상 후에도 훌륭한 삶을 살 수 있는 가능성을 몸소 보여 주고 있다. 사례 보고서는 이런 동료 상담이 희망을 포기하고 척수손상으로 인한 마비가 삶의 중단이라고 생각했던 많은 사람들에게 도움이 됐다는 사실을 보여 주고 있다. 다음의 사례에서도 언급되겠지만, 이런 프로그램은 성공적인 것으로 밝혀졌고, 동료 상담 프로그램을 더 개발하고 채택하기를 원하는 사람들에게 모델로 작용하게 될 것이다. “나는 1980년 9월 교통사고를 당했고 흉수 4번 아래 부위로 척수손상을 입었다. 종합 병원에서 3개월 동안 손상 치료 이후에, 당시에 유일한 척수장애인 재활 병원이었던 라가마 재활 병원으로 이송되었다. 나는 병원에서 다른 환자들이 콘돔형 카테터를 임시로 사용하는 방법을 보았고 , 이후에 이전부터 사용해 오던 유치 도뇨관을 포기하고 콘돔형 카테터를 사용하기 시작했다. 배변 활동을 위해서는 변기에 앉아 변이 잘 나오기를 바라는 수밖에 없었다. 엉덩이에 난 작은 상처도 골칫거리였다. 내 삶은 1998년에 바뀌었다. 영국의 모티베이션(Motivation)이란 단체가 재활 병원의 간호사에게 척수손상 환자 관리법을 교육시키고 휠체어 생산 워크숍을 시작하기 위해 스리랑카에 사무실을 열었다. 이 단체는 또한 동료 그룹 강사 양성을 위한 교육 프로그램을 진행했으며, 나는 이 교육에 참석했다. 척수손상, 욕창 예방법, 좋은 휠체어 쿠션 사용의 중요성, 장 관리, 방광 관리, 피부 관리, 성적 능력, 휠체어 이용 기술, 휠체어 관리, 기타 주제에 대한 수업을 포함해 5일간의 교육 프로그램이 진행되었다. 이 프로그램을 통해 장 관리를 위한 수지 자극법과 손을 이용한 배변 방법을 배웠다 . 과거에는 장운동과 관련된 불확실성 때문에 여행을 하는 데 있어 많은 두려움이 있었다. 교육에 참가한 후, 사용하던 휠체어 쿠션을 교체했으며, 이를 통해 욕창을 예방할 수 있었다. 다른 척수장애인이 시행한 교육도 큰 영향을 미쳤다. 이 동료 교육 이후에, 나의 일상생활 활동은 한결 수월해졌으며, 편한 마음과 자신감을 가지고 국내나 국외 여행을 다닐 수 있게 되었다. 이후 스리랑카 척수손상 협회는 동료 그룹 훈련을 계속해서 했고, 교육을 수료한 척수장애인의 삶의 질이 향상되는 모습을 보는 것은 무척 만족스러운 것이었다.” 시릴, 스리랑카
메타 분석에 따르면, 긍정적인 친목 관계가 신체적 활동과 주관적 웰빙 사이에 중간 또는 작은 크기의 연관이 있는 것으로 나타났다(200). 레크리에이션 및 신체적 활동에의 참여 (201)를 통해 사회적 상호 작용의 확대와 같은 심리적, 생리적인 이익을 볼 수 있는 것으로 문헌 고찰을 통해 밝혀졌다. 스포츠 활동에 참여한 척수장애인이 참여하지 않은 장애인보다 신체적 자립, 이동성, 고용, 사회 통합에 있어 더 높은 점수를 기록했음을 보여 주는 미국의 연구 사례가 있다. 특히, 팀 스포츠에 참여한 경우에 심리적인 이익이 더 분명한 것으로 나타났다(202). 그리고 독일 연구에 따르면, 스포츠 활동에 능동적으로 참여한 사람은 높은 고용률과 더 나은 삶의 질을 보이는 것으로 나타났다(203). 치료사 이외에 다른 사람들도 스포츠 활동 참여에 동기 부여를 하는 데 있어 도움이 된다(204). 또한 척수장애인은 특수 장비를 이용해 광범위한 스포츠에 참여할 수 있다(205-207). 최근0에 저가의 농구와 테니스용 휠체어가 개발 도상국에서 보급되기 시작했다(208).
6. 태도, 관계, 적응 173
결론과 제안
장애인은 비장애인이 장애인의 삶의 질을 평가하는 것보다는 자신들의 삶의 질을 일반적으로 높게 평가 한다(20, 147). 사회적 상호 작용 속에서의 존엄성, 자부심, 자신감, 희망, 기쁨 등의 감정은 척수장애인 에게 성공적인 삶을 위한 굳건한 기반을 제공한다(37, 90). 이러한 긍정적인 태도는 가족과 친구들로부터 제공되는 지원의 정도 및 형태와 관련되어 있다. 척수장애인과 다른 유형의 장애인에 대한 부정적 태도에 대처하기 위한 개입은 장애인 권리 협약 8조 에서 명시된 것처럼 우선순위가 되어야 한다. 특히, 보건 의료 전문가와 기타 서비스 제공자들은 존중과 존엄성을 갖고 척수장애인과 다른 장애인을 대할 수 있도록 교육받아야만 한다. 재활 기간과 이후 지역 사회에서 사는 동안 제공되는 적절한 서비스는 척수장애인의 적응 촉진 및 삶의 질 향상에 기여할 수 있다. 적절한 정보와 심리적 지원은 특히 중요하다. 보조에 대한 요구가 주로 친척 들에 의해서 충족되는 상황에서 가정 관리, 단기 보호, 활동 보조 지원의 제공은 척수장애인과 그 가족을 보다 자유롭게 해 줄 수 있다. 또한 스포츠, 문화, 정신적 활동의 참여는 자신감을 높이고 웰빙(행복)을 증진시킬 수 있다. 다음의 제안을 통해 구체적인 앞으로의 방향을 살펴본다.
▶ 지원 제공 척수장애 아동과 성인이 긍정적인 자부심을 갖고 적응을 이룩할 수 있도록 지지해 주어야 하며, 예를 들면 다음과 같은 것들이 있다. • 성적 능력 정보를 포함한 재활 치료 구성과 광범위한 지역 사회에서 상담 및 정보에 대한 접근 기회를 제공 한다. • 동료 네트워크와 자조 조직 개발을 지원한다. • 사람들이 스포츠, 종교, 문화, 정치, 레저 활동의 기회뿐만 아니라 교육과 고용에 대해 접근할 수 있도록 도와준다.
척수장애인의 가족과 돌봄 제공자에게 다음의 내용을 제공함으로써 지원한다. • 가족 구성원과 돌봄 제공자에 대한 상담, 정보, 조언 • 자조 그룹의 발전을 지원하는 등의 방법과 같이 유사한 환경에 있는 다른 사람들과의 만남 기회를 제공 • 장애로 인해 영향을 받은 커플에게 친밀한 관계 형성에 대한 정보와 조언을 포함한 결혼 관련 안내, 상담, 기타 개입 방법 • 이분척추증과 척수장애 아동의 형제자매를 위한, 성인으로의 이행 시에 제공되는 서비스를 포함한 감정적, 사회적 지원 • 필요하고 적절한 경우에, 이분척추증과 척수장애 아동의 가족을 위한 단기 보호와 기타 지원 제공
174 척수 손상의 국제적 관점
▶ 활동 보조 서비스 개발 가능하다면, 다음과 같은 방식으로 활동 보조 서비스 개발을 지원한다. • 이용자 주도의 돌봄 제도 지지 속에서 지역 사회 돌봄 계약 방식과 평가 절차를 개발한다. • 활동 보조 서비스 비용을 직접 지불할 수 있도록 법적, 재정적 시스템을 개발한다. • 척수장애인과 다른 장애인의 활동 보조 서비스 이용을 위한 역량을 강화한다. 예를 들어, 활동 보조 서비스 이용자를 지원할 수 있는 인프라 조직을 양성한다.
▶ 태도 변화 전문가, 기타 주요 서비스 제공자, 일반 대중의 장애인에 대한 긍정적 태도를 이끌어 낼 수 있도록 다음의 내용을 통해 도움을 제공한다. • 교사, 의사, 의료 분야와 연관된 전문가 양성을 위한 학부 과정 커리큘럼에 장애 관련 인권 문제를 반드시 포함시킨다. • 교통, 사회, 주택 서비스와 같이 고객 관리 관리에 책임을 지고 있는 인력에게 장애 평등 교육을 실시한다. • 장애인에 대한 부정적인 태도를 바꿀 수 있는, 학교와 미디어 등을 이용한 대중 인식 개선, 정보, 교육 프로 그램을 지지, 지원한다.
▶ 연구 독려 다음 주제에 대한 연구 장려를 통해 개입에 대한 근거 기반을 넓힌다. • 장애에 대한 부정적 태도를 전환하기 위한 효과적인 개입 방법 • 이용자 주도 관리 계획의 비용 효율적 측면과 이용자 만족도 • 척수손상 적응 지원을 위한 심리학적 개입 방법의 효과 • 긍정적인 자부심 배양과 관계 형성을 위한 척수장애인 지원에 있어서 스포츠, 사회적 미디어, 자조 그룹과 같은 개입 방식의 역할
▶ 참고 문헌 1. Chan F, Da Silva Cardoso E, Chronister, J.A. eds. Understanding psychosocial adjustment to chronic illness and disability: a handbook for evidence-based practitioners in rehabilitation. New York, NY, Springer Publishing 2009. 2. Boswell BB, Dawson M, Heininger E. Quality of life defined by adults with spinal cord injuries. Journal
of Rehabilitation, 1998, 64:27-32. 3. Hampton NZ, Qin-Hilliard DB. Dimensions of quality of life for Chinese adults with spinal cord injury: a qualitative study. Disability and Rehabilitation, 2004, 26:203-212. doi: http://dx.doi.org/10.1080/ 09638280310001639704 PMID:15164954 4. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/disabilities-convention.htm, accessed 9 May 2012). 5. Stiker HJ. Corps Infirmes et Societes. Paris, Dunod, 1997. 6. Weinberg N. Another perspective: attitudes of people with disabilities. In: Yuker HE, ed. Attitudes
toward persons with disabilities. New York, NY, Springer, 1988 (pp. 141–153). 6. 태도, 관계, 적응 175
7. Wright B. Attitudes and the fundamental negative bias: conditions and corrections. In: Yuker HE, ed. Attitudes toward persons with disabilities. New York, NY, Springer, 1988 (pp. 3–21). 8. Garland-Thomson R. Staring: how we look. Oxford, Oxford University Press, 2009. 9. Reeve D. Psycho-emotional disablism: the missing link? In: Watson N, Roulstone A, Thomas C, eds.
Routledge handbook of disability studies. Routledge, London, 2012. 10. Gallois C. Communicating disability: stereotypes, identity and motivation. In: Ng SH, Canddlin CN, Chiu CY, eds. Language matters: communication, identity and culture. Hong Kong, City University of Hong Kong Press, 2004. 11. Reinhardt JD et al. Visual perception and appraisal of persons with impairments: a randomised controlled field experiment using photo elicitation. Disability and Rehabilitation, 2011, 33:441-452. Epub 2010 Jul 23 doi: http://dx.doi.org/10.3109/09638288.2010.500344 PMID:20653364 12. Ingstad B, Whyte SR, editors. Disability and culture. Berkeley, CA, University of California Press, 1995. 13. Murray TA. Switching from hospital-based practice to home care. Home Care Provider, 1996, 1:79-82. doi: http://dx.doi.org/10.1016/S1084-628X(96)90233-6 PMID:9157912 14. Naami A, Havashi R. Perceptions about disability among Ghanaian university students. Journal of Social Work in Disability & Rehabilitation, 2012, 11:100-111. doi: http://dx.doi.org/10.1080/1536710X. 2012.677616 PMID:22630599 15. van’t Veer T et al. Quality of life for families with spina bifida in Kenya. Tropical Doctor, 2008, 38:160-162. doi: http://dx.doi.org/10.1258/td.2007.070053 PMID:18628544 16. Maloni PK et al. Perceptions of disability among mothers of children with disability in Bangladesh: implications for rehabilitation service delivery. Disability and Rehabilitation, 2010, 32:845-854. doi: http://dx.doi.org/10.3109/09638280903326063 PMID:20131951 17. Gray DB et al. A subjective measure of environmental facilitators and barriers to participation for people with mobility limitations. Disability and Rehabilitation, 2008, 30:434-457. doi: http://dx.doi.org/ 10.1080/09638280701625377 PMID:17943511 18. Noreau L, Fougeyrollas P, Boschen KA. Perceived influence of the environment on social participation among individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2002, 7:56-72. doi: http://dx.doi.org/10.1310/1UGA-EY2T-N6XP-1PHE 19. Lys K, Pernice R. Perceptions of positive attitudes towards people with spinal cord injury.
International Journal of Rehabilitation Research, 1995, 18:35-43. doi: http://dx.doi.org/10.1097/ 00004356-199501000-00004 PMID:7797318 20. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Social Science & Medicine, 1999, 48:977-988. doi: http://dx.doi.org/10.1016/S0277-9536(98)00411-0 PMID:10390038 21. Amundson R. Quality of life, disability, and hedonic psychology. Journal for the Theory of Social Behaviour, 2010, 40:374-392. doi: http://dx.doi.org/10.1111/j.1468-5914.2010.00437.x 22. Hernandez B et al. Construction and validation of the Disability Rights Attitude Scale: assessing attitudes toward the Americans with Disabilities Act (ADA). Rehabilitation Psychology, 1998,
176 척수 손상의 국제적 관점
43:203-218. doi: http://dx.doi.org/10.1037/0090-5550.43.3.203 23. Lyons M. Enabling or disabling? Students’ attitudes towards people with disabilities. The American
Journal of Occupational Therapy., 1991, 45:311-316. 24. Peterson PA, Quarstein VA. Disability awareness training for disability professionals. Disability and
Rehabilitation, 2001, 23:43-48. doi: http://dx.doi.org/10.1080/09638280150211293 PMID:11213323 25. Saketkoo L et al. Effects of a disability awareness and skills training workshop on senior medical students as assessed with self ratings and performance on a standardized patient case. Teaching and Learning in Medicine, 2004, 16:345-354. doi: http://dx.doi.org/10.1207/s15328015tlm1604_7 PMID:15582871 26. Ison N et al. “Just like you”: a disability awareness programme for children that enhanced knowledge, attitudes and acceptance: pilot study findings. Developmental Neurorehabilitation, 2010, 13:360-368. doi: http://dx.doi.org/10.3109/17518423.2010.496764 PMID:20828333 27. Rillotta F, Nettelbeck T. Effects of an awareness program on attitudes of students without an intellectual disability towards persons with an intellectual disability. Journal of Intellectual & Developmental Disability, 2007, 32:19-27. doi: http://dx.doi.org/10.1080/13668250701194042 PMID:17365364 28. Lindsay S, Edwards A. A systematic review of disability awareness interventions for children and youth. Disability and Rehabilitation, 2012,epub ahead of print PMID:22831703 29. Pointon A, Davies C. Framed: interrogating disability in the media. London, British Film Institute publications, 2008. 30. Rauch A et al. Rehabilitation needs assessment in persons with spinal cord injury following the 2010 earthquake in Haiti: a pilot study using an ICF-based tool. Journal of Rehabilitation Medicine, 2011, 43:969-975. doi: http://dx.doi.org/10.2340/16501977-0896 PMID:22031341 31. Hill R. Haiti Hospital Appeal Community Based Rehabilitation Pilot Survey –The effect of disability within families in Northern Haiti 2011. Haiti Hospital Appeal, 2011.Unpublished. 32. Phillips C. Reaching the “cocobai”: reconstruction and persons with disabilities in Haiti. Policy paper. Ottawa, FOCAL Canadian Foundation for the Americas, 2011. 33. United Nations. (UN) Panel discussion on sports for inclusive development: sports,disability and development: key to empowerment of persons with disabilities and their communities. New York, United Nations, 2011 (http://www.un.org/disabilities/default.asp?id=1574/, accessed 29.5.2012) 34. Smith DL. Disparities in patient–physician communication for persons with a disability from the 2006 Medical Expenditure Panel Survey (MEPS). Disability and Health Journal, 2009, 2:206-215. doi: http://dx.doi.org/10.1016/j.dhjo.2009.06.002 PMID:21122761 35. Aulagnier M et al. General practitioners’ attitudes towards patients with disabilities: the need for training and support. Disability and Rehabilitation, 2005, 27:1343-1352. doi: http://dx.doi.org/ 10.1080/09638280500164107 PMID:16321918 36. Furlan JC et al. Attitudes towards the older patients with spinal cord injury among registered nurses: a cross-sectional observational study. Spinal Cord, 2009, 47:674-680. doi: http://dx.doi.org/10.1038/sc.2009.23 PMID:19365396
6. 태도, 관계, 적응 177
37. Gerhart KA et al. Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Annals of Emergency Medicine, 1994, 23:807-812. doi: http://dx.doi.org/10.1016/ S0196-0644(94)70318-3 PMID:8161051 38. Dorji S, Solomon P. Attitudes of health professionals toward persons with disabilities in Bhutan. Asia Pacific Disability Rehabilitation Journal, 2009, 20:32-42. 39. WHO. World report on disability. Geneva, World Health Organization, 2011 (http://whqlibdoc.who.int/ publications/2011/9789240685215_eng.pdf, accessed 10 May 2012). 40. Lucke KT. Knowledge acquisition and decision-making: spinal cord injured individuals perceptions of caring during rehabilitation. SCI Nursing, 1997, 14:87-95. PMID:9355615 41. Bach CA, McDaniel RW. Quality of life in quadriplegic adults: a focus group study. Rehabilitation Nursing, 1993, 18:364-367. doi: http://dx.doi.org/10.1002/j.2048-7940.1993.tb00790.x PMID:7938891 42. Eddey GE, Robey KL. Considering the culture of disability in cultural competence education. Academic Medicine, 2005, 80:706-712. doi: http://dx.doi.org/10.1097/00001888-200507000-00019 PMID:15980092 43. Shakespeare T, Iezzoni LI, Groce NE. Disability and the training of health professionals. Lancet, 2009, 374:1815-1816. doi: http://dx.doi.org/10.1016/S0140-6736(09)62050-X PMID:19957403 44. Spain R. In practice from the point of view of a disabled nurse. In: Swain J, French S, eds. Disability
on equal terms. London, Sage, 2008. 45. Baum CM, Gray DB. The family and rehabilitation services: minimizing the impact on personal relationships. In: McColl M, Bickenbach J, eds. Introduction to disability. London, Saunders, 1998: 167–173. 46. Weitzenkamp DA et al. Spouses of spinal cord injury survivors, the added impact of caregiving. Archives of Physical Medicine and Rehabilitation, 1997, 78:822-827. doi: http://dx.doi.org/10.1016/ S0003-9993(97)90194-5 PMID:9344300 47. Blanes L, Carmagnani MI, Ferreira LM. Health-related quality of life of primary caregivers of persons with paraplegia. Spinal Cord, 2007, 45:399-403. doi: http://dx.doi.org/10.1038/sj.sc.3102038 PMID:17310256 48. de Azevedo GR, Santos VL. Handicapped caregiver: the social representations of family members about the caregiving process. Revista Latino-Americana de Enfermagem, 2006, 14:770-780. doi: http://dx.doi.org/10.1590/S0104-11692006000500020 PMID:17117264 49. Post MW, Bloemen J, de Witte LP. Burden of support for partners of persons with spinal cord injuries. Spinal Cord, 2005, 43:311-319. doi: http://dx.doi.org/10.1038/sj.sc.3101704 PMID:15685263 50. Gajraj-Singh P. Psychological impact and the burden of caregiving for persons with spinal cord injury (SCI) living in the community in Fiji. Spinal Cord, 2011, 49:928-934. doi: http://dx.doi.org/10.1038/sc.2011.15 PMID:21383762 51. Hagglund KJ et al. A comparison of consumer-directed and agency-directed personal assistance services programmes. Disability and Rehabilitation, 2004, 26:518-527. doi: http://dx.doi.org/10.1080/ 09638280410001672472 PMID:15204459
178 척수 손상의 국제적 관점
52. McLennan M et al. Rehabilitation learning needs: patient and family perceptions. Patient Education and Counseling, 1996, 27:191-199. doi: http://dx.doi.org/10.1016/0738-3991(95)00799-7 PMID:8788349 53. DeSanto-Madeya S. Adaptation to spinal cord injury for families post-injury. Nursing Science Quarterly, 2009, 22:57-66. doi: http://dx.doi.org/10.1177/0894318408327295 PMID:19176861 54. Schulz R et al. Improving the quality of life of caregivers of persons with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology, 2009, 54:1-15. doi: http://dx.doi.org/10.1037/ a0014932 PMID:19618698 55. Elliott TR et al. Problem-solving training via videoconferencing for family caregivers of persons with spinal cord injuries: a randomized controlled trial. Behaviour Research and Therapy, 2008, 46(11):1220–1229 (E-pub 26 August 2008). 56. Elliott TR, Berry JW. Brief problem-solving training for family caregivers of persons with recent-onset spinal cord injuries: a randomized controlled trial. Journal of Clinical Psychology, 2009, 65:406-422. doi: http://dx.doi.org/10.1002/jclp.20527 PMID:19229946 57. Aitken ME et al. Experiences from the development of a comprehensive family support program for pediatric trauma and rehabilitation patients. Archives of Physical Medicine and Rehabilitation, 2005, 86:175-179. doi: http://dx.doi.org/10.1016/j.apmr.2004.02.026 PMID:15641010 58. Holmbeck GN et al. Family functioning in children and adolescents with spina bifida: an evidence-based review of research and interventions. Developmental and Behavioral Pediatrics, 2006, 27:249-277. doi: http://dx.doi.org/10.1097/00004703-200606000-00012 59. Mullins LL et al. The influence of respite care on psychological distress in parents of children with developmental disabilities: a longitudinal study. Children’s Services (Mahwah, N.J.), 2002, 5:123-138. doi: http://dx.doi.org/10.1207/S15326918CS0502_06 60. Miles M. Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society, 2002, 17:643-658. doi: http://dx.doi.org/10.1080/ 0968759022000010425 61. Hartley S et al. How do carers of disabled children cope? The Ugandan perspective. Child: Care, Health and Development, 2005, 31:167-180. doi: http://dx.doi.org/10.1111/j.1365-2214.2004.00464.x PMID:15715696 62. Kumamoto K, Arai Y, Zarit SH. Use of home care services effectively reduces feelings of burden among family caregivers of disabled elderly in Japan: preliminary results. International Journal of Geriatric Psychiatry, 2006, 21:163-170. doi: http://dx.doi.org/10.1002/gps.1445 PMID:16416464 63. Mayo-Wilson E, Montgomery P, Dennis JA. Personal assistance for adults (19–64) with physical impairments. (Review)Cochrane Database of Systematic Reviews, 2008, Issue 3:CD006856. doi: http://dx.doi.org/10.1002/14651858.CD006856.pub2 64. Sekaran P et al. Community reintegration of spinal cord-injured patients in rural south India. Spinal Cord, 2010, 48:628-632. doi: http://dx.doi.org/10.1038/sc.2010.6 PMID:20142832 65. Mansell J. Deinstitutionalisation and community living: progress, problems and priorities. Journal of Intellectual & Developmental Disability, 2006, 31:65-76. doi: http://dx.doi.org/10.1080/13668250600686726 PMID:16782591
6. 태도, 관계, 적응 179
66. Chiriacescu D. Shifting the paradigm in social service provision: making quality services accessible for people with disabilities in South East Europe. Belgrade, Disability Monitor Initiative for South East Europe, 2008. 67. Vaidyanathan S et al. Community-care waiting list for persons with spinal cord injury. Spinal Cord, 2001, 39:584-588. doi: http://dx.doi.org/10.1038/sj.sc.3101212 PMID:11641808 68. Muller R et al. The role of social support and social skills in people with spinal cord injury – a systematic review of the literature. Spinal Cord, 2012, 50:94-106. doi: http://dx.doi.org/10.1038/ sc.2011.116 PMID:22006079 69. Bains P, Minhas AS. Profile of home-based caregivers of bedridden patients in North India. Indian
Journal of Community Medicine, 2011, 36:114-119. doi: http://dx.doi.org/10.4103/0970-0218.84129 PMID:21976795 70. Lansley P et al. Adapting the homes of older people: a case study of costs and savings. Building Research and Information, 2004, 32:468-483. doi: http://dx.doi.org/10.1080/0961321042000269429 71. Kim KM, White GW, Fox MH. Comparing outcomes of persons choosing consumer-directed or agency-directed personal assistance services. Journal of Rehabilitation, 2006, 72:32-43. 72. DICAG. Disabled children’s action group (DICAG) South Africa. Manchester, Enabling Education Network, 2001 (http://www.eenet.org.uk/resources/docs/dicag.php, accessed 22 April 2012). 73. LaPlante MP et al. Unmet need for personal assistance services: estimating the shortfall in hours of help and adverse consequences. Journal of Gerontology. Series B, Psychological sciences and
social sciences, 2004, 59:S98–S108. doi:10.1093/geronb/59.2.S98 doi: http://dx.doi.org/10.1093/geronb/ 59.2.S98 PMID:15014097 74. Benjamin AE, Matthias R, Franke TM. Comparing consumer-directed and agency models for providing supportive services at home. (Part II). Health Services Research, 2000, 35:351-366. PMID:10778820 75. Knickman JR, Stone RI. The public/private partnership behind the cash and counseling demonstration and evaluation: its origins, challenges, and unresolved issues. Health Services Research, 2007, 42:362-377. doi: http://dx.doi.org/10.1111/j.1475-6773.2006.00675.x PMID:17244288 76. Clark MJ, Hagglund KJ, Sherman AK. A longitudinal comparison of consumer-directed and agency-directed personal assistance service programmes among persons with physical disabilities.
Disability and Rehabilitation, 2008, 30:689-695. doi: http://dx.doi.org/10.1080/09638280701463878 PMID:17852213 77. Kaye HS. The personal assistance workforce: trends in supply and demand. Health Affairs, 2006, 25:1113-1120. doi: http://dx.doi.org/10.1377/hlthaff.25.4.1113 PMID:16835193 78. Warms CA et al. Measurement and description of physical activity in adult manual wheelchair users. Disability and Health Journal, 2008, 1:236-244. doi: http://dx.doi.org/10.1016/j.dhjo.2008.07.002 PMID:21122734 79. Kehn M, Kroll T. Staying physically active after spinal cord injury: a qualitative exploration of barriers and facilitators to exercise participation. BioMed Central Public Health, 2009, 9:168. doi: http://dx.doi.org/10.1186/1471-2458-9-168 PMID:19486521
180 척수 손상의 국제적 관점
80. Coble-Temple A, Mona LR, Bleecker T. Accessing personal assistance services in the workplace: struggles and successes. Journal of Vocational Rehabilitation, 2003, 18:113-123. 81. Weitzenkamp DA, Whiteneck GG, Lammertse DP. Predictors of personal care assistance for people with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2002, 83:1399-1405. doi: http://dx.doi.org/10.1053/apmr.2002.35087 PMID:12370876 82. Clevnert U, Johansson L. Personal assistance in Sweden. Journal of Aging & Social Policy, 2007, 19:65-80. doi: http://dx.doi.org/10.1300/J031v19n03_05 PMID:17613470 83. Takamine Y. The cultural perspectives of independent living and self-help movement of people with disabilities: a review of empirical findings. Asia Pacific Journal on Disability, 1998 (http://www.dinf.ne.jp/ doc/english/asia/resource/z00ap/002/z00ap00208.html, accessed 25 April 2012). 84. Bieler RB. Independent living in Latin America: progress in adapting a “First World” philosophy to the realities of the “Third World”. In: Garcia Alonso JV, ed. El movimiento de vida independiente: experiencias internacionales. Madrid, Fundacion Luis Vives, 2003: 218–242. 85. NSIS. National Serious Injury Service. Wellington, Accident Compensation Corporation, Government of New Zealand, 2008 (http://www.acc.co.nz/making-a-claim/how-do-i-make-a-claim/ECI0012, accessed 27 April 2012). 86. Riddell S et al. The development of direct payments: implications for social justice. Social Policy and Society, 2005, 4:75-85. doi: http://dx.doi.org/10.1017/S1474746404002209 87. Schopp LH et al. Evaluation of a consumer-personal assistant training project. Disability and
Rehabilitation, 2007, 29:403-410. doi: http://dx.doi.org/10.1080/09638280600835903 PMID:17364793 88. Hagglund KJ et al. Consumer-assistant education to reduce the occurrence of urinary tract infections among persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2005, 10:53-62. doi: http://dx.doi.org/10.1310/JQ0J-BX6J-RAPB-P2T4 89. van Leeuwen CMC et al. Social support and life satisfaction in spinal cord injury during and up to one year after inpatient rehabilitation. Journal of Rehabilitation Medicine, 2010, 42:265-271. doi: http://dx.doi.org/10.2340/16501977-0502 PMID:20411223 90. Whiteneck G et al. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1793-1803. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.024 PMID:15520974 91. Pearcey TE, Yoshida KK, Renwick RM. Personal relationships after a spinal cord injury. International Journal of Rehabilitation Research , 2007, 30:209-219. doi: http://dx.doi.org/10.1097/MRR. 0b013e32829fa3c1 PMID:17762766 92. Jensen MP et al. Psychosocial factors and adjustment to chronic pain in persons with physical disabilities: a systematic review. Archives of Physical Medicine and Rehabilitation, 2011, 92:146-160. doi: http://dx.doi.org/10.1016/j.apmr.2010.09.021 PMID:21187217 93. Feher S, Maly R. Coping with breast cancer in later life: the role of religious faith. Psycho-Oncology, 1999, 8:408-416. doi: http://dx.doi.org/10.1002/(SICI)1099-1611(199909/10)8:5<408::AID-PON409>3.0.CO; 2-5 PMID:10559800
6. 태도, 관계, 적응 181
94. McColl MA et al. Changes in spiritual beliefs after traumatic disability. Archives of Physical Medicine and Rehabilitation, 2000, 81:817-823. PMID:10857530 95. Matheis EN, Tulsky DS, Matheis RJ. The relationship between spirituality and quality of life among individuals with spinal cord injury. Rehabilitation Psychology, 2006, 51:265-271. doi: http://dx.doi.org/ 10.1037/0090-5550.51.3.265 96. Forchheimer MB, Tate DG. The relationship of spirituality and depression to health among people with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2007, 12:23-34. doi: http://dx.doi.org/ 10.1310/sci1203-23 97. George LK et al. Spirituality and health: what we know, what we need to know. Journal of Social
and Clinical Psychology, 2000, 19:102-116. doi: http://dx.doi.org/10.1521/jscp.2000.19.1.102 98. Franklin KL et al. Relationships among religiousness, spirituality, and health for individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2008, 14:76-88. doi: http://dx.doi.org/ 10.1310/sci1402-76 PMID:20351789 99. Babamohamadi H, Negarandeh R, Dehghan-Naveri N. Barriers to and facilitators of coping with a spinal cord injury for Iranian patients: a qualitative study. Nursing & Health Sciences, 2011, 13:207-215. doi: http://dx.doi.org/10.1111/j.1442-2018.2011.00602.x PMID:21595815 100. DeVivo MJ, Fine PR. Spinal cord injury: its short-term impact on marital status. Archives of Physical Medicine and Rehabilitation, 1985, 66:501-504. PMID:4026550 101. Crewe NM, Krause JS. Marital relationships and spinal cord injury. Archives of Physical Medicine
and Rehabilitation, 1988, 69:435-438. PMID:3377669 102. DeVivo MJ et al. Outcomes of post-spinal cord injury marriages. Archives of Physical Medicine and Rehabilitation, 1995, 76:130-138. doi: http://dx.doi.org/10.1016/S0003-9993(95)80022-0 PMID:7848071 103. Kreuter M et al. Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury. Spinal Cord, 1998, 36:252-261. doi: http://dx.doi.org/ 10.1038/sj.sc.3100592 PMID:9589525 104. Craig AR et al. Immunizing against depression and anxiety after spinal cord injury. Archives of
Physical Medicine and Rehabilitation, 1998, 79:375-377. doi: http://dx.doi.org/10.1016/S0003-9993(98) 90136-8 PMID:9552101 105. Arango-Lasprilla JC et al. Influence of race/ethnicity on divorce/separation 1, 2, and 5 years post spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2009, 90:1371-1378. doi: http://dx.doi.org/10.1016/j.apmr.2009.02.006 PMID:19651271 106. DeVivo M, Richards JS. Community reintegration and quality of life following spinal cord injury. Paraplegia, 1992, 30:108-112. 107. El Ghatti AZ, Hanson RW. Outcome of marriages existing at the time of a male’s spinal cord injury. Journal of Chronic Diseases, 1975, 28:383-388. doi: http://dx.doi.org/10.1016/0021-9681(75)90034-X PMID:1159036 108. Chen HY, Boore JR. Living with a relative who has a spinal cord injury: a grounded theory approach.
Journal of Clinical Nursing, 2009, 18:174-182. doi: http://dx.doi.org/10.1111/j.1365-2702.2008.02355.x
182 척수 손상의 국제적 관점
PMID:19120747 109. Bocarro J, Sable J. Finding the right P.A.T.H: exploring the familial relationships and the role of a community TR program in the initial years after a spinal cord injury. Therapeutic Recreation
Journal, 2003, 37:58-72. 110. Kreuter M. Spinal cord injury and partner relationships. Spinal Cord, 2000, 38:2-6. 111. Kennedy P et al. A multi-centre study of the community needs of people with spinal cord injuries: the first 18 months. Spinal Cord, 2010, 48:15-20. doi: http://dx.doi.org/10.1038/sc.2009.65 PMID:19528997 112. van Koppenhagen CF et al. Changes and determinants of life satisfaction after spinal cord injury: a cohort study in the Netherlands. Archives of Physical Medicine and Rehabilitation, 2008, 89:1733-1740. doi: http://dx.doi.org/10.1016/j.apmr.2007.12.042 PMID:18675395 113. Kreuter M, Sullivan M, Siosteen A. Sexual adjustment after spinal cord injury – comparison of partner experiences in pre- and postinjury relationships. Paraplegia, 1994, 32:759-770. doi: http://dx.doi.org/10.1038/sc.1994.122 PMID:7885719 114. Phelps J et al. Spinal cord injury and sexuality in married or partnered men: activities, function, needs, and predictors of sexual adjustment. Archives of Sexual Behavior, 2001, 30:591-602. doi: http://dx.doi.org/10.1023/A:1011910900508 PMID:11725457 115. Anderson KD et al. The impact of spinal cord injury on sexual function: concerns of the general population. Spinal Cord, 2007, 45:328-337. PMID:17033620 116. Sakellariou D, Sawada Y. Sexuality after spinal cord injury: the Greek male’s perspective. The American Journal of Occupational Therapy, 2006, 60:311-319. doi: http://dx.doi.org/10.5014/ajot.60.3.311 PMID:16776398 117. Sharma SC et al. Assessment of sexual functions after spinal cord injury in Indian patients. International Journal of Rehabilitation Research, 2006, 29:17-25. doi: http://dx.doi.org/10.1097/01.mrr. 00001855947.56810.fc PMID:16432385 118. Zhang J. A survey of the needs of and services for persons with physical disability in China. Asia
Pacific Disability Rehabilitation Journal, 2007, 18:49-85. 119. Anderson CJ et al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine, 2004, 27:S98-S106. PMID:15503711 120. Kreuter M, Sullivan M, Siosteen A. Sexual adjustment after spinal cord injury (SCI) focusing on partner experiences. Paraplegia, 1994, 32:225-235. doi: http://dx.doi.org/10.1038/sc.1994.42 PMID: 8022632 121. Kreuter M, Siosteen A, Biering-Sørensen F. Sexuality and sexual life in women with spinal cord injury: a controlled study. Journal of Rehabilitation Medicine, 2008, 40:61-69. doi: http://dx.doi.org/10.2340/16501977-0128 PMID:18176739 122. Ville I, Ravaud J-F. Tetrafigap Group. Subjective well-being and severe motor impairments: the Tetrafigap survey on the long-term outcome of tetraplegic spinal cord injured persons. Social
Science & Medicine, 2001, 52:369-384. doi: http:// dx.doi.org/10.1016/S0277-9536(00)00140-4
6. 태도, 관계, 적응 183
PMID:11330772 123. DeJong G, Branch LG, Corcoran PJ. Independent living outcomes in spinal cord injury: multivariate analyses. Archives of Physical Medicine and Rehabilitation, 1984, 65:66-73. PMID:6696605 124. Holicky R, Charlifue S. Ageing with spinal cord injury: the impact of spousal support. Disability and
Rehabilitation, 1999, 21:250-257. doi: http://dx.doi.org/10.1080/096382899297675 PMID:10381237 125. Berkman AH et al. Sexual adjustment of spinal cord injured veterans living in the community.
Archives of Physical Medicine and Rehabilitation, 1978, 59:29-33. PMID:619850 126. Murphy N, Young PC. Sexuality in children and adolescents with disabilities. Developmental
Medicine and Child Neurology, 2005, 47:640-644. PMID:16138674 127. Fronek P et al. The effectiveness of a sexuality training program for the interdisciplinary spinal cord injury rehabilitation team. Sexuality and Disability, 2005, 23:51-63. doi: http://dx.doi.org/ 10.1007/s11195-005-4669-0 128. Post MWM et al. Sexological competence of different rehabilitation disciplines and effects of a discipline-specific sexological training. Sexuality and Disability, 2008, 26:3-14. doi: http://dx.doi.org/ 10.1007/s11195-007-9068-2 129. Forsythe E, Horsewell JE. Sexual rehabilitation of women with spinal cord injury. Spinal Cord, 2006, 44:234-241. doi: http://dx.doi.org/10.1038/sj.sc.3101844 PMID:16172622 130. Fisher TL et al. Sexual health after spinal cord injury: a longitudinal study. Archives of Physical Medicine and Rehabilitation, 2002, 83:1043-1051. doi: http://dx.doi.org/10.1053/apmr.2002.33654 PMID:12161824 131. Urey JR, Henggeler SW. Marital adjustment following spinal cord injury. Archives of Physical
Medicine and Rehabilitation, 1987, 68:69-74. PMID:3813859 132. Sheija A, Manigandan C. Efficacy of support groups for spouses of patients with spinal cord injury and its impact on their quality of life. International Journal of Rehabilitation Research, 2005, 28:379-383. doi: http://dx.doi.org/10.1097/00004356-200512000-00015 PMID:16319568 133. Crewe NM, Krause JS. Marital status and adjustment to spinal cord injury. The Journal of the American Paraplegia Society, 1992, 15:14-18. 134. Holmbeck GN, Devine KA. Psychosocial and family functioning in spina bifida. Developmental Disabilities Research Reviews, 2010, 16:40-46. doi: http://dx.doi.org/10.1002/ddrr.90 PMID:20419770 135. Boyer BA et al. Prevalence and relationships of post-traumatic stress in families experiencing pediatric spinal cord injury. Rehabilitation Psychology, 2000, 45:339-355. doi: http://dx.doi.org/10.1037/ 0090-5550.45.4.339 136. Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta analysis. Journal of Pediatric Psychology, 2002, 27:699-710. doi: http://dx.doi.org/10.1093/jpepsy/27.8.699 PMID: 12403860 137. Bellin MH et al. Factors associated with the psychological and behavioural adjustment of siblings of youths with spina bifida. Families, Systems & Health, 2009, 27:1-15. doi: http://dx.doi.org/ 10.1037/a0014859 PMID:19630441
184 척수 손상의 국제적 관점
138. Skowronski E, Hartman K. Obstetric management following traumatic tetraplegia: case series and literature review. Australian and New Zealand Journal of Obstetrics and Gynaecology, 2008, 48:485-491. doi: http://dx.doi.org/10.1111/j.1479-828X.2008.00909.x PMID:19032665 139. Jackson AB. Pregnancy and delivery. http://dx.doi.org/10.1007/BF02590079
Sexuality and Disability, 1996, 14:211-219. doi:
140. Alexander CJ, Hwang K, Sipski ML. Mothers with spinal cord injuries: impact on marital, family, and children’s adjustment. Archives of Physical Medicine and Rehabilitation, 2002, 83:24-30. doi: http://dx.doi.org/10.1053/apmr.2002.27381 PMID:11782828 141. Buck FM, Hohmann GW. Personality, behaviour, values and family relations of children of fathers with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1981, 62:432-438. PMID:6456711 142. Quigley MC. Impact of spinal cord injury on the life roles of women. The American Journal of Occupational Therapy, 1995, 49:780-786. doi: http://dx.doi.org/10.5014/ajot.49.8.780 PMID:8526223 143. Duvdevany I, Buchbinder E, Yaacov I. Accepting disability: the parenting experience of fathers with spinal cord injury. Qualitative Health Research, 2008, 18:1021-1033. doi: http://dx.doi.org/10.1177/ 1049732308318825 PMID:18650559 144. Aldridge J, Sharpe D. Pictures of young caring. Loughborough, University of Loughborough, 2007. 145. Isaksson G et al. Women’s perceptions of change in the social network after a spinal cord injury. Disability and Rehabilitation, 2005, 27:1013-1021. doi: http://dx.doi.org/10.1080/09638280500030431 PMID:16096255 146. Augutis M et al. Psychosocial aspects of traumatic spinal cord injury with onset during adolescence: a qualitative study. The Journal of Spinal Cord Medicine, 2007, 30:S55-S64. PMID:17874688 147. Cornege-Blokland E et al. Quality of life of children with spina bifida in Kenya is not related to the degree of the spinal defects. Tropical Medicine & International Health, 2011, 16:30-36. doi: http://dx.doi.org/10.1111/j.1365-3156.2010.02680.x PMID:21070514 148. Mukherjee S. Transition to adulthood in spina bifida: changing roles and expectations.
TheScientificWorldJournal, 2007, 7:1890-1895. doi: http://dx.doi.org/10.1100/tsw.2007.179 PMID:18060327 149. Thibadeau JK, Ariksson-Schmidt AI, Zabel TA. The National Spina Bifida Program transition initiative: the people, the plan and the process. Pediatric Clinics of North America, 2010, 57:903-910. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.010 PMID:20883880 150. Spina Bifida. Becoming an adult living successfully with spina bifida. SB Preparations (http://www.sbpreparations.com, accessed 24 May 2012). 151. Ridosh M et al. Transition in young adults with spina bifida: a qualitiative study. Child: Care, Health and Development, 2011, 37:866-874. doi: http://dx.doi.org/10.1111/j.1365-2214.2011.01329.x PMID: 22007987 152. Ruck J, Dahan-Oliel N. Adolescence and young adulthood in spina bifida: self-report on care received and readiness for the future. Topics in Spinal Cord Injury Rehabilitation, 2010, 16:26-37.
