Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Myanmar Epilepsy Initiative Myanmar Epilepsy Initiative, Department of Neurology, Yangon General Hospital. Bogyoke Aung San Road, Latha Township, Yangon. 11131 Email: mepilepsyi.who@gmail.com © 2018 Myanmar Epilepsy Initiative and World Health Organization All rights reserved. No part of this publication may be reproduced, stored in any retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording and/or otherwise, without prior written permission of the WHO & MEI Project. Legal Disclaimer Myanmar Epilepsy Initiative: Piloting the WHO programme on reducing the epilepsy treatment gap 2013-2017 is a collaboration between the World Health Organization and the Ministry of Health and Sports, Myanmar. The technical information contained in Myanmar Epilepsy Initiative: Piloting the WHO programme on reducing the epilepsy treatment gap 2013-2017 originates from multiple sources. All reasonable precautions have been taken to verify the information contained in this document. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall the Myanmar Epilepsy Initiative and World Health Organization be liable for damages arising from its use. Design and layout Erica Lefstad Photos from Dirk Teuwen, UCB and Diego Rodriguez, WHO Published by Dr. Thant Thaw Kaung Myanmar Book Center Book House (00220) No.55, Corner of Ahlone Road and Baho Road, Ahlone Township, Yangon. Printed by WHO Country Office for Myanmar Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Myanmar Epilepsy Initiative 5The global problem The treatment gap – Workforce shortages – Accessibility, affordability and availability of anti-seizure medication – The economic and social impact of epilepsy The global response – Global Campaign Against Epilepsy – WHO Programme on reducing the epilepsy treatment gap Epilepsy in Myanmar – The health care system – Mental health and neurological services Epilepsy: a public health problem Co nt en ts . Foreword Acknowledgements Abbreviations and acronyms Executive summary Introduction & summary 1 Project goals Methods 1. Develop a strategy for delivering epilepsy care 2. Capacity building of health care providers 3. Awareness raising 4. Provision of nonspecialized care for epilepsy 5. Monitoring and evaluating the initiative Results – Coverage in all 12 townships – Adequate follow-up – Reduction in seizures – Improvement in quality of life Lessons learned Moving forward – Commitment from policy-makers – Moving toward universal coverage for epilepsy References Annex 1 Sample new patient data form Annex 2 Sample follow-up consultation form Annex 3 Sample monthly report form Annex 4 New cases and follow-up consultations per township Myanmar Epilepsy Initiative References & annexes Review & next steps 2 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 This report was prepared under the overall guidance and conceptualization of Shekhar Saxena and Tarun Dua, WHO Department of Mental Health and Substance Abuse. The publication was written and edited by Myo Paing (WHO Country Office for Myanmar), San Oo (Department of Neurology, University of Medicine 1 / Yangon General Hospital), Nyan Tun (Consultant Neurologist), Pe Thet Htoon (Public Health Coordinator), Thi Han Zaw (M&E officer) and Meredith Fendt-Newlin (WHO headquarters). Kara Jaeschke and Neha Mukul Kinariwala (WHO headquarters) contributed to technical review and editing of the report. Special thanks are extended to Dr. Stephan Paul Jost, WHO Representative to Myanmar for his unwavering support and Nazneen Anwar, Regional Adviser for Mental Health, WHO South-East Asia Regional Office. Thanks to the leadership provided by the Project Coordination Committee, headed by Professor Win Min Thit (Department of Neurology, University of Medicine 1 /Yangon General Hospital), Dr. Maung Maung Lin and other members of the Myanmar Epilepsy Initiative team. Administrative support was provided by Stellar Myint (WHO Country Office for Myanmar). Technical editing was completed by Vivien Stone. The contribution of each of these team members and partners, which was crucial to the success of this project, is warmly acknowledged. We gratefully acknowledge the financial contribution of UCB, with special thanks to Dr. Dirk Teuwen for his inputs. Acknowledgements "Fight against epilepsy initiative" i Ghana | WHO Programme on reducing the epilepsy treatment gap 2012–2016 3Epilepsy affects more than 50 million people worldwide. Although it is a treatable condition, almost three quarters of affected people in low- and middle-income countries do not receive treatment. Many health professionals do not have the training to recognize, diagnose and treat epilepsy, and medicines are often unavailable or unaffordable. In many parts of the world, people living with epilepsy and their families experience stigma and discrimination in their communities. To defeat epilepsy and tackle the burden of disease, the WHO Programme on reducing the epilepsy treatment gap has been implemented in the South-East Asian and African regions. In a collaboration between the World Health Organization and the Ministry of Health and Sports, the Myanmar Epilepsy Initiative was launched in 2013. Over the past 5 years of the project’s implementation, the Myanmar Epilepsy Initiative has been gradually scaled up to cover 12 townships across seven states/regions by the close of 2017, reaching a total population of 2.9 million people. Since its inception, 2315 health care providers have been trained and 1709 new cases of epilepsy identified and treated in the community. A great achievement of the pilot project has been increasing the coverage in implementing areas from 2% to 47%. The project’s advocacy efforts have proved successful – evidenced by the launch of the Five-year Strategic Plan for Epilepsy (2016–2020) and the National Framework for Epilepsy Care in Myanmar. The Myanmar Epilepsy Initiative has demonstrated a model that is effective in reducing the epilepsy treatment gap. With a population of 53.8 million, successful nationwide scale up for epilepsy care in Myanmar will only be possible through an innovative, decentralized model that is integrated within existing primary care health services, to reach people living with epilepsy close to home. The efforts between World Health Organization and the Ministry of Health and Sports generated evidence and lessons learned that will now be applied in a scale up programme to ensure long-term sustainability of accessible, affordable and quality care for epilepsy in Myanmar. The scale up programme will reach 85 townships in nine states/regions by the end of 2021, with full coverage of all townships in five states/regions. It will offer an opportunity to test the model’s effectiveness in responding to the burden of epilepsy and improving the quality of life for people living with epilepsy in Myanmar. Dr. Myint Htwe Union Minister, Ministry of Health and Sports Foreword 4 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 BHS basic health staff CT computerized axial tomography DALYs disability-adjusted life years EEG electroencephalography GCAE Global Campaign Against Epilepsy GP general practitioner HMIS Health Management Information System IBE International Bureau for Epilepsy ILAE International League Against Epilepsy KAP knowledge, attitude and practices LMIC low- and middle-income countries M&E monitoring and evaluation mhGAP mental health Gap Action Programme mhGAP-IG mental health Gap Action Programme Intervention Guide MO medical officers MoHS Ministry of Health and Sports MRI magnetic resonance imaging NCD noncommunicable disease NGO nongovernmental organization PCC project coordination committee QoL quality of Life RHC rural health centre ToTS training of trainers and supervisors VHW voluntary health workers WHA World Health Assembly WHO World Health Organization Abbreviations 5Executive summary Epilepsy is a major public health problem: it is a chronic noncommunicable disease of the brain that affects more than 50 million people worldwide. Epilepsy accounts for 0.5% of the global burden of disease and is associated with stigma, physical and psychiatric comorbidity, and high economic costs. Nearly 80% of people living with epilepsy reside in low- and middle-income countries, and 75% do not receive the treatment they need. Over half of the people living with epilepsy worldwide are estimated to live in Asia. In comparison with Africa, Asia has more untreated patients, with greater treatment costs and possibly higher premature mortality. According to the WHO Atlas: country resources for neurological disorders (second edition), the median number of neurologists is extremely low in South-East Asia (0.1 per 100 000 population) and the Western Pacific (1.2) – far fewer than the ratio in Europe (6.6). In Myanmar, it is estimated that around 500 000 people live with epilepsy, a prevalence of 1.1 per 1000 population. An estimated 95% of people living with epilepsy do not receive the care required. The main reasons for this include the limited number of health care providers trained to provide care and support to people living with epilepsy, the limited access to anti-seizure medications, and a lack of awareness and health education about epilepsy. For more than 20 years, the WHO has led the global movement against epilepsy. Within the framework of the Global Campaign Against Epilepsy, WHO aims to bring epilepsy “out of the shadows”, encouraging countries to prioritize epilepsy in public health planning, as well as raise awareness of the disease among health care providers and the general public. 