World report on hearing

WORLD REPORT ON HEARING The cover image is an artistic representation of a sound wave entering the cochlea. The sound wave in this image represents the musical notes of the ‘Sound of Life’, a song specially created for the WHO Make Listening Safe initiative by Ricky Kej. Download the song here https://youtu.be/EmXwAnP9puQ WORLD REPORT ON HEARING ii WORLD REPORT ON HEARING World report on hearing ISBN 978-92-4-002048-1 (electronic version) ISBN 978-92-4-002049-8 (print version) © World Health Organization 2021 Some rights reserved. This work is available under the Creative Commons Attribution-NonCommercial- ShareAlike 3.0 IGO licence (CC BY-NC-SA 3.0 IGO; https://creativecommons.org/licenses/by-nc-sa/3.0/igo). Under the terms of this licence, you may copy, redistribute and adapt the work for non-commercial purposes, provided the work is appropriately cited, as indicated below. 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Designed by Inis Communication iiiCoNtENts CONTENTS Foreword v Acknowledgements ix Abbreviations xii Introduction 1 References 5 1 THE IMPORTANCE OF HEARING ACROSS THE LIFE COURSE 9 1.1 Overview 9 1.2 Hearing across the life course 11 1.3 Decline in hearing capacity 36 1.4 The impact of unaddressed hearing loss 44 References 51 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 65 2.1 Overview 65 2.2 Prevention of hearing loss and ear conditions 67 2.3 Early identification of hearing loss 83 2.4 Care and rehabilitation 95 References 120 iv WORLD REPORT ON HEARING 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 201 4.1 Overview 201 4.2 H.E.A.R.I.N.G. interventions as part of universal health coverage 204 4.3 Investing in ear and hearing care: the business case 212 4.4 Scaling up ear and hearing care: global targets and tracer indicators 223 4.5 People-centred ear and hearing care delivered through a strengthened health system 226 4.6 Health systems enablers for integrated people-centred ear and hearing care 232 4.7 Conclusion and recommendations: making ear and hearing care accessible for all 244 References 251 WEB ANNEXES WEB ANNEX A Quality of evidence https://apps.who.int/iris/bitstream/hand le/10665/339906/9789240021501-eng.pdf WEB ANNEX B The return on investment from actions to prevent and/or mitigate the impact of hearing loss https://apps.who.int/iris/bitstream/hand le/10665/339906/9789240021501-eng.pdf WEB ANNEX C Tracer indicators for monitoring progress in ear and hearing care https://apps.who.int/iris/bitstream/hand le/10665/339906/9789240021501-eng.pdf 3 CHALLENGES FACING EAR AND HEARING CARE 139 3.1 Overview 139 3.2 Demographic and population trends 141 3.3 Ear and hearing care literacy and stigma related to hearing loss 146 3.4 The challenges for health systems and potential solutions 154 References 190 vFoREwoRd FOREWORD Hearing loss has often been referred to as an “invisible disability”, not just because of the lack of visible symptoms, but because it has long been stigmatized in communities and ignored by policy-makers. Unaddressed hearing loss is the third largest cause of years lived with disability globally. It affects people of all ages, as well as families and economies. An estimated US$ 1 trillion is lost each year due to our collective failure to adequately address hearing loss. While the financial burden is enormous, what cannot be quantified is the distress caused by the loss of communication, education and social interaction that accompanies unaddressed hearing loss. What makes this matter more pressing than ever is the fact that the number of people with hearing loss is likely to rise considerably in the coming decades. Over 1.5 billion people currently experience some degree of hearing loss, which could grow to 2.5 billion by 2050. In addition, 1.1 billion young people are at risk of permanent hearing loss from listening to music at loud volumes over prolonged periods of time. The World report on hearing shows that evidence-based and cost–effective public health measures can prevent many causes of hearing loss. To guide future action, the World report on hearing outlines a package of interventions for Member States to adopt, and proposes strategies for their integration in national health systems to ensure equitable access to ear and hearing care services for all those who need them, without financial hardship, in accordance with the principles of universal health coverage. The COVID-19 pandemic has underlined the importance of hearing. As we have struggled to maintain social contact and remain connected to family, friends and colleagues, we have relied on being able to hear them more than ever before. It has also taught us a hard lesson, that health is not a luxury item, but the foundation of social, economic and political development. Preventing and treating disease and disability of all kinds is not a cost, but an investment in a safer, fairer and more prosperous world for all people. As we respond and recover from the pandemic, we must listen to the lessons it is teaching us, including that we can no longer afford to turn a deaf ear to hearing loss. Dr Tedros Adhanom Ghebreyesus Director-General, World Health Organization vi WORLD REPORT ON HEARING When I travel to countries around the world, I meet girls who have struggled against poverty, child marriage and discrimination to stay in school and finish their education. These young women are from different backgrounds, practice different religions and speak different languages; but they share the same determination to pursue their dreams for the future. With all the barriers to equality facing girls, women and other marginalized people, those who need hearing care are further disadvantaged and too often left behind. About 1 billion people around the world are at risk of avoidable hearing loss. WHO estimates that over 400 million, including 34 million children, live with disabling hearing loss, affecting their health and quality of life. Because I have also suffered hearing loss, I know this doesn’t need to be an obstacle to education. With access to health care, rehabilitation and technology, people with disabling hearing loss can participate equally in education, employment and their communities. Hearing loss doesn’t keep them from reaching their full potential: poverty and discrimination do. To address this global public health challenge, the World report on hearing offers evidence-based, equitable and cost–effective actions for ear and hearing care. Following the guidance in this report, WHO Member States can help prevent hearing loss and ensure that people with hearing loss can access the care they need. I hope our leaders will work together to implement the recommendations in the World report on hearing – and give every person with hearing loss the chance to contribute to our shared future. Malala Yousafzai Nobel laureate and UN messenger of peace viiFoREwoRd From an early age, I knew I’d be involved music in some capacity because music was everything to me. There are millions of people out there who share those same feelings. For the past forty-five years, I have been careful how I enjoy music. I’d like to use this World report on hearing to pass on this message: “Music is everything, and so is your hearing.” Hearing loss doesn’t just affect the young, it affects all age groups. The way we enjoy our music is what counts; volume can damage your hearing forever. So take care of your hearing with the level you listen to it. Remember, if you lose your sense of hearing, it won’t come back. Keep rockin’, be safe. Bryan Adams Musician viii WORLD REPORT ON HEARING The ability to hear is a gift human beings are given to appreciate the amazing beauty of the world around us. It bestows aesthetics to life. It is also the medium for our learning and social interaction. From my own personal experience as a child with a disability, I know the value of education and learning, which was not only my solace in the darkest hours of my life, but also the medium with which to achieve my full potential. Therefore, I find it unacceptable that even today millions of children in the world are deprived of their right to education and communication, thereby limiting them in their aspirations. It is even more so because hearing loss can both be prevented and can be addressed. The WHO’s World report on hearing shines a strong light on the needs of the nearly 450 million people that need rehabilitation services for their disabling hearing loss. It also provides great insights into how the services can be developed in an equitable manner across the world. On behalf of Rehabilitation International, I appreciate WHO’s ongoing commitment to this hidden disability and we are proud to be contributors to this important report. I sincerely hope that the release of this report will further promote the implementation of the “Prevention of deafness and hearing loss” resolution adopted by the World Health Assembly in 2017, so that all people, including those with hearing loss, can lead healthy and fulfilling lives. Rehabilitation International is fully committed to working together with the World Health Organization in this worthy endeavour. Zhang Haidi President of Rehabilitation International Chairperson, China Disabled Persons’ Federation ixACkNowlEdGEmENts ACKNOWLEDGEMENTS The World Health Organization (WHO) would like to thank the more than 200 report advisors and editors, peer reviewers, WHO staff and other contributors for their support and guidance. Without their dedication, support, and expertise this report would not have been possible. The World Report on Hearing was drafted by Shelly Chadha and Alarcos Cieza, with technical support from Kaloyan Kamenov and Ricardo Martinez, under the overall guidance of Bente Mikkelsen, Director, Department of Noncommunicable Diseases, and Ren Minghui, Assistant Director-General. The development and finalization was made possible through the support of Karen Reyes and Christine Turin Fourcade. The report benefitted from contributions from the following WHO staff: Hala Sakr Ali, Elena Altieri, Islene Araujo de Carvalho, Melanie Bertram, Somnath Chatterji, Chitra Chander, Giorgio Cometto, Neerja Choudhary, Diana Estevez, Gaurav Gupta, Hayatee Hasan, Ivan Dimov Ivanov, Kim Warrick Junsuk, Chapal Khasnabis, Etienne Krug, Teena Kunjumen, Ariane Laplante-Lévesque, Alina Lashko, Maryam Mallick, Satish Mishra, Ellick Narayan, Patanjali Dev Nayar, Alana Officer, Nuria Toro Polanco, Nathalie Roebbel, David Ross, Sarah Russel, Juan Carlos Silva, Karin Stenberg, Gabriella Stern, Yuka Sumi, Emma Tebbutt, and Adriana Velasquez. CONTRIBUTORS EDITORIAL GUIDANCE Jackie Clark, Susan Emmett, Suneela Garg, Linda Hood, Catherine McMahon, Carrie Niemann, Bolajako Olusanya, George Tavartkiladze, Peter Thorne. ADVISORY COMMITTEE AND REVIEWERS Mazin Al Khabori, Kasper Bergmann, Mahmood Bhutta, Abraham Blau, Li-Rong Cheng, Michael Chowen, Carolina Der, John Eichwald, Rachael Hapunda, Kelly King, Frank Lin, Isaac Macharia, Norberto Martinez, Donald Bradley McPherson, Amarilis Melendez, Katrin Neumann, Gerard O’Donoghue, Milan Profant, Diego Santana- Hernández, Lana Shekim, Andrew Smith, Paige Stringer, De Wet Swanepoel, Ruth Warick, Blake Wilson, Jean Wilson. AUTHORS AND REVIEWERS OF BACKGROUND PAPERS Arun Agarwal, Sue Archbold, Agnes Au, David M. Baguley, Elizabeth F. Beach, Melanie Bertram, Mahmood Bhutta, Isabelle Boisvert, Chris Brennan-Jones, Xingkuan Bu, x WORLD REPORT ON HEARING Robert Cowan, Sharon L. Cushing, Adrian C. Davis, Virgil De Mario, Carolina Der, Lauren Dillard, [the late] Robert Dobie, Richard C. Dowell, Susan D. Emmett, Kris English, Harald A. Euler, Melanie Ferguson, Samuel C. Ficenec, Jean-Pierre Gagné, Suneela Garg, René Gifford, Karen A. Gordon, Helen Goulios, Lydia Haile, Wyatte C. Hall, Rachael Hapunda, Howard Hoffman, Elizabeth A-L. Holt, Linda J. Hood, Gitte Keidser, Sarah M. Kortebein, Teena Kunjumen, Ariane Laplante-Lévesque, Judith Lieu, Frank Lin, Lucero Lopez, Isaac Macharia, Norberto Martinez, Ricardo Martinez, David McDaid, Catherine McMahon, Bradley McPherson, Nikki Mills, Thais Morata Johannes Mulder, Wilhelmina Mulders, Joseph Murray, Serah N. Ndegwa, Katrin Neumann, Carrie Niemann, Ian O’Brien, Bolajoko Olusanya, Neelima Panth, Blake C. Papsin, Danielle Powell, William T. Reed, Mariana Reis, John S. Schieffelin, Alan Shan, Sunil D. Sharma, Kristin Snoddon, Mario Svirsky, George Tavartkiladze, Peter Thorne, James Ting, Kelly Tremblay, Alejandra Ullauri, Theo Vos, Ruth Warick, Karl R. White, Warwick Williams, Michael Yong, Christine Yoshinaga-Itano, Robin Youngs. DATA COLLATION, ANALYSIS AND MODELLING Arun Agarwal, Melanie Bertram, Paul Briant, Carolina Der, Somenath Chatterjee, Nathan Green, Tim Jesudason, Lydia Haile, Rachael Hapunda, Institute for Health Metrics and Evaluation (IHME), Ricardo Martinez, David McDaid, Catherine McMahon, Aislyn Orji, A-La Park, Alejandra Rodarte, Jaimie Steinmetz, George Tavartkiladze, David Tordrup, Theo Vos. CONTRIBUTORS TO DISSEMINATION TOOLKIT Paige Stringer with the support of Elena Altieri, Hayatee Hasan, Matt Howick, Karen Reyes, Sarah Russel, and Gabriella Stern. CONTRIBUTORS TO CASE STUDIES AND PHOTOGRAPHS Ratna Anggraeni; Nazmul Bari; Bianca Birdsey; Matt Brady; Karen Mojica (Mayflower Medical Outreach); Ruth Thomsen, Greg Nassar (NHS Audiology Supplies Group and British Academy of Audiology); Kahn Bury; China Research and Rehabilitation Center for Hearing and Speech Impairment; Oh Chunghyeon (CWM hospital, Fiji); Sneha Das Gupta; Janet DesGeorges (Hands & Voices, USA); Raphael Elmiger (Federal Office of Public Health, Switzerland); Susan Emmett; Joaquin Escoto (Ministry of Health of Nicaragua); Gemeinschaft Eltern und Freunde Hörgeschädigter, Austria; Global Coalition of Parents of Children who are Deaf or Hard of Hearing; Rachael Hapunda (Ministry of Health, Zambia); Hear the World Foundation; Italian Pediatric Federation Audiology Network; Government of Japan; Ozlem Konukseven; Nguyen Thi Hong Loan; Cleopa Kilonzo Mailu (Permanent Mission of Republic of Kenya to the United Nations Office and other international organizations, Geneva, Switzerland); Maryam Mallick (WCO Pakistan); Olga Manukhina; Peace Masinde-Mutuma; Otto Mejia; Shadrack Mngemane (The Aurum Institute, South Africa); National Association xiACkNowlEdGEmENts of Parents of Deaf Children, Uganda; Mouna Sakly (Ministry of Health of Tunisia); Diego Santana (CBM International); Seema Rupani Shah (SNR Hearing Centre, Kenya); Sandhya Singh (National Department of Health, South Africa), Snigdha Sarkar (Anwesha Kolkata, India); Wendy Dawn Snowdon; Sound Hearing International; Starkey Hearing Foundation; Paige Stringer (Global Foundation For Children With Hearing Loss); George Tavartkiladze (National Research Centre for Audiology and Hearing Rehabilitation, Moscow, Russian Federation); Glyn Vaughan (All Ears Cambodia); Ruth Warick (International Federation of Hard of Hearing People). OTHER CONTRIBUTORS Members of the World Hearing Forum: Luke Alexander, Sue Archbold, Kasper Bergmann, Bianca Birdsey, Jeanette Blom, Ora Buerkli, Lise Lotte Bundesen, Patricia Castellanos de Muñoz, Michael Chowen, Jackie Clark, John Eichwald, Susan Emmett, Alison End Fineberg, Suneela Garg, Linda Hood, Julia Ligeti, Isaac Macharia, Norberto Martinez, Catherine McMahon, Katrin Neumann, Alana Nichols, Carrie Niemann, M Kathleen Pichora-Fuller, Ann Porter, Milan Profant, Audra Renyi, Diego Santana, Paige Stringer, George Tavartkiladze, Bowen Tang, Peter Thorne, Elena Torresani, Ruth Warick, Stephen Williamson, Lena Lai Nar Wong, Lidia Zabala. CITATION MANAGEMENT Chitra Chander, Arunda Malachi, Kai Nash, and Azhar Rahman. DESIGN CONCEPT AND LAYOUT Inis Communication COVER DESIGN CONTRIBUTION Ricky Kej, Howdy Pardners WHO also wishes to acknowledge the following organizations for their generous financial support in the development, publication and dissemination of the World report on hearing: CBM International; Centers for Disease Control and Prevention, USA; Mr Michael Chowen, United Kingdom; International Society of Audiology; National Institute on Deafness and Other Communication Disorders, USA; and Rehabilitation International. xii WORLD REPORT ON HEARING ABBREVIATIONS AABR automated auditory brain response ABR auditory brainstem response AOM acute otitis media APD auditory processing disorder APGAR method of scoring to measure the physical condition of a newborn ARHL age-related hearing loss ASHA American Speech Language & Hearing Association ASOM acute suppurative otitis media ASSR auditory steady-state response CART communication access realtime translation CCAC Collaborative for Communication Access via Captioning CDC Centres for Disease Control and Prevention (United States) CMA community health aide/agent CHW community health worker CMV cytomegalovirus CSOM chronic suppurative otitis media DALY disability-adjusted life year dB decibel dBA A-weighted decibel D/HH deaf/hard-of-hearing DLU Deaf Link Uganda DR-TB drug-resistant tuberculosis DST dexamethasone suppression test DTC direct-to-consumer/customer EHC ear and hearing care xiiiABBREVIAtIoNs EHDI early hearing detection and intervention ENT ear, nose and throat FDA Food and Drug Administration (United States) FLIP Family-centred Early Intervention Program (Austria) FM frequency modulation FRESH Focusing Resources on Effective School Health GBD global burden of disease GDP gross domestic product GP general practitioner HHL hidden hearing loss HIV human immunodeficiency virus Hz Hertz measurement of sound vibration frequency ICF International Classification of Functioning, Disability and Health IPC-EHC integrated people-centred ear and hearing care ITU International Telecommunication Union MDR-TB multidrug-resistant tuberculosis MHMS Ministry of Health and Medical Services (Fiji) MoH Ministry of Health NGO nongovernmental organization NHSP Newborn Hearing Screening Program (Israel) NICU neonatal intensive care units NIHL noise-induced hearing loss NSOM nonsuppurative otitis media OAE otoacoustic emission OM otitis media OME otitis media with effusion OTC over-the-counter PCV pneumococcal conjugate vaccine PEHC primary ear and hearing care WORLD REPORT ON HEARING PEHC-TR primary ear and hearing care training resources PSAP personal sound amplification product PTA pure tone audiometry QALY quality-adjusted life year QOL quality of life RAHL rapid assessment of hearing loss RCT randomized control trial SDG Sustainable Development Goal SFHA self-fitting hearing aids SLT speech-language therapist SSNHL sudden sensorineural hearing loss STT speech-to-text STTI speech-to-text-interpreting STTR speech-to-text-reporting TEOAE transient-evoked otoacoustic emission UN United Nations UNCRPD United Nations Convention on Rights of Persons with Disabilities UNHS universal newborn hearing screening USA United States of America VA Veterans Affairs (USA) WHA World Health Assembly WHO World Health Organization WHF World Hearing Forum WISN Workforce Indicator for Staffing Needs (WHO) YLD years lived with disability xiv ABBREVIAtIoNs xv xvi WORLD REPORT ON HEARING © H ea r t he W or ld F ou nd at io n Hearing care for all! 1INtRodUCtIoN INTRODUCTION The World report on hearing envisions a world in which no individual experiences hearing loss due to preventable causes, and those with hearing loss can achieve their full potential through rehabilitation, education and empowerment. Hearing is the sense with which we perceive the sounds around us; through hearing we engage with our environment, communicate with others, express our thoughts, and gain education. Globally more than 1.5 billion people experience some decline in their hearing capacity during their life course, of whom at least 430 million will require care. Loss of hearing, if not identified and addressed, can have far-reaching consequences, adversely affecting language development, psychosocial well-being, quality of life, educational attainment and economic independence at various stages of life (1–3). Unaddressed, hearing loss imposes a global cost of more than $ 980 billion annually, and potentially risks the global goal of United Nations Member States to end poverty and ensure that all people on this planet enjoy peace and prosperity by 2030 (4, 5). Many causes of hearing loss can be prevented. Common ear diseases, ear infections, vaccine-preventable illnesses, and exposure to noise and chemicals, endanger the hearing of many people at different ages. The World Health Organization (WHO) estimates, for example, that more than 1 billion young people put themselves at risk of permanent hearing loss, often unknowingly, by listening to music at loud intensity over long periods of time. Mitigating such risks through public health action is essential to addressing hearing loss. Across the life course, people with ear conditions or hearing loss can benefit greatly from effective and available interventions. The past few decades have © H ea r t he W or ld F ou nd at io n 2 WORLD REPORT ON HEARING seen game-changing advances in the field of hearing technology, diagnostics and telemedicine with innovations that enable ear diseases and hearing loss to be identified at any age and in any setting. Medical and surgical management, hearing aids, cochlear implants, rehabilitative therapy, sign language and captioning are solutions which can ensure that people with ear diseases or hearing loss access education and communication and thereby have the opportunity to fulfil their potential. Despite the existence and effectiveness of these interventions, the vast majority of those in need do not have access to them. Most people with hearing loss live in low-income settings where human resources and services for ear and hearing care are not commonly accessible. To address this, in 2017, the World Health Assembly adopted resolution WHA70.13 (6) which urges governments to integrate ear and hearing care into their national health system framework and instructs WHO to provide the evidence and tools for them to do this. The World report on hearing was developed with the key purpose of promoting global action for equitable access to ear and hearing care in all settings across the world. The report provides clear evidence to target hearing loss as a global public health priority and outlines the H.E.A.R.I.N.G. package of interventions that countries should prioritize, taking into account their national circumstances. The many challenges facing countries in these endeavours are outlined in the report. Challenges have further intensified during the COVID-19 pandemic, which has exposed the fragility of current health systems and focused attention on the need to invest in health care as a means to safeguard the world’s populations in the future. As governments and public health agencies begin the task of building better, future-proofed health systems, lessons must be learnt, and the vision of universal health coverage realized. Public health action must take into account the ongoing demographic changes: a rise of more than 1.5-fold in hearing loss is anticipated in the coming decades. Through prioritizing hearing loss and integrating hearing care within the systems, WHO Member States can ensure that ear and hearing care services are accessible as part of universal health coverage, delivered through national health systems. Definitive action is required to deliver not only on the mandate of resolution WHA70.13, but also the relevant Sustainable Development Goals (SDGs): SDG3 (good health and well-being); SDG4 (quality education); SDG8 (decent work and economic growth); and SDG10 (equality). In 2015, when countries adopted the new agenda for sustainable development in the form of 17 goals, they pledged to leave no one behind. They recognized that ending poverty must be supported by strategies to both build economic growth and to address a range of social needs including education, health, social protection and job opportunities. 3INtRodUCtIoN Through the World report on hearing, the World Health Organization highlights the need for, and means of, promoting ear and hearing care to serve the SDG agenda and its relevance for everyone irrespective of age, nationality or hearing status. The report calls upon Member States to initiate affirmative action that both includes, and addresses, the needs of those living with ear diseases and hearing loss, as well as the populations at risk of these conditions. It also invites civil society, developmental public health agencies, professional societies, health-care providers and researchers to respond to this global call so that all people can enjoy good hearing as part of good health and well-being throughout their life course. GOALS AND OBJECTIVES OF THE REPORT The overarching goals of the report are to make ear and hearing care a global public health priority through presenting its relevance across the life course, and to define a public health approach for addressing this form of care from the prenatal stage to adulthood and into older age. The objectives outlined in the report include: • establishing hearing loss across the life course as a public health priority among policy-makers; • drawing attention to the existing solutions to prevent and rehabilitate hearing loss, as well as the challenges in their delivery and access; • documenting scientific evidence and country experiences on the approaches to build integrated people-centred ear and hearing care services, delivered through national health systems; and • making recommendations and setting targets that stimulate country-level action for improved access to ear and hearing care, through integration of the H.E.A.R.I.N.G. package of interventions as part of universal health coverage. 4 WORLD REPORT ON HEARING DEVELOPMENT OF THE REPORT The World report on hearing was prepared through a consultative and evidence-based process; its structure, content and recommendations were guided by stakeholders in the field of hearing. After determining the structure, WHO identified information needs and engaged with a wider group of researchers to develop and review background papers based on reviews of literature. Information from these papers was used to inform and shape the text of the report. Estimations of prevalence, years lived with disability, and future projections were made in collaboration with the Global Burden of Disease study of the Institute of Health Metrics and Evaluation.1 Data were collated from surveys from Member States and consultations held across all six WHO regions during the past two years. Economic analyses were also undertaken to better understand the financial implications of hearing loss and the benefits of ear and hearing care. Examples, case stories and photographs were sourced from, or contributed by, governmental and nongovernmental partners across the world. Member States were consulted through an open web-based consultation and their feedback sought on the final draft version. The list of priority interventions was identified through a consultative process and further refined through extensive reviews of literature, assessment of effectiveness and cost–effectiveness. Development was carried out in close collaboration with different WHO departments and the final draft reviewed by the stakeholders. The quality of evidence was assessed and is documented in WEB ANNEX A of the report. To ensure inclusivity of opinion, webinars were held to share information with all those interested; these were open to anyone who wished to attend. The entire process was aimed at developing a report based on evidence, while being grounded in reality and reflecting real-life experiences that are not always captured in peer- reviewed literature. NEXT STEPS Following the launch, the World report on hearing, will be widely disseminated to promote implementation of its recommendations by WHO Member States. WHO will provide technical support and where required, develop evidence-based guidance to facilitate Member States’ response. 1 See: http://www.healthdata.org/gbd/2019 5INtRodUCtIoN REFERENCES 1. Olusanya BO, Neumann KJ, Saunders JE. The global burden of disabling hearing impairment: a call to action. Bull World Health Organ. 2014;92(5):367–73. 2. Nordvik Ø, Laugen Heggdal PO, Brännström J, Vassbotn F, Aarstad AK, Aarstad HJ. Generic quality of life in persons with hearing loss: a systematic literature review. BMC Ear Nose Throat Disord. 2018;18:1. 3. Shield B. Evaluation of the social and economic costs of hearing impairment. Hear-it AISBL; 2006. 4. World Health Organization. Global costs of unaddressed hearing loss and cost– effectiveness of interventions. Geneva: Switzerland; 2017. 5. United Nations. Transforming our world: the 2030 agenda for sustainable development. General Assembley 70 session. Available at: https://www.unfpa.org/sites/default/files/ resource-pdf/Resolution_A_RES_70_1_EN.pdf; 2015 , accessed January 2021. 6. World Health Organization. WHA.70.13. World Health Assembly resolution on prevention of deafness and hearing loss. In: Seventieth World Health Assembly, Geneva, 31 May 2017. Resolutions and decisions, annexes. Available at: http://apps.who.int/gb/ ebwha/pdf_files/WHA70/A70_R13-en.pdf?ua=1 , accessed January 2021. Societal change can mitigate the impact of hearing loss: a case study from India* *Contributed by Anwesha Kolkatta. See: https://anweshakolkata.org/en_US/ © S ni gd ha S ar ka r, An aw es ha K ol ka ta As a deaf child I struggled a lot when I was in school. My mother tells me that despite the adjustment with hearing aids, going to therapy and learning to hear and speak, I managed quite well in the early years with the help from my teachers. But things became really tough when I had to start learning languages other than my mother tongue. I depend on my hearing aids and lip reading to understand what others say and trying to do so in three languages was nearly impossible. Even though the national Disabilities Act makes an exception for deaf children, this ‘single language right’ was not applicable where I lived. My parents did their best to support me in what seemed an impossible battle with my books. Seeing my daily struggles and that of other deaf children, my mother, an active member of a parents’ association decided to take action. Petitions were filed with the government and in courts, but the matter dragged on for years, while I finished schooling and joined university. I became a member of a youth self-advocacy group called ‘Bondhu’ and we decided to join our parents in this fight. Once we spoke up for ourselves and explained our point of view, we noticed a new realization dawn among the officials. Finally, after five years of struggle, deaf children were granted the right of learning one language. Even though I cannot benefit from this, I know that this will help other deaf children continue their education and achieve their goals. The experience made me realize the power of speaking out and that as people with hearing loss; we must ourselves become agents of societal change. Sneha Das Gupta, PhD student, India 8 WORLD REPORT ON HEARING 9sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE SECTION 1 THE IMPORTANCE OF HEARING ACROSS THE LIFE COURSE 2 In this report, the terms “hearing loss” and “hearing impairment” are used interchangeably. The sense of hearing is a key aspect of functioning at all stages of life: its loss, unless appropriately addressed, impacts society as a whole. 1.1 OVERVIEW O Each individual has a unique hearing trajectory that is shaped by diverse influences experienced throughout the life course; these include genetic characteristics, and biological, behavioural and environmental factors. O The course of the hearing trajectory determines a person’s hearing capacity at any point during their life. Causative and protective factors influence hearing capacity. O Although factors influencing hearing capacity can be encountered at different periods of a person’s life, some factors are more likely to be experienced – or individuals may be most susceptible to their effects – at specific points in life. O Section 1 describes the causative and protective influences encountered during the prenatal period through to older age, with emphasis placed on those most relevant to public health. O Hearing capacity is commonly measured using pure tone audiometry and classified based on the audiometric hearing thresholds. Any decline in hearing capacity is referred to as hearing loss or hearing impairment2 which may range in severity from mild to complete. 10 WORLD REPORT ON HEARING O Globally more than 1.5 billion people experience some degree of hearing loss. Of these, an estimated 430 million have hearing loss of moderate or higher severity in the better hearing ear. Prevalence of hearing loss varies across WHO regions; the vast majority of people affected live in low- and middle-income countries of the world. O The impact of hearing loss on a person is determined not only by the severity and profile of the loss, but also largely on whether the hearing loss is addressed by effective clinical or rehabilitative interventions, and the extent to which the environment is responsive to the person’s needs. O If unaddressed, hearing loss can negatively impact many aspects of life: communication; the development of language and speech in children; cognition; education; employment; mental health; and interpersonal relationships. Hearing loss can cause low self-esteem, is often associated with stigma, and can significantly impact the families and communication partners of those living with the condition. O Globally, unaddressed hearing loss poses an annual cost of over $ 980 billion.3 This includes costs related to health care, education, productivity losses, and societal costs. Many of these costs can be mitigated through the use of cost–effective interventions, as described later in the report. Hearing is a key component of human intrinsic capacity; it is the sense most relied upon to communicate and engage with others. Any decline in hearing capacity at any point during the life course, if not addressed in a timely manner, can adversely affect day-to-day functioning (1, 2). Section 1 highlights these factors and explores the impact of unaddressed hearing loss on those affected, their families and society as a whole. 3 Unless otherwise specified, the use of “dollars” or “$” throughout the report refers to the International dollar. 11sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE Multiple factors interact to determine the development of one’s hearing trajectory across the life course. 1.2 HEARING ACROSS THE LIFE COURSE During the course of their lifetime, humans are exposed to multiple risk and protective factors that contribute to their overall hearing capacity (3). The life course model for health development considers health as an emergent capacity that develops dynamically over time (4, 5). This model considers health – including hearing – as being affected by multiple factors which range from genetic and biological to psychosocial and economic (3, 5). Adopting a life-course approach allows the preservation of hearing to be viewed as an important goal, and hearing loss not as a single event or occurrence, but as an outcome of factors experienced from the prenatal period through childhood and adulthood (3, 6) and into older age.4 This provides opportunities for intervention, in the form of prevention, identification, treatment and rehabilitation, across the life course, Hearing throughout a person’s life can be visualized in the form of a trajectory (the hearing trajectory), the course of which determines our hearing capacity at any point in time. An individual’s hearing trajectory depends on the baseline capacity at birth, and the multiple risk or preventive factors encountered during the life course (3, 6), as described in Figure 1.1. The mechanism by which hearing occurs in the ear is illustrated in Figure 1.2. 4 The age ranges used in the World report on hearing are: perinatal period, 0–4 years; childhood and adolescence, 5–17 years; adulthood, 18–64 years; older adults, 65 years and above. An individual’s hearing trajectory is determined by the baseline hearing capacity at birth along with the diverse causative and protective influences experienced throughout the life course (3). 12 WORLD REPORT ON HEARING Genetic factors Meningitis and other infections Hypoxia or birth asphyxia Low-birth weight Otosclerosis Smoking Otitis media Perinatal morbidities Exposure to noise/loud sounds Ototoxic medicines Age-related sensorineural degeneration Nutritional deficiencies Trauma to the ear or head Work related ototoxic chemicals Hyperbilirubinemia Causative factors Hearing capacity Protective factors Maternal nutrition Maternal hygiene Breastfeeding Good ear hygiene Immunization Protection against head or ear injury Avoiding loud sounds and noise Healthy lifestyle Good nutrition Figure 1.1 Hearing across the life course 1.2.1 DETERMINANTS OF HEARING CAPACITY It is evident that many determining factors of the hearing capacity – genetic, biological, psychosocial and environmental – experienced at different stages of life, influence the ears and can either lead to hearing loss or protect against it. Many ear conditions, such as otitis media, are treatable, and many causes of hearing loss – nutrition, ear hygiene and loud noise, for example – can be avoided by taking preventive actions at a personal level. Both causative and preventive factors interplay to determine the occurrence, nature, severity and progression of hearing loss, thus the hearing capacity of an individual is determined by: (3) 1. Baseline hearing capacity at birth. 2. Exposure to, or presence of, causative factors (genetic, biological, behavioural or environmental). 3. Protective actions mitigating the risk factors. 1.2.2 CAUSATIVE FACTORS OF HEARING LOSS Although these factors can be encountered at different periods across the life span, individuals are most susceptible to their effects during critical periods in life, such as before birth or in the first years of life – a period of physiological development and 13sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE Figure 1.2 The hearing mechanism Sounds travel through the outer part of the ear to strike and set into vibration the tympanic membrane (eardrum). These vibrations are transmitted through the three ossicles (bones) in the middle ear to the cochlea in the inner ear. The outer and middle ears serve to amplify the sound vibrations setting into motion the fluid contained within the cochlea. This movement is transduced by hair (sensory) cells within the cochlea to an electrical, nervous impulse that is transmitted by the auditory nerve to the brain where it is perceived as sound (7). Outer ear Temporal bone External Auditory Canal Tympanic membrane Auditory ossicles Eustachian tube Semicircular canals Vestibulocochlear nerve Cochlea Genetic factors Meningitis and other infections Hypoxia or birth asphyxia Low-birth weight Otosclerosis Smoking Otitis media Perinatal morbidities Exposure to noise/loud sounds Ototoxic medicines Age-related sensorineural degeneration Nutritional deficiencies Trauma to the ear or head Work related ototoxic chemicals Hyperbilirubinemia Causative factors Hearing capacity Protective factors Maternal nutrition Maternal hygiene Breastfeeding Good ear hygiene Immunization Protection against head or ear injury Avoiding loud sounds and noise Healthy lifestyle Good nutrition maturation for the hearing system and critical for language acquisition (3). The impact of risk factors for hearing loss is also higher in older age groups when neurogenerative changes set in. However, the decline in hearing experienced at this age is not a simple, inevitable, degenerative process associated with growing old: it is the outcome of genetic influences, health conditions, lifestyle and environmental experiences that are embedded in the physiological system of hearing (6) and have influenced it during the course of life. Certain health conditions or environmental influences are more likely to be experienced at specific stages of the life course; these are detailed in the time period they are considered most relevant (Table 1.1). Factors that may be encountered at any point, or equally, at all stages of life are listed in Table 1.2 (3, 8–10). In addition to the information provided in the tables, three specific factors that can lead to hearing loss are highlighted: otitis media; exposure to loud noise; and age- related hearing loss. These are considered especially relevant from a public health perspective, mostly due to their high prevalence in the community or their well- established preventive and therapeutic mechanisms. Factors that influence the hearing trajectory: Genetic characteristics Biological factors – e.g. health conditions or diseases Behavioural factors – e.g. lifestyle choices Environmental factors 14 WORLD REPORT ON HEARING Table 1.1 Causative factors that lead to hearing loss across the life course GENETIC FACTORS These include 11 syndromes currently identified as being associated with hearing loss, including Usher’s syndrome, Alport syndrome, Pendred syndrome among many others (11). Consanguinity refers to marriage between close biological relatives, and may be associated with higher incidence of congenital problems (12). INFLUENCE ON HEARING Over 250 genes are associated with syndromic and nonsyndromic types of hearing loss, which are commonly hereditary in nature. These include autosomal dominant, autosomal recessive and X-linked genes (11). IMPORTANT CONSIDERATIONS Genetic hearing loss is encountered more frequently in children born to consanguineous parents (12–15). Consanguineous marriages are a common tradition in many communities across the world, where such unions collectively account for 20–50% of all marriages (12, 14, 16, 17). Syndromic hearing loss is accompanied by additional clinical features in the visual, nervous system, endocrine and other systems (18, 19). RELATED STATISTICS Genetic factors are responsible for over 50% of hearing loss encountered in neonates (18), and account for nearly 40% of childhood hearing loss (20). Syndromic factors account for 15% of neonatal hearing loss, while nonsyndromic hearing loss accounts for the remaining 35% (18). INTRAUTERINE INFECTIONS Infections contracted by the mother during the intrauterine period which can lead to hearing loss. These include viral, bacterial and parasitic pathogens. Congenital infections commonly associated with hearing loss include: • Toxoplasmosis • Rubella • Cytomegalovirus (CMV) • Herpes simplex virus type 1 and 2 • Human immunodeficiency virus • Lymphocytic choriomeningitis virus • Zika virus • Syphilis INFLUENCE ON HEARING Most commonly associated with congenital sensorineural hearing loss which varies from moderate to profound and in some cases, with auditory processing disorders such as toxoplasmosis (21–23). At times, hearing loss may develop in the early months or years of life, as with, for example cytomegalovirus infection. IMPORTANT CONSIDERATIONS Presentation may be accompanied by other features of disease: Clutton’s joints or Mulberry molars for example, in cases of congenital syphilis (24); sequelae of congenital zika syndrome (25); or cardiac or eye abnormalities associated with CHARGE syndrome in congenital rubella (23) depending on the cause. RELATED STATISTICS Viral infections cause up to 40% of all non-genetic congenital hearing loss (22). Cytomegalovirus infection is a common cause, resulting in hearing loss in 14% of infants born to affected mothers. Of these infants, 3–5% have bilateral moderate to profound hearing loss (26). Of infants with congenital zika syndrome, 6–68% have hearing loss. Hearing loss is the most common sequelae of congenital rubella infection, occurring in 12–19% of those affected (22). PRENATAL PERIOD 15sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE Table 1.1 Causative factors that lead to hearing loss across the life course HYPOXIA OR BIRTH ASPHYXIA (27–30) Lack of adequate oxygenation experienced at time of birth. This commonly manifests as a low APGAR score which is assessed in the minutes immediately following birth. INFLUENCE ON HEARING Severe hypoxia or anoxia experienced at the time of birth leads to irreversible cellular damage in the cochlea, with consequent sensorineural hearing loss. IMPORTANT CONSIDERATIONS The risk is higher in neonates that require assisted ventilation for neonatal respiratory failure. RELATED STATISTICS No available data. HYPERBILIRUBINEMIA (27, 31) An increase in the serum bilirubin levels, also commonly known as jaundice. INFLUENCE ON HEARING Neonatal jaundice is a frequent occurrence, and is mostly mild and transient, with no long-lasting sequelae. However, bilirubin-induced neurologic damage may occur in some infants and the auditory system is most sensitive to its effects. Such damage most commonly occurs within the auditory nerve or brainstem, often manifesting as an auditory neuropathy spectrum disorder. IMPORTANT CONSIDERATIONS Risk is greatest in infants with bilirubin levels higher than 20 mg/dL. The hearing of premature infants is more susceptible to the toxic effects of bilirubin. RELATED STATISTICS No available data. LOW-BIRTH WEIGHT (18, 27, 32) A birth weight of below 1500 g, as a result of premature birth or maternal undernutrition. INFLUENCE ON HEARING Low birth weight is a well identified risk factor for hearing loss. It is likely that while low weight itself may not have an impact on hearing, it is commonly associated with multiple risk factors, such as ototoxic medicines, hypoxia and hyperbilirubinemia, that act synergistically leading to hearing loss. IMPORTANT CONSIDERATIONS Infants with very low birth weight may at times have conductive hearing loss due to transient middle ear effusion. RELATED STATISTICS No available data. OTHER PERINATAL MORBIDITIES AND THEIR MANAGEMENT (18 , 27, 29) Includes perinatal infections and use of ototoxic medicines. INFLUENCE ON HEARING Certain infections occurring in the newborn period may be due to pathogens that have a direct effect on the auditory system (e.g. CMV infection and meningitis). Hearing loss can also be the result of ototoxic medicines used to treat these infections. IMPORTANT CONSIDERATIONS It is observed that infants managed in neonatal intensive care units (NICU) have a significantly higher likelihood of developing hearing loss, mainly as a result of the underlying conditions (e.g. prematurity or hyperbilirubinemia); use of ototoxic medicines; and exposure to high noise levels in the NICU (where decibel (dB) levels may range to 120) (33). RELATED STATISTICS No available data. PERINATAL PERIOD 16 WORLD REPORT ON HEARING OTITIS MEDIA* (34–40) This includes a range of suppurative and nonsuppurative ear conditions characterized by inflammation of the middle ear. INFLUENCE ON HEARING Chronic otitis media is commonly associated with mild to moderate conductive hearing loss as a result of disruption in transmission of sound vibrations through the middle ear due to the accumulated fluid, ruptured ear drum or erosion of middle ear ossicles (bones). It may, at times, lead to sensorineural or severe hearing loss. IMPORTANT CONSIDERATIONS Otitis media is a leading cause for health care visits and morbidity, especially in children. Suppurative otitis media may be associated with life-threatening complications. RELATED STATISTICS An estimated 98.7 million people or more, are affected by hearing loss (mild or greater) as a consequence of acute and chronic suppurative otitis media. (41) *Further information is provided on page 23. MENINGITIS AND OTHER INFECTIONS (18, 42, 43) Infections common in childhood, such as measles, mumps and meningitis. Other pathogens that can lead to permanent hearing loss include: • Borrelia burgdorferi • Epstein-Barr virus • Haemophilus influenzae • Neisseria meningitidis • Non-polio enteroviruses • Plasmodium falciparum • Streptococcus pneumoniae • Varicella zoster virus INFLUENCE ON HEARING The mechanism has not always been well studied and could vary from middle ear effusion, caused by the infection, to auditory damage. In meningitis for example, it is likely that spread of inflammation to the inner ear results in labyrinthitis and cochlear cell damage. Damage to the auditory nerve due to inflammation or ischemia is another possibility. IMPORTANT CONSIDERATIONS Hearing loss varies in severity and nature and can be unilateral or bilateral. Post-meningitic hearing loss can be unilateral or bilateral, severe or profound, and may deteriorate over time. RELATED STATISTICS Meningitis may be responsible for 6% of sensorineural hearing loss in children (18). Overall, an estimated 14% of those infected with these pathogens may suffer hearing loss, of which 5% can be profound. CHILDHOOD AND ADOLESCENCE 17sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE CHRONIC DISEASES (6, 8, 44, 45) Commonly encountered health conditions such as hypertension, diabetes and central adiposity. INFLUENCE ON HEARING It is not clear yet whether chronic disease denotes a possible causal relationship or only a correlation due to shared biological processes. Nevertheless, persons with these conditions are at greater risk of hearing loss. IMPORTANT CONSIDERATIONS Persons with chronic health conditions such as those enumerated need vigilance, with the aim of early identification and rehabilitation. RELATED STATISTICS Can contribute to the overall prevalence of hearing loss. SMOKING (46–49) Tobacco smoke, commonly inhaled through smoking cigarettes. Exposure to cigarette smoke clearly increases an individual’s risk of hearing loss. INFLUENCE ON HEARING Hearing loss could be due to the antioxidative and vascular effects of cigarette smoke; or the direct ototoxic effect that may affect neurotransmission of auditory stimuli. IMPORTANT CONSIDERATIONS Includes persons exposed to second-hand smoke. It is noteworthy that the excess risk of hearing loss disappears in a relatively short period after quitting smoking. RELATED STATISTICS Can contribute to the overall hearing loss prevalence. OTOSCLEROSIS (50–52) Abnormal bone growth inside the ear of unknown cause, with possible genetic and environmental influences. INFLUENCE ON HEARING The abnormal bone growth commonly affects the Stapes (one of the ear ossicles), but in some cases also extends to the cochlea. It can cause conductive, mixed or sensorineural hearing loss. IMPORTANT CONSIDERATIONS Although not a common disease, otosclerosis can often be managed effectively through surgical and non-surgical means, including the use of hearing aids. ADULTHOOD AND OLDER AGE 18 WORLD REPORT ON HEARING AGE-RELATED SENSORINEURAL DEGENERATION* (6, 8, 53–57) Degenerative changes to the structures within the ear, associated with ageing. Over 65% of adults above 60 years of age experience hearing loss. INFLUENCE ON HEARING Degenerative changes affect the ability of the inner ear and higher centres to process and discriminate acoustic signals, presented as difficulty in hearing some sounds and discriminating speech. IMPORTANT CONSIDERATIONS Age-related hearing loss is a multifactorial condition influenced by genetic factors that determine the rate and extent of neural degeneration, pre-existing ear conditions, chronic illnesses, noise exposure, use of ototoxic medicines and lifestyles. RELATED STATISTICS The Global Burden of Disease estimates for 2019 suggest that over 65% of persons aged more than 60 years of age experience some degree of hearing loss, and this is of moderate or higher grade in nearly 25% of this age group. Studies show that prevalence of hearing loss doubles in the USA during every decade of life from the second to the seventh decade (58, 59), with the sharpest rises occurring in those aged more than 80 years (6, 48). *Further information is provided on page 28. SUDDEN SENSORINEURAL HEARING LOSS (SSNHL) (60, 61) Rather than being a cause for hearing loss, sudden sensorineural hearing loss is a unique presentation of hearing loss onset. NON-MODIFIABLE RISK FACTORS (45, 62, 63) Includes: • Syndromes associated with progressive hearing loss, such as Usher’s syndrome and neurofibromatosis; and neurodegenerative disorders e.g. Hunter’s, Friedreich’s ataxia • Gene mutations that commonly manifest in later life (i.e. from childhood to old age) • Gender • Race INFLUENCE ON HEARING • The mechanism of genetic factors varies according to the gene affected and its expression or the relevant syndrome. • Men are more prone to hearing loss, mainly due to their higher engagement in activities associated with noise-induced hearing loss (64, 65), and because of the positive influence of estrogen on hearing functions among women. Since the hearing sensibility is correlated with the level of estrogen, women are more protected against hearing loss until menopause (66). • Racial differences in the cochlear pigmentation have been associated with hearing loss risk. Melanin pigmentation – significantly more abundant in the cochleae of African-Americans than those of Caucasians – underlies the decreased risk of age- related hearing loss in those of African origin Americans (67). IMPORTANT CONSIDERATIONS More than 100 genes and their known mutations associated with hearing loss are described in literature. Many others are known to cause syndromic hearing loss. Late onset, or progressive, hearing loss associated with some of these conditions, is commonly missed during early childhood screening. RELATED STATISTICS No available data. FACTORS ACROSS THE LIFE SPAN 19sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE CERUMEN IMPACTION (IMPACTED EAR WAX) (68–71) Cerumen is a secretion produced by the ceruminous glands in the outer ear. It is sticky, waterproof and protective in nature, with bactericidal and fungicidal properties. Cerumen traps and removes dead skin cells, dust and other materials from the external ear. At times, the cerumen accumulates and dries, forming a hard plug of impacted wax in the external ear. INFLUENCE ON HEARING Cerumen can completely occlude the ear canal, leading to hearing loss due to the mechanical obstruction to sound waves. This may lead to small shifts (5–10 dB) in the hearing thresholds (69). The auditory effect of cerumen impaction is more marked in persons who already have an underlying hearing loss, as even a small additional impairment can cause significant problems in functioning (69). Furthermore, hearing loss due to cerumen may worsen suddenly, if water is absorbed, e.g. during swimming or showering (69). IMPORTANT CONSIDERATIONS Wax impaction is aggravated by the use of cotton- tipped swabs (e.g. Q-tips) that are commonly used to “clean” the ear canal. The use of aids may obstruct the normal movement and extrusion of wax, leading to its accumulation. RELATED STATISTICS The prevalence of wax impaction varies across age groups, from 7–35%. Prevalence is higher in older adults, with 57% possibly being affected, most likely as a result of increased skin dryness and shedding. Some 10% of children and 5% of adults have impacted cerumen. Over 50% of older adults may be affected. TRAUMA TO THE EAR OR HEAD (72, 73) Hearing loss as a consequence of trauma to the ear and head. Such trauma may be accidental, intentional or iatrogenic (due to surgery of the ear or head). INFLUENCE ON HEARING The impact on hearing may be caused by: • Disruption on the conductive mechanism of the ear: injury over the ear (e.g. slaps, falls on the ear, insertion of objects into the ear canal) can cause perforation of the tympanic membrane (eardrum), or dislocation of bones within the ear. This can lead to conductive type of hearing loss which can often be corrected through surgery. • Cochlear or nerve injury: fractures of the temporal bone, or brain injuries, can result in trauma of the auditory nerve resulting in sensorineural type of hearing loss. IMPORTANT CONSIDERATIONS Traumatic hearing loss can be part of polytrauma. Communicating with polytrauma patients with hearing loss requires special attention. RELATED STATISTICS No available data. FACTORS ACROSS THE LIFE SPAN 20 WORLD REPORT ON HEARING LOUD NOISE/LOUD SOUNDS* (55, 64, 74–87) Exposure to loud noise or loud sounds, which include: • Occupational noise • Recreational sounds • Environmental noise INFLUENCE ON HEARING Prolonged or regular exposure to loud sounds can cause permanent damage to the hair cells and other structures within the cochlea, resulting in irreversible hearing loss. The high frequency range is affected first. Continued exposure leads to progression of hearing loss. IMPORTANT CONSIDERATIONS In addition to hearing loss, noise exposure can lead to other noise-induced health problems such as insomnia or cardiovascular illnesses. RELATED STATISTICS It is estimated that approximately 16% (7–21% across different regions) of hearing loss in adults results from exposure to excessive noise in the workplace (76) which is responsible for over 4 million disability adjusted life years (DALYs). Of persons aged 12–35 years, 50% are at risk of hearing loss due to exposure to unsafe levels of sounds in recreational settings. *Further information is provided on page 25. OTOTOXIC MEDICINES (88–90) Drugs with the potential to cause ototoxicity (of which there are more than 600 categories). Those most commonly used in clinical practice include: • aminoglycoside and macrolide antibiotics (e.g. gentamycin, streptomycin) • quinoline antimalarials (quinine) • platinum analog antineoplastics (e.g. cisplatin) • loop diuretics (e.g. furosemide, acetylsalicylic acid) INFLUENCE ON HEARING Hearing loss may result from the cochleotoxic or neurotoxic effects of ototoxic medicines. In many cases, damage is to cochlear hair cells and results in sensorineural hearing loss, which is commonly permanent. IMPORTANT CONSIDERATIONS Ototoxic hearing loss onset and severity are commonly dose-dependent and cumulative, they are also affected by many other factors, such as age, gender, genetic susceptibility, comorbid conditions, alcohol intake, smoking, diet, exercise, stress, type of drug, route of administration, duration of therapy, exposure to other ototoxic chemicals, noise exposure, and pre-existing hearing loss. RELATED STATISTICS Incidence of ototoxic hearing loss is estimated to be 63% with aminoglycosides and 6–7% with furosemide. Cisplatin has been shown to cause tinnitus and hearing loss in 23–50% of adults and up to 60% of children receiving it. Up to 50% of those treated with injectable medicines (e.g. Amikacin and Streptomycin) for drug-resistant tuberculosis (DR-TB), could develop permanent hearing loss. FACTORS ACROSS THE LIFE SPAN 21sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE WORK RELATED OTOTOXIC CHEMICALS (91, 92) Chemicals encountered in many occupations, especially those relating to printing, painting, boat- building, construction, glue manufacturing, metal products, chemicals, petroleum, leather products, furniture-making, agriculture, and mining. Commonly used chemicals include: • aromatic solvents (e.g. toluene) • non-aromatic solvents (e.g. trichloroethylene, a cleaning and degreasing agent) • Nitriles (e.g. those used for preparation of melamine resins) • Asphyxiants (e.g. carbon monoxide and hydrogen cyanide found in exhaust fumes) • Metals and metal compounds (e.g. lead and mercury found in the manufacture of batteries, plastic, paint and petrol) • Halogenated hydrocarbons (e.g. polychlorinated biphenyls found in coolant fluids) INFLUENCE ON HEARING As noted above, cochleotoxic and neurotoxic effects of these chemicals is the most likely cause of hearing loss. IMPORTANT CONSIDERATIONS Workers may be exposed to noise, multiple chemicals and vibrations at the same time, which act synergistically to cause hearing loss (93). In addition, factors such as age, genetic susceptibility, co-morbid conditions, and alcohol intake, among others, may influence the effects of these agents. RELATED STATISTICS Limited data are available on this subject. However, it is estimated that in Europe, 11% of workers have reported exposure to solvents and thinners, while 14% reported handling chemical substances (91). NUTRITIONAL DEFICIENCIES (94–99) Generalized undernutrition or deficiencies of certain macronutrients or micronutrients, including: • Vitamin A • Zinc • Iron INFLUENCE ON HEARING Hearing loss may occur as a result of: • Otitis media, as in the case of vitamin A and zinc deficiencies • Effects on the central auditory pathways, as with iron deficiency IMPORTANT CONSIDERATIONS Nutritional deficiencies represent a modifiable risk factor for hearing loss with potentially major implications for low-resource settings, where the majority of the global burden of hearing loss is located. RELATED STATISTICS There is lack of data in this field, but emerging evidence points to a clear link between nutrition and hearing loss. A large cohort study in southern Nepal demonstrated that early childhood wasting, and stunting were consistently associated with a 1.8–2.2-fold higher risk of hearing loss in early adulthood. FACTORS ACROSS THE LIFE SPAN 22 WORLD REPORT ON HEARING VIRAL INFECTIONS (22, 42) Viruses such as such as Human immunodeficiency virus (HIV); Herpes simplex type 1 and 2; Ebola; Lassa virus; and West Nile virus. INFLUENCE ON HEARING Hearing loss may develop due to in utero exposure or exposure later in life. The underlying pathology and nature of hearing loss may vary and may be due to: • Effects on the auditory pathway • Associated chronic otitis media • Treatment with potentially ototoxic medicines IMPORTANT CONSIDERATIONS These viral infections may occur at different stages across the life course. The type and severity of hearing loss associated with them varies, and depends on the nature of the underlying pathology. RELATED STATISTICS It is estimated that 14–49% of HIV patients could experience hearing loss as a consequence of the disease or treatment with potentially ototoxic medicines. Some 5.7% of Ebola survivors, and 8.5% of those with Lassa fever experience hearing loss. OTHER EAR CONDITIONS Meniere’s disease, vestibular schwannoma, autoimmune diseases, and others, that are encountered in clinical practice and are causes of hearing loss. INFLUENCE ON HEARING Varies according to nature and severity of disease. IMPORTANT CONSIDERATIONS No available data. RELATED STATISTICS No available data. FACTORS ACROSS THE LIFE SPAN 23sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE ACUTE OTITIS MEDIA (AOM) CHRONIC SUPPURATIVE OTITIS MEDIA (CSOM) CHRONIC NONSUPPURATIVE OTITIS MEDIA (CHRONIC NSOM) NONSUPPURATIVE OTITIS MEDIA (NSOM) PERFORATION CAUSATIVE FACTORS: otitis media (34–40) The term “otitis media” (OM) reflects a range of conditions, all characterized by inflammation of the middle ear. Although anyone of any age can develop otitis media, children are most commonly affected. The different forms of OM include: • Suppurative otitis media (infective conditions): – Acute suppurative otitis media (AOM), including recurrent acute otitis media – Chronic suppurative otitis media (CSOM) • Nonsuppurative otitis media (NSOM) including acute and chronic NSOM. NSOM is synonymous with otitis media with effusion (OME) Acute otitis media (AOM) is a middle ear effusion accompanied by acute infection. Such an infection can result in a perforation of the tympanic membrane, with the possible development of chronic suppurative otitis media (CSOM). Incomplete resolution of AOM is often followed by a period with nonsuppurative otitis media (NSOM). At the same time, chronic NSOM may itself be a risk factor for AOM. Hence all conditions are interrelated and an individual with otitis media may experience its different forms at different times based on a variety of influences (Figure 1.3). Figure 1.3 Types of otitis media and their interrelationship 24 WORLD REPORT ON HEARING Otitis media poses a major concern due to its: • High incidence and prevalence: Although infection can occur at any time throughout the life course, the highest incidence is encountered in children below the age of five years. Available data indicate an incidence rate of 10.85% of AOM (40) – i.e. more than 700 million cases each year, the majority of these being children in this age range. The incidence rate varies across regions and countries – from 3.64% in central Europe to more than 43% in parts of sub-Saharan Africa. The variation across countries and regions can be attributed to genetic predispositions as well as to modifiable risk factors such as allergy, upper respiratory tract infections, exposure to second- hand smoke, lack of sanitation, undernutrition, and low socioeconomic status (36, 38, 100). The incidence rate of CSOM is 4.76% – i.e. more than 30 million cases each year, and an estimated point prevalence above 200 million cases globally (40). Some 22.6% of the burden of CSOM occurs in children below five years of age. In terms of prevalence of NSOM, it is well documented that up to 80% children have experienced at least one episode by the age of four years (35). In addition, certain Indigenous populations are predisposed towards otitis media (38, 101–103). These include native Americans, Aboriginal populations in Australia and Indigenous populations in circumpolar regions such as Canada, Alaska, and Greenland. For example, the Government of Australia has documented that in Indigenous Australian children aged 0–5 years, the prevalence rate of otitis media is over 90%; and that over half of all Indigenous children experienced some degree of hearing loss (104). • Association with hearing loss: ear infections are one of the common causes of hearing loss in childhood (20). Even though the prevalence of otitis media reduces with age, its impact on hearing is evident across the life course and hearing loss associated with otitis media persists into old age across all world regions (40). It is estimated that globally, more than 3 in 1000 people have hearing loss due to otitis media (40) of varying severity. Cases of NSOM are usually associated with mild hearing loss, which is often the only symptom and may well go undetected. Despite the “mild” grade of hearing loss, the impact of NSOM on speech perception is significant, often leading to adverse educational outcomes (105). • Potential to cause life threatening complications: it is estimated that each year 21 000 people die as a result of otitis media complications, such as mastoiditis, meningitis and brain abscess (40). Mortality is shown to be highest at the extremes of life – i.e. in the first five years of life and in those aged over 75 years. Geographically, mortality rates are lowest in high-income regions of the world; the highest rates are seen in Oceanic countries and in parts of sub- Saharan Africa. Annually, acute middle ear infection affects over 700 million people, mostly children below the age of five years (40). 25sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE CAUSATIVE FACTORS: Exposure to loud sounds and loud noise Exposure to loud sounds puts children and adults at risk not only of hearing loss, but other noise-induced health problems, such as insomnia and cardiovascular illnesses (64). Typically, sound intensity5 above 80 dB, heard for periods longer than 40 hours a week can lead to hearing loss by damaging the sensory hair cells within the inner ear (82). The higher the level of sound and the longer the duration, the greater the risk of hearing loss (82, 106).6 Loud sounds can be encountered in the workplace, in the overall living environment, and are commonly experienced as part of recreational activities. Situations which present a risk of hearing loss include: • Occupational settings: High levels of occupational noise remain a problem in all regions of the world (77). In the United States of America (USA), for example, more than 30 million workers are exposed to hazardous noise (87). The European Agency for Safety and Health at Work7 estimates that 25–33% of the workforce in Europe is exposed to high-level noise at least a quarter of their working time (75). In other parts of the world, data on noise-induced hearing loss are scarce, but available evidence suggests that average noise levels are well above the recommended levels (77, 107) and may well be rising due to increasing industrialization that is not always accompanied by protection. Workers in shipbuilding, the armed forces, the engineering industry, manufacturing, building and construction, woodworking foundries, mining, the food and drink industry, agriculture and entertainment are most likely to be exposed to high levels of sound (74–76). Concurrent vibration or exposure to chemicals (e.g. solvents, lead) enhances the harmful effects of noise on hearing. • Recreational settings: Risk of hearing loss is also encountered when people expose themselves to loud levels of sound in recreational settings (79). Noisy leisure activities, especially the use of firearms, can cause the same damage to hearing as exposure to occupational noise (74). Prolonged listening to loud music through personal audio devices (i.e. personal music players used 5 Sound intensity is measured in decibels, represented as “dB”. 6 The equal energy principle states that the total effect of sound is proportional to the total amount of sound energy received by the ear, irrespective of the distribution of that energy over time and that the amount of energy doubles for every 3 dB increase in intensity of sound. 7 See: https://osha.europa.eu/en. Noise in sporting events can reach levels as high as 135dB © D re am st im e ph ot os 26 WORLD REPORT ON HEARING with headphones/earphones) increases the risk of hearing loss and results in worsening of audiometric thresholds (80). Listeners who regularly use portable audio devices can expose themselves to the same level of sound in 15 minutes of music at 100 dB that an industrial worker would receive in an 8-hour day at 85 dB. Given that the volume range of a typical listener is between 75 dB and 105 dB (64), this presents cause for concern. WHO estimates that over 50% of people aged 12–35 years listen to music over their personal audio devices at volumes that pose a risk to their hearing. Among those who frequently visit entertainment venues, nearly 40% are at risk of hearing loss (84). • Environmental factors (other than occupational and recreational settings): Loud sounds are encountered routinely in the everyday environment. Common examples include the noise from traffic or home appliances. Overall, environmental exposure to noise is mostly lower than the levels required for development of irreversible hearing loss. However, people exposed to such levels of noise (not sufficient to cause hearing loss) can experience other health effects, including greater risk of ischaemic heart disease, hypertension, sleep disturbances, annoyance and cognitive impairments (81, 82). CASE STUDY Loud sounds can cause lasting damage Matt Brady, a 22-year-old University student suffered permanent hearing damage from listening to music at a very high volume while exercising on a treadmill. Just as on a regular day, Matt was exercising and listening to music using his earphones when he experienced pain in his ears and head, followed by lasting hearing loss which affected his social and academic life. It took almost a year for multiple consulting doctors to understand the association between his hearing loss and his habit of listening to loud music. Matt now has permanent difficulty in listening and finds conversation challenging in situations with background noise. Having learnt the hard way, Matt Brady is now a passionate advocate for safe listening behaviour as a way of ensuring others do not experience a similar impact to their hearing (109). • Development of noise-induced hearing loss: It is well established that noise damages the structures within the cochlea in a dose-response manner – i.e. the higher the amount of exposure, the greater the impact (83, 84). Sometimes, It is estimated that in the USA, 21 million adults (19.9%) who reported no exposure to loud or very loud noise at work showed evidence of noise-induced hearing loss (108). 27sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE such damage may manifest only as difficulty in understanding speech in a noisy environment – a typical complaint associated with noise-induced hearing loss (55). In addition, noise exposure is commonly associated with tinnitus – the sensation of ringing in the ear, and the phenomenon known as “hidden hearing loss” (85). • Tinnitus: is derived from the Latin verb tinnire (to ring) and refers to the conscious perception of an auditory sensation in the absence of a corresponding external stimulus (110). Tinnitus is commonly an outcome of noise exposure and may accompany or occur in the absence of clinically evident hearing loss (85). Research shows that workers exposed to noise are more likely to experience tinnitus (83). Tinnitus may also be caused by other auditory and nonauditory conditions. The onset, perception, and impact of tinnitus can be influenced by a number of psychological factors, such as anxiety and depression (111). Prevalence in the general population ranges from 5.1% to 42.7%, while bothersome tinnitus is encountered in 3–30% of the population (112). • Hidden hearing loss: refers to the condition where an individual experiences common symptoms associated with noise-related auditory damage such as difficulty in hearing noise, tinnitus, and hyperacusis. However, as its name suggests, hidden hearing loss (HHL) is undetectable on pure tone audiometry, which shows normal hearing sensitivity at 250–8000 Hz. The condition is attributed to the destruction of synaptic connections between hair cells and cochlear neurons (cochlear synaptopathy) which occurs well before the hair cells are damaged and as a result of exposure to noise (85, 113). It is likely that many people struggle with HHL and that it occurs in younger age groups due to increasing exposure to recreational noise (85). It is also suggested that the changes caused by noise exposure, even early in life, make the ears significantly more vulnerable to ageing and hasten the onset of age-related hearing loss (86). Irrespective of its presentation, the progression of irreversible noise-related auditory damage is relentless so long as the exposure continues. CASE STUDY Studying the long-term impact of sound exposure: The Apple Hearing Study* To better understand long-term sound exposure and its impact on hearing health, a large-scale study was launched in 2019 through collaboration between the University of Michigan, USA and Apple.** The outcomes of this study will help guide public health policy and prevention programmes designed to protect and promote hearing health both in the USA and globally. * https://sph.umich.edu/applehearingstudy/ **https://clinicaltrials.gov/ct2/show/NCT04172766 28 WORLD REPORT ON HEARING CAUSATIVE FACTORS: Age-related factors Given its high prevalence in the community, age-related hearing loss (ARHL) – also known as presbycusis – poses the greatest societal and economic burden from hearing loss across the life course and is expected to increase with the current demographic shifts (see Section 3). Current estimates suggest that over 42% of people with any degree of hearing loss are aged above 60 years. Globally, the prevalence of hearing loss (of moderate or higher grade severity) increases exponentially with age, rising from 15.4% among people aged in their 60s, to 58.2% among those aged more than 90 years. This trend is observed across all WHO regions. Figure 1.4 below shows a prevalence across regions of 10.9–17.6% among individuals aged 60–69 years, increasing to 41.9–51.2% among those aged 80–89 years, and reaching 52.9–64.9% in those aged above 90 years. Figure 1.4 Prevalence of hearing loss (of moderate or higher grade) in older adults by decades 12.9 13.4 10.9 16.3 17.6 16.8 24.4 29.0 23.4 31.3 30.9 32.6 42.4 51.2 42.0 50.7 45.3 48.5 53.9 64.9 56.5 62.0 52.9 58.9 0 10 20 30 40 50 60 70 Prevalence (%) 60–69 70–79 80–89 90+ African Region Eastern Mediterranean Region European Region Region of the Americas South-East Asia Region Western Pacific Region 29sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE The development of ARHL can be attributed to physical and environmental insults, combined with genetic predispositions, and an increased vulnerability to physiological stressors and modifiable lifestyle behaviours experienced throughout the course of life (6). These factors include exposure to loud noise, ototoxic medications or chemicals, smoking, and dietary habits, as well as chronic conditions, such as cardiac disease. While factors causing ARHL in an individual cannot be separated, the additive nature of such insults, combined with biological susceptibilities, increase the risk of hearing loss. Adopting preventive behaviours, as outlined earlier, and making healthy lifestyle choices in the form of good nutrition, exercise and the avoidance of smoking, can reduce risk of hearing loss in older age. The impacts of unaddressed adult onset hearing loss include social withdrawal, lost productivity from early retirement and the costs of informal care, mental and physical declines (114–117). Without timely intervention, ARHL is associated with poorer quality of life as well as a broad range of negative effects on the communication partners of those affected (118). Preventive efforts, as described below, are supported by strong public health strategies (outlined in Section 2) and can reduce the occurrence of ARHL. In addition, early detection of hearing loss, and appropriate interventions to address ARHL can mitigate many of the associated adverse effects (119–121). 1.2.3 PROTECTIVE AND PREVENTIVE FACTORS OF HEARING LOSS Various factors and interventions can either prevent or address the above-mentioned causes and thereby prevent onset of hearing loss or delay its progression. Detailed information on ear and hearing care (EHC) practices that can prevent ear diseases and maintain hearing capacity is provided below. The most relevant preventive actions that can be undertaken by individuals at a personal level across the life course to maintain their own hearing capacity is set out in Table 1.2 (122–124). Preventive public health actions, not included in the table, are described in Section 2 of this report. 30 WORLD REPORT ON HEARING Table 1.2 Protective and preventive factors for hearing loss across the life course MATERNAL NUTRITION (125–129) Balanced maternal nutrition during pregnancy. PROTECTION AGAINST HEARING LOSS Maternal nutrition influences the infant’s birth weight as well as its overall health. Low birth weight and micronutrient deficiencies are linked with congenital hearing loss which can be avoided. IMPORTANT CONSIDERATIONS Maternal malnutrition can be minimized through appropriate dietary interventions that address these deficiencies. MATERNAL HYGIENE (130–132) Includes simple practices such as: • frequent handwashing; • thorough washing and peeling of fruits and vegetables; • avoiding unprotected contact with soil and cat waste; and • cooking food to safe temperatures. PROTECTION AGAINST HEARING LOSS Certain infections that lead to congenital hearing loss, such as (cytomegalovirus) infections and toxoplasmosis, can be prevented through good hygiene and care. IMPORTANT CONSIDERATIONS No available data. BREASTFEEDING (133) Early initiation of breastfeeding and exclusive breastfeeding during initial months of life, in line with WHO’s recommendations (134). PROTECTION AGAINST HEARING LOSS Offers significant protection against acute otitis media (AOM), especially during the early years of life (133). Since chronic otitis media is commonly a sequelae of AOM, promotion of breastfeeding can help protect babies from CSOM with its consequent hearing loss and possible complications. IMPORTANT CONSIDERATIONS No available data. GOOD EAR HYGIENE* (123, 135, 136) Includes safe practices such as: • avoiding use of cotton-tipped swabs for the ear; • not inserting/instilling any objects or liquids in the ear; • avoiding use of home remedies for common ear conditions; and • seeking prompt medical attention to treat common colds, ear pain/discharge/bleeding or hearing loss. PROTECTION AGAINST HEARING LOSS Such practices can prevent the occurrence or aggravation of wax accumulation or otitis media. IMPORTANT CONSIDERATIONS Most people do not need a regular schedule for prevention of earwax accumulation. Some may find it necessary to have a cleaning procedure performed occasionally. Earwax is formed naturally by the body and helps to protect the skin of the ear canal and to kill germs. A medical practitioner may find an excess of earwax at a regularly scheduled general check-up and perform a cleaning procedure (71). *Detailed information provided on page 33. FACTORS ACROSS THE LIFE SPAN 31sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE Table 1.2 Protective and preventive factors for hearing loss across the life course AVOIDANCE OF TOBACCO Avoidance of all forms of tobacco use, as well as exposure to secondhand smoke. PROTECTION AGAINST HEARING LOSS Given the relationship between tobacco consumption, chronic diseases, and hearing loss, avoiding tobacco can mitigate the risks associated with its use. Secondhand smoke is associated with otitis media, especially in children, which can be avoided. IMPORTANT CONSIDERATIONS No available data. PROTECTION AGAINST HEAD OR EAR INJURY (137, 138) Common measures of protection, such as: • Use of helmets while riding two-wheelers • Avoiding slaps, especially over the ear PROTECTION AGAINST HEARING LOSS Since direct injury over the ear or head can result in hearing loss, avoidance is essential for mitigating this risk factor. IMPORTANT CONSIDERATIONS Slapping children is a form of punishment commonly practiced in many parts of the world. Besides the life- long psychological effects, slapping over the ear can also lead to perforated ear drums with potential for otitis media and hearing loss. GOOD NUTRITION (94, 127, 129, 139) The intake of a balanced diet, complete with essential macronutrients and micronutrients in proper concentration. PROTECTION AGAINST HEARING LOSS Balanced nutrition can reduce sensorineural degeneration associated with noise exposure and ageing, and protect against childhood purulent ear infections (e.g. otitis media). IMPORTANT CONSIDERATIONS Supplementation with omega 3 fatty acids, Vitamins A, C, E, and folic acid; as well as minerals such as magnesium, zinc and iodine is shown to be beneficial for the auditory system. HEALTHY LIFESTYLE (140, 141) Includes modifiable lifestyle factors, such as physical activity or exercise, diet, alcohol intake, smoking, substance abuse and recreation. PROTECTION AGAINST HEARING LOSS Adopting healthy lifestyle practices mitigate hearing loss by reducing the co-occurrence of chronic diseases and delaying the onset of age-related neural degeneration. IMPORTANT CONSIDERATIONS Higher educational attainment has been linked to a reduction in hearing loss, mainly through avoidance of modifiable lifestyle-related risk factors. FACTORS ACROSS THE LIFE SPAN 32 WORLD REPORT ON HEARING IMMUNIZATION Vaccination, as recommended by global and national immunization programmes. PROTECTION AGAINST HEARING LOSS Timely immunization as protection against many diseases, including rubella, meningitis, mumps, measles and their associated hearing loss. IMPORTANT CONSIDERATIONS Further information on immunization is provided in Section 2 of this report. AVOIDING LOUD SOUNDS AND LOUD NOISE Includes practices to avoid exposure to loud sounds in professional and personal settings. PROTECTION AGAINST HEARING LOSS The importance of noise as a causative factor for hearing loss has been highlighted earlier. Minimizing this risk factor can reduce hearing loss occurrence and delay the onset of age-related hearing loss in older adults. IMPORTANT CONSIDERATIONS Further information on loud sounds and noise is provided in Section 2 of this report. FACTORS ACROSS THE LIFE SPAN 33sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE PROTECTIVE AND PREVENTIVE FACTORS: Practicing good ear hygiene (142) Practicing good ear hygiene can prevent many of the common conditions associated with hearing loss, as well as leading to early identification so that hearing loss can be prevented or reversed. Simple measures of ear hygiene include: • Avoiding the use of cotton buds (68, 143). It is important for people to understand that cleaning the inside of their ears is not usually necessary, and that wax is a normal ear secretion and harmless in most people (70, 71). The common habit of cleaning the ears excessively with use of cotton-tipped buds irritates the skin of the ear canal, which may lead to infection, and even increase the chances of wax impaction (71). • Not inserting or instilling any objects or liquids into the ear. Unless their use is specifically recommended by a health-care practitioner objects or liquids should not be inserted into the ear. Different types of oils are commonly used; and foreign bodies such as cotton-tipped buds, matchsticks, feathers, pins, or pencils introduced to clean the inside of the ears are sometimes left in the ear canal causing further infection or harm (70, 71). Their use can result in trauma to the ear canal, perforations of the ear drum and may aggravate cerumen impaction. • Not using home remedies. The use of home remedies for common ear conditions (such as ear pain) is widespread and can cause harm rather give benefits (144). Remedies such as ear candling (71, 145), plant juice/hot oil instillation should not be used to treat ear diseases or conditions, nor should seeking care from untrained providers as is common practice in some parts of the world (146). • Seeking prompt medical attention. Seeking timely medical care for the treatment of common colds, ear pain, ear fullness, ear discharge, bleeding from the ear, or hearing loss, can help prevent or identify ear and hearing problems. These symptoms can indicate an underlying ear disease such as otitis media and commonly require a medical evaluation for diagnosis and management (71). While ear fullness, pain and slight hearing loss may be due to cerumen impaction, it cannot be presumed to be the cause, and needs confirmation by a trained health-care provider. CARE FOR YOUR EARS (140) DON’T listen to very loud noises or music for long periods as this can cause hearing loss. DON’T put anything in the ear. No cotton buds, clips, toothpicks, sticks or hopi candles. DON’T ignore an ear that has any pus or fluid coming out of it. DON’T treat any ear conditions with hot or cold oil, herbal or home remedies. DON’T swim or wash in dirty water. 34 WORLD REPORT ON HEARING PROTECTIVE AND PREVENTIVE FACTORS: Avoiding loud sounds and loud noise (147) As noted in this section, the recommended level of sound exposure is below 80 dB for a maximum of 40 hours per week. Indications of noise being too loud is when, for example, voices need to be raised in order for conversation to be understood; when it is difficult for the listener to understand what a person is saying when at an arm’s length distance; or when listeners develop pain or a ringing sensation in their ear(s). Hearing can be protected through adopting simple measures, such as: • Keeping noise volumes down Sound exposure can be reduced when listening to personal audio devices by: – Keeping the volume of the personal audio devices (smartphones or MP3 players that are used with headphones/earphones) below 80 dB. This can be checked with the use of certain freely available smartphone applications (apps). Some devices provide this as an inbuilt feature. In the absence of these, the rule of the thumb for staying safe is to listen at a volume below 60% of maximum. – Using carefully-fitted and, where possible, noise cancellation earphones or headphones. Well fitted earphones and headphones allow music to be heard clearly at lower levels of volume. In addition noise-cancelling earphones and headphones cut down the background noise, so that users can hear sounds at lower volumes than otherwise needed. For example, frequent users of personal audio devices on trains or airplanes should consider using noise- cancelling earphones or headphones in these settings. • Protecting ears in noisy situations In noisy workplaces and when frequenting nightclubs, discotheques, bars, sporting events and other noisy places, sound exposure can be limited by: – Regularly using earplugs as hearing protection. Well-inserted earplugs can help to reduce the level of exposure considerably. If inserted correctly, earplugs can reduce the exposure by 5–45 dB, depending on the type. – Maintaining a distance from the sources of sound, such as loudspeakers, can reduce the amount of sound energy a person is exposed to. 35sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE • Minimizing the time spent in noisy environments It is especially important to control the sound exposure for individuals who encounter loud sounds on a regular basis at their place of recreation or work. This can be achieved by: – Limiting time spent listening using personal audio devices. In addition, when listening to the devices, keeping the volume low, as indicated above. – Taking short breaks away from loud sounds. When in a noisy environment, trying to take regular breaks and moving to a quieter area. This could help the sensory cells to recover from the fatigue caused by noise exposure and reduce the risk of hearing loss. • Monitoring personal sound exposure Knowing the level of sound being experienced can help a person set their own limits according to their own preference. This can be achieved by: – Using smartphone apps that monitor personal sound exposure. Apps are available that can help one to monitor exposure through the device and also in the external environment. – Using smartphones, currently available, that include inbuilt safe listening features. Use of these can assist people in making safe listening choices. Use of earplugs in noisy places can reduce the risk of hearing loss significantly © E dd ie L in ss en / Al am y St oc k Ph ot o 36 WORLD REPORT ON HEARING More than 1.5 billion people experience some degree of hearing loss, which can significantly impact their lives, their families, society and countries. 1.3 DECLINE IN HEARING CAPACITY 1.3.1 DEFINITION AND TYPES OF HEARING LOSS (148) A person is said to have hearing loss if their hearing capacity is reduced and they are not able to hear as well as someone with normal hearing. “Normal” hearing typically refers to hearing thresholds of 20 dB or better in both ears (see Table 1.3). Those with a hearing threshold above 20 dB may be considered “hard of hearing” or “deaf” depending upon the severity of their hearing loss. The term “hard of hearing” is used to describe the condition of people with mild to severe hearing loss as they cannot hear as well as those with normal hearing. The term “deaf” is used to describe the condition of people with severe or profound hearing loss in both ears who can hear only very loud sounds or hear nothing at all. Different types of hearing loss include: • Conductive hearing loss: This term is used when hearing loss is caused by problems located in the ear canal or the middle ear which make it difficult for sound to be “conducted” through to the inner ear. • Sensorineural hearing loss: This term is used when the cause of hearing loss is located in the cochlea or the hearing nerve, or sometimes both. “Sensori-” relates to the cochlea which is a “sense organ”; “neural” relates to the hearing nerve. • Mixed hearing loss: This term is used when both conductive and sensorineural hearing loss are found in the same ear. 1.3.2 ASSESSING HEARING CAPACITY Hearing capacity refers to the ability to perceive sounds and is commonly measured through pure tone audiometry (PTA) – considered the gold standard test of assessment. Audiometric threshold shifts help to define the nature of hearing loss, which may be conductive, sensorineural or mixed in type; and range from mild to complete in severity. 37sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE Assessment of hearing capacity through PTA is essential, both for epidemiological purposes and to guide rehabilitation. However, PTA assessment should not be the sole determinant for rehabilitation, mainly because audiometric shifts do not provide information on how sounds are processed by the central auditory system, and therefore offer only limited insight into “real-world” functioning (149). For example, a person with an audiogram8 test result of “normal” may face problems in difficult listening environments, such as in noisy situations (85, 150). Even when hearing loss is mild and therefore may not be considered significant, a person may experience limitations in everyday functioning which would not be reflected through the sole assessment of an audiogram (151, 152). Children and adults may have a normal audiogram but have a deficit in processing auditory information in the brain and limitations in hearing – referred to as central auditory processing disorder (149, 153). Some of these limitations can be addressed through speech tests such as “speech discrimination” and “speech-in-noise” tests (149). It is therefore important to take a holistic view of a person’s audiological profile and hearing experiences to ensure that limitations in activity, participation in quiet and noisy environments, and communication needs and preferences, are all addressed (8, 154). These considerations are elaborated in Section 2. 1.3.3 AUDITORY PROCESSING DISORDERS Some children and adults may experience hearing difficulties in the absence of any substantial audiometric findings. These may have an auditory processing disorder (APD) – a generic term for hearing disorders that result from the poor processing of auditory information in the brain (149, 153). This may manifest as poor hearing and auditory comprehension in some circumstances, despite normal hearing thresholds for pure tones. Prevalence estimates of APD in children range from 2–10% with frequent co-occurrence in children with other learning or developmental disabilities (153, 155). APD can affect psychosocial development, academic achievement, social participation, and career opportunities. Age-related APD is also a common contributor to hearing difficulties in older age. 1.3.4 GRADES OF HEARING LOSS To standardize the way in which severity of hearing loss is reported, WHO has adopted a grading system based on audiometric measurements. This system is a revision of an earlier approach adopted by WHO, and differs from the earlier system in that measurement of onset of mild hearing loss is lowered from 26 dB to 20 dB; hearing loss is categorized as mild, moderate, moderately-severe, severe, profound or complete; and unilateral hearing loss has been added. In addition to the classifications, the revised system provides a description of the functional 8 Audiograms show the minimum intensity, in decibels, a person can hear at different frequencies of sound. This is typically depicted in graph form following a hearing test, as measured by an audiometer. 38 WORLD REPORT ON HEARING consequences for communication that are likely to accompany each level of severity (148). This revised grading system is presented in Table 1.3 below. Table 1.3 Grades of hearing loss and related hearing experience* Grade Hearing threshold‡ in better hearing ear in decibels (dB) Hearing experience in a quiet environment for most adults Hearing experience in a noisy environment for most adults Normal hearing Less than 20 dB No problem hearing sounds No or minimal problem hearing sounds Mild hearing loss 20 to < 35 dB Does not have problems hearing conversational speech May have difficulty hearing conversational speech Moderate hearing loss 35 to < 50 dB May have difficulty hearing conversational speech Difficulty hearing and taking part in conversation Moderately severe hearing loss 50 to < 65 dB Difficulty hearing conversational speech; can hear raised voices without difficulty Difficulty hearing most speech and taking part in conversation Severe hearing loss 65 to < 80 dB Does not hear most conversational speech; may have difficulty hearing and understanding raised voices Extreme difficulty hearing speech and taking part in conversation Profound hearing loss 80 to < 95 dB Extreme difficulty hearing raised voices Conversational speech cannot be heard Complete or total hearing loss/deafness 95 dB or greater Cannot hear speech and most environmental sounds Cannot hear speech and most environmental sounds Unilateral < 20 dB in the better ear, 35 dB or greater in the worse ear May not have problem unless sound is near the poorer hearing ear. May have difficulty in locating sounds May have difficulty hearing speech and taking part in conversation, and in locating sounds * The classification and grades are for epidemiological use and applicable to adults. The following points must be kept in mind while applying this classification: • While audiometric descriptors (e.g. category, pure-tone average) provide a useful summary of an individual’s hearing thresholds, they should not be used as the sole determinant in the assessment of disability or the provision of intervention(s) including hearing aids or cochlear implants. • The ability to detect pure tones using earphones in a quiet environment is not, in itself, a reliable indicator of hearing disability. Audiometric descriptors alone should not be used as the measure of difficulty experienced with communication in background noise, the primary complaint of individuals with hearing loss. Unilateral hearing loss can pose a significant challenge for an individual at any level of asymmetry. It therefore requires suitable attention and intervention based on the difficulty experienced by the person. ‡ “Hearing threshold” refers to the minimum sound intensity that an ear can detect as an average of values at 500, 1000, 2000, 4000 Hz in the better ear (148, 156, 157). 39sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE The classifications used in Table 1.3 follow the recommendations of the International Classification of Functioning, Disability and Health (ICF) proposed by WHO in 2001. As stated in the ICF, a person with the slightest reduction in hearing sensitivity has a potentially “disabling” condition. The ICF defines a person’s state of health along three dimensions which are outlined in Box 1.1 (158). According to the ICF, the disability experienced is determined not only by the individual’s hearing loss but also by the physical, social and attitudinal environment in which the person lives, and the possibility of accessing quality EHC services. Therefore, a person with hearing loss who does not have access to hearing care, is likely to experience far greater limitations in day-to-day functioning and thus higher degrees of disability. Box 1.1 International Classification of Functioning, Disability and Health (158) The International Classification of Functioning, Disability and Health (ICF) is the WHO framework for measuring health and disability at both individual and population levels. The ICF defines a person’s state of health across three dimensions: (i) Impairment: which relates to the body-level function or shape (referred to as “hearing loss” in the case of hearing). (ii)  Activity limitation: which relates to personal level of function (formerly termed as “disability”). (iii) Participation restriction: which relates to psychosocial function (termed as “handicap” in earlier versions of the ICF). The term “disability” encompasses all problems or difficulties a person with hearing loss may encounter when carrying out everyday activities or situations, such as self-care, or going to school or work. “Disability” in terms of hearing loss refers to the impairments, limitations and restrictions (physical, social, or attitudinal) experienced. As functioning and disability are influenced by context, the ICF also includes a list of environmental factors that contribute to the difficulities experienced by people with hearing loss. 40 WORLD REPORT ON HEARING 1.3.5 ESTIMATES OF HEARING LOSS9 Hearing loss currently affects more than 1.5 billion people or 20% of the global population; the majority of these (1.16 billion) have mild hearing loss. However, a substantial portion, or 430 million10 people (i.e. 5.5% of the global population) experience moderate or higher levels of hearing loss which, if unaddressed, will most likely impact their daily activities and quality of life. More detailed information about the severity and distribution of hearing loss is presented in the following data. HEARING LOSS ACCORDING TO SEVERITY Besides the 1.16 billion people worldwide with mild hearing loss, about 400 million live with hearing loss that ranges from moderate to severe; nearly 30 million have profound or complete hearing loss in both ears (Figure 1.5). Figure 1.5 Number of people and percentage prevalence according to grades of hearing loss Figure 1.5 Number of people and percentage prevalence according to grades of hearing loss 0.2% Mild Moderate Moderately severe Severe Profound Complete 14.9% 3.4% 1.3% 0.4% 0.2% 1153 million 266 million 103 million 30.7 million 17.2 million 12.6 million Globally 1.5 billion people live with hearing loss 9 GBD 2019 Hearing Loss Collaborators. Hearing loss prevalence and years lived with disability, 1990–2019: findings from the Global Burden of Disease Study 2019. The Lancet. (2021). doi: 10.1016/S0140-6736(21)00516-X. 10 Refers to number of people with hearing threshold higher than 35 dB in the better hearing ear. 41sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE AGE AND GENDER DIFFERENCES IN HEARING LOSS The global prevalence of moderate or higher grades of hearing loss increases with age, rising from 12.7% at the age of 60 years to over 58% at 90 years (Figure 1.6). Notable is that over 58% of moderate or higher grade hearing loss is experienced by adults above the age of 60 years. In terms of gender differences, global prevalence of moderate or higher levels of hearing loss is slightly higher among males than among females, with 217 million males (5.6%) living with hearing loss compared with 211 million females (5.5%). Figure 1.6 Global prevalence of hearing loss (of moderate or higher grade) according to age 0 10 20 30 40 50 60 Prevalence (%) 0.2 0.2 0.4 1.0 1.5 1.7 1.9 2.0 2.1 2.3 2.5 2.8 3.9 5.6 8.4 12.7 18.7 26.0 34.8 43.6 51.8 58.0 58.6 5.4 5.6 Ea rly N eo na ta l ( 0– 6 da ys ) La te N eo na ta l ( 7– 27 d ay s) Po st N eo na ta l ( 28 –3 64 d ay s) 1– 4 5– 9 10 –1 4 15 –1 9 20 –2 4 25 –2 9 30 –3 4 35 –3 9 40 –4 4 45 –4 9 50 –5 4 55 –5 9 60 –6 4 65 –6 9 70 –7 4 75 –7 9 80 –8 4 85 –8 9 90 –9 4 95 + Ag e- st an da rd ize d Al l a ge s Figure 1.6 Prevalence of moderate or higher grade of hearing loss according to age 42 WORLD REPORT ON HEARING DISTRIBUTION OF HEARING LOSS ACROSS WHO REGIONS The prevalence of hearing loss varies across the six WHO regions, from 3.1% in the Eastern Mediterranean Region, to 7.1% in the Western Pacific Region. The maximum share is contributed by the Western Pacific Region, followed by the South-East Asia Region (Figure 1.7). Figure 1.7 Prevalence of hearing loss (of moderate or higher grade) across WHO regionsFigure 1.7 Prevalence of hearing loss (of moderate or higher grade) in WHO regions Western Pacific South-East Asia Eastern Mediter- raneanEuropeanAfricanAmericas 62.7 6.2% million 39.9 3.6% million 57.3 6.2% million 22.1 3.1% million 109.4 5.5% million 136.5 7.1% million Ambitious (90%) Progressive (50%) Note: This illustration represents WHO regions, not country boundaries. PREVALENCE OF HEARING LOSS ACROSS INCOME GROUPS The prevalence of hearing loss varies greatly across World Bank income groups worldwide, from 3.3% in low-income countries, to 7.5% in high-income countries. The maximum share of people with hearing loss is contributed by lower-middle- income and upper-middle-income countries (approximately 320 million). As a share of the total number of people with moderate or higher levels of hearing loss, nearly 80% live in low-income and middle-income countries of the world, as opposed to 20% in high-income countries (Figure 1.8). 43sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE Figure 1.8 Global prevalence of hearing loss (of moderate or higher grade) according to income group 0 1 2 3 4 5 6 7 8 Figure 1.8 Prevalence of hearing loss (of moderate or higher g d ) according to income group Prevalence (%) Number (in millions) Lower-middle- income Low-income High-incomeUpper-middle- income 3.3% 4.8% 6.2% 7.5% 23.4 150.5 166.4 87.7 © C hi na R es ea rc h an d Re ha bi lit at io n Ce nt re fo r H ea rin g an d Sp ee ch Im pa irm en t ( CR RC HS I) Children with hearing loss are identified and included in an early intervention programme through newborn hearing screening conducted at national level by the CRRCHSI 44 WORLD REPORT ON HEARING Early intervention is crucial to minimize the adverse impact of hearing loss on language and cognitive development. 1.4 THE IMPACT OF UNADDRESSED HEARING LOSS In 2019, the global number of years lived with disability (YLDs) attributable to hearing loss was 43.5 million (95% UI 29.7–61.8). This number has increased by 73% since 1990 (25.0 million YLDs). Age-related hearing loss was the third largest source of global YLDs in 2019 and the leading source for adults older than 70 years of age.11 Sixty-five per cent of disability caused by hearing loss is attributed to moderate or higher grades of hearing loss. Irrespective of the severity of hearing loss or the audiological profile, the extent to which hearing loss impacts people’s lives depends on whether it is addressed with effective clinical or rehabilitative interventions (75, 123, 159), and the extent to which the environment is responsive to the needs of people with hearing loss (75, 158). The impact can also be influenced by other co-existing functional limitations such as vision impairment, autism or developmental disabilities. Dual sensory loss in the form of deaf-blindness is estimated to affect as many as 0.2– 2% of the global population at all ages (159). Implications of its impact are highlighted in Box 1.2. Box 1.2 Dual sensory loss: deaf-blindness (160, 161) Deaf-blindness involves dual sensory loss of vision and hearing to varying degrees. Although affecting all ages, deaf-blindness occurs most commonly in elderly people. Thus, as the global population ages, it has become increasingly prevalent. Those with deaf-blindness commonly report an overall low quality of life. They often feel socially isolated due to communication difficulties and lack of public acceptance; have reduced participation in social events due to mobility challenges; have difficulties with daily functioning; experience feelings of loneliness, anger, frustration, depression, insecurity, uncertainty about the future; worthlessness; and face stigma on a daily basis. When compared with other disabilities, individuals with deaf-blindness are more likely to live in poverty and be unemployed, with lower educational outcomes. 11 GBD 2019 Hearing Loss Collaborators. Hearing loss prevalence and years lived with disability, 1990–2019: findings from the Global Burden of Disease Study 2019. The Lancet. (2021). doi: 10.1016/S0140-6736(21)00516-X. 45sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE 1.4.1 IMPACT AT THE INDIVIDUAL LEVEL When unaddressed, hearing loss impacts many aspects of life: LISTENING AND COMMUNICATION (162) The greatest challenge for people with unaddressed hearing loss is in maintaining communication with others in their environment. The extent of the problem varies depending on the determinants listed above and may range from a person finding it difficult to listen to quiet speech or speech in noisy surroundings, to inability to hear even loud warning sounds including alarms. People with hearing loss often need to ask others to repeat themselves and may find it difficult to communicate in the workplace or to carry on a routine conversation. These difficulties have been further exacerbated as a result of the essential preventive measures against COVID-19 (163). While masks and social distancing are undisputed allies in the fight against the virus, these create additional obstacles for people with hearing loss, who often rely on lip reading and other facial and physical clues to communicate (163). LANGUAGE AND SPEECH The development of spoken language in children is directly related to their hearing ability. Most studies conducted on children with hearing loss show that they experience delayed speech and language development which are likely to continue into adulthood (154, 164). The grade of impairment is proportionate to difficulties in speech perception and language deficits (165). However, even mild or unilateral hearing losses, which are commonly overlooked, have an adverse impact on speech and language development in children (154, 166–168). The language and speech outcomes of children with hearing loss are also greatly affected by the age at which intervention is commenced, with outcomes being more successful for children identified before six months of age and followed by prompt intervention (169). The timing of intervention also affects developmental outcomes, as sensory deprivation in early years of life is commonly linked with developmental problems (170). Language is essential not only as a means for communication, but also as contributor for cognitive development, a tool for education, and the basis for social relationships. Hence, access to language is critical (171); when deaf infants are unable to access language stimulation early in life, it poses a challenge for their overall development (171). A deaf child in Bangladesh keeps up with his education © N az m ul B ar i, Ce nt re fo r D is ab ili ty in D ev el op m en t, Ba ng la de sh 46 WORLD REPORT ON HEARING In children (and also adults) that develop hearing loss after speech development, hearing loss can affect the quality of speech, which may be muffled and unclear if it is left untreated. In those with sensorineural hearing loss, such as age- related hearing loss, a common tendency to speak loudly has been observed, which can create further difficulties within families (154). COGNITION Language deprivation risks delayed cognitive development in children, which can be avoided if they receive suitable intervention during the initial years of life (170, 172). Even unilateral hearing loss, occurring in children, affects the development of cognitive skills (168). The impact on cognition is not limited to children but is clearly evident in adult-onset hearing loss as well. Hearing loss is the largest potentially modifiable risk factor for age-related dementia (173, 174). EDUCATION Hearing loss can have a long-lasting impact on the academic outcomes of an individual. Unless addressed in a timely manner, those with hearing loss have reduced school performance, slower progression through the academic system, a greater risk of dropping out of school, and lower likelihood of applying for higher education, compared with their hearing peers (181–183). EMPLOYMENT An association between hearing loss and employment in adults is evident. Students with hearing loss often demonstrate a lack of career-planning and decision-making which are required for success in the workplace (182, 183). Overall, adults with hearing loss have increased odds of unemployment or underemployment (184–186). In northern Finland, a longitudinal study showed that those aged 25 years, with clinically measured hearing loss, were twice as likely to be unemployed as those A prospective cohort studied in Norway over three decades (the HUNT study) revealed that people with moderate to severe or mild hearing loss were about half as likely to achieve higher education as people without hearing loss (181). Unaddressed hearing loss may be responsible for over 8% of cases of dementia among older adults (173, 175), with potentially a slightly higher risk contribution in high- income countries (174), and significantly increases the relative risk of dementia and cognitive impairment (173, 176–180). 47sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE of the same age with normal hearing (182). When employed, people with hearing loss often earn lower wages and retire earlier than their hearing peers (184, 187). SOCIAL ISOLATION AND LONELINESS Hearing loss contributes to both social isolation and loneliness at all ages, more specifically in women and older adults (188, 189), possibly because of decreased participation in activities, or by having a smaller social network. This is observed especially in places where access to ear and hearing care is limited (190). The impaired ability to comprehend auditory information and maintain conversations (191) may lead to avoidance of potentially embarrassing social situations by the affected persons (192). Hence, people with hearing loss, particularly those who do not use hearing aids, show elevated levels of loneliness (188, 193, 194). Social isolation and loneliness due to hearing loss can have important implications for the psychosocial and cognitive health of older adults. Lack of engagement and feeling lonely may mediate the pathway linking hearing loss and cognitive decline (195, 196). Furthermore, both can contribute to worsened mental health, leading to experience of depression and distress (189, 197, 198). MENTAL HEALTH Across the life course, people with hearing loss commonly have higher rates of depression and report lower quality of life compared with their hearing peers (199– 201). Social withdrawal and altered social interactions are frequently observed in persons with hearing loss, as well as feelings of embarrassment, rejection and anxiety (162). Often, during conversation, their communication partners experience frustration and anger (162). In northern Finland, people with unaddressed hearing loss are twice as likely to be unemployed as those with normal hearing (182). 48 WORLD REPORT ON HEARING RELATIONSHIPS Over 90% of deaf children are born to hearing parents who most often have no fully effective means to communicate with their child (202, 203). A number of studies report that parents have difficulties developing meaningful communication with their child with hearing loss, and in managing the child’s behaviour, especially if they have other conditions such as autism spectrum disorders (204). In adults, hearing loss can have a negative impact on personal relationships resulting in communication difficulties, misunderstandings and conflict (162). The effect is evident both for the person with hearing loss as well as their communication partners. CASE STUDY Parents need support in addressing the needs of their deaf or hard-of-hearing children Given the fact that the majority of deaf and hard-of-hearing children are born to hearing parents, who lack any experience with the implications of dealing with hearing loss, this affects families in many ways. For example, it leads to higher levels of stress among parents, especially when having to make decisions about the child’s rehabilitation and education. The well-being of parents themselves has a significant influence of the audiological, cognitive and socioemotional outcomes of the child with hearing loss (205). Hence, information, guidance, and support to parents whose child is diagnosed with hearing loss is crucial but not always available. In some parts of the world, well-organized efforts by groups of parents of deaf and hard-of-hearing children, such as “Hands and Voices” (206), have taken leadership in providing family support and making available resources that increase parents’ knowledge about addressing the needs of their children. This engagement has had a far-reaching impact on the knowledge of, and support received by, families with deaf or hard-of-hearing children in the places served. As one parent responded when receiving parent-to-parent support: “Thank you so much. I have been feeling like I am in a small boat in the middle of the ocean with no sight of land or vessel. You have thrown me a life preserver.”(206) IDENTITY AND STIGMA Hearing loss among children, adolescents and adults is frequently linked with feelings of inadequacy and low self-esteem (162, 207). People with hearing loss, even when it is addressed, may commonly reflect the stigma that is associated with hearing loss and the use of hearing devices (162) and try to hide their impairment. Many choose not to use hearing aids due to prejudiced mindsets and ageist stereotypes (208). 49sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE 1.4.2 IMPACT AT A FAMILY/COMMUNICATION PARTNER LEVEL The majority of children who are deaf or hard of hearing are born to parents of normal hearing (202, 203). In the USA, for example, only around 4% of deaf or hard- of-hearing infants have deaf parents; a further 4% have one parent with hearing loss. Parents with a deaf or hard-of-hearing child commonly experience higher levels of emotional and physical strain than other parents; their career may be compromised to take care of their child full time, and sometimes they may have to relocate to be closer to the required services (204). The impact on families, especially on communication partners, is also noteworthy, as they may experience reductions in social functions due to participation restrictions related to the partner’s hearing loss; increased stress related to communication; and reduced satisfaction within the relationship (118, 162). 1.4.3 ECONOMIC IMPACT (210) Beyond financial hardships at the individual level, hearing loss has a considerable economic impact on society as a whole. WHO data reveal that the overall global cost of unaddressed hearing loss is greater than $ 980 billion annually (see Figure 1.9). These include costs related to: • The health-care sector: these are estimated to be around $ 314 billion and include health-care costs for children and adults posed by failing to address hearing loss. They do not include costs for the provision of services and rehabilitation. • The educational sector: a conservative estimate of the cost for providing support to children (i.e. those aged 5–14 years) with unaddressed hearing loss is nearly $ 27 billion. This assumes that only children with at least moderately severe hearing loss (i.e. a hearing level greater than 50 dB in the better hearing ear) require educational support. • Loss of productivity: costs related to unemployment and premature retirement among people with hearing loss is conservatively estimated as $ 182.5 billion annually. • Societal costs: the result of social isolation, communication difficulties and stigma add a further $ 456.5 billion each year. These costs are calculated on the basis of the monetary value attached to avoidance of a year lived with disability and draw upon disability-adjusted life years (DALYs) attributed to hearing loss. It is also important to note that 53% of all costs are attributed to low- and middle- income countries. Unaddressed hearing loss costs the world $ 980 billion annually. 50 WORLD REPORT ON HEARING Figure 1.9 Illustrative combined direct, indirect and intangible costs of hearing loss (in billion dollars)* INTANGIBLE 456.5 HEALTH 313.6 EDUCATION 26.8 PRODUCTIVITY 182.4 Americas 262.0 All costs African 27.1 All costs European 224.5 All costs Eastern Mediterranean 29.8 All costs South-East Asia 107.7 All costs Western Pacific 328.3 All costs 979.6 All costs World INTANGIBLE HEALTH EDUCATION PRODUCTIVITY 125.3 88.6 3.8 44.1 12.4 7.3 3.6 3.5 125.6 74.5 3.2 21.1 13.9 9.0 1.6 5.2 38.7 32.2 7.0 29.7 140.5 101.8 7.4 78.5 * All costs are calculated for moderate or higher degrees of hearing loss, i.e. hearing level greater than 35 dB in the better-hearing ear. The costs are estimated in 2015 International dollars (a unit of currency defined by the World Bank and represented simply as “$” in the table). N.B. The analysis takes no account of certain aspects of hearing loss, the costs of which are not well documented in literature, such as the costs of providing informal care, or pre-school learning and higher education for people with unaddressed hearing loss (201). These estimates focus only on unaddressed hearing loss and do not take into account the high costs posed by otitis media and its management. The costs attributed to the medical and surgical management of these potentially preventable diseases are high. In Australia, for example, treatment costs for cases of otitis media, excluding complications and comorbidities, were 100–400 million Australian dollars in 2008 (211). In the Republic of Korea, a nationally representative study estimated treatment costs of otitis media as 497.35 million US dollars in 2012 alone (212). In contrast to the data provided above, these costs refer to management of this group of conditions in certain countries. 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Biomed Res Int. 2016;2016. 62 WORLD REPORT ON HEARING Timely intervention benefits those with hearing loss and their families* *Contributed by the Global Foundation For Children With Hearing Loss. See: https://childrenwithhearingloss.org/ © P ai ge S tr in ge r 63sECtIoN 1 tHE ImPoRtANCE oF HEARING ACRoss tHE lIFE CoURsE My daughter, Nguyen Ngoc Bao Tran, was 11 months old when her hearing was tested and hearing loss diagnosed. My family could not afford the hearing aids necessary for her to develop listening and speaking skills. The doctor told us that time is of the essence. He told us that to have the chance to learn to listen and talk, children with hearing loss need to be identified as young as possible, fitted with appropriate hearing technology, and receive rehabilitation. Thanks to the support of an international foundation, Bao Tran was fitted with a pair of high-quality hearing aids when she was 17 months old. I still remember the moment when I first called her and she turned her head to look towards me. It was the happiest moment of my life, to know that my child could hear and that I will be able to talk with her! Of course, I knew that the hearing aids were just the first step. There was a long road ahead and Bao Tran would need therapy for many years to make my hope a reality. Now, after six years, my family and I are overjoyed each day to see her progress. Bao Tran goes to school proudly wearing her hearing aids, along with other children in our community. She is so talkative! I can’t get her to stop. She has many friends, loves to sing and her teachers are very happy with her. I hope that all deaf and hard-of-hearing children can get the same chances as my child, so that they have the opportunity to achieve their full potential.” Nguyen Thi Hong Loan, Bao Tran’s mother

SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 65 SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED Effective solutions can benefit all those at risk of, or living with, hearing loss. 2.1 OVERVIEW O Many of the causes that lead to hearing loss can be avoided through public health strategies and clinical interventions implemented across the life course. O Prevention of hearing loss is essential throughout the life course – from prenatal and perinatal periods to older age. In children, nearly 60% of hearing loss is due to avoidable causes that can be prevented through implementation of public health measures. Likewise, in adults, most common causes of hearing loss, such as exposure to loud noise and ototoxic chemicals, are preventable. O Effective strategies for reducing hearing loss at different stages of the life course include: – immunization; – good maternal and childcare practices; – genetic counselling; – identification and management of common ear conditions; – occupational hearing conservation programmes for noise and chemical exposure; – safe listening strategies for the reduction of exposure to loud sounds in recreational settings; and – rational use of medicines to prevent ototoxic hearing loss. O Common ear conditions, such as otitis media, can be treated medically and surgically; treatment lowers the rates of associated morbidity and mortality and can prevent or reverse the hearing loss attributed to such conditions. WORLD REPORT ON HEARING66 O Changes in the modifiable risk factors encountered across the life course can help to maintain the hearing trajectory as a person ages and influence the extent of hearing loss experienced in later life. O The adverse impacts of developing hearing loss or ear diseases at any stage during a person’s life course can be mitigated through early identification followed by prompt and appropriate interventions. O Early identification of hearing loss and ear diseases is key to effective management. Advancements in technology provide tools that can identify hearing loss at any age. To facilitate this process, it is important to implement programmes that target: – newborns and infants; – school-age children; – all those at greater risk of hearing loss due to exposure to noise, ototoxic chemicals and ototoxic medicines; and – older adults. O Hearing assessment and ear examination can be conducted in clinical and community settings as well as field settings. Tools such as “hearWHO” and other technology-based solutions enable screening for ear diseases and hearing loss to be conducted in school and community settings with limited training and resources. O Once hearing loss is identified, it is essential that it is addressed as early as possible and in an appropriate manner to mitigate any adverse impact. Such early intervention strategies must adopt a person-centred approach, taking into account the individual’s communication needs and preferences, as well as available resources. O Measures available to rehabilitate people with hearing loss include: – the use of hearing technology through hearing aids, cochlear implants and middle ear implants; – the use of sign language and other means of sensory substitution, such as speech reading, use of print on palm or Tadoma, signed communication; and – rehabilitative therapy to enhance perceptive skills and develop communication and linguistic abilities. O The use of hearing assistive technology, and services such as frequency modulation and loop systems, alerting devices, telecommunication devices, captioning services and sign language interpretation, can further improve access to communication and education for people with hearing loss. The hearing trajectory of an individual across the life course is influenced by multiple factors, including public health strategies implemented at a population level, as described in Section 1. Section 2 outlines solutions for preventing hearing loss and ear diseases through a population-based approach and presents means for identifying and addressing these conditions in a timely and appropriate manner. Additionally, Section 2 focuses on public health strategies as well as technological advances that can enable prevention, identification, treatment and rehabilitation of hearing loss and related ear diseases. SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 67 Effective public health strategies and clinical interventions can, in many cases, prevent the occurrence or progression of hearing loss. 2.2 PREVENTION OF HEARING LOSS AND EAR CONDITIONS Section 2.2 builds on the preventive actions to preserve hearing capacity that were outlined in Section 1 and focuses on actions to be taken at a population level to prevent hearing loss and ear diseases. Since certain health conditions or environmental influences are more likely to be experienced at particular stages of the life course, preventive strategies are designed to target these specific age groups. Many of these strategies, however, are applicable to multiple, or all, stages of a person’s life (Figure 2.1). Figure 2.1 Preventive strategies for hearing loss across the life course Figure 2.1 Strategies for hearing loss prevention across the life course Occupational noise control Safe listening practices in recreational settings Noise control in entertainment venues Ototoxicity prevention PRENATAL AND PERINATAL PERIODS CHILDHOOD AND ADOLESCENCE ADULTHOOD ACROSS THE LIFE COURSE Immunization in girls and women Maternal and neonatal care Genetic counselling Immunization (children) Otitis media: early identification and treatment WORLD REPORT ON HEARING68 2.2.1 PRENATAL AND PERINATAL PERIODS It is estimated that nearly 60% of hearing loss in children is due to avoidable causes such as vaccine-preventable diseases, ear infections, birth-related causes and ototoxic medicines (1). The prevention of congenital and childhood hearing loss during prenatal and perinatal periods include: IMMUNIZATION IN GIRLS AND WOMEN Vaccination against rubella prior to, or during, reproductive age is extremely effective in preventing congenital rubella in offspring (2, 3). Ongoing research into the prevention of cytomegalovirus (CMV) infection is also encouraging, although as yet a vaccine is not available (4). MATERNAL AND NEONATAL CARE Antenatal maternal health and perinatal care are clearly linked with a child’s hearing status. Evidence on the positive impact of improved antenatal and perinatal care on neonatal morbidity is unequivocal (6). While there are no studies demonstrating a direct link between improved maternal care and hearing loss, it is clear that such improved outcomes would also apply to hearing loss (7, 8). In cases of mothers infected with syphilis, cytomegalovirus, toxoplasmosis or HIV, prompt management can mitigate the risk of congenital hearing loss associated with these conditions (7, 9, 10). In addition, it is important to ensure that proper evidence-based protocols are followed for minimizing the ototoxic effects of the medicines on the mother and her infant. The availability and use of appropriate resuscitation measures along with perinatal care for the prevention and management of birth asphyxia, jaundice and perinatal infections, minimizes the adverse consequences of these risk factors (11). This contrasts with infants born in environments where health facilities are unavailable, or where health care is lacking, and who are thus at a greater risk for immediate or delayed effects on their hearing trajectories throughout life. Awareness among health professionals of these risk factors, their association with congenital hearing loss, and the common features that may indicate hearing loss in an infant, can assist in early identification. “Large-scale rubella vaccination in the past decade has practically eliminated rubella and congenital rubella syndrome in many countries. In 2015, the WHO Region of the Americas became the first in the world to be declared free of endemic transmission of rubella. As of December 2016, 152 out of 194 WHO Member States had introduced rubella vaccines, with coverage varying from 13% to 99%.”(5) SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 69 GENETIC COUNSELLING In families with a history of hearing loss, genetic counselling can prepare parents for hearing loss in their offspring, and provide guidance for early identification and rehabilitation. Genetic counselling refers to the provision of accurate information in a nondirective manner with the aim of offering medical, psychological and social support (12). Such counselling services must always consider the beliefs and values of deaf communities (13). Given the correlation between congenital deafness and consanguinity, raising awareness in this respect and ensuring access to preconception and premarital counselling services for consanguineous couples can help maintain and improve outcomes, including hearing loss prevention, identification and management (14, 15). 2.2.2 CHILDHOOD AND ADOLESCENCE Many of the risk factors for hearing loss and ear disease faced during early and late childhood can be prevented or addressed. IMMUNIZATION IN CHILDREN AND ADOLESCENTS WHO estimates that over 19% of childhood hearing loss could be avoided by immunization against rubella and meningitis alone (1). Overall, vaccinations are highly effective in protecting against common illnesses such as measles, mumps, rubella and meningitis, and thus can prevent hearing loss that occurs as a complication (16, 17). The vaccine for measles, mumps and rubella (MMR) is shown to be highly effective in prevention (17, 18), and vaccines available for many of the strains that lead to meningitis has led to a significant reduction in meningitis incidence in many countries (19, 20). Any reduction in the occurrence of these infections would mitigate the risk of hearing loss associated with them. Vaccinations against common bacteria and viruses (e.g. influenza virus) associated with otitis media are also useful in reducing incidence (21–23) (see Box 2.1). It is important that countries consider these factors when planning for immunization coverage, and that effective immunization policies are implemented in line with global targets and national priorities. Awareness among health professionals regarding presentation of congenital hearing loss including features of common syndromes can assist in early identification of hearing loss. WORLD REPORT ON HEARING70 Box 2.1 Vaccination to protect against otitis media “The goal of the vaccines is to reduce or eliminate naso pharyngeal colonization of S. pneumoniae, non-typeable H. influenzae and M. catarrhalis. The seven-valent PCV (PCV7), became available in the United States and many European countries in 2000. PCV7 was associated with a 29% reduction in AOM caused by pneumococcal serotypes contained in the vaccine, a 6–7% reduction in overall AOM and a 20% reduction in the use of ventilation tubes for chronic recurrent OM. PCV13, available a decade later, has been associated with further reduction of AOM, mastoiditis and ventilation tube insertions.” (21) “In Korea, the economic burden associated with otitis media reduced from 530.11 million in 2004, before the PCV7 and PCV13 vaccines were introduced, to 497.35 in 2012, following the introduction of these vaccines.” (24) OTITIS MEDIA: EARLY IDENTIFICATION AND TREATMENT Early identification and treatment of otitis media will prevent onset, or progression, of hearing loss. Since chronic suppurative otitis media (CSOM) commonly follows untreated acute otitis media (AOM), efforts should be directed towards the identification and management of AOM in order to prevent its recurrence and avoid chronic ear infections (7, 25–27). Proper evaluation and management of persons with CSOM and nonsuppurative otitis media (NSOM) through medical and surgical means can prevent or reverse the auditory effects, while also mitigating the risk of recurrent infections (25, 27). Key considerations when identifying and treating otitis media include: • Acute otitis media – While the virtues of antibiotic use versus expectant observation approach are debated, it is important that in places where complications (such as mastoiditis) are still common and where there is no certainty of proper follow-up, antibiotics are recommended and made available to ensure effective resolution and to avoid complications (26). • Nonsuppurative otitis media or otitis media with effusion (OME) – These can be managed through the use of antibiotics, grommet insertion and adenoidectomy. The exact intervention must be determined based on indication and clinical needs (21, 28–32). For this reason, it is important that persons with NSOM/OME receive care from a suitably qualified practitioner who can manage the condition or refer to an ear, nose and throat (ENT) specialist. Appropriate medical and surgical management of otitis media is crucial to cure these illnesses and to reduce the hearing loss associated with them. An ENT surgeon and her team operates on a patient with chronic suppurative otitis media © Ja m es S au nd er s, M ay flo w er M ed ica l O ut re ac h SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 71 • Chronic suppurative otitis media – This must be addressed to ensure: (i) eradication of the infection responsible for morbidity and mortality associated with CSOM; and (ii) closure of tympanic membrane perforation, without which hearing loss due to re-infection of the middle ear may present a constant threat (27). Eradication of infection is possible with proper care through aural toilet with or without use of local antibiotics or antiseptics (33, 34). Surgical treatment for CSOM is required at times, either for removal of infection or for surgical repair of the tympanic membrane and middle ear structures. These surgical procedures, such as mastoidectomy, tympanoplasty and myringoplasty, are well established and highly effective in curing disease and reducing accompanying hearing loss (21, 35–37). It is important to correctly evaluate every person with CSOM, and that any decision regarding surgical intervention is made in consultation with an ENT specialist. Information on treatment options for discharging ears, common in those with CSOM, is provided in Box 2.2. Box 2.2 Discharging ears: medical and surgical management Discharging ears and the hearing loss associated, can and should be addressed through access to high-quality ear care (38). The purpose of treating discharging ears is to establish a dry ear, free of infection and to correct hearing loss. While in certain cases, medical treatments can control the discharge and improve hearing, surgical treatment is often needed to effectively remove infection and improve hearing over the long term. Most commonly applied treatments include: Aural toilet (38–40): Ear cleaning or aural toilet consists of cleaning discharge, pus, and debris from the ear using various techniques. Treatments can be performed by the individual, their family members, or a trained community health worker or primary care provider. Techniques include wicking, suctioning, and irrigating the ear. The benefit of aural toileting is that it can be performed frequently and requires minimal equipment and expertise. Nevertheless, aural toilet should not be considered a standalone treatment. Note: It is essential that patients are taught to care for their discharging ears. The WHO training resources for primary ear and hearing care12 provide guidance and information for health workers and patients. 12 WHO primary ear and hearing care training resources https://www.who.int/pbd/deafness/activities/hearing_care/en/ Box 2.1 Vaccination to protect against otitis media “The goal of the vaccines is to reduce or eliminate naso pharyngeal colonization of S. pneumoniae, non-typeable H. influenzae and M. catarrhalis. The seven-valent PCV (PCV7), became available in the United States and many European countries in 2000. PCV7 was associated with a 29% reduction in AOM caused by pneumococcal serotypes contained in the vaccine, a 6–7% reduction in overall AOM and a 20% reduction in the use of ventilation tubes for chronic recurrent OM. PCV13, available a decade later, has been associated with further reduction of AOM, mastoiditis and ventilation tube insertions.” (21) “In Korea, the economic burden associated with otitis media reduced from 530.11 million in 2004, before the PCV7 and PCV13 vaccines were introduced, to 497.35 in 2012, following the introduction of these vaccines.” (24) OTITIS MEDIA: EARLY IDENTIFICATION AND TREATMENT Early identification and treatment of otitis media will prevent onset, or progression, of hearing loss. Since chronic suppurative otitis media (CSOM) commonly follows untreated acute otitis media (AOM), efforts should be directed towards the identification and management of AOM in order to prevent its recurrence and avoid chronic ear infections (7, 25–27). Proper evaluation and management of persons with CSOM and nonsuppurative otitis media (NSOM) through medical and surgical means can prevent or reverse the auditory effects, while also mitigating the risk of recurrent infections (25, 27). Key considerations when identifying and treating otitis media include: • Acute otitis media – While the virtues of antibiotic use versus expectant observation approach are debated, it is important that in places where complications (such as mastoiditis) are still common and where there is no certainty of proper follow-up, antibiotics are recommended and made available to ensure effective resolution and to avoid complications (26). • Nonsuppurative otitis media or otitis media with effusion (OME) – These can be managed through the use of antibiotics, grommet insertion and adenoidectomy. The exact intervention must be determined based on indication and clinical needs (21, 28–32). For this reason, it is important that persons with NSOM/OME receive care from a suitably qualified practitioner who can manage the condition or refer to an ear, nose and throat (ENT) specialist. Appropriate medical and surgical management of otitis media is crucial to cure these illnesses and to reduce the hearing loss associated with them. An ENT surgeon and her team operates on a patient with chronic suppurative otitis media © Ja m es S au nd er s, M ay flo w er M ed ica l O ut re ac h WORLD REPORT ON HEARING72 Antibiotic use (40): Antibiotics can be delivered as drops into the ear or the mouth. Antibiotic drops coupled with aural toilet is the most common form of treatment for draining ears. Surgical treatments (38, 40–44): Surgery conducted by trained ENT specialists is often the ultimate treatment required to halt the cycle of drainage and improve hearing over the long term. Surgery may include tympanoplasty, mastoidectomy, and ossicular chain reconstruction, or frequently a combination of techniques. Surgery for CSOM occurs across a range of resource settings and is considered cost–effective. Ear surgery performed on patients by surgeons with appropriate training is associated with long-term hearing improvements. CASE STUDY Otitis media is treatable: a case study from Nicaragua Josue was six years old when his mother noticed a shift in his behaviour – from being a confident and softly spoken boy, to becoming irritable and distracted. His mother also noticed that Josue often had to raise the volume of the television set at home. But it was when his grades in school started to plummet that his parents took him to the village general practitioner (GP). When ear drops prescribed by the GP did not lead to any improvement, the family travelled to Esteli, their nearest city, to see an ENT specialist. The specialist diagnosed otitis media and referred Josue for ear surgery. Since, at the time, specialized ear surgeries were performed only in Managua, the capital city, Josue’s parents travelled across the country. Despite financial hardships, they were determined that their son should receive the treatment he so badly needed. Finally, at the age of eight years old, Josue received successful ear surgery. Post-surgery, Josue showed remarkable improvement in his symptoms and returned home. During the following months his hearing improved as did his mood and school performance. Today, he is once again on the honour roll of his class and enjoys making friends. He still needs to return to Esteli for regular check-ups, and his parents make sure that he never misses these. SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 73 EFFECTIVENESS OF EAR DISEASE PREVENTION AND MANAGEMENT Medical and surgical means to manage common ear diseases such as ear wax and otitis media are effective and cost–effective in reducing the hearing loss and morbidity due to these conditions and their complications (26, 30, 34, 45–53). Addressing ear diseases would lower the mortality rates associated with their neglect (54). CASE STUDY In Australia, the Queensland government takes effective steps to address otitis media in children (55) The children of Aboriginal and Torres Strait Islander populations have one of the highest global rates of otitis media in children – particularly for those living in rural and remote areas. To address this, Queensland government established the “Deadly Ears Deadly Kids Deadly Communities” Framework in 2009, targeting a significant reduction in the high rates of chronic suppurative otitis media in Aboriginal children. The Deadly Ears programme, which sits under this framework, delivers frontline services using a multidisciplinary team (including primary and ENT health, allied health and teaching professionals), and builds local workforce capacity in 11 partner locations across rural and remote Queensland. The programme team coordinates access to specialist services and rehabilitation programmes. This model facilitates and streamlines the process of awareness, identification, diagnosis and management of otitis media, particularly for younger children, due to the implications of hearing loss on early childhood development and education. While the programme continues to evolve, the rate of children aged 0–4 years receiving ear and hearing care services has increased from 53% (2014) to 94% (2018). 2.2.3 ADULTHOOD AND OLDER AGE Although the process of ageing is inevitable, the associated hearing loss cannot be considered unavoidable. It is now well understood that age-related hearing loss is a multifactorial condition, of which cochlear/neural ageing is only a part. Hearing loss is influenced by various determinants such as genetic factors (56), existing ear conditions, chronic illnesses, and environmental factors such as noise exposure, use of ototoxic medicines and lifestyle choices. Changes in the modifiable risk factors can alter the course of a person’s hearing trajectory and influence the extent of hearing loss experienced in the later years of life (57). WORLD REPORT ON HEARING74 2.2.4 FACTORS FOR HEARING LOSS ACROSS THE LIFE COURSE LIMITING EXPOSURE TO DAMAGING LEVELS OF SOUND Exposure to loud sounds has a damaging effect on the cochlear structures that are so vital for hearing. This risk factor can be mitigated by protecting a person’s ears against such exposure (58) through: • Hearing conservation programmes in occupational settings Hearing conservation programmes can reduce the daily exposure to noise encountered by workers and limit the impact on the cochlear hair cells and therefore on their hearing trajectory (59). As depicted in Figure 2.2, occupational hearing conservation programmes comprise the following: (58–61) i. Engineering and administrative controls for the reduction of noise levels and exposure: These include reducing or eliminating the source of noise; changing materials, processes or workplace layout. Actions may involve purchasing quieter machinery; the segregation of noise sources; installing panels or curtains around the sources, and other such measures. Management policies may involve rotating workers between noisy and non-noisy areas, and ensuring availability of information and ongoing education in this respect. ii. Noise monitoring: Monitoring ensures that noise levels and exposure periods stay within the recommended levels. A level of 85 dBA13 is the maximum permissible sound level for an 8-hour time period in occupational settings (62, 63). If the noise level is higher, the time period needs to be reduced accordingly (based on a 3 dB exchange rate – see Box 2.3). iii. The use of hearing protectors: Use includes the provision of devices such as earmuffs and earplugs, as well as essential training in their correct use. Used correctly, hearing protectors can significantly attenuate noise reaching the ear. iv. Education: Key elements of a hearing conservation programme include education on the effects and control of noise, the impact of hearing loss and its prevention. Workers, especially those working in noisy areas, should be taught about hearing, hearing protectors and surveillance. Information on noise levels, exposure, risk and its mitigation, should also be conveyed through warning signs, information brochures and notifications. v. Hearing surveillance: Monitoring the hearing levels of exposed workers should be conducted through a baseline and regular audiometric evaluation. When an audiometric shift is detected and validated, it is important that suitable action to protect the worker from further exposure is initiated immediately. In addition to regular audiometric evaluation, daily noise exposure monitoring is effective in promoting safe practices. 13 dBA refers to decibels of sound pressure level measured using the A-weighting that is commonly used for measuring occupational and environmental noise exposures. SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 75 Figure 2.2 Components of an occupational hearing conservation programme Hearing conservation programmes were implemented in many European countries at the turn of the millennium. France, Italy, the United Kingdom of Great Britain and Northern Ireland (the United Kingdom), and the Czech Republic have all reported a decline in the incidence of noise-induced hearing loss (NIHL) in recent years. In France, the occurrence of physician-reported NIHL dropped by 17% between 2007 and 2012 (64). Improved implementation of such programmes, along with strict legislation enforcement, can reduce noise levels in workplaces and thereby mitigate the adverse impact on the hearing trajectory of those exposed (58, 60). • Safe listening practices in recreational settings Unlike occupational exposure, people often voluntarily expose themselves to dangerous levels of sounds while listening through headphones, stereo systems, in live music events or concerts, nightclubs, sporting events, the recreational use of firearms and also in fitness classes (66– 68). Safe levels of exposure to leisure noise are described in Box 2.3. HEARING SURVEILLANCE NOISE MONITORING THE USE OF HEARING PROTECTORS EDUCATIONENGINEERING AND ADMINISTRATIVE CONTROLS FOR THE REDUCTION OF NOISE LEVELS AND EXPOSURE The prevalence of noise- induced hearing loss is declining in most industrialized countries, most likely due to the adoption of preventive measures (65).      WORLD REPORT ON HEARING76 Box 2.3 Limits of exposure for leisure noise The maximum exposure level for leisure noise is the equivalent of 80 dB for 40 hours a week (69). The equal energy principle states that the total effect of sound is proportional to the total amount of sound energy received by the ear, irrespective of the distribution of that energy over time and that the amount of energy doubles for every 3 dB increase in intensity of sound (69, 70). Hence, a person may receive the same “noise dose” listening to music at 80 dB for 8 hours a day as listening to 100 dB for about 4 minutes. Taking protective measures while enjoying preferred pastimes is an important factor in affecting a person’s hearing trajectory. Safe listening practices that limit the amount of sound exposure through personal audio devices (71) and at concerts, for example through use of earplugs (72), can help to prevent hearing damage occurring and thereby, potentially maintain hearing capacity over time (66, 67). Specific public health measures can promote these protective behaviours through, for example: i. Development and implementation of school-based hearing conservation programmes: Such programmes educate parents and children and should be based on the Health Belief Model14 and aim to change the listening behaviours of young people who are commonly engaged in unsafe listening (66, 67, 71). Programmes should focus on imparting knowledge of ear hearing, noise, hearing loss and modifiable risk factors; as well as developing skills for safe listening, such as use of hearing protectors; use of isolating earphones; prevention of overexposure through volume reduction (66, 71). At the same time, the programmes should ensure that earphones or noise protectors do not interfere with personal safety. ii. Implementation of the WHO-ITU standard for safe listening devices: Many users of personal audio devices have listening habits that put them at risk of hearing loss (70, 71). Research in other areas related to health suggests that digital platforms, smartphone applications (apps) and mobile health tools can provide a useful means for improving healthy behaviours and lifestyles. Although evidence is currently scarce and uncertain, it is unanimous in acknowledging the potential of such digital platforms to promote healthy behaviours, especially when they are based on sound behaviour change theories; are user-friendly; culturally appropriate; accurate; and personalized (73–78). The use of technology in hearing health and safe listening has not been studied systematically. Nonetheless, based on findings from other health areas, there are promising possibilities for using technology – for example smartphone apps, text messages, computers and the Internet – as a means 14 The Health Belief Model derives from psychological and behavioural theory. It suggests that a person's belief in a personal threat of an illness or disease, together with a person's belief in the effectiveness of the recommended health behaviour or action, will predict the likelihood the person will adopt the behaviour (Rosenstock 1974). (I.M. Rosenstock. The Health Belief Model and preventive health behavior, Health Educ. Monogr., 1 (December (4) (1974), pp. 354–386). SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 77 for changing listening practices and behaviours (57). To facilitate this, WHO, in collaboration with the International Telecommunication Union (ITU) and other stakeholders have made a series of recommendations regarding safe listening features that should be included in smartphones, MP3 players, ear/ headphones and other devices used for listening (see Box 2.4). This global standard can be implemented voluntarily by manufacturers of the relevant devices and also mandated through government policies. Box 2.4 The WHO-ITU H.870 Global Standard for safe listening devices and systems* The WHO-ITU Global Standard aims to regulate exposure to loud sounds through personal audio devices/systems and mitigate hearing loss risk associated with their use. Recommendations state that: 1. Every device shall measure the listener’s use of sound allowance, based on a choice of two modes of reference exposure: • Mode 1 for adults: 80 dBA for 40 hours a week • Mode 2 for sensitive users (e.g. children): 75 dBA for 40 hours a week 2. Each device should include options for volume limiting and parental volume control. 3. Each device shall provide the user with: • personal usage information • personalized messages and cues for action • general information on safe listening * See: https://www.who.int/publications-detail/safe-listening-devices-and-systems-a-who-itu-standard • Noise control in entertainment venues As outlined above, the implementation of noise control legislation in the workplace has been an important and effective strategy. Although occupational noise exposure cannot accurately be compared to the voluntary and pleasurable exposure undertaken as a means for recreation, there are lessons to be learnt from that field. Policies, regulations and their enforcement can influence a person’s behaviour, and success through adopting such interventions is evident in several areas of public health. Examples include the mandatory graphic warnings on cigarette packages, and fines imposed for violating seatbelt-wearing laws (79–82). In view of this, it is believed that the design and implementation of specific legislation that regulates sound exposure and management, while also raising awareness on the risks of loud listening can potentially be effective. It is 18 Today’s sound allowance Sound track #5 Disclosure 51.6% Time left: 01:14:17 Today’ Listening time: 37 min Average dB level (leg) : 93.3 dB 90 80 70 60 50 40 30 20 10 0 52% Today’s sound allowance 52% Today’s sound allowance Sound track #5 Disclosure 119.5% Time left: 01:14:17 Today’ Listening time: 37 min Average dB level (leg) : 93.3 dB 90 80 70 60 50 40 30 20 10 0 119.5% Today’s sound allowance 52% Figure 2: Examples of information provided on a smartphone visual interface for safe listening. (Reproduced with kind permission from ITU H.870) The device (if capable) should display: • the average sound level for the day and week. • the time for which the user has listened in hours and minutes over the day and the week. Personalized recommendations and cues for actions for safe listening, customized based on each user’s listening profile The device should give relevant warnings and cues for actions when the user reaches pre-determined levels of exposure (e.g. 80%) and exceeds 100% of the weekly allowance. • The user should receive a “warning” expressed through text and graphics or an icon, informing them that a threshold has been reached and that from this point on, further listening at the same volume will pose a risk for their hearing. accessible to users in order to allow them to keep track of their exposure to sound through the device. In case of devices with a screen, this could be through an icon on the screen (Figure 2 gives an example of information provided on a smartphone visual interface for safe listening). Through the icon, he user should be able to see their use of daily or weekly sound allowance in an easy-to-understand way, e.g. the person may be able to view how much of the weekly sound allowance has been used and how their listening behaviour has been over the past week. In devices without a screen, the information should be made available through other means, such as audio cues. Integration of safe listening features in smartphones is making it easy for people to practice safe listening © IT U H. 87 0 WORLD REPORT ON HEARING78 anticipated that as regulation becomes more widespread, and the number of compliant venues increases, it will increase the acceptability of protective hearing behaviours (83). To this end, WHO is developing an evidence-based “Framework for control of sound exposure in recreational venues”, with finalization due in 2021. Components of this global framework include: sound level limits; measurement of sound; provision of hearing protection; dissemination of information and warning messages; quiet areas; and sound distribution and management. CASE STUDY Switzerland takes steps to address hearing loss due to recreational sound (84) Switzerland has the longest-standing active sound regulations for entertainment venues in the world. The Federal Office of Public Health of Switzerland published the first Sound Levels and Laser Ordinance in 1996, regulating those recreational venues where the audience is exposed to electroacoustically-generated or amplified sounds (e.g. in clubs, concert halls, bars, restaurants, festivals, discotheques). The regulations have been developed and revised (the latest revision being in 2019) in close collaboration with the Swiss music industry. The regulations are now well accepted by all stakeholders including the venues where they have to be implemented. The regulations direct venues to: (i) limit the average hourly sound levels to 100 dBA; (ii) measure and record sound levels; (iii) provide free ear plugs to the audience; (iv) prominently display information and posters on safe listening; and (v) provide “quiet areas” for events whose duration exceeds three hours. Since implementation, each Swiss canton has enforced these regulations. As a possible consequence, 39% of attendees at festivals in Switzerland now wear hearing protection – a considerably higher percentage than reported in other countries. SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 79 EFFECTIVENESS OF NOISE REDUCTION MEASURES • The adoption and strict implementation of legislation is effective in reducing noise levels in the workplace, and thereby limits exposure faced by workers and reducing hearing loss occurrence (60, 64, 85, 86). For example, legislation directed at better compliance with the law regarding engineering and administrative control in the mining industry succeeded in reducing noise exposure in underground coal mines by 27.7% (60). • The use of properly fitted hearing protection devices is an effective measure, especially when accompanied by appropriate training in their use (60, 87, 88). • Limited research has been carried out to date on the effectiveness of programmes for promoting safe listening among youths; nonetheless, available data reinforces the importance of health promotion for changing listening behaviours and the role of technology in doing so. CASE STUDIES Raised awareness and policy measures can prevent hearing damage during work and leisure 1. An effectiveness analysis of a military hearing conservation programme in the USA showed such programmes to be both effective (workers were 28% less likely to acquire hearing loss) and economically viable. The programme reported an incremental cost–effectiveness ratio of US$ 10 657 per case of hearing loss prevented compared with no intervention. This is significantly lower when compared with the average compensation costs of US$ 64 172 for such occupational noise-induced hearing loss per individual (89). 2. Preventive campaigns can be successful in altering attitudes towards noise in adolescents, leading to a more positive view of hearing protection, and increased intention to use them in a high-school population. The Flemish government undertook a campaign among high-school students, focusing on the harmful effects of recreational noise and the preventive use of hearing protection. The attitudes and practices of the students were assessed before and after the campaign and based on the model of the theory of planned behaviour. Results were very promising, with the use of hearing protection increasing from 3.6% prior to the campaign to a subsequent 14.3% (90). WORLD REPORT ON HEARING80 OTOTOXICITY PREVENTION As indicated in Section 1, some commonly used medicines can seriously impact the auditory pathway and lead to permanent hearing loss. Prevention of such ototoxic hearing loss is possible through judicious use of these medicines and regular auditory monitoring during use, when necessary. Ototoxic hearing loss can also occur as a result of exposure to chemicals that are commonly encountered in industries such as printing, construction and manufacturing (see Section 1). Taking due care with their use, along with hearing surveillance, can mitigate the auditory risks posed to those exposed. • Chemical exposure in the workplace It is possible to prevent the adverse effects of exposure in the workplace through taking concrete steps, including: (91, 92) – the initial identification of hazardous materials; – controlling exposure through substitution, where possible (if not possible, using engineering controls and administrative measures to minimize exposure); – the use of personal protective equipment, such as chemical-protective gloves, aprons etc. to reduce dermal exposure; – the labelling of chemicals that are known to be ototoxic and displaying warnings clearly; and – hearing surveillance (further information on noise-related hearing surveillance is provided in 2.2.4). • Appropriate use of ototoxic medicines The risks posed by the unregulated use of ototoxic medicines for hearing are detailed in Section 1. While in many cases, the use of these medicines may be necessary and even life-saving, their judicious and regulated use is essential to ensure that people do not receive them unnecessarily. Wherever possible, safe and effective non-ototoxic treatment options should be sought and preferred over those likely to have a lasting negative impact on hearing (93). Recent developments in the management of drug resistant tuberculosis (DR-TB) are an example of how this can be achieved. The recently updated WHO guidelines on DR-TB recommend the use of non-injectables such as Bedaquiline (94) in the treatment of tuberculosis, to protect against the high risk of hearing loss associated with the traditionally used injectables (95). Where ototoxic medicines are essential, particularly in the management of cancer, tuberculosis, malaria and other diseases, audiological monitoring is crucial to optimize hearing-related outcomes (93). SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 81 • Monitoring ototoxicity Ototoxicity is detected in an individual by regular audiometry to monitor the auditory response and thresholds, and to determine changes in auditory function or damage over the course of treatment. Ototoxicity monitoring assists with: – comparing the auditory test results during the course of drug therapy; – early identification of change in hearing; – need for potential alterations in therapy; – prevention of debilitating ototoxic-induced hearing loss if therapy is changed; and – auditory rehabilitation to minimize the negative impact of ototoxicity (93). EFFECTIVENESS OF OTOTOXICITY PREVENTION MEASURES • Audiological monitoring undertaken during the use of ototoxic medicines, such as those used for treatment of multidrug resistant tuberculosis, can help recognize the early signs of hearing loss. It can provide timely indication and opportunities for shifting to alternate treatment regimens as a means of conserving the individual’s hearing capacity (93, 96). • The adoption and implementation of such protocols by professionals and governments cannot be considered as optional; given that these are essential in improving patient outcomes and quality of life, they should form the minimum standards of care in ototoxicity management (97, 98). CASE STUDY South Africa takes steps to address ototoxic hearing loss* Multi-Drug Resistant Tuberculosis (MDR-TB) is often treated with injectable agents that can cause permanent ototoxic hearing loss. A study conducted in South Africa, showed that within 3 months of in-hospital aminoglycoside therapy, 57% of patients developed high-frequency hearing loss. This gave cause for alarm given that South Africa is among countries with the highest burden of tuberculosis and HIV. Amikacin and streptomycin are to be considered only if high- quality audiometry monitoring for hearing loss can be ensured (94). A person undergoes hearing testing to detect high-frequency hearing loss © R at na A ng gr ae ni , I nd on es ia WORLD REPORT ON HEARING82 To address this public health problem, the South African National Tuberculosis Control Programme (NTP) implemented the National Ototoxicity Prevention Programme to improve access to audiological monitoring with the aim of reducing incidence of ototoxic hearing loss. The objectives of the programme were to: conserve the hearing of DR-TB patients treated with injectables; ensure availability of portable audiometric services; and ensure rehabilitative care through appropriate care pathways for those who developed hearing loss. Implementation was carried out in five phases: (i) exploration – conducting a situational analysis of the DR-TB cases and selecting audiometric devices; (ii) programme definition – developing an evidence-based ototoxicity monitoring protocol; (iii) execution – establishing an audiology network to support the programme and to secure funding; (iv) establishing and strengthening the referral patient-care pathway; and (v) implementation. As part of the implementation, NTP procured and distributed 183 portable automated audiometers to provide audiometric screening for monitoring ototoxic hearing loss. Training support was provided to strengthen and support screening and early identification of hearing loss in patients treated with aminoglycosides. Audiometers were distributed nationally to selected health facilities, which included government-run district hospitals, TB hospitals, community health centres and primary health-care facilities. Baseline hearing assessments were undertaken at the start of therapy, and then at regular intervals during, and post, the injectable phase of DR-TB treatment among all DR-TB patients. In a resource-limited setting such as South Africa, the outcome of this intervention resulted in reducing the waiting time for patients to be screened and linked to rehabilitative audiological services. Between 2014 and 2019, 33 490 hearing tests were performed on DR-TB patients across South Africa among whom, 56% were identified as high-risk to develop permanent hearing loss. All patients were monitored on a monthly basis and received rehabilitation services. The programme allowed South Africa to quantify the number of patients at risk of developing hearing loss due to aminoglycosides administration; this evidence contributed towards the introduction of an injection-free MDR-TB regimen in June 2018. Further, in noting the declining need for hearing screening among DR-TB patients, audiometers were re-allocated, particularly at primary health- care level. This transition served to strengthen universal access to hearing screening across the country. The programme provided many excellent health systems-based lessons which could be leveraged to mitigate against ototoxicity in oncology care, and requires urgent consideration (99). * Source: a report (unpublished) submitted to WHO by the Government of South Africa. SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 83 It is possible to identify hearing loss at all ages and in all settings. 2.3 EARLY IDENTIFICATION OF HEARING LOSS Early identification is the first step in addressing hearing loss. Since hearing loss is invisible, it often remains undetected. In the cases of infants and older adults, this can have negative consequences on rehabilitation outcomes and cognition. For this reason, it is important to establish special measures to screen for hearing loss at different stages across the life course, targeting those most likely at risk. As shown in Figure 2.3, those targeted include: • newborns and infants; • children, especially in pre-school and school settings; • adults, especially older adults; and • all who are at a higher risk of hearing loss across the life course, due to exposure to noise, ototoxic chemicals and ototoxic medicines. Figure 2.3 Identifying hearing loss across the life course Figure 2.3 Identifying hearing loss across the life course NEWBORN: Newborn hearing screening CHILDREN: Pre-school and school ear and hearing checks ADULTS: Hearing screening in high risk occupations OLDER ADULTS: Regular hearing screening ACROSS THE LIFE COURSE: Screening for hearing loss Symptomatic testing WORLD REPORT ON HEARING84 Technological development and research has made it possible to undertake such screening, as detailed below. 2.3.1 IDENTIFICATION IN NEWBORNS Given the important role of hearing in a child’s development and learning, it is essential to address hearing loss at the earliest time possible (100, 101). Early identification in newborns is made possible through screening. THE IMPORTANCE OF SCREENING PROTOCOLS IN NEWBORNS Hearing screening in newborns, when followed by prompt and appropriate interventions, is effective in ensuring that those born with significant permanent hearing loss do not experience the associated adverse impacts (102–108). Screening generally follows one of two approaches: (i) universal screening, which covers all infants; or (ii) “at-risk” screening, which targets the 8–10% of newborns at risk of permanent hearing loss (109); when neither strategy is feasible, screening can also be opportunistic (for example when a parent suspects hearing loss and takes their child to be screened). “At-risk” screening typically includes infants who have an identifiable risk factor for hearing loss. However, since only around 50–60% of infants with permanent hearing loss show risk indicators (109), an unacceptably high proportion can be missed through this selective strategy; thus wherever possible, a universal approach is preferred (110–112) (see Box 2.5). Box 2.5 Universal screening is the goal A population study on the long-term outcomes of children identified with permanent hearing loss contrasted three screening programmes: a universal programme; an “at-risk” programme; and an opportunistic programme. Results demonstrated the clear benefits of a universal programme, in terms of age of diagnosis; receptive and expressive language; and receptive vocabulary (in children without intellectual disability), when compared with the other two screening types (113). Nonetheless, in environments with no screening programmes, and where resources are lacking, opportunistic screening could form a first step towards implementation of other more effective programmes. AVAILABILITY OF TOOLS FOR EARLY IDENTIFICATION (114, 115) Widespread hearing screening of newborns has been made possible by the development of portable, objective automated devices. Universal screening uses either automated transient-evoked otoacoustic emissions (TEOAEs), which assess Hearing screening must be accompanied by appropriate follow- up and interventions as the benefits of early detection are associated with early intervention rather than screening per se. SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 85 outer hair cell function; or automated auditory brain response (AABR) testing, which assesses the integrity of the auditory neural pathway to the auditory brainstem (114). Such screening can be undertaken as early as the first day of birth. Accurate diagnosis can also be established within the first month of life by performing the Auditory Brainstem Response (ABR) testing or Auditory Stead State Response (ASSR) measurements (116, 117) as recommended by the Joint Commission on Infant Hearing Screening (118). While screening in itself is an important part of an early intervention programme, it must be accompanied by appropriate follow-up and rehabilitation (119, 120). There is ample evidence to demonstrate that children benefit significantly when newborn hearing screening is coupled with early intervention programmes (often referred to as early hearing detection and intervention (EHDI) programmes), and that effectiveness increases the earlier the child (and family) is identified and rehabilitation starts (102–108, 121). An example of what is included in a high-quality EHDI programme is provided in Box 2.6. Box 2.6 Early hearing detection and intervention High-quality early hearing detection and intervention (EHDI) programmes include: (122, 123) • universal newborn hearing screening; • ongoing surveillance for newborns who are “at risk” of hearing loss but who passed the screening programme at birth; • comprehensive diagnostic assessment to confirm and quantify the magnitude and type of the hearing loss; • parental participation and family engagement; • social, psychological and informational support for families of children diagnosed with permanent hearing loss; • medical referral for etiologic investigation and management as indicated; • assistive hearing technologies including hearing aids, cochlear implants, FM systems; adjunctive counselling, information, and training to support the technologies; and • communication development options, including auditory-verbal therapy, sign language development, and other related interventions. Technological development and research has made it possible to undertake such screening, as detailed below. 2.3.1 IDENTIFICATION IN NEWBORNS Given the important role of hearing in a child’s development and learning, it is essential to address hearing loss at the earliest time possible (100, 101). Early identification in newborns is made possible through screening. THE IMPORTANCE OF SCREENING PROTOCOLS IN NEWBORNS Hearing screening in newborns, when followed by prompt and appropriate interventions, is effective in ensuring that those born with significant permanent hearing loss do not experience the associated adverse impacts (102–108). Screening generally follows one of two approaches: (i) universal screening, which covers all infants; or (ii) “at-risk” screening, which targets the 8–10% of newborns at risk of permanent hearing loss (109); when neither strategy is feasible, screening can also be opportunistic (for example when a parent suspects hearing loss and takes their child to be screened). “At-risk” screening typically includes infants who have an identifiable risk factor for hearing loss. However, since only around 50–60% of infants with permanent hearing loss show risk indicators (109), an unacceptably high proportion can be missed through this selective strategy; thus wherever possible, a universal approach is preferred (110–112) (see Box 2.5). Box 2.5 Universal screening is the goal A population study on the long-term outcomes of children identified with permanent hearing loss contrasted three screening programmes: a universal programme; an “at-risk” programme; and an opportunistic programme. Results demonstrated the clear benefits of a universal programme, in terms of age of diagnosis; receptive and expressive language; and receptive vocabulary (in children without intellectual disability), when compared with the other two screening types (113). Nonetheless, in environments with no screening programmes, and where resources are lacking, opportunistic screening could form a first step towards implementation of other more effective programmes. AVAILABILITY OF TOOLS FOR EARLY IDENTIFICATION (114, 115) Widespread hearing screening of newborns has been made possible by the development of portable, objective automated devices. Universal screening uses either automated transient-evoked otoacoustic emissions (TEOAEs), which assess Hearing screening must be accompanied by appropriate follow- up and interventions as the benefits of early detection are associated with early intervention rather than screening per se. WORLD REPORT ON HEARING86 EFFECTIVENESS OF NEWBORN HEARING SCREENING PROGRAMMES When followed by prompt and suitable rehabilitation, the screening of newborns brings significant advantages in terms of reducing the age of diagnosis and intervention, as well as improved language and cognitive development (100, 124– 127). These advantages translate into improved social and educational outcomes for infants who receive timely and suitable care. Cost–effectiveness of newborn hearing screening is demonstrated in studies from high-income countries such as Australia, Netherlands, the United Kingdom, and the USA, as well as middle-income countries such as China, India, Nigeria and Philippines (128). In China, for example, a long-term cost benefit ratio of 1:7.52 was reported (129), and in India, a cost analysis revealed life-time savings (including societal costs) of over 500 000 International dollars per case identified (130). VALUE FOR MONEY! WHO conservatively estimated a return on investment from newborn hearing screening in a lower-middle- and a high-income setting. Results, based on actual costs, estimated that in a lower-middle-income setting (taken as an example) there would be a possible return of 1.67 International dollars for every 1 dollar invested in newborn hearing screening. With a high- income country, this return was estimated to be 6.53 International dollars for every 1 dollar invested. In addition, the lifetime value of DALYs averted in each individual would be 21 266 International dollars, and the net monetary benefit 1.21 dollars. In the case of a high-income setting, the value of DALYs averted would be 523 251 International dollars. A study undertaken in the USA (110) projected that the reduced costs of special education services could plausibly offset the cost of universal newborn hearing screening (UNHS) within a space of 10 years (131). In 2006, it was estimated that UNHS saves an estimated 4500 euros in Germany per hearing impaired child, per year (125). In Philippines, a UNHS being implemented since 2009 has resulted in considerable long- term savings (132, 133). SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 87 CASE STUDY Implementing a national newborn hearing screening programme brings benefits to infants with hearing loss in Israel The Israeli Newborn Hearing Screening Program (NHSP) was implemented on a national level in 2010, with the aim of ensuring that all infants were screened for hearing loss before 1 month of age; those with hearing loss were diagnosed no later than 3 months of age; and rehabilitation initiated by the time the child reached 6 months. In 2019, a study evaluated the effectiveness of this programme and found that within 3 years of commencement, the programme had a high coverage, with 98.7% of the 179 000 infants born annually between 2014 and 2016 being screened through this programme. As a result, the average age of hearing loss diagnosis reduced from 9.5 to 3.7 months. Children with hearing loss started receiving intervention by a median age of 9.4 months (as opposed to 19 months before NHSP implementation). In 2019, it was assessed that as an outcome of this programme, children received a cochlear implant at the relatively earlier age of 1.75 years, improving their consequent rehabilitation outcomes (134). 2.3.2 IDENTIFICATION IN PRE-SCHOOL CHILDREN AND IN SCHOOL SETTINGS Although, screening in newborns has improved the ability to identify and address congenital hearing loss, children who have experienced minimal hearing loss at birth, and those whose hearing loss is progressive or develops later in childhood (e.g. from middle ear disease), often remain unidentified and without care. Early identification of these conditions, especially ear diseases in children, and connecting them to care, is critical for the provision of effective hearing care. SCREENING AS PART OF SCHOOL HEALTH INITIATIVES Given that, worldwide, the vast majority of children go to school (135), school screening represents a unique opportunity to conduct universal hearing screening. School screening programmes can be a useful tool in mitigating the effect of unaddressed hearing loss and ear diseases (136); and for educating children regarding practices that help maintain their hearing trajectory (as part of overall health), such as safe listening (see section 2.2.4). Positive experiences with respect to the overall impact of school health programmes have been reported by a number of international agencies such as WHO, UNICEF, WORLD REPORT ON HEARING88 UNESCO and the World Bank (137) which, together, have developed a partnership: Focusing Resources on Effective School Health (FRESH). Given the importance of hearing in education; the frequency of ear and hearing problems in school-age children; and the need to inculcate safe listening behaviours at an early age, the inclusion of ear and hearing care in school health services and initiatives is essential. TOOLS AND TECHNOLOGY-BASED OPTIONS FOR SCREENING AND TESTING Several tools are available for facilitating hearing screening in school settings. Audiometric evaluation has been shown to be accurate in assessing hearing in school-age children (138). However, the application of such screening is often limited in low-resource settings or remote areas due to several factors including the high cost of equipment; requirements for intensive training of screeners in audiometric principles; overreferrals; lack of environmental noise monitoring; and poor data capturing and management (139, 140). Other technology-based options have recently emerged that have facilitated conduct of hearing screening in school settings. These include tools such as: • mobile-based software applications • automated hearing screening • boothless audiometry • telemedicine options. These options are described in more detail in section 2.4.4. Besides hearing assessment, other tests commonly used in a school ear and hearing screening service include: i. Otoscopic examination: This examination identifies common problems of the outer or middle ear. Besides traditional otoscopic examination, other technology-based solutions, such as smartphone-based otoscopy apps, are available (141, 142). Otoscopic examination can also be supported by telemedicine options (142, 143). ii. Tympanometry: This assesses middle ear function and diagnoses nonsuppurative otitis media (138). iii. Otoacoustic emission testing (OAE): This testing is relevant mostly in situations where children are unable to follow instructions, e.g. in pre-school-age children or children with special needs (144). EFFECTIVENESS OF SCHOOL SCREENING PROGRAMMES To ensure the effectiveness of school screening programmes it is important that a referral system is in place and that children requiring further investigations and management should have access to services (136, 145). It is essential to outline the SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 89 A child in South Africa undergoes hearing testing using automated audiometry and noise- cancelling headphones © H ea r t he W or ld F ou nd at io n care pathway and follow-up mechanisms at the time of intervention planning so that full benefits can be realized. • Children with progressive hearing loss may pass the newborn hearing screening, but later be identified through pre-school or school-based ear and hearing checks (132, 135). Systematic screening in children, followed by appropriate care, can lead to timely identification and remediation of common ear diseases. Such programmes are especially useful where prevalence of common ear diseases and hearing loss is high. • School hearing screening programmes represent an opportunity to reduce the health and economic burden of childhood hearing loss. However, to date, economic analyses performed on this topic are few in number and have mixed conclusions. While, overall, the studies have found school screening to be cost– effective, substantial uncertainty exists due to methodological differences; moreover, external validity of the available data is limited (147–151). An effective school health programme can be one of the most cost– effective investments a nation can make to simultaneously improve education and health. WHO promotes school health programmes as a strategic means to prevent important health risks among youth and to engage the education sector in efforts to change the educational, social, economic and political conditions that affect risk. (146) WORLD REPORT ON HEARING90 Further research in this area is urgently needed to create standards for cost evaluations and to develop generalizable, region-specific estimates that can be translated to countries considering implementing school screening. CASE STUDY Implementation of school hearing screening in Poland helped to identify children with hearing loss (152) Between March and June 2008, a school hearing screening programme was implemented in the rural areas and small towns of Eastern Poland, reaching more than 92 000 children aged 7–12 years. In 2010, the programme was further implemented in the western part of the country, as part of the “Sensory organs examination” which included check-ups for ears, hearing and eyes. More than 71 000 first-graders were examined in 4041 schools, of whom nearly 14% were identified with hearing loss and referred for further care and treatment. Particularly concerning was that over 58% of parents of those identified with hearing loss did not realize that a problem existed for their child; 27% of children had never had a hearing check-up except as a newborn (newborn hearing screening programme); and 41% were not receiving any specialist care to address their hearing loss. Without the screening, it is likely that the majority of those with hearing loss would have remained unidentified. 2.3.3 IDENTIFICATION IN OLDER ADULTS Given the global demographic trends (153), the need for hearing care among the adult population is likely to continue to increase in the coming decades (154). Global Burden of Disease estimates suggest that over 65% of the global population above the age of 60 years experiences some degree of hearing loss. Despite the functional limitations associated with hearing loss (155), adults typically wait as much as nine to ten years before seeking any hearing care (156, 157). To address this gap, it is essential to provide active screening services for older adults in an easy and accessible manner, followed by suitable interventions. Such screening can be undertaken by health-care providers, such as general practitioners, primary level doctors or health workers (156, 158). To support this, the WHO guidelines for integrated care of older persons recommends that screening, followed by the provision of hearing aids, should be offered to older people (see Box 2.7). School screening programmes must be linked with ear and hearing services, so that children have access to required care, and undertake follow-up to ensure that they do so. SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 91 Box 2.7 Recommendation 4 of WHO guidelines for integrated care for older people (155) Recommendation 4 states that screening, followed by provision of hearing aids, should be offered to older people for the timely identification and management of hearing loss. Important considerations for implementation include: 1. Community awareness about hearing loss should be promoted, along with the positive benefits of audiological rehabilitation in older people through community case finding and outreach activities. 2. Health-care professionals should be encouraged to screen older adults for hearing loss by periodically questioning them about their hearing. Audiological examination, otoscopic examination, and the whispered voice test are also recommended. 3. Hearing devices are the treatment of choice for older people with hearing loss because they minimize the reduction in hearing and improve daily functioning. 4. Medications should be reviewed for potential ototoxicity. 5. People with chronic otitis media or sudden hearing loss, or who fail any screening tests, should be referred to an otolaryngologist. EFFECTIVENESS OF HEARING SCREENING IN OLDER ADULTS • In older adults, hearing screening, followed by prompt hearing aid provision, is associated with significant improvements in hearing-related health outcomes (155, 159, 160). • Adult hearing screening and early intervention become even more relevant given the links between hearing loss and dementia in older adults (161), and that addressing hearing through these devices may have a positive influence on an individual’s cognition. • Hearing conservation programmes implemented for the reduction of noise- induced hearing loss in factories and military services have been shown to be cost–effective (89, 162). Although the cost–effectiveness of hearing screening in older adults has not been studied extensively, limited available literature describes a positive improvement to the quality of life of older adults, as well as economic gains to society (156, 163, 164). VALUE FOR MONEY! WHO made a conservative estimation of return on investment from hearing screening for adults aged above 50 years. Results based on actual costs estimated a possible return of 1.62 International dollars for every 1 dollar invested in hearing WORLD REPORT ON HEARING92 screening among older adults in a high-income setting, and 0.28 International dollars in a middle-income setting, taken as examples. In addition, the lifetime value of DALYs averted for 10 000 individuals screened would be 8 877 785 International dollars. In the case of a high-income setting, the value of DALYs averted would be 788 604 dollars for a similar population. Further details are provided in WEB ANNEX B. CASE STUDY Hearing screening in older adults is a cost–effective strategy An economic model evaluated the financial implications and gains from an adult hearing screening followed by service provision as opposed by hearing care based on referrals made by general practitioners (GPs) in the United Kingdom. Costs considered included the full package of care, with assessment, hearing aid fitting, hearing aid device/s, follow-up and repair. The total cost of services increased significantly from £ 21 million to £ 38 million per 100 000 population. It also showed that up to 30 000 QALYs (quality-adjusted life years) could be gained per 100 000 cohort as a result of the screening programme, resulting in a justifiable cost per QALY ratio. Screening was shown to offer greater gains at greater costs compared with GP referral, with a favourable incremental cost– effectiveness ratio valued at £ 1000–£ 2000. It reached the conclusion that screening for bilateral hearing loss from the age of 55 years and above offered the best potential public health gain and is a cost–effective means of improving participation and quality of life for older adults (163). 2.3.4 IDENTIFICATION OF THOSE AT HIGHER RISK Individuals and populations at a greater risk of hearing loss commonly include those: • exposed to noise or ototoxic chemicals at the workplace; and • receiving ototoxic medicines. Targeted hearing surveillance is an integral part of occupational hearing conservation programmes as well as ototoxicity prevention, as described earlier. Such surveillance not only provides a means for early detection, but also serves as an early warning. Preventive measures, if taken immediately upon identification, can reduce progression of hearing loss in those exposed to ototoxic influences. Using the tools and strategies outlined above, early diagnosis of hearing loss is possible, even in resource-limited settings. Screening programmes targeting different risk groups can ensure that all persons with hearing loss have the possibility of being identified in time for them to benefit from rehabilitation services and avoid SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 93 the adverse impacts of hearing loss. For this reason, it is essential that all screening services are supported by appropriate diagnostic follow-up and rehabilitation. 2.3.5 INNOVATIVE SCREENING SOLUTIONS ACROSS THE LIFE COURSE Hearing screening can be undertaken either through conventional screening audiometry or technology-based solutions tools (156, 165); screening is facilitated by the development of mobile-based software applications (142, 166, 167) which provide tools that are cost–effective and easy to use. The range of tools include: AUTOMATED HEARING TESTING (142, 168–170) This reduces the need for training as the technology used can be programmed to provide the signal and analyse the individual’s response. DIGITS-IN-NOISE TEST (171–173) This is based on speech recognition in noise and provides a functional measure as it relates to speech recognition abilities rather than pure tone averages. It is both accurate and quick; and can be administered online, through mobile applications, and in community settings (172, 174–177). Based on the validated South African digits-in-noise test (“hearZa”) (177, 178), the World Health Organization has developed and launched the free smartphone applications “hearWHO” and “hearWHOpro” that can be used by individuals and health workers to check for hearing loss (Box 2.8). Boothless audiometry makes hearing care accessible © S ee m a Ru pa ni S ha h WORLD REPORT ON HEARING94 Box 2.8 Smartphone applications developed by WHO • The hearWHO app is based on validated digits-in-noise technology. It gives the general public access to a free, validated hearing screener to check their hearing status and to monitor it over time. The easy-to-use app clearly displays the users’ results and keeps a personalized tracked record of their hearing status over time. It is available in both android and iOS formats. • The hearWHOpro version can be used by health workers to screen people in the community for hearing loss and refer them for diagnostic testing if they fail the screening. Other technology-based solutions include: BOOTHLESS AUDIOMETRY This is a means of testing without the need for a sound booth. As an example, audiometry can be done through the use of noise-cancellation headphones (140, 167, 168, 179), which provide an effective adjunct for audiological testing in community settings, such as schools. TELEMEDICINE SERVICES (139, 143, 180) Telemedicine is the delivery of health-related services and information via telecommunications technologies. Teleotology and teleaudiology use telemedicine to provide otological and audiological services remotely. Audiological findings and otoscopic images are transmitted, commonly over the internet, from the point of contact with the individual to an expert at a remote location. The diagnosis (and where mandated management options) can be then transmitted back to the individual (181, 182). These offer a valid solution to the discrepancies apparent in the need for health-related services and their limited availability. Early diagnosis of hearing loss is possible using the tools and strategies outlined above, even in resource-limited settings. Screening programmes targeting different risk groups can ensure that all individuals with hearing loss have the possibility of being identified in time for them to benefit from rehabilitation services and avoid the adverse impacts of hearing loss. For this reason, it is essential that any screening service be supported by appropriate diagnostic follow up and rehabilitation. SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 95 Addressing hearing loss requires a person- centred approach that takes a holistic overview of person’s clinical profile, communication needs, preferences, environment, and fits the resources available. 2.4 CARE AND REHABILITATION Once a person has been identified with an ear or hearing condition, he or she can benefit from a range of clinical, rehabilitative and environmental interventions currently available. The nature, degree and progression of hearing loss, along with any underlying or accompanying health conditions (e.g. otitis media, otosclerosis etc.), determine the clinical profile of an individual, although people with the same clinical profile can have very different everyday hearing care needs (183). This is because the impact of hearing loss depends not only on the clinical profile, but also on contextual factors such as communication needs, environmental factors and access to rehabilitation (10, 184, 185). 2.4.1 A PERSON-CENTRED APPROACH TO EAR AND HEARING CARE AND REHABILITATION Adopting a person-centred approach is essential for determining an individual’s hearing care and rehabilitation needs. As illustrated in Figure 2.4, person-centred ear and hearing care involves an understanding in terms of their clinical profile, communication needs and preferences and the resources available. Two people with the same audiogram configuration can have very different everyday hearing- related difficulties and experiences. WORLD REPORT ON HEARING96 Figure 2.4 Person centred ear and hearing care Hearing loss that accompanies ear diseases, such as otitis media or otosclerosis, can generally be treated through medicines or surgery (as described earlier in section 2.2). However, the majority of hearing loss is irreversible, and rehabilitation is required at all stages during the life course. Rehabilitation is essential to improve function, activity, participation and ultimately offer a better quality of life for people with hearing loss (186). Figure 2.5 depicts the different approaches to rehabilitation adopted; these include: (i) hearing technology in the form of hearing aids, cochlear implants and implantable hearing aids; (ii) sign language and other sensory substitution such as Braille, Tadoma, print on palm, and speech- reading; and (iii) rehabilitative therapy, such as Total Communication and hearing and speech therapy. Rehabilitation aims to optimize everyday functioning of those with hearing loss to ensure that the person reaches the best quality of life at a physical, functional, social, emotional and economic level. Figure 2.4 Person centered ear and hearing care AVAILABLE RESOURCES What resources are possible given the environment, health infrastructure and clinical services available CLINICAL PROFILE – WHICH INCLUDES: Otological status Audiological profile: degree; type; age of onset Other functional limitations such as visual impairment; developmental disabilities e.g. autism COMMUNICATION NEEDS – WHICH INCLUDE: Hearing difficulties experienced Communication requirements COMMUNICATION PREFERENCES – SUCH AS: Oral–aural Visual/tactile SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 97 Figure 2.5 Approaches to hearing rehabilitationFigure 2. pproaches to hearing rehabilitat on Approaches to rehabilitation include: Total communication Hearing and speech therapy Sign language Other means of communication Hearing aids Cochlear implants Implantable aids HEARING TECHNOLOGY SIGN LANGUAGE AND SENSORY SUBSTITUTION REHABILITATIVE THERAPY 2.4.2 HEARING TECHNOLOGY FOR REHABILITATION Hearing technology, to enhance or enable auditory perception, forms a key component of hearing rehabilitation. The use of such technology gives users increased access to information carried through sound and speech (187). Although technology is a key part of rehabilitation, it is essential nonetheless to note that it forms only one part of a rehabilitation strategy. The different types of hearing technology include hearing aids and implants as described below. HEARING AIDS Hearing aids (186, 188–191) are a noninvasive, low-risk and effective option most frequently used to rehabilitate hearing loss (192). (The different types of hearing aid are described in Box 2.9 below.) The vast majority of people with hearing loss are adults who experience mild to moderate degrees that pose difficulties in their day-to-day life. This level of hearing loss can be well addressed through the use of hearing aids that improve quality of life and listening ability. Even in cases of people with severe hearing loss, those with cognitive impairments (193), and in children (194, 195), hearing aid use can improve the ability to perceive sensory inputs and functional outcomes. These functional outcomes, however, are not merely the result of hearing amplification, but depend on other supportive interventions and factors. WORLD REPORT ON HEARING98 Box 2.9 Hearing aids Hearing aids are devices that amplify and deliver sound to the ear in order to improve auditory function. They can be analogue or digital. Analogue hearing aids: pick up sound energy, change it to electrical signals which are amplified and delivered through the ear canal to the ear drum. Digital hearing aids: perform the same key function as analogue hearing aids, but can be programmed to suit individual audiological needs. They commonly allow for many additional features and are generally the preferred option. In determining which type of hearing aids to provide, countries should follow recommendations, outlined in the WHO’s “Preferred profile for hearing aid technology suitable for low- and middle-income countries” (196). COCHLEAR IMPLANTS Cochlear implants are electronic devices, especially useful when a conventional hearing aid has little or no benefit or cannot be used (192). Typically, these devices bypass the middle- and inner-ear structures to stimulate the auditory nerve directly (197), and can give a deaf person a useful representation of sounds in the environment, making it possible to understand speech. A description of how a cochlear implant works is provided in Box 2.10 and illustrated in Figure 2.6. Their use in children with severe degree of hearing loss has brought substantial benefits to those implanted, and when accompanied by proper rehabilitation they lead to significant improvement in audiological status, overall functioning and speech perception skills (198). Children with cochlear implants have greater likelihood of acquiring oral language, integrating into regular schools and being able to experience sounds along with better speech skills (199, 200). Cochlear implants can also have a beneficial impact on learning and educational outcomes as well as the overall quality of life, though many factors other than implantation influence these results (201–203). In recent years, the scope of implantation has been expanded to adults with severe to profound sensorineural hearing loss, who show improved speech perception and health-related quality of life with their use (202, 204). A health economic analysis showed an incremental cost– effectiveness ratio of $ 5759 per quality- adjusted life year gained for hearing aid use (versus no hearing aid use). SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 99 CASE STUDY India takes steps to improve access to hearing technologies* In 2006, the Indian government launched the National Programme for Prevention and Control of Deafness. In recent years, in some states of the country, the scope of this programme has been expanded to include cochlear implantation. The Ministry of Social Welfare of India, through its scheme for assistance to people living with disability, has provided funding for the fitting of 500 cochlear implants each year. To facilitate this, the government has empanelled 172 centres, including government and private hospitals, to perform cochlear implant surgeries, along with more than 300 professionals to provide post- operative rehabilitation. In the southern state of Tamil Nadu (with a population of over 67 million), the government has taken special heed of the high prevalence (0.6%) of congenital deafness in the state by including free cochlear implantation for children up to the age of six years, whose parents meet the economic criteria. In order to ensure successful rehabilitation of the implantees, the government has created a unique “hub and spoke” model of service provision with the creation of satellite service centres in underserved rural areas. Support in these centres is provided in person, by a trained workforce, as well as remotely through telemedicine. As a result, follow-up rates among implantees have jumped from 50% to 90%. This unique approach addresses an immense need in the state, and provides a scalable model for other states of India, and other low- and middle-income countries, to adopt. * Source: Sampath Kumar R, Kameswaran M. A sustainable model for cochlear implantation in the developing world: perspectives from the Indian subcontinent. Curr Opin Otolaryngol Head Neck Surg. 2018 Jun;26(3):196–9; and Government of India. Fifthy- fifth report: Standing Committee on Social Justice And Empowerment (2017–2018). WORLD REPORT ON HEARING100 While cochlear implants present remarkable potential in terms of their availability and the opportunities they create, their use is limited for many conditions and individuals (205–207). In addition, the need for rehabilitation therapy and support services that must accompany cochlear implantation can be substantial. Cochlear implantation must therefore be undertaken only after thorough clinical evaluation to ensure the potential benefits, and only where supportive infrastructure for rehabilitation therapy exists. Box 2.10 Cochlear implant: how it works (208) A cochlear implant is a surgically implanted device that works by transducing acoustic energy into an electrical signal, which is used to stimulate auditory nerve fibres. The implant has two components: 1. The external system which includes: • a microphone for sensing sounds; • a speech processor to transform the acoustic information into a sequence of electrical stimuli; and • an external transmitter for transmission of stimulus across the skin to the implanted system. 2. The implanted system which includes: • an internal receiver to process the stimuli received; • a multiwire cable to connect the receiver to electrodes; and • an electrode array that is inserted into the cochlea and directly stimulates neurons in the inner ear. Direct stimulation of the auditory nerve bypasses the damaged or absent cochlear hair cells, making them a suitable form of intervention for individuals with a severe to profound sensorineural hearing loss. Cochlear implant is one of the most successful of all neural prostheses developed to date (208). SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 101 Figure 2.6 Cochlear implant Internal receiver Electrode array Microphone and speech processor External transmitter2 1 3 4 BONE CONDUCTION AND MIDDLE EAR IMPLANTS Bone conduction and middle ear implants represent another growing area of technological advancement in the field of hearing rehabilitation (209–212). • Bone conduction implants transmit sound to the inner ear through the bones of the skull, bypassing the middle ear. • Active middle ear implants may be fully or partially implanted in the ear. They function by converting sound into kinetic energy which directly vibrates the middle ear ossicles or transmits the vibrations to the inner ear. All individuals with conductive, sensorineural or mixed types of hearing loss can potentially use these aids; they do not require the external ear canal to be blocked and thereby reduce many of the problems associated with conventional hearing aids (e.g. wax impaction). The implants are also effective in those with middle-ear diseases and external ear malformations. Whatever the technology used, complementary measures are necessary to ensure that these devices and implants benefit their users. As illustrated in Figure 2.7, this is achieved through a person-centred approach to care which involves the provision of: (186, 187) WORLD REPORT ON HEARING102 • Instruction in the use of hearing devices and accessories which increases the possibility of a positive outcome from their use. • Auditory and cognitive training to help people better use their enhanced hearing in all situations. • Counselling to target issues of participation and quality of life that result from residual deficits of function and activity. © S im on W an g an d Al an a Person-centred care helps those with hearing loss achieve their full potential SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 103 Figure 2.7 Person-centred care for hearing aid users: factors to consider Instruction in the use of hearing devices and accessories. This increases the possibility of a positive outcome from their use Auditory and cognitive training to help people better use their enhanced hearing in all situations Counselling to target issues of participation and quality of life that result from residual deficits of function and activity EFFECTIVENESS OF HEARING AIDS AND IMPLANTS • In children, timely intervention with hearing aids and implants leads to better hearing, spoken communication and quality of life, which further translates into better educational outcomes (202, 203, 213–215). The use of hearing aids can also protect against cognitive decline and dementia (216). • In adults, the use of hearing aids and cochlear implants improves listening abilities and quality of life (186, 187, 190, 191, 193, 202, 214, 217). • The use of these devices is shown to be cost –effective in different economic settings (202, 214, 215, 218–220). VALUE FOR MONEY! WHO made a conservative estimation of return on investment in unilateral hearing aids and cochlear implants in children. In terms of unilateral hearing aids, Whatever the means of hearing amplification, complementary measures are necessary to ensure that these can bring benefit to their users. WORLD REPORT ON HEARING104 estimations based on actual costs in a high-income setting showed a possible return of 1.84 International dollars for every 1 dollar invested, and a lifetime value of DALYs averted of 60 183 dollars for each individual. In the example of a lower-middle- income setting, the return on investment ratio was 1.62 with a lifetime value of DALYs averted of 3564 dollars. With unilateral cochlear implants, estimations based on actual costs in a high-income setting showed a return of 2.59 International dollars for every 1 dollar invested, and a lifetime value of DALYs averted of 38 153 dollars for each individual. In the example of a lower-middle-income setting, the return on investment ratio was 1.46 International dollars with a lifetime value of DALYs averted of 6907 dollars. For an upper-middle-income setting, the return on investment ratio was estimated to be 4.09 International dollars with a lifetime value of DALYs averted of 24 161 dollars. Further details are provided in WEB ANNEX B. Despite the effectiveness and cost –effectiveness of hearing amplification in rehabilitation, many challenges restrict their use and accessibility. These challenges and potential solutions to address their non-availability and non-use are outlined in Section 3. Nonetheless, game-changing developments, especially targeting adult-onset hearing loss provide a sound foundation for further improvements to accessing hearing technology and hearing-related services. CASE STUDY I Hearing aids improve the quality of life of their users Five randomized control trials (RCTs) carried out between 1987 and 2017 in the USA and Europe, concluded that use of hearing aids in older adults led to improved health- and hearing-related outcomes. Those using the devices reported significant improvement in their ability to listen, in particular; and in their quality of life, in general. Along with reporting improved participation in community life, social and family spheres and recreational activities, users indicated that the barriers to employment and education opportunities were reduced when compared with no use of hearing aids (189). CASE STUDY II Cochlear implants are cost–effective in Colombia (221) In Colombia, Penaranda et al. assessed the lifetime investments made in 68 children who received cochlear implants at an early age. Taking into account the cost of the device and any other medical costs, follow-up, speech therapy, batteries, loss of parental income and travel, each child required an average investment of US$ 99 000 over the course of their life (assuming a life span of 78 SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 105 years for women and 72 years for men). The analysis also assessed the return of investment for treating children through cochlear implants based on costs of treatment and benefits of using cochlear implants compared to hearing aids. The study concluded that for every dollar invested in rehabilitation of a child with cochlear implant, there was a return on investment of US$ 2.07. CASE STUDY III Age is no barrier to hearing rehabilitation Hearing loss can occur at any stage during the life course, and can be addressed through timely interventions. Mollie Smith of Rugby in the United Kingdom became profoundly deaf in both ears at the age of 70, attributing the decline in her hearing to exposure to the sound of zeppelins as a child during World War II. With the full loss of her hearing, she learned to read lips, but eventually the additional loss of her vision left her able to communicate through touch alone. It was her vision loss that motivated Mollie to seek an assistive device, learning at the age of 99 years that she was a candidate to receive a cochlear implant. Through use of the cochlear implant, Mollie was once again able to communicate with her loved ones, thus greatly improving her quality of life. Related links: https://katherinebouton.com/2017/02/22/how-old-is-too-old-for-a-cochlear-implant/ https://www.dailymail.co.uk/health/article-2604170/Deaf-great-grandmother-99-oldest-person-Europe-receive-cochlear- implant.html https://www.coventrytelegraph.net/news/health/99-year-old-mollie-becomes-oldest-europe-6983622 GAME-CHANGING DEVELOPMENTS IN HEARING TECHNOLOGY In recent years, the many developments in the field of hearing technology, its provision and related policies, offer the potential to expand access to the required devices in underserved populations. Examples of these include: • Developments in technology i. Self-fitting hearing aids/trainable hearing aids: These aids have the potential to address accessibility and affordability of hearing health care, particularly in low- and middle-income countries (222–225), by reducing the need for audiological support and equipment. A self-fitting hearing aid enables the user to perform both threshold measurements and fine-tuning, with the help of detailed instructions (222). Studies suggest that self-fitting of hearing aids is feasible and is more likely to be successful if the devices and interfaces are clear and well designed, and if the fitting process is clearly outlined (222, 223, 225). However, research that targets diverse population groups and educational settings is required. WORLD REPORT ON HEARING106 ii. New hearing technologies: These include smartphone-connected hearing aids, smartphone hearing aid apps, personal sound amplification products (PSAP) and hearables which provide users with alternative options for amplification (186, 226, 227) (Box 2.11). Although the increasing availability of these could be the first step for people to seek hearing care (228), the effectiveness, benefits and limitations need careful investigation (226, 227, 229, 230). iii. Rechargeable batteries for hearing aids (including solar powered batteries): Hearing aids that use rechargeable batteries are effective in reducing the recurring costs associated with battery use. Rechargeable nickel-metal hydride or lithium- ion batteries paired with a solar charging device provide an alternative that can be useful in all settings, including environments where electrical supply is uncertain (231–233). Rechargeable batteries and a recharger pose additional initial costs and must be affordable for this strategy to succeed. It is also important to test hearing aids with these rechargeable cells to make sure their electroacoustic characteristics and quality remain unaltered (233). • Developments in service delivery i. Direct-to-consumer devices: Many of the above-mentioned technologies are becoming available direct- to-consumer (DTC) including over-the-counter (OTC) hearing aids. Studies suggest that efficacious OTC models may increase accessibility and affordability of hearing aids for millions of older adults (234). However, it is important that these products are accompanied by policy and regulatory efforts to ensure their safety and effectiveness (235) and that users have access to, and can fully benefit from, the required support and services delivered at community level13 (236) (see Box 2.11). ii. Use of eHealth and mHealth15 platforms for instructions and training: Given that amplification forms only one part of person-centred care for hearing, the lack of audiologist input must be compensated for by providing high-quality instructions (227, 237). The use of eHealth and mHealth provides many opportunities that can enhance access, improve affordability, use, and convenience of hearing amplification (238). Freely-available, evidence-based online multimedia materials can improve knowledge and impart the skills required for hearing aid handling. These would be particularly suitable if the materials were adapted to meet the specific needs of an individual (186). iii. Training of locally available manpower in the fitting and maintenance of hearing aids: (151, 239, 240) 15 eHealth refers to the use of information and communication technologies (ICT) for health, (https://www.who.int/ehealth/en/). mHealth is a component of eHealth which includes medical and public health practice supported by mobile devices, such as mobile phones, patient monitoring devices, personal digital assistants (PDAs), and other wireless devices (https://www.who.int/goe/publications/goe_ mhealth_web.pdf). SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 107 Training can improve access to hearing care, especially in environments where audiological manpower is in short supply. Section 3 provides further details on adopting a task-sharing approach to bridge human resource gaps for hearing care provision including hearing aids. Box 2.11 Food and Drug Administration regulations The Food and Drug Administration (FDA) of the United States of America states that: 1. A personal sound amplification product (PSAP) is a wearable consumer electronic product intended for consumers without hearing loss to amplify sounds in certain environments such as recreational activities. 2. A hearing aid is a wearable instrument or device designed for, offered for the purposes of, or represented as, aiding persons with, or compensating for, impaired hearing. An over-the-counter (OTC) hearing aid is considered a direct-to-consumer product and thus does not require consultation with, or dispensing from, a hearing health- care professional. Nonetheless, the FDA requires that a person buying a hearing aid be examined to rule out certain red-flag medical conditions related to the ears, or that a medical waiver declining a medical evaluation be signed by the patient. 2.4.3 SIGN LANGUAGE AND OTHER MEANS OF SENSORY SUBSTITUTION FOR HEARING LOSS The main concern relating to hearing rehabilitation for infants and children with hearing loss is ensuring the timely development of language. Language acquisition in children ensures optimal cognitive and socioemotional development (241, 242) and can be undertaken through non-auditory means. SIGN LANGUAGE Access to communication through sign language learning provides a much needed stimulus for facilitating the timely development of deaf infants. Early access to sign language is beneficial for many deaf infants and children (241–244) including those: i. who do not have access to hearing care services and hearing technology. When access to these is limited, the use of sign © S oc ie ty fo r S ou nd H ea rin g In te rn at io na l Deaf schoolchildren in India can learn and communicate with the use of sign language WORLD REPORT ON HEARING108 language can ensure cognitive development and facilitate communication. It also enables children to gain education through sign language and have proper socioemotional development. ii. who live in environments with access to hearing technology and speech learning. While taking steps to ensure that a child develops spoken language skills, learning sign language ensures that infants do not face any delay in language acquisition. Given the far-reaching consequences of linguistic deprivation in early childhood, it is essential to address this at the earliest stage possible. Sign language provides that possibility. Moreover, learning sign language does not hinder or delay the subsequent or simultaneous acquisition of spoken language skills. iii. whose families prefer to use non-auditory communication through sign language instead of, or in addition to, auditory-verbal rehabilitation. SPEECH READING Speech reading, where a person understands spoken language solely by viewing the person talking, forms an important means of accessing communication for those with hearing loss. The underlying neurological processes are similar to those for auditory word recognition (246). Lipreading is one of the most common means of speech reading and includes looking at teeth, tongue, facial expressions, body language and other visual cues to understand what a person is saying. This is an integral part of speech perception (247) and, since it requires training, needs to be considered in hearing and speech rehabilitation strategies (248). Such training should further be supported by auditory training and use of cued speech (248). ALTERNATIVE METHODS OF COMMUNICATION Alternative methods of communicating are especially useful for people with dual sensory loss such as deaf-blindness, where access to communication is further challenged. Such methods include: “Signed languages are natural human languages existing across numerous societies around the world. As with spoken languages, signed languages display phonetic, phonemic, syllabic, morphological, syntactic, discourse, and pragmatic levels of organization as expected of natural languages.” (241, 245) SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 109 • Signing: includes signed communication, signed supported languages, manually coded languages (e.g. Signed Supported English), Total Communication, Simultaneous Communication and Cued Speech. All are terms that cover communication where a spoken language is used with some visual support or cues. • Finger spelling: involves spelling out words by finger shapes on the hand and can be used to support oral approaches. • Braille: is a form of written language in which characters are represented by patterns of raised dots that are felt with the fingertips. • Tadoma: involves the deaf-blind individual placing their thumb on the speaker’s lips and their fingers along the jawline to feel the movements of the speaker as they talk (249). CASE STUDY Sign language learning transforms lives in Uganda In 2009, Orianda Martin heard about Deaf Link Uganda (DLU) through its Mobilisation Project – a project created to assess the educational needs of deaf children whose families require financial assistance for them to access education. Orianda was living in Kumi District, Eastern Uganda where fear and miseducation about his deafness and inability to communicate had led to him being abused by members of the community. DLU was able to identify a school for the deaf in Orianda’s region and provided the necessary financial assistance for him to enrol. A subsequent assessment concluded that a vocational school for the blind and deaf would be more suitable for Orianda, as he had begun learning to farm before leaving home. He was enrolled at SIKRI Vocational Training Centre for the Blind and Deaf in Kenya and quickly began to thrive in his new setting. He learned to communicate using sign language and touch communication and eventually graduated with a degree in farming and weaving. Upon returning to Uganda, his community welcomed him and celebrated his success with heartfelt recognition that, in the past, they had misunderstood his deafness. A leader from DLU delivered a powerful message to all those who had come to celebrate Orianda’s accomplishments: “Deaf people can do all the things you can do, and must be included.” Related weblinks: https://www.deaflinkuganda.org/project/educational-support/ ; https://www.youtube.com/watch?v=ksNLa3KJiAo WORLD REPORT ON HEARING110 2.4.4 REHABILITATIVE THERAPY Whether a person is born deaf or develops hearing loss during the early years, or in adulthood, rehabilitative therapy is essential. The aim of such therapy is to enhance perceptive skills and communication-linguistic abilities (250). PERCEPTIVE SKILLS Perceptive skills allow the user to make best use of their residual hearing, if any; or to optimize the benefits of hearing technology. Making best use of residual hearing can be achieved through appropriate auditory training and other professional measures; these are key to improving auditory communication skills among people with hearing loss, at all ages (186, 187, 251). At the same time, as described earlier, counselling and instructions are important to improving the use of technology. COMMUNICATION–LINGUISTIC ABILITIES Communication–linguistic skills aim to improve language capability to enable communication and facilitate education. This may be through a traditional oral approach, auditory verbal therapy, total communication, speech-reading, sign language or bilingual programmes (252, 253). While much has been written on the effectiveness of rehabilitative therapy, especially in deaf children and their linguistic and educational outcomes, overarching contributory factors to individual outcomes include age at intervention; family-centred care; multidisciplinary team support; and care across the life course (see Box 2.12). Decisions regarding rehabilitation must be taken with parental participation and family involvement. These are key determinants of rehabilitation outcomes, since the success of interventions depends not only on service provision, but is influenced significantly by how parents receive the interventions, parent satisfaction, and how the interventions “fit” the family (107, 254, 255). © P ai ge S tr in ge r A hearing-impaired child undergoes speech therapy in Viet Nam SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 111 Box 2.12 Key factors for optimal rehabilitation outcomes in deaf infants • Family-centred care: (104, 121, 254–259) the participation of parents and families in the care of a deaf child is a strong predictor of outcomes. Families must be involved at the outset and be a part of all decision-making and care provision. Professionals who provide care must be trained in family-centred communication; rehabilitation programmes should be “fit to the family”. • Early intervention: infants that are enrolled in intervention programmes within the first few months of life can maintain language and socioemotional development corresponding to their chronological age (102–105, 107, 108, 121, 260, 261). For this to occur, infants must have their hearing impairment identified soon after birth, which is possible through newborn hearing screening programmes. • Multidisciplinary support team: (250, 259, 262) the support of a multidisciplinary team in the care of a deaf child is ideal, and would include physicians (neonatologists, otolaryngologists, audiologists, family paediatricians, neuropsychiatrists), technicians, therapists, and social workers among others as required. The composition and skills of a multidisciplinary team depend on the needs of the child and family. • Strong tracking and follow-up mechanism: (262–264) a strong follow- through mechanism and tracking system is required following a newborn screening programme to ensure its effectiveness. • Life-course approach: (265, 266) while it is important for deaf infants to receive care and counselling through childhood, care must also be taken to provide appropriate support and guidance through adolescence and adulthood. EFFECTIVENESS OF REHABILITATIVE THERAPY FOR HEARING LOSS • Early intervention and therapy is effective in improving language development, psychosocial skills, quality of life and real-life functioning in children and adults (187, 261, 268–273). • Rehabilitative therapy is essential to ensure that people benefit from the use of their hearing aids and implants (187, 274, 275). Such rehabilitation improves the acceptability, effectiveness and cost–effectiveness of these devices. • Hearing rehabilitation with or without the use of hearing aids is beneficial for communication and quality of life in persons with cognitive impairments (193). WORLD REPORT ON HEARING112 CASE STUDY Family-centred early intervention benefits children with hearing loss and their parents A successful newborn hearing screening programme in upper Austria allows interventions to commence almost immediately after diagnosis of a hearing loss. Children diagnosed with hearing loss are commonly referred to the Family-centred Early Intervention Program (FLIP) Linz,* which provides home-based services for deaf and hard-of-hearing children. FLIP works through a multidisciplinary team including speech and language therapists, educationalists, social workers, parent-to-parent support providers (parent-peer) and deaf role models. Interventions are provided in the child’s home by speech therapists who also educate and guide parents to make informed decisions regarding different communication modes and strategies. Families that decide to take the sign language route are supported through a deaf role model for integration of sign language into the daily life of the family. Those who opt for the use of hearing technology are also supported in its use. Families also have access to a social worker who can aid with completion of the required applications and provide information regarding financial support. In addition, parent- peers help the child’s parents find ways to process the understanding that their child has a hearing loss, as well as providing information on social and educational systems. Through this family-centred approach, the programme delivers an individually tailored education plan for each child in close cooperation with the parents. Over years, hundreds of families have benefitted through this approach. One of the parents enrolled in this programme has stated: “We get great support from our speech therapist who coaches us in a way we had never expected. Another special point is the opportunity to talk to other parents who are facing the same challenges, who have walked a few more steps than we have.” *See: https://www.barmherzige-brueder.at/unit/issn/hoerbeeintraechtigung/babyskleinkinder “Though the health and economic issues in developing countries may create situations in which the development of early hearing detection and intervention (EHDI) programs could seem insurmountable, developing countries have some resources that are not easily available to those in the developed world. Developing countries often have well- organized communities in which members work together for the benefit of the individuals within their communities as well as a willingness to learn strategies that can improve the lives of individuals in their communities.” (267) SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 113 CASE STUDY Veterans of the USA benefit from hearing care Some 28 million Americans live with hearing loss, including more than half of adults over 75 years of age. Among American veterans, hearing problems are the most prevalent service-connected disability, and more than 933 000 veterans receive compensation for hearing loss. Moreover, only 1 in 5 of those in need of a hearing aid actually use one. To address this issue, Veterans Health Administration has initiated a Veterans Affairs (VA) Audiology Program to provide quality comprehensive hearing health care to all veterans in need. This programme allows veterans to receive comprehensive assessments and rehabilitation services including advanced hearing technology. More than 1100 audiologists employed by VA offer care across 400 sites of care, along with 400 speech-language pathologists at 190 sites. According to an audiologist working for VA, these services have positively impacted the ability of veterans to function in their daily life and improved their quality of life by allowing them to remain active and socially engaged (276, 277). 2.4.5 HEARING ASSISTIVE TECHNOLOGY In addition to rehabilitation, hearing assistive technology is useful in improving access to communication. By improving sound quality and speech discrimination, it supports a person’s interaction with the environment. Hearing assistive technology includes both software and hardware that can be used in a variety of environments, including home, work, school, social gatherings, meetings, hospitals, places of worship, and theatres. The different types of hearing assistive technologies available include devices for enhanced listening that improve the signal to noise ratio for improved listening in a noisy surrounding; alerting devices; and telecommunication devices. DEVICES FOR ENHANCED LISTENING These devices enhance the use of hearing aids and cochlear implants, and can also assist those not using these tools. The speaker talks into a microphone and the sound is delivered directly into a receiver worn by the listener or integrated within his or her hearing aid or implant. By doing so, the system cuts off interference and masks the effects of environmental background noise, making speech easier to understand. Its use improves a person’s ability to listen and therefore is useful in classroom settings. The system also makes it easier for people with hearing loss to carry out conversations in public spaces, health-care centres and in their home. WORLD REPORT ON HEARING114 The common technologies used in enhanced listening devices include: • Frequency modulation (FM) systems (217) – which convert sound into FM signals (see Figure 2.8). • Infrared system (278–280) – which uses infrared rays to transmit sound. • Hearing induction loop (281) – which transmits an audio signal directly into a hearing aid via a magnetic field. • Hardwired system (282) – where sound is carried from the microphone to the receiver through a wired connection. Figure 2.8 A frequency modulation system SPEAKER Body-worn microphone Body-worn emitter FM transmission Acoustic propagation LISTENER Hearing aid microphone Hearing aid receiver A frequency modulation (FM) system typically has two or more components: the microphone, with or without a transmitter; and a receiver attached to the hearing aid or microphone. FM serves well in eliminating the effects of background noise and maintaining a constant speech input, irrespective of distance between speaker and listener. ALERTING DEVICES Alerting devices use sound, light, vibrations, or a combination of these, to catch the attention of a person who is hard of hearing or deaf. Examples of alerting devices include shaking alarms, pillow vibrators, bed vibrator, vibrating pagers, wrist vibrator, vibrating and shaking alarm clocks, motion signaller, motion signaller, fire and smoke signaller, and doorbell signaller (283). SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 115 TELECOMMUNICATION DEVICES Telecommunication devices transmit spoken messages in a written format. Examples include: (i) a teleprinter that works as a two-way typing telephone where someone types the message and responds to the teleconversation; and (ii) a captioned telephone where spoken words are converted into text. CASE STUDY Technology promotes inclusion Recent technological aids have been developed to assist persons with hearing loss: 1. Quiet Taxi:* was launched by a leading car manufacturing company revealing technology that assists taxi drivers who have impaired hearing to have sustainable employment and ensures safety. Operated in Seoul, these taxis are equipped with vibration, text-to-speech, light signallers and alerts for safe driving. 