6. 태도, 관계, 적응 185
doi: http://dx.doi.org/10.1310/sci1601-26 153. Bellin MH, Kovacs PJ, Sawin KJ. Risk and protective influences in the lives of siblings of youth with spina bifida. Health & Social Work, 2008, 33:199-209. doi: http://dx.doi.org/10.1093/hsw/ 33.3.199 PMID:18773795 154. Webster G, Hindson LM. The adaptation of children to spinal cord injury of a family member: the individual’s perspective. SCI Nursing, 2004, 21:82-87. PMID:15553078 155. Gerschick TJ, Miller AS. Coming to terms: masculinity and physical disability. In: Sabo DF, Gordon DF, eds. Men’s health and illness: gender, power, and the body. Thousand Oaks, CA, Sage Publications, 1995 183–204. 156. Buchanan KM, Elias LJ. Psychological distress and family burden following spinal cord injury: concurrent traumatic brain injury cannot be overlooked. Axone (Dartmouth, N.S.), 2001, 22:16-17. PMID:14625968 157. Post MW et al. Predictors of health status and life satisfaction in spinal cord injury. Archives of
Physical Medicine and Rehabilitation, 1998, 79:395-401. doi: http://dx.doi.org/10.1016/S0003-9993(98) 90139-3 PMID:9552104 158. Charlifue S, Gerhart K. Changing psychosocial morbidity in people aging with spinal cord injury. NeuroRehabilitation, 2004, 19:15-23. PMID:14988584 159. Livneh H, Antonak RF. Psychosocial adjustment to chronic illness and disability. Gaithersburg, MD, Aspen Publishers, 1997. 160. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http://dx.doi.org/10.1038/sc.2011.182 PMID:22270190 161. Krause JS. Aging, life satisfaction, and self-reported problems among participants with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2010, 15:34-40. doi: http://dx.doi.org/10.1310/ sci1503-34 162. Moos RH, Holahan CJ. Adaptive tasks and methods of coping with illness and disability. In: Martz E, Livneh H, eds. Coping with chronic illness and disability: theoretical, empirical and clinical
aspects. New York, NY, Springer, 2007. 163. van Leeuwen CMC et al. Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review. Spinal Cord, 2012, 50:174-187. PMID:22042298 164. van Lankveld W, van Diemen T, van Nes I. Coping with spinal cord injury: tenacious goal pursuit and flexible goal adjustment. Journal of Rehabilitation Medicine, 2011, 43:923-929. PMID:21947183 165. Chappell P, Wirz S. Quality of life following spinal cord injury for 20−40 year old males living in Sri Lanka. Asia Pacific Disability Rehabilitation Journal, 2003, 14:162-178. 166. Salick EC, Auerbach CF. From devastation to integration: adjusting to and growing from medical trauma. Qualitative Health Research, 2006, 16:1021-1037. doi: http://dx.doi.org/10.1177/1049732306292166 PMID:16954523 167. Chau L et al. Women living with a spinal cord injury: perceptions about their changed bodies. Qualitative Health Research, 2008, 18:209-221. doi: http://dx.doi.org/10.1177/1049732307312391
186 척수 손상의 국제적 관점
PMID:18216340 168. Slivinski J, Mehta S, Teasell RW. Depression following spinal cord injury. In: Eng JJ et al., eds.
Spinal cord injury rehabilitation evidence, Version 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010. 169. Orenczuk S et al. Depression following spinal cord injury. In: Eng JJ et al., eds. Spinal cord injury rehabilitation evidence, Version 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010. 170. Mehta S et al. An evidence-based review of the effectiveness of cognitive behavioral therapy for psychosocial issues postspinal cord injury. Rehabilitation Psychology, 2011, 56:15-25. doi: http://dx.doi.org/10.1037/a0022743 PMID:21401282 171. King C, Kennedy P. Coping effectiveness training for people with spinal cord injury. The British
Journal of Clinical Psychology, 1999, 38:5-14. doi: http://dx.doi.org/10.1348/014466599162629 PMID:10212733 172. Kennedy P et al. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. The British Journal of Clinical Psychology, 2003, 42:41-52. doi: http://dx.doi.org/ 10.1348/014466503762842002 PMID:12675978 173. Duchnick JJ, Letsch EA, Curtiss G. Coping effectiveness training during acute rehabilitation of spinal cord injury/dysfunction: a randomized clinical trial. Rehabilitation Psychology, 2009, 54:123-132. doi: http://dx.doi.org/10.1037/a0015571 PMID:19469601 174. Sin NL, Lyubomirsky S. Enhancing well-being and alleviating depressive symptoms with positive psychology interventions: a practice-friendly meta-analysis. Journal of Clinical Psychology, 2009, 65:467-487. doi: http://dx.doi.org/10.1002/jclp.20593 PMID:19301241 175. Peter C et al. Psychological resources in spinal cord injury: a systematic literature review. Spinal Cord, 2012, 50:188-201. doi: http://dx.doi.org/10.1038/sc.2011.125 PMID:22124343 176. Zahl ML et al. SCI/D forum to increase active living: the effect of a self-efficacy and self-affirmation based SCI/D forum on active living in adults with spinal cord injury/disease. SCI Psychosocial Process, 2008, 21:5-13. 177. Rose A et al. The effect of a self-efficacy based forum on life satisfaction for individuals with spinal cord injury or disease. Annual in Therapeutic Recreation, 2008, 16:49-56. 178. Kennedy P, Taylor N, Hindson L. A pilot investigation of a psychosocial activity course for people with spinal cord injuries. Psychology Health and Medicine, 2006, 11:91-99. doi: http://dx.doi.org/ 10.1080/13548500500330494 PMID:17129898 179. Latimer AE, Ginis KAM, Arbour KP. The efficacy of an implementation intention intervention for promoting physical activity among individuals with spinal cord injury: a randomized controlled trial. Rehabilitation Psychology, 2006, 51:273-280. doi: http://dx.doi.org/10.1037/0090-5550.51.4.273 180. Arbour-Nicitopoulos KP, Ginis KA, Latimer AE. Planning, leisure-time physical activity, and coping self-efficacy in persons with spinal cord injury: a randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 2009, 90:2003-2011. doi: http://dx.doi.org/10.1016/j.apmr.2009.06.019 PMID:19969161
6. 태도, 관계, 적응 187
181. Tate DG, Forchheimer M. Enhancing community reintegration after inpatient rehabilitation for persons with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 1998, 4:42-55. doi: http://dx.doi.org/10.1310/FK0R-2K94-BN99-52FY 182. Wiles R, Cott C, Gibson BE. Hope, expectations and recovery from illness: a narrative synthesis of qualitative research. Journal of Advanced Nursing, 2008, 64:564-573. doi: http://dx.doi.org/10.1111/ j.1365-2648.2008.04815.x PMID:19120569 183. Kortte KB et al. Positive psychological variables in the prediction of life satisfaction after spinal cord injury. Rehabilitation Psychology, 2010, 55:40-47. doi: http://dx.doi.org/10.1037/a0018624 PMID:20175633 184. Payne JA. The contribution of group learning to the rehabilitation of spinal cord injured adults.
Rehabilitation Nursing, 1993, 18:375-379. doi: http://dx.doi.org/10.1002/j.2048-7940.1993.tb00792.x PMID:7938893 185. House LA et al. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives. Spinal Cord, 2009, 47:882-886. doi: http://dx.doi.org/10.1038/sc.2009.64 PMID:19528994 186. SCIA. Spinal Cord Injuries Australia (http://scia.org.au, accessed 5 April 2013). 187. Killeen G. Taxi discrimination complaint settled. Accord, Winter 2011, pp. 10−11 (http://scia.org.au/images/ SCIA-media/publications/accord/Accord%202011%20Winter.pdf?bcsi_scan_97961A1EAF8C426F=x54b UmSQODtKN2kJiJYmnwwV7N5VAAAAtIQqDg==&bcsi_scan_filename=Accord%202011%20Winter.pdf, accessed 20 February 2012). 188. ESCIF. European Spinal Cord Injury Federation (http://www.escif.org/, accessed 20 March 2012). 189. GSCICN. Global Spinal Cord Injury Consumer Network (http://globalsci.net/, accessed 19 April 2012). 190. Livability Ireland (http://www.livability.ie, accessed 17 April 2013). 191. Motivation. Freedom through mobility (http://www.motivation.org.uk, accessed 26 April 2013). 192. Gilson SF, Tusler A, Gill C. Ethnographic research in disability identity: self-determination and community. Journal of Vocational Rehabilitation, 1997, 9:7-17. doi: http://dx.doi.org/10.1016/ S1052-2263(97)00017-2 193. Campbell J, Oliver M. Disability politics: understanding our past, changing our future. London, Macmillan, 1996. 194. Ville I et al. Disability and a sense of community belonging. A study among tetraplegic spinal-cord-injured persons in France. Social Science & Medicine, 2003, 56:321-332. doi: http://dx.doi.org/10.1016/S0277-9536(02)00030-8 PMID:12473317 195. Manns PJ, Chad K. Determining the relation between quality of life, handicap, fitness, and physical activity for persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1999, 80:1566-1571. doi: http://dx.doi.org/10.1016/S0003-9993(99)90331-3 PMID:10597807 196. Monnazzi G. Paraplegics and sports: a psychological survey. International Journal of Sport Psychology, 1982, 13:85-95.
188 척수 손상의 국제적 관점
197. Hanson CS, Nabavi D, Yuen HK. The effect of sports on level of community integration as reported by persons with spinal cord injury. The American Journal of Occupational Therapy, 2001, 55:332-338. doi: http://dx.doi.org/10.5014/ajot.55.3.332 PMID:11723975 198. Madorsky JGB, Madorsky A. Wheelchair racing: an important modality in acute rehabilitation after paraplegia. Archives of Physical Medicine and Rehabilitation, 1983, 64:186-187. PMID:6838349 199. McVeigh SA et al. Influence of sport participation on community integration and quality of life: a comparison between sport participants and non-sport participants with spinal cord injury. The
Journal of Spinal Cord Medicine, 2009, 32:115-124. PMID:19569458 200. Martin Ginis KA et al. Physical activity and subjective well-being among people with spinal cord injury: a meta-analysis. Spinal Cord, 2010, 48:65-72. doi: http://dx.doi.org/10.1038/sc.2009.87 PMID:19581918 201. Slater D, Meade MA. Participation in recreation and sports for persons with spinal cord injury: review and recommendations. NeuroRehabilitation, 2004, 19:121-129. PMID:15201471 202. Tasiemski T, Brewer BW. Athletic identity, sport participation and psychological adjustments in people with spinal cord injury. Adapted Physical Activity Quarterly; APAQ, 2011, 28:233-250. PMID:21725116 203. Anneken V et al. Influence of physical exercise on quality of life in individuals with spinal cord injury. Spinal Cord, 2010, 48:393-399. doi: http://dx.doi.org/10.1038/sc.2009.137 PMID:19841634 204. Wu SK, Williams T. Factors influencing sport participation among athletes with spinal cord injury.
Medicine and Science in Sports and Exercise, 2001, 33:177-182. doi: http://dx.doi.org/10.1097/ 00005768-200102000-00001 PMID:11224802 205. Cooper M. Come, fly with me! Sports N’Spokes, 2004, 30:8-13. 206. Martin B. Bike on! Sports N’Spokes, 2001, 27:43-49. 207. Thompson M. Flip pin’out. Sports N’Spokes, 1999, 25:16-18. 208. Motivation. The affordable, quality sports wheelchair 2011. (http://www.motivation.org.uk/sports/sportswheelchair, accessed 14 April 2011).
6. 태도, 관계, 적응 189
Spinal cord injury and enabling environments
7. 척수손상과 할 수 있게 하는 환경
“병원과 몇몇 재활 시설에서 수개월을 보낸 후 지역 사회로 돌아왔을 때, 여러 가지 어려움에 부딪혔다. 첫째, 5층 건물의 3층에 위치한 이전 직장으로 복귀할 수 없었다. 왜냐하면 나는 더 이상 계단을 이용할 수 없고, 그 건물에는 엘리베이터가 없었기 때문이다. 둘째, 지역 사회의 건물 구조 때문에 많은 서비스에 접근할 수가 없었다. 이런 서비스를 받기 위해 접근 가능한 장소를 찾아 먼 거리를 이동해야만 했다. 내가 총격을 당했을 때, 차를 잃어버려서 대중교통을 이용할 수밖에 없었다. 그러나 많은 운전사들이 휠체어 장애인을 승차시켜 주려 하지 않았다. 이런 지역에서 법을 집행하려면 정부는 많은 일을 해야 한다.” (로버트, 우간다)
“병원에 대한 접근은 또 다른 문제였다. 대형 병원은 대부분 휠체어 접근이 가능하지만, 치과, 안과와 같은 소규모 의원의 접근성은 좋지가 않았다. 어떤 의원은 엘리베이터도 없는 건물의 2층, 3층에 위치한 경우도 있었다. 이런 상황에서, 가끔은 내 휠체어를 들어서 계단을 올라가는데, 이는 어렵고 위험한 일이었다. 그러나 그렇게 할 수밖에 없는 경우가 많았다. 병원의 화장실도 대개는 휠체어 접근이 용이하지 않았다. 아마도 접근성이 부족한 화장실은 다음과 같은 태도의 문제에서 기인한 것으로 생각된다. ‘척수손상 환자가 많지도 않은데 왜 쓸데없이 공간을 낭비해야 하지?’” (알렉시스, 인도)
“일을 보기 위해 전동 휠체어를 이용해 외출할 때, 나는 택시나, 대중교통 시스템, 혹은 고속 열차를 이용하곤 한다. 그러나 이런 교통수단은 장애인 할인을 받는다고 해도 여전히 이용 요금이 비싸다. 리프트를 장착한 공영 버스는 소수에 불과하고, 이마저도 일주일 전에 사전 예약을 해야 이용할 수가 있다. 그래서 만약 응급 상황이라도 발생하면, 공영 버스 교통편에 의존하던 사람은 교통수단을 이용할 수 없게 된다. 게다가, 계단이 없는 노선버스 정류장은 소수에 불과하다. 이런 이유 때문에, 나는 출퇴근을 위해서 대부분 택시를 이용하고 있으며, 이용 요금은 매우 비싼 편이다.” (이 고한, 대만)
“집에서 외출하는 것은 매우 어려운 일이다. 보도는 평평하지 않고 관리 상태도 아주 좋지 않다. 이동할 때는 항상 다른 사람에게 의존할 수밖에 없다. 내가 살고 있는 도시 지역의 대중교통 상태가 매우 좋지 않고, 심지어 도움을 받아도 이용하기가 매우 어렵다. 나는 독립적으로 사는 것이 불가능하다. 이런 상황에서 내가 어떻게 사회에 참여할 수 있겠는가? 절망감을 느낄 수밖에 없다. 그래서 코카인과 마리화나를 복용하고 있으며 기타를 치고 있다.” (디에고, 아르헨티나)
“지진 발생으로 원래 살던 집이 완전히 파손됐기 때문에 이후에 집을 다시 지었다. 그러나 나와 가족은 어떻게 해야 내가 움직이기 편한 환경을 만들 수 있는지에 대한 아이디어가 전혀 없었다. 내가 움직이기 쉽도록 화장실과 주방을 NGO에서 개조해 주었다. 개조 이전에는 화장실에 들어갈 수도 없었지만, 지금은 혼자서 목욕을 할 수도 있다. 휠체어에 앉아서 요리도 할 수 있다. 내가 집 안에 있는 경우, 모든 것이 편리하고 큰 문제가 없다.” (첸, 중국)
7 척수손상과 할 수 있게 하는 환경 물리적 환경은 척수장애인 참여의 촉매제가 될 수도 있고 참여를 가로막는 장애물이 될 수도 있다. 접근성은 장애인 권리 협약 3조 일반 원칙에서 언급한 크로스커팅(cross-cutting) 원칙 중 하나이며, 동 협약 9조에서는 건물과 교통을 포함한 접근성의 중요성을 구체적으로 강조하고 있다(1). 접근성은 지역 사회에서의 자립 생활과 (19조), 삶의 모든 영역에 완전히 참여하기 위한 권리로 강조되고 있다. 한편 접근성 보장의 실패는 차별로 간주될 수 있다. 이 장에서는 접근성 보장에 필요한 주택, 교통, 공공 편의 시설 등에 초점을 맞출 것이다. 물리적 환경과 교통은 척수장애인의 접근성을 가로막는 주요한 환경적 장애물이라고 할 수 있다(2-6). 참여와 관련해 이러한 요인이 미치는 영향에 대한 근거는 여전히 빈약하다(7). 접근성 조치는 척수 장애인의 다양한 요구에 대응할 필요가 있다. 집 안의 휠체어 접근 환경을 구축하는 것은 매우 중요 하다. 그러나 만약 그 접근성이 현관에서 끝나게 된다면, 장애인은 지역 사회에서 돌아다닐 수도, 교통을 이용할 수도, 교육, 고용, 기타 사회적 서비스에 참여할 수도 없을 것이고, 환경은 여전히 장애물로 남게 된다. 접근성 보장 전략은 비용과 인적 자원에 좌우되지만, 점진적인 향상은 항상 가능하다(8). 장애인 권리 협약을 비준한 국가는 ‘점진적 실현’의 개념에 따라 완전한 접근성 보장을 향한 개선의 증거를 제시해야 한다. 척수장애인을 위한 접근성의 보장은 또한 모든 사람이 편하게 생활할 수 있는 세상을 만들 수 있다.
척수장애인에 대한 장애물
지역 사회 재통합은 척수장애인이 환경적 장애물을 극복하는 정도에 달려 있을 것이다. 이 섹션에서는 환경적 장애물에 대해 차근차근히 살펴볼 것이다. 먼저 척수손상을 당한 사람이 재활 이후에 돌아가게 되는 주택에서부터 시작해, 다음에는 지역 사회 참여에 있어 중요한 요소인 교통을 확인해 보고, 마지막 으로 교육권과 노동권 충족에 필요한 학교와 직장 같은 공공건물의 접근성을 살펴보도록 하겠다.
▶ 주택 주택은 삶에 있어서 가장 중요한 환경이다(9-11). 성인 척수장애인의 경우, 만약 계단, 협소한 화장실, 접근 불가능한 주방과 같이 자신의 주거 공간이 장애물로 인해 접근이 어려우면, 재활 병원을 떠나 7. 척수손상과 할 수 있게 하는 환경 193
기가 어려울 것이다(12-14). 이 경우에, 장애인은 ‘자신의 집에 갇힌 수용자’가 되고 말 것이다(15). 주택의 접근성이 보장되지 않아서 집으로 돌아갈 수 있는 환자가 병원에 어쩔 수 없이 머무르는 경우에 종종 ‘베드 블로킹(bed-blocking)’라고 불리우는 결과를 초래하기도 한다.(16, 17). 주택 접근성 보장에 관한 요구는 장애인이 당면한 세계적인 문제이며, 이용 가능한 데이터가 상당히 제한적이긴 하지만 특히 척수손상과 같이 이동에 장애가 있는 사람들에게는 더 큰 문제이다. 남아 프리카공화국의 연구 사례에서는 일반적으로 장애인이 거주하는 주택이 비장애인 거주 주택보다 열악한 것으로 드러났다(18). 세계의 다른 지역에서 진행된 연구를 보면, 거의 가족과 함께 사는 것이 일반적인 현상임에도 불구하고 대부분의 저소득 국가에 걸쳐서 이동과 다른 기능에 제약이 있는 사람들은 자신의 집에서 독립적으로 생활하는 데 제약을 받고 있다(19, 20). 심지어 주택 소유율이 높은 나라에서도, 주택 개조를 위한 비용 지원이 여의치 않은 편이다(21). 예를 들어, 영국에서 진행된 연구에 따르면, 장애인을 위한 접근 가능한 주택 지원과 주택 개조 비용 지원 측면에서 부족한 것으로 나타났다(22-24). 약 78,000명의 이르는 영국 휠체어 이용자의 주택에 대한 요구도 충족되지 못한 것으로 추정된다(25). 만약 척수장애인이 자신의 주택을 소유할 수 없고 친척과 함께 사는 것도 불가능한 경우에, 사회 주택(social housing)이 하나의 대안이 될 수도 있다(26, 27). 유럽에서 사회 주택의 공급 범위는 전체 주택의 2% 미만(에스토니아, 그리스, 스페인)부터 35%(네덜란드)까지 나타난다(28). 일반적으로 사회 주택에 대한 수요는 공급보다 휠씬 높은 편이다(26). 심지어 사회 주택이 있는 경우에도, 접근성이 보장된 주택은 매우 드문 편이다. 엘살바도르, 인도, 태국과 같은 국가에서는 장애인을 위한 사회 주택 할당제를 실시하고 있지만, 접근성 문제로 인해 여전히 주택 부족 현상이 나타나고 있다(19, 20). 아이러니하게도 접근 가능한 사회 주택을 종종 비장애인이 차지하는 경우도 있다. 영국에서는 휠체어 사용이 가능한 표준 주택의 22%만이 휠체어 이용자를 포함한 세대에 배정 되었다(25).
▶ 교통 교통 접근성은 집 외부에서 진행되는 교육, 고용, 사회적 활동의 참여를 위해 요구되는 부분이다. 대중교통은 종종 척수장애인이 접근하기가 어렵다(6, 29). 경사로, 리프트, 안전 고정 벨트가 없는 경우도 있고, 관리가 부실하거나 안전하지 않고 (30), 교통 종사원이 접근성 관련 내용을 교육받지 않은 경우도 있다(31). 노선버스나 철도 교통수단의 경우, 원하는 목적지에서 버스나 열차 정류장이 가깝지 않을 수도 있다(30). 휠체어가 들어갈 수 있는 택시같이 이용자의 요구에 의해 운행되는 대중교통 시스템은 사용 며칠 전에 예약해야 하는 경우도 있어서, 이용의 유연성이 떨어지는 편이다 (30). 운전 제어 장치 개조 비용과 차량의 개조 비용이 엄두도 못 낼 정도로 높지만, 만약 충분한 자원(재정과 기술)이 있다면, 민간 차량도 대안이 될 수 있다. 척수장애인의 항공 여행을 위해
194 척수 손상의 국제적 관점
공항과 비행기의 접근성이 보장되어야 한다. 그러나 기내 화장실은 종종 접근이 불가능하고, 어떤 경우에는 법적으로 혼자서 이동이 불가능한 사람의 항공 여행을 금지하는 경우도 있다(32). 이러한 실질적인 문제의 기저에는 시스템의 실패가 존재하고 있다. 예를 들어, ‘트래블 체인(travel chain)’이 끊어지게 된다는 것은(즉, 여행의 한 부분이 접근 불가능한 경우), 휠체어 이용자가 자신의 최종 목적지에 도착할 수 없게 됨을 의미한다(33). 심지어 법에서 세밀하게 대중교통에 대한 접근성 보장을 명시하고 있을지라도, 특히 개발 도상국 같은 경우에 법을 집행할 충분한 수단이 부족해서 법 실행이 효과적이지 못할 수도 있다(34). 만약 법으로 택시 회사가 새로운 밴 차량을 구매할 때 장애인의 접근성 보장을 요구한다면, 택시 회사는 법의 규제를 피하기 위해 중고 밴 차량을 구매 할 수도 있다(35). 보조 교통수단(paratransit)과 특별 교통 서비스에 이용되는 접근 가능한 택시와 미니버스의 구매 비용이 높기 때문에, 교통 서비스를 경제적이고 지속 가능하게 운영하는 것이 어려울 수도 있다(35-37).
▶ 공공건물 공공건물에 대한 접근성 미확보는 척수장애인의 참여를 방해하게 된다(38, 39). 연구에 따르면, 휠체어 이용자의 참여에 중요한 영향을 주는 접근성의 주요 5개 분야는 주차장, 공공건물에 대한 진입로, 경사로, 현관, 화장실로 나타났다(40, 41). 예를 들어, 남아프리카공화국의 연구 자료를 통 해서 장애인용 화장실을 완벽하게 갖춘 병원은 10% 미만임을 알 수 있다(42). 척수장애인이 쉽게 열기에는 종종 문이 너무 무거운 경우도 있고, 목발을 짚고 보행이 가능한 척수장애인에게 필요한 난간이 없는 경우도 있으며, 보행로가 울퉁불퉁하거나 자갈로 되어 있거나, 보행로의 폭이 너무 좁거나, 경사가 너무 급하거나, 커브 컷(curb cut: 보행로와 차도 사이에 연석 대신 경사로를 설치 하거나 도로와 평평하게 만들어 휠체어 등이 이동하기 쉽게 만드는 것 – 역자 주)이 부족한 경우, 휠체어 이용자의 공공건물 접근을 제한하는 원인이 된다(43-45). 안전하지 않은 도로 건널목, 도로, 보행로는 휠체어 이용자와 차량의 충돌 사고로 이어져 심각한 부상을 일으킬 수도 있다(46-48). 접근성 문제와 관련된 대처 수준은 다양하게 나타난다. 미국의 몇몇 도시에서는 1980년대 이후에 건축된 건물의 경우 접근성 확보를 위한 편의 시설 설치율이 매우 높아서 어떤 도시에서는 97%를 보여 주는 사례도 있다(49). 그러나 터키, 아랍에미리트, 짐바브웨 같은 국가에서는 이 비율이 절반 이하로 나타나고 있으며 접근성 개선을 위한 노력이 매우 느린 것으로 보고되고 있다 (50-52). 나이지리아의 이바단 같은 지역은 공공건물의 휠체어 접근성이 18% 미만으로 더욱 심각한 상황이고, 태국, 방콕에서는 휠체어 이용자의 완벽한 접근을 보장하는 공공·상업 건물이 거의 전무한 것으로 조사되었다(54). 교통 관련해서는, 이행되지 않는 경우에, 법, 정책, 기준을 가지고 있는 것만으로는 충분하지 않다. 아시아 태평양 지역 36개국의 최근 조사에 따르면, 25개국은 공공건물과 교통에 관련된 접근성 7. 척수손상과 할 수 있게 하는 환경 195
규정이 있는 것으로 파악됐으나 이러한 법이나 기준은 의무 규정이 아니었으며 강제적인 이행 시스템도 없는 것으로 나타났다(55). 114개국을 대상으로 한 유엔의 조사에서는, 거의 절반의 국가가 공공건물에 대한 접근성 정책이 있는 것으로 나타났으나, 대부분의 나라에서 접근성을 홍보하는 공공 교육 프로그램이 부족하고, 정책 이행과 관련한 예산을 배정하지 않거나 혹은 이런 정책을 집행, 모니터링 하기 위한 공공 기관이 없었다(1). 전 영역에 걸쳐서, 접근성 향상을 가로막는 원인은 다음과 같다. • 규제할 수 있는 프레임워크(체계)와 접근성 기준의 부재 • 강제적인 이행 시스템의 미비 • 접근성에 초점을 맞춘 재정 자원과 공공 조달 정책 미비 • 제도적인 제약(기관 상호 간, 공공-민간 간의 협력 부족 혹은 미숙한 계획 역량) • 모든 차원에서 접근성의 필요성과 혜택에 관한 일반적인 인식 부족 • 정책의 개발과 이행에 있어 이용자 참여의 부재
장애물에 대한 대처
도시와 농어촌 지역 모두에서 대중에게 개방된 혹은 제공되는 물리적 환경 , 교통 , 기타 시설과 서비스에 이용에 있어서 척수장애인이 일상적으로 부딪히는 거의 모든 장애물은 극복할 수가 있다. 게다가, 이를 위해, 혁신적이고 경제적으로 실현 가능한 우수 사례들을 활용할 수 있다.
▶ 크로스커팅(Cross-cutting) 대책 다음에 설명하는 대책들은 주택, 교통, 공공건물의 환경적 영역에 걸쳐 관련된 내용이다.
유니버설 디자인 채택은 장애인의 접근성 보장뿐만 아니라 건물, 교통, 지역 사회 이동에 어려움을 겪고 있는 노인, 부모, 기타 다른 사람들에게도 도움이 된다(14, 33).
접근성 기준 개발은 척수장애인을 포함해 휠체어 이용자의 접근성을 보장할 수 있다. 장애인 권리 협약은 당사국이 공공 편의 시설에 대한 최소한의 기준 이행 내용을 마련, 공표, 모니터링할 것을 요구하고 있다(1). 이 내용에는 커브 컷, 안전한 도로 횡단로, 접근 가능한 진입로와 같은 건물에 대한 접근성뿐만 아니라 건물 내부, 특히 화장실에 대한 접근도 포함되어야 한다. 비록 주요한 장애물을 제거하는 것이 휠체어 이용자에게 상당한 차이를 만들어 낼 수 있을지라도, 완전한 접근성 보장 이라는 목표는 항상 주지하여야 한다. 국내적, 국제적인 세부 기준은 이미 사용할 수 있도록 마련 되어 있으며 (예: (41, 56)), 이 기준이 저·중소득 국가에서도 지속적으로 적용되고 있다. 예를 들어, 우간다에서는 우간다 장애인 협회(National Union of the Disabled Persons of Uganda)가 여성, 노동, 사회 개발부(Ministry of Gender, Labour and Social Development )와 협력하여 접근성
196 척수 손상의 국제적 관점
기준을 만들었다(57). 기준은 기술과 수요의 변화에 따라 수정될 필요가 있을지도 모른다(예: 휠체어 디자인, 비만 출현율의 증가).
접근성 기준을 이행해야 한다. 미국에서, 자발적 기준은 1961년에 법으로 만들어졌으나, 곧이어 효과가 없는 것으로 밝혀져 1968년에 의무 기준으로 대체되었다(58). 그리고 이 법은 10년이 지난 후, 개인이 접근성을 보장하지 않는 건물에 대해 구제를 신청할 수 있는 절차에 의해 강화되었다. 이러한 조치는 1990년의 미국 장애인법(Americans with Disabilities Act)의 조항에 의해 더욱 강화되었다. 현재 지방 자치 단체와 기업들은 소송에 휘말리는 것을 피하기 위해 새로운 건축물을 계획할 때, 접근성을 반영하고 있다. 강제적인 이행은 이런 기준 준수를 모니터링하기 위한 책임 기관이나 기타 담당자(focal point)가 필요하다.
접근성을 증진하기 위한 투자의 우선순위를 정하고 접근성 결과를 모니터링하는 과정에 다른 장애인 그룹과 더불어 척수장애인을 참여시켜야 한다. 장애인은 접근성 개선을 위한 기준 개발, 접근성 실사, 준수 여부 파악 (예: (59)), 접근성 모니터링, 홍보 과정에 참여해야 한다. 예를 들어, 캐나다
장애인 협회(Council of Canadians with Disabilities)는 거의 30년 동안 도시와 지방에서 접근성 기준 이행을 모니터링하고 건물 내의 휠체어 이용에 필요한 공간 문제의 자문을 위한 활동을 해 왔다(61). 남미에서는, 멕시코의 리브레 액세소(Libre Acceso)와 브라질의 자립 생활 센터와 같은 장애인 단체들이 교통 접근성 캠페인에 활발하게 참여해 왔고, 접근성 가이드라인의 개발과 공표 과정에 참여하고, 이의 활용을 홍보하는 활동을 해 왔다(62). 일본과 미국의 장애인들은 평가와 협의 과정에서 의견 개진을 해 오며 접근성 이행 모니터링에 있어 중요한 역할을 수행해 왔다(63).
장애인이 당면한 접근성 문제에 대해 이해 당사자를 교육시켜야 한다. 공공 영역에서 접근성의 인식과 지식은 중요하다. 장애 인식 개선 훈련과 장애 평등 훈련은 태도를 바꾸고 해당 시설을 이용 하는 장애인을 존중하는 마음을 갖도록 하는 데 도움이 된다. 접근성 보장의 필요성과 해결책에 대한 기본 기술 정보도 정책을 개발하고 집행하는 사람들에게 도움이 된다. 건축가, 공학자, 계획 입안자 양성을 위한 대학과 현장 훈련 프로그램에 유니버설 디자인과 접근성의 원칙, 실행 내용을 기본 요소로 포함시켜야 한다(60). 예를 들어, 2008년 말레이시아 장애인법(People with
Disabilities Act)이 제정된 이후, 사람들은 말레이시아 대학이 연구를 장려하고, 접근성 해결책을 확산시키고, 대중 인식 개선을 위해 ‘배리어 프리 건축’ 코스를 도입해야 한다고 요구해 왔다. 콜롬 비아의 국립 대학은 환경과 교통수단 구축을 위한 접근성 매뉴얼을 준비했다(19).
대중에 시설과 서비스를 공개 혹은 제공하는 민간 부분은 장애인을 위한 접근성의 모든 측면을 고려해야만 한다. 주택 건설 및 가구와 관련된 영리 기업은 자신들의 디자인과 개발 과정에 유니버설 디자인 원칙을 반영하고, 국가적 차원에서 이러한 정보를 정책 개발자들과 공유할 수 있도록 장려 되어야 한다(64, 65).
7. 척수손상과 할 수 있게 하는 환경 197
접근성 향상과 관련해 효과적인 추가 연구가 필요하다. 유니버설 디자인의 전문성에도 불구하고, 가정에서부터 지역 사회에 이르기까지 모든 상황에서 효과적으로 접근성을 향상시키기 위한 지식 에는 여전히 격차가 존재한다. 우리는 물리적 환경의 제약이라는 게 어떤 상황인지, 그리고 장애인의 참여를 촉진하기 위해서 이를 어떻게 개선해야 할지에 대해서는 잘 모르고 있다(6, 7, 66- 69). 비록 어느 정도 중요한 진전이 있었을지라도, 가장 시급히 연구가 진행되어야 할 우선적인 분야는 현재 구축된 환경이 이동에 제약이 있는 사람들에게 얼마나 장애물이 되고 있는지 그 정도를 평가할 수 있는 신뢰할 수 있고 유효한 도구와 관련된 부분이다(3, 68, 70-74). 접근 불가능한 정도를 측정, 평가하는 것은 기준을 개발하기 위해 근거에 기반한 해결책을 만드는 첫 번째 단계이다. 근거는 또한 접근 가능한 환경을 만들 때, 경제적, 사회적 혜택을 제시하기 위해 필요하다.
▶ 주택 주택 관련 장애물에 대한 해결책에는 기존 주택의 개조(사회 주택 포함)와 접근성이 보장된 새로운 주택 신축 등을 포함시킬 수 있다.
척수장애인을 위한 적절한 주택 개조는 광범위한 사회적 혜택을 가져온다. 주택 개조는 척수장애인이 병원과 기타 비용이 많이 들어가는 치료 환경을 벗어나는 데 도움을 줄 수 있다. 게다가, 주택 개조는 돌봄 제공자의 긴장 완화, 사고 예방, 전반적인 건강과 신체 기능 향상, 사회적인 고립 방지에도 도움이 될 수 있다(14, 75-78). 기능 촉진을 위한 주택 환경 개조는 범위가 다양하며 시간을 두고 변화될 수 있다. 기본적인 주택 개조의 특징으로는 경사로, 마찰력이 약한 바닥 표면, 높이가 낮은 작업 환경 등을 들 수 있다. 조금 더 비용이 드는 개조에는 계단 승강기나 엘리베이터, 인터폰, 기타 통제 시스템 설치 등이 포함된다(77). 시간이 지나면서 사람과 환경의 상호 작용에 대한 평가가 주택의 기능을 극대화시키기 위해 필요할 수도 있다(79). 바람직한 주택이라는 문화적 개념에 부합 하고 ‘시설 스타일’의 설계를 피하는 것이 항상 민감한 부분이다(24).
기존 주거 시설에 대한 개조가 비용 효율적이다. 스웨덴의 척수장애인을 대상으로 한 연구에서는 주택에 접근성이 보장되면 최대 30%까지 요양원으로 가는 장애인의 숫자를 줄일 수 있다는 사실이 밝혀졌다(80). 그리고 같은 결과가 영국에서도 나타났다(81). 영국 전역에 걸쳐서, ‘장애인 시설 보 조금’을 자가 거주자, 집주인, 임대인에게 주택 개조 비용으로 제공하면, 개인이 다른 형태의 주거 시설로 들어가는 비용과 비교했을 때, 훨씬 경제적인 것으로 밝혀졌다(82). 캐나다에서는, 캐나다 모기지 주택 공사(Canada Mortgage and Housing Corporation)가 운영하는 장애인을 위한 거주 재활 지원 프로그램을 통해 거주지 내의 접근성 향상을 위해 집주인과 임대인에게 비용을 지원하고 있다(83).
접근 가능한 주택 장려를 위해 정보가 필요하다. 미국 콜로라도 주립 대학은 휠체어 이용자를 위한 주택 개조 시에 필요한 공간과 기타 세부 내용에 대한 정보를 건축가가 유용하게 참고할 수 있는
198 척수 손상의 국제적 관점
팸플릿과 웹사이트를 마련했다(84). 인도 정부도 WHO가 협력하여 WHO 지역 사회 중심 재활
가이드라인(CBR guideline)을(85) 바탕으로 척수손상 이후 관리와 지역 사회 통합을 위한 가이드 라인을 만들었다. 이 가이드라인을 기반으로 한 인도 지역 사회 중심 재활 프로그램은 적은 비용으로 주택을 개조할 수 있는 기본적인 정보 및 소득이 많지 않은 경우에 접근성을 개선할 수 있는 간단한 팁을 제공하고 있다.
정부, 장애인 단체, 민간 부분(영리 및 비영리)의 협력이 주택 접근성 향상에 도움이 될 수 있다. 1997년 이후로, 케냐의 국가 협동 주택 위원회(National Cooperative Housing Union)는 접근 가능한 주택 건설을 촉진하기 위해 활용 가능한 부지를 확인하고, 기술 지원과 자금 대출을 지원할 수 있도록 정부, 장애인 단체, 민간 부분의 연결 역할을 수행하고 있다(86). 2004년 인도양 지진과 쓰나미 이후, 스리랑카의 재건 과정은 다양한 분야가 협력했을 때, 소득이 낮은 사람들에게 접근 가능한 주택 보급이 어떻게 가능한지를 보여 준 하나의 사례였다(박스 7.1 참조).
박스 7.1. 스리랑카: 2004년 인도양 지진과 쓰나미 이후 회복 과정 2004년 인도양 쓰나미로 스리랑카에서는 수만 명이 목숨을 잃었고 많은 건물이 파괴되었다. 그러나 재난 이후 재건은 보다 통합적인 환경을 구축할 수 있는 기회를 제공하였다. 스리랑카의 농어촌 지역에 거주하는 장애인과 노인들은 집 주위는 말할 것도 없고 종종 집 안에서조차 이동하는 데 어려움을 겪고 있었다. 이동에 어려움이 있는 사람들은 대개 다른 사람의 도움에 의지할 수밖에 없고, 이는 정규직으로 일을 해야 하는 다른 가족 구성원의 생활에도 영향을 미치게 된다. 스리랑카에는 장애에 대한 신뢰할 만한 통계가 아직 존재하지 않지만, 수십 년에 걸친 내전으로 장애를 경험한 사람의 수는 증가하고 있다. 쓰나미 이후에, 지역의 장애인 단체는 국제적인 단체와의 협력을 통해 파괴되었던 한 마을을 시범 통합 마을로 재건하는 계획에 착수했다. 이를 위해 장애 자문을 해 줄 수 있는 건축가와 작업 치료사를 고용했다. 스리랑카에는 접근성에 대한 국가 기준이나 가이드라인이 없어서, 유럽의 접근성 가이드라인을 반영하기로 했다. 그러나 이는 유럽의 도시적, 그리고 ‘유럽식’ 시각에 너무 맞추어져서 스리랑카에 그대로 반영하는 데는 문제가 있는 것으로 나타났다. 한정된 재원 안에서, 정부가 제시한 상세 내용에 따라 간소하지만 적용 가능한 55채의 주택과 접근 가능한 지역 사회 센터가 완성되었다. 필요에 따라 접근 경사로를 설치하거나 계단에 난간을 설치하기도 하였다. 모든 주택은 지상층 에서 접근이 가능했고, 출입구에는 최소한 필요한 넓이를, 모든 방에는 휠체어의 최소 회전 반경 공간을 적용했다. 각각의 주택 측면에는 지상층 접근이 가능한 화장실과 세면실 공간을 내부에 함께 설치했다. 요청이 있는 경우, 난간과 샤워용 의자로도 사용할 수 있는 이동형 변기 시설도 제공하였다. 스위치, 난간, 수도꼭지 등은 이용자가 닿을 수 있는 범위 이내에 설치하였다. 주택 건축 이전에, 마을의 노인과 장애인, 그리고 이들의 돌봄 제공자들은 새로운 형태의 주택, 특히 화장실이 내부에 있는 구조를 별로 좋아하지 않았으나, 이후에 이런 시설들이 더 좋은 환경을 제공한다는 사실에 안심했다. 스리랑카 에서는 종종 이동에 제약이 없는 사람들이 내부에 설치된 화장실을 방으로 변경하고 화장실은 외부에 따로 만드는 경우가 있었다. 경사로와 장애인용 화장실을 갖춘 지역 사회 센터는 보통 사회 활동에 참여할 수 없었던 장애인, 이동이 불편한 사람, 돌봄 제공자들의 지역 사회 행사 참여를 가능하게 해 주었다. 이 프로젝트를 통해 다음의 중요한 교훈을 얻을 수 있었다. ∙통합 디자인은 문화적, 경제적 상황을 조심스럽게 고려해야 한다. ∙고소득 국가에서 개발한 가이드라인을 저소득 국가, 특히 농어촌 지역에 적용하는 것은 적절하지 않을 수 있다. 지역 조건에 맞는 알맞은 해결책을 찾아야 한다. ∙건설업자가 설계의 주요 내용을 잘 모를 수도 있으므로, 건축 단계에서는 면밀한 감독이 필요하다.
7. 척수손상과 할 수 있게 하는 환경 199
접근 가능한 신규 주택 건설 비용이 기존 주택 개조 비용보다 더 저렴하며, 다양한 선택지를 제공할 수 있다. 접근 가능한 주택의 공급을 늘리기 위해서는 규제와 지원 자금 통합, 접근 가능한 주택 시장 개발, 인센티브 제공, 기관 간의 업무 조율, 정보 제공, 차별 방지를 위한 공공-민간 부분의 통합적이고 협력적인 노력이 필요하다(87, 88). 또 정책을 통해 접근 가능한 신규 주택 비율을 정하는 데 도움을 줄 수 있다(10, 89). 영국에서 고령자의 요청에 따라 진행한 ‘평생 주택(Lifetime Homes)’ 사업은 최소의 추가 비용으로 이동의 편의가 요구되는 광범위한 사람들의 요구에 부합하는 거주지를 만들어 낼 수 있었다(90). ‘비지터빌러티(Visitability, 방문 가능성)’라 불리는, 주택 접근성 개선을 위한 다른 중요한 프로그램이 있다. 이 프로그램은 휠체어 이용자가 이동에 제한이 있을 수도 혹은 없을 수도 있는 친척이나 친구의 집에 접근할 수 있도록 하는 것이다. 이 프로그램은 턱이 없는 현관, 폭이 넓은 출입구, 화장실이 1층에 있는 주택과 같은 의무적인 특징을 제시하고 있다(91, 92).