6 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 The WHO Programme on reducing the epilepsy treatment gap seeks to achieve these goals in pilot locations in Myanmar, Ghana, Mozambique and Viet Nam, which can be used as a model for scale up in other countries. The Programme offers an innovative community-based model focused on expanding the skills of nonspecialist health care providers to diagnose, treat and follow up people living with epilepsy. Epilepsy is included as a priority condition in the WHO mental health Gap Action Programme (mhGAP). It’s evidence-based guidelines facilitate delivery of interven- tions by nonspecialist health care providers and is used in the WHO Programme on reducing the epilepsy treatment gap to strengthen care provided for people living with epilepsy and their families. The Programme also includes strengthening of health systems to increase sustainable access to anti-seizure medications, reinforcing referral systems, ensuring better monitoring of epilepsy in health information systems, and raising awareness to support people living with epilepsy and their families. The Myanmar Epilepsy Initiative was launched in 2013 in a phased approach. In 2013, the project was initiated in the two townships of Hlegu and Hmawbi and then subsequently scaled up to Lewe, Kawhmu and Thalyinin 2014; Nyaundon, Thaton and Kyaikhto in 2015; Sagaing and Taunggyi in 2016, and Nyaunglebin and Pantanaw in 2017. The project gradually expanded to 12 townships, from seven states/regions, covering 2.9 million people. In 2013 and 2014, situation analyses and baseline surveys were carried out in the first five project townships to better understand the existing needs and resources. The prevalence of epilepsy ranged from 0.83 to 1.9 per 1000 population in the surveyed townships, with an average prevalence of 1.4 per 1000 population that was used to estimate the number of people living with epilepsy in other townships for planning purposes. A survey of knowledge, attitude and practices carried out in five townships showed that most health care providers did not have experience or confidence in treating epilepsy. More than 80% of health care providers had never attended any training on epilepsy. Surveys with community members revealed high levels of stigma and discrimination, as well as a lack of knowledge in how to care for people living with epilepsy. Early stakeholder engagement with a variety of experts in public health, neurology, the Ministry of Health and Sports, nongovernmental organizations and research were key to the achievement of several project goals. A project coordination committee was established to lead and advise on project implementation. Due to this successful advocacy, the following policies were approved by the Ministry of Health and Sports: • Five-year Strategic Plan for Epilepsy (2016–2020) • National Framework for Epilepsy Care in Myanmar • nationwide scaling up proposal for epilepsy. In order to integrate epilepsy care into primary health and ensure community participation, a cascade model of training was put in place with evidence-based tools from the mental health Gap Action Programme (mhGAP). During the project implementation period (2014–2017) a total of 2231 health care providers and 84 specialists were trained: • 237 medical officers • 1023 basic health workers A survey of knowledge, attitude and practices… showed that most health care providers did not have experience or confidence in treating epilepsy. 7 • 971 voluntary health workers • 84 specialists who provided training and supervision • Refresher trainings were provided to 828 health care providers. Community awareness was raised through multiple channels. Locally developed information, education and communication materials, such as comic books for children, a video and song, and posters in health clinics, reached a variety of audiences. The project galvanized the support of national celebrities to spread messages about epilepsy and reduce stigma. 21 336 health education talks were held between 2014–2017 that reached over 285 000 people. A national support group was established for people living with epilepsy and their families. These efforts not only raised awareness and reduced stigma, but they also led to an increase in the number of people living with epilepsy seeking treatment and care. Major achievements of the project included ensuring treatment and care for epilepsy in 12 townships covering a population of 2.9 million. Contact coverage increased from 2% to 47% in the 4 years of data collection. • A total of 1709 new cases of epilepsy were identified in the project townships and 18 028 follow-up consultations conducted to ensure continued care. • A reduction in seizures (by at least 50%) was observed in follow-up visits in most project townships. • A significant improvement in subjective quality of life was reported for people who received epilepsy treatment. The project was successful in ensuring the adequate and sustainable availability of medicines, of anti-seizure medications via the government procurement system. Approval for the use of phenobarbital (a controlled medicine included in narcotic psychotropic substances) by basic health staff to be used for the treatment of epilepsy was also obtained. A comprehensive monitoring and evaluation system was established to provide a clear understanding of the avail- ability of anti-seizure medication in rural health centres, the use of epilepsy services, and patient outcomes. The project has planned for future integration with the existing health management information system so that epilepsy indicators will be collected routinely nationwide. The Myanmar Epilepsy Initiative demonstrates that epilepsy care can be feasibly and cost-effectively integrated into the primary health system in a low-resource setting. The many lessons learned will be used to scale up services to 85 townships, covering all townships in five states/regions over the next 4 years. Contact coverage increased from 2% to 47% in 4 years of data collection. The availability of anti- seizure medication improved substantially in all project townships. 8 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Epilepsy: a public health problem The global problem The treatment gap – Workforce shortages – Accessibility, affordability and availability of anti-seizure medication – The economic and social impact of epilepsy The global response – Global Campaign Against Epilepsy – WHO Programme on reducing the epilepsy treatment gap Epilepsy in Myanmar – The health care system – Mental health and neurological services 9Approximately 50 million people have epilepsy, making it one of the most common neurological conditions globally (1,2). It is estimated that 80% of persons with epilepsy live in low- and middle-income countries (LMIC), where they have limited access to treatment (3). 10 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 65. By comparison, the incidence of epilepsy peaks in older children and young adults in LMIC (5). The higher prevalence and incidence of epilepsy in LMIC is partly explained by some risk factors such as head trauma, perinatal injury and central nervous system infections, which are more common in low-resource settings, especially in rural areas. When classified together, neurological conditions were one of the leading causes of disability-adjusted life years (DALYs) in 2015 (250.7 million, comprising 10.2% of global DALYs) and the second-leading cause group of deaths (9.4 million, comprising 16.8% of global deaths) (6). DALYs are the sum of two components: years of life lost due to premature mortality and years lived with disability. One DALY is equivalent to one healthy life-year lost and a particularly useful metric to quantify the burden of noncommunicable diseases (NCDs) (e.g. epilepsy) that often result in long-term disability for survivors (Fig. 1). Approximately 50 million people have epilepsy, making it one of the most common neurological conditions globally (1,2). It is estimated that 80% of persons with epilepsy live in low- and middle-income countries (LMIC), where they have limited access to treatment (3). The prevalence of epilepsy is reported to vary substantially between countries: estimated as 5.8 per 1000 persons in high-income countries, and 15.4 per 1000 persons in rural and 10.3 in urban populations of LMIC (4). In high-income countries, the incidence of epilepsy presents a U-shaped curve with highest rates in children and people over age The global problem Fig. 1. Global burden of epilepsy as the percentage of total DALYs (both sexes, all ages, 2016) Source: GBD Compare (7) 11 Overall, epilepsy contributed more than 12 million DALYs (0.5% of the worldwide burden of disease or 5% of the burden of neurological conditions) to the global burden of disease in 2015 (6). It ranked second only to stroke among selected neurological conditions in terms of years of potential life lost. The profound physical, psychological and social conse- quences of epilepsy impose significant burdens on people living with epilepsy and their families (8). People living with epilepsy tend to have more physical problems, such as fractures and bruising from injuries related to seizures, and a higher prevalence of mental health conditions, such as depression, anxiety and psychosis, compared with the general population (9,10). These comorbidities are associ- ated with poorer health outcomes, increased health care needs, decreased quality of life (QoL) and higher mortality. More than 70% of children with epilepsy have some level of disability affecting their daily life (11). Neurological comorbidities in children with epilepsy vary, including intellectual disability, language impairment, migraines and sleep problems. The most common mental health condi- tions among children who have epilepsy include attention- deficit hyperactivity disorder, depression and anxiety disorders (12). People living with epilepsy are at an overall increased risk of premature death (13,14). Mortality in people living with epilepsy in LMIC is estimated to be 2.6 times higher than in the general populations of those countries and significantly higher than in high-income countries (15). This is likely to be due to the higher incidence of preventable causes such as road traffic injuries, drowning, burns and birth-related injuries; and variations in medical infrastructure. Epilepsy resulting from infection is a major cause of morbidity and mortality in low-income countries and the most preventable cause of epilepsy worldwide (16). Premature mortality imposes a significant public health burden, and many of the specific causes of death are potentially preventable. >> People living with epilepsy are at an overall increased risk of premature death. More than 70% of children with epilepsy have some level of disability affecting their daily life. 12 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 • lack or severe shortage of appropriately trained health care providers; • inadequate and inconsistent access to affordable medicines; • social misconceptions; and • poverty (20). It is estimated that 70–80% of people living with epilepsy could lead normal lives if properly diagnosed and treated (21). However, despite the cost–effectiveness of anti-seizure medications, at as little as US$ 5 per year (22), the majority of affected individuals in low-resource settings do not receive treatment. Left untreated, people living with epilepsy face devastating social consequences, including stigma and discrimination, human rights viola- tions and premature mortality. The epilepsy treatment gap is defined as the proportion of the population who require but have not received treatment for epilepsy (17). It a useful parameter to compare access to care for epilepsy across populations; and an important indica- tor for policy-makers. The treatment gap is estimated to be over 75% in low-income countries and over 50% in most middle-income countries (17). Even in high-income countries, where the treatment gap is under 10%, there are disparities in rural versus urban settings (Fig. 2). In Asian countries, the treatment gap is estimated between 29% and 98%, with values for most countries between 50% and 95% (18,19). The causes for this lack of access to treatment are multi- faceted and complex, involving financial, educational and social factors. These include, but are not limited to: • the low public health priority of epilepsy in many countries; • limited capacity of health care systems to address epilepsy and inequitable distribution of resources; Treatment gap 0% 50% 100% Ru ra l Ur ba n Tr ea tm en t g ap Lo w in co m e Hi gh in co m e Lo we r m id dl e in co m e Up pe r m id dl e in co m e Fig. 2. Disparities in the epilepsy treatment gap Source: adapted from Meyer et al (2010) (17) The treatment gap is estimated to be over 75% in low-income countries and over 50% in most middle-income countries. 