2. Loopfinder: is a mobile app developed by the Hearing Loss Association of America, along with OTOjoy which helps people find hearing loop systems available in America. A person can locate where loop systems are available and also mark any place as having or needing a loop system. 3. StorySign: is a mobile application which facilitates reading in deaf children by translating text from selected books into sign language. *Source: https://tech.hyundaimotorgroup.com/video/the-quiet-taxi/ 2.4.6 HEARING ASSISTIVE SERVICES Hearing assistive services include measures such as captioning and sign language interpretation. CAPTIONING Captioning is the process of converting the audio content of a television broadcast, webcast, film, video, CD-ROM, DVD, live event, or other productions into text, and displaying the text on a screen, monitor, or other visual display system (284). It is an important means of providing access to content for people with hearing loss who rely mainly on oral communication. Captions not only display words as the textual equivalent of spoken dialogue or narration, they also include speaker identification, WORLD REPORT ON HEARING116 sound effects, and music description. Further information on captioning is provided in Box 2.13. Captioning typically is offered for: • Live events that are held face to face, e.g. meetings, conferences, theatre performances or events streamed online such as webcasts, live social media events, television programmes. • Pre-recorded content such as movies, television, video and audio material. Box 2.13 Captioning services provide access to all In different countries, captioning services can be referred to variously as: speech- to-text-reporting (STTR); speech-to-text-interpreting (STTI); Communication Access Real-time Translation (CART); or speech-to-text services. Users tend to be those who have difficulty hearing either with or without a hearing aid or implant. For example, a person using a hearing aid may function well in a one-to-one context, but may have difficulty in a meeting room among several people. Services for captioning can be available either onsite where an event or recording is taking place, or offered remotely. In cases of remote captioning, the captioner is able to hear the person/s in another location via electronic means and captions are quickly and effectively transmitted to the viewers/listeners. Provision of such captioning services is an important component in implementation of Articles 5 and 9 of the United Nations Convention on Rights of Persons with Disabilities (285), ratified by 163 Member States. Captioning empowers its users, and ensures their inclusion in ongoing social, recreational and official activities. Users frequently report that captioning is essential to them and empowers them. A survey carried out in 2013 by Collaborative for Communication Access via Captioning (CCAC) of 220 respondents, found that over 70% felt included, less stressed by their hearing loss, and more able to participate when they had captioning. Comments made by users include: (286) “I BELONG. I am no longer an outcast because I cannot hear what is going on.” “STT [Speech-to-text] allows me to hear the conversation. Without it, I am lost.” CASE STUDY Captioning promotes equal participation among hard-of- hearing people* “Captioning is an invaluable means of access for many hard-of-hearing persons, myself included. I rely on captions every day to get news and information on television and to enjoy media programmes and movies. By reading the captions, SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 117 I am able to supplement my hearing so that I can understand the intended meaning in these mediums. I also find captioning invaluable for large-scale meetings and group discussions. Although I wear hearing aids, they cannot pick up sounds at considerable distances; thus captioning reduces the hearing barrier. The use of assistive devices such as FM/Infrared systems and loops may also help in these settings. In small group discussions, which frequently seem to take place in noisy environments or rooms with poor acoustics, captions and assistive devices make it possible for me to understand the conversation and to participate as a group member. The fact that the meetings of the World Hearing Forum at the World Health Organization are fully accessible with the provision of captions and the use of amplified sound through microphones has made it possible for me to contribute effectively to its work. Without captioning and assistive devices I would be a “visitor” to these discussions, not a true participant and, therefore, not fully engaged. The removal of barriers to participation enables me to contribute to my full capacity as an equal member of society. As it does for me and others in my situation, it provides access and contributes to my self-development and self-esteem. I dream that this form of access is available for all persons with a hearing loss who require it at school, in the workplace, in churches, theatres, movie houses, transportation facilities, and venues for community and political participation, in short, in all areas of human endeavour.” *Source: contributed by Ms Ruth Warick, President, International Federation of Hard of Hearing People SIGN LANGUAGE INTERPRETATION Sign language interpretation is the use of a sign language to convey the information contained in the programme audio (speech and other important sounds) to viewers who are deaf, and for whom sign language is their preferred language; it requires an interpreter who can translate the audible content into a sign language that is understood by the participants. Sign languages differ from country to country. Use of sign language interpretation services in health-care settings facilitates access to health services among sign language users (287), and can also improve classroom learning among deaf students (288). The provision of such services in countries is required by Article 9 of the United Nations Convention on the Rights of Persons with Disability (289). An example of the value of sign language interpretation to education and health is provided in Box 2.14. WORLD REPORT ON HEARING118 Box 2.14 Sign language interpretation improves access to education and health services* A survey conducted in 2009 by the World Federation of the Deaf revealed that 68% of the 93 responding countries did not have access to professional sign language interpreters (290), as is mandated by the United Nations Convention on Rights of Persons with Disabilities (UNCRPD). Ensuring the availability and quality of these services requires a system for training, certifying, and paying interpreters, none of which are in place on a global scale. In Europe, there are an estimated 8491 professional sign language interpreters – i.e. 1 interpreter for every 162 users of sign language, although a wide variation is evident among countries, with ratios ranging from 1:8 in Finland to 1:6500 in Albania (246). Professional interpreters have undergone training at various levels, ranging from vocational training to gaining a Masters degree. A survey conducted among sign language users in Europe showed substantial unmet demand in covering all interpreting needs – i.e. ranging from medical to educational to community and public sector (291). Professional sign language interpreters are even more scarce in developing countries, where many interpreters may have received no training whatsoever. In order to promote access to qualified and professional sign language interpreters, in 2017, the Ghana National Association of the Deaf, in partnership with the Danish Deaf Association, embarked on a diploma programme in sign language interpreting, in cooperation with the University of Cape Coast.‡ As of August 2019, a total of 60 sign language interpreters were certified through this programme, of which 34 have been employed at various governmental agencies and institutions. Other interpreters employed at major hospitals in Ghana have ensured equal access to health services for deaf people in those hospitals. *contributed by Kasper Bergmann of the World Federation of the Deaf. ‡See: https://gnadgh.org. Well-established, effective and evidence-based interventions, along with more recent developments, provide a range of options to address hearing loss across the life course. Sections 3 and 4 outline solutions to the challenges faced in using a public health approach, and in making these options accessible to all those in need. 2.4.7 ENVIRONMENTAL ADAPTATIONS While there are many solutions designed for the individual with hearing loss, improving the acoustic environment can reduce hearing-related disability and increase accessibility to sound and communication. This is important across the life course in different settings: in learning situations, such as classrooms; in social and cultural environments where communication is highly valued (including restaurants, SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 119 church and activity halls, adult care homes), and in environments of daily living, such as supermarkets. Good acoustics are critical to learning for young children who have less well-developed phonological knowledge of the world than adults, and are thus less able to reconstruct degraded speech information (292). Unsuitable acoustics present an even greater challenge for children with hearing loss or learning problems (292). Open plan learning is becoming increasingly popular in some settings to enhance flexible teaching and learning practices; however, acoustic modifications to support this have often been overlooked, leading to poor perception of auditory information (293). For older adults with hearing loss, listening in challenging environments increases cognitive effort which is associated with fatigue and social withdrawal (294, 295). Many restaurant and café dining areas are noisy, in part due to a lack of soft furnishings which increases acoustic reverberation (296). Universal building design16 maximizes accessibility (297) and benefits older adults; the principles of universal design are recommended in WHO’s Age Friendly Cities initiative (298). 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Year 2007 position statement: principles and guidelines for early hearing detection and intervention programs. Pediatrics. 2007;120(4):898–921. 264. Joint Committee on Infant Hearing. Year 2007 position statement: principles and guidelines for early hearing detection and intervention programs. Pediatrics. 2007;120(4):898–921. 265. Appelman KI, Callahan JO, Mayer MH, Luetke BS, Stryker DS. Education, employment, and independent living of young adults who are deaf and hard of hearing. Am Ann Deaf. 2012;157(3):264–73. 266. Glade R, Bowers L, Baldwin C. Incorporating informational counselling in treatment for individuals with hearing loss and their families. ASHA Special Interest Group 9. 2012;3(1):13–26. 267. Yoshinaga-Itano C, Thomson V. The work of the village: creating a new world for children with hearing loss and their families. Int J Audiol. 2008;47(sup1):S14–S22. 268. Shekari E, Nakhshab M, Valinejad V, Zadeh A, Hosseinpour A. A systematic review of the effectiveness of early intervention and the role of parents in language development of hearing loss children. Iranian Rehab J. 2017;15(1):5–14. 269. Ching TY, Dillon H, Marnane V, Hou S, Day J, Seeto M, et al. Outcomes of early- and late- identified children at 3 years of age: findings from a prospective population-based study. Ear Hear. 2013;34(5):535–52. 270. Ching TYC, Dillon H, Leigh G, Cupples L. Learning from the longitudinal outcomes of children with hearing impairment (LOCHI) study: summary of 5-year findings and implications. Int J Audiol. 2018;57(sup2):S105–S111. 271. Hawkins DB. Effectiveness of counseling-based adult group aural rehabilitation programs: a systematic review of the evidence. J Am Acad Audiol. 2005;16(7):485–93. 272. Collins MP, Souza PE, Liu CF, Heagerty PJ, Amtmann D, Yueh B. Hearing aid effectiveness after aural rehabilitation – individual versus group (HEARING) trial: RCT design and baseline characteristics. 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Postgrad Med J. 2000;76(899):537–41. 279. Anderson KL, Goldstein H. Speech perception benefits of FM and infrared devices to children with hearing aids in a typical classroom. Lang Speech Hear Serv Sch. 2004;35(2):169–84. 280. Kim JS, Kim CH. A review of assistive listening device and digital wireless technology for hearing instruments. Korean J Audiol. 2014;18(3):105. 281. Alfakir R, Holmes AE, Kricos PB, Gaeta L, Martin S. Evaluation of speech perception via the use of hearing loops and telecoils. Gerontol and Geriatr Med. 2015;1:2333721415591935. 282. Ebert DA, Heckerling PS. Communication with deaf patients: knowledge, beliefs, and practices of physicians. JAMA. 1995;273(3):227–9. 283. Harkins J, Tucker PE, Williams N, Sauro J. Vibration signaling in mobile devices for emergency alerting: a study with deaf evaluators. J Deaf Stud Deaf Educ. 2010;15(4):438–45. 284. What is Captioning? 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Marschark M, Leigh G, Sapere P, Burnham D, Convertino C, Stinson M, et al. Benefits of sign language interpreting and text alternatives for deaf students’ classroom learning. J Deaf Stud Deaf Edu. 2006;11(4):421–37. 289. United Nations Department of Economic and Social Affairs. Convention on the rights of persons with disabilities (CRPD). Article 9 – Accessibility. Available at: https://www.un.org/ development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/ article-9-accessibility.html , accessed November 2020. 290. Haualand, H. Allen, C. Deaf people and human rights. World Federation of the Deaf and Swedish National Association of the Deaf. 2009. Available at: https://www.rasit.org/files/ Deaf-People-and-Human-Rights-Report.pdf , accessed November 2020. SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 135 291. De Wit M. A comprehensive guide to sign language interpreting in Europe. 2016. 292. Crandell CC, Smaldino JJ. Classroom acoustics for children with normal hearing and with hearing impairment. Lang Speech Hear Serv Sch. 2000;31(4):362–70. 293. Mealings K, Buchholz, JM., Demuth, K., & Dillon, H. Investigating the acoustics of a sample of open plan and enclosed Kindergarten classrooms in Australia. Applied Acoustics. 2015;100:95–105. 294. McCoy SL, Tun PA, Cox LC, Colangelo M, Stewart RA, Wingfield A. Hearing loss and perceptual effort: downstream effects on older adults’ memory for speech. Q J Exp Psychol A. 2005;58(1):22–33. 295. Holman JA, Drummond A, Hughes SE, Naylor G. Hearing impairment and daily-life fatigue: a qualitative study. Int J Audiol. 2019;58(7):408–16. 296. Maclaughlin K. Pass the salt ... and a megaphone. The Wall Street Journal. Feb 3rd 2010. Available at: https://www.wsj.com/articles/SB1000142405274870402280457504106081 3407740 , accessed November 2020. 297. Rindel J. The acoustics of places for social gatherings. In Proceedings of EuroNoise 2015. 2015. Available at: https://odeon.dk/pdf/C127-Keynote%20EuroNoise%202015%20 Rindel.pdf , accessed November 2020. 298. World Health Organization. Global age-friendly cities: a guide. Geneva: World Health Organization; 2007. Available at: https://www.who.int/ageing/publications/age_friendly_ cities_guide/en/ , accessed November 2020. 299. Schomer P, Mestre V, Schulte-Fortkamp B, Boyle J. Respondents’ answers to community attitudinal surveys represent impressions of soundscapes and not merely reactions to the physical noise. J Acoust Soc Am. 2013;134(1):767–72. 300. Davies W, Adams, MD., Bruce, NS., Cain, R., Carlyle, A., Cusack, P, et al. Perception of soundscapes: an interdisciplinary approach. Applied Acoustics. 2013;74(2):224–31. WORLD REPORT ON HEARING136 Facing the workforce challenge in Zambia © R ac ha el H ap un da , Z am bi a SECTION 2 SOLUTIONS ACROSS THE LIFE COURSE: HEARING LOSS CAN BE ADDRESSED 137 Ear and hearing care is a fairly new concept in Zambia. Following the World Health Assembly resolution of 2017 on hearing loss, the Government of Zambia adopted a plan to develop quality EHC services as close to people as possible. The major challenge in this effort came from the fact that there are only five ENT specialists and one audiologist for the 17 million people of Zambia, of whom 4–6% have hearing loss and many more suffer with ear diseases. Using the national ENT Strategic Plan 2017–2021 as a guide and with support from the German and Scottish governments, we rolled out a pilot project to train nurses and clinical officers working in the country’s national health service, on primary ear and hearing care. Through a systematic rollout of a cascade training plan which is based on the WHO primary ear and hearing care training manuals, 28 nurses, 43 clinical officers and 133 community health workers from 92 facilities have been trained over the last 18 months. With their support, 50 primary ear and hearing care services have been established at peri-urban and rural health centres across the country. The trained health workers themselves have also benefitted from the additional skills they have developed, which help them in addressing ear and hearing problems, which are so common in the community. Over 15 000 Zambians, including those living in rural and underserved areas, have already benefitted from the services provided by the trained staff. As the programme continues to grow and expand, through the political commitment of the government and the dedication of its health cadres, the country is on track to realize the vision of ‘making ear and hearing care accessible for all’. Racheal Hapunda, EHC programme coordinator, Ministry of Health, Zambia WORLD REPORT ON HEARING138 SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 139 SECTION 3 CHALLENGES FACING EAR AND HEARING CARE Health is an investment in the future: the cost of doing nothing is one we cannot afford. Dr Tedros Adhanom Ghebreyesus, WHO Director-General, 2020 3.1 OVERVIEW O Key challenges facing the field of ear and hearing care (EHC) are grouped into three categories: 1) Demographic and population trends. 2) EHC literacy, and stigma associated with hearing loss. 3) Health system related issues. O Demographic and population trends reflect the high, and rising, global prevalence of hearing loss across the life course. By 2050, it is estimated that some 2.5 billion (1 in every 4) people will experience hearing loss, with nearly 700 million (1 in every 14) living with moderate or higher levels of hearing loss in the better hearing ear. O Urgent public health action is needed to mitigate this projected growth. While people with hearing loss of all ages and across all population groups need care, special attention is needed for vulnerable populations to ensure they have access to ear and hearing care and other health services. O The lack of accurate information, and stigmatizing mindsets surrounding ear diseases and hearing loss often limit access to care. Even among health- care providers, knowledge relevant to prevention, early identification and management may be lacking, thereby restricting the care they provide to those with ear and hearing needs. WORLD REPORT ON HEARING140 O Challenges encountered in the delivery of hearing care services relate to the different building blocks of health systems: clinical services; human resources; access to devices; data and indicators; and governance and finance. O Throughout the life course, clinical EHC services must be accessible, integrated within national health services, and delivered across all levels of care. Despite the high level of need for these services, they are commonly unavailable at the primary level of care and inconsistent at secondary and tertiary levels. O Section 3 provides information and analysis of the overall availability of human resources for hearing care, by WHO region and income group, and shows the significant inequities across both. The impact of shortages on existing professionals is explored, the implications of real-life scenarios described, and solutions, such as task-sharing, in combination with other strategies to address the gaps and increase the EHC workforce, are proposed. O Issues relating to worldwide accessibility of hearing aids and cochlear implants are highlighted, with estimates showing that only 17% of those who would benefit from using a hearing aid, actually use one. This gap ranges from 77% in the WHO European Region to a daunting 90% in the WHO African Region. Assessment reveals that the appropriate use of a hearing aid by every person who would benefit with this device, could reduce the years lived with disability (YLDs) associated with unaddressed hearing loss by 59%. O Government leadership for EHC integration is often lacking, as evidenced by the lack of countries with strategic plans for integration and available financial resources to address ear diseases and hearing loss. O Although seemingly insurmountable, challenges have been overcome in many parts of the world by countries adopting public health strategies. Section 3 proposes solutions for addressing these challenges and provides examples of implementation. Despite the available range of effective interventions to prevent and address hearing loss, most of those who need hearing care still do not have access to it (1). In order to chart a future course in the field of ear and hearing care, the situation must be addressed and the challenges faced. The key challenges form three distinct categories: (i) demographic and population trends; (ii) EHC literacy and stigma; and (iii) health system challenges. Through acknowledging and understanding these, we can be better placed to address them. Section 3 outlines these challenges and highlights the opportunities to tackle them. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 141 By 2050, 1 in 4 people are projected to have a problem with their hearing. 3.2 DEMOGRAPHIC AND POPULATION TRENDS Hearing loss is a widely prevalent health condition of diverse aetiology, affecting individuals across the life course. Prevalence of hearing loss is constantly increasing, driven by global demographic trends, and persistent and growing risk factors. The current and projected global prevalence is outlined below. 3.2.1 PROJECTED TRENDS IN HEARING LOSS The main demographic shifts predicted for the coming decades are population growth and population ageing, both of which will greatly affect the epidemiology of hearing loss (2, 3). As the world’s population continues to grow – research estimates a global population increase from the current 7.7 billion, to almost 10 billion by 2050 (2) – it is anticipated that by 2050, nearly 2.5 billion people will have hearing loss of mild or higher severity in the better hearing ear.17 Of these 2.5 billion, nearly 700 million are most likely to encounter loss of moderate or higher severity in the better hearing ear (Figure 3.1). Thus worldwide, by 2050, nearly 1 in every 4 people can expect to have some degree of hearing loss, and 1 in 14 (at least 7%) will require hearing care. All WHO regions can expect to experience this exponential rise, proportionate to their population profile. Whereas the maximum rise is likely to be seen in the Eastern Mediterranean and African regions where the number of people with hearing loss is predicted to more than double by 2050, the highest number of people in 2050 is likely to be found in the Western Pacific (approximately 760 million) and South-East Asia (approximately 660 million) regions (Figure 3.2). The rising numbers depicted in Figure 3.3 are driven mainly by demographic population shifts, such as the global increase in ageing populations. However, hearing loss cannot be considered an inevitable consequence of living longer: several factors influence a person’s hearing trajectory across the course of life (as outlined in Section 1). Prevention, through urgent public health action, can mitigate some of this projected growth. In addressing the needs of the growing numbers predicted to experience hearing loss in the coming years, countries should make preparations to ensure a well-functioning and productive society. 17 McDaid D, Park AL, Chadha S. Estimating the global costs of hearing loss. Int J Audiol. 2021;16:1-9. WORLD REPORT ON HEARING142 Figure 3.1 Projected increase in prevalence of moderate and higher grade of hearing loss, 2019–2050Figure 3.1 Projected increase in prevalence of moderate and higher grade of hearing loss, 2019–2050 2019 2030 2040 2050 0 500 1000 1500 2000 2500 Number of people in millions 711 430 509 612 1582 1889 2206 2497 Disabling hearing lossAll hearing loss Figure 3.2 Projected increase in prevalence of all grades of hearing loss in WHO regions Figure 3.2 Projected increase in prevalence of all grades of hearing loss in WHO regions Number of people in millions 2019 2030 2040 2050 African Region Eastern Mediterranean Region European Region Region of the Americas South-East Asia Region Western Pacific Region 0 100 200 300 400 500 600 700 800 78 115 152 194 197213 228 236 217 255 292322 401 479 573 666 546 656 731 766 137 185 251 338 SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 143 Figure 3.3. Projected increase in prevalence of moderate or higher grade of hearing loss in WHO regions African Region Eastern Mediterranean Region European Region Region of the Americas South-East Asia Region Western Pacific Region 0 50 100 150 200 250 2019 2030 2040 2050Number of people in millions 22 30 40 52 57 60 66 71 63 65 77 86 110 129 156 185 137 174 207 229 40 54 72 97 Figure 3.3. Projected increase in prevalence of moderate or higher grade of hearing loss in WHO regions CHALLENGES CAN BE OVERCOME • Preventive efforts need be strengthened, especially in the face of the projected growth. Such actions can succeed in controlling the projected growth trends and mitigate the associated costs (3, 4). Large cohort studies conducted in high-income countries, such as the United States, Sweden and Norway, show a clear decline in age-specific prevalence of hearing loss during the past decades. Reduced exposure to occupational noise and decline in ear infections are considered responsible for this encouraging trend (5–7). Nonetheless, the overall numbers continue to rise, mainly due to demographic changes. CASE STUDY Prevention works! In 2002, rigorous implementation of a hearing conservation programme was undertaken in the Swedish Armed Forces, and its impact assessed after a few years. The results showed that the incidence of hearing loss in the affected population dropped to one third during a five-year period, having reduced to 2.3% from the earlier 7.9% – i.e. the same as the incidence rate in the non- exposed population. This was also reflected in a decreased rate of hearing loss cases in the occupational insurance system leading to benefits for the employer and employees (8). WORLD REPORT ON HEARING144 3.2.2 HEARING LOSS IN VULNERABLE POPULATIONS Difficulty in accessing care, not only for hearing loss but for other issues of general health, is most marked in certain vulnerable populations. Typically, vulnerable populations include racial and ethnic minorities, children, older adults, socioeconomically disadvantaged people, people with health conditions, LGQTBI18 persons, immigrants, those in war-torn and conflict areas, prisoners, and even families of persons with life-threatening health conditions (9). People with hearing loss are more likely to face challenges when seeking services, mainly due to communication difficulties (10–13). Health promotion messages may be inaccessible to people with hearing loss unless attention is given to this (12). While these challenges existed before the advent of the COVID-19 pandemic, they have been further aggravated by the implementation of key preventive strategies, such as the use of face masks and need for social distancing. People with hearing loss commonly strain to hear, even when using hearing aids; the wearing of face masks increases their difficulties by distorting sound and concealing important visual cues (14). Moreover, in hospitals, patients could be at greater risk of medical errors due to misunderstandings between them and the health-care providers wearing face masks (10, 15). The wearing of face masks has particular relevance in classroom settings. In a survey undertaken by the Hearing Health Foundation to assess the impact of the pandemic on people with hearing loss, 85% of respondents reported that they were struggling due to their inability to read lips covered by face masks. CHALLENGES CAN BE OVERCOME • When planning for health services, including hearing care services, each country should pay specific attention to the needs of vulnerable groups. • Communication challenges associated with the wearing of face masks can be reduced by wearing clear masks which allow others to see facial expressions and read lips. As an example, the United States Centers for Disease Control and Prevention has recommended the wearing of clear face masks by teachers when interacting with children and young students with hearing loss. The wearing of clear masks is relevant in all settings and can improve accessibility for all people, not only those with hearing loss. 18 LGQTBI: Lesbian, Gay, Queer, Transgender, Bisexual, Intersexual “Being able to hear from a distance of at least six feet, while the speaker is covering the bottom half of their face has been daunting, to say the least, for people with hearing loss.” Hearing Health Foundation Survey SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 145 CASE STUDY I Coordinated multistakeholder action can address hearing care needs in times of war and strife Following nearly nine months of relentless air strikes, mortar rounds and car bombs pounding the city of Mosul, thousands of residents experienced hearing problems ranging from tinnitus to profound hearing loss. Many civilians who were exposed to repeated blasts suffered bleeding from their ears and many developed profound sensorineural hearing loss, making it impossible for them to communicate with others and forcing children to drop out of school, even after the war had ended. To provide services to thousands in need, a specialized hearing impairment centre was opened through a collaborative effort of the city’s leading hospital and a humanitarian organization. Within a year of its operation, the centre provided care to several thousands of people affected, including fitting 2000 hearing aids and referring many for cochlear implant surgery (16). CASE STUDY II Accessible health promotion and services for deaf persons People with hearing loss (and those with other disabilities) are often excluded, not only from HIV prevention education, but also from access to HIV testing and treatment (12). To address this, voluntary counselling and testing (VCT) services for HIV/AIDS, sympathetic to those who are deaf, have been successfully established in Kenya. The VCT services were combined with an education programme targeting people who are deaf. Peer educators provided accessible information at places such as churches for deaf people, learning institutions, seminars and other environments where deaf people congregate. This strategy had been proved successful in promoting safer practices for HIV prevention as well as HIV testing (17). In another initiative to reduce risk of heart disease in the United States of America, community health workers were trained to enable better communication with people with hearing loss. This led to significant improvements in nutrition, psychological well-being/stress management, and enhanced physical activity (18). WORLD REPORT ON HEARING146 The lack of accurate information and knowledge limits the population and health workers in their ability to address ear diseases and hearing loss, and perpetuates the associated stigma. 3.3 EAR AND HEARING CARE LITERACY AND STIGMA RELATED TO HEARING LOSS The success of public health interventions depends not only on their effectiveness and availability, but also on how prepared populations are to receive them. The knowledge, attitude and practices of the population receiving such services are highly relevant, as are those of health-care providers who make these interventions possible. Current challenges in this context are summarized below. 3.3.1 LIMITED EAR AND HEARING CARE LITERACY IN THE POPULATION AT LARGE It is widely known that people – including those with major, possibly life-threatening conditions – frequently avoid seeking medical care, even when they suspect it may be necessary to do so (19, 20). Few studies have been conducted to understand the reasons behind this; even fewer in the field of hearing care. Existing literature reveals that even when people are aware of the risk of hearing loss – such as when exposed to noise in occupational or recreational settings – and when they have protective means available to them (such as earplugs and earmuffs), they remain reluctant to use them. This could be attributed, in part, to several factors: discomfort caused by wearing the devices; underlying beliefs and sociocultural norms relating to noise exposure (21, 22); a lack of appreciation of the threat posed; or lack of perceived benefit of their use. A similar reluctance to seek care also exists around ear care and ear diseases which are often incorrectly addressed or ignored. The use of home remedies and potentially harmful practices, for example, is common in the context of ear and hearing care. Evidence of ear candling for cleaning ears is overwhelming (26), as is the use of Q-tips or cotton buds, even Prevalent sociocultural norms commonly influence people’s attitude towards loud music (21, 22), and govern their behaviour in loud surroundings (23, 24). High-intensity sound levels are often expected and accepted, and protective behaviours viewed with disfavour (25). SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 147 when these practices are shown consistently to lead to trauma, wax impaction or infection (27–30). This is so despite relevant warnings being provided on most commercially available products. Different types of oils are often used, and other unsuitable materials, such as matchsticks, feathers, pins, or pencils introduced to clean ears (29, 31). Not only can use of these products result in trauma to the ear canal, ear drum perforations and aggravate cerumen impaction, they can also lead to foreign bodies being left in the ear canal (29, 31) providing potential for infection or further harm. Even in cases where credible symptoms of ear pain and ear discharge are evident, people in many parts of the world choose to use home remedies, such as the instillation of plant juice and hot oil, or visit traditional healers, all of which can cause significant harm rather than benefit (32, 33). This lack of awareness and attention persists, even when people develop hearing loss; many remain unaware of their hearing loss, especially when it is mild or moderate in degree (34). Despite living in well-resourced settings, some people wait for years before having a hearing test or seeking care (34, 35). When hearing loss is identified and remedial interventions suggested, people often postpone their use to an undetermined future date claiming that there is “no need” for use, or that they “can manage for now” (36). This attitude has translated into consistently low rates in the use of hearing services and uptake of hearing aids, even in high- income countries where these services and aids are available (35, 37). Given the high impact of unaddressed hearing loss on mental health, the ability to continue working, and the quality of life and relationships, this gives serious cause for concern. The early identification and management of children with hearing loss is critical. Parents are commonly unaware of the need and possibility of hearing screening, and parental education is important both for identifying risk factors (38) and for seeking attention to mitigate delayed language milestones in their child. Often when a child is identified Schoolchildren in Kenya learn about ear and hearing care © S ee m a Ru pa ni S ha h Typically, those who are referred for hearing assessment recognize that they have had a hearing problem for around 10 years or more, are aged in their mid-seventies and have a substantial hearing problem. The older that people are when they present for assessment and intervention, the more difficult they find adaptation to and care of their hearing aids. It often takes 10 years for an individual to recognize that they have a hearing problem (but a shorter time for significant others) (34). WORLD REPORT ON HEARING148 with hearing loss, parents require considerable guidance and information to make the most suitable communication choice for their family, and to ensure appropriate follow-up and care for their child (39, 40). Such guidance may be unavailable and can result in delayed diagnosis and intervention. Inadequate and incorrect information can also lead to low satisfaction with rehabilitation efforts, and frustration in the use of hearing devices, especially when expectations regarding their performance are unrealistic (34, 36, 39, 41, 42). CHALLENGES CAN BE OVERCOME While the obvious response to this issue is to raise awareness on the relevance and impact of, and solutions for, hearing loss, this objective is not easy to achieve. A number of measures are required to address the challenge: • Providing accurate, relevant, accessible and understandable information, from a credible source and in a friendly manner, is essential. Good communication is key to effective public health (43, 44). • Implementing hearing screening programmes for different risk-groups can ensure that people do not face the adverse impact of hearing loss as a result of being unaware of their health condition (34). CASE STUDY I Accurate and friendly information can bring lasting change The school-based programme “Dangerous Decibels”* is an example of an effective strategy for promoting safe listening practices among school children during their formative years. Delivered as a single brief session, the programme was evaluated in the United States of America (45) and Brazil (46). The studies demonstrated the programme’s effectiveness at producing long-term improvements in knowledge, and positively influencing attitudes of fourth-grade students regarding loud sounds and hearing protection. Implementation of such programmes in a culturally appropriate manner on a widespread scale could create a lasting impact on hearing loss trends in the future. *See: http://dangerousdecibels.org/education/outreach-program-overview/ Public health communication is the scientific development, strategic dissemination, and critical evaluation of relevant, accurate, accessible, and understandable health information communicated to, and from, intended audiences to advance the health of the public (38). SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 149 CASE STUDY II Hearing screening is effective A study undertaken in Washington, USA, evaluated the efficacy of hearing screening in older adults. The study compared hearing aid uptake in a population. Adults tested with three different screening modalities were compared against adults who underwent no screening. Results clearly indicated that the rate of uptake in the screened population group was as much as double that of those with no screening. The study then evaluated patients’ self-reported improvement in hearing and communication ability a year after the intervention. Significantly greater improvement was reported in the screened population compared with the unscreened population (47). 3.3.2 EAR AND HEARING CARE LITERACY IN HEALTH-CARE PROVIDERS General practitioners and health workers play a critical role in ensuring that children and adults with hearing loss are identified in a timely manner and receive the interventions they require (35). However, health-care providers are commonly ill- informed about risk factor recognition which could help with identification (35, 39). Knowledge relating to common ear problems, such as otitis media, can be lacking, as can the importance of addressing these conditions (48–50). Even among staff involved in newborn hearing screening, critical gaps in knowledge relating to the causes of hearing loss, follow-up and referral of identified infants are frequently reported (39, 51, 52). Without such knowledge, health-care providers cannot be expected to impart the required information and guidance that could ensure timely diagnosis and appropriate interventions to persons with hearing loss, as well as continued support for them and their families during rehabilitation. Moreover, due to a lack of necessary skills, medical staff commonly struggle to communicate well with those who are hard of hearing or deaf (10–13); consequently, health needs among deaf populations often remain unmet. CHALLENGES CAN BE OVERCOME Training health-care providers enables them to: • provide appropriate instructions for ear care and hearing loss prevention to people in their communities; • recognize ear diseases and hearing loss with the aim of guiding people regarding their diagnosis and management; and • provide scientifically-accurate and culturally-sensitive information and counselling to the community (34, 39, 50, 53–55). WORLD REPORT ON HEARING150 CASE STUDY Training of community health workers brings benefits in the Region of the Americas* In the WHO Region of the Americas, the Primary Ear and Hearing Care Training Resources (PEHC-TR) have been widely used to train general practitioners (GPs), nurses (both qualified and still in training), community health workers (CHWs), community workers, teachers, health planners and programme coordinators of nongovernmental organizations (NGOs). They have also been used to sensitize specialist cadres on PEHC, including ENT surgeons, audiologists, paediatricians, obstetricians, public health specialists and other health professionals. Over a period of seven years (2006–2012), a total of 96 courses on PEHC (Basic, Intermediate and Advanced levels) were delivered in nine countries in the Region of the Americas: Bolivia, Cuba, Dominican Republic, El Salvador, Guatemala, Mexico, Nicaragua, Paraguay, and Peru with a total of 2330 persons trained. The results of this experience show that without minimizing the importance of the need for increasing the number and strengthening the capacity of EHC professionals (e.g. ENT specialists and audiologists) in low- and middle-income countries, there is a very significant role for PEHC training resources in contributing towards task-sharing of certain EHC interventions. This is especially relevant for community and primary level health-care workers, for example with activities such as raising awareness, early diagnosis and management, and prompt referral to specialist services. This training is reaping benefits across the region. For example, in Bolivia, trained health workers examined the ears and hearing of over 10 000 people, of whom more than 2000 were treated. Many others were referred for further evaluation and received care at secondary level centres. In a separate study, CHWs were trained in the provision of hearing care to children in parts of Brazil and the efficacy of the study assessed (56). The assessment confirmed that training was effective in improving the knowledge of CHWs so that they were able to undertake a variety of health promotion and surveillance-related tasks, including motivation of families regarding hearing loss prevention and care; promotion of good hearing-care practices leading to improvement in community knowledge on hearing loss; identification of hearing loss, referral and follow-up; and support to families of children who were diagnosed with hearing loss or undergoing rehabilitation. * Source: information contributed by Dr Diego Santana of CBM (and ref: 51) SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 151 3.3.3 STIGMA ASSOCIATED WITH HEARING LOSS Stigma – due to hearing loss, the related communication difficulties, and the use of hearing devices – is perhaps the most critical impediment to hearing care (39, 41), and is faced at all stages of the life course. Deep-seated cultural beliefs and myths about hearing loss persist in many communities of the world where a deaf child may be regarded, erroneously, as a bad omen who may bring misfortune upon the family. Such beliefs pose a challenge at every level. Since many families are reluctant to subject a child to a test that could indicate a disability, uptake of newborn hearing screening services can be hampered (39). Such beliefs can be even more harsh and restrictive in cases of the dual sensory loss of deaf-blindness (57, 58). Such negative societal views may limit the potential of, and opportunities available to, deaf and hearing impaired persons (59). While stigma directed at children may be considered to have the most far-reaching consequences, it is no less significant or debilitating when encountered later during the life course, for example with adults who develop hearing loss either at a young age or as they grow older. Behaviour resulting from experiencing stigma most commonly manifests as a denial of the difficulties in hearing and communication; choosing to self-isolate; or not wear a hearing device (60). Since hearing loss is generally believed to be a natural accompaniment to ageing, a person using a hearing aid may be perceived as “old” (56). Experiencing such “ageist” behaviour (61) can result in long periods of denial and concealment which in turn leads to mounting social stress and worsening hearing (60). Stigma related to hearing devices is the significant factor limiting their use; size and visibility of the device are reported as key features associated with user reluctance (60, 63). Marketing strategies aim to improve hearing aid uptake by promoting those which are small and barely noticeable when worn. Perversely, such practices may strengthen the belief that hearing loss and use of hearing aids are stigmatizing and should be hidden (60, 64). In many cultures still, within the traditional paradigm, deafness may be attributed to causes such as blood impurities, sorcery, spirits, ancestors, and retribution for failure to perform certain cultural rites. Since the arrival of a newborn is both a joyous and an emotion- laden event for parents and the entire family, the idea of screening apparently normal babies for a possible hidden abnormality is not considered desirable (39). Ageism marginalizes older people within their communities; reduces their access to services, including health and social care; and limits appreciation and use of the human and social capital of older populations (62). WORLD REPORT ON HEARING152 CASE STUDY Personal testimonials cited from Wallhagen 2010 (64) “I guess young people have near-sightedness. But hearing loss seems to be affiliated with ageing … the fact of having a big hearing aid says: ‘I don’t care how you look otherwise, but you’re old’ … So I like to think that I’m not old. But then the hearing part says ‘Wait a minute, you are old.’ I mean, especially if you wear something that says, ‘Hey guys, you know, I’m old! I’m an old man.’” “I think even today there are some things that many people in society just recoil to some physical or mental disability. Human nature I guess. And … in my case, you know, if I have, in addition to weak eyes, if I have weak ears, oh my gosh! You know, it’s another little bit of a handicap that, you know, that you don’t like to talk about.” “I think loss of hearing is portrayed that way in movies, you know media … it’s a common ailment, it just gets associated with ageing and loss of function and, you know, death [laughs], eventually. It starts to look like you’re slipping …” CHALLENGES CAN BE OVERCOME • The stigma associated with hearing loss, and use of hearing technology and sign language can be overcome through raised awareness within communities and by empowering people with hearing loss. The substantial challenges associated with stigma can be addressed by recognizing role models who are hard of hearing, deaf, or deaf- blind; by promoting associations of people with hearing loss; and by including people with hearing loss in policy dialogues. CASE STUDY Role models make a difference! The Deaf Role Models programmes have played a significant role in early intervention services for families in many states across the United States. Normal hearing parents may need support to cope with the challenge of communicating with their deaf child. Deaf Role Models address this need and support parents by sharing experiences, career goals, and highlighting their child’s potential. The programmes focus on communication and encourage family members in sign language learning to ensure that the child has access to a communication-rich environment for early language development. The lack of disclosure and associated actions may be attempts to escape societal stigmas associated with having a hearing loss (65). SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 153 This approach has resulted in improved language outcomes for deaf infants. It has also led to greater awareness on hearing loss, especially in affected families, and has helped families realize that hearing loss does not need to limit their child in any way (66). Talking about hearing loss can address the stigma related to it © O zl em K on uk se ve n, T ur ke y WORLD REPORT ON HEARING154 Significant gaps in the capacity of health systems challenge the provision of ear and hearing care services across regions and income-settings. 3.4 THE CHALLENGES FOR HEALTH SYSTEMS AND POTENTIAL SOLUTIONS Challenges encountered in the field of ear and hearing care extend to the health system level where the capacity to integrate this form of care is often limited. These, and other challenges based on the six building blocks of the health system are described below, with solutions proposed (Figure 3.4). Figure 3.4 Strategies to strengthen health system for IPC-EHC Leadership and governance Financing Health workforce Health Information Medical products, vaccines and technologies HEALTH (EAR AND HEARING CARE) SERVICES SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 155 3.4.1 CLINICAL SERVICES To ensure accessibility across the life course, EHC services must be integrated within national health services and delivered across all levels of care (community, primary, secondary and tertiary). Despite the evident high need for these services, data from countries indicate a lack of provision across all health service levels. While interventions for the prevention, identification and management of ear diseases and hearing loss must be initiated at the community and primary levels, these are mostly unavailable in low- and middle- income countries. Even at secondary and tertiary levels, availability of EHC services varies across regions and income levels. The data compiled for this report, sourced from a relatively small number of countries, indicate that most countries have no EHC services at community and primary level, and availability is inconsistent at secondary levels across regions and income-groups. Only approximately 38% of the world’s population is covered by newborn or infant hearing screening services, for example (67), despite the effectiveness of this strategy in ensuring optimal rehabilitation of deaf and hearing impaired children (as described in Section 2). According to a recent study, nearly one third of countries have minimal or no newborn hearing screening services (67) (see Table 3.1). Table 3.1 Global coverage of newborn and infant hearing screening* Coverage of Screenings Number of Countries Percentage of Countries Percentage of World Population GDP (nominal) per capita, average 0% to < 1% 64 32.7 37.63 3.7 1% to 9% 14 7.1 7.42 3.9 10% to 49% 19 9.7 8.33 10.7 50% to 84% 17 8.7 6.72 14.4 85% to 100% 41 20.9 32.59 40.4 No/insufficient data 41 20.9 6.09 8.6 Sum 196 100 98.78 Note: The entries do not add up to exactly 100% because of not listed dependent and disrupted territories. GDP = gross domestic product. *reproduced with permission from the Journal of Early Hearing Detection and Intervention (67) The provision of EHC services is often limited by the lack of required equipment and infrastructure in low-resource settings (68–70), and clinical services are hampered by the distances people commonly need to travel to access them. This is most marked for those living in rural communities and is a significant issue for health-care services WORLD REPORT ON HEARING156 in general, and hearing care services in particular. It is a problem encountered in both low- and high-income settings (20, 71, 72). Planning for these services is made complex due to the varied and often undetermined aetiology of hearing loss and the need for specialized skills to deliver them. For example, micro-ear surgery is often needed to address otitis media, prevent complications, and repair the hearing mechanism (see Section 2). Advanced surgical skills are needed for successful cochlear implantation and other implantable hearing devices; and audiological diagnosis, especially in infants, demands specialized knowledge. Hearing rehabilitation often requires a multidisciplinary effort, with prolonged therapy, for children to develop linguistic skills, gain education and become independent (73). Adults using hearing technology need instructions, auditory training, and counselling to ensure that they derive maximum benefit (53). In addition, the management of ear diseases and hearing loss is time sensitive. Delays in intervention aggravate the impact on health, communication and cognition; they may also adversely influence the final outcomes that can be achieved even when rehabilitation is initiated (34, 74). These factors make it essential to adopt a person-centred approach to ensure beneficial results. CASE STUDY Hearing care access in Malawi (72) “The distance to QECH [Queen Elizabeth Central Hospital] was perceived by most caregivers to be vast and a significant obstacle to taking up the referral. For example, one caregiver explained that their village was 100 km from Blantyre and, because of the challenging terrain, the journey would be at least 2.5 hours. It also required walking or cycling up steep hills to reach public transportation. Thus the journey was perceived to be challenging particularly for their children.” A caregiver described the challenges of making this journey: “It’s a long journey, imagine from here to Goliati you will ride a bike and in the hills you will be walking on foot. At Goliati we board another [minibus] to Limbe and then another to Queens. Its long journey and you might not be assisted the same day when you go.” (72) SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 157 CHALLENGES CAN BE OVERCOME • Adopting an evidence-based planning process can help countries prioritize and implement interventions most suited to their specific needs (75). The WHO H.E.A.R.I.N.G. package of interventions (outlined in Section 4), and available WHO tools, provide concrete guidance for undertaking this. CASE STUDY Different needs, different strategies Many countries, mainly (but not exclusively) in the higher-income group (e.g. Germany and the United Kingdom) have implemented newborn hearing screening programmes which have reaped significant benefits by minimizing the adverse impact of congenital hearing loss (76–82) and maximizing cost- savings (77, 78, 82). Implementing such programmes has proved effective in reducing occupational noise-induced hearing loss (83, 84) and has benefitted the population at risk. Countries such as India have focused attention on otitis media as the priority issue and implemented tools and initiatives to train primary level workers in this effort (85). Such prioritization is often essential to ensure the most effective use of available resources and must be undertaken by countries through review of evidence and stakeholder discussion. • Training health workers and primary level physicians/family doctors who provide services and undertake heath promotion at community and primary levels, can help to improve the knowledge level of communities regarding good EHC practices. Training can also facilitate early identification of common problems (50), and could help reduce the distance barrier by ensuring available basic services are nearby. CASE STUDY Primary Ear and Hearing Care (PEHC) training in Fiji improves knowledge and skills among health workers* It is estimated that 9.6% of the population in Fiji are living with disabling hearing loss, while 6% of the children have chronic suppurative otitis media. The single dedicated ENT facility is based at the main hospital, the Colonial War Memorial Hospital, and provides specialist ENT service to the 900 000 Training develops knowledge and skills among primary level healthcare providers in Fiji © O h Ch un gh ye on , F iji WORLD REPORT ON HEARING158 population of Fiji. Due to the limited access to specialist service, 90% of ear disease and hearing problems are managed by medical officers and nurse practitioners in nursing stations, health centres and subdivisional hospitals in 20 subdivisions. With the limited special training in ear and hearing care available to health practitioners, patients are often referred to a tertiary hospital for simple ear problems such as ear wax, ear infections, or a foreign body in the ear. This contributes to delays and complications for patients requiring urgent attention for ear infections who are on the ENT clinic waiting list. In order to address this issue and improve access to quality ear and hearing care in Fiji, the Ministry of Health and Medical Services (MHMS) made PEHC training available in the country. A two-day training course is now undertaken by medical officers and nurses, using the WHO PEHC training resources, and facilitated by an ENT specialist. Training focuses on clinical skills development such as history-taking, ear examination, conduct of simple hearing tests and ear toileting. During a two- year period, 313 primary clinical health workers were trained and certified in PEHC by the MHMS of Fiji. The outcome and impact of the training have been evaluated, and a significant increase in the knowledge and clinical skills of trainees is evident. The quality management rate increased from 5.4 to 7.3. Medical officers and nurses now feel empowered to diagnose and manage common ear diseases and identify hearing loss. Training has helped reduce the workload of the few available ENT specialists and has also helped improve levels of awareness of ENT care within the community. *narrative contributed by Dr Oh Chunghyeon, CWM hospital, Fiji • Using innovative measures, such as telemedicine, improves access to services, especially in remote or underserved communities. The potential of telemedicine has been further highlighted by the COVID-19 pandemic with physical distancing being an important preventive strategy (86). A WHO survey conducted during the pandemic reported disruptions in services for all noncommunicable diseases in 75% of the responding Member States (87). Among strategies being used to overcome the COVID-19 disruptions, the use of telemedicine to replace in-person consultations has been the most widespread, and undoubtedly is one of the most effective means of ensuring continuity of services while access to health- care facilities remains limited (87). Through COVID-19, telemedicine has been shown to play a significant role in improving access to care in remote and hard- to-serve areas (88). When applied effectively, telemedicine has the capacity to revolutionize the delivery of ear and hearing care and significantly improve the quality of health care by increasing accessibility and efficiency. Certain factors must be kept in mind to ensure the effective, safe and ethical use of telemedicine. These are summarized in Box 3.1. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 159 Box 3.1 Telemedicine: principles and uses What is telemedicine? Telemedicine is the delivery of health-care services by health professionals in settings where distance is a critical factor. Telemedicine services use information and communication technologies for diagnosis, treatment and prevention of disease and injuries, research and evaluation, and for the continuing education of health-care providers – all in the interests of advancing the health of individuals and their communities. Key benefits The principal services telemedicine offers in terms of remote assistance, include teleconsultations for remote diagnosis, treatment, follow-up, and monitoring. These are provided through the use of tools such as mobile or landline telephone, video, devices connected over the Internet, chat platforms, mobile apps or Internet based digital platforms (e.g. Skype or email) for telemedicine. Beyond clinical service provision, telehealth services are also relevant for: • distance learning for professionals to facilitate continuing education and training; • evaluation and collaborative research networks to share best practices and build knowledge; and • administrative management, for example billing services. Ear and hearing care services reach the rural parts of Alaska through use of telemedicine © S am an th a Kl ei nd ie ns t R ob le r Image received and expert opinion given Patient examined at remote site and image transmitted WORLD REPORT ON HEARING160 Key considerations When developing telemedicine, it is important that the service should: • respond to a clearly perceived need; • put the patient at the centre of the service; • have a clear, accountable governing structure, and ensure political commitment; • engage national stakeholders in planning and setting priorities; • elaborate and implement a strategic plan for integration into the overall national digital health vision, in line with the existing national digital health policy or strategy; • establish collaboration with all participating organizations and scientific institutions; • involve health professionals who will use the new service in its development; • verify cultural predisposition towards telemedicine in the population served; • ensure that the technology to be implemented is functional, user-friendly, accessible for all, including people with disabilities, and has the potential to be scaled up; • ensure interoperability across systems to facilitate intergration with the health system and patient health records; • guarantee effective reimbursement and capitation modalities; • establish meticulous evaluation mechanisms; • identify whether there are Accreditation Standards for telehealth that should be considered;19 and • ensure establishment of legal, ethical, privacy, and security regulations or frameworks and mechanisms for compliance. 19 In this context and where necessary, governments and other implementers can engage with the International Society for Telemedicine & eHealth (ISfTeH): https://www.isfteh.org/. CASE STUDY Telemedicine brings EHC services to remote parts of Alaska* Telemedicine has been successfully applied to address the barrier of distance between patients and providers in Alaska, the largest state in the United States (89, 90). In this vast, remote state, 75% of communities are not connected to a hospital by road, necessitating travel by plane to be seen by a specialist. Population sparsity and a low ratio of doctors to residents further contribute to delays in care. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 161 To address these challenges, tribally owned health-care systems across the state have developed a network of village health clinics where community health aides (CHAs) provide basic health care in remote communities that otherwise would not have direct access to doctors or nurses (91). The Alaska telemedicine network, which spans over 250 communities across the state, supports CHAs with specialty triage for all types of health concerns. This system allows specialists to make treatment plans for patients remotely, directing care provided locally by CHAs and determining when travel to a regional or tertiary care hospital is required for an in-person visit, imaging, or surgery (92, 93). Most telemedicine encounters are completed asynchronously and thus require minimal bandwidth, an important feature in remote communities that may not have reliable Internet access. For ear and hearing care, otoscopic images, history, and basic testing are transmitted from village health clinics to specialists, who return a treatment plan to the CHA within hours. Telemedicine consultation for ear and hearing care has been validated as equivalent to in-person examination and has reduced average waiting times for specialty appointments by 8 weeks (94– 97). As a result, service provision by the CHAs with telemedicine support is now standard practice for ear and hearing care across the state, from management of middle ear disease to pre-operative planning and postoperative follow-up. Most recently, the Alaska telemedicine network is being expanded from clinical care to include school-based preventive services. Telemedicine is used in prevention, to connect children who are referred through school hearing screenings to specialized triage to reduce loss to follow-up, a problem faced by screening programmes worldwide (98). This is important for Alaska Native children who experience high prevalence of infection-related hearing loss (99). These telemedicine-based models for clinical care and prevention have implications for remote communities globally, where specialists are often located in cities far from patients who need them. *Source: narrative contributed by Dr Susan Emmett, Duke University, USA 3.4.2 HUMAN RESOURCES Ensuring equitable access to the required services depends on a trained health workforce that provides ear and hearing care for different ages and across all care levels. The lack of an appropriately trained workforce is a barrier to improving access to services. The WHO report, Multi-country assessment of national capacity to provide hearing care, published in 2014 (100) revealed substantial gaps in the availability of EHC professionals such as ENT doctors, audiologists and speech therapists. Updating the available information on the basis of published data and survey responses revealed no major changes in the situation. The results of these WORLD REPORT ON HEARING162 analyses are shared below, with reference to some of the main service providers commonly engaged in diagnostic, therapeutic and rehabilitative services for people with hearing loss (101). EAR, NOSE AND THROAT SPECIALISTS20 ENT professionals provide specialist care in addressing ear disease, and are most commonly referred to for conditions affecting ears and hearing. Significant differences in the availability of ENT specialists are observed across WHO regions and income levels. As described in Figure 3.5a, approximately 56% of all countries in the African Region have fewer than 1 ENT specialist per 1 million population, in comparison with 67% of countries in the European Region which has more than 50 specialists per 1 million population. In terms of income level, 78% of low-income countries have fewer than 1 ENT specialist per 1 million, whereas 95% of high-income, and 69% of upper-middle-income countries have more than 10 ENT specialists per 1 million population (Figure 3.5b). The map presented in Figure 3.5c shows the availability of ENT specialists in all 138 countries for which data were available. Figure 3.5a Density of ear, nose and throat (ENT) specialists among WHO regions Figure 3.5a Density of ENT specialists among WHO regions 29 0 0 0 13 19 19 6 3 1 1 1 1 5 8 5 7 4 12 0 0 0 2 2 0 10 20 30 European Region Region of the Americas Western Pacific Region South-East Asia Region Eastern Mediterranean Region African Region Number of countries Number of ENTs per million >50 <=50 and >10 <=10 and >1 <=1 20 “ENT specialist” (or otolaryngologist) refers to medical doctors who have received training in the management of diseases of the ear, nose and throat, through a recognized degree or diploma course. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 163 Figure 3.5b Density of ear, nose and throat (ENT) specialists across World Bank income groups Figure 3.5b Density of ENT specialists across World Bank income groups 0 10 20 30 22 7 13 0 Upper-middle -income High-income 24 20 2 0 20 8 Lower-middle -income 4 0 Number of countries Number of ENTs per million >50 <=50 and >10 <=10 and >1 <=1 Low-income 14 2 0 2 Figure 3.5c Availability of ear, nose and throat (ENT) specialists in 138 countries for which data were available Number of ENT doctors per million population (000'000) 0 to <= 1 > 1 to <=10 >10 to <=50 >50 Data not available Not applicable *Number of Ear, Nose, Throat (ENT) doctors per million population (WHO 2020) The boundaries and names shown and the designations used on this map 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 and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. © WHO 2020. All rights reserved. Data Source: WHO Ear and Hearing Care Workforce Poject January 2020 update Map Production: WHO BDD unit World Health Organization 0 2,500 5,000 7,500 Kilometers *Status as of January 2020. WORLD REPORT ON HEARING164 AUDIOLOGISTS21 Audiologists provide specialist care in diagnosing and addressing hearing loss through hearing technology. The availability of audiologists is lowest in the WHO African Region where 78% of countries have fewer than 1 audiologist per 1 million population. The highest availability is seen in the European Region, where 52% of the countries have density of more than 10 audiologists per 1 million population (Figure 3.6a). In terms of income level, the difference between high- and low-income countries is substantial. As shown in Figure 3.6b, 65% of high-income countries have more than 10 audiologists per 1 million population, compared with 93% of low-income, and 76% of lower-middle-income countries which have fewer than 1 audiologist per 1 million. Figure 3.6c presents a map with the availability of audiologists in all 102 countries for which data were available. Figure 3.6a Density of audiologists (AUDs) among WHO regions Figure 3.6a Density of audiologists among WHO regions 14 1 2 4 3 3 21 4 1 9 4 3 4 1 4 1 5 5 3 0 8 0 2 00 10 20 30 European Region Region of the Americas Western Pacific Region South-East Asia Region Eastern Mediterranean Region African Region Number of countries Number of AUDs per million >10 <=10 and >5 <=5 and >1 <=1 21 “Audiologist” refers to a person having undergone a recognized degree or diploma course in audiology. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 165 Figure 3.6b Density of audiologists (AUDs) across World Bank income groups 0 10 20 30 Number of countries Number of AUDs per million >10 <=10 and >5 <=5 and >1 <=1 Figure 3.6b Density of audiologists across World Bank income groups 6 19 8 4 14 5 Upper-middle -income 00 Lower-middle -income Low-income 14 10 0 High-income 20 5 6 0 Figure 3.6c Availability of audiologists (AUDs) in 102 countries for which data were available Number of AUDs per million population (000'000) 0 to <= 1 > 1 to <= 5 > 5 to <=10 >10 Data not available Not applicable *Number of Audiologists (AUDs) per million population (WHO 2020) The boundaries and names shown and the designations used on this map 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 and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. © WHO 2020. All rights reserved. Data Source: WHO Ear and Hearing Care Workforce Poject January 2020 update Map Production: WHO BDD unit World Health Organization 0 2,500 5,000 7,500 Kilometers *Status as of January 2020. WORLD REPORT ON HEARING166 SPEECH THERAPISTS22 This specialist cadre is most commonly involved in the provision of rehabilitative therapy for people with hearing loss. Among WHO regions, the highest density of speech and language therapists is observed in the European Region, where 69% of countries have more than 50 speech and language therapists per 1 million population, followed by the Region of the Americas with 33%. The lowest density is observed in the African Region, where 72% of countries have fewer than 1 speech and language therapist per 1 million population (Figure 3.7a). In terms of income level, Figure 3.7b shows 79% of high-income countries having densities of 50 or more specialists per 1 million, whereas 87% of low-income countries and 66% of lower-middle-income countries have fewer than 1 speech and language therapist per 1 million. Figure 3.7c presents a map with the availability of speech and language therapists in all 124 countries for which data were available. Figure 3.7a Density of speech and language therapists (SLTs) among WHO regions Fig r .7a Density of speech and language therapists (SLTs) among WHO re ions 27 1 0 8 10 3 21 3 33 7 5 5 3 4 1 3 3 5 1 1 0 5 2 0 10 20 30 European Region Region of the Americas Western Pacific Region South-East Asia Region Eastern Mediterranean Region African Region Number of countries Number of SLTs per million >50 <=50 and >5 <=5 and >1 <=1 22 “Speech therapist” refers to a person having a recognized diploma or degree in speech therapy. (In some countries, speech therapy is a part of audiology training.) SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 167 Figure 3.7b Density of speech and language therapists (SLTs) across World Bank income groups Figure 3.7b Density of speech and language therapists (SLTs) across World Bank income groups 0 20 10 30 40 21 5 6 4 Upper-middle -income High-income 35 5 4 0 Low-income 00 2 13 Lower-middle -income 10 9 19 Number of countries Number of SLTs per million >50 <=50 and >5 <=5 and >1 <=1 Figure 3.7c Availability of speech and language therapists (SLTs) in 124 countries for which data were available (000'000) 0 to <= 1 > 1 to <= 5 > 5 to <= 50 > 50 Data not available Not applicable *Number of Speech-Language Pathologists/Therapists (SLPs/SLTs) per million population (WHO 2020) The boundaries and names shown and the designations used on this map 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 and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. © WHO 2020. All rights reserved. Data Source: WHO Ear and Hearing Care Workforce Poject January 2020 update Map Production: WHO BDD unit World Health Organization 0 2,500 5,000 7,500 Kilometers *Status as of January 2020. Number of SLTs per million population WORLD REPORT ON HEARING168 TEACHERS OF THE DEAF23 Teachers of the deaf are specially trained to address the educational needs of students in schools who are deaf and hard of hearing. As shown in Figure 3.8a, the highest density of teachers of the deaf is observed in the Region of the Americas and the European Region with 50% and 42% of countries, respectively, having more than 15 teachers of the deaf per 1 million population. The lowest availability is observed in the African Region with 35% of countries having fewer than 1 specialist per 1 million population. Among high-income, and upper-middle-income countries, 38% in the Region of the Americas and 44% in the European Region have more than 15 specialists per 1 million population, compared with low-income countries, where 50% of countries have fewer than 1 teacher of the deaf per 1 million population (Figure 3.8b). Figure 3.8a. Density of teachers of the deaf (TOD) among WHO regions Figure 3.8a. Density of teachers of the deaf among WHO regions 8 1 4 6 5 2 8 3 3 4 9 2 3 4 5 1 2 2 7 1 0 1 3 2 0 6 4 2 8 10 European Region Region of the Americas Western Pacific Region South-East Asia Region Eastern Mediterranean Region African Region Number of countries Number of TOD per million >15 <=15 and >5 <=5 and >1 <=1 23 A “teacher of the deaf” is a qualified teacher with the skills and knowledge required to provide quality teaching to mainstream learners and with the additional mandatory qualification and expertise in teaching deaf learners. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 169 Figure 3.8b Density of teachers of the deaf (TOD) across World Bank income groups Figure 3.8b Density of teachers of the deaf across World Bank income groups 0 10 20 Lower-middle -income 4 3 8 6 Upper-middle -income 4 12 6 5 Low-income 10 5 6 High-income 10 11 5 0 Number of countries Number of TOD per million >15 <=15 and >5 <=5 and >1 <=1 Figure 3.8c Availability of teachers of the deaf (TOD) in 86 countries for which data were available Number of ToD per million population (000'000) 0 to <= 1 > 1 to <= 5 > 5 to <=15 >50 Data not available Not applicable *Number of Teachers of the Deaf (ToD) per million population (WHO 2020) The boundaries and names shown and the designations used on this map 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 and dashed lines on maps represent approximate border lines for which there may not yet be full agreement. © WHO 2020. All rights reserved. Data Source: WHO Ear and Hearing Care Workforce Poject January 2020 update Map Production: WHO BDD unit World Health Organization 0 2,500 5,000 7,500 Kilometers *Status as of January 2020. WORLD REPORT ON HEARING170 Besides the cadres of service providers described above, many others play a significant role in the provision of hearing care; these include audiometrists, audiology technicians, hearing aid dispensers, rehabilitation specialists, and community health workers. Analyses of these service providers are not given in this report, primarily due to shortage of data and inconsistency in nomenclature. Nonetheless, study results clearly indicate large variations in EHC human resource availability, with significantly low ratios of population to service providers in many parts of the world. CASE STUDY Availability of EHC workforce in sub-Saharan Africa, Latin America and South-East Asia (69, 102, 103) Several studies conducted in different regions of the world highlight the immense global shortage in the EHC workforce. A study based on data from 22 countries in sub-Saharan Africa showed that all countries except South Africa have fewer than 1 ENT specialist, audiologist or speech and language therapist per 100 000 population. Some countries, for example Burundi and Malawi, have no practicing speech therapists. Comparisons between 2009 and 2015 showed that although the total number of specialists has increased during this period, when taking into account population growth, the ratio of ENT specialists to the population has actually declined in some countries, and the severe shortage in professionals remains. In Latin America, a study showed more than a 30-fold difference in the ratio of ENT specialists across countries – from 2.8 ENTs per million in Guatemala, to 61 in Argentina. In all countries studied, density of ENTs was concentrated primarily in capital areas and large cities, with rural areas disadvantaged. In Paraguay, for example, the density in the capital area was 148.8 ENT specialists per 1 million population, with only 4.1 per 1 million in the remainder of the country. In South-East Asia, a WHO report revealed that all countries except Thailand, with 2.68 ENT specialists per 100 000, had densities of fewer than 1 specialist per 100 000 population. The number of audiologists, audiometrists, speech and language therapists and sign language interpreters was even smaller, with all countries having 0.5 or fewer professionals in each category per 100 000 population. Across the region, the number of teachers of the deaf was higher than in other EHC cadres; Bhutan, for example, had a ratio of 2.73 teachers of the deaf per 100 000 population, and Thailand 1.49 per 100 000. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 171 GAPS IN THE EAR AND HEARING CARE WORKFORCE: CONTRIBUTING FACTORS, IMPACT AND SOLUTIONS To assess the true impact of the gaps and shortages in human resources within ear and hearing care and estimate the burden posed on existing professionals, WHO ran scenarios, taking examples from real-life situations. The scenarios were developed using the WHO Workforce Indicator for Staffing Needs (WISN) tool, and provided a very conservative indication of the gaps between human resources that are currently available and those that are required to undertake five common EHC interventions: ear examination and cerumen cleaning; hearing assessment; hearing aid fitting; post hearing aid fitting counselling; and diagnosing common ear conditions such as acute or chronic otitis media in children. Examples of gaps in these EHC interventions in selected countries are summarized in Box 3.2. The principal factor contributing to these gaps may be the lack of adequate educational and training opportunities for the development of the relevant cadres of service providers. Substantial gaps in educational opportunities for hearing care professionals were reported by WHO as being most pronounced in low- and middle-income countries of the world (100). Even in countries where human resources for the provision of health- care services and hearing care are available in relatively large numbers, ensuring their equitable distribution is often a challenge. This is due mainly to: • The concentration of EHC professionals and services in urban areas; urban-to- rural ratios are as high as 36:1 in some countries (68, 69, 102). • The predominantly clinical approach to ear and hearing care among professionals. Although a clinical approach for person-centred care is essential, it is insufficient for preventing and addressing the problem of hearing loss; the field requires professionals who can deliver high quality services at the individual level, while also addressing the subject at community and public policy levels (74). This requires professionals in the field of ear and hearing problems to be oriented towards the public health aspects of these conditions. • The lack of standardized terminology regarding the roles and competencies required for the different professional cadres which can create confusion among those working in the field of audiology and speech language pathology (104). The field of ear and hearing care requires professionals who can deliver high quality services at the individual level while also addressing the subject at interpersonal, organizational, community and public policy levels (74). WORLD REPORT ON HEARING172 Box 3.2 Estimating the gaps in the EHC workforce* 1) Diagnosis and management of common ear conditions: Oman and India WHO estimated, that in Oman, if all persons with wax impaction were to be treated by ENT specialists, at least 137 ENT doctors would be required to provide this service to the 181 000 persons in need of it – 40 more ENT specialists than those currently available. This gap in availability can be quantified as a ratio of 0.7, indicating that Oman has only about 70% of its workforce requirement to provide treatment for people with wax impaction. This is a large underestimation of the true gap, as this scenario assumed that ENT specialists were treating patients with ear conditions only, when in reality this cadre also provides care to persons with diseases of the nose, throat, head and neck. This option is therefore clearly unsustainable, given the current availability of ENT specialists in the country. Since many more GPs are available, the country has invested in training them to provide this service, especially in schools. It was estimated that if ENT specialists in Oman shared some of the activities involved in diagnosis and management of wax impaction with other cadres, up to 47% of their workload would be reduced. A similar assessment of the city of Delhi, India, showed that 1075 ENT specialists would be needed to identify and diagnose all patients between 0–15 years of age with common ear diseases. Currently, there are fewer than 650 ENT specialists in the city, indicating a ratio of 0.6. The number of GPs available in the city is considerably higher. Hence it may be rational to share these tasks with GPs. Even primary level health workers could play a key role in improving identification of common ear diseases (55, 102). Sharing tasks with other cadres could potentially reduce the workload of ENT specialists in Delhi by 50%. 2) Hearing assessment: Zambia The role of assessing hearing is typically attributed to audiologists, whose availability is limited in many parts of the world, especially in low- and middle- income countries. In Zambia, it is estimated that, with a population of more than 17 million, over 600 audiologists would be required to undertake hearing assessment of all those who could potentially have hearing loss. Since there is only 1 qualified audiologist and 14 audiometrists serving the needs of the entire country, this poses a major challenge to EHC provision. The ratio between existing and required staff was 0.01, indicating that current availability meets only about 1% of their workforce requirement for assessing people with hearing loss. As part of its efforts to increase access to these services, nurses are trained to undertake hearing tests in addition to their other tasks (105). This will lead to the reduction of the workload of audiologists by approximately 48%. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 173 3) Hearing aid fitting: Chile The role of fitting hearing aids is traditionally attributed to audiologists, although other cadres can be developed or trained to undertake this task (50, 55, 106) where needed. WHO examined the availability of hearing aid fitting services in a hospital in Santiago, Chile. A tertiary level centre catering to the health needs of people, the hospital would need 78 professionals to fit hearing aids to all those who are potentially in need. The ratio of 0.01, similar to that observed in Zambia, indicates that currently the hospital meets about 1% of the workforce requirement to undertake this intervention. Since there is currently only one cadre in the hospital, medical technicians trained in hearing aid fitting undertake this role along with hearing testing. 4) Counselling for the use of hearing aids and cochlear implants: Russian Federation It is important that people fitted with hearing devices are properly instructed in their use and provided with regular counselling, as part of the aural rehabilitation process (54). This role is commonly carried out by audiologists who fit the hearing aids. Although WHO estimated that 932 audiologists would be needed in the Russian Federation to provide this service, in 2018, there were only 389, indicating a gap between existing and required workforce of 0.42. Sharing this task with other cadres, such as speech therapists and audiometrists, could be useful not only in meeting the population’s needs but also in reducing the current workload of audiologists by almost 54% (101). TASK-SHARING AS A MEANS TO ADDRESS GAPS IN THE EAR AND HEARING CARE WORKFORCE Task-sharing involves the redistribution of clinical tasks, or their key components, among different cadres of health workforce teams. Unlike task-shifting, tasks are not taken from one cadre and given to another, rather additional cadres are given the capacity to take on specific tasks or actions. The appropriate reallocation of tasks, from highly qualified health workers to other health workers with shorter training and fewer qualifications, makes more efficient use of available human resources (107). Tasks traditionally performed by specialists in the field of ear and hearing care can be undertaken by non-specialists, such as community health workers, health aides, nurses and technicians (50, 55, 102, 106). This approach has been adopted successfully in other areas of health with resource needs (107–109); in the field of ear and hearing care it could improve access to such services as: WORLD REPORT ON HEARING174 • identification and care for common ear diseases at primary level (for example of ear conditions such as impacted wax; acute and chronic otitis media); • hearing assessment and screening; and • hearing aid fitt ing and post- fitting counselling. The roles traditionally played by different cadres in ear and hearing care and the possibilities for task-sharing (where traditional cadres are insufficient to serve population needs) are depicted in Box 3.3 and based on currently available models and studies, along with expert input (50, 55, 69, 106, 110). Incorporating task-sharing must be part of an overall workforce strategy, and collaborative – i.e. driven by all stakeholders, including EHC professionals and other health workers, with the aim of improving access to high-quality services for those requiring them. When developing a rational workforce strategy, important considerations are: (50, 55, 106–108) • Task-sharing should be implemented alongside other efforts to increase the overall number of health-care providers including skilled workers. • Task-sharing must be preceded by a situation analysis and assessment of currently available human resources for ear and hearing care. • Training needs and procedures should be defined, along with quality assurance mechanisms. • Tasks allocated to different cadres should comply with the health regulations of the country. • Automated devices or telemedicine may be useful tools in improving the success of task-sharing. When roles and responsibilities are shared from skilled to non-skilled cadres, supervision and support from ENT doctors or audiologists must be made available, as relevant. Trained nurses provide outreach services in the underserved parts of Zambia © R ac ha el H ap un da , M in ist ry o f H ea lth , Z am bi a SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 175 Box 3.3 Task sharing possibilities among different cadres of EHC professionals Primary level health workers and nurses* General practitioners Audiologists Ear nose and throat specialists Speech therapists Hearing screening Community level screening and referral Community level screening Community level screening Hearing loss assessment Audiological diagnosis in adults with recognition of red flags that indicate need for specialized care Audiological diagnosis in adults with recognition of red flags Hearing aid fitting In adults without any red flags Mainly in adults without red flags Mainly in adults without any red flags Hearing rehabilitation Auditory training and counselling for adults Auditory training and counselling for adults Identification care for common ear diseases (wax, otitis media) Identification and primary level care in the community, referral Diagnosis and management of common uncomplicated conditions Triaging, diagnosis and management of uncomplicated ear conditions Traditional roles Possible roles *includes existing cadres of health workers and other cadres that could be developed to provide care at primary level (111) CHALLENGES CAN BE OVERCOME The lack of human resources needs to be tackled through innovative workforce strategies to facilitate access to ear and hearing care. Such strategies must focus on: • Increasing the number of health workforce providing ear and hearing care through: – greater opportunities for education and training of relevant professional cadres including ENT specialists, audiologists, speech therapists, sign language teachers, hearing aid acousticians, audiometrists, as per the country’s needs (112). Besides establishing relevant educational programmes within the country, innovative solutions such as collaboration with experts outside the country or region is a potential option (50). WORLD REPORT ON HEARING176 – task-sharing as a means of reducing the need for highly trained professionals and redistributing activities routinely performed by these specialists to different cadres of health workers available in the country (50, 55, 69, 106) that have lower training needs. • Increasing the capacity of the available health workforce engaged in EHC provision: – For professionals in the field of ENT, audiology and speech therapy, this could involve including a module that focuses on the public health aspects of ear and hearing problems as part of professional education and training (39, 44, 113). – For community and primary level health workers, nurses and others engaged in providing care and raising awareness among the population at large (50, 106), this would require: ‚ training for on-the-job learning, to update their knowledge and skills ‚ supporting them in service provision through use of technology including m-health and telehealth services (55, 114). CASE STUDY I Developing audiology education in China In the 1990s, China acknowledged the need for specialists in the field of audiology and speech therapy. To address this human resource gap, the China Research and Rehabilitation Centre for Hearing and Speech Impairment established a multipronged approach that included: 1. Specialized educational programmes: In 1995, an educational programme to train hearing and speech rehabilitation professionals was started, in collaboration with leading universities in China. To date, over 1000 professionals have been trained, and provide care in national hearing and speech rehabilitation institutions across the country. In the coming years, the China Disabled Persons’ Federation aims to found the China Rehabilitation University. 2. Certification courses: These were developed in: – Hearing aid fitting – those offering hearing aid services and selling devices are trained through a vocational training course to fit and maintain hearing aids. Over 1000 hearing-aid consultants have benefitted from this programme since 2008. – Paediatric audiology – this was established in 2009. Professionals employed in national rehabilitation institutions receive this advanced training. To date, over 500 paediatric audiologists have been trained. 3. Programmes for continuing education: These were initiated in 2012 to update the knowledge and skills of those already employed in national rehabilitation institutions. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 177 These programmes are commonly undertaken in partnership with leading global universities, and nearly 200 professionals benefit from them each year. These measures have greatly strengthened China’s capacity to provide EHC services including implementation of a newborn screening and early intervention programme at the national level. CASE STUDY II Nurses provide ear care in South Tarawa in Kiribati* A community based nurse-led ear health service for children has been operational on the island of South Tarawa in Kiribati since 2013. Based on “specialist ear nursing” that has been running successfully in New Zealand since the 1970s, this approach has brought EHC services to Kiribati, where a large number of children have discharging perforations accompanied by hearing loss. It is well known that such ear disease, while being easily preventable can, if left untreated, lead to serious medical complications, that cannot be easily managed. To address this, nurses are trained in ear examination, the appropriate use of the otoscope, management of common ear conditions, hearing screening, and tympanometry. Initially the nurses worked in the three large primary schools of the island covering over 1500 students. In 2018, the scope of their work was expanded to cover a specialist ear clinic opened at the Tungaru hospital. The clinic was established in response to data received from the emergency department which showed that nearly 25% of people presented with ear problems. Ear nurses are now available at this specialist clinic, providing EHC services three days a week. They are often supported through training and in providing specialized care by specialist teams visiting the island. During the past six years, because of the regular care provided by ear nurses, the visiting team have seen a dramatic decrease in the chronic ear problems of the students under their care. It is now planned to expand this service to cover all primary schools on South Tarawa. This experience from Kiribati exemplifies how a community-based EHC service delivered by trained ear nurses has the potential to provide low-cost, easily accessible hearing care. *Source: narrative contributed by Ms Kahn Bury, nurse trainer, New Zealand WORLD REPORT ON HEARING178 3.4.3 HEARING TECHNOLOGIES The term “hearing technologies” covers devices such as hearing aids and cochlear implants. WHO estimates that in low- and middle-income countries, less than 15% of those who need assistive devices have access to them (115). The Global Burden of Disease study and WHO estimate that globally over 400 million people would benefit from use of hearing aids (105); of these, fewer than 68 million actually use one, suggesting an existing coverage gap of 83% (116). This gap is lowest in the WHO European Region (77%) and highest in the WHO African Region (90%) (Figure 3.9a). While low-income countries face the highest service gap (91%) with respect to hearing aids, even in high-income countries nearly three-quarters of the population in need of hearing aids do not use these devices (Figure 3.9b). Figure 3.9a Numbers and percentages of people in need but not using hearing aids among WHO regions Figure 3.9a Numbers and percentages of people in need but not using hearing aids/ gap in hearing aid use Western Pacific South-East Asia Eastern MediterraneanEuropeanAfricanAmericas 49.5 83% million 333.5 83% million 33 90% million 42.2 77% million 17.8 84% million 86.5 84% million 102.9 81% million Millions of persons not using hearing aids (95% UI) % of persons in need not using hearing aids Note: This illustration represents WHO regions, not country boundaries. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 179 Fig 3.9b Numbers and percentages of people in need but not using hearing aids across World Bank income groups Fig 3.9b Numbers and percentages of people in need but not using hearing aids across World Bank income groups 0 20 40 60 80 100 120 140 160 180 Number of people in millions High-income 130.2 84.5% Lower-middle -income 120 85.5% Low-income 61.9 74.5% Upper-middle -income 19.8 91% This analysis, based on GBD data, further shows that the use of a hearing aid substantially reduces the disability associated with hearing loss (in terms of YLDs), especially in those with moderately severe, or severe hearing loss. In general, hearing loss accounted for 29 million YLDs, without adjusting for hearing aid use. Accounting for current hearing aid coverage (17%) brought this value to 25.3 million YLDs – i.e. a reduction of 12.6% (13.9–11.5%) in morbidity. It is estimated that if every person needing a hearing aid used one, the burden of disease in this population would be reduced from 25 million to 10.3 million YLDs – a possible reduction of 59% (115). The limited access to hearing aids is a reflection of the overall challenges which limit access to EHC services and have been outlined throughout this section. In the context of hearing aids, these challenges can be summarized as: (i) high cost of hearing aids; (ii) lack of human resources and services to deliver, fit, maintain and support use of the aids; and (iii) low awareness of and stigma associated with hearing loss. With cochlear implants, there is limited research and data on access and factors limiting their use (41). However, as with hearing aids, issues such as high costs, and shortages of trained workforce and rehabilitation services, have resulted in their restricted accessibility to countries other than those in high-income groups – with considerable variation even within these (117, 118). If every single person in need of a hearing aid used one, the YLDs in this population would be reduced by 59%. WORLD REPORT ON HEARING180 CASE STUDY “There is considerable variation in access to cochlear implantation among children. In a study of five countries, the Flanders area of Belgium estimated pediatric utilization rates at 93% of eligible children. The UK and some European countries are also reaching over 90%. In the United States, about 50% of the children who could benefit receive cochlear implants. This does not look at utilization by adults, which could be lower still.” (117) While the issues relating to human resources and services have already been addressed, their importance cannot be overstated. An appropriately trained health workforce is key to delivering hearing technology (See 4.2 of Section 4). However, low levels of awareness limit the uptake of services for assessment and rehabilitation, even in settings where these are available, as is evidenced from the consistently low global use (77–90%) of hearing aids. Even when services are sought, unrealistic expectations of these devices affect their continued use and benefit. The issue of cost is critical to the use of hearing aids and cochlear implants. Costs vary hugely across the world and even within countries, depending on the device specifications and features. For example, in the United States alone, the price of hearing aids can range between US$ 500 and US$ 3000 (119); the average cost of bilateral hearing aids is US$ 4700 (71). At the same time, low cost devices are available in many places, such as India, where a digital device may sell for as little as US$ 50 (120). The use of devices often incurs out-of-pocket expenses, even in developed economies where they are easily available (71). Moreover, the costs involve not only the device itself, but also earmolds and batteries, as well as fitting and maintenance services. A study conducted in Nigeria showed that annual costs for hearing aid batteries alone could exceed the total annual income of an average African farming family (121). The cost barrier is aggravated by high import taxes and informal charges levied on medical appliances; and limited access to health insurance (120). The situation is further complicated by limited competition in this sector: a small number of manufacturers produce 98% of the devices sold globally (122) and typically concentrate on products most suitable for developed economies (120). Availability of affordable, high quality hearing technology is essential for hearing care provision. However, availability and affordability are not, by themselves, sufficient and need to be complemented with innovative approaches and effective service delivery models that can ensure equitable access to these devices and the relevant services that are crucial to their use. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 181 CHALLENGES CAN BE OVERCOME Addressing the gaps in hearing technology access and use requires a multipronged approach. Hearing aids and cochlear implants should be included as priority assistive products made available as part of government-led services, and their use promoted through: • Policies that can ensure easy access to high-quality, affordable and safe technologies and services (55, 123), in line with recommendations made in resolution WHA71.8 on improving access to assistive technology (124). This resolution, along with the WHO’s Priority Assistive Products List24 provides concrete direction on inclusion of hearing technologies and related services within national health systems. • Adopting affordable, high-quality products which comply with WHO recommendations, such as those set out in WHO’s Preferred profile for hearing- aid technology suitable for low- and middle-income countries (125). • Considering newer, game-changing developments in hearing technology (as outlined in Section 2) when deciding on those hearing technologies most suited to a country’s needs. • Validating and implementing effective service delivery models that do not rely exclusively on highly-trained professionals; for example teleaudiology (126, 127); use of self-fitting or trainable hearing aids (106, 120); direct-to-customer services (128); use of ehealth and mhealth platforms (54, 129); and training of locally available manpower (55). Such service delivery models should be adapted to the needs and health system of the country. • Raising awareness on hearing loss and reducing associated stigma through: – communication campaigns that provide accurate and accessible information. – strengthening associations of people with hearing loss. • Reducing costs by adopting measures such as waving import duties or taxes; pooled procurement; use of solar-powered batteries and locally-sourced materials (120); and innovative reimbursement schemes (55). • Research and innovation in design and delivery of hearing aids and cochlear implants to suit the unique requirements of countries, as well as development of user-driven hearing technologies that reflect the diverse needs of individuals with hearing loss. • Participation of hearing technology manufacturers in efforts to improve access by leveraging resources for training, and supporting larger numbers of practitioners. Manufacturers also have a role in ensuring their practices are aligned with maximizing access among all sections of society. 24 https://www.who.int/phi/implementation/assistive_technology/global_survey-apl/en/ WORLD REPORT ON HEARING182 CASE STUDY I Effective service delivery models and regulations can improve access to hearing aids Active community-based screening and hearing aid fitting improves access and brings cost and health benefits (130). A study conducted in India compared the efficacy of active screening for hearing loss followed by hearing aid fitting in the community, against passive screening and fitting at tertiary level. The study estimated the total costs and effects of these two approaches (i.e. community- based active screening approach versus fitting hearing aids to those who presented themselves for treatment at tertiary level facility). Health effects were estimated on the basis of compliance with the hearing aid, and associated changes in DALYs averted. It was evident that while both models were cost–effective, active screening followed by hearing aid provision was the slightly more expensive option. However, this moderate difference was adequately offset by the advantages it provided in terms of higher coverage of hearing aid services and greater health benefits as determined by the significantly higher number of DALYs averted through the active screening approach. CASE STUDY II Over-the-counter hearing aid delivery can improve access and affordability (128) In recent years, leading health agencies in the United States of America have prioritized provision of over-the-counter (OTC) hearing aids for improving access and affordability of these devices. A randomized control trial compared the “audiology best practice” (AB) model of service delivery with the OTC model and against a placebo. Both the models were efficacious in improving hearing and health outcomes in older adults. The OTC model had only marginally lower outcomes compared with the audiology best-practice model. This slight difference was offset by the potential of the OTC model in increasing accessibility and affordability of hearing aids, especially among older adults and was concluded to be an effective approach for future implementation. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 183 CASE STUDY III Government policies improve access to hearing technology: an example from the Russian Federation* In 1991, the Government of the Russian Federation introduced a cochlear implant programme throughout the country, which complemented the existing hearing aid programme. As a result, infants born deaf are now fitted with hearing aids or cochlear implants as required and rehabilitation services are provided. Each year, up to 1100 infants across the country undergo cochlear implantation in six federal centres, financed by the Federal budget. In addition, people of all ages can access hearing care, including hearing testing, hearing aid fitting and programming in regional audiological centres. Each year, 120 000 hearing aids are provided and paid for through the Federal Fund of Social Insurance. These measures have contributed greatly towards ensuring that people of all ages have access to the hearing care they need. *Source: information contributed by Dr George Tavartkiladze of the National Research Centre for Audiology and Rehabilitation, Moscow, Russian Federation; https://www.rosminzdrav.ru/ministry/61/22/stranitsa-979/ statisticheskie-i-informatsionnye-materialy/statisticheskie-materialy; https://www. rosminzdrav.ru/open/kollegiya-ministerstva-zdravoohraneniya-rossiyskoy-federatsii/ materialy-kollegii-ministerstvazdravoohraneniya-rossiyskoy-federatsii CASE STUDY IV Pooled procurement in the United Kingdom makes hearing aids accessible* Recognizing the benefits of addressing hearing loss at all ages, the National Health Service (NHS) provide free at point of delivery hearing aids (and cochlear implants) to children and adults that require these devices. It is estimated that each year 750 000 hearing aids are fitted by the NHS. To be able to provide high quality devices in an affordable manner, the government has adopted systematic measures that ensure quality and reduce costs. These include: • establishing the minimum technical specifications for hearing aids; • testing of all hearing aids and hearing aid manufacturers prior to their acceptance by NHS; • calling for tenders from manufacturers to achieve best possible technology and lowest possible pricing; and • establishing a country wide supply chain. WORLD REPORT ON HEARING184 • As a result of these policies, hearing aids are now available to the government at a highly competitive price. This approach has helped reduce the financial implications of hearing aid provision for the Government of the United Kingdom and benefitted people with hearing loss. *Source: information contributed by the NHS Audiology Supplies Group (ASG) working with the British Academy of Audiology (BAA). 3.4.4 HEALTH INFORMATION: DATA AND INDICATORS Access to hearing care services is not only highly variable across countries, but is also poorly measured and documented at country level (131). Indicators on hearing care are mostly not reflected within the health information systems of countries or well reported in literature. Survey data reported by WHO in 2014 (100) also shows a lack of epidemiological studies and information regarding prevalence and causes of hearing loss. Even when data are available, their usability can be limited due to differences in survey methods and definitions. Since reliable information forms the basis for evidence-based policy-making and is a means for measuring progress, its lack poses a significant challenge. Absence of information on ear and hearing care in national health information systems can be considered as both a cause for, and an indication of, its low priority within health systems. The lack of epidemiological data makes it difficult for countries to understand the need for, and relevance of, hearing care, and therefore to include it in their national health plans. Without prioritization and due attention, indicators for hearing loss are not included in the surveillance protocols that feed into health information systems, thus perpetuating a cycle. CHALLENGES CAN BE OVERCOME • Reliable data on ear and hearing care can be collected through the use of standardized tools such as the WHO Ear and hearing survey handbook (132), and supported by research agencies. Initial valid data that are useful for advocacy, can be gathered relatively easily and at low cost by following approaches such as the rapid assessment of hearing loss (RAHL) survey protocol (see Box 3.4). • To guide evidence-based decision-making, appropriate indicators for ear and hearing care should be included in the health information system of countries to provide a “synthesized” view of existing conditions and trends (133). SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 185 Box 3.4 WHO efforts to standardize data collection The following WHO tools can be used at health system level both for research, and to address the substantial gaps in data and information anticipated in the coming years: Indicators for monitoring provision of EHC services (134): This set of 14 core and 21 supplementary indicators supports the collection of consistent health system level indicators and provides a standardized measure to gain an overview of progress being made by countries in the field of ear and hearing care. Ear and hearing survey handbook (132): This WHO handbook provides guidance for undertaking a population-based prevalence study of hearing loss. The use of a standardized data collection methodology facilitates use of locally-gathered epidemiological data for regional and global estimates. The handbook includes an RAHL survey protocol which provides an easy and inexpensive method of assessing hearing loss prevalence. 