주택 접근성 향상을 위해 다양한 재정 메커니즘 대책을 사용할 수 있다. 이런 대책에는 주택 건설 프로젝트를 진행 중인 민간 건축가에 대한 세제 감면, 저금리 대출 등이 포함된다. 이를 통해, 건축가 에게 1988년 미국의 공정 주택법(Fair Housing Act)과 유사한 법률에서 규정한 접근 가능한 주택 건설을 장려할 수 있다. 또한 1959년 제정된 미국의 주택법(Housing Act)을 통해 건물 건축, 보수, 구매 비용 충당을 위해 비영리 단체에 보조금을 제공하고 있다. 국영 노르웨이 주택 은행 (Norwegian Housing Bank)이 운영하는 라이프사이클 주택 프로그램(Lifecycle Housing programme)도 접근 가능한 주택 건설을 장려하기 위해 건축가에게 저금리의 대출을 제공한다. 라이프사이클 주택을 수용한 가장 큰 시장은 접근성 문제를 고급 디자인에 접목시키고, 건축가, 장애인 그룹, 건설업자의 파트너십을 고취시킴으로써 완성되었다(80, 89). 2004년 5월까지 오슬로시 에서 이 프로그램을 통해 260,873호의 주택이 공급되었으며, 이중 85%는 고령자에게 돌아갔고 나머지 15%는 비고령자 장애인에게 돌아갔다(93). 이후에 접근 가능한 주택에 관심을 가지고 건축업자와 접촉한 지역 사회 단체가 자금이 부족하다는 사실이 알려지자, 법률에 따라 인센티브를 제공하기 위해 2007년 미국에서 장애 기회 펀드(Disability Opportunity Fund )가 만들어졌다(88).
구체적으로 주택에 ‘접근 가능한(accessible)’이란 명칭을 부여하거나 디자인 상을 수여하는 방식을 통해 접근 가능한 주택 건설을 장려할 수 있다. 주택에 ‘접근 가능한’이란 명칭을 부여하면 ‘특별’ 주택에 거주한다는 편견을 해소하는 데에도 도움이 될 것이며, 소비자의 수요도 자극할 수 있을 것이다. 예를 들어, 캐나다의 브리티시컬럼비아주의 지역 사회 주도 주택 프로젝트에서는, ‘플렉스 하우징(flex housing, 구조변경이 용이한 집)’ 개념을 설계에 반영한 이후, 시버드 아일랜드(Seabird Island) 지역 사회의 휠체어 접근 가능한 주택 수요가 증가했다(94). 플렉스 하우징 설계 주택은 접근성 개선을 위해 거주민이 손쉽게 방 사이의 연결 형태와 방 크기를 변경하는 것이 가능하다.
200 척수 손상의 국제적 관점
호주와 영국에서는 접근 가능한 주택 건설을 장려하기 위해 설계자와 건축가에게 내셔널 어워드를 수여하고 지역 사회 서비스 상을 수여하기도 한다(89).
사회 주택의 접근성 개선은 경제 상황이 여의치 않은 척수장애인에게 중요하다. 양질의 사회 주택 혹은 보조 주택 제공을 위한 복잡한 펀딩 및 협력에 대한 요구 조건은 심지어 부유한 나라에서도 쉽지 않다(26, 27). 인구의 고령화가 진행됨(81)에 따라 지난 20년 동안(95-97) 유럽 각국에서는 사회 주택의 접근성 향상을 위한 많은 혁신적인 조치들이 취해졌다. • 덴마크에서는 협동조합 주택 회사가 이동에 어려움이 있는 사람들을 위해 공용 공간을 연결한 아파트 단지를 건설했다. 덴마크 정부는 건설 자금을 대고, 민간에서는 추가적인 장애인 시설 설치 비용을 제공하고, 지방 자치 단체에서는 관리 비용을 지불하고 있다. (장애인, 노인, 대가족을 위한) ‘특별한 요구의 주택 (Special-needs housing)’이 덴마크의 신규 사회 주택 건설의 50%를 차지하고 있다(98). • 스웨덴에서는 스톡홀름시 주택 계획을 통해, 민간 기업이 제공한 구 산업용 부지에 도시 설계자와 공동 작업 으로 지역 사회 센터, 어린이집, 청소년 센터, 보건소를 갖춘 접근 가능한 협동조합 주택 개발 사업을 설계 하고 완성했다(96). • 네덜란드에서는 1997년 이후 건설된 모든 신규 민영, 공공 주택에 대해 국가 건축법에 규정된 적절한 주택 기준에 따른 설계를 요구하고 있다. 이 건축법에는 문지방, 휠체어가 필요한 공간, 문의 폭, 전기 소켓 및 작업 공간의 높이와 같은 내용을 규정하고 있다.
이용자의 수요와 정부의 공급 간의 격차는 정보 제공을 통해 줄일 수 있다. 영국에서는 사회 주택 소유자의 접근성 개선을 촉구하기 위해 런던 접근 가능한 주택 등록(London Accessible Housing Register) 시스템을 마련했다(91). 이 등록 시스템은 접근 가능한 주택이 필요한 사람들을 위한 정보 창고로서의 역할을 수행했고, 모든 주택에 적용되는 세부적인 휠체어 접근성 기준에 따라 이용 가능한 사회 주택을 세분화함으로써 접근성의 기준을 마련했다(99). 접근 가능한 주택 등록제는 또한 캐나다와 호주 일부 지역에서 지방 정부와 장애인 단체에 의해 개발되었다(100). 유사한 방법이 1994년 대학살의 결과로 부상당한 민간 장애인과 퇴역 군인을 위해 접근 가능한 주택을 제공하는 광범위한 프로그램의 일부로써 르완다에서 성공적으로 개발 되었다(101). 주택 해결책 마련에서도 장애인을 소외시키지 않는 것이 중요하다. 따라서 유니버설 디자인을 적용 하고 일반 혼합 주거 지역 안에 접근 가능한 주택을 포함시키는 것이 바람직한 해결책이다.
▶ 교통 유용한 대중교통은 장애인을 위한 가장 중요한 활동 촉매제 중 하나이다(102). 교통 정책은 국가 장애 전략의 구성 요소가 되어야 하며, 한편으로 접근성은 국가 교통 계획의 한 부분이 되어야 한다. 교통에 대한 접근은 장애인이 참여한 전담 기관의 모니터링 하에 포괄적인 정책을 통해 가장 잘 논의될 수 있다. 교통 접근성 향상을 위해 가장 효과적이고 경제적인 방법은 시설의 개보수보다는
7. 척수손상과 할 수 있게 하는 환경 201
시설을 구축할 때부터 접근성을 고민하는 것이다(8). 단순히 구조적, 경제적 부분뿐만 아니라 안전과 관련된 두려움 같은 심리적인 부분도 고려해야 한다(34, 36, 62, 103). 다양한 교통수단에 걸쳐 접근성 개선을 위해 사용할 수 있는 전략(방안)을 다음에 소개한다.
노선버스, 트램, 지하철, 철도 시스템 기존 공공 교통 시스템의 개보수는 기술적, 재정적인 문제를 안고 있다(104). 예를 들어, 휠체어 공간 확보 보장, 도로와 차량 사이의 높이 차이 해결, 차량과 승강장 사이의 간격 제거 등이 이에 해당된다(105, 106). ‘저상 버스’, 자동 리프트, 엘리베이터, 경사로를 통해 접근성을 향상시킬 수 있다. 전 세계 주요 도시 지하철의 접근성은 개선되고 있으며 (107), 캐나다의 캘거리, 중국의 북경, 탄자니아의 다르에스살람 같은 도시의 급행 운송 수단 시스템은 유니버설 디자인 원칙을 반영하고 있다(104, 108-110). 이러한 노력의 목적은 직원에 의존하는 접이형 경사로, 이동형 리프트 같은 임시방편적인 요소보다는 광범위한 이동 약자의 어려움에 대처하기 위한 해결 방안을 적용하기 위함이다(111).
특별 교통수단 휠체어 이용자를 위한 완벽한 접근성이 보장된 교통수단에 대한 요구 (33, 112)는 고소득, 저소득 국가에서 운영 중인 준공공 교통(paratransit, 보조 교통수단) 서비스와 같은 수요 대응 정책으로 이어졌다(113, 114). 그러나, 이런 특별 교통수단(STS)은 소수를 위한 ‘특별 조치’로 너무 비싸고, 안전하지 못한 서비스라는 인식을 불러일으킬 수 있다 (35, 36). 이러한 인식에 대처하기 위해 , 스웨덴의 ‘브룩슬리니엔(Brukslinjen)’ 프로젝트가 2001년에 시작되었다. 이 프로젝트는 농어촌과 도시가 함께 힘을 모아 스쿨버스와 기타 정규 노선 교통수단을 포함한 기존의 공공 교통 시스템을 유연한 노선의 특별 교통수단과 완전하게 통합하는 것이다. 브룩슬리니엔 프로젝트는 국가 전역 으로 확대되었다(35, 37). 스웨덴은 주로 택시를 특별 교통수단으로 운영하고 있다(35). 보다 기술적인 해결책이 네덜란드의 레지오택시 칸(RegioTaxi KAN)과 이탈리아 볼로냐시의 플리퍼(FLIPPER) 이니셔티브 같은 방법으로 진행되었다. 두 시스템은 차량 배차 센터에서 컴퓨터 예약 및 자동 차량 위치 시스템을 이용하는 원격 제어 기반의 수요 대응 시스템을 활용하고 있다. 이 정보는 준공공 교통 시스템을 공공 시스템, 민간 택시, 기타 서비스와 통합하는 노선 최적화 소프트웨어를 통해 운영된다. 일회용 바우처를 가지고 개인이 목적지 여정을 신청하면 일련의 연동된 교통수단으로 신청 내용이 전달된다(115).
택시, 미니버스, 사이클 릭샤(자전거를 개조한 인력거) 어떤 대도시는 접근 가능한 민간 택시를 선호한다. 예를 들어, 영국 런던의 택시 가운데 75% (대략 24,000대)가 접근 가능한 택시이다(35).
202 척수 손상의 국제적 관점
소득이 많지 않은 환경에서는, 접근 가능한 택시 비용이나 네트워크 통합 관리를 위한 인프라도 감당하기 어려울 수가 있다. 이런 경우에, 장애인을 위해 릭샤(인력거), 미니버스, 삼륜 택시 같은 요금이 저렴한 교통수단을 저비용으로 개조할 수 있다(62). 상황에 따라 의자에서 몸을 옮길 수 있는 척수장애인의 경우, 이와 같은 교통수단이 좋은 대체 수단이 될 수도 있다. 남아프리카공화국의 미니 버스-택시, 모잠비크의 차파 100(chapa 100s), 멕시코의 미크로스(micros)는 사이즈가 작고 어디 서나 쉽게 이용할 수 있기 때문에 원하는 곳까지 이동이 용이한 교통수단(curb-to-curb)이다(62).
공공-민간 협력 교통 문제 해결책은 대부분 공공-민간 협력에 달려 있다. 공공 분야가 축소되거나 공영 대중교통이 낙후되었을 때, 시장 점유를 위해 경쟁하는 민간 택시, 미니버스, 다른 운송 서비스가 종종 그 빈 곳을 메우게 된다. 조지아, 가나, 카자흐스탄에서 진행된 교통에 대한 사례 연구를 보면, 일단 민간 서비스가 교통 시장에 진입하게 되면, 공공 시스템 분야를 대체하는 경향이 있고, 그 후 시장에 완전히 자리를 잡으면, 접근성 규제에 저항하거나 접근성 요구 조건을 잘 지키는 것으로 나타났다 (116). 정부와의 협력을 통해 강화된 소비자 운동은 남아프리카공화국의 케이프타운과 요하네스버그시 에서 통합 급행 운송(Integrated Rapid Transit) 시스템 안에 접근 가능한 교통수단을 성공적으로 증가시켰다(111). 마찬가지로 탄자니아의 다르에스살람 급행 운송 프로젝트(Rapid Transit Project)는 공공 운송 네트워크와 민간 보조 교통 운영자를 완전히 통합시켰다(113). 1970년대 초반, 브라질은 저상버스(high-flow bus)를 우선적으로 배치하는 데 있어 선도적인 역할을 수행했으나, 경제 위기로 인해 , 시가 공공 인프라에 재정을 대는 것이 어렵게 되었다 . 그러나 접근 가능한 서비스의 품질을 낮추는 대신에 노인과 장애인을 대표하는 단체들의 시위에 자극을 받은 브라질의 도시에서는 공공-민간 협력을 통해 접근성을 완벽하게 갖춘 급행 버스를 선택했다(117).
교육 이런 전략 중 어느 전략이라도 성공을 거두기 위해서는 지식이 있고, 사전 교육을 잘 받은 교통 관계자와의 협력이 필요하다. 버스의 안전 고정 장치는 만약 버스 기사가 이 장비의 사용법을 교육 받지 않는다면 사용할 일이 별로 없을 것이다. 택시 기사가 휠체어용 택시를 운행한다 해도, 휠체어 승차의 번거로움 때문에 휠체어 이용 승객을 피할 수도 있다. 심지어 관리자와 정책 입안자들도 접근성의 중요성과 저렴한 비용의 접근성 해결책에 대해 충분히 조사를 한 가이드라인의 필요성을 이해하지 못할 수도 있다(108).
민간 교통수단 고소득 국가의 척수장애인들에게는 민간이 운영하는 접근 가능한 차량이 생활의 자립성, 공동체 참여도, 생활 만족감을 높여 줄 수 있다(118-120). 개인의 이동에 관한 장애인 권리 협약 20조는
7. 척수손상과 할 수 있게 하는 환경 203
자립을 높이기 위한 이동 보조 기기와 장비에 대한 접근을 명시하고, 교육과 전문 인력의 필요성을 강조하고 있다. 차량으로 스스로 트랜스퍼(이동)할 수 있고 차량에 실을 수 있는 휠체어를 소유한 장애인에게는, 자동 변속기를 장착한 차량의 운전 제어 장치 개조 비용이 비교적 감당할 만한 수준일 것이다. 중국, 말레이시아, 태국, 베트남과 같은 나라의 일부 하지마비 장애인 (121)에게는 오토바이 개조가 저렴하지만 인기 있는 해결책이다. 차량으로 스스로 옮겨 앉을 수 없고, 특히 친구나 보조인이 운전을 대신 해 주어야 하는 (30) 사지 마비 장애인 (122)의 경우에, 휠체어 접근이 가능한 차량은 보다 높은 비용이 요구되는 해결책이다. 그럼에도 불구하고, 보조금과 기부금 같은 해결책을 제공하는 몇몇 나라에서는 보조 기기 기술 정책에 있어 주목할 만한 혁신이 진행 중이다(123-126). 예를 들어, 핀란드에서는 개조된 차량 구매 시 세제 감면 혜택을 받는다.
▶ 공공건물 성공적으로 접근성 향상을 이루기 위해서는 다음의 어느 요소 하나라도 간과할 수 없는데, 강력한 리더십과 결부된 구속력 있는 법과 좋은 정책, 여기에 더해 부분 간의 협력, 올바른 접근성 기준의 점진적 현실화에 대한 의지 등이 이에 속한다. 법률, 규제, 건축물 기준, 정책과 같은 제도적, 정치적 조치는 공공건물, 공적 공간을 비롯해 쇼핑 센터, 상점, 식당, 호텔과 같은 민간 시설의 접근성 향상이라는 복잡한 과제를 풀기 위해 필요하다. 게다가 정치적 의지와 제도적 지원도 이러한 요소들을 하나로 묶기 위해서 필요하다. 가장 중요한 것은, 이러한 조치들이 강제력을 갖추고 있어야 한다는 점이다. 연구에서 나타나듯이, 접근성 관련 법과 정책을 가지고 있어도, 만약 자발적 준수만을 요구한다면, 접근성 개선 노력은 최소한에 그치게 된다(19-21). 호주, 캐나다, 독일, 인도, 뉴질랜드, 영국, 미국에서와 같이 접근성 관련 규정이 구제 조항을 가진 차별 금지 법안과 직접적으로 연계된 나라에서는, 접근성 미비를 이유로 개인이 제소한 구제 신청을 통해 벌금이나 법원 명령을 이끌어 낼 수 있다. 영국의 젊은 휠체어 이용자가 2007년 접근성을 보장 하지 못한 한 주요 은행을 상대로 의미 있는 성과를 거둔 사례가 있다(127). 비록 이런 승리도 중요 하지만, 차별 금지 법안을 이용하는 경우 단점도 있다. 일단 소송을 하는 것은 상당한 비용이 필요 하며, 심지어 성공적인 결과를 거두어도, 이런 승리가 항상 제도적인 변화를 이끌 수 있는 것은 아니다. 만약 차별 금지 법안에서 정당한 편의 제공에 대한 ‘과도한 부담’이라는 변론이 인정되면, 접근성은 인권의 문제에서 경제적인 문제로 바뀌어 더욱 논의가 어렵고 불명확해지게 된다. 때때로 강제적인 집행 전략(방법)은 부분적인 기준 준수와 같은 기대에 어긋나는 결과로 이어질 수도 있다. 예를 들어, 쇼핑센터의 주 출입구에 경사로를 설치하는 것처럼 쉽고 가장 눈에 띄는 편의
204 척수 손상의 국제적 관점
제공만을 하고, 건물 내부에는 변화된 내용이 전혀 없어서 휠체어 이용자가 건물 내부에 고립되는 상황이 발생할 수도 있다(128). 모든 접근성 개선은 물론 환영하지만, 높은 비용을 초래하고, 상징 적인 편의 제공에 그친다면, 이는 배정된 예산을 낭비하는 것이고 포괄적인 접근성 향상으로 이어 지지 못한다. 접근성 문제의 해결책은 실질적이고, 상대를 비하하지 않고, 이용자 친화적이야 한다. 한 연구에서는 ‘접근 가능한 엘리베이터’로 지정된 승강기가 모두 화물용 엘리베이터 - 어떤 승강기는 쓰레기 운반용으로 사용 - 로 쓰이고 있었고, 심지어 건물에 접근 불가능한 지역에 설치되어 있었 다는 사실을 전했다(49). 비록 적용 범위가 제한적일지라도, 보다 효과적인 접근 방법은 접근성에 대한 조건을 영업 허가 취득 규정에 명시한 독일의 식당, 카페, 바 등록법(Act on Licences for
Restaurants, Cafes and Bars)의 사례이다. 강제 규정 적용의 어려움과 관련해서 유인책을 사용했던 몇몇 국가의 사례를 소개한다. • 폴란드의 ‘장애물 없는 바르샤바(Warsaw without Barriers)’ 캠페인은 가장 혁신적이고 효과적인 도시 중심부 접근성 관련 해결책을 제시한 경우 상을 수여했다. • 불가리아의 ‘접근 가능한 소피아시 지도(Map of Accessible Sofia)’ 프로젝트를 통해 접근 가능한 상점과 시설을 강조하고 광고도 진행하였다. • 공공 접근성 개선에 관한 아일랜드 국가 장애인 전략(Ireland’s National Disability Strategy)의 핵심 부분은 개발업자와 건축가들에게 확신을 심어 주는 일이었다. 이를 통해, 시장 가치 향상, 잠재적인 이용성 확대, 보다 나은 이미지 홍보, 이용 편리성과 안전 향상을 통해 그들의 투자에 대한 좋은 성과를 돌려받을 수 있도록 하는 것이다(56) (박스 7.2 참조). • 캐나다 온타리오 지방에서는, 2005년 제정된 온타리오 장애인 접근성 법(Accessibility for Ontarians with
Disabilities Act)의 규정에 대처하기 위해 지방 자치 단체 매니저 협회에서 법의 요구 조건을 준수하는 혁신 적인 방법의 예로 ‘지방 자치 단체 접근성 툴키트’ 웹 사이트를 만들었다. 이 웹사이트는 건물과 공공장소의 접근성을 높일 수 있는 실행 가능한 방법 확인에 있어 지방 자치 단체 간의 경쟁을 이끌어 냈다(129).
공공 접근성 프로그램 성공의 주요 지표는 프로그램의 포괄성과 통합성의 정도이다. 공공건물과 장소, 대중에게 개방된 민간 건물에 대한 접근성 프로그램은 관리할 수 있는 단계에서 완벽한 접근성을 구현하기 위해 노력해야 하며, 완벽한 접근성을 즉각적으로 구현할 수 없기 때문에 초기에 중요한 접근성 향상이 지체시키는 ‘완벽하지 않으면 아무것도 아닌 것(all-or-nothing)’이라는 함정에 빠지지 않도록 해야 한다. 전략의 모든 구성 요소 – 기술적 가이드라인, 전문적 지식과 전문성, 법과 정책적 체계, 대중적 인식, 정치적인 의지, 경제적 자원 – 는 전담 책임 기구의 관리 아래 하나의 접근성 프로그램으로 통합 되어야 한다. 이 전략을 통해 접근성 개선을 위한 예산을 배정하고, (건축, 도시 계획, 설계, 관련 전문 직업을 위한) 전문 교육 기관에서 접근성에 대한 교육을 실시하도록 장려해야 한다(14, 104).
7. 척수손상과 할 수 있게 하는 환경 205
박스 7.2. 접근성 유지 보수 점검 외부 점검 사항: ∙장애인 전용 주차장 완비 ∙주차 차량과 다른 장애물에 방해받지 않는 경사로와 순환로 ∙순환로와 건물에서 안전한 장소로 대피하는 탈출로는 표면에 장애물이 없고 밝은 상태 유지 ∙서비스나 수리를 받는 지역은 적절하게 보호되어야 하고, 우회 도로도 필요한 경우 마련되어야 하며 명확하게 표시를 해야 함. ∙길 표면은 깨끗하게 잘 관리하고, 자갈, 모래, 진흙, 얼음, 눈, 이끼가 없어야 함. ∙플랫폼 리프트(platform lift)의 배터리 전원은 항상 완충 상태 유지 ∙비상 탈출용 보조 기기 배치 출입구 점검 사항: ∙경사로 윗부분의 회전 공간에 장애물이 없어야 함. ∙초인종, 우편함, 문손잡이 이용 시 장애물이 없어야 함. ∙문은 쉽게 열 수 있어야 하고, 문을 닫을 경우 최소한의 힘으로 잠금장치를 이용할 수 있어야 함. ∙출입구 로비에 일시적인 혹은 영구적인 장애물이 없어야 함. 건물 내부 수평적 순환 동선 점검 사항: ∙도어 매트와 깔개는 완전히 고정해서 걸려 넘어지지 않도록 해야 함. ∙바닥에 미끄럼 방지 마감재를 처리하고, 엎지를 경우에는 즉시 치우고, 적절한 청소 세제와 광택제를 사용 ∙낡은 바닥 마감재는 교체 ∙인공조명은 적절한 조도 유지 ∙문은 쉽게 열 수 있어야 하고, 문을 닫을 경우 최소한의 힘으로 잠금장치를 이용할 수 있어야 함. ∙사용하지 않을 경우, 문은 항상 잠금 상태 유지 ∙대기실과 다른 장소의 휠체어 공간에는 장애물이 없어야 함. ∙순환로에는 장애물이 없어야 함(예: 장비 상자, 파일 박스, 자판기, 복사기 등). ∙대피 장소에는 장애물이 없어야 함. ∙건물 내의 모든 장소에서 머리와 천장 사이에는 적절한 거리를 유지하여야 하며, 바닥과 지면으로부터 220센티 미터 이내 공간에는 노출된 케이블이 없어야 함. ∙모든 승강기와 계단 이용 전후에 장애물의 방해가 없어야 함.
접근성 프로그램에 지속적인 참여를 보장하기 위해서는 장애인, 관련 전문가(재활 전문가, 정치가, 개발업자, 공학자, 건축가, 계획가 등), 기타 이해 당사자 사이에 공식적인 연결 고리도 있어야 한다. 자연재해와 같은 비극 또한 접근성 재구축을 위한 기회가 될 수 있다는 점을 참고하도록 한다. 2011년 파괴적인 지진 이후, 같은 해에 진행된 뉴질랜드의 ‘접근 가능한 크라이스트처치(Christchurch)’ 프로젝트는 장애인의 요구에 부합하고, 지진 재건 과정에서 생애 주기(lifetime) 디자인 기준 사용을 보장하기 위해 2011년 7월에 시작되었다. 2004년 인도양 지진과 쓰나미 이후에, 스리랑카의 주택은 보다 접근 가능한 형태로 재건축되었다(박스 7.1 참조). 심지어 경제적 위기에 직면한 정부도 아이티 에서 했던 것처럼 (130) 접근성 향상을 위해 상당한 진전을 이룩할 수 있다.
206 척수 손상의 국제적 관점
결론과 제안
척수장애인을 둘러싼 물리적 환경은 사회적, 경제적, 정치적, 문화적 삶의 참여와 통합을 촉진하거나 방해하는 요인이 되기도 한다. 광범위한 장애물이 존재하며, 대부분의 척수장애인은 매일의 일상생활 참여 과정에서 이러한 장애물을 적어도 몇 번은 경험한다(3, 6). 향상된 접근성은 척수장애인의 일상 생활을 상당히 개선시킨다. 접근성 향상은 또한 노인, 유모차를 끄는 부모, (영구적 혹은 잠재적으로) 이동에 제약이 있는 다른 사람들을 포함한 사회의 다른 구성원들을 위한 가치를 내재하고 있다. 즉, 접근성 향상은 모든 사람에게 도움이 된다. 효과적인 집행과 결합된 적절한 접근성 관련 정책과 법은 ‘접근성 문화’를 창조하는 데 있어 중요하다. 다음의 제안 사항은 이러한 문화를 만드는 데 도움을 줄 수 있는 조치들을 강조한 것이다.
▶ 크로스커팅(Cross-cutting) 제안 • 척수장애인이 접근할 수 있는 건물, 교통 시스템, 주택 디자인 시 개념적 접근 방법으로 유니버설 디자인을 채택하고 모든 차원에서 접근성 인식 개선을 장려한다. • 지역의 문화, 배경, 요구에 상응하는, 지역적으로 적절한 접근성 기준을 개발한다. 이후에 접근성을 주택, 환경 구축, 교통 시스템 설계와 허가의 기준에 포함시키고, 보편적 접근 기준의 충족을 보장하기 위해 접근성 법률의 준수 여부를 모니터링한다. • 정책, 제품, 서비스 디자인과 개발, 이용자 요구의 평가, 진행 과정의 모니터링을 포함한 접근성 향상 노력에 장애인 단체뿐만 아니라 기타 장애 관련 단체를 직접적으로 참여시킨다. • 자원을 이용할 수 있을 때, 기본적인 장애물 대처부터 시작해서 기준과 목표를 천천히 높이면서 접근성과 관련된 환경의 점진적인 개선을 달성한다. 병원, 정부 사무실, 학교와 같이 중요한 공공건물부터 개선 노력을 시작한다. 자원이 제한적인 상황에서는, 어떤 상황에서 어떤 성공을 거둘 수 있는지를 확인하기 위한 시범 연구를 바탕으로, 우선순위를 강조하고 일련의 지속적으로 늘어나는 목표를 제시하기 위한 전략적 계획을 수립할 필요가 있다. • 척수장애인과 다른 장애인에 대한 오해와 편견을 불식시키기 위해 인식을 개선해야 한다. 공공과 민간 서비스 분야에서 근무하는 사람들이 접근성 제공과 장애인 이용자와 고객을 존경심과 감수성을 가지고 대할 수 있 도록 반드시 교육을 실시해야 한다.
▶ 주택 • 비용 효율적이며 실현 가능성 있는 주택 개조, 보수에 관한 정보를 제공하고, 보조금과 세제 인센티브를 제공하여 비용 부담을 덜어 준다. • 접근 가능한 주택의 수를 늘리기 위해 공공-민간 인센티브를 제공한다. 척수장애인 단체, 지방 자치 단체, 주택 협동조합, 기타 이해 당사자를 참여시켜 접근 가능한 주택 설계와 건축을 위해 개발자와 함께 업무를 진행하도록 한다. • 척수장애인이 접근 가능한 주택의 위치를 쉽게 파악할 수 있도록 접근 가능한 주택 등록 시스템을 구축한다.
7. 척수손상과 할 수 있게 하는 환경 207
▶ 공공 교통 • 공공 교통 시스템의 접근성 향상을 국가의 전반적인 교통 정책의 핵심적인 부분으로 만들고, 이동의 요구 사항과 기타 접근의 요구가 있는 사람들이 참여한 책임 있는 기관의 모니터링을 진행한다. • 포장도로와 도로, 교차로, 그리고 버스, 트램, 열차, 다른 차량에 대한 접근을 포함해 트래블 체인(travel chain)의 전 부분에 걸쳐서 지속적인 접근성을 완벽하게 보장하기 위해 목표를 설정한다.
▶ 공공건물과 공간 • 대중 인식 개선과 더불어 법률적 규제, 벌금, 사전 허가 조건의 모든 조합을 통해 신규 혹은 개조된 공공건물과 공간의 확실한 접근성 기준 준수 여부를 확인한다. • 지역적으로 결정한 우선순위의 공공건물과 시설에 대해 이동 경로(circulation path)의 최대 확보를 목표로 한다. • 심사 과정을 수립하고 접근성 프로그램을 주도적으로 책임을 지고 이행할 수 있는 정부 기관을 지정한다.
▶ 참고 문헌 1. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/disabilities-convention.htm, accessed 9 May 2012). 2. Fougeyrollas P. Documenting environmental factors for preventing the handicap creation process: Quebec contributions relating to ICIDH and social participation of people with functional differences.
Disability and Rehabilitation, 1995, 17:145-153. doi: http://dx.doi.org/10.3109/09638289509166709 PMID: 7787197 3. Gray DB et al. A subjective measure of environmental facilitators and barriers for people with mobility limitations. Disability and Rehabilitation, 2008, 30:434-457. doi: http://dx.doi.org/10.1080/09638280701625377 PMID:17943511 4. Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord, 2010, 48:73-79. doi: http://dx.doi.org/10.1038/sc.2009.92 PMID:19636329 5. Noreau L, Fougeyrollas P, Boschen KA. The perceived influence of the environment on social participation among individuals with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2002, 7:56-72. doi: http://dx.doi.org/10.1310/1UGA-EY2T-N6XP-1PHE 6. Whiteneck G et al. Environmental factors and their role in participation and life satisfaction after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2004, 85:1793-1803. doi: http://dx.doi.org/10.1016/j.apmr.2004.04.024 PMID:15520974 7. Reinhardt JD, Post MWM. Measurement and evidence of environmental determinants of participation in spinal cord injury: a systematic review of the literature. Topics in Spinal Cord Injury Rehabilitation, 2010, 15:26-48. doi: http://dx.doi.org/10.1310/sci1504-26 8. WHO. World report on disability. Geneva, World Health Organization, 2011. 9. Dovey K. Home and homelessness. In: Altman I, Wener CM, eds. Home environments, human behavior, and environment: advances in theory and research. New York, NY, Plenum, 1985:33−63. 10. Heywood F. The health outcomes of housing adaptations. Disability & Society, 2004, 19:129-143. doi:
208 척수 손상의 국제적 관점
http://dx.doi.org/10.1080/0968759042000181767 11. Rauh VA, Landrigan PJ, Claudio L. Housing and health intersection of poverty and environmental exposures.
Annals
of
the
New
York
Academy
of
Sciences,
2008,
1136:276-288.
doi:
http://dx.doi.org/10.1196/annals.1425.032 PMID:18579887 12. Mann WC et al. Environmental problems in the homes of elders with disabilities. The Occupational Therapy Journal of Research, 1994, 14:191-211. 13. Stark S. Creating disability in the home: the role of environmental barriers in the United States.
Disability & Society, 2001, 16:37-49. doi: http://dx.doi.org/10.1080/713662037 14. Steinfeld E, Shea SM. Enabling home environments: identifying barriers to independence. Technology and Disability, 1993, 2:69-79. 15. Toran K. Accessible housing database and manual. Berkeley, CA, World Institute on Disability, 2000 (http://www.wid.org/publications/accessible-housing-database-and-manual, accessed 28 March 2012). 16. Forrest G, Gombas G. Wheelchair-accessible housing: its role in cost containment in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 1995, 76:450-452. doi: http://dx.doi.org/ 10.1016/S0003-9993(95)80576-1 PMID:7741616 17. Moore W. NHS and local government try to stop introduction of “bed blocking” fines. British Medical
Journal, 2003, 326:184. doi: http://dx.doi.org/10.1136/bmj.326.7382.184/g PMID:12549436 18. Eide AH, Benedicte I. Living conditions among people with disabilities in developing countries. In: Eide AH et al., eds. Disability and poverty: a global challenge. University of Bristol, The Policy Press, 2011, 55−70. 19. IDRM. Regional report of the Americas. Chicago, IL, International Disability Rights Monitor, 2004 (http://idrmnet.org/pdfs/IDRM_Americas_2004.pdf, accessed 27 March 2012). 20. IDRM. Regional report of Asia. Chicago, IL, International Disability Rights Monitor, 2005 (http://idrmnet.org/pdfs/CIR_IDRM_Asia_05.pdf, accessed 27 March 2012). 21. IDRM. Regional report of Europe. Chicago, IL, International Disability Rights Monitor, 2007 (http://idrmnet.org/pdfs/IDRM_Europe_2007.pdf, accessed 20 April 2012). 22. Beresford R, Rhodes D. Housing and disabled children. York, Joseph Rowntree Foundation, 2008. 23. Imrie R. The role of the building regulations in achieving housing quality. Environment and Planning.
B, Planning & Design, 2004, 31:419-437. doi: http://dx.doi.org/10.1068/b3056 24. Milner J, Madigan R. Regulation and innovation: rethinking inclusive housing design. Housing
Studies, 2004, 19:727-744. doi: http://dx.doi.org/10.1080/0267303042000249170 25. Habinteg. Mind the step. London, Habinteg Housing Association, 2010. 26. Jacobs K et al. What future for public housing? A critical analysis. Hobart, Australian Housing and Urban Research Institute Southern Research Centre, 2010. 27. Hills J. Ends and means: the future roles of social housing in England. London, ESRC Research Centre for Analysis of Social Exclusion/ London School of Economics and Political Science, 2007
7. 척수손상과 할 수 있게 하는 환경 209
(CASE report 34). 28. Scanlon K, Whitehead C, eds. Social housing in Europe II: a review of policies and outcomes. London, London School of Economics, 2008. 29. Wehman P et al. Removing transportation barriers for persons with spinal cord injuries: an ongoing challenge to community reintegration. Journal of Vocational Rehabilitation, 1999, 13:21-30. 30. Scheer J et al. Access barriers for persons with disabilities: the consumer’s perspective. Journal
of Disability Policy Studies, 2003, 13:221-230. doi: http://dx.doi.org/10.1177/104420730301300404 31. Wee J, Paterson M. Exploring how factors impact the activities and participation of persons with disability: constructing a model through grounded theory. Qualitative Report, 2009, 14:165-200. 32. United Spinal Association. Accessible air travel: a guide for people with disabilities. East Elmhurst, NY, United Spinal Association, 2012. (http://www.unitedspinal.org/disability-publications-resources/ disability-publications/, accessed 26 March 2012). 33. Iwarsson S, Jensen G, Stahl A. Travel chain enabler: development of a pilot instrument for assessment of urban public bus transport accessibility. Technology and Disability, 2000, 12:3-12. 34. Roberts P, Babinard J. Transport strategy to improve accessibility in developing countries. Washington, DC, World Bank, 2005. 35. IRTU. Economic aspects of taxi accessibility. Paris/Geneva, European Conference of Ministers of Transport/International Road Transport Union, 2001. 36. Stahl A. The provision of transportation for the elderly and handicapped in Sweden. Lund, Institutionen for Trafikteknik/Lunds Tekniska Hogskola, 1995. 37. Wretstrand A et al. Injuries in special transport services – situations and risk levels involving wheelchair users. Medical Engineering & Physics, 2009, 32:248-253. doi: http://dx.doi.org/10.1016/ j.medengphy.2009.07.022 PMID:19720552 38. Sapey B, Stewart J, Donaldson G. Increases in wheelchair use and perceptions of disablement. Disability & Society, 2005, 20:489-505. doi: http://dx.doi.org/10.1080/09687590500156162 39. Barf HA et al. Restrictions in social participation of young adults with spina bifida. Disability and Rehabilitation, 2009, 31:921-927. doi: http://dx.doi.org/10.1080/09638280802358282 PMID:19116807 40. Ahn HC et al. Architectural barriers to persons with disabilities in business in an urban community. The Journal of Burn Care & Rehabilitation, 1994, 15:175-179. doi: http://dx.doi.org/10.1097/00004630199403000-00014 41. United States Access Board. Uniform Federal Accessibility Standards (UFAS). Washington, DC, United States Access Board, 2007 (http://www.access-board.gov/ufas/ufas-html/ufas.htm, accessed 27 March 2012). 42. Schneider M, Couper J, Swartz L. Assessment of accessibility of health facilities to persons with disabilities. Matieland, Stellenbosch University, 2010. 43. Allotey P et al. The DALY, context and the determinants of the severity of disease: an exploratory comparison of paraplegia in Australia and Cameroon. Social Science & Medicine, 2003, 57:949-958. doi: http://dx.doi.org/10.1016/S0277-9536(02)00463-X PMID:12850119
210 척수 손상의 국제적 관점
44. Rimmer JH et al. Accessibility of health clubs for people with mobility disabilities and visual impairments. American Journal of Public Health, 2005, 95:2022-2028. doi: http://dx.doi.org/10.2105/ AJPH.2004.051870 PMID:16254234 45. Williams R et al. Outdoor recreation participation of people with mobility disabilities. Selected results of the National Survey of Recreation and the Environment. Journal of Park and Recreation
Administration, 2004, 22:85-101. 46. Xiang H et al. Risk of vehicle–pedestrian and vehicle–bicyclist collisions among children with disabilities. Accident; Analysis and Prevention, 2006, 38:1064-1070. doi: http://dx.doi.org/10.1016/ j.aap.2006.04.010 PMID:16797463 47. Tight MR, Carsten OMJ, Sherborne D. Problems for vulnerable road users in Great Britain. Working Paper 292. Leeds, Institute for Transport Studies, University of Leeds, 1989. 48. Williams K, Savill T, Wheeler A. Review of the road safety of disabled children and adults. TRL Report TRL559. Wokingham, Transport Research Laboratory, 2002. 49. Martin LM. Wheelchair accessibility of public buildings in Utica, New York. The American Journal of Occupational Therapy., 1987, 41:217-221. doi: http://dx.doi.org/10.5014/ajot.41.4.217 PMID:3688133 50. Rivano-Fischer D. Wheelchair accessibility of public buildings in Al Ain, United Arab Emirates (UAE). Disability and Rehabilitation, 2004, 26:1150-1157. doi: http://dx.doi.org/10.1080/096382804100017214843 PMID:15371028 51. Scelza WM et al. Perceived barriers to exercise in people with spinal cord injury. American Journal
of Physical Medicine & Rehabilitation, 2005, 84:576-583. doi: http://dx.doi.org/10.1097/01.phm. 0000171172.96290.67 PMID:16034226 52. Welage N, Liu KPY. Wheelchair accessibility of public buildings: a review of the literature. Disability
and Rehabilitation. Assistive Technology, 2011, 6:1-9. doi: http://dx.doi.org/10.3109/17483107.2010. 522680 PMID:20958181 53. Hamzat TK, Dada OO. Wheelchair accessibility of public buildings in Ibadan, Nigeria. Asia Pacific Disability Rehabilitation Journal, 2005, 16:115-124. 54. Waenlor W et al. Facilities for the disabled in the commercial districts of Bangkok − are they adequate? The Southeast Asian Journal of Tropical Medicine and Public Health, 2002, 33 Suppl. 3:164-165. PMID:12971501 55. UNESCAP. Disability at a glance 2009: a profile of 36 countries and areas in Asia and the Pacific. Bangkok, United Nations Economic and Social Commission for Asia and the Pacific, 2009. 56. NDA. Building for everyone: inclusion, access and use. Dublin, National Disability Authority, 2002 (http://www.nda.ie/cntmgmtnew. nsf/0/EBD4FB92816E8BB480256C830060F761/$File/Building_for_ Everyone.pdf, accessed 28 March 2012). 57. UNAPD. Uganda National Action on Physical Disability. Accessibility standards. A practical guide to
create a barrier-free physical environment in Uganda. Kampala, National Action on Physical Disability/Ministry of Gender, Labour and Social Development, 2010 (http://www.danskhandicapforbund.dk/ index.php/download_file/-/view/835/, accessed April 11, 2012).
7. 척수손상과 할 수 있게 하는 환경 211
58. USA. National Commission on Architectural Barriers. Design for all Americans. A report of the National Commission on Architectural Barriers to Rehabilitation of the Handicapped. Washington, DC, US Government Printing Office, 1967 (http://www.eric.ed.gov/PDFS/ED026786.pdf, accessed 28 March 2012). 59. Newman SD. Evidence-based advocacy using Photovoice to identify barriers and facilitators to community participation after spinal cord injury. Rehabilitation Nursing, 2010, 35:47-59. doi: http://dx.doi.org/10.1002/j.2048-7940.2010. tb00031.x PMID:20306612 60. World Bank. People with disabilities in India: from commitments to outcomes. Washington, DC, World Bank, 2009 (http://siteresources.worldbank.org/INDIAEXTN/Resources/295583-1171456325808/ DISABILITYREPORTFINALNOV2007.pdf?bcsi_scan_C7A381BA8BD8A412=0&bcsi_scan_filename=DISA BILITYREPORTFINALNOV2007.pdf accessed 28 April 2012). 61. Council of Canadians with Disabilities. Celebrating our accomplishments. Winnipeg, Council of Canadians with Disabilities, 2011. (http://www.ccdonline.ca/media/socialpolicy/booklet2011/celebrating-ouraccomplishments.pdf?bcsi_scan_C7A381BA8BD8A412=0&bcsi_scan_filename=celebrating-our-accom plishments.pdf, accessed 28 March 2012). 62. Venter C et al. Enhanced accessibility for people with disabilities living in urban areas. Ithaca, NY, Cornell University, 2002. (http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi?article=1258&context= gladnetcollect&seiredir=1&referer=http%3A%2F%2Fwww.google.ch%2Furl%3Fsa%3Dt%26rct%3Dj%2 6q%3Dpr%252Fint%252F248%252F02%26source%3Dweb%26cd%3D1%26sqi%3D2%26ved%3D0CCMQ FjAA%26url%3Dhttp%253A%252F%252Fdigitalcommons.ilr.cornell.edu%252Fcgi%252Fviewcontent.cgi %253Farticle%253D1258%2526context%253Dgladnetcollect%26ei%3DXeOHT6LtGI-xhAeY49DSCQ%26u sg%3DAFQjCNH_Z84ektdtheC2GJkOEpCIOWz__g%26sig2%3DJm3pxr0kB7v7fNPOxCNYFg&bcsi_scan_ 97961A1EAF8C426F=8OF3I6CqR1a6YeGeQbpDFIMfwCxTAAAANYbiDQ==&bcsi_scan_filename=viewcont ent.cgi, accessed 13 April 2012). 63. Kunieda M, Roberts P. Inclusive access and mobility in developing countries. Washington, DC, World Bank, 2007 (http://siteresources.worldbank.org/INTTSR/Resources/07-0297.pdf, accessed 28 March 2012). 64. Clarke-Scott MA, Nowlan S, Gutman G. Progressive housing design and home technologies in Canada. In: Preiser WFE, Ostroff E, eds. Universal design handbook. New York, NY, McGraw Hill, 2001, 36.1–36.20. 65. Raheja G. Enabling environments for the mobility impaired in the rural areas. Roorkee, Indian Institute of Technology, 2008. 66. Imrie R, Kumar M. Focusing on disability and access in the built environment. Disability & Society, 1998, 13:357-374. doi: http://dx.doi.org/10.1080/09687599826687 67. Noreau L, Boschen K. Intersection of participation and environmental factors: a complex interactive process. Archives of Physical Medicine and Rehabilitation, 2010, 91 Suppl:S44-S53. doi: http://dx.doi.org/ 10.1016/j.apmr.2009.10.037 PMID:20801279 68. Reinhardt JD et al. Measuring impact of environmental factors on human functioning and disability: a review of various scientific approaches. Disability and Rehabilitation, 2011, 33:2151−2165 (E-pub 7 May 2011).