13 Workforce shortages Delivery of efficacious interventions in low-resource settings can only be achieved if people living with epilepsy are correctly identified and assessed. In high-income countries misdiagnosis occurs in 5–30% of cases, and in LMIC this is likely to be higher (23). The shortage of trained professionals in the health workforce to assess and manage epilepsy in primary care is a key factor affecting the treatment gap. Results from WHO Atlas: country resources for neurological disorders (24) showed that the global median of the neurological workforce (defined as the total number of neurologists, neurosurgeons and child neurologists) is 3.1 per 100 000 population. This total figure does not reflect the significant discrepancy between low- and high-income countries which reported median neurological workforce figures of 0.1 and 7.1 per 100 000 population, respectively (Fig. 3). Accessibility, affordability and availability of anti-seizure medication The accessibility, affordability, availability and poor quality of medicines are also key factors affecting access to epilepsy treatment. Although effective anti-seizure medications are on the WHO Model List of Essential Medicines (25) and are purportedly available in all countries (26), distribution and quality of medicines are inconsistent, thus limiting access to treatment. Phenobarbital is the least expensive anti-seizure medication (22), but its distribution has been restricted due to its classification as a controlled substance in some countries (27). The median cost of first-line anti-seizure medications varies across regions and is higher in low and middle- income countries than in high-income countries (28). In general, the cost of phenobarbital in South-East Asia is 2.7 times higher than in Europe, and two to six times higher than in sub-Saharan Africa (28). A study of the availability and prices of anti-seizure medications in southern Viet Nam showed that less than 60% of pharmacies had anti-seizure medications available and monthly treatment costs ranged from US$ 3.30 for carbamazepine (200 mg) to US$ 22.50 for valproic acid (200 mg) (29). Because epilepsy management requires sustained treatment with anti-seizure medications to avoid seizures and other health and social problems, the low availability and affordability are public health issues and important barriers to universal health coverage. 0 5 4 3 2 1 6 7 8 9 10 Lo w in co m e Hi gh in co m e Gl ob al Lo we r m id dl e in co m e Up pe r m id dl e in co m e 0.1 1.4 3.1 7.1 3.1 Fig. 3. Median neurological workforce per 100 000 population, by World Bankc income group Source: adapted from WHO (2017) (24) >> 14 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 marriage, obtaining a driving licence, and reduced access to health and life insurance. In some countries epilepsy is viewed as a demonic curse or the result of spiritual possession and seizures thought to be contagious (32). In Asia, there exist strong cultural perceptions of epilepsy that rely on nonscientific explanations (33). Many people seek treatment from alternative systems of medicine, such as Ayurveda in India and Sri Lanka, and acupuncture in Thailand (19). In the Republic of Korea, the name for epilepsy was recently changed from a stigma- tizing term to a neutral and scientific term meaning “cerebroelectric disorder” (34), in an effort to reduce the stigma by understanding epilepsy as a neurologic disease. Misunderstandings about epilepsy play an important role in preventing people from accessing treatment and care, in addition to furthering stigma. The economic and social impact of epilepsy The high health care costs related to assessment and treatment for epilepsy, as well as lost employment, income and household work, are well recognized. A systematic review of 322 studies assessing the economic impact of epilepsy found the total costs associated with epilepsy varied significantly in relation to the duration and severity of the condition, response to treatment, length of time since diagnosis and health care setting (30). Out-of-pocket costs and productivity losses were found to create substan- tial burdens on households. People living with epilepsy have also been shown to utilize more health resources than those with other chronic health conditions (31). In many parts of the world, people living with epilepsy and their families suffer from stigma and discrimination because of ignorance, misconceptions and negative attitudes surrounding the disease (3). They face serious difficulties in, for example, education, employment, Misunderstandings about epilepsy play an important role in preventing people from accessing treatment and care, in addition to furthering stigma. >> 15 16 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Global Campaign Against Epilepsy For more than 20 years, WHO, with the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE), have led the Global Campaign Against Epilepsy (GCAE), a movement to bring epilepsy “out of the shadows” and raise awareness of the disease among health care providers and the general public (35). The GCAE has made substantial progress in encouraging countries to prioritize epilepsy, which resulted in WHO regional declarations in all six WHO regions and the successful completion of a number of demonstration projects (3). Demonstration projects were conducted in China, Senegal, Zimbabwe and Brazil, among others. These were designed to identify people living with epilepsy and to reduce the treatment gap through the education of health care providers, dispelling stigma, eradicating preventable causes of epilepsy and integrating epilepsy care in public health systems. The project in China estimated the number of people living with epilepsy in the country to be around 9 million, with a treatment gap of 63% (36). The project successfully implemented training of health care providers to diagnose and manage epilepsy in nonspecialized settings, significantly reducing the treatment gap by about 13%, and was shown to be cost-effective. WHO Programme on reducing the epilepsy treatment gap In 2012, the WHO launched the Programme on reducing the epilepsy treatment gap to build on the activities of the GCAE and to provide epilepsy care and services using a community-based model. This model combines several innovative strategies such as extending the skills of nonspecialist primary health care providers to diagnose, treat and follow up people living with epilepsy; mobilizing nongovernmental organizations (NGOs), community groups and volunteers to raise awareness and support people living with epilepsy and their families; and strengthening health systems to ensure sustainable access to anti-seizure medications, reinforce referral systems, and ensure better monitoring of epilepsy in health information systems. Pilot projects for the Programme were initiated in four countries: Ghana (37), Mozambique, Myanmar and Viet Nam. The Programme works in synergy with other WHO resources, including the mental health Gap Action Programme (mhGAP) and the mhGAP Intervention Guide (mhGAP-IG). mhGAP-IG is a technical tool that has been developed through a systematic review of evidence followed by an international consultative and participatory process. It has modules related to epilepsy and its treatment, including emergency treatment of seizures. Countries implementing the WHO Programme on reducing the epilepsy treatment gap have translated and adapted the mhGAP-IG to local contexts, provided training of health care providers, and successfully integrated mhGAP into national plans and strategies. mhGAP has made a great contribution to scaling up epilepsy services worldwide (38). At the political level, WHO and its partners have long recognized that epilepsy is a major public health concern. This was reflected in 2015, when the World Health Assem- bly (WHA) approved unanimously a resolution on the global burden of epilepsy, which urges Member States to implement a coordinated action against epilepsy and its consequences (see Box on right). The global response 17 WHA68.20 Global burden of epilepsy and the need for coordinated action at the country level to address its health, social and public knowledge implications In 2015, the WHA adopted a resolution on the global burden of epilepsy and the need for coordinated action at country level to address its health, social and public knowledge implications. This resolution urges governments to formulate, strengthen and implement national policies and legislation to promote access to care and protect the rights of people living with epilepsy. It emphasizes the importance of training nonspecialist health care providers in order to reduce the epilepsy treatment gap. It recognizes the essential role of increasing access to epilepsy care in achieving better health for all people. The resolution calls on the 194 Member States, with coordination by WHO, to: • strengthen effective leadership and governance and improve provision of epilepsy care; • integrate epilepsy management into primary health care and increase access to medicines; • support strategies for the prevention of epilepsy; • increase public awareness of and education about epilepsy; • strengthen health information and surveillance