3.4.5 GOVERNANCE AND FINANCING It is important that governments take leadership in setting strategic direction and implementing policies that address hearing loss in an integrated manner through their health systems, as with any other health condition. Lack of governance and leadership in the field of ear and hearing care is evidenced by the absence of national strategies or national committees addressing this in countries across all regions (100). This is despite the fact that a number of WHO Member States have initiated or accelerated action in this area of care, especially following the adoption in 2017 of the World Health Assembly resolution on prevention of deafness and hearing loss (1). The lack of leadership and governance is attributed to the lack of political attention, low perceived priority of hearing loss as a public health issue, and the lack of financial resources due to competing health priorities (100). Despite the high impact of hearing loss, availability of cost–effective interventions, and WHO-led global action, the challenge of limited financial resources to address hearing loss persists at global and country level (131). WORLD REPORT ON HEARING186 CHALLENGES CAN BE OVERCOME • Tailored communication and advocacy can be effective drivers for policy formulation (43, 135). Such advocacy has to be undertaken at global, regional and national levels and be based on facts and figures supported by evidence (136). • Overcoming the challenges of limited finances and political commitment requires a multipronged approach that focuses on: (i) defining a common global vision and marshalling international resources to support ear and hearing care (131); (ii) integrating EHC services into health-care services across the life course (55); and (iii) adopting innovative solutions and technology that can reduce costs (55, 131). Strategy development for ear and hearing care in Tunisia © M ou na S ak ly, M in ist ry o f H ea lth , T un isi a SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 187 CASE STUDY I WHO accelerates global action for hearing care through advocacy Since 2011, WHO has promoted World Hearing Day (137) as an annual advocacy event that highlights the importance of, and need for, ear and hearing care. Observed with a unique theme each year, World Hearing Day has been successful in engaging the efforts of different stakeholders across all WHO regions. Several events are organized in countries across the world in an effort to create awareness on ear and hearing care within the population at large and with policy-makers. It is also an opportunity to undertake screening and provide services to targeted sections in the community. In 2020, nearly 600 events from 107 countries were registered for World Hearing Day, marking the growing relevance of this public health field. In 2018, in continuation of its advocacy efforts and to strengthen these through collaborative multistakeholder action, WHO launched the World Hearing Forum (WHF) (138) as a global advocacy alliance developed with partnership of all sectors engaged in ear and hearing care. WHF advocates for prioritization of hearing care and implementation of the World Health Assembly resolution WHA70.13 for prevention of deafness and hearing loss. The alliance defines the overall vision of global action for hearing loss. By gathering all stakeholders into one united front, the Forum hopes to have sustained and consistent advocacy that will result in greater prioritization of hearing care by public health agencies and governments. CASE STUDY II Pakistan prioritizes ear and hearing care in response to World Health Assembly resolution WHA70.13* In 2017, the World Health Assembly resolution WHA70.13 on prevention of deafness and hearing loss, urged Member States to prepare national plans for the prevention and control of major causes of hearing loss, and for its early detection and management within the framework of health systems. Acting in response to this, the Government of Pakistan initiated actions and included provision of hearing aids free of cost to all its citizens, and a limited number of cochlear implants for deaf children. Steps are currently underway to launch the largest National Newborn Screening Programme, the implementation of which will ensure early identification of hearing loss, with the aim of ensuring prompt rehabilitation, so that every citizen of the country including those with hearing loss, have the opportunity to realize their highest potential. *Source: narrative contributed by Dr Maryam Mallick, Technical Advisor, WHO Pakistan WORLD REPORT ON HEARING188 CASE STUDY III Kenya responds to the call of the WHA resolutions for ear and hearing care Responding to the call of the World Health Assembly resolutions on hearing loss adopted in 1995 and 2017, the Government of Kenya launched the national EHC strategy in 2016. The first step taken was to set up a national EHC technical working group and carry out a detailed situational analysis using the WHO EHC situation analysis tool. Based on this analysis, a comprehensive plan was outlined for a healthy and productive nation free from preventable hearing loss. Since the launch of the strategic plan, a number of concrete steps have been taken for its implementation across the different counties of Kenya: • The national government has recognized the cadres of audiologists and speech therapists, providing a pathway for these cadres within the public service domain. • Provision of hearing aids has now been included as a benefit under the national insurance fund. • Concerted efforts are continually being made to improve the infrastructure and human resource availability for ear and hearing care in public and private sector facilities. Besides these, the country also serves as a reference point for other countries in the East and Central African region, playing a pivotal role in training of the EHC workforce as well as development of national strategies in seven neighbouring WHO Member States. SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 189 CASE STUDY IV Nongovernmental sector plays a role in improving access to ear and hearing care* Nongovernmental organizations can play a significant role in supporting governments in the planning and provision of ear and hearing care. All Ears Cambodia (AEC) is an example of a local nongovernmental organization that has been working in partnership with the government for seventeen years to provide specialist ear and hearing care services to over 28 000 people in need of these. Services focus on primary ear health care, treatment of ear infections in children, hearing testing and hearing aid fitting. Nine outreach clinics bring ear and hearing care services to remote and scattered villages in the country. The organization also supports the development of technical guidance and materials and conducts educational programmes in community and local schools to prevent hearing loss and change existing attitudes. * Source: narrative provided by Glyn Vaughan of All Ears Cambodia CASE STUDY V Advocacy in the WHO African Region drives policy formulation in Madagascar* In 2018, to promote action on ear and hearing care in response to resolution WHA70.13, 11 African countries came together with WHO and key non-state actors in the field to form the “Regional EHC forum for Central, East and Southern Africa”. The Government of Madagascar was a part of the Forum and, based on the outcomes, established a national Ear and Hearing Care Committee in partnership with the international NGO, CBM.** During 2019, under the leadership of the Ministry of Health (MoH) of Madagascar, a situation analysis was conducted, along with strategic planning, using WHO tools and guidance. The Government of Madagascar is now collaborating with multiple stakeholders to develop a national strategy for ear and hearing care, within the service of the Eye, Hearing and Oro-Dental Health. As a first step in this direction, the MoH led an awareness campaign for ear and hearing care on 3 March 2020 with nationwide activities to highlight hearing loss. 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Available at: https://www. who.int/activities/celebrating--world--hearing--day , accessed November 2020. 138. World Health Organization. Promoting the World Hearing Forum. Available at: https:// www.who.int/activities/promoting-world-hearing-forum , accessed November 2020. WORLD REPORT ON HEARING198 Collaborative action can transform health systems* *Contributed by Karen Mojica of Mayflower Medical Outreach, and Joaquin Escoto of the Ministry of Health, Nicaragua © O tto M ej ía , N ica ra gu a SECTION 3 CHALLENGES FACING EAR AND HEARING CARE 199 At the time we started policy discussions on ear and hearing care in Nicaragua only two hospitals in the capital city provided any services for identification and management of ear and hearing problems. Surgeries for treating common ear diseases were infrequently done. People commonly had to travel far and wait long periods of time just to get a diagnosis of otitis media. Having launched a national programme for people living with disabilities ‘Todos con Voz’, the Ministry of Health, along with WHO, international NGOs and local professional groups, in 2012 developed a comprehensive strategy to integrate ear and hearing care. Taking immediate steps, 59 doctors and nurses were trained in EHC, who further trained 1300 health workers, nurses and doctors to deliver services at the community level. In parallel, infrastructure was developed at all levels of care provision. Over the years, basic ear and hearing care services have been established in 15 of the 19 SILAIS, with clinics run by ENT specialists and audiometric technicians. Surgical services were strengthened at the secondary and tertiary levels. Over the last six years, more than 18 000 audiological tests have been conducted and over 13 800 individuals have benefited from the programme. In 2017, the first national newborn screening programme was launched. Nearly a thousand babies are already receiving rehabilitation though this programme. We have come a long way, but still have much more to do. We believe that it is the united efforts of all stakeholders that has made it possible for us to provide the ear and hearing care services the country so badly needed. Joaquin Escoto, programme manager, Todos con Voz, Ministry of Health, Nicaragua WORLD REPORT ON HEARING200 SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 201 SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE WHO’s mission in the field of ear and hearing care: “Make ear and hearing care accessible for all”. 4.1 OVERVIEW O Universal health coverage (UHC) is the key to achieving Goal 3 of the Sustainable Development Goals (SDG3) by 2030. SDG3 requires that all people, including those with hearing loss and ear diseases access quality and affordable services without suffering financial hardship. O Access to ear and hearing services is summarized in the term “Ear and hearing care”, which refers to a broad range of services for health promotion, prevention, identification, management and rehabilitation, delivered through national health systems, and that address ear and hearing conditions at all stages throughout the life course. O The scope of ear and hearing care extends beyond health systems, covering access to education and communication as well as other support required for persons with hearing loss and their families. This is achieved through multisectoral collaborative action, in line with the principles of integrated people-centred ear and hearing care (IPC-EHC). WORLD REPORT ON HEARING202 O Key public health interventions for EHC provision across the life course are summarized in the acronym “H.E.A.R.I.N.G.”: Hearing screening and intervention; Ear disease prevention and management; Access to technologies; Rehabilitation services; Improved communication; Noise reduction; and Greater community engagement. O Implementing H.E.A.R.I.N.G. interventions can significantly benefit countries. Annually, US$ 1.33 per capita additional investment is required into the health system to scale up the identification, treatment, and rehabilitation of ear and hearing problems. Over a 10-year period, this promises a return (or gain) of nearly US$ 16 for every 1 dollar invested. O Making this investment over a 10-year period has the potential to benefit nearly 1.5 billion people across the world, avert 130 million DALYs, and bring productivity benefits of over US$ 2.4 trillion. O Each country must determine which H.E.A.R.I.N.G. interventions best suit its needs through an evidence-based consultative prioritization exercise. Implementation must occur through an IPC-EHC approach and ensure that people receive a continuum of EHC services across the life course, delivered through a strengthened health system. O The vision of IPC-EHC encompasses services that empower individuals and communities; strengthen governance and accountability; reorient the model of care by prioritizing ear and hearing care at primary and community levels; are coordinated within and across sectors; and create an enabling environment. O The provision of IPC-EHC services requires action at all levels of the health system through: – Leadership and governance, for ensuring equitable access to EHC services at all levels of health-care service provision through: policy guidance and planning; collaboration and coalition-building across sectors; regulations including their enforcement; and oversight. – Sustainable financing and social protection, so that people can access quality EHC services, and are protected from financial catastrophe or impoverishment associated with having to pay for them. – A competent, motivated and empowered health workforce, which is essential for the effective provision of quality EHC services. Given the current shortages in the EHC workforce, this requires comprehensive steps including: scaling up and financing education programmes for the EHC health workforce; task- sharing through the training of other (non-EHC) cadres of health workers; and organizing health workers to deliver services at all levels of care. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 203 – Robust health information systems that support IPC-EHC, and help to determine population needs and priorities; identify gaps in health systems’ capacity; and report progress. This requires the setting of realistic and time-bound targets, along with tracking progress towards these through suitable indicators and standardized monitoring tools. – Equitable access to essential medical products and technologies of assured quality, safety, efficacy and cost–effectiveness through inclusion in government lists of EHC-related diagnostic equipment, medicines, surgical equipment (for ear surgeries), hearing technologies and relevant vaccines. O Governments and partners should also focus on relevant and impact- oriented research that supports implementation of IPC-EHC across the life course. Identified areas for EHC research are listed later in Section 4. O Section 4 further builds on the World Health Assembly resolution of 2017,25 and sets a global target of 20% relative increase in coverage of EHC services, to be reached by the year 2030. Tracer indicators for monitoring progress towards the global target are outlined and a framework for monitoring proposed. O Section 4 sets out recommendations to the ministries of health of WHO Member States, international organizations, and stakeholders in the field of ear and hearing care, outlining actions needed to include IPC-EHC in their national health-care systems as a step towards fulfilling the mandate of UHC. Whereas Sections 1–3 reviewed the various factors which impact a person’s hearing across the life course, the available solutions to prevent and address hearing loss, and the challenges to be faced when ensuring accessible ear and hearing care, Section 4 outlines the vision of ear and hearing care and its place in the context of UHC. It introduces a set of key interventions that are essential for ensuring that people have access to EHC services, in line with the principles of UHC. The delivery of these interventions can only be achieved through health systems following an integrated people-centred approach. Section 4 further outlines the key enablers within and in support of the health system and makes recommendations for future action. 25 See: https://apps.who.int/gb/ebwha/pdf_files/WHA70/A70_R13-en.pdf WORLD REPORT ON HEARING204 Universal health coverage: an ethical issue and a political choice. Dr Tedros Adhanom Ghebreyesus, Director-General, WHO, 2017 4.2 H.E.A.R.I.N.G. INTERVENTIONS AS PART OF UNIVERSAL HEALTH COVERAGE Sustainable Development Goal 3 (SDG3), to be achieved by 2030 (2), aims to ensure healthy lives and promote well-being for all at all ages. WHO estimates that, at present, half of the world’s population has no access to the health care they need, and has aligned its work to meet the challenge posed by SDG3. The principal element of this is summarized in target 3.8 which focuses on achieving UHC to facilitate access to quality, affordable, essential health-care services (1, 2). Universal health coverage emphasizes the importance of access both to quality health services and to health information as a basic human right; furthermore, it is crucial for enabling the achievement of all other SDG3 targets. Given the substantial need for services to address ear disease and hearing loss, the mandate of this target cannot be fulfilled without the inclusion of these services within its purview. The three main dimensions of universal health coverage, as illustrated in Figure 4.1, are: (3) 1. expanding priority services to include other services which were not available to the population earlier; 2. expanding coverage of services to include more people, especially low-income groups, disadvantaged groups, and rural populations; and 3. reducing out-of-pocket payments as a means of improving access to services and financial risk protection. Universal health coverage means that all people receive the health services they need without suffering financial hardship … It includes the full spectrum of essential, quality health services, from health promotion to prevention, treatment, rehabilitation, and palliative care (1). SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 205 Figure 4.1 The three dimensions of universal health coverage Figure 4.1 The three dimensions of universal health coverage Services: which services are covered? Direct costs: proportion of the costs covered Population: who is covered? CURRENT POOLED FUNDSExtend to non-covered Reduced cost sharing and fees Include other services As countries advance in achieving these three dimensions, it is important that the quality and safety of services are always considered and maintained. To support countries in their efforts, WHO is currently developing an online compendium of priority interventions, along with the OneHealth Tool (4), a specialized software that can facilitate decision-making according to country needs and priorities (Box 4.1). To promote equitable access to EHC services across the life course, WHO proposes a set of key interventions that must be delivered through the health systems in an integrated manner. © S ta rk ey H ea rin g Fo un da tio n Older adults are screened for hearing loss in the community clinic in Indonesia WORLD REPORT ON HEARING206 Box 4.1 UHC list of priority interventions and the OneHealth Tool (4) Each country must follow their own path to achieve the goal of UHC and decide what services to cover and actions to prioritize, based on people’s needs and available resources. To facilitate the choices that have to be made by countries in achieving UHC, WHO has developed a special software – the OneHealth Tool – and is currently putting together an online compendium of priority interventions. This will include a wide range of WHO-recommended interventions and will also outline their resource implications. The compendium will help to guide country discussions for identification and prioritization of services to be included within health benefit packages. It will also include recommended evidence-based interventions to address the needs of those at risk of or living with ear and hearing problems in an equitable manner and without undue financial hardships. The WHO OneHealth Tool can be used by countries to inform national strategic health planning and costing in low- and middle-income countries by helping planners to answer the following questions: • What health system resources are needed to implement the strategic health plan? • How much would the strategic plan cost, by year, and by input? • What is the estimated health impact? • How do costs compare with estimated available financing? 4.2.1 EAR AND HEARING CARE THROUGH IMPLEMENTING THE H.E.A.R.I.N.G. PACKAGE Ear and hearing care refers to a broad range of services addressing ear and hearing problems at all stages through the life course, delivered through national health systems, and that include health promotion, prevention, identification, management and rehabilitation. The scope of ear and hearing care extends beyond health systems to cover the provision of accessible education and communication (e.g. through sign language learning or access to captioning etc.); as well as other support (e.g. social support) required for persons with hearing loss and their families, delivered through multisectoral collaborative action, in line with the principles of integrated people-centred ear and hearing care outlined later in Section 4. The proposed package of EHC interventions which correspond to the acronym “H.E.A.R.I.N.G.” includes actions that are required for holistic EHC provision through an integrated life-course approach. These must be considered by a country or a public SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 207 health programme when developing its health service policies for working towards universal health coverage. As reflected within the definition of ear and hearing care, the package is not limited to the health system, but also includes interventions that require a collaborative effort outside the formal health service delivery system. It is also important to note that the H.E.A.R.I.N.G. set of interventions does not reflect some of those mentioned in Section 2, and which are relevant for prevention and management. Examples of actions not mentioned here, but would be relevant to countries based on their needs, include immunization against rubella and meningitis; maternal care; nutrition; and the prevention and monitoring of chemical exposure in the workplace. The set of H.E.A.R.I.N.G. interventions is not intended to be exhaustive, but rather to summarize the public health interventions most likely to be effective for integrated EHC provision across the life course. The aim of these public health interventions is to direct countries towards prevention efforts and enhance provision of clinical services at individual and societal levels. This package is the result of an evidence-based process, undertaken in discussion with the WHO review group, external stakeholder and expert groups. The process followed is summarized in Figure 4.2; the main focus and objectives of the interventions are set out in Table 4.1. Figure 4.2 Process followed for identification of the H.E.A.R.I.N.G. set of interventions a Internal WHO review Determine population needs and priorities Integrate EHC indicators into Health Information System Set targets, determine indicators Track progress through standardized tools Report results and impact Listing all interventions required to address hearing loss across the life-course Review of evidence for listed interventions; Discussion with WHO review group Review of evidence with respect to eff ectiveness and cost- eff ectiveness of identifi ed interventions; Return-on-investment (ROI) studies undertaken to assess ROI in diff erent economic settings Expert and stakeholder consultations (3) to fi nalize list of interventions Each country must determine which H.E.A.R.I.N.G. interventions are most suited for its own needs, through a consultative prioritization exercise that is evidence-based, and considers, among other things, cost– effectiveness, equity and financial risk protection. WORLD REPORT ON HEARING208 Table 4.1 H.E.A.R.I.N.G. package of ear and hearing care interventions HEARING SCREENING AND INTERVENTION EAR DISEASE PREVENTION AND MANAGEMENT ACCESS TO TECHNOLOGIES REHABILITATION SERVICES IMPROVED COMMUNICATION NOISE REDUCTION GREATER COMMUNITY ENGAGEMENT HEARING SCREENING AND INTERVENTION Objective: To ensure the timely detection of, and interventions for, hearing loss, in those most at risk. Life course: The fixed points across the life course are: newborns and infants; pre-school and school-age children; adults at higher risk of hearing loss (e.g. from exposure to noise or ototoxic chemicals at the workplace or those being administered ototoxic medicines for other illnesses); and older adults. What is included: Hearing screening and early intervention programmes targeting: • newborns and infants; • pre-school and school-age children; • all those at higher risk of hearing loss, for example, due to exposure to noise or ototoxic chemicals at the workplace, and those being administered ototoxic medicines for other illnesses; and • older adults. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 209 EAR DISEASE PREVENTION AND MANAGEMENT Objective: To prevent and treat ear diseases at the earliest possible stage to avoid associated hearing loss and other complications. Life course: Children are most at risk of diseases such as chronic otitis media, although these can also occur in adolescents and adults. What is included: Addressing common ear diseases through: • prevention (e.g. good EHC practices or immunization); • early identification at community and primary levels through trained workforce; and • medical and surgical management at primary, secondary and tertiary levels (as required for acute and chronic otitis media). ACCESS TO TECHNOLOGIES Objective: To improve access to hearing aids, cochlear implants or hearing assistive technologies and related services to all those in need. Life course: across all ages. What is included: • access to affordable, high-quality hearing aids and cochlear implants, along with batteries and services for maintenance; and • availability of hearing assistive technologies (e.g. loop systems in public venues and schools). REHABILITATION SERVICES Objective: To optimize functioning in people with hearing loss through auditory and speech rehabilitation services. Life course: mainly required in children aged 0–15 years and adults aged above 60 years. What is included: • multidisciplinary, family-centred hearing and speech rehabilitation services for children with hearing loss; and • counselling and auditory rehabilitation for adults with hearing loss, especially older adults. WORLD REPORT ON HEARING210 IMPROVED COMMUNICATION Objective: To facilitate participation in all activities relevant to people with hearing loss Life course: across all ages. What is included: • sign language learning and interpretation services, especially in educational and health-care settings; and • captioning services in professional and recreational settings as a means of improving access to audio content for those with hearing loss. NOISE REDUCTION Objective: To ensure that no individual faces the risk of hearing loss due to loud sounds. Life course: adolescents, and adults of working age. © R ic ar do M ar tin ez Captioning improves accessibility of meetings for people with hearing loss SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 211 What is included: • occupational hearing conservation programmes for the reduction of hearing loss in the workplace. • adoption of the global standard for safe listening devices (ITU-T H.87026) as a national standard; • regulations for safe listening venues; and • targeted programmes to change listening behaviours among pre-adolescents and adolescents. GREATER COMMUNITY ENGAGEMENT Objective: To change behaviours and attitudes towards hearing loss and its causes. Life course: across all ages. What is included: • a multipronged communication strategy that generates greater community awareness and engagement for promoting: – healthy EHC practices, and safe listening – early identification of, and interventions for, hearing loss • strengthening or establishing organization and associations that represent people who are hard of hearing or deaf, and empowering these groups to become active and articulated stakeholders; and • collaborating with all stakeholders, including those who are deaf and hard of hearing, to identify and address the causes of stigma associated with hearing loss and ear problems. 26 See: https://www.itu.int/rec/T-REC-H.870-201808-I Noise is now being acknowledged as an important public health issue and a top environmental risk faced by the world today. Given its far- reaching effects on hearing, as well as on other aspects of human health, strong, coordinated and urgent action is needed with the participation of governments, industry, civil society and the public at large. WORLD REPORT ON HEARING212 Investments made in the timely and effective provision of H.E.A.R. interventions will result in health benefits, productivity gains and economic gains for society. 4.3 INVESTING IN EAR AND HEARING CARE: THE BUSINESS CASE As countries move towards the goal of universal health coverage and identify benefit packages most suitable for their needs, it is essential that the budgetary impact of adopting different interventions and the benefits of making such an investment are fully understood. WHO estimates that achieving the SDG target of UHC would pose an additional annual cost of US$ 371 billion in low- and middle-income countries,27 equivalent to US$ 58 per person per year, which would save 97 million lives and significantly increase life expectancy (5). For this report, and to assist countries in understanding the affordability and effectiveness of EHC provision, WHO estimated the additional financial resources required for delivering EHC interventions through health systems, and the return such investments would bring over time. Analysis focused on the additional cost of scaling up integrated delivery of the four H.E.A.R.I.N.G. interventions that are directly delivered through the health systems: (i) Hearing screening at different stages in the life course; (ii) Ear disease prevention and management; (iii) Access to hearing technologies across the life course; and (iv) Rehabilitation services across the life course. The return for every dollar invested was assessed, including the health impact and productivity gains resulting from improved employment opportunities (6). The time-frame for the analysis was set for 2020–2030. Two scenarios were considered: a “progress” scenario where scale-up reaches 50% of the population by 2030 (or remains at baseline coverage if already above 50%); and an “ambitious” scenario where scale-up addresses 90% of the population needs by 2030. The key outcomes of the analysis are summarized in Figure 4.3 and detailed information provided in the text following. 27 Country income levels used in the World report on hearing are determined by the World Bank. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 213 Figure 4.3 Investing in ear and hearing care: global requirements and benefits Avert Benefit Result in health gains equivalent in value to (US$) Result in productivity gains equivalent in value to (US$) Bring a return for every 1 dollar invested of (US$) SCALING UP EHC COVERAGE (%) BY 2030 REQUIRES: PROGRESSIVE (50%) PROGRESSIVE (50%) AMBITIOUS (90%) AMBITIOUS (90%) THIS LEVEL OF INVESTMENT COULD: An additional annual per capita investment of (US$) A total additional investment of (US$) 0.84 1.33 75 billion million DALYs million DALYs billion people billion people 1.2 trillion 1.3 trillion 2.1 trillion 2.4 trillion 15.8 16.1 120 billion 1.25 1.46 110 130 4.3.1 TOTAL INVESTMENT WHO estimated that ensuring EHC services at the current level of coverage would incur a cost of US$ 120 billion from 2020 to 2030. Compared with “business as usual”, scaling up coverage of the four EHC interventions (H.E.A.R.) to 90% by 2030 would require an additional global investment of nearly US$ 120 billion; scaling up to 50%, an additional US$ 75 billion. The investment required varies considerably across country income groups (Figure 4.4) and WHO regions (Figure 4.5). WORLD REPORT ON HEARING214 Figure 4.4 Costs for scale-up scenarios, 2020–2030, by country income group Ambitious (90%) Progressive (50%) Low-income Low-income 0 0 20 000 10 10 000 40 000 20 40 30 000 60 000 30 50 50 000 80 000 60 70 000 90 000 17 472 8.1 84 130 46.8 83 194 50.9 69 275 42.7 53 911 27.1 47 064 23.9 12 888 6.1 65 705 37.3 Cost in million US$ DALYs averted (in million US$) Lower-middle-income Lower-middle-income Upper-middle-income Upper-middle-income High-income High-income Ambitious (90%) Progressive (50%) c Figure 4.5 Costs for scale-up scenarios, 2020–2030, by WHO regionFigure 4.5 Costs for scale-up scenarios, 2020–2030 , by WHO region 77 91252 10012 04129 80733 24633 639 28 927 24 622 25 415 9 431 41 227 65 258 Western Pacific South-East Asia Eastern MediterraneanEuropeanAfricanAmericas Ambitious (90%) Progressive (50%) Note: This illustration represents WHO regions, not country boundaries. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 215 Annually, US$ 1.33 per capita additional investment (over and above the current levels of expenditure) is needed to ensure that 90% of populations have access to services, while US$ 0.84 per capita could achieve 50% coverage. The investment required ranges from US$ 0.53 to more than US$ 1.63 per-capita in different regions of the world, with most per capita investment needed in the African, Western Pacific and South-East Asia regions (Figure 4.6). In the initial years, investment need increases, before levelling off and then decreasing as growing numbers of people have access to EHC services (Figure 4.7). Figure 4.6 Per capita annual investment for scale-up scenarios, 2020–2030, by WHO region Figure 4.6 Per capita annual investment for scale-up scenarios, 2020–2030, by WHO region 1.59 1.00 1.32 0.86 0.83 0.53 1.12 0.69 1.63 1.01 1.06 0.66 Western Pacific South-East Asia Eastern MediterraneanEuropeanAfricanAmericas Ambitious (90%) Progressive (50%) Note: This illustration represents WHO regions, not country boundaries. 4.3.2 HEALTH IMPACT With more than 130 million DALYs averted during 10 years, the health gains of EHC investment translates into a monetary value of over US$ 1.3 trillion for the same time period. As anticipated, higher population coverage will avert a greater number of DALYs across all income groups (Figure 4.8) and WHO regions (Figure 4.9). Annually, US$ 1.33 per capita additional investment is required to scale up ear and hearing care globally to 90% by 2030. WORLD REPORT ON HEARING216 Figure 4.7 Annual global costs for scale-up scenarios, 2020–2030 Figure 4.7 Annual global costs for scale-up scenarios, 2020–2030 (in million US$) 202920282027 20302024 202620232022 20252020 2021 Ambitious (80%)Progressive (50%)Business-as-usualCost in million US$ 14.5 18.3 16.3 22.6 26.1 26.9 25.8 23.6 21.7 20.1 19.1 18.5 15.7 8.3 18.2 15.1 7.9 16.4 8.6 17.3 9.0 18.1 9.5 18.8 10.1 19.6 10.8 19.8 11.8 19.5 13 0 10 20 30 Figure 4.8 Number of DALYs averted for scale-up scenarios, 2020–2030, by country income group Ambitious (90%) Progressive (50%) Low-income Low-income 0 0 20 000 10 10 000 40 000 20 40 30 000 60 000 30 50 50 000 80 000 60 70 000 90 000 17 472 8.1 84 130 46.8 83 194 50.9 69 275 42.7 53 911 27.1 47 064 23.9 12 888 6.1 65 705 37.3 Cost in million US$ DALYs averted (in million US$) Lower-middle-income Lower-middle-income Upper-middle-income Upper-middle-income High-income High-income Ambitious (90%) Progressive (50%) c SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 217 Figure 4.9 Number of DALYs averted for scale-up scenarios, 2020–2030, by WHO region (in million US$) 43.9 37 32.2 25.9 6.1 4.9 17.7 15.3 14.3 10.9 18.7 16.1 Western Pacific South-East Asia Eastern MediterraneanEuropeanAfricanAmericas Figure 4.9 Number of DALYs averted for scale-up scenarios, 2020–2030, by WHO region Ambitious (90%) Progressive (50%) Note: This illustration represents WHO regions, not country boundaries. When translated into monetary values, the health gains over 10 years would thus equal US$ 1.2 trillion when the scale-up targets 50% coverage; and US$ 1.3 trillion dollars when 90% coverage is attained. The breakdowns for country income groups are depicted in Figure 4.10 and for WHO regions in Figure 4.11. The monetary benefits are seen to be highest in high-income countries primarily due to the higher per capita GDP (gross domestic product) in these countries. WORLD REPORT ON HEARING218 Figure 4.10 Monetized DALY benefits for scale-up scenarios, 2020–2030, by country income group WORLD REPORT ON HEARING Ambitious (90%) Progressive (50%) Ambitious (90%) Progressive (50%) Low-income Low-income 0 0 400 000 200 000 100 500 300 700 200 600 400 800 800 000 600 000 1 000 000 1 400 000 1 200 000 1 600 000 8108 8.1 222 393 147 843 738 404.1 720 277 1 194 544 1 351 757 481.2 595 674.7 6345 6.1 182 868 183.8 Productivity gains (in million US$) Monetized DALY benefi ts (in million US$) Lower-middle-income Lower-middle-income Upper-middle-income Upper-middle-income High-income High-income d Figure 4.11 Monetized DALY benefits for scale-up scenarios, 2020–2030, by WHO region (in million US$) 393.9 462.1 114.6 141.9 28.5 34.9 271.2 311.3 26.0 33.6 317.9 364.0 Western Pacific South-East Asia Eastern MediterraneanEuropeanAfricanAmericas Figure 4.11 M etized DALY benefits for scale-up scenarios, 2020–2030, by WHO region Ambitious (90%) Progressive (50%) Note: This illustration represents WHO regions, not country boundaries. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 219 4.3.3 NUMBER OF PEOPLE TO BENEFIT Scaling up ear and hearing care has the potential to benefit nearly 1.5 billion people over 10 years, through having their ear and hearing problems addressed. The numbers are distributed proportionately in all regions, according to their total need (Figure 4.12). Figure 4.12 Number of people to benefit through scale-up scenarios, 2020–2030, by WHO region, in millions 513 446 358 299 65 54 188 168 127 102 209 184 Western Pacific South-East Asia Eastern MediterraneanEuropeanAfricanAmericas Figure 4.12 Number of people to benefit through scale-up scenarios, 2020–2030, by WHO region Ambitious (90%) Progressive (50%) Note: This illustration represents WHO regions, not country boundaries. 4.3.4 PRODUCTIVITY GAINS Investing in ear and hearing care would improve employment opportunities, and thus enhance productivity significantly within countries to the value of over US$ 2 trillion within a 10-year period. While the estimation of productivity gains considers a number of parameters including employment rates (6), the overall gains are in line with the gross domestic product of the different regions. Hence, a higher economic value of productivity benefits is estimated in high-income parts of the world and are proportionate to the level of scale-up (Figure 4.13 and Figure 4.14). Over 10 years, nearly 1.5 billion people can be benefitted through scaling up ear and hearing care. WORLD REPORT ON HEARING220 Figure 4.13 Productivity gains for scale-up scenarios, by country income group WORLD REPORT ON HEARING Ambitious (90%) Progressive (50%) Ambitious (90%) Progressive (50%) Low-income Low-income 0 0 400 000 200 000 100 500 300 700 200 600 400 800 800 000 600 000 1 000 000 1 400 000 1 200 000 1 600 000 8108 8.1 222 393 147 843 738 404.1 720 277 1 194 544 1 351 757 481.2 595 674.7 6345 6.1 182 868 183.8 Productivity gains (in million US$) Monetized DALY benefi ts (in million US$) Lower-middle-income Lower-middle-income Upper-middle-income Upper-middle-income High-income High-income d Figure 4.14 Productivity gains for scale-up scenarios, 2020–2030, by WHO region (in million US$)Figure 4.14 Productivity gains for scale-up scenarios, 2020–2030, by WHO region 864 680185 76845 248608 53727 440694 324 610 539 22 083 533 241 37 662 153 856 746 653 Western Pacific South-East Asia Eastern MediterraneanEuropeanAfricanAmericas Ambitious (90%) Progressive (50%) Note: This illustration represents WHO regions, not country boundaries. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 221 4.3.5 RETURN ON INVESTMENT As a result of the significant benefits and productivity gains that can be expected from effective scaling up of EHC services globally, the resources invested into this area of health undoubtedly would be a sound investment. Overall, it is estimated that the timely identification and management of ear and hearing problems through integration of H.E.A.R. interventions into health systems will, during the next 10 years, result in a return of around US$ 16 for every dollar invested, which compares closely with the two scale-up scenarios proposed (i.e. 50% or 90%) (Figure 4.15). Even though the analysis shows an excellent return for investment into ear and hearing care, it is likely that this is an underestimation since not all benefits can be quantified or monetized. Figure 4.15 The net dollar return for every dollar invested for scale-up scenarios, by WHO region (in US$) 17.03 17.48 6.29 6.50 6.66 7.02 30.86 31.66 1.83 1.95 31.46 32.10 Ambitious (90%) Progressive (50%) Western Pacific South-East Asia Eastern MediterraneanEuropeanAfricanAmericas Figure 4.15 Number of people to benefit through scale-up scenarios, 2020–2030, by WHO region Note: This illustration represents WHO regions, not country boundaries. Scaling up ear and hearing care will improve productivity, with gains of more than 2 trillion US dollars over 10 years. WORLD REPORT ON HEARING222 4.3.6 MAKING INVESTMENTS All countries must engage in an evidence-based policy dialogue to establish policies and finalize investments for integrating ear and hearing care into national health systems. This should be achieved through a systematic approach for prioritization based on the specific health needs of the country’s population and should consider cost–effectiveness, equity, and financial risk protection. WHO tools for situation analysis (7), and planning for EHC services (8), provide useful guidance on developing a strategic policy. Use of the WHO OneHealth costing tool (4) can provide effective support and guidance to the country planning process. Strategies identified through the prioritization and planning exercise must be integrated into a country’s health system following a people-centred approach, as part of UHC implementation. In parallel, health system capacity must be strengthened, so that countries can deliver on their national aspirations for ear and hearing care and benefit from their investments in this field. While the long-term aim is for all countries to achieve the ambitious scenario of 90% or higher coverage, a 50% overall coverage may be more realistic for some. Based on these outcomes as well other relevant considerations, countries must determine their national scale-up targets, and aim to align them with the global targets, as outlined below. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 223 Target: a 20% relative increase in effective coverage of H.E.A.R. interventions by 2030. 4.4 SCALING UP EAR AND HEARING CARE: GLOBAL TARGETS AND TRACER INDICATORS Given the importance and benefits of investing in a systematic scale-up of EHC services, this report outlines the global target that countries must aim to achieve. Building on what has been learnt through data and information provided in this report, countries must strive to achieve a minimum of a 20% relative increase28 in the effective coverage of EHC services from 2021 to 2030. To monitor their progress towards this target, countries have to integrate and systematically assess a comprehensive set of indicators29 within their national health systems (as detailed in section 4.6). This is fundamental to the effective provision of EHC services, and for tracking the performance of health systems over time. At the global level, however, three tracer indicators were identified that can serve as a reasonable proxy for measuring the growth of EHC services during the next 10 years. Identification was based on considerations that the three indicators should: • cover different sections of the population across the life course; • be based on effective interventions; • focus on impact or health outcomes in the population groups assessed; • have clearly outlined steps for improving their coverage; and • be suitable for measurement at a five-year gap. 4.4.1 TRACER INDICATORS FOR MONITORING PROGRESS IN EAR AND HEARING CARE The three EHC indicators for global surveillance are: 1. Effective coverage30 of newborn hearing screening services within the population: defined as the proportion of infants with hearing loss in a defined population who have received suitable interventions within the first six months of life to address their hearing loss. 28 Relative increase in coverage refers to the upscaling of services in proportion to the currently existing baseline service coverage. 29 WHO EHC: indicators for monitoring provision of services https://apps.who.int/iris/handle/10665/324936?show=full 30 Effectiveness is a measure of the degree to which evidence-based health services achieve desirable outcomes. It implies that people who need health services obtain them in a timely manner and at a level of quality necessary to obtain the desired effect and potential health gains. See: https://apps.who.int/iris/bitstream/handle/10665/174536/9789241564977_eng.pdf?sequence=1. WORLD REPORT ON HEARING224 2. Prevalence of chronic ear disease and unaddressed hearing loss in schoolchildren: defined as the percentage of children of primary school age who have chronic otitis media or hearing loss for which they are not receiving rehabilitation. 3. Effective coverage of hearing technology (e.g. hearing aids and implants) use among adults with hearing loss: defined as the number of adults in a defined population having a perceived benefit through the use of hearing technology as a proportion of those with hearing loss (moderate or higher grade). Details of the proposed indicators and data points needed in their estimation are summarized in WEB ANNEX B. 4.4.2 GLOBAL AND NATIONAL TARGETS In consideration of the tracer indicators defined above, the targets for expanding coverage of EHC services are: 1. A 20% relative increase in the effective coverage of newborn hearing screening services, by 2030. – Countries with effective coverage rates below 50% should strive for a minimum of 50% effective coverage. – Countries with effective coverage rates of 50–80%, should strive for a 20% relative increase in effective coverage. – Countries with effective coverage rates currently above 80% should strive for universal coverage. – Countries with population groups covered by newborn hearing screening services should ensure a coverage of 95% or above. 2. A 20% relative reduction in the prevalence of chronic ear diseases and unaddressed hearing loss in school-age children, aged 5–9 years. 3. A 20% relative increase in the effective coverage of adults with hearing loss that use hearing technology (i.e. hearing aids and implants), by 2030. – Countries with effective coverage rates below 50% should strive for a minimum of 50% effective coverage. – Countries with effective coverage rates of 50–80% should strive for a 20% relative increase in effective coverage. – Countries with effective coverage rates currently above 80% should strive for universal coverage. WHO proposes monitoring and reporting on these indicators once every five years, as a means of assessing progress towards the goal of making ear and hearing care accessible for all people. Countries should gather and report on data relevant to the indicators, which would greatly facilitate the study of global trends in ear and SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 225 hearing care during the coming years. While the consistent assessment of, and reporting on, these tracer indicators is key to global monitoring, the importance of measuring, as part of a comprehensive set of EHC indicators integrated within national health information systems, cannot be overstated. © S he lly C ha dh a School screening in India helps ensure that children with ear diseases or hearing loss can be identified early WORLD REPORT ON HEARING226 The power of existing interventions must be matched by the power of health systems to deliver them to those in greatest need, in a comprehensive way, and on an adequate scale. (9) 4.5 PEOPLE-CENTRED EAR AND HEARING CARE DELIVERED THROUGH A STRENGTHENED HEALTH SYSTEM The path to universal health coverage is through a strong and resilient people- centred health system with primary care as its foundation. This approach requires a shift in thinking, from health systems designed around health conditions or clinical services, towards integrated people-centred health services. Integrated health services provide people with a continuum of services covering health promotion, disease prevention, diagnosis, treatment, disease management, rehabilitation and palliative care. Services are coordinated across different levels and sites of care within and beyond the health sector, and according to their needs at all stages of life. The vision for IPC-EHC services is outlined below in Box 4.2; hypothetical examples of how such services could benefit individuals with hearing loss are provided in Box 4.3. Being “people-centred” means that people in communities are viewed as partners in shaping both health policy and the services to be delivered through health systems. People-centred care means services are organized around the comprehensive needs of individuals, families and communities, rather than individual diseases. It also means that people have the required awareness, education and support to make decisions. Such an approach can ensure that health providers have greater satisfaction within a supportive work environment. Additionally, it involves health systems being responsive to people’s needs, including those for ear and hearing care across the life course; and that the required H.E.A.R.I.N.G. interventions are delivered in an integrated manner and without causing financial hardships to those needing care. This integrated, life-course approach is at the core of EHC provision recommended by this report. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 227 Box 4.2 The WHO vision of IPC-EHC services All people to have equal access to quality EHC services (as part of health services) that meet their needs across their life course; respect social preferences; are coordinated across the continuum of care; are comprehensive, safe, effective, timely, efficient and acceptable; and that all carers are motivated, skilled, and operate in a supportive environment. The key implementation principles of an integrated people-centred approach are that it should be: • country-led • equity-focused • participatory • evidence-based • results-oriented • ethics-based • sustainable • systems-strengthening. Based on the integrated health services framework, IPC-EHC involves: • Empowering individuals and communities through knowledge and accessible information so that they are aware of their ear and hearing care needs. This ensures that the critical barrier of knowledge in addressing hearing loss is overcome to ensure greater acceptance and use of the services which are offered. • Strengthening governance and accountability through a participatory approach so that a shared vision can be achieved by all stakeholders. This means that EHC needs can be identified by policy-makers and community stakeholders in partnership, so that the most pressing needs are prioritized. • Reorienting the model of care so that primary care and community-based quality EHC services can be prioritized so that people have access to relevant EHC interventions close to their homes. At the same time, they can access high quality clinical services at secondary and tertiary level facilities, coordinated through efficient referral pathways (Figure 4.16). WORLD REPORT ON HEARING228 Figure 4.16 Reorienting the model of care Figure 4.16 Reorienting the model of care Secondary level clinical services Teriary level highly specialized services Community Primary level health services Referral pathwayIn fo rm at io n flo w • Coordinating services within and across sectors by building linkages across various services and programmes within the health sector, so that individuals and families can have continuity of ear and hearing care across their life course. Coordination is also required across other (non-health) sectors including, among others, social services, finance, education, labour, housing, the private sector and law enforcement. • Creating an enabling environment so that all blocks of the health systems work in such a manner that the delivery of services, as conceptualized, is possible. This has relevance to all parts of the health system including leadership; health information systems; access to high-quality, and safe, clinical services; workforce reorientation; regulatory frameworks; and finance reforms. These factors are discussed below (in section 4.3.2), as part of the health system enablers for the provision of ear and hearing care. A child receives ear care at the community level © H ea r t he W or ld F ou nd at io n SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 229 Box 4.3 The vision of IPC-EHC WHAT WOULD IPC-EHC MEAN FOR LELA?* (*a hypothetical example) Lela is a bright young girl living in a rural district in a tropical middle-income country who has developed pain and discharge in her right ear and is unable to hear well from that side. She requires medical attention to cure her ear problem. What would IPC-EHC mean for her? Empowered individuals and communities: Many children in the village suffer with discharging ear and associated hearing loss. So common is the condition, that the villagers used to consider this “normal” and did not pay much attention to it, thinking that the child would outgrow it with time. But now things have changed. People have clear and useful information about common health problems faced in their area. They understand that many children have hearing loss due to discharging ear and that the condition further affects a child’s education and school performance. They also realize that some children have had serious problems as a result of ear infections, which could have been avoided. Engaging with their local governments, ear infections are now acknowledged as an important health issue in this community. So, Lela’s parents understand that her ear discharge indicates a disease that requires attention and that they can receive advice and help from local health workers. Strong governance: Due to the high prevalence and impact of ear diseases, the government, following dialogue with people of the community, adopted a policy for the provision of integrated ear and hearing care services. Implementation focused on raising awareness on ear and hearing problems, and the provision of EHC services across all levels of care. This makes it possible for Lela to receive the services she requires and for her parents to afford these. Reoriented model of care: As a result of government policy, health-care providers, at community and primary health care (PHC) levels, have been trained to identify and address common ear problems. Now, when Lela develops pain and discharge, the community health worker detects the problem during a regular family visit. She advises Lela’s parents on how to clean the ear and keep it dry, stressing the importance of doing so. She also directs them to the (PHC) centre where a doctor examines Lela’s ear and gives her medicines to treat the infection. Since the PHC is close to their village, the parents are able to regularly take Lela back for follow up. When the infection recurs after a few months, the doctor refers Lela to the secondary level district hospital where specialized ENT services are available. With a referral slip and guidance received at the PHC, Lela’s parents are able to make the overnight trip to see an ENT specialist. Lela is asked to come back after a few weeks and surgery is performed on her ear. This information is communicated back to the doctor at the PHC and the community health worker WORLD REPORT ON HEARING230 Services coordinated across sectors: At the request of the doctor, the community health worker informs Lela’s school of her ear condition, ensuring that her teachers make the required adjustments in the classroom so that she can hear them well. An enabled environment: Lela’s parents are able to afford the cost of the treatments and travel to the city due to the government’s policies which ensure financial protection for EHC services, through the national health insurance scheme. Moreover, there is clarity across all levels of care regarding what needs to be done. Health workers are available and well trained in recognizing and addressing common ear and hearing problems. Due to the government’s well-implemented IPC-EHC approach, Lela can access the ear and hearing care she needs. Her ear is now healing well and she continues to go to the PHC for follow up. The community health worker also guides Lela’a parents on good ear and hearing care practices to make sure that Lela’s sister and brother do not develop ear problems and that all family members learn to value and protect their hearing. WHAT WOULD IPC-EHC MEAN FOR ARI AND MIA?* (*a hypothetical example) Ari lives with his family in a town that houses a major steel manufacturing plant. Like most people of the town, Ari works in this factory, as does his daughter Mia. The environment they work in is very noisy. During the past few years Ari has been experiencing a persistent ringing in his ears and has noticed that he often doesn’t hear what his family are saying. He needs care for his ear and hearing problem. What does IPC-EHC mean for Ari? Empowered individuals and communities: Many of the people in the town, especially those employed in the manufacturing of steel, are exposed regularly to loud levels of noise as well as ototoxic chemicals. Although the factory provides hearing protection to its employees, most of them used to avoid using this as they found it uncomfortable. As a result many have developed hearing loss. In the earlier days, most people just blamed it on “growing old” and made no connection between their hearing loss and their work-environment. When policy- makers and community stakeholders from the township held joint discussions to frame public health services here, the outcome was an understanding within the community members of the risk of noise exposure to their health and hearing. The policy-makers also understood that this was one of the important health challenges needing to be addressed within this community. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 231 Strong governance: Following this, a comprehensive occupational hearing conservation programme was developed in consultation with experts and with the participation of the private sector company that runs the steel plant. Its implementation is closely monitored by the government to make sure that workers are aware of the need and means for hearing protection against noise and the ototoxic chemicals they are using; have access to high-quality, comfortable and effective hearing protectors; routinely have training and information sessions that reaffirm the need for hearing protection and the correct ways of using protective gear; are rotated regularly to non-noisy areas to reduce the risk of hearing loss; have access to noise-free rest areas; have regular, well-documented hearing examinations; and are referred for expert opinion when needed. Reoriented model of care: Upon routine hearing examination at the plant, the nurse realizes that Ari has severe hearing loss in both ears. She immediately guides him to the medical centre in the town where specialized ear and hearing care services are available. He is advised to use a hearing aid and is able to be fitted with a suitable, high-quality hearing aid at the same centre. He has to return from time to time for the hearing aid to be checked and to learn how to use it well. Services coordinated across sectors: The government is working with the steel company to make sure that a comprehensive hearing conservation programme is implemented at the factory and that those who develop hearing loss are able to get high-quality hearing aids and associated services in the health-care facilities close by. An enabled environment: Clear, culturally-appropriate information in the local language is being provided to families living in the township, so that they can be more informed and aware of why hearing loss develops; the early signs; and how the use of hearing devices can help those with hearing loss. Due to the government-mandated regular hearing screening, hearing loss is identified early in , and they can get the services they need without undue out-of-pocket expenses. As a result of these actions for IPC-EHC, Ari is able to participate in family conversations again. He encourages his daughter Mia to use hearing protection regularly and is very hopeful that she will not face the tinnitus and hearing problems that he has had. More than anything, the stigma associated with hearing loss is dissipating in the town, and people are starting to accept both the importance of protecting their hearing, and the need for addressing any hearing loss at the earliest stage. WORLD REPORT ON HEARING232 Integrated people-centred ear and hearing care implemented through a strengthened health system can overcome the challenges faced. 4.6 HEALTH SYSTEMS ENABLERS FOR INTEGRATED PEOPLE-CENTRED EAR AND HEARING CARE To integrate H.E.A.R.I.N.G. interventions into health systems, countries must assess and strengthen the capacity of their health systems to deliver these in an equitable manner across the life course. To achieve this, WHO envisages health systems comprising six building blocks: leadership and governance; health services; health workforce; medical products and technologies; health information; and financing. The six blocks of this system are shown in Figure 4.17 and described below in further detail. The “health services” block is central as it represents clinical and other services that are to be delivered at all levels of ear and hearing care across a person’s life course. The key interventions relating to this are reflected in the H.E.A.R.I.N.G. package. Equipping the system with the optimal resources, including human resources, information and communication technologies, medicines and medical devices, is central to facilitating the provision of services. This section provides information on those health system enablers that must be considered and developed during the planning phase for EHC service provision. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 233 Figure 4.17 Strategies to strengthen health system for IPC-EHC Policy Oversight Coalition-building Regulations Education Training Task sharing Telemedicine Social protection Private sector engagement Needs assessment Targets Indicators Monitoring Standards Procurement Quality assurance Patient safety EAR AND HEARING CARE SERVICES Fi na nc in g Leadership W orkforce Prod uc ts Infomation 4.6.1 THE HEALTH SYSTEM BUILDING BLOCKS LEADERSHIP AND GOVERNANCE Leadership and governance is, perhaps, the most critical building block of any health system. It reflects the role of government in health and its relationship to other stakeholders or actors whose activities impact people’s health. Furthermore, leadership and governance involves ensuring that a strategic policy framework exists and is combined with effective oversight, coalition-building, regulations, attention to health system-design, and accountability (9, 10). The main focus of governance for EHC provision is on guiding the health system in order to promote access to IPC-EHC services, and safeguard the interest of the population at large. Such leadership and policy-planning are key to ensure: • Integration of the H.E.A.R.I.N.G. package of EHC services into the national health plans as part of the health system response to ear and hearing care needs. This requires coordination across various governmental sectors, and with nongovernmental partners, to ensure that all components of the package are carefully considered and systematically addressed as well as other needs identified, if relevant. WORLD REPORT ON HEARING234 • Availability of EHC services at all levels of health- care service provision (community, primary, secondary and tertiary) across the life course. For example, EHC services must be part of child development plans, adolescent health, school health, healthy ageing, occupational health services etc. In addition, to make sure that these services are accessible, they must be integrated into services provided at the primary level. • Alleviation of financial hardships posed by ear and hearing problems and social protection (as outlined in section 3.4.5). • The backing of proposed EHC interventions with appropriate evidence-based policies and regulations. The key functions of the health system for such integration include: (9, 10) • Policy guidance and planning: in order to ensure equitable access to EHC services, formulating suitable strategies and technical policies is essential. Such policies must also identify the roles of public, private and voluntary sectors and the role of civil society. • Intelligence and oversight: generation, analysis and use of intelligence on trends in prevalence of hearing loss and ear diseases; improvements in EHC workforce availability, effective coverage of services and health outcomes. • Collaboration and coalition-building across different government sectors (see Box 4.4), and with actors outside government, including civil society and private sector for improving access to EHC services in all sections of the population. • Regulations, e.g. for reduction of noise; expanding scope of practice of health workforce; enhancing accessibility of hearing technologies; including their implementation and enforcement. Policy development and planning can ensure that EHC services are integrated across all service delivery platforms across the life-course. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 235 Box 4.4 Government sectors engaged in ear and hearing care • Ministry of Health (lead agency) • Ministry of Social Welfare or Justice and Empowerment • Ministry of Education • Ministry of Labour • Ministry of Environment • Ministry of Finance or Planning • Ministry of Works • Provincial or state health regulators (if the system is decentralized) The process of planning and monitoring EHC services at the country level can be supported by the use of available WHO tools. Application of the WHO EHC situation analysis tool (7) at the start of the planning process is a way of gaining a holistic view, not only of the problems and needs, but also of the health system and human resource capacity. Situation analysis and the planning process must be led by governments through a collaborative and transparent approach. Policies developed must be in line with identified priorities and ensure the provision of quality ear and hearing care through the health system. These must address key challenges and be developed collaboratively with the relevant ministries and government agencies. Policies should foster an active collaboration with nonstate actors for effective implementation and monitoring. Available WHO tools to support the process of policy development are summarized in Box 4.5. WORLD REPORT ON HEARING236 Box 4.5 WHO tools for the planning of EHC services As part of implementing resolution WHA70.13, WHO launched a set of tools to support planning for the provision of integrated, quality EHC services. These tools include: 1. EHC situation analysis tool which provides a framework for collecting information on a country’s EHC needs; a country’s health system capacity for the provision of services required; and a profile of stakeholders that can contribute to the planning process. 2. Manual for the planning and monitoring of national strategies for EHC which provides detailed guidance on the process of policy development from the pre-planning phase through priority-setting, determining activities and resource requirements, to implementation, monitoring and evaluation. It also outlines the responsibilities of different entities engaged in the process. 3. Indicators for the monitoring provision of EHC services which lists a set of six core and supplementary indicators, each tailored to one of WHO’s six health system blocks to enable their integration within the country’s health system framework. SUSTAINABLE FINANCING AND SOCIAL PROTECTION A good health financing system harnesses adequate funds for people to use the required services – including EHC services – and be protected from financial catastrophe or impoverishment due to having to pay for them. A robust health financing system must be founded on three key pillars: (i) the collection of revenues from households, companies or external agencies; (ii) the pooling of prepaid revenues in ways that allow risks to be shared; and (iii) the purchasing of equipment, medicines, services etc, or the process by which interventions are selected and services are financed and providers paid (Figure 4.18). SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 237 Figure 4.18 Pillars of a robust financing system WORLD REPORT ON HEARINGb Priority research areas listed Internal WHO review Brainstorming session with cross-sectoral stakeholder group to defi ne research priorities Discussion with experts to draft research themes Review of literature and identifi cation of evidence-gaps A ROBUST HEALTH FINANCING SYSTEM MUST BE FOUNDED ON THREE KEY PILLARS The collection of revenues from households, companies or external agencies The pooling of prepaid revenues in ways that allow risks to be shared The purchasing of equipment, medicines, services etc, or the process by which interventions are selected and services are fi nanced and providers paid 1 2 3 As with other health services, there is no single template for successful financing of EHC services across the life course; nonetheless principles and approaches that have proved effective for strategic purchasing (11) include: (9, 12) • Minimizing out-of-pocket payments through a prepayment system involving pooling of financial risks across population groups. Taxation and health insurance are forms of prepayment. • Ensuring social protection, especially for those of poor financial means and the vulnerable. • Strengthening financial and other relationships with the private sector. HEALTH WORKFORCE Health systems can only function with the availability and equitable distribution of a health workforce that is competent, motivated and empowered to deliver quality care, and appropriate to the sociocultural context of the population served. As with any other public health domain, to ensure the effective provision of quality services for ear and hearing care, it is essential to: optimize performance, quality and impact of the health workforce through evidence-informed policies; align investment in human resources for health with the current and future needs of the population and of health systems; build institutional ap city for workforce development; and strengthen data on health workforce for monitoring and ensuring accountability (13). Countries at all levels of socioeconomic development face, to varying degrees, challenges in the education, deployment, retention, and performance of their health WORLD REPORT ON HEARING238 workforce. Without addressing these challenges systematically, health priorities and targets will remain as aspirational goals only. This is no different for ear and hearing care than for other health conditions and initiatives. The variable distribution of professionals, such as ENT specialists, audiologists, speech therapists and teachers of the deaf has been described in Section 3. Addressing the gaps in these cadres requires careful and evidence-based workforce planning so that IPC-EHC can be delivered across the life course. Several factors need to be considered to ensure opportunities for education and training, increased retention of the health workforce, and the improved distribution and performance of existing health workers. These include: (9) • increasing the numbers and skills of the EHC health workforce through scaling up and financing education programmes in a sustainable manner; • designing training programmes for other (non- EHC) cadres of health workers that facilitate integration of ear and hearing care across services and at different stages of the life course through task-sharing; • using telemedicine to improve access, especially in remote and underserved areas; and • organizing health workers to deliver EHC services at different levels of care. This requires accompanying policies that support such educational programmes and the promotion of task-sharing through an expanded scope of practice of (non-EHC) health workforce and accompanying reimbursement. As outlined in Section 3, task-sharing, when implemented as part of a broader workforce strategy, can improve access to EHC services, reduce health- care disparities, increase efficiency, and improve access to, and quality of, care across the life course (14–17). Such workforce- related solutions are facilitated by innovative technology and telemedicine services to promote access to quality services. As with other health services, a “well- performing” health workforce that is available, competent, responsive and productive, is at the centre of integrated person-centred ear and hearing care. This includes all those engaged in actions to protect and improve health, including health service providers, health management and support workers in private and public sectors (9). SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 239 HEALTH INFORMATION Sound and reliable information gained through a robust health information system is the foundation of decision-making across all health system building blocks. A health information system provides information on several factors: • key health determinants (socioeconomic, environmental, behavioural, and genetic factors); • the contextual environments within which the health system operates; • inputs into the health system and related processes including policies, health infrastructure and equipment, costs, and human and financial resources; • performance or outputs of the health system such as availability, accessibility, quality and use of health services and financial risk protection; • health outcomes (mortality, morbidity, disease outbreaks, health status, disability, well-being); and • health inequities. Data and information relating to these factors are commonly gathered at the individual, health facility, and population levels (18), and are necessary for both the planning and monitoring of IPC-EHC services provided across the life course. Planning and monitoring must aim to: (19) • Determine population needs and priorities at different stages of the life course by estimating prevalence and causes of hearing loss in all ages, and studying its trends over time. The WHO Ear and hearing: survey handbook provides a standardized tool for this purpose (20). • Assess the health systems’ capacity for provision of required clinical services; identify gaps and monitor its performance. The WHO Ear and hearing care: situation analysis tool is useful in this respect (7). • Set realistic, relevant, and time-bound targets; and identify relevant indicators to assess the effective coverage of services. WHO-set global targets are provided in section 4.4.2 and should be included in national targets, if relevant. National targets need to be determined according to identified country priorities for ear and hearing care, and actions planned to address these. The different stages of the approach to setting targets and indicators as described above are shown in Figure 4.19. • Integrate indicators within the national health information systems and track progress through the use of standardized monitoring tools. • Report progress towards the targets and demonstrate impact of the strategy; identify gaps in strategy implementation so that these can be bridged and course- correction undertaken. WORLD REPORT ON HEARING240 Figure 4.19 Process for setting targets and indicators on ear and hearing care a Internal WHO review Determine population needs and priorities Integrate EHC indicators into Health Information System Set targets, determine indicators Track progress through standardized tools Report results and impact Listing all interventions required to address hearing loss across the life-course Review of evidence for listed interventions; Discussion with WHO review group Review of evidence with respect to eff ectiveness and cost- eff ectiveness of identifi ed interventions; Return-on-investment (ROI) studies undertaken to assess ROI in diff erent economic settings Expert and stakeholder consultations (3) to fi nalize list of interventions The success of such an approach depends on: (9) a well-functioning health information system that ensures the production, analysis, dissemination and use of reliable and timely health information, including EHC indicators at different levels of the health system; an efficient surveillance system with a consistent application of the developed tools and instruments; and a compilation of the data related to indicators by the office responsible for ear and hearing care in the Ministry of Health and its regular reporting to the National Committee and publication in health reports (19). MEDICAL PRODUCTS, VACCINES AND TECHNOLOGIES A well-functioning health system must ensure equitable access to essential medical products of assured quality, safety, efficacy and cost–effectiveness. These include: (9) • vaccines; • diagnostic equipment for ear examination and hearing assessment; • medicines, e.g. antibiotics and eardrops; • surgical equipment for microscopic and other ear surgeries; and • hearing technologies, e.g. hearing aids, middle ear and cochlear implants. In order to ensure their equitable access and rational use, EHC-related products should be included in government lists of essential medicines, medical devices and assistive technologies, aligned with available WHO lists (21). Technical specifications should be developed, in line with international standards (e.g. the WHO “Preferred profile for hearing aids suitable in low- and middle-income countries”) (22). Materials should be procured reliably to avoid counterfeit and substandard products. Procurement and use of the included products should be monitored to ascertain their quality, effectiveness and safety. Health system requirements for ensuring equitable access to assistive devices and products are summarized in Figure 4.20. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 241 Figure 4.20 Health systems requirements for equitable access to devices and productsFigure 4.20 Health systems requirements for equitable access to devices and products National policies, standards, guidelines and regulations Information on prices, trade agreements along with the capacity to negotiate prices Reliable manufacturing practices and quality assessment Efficient systems for procurement, supply, storage and distribution Guidelines that maximize patient safety through the rational use of required medicines, technologies and equipment Wherever possible, governments should encourage innovations and local adaptations of successful interventions, such as hearing technologies and diagnostic or surgical equipment. However, such innovations and adaptations must undergo rigorous testing to ensure compliance with the required internationally accepted quality and safety standards. 4.6.2 RESEARCH FOR EVIDENCE-BASED INTEGRATED PEOPLE-CENTRED EAR AND HEARING CARE In addition to the points mentioned above, it is important to focus attention on relevant, impact-orientated research. Sound health policies and policy implementation (23) are founded on research, evidence and information. For this report, gaps in research and evidence were identified, along with priority areas to be targeted. The process for identifying priority areas for EHC research is summarized in Figure 4.21. In the context of promoting IPC-EHC across the life course, research should be targeted towards: (23, 24) • prioritization of EHC needs, particularly in low- and middle-income countries; • building health systems’ capacity for service impact; • norms and standards that support the creation of an enabling environment; • creating knowledge and products that can be adapted to different cultural and socioeconomic settings; • translating quality evidence into affordable health technologies and evidence-informed policies; and • impacting society. Research, evidence and information are the foundation for comprehensive health policies and their implementation. WORLD REPORT ON HEARING242 Figure 4.21 Process followed for identification of priority areas for research in ear and hearing care WORLD REPORT ON HEARINGb Priority research areas listed Internal WHO review Brainstorming session with cross-sectoral stakeholder group to defi ne research priorities Discussion with experts to draft research themes Review of literature and identifi cation of evidence-gaps A ROBUST HEALTH FINANCING SYSTEM MUST BE FOUNDED ON THREE KEY PILLARS The collection of revenues from households, companies or external agencies The pooling of prepaid revenues in ways that allow risks to be shared The purchasing of equipment, medicines, services etc, or the process by which interventions are selected and services are fi nanced and providers paid 1 2 3 IDENTIFIED PRIORITY AREAS FOR RESEARCH IN EAR AND HEARING CARE Based on the gaps in evidence identified during the development of this report, along with inputs from experts and stakeholders actively engaged in service provision or advocacy within countries, the following areas were identified as a priority in the development and implementation of IPC-EHC: 1. Prevalence and causes of hearing loss assessed through population-based studies following a consistent methodology. 2. Study of barriers to accessing ear and hearing care services in different economic and cultural settings, along with strategies to overcome these barriers. 3. Ear and hearing care needs, barriers and approaches for improving access in vulnerable populations, including indigenous populations. 4. Hidden hearing loss and other effects of sound on human ears. 5. Approaches and tools for changing listening behaviours in those most at risk of hearing loss due to unsafe listening practices. 6. Innovative approaches for early identification of hearing loss across the life course, including their effectiveness and cost–effectiveness. Special focus should be on older adults and school-age children. 7. Service-delivery approaches that improve access to hearing rehabilitation including hearing technologies, especially in low- and middle-income countries. 8. Models of task shifting and task-sharing across cadres, including their effectiveness in improving access and cost–effectiveness of EHC services. 9. Training modalities for health workers and paraprofessionals on primary ear and hearing care. 10. Telehealth, m-health and e-health models for EHC service provision in underserved populations. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 243 11. High-quality, cost–effective, hearing technologies that match country needs and can be manufactured locally, especially self-fitting and other similar technologies. 12. High-quality, cost–effective innovative diagnostic tools, hearing aids and implants. 13. Health financing models for improving access to hearing technologies and services. 14. Impact of policies and regulations in: improving access to technologies and services; increasing safe listening practices; preventing hearing loss through noise control, and ototoxic medicine/chemical regulation. 15. Effectiveness and cost–effectiveness of public health strategies such as: – standards and norms for safe listening devices and safe listening venues; – awareness campaigns for prevention of ear diseases and hearing loss; – noise reduction in occupational, recreational or environmental settings; and – immunization against vaccine-preventable causes of hearing loss. 16. New vaccines (e.g. CMV) and therapeutics for the prevention and management of hearing loss and models for their public health application. 17. Approaches for, and impact of, increased availability of sign language translation, captioning services and assistive technologies (e.g. loop systems). The above list of priority areas for EHC research is not exhaustive: it focuses mainly on the public health aspects of ear and hearing care which relate to the H.E.A.R.I.N.G. interventions and health system enablers, and does not detail clinical and therapeutic areas of research. Research on novel therapeutics and clinical aspects is acknowledged as essential to ensure the availability of effective preventative, medical, surgical and rehabilitative solutions for ear diseases and hearing loss. However, research into cost–effectiveness and relevant service delivery models is equally important so that their intended benefits on public health can be realized. CASE STUDY Japan prioritizes research for hearing care Japan has long prioritized care of older adults as an essential public health strategy; the country has the highest proportion of older adults in the world and has often been termed a “super-ageing” society (25). The high incidence of hearing loss and its relationship with cognitive decline has prompted Japan to research this association scientifically and to share their knowledge with the rest of the world. At the same time, recognizing that noise exposure and unsafe listening is a cause for hearing loss, Japan has focused on the issue of safe listening through the engagement of its scientists in the development of the evidence-based WHO-ITU global standard for safe listening. Moreover, the Japanese Telecommunication Technology Commission (TTC, a Standardization body for information and communication technology in Japan) has adopted the WHO-ITU global standard as a national standard. WORLD REPORT ON HEARING244 Integrated people-centred ear and hearing care must be available and accessible to all, where and when needed, without causing financial hardships. 4.7 CONCLUSION AND RECOMMENDATIONS: MAKING EAR AND HEARING CARE ACCESSIBLE FOR ALL Worldwide, over 400 million people experience limitations in their day-to-day lives due to unaddressed hearing loss, while over 1 billion are at risk of this growing threat. Despite its high prevalence and impact, the World report on hearing demonstrates that hearing loss can be prevented and its impact mitigated through timely and effective measures. During the past few decades, the field of ear and hearing care has advanced substantially, with the development of both high-end technology, and innovative service delivery approaches. Despite these developments, the vast majority of those who need EHC services cannot access them. Even where services are available, people often fail to seek them out due to their low levels of knowledge regarding hearing loss, and the stigma associated with hearing loss. Hence, a public health approach is essential to ensuring that technology and innovation can reach and benefit all those in need. The many challenges confronting the field of ear and hearing care – as analysed in this report, along with solutions presented – can be summarized to highlight the lack of public health attention given to ear and hearing care and the need for a public health approach. Summarizing the rising risk, numbers, and impact of hearing loss that contribute a significant share of the Global Burden of Diseases, and are responsible for over 35 million DALYs annually,31 must serve as a wake-up call for health policy-makers across the world. To ensure that all world citizens can enjoy a state of optimum health and well-being, EHC services must be accessible to all. Adopting a people-centred approach that integrates ear and hearing care into national health care systems as part of universal health coverage is the only way to confront this growing challenge. The World report on hearing proposes the H.E.A.R.I.N.G. package as a comprehensive list of interventions to address all aspects of ear and hearing problems throughout 31 See: http://www.healthdata.org/research-article/global-burden-369-diseases-and-injuries-1990%E2%80%932019-systematic-analysis- global-burden. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 245 the life course. Along with showing the costs for investing in ear and hearing care, including the benefits and economic gains of doing so, the report further sets a global scale-up target for 2030 and outlines tracer indicators that can monitor global progress towards the target. Countries must act to assess their own requirements, prioritize the interventions most relevant to serving their population needs, and integrate them systematically into their national health care plans using available resources. Key recommended actions for doing this are set out below. 4.7.1 RECOMMENDATIONS FOR MINISTRIES OF HEALTH RECOMMENDATION 1: INCLUDE IPC-EHC IN UNIVERSAL HEALTH COVERAGE Actions: • Determine population needs and priorities for ear and hearing care in each individual country and integrate the H.E.A.R.I.N.G. package into universal health care, based on identified priorities. • Ensure equitable access to EHC services for all, including those living in remote areas or belonging to vulnerable groups. • Provide financial risk protection and reduce out-of-pocket expenses for ear and hearing care. • Involve other government sectors and civil society, including organizations for people who are deaf and hard of hearing in the planning and implementation process, to foster a holistic, collaborative approach. RECOMMENDATION 2: STRENGTHEN HEALTH SYSTEMS TO DELIVER IPC-EHC AT ALL LEVELS OF CARE Actions: • Consider IPC-EHC as part of national health plans for care provision at all levels of service delivery (community, primary, secondary and tertiary levels) in an integrated way, addressing needs of all sections of the population including vulnerable groups. • Ensure the integration of ear and hearing care into health services provided across the life course, including, among others, child health programmes, healthy ageing, occupational health services, environmental health, and health promotion activities. WORLD REPORT ON HEARING246 • Establish, or augment, educational programmes for the development of professional cadres for ear and hearing care. • Strengthen the training of other (non-EHC) health-care providers and others (e.g. teachers, social workers, etc.) on hearing loss, its impact, and their roles in supporting access to effective communication. • Improve access to high-quality, affordable hearing technologies (hearing aids, cochlear implants and other assistive devices) and services required for their effective use. RECOMMENDATION 3: UNDERTAKE AWARENESS CAMPAIGNS THAT ADDRESS ATTITUDES TOWARDS, AND STIGMA RELATED TO, EAR DISEASES AND HEARING LOSS Actions: • Inform the public on the avoidable causes of ear diseases and hearing loss, their impact, and the effectiveness of interventions across the life course. • Develop an effective communication strategy to change listening behaviours among those at risk of hearing loss due to unsafe listening practices. • Use the advocacy opportunity provided each year by the World Hearing Day, as a means to inform and educate the public on ear and hearing care. • Include modules on IPC-EHC in professional training courses, such as for ENT, audiology and speech therapy, in order to foster a public health approach among EHC professionals. • Advocate with relevant government sectors for communication and education through the provision of sign language services and other means, such as captioning. RECOMMENDATION 4: DETERMINE TARGETS, MONITOR NATIONAL TRENDS, AND EVALUATE PROGRESS Actions: • Assess progress towards EHC targets using the identified tracer indicators. • Identify and include comprehensive EHC indicators in national health information systems and ensure their regular monitoring. • Publish indicators and assess progress towards achieving the targets, as part of the national health reports. SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 247 • Assess hearing loss as part of population-based health surveys and report this in a standardized manner (i.e. in accordance with WHO grades of hearing loss32). • Share data, knowledge and resources with other countries and across regions through strong partnerships and collaborative networks. RECOMMENDATION 5: PROMOTE HIGH-QUALITY PUBLIC HEALTH RESEARCH ON EAR AND HEARING CARE Actions: • Develop a national research agenda in line with global and national priorities. • Promote and support research and studies that focus on the relevance, implications and application of research findings on public health. • Strengthen links between ministries of health, research organizations and institutions for a collaborative approach to ensure that research is aligned with national EHC priorities. • Establish a mechanism to encourage funding of public health research that focuses on ear and hearing care. 4.7.2 RECOMMENDATIONS FOR INTERNATIONAL ORGANIZATIONS RECOMMENDATION 1: ALIGN WITH WHO’S GLOBAL TARGETS FOR EAR AND HEARING CARE, AND SUPPORT THEIR MONITORING Actions: • Advocate for access to H.E.A.R.I.N.G. interventions as part of ongoing efforts to achieve SDG 3.8. • Support low- and middle-income countries in the development, implementation and monitoring of IPC-EHC services. • Support the creation of a WHO-led global monitoring system for assessing tracer indicators that monitor the effective coverage of H.E.A.R.I.N.G. interventions. 32 See: https://www.who.int/pbd/deafness/hearing_impairment_grades/en/ WORLD REPORT ON HEARING248 RECOMMENDATION 2: TAKE STEPS TO IMPROVE KNOWLEDGE, ATTITUDES AND PRACTICES WITH RESPECT TO EAR AND HEARING CARE Actions: • Engage with thought leaders and influencers at global and regional levels to raise awareness on, and outline, means for mitigating stigma related to hearing loss. • Use the opportunity provided each year by the World Hearing Day to raise awareness on hearing loss. • Promote the WHO Make Listening Safe33 initiative and adopt practices that are aligned to its recommendations. RECOMMENDATION 3: STIMULATE GENERATION AND DISSEMINATION OF KNOWLEDGE ON EAR AND HEARING CARE Actions: • Encourage and support research related to ear and hearing care, in line with WHO-identified research priorities. • Build international research collaborations that generate evidence relevant to country context and facilitate exchange of knowledge. • Collaborate through data generation and sharing, using consistent methodology and platforms. RECOMMENDATION 4: PARTICIPATE ACTIVELY IN GLOBAL ACTION FOR EAR AND HEARING CARE Actions: • Join, support and contribute to the WHO-led World Hearing Forum34 and its global action for ear and hearing care. • Promote global collaboration for improving access to high-quality, affordable hearing technologies and related services. • Ensure that ear and hearing care is integrated into global and regional initiatives targeting, in particular, the health of children, adolescents and older adults. 33 See: https://www.who.int/activities/making-listening-safe 34 See: https://www.who.int/activities/promoting-world-hearing-forum SECTION 4 DESIGNING THE WAY FORWARD: A PUBLIC HEALTH FRAMEWORK FOR EAR AND HEARING CARE 249 4.7.3 RECOMMENDATIONS FOR STAKEHOLDERS, INCLUDING PROFESSIONAL GROUPS, CIVIL SOCIETY, AND PRIVATE SECTOR ENTITIES RECOMMENDATION 1: SUPPORT NATIONAL GOVERNMENTS AND WHO IN THE PROVISION AND MONITORING OF EAR AND HEARING CARE Actions: • Advocate with, and support governments in, the provision of IPC-EHC through integration of H.E.A.R.I.N.G. interventions into national health plans. • Support WHO in monitoring identified tracer indicators, as a means for assessing the growth in the provision of EHC services globally over time. RECOMMENDATION 2: CONTRIBUTE TO THE GENERATION OF KNOWLEDGE REGARDING PUBLIC HEALTH ASPECTS OF EAR DISEASES AND HEARING LOSS Actions: • Undertake research in line with WHO identified research priorities; publish and share results. • Improve EHC literacy among ear and hearing professionals by including a public health module in relevant professional courses. RECOMMENDATION 3: COLLABORATE TO ENSURE THAT ALL STAKEHOLDERS CAN CONTRIBUTE TO, AND SHARE A COMMON VISION OF, EAR AND HEARING CARE Actions: • Establish and support regional and subregional multistakeholder groups to identify region-specific needs, resources and opportunities, in collaboration with WHO. • Join and support the World Hearing Forum for promoting coordinated and collaborative global action on hearing loss. 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WORLD REPORT ON HEARING L’immagine di copertina è una rappresentazione artistica di un’onda sonora che entra nella coclea. L’onda sonora in questa immagine rappresenta le note musicali del ‘Sound of Life’, una canzone creata appositamente per l’iniziativa OMS Make Listening Safe da Ricky Kej. Scarica la canzone qui https://youtu.be/EmXwAnP9puQ WORLD REPORT ON HEARING ii WORLD REPORT ON HEARING CONTRIBUTI ALLA VERSIONE ITALIANA Responsabili del progetto Mauro Menzietti Valentina Faricelli Udito Italia Onlus - Nonno Ascoltami FIA, Federazione Italiana Audioprotesisti ITALY Editore Eca Edit srl Pescara - Italy info@ecaedit.it Redazione e impaginazione Virginia Gigante Lara D’Onofrio Traduzioni a cura di Francesco Brancone Revisione scientifica Giulia Palombaro © 2021 Udito Italia Onlus Questa traduzione non è stata creata dall’Organizzazione mondiale della sanità (OMS). L’OMS non è responsabile del contenuto o dell’accuratezza di questa traduzione. L’edizione originale inglese sarà l’edizione vincolante e autentica”. World report on hearing. Ginevra: Organizzazione Mondiale della Sanità; 2021. Licenza: CC BY-NC-SA 3.0 IGO. Questa traduzione è disponible: CC BY-NC-SA 3.0. iiiINDICE INDICE Prefazione v Ringraziamenti ix Abbreviazioni xii Introduzione 1 %ibliografia 5 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA 9 1.1 Panoramica 9 1.2 L’ascolto nel corso della vita 11 1.3 Declino della capacità uditiva 36 1.4 L’impatto della perdita dell’udito non trattata 44 %ibliografia 51 2 SOLUZIONI NEL CORSO DELLA VITA: La perdita dell’udito pu´ essere affrontata 65 2.1 Panoramica 65 2.2 Prevenzione della perdita dell’udito e delle condizioni dell’orecchio 67 2.3 ,dentificazione precoce della perdita dellȆudito 83 2.4 Cura e riabilitazione 95 %ibliografia 120 iv WORLD REPORT ON HEARING 4 PROGETTARE LA STRADA DA SEGUIRE: UN QUADRO DI SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 201 4.1 Panoramica 201 4.2 H.E.A.R.I.N.G. interventi come parte della copertura sanitaria universale 204 4.3 Investire nell’orecchio e nella cura dell’udito: il business case 212 4.4 Aumentare la cura dell’orecchio e dell’udito: obiettivi globali e indicatori traccianti 223 4.5 Fornitura di cure uditive e dell’udito incentrate sulle persone attraverso un sistema sanitario raࢆorzato 226 4.6 Facilitatori dei sistemi sanitari per l’integrazione della cura dell’orecchio e dell’udito incentrata sulle persone 232 4.7 Conclusione e raccomandazioni: rendere la cura e l’assistenza all’udito accessibile a tutti 244 %ibliografia 251 ALLEGATI WEB APPENDICE WEB A Qualità delle prove https://apps.who.int/iris/bitstream/hand le/10665/339906/9789240021501-eng.pdf APPENDICE WEB B Il ritorno dell’investimento dalle azioni per prevenire e/o mitigare l’impatto della perdita dell’udito https://apps.who.int/iris/bitstream/hand le/10665/339906/9789240021501-eng.pdf APPENDICE WEB C Indicatori traccianti per monitorare i progressi nella cura dell’orecchio e dell’udito https://apps.who.int/iris/bitstream/hand le/10665/339906/9789240021501-eng.pdf 3 SFIDE DA AFFRONTARE NELLA CURA DELL’ORECCHIO E DELL’UDITO 139 3.1 Panoramica 139 3.2 Andamento demografico 141 3.3 Alfabetizzazione dell’orecchio e della cura dell’udito e stigma correlato alla perdita dell’udito 146 3.4 Le sfide per i sistemi sanitari e le potenziali soluzioni 154 %ibliografia 190 vPREFAZIONE PREFAZIONE La perdita dell’udito è stata spesso definita una “disabilità invisibile”, non solo per la mancanza di sintomi visibili, ma perché è stata a lungo stigmatizzata nelle comunità e ignorata dai responsabili politici. La perdita dell’udito non trattata è la terza causa di disabilità a livello globale. Colpisce persone di tutte le età, così come le famiglie e le economie. Si stima che ogni anno vadano persi 1.000 miliardi di dollari a causa della nostra incapacità collettiva di affrontare adeguatamente la perdita dell’udito. Se l’onere finanziario è enorme, ciò che non può essere quantificato è il disagio causato dalla perdita di comunicazione, istruzione e interazione sociale che accompagna la perdita dell’udito non affrontata. Ciò che rende questa questione più urgente che mai, è il fatto che con tutta probabilità il numero di persone con perdita dell’udito aumenterà notevolmente nei prossimi decenni. Oltre 1,5 miliardi di persone attualmente soffrono di un qualche grado di ipoacusia. Questo numero potrebbe crescere fino a 2,5 miliardi entro il 2050. Inoltre, 1,1 miliardi di giovani sono a rischio di perdita dell’udito permanente a causa dell’ascolto di musica ad alto volume per periodi di tempo prolungati. Il Rapporto mondiale sull’udito mostra che misure di sanità pubblica efficaci e basate sull’evidenza, possono prevenire molte cause di perdita dell’udito. Per guidare le azioni future, il Rapporto mondiale sull’udito delinea un pacchetto di interventi che gli Stati membri devono adottare e propone strategie per la loro integrazione nei sistemi sanitari nazionali, per garantire un accesso equo ai servizi di assistenza all’udito per tutti coloro che ne hanno bisogno, senza disagio finanziario, in conformità con i principi della copertura sanitaria universale. La pandemia di COVID-19 ha sottolineato l’importanza dell’udito. Poiché abbiamo lottato per mantenere i contatti sociali e rimanere in contatto con la famiglia, gli amici e i colleghi, abbiamo fatto affidamento sulla possibilità di ascoltarli più che mai. La pandemia ci ha anche insegnato una dura lezione, che la salute non è un bene di lusso, ma il fondamento dello sviluppo sociale, economico e politico. Prevenire e curare malattie e disabilità di ogni tipo non è un costo, ma un investimento in un mondo più sicuro, più equo e più prospero per tutte le persone. Mentre reagiamo e ci riprendiamo dalla pandemia, dobbiamo ascoltare le lezioni che ci sta insegnando, compreso il fatto che non possiamo più permetterci di fare orecchie da mercante sulla perdita dell’udito. Dr Tedros Adhanom Ghebreyesus Direttore Generale, World Health Organization vi WORLD REPORT ON HEARING Quando viaggio in Paesi di tutto il mondo, incontro ragazze che hanno lottato contro la povertà, i matrimoni precoci e la discriminazione per restare a scuola e terminare gli studi. Queste giovani donne provengono da ambienti diversi, praticano religioni diverse e parlano lingue diverse; ma condividono la stessa determinazione a perseguire i propri sogni per il futuro. Con tutte le barriere all’uguaglianza che devono affrontare ragazze, donne e altre persone emarginate, coloro che hanno bisogno di cure per l’udito sono ulteriormente svantaggiati e troppo spesso lasciati indietro. Circa 1 miliardo di persone in tutto il mondo soffre di una perdita uditiva evitabile. L’OMS stima che oltre 400 milioni, tra cui 34 milioni di bambini, convivono con una perdita dell’udito invalidante, che influisce sulla loro salute e sulla qualità della vita. Poiché anche io ho sofferto di perdita dell’udito, so che questo non deve essere un ostacolo all’istruzione. Con l’accesso all’assistenza sanitaria, alla riabilitazione e alla tecnologia, le persone con ipoacusia invalidante possono partecipare equamente all’istruzione, al lavoro e alla vita di comunità. La perdita dell’udito non impedisce loro di raggiungere iciascuno il proprio potenziale: povertà e discriminazione, invece sì. Per affrontare questa sfida globale di salute pubblica, il Rapporto mondiale sull’udito offre azioni basate su prove, eque ed economicamente vantaggiose per la cura dell’orecchio e dell’udito. Seguendo le linee guida contenute in questo rapporto, gli Stati membri dell’OMS possono aiutare a prevenire la perdita dell’udito e garantire che le persone con perdita dell’udito possano accedere alle cure di cui hanno bisogno. Spero che i nostri leader lavoreranno insieme per attuare le raccomandazioni del Rapporto mondiale sull’udito e dare a ogni persona con perdita dell’udito la possibilità di contribuire al nostro futuro condiviso. Malala Yousafzai Premio Nobel e messaggera di pace UN viiPREFAZIONE Fin dalla tenera età, sapevo che la musicasarebbe stata protagonista della mia vita. Ci sono milioni di persone là fuori che condividono gli stessi sentimenti. Negli ultimi quarantacinque anni, sono stato attento al mio modo di ascoltare la musica. Vorrei utilizzare il Rapporto mondiale sull’udito per trasmettere questo messaggio: “La musica è tutto, e anche il tuo udito”. La perdita dell’udito non colpisce solo i giovani, ma colpisce tutte le fasce d’età. Il modo in cui ascoltiamo la musica è ciò che conta; il volume può danneggiare l’udito per sempre. Quindi prenditi cura del tuo udito stando attento al volume con cui ascolti la musica. Ricorda, se lo perdi, l’udito non tornerà. Continua a ballare, resta al sicuro. Bryan Adams Musicista viii WORLD REPORT ON HEARING La capacità di ascoltare è un dono che viene dato agli esseri umani per apprezzare la straordinaria bellezza del mondo che ci circonda. Dona estetica alla vita. È anche il mezzo per il nostro apprendimento e l’interazione sociale. Dalla mia esperienza personale di bambino con disabilità, conosco il valore dell’istruzione e dell’apprendimento, che non è stato solo il mio conforto nelle ore più buie della mia vita, ma anche il mezzo con cui raggiungere il mio pieno potenziale. Pertanto, trovo inaccettabile che anche oggi milioni di bambini nel mondo siano privati del diritto all’istruzione e alla comunicazione, limitandoli così nelle loro aspirazioni. Lo è ancora di più perché la perdita dell’udito può essere sia prevenuta che affrontata. Il Rapporto mondiale dell’OMS sull’udito fa luce sui bisogni di quasi 450 milioni di persone che necessitano di servizi di riabilitazione per la loro perdita uditiva disabilitante. Fornisce inoltre informazioni approfondite su come i servizi possono essere sviluppati in modo equo in tutto il mondo. A nome di Rehabilitation International, apprezzo il continuo impegno dell’OMS per questa disabilità nascosta e siamo orgogliosi di contribuire a questo importante rapporto. Spero sinceramente che la pubblicazione di questo Rapporto promuova ulteriormente l’attuazione della Risoluzione “Prevenzione della sordità e della perdita dell’udito” adottata dall’Assemblea Mondiale della Sanità nel 2017, in modo che tutte le persone, comprese quelle con perdita dell’udito, possano condurre una vita sana e appagante. Rehabilitation International è pienamente impegnata a collaborare con l’Organizzazione Mondiale della Sanità in questo lodevole sforzo. Zhang Haidi Presidente di Rehabilitation International Chairperson, Federazione Cinese per Persone Disabili ixRINGRAZIAMENTI RINGRAZIAMENTI L’Organizzazione Mondiale della Sanità (OMS) desidera ringraziare gli oltre 200 consulenti ed editori di rapporti, revisori, personale dell’OMS e altri collaboratori per il loro supporto e guida. Senza la loro dedizione, supporto e competenza questo rapporto non sarebbe stato possibile. Il World Report on Hearing è stato redatto da Shelly Chadha e Alarcos Cieza, con il supporto tecnico di Kaloyan Kamenov e Ricardo Martinez, sotto la guida generale di Bente Mikkelsen, direttore del Dipartimento di malattie non trasmissibili, e Ren Minghui, vicedirettore generale. Lo sviluppo e la finalizzazione sono stati possibili grazie al supporto di Karen Reyes e Christine Turin Fourcade. Il rapporto ha beneficiato del contributo del seguente personale dell’OMS: Hala Sakr Ali, Elena Altieri, Islene Araujo de Carvalho, Melanie Bertram, Somnath Chatterji, Chitra Chander, Giorgio Cometto, Neerja Choudhary, Diana Estevez, Gaurav Gupta, Hayatee Hasan, Ivan Dimov Ivanov, Kim Warrick Junsuk, Chapal Khasnabis, Etienne Krug, Teena Kunjumen, Ariane Laplante- Lévesque, Alina Lashko, Maryam Mallick, Satish Mishra, Ellick Narayan, Patanjali Dev Nayar, Alana Officer, Nuria Toro Polanco, Nathalie Roebbel, Sarah Russel, Juan Carlos Silva, Karin Stenberg, Gabriella Stern, Yuka Sumi, Emma Tebbutt e Adriana Velasquez. CONTRIBUTI GUIDA EDITORIALE Jackie Clark, Susan Emmett, Suneela Garg, Linda Hood, Catherine McMahon, Carrie Niemann, Bolajako Olusanya, George Tavartkiladze, Peter Thorne. COMITATO CONSULTIVO E REVISORI Mazin Al Khabori, Kasper Bergmann, Mahmood Bhutta, Abraham Blau, Li-Rong Cheng, Michael Chowen, Carolina Der, John Eichwald, Rachael Hapunda, Kelly King, Frank Lin, Isaac Macharia, Norberto Martinez, Donald Bradley McPherson, Amarilis Melendez, Katrin Neumann, Gerard O’Donoghue, Milan Profant, Diego Santana-Hern£ndez, Lana Shekim, Andrew Smith, Paige Stringer, De Wet Swanepoel, Ruth Warick, Blake Wilson, Jean Wilson. AUTORI E REVISORI DI BACKGROUND PAPER Arun Agarwal, Sue Archbold, Agnes Au, David M. Baguley, Elizabeth F. Beach, Melanie Bertram, Mahmood Bhutta, Isabelle Boisvert, Chris Brennan-Jones, Xingkuan Bu, Robert Cowan, Sharon L. Cushing, Adrian C. Davis, Virgil De Mario, Carolina Der, Lauren Dillard, [the late] Robert Dobie, Richard C. Dowell, Susan D. Emmett, Kris English, Harald A. x WORLD REPORT ON HEARING Euler, Melanie Ferguson, Samuel C. Ficenec, Jean-Pierre Gagné, Suneela Garg, René Gifford, Karen A. Gordon, Helen Goulios, Lydia Haile, Wyatte C. Hall, Rachael Hapunda, Howard Hoffman, Elizabeth A-L. Holt, Linda J. Hood, Gitte Keidser, Sarah M. Kortebein, Teena Kunjumen, Ariane Laplante-Lévesque, Judith Lieu, Frank Lin, Lucero Lopez, Isaac Macharia, Norberto Martinez, Ricardo Martinez, David McDaid, Catherine McMahon, Bradley McPherson, Nikki Mills, Thais Morata Johannes Mulder, Wilhelmina Mulders, Joseph Murray, Serah N. Ndegwa, Katrin Neumann, Carrie Niemann, Ian O’Brien, Bolajoko Olusanya, Neelima Panth, Blake C. Papsin, Danielle Powell, William T. Reed, Mariana Reis, John S. Schieffelin, Alan Shan, Sunil D. Sharma, Kristin Snoddon, Mario Svirsky, George Tavartkiladze, Peter Thorne, James Ting, Kelly Tremblay, Alejandra Ullauri, Theo Vos, Ruth Warick, Karl R. White, Warwick Williams, Michael Yong, Christine Yoshinaga-Itano, Robin Youngs. RACCOLTA DEI DATI, ANALISI ED ELABORAZIONE Arun Agarwal, Melanie Bertram, Paul Briant, Carolina Der, Somenath Chatterjee, Nathan Green, Tim Jesudason, Lydia Haile, Rachael Hapunda, Institute for Health Metrics and Evaluation (IHME), Ricardo Martinez, David McDaid, Catherine McMahon, Aislyn Orji, A-La Park, Alejandra Rodarte, Jaimie Steinmetz, George Tavartkiladze, David Tordrup, Theo Vos. COLLABORATORI ALLA DIVULGAZIONE Paige Stringer with the support of Elena Altieri, Hayatee Hasan, Matt Howick, Karen Reyes, Sarah Russel, and Gabriella Stern. COLLABORATORI DI CASI DI STUDIO E FOTOGRAFIE Ratna Anggraeni; Nazmul Bari; Bianca Birdsey; Matt Brady; Karen Mojica (Mayflower Medical Outreach); Ruth Thomsen, Greg Nassar (NHS Audiology Supplies Group and British Academy of Audiology); Kahn Bury; China Research and Rehabilitation Center for Hearing and Speech Impairment; Oh Chunghyeon (CWM hospital, Fiji); Sneha Das Gupta; Janet DesGeorges (Hands & Voices, USA); Raphael Elmiger (Federal Office of Public Health, Switzerland); Susan Emmett; Joaquin Escoto (Ministry of Health of Nicaragua); Gemeinschaft Eltern und Freunde Hörgeschädigter, Austria; Global Coalition of Parents of Children who are Deaf or Hard of Hearing; Rachael Hapunda (Ministry of Health, Zambia); Hear the World Foundation; Italian Pediatric Federation Audiology Network; Government of Japan; Ozlem Konukseven; Nguyen Thi Hong Loan; Cleopa Kilonzo Mailu (Permanent Mission of Republic of Kenya to the United Nations Office and other international organizations, Geneva, Switzerland); Maryam Mallick (WCO Pakistan); Olga Manukhina; Peace Masinde-Mutuma; Otto Mejia; Shadrack Mngemane (The Aurum Institute, South Africa); National Association of Parents of Deaf Children, Uganda; Mouna Sakly (Ministry of Health of Tunisia); Diego Santana (CBM International); Seema Rupani Shah (SNR Hearing Centre, Kenya); Sandhya Singh (National Department of Health, South Africa), Snigdha Sarkar (Anwesha Kolkata, India); Wendy Dawn Snowdon; Sound xiRINGRAZIAMENTI Hearing International; Starkey Hearing Foundation; Paige Stringer (Global Foundation For Children With Hearing Loss); George Tavartkiladze (National Research Centre for Audiology and Hearing Rehabilitation, Moscow, Russian Federation); Glyn Vaughan (All Ears Cambodia); Ruth Warick (International Federation of Hard of Hearing People). ALTRI COLLABORATORI Members of the World Hearing Forum: Luke Alexander, Sue Archbold, Kasper Bergmann, Bianca Birdsey, Jeanette Blom, Ora Buerkli, Lise Lotte Bundesen, Patricia Castellanos de Muñoz, Michael Chowen, Jackie Clark, John Eichwald, Susan Emmett, Alison End Fineberg, Suneela Garg, Linda Hood, Julia Ligeti, Isaac Macharia, Norberto Martinez, Catherine McMahon, Katrin Neumann, Alana Nichols, Carrie Niemann, M Kathleen Pichora-Fuller, Ann Porter, Milan Profant, Audra Renyi, Diego Santana, Paige Stringer, George Tavartkiladze, Bowen Tang, Peter Thorne, Elena Torresani, Ruth Warick, Stephen Williamson, Lena Lai Nar Wong, Lidia Zabala. GESTIONE CITAZIONI Chitra Chander, Arunda Malachi, Kai Nash, and Azhar Rahman. PROGETTO GRAFICO E LAYOUT Inis Communication PROGETTO DELLA COPERTINA Ricky Kej, Howdy Pardners WHO also wishes to acknowledge the following organizations for their generous financial support in the development, publication and dissemination of the World report on hearing: CBM International; Centers for Disease Control and Prevention, USA; Mr Michael Chowen, United Kingdom; International Society of Audiology; National Institute on Deafness and Other Communication Disorders, USA; and Rehabilitation International. xii WORLD REPORT ON HEARING ABBREVIAZIONI AABR Risposta cerebrale uditiva automatizzata ABR Risposta uditiva del tronco cerebrale AOM Otite media acuta APD Disturbo dell’elaborazione uditiva APGAR Metodo di punteggio per misurare la condizione fisica di un neonato ARHL Ipoacusia legata all’età ASHA American Speech Language & Hearing Association ASOM Otite media acuta suppurativa ASSR Risposta uditiva allo stato stazionario CART Accesso alla comunicazione traduzione in tempo reale CCAC Collaborazione per l’accesso alla comunicazione tramite sottotitoli CDC Centri per il controllo e la prevenzione delle malattie (Stati Uniti) CMA Assistente/agente sanitario della comunità CHW Operatore sanitario comunitario CMV Citomegalovirus CSOM Otite media cronica suppurativa DALY Anni di vita vissuti in condizione di disabilità dB Decibel dBA Decibel ponderato A D/HH Non udenti/con problemi di udito DLU Deaf Link Uganda DR-TB Tubercolosi farmacoresistente DST Test di soppressione del desametasone DTC Diretto al consumatore/cliente EHC Per la cura dell’orecchio e dell’udito xiiiABBREVIAZIONI EHDI Rilevamento e intervento precoce dell’udito ENT Orecchio, naso e gola FDA Food and Drug Administration (Stati Uniti) FLIP Programma di intervento precoce incentrato sulla famiglia (Austria) FM Modulazione di frequenza FRESH Risorse concentrate su un’efficace salute scolastica GBD Carico globale di malattia GDP Prodotto interno lordo medico di medicina generale GP Medico di Medicina generale HHL Perdita dell’udito nascosta HIV Virus dell’immunodeficienza umana Hz Unità di misura della frequenza delle vibrazioni sonore (Hertz) ICF International Classification of Functioning, Disability and Health IPC-EHC Udito e cura dell’udito integrata centrata sulle persone ITU International Telecommunication Union MDR-TB Tubercolosi multiresistente ai farmaci MHMS Ministero della Salute e dei Servizi Medici (Fiji) MoH Ministero della Salute NGO Organizzazione non governativa NHSP Programma di screening dell’udito neonatale (Israele) NICU Unità di terapia intensiva neonatale NIHL Ipoacusia indotta dal rumore NSOM Otite media non suppurativa OAE Emissioni otoacustiche OM Otite media OME Otite media con versamento OTC Farmaci da banco PCV Vaccino coniugato pneumococcico PEHC Cura primaria dell’orecchio e dell’udito PEHC-TR Risorse di formazione primarie per la cura dell’orecchio e dell’udito WORLD REPORT ON HEARING PSAP Prodotto di amplificazione del suono personale PTA Audiometria a tono puro QALY Anni di vita in condizione di buona salute QOL Qualità della vita RAHL Valutazione rapida della perdita dell’udito RCT Studio randomizzato di controllo SDG Obiettivo di sviluppo sostenibile SFHA Apparecchi acustici autoadattanti SLT Logopedista SSNHL Ipoacusia neurosensoriale improvvisa STT Discorso da testo STTI Interpretazione discorso da testo STTR Rapporto discorso da testo TEOAE Emissione otoacustica evocata da transiente UN Nazioni Unite UNCRPD Convenzione delle Nazioni Unite sui diritti delle persone con disabilità UNHS Screening universale dell’udito neonatale USA Stati Uniti d’America VA Veterans Affairs (USA) WHA Assemblea Mondiale della Sanità dell’OMS WHO Organizzazione Mondiale della Sanità WHF Forum mondiale dell’udito WISN Indicatore della forza lavoro per le esigenze di personale (OMS) YLD Anni vissuti con disabilità xiv ABBREVIAZIONI xv xvi WORLD REPORT ON HEARING © H ea r t he W or ld F ou nd at io n Cura dell’udito per tutti 1INTRODUZIONE L’udito è il senso con cui percepiamo i suoni che ci circondano; attraverso l’udito interagiamo con il nostro ambiente, comunichiamo con gli altri, esprimiamo i nostri pensieri e acquisiamo istruzione. A livello globale, più di 1,5 miliardi di persone sperimentano un calo della capacità uditiva nel corso della vita, di cui almeno 430 milioni hanno bisogno di cure. La perdita dell’udito, se non identificata e affrontata, può avere conseguenze di vasta portata, influenzando negativamente lo sviluppo del linguaggio, il benessere psicosociale, la qualità della vita, il livello di istruzione e l’indipendenza economica in varie fasi della vita (1-3). Non affrontata, la perdita dell’udito impone un costo globale di oltre  980 miliardi l’anno e potenzialmente mette a rischio l’obiettivo globale degli Stati membri delle Nazioni Unite di porre fine alla povertà e garantire che tutte le persone su questo pianeta godano di pace e prosperità entro il 2030 (4, 5). Molte cause di perdita dell’udito possono essere prevenute. Le comuni malattie dell’orecchio, le infezioni, le malattie prevenibili con i vaccini e l’esposizione a rumore e sostanze chimiche, mettono in pericolo l’udito di molte persone di età diverse. L’Organizzazione Mondiale della Sanità (OMS) stima, ad esempio, che più di 1 miliardo di giovani si metta a rischio di perdita permanente dell’udito, spesso inconsapevol- mente, ascoltando musica ad alta intensità per lunghi periodi di tempo. Mitigare tali rischi attraverso un’azione di sanità pubblica è essenziale per affrontare la perdita dell’udito. Nel corso della vita, le persone con problemi all’orecchio o ipoacusia possono trarre grandi benefici da interventi efficaci e disponibili. Gli ultimi decenni hanno visto INTRODUZIONE Il Rapporto mondiale sull’udito immagina un mondo in cui nessun individuo debba trovarsi in condizione di sperimentare la perdita dell’udito per cause prevenibili e le persone ipoacusiche possano raggiungere il pieno potenziale con la riabilitazione, l’educazione e la consapevolezza della propria condizione. © H ea r t he W or ld F ou nd at io n 2 WORLD REPORT ON HEARING progressi rivoluzionari nel campo della tecnologia dell’udito, della diagnostica e della telemedicina con innovazioni che consentono di identificare le malattie dell’orecchio e la perdita dell’udito a qualsiasi età e in qualsiasi ambiente. La gestione medica e chirurgica, gli apparecchi acustici, gli impianti cocleari, la terapia riabilitativa, il linguaggio dei segni e l’uso dei sottotitoli sono soluzioni che possono garantire che le persone con malattie dell’orecchio o ipoacusie accedano all’istruzione e alla comunicazione e abbiano quindi l’opportunità di realizzare il proprio potenziale. Nonostante l’esistenza e l’efficacia di questi mezzi, la stragrande maggioranza di chi ne avrebbe bisogno, non vi ha accesso. La maggior parte delle persone con perdita dell’udito infatti vive in ambienti a basso reddito, in cui le risorse umane e i servizi per l’udito e la cura dell’udito non sono comunemente accessibili. Per affrontare questo problema, nel 2017, l’Assemblea Mondiale della Sanità ha adottato la risoluzione WHA70.13 (6) che esorta i governi a includere la cura dell’orecchio e dell’udito nel quadro di sistemi sanitari nazionali e istruisce l’OMS a fornire le prove e strumenti per farlo. Il Rapporto mondiale sull’udito è stato sviluppato con lo scopo principale di promuovere un’azione globale per un accesso equo alle cure dell’udito in tutti i contesti del mondo. Il rapporto fornisce prove chiare per considerare la perdita dell’udito una priorità globale per la salute pubblica e delinea l’H.E.A.R.I.N.G. come pacchetto di interventi a cui i paesi dovrebbero dare la priorità, tenendo conto ciascuno delle proprie circostanze nazionali. Le numerose sfide che i paesi devono affrontare in questi sforzi sono delineate nel Rapporto. Le sfide si sono ulteriormente intensificate durante la pandemia di COVID-19, che ha messo in luce la fragilità degli attuali sistemi sanitari e ha focalizzato l’attenzione sulla necessità di investire nell’assistenza sanitaria come mezzo per salvaguardare le popolazioni mondiali in futuro. Mentre i governi e le agenzie di sanità pubblica hanno il compito di costruire sistemi sanitari migliori e a prova di futuro, è necessario trarre lezioni e realizzare la visione di una copertura sanitaria universale. L’azione di sanità pubblica deve tenere conto dei cambiamenti demografici in corso: nei prossimi decenni si prevede un aumento di oltre 1,5 volte della perdita dell’udito. Dando priorità alla ipoacusia e integrando l’assistenza all’udito all’interno dei sistemi, gli Stati membri dell’OMS possono garantire che i servizi di assistenza all’udito siano accessibili come parte della copertura sanitaria universale, fornita attraverso i sistemi sanitari nazionali. È necessaria un’azione definitiva per realizzare non solo il mandato della risoluzione WHA70.13, ma anche i pertinenti obiettivi di sviluppo sostenibile (SDG): SDG3 (buona salute e benessere); SDG4 (istruzione di qualità); SDG8 (lavoro dignitoso e crescita economica); e SDG10 (uguaglianza). Nel 2015, quando i paesi hanno adottato la nuova agenda per lo sviluppo sostenibile sotto forma di 17 obiettivi, si sono impegnati a non lasciare indietro nessuno. Hanno riconosciuto che la fine della povertà deve essere sostenuta da strategie sia per costruire la crescita economica, sia per affrontare una serie di bisogni sociali, tra cui l’istruzione, la salute, la protezione sociale e le opportunità di lavoro. 