212 척수 손상의 국제적 관점
69. Whiteneck G, Dijkers MP. Difficult to measure constructs: conceptual and methodological issues concerning participation and environmental factors. Archives of Physical Medicine and Rehabilitation, 2009, 90 Suppl:S22-S35. doi: http://dx.doi.org/10.1016/j.apmr.2009.06.009 PMID:19892071 70. Fange A, Iwarsson S. Physical housing environment: Development of a self-assessment instrument. Canadian Journal of Occupational Therapy, 1999, 66:250-260. PMID:10641377 71. Fange A, Iwarsson S. Accessibility and usability in housing: construct validity and implications for research and practice. Disability and Rehabilitation, 2003, 25:1316-1325. PMID:14617438 72. Green RJ. An introductory theoretical and methodological framework for a universal mobility index (UMI) to quantify, compare, and longitudinally track equity of access across the built environment.
Journal of Disability Policy Studies, 2011, 21:219-229. doi: http://dx.doi.org/10.1177/1044207310384998 73. Stark S et al. Development of a measure of receptivity of the physical environment. Disability and
Rehabilitation, 2007, 29:123-137. doi: http://dx.doi.org/10.1080/09638280600731631 PMID:17364763 74. Stark SL et al. The interrater reliability of the community health environment checklist. Archives of
Physical Medicine and Rehabilitation, 2008, 89:2218-2219. doi: http://dx.doi.org/10.1016/j.apmr.2008.04. 020 PMID:18996253 75. Heywood F. Money well spent: the effectiveness and value of housing adaptations, Bristol, The Policy Press, 2001. 76. Olsen RV, Ehrenkrantz E, Hutchings B. Creating supporting environments for people with dementia and their caregivers through home modifications. Technology and Disability, 1993, 2:47-57. 77. Stark S. Home modifications that enable occupational performance. In: Letts L, Rigby P, Stewart D, eds. Using environments to enable occupational performance. Thorofare, NJ, Slack, 2003. 78. Tually S, Beer A, Mcloughlin P. Housing assistance, social inclusion and people living with a disability. AHURI Final Report 178. Melbourne, Australian Housing and Urban Research Institute Southern Research Centre, 2011. 79. Fange A, Iwarsson S. Changes in accessibility and usability in housing: an exploration of the housing adaptation process. Occupational Therapy International, 2005, 12:44-59. doi: http://dx.doi.org/10.1002/oti.14 PMID:15962699 80. Ratzka A. A brief survey of studies on costs and benefits of non-handicapping environments. Presentation at the International Congress on Accessibility in Rio de Janeiro, Brazil, June 1994. Stockholm, Independent Living Institute, 1994 (http://www.independentliving.org/cib/cibrio94access.html, accessed 28 March 2012). 81. Lansley P et al. Adapting the homes of older people: a case study of costs and savings. Building
Research and Information: the international journal of research, development and demonstration, 2004, 32:468–483. doi:10.1080/0961321042000269429 doi: http://dx.doi.org/10.1080/0961321042000269429 82. Jones C. Review of housing adaptations including disabled facilities grants – Wales. Cardiff, Welsh Assembly Government, 2005 (http://new.wales.gov.uk/dsjlg/research/houseadaptreview/reviewe.pdf?lang=en, accessed 27 March 2012). 83. CMHC/SCHL. Homeowner residential rehabilitation assistance program. Homeowner RRAP. Ottawa,
7. 척수손상과 할 수 있게 하는 환경 213
Canadian Mortgage and Housing Corporation (http://www.cmhc-schl.gc.ca/en/co/prfinas/prfinas_001.cfm, accessed 28 March 2012). 84. Tremblay KR, Birdsong C. Home adaptations for disabled persons. Fact sheet No. 9.529. Fort Collins, CO, Colorado State University, 2011 (http://www.ext.colostate.edu/pubs/consumer/09529.pdf, accessed 11 April 2012). 85. WHO. Community-based rehabilitation: CBR guidelines. Geneva, World Health Organization, 2010. 86. Cities Alliance. The enabling environment for housing finance in Kenya. Civis: Shelter Finance for the Poor Series, 2003, issue 4. Washington, DC, Cities Alliance, 2003 (http://www.citiesalliance.org/ ca/sites/citiesalliance.org/files/Kenya+CIVIS+April03(1).pdf, accessed 27 March 2012). 87. Parker S, Fisher KR. Facilitators and barriers in Australian disability housing support policies: using a human rights framework. Disability Studies Quarterly, 2010, 30:3-4. 88. Hammerman CD, Bennett S. The disability housing market: opportunity for community development finance as the Americans with Disabilities Act turns 20. Community Development Investment Review, 2009, 5:88−96 (http://www.frbsf.org/publications/community/review/vol5_issue3/hammerman_bennett.pdf, accessed 27 March 2012). 89. Scotts M, Saville-Smith K, James B. International trends in accessible housing for people with
disabilities: a selected review of policies and programmes in Europe, North America, United Kingdom, Japan and Australia. Wellington, Centre for Research, Evaluation and Social Assessment, 2007 (http://www.chranz.co.nz/pdfs/working-paper-2.pdf, accessed 11 April 2012). 90. Brewerton J, Darton D, eds. Designing lifetime homes. York, Joseph Rowntree Foundation, 1997. 91. Mayor of London. London Accessible Housing Register: a good practice guide for social housing landlords. London, Mayor of London, 2011 (http://www.london.gov.uk/sites/default/files/LAHR%20Good% 20practice%20guide%202011.pdf, accessed 28 March 2012). 92. Truesdale S, Steinfeld E. Visit-ability: an approach to universal design in housing. Buffalo, NY, Center for Inclusive Design and Environmental Access, 2002. 93. Schwartz AF. Housing policy in the United States: an introduction. New York, NY, Routledge, 2006. 94. Doble A, Sieniuc R. Integration and innovation: the Seabird Island project. ArchitectureBC. Journal of the Architectural Institute of British Columbia, 2003, Issue 10, 13–20. 95. European Commission. 2010: A Europe accessible for all. ETCAATS, e-learning for accessible tourism, 2003 (http://www.etcaats.eu/?i=etcaats.en.etcaatslibrary.852, accessed 6 March 2012). 96. CECODHAS. Housing organisations creating social capital. Exchange (published by CECODHAS Housing Europe – The European Federation of Public, Cooperative & Social Housing, Brussels), Spring 2009 (http://www.housingeurope.eu/www.housingeurope.eu/uploads/file_/exch%20spring_09en.pdf accessed 11 April 2012). 97. Randall B. Breaking down the barriers: social housing for people with disabilities in Europe. Brussels, European Liaison Committee for Social Housing, 2010. 98. Whitehead C, Scanlon K. Social housing in Europe. London, London School of Economics, 2007 (http://vbn.aau.dk/ files/13671493/SocialHousingInEurope.pdf, accessed 4 January 2012).
214 척수 손상의 국제적 관점
99. SELHP. Wheelchair homes design guidelines. Guidelines to achieve the necessary standards for wheelchair users’ dwellings. London, South East London Housing Partnership, 2008 (http://www.selondonhousing.org/Documents/080530%20WC%20guide%20May%2008.pdf, accessed 28 March 2012). 100. South Australia. Housing options for people with a disability. Adelaide, Government of South Australia (http://www.sa.gov.au/subject/Community+Support/Disability/Adults+with+disability/Housing+ and+home+assistance/Housing+options+for+people+with+a+disability, accessed 28 March 2012). 101. Rwanda. Rwanda demobilization program builds homes for disabled ex-combatants (News release). Kigali, World Bank, 2009 (http://web.worldbank.org/WBSITE/EXTERNAL/COUNTRIES/AFRICAEXT/0, contentMDK:22275330~pagePK:146736~piPK:226340~theSitePK:258644,00.html, accessed 28 March 2012). 102. Leonardi M et al. Integrating research into policy planning: MHADIE policy recommendations.
Disability and Rehabilitation, 2010, 32 Suppl 1:S139-S147. doi: http://dx.doi.org/10.3109/09638288. 2010.520807 PMID:20874663 103. Wretstrand A et al. Older people and local public transit: mobility effects of accessibility improvements in Sweden. Journal of Transport and Land Use, 2010, 2:49-65. 104. Steinfeld E. Universal design in mass transportation. In: Preiser WFE, Ostroff E, eds. Universal design handbook. New York, NY, McGraw Hill, 2001:24.1–24.25. 105. Daamen W, De Boer E, De Kloe R. Assessing the gap between transport vehicles and platforms as a barrier for the disabled: use of laboratory experiments. Transportation Research Record, 2008, 2072:131-138. doi: http://dx.doi.org/10.3141/2072-14 106. Dejeammes M. Overview of technological developments for accessible transport systems and mobility in Europe. Paper delivered at the 12th International Conference on Mobility and Transport for Elderly and Disabled Persons (TRANSED), Hong Kong, 2−4 June 2010 (http://www.sortclearinghouse.info/ cgi/viewcontent.cgi?article=1647&context=research accessed 28 March 2012). 107. Sage Traveling web site. Disabled travel to Europe. (http://www.sagetraveling.com accessed 2013). 108. Rickert T. Bus rapid transit accessibility guidelines. Washington, DC, World Bank, 2007 (http://siteresources.worldbank.org/DISABILITY/Resources/280658-1172672474385/BusRapidEngRic kert.pdf, accessed 20 April 2012). 109. Wright L. Planning guide: bus rapid transit. Eschborn, Deutsche Gesellschaft fur Technische Zusammenarbeit, 2004 (http://ecoplan.org/library/clinton/brt-planning%20guide-gtz.pdf, accessed 28 March 2012). 110. Imrie R. Disability and the city: international perspectives. London, Paul Chapman Publishing, 1996. 111. Walters J. Overview of public transport policy developments in South Africa. Research in Transportation Economics, 2008, 22:98-108. doi: http://dx.doi.org/10.1016/j.retrec.2008.05.023 112. Maynard A. Can measuring the benefits of accessible transport enable a seamless journey? Journal of Transport and Land Use, 2009, 2:21-30. 113. Schalekamp H et al. An international review of paratransit regulation and integration experiences.
7. 척수손상과 할 수 있게 하는 환경 215
Lessons for public transport system rationalisation and improvement in African cities. Rondebosch, African Centre of Excellence for Studies in Public and Non-motorised Transport (ACET), 2010 (http://www.fut.se/download/18.1166db0f120540fe049800010991/Mfinanga++international+review.pdf, accessed 28 March 2012). 114. Stahl A. Adaptation of the whole travel chain – benefits and attitudes. Paper presented at the 23rd PTRC European Transport Forum, Coventry, United Kingdom, 1996. 115. International ITS. FLIPPER: improving the provision of flexible transport services. 2009 (http://www. itsinternational.com/sections/transmart/features/flipper-improving-the-provision-of-flexible-transportservices/?locale=en, accessed 11 April 2012). 116. Finn B. Market role and regulation of extensive urban minibus services as large bus service capacity is restored: case studies from Ghana, Georgia and Kazakhstan. Research in Transportation Economics, 2008, 22:118-125. doi: http://dx.doi.org/10.1016/j.retrec.2008.05.012 117. Lindau LA et al. Alternative financing for bus rapid transit (BRT): the case of Porto Alegre, Brazil. Research in Transportation Economics, 2008, 22:54-60. doi: http://dx.doi.org/10.1016/j.retrec. 2008.05.018 118. Peters B. Driving performance and workload assessment of drivers with tetraplegia: an adaptation evaluation framework. Journal of Rehabilitation Research and Development, 2001, 38:215-224. PMID:11392654 119. Biering-Sørensen F, Hansen RB, Biering-Sørensen J. Mobility aids and transport possibilities 10− 45 years after spinal cord injury. Spinal Cord, 2004, 42:699-706. doi: http://dx.doi.org/10.1038/ sj.sc.3101649 PMID:15289807 120. Chan SC, Chan AP. User satisfaction, community participation and quality of life among Chinese wheelchair users with spinal cord injury: a preliminary study. Occupational Therapy International, 2007, 14:123-143. doi: http://dx.doi.org/10.1002/oti.228 PMID:17624872 121. Kohrman M. Motorcycles for the disabled: mobility, modernity and the transformation of experience in urban China. Culture, Medicine and Psychiatry, 1999, 23:133-155. doi: http://dx.doi.org/10.1023/ A:1005455815637 PMID:10388946 122. Kiyono Y et al. Car-driving ability of people with tetraplegia. Archives of Physical Medicine and Rehabilitation, 2001, 82:1389-1392. doi: http://dx.doi.org/10.1053/apmr.2001.26089 PMID:11588742 123. Wallace JF. A policy analysis of the assistive technology alternative financing program in the United States. Journal of Disability Policy Studies, 2003, 14:74-81. doi: http://dx.doi.org/10.1177/10442073030140020301 124. Dalto M. Maryland’s assistive technology loan program: successful outreach and partnerships. Journal of Disability Policy Studies, 2003, 14:91-94. doi: http://dx.doi.org/10.1177/10442073030140020601 125. Motability Operations. Your guide to getting a Motability car: Car Info Guide April 2011. London, Motability Operations, 2011 (http://www.motabilitycarscheme.co.uk/documents/PDFs/Car%20Scheme/ Your%20guide%20to%20getting%20a%20 Motability%20car.pdf, accessed 28 March 2012). 126. Hammond M. The Utah Assistive Technology Foundation: program features and initiatives. Journal of Disability Policy Studies, 2003, 14:95-97. doi: http://dx.doi.org/10.1177/10442073030140020701
216 척수 손상의 국제적 관점
127. Royal Bank of Scotland Group Plc v Allen, 2009, EWCA Civ 1213. England and Wales Court of Appeal (Civil Division) Decisions (http://www.bailii.org/ew/cases/EWCA/Civ/2009/1213.html, accessed 20 April 2012). 128. McClain L. Shopping center wheelchair accessibility: ongoing advocacy to implement the Americans with Disabilities Act of 1990. Public Health Nursing (Boston, Mass.), 2000, 17:178-186. doi: http://dx.doi.org/10.1046/j.1525-1446.2000.00178.x PMID:10840287 129. AMCTO. Ontario municipal accessibility toolkit. Mississauga, Association of Municipal Managers, Clerks and Treasurers of Ontario, 2010 (http://www.accessiblemunicipalities.ca/home.asp, accessed 27 March 2012). 130. Iezzoni LI, Ronan LJ. Disability legacy of the Haitian earthquake. Annals of Internal Medicine, 2010, 152:812-814. PMID:20231547
7. 척수손상과 할 수 있게 하는 환경 217
Education and employment
8. 교육과 고용
“내 능력을 알고 있던 학교 선생님, 친구, 가족들은 적극적으로 나를 지원해 주었다. 그러나 다른 학교 아이들은 내가 휠체어를 탄다는 이유만으로 나를 놀려댔다. 여하튼 그 아이들도 내가 꽤 재치 있게 대응했을 때 놀려대는 것을 그만두었다. 정말로 변했으면 하는 것은, 사람들이 장애인을 대하는 태도이다. 우리에게 안타까움을 표시하거나 우리를 바보라고 생각하는 대신에 그냥 비장애인처럼 대해 주었으면 한다.” (키린가와, 뉴질랜드)
“강사와 행정 직원들은 휠체어 접근이 가능한 장소에서 강의를 진행해야 하는 필요성에 대해서 종종 이해하지 못한다. 그들은 왜 대략 300명의 학생들이 1명의 장애 학생 때문에 불편을 감수해야 하는지 의문을 제기한다. 게다가, 나의 비장애 동급생들도 정당한 편의 제공을 불공정한 특혜로서 인식하는 경향이 있다. (현재는) 대학에서 장애 담당 직원(Disability Officer)을 채용했다. 결과적으로, 행정 직원, 강사, 학생 모두가 남아프리카공화국의 법률에 따라서 장애 학생에 대한 정당한 편의 제공을 계속 감수해야 한다.” (리젤레, 남아프리카공화국)
“내가 아팠을 때, 가정에 음식을 배달하는 일을 하고 있었다. 휠체어 때문에 내 일을 잃어버릴 수도 있다고 생각했 다. 가게 주인은 항상 내가 해고되는 일은 없을 거라고 말했었다. 다시 직장으로 돌아왔을 때, 나는 가게의 총괄 책임자가 되었다. 제품을 관리하고, 제품 생산자를 응대하고, 종업원과 가게 수입을 관리했다. 일을 통해서 나는 행복을 느꼈고, 다른 사람들과 관계를 맺을 수 있었고, 집을 떠나서, 미래를 가질 수 있게 되었다. 일은 손상으로 인한 근심을 떨쳐버리는 데 정말로 많은 도움을 주었다.” (호세, 아르헨티나)
“6년 전 30세 나이에 발병한 척추 결핵으로 나는 하지마비가 되었다. 발병 첫해에는 낙심하고 몹시 우울했다. 침대에 누워 있는 것을 제외하고는 어떤 일도 하고 싶지 않았다. 어느 날, 어머니께 이끌려 강제로 이웃을 방문하게 되었다. 침대에 누워서 사지를 전혀 움직일 수 없지만 여전히 미소를 짓고 있는 이웃을 보았을 때, 나는 나 자신을 되돌아보게 되었고, 여전히 무언가를 할 수 있는 온전한 두 팔과 두 손이 있다는 사실을 깨닫게 되었다. 이후에 나는 자기 관리를 스스로 하기 시작했고 장애인을 위한 직업 프로그램에도 참여했다. 지금은 집에서 작은 전파상을 운영하며 한 달에 3,000밧을 벌고 있다. 이 돈이면 충분히 생활이 가능하다.” (본펭, 태국)
“장애를 받아들이고 스포츠를 통해 나 자신을 증명한 순간, 삶의 새로운 문이 열렸다. 일을 하고자 하는 욕구가 중요했 다. 나는 고용 서비스를 통해 상당한 지원을 받았으며, 이 서비스 덕택에 국영 기업의 일자리를 찾을 수 있었다. 곧이어 나는 더 성취하기를 원했고, 다른 직업을 찾기 시작했다. 민간 기업에서 일자리를 찾을 수 있었고, 그곳에서 많은 경험을 쌓았다. 운이 좋게도, 나는 장애가 아니라 능력으로 사람을 판단하는 회사에 입사할 수 있었다. 그리고 몇 년이 지나서 관리 책임자로 승진하게 되었다.” (자네즈, 슬로베니아)
8 교육과 고용 교육은 단순히 배움의 과정이 아닌, 사회의 활발한 구성원이 되기 위한 것이다. 고용은 단순히 수입을 얻고자 하는 것이 아닌 소속을 의미한다. 척수장애인은 비장애인과 동등하게 교육과 고용에 참여할 권리가 있다. 유엔 장애인 권리 협약 24조는(1) 정부가 ‘모든 차원에서 통합 교육 시스템’에 대한 동등한 접근을 보장하고, 교육의 촉진을 위해 정당한 편의와 개인별 지원 서비스를 제공해야 할 필요성을 강조하고 있다. 동 협약 27조는 모든 형태의 고용 차별을 금지하고, 직업 훈련과 자가 고용 기회에 대한 접근을 장려하고, 작업장의 정당한 편의 제공을 요청하고 있다. 교육은 다음의 사람들을 위한 고용과 사회 참여를 위한 과정이다. • 이분척추증을 가지고 태어나 초등 교육부터 대학교 교육, 그 이상의 모든 교육 단계에 걸쳐 참여를 해야 하는 아동 • 중도 척수손상 이후에 학교나 대학교를 마치고자 하는 젊은 청년 • 대안적(새로운) 경력을 찾기 위해 재교육을 받거나 기술을 향상시키기를 원하는 중도 성인 척수장애인
일반 교육 시스템으로의 통합은 어느 정도 환경적인 변경이 필요할 수도 있다. 또한 젊은 사람의 경우 학교로 돌아가거나 높은 단계의 고등 교육을 받는 과정을 가로막을 수도 있는 낮은 자존감과 자의식을 극복하기 위해 상담과 기타 사전 준비가 필요할 수 있다. 의미 있는 직업을 찾고 유지하며, 손상 이전의 직장으로 돌아가는 것 또한 척수장애인에게는 큰 도전 이다. 그러나 직업 재활과 상담 및 사전 준비를 통해, 적절한 보조 기기 기술의 제공을 통해, 고용주 측에서 작업장 개선과 편의 제공을 통해 척수장애인도 대부분의 업무를 수행할 수 있다. 일은 단순히 경제적 안정의 근원으로서 중요한 것만이 아닌, 의미 있는 삶의 기반과 사회적 만남의 기회를 제공하고 목적의식과 자존감을 불어넣어 줄 수 있다. 척수장애인의 교육과 고용에서의 완전한 참여는 장애인의 상태에 대한 잘못된 인식을 떨쳐내는 데 달려 있다. 교사, 학교 행정 직원, 동급생들이 척수손상에 대해 교육을 받을 때, 이런 지식은 척수장애 아동과 청년의 다음 단계로의 변화와 학교로 돌아가는 것을 촉진할 수 있다. 고용과 관련된 상황에서, 척수장애인 근로자가 일을 할 수 없다는 가정은 충분한 자격이 있는 장애인의 취업을 막게 될 것이고, 설사 취업을 했더라도 동료 직원들의 존중을 받는 것이 어려울 수도 있다. 종종 척수손상과 관련된 오해에 대처하는 최선의 방법은 척수장애인을 동급생, 동료 직원으로 경험하며, 옆 에서 배우거나 함께 일을 하는 것이다.
8. 교육과 고용 221
척수손상과 교육의 참여
장애 아동은 일반적으로 취학률이 낮으며, 흔히 학교에 계속 남아 있거나 상급 학년으로 올라가는 비율이 낮은 편이다(2). 저소득 국가에서는, 모든 차원에서 장애인의 교육 접근이 제한적이며 (3), 청년 장애인의 고등 교육에 대한 접근은 거의 없는 편이다(4-6). 말라위, 나미비아, 짐바브웨, 잠비아의 가구 조사 자료를 살펴보면, 5세 이상 비장애 아동은 9-18%가 학교에 다닌 적이 없는 반면에 장애 아동들은 24-39%가 단 한 번도 학교에 간 적이 없는 것으로 나타났다(7-10). 캄보디아의 연구는 학교에 가지 않는 비율이 무려 45%가 될 것이라고 예상한다(11%). 많은 저소득 국가에서는, 교육 자원이 일반적으로 부족하기 때문에 척수장애 아동을 비롯해 다른 유형의 장애인들이 교육을 받는 것이 매우 어렵다(12). 지속적인 재정 부족은 만성적인 교육 인력 부족, 의료 적 지원 부재, 장비와 시설 부족의 결과로 이어지고 있다(13). 예를 들어, 케냐의 사례는 고등 교육에 대한 장애물이 얼마나 심각한지 보여 주고 있다. 이런 장애물은 이용 가능한 중고등학교 시설의 부족 부터 물리적 접근성 미확보, 중고등 교육 기관의 상급 학교 진학 서비스 미비, 편견과 같은 태도적인 장벽, 일반적으로 가난한 장애 학생들의 배경에 이르기까지 다양하게 존재한다(4). 장애를 지닌 모든 아동을 교육에 참여시키려는 저·중소득 국가들이 직면하게 되는 문제는 엄청나겠지만, 특히 장애 학생 들과 그들의 부모들의 목소리를 좀 더 경청하는 것으로 상당한 진전을 이룰 수 있다(14). 비록 장애 아동과 청년의 교육 참여와 관련한 이용 가능한 근거 사례들이 있지만, 척수손상에 대한 정보를 세분화해서 제공할 수 있는 데이터는 매우 드문 편이다. 이따금씩 상황에 대한 파악이 필요한 경우 ‘정형외과적 장애’ 혹은 ‘신체장애’에 대한 데이터에서 내용을 추론할 수 있을 뿐이었다. 손상과 재활 이후 대부분의 척수손상 장애 아동은 학교로 돌아가며, 이 경우 분명한 서비스 요구가 발생한다(15). 척수손상 발생률이 10대 후반과 20대 초반에서 높기 때문에 (2장 참조), 중고등학교 교육 과정으로의 복귀에 초점이 맞추어져 왔다(16). 교육을 시작하는 소아 연령대의 그룹은 거의 예외적으로 이분척추증 장애 아동(17)이 차지하고 있다. 그리고 이분척추증 장애 아동은 척수 손상 이후 학교로 돌아가는 장애 아동과 구별되는 특별한 문제를 안고 있다. 그러나 늦은 나이에 발생하는 외상성, 비외상성 척수손상의 결과로 손상 연령의 분포가 상승 추세로 바뀌고 있으며 (16, 18, 19), 이는 나이가 많은 성인 척수장애 인도 학교로 복귀하거나, 직장으로 돌아가기 위해 새로운 기술을 개발하는 훈련을 통해 사고 이전에 가졌던 직무가 아닌 다른 종류의 직무를 맡을 수도 있다는 것을 의미한다. 다른 코호트보다 이분척추증 아동에 대해서는 비교적 좀 더 알려진 상황이다. 왜냐하면, 이분척추증 아동은 이들이 경험할 수 있는 다양한 신체적, 정신적, 감정적 문제가 결부된 복잡한 교육적 요구를 가지고 있기 때문이다. 수두증을 동반하는 이분척추증은 주의력과 집중력 문제를 (20) 포함해, 적어도 222 척수 손상의 국제적 관점
해당 증상을 가진 아동의 3분의 1에서는 인식 기능의 제약으로 연결될 수 있고, 이는 이용 가능한 경우에, 특별한 교육 자원을 필요로 한다(17, 21, 22). 최근 연구에서 주목할 만한 점은, 이분척추증을 가진 젊은 청년의 우울증과 불안이 부실한 교육 수행 결과에 기여할 수 있다는 것이다(23). 이러한 어려움에도 불구하고, 미국에서 진행한 이분척추증 아동에 대한 종단 연구는 거의 절반의 아동이 성공적으로 고등 교육 과정까지 진학했다는 사실을 보여 주었다(24). 이 연구는 미국에서 이분척추증 아동을 목표로 한 재정 지원이 증가한 기간에 학교 중퇴율이 급격히 감소했다는 사례를 뒷받침하고 있다(25). 대부분의 척수장애 아동과 성인에게 중고등학교 혹은 상급 학교로 돌아가는 것은 쉬운 일이 아니다. 유럽과 미국에서 진행한 몇몇 샘플 연구를 제외하고는 (26-29), 다른 장애 유형의 학생이나 비장애 학생과 비교해 척수장애 아동의 학교생활 경험이 전반적으로 성공인지 실패인지 확인할 수 있는 신뢰 할 만한 정보가 부족한 편이다. 영국의 질적 연구는 학교로 돌아가는 방식에 따라서 이 과정이 정신적 으로 힘든 과정이 될 수도 있다는 사실을 강조했다(30). 학교로의 복귀를 가능한 한 빠른 시간 내에 진행하는 경우 대부분 성공적이며, 되도록이면 아동이 병원에서 재활 과정에 있을 때 진행하는 것이 좋다. 모든 학생들이 동의하는 점은, 학교 복귀에 있어서 주된 문제점은 물리적인 접근성 확보 부분과 체육과 수학여행을 포함한 모든 학교 활동의 완벽한 참여를 위한 장애 학생들의 요구 수용 방법을 교육받지 않은 학교 관계자에 대한 부분이었다. 중고등학교 이후 상급 학교인 대학에서의 교육은 일반적으로 문제가 약간 덜한 것처럼 보인다. 왜냐 하면 학생들이 보다 성숙하고, 척수손상에 대해 보다 많은 경험을 했으며, 자신들이 필요한 내용을 알기 때문이다. 예를 들어, 미국에서는, 일반 학생의 53%에 비교해, 이동에 제약이 있는 청년들의 43%가 중고등학교 이후의 상급 학교인 대학에 진학하는 것으로 나타났다(31). 한 연구에서는 응답자의 82%가 대학에 진학한 것으로 나타났다(31). 미국의 전국 종단 전환 연구 2에서도 유사한 결론이 드러났지만, 시각 혹은 청각 장애 학생의 77%가 계속해서 상급 학교에 진학하는 차이점도 보여 주었다(31) 유럽에 서는, 비록 최근에 이동에 불편을 겪는 학생들의 대학 진학률이 감소하기는 했지만, 수치는 비슷한 것 으로 나타났다(33).
교육과 관련된 장해 요인에 대한 대처
아동과 성인 척수장애인이 직면하게 되는 교육과 관련한 수많은 장애물을 파악하고 이해하기 위해서는 다음의 세 그룹으로 대상을 구분하는 것이 중요하다. 즉, 이분척추증 아동, 재활 이후 학교로 돌아가는 아동과 청소년 장애인, 척수손상 이후 새로운 고용 전망과 관련된 기술과 지식을 습득하기 위해 재교 육을 받는 성인 장애인이 각각의 그룹이 된다. 8. 교육과 고용 223
▶ 법률과 정책 장애인 권리 협약 24조는 모든 장애인들에게 모든 수준의 교육을 받을 권리를 줄 수 있도록 하는 법률, 정책, 그리고 프로그램 차원에서 요구되는 지침을 명확하고 세밀하게 제시하고 있다(1, 12). 일부 고소득 국가에서는 교육에서 배제되는 개인적 불만을 해소하기 위하여, 영국의 장애인 차별
금지법(Disability Discrimination Act)과 같은 일반적인 차별 금지 규정을 포함하는 통합 교육의 원칙을 이행하기 위해 법률과 정책을 마련하고 있다. 그러나 법률은 선제적인 조치가 취해질 경우 더욱 효과적이다. 예를 들어, 덴마크에서는 교육부(Ministry of Education)가 장애인이 비장애인과 동등한 교육 코스를 이수해 학문적으로 성공하는 데 필요한 보조 기기를 제공할 것을 법률로 요구 하고 있다. 프랑스에서는, 학교가 장애 학생들을 위해 긍정적인 조치를 취하고, 물리적 또는 교육학 적으로 학업에 도움이 되는 과정을 채택할 것을 요구하고 있다(33). 저·중소득 국가에서는 교육에서 장애 아동 배제를 명백하게 허용하는 법을 포함해 종종 법률적 장애물이 존재한다(34-36). 유네스코는 이러한 국가에서 통합 교육의 가장 큰 장애물은 통합 교육을 지지하는 법률과 정책 프레임워크를 만들지 못한 것이라고 결론지었다(37). 심지어 정부가 완전 하고 접근 가능한 교육의 장애물을 확인하는 데 있어 주도적인 역할을 하고 있는 남아프리카공화국 같은 국가에서도 법률과 재정 지원을 통한 프로그램의 부재는 통합 교육의 진전을 더디게 만들고 있다(38). 농어촌 지역 사회의 상황을 고려하지 못한 하향식 접근 방법은 성공할 가능성이 별로 없다(39). 국가는 실행 가능한 교육 정책을 위한 근간을 마련하고 장애 아동의 교육권과 관련한 일반적인 약속을 마련하기 위해 실질적인 절차를 이행할 필요가 있다. 이러한 단계에는 장애 아동의 수와 그들의 요구 파악, 접근 가능한 학교 건물을 만들기 위한 전략 개발, 장애 아동의 수요에 맞추어 커리큘럼과 교수 방법 및 교보재 개정, 장애 아동의 요구에 따라 훈련된 교육가가 제공하고 부모와 지역 사회의 자원을 활용하는 교육 역량의 개발 등의 내용이 포함된다. 이러한 모든 조치는 적절하고 충분한 재원으로 지원이 되어야 한다(36).
▶ 이분 척추증 아동 지원 대략적으로 수두증을 동반한 척수막 탈출증을 가진 아동과 성인의 절반은 특수 교육을 받을 가능성이 높고 교육적 결과가 좋지 않은 반면에, 나머지 절반은 비장애인 학생과 유사한 결과를 보여 주고 있다(17). 일반 학교 안에 모든 이분척추증 아동의 학습에 최적화된 환경을 마련하는 것이 쉬운 일은 아니다. 그러나 발작과 변실금, 요실금을 포함한 이분척추증 아동의 의료적 합병증 경향에도 불구 하고, 준비가 완벽하고 교육적 자원이 충분히 마련된 환경에서는 이분척추증 아동이 전체 일반 아동과 동등한 수준의 초등, 중등 교육에 참여 및 졸업률을 달성할 수 있다(24, 40).
224 척수 손상의 국제적 관점
이분척추증 아동을 위한 지원 환경 제공에 관한 추가 연구가 필요하다. 또한 이러한 아동의 자신감과 자립심을 키워 주는 활동도 필요하다(41). 일주일간의 캠프에서 진행된 통합 자기 관리, 목표 개발, 기타 자립 기술에 대한 소규모 연구는 자신감 부족을 극복하기 위한 노력이 상당한 성과를 거둘 수 있다는 사실을 보여 주었다(42). 대부분의 이분척추증 아동은 성공적으로 주류(일반) 학교에 참여할 수 있으며 좋은 교육적 성과도 거둘 수 있다. 따라서 아동을 지원할 수 있는 교사, 학교 직원, 부모가 함께하는 조화된 노력이 필요하다. 이를 통해, 아동은 주류 학교에서 긍정적인 사회적 관계 형성의 기본인 내재적 동기와 자립심을 키울 수 있다(43, 44). 게다가 빈곤한 지역에서는 이분 척추증 아동이 정말로 어려운 상황임에도 불구하고, 동아프리카에서는 지역 사회 후원자와 부모가 문화적으로 꼼꼼한 방법을 통해 함께 노력함으로써 성과를 달성해 왔다(45).
▶ 손상 이후 학교로 돌아가기 손상 이후 가능하면 빨리 학교로 돌아가는 것이 재활의 우선적인 목표이며, 지속적인 학습 의지가 재활 목표 설정 과정의 한 부분이 되어야 한다(26, 32, 46, 47). 교육은 항상 지역 사회 참여 증가, 고용, 높은 수준의 자립 생활, 초등 중등 학령기에 척수손상을 경험한 성인 장애인의 높은 삶의 만족감과 관련이 있는 것으로 확인되어 왔다(48, 49). 어떠한 아동이든지 최선의 선택은 주류 학교에 가는 것이다. 홈스쿨링, 개인 단독 교습, 정규 수업 시간 이외에 개인 교습 등은 두 번째로 고려할 수 있는 선택 사항이다. 이런 선택지는 척수장애 학생에게 추가적인 학습 지원이 필요하거나 물리 치료나 작업 치료 때문에 너무 자주 수업에 참여하지 못한 경우에만 고려되어야 한다(29). 최근에 런던에서 진행한 척수장애 아동의 학교 경험 연구에 따르면, 성공적인 학교생활의 주요 요소로 다음의 내용을 강조하고 있다. • 재활 전문가가 참여한 가운데 장애 아동, 부모, 학교 관계자의 조기 접촉 • 학교의 모든 영역에 완벽한 접근을 보장하기 위해 장애 아동이 학교로 돌아오기 전에 동정이나 비하하지 않는(non-stigmatizing) 내용을 담아 계획 및 실행한 시설 개조와 편의 제공 • 학교 관계자가 특히 , 체육 수업 (50)과 학교 여행을 포함한 모든 학교 활동에 장애 학생의 통합을 보장 할 수 있는 완전히 접근성이 확보된 프로그램 • 다름을 인정할 수 있도록 연령에 맞춘 동급생 교육 프로그램과 더불어 모든 학교 관계자를 대상으로 척수 손상 및 관련 상태에 관한 현장 교육 제공
이 연구와 유사한 연구 (29, 32, 51)를 통해, 장애 아동이 학교로 돌아가기 전에 학생과 부모의 관심을 끌어올리고 비공식적 상황(예: 야간 모임 이벤트)에서 문제를 논의할 수 있는 메커니즘을 수립할 필요가 있다는 점이 확인되었다. 장애 학생의 성공적인 학교 복귀와 학교생활의 참여에서 중요한 요소가 재활 전문가의 장애 아동 격려라는 근거가 제시되고 있기 때문에 재활 전문가는 이러한 이벤트에 반드시 참여해야 한다(52, 53). 또한 동료 상담도 손상 이후 청년 장애인이 학교로 돌아가고 학업을 지속할 수 있는 동기 부여를 위한 좋은 방법이라고 알려져 왔다(54). 여기서 과도한 보호는 자제되 어야 한다(30). 8. 교육과 고용 225
▶ 상위 교육 기관으로의 진학 장애를 지닌 아동의 경우, 중등 교육 이후 학교를 떠나 상위 교육으로 옮겨가는 것에 관련해 새로운 상황과 환경에 대한 적응 및 편의 시설에 대한 어려움으로 다른 아동보다 더 많은 스트레스를 받는다. 다만 다양한 지원 자원이 있는 사람은 그렇지 않은 사람보다 상급 학교 진학 문제에 있어 적응이 수월한 편이다(25). 또한 적절한 보조 기기 기술의 이용 가능성도 원활한 진학 과정의 핵심적인 요소 이다(55). 이러한 학교 진학 기간의 동기 부여와 신뢰 구축에 있어서 부모는 중요한 역할을 수행하게 된다. 척수장애 아동의 진학 스트레스 대처를 위한 동료 멘토링 (54), 가족과 아동의 자신감 증진과 자립심 고취를 위해 함께 이용할 수 있는 웹 기반 정보는 (41) 진학에 대한 감정적, 심리적 준비를 위해 좋은 방법이다. 미국의 ‘중등 교육과 고등 교육으로의 이행을 위한 국립 센터(National Center on Secondary Education and Transition: NCSET)’의 2004년 약식 보고서(56)는 이행(진학)에서 발생하는 주요한 문제에 관해 가능한 해결책을 아래와 같이 제시했다. • 일반 교육 커리큘럼 안에 커리어 개발 기술을 접목시켜 학생의 자기 결정과 자기 옹호를 증진시킨다. • 추가적인 편의 제공이나 변경의 요구 없이 많은 학생들이 교실, 교육 과정, 시험 과정에 참여할 수 있도록 유니버설 디자인 원칙을 적용한 일반 교육 커리큘럼에 학생들의 접근을 보장한다. • 자퇴 방지와 개입의 우수 사례에 관한 연구 기반의 정보를 확인, 문서화하기 위한 방법과 절차를 개발해서 장애 학생의 졸업률을 높이도록 한다. • 교육 계획, 인생 계획, 의사 결정에 앞서 부모에게 사전 통보를 해 부모의 참여와 개입을 높이도록 한다. • 학생 평가, 개인별 교육 계획 및 지도 시 일반 교육과 특수 교육의 협력 증진을 위해 일반 교육 교사와 특수 교육 교사 간의 교차 교육(cross-training)과 같은 방법을 사용한다.
대학 진학 문제에 관한 한 OECD 보고서는 중등 교육과 상급(고등) 교육 간에 존재하는 격차를 줄이기 위해서는 양쪽 교육 분야의 협력적 노력이 필요함을 언급했다(33). • 중고등학교들은 상담 및 다른 지원들을 반드시 제공해야 하며, 이는 매우 효과적인 것으로 증명되어 가고 있다(57). • 대학은 장애 학생의 입학과 성공적 수업 참여를 촉진하기 위해 자신들의 입학 전략과 교육 편의 시설 재점검이 필요하다.
진학(전환)을 위해 광범위한 대학 지원 서비스를 중심으로 대학의 관련 부서와의 협력이 필요하고 학생 적응을 위한 사전 계획도 수립되어야 한다. 수업과 자립 생활 지원을 위해 장애 학생의 적응을 돕는 방법으로는 필기를 대신 해 주는 노트테이커, 강사, 보조 기기, 강의실의 물리적인 개선, 자립 생활 지원 등이 포함된다(31, 58, 59). 저·중소득 국가와 관련해서 교육 접근, 전환, 평등에 관한 연구 컨소시엄(Consortium for Research on Educational Access, Transitions and Equity: CREATE)이 방글라데시, 가나, 인도, 남아프리카 공화국과 영국의 연구소 간의 파트너십으로 2006년에 설립되었다. 컨소시엄의 첫 번째 논문은
226 척수 손상의 국제적 관점
장애 아동의 ‘배제 지역’ 분류 – 완전한 배제부터 중고등학교에는 입학하지만 졸업 이전에 중퇴할 위기에 놓여 있는 상황까지 - 를 기반으로 한 연구 의제를 제시하고, 이러한 다양한 상황을 대상 으로 한 교육 정책에 대한 의견을 제시했다(60). 후속 논문은 아프리카 전역에 걸쳐 교습법과 관련된 구체적인 어려움과 잠재적인 전략적 대응책에 대해 강조했으며 (14), 성 불평등이 척수장애 아동이 당면한 문제를 얼마나 복잡하게 만들고 있는지도 지적했다.