systems; and • increase investment in research and research capacity. To accomplish these actions, political commitment by governments is vitally important, as shown by previous successful GCAE projects in a number of LMICs (37). The Myanmar Epilepsy Initiative is an example of how the recommendations in WHA68.20 can be put into action at a national level. Almost 20 years after the establishment of the GCAE, the WHA resolution is a landmark, creating new opportunities in the long-standing collaboration between the WHO, ILAE and IBE to address the needs of people living with epilepsy (3). For more information, please see: http://www.who.int/mental_health/neurology/epilepsy/resolution_68_20/en/ 18 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Epilepsy in Myanmar 19 Epilepsy is a serious public health issue that imposes an enormous physical, psychological, social and economic burden on individuals, families and the country due to misconceptions, fear and stigma. It is estimated that there might be 500 000 people living with epilepsy in Myanmar. There is an absence of nationwide statistics regarding the prevalence of epilepsy in the country, but a survey on generalized tonic–clonic seizures (major fits) conducted in one township (Nyaungdon) estimated the prevalence at 1.1 per 1000 population (19). Limited data from annual hospital statistics (39) showed that among the neurological diseases treated in private and public hospitals, epilepsy ranked second in both males and females. Myanmar, located in South-East Asia, is bordered by Bangladesh, India, China, the Lao People’s Democratic Republic and Thailand, with a long coastline on the Bay of Bengal and Andaman Sea. Myanmar’s population of 53.8 million is made up of many ethnic groups, the largest being Bamar (Burman), constituting about 68% of population. In this heterogeneous society, there are many obstacles to the provision of health services to the whole nation (40). Epilepsy in Myanmar It is estimated that there might be 500 000 people living with epilepsy in Myanmar. >> 20 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 The health care system Myanmar transitioned to a civilian government in March 2011. Since then, the health care system has evolved with the changing political and administrative systems. However, problems remain in access to health care services and quality of services, particularly in the areas of maternal and child health, nutrition, and infectious disease controls (40). Health care is organized, funded and delivered by both public and private providers. National and international NGOs and community-based organizations support health care. As hospital statistics by the government cover only public facili- ties, the information on private facilities is limited. According to World health statistics 2018 (41), the number of doctors per 100 000 population in Myanmar was 61, and 100 nurses and midwives; while in South-East Asia as a whole, there were 59 and 153, respectively. Despite recent increases in the health workforce, there is an uneven spread of skilled health care providers between urban and rural areas. About 70% of the population resides in rural areas. Basic health staff (BHS) are the main health care providers for people living in rural areas and are based in rural and sub-rural health centres (RHC). Fig. 4 provides and overview of the health service structure in Myanmar. Overseen by medical officers (MO), the BHS are responsible for disease surveillance and control, treatment of common illnesses, referral services, immunization and nutrition programmes, and training of volunteer health workers (VHW), including community health workers and auxiliary midwives. These health workers face many challenges in their efforts to reach out to remote villages, with minimal resources and support. Mental health and neurological services There is a limited infrastructure and a shortage of skilled human resources for mental health, including neurology, in Myanmar. The country has two psychiatric hospitals, 25 outpatient mental health facilities, and 17 community- based psychiatric inpatient units. However, 87% of government mental health expenditure goes to the hospitals (42). Mental health expenditure comprises 0.3% of total health care expenditure. The total number of mental health professionals (in public and private sector) is 627; at a rate of 1.20 per 100 000 population (43). Most of the population in Myanmar has no medical insur- ance. Those who can afford it consult neurologists in private practice while the rest rely on government hospitals for their care, from either neurologists or primary care workers (44). The country has 25 neurologists (18 in public health services) and 19 neurosurgeons (15 in public health services). All four neurological centres have computerized axial tomography (CT), magnetic resonance imaging (MRI) and electroenceph- alography (EEG), and one has electromyography. Training programmes for neurologists are available in Yangon General Hospital, Mandalay General Hospital and North Okkalapa General Hospital. The Myanmar Neurology Society was founded in 2000 and is affiliated to World Federation of Neurology, the ASEAN (Association of Southeast Asian Nations) Neurological Association and the ILAE. In Myanmar, an estimated 95% of people living with epilepsy do not receive the care required. 21 In Myanmar, an estimated 95% of people living with epilepsy do not receive the care required (19). The main reasons for this include the limited number of health care personnel trained to provide care and support to people living with epilepsy, the limited access to anti-seizure medications and the lack of awareness and health education about epilepsy. Fig. 4. Health service structure in Myanmar Ministry of Health and Sports Department of Human Resources for Health Department of Medical Research Department of Food and Drug Administration Department of Traditional Medicine Department of Sports and Physical Education Department of Public Health Department of Medical Care State/region Medical Care Department State/region Public Health Department Universities and training schools State/region Food and Drug Administration District Medical Care Department District Public Health Department Township Medical Care Department Township Public Health Department Station hospital Rural health centre/sub-RHC Office of Permanent Secretary 22 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Myanmar Epilepsy Initiative Project goals Methods – Develop a strategy for delivering epilepsy care – Capacity building of health care providers – Awareness raising – Provision of nonspecialized care for epilepsy – Monitoring and evaluating the initiative 23 In 2013, the Myanmar Epilepsy Initiative was launched to address the epilepsy treatment gap by improving access to quality care for people living with epilepsy in communities. Within the framework of the WHO Programme on reducing the epilepsy treatment gap, the pilot project was rolled out in a phased approach, gradually expanding to 12 12 townships in five regions and two states, covering a population of 2.9 million. Considerable successes have been achieved and valuable experience gained during the implementation. Project goals The main goal of the 5-year project was to improve the care and services at the primary health care level to reduce the epilepsy treatment gap. Specific objectives of the Myanmar Epilepsy Initiative were to: 1 Develop a strategy to deliver epilepsy care to ensure accessibility to proper treatment and care for people living with epilepsy down to the rural communities. 2 Promote training of health care providers, making them competent in assessing and treating epilepsy. 3 Develop epilepsy information, education and communication (IEC) materials to improve awareness of public and community groups through widespread health education activities. 4 Integrate provision of care and services for epilepsy into the primary health care system for long-term sustainability. 5 Enhance capacity to monitor and evaluate the project and disseminate the knowledge. 24 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Develop a strategy for delivering epilepsy care Strengthening of services to deliver epilepsy treatment and care is an ongoing process, involving various aspects of formative planning for modification and refinement within the existing health system. For this reason, a phased approach to implementation was developed. The first year of the Myanmar Epilepsy Initiative focused on initial planning, where the necessary approval from the Ministry of Health and Sports (MoHS) was obtained and the project leadership was established. Effective coordination with engaged and committed stakeholders was required to implement the project. In 2013, baseline surveys to assess the situation of epilepsy treatment and care in primary health services was conducted in two townships in Yangon Region following which implementation commenced and was gradually expanded to 12 townships in seven states/ regions (Fig. 5). Establishment of project leadership Implementation of project activities requires a variety of skills, knowledge of the local health system and public health priorities, and leadership from multiple disciplines. In July 2013, a project coordination committee (PCC) was established. The PCC consisted of high level experts in disciplines of public health, neurology, paediat- rics, medical care, academia, epidemiology, mental health, as well as epilepsy specialists. Representatives from the WHO also facilitated the process of project coordination. Leadership by the PCC was essential to advocate for the Myanmar Epilepsy Initiative across service levels. The PCC helped the project team to coordinate with township and state/regional level health department officials to procure anti-seizure medications in the government system, organize training, supervision, and monitoring and evaluation (M&E) visits (Fig. 6). The project team met monthly to discuss any problems or constraints encountered and identify solutions. 