3INTRODUZIONE Attraverso il Rapporto mondiale sull’udito, l’Organizzazione Mondiale della Sanità sottolinea la necessità e i mezzi per promuovere la cura dell’udito per servire l’agenda SDG (Obiettivo di Sviluppo Sostenibile) e la sua rilevanza per tutti, indipendentemente dall’età, dalla nazionalità o dallo stato dell’udito. Il rapporto invita gli Stati membri ad avviare un’azione positiva che includa e affronti i bisogni di coloro che vivono con malattie dell’orecchio e deficit dell’udito, nonché le popolazioni a rischio di tali condizioni. Invita inoltre la società civile, le agenzie di salute pubblica per lo sviluppo, le società professionali, gli operatori sanitari e i ricercatori a rispondere a questa chiamata globale in modo che tutte le persone possano godere di un buon udito come parte della buona salute e del benessere durante tutto il corso della vita. SCOPI E OBIETTIVI DEL RAPPORTO Gli obiettivi generali del Rapporto sono rendere la cura dell’orecchio e dell’udito una priorità globale per la salute pubblica, presentando la sua rilevanza nel corso della vita e definendo un approccio di salute pubblica per affrontare questa forma di cura dalla fase prenatale all’età adulta e fino all’età avanzata. Gli obiettivi delineati nel Rapporto includono: • stabilire la perdita dell’udito nel corso della vita come una priorità di salute pubblica tra i responsabili politici; • richiamare l’attenzione sulle soluzioni esistenti per prevenire e riabilitare la perdita dell’udito, nonché sulle sfide nella loro consegna e accesso; • documentare prove scientifiche ed esperienze nazionali sugli approcci per costruire servizi integrati per l’udito incentrati sulle persone, forniti attraverso i sistemi sanitari nazionali; • formulare raccomandazioni e fissare obiettivi che stimolino l’azione a livello nazionale per un migliore accesso alle cure per l’udito, attraverso l’integrazione dell’H.E.A.R.I.N.G. pacchetto di interventi nell’ambito della copertura sanitaria universale. 4 WORLD REPORT ON HEARING SVILUPPO DEL RAPPORTO Il Rapporto mondiale sull’udito è stato preparato attraverso un processo consultivo e basato sull’evidenza; la sua struttura, il contenuto e le raccomandazioni sono state guidate dalle parti interessate nel campo dell’udito. Dopo aver determinato la struttura, l’OMS ha identificato le esigenze di informazione e si è impegnata con un gruppo più ampio di ricercatori per sviluppare e rivedere documenti basati su revisioni di letteratura. Le informazioni provenienti da questi documenti sono state utilizzate per informare e modellare il testo del Rapporto. Le stime della prevalenza, degli anni vissuti con la disabilità e delle proiezioni future sono state effettuate in collaborazione con lo studio Global Burden of Disease dell’Institute of Health Metrics and Evaluation.1 I dati sono stati raccolti da sondaggi degli Stati membri e da consultazioni tenute in tutte e sei le regioni dell’OMS durante gli ultimi due anni. Sono state inoltre intraprese analisi economiche per comprendere meglio le implicazioni finanziarie della perdita dell’udito e i benefici della cura dell’udito. Esempi, casi clinici e fotografie sono stati presi o forniti da partner governativi e non governativi di tutto il mondo. Gli Stati membri sono stati consultati tramite una consultazione aperta sul Web e si è chiesto il loro feedback sulla bozza finale. L’elenco degli interventi prioritari è stato identificato attraverso un processo consultivo e ulteriormente perfezionato attraverso ampie revisioni della letteratura, valutazione dell’efficacia e del rapporto costi-benefici. Lo sviluppo è stato condotto in stretta collaborazione con diversi dipartimenti dell’OMS e la bozza finale è stata rivista dalle parti interessate. La qualità delle prove è stata valutata ed è documentata nell’ALLEGATO WEB A del Rapporto. Per garantire l’inclusività delle opinioni, si sono tenuti webinar per condividere le informazioni con tutti gli interessati; questi erano aperti a chiunque volesse partecipare. L’intero processo era finalizzato allo sviluppo di un Rapporto basato su prove, pur essendo radicato nella realtà e riflettendo esperienze di vita reale che non sono sempre riprese da una letteratura riconosciuta dagli esperti. PROSSIMI PASSI Dopo il lancio, il Rapporto mondiale sull’udito sarà ampiamente diffuso per promuovere l’attuazione delle sue raccomandazioni da parte degli Stati membri dell’OMS. L’OMS fornirà supporto tecnico e, ove necessario, svilupperà una guida basata su prove per facilitare la risposta degli Stati membri. 1 Vedi: http://www.healthdata.org/gbd/2019 5INTRODUZIONE BIBLIOGRAFIA 1. Olusanya BO, Neumann KJ, Saunders JE. The global burden of disabling hearing impairment: a call to action. Bull World Health Organ. 2014;92(5):367-73. 2. Nordvik š, Laugen Heggdal PO, Brännström J, Vassbotn F, Aarstad AK, Aarstad HJ. Generic quality of life in persons with hearing loss: a systematic literature review. BMC Ear Nose Throat Disord. 2018;18:1. 3. Shield B. Evaluation of the social and economic costs of hearing impairment. Hear-it AISBL; 2006. 4. World Health Organization. Global costs of unaddressed hearing loss and cost- effectiveness of interventions. Geneva: Switzerland; 2017. 5. United Nations. Transforming our world: the 2030 agenda for sustainable development. General Assembley 70 session. Disponibile su: https://www.unfpa.org/sites/default/files/ resource-pdf/Resolution_A_RES_70_1_EN.pdf; 2015, consultato gennaio 2021. 6. World Health Organization. WHA.70.13. World Health Assembly resolution on prevention of deafness and hearing loss. In: Seventieth World Health Assembly, Geneva, 31 May 2017. Resolutions and decisions, annexes. Disponibile su: http://apps.who.int/gb/ebwha/ pdf_files/WHA70/A70_R13-en.pdf?ua=1, consultato gennaio 2021. Il cambiamento sociale può mitigare l’impatto della perdita dell’udito: un caso di studio in India* *Contribuito da Anwesha Kolkatta. Vedi: https://anweshakolkata.org/en_US/ © Snigdha © S ni gd ha S ar ka r, An aw es ha K ol ka ta “Da bambina non udente ho lottato molto quando ero a scuola. Mia madre mi dice che nonostante l’adattamento con gli apparecchi acustici, la terapia e l’apprendimento della lingua scritta e parlata, nei primi anni sono riuscita abbastanza bene con l’aiuto dei miei insegnanti. Ma le cose sono diventate davvero difficili quando ho dovuto iniziare a imparare lingue diverse dalla mia lingua madre. Dipendo dai miei apparecchi acustici e dalla lettura delle labbra per capire cosa dicono gli altri e cercare di farlo in tre lingue era quasi impossibile. Anche se la legge nazionale sulle disabilità fa un’eccezione per i bambini sordi, questo “diritto della lingua unica” non era applicabile dove vivevo. I miei genitori hanno fatto del loro meglio per sostenermi in quella che sembrava una battaglia impossibile con i libri. Vedendo le mie lotte quotidiane e quelle di altri bambini sordi, mia madre, membro attivo di un’associazione di genitori, ha deciso di agire. Sono state presentate petizioni al governo e ai tribunali, ma la questione si è trascinata per anni, mentre finivo gli studi e mi iscrivevo all’università. Sono diventata un membro di un gruppo di autodifesa giovanile chiamato “Bondhu” e abbiamo deciso di unirci ai nostri genitori in questa lotta. Quando abbiamo parlato della nostra condizione e spiegato il nostro punto di vista, abbiamo notato una nuova presa di coscienza tra ile autorità. Alla fine, dopo cinque anni di lotta, ai bambini non udenti è stato concesso il diritto di imparare una lingua. Anche se non posso trarne beneficio, so che questo aiuterà altri bambini non udenti a continuare la loro istruzione e raggiungere i loro obiettivi. L’esperienza mi ha fatto capire il potere di parlare e l’importanza di farlo come persone con perdita uditiva; dobbiamo diventare noi stessi fautori del cambiamento sociale”. Sneha Das Gupta, dottoranda, India 8 WORLD REPORT ON HEARING 9CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA 1.1 PANORAMICA O Ogni individuo ha una traiettoria uditiva unica che è modellata da diverse influenze sperimentate nel corso della vita; queste includono caratteristiche genetiche e fattori biologici, comportamentali e ambientali. O Il corso della traiettoria dell’udito determina la capacità uditiva di una persona in qualsiasi momento della vita. I fattori causativi e protettivi influenzano la capacità uditiva. O Sebbene i fattori che influenzano la capacità uditiva possano essere riscontrati in diversi periodi della vita di una persona, è più probabile che alcuni fattori vengano sperimentati - o che gli individui possano essere più suscettibili ai loro effetti - in momenti specifici. O La sezione 1 descrive le influenze causali e protettive incontrate durante il periodo prenatale fino all’età avanzata, con attenzione posta su quelle più rilevanti per la salute pubblica. O La capacità uditiva viene comunemente misurata utilizzando l’audiometria a tono puro e classificata in base alle soglie uditive audiometriche. Qualsiasi calo della capacità uditiva è indicato come perdita dell’udito o danno uditivo2 la cui gravità può variare da lieve a totale. 2 In questo Rapporto, i termini “perdita dell’udito” e “menomazione dell’udito” sono usati in modo intercambiabile. CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA Il senso dell’udito è un aspetto chiave del funzionamento in tutte le fasi della vita: la sua perdita, se non adeguatamente affrontata, ha un forte impatto su tutta la società. 10 WORLD REPORT ON HEARING O A livello globale, più di 1,5 miliardi di persone soffrono di un qualche grado di perdita dell’udito. Di questi, si stima che 430 milioni abbiano una perdita uditiva di gravità moderata o maggiore nell’orecchio con migliore udito. La prevalenza della perdita dell’udito varia tra le regioni dell’OMS; la stragrande maggioranza delle persone colpite vive in paesi del mondo a basso e medio reddito. O L’impatto della perdita dell’udito su una persona è determinato non solo dalla gravità e dal profilo della perdita, ma anche in gran parte dal fatto che la perdita dell’udito sia affrontata da efficaci interventi clinici o riabilitativi e dalla misura in cui l’ambiente è sensibile ai bisogni della persona. O Se non affrontata, la perdita dell’udito può avere un impatto negativo su molti aspetti della vita: comunicazione; sviluppo del linguaggio nei bambini; cognizione; formazione scolastica; occupazione; salute mentale e relazioni interpersonali. La perdita dell’udito può causare una bassa autostima, è spesso associata allo stigma e può avere un impatto significativo sulle famiglie e su coloro che interagiscono e comunicano con chi ha una condizione di disabilità uditiva. O A livello globale, il deficit uditivo non trattato comporta un costo annuo di oltre  980 miliardi.3 Ciò include i costi relativi all’assistenza sanitaria, all’istruzione, alla perdita di produttività e ai costi sociali. Molti di questi costi possono essere mitigati attraverso l’uso di interventi economicamente vantaggiosi, come descritto più avanti nel Rapporto. L’udito è una componente chiave della capacità intrinseca umana; è il senso più affidabile per comunicare e relazionarsi con gli altri. Qualsiasi calo della capacità uditiva in qualsiasi momento della vita, se non affrontato in modo tempestivo, può influire negativamente sulle attività quotidiane (1, 2). La sezione 1 mette in evidenza questi fattori ed esplora l’impatto della perdita non trattata sulle persone colpite, sulle loro famiglie e sulla società. 3 Se non diversamente specificato, l’uso di “dollari” o “” in tutto il rapporto si riferisce al dollaro internazionale. 11CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA 1.2 L’UDITO NEL CORSO DELLA VITA Nel corso della vita, gli esseri umani sono esposti a molteplici fattori di rischio e di protezione che contribuiscono alla capacità uditiva complessiva (3). Il modello del corso di vita per lo sviluppo della salute considera la salute come una capacità emergente che si sviluppa dinamicamente nel tempo (4, 5). Questo modello prevede che la salute, compreso l’udito, sia influenzata da molteplici fattori che vanno da quello genetico e biologico a quello psicosociale ed economico (3, 5). Adottare un approccio corretto lungo tutto il corso della vita permette di considerare la tutela dell’udito come un obiettivo importante e la perdita invece non come un singolo evento o accadimento, ma come risultato di fattori vissuti dal periodo prenatale attraverso l’infanzia e l’età adulta (3, 6) e fino all’età avanzata.4 Ciò offre opportunità di intervento, sotto forma di prevenzione, identificazione, trattamento e riabilitazione, lungo tutto il corso della vita. L’udito può essere visualizzato sotto forma di una traiettoria (la traiettoria dell’udito), il cui corso determina la nostra capacità uditiva in qualsiasi momento. La traiettoria uditiva di un individuo dipende dalla capacità di base alla nascita e dai molteplici fattori di rischio o di prevenzione (3, 6), come descritto nella Figura 1.1. Il meccanismo con cui si origina l’udito nell’orecchio è illustrato nella Figura 1.2. 4 Le fasce di età utilizzate nel Rapporto mondiale sull’udito sono: periodo perinatale, 0-4 anni; infanzia e adolescenza, 5-17 anni; età adulta, 18-64 anni; adulti anziani, 65 anni e oltre. Sono molti i fattori che interagiscono nello sviluppo della traiettoria uditiva nel corso della vita. La traiettoria dell’udito di un individuo è determinata dal livello di base dell’udito alla nascita ed è poi influenzata da diversi fattori, causali e protettivi, sperimentati per tutto il corso della vita (3). 12 WORLD REPORT ON HEARING Fattori genetici Meningite e altre infezioni Ipossia o asfissia da parto Basso peso alla nascita Otosclerosi Fumo Otite media Infezioni virali Esposizioni a suoni e rumori forti Farmaci ototossici Età correlata a degenerazione senso-neurale Malnutrizione Traumi alla testa Lavoro correlato a prodotti chimici ototossici Iperbilirubinemia Fatturi casuali Capacità uditiva Fattori protettivi Nutrizione materna Igiene materna Allattamento materno Buona igiene dell’orecchio Vaccinazione Protezioni alla testa e a lesioni all’orecchio Evitare suoni e rumori forti Stile di vita sano Buona nutrizione Figura 1.1 L’udito nel corso della vita 1.2.1 FATTORI DETERMINANTI DELLA CAPACITÀ UDITIVA È evidente che molti fattori determinanti della capacità uditiva - genetici, biologici, psicosociali e ambientali - sperimentati nelle diverse fasi della vita, infl uenzano le orecchie e possono portare a conservare correttamente oppure a perdere l’udito. Molte condizioni dell’orecchio, come l’otite media, sono curabili e molte cause di ipoacusia - alimentazione, igiene dell’orecchio e rumori forti, per esempio - possono essere evitate adottando azioni preventive a livello personale. Sia i fattori causali che quelli preventivi interagiscono per determinare l’occorrenza, la natura, la gravità e la progressione della perdita dell’udito, quindi la capacità uditiva di un individuo è determinata da: (3) 1. Capacità uditiva di base alla nascita. 2. Esposizione o presenza di fattori causali (genetici, biologici, comportamentali o ambientali). 3. Azioni di protezione a mitigazione dei fattori di rischio. 1.2.2 FATTORI CHE CAUSANO LA PERDITA DELL’UDITO Sebbene questi fattori possano essere riscontrati in diversi periodi della vita, gli individui sono più sesposti ai loro eff etti durante alcuni momenti critici come ad esempio prima della nascita o nei primi anni di vita - periodi di sviluppo fi siologico e maturazione per il sistema uditivo e periodi critici per l’acquisizione del linguaggio (3). L’impatto dei fattori di rischio per la perdita dell’udito è anche maggiore nei gruppi di età più avanzata 13CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA Fattori genetici Meningite e altre infezioni Ipossia o asfissia da parto Otosclerosi Fumo Otite media Infezioni virali Esposizioni a suoni e rumori forti Farmaci ototossici Età correlata a degenerazione senso-neurale Malnutrizione Traumi alla testa Lavoro correlato a prodotti chimici ototossici Iperbilirubinemia Fatturi casuali Capacità uditiva Fattori protettivi Nutrizione materna Igiene materna Allattamento materno Buona igiene dell’orecchio Vaccinazione Protezioni alla testa e a lesioni all’orecchio Evitare suoni e rumori forti Stile di vita sano Buona nutrizione Figura 1.2 Il meccanismo dell’udito Fattori che influenzano la curva dell’udito: Caratteristiche genetiche Fattori biologici - per esempio condizioni di salute o malattie Fattori comportamentali - per esempio gli stili di vita Fattori ambientali quando si verifi cano cambiamenti neurodegenerativi. Tuttavia, il declino dell’udito sperimentato a questa età non è un processo degenerativo semplice, inevitabile, associato all’invecchiamento: è il risultato di infl uenze genetiche, condizioni di salute, stili di vita ed esperienze ambientali che sono incorporate nel sistema fi siologico dell’udito (6) e lo infl uenzato durante tutta la vita. Determinate condizioni di salute o infl uenze ambientali hanno maggiori probabilità di essere vissute in fasi specifi che. Questi sono dettagliati nel periodo di tempo in cui sono considerati i più rilevanti (Tabella 1.1). Fattori che possono essere incontrati in qualsiasi momento, o ugualmente, in tutte le fasi della vita sono elencati nella Tabella 1.2 (3, 8-10). Oltre alle informazioni fornite nelle tabelle, vengono evidenziati tre fattori specifi ci che possono portare alla perdita dell’udito: otite media; esposizione a rumori forti e perdita dell’udito legata all’età. Questi sono considerati particolarmente rilevanti dal punto di vista della salute pubblica, principalmente a causa della loro elevata prevalenza nella comunità o dei loro meccanismi preventivi e terapeutici ben consolidati. I suoni viaggiano attraverso la parte esterna dell’orecchio per colpire e provocare la vibrazione della membrana timpanica (timpano). Queste vibrazioni sono trasmesse attraverso i tre ossicini (ossa) nell’orecchio medio fi no alla coclea nell’orecchio interno. L’orecchio esterno e l’orecchio medio servono ad amplifi care il suono, cioè vibrazioni che mettono in movimento il fl uido contenuto all’interno della coclea. Questo movimento è trasformato da cellule ciliate (sensoriali) all’interno della coclea in un impulso elettrico e l’impulso nervoso viene trasmesso dal nervo uditivo al cervello, dove viene percepito come suono (7). Orecchio esterno Osso temporale Canale uditivo esterno Membrana timbanica Ossicini uditivi Tuba di Eustachio Canali semicircolari Nervo vestibolare Coclea 14 WORLD REPORT ON HEARING FATTORI GENETICI Questi fattori includono 11 sindromi attualmente identificate come associate alla perdita dell’udito, tra cui la sindrome di Usher, la sindrome di Alport, la sindrome di Pendred e molte altre (11). La consanguineità si riferisce al matrimonio tra parenti biologici stretti e può essere associata a una maggiore incidenza di problemi congeniti (12). INFLUENZA SULL’UDITO Oltre 250 geni sono associati a tipi di ipoacusia sindromica e non sindromica, che sono comunemente di natura ereditaria. Questi includono geni autosomici dominanti, autosomici recessivi e legati all’X-linked (11). CONSIDERAZIONI IMPORTANTI La perdita dell’udito genetica si riscontra più frequentemente nei bambini nati da genitori consanguinei (12-15). I matrimoni consanguinei sono una tradizione comune in molte comunità di tutto il mondo, dove tali unioni rappresentano collettivamente il 20-50% di tutti i matrimoni (12, 14, 16, 17). L’ipoacusia sindromica è accompagnata da ulteriori caratteristiche cliniche nel sistema visivo, nervoso, endocrino e di altro tipo (18, 19). STATISTICHE CORRELATE I fattori genetici sono responsabili di oltre il 50% della perdita dell’udito riscontrata nei neonati (18) e rappresentano quasi il 40% della perdita dell’udito infantile (20). I fattori sindromici rappresentano il 15% dell’ipoacusia neonatale, mentre l’ipoacusia non sindromica rappresenta il restante 35% (18). INFEZIONI INTRAUTERINE Infezioni contratte dalla madre durante il periodo intrauterino che possono portare alla perdita dell’udito. Queste includono agenti patogeni virali, batterici e parassiti. Le infezioni congenite comunemente associate alla perdita dell’udito includono: • Oxoplasmosi • Rosolia • Citomegalovirus (CMV) • Virus dell’herpes simplex di tipo 1 e 2 • Virus dell’immunodeficienza umana • Virus della coriomeningite linfocitaria • Virus Zika • Sifilide INFLUENZA SULL’UDITO Queste infezioni di solito sono associate a ipoacusia neurosensoriale congenita che varia da moderata a profonda e, in alcuni casi, a disturbi dell’elaborazione uditiva come la toxoplasmosi (21–23). A volte, la perdita dell’udito può svilupparsi nei primi mesi o anni di vita, come ad esempio accade con l’infezione da citomegalovirus. IMPORTANTI CONSIDERAZIONI L’insorgenza può essere accompagnata da altre caratteristiche della malattia: articolazioni di Clutton o molari di Mulberry per esempio, nei casi di sifilide congenita (24); conseguenza della sindrome zika congenita (25); o anomalie cardiache o oculari associate alla sindrome CHARGE nella rosolia congenita (23) a seconda della causa. STATISTICHE CORRELATE Le infezioni virali causano fino al 40% di tutte le perdite uditive congenite non genetiche (22). L’infezione da citomegalovirus è una causa comune, con conseguente perdita dell’udito nel 14% dei bambini nati da madri affette. Di questi bambini, il 3-5% ha una perdita uditiva bilaterale da moderata a profonda (26). Dei neonati con sindrome zika congenita, il 6-68% ha una perdita dell’udito. La perdita dell’udito è la conseguenza più comune dell’infezione da rosolia congenita, che si verifica nel 12-19% delle persone colpite (22). Tabella 1.1 Fattori causali che portano alla perdita dell’udito nel corso della vita PERIODO PRENATALE 15CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA IPOSSIA O ASFISSIA ALLA NASCITA (৴৹Ǿ৵৲) Mancanza di adeguata ossigenazione registrata al momento della nascita. Ciò si manifesta comunemente come un punteggio APGAR basso che viene valutato nei minuti immediatamente successivi alla nascita. INFLUENZA SULL’UDITO Una grave ipossia o anossia registrata al momento della nascita porta a un danno cellulare irreversibile nella coclea, con conseguente sordità neurosensoriale. CONSIDERAZIONI IMPORTANTI Il rischio è maggiore nei neonati che richiedono ventilazione assistita per insufficienza respiratoria neonatale. STATISTICHE CORRELATE Nessun dato disponibile. HYPERBILIRUBINEMIA (৴৹ ৵৳) Un aumento dei livelli sierici di bilirubina, anche comunemente noto come ittero. INFLUENZA SULL’UDITO L’ittero neonatale è un evento frequente ed è per lo più lieve e transitorio, senza conseguenze di lunga durata. Tuttavia, in alcuni neonati può verificarsi un danno neurologico indotto dalla bilirubina e il sistema uditivo è più sensibile ai suoi effetti. Tale danno si verifica più comunemente all’interno del nervo uditivo o tronco cerebrale, e spesso si manifesta come un disturbo dello spettro della neuropatia uditiva. CONSIDERAZIONI IMPORTANTI Il rischio è maggiore nei neonati con livelli di bilirubina superiori a 20 mg/dL. L’udito dei neonati prematuri è più suscettibile agli effetti tossici della bilirubina. STATISTICHE CORRELATE Nessun dato disponibile. BASSO PESO ALLA NASCITA (৳৺ ৴৹ ৵৴) Un peso alla nascita inferiore a 1.500 g, a causa di parto prematuro o malnutrizione materna. INFLUENZA SULL’UDITO Il basso peso alla nascita è un fattore di rischio ben identificato per la perdita dell’udito. È probabile che, sebbene il basso peso in sé non possa avere un impatto sull’udito, è comunemente associato a molteplici fattori di rischio, come farmaci ototossici, ipossia e iperbilirubinemia, che agiscono sinergicamente portando alla perdita dell’udito. CONSIDERAZIONI IMPORTANTI I neonati con peso alla nascita molto basso possono a volte avere una perdita dell’udito trasmissiva transitoria a causa di un versamento nell’orecchio medio. STATISTICHE CORRELATE Nessun dato disponibile. ALTRE MORBIDITÀ PERINATALI E LORO GESTIONE (৳৺  ৴৹ ৴৻) Include le infezioni perinatali e l’uso di farmaci ototossici. INFLUENZA SULL’UDITO Alcune infezioni che si verificano nel periodo neonatale possono essere dovute ad agenti patogeni che hanno un effetto diretto sul sistema uditivo (es. infezione da CMV e meningite). La perdita dell’udito può anche essere il risultato di medicinali epatotossici usati per trattare queste infezioni. CONSIDERAZIONI IMPORTANTI Si osserva che i neonati gestiti nelle unità di terapia intensiva neonatale (NICU) hanno una probabilità significativamente maggiore di sviluppare la perdita dell’udito, principalmente a causa delle condizioni sottostanti (ad es. prematurità o iperbilirubinemia); uso di medicinali ototossici e l’esposizione a livelli di rumore elevati nella UTIN (dove i livelli di decibel (dB) possono variare fino a 120) (33). STATISTICHE CORRELATE Nessun dato disponibile. Tabella 1.1 Fattori causali che portano alla perdita dell’udito nel corso della vita PERIODO PRENATALE 16 WORLD REPORT ON HEARING OTITE MEDIA* (৵৶Ǿ৶৲) Ciò include una serie di condizioni dell’orecchio suppurative e non suppurative caratterizzate da infiammazione dell’orecchio medio. INFLUENZA SULL’UDITO L’otite media cronica è comunemente associata a ipoacusia conduttiva da lieve a moderata a causa dell’interruzione della trasmissione delle vibrazioni sonore attraverso l’orecchio medio a causa del liquido accumulato, della rottura del timpano o dell’erosione degli ossicini dell’orecchio medio (ossa). Può, a volte, portare a ipoacusia neurosensoriale o grave. CONSIDERAZIONI IMPORTANTI L’otite media è una delle principali cause di visite mediche e morbidità, soprattutto nei bambini. L’otite media suppurativa può essere associata a complicazioni pericolose per la vita. STATISTICHE CORRELATE Si stima che 98,7 milioni di persone o più siano affette da perdita dell’udito (lieve o maggiore) come conseguenza dell’otite media suppurativa acuta e cronica. (41) *Ulteriori informazioni sono fornite a pagina 23. MENINGITE E ALTRE INFEZIONI (৳৺ ৶৴ ৶৵) Infezioni comuni nell’infanzia, come morbillo, parotite e meningite. Altri agenti patogeni che possono portare alla perdita permanente dell’udito includono: • Infezione Borrelia burgdorferi • Virus di Epstein-Barr • Haemophilus influenzae • Neisseria meningitidis (meningococco) • Enterovirus non polio • Plasmodium falciparum • Streptococcus pneumoniae (pneumococco) • Virus della varicella zoster (herpes zoster) INFLUENZA SULL’UDITO Il meccanismo non è sempre stato ben studiato e potrebbe variare dal versamento dell’orecchio medio, causato dall’infezione, al danno uditivo. Nella meningite, ad esempio, è probabile che la diffusione dell’infiammazione all’orecchio interno provochi labirintite e danni alle cellule cocleari. Un’altra possibilità è il danno al nervo uditivo dovuto a infiammazione o ischemia. CONSIDERAZIONI IMPORTANTI La perdita dell’udito varia in gravità e natura e può essere unilaterale o bilaterale. L’ipoacusia post-meningitica può essere unilaterale o bilaterale, grave o profonda e può deteriorarsi nel tempo. STATISTICHE CORRELATE La meningite può essere responsabile del 6% dell’ipoacusia neurosensoriale nei bambini (18). Complessivamente, si stima che il 14% delle persone infette da questi agenti patogeni possa soffrire di perdita dell’udito. Il 5% di queste ipoacusie può essere di tipo profondo. INFANZIA E ADOLESCENZA 17CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA MALATTIE CRONICHE (৸ ৺ ৶৶ ৶৷) Condizioni di salute comunemente riscontrate come ipertensione, diabete e adiposità centrale. INFLUENZA SULL’UDITO Non è ancora chiaro se la malattia cronica denoti una possibile relazione causale o solo una correlazione dovuta a processi biologici condivisi. Tuttavia, le persone con queste condizioni sono a maggior rischio di perdita dell’udito. CONSIDERAZIONI IMPORTANTI Le persone con condizioni di salute croniche come quelle elencate necessitano di vigilanza, con l’obiettivo di una precoce identificazione e riabilitazione. STATISTICHE CORRELATE Può contribuire alla prevalenza complessiva della perdita dell’udito. FUMO (৶৸Ǿ৶৻) Fumo di tabacco, comunemente inalato attraverso il fumare sigarette. L’esposizione al fumo di sigaretta aumenta chiaramente il rischio individuale di perdita dell’udito. INFLUENZA SULL’UDITO La perdita dell’udito potrebbe essere dovuta agli effetti antiossidanti e vascolari del fumo di sigaretta; all’effetto ototossico diretto che può influenzare la neurotrasmissione degli stimoli uditivi. CONSIDERAZIONI IMPORTANTI Include le persone esposte al fumo passivo. È interessante notare che l’eccesso di rischio di perdita dell’udito scompare in un periodo relativamente breve dopo aver smesso di fumare. STATISTICHE CORRELATE Può contribuire alla prevalenza complessiva della perdita dell’udito. OTOSCLEROSI (৷৲Ǿ৷৴) Crescita ossea anormale all’interno dell’orecchio per causa sconosciuta, con possibili influenze genetiche e ambientali. INFLUENZA SULL’UDITO La crescita ossea anormale colpisce comunemente la staffa (uno degli ossicini dell’orecchio), ma in alcuni casi si estende anche alla coclea. Può causare ipoacusia trasmissiva, mista o neurosensoriale. CONSIDERAZIONI IMPORTANTI Sebbene non sia una malattia comune, l’otosclerosi spesso può essere gestita efficacemente attraverso mezzi chirurgici e non, compreso l’uso di apparecchi acustici. INFANZIA E ADOLESCENZA 18 WORLD REPORT ON HEARING DEGENERAZIONE SENSORIALE CORRELATA ALL’ETÀ* (৸ ৺ ৷৵Ǿ৷৹) Alterazioni degenerative delle strutture all’interno dell’orecchio, associate all’invecchiamento. Oltre il 65% degli adulti sopra i 60 anni soffre di perdita dell’udito. INFLUENZA SULL’UDITO I cambiamenti degenerativi influenzano la capacità dell’orecchio interno e dei centri superiori di elaborare e discriminare i segnali acustici, presentati come difficoltà nell’udire alcuni suoni e discriminazione del parlato. CONSIDERAZIONI IMPORTANTI La perdita dell’udito legata all’età è una condizione multifattoriale influenzata da fattori genetici che determinano la velocità e l’estensione della degenerazione neurale, condizioni dell’orecchio preesistenti, malattie croniche, esposizione al rumore, uso di farmaci ototossici e stili di vita. STATISTICHE CORRELATE Le stime del Global Burden of Disease per il 2019 suggeriscono che oltre il 65% delle persone di età superiore ai 60 anni sperimentano un qualche grado di perdita dell’udito, e questo è di grado moderato o superiore in quasi il 25% di questa fascia di età. Gli studi dimostrano che la prevalenza della perdita dell’udito raddoppia negli Stati Uniti durante ogni decennio di vita, dalla seconda alla settima decade (58, 59), con gli aumenti più marcati che si verificano nelle persone di età superiore agli 80 anni (6, 48). *Ulteriori informazioni sono fornite a pagina 28. PERDITA UDITIVA SENSORIALE IMPROVVISA (SSNHL) (৸৲ ৸৳) Più che una causa di ipoacusia, la perdita dell’udito neurosensoriale improvvisa è legata all’insorgenza della perdita dell’udito. FATTORI DI RISCHIO NON MODIFICABILI (৶৷ ৸৴ ৸৵) Include: • Sindromi associate a perdita progressiva dell’udito, come la sindrome di Usher e la neurofibromatosi; e disturbi neurodegenerativi, ad es. Atassia di Hunter, Friedreich • Mutazioni genetiche che si manifestano comunemente in età avanzata (cioè dall’infanzia alla vecchiaia) • Genere • Razza INFLUENZA SULL’UDITO • Il meccanismo dei fattori genetici varia a seconda del gene colpito e della sua espressione o della relativa sindrome. • Gli uomini sono più inclini alla perdita dell’udito, principalmente a causa del loro maggiore impegno nelle attività associate alla perdita dell’udito indotta dal rumore (64, 65) e per l’influenza positiva degli estrogeni sulle funzioni uditive tra le donne. Poiché la sensibilità uditiva è correlata al livello di estrogeni, le donne sono più protette dalla perdita dell’udito fino alla menopausa (66). • Le differenze razziali nella pigmentazione cocleare sono state associate al rischio di perdita dell’udito. Pigmentazione della melanina - significativamente più abbondante nella coclea degli afro-americani rispetto a quelli dei caucasici - è alla base del ridotto rischio di perdita dell’udito correlata all’età nei soggetti di origine afroamericana (67). CONSIDERAZIONI IMPORTANTI In letteratura sono descritti più di 100 geni e loro mutazioni note associate alla perdita dell’udito. Molti altri sono noti per causare la perdita dell’udito sindromica. L’insorgenza tardiva, o progressiva, della perdita dell’udito associata ad alcune di queste condizioni viene comunemente ignorata durante lo screening della prima infanzia. STATISTICHE CORRELATE Nessun dato disponibile. FATTORI NEL CORSO DELLA VITA 19CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA TAPPO DI CERUME (৸৺Ǿ৹৳) Il cerume è una secrezione prodotta dalle ghiandole ceruminose dell’orecchio esterno. È di natura appiccicosa, impermeabile e protettiva, con proprietà battericide e fungicide. Il cerume intrappola e rimuove le cellule morte della pelle, la polvere e altri materiali dall’esterno dell’orecchio. A volte, il cerume si accumula e si secca, formando un duro tappo di cerume nell’orecchio esterno. INFLUENZA SULL’UDITO Il cerume può occludere completamente il condotto uditivo, portando alla perdita dell’udito a causa dell’ostruzione meccanica delle onde sonore. Ciò può portare a piccoli spostamenti (5-10 dB) nelle soglie uditive (69). L’effetto uditivo dell’occlusione del cerume è più marcato nelle persone che hanno già una perdita uditiva di base, poiché anche un piccolo danno aggiuntivo può causare problemi significativi nel funzionamento (69). Inoltre, la perdita dell’udito dovuta al cerume può peggiorare improvvisamente, se l’acqua viene assorbita dell’acqua, ad es. durante il nuoto o la doccia (69). CONSIDERAZIONI IMPORTANTI L’occlusione da cerume è aggravata dall’uso di cotton fioc (ad es. Q-tips) che sono comunemente usati per “pulire” il condotto uditivo. L’uso di ausili può ostacolare il normale movimento ed estrusione della cerume, portando al suo accumulo. STATISTICHE CORRELATE La prevalenza dei tappi di cerume varia tra i gruppi di età, dal 7 al 35%. La prevalenza è più alta negli anziani, con il 57% che potrebbe essere interessato, molto probabilmente a causa di un aumento della secchezza e della caduta della pelle. Circa il 10% dei bambini e il 5% degli adulti hanno tappi di cerume. Più del 50% degli adulti anziani possono esserne affetti. TRAUMA ALL’ORECCHIO O ALLA TESTA (৹৴ ৹৵) Perdita dell’udito come conseguenza di un trauma all’orecchio e alla testa. Tale trauma può essere accidentale, intenzionale o iatrogeno (dovuto a un intervento chirurgico all’orecchio o alla testa). INFLUENZA SULL’UDITO L’impatto sull’udito può essere causato da: • Interruzione del meccanismo di conduzione dell’orecchio: lesioni sopra l’orecchio (ad esempio schiaffi, cadute sull’orecchio, inserimento di oggetti nel condotto uditivo) possono causare la perforazione della membrana timpanica (timpano) o la dislocazione degli ossicini all’interno dell’orecchio. Questo può portare a un tipo di ipoacusia conduttiva che spesso può essere corretta chirurgicamente. • Lesione cocleare o neurale fratture dell’osso temporale o lesioni cerebrali possono provocare traumi del nervo uditivo con conseguente ipoacusia di tipo neurosensoriale. CONSIDERAZIONI IMPORTANTI L’ipoacusia traumatica può essere parte del politrauma. La comunicazione con i pazienti politraumatizzati con ipoacusia richiede un’attenzione particolare. STATISTICHE CORRELATE Nessun dato disponibile. FATTORI NEL CORSO DELLA VITA 20 WORLD REPORT ON HEARING RUMORE FORTE/SUONI FORTI* (৷৷ ৸৶ ৹৶Ǿ৺৹) Esposizione a rumori forti o suoni forti, che includono: • Rumore professionale • Suoni ricreativi • Rumore ambientale INFLUENZA SULL’UDITO L’esposizione prolungata o regolare a suoni forti può causare danni permanenti alle cellule ciliate e ad altre strutture all’interno della coclea, con conseguente perdita dell’udito irreversibile. La gamma delle alte frequenze è interessata per prima. L’esposizione continua porta alla progressiva della perdita dell’udito. CONSIDERAZIONI IMPORTANTI Oltre alla perdita dell’udito, l’esposizione al rumore può portare ad altri problemi di salute causati dal rumore come l’insonnia o le malattie cardiovascolari. STATISTICHE CORRELATE Si stima che circa il 16% (7-21% in diverse regioni) della perdita dell’udito negli adulti derivi dall’esposizione a rumore eccessivo sul posto di lavoro (76), responsabile di oltre 4 milioni di anni di vita vissuti con disabilità (DALY). Delle persone di età compresa tra 12 e 35 anni, il 50% è a rischio di perdita dell’udito a causa dell’esposizione a livelli di suoni non sicuri in ambienti ricreativi. *Ulteriori informazioni sono fornite a pagina 25. MEDICINALI OTOTOSSICI (৺৺Ǿ৻৲) Farmaci potenzialmente ototossici (di cui esistono più di 600 categorie). Quelli più comunemente usati nella pratica clinica includono: • antibiotici aminoglicosidici e macrolidi (es. gentamicina, streptomicina) • antimalarici chinolinici (chinino) • antineoplastici analoghi del platino (es. cisplatino) • diuretici dell’ansa (ad es. furosemide, acido acetilsalicilico) INFLUENZA SULL’UDITO La perdita dell’udito può derivare dagli effetti cocleotossici o neurotossici dei medicinali ototossici. In molti casi, il danno è alle cellule ciliate cocleari e provoca la perdita dell’udito neurosensoriale, che di solito è permanente. CONSIDERAZIONI IMPORTANTI L’insorgenza e la gravità della perdita dell’udito ototossica sono comunemente dose-dipendenti e cumulative, e sono anche influenzate da molti altri fattori, come età, sesso, predisposizione genetica, condizioni di comorbidità, assunzione di alcol, fumo, dieta, esercizio fisico, stress, farmaco, via di somministrazione, durata della terapia, esposizione ad altre sostanze chimiche ototossiche, esposizione al rumore e ipoacusia preesistente. STATISTICHE CORRELATE Si stima che l’incidenza della perdita dell’udito ototossica sia del 63% con gli aminoglicosidi e del 6-7% con la furosemide. È stato dimostrato che il cisplatino causa acufene e perdita dell’udito nel 23-50% degli adulti e fino al 60% dei bambini che lo assumono. Fino al 50% di quelli trattati con medicinali iniettabili (ad es. Amikacina e Streptomicina) per la tubercolosi resistente ai farmaci (DR-TB), potrebbe sviluppare una perdita permanente dell’udito FATTORI NEL CORSO DELLA VITA 21CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA PRODOTTI CHIMICI OTOTOSSICI CORRELATI AL LAVORO (৻৳ ৻৴) Sostanze chimiche utilizzate in molti luoghi di lavoro, in particolare quelle relative alla stampa, alla pittura, alla costruzione di barche, all’edilizia, alla produzione di colla, ai prodotti in metallo, ai prodotti chimici, al petrolio, ai prodotti in pelle, alla fabbricazione di mobili, all’agricoltura e all’estrazione mineraria. I prodotti chimici comunemente usati includono: • Solventi aromatici (es. toluene) • Solventi non aromatici (es. tricloroetilene, a detergente e sgrassante) • Nitrili (es. quelli utilizzati per la preparazione delle resine melamminiche) • Asfissianti (es. monossido di carbonio e acido cianidrico presenti nei gas di scarico) • Metalli e composti metallici (ad es. piombo e mercurio presenti nella produzione di batterie, plastica, vernici e benzina) • Idrocarburi alogenati (es. policlorobifenili presenti nei fluidi refrigeranti) INFLUENZA SULL’UDITO Come notato sopra, gli effetti cocleotossici e neurotossici di queste sostanze chimiche sono la causa più probabile della perdita dell’udito. CONSIDERAZIONI IMPORTANTI I lavoratori possono essere esposti contemporaneamente a rumore, sostanze chimiche multiple e vibrazioni, che agiscono sinergicamente fino a causare la perdita dell’udito (93). Inoltre, fattori come l’età, la suscettibilità genetica, le condizioni di comorbidità e l’assunzione di alcol, tra gli altri, possono influenzare gli effetti di questi agenti. STATISTICHE CORRELATE Sono disponibili dati limitati su questo argomento. Tuttavia, si stima che in Europa l’11% dei lavoratori abbia riferito di essere esposto a solventi e diluenti, mentre il 14% ha riferito di aver maneggiato sostanze chimiche (91). CARENZE NUTRIZIONALI (৻৶Ǿ৻৻) Denutrizione generalizzata o carenze di alcuni macronutrienti o micronutrienti, tra cui: • Vitamina A • Zinco • Ferro INFLUENZA SULL’UDITO La perdita dell’udito può verificarsi a causa di: • Otite media, come nel caso delle carenze di vitamina A e zinco • Effetti sulle vie uditive centrali, come con la carenza di ferro. CONSIDERAZIONI IMPORTANTI Le carenze nutrizionali rappresentano un fattore di rischio modificabile per la perdita dell’udito con implicazioni potenzialmente importanti per gli ambienti con poche risorse, dove si trova la maggior parte del carico globale di soggetti con perdita dell’udito. STATISTICHE CORRELATE Mancano dati in questo campo, ma le prove emerse indicano un chiaro legame tra alimentazione e perdita dell’udito. Un ampio studio riguardante gruppi nel sud del Nepal ha dimostrato che il deperimento della prima infanzia e l’arresto della crescita erano costantemente associati a un rischio di perdita dell’udito di 1,8-2,2 volte maggiore nella prima età adulta. FATTORI NEL CORSO DELLA VITA 22 WORLD REPORT ON HEARING INFEZIONI VIRALI (৴৴ ৶৴) Virus come il virus dell’immunodeficienza umana (HIV); Herpes simplex di tipo 1 e 2; Ebola; virus di Lassa; e virus del Nilo occidentale. INFLUENZA SULL’UDITO La perdita dell’udito può svilupparsi a causa dell’esposizione in utero o a causa dell’esposizione più tardi nella vita. La patologia sottostante e la natura della perdita dell’udito possono variare e possono essere dovute a: • Effetti sulla via uditiva • Otite media cronica associata • Trattamento con medicinali potenzialmente ototossici CONSIDERAZIONI IMPORTANTI Queste infezioni virali possono verificarsi in diverse fasi della vita. Il tipo e la gravità della perdita dell’udito ad essi associata varia e dipende dalla natura della patologia sottostante. STATISTICHE CORRELATE Si stima che il 14-49% dei pazienti affetti da HIV potrebbe subire la perdita dell’udito come conseguenza della malattia o del trattamento con farmaci potenzialmente ototossici. Circa il 5,7% dei sopravvissuti all’Ebola e l’8,5% di quelli con febbre di Lassa soffrono di ipoacusia. ALTRE CONDIZIONI DELL’ORECCHIO Malattia di Meniere, schwannoma vestibolare, malattie autoimmuni e altre, che si riscontrano nella pratica clinica e sono cause di perdita dell’udito. INFLUENZA SULL’UDITO Varia in base alla natura e alla gravità della malattia. CONSIDERAZIONI IMPORTANTI Nessun dato disponibile. STATISTICHE CORRELATE Nessun dato disponibile. FATTORI NEL CORSO DELLA VITA 23CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA OTITE MEDIA ACUTA (AOM) OTITE MEDIA CRONICA SUPPURATIVA (CSOM) OTITE MEDIA CRONICA NON SUPPURATIVA (NSOM CRONICO) OTITE MEDIA NON SUPPURATIVA (NSOM) PERFORAZIONE FATTORI CASUALI: Otite media (34–40) Il termine “otite media” (OM) riflette una serie di condizioni, tutte caratterizzate da infiammazione dell’orecchio medio. Sebbene soggetti di qualsiasi età possano sviluppare l’otite media, i bambini sono più comunemente colpiti. Le diverse forme di OM includono: • Otite media suppurativa (condizioni infettive): – Otite media acuta suppurativa (OMA), inclusa l’otite media acuta ricorrente – Otite media cronica suppurativa (CSOM). • Otite media non suppurativa (NSOM) inclusa NSOM acuta e cronica. NSOM è sinonimo di otite media con versamento (OME). L’otite media acuta (OMA) è un versamento dell’orecchio medio accompagnato da un’infezione acuta. Tale infezione può provocare una perforazione della membrana timpanica, con possibile sviluppo di otite media cronica suppurativa (CSOM). La risoluzione incompleta dell’OMA è spesso seguita da un periodo di otite media non suppurativa (NSOM). Allo stesso tempo, la NSOM cronica può essere essa stessa un fattore di rischio per l’AOM. Quindi tutte le condizioni sono correlate e un individuo con otite media può sperimentare le sue diverse forme in momenti diversi in base a una varietà di influenze (Figura 1.3). Figura 1.3 Tipi di otite media e loro interrelazione L’otite media pone una grande preoccupazione a causa della sua: 24 WORLD REPORT ON HEARING Ogni anno, l’infezione acuta dell’orecchio medio colpisce oltre 700 milioni di persone, per lo più bambini di età inferiore a 5 anni (40). • Alta incidenza e prevalenza: sebbene l’infezione possa verificarsi in qualsiasi momento della vita, l’incidenza più elevata si riscontra nei bambini di età inferiore ai cinque anni. I dati disponibili indicano un tasso di incidenza del 10,85% di OMA (40) - cioè più di 700 milioni di casi ogni anno, la maggior parte dei quali sono bambini di questa fascia di età. Il tasso di incidenza varia a seconda delle regioni e dei paesi: dal 3,64% dell’Europa centrale a oltre il 43% in alcune parti dell’Africa subsahariana. La variazione tra paesi e regioni può essere attribuita a predisposizioni genetiche, nonché a fattori di rischio modificabili come allergie, infezioni del tratto respiratorio superiore, esposizione al fumo passivo, mancanza di servizi igienico-sanitari, denutrizione e basso stato socioeconomico (36, 38, 100). Il tasso di incidenza della CSOM è del 4,76%, ovvero più di 30 milioni di casi ogni anno e una prevalenza puntuale stimata superiore a 200 milioni di casi a livello globale (40). Circa il 22,6% del carico di CSOM si verifica nei bambini di età inferiore ai cinque anni. In termini di prevalenza di NSOM, è ben documentato che fino all’80% dei bambini con età fino a quattro anni ha avuto almeno un episodio (35). Inoltre, alcune popolazioni indigene sono predisposte all’otite media (38, 101-103). Tra loro i nativi americani, popolazioni aborigene dell’Australia e popolazioni indigene nelle regioni circumpolari come Canada, Alaska e Groenlandia. Ad esempio, il governo australiano ha documentato che nei bambini indigeni australiani di età compresa tra 0 e 5 anni, il tasso di prevalenza dell’otite media è superiore al 90%; e che oltre la metà di tutti i bambini indigeni ha sperimentato un qualche grado di perdita dell’udito (104). • Associazione con la perdita dell’udito: le infezioni dell’orecchio sono una delle cause comuni di perdita dell’udito nell’infanzia (20). Anche se la prevalenza dell’otite media si riduce con l’età, il suo impatto sull’udito è evidente nel corso della vita e la perdita dell’udito associata all’otite media persiste in età avanzata in tutte le regioni del mondo (40). Si stima che a livello globale più di 3 persone su 1.000 soffrano di perdita dell’udito dovuta a otite media (40) di varia gravità. I casi di NSOM sono solitamente associati a una lieve perdita dell’udito, che è spesso l’unico sintomo e può passare inosservato. Nonostante il grado “lieve” di perdita dell’udito, l’impatto della NSOM sulla percezione del linguaggio è significativo, portando spesso a risultati escolastici negativi (105). • Possibile causa di complicazioni potenzialmente letali: si stima che ogni anno 21.000 persone muoiano a causa di complicazioni dell’otite media, come mastoidite, meningite e ascesso cerebrale (40). È dimostrato che la mortalità è più alta agli estremi della vita, cioè nei primi cinque anni di vita e in quelli di età superiore ai 75 anni. Geograficamente, i tassi di mortalità sono più bassi nelle regioni ad alto reddito del mondo; i tassi più elevati si riscontrano nei paesi oceanici e in alcune parti dell’Africa subsahariana. 25CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA FATTORI CASUALI: Esposizione a suoni forti e rumore forte L’esposizione a suoni forti mette bambini e adulti a rischio non solo di perdita dell’udito, ma anche di altri problemi di salute causati dal rumore, come l’insonnia e le malattie cardiovascolari (64). Tipicamente, l’intensità del suono5 superiore a 80 dB, ascoltata per periodi superiori a 40 ore alla settimana può portare alla perdita dell’udito, danneggiando le cellule ciliate sensoriali all’interno dell’orecchio interno (82). Maggiore è il livello del suono e maggiore è la durata, maggiore è il rischio di perdita dell’udito (82, 106). 6 I suoni forti possono essere riscontrati sul posto di lavoro, negli ambienti di vita quotidiani e sono comunemente vissuti come parte integrante delle attività ricreative. Le situazioni che presentano un rischio di perdita dell’udito includono: • Ambiti occupazionali: alti livelli di rumore nell’ambiente professionale rimangono un problema in tutte le regioni del mondo (77). Negli Stati Uniti d’America (USA), ad esempio, più di 30 milioni di lavoratori sono esposti a rumori pericolosi (87). L’Agenzia europea per la sicurezza e la salute sul lavoro7 stima che il 25-33% della forza lavoro in Europa è esposto a rumori di alto livello per almeno un quarto dell’orario di lavoro (75). In altre parti del mondo, i dati sulla perdita dell’udito indotta dal rumore sono scarsi, ma le prove disponibili suggeriscono che i livelli medi di rumore sono ben al di sopra dei livelli raccomandati (77, 107) e potrebbero essere in aumento a causa della crescente industrializzazione che non è sempre accompagnata da misure di protezione. È più probabile che i lavoratori della cantieristica navale, delle forze armate, dell’industria meccanica, manifatturiera, edile e delle costruzioni, delle fonderie per la lavorazione del legno, dell’industria mineraria, dell’industria alimentare e delle bevande, dell’agricoltura e dell’intrattenimento siano esposti ad alti livelli di rumore (74-76). La vibrazione simultanea o l’esposizione a sostanze chimiche (ad es. solventi, piombo) aumentano gli effetti dannosi del rumore. • Ambienti ricreativi: il rischio di perdita dell’udito si riscontra anche quando le persone si espongono a livelli sonori elevati in ambienti ricreativi (79). Le attività ricreative rumorose, in particolare l’uso di armi da fuoco, possono causare gli stessi danni all’udito dell’esposizione al rumore professionale (74). Ascolto prolungato di musica ad alto volume tramite dispositivi audio personali (ad esempio lettori di musica utilizzati con cuffie/auricolari) aumenta il rischio di sordità e comporta un peggioramento delle soglie audiometriche (80). 5 L’intensità del suono è misurata in decibel, rappresentati come “dB”. 6 Il principio di uguale energia afferma che l’effetto totale del suono è proporzionale alla quantità totale di energia sonora ricevuta dall’orecchio, indipendentementedella distribuzione di tale energia nel tempo e che la quantità di energia raddoppi per ogni 3 dB di aumento dell’intensità del suono. 7 Cfr.: https://osha.europa.eu/en. Il rumore negli eventi sportivi può raggiungere livelli fino a 135d% © D re am st im e ph ot os 26 WORLD REPORT ON HEARING Si stima che negli USA, 21 milioni di adulti (19,9%) che hanno riferito nessuna esposizione a rumori forti o rumore molto forte al lavoro hanno mostrato prove di perdita di udito indotto da rumore (108). Chi utilizza regolarmente dispositivi audio portatili può esporsi allo stesso livello di suono (in 15 minuti di musica a 100 dB) che un lavoratore dell’industria riceverebbe in una giornata di 8 ore a 85 dB. Dato che l’intervallo di volume di un tipico ascoltatore è compreso tra 75 dB e 105 dB (64), ciò è motivo di preoccupazione. L’OMS stima che oltre il 50% delle persone di età compresa tra 12 e 35 anni ascolta musica sui propri dispositivi audio a volumi che rappresentano un rischio per l’udito. Tra coloro che frequentano luoghi di intrattenimento, quasi il 40% è a rischio di perdita dell’udito (84). • Fattori ambientali (diversi dagli ambienti occupazionali e ricreativi): i suoni forti si incontrano abitualmente nell’ambiente quotidiano. Esempi comuni includono il rumore del traffico o degli elettrodomestici. Nel complesso, l’esposizione ambientale al rumore è per lo più inferiore ai livelli richiesti per lo sviluppo della perdita irreversibile dell’udito. Tuttavia, le persone esposte a tali livelli di rumore (non sufficienti a causare la perdita dell’udito) possono sperimentare altri effetti sulla salute, incluso un maggior rischio di cardiopatia ischemica, ipertensione, disturbi del sonno, fastidio e disturbi cognitivi (81, 82). CASE STADY I suoni forti possono causare danni permanenti Matt Brady, uno studente universitario di 22 anni, ha subito danni permanenti all’udito per aver ascoltato musica ad alto volume mentre si allenava su un tapis roulant. Proprio come in un giorno normale, Matt si stava allenando e ascoltava musica usando gli auricolari quando ha avvertito dolore alle orecchie e alla testa, seguito da una perdita dell’udito duratura che ha influito sulla sua vita sociale e scolastica. Ci è voluto quasi un anno e il consulto di più medici per capire l’associazione tra la perdita di udito e l’abitudine di ascoltare musica ad alto volume. Matt ora ha difficoltà permanenti nell’ascolto e trova la conversazione impegnativa in situazioni con rumore di fondo. Avendo imparato a proprie spese, Matt Brady ora sostiene i comportamenti di ascolto sicuro perchè anche le altre persone non subiscano il danno subito da lui (109). • Sviluppo della perdita dell’udito causata dal rumore: è ben noto che il rumore danneggia le strutture all’interno della coclea in modo quantità-effetto, ovvero maggiore è la quantità di esposizione, maggiore è l’impatto (83, 84). Qualche volta, tale danno può manifestarsi solo come difficoltà a comprendere il parlato in un ambiente rumoroso - un tipico disturbo associato alla perdita dell’udito causata dal rumore (55). 27CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA Inoltre, l’esposizione al rumore è comunemente associata all’acufene, la sensazione di ronzio nell’orecchio e il fenomeno noto come “perdita nascosta dell’udito” (85). • Acufene: (tinnitus) deriva dal verbo latino tinnire (squillare) e si riferisce alla percezione cosciente di una sensazione uditiva in assenza di uno stimolo esterno corrispondente (110). L’acufene è comunemente il risultato dell’esposizione al rumore e può accompagnare o verificarsi in assenza di perdita dell’udito clinicamente evidente (85). La ricerca mostra che i lavoratori esposti al rumore hanno maggiori probabilità di essere vittime di acufene (83). L’acufene può anche essere causato da altre condizioni uditive e non uditive. L’insorgenza, la percezione e l’impatto dell’acufene possono essere influenzati da una serie di fattori psicologici, come ansia e depressione (111). La prevalenza nella popolazione generale varia dal 5,1% al 42,7%, mentre l’acufene fastidioso si riscontra nel 3-30% della popolazione (112). • Perdita nascosta dell’udito: si riferisce alla condizione in cui un individuo manifesta sintomi comuni associati a danni uditivi correlati al rumore come difficoltà nell’udire il rumore, acufene e iperacusia. Tuttavia, come suggerisce il nome, la perdita dell’udito nascosta (HHL) non è rilevabile con l’audiometria a tono puro, che mostra la normale sensibilità dell’udito a 250-8.000 Hz. La condizione è attribuita alla distruzione delle connessioni sinaptiche tra le cellule ciliate e i neuroni cocleari (sinaptopatia cocleare) che si verifica molto prima che le cellule ciliate vengano danneggiate e come conseguenza dell’esposizione al rumore (85, 113). È probabile che molte persone soffrano di HHL e che questa patologia si presenti nelle fasce di età più giovani a causa della crescente esposizione al rumore ricreativo (85). Si suggerisce inoltre che i cambiamenti causati dall’esposizione al rumore, anche nei primi anni di vita, rendano le orecchie molto più vulnerabili all’invecchiamento e accelerino l’insorgenza della perdita dell’udito legata all’età (86). Indipendentemente dalla sua insorgenza, la progressione del danno uditivo irreversibile correlato al rumore è implacabile finché l’esposizione continua. CASE STADY Studio dell’impatto a lungo termine dell’esposizione al suono: The Apple Hearing Study* Per comprendere meglio l’esposizione al suono a lungo termine e il suo impatto sulla salute dell’udito, nel 2019 è stato avviato uno studio su larga scala attraverso la collaborazione tra l’Università del Michigan, USA e Apple**. I risultati di questo studio aiuteranno a guidare la politica di salute pubblica e i programmi di prevenzione progettati per proteggere e promuovere la salute dell’udito sia negli Stati Uniti che a livello globale. * https://sph.umich.edu/applehearingstudy/ **https://clinicaltrials.gov/ct2/show/NCT04172766 28 WORLD REPORT ON HEARING FATTORI CASUALI: Fattori legati all’età Data la sua elevata prevalenza nella comunità, la ipoacusia legata all’età (ARHL) - nota anche come presbiacusia - rappresenta il maggior onere sociale ed economico derivante dalla perdita dell’udito nel corso della vita e si prevede che aumenterà con gli attuali cambiamenti demografi ci (vedere la Sezione 3 ). Le stime attuali suggeriscono che oltre il 42% delle persone con qualsiasi grado di perdita dell’udito ha un’età superiore ai 60 anni. A livello globale, la prevalenza del defi cit uditivo (di gravità moderata o superiore) aumenta esponenzialmente con l’età, passando dal 15,4% tra le persone di età superiore ai 60 anni, al 58,2% tra le persone di età superiore ai 90 anni. Questa tendenza è osservata in tutte le regioni dell’OMS. La fi gura 1.4 mostra una prevalenza tra le regioni del 10,9-17,6% tra gli individui di età compresa tra 60 e 69 anni, che aumenta al 41,9- 51,2% tra quelli di età compresa tra 80 e 89 anni e raggiunge il 52,9-64,9% in quelli di età superiore ai 90 anni. Figura 1.4 Prevalenza della perdita dell’udito (di grado moderato o superiore) negli anziani da decenni Regione Africana Regione Mediterranea Orientale Regione Europea Regione delle Americhe Regione del Sud-Est Asiatico Regione Pacifi co Orientale Prevalenza (%) 29CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA Lo sviluppo della presbiacusia (ARHL) può essere attribuito a insulti fisici e ambientali, combinati con predisposizioni genetiche e una maggiore vulnerabilità a fattori di stress fisiologici e comportamenti modificabili dello stile di vita sperimentati nel corso della vita (6). Questi fattori includono l’esposizione a rumori forti, farmaci o sostanze chimiche ototossiche, fumo e abitudini alimentari, nonché condizioni croniche, come le malattie cardiache. Mentre i fattori che causano la presbiacusia in un individuo non possono essere separati, la natura aggiuntiva di tali fattori, combinata con incidenza biologica, aumenta il rischio di perdita dell’udito. Adottare comportamenti preventivi, come indicato in precedenza, e fare scelte di vita sane sotto forma di una buona alimentazione, esercizio fisico ed evitare il fumo, può ridurre il rischio di perdita dell’udito in età avanzata. Gli impatti della perdita dell’udito non trattata che insorge nell’età adulta provocano il ritiro sociale, la perdita di produttività dovuta al pensionamento anticipato e i costi delle cure informali, il declino mentale e fisico (114-117). Senza un intervento tempestivo, la presbiacusia è associata a una qualità della vita più scadente e a un’ampia gamma di effetti negativi sulla comunicazione delle persone colpite (118). Gli sforzi preventivi, come descritto di seguito, sono supportati da solide strategie di salute pubblica (delineate nella Sezione 2) e possono ridurre l’insorgenza della presbiacusia. Inoltre, la diagnosi precoce della perdita dell’udito e gli interventi appropriati per affrontarla possono mitigare molti degli effetti avversi associati (119-121). 1.2.3 FATTORI DI PROTEZIONE E PREVENZIONE DELLA PERDITA DELL’UDITO Vari fattori e interventi possono prevenire o affrontare le cause sopra menzionate e quindi prevenire l’insorgenza della perdita dell’udito o ritardarne la progressione. Di seguito sono fornite informazioni dettagliate sulle pratiche di cura dell’orecchio e dell’udito (EHC) che possono prevenire le malattie dell’orecchio e mantenere la capacità uditiva. Le azioni preventive più rilevanti che possono essere intraprese dagli individui a livello personale nel corso della vita per mantenere la propria capacità uditiva sono riportate nella Tabella 1.2 (122-124). Le azioni preventive di sanità pubblica, non incluse nella tabella, sono descritte nella Sezione 2 del presente Rapporto. Tabella 1.2 Fattori protettivi e preventivi per la perdita dell’udito nel corso della vita 30 WORLD REPORT ON HEARING NUTRIZIONE MATERNA (৳৴৷Ǿ৳৴৻) Alimentazione materna equilibrata durante la gravidanza. PROTEZIONE CONTRO LA PERDITA DELL’UDITO La nutrizione materna influenza il peso alla nascita del bambino e la sua salute generale. Il basso peso alla nascita e le carenze di micronutrienti sono legate alla perdita dell’udito congenita che può essere evitata. CONSIDERAZIONI IMPORTANTI La malnutrizione materna può essere ridotta al minimo attraverso interventi dietetici appropriati che affrontino queste carenze. IGIENE MATERNA (৳৵৲Ǿ৳৵৴) Include pratiche semplici come: • lavaggio frequente delle mani; • lavaggio accurato e pelatura di frutta e verdura; • evitare il contatto non protetto con terra e escrementi di gatti; • cuocere gli alimenti a temperature sicure. PROTEZIONE CONTRO LA PERDITA DELL’UDITO Alcune infezioni che portano alla perdita dell’udito congenita, come le infezioni da citomegalovirus e la toxoplasmosi, possono essere prevenute attraverso una buona igiene e cura. CONSIDERAZIONI IMPORTANTI Nessun dato disponibile. ALLATTAMENTO (৳৵৵) Inizio precoce dell’allattamento al seno e allattamento esclusivo durante i primi mesi di vita, in linea con le raccomandazioni dell’OMS (134). PROTEZIONE CONTRO LA PERDITA DELL’UDITO Offre una protezione significativa contro l’otite media acuta (AOM), specialmente durante i primi anni di vita (133). Poiché l’otite media cronica è comunemente una conseguenza dell’OMA, la promozione dell’allattamento al seno può aiutare a proteggere i bambini dalla CSOM con la sua conseguente perdita dell’udito e possibili complicazioni. CONSIDERAZIONI IMPORTANTI Nessun dato disponibile. BUONA IGIENE DELL’ORECCHIO* (৳৴৵ ৳৵৷ ৳৵৸) Include pratiche sicure come: • evitare l’uso di cotton fioc per l’orecchio; • non inserire/instillare oggetti o liquidi nell’orecchio; • evitare l’uso di rimedi casalinghi per le comuni condizioni dell’orecchio; • richiedere cure mediche immediate per curare raffreddori comuni, dolore alle orecchie/secrezione/ emorragie o perdita dell’udito. PROTEZIONE CONTRO LA PERDITA DELL’UDITO Tali pratiche possono prevenire il verificarsi o l’aggravamento dell’accumulo di cerume o dell’otite media. CONSIDERAZIONI IMPORTANTI La maggior parte delle persone non ha bisogno di un programma regolare per prevenire l’accumulo di cerume. Alcuni potrebbero ritenere necessario eseguire occasionalmente una procedura di pulizia. Il cerume si forma naturalmente dal corpo e aiuta a proteggere la pelle del condotto uditivo e ad uccidere i germi. Un medico può trovare un eccesso di cerume a un check-up generale regolarmente programmato ed eseguire una procedura di pulizia (71). FATTORI NEL CORSO DELLA VITA 31CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA EVITARE IL TABACCO Evitare tutte le forme di consumo di tabacco, nonché l’esposizione al fumo passivo. PROTEZIONE CONTRO LA PERDITA DELL’UDITO Data la relazione tra consumo di tabacco, malattie croniche e perdita dell’udito, evitare il tabacco può mitigare i rischi associati al suo uso. Il fumo passivo è associato all’otite media, che può essere evitata specialmente nei bambini. CONSIDERAZIONI IMPORTANTI Nessun dato disponibile. PROTEZIONE CONTRO LE LESIONI DELLA TESTA O DELL’ORECCHIO (৳৵৹ ৳৵৺) Misure comuni di protezione, quali: • Uso del casco durante la guida delle due ruote • Evitare schiaffi, soprattutto sopra l’orecchio PROTEZIONE CONTRO LA PERDITA DELL’UDITO Poiché le lesioni dirette all’orecchio o alla testa possono causare la perdita dell’udito, è essenziale evitare questo fattore di rischio. CONSIDERAZIONI IMPORTANTI Schiaffeggiare i bambini è una forma di punizione comunemente praticata in molte parti del mondo. Oltre agli effetti psicologici per tutta la vita, schiaffeggiare l’orecchio può anche portare a timpani perforati con potenziale di otite media e perdita dell’udito. BUONA NUTRIZIONE (৻৶ ৳৴৹ ৳৴৻ ৳৵৻) L’assunzione di una dieta equilibrata, completa di macronutrienti essenziali e micronutrienti in giusta concentrazione. PROTEZIONE CONTRO LA PERDITA DELL’UDITO Un’alimentazione equilibrata può ridurre la degenerazione neurosensoriale associata all’esposizione al rumore e all’invecchiamento e proteggere dalle infezioni purulente dell’orecchio durante l’infanzia (ad esempio l’otite media). CONSIDERAZIONI IMPORTANTI Integrazione con acidi grassi omega 3, vitamine A, C, E e acido folico; così come minerali come magnesio, zinco e iodio si è dimostrato utile per il sistema uditivo. STILE DI VITA SANO (৳৶৲ ৳৶৳) Include fattori modificabili dello stile di vita, come attività fisica o esercizio fisico, dieta, assunzione di alcol, fumo, abuso di sostanze e attività ricreative. PROTEZIONE CONTRO LA PERDITA DELL’UDITO L’adozione di pratiche di stile di vita sano mitigano la perdita dell’udito riducendo la concomitanza di malattie croniche e ritardando l’insorgenza della degenerazione neurale legata all’età. PROTEZIONE CONTRO LA PERDITA DELL’UDITO Il livello di istruzione superiore è stato collegato a una riduzione della perdita dell’udito, principalmente attraverso l’evitamento di fattori di rischio modificabili legati allo stile di vita. FATTORI NEL CORSO DELLA VITA 32 WORLD REPORT ON HEARING IMMUNIZZAZIONE Vaccinazione, come raccomandato dai programmi di immunizzazione globali e nazionali. PROTEZIONE CONTRO LA PERDITA DELL’UDITO Immunizzazione tempestiva come protezione contro molte malattie, tra cui la rosolia, la meningite, la parotite, il morbillo e la perdita dell’udito ad esse associate. CONSIDERAZIONI IMPORTANTI Ulteriori informazioni sull’immunizzazione sono fornite nella Sezione 2 di questo Rapporto. EVITARE SUONI E RUMORI FORTI Include pratiche per evitare l’esposizione a suoni forti in ambienti professionali e personali. PROTEZIONE CONTRO LA PERDITA DELL’UDITO L’importanza del rumore come fattore causale della perdita dell’udito è stata evidenziata in precedenza. Ridurre al minimo questo fattore di rischio può ridurre l’insorgenza della perdita dell’udito e ritardare l’insorgenza della perdita dell’udito legata all’età negli anziani. CONSIDERAZIONI IMPORTANTI Ulteriori informazioni sui suoni forti e sul rumore sono fornite nella Sezione 2 della presente relazione. FATTORI NEL CORSO DELLA VITA 33CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA FATTORI PROTETTIVI E PREVENTIVI: Praticare una buona igiene dell’orecchio (142) Praticare una buona igiene dell’orecchio può prevenire molte delle condizioni comuni associate alla perdita, oltre a portare a un’identifi cazione precoce in modo che la perdita dell’udito possa essere prevenuta o evitata. Semplici misure di igiene dell’orecchio includono: • vi@are 8௓Aso di co@@on fi oc (68, 143). È importante che le persone capiscano che di solito non è necessario pulire l’interno delle orecchie e che il cerume è una normale secrezione dell’orecchio e innocuo nella maggior parte delle persone (70, 71). L’abitudine comune di pulire eccessivamente le orecchie con l’uso di cotton fi oc irrita la pelle del condotto uditivo, il che può portare a infezioni e persino aumentare la possibilità di compressione del cerume (71). • Non inserire o instillare oggetti o liquidi nell’orecchio. A meno che il loro uso non sia specifi camente raccomandato da un operatore sanitario, oggetti o liquidi non devono essere inseriti nell’orecchio. Vengono comunemente usati diversi tipi di oli e corpi estranei come bastoncini di cotone, fi ammiferi, piume, spilli o matite introdotti per pulire l’interno delle orecchie che a volte vengono lasciati nel condotto uditivo causando ulteriori infezioni o danni (70, 71). Il loro uso può provocare traumi al condotto uditivo, perforazioni del timpano e può aggravare l’occlusione di cerume. • Non usare rimedi casalinghi. L’uso di rimedi casalinghi per le comuni condizioni dell’orecchio (come il dolore all’orecchio) è diff uso e può causare danni piuttosto che dare benefi ci (144). Rimedi come le candele per l’orecchio (71, 145), l’instillazione di succo di piante/olio bollente non dovrebbero essere usati per trattare malattie o condizioni dell’orecchio, né dovrebbero cercare assistenza da operatori sanitari non preparati come è pratica comune in alcune parti del mondo (146). • Cercare assistenza medica tempestiva. Cercare un’assistenza medica tempestiva per il trattamento di raff reddori comuni, dolore all’orecchio, pienezza dell’orecchio, secrezione dell’orecchio, sanguinamento dall’orecchio o perdita dell’udito, può aiutare a prevenire o identifi care problemi all’orecchio e all’udito. Questi sintomi possono indicare una malattia dell’orecchio come l’otite media e comunemente richiedono una valutazione medica per la diagnosi e la gestione (71). Mentre un senso di ovattamento dell’orecchio, il dolore e una leggera perdita dell’udito possono essere dovuti all’occlusione del cerume, non si può tuttavia presumere che ne siano eff ettivamente la causa e si rende necessaria una conferma da parte di un operatore sanitario qualifi cato. CURA DELLE ORECCHIE (ৰ৳৯) NON ascoltare musica o rumori molto forti per un tempo prolungato in quanto ciò può causare la perdita dell’udito. NON mettere nulla nell’orecchio. Niente cotton fi oc, fermagli, stuzzicadenti, bastoncini o candele Hopi. NON ignorare un orecchio da cui fuoriesce del pus o del liquido. NON trattare alcuna condizione dell’orecchio con olio caldo o freddo, rimedi erboristici o casalinghi. NON nuotare o lavarsi in acqua sporca. 34 WORLD REPORT ON HEARING FATTORI PROTETTIVI E PREVENTIVI: Evitare suoni e rumori forti (147) Come indicato in questa sezione, il livello raccomandato di esposizione al suono è inferiore a 80 dB per un massimo di 40 ore settimanali. Gli indicatori di rumore troppo forte sono quando, ad esempio, le voci devono essere alzate per capire la conversazione; quando è difficile per chi ascolta capire cosa sta dicendo una persona a distanza di un braccio; o quando l’ascolto provoca dolore o una sensazione di ronzio nelle orecchie. L’udito può essere protetto attraverso l’adozione di semplici misure, quali: • Mantenere bassi i volumi di rumore L’esposizione al suono può essere ridotta durante l’ascolto di dispositivi audio personali: – Mantenere il volume dei dispositivi audio personali (smartphone o lettori MP3 che vengono utilizzati con cuffie/auricolari) al di sotto di 80 dB. Questo può essere verificato con l’uso di alcune applicazioni per smartphone (app) disponibili gratuitamente. Alcuni dispositivi lo forniscono come funzionalità integrata. In assenza di questi, la regola empirica per stare al sicuro è ascoltare a un volume inferiore al 60% del massimo. – Utilizzo di auricolari o cuffie accuratamente adattati e, ove possibile, con cancellazione del rumore. Auricolari e cuffie ben adattati consentono di ascoltare chiaramente la musica a livelli di volume più bassi. Inoltre, gli auricolari e le cuffie con cancellazione del rumore riducono il rumore di fondo, in modo che gli utenti possano sentire i suoni a volumi più bassi di quelli altrimenti necessari. Ad esempio, gli utilizzatori frequenti di dispositivi audio personali su treni o aerei dovrebbero prendere in considerazione l’utilizzo di auricolari o cuffie che abbiano l’impostazione di con cancellazione del rumore. • Protezione delle orecchie in situazioni rumorose Nei luoghi di lavoro rumorosi e quando si frequentano locali notturni, discoteche, bar, eventi sportivi e altri luoghi rumorosi, l’esposizione al suono può essere limitata da: – Utilizzo regolare di tappi per le orecchie come protezione. I tappi possono aiutare a ridurre considerevolmente il livello di esposizione. Se inseriti correttamente, i tappi possono ridurre l’esposizione di 5-45 dB, a seconda del tipo. – Mantenere una distanza dalle sorgenti sonore, come gli altoparlanti, può ridurre la quantità di energia sonora a cui è esposta una persona. 35CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA • Ridurre al minimo il tempo trascorso in ambienti rumorosi È particolarmente importante controllare l’esposizione al suono per le persone che incontrano regolarmente suoni forti nel loro luogo di svago o di lavoro. Questo può essere ottenuto da: – Limitare il tempo trascorso ad ascoltare utilizzando dispositivi audio personali. Inoltre, durante l’ascolto dei dispositivi, mantenere il volume basso, come sopra indicato. – Fare brevi pause lontano da suoni forti. Quando sei in un ambiente rumoroso, cerca di fare pause regolari e spostati in una zona più tranquilla. Ciò potrebbe aiutare le cellule sensoriali a riprendersi dall’affaticamento causato dall’esposizione al rumore e ridurre il rischio di perdita dell’udito. • Monitoraggio dell’esposizione personale al suono Conoscere il livello del suono a cui si è esposti può aiutare una persona a impostare il proprio limite in base alle proprie preferenze. Questo può essere ottenuto grazie a: – Utilizzo di app per smartphone che monitorano l’esposizione al suono. Sono disponibili app che aiutano a monitorare l’esposizione attraverso il dispositivo, anche nell’ambiente esterno. – Utilizzo di smartphone, attualmente disponibili, che includono funzionalità integrate di ascolto sicuro. Il loro utilizzo può aiutare le persone a fare scelte di ascolto sicuro. L’uso di tappi per le orecchie in luoghi rumorosi può ridurre il riscKio di perdita dellȆudito in modo significativo © E dd ie L in ss en / Al am y St oc k Ph ot o 36 WORLD REPORT ON HEARING Più di 1,5 miliardi di persone soffre di un qualche grado di perdita dell’udito, che può avere un impatto significativo sulla qualità di vita, sulla famiglia, sulla società e sui Paesi. 1.3 DECLINO DELLA CAPACITÀ UDITIVA 1.3.1 DEFINIZIONE E TIPI DI PERDITA UDITIVA (148) Si dice che una persona abbia una perdita dell’udito se la sua capacità uditiva è ridotta e non è in grado di sentire bene come qualcuno con un udito normale. L’udito “normale” si riferisce tipicamente a soglie uditive di 20 dB o migliori in entrambe le orecchie (vedi Tabella 1.3). I soggetti con una soglia uditiva superiore a 20 dB possono essere considerati “non udenti” o “sordi” a seconda della gravità della perdita uditiva. Il termine “non udenti” è usato per descrivere la condizione delle persone con ipoacusia da lieve a grave in quanto non riescono a sentire bene come quelle con udito normale. Il termine “sordo” è usato per descrivere la condizione di persone con ipoacusia grave o profonda in entrambe le orecchie che possono sentire solo suoni molto forti o non sentire assolutamente nulla. Diversi tipi di perdita dell’udito includono: • Ipoacusia trasmissiva: questo termine viene utilizzato quando la perdita dell’udito è causata da problemi localizzati nel condotto uditivo o nell’orecchio medio che rendono difficile la “conduzione” del suono attraverso l’orecchio interno. • Ipoacusia neurosensoriale: questo termine viene utilizzato quando la causa della perdita dell’udito è localizzata nella coclea o nel nervo acustico, o talvolta in entrambi. “Sensoriale” si riferisce alla coclea che è un “organo di senso”; “neurale” si riferisce al nervo acustico. • Ipoacusia mista: questo termine viene utilizzato quando nello stesso orecchio si riscontra sia ipoacusia trasmissiva che neurosensoriale. 1.3.2 VALUTAZIONE DELLA CAPACITÀ UDITIVA La capacità uditiva si riferisce alla capacità di percepire i suoni ed è comunemente misurata attraverso l’audiometria tonale pura (PTA), considerata il test di valutazione gold standard. Gli spostamenti della soglia audiometrica aiutano a definire la natura della perdita dell’udito, che può essere di tipo conduttivo, neurosensoriale o misto la cui gravità varia da lieve a completa. 37CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA La valutazione della capacità uditiva tramite audiometria tonale pura (PTA) è essenziale, sia ai fini epidemiologici, che per orientare la riabilitazione. Tuttavia, la valutazione dell’audiometria tonale (PTA) non dovrebbe essere l’unico determinante per la riabilitazione, principalmente perché i cambiamenti audiometrici non forniscono informazioni su come i suoni vengono elaborati dal sistema uditivo centrale e quindi offrono solo una visione limitata del funzionamento del “mondo reale” (149). Ad esempio, una persona con un risultato del test dell’audiogramma8 “normale” può incontrare problemi in ambienti di ascolto difficili, come ad esempio in situazioni rumorose (85, 150). Anche quando la perdita dell’udito è lieve, e quindi non può essere considerata significativa, una persona può sperimentare limitazioni nel funzionamento quotidiano che non si rifletterebbero attraverso la sola valutazione di un audiogramma (151, 152). I bambini e gli adulti possono avere un audiogramma normale, ma avere un deficit nell’elaborazione delle informazioni uditive nel cervello e limitazioni nell’udito - indicato come disordine dell’elaborazione uditiva centrale (149, 153). Alcune di queste limitazioni possono essere affrontate attraverso test del parlato come i test di “discriminazione vocale” e “Test sul parlato nel rumore” (149). È quindi importante assumere una visione olistica del profilo audiologico di una persona e delle esperienze uditive per garantire che vengano affrontate le limitazioni nell’attività, la partecipazione in ambienti silenziosi e rumorosi e le esigenze e le preferenze di comunicazione (8, 154). Queste considerazioni sono elaborate nella Sezione 2. 1.3.3 DISTURBI DEL TRATTAMENTO UDITIVO Alcuni bambini e adulti possono avere difficoltà uditive anche in assenza di risultati audiometrici sostanziali. Questi possono avere una neuropatia uditiva (APD) - un termine generico che indica i disturbi dell’udito che derivano dalla scarsa elaborazione delle informazioni uditive nel cervello (149, 153). Ciò può manifestarsi come scarsa capacità uditiva e comprensione, nonostante le normali soglie uditive per i toni puri. Le stime di prevalenza dell’elaborazione uditiva (APD) nei bambini variano dal 2-10% con frequenti co-occorrenze in bambini con altre disabilità dell’apprendimento o dello sviluppo (153, 155). Il disordine dell’elaborazione uditiva (APD) può influenzare lo sviluppo psicosociale, il rendimento scolastico, la partecipazione sociale e le opportunità di carriera. L’APD legata all’età può contribuire comune alle difficoltà uditive in età avanzata. 1.3.4 GRADI DI PERDITA DELL’UDITO Per standardizzare il modo in cui viene segnalata la gravità della perdita dell’udito, l’OMS ha adottato un sistema di classificazione basato su misurazioni audiometriche. Questo sistema è una revisione di un precedente approccio adottato dall’OMS e differisce dal sistema precedente in quanto la misurazione dell’insorgenza di ipoacusia lieve è ridotta da 26 dB a 20 dB; la perdita dell’udito è classificata come lieve, moderata, moderatamente grave, grave, profonda o completa; ed è stata aggiunta la perdita dell’udito unilaterale. 8 Gli audiogrammi mostrano lintensità minima, in decibel, che una persona può sentire a diverse frequenze di suono. Questo è tipicamente rappresentato sotto forma di grafico dopo un test delludito, misurato da un audiometro. 38 WORLD REPORT ON HEARING Oltre alle classificazioni, il sistema rivisto fornisce una descrizione delle conseguenze funzionali per la comunicazione che probabilmente accompagneranno ciascun livello di gravità (148). Questo sistema di classificazione rivisto è presentato nella tabella 1.3 di seguito. Tabella 1.3 Gradi di ipoacusia e relativa esperienza uditiva* Grado Soglia uditiva‡ in un orecchio dall’udito migliore in decibel (dB) Esperienza di ascolto in un ambiente tranquillo per la maggior parte degli adulti Esperienza di ascolto in un ambiente rumoroso per la maggior parte degli adulti Udito normale Meno di 20 dB Nessun problema a sentire i suoni Nessun problema o minimo problema di ascolto dei suoni Ipoacusia lieve da 20 a < 35 dB Non ha problemi a sentire il discorso colloquiale Può avere difficoltà a sentire il discorso colloquiale Perdita dell’udito moderata da 35 a < 50 dB Può avere difficoltà a sentire il discorso colloquiale Difficoltà a sentire e a prendere parte alla conversazione Perdita dell’udito moderatamente grave da 50 a < 65 dB Difficoltà a sentire il discorso colloquiale; può sentire le voci alte senza difficoltà Difficoltà a sentire la maggior parte dei discorsi e a prendere parte alla conversazione Perdita dell’udito grave da 65 a < 80 dB Non sente la maggior parte dei discorsi colloquiali; può avere difficoltà a sentire e comprendere le voci alte Estrema difficoltà nell’ascoltare i discorsi e nel prendere parte alla conversazione Perdita dell’udito profonda da 80 a < 95 dB Estrema difficoltà a sentire le voci alte Il discorso colloquiale non può essere ascoltato Perdita/sordità uditiva completa o totale 95 dB o superiore Non riesco a sentire il parlato e la maggior parte dei suoni ambientali Non riesce a sentire il parlato e la maggior parte dei suoni ambientali Unilaterale < 20 dB nell’orecchio migliore, 35 dB o più nell’orecchio peggiore Potrebbe non avere problemi a meno che il suono non sia vicino all’orecchio con udito più debole. Potrebbe avere difficoltà a localizzare i suoni Può avere difficoltà a sentire le parole, a prendere parte alla conversazione e a localizzare i suoni * La classificazione e i gradi sono per uso epidemiologico e applicabili agli adulti. I seguenti punti devono essere tenuti presenti durante l’applicazione di questa classificazione: • Sebbene i descrittori audiometrici (ad es. categoria, media del tono puro) forniscano un utile riassunto delle soglie uditive di un individuo, non dovrebbero essere utilizzati come unico fattore determinante nella valutazione della disabilità o nella fornitura di interventi, inclusi apparecchi acustici o impianti cocleari. • La capacità di rilevare i toni puri utilizzando gli auricolari in un ambiente silenzioso non è, di per sé, un indicatore affidabile di disabilità uditiva. I descrittori audiometrici da soli non dovrebbero essere usati come misura della difficoltà sperimentata con la comunicazione nel rumore di fondo, il disturbo principale delle persone con perdita dell’udito. La perdita dell’udito unilaterale può rappresentare una sfida significativa per un individuo a qualsiasi livello di asimmetria. Richiede quindi un’attenzione e un intervento adeguati in base alla difficoltà vissuta dalla persona. ȍ “Soglia uditiva” si riferisce all’intensità sonora minima che un orecchio può rilevare come media di valori a 500, 1000, 2000, 4.000 Hz nell’orecchio migliore (148, 156, 157). 39CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA Le classificazioni utilizzate nella Tabella 1.3 seguono le raccomandazioni della Classificazione internazionale del funzionamento, della disabilità e della salute (ICF) proposta dall’OMS nel 2001. Come affermato nell’ICF, una persona con la minima riduzione della sensibilità uditiva ha una condizione potenzialmente “disabilitante”. L’ICF definisce lo stato di salute di una persona lungo tre dimensioni che sono delineate nel Box 1.1 (158). Secondo l’ICF, la disabilità vissuta è determinata non solo dalla perdita dell’udito dell’individuo, ma anche dall’ambiente fisico, sociale e attitudinale in cui la persona vive e dalla possibilità di accedere a servizi per la cura dell’orecchio e dell’udito (EHC) di qualità. Pertanto, è probabile che una persona con perdita dell’udito che non ha accesso alle cure, sperimenti limitazioni molto maggiori nel funzionamento quotidiano e quindi gradi più elevati di disabilità. Box 1.1 Classificazione internazionale del funzionamento, della disabilità e della salute (158) La Classificazione internazionale del funzionamento, della disabilità e della salute (ICF) è il quadro dell’OMS per misurare la salute e la disabilità a livello sia individuale che di popolazione. L’ICF definisce lo stato di salute di una persona attraverso tre dimensioni: (i) Compromissione: che si riferisce alla funzione o alla forma a livello del corpo (denominata “deficit dell’udito” nel caso dell’udito). (ii) Limitazione dell’attività: che si riferisce al livello di funzionalità personale (precedentemente denominato “disabilità”). (iii) 5estrizione alla partecipazione: che si riferisce alla funzione psicosociale (definita come “handicap” nelle versioni precedenti dell’ICF). Il termine “disabilità” comprende tutti i problemi o le difficoltà che una persona con problemi di udito può incontrare nello svolgimento di attività o situazioni quotidiane, come la cura di sé, l’andare a scuola o al lavoro. La “disabilità” in termini di perdita dell’udito si riferisce alle menomazioni, limitazioni e restrizioni (fisiche, sociali o attitudinali) vissute. Poiché il funzionamento e la disabilità sono influenzati dal contesto, l’ICF include anche un elenco di fattori ambientali che contribuiscono alle difficoltà vissute dalle persone con perdita dell’udito. 40 WORLD REPORT ON HEARING 1.3.5 STIME SULLA PERDITA DELL’UDITO9 La perdita dell’udito colpisce attualmente più di 1,5 miliardi di persone, ovvero il 20% della popolazione mondiale; la maggior parte di questi (1,16 miliardi) ha una lieve ipoacusia. Tuttavia, una parte sostanziale, ovvero 430 milioni10 di persone (il 5,5% della popolazione globale) sperimenta livelli moderati o più elevati di deficit che, se non affrontati, molto probabilmente avranno un impatto sulle attività quotidiane e sulla qualità di vita. Informazioni più dettagliate sulla gravità e la distribuzione della perdita dell’udito sono presentate nei dati seguenti. PERDITA DELL’UDITO SECONDO LA GRAVITÀ Oltre ai 1,16 miliardi di persone in tutto il mondo con ipoacusia lieve, circa 400 milioni convivono con una perdita che varia da moderata a grave; quasi 30 milioni hanno perdita dell’udito profonda o completa in entrambe le orecchie (Figura 1.5). Figura 1.5 Numero di persone e prevalenza percentuale in base ai gradi di ipoacusia Figure 1.5 Number of people and percentage prevalence according to grades of hearing loss 0.2% Lieve Moderato Moderatamente grave Severo Profondo Completo 14.9% 3.4% 1.3% 0.4% 0.2% 1153 milioni 266 milioni 103 milioni 30.7 milioni 17.2 milioni 12.6 milioni 9 GBD 2019 Hearing Loss Collaborators (2021). Hearing Loss prevalence and years lived with disability, 1990-2019: findings from the Global Burden of Disease Study 2019. The Lance (in stampa). 10 Si riferisce al numero di persone con soglia uditiva superiore a 35 dB nell’orecchio migliore. Globalmente 1,5 miliardi di persone convivono con la perdita dell’udito 41CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA DIFFERENZE DI ETÀ E DI GENERE NELLA PERDITA DELL’UDITO La prevalenza globale di ipoacusia di grado moderato o superiore aumenta con l’età, passando dal 12,7% all’età di 60 anni a oltre il 58% a 90 anni (Figura 1.6). Oltre il 58% di ipoacusia di grado moderato o superiore colpisce adulti di età superiore ai 60 anni. In termini di differenze di genere, la prevalenza globale di livelli moderati o più elevati di ipoacusia è leggermente superiore tra gli uomini rispetto alle donne, con 217 milioni di uomini (5,6%) che vivono con perdita dell’udito, rispetto a 211 milioni di donne (5,5%). Figura 1.6 Prevalenza globale della perdita dell’udito (di grado moderato o superiore) in base all’età 0 10 20 30 40 50 60 Prevalenza (0%) 0.2 0.2 0.4 1.0 1.5 1.7 1.9 2.0 2.1 2.3 2.5 2.8 3.9 5.6 8.4 12.7 18.7 26.1 34.7 43.6 51.8 58.1 58.6 5.4 5.6 N eo na ta le P re co ce (0 –6 g io rn i) N eo na ta le T ar di vo (7 –2 7 gi or ni ) Po st N eo na ta le (2 8– 36 4 dg io rn i) 1– 4 5– 9 10 –1 4 15 –1 9 20 –2 4 25 –2 9 30 –3 4 35 –3 9 40 –4 4 45 –4 9 50 –5 4 55 –5 9 60 –6 4 65 –6 9 70 –7 4 75 –7 9 80 –8 4 85 –8 9 90 –9 4 95 + Et à M ed ia Tu tte le e tà Figure 1.6 Prevalence of moderate or higher grade of hearing loss according to age 42 WORLD REPORT ON HEARING DISTRIBUZIONE DELLA PERDITA DELL’UDITO NELLE REGIONI DELL’OMS La prevalenza della perdita dell’udito varia nelle sei regioni dell’OMS, dal 3,1% nella regione del Mediterraneo orientale, al 7,1% nella regione del Pacifi co occidentale. La quota massima è conferita dalla regione del Pacifi co occidentale, seguita dalla regione del sud-est asiatico (Figura 1.7). Figura 1.7 Prevalenza della perdita dell’udito (di grado moderato o superiore) nelle regioni dell’OMSFigure 1.7 Prevalence of hearing loss (of moderate or higher grade) in WHO regions Pacifico Occidentale Sud-Est Asiatico Mediterraneo OrientaleEuropaAfricaAmerica 62.7 6.2% milioni 39.9 3.6% milioni 57.3 6.2% milioni 22.1 3.1% milioni 109.4 5.5% milioni 136.5 7.1% milioni Ambiziso (90%) Progressivo (50%) Nota: Questa illustrazione rappresenta le regioni dell’OMS, non i confi ni dei Paesi. PREVALENZA DELLA PERDITA DELL’UDITO A SECONDA DEI GRUPPI DI REDDITO La prevalenza della perdita dell’udito varia notevolmente tra i gruppi di reddito della Banca Mondiale in tutto il mondo, dal 3,3% nei paesi a basso reddito, al 7,5% nei paesi ad alto reddito. La quota massima di persone con perdita dell’udito proviene dai Paesi a reddito medio- basso e dai paesi a reddito medio-alto (circa 320 milioni). Del totale delle persone con perdita uditiva moderata o superiore, quasi l’80% vive in paesi del mondo a basso e medio reddito, rispetto al 20% che vive in paesi ad alto reddito (Figura 1.8). 43CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA Figura 1.8 Prevalenza globale della perdita dell’udito (di grado moderato o superiore) in base al gruppo di reddito 0 1 2 3 4 5 6 7 8 Figure 1.8 Pr lence of hearing loss (of moderate or higher grade) according to income group Prevalenza (%) Numero (in milioni) Reddito Medio-Basso Reddito Basso Reddito AltoReddito Medio-Alto 3.3% 4.8% 6.2% 7.5% 23.4 150.5 166.4 87.7 © C hi na R es ea rc h an d Re ha bi lit at io n Ce nt re fo r H ea ri ng a nd S pe ec h Im pa ir m en t ( CR RC H SI ) , bambini con perdita uditiva sono identifi cati e inclusi in un programma di intervento precoce attraverso lo screening uditivo neonatale condotto a livello nazionale dal CRRCHSI 44 WORLD REPORT ON HEARING L’intervento precoce è fondamentale per ridurre al minimo l’impatto negativo della perdita uditiva sul linguaggio e sullo sviluppo cognitivo. 1.4 L’IMPATTO DELLA PERDITA UDITIVA NON AFFRONTATA Nel 2019, il numero globale di anni vissuti con disabilità (YLD) attribuibili alla perdita dell’udito è stato di 43,5 milioni (95% UI 29,7-61,8). Questo numero è aumentato del 73% dal 1990 (25,0 milioni di YLD). La perdita dell’udito correlata all’età è stata la terza maggiore causa di disabilità globale (YLD) nel 2019 e la principale fonte per gli adulti di età superiore ai 70 anni.11 Il 65% della disabilità causata dalla perdita dell’udito è attribuito a gradi moderati o superiori di deficit. Indipendentemente dalla gravità della patologia o dal profilo audiologico, la misura in cui la perdita dell’udito influisce sulla vita delle persone dipende dal fatto che venga affrontata con interventi clinici o riabilitativi efficaci (75, 123, 159) e dalla misura in cui l’ambiente è reattivo ai bisogni delle persone ipoacusiche (75, 158). L’impatto può anche essere influenzato da altre limitazioni funzionali coesistenti come disabilità visive, autismo o disabilità dello sviluppo. Si stima che la doppia perdita sensoriale sotto forma di sordocecità colpisca fino allo 0,2-2% della popolazione mondiale a tutte le età (159). Le implicazioni del suo impatto sono evidenziate nel box 1.2. Box 1.2 Doppia perdita sensoriale: sordocecità (160, 161) La sordocecità comporta una doppia perdita sensoriale della vista e dell’udito a vari livelli. Sebbene colpisca tutte le età, la sordocecità si verifica più comunemente nelle persone anziane. Pertanto, con l’invecchiamento della popolazione globale, è diventato un fenomeno sempre più diffuso. I soggetti con sordocecità di solito denunciano una bassa qualità della vita complessiva. Spesso si sentono socialmente isolati a causa di difficoltà di comunicazione e mancanza di accettazione pubblica; hanno ridotto la partecipazione a eventi sociali a causa di problemi di mobilità; hanno difficoltà con le funzioni quotidiane; provano sentimenti di solitudine, rabbia, frustrazione, depressione, insicurezza, incertezza sul futuro; inutilità e affrontano lo stigma su base giornaliera. Rispetto ad altre disabilità, le persone con sordocecità hanno maggiori probabilità di vivere in povertà e di essere disoccupate, con risultati educativi inferiori. 11 GBD 2019 Hearing Loss Collaborators. Hearing loss prevalence and years lived with disability, 1990–2019: findings from the Global Burden of Disease Study 2019. The Lancet. (2021). doi: 10.1016/S0140-6736(21)00516-X. 45CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA 1.4.1 IMPATTO A LIVELLO INDIVIDUALE Quando non viene affrontata, la perdita dell’udito ha un impatto su molti aspetti della vita. ASCOLTO E COMUNICAZIONE (162) La sfida più grande per le persone con ipoacusia non trattata consiste nel mantenere viva la comunicazione con gli altri. L’entità del problema varia a seconda dei fattori sopra elencati e può variare dall’avere difficoltà nell’ascoltare un discorso in un ambiente tranquillo o in un ambiente rumoroso, all’incapacità di sentire anche suoni di segnalazione forti, come ad esempio gli allarmi. Le persone con perdita dell’udito hanno spesso bisogno di chiedere agli altri di ripetersi e possono avere difficoltà a comunicare sul posto di lavoro o a portare avanti una conversazione di routine. Queste difficoltà sono state ulteriormente aggravate dalle misure preventive essenziali contro il COVID- 19 (163). Mentre le mascherine e il distanziamento sociale sono alleati indiscussi nella lotta contro il virus, creano ulteriori ostacoli per le persone con ipoiacusia, che spesso si affidano alla lettura delle labbra e ad altri indizi facciali e fisici per comunicare (163). LINGUA E LINGUAGGIO Lo sviluppo del linguaggio parlato nei bambini è direttamente correlato alla loro capacità uditiva. La maggior parte degli studi condotti su bambini con ipoacusia mostra che essi sperimentano un ritardo nello sviluppo della lingua e del linguaggio che probabilmente continuerà fino all’età adulta (154, 164). Il grado di disabilità è proporzionato alle difficoltà nella percezione del linguaggio e ai deficit linguistici (165). Tuttavia, anche perdite uditive lievi o unilaterali, che sono comunemente trascurate, hanno un impatto negativo sullo sviluppo della lingua e del linguaggio nei bambini (154, 166-168). Gli esiti della lingua e del linguaggio dei bambini con ipoacusia sono anche fortemente influenzati dall’età in cui viene iniziato l’intervento, con risultati più positivi per i bambini identificati prima dei sei mesi di età e seguiti da un intervento tempestivo (169). La tempistica dell’intervento influisce anche sugli esiti dello sviluppo, poiché la deprivazione sensoriale nei primi anni di vita è comunemente collegata a problemi di sviluppo (170). La lingua è essenziale non solo come mezzo di comunicazione, ma anche come contributo allo sviluppo cognitivo, strumento per l’educazione e base per le relazioni sociali. Quindi, l’accesso al linguaggio è critico (171); quando i bambini non udenti non sono in grado di accedere alla stimolazione del linguaggio all’inizio della vita, rappresenta una sfida per il loro sviluppo complessivo (171). Un bambino sordo in Bangladesh si mantiene al passo con la sua educazione © N az m ul B ar i, Ce nt re fo r D is ab ili ty in D ev el op m en t, B an gl ad es h 46 WORLD REPORT ON HEARING Nei bambini (e anche negli adulti) che sviluppano la perdita dell’udito dopo lo sviluppo del linguaggio, il deficit può influire sulla qualità del discorso, che se non trattata può essere ridotta e poco chiara. Nei soggetti affetti da ipoacusia neurosensoriale, come l’ipoacusia legata all’età, è stata osservata una tendenza comune a parlare ad alta voce, che può creare ulteriori difficoltà all’interno delle famiglie (154). COGNIZIONE La privazione del linguaggio rischia di ritardare lo sviluppo cognitivo nei bambini, che può essere evitato se ricevono un intervento adeguato durante i primi anni di vita (170, 172). Anche la perdita dell’udito unilaterale, che si verifica nei bambini, influisce sullo sviluppo delle capacità cognitive (168). L’impatto sulla cognizione non è limitato ai bambini, ma è chiaramente evidente anche nella perdita dell’udito che inizia nell’età adulta. La perdita dell’udito è il maggiore fattore di rischio potenzialmente modificabile per la demenza correlata all’età (173, 174). FORMAZIONE SCOLASTICA La perdita dell’udito può avere un impatto duraturo sui risultati scolastici di un individuo. A meno che non ci sia un intervento tempestivo, le persone con perdita hanno un rendimento scolastico ridotto, una progressione più lenta attraverso il sistema accademico, un rischio maggiore di abbandono scolastico e una minore probabilità di fare domanda per l’istruzione superiore, rispetto ai loro coetanei udenti (181-183). OCCUPAZIONE L’associazione tra perdita dell’udito e occupazione negli adulti è evidente. Gli studenti con ipoacusia spesso dimostrano una mancanza di pianificazione della carriera e di processo decisionale necessari per il successo sul posto di lavoro (182, 183). Nel complesso, gli adulti con perdita dell’udito hanno maggiori probabilità di disoccupazione o sottoccupazione (184-186). Nella La perdita uditiva non affrontata può essere responsabile di oltre l’8% dei casi di demenza tra gli adulti anziani (173, 175), con un rischio potenzialmente maggiore in paesi ad alto reddito (174), e aumenta significativamente il rischio relativo di demenza e deterioramento cognitivo (173, 176–180). In Norvegia si è studiato un gruppo di persone visto in una prospettiva di oltre 30 anni (lo studio HUNT). Lo studio ha rivelato che le persone con perdita di udito da moderata a grave (o con lieve perdita) avevano circa la metà delle possibilità di raggiungere un grado di istruzione superiore, rispetto alle persone senza alcun deficit (181). 47CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA Finlandia settentrionale, uno studio longitudinale ha mostrato che le persone di 25 anni, con perdita dell’udito clinicamente misurata, avevano il doppio delle probabilità di essere disoccupate rispetto a quelle della stessa età con udito normale (182). Quando lavorano, le persone con problemi di udito spesso hanno salari più bassi e vanno in pensione prima dei loro coetanei udenti (184, 187). ISOLAMENTO SOCIALE E SOLITUDINE La perdita dell’udito contribuisce sia all’isolamento sociale che alla solitudine a tutte le età, in particolare nelle donne e negli anziani (188, 189), forse a causa della minore partecipazione ad attività, o per un uso minore dei social network. Ciò si osserva soprattutto nei luoghi in cui l’accesso alle cure per l’orecchio e l’udito è limitato (190). La ridotta capacità di comprendere le informazioni uditive e di mantenere conversazioni (191) può portare ad evitare situazioni sociali potenzialmente imbarazzanti da parte delle persone ipoacusiche (192). Pertanto, le persone con perdita dell’udito, in particolare quelle che non utilizzano apparecchi acustici, mostrano livelli elevati di solitudine (188, 193, 194). L’isolamento sociale e la solitudine dovuti alla perdita dell’udito possono avere importanti implicazioni per la salute psicosociale e cognitiva degli anziani. La mancanza di impegno e il sentirsi soli possono accelerare il percorso che collega la perdita dell’udito e al declino cognitivo (195, 196). Inoltre, entrambi possono contribuire a peggiorare la salute mentale, portando a esperienze di depressione e angoscia (189, 197, 198). SALUTE MENTALE Nel corso della vita, le persone con perdita dell’udito hanno comunemente tassi più elevati di depressione e dichiarano di avere una qualità della vita inferiore rispetto ai loro coetanei udenti (199-201). Il ritiro sociale e le interazioni sociali alterate sono spesso presenti nelle persone con perdita dell’udito, così come sentimenti di imbarazzo, rifiuto e ansia (162). Spesso, durante la conversazione, gli interlocutori sperimentano frustrazione e rabbia (162). Nella Finlandia settentrionale, le persone con ipoacusia non trattata hanno il doppio delle probabilità di essere disoccupate rispetto a quelle con udito normale (182). 48 WORLD REPORT ON HEARING RELAZIONI Oltre il 90% dei bambini sordi nasce da genitori udenti che molto spesso non hanno mezzi pienamente efficaci per comunicare con il proprio figlio (202, 203). Numerosi studi riportano che i genitori hanno difficoltà a sviluppare una comunicazione significativa con il proprio bambino ipoacusico e difficoltà nella gestione del suo comportamento, specialmente in presenza di condizioni come i disturbi dello spettro autistico (204). Negli adulti, la perdita dell’udito può avere un impatto negativo sulle relazioni personali causando difficoltà di comunicazione, incomprensioni e conflitti (162). L’effetto è evidente sia per la persona con perdita dell’udito che per le persone con cui deve comunicare. CASE STUDY I genitori hanno bisogno di sostegno nell’affrontare le esigenze dei figli non udenti o con problemi di udito Dato che la maggior parte dei bambini non udenti e con problemi di udito nasce da genitori udenti, che non hanno alcuna esperienza con le implicazioni della gestione della perdita di udito, le famiglie sono colpite in molti modi diversi. Ad esempio, si vivono livelli più elevati di stress tra i genitori, quando devono prendere decisioni sulla riabilitazione e l’educazione del bambino. Il benessere dei genitori stessi ha un’influenza significativa sugli esiti audiologici, cognitivi e socio-emotivi del bambino con perdita dell’udito (205). Pertanto, le informazioni, la guida e il supporto ai genitori al cui bambino è stata diagnosticata una perdita uditiva sono fondamentali, ma non sempre disponibili. In alcune parti del mondo, sforzi ben organizzati da parte di gruppi di genitori di bambini sordi e con problemi di udito, come “Hands and Voices” (206), hanno assunto un ruolo guida nel fornire supporto familiare e nel mettere a disposizione risorse che accrescono nei genitori la conoscenza su come affrontare i bisogni dei figli. Questo impegno ha avuto un impatto di vasta portata sulla conoscenza e sul sostegno ricevuto dalle famiglie con bambini non udenti o con problemi di udito. Come ha risposto un genitore quando ha ricevuto il sostegno da “genitore alla pari”: “Grazie mille. Mi sono sentito come se fossi su una piccola barca in mezzo all’oceano senza vista di terra o nave. Mi hai lanciato un salvagente” (206). IDENTITÀ E STIGMA La perdita dell’udito tra bambini, adolescenti e adulti è spesso collegata a sentimenti di inadeguatezza e bassa autostima (162, 207). Le persone con perdita dell’udito, anche quando questa viene affrontata, possono comunemente riflettere lo stigma associato alla perdita dell’udito e all’uso di dispositivi acustici (162) e cercare di nascondere la propria disabilità. Molti scelgono di non usare gli apparecchi acustici a causa di pregiudizi e stereotipi legati all’età (208). 49CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA 1.4.2 IMPATTO A LIVELLO DI FAMIGLIA/PARTNER DI COMUNICAZIONE La maggior parte dei bambini non udenti o con problemi di udito nasce da genitori con udito normale (202, 203). Negli Stati Uniti, ad esempio, solo il 4% circa dei bambini non udenti o con problemi di udito ha genitori sordi; un ulteriore 4% ha un genitore con problemi di udito. I genitori con un figlio sordo o con problemi di udito di solito sperimentano livelli più elevati di tensione emotiva e fisica rispetto agli altri genitori; la loro carriera può essere compromessa per prendersi cura del figlio a tempo pieno e talvolta può essere necessario trasferirsi per essere più vicini ai servizi richiesti (204). Notevole anche l’impatto sulle famiglie, in particolare sui partner, che possono subire riduzioni delle funzioni sociali dovute a restrizioni alla partecipazione legate alla perdita uditiva del partner; aumento dello stress legato alla comunicazione; e ridotta soddisfazione all’interno della relazione (118, 162). 1.4.3 IMPATTO ECONOMICO (210) Al di là delle difficoltà finanziarie a livello individuale, la perdita dell’udito ha un notevole impatto economico sulla società nel suo insieme. I dati dell’OMS rivelano che il costo globale della perdita dell’udito non trattata è maggiore di  980 miliardi all’anno (vedi Figura 1.9). Sono inclusi i costi relativi a: • Il settore sanitario: si stima che siano circa 314 miliardi di dollari e includono i costi sanitari per bambini e adulti derivanti dal mancato trattamento della perdita dell’udito. Non comprendono i costi per la prestazione dei servizi e la riabilitazione. • Il settore educativo: una stima prudente del costo per fornire supporto ai bambini (cioè quelli di età compresa tra 5 e 14 anni) con ipoacusia non trattata è di quasi 27 miliardi di dollari. Ciò presuppone che solo i bambini con ipoacusia almeno moderatamente grave (cioè un livello uditivo superiore a 50 dB nell’orecchio con udito migliore) necessitano di supporto educativo. • Perdita di produttività: i costi legati alla disoccupazione e al pensionamento anticipato tra le persone con perdita dell’udito sono stimati intorno a  182,5 miliardi all’anno. • Costi sociali: il risultato dell’isolamento sociale, difficoltà di comunicazione e stigma aggiungono ulteriori 456,5 miliardi di dollari ogni anno. Questi costi sono calcolati sulla base del valore monetario legato alla perdita di un anno vissuto con disabilità e attingendo agli anni di vita adeguati alla disabilità (DALY) attribuiti alla perdita dell’udito. È importante notare che il 53% di tutti i costi è attribuito ai Paesi a basso e medio reddito. La perdita dell’udito non affrontata costa al mondo 980 miliardi di dollari all’anno. 50 WORLD REPORT ON HEARING Figura 1.9 Costi illustrativi combinati diretti, indiretti e immateriali della perdita dell’udito (in miliardi di dollari)* INTANGIBILI 456.5 SALUTE 313.6 EDUCAZIONE 26.8 PRODUTTIVITÀ 182.4 America 262.0 Tutti i costi Africa 27.1 Europa 224.5 Mediterraneo Orientale 29.8 Asia Sud-Orientale 107.7 Pacifico Occidentale 328.3 979.6 Tutti i costi Mondo INTANGIBILI SALUTE EDUCAZIONE PRODUTTIVITÀ 125.3 88.6 3.8 44.1 12.4 7.3 3.6 3.5 125.6 74.5 3.2 21.1 13.9 9.0 1.6 5.2 38.7 32.2 7.0 29.7 140.5 101.8 7.4 78.5 Tutti i costi Tutti i costi Tutti i costi Tutti i costi Tutti i costi * Tutti i costi sono calcolati per gradi di ipoacusia moderati o superiori, ovvero livello uditivo superiore a 35 dB nell’orecchio con migliore udito. I costi sono stimati in dollari internazionali 2015 (un’unità di valuta definita dalla Banca Mondiale e rappresentata semplicemente come “” nella tabella). N.B. L’analisi non tiene conto di alcuni aspetti della perdita dell’udito, i cui costi non sono ben documentati in letteratura, come i costi per fornire assistenza informale, o l’apprendimento prescolare e l’istruzione superiore per le persone con perdita dell’udito non trattata (201). Queste stime si concentrano solo sulla perdita dell’udito non trattata e non tengono conto degli alti costi posti dall’otite media e dalla sua gestione. I costi attribuiti alla gestione medica e chirurgica di queste malattie potenzialmente prevenibili sono elevati. In Australia, ad esempio, i costi di trattamento per i casi di otite media, escluse le complicanze e le comorbidità, sono stati di 100-400 milioni di dollari nel 2008 (211). Nella Repubblica di Corea, uno studio rappresentativo a livello nazionale ha stimato i costi del trattamento dell’otite media a 497,35 milioni di dollari USA solo nel 2012 (212). Contrariamente ai dati forniti sopra, questi costi si riferiscono alla gestione di questo gruppo di condizioni in alcuni paesi. Tuttavia, la loro inclusione qui è rilevante poiché questi costi potrebbero essere mitigati da azioni preventive come indicato nella Sezione 2. La perdita dell’udito può avere effetti negativi in tutte le fasi della vita; tuttavia, gli impatti descritti in questa sezione possono essere mitigati se affrontati in modo tempestivo e appropriato, come evidenziato nelle sezioni successive. 51CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA BIBLIOGRAFIA 1. Lemke U, Scherpiet S. Oral communication in individuals with hearing impairment- considerations regarding attentional, cognitive and social resources. Front Psychol. 2015;6:998. 2. Thiyagarajan JA, Araujo de Carvalho I, Peña-Rosas JP, Chadha S, Mariotti SP, Dua T, et al. 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Cortical neuroplasticity in hearing loss: why it matters in clinical decision-making for children and adults: observing changes in brain processing - and adjusting our intervention strategies accordingly. Hear Rev. 2018;25(7):20. 173. Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, Bannerjee S, et al. Dementia prevention, intervention, and care. Lancet. 2020;396(10248):413-446. 174. Mukadam N, Sommerlad A, Huntley J, Livingston G. Population attributable fractions for risk factors for dementia in low-income and middle-income countries: an analysis using cross-sectional survey data. Lancet Glob Health. 2019;7(5):e596-e603. 175. Kivimäki M, Singh-Manoux A. Prevention of dementia by targeting risk factors. Lancet. 2018;391(10130):1574-5. 176. Zheng Y, Fan S, Liao W, Fang W, Xiao S, Liu J. Hearing impairment and risk of Alzheimer’s disease: a meta-analysis of prospective cohort studies. Neurol Sci. 2017;38(2):233-9. 177. Wei J, Hu Y, Zhang L, Hao Q, Yang R, Lu H, et al. Hearing impairment, mild cognitive impairment, and dementia: a meta-analysis of cohort studies. Dement Geriatr Cogn Dis Extra. 2017;7(3):440-52. 178. Yuan J, Sun Y, Sang S, Pham JH, Kong W-J. The risk of cognitive impairment associated with hearing function in older adults: a pooled analysis of data from eleven studies. Sci Rep. 2018;8(1):1-10. 179. Ford AH, Hankey GJ, Yeap BB, Golledge J, Flicker L, Almeida OP. Hearing loss and the risk of dementia in later life. Maturitas. 2018;112:1-11. 180. Loughrey D. Age-related hearing loss & neurocognitive function: normal and pathological processes in cognitive ageing: Trinity College Dublin; 2017. 181. Idstad M, Engdahl B. Childhood sensorineural hearing loss and educational attainment in adulthood: results from the HUNT study. Ear Hear. 2019;40(6):1359-67. 60 WORLD REPORT ON HEARING 182. Järvelin MR, Mäki-Torkko E, Sorri MJ, Rantakallio PT. Effect of hearing impairment on educational outcomes and employment up to the age of 25 years in northern Finland. Br J Audiol. 1997;31(3):165-75. 183. Furlonger B. An investigation of the career development of high school adolescents with hearing impairments in New Zealand. Am Ann Deaf. 1998:268-76. 184. Jung D, Bhattacharyya N. Association of hearing loss with decreased employment and income among adults in the United States. Ann Otol Rhinol Laryngol. 2012;121(12):771-5. 185. Emmett SD, Francis HW. The socioeconomic impact of hearing loss in US adults. Otol Neurotol. 2015;36(3):545. 186. He P, Wen X, Hu X, Gong R, Luo Y, Guo C, et al. Hearing aid acquisition in Chinese older adults with hearing loss. Am J Public Health. 2018;108(2):241-7. 187. Helvik A-S, Krokstad S, Tambs K. Hearing loss and risk of early retirement. The HUNT study. The Eur J Pub Health. 2013;23(4):617-22. 188. Social isolation and loneliness in older adults: opportunities for the health care system. Washington, DC: The National Academies Press; 2020. 189. Shukla A, Harper M, Pedersen E, Goman A, Suen JJ, Price C, et al. Hearing loss, loneliness, and social isolation: a systematic review. Otolaryngol Head Neck Surg. 2020:162(5)622-633. 190. Hay-McCutcheon MJ, Reed PE, Cheimariou S. Positive social interaction and hearing loss in older adults living in rural and urban communities. J Speech Lang Hear Res. 2018;61(8):2138-45. 191. Peelle JE, Troiani V, Grossman M, Wingfield A. Hearing loss in older adults affects neural systems supporting speech comprehension. J Neurosci. 2011;31(35):12638-43. 192. Heine C, Browning CJ. The communication and psychosocial perceptions of older adults with sensory loss: a qualitative study. Ageing Soc. 2004;24(1):113-30. 193. Mick P, Pichora-Fuller MK. Is hearing loss associated with poorer health in older adults who might benefit from hearing screening? Ear Hear. 2016;37(3):e194-201. 194. Pronk M, Deeg DJ, Smits C, van Tilburg TG, Kuik DJ, Festen JM, et al. Prospective effects of hearing status on loneliness and depression in older persons: identification of subgroups. Int J Audiol. 2011;50(12):887-96. 195. Rutherford BR, Brewster K, Golub JS, Kim AH, Roose SP. Sensation and psychiatry: linking age-related hearing loss to late-life depression and cognitive decline. Am J Psychiatry. 2018;175(3):215-24. 196. Ray J, Popli G, Fell G. Association of cognition and age-related hearing impairment in the English Longitudinal Study of Ageing. JAMA Otolaryngol Head Neck Surg. 2018;144(10):876-82. 197. Deal JA, Reed NS, Kravetz AD, Weinreich H, Yeh C, Lin FR, et al. Incident hearing loss and comorbidity: a longitudinal administrative claims study. JAMA Otolaryngol Head Neck Surg. 2019;145(1):36-43. 198. Golub JS, Brewster KK, Brickman AM, Ciarleglio AJ, Kim AH, Luchsinger JA, et al. Association of audiometric age-related hearing loss with depressive symptoms among Hispanic individuals. JAMA Otolaryngol Head Neck Surg. 2019;145(2):132-9. 199. Blazer DG. Hearing loss: the silent risk for psychiatric disorders in late life. Psychiatr Clin North Am. 2018;41(1):19-27. 200. Linszen MM, Brouwer RM, Heringa SM, Sommer IE. Increased risk of psychosis in patients with hearing impairment: review and meta-analyses. Neurosci Biobehav Rev. 2016;62:1-20. 61CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA 201. Theunissen SC, Rieffe C, Kouwenberg M, Soede W, Briaire JJ, Frijns JH. Depression in hearing-impaired children. Int J Pediatr Otorhinolaryngol. 2011;75(10):1313-7. 202. Mitchell RE, KARCHMER M. Chasing the mythical ten percent: parental hearing status of deaf and hard of hearing students in the United States. Sign Lang Stud. 2004;4(2):138-63. 203. Vaccari C, Marschark M. Communication between parents and deaf children: Implications for social‐emotional development. J Child Psychol Psychiatry. 1997;38(7):793-801. 204. Whicker JJ, Muñoz K, Nelson LH. Parent challenges, perspectives and experiences caring for children who are deaf or hard-of-hearing with other disabilities: a comprehensive review. Int J Audiol. 2019;58(1):5-11. 205. Haddad KL, Steuerwald WW, Garland L. Family impact of pediatric hearing loss: findings from parent interviews and a parent support group. J Early Hearing Detection and Intervention. 2019;4(1):43-53. 206. Hands and Voices. Hands and Voices Chapters. 2018. Disponibile su: https://www. handsandvoices.org/index.htm, consultato dicembre 2020. 207. Mousavi SZ, Movallali G, Nare NM. Adolescents with deafness: a review of self-esteem and its components. Audit Vestib Res. 2017;26(3):125-37. 208. David D, Werner P. Stigma regarding hearing loss and hearing aids: a scoping review. Stigma and Health. 2016;1(2):59. 209. World Health Organization. Global costs of unaddressed hearing loss and cost- effectiveness of interventions: a WHO report, 2017. Geneva: World Health Organization; 2021. 210. McDaid D, Park AL, Chadha S. Estimating the global costs of hearing loss. Int J Audiol. 2021;16:1-9. 211. Taylor PS, Faeth I, Marks MK, Del Mar CB, Skull SA, Pezzullo ML, et al. Cost of treating otitis media in Australia. Expert Rev Pharmacoecon Outcomes Res. 2009;9(2):133-41. 212. Kim Y-E, Lee Y-R, Park S-Y, Lee KS, Oh I-H. The economic burden of otitis media in Korea, 2012: a nationally representative cross-sectional study. Biomed Res Int. 2016;2016. 62 WORLD REPORT ON HEARING Un intervento tempestivo avvantaggia le persone con problemi di udito e le loro famiglie* *Contribuito dalla Global Foundation For Children With Hearing Loss. Vedi: https://childrenwithhearingloss.org/ © P ai ge S tr in ge r 63CAPITOLO 1 L’IMPORTANZA DELL’UDITO NEL CORSO DELLA VITA ȉ0ia figlia, 1gu\en 1goc %ao 7ran, ha fatto il primo test dell’udito quando aveva 11 mesi e le è stata diagnosticata una perdita. La mia famiglia non poteva permettersi gli apparecchi acustici necessari per sviluppare le proprie capacità di ascolto e di conversazione. Il dottore ci ha detto che il fattore tempo era fondamentale. Ci ha detto che per avere la possibilità di imparare ad ascoltare e a parlare, i bambini con perdita dell’udito devono essere identificati il più presto possibile, dotati di una tecnologia acustica appropriata e ricevere la riabilitazione. Grazie al supporto di una fondazione internazionale, Bao Tran è stata dotata di un paio di apparecchi acustici di alta qualità quando aveva 17 mesi. Ricordo ancora il momento in cui l’ho chiamata per la prima volta e lei ha girato la testa per guardare verso di me. È stato il momento più felice della mia vita, sapere che mia figlia poteva sentire e che potrò parlare con lei! Certo, sapevo che gli apparecchi acustici erano solo il primo passo. C’era una lunga strada da percorrere e Bao Tran avrebbe avuto bisogno di terapia per molti anni per trasformare la mia speranza in realtà. Ora, dopo sei anni, io e la mia famiglia siamo felicissimi ogni giorno di vedere i suoi progressi. Bao Tran va a scuola indossando con orgoglio i suoi apparecchi acustici, insieme ad altri bambini della nostra comunità. È così loquace! Non riesco a farla smettere. Ha molti amici, ama cantare e i suoi insegnanti sono molto contenti di lei. Spero che tutti i bambini non udenti e ipoudenti possano avere le stesse possibilità di mia figlia, in modo da poter realizzare il proprio potenziale”. Nguyen Thi Hong Loan, la madre di Bao Tran

CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 65 CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA Soluzioni efficaci possono aiutare tutti coloro che sono a rischio o convivono con la perdita dell’udito. 2.1 SOMMARIO O Molte delle cause che conducono all’ipoacusia possono essere evitate attraverso strategie di sanità pubblica e interventi clinici mirati. O Prevenire l’ipoacusia è essenziale durante tutta la vita, dal periodo prenatale e perinatale, fino all’età avanzata. Nei bambini, quasi il 60% della perdita uditiva, è dovuta a cause evitabili che possono essere prevenute attraverso l’implementazione di misure di sanità pubblica. Nello stesso modo, nel caso degli adulti, le cause più comuni di ipoacusia possono essere prevenute, come nel caso dell’esposizione a rumori forti e a sostanze ototossiche. O Strategie efficaci per ridurre l’ipoacusia nelle diverse fasi di vita comprendono: – vaccinazioni; – buon livello di assistenza materna e infantile; – consulenze genetiche; – identificazione e trattamento delle comuni patologie dell’orecchio; – programmi di preservazione dell’udito in ambiente professionale e a seguito di esposizione a sostanze ototossiche; – strategie di ascolto protetto con riduzione dell’esposizione ad ambienti ricreativi ad alta intensità sonora; – uso razionale dei farmaci per prevenire la perdita dell’udito da cause ototossiche. O Le più comuni patologie dell’orecchio, come l’otite media, possono essere trattate clinicamente e chirurgicamente; il trattamento riduce i tassi di morbilità e mortalità associati e può prevenire o aiutare a recuperare la perdita d’udito determinata da tali condizioni. WORLD REPORT ON HEARING66 O I cambiamenti nei fattori di rischio di tipo modificabile incontrati durante il corso della vita di un individuo possono aiutare a mantenere costante l’evoluzione audiologica durante l’invecchiamento e possono influenzare l’evoluzione dell’ipoacusia in età più avanzata. O Gli impatti negativi di ipoacusia o malattie dell’orecchio in qualsiasi momento della vita di un individuo possono essere mitigati attraverso l’identificazione precoce seguita da interventi tempestivi e appropriati. O L’identificazione precoce dell’ipoacusia e delle malattie dell’orecchio è essenziale per una gestione efficace. I progressi della tecnologia forniscono strumenti in grado di identificare la perdita d’udito a qualsiasi età. Per facilitare questo processo, è importante sostenere programmi che mirino a: – neonati e soggetti in età infantile; – bambini in età scolare; – tutti coloro che sono a maggior rischio di perdita d’udito per esposizione a rumore, sostanze e farmaci ototossici; – soggetti più anziani. O La valutazione dell’udito e l’esame dell’orecchio possono essere condotti in ospedale e in ambulatorio, così come sul territorio. Strumenti come l’“hearWHO” e altre soluzioni basate sulla tecnologia, permettono di effettuare lo screening per le malattie dell’orecchio e per l’ipoacusia in contesti scolastici e di comunità con risorse e formazione limitate. O Dopo aver identificato l’ipoacusia, è essenziale che questa venga trattata il più precocemente possibile e in maniera appropriata per mitigare qualunque suo impatto avverso sulla vita dell’individuo. Tali strategie di intervento precoce devono adottare un approccio basato sulla persona, prendendo in considerazione i bisogni e le preferenze comunicative dell’individuo, così come le risorse disponibili. O Le misure disponibili per la riabilitazione di coloro che sono affetti da ipoacusia comprendono: – uso di tecnologia audiologica attraverso protesi acustiche, impianti cocleari e impianti dell’orecchio medio; – uso della lingua dei segni e di altri mezzi di ausilio sensoriale come la lettura labiale, la scrittura sulla mano o tecniche di comunicazione come il metodo Tadoma; – terapia riabilitativa per rafforzare le abilità percettive e sviluppare le abilità comunicative e linguistiche. O L’uso di tecnologia di ausilio audiologico e di strumenti che determinano modulazione delle frequenze, di sistemi a circuito chiuso, di device di allarme e di telecomunicazione, di strumenti di sottotitolazione e interpretazione della lingua dei segni, può migliorare ancora di più l’accesso alla comunicazione e all’istruzione per persone non udenti. La curva audiologica è influenzata da fattori tra cui le strategie di sanità pubblica come descritto nel Capitolo 1. Il Capitolo 2 presenta soluzioni per la prevenzioni dell’ipoacusia. CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 67 Strategie efficaci di sanità pubblica e interventi clinici possono, in molti casi, prevenire l’esordio o la progressione dell’ipoacusia. 2.2 PREVENZIONE DELL’IPOACUSIA E DELLE PATOLOGIE DELL’ORECCHIO Il Capitolo 2.2 si rifà alle azioni di prevenzione per la preservazione dell’udito che erano state esposte nel Capitolo 1 e si concentra sulle azioni da effettuare ad un livello di popolazione per la prevenzione dell’ipoacusia e delle patologie dell’orecchio. Dal momento che è probabile che alcune patologie o situazioni ambientali interessino gli individui in specifiche fasce d’età, le strategie di prevenzione devono essere studiate in modo da essere destinate a queste determinate fasce d’età. Molte di queste, tuttavia, sono applicabili a molti o a tutti gli stadi della vita di un individuo (Fig. 2.1). Figura 2.1 Strategie di prevenzione dell’ipoacusia durante il corso della vitaFigure 2.1 Strategies for hearing loss prevention across the life course Occupational noise control 6afe liࢌening practices in recreational settings Noise control in entertainment venues Ototoxicity prevention PRENATAL AND PERINATAL PERIODS CHILDHOOD AND ADOLESCENCE ADULTHOOD ACROSS THE LIFE COURSE Immunization in girls and Zomen Maternal and neonatal care *enetic counselling Immunization (cKildren) Otitis media early identification and treatment PERIODO PRENATALE E PERINATALE INFANZIA E ADOLESCENZA ETÀ ADULTA DURANTE IL CORSO DELLA VITA Vaccinazione delle ragazze e delle donne Assistenza sanitaria materna e neonatale Valutazioni genetiche Pratiche di ascolto sicure in situazioni ricreative Controllo dell’esposizione in ambienti aggregativi ad alta intensità sonora Prevenzione dell’ototossicità Controllo dell’esposizione al rumore sui luoghi di lavoro Vaccinazioni i età pediatrica ,dentificazione e trattamento precoce dell’otite media WORLD REPORT ON HEARING68 2.2.1 PERIODI DI VITA PRENATALE E PERINATALE Si stima che circa il 60% della sordità infantile sia dovuto a cause evitabili come malattie prevenibili con la vaccinazione, infezioni dell’orecchio, eventi correlati alla nascita e farmaci ototossici (1). La prevenzione della sordità congenita e infantile durante i periodi di vita prenatale e perinatale comprende: VACCINAZIONE DELLE RAGAZZE E DELLE DONNE La vaccinazione per la rosolia prima o durante l’età riproduttiva è estremamente efficace nella prevenzione della rosolia congenita nella prole (2, 3). Gli studi attualmente in corso sulla prevenzione dell’infezione da CMV offrono risultati incoraggianti, anche se in assenza di un vaccino (4). ASSISTENZA SANITARIA MATERNA E NEONATALE Esiste una correlazione chiara tra l’assistenza sanitaria materna prenatale e perinatale e lo stato audiologico del bambino. L’evidenza dell’impatto positivo dell’assistenza prenatale e perinatale sulla morbidità neonatale è inequivocabile (6). Nonostante non ci siano studi che dimostrano un legame diretto tra il miglioramento dell’assistenza materna e l’ipoacusia, appare evidente che tali risultati si evidenzierebbero anche sull’ipoacusia (7, 8). Nel caso di madri con infezione da sifilide, CMV, toxoplasma o HIV, un trattamento tempestivo può mitigare il rischio di sordità congenita che è associato a queste patologie (7, 9, 10). Inoltre è importante assicurarsi che vengano seguiti protocolli appropriati basati sull’evidenza al fine di minimizzare gli effetti ototossici dei farmaci sia sulla madre che sul bambino. La disponibilità e l’utilizzo di misure di rianimazione appropriate, così come l’assistenza perinatale per la prevenzione e per il trattamento dell’asfissia neonatale, dell’ittero e delle infezioni perinatali, minimizza gli effetti avversi di questi fattori di rischio (11). Tutto questo è in netto contrasto con la situazione vissuta da bambini nati in ambienti dove le strutture sanitarie non sono disponibili o dove manca l’assistenza sanitaria e che pertanto sono esposti a un rischio maggiore di effetti immediati o tardivi sulla loro curva audiologica nel corso della vita. La consapevolezza tra gli operatori sanitari di questi fattori di rischio, della loro associazione con la sordità congenita e delle caratteristiche comuni che potrebbero indicare perdita dell’udito in un bambino, possono essere d’aiuto nella sua identificazione precoce. La vaccinazione su larga scala negli ultimi 10 anni la ha praticamente eliminata la rosolia e la sindrome da rosolia congenita in molti paesi. Nel 2015 la Regione OMS delle Americhe è diventata la prima al mondo ad essere dichiarata libera dalla trasmissione endemica della rosolia. Al dicembre 2016, 152 dei 194 Stati membri dell’OMS avevano introdotto la vaccinazione per la rosolia, con una copertura vaccinale compresa tra il 13% e il 99% (5). CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 69 VALUTAZIONE GENETICA Nelle famiglie con storia di sordità, una valutazione genetica può preparare i genitori ad affrontare la sordità della prole e offrire una guida per una sua identificazione e riabilitazione precoce. Il counselling genetico prevede l’esposizione di informazioni accurate in forma non impositiva con lo scopo di offrire sostegno clinico, psicologico e sociale (12). Questi servizi di counselling devono sempre tenere in considerazione le credenze e i valori delle comunità sorde (13). Data la correlazione tra la sordità congenita e la consanguineità dei genitori, la sensibilizzazione su questo argomento e l’assicurare l’accesso a servizi di counselling preconcezionale e prematrimoniale per le coppie consanguinee, può aiutare a mantenere e migliorare i risultati, tra cui la prevenzione della sordità, la sua identificazione e il trattamento (14, 15). 2.2.2 ETÀ INFANTILE E ADOLESCENZA Molti dei fattori di rischio per sordità e patologie dell’orecchio che si presentano durante la prima infanzia e in età scolare, possono essere prevenuti o trattati. VACCINAZIONE DEI BAMBINI E DEGLI ADOLESCENTI Secondo le stime dell’OMS, più del 19% della sordità infantile potrebbe essere prevenuta soltanto con la vaccinazione contro la rosolia e la meningite (1). In generale i vaccini sono molto efficaci nella protezione contro patologie di frequente riscontro come il morbillo, la parotite, la rosolia e la meningite, e possono così prevenire la sordità che esordisce come loro complicanza (16,17). Le vaccinazioni contro batteri e virus comuni, come il virus dell’influenza, che sono correlate all’insorgenza dell’otite media, sono parimenti utili nella riduzione della sua incidenza (21-13) (vedi Box 2.1). È importante che questi fattori vengano considerati dai Paesi del mondo durante la pianificazione della copertura vaccinale e che vengano implementate politiche vaccinali efficaci in linea con gli obiettivi globali e con le priorità nazionali. La consapevolezza tra gli operatori sanitari delle manifestazioni dell’ipoacusia congenita, inclusa la conoscenza delle caratteristiche cliniche delle sindromi più frequenti, può aiutare nell’identificazione precoce della sordità. WORLD REPORT ON HEARING70 BOX 2.1 Vaccinazione per la protezione dall’otite media “L’obiettivo dei vaccini è quello di ridurre o eliminare la colonizzazione naso-faringea dello S. pneumoniae, H. influenzae non tipizzabile e M. catarrhalis. Il vaccino PCV eptavalente (PCV7) è arrivato negli Stati Uniti e in molti paesi europei nel 2000. Il PCV7 è stato associato ad una riduzione del 29% dell’OMA causata dai serotipi pneumococcici contenuti nel vaccino, una riduzione del 6-7% nell’otite media in generale e con una riduzione del 20% nell’uso dei drenaggi trans-timpanici per l’otite media cronica recidivante. Il PCV13, arrivato un decennio più tardi, è stato associato ad una ulteriore riduzione dell’OMA, della mastoidite e dell’utilizzo dei drenaggi trans-timpanici” (21). “In Corea, il carico economico associato all’otite media si è ridotto da 530.11 milioni del 2004, prima dell’introduzione dei vaccini PCV7 e PCV13 a 497.35 milioni del 2012, dopo l’introduzione di questi vaccini” (24). OTITE MEDIA: IDENTIFICAZIONE E TRATTAMENTO PRECOCE L’identificazione e il trattamento precoce dell’otite media consentono di prevenire l’insorgenza e la progressione dell’ipoacusia. Dal momento che l’otite media cronica suppurativa tipicamente consegue ad una otite media acuta (OMA) non trattata, bisognerebbe adoperarsi per identificare e gestire l’OMA così da prevenire la sua recidiva ed evitare infezioni croniche dell’orecchio (7, 25-27). Una valutazione e un trattamento appropriato delle persone affette da otite media cronica suppurativa e otite media non suppurativa, attraverso mezzi clinici e chirurgici, può prevenire o far regredire gli effetti sull’udito, e nel frattempo mitigare il rischio di infezioni ricorrenti (25, 27). Considerazioni importanti da fare nell’identificazione e nel trattamento dell’otite media comprendono: • Otite media acuta - Mentre si dibatte sull’adozione di un approccio a favore dell’utilizzo di antibiotici verso un approccio di vigile attesa, è importante che nei posti in cui le complicanze (come la mastoidite) sono ancora frequenti e dove non vi è certezza di un follow-up appropriato, venga raccomandato l’uso degli antibiotici così da assicurare una risoluzione efficace ed evitare le complicanze (26). • Otite media non suppurativa o otite media effusiva (OME) - Queste forme possono essere trattate attraverso l’uso di antibiotici, attraverso l’inserimento di grommet e con l’adenoidectomia. Il tipo esatto di intervento deve essere determinato basandosi sulle indicazioni e sui bisogni clinici (21, 28-32). Per questa ragione è importante che le persone affette da otite media non suppurativa/OME vengano trattate da un professionista qualificato che possa curare la loro patologia oppure indirizzarle verso un otorinolaringoiatra. Un otochirurgo e il suo team intervengono chirurgicamente su un paziente con otite media cronica suppurativa © Ja m es S au nd er s, M ay flo w er M ed ica l O ut re ac h CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 71 • Otite media cronica suppurativa - Questa patologia deve essere trattata al fine di assicurare: (i) eradicazione dell’infezione responsabile della morbidità e della mortalità associata all’otite media cronica suppurativa; (ii) chiusura della perforazione della membrana timpanica senza la quale l’ipoacusia dovuta alla reinfezione dell’orecchio medio potrebbe rappresentare una minaccia costante (27). L’eradicazione dell’infezione è resa possibile da una cura adeguata attraverso la toilette chirurgica della sede di infezione con o senza l’uso di antibiotici locali o antisettici (33, 34). Il trattamento chirurgico dell’otite media cronica suppurativa si rende a volte necessario sia per la rimozione del focolaio di infezione che per la riparazione chirurgica della membrana timpanica e delle strutture dell’orecchio medio. Tali procedure chirurgiche, come la mastoidectomia, la timpanoplastica e la miringoplastica, sono ormai affermate e altamente efficaci nella cura della malattia e nella riduzione dell’ipoacusia ad essa associata (21, 35-37). È importante valutare correttamente ogni individuo affetto da otite media cronica suppurativa e che ogni decisione riguardo l’intervento chirurgico venga presa consultando uno specialista otorinolaringoiatra. Le informazioni sulle opzioni di trattamento per l’otorrea, frequente in individui affetti da questa patologia, sono descritte nel Box 2.2. BOX 2.2. Otorrea: gestione medica e chirurgica L’otorrea e l’ipoacusia ad essa associata possono e devono essere trattate accedendo ad una assistenza medica specialistica (38). Il fine del trattamento dell’otorrea è quello di ottenere un orecchio privo di secrezioni, libero da infezioni e di correggere l’ipoacusia. Mentre in alcuni casi i trattamenti medici riescono a controllare le secrezioni e a migliorare l’udito, spesso è necessario ricorrere ad un trattamento chirurgico per una rimozione efficace del focolaio di infezione e per un miglioramento dell’udito nel lungo termine. Le terapie più frequentemente utilizzate comprendono: Lavaggio auricolare (38-40): La pulizia dell’orecchio o toilette auricolare consiste nel rimuovere secrezioni, pus, e residui dall’orecchio utilizzando varie tecniche. Questo trattamento può essere effettuato individualmente dal paziente, dai suoi familiari, da un operatore sanitario qualificato o dal medico di medicina generale. Le tecniche includono il tamponamento, l’aspirazione e l’irrigazione dell’orecchio. Il beneficio dell lavaggio auricolare consiste nel poter essere effettuato frequentemente e nel richiedere una strumentazione e una esperienza di base. Nonostante ciò, il lavaggio auricolare non deve essere considerata l’unico trattamento per l’otorrea. La gestione medica e chirurgica appropriata dell’otite media è di vitale importanza per curare queste patologie e ridurre l’ipoacusia ad esse associata WORLD REPORT ON HEARING72 Nota: È essenziale che ai pazienti venga insegnato a prendersi cura dell’orecchio con secrezioni. Le indicazioni per la cura primaria dell’orecchio e dell’udito fornite dall’OMS15 offrono linee guida e informazioni sia per gli operatori sanitari che per i pazienti. Uso degli antibiotici (40): Gli antibiotici possono essere somministrati sotto forma di gocce auricolari o sotto forma di terapia per bocca. Le gocce auricolari associate alla pulizia auricolare rappresentano il tipo di trattamento più frequentemente utilizzato per l’otorrea. Trattamenti chirurgici (38, 40-44): Gli interventi chirurgici effettuati da specialisti ORL qualificati rappresentano spesso il trattamento di scelta per fermare l’otorrea ricorrente non controllata e migliorare l’udito nel lungo termine. Tali interventi comprendono la timpanoplastica, la mastoidectomia, la ricostruzione della catena ossiculare, o spesso una combinazione di queste procedure. La chirurgia per l’otite media cronica suppurativa può essere effettuata anche in contesti con risorse più limitate e viene considerata adeguata dal punto di vista della costo- efficacia. La chirurgia dell’orecchio effettuata da chirurghi qualificati è associata al miglioramento dell’udito nel lungo termine. 15 WHO primary ear and hearing care training resources https://www.who.int/pbd/deafness/activities/hearing_care/en/ CASE STUDY L’otite media è curabile: un caso clinico dal Nicaragua Josue aveva sei anni quando sua madre si accorse di un cambiamento nel suo comportamento - dall’essere un bambino sicuro di sé e in tono sommesso, fino a diventare irritabile e distratto. La mamma si accorse anche che Josue spesso doveva aumentare il volume della televisione in casa. Ma è stato solo quando i suoi voti a scuola iniziarono a peggiorare che i suoi genitori decisero di portarlo dal medico di medicina generale del villaggio. Nel momento in cui le gocce auricolari prescritte dal medico non sortirono alcun effetto, la famiglia si recò ad Esteli, la città più vicina per una visita otorinolaringoiatrica. Lo specialista fece diagnosi di otite media e indirizzò Josue ad un trattamento otochirurgico. Dal momento che, a quel tempo, la chirurgia specialistica veniva effettuata solo a Managua, la capitale, i genitori di Josue intrapresero un viaggio attraverso il paese. Nonostante le difficoltà finanziarie, erano determinati a far ricevere al figlio le cure di cui aveva così disperatamente bisogno. Dopo il trattamento chirurgico, i sintomi di Josue migliorarono enormemente e ritornarono a casa. Nei mesi successivi il suo udito migliorò così come il suo umore e le sue performance scolastiche. Oggi, Josue è di nuovo il primo della classe e ha moltissimi amici. Deve ancora recarsi regolarmente ad Esteli per le visite di controllo, e i suoi genitori si assicurano che non ne perda nemmeno una. CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 73 EFFICACIA DELLA PREVENZIONE E DEL TRATTAMENTO DELLE PATOLOGIE DELL’ORECCHIO Gli strumenti medici e chirurgici per la gestione delle più comuni patologie dell’orecchio, come il tappo di cerume e l’otite media, sono efficaci e adeguati in termini di costo- efficacia nel ridurre l’ipoacusia e la morbidità ad esse associate e le loro complicanze (26, 30, 34, 45-53). Affrontare le patologie dell’orecchio migliorerebbe i tassi di mortalità dovuti alla loro trascuratezza (54). CASE STUDY In Australia, il governo del Queensland compie dei passi da gigante nella cura dell’otite media infantile (55) I bambini delle popolazioni aborigene e delle Isole dello Stretto di Torres hanno uno dei più alti tassi mondiali di otite media infantile - in particolare quelli che vivono nelle zone rurali e remote della regione. Per affrontare questo problema, il governo del Queensland, nel 2009, ha sviluppato il Progetto “Deadly Ears Deadly Kids Deadly Communities”, mirando a ridurre in modo significativo gli alti tassi di otite media suppurativa nei bambini aborigeni. Il programma “Deadly Ears”, che fa capo a questo Progetto, offre assistenza sanitaria di primo livello attraverso un team multidisciplinare (con assistenza primaria e specialistica otorinolaringoiatrica e con un’alleanza tra operatori sanitari e insegnanti) e sviluppa competenze lavorative locali in 11 località tra le regioni rurali e più remote del Queensland aderenti al Progetto. Il team del programma coordina l’accesso a servizi specialistici e a programmi di riabilitazione. Questo modello facilita e standardizza il processo di sensibilizzazione, identificazione, diagnosi e trattamento dell’otite media, in particolare per i bambini più piccoli, a causa delle implicazioni dell’ipoacusia sullo sviluppo e sull’istruzione nella prima infanzia. Durante l’evoluzione del programma, il tasso dei bambini da 0 a 4 anni che ha ricevuto servizi di cura dell’orecchio e dell’udito è aumentato dal 53% (2014) al 94% (2018). 2.2.3 ETÀ ADULTA E AVANZATA Nonostante il processo di invecchiamento sia inevitabile, l’ipoacusia ad esso associata non può essere considerata tale. È ormai ben chiaro che l’ipoacusia associata al progredire dell’età è una condizione multifattoriale di cui l’invecchiamento cocleare/ neurale costituisce soltanto una parte. La perdita dell’udito è influenzata da diversi fattori determinanti come fattori genetici (56), patologie dell’orecchio preesistenti, malattie croniche e fattori ambientali come esposizione a rumore, uso di farmaci ototossici e stile di vita. Cambiamenti nei fattori di rischio modificabili possono alterare il corso della curva audiologica di un individuo e influenzare il grado di ipoacusia nel corso degli anni (57). WORLD REPORT ON HEARING74 2.2.4 FATTORI CHE INFLUENZANO LO SVILUPPO DELL’IPOACUSIA RIDURRE L’ESPOSIZIONE AD INTENSITÀ SONORE PERICOLOSE L’esposizione a suoni ad alta intensità ha effetti che danneggiano le strutture cocleari di vitale importanza per l’udito. Questo fattore di rischio può essere mitigato proteggendo le orecchie contro tale esposizione (58) attraverso: • Programmi di tutela dell’udito in contesti occupazionali I programmi di tutela dell’udito sono in grado di ridurre l’esposizione giornaliera al rumore da parte dei lavoratori e limitare l’impatto sulle cellule ciliate cocleari e, quindi, sulla loro curva audiometrica (59). Come descritto nella Figura 2.2, i programmi di tutela dell’udito occupazionali comprendono i seguenti: (58–61) i. Ingegnerizzazione e controlli di sicurezza volti a garantire la riduzione dei livelli di rumore e l’esposizione ad essi. Tali misure comprendono la riduzione o l’eliminazione della fonte del rumore; il cambiamento di materiali, processi o della disposizione del luogo di lavoro. Altre azioni da intraprendere comprendono l’acquisto di macchinari più silenziosi, l’isolamento delle fonti rumorose; l’installazione di pannelli o tende attorno alle fonti di rumore e altre misure analoghe. Le politiche di gestione del personale possono comprendere la rotazione dei lavoratori tra ambienti rumorosi e non, e la garanzia di informazione e formazione continua su questo ambito. ii. Monitoraggio del rumore. Il monitoraggio garantisce che i livelli di rumore e i periodi di esposizione ad esso rimangano entro i livelli raccomandati. Un livello di 85Db16 è considerato il livello massimo permesso durante 8 ore in un contesto di lavoro (62, 63). Se il livello del rumore diventa più alto, il periodo di tempo deve essere consequenzialmente ridotto (basandosi su una variazione di circa 3 dB - v. Box 2.3). iii. Utilizzo di otoprotettori. L’utilizzo comprende la fornitura di dispositivi come cuffie e tappi auricolari, così come una formazione di base adeguata al loro corretto utilizzo. Se usati correttamente, gli otoprotettori riescono ad attenuare in maniera significativa la quantità di rumore che raggiunge l’orecchio. iv. Formazione. Elementi essenziali di un programma di tutela dell’udito comprendono la formazione sugli effetti e sul controllo del rumore, sull’impatto dell’ipoacusia e sulla sua prevenzione. I lavoratori, specialmente quelli maggiormente esposti a rumore, dovrebbero essere adeguatamente formati sull’udito, sull’utilizzo dei mezzi di otoprotezione e sulla sorveglianza sanitaria. Bisognerebbe fornire informazioni riguardanti i livelli di rumore, l’esposizione, i rischi e la loro mitigazione attraverso segnaletica di pericolo, volantini e comunicazioni. 16 dBA si riferisce ai livelli di pressione del suono espressi in decibel, utilizzando la curva di Pesatura A che è comunemente utilizzata per la misurazione dell’esposizione al rumore occupazionale e ambientale CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 75 La prevalenza dell’ipoacusia indotta da rumore sta diminuendo nella maggior parte dei paesi industrializzati, molto probabilmente a causa dell’adozione di misure preventive (65). HEARING SURVEILLANCE NOISE MONITORING THE USE OF HEARING PROTECTORS EDUCATIONENGINEERING AND ADMINISTRATIVE CONTROLS FOR THE REDUCTION OF NOISE LEVELS AND EXPOSURE Figura 2.2 Componenti di un programma occupazionale di tutela dell’udito I GEGN IZZAZIONE E CONTROLLI DI SICUREZZA PER LA RIDUZIONE DEI LIVELLI E DELL’ESPOSIZIONE RUMORE IZZAZIONE LLI DI SICUREZZA PE LA RIDUZIONE DEI LIVELLI E DELL’ESPOSIZIONE A RUMORE M NITORAGGIO DEL RUMORE UTILIZZO DI DISPOSITIVI DI OTOPROTEZIONE FORM ZI E SORVEGLIANZA AUDIOLOGICA v. Sorveglianza dell’udito. Il monitoraggio dei livelli audiologici dei lavoratori esposti dovrebbe essere effettuato attraverso una valutazione audiometrica di base e con successivi controlli regolari. Qualora si dovesse rilevare e validare un cambiamento audiologico, è importante intraprendere tempestivamente azioni appropriate al fine di proteggere il lavoratore da ulteriore esposizione. In aggiunta alla regolare valutazione audiometrica, il monitoraggio quotidiano dell’esposizione al rumore è efficace nel promuovere la salvaguardia dell’udito. I programmi di tutela dell’udito sono stati implementati in molti paesi europei all’inizio del millennio. In Francia, Italia, Regno Unito e Repubblica Ceca è stato riportato un declino nell’incidenza della ipoacusia causata da rumore negli ultimi anni. In Francia l’incidenza di ipoacusia determinata da rumore diagnosticata dai medici è calata del 17% tra il 2007 e il 2012 (64). Una implementazione migliore di questi programmi, associata ad un severo rispetto delle leggi, è in grado di ridurre i livelli di rumore nei luoghi di lavoro, mitigando così l’impatto negativo sulla curva audiologica di coloro che ne sono esposti (58, 60). • Pratiche di ascolto in sicurezza in contesti ricreativi. A differenza di quanto avviene con l’esposizione uditiva in ambito occupazionale, le persone spesso si espongono volontariamente a livelli sonori pericolosi durante l’ascolto di musica con auricolari, sistemi audio stereo o durante concerti dal vivo, in discoteche, eventi sportivi, con l’uso ricreativo di armi da fuoco o anche in palestra (66-68). Livelli sicuri di esposizione a rumore ricreativo vengono descritti nel Box 2.3.     ATTENZIONE ZONA A RISCHIO ACUSTICO_ È Obbligatorio Proteggere L’udito WORLD REPORT ON HEARING76 Box 2.3 Limiti di esposizione per il rumore ricreativo Il livello massimo di esposizione per il rumore ricreativo è l’equivalente di 80 dB per 40 ore a settimana (69). Il principio della conservazione dell’energia stabilisce che l’effetto totale del suono sull’orecchio è proporzionale alla quantità totale di energia sonora che lo raggiunge, indipendentemente dalla sua distribuzione nel tempo, e che la quantità di energia raddoppia per ogni aumento di 3 dB dell’intensità del suono (69, 70). Quindi una persona potrebbe ricevere la stessa “dose di rumore” sia ascoltando musica a 80 dB per 8 ore al giorno, che ascoltandone a 100 dB per circa 4 minuti. Proteggersi durante i momenti ricreativi costituisce un fattore chiave nell’influenzare la curva audiologica di un individuo. Le pratiche di ascolto sicuro che limitano l’esposizione sonora attraverso dispositivi audio personali (71) e durante i concerti, per esempio attraverso l’uso dei tappi per le orecchie (72), possono aiutare a prevenire il danno acustico e, così facendo, a preservare potenzialmente la capacità audiologica nel tempo (66, 67). Specifiche misure di sanità pubblica possono promuovere questi comportamenti sicuri, attraverso, per esempio: i. Sviluppo e implementazione di programmi scolastici sulla preservazione dell’udito: tali programmi informano sia i genitori che i figli e dovrebbero basarsi sull’Health Belief Model17 ed essere finalizzati a modificare i comportamenti di ascolto dei giovani che spesso, invece, ascoltano musica in maniera pericolosa per l’udito (66,67,71). Tali programmi dovrebbero essere mirati a trasmettere conoscenze in merito all’udito, al rumore, all’ipoacusia e ai fattori di rischio modificabili per l’ipoacusia; allo sviluppo di pratiche di ascolto sicuro, come attraverso l’utilizzo di otoprotettori; all’uso di auricolari isolanti; alla prevenzione dalla sovraesposizione al rumore attraverso la riduzione del volume (66,71). Allo stesso tempo, i programmi devono far sì che gli auricolari o gli altri dispositivi che proteggono dal rumore non interferiscano con la sicurezza personale. ii. Implementazione dello standard WHO-ITU per dispositivi di ascolto sicuri: molte persone che fanno uso di dispositivi audio personali hanno abitudini di ascolto che li mette a rischio di perdita uditiva (70,71). Studi condotti in altri ambiti della salute suggeriscono che le piattaforme digitali, le applicazioni degli smartphone e i dispositivi mobili potrebbero rappresentare mezzi utili all’adozione di comportamenti e stili di vita più salutari. Nonostante le evidenze scientifiche siano al momento scarse e di significato incerto, bisogna riconoscere le potenzialità di tali piattaforme digitali nella promozione dei comportamenti salutari, specialmente se sono basate su teorie di cambiamento del comportamento sonoro, se sono user-friendly, se sono culturalmente appropriate, accurate e personalizzate (73- 78). L’uso della tecnologia nel benessere dell’udito e nell’ascolto sicuro non è 17 L’Health Belief Model deriva da teorie psicologiche e comportamentali. Suggerisce che la credenza di una persona nella pericolosità di una malattia, assieme alla credenza nell’efficacia del trattamento prescelto, è capace di predire la probabilità che quell’individuo adotti quel comportamento. (Rosenstock 1974), I.M. Rosenstock. The Health Belief Model and preventive health behavior, Health Educ. Monogr., 1 (December (4) (1974), pp. 354-386) CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 77 ancora stato sistematicamente studiato. Nonostante ciò, partendo da studi che coinvolgono altri campi della salute di un individuo, ci sono possibilità promettenti per l’uso della tecnologia in tal senso - ad esempio applicazioni degli smartphone, messaggi, computer, internet - come mezzo per cambiare le abitudini e i comportamenti di ascolto (57). Al fine di facilitare ciò, la WHO, in collaborazione con l’Unione Internazionale delle Telecomunicazioni e altri organi interessati, ha emanato una serie di raccomandazioni sulle caratteristiche dell’ascolto sicuro che dovrebbero essere incluse nei cellulari, lettori MP3, auricolari/cuffie e altri dispositivi usati per l’ascolto (vedi Box 2.4). Questo standard globale può essere implementato volontariamente dalle aziende costruttrici dei dispositivi, ma può anche essere forzato attraverso politiche governative. Box 2.4 Lo standard globale WHO-ITU H.870 per dispositivi e sistemi di ascolto sicuri* Lo standard globale WHO-ITU mira alla regolazione dell’esposizione a fonti rumorose attraverso dispositivi/sistemi audio personali e alla mitigazione del rischio di ipoacusia associata al loro utilizzo. Le raccomandazioni stabiliscono che: 1. Ogni dispositivo deve misurare la tolleranza acustica dell’ascoltatore durante l’uso, basandosi su due modelli di riferimento per l’esposizione sonora: • Modalità 1 per adulti: 80 dBA per 40 ore a settimana • Modalità 2 per utenti sensibili (es. bambini): 75 dBA per 40 ore a settimana. 2. Ogni dispositivo deve includere delle opzioni per la limitazione e il controllo del volume da parte dei genitori. 3. Ogni dispositivo deve fornire all’utente: • informazioni sull’utilizzo personale • messaggi personalizzati e suggerimenti sulle azioni da intraprendere • informazioni generali sull’ascolto sicuro. * Vedi: https://www.who.int/publications-detail/safe-listening-devices-and-systems-a-who-itu-standard • Controllo del rumore nei luoghi di ritrovo Come sottolineato in precedenza, l’implementazione di leggi che regolano il controllo del rumore sui luoghi di lavoro si è dimostrata una strategia fondamentale ed efficace. Nonostante l’esposizione occupazionale al rumore non possa essere paragonata all’esposizione volontaria e voluttuaria a cui ci si sottopone per fini ricreativi, ci sono insegnamenti da trarre da quel campo. Le politiche, le leggi e la loro applicazione sono capaci di influenzare il comportamento individuale e il successo che si ottiene dall’adozione di questi interventi è evidente in numerosi campi della sanità pubblica. Esempi di questo tipo comprendono gli avvisi grafici obbligatori sui pacchetti di sigarette o le multe da 18 Today’s sound allowance Sound track #5 Disclosure 51.6% Time left: 01:14:17 Today’ Listening time: 37 min Average dB level (leg) : 93.3 dB 90 80 70 60 50 40 30 20 10 0 52% Today’s sound allowance 52% Today’s sound allowance Sound track #5 Disclosure 119.5% Time left: 01:14:17 Today’ Listening time: 37 min Average dB level (leg) : 93.3 dB 90 80 70 60 50 40 30 20 10 0 119.5% Today’s sound allowance 52% Figure 2: Examples of information provided on a smartphone visual interface for safe listening. (Reproduced with kind permission from ITU H.870) The device (if capable) should display: • the average sound level for the day and week. • the time for which the user has listened in hours and minutes over the day and the week. Personalized recommendations and cues for actions for safe listening, customized based on each user’s listening profile The device should give relevant warnings and cues for actions when the user reaches pre-determined levels of exposure (e.g. 80%) and exceeds 100% of the weekly allowance. • The user should receive a “warning” expressed through text and graphics or an icon, informing them that a threshold has been reached and that from this point on, further listening at the same volume will pose a risk for their hearing. accessible to users in order to allow them to keep track of their exposure to sound through the device. In case of devices with a screen, this could be through an icon on the screen (Figure 2 gives an example of information provided on a smartphone visual interface for safe listening). Through the icon, the user should be able to see their use of daily or weekly sound allowance in an easy-to-understand way, e.g. the person may be able to view how much of the weekly sound allowance has been used and how their listening behaviour has been over the past week. I devices without a screen, the information should be made available through other means, such as audio cues. L’integrazione di meccanismi per l’ascolto sicuro negli smartphone li rende di più facile accesso per gli u enti. © IT U H .8 70 WORLD REPORT ON HEARING78 pagare per la violazione delle leggi che regolano l’utilizzo delle cinture di sicurezza in automobile (79-82). Alla luce di tutto questo, si pensa che il disegno e l’implementazione di una legislazione specifica che possa regolare l’esposizione sonora e la sua gestione possa essere potenzialmente efficace e al contempo sensibilizzare l’opinione pubblica sui rischi dati dall’ascolto a volumi elevati. Si prevede inoltre che con la diffusione più ampia di una regolamentazione riguardo questo ambito e con l’aumento del numero di luoghi ricreativi più collaborativi, aumenterà anche l’accettazione di comportamenti volti all’otoprotezione. (83). A questo scopo, l’OMS sta sviluppando un “Piano per il controllo dell’esposizione a fonti rumorose in luoghi ricreativi”, la cui pubblicazione è prevista nel corso del 2021. Componenti di questo piano globale comprendono: limitazioni ai livelli sonori; misurazione del suono; offerta di dispositivi otoprotettivi; divulgazione di informazioni e avvisi; creazione di zone silenziose; distribuzione e gestione del suono. CASE STUDY La Svizzera fa dei passi avanti nell’affrontare l’ipoacusia dovuta a suono ricreativo (84) La Svizzera possiede le più antiche leggi al mondo che regolano l’intensità sonora nei luoghi ricreativi. L’Ufficio Federale di Sanità Pubblica svizzero ha pubblicato la prima “Ordinanza su stimoli sonori e raggi laser” nel 1996, che ne regolava l’intensità in quei luoghi ricreativi in cui il pubblico è esposto a suoni elettroacustici o amplificati (es. pub, sale da concerto, bar, ristoranti, festival, discoteche). Le leggi sono state scritte e revisionate (l’ultima volta nel 2019) in stretta collaborazione con l’industria musicale svizzera. Le leggi sono ora ben accette da tutte le parti interessate, compresi i luoghi in cui devono essere implementate. Tali leggi impongono ai luoghi ricreativi di: (i) limitare i livelli sonori medi orari a 100 dBA; (ii) misurare e registrare i livelli del suono; (iii) offrire gratis tappi per le orecchie al pubblico; (iv) mostrare informazioni e cartelli sull’ascolto sicuro; (v) offrire “zone silenziose” per eventi la cui durata supera le tre ore. Da quando sono state implementate, tutti i cantoni svizzeri hanno applicato queste leggi. Come possibile conseguenza di ciò, il 39% dei partecipanti ai festival in Svizzera ora indossa otoprotezioni - una percentuale di gran lunga più alta rispetto a quelle registrate in altri Paesi. CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 79 EFFICACIA DELLE MISURE DI RIDUZIONE DEL RUMORE • L’adozione e l’osservanza stretta delle leggi è efficace nel ridurre i livelli di rumore nei luoghi di lavoro, e in questo modo limita l’esposizione a cui sono sottoposti i lavoratori, riducendo così l’ipoacusia (60, 64, 85, 86). Per esempio, leggi mirate a una migliore osservanza della legislazione riguardante l’ingegnerizzazione e le ispezioni nell’industria mineraria sono riuscite a diminuire del 27.7% l’esposizione a rumore nelle miniere sotterranee di carbone (60). • L’uso di dispositivi di otoprotezione adeguati rappresenta una misura efficace, specialmente se associata ad una formazione adeguata al loro utilizzo (60, 87, 88). • Ad oggi, abbiamo dati limitati sull’efficacia di programmi per la promozione dell’ascolto sicuro tra i giovani; nonostante ciò, quei pochi dati in nostro possesso sottolineano l’importanza della promozione della salute per cambiare le abitudini di ascolto, e il ruolo della tecnologia nel rendere possibile tale cambiamento. CASE STUDY Le campagne di sensibilizzazione e i provvedimenti politici riescono a prevenire i danni all’udito sia durante il lavoro che durante il tempo libero 1. Un’analisi sull’efficacia di un programma militare per la tutela dell’udito negli USA ha dimostrato che questi programmi erano efficaci (i lavoratori avevano il 28% di probabilità in meno di diventare sordi) e anche economicamente praticabili. Il programma ha registrato un rapporto costo-efficacia incrementale di 10 657 dollari per caso di sordità evitato, se confrontato con l’assenza di interventi. Questo numero si abbassa notevolmente se confrontato con i costi medi d’indennizzo di 64 172 dollari per sordità occupazionale indotta da rumore per individuo (89). 2. Le campagne di prevenzione possono riuscire a cambiare i comportamenti adolescenziali rispetto al rumore, portando a una visione più positiva dei dispositivi di otoprotezione e a un’aumentata voglia di utilizzarli nella popolazione liceale. Il governo fiammingo ha portato avanti una campagna tra gli studenti liceali, focalizzandosi sugli effetti dannosi del rumore ricreativo e sull’utilizzo preventivo dell’otoprotezione. I comportamenti degli studenti sono stati valutati prima e dopo la campagna, basandosi sul modello della teoria della condotta pianificata. I risultati sono stati molto promettenti, con un aumento dell’utilizzo di dispositivi di otoprotezione dal 3.6% prima della campagna al 14.3% (90). WORLD REPORT ON HEARING80 PREVENZIONE DELL’OTOTOSSICITÀ Come indicato nel Capitolo 1, alcuni farmaci di comune utilizzo possono danneggiare seriamente le vie uditive e portare a sordità permanente. La prevenzione di tale sordità da ototossicità è resa possibile da un utilizzo giudizioso di questi farmaci e un regolare monitoraggio audiologico durante il loro uso, quando necessario. La sordità da ototossicità può anche derivare dall’esposizione a sostanze chimiche di frequente riscontro in industrie come quella della stampa, edilizia e manifatturiera (vedi Cap.1). Prendere le dovute precauzioni in caso di utilizzo, insieme alla sorveglianza audiologica, può mitigare i rischi per l’udito di coloro che ne sono esposti. • Esposizione a sostanze chimiche sul luogo di lavoro È possibile prevenire gli effetti avversi dell’esposizione sui luoghi di lavoro con dei passi concreti, quali (91,92): – l’identificazione iniziale dei materiali pericolosi; – il controllo dell’esposizione attraverso la sostituzione, ove possibile (se non dovesse essere possibile, utilizzare ingegnerizzazione e provvedimenti amministrativi per minimizzare l’esposizione); – l’uso di dispositivi di protezione personale, come guanti e grembiuli protettivi contro il rischio chimico per ridurre l’esposizione cutanea; – l’identificazione attraverso etichette indicanti sostanze chimiche la cui ototossicità è riconosciuta, mostrando chiaramente i segnali di pericolosità; – sorveglianza audiologica (ulteriori informazioni sulla sorveglianza audiologica relativa ai danni da rumore vengono fornite nel paragrafo 2.2.4.) • Utilizzo appropriato dei farmaci ototossici I rischi causati dall’uso sregolato di farmaci ototossici vengono spiegati nel dettaglio nel Capitolo 1. Mentre, in molti casi, l’uso di questi farmaci potrebbe essere necessario e salva-vita, il loro uso giudizioso e regolamentato è essenziale per assicurarsi che i pazienti non li ricevano immotivatamente. Ogni qualvolta questo sia possibile, opzioni di terapia non ototossiche, sicure ed efficaci, dovrebbero essere ricercate e preferite rispetto a quelle capaci potenzialmente di avere un impatto negativo duraturo sull’udito (93). Gli ultimi sviluppi nella gestione della tubercolosi resistente a farmaci rappresentano un valido esempio di come tale obiettivo possa essere raggiunto. Le linee guida OMS sulla tubercolosi farmaco-resistente raccomandano l’uso di farmaci non iniettabili come la Bedachilina (94) nel trattamento della tubercolosi, per proteggere dal rischio elevato di ipoacusia associato con i farmaci iniettabili che venivano tradizionalmente usati (95). Laddove i farmaci ototossici siano essenziali, in particolare nella terapia del cancro, della tubercolosi, della malaria e altre patologie, il monitoraggio audiologico gioca un ruolo essenziale nell’ottimizzazione degli obiettivi relativi all’udito (93). CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 81 • Monitoraggio dell’ototossicità L’ototossicità viene rilevata in un individuo attraverso l’audiometria effettuata a cadenza regolare al fine di monitorizzare la risposta acustica e le soglie uditive, e al fine di determinare eventuali cambiamenti nella funzionalità uditiva oppure danni nel corso della terapia. Il monitoraggio dell’ototossicità aiuta a: – confrontare le prove audiologiche durante il corso del trattamento farmacologico; – identificare precocemente i cambiamenti audiologici; – identificare la necessità di variazioni terapeutiche; – prevenire l’ipoacusia debilitante a eziopatogenesi ototossica grazie ai cambiamenti terapeutici; – effettuare una riabilitazione audiologica per minimizzare l’impatto negativo dell’ototossicità (93). EFFICACIA DELLE MISURE PREVENTIVE DELL’OTOTOSSICITÀ • Il monitoraggio audiologico effettuato durante l’uso di farmaci ototossici, come quelli utilizzati per il trattamento della tubercolosi multiresistente, può aiutare a riconoscere i segni precoci dell’ipoacusia. Può inoltre fornire indicazioni e opportunità tempestive per passare a una terapia alternativa come mezzo di preservazione della capacità audiologica individuale (93, 96). • L’adozione e l’implementazione di questi protocolli da parte di professionisti e governi, non può essere vista come un’opzione; dato che queste rivestono un’importanza particolare nel migliorare gli outcome dei pazienti e la qualità della vita, dovrebbero costituire il minimo standard di cura nella gestione dell’ototossicità (97, 98). CASE STUDY Il Sudafrica prende provvedimenti per affrontare perdita dell’udito ototossica* La tubercolosi multiresistente ai farmaci (MDR-TB) è spesso trattata con agenti iniettabili che possono causare una perdita permanente dell’udito ototossico. Uno studio condotto in Sudafrica ha mostrato che entro 3 mesi dalla terapia con aminoglicosidi in ospedale, il 57% dei pazienti ha sviluppato una perdita dell’udito ad alta frequenza. Questo è stato motivo di allarme, dato che il Sudafrica è tra i paesi con il più alto carico di tubercolosi e HIV. L’amikacina e la streptomicina devono essere considerate solo se è possibile garantire un monitoraggio audiometrico di alta qualità (94). Una persona si sottopone a test dell’udito per rilevare la perdita di udito ad alta frequenza © R at na A ng gr ae ni , I nd on es ia WORLD REPORT ON HEARING82 Per affrontare questo problema di salute pubblica, il National Tuberculosis Control Program (NTP) del Sudafrica ha implementato il National Ototoxicity Prevention Program per migliorare l’accesso al monitoraggio audiologico, con l’obiettivo di ridurre l’incidenza della perdita dell’udito ototossica. Questi gli obiettivi del programma: conservare l’udito dei pazienti con DR-TB trattati con iniettabili; garantire la disponibilità di servizi audiometrici portatili; garantire cure riabilitative attraverso percorsi di cura appropriati, per coloro che hanno sviluppato perdita di udito. L’implementazione è stata effettuata in cinque fasi: (i) esplorazione - conduzione di un’analisi situazionale dei casi di DR-TB e selezione dei dispositivi audiometrici; (ii) definizione del programma - sviluppo di un protocollo di monitoraggio dell’ototossicità basato sulle evidenze; (iii) esecuzione: creazione di una rete di audiologia per sostenere il programma e garantirne il finanziamento; (iv) stabilire e rafforzare il percorso di cura del paziente di riferimento; (v) attuazione: come parte dell’implementazione, il Programma NTP ha acquistato e distribuito 183 audiometri automatici portatili, per fornire uno screening audiometrico per il monitoraggio della perdita dell’udito ototossica. È stato fornito supporto formativo per rafforzare e supportare lo screening e l’identificazione precoce della perdita dell’udito nei pazienti trattati con aminoglicosidi. Gli audiometri sono stati distribuiti a livello nazionale a strutture sanitarie selezionate, che includono ospedali distrettuali gestiti dal governo, ospedali per la tubercolosi, centri sanitari comunitari e strutture sanitarie primarie. Le valutazioni dell’udito di base sono state effettuate all’inizio della terapia e poi a intervalli regolari durante e dopo la fase iniettabile del trattamento della DR-TB tra tutti i pazienti con DR-TB. In un contesto a risorse limitate come il Sudafrica, l’esito di questo intervento ha portato a ridurre i tempi di attesa dei pazienti per lo screening e il collegamento ai servizi audiologici riabilitativi. Tra il 2014 e il 2019, sono stati eseguiti 33.490 test dell’udito su pazienti con DR-TB in tutto il Sudafrica, tra i quali il 56% è stato identificato come ad alto rischio di perdita permanente dell’udito. Tutti i pazienti sono stati monitorati mensilmente e hanno ricevuto servizi di riabilitazione. Il programma ha permesso al Sudafrica di quantificare il numero di pazienti a rischio di perdita dell’udito a causa della somministrazione di aminoglicosidi. Questa evidenza ha contribuito all’introduzione, nel giugno 2018, di un regime MDR-TB senza iniezioni. Inoltre, nel notare la diminuzione della necessità di screening dell’udito tra i pazienti con DR-TB, gli audiometri sono stati riassegnati, in particolare a livello di assistenza sanitaria primaria. Questa transizione è servita a rafforzare l’accesso universale allo screening dell’udito in tutto il paese. Il programma ha fornito molte eccellenti lezioni, basate sui sistemi sanitari che potrebbero essere sfruttate per mitigare l’ototossicità nelle cure oncologiche e richiede una urgente considerazione (99). * Fonte: un rapporto (non pubblicato) presentato all’OMS dal governo del Sudafrica. CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 83 È possibile identificare la perdita dell’udito a tutte le età e in tutti i contesti. 2.3 IDENTIFICAZIONE ANTICIPATA DELLA PERDITA UDITIVA L’identifi cazione precoce è il primo passo per aff rontare la perdita di udito. Poiché la perdita è praticamente invisibile, spesso non viene rilevata. Nei casi di neonati e anziani, ciò può avere conseguenze negative sugli esiti della riabilitazione e sulla cognizione. Per questo motivo, è importante stabilire misure speciali per lo screening uditivo, nelle diverse fasi della vita, mirando alle persone con maggiori probabilità di rischio. Come si vede nella Figura 2.3, quelli mirati includono: • neonati e lattanti; • bambini, soprattutto in ambito prescolare e scolastico; • adulti, soprattutto anziani; • tutti coloro che sono a maggior rischio di perdita dell’udito nel corso della vita, a causa dell’esposizione a rumore, a sostanze chimiche ototossiche e a medicinali ototossici. Figura 2.3 Identifi cazione della perdita uditiva nel corso della vitaFigure 2.3 Identifying hearing loss across the life course NEONATO: Screening udito del neonato BAMBINI: Controllo ad orecchio e udito in età scolare e pre-scolare ADULTI: Controllo dell’udito in occupazioni a rischio ANZIANI: Controllo dell’udito regolare DURANTE IL CORSO DELLA VITA: Screening per la perdita dell’udito 7eࢌ sintomatico WORLD REPORT ON HEARING84 Lo sviluppo tecnologico e la ricerca hanno consentito di effettuare tale screening, come spiegato qui di seguito. 2.3.1 IDENTIFICAZIONE NEI NEONATI Dato l’importante ruolo dell’udito nello sviluppo e nell’apprendimento di un bambino, è essenziale affrontare la perdita il prima possibile (100, 101). L’identificazione precoce nei neonati è resa possibile dallo screening. L’IMPORTANZA DEI PROTOCOLLI DI SCREENING NEI NEONATI Lo screening dell’udito nei neonati, se seguito da interventi tempestivi e appropriati, è efficace nell’assicurare che i nati con una significativa perdita permanente dell’udito non subiscano gli impatti negativi ad essa associati (102-108). Lo screening segue generalmente uno di questi due approcci: (i) screening universale, che copre tutti i neonati; (ii) screening “a rischio”, che si rivolge all’8-10% dei neonati a rischio di perdita permanente dell’udito (109); quando nessuna delle due strategie è praticabile, lo screening può anche essere “opportunistico” (ad esempio quando un genitore sospetta una perdita dell’udito e sottopone il proprio figlio allo screening). Lo screening “a rischio” include tipicamente i bambini che hanno un fattore di rischio di perdita uditiva identificabile. Tuttavia, poiché solo il 50-60% circa dei bambini con ipoacusia permanente mostra indicatori di rischio (109), una percentuale inaccettabilmente elevata può essere persa attraverso questa strategia selettiva; pertanto, ove possibile, si preferisce un approccio universale (110-112) (cfr. riquadro 2.5). Box 2.5 L’obiettivo è lo screening universale Uno studio sui risultati a lungo termine dei bambini a cui è stata diagnosticata una perdita permanente, ha messo a confronto tre programmi di screening: un programma universale; un programma “a rischio” e un programma “opportunistico”. I risultati hanno dimostrato i chiari vantaggi di un programma universale, in termini di età della diagnosi, linguaggio ricettivo ed espressivo e vocabolario ricettivo (nei bambini senza disabilità intellettiva), rispetto agli altri due tipi di screening (113). Tuttavia, in ambienti privi di programmi di screening e dove mancano le risorse, lo screening opportunistico potrebbe costituire un primo passo verso l’implementazione di altri programmi più efficaci. DISPONIBILITÀ DI STRUMENTI PER L’IDENTIFICAZIONE PRECOCE (114, 115) Lo screening uditivo diffuso tra i neonati è reso possibile dallo sviluppo di dispositivi automatizzati portatili e oggettivi. Lo screening universale utilizza le emissioni otoacustiche evocate da transienti (TEOAEs) e deve essere accompagnato da un CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 85 adeguato follow-up e da interventi mirati, poiché i vantaggi della diagnosi precoce sono associati all’intervento precoce piuttosto che allo screening di per sé, alla funzione delle cellule ciliate esterne o al test di risposta automatica del cervello uditivo (AABR), che valuta l’integrità del percorso neurale uditivo al tronco cerebrale uditivo (114). Tale screening può essere effettuato già dal giorno della nascita. Una diagnosi accurata può essere stabilita anche entro il primo mese di vita eseguendo il test Auditory Brainstem Response (ABR) o il test Auditory Stead State Response (ASSR) (116, 117) come raccomandato dalla Commissione congiunta sullo screening dell’udito infantile (118). Anche se lo screening di per sé è una parte importante all’interno di un programma di intervento precoce, deve essere sempre accompagnato da un adeguato follow-up e dalla riabilitazione (119, 120). Numerose evidenze dimostrano che i bambini beneficiano in modo significativo quando lo screening uditivo neonatale è associato a programmi di intervento precoce - spesso indicati come programmi di diagnosi e intervento precoce dell’udito (EHDI) - e che l’efficacia aumenta quanto prima il bambino (e la famiglia) viene individuato e inizia la riabilitazione (102-108, 121). Un esempio di ciò che prevede un programma EHDI di alta qualità è riportato nel Box 2.6. Box 2.6 Individuazione precoce dell’udito e intervento I programmi di rilevamento dell’udito e intervento precoce (EHDI) di alta qualità includono: (122, 123) • screening universale dell’udito neonatale; • sorveglianza continua per i neonati “a rischio” di perdita dell’udito, ma che hanno superato il programma di screening alla nascita; • valutazione diagnostica completa per confermare e quantificare l’entità e il tipo della perdita uditiva; • partecipazione dei genitori e coinvolgimento della famiglia; • supporto sociale, psicologico e informativo per le famiglie di bambini con diagnosi di ipoacusia permanente; • invio medico per indagini eziologiche e gestione come indicato; • tecnologie acustiche assistive inclusi apparecchi acustici, impianti cocleari, sistemi FM; consulenza aggiuntiva, informazione e formazione per supportare le tecnologie; • opzioni di sviluppo della comunicazione, compresa la terapia uditivo-verbale, lo sviluppo del linguaggio dei segni e altri interventi correlati. Lo screening dell’udito deve essere abbinato ad approfonditi follow-up e controlli come i vantaggi di prevenzione precoce devono essere associati a primi interventi piuttosto che a screening fai da te. WORLD REPORT ON HEARING86 EFFICACIA DEI PROGRAMMI DI SCREENING DELL’UDITO DEL NEONATO Se seguito da una pronta e adeguata riabilitazione, lo screening neonatale porta vantaggi significativi in termini di riduzione dell’età della diagnosi e dell’intervento, nonché un miglioramento del linguaggio e dello sviluppo cognitivo (100, 124-127). Questi vantaggi si traducono in migliori risultati sociali ed educativi per i bambini che ricevono cure tempestive e adeguate. Il rapporto costo-efficacia dello screening uditivo neonatale è dimostrato da studi condotti in paesi ad alto reddito come Australia, Paesi Bassi, Regno Unito e Stati Uniti, nonché in paesi a reddito medio come Cina, India, Nigeria e Filippine (128). In Cina, ad esempio, è stato riportato un rapporto costi/benefici a lungo termine di 1:7,52 (129) e in India, un’analisi dei costi ha rivelato risparmi nel corso della vita (compresi i costi sociali) di oltre 500.000 dollari internazionali per caso identificato (130). RAPPORTO QUALITÀPREZZO! L’OMS ha stimato il ritorno sull’investimento dallo screening dell’udito neonatale in un ambiente a reddito medio-basso e alto. I risultati, basati sui costi effettivi, hanno stimato che in un contesto a reddito medio-basso (preso come esempio) ci sarebbe un possibile ritorno di 1,67 dollari internazionali per ogni dollaro investito nello screening dell’udito neonatale. In un paese ad alto reddito, questo rendimento è stato stimato in 6,53 dollari internazionali per ogni dollaro investito. Inoltre, il valore dei DALY (Anni di vita vissuti in condizione disabilità) evitati in ciascun individuo sarebbe di 21 266 dollari internazionali e il beneficio monetario netto di 1,21 dollari. Nel caso di un ambiente ad alto reddito, il valore dei DALY evitati sarebbe di 523 251 dollari internazionali. Uno studio condotto negli Stati Uniti (110) ha previsto che entro 10 anni i costi risparmiati per l’”istruzione speciale” potrebbero compensare il costo dello Screening uditivo neonatale universale (UNHS) (131). In Germania nel 2006, è stato calcolato che l’UNHS risparmia circa 4.500 euro l’anno per ogni bambino con problemi di udito (125). Nelle Filippine, l’attuazione dello screening dal 2009 ha comportato notevoli risparmi a lungo termine (132, 133). CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 87 CASE STUDY In Israele l’attuazione di un programma nazionale di screening dell’udito neonatale porta benefici ai bambini con perdita dell’udito Nel 2010 il programma israeliano di screening dell’udito neonatale (NHSP) è stato implementato a livello nazionale, con l’obiettivo di garantire che tutti i bambini fossero sottoposti a screening per la ipoacusia entro il compimento del primo mese di età; quelli con perdita dell’udito sono stati diagnosticati non oltre i 3 mesi di età, con una riabilitazione iniziata quando il bambino aveva raggiunto i 6 mesi. Nel 2019, uno studio ha valutato l’efficacia di questo programma e ha scoperto che entro 3 anni dall’inizio, il programma aveva un’elevata copertura, con il 98,7% dei 179.000 bambini nati ogni anno tra il 2014 e il 2016 sottoposti a screening. Di conseguenza, l’età media della diagnosi di deficit uditivo si è ridotta da 9,5 a 3,7 mesi. I bambini con perdita dell’udito hanno iniziato a ricevere l’intervento a un’età media di 9,4 mesi (rispetto ai 19 mesi prima dell’implementazione dell’NHSP). Nel 2019 è stato valutato che come risultato di questo programma, i bambini hanno ricevuto un impianto cocleare all’età relativamente precoce di 1,75 anni, migliorando così i loro risultati riabilitativi (134). 2.3.2 IDENTIFICAZIONE NEI BAMBINI IN ETÀ PRESCOLARE E NEGLI AMBIENTI SCOLASTICI Sebbene lo screening neonatale abbia migliorato la capacità di identificare e affrontare l’ipoacusia congenita, i bambini che hanno subito un’ipoacusia minima alla nascita e quelli la cui ipoacusia è progressiva o si sviluppa più tardi nell’infanzia (ad es. a causa di una malattia dell’orecchio medio), spesso rimangono non identificati e senza cura. L’identificazione precoce di queste condizioni, in particolare le malattie dell’orecchio nei bambini e il loro collegamento alle cure, è fondamentale per fornire un’efficace assistenza acustica. GLI SCREENING COME PARTE DELLE INIZIATIVE DELLA SALUTE SCOLASTICA Dato che in tutto il mondo la stragrande maggioranza dei bambini va a scuola (135), lo screening scolastico rappresenta un’opportunità unica per condurre un test uditivo universale. I programmi di screening nelle scuole possono essere uno strumento utile per mitigare l’effetto della perdita dell’udito e delle malattie dell’orecchio non trattate (136), e per educare i bambini alle pratiche che aiutano a mantenere il percorso uditivo (come parte della salute generale), come l’ascolto sicuro (vedere la sezione 2.2.4). WORLD REPORT ON HEARING88 Esperienze positive sui programmi sanitari scolastici sono state riportate da numerose agenzie internazionali come l’OMS, l’UNICEF, l’UNESCO e la Banca Mondiale (137) che, insieme, hanno sviluppato una partnership: Focusing Resources on Effective School Health (FRESH). Data l’importanza dell’udito nell’istruzione, la frequenza dei problemi uditivi nei bambini in età scolare e la necessità di inculcare comportamenti di ascolto sicuri in tenera età, risulta essenziale la cura dell’udito nelle iniziative sanitarie della scuola. OPZIONI E STRUMENTI BASATI SULLA TECNOLOGIA PER SCREENING E COLLAUDO Sono disponibili diversi strumenti per facilitare lo screening dell’udito negli ambienti scolastici. La valutazione audiometrica si è dimostrata accurata nella valutazione dell’udito nei bambini in età scolare (138). Tuttavia, l’applicazione di tale screening è spesso limitata a contesti con scarse risorse o ad aree remote a causa di diversi fattori, tra cui l’alto costo delle apparecchiature, requisiti per la formazione intensiva degli screener sui principi audiometrici, rinvii eccessivi, mancanza di monitoraggio del rumore ambientale e scarsa acquisizione e gestione dei dati (139, 140). Recentemente sono emerse altre opzioni basate sulla tecnologia che hanno facilitato la conduzione dello screening dell’udito negli ambienti scolastici. Questi includono strumenti come: • applicazioni software per dispositivi mobili • screening dell’udito automatizzato • audiometria senza cabina • telemedicina. Queste opzioni sono descritte più dettagliatamente nella sezione 2.4.4. Oltre alla valutazione dell’udito, altri test comunemente usati in un servizio di screening dell’udito e dell’orecchio della scuola includono: i. Esame otoscopico: Questo esame identifica problemi comuni dell’orecchio esterno o medio. Oltre all’esame otoscopico tradizionale, sono disponibili altre soluzioni basate sulla tecnologia, come le app di otoscopia sugli smartphone (141, 142). L’esame otoscopico può anche essere supportato da opzioni di telemedicina (142, 143). ii. Timpanometria: Valuta la funzione dell’orecchio medio e diagnostica l’otite media non suppurativa (138). iii. Test delle emissioni otoacustiche (OAE): Questo test è rilevante soprattutto in situazioni in cui i bambini non sono in grado di seguire istruzioni, ad es. nei bambini in età prescolare o con bisogni speciali (144). EFFICACIA DEI PROGRAMMI DI SCREENING SCOLASTICI Per garantire l’efficacia dei programmi di screening nelle scuole è importante che vi sia un sistema di riferimento e che i bambini che necessitano di ulteriori indagini abbiano accesso ai servizi (136, 145). È essenziale delineare il percorso di cura e i meccanismi CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 89 Un bambino in Sudafrica si sottopone a un test dell’udito utilizzando l’audiometria automatizzata e le cuࢇ e a cancellazione del rumore. © H ea r t he W or ld F ou nd at io n di follow-up al momento della pianificazione dell’intervento, in modo che si possano ottenere tutti i benefi ci. • I bambini con perdita uditiva progressiva possono superare lo screening uditivo neonatale, ma in seguito essere identifi cati come ipoacusici attraverso controlli dell’orecchio e dell’udito in età prescolare o scolastica (132, 135). Lo screening sistematico nei bambini, seguito da cure adeguate, può portare a una tempestiva identifi cazione e alla successiva riparazione delle comuni malattie dell’orecchio. Tali programmi sono particolarmente utili laddove la prevalenza di malattie comuni dell’orecchio e perdita uditiva siano più elevate. • I programmi di screening dell’udito nelle scuole rappresentano un’opportunità per ridurre l’onere sanitario ed economico della ipoacusia infantile. Tuttavia, ad oggi, le analisi economiche eseguite su questo argomento sono poche e hanno conclusioni contrastanti. Sebbene, nel complesso, gli studi abbiano riscontrato che lo screening scolastico è effi cace in termini di costi, esiste una sostanziale incertezza a causa delle diff erenze metodologiche. Inoltre, la validità dei dati disponibili è limitata (147-151). Un efficace programma di salute nella scuola può essere uno degli investimenti più efficaci in termini di costi che una nazione può fare per migliorare contemporaneamente l’istruzione e la salute. L’OMS promuove i programmi di salute scolastica come un mezzo strategico per prevenire importanti rischi per la salute tra i giovani e coinvolgere il settore dell’istruzione negli sforzi per cambiare le condizioni educative, sociali, economiche e politiche che influenzano il rischio (146). WORLD REPORT ON HEARING90 Urgono inoltre ulteriori ricerche in questo settore, per creare standard di valutazione dei costi e per sviluppare stime generalizzabili e specifiche per ciascuna regione, che possano essere tradotte nei paesi che stanno valutando l’implementazione dello screening scolastico. CASE STUDY L’implementazione dello screening dell’udito nelle scuole in Polonia ha aiutato a identificare i bambini con perdita dell’udito (152) Tra marzo e giugno 2008, è stato attuato un programma di screening dell’udito nelle scuole delle aree rurali e delle piccole città della Polonia orientale, raggiungendo più di 92.000 bambini di età compresa tra i 7 e i 12 anni. Nel 2010 il programma è stato ulteriormente implementato nella parte occidentale del Paese, nell’ambito dell’“Esame degli organi di senso”, che includeva visite di controllo per orecchie, udito e occhi. Più di 71.000 alunni di prima elementare sono stati esaminati in 4.041 scuole: al 14% di loro è stata diagnosticata una perdita uditiva e dunque sono stati rimandati ad ulteriori cure e trattamenti. Particolarmente preoccupante è stato il fatto che oltre il 58% dei genitori dei bambini identificati con perdita di udito, non si era reso conto dell’esistenza del problema; il 27% dei bambini non aveva mai effettuato un controllo dell’udito, se non da neonato (programma di screening dell’udito neonatale) e il 41% non aveva ricevuto alcuna assistenza specialistica per affrontare il problema. Senza lo screening, è probabile che la maggior parte delle persone con perdita dell’udito sarebbe rimasta non identificata. 2.3.3 IDENTIFICAZIONE NEGLI ADULTI PIÚ ANZIANI Date le tendenze demografiche globali (153), è probabile che la necessità di cure dell’udito tra la popolazione adulta continui ad aumentare nei prossimi decenni (154). Le stime del Global Burden of Disease suggeriscono che oltre il 65% della popolazione globale di età superiore ai 60 anni soffra di un qualche grado di perdita uditiva. Nonostante le limitazioni funzionali associate alla perdita dell’udito (155), gli adulti in genere aspettano da nove a dieci anni prima di cercare cure adeguate (156, 157). Per colmare questa lacuna, è essenziale fornire servizi di screening attivi per gli anziani in modo facile e accessibile, seguiti da interventi adeguati. Tale screening può essere effettuato da operatori sanitari, come medici generici, medici di base o da operatori sanitari (156, 158). Per questo, le linee guida dell’OMS per l’assistenza integrata agli anziani raccomandano di garantire uno screening, seguito poi dalla fornitura di apparecchi acustici (vedi Box 2.7). I programmi di screening nelle scuole devono essere collegati con i servizi per l’orecchio e l’udito, in modo che i bambini abbiano accesso alle cure necessarie e si possa intraprendere il follow-up per assicurarsi che lo facciano. CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 91 Box 2.7 Raccomandazione 4 delle linee guida dell’OMS per l’assistenza integrata agli anziani (155) La Raccomandazione 4 afferma che lo screening, seguito dalla fornitura di apparecchi acustici, dovrebbe essere garantito alle persone anziane per l’identificazione tempestiva e la gestione della perdita dell’udito. Considerazioni importanti per l’implementazione: 1. si dovrebbe promuovere la consapevolezza della comunità sulla perdita di udito, insieme ai benefici positivi della riabilitazione audiologica nelle persone anziane, attraverso la ricerca di casi comunitari e di attività di sensibilizzazione; 2. gli operatori sanitari dovrebbero essere incoraggiati a sottoporre gli anziani agli screening, interrogandoli periodicamente sulla condizione del loro udito. Si raccomandano anche l’esame audiologico, l’esame otoscopico e il test della voce sussurrata; 3. gli apparecchi acustici sono il trattamento di scelta per le persone anziane con ipoacusia, perché riducono al minimo la perdita uditiva e migliorano le funzioni quotidiane; 4. i farmaci dovrebbero essere rivisti per la loro potenziale ototossicità; 5. le persone con otite media cronica o perdita improvvisa dell’udito, o che non superano i test di screening, devono essere indirizzate a un otorinolaringoiatra. EFFICACIA DELLO SCREENING DELL’UDITO NEGLI ANZIANI • Negli anziani, lo screening dell’udito, seguito dalla pronta fornitura di apparecchi acustici, è associato a miglioramenti significativi della capacità uditiva (155, 159, 160). • Per gli anziani, lo screening e l’intervento precoce diventano ancora più rilevanti dati i legami tra perdita di udito e demenza senile (161) e affrontare l’ipoacusia con l’utilizzo di questi dispositivi, può avere un’influenza positiva sulla capacità cognitiva. • I programmi di conservazione dell’udito attuati per ridurre l’ipoacusia provocata dal rumore nelle fabbriche o negli ambienti militari, si sono dimostrati efficaci in termini di costi (89, 162). Sebbene il rapporto costo-efficacia dello screening uditivo negli anziani non sia stato ancora studiato in modo approfondito, la letteratura disponibile descrive un miglioramento della qualità della loro vita, nonché vantaggi economici per tutta la società (156, 163, 164). RAPPORTO QUALITÀPREZZO! L’OMS ha effettuato una stima conservativa sul ritorno di investimento derivante dallo screening uditivo negli adulti di età superiore ai 50 anni. I risultati basati sui costi effettivi stimano un possibile ritorno di 1,62 dollari internazionali per ogni dollaro investito per WORLD REPORT ON HEARING92 anziani che vivono in un ambiente ad alto reddito, e di 0,28 dollari internazionali in un ambiente a reddito medio. Inoltre, il valore della vita dei DALY evitati per 10.000 individui sottoposti a screening sarebbe di 8 877 785 dollari internazionali. Nel caso di un ambiente ad alto reddito, il valore dei DALY evitati sarebbe di 788 604 dollari. Ulteriori dettagli sono forniti nell’ALLEGATO WEB B. CASE STUDY Lo screening dell’udito negli anziani è una strategia conveniente Un modello economico ha valutato le implicazioni finanziarie e i guadagni di uno screening dell’udito per anziani, seguito dalla fornitura di servizi per l’udito, basata su segnalazioni fatte dai medici di base (GP) del Regno Unito. I costi considerati includevano l’intero pacchetto di cure, con valutazione, adattamento dell’apparecchio acustico, dispositivo/i apparecchio acustico/i, follow-up e riparazione. Il costo totale dei servizi è aumentato in modo significativo da 21 milioni di sterline a 38 milioni di sterline per 100.000 abitanti. Si è inoltre dimostrato che si potrebbero ottenere fino a 30.000 QALY (anni di vita vissuti in qualità) per 100.000 persone, come risultato del programma di screening, con un giustificabile rapporto costo per QALY. Lo screening ha dimostrato di offrire maggiori guadagni a costi maggiori, rispetto al rinvio del medico di famiglia, con un favorevole rapporto costi-benefici valutato tra £ 1.000 e £ 2.000. Si è giunti così alla conclusione che lo screening per la perdita dell’udito bilaterale, dall’età di 55 anni in poi, offre il miglior guadagno potenziale per la salute pubblica ed è un mezzo conveniente per migliorare la partecipazione e la qualità della vita degli anziani (163). 2.3.4 IDENTIFICAZIONE DEI SOGGETTI A RISCHIO ELEVATO Gli individui e le popolazioni a maggior rischio di perdita dell’udito includono quelli: • esposti al rumore o/a sostanze chimiche ototossiche sul posto di lavoro; • che fanno utilizzo di medicinali ototossici. La sorveglianza mirata dell’udito è parte integrante dei programmi di tutela dell’udito in ambito lavorativo e in ambito di prevenzione dell’ototossicità, così come descritto in precedenza. Tale sorveglianza non solo fornisce un mezzo per la diagnosi precoce, ma funge anche da allarme tempestivo. Le misure preventive, infatti, se adottate immediatamente dopo l’identificazione, possono ridurre la progressione dell’ipoacusia nei soggetti esposti a sostanze ototossiche. Utilizzando gli strumenti e le strategie sopra descritte, è possibile una diagnosi precoce della perdita di udito, anche in contesti con risorse limitate. I programmi di screening rivolti a diversi gruppi a rischio, possono garantire che tutte le persone con perdita CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 93 uditiva abbiano la possibilità di essere identificate in tempo per beneficiare dei servizi di riabilitazione ed evitare gli effetti negativi della perdita dell’udito. Per questo motivo è fondamentale che tutti i servizi di screening siano supportati da un adeguato follow-up diagnostico e riabilitativo. 2.3.5 SOLUZIONI INNOVATIVE DI SCREENING NEL CORSO DELLA VITA Lo screening dell’udito può essere effettuato tramite l’audiometria convenzionale o tramite strumenti tecnologici (156, 165); lo screening è facilitato dallo sviluppo di applicazioni software su dispositivi mobili (142, 166, 167) che forniscono strumenti convenienti e facili da usare. La gamma degli strumenti comprende: TEST AUTOMATICI DELL’UDITO (142, 168–170) Riducono la necessità di formazione poiché la tecnologia utilizzata può essere programmata per fornire il segnale e analizzare la risposta individuale. TEST DIGITS-IN-NOISE(171–173) Si basano sul riconoscimento del parlato nel rumore e forniscono una misura funzionale in relazione alle capacità di riconoscimento del parlato, piuttosto che alle soglie medie di tono puro. È sia accurato che rapido e può essere analizzato online, tramite applicazioni mobili e in contesti comunitari (172, 174-177). Sulla base del test Digits in Noise sudafricano convalidato (“hearZa”) (177, 178), l’Organizzazione Mondiale della Sanità ha sviluppato e lanciato le applicazioni gratuite per smartphone “hearWHO” e “hearWHOpro” che possono essere utilizzate sia individualmente, che dagli operatori sanitari (Box 2.8). L’audiometria senza cabina rende accessibile la cura dell’udito © S ee m a Ru pa ni S ha h WORLD REPORT ON HEARING94 Box 2.8 Applicazioni per smartphone sviluppate dall’OMS • L’app listenWHO si basa su una tecnologia validata digits-in- noise. Offre al pubblico l’accesso a uno screening dell’udito gratuito e convalidato per controllare il proprio stato uditivo e monitorarlo nel tempo. La app è di facile utilizzo: mostra i risultati per ciascun utente e conserva un archivio personalizzato del proprio stato uditivo nel tempo. È disponibile in entrambi i formati Android e iOS. • La versione di listenWHOpro può essere utilizzata dagli operatori sanitari per sottoporre la popolazione a screening uditivi e indirizzarla a test diagnostici, qualora non venga superato lo screening. Altre soluzioni basate sulla tecnologia includono: AUDIOMETRY BOOTHLESS Si tratta di un esame che non prevede la necessità di una cabina audiometrica. Ad esempio, l’audiometria può essere eseguita attraverso l’uso di cuffie con cancellazione del rumore (140, 167, 168, 179), che forniscono un’efficace integrazione per i test audiologici in contesti comunitari, come le scuole. SERVIZI DI TELEMEDICINA (139, 143, 180) La telemedicina è la fornitura di servizi e informazioni relativi alla salute tramite tecnologie di telecomunicazione. La teleotologia e la teleaudiologia utilizzano la telemedicina per fornire servizi otologici e audiologici a distanza. I reperti audiologici e le immagini otoscopiche vengono trasmesse via internet, dal punto di contatto con l’individuo a un esperto che si trova in un luogo lontano. La diagnosi (e le opzioni di gestione obbligatorie) può quindi essere ritrasmessa all’individuo (181, 182). La telemedicina offre dunque una valida soluzione laddove ci siano evidenti difficoltà nei servizi sanitari o nella loro limitata disponibilità. La diagnosi precoce della perdita uditiva è possibile utilizzando gli strumenti e le strategie sopra descritti, anche in contesti con risorse limitate. I programmi di screening rivolti a diversi gruppi a rischio possono garantire che tutti gli individui con perdita di udito abbiano la possibilità di essere identificati in tempo per beneficiare dei servizi di riabilitazione ed evitare gli impatti negativi della perdita dell’udito. Per questo motivo è fondamentale che ogni servizio di screening sia supportato da un adeguato follow-up diagnostico e riabilitativo. CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 95 Affrontare la perdita uditiva richiede un approccio incentrato sulla persona, che parta da una panoramica olistica di ciascun profilo clinico, delle esigenze di comunicazione, delle preferenze, dell’ambiente e si adatti alle risorse disponibili. 2.4 CURA E RIABILITAZIONE Una volta che una persona viene identificata come un possibile soggetto a rischio perdita uditiva, allora potrà beneficiare di una serie di interventi clinici, riabilitativi e ambientali attualmente disponibili. La natura, il grado e la progressione della perdita uditiva, insieme a alle condizione di salute pregresse (ad es. otite media, otosclerosi, ecc.), determinano il quadro clinico di un individuo, sebbene le persone con lo stesso profilo clinico possano avere comunque esigenze di assistenza all’udito molto diverse tra loro (183). Questo perché l’impatto della perdita dell’udito dipende non solo dal profilo clinico, ma anche da fattori contestuali come i bisogni di comunicazione, i fattori ambientali e l’accesso alla riabilitazione (10, 184, 185). 2.4.1 APPROCCIO ALLA CURA DELL’ORECCHIO E DELL’UDITO INCENTRATO SULLA PERSONA E RIABILITAZIONE L’adozione di un approccio incentrato sulla persona è essenziale per determinare le esigenze di cura dell’udito e di riabilitazione di ciascun individuo. Come illustrato nella Figura 2.4, la cura dell’orecchio e dell’udito incentrata sulla persona implica una comprensione in termini di profilo clinico, esigenze e preferenze di comunicazione e di risorse disponibili. Due persone con lo stesso audiogramma possono avere difficoltà ed esperienze uditive molto diverse tra loro. WORLD REPORT ON HEARING96 Figura 2.4 Cura dell’orecchio e dell’udito incentrata sulla persona La perdita dell’udito che accompagna le malattie dell’orecchio, come ad esempio l’otite media o l’otosclerosi, può essere generalmente trattata con farmaci o con interventi chirurgici (come descritto in precedenza nella sezione 2.2). Tuttavia, la maggior parte delle perdite uditive è irreversibile e la riabilitazione è necessaria in tutte le fasi della vita. La riabilitazione è essenziale per migliorare le funzioni, l’attività, la partecipazione e, in definitiva, offrire una migliore qualità della vita alle persone con ipoacusia (186). La Figura 2.5 illustra i diversi approcci alla riabilitazione, tra cui: (i) tecnologia acustica sotto forma di apparecchi acustici, impianti cocleari e protesi impiantabili; (ii) linguaggio dei segni e altre sostituzioni sensoriali come Braille, Tadoma, stampa sul palmo e lettura vocale; (iii) terapia riabilitativa, come Total Communication e terapia dell’udito e del linguaggio. Figure 2.4 Person centered ear and hearing care RISORSE DISPONIBILI Quali risorse quali risorse sono disponibili dati lȆambiente, le infraࢌrutture per la salute e i servizi clinici disponibili PROFILO CLINICO - CHE COMPRENDE: Studio otologico Profilo audiologico grado; tipo; età di insorgenza Altre limitazioni funzionali come deficit visivi; sviluppo disabilit¢, per esempio autismo BISOGNI COMUNICATIVI - CHE COMPRENDONO: Diࢇcolt¢ di udito vissuta Esigenze di comunicazione PREFERENZE DI COMUNICAZIONE - COME : Orale/auricolare Visiva/tattile La riabilitazione mira a ottimizzare il funzionamento quotidiano di coloro che hanno una perdita uditiva per assicurare che la persona raggiunga la migliore qualità di vita a livello fisico, funzionale, sociale, emotivo e anche economico. CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 97 Figura 2.5 Approcci alla riabilitazione uditivaFigure 2.5 a hes to hearing rehabilitation Gli approcci alla riabilitazione includono: Apparecchi acustici Impianti cocleari Protesi impiantiabili Linguaggio dei segni Altri mezzi di comunicazione Comunicazione totale Logopedia TECNOLOGIA DELL’UDITO TERAPIA RIABILITATIVA LINGUAGGIO DEI SEGNI E SOSTITUZIONE SENSORIALE 2.4.2 TECNOLOGIA DELL’UDITO PER LA RIABILITAZIONE La tecnologia per migliorare o abilitare la percezione uditiva, costituisce una componente chiave nella riabilitazione dell’udito. L’uso di tale tecnologia offre agli utenti un maggiore accesso alle informazioni trasmesse attraverso il suono e il parlato (187). Sebbene la tecnologia sia una parte fondamentale della riabilitazione, è comunque essenziale notare che costituisce solo una parte dell’intera strategia riabilitativa. I diversi tipi di tecnologia acustica includono apparecchi acustici e impianti, come descritto di seguito. APPARECCHI ACUSTICI Gli apparecchi acustici (186, 188-191) rappresentano un’opzione efficace, non invasiva e a basso rischio frequentemente utilizzata per riabilitare la perdita uditiva (192). (I diversi tipi di apparecchio acustico sono descritti nel Box 2.9). La stragrande maggioranza delle persone con ipoacusia è rappresentata da adulti che presentano livelli da lievi a moderati, la cui perdita uditiva provoca numerose difficoltà nella vita di tutti i giorni. Questo livello di ipoacusia può essere ben affrontato attraverso l’uso di apparecchi acustici che migliorano la qualità della vita e la capacità di ascolto. Anche nei casi di persone con grave ipoacusia, con deficit cognitivi (193) e nei bambini (194, 195), l’uso di apparecchi acustici può migliorare la capacità di percepire input sensoriali e risultati funzionali che non sono semplicemente una amplificazione dell’udito, ma dipendono da altri interventi e fattori di supporto. WORLD REPORT ON HEARING98 Box 2.9 Apparecchi acustici Gli apparecchi acustici sono dispositivi che amplificano e trasmettono il suono all’orecchio al fine di migliorare la funzione uditiva. Possono essere analogici o digitali. Apparecchi acustici analogici: captano l’energia sonora, la trasformano in segnali elettrici che vengono poi amplificati e trasmessi attraverso il condotto uditivo al timpano. Apparecchi acustici digitali: svolgono la stessa funzione chiave degli apparecchi acustici analogici, ma possono essere programmati per adattarsi alle esigenze audiologiche individuali. Di solito consentono molte funzionalità aggiuntive e rappresentano generalmente l’opzione preferita. Nel determinare quale tipo di apparecchi acustici fornire, i paesi dovrebbero seguire le raccomandazioni delineate nel “Profilo per la tecnologia degli apparecchi acustici adatta ai paesi a basso e medio reddito dell’OMS” (196). IMPIANTI COCLEARI Gli impianti cocleari sono dispositivi elettronici, particolarmente utili quando un apparecchio acustico convenzionale ha pochi o nessun beneficio o non può essere utilizzato (192). Tipicamente, questi dispositivi bypassano le strutture dell’orecchio medio e interno per stimolare direttamente il nervo uditivo (197) e possono dare a una persona non udente un’utile rappresentazione dei suoni nell’ambiente, rendendo possibile la comprensione del parlato. Una descrizione di come funziona un impianto cocleare è fornita nel Box 2.10 e illustrata nella Figura 2.6. L’uso dell’impianto nei bambini con grave grado di ipoacusia ha portato benefici sostanziali ai soggetti impiantati e, se accompagnati da un’adeguata riabilitazione, portano a un miglioramento significativo dello stato audiologico, del funzionamento generale e delle capacità di percezione del linguaggio (198). I bambini con impianto cocleare hanno una maggiore probabilità di acquisire il linguaggio orale, integrarsi a scuola, sperimentare suoni, insieme a migliori capacità di parola (199, 200). Gli impianti cocleari possono anche avere un impatto benefico sull’apprendimento e sui risultati educativi, nonché sulla qualità complessiva della vita, sebbene molti fattori diversi dall’impianto influenzino questi risultati (201- 203). Negli ultimi anni, l’uso dell’impianto è stato esteso anche agli adulti con ipoacusia neurosensoriale da grave a profonda, che grazie all’uso dell’impianto mostrano una migliore percezione del linguaggio e una migliore qualità di vita (202, 204). Un’analisi economica sanitaria ha dimostrato l’incremento del rapporto costi- benefici di $ 5.759 per QALY (anno di vita in qualità) grazie all’uso degli apparecchi acustici (rispetto a chi invece non utilizza l’apparecchio). CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 99 CASE STUDY L’India adotta misure per migliorare l’accesso alle tecnologie per l’udito* Nel 2006, il governo indiano ha lanciato il Programma nazionale per la prevenzione e il controllo della sordità. Negli ultimi anni, in alcuni stati del paese, questo programma è stato ampliato per includere anche l’impianto cocleare. Il Ministero del benessere sociale dell’India, attraverso il suo programma per l’assistenza alle persone con disabilità, ha fornito finanziamenti per l’applicazione di 500 impianti cocleari ogni anno. Per questo, il governo ha messo a disposizione 172 centri, inclusi ospedali pubblici e privati, dove si possono eseguire interventi chirurgici di impianto cocleare, grazie al lavoro di oltre 300 professionisti che forniscono la riabilitazione post-operatoria. Nello stato meridionale del Tamil Nadu (che conta una popolazione di oltre 67 milioni di abitanti), il governo ha tenuto particolarmente conto dell’elevata prevalenza (0,6%) della sordità congenita, includendo l’impianto cocleare gratuito per i bambini fino all’età di sei anni e i cui genitori soddisfano alcuni criteri economici. Al fine di garantire il successo della riabilitazione degli impiantati, il governo ha creato un modello unico di fornitura di servizi “hub and spoke” con la creazione di centri di servizi satellitari nelle aree rurali meno servite. Il supporto in questi centri è fornito di persona, da una forza lavoro qualificata, nonché a distanza attraverso la telemedicina. Di conseguenza, i tassi di follow-up tra gli impiantati sono passati dal 50% al 90%. Questo approccio unico risponde a un’immensa necessità all’interno dello Stato indiano e fornisce un modello scalabile e adottobile sia in altri stati dell’India, che anche in altri paesi a basso e medio reddito. * Fonte: Sampath Kumar R, Kameswaran M. A sustainable model for cochlear implantation in the developing world: perspectives from the Indian subcontinent. Curr Opin Otolaryngol Head Neck Surg. 2018 Jun;26(3):196-9; and Government of India. Fifthy fifth report: Standing Committee on Social Justice And Empowerment (2017-2018). WORLD REPORT ON HEARING100 Sebbene gli impianti cocleari presentino un notevole potenziale in termini di disponibilità e opportunità, il loro uso è limitato per molte condizioni e individui (205-207). Inoltre sono assolutamente necessarie una terapia riabilitativa e diversi servizi di supporto che accompagnino l’impianto cocleare. L’impianto cocleare deve quindi essere utilizzato solo dopo un’approfondita valutazione clinica per garantire i potenziali benefici, e solo dove esiste un’infrastruttura di supporto per la terapia riabilitativa. Box 2.10 Impianto cocleare: come funziona (208) Un impianto cocleare è un dispositivo impiantato chirurgicamente che funziona trasducendo l’energia acustica in un segnale elettrico, che viene utilizzata per stimolare le fibre nervose uditive. L’impianto ha due componenti: 1. il sistema esterno che comprende: • un microfono per la rilevazione dei suoni; • un elaboratore vocale per trasformare l’informazione acustica in una sequenza di stimoli elettrici; • un trasmettitore esterno per la trasmissione dello stimolo attraverso la pelle al sistema impiantato. 2. Il sistema impiantato che comprende: • un ricevitore interno per elaborare gli stimoli ricevuti; • un cavo multifilare per collegare il ricevitore agli elettrodi; • un array di elettrodi che viene inserito nella coclea e stimola direttamente i neuroni nell’orecchio interno. La stimolazione diretta del nervo uditivo aggira le cellule ciliate cocleari danneggiate o assenti, rendendo l’impianto cocleare una forma di intervento adatta per gli individui con ipoacusia neurosensoriale da grave a profonda. L’impianto cocleare è una delle protesi neurali di maggior successo sviluppate fino ad oggi (208). CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 101 Figura 2.6 Impianto cocleare Ricevitore interno Serie di elettrodi Microfono e processore vocale Trasmettitore esterno2 1 3 4 CONDUZIONE OSSEA E IMPIANTI PER L’ORECCHIO MEDIO La conduzione ossea e gli impianti per l’orecchio medio rappresentano un’altra area crescente di progresso tecnologico nel campo della riabilitazione dell’udito (209-212). • Gli impianti a conduzione ossea trasmettono il suono all’orecchio interno attraverso le ossa del cranio, bypassando l’orecchio medio. • Gli impianti attivi per l’orecchio medio possono essere impiantati completamente o parzialmente nell’orecchio. Essi funzionano convertendo il suono in energia cinetica che fa vibrare direttamente gli ossicini dell’orecchio medio o trasmette le vibrazioni all’orecchio interno. Tutti gli individui con perdite uditive di tipo conduttivo, neurosensoriale o misto possono potenzialmente utilizzare questi apparecchi; non richiedono la chiusura del condotto uditivo esterno e quindi riducono molti dei problemi associati agli apparecchi acustici convenzionali (ad esempio, il tappo di cerume). Gli impianti sono anche effi caci per soggetti con malattie dell’orecchio medio e malformazioni dell’orecchio esterno. Qualunque sia la tecnologia utilizzata, sono necessarie misure complementari per garantire che dispositivi e impianti giovino ai loro utilizzatori. Come illustrato nella Figura 2.7, questo si ottiene attraverso un approccio alla cura incentrato sulla persona, che implica la fornitura di: (186, 187) WORLD REPORT ON HEARING102 • Istruzioni all’uso degli apparecchi acustici e degli accessori che aumentano la possibilità di un risultato positivo derivante dal loro uso. • Addestramento uditivo e cognitivo per aiutare le persone a utilizzare al meglio il proprio udito potenziato in tutte le situazioni. • Consulenza per aff rontare i problemi di partecipazione e qualità della vita che derivano da defi cit residui di funzione e attività. © S im on W an g an d Al an a L’assistenza incentrata sulla persona aiuta coloro che hanno perso l’udito a raggiungere il proprio pieno potenziale CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 103 Figura 2.7 Assistenza incentrata sulla persona per i portatori di apparecchi acustici: fattori da considerare Istruzioni per l’uso di apparecchi acustici e accessori. Questo aumenta la possibilità di un risultato positivo dal loro uso Training auditivi e cognitivi per aiutare le persone ad utilizzare meglio il loro potenziale in tutte le situazioni Consulenza per risolvere i problemi di partecipazione e qualità di vita che derivano dal residuo deficit di funzione e attività EFFICACIA DEGLI APPARECCHI ACUSTICI E DEGLI IMPIANTI • Nei bambini, un intervento tempestivo con apparecchi acustici e impianti porta a un miglioramento dell’udito, della comunicazione e della qualità di vita, che si traduce in migliori risultati educativi (202, 203, 213-215). L’uso di apparecchi acustici può anche proteggere dal declino cognitivo e dalla demenza (216). • Negli adulti, l’uso di apparecchi acustici e di impianti cocleari migliora le capacità di ascolto e la qualità di vita (186, 187, 190, 191, 193, 202, 214, 217). • L’uso di questi dispositivi ha dimostrato di essere conveniente in diversi contesti economici (202, 214, 215, 218-220). RAPPORTO QUALITÀPREZZO! L’OMS ha fatto una stima conservativa del ritorno sull’investimento in apparecchi acustici unilaterali e degli impianti cocleari nei bambini. In termini di apparecchi unilaterali, Qualunque sia il mezzo di amplificazione dell’udito, sono comunque necessarie misure complementari per garantire beneficio agli utenti. WORLD REPORT ON HEARING104 le stime basate sui costi effettivi in un ambiente ad alto reddito, hanno mostrato un possibile ritorno di 1,84 dollari internazionali per ogni dollaro investito, e un valore di DALY evitati di 60 183 dollari per ogni individuo. Nell’esempio di un ambiente a reddito medio-basso, il ritorno di investimento è stato di 1,62 con un valore di DALY evitato di 3.564 dollari. Con gli impianti cocleari unilaterali, le stime basate sui costi effettivi in un ambiente ad alto reddito hanno mostrato un ritorno di 2,59 dollari internazionali per ogni dollaro investito, e un valore di DALY evitato per tutta la vita di 38.153 dollari per ogni individuo. Invece ad esempio in un ambiente a reddito medio-basso, il ritorno di investimento è stato di 1,46 dollari internazionali, con un valore di DALY evitato di 6.907 dollari. Per un ambiente a reddito medio-alto, il rapporto dell’investimento è stato stimato in 4,09 dollari internazionali con un valore di DALY evitato di 24,161 dollari. Ulteriori dettagli sono forniti nell’ALLEGATO B del WEB. Nonostante l’efficacia e il costo dell’amplificazione dell’udito nella riabilitazione, molte difficoltà ne limitano l’uso e l’accessibilità. Le cause di questo mancato utilizzo sono delineate nella sezione 3. E questo accade nonostante gli sviluppi rivoluzionari, specialmente per l’ipoacusia in età adulta, forniscano miglioramenti nell’accesso alla tecnologia acustica ai servizi correlati all’udito. CASE STUDY I Gli apparecchi acustici migliorano la qualità della vita degli utenti Cinque studi di controllo randomizzati (RCT) condotti tra il 1987 e il 2017 negli Stati Uniti e in Europa, hanno concluso che l’uso di apparecchi acustici negli anziani ha portato a migliorare la salute e i risultati relativi all’udito. Coloro che utilizzano i dispositivi hanno riportato un miglioramento significativo nella capacità di ascolto, in particolare e nella qualità di vita, in generale. Oltre a riportare una migliore partecipazione alla vita comunitaria, alla sfera sociale, familiare e alle attività ricreative, gli utenti hanno indicato che le barriere al lavoro e alle opportunità di istruzione sono state ridotte rispetto al mancato utilizzo degli apparecchi acustici (189). CASE STUDY II In Colombia gli impianti cocleari sono convenienti (221) In Colombia, Penaranda et al. hanno valutato gli investimenti a vita di 68 bambini utilizzatori di impianti cocleari in giovane età. Prendendo in considerazione il costo dell’apparecchio e tutte le altre spese mediche (follow-up, logopedia, batterie, perdita di reddito dei genitori, viaggi) ogni bambino ha richiesto un investimento medio di 99.000 dollari nel corso della vita (supponendo una durata della vita di 78 anni per le donne e 72 anni per gli uomini). L’analisi ha anche valutato il ritorno CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 105 dell’investimento per trattare i bambini con impianti cocleari sulla base dei costi del trattamento e dei benefici dell’uso degli impianti cocleari rispetto agli apparecchi acustici. Lo studio ha concluso che per ogni dollaro investito nella riabilitazione di un bambino con impianto cocleare, c’era un ritorno di investimento di 2,07 dollari. CASE STUDY II L’età non è una barriera alla riabilitazione uditiva La perdita dell’udito può verificarsi in qualsiasi fase della vita e può essere affrontata attraverso interventi tempestivi. Mollie Smith di Rugby nel Regno Unito è diventata profondamente sorda ad entrambe le orecchie all’età di 70 anni e ha attribuito questa perdita uditiva all’esposizione al suono dei dirigibili da bambina, durante la Seconda Guerra Mondiale. In seguito alla perdita completa dell’udito, imparò a leggere le labbra, ma alla fine l’ulteriore perdita della vista la lasciò in grado di comunicare solo attraverso il tatto. Fu la perdita della vista che motivò Mollie a cercare un nuovo dispositivo di assistenza: all’età di 99 anni ha scoperto di poter ricorrere all’impianto cocleare. Attraverso l’uso dell’impianto, Mollie fu di nuovo in grado di comunicare con i suoi cari, migliorando così notevolmente la qualità della sua vita. Links correlati: https://katherinebouton.com/2017/02/22/how-old-is-too-old-for-a-cochlear-implant/ https://www.dailymail.co.uk/health/article-2604170/Deaf-great-grandmother-99-oldest-person-Europe-receive-cochlear- implant.html https://www.coventrytelegraph.net/news/health/99-year-old-mollie-becomes-oldest-europe-6983622 SVILUPPI RIVOLUZIONARI NELLA TECNOLOGIA DELL’UDITO Negli ultimi anni, i numerosi sviluppi della tecnologia acustica, e delle relative politiche, offrono il potenziale per espandere l’accesso ai dispositivi nelle popolazioni meno servite. Alcuni esempi: • Sviluppi della tecnologia i. Apparecchi acustici auto-installanti/adattati: Questi dispositivi hanno il vantaggio di essere accessibili e convenienti rispetto all’assistenza sanitaria per l’udito, in particolare nei paesi a basso e medio reddito (222-225), riducendo la necessità di un supporto audiologico e di attrezzature. Un apparecchio acustico autoinstallante, infatti, permette all’utente di eseguire sia la misurazione della soglia, che la regolazione fine, con l’aiuto di istruzioni dettagliate (222). Gli studi suggeriscono che l’auto-adattamento degli apparecchi acustici è possibile e ha maggiori probabilità di successo se i dispositivi e le interfacce sono chiari e ben progettati, e se il processo di adattamento è chiaramente delineato (222, 223, 225). Tuttavia, è necessaria una ricerca che si rivolga a diversi gruppi di popolazione e a diversi contesti educativi. WORLD REPORT ON HEARING106 ii. Nuove tecnologie dell’udito: Queste includono apparecchi acustici collegati a smartphone, applicazioni per smartphone, prodotti di amplificazione sonora personale (PSAP) e apparecchi acustici che forniscono agli utenti opzioni alternative per l’amplificazione (186, 226, 227) (Box 2.11). Anche se la crescente disponibilità di queste nuove tecnologie potrebbero essere il primo passo per persone in cerca di cure per l’udito (228), l’efficacia, i benefici e le limitazioni necessitano di un’attenta indagine (226, 227, 229, 230). iii. Batterie ricaricabili per apparecchi acustici (comprese le batterie a energia solare): Gli apparecchi acustici che usano batterie ricaricabili sono efficaci nel ridurre i costi associati all’uso delle pile. Le batterie ricaricabili al nichel-metallo idruro o agli ioni di litio, accoppiate con un dispositivo di ricarica solare, forniscono un’alternativa che può essere utile in tutte le situazioni, compresi gli ambienti in cui la fornitura elettrica è incerta (231-233). Le batterie ricaricabili e il caricatore, però, comportano costi iniziali aggiuntivi e devono essere accessibili perché questa soluzione abbia successo. È anche importante testare gli aparecchi con queste ricaricabili per assicurarsi che la qualità e le caratteristiche elettroacustiche rimangano inalterate (233). • Sviluppi nella fornitura di servizi i. Dispositivi diretti al consumatore: Molte delle tecnologie sopra menzionate stanno diventando accessibili direttamente al consumatore (DTC), compresi gli apparecchi acustici da banco (OTC). Gli studi suggeriscono che efficaci modelli OTC possono aumentare l’accessibilità e la convenienza degli apparecchi per milioni di adulti/anziani (234). Tuttavia, è importante che la diffusione di questi prodotti sia supportata da sforzi politici e normativi che ne garantiscano la sicurezza e l’efficacia (235). È fondamentale inoltre che gli utenti abbiano accesso, e possano beneficiare appieno, del supporto e dei servizi forniti a livello di comunità13 (236) (vedi Box 2.11). ii. Uso delle piattaforme eHealth e mHealth15 per istruzioni e formazione: Dato che l’amplificazione è solo una parte della cura dell’udito incentrata sulla persona, la mancanza del contributo dell’audioprotesista deve essere compensata dalla fornitura di istruzioni di alta qualità (227, 237). L’uso di eHealth e mHealth permette di migliorare l’accessibilità, l’uso e la convenienza di questi dispositivi per l’amplificazione dell’udito (238). Materiali multimediali online, basati sulle evidenze e disponibili gratuitamente possono migliorare la conoscenza e impartire le competenze necessarie per la gestione dell’apparecchio. Questi sarebbero particolarmente adatti se i materiali fossero adattati per soddisfare le esigenze specifiche di ciascuno (186). 15 eHealth si riferisce all’uso delle tecnologie dell’informazione e della comunicazione (ICT) per la salute (https://www.who.int/ehealth/ en/). mHealth è una componente di eHealth che include la pratica medica e di salute pubblica supportata da dispositivi mobili, come i telefoni cellulari, i dispositivi di monitoraggio del paziente, gli assistenti digitali personali (PDA) e altri dispositivi wireless (https://www.who.int/goe/publications/goe_mhealth_web.pdf). CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 107 iii. Formazione della manodopera disponibile a livello locale per l’adattamento e la manutenzione degli apparecchi acustici: (151, 239, 240) La formazione può migliorare l’accesso alla cura dell’udito, specialmente in ambienti dove la manodopera audiologica scarseggia. La sezione 3 fornisce ulteriori dettagli sull’adozione di un approccio condiviso dei compiti per colmare le carenze di risorse umane per la fornitura di cure uditive, compresi gli apparecchi acustici. Box 2.11 Regolamenti della Food and Drug Administration La Food and Drug Administration (FDA) degli Stati Uniti d’America aff erma che: 1. Un prodotto di amplifi cazione sonora personale (PSAP) è un prodotto elettronico di consumo indossabile destinato ai consumatori senza perdita di udito, per amplifi care suoni in certi ambienti, tra cui ad esempio, durante attività ricreative. 2. Un apparecchio acustico è uno strumento o un dispositivo indossabile, progettato e presentato allo scopo di aiutare le persone con udito compromesso. Un apparecchio acustico da banco (OTC) è considerato un prodotto diretto al consumatore e quindi non richiede la consultazione da parte di un professionista dell’udito. Tuttavia, la FDA chiede che ogni persona che acquisti un apparecchio acustico, sia comunque visitata, per escludere alcune patologie più gravi, legate alla salute delle orecchie, o che in caso contrario, il paziente fi rmi una rinuncia alla visita medica. 2.4.3 LINGUAGGIO DEI SEGNI E ALTRI MEZZI DI SOSTITUZIONE SENSORIALE PER LA PERDITA DI UDITO La preoccupazione più importante per la riabilitazione dei neonati e dei bambini con perdita di udito, è sicuramente quella di garantire loro uno sviluppo tempestivo del linguaggio. Il linguaggio nei bambini assicura un ottimale sviluppo cognitivo e socio-emotivo (241, 242) e può essere appreso anche attraverso mezzi non uditivi. LINGUAGGIO DEI SEGNI L’accesso alla comunicazione attraverso l’apprendimento del linguaggio dei segni fornisce uno stimolo necessario per facilitare lo sviluppo tempestivo dei bambini non udenti. L’accesso precoce alla lingua dei segni porta benefi ci a molti neonati e bambini non udenti (241-244) compresi quelli: © S oc ie ty fo r S ou nd H ea rin g In te rn at io na l Gli scolari sordi in India possono imparare e comunicare con l’uso del linguaggio dei segni WORLD REPORT ON HEARING108 i. che non hanno accesso ai servizi e alle tecnologie per l’udito. In questi casi, l’uso del linguaggo dei segni può garantire lo sviluppo cognitivo e facilitare la comunicazione. Inoltre il linguaggio dei segni permette ai bambini di ottenere un’educazione e avere un adeguato sviluppo socio-emotivo. ii. che vivono in ambienti con accesso alla tecnologia dell’udito e all’apprendimento del linguaggio parlato. Quando si prendono misure per assicurare che un bambino sviluppi le abilità del linguaggio parlato, l’apprendimento della lingua dei segni assicura che i bambini non subiscano alcun ritardo nell’acquisizione del linguaggio. Date le conseguenze di vasta portata della deprivazione linguistica nella prima infanzia, è essenziale affrontare questo problema il più presto possibile. Il linguaggio dei segni fornisce questa possibilità. Inoltre, l’apprendimento della lingua dei segni non ostacola o ritarda la successiva o simultanea acquisizione delle competenze linguistiche parlate. iii. le cui famiglie preferiscono usare la comunicazione non uditiva attraverso la lingua dei segni invece di, o in aggiunta, alla riabilitazione uditivo-verbale. LETTURA DEL PARLATO La lettura del parlato, in cui una persona comprende il linguaggio solo guardando la persona che parla, costituisce un importante mezzo di accesso alla comunicazione per coloro che hanno perso l’udito. I processi neurologici di fondo, infati, sono simili a quelli utilizzati per il riconoscimento uditivo delle parole (246). La lettura delle labbra è uno dei mezzi più comuni per la comprensione del discorso e comprende il guardare i denti, la lingua, le espressioni facciali, il linguaggio del corpo e altri spunti visivi per capire cosa una persona stia dicendo. Questa è una parte integrante della percezione del discorso (247) e, poiché richiede allenamento, deve essere considerata nelle strategie di riabilitazione dell’udito e del linguaggio (248). Tale addestramento dovrebbe essere ulteriormente supportato dall’addestramento uditivo e dall’uso del discorso parlato (248). METODI ALTERNATIVI DI COMUNICAZIONE I metodi alternativi di comunicazione sono particolarmente utili per le persone con doppia perdita sensoriale come la sordocecità, dove l’accesso alla comunicazione è ulteriormente difficoltoso. Tali metodi includono: “I linguaggi dei segni sono lingue umane naturali che esistono in numerose società. Come per le lingue parlate, i linguaggi dei segni mostrano livelli fonetici, fonemici, sillabici, morfologici, sintattici, discorsivi e pragmatici così come avviene nelle lingue naturali” (241, 245) CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 109 • Signing: include la comunicazione dei segni, le lingue supportate dai segni, le lingue codificate manualmente (ad esempio Signed Supported English), Total Communication, Simultaneous Communication e Cued Speech. Sono tutti termini che descrivono la comunicazione in cui una lingua parlata usa qualche altro spunto e supporto visivo. • Finger spelling: consiste nel compitare le parole con le forme delle dita sulla mano e può essere usato per supportare gli approcci orali. • Braille: è una forma di linguaggio scritto in cui i caratteri sono rappresentati da punti in rilievo che si percepiscono con la punta delle dita. • Tadoma: comporta che l’individuo sordo-cieco metta il pollice sulle labbra dell’oratore e le dita lungo la mascella per sentire i movimenti dell’oratore mentre parla (249). CASE STUDY L’apprendimento della lingua dei segni trasforma la vita in Uganda Nel 2009, Orianda Martin ha sentito parlare di Deaf Link Uganda (DLU) attraverso il suo Mobilisation Project, un progetto creato per valutare i bisogni educativi dei bambini sordi, le cui famiglie richiedono assistenza finanziaria per accedere all’istruzione. Orianda viveva nel distretto di Kumi, nell’Uganda orientale, dove la paura e la mancanza di conoscenze sulla sordità e l’incapacità di comunicare, lo avevano portato a subire abusi da parte dei membri della comunità. L’organizzazione DLU è stata in grado di identificare una scuola per sordi nella regione di Orianda e ha fornito l’assistenza finanziaria necessaria per l’iscrizione. Una successiva valutazione ha concluso che una scuola professionale per ciechi e sordi sarebbe stata più adatta per Orianda, dato che aveva iniziato a imparare a coltivare la terra prima di lasciare casa. Dunque, viene iscritto al centro di formazione professionale SIKRI per ciechi e sordi in Kenya e comincia subito a prosperare nel suo nuovo ambiente. Impara a comunicare usando il linguaggio dei segni e la comunicazione tattile e alla fine si laurea con un diploma in agricoltura e tessitura. Al ritorno in Uganda, la sua comunità lo accoglie e festeggia il suo successo, riconoscendo che in passato non erano stati in grado di comprendere i suoi disagi dovuti alla sordità. Un leader di DLU ha poi consegnato un potente messaggio a tutti coloro che erano venuti a celebrare i risultati di Orianda: “Le persone non udenti possono fare tutto ciò che chiunque altro può fare ed è per questo che devono essere incluse nella società”. Link web correlati: https://www.deaflinkuganda.org/project/educational-support/ ; https://www.youtube.com/watch?v=ksNLa3KJiAo WORLD REPORT ON HEARING110 2.4.4 TERAPIA RIABILITATIVA Sia che una persona nasca sorda o sviluppi la perdita dell’udito durante i primi anni, o in età adulta, la terapia riabilitativa è essenziale. Lo scopo di tale terapia è quello di migliorare le capacità percettive e le abilità comunicativo-linguistiche (250). ABILITÀ PERCETTIVE Le abilità percettive permettono di utilizzare al meglio il proprio udito residuo, se presente, o di ottimizzare i benefi ci della tecnologia acustica. Il migliore utilizzo dell’udito residuo può essere raggiunto attraverso un adeguato training uditivo e altre misure professionali, che sono la chiave per migliorare le capacità comunicative tra le persone con perdita uditiva, a tutte le età (186, 187, 251). Allo stesso tempo, come descritto in precedenza, la consulenza e le istruzioni sono importanti per migliorare l’uso delle tecnologie. ABILITÀ COMUNICATIVO-LINGUISTICHE Queste abilità mirano a migliorare le capacità linguistiche per permettere la comunicazione e facilitare l’istruzione. Il processo può avvenire attraverso un approccio orale tradizionale, terapia verbale uditiva, comunicazione totale, lettura del parlato, linguaggio dei segni o programmi bilingue (252, 253). Sebbene molto è stato scritto sull’effi cacia della terapia riabilitativa, specie nei bambini sordi e sui loro risultati linguistici ed educativi, i fattori principali che contribuiscono ai risultati individuali, includono l’età dell’intervento, la cura incentrata sulla famiglia, il supporto di un team multidisciplinare e le varie cure nel corso della vita (vedi Box 2.12). Le decisioni riguardanti la riabilitazione devono essere prese con la partecipazione dei genitori e con il coinvolgimento della famiglia. Questi fattori sono determinanti per i risultati della riabilitazione, poiché il successo degli interventi non dipende solo dalla fornitura del servizio, ma è infl uenzato signifi cativamente da come i genitori aff rontano gli interventi, dalla soddisfazione dei genitori stessi e da come gli interventi “si adattano” alla famiglia (107, 254, 255). © P ai ge S tr in ge r In Vietnam, un bambino con problemi di udito durante una terapia logopedica CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 111 Box 2.12 Fattori chiave per risultati riabilitativi ottimali nei neonati non udenti • Assistenza incentrata sulla famiglia: (104, 121, 254-259) la partecipazione dei genitori e delle famiglie nella cura di un bambino non udente è un forte fattore predittivo dei risultati. Le famiglie devono essere coinvolte fin dall’inizio e far parte di tutti i processi decisionali e di cura. I professionisti che forniscono assistenza devono essere formati alla comunicazione incentrata sulla famiglia. I programmi di riabilitazione devono essere “adattati alla famiglia”. • Intervento precoce: i neonati che vengono inseriti in programmi di intervento entro i primi mesi di vita possono conservare il linguaggio e lo sviluppo socio- emotivo corrispondente alla loro età cronologica (102-105, 107, 108, 121, 260, 261). Per questo, occorre che ai bambini venga diagnosticato il problema di udito, immediatamente dopo la nascita, il che è possibile attraverso i programmi di screening dell’udito neonatale. • Team di supporto multidisciplinare: (250, 259, 262) il supporto di un team multidisciplinare nella cura di un bambino non udente è l’ideale, e dovrebbe includere medici (neonatologi, otorinolaringoiatri, audiologi, pediatri di famiglia, neuropsichiatri), tecnici, terapisti e assistenti sociali, a seconda delle necessità. La composizione e le competenze di un team multidisciplinare dipendono dai bisogni del bambino e della famiglia. • Un forte meccanismo di monitoraggio e follow-up: (262-264) Un forte meccanismo di follow-up e un sistema di monitoraggio sono necessari a seguito di un programma di screening neonatale per assicurarne l’efficacia. • Approccio al corso della vita: (265, 266) se da una parte è importante che i neonati sordi ricevano assistenza e consulenza durante l’infanzia, dall’altra si deve anche fornire un supporto appropriato durante l’adolescenza e l’età adulta. EFFICACIA DELLA TERAPIA RIABILITATIVA PER LA PERDITA DELL’UDITO • L’intervento precoce e la terapia sono efficaci nel migliorare lo sviluppo del linguaggio, le abilità psicosociali, la qualità di vita e le funzioni della vita reale nei bambini e negli adulti (187, 261, 268-273). • La terapia riabilitativa è essenziale per garantire che le persone traggano beneficio dall’uso degli apparecchi acustici e degli impianti (187, 274, 275). Tale riabilitazione migliora l’accettabilità, l’efficacia e il rapporto costi-benefici di questi dispositivi. • La riabilitazione uditiva (con o senza l’uso di apparecchi acustici) è fondamentale per la comunicazione e la qualità della vita nelle persone con deficit cognitivi (193). WORLD REPORT ON HEARING112 CASE STUDY L’intervento precoce incentrato sulla famiglia aiuta i bambini con perdita di udito e i loro genitori Uno screening dell’udito neonatale di successo nell’Alta Austria permette di intervenire quasi immediatamente dopo la diagnosi di una perdita uditiva. I bambini a cui viene diagnosticata, sono comunemente indirizzati al Family-centred Early Intervention Program (FLIP) Linz,* che fornisce servizi a domicilio per bambini non udenti e con problemi di udito. FLIP lavora attraverso un team multidisciplinare che include logopedisti, educatori, assistenti sociali, fornitori di sostegno, genitori (“genitori alla pari”) e modelli di riferimento sordi. Gli interventi vengono effettuati direttamente a casa del bambino da logopedisti che educano e guidano i genitori a prendere decisioni consapevoli sulle diverse modalità e strategie di comunicazione. Le famiglie che decidono di intraprendere la via del linguaggio dei segni, sono supportate da una figura di riferimento non udente, per l’integrazione della lingua dei segni nella vita quotidiana della famiglia. Anche quelli che optano invece per l’uso della tecnologia uditiva, vengono aiutati nell’utilizzo della stessa. Le famiglie hanno diritto a un assistente sociale, che aiuti a compilare le domande necessarie a fornire informazioni sul sostegno finanziario. Inoltre, i “genitori alla pari” aiutano i genitori del bambino nell’elaborare la perdita uditiva del proprio figlio, oltre naturalmente a fornire informazioni sui vari sistemi educativi. Attraverso questo approccio incentrato sulla famiglia, il programma fornisce un piano educativo individuale su misura per ogni bambino, in stretta collaborazione con i genitori. Nel corso degli anni, centinaia di famiglie hanno beneficiato di questo approccio. Uno dei genitori iscritti al programma ha dichiarato: “Riceviamo un grande sostegno dal nostro logopedista che ci prepara in un modo che non ci saremmo mai aspettati. Un altro grande vantaggio è l’opportunità di parlare con altri genitori che stanno affrontando le stesse sfide e hanno fatto qualche passo in più di noi”. *Vedi: https://www.barmherzige-brueder.at/unit/issn/hoerbeeintraechtigung/babyskleinkinder “Sebbene nei paesi in via di sviluppo i problemi di salute ed economici potrebbero ostacolare i programmi di rilevamento precoce dell’udito e di intervento (EHDI), in realtà questi paesi hanno risorse che non si trovano facilmente nei paesi cosiddetti “sviluppati”. Qui, infatti, troviamo spesso comunità ben organizzate, in cui i membri lavorano insieme per il beneficio degli individui, così come troviamo la volontà di imparare nuove strategie per il miglioramento delle condizioni di vita (267) CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 113 CASE STUDY I veterani degli USA beneficiano dell’assistenza acustica Circa 28 milioni di americani convivono con l’ipoacusia, cioè oltre la metà degli adulti, over 75. Tra i veterani americani, i problemi di udito sono la più diffusa invalidità di servizio e più di 933.000 veterani percepiscono un indennizzo. Inoltre, solo 1 su 5 di coloro che hanno bisogno di un apparecchio acustico, ne utilizza effettivamente uno. Per affrontare questo problema, la Veterans Health Administration ha avviato un programma di audiologia destinato ai veterani (VA) per fornire un’assistenza sanitaria completa di qualità. Questo programma permette ai veterani di ricevere valutazioni complete e servizi di riabilitazione, comprese le tecnologie per l’udito più avanzate. Più di 1.100 audiologi impiegati nel programma, offrono assistenza in 400 luoghi di cura, insieme ad altri 400 logopedisti, in 190 siti. Secondo un audiologo che lavora per VA, questi servizi hanno avuto un impatto positivo sulla capacità dei veterani di migliorare la propria qualità di vita, permettendo loro di rimanere attivi e socialmente impegnati (276, 277). 