▶ 물리적 장애물 제거 남아프리카공화국의 하지마비 학생들과 (61) 말레이시아의 이분척추증 아동의 (62) 참여를 제약하는 주요 원인은 기본적인 이동에 대한 장애물인 것으로 연구에서 나타났다. 탄자니아에서는 학교의 접근성이 좋지 않은데, 그 이유는 많은 학교가 우기에 침수 방지를 위해 주춧돌 위에 세워졌으며, 학교 내부에는 화장실이 접근 불가능하고 출입구가 휠체어가 통행할 만큼 넓지 않기 때문이다(63). 영국의 연구에서는 너무 경사가 급한 계단과 경사로, 장애인용 화장실 부족, 장애인용 주차 공간 부족 등이 휠체어 이용 학생의 교실, 식당, 도서관, 스포츠 시설 이용을 가로막는 장애물이라고 강 조하고 있다(30). 그러다 보니 우회로 이용이나 접근 지연으로 인해 장애 학생은 수업 시간에 맞추어 도착하지 못하고 있다(64). 특히 접근 불가능한 교통은 스스로 학교에 갈 수 없는, 이동에 어려움이 있는 아동에게는 부담이 되는 부분이다. 왜냐하면 통학 거리가 너무 멀고 농어촌의 길은 평평하지 않고 우기 때에는 도로가 침수되기 때문이다(61). 이러한 장애물의 대부분은 정책과 계획의 개선을 통해 극복할 수 있다(33, 65, 66). 심지어 자원이 제한적인 지역에서도, 일정 기간 물리적 장애물 제거에 우선순위를 정해 처리함으로써 상태를 개선 시키는 것이 가능하다. 예를 들어, 케냐에서는 2015년까지 정부가 지역 학교에 우선적으로 경사로와 기타 편의 시설 설치를 계획하고 있다(67). 2003년 포르투갈의 리스본시는 초등학교의 물리적 장애물을 단계적으로 제거하기 위한 광범위한 전략을 포함한 에스콜라 아베르타(Escola Aberta: ‘열린 학교’)라는 프로그램을 시작했다(68).
▶ 정당한 편의 제공 비록 요구는 매우 다양하지만, 일부 척수장애 아동은 반드시 어떤 형태의 편의 제공을 통해서만 등교에 필요한 일정 수준의 독립성을 이룰 수 있고 교육의 완전한 혜택을 받을 수 있다. 이런 편의 제공 내용에는 교실의 학습 보조원이 포함될 수도 있고, 연필 그립(pencil grip)과 같은 낮은 기술의 장비부터 광학 문자 인식 시스템이나 상체 움직임에 제약이 있는 장애 아동을 위한 최첨단 로봇 팔과 같은 고급 기술 장비까지 다양한 보조 기기 기술의 형태가 포함될 수도 있다(69). 이런 모든 내용은 아동의 교육 수행과 교실에서의 수업 참여를 향상시킬 수 있고, 과제 수행을 간단하고 가능 하게 할 수 있다. 필요한 것은 무엇이고 실질적으로 효과가 있는 기술이 무엇인지 가장 잘 알 수 있는 방법은 장비를 사용해 본 경험이 있는 사람들의 정보이다. 캐나다의 프로젝트는 다양한 보조 8. 교육과 고용 227
기기 기술 솔루션에 관한 동료 간 정보 공유를 지원하고 (70), 중도 장애인들이 이런 문제를 통해 생각해 볼 수 있는 논의의 지침을 제공하고 있다. 비록 컴퓨터와 다른 기술이 척수장애 아동에게 많은 편의를 가져다줄 수 있을지라도, 아이들이 이런 장비를 사용하는 것을 돕기 위해서는 종종 숙련된 교사와 교실 학습 보조원이 필요하다(29, 71)
▶ 교육과 편의 시설에 대한 펀딩 장비가 됐든 혹은 지원 인력이 됐든 편의 제공을 위해서는 안정적인 자금 확보가 필요하다. 고소득 국가에서는 정부 교육 보조금 혹은 대출, 대학의 경쟁 장학금, 민간 교육 펀드와 장학금, 민간 보험과 같은 장애 학생을 위해 배정된 많은 잠재적인 펀드(자금)가 존재한다(33). 미국에서는 3차 (고등) 교육 장애인 지원 예산의 78%가 장애인 장학금이나 대출로 배정되고 있으며 (33), 교육 보조 기기 기술 자금 지원이 가능한 다양한 연방 정부 계획이 있다(72). 영국에서는, 장애 학생 지원금 (Disabled Students Allowance)을 통해, 특수 교육 장비, 활동 보조인, 추가 여행 경비 등에 직접적 으로 세금이 감면된 비용을 제공한다(73). 아일랜드에서는, 정부 펀드를 우선적으로 장애 학생에게 자금 지원을 하는 대학에 배정하고 있다(74). 또 다른 방식은 척수장애 학생들의 추가 비용을 개인별 대출이나 사례별로 제공하는 부분 장학금으로 상쇄할 수 있도록 보장하는 것이다. 이는 프랑스와 노르웨이에서 시행하고 있는 방식으로, 졸업생이 그러한 대출금을 상환할 능력이 없을 경우 무조건 증여금(outright grants)으로 전환시켜 주는 규정을 마련하는 것이다. (33). 저소득 국가에서는, 특별 펀딩 방식을 장애 학생들이 이용할 가능성이 높지 않다. 비록 장애 아동의 일반 학교 통합이 비용 효율적인 것으로 연구에서 드러났고 심지어 편의 제공에 대한 추가 비용까 지도 고려하더라도 ((75)의 연구 검토 참조) 경제적인 것으로 나타났을지라도, 많은 국가에서는 이러한 잠재적인 절감 방법을 활용할 수 없다. 원칙적으로는 적어도 저소득 국가에서는 고소득 국가의 다양한 펀딩 전략이 잘 진행됐는지 혹은 실패했는지를 살펴볼 기회를 가질 수 있다(76), 예를 들어, 우간다에서는 자국의 장애 학생 교육에서 좋은 결과를 내기 위해 유럽과 미국의 몇몇 통합 교육 펀딩 방식의 부분적인 내용을 가져와 통합해 하나로 만들었다(37). 그러나 고소득 국가의 펀딩 내용을 채택한 방식이 항상 최선의 방식이 아닐 수도 있다. 왜냐하면 농어촌 지역에서 교육의 우선적 목표는 장애인이 지역 사회에서 생활과 일을 할 수 있도록 준비를 시키는 것이 될 수도 있고, 따라서 이는 최선의 펀딩 운영은 해당 지역 사회의 요구와 보다 밀접하게 관련된 내용이어야 한다는 의미일 수도 있기 때문이다(39).
▶ 사회적 지원 이차 혹은 고등 교육 과정에 있는 청년이라도 자립은 대개 가족, 친구, 동료와 같은 사회적 지원 네트워크의 존재에 달려 있다. 척수손상으로 인한 단절은 청년에게 있어 친구와의 연결이 끊어지는 것을 의미할 수도 있고, 학교에서 멀어지는 시간은 사회로부터의 전반적인 고립으로 이어질 수 있다. 228 척수 손상의 국제적 관점
사회적 지원은 일반적으로 척수장애인의 삶의 만족, 건강, 심지어는 죽음까지도 결정할 수 있는 요인 이다(77). 비공식 멘토링 시스템은 척수장애 아동이 학교나 사회적 삶으로 돌아갈 때 유용한 것으로 밝혀졌으며 (54, 59), 척수장애인 동료와의 상호 작용은 특히 중요하다(78). 권익 옹호 그룹, 척수 장애인 지원 그룹, NGO는 장애 학생과 가족을 지원하는 데 있어서 일반 경험을 공유함으로써 중요한 역할을 수행할 수 있는 사회적 네트워크의 핵심적인 부분이다. 영국에서는 백업 트러스트(Back Up Trust)가 척수장애인을 위한 멘토링 서비스를 운영하고, 척수손상과 함께하는 삶의 적응, 학교로의 복귀, 기타 다른 문제에 대해 조언이 필요한 사람들과 멘토를 연결해 주는 일을 하고 있다(79). 장애를 지니고 사는 생활의 어떤 영역에든 지출할 재원이 매우 제한적인 그룹들을 포함한 다른 나라의 여러 그룹들이 이와 유사한 역할을 수행하고 있다. 뭄바이에 기반을 둔 ‘장애인 비장애인 모두 함께(Able Disabled All People Together: ADAPT)’ 단체 산하의 통합을 위한 인도 국가 자원 센터(India’s National Resource Centre for Inclusion)는 1972년부터 장애 아동에게 지원과 멘토링을 제공해 오고 있다.
▶ 태도적 장애물에 대처하는 방법 장애 아동과 장애 청년이 재활 시설에서 학교로 돌아갈 때, 혹은 이분척추증이나 소아 척수손상을 가지고 학교에 처음 입학할 때는 단순히 물리적·제도적인 것뿐만 아니라 태도적 장애물에도 직면하게 된다. 성공적으로 교육에 참여하기 위해서는 척수장애에 대한 무지와 오해를 떨쳐버리는 것이 요구 된다. 척수장애 아동과 청년, 가족은 또한 척수손상에 대해서 배워야 하며, 학교로 돌아가거나 이차 교육에서 상급 교육 기관으로 진학할 때 필요한 내용을 예측할 수 있어야 한다.
척수장애 학생과 가족 학교로의 복귀를 고려하는 경우, 척수장애 아동은 동급생들이 자신을 받아들여 주지 않을 수도 있다는 걱정을 할 수 있다. 그리고 아이들이 자신의 척수손상에 잘 대처하지 못하고 부적응, 근심, 우울증과 같은 증상을 경험하거나 심지어 자제력을 잃어버릴 수도 (81) 있다는 몇몇 사례들이 있다 (23, 80). 이런 상황에 잘 대처하지 못하면, 이는 고립, 외로움, 친구의 부재, 미래에 대한 불안감이 더 심화되는 상황으로 발전할 수 있으며, 그 결과로 좋지 못한 교육의 결과가 나올 수 있다(27). 학교로 돌아온 척수장애 아동은 자신이 재학하는 학교와 참여하게 될 정규 활동의 특징에 대해서 알아야 한다. 즉, 부모나 교사와 관련된 내용보다 자신과 관련된 문제를 숙지해야 한다(51). 이는 척수장애 아동 스스로 자신이 숙지해야 할 내용이 무엇인지 파악하는 것이 부모, 교사, 전문가들이 장애 아동이 필요하다고 생각하는 내용을 인지하는 것보다 더 중요할 수 있다는 의미이다. 이후의 교육 과정에서, 척수장애 학생들에게는 자신들의 동급생처럼 상급 학교 진학과 향후 취업에 도움이 되는 상담과 취업 서비스가 필요할 것이다(53).
8. 교육과 고용 229
척수장애 아동과 가족은 척수손상, 이분척추증, 특히 자기 관리에 대한 실제적 정보를 포함한 기본적 의료 정보를 제공할 수 있는 웹 기반 시스템을 통해 혜택을 볼 수 있다(41). 척수장애인 지원 그룹은 여러 나라에 존재하고 있으며, 이들은 가족에게 중요한 정보와 일반적 관심사를 함께 공유하고 있다. 부모가 학교에서 자신의 장애 아이가 안전할지, 동급생들이 아이를 사회적으로 잘 받아들여 줄지 여부에 대해 걱정하는 점은 이해할 수 있다(27). 그러나 과보호는 척수장애 아동을 더욱 고립시킬 수 있기 때문에 (26), 부모는 자신의 걱정을 완화시킬 수 있는 지원 그룹을 찾는 데 있어 재활 전문가나 교사의 조언을 구해야 한다.
교사, 학교 관계자, 동급생 통합 환경 촉진 및 관리 측면에서 교장과 교사의 태도는 매우 중요하며, 잘 계획된 정보와 지원 전략은 이러한 태도에 긍정적인 영향을 미칠 수 있다(39, 50, 61, 82). 교사는 일반적으로 지적 장애가 있는 학생들보다는 이동에 문제가 있는 학생들에게 더 긍정적인 태도를 취하곤 한다(83). 문헌 검토에 따르면, 환경의 개선만큼 교사, 학교 직원, 학생들을 위한 아주 기본적인 ‘장애 인식’ 프로그램이 성공적 사회 통합에 요긴하다는 사실이 드러났다(84). 이는 보츠와나와 레바논 사례에서 확인되었다 (85, 86). 예를 들어, 조지아 공과 대학교의 보조 기기 기술 및 환경 접근성 센터(Center for Assistive Technology and Environmental Access)는 고등학교 수학과 과학 교사들에게 무료 온라인 코스를 제공했으며, 이를 통해 교사들은 교실의 편의 시설, 시험 관련 편의 제공 및 실험실 개조, 보조 기기 기술, 법과 정책 등을 배울 수 있었다(70). 척수손상으로 인해 발생하는 내용이 무엇인지, 어떻게 지원해야 하는지에 대한 정보가 부족한 경우, 교사와 학생들은 일반적인 장애에 대해서 그리고 구체적인 척수손상과 관련된 기본 정보를 제공하는 매체나 도구를 통해 도움을 받을 수 있다. 교실에서 장애에 대한 기본 정보, 특히 척수손상 문제와 관련해 활용할 수 있는 쉽게 접근이 가능한 자원이 있다. 예를 들어, 유네스코는 통합 교육 친화적인 환경 구축을 위한 툴키트(도구)를 만들었고 (87), OECD는 학교 환경에서 다양성을 지원하기 위해 교사, 학교 직원, 학생들에게 필요한 내용을 단계별로 기술한 정보를 제공하고 있다(88). 교사는 통합 교육을 현실적으로 실현시키는 데 직접적이고 결정적인 역할을 수행한다. 이는 특히 심각한 장애가 있는 아동을 주요 체육 수업에 참여시키는 과정에서 종종 어려움에 직면하는 체육 교사들에게 해당되는 부분이다. 체육 수업 과정은 통합 교육의 목표, 기능에 제한이 있는 아동을 위한 적절한 운동 활동, 안전 고려 등의 균형을 맞출 수 있는 방법으로 진행이 된다. 스웨덴의 연구에 따르면, 이러한 과제를 충족하며 이룩한 성공은 적절한 훈련, 학교 직원의 지원, 적절한 자원 제공의 결과임을 보여 주었다(50). 현재는 교사 교육 기관에서 장애 학생이 있는 교실의 경우, 효과적으로 수업을 진행하는 방법에 대해서 신규 교사들이 훈련을 받아야 한다는 인식이 높아지고 있다(89). 또한 장애 아동에 대한 정보가 이분척추증같이 의학적 진단 측면이 아니라 교사가 학생을 가르치는
230 척수 손상의 국제적 관점
방법에 있어 실질적인 차이를 만들어 낼 수 있는 기능적 문제와 가치 측면에서 제공될 때, 교사는 보다 적극적으로 그 정보를 수용하려고 하며, 장애 학생이 학교 활동에 통합되는 데 도움이 되도록 해당 정보를 사용한다는 증거가 있다(83). 일반적으로 필요한 것은 척수손상에 대한 기본적 의학 정보가 아니라, 어떤 척수장애인의 생명에 위협이 될 수도 있는 자율 신경 이상 반사증과 같은 건강 상태에 대한 정보이다(15). 교사는 또한 이분척추증과 연관된 혹은 외상성 두뇌 손상에 동반하는 합병증도 잘 인식하고 있어야 한다(19). 교사는 종종 척수장애 학생들이 자기 결정과 자립에 대한 어려움을 겪고 있으며, 이런 문제들을 터놓고 이야기할 준비가 되어 있지 않을 수도 있다는 사실을 알고 있어야 한다 (90). 이는 재활 치료사가 대처할 준비를 해야 하는 상황이라고 할 수 있다(78). 보다 직접적으로 초등학교에서 종종 장애 아동과 상호 관계를 맺게 되는 교실의 학습 보조원은, 척수손상 및 감정적, 심리학적 영향을 포함한 척수손상의 복잡한 상태에 대해 교육과 정보를 제공받아야 한다(30).
척수손상과 고용에 참여
대부분의 척수장애인은 직장에서 적절한 편의가 제공되는 경우에 일을 할 수 있고 사회의 생산적인 구성원이 될 수 있다. 안타깝게도, 많은 척수장애인과 다른 장애인들은 일과 삶의 기회에서 배제되고, 그로 인해 장애인과 가족들은 빈곤한 삶을 살며 주류 사회로부터 소외되고 있다. 이러한 배제는 척수 장애인에도 힘든 일이지만, 또한 다른 문제의 원인이 되곤 한다. • 배제는 귀중한 인적 자원을 낭비하는 일이다. 대표적인 저·중소득 국가에서 장애인의 실업과 불완전 고용이 경제에 미치는 영향은 국내 총생산의 3-5%를 차지하는 것으로 추정된다(91). • 고용은 척수장애인의 주요한 재활의 결과물이라고 할 수 있다(92). 왜냐하면 고용이 척수손상에 대한 적응, 삶의 만족, 목적의식, 정신적 자극, 사회적 접촉, 웰빙 등과 절대적으로 관련되어 있기 때문이다(93-96). • 실업과 불완전 고용으로 인한 낮은 소득은 척수손상 이후의 높은 사망률 (77, 97)을 비롯해 일반적으로 좋지 않은 건강 상태와 관련이 있다(93, 98-100).
최근에 척수손상과 실업에 관한 50개의 연구를 체계적으로 검토한 결과, 비록 척수손상 이후 몇몇 시점에서 취업률이 68%로 나타나는 경우도 있었지만, 전 세계적으로 척수장애인의 평균 취업률은 37%에 지나지 않는 것으로 나타났다(101). 대륙별로 척수장애인의 현재 평균 취업률은 유럽이(51%) 제일 높고, 북미가(30%) 제일 낮은 수준을 보여 주고 있다. OECD 국가의 경우, 이러한 평균 수치를 통해 최중증 장애인의 실업률을 비교할 수 있다(102). 2000-2006년 전 세계 척수장애인의 직장 복귀에 관한 자료를 검토한 결과에 따르면, 직장 복귀율은 21-67% 사이로 나타났으며, 전반적인 취업률은 11.5%에서 74%로 나타났다(103).
8. 교육과 고용 231
상기의 두 가지 체계적인 검토의 결과 차이는 주로 고용 정의의 차이에서 기인하는 것이다. 고소득 국가에서는 척수장애인의 고용에 대한 좋은 데이터가 있지만, 상대적으로 저·중소득 국가에서는 데이터가 부족하고 (104), 고용률이 천차만별로 나타난다. 말레이시아 57% (105), 방글라데시 50% (106), 인도 41% (107)처럼 몇몇 연구에서는 응답 척수장애인의 거의 절반이 직장으로 복귀한 것으로 나타났다. 그러나 다른 국가에서의 상황은 더욱 좋지 않은 편이다. 예를 들어, 짐바브웨 국립 재활 센터에 입원한 136명의 척수손상 환자 추적 연구에서는 응답자의 13%만이, 그리고 사지 마비 환자는 단 한 명만 취업에 성공한 것으로 나타났다(108). 겉보기에 좋은 통계 결과 때문에 장애인이 취업 가능한 일자리가 종종 임금 수준이 매우 낮다는 사실을 흐릴 수도 있다(109). 직장으로의 복귀를 위한 지원 제공은 고용 결과의 차이를 만들어 낼 수 있는 주요 요인이다. 비외상성 척수손상은 주로 고령에 발생하기 때문에 고용 관련 정보는 주로 외상성 척수손상에 맞추어져 있다. 실업으로 특히 심각한 타격을 받는 이분척추증을 가진 젊은 장애인은 예외의 경우이다. 비록 유럽과 미국의 자료만 확인해 볼 수 있지만 비장애인 (40, 44)과 다른 중증 만성 질환을 가진 사람 (110)의 취업률(75%)과 비교했을 때, 젊은 이분척추증 장애인의 정규직 혹은 비정규직 취업률은 36% 에서 41%에 지나지 않는다. 네덜란드에서 진행된 대규모 연구에서는 비교적 높은 취업률(62.5%)을 보여 주었으나, 많은 응답자가 일반 직장보다는 보호 작업장에서 근무하는 것으로 나타났다(43). 저·중소득 국가의 척수장애인 고용 데이터가 부족한 한편, 명확한 것은 고소득 국가에서도 척수손상 이후 장애인의 실업률이 매우 높다는 사실이다. 지속적인 실업 원인에 대한 추가 연구가 필요하며, 가능하다면 일반적으로 장애와 관련된 취업의 장애물과 척수손상과 관련된 취업의 장애물을 구분하는 것도 필요하다(111).
고용과 관련된 장애물에 대처하는 방법
고소득 국가에서는 취업을 결정짓는 요인과 척수장애인이 손상 이후 직장으로 복귀하거나 혹은 처음 으로 취업할 때 이를 가로막는 요인을 밝혀 주는 좋은 사례들이 있다(96, 103, 112-115). 성별은 취업에 있어 확실한 결정 요인은 아니지만 (92, 98), 손상 당시 연령, 손상 이전의 교육 수준이 취업과 보다 깊은 관련이 있다(48, 98, 116-120). 나이가 어리고, 교육 수준이 높고, 부상 정도가 가벼운 경우에 손상 이후 보다 빨리 일자리를 찾을 수 있으며 취업이 될 가능성도 더 높은 것으로 나타났다(120, 121). 백인이 다른 인종보다 취업 가능성이 높기 때문에 미국에서는 인종도 취업에 있어 중요한 결정 요인 이라고 할 수 있다(81, 120-123).
232 척수 손상의 국제적 관점
손상 정도가 심하고 기능적인 어려움이 많은 사람일수록 취업 가능성도 낮아진다(48, 98, 117, 124-127). 손상 정도의 모든 수준에 있어서 취업률은 시간이 지나면서 상승하게 된다(81, 128-130). 그럼에도 불구하고 이차적으로 합병증이 발생한 상태에서는, 특히 병원에 입원이 필요한 경우, 직업을 구하거나 직업을 유지할 수 있는 가능성이 줄어든다(100, 122, 131). 그러나 취업에 있어 가장 큰 장애물은 인구 통계학적, 생물 의학적, 심리학적 요인보다 환경적 요인인 것으로 나타났다(132). ‘척수손상 재활 사례(Spinal Cord Injury Rehabilitation Evidence: SCIRE)’에서 진행한 직장 복귀 결정 요인에 대한 보고 사례 평가와 문헌 검토에서는 계급적 차별과 작업장의 물리 적인 접근성 부족을 취업과 관련된 가장 중요한 부정적인 요인으로 꼽았다(115). 심지어 직무 수행에 있어 기능적인 무능력, 체력 부족, 참을성 부족과 같은 건강 문제를 강조하고 있는 연구에서도 만약 척수장애인이 원하는 직무 수행을 위해 업무나 작업장의 상황이 변화되지 않는다면 위와 같은 요인이 유일한 문제가 될 수 있다는 점을 지적하고 있다(98, 133, 134). 전반적으로 연구를 통해 누차 확인할 수 있는 사실은, 척수장애인은 직장 출근을 위한 접근 가능한 교통수단의 부족 때문에 종종 일을 할 수 없게 된다는 점이다(43, 103, 115). 이는 전 세계적인 문제이며, 특히 도시 지역보다 척수장애인의 실업률이 높은 농어촌 지역에서 더 심각한 문제이다(34, 131, 135, 136). 척수장애인의 실업 원인은 매우 복합적이며, 경제적 자립 달성 실패의 원인들 또한 마찬가지이다. 연구 전반에 걸쳐 상당한 가변성이 존재하며, 직장으로의 복귀를 예측하거나 혹은 재정적 지원에 대한 접근도 쉽지 않은 일이다. 왜냐하면 청년 장애인의 직장 복귀를 가로막는 장애물이 모두 극복된다 하더라도, 일견 직장에서의 사소한 환경적 혹은 조직적 장애물이 직장 복귀를 불가능하게 만들 수도 있기 때문이다 (112, 114). 그러나 고용과 경제적 안정을 예측하기 위한 4가지 영역을 다음과 같이 볼 수 있다. 즉, 직업 훈련과 취업 지원, 척수장애인에 대한 오해 혹은 차별, 작업장 편의 시설, 경제적 자립 보장이다.
▶ 직업 훈련과 취업 지원 취업을 통해 경제적 수입을 획득하거나 직장에서 참여를 촉진하기 위한 목적의 여러 전문 분야 참여적 접근 방법인 직업 재활은 고용 기회를 극대화하기 위해 보통은 직업 소개, 상담, 직업 훈련, 일자리 배치와 같은 보다 특별한 서비스를 포함하고 있다(137). 그리고 직업 재활은 직장 복귀를 위해서 또한 광범위한 유형의 장애인들이 최초로 ‘일을 할 수 있는’ 준비를 하는 데 있어 상당히 효과적인 것으로 나타났다(138, 139). 외상성 척수손상 이후에 기능적인 회복은 손상 이후 12개월 정도 걸릴 수도 있고, 손상을 당한 개인은 의료적 치료를 받을 시간이 필요하고 가족과 집에 대한 적응 시간도 필요하다. 포괄적인 재활을 위한 입원 기간 동안 혹은 퇴원 이후 바로 그달에 활발한 직업 훈련 계획을 시작하는 것은
8. 교육과 고용 233
비현실적인 것처럼 보일 수도 있다(113). 그러나 초기에 시작하고 지역 사회의 삶에 대한 적응을 독려하기 위한 노력이 결부된 직업 재활은 직업을 구하고 유지하는 데 있어 개인에게 더 나은 기회를 제공할 수 있다는 강한 근거들이 있다(48, 138, 139). 그러므로 직업 훈련의 목적과 생산적 라이프 스타일에 대한 예측은 이후에 직업 상담가와 보다 집중적인 노력을 준비한다는 차원에서 초기 단계의 전반적인 재활 계획에 포함되어야 한다(140). 안타깝게도 고소득 국가에서도, 척수장애인이 항상 직업 재활과 상담 서비스를 받을 수 있는 것은 아니고 (96, 141), 이러한 서비스의 요구에 대한 내용은 정책적 차원에서 결정되어야 한다. 척수장애인은 자신이 당면할 수도 있는 구체적인 인체 공학적, 기술적 문제에 대처하기 위한 특별 서비스가 필요할 수도 있다(142, 143). 척수장애인의 경우에, 직장으로 돌아가기 위해서는 직업 상담사가 제공하는 직업 배치 서비스의 여부가 중요하다는 강한 근거가 있다. 특히, 직업 배치 서비스 에는 일자리 찾기와 네트워킹, 직무 요구 사항을 개인의 기능적 강점과 약점에 매칭시키는 데 이용 할 수 있는 직무 기술서 작성, 입사 지원 기술, 면접 준비 등이 포함된다(118). 직업적, 교육적 필수 조건을 포함해 직업 결정 과정에 도움을 주기 위한 취업 기회와 관련된 정보 제공이 이런 서비스의 중요한 부분이다. (94, 143). 척수장애인을 위해 필요한 일반적인 사회적 지원은 성공적인 재고용을 위해 중요한 요소로 인정되고 있다(132). 외상성 손상 이후에, 많은 사람들은 일에 필요한 직무를 수행할 수 있는 능력이 더 이상 없다고 믿고 있다(124, 144, 145). 삶의 통제력과 자존감의 상실뿐만 아니라 우울증과 같은 다양한 심리학적 요인은 직장으로의 복귀를 어렵게 만들 수도 있다(146-148). 우울증과 같은 심각한 정신 질환은 전문적인 도움이 필요할 수도 있으나, 대부분의 경우 척수장애인 동료, 가족, 친한 친구의 사회 심리적 지원이 장애인의 직장 복귀 격려에 있어 가장 효과적일 수 있다(149, 150). 이는 일반적 으로 비공식 지원 네트워크에 보다 의존하고 있으며 이용할 수 있는 자원이 많지 않은 환경에서 매우 적절한 방식이다(109). 아동과 청소년, 특히 이분척추증을 가진 경우에, 직업 상담가는 학교에서 직장으로의 대규모 전환 프로그램에 통합되어야 한다. 비록 궁극적 목적이 미래의 취업으로 이어질 수 있는 전략 개발에 있을지라도, 우선적으로는 청년들이 학교에 계속 재학하는 데 초점을 맞추고, 이를 통해 향후 취업의 길까지 연결시켜야 한다(26, 54). 척수손상과 같이 중증 손상 관련 장애를 가진 사람들의 직장 복귀 어려움을 해결하기 위해, 고소득 국가에서는 두 가지 형태의 종합적인 직업 재활 프로그램을 운영하고 있다. 먼저, ‘취업 지원’이라고 알려진 전환 프로그램은 경쟁력 있는 직업을 구하고 유지할 수 있도록 사람들에게 도움을 주는 데 초점을 맞춘 능률적인 서비스를 제공하고 있다(143, 151). 직무 배치 이후 지원과 직업 상담가의 후속 지원과 더불어 교육에서 강조되는 부분은 직무 기술, 직무 준비 상담, 일자리 배치 서비스 등
234 척수 손상의 국제적 관점
이다(96, 128, 152). 서비스의 원래 성격상 전환 서비스는 자원 집약적이며 비용도 많이 든다. 그러나 만약 서비스가 가능하면 빨리 시작되고 다른 재활 서비스와 통합될 수 있다면, 이런 비용도 상당 부분 절감할 수 있다(96, 137). 박스 8.1에서 설명하고 있는 칼레이도스코프(만화경) 직업 재활 프로 그램은 척수장애인을 위한 프로그램의 예라고 할 수 있다. 취업 지원 프로그램은 구직자의 강점과 능력을 구현할 수 있다. 이러한 프로그램은 맞춤형 지원으 로써 적절한 직업 탐색과 선택에 있어 구체적인 요구에 맞출 수 있으며, 개인이 직무에 적응하기 시작할 때 고용주와 함께 현장 지원과 지지를 제공할 수 있으며, 취업 전 과정에 걸쳐 장기적인 지원을 지속적으로 제공할 수 있다(155). 박스 8.1. 뉴질랜드 크라이스트처치 버우드 병원의 칼레이도스코프(만화경) 프로그램 칼레이도스코프 프로그램은 초기 개입 직업 재활 프로그램으로, 척수장애인의 높은 실업률을 해결하기 위해 시작되었다. 이 프로그램은 취업 지원 모델에 기반을 두고 있으며 다음의 4가지 특징을 가지고 있다. 1. 심한 척수손상을 당한 사람들과 가족에 대한 조기 접근: 이 프로그램은 급성기 입원 1주 혹은 2주 이내에 일반적으로 시작된다. 척수손상은 종종 장기간의 병원 입원으로 이어지기 때문에 손상 환자와 가족이 함께 할 수 있는 많은 기회가 있다. 물론 이 입원 기간의 우선적인 목표는 환자의 의료적 재활이다. 그러나 또한 이 시기에 미래의 직업을 위한 가치 있는 기반을 다질 수 있고, 지속적인 일자리가 현실적으로 가능하다는 기대를 키울 수 있다. 2. 세부적인 경력 계획: 계획은 동기 부여를 통해 개인이 미래에 추구해야 할 방향을 설계할 기회를 제공한다. 더 이상 손상 이전의 일을 할 가능성이 없다면, 사람들은 미래에 대한 확신이 서지 않을 것이다. 동기 부여, 경험, 기술, 수많은 일자리의 가능성을 기반으로 한 미래 취업 계획은 사람들이 직장으로 돌아가 완벽하고 활발한 참여를 할 수 있다는 욕구를 불러일으키는 데 도움이 된다. 3. 일자리 배치 이후 지원: 이 지원의 핵심은 가능하면 원활한 직장으로의 복귀를 보장하는 것이다. 그리고 이 지원의 중요한 목적은 취업 장애인의 역량 강화를 통해 지속적인 정기 지원의 요구를 단계적으로 줄여 나가는 것이다. 그러나 모든 관련된 사람들이 명심해야 할 점은 요청이 있을 경우 혹은 지속적인 지원 체계가 다시 필요할 경우 언제라도 지원이 제공되어야 한다는 것이다. 4. 지역 기업계의 동기 부여와 지원: 지역 사회의 기업은 심각한 손상과 질병 이후에 직장으로 복귀하기를 원하는 사람들에게 제공할 수 있는 충분한 일자리가 있다. 칼레이도스코프 프로그램은 다양한 직종에 걸쳐 40개 이상의 지역 기업들로 구성된 비즈니스 네트워크를 보유하고 있다. 이들 기업의 고용주들은 자신들의 회사에 대한 정보를 공유하기 위해 서로 만남을 가지고 있으며, 회사 내의 알맞은 일자리를 구직자들에게 제공할 수 있는 직업 구인 전략을 수립하는 데도 도움을 주고 있다. 오아케(Oho Ake, ‘깨우침’ 혹은 ‘기상’) 프로그램도 같은 원칙을 기반으로 하고 있으며, 실업 상태를 경험했던 만성 척수장애인을 포함해 진행하고 있다. 출처: (154).
이 접근 방식의 핵심은 각각의 척수장애인이 기능, 직무 기술, 경험, 필요한 교통수단이 다르다는 점을 고려한 개인별 서비스라는 점이다. 이에 따라 업무와 관련한 서로 다른 편의 제공이 요구된다. 비록 높은 수준의 개인별 평가를 위해 시간이 소요될 수는 있지만, 이런 방식이 개인의 요구에 따른 상담 전문가의 더 나은 맞춤형 서비스 제공을 가능하게 할 뿐만 아니라 역량 강화를 통해 척수장애인 스스로 자신의 삶에 대한 통제권을 가질 수 있다는 여러 근거 사례가 있다(151). 비록 취업 지원 모델이 우선적으로 고소득 국가에서 사용되었지만, 가장 성공적인 사례 중 한 가지를 방글라데시의
8. 교육과 고용 235
척수장애인 재활 센터(Centre for the Rehabilitation of the Paralysed)에서 찾아볼 수 있다(박스 8.2 참조). 보호 작업장 취업 모델은 직업 재활 프로그램의 두 가지 형태 중 두 번째에 해당한다. 이 모델은 직업 전문가가 관리하는 작업장 안에서 중증 장애인이 자신에게 배당된 업무를 수행하는 전통적인 방식이다. 이 모델은 가끔씩 복잡한 요구를 가진 장애인에게 보다 현실적인 선택으로 인식되고 있으며, 종종 공개 취업 시장을 향한 첫 번째 단계로 제공되고 있다. 박스 8.3은 인도 남부에서 운영되고 있는 이런 프로그램의 사례를 소개하고 있다. 보호 작업장은 장애인을 경쟁적 고용 시장 으로 전환시키는 것과 직접적인 관계가 없기 때문에 장애인의 분리를 조장할 수도 있고, 따라서 척수장애인의 인권 증진을 위해서는 최선의 방식이라고 볼 수는 없다. 박스 8.2. 방글라데시의 척수장애인 재활 센터(CRP) 방글라데시는 가난한 나라로, 인구의 거의 절반인 1억5천만의 사람들이 빈곤선 이하의 삶을 살고 있다. 일반적인 사회 보장 네트워크가 없으며, 대부분의 장애인들은 자신들의 장애 관련 비용 보조를 위한 재정적 지원을 전혀 받지 못하고 있다. 척수장애인 재활 센터(CRP)는 척수장애인 재활 전문 NGO로, 척수장애인 재활 서비스에 대한 절박한 요청으로 1979년에 설립되었다. 설립 이래, CRP는 국제적으로 인정받는 단체로 성장해 왔으며, 현재는 신체 및 정신적 재활, 일자리 배치 상담, 직업 재훈련, 자가 고용을 위한 소액 대출 지원, 지역 사회로의 복귀 계획 수립, 안전한 주택 환경 구축, 척수손상의 특징과 결과에 대한 지역 주민 교육 등을 포함하여 광범위한 고용 지원 서비스를 제공하고 있다. CRP의 본부는 사바르에 위치하고 있으며, 두 개의 지역 직업 재훈련 센터(여성과 소녀 척수장애인을 위한 CRP-Gonokbari와 외래 환자와 지역 사회 중심 서비스 제공을 위한 CRP-Gobindapur)를 운영하고 있으며, 수도인 다카에 진료, 치료, 진단 서비스를 위한 센터를 운영하고 있다. CRP는 사고와 장애 예방 프로그램뿐만 아니라 척수 손상 문제의 홍보를 위한 권익 옹호와 네트워크 활동과 관련된 13개 지역 사회 중심 재활 프로젝트를 진행하고 있다. 추가적으로 CRP는 척수장애인과 다른 장애인에 대한 장애물과 편견을 없애기 위해 인식 개선 대중 캠페인을 진행 하고 있다. 출처: (34, 106, 156).
척수장애인 동료 상담은 오랫동안 직업 재활 프로그램의 핵심적인 요소로 강조되어 오고 있다 (140). 비록 초창기에는 직업에 접근하는 방식을 재활 전문가가 통제했으나, 연구에 따르면, 높은 수준의 전문적 지원은 문제가 될 수도 있으며, 이용자와 장애인들이 취업을 희망하는 기업과 작업장 과의 보다 긴밀한 협력이 필요하다는 점을 제시하고 있다. 직업 재활 전문가의 역할은 고용주와 장애인을 연결시켜 주고, 중증 장애인 고용에 있어 고용주가 가진 편견에 대해 대응을 하는 것이다 (141, 157). 재활 전문가는 척수장애인의 취업 목적을 강조하고, 이용 가능한 지원 측면에서 장애인 개인의 업무 관련 기능적 능력을 평가하고, 직업 경력 계획이 특정한 일자리를 찾은 이후에 끝나는 것이 아니라 이후에도 계속 진행될 수 있도록 해야 한다(143).
236 척수 손상의 국제적 관점
박스 8.3. 인도의 척수장애 퇴역 군인을 위한 보호 작업장 키르키(Kirkee)와 모할리(Mohali)에는 각각 109개, 34개의 병상을 갖춘 2개의 하반신 마비 장애인을 위한 재활 센터가 하지마비 , 사지 마비 퇴역 군인의 재활을 위해 운영 중이다 . 이 센터는 공익 신탁으로서 Kendriya Sainik Board (국방부의 퇴역 군인 부서의 한 파트: Department of Ex-Servicemen in the Ministry of Defence)와 사회 정의 역량 강화부(Ministry of Social Justice and Empowerment)의 자금 지원을 받고 있다. 이 센터의 모든 수용자는 방직, 편물, 재단, 양초 제작 기술과 같은 직업 훈련을 받고 있다. 이들은 센터 내의 보호 작업장에 고용되어 매달 소액의 월급을 수령하므로 비교적 경제적 자립을 달성할 수 있다. 이 센터의 보호 작업장은 수용자들을 위한 영구 혹은 반영구 일자리 제공을 하고 있는 것으로 간주된다. 왜냐하면 이들이 지역 사회에서 일자리를 구하는 것이 불가능 할 것으로 여겨지기 때문이다. 작업장에서 퇴역 군인들의 활동은 직업으로, 그리고 작업장은 매일 출근할 수 있는 장소로 여겨지고 있다. 이 센터는 또한 수용자의 자립을 위해 의료 치료, 물리 치료, 신체 운동, 스포츠, 컴퓨터 훈련 등을 제공하고 있다. 출처: (107).
▶ 척수손상에 대한 오해 극복 척수장애와 척수장애인의 경쟁적 고용 상태에 관한 고용주와 동료 근무자들의 근무 능력 관련 오해는 일반적으로 장애인과 특히 척수장애인의 고용 전망에 부정적인 영향을 미치는 중요한 요인으로 종종 언급되어 왔다(114, 124, 140, 152, 158, 159). 방글라데시 연구에 따르면, 어떤 고용주들은 척수 장애인 근로자를 잠재적으로 ‘아픈’ 혹은 ‘덜 생산적인’ 사람으로 인식하고 있는 것으로 나타났다 (34). 네덜란드에서는 57%의 청년 이분척추증 장애인이 고용주의 부정적인 태도로 인해 구직 활동에 어려움을 겪었다는 사실이 보고되었으며 (43), 다른 연구에서도 유사한 내용이 확인되었다(25, 41, 160). 작업장 차별에 대한 표준적인 연구에서는 비장애인 구직자가 장애인 구직자에 비해 1.78배 더 구직 가능성이 높은 것으로 나타났다. 신체적 장애가 시각적으로 더 드러날수록(예: 휠체어를 탄 경우) 고용주가 고용을 더욱 꺼린다고 알려져 있다(161). 고용 차별을 극복하기 위해서는 차별 금지 법안에 대한 의지와 구제를 위한 법률 조치가 추가적으로 필요하다. 미국의 장애인법(Americans with Disabilities Act 1990. 2007년 개정)과 같은 법안이 전 세계적으로 보다 일반화되고 있다. 척수장애인이 이런 법을 활용한 사례 연구를 보면, 성공률이 비록 매우 낮기는 하지만, 척수장애인은 소송 과정에서 다른 장애 유형의 그룹보다 성공적인 경향이 있는 것으로 나타났다(162). 차별 금지 법안이 유일한 해결책은 아니다. 연구에 따르면, 장애인 근로자에 대한 고용주의 매우 긍정적 인식 경향이 나타나고는 있지만, 이런 인식이 업무에서 특정 직원을 평가할 때 항상 긍정적인 태도로 나타나는 것은 아니었다(163, 164). 후속 연구에서는 장애인에 대한 경험이 있거나 직업 상담가가 진행한 장애 인식 프로그램을 통해 장애에 대한 지식이 높아진 고용주가 장애인 고용에서 보다 개방적인 것으로 나타났다(158). 이 연구에서 암시하듯이 만약 재활 분야 관계자들이 장애 지식이 적은 고용주에 대한 지원 제공에서 활발한 역할을 한다면 장애인의 취업 결과가 향상될
8. 교육과 고용 237
수도 있다. 예상과는 달리 최근 연구에서 밝혀진 것은 차별에 관한 인식이 직장 복귀의 낮은 가능성과는 관련이 없다는 점이며, 이는 척수장애인이 고용주의 차별적이고 편견에 젖은 태도를 잘 인식할수록 이를 성공적으로 극복할 수 있다는 사실을 제시하고 있다(145).