1 Lewe Sagaing Taunggyi Patanaw Nyaungdon Hmawbi Nyaunglebin Kyaikhto Thahton Thanlyin Kawhmu Hlegu Year 2, 2014: Yangon and Naypyitaw Regions Year 1, 2013: Yangon Region Year 3, 2015: Mon State and Ayeyerwaddy Region Year 4, 2016: Sagaing Region and Shan State Year 5, 2017: Ayeyerwaddy and Bago Regions Fig. 5. Phased approach to piloting the project across states/regions and townships in Myanmar Lewe Sagaing Taunggyi Patanaw Nyaungdon Hmawbi Nyaunglebin Kyaikhto Thahton Thanlyin Kawhmu Hlegu Year 2, 2014: Yangon and Naypyitaw Regions Year 1, 2013: Yangon Region Year 3, 2015: Mon State and Ayeyerwaddy Region Year 4, 2016: Sagaing Region and Shan State Year 5, 2017: Ayeyerwaddy and Bago Regions 25 Stakeholder collaboration Engaging with a variety of stakeholders was key to the success of the project and achievement of several project goals. For example, in the MoHS, the Director General of the Food and Drug Administration played a pivotal role regarding the procurement of anti-seizure medications and the Deputy Director of Health Education was involved in the development and production of IEC materials for awareness raising. Patient and family groups also partici- pated in the development of the materials. Neurologists and professors from university departments of medicine and public health in Yangon, Magwe and Mandalay were consulted on the design and implementation of project activities. It was important to advocate with township level stakeholders early on in the project’s implementation. Prior to rolling out the project in a new township, advocacy meetings were held with local Myanmar Medical Association branches, and township, ward and village level administrative personnel. In addition, all international and national NGOs involved in health care delivery, representatives from local community-based organizations and community leaders were involved (e.g. Myanmar Red Cross Society, Myanmar Maternal and Child Welfare Association). Teachers and state/regional level education officers participated in advocacy meetings and learned about the issues that children with epilepsy encounter in school. Particular emphasis was placed on the acceptance for enrolment of children with epilepsy into schools, to reduce stigma and discrimination. Question and answer sessions were held and IEC materials about epilepsy and the project were distributed. >> Ministry of Health and Sports Project Coordination Committee State/ Region Health Department Myanmar Epilepsy Initiative District/ Township Health Department Fig. 6. Project organization “Since we now have gained knowledge on epilepsy as a result of this meeting, we can include the topic of epilepsy in our health education sessions in the community. ” Member of Myanmar Maternal and Child Welfare Association attending the advocacy meeting in Nyaunglebin 26 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Baseline situation analysis A situation analysis is an assessment of the baseline situation in the potential study sites, used to identify the services and resources available in nonspecialized health care settings. It is an essential first step for informed decision-making and was used in planning the implementation of the project. National and state/regional level situation analyses were completed in 2013. Results helped to inform project planning as they collected data on the state of epilepsy services, policies, programmes and government expenditure for mental health, and stocks of anti-seizure medication. A household survey, to determine the prevalence of epilepsy in the implementing townships, was carried out across five townships between 2013–2014. For one township, Nyaungdon, the prevalence data from a 2005 survey were used. Based on these findings, the prevalence in the remaining townships was estimated using census population data and an average prevalence in six survey townships at 1.4 per 1000 population (Table 1). The situation analysis in Hlegu and Hmawbi townships showed that more than 97% of community members surveyed wanted the epilepsy project in their townships. On the other hand, the analysis revealed strong negative attitudes and enormous stigma attached to epilepsy among community members: • 22–42% did not want their children to play with other children living with epilepsy; • 83–89% did not want their offspring to marry persons with epilepsy; and • 80–89% disagreed to employ a person with epilepsy. A knowledge, attitude and practices (KAP) survey was carried out in 2014 in the next three implementation townships of Thanlyin, Kawhmu and Lewe. The goal was to determine help-seeking patters for epilepsy care among health care providers and community members. The KAP survey revealed that most nonspecialized health care providers in the townships surveyed did not have any experience in treating epilepsy and that most lacked confidence in doing so. Among the health care providers surveyed, more than 80% had never attended training on epilepsy and 95% said they wanted training on epilepsy. Community members also lacked information on epilepsy, with people recommending placing an object into the person’s mouth during a seizure to prevent tongue biting – an action that is not recommended by clinical guidelines (mhGAP-IG). As detailed in Fig. 7, many barriers to accessing care for epilepsy were identified by health care providers and community members, with “the lack of trained health professionals” mentioned across the townships (mean 92.0%). >> Among the health care providers surveyed, more than 80% had never attended training on epilepsy and 95% said they wanted training on epilepsy. 27 District Total population Estimated no. of epilepsy cases Prevalence (per 1000 population) Hlegu 214 967 335.8 1.6 Hmawbi 199 993 377.2 1.9 Kawhmu 127 246 148.2 1.2 Lewe 287 024 460.7 1.6 Thanlyin 232 437 194.0 0.8 Kyaikhto 169 454 237.2 1.4* Nyaungdon 226 967 249.7 1.1 Thahton 265 737 372.0 1.4* Sagaing 300 900 421.3 1.4* Taunggyi 382 534 535.6 1.4* Nyaunglebin 202 199 283.1 1.4* Pantanaw 265 002 371.0 1.4* Total 2 874 460 3985.8 1.38 Table 1. Prevalence of convulsive epilepsy in project townships * Estimated prevalence, an average of the prevalence in six surveyed townships. Fig. 7. Key barriers identified to accessing care for epilepsy in three townships 0 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Lack of trained health professionals Socioeconomic difficulties Stigma related to epilepsy Unavailability of anti-seizure medications Lewe Thanlyn Kawhmu 94.9 97.0 84.0 88.9 94.0 82.0 79.8 95.5 78.0 86.8 74.6 74.0 28 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 29 . Capacity building of health care providers The workforce is the most valuable asset of a health system but the shortage of health care providers in Myanmar was found to be a key barrier to strengthening services. Therefore, capacity building of a nonspecialized workforce was deemed the most viable strategy for increasing access to epilepsy care. Training of health care providers was based on adapted mhGAP materials, which are designed to be used in- service (i.e. continuing education). This broadens the existing attitudes, knowledge and skills of health care providers, and requires coordination with specialists to ensure optimum delivery and continued support and supervision. A cascade model of training was introduced, where specialists were trained as trainers and supervisors, then various cadres of the workforce in Myanmar were trained to provide epilepsy treatment and care. 2 Adaptation of generic training materials and tools Adaptation involves making changes to components of the training package to ensure the content and delivery is meaningful and helpful to the cultural context. Prior to the commencement of training, mhGAP training manuals for trainers and supervisors were adapted for the cultural context using local case studies and role plays. The manuals for MO, BHS and VHW were also adapted to fit in with the Myanmar health care system. The manuals for MO were developed in English and for the BHS and VHW in Myanmar language. Video presen- tations of the various types of epilepsy were developed and found to be very effective in training. Materials were further revised following feedback from participants at the training sessions. It was decided to give more atten- tion to case scenarios in the training, which help partici- pants (especially medical doctors) deal with various situations encountered in managing epilepsy cases. Practical case presentations of people living with epilepsy not only enable understanding of the clinical and management aspects but also the impact of epilepsy on the person and the family. Revisions to the training materials were again carried out in 2017 using the updated version of mhGAP-IG 2.0. Training health care providers During the project implementation period a total of 84 specialists were trained as trainers and supervisors, and 2231 health care providers were trained: 237 MO, 1023 BHS and 971 VHW. Refresher training sessions were held between 2016 and 2017 for 828 health care providers, as displayed in Table 2. “I did not know that it was wrong to put something into the mouth while having seizures. We always did that before.” Health assistant attending training in Kyaikhto >> …the shortage of health care providers in Myanmar was found to be a key barrier to strengthening services. Therefore, capacity building of a nonspecialized workforce was deemed the most viable strategy for increasing access to epilepsy care. 30 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Training of trainers and supervisors: 84 specialists (e.g. neurologists, physicians, paediatricians and psychia- trists) were trained as trainers and supervisors in four sessions during 2015 and 2017. This training of trainers and supervisors (ToTS) aimed to build the skills of specialists in training methodologies such as preparing and presenting training sessions, facilitation of role plays and group work, time management, and giving individual feedback. Training of medical officers: Between 2014–2017, 12 new training sessions were conducted where a total of 237 MO were trained. Eight refresher training sessions were held for 106 MO. The training of MO included the following topics: definition, classification and types of seizures and epilepsy; epilepsy in children; assessment, management and follow up of convulsive epilepsy; emergency management of acute seizures; principles of treatment and care including psychosocial support; referral pathways; data collection and reporting. During training of MO, general practitioners (GPs) were encouraged to attend; in total, 40 GPs were trained. The participation of GPs was higher in townships further away from Yangon than those near the country’s largest city. This is possibly due to the working schedule of GPs near Yangon who are in government services during the day and private practice in the evenings. District Year Initial training Refresher training Total MO BHS VHS MO BHS Hlegu 2013 21 97 74 11 107 310 Hmawbi 20 65 85 20 67 257 Kawhmu 2014 5 48 91 3 94 241 Lewe 20 100 65 17 101 303 Thanlyin 47 61 65 30 77 280 Kyaikhto 2015 15 67 63 5 76 226 Nyaungdon 15 68 177 4 106 370 Thahton 18 68 62 16 94 258 Sagaing 2016 22 88 54 – – 164 Taunggyi 29 102 60 – – 191 Nyaunglebin 2017 15 138 73 – – 226 Pantanaw 10 121 102 – – 233 Total 237 1023 971 106 722 3059 Table 2. Number of health workers trained …a total of 237 medical officers were trained. 