2.4.5 TECNOLOGIA DI ASSISTENZA DELL’UDITO Oltre alla riabilitazione, la tecnologia di assistenza dell’udito è utile per migliorare l’accesso alla comunicazione. Migliorando la qualità del suono e la discriminazione del parlato, le nuove tecnologie supportano l’interazione di una persona con l’ambiente. La tecnologia assistiva per l’udito include sia software che hardware che possono essere utilizzati in diversi ambienti, tra cui casa, lavoro, scuola, incontri sociali, riunioni, ospedali, luoghi di culto e teatri. I diversi tipi di tecnologie assistive disponibili per l’udito, includono dispositivi per l’ascolto potenziato che migliorano il rapporto segnale/ rumore per un buon ascolto in ambiente rumoroso; dispositivi di allarme e dispositivi di telecomunicazione. DISPOSITIVI PER L’ASCOLTO MIGLIORATO Questi dispositivi migliorano l’uso degli apparecchi acustici e degli impianti cocleari e possono anche aiutare coloro che non usano questi strumenti. L’oratore parla in un microfono e il suono arriva direttamente in un ricevitore indossato dall’ascoltatore o integrato nell’apparecchio acustico o nell’impianto. Così facendo, il sistema taglia le interferenze e maschera gli effetti del rumore di fondo ambientale, rendendo il discorso più facile da comprendere. Il suo utilizzo migliora la capacità di ascolto di una persona e quindi è utile ad esempio all’interno delle classi. Il sistema rende anche più facile effettuare conversazioni in spazi pubblici, nei centri di assistenza sanitaria e anche nell’ambiente casalingo. WORLD REPORT ON HEARING114 Le tecnologie comuni utilizzate nei dispositivi di ascolto potenziato includono: • sistemi a modulazione di frequenza (FM) (217) - che convertono il suono in segnali FM (vedi Figura 2.8). • Sistema a infrarossi (278-280) - che utilizza i raggi infrarossi per trasmettere il suono. • Loop a induzione uditiva (281) - che trasmette un segnale audio direttamente in un apparecchio acustico tramite un campo magnetico. • Sistema cablato (282) - in cui il suono viene portato dal microfono al ricevitore attraverso una connessione cablata. Figura 2.8 Un sistema a modulazione di frequenza RELATORE Microfono indossato Trasmettitore indossato Trasmissione FM Propagazione acustica ASCOLTATORE Microfono apparecchio acustico Ricevitore apparecchio acustico Un sistema a modulazione di frequenza (FM) ha di solito due o più componenti: il microfono, con o senza trasmettitore, e un ricevitore collegato all’apparecchio acustico o al microfono. Questo sistema funziona bene per eliminare gli effetti del rumore di fondo e mantenere un input vocale costante, indipendentemente dalla distanza tra chi parla e chi ascolta. DISPOSITIVI DI ALLARME I dispositivi di allerta utilizzano suoni, luci, vibrazioni o una combinazione di questi, per attirare l’attenzione di una persona con perdita uditiva o completamente sorda. Esempi di dispositivi di allarme includono allarmi scuotenti, vibratori per cuscini, vibratori per letti, cercapersone vibranti, vibratori da polso, sveglie che vibrano e scuotono, segnalatore di movimento, segnalatore di fuoco e fumo e campanello segnalatore (283). CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 115 DISPOSITIVI DI TELECOMUNICAZIONE I dispositivi di telecomunicazione trasmettono messaggi parlati in un formato scritto. Esempi includono: (i) una telescrivente che funziona come un telefono a digitazione bidirezionale, dove qualcuno digita il messaggio e risponde alla teleconversazione; (ii) un telefono con sottotitoli, in cui le parole parlate sono convertite in testo. CASE STUDY La tecnologia promuove l’inclusione Sono stati sviluppati recenti ausili tecnologici per assistere le persone con perdita dell’udito: 1. quiet Taxi:* è stato lanciato da un’azienda leader nella produzione di automobili: si tratta di una tecnologia che aiuta i tassisti con problemi di udito ad avere un impiego sostenibile e ne garantisce la sicurezza. Impiegati nelle strade di Seoul, questi taxi sono dotati di vibrazione, text-to-speech, segnalatori luminosi e avvisi per una guida sicura. 2. oo<finderீ è un’applicazione mobile sviluppata dalla Hearing Loss Association of America, insieme a OTOjoy, che aiuta le persone a trovare i sistemi in loop per l’udito disponibili in America. Una persona può individuare dove siano disponibili sistemi in loop e anche segnalare qualsiasi luogo che abbia bisogno di un sistema ad anello. 3. StorySign: è un’applicazione mobile che facilita la lettura dei bambini sordi, traducendo il testo dei libri selezionati nel linguaggio dei segni. *Fonte: https://tech.hyundaimotorgroup.com/video/the-quiet-taxi/ 2.4.6 SERVIZI DI ASSISTENZA ALL’UDITO I servizi di assistenza all’udito includono misure come i sottotitoli e l’interpretazione del linguaggio dei segni. CAPTIONING (SOTTOTITOLI) Il captioning è il processo di conversione del contenuto audio di una trasmissione televisiva, webcast, film, video, CD-ROM, DVD, eventi dal vivo o altre produzioni di testo e di visualizzazione del testo su uno schermo, un monitor o un altro sistema di visualizzazione (284). È un importante mezzo per fornire l’accesso ai contenuti alle persone con perdita uditiva che si affidano principalmente alla comunicazione orale. Le didascalie non solo mostrano le parole come l’equivalente testuale del dialogo parlato o della narrazione, ma includono anche l’identificazione del soggetto parlante, con effetti WORLD REPORT ON HEARING116 sonori e descrizione della musica. Ulteriori informazioni sui sottotitoli sono fornite nel Box 2.13. Il sistema di sottotioli è di solito utilizzato per: • eventi dal vivo che si svolgono faccia a faccia, ad esempio riunioni, conferenze, spettacoli teatrali o eventi trasmessi in streaming online come webcast, eventi live sui social media, programmi televisivi. • Contenuti preregistrati come film, televisione, materiale video e audio. Box 2.13 I servizi di sottotitolaggio forniscono accesso a tutti In diversi paesi, i servizi di sottotitolaggio possono essere indicati in vario modo come: speech-to-text-reporting (STTR); speech-to-text-interpreting (STTI); Communication Access Traduzione in tempo reale (CART) o servizi speech-to- text. Gli utenti di solito sono coloro che hanno difficoltà di udito, con o senza l’apparecchio acustico o l’impianto. Per esempio, una persona che usa un apparecchio acustico può sentire bene in un contesto individuale, ma può avere difficoltà in una sala riunioni in mezzo a tante persone. I servizi di sottotitolaggio possono essere disponibili sia sul posto in cui avviene un evento o una registrazione, oppure possono essere utilizzati a distanza. Nei casi di sottotitoli a distanza, il sottotitolatore è in grado di ascoltare la/e persona/e in un altro luogo, tramite mezzi elettronici e i sottotitoli sono trasmessi rapidamente ed efficacemente agli spettatori/ascoltatori. La fornitura di tali servizi è una componente importante nell’attuazione degli articoli 5 e 9 della United Nations Convention on Rights of Persons with Disabilities (285), ratificata da 163 Stati membri. Il sottotitolaggio dà potere agli utenti e assicura la loro inclusione nelle attività sociali, ricreative e negli eventi ufficiali. Gli utenti riferiscono spesso che l’uso dei sottotitoli è essenziale e dà loro un senso di adeguatezza. Un sondaggio condotto nel 2013 da Collaborative for Communication Access via Captioning (CCAC) su 220 intervistati, ha rilevato che oltre il 70% degli ipoacusici si sentiva incluso, meno stressato dalla propria perdita uditiva e più capace di partecipare, quando poteva utilizzare il sistema di sottotitoli. I commenti degli utenti dicevano (286): “MI SENTO INCLUSO. Non sono più un emarginato perché non posso sentire quello che succede”. “STT [Speech-to-text] mi permette di ascoltare la conversazione. Senza di esso, sono perso”. CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 117 CASE STUDY I sottotitoli promuovono una partecipazione paritaria tra le persone con problemi di udito* “Il sottotitolaggio è un mezzo di accesso inestimabile per molte persone con problemi di udito, me compreso. Mi affido ai sottotitoli ogni giorno per ottenere notizie e informazioni in televisione e per godermi programmi e film. Leggendo i sottotitoli, sono in grado di integrare il mio udito in modo da comprendere il significato del linguaggio usato da questi mezzi di comunicazione. Trovo inoltre che i sottotitoli siano preziosi per le riunioni su larga scala e per le discussioni di gruppo. Anche se porto gli apparecchi acustici, non sono in grado di captare i suoni a distanza; quindi i sottotitoli riducono questa barriera uditiva. L’uso di dispositivi di assistenza come i sistemi FM/Infrared e i loop, può essere di aiuto anche in questi contesti. Nelle discussioni in piccoli gruppi, che spesso si svolgono in ambienti rumorosi o in stanze con un’acustica scadente, le didascalie e i dispositivi di assistenza mi permettono di capire la conversazione e di partecipare come membro del gruppo. Il fatto che le riunioni del Forum Mondiale dell’Udito presso l’Organizzazione Mondiale della Sanità siano completamente accessibili con la fornitura di didascalie, e l’uso di suono amplificato attraverso i microfoni, mi ha permesso di contribuire efficacemente al lavoro. Senza i sottotitoli e i dispositivi di assistenza, in queste discussioni sarei stato solo un “visitatore”, non un vero partecipante e, quindi, non pienamente coinvolto. La rimozione di queste barriere, mi ha permesso di contribuire come membro paritario della società. Così come accade a me, succede anche ad altri nella mia stessa situazione, questa assenza di barriere uditive contribuisce allo sviluppo personale e alla autostima. Sogno che questa forma di accesso un giorno sia disponibile per tutte le persone con perdita uditiva che la richiedano a scuola, sul posto di lavoro, nelle chiese, nei teatri, nei cinema, sui mezzi di trasporto e nei luoghi di partecipazione comunitaria e politica. In pratica, in tutti i settori dell’attività umana”. *Fonte: contributo di Ruth Warick, presidente della Federazione internazionale delle persone con problemi di udito INTERPRETAZIONE DEL LINGUAGGIO DEI SEGNI L’uso della lingua dei segni serve per trasmettere le informazioni contenute nell’audio di un programma (parlato e altri suoni importanti) agli spettatori sordi e a quelli che prediligono l’utilizzo della lingua dei segni. L’interpretazione della lingua dei segni richiede la presenza di un interprete che possa tradurre il contenuto udibile nel linguaggio dei segni, rendendolo comprensibile dai partecipanti. Le lingue dei segni differiscono da paese a paese. L’uso di servizi di interpreti nella lingua dei segni nelle strutture sanitarie, facilita l’accesso degli utenti ai servizi sanitari (287) e può anche migliorare l’apprendimento in classe degli studenti non udenti (288). La fornitura di tali servizi è richiesta dall’articolo 9 della United Nations Convention on the Rights of Persons with Disability (289). Il valore della lingua dei segni nell’ambito dell’istruzione e della salute è spiegato nel Box 2.14. WORLD REPORT ON HEARING118 Box 2.14 L’interpretazione della lingua dei segni migliora l’accesso all’istruzione e ai servizi sanitari* Un’indagine condotta nel 2009 dalla World Federation of the Deaf ha rivelato che il 68% dei 93 Paesi presi in esame, non aveva accesso a interpreti professionali della lingua dei segni (290), così come richiesto dalla United Nations Convention on Rights of Persons with Disabilities (UNCRPD). Garantire la disponibilità e la qualità di questi servizi richiede un sistema di formazione, certificazione e pagamento degli interpreti, e di questa formazione non esiste alcun sistema su scala globale. Si stima che in Europa ci siano 8.491 interpreti professionisti della lingua dei segni - cioè un interprete per ogni 162 utenti della lingua dei segni, anche se c’è grande difformità tra i paesi, con rapporti che vanno da 1:8 in Finlandia a 1:6500 in Albania (246). Gli interpreti professionisti hanno seguito corsi a vari livelli, dalla formazione professionale, al conseguimento di un master. L’indagine europea condotta dagli utenti della lingua dei segni, ha evidenziato una sostanziale insoddisfazione per la mancata copertura delle esigenze di interpretariato, che vanno dal settore medico a quello educativo, dal settore comunitario al settore pubblico (291). Gli interpreti professionisti della lingua dei segni sono ancora meno nei paesi in via di sviluppo, dove molti di loro non hanno ricevuto alcuna formazione. Al fine di promuovere l’accesso agli interpreti qualificati e professionali, nel 2017 la Ghana National Association of the Deaf, in collaborazione con la Danish Deaf Association, ha avviato un programma di diploma in lingua dei segni in collaborazione con l’Università di Cape Coast.‡ Ad agosto 2019, ben 60 interpreti della lingua dei segni sono stati certificati attraverso questo programma; di loro 34 sono stati assunti presso agenzie e istituzioni governative. Altri interpreti, impiegati nei principali ospedali del Ghana, hanno garantito l’accesso ai servizi sanitari per le persone non udenti. *contributo da Kasper Bergmann della World Federation of the Deaf. ‡Vedi: https://gnadgh.org. Interventi consolidati, efficaci e basati sull’evidenza, grazie anche ai più recenti sviluppi in materia, forniscono una vasta gamma di opzioni per affrontare la perdita di udito. Le sezioni 3 e 4 delineano le soluzioni alle sfide affrontate in un approccio sanitario pubblico, che renda queste opzioni accessibili a tutti coloro che ne hanno bisogno. 2.4.7 ADATTAMENTI AMBIENTALI Se da una parte esistono diverse soluzioni studiate per i soggetti con perdita uditiva, dall’altra, migliorare l’ambiente acustico potrebbe ridurre questa disabilità, aumentando così l’accessibilità al suono e alla comunicazione. Questo è importante durante tutto il corso della vita e vale per diversi ambienti: in situazioni di apprendimento, come le aule, in ambienti sociali e culturali dove la comunicazione è fondamentale (inclusi ristoranti, CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 119 chiese, sale ricreative, case di cura) e in ambienti di vita quotidiana, come i supermercati. Una buona acustica è fondamentale per l’apprendimento dei bambini piccoli che hanno una conoscenza fonologica del mondo meno sviluppata rispetto agli adulti, e sono quindi meno in grado di ricostruire le informazioni verbali degradate (292). Un’acustica inadeguata rappresenta una sfida ancora più grande per i bambini con perdite uditive o problemi di apprendimento (292). L’apprendimento open plan sta diventando sempre più popolare in alcuni ambienti per migliorare l’insegnamento flessibile e le pratiche di apprendimento; tuttavia, le modifiche acustiche sono spesso trascurate e questo provoca una scarsa percezione delle informazioni uditive (293). Per gli adulti più in là con gli anni e con perdita uditiva, l’ascolto in ambienti difficili aumenta lo sforzo cognitivo, che è associato alla fatica e all’isolamento sociale (294, 295). Molti ristoranti e bar sono rumorosi, anche a causa della mancanza di arredi morbidi, il che aumenta il riverbero acustico (296). Il design universale degli edifici16 massimizza l’accessibilità (297) e avvantaggia gli anziani; i principi del design universale sono raccomandati nell’iniziativa Age Friendly Cities dell’OMS (298). 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Schomer P, Mestre V, Schulte-Fortkamp B, Boyle J. Respondents’ answers to community attitudinal surveys represent impressions of soundscapes and not merely reactions to the physical noise. J Acoust Soc Am. 2013;134(1):767–72. 300. Davies W, Adams, MD., Bruce, NS., Cain, R., Carlyle, A., Cusack, P, et al. Perception of soundscapes: an interdisciplinary approach. Applied Acoustics. 2013;74(2):224–31. WORLD REPORT ON HEARING136 Affrontare la sfida della forza lavoro in Zambia © R ac ha el H ap un da , Z am bi a CAPITOLO 2 STRATEGIE DI PREVENZIONE: LA PERDITA DELL’UDITO PUÓ ESSERE AFFRONTATA 137 In Zambia la cura dell’orecchio e dell’udito sono concetti abbastanza nuovi. In seguito alla risoluzione della World Health Assembly del 2017 sulla perdita di udito, il governo dello Zambia ha adottato un piano per sviluppare servizi EHC di qualità il più vicini possibili alle esigenze delle persone. La difficoltà principale deriva dal fatto che in Zambia ci sono solo cinque otorinolaringoiatri e un audiologo, per 17 milioni di abitanti, di cui il 4-6% ha una perdita uditiva e molti altri soffrono di malattie dell’orecchio. Usando il piano strategico nazionale ENT 2017-2021 come guida, e con il sostegno del governo tedesco e di quello scozzese, abbiamo lanciato un progetto pilota per formare infermieri e responsabili clinici che lavorano nel servizio sanitario nazionale del paese e forniscono assistenza primaria per le patologie dell’orecchio e dell’udito. Attraverso la diffusione sistematica di un piano di formazione a cascata, che si basa sui manuali di formazione dell’orecchio e dell’udito dell’OMS, negli ultimi 18 mesi sono stati formati 28 infermieri, 43 responsabili clinici e 133 operatori sanitari, in 92 diverse strutture. Con il loro sostegno, sono stati portati a termine 50 servizi di assistenza primaria all’orecchio e all’udito, presso centri sanitari periurbani e rurali di tutto il paese. Gli stessi operatori sanitari hanno messo in pratica anche delle competenze aggiuntive che li hanno aiutati ad affrontare problemi di orecchio e di udito, molto comuni all’interno della comunità. Oltre 15.000 zambiani, infatti, compresi quelli che vivono nelle zone rurali e nelle aree poco servite, hanno già beneficiato dei servizi forniti dal personale addestrato. Mentre il programma continua a crescere e a espandersi, grazie all’impegno politico del governo e alla dedizione dei suoi dirigenti sanitari, il paese è sulla buona strada per realizzare il sogno di “rendere le cure dell’orecchio e dell’udito accessibili a tutti”. Racheal Hapunda, coordinatrice del programma EHC, Ministero della Salute, Zambia WORLD REPORT ON HEARING138 CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 139 CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO La salute è un investimento nel futuro: il costo dell’inerzia è un costo che non possiamo permetterci. Dott. Tedros Adhanom Ghebreyesus, direttore generale dell’OMS, 2020 3.1 PANORAMICA O Le sfide chiave che il campo dell’assistenza all’orecchio e all’udito (EHC) devono affrontare sono raggruppate in tre categorie: 1) tendenze demografiche e della popolazione; 2) alfabetizzazione EHC e stigma associato alla perdita dell’udito; 3) problemi legati al sistema sanitario. O Le tendenze demografiche e della popolazione riflettono l’alta e crescente prevalenza globale della perdita di udito nel corso della vita. Entro il 2050, si stima che circa 2,5 miliardi di persone (1 ogni 4) soffriranno di ipoacusia, con quasi 700 milioni (1 ogni 14) che vivono con livelli moderati o superiori di perdita nell’orecchio migliore. O È dunque necessaria un’azione urgente di salute pubblica per mitigare questa crescita. Se da una parte le persone con perdita di udito di tutte le età e in tutti i gruppi di popolazione hanno bisogno di cure, dall’altra è necessaria un’attenzione speciale per le popolazioni vulnerabili, perché abbiano accesso alle cure per l’orecchio e l’udito e ad altri servizi sanitari. O La mancanza di informazioni precise e lo stigma che circonda le malattie dell’orecchio e la perdita dell’udito spesso limitano l’accesso alle cure. Anche tra gli operatori sanitari, le conoscenze relative alla prevenzione, all’identificazione precoce e alla gestione possono essere carenti, limitando così l’assistenza a coloro che ne hanno bisogno. WORLD REPORT ON HEARING140 O Le difficoltà incontrate nella fornitura dei servizi per l’udito, derivano da diversi elementi costitutivi dei sistemi sanitari: servizi clinici, risorse umane, accesso ai dispositivi, dati e indicatori, governance e finanza. O Durante tutto il corso della vita, i servizi clinici EHC devono essere accessibili, integrati nei servizi sanitari nazionali e forniti a tutti i livelli di cura. Nonostante la grande necessità di questi tipi di servizi, di solito sono disponibili a livello di assistenza primaria, e inconsistenti a livello secondario e terziario. O La sezione 3 fornisce informazioni e analisi sulla disponibilità delle risorse umane per la cura dell’udito, per ogni regione dell’OMS e per gruppi di reddito, e mostra delle disuguaglianze significative. Viene poi analizzato l’impatto delle carenze sui professionisti presenti, vengono descritti gli scenari di vita reale e proposte soluzioni come il task-sharing, in combinazione con altre strategie, per affrontare le lacune e aumentare la forza lavoro EHC. O Vengono evidenziate le questioni relative all’accessibilità degli apparecchi acustici e degli impianti cocleari in tutto il mondo: le stime mostrano che solo il 17% di coloro che beneficerebbero dell’uso di un apparecchio acustico, ne utilizza effettivamente uno. Questo divario varia dal 77% nella Regione europea dell’OMS, a uno scoraggiante 90% nella Regione africana dell’OMS. La ricerca rivela che l’uso dell’apparecchio acustico potrebbe ridurre, addirittura del 59%, gli anni vissuti con disabilità (YLD) associati a una perdita uditiva non affrontata. O La leadership del governo per l’integrazione dell’EHC è spesso carente, come evidenziato dalla mancanza di paesi con piani strategici per l’integrazione e mancanza di risorse finanziarie per affrontare le malattie di udito. O Anche se apparentemente insormontabili, in molte parti del mondo le sfide sono state superate grazie a paesi che hanno adottato strategie di salute pubblica. La sezione 3 propone soluzioni per affrontare queste sfide e fornisce esempi per metterle in pratica. Nonostante ci sia a disposizione una vasta gamma di interventi efficaci per prevenire e affrontare l’ipoacusia, la maggior parte di coloro che necessitano di cure uditive, non vi ha ancora accesso (1). Al fine di tracciare un percorso futuro nel campo della cura dell’orecchio e dell’udito, le sfide devono essere affrontate al meglio. I problemi principali riguardano tre categorie distinte: (i) tendenze demografiche della popolazione; (ii) alfabetizzazione e stigma dell’EHC; (iii) problemi del sistema sanitario. Attraverso la comprensione di questi punti, possiamo affrontarli al meglio. La sezione 3 delinea queste sfide ed evidenzia le opportunità per affrontarle. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 141 Entro il 2050, si prevede che 1 persona su 4 avrà un un problema di udito. 3.2 TENDENZE DEMOGRAFICHE DELLA POPOLAZIONE La perdita dell’udito è una condizione di salute ampiamente prevalente di diversa eziologia, che colpisce individui lungo tutto il corso della vita. La prevalenza della perdita uditiva è in costante aumento, guidata dalle tendenze demografiche globali e da fattori di rischio persistenti e crescenti. La tendenza globale attuale e quella prevista, sono delineate qui di seguito. 3.2.1 TENDENZE PREVISTE NELLA PERDITA DELL’UDITO I principali cambiamenti demografici previsti per i prossimi decenni sono la crescita e l’invecchiamento della popolazione, fattori che influenzeranno notevolmente l’epidemiologia della perdita uditiva (2, 3). Mentre la popolazione mondiale continua a crescere - la ricerca stima un aumento della popolazione globale dagli attuali 7,7 miliardi a quasi 10 miliardi entro il 2050 (2) - si prevede che entro il 2050, quasi 2,5 miliardi di persone avranno una perdita dell’udito di gravità lieve o superiore nell’orecchio migliore.17 Di questi 2,5 miliardi, quasi 700 milioni di persone avranno molto probabilmente una ipoacusia di gravità moderata o superiore (Figura 3.1). Così in tutto il mondo, entro il 2050, quasi 1 persona su 4 potrà avere un qualche grado di deficit uditivo, e 1 su 14 (almeno il 7%) avrà bisogno di cure per l’ipoacusia. Questo aumento si verificherà in tutte le regioni dell’OMS, ognuna in proporzione al proprio profilo di popolazione. Mentre l’aumento più significativo si verificherà probabilmente nelle regioni del Mediterraneo orientale e dell’Africa, dove il numero di persone con perdita di udito raddoppierà entro il 2050, il più alto numero di persone nel 2050 si registrerà probabilmente nel Pacifico occidentale (circa 760 milioni) e nel Sud-Est asiatico (circa 660 milioni) (Figura 3.2). I numeri crescenti rappresentati nella Figura 3.3 sono dovuti principalmente ai cambiamenti demografici, come l’aumento globale della popolazione che invecchia. Tuttavia, la perdita di udito non può essere considerata una conseguenza inevitabile dell’allungamento della vita: diversi fattori influenzano la traiettoria dell’udito di una persona (come delineato nella sezione 1). La prevenzione, attraverso un’azione urgente di salute pubblica, può mitigare parte di questa crescita prevista. Volendo affrontare i bisogni delle persone che nei prossimi anni subiranno una perdita uditiva, i paesi dovrebbero prepararsi a garantire una società ben funzionante e produttiva. 17 McDaid D, Park AL, Chadha S. Estimating the global costs of hearing loss. Int J Audiol. 2021;16:1-9. WORLD REPORT ON HEARING142 Figura 3.1 Aumento previsto della prevalenza di grado di ipoacusia moderato e superiore di perdita di udito, 2019-2050 Figure 3.1 Projected increase in prevalence of moderate and higher grade of hearing loss, 2019–2050 2019 2030 2040 2050 0 500 1000 1500 2000 2500 Numero di persone in milioni 711 430 509 612 1582 1889 2206 2497 Perdite di udito invalidantiTutte le perdite di udito Figura 3.2 Aumento previsto di tutti i gradi di perdita uditiva nelle regioni dell’OMS Figure 3.2 Projected increase in prevalence of all grades of hearing loss in WHO regions Numero di persone in milioni 2019 2030 2040 2050 Regione Africana Regione del Mediterraneo Orientale Regione Europea Regione delle Americhe Regione Sud Est Asiatica Regione Pacifico Occidentale 0 100 200 300 400 500 600 700 800 78 115 152 194 197213 228236 217 255 292322 401 479 573 666 546 656 731766 137 185 251 338 CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 143 Figura 3.3. Aumento previsto della prevalenza del grado moderato o superiore di perdita dell’udito nelle regioni dell’OMS 0 50 100 150 200 250 2019 2030 2040 2050Prevalenza (%) 23 30 40 50 58 60 67 71 63 67 78 86 110 130 153 178 136 170 198 214 40 56 75 98 Figure 3.3. Projected incr as in prevalence of moderate or higher grade of hearing loss in WHO regions Eastern Mediterranean Region 22 30 40 52 European Region 57 60 66 71 Region of the Americas 63 65 77 86 South-East Asia Region 110 129 156 185 Western Pacific Region 137 174 207 229 African Region 40 54 72 97 Regione Africana Regione del Mediterraneo Orientale Regione Europea Regione delle Americhe Regione Sud Est Asiatica Regione Pacifico Occidentale LE DIFFICOLTÀ POSSONO ESSERE SUPERATE • Gli sforzi di prevenzione devono essere rafforzati, specialmente di fronte a questi numeri in forte aumento. Tali azioni servono a controllare la curva di crescita prevista e a mitigare i costi associati (3, 4). Grandi studi di gruppo condotti in paesi ad alto reddito, come gli Stati Uniti, la Svezia e la Norvegia, mostrano un chiaro declino nella prevalenza specifica per età della perdita dell’udito negli ultimi decenni. La riduzione di esposizione al rumore sul lavoro e il declino delle infezioni dell’orecchio sono considerati responsabili di questa tendenza incoraggiante (5-7). Tuttavia, i numeri complessivi continuano ad aumentare, principalmente a causa dei cambiamenti demografici. CASE STUDY La prevenzione funziona! Nel 2002, tra le forze armate svedesi, è stata effettuata una implementazione rigorosa di un programma di conservazione dell’udito e dopo alcuni anni ne è stato valutato l’impatto. I risultati hanno dimostrato che l’incidenza della perdita uditiva nella popolazione colpita, è scesa di un terzo durante un periodo di cinque anni, passando dal precedente 7,9% al 2,3% - cioè lo stesso tasso di incidenza nella popolazione non esposta. Questo dato si è riflesso anche sulla diminuzione del tasso di perdita uditiva nel sistema di assicurazione professionale, che porta a benefici al datore di lavoro e ai dipendenti (8). WORLD REPORT ON HEARING144 3.2.2 LA PERDITA UDITIVA NELLE POPOLAZIONI VULNERABILI La difficoltà di accesso alle cure, non solo per la perdita dell’udito, ma anche per altri problemi di salute generale, risulta più marcata in alcune popolazioni vulnerabili. In genere, le popolazioni vulnerabili includono minoranze razziali ed etniche, bambini, adulti anziani, persone svantaggiate dal punto di vista socio-economico, persone con probemi di salute, persone LGQTBI18, immigrati, persone che si trovano in zone di guerra e di conflitto, prigionieri e persino famiglie di persone malate e in pericolo di vita (9). Le persone ipoacusiche incontrano grandi difficoltà nell’accesso ai servizi, a causa delle loro difficoltà di comprensione e comunicazione (10-13). I soggetti ipoacusici posso fare fatica anche a comprendere i messaggi di promozione della salute, a meno che non si presti particolare attenzione a questo aspetto (12). Queste difficoltà esistevano già prima della pandemia COVID-19, ma oggi sono state ulteriormente aggravate dall’uso dei sistemi di sicurezza individuale, come le mascherine e il sistanziamento sociale. Le persone ipoacusiche fanno molta fatica a sentire, anche se fanno uso dell’apparecchio acustico; l’uso delle mascherine infatti aumenta le difficoltà distorcendo il suono e nascondendo importanti spunti visivi (14).Negli ospedali, inoltre, i pazienti ipoacusici potrebbero incorrere in errori medici, causati da incomprensioni tra loro e gli operatori sanitari che indossano le mascherine (10, 15). L’uso delle mascherine, inoltre, ha una particolare rilevanza anche all’interno delle classi. In un sondaggio intrapreso dalla Hearing Health Foundation per valutare l’impatto della pandemia sulle persone con perdita dell’udito, l’85% degli intervistati ha riferito di essere in difficoltà a causa dell’incapacità di leggere le labbra coperte dalle mascherine. LE DIFFICOLTÀ POSSONO ESSERE SUPERATE •Quando si pianificano i servizi sanitari, inclusi quelli per la cura dell’udito, ogni paese dovrebbe prestare attenzione specifica ai bisogni dei soggetti più vulnerabili. • Le difficoltà di comunicazione associate all’uso delle mascherine potrebbero essere ridotte indossando modelli trasparenti che permettano agli altri di vedere le espressioni facciali e leggere le labbra. Ad esempio, i Centri statunitensi per il controllo e la prevenzione delle malattie hanno raccomandato agli insegnanti di indossare mascherine trasparenti quando interagiscono con bambini e giovani studenti ipoacusici. L’uso delle mascherine trasparenti è importante in ogni ambiente e può migliorare l’accessibilità per tutti, non solo per i soggetti con perdita uditiva. 18 LGQTBI: Lesbiche, Gay, Queer, Transgender, Bisessuali, Intersessuali “Per le persone sorde è davvero difficile, per non dire impossibile, riuscire a sentire da una distanza di almeno sei piedi, mentre un relatore ha la parte inferiore del viso coperto.” Sondaggio della Fondazione Salute dell’udito CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 145 CASE STUDY I Un’azione coordinata tra più parti può affrontare la cura dell’udito in tempi di guerra e conflitto Dopo quasi nove mesi di incessanti attacchi aerei, colpi di mortaio e autobombe che hanno colpito la città di Mosul, migliaia di residenti hanno avuto problemi di udito, che vanno dall’acufene, alla perdita profonda dell’udito. Molti civili esposti a ripetute esplosioni hanno sofferto di emorragie alle orecchie e molti hanno sviluppato una profonda perdita dell’udito neurosensoriale: per loro è diventato impossibile comunicare con gli altri e i bambini sono stati costretti ad abbandonare la scuola, anche dopo la fine della guerra. Per fornire servizi alle migliaia di persone bisognose, è stato aperto un centro specializzato per la perdita di udito, grazie alla collaborazione tra il principale ospedale della città e un’organizzazione umanitaria. Ad un anno dall’inizio dell’attività, il centro ha già fornito assistenza a migliaia di persone, applicando 2.000 apparecchi acustici e refertando molti soggetti bisognosi di impianto cocleare (16). CASE STUDY II Promozione della salute e servizi accessibili per le persone non udenti Le persone ipoacusiche (e quelle con altre disabilità) sono spesso escluse non solo dall’educazione alla prevenzione dell’HIV, ma anche dall’accesso ai test e al trattamento (12). Per affrontare questo problema, in Kenya sono stati istituiti con successo servizi di consulenza e test volontari (VCT) per l’HIV/AIDS, destinati alle persone sorde. I servizi VCT sono stati inseriti all’interno di un programma educativo rivolto alle persone non udenti. I peer educator (insegnamento da parte dei colleghi) hanno fornito informazioni utili per persone audiolese in luoghi come chiese, istituti di apprendimento, seminari e altri ambienti in cui le persone non udenti si riuniscono. Una strategia che si è dimostrata efficace nella promozione delle pratiche di prevenzione dell’HIV e poi nell’analisi attraverso il test (17). Parliamo ora degli Stati Uniti, dove per ridurre il rischio di malattie cardiache, alcuni operatori sanitari sono stati formati appositamente per migliorare la comunicazione con persone ipoacusiche. Questo ha portato a significativi miglioramenti nella nutrizione, nel benessere psicologico/gestione dello stress e nel miglioramento dell’attività fisica (18). WORLD REPORT ON HEARING146 La mancanza di informazioni e di conoscenze specifiche limita gli utenti e gli operatori sanitari nella cura di malattie dell’orecchio e ipoacusia, perpetuando lo stigma ad esse associato. 3.3 ALFABETIZZAZIONE DELL’ORECCHIO E DELL’UDITO E STIGMA LEGATO ALL’IPOACUSIA Il successo degli interventi di salute pubblica dipende non solo dalla loro efficacia e dalla loro disponibilità, ma anche da quanto le popolazioni siano preparate a riceverli. La conoscenza, l’atteggiamento e le pratiche della popolazione che riceve tali servizi sono molto importanti, così come lo sono quelle degli operatori sanitari che rendono possibili tali interventi. Le sfide attuali in questo contesto sono riassunte qui di seguito. 3.3.1 CONOSCENZA LIMITATA DELL’ORECCHIO E DELL’UDITO NELLA POPOLAZIONE IN GENERALE È ampiamente risaputo che le persone - comprese quelle con malattie importanti e potenzialmente in pericolo di vita - spesso evitano di ricorrere a cure mediche, anche quando pensano di doverlo fare (19, 20). Per comprendere le ragioni di questo fenomeno, sono stati condotti pochissimi studi, e ancora meno nel campo della cura dell’udito. La letteratura esistente rivela che anche quando le persone sono consapevoli del rischio di perdita di udito - come quando ad esempio sono esposti al rumore negli ambienti professionali o ricreativi - o quando hanno a disposizione mezzi di protezione (come tappi per le orecchie e paraorecchie), sono comuque riluttanti ad usarli. Questo potrebbe dipendere da diversi fattori: disagio nell’indossare i dispositivi, credenze e norme socio-culturali relative all’esposizione al rumore (21, 22), mancanza di valutazione della minaccia o sfiducia nei benefici derivanti dall’uso dei dispositivi. Ad esempio, le norme socio- culturali più diffuse possono influenzare gli atteggiamenti delle persone verso la musica ad alto volume (21, 22) e il loro comportamento negli ambienti rumorosi (23, 24). Alti livelli di intensità sonora, infatti, sono spesso accettati senza riserve, mentre al contrario i comportamenti protettivi, vengono visti con disappunto (25). CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 147 Questa riluttanza verso le cure si ripete anche per le malattie dell’orecchio, che sono spesso affrontate in modo errato o addirittura ignorate. Molto comune infatti è l’uso di rimedi casalinghi e pratiche potenzialmente dannose. Ad esempio, l’uso di coni per la pulizia dell’orecchio è ancora molto diffuso (26), così come l’utilizzo di cotton-fioc, sebbene sia stato dimostrato che queste pratiche spesso provocano traumi, occlusioni di cerume o infezioni (27-30). E questo nonostante le controndiciazioni ben illustrate sulla maggior parte dei prodotti in commercio. In alcuni casi vengono usati anche diversi tipi di oli e altri materiali non adatti, come fiammiferi, piume, spilli o matite, introdotti nelle orecchie per la pulizia (29, 31). Non solo l’uso di questi prodotti provoca traumi al canale uditivo, perforazioni del timpano e aumenta il tappo di cerume, ma possono far sì che corpi estranei rimangano incastrati nel canale uditivo (29, 31), provocando infezione o danni più gravi. Anche nei casi di forte dolore all’orecchio, in molte parti del mondo, le persone preferiscono usare rimedi casalinghi, come l’instillazione di succo di piante e olio caldo, o piuttosto farsi visitare da guaritori tradizionali, che invece possono causare gravi danni, piuttosto che benefici (32, 33). Questa mancanza di consapevolezza e di attenzione verso le cure permane anche quando le persone sviluppano una perdita uditiva. Molti soggetti infatti sono totalmente inconsapevoli della propria ipoacusia, specialmente quando il grado è lieve o moderato (34). Nonostante spesso vivano in contesti ben forniti, molte persone aspettano anni prima di sottoporsi a un test dell’udito o cercare assistenza (34, 35). E se pure la perdita viene identificata e vengono suggeriti interventi correttivi, le persone comunque ne rimandano l’utilizzo a una data futura indeterminata, sostenendo che “non c’è bisogno di usarli”, o che “per il momento sono in grado di gestire la situazione” (36). Questo atteggiamento si è tradotto in tassi costantemente bassi nell’uso dei dispositivi per l’udito e nell’adozione di apparecchi acustici, anche in paesi ad alto reddito, dove questi servizi sono più disponibili (35, 37). E questo fenomeno rappresenta un grande motivo di preoccupazione sanitaria, dato l’alto impatto dell’ipoacusia non affrontata sulla salute mentale, sulla capacità di lavorare e sulla qualità della vita e delle relazioni interpersonali. Gli alunni in Kenya imparano a conoscere l’orecchio e la cura dell’udito © S ee m a Ru pa ni S ha h In genere, coloro che affrontano l’esame uditivo, riconoscono che hanno riscontrato il problema oltre 10 anni prima. Hanno di solito 70 anni e hanno un problema di udito severo. Più è avanzata l’età in cui le persone decidono di sottoporsi all’esame uditivo, più sarà difficile l’adattamento all’apparecchio acustico. Come detto, spesso ci vogliono 10 anni perché un soggetto riconosca di avere un problema di udito (un tempo più breve, invece, per le altre patologie) (34). WORLD REPORT ON HEARING148 Anche nei bambini l’identificazione precoce e la gestione della perdita uditiva sono fondamentali. Molto spesso i genitori ignorano la necessità e la possibilità di uno screening dell’udito: anche l’educazione dei genitori dunque è importantissima al fine di identificare i fattori di rischio (38) e dunque mitigare il ritardo delle tappe del linguaggio nel bambino. Quando a un bambino viene diagnosticata una perdita uditiva, i genitori hanno bisogno di una consulenza e di diverse informazioni per compiere le scelte più adatte per un follow-up e una cura appropriata per il bambino (39, 40). Questa consulenza potrebbe non essere sempre disponibile o addirittura portare a una diagnosi ritardata. Informazioni errate possono anche portare a un basso livello di soddisfazione riguardo la riabilitazione e provocare addirittura frustrazione nell’uso degli apparecchi acustici, specialmente quando le aspettative sulle loro prestazioni non sono realistiche (34, 36, 39, 41, 42). LE DIFFICOLTÀ POSSONO ESSERE SUPERATE Se da una parte la risposta ovvia a questo problema è aumentare la consapevolezza dell’importanza delle soluzioni per la perdita uditiva, dall’altra questo obiettivo non è affatto facile da raggiungere. Per affrontare questa sfida, occorrono una serie di azioni: • È fondamentale fornire informazioni accurate, pertinenti, accessibili e comprensibili, informazioni che provengano da una fonte credibile e in modo cordiale. Una buona comunicazione, infatti, è la chiave per una salute pubblica che funzioni bene (43, 44). • L’attuazione dei programmi di screening dell’udito, per diversi gruppi a rischio, può assicurare infatti che le persone non affrontino l’impatto negativo della perdita, come risultato di una non consapevolezza delle proprie condizioni di salute (34). CASE STUDY I Un’informazione accurata e intuitiva può portare un cambiamento duraturo Il programma scolastico “Decibel pericolosi”* è un esempio di strategia efficace per promuovere pratiche di ascolto sicure tra i bambini in età scolare, durante gli anni della formazione. Consegnato come una singola breve sessione, il programma è stato valutato negli Stati Uniti d’America (45) e in Brasile (46). Gli studi hanno dimostrato la sua efficacia nel migliorare le conoscenze in materia e nell’influenzare positivamente gli atteggiamenti degli studenti di quarta elementare, riguardo ai suoni forti e alla protezione dell’udito. Per comunicazione sulla salute pubblica si intende lo sviluppo scientifico, la diffusione strategica e l’analisi delle di informazioni sanitarie rilevanti, precise, accessibili e comprensibili, comunicate ai (e dai) soggetti interessati, allo scopo di far progredire la salute della comunità (38). CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 149 L’implementazione di tali programmi, in un modo culturalmente avanzato su scala diffusa, potrebbe creare in futuro un impatto duraturo sulle tendenze della perdita uditiva. *Vedi: http://dangerousdecibels.org/education/outreach-program-overview/ CASE STUDY II Lo screening dell’udito è efficace Uno studio fatto a Washington, USA, ha valutato l’efficacia dello screening uditivo negli anziani. Lo studio si è basato sull’utilizzo degli apparecchi acustici in un gruppo di persone. I soggetti testati con tre diverse modalità di screening sono stati messi a confronto con adulti che non erano mai stati sottoposti a screening. I risultati indicano chiaramente che il tasso di assimilazione nel gruppo sottoposto a screening è addirittura il doppio rispetto a quello di coloro che non avevano effettuato alcuno screening. Lo studio ha poi esaminato il miglioramento della capacità di comunicazione riferito dai pazienti un anno dopo l’intervento. Un miglioramento significativamente maggiore è stato riportato nella popolazione sottoposta a screening, rispetto a quella non sottoposta al controllo (47). 3.3.2 ALFABETIZZAZIONE DELL’ORECCHIO E DELL’UDITO TRA GLI OPERATORI SANITARI I medici generici e gli operatori sanitari svolgono un ruolo fondamentale nel garantire che i bambini e gli dulti ipoacusici siano identificati in modo tempestivo e ricevano gli interventi di cui hanno bisogno (35). Gli operatori sanitari però non sempre sanno riconoscere i fattori di rischio che potrebbero aiutare nell’identificazione dell’ipoacusia (35, 39). La conoscenza dei comuni problemi dell’orecchio, come ad esempio l’otite media, può essere carente, così come l’importanza di affrontare per tempo questa condizione (48–50). Anche tra il personale degli screening neonatali, ci sono lacune critiche sulle cause della perdita di udito e il follow-up e molte volte si registrano ritardi nell’identificazione dei neonati con deficit uditivi (39, 51, 52). Senza queste conoscenze, gli operatori sanitari non sono in grado di impartire le informazioni necessarie e le indicazioni per garantire una diagnosi tempestiva e gli interventi appropriati per le persone che soffrono di un disturbo uditivo, così come non sono in grado di garantire un supporto continuo per le famiglie, durante la fase di riabilitazione. Inoltre, a causa della mancanza delle competenze necessarie, il personale medico ha spesso difficoltà a comunicare bene con chi ha difficoltà a sentire o è totalmente sordo (10-13). Accade di conseguenza che i bisogni dei soggetti non udenti rimangano spesso insoddisfatti. WORLD REPORT ON HEARING150 LE DIFFICOLTÀ POSSONO ESSERE SUPERATE La formazione degli operatori sanitari permette loro di: • fornire istruzioni appropriate per la cura dell’orecchio e la prevenzione della perdita di udito; • riconoscere le malattie dell’orecchio e individuare la perdita dell’udito, guidando le persone nella diagnosi e nella gestione; • fornire informazioni e consigli scientificamente accurati e culturalmente sensibili alla comunità (34, 39, 50, 53-55). CASE STUDY La formazione degli operatori sanitari di comunità porta benefici nella Regione delle Americhe* Nella regione delle Americhe dell’OMS, i Primary Ear and Hearing Care Training (PEHC-TR) sono stati ampiamente utilizzati per formare medici generici (GP), infermieri (sia qualificati che in formazione), operatori sanitari di comunità (CHW), insegnanti, pianificatori sanitari e coordinatori di programmi di organizzazioni non governative (ONG). Sono stati utilizzati anche per sensibilizzare quadri specialistici sul PEHC, tra cui chirurghi ORL, audiologi, pediatri, ostetrici, specialisti di salute pubblica e altri professionisti della salute. In un periodo di sette anni (2006-2012), in 9 paesi della regione delle Americhe, si sono svolti ben 96 corsi su PEHC (livelli base, intermedio e avanzato): Bolivia, Cuba, Repubblica Dominicana, El Salvador, Guatemala, Messico, Nicaragua, Paraguay e Perù, per un totale di 2.330 persone formate. Questa esperienza evidenzia la necessità di aumentare il numero e rafforzare le competenze dei professionisti dell’EHC (ad esempio, otorinolaringoiatri e audiologi) nei paesi a basso e medio reddito. Questo è molto importante per gli operatori sanitari di comunità, per esempio nelle attività di sensibilizzazione, diagnosi precoce e rapido invio dei soggetti interessati verso i servizi specialistici. Questo tipo di formazione sta raccogliendo benefici in tutti i Paesi. Ad esempio, in Bolivia, gli operatori sanitari formati hanno misurato l’udito di oltre 10.000 persone, di cui più di 2.000 sono state curate. Molti altri sono stati rimandati a ulteriori valutazioni e hanno ricevuto cure in centri di livello secondario. In alcune zone del Brasile, gli operatori sanitari di comunità (CHW) sono stati formati sulle terapie da applicare nella cura dell’udito dei bambini e ne è stata poi valutata l’efficacia (56). L’analisi dei dati ha confermato che la formazione è stata efficace nel migliorare le conoscenze degli operatori, in modo che fossero in grado di intraprendere una serie di azioni di promozione della salute e di controllo, compresa la presa in carico delle famiglie in tema di prevenzione e cura, la promozione di buone pratiche che migliorino le conoscenze sulla perdita dell’udito; l’identificazione del problema, il rinvio e il follow-up, il supporto alle famiglie dei bambini ipoacusici o che sono in fase di riabilitazione. * Fonte: informazioni fornite dal dottor Diego Santana del CBM (e rif: 51) CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 151 3.3.3 STIGMA ASSOCIATO ALLA PERDITA UDITIVA Lo stigma - dovuto alla perdita dell’udito, alle relative difficoltà di comunicazione e all’uso di apparecchi acustici - è forse l’impedimento più critico (39, 41) e viene affrontato in tutte le fasi della vita. Credenze culturali profondamente radicate e miti sulla perdita dell’udito persistono ancora oggi in molte comunità del mondo, dove un bambino sordo viene considerato come simbolo di cattivo presagio che può portare sfortuna sulla famiglia. Tali credenze rappresentano un problema. Poiché molte famiglie sono riluttanti a sottoporre un bambino a un test che potrebbe indicare una disabilità e in molti casi lo screening neonatale dell’udito viene ostacolato (39). Tali convinzioni possono essere ancora più dure e restrittive nei casi di doppia perdita sensoriale come sordocecità (57, 58). Tali opinioni sociali negative possono limitare il potenziale e le opportunità delle persone sorde e con problemi di udito (59). Se da una parte lo stigma verso i bambini può avere le conseguenze più gravi, dall’altra è altrettanto debilitante quando si incontra più tardi durante il corso della vita, per esempio con gli adulti che sviluppano la perdita dell’udito in giovane età o quando invecchiano. Lo stigma si manifesta di solito come una negazione delle difficoltà di udito e di comunicazione; si sceglie l’isolamento e non si indossa l’apparecchio acustico (60). Dal momento che la perdita di udito è generalmente ritenuta come un naturale processo di invecchiamento, una persona che usa un apparecchio può essere percepita come “vecchia” (56). Ma questo comportamento basato sull’età (61) può portare a lunghi periodi di negazione e dissimulazione del problema, che a sua volta portano a stress sociale nonchè al peggioramento delle condizioni di udito (60). Lo stigma legato all’uso degli apparecchi acustici è il fattore che ne limita l’uso; la dimensione e la visibilità del dispositivo infatti rappresentano le caratteristiche chiave che provocano la riluttanza degli utenti (60, 63). Le strategie di marketing mirano a promuovere i dispositivi più piccoli e meno visibili. Ma nello stesso tempo, queste scelte potrebbero rafforzare la convinzione che la perdita dell’udito e l’uso dell’apparecchio debbano essere tenuti nascosti (60, 64). In molte culture ancora oggi, la sordità è attribuita a cause come l’impurità del sangue, la stregoneria, gli spiriti, gli antenati o a qualche punizione per la mancata esecuzione di certi riti culturali. Poiché l’arrivo di un neonato è un evento gioioso e carico di emozione per i genitori e per l’intera famiglia, l’idea di sottoporre bambini apparentemente normali a test per una possibile anomalia nascosta, è un’ipotesi che non viene accettata (39). Il fattore legato all’età tende a emarginare le persone anziane all’interno delle comunità, riducendo il loro accesso ai servizi, compresi l’assistenza sanitaria e sociale e limita l’uso del capitale umano e sociale da parte delle popolazioni anziane (62). WORLD REPORT ON HEARING152 CASE STUDY Testimonianze personali citate da Wallhagen 2010 (64) “Credo che molti ragazzi soff rano di miopia. Ma la perdita dell’udito sembra essere ancora associata all’invecchiamento... il fatto di portare un grosso apparecchio acustico sembra dire: “Non faccio caso all’aspetto, ma sei vecchio”... Quindi io non voglio credere di essere vecchio. Ma poi il mio udito dice: “Aspetta un attimo, tu sei vecchio”. Voglio dire, specialmente se indossi qualcosa che comunica: “Ehi ragazzi, sapete, sono un vecchio!”. “Penso che ancora oggi ci siano alcune cose che le persone associano qualche disabilità fi sica o mentale. È la natura umana, credo. E... nel mio caso, sai, se ho, oltre agli occhi deboli, le orecchie deboli, oh mio Dio! Sai, è un altro piccolo handicap di cui, ovviamente non ti piace parlare”. “Penso che la perdita dell’udito sia descritta in quel modo nei fi lm, sapete, nei media... è un disturbo comune, viene associato all’invecchiamento e alla perdita di funzionalità e, sai, alla morte [ride], alla fi ne. Comincia a sembrare che tu stia scivolando via...”. LE DIFFICOLTÀ POSSONO ESSERE SUPERATE • Lo stigma associato al defi cit uditivo e l’uso delle tecnologie acustiche e del linguaggio dei segni possono essere superati attraverso una maggiore consapevolezza all’interno delle comunità e responsabilizzando le persone con ipoacusia. Lo stigma può essere aff rontato ad esempio prendendo come punto di riferimento alcuni modelli ipoudenti o sordociechi; promuovendo associazioni di persone audiolese e includendo le persone sorde nei dialoghi politici. CASE STUDY I modelli fanno la differenza! I programmi Deaf Role Models hanno giocato un ruolo importante nell’intervento precoce per molte famiglie degli Stati Uniti. I genitori normoudenti possono aver bisogno di sostegno per aff rontare le diffi coltà di comunicazione con il proprio bambino ipoudente. I Deaf Role Models sostengono i genitori condividendo esperienze, obiettivi di carriera e mettendo in evidenza il potenziale del loro bambino. I programmi si concentrano sulla comunicazione e incoraggiano i membri della famiglia nell’apprendimento della lingua dei segni per assicurare che il bambino abbia accesso a un ambiente comunicativo, che aiuti lo sviluppo precoce del linguaggio. La mancanza di comunicazione, e di conseguenza di azione, rappresenta un tentativo di sfuggire allo stigma sociale associato alla perdita uditiva (65). CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 153 Questo approccio ha portato a migliori risultati linguistici per i bambini audiolesi. Ha anche portato ad una maggiore consapevolezza nelle famiglie colpite da perdita di udito e le ha aiutate a capire che l’ipoacusia non deve limitare il bambino in alcun modo (66). Parlare della perdita uditiva può aiutare ad aࢆ rontare lo stigma ad essa legato © O zl em K on uk se ve n, T ur ke y WORLD REPORT ON HEARING154 Gravi lacune all’interno dei sistemi sanitari ostacolano la fornitura di servizi per la cura dell’udito in tutte le regioni e per tutte le fasce di reddito. 3.4 LE SFIDE PER I SISTEMI SANITARI E LE POTENZIALI SOLUZIONI Le sfide incontrate nel campo dell’assistenza all’udito si estendono al livello di sistema sanitario, dove la capacità di integrare questa forma di assistenza è spesso limitata. Queste, e altre sfide basate sui sei elementi costitutivi del sistema sanitario, sono descritte di seguito, con le soluzioni proposte (Figura 3.4). Figura 3.4 Strategie per rafforzare il sistema sanitario per l’IPC-EHC Leadership and governance Finanza Personale sanitario ,nformazioni sanitario Prodotti medici, vaccini e tecnologie SALUTE (CURA DELL'ORECCHIO E DELL'UDITO) SERVIZI CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 155 3.4.1 SERVIZI CLINICI Per garantire l’accessibilità durante tutta la vita, i servizi EHC devono essere integrati all’interno dei servizi sanitari nazionali ed erogati a tutti i livelli di cura (comunità, primaria, secondaria e terziaria). Nonostante l’evidente alto bisogno di questi servizi, i dati dei paesi indicano una mancanza di fornitura a tutti i livelli. Sebbene gli interventi per la prevenzione, l’identificazione e la gestione delle malattie dell’orecchio e della perdita dell’udito debbano essere avviati a livello comunitario e primario, questi sono per lo più non disponibili nei paesi a basso e medio reddito. Anche a livello secondario e terziario, la disponibilità di servizi EHC varia a seconda delle regioni e dei livelli di reddito. I dati provenienti da un numero relativamente piccolo di paesi, indicano che la maggior parte di essi non dispone di servizi EHC a livello comunitario e primario, e la disponibilità è debole a livello secondario a seconda delle regioni e dei gruppi di reddito. Ad esempio, solo il 38% della popolazione mondiale è coperta da servizi di screening dell’udito neonatale o infantile (67), nonostante l’efficacia di questa strategia nel garantire una riabilitazione ottimale dei bambini sordi e ipoacusici (come descritto nella sezione 2). Secondo un recente studio, quasi un terzo dei paesi ha servizi di screening dell’udito neonatale minimi o del tutto assenti (67) (vedi Tabella 3.1). Tabella 3.1 Copertura globale dello screening dell’udito neonatale e infantile* Copertura di Screenings Numero di Paesi Percentuale di Paesi Percentuale della popolazione mondiale GDP (nominal) per capita, average da 0% a < 1% 64 32.7 37.63 3.7 da 1% a 9% 14 7.1 7.42 3.9 da 10% a 49% 19 9.7 8.33 10.7 da 50% a 84% 17 8.7 6.72 14.4 da 85% a 100% 41 20.9 32.59 40.4 Dati assenti 41 20.9 6.09 8.6 Totale 196 100 98.78 Nota: Le voci non si sommano esattamente al 100% a causa dei territori dominati e in conflitto non elencati. PIL = prodotto interno lordo. *riprodotto con il permesso del Journal of Early Hearing Detection and Intervention (67) La fornitura dei servizi EHC è spesso limitata dalla mancanza di attrezzature e infrastrutture necessarie in contesti con scarse risorse (68-70) e i servizi clinici sono ostacolati dalle distanze che le persone devono comunemente percorrere per accedervi. Questa situazione è più marcata per coloro che vivono nelle comunità rurali: il problema riguarda tutti i servizi di assistenza sanitaria in generale, e dunque anche quelli per la cura dell’udito. È un problema che si incontra sia in ambienti a basso, che ad alto reddito (20, 71, 72). WORLD REPORT ON HEARING156 La pianificazione di questi servizi diventa ancora più complessa a causa di una eziologia della perdita uditiva spesso non precisa e della mancanza di competenza specializzata. Ad esempio, la chirurgia micro-auricolare è spesso necessaria per affrontare l’otite media, prevenire le complicazioni e riparare il funzionamento uditivo (vedi Sezione 2). Per il successo dell’impianto cocleare e di altri dispositivi acustici impiantabili, sono necessarie abilità chirurgiche avanzate e la diagnosi audiologica, specialmente nei bambini, richiede alte competenze specialistiche. La riabilitazione uditiva richiede spesso uno sforzo multidisciplinare, con una terapia prolungata, affinché i bambini sviluppino abilità linguistiche, acquisiscano un’istruzione e diventino indipendenti (73). Gli adulti che usano le tecnologie acustiche hanno bisogno di istruzioni, training uditivo e consulenze che ne garantiscano il massimo beneficio (53). Le malattie dell’orecchio e la cura della perdita uditiva dipendono dalla tempistica con cui vengono affrontate. I ritardi nell’intervento infatti aggravano l’impatto sulla salute, la comunicazione, la cognizione e possono influenzare negativamente anche i risultati finali (34, 74). Per garantire risultati ottimali, dunque, è fondamentale un approccio incentrato sulla persona. CASE STUDY Accesso alle cure acustiche in Malawi (72) “La grande distanza dall’ospedale QECH [Queen Elizabeth Central Hospital] era vista dalla maggior parte degli operatori sanitari come un ostacolo insormontabile per la presa in carico dei pazienti. Ad esempio, un operatore ha spiegato che il suo villaggio distava 100 km. da Blantyre e, a causa del terreno difficile, il viaggio durava almeno due ore e mezza. Il persorso prevedeva anche un passaggio a piedi o in bicicletta lungo delle colline ripide, prima di raggiungere il primo mezzo di trasporto pubblico. Quindi il viaggio era visto come molto impegnativo, soprattutto per i bambini”. Un assistente sanitario ha descritto le difficoltà di questo viaggio: “È un percorso lungo, immagina che si deve andare da qui a Goliati in bicicletta e poi camminare a piedi sulle colline. A Goliati poi si prende un minibus per Limbe e poi un altro per Queens. È un viaggio lungo e chi lo intraprende potrebbe arrivare a ricevere assistenza addirittura il giorno dopo” (72). CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 157 LE DIFFICOLTÀ POSSONO ESSERE SUPERATE • Adottare una pianifi cazione basata sull’evidenza può aiutare i paesi a scegliere le priorità e ad attuare gli interventi più adatti alle esigenze specifi che di ciascuno (75). Il pacchetto di interventi H.E.A.R.I.N.G. dell’OMS (delineato nella Sezione 4), e gli strumenti messi a disposizione dall’OMS, forniscono una guida concreta per intraprendere questa strada. CASE STUDY Bisogni diversi, strategie diverse Molti paesi, soprattutto (ma non esclusivamente) nel gruppo di quelli a reddito più alto (per esempio Germania e Regno Unito) hanno implementato i programmi di screening dell’udito neonatale, che avevano ottenuto risultati signifi cativi, minimizzando l’impatto negativo della perdita uditiva congenita (76-82) e massimizzando i risparmi sui costi (77, 78, 82). L’attuazione di tali programmi si è dimostrata effi cace per ridurre la perdita provocata dal rumore negli ambienti di lavoro (83, 84). Paesi come l’India hanno focalizzato l’attenzione sull’otite media come problema prioritario e hanno implementato gli strumenti e le iniziative per formare i lavoratori di primo livello verso questo obiettivo (85). Questi programmi sono fondamentali per un uso più effi cace delle risorse e possono essere intrapresi dai paesi attraverso la revisione delle prove e la discussione con gli stakeholder. • La formazione degli operatori sanitari e dei medici di livello primario e di famiglia che forniscono servizi e intraprendono la promozione della salute a livello comunitario e primario, può aiutare a migliorare il livello di conoscenza delle comunità riguardo le buone pratiche di EHC. La formazione può anche facilitare l’identifi cazione precoce di problemi comuni (50), e ridurre la barriera della distanza, assicurando che i servizi di base siano disponibili nelle immediate vicinanze. CASE STUDY La formazione nell’assistenza primaria alla cura dell’udito (PEHC) nelle Fiji migliora le conoscenze e le competenze tra gli operatori sanitari*. Si stima che il 9,6% della popolazione delle isole Fiji conviva con una perdita di udito invalidante, mentre il 6% dei bambini ha un’otite media cronica suppurativa. L’unica struttura dedicata all’otorinolaringoiatria si trova presso l’ospedale principale, il Colonial War Memorial Nelle Fiji la formazione sviluppa conoscenze e competenze tra gli operatori sanitari di primo livello © O h Ch un gh ye on , F iji WORLD REPORT ON HEARING158 Hospital, che fornisce un servizio specialistico a tutti i 900.000 abitanti delle Fiji. A causa del limitato accesso ai servizi specialistici, il 90% delle malattie dell’orecchio e dei problemi di udito è gestito da medici e infermieri nei punti infermieristici, nei centri sanitari e negli ospedali delle 20 suddivisioni. Con una formazione specialistica molto limitata per gli operatori sanitari, i pazienti sono spesso indirizzati a un ospedale terziario per semplici problemi all’orecchio come cerume, infezioni o corpi estranei inseriti nel condotto uditivo. Questo contribuisce a ritardi e complicazioni per quei pazienti che hanno bisogno di cure urgenti per infezioni e che sono in lista di attesa nella clinica otorinolaringoiatrica. Per affrontare questo problema e migliorare l’accesso alle cure di qualità, il Ministero della Health and Medical Services (MHMS) delle Fiji ha reso disponibile la formazione PEHC in tutto il Paese. Medici e infermieri hanno intrapeso un corso di formazione di due giorni, utilizzando le risorse di formazione PEHC dell’OMS, con l’aiuto di uno specialista in otorinolaringoiatria. La formazione si concentra principalmente sullo sviluppo delle abilità cliniche come l’anamnesi, l’esame dell’orecchio, la conduzione di semplici test dell’udito e l’igiene dell’orecchio. Durante un periodo di due anni, 313 operatori sanitari clinici primari sono stati formati e certificati in PEHC dal MHMS delle Fiji. Infine sono stati valutati risultati e impatto di questa formazione e si è evidenziato un significativo aumento delle conoscenze e delle abilità cliniche da parte dei tirocinanti. La qualità del management è aumentata da 5,4 a 7,3. Medici e infermieri ora riescono a diagnosticare e gestire le comuni malattie dell’orecchio e identificare la perdita uditiva. La formazione ha contribuito a ridurre il carico di lavoro dei pochi otorinolaringoiatri disponibili e ha anche contribuito a migliorare i livelli di consapevolezza delle cure otorinolaringoiatriche all’interno della comunità. *narrazione fornita dal dottor Oh Chunghyeon, ospedale CWM, Fiji • L’utilizzo di misure innovative, come la telemedicina, migliora l’accesso ai servizi, specialmente in comunità isolate o poco servite. Il potenziale della telemedicina è stato ulteriormente evidenziato dalla pandemia di COVID-19: con l’obbligo della distanza fisica, infatti la telemedicina ha rappresentato un’importante strategia preventiva (86). Un’indagine dell’OMS, condotta durante i mesi della pandemia, ha riportato una interruzione dei servizi per tutte le malattie non trasmissibili nel 75% degli Stati membri analizzati (87). Tra le strategie utilizzate per superare le interruzioni di servizi causati dalla pandemia COVID-19, l’uso della telemedicina per sostituire le consultazioni di persona è stato il più diffuso e senza dubbio uno dei più efficaci per garantire i servizi alle comunità, mentre l’accesso alle strutture sanitarie era limitato (87). Nel periodo del COVID-19, la telemedicina ha svolto un ruolo significativo nel migliorare l’accesso alle cure in aree remote e difficili da servire (88). Se applicata in modo efficace, la telemedicina ha la capacità di rivoluzionare la fornitura di cure per l’orecchio e l’udito, migliorando significativamente la qualità dell’assistenza sanitaria, aumentando l’accessibilità e l’efficienza. Nell’applicazione della telemedicina, però, vanno tenuti in considerazione alcuni fattori che ne garantiscano un uso efficace, sicuro ed etico. Questi sono riassunti nel Box 3.1. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 159 Box 3.1 Telemedicina: principi e usi Che cos’è la telemedicina? La telemedicina è la fornitura di servizi di assistenza sanitaria da parte di profes- sionisti della salute in contesti in cui la distanza rappresenta un fattore critico. I servizi di telemedicina, infatti, utilizzano tecnologie dell’informazione e della comunicazione per la diagnosi, il trattamento e la prevenzione delle malattie e delle lesioni, la ricerca, la valutazione e per la formazione continua dei fornitori di assistenza sanitaria - tutto con l’obiettivo di migliorare lo stato di salute degli individui e delle loro comunità. Benefi ci chiave I principali servizi che la telemedicina off re in termini di assistenza a distanza, inclu- dono teleconsulti per diagnosi, trattamento, follow-up e monitoraggio a distanza. Questi servizi sono forniti attraverso l’uso di strumenti come il telefono cellulare o fi sso, video, dispositivi collegati a Internet, piattaforme di chat, app o piatta- forme digitali (ad esempio Skype o e-mail) per la telemedicina. Oltre alla fornitura di servizi clinici, i servizi di telemedicina sono importanti anche per: • l’apprendimento a distanza dei professionisti, per facilitarne la formazione con- tinua e l’istruzione; • la costruzione di reti di ricerca collaborative per condividere le pratiche migliori e costruire le conoscenze comuni; • la gestione amministrativa, per esempio i servizi di fatturazione. , servizi di cura dellȆoreccKio e dellȆudito raggiungono le zone rurali dellȆAlasNa attraverso lȆuso della telemedicina © S am an th a Kl ei nd ie ns t R ob le r ,mmagine ricevuta e parere dell’esperto dato Paziente esaminato in un sito remoto e immagine trasmessa WORLD REPORT ON HEARING160 Considerazioni chiave Quando si utilizza la telemedicina, è importante che il servizio debba: • rispondere a un bisogno chiaramente percepito; • mettere il paziente al centro del servizio; • avere una struttura di governo chiara e responsabile e garantire il coinvolgi- mento politico; • coinvolgere le parti interessate a livello nazionale nella pianificazione e nella definizione delle priorità; • elaborare e attuare un piano strategico per l’integrazione nella visione nazi- onale della salute digitale, in linea con la politica o con la strategia nazionale esistente in materia di salute digitale; • stabilire una collaborazione con tutte le organizzazioni partecipanti e le istituz- ioni scientifiche; • coinvolgere i professionisti della salute che utilizzeranno e svilupperanno il nuovo servizio; • verificare la predisposizione culturale della popolazione verso la telemedicina; • garantire che la tecnologie utilizzate siano funzionali, facili da usare, accessibili a tutti, comprese le persone con disabilità e che siano potenzialmente applica- bili su larga scala; • garantire l’interoperabilità tra i sistemi, per facilitare l’integrazione con il sistema sanitario e le cartelle cliniche dei pazienti; • garantire modalità di rimborso e di capitalizzazione efficaci; • stabilire meccanismi meticolosi per le valutazioni; • identificare se ci sono standard di accreditamento per la telemedicina;19 • assicurare l’istituzione di regolamenti legali, etici, di privacy e di sicurezza o quadri di riferimento e meccanismi che garantiscano conformità. 19 In questo contesto, i governi e altri soggetti coinvolti possono impegnarsi con la International Society for Telemedicine & eHealth (ISfTeH): https://www.isfteh.org/. CASE STUDY La telemedicina porta i servizi EHC in zone remote dell’Alaska* In Alaska (il paese più grande degli Stati Uniti) la telemedicina è stata applicata con successo per superare le barriere della distanza tra pazienti e operatori sanitari (89, 90). In questo stato vasto e remoto, infatti, il 75% delle comunità non è collegato a un ospedale raggiungibile via terra, rendendo dunque necessario un viaggio in aereo ogni volta che si necessita di una visita specialista. La scarsità della popolazione e il basso rapporto tra medici e residenti contribuiscono ulteriormente ai ritardi nelle cure. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 161 Per affrontare queste difficoltà, i sistemi sanitari di proprietà delle tribù in tutto lo stato hanno sviluppato una rete di cliniche sanitarie nei diversi villaggi, dove gli aiuti sanitari di comunità (CHAs) forniscono assistenza medica di base nelle comunità remote, che altrimenti non avrebbero accesso diretto a medici o infermieri (91). Il network di telemedicina in Alaska, che si estende su oltre 250 comunità in tutto lo stato, supporta le CHA con il triage specialistico per tutti i tipi di problemi di salute. Questo sistema permette agli specialisti di elaborare piani di trattamento per i pazienti a distanza, coordinando l’assistenza fornita localmente dalle CHA e stabilendo quando è necessario recarsi in un ospedale regionale o terziario per una visita di persona, una diagnostica per immagini o un intervento chirurgico (92, 93). La maggior parte degli incontri di telemedicina invece si svolge in modo asincrono perché richiede un minimo di banda larga per la connessione Internet, caratteristica importante nelle comunità più remote che non sempre hanno un accesso ottimale alla rete. Per la cura dell’orecchio e dell’udito, le immagini otoscopiche e i test di base sono trasmessi dalle cliniche dei villaggi agli specialisti, che nel giro di poche ore, restituiscono un piano di trattamento alla CHA. La consultazione di telemedicina per le cure dell’udito è stata dichiarata equivalente all’esame fatto di persona e questo ha ridotto i tempi medi di attesa di ben 8 settimane per gli appuntamenti specialistici (94-97). Di conseguenza, la fornitura di servizi da parte delle CHA con il supporto della telemedicina è ora pratica standard per la cura uditive in tutto lo stato: dalla gestione della malattia dell’orecchio medio, alla pianificazione pre-operatoria, al follow-up post-operatorio. Più recentemente, la rete di telemedicina dell’Alaska è stata ampliata da cure cliniche per includere i servizi preventivi adottati nelle scuole. La telemedicina infatti è usata per collegare a un triage specializzato per ridurre la perdita uditiva, i bambini ipoacusici che vengono individuati attraverso lo screening effettuato nelle scuole, un problema affrontato dai programmi di screening in tutto il mondo (98). Una novità importante per i bambini nativi dell’Alaska, che hanno un’alta prevalenza di perdita uditiva dovuta alle infezioni (99). Questi modelli basati sulla telemedicina per la cura clinica e per la prevenzione, hanno implicazioni per le comunità remote di tutto il mondo, realtà in cui gli specialisti sono spesso situati in città lontane dai pazienti che ne hanno bisogno. *Fonte: racconto contribuito dalla dottoressa Susan Emmett, Duke University, USA 3.4.2 RISORSE UMANE Garantire un accesso equo ai servizi richiesti dipende da un personale sanitario qualificato che fornisca cure per l’orecchio e l’udito a diverse età e a tutti i livelli di assistenza. La mancanza di una forza lavoro adeguatamente formata rappresenta una barriera al miglioramento dei servizi. Il rapporto dell’OMS, Multi-country assessment of national capacity to provide hearing care, pubblicato nel 2014 (100) ha rivelato lacune sostanziali nella disponibilità di professionisti EHC, come medici otorinolaringoiatri, audiologi e logopedisti. Aggiornando le informazioni disponibili sulla base dei dati pubblicati e WORLD REPORT ON HEARING162 delle risposte al sondaggio, non si sono evidenziati sostanziali cambiamenti. I risultati di queste analisi, sono condivisi di seguito, con riferimento ad alcuni dei principali fornitori di servizi comunemente impegnati nella diagnostica, nella terapia e nella riabilitazione delle persone con perdita dell’udito (101). SPECIALISTI DI ORECCHIO, NASO E GOLA20 I professionisti otorinolaringoiatri forniscono cure specialistiche per le malattie dell’orecchio e di solito sono specializzati in materia di orecchio e udito. Ma a seconda delle diverse regioni dell’OMS e dei livelli di reddito dei paesi, si registrano significative differenze nella disponibilità di questi specialisti. Come descritto nella Figura 3.5a, circa il 56% di tutti i paesi della regione africana ha meno di uno specialista otorinolaringoiatra per ogni milione di abitanti, in confronto al 67% dei paesi della regione europea, che ha invece più di 50 specialisti per ogni milione di abitanti. In termini di reddito, il 78% dei paesi a basso reddito ha meno di uno specialista in otorinolaringoiatria per 1 milione di abitanti, mentre il 95% dei paesi ad alto reddito, e il 69% dei paesi a reddito medio- alto, ha oltre 10 otorinolaringoiatri per 1 milione di abitanti (Figura 3.5b). La mappa presentata nel Grafico 3.5c mostra la disponibilità di specialisti in otorinolaringoiatria in tutti i 138 paesi nei quali sono stati analizzati i dati. Figura 3.5a Densità di specialisti otorinolaringoiatri (ENT) tra le regioni OMS Figure 3.5a Density of (17 specialiࢌs among WHO regions 29 0 0 0 13 19 19 6 3 1 1 1 1 5 8 5 7 4 12 0 0 0 2 2 0 10 20 30 >50 <=50 and >10 <=10 and >1 <=1 Regione Europea Regione delle Americhe Regione Pacifico Occidentale Regione Sud Est Asiatica Regione del Mediterraneo Orientale Regione Africana Nummero di Paesi Numero di ENTs per milione 20 “ENT specialist” (o otorinolaringoiatra) si riferisce a medici che hanno ricevuto una formazione nella gestione delle malattie di orec- chio, naso e gola, attraverso un corso di laurea o diploma riconosciuto. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 163 Figura 3.5b Densità di specialisti di orecchio, naso e gola (ENT) nei gruppi di reddito della Banca Mondiale Figure 3.5 e sity of (17 specialiࢌs across World %anN income groups 0 10 20 30 22 7 13 0 24 20 2 0 20 8 >50 <=50 and >10 <=10 and >1 <=1 14 2 0 2 Reddito medio-alto Reddito alto Reddito medio-basso 4 0 Reddito basso Nummero di Paesi Numero di ENTs per milione Figura 3.5c Disponibilità di specialisti di orecchio, naso e gola (ENT) in 138 paesi per i quali erano disponibili dati Numero di dottori E NT per milioni di abitanti (000'000) 0 to <= 1 > 1 to <=10 >10 to <=50 >50 Dato non disponibile Non applicabile *Number of Ear, Nose, Throat (E NT) doctors per million population (WHO 2020) I confini e i nomi mostrati e le denominazioni utilizzate su questa mappa non implicano l’espressione di alcuna opinione da parte dell’OMS sullo status giuridico di qualsiasi paese, territorio, città o area o delle sue autorità o riguardo alla delimitazione delle sue frontiere o confini. Le linee punteggiate e tratteggiate sulle mappe rappresentano le linee si confine approssimative per le quali potrebbe non esserci ancora un accordo completo. © WHO 2020. All rights reserved. Data Source: WHO Ear and Hearing Care Workforce Poject January 2020 update Map Production: WHO BDD unit World Health Organization 0 2,500 5,000 7,500 Kilometers *Status as of January 2020. WORLD REPORT ON HEARING164 AUDIOLOGI21 Gli audiologi forniscono cure specialistiche per diagnosticare e affrontare la perdita dell’udito attraverso le tecnologie acustiche. La disponibilità di audiologi è più bassa nella regione africana dell’OMS, dove il 78% dei paesi ha meno di 1 audiologo per 1 milione di abitanti. La più alta disponibilità invece si vede nella Regione Europea, dove il 52% dei paesi ha una densità di più di 10 audiologi per 1 milione di abitanti (Figura 3.6a). In termini di livello di reddito, la differenza tra paesi ad alto e basso reddito è sostanziale. Come mostrato nella Figura 3.6b, il 65% dei paesi ad alto reddito ha più di 10 audiologi per 1 milione di abitanti, rispetto al 93% dei paesi a basso reddito e il 76% dei paesi a reddito medio-basso, che invece hanno meno di 1 audiologo per 1 milione. La Figura 3.6c presenta una mappa con la disponibilità di audiologi in tutti i 102 paesi per i quali erano disponibili dati. Figura 3.6a Densità di audiologi (AUD) tra le regioni dell’OMS Figure 3.a Density of audiologiࢌs among WHO regions 14 1 0 4 3 3 21 4 2 9 4 3 4 1 4 1 5 5 3 0 8 0 2 00 10 20 30 >50 <=50 and >10 <=10 and >1 <=1 Nummero di Paesi Numero di AUDs per milione Regione Europea Regione delle Americhe Regione Pacifico Occidentale Regione Sud Est Asiatica Regione del Mediterraneo Orientale Regione Africana 21 “Audiologo” si riferisce a una persona che ha seguito un corso di laurea o di diploma riconosciuto in audiologia. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 165 Figura 3.6b Densità di audiologi (AUD) nei gruppi di reddito della Banca Mondiale 0 10 20 30 >10 <=10 and >5 <=5 and >1 <=1 Figure 3.b Density of audiologiࢌs across World %anN income groups 6 19 8 4 14 5 00 14 10 0 20 5 6 0 Nummero di Paesi Numero di AUDs per milione Reddito medio-alto Reddito alto Reddito medio-basso Reddito basso Figura 3.6c Disponibilità di audiologi (AUD) in 102 paesi per i quali erano disponibili i dati Numero di audiolog i per milioni di abitanti (000'000) 0 to <= 1 > 1 to <= 5 > 5 to <=10 >10 *Number of Audiolog ists (A Ds) per million population (WHO 2020) © WHO 2020. All rights reserved. Data Source: WHO Ear and Hearing Care Workforce Poject January 2020 update Map Production: WHO BDD unit World Health Organization 0 2,500 5,000 7,500 Kilometers *Status as of January 2020. I confini e i nomi mostrati e le denominazioni utilizzate su questa mappa non implicano l’espressione di alcuna opinione da parte dell’OMS sullo status giuridico di qualsiasi paese, territorio, città o area o delle sue autorità o riguardo alla delimitazione delle sue frontiere o confini. Le linee punteggiate e tratteggiate sulle mappe rappresentano le linee si confine approssimative per le quali potrebbe non esserci ancora un accordo completo. Dato non disponibile Non applicabile WORLD REPORT ON HEARING166 LOGOPEDISTI22 Questo gruppo di specialisti è di solito coinvolto nella fornitura di terapia riabilitativa per le persone con perdita di udito. Tra le regioni dell’OMS, la più alta densità di logopedisti e terapisti del linguaggio si trova nella regione europea, dove il 69% dei paesi ha più di 50 terapisti della parola e del linguaggio per 1 milione di abitanti, seguita dalla regione delle Americhe, con il 33%. La densità più bassa è registrata nella regione africana, dove il 72% dei paesi ha meno di 1 logopedista e terapista del linguaggio, per 1 milione di abitanti (Figura 3.7a). In termini di livello di reddito, il grafico 3.7b mostra che il 79% dei paesi ad alto reddito ha una densità di 50 o più specialisti per 1 milione di abitanti, mentre l’87% dei paesi a basso reddito e il 66% dei paesi a reddito medio-basso hanno meno di 1 logopedista per ogni milione di abitanti. Il grafico 3.7c presenta una mappa con la disponibilità di terapisti del linguaggio in tutti i 124 paesi per i quali erano disponibili dati. Grafico 3.7a Densità di logopedisti (SLT) tra le regioni dell’OMS Figure 3.a Density of speecK and language tKerapiࢌs (6L7s) among WHO regions 27 1 0 8 10 3 21 3 33 7 5 5 3 4 1 3 3 5 1 1 0 5 2 0 10 20 30 Numero di Paesi Numero di SLTs per milione >50 <=50 and >5 <=5 and >1 <=1 Regione Europea Regione delle Americhe Regione Pacifico Occidentale Regione Sud Est Asiatica Regione del Mediterraneo Orientale Regione Africana 22 Il termine “Logopedista” si riferisce a una persona che ha un diploma o una laurea riconosciuta in logopedia (in alcuni paesi, la logopedia fa parte della formazione in audiologia). CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 167 Figura 3.7b Densità di logopedisti (SLT) nei gruppi di reddito della Banca Mondiale Figure 3.b Density of speecK and language tKerapiࢌs (6L7s) across World %anN income groups 0 20 10 30 40 21 5 6 4 35 5 4 0 00 2 13 10 9 19 >50 <=50 and >5 <=5 and >1 <=1 Numero di Paesi Numero di SLTs per milione Reddito medio-alto Reddito alto Reddito medio-basso Reddito basso Figura 3.7c Disponibilità di terapisti della parola e del linguaggio (SLT) in 124 paesi per i quali erano disponibili dati (000'000) 0 to <= 1 > 1 to <= 5 > 5 to <= 50 > 50 *Number of Speech-L ang uag e Patholog ists/Therapists (S L P s/ SL Ts) per million population (WHO 2020) © WHO 2020. All rights reserved. Data Source: WHO Ear and Hearing Care Workforce Poject January 2020 update Map Production: WHO BDD unit World Health Organization 0 2,500 5,000 7,500 Kilometers *Status as of January 2020. I confini e i nomi mostrati e le denominazioni utilizzate su questa mappa non implicano l’espressione di alcuna opinione da parte dell’OMS sullo status giuridico di qualsiasi paese, territorio, città o area o delle sue autorità o riguardo alla delimitazione delle sue frontiere o confini. Le linee punteggiate e tratteggiate sulle mappe rappresentano le linee si confine approssimative per le quali potrebbe non esserci ancora un accordo completo. Numero di S L T per milioni di abitanti Dato non disponibile Non applicabile WORLD REPORT ON HEARING168 INSEGNANTI PER I NON UDENTI23 Gli insegnanti per i non udenti sono professionisti appositamente formati per affrontare i bisogni educativi degli studenti sordi o con problemi di udito. Come mostrato nella Figura 3.8a, la più alta densità di insegnanti per non udenti si registra nella Regione delle Americhe e nella Regione Europea, rispettivamente con il 50% e il 42% dei paesi, che hanno più di 15 insegnanti per 1 milione di abitanti. La disponibilità più bassa si osserva nella regione africana, con il 35% dei paesi che hanno meno di 1 specialista per 1 milione di abitanti. Tra i paesi ad alto e medio-alto reddito, il 38% nella regione delle Americhe e il 44% nella regione europea ha più di 15 specialisti per 1 milione di abitanti, rispetto ai paesi a basso reddito, dove il 50% dei paesi ha meno di 1 insegnante per 1 milione di abitanti (Figura 3.8b). Figura 3.8a. Densità di insegnanti per non udenti (TOD) tra le regioni dell’OMS Figure 3.a. Density of teacKers of tKe deaf among WHO regions 8 1 4 6 5 2 8 3 3 4 9 2 3 4 5 1 2 2 7 1 0 1 3 2 0 6 4 2 8 10 Numero di Paesi Numero di TOD per milione >15 <=15 and >5 <=5 and >1 <=1 Regione Europea Regione delle Americhe Regione Pacifico Occidentale Regione Sud Est Asiatica Regione del Mediterraneo Orientale Regione Africana 23 Un “insegnante per non udenti” è un insegnante qualificato con le competenze e le conoscenze necessarie per fornire un insegna- mento di qualità agli studenti normoudenti, e con l’ulteriore qualifica obbligatoria e l’esperienza nell’insegnamento agli studenti sordi. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 169 Figura 3.8b Densità di insegnanti per non udenti (TOD) nei gruppi di reddito della Banca Mondiale Figure 3.b Density of teacKers of tKe deaf across World %anN income groups 0 10 20 4 3 8 6 4 12 6 5 10 5 6 10 11 5 0 >15 <=15 and >5 <=5 and >1 <=1 Numero di Paesi Numero di TOD per milione Reddito medio-alto Reddito alto Reddito medio-basso Reddito basso Figura 3.8c Disponibilità di insegnanti per non udenti (TOD) in 86 paesi per i quali i dati erano disponibili (000'000) 0 to <= 1 > 1 to <= 5 > 5 to <=15 >50 *Number of Teachers of the Deaf (ToD) per million population (WHO 2020) © WHO 2020. All rights reserved. Data Source: WHO Ear and Hearing Care Workforce Poject January 2020 update Map Production: WHO BDD unit World Health Organization 0 2,500 5,000 7,500 Kilometers *Status as of January 2020. I confini e i nomi mostrati e le denominazioni utilizzate su questa mappa non implicano l’espressione di alcuna opinione da parte dell’OMS sullo status giuridico di qualsiasi paese, territorio, città o area o delle sue autorità o riguardo alla delimitazione delle sue frontiere o confini. Le linee punteggiate e tratteggiate sulle mappe rappresentano le linee si confine approssimative per le quali potrebbe non esserci ancora un accordo completo. Numero di ToD per milioni di abitanti Dato non disponibile Non applicabile WORLD REPORT ON HEARING170 Oltre alle figure finora descritte, ci sono molti altri soggetti che giocano un ruolo significativo nella fornitura di cure per l’udito. Questi includono audiometristi, audioprotesisti, fornitori di apparecchi acustici, specialisti della riabilitazione e operatori sanitari di comunità. Le analisi di questi fornitori di servizi non sono riportate in questo rapporto, principalmente a causa della mancanza di dati e dell’incoerenza nella nomenclatura. Ciononostante, i risultati degli studi indicano chiaramente grandi variazioni nella disponibilità di risorse umane EHC, con rapporti significativamente bassi tra popolazione e fornitori di servizi in molte parti del mondo. CASE STUDY Disponibilità di forza lavoro EHC in Africa sub-sahariana, America Latina e Sud-Est asiatico (69, 102, 103) Diversi studi condotti in diverse regioni del mondo evidenziano l’immensa carenza globale di forza lavoro EHC. Uno studio basato sui dati raccolti in 22 paesi dell’Africa subsahariana, ha mostrato che tutti i paesi (ad eccezione del Sudafrica) hanno meno di 1 otorinolaringoiatra, audiologo o logopedista ogni 100.000 abitanti. E addirittura alcuni paesi, come ad esempio Burundi e Malawi, non hanno alcun logopedista. I confronti tra il 2009 e il 2015 hanno dimostrato che anche se il numero totale di specialisti è aumentato nell’aro di questo periodo, tenendo conto della crescita della popolazione, il rapporto tra gli specialisti ENT e la popolazione è effettivamente diminuito in alcuni paesi e ancora oggi persiste una grave carenza di professionisti. In America Latina, uno studio ha mostrato una differenza di oltre 30 volte, nel rapporto di specialisti otorinolaringoiatri distribuito nei vari paesi, passando dai 2,8 otorinolaringoiatri per milione in Guatemala, ai 61 in Argentina. In tutti i paesi analizzati, la densità di otorinolaringoiatri era concentrata principalmente nelle capitali e nelle grandi città, con le aree rurali che restano sempre svantaggiate. In Paraguay, per esempio, la densità nell’area della capitale era di 148,8 specialisti ENT per 1 milione di abitanti, con appena 4,1 unità nel resto del paese. Nel sud- est asiatico, un rapporto dell’OMS ha rivelato che tutti i paesi tranne la Thailandia (con 2,68 otorinolaringoiatri per 100.000 abitanti), avevano una densità di meno di 1 specialista per 100.000 abitanti. Il numero di audiologi, audiometristi, logopedisti terapisti della parola e del linguaggio e interpreti del linguaggio dei segni era ancora più basso, con tutti i paesi che avevano 0,5 o meno professionisti per 100.000 abitanti. In tutta la regione, il numero di insegnanti per persone sorde era più alto rispetto ad altri quadri EHC. Il Bhutan, per esempio, aveva un rapporto di 2,73 insegnanti per sordi per 100.000 abitanti, mentre la Thailandia 1,49 per 100.000. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 171 CARENZA DI FORZA LAVORO TRA GLI SPECIALISTI CHE SI OCCUPANO DI UDITO E CURA DELL’ORECCHIO: FATTORI CHE CONTRIBUISCONO, IMPATTO E SOLUZIONI Per valutare l’impatto reale delle carenze di risorse umane nell’ambito della cura dell’udito e stimare l’onere che grava sui professionisti esistenti, l’OMS fornisce un quadro che prende esempio da situazioni di vita reale. Gli scenari sono stati sviluppati utilizzando lo strumento WISN (Workforce Indicator for Staffing Needs) dell’OMS e hanno fornito un’indicazione molto prudente del divario tra le risorse umane attualmente disponibili e quelle invece che sarebbero necessarie per eseguire cinque interventi EHC comuni, tra cui: otoscopia e pulizia del cerume, valutazione dell’udito, adattamento degli apparecchi acustici, consulenza post applicazione dell’apparecchio acustico e la diagnosi delle condizioni comuni dell’orecchio come l’otite media acuta o cronica nei bambini. Il Box 3.2 riassume esempi di carenza di personale, per questo tipo di interventi EHC, in alcuni paesi selezionati. Una delle principali cause di questa carenza è la mancanza di adeguate opportunità educative e di formazione per lo sviluppo di queste figure. Le lacune principali nella formazione dei professionisti dell’udito sono state segnalate dall’OMS come più gravi nei paesi a basso e medio reddito del mondo (100). Anche nei paesi in cui le risorse umane per la fornitura di servizi sanitari e dell’udito sono disponibili in numero relativamente elevato, garantire la loro equa distribuzione è spesso un problema. E questo è dovuto principalmente a: • Concentrazione di professionisti e servizi di assistenza sanitaria nelle aree urbane; i rapporti città-campagna (urbano-rurale) sono fino a 36:1 in alcuni paesi (68, 69, 102). • Approccio prevalentemente clinico alla cura dell’udito tra i professionisti. Anche se è essenziale un approccio clinico, da solo è insufficiente a prevenire e affrontare il problema dell’ipoacusia; questo settore richiede infatti professionisti che possano fornire servizi di alta qualità a livello individuale, ma anche saper affrontare l’argomento a livello di comunità e di politiche pubbliche (74). Questo richiede che i professionisti del settore uditivo siano orientati anche verso gli aspetti di salute pubblica. • Mancanza di una terminologia standardizzata su ruoli e competenze professionali, può creare confusione tra coloro che lavorano nel campo dell’audiologia e della patologia del linguaggio (104). Il settore dell’orecchio e della cura dell’udito richiede professionisti in grado di fornire servizi di alta qualità a livello individuale, ma anche capaci di affrontare il soggetto a livello interpersonale, organizzativo, dal punto di viste della politica pubblica e di comunità (74). WORLD REPORT ON HEARING172 Box 3.2 Stima delle lacune nella forza lavoro EHC* 1) Diagnosi e gestione delle condizioni comuni dell’orecchio: Oman e India L’OMS ha stimato che in Oman, se tutte le 181mila persone con problemi di cerume dovessero essere trattate da specialisti otorinolaringoiatri, ne sarebbero necessari almeno 137,40 in più rispetto a quelli attualmente disponibili. Questo divario di disponibilità può essere quantificato in un rapporto di 0,7, che indica che l’Oman ha solo il 70% di forza lavoro per fornire il trattamento alle persone con problemi di cerume. E questa è una sottostima del vero divario, poiché questo scenario presuppone che gli otorinolaringoiatri trattino solo i pazienti con problemi all’orecchio, quando in realtà forniscono assistenza anche a persone con malattie del naso, della gola, della testa e del collo. Questa opzione è quindi chiaramente insostenibile, data l’attuale disponibilità di specialisti ORL. Nel paese infatti ci sono molti più medici di base, perché lo stato ha investito nella loro formazione per garantire assistenza sanitaria, soprattutto nelle scuole. È stato stimato che se gli specialisti ENT in Oman condividessero con altri medici alcune delle attività di diagnosi e trattamento dei tappi di cerume, il loro carico di lavoro si ridurrebbe fino al 47%. Una valutazione simile nella città di Delhi, in India, ha dimostrato che ci vorrebbero 1.075 otorinolaringoiatri per identificare e diagnosticare tutti i pazienti di età compresa tra 0-15 anni con comuni malattie dell’orecchio. Attualmente, ci sono meno di 650 otorinolaringoiatri specialisti in città, il che indica un rapporto di 0,6. Il numero di medici di base disponibili in città invece è molto più alto. Quindi potrebbe essere utile condividere con loro questo genere di attività. Anche gli operatori sanitari di primo livello potrebbero giocare un ruolo chiave nel migliorare l’identificazione delle comuni malattie dell’orecchio (55, 102). Condividere i compiti con altri specialisti, infatti, potrebbe potenzialmente ridurre il carico di lavoro degli otorinolaringoiatri di Delhi, addirittura del 50%. 2) Valutazione dell’udito: Zambia La valutazione audiologica è quasi sempre affidata agli audiologi, la cui disponibilità è limitata in molte parti del mondo, specialmente nei paesi a basso e medio reddito. In Zambia, ad esempio, si stima che con una popolazione di oltre 17 milioni di abitanti, sarebbero necessari più di 600 audiologi per la misurazione dell’udito a tutti coloro che potrebbero potenzialmente avere una perdita. Dal momento che c’è solo 1 audiologo qualificato e 14 audiometristi che soddisfano le esigenze dell’intero paese, ci sono grandi problemi per la fornitura dei servizi di EHC. Il rapporto tra personale esistente e personale richiesto è 0,01, il che indica che la disponibilità attuale soddisfa appena l’1% del personale sanitario in grado di individuare le persone con perdita. Per aumentare i sanitari in grado di fornire questo tipo di servizi, anche gli infermieri sono stati istruiti per effettuare test dell’udito in aggiunta ai loro altri compiti (105). Questo porterà alla riduzione del carico di lavoro degli audiologi di circa il 48%. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 173 3) Applicazione degli apparecchi acustici: Cile Anche se solitamente l’applicazione dell’apparecchio acustico spetta agli audiologi, se necessario possono imparare a farlo anche altri sanitari (50, 55, 106). L’OMS ha esaminato la disponibilità di servizi di adattamento degli apparecchi acustici in un ospedale di Santiago del Cile. Un ospedale di livello terziario che si occupa della salute delle persone, avrebbe bisogno di 78 professionisti per applicare l’apparecchio a tutti coloro che ne hanno potenzialmente bisogno. Il rapporto di 0,01, simile a quello osservato in Zambia, indica che attualmente l’ospedale soddisfa appena l’1% del fabbisogno di forza lavoro per questo tipo di interventi. Poiché attualmente nell’ospedale c’è solo un dirigente sanitario, i tecnici specializzati nell’adattamento degli apparecchi acustici svolgono anche i test dell’udito. 4) Consulenza per l’uso degli apparecchi acustici e degli impianti cocleari: Federazione Russa È importante che le persone che utilizzano gli apparecchi acustici siano adeguatamente istruite sul loro uso e ricevano una consulenza costante, come parte del processo di riabilitazione uditiva (54). Questo ruolo di solito è svolto dagli audiologi che applicano gli apparecchi acustici. Sebbene l’OMS abbia stimato che nella Federazione Russa ci sia bisogno di 932 audiologi per fornire questo servizio, nel 2018 ce n’erano appena 389, con un divario tra la forza lavoro esistente e quella richiesta di 0,42. Condividere questo compito con altri medici, come logopedisti e audiometristi, potrebbe essere utile non solo a soddisfare le esigenze della comunità, ma anche nel ridurre l’attuale carico di lavoro degli stessi audiologi di quasi il 54% (101). LA CONDIVISIONE DEI COMPITI COME MEZZO PER AFFRONTARE LE LACUNE TRA LA FORZA LAVORO IMPIEGATA NELLA CURA DELL’UDITO Il task-sharing prevede la ridistribuzione dei compiti clinici, o delle loro funzioni-chiave, tra diverse figure sanitarie. A differenza del task-shifting, i compiti non vengono presi da un medico e affidati a un altro, ma piuttosto viene data la possibilità a più medici di assumere compiti o azioni specifiche. La riallocazione appropriata dei compiti, da operatori sanitari altamente qualificati ad altri operatori sanitari con una formazione meno qualificata, rende più efficiente l’uso delle risorse umane disponibili (107). Compiti tradizionalmente svolti da specialisti nel campo della cura dell’orecchio e dell’udito possono essere svolti da non specialisti, come ad esempio gli operatori sanitari di comunità, gli assistenti sanitari, gli infermieri e i tecnici (50, 55, 102, 106). Questo approccio è stato adottato con successo anche in altre aree mediche con carenza di risorse (107-109); nel campo della cura dell’udito, questo metodo può migliorare l’accesso a servizi come: WORLD REPORT ON HEARING174 • identificazione e cura delle malattie comuni dell’orecchio, come ad esempio tappo di cerume, otite media cronica e acuta; • valutazione e screening dell’udito; • consulenza su fitting e post-fitting dell’apparecchio acustico. Nel Box 3.3 sono riassunti i ruoli tradizionalmente ricoperti dagli specialisti in otorinolaringoiatria e la possibilità di condivisione dei compiti (laddove gli specialisti tradizionali non rischiano da soli a coprire tutto il fabbisogno della popolazione) e si basano su studi attualmente disponibili, grazie agli esperti (50, 55, 69,106, 110). La condivisione delle attività dovrebbe far parte di una strategia globale e collaborativa per la forza lavoro, che coinvolga tutte le figure interessate, compresi i professionisti EHC e gli altri operatori sanitari, con l’obiettivo di migliorare l’accesso a servizi altamente specializzati per coloro che ne hanno bisogno. Quando si sviluppa una strategia razionale per la forza lavoro, considerazioni importanti sono: (50, 55, 106-108) • Occorre implementare la condivisione dei compiti per aumentare il numero complessivo degli operatori sanitari, compresi quelli altamente specializzati. • La condivisione dei compiti deve essere preceduta da un’analisi della situazione e da una valutazione delle risorse umane disponibili per la cura dell’orecchio e dell’udito. • Devono essere definite le esigenze e le procedure di formazione, insieme alla garanzia di meccanismi di qualità. • I compiti assegnati ai diversi medici dovrebbero essere conformi alle norme sanitarie di ciascun Paese. • I dispositivi automatizzati o la telemedicina possono essere strumenti utili per migliorare il successo di questa condivisione di compiti. Quando i ruoli e le responsabilità sono condivisi da specialisti esperti e personale non qualificati, occorre sempre la supervisione da parte dei medici ORL e degli audiologi. Infermiere formate forniscono servizi di prossimità nelle zone poco servite dello Zambia © R ac ha el H ap un da , M in is tr y of H ea lth , Z am bi a CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 175 Box 3.3 Possibilità di condivisione dei compiti tra diversi quadri di professionisti EHC Operatori sanitari di primo livello e infermieri* Medici di base Audiologi Specialisti dell’orecchio, naso e gola Logopedisti 6creening udito 6creening a livello comunitario e rinvio 6creening a livello di comunità 6creening a livello di comunità Valutazione della perdita dell’udito Diagnosi audiologica negli adulti con il riconoscimento di bandiere rosse che indicano la necessità di cure specialistiche Diagnosi audiologica in adulti con riconoscimento di bandiere rosse Montaggio apparecchio acustico 1egli adulti senza alcuna bandiera rossa Principalmente in adulti senza bandiere rosse Principalmente in adulti senza alcuna bandiera rossa Riabilitazione udito 7raining uditivo e consulenza per adulti 7raining uditivo e consulenza per adulti ,dentificazione della cura per malattie dell’orecchio comuni (cerume, otite media) ,dentificazione e assistenza nel livello di cura primario nella comunità, rinvio Diagnosi e gestione di comuni con- dizioni senza complicanze 7riaging, diagnosi e gestione di condizioni dell’orecchio senza complicanze Ruoli tradizionali Possibili ruoli *include i professionisti esistenti di operatori sanitari e altri professionisti che potrebbero essere formati per fornire assistenza a livello pri- mario (111) LE DIFFICOLTÀ POSSONO ESSERE SUPERATE La mancanza di risorse umane deve essere affrontata attraverso strategie innovative per facilitare l’accesso alle cure dell’orecchio e dell’udito. Tali strategie devono concentrarsi su: • aumento del personale sanitario che fornisce cure per l’orecchio e l’udito attraverso: – maggiori opportunità per l’istruzione e la formazione dei dirigenti professionali, tra cui otorinolaringoiatri, audiologi, logopedisti, insegnanti di lingua dei segni, audioprotesisti, audiometristi, secondo le esigenze del paese (112). Oltre a stabilire programmi educativi all’interno del paese, alte opzioni possono essere la collaborazione con esperti provenienti da fuori regione o fuori paese (50). WORLD REPORT ON HEARING176 – La condivisione dei compiti come mezzo per ridurre la necessità di professionisti altamente qualificati e ridistribuire le attività abitualmente svolte da questi specialisti, tra diversi operatori sanitari disponibili nel paese (50, 55, 69, 106) che hanno minori necessità di formazione. • Aumentare la capacità del personale sanitario disponibile impegnato nella fornitura di EHC: – Per i professionisti nel campo dell’otorinolaringoiatria, audiologia e logopedia, questo potrebbe comportare l’inclusione di un modulo che si concentri sugli aspetti di salute pubblica dei problemi dell’orecchio e dell’udito come parte dell’istruzione e della formazione professionale (39, 44, 113). – Per gli operatori sanitari di primo livello e gli operatori di comunità, gli infermieri e altri soggetti impegnati nella fornitura di cure e nella sensibilizzazione della popolazione (50, 106), questo richiederebbe: ‚ formazione per aggiornare conoscenze e competenze; ‚ sostegno nella fornitura di servizi attraverso l’uso della tecnologia, tra cui la Mobile Healt (fornitura di servizi di assistenza medica attraverso dispositivi di comunicazione mobile) e la telemedicina (55, 114). CASE STUDY I Sviluppare l’educazione audiologica in Cina Negli anni ȅ90, la Cina ha riconosciuto la necessità di specialisti nel campo dell’audiologia e della logopedia. Per affrontare questa carenza di risorse umane, il China Research and Rehabilitation Centre for Hearing and Speech Impairment ha stabilito un approccio su più fronti che includeva: 1. Programmi educativi specializzati: Nel 1995, ha preso il via un programma educativo per formare professionisti dell’udito e del linguaggio, in collaborazione con le principali università del paese. Ad oggi, sono stati formati oltre 1.000 professionisti che forniscono assistenza all’interno dei centri nazionali di riabilitazione dell’udito e del linguaggio. Nei prossimi anni, la China Disabled Persons’ Federation mira a fondare la China Rehabilitation University. 2. Corsi per certificazioni specialistiche: Si sviluppano in: – applicazione degli apparecchi acustici - coloro che vendono gli apparecchi, vengono formati attraverso un corso professionale per l’adattamento e la manutenzione degli apparecchi stessi. Dal 2008, oltre 1.000 consulenti di apparecchi acustici hanno beneficiato di questo programma. – Audiologia pediatrica - è stata istituita nel 2009. I professionisti impiegati nei centri nazionali di riabilitazione, ricevono questo tipo di formazione avanzata. Ad oggi, sono stati formati oltre 500 audiologi pediatrici. 3. Programmi di formazione continua: sono stati avviati nel 2012 per aggiornare le competenze di coloro che già lavorano nei centri di riabilitazione. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 177 Questi programmi sono intrapresi in collaborazione con le principali università mondiali e ogni anno ne beneficiano quasi 200 professionisti. E queste misure hanno notevolmente rafforzato la capacità della Cina di fornire servizi EHC, tra cui l’attuazione di un programma di screening neonatale e di intervento precoce a livello nazionale. CASE STUDY II Gli infermieri forniscono cure per l’orecchio a South Tarawa, Kiribati* Dal 2013, sull’isola di South Tarawa, a Kiribati, è attivo un servizio di salute dell’orecchio dedicato ai bambini e gestito da infermieri. Basato su “specialisti in otorinolaringoiatria” e applicato con successo in Nuova Zelanda sind dagli anni ȅ70, questo approccio ha portato i servizi EHC a Kiribati, dove tantissimi bambini hanno perforazioni accompagnate da perdita dell’udito. È ben noto che questa patologia dell’orecchio, pur essendo facilmente prevenibile, può, se non trattata, portare a gravi complicazioni mediche, che non possono essere facilmente gestite. Per questo agli infermieri viene insegnato l’esame dell’orecchio, l’uso appropriato dell’otoscopio, la gestione delle comuni malattie dell’orecchio, come effettuare lo screening dell’udito e la timpanometria. Inizialmente gli infermieri hanno lavorato nelle tre grandi scuole elementari dell’isola, analizzando oltre 1.500 studenti. Nel 2018, il lavoro è stato ampliato per raggiungere anche una clinica specialistica dell’orecchio, aperta presso l’ospedale di Tungaru. La clinica è stata istituita in risposta a dati del dipartimento di emergenza, che mostravano che quasi il 25% delle persone aveva riscontrato problemi all’orecchio. Oggi in questa clinica lavorano infermieri specializzati nella cura dell’orecchio, che forniscono servizi di assistenza sanitaria per tre giorni alla settimana. Spesso vengono supportati anche da un team di specialisti che arriva in visita sull’isola. Negli ultimi sei anni, grazie alle cure regolari fornite dagli infermieri, il team di specialisti ha notato una drastica diminuzione dei problemi cronici dell’orecchio tra gli studenti sottoposti alle cure. Ora dunque si prevede di espandere questo servizio per coprire tutte le scuole primarie di Tarawa Sud. L’esperienza di Kiribati spiega bene come un servizio EHC fornito da infermieri dell’orecchio appositamente formati, sia in grado di fornire cure dell’udito a basso costo e facilmente accessibili a tutti. *Fonte: contribuito di Ms. Kahn Bury, infermiera formatrice, Nuova Zelanda WORLD REPORT ON HEARING178 3.4.3 TECNOLOGIE UDITIVE Il termine “tecnologie dell’udito” comprende dispositivi come apparecchi acustici e impianti cocleari. L’OMS stima che nei paesi a basso e medio reddito, meno del 15% di coloro che ne hanno realmente bisogno, può avervi accesso (115). Lo studio Global Burden of Disease study e l’OMS stimano che nel mondo oltre 400 milioni di persone beneficerebbero dell’uso di apparecchi acustici (105); di questi, meno di 68 milioni ne usano effettivamente uno, con un gap di copertura esistente dell’83% (116). Questo divario è più basso nella Regione Europea dell’OMS (77%) e più alto nella Regione Africana dell’OMS (90%) (Figura 3.9a). Se da una parte i paesi a basso reddito fanno i conti con un altissimo divario di servizio (91%) per quanto riguarda l’uso di apparecchi acustici, dall’altra anche nei paesi ad alto reddito quasi tre quarti della popolazione che avrebbe bisogno dell’apparecchio, in reltà non ne fa uso (Figura 3.9b). Figura 3.9a Numeri e percentuali di persone che hanno bisogno, ma non usano apparecchi acustici tra le regioni dell’OMS Figure 3.9a Numbers and percentages of people in need but not using hearing aids/ gap in hearing aid use Pacifico Occidentale Sud-Est Asiatico Mediterraneo Orientale EuropaAfricaAmerica 49.5 83% milioni 333.5 83% milioni 33 90% milioni 42.2 77% milioni 17.8 84% milioni 86.5 84% milioni 102.9 81% milioni Milioni di persone che non usano appareccKi acuࢌici (95% UI) % di persone che hanno bisogno e che non usano appareccKi acuࢌici Nota: Questa illustrazione rappresenta le regioni dell’OMS, non i confini dei paesi. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 179 Figura 3.9b Numero e percentuale di persone che hanno bisogno, ma non usano gli apparecchi acustici nei gruppi di reddito della Banca Mondiale Fig 3.9b Numbers and percentages of people in need but not using hearing aids across World Bank income groups 0 20 40 60 80 100 120 140 160 180 Numero di persone in milioni Reddito alto 130.2 84.5% Reddito medio-basso 120 85.5% Reddito basso 61.9 74.5% Reddito medio-alto 19.8 91% Questa analisi, basata sui dati GBD, mostra inoltre che l’uso di un apparecchio acustico riduce sostanzialmente la disabilità associata alla perdita dell’udito (in termini di YLD - anni vissuti con disabilità), specialmente in coloro con una perdita uditiva moderatamente grave o grave. In generale, l’ipoacusia riguarda 29 milioni di YLD - anni vissuti con disabilità, a causa del mancato utilizzo dell’apparecchio. L’attuale copertura (17%) ha portato questo valore a 25,3 milioni di YLD - cioè una riduzione del 12,6% (13,9-11,5%) della morbilità. Si stima che se ogni persona che ha bisogno di un apparecchio acustico ne usasse uno, il peso della malattia si ridurrebbe da 25 milioni a 10,3 milioni di YLD - con una possibile riduzione addirittura del 59% (115). L’accesso limitato agli apparecchi acustici è un riflesso delle difficoltà generali che limitano l’accesso ai servizi EHC. Nel contesto degli apparecchi acustici, questi problemi possono essere riassunti come: (i) costo elevato degli apparecchi acustici; (ii) mancanza di risorse umane e servizi per fornire, adattare, mantenere e sostenere l’uso dell’apparecchio; (iii) bassa consapevolezza e stigma associati all’ipoacusia. Anche per quanto riguarda gli impianti cocleari, molte ricerche spiegano le cause del loro uso limitato (41). Così come per gli apparecchi acustici, infatti, anche per gli impianti cocleari si registra una limitata accessibilità, dovuta ai costi elevati, alla carenza di personale qualificato e di servizi di riabilitazione. Questo accade nei paesi a medio e basso reddito, ma anche in quelli ad alto reddito, troviamo notevoli differenze di utilizzo (117, 118). Se ogni persona che ha bisogno un apparecchio acustico ne usasse uno, i YLDs (anni di disabilità) sarebbero ridotti del 59%. WORLD REPORT ON HEARING180 CASE STUDY I “C’è una notevole differenza nell’accesso all’impianto cocleare tra i bambini. Uno studio effettuato in cinque diversi paesi, ha stimato che in un’area delle Fiandre, in Belgio, i tassi di utilizzo pediatrico dell’impianto cocleare sia del 93% tra i bambini che ne hanno bisogno. Il Regno Unito e alcuni paesi europei raggiungono anche più del 90%. Negli Stati Uniti, circa il 50% dei bambini che potrebbero beneficiarne ricevono impianti cocleari. Questo non prende in considerazione l’utilizzo da parte degli adulti, che potrebbe essere ancora più basso” (117). Un personale sanitario adeguatamente formato è la chiave per fornire e applicare le tecnologie uditive più avanzate (vedi 4.2 della sezione 4). Tuttavia, bassi livelli di consapevolezza limitano l’utilizzo dei servizi di valutazione e riabilitazione, anche nei contesti in cui questi sono disponibili, come evidenziato dal bassissimo uso al livello mondiale (77-90%) degli apparecchi acustici. E anche quando si ricorra all’uso dell’apparecchio, aspettative irrealistiche su questi dispositivi influenzano il loro uso continuo e mettono in dubbio il loro beneficio. La questione dei costi è fondamentale per l’uso degli apparecchi e degli impianti cocleari. I costi variano enormemente in tutto il mondo e anche all’interno di uno stesso paese, a seconda delle specifiche e delle caratteristiche del dispositivo. Ad esempio, negli Stati Uniti il prezzo degli apparecchi acustici può variare dai 500 ai 3.000 dollari (119); il costo medio di un apparecchio acustico bilaterali è di 4.700 dollari (71). Allo stesso tempo, in molti paesi come l’India, ad esempio, si trovano dispositivi a bassissimo costo: qui infatti un dispositivo digitale può essere venduto a soli 50 dollari (120). L’uso dei dispositivi comporta spesso spese vive, anche nelle economie più sviluppate, dove sono facilmente disponibili (71). I costi infatti riguardano non solo il dispositivo, ma anche le “chiocciole” e le batterie, così come anche i servizi di adattamento e manutenzione. Uno studio condotto in Nigeria ha mostrato che i costi annuali per le sole batterie degli apparecchi acustici potrebbero superare il reddito annuo totale di una famiglia media africana di agricoltori (121). Il problema dei costi è aggravato dalle alte tasse di importazione e dagli oneri imposti sugli apparecchi medici, oltre che da un accesso limitato all’assicurazione sanitaria (120). La situazione è ulteriormente complicata dalla scarsa concorrenza in questo settore: un piccolo numero di produttori produce il 98% dei dispositivi venduti a livello globale (122) e di solito le produzioni si concentrano sui prodotti destinati alle economie più sviluppate (120). La disponibilità di una tecnologia accessibile e di alta qualità è essenziale per l’assistenza uditiva. Tuttavia, la disponibilità e l’accessibilità non sono, da sole, sufficienti e devono essere integrate con approcci innovativi e modelli di fornitura del servizio che possano garantire un accesso equo a questi dispositivi e ai relativi servizi, cruciali per il loro utilizzo. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 181 LE DIFFICOLTÀ POSSONO ESSERE SUPERATE Per fronteggiare le lacune nell’accesso e nell’uso della tecnologia acustica, gli apparecchi e gli impianti cocleari dovrebbero essere inclusi come prodotti di assistenza primaria, disponibili come servizi messi a disposizione dallo stato e si dovrebbe promuovere il loro uso attraverso: • Politiche che assicurino un facile accesso a tecnologie e servizi di alta qualità, economiche, sicure (55, 123) in linea con le raccomandazioni fatte nella risoluzione WHA71.8 sul miglioramento dell’accesso alle tecnologie assistive (124). Questa risoluzione, insieme all’elenco degli ausili prioritari dell’OMS,24 fornisce indicazioni concrete sull’inclusione delle tecnologie uditive e dei servizi correlati, all’interno dei sistemi sanitari nazionali. • L’adozione di prodotti accessibili e di alta qualità conformi alle raccomandazioni dell’OMS, come quelle stabilite nel profilo dell’OMS “Preferred profile for hearing aid technology suitable for low -and middle- income countries” (Profilo prescelto per la tecnologia degli apparecchi acustici adatta ai paesi a basso e medio reddito”) (125). • Gli sviluppi più recenti e rivoluzionari della tecnologia acustica (come spiegato nella Sezione 2) quando si stabiliscono tecnologie acustiche più adatte ai bisogni di ciascun un paese. • L’aumento di servizi di fornitura efficaci che non si affidino esclusivamente ai professionisti altamente qualificati, un esempio è la tele-audiologia (126, 127); l’uso di apparecchi acustici auto-adattati o regolabili (106, 120); servizi diretti al cliente (128); l’uso di piattaforme di Salute digitale e Mobile Health (54, 129) e la formazione di manodopera locale (55). • Questi servizi dovrebbero essere adattati in base ai diversi sistemi sanitari di ciascun paese. • Aumentare la consapevolezza sull’ipoacusia e ridurre lo stigma associato attraverso: – campagne di comunicazione che forniscano informazioni accurate e accessibili; – il rafforzamento delle associazioni di persone ipoacusiche; • Ridurre i costi, adottando misure come l’eliminazione delle tasse e dei dazi sulle importazioni; l’acquisto in comune; l’uso di batterie a energia solare e di materiali di provenienza locale (120); nuove modalità per i rimborsi (55). • Ricerca e innovazione nel design dell’apparecchio e degli impianti cocleari, per soddisfare le richieste dei diversi paesi, così come lo sviluppo di tecnologie acustiche personalizzate per l’utente, che riflettono le diverse esigenze di ciascuno. • Partecipazione dei produttori agli sforzi per migliorare l’accesso alle tecnologie acustiche, aumentando le risorse per la formazione e implementando il numero degli operatori sanitari. • I produttori hanno un ruolo importante anche nell’assicurare che le pratiche fornite possano garantire l’accesso migliore a tutti i settori della società. 