▶ 작업장 편의 시설 보장 성공적인 직장 복귀는 작업장의 편의 시설에 달려 있다(95, 99, 101, 103, 113, 165). 편의 시설은 물리적 접근성 문제에서 시작되었지만, 현재 편의 시설에 대한 요구는 더욱 확대되고 있으며, 고용의 경우 보조 기기 기술의 통합, 작업장의 성격과 위치에 따른 개조를 포함하고 있다. 척수손상 관련 편의 시설의 실질적인 사례는 척수장애인 당사자로부터 시작되고 있다 . 취업에 어려움을 겪고 있는 이동과 감각에 문제가 있는 266명을 대상으로 한 최근의 질적 연구에서는, 총 1,553가지의 구체적이고 세부적인 편의 시설의 요구가 확인되었다(166). 현재 작업장의 물리적 접근 향상을 위해 이용할 수 있는 다양한 정보가 존재한다. 예를 들어, 미국에 기반을 둔 작업 편의 시설 네트워크(Jobs Accommodation Network: JAN)와 같은 매우 구체적이고 실질적인 정보를 제공하는 웹 기반의 무료 정보 제공 사이트가 있다. 그리고 JAN은 척수장애인을 포함해 손상으로 인해 장애를 입은 사람들을 위해 혁신적이고 검증된 편의 시설에 대한 정보를 제공 하는 포털 사이트이다(167). 2004년 이후로, JAN은 또한 작업장 개선의 비용과 혜택을 확인하기 위하여 고용주에 대한 연구를 진행해 오고 있다. 이를 통해 지속적으로 장애인 근로자가 작업장 개선을 통해 받는 혜택을 제시하고, 작업장 편의 시설 개선으로 인해 고용주가 얻을 수 있는 혜택이 투자한 금액 이상임을 보여 주고 있다(167). 척수장애인의 요구와 관련된 작업장 개선의 예는 다음의 내용을 포함한다. 건물 입구(어떤 날씨 환경과 상관없이)부터 직무 수행에 필요한 작업장과 다른 모든 공간에 이르기까지 휠체어 접근성 보장, 휠 체어 이용자를 위한 진입로 확장과 통행로 장애물 제거, 높이 조절이 가능한 책상과 테이블을 포함한 작업장 개선, 접근 가능한 파일링 시스템과 기타 업무 지역, 화장실과 회의실, 식당과 휴게실 같은 접근 가능한 시설 등이다(168). 척수손상 근로자에게는 휠체어 편의 시설도 중요하지만, 대부분의 업무에서 척수장애로 인한 하체와 상체 기능 제약을 극복할 수 있는 보조 기기 기술에 대한 접근도 마찬가지로 중요하다. 일을 하고 있는 척수장애인을 대상으로 한 연구에서, 자신들의 업무 수행을 위해 맞춤형 전화기, 확대경, 기타 보조 기기 기술을 사용하는 대부분의 장애인들은 이러한 기술이 자신들의 생산성과 자존감을 상당히 높여 주었다고 이야기했다(144). 특히, 고용된 척수장애인은 일터에서 비장애인에 비해 컴퓨터 사용이 더 높은 것으로 많은 연구에서 드러났다(169-172). 이런 장비에 대한 접근과 사용은 성공적인 직장 복귀에서 핵심적인 부분이다. 상체 이동에 어려움을 겪는 사람들에게는 척수장애인이 헤드셋을
238 척수 손상의 국제적 관점
착용하고 머리를 움직여 마우스 커서를 조절할 수 있는, 최근에 개발된 헤드 무브먼트 이미지 컨트 롤 마우스가 필요할 수도 있다. 척수장애인에게 유용한 보조 기기 기술은 작업 현장에 완전히 통합·구현되어야 한다. 부분적으로 보조 기기 기술은 물리적 접근성의 문제이지만, 직업 재활 전문가들이 계속해서 주목하고 있는 것은 직장 동료나 고용주가 특수한 기기의 필요성을 이해하고, 장애인 근로자에게 기기 사용법에 대한 충분한 정보를 제공하고, 업무가 단절되지 않도록 기기의 유지나 보수에 관련된 기술적 지원이 필요함을 인식하도록 만드는 점이 또한 중요하다는 점이다(169, 173). 때로는 직업 관련 업무를 도와주는 근로 지원인의 도움 제공으로 업무가 수행되는 경우, 정교한 보조 기기 기술을 이용 못 할 수도 혹은 이용할 필요가 없을 수도 있다. 어떤 경우에는, 기본적인 업무 수행을 쉽게 하기 위해 물건을 운반하거나 가져오도록 훈련받은 서비스 동물들이 보조 기기 기술의 역할을 수행할 수도 있다(174). 손상이 수행 가능한 업무의 성격에 어떤 영향을 줄 가능성이 높기 때문에, ‘정당한 편의 제공’에는 업무의 성격을 변경하는 내용도 포함되어야 한다. 업무 수행에 필요한 방법이 바뀔 수도 있으며, 업무를 파트 타임으로 할 수도 있고, 혹은 작업자가 방광과 장 관리 혹은 휴식이 필요할 경우 작업장 이탈을 허용하는 내용을 포함해 업무 스케줄을 조정할 수도 있다. 최근 유럽 연구에 따르면, 60%의 청년 척수장애인이 손상 이후 직장으로 복귀했으며, 그들 중 거의 대부분이 시간의 압박 완화, 유연한 근무 스케줄, 그리고 어떤 경우에는 업무 시간을 절반으로 줄이는 내용을 포함한 업무 조정을 활용한 것으로 나타났다(141). 일과 삶의 균형 강조와 더불어 기술과 경제 변화의 시대가 의미하는 것은 장애인만이 다른 방식으로 일하기를 원하는 유일한 사람들이 아니라는 점이다. 몇몇 국가에서는, 정부가 척수장애인도 동등한 혜택을 볼 수 있는 유연 근무 시간제와 잡 셰어링 같은 프로그램을 활발히 장려하고 있다(152). 다양한 정보와 통신 기술을 활용해 원격으로 수행하는 재택근무(telework)는 교통의 장애물, 물리적 환경의 장벽, 척수손상과 이차 합병증으로 인한 피로와 같은 건강상의 제약을 극복할 수 있는 업무 방식이다(170). 재택근무의 장점은 잠재적인 사회적 고립의 위험, 환경적으로 분리될 수 있는 위험과 비교해 검토해 볼 필요가 있다. 재택근무는 또한 이동에 제약이 있는 사람들을 위해 교통 시스템, 건물, 통신을 보다 접근 가능하도록 만드는 노력을 저해할 수도 있다. 이러한 분야의 장점과 단점에 대한 추가적인 연구가 필요하다(111).
▶ 자영업 많은 저소득 국가에서, 수공예품 제작 및 농산물 판매 등의 형태로 진행되는 자영업은 종종 장애인 수입의 근원이며 척수장애인이 선택하는 직업이기도 하다(109). 또한 고소득 국가에서도, 자영업은
8. 교육과 고용 239
척수장애인에게 잠재적으로 도움이 된다. 자영업은 교통과 접근의 장벽, 직장에서의 차별, 동료들의 부정적인 태도를 벗어나 집이나 가까운 지역 사회에 일할 기회를 제공하고, 유연한 근무 시간과 환경을 제공한다. 사례들을 보면, 특히 이동이나 근골격에 문제가 있는 사람들의 자영업 종사 비율이 높은 것으로 나타났다(159). 자영업의 단점은 고립과 부진한 기술 개발, 낮은 임금 수준, 그리고 업무와 관련된 보조 기기 비용을 전적으로 개인이 부담해야 된다는 점 등이다(171). 자영업에서 가장 눈에 띄는 어려운 점은 자본금이든, 장비 혹은 훈련 비용이든 사업을 시작할 때 필요한 초기 비용 부분이다. 유럽에서 자영업을 선택한 장애인을 대상으로 한 광범위한 연구에 따르면, 일반적으로 민간 대출업자가 장애인을 투자 위험이 높은 대상으로 여기기 때문에 장애인은 비용적인 부분을 주로 가족에게 의지하고 있는 것으로 나타났다. 영국과 같은 국가에서는, 장애인이 세금 공제와 기타 장애 관련 수입 지원의 혜택을 받을 수 있고, 때때로 고용 기관을 통해 중소기업 자금 대출을 이용할 수도 있다(159). 그러나 보조금, 대출, 세액 공제의 형태로 비교적 넉넉한 재정 지원을 하는 캐나다와 영국에서도, 관련 정보에 대한 접근성이 부족해 이런 혜택의 이용률은 낮은 편이다(159, 175). 소규모 회사를 설립하기 위해 펀딩에 접근하는 것이 저소득 국가에 거주하는 척수장애인에게는 상당한 어려운 것으로 입증되었다. 이런 국가에서는, 소액 대출 제도가 장애인이 생계를 유지할 수 있도록 해 주는 수단이 되어 왔다. 소액 대출은 사업 대출을 포함해 은행권에 접근할 여력이 되지 않는 개인과 소상공인에게 기본 금융 서비스를 제공하는 것을 일컫는다. 아프리카와 아시아에서 진행한 문헌과 사례의 광범위한 검토를 통해, 장애인은 기존 소액 대출 프로그램에서는 동등한 혜택을 받지 못한 것으로 나타났다(176, 177). 2006년 핸디캡 인터내셔널(Handicap International)은 아프리카와 아시아의 빈곤 국가를 대상으로 소액 대출 및 대부 단체 접근성에 대한 철저한 연구를 진행했다. 연구 결과에 따르면, 이런 펀딩 단체의 고객 중 0.5%만이 장애인이었다(178). 니카라과의 장애인 협회(Asociación de Discapacitados de la Resistencia Nicaragüense), 아프가니스탄의 적십자 국제 위원회, 기타 다른 지역의 성공적인 사례를 보면, 이런 복잡한 문제를 해결하기 위해서는 강력한 역량 구축의 힘을 가진 NGO의 참여가 필요하다고, 해당 연구는 주장하고 있다. 다른 연구 에서는, 지역 사회 기반의 저축과 대부 조직이 장애인의 취업률을 높이는 잠재력이 있으며, 장애인 단체가 이러한 지역 금융 조직과의 협력을 통해 중요한 역할을 수행해야 한다고 주장하고 있다(177).
▶ 사회적 보호 장애는 전 세계의 극심한 빈곤과 밀접히 관련되어 있으며, 척수손상도 예외가 아니다. 호주 연구에 따르면, 일자리가 있는 사지 마비 장애인의 평균 연 수입은 전체 국민의 평균 연 수입의 약 절반 정도인 것으로 추정된다(179). 말레이시아 연구에서는, 직장이 있는 척수장애인 50%의 손상 이후 수입은 손상 이전의 수입과 비교해 상당히 낮은 것으로 나타났다(105). 인도 남부에서는 대부분의
240 척수 손상의 국제적 관점
척수장애 환자들이 빈곤선 이하의 삶을 살고 있는 것으로 드러났으며 (109, 135), 네팔에서는 연구에 참여한 절반 이하의 사람들이 재활 시설에서 퇴원 이후 수년 동안 전혀 수입이 없었다고 응답했다 (180). 짐바브웨 척수장애인의 3분의 1 정도는 전혀 수입이 없어서 가족과 친구들의 경제적 지원에 의지하는 것으로 연구에서 나타났다(108). 가나에서는, 이동에 제약이 있는 사람들은 고용 기회와 사회적 서비스가 부족하기 때문에 불법적인 구걸에 의지해 살아가고 있는 것으로 보고되었다(181). 이런 지역적인 연구 이외에, 경제적으로 자립한 척수장애인의 숫자에 대해서는 알려진 바가 매우 미미하다. 많은 장애인들이 사회 보장 프로그램, 장애인 연금, 소득 지원, 가족 지원, 현물 보조 등에 의존할 가능성이 높다. 사회 보장망은 경제 침체기에 매우 취약하며, 전 세계 대부분의 빈곤한 지역 에서 부족한 상황이다. 인도를 포함한 몇몇 국가에서는, 척수손상을 입은 공무원이나 군인들에게만 제공되는 사회 보장 서비스가 있다(182, 183). 대부분의 고소득 국가와 브라질, 나미비아, 남아프리카공화국같이 중간 소득층이 많아지고 있는 국가 에서는 두 가지 형태의 사회 보호 시스템을 가지고 있다. 하나는 정규직 직업을 찾을 때까지 수입을 보전해 주기 위한 개인 자산 평가에 근거한 일시적인 지원이다(예: 실업 보험, 임시 장애 수당). 다른 하나는 개인이 더 이상 고용 활동이 불가능한 정도의 영구적 장애를 입은 경우, 사회적 지원 혹은 복지 형태의 영구적 지원이다. 예를 들어, 네덜란드에서는 실업 보험이 의무 사항이다. 그 결과, 97%의 척수장애인과 손상 이후 직업을 구하지 못한 사람들이 재정 지원을 받고 있으며, 직업이 있는 장애인의 대다수는 척수손상 이전 월급의 70%를 기준으로 추가적인 사회 보장 혜택을 받을 수 있는 자격을 가지고 있다(127). 캐나다에서는 이와는 반대로 장기 장애 보험(DI) 제도를 통해, 일자리를 찾을 때까지 손상 이후 2년 동안 월급의 65-70%를 지급하고 있다. 만약 직장으로 복귀할 가능성이 없는 경우에는, 이 비용 지원은 기간을 연장해 계속적으로 지원되며, 나중에는 다른 형태의 사회적 지원으로 대체된다(152). 사회 보장 계획의 이면에는 ‘복지 혜택의 덫(benefit trap)’이 있을 수도 있다. 이 용어는 생활 보조금과 다른 보장 프로그램이 자산 평가에 근거해 진행되기 때문에(혹은 일단 정규 직장을 갖게 되면 지원이 중단되기 때문에), 보조 기기 비용을 포함해 지속적인 건강과 재활 관련 요구가 있는 척수장애인이 취업을 꺼리는 상황을 일컫는다. 이와 같은 상황이 발생하는 이유는, 일을 통해 얻는 수입이 척수손상 으로 인해 발생하는 보건 의료 및 기타 비용 지출을 감당하기에도 적고, 일시적인 소득 대체 프로 그램을 통해 장애인에게 지급되는 비용보다 적기 때문이다(184). 이 문제가 얼마나 광범위한지를 보여 주는 상충되는 사례가 있다. 미국에서 진행된 대규모 연구에 따르면, 직업이 없는 척수장애인에 대한 높은 수준의 장애 혜택은 손상 이후에 낮은 취업 시도와도 상당한 관련이 있다는 점이 드러났다 (129). 장애 보험 수혜자들은 고용 시장에서 터무니없이 높은 임금을 주장하며 나타나지를 않는다. 수혜자들 중 절반은 장애 보험 수급 이전에 받았던 마지막 월급의 80% 정도를 원한다. 또한 장기
8. 교육과 고용 241
장애 보험 수혜자의 약 7% 정도만이 만약 구인 활동을 통해 손상 이전 마지막 월급의 평균 80% 정도의 월급을 받을 수 있다면 직장으로 복귀할 가능성이 있다고 추정된다(185). 비용이 들겠지만, 복지 혜택의 덫에 대한 가장 직접적인 해결책은 개인 자산 평가 방법을 수정해서 높은 보건 의료와 손상 관리 비용이 필요한 개인에게는 취업 이후에도 수당의 일정 부분을 계속 제공해 주는 것이다. 이런 해결책에서 예상할 수 있는 어려운 점은 실업이 만연한 상황에서는 장애인들이 보건 의료 비용을 확보하기 위해 장애 지원 제도를 활용하기 위해 노력할 것이라는 점이다. OECD는 장애 혜택은 개인별 요구와 능력을 고려하고, 직장 복귀를 우선순위로 두고 설계한 커다란 ‘참여 촉진 패키지’의 한 부분에 지나지 않는다고 주장하며, 척수장애인이 받는 상당한 혜택에 많은 변화를 줄 것을 제안했다(102, 186). 이 패키지에는 재활과 직업 훈련, 구인 지원, 직장 복귀 준비를 위한 현금 혹은 현물 수당 등이 포함된다. 또한 장애인 근로자를 고용한 경우 상당한 인센티브를 받거나 혹은 작업장 편의 시설 추가 설치를 이유로 장애인 근로자를 해고한 경우 처벌을 받게 되는 고용주들도 직접적으로 참여시켜야 한다. 이런 방식으로 장애 수당은 완전 고용을 향한 하나의 단계로써 적용 할 수 있는 일시적인 지급 장려 수단이 되어야 한다. 장애와 고용 정책에 대해 OECD가 제안한 변화는 다른 장애 유형보다는 척수장애인에게 아마도 더 유리할 수 있다. 전형적으로 외상성 척수장애인은 손상을 당하기 전에 사회생활을 위해 준비하 거나 혹은 막 시작했던 젊은이들이다. 업무 관련 서비스의 임시적 패키지의 하나로서의 직업 재활은 OECD의 제안을 보완할 수 있다.
결론과 제안
교육은 취업과 사회의 완전한 구성원이 되기 위해 필수적인 요소이지만, 학교로 돌아가 주류 교육에 완전히 참여하기를 원하는 이분척추증 아동이나 젊은 척수장애인은 물리적, 태도적 장애물로 인해 어려움을 겪을 수 있다. 이런 장애물을 제거하고 편의 시설과 지원 서비스를 제공하기 위한 제도적인, 그리고 학교 차원의 변화가 요구된다. 이를 통해서 모든 척수장애 아동, 청년, 성인들이 교육의 혜택을 받을 수 있다. 새로운 직업을 위해 재교육을 받기를 원하는 장년층 성인장애인들 또한 훈련 기관, 직업 혹은 기술 학교, 대학의 맞춤형 지원과 편의 제공이 필요하다. 자격을 갖출 경우, 척수장애인도 여러 직업의 요구 조건에 맞는 일을 할 수 있고, 생산적인 활동을 할 수 있다. 그러나 구직과 고용 유지에 있어서 종종 어려움에 직면하는 경우가 있다. 예를 들어,
242 척수 손상의 국제적 관점
관련된 교육, 훈련, 직업 재활 및 일자리 배치 서비스에 대한 접근 부족, 자영업을 위한 재정 지원 접근 부족, 사회 보호 수당 계획의 구조적 문제로 발생한 불이익과 집행 지연, 작업장 편의 시설과 보조 기기 기술의 부재, 척수장애인이 할 수 있는 일과 없는 일에 대한 고용주와 직장 동료들의 편견 등이 이에 해당된다. 가족, 학교 직원, 교사, 직업 재활 및 기타 전문가부터 정부, 고용주, 척수장애인 단체까지 많은 개인과 그룹들은 교육과 고용의 완전한 참여를 가로막는 장벽을 극복하기 위해 함께 참여하고 협력 해야 한다. 이러한 이해 당사자가 함께 고민해야 할 중요한 영역을 다음의 제안 사항으로 요약해 제시한다.
▶ 교육 참여의 증진 • 척수장애 학생들이 다른 사람과 동등하게 자신들의 요구와 능력에 적합한 어느 수준의 학교에서든 입학과 재학을 할 수 있도록 법과 정책을 통해 보장한다. • 잠재적인 척수장애 지원자가 배제되지 않는 대학 입학 전형을 보장하고, 대학 당국은 접근 가능한 환경을 구축하기 위한 계획을 마련해야 한다. • 교육과 재활 관계자들이 힘을 모아 손상 이후 학교로 돌아갈 수 있는 계획을 수립한다. • 아동의 요구에 따라서, 건강, 재활, 지원 서비스를 이용할 수 있도록 보장한다. • 장애 아동의 요구에 부합할 수 있도록 교사에 대한 교육을 실시한다. • 가능하다면, 아동의 학교 복귀와 상급 교육 기관으로의 전환(진학)을 위해 동료 멘토링 프로그램을 제공한다. • 부모와 장애 아동을 의사 결정 과정에 포함시킨다. • 척수장애 단체를 활용해 척수손상과 관련된 문제에 대해 정보를 제공하고 인식을 개선시킨다.
▶ 고용과 경제적 자립 보장 • 효과적인 차별 금지 법안을 제정, 집행, 공표하여, 고용주들이 차별을 금지하고, 정당한 편의 제공에 대한 자신들의 책임을 인식하도록 만든다. • 척수장애인의 취업 준비를 돕고, 이들이 사회 심리적 근심을 완화시키기 위해 직업 재활을 받을 수 있도록 보장한다. • 자영업을 원하는 척수장애인을 위해 소액 대출과 기타 금융 지원에 대한 접근을 장려한다. • 상황에 따라서, 척수손상으로 영향을 받은 개인과 가족을 지원하는 사회적 보호 프로그램을 제공하고, 이 프로그램이 업무에 불이익으로 작용하지 않도록 한다. • 척수장애인과 기타 다른 장애인의 고용 경험에 관한 통계를 수집한다.
▶ 참고 문헌 1. United Nations. Convention on the Rights of Persons with Disabilities. Geneva, United Nations, 2006 (http://www2.ohchr.org/english/law/disabilities-convention.htm, accessed 9 May 2012). 2. WHO. World report on disability. Geneva, World Health Organization, 2011. 3. UNESCO. Strong foundations: early childhood care and education. Education for All Global Monitoring Report, 2007. Paris, United Nations Educational, Scientific and Cultural Organization, 2006.
8. 교육과 고용 243
4. Kochung JE. Role of higher education in promoting inclusive education: Kenyan perspective. Journal of Emerging Trends in Educational Research and Policy Studies, 2011, 2:144-149. 5. Filmer D. Disability, poverty, and schooling in developing countries: results from 14 household surveys. The World Bank Economic Review, 2008, 22:141-163. doi: http://dx.doi.org/10.1093/wber/lhm021 6. UNESCO. Policy guidelines on inclusion in education. Paris, United Nations Educational, Scientific and Cultural Organization, 2009. 7. Loeb ME, Eide AH, eds. Living conditions among people with activity limitations in Malawi: a national representative study. Oslo, SINTEF, 2004. 8. Eide AH et al. Living conditions among people with disabilities in Zimbabwe: a representative, regional study. Oslo, SINTEF, 2003. 9. Eide AH, van Rooy G, Loeb ME. Living conditions among people with disabilities in Namibia: a national, representative study. Oslo, SINTEF, 2003. 10. Eide AH, Loeb ME, eds. Living conditions among people with activity limitations in Zambia. Oslo, SINTEF, 2006. 11. VanLeit B, Channa S, Rithy B. Children with disabilities in rural Cambodia. An examination of functional status and implications for service delivery. Asia Pacific Disability Rehabilitation Journal, 2007, 18. 12. Rieser R. Implementing inclusive education: A Commonwealth guide to implementing Article 24 of the UN Convention on the Rights of People with Disabilities. London, Commonwealth Secretariat, 2012. 13. Zhang E. The protection of rights of people with disabilities in China. Asia Pacific Disability
Rehabilitation Journal, 2007, 18:49-89. 14. Croft A. Including disabled children in learning. Challenges in developing countries. Create Pathways to Access, Research Monograph, No. 26. Brighton, University of Sussex, 2010 (http://www.create-rpc.org/ pdf_documents/PTA36.pdf, accessed 20 April 2012). 15. McGinnis K, Lunn M. School re-entry after pediatric spinal cord injury. SCI Nursing, 2004, 21:222-223. PMID:15794424 16. DeVivo MJ, Chen Y. Trends in new injuries, prevalent cases, and aging with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:332-338. doi: http://dx.doi.org/10.1016/ j.apmr.2010.08.031 17. Barf HA et al. Educational career and predictors of type of education in young adults with spina bifida. International Journal of Rehabilitation Research, 2004, 27:45-52. doi: http://dx.doi.org/10.1097/ 00004356-200403000-00006 18. DeVivo MJ. Epidemiology of traumatic spinal cord injury: trends and future implications. Spinal Cord, 2012, 50:365-372. doi: http://dx.doi.org/10.1038/sc.2011.178 19. Hagen EM et al. Traumatic spinal cord injury and concomitant traumatic brain injury: a cohort study.
Acta Neurologica Scandinavica, Supplementum, 2010, 190:51-57. doi: http://dx.doi.org/10.1111/ j.1600-0404.2010.01376.x
244 척수 손상의 국제적 관점
20. Burmeister R et al. Attention problems and executive functions in children with spina bifida and hydrocephalus. Child Neuropsychology, 2005, 11:265-283. doi: http://dx.doi.org/10.1080/092970490911324 21. Fletcher JM et al. Spinal lesion level in spina bifida: a source of neural and cognitive heterogeneity. Journal of Neurosurgery Pediatrics 3, 2005, 102:268–279. 22. Wasson CM, Bannister CM, Ward GS. Factors affecting the school placement of children with spina bifida. European Journal of Pediatric Surgery, 1992, 2 Suppl. 1:29-34. doi: http://dx.doi.org/10.1055/ s-2008-1063496 23. Bellin MH et al. Correlates of depressive and anxiety symptoms in young adults with spina bifida.
Journal of Pediatric Psychology, 2010, 35:778-789. Epub: 30 October 2009 doi: http://dx.doi.org/10.1093/ jpepsy/jsp094 24. Bowman RM et al. Spina bifida outcome: a 25-year prospective. Pediatric Neurosurgery, 2001, 34:114-120. doi: http://dx.doi.org/10.1159/000056005 25. Sawin KJ, Betz CL, Linroth R. Gaps and opportunities: an agenda for further research, services, and program development in spina bifida. Pediatric Clinics of North America, 2010, 57:1041-1057. doi: http://dx.doi.org/10.1016/j.pcl.2010.07.020 26. Graham P, Weingarden S, Murphy P. School reintegration: a rehabilitation goal for spinal cord injured adolescents. Rehabilitation Nursing, 1991, 16:122-127. doi: http://dx.doi.org/10.1002/ j.2048-7940.1991.tb01196.x 27. Mulcahey MJ. Returning to school after a spinal cord injury: perspectives from four adolescents. The
American Journal of Occupational Therapy, 1992, 46:305-312. doi: http://dx.doi.org/10.5014/ajot.46.4.305 28. Castle R. An investigation into the employment and occupation of patients with a spinal cord injury. Paraplegia, 1994, 32:182-187. doi: http://dx.doi.org/10.1038/sc.1994.33 29. Dudgeon BJ, Massagli TL, Ross BW. Educational participation of children with spinal cord injury. The American Journal of Occupational Therapy, 1997, 51:553-561. doi: http://dx.doi.org/10.5014/ ajot.51.7.553 30. Knight A et al. The school lives of children and young people with a spinal cord injury. Report to the Back-Up Team. London, Thomas Coram Research Unit, University of London, 2008. 31. Newman L, Malouf D. The post-high school outcomes of youth with disabilities up to 4 years after
high school. Menlo Park, CA, SRI International, 2009. 32. Massagli TL, Dudgeon BJ, Ross BW. Educational performance and vocational participation after spinal cord injury in childhood. Archives of Physical Medicine and Rehabilitation, 1996, 77:995-999. doi: http://dx.doi.org/10.1016/S0003-9993(96)90058-1 33. OECD. Inclusion of students with disabilities in tertiary education and employment, education and training policy. Paris, Organisation for Economic Co-operation and Development, 2011. 34. Momin AKM. Impact of services for people with spinal cord lesion on economic participation. Asia Pacific Disability Rehabilitation Journal, 2004, 15:53-67. 35. OECD. Students with disabilities, learning difficulties and disadvantages: policies, statistics and indicators. Paris, Organisation for Economic Co-operation and Development, 2007.
8. 교육과 고용 245
36. Bines H, Lei P, editors. Education’s missing millions: including disabled children in education through EFA FTI processes and national sector plans. Milton Keynes, World Vision UK, 2007 (http://www.worldvision.org.uk/upload/pdf/Education%27s_Missing_Millions_-_Main_Report.pdf, accessed 16 May 2012). 37. UNESCO. Guidelines for inclusion: Ensuring access to Education for All. Paris, United Nations Educational, Scientific and Cultural Organization, 2005. 38. Dube AK. The role and effectiveness of disability legislation in South Africa. London, Disability Knowledge and Research Programme, 2005 (http://www.dfid.gov.uk/r4d/PDF/Outputs/Disability/ PolicyProject_legislation_sa.pdf, accessed 20 April 2012). 39. Engelbrecht P, Oswald M, Forlin C. Promoting the implementation of inclusive education in primary schools in South Africa. British Journal of Special Education, 2006, 33:121-129. doi: http://dx.doi.org/ 10.1111/j.1467-8578.2006.00427.x 40. Liptak GS et al. Youth with spina bifida and transitions. Health and social participation in a nationally represented sample. The Journal of Pediatrics, 2010, 157:584–588.e1. 41. Holmbeck GN et al. Family perspective: how this product can inform and empower families of youth with spina bifida. Pediatric Clinics of North America, 2010, 57:919-934. doi: http://dx.doi.org/10.1016/ j.pcl.2010.07.012 42. O’Mahar K et al. A camp-based intervention targeting independence among individuals with spina bifida. Journal of Pediatric Psychology, 2010, 35:848-856. doi: http://dx.doi.org/10.1093/jpepsy/jsp125 43. van Mechelen MC et al. Work participation among young adults with spina bifida in the Netherlands.
Developmental Medicine and Child Neurology, 2008, 50:772-777. doi: http://dx.doi.org/10.1111/ j.1469-8749.2008.03020.x 44. Zukerman JM. Adolescent predictors of emerging adulthood milestones in youth with spina bifida. Journal of Pediatric Psychology, 2011, 36:265-276. doi: http://dx.doi.org/10.1093/jpepsy/jsq075 PMID: 20855288 45. Miles M. Children with hydrocephalus and spina bifida in East Africa: can family and community resources improve the odds? Disability & Society, 2002, 17:643-658. doi: http://dx.doi.org/10.1080/ 0968759022000010425 46. Webster G, Kennedy P. Addressing children’s needs and evaluating rehabilitation outcome after spinal cord injury: the child needs assessment checklist and goal-planning program. The Journal of Spinal Cord Medicine, 2007, 30 Suppl. 1:S140-S145. PMID:17874699 47. Anderson CJ et al. Overview of adult outcomes in pediatric-onset spinal cord injuries: implications for transition to adulthood. The Journal of Spinal Cord Medicine, 2004, 27 Suppl. 1:S98-S106. PMID: 15503711 48. Anderson CJ, Vogel LC. Employment outcomes of adults who sustained spinal cord injuries as children or adolescents. Archives of Physical Medicine and Rehabilitation, 2002, 83:791-801. doi: http://dx.doi.org/10.1053/apmr.2002.32742 49. Vogel LC et al. Unique issues in pediatric spinal cord injury. Orthopedic Nursing, 2004, 23:300-308. doi: http://dx.doi.org/10.1097/00006416-200409000-00004
246 척수 손상의 국제적 관점
50. Jerlinder K, Danermark B, Gill P. Swedish primary-school teachers’ attitudes to inclusion – the case of PE and pupils with physical disabilities. European Journal of Special Needs Education, 2010, 25:45-57. doi: http://dx.doi.org/10.1080/08856250903450830 51. Asbjørnslett M, Hemmingsson H. Participation at school as experienced by teenagers with physical disabilities. Scandinavian Journal of Occupational Therapy, 2008, 15:153-161. doi: http://dx.doi.org/10.1080/ 11038120802022045 52. House LA et al. Rehabilitation and future participation of youth following spinal cord injury: caregiver perspectives. Spinal Cord, 2009, 47:882-886. doi: http://dx.doi.org/10.1038/sc.2009.64 53. Roessler RT, Hennessey ML, Rumrill PD. Strategies for improving career services for postsecondary students with disabilities: results of a focus group study of key stakeholders. Career Development for Exceptional Individuals, 2007, 30:158-170. doi: http://dx.doi.org/10.1177/08857288070300030501 54. Shem K et al. Return to work and school: a model mentoring program for youth and young adults with spinal cord injury. Spinal Cord, 2011, 49:544-548. doi: http://dx.doi.org/10.1038/sc.2010.166 55. Houchins DE. Post-secondary transitions assistive technology barriers and facilitators during secondary and post-secondary transitions. Career Development for Exceptional Individuals, 2001, 24:73-88. doi: http://dx.doi.org/10.1177/088572880102400106 56. National Center on Secondary Education and Transition (NCSET). Current challenges facing the future of secondary education and transition services for youth with disabilities in the United States. US Department of Education, Office of Special Education Program, Washington, DC, 2004. 57. Scarborough, J., Gilbride, D. Developing relationships with rehabilitation counselors to meet the transition needs of students with disabilities. Professional School Counseling. 2006 10: 25–33. 58. Dutta A, Schiro-Geist C, Kundu M. Coordination of postsecondary transition services for students with disabilities. Journal of Rehabilitation, 2009, 75:10-17. 59. Taylor M, Baskett M, Wren C. Managing the transition to university for disabled students. Education
+ Training, 2010, 52:165-175. 60. Lewin KM. Improving access, equity and transitions in education: creating a research agenda. Create Pathways to Access, Research Monograph, No. 1. Brighton, University of Sussex, 2007. 61. Vosloo S-M. The functioning of primary school learners with paraplegia/paraparesis in mainstream schools in the Western Cape, South Africa. An exploratory study. Disability and Rehabilitation, 2009, 31:23-31. doi: http://dx.doi.org/10.1080/09638280802280643 62. Ong LC, Lim YN, Sofiah A. Malaysian children with spina bifida: relationship between functional outcome and level of lesion. Singapore Medical Journal, 2002, 43:012−017. 63. Masangwa. Disabled children can and should go to school. The Africa Report, 2010 (http://theafricareport.com/ Blog/index.php?trackback/12, accessed 15.5.2012). 64. Losinsky LO et al. An investigation into the physical accessibility to wheelchair bound students of an Institution of Higher Education in South Africa. Disability and Rehabilitation, 2003, 25:305-308. doi: http://dx.doi. org/10.1080/0963828021000043743 PMID:12745953
8. 교육과 고용 247
65. Abend AC. Planning and designing for students with disabilities. National Clearinghouse for Educational Facilities, 2001 (http://www.ncef.org/pubs/accessibility.pdf, accessed 14 November 2012). 66. Pivik J, McComas J, Laflamme M. Barriers and facilitators to inclusive education. Exceptional Children, 2002, 69:97-107. 67. Monk J, Wee J. Factors shaping attitudes toward physical disability and availability of rehabilitation support services for disabled persons in rural Kenya. Asia Pacific Disability Rehabilitation Journal, 2008, 19:93-113. 68. OECD. Accessibility Programme and School Restoration in Lisbon. PEB Exchange Paris: Organisation for Economic Co-operation and Development, 2006. 69. Cook A et al. School-based use of a robotic arm system by children with disabilities. IEEE
Transactions on Neural Systems and Rehabilitation Engineering, 2005, 13:452-460. PMID:16425826 doi: http://dx.doi.org/10.1109/TNSRE.2005.856075 PMID:16425826 70. Pilot SCI. Making equipment decisions after spinal cord injury. A peer support discussion guide. Toronto, Toronto Rehabilitation Institute, 2003 (http://www.scipilot.com/_g/expe_g/PeerGuide.pdf, accessed 20 April 2012). 71. Hasselbring TS, Glaser CHW. Use of computer technology to help students with special needs. The Future of Children: Children and Computer Technology, 2000, 10:102-122. doi: http://dx.doi.org/10.2307/ 1602691 PMID:11255702 72. Kemp CE, Hourcade JJ, Parette HP. Building and initial information base. Assistive technology funding resources for schoolaged students with disabilities. Journal of Special Education Technology, 2000, 15:4. 73. Government of United Kingdom. Disabled students’ allowances. London, United Kingdom (http://www.gov.uk/disabledstudents-allowances-dsas, accessed 11 April 2013). 74. Disability Alliance. Disability Alliance Northern Ireland. London, United Kingdom. (http://www.nidirect.gov.uk/ disabilityalliance, accessed 11 April 2013). 75. Peters S. Inclusive education. An EFA strategy for all children. World Bank. Human Development Network. 2004 (http://siteresources.worldbank.org/EDUCATION/Resources/278200-1099079877269/547664-10990799 93288/InclusiveEdu_efa_strategy_for_children.pdf, accessed 11 July 2012). 76. Meijer C. Financing of special needs education. A seventeen country study of the relation between
financing of special needs education and integration Middelfart: Denmark: European Agency for Development in Special Needs Education, 1999. 77. Krause JS, Carter RE. Risk of mortality after spinal cord injury: relationship with social support, education, and income. Spinal Cord, 2009, 47:592-596. doi: http://dx.doi.org/10.1038/sc.2009.15 78. Whalley Hammel K. Experience of rehabilitation following spinal cord injury: a meta-synthesis of qualitative findings. Spinal Cord, 2007, 45:260-274. PMID:17310257 79. Back Up. Back Up Trust (http://www.backuptrust.org.uk/what-we-do/mentoring, accessed 5 May
248 척수 손상의 국제적 관점
2013). 80. Anderson CJ et al. Anxiety and depression in children and adolescents with spinal cord injuries.
Developmental Medicine and Child Neurology, 2009, 51:826-832. doi: http://dx.doi.org/10.1111/ j.1469-8749.2009.03268.x 81. Krause JS, Broderick LA. 25-year longitudinal study of the natural course of aging after spinal cord injury. Spinal Cord, 2005, 43:349-356. doi: http://dx.doi.org/10.1038/sj.sc.3101726 82. Nel N et al. A comparative perspective on teacher attitude-constructs that impact on inclusive education in South Africa and Sweden. South African Journal of Education, 2011, 31:74-90. 83. Huang HH, Diamond KE. Early childhood teachers’ ideas about including children with disabilities in programmes designed for typically developing children. International Journal of Disability Development and Education, 2009, 56:169-182. doi: http://dx.doi.org/10.1080/10349120902868632 84. Mulvihill BA, Cotton JN, Gyaben SL. Best practices for inclusive child and adolescent out-of-school care. A review of the literature. Family & Community Health, 2004, 27:52-64. 85. Mukhopadhay S, Molosiwa SM. Influence of an introductory special education course on attitude change of PGDE students of University of Botswana. Asia Pacific Disability Rehabilitation Journal, 2010, 21. 86. Wehbi S. The challenges of inclusive education in Lebanon. Disability & Society, 2006, 21:331-343. doi: http://dx.doi.org/10.1080/09687590600679980 87. UNESCO. Toolkit for creating inclusive learning-friendly environments. Paris, United Nations Educational, Scientific and Cultural Organization, 2009. 88. OECD. OECD toolkit on teaching for diversity.Paris, OECD, Centre for Educational Research and Innovation (www.oecd.org/edu/ted/toolkit, accessed 18 May 2012). 89. Sharma, U, Forlin, C, Loreman, T. Impact of training on pre-service teachers’ attitudes and concerns about inclusive education and sentiments about persons with disabilities. Disability & Society, 2010, 23:772–785. 90. Diaz-Greenberg R et al. What teachers need to know about the struggle for self-determination (conscientization) and self-regulation: adults with disabilities speak about their education experiences. Teaching and Teacher Education, 2000, 16:873-887. doi: http://dx.doi.org/10.1016/ S0742-051X(00)00032-9 91. Buckup S. The price of exclusion. The economic consequences of excluding people with disabilities
from the world of work. Employment Working Paper, No. 43. Geneva, International Labour Organization, 2009. 92. Krause JS et al. Employment after spinal cord injury: differences related to geographic region, gender and race. Archives of Physical Medicine and Rehabilitation, 1998, 79:615-624. doi: http://dx.doi.org/10.1016/S0003-9993(98)90033-8 93. Krause JS. Adjustment to life after spinal cord injury: a comparison among three participant groups based on employment status. Rehabilitation Counseling Bulletin, 1992, 35:218-229. 94. Crisp R. Vocational decision making by sixty spinal cord injury patients. Paraplegia, 1992, 30:420-424.
8. 교육과 고용 249
doi: http://dx.doi.org/10.1038/sc.1992.92 95. Chapin M, Kewman D. Factors affecting employment following spinal cord injury: a qualitative study.
Rehabilitation Psychology, 2001, 46:400-416. doi: http://dx.doi.org/10.1037/0090-5550.46.4.400 96. Ottomanelli L, Lind L. A review of critical factors related to employment following spinal cord injury: implications for research and vocational services. The Journal of Spinal Cord Medicine, 2009, 32:503-531. PMID:20025147 97. Krause JS, Saunders L, DeVivo MJ. Income and risk of mortality after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:339-345. doi: http://dx.doi.org/10.1016/j.apmr. 2010.09.032 98. Hess DW et al. Predictors for return to work after spinal cord injury: a 3-year multicenter analysis. Archives of Physical Medicine and Rehabilitation, 2000, 81:359-363. doi: http://dx.doi.org/10.1016/ S0003-9993(00)90084-4 99. Krause JS, Anson C. Adjustment after spinal cord injury: relationship to participation in employment of educational activities. Rehabilitation Counseling Bulletin, 1997, 40:202-214. 100. Meade MA et al. The influence of secondary conditions on job acquisition and retention in adults with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2011, 92:425-432. doi: http://dx.doi.org/10.1016/j.apmr.2010.10.041 101. Young AE, Murphy GC. Employment status after spinal cord injury (1992–2005): A review with implications for interpretation, evaluation, further research, and clinical practice. International
Journal of Rehabilitation Research, 2009, 32:1-11. doi: http://dx.doi.org/10.1097/MRR.0b013e32831c8b19 102. OECD. Transforming disability into ability. Policies to promote work and income security for disabled people. Paris, Organisation for Economic Co-operation and Development, 2003. 103. Lidal IB, Huynh TK, Biering-Sorensen F. Return to work following spinal cord injury: A review. Disability and Rehabilitation, 2007, 29:1341-1375. doi: http://dx.doi.org/10.1080/09638280701320839 PMID:17729082 104. Lidal IB et al. Employment of persons with spinal cord lesions injured more than 20 years ago.
Disability and Rehabilitation, 2009, 31:2174-2184. doi: http://dx.doi.org/10.3109/09638280902946952 105. Ramakrishnan K et al. Return to work after spinal cord injury in Malaysia. Spinal Cord, 2011, 49:812-816. doi: http://dx.doi.org/10.1038/sc.2010.186 106. Hansen CH, Mahmud I, Bhuiyan AJ. Vocational reintegration of people with spinal cord lesion in Bangladesh – an observational study based on a vocational training project at CRP. Asia Pacific Disability Rehabilitation Journal, 2007, 18:63-75. 107. Gupta N, Solomon J, Raja K. Employment after paraplegia in India: a postal survey. Spinal Cord, 2011, 49:806-811. doi: http://dx.doi.org/10.1038/sc.2011.1 108. Levy LF et al. Problems, struggles and some success with spinal cord injury in Zimbabwe. Spinal Cord, 1998, 36:213-218. doi: http://dx.doi.org/10.1038/sj.sc.3100574 109. Samuelkamaleshkumar S et al. Community reintegration in rehabilitated South Indian persons with spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2010, 91:1117-1121. doi:
250 척수 손상의 국제적 관점
http://dx.doi.org/10.1016/j.apmr.2010.04.005 110. Gerhardt CA et al. Educational and occupational outcomes among survivors of childhood cancer during the transition to emerging adulthood. Journal of Developmental and Behavioral Pediatrics, 2007, 28:448-455. doi: http://dx.doi.org/10.1097/DBP.0b013e31811ff8e1 111. Frieden L, Winnegar AJ. Opportunities for research to improve employment for people with spinal cord injuries. Spinal Cord, 2012, 50:379-381. doi: http://dx.doi.org/10.1038/sc.2012.38 112. Yasuda S et al. Return to work after spinal cord injury: a review of recent research.