31 Training of nonspecialist basic health staff: Health assistants, lady health visitors, public health supervisors and midwives are among BHS. Throughout the 5 years of the project, a total of 1023 BHS were trained in 12 sessions, and 722 received refresher training. Compared with the training of MO, the training of BHS put more emphasis on: definition of epilepsy; assessment and management acute seizure including first aid measures; timely referral of people living with epileptic seizure to medical doctors or specialists; ensuring treatment compliance and understand- ing of the side-effects of anti-seizure medications and regular follow up; providing psychosocial support; health education to people living with epilepsy and their families and combating myths and misconceptions; epilepsy with special conditions and epilepsy in children; use of diazepam in acute emergencies and indication for urgent referrals; data collection and reporting. Training of voluntary health workers: Auxiliary midwives and community health workers make up the VHW. 12 new training sessions were conducted for 971 VHW. The training sessions included participants from local NGOs such as members of the Red Cross Society, Myanmar Maternal and Child Welfare Association, and the Myanmar Women’s Affairs Federation. Members of the auxiliary fire brigade were also provided with training in the project townships with the aim of disseminating information about epilepsy and identifying suspected cases for referral to the health facilities, especially in hard-to-reach areas. As a result of the training, the health care providers were equipped with the knowledge and skills to manage epilepsy cases in their respective townships at the community level. Pre-test and post-test training surveys were carried out to test knowledge about epilepsy (Table 3). Paired t-tests were carried out to evaluate the difference in scores from pre- to post-test for each training group; these were found to be highly significant. The participation of traditional medicine practitioners and faith leaders in the training was minimal and mobilizing this group in the epilepsy project is an area for improvement in the future scale up. Category of health provider Number of participants Pre-test* Post-test* % improvement Paired t-test value P-value MO 237 54.4 83.9 54.2% 11.81 < 0.001 BHS 1023 77.2 92.0 19.2% 20.46 < 0.001 VHW 971 65.7 84.0 27.9% 13.59 < 0.001 Total 2231 65.8 86.6 31.7% Table 3. Results of pre- and post-training evaluations by workforce cadre (2014–2017) * Scores are calculated based on a maximum score of 100. >> “I find that using the case demonstration (with actual epilepsy cases) is very effective and now we are more confident in diagnosis of epilepsy, classifying management of epilepsy.” A general general practitioner from Pantanaw township in 2017 training 32 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 . Awareness raising One of the key objectives of the Myanmar Epilepsy Initiative was to develop and disseminate epilepsy IEC materials to improve awareness among public and community groups. The communication strategy included using multiple channels to disseminate key messages on epilepsy and impart information to raise awareness and encourage people living with epilepsy to seek treatment. Public education and promotional materials developed A diverse range of IEC materials were developed for the project targeting the general public to raise awareness about epilepsy and the services available in the community. These included: • One video feature on generalized tonic–clonic epilepsy targeting the general population on epilepsy, symptoms, do’s and don’ts, and first aid measures (2014). • Short public service announcements mainly comprised of overarching key messages on epilepsy targeted at the general population aired since 2014. • Two posters – one general information poster and one on first aid targeting the general population and also family members and teachers including the message against stigma and discrimination. • Three pamphlets – one on general facts about epilepsy, one on first aid directed at the general population and one on epilepsy in women and children targeting women, children and the general population. • A song on epilepsy targeting the general population that contains key messages about epilepsy performed by a nationally recognized singer. • A comic book for middle and high school children providing information on epilepsy developed in 2016. The IEC materials were produced at the beginning of the project in 2014 during a multistakeholder workshop that gathered 37 participants, including five TV programmers, two FM radio station staff, and eight journalists. Private FM radio stations and TV channels such as MRTV 5 and Sky Net channels provided assistance in filming and airing news relating to epilepsy training sessions and workshops and interviews with senior project staff. In addition, advocacy materials, such as T-shirts, bags, key chains and logo tags, were produced, which were distrib- uted during the advocacy sessions in all the project townships and at the workshops during the project period. At the township level, the Myanmar Red Cross Society, Myanmar Maternal and Child Welfare Associa- tion, Myanmar Women’s Affairs Federation and other local NGOs participated in the VHW training and regularly disseminated IEC on epilepsy in their respective townships. The Myanmar Medical Association chapters in townships agreed to disseminate information on epilepsy project activities among people living with epilepsy, family members, department of education personnel especially school teachers, and the general community. In 2016, an educational video (with famous actors and actresses) was developed and aired by government as well as private TV stations providing education on epilepsy, aimed particularly at reducing stigma and discrimination. The Health Education Bureau, under the MoHS, closely collaborated with the project in development and pre- testing of IEC materials and obtaining approval from various departments, as well as ensuring the video could be aired on national TV free of charge. 3 In 2016, an educational video was developed and aired by government as well as private TV stations providing education on epilepsy. 33 34 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Information, education and communication activities Activities were arranged throughout the project’s implementation to raise awareness of epilepsy and enhance access to services. The activities aimed to better support people living with epilepsy and their families, for example, by organizing a support group. Members of the general public were also targeted to share information on epilepsy and reduce stigma and discrimination. Community awareness events: International Epilepsy Day was commemorated annually between 2015–2017. Every year on the second Monday of February people joined together to celebrate and highlight the problems faced by people living with epilepsy and their families. In Myanmar, a wide spectrum of stakeholders from members of parliament, directors of regional and township health departments, village level administrators, local and international NGOs, members of community-based organizations, civil society members, media personnel and the general public participated. These events included health education talks, video presentations and mini-exhibitions. Approximately 930 people attended the events over the 3 years. The service sector was acknowledged as an important place to identify and respond to the needs of people living with epilepsy. In 2017, a health education session on epilepsy was carried out in Kawhmu township at the Hospitality and Catering Training Academy, where staff and 120 students, as well as headmistresses from five primary schools, four middle schools and three high schools, attended the health education session and viewed a mini-exhibition on epilepsy IEC materials. Formulation of an epilepsy support group: In 2017, a mass community awareness-raising event in Yangon aimed to educate the public on epilepsy. The event was attended by people living with epilepsy and their families and offered an opportunity to mobilize them to join the epilepsy awareness and support group. Members of the general public were also targeted to share information on epilepsy and reduce stigma and discrimination. 35 Prior to the event, the Epilepsy Support Group was formed with the parent of a child with epilepsy as chair and secretary. During the event, flyers were distributed with information on where to access services and asking for people to join the support group. A famous film star/ singer was recruited to serve as an ambassador for combating stigma and discrimination against people living with epilepsy. The Epilepsy Support Group aims to promote a brighter future for people living with epilepsy in Myanmar with the following objectives: • To increase understanding of epilepsy and reduce stigma and discrimination through awareness campaigns and education programmes. • To increase access to treatment and care by providing support, referral information, assistance in obtaining access to anti-seizure medications, counselling and advice to people living with epilepsy and their families. • To advocate for the rights of people living with epilepsy and to campaign to eliminate all discriminatory practices and policies affecting them, especially in relation to education/schooling, employment, driving etc. Health education talks: Regular health education talks are held by BHS as part of their outreach service delivery missions. In the project townships, epilepsy was added to the list of routine topics covered by these health education talks. Over the 5-year project, a total of 21 336 health talks were conducted and 286 218 persons were reached (Table 4). District Total number of health talks Estimated number of persons reached Hlegu 2470 35 277 Hmawbi 810 9972 Kawhmu 522 6087 Lewe 3715 82 721 Thanlyin 2897 44 717 Kyaikhto 489 16 859 Nyaungdon 652 6980 Thahton 8251 47 218 Sagaing 760 14 937 Taunggyi 19 1331 Nyaunglebin 751 20 119 Pantanaw* 0 0 Total 21 336 286 218 Table 4. Total number of health talks given by BHS * This township received training in December 2017 and