24 https://www.who.int/phi/implementation/assistive_technology/global_survey-apl/en/ WORLD REPORT ON HEARING182 CASE STUDY I Modelli di fornitura del servizio e regolamenti efficaci possono migliorare l’accesso agli apparecchi acustici Gli screening attivi di comunità e l’adattamento degli apparecchi acustici, migliorano la fruibilità di queste tecnologie da parte di tutti e portano benefici in termini di costi e di salute (130). Uno studio condotto in India ha confrontato l’efficacia dello screening attivo, con successiva applicazione di apparecchi acustici, con lo screening passivo e l’adattamento a livello terziario. Lo studio ha stimato i costi totali e gli effetti di questi due approcci (cioè l’approccio di screening attivo, rispetto all’applicazione di apparecchi acustici a coloro che si sono presentati presso una struttura di livello terziario). Gli effetti sulla salute sono stati calcolati in base alla conformità con l’apparecchio acustico, e ai DALY evitati (anni di vita persi a causa di una disabilità). È evidente che se da una parte entrambi i modelli erano economicamente efficaci, dall’altra, lo screening attivo seguito dalla fornitura di apparecchi acustici era l’opzione leggermente più costosa. Tuttavia, questa piccola differenza viene compensata dai vantaggi in termini di maggiore copertura dei servizi di assistenza acustica e dai maggiori benefici per la salute, come determinato dal numero significativamente più alto di DALY evitati attraverso lo screening attivo. CASE STUDY II La fornitura di apparecchi acustici da banco può migliorare accessibilità e convenienza (128) Negli ultimi anni, le principali agenzie sanitarie degli Stati Uniti hanno dato priorità alla fornitura di apparecchi acustici da banco (OTC) per migliorarne accessibilità e convenienza. Uno studio randomizzato ha confrontato la fornitura di servizi tramite le “migliori pratiche in audiologia” (AB), con il modello degli apparecchi acustici da banco e con un placebo. Entrambi i modelli si sono rivelati efficaci nel migliorare l’udito negli adulti più anziani. Il modello della distribuzione degli apparecchi da banco aveva solo marginalmente risultati più bassi rispetto al modello migliore di pratica audiologica. E questa leggera differenza è stata compensata dal fatto che il modello OTC aumentava l’accessibilità e la convenienza degli apparecchi acustici, soprattutto tra gli adulti più anziani. E dunque è stato considerato come un approccio efficace per un’azione futura. CASE STUDY III CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 183 Le politiche governative migliorano l’accesso alla tecnologia acustica: un esempio dalla Federazione Russa* Nel 1991, il governo della Federazione Russa ha introdotto un programma di impianti cocleari in tutto il paese, che integrava il programma di apparecchi acustici. Di conseguenza, i bambini nati audiolesi, ora sono dotati di apparecchi acustici o impianti cocleari a seconda delle necessità e vengono garantiti loro anche servizi di riabilitazione. Ogni anno, in tutto il paese oltre 1.100 bambini si sottopongono all’impianto cocleare, in sei diversi centri federali, finanziati dal governo. Oggi inoltre persone di tutte le età possono accedere alle cure uditive grazie a test dell’udito, adattamento e programmazione degli apparecchi acustici nei centri audiologici regionali. Ogni anno, 120.000 apparecchi acustici sono forniti e pagati attraverso il Fondo federale dell’Assicurazione sociale. Queste misure hanno contribuito notevolmente a garantire che le persone di tutte le età abbiano accesso alle cure dell’udito di cui hanno bisogno. *Fonte: informazioni fornite dal dottor George Tavartkiladze del Centro nazionale di ricerca per l’audiologia e la riabilitazione, Mosca, Federazione Russa; https://www.rosminzdrav.ru/ministry/61/22/stranitsa-979/statisticheskie-i-informatsionnye-materialy/ statisticheskie-materialy; https://www.rosminzdrav.ru/open/kollegiya-ministerstva-zdravoohraneniya-rossiyskoy-federatsii/ materialy-kollegii-ministerstvazdravoohraneniya-rossiyskoy-federatsii CASE STUDY IV Nel Regno Unito, l’acquisto di gruppo rende gli apparecchi acustici più accessibili* Dati i vantaggi nell’affrontare la perdita dell’udito a tutte le età, il National Health Service (NHS) fornisce ai punti di distribuzione, apparecchi acustici gratuiti (e impianti cocleari) ai bambini e agli adulti che ne hanno bisogno. Si stima che ogni anno 750.000 apparecchi acustici vengano applicati dall’NHS. Per essere in grado di fornire dispositivi di alta qualità in modo accessibile, il governo ha adottato misure sistematiche che assicurano la qualità e riducono i costi. Queste includono: • la definizione delle tecniche specifiche minime per gli apparecchi acustici; • l’esame di tutti gli apparecchi acustici e dei produttori, prima della loro accettazione da parte del Sistema nazionale; • l’analisi delle diverse offerte da parte dei produttori per garantire la migliore tecnologia possibile al prezzo più basso; • stabilire una catena di fornitura a livello nazionale. • Il risultato di queste politiche è che oggi gli apparecchi acustici sono disponibili ad un prezzo altamente competitivo. Questo approccio ha ridotto le implicazioni finanziarie della fornitura di apparecchi per il governo del Regno Unito e ha portato benefici alle persone ipoacusiche. *Fonte: informazioni fornite dall’NHS Audiology Supplies Group (ASG) in collaborazione con la British Academy of Audiology (BAA). WORLD REPORT ON HEARING184 3.4.4 INFORMAZIONI SANITARIE: DATI E INDICATORI L’accesso alle cure per l’udito non solo è molto diverso da paese a paese, ma è anche scarsamente documentato a livello nazionale (131). La maggior parte dei dati sull’udito non sono riportati all’interno dei sistemi informativi sanitari nazionali, né sono ben descritte in letteratura scientifica. I dati dell’indagine riportati dall’OMS nel 2014 (100) mostrano anche una mancanza di studi epidemiologici e di informazioni riguardanti le cause della perdita uditiva. Anche quando i dati sono disponibili, il loro utilizzo è limitato a causa di differenze nelle definizioni e nei metodi di indagine utilizzati. Dal momento che le informazioni affidabili costituiscono la base per la definizione di politiche basate sull’evidenza e sono il mezzo per misurare i progressi, la loro mancanza rappresenta un problema significativo. L’assenza di informazioni sulla cura dell’orecchio e dell’udito nei sistemi sanitari nazionali ci indica la scarsa priorità che questo fenomeno rappresenta all’interno dei sistemi sanitari. La mancanza di dati epidemiologici rende difficile per i paesi comprendere la necessità e l’importanza dell’assistenza all’udito, e quindi di includerla nei piani sanitari. Succede dunque che gli indicatori per la perdita uditiva non vengano inclusi nei protocolli di sorveglianza e dunque rimangano fuori dai sistemi informativi sanitari, alimentando così un ciclo negativo. LE DIFFICOLTÀ POSSONO ESSERE SUPERATE • Dati affidabili sulla cura dell’orecchio e dell’udito possono essere raccolti attraverso l’uso di strumenti standardizzati, come il manuale dell’indagine OMS sull’orecchio e l’udito (132) e supportati da agenzie di ricerca. Dati utili possono essere raccolti con relativa facilità e a basso costo, seguendo approcci come il protocollo di indagine sulla valutazione rapida della perdita uditiva (RAHL) (vedi Box 3.4). • Per stabilire un processo decisionale basato sull’evidenza, dovrebbero essere inclusi nel sistema informativo sanitario di ciascun paese, gli indicatori appropriati per orecchio e udito, per fornire una visione “sintetica” delle condizioni e delle tendenze esistenti (133). CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 185 Box 3.4 Sforzi dell’OMS per standardizzare la raccolta dei dati I seguenti strumenti dell’OMS possono essere usati a livello di sistema sanitario sia per la ricerca, che per affrontare le sostanziali lacune di dati e di informazioni: Indicatori per il monitoraggio della fornitura di servizi EHC (134): questo set di 14 indicatori di base e 21 indicatori supplementari, supporta la raccolta di dati coer- enti a livello di sistema sanitario e fornisce una misura standardizzata per ottenere una visione d’insieme dei progressi compiuti dai paesi nel campo dell’assistenza all’orecchio e all’udito. Manuale di indagine su orecchio e udito (132): questo manuale dell’OMS fornisce una guida per intraprendere uno studio sulla perdita uditiva, basato su tutta la popolazione. L’uso di una metodologia standardizzata di raccolta dati, ne facilita l’uso per poi stilare stime regionali e globali. Il manuale include un protocollo di indagine RAHL che fornisce un metodo facile e poco costoso per valutare la per- dita uditiva. 3.4.5 GOVERNANCE E FINANZIAMENTI È importante che i governi assumano la leadership nel definire la direzione strategica e politica per affrontare la perdita uditiva in modo integrato, ciascuno all’interno del proprio sistema sanitario, così come per qualsiasi altra condizione di salute. La mancanza di governance nel campo delle cure uditive è evidenziata dall’assenza di strategie nazionali o di comitati nazionali che si occupino dell’argomento (100). E questo nonostante diversi Stati membri dell’OMS abbiano dato il via ad azioni mirate, specialmente dopo l’adozione nel 2017 della risoluzione dell’Assemblea Mondiale della Sanità sulla prevenzione della sordità e della perdita di udito (1). La mancanza di governance è dovuta a una scarsa attenzione politica, a una bassa priorità associata all’ipoacusia, all’interno dei problemi di salute pubblica e a una carenza di risorse finanziarie, dovuta ad altre priorità sanitarie concorrenti (100). Nonostante l’alto impatto dell’ipoacusia, la necessità di interventi mirati e l’azione globale dell’OMS, in tutto il mondo persiste ancora il problema delle limitate risorse finanziarie per affrontare la perdita dell’udito, a livello globale e nazionale (131). WORLD REPORT ON HEARING186 LE DIFFICOLTÀ POSSONO ESSERE SUPERATE • La comunicazione e il sostegno su misura possono essere motori efficaci per la formulazione delle politiche (43, 135). Tale azione di sostegno deve essere intrapresa a livello globale, regionale e nazionale e basarsi su fatti e cifre supportati da prove (136). • Superare la carenza di risorse economiche e la scarsità dell’impegno politico richiede un approccio su più fronti, incentrato sul: (i) definire una visione globale comune e reperire risorse internazionali per sostenere la cura dell’udito (131); (ii) integrare i servizi EHC nei servizi di assistenza sanitaria lungo tutto l’arco della vita (55); (iii) adottare soluzioni innovative e tecnologie che possano ridurre i costi (55, 131). © M ou na S ak ly , M in is tr y of H ea lth , T un is ia 6viluppo di una strategia per la cura dellȆoreccKio e dellȆudito in 7unisia CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 187 CASE STUDY I L’OMS accelera le azioni globali per la cura dell’udito attraverso programmi di sensibilizzazione Fin dal 2011, l’OMS ha promosso la Giornata Mondiale dell’Udito (137) come evento annuale di sensibilizzazione che sottolinei l’importanza e il bisogno di cure uditive. Incentrata su un tema globale ogni anno diverso, la Giornata Mondiale dell’Udito ha raccolto con successo gli sforzi di diversi stakeholder in tutti gli stati. In tutto il mondo vengono organizzati vari eventi, nel tentativo di creare consapevolezza sul tema, nella popolazione e soprattutto tra i responsabili politici. La Giornata Mondiale dell’Udito è anche l’occasione per organizzare gli screening e fornire servizi a gruppi specifici all’interno della comunità. Nel 2020, per la Giornata, sono stati organizzati circa 600 eventi in 107 diversi Paesi, facendo registrare una rilevanza crescente di questo settore all’interno dei piani di salute pubblica. Nel 2018, in continuità con questi sforzi di sensibilizzazione e per rafforzarli attraverso un’azione collaborativa tra più parti interessate, l’OMS ha lanciato il World Hearing Forum (WHF) (138), una sorta di alleanza globale mirata alla sensibilizzazione e sviluppata in collaborazione con tutti i settori impegnati nella cura dell’orecchio e dell’udito. Il WHF sostiene la priorità della cura dell’udito e l’implementazione della risoluzione WHA70.13 dell’Assemblea Mondiale della Sanità per prevenzione della sordità e ipoacusia. Questa alleanza rappresenta una visione globale per affrontare i problemi di ipoacusia. Riunendo insieme tutte le parti interessate in un unico fronte, il Forum spera di ottenere un sostegno forte e coerente, che si traduca poi in una maggiore attenzione alle cure di udito, da parte delle agenzie di salute pubblica e dei governi. CASE STUDY II Il Pakistan dà la priorità alla cura dell’orecchio e dell’udito, in risposta alla risoluzione della World Health Assembly WHA70.13* Nel 2017, la risoluzione WHA70.13 dell’Assemblea Mondiale della Sanità sulla prevenzione della sordità e della perdita di udito, ha esortato gli Stati membri a preparare piani nazionali per la prevenzione e il controllo delle principali cause di perdita dell’udito e per la sua individuazione e gestione precoce all’interno dei sistemi sanitari nazionali. Di tutta risposta, il governo del Pakistan ha avviato azioni e incluso la fornitura gratuita di apparecchi acustici a tutti i suoi cittadini, prevedendo anche un numero limitato di impianti cocleari destinati ai bambini sordi. Attualmente sono in corso azioni per lanciare il più grande programma nazionale di screening neonatale, la cui attuazione assicurerà l’identificazione precoce della perdita uditiva, con l’obiettivo di assicurare una pronta riabilitazione, in modo che tutti i cittadini, compresi quelli ipoacusici, abbiano l’opportunità di esprimere il ciascuno il proprio massimo potenziale. *Fonte: racconto fornito dalla dott.ssa Maryam Mallick, consulente tecnico, OMS Pakistan WORLD REPORT ON HEARING188 CASE STUDY III Il Kenya risponde all’appello delle risoluzioni dell’AMS per la cura dell’orecchio e dell’udito Rispondendo all’appello delle risoluzioni dell’Assemblea Mondiale della Sanità sulla perdita dell’udito, adottate nel 1995 e nel 2017, nel 2016 il governo del Kenya ha lanciato una strategia nazionale EHC. Il primo passo è stato quello di istituire un gruppo di lavoro tecnico nazionale EHC e condurre un’analisi dettagliata della situazione, utilizzando alcuni strumenti di analisi dell’OMS. Sulla base di questa analisi, è stato delineato un piano completo per una nazione sana e produttiva, libera da perdite uditive prevenibili. Dal lancio del piano strategico, sono stati compiuti diversi passi concreti per la sua implementazione nelle diverse regioni del Kenya: • il governo nazionale ha riconosciuto ufficialmente gli specialisti in audioprotesi e i logopedisti, fornendo un percorso per questi professionisti all’interno del servizio pubblico. • La fornitura di apparecchi acustici è stata ora inclusa tra i benefici del fondo assicurativo nazionale. • Vengono effettuati sforzi continui per migliorare le infrastrutture e la disponibilità delle risorse umane destinate alla cura dell’orecchio e dell’udito nelle strutture pubbliche e private. Inoltre, il paese è diventato anche punto di riferimento per altri stati nella regione dell’Africa orientale e centrale, giocando un ruolo fondamentale nella formazione della forza lavoro EHC e nello sviluppo di strategie nazionali, che si sviluppano in altri sette Stati membri dell’OMS confinanti. CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 189 CASE STUDY IV Il settore non governativo gioca un ruolo fondamentale nel migliorare l’accesso alle cure dell’orecchio e dell’udito* Le organizzazioni non governative giocano un ruolo significativo nel sostenere i governi nella pianificazione e nella fornitura di cure dell’udito. All Ears Cambodia (AEC) è un esempio di organizzazione non governativa locale che lavora da diciassette anni in partnership con il governo, per fornire servizi specialistici per l’orecchio e l’udito a oltre 28.000 persone che ne hanno bisogno. I servizi si concentrano principalmente sull’assistenza sanitaria primaria dell’orecchio sul trattamento delle infezioni dell’orecchio nei bambini sui test dell’udito e sull’adattamento degli apparecchi acustici. Nove ospedali esterni portano i servizi di cura dell’orecchio all’interno di villaggi remoti, sparsi nel paese. L’organizzazione sostiene anche la divulgazione di materiali e guide tecniche e porta avanti programmi educativi nella comunità e nelle scuole locali, per prevenire l’ipoacusia e cambiare gli atteggiamenti esistenti. * Fonte: racconto fornito da Glyn Vaughan di All Ears Cambodia CASE STUDY V L’attività di sostegno nella regione africana dell’OMS guida l’elaborazione delle politiche in Madagascar* Nel 2018, per promuovere le cure dell’orecchio e dell’udito in risposta alla risoluzione WHA70.13, 11 paesi africani si sono riuniti con l’OMS e con i principali attori non statali del settore, per formare il “Forum regionale EHC per l’Africa centrale, orientale e meridionale”. Il governo del Madagascar faceva parte del forum e, sulla base dei risultati, ha istituito un Ear and Hearing Care Committee, in collaborazione con l’ONG internazionale CBM.** Nel 2019, sotto la guida del Ministero della Salute (MoH) del Madagascar, è stata condotta un’analisi della situazione, insieme a una pianificazione strategica, che utilizzava strumenti e linee guida dell’OMS. Oggi il governo del Madagascar sta collaborando con più parti per sviluppare una strategia nazionale per la cura dell’orecchio, all’interno del servizio di salute dell’Eye, Hearing and Oro-Dental Health. Come primo passo di questo nuovo percorso, il 3 marzo 2020 il MoH ha condotto una campagna di sensibilizzazione per la cura dell’orecchio e dell’udito con attività a livello nazionale incentrate sull’ipoacusia. 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Available at: https://www. who.int/activities/celebrating--world--hearing--day , accessed November 2020. 138. World Health Organization. Promoting the World Hearing Forum. Available at: https:// www.who.int/activities/promoting-world-hearing-forum , accessed November 2020. WORLD REPORT ON HEARING198 Le azioni di collaborazione possono trasformare i sistemi sanitari* *Contributo di Karen Mojica di Mayflower Medical Outreach e Joaquin Escoto del Ministero della Salute, Nicaragua © O tt o M ej ía , N ic ar ag ua CAPITOLO 3 LE SFIDE RIVOLTE ALLA CURA DELL’UDITO 199 Quando abbiamo iniziato le discussioni politiche sull’orecchio e sull’udito in Nicaragua, solo due ospedali della capitale fornivano servizi per l’identificazione e la gestione dei problemi uditivi. Gli interventi chirurgici per trattare le comuni malattie dell’orecchio erano eseguiti raramente. Le persone di solito erano costrette a viaggiare per molti chilometri e ad aspettare lunghi periodi di tempo solo per ottenere una diagnosi di otite media. Con il lancio del programma nazionale per le persone che vivono con disabilità “Todos con Voz”, il Ministero della Salute, insieme all’OMS, alle ONG internazionali e ai gruppi professionali locali, nel 2012 ha sviluppato una strategia globale per integrare le cure uditive. Immediatamente sono stati formati in EHC 59 tra medici e infermieri, che a loro volta hanno formato 1.300 operatori sanitari, infermieri e medici per fornire servizi a livello di comunità. Contemporaneamente si sono create infrastrutture per tutti i livelli di assistenza. Nel corso degli anni, i servizi di base per l’orecchio e l’udito sono stati istituiti in 15 dei 19 SILAIS, con cliniche gestite da specialisti ENT e tecnici audiometisti. , servizi chirurgici sono stati rafforzati a livello secondario e terziario. Negli ultimi sei anni, sono stati effettuati pi» di 18.000 test audiologici e oltre 13.800 persone hanno beneficiato del programma. 1el 201, ª stato lanciato il primo programma nazionale di screening neonatale. E quasi mille bambini stanno già ricevendo la riabilitazione attraverso questo programma. Abbiamo fatto molta strada, ma molto c’ª ancora da fare. Crediamo che siano gli sforzi congiunti di tutte le parti interessate che ci hanno permesso di garantire i servizi di cura dell’orecchio e dell’udito, di cui il paese aveva così tanto bisogno. Joaquin Escoto, responsabile del programma, Todos con Voz, Ministero della Salute, Nicaragua WORLD REPORT ON HEARING200 CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 201 CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO La missione dell’OMS nel campo dell’orecchio e dell’udito: “Rendere le cure accessibili a tutti. 4.1 PANORAMICA O La copertura sanitaria universale (UHC) è la chiave per raggiungere l’obiettivo 3 degli Obiettivi di Sviluppo Sostenibile (SDG3) entro il 2030. L’SDG3 richiede che tutte le persone, comprese quelle affette da ipoacusia e malattie dell’orecchio, abbiano accesso a servizi di qualità, senza che questi gravino sulle finanze dei pazienti. O L’accesso ai servizi uditivi è riassunto nel termine “Orecchio e udito”, che si riferisce ad una vasta gamma di servizi per salute promozione, prevenzione, identificazione, gestione e riabilitazione, attraverso i sistemi sanitari nazionali. Questi servizi affrontano le condizioni dell’orecchio e dell’udito in tutte le fasi della vita. O L’assistenza all’orecchio e all’udito va oltre i sistemi sanitari e comprende anche un programma di istruzione e di comunicazione, Questo si ottiene attraverso un’azione collaborativa multisettoriale, in linea con i principi dell’assistenza integrata dell’orecchio e dell’udito incentrato sulle persone (IPC-EHC). WORLD REPORT ON HEARING202 O Gli interventi chiave della salute pubblica per la fornitura di EHC nel corso della vita sono riassunti nell’acronimo “H.E.A.R.I.N.G.”: Hearing screening and intervention; Ear disease prevention and management; Access to technologies; Rehabilitation services; Improved communication; Noise reduction; and Greater community engagement. (Screening dell’udito e intervento; prevenzione e gestione delle malattie dell’orecchio; accesso alle tecnologie; Servizi di riabilitazione; Miglioramento della comunicazione; Riduzione del rumore; e Maggiore coinvolgimento della comunità). O L’implementazione degli interventi di H.E.A.R.I.N.G. può portare benefici significativi ai paesi. Ogni anno, 1,33 dollari pro capite di investimenti aggiuntivi sono necessari al sistema sanitario per aumentare l’identificazione, il trattamento e la riabilitazione dei problemi all’orecchio e all’udito. In un periodo di 10 anni, questo promette un ritorno (o guadagno) di quasi 16 dollari per ogni dollaro investito. O Su un periodo di 10 anni, di questo investimento potranno beneficiare quasi 1,5 miliardi di persone in tutto il mondo, si potranno evitare 130 milioni di DALYs e creare benefici alla produttività per oltre 2,4 trilioni di dollari. O Ogni paese deve determinare quali interventi H.E.A.R.I.N.G. si adattano meglio alle proprie esigenze attraverso un’analisi a priori dei dati. L’implementazione deve avvenire attraverso un approccio IPC-EHC e assicurare che le persone ricevano un continuum di servizi EHC lungo tutto l’arco della vita, aiutati dal rafforzamento del sistema sanitario. O La visione di IPC-EHC comprende servizi che danno potere agli individui e alle comunità; rafforzare la governance e la responsabilità; orientare il modello di cura dando la priorità all’orecchio e all’udito; coordinare in maniera adeguata il reparto competente e i vari settori coinvolti. Operazioni queste importanti per ottimizzare il lavoro. O La fornitura di servizi IPC-EHC richiede un’operazione su tutti i livelli del sistema sanitario attraverso: – Leadership e governance, per assicurare un accesso equo ai servizi IPC su tutti i livelli di fornitura dei servizi sanitari attraverso: un orientamento politico ben pianificato; una collaborazione tra i settori interessati; i regolamenti e la loro applicazione; una supervisione generale. – Finanziamento sostenibile e protezione sociale, in modo che le persone possano accedere a servizi di qualità dell’EHC di qualità e tutelando il paziente soprattutto del punto di vista economico. – Una forza lavoro sanitaria competente, motivata e autorizzata, che è essenziale per l’effettiva fornitura dei servizi EHC. Date le attuali carenze nella forza lavoro dell’EHC, ciò richiede misure globali che includono: investire per aumentare i programmi di formazione per il personale sanitario EHC; la condivisione dei compiti attraverso la formazione di altri medici specialistici (non EHC); e istruire gli operatori sanitari per fornire servizi a tutti i livelli di cura. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 203 – Sistemi informativi sanitari solidi che sostengono l’IPC-EHC e aiutano a determinare i bisogni e le priorità della popolazione, identificando le lacune e analizzando i progressi. Questo richiede di definire obiettivi realistici e limitati nel tempo, affidandosi a strumenti di monitoraggio adeguati e predefiniti. – Accesso equo a prodotti e tecnologie mediche essenziali di qualità, sicurezza ed efficacia attraverso l’inclusione nelle liste governative di attrezzature diagnostiche, medicinali e chirurgiche legate all’EHC, attrezzature chirurgiche (per gli interventi all’orecchio), tecnologie per l’udito e vaccini rilevanti. O I governi e i partner dovrebbero anche concentrarsi su una ricerca pertinente e orientata all’impatto, che sostenga l’attuazione dell’IPC-EHC lungo tutto il corso della vita. Le aree identificate per la ricerca EHC sono elencate più avanti nella sezione 4. O La sezione 4 si basa ulteriormente sulla risoluzione dell’Assemblea Mondiale della Sanità del 201725 e stabilisce un obiettivo globale del 20% di aumento relativo della copertura dei servizi EHC da raggiungere entro il 2030. Gli indicatori per il monitoraggio delineano i progressi verso l’obiettivo globale. O La sezione 4 presenta delle raccomandazioni ai ministeri della sanità degli Stati membri dell’OMS, alle organizzazioni internazionali e alle parti interessate nel campo dell’orecchio e dell’udito, delineando le azioni necessarie per includere l’IPC-EHC nei sistemi sanitari nazionali, come passo verso l’adempimento del mandato dell’UHC. Mentre le sezioni 1-3 hanno esaminato i vari fattori che influiscono sull’udito di una persona durante il corso della vita, le soluzioni disponibili per prevenire e affrontare la perdita dell’udito e le sfide da affrontare per garantire un’assistenza accessibile all’orecchio e all’udito, la sezione 4 delinea la visione dell’assistenza all’orecchio e all’udito e il suo posto nel contesto dell’UHC. Introduce una serie di interventi chiave che sono essenziali per assicurare che le persone abbiano accesso a questo tipo di servizi, in linea con i principi dell’UHC. La fornitura di questi interventi può essere raggiunta solo attraverso sistemi sanitari che seguono un approccio integrato incentrato sulle persone. La sezione 4 delinea ulteriormente i fattori chiave all’interno e del sistema sanitario e formula raccomandazioni per le azioni future. 25 Vedi: https://apps.who.int/gb/ebwha/pdf_files/WHA70/A70_R13-en.pdf WORLD REPORT ON HEARING204 Copertura sanitaria universale: una questione etica e una scelta politica. Dr. Tedros Adhanom Ghebreyesus, direttore generale dell’OMS, 2017 4.2 INTERVENTI H.E.A.R.I.N.G. COME PARTE DELLA COPERTURA SANITARIA UNIVERSALE L’obiettivo di sviluppo sostenibile 3 (SDG3), da raggiungere entro il 2030 (2), mira a garantire vite sane e promuovere il benessere per tutti, a tutte le età. L’OMS stima che, al momento attuale, metà della popolazione mondiale non ha accesso all’assistenza sanitaria di cui ha bisogno e ha allineato il suo lavoro per rispondere alla sfida posta dall’SDG3. L’obiettivo principale (il 3.8) che si concentra sul raggiungimento dell’UHC per facilitare l’accesso a servizi sanitari di qualità, economici ed essenziali (1, 2). La copertura sanitaria universale sottolinea l’importanza dell’accesso sia a servizi sanitari di qualità, che all’informazione sanitaria come diritto umano di base; inoltre, è cruciale per consentire il raggiungimento di tutti gli altri obiettivi dell’SDG3. Dato il bisogno sostanziale di servizi per curare le malattie dell’orecchio e la perdita dell’udito, il mandato di questo obiettivo non può essere portato a termine senza includere questi servizi. Le tre dimensioni principali della copertura sanitaria universale, come illustrato nella Figura 4.1, sono: (3) 1. l’espansione dei servizi prioritari per includere altri servizi che non erano disponibili per la popolazione in precedenza; 2. l’espansione della copertura dei servizi per includere più persone, specialmente i gruppi a basso reddito, gruppi svantaggiati e popolazioni rurali; 3. la riduzione i costi per migliorare l’accesso ai servizi. Copertura sanitaria universale significa che tutte le persone ricevano i servizi sanitari di cui hanno bisogno senza eccesive spese. Include l’intero spettro di servizi sanitari essenziali e di qualità, dalla promozione della salute alla prevenzione, al trattamento, alla riabilitazione e alle cure palliative (1). CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 205 Figura 4.1 Le tre dimensioni della copertura sanitaria universale Figure 4.1 The three dimensions of universal health coverage Servizi: quali servizi sono coperti? Coࢌi diretti: proporzione dei coࢌi coperti Popolazione: chi è coperto? FONDI CORRENTI RAGGRUPPATI Eࢌendere ai non coperti Riduzione dei coࢌi condivisi e tasse Include altri servizi Mentre i paesi avanzano nel raggiungimento di queste tre dimensioni, è importante che la qualità e la sicurezza dei servizi siano sempre costanti. Per sostenere i paesi in questa operazione, l’OMS sta attualmente sviluppando un compendio online di interventi prioritari, insieme al One Health Tool (4), un software specializzato che può facilitare il processo decisionale secondo i bisogni e le priorità del paese (Box 4.1). Per promuovere un accesso equo ai servizi EHC lungo tutto il corso della vita, l’OMS propone una serie di interventi chiave che devono essere forniti dai sistemi sanitari nazionali. NOTA PER LARA: questo e’ un box Box 4.1 Elenco degli interventi prioritari UHC e lo strumento OneHealth (4) Ogni paese deve seguire il proprio percorso per raggiungere l’obiettivo dell’UHC e decidere quali servizi coprire e a quali azioni dare priorità, in base ai bisogni delle persone e alle risorse disponibili. Per facilitare le scelte che devono essere fatte dai paesi nel raggiungimento dell’UHC, l’OMS ha sviluppato un software speciale - il OneHealth Tool - e sta attualmente mettendo insieme un compendio online di interventi prioritari. Questo includerà una vasta gamma di interventi raccomandati dall’OMS e delineerà anche le loro implicazioni in termini di risorse. Il compendio sarà utile ai tavoli nazionali per individuare le priorità dei servizi da includere nei pacchetti di prestazioni sanitarie. Esso includerà anche gli interventi raccomandati basati sull’esperienza per affrontare i bisogni di coloro che sono a rischio o convivono con problemi all’orecchio e all’udito in modo equo anche con agevolazioni economiche. © S ta rk ey H ea rin g Fo un da tio n Gli anziani della comunità vengono sottoposti a controlli dell’udito WORLD REPORT ON HEARING206 Box 4.1 Elenco degli interventi prioritari UHC e lo strumento OneHealth (4) Ogni paese deve seguire il proprio percorso per raggiungere l’obiettivo dell’UHC e decidere quali servizi coprire e a quali azioni dare priorità, in base ai bisogni delle persone e alle risorse disponibili. Per facilitare le scelte che devono essere fatte dai paesi nel raggiungimento dell’UHC, l’OMS ha sviluppato un software speciale - il OneHealth Tool - e sta attualmente mettendo insieme un compendio online di interventi prioritari. Questo includerà una vasta gamma di interventi raccomandati dall’OMS e delineerà anche le loro implicazioni in termini di risorse. Il compendio sarà utile ai tavoli nazionali per individuare le priorità dei servizi da includere nei pacchetti di prestazioni sanitarie. Esso includerà anche gli interventi basati sull’esperienza per affrontare i bisogni di coloro che sono a rischio o convivono con problemi all’orecchio e all’udito in modo equo anche con agevolazioni economiche. Lo strumento OneHealth dell’OMS può essere usato dai paesi per informare la pianificazione strategica nazionale per la salute e stabilire i costi nei paesi a basso e medio reddito, aiutando gli addetti ai lavori a rispondere alle seguenti domande: • Quali risorse del sistema sanitario sono necessarie per implementare il piano sanitario strategico? • Quanto costerebbe il piano strategico per anno? • Qual è l’impatto sanitario stimato? • Come si confrontano i costi con la stima dei finanziamenti disponibili? 4.2.1 CURA DELL’ORECCHIO E DELL’UDITO ATTRAVERSO L’IMPLEMENTAZIONE DEL PACCHETTO “H.E.A.R.I.N.G.” Le cure dell’orecchio e dell’udito si riferiscono a una vasta gamma di servizi che affrontano il problema in tutte le fasi della vita, servizi forniti attraverso i sistemi sanitari nazionali, e che includono promozione della salute, prevenzione, identificazione, gestione e riabilitazione. La portata dell’assistenza all’orecchio e all’udito si estende oltre i sistemi sanitari, attraverso un processo di educazione e di comunicazione accessibili (per esempio attraverso l’apprendimento del linguaggio dei segni o l’accesso ai sottotitoli, ecc.) come ad altri tipi di supporto (es. sostegno sociale) necessario alle persone con ipoacusia e alle loro famiglie, fornito attraverso un’azione collaborativa multisettoriale, in linea con i principi dell’assistenza integrata incentrata sulle persone, delineata più avanti nella sezione 4. Il pacchetto proposto di interventi EHC che corrisponde all’acronimo “H.E.A.R.I.N.G.” include operazione che sono necessarie per una fornitura olistica di EHC attraverso un approccio integrato nel corso della vita. Queste devono essere considerate da un CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 207 paese o da un programma pubblico sanitario quando sviluppa le sue politiche di servizio sanitario lavorando per arrivare ad una copertura sanitaria universale. Come si riflette nella definizione di assistenza all’orecchio e all’udito, il pacchetto non si limita al sistema sanitario, ma include anche interventi che richiedono uno sforzo di collaborazione al di fuori del sistema formale di erogazione dei servizi sanitari. È anche importante notare che l’insieme di interventi H.E.A.R.I.N.G. non riflette alcuni di quelli menzionati nella Sezione 2, e che sono rilevanti per la prevenzione e la gestione. Esempi di azioni non menzionate qui, ma che sarebbero rilevanti per ciascun paese, includono l’immunizzazione contro la rosolia e la meningite; cure materne; nutrizione; prevenzione e monitoraggio dell’esposizione chimica sul posto di lavoro. L’insieme degli interventi H.E.A.R.I.N.G. non vuole essere esaustivo, ma piuttosto tende a riassumere gli interventi di salute pubblica che sono più efficaci per la fornitura integrata di EHC durante la vita. Lo scopo di questi interventi di salute pubblica è quello di indirizzare i paesi verso sforzi di prevenzione e migliorare la fornitura di servizi clinici a livello individuale e sociale. Questo pacchetto è il risultato di un processo basato sull’evidenza, intrapreso in una discussione con il gruppo di revisione dell’OMS, composto da stakeholder esterni e gruppi di esperti. Il procedimento è riassunto nella Figura 4.2; il focus e gli obiettivi principali degli interventi sono esposti nella Tabella 4.1. Figura 4.2 Pacchetto H.E.A.R.I.N.G. di interventi per l’orecchio e l’udito a Revisione interna dell’OMS Determine population needs and priorities Integrate EHC indicators into Health Information System Set targets, determine indicators Track progress through standardized tools Report results and impact (lenFare JlL LnterYentL neFessarL Ser aff rontare la perdita dell’udito nel corso della vita Revisione delle prove per gli interventi elencati; Discussione con il gruppo di revisione 5eYLsLone delle SroYe rLsSetto allȆeࢇ FaFLa e al raSSorto Fosto eࢇ FaFLa deJlL LnterYentL LdentLfi FatL stXdL sXl rLtorno dellȆLnYestLPento 52, intrapresi per valutare il ROI in diversi contesti economici Consultazioni di esperti e stakeholder (3) Ser fi nalL]]are la lLsta deJlL LnterYentL WORLD REPORT ON HEARING208 SCREENING DELL’UDITO E INTERVENTO Obiettivo: Garantire l’individuazione tempestiva e gli interventi sulla perdita dell’udito, nei soggetti più a rischio. Corso della vita: Le tappe fisse nel corso della vita sono: neonati e bambini; bambini in età prescolare e scolare; adulti a più alto rischio di perdita dell’udito (per esempio a causa dell’esposizione al rumore o sostanze chimiche ototossiche sul posto di lavoro o a coloro a cui vengono somministrati farmaci ototossici per altre malattie) e anziani. Cosa è incluso: programmi di screening dell’udito e di intervento precoce rivolti a: • neonati e infanti; • bambini in età pre e scolastica; • tutti coloro che sono a più alto rischio di perdita dell’udito, per esempio, a causa dell’esposizione al rumore o di sostanze chimiche ototossiche sul posto di lavoro, e a coloro a cui vengono somministrati farmaci ototossici, farmaci per altre malattie; • gli anziani. ACCESS TO TECHNOLOGIES CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 209 PREVENZIONE E GESTIONE DELLE MALATTIE DELL’ORECCHIO Obiettivo: prevenire e trattare le malattie dell’orecchio nella fase più precoce possibile per evitare la perdita dell’udito associata e altre complicazioni. Periodo di vita: i bambini sono più a rischio di malattie come l’otite media cronica, sebbene queste possano verificarsi anche in adolescenti e adulti. Cosa è incluso: affrontare le comuni malattie dell’orecchio attraverso: • la prevenzione (per esempio, buone pratiche EHC o immunizzazione); • l’identificazione preventiva a livello comunitario e primario attraverso personale qualificato; • gestione medica e chirurgica a livello primario, secondario e terziario (come richiesto per l’otite media acuta e cronica). ACCESSO ALLE TECNOLOGIE Obiettivo: migliorare l’accesso agli apparecchi acustici, agli impianti cocleari o alle tecnologie assistive e servizi correlati a tutti coloro che ne hanno bisogno. Periodo di vita: in tutte le età. Cosa è incluso: • accesso ad apparecchi acustici e impianti cocleari economici e di alta qualità, insieme a batterie e servizi per la manutenzione; • disponibilità di tecnologie assistive per l’udito (ad esempio, Loop System in luoghi pubblici e scuole). SERVIZI DI RIABILITAZIONE Obiettivo: ottimizzare i servizi di riabilitazione uditiva e gli altri ad essa connessi per i soggetti affetti da ipoacusia. Periodo di vita: principalmente richiesto nei bambini di età 0-15 anni e adulti di età superiore ai 60 anni. Cosa è incluso: • servizi di riabilitazione uditiva e del linguaggio multidisciplinari e centrati sulla famiglia per bambini con perdita uditiva; • consulenza e riabilitazione uditiva per adulti con perdita uditiva, specialmente adulti in età avanzata. WORLD REPORT ON HEARING210 MIGLIORAMENTO DELLA COMUNICAZIONE Obiettivo: facilitare la partecipazione a tutte le attività rilevanti per le persone con perdita uditiva. Periodo di vita: in tutte le età. Cosa è incluso: • apprendimento della lingua dei segni e servizi di interpretazione, specialmente in ambienti educativi e sanitari; • servizi di sottotitolazione in contesti professionali e ricreativi al fine di migliorare l’accesso ai contenuti audio per coloro che hanno perso l’udito. RIDUZIONE DEL RUMORE Obiettivo: Assicurarsi che nessun individuo corra il rischio di perdere l’udito a causa di suoni forti. Periodo di vita: adolescenti e adulti in età lavorativa. © R ica rd o M ar tin ez I sottotitoli migliorano l’accessibilità alle riunioni per le persone con problemi di udito CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 211 Cosa è incluso: • programmi professionali di conservazione dell’udito per ridurre il rischio di perdita sul posto di lavoro; • adottare lo standard globale per dispositivi di ascolto sicuri (ITU-T H.87026) come standard nazionale; • regolamenti per luoghi di ascolto sicuri; • programmi mirati a cambiare i comportamenti di ascolto tra i pre adolescenti e gli adolescenti. MAGGIORE IMPEGNO DELLA COMUNITÀ Obiettivo: cambiare i comportamenti e gli atteggiamenti verso la perdita dell’udito e le sue cause. Periodo di vita: in tutte le età. Cosa è incluso: • una strategia di comunicazione su più fronti che generi una maggiore consapevolezza e impegno della comunità per la promozione di: – pratiche EHC sane e ascolto sicuro; – identificazione precoce e interventi per la perdita dell’udito; • creare o rafforzare organizzazioni e associazioni che rappresentano le persone con difficoltà d’udito o sorde, e conferire potere a questi gruppi per poter diventare parti interessate attive e articolate; • collaborare con tutte le parti interessate, compresi coloro che sono sordi e con ipoacusia, per identificare e affrontare le cause della stigmatizzazione associata alla perdita dell’uditiuva e ai problemi all’orecchio. 26 Vedi: https://www.itu.int/rec/T-REC-H.870-201808-I Il rumore viene ora riconosciuto come un importante problema di salute pubblica e uno dei principali rischi ambientali affrontati oggi. Dati i suoi effetti di vasta portata sull’udito, così come su altri aspetti della salute umana è necessaria una forte, coordinata e urgente azione con la partecipazione di governi, industria, società civile e pubblico in generale. WORLD REPORT ON HEARING212 Gli investimenti fatti nella fornitura tempestiva ed efficace di interventi H.E.A.R. avranno molti benefici per la salute, con aumenti economici e produttivi per tutta la società. 4.3 INVESTIRE NELLA CURA DELL’ORECCHIO E DELL’UDITO: IL CASO AZIENDALE Mentre i Paesi si muovono verso l’obiettivo della copertura sanitaria universale e identificano i pacchetti di prestazioni più adatti alle loro esigenze, è essenziale monitorare l’impatto che l’intera operazione può avere sul bilancio e comprendere i processi e i benefici che ne derivano. L’OMS stima che raggiungere l’obiettivo SDG di UHC comporterebbe un costo annuale aggiuntivo di 371 miliardi di dollari nei paesi a basso e medio reddito,27 equivalente a 58 dollari a persona all’anno, che salverebbe 97 milioni di vite e aumenterebbe significativamente l’aspettativa di vita (5). Per questo rapporto, e per aiutare i paesi a capire l’accessibilità e l’efficacia della fornitura di EHC, l’OMS ha stimato le risorse finanziarie aggiuntive richieste e il ritorno che tali investimenti porterebbero nel tempo. L’analisi si è concentrata sul costo aggiuntivo dell’aumento della fornitura integrata dei quattro H.E.A.R.I.N.G. che sono direttamente forniti attraverso i sistemi sanitari: (i) screening dell’udito in diverse fasi della vita; (ii) prevenzione e gestione delle malattie dell’orecchio; (iii) accesso alle tecnologie dell’udito nel corso della vita e (iv) servizi di riabilitazione. È stato valutato il ritorno per ogni dollaro investito, compreso l’impatto sulla salute e i guadagni di produttività derivanti da migliori opportunità di lavoro (6). L’orizzonte temporale dell’analisi è stato fissato al 2020-2030. Sono stati considerati due scenari: uno scenario di “progresso” in cui lo scale-up raggiunge il 50% della popolazione entro il 2030 (o rimane alla copertura di base se già sopra il 50%); e uno scenario “ambizioso” in cui lo scale-up affronta il 90% dei bisogni della popolazione entro il 2030. I risultati chiave dell’analisi sono riassunti nella Figura 4.3 e le informazioni dettagliate fornite nel testo che segue. 27 I livelli di reddito dei paesi considerati nel rapporto mondiale sull’udito sono determinati dalla Banca Mondiale CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 213 Figura 4.3 Investire nella cura dell’orecchio e dell’udito: requisiti e benefici globali Prevenire Beneficiare Portare a guadagni per la salute di un valore di (US$) Portare a guadagni per la salute per un valore di (US$) Portare un ritorno per ogni dollaro investito di (US$) AUMENTO DELLA COPERTURA EHC (%) ENTRO IL 2030 RICHIEDE: PROGRESSIVO (50%) PROGRESSIVO (50%) AMBIZIOSO (90%) AMBIZIOSO (90%) QUESTO LIVELLO DI INVESTIMENTI POTREBBE: Un anno aggiuntivo per investimento pro capite di (US$) Un totale aggiuntivo investimento di (US$) 0.84 1.33 75 bilioni milioni di DALYs milioni di DALYs bilioni di persone bilioni di persone 1.2 trilioni 1.3 trilioni 2.1 trilioni 2.4 trilioni 15.8 16.1 120 bilioni 1.25 1.46 110 130 4.3.1 INVESTIMENTI COMPLESSIVI L’OMS ha stimato che garantire i servizi EHC all’attuale livello di copertura comporterebbe un costo di 120 miliardi di dollari dal 2020 al 2030. Rispetto al “business asusual”, portare la copertura dei quattro interventi EHC (H.E.A.R.) al 90% entro il 2030 richiederebbe un investimento globale aggiuntivo di quasi 120 miliardi di dollari; scalare al 50%, altri 75 miliardi di dollari. L’investimento richiesto varia considerevolmente tra i gruppi di reddito dei paesi (Figura 4.4) e le regioni dell’OMS (Figura 4.5). WORLD REPORT ON HEARING214 Figura 4.4 Costi per gli scenari di scale-up, 2020-2030, per fasce di reddito del paese Ambizioso (90%) Progressivo (50%) Reddito basso Reddito basso 0 0 20 000 10 10 000 40 000 20 40 30 000 60 000 30 50 50 000 80 000 60 70 000 90 000 17 472 8.1 84 130 46.8 83 194 50.9 69 275 42.7 53 911 27.1 47 064 23.9 12 888 6.1 65 705 37.3 Costo in milioni US$ DALYs evitato (in milioni di US$) Reddito medio-basso Reddito medio-basso Reddito medio-alto Reddito medio-alto Reddito alto Reddito alto Ambizioso (90%) Progressivo (50%) c Figura 4.5 Costi per gli scenari di scale-up, 2020-2030, per regione OMSFigure 4.5 &oࢌs for scale-up scenarios, 2020–2030 , by WHO region 77 91252 10012 04129 80733 24633 639 28 927 24 622 25 415 9 431 41 227 65 258 Pacifico Occidentale Sud-Est Asiatico Mediterraneo Orientale EuropaAfricaAmerica Ambizioso (90%) Progressivo (50%) Nota: Questa illustrazione rappresenta le regioni dell’OMS, non i confini dei paesi. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 215 Ogni anno, 1,33 dollari pro capite di investimenti aggiuntivi (oltre gli attuali livelli di spesa) sono necessari per garantire che il 90% della popolazione abbia accesso ai servizi, mentre 0,84 dollari pro capite potrebbero raggiungere il 50% di copertura. L’investimento richiesto varia da 0,53 dollari a più di 1,63 dollari pro capite in diverse regioni del mondo, con la maggior parte degli investimenti pro capite necessari nelle regioni dell’Africa, Pacifico occidentale e Sud-Est asiatico (Figura 4.6). Nei primi anni gli investimenti aumentano, prima di stabilizzarsi e poi diminuire man mano che un numero crescente di soggetti acceda ai servizi EHC (grafico 4.7). Figura 4.6 Investimento annuale pro capite per gli scenari di scale-up, 2020-2030, per regione OMSFigure 4. Per capita annual inveࢌment for scale-up scenarios, 2020–2030, by WHO region 1.59 1.00 1.32 0.86 0.83 0.53 1.12 0.69 1.63 1.01 1.06 0.66 Pacifico Occidentale Sud-Est Asiatico Mediterraneo Orientale EuropaAfricaAmerica Ambizioso (90%) Progressivo (50%) 1ota: 4uesta illustrazione rappresenta le regioni dellȃ206 non i confini dei paesi. 4.3.2 IMPATTO SULLA SALUTE Con più di 130 milioni di DALY evitati in 10 anni, i guadagni di salute dell’EHC si traducono in un valore monetario di oltre 1,3 trilioni di dollari per lo stesso periodo di tempo. Come previsto, una maggiore copertura della popolazione eviterà un maggior numero di DALY in tutti i gruppi di reddito (Figura 4.8) e nelle regioni dell’OMS (Figura 4.9). Annualmente, l’investimento aggiuntivo di 1,33 dollari pro capite è necessario per aumentare l’assistenza all’orecchio e all’udito a livello globale fino al 90% entro il 2030 WORLD REPORT ON HEARING216 Figura 4.7 Costi globali annuali per gli scenari di scale-up, 2020-2030 Figure 4. Annual global coࢌs for scale-up scenarios, 2020–2030 (in million 86) 2029202202 20302024 20220232022 20252020 2021 Ambizioso (0%)Progressivo (50%)Attivita ordinarie&osti in milioni 86 14.5 1.3 1.3 22. 2.1 2.9 25. 23. 21. 20.1 19.1 1.5 15. .3 1.2 15.1 .9 1.4 . 1.3 9.0 1.1 9.5 1. 10.1 19. 10. 19. 11. 19.5 13 0 10 20 30 Figura 4.8 Numero di DALY evitati per gli scenari di scale-up, 2020-2030, per gruppo di reddito del paese Ambizioso (90%) Progressivo (50%) Reddito basso Reddito basso 0 0 20 000 10 10 000 40 000 20 40 30 000 60 000 30 50 50 000 80 000 60 70 000 90 000 17 472 8.1 84 130 46.8 83 194 50.9 69 275 42.7 53 911 27.1 47 064 23.9 12 888 6.1 65 705 37.3 Costo in milioni US$ DALYs evitato (in milioni di US$) Reddito medio-basso Reddito medio-basso Reddito medio-alto Reddito medio-alto Reddito alto Reddito alto Ambizioso (90%) Progressivo (50%) c CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 217 Figura 4.9 Numero di DALY evitati per gli scenari di scale-up, 2020-2030, per regione OMS (in milioni di dollari) 43.9 37 32.2 25.9 6.1 4.9 17.7 15.3 14.3 10.9 18.7 16.1 Figure 4.9 1umber of DALYs averted for scale-up scenarios, 2020–2030, by WHO region Pacifico Occidentale Sud-Est Asiatico Mediterraneo Orientale EuropaAfricaAmerica Ambizioso (90%) Progressivo (50%) Nota: 4uesta illustrazione rappresenta le regioni dellȃ206 non i confini dei paesi. Tradotti in termini economici, i guadagni per la salute in 10 anni sarebbero quindi pari a 1,2 trilioni di dollari quando l’aumento di scala mira a una copertura del 50% e 1,3 trilioni di dollari, quando si raggiunge una copertura del 90%. Le ripartizioni per gruppi di reddito dei paesi sono rappresentate nel grafico 4.10 e per le regioni dell’OMS nel grafico 4.11. I benefici monetari più alti si registreranno nei paesi ad alto reddito, principalmente a causa del loro più alto PIL pro capite (prodotto interno lordo). WORLD REPORT ON HEARING218 Figura 4.10 Benefici DALY monetizzati per gli scenari di scale-up, 2020-2030, per gruppo di reddito del paese WORLD REPORT ON HEARING 0 0 400 000 200 000 100 500 300 700 200 600 400 800 800 000 600 000 1 000 000 1 400 000 1 200 000 1 600 000 8108 8.1 222 393 147 843 738 404.1 720 277 1 194 544 1 351 757 481.2 595 674.7 6345 6.1 182 868 183.8 Guadagni in produttività (in milioni US$) Benefi ci monetizzati DALY (in milion US) Ambizioso (90%) Progressivo (50%) Ambizioso (90%) Progressivo (50%) Reddito basso Reddito medio-basso Reddito medio-alto Reddito alto Reddito basso Reddito medio-basso Reddito medio-alto Reddito alto d Figura 4.11 Benefici DALY monetizzati per gli scenari di scale-up, 2020-2030, per regione OMS (in milioni di dollari) 393.9 462.1 114.6 141.9 28.5 34.9 271.2 311.3 26.0 33.6 317.9 364.0 Figur 4.11 Monetized DALY benefits for scale-up scenarios, 2020–2030, by WHO region Pacifico Occidentale Sud-Est Asiatico Mediterraneo Orientale EuropaAfricaAmerica Ambizioso (90%) Progressivo (50%) Nota: Questa illustrazione rappresenta le regioni dell’OMS, non i confini dei paesi. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 219 4.3.3 NUMERO DI PERSONE CHE NE TRARRANNO BENEFICI Dell’aumento delle cure per orecchio e udito, beneficeranno quasi 1,5 miliardi di persone nell’arco di 10 anni. I numeri sono distribuiti proporzionalmente in tutte le regioni, secondo il loro bisogno totale (Figura 4.12). Figura 4.12 Numero di persone che beneficeranno degli scenari di scale-up, 2020- 2030, per regione OMS, in milioni 513 446 358 299 65 54 188 168 127 102 209 184 Figure 4.12 1umber of people to benefit tKrougK scale-up scenarios, 2020–2030, by WHO region Pacifico Occidentale Sud-Est Asiatico Mediterraneo Orientale EuropaAfricaAmerica Ambizioso (90%) Progressivo (50%) Nota: Questa illustrazione rappresenta le regioni dell’OMS, non i confini dei paesi 4.3.4 AUMENTI DI PRODUTTIVITÀ Investire in questo tipo di cure aumenterebbe le opportunità di lavoro e quindi la produttività all’interno dei paesi con un valore di oltre 2 trilioni di dollari in 10 anni. Mentre la stima dei guadagni di produttività considera una serie di parametri tra cui i tassi di occupazione (6), i guadagni complessivi sono in linea con il prodotto interno lordo delle diverse regioni. Quindi, un valore economico più alto dei benefici di produttività è proporzionale al livello di scale-up (Figura 4.13 e Figura 4.14). In 10 anni, si stima che quasi 1,5 miliardi di persone troveranno beneficio aumentando le cure dell’orecchio e dell’udito. WORLD REPORT ON HEARING220 Figura 4.13 Guadagni di produttività per gli scenari di scale-up, per gruppo di reddito del paese WORLD REPORT ON HEARING 0 0 400 000 200 000 100 500 300 700 200 600 400 800 800 000 600 000 1 000 000 1 400 000 1 200 000 1 600 000 8108 8.1 222 393 147 843 738 404.1 720 277 1 194 544 1 351 757 481.2 595 674.7 6345 6.1 182 868 183.8 Guadagni in produttività (in milioni US$) Benefi ci monetizzati DALY (in milion US) Ambizioso (90%) Progressivo (50%) Ambizioso (90%) Progressivo (50%) Reddito basso Reddito medio-basso Reddito medio-alto Reddito alto Reddito basso Reddito medio-basso Reddito medio-alto Reddito alto d Figura 4.14 Guadagni di produttività per gli scenari di scale-up, 2020-2030, per OMS regione (in milioni di dollari)Figure 4.14 Productivity gains for scale-up scenarios, 2020–2030, by WHO region 864 680185 76845 248608 53727 440694 324 610 539 22 083 533 241 37 662 153 856 746 653 Pacifico Occidentale Sud-Est Asiatico Mediterraneo Orientale EuropaAfricaAmerica Ambizioso (90%) Progressivo (50%) Nota: Questa illustrazione rappresenta le regioni dell’OMS, non i confini dei paesi CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 221 4.3.5 RITORNO SULL’INVESTIMENTO Oltre ai significativi benefici e agli aumenti di produttività che ci si possono aspettare da un’efficace diffusione dei servizi EHC a livello globale, le risorse investite in questo settore sono indubbiamente un buon investimento. Nel complesso, si stima che la tempestiva identificazione e la gestione dei problemi dell’orecchio e dell’udito attraverso l’integrazione degli interventi H.E.A.R. nei sistemi sanitari, nei prossimi 10 anni, si tradurrà in un ritorno di circa 16 dollari per ogni dollaro investito, confrontandosi strettamente con i due scenari di scale-up proposti (cioè 50% o 90%) (Figura 4.15). Anche se l’analisi mostra un eccellente ritorno per gli investimenti nella cura dell’orecchio e dell’udito, è probabile che questa sia una sottostima poiché non tutti i benefici possono essere quantificati o monetizzati. Figura 4.15 Il ritorno netto in dollari per ogni dollaro investito per gli scenari di scale-up, per regione dell’OMS (in dollari) 17.03 17.48 6.29 6.50 6.66 7.02 30.86 31.66 1.83 1.95 31.46 32.10 Figure 4.15 1umber of people to benefit tKrougK scale-up scenarios, 2020–2030, by WHO region Pacifico Occidentale Sud-Est Asiatico Mediterraneo Orientale EuropaAfricaAmerica Ambizioso (90%) Progressivo (50%) Nota: Questa illustrazione rappresenta le regioni dell’OMS, non i confini dei paesi. Aumentare le cure uditive e migliorare la produttività porterebbe guadagni per più di 2 trilioni di dollari USA in 10 anni. WORLD REPORT ON HEARING222 4.3.6 INVESTIMENTI Tutti i paesi devono impegnarsi in un dialogo politico basato sulle evidenze per stabilire politiche e finalizzare gli investimenti per integrare l’assistenza all’orecchio e all’udito nei sistemi sanitari nazionali. Occorre un approccio sistematico per la definizione delle priorità, basato sui bisogni sanitari specifici della popolazione di ciascun paese e dovrebbe considerare l’efficacia dei costi, l’equità e la gestione dai rischi finanziari. Strumenti dell’OMS per l’analisi della situazione (7) e la pianificazione dei servizi EHC (8), forniscono una guida utile per sviluppare una politica strategica. L’uso dello strumento di calcolo dei costi OneHealth dell’OMS (4) può fornire un efficace supporto e guida al processo di pianificazione del paese. Le strategie identificate attraverso le priorità e la pianificazione devono essere integrate nel sistema sanitario di ogni paese seguendo un approccio incentrato sulle persone, come parte dell’implementazione dell’UHC. In parallelo, la capacità del sistema sanitario deve essere rafforzata, in modo che i paesi possano realizzare ciascuno i propri obiettivi nazionali in tema di orecchio e udito e beneficiare degli investimenti in questo campo. Mentre l’obiettivo a lungo termine è che tutti i paesi raggiungano l’ambizioso scenario di copertura del 90% o più, una copertura complessiva del 50% può essere più realistica per alcuni. Sulla base di questi risultati, i paesi devono determinare i propri obiettivi nazionali di scale-up e cercare di allinearli con quelli globali, come delineato di seguito. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 223 Obiettivo: un aumento relativo del 20% della copertura degli interventi H.E.A.R. entro il 2030. 4.4 AUMENTARE LA CURA DELL’ORECCHIO E DELL’UDITO: OBIETTIVI E INDICATORI TRACCIANTI Dati l’importanza e i benefici dell’investimento in un sistematico aumento dei servizi EHC, questo rapporto delinea l’obiettivo globale che i paesi devono raggiungere. Sulla base di ciò che è stato appreso attraverso i dati e le informazioni fornite in questo rapporto, i paesi devono sforzarsi di raggiungere un minimo del 20% di aumento relativo28 alla copertura effettiva dei servizi EHC, dal 2021 al 2030. Per monitorare i progressi verso questo obiettivo, i paesi devono integrare e valutare sistematicamente una serie completa di indicatori29 all’interno dei sistemi sanitari nazionali (come dettagliato nella sezione 4.6). Questo è fondamentale per l’effettiva fornitura dei servizi EHC e per tracciare le prestazioni dei sistemi sanitari nel tempo. A livello globale, tuttavia, sono stati identificati tre indicatori traccianti che possono servire come un’approssimazione ragionevole per misurare la crescita dei servizi EHC nei prossimi 10 anni. L’identificazione si è basata su tre indicatori: • coprire diverse sezioni della popolazione lungo il corso della vita; • essere basati su interventi efficaci; • concentrarsi sull’impatto o sui risultati di salute nei gruppi di popolazione valutati; • avere fasi chiaramente delineate per migliorare la loro copertura; • essere pronti alla misurazione a un intervallo di cinque anni. 4.4.1 INDICATORI TRACCIANTI PER IL MONITORAGGIO DEI PROGRESSI NELLA CURA DELL’ORECCHIO E DELL’UDITO I tre indicatori EHC per la sorveglianza globale sono: 1. Copertura effettiva30 dei servizi di screening dell’udito neonatale nella popolazione: indica la proporzione di neonati con perdita dell’udito in una popolazione che ha ricevuto interventi adeguati entro i primi sei mesi di vita. 28 L’aumento relativo della copertura si riferisce all’incremento dei servizi in proporzione alla copertura dei servizi di base attualmente esistenti. 29 OMS EHC: indicatori per il monitoraggio della fornitura di servizi https://apps.who.int/iris/handle/10665/324936?show=full 30 L’efficacia è una misura del grado in cui i servizi sanitari basati sull’evidenza raggiungono i risultati desiderati. Implica che le persone che hanno bisogno di servizi sanitari li ottengono in modo tempestivo e al livello di qualità necessario per ottenere l’effetto desiderato e i potenziali guadagni di salute. Vedi: https://apps.who.int/iris/bitstream/handle/10665/174536/9789241564977_eng.pdf?sequence=1. WORLD REPORT ON HEARING224 2. Prevalenza di malattie croniche dell’orecchio e perdita dell’udito non trattata nei bambini in età scolare: indica la percentuale di bambini della scuola primaria che hanno un’otite media cronica o una perdita dell’udito per la quale non stanno ricevendo le cure necessarie. 3. Copertura efficace della tecnologia acustica (ad esempio, apparecchi acustici e impianti) usata dagli adulti con ipoacusia: indica il numero di adulti in una popolazione che riportano benefici grazie all’uso della tecnologia acustica in proporzione a coloro che hanno una perdita uditiva (di grado moderato o superiore). I dettagli degli indicatori proposti e i dati necessari per la loro stima sono riassunti nell’ALLEGATO B del WEB. 4.4.2 OBIETTIVI GLOBALI E NAZIONALI In considerazione degli indicatori traccianti definiti sopra, gli obiettivi per espandere la copertura dei servizi EHC sono: 1. Un aumento relativo del 20% nella copertura effettiva dei servizi di screening dell’udito neonatale, entro il 2030. – I paesi con tassi di copertura effettiva inferiori al 50% dovrebbero impegnarsi a raggiungere un minimo del 50% di copertura effettiva. – I paesi con tassi di copertura effettiva del 50-80% dovrebbero impegnarsi ad ottenere un aumento relativo del 20% della copertura effettiva. – I paesi con tassi di copertura effettiva attualmente superiori all’80% dovrebbero impegnarsi per ottenere la copertura universale. – I paesi con gruppi di popolazione coperti dai servizi di screening dell’udito neonatale, dovrebbero garantire una copertura del 95% o superiore. 2. Una riduzione relativa del 20% nella prevalenza di malattie croniche dell’orecchio e perdita dell’udito non affrontata nei bambini in età scolare, dai 5 ai 9 anni. 3. Un aumento relativo del 20% nella copertura effettiva degli adulti con defici@ Adi@ivo che A@i8izzano 8a @ecno8o3ia acAs@ica மcio a<<arecchi acAs@ici e impianti), entro il 2030. – I paesi con tassi di copertura effettiva inferiori al 50% dovrebbero sforzarsi di raggiungere un minimo del 50% di copertura effettiva. – I paesi con tassi di copertura effettiva del 50-80% dovrebbero impegnarsi per ottenere un aumento relativo del 20% della copertura effettiva. – I paesi con tassi di copertura effettiva attualmente superiori all’80% dovrebbero impegnarsi per ottenere la copertura universale. L’OMS propone di monitorare questi indicatori una volta ogni cinque anni, come mezzo per valutare i progressi verso l’obiettivo di rendere le cure dell’orecchio e dell’udito accessibili a tutti. I paesi dovrebbero raccogliere e riferire i dati, cosa che faciliterebbe CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 225 enormemente lo studio delle tendenze globali dell’orecchio e dell’udito nei prossimi anni. Mentre la valutazione corretta di questi indicatori traccianti è fondamentale per il monitoraggio globale, l’importanza di misurare, come parte di una serie completa di indicatori EHC integrati all’interno di sistemi informativi sanitari nazionali, non può essere sopravvalutata. © S he lly C ha dh a In India lo screening scolastico garantisce una prognosi tempestiva nei bambini con disfunzioni uditive. WORLD REPORT ON HEARING226 Il potere degli interventi esistenti deve essere abbinato al potere dei sistemi sanitari per fornirli a coloro che ne hanno più bisogno, in modo completo e su scala adeguata. (9) 4.5 ASSISTENZA ALL’ORECCHIO E ALL’UDITO INCENTRATA SULLE PERSONE ATTRAVERSO UN SISTEMA SANITARIO RAFFORZATO Il percorso verso la copertura sanitaria universale passa attraverso un sistema sanitario forte e resiliente incentrato sulle persone, con l’assistenza primaria come fondamento. Questo approccio richiede un cambiamento di mentalità, dai sistemi sanitari progettati intorno alle condizioni di salute o ai servizi clinici, verso servizi sanitari integrati incentrati sulle persone. Questi forniscono alle persone un continuum di servizi che coprono la promozione della salute, prevenzione delle malattie, diagnosi, trattamento, gestione delle malattie, riabilitazione e cure palliative. I servizi sono coordinati da diversi livelli e siti di cura all’interno e all’esterno del settore sanitario, e secondo le loro esigenze in tutte le fasi della vita. La visione dei servizi IPC-EHC è delineata di seguito nel Box 4.2; esempi ipotetici di come gli individui, affetti da ipoacusia, potrebbero beneficiare dei servizi sono forniti nel Box 4.3. Essere “centrati sulle persone” significa che alle persone nelle comunità debba essere data la possibilità di plasmare sia la politica sanitaria che i servizi da fornire attraverso i sistemi sanitari. L’assistenza incentrata sulle persone significa che i servizi sono organizzati intorno alle esigenze degli individui, delle famiglie e delle comunità, piuttosto che alle singole malattie. Esso significa anche che le persone hanno la consapevolezza, l’educazione e il sostegno necessari per prendere decisioni. Un tale approccio può giovare anche agli operatori sanitari avendo un ulteriore supporto e quindi una maggiore soddisfazione all’interno dell’ambiente lavorativo. Inoltre, implica che i sistemi sanitari siano in grado di rispondere ai bisogni delle persone, comprese quelle per la cura dell’orecchio e dell’udito lungo tutto il corso della vita; e che il necessario Gli interventi H.E.A.R.I.N.G. richiesti sono forniti in modo integrato e senza incidere particolarmente sulle finanze dei pazienti. Questo approccio integrato nel corso della vita è al centro della disposizione EHC raccomandata da questo rapporto. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 227 Box 4.2 La visione OMS dei servizi IPC-EHC Tutte le persone devono avere uguale accesso a servizi IPC di qualità (come parte dei servizi sanitari) che soddisfino i loro bisogni; che rispettino le differenze sociali; che siano coordinati attraverso cure continue; siano completi, sicuri, efficaci, tempestivi, efficienti e accettabili e che tutti gli assistenti siano motivati, qualificati e operino in un ambiente di sostegno. I principi chiave di attuazione di un approccio integrato incentrato sulle persone sono: • guidato dal paese • incentrato sull’equità • partecipativo • basato sull’evidenza • orientato ai risultati • basato sull’etica • sostenibile • basato sul rafforzamento dei sistemi. Basato sul quadro dei servizi sanitari integrati, IPC-EHC comporta: • Responsabilizzare gli individui e le comunità attraverso la conoscenza e informazioni per acquisire una maggior consapevolezza sui bisogni per la cura dell’orecchio e dell’udito. Questo garantisce che la barriera critica della conoscenza per affrontare l’ipoacusia venga superata facilitando il paziente nell’ accettazione di tale diagnosi e nell’utilizzo dei servizi offerti. • Rafforzare la governance e la responsabilità in modo da raggiungere una visione condivisa da tutte le parti interessate. Questo significa che i bisogni EHC possono essere identificati dai responsabili politici e dalle comunità, in modo che i bisogni più urgenti siano prioritari. • Riorientare il modello di cura in modo che l’assistenza primaria e i servizi di qualità EHC basati sulla comunità possano essere prioritari e che le persone abbiano accesso a interventi adeguati vicino al luogo di residenza. Allo stesso tempo, possono accedere a servizi clinici di alta qualità nelle strutture di livello secondario e terziario, coordinati attraverso efficienti percorsi di riferimento (Figura 4.16). WORLD REPORT ON HEARING228 Figura 4.16 Riorientare il modello di cura Figure 4.16 Reorienting the model of care Servizi clinici di livello secondario Servizi altamente specializzati di livello terziario Comunità Livello primario di servizi sanitari Percorso di riferim entoFl us so di in fo rm az io ni • Coordinare i servizi tra i settori costruendo collegamenti e programmi all’interno del settore sanitario, in modo che gli individui e le famiglie possano avere la continuità delle cure. Il coordinamento è necessario anche in altri settori (non sanitari), tra cui i servizi sociali, la fi nanza, l’istruzione, il lavoro, gli alloggi, il settore privato e le forze dell’ordine. • Creare un ambiente favorevole in modo che tutti i settori sanitari lavorino per la fornitura di servizi, come concettualizzato, sia possibile. Questo è utile per tutte le parti del sistema sanitario compresa la leadership; le informazioni sanitarie l’accesso a servizi clinici sicuri e di alta qualità; la forza lavoro; i quadri normativi e la riforma delle fi nanze. Questi fattori sono discussi di seguito (nella sezione 4.3.2), come parte del sistema sanitario per la fornitura di cure per le disabilità uditive. Un bambino riceve la cura dell’orecchio a livello comunitario © H ea r th e W or ld F ou nd at io n CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 229 Box 4.3 La visione di IPC-EHC COSA SIGNIFICHEREBBE IPC-EHC PER LELA? (*un esempio ipotetico) Lela è una ragazza giovane e brillante che vive in un distretto rurale di un paese tropicale a medio reddito, che ha sviluppato dolore e perdite nell’orecchio destro e non è in grado di sentire bene da quel lato. Ha bisogno di adeguate terapie per curare il suo problema. Cosa significherebbe IPC-EHC per lei? Individui e comunità più forti: molti bambini nel villaggio soffrono di secrezioni dall’orecchio e di perdita dell’udito associata. La condizione è così comune, che gli abitanti del villaggio la consideravano “normale” e non vi prestavano molta attenzione, pensando che il bambino possa superarla con il tempo. Ma ora le cose sono cambiate. La gente ha informazioni molto più chiare e utili sui problemi di salute del proprio territorio. Capiscono che molti bambini perdono l’udito a causa delle secrezioni auricolari e che la condizione influisce ulteriormente sull’educazione e sul rendimento scolastico. Si rendono anche conto che alcuni di loro hanno avuto seri problemi a causa di infezioni all’orecchio, che avrebbero potuto evitare. Impegnandosi con i governi locali, le infezioni dell’orecchio sono ora riconosciute come un importante problema di salute nella società. Così, i genitori di Lela hanno capito che le sue secrezioni auricolari indicavano una malattia che richiedeva attenzione e che poteva essere affrontata dagli operatori sanitari locali. Una forte governance: a causa dell’alta prevalenza e dell’impatto delle malattie dell’orecchio, il governo, in seguito al dialogo con la gente della comunità, ha adottato una politica per la fornitura di servizi integrati di cura dell’orecchio e dell’udito. L’attuazione si è concentrata sulla sensibilizzazione, sui problemi uditivi, e sulla fornitura di servizi EHC a tutti i livelli. Questo ha fatto sì che Lela ricevesse i servizi di cui aveva bisogno con una spesa adeguata. Modello di cura riorientato: come risultato della politica del governo, gli operatori sanitari, a livello di comunità e di assistenza sanitaria di base (PHC), sono stati addestrati per identificare e affrontare i problemi comuni dell’orecchio. Ora, quando Lela sviluppa dolore e secrezioni, l’operatore sanitario della comunità individua il problema con una regolare visita. Consiglia ai genitori come pulire l’orecchio e tenerlo asciutto, sottolineando l’importanza di farlo. Li indirizza anche al centro (PHC) dove un medico esamina l’orecchio di Lela e le dà una terapia per trattare l’infezione. Dato che il PHC è vicino al villaggio, i genitori possono portare Lela per le visite di controllo. Quando l’infezione si ripresenta dopo mesi, il medico indirizza Lela all’ospedale distrettuale di livello secondario dove sono disponibili servizi specializzati di otorinolaringoiatria. Con un documento di riferimento e la guida ricevuta dal PHC, i genitori di Lela sono in grado di fare il viaggio notturno per una visita da uno specialista otorinolaringoiatra. A Lela viene chiesto di tornare dopo qualche settimana e viene operata all’orecchio. Questa informazione viene comunicata al medico, al PHC e all’operatore sanitario della comunità. WORLD REPORT ON HEARING230 Servizi coordinati tra i settori: su richiesta del medico, l’operatore sanitario della comunità informa la scuola di Lela della sua condizione, assicurandosi che gli insegnanti siano informati sulle condizioni dell’allieva in modo che lei possa sentirli bene. Un ambiente abilitato: i genitori di Lela possono permettersi il costo dei trattamenti e il viaggio in città grazie alle politiche governative che assicurano sussistenza finanziaria per i servizi EHC, attraverso l’assicurazione sanitaria nazionale. Inoltre, c’è chiarezza in tutti i livelli di cura riguardo a ciò che deve essere fatto. Gli operatori sanitari sono disponibili e ben formati nel riconoscere e nell’affrontare i comuni problemi uditivi. Grazie all’approccio IPC-EHC ben implementato dal governo, Lela può accedere alle cure per l’orecchio e l’udito di cui ha bisogno. Il suo orecchio ora sta guarendo bene e lei continua a recarsi al PHC per il follow-up. L’operatore sanitario della comunità inoltre guida i genitori di Lela su come prendersi cura dell’orecchio e dell’udito per assicurarsi che la sorella e il fratello di Lela non sviluppino simili problemi e che tutti i membri della famiglia imparino a dare valore e a proteggere il proprio udito. COSA SIGNIFICHEREBBE IPC-EHC PER ARI E MIA? (*un esempio ipotetico) Ari vive con la sua famiglia in una città che ospita una grande fabbrica di acciaio. Come la maggior parte degli abitanti della città, Ari lavora in questa fabbrica, così come sua figlia Mia. L’ambiente in cui lavorano è molto rumoroso. Negli ultimi anni Ari ha avvertito un ronzio persistente nelle orecchie e ha notato che spesso non sente cosa dicono i membri della sua famiglia. Ha bisogno di cure per l’udito. Cosa significa IPC-EHC per Ari? Individui e comunità più forti: molte delle persone della città, specialmente quelli impiegati nella produzione dell’acciaio, sono esposti regolarmente ad alti livelli di rumore e a sostanze chimiche ototossiche. Anche se la fabbrica fornisce la protezione dell’udito ai suoi dipendenti, la maggior parte di loro evitava di usarla perché la trova scomoda. Di conseguenza, molti hanno sviluppato un deficit uditivo. In passato, la maggior parte delle persone dava la colpa all’invecchiamento” e non vedeva il nesso tra la perdita dell’udito e l’ambiente di lavoro. Quando i politici e le parti interessate della comunità e della città si sono confrontati sui servizi di salute pubblica, il risultato è stato la comprensione del rischio dell’esposizione al rumore per la loro salute e il loro udito. I politici hanno anche capito che questa era una delle importanti sfide per la salute da dover affrontate nell’attuale società. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 231 Una forte governance: in seguito, un programma completo di tutela dell’udito sul lavoro è stato sviluppato in consultazione con esperti e con la partecipazione della società privata che gestisce l’acciaieria. La sua implementazione è strettamente monitorata dal governo per assicurarsi che i lavoratori siano consapevoli della necessità dei mezzi di protezione dell’udito contro il rumore e le sostanze chimiche ototossiche che usano; che abbiano accesso a otoprotettori confortevoli ed efficaci; che abbiano accesso a protezioni per l’udito comode e di alta qualità; che abbiano regolarmente sessioni di formazione e informazione sulla necessità di protezione dell’udito e i modi corretti di usare l’equipaggiamento protettivo; che i dipendenti su turnazione regolamentata siano collocati anche nelle zone dell’azienda meno rumorose; che abbiano accesso ad aree di riposo prive di rumore; che abbiano regolari e ben documentati esami dell’udito e che venga consigliato loro un esperto per un parere, quando necessario. Modello di cura riorientato: durante l’esame dell’udito di routine allo stabilimento, l’infermiera si rende conto che Ari ha una grave perdita di udito in entrambe le orecchie. E lo guida immediatamente al centro medico della città dove sono disponibili servizi specializzati. Gli viene consigliato un apparecchio acustico e lo stesso centro può fornirne uno di alta qualità e adatto alle sue esigenze. Deve tornare di tanto in tanto per il controllo dell’apparecchio e per imparare ad utilizzarlo al meglio. Servizi coordinati tra i settori: il governo sta lavorando con l’azienda siderurgica per assicurarsi che in fabbrica sia implementato un programma completo di tutela dell’udito e che coloro che sviluppano ipoacusia siano in grado di ottenere apparecchi acustici di alta qualità e servizi associati nelle strutture sanitarie più vicine. Un ambiente abilitato: informazioni chiare e culturalmente appropriate vengono fornite alle famiglie che vivono in città, in modo che possano essere più informate e consapevoli del perché si sviluppa la perdita dell’udito, dei primi segnali e di come l’uso di apparecchi acustici può aiutare chi ha un deficit. Grazie al regolare screening richiesto dal governo, la perdita dell’udito viene identificata precocemente, ottenendo così i servizi di cui i soggetti hanno bisogno con una spesa adeguata. Come risultato di queste azioni per IPC-EHC, Ari è in grado di partecipare di nuovo alle conversazioni in famiglia. Lui incoraggia sua figlia Mia a usare regolarmente la protezione dell’udito ed è molto fiducioso che non dovrà affrontare l’acufene e le disfunzioni uditive che ha avuto lui. Più di ogni altra cosa, lo stigma associato alla perdita dell’udito si sta dissipando in città, e la gente sta iniziando ad accettare l’importanza di proteggere il proprio udito e la necessità di affrontare qualsiasi disfunzione auditiva al primo stadio. WORLD REPORT ON HEARING232 Una cura integrata incentrata sulle persone e attuata attraverso un sistema sanitario può superare tutte le difficoltà. 4.6 FATTORI DI ABILITAZIONE DEI SISTEMI SANITARI PER UN’ASSISTENZA INTEGRATA INCENTRATA SULL’ORECCHIO DELLE PERSONE E SULL’UDITO Per integrare gli interventi H.E.A.R.I.N.G. nei sistemi sanitari, i paesi devono valutare e rafforzare la loro capacità e fornire questi interventi in modo equo lungo tutto il corso della vita. Per raggiungere questo obiettivo, l’OMS prevede che i sistemi sanitari comprendano sei elementi costitutivi: leadership e governance; servizi sanitari; personale sanitario; prodotti e tecnologie mediche; informazioni sanitarie e finanziamenti. I sei blocchi di questo sistema sono mostrati nella Figura 4.17 e descritti più avanti nel dettaglio. Il blocco “servizi sanitari” è centrale in quanto rappresenta i servizi clinici e altri servizi che devono essere erogati a tutti i livelli di cura dell’orecchio e dell’udito nel corso della vita di una persona. Gli interventi chiave relativi a questo si riflettono nel pacchetto H.E.A.R.I.N.G.. Dotare il sistema di risorse ottimali, comprese le risorse umane, tecnologie dell’informazione e della comunicazione, medicinali e dispositivi medici, è centrale per facilitare la fornitura di servizi. Questa sezione fornisce informazioni su questi fattori abilitanti del sistema sanitario che devono essere considerati e sviluppati durante la fase di pianificazione per la fornitura di servizi EHC. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 233 Figura 4.17 Strategie per rafforzare il sistema sanitario per IPC-EHC Politica Supervisione &oࢌruzione di coalizioni Regolamenti (ducazione Formazione Condivisione dei compiti Telemedicina Protezione sociale Impegno del settore privato 9alutazione dei bisogni Obiettivi Indicatori Monitoraggio Standard Approvvigionamento *aranzia di Tualit¢ 6icurezza del paziente SERVIZI DI CURA DELL'ORECCHIO E DELL'UDITOF ina nz iam en to Leadership Manodopera Prod ott i Informazioni 4.6.1 GLI ELEMENTI COSTITUTIVI DEL SISTEMA SANITARIO LEADERSHIP E GOVERNANCE La leadership e la governance sono, forse, l’elemento costitutivo più critico di ogni sistema sanitario. Riflette il ruolo del governo nella salute e il suo rapporto con altri stakeholder o attori le cui attività hanno un impatto sulla salute delle persone. Inoltre, la leadership e la governance implicano la garanzia di un quadro politico strategico e combinato con una supervisione efficace, la costruzione di coalizioni, regolamenti, attenzione alla progettazione del sistema sanitario e alla responsabilità (9, 10). L’obiettivo principale della governance per la fornitura di CCE è quello di guidare il sistema sanitario per promuovere l’accesso ai servizi IPC-EHC e salvaguardare l’interesse della popolazione in generale. Tale leadership e la pianificazione politica sono fondamentali per garantire: • l’integrazione del pacchetto H.E.A.R.I.N.G. di servizi EHC nei piani sanitari nazionali come parte della risposta del sistema sanitario ai bisogni di cura dell’orecchio e dell’udito. Questo richiede un coordinamento tra i vari settori governativi ed i partner non governativi, per garantire che tutte le componenti del pacchetto siano attentamente considerati e sistematicamente affrontati, così come altri bisogni identificati, se pertinenti. WORLD REPORT ON HEARING234 • Lo sviluppo delle politiche e la pianificazione possono assicurare che i servizi EHC siano integrati in tutte le piattaforme di fornitura di servizi lungo tutto il corso della vita. • Disponibilità di servizi EHC a tutti i livelli di fornitura sanitaria (comunità, primario, secondario e terziario). Per esempio, i servizi EHC devono essere parte dei piani di sviluppo del bambino, della salute dell’adolescente, della scuola, dell’invecchiamento sano, dei servizi di salute sul lavoro, ecc. Inoltre, per assicurarsi che questi servizi siano accessibili, essi devono essere integrati nei servizi forniti a livello primario. • Diminuire la spesa associata ai problemi all’orecchio e all’udito e la protezione sociale (come delineato nella sezione 3.4.5). • Il sostegno degli interventi EHC proposti con appropriate politiche e regolamenti basati sull’evidenza. Le funzioni chiave del sistema sanitario per tale integrazione includono: (9, 10) • Orientamento e pianificazione delle politiche: al fine di garantire un accesso equo ai servizi EHC, è essenziale formulare strategie e politiche tecniche adeguate. Tali politiche devono anche identificare i ruoli dei settori pubblico, privato e volontario e il ruolo della società civile. • Intelligence e supervisione: generazione, analisi e uso di intelligence sulle tendenze nella prevalenza della perdita dell’udito e delle malattie dell’orecchio; miglioramenti nella disponibilità di forza lavoro EHC, copertura effettiva dei servizi e risultati sanitari. • Collaborazione e costruzione di coalizioni tra i diversi settori del governo (vedi Box 4.4), e con attori esterni al governo, compresi la società civile e il settore privato per migliorare l’accesso ai servizi EHC a tutte le fasce della popolazione. • Regolamenti, ad esempio per la riduzione del rumore; ampliare la portata della pratica della salute per personale sanitario; migliorare l’accessibilità delle tecnologie per l’udito; compresa la loro attuazione ed esecuzione. Le politiche e la pianificazione possono assicurare che i servizi EHC siano integrati in tutte le piattaforme lungo tutta la vita. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 235 Box 4.4 Settori governativi impegnati nella cura dell’orecchio e dell’udito • Ministero della Salute (agenzia principale) • Ministero del benessere sociale o della giustizia e dell’emancipazione • Ministero dell’Educazione • Ministero del Lavoro • Ministero dell’Ambiente • Ministero delle Finanze o della Pianificazione • Ministero dei Lavori Pubblici • Regolatori sanitari provinciali o statali (se il sistema è decentralizzato). Il processo di pianificazione e monitoraggio dei servizi EHC a livello nazionale può essere supportato dall’uso degli strumenti OMS disponibili. L’applicazione dello strumento di analisi della situazione dell’OMS (7) all’inizio del processo di pianificazione è un modo per ottenere una visione olistica, non solo dei problemi e dei bisogni, ma anche del sistema sanitario e della capacità delle risorse umane. L’analisi della situazione e il processo di pianificazione devono essere guidati dai governi attraverso un approccio collaborativo e trasparente. Le politiche sviluppate devono essere in linea con le priorità identificate e garantire cure di qualità per l’orecchio e l’udito attraverso il sistema sanitario. Queste devono affrontare sfide chiave ed essere sviluppate in collaborazione con i ministeri e le agenzie governative. Le politiche dovrebbero promuovere una collaborazione attiva con partecipanti non statali per un’implementazione e un monitoraggio efficaci. Gli strumenti OMS disponibili per sostenere il processo di sviluppo delle politiche sono riassunti nel Box 4.5. WORLD REPORT ON HEARING236 Box 4.5 Strumenti dell’OMS per la pianificazione dei servizi EHC Come parte della risoluzione WHA70.13, l’OMS ha lanciato una serie di strumenti per sostenere la pianificazione per la fornitura di servizi EHC integrati e di qualità. Questi strumenti includono: 1. Strumento di analisi della situazione EHC, che fornisce un quadro sui bisogni EHC di ciascun paese; la capacità dei sistemi sanitari nazionali per la fornitura dei servizi richiesti e un profilo delle parti interessate che possono contribuire al processo di pianificazione. 2. anAa8e <er 8a <ianificazione e i8 9oni@ora33io de88e s@ra@e3ie naziona8i per EHC, che fornisce una guida dettagliata del processo di sviluppo delle politiche, dalla fase di pre-pianificazione delle priorità, alla determinazione delle attività e delle risorse, all’implementazione, al monitoraggio e alla valutazione. Questa guida delinea anche le responsabilità dei diversi soggetti impegnati nel processo. 3. Indicatori per il monitoraggio della fornitura di servizi EHC, che elenca una serie di 6 indicatori di base e supplementari, ciascuno specifico per ognuno dei 6 blocchi del sistema sanitario dell’OMS, per permettere la loro integrazione all’interno del quadro del sistema sanitario del paese. FINANZIAMENTO SOSTENIBILE E PROTEZIONE SOCIALE Un buon sistema di finanziamento della salute sfrutta fondi adeguati per permettere alle persone di usare i servizi necessari - compresi i servizi EHC - senza incorrere in gravi problemi economici. Un solido sistema di finanziamento della salute deve essere fondato su tre pilastri chiave: (i) la raccolta di fondi provenienti dalle famiglie, dalle aziende o dalle agenzie esterne; (ii) la messa in comune di entrate prepagate che permettano di condividere i rischi; (iii) l’acquisto di attrezzature, medicinali, servizi, il pagamento dei fornitori e la scelta dei processi per finanziare i vari interventi (Figura 4.18). CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 237 Figura 4.18 Pilastri di un sistema di finanziamento solido WORLD REPORT ON HEARINGb Aree di ricerca prioritarie elencate Revisione interna dell’OMS Sessione di brainstorming con un gruppo intersettoriale di stakeholder Ser defi nLre le priorità di ricerca Discussione con esperti per redigere i temi di ricerca Revisione della letteratura e LdentLfi Fa]Lone delle lacune nelle prove UN SOLIDO SISTEMA DI FINANZIAMENTO DELLA SALUTE DEVE ESSERE FONDATO SU TRE PILASTRI CHIAVE La raccolta di entrate da famiglie, aziende o agenzie esterne Il raggruppamento delle entrate prepagate in modi che permettono di condividere i rischi L’acquisto di attrezzature, medicine, servizi, ecc. o il processo con cui si selezionano gli interventi, si fi nan]Lano L serYL]L e si pagano i fornitori 1 2 3 Come per altri servizi sanitari, non esiste un modello unico per un finanziamento di successo dei servizi EHC; tuttavia i principi e gli approcci che si sono dimostrati efficaci per l’acquisto strategico (11) prevedono di: (9, 12) • Minimizzare i pagamenti di tasca propria, attraverso un sistema di pagamento anticipato comune tra i diversi gruppi di popolazione. La tassazione e l’assicurazione sanitaria sono forme di pagamento anticipato. • Assicurare la protezione sociale, specialmente per coloro che hanno scarsi mezzi finanziari e per le persone più vulnerabili. • Rafforzare le relazioni finanziarie con il settore privato. PERSONALE SANITARIO I sistemi sanitari possono funzionare solo con la disponibilità e l’equa distribuzione di una forza lavoro sanitaria competente, motivata e autorizzata a fornire un’assistenza di qualità, adeguata al contesto socio-culturale della popolazione servita. Come per qualsiasi altro settore della salute pubblica, per garantire servizi di qualità per la cura dell’orecchio e dell’udito, è essenziale ottimizzare le prestazioni, la qualità e l’impatto del personale sanitario attraverso politiche informate sulle evidenze scientifiche; allineare gli investimenti per le risorse umane con i bisogni attuali e futuri della popolazione e dei sistemi sanitari; costruire la capacità istituzionale per lo sviluppo della forza lavoro; rafforzare i dati sul personale sanitario p r il monitoraggio e stabilire le r sponsabilità (13). WORLD REPORT ON HEARING238 Paesi a tutti i livelli di sviluppo socioeconomico affrontano sfide nella formazione, nell’impiego, nel mantenimento e nelle prestazioni del proprio personale sanitario. Senza affrontare queste sfide in modo sistematico, le priorità e gli obiettivi rimarranno solo aspirazioni. La stessa cosa accade per i processi legati alle cure per l’udito e per tante altre ambiti e iniziative sanitarie. La distribuzione non omogenea di professionisti, come otorinolaringoiatri, audiologi, logopedisti e insegnanti per i sordi è stata descritta nella sezione 3. Affrontare le lacune di questo settore richiede una pianificazione della forza lavoro attenta e basata sulle evidenze, perché i programmi IPC-EHC vengano applicati. Per garantire buone possibilità di istruzione e formazione, vanno presi in considerazione diversi fattori, tra cui il mantenimento degli operatori sanitari e il miglioramento della distribuzione e delle prestazioni degli operatori sanitari esistenti. Questo si ottiene: (9) • aumentando i numeri e le competenze della forza lavoro sanitaria EHC, attraverso il finanziamento sostenibile di programmi di formazione; • progettando programmi di formazione per altri operatori sanitari (non EHC) che facilitino l’integrazione delle cure uditive nelle diverse fasi della vita, attraverso la condivisione dei compiti; • usando la telemedicina per migliorare l’accesso ai servizi, specialmente in aree remote e poco servite; • organizzando gli operatori sanitari per fornire servizi EHC a diversi livelli di cura. Questo richiede politiche che supportino tali programmi educativi e promuovano la condivisione dei compiti attraverso l’ampliamento dei compiti del personale sanitario (non EHC), il tutto accompagnato da un rimborso. Come delineato nella sezione 3, il task-sharing, quando fa parte di una più ampia strategia della forza lavoro, può migliorare l’accesso ai servizi EHC, ridurre le disparità sanitarie, aumentare l’efficienza e migliorare l’accesso e la qualità delle cure (14-17). Contemporaneamente, le tecnologie innovative e la telemedicina facilitano l’accesso a questi servizi di qualità. Così come per altri servizi sanitari, un personale sanitario “performante” che sia disponibile, competente, reattivo e produttivo, è al centro del sistema integrato e incentrato sulla persona. Questo include tutti coloro che lavorano per proteggere e migliorare la salute, compresi i fornitori di servizi sanitari e gli operatori del settore privato e pubblico. Come per altri servizi sanitari, una forza lavoro sanitaria “ben funzionante” che sia disponibile, competente, reattiva e produttiva, è al centro dell’assistenza integrata all’orecchio e all’udito incentrata sulla persona. Questo include tutti coloro che sono impegnati in azioni per proteggere e migliorare la salute, compresi i fornitori di servizi sanitari, la gestione della salute e i lavoratori di supporto nei settori pubblico e privato (9). CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 239 INFORMAZIONI SANITARIE Informazioni verificate e affidabili, ottenute attraverso un solido sistema informativo, sono alla base dei processi decisionali di tutti i sistemi sanitari. I sistemi informatici sanitari forniscono diverse informazioni su: • fattori chiave della salute (socioeconomici, ambientali, comportamentali e genetici); • ambienti contestuali in cui opera il sistema sanitario; • input nel sistema sanitario e i relativi processi, incluse le politiche, le infrastrutture, le attrezzature sanitarie, i costi e le risorse umane e finanziarie; • prestazioni o i risultati del sistema sanitario come la disponibilità, l’accessibilità, la qualità, l’uso dei servizi sanitari e la protezione dal rischio finanziario; • risultati sanitari (mortalità, morbosità, epidemie, stato di salute, disabilità, benessere); • disuguaglianze sanitarie. Queste informazioni sono raccolte a livello individuale, di struttura sanitaria e più in generale di popolazione (18) e sono necessarie sia per la pianificazione, che per il monitoraggio dei servizi IPC-EHC forniti negli anni. La pianificazione e il monitoraggio devono mirare a: (19) • Determinare i bisogni e le priorità della popolazione nelle diverse fasi del corso della vita, individuando le cause dell’ipoacusia a tutte le età e studiando questa tendenza nel tempo. La pubblicazione a cura dell’OMS “Orecchio e udito: manuale di indagine” fornisce un ottimo strumento in questo senso (20). • Valutare la capacità dei sistemi sanitari di fornire i servizi clinici richiesti; identificare le lacune e monitorare le prestazioni. Il manuale dell’OMS “Cura dell’orecchio e dell’udito: strumento di analisi” è molto utile a questo proposito (7). • Stabilire obiettivi realistici, rilevanti e con scadenze precise; identificare indicatori per valutare l’effettiva copertura dei servizi. Gli obiettivi globali stabiliti dall’OMS sono forniti nella sezione 4.4.2 e dovrebbero essere inclusi negli obiettivi nazionali. Gli obiettivi nazionali devono essere determinati in base alle priorità di ciascuno stato, identificando le cure uditive e le azioni pianificate per affrontarle. La Figura 4.19 mostra i diversi obiettivi e i diversi indicatori. • Integrare gli indicatori all’interno dei sistemi informativi sanitari nazionali e tracciare progressi attraverso l’uso di monitoraggi standardizzati. • Registrare i progressi e quantificare l’efficacia delle strategie utilizzate; identificare le lacune, in modo tale da correggere il tiro. WORLD REPORT ON HEARING240 Figura 4.19 Processo per la definizione di obiettivi e indicatori sulla cura dell’orecchio e dell’udito a Internal WHO review Determinare i bisogni e le priorità della popolazione Integrare gli indicatori EHC nel sistema informativo sanitario Fissare gli obiettivi, determinare gli indicatori Seguire i progressi attraverso strumenti standardizzati Riferire i risultati e l’impatto Listing all interventions required to address KearLnJ loss aFross tKe lLIeFoXrse Review of evidence for listed interventions; Discussion with WHO review group 5eYLeZ oI eYLdenFe ZLtK resSeFt to eff eFtLYeness and Fost eff eFtLYeness oI LdentLfi ed LnterYentLons 5etXrnonLnYestPent 52, stXdLes XndertaNen to assess 52, Ln dLff erent eFonoPLF settLnJs Expert and stakeholder consultations (3) to fi nalL]e lLst oI LnterYentLons Il successo di questo approccio dipende da: (9) un sistema informatico sanitario ben funzionante, che garantisca la produzione, l’analisi, la diffusione di informazioni sanitarie affidabili e tempestive, compresi gli indicatori EHC a tutti i livelli; un sistema di sorveglianza efficace con un’applicazione coerente degli strumenti sviluppati; una corretta compilazione dei dati da parte dell’ufficio responsabile dell’assistenza all’orecchio e all’udito all’interno del Ministero della Salute e il suo regolare rapporto al Comitato Nazionale, con conseguente pubblicazione nei rapporti sanitari (19). PRODOTTI MEDICI, VACCINI E TECNOLOGIE Un sistema sanitario ben funzionante deve garantire un accesso equo ai prodotti medici essenziali di qualità, sicurezza, efficacia e costi-benefici garantiti. Questi includono: (9) • vaccini; • attrezzature diagnostiche per l’esame dell’orecchio e la valutazione dell’udito; • medicine, come ad esempio gli antibiotici e le gocce per le orecchie; • attrezzature chirurgiche per interventi microscopici e di altro tipo sull’orecchio; • tecnologie per l’udito, ad esempio apparecchi acustici, impianti per l’orecchio medio e impianti cocleari. Per garantire un accesso equo e un uso razionale, i prodotti legati all’EHC dovrebbero essere inclusi negli elenchi nazionali delle medicine essenziali, dei dispositivi medici e delle tecnologie assistenziali, in linea con gli elenchi messi a disposizione dall’OMS (21). Le specifiche tecniche dovrebbero essere sviluppate in linea con gli standard internazionali (vedere ad esempio il volume dell’OMS “Profilo preferito per la tecnologia degli apparecchi acustici adatti ai paesi a basso e medio”) (22). I materiali dovrebbero essere acquistati in modo sicuro e affidabile, per evitare contraffazioni e prodotti di bassa qualità. I prodotti utilizzati dovrebbero essere monitorati per accertarne qualità, efficacia e sicurezza. I requisiti del sistema sanitario per assicurare un accesso equo ai dispositivi e ai prodotti di assistenza sono riassunti nella Figura 4.20. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 241 Figura 4.20 Requisiti dei sistemi sanitari per un accesso equo ai dispositivi e ai prodottiFigure 4.20 HealtK syࢌems reTuirements for eTuitable access to devices and products Politiche, standard, linee guida e regolamenti nazionali Informazioni su prezzi, accordi commerciali e capacità di negoziare i prezzi Pratiche di produzione affidabili e valutazione della qualità Sistemi efficienti di approvvigionamento, fornitura, stoccaggio e distribuzione Linee guida che massimizzano la sicurezza del paziente attraverso l'uso razionale dei farmaci, delle tecnologie e delle attrezzature necessarie Ove possibile, i governi dovrebbero incoraggiare le innovazioni e gli adattamenti locali per innovazioni di successo, come le tecnologie per l’udito e le attrezzature diagnostiche o chirurgiche. Tuttavia, tali innovazioni devono essere sottoposte a rigorosi test che ne assicurino la conformità con gli standard di qualità e di sicurezza richiesti e accettati a livello internazionale. 4.6.2 RICERCA PER UN’ASSISTENZA INTEGRATA ALL’ORECCHIO E ALL’UDITO BASATA SULLE EVIDENZE Oltre ai punti sopra menzionati, è importante focalizzare l’attenzione su una ricerca fortemente incentrata sul tema. Politiche sanitarie valide (23) si fondano su ricerca, prove e informazioni. Per questo motivo dunque sono state individuate le lacune, prove e aree principali su cui lavorare. Il processo di identificazione delle aree prioritarie per la ricerca sull’EHC, è riassunto nella Figura 4.21. Nel contesto della promozione dell’IPC- EHC, la ricerca dovrebbe essere orientata verso: (23, 24) • dare priorità ai bisogni EHC, in particolare nei paesi a basso e medio reddito; • costruire dei sistemi sanitari in grado di avere un impatto rilevante sui servizi; • norme che sostengono la creazione di un ambiente favorevole; • la creazione di conoscenze e prodotti che possano essere adattati a diversi contesti culturali e socio-economici; • tradurre le evidenze scientifiche in tecnologie sanitarie accessibili e in politiche sensibili; • avere un impatto importante sulla società. Ricerca, prove e informazioni sono il fondamento per politiche sanitarie complete e per la loro attuazione. WORLD REPORT ON HEARING242 Figura 4.21 Processo seguito per l’identificazione delle aree prioritarie per la ricerca nella cura dell’orecchio e dell’udito WORLD REPORT ON HEARINGb Aree di ricerca prioritarie elencate Revisione interna dell’OMS Sessione di brainstorming con un gruppo intersettoriale di stakeholder Ser defi nLre le priorità di ricerca Discussione con esperti per redigere i temi di ricerca Revisione della letteratura e LdentLfi Fa]Lone delle lacune nelle prove UN SOLIDO SISTEMA DI FINANZIAMENTO DELLA SALUTE DEVE ESSERE FONDATO SU TRE PILASTRI CHIAVE La raccolta di entrate da famiglie, aziende o agenzie esterne Il raggruppamento delle entrate prepagate in modi che permettono di condividere i rischi L’acquisto di attrezzature, medicine, servizi, ecc. o il processo con cui si selezionano gli interventi, si fi nan]Lano L serYL]L e si pagano i fornitori 1 2 3 AREE PRIORITARIE IDENTIFICATE PER LA RICERCA NELLA CURA DELL’ORECCHIO E DELL’UDITO Sulla base delle lacune identificate durante lo sviluppo di questo rapporto, insieme agli input forniti da esperti e stakeholder impegnati attivamente nella fornitura di servizi o nel sostegno all’interno dei paesi, le seguenti aree sono state identificate come prioritarie per lo sviluppo e l’implementazione dell’IPC-EHC: 1. Prevalenza e cause della perdita uditiva valutate attraverso studi basati sulla popolazione, seguendo una metodologia costante. 2. Studio delle barriere che impediscono l’accesso alle cure dell’orecchio e dell’udito in diversi contesti economici e culturali, insieme alle strategie per superare queste barriere. 3. Bisogni, barriere e approcci per migliorare l’accesso nelle popolazioni vulnerabili, incluse le popolazioni indigene. 4. Ipoacusia nascosta e altri effetti del suono sull’orecchio. 5. Approcci e strumenti per cambiare i comportamenti di ascolto nelle persone più a rischio di ipoacusia a causa di pratiche di ascolto non sicure. 6. Approcci innovativi per l’identificazione precoce della ipoacusia nel corso della vita, secondo un rapporto costi/efficacia. Con un’attenzione particolare agli anziani e ai bambini in età scolare. 7. Approcci alla fornitura di servizi che migliorino l’accesso alla riabilitazione dell’udito, comprese le tecnologie acustiche, specialmente nei paesi a basso e medio reddito. 8. Modelli di distribuzione e condivisione dei compiti tra gli operatori medici interessati, per migliorare il rapporto costo-efficacia dei servizi EHC. 9. Formazione degli operatori sanitari e dei paraprofessionisti nelle cure primarie dell’orecchio e dell’udito. 10. Modelli di tele salute e salute digitale per la fornitura di servizi EHC in popolazioni poco servite. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 243 11. Tecnologie uditive di alta qualità e convenienti, che corrispondano alle esigenze del paese e possano essere prodotte localmente, in particolare l’auto-adattamento e altre tecnologie simili. 12. Strumenti diagnostici di alta qualità innovativi e convenienti, apparecchi acustici e impianti. 13. Modelli di finanziamento sanitario per migliorare l’accesso alle tecnologie e ai servizi uditivi. 14. Impatto delle politiche e dei regolamenti nel migliorare l’accesso alle tecnologie e ai servizi, aumentare le pratiche di ascolto sicuro, prevenire la sordità attraverso il controllo del rumore e la regolamentazione dei farmaci ototossici/chimici. 15. Efficacia e rapporto costi-benefici delle strategie di salute pubblica come: – standard e norme per dispositivi di ascolto sicuri e luoghi di ascolto sicuri; – campagne di sensibilizzazione per la prevenzione delle malattie dell’orecchio e della perdita dell’udito; – riduzione del rumore in ambienti professionali, ricreativi o ambientali; – immunizzazione contro le cause di ipoacusia prevenibili da vaccino. 16. Nuovi vaccini (per esempio CMV) e terapie per la prevenzione e la gestione della perdita dell’udito e loro applicazione nella sanità pubblica. 17. Approcci per una maggiore disponibilità dei servizi di traduzione nel linguaggio dei segni, servizi di sottotitoli e tecnologie assistenziali (ad esempio i sistemi di loop). Questo elenco non è esaustivo: si concentra principalmente sugli aspetti di salute pubblica nella cura dell’orecchio e dell’udito che fanno riferimento a H.E.A.R.I.N.G. e ai fattori abilitanti del sistema sanitario, ma non spiega nel dettaglio quali siano le aree di ricerca cliniche e terapeutiche. Questi dati invece sono fondamentali per garantire una buona prevenzione, soluzioni mediche, chirurgiche e riabilitative efficaci per le malattie dell’orecchio e la perdita uditiva. Tuttavia, la ricerca sul rapporto costi-benefici e sui modelli di fornitura dei servizi è altrettanto importante, per concretizzare questi benefici previsti per la salute pubblica. CASE STUDY Il Giappone dà la priorità alla ricerca per la cura dell’udito Il Giappone dà priorità alla cura degli anziani come strategia essenziale per la salute pubblica. Il paese ha la più alta percentuale di anziani al mondo e per questo è stato definito come una società di “super invecchiamento” (25). L’alta incidenza di ipoacusia, e la sua relazione con il declino cognitivo, ha spinto il Giappone a fare continue ricerche scientifiche. Riconoscendo che l’esposizione al rumore e l’ascolto non sicuro sono tra le principali cause di ipoacusia, il Giappone si è concentrato sul tema dell’ascolto sicuro, attraverso l’impegno degli scienziati nello sviluppo di standard globali OMS-ITU, per un ascolto sicuro basato sulle evidenze scientifiche. Inoltre, la Commissione giapponese per la tecnologia delle telecomunicazioni ha adottato lo standard globale OMS-ITU come standard nazionale. WORLD REPORT ON HEARING244 L’assistenza integrata alle cure per l’orecchio e per l’udito deve essere disponibile e accessibile a tutti, dove e quando necessario, senza causare problemi economici. 4.7 CONCLUSIONI E RACCOMANDAZIONI: RENDERE LE CURE UDITIVE ACCESSIBILI A TUTTI In tutto il mondo, oltre 400 milioni di persone sperimentano limitazioni nella propria vita quotidiana a causa di una perdita uditiva non affrontata, mentre oltre 1 miliardo di persone sono a rischio ipoacusia. Nonostante la sua alta incidenza, il Rapporto mondiale sull’udito dimostra che la perdita uditiva può essere prevenuta e il suo impatto mitigato attraverso misure tempestive ed efficaci. Negli ultimi decenni, il campo delle cure uditive è progredito molto, grazie allo sviluppo di tecnologie di alto livello e approcci innovativi per l’erogazione dei servizi. Nonostante questi sviluppi, la stragrande maggioranza di coloro che hanno bisogno di servizi EHC non può accedervi. E anche quando i servizi sono disponibili, sono le persone a non farne richiesta, per colpa del basso livello di conoscenza del problema e dello stigma ad esso associato. Quindi, risulta fondamentale un approccio di salute pubblica, fatta di tecnologia e innovazione, che garantisca benefici a tutti coloro che ne hanno bisogno. I molti problemi legati al settore delle cure uditive - come analizzato in questo rapporto, insieme alle soluzioni presentate - possono essere riassunti nella mancanza di attenzione da parte della sanità pubblica verso il tema dell’ipoacusia e la necessità di un approccio legato alla salute pubblica. I rischi sempre crescenti, i numeri e l’impatto della perdita uditiva, che ad oggi rappresentano una quota significativa del peso globale delle malattie e sono responsabili di oltre 35 milioni di DALY l’anno,31 devono servire da campanello d’allarme per i responsabili delle politiche sanitarie in tutto il mondo. Per garantire che tutti i cittadini possano godere di uno stato di salute ottimale, i servizi EHC devono essere universalmente accessibili. Adottare un approccio incentrato sulle persone che integri l’assistenza all’orecchio e all’udito nei sistemi sanitari nazionali come parte della copertura sanitaria universale è l’unico modo per affrontare questa sfida crescente. 31 Vedi: http://www.healthdata.org/research-article/global-burden-369-diseases-and-injuries-1990%E2%80%932019-systematic- analysisglobal-burden. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 245 Il Rapporto mondiale sull’udito propone il pacchetto H.E.A.R.I.N.G. come una lista completa di interventi per affrontare tutti gli aspetti legati ai problemi uditivi, durante tutto il corso della vita. Oltre a mostrare i costi per investire in questo tipo di cure, compresi i benefici e i guadagni economici, il rapporto stabilisce anche un obiettivo globale di scale-up per il 2030 e delinea gli indicatori che possono monitorare il progresso globale verso l’obiettivo. I paesi devono agire per valutare le proprie esigenze, dare priorità agli interventi più rilevanti per soddisfare i bisogni della loro popolazione, e integrarli sistematicamente nei loro piani sanitari nazionali utilizzando le risorse disponibili. Le azioni chiave raccomandate per fare questo sono esposte di seguito. 4.7.1 RACCOMANDAZIONI PER I MINISTERI DELLA SANITÀ RACCOMANDAZIONE 1: INCLUDERE L’IPC-EHC NELLA COPERTURA SANITARIA UNIVERSALE Azioni: • Determinare i bisogni e le priorità della popolazione per le cure dell’orecchio e dell’udito in ogni singolo paese e integrare il pacchetto H.E.A.R.I.N.G. nell’assistenza sanitaria universale, sulla base delle priorità identificate. • Garantire un accesso equo ai servizi EHC per tutti, compresi quelli che vivono in aree remote o appartenenti a gruppi vulnerabili. • Fornire protezione dal rischio finanziario e ridurre le spese vive per le cure dell’orecchio e dell’udito. • Coinvolgere altri settori governativi e la società civile, comprese le organizzazioni per persone sorde e con deficit di udito nella pianificazione e nell’implementazione per promuovere un approccio olistico e collaborativo. RACCOMANDAZIONE 2: RAFFORZARE I SISTEMI SANITARI PER FORNIRE IPC-EHC A TUTTI I LIVELLI DI ASSISTENZA Azioni: • Considerare l’IPC-EHC come parte dei piani sanitari nazionali per la fornitura di cure a tutti i livelli (comunità, livello primario, secondario e terziario) in modo integrato, affrontando i bisogni di tutte le fasce della popolazione, compresi le fasce di popolazione più deboli. • Assicurare l’integrazione delle cure lungo tutto l’arco della vita, compresi, tra gli altri, i programmi per la salute dei bambini, l’invecchiamento sano, i servizi di salute sul lavoro, la salute ambientale e le attività di promozione. WORLD REPORT ON HEARING246 • Aumentare i programmi educativi per lo sviluppo di quadri professionali. • Rafforzare la formazione di altri operatori sanitari (non EHC) e altri (ad esempio, insegnanti, assistenti sociali, ecc.) sulla perdita dell’udito e il loro ruolo nel sostenere l’accesso a una comunicazione efficace. • Migliorare l’accesso a tecnologie uditive di alta qualità e a prezzi accessibili (apparecchi acustici, impianti cocleari e altri dispositivi di assistenza) e ai servizi necessari per un loro uso efficace. RACCOMANDAZIONE 3: INTRAPRENDERE CAMPAGNE DI SENSIBILIZZAZIONE CHE AFFRONTINO GLI ATTEGGIAMENTI E LO STIGMA RELATIVI ALLE MALATTIE DELL’ORECCHIO E ALLA PERDITA DI UDITO Azioni: • Informare le persone sulle cause evitabili di ipoacusia, sul suo impatto e sull’efficacia degli interventi che si possono attuare lungo tutto il corso della vita. • Sviluppare una strategia di comunicazione efficace per cambiare i comportamenti di ascolto tra coloro che sono a rischio di ipoacusia a causa di pratiche di ascolto non sicure. • Utilizzare l’opportunità di sensibilizzazione fornita ogni anno dalla Giornata Mondiale dell’Udito, come un mezzo per informare ed educare il pubblico sulla cure dell’orecchio e dell’udito. • Includere moduli sull’IPC-EHC nei corsi di formazione professionale, come ad esempio per l’otorinolaringoiatria, l’audiologia e la logopedia, per promuovere un approccio di salute pubblica tra i professionisti dell’EHC. • Promuovere, con la collaborazione dei settori governativi competenti, la comunicazione attraverso i servizi del linguaggio dei segni e altri mezzi, come ad esempio i sottotitoli. RACCOMANDAZIONE 4: DETERMINARE GLI OBIETTIVI, MONITORARE LE TENDENZE NAZIONALI E VALUTARE I PROGRESSI Azioni: • Valutare i progressi verso gli obiettivi EHC usando gli indicatori traccianti identificati. • Identificare e includere indicatori EHC completi nei sistemi informativi sanitari nazionali e assicurare il loro regolare monitoraggio. • Pubblicare gli indicatori e valutare i progressi verso il raggiungimento degli obiettivi, come parte delle relazioni nazionali sulla salute. CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 247 • Valutare la perdita dell’udito come parte delle indagini sanitarie basate sulla popolazione e riportarla in modo standardizzato (cioè in conformità con i gradi OMS di perdita dell’udito32) • Condividere dati, conoscenze e risorse con altri paesi e regioni attraverso partenariati forti e reti di collaborazione. RACCOMANDAZIONE 5: PROMUOVERE UNA RICERCA PUBBLICA DI ALTA QUALITÀ SULL’ORECCHIO E SULL’UDITO Azioni: • Sviluppare un’agenda nazionale in linea con le priorità globali. • Promuovere e sostenere gli studi che si concentrano sulla rilevanza, le implicazioni e l’applicazione dei risultati della ricerca sulla salute pubblica. • Rafforzare i legami tra ministeri della salute, organizzazioni di ricerca e istituzioni, per un approccio collaborativo che allinei la ricerca alle priorità nazionali EHC. • Stabilire un meccanismo per incoraggiare il finanziamento della ricerca sulla salute pubblica, che si concentra sulla cura dell’orecchio e dell’udito. 4.7.2 RACCOMANDAZIONI PER LE ORGANIZZAZIONI INTERNAZIONALI RACCOMANDAZIONE 1: ALLINEARSI AGLI OBIETTIVI GLOBALI DELL’WHO PER LA CURA DELL’ORECCHIO E DELL’UDITO E SOSTENERE IL LORO MONITORAGGIO Azioni: • Promuovere l’accesso agli interventi H.E.A.R.I.N.G. per raggiungere l’SDG 3.8. • Sostenere i paesi a basso e medio reddito nello sviluppo, nell’implementazione e nel monitoraggio dei servizi IPC-EHC. • Sostenere la creazione di un sistema di monitoraggio globale guidato dall’OMS per valutare gli indicatori che monitorano l’effettiva copertura degli interventi H.E.A.R.I.N.G. 32 Vedi: https://www.who.int/pbd/deafness/hearing_impairment_grades/en/ WORLD REPORT ON HEARING248 RACCOMANDAZIONE 2: ADOTTARE MISURE PER MIGLIORARE LE CONOSCENZE, GLI ATTEGGIAMENTI E LE PRATICHE RELATIVE ALLA CURA DELL’ORECCHIO E DELL’UDITO Azioni: • Impegnarsi con i leader di pensiero e gli influencer a livello globale e regionale per sensibilizzare sull’argomento e mitigare lo stigma legato alla perdita di udito. • Utilizzare l’opportunità fornita ogni anno dalla Giornata Mondiale dell’Udito per aumentare la consapevolezza sull’ipoacusia. • Promuovere l’iniziativa OMS Make Listening Safe33 e adottare pratiche che siano allineate alle raccomandazioni dell’OMS. RACCOMANDAZIONE 3: STIMOLARE LA CREAZIONE E LA DIFFUSIONE DI CONOSCENZE SULL’ORECCHIO E SULLA CURA DELL’UDITO Azioni: • Incoraggiare e sostenere la ricerca relativa alle cure uditive, in linea con le priorità di ricerca identificate dall’OMS. • Costruire collaborazioni internazionali che generino prove rilevanti per il contesto nazionale e facilitino lo scambio di conoscenze. • Collaborare attraverso la condivisione dei dati, usando una metodologia ben defita e piattaforme coerenti. RACCOMANDAZIONE 4: PARTECIPARE ATTIVAMENTE ALL’AZIONE GLOBALE PER LE CURE UDITIVE Azioni: • Partecipare, sostenere e contribuire al World Hearing Forum34 promosso dall’OMS e alla sua azione globale per la cura dell’orecchio e dell’udito. • Promuovere la collaborazione globale per migliorare l’accesso alle tecnologie uditive di alta qualità e per promuovere prezzi accessibili e servizi correlati. • Assicurare che la cura dell’orecchio e dell’udito vengano incluse nelle iniziative globali e regionali, in particolare, quelle mirate alla salute di bambini, adolescenti e adulti più anziani. 33 Vedi: https://www.who.int/activities/making-listening-safe 34 Vedi: https://www.who.int/activities/promoting-world-hearing-forum CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 249 4.7.3 RACCOMANDAZIONI PER LE PARTI INTERESSATE, COMPRESI I GRUPPI PROFESSIONALI, SOCIETÀ CIVILE ED ENTI DEL SETTORE PRIVATO RACCOMANDAZIONE 1: SOSTENERE I GOVERNI NAZIONALI NELLA FORNITURA E NEL MONITORAGGIO DELLE CURE UDITIVE Azioni: • Promuovere e sostenere i governi nella fornitura di IPC-EHC attraverso l’integrazione degli interventi H.E.A.R.I.N.G. nei piani sanitari nazionali. • Sostenere l’OMS nel monitoraggio degli indicatori traccianti identificati, come mezzo per valutare la crescita nella fornitura di servizi EHC a livello globale nel tempo. RACCOMANDAZIONE 2: CONTRIBUIRE ALLO SVILUPPO DI CONOSCENZE SUGLI ASPETTI DI SALUTE PUBBLICA DELLE MALATTIE DELL’ORECCHIO E DELLA PERDITA UDITIVA Azioni: • Intraprendere ricerche in linea con le priorità di ricerca identificate dall’OMS; pubblicare e condividere i risultati. • Migliorare l’alfabetizzazione EHC tra i professionisti dell’orecchio e dell’udito includendo un modulo di salute pubblica nei corsi professionali pertinenti. RACCOMANDAZIONE 3: COLLABORARE PER ASSICURARE CHE TUTTE LE PARTI INTERESSATE POSSANO CONTRIBUIRE E CONDIVIDERE UNA VISIONE COMUNE DELL’ASSISTENZA DELL’ORECCHIO E DELL’UDITO Azioni: • Istituire e sostenere gruppi regionali e subregionali di multi stakeholder per identificare esigenze, risorse e opportunità specifiche della regione, in collaborazione con l’OMS. • Aderire e sostenere il World Hearing Forum per promuovere un’azione globale coordinata e collaborativa sulla perdita dell’udito. WORLD REPORT ON HEARING250 RACCOMANDAZIONE 4: EVIDENZIARE L’IMPORTANZA, LA NECESSITÀ E I MEZZI PER LA CURA DELL’UDITO E SOSTENERE LA SUA PRIORITÀ NELLE AGENDE SANITARIE DEL GOVERNO Azioni: • Partecipare ogni anno all’evento di sensibilizzazione Giornata Mondiale dell’Udito come mezzo per aumentare il profi lo della cure uditive nelle comunità e tra i responsabili politici a tutti i livelli. • Organizzare eventi nazionali e sub-regionali e dialoghi politici per promuovere l’adozione delle pratiche contenute nel Rapporto mondiale sull’udito. © R ica rd o M ar tin ez La prima riunione del World Hearing Forum nel dicembre 2019 presso la sede dell’OMS a Ginevra, Svizzera CAPITOLO 4 PROGETTARE IL PERCORSO: UN QUADRO DELLA SALUTE PUBBLICA PER LA CURA DELL’ORECCHIO E DELL’UDITO 251 BIBLIOGRAFIA 1. World Health Organization. Universal health coverage. Available at: https://www.who.int/ westernpacific/health-topics/universal-health-coverage , accessed December 2020. 2. United Nations. 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