NeuroRehabilitation, 2002, 17:177-186. PMID:12237497 113. Al-Khodairy AT, El Masry WS. Vocational rehabilitation and spinal cord injuries. In: Gobelet C, Franchignoni F, eds. Vocational rehabilitation. Collection de L’Academie Europeenne de Medecine de Readaptation. Paris, Springer-Verlag France, 2006, 165−184. doi: http://dx.doi.org/10.1007/ 2-287-29745-6_11 114. Anderson D et al. Determinants of return to work among spinal cord injury patients: a literature review. Journal of Vocational Rehabilitation, 2007, 27:57-68. 115. Noreau L et al. Work and employment. In: Eng JJ et al., eds. Spinal cord injury rehabilitation
evidence, Volume 3.0. Vancouver, Spinal Cord Injury Rehabilitation Evidence (SCIRE), 2010 (http://www.scireproject.com/sites/default/files/work_and_employment.pdf, accessed 12 May 2012). 116. Krause JS et al. Employment after spinal cord injury: an analysis of cases from the Model Spinal Cord Injury Systems. Archives of Physical Medicine and Rehabilitation, 1999, 80:1492-1500. doi: http://dx.doi.org/10.1016/S0003-9993(99)90263-0 117. Valtonen K et al. Work participation among persons with traumatic spinal cord injury and meningomyelocele. Journal of Rehabilitation Medicine, 2006, 38:192-200. doi: http://dx.doi.org/ 10.1080/16501970500522739 118. Marini I et al. Vocational rehabilitation service patterns related to successful competitive employment outcomes of persons with spinal cord injury. Journal of Vocational Rehabilitation, 2008, 28:1-13. 119. Krause JS et al. Prediction of postinjury employment and percentage of time worked after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2012, 93:373-375. doi: http://dx.doi.org/10.1016/j.apmr.2011.09.006 120. Phillips VL, Hunsaker AE, Florence CS. Return to work and productive activities following a spinal cord injury: the role of income and insurance. Spinal Cord, 2012, 50:623–626 (E-pub ahead of print). doi: http://dx.doi.org/10.1038/sc.2012.22 121. Krause JS, Terza JV, Dismuke C. Earnings among people with spinal cord injury. Archives of
Physical
Medicine
and
Rehabilitation,
2008,
89:1474-1481.
doi:
http://dx.doi.org/10.1016/
j.apmr.2007.12.040 122. Meade MA et al. Vocational rehabilitation services for individuals with spinal cord injury. Journal of Vocational Rehabilitation, 2006, 25:3-11. 123. Arango-Lasprilla JC et al. Race, ethnicity, and employment outcomes 1, 5, and 10 years after spinal
8. 교육과 고용 251
cord injury: a longitudinal analysis. Journal of Physical Medicine & Rehabilitation: the journal of injury, function, and rehabilitation, 2010, 2:901–910. 124. Wehman P et al. Employment satisfaction of individuals with spinal cord injury. American Journal of Physical Medicine & Rehabilitation, 2000, 79:161-169. doi: http://dx.doi.org/10.1097/00002060200003000-00009 125. Krause JS. Aging and self-reported barriers to employment after spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 2001, 6:102-115. doi: http://dx.doi.org/10.1310/1WMH-35Q6-12B5-3WMN 126. Benavente A et al. Assessment of disability in spinal cord injury. Disability and Rehabilitation, 2003, 25:1065-1070. doi: http://dx.doi.org/10.1080/0963828031000137775 127. Tomassen PC, Post MW, van Asbeck FW. Return to work after spinal cord injury. Spinal Cord, 2000, 38:51-55. doi: http://dx.doi.org/10.1038/sj.sc.3100948 128. Krause JS. Years to employment after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 2003, 84:1282-1289. doi: http://dx.doi.org/10.1016/S0003-9993(03)00265-X 129. Pflaum C et al. Worklife after traumatic spinal cord injury. The Journal of Spinal Cord Medicine, 2006, 29:377-386. PMID:17044388 130. Krause JS, Coker JL. Aging after spinal cord injury: a 30-year longitudinal study. The Journal of Spinal Cord Medicine, 2006, 29:371-376. PMID:17044387 131. Kurtaran A et al. Occupation in spinal cord injury patients in Turkey. Spinal Cord, 2009, 47:709-712. doi: http://dx.doi.org/10.1038/sc.2009.79 132. Murphy GC et al. Predicting employment status at 2 years postdischarge from spinal cord injury rehabilitation. Rehabilitation Psychology, 2011, 56:251-256. doi: http://dx.doi.org/10.1037/a0024524 133. Cifu DX, Wehman P, McKinley WO. Determining impairment following spinal cord injury. Physical Medicine and Rehabilitation Clinics of North America, 2001, 12:603-612. PMID:11478191 134. Kennedy P et al. A multi-centre study of the community needs of people with spinal cord injuries: the first 18 months. Spinal Cord, 2010, 48:15-20. doi: http://dx.doi.org/10.1038/sc.2009.65 135. Sekaran P et al. Community reintegration of spinal cord-injured patients in rural south India. Spinal Cord, 2010, 48:628-632. doi: http://dx.doi.org/10.1038/sc.2010.6 136. Jang Y, Wang YH, Wang JD. Return to work after spinal cord injury in Taiwan: the contribution of functional independence. Archives of Physical Medicine and Rehabilitation, 2005, 86:681-686. doi: http://dx.doi.org/10.1016/j.apmr.2004.10.025 137. Escorpizo R et al. A conceptual definition of vocational rehabilitation based on the ICF: building a shared global model. Journal of Occupational http://dx.doi.org/10.1007/s10926-011-9292-6
Rehabilitation, 2011, 21:126-133. doi:
138. Gard G, Soderberg S. How can a work rehabilitation process be improved? A qualitative study from the perspective of social insurance officers. Disability and Rehabilitation, 2004, 26:299-305. doi: http://dx.doi.org/10.1080/09638280310001647624 139. DeSouza M et al. The Papworth early rehabilitation programme: vocational outcomes. Disability and Rehabilitation, 2007, 29:671-677. doi: http://dx.doi.org/10.1080/09638280600926538
252 척수 손상의 국제적 관점
140. Conroy L, McKenna K. Vocational outcome following spinal cord injury. Spinal Cord, 1999, 37:624-633. doi: http://dx.doi.org/10.1038/sj.sc.3100904 141. Schonherr MC et al. Vocational perspectives after spinal cord injury. Clinical Rehabilitation, 2005, 19:200-208. doi: http://dx.doi.org/10.1191/0269215505cr845oa PMID:15759536 142. Marnetoft SU et al. Factors associated with successful vocational rehabilitation in a Swedish rural area. Journal of Rehabilitation Medicine, 2001, 33:71-78. doi: http://dx.doi.org/10.1080/165019701750098902 143. Targett P, Wehman P, Young C. Return to work for persons with spinal cord injury: designing work supports. NeuroRehabilitation, 2004, 19:131-139. PMID:15201472 144. Yeager P et al. Assistive technology and employment: experiences of Californians with disabilities. Work (Reading, Mass.), 2006, 27:333-344. PMID:17148870 145. Burns SM et al. Psychosocial predictors of employment status among men living with spinal cord injury. Rehabilitation Psychology, 2010, 55:81-90. doi: http://dx.doi.org/10.1037/a0018583 146. Krause JS, Broderick LA. Relationship of personality and locus of control with employment outcomes among participants with spinal cord injury. Rehabilitation Counseling Bulletin, 2006, 49:111-114. doi: http://dx.doi.org/10.1177/00343552060490020201 147. Chan SKK, Man DWK. Barriers to returning to work for people with spinal cord injuries: a focus group study. Work (Reading, Mass.), 2005, 25:325-332. PMID:16340109 148. Lin M-R et al. A prospective study of factors influencing return to work after traumatic spinal cord injury in Taiwan. Archives of Physical Medicine and Rehabilitation, 2009, 90:1716-1722. doi: http://dx.doi.org/10.1016/j.apmr.2009.04.006 PMID:19801061 149. Pearcey TE, Yoshida KK, Renwick RM. Personal relationships after a spinal cord injury.
International Journal of Rehabilitation Research, 2007, 30:209-219. doi: http://dx.doi.org/10.1097/ MRR.0b013e32829fa3c1 150. Mortenson WB, Noreau L, Miller WC. The relationship between and predictors of quality of life after spinal cord injury at 3 and 15 months after discharge. Spinal Cord, 2010, 48:73-79. doi: http://dx.doi.org/10.1038/sc.2009.92 151. Targett P et al. Functional vocational assessment for individuals with spinal cord injury. Journal of Vocational Rehabilitation, 2005, 22:149-161. 152. Jongbloed L et al. Employment after spinal cord injury: the impact of government policies in Canada. Work (Reading, Mass.), 2007, 29:145-154. PMID:17726290 153. Wehmeyer ML et al. The self-determined career development model: a pilot study. Journal of Vocational Rehabilitation, 2003, 19:79-87. 154. New Zealand Spinal Trust. Kaleidoscope (http://www.nzspinaltrust.org.nz/rehab.asp, accessed 11 April 2013). 155. Inge K et al. Supported employment and assistive technology for persons with spinal cord injury: three illustrations of successful work supports. Journal of Vocational Rehabilitation, 1998, 10:141-152. doi: http://dx.doi.org/10.1016/S1052-2263(98)00010-5 156. CRP-Bangladesh. Centre for the rehabilitation of the paralysed. (http://www.crp-bangladesh.
8. 교육과 고용 253
org/index.php?option=com_content&view=article&id=69&Itemid=60, accessed 11 April 2013). 157. Hagner D, Cooney B. Building employer capacity to support employees with severe disabilities in the workplace. Work (Reading, Mass.), 2003, 21:77-82. PMID:12897393 158. Gilbride D et al. Identification of the characteristic of work environments and employers open to hiring and accommodating people with disabilities. Rehabilitation Counseling Bulletin, 2003, 46:130-137. doi: http://dx.doi.org/10.1177/00343552030460030101 159. Boyland A, Burchardt T. Barriers to self-employment for disabled people. Report prepared for the Small Business Service. London, 2002 (http://www.bis.gov.uk/files/file38357.pdf, accessed 16 May 2012). 160. Barf HA et al. Restrictions in social participation in young adults with spina bifida. Disability and Rehabilitation, 2009, 31:921-927. doi: http://dx.doi.org/10.1080/09638280802358282 161. Ravaud JF, Madiot B, Ville I. Discrimination towards disabled people seeking employment. Social Science & Medicine, 1992, 35:951-958. doi: http://dx.doi.org/10.1016/0277-9536(92)90234-H 162. McMahon BT et al. Workplace discrimination and spinal cord injury: the national EEOC ADA research project. Journal of Vocational Rehabilitation, 2005, 23:155-162. 163. Hernandez B, Keys L, Balcazar F. Employer attitudes toward workers with disabilities and their ADA employment rights: a literature review. Journal of Rehabilitation, 2000, 66:4-16. 164. Gilbride D et al. Employers’ attitudes toward hiring persons with disabilities and vocational rehabilitation services. Journal of Rehabiltation, 2000, 66:17–23. 165. McNeal DR, Somerville NJ, Wilson DJ. Work problems and accommodations reported by persons who are postpolio or have a spinal cord injury. Assistive Technology, 1999, 11:137-157. doi: http://dx.doi.org/10.1080/10400435.1999.10131998 166. Sabata D et al. A retrospective analysis of recommendations for workplace accommodations for persons with mobility and sensory limitations. Assistive Technology, 2008, 20:28-35. doi: http://dx.doi.org/10.1080/10400435.2008.10131929 167. JAN. Workplace accommodations: low cost, high impact. Morgantown, WV, Job Accommodation Network, updated 2011, (http://AskJAN.org/media/LowCostHighImpact.doc, accessed 16 May 2012). 168. Somerville N, Wilson DJ, Bruyere SM. Employing and accommodating individuals with spinal cord injuries. Ithaca, NY, Cornel University, 2000 (http://digitalcommons.ilr.cornell.edu/cgi/viewcontent.cgi? article=1013&context=edicollect, accessed 16 May 2012). 169. McKinley W et al. Assistive technology and computer adaptations for individuals with spinal cord injury. NeuroRehabilitation, 2004, 19:141-146. PMID:15201473 170. Bricout JC. Using telework to enhance return to work outcomes for individuals with spinal cord injuries. NeuroRehabilitation, 2004, 19:147-159. PMID:15201474 171. Hedrick B et al. Employment issues and assistive technology use for persons with spinal cord injury. Journal of Rehabilitation Research and Development, 2006, 43:185-198. doi: http://dx.doi.org/ 10.1682/JRRD.2005.03.0062 172. Priebe MM et al. Spinal cord injury medicine. 6: Economic and societal issues in spinal cord injury.
254 척수 손상의 국제적 관점
Archives of Physical Medicine and Rehabilitation, 2007, 88 Suppl. 1:S84-S88. doi: http://dx.doi.org/ 10.1016/j.apmr.2006.12.005 173. Driscoll MP, Rodger SA, deJonge DM. Factors that prevent or assist the integration of assistive technology into the workplace for people with spinal cord injuries: perspectives of the users and their employers and co-workers. Journal of Vocational Rehabilitation, 2001, 16:53-66. 174. Allen K, Blascovich J. The value of service dogs for people with severe ambulatory disabilities. A randomized controlled trial. Journal of the American Medical Association, 1996, 275:1001-1006. doi: http://dx.doi.org/10.1001/jama.1996.03530370039028 175. Malacrida C. Income support policy in Canada and the UK: different, but much the same. Disability
& Society, 2010, 25:673- 686. doi: http://dx.doi.org/10.1080/09687599.2010.505739 176. Cramm JM, Finkenflugel H. Exclusion of disabled people from microcredit in Africa and Asia: a literature review. Asian Pacific Disability Rehabilitation Journal, 2008, 19:15-33. 177. de Klerk T. Funding for self-employment of people with disabilities. Grants, loans, revolving funds or linkage with microfinance programmes. Leprosy Review, 2008, 79:92-109. PMID:18540240 178. Handicap International. Good practices for the economic inclusion of people with disabilities in
developing countries. Funding mechanisms for self-employment. Handicap International, 2006 (http://www.handicap-international.org.uk/Resources, accessed 11 April 2013). 179. Rowell D, Connelly LB. Personal assistance, income and employment: the spinal injuries survey instrument (SISI) and its application in a sample of people with quadriplegia. Spinal Cord, 2008, 46:417-424. doi: http://dx.doi.org/10.1038/sj.sc.3102157 180. Scovil CY et al. Follow-up study of spinal cord injured patients after discharge from inpatient rehabilitation in Nepal in 2007. Spinal Cord, 2012, 50:232-237. doi: http://dx.doi.org/10.1038/ sc.2011.119 181. Kassah AK. Begging as work: a study of people with mobility difficulties in Accra, Ghana. Disability
& Society, 2008, 23:163-170. doi: http://dx.doi.org/10.1080/09687590701841208 182. Marriott A, Gooding K. Social assistance and disability in developing countries. Haywards Heath, Sightsavers International, 2007. 183. Singh R, Dhankar SS, Rohilla R. Quality of life of people with spinal cord injury in Northern India.
International Journal of Rehabilitation Research, 2008, 31:247-251. doi: http://dx.doi.org/10.1097/ MRR.0b013e3282fb7d25 184. Atwell S, Hudson LM. Social security legislation creates Ticket to Work and Work Incentives Improvement Act. Topics in Spinal Cord Injury Rehabilitation, 2004, 9:26-32. doi: http://dx.doi.org/ 10.1310/LU8A-C1PL-URT1-K0N2 185. Mitra S. Disability and social safety nets in developing countries. International Journal of Disability Studies, 2006, 2:43-88. 186. OECD. Sickness, disability and work: breaking the barriers. A synthesis of findings across OECD countries. Paris, Organisation for Economic Co-operation and Development, 2010.
8. 교육과 고용 255
The way forward: recommendations
9. 제안: 미래를 향하여
9 제안: 미래를 향하여 척수손상은 의학적으로 복잡하고 삶을 힘들게 만드는 요소이다. 따라서 척수손상은 개인과 사회의 적잖은 비용 부담을 초래하게 된다. 척수장애인은 의존적인 상황에 놓이고, 학교에서 소외당하며, 취업의 가능성도 낮다. 더욱 심각한 것은, 척수장애인은 조기 사망의 위험에 취약하다는 점이다. 척수손상은 공공 의료와 인권적 측면 모두에서 어려운 과제이다. 그러나 이 보고서에 기술된 것처럼, 인권 정책적 대응을 통해 전 세계 어디에서나 척수장애인은 살 수 있고, 성공할 수 있고, 사회에 기여할 수 있다. 척수장애인은 장애인으로서 모든 다른 장애인들과 마찬가지로 동등한 인권을 향유하고 존중받을 권리가 있다. 일단 척수장애인에게 시급한 의료적 요구가 충족되면, 사회적· 환경적 장애물이 척수장애인의 통합과 성공적인 기능 발휘에 있어 주요한 장벽으로 남게 된다. 다른 장애인들과 더불어 척수장애인의 건강 서비스, 교육, 교통, 고용에 대한 접근과 이용이 보장되어야 하며, 이에 따라 삶의 성공과 실패라는 전혀 다른 결과를 만들어 낼 수 있다. 척수손상이 삶을 변화시킬 가능성이 있지만, 비극이나 삶의 짐이 될 이유는 없다.
중요한 결론
1. 척수손상은 공공 건강의 중대한 문제이다. • 외상성, 비외상성 척수손상의 전 세계 유병률은 인구 백만 명당 40-80명 정도로 추정된다. 2012년 세계 인구 추정치를 기반으로 하면, 이는 매년 25만 명에서 50만 명 정도가 척수손상을 당한다는 의미이다(1). 외상성 척수손상(TSCI) 유병률의 국가별 연구 자료를 기준으로 보면, 백만 명당 13명에서 53명 수준으로 보고되고 있다. 역사적으로는 척수손상의 90%가 외상성 요인에서 기인했으나, 최근 연구 데이터 대부분 에서 비외상성 척수손상(NTSCI)이 조금씩 늘어 나는 추세를 보이고 있다. 확인된 자료에 따르면 비외상성 척수손상의 유병률은 백만 명당 26명이다. • 척수손상의 발병률에 대해 확인할 수 있는 세계적인 추정 자료가 존재하지 않는다. 척수손상 유병률과 발생률에 관한 데이터는 내용이 적절하지 못하고 일관성도 결여되어 있다. 심지어 선진국에서도 사례 확인과 모델링 방법에서의 차이뿐만 아니라 역학상의 실질적 차이로 인해 수치가 매우 다양하게 나타나고 있다. 활용 가능한 데이터 확인이 가능한 국가의 경우에, 비외상성 척수손상 발생률은 핀란드는 백만 명당 280명 (2), 호주 681명 (3), 캐나다 1,298명 (4)에 이르기까지 다양한 수치를 보이고 있다.
성인과 아동에서 비외상성 척수손상의 발생률은 호주가 백만 명당 367명 (5), 캐나다는 1,227명 (4) 으로 나타났다. 캐나다에서 외상성과 비외상성 척수손상을 합산한 경우 종합적인 유병률은 2010년에 인구 백만 명당 2,525명인 것으로 밝혀졌다. 9. 제안: 미래를 향하여 259
• 어떤 국가에서는 척수손상 발생률이 증가하고 있다. 고소득 국가에서는 사지 마비 장애인의 기대 수명이 전체 인구 대비 대략 70%, 그리고 완전 하지마비 장애인은 88%까지 접근하면서, 손상 후 생존율이 증가함에 따라, 척수손상 발생률이 증가하는 경향이 나타나고 있다(6). 그러나 저·중소득 국가의 생존율은 여전히 낮아서 손상 후 1-2년 정도밖에 되지 않는 경우도 있고, 이는 척수손상의 낮은 발생률로 이어지고 있다(7). 지구촌 노령화로 인해 비외상성 척수손상의 비율이 증가할 가능성도 있으며, 전체 척수손상 비율 중에서 비외상성 척수손상이 차지하는 비율이 조금씩 늘어나는 경향을 보이고 있다. • 척수손상자의 대상이 바뀌고 있다. 척수손상 발생률은 젊은 층에서 가장 높고 노년층에서 낮은 편이다. 통계상 으로는 청년 남성이 압도적으로 많은 가운데, 점점 노년층과 여성을 포함하는 경향으로 바뀌고 있다. 전반적으로 손상 당시 연령은 높아지고 있다. • 교통사고, 추락, 폭력이 척수손상의 세 가지 주요 원인이다. 교통사고는 거의 발생 사례의 70%를 차지하며 아프리카 지역에서는 압도적인 손상 원인이며, 동남아시아 지역 40%, 서태평양 지역 55%에 걸쳐, 또한 기타 WHO 회원국에서도 척수손상의 눈에 띄는 기저 원인이다. 두 번째 주요 원인인 추락은 동남아시아 지역, 동부 지중해 지역에서 모든 사례의 40% 이상을 차지하고 있다. 아프리카 지역에서는 추락이 14%로 낮게 나타나고 있으며, 다른 WHO 회원 지역에서는 27-36% 정도를 보이고 있다. 척수손상의 원인으로는 대부분 총기로 인해 발생한 폭력과 자해를 포함한 폭행의 비율이 전 지역에 걸쳐 상당한 것으로 나타났다. 예를 들어, 아메리카, 아프리카, 동부 지중해 지역은 각각 14%, 12%, 11%를 보이고 있다. 전체 외상성 척수손상 사례 중 적어도 15%는 업무와 관련된 사고로 인해 발생하는 것으로 나타났다. 전 지역에 걸쳐 스포츠와 레저 활동은 외상성 척수손상의 모든 사례 중 10% 이하를 차지하고 있다. 자살 시도는 어떤 국가에서는 외상성 척수손상 사례 중 10% 이상의 원인으로 나타나고 있다. 결핵도 어떤 상황에서는 모든 비외상성 척수 손상 원인의 20%까지 차지하는 경향이 있다. • 척수장애인은 수명이 짧은 편이다. 연구에 따르면, 척수장애인은 비 척수장애인보다 2-5배 정도 조기에 사망 할 가능성이 높은 것으로 나타났다. 사지 마비 장애인이 하지마비 장애인보다 더 위험하며, 완전 손상이 불완전 손상보다 더 위험하다. 특히, 사망률은 손상 후 첫해에 가장 높으며 (8), 보건 의료 시스템, 특히 응급 치료 역량이 사망률에 상당한 영향을 미치는 것으로 나타났다. • 저소득 국가에서는 예방 가능한 이차적인 건강 상태(합병증)가 척수장애인의 사망에 주요 원인이 되고 있다
(9). 고소득 국가에서는, 척수장애인의 주요 사망 원인이 최근 수십 년간 변화하고 있다(10, 11). 즉, 비뇨 기과적 합병증은 감소하고 사망의 주요 원인이 호흡기계 문제, 특히 폐렴과 독감으로 옮겨 가고 있다. 심장 질환, 자살, 신경학적 문제 등이 사망과 관련된 다른 원인들이다.
2. 척수손상은 개인과 사회에 상당한 영향을 미친다. • 척수손상은 사람을 심리학적으로 취약하게 만든다. 비록 대다수의 사람들이 결국에는 척수손상에 잘 적응할 지라도, 20-30%의 척수장애인은 일반 국민보다 상당히 높은 수준의 우울증과 같은, 임상적으로 심각한 증상을 보이고 있다(12). • 척수장애인은 요로 감염증과 욕창같이 어느 정도 예방 가능한 합병증 때문에 건강을 유지하는 것이 쉽지
않다. • 척수손상은 가족의 붕괴와 관련이 있지만 또한 가족의 회복과도 관련이 있다. 손상 바로 직후에, 척수손상은 개인적 관계에 부정적인 영향을 줄 수 있고, 높은 이혼율과도 관련이 있다. 그러나 그 이후, 관계는 일반적 으로 개선된다. 이분척추증이나 외상성 척수손상 아동과 청년의 돌봄 제공자는 전형적인 고립감과 스트레스를 경험하곤 한다. • 학교 교육의 낮은 참여. 이분척추증이나 중도 척수장애 아동과 청년은 학교에 재학할 가능성이 낮고 고등 (3차) 교육에 참여할 가능성도 낮다. 이들은 상급 학교로의 전환 과정과 교육을 마친 후 취업하는 과정에서
260 척수 손상의 국제적 관점
장애물에 직면하곤 한다. • 척수손상은 낮은 경제 참여율과 관계가 있다. 세계적으로 척수장애인의 평균 취업률은 단지 37%에 지나지 않으며, 유럽에서만 51%로 높게 나타나고 있다. • 척수손상과 관련된 비용이 치매, 다발성 경화증, 뇌성 마비, 양극성 장애와 같이 비슷한 건강 상태의 사람과
비교했을 경우에 높은 편이다. 호주에서는 (재정적인 비용과 질병으로 인한 비용을 포함해) 평생 동안 들어 가는 비용이 하지마비 장애인의 경우 500만 호주 달러, 사지 마비 장애인의 경우 950만 호주 달러로 추정 되었다(14). 수입의 손실과 같은 간접 비용도 일반적으로 직접 비용을 초과하는 상황이다.
3. 서비스와 환경에 대한 장애물은 참여를 억제하고 삶의 질을 저하시킨다. • 부적절한 정책과 대책. 통합 교육, 접근 가능한 환경, 재활 같은 분야에서 여전히 적절한 정책과 서비스가 부족하다. 예를 들어, 저·중소득 국가에서는, 단지 5-15%의 사람들만이 자신에게 필요한 보조 기기를 가지고 있다(15). 네덜란드의 연구에서는, 척수장애인 응답자의 절반 이상이 휠체어 공급이 늦어져서 재활 병원에서 퇴원하는 시기가 지연됐다고 응답했다(16). • 펀딩의 부족. 예를 들어, 나이지리아의 한 연구에 따르면, 척수장애인 응답자의 40% 이상이 급성기 치료 비용이 자기 연 수입의 50% 이상을 넘었다고 응답한 것으로 나타났다(17). 마찬가지로 보조 기기도 비용이 가장 큰 장애물 중 하나이다. • 물리적 접근성과 관련된 장애물. 가정, 학교, 직장, 심지어 병원도 휠체어 사용자가 접근할 수 없는 경우가 있다. 접근 불가능한 교통은, 특히 농어촌 지역에 거주하는 경우에, 사회 참여를 가로막는 주요한 장애물 이다. 낮은 교통 접근성은 척수장애인이 병원과 요양원을 떠나 자립하는 것을 가로막는 원인이 된다. • 부정적인 태도. 예를 들어, 사지 마비가 죽음보다도 더 심한 운명이라거나, 휠체어를 탄 사람들은 일을 할 수 없고 친밀한 관계를 맺을 수 없다는 인식이 있을 수도 있다. 심지어 가족들도 부정적인 태도와 낮은 기대감을 보이는 경우가 있다. 종종, 편견은 지식의 부족과 직접적인 접촉의 부족에서 발생하게 된다. • 지식의 부족. 재활 업무 종사자들이 척수손상과 관련된 지식과 기술이 부족할 수도 있다. 예를 들어, 서비스 제공자의 전문성 부족은 척수장애인에 대한 적절한 보조 기기나 기술 제공을 방해할 수도 있다. 1차 치료 인력이 척수손상과 관련된 예방 가능한 합병증에 대해 모를 수도 있으며, 진단의 그림자화(diagnostic overshadowing)로 인해 척수장애인이 검진을 받지 못하거나 일반적인 의료적 요구에 대한 치료가 이루어지지 않을 수도 있다.
4. 척수손상은 예방 가능하다. • 교통사고와 관련된 사망과 장애는 도로 환경, 차량의 안전, 운전자의 행위 개선을 강조하는 안전 시스템 전략을 통해 줄일 수 있다 (18).
예를 들어, 안전 벨트 착용 의무 법안은 1970년에 세계 최초로 호주에서 도입되었고, 도로 설계와 차량 안전의 규제를 강화하려는 정부의 노력과 결합되어, 교통사고로 인한 연간 척수손상 발생률이 4% 감소했다(19). • 건강과 안전에 관한 작업장 규범을 통해 광산, 건축, 농업 현장에서 발생하는 손상을 줄일 수 있다. • 총과 도검류에 대한 접근을 제한하면 손상을 예방할 수 있고 사회적 비용을 줄일 수 있다. 금지 법안, 허가제 도입, 구매 최소 연령 설정, 구매자 이력 조회, 안전한 보관 장소 마련 등의 요구 사항을 포함한 접근 제한 조치의 실행을 고려해 볼 수 있다. 이러한 조치는 오스트리아, 브라질, 미국의 몇몇 주에서 성공적으로 진행 되었다.
9. 제안: 미래를 향하여 261
• 스포츠와 여가 활동으로 발생하는 손상은 설계 개선(예: 수영장, 놀이 시설, 스키 슬로프), 안전 정보(예: 낮은 물에서 다이빙의 위험성, 럭비 코치 교육) 제공, 스포츠 전반에 걸친 인식 개선을 통해 최소화할 수 있다. • 조기 발견과 치료는 척추 결핵 (20)뿐만 아니라 암에서 발생하는 척추 종양 유병률을 낮출 수 있다. • 영양 개선을 통해 이분척추증과 기타 신경관 결손의 발생률을 낮출 수 있다(21). 임신 전후 자발적인 경구 엽산 보충제(착상 전후 3개월) 복용은 이분척추증을 포함해 신경관 결손 신생아 출산 확률을 줄일 수 있는 것으로 나타났다(22, 23). 밀가루에 엽산을 첨가하는 정책을 시행한 국가들에서도 이분척추증 발생률이 줄어든 것으로 나타났다(24-27).
5. 척수손상 이후에도 생존 가능하다. • 적절한 입원 전 처치는 즉각적인 생존을 위해 중요하다. 척수손상으로 추정되는 경우 빠른 판단, 조기 진단, 적절한 관리가 필요하다. 외상성 척수손상의 경우 다음과 같은 입원 전 관리가 필요하다. 즉 바이털 사인과 의식 수준 측정을 포함한 신속한 진단, 생명 기능 안정화, 장기적으로 척추를 안정시키기 전까지 신경 기능 보존을 위해 척추 고정 및 출혈과 체온 및 통증 관리를 포함한 초기 손상 관리 실시, 환자를 관련 의료 시설로 신속하고 안전하게 이송하는 등의 입원 전 관리가 이에 포함된다. 그리고 환자가 적절한 응급, 구호 서비스를 받을 수 있는 급성기 치료 기관에 2시간 이내 도착하는 것이 가장 이상적이다. • 급성기 치료에서는 안정화가 최우선이다. 급성기 치료에는 수술적 처치와 보존적인 처치가 포함되지만, 척 수손상 및 동시에 나타나는 상태의 정확한 진단이 가장 중요하다. 손상 수준, 골절 형태, 불안정 정도, 신경 압박 여부, 다른 손상의 영향, 수술 시기, 전문적이고 적절한 내과 및 외과적 시설 같은 이용 가능한 자원, 시행하려는 처치의 예후와 효과 및 위험 요소 등을 포함한 가장 적절한 처치 방법을 결정하기 위해 많은 요소를 고려해야 한다. 모든 경우에, 척수장애인과 가족은 보존적 치료법과 수술적 치료법에 관한 사전 정보를 제공받은 후 선택할 수 있어야 한다. • 지속적인 보건 의료 관리가 생존과 양질의 삶을 위해 필요하다. 척수장애인은 요로관 감염과 욕창 같은 척수 손상 합병증을 예방해야 한다. 그리고 지속적인 보건 의료의 접근을 통해 오랫동안 완전한 삶을 건강하게 영위할 수 있다. 척수장애인은 호흡기 감염, 심혈관계 질환 위험성이 높은 만큼 종종 건강 상태가 취약해지는 상황에 놓이게 된다. 건강한 생활을 위한 조언에 따라 제공되는 카테터나 알맞은 방석 같은 제품과 더불어 기본 보건 의료에 대한 접근이 보장되지 못하면, 척수장애인은 조기에 사망할 가능성이 매우 높다.
6. 척수손상 이후에도 좋은 건강 상태를 유지하고 사회적 참여를 할 수 있다. 의료 서비스, 필요한 경우 활동 보조, 그리고 보조 기기의 지원을 받을 수 있는 척수장애인은 다시 공부할 수 있고, 자립 생활과 경제적 기여를 할 수 있고, 가족과 지역 사회에 참여할 수 있다. • 일단 몸 상태가 안정화되면, 기능을 극대화하고 가능하면 자립적인 생활을 최대한 보장하기 위해 관련된
급성기 및 급성기 이후 의학 치료와 재활 서비스에 대한 접근이 필요하다. 다양한 서비스 전달 모델이 있지만, 전문 센터를 이용하는 것이 비전문 센터의 서비스에 비해 가격도 저렴하고, 결과적으로 합병증에 적게 걸리고 재입원 사례도 낮은 것으로 나타났다. 척수장애인은 방광과 장 기능 조절 통제를 최우선 순위에 두어야 한다. 치료를 통해서는 하지와 상지의 기능을 향상시킬 수 있고 일상생활의 자립을 위한 기술을 배울 수 있다. 정신 건강 서비스와 조언도 중요하다. 우울증은 기능 향상을 더디게 만들고 합병증 발생을 높일 수 있다. 성과 생식 관련 건강 정보와 지원도 재활의 한 부분이 되어야 한다. • 적절한 보조 기구는 재활의 중요한 요소이다. 예를 들어, 척수장애인의 90% 이상은 어떠한 형태든지 휠체어가 필요하며, 개인이나 사용 환경에 맞는 적절한 휠체어를 사용해야 한다. 집 내외부 개조, 환경 통제, 그리고 때로는 사지 마비 장애인을 위한 통신 시스템을 포함한 다른 보조 기기 기술도 필요하다.
262 척수 손상의 국제적 관점
• 재교육과 재취업을 위한 서비스 제공이 반드시 필요하다. 자조 그룹, 접근 가능한 건물과 교통, 직업 훈련, 차별 금지 조치 등을 통해, 아동과 성인 장애인은 다시 공부할 수 있고, 자립적으로 살 수 있고, 경제적 기여를 하며, 가족과 지역 사회에 참여할 수 있다.
제안
1. 척수손상에 관한 보건 분야 대응 능력 향상 이를 위해서는, 보건과 재활 인력의 역량 구축, 예방과 조기 대응 서비스 강화, 적절한 의료 서비스와 재활 서비스의 이용과 접근 보장, 효율성 향상과 비용 절감을 위한 코디네이션 증진, 척수손상에 따른 엄청난 비용 지출을 막기 위한 의료 보험 적용 범위 확대, 적절한 보조 기기 기술과 의료 건강 제품 지원을 위한 전략 확인이 필요하다.
2. 척수장애인과 가족의 역량 강화 척수장애인은 정보가 필요하다. 그리고 이를 통해, 퇴원 이후 자신들의 건강 관리에 대한 책임을 스스로 질 수 있어야 한다. 재활 기간에는 가족도 정보를 함께 공유해야 한다. 가족 구성원과 다른 돌봄 제공자의 스트레스와 피로를 덜어 줄 지원도 필요하다. 고소득 국가에서는, 활동 보조인의 자립 생활 모델이 많은 지원을 필요로 하는 척수장애인의 역량을 강화할 수 있고, 비용 대비 효율적일 수 있다. 지역 사회 중심 재활(CBR)은 저소득 국가에서 중요하다. 모든 상황에서, 사회적 네트워크, 자조 그룹, 장애인 단체를 통해 장애인의 역량 강화와 참여를 촉진 할 수 있다. 신체적 활동과 스포츠에 대한 접근도 생리적, 심리적 웰빙에 기여할 수 있다.
3. 척수장애인에 대한 부정적인 태도에 적극적으로 대응 일반적인 장애 인식 개선 캠페인의 한 부분으로서 의사와 기타 의료 전문가의 학부 교육 과정을 포함해 다양한 인력 양성 과정에 개입, 편견을 없애기 위한 교실 활동에 참여, 언론을 통한 인식 개선 캠페인 등을 진행한다.
4. 건물, 교통, 정보 접근성 보장 이를 위해서는, 강제적인 국가 접근성 규범 마련, 건축가와 디자이너에게 유니버설 디자인 교육, 사회 주택에 대한 접근 개선, 급행 노선버스에 ‘유니버설 디자인’ 개념 적용 장려, 민간 택시의 접근성 보장 의무화, 접근성 문제 협의와 진행 과정 모니터링에 장애인 단체의 참여 등이 요구된다.
9. 제안: 미래를 향하여 263
5. 고용과 자영업 지원 직업 훈련, 유연한 근무 시간, 고용 지원, 생계에 초점을 맞춘 지역 사회 중심 재활 프로젝트 등은 척수장애인의 직장 복귀를 도울 수 있는 내용이다. 사회 보호 시스템은 대상자의 상태와 경제적 상황에 따라서 이용할 수 있어야 하지만, 직장으로의 복귀를 가로막는 요인으로 작용하지 않도록 해야 한다.
6. 적절한 연구와 데이터 수집 장려 척수손상에 관한 일상적 데이터 수집과 연구의 증가 및 향상을 위해 시급하게 요구되는 내용이 있다. 특히 표준 손상 외인에 관한 국제 분류(ICECI)의 용어를 활용한 척수손상에 관한 세분화된 통계는 발생 경향 분석 지원과 정책 대응 모니터링에 도움을 줄 수 있다. 삶의 주요한 영역에 걸친 인구 기반 종적 코호트 연구와 더불어 병원에서 직접 수집한 데이터를 종합한 척수손상 등록 시스템은 척수손상 데이터를 수집하기 위한 최선의 방법이다. 서비스 지원 측면에서는, 비용, 결과, 비용 대비 혜택에 대한 데이터가 필요하다.
다음 단계
제안 내용을 이행하기 위해서는, 보건, 교육, 사회 보호, 노동, 교통, 주택 등 다양한 분야와 정부, (장애인 단체를 포함한) 시민 사회 단체, 전문가, 민간 영역, 척수장애인, 가족 등 다양한 주체의 참여가 요구된다. 다양한 분야의 주체는 다학제적 팀워크를 통해 성공을 극대화하기 위해 함께 협력해야 한다. 핵심적인 것은 정부가 자국의 구체적인 상황에 맞는 행동을 취해야 한다는 점이다. 자원이 제한적인 국가에서는 행동의 우선순위를 정하고, 특히 기술적 지원과 역량 구축이 요구되는 행동은 장애와 개발에 관한 국제 협력의 프레임워크 안에 포함시켜 진행할 수도 있다.
▶ 정부가 할 수 있는 일은, • 근거에 기반하고 척수장애인을 존중하는 효과적인 1차 예방 프로그램에 투자 • 척수장애인을 위한 건강, 재활, 지원 서비스 제공 향상 • 중앙 척수손상 등록 시스템을 포함해 척수손상 데이터 수집을 위한 국가 표준 장려 • 과도한 손상 관련 비용 부담을 막기 위한 적절한 보험 계획의 보장 • 장애에 대한 부정적인 태도에 대처하기 위한 대중 인식 개선, 정보 제공, 교육 지원 • 주택, 교통, 공공건물을 포함한 적절한 접근성 표준 채택 • 척수장애 아동과 성인이 다른 사람과 동등하게 학교와 대학에 다닐 수 있는 교육 정책의 보장
264 척수 손상의 국제적 관점
• 척수장애인의 직업 준비를 돕기 위해 직업 재활에 대한 접근 보장 • 장애인 권리 협약에 부합하는 차별 금지 법안의 채택 등이 있다.
▶ 건강, 사회적 보호 전문가와 관련 단체가 할 수 있는 일은, • 척수장애인과 가족을 포함한 협업의 다학제적 접근 방법 구현과 더불어 적절한 척수손상 보건 의료 제공 • 척수장애인과 가족이 역량 강화를 통해 자신의 건강을 최대한 스스로 돌볼 수 있도록 장려 • 척수손상에 대한 인식 개선과 척수손상 연구 증진을 위해 의료 및 관련 건강 전문가 양성 교육 커리큘럼에 척수손상 과목 포함 • 다양한 맥락에서 기능을 회복할 수 있도록 가능한 한 최선의 재활 조치를 결정하기 위한 연구 실시 등이 있다.
▶ 장애인 단체와 비정부 단체가 할 수 있는 일은, • 활동 보조인 제도 지원을 포함해 동료 네트워크와 자조 단체의 발전 장려 • 장애에 대한 부정적인 태도에 대처하는 대중 인식 개선, 정보 제공, 교육 활동 계획에 기여 • 척수장애인의 스포츠, 종교, 문화, 여가 기회 접근 지원 • 건강 관리, 지원과 지지, 주택, 접근성 및 이동성, 교육과 고용 문제에 대하여 척수장애인과 가족 교육 및 역량 강화 지원 • 자원이 부족한 곳이나 농어촌 지역에서 지역 사회 중심 재활 계획 개발 등이 있다.
▶ 서비스 제공자가 할 수 있는 일은, • 자원에 민감하고, 알맞은, 그리고 시기적절하며 새로운 서비스 구축 지원, 척수손상 보건 의료 서비스 강화 지원 • 국제적으로 비교 가능한 척수손상 정보를 수집하고, 이 데이터를 연례 보고서 형식으로 인터넷에 게재하여, 사람들이 웹 서핑을 통해 이 데이터에 쉽게 접근할 수 있도록 보장 • 협력적, 통합적, 다학제적 서비스 시스템 구축을 통해 입원 환자, 외래 환자, 지역 사회 중심 관리의 원활한 단계별 전환을 보장하기 위한 지원 • 서비스 계획과 전달 시 척수장애인과 가족을 파트너로 참여시키며, 이들에게 정보를 제공하고, 의사 결정, 계획, 목표 설정, 모니터링, 평가 과정에 척수장애인과 가족을 포함시키는 것 등이 있다.
▶ 학계가 할 수 있는 일은, • 척수손상 연구를 장려하여 개입 초치에 관한 근거 기반 확대 • 이 보고서의 제안 사항 이행을 위해 정책 입안자와 다른 주요 이해 당사자들을 참여시킴 • 적절히 훈련된 건강 전문가의 충분한 공급을 보장하기 위해 전문가 교육 장려 • 장애와 관련된 인권 문제를 교사, 의사, 의학 관련 전문가 양성을 위한 대학 커리큘럼에 반드시 포함 • 3차(고등) 교육과 연구에서 척수장애인의 참여를 막는 장애물 제거 등이 있다.
▶ 민간 영역에서 할 수 있는 일은, • 적절하고 비용적으로 감당할 만한 보조 기기 기술 개발에 투자 • 건강, 스포츠, 교육 분야에서 척수장애인을 포함한 장애인들이 모든 제품과 서비스에 접근할 수 있도록 보장 • 새로운 제품과 서비스에 유니버설 디자인 적용
9. 제안: 미래를 향하여 265
• 공정한 취업, 정당한 편의 제공, 척수장애 근로자의 직장 복귀 지원을 보장하여 척수장애인을 채용하는 내용 등이 있다.
▶ 척수장애인과 가족이 할 수 있는 일은, • 척수장애인의 건강 관리 문제에 대해 스스로 교육 • 동료 지원과 자조 프로그램에 참여 • 지역 사회 교육과 인식 개선 활동에 기여 • 학교와 직장으로의 조기 복귀를 위한 기회 활용 • 적절한 경우, 삶의 기회 향상을 위한 자영업 활동 재교육 및 개발 고려 등이 있다.