therefore did not have time during the course of the pilot project to implement the awareness raising activities. “Most of the people with epilepsy are not taking proper treatment or they are taking irregular treatment because the drugs are also expensive. It will be of great help to the patients if drugs are provided free by the health department.” Auxiliary midwife from 2015 training 36 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-201736 "Fight against ilepsy initiative" in Ghana | WHO Progra me on reducing th epilepsy treatment gap 201 –2016 37 . Provision of nonspecialized care for epilepsy The epilepsy project activities were integrated into the three levels of the primary health system in Myanmar. At each level, innovative approaches were used to maximize the limited health care workforce and improve access to treatment for people living with epilepsy. • At the township level (i.e. township health depart- ment facilities and hospitals), outpatient depart- ments where MO provide services, a specific time and day was designated for people living with epilepsy to access routine care. • At the RHC level, health assistants were allowed to initiate treatment. • At sub-RHC level, to ensure uninterrupted supply of anti-seizure medications, midwives were given a supply of anti-seizure medications to provide follow- up treatment. Midwives provide community-based health care, conduct health education sessions on epilepsy, case finding, follow-up treatment, report- ing and referral of epilepsy cases. These changes meant that epilepsy services could be provided in the community, closer to people living with epilepsy, rather than solely at the township hospital level. This is significant, as prior to the project, many people living with epilepsy were unable to travel to township hospitals for treatment because of the distance and transportation costs. Procurement, distribution and use of essential anti-seizure medications In order for people living with epilepsy to have access to effective treatment, adequate stocks of anti-seizure medications are essential. The project team coordinated across levels of the health system, with the MoHS, 4 regional health directors and the township MO for inclu- sion of available anti-seizure medications in Myanmar (i.e. sodium valproate and carbamazepine) in their biannual procurement plans in all the project townships. The project made the process of anti-seizure medications procurement more sustainable by providing townships with initial 6-month to 1-year supplies of available medicines and gradually built up mechanisms for the township health departments to procure medicines from the government system themselves before stopping provision from the project. This mechanism has been implemented in 10 townships (excluding the two townships trained at the end of 2017). In 2016, phenobarbital, sodium valproate and carbamaze- pine were designated as first-line anti-seizure medications in the Myanmar National List of Essential Medicines. Throughout much of the project implementation period, phenobarbital was not registered or available in Myanmar and could not be obtained by local procurement, thus, it was procured by WHO to ensure an uninterrupted supply in project townships. Due to advocacy efforts of the project team, the Department of Public Health agreed to purchase phenobarbital locally from the Myanmar Pharmaceutical Enterprise starting in 2018. The project team, Department of Food and Drug Administration and the Department of Public Health negotiated the price for phenobarbital at 26 Kyats (US$ 0.02) per tablet. …prior to the project, many people living with epilepsy were unable to travel to township hospitals for treatment because of the distance and transportation costs. >> 38 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 At the end of the pilot project in 2017, none of the health facilities across the project townships reported stock outs of anti-seizure medications. Between supply from the project and that received through government procurement, anti-seizure medications supply is sufficient to serve the number of people requiring epilepsy treatment. Integration of epilepsy service provision with outreach care The cascade model of training ensured a multidisciplinary and collaborative model of service provision was rolled out in the project townships. In order for epilepsy care to reach people in rural communities that previously did not have access to services, BHS were trained to provide epilepsy care during routine health outreach visits to villages. When BHS consult people living with epilepsy during these outreach visits, they provide follow-up care, health education, psychosocial support, and counselling regarding the importance of medication adherence and potential side-effects. A total of 84 874 outreach visits were conducted in project townships, reaching 2715 people living with epilepsy. From 2016 to 2017 the total number of outreach visits increased by 62% (Table 5) and the number of people living with epilepsy seen on these outreach visits rose four-fold. This is partly due to epilepsy care becoming increasingly embedded in the routine primary health care delivery, more health education sessions to raise awareness, and an emphasis on regular follow up by health care providers at the refresher trainings. Ensuring regular supervision of nonspecialists The model of service provision also required consistent, supportive supervision by the township level health personnel. This included the township and station MO, township health officers and nurses providing supervision to the RHC staff, health assistants and lady health visitors, who in turn supervised midwives at sub-RHC, BHS and VHW in the community. District 2014 2015 2016 2017 Total Hlegu 156 567 1321 1442 3486 Hmawbi 470 3971 3868 3053 11 362 Kawhmu 55 212 245 512 Lewe 2 3252 3458 6712 Thanlyin 0 2339 7758 10 097 Kyaikhto 2134 5416 10 499 18 049 Nyaungdon 3557 1229 4786 Thahton 36 5375 5260 10 671 Sagaing 0 5697 5697 Taunggyi 0 12 440 12 440 Nyaunglebin 1062 1062 Pantanaw 0 0 Total 626 6765 25 340 52 143 84 874 Table 5. Total number of health outreach visits by BHS in 2017 * Where data were unavailable, training had not taken place during these years or was too late to be part of the reporting period. A total of 84 874 outreach visits were conducted in project townships, reaching 2715 people living with epilepsy. 39 The central level project team also conducted quarterly supervision at the project townships (Table 6). In 2015, a total of 35 visits were carried out by the central level project staff: 13 were M&E supervision visits and 22 were supportive technical supervision visits. In 2016, a total of 56 supervisory visits were carried out (18 technical, 38 M&E), which represented an important increase compared with 2015. In 2017, 33 supportive supervisions were conducted by the M&E officer and the township level health department staff covering both technical and administrative matters. It was found that data entry and submission had improved over pre-vious years and data reporting was more regular and timely. During each supervision visit the following issues were reviewed and solutions discussed: • Attrition of trained health care personnel (which remains a problem in many townships) required the addition of five refresher training sessions in 2017. • Improvements in data recording and reporting were observed and need to be maintained through the review of new patient forms, follow-up registers and monthly reports. • Review of treatment provided to some epilepsy patients, leading to the project developing a national framework for epilepsy care in Myanmar which was endorsed by the MoHS. • Review of stocks of anti-seizure medications at health facilities, requisition of anti-seizure medica- tions through the government procurement system, and addressing issues of adherence among people living with epilepsy. • Administrative/management problems, such as townships that need to improve decentralization of epilepsy treatment to rural health facilities (e.g. Thanlyin, Nyaungdon and Taunggyi that have only decentralized to station hospital level). Care pathways and referrals strengthened Care pathways are the routes by which people living with epilepsy access treatment and care. They influence the organization of services and comprise a collaborative system of care, at multiple levels of care and across cadres of the workforce. The project measured referrals from participating facilities to tertiary providers in monthly township report forms to monitor the care pathways for people living with epilepsy in each township. In 2015, there were two referrals to secondary and tertiary levels. By 2016 there were 53 referrals and in 2017 the referrals had increased to 61. These referrals were for management of seizures that could not be controlled by treatment at the township level and some of the cases were paediatric cases. 2014 2015 2016 2017 Total Supervision sessions by central level project team 14 35 56 33 138 Number of monitoring visit by township level supervisory team 8 81 147 225 461 Total 22 116 203 258 599 Table 6. Total number of supervision sessions In 2016, a total of 56 supervisory visits were carried out… >> 40 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 . Monitoring and evaluating the initiative The Myanmar Epilepsy Initiative M&E plan included a pragmatic list of indicators to not only monitor inputs and processes but also coverage and outcomes for people using services. The plan included a management protocol to assess and manage people living with epilepsy, new patient forms, follow-up patient forms, monthly facility forms and a follow-up register (see Annexes 1-3 for more information). These forms were printed and distributed at the beginning of March 2015. A M&E officer was recruited for the project in October 2015, this helped to ensure quality data collection and analyses. The number of primary health care facilities involved in the project that were trained in the use of the manage- ment protocol up to 2017 is shown in Table 7. The M&E officer coordinated data collection with the staff in these health facilities and improved the recording of patient and facility level data. 5 To further integrate epilepsy treatment and care in the government system, it is important to establish epilepsy indicators in routine data collection. A major success of the Myanmar Epilepsy Initiative was coordination with relevant departments under the MoHS for the definitions of epilepsy to be revised and the four minimal indicators for epilepsy to