결론
외상성, 비외상성 척수손상의 발생률은 줄일 수 있고 또한 반드시 줄여야 한다. 그러나 항상 새로운 척수손상 사례는 발생하게 될 것이다. 척수손상은 개인의 삶에서 가장 황금 같은 시기에 지속적 으로 큰 영향을 미치게 된다. 적절한 의료적, 재활적 조치 및 이후에 지원 서비스와 접근 가능한 환경의 보장은 척수장애인과 가족의 고통을 최소화하는 데 도움을 줄 수 있을 것이다. 이러한 조치는 또한 의존과 생산성 손실의 측면에서 발생할 수 있는 사회적 비용과, 낮은 자존감과 손상된 삶의 질 측면에서 발생할 수 있는 개인적 비용을 전반적으로 감소시켜 줄 것이다. 척수손상은 예방 가능 하며, 생존 가능하고, 건강한 생활과 사회적 통합의 장애물이 아니다. 그러나 정부와 다른 이해 당사자의 시급한 실천이 필요하다. 효과적인 행동 없이는, 척수손상은 앞으로도 계속 재앙으로 남게 될 수 있다.
▶ 참고 문헌 1. United Nations Department of Economic and Social Affairs, Population Division. World population prospects: the 2012 revision, 2013. DVD Edition. 2. Dahlberg A et al. Prevalence of spinal cord injury in Helsinki. Spinal Cord, 2005, 43:47-50. doi: http://dx.doi.org/10.1038/sj.sc.3101616 PMID:15520842 3. O’Connor PJ. Prevalence of spinal cord injury in Australia. Spinal Cord, 2005, 43:42-46. doi: http://dx.doi.org/10.1038/sj.sc.3101666 PMID:15326472 4. Noonan VK et al. Incidence and prevalence of spinal cord injury in Canada: a national perspective. Neuroepidemiology, 2012, 38:219-226. doi: http://dx.doi.org/10.1159/000336014 PMID:22555590 5. New PW et al. Prevalence of non-traumatic spinal cord injury in Victoria, Australia. Spinal Cord, 2013, 51:99-102. doi: http://dx.doi.org/10.1038/sc.2012.61 PMID:22665222 6. Middleton JW et al. Life expectancy after spinal cord injury: a 50-year study. Spinal Cord, 2012,
266 척수 손상의 국제적 관점
50:803-811. doi: http://dx.doi.org/10.1038/sc.2012.55 PMID:22584284 7. Gosselin RA, Coppotelli C. A follow-up study of patients with spinal cord injury in Sierra Leone.
International Orthopaedics, 2005, 29:330-332. doi: http://dx.doi.org/10.1007/s00264-005-0665-3 PMID:16094542 8. Lidal IB et al. Mortality after spinal cord injury in Norway. Journal of Rehabilitation Medicine, 2007, 39:145-151. doi: http://dx.doi.org/10.2340/16501977-0017 PMID:17351697 9. Rathore MFA. Spinal cord injuries in the developing world. In: JH Stone, M Blouin, eds. International
Encyclopedia of Rehabilitation, 2013. Available online: http://cirrie.buffalo.edu/encyclopedia/en/article/141/ 10. Hagen EM et al. Traumatic spinal cord injuries – incidence, mechanisms and course. Tidsskrift for
Den Norske Laegeforening, 2012, 132:831-837. doi: http://dx.doi.org/10.4045/tidsskr.10.0859 PMID:22511097 11. Leal-Filho MB et al. Spinal cord injury: epidemiological study of 386 cases with emphasis on those patients admitted more than four hours after the trauma. Arquivos de Neuro-Psiquiatria, 2008, 66:365-368. doi: http://dx.doi.org/10.1590/S0004-282X2008000300016 PMID:18641873 12. Post MWM, van Leeuwen CMC. Psychosocial issues in spinal cord injury: a review. Spinal Cord, 2012, 50:382-389. doi: http://dx.doi.org/10.1038/sc.2011.182 PMID:22270190 13. Young AE, Murphy GC. Employment status after spinal cord injury (1992–2005): a review with implications for interpretation, evaluation, further research, and clinical practice. International Journal of Rehabilitation Research, 2009, 32:1-11. doi: http://dx.doi.org/10.1097/MRR.0b013e32831c8b19 PMID:19057392 14. Access Economics for the Victorian Neurotrauma Initiative. The economic cost of spinal cord injury and traumatic brain injury in Australia. 2009 (http://www.tac.vic.gov.au/about-the-tac/our-organisation/ research/tac-neurotrauma-research/vni/the20economic20cost20of20spinal20cord20injury20and20trau matic20brain20injury20in20australia.pdf, accessed 9 January 2013). 15. WHO. Guidelines on the provision of manual wheelchairs in less-resourced settings. Geneva, World Health Organization, 2008. 16. Post MWM et al. Services for spinal cord injured: availability and satisfaction. Spinal Cord, 1997, 35:109-115. doi: http://dx.doi.org/10.1038/sj.sc.3100362 PMID:9044519 17. Kawu AA et al. A cost analysis of conservative management of spinal cord-injured patients in Nigeria. Spinal Cord, 2011, 49:1134-1137. doi: http://dx.doi.org/10.1038/sc.2011.69 PMID:21691278 18. Peden M et al., eds. World report on road traffic injury prevention. Geneva, World Health Organization, 2004. 19. O’Connor P. Trends in spinal cord injury. Accident; Analysis and Prevention, 2006, 38:71–77. doi: http://dx.doi.org/10.1016/j.aap.2005.03.025 PMID:16111641 20. Harries AD et al. The HIV-associated tuberculosis epidemic – when will we act? Lancet, 2010, 375:1906-1919. doi: http://dx.doi.org/10.1016/S0140-6736(10)60409-6 PMID:20488516 21. Yi Y et al. Economic burden of neural tube defects and impact of prevention with folic acid: a literature review. European Journal of Pediatrics, 2011, 170:1391-1400. doi: http://dx.doi.org/10.1007/ s00431-011-1492-8 PMID:21594574 22. Toriello HV. Policy and Practice Guideline Committee of the American College of Medical Genetics.
9. 제안: 미래를 향하여 267
Policy statement on folic acid and neural tube defects. Genetics in Medicine, 2011, 13:593-596. doi: http://dx.doi.org/10.1097/GIM.0b013e31821d4188 PMID:21552133 23. De-Regil LM et al. Effects and safety of periconceptional folate supplementation for preventing birth defects. Cochrane Database of Systematic Reviews, 2010 6:CD007950. Review. PubMed PMID: 20927767. 24. Flour Fortification Initiative. FFI Database. Atlanta, 2012. (http://www.sph.emory.edu/wheatflour/ globalmap.php accessed 28 May 2012). 25. Williams LJ et al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995– 2002. Pediatrics, 2005, 116:580-586. doi: http://dx.doi.org/10.1542/peds.2005-0592 PMID:16140696 26. Berry RJ et al. Folic Acid Working Group. Fortification of flour with folic acid. Food and Nutrition Bulletin, Review 2010, 31:S22–35. PubMed PMID 20629350. 27. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554
268 척수 손상의 국제적 관점
A 부록 역학적 결괏값들(발생률, 유병률, 병인, 사망률, 비용 등)에 대한 체계적인 검토를 위해 사용된 방법들 체계적 문헌 고찰 및 메타 분석 보고 지침(Preferred Reporting Items for Systematic Reviews and Meta-analyses: PRISMA)이 체계적 검토와 메타 분석의 투명하고도 포괄적인 보고를 보장하기 위한 가이드라인으로 사용되었다(1). PRISMA는 주요 선도
기관들과 의학 저널에서 지지하고
있다
(2).
▶ 연구 전략 2000년 1월 1일부터 2012년 8월 15일 사이에 펍메드/메드라인, 엠베이스(Pubmed, Medline, EMBASE) 온라인 의학 관련 전산 데이터베이스 - 와 라틴 아메리카-캐리비언 보건 과학 문헌(Latin American and Caribbean Health Sciences Literature), 인도 메드라스 센터(Indian Medlars Centre: IndMed)와 아프리카 메티쿠스 인덱스(African Index Medicus: AIM) 데이터베이스를 통해 관련 출판물을 검색했다. 이 검토를 통해, 외상성, 비외상성 척수손상의 원인을 이 보고서 4장에 포함시켰고, 국제 척수손상 데이터 세트(International Spinal Cord Injury Data sets)를 통해 분류하였다(3-5). 그리고 ‘척수손상들 (spinal cord injuries)’, ‘척수손상(spinal cord injury)’, ‘척수부상(spinal cord lesion)’, ‘하지마비 (paraplegi*)’, ‘사지마비(tetraplegi*)’, ‘사지마비(quadriplegi*)’, ‘외상성 척수손상(traumatic spinal
cord injury)’’, ‘척수손상과 이분척추증(spinal cord damage’ and ‘spina bifida)’이란 용어와 단축어인 ‘척수손상(SCI)’, ‘외상성 척수손상(TSC)’, ‘비외상성 척수손상(SCI)’이란 자유어(free term)를 이용해 데이터베이스를 검색했다. 추가적으로 결과와 관련된 자유어(free term)인 ‘유병률(prevalence)’, ‘발생률 (incidence)’, ‘역학(epidemiology)’, ‘~의 원인(cause of)’, ‘사망 원인(cause of death)’, ‘비용(cost*)’, ‘병인학(aetiology)’, ‘병인학(etiology)’, ‘사망률(mortality)’ 등도 포함시켰다. 데이터베이스 검색이 가능한 경우, MeSH terms - 의학 학술 정보 분류 체계 - 와 ‘척수손상(spinal cord injury)’, ‘하지마비 (paraplegia)’, ‘사지 마비(quadriplegia), ‘척추 파열증(spinal dysraphism)’과 같은 척수손상(SCI)의 주 제목 표명 및 ‘인과 관계(causality)’, ‘역학(epidemiology)’, ‘발생률(incidence)’, ‘유병률(prevalence)’, ‘사망률(mortality)’, ‘병인학(etiology)’, ‘사망 원인(cause of death)’, ‘비용과 비용 분석(costs and
cost analysis)’과 같은 결과어를 사용하여 본문 검색을 했다. 문헌 검색은 특별한 언어 제한 조건 없이 수행되었고, MeSH term 검색은 사람으로만 제한을 두었으며, 자유어 검색도 제한 조건 없이 자유롭게
부 록 269
진행되었고, 초록을 확인할 수 있는 논문만 포함시켰다. 또한 추가적 출판물의 검토를 위해 계통적 고찰 문헌과 문헌 요약에 있는 참고 문헌 리스트도 검토 하였으며, 그리하여 인쇄에 앞서 2012년 8월 1일부터 2012년 10월(2012년 10월 8일까지 온라인에서 확인 가능한)까지 온라인에 먼저 발표된 논문들인 전자 서적(EPUB)에 대해 온라인 수기 검사를 진행 하였다. 검토한 저널들은 다음과 같다. 척수(Spinal Cord), 척수 의학 저널( Journal of Spinal Cord Medicine), 척추(Spine), 재활 의학 저널(
Journal of Rehabilitation Medicine), 신경 외상 저널(Journal of Neurotrauma), 물리 치료 및 재활 기록(Archives of Physical Medicine and Rehabilitation), 미국 물리 치료-재활 저널( American Journal of Physical Medicine & Rehabilitation: PM&R), 역할 저널(Epidemiology), 국제 역학 저널 (International Journal of Epidemiology), 미국 역학 저널(American Journal of Epidemiology), 유럽 역학 저널(European Journal of Epidemiology), 역학 및 지역 사회 보건 저널(Journal of Epidemiology & Community Health), 임상 역학 저널(Journal of Clinical Epidemiology), 유럽 척추 저널(European Spine Journal), 골관절 수술 저널(Journal of Bone & Joint Surgery), 스칸디나비아 정형학과 저널 (Acta Orthopaedica Scandinavica), 아시아 척추 저널(Asian Spine Journal), 세계 척추 저널(Global Spine Journal), 신경외과-척추 저널(Journal of Neurosurgery: Spine), 인도 신경학 저널(Neurology India), 국제 보건 의료 기술 평가 저널(International Journal of Technology Assessment in Health Care), 국제 임상 평가 저널(Journal of Evaluation in Clinical Practice), 보건 서비스 연구 & 정책 저널(Journal of Health Services Research & Policy). 마지막으로 데이터 확인을 위해 척수손상 등록 웹 사이트를 검색했다. 이후의 보고서 제작 과정 동안 무작위로 검색한 2000년 1월 1일 이후 출판된 관련 문헌은 관련된 장의 정보 보충을 위해 사용하였다. ‘비용’ 결과 관련 사례는, 출판물 참고 목록 검토를 통해 발췌한 2000년 이전에 발행된 특히 중요한 출판물 또한 검토에 포함시켰다.
▶ 포함 기준 중복에 대한 확인 후, 얻어진 결과들의 제목과 초록을 두 명의 검토 위원이 체계적인 고찰 안에 포함 시키는 것이 적격한지를 결정하기 위해 검토하였다. 적격 여부가 초록을 바탕으로 결정되지 않은 경우 에는, 전체 문서를 구해서 필요한 경우 번역해서 검토했다. 불확실한 부분은 5명의 연구자로 구성된 합의 그룹을 통해 해결하였다. ‘발생률’과 ‘유병률’의 결과치에 대해서는 (1) 일반 인구 대비 해당 인구를 기술하였고 (2) 주요 병인의 하위 그룹(하지마비, 사지마비, 외상성 척수손상, 비외상성 척수손상, 이분척추증)을 포함한 논문은 검토 대상에 포함시켰다. ‘사망률’에 관한 논문들의 경우 아래의 내용 중 적어도 하나 이상을 정의한 경우에 포함시켰다.
270 척수 손상의 국제적 관점
(a) 사망률(층화된 혹은 되지 않은), (b) 상대 사망률, (c) 표준 사망률(SMRs), (d) 기대 수명 ‘병인’의 경우에, (a) 외상성 척수손상 혹은 비외상성 척수손상, (b) 손상의 원인이 보다 구체적인 원인 (즉, 차량 충돌, 스포츠, 폭력)으로 나타난 외상성, 비외상성 척수손상 분포, (c) 하위 그룹의 백분율에 대한 자료가 있는 연구에 검토에 포함시켰다. 비교 분석의 경우에 병인 데이터는 필요한 경우에 ISCoS가 권고한 분류 방법 (3, 5)을 사용해 재분류하였다.
▶ 배제 기준 모든 결괏값에 있어서, 예외적으로 다음의 경우만을 다룬 연구는 검토에서 제외했다. 척수손상의 하나의 하위 분류적 상태만을 다룬 경우(골연골 이형성증, 신경 매독, 척수성 소아마비, 인체 T 림프 영양성 바이러스 감염, 유전성 강직성 마비, 락트인(감금) 증후군, 이완성 마비, 브라운 세커드 신드롬, 중심 척수 증후군, 방사선 검사상 이상이 없는 척수손상(SCIWORA), 악성 척수 압박), 특정한 합병증이나 동반 질환만을 다룬 경우(혈관계 혹은 척추 수술, 암 발생 이후), 소수 인종이나 직업과 관련된 경우(퇴역 군인), 전체 모집단을 대표하지 못하고 하나의 특정한 상황만 관련된 경우(일과 관련된 척수손상), 치료 비용 비교나 세부 치료와 관련된 경우(혈전증, 소작, 약물) 등이다. 마찬가지로 하나의 사례만 등록된 경우(예: 외상 등록 시스템 내의 차량 사고)나 사례 연구인 경우에도 제외를 했다. 이분척추증의 경우, 발생률 데이터를 보고한 논문에서만 데이터를 발췌했으며, 가능한 경우에는 식이 엽산 첨가 강화 전후 연구에서도 발췌를 했다. 그리고 데이터가 불완전한 연구도 추가적으로 제외했다(예: 사망자와 척수손상 사례의 숫자가 없는 경우). 미국 척수손상 모델 시스템(US Spinal Cord Injury Model System)은 사회 통계학적, 시대적 영역 전반에 걸쳐 층위의 측면에서 가장 세밀하고 풍부한 데이터 대표성을 가진 것으로 입증되었기 때문에 우선적으로 2011년 보고서에서 데이터를 발췌했다(6). 자격 기준에 부합하는 외국어 논문의 경우에는, 합의 그룹이 먼저 그 논문의 영문 초록을 검토한 후 데이터 추출을 위해 번역할 만한 대표성을 가진 연구인가를 결정했다. 반복되거나 중복되는 부분이 있는 출판물인 경우에는, 체계적인 검토를 포함할 수 있는 가장 최근 혹은 포괄적인 연구를 선택했다.
▶ 데이터 추출 데이터는 주요한 연구의 특성, 포함과 배제 기준에 관련된 정보, 결과 도출을 위한 모든 관련 데이터 (발생률, 유병률, 병인, 사망률, 비용)에 관한 전체 논문에서 추출하였다. 추출한 데이터의 품질은 기록 데이터의 교차 확인을 위한 검색 방법에서 차용한 기존의 체계적인 검토 방법을 사용해서 테스트하였다. 최종 요약 테이블 데이터는 다시 한번 상호 교차 확인 및 3명의 합의 그룹 멤버들이 원래의 논문과 비교하는 과정을 거쳤다. 관련된 데이터가 그래픽 자료만으로 확인 가능한 경우에는(예: 누적 생존을 구하기 위한 카플란 마이어(Kaplan–Meier) 표), 그래프를 스캔해서 그래픽 디지타이저(Digitizer) 소프트
부 록 271
웨어를 사용해 데이터로 변환시켰다. 또한, 발생률을 알 수 없으나, 잘 규정된 자료 수집 구역(대부분 국가)에서 일정 기간에 걸쳐 발생한 외상성, 비외상성 척수손상의 전체 숫자에 관한 정보가 제공된 연구의 경우에는, 대략적인 발생률을 추정하기 위해서 인터넷에서 획득한 정보(국가별 국가 통계청 혹은 세계 질병 부담(Global Burden of Disease) 데이터베이스)를 바탕으로 국가별 모집단 규모를 추정했다.
▶ 추정의 재계산 모집단 평균을 확인할 수 없는 사례의 경우에는, 각각의 층의 상대 모집단에 가중치를 부여한 확인된 층화 추정치를 이용해 모집단 평균 추정치를 추출했다.
▶ 도표 2.5. WHO 회원 지역의 외상성 척수손상 분포 성인과 성인/소아 혼합 모집단 내의 외상성 척수손상 병인을 다룬 연구를 다양한 기준에 근거해 지역별 병인 총 점수를 계산하기 위해 선택하였다. 자료가 있는 경우, 대부분 가장 최근에 실시한 전국적인 혹은 대규모 연구를 선택했으나, 이 중에서도 교통사고와 추락 내용을 다룬 경우에만 선택하였다. 수년 동안 중복 내용 보고로 병인 전반에 걸쳐 층화가 부족한 연구는 배제하거나 혹은 병인의 형태를 ‘기타’ 항목으로 분류했다. 미국의 국가 척수손상 통계 센터(NSCISC)의 가장 최근 2011년 연례 보고서 (6)를 주요 데이터 소스로 이용했으며, 또한 매년 중복되는 데이터와 모델 시스템 데이터에 의존하는 특정 연구에서 사용한 하위 그룹 문제를 피하기 위해서도 이용했다. 외상성 척수손상의 전반적인 병인에 관한 지역별 추정은 두 단계에 걸쳐 도출되었다. 첫째, 국가별 외상성 척수손상 병인은 이용 가능한 연구의 샘플 사이즈의 인수 분해를 통해 원인의 가중 평균 분포를 이용해 추출했다. 둘째, 지역별 외상성 척수손상 추정은 데이터를 제공한 국가의 2011년 모집단 규모를 인수 분해해서 국가별로 구분된 원인별 외상성 척수손상의 가중 평균 분포를 이용해 계산했다. 모집단 데이터는 유엔 통계국의 온라인 자료에서 가져왔다(7). 주목할 만한 점은, 대만 (8)에서 획득한 데이터를 중국의 추정치 계산을 위해 이용했으나, 상대적으로 작은 샘플 크기를 고려할 때, 전반적인 추정치에는 거의 영향을 미치지 않았다.
▶ 참고 문헌 1. Liberati A et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Medicine, 2009, 6:e1000100. doi: http://dx.doi.org/10.1371/journal.pmed.1000100 PMID:19621070 2. Endorsers PRISMA. (http://www.prisma-statement.org/endorsers.htm, accessed 26.6.2013). 3. Biering-Sørensen F et al. International Spinal Cord Injury Data Sets. Spinal Cord, 2006, 44:530-534. doi: http://dx.doi.org/10.1038/sj.sc.3101930 PMID:16955072 4. ISCIDS. The International SCI Data Sets. International Spinal Cord Society (ISCoS) (http://www.iscos.org. uk/page.php?content=20, accessed 22 May 2013).
272 척수 손상의 국제적 관점
5. New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord, advance online publication, January 2013. doi: 10.1038/sc.2012.160. doi: http://dx.doi.org/10.1038/sc.2012.160 209 Technical appendix A 6. National Spinal Cord Injury Statistical Center. Complete Public Version of the 2011 Annual Statistical Report for the Spinal Cord Injury Model System. Birmingham, Alabama, 2011. 7. United Nations Statistics Division. (http://unstats.un.org, accessed 26.6.2013). 8. Wu JC et al. Effects of age, gender, and socio-economic status on the incidence of spinal cord injury: an assessment using the eleven-year comprehensive nationwide database of Taiwan. Journal of
Neurotrauma, 2012, 29:889-897. doi: http://dx.doi.org/10.1089/neu.2011.1777 PMID:21510819
부 록 273
B 부록 2장에서 이용한 데이터 소스의 한계점 활용 가능한 가장 좋은 데이터를 사용하기 위해 모든 노력을 기울였음에도 이 장에서 사용한 데이터에는 다음과 같은 몇 가지 한계점이 있다. • 척수손상 사례 정의와 포함 기준의 차이 • 이용 가능한 척수손상 데이터 대표성의 차이. 데이터의 실질적인 대표성이 항상 명확하지 않음. 예: 국가별 통계가 국가, 지역, 하부 지역 데이터 중 어디에서 추출되었는지 명확하지 않음. • 수집된 (지역 혹은 국가) 데이터의 완전성 수준의 차이 • 방법론적 리포팅(methodological reporting)의 부적절한 품질
몇몇 구체적인 한계는 이 보고서에서 사용한 주요 지표와 관련해 확인되었으며, 내용은 다음과 같다. • 발생률: 사례의 소스 모집단(자료 수집 지역)이 종종 제대로 정의되지 않았으며, 특히 지역별 데이터, 여러 센터 혹은 단일 센터 데이터에 관한 연구에서는 더욱 심했다(예: 대상 병원이 지역에서 유일한 척수손상 의뢰 센터 인지가 항상 명확하지 않음). 게다가 외상성 척수손상 발생률은 종종 척수손상 발생 시점에 사망한 사람의 포함 여부가 확실하지 않았다. 또한 비외상성 척수손상의 경우에는, 종종 삶의 마지막 케어 시점에 척수손상으로 확인된 사람의 포함 여부가 확실하지 않았다. • 유병률: 사례의 대조 모집단은 종종 제대로 정의되지 않았다. 대부분의 국가는 이용 가능한 직접적인 유병률 데이터가 없었으며, 대체(proxy) 데이터도 구하기 어려웠다(예: 보험 데이터, 장애 수당 데이터 등). 그 결과로, 유병률 추정은 종종 대략적인 추정을 포함한 취약한 근거 기반에 의존한 연구 모델에서 추출할 수밖에 없었고, 따라서 상당 부분 불확실성을 가질 수밖에 없었다. • 사망률: 누적 사망률(예: 카플란-마이어 방법), 사망률 모델링, 혹은 사망률 위험 요소(사건까지의 분석 시간, 콕스 회귀(Cox regression) 모델)의 평가에 있어서 사례의 포함과 배제에 관한 방법론적 기준과 절차가 일반 적으로 기술되어 있지 않았다. 특히, 환자가 다른 지역으로 이주하여 추적이 불가능한 경우와 환자의 사망 여부를 완전히 확인할 수 있는 경우에(Right censoring: 환자를 더 이상 추적할 수 없는 경우) 관한 연구 보고서는 거의 없었다. 게다가 조기 사망 사례가 분석에 포함된 여부가 종종 명확하지 않았다(Left censoring: 연구 시작 전 사건 발생). • 병인: 향후에 진행되는 연구는 외상성, 비외상성 척수손상 병인의 분류와 계층적 보고에 관한 ISCoS의 국제 권고를 보다 엄격히 준수해야 한다. 게다가 일과 자해(자살 시도)로 인한 외상성 척수손상의 사례는 체계적으로 문서화될 필요가 있다(예: ISCoS의 분류에 더해서, 추락의 원인을 작업이나 자살 등으로 세분화).
274 척수 손상의 국제적 관점
C 부록 이분척추증 데이터의 메타 분석 이분척추증 연간 발생률* 추출 데이터에 관한 무작위 효과(random effects) 메타 분석은 3가지 타입의 이용 가능한 데이터의 서머리 추정치를 얻기 위해 시행되었다. 분석에서 완전 성과 우선적인 사용의 늘어나는 순서에 따라 데이터 타입에는 생존 출산 데이터만, 생존 출산과 사산 데이터, 생존 출산 및 사산과 임신중절 데이터를 포함시켰다. 메타 분석은 ‘메탄(metan)’이란 명령어를 사용해 통계 패키지인 STATA(버전 12.1)를 가지고 시행했다. 표준 오차를 반영한 연간 발생률은 포인트 추정과 개별 연구의 분산 측정을 위해 각각 사용되었다. 분석 결과는 숲그림(Forest plots) 방식으로 그래픽적으로 표현 됐으며, 데이터 타입으로 층위화되었다. 보고된 발생률 사례에서는 인종, 사회 경제적 상태, 측정 기술, 문화적 영향 (1, 2)을 포함한 여러 요인 때문에 몇몇 편차가 관찰되었다. 전체적인 비율에 대한 관찰된 편차의 영향을 확인하기 위해, 민감성 분석이 진행되었다. 그리고 분석을 시행할 때, 오만에서 알라스포르(Alasfoor) 등이 (3), 중국에서 리 (Li) 등이 (4, 5) 진행한 연구처럼 대다수의 연구와 비교했을 때, 특히 이질적인 것처럼 보이는 연구는 제외하고 실시하였다. 오만 연구만 제외했을 때, 이분척추증 발생률은 7.4/10,000으로 떨어졌다. 리(Li) 등이 진행한 두 연구를 제외하면, 전반적인 발생률은 8.4/10,000이 되었고, 반면에 오만의 연구와 두 개의 중국 연구 모두를 제외하면, 발생률은 7.2/10,000까지 떨어졌다. 이분척추증 발생률의 메타 분석 안에 포함된 각각의 연구에서 사용한 데이터 타입의 영향을 고려한 메타 분석 결과 이외에도 하위 그룹 분석이 진행되었다. 하위 그룹 분석 결과, 데이터 타입에 상관없이 모든 연구를 포함해 계산한 발생률인 8.4/10,000과 비교했을 때, 생존 출산율만을 이용한 연구에서 발 생률은 4.5/10,000으로 나타났다. * 주: 이분척추증에 대한 문헌 자료에서, ‘유병률’과 ‘발생률’이란 용어가 모순적으로 사용되었다. 로스만(Rothman) 등 (6)은 어느 정도 변형을 가지고 태어난 신생아의 비율을 유병률로 정의했으나 발생률로는 정의하지 않았다. 그러면 변형의 발생률은 태아의 모집단에서 발생한 것이 된다. 그럼에도 불구하고, 이 보고서에서는, 임신 중절 데이터를 포함한 다른 데이터 타입을 이용한 연구가 포함되었던 것처럼, ‘발생률’이란 용어를 이분척추 증의 비율을 리포팅할 때 사용했다.
부 록 275
▶ 참고 문헌 1. Gardner BR, Strickland M, Correa A. Application of the automated spatial surveillance program to birth defects surveillance data. (Part A). Birth Defects Research Part A., Clinical and Molecular
Teratology Teratol, 2007, 79:559-564. doi: http://dx.doi.org/10.1002/bdra.20363 PMID:17385687 2. Zlotogora J, Amitai Y, Leventhal A. Surveillance of neural tube defects in Israel: the effect of the recommendation for periconceptional folic acid. The Israel Medical Association Journal, 2006, 8:601-604. PMID:17058407 3. Alasfoor D, Elsayed MK, Mohammed AJ. Spina bifida and birth outcome before and after fortification of flour with iron and folic acid in Oman. Eastern Mediterranean Health Journal, 2010, 16:533-538. PMID:20799554 4. Li ZW et al. Prevalence of major external birth defects in high and low risk areas in China, 2003. Zhonghua Liu Xing Bing Xue Za Zhi, 2005, 26:252-257. PMID:15941530 5. Li ZW et al. Extremely high prevalence of neural tube defects in a 4-county area in Shanxi Province, China. Birth Defects Research. Part A, Clinical and Molecular Teratology, 2006, 76:237-240. doi: http://dx.doi.org/10.1002/bdra.20248 PMID:16575897 6. Rothman KJ, Greenland S, Lash TL, eds. Modern Epidemiology. 3rd ed. Philadelphia, Wolters Kluwer Health/Lippincott Williams & Wilkins, 2008.
276 척수 손상의 국제적 관점
D 부록 엽산 강화식품이 이분척추증 발생률에 미치는 영향에 대한 메타 분석 질병 부담(엽산 강화식품(FAFF)의 부족으로 인한 이분척추증 태아 임신의 추가적인 사례)은 다음의 가정과 고려하에서 예측되었다. 즉, 이분척추증이 상대적으로 드문 조건이기 때문에, 전 세계의 생존 출생 숫자는(자발적 낙태, 사산, 임신 중절(TOP) 포함한) 모든 임신으로 대신할 수 있다는 점이다. 그러 므로 발견되지 않은 사례는 추정 발생률에 거의 영향을 미치지 않으며, FAFF는 세계적으로 이분척추증 발생률에 유사한 영향을 미칠 수 있다. 부담 계산을 위해서, 이분척추증 배경 발생률(background incidence rates)의 지역별 추정을 계산했다. 이는 지역적 편차 문제를 처리해 보다 정확한 추정을 하기 위함이다. 잠재적으로 예방 가능한 이분척추증 임신의 추정 숫자는 생존 출생 시 이분척추증의 발생률(IR)을 보고한 연구만을 가지고 계산한 FAFF의 효과 크기(effect size)에 기반을 두었다. 왜냐하면 세계적인 출산 데이터는 생존 출산에 대해서만 이용할 수 있기 때문이다. 추가적으로, 연구 사이의 이질성을 어떤 측정 변수, 즉 FAFF 섭취 이전의 발생률과 사용한 데이터 타입 (생존 출생만, 생존 출생&사산, 혹은 임신 중절)을 가지고 설명할 수 있는지를 결정하기 위해 메타 회귀 분석을 실시했다. 메타 회귀 분석은 ‘메타레그(metareg)’란 명령어를 사용해 통계 패키지인 STATA(버전 12.1)를 가지고 시행했다. 메타 회귀 분석 결과, FAFF 법안 이전의 이분척추증 발생률은 FAFF의 효과와 유의미한 관련이 있는 것으로 나타났다. 그러나 사용된 출생 데이터의 타입과 FAFF의 효과는 유의미한 관련이 없는 것으로 관찰되었다. 전반적으로, 이 모델은 원래의 메타 분석에서 나타난 이질성의 92%를 설명하고 있다(그림 D.1 참조). FAFF 섭취 이전의 배경 발생률이 FAFF의 효과 크기에 미치는 영향은 잠재적으로 피할 수 있는 이분척추증 임신의 수 – 이 정보는 메타 회귀 분석을 통해 구했다 - 를 계산 하는 경우 고려했다. 그러므로, 이분척추증의 부담 값이 생존 출생 데이터만을 적용해 계산한 발생률과 효과 크기를 사용한 추정치인 경우, 잠재적으로 37,979건의 이분척추증 임신을 예방할 수 있다는 결론을 얻을 수 있다. 이 분석이 생존 출생 데이터만을 포함시켰기 때문에, 잠재적으로 예방 가능한 임신의 숫자는 여러 이유로 인해 과소평가되었을 가능성이 크다. 예를 들어, 만약 이분척추증인 경우에, 임신 중절을 했을 가능성이
부 록 277
더욱 커질 수도 있다. 또한, 비록 문헌에서는 이분척추증 임신의 사산 위험성 증가에 대한 내용을 제시 하고 있지 않을지라도, 이분척추증의 영향으로 인한 사산 관련 정보의 부족은 정확한 발생률을 희석시 키는 원인이 될 수도 있다.
(그림 D.1) FAFF 섭취 이전의 이분척추증 발생률과 FAFF의 효과 (위험비)
278 척수 손상의 국제적 관점
용어해설
접근성(Accessibility) 가능하면 많은 사람들 , 특히 장애인이 이용할 수 있는 환경, 서비스, 상품의 정도.
장애(Disability) ICF에서 손상 , 활동 제약 , 참여 제한에 대해 사용 하는 광범위한 용어로서, 어떤 건강 상태의 개인과 환경&개인 요인 간에 발생하는 상호작용의 부정적 측면을 나타냄.
접근성 기준(Accessibility standard) 기준은 일반적인 표준으로 받아들여지는 질적 수준. 접근성의 원칙은 법과 조약에 의해 정해질 수 있고, 규범 , 기준 , 코드에 따라서 구체적으로 기술되며 , 강제적일 수도 자발적일 수도 있다.
할 수 있게 하는 환경(Enabling environments) 장벽을 제거하고 촉진적 내용의 제공을 통해 개인의 참여를 지원할 수 있는 인간이 구축한 물리적인 환경.
보조 기기/보조 기술 (Assistive device or technology: AT) 사람의 업무나 활동 수행을 증대 및 유지하고 도울 수 있도록 상업적으로 습득, 개조, 맞춤화할 수 있는 기기의 어떤 부분이나 부품.
환경 요인(Environmental factor) ICF에서 기술하는, 사람이 살아가고 삶을 영위하기 위한 물리적, 사회적, 태도적 환경 특징. 예를 들어, 상품과 기술, 자연환경, 지원과 관계, 태도와 서비스, 시스템과 정책 등.
지역 사회 중심 재활 (Community-based rehabilitation: CBR) 장애인의 재활, 기회 평등, 빈곤 퇴치, 사회 통합을 위한 일반적인 지역 사회 개발 전략. 지역 사회 중심 재활은 장애인 당사자 , 장애인 가족과 정신 건강 , 교육 , 직업 , 사회 , 기타 서비스 관련 정부 ·비정부 기관의 공동의 노력을 통해서 이행.
기능(Functioning) ICF에서 신체 기능, 신체 구조, 활동, 참여를 설명하는 용어. 기능은 (건강 상태와 함께) 개인과 그 개인의 상황적 요인들 (환경 요소와 개인 요소) 간의 상호 관계를 긍정적으로 기술한다. ‘기능’이란 용어는 신체 기능만을 언급.
이차 건강 상태(Health condition, secondary) 일차 건강 상태에 있는 개인이 경험할 수도 있는 부가 적인 건강 상태로, 이는 일차 건강 상태에서 유발되는 높은 감염성이나 취약성에서 유발된다. 예: 욕창
동반 질환(Co-morbidity) 일차 건강 상태와 관련이 없거나 독립적으로 경험할 수도 있는 추가적인 건강 상태.
장애인권리협약(CRPD) 유엔에서 2006년 채택한 국제 협약으로, 장애인의 존엄 , 비차별 , 참여 , 접근성 , 평등과 같은 일반적 인권 원칙뿐만 아니라 , 사회적 삶의 모든 영역 가족과 공동체, 교육, 고용, 보건과 사회적 자원에 대한 접근 - 과 관련된 구체적인 인권을 기술하고 있다 . 권리 협약은 명시적인 사회적 , 경제적 개발 측면을 담고 있다.
손상(Impairment) ICF에서 ‘손상’은 통계학적인 인구 표준에 기반하여, 신체 구조나 (정신 기능을 포함한) 신체 시스템의 생리 학적 기능에 심각한 이상이 생긴 경우를 지칭.
척수손상 발생 건수(Incidence of SCI) 구체적인 기간 동안 새롭게 발생한 척수손상 사례의 숫자.
용어해설 279
손상의 외적 요인에 따른 국제 분류(International Classification of External Causes of Injury: ICECI) 국제 보건 기구(WHO)가 손상의 형태, 손상의 상황, 원인을 분류한 내용으로, 손상의 발생을 측정하고 모니터링하는 데 사용.
욕창(Pressure ulcers (sores)) 피부에 가해지는 압박이나 혹은 피부 마찰과 압박이 함께 일어나서 주로 뼈 위의 피부와 내부 조직에 발생 하는 국부적 손상으로, 경증 욕창부터 조직 괴사에 이르는 심각한 욕창까지 다양하게 발생.
국제 기능 장애 건강 분류(International Classification of Functioning, Disability and Health: ICF) 건강 상태 경험과 관련된 건강과 건강 관련 기능의 상황을 기술하기 위한 표준 언어와 개념적 프레임 워크를 제공하는 국제 보건 기구 (WHO)의 분류법.
척수손상 유병률(Prevalence of SCI) 한정된 인구에서 한정된 기간에 발생하는 척수손상의 모든 사례 총합.
점진적 실현(Progressive realization) 건강권처럼 어떤 경제적 , 사회적 인권을 인정하는 인권법의 원칙으로, 자원의 제약으로 국가가 단기간에 달성하긴 어렵지만 반드시 보유한 수단을 통해 달성 해야 하며 가용 가능한 자원으로 보다 점진적으로 달성해야 하는 원칙.
국제 척수손상 데이터 세트(International SCI Data Sets) 데이터 세트는 척수손상과 관련된 생리학적, 심리학적 특성의 핵심 카테고리와 삶의 질에 대한 데이터로 구성되어 있으며, 이는 새로운 치료법, 재활 전략과 장비 시험을 위해 적절히 사용할 수 있음.
저상 버스(Kneeling buses) 문자 그대로 이동에 불편이 있는 사람들이 쉽게 접근 할 수 있도록 탑승구를 낮출 수 있게 설계된 버스.
의지 기사-보조 기사(Prosthetist–orthoptist) 보철 /보조 기기나 기능 향상을 위해 고안된 기타 이동용 장비를 제공하는 의료 전문가 . 보조 기기 치료는 신체 부분의 기능 지원, 강화, 향상을 위해 고안된 외부 장비를 포함. 보철 기기 개입은 인공적인 기기를 사용해 신체 외부 부분을 대체하는 것.
사망률(Mortality rate) 한정된 지역과 한정된 기간에 발생하는, 특정 인구나 각 개체군 내의 사망자 비율.
비외상성 척수손상 (Non-traumatic spinal cord Injury: NTSCI) 비외상성 원인으로 인해 척수에 가해지는 어떠한 손상. 예를 들어, 이분척추증이나 감염에 의한 중도 손상, 혈액 공급 소실(심근경색), 암이나 종양 혹은 퇴행성 관절염으로 인해 척추뼈가 서서히 퇴행하면서 발생하는 척수 압박과 같은 선천적·유전적 기형.
정당한 편의(Reasonable accommodation) 예외적인 혹은 부당한 부담을 지우는 것이 아닌, 필요 하고 적절한 변경이나 조정을 통해 장애인들이 비장애인들과 동등하게 인권을 누릴 수 있도록 보장 하는 조치.
재활(Rehabilitation) 장애를 경험한(혹은 경험할 가능성이 높은) 개인이 주변 환경과 상호 작용할 수 있도록 최적의 기능을 달성, 유지하도록 지원하는 일련의 조치.
보조 교통수단(Paratransit) 장애인, 노인, 주류 교통수단을 이용할 수 없는 사람 들의 교통 요구에 맞추어 마련된 , 고정 노선이나 스케줄에 따라 운영되지 않고 탄력적으로 운영되는 민영 혹은 공공의 대안적 교통수단(예: 미니버스나 택시). 또한 특별 교통 서비스(Special Transport Serivce: STS)로 알려져 있음.
단기 파견 관리(Respite care) 가족과 같은 비공식 돌봄 제공자를 위해 임시적으로 단기간에 전문 간병인을 파견하여 이들에게 휴식을 제공하는 제도. 이들이 없으면 보호 대상자는 가정이 아닌 시설에 영구적으로 거주할 수밖에 없음.
280 척수 손상의 국제적 관점
학교–통합(inclusive), 통합적(integrated-특수 학급), 특수(special) 통합(inclusive) 학교에서는, 장애 학생들이 또래의 비장애 학생들과 같은 교실에서 수업을 받고, 가능한 범위 내에서 수업 과정에 참여하고, 필요에 따른 추가 자원이나 지원을 제공받는다. 통합적(intergrated특수 학급) 학교에서는, 장애 학생들이 분리된 반에서 공부하며 주류 학교의 추가적인 지원이 이루어진다. 특수(special) 학교 혹은 분리(segregated) 학교는 장애 학생들에게 주류 교육 제도와 분리된 환경의 특수한 서비스를 제공한다.
척수손상 등록부(Spinal cord injury registry) 과학적 , 임상적 , 정책적 목적으로 모집단 결과를 평가하기 위해 일정 기간 동안 모집단의 척수손상에 대한 동일한 임상, 기타 정보를 수집한 데이터베이스.
외상성 척수손상(Traumatic spinal cord injury: TSCI) 어느 정도의 외부의 힘이 가해진 결과 외상이나 손상으로 인해 척수에 가해지는 어떤 손상. 예를 들면, 교통사고, 추락, 폭력 행위 등.
트래블 체인(Travel chain) 여행을 구성하는 모든 요소. 즉, 출발점부터 목적지 까지의 보행자 접근 , 교통수단 , 환승 포인트 등을 모두 포함.
사회 주택(Social housing) 사회 주택은 대개 자치 단체나 NGO에서 주택이 필요한 사람들에게 저렴한 가격으로 안정적으로 공급하는 주택 (‘적절한 가격 ’의 주택 , ‘공공 ’ 주택 이라고도 불림).
유니버설 디자인(Universal design) 추가적인 개조나 특수한 디자인이 필요 없이 모든 사람들이 가능한 한 최대한으로 이용할 수 있는 제품, 환경, 프로그램, 서비스의 디자인 원칙.
사회적 보호(Social protection) 빈곤, 실업, 노령, 장애로 인해 발생하는 박탈감과 요구 불충족을 줄이기 위한 목적의 사회 프로그램.
직업 재활(Vocational rehabilitation) 장애인의 적절한 고용을 보장 , 유지 , 증진시키기 위하여, 장애인의 능력을 회복 또는 개발시키기 위해 고안된 프로그램. 직업 훈련, 직업 상담, 직업 소개를 예로 들 수 있음.
척수손상(Spinal cord injury: SCI) 외상성 , 비외상성 원인에 의해 척수에 가해지는 손상 . (이 용어해설의 외상성 / 비외상성 척수손상 참조 ). 척수에 가해지는 손상이나 외상으로 인해 기능의 손상과 소실이 발생.
용어해설 281