be collected by the routine health management information system (HMIS). Collection of four indicators, (old and new cases, total number of consultations, and referrals to specialists) is feasible at a health facility level and can be used to monitor epilepsy care nationwide. Township State/region/ district/township hospital Station hospital Rural health centre Sub-rural health centre Maternal child health Hlegu 1 3 8 35 1 Hmawbi 1 3 4 27 1 Kawhmu 1 3 4 27 1 Lewe 1 2 7 28 1 Thanlyin 1 2 8 63 1 Kyaikhto 1 1 6 34 1 Nyaungdon 1 1 5 28 1 Thahton 1 1 5 22 1 Sagaing 1 4 7 40 1 Taunggyi 2 4 4 23 2 Nyaunglebin 1 3 6 32 2 Pantanaw 1 4 7 53 1 Total 13 31 71 412 14 Table 7. Health care facilities involved in the project A major success of the Myanmar Epilepsy Initiative was coordination with relevant departments under the MoHS for the definitions of epilepsy to be revised and the four minimal indicators for epilepsy to be collected… 41 42 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Review & next steps Results: – Coverage in all 12 townships – Adequate follow-up – Reduction in seizures – Improvement in quality of life Lessons learned Moving forward: – Commitment from policy-makers – Moving toward universal coverage for epilepsy 43 Contact and effective coverage are two important dimensions of service coverage (45). Contact coverage is a measure of service use, which is the proportion of the target population in contact with services. Effective coverage is a measure of the impact of a programme on patient outcomes, i.e. the proportion of the target population who receive appropriate, effective care. Routine data collected by a programme can sometimes be used to calculate contact coverage, but determining effective coverage requires further information on patient health and functioning outcomes (46). The first coverage indicator that was routinely monitored by the Myanmar Epilepsy Initiative was contact with epilepsy services. In the absence of population-represen- tative surveys in all project townships, prevalence data were estimated from surveys conducted in six townships and data were extrapolated on the number of epilepsy cases which might be in need of services. Table 8 shows the coverage of epilepsy care estimated from the number of new cases that gained access to care since the project inception. The project was successful at increasing contact coverage in the 12 implementing townships, from 2% at baseline to 47% in 2017. The results of the Myanmar Epilepsy Initiative have not only been evaluated on the activities carried out by the team, but also in terms of coverage in project townships. The phased approach to implementing the project in townships, states/regions over the 5-year period and advocacy by the project leadership led to a gradual increase in the number of health facilities providing quality epilepsy care, better awareness in the community, improved M&E across implementation sites and growing political commitment to improve epilepsy treatment and care. Coverage in all 12 townships Service coverage is a comprehensive concept expressing the ability of a health service to interact with the target population who should benefit from the service (45). The process to improve service coverage includes a variety of factors, such as availability of resources and workforce, distri- bution of facilities, supply logistics, and people’s attitudes toward health care. Improving service coverage is essential for scaling up effective, equitable services for people living with epilepsy and can guide quality improvement of existing services (46). However, estimating service coverage requires substantial technical, human and financial resources, which are not necessarily available within routine health informa- tion systems. Estimates of service coverage should include data on new and follow-up cases, but because some health information systems do not provide this information, coverage for epilepsy is often underestimated. Results Contact coverage (new cases) 2013 2014 2015 2016 2017 Average* 2.2 46.8 35.9 41.6 46.9 Table 8. Contact coverage by year of the project * Measured as the proportion of people who accessed services in project townships based on the estimated prevalence of epilepsy in the township population (see Table 1 for more information on estimated prevalence). The project was successful at increasing contact coverage (by new cases) in the 12 implementing townships, from 2% at baseline to 47% in 2017. >> 44 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 40.020.0 7.8 66.6 78.7 97.8 102.3 80.060.0 100.0 120.0 Hlegu 2013 2014 2015 2016 2017 Hmawbi 2013 2014 2015 2016 2017 Kawhmu 2013 2015 2016 2017 Kyaikhto 2013 2015 2016 2017 Lewe 2013 2015 2016 2017 Nyaungdon 2013 2015 2016 2017 Thahton 2013 2015 2016 2017 Thanlyin 2013 2015 2016 2017 Sagaing 2013 2016 2017 Taunggyi 2013 2016 2017 Nyaunglebin 2013 2017 Pantanaw 2013 2017 0 2.7 66.4 71.1 102.5 1.3 19.1 35.3 53.0 0.5 19.2 28.6 41.0 1.6 16.9 41.7 53.9 7.1 31.4 44.3 57.9 2.6 24.4 33.0 50.7 0.8 19.2 35.2 0.0 5.2 0.0 4.8 0.0 4.7 15.8 2.3 27.0 31.0 40.5 40.3 Fig. 8. Percentage of contact coverage (by new cases) – by year and township 45 successful in improving access to treatment and continued care for people living with epilepsy. When comparing data across townships (Annex 4), an increase in new cases identified was observed in some townships during the first year of implementation, as activities such as training of health care providers and awareness raising were implemented. In some townships, decreases in subsequent years of the project can be explained by most new cases having been identified. In Hmawbi, a township near the main city of Yangon and with the military hospital in its jurisdiction, new cases reduced in 2017 because a higher number of people living with epilepsy were being treated by specialists in private practice. Follow-up consultations increased each year of the project, as shown in Annex 4. Training in Nyaunglebin and Pantanaw townships was conducted in late 2017 and therefore the number of new cases is lower, and follow- up consultation data were unavailable. The project was implemented in townships gradually in a phased approach, and contact coverage data based on new cases are presented in Fig. 8. The population data used to calculate coverage are based on the annually produced township health profiles. The population has increased in some townships, thus reducing the estimated coverage (e.g. Hwambi). Coverage was lower in Sagaing township due to its geographic location and difficulty in accessing health facilities. An unusual finding is that the coverage exceeded 100% in Hlegu and Kawhmu in 2017. This may be explained by the mobile population in Hlegu. In Kawhmu, people living with epilepsy from the neighbour- ing townships of Twante, Kungyankone and Dedaye sought free services in Kawhmu. Fig. 9 presents the number of new epilepsy cases and follow-up consultations conducted annually under the Myanmar Epilepsy Initiative. Continued care for people living with epilepsy is important, so that health care providers can monitor their progress in terms of seizure reduction and adherence to medicine. This shows the project has been Fig. 9. Total number of new cases and follow-up consultations 2014-2017 0 1000 2000 3000 4000 5000 6000 7000 8000 9000 10000 2017201620152014 Follow-up visitsNew cases 273 572 471 2 604 475 6 042 490 8 810 >> 46 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-201746 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 nat-ka-daw (similar to faith healers) and astrologers to please the “spirits causing the ailment”. When her parents took her to the RHC involved in the project, she was diagnosed with epilepsy (childhood onset) probably due to a central nervous system infection. She was started on phenobarbital 30 mg hs. After about 3 months of regular treatment her seizures were reduced by more than half and her general condition improved (i.e. she had less hyperactivity and was more attentive). This is an example of how the project is helping to provide services for people living with epilepsy and support their families to access quality treatment and care. When Ma Shwe Zin Moe, a 16-year-old female adolescent, went to the RHC, it was noticed that she had impaired physical and mental development. She had a history of seizures starting at the age of three, which was then accompanied by fever. She exhibited slow growth, dysphasia, was unable to walk without support and suffered from three to four seizures per month (unprovoked). Her attention wandered and she was hyperactive. Clinically, she had weakness in her lower left limb and she was significantly disabled. Ma Shwe Zin Moe’s parents had taken her to several traditional medicine practitioners, both in her village and nearby, and also conducted rituals as instructed by various Living with epilepsy in Myanmar 47 adherence is difficult to measure in routine consultations and therefore the project team adopted adequate follow- up as a proxy indicator for adherence. The operational definition required that a person with epilepsy returned to the health facility for follow-up treatment at least nine times within a 12-month period. Data on adequate follow-up was analysed from January 2017 to December 2017 in four townships. The four townships were selected based on two primarily using sodium valproate and carbamazepine (Hlegu – 2014 and Thanlyin – 2015), and two townships which primarily used phenobarbital (Kawhmu – 2015 and Kyaikhto – 2015). Table 10 shows that among the people living with epilepsy coming for follow-up visits over 1 year, those who made at least nine visits or 75% regularity, were considered as having adequate follow-up. Reduction in seizures Freedom from seizures is the ultimate goal of epilepsy treatment. It reduces morbidity and mortality, prevents sudden death from epilepsy, and improves QoL. The total number of new and follow-up cases are shown in Table 9, by age group and sex. The project identified 1709 new cases of epilepsy. There was a slightly higher number of males and a majority of cases were in the adult age category of 19–60 years old. Effective coverage is a measure of the impact of a project on patient outcomes, i.e. the proportion of the target population who receive appropriate, effective care that benefits people living with epilepsy. The impact of the project for people living with epilepsy can be seen in key indicators such as: adequate follow-up, reduction of seizures and improved QoL. Adequate follow-up Adherence to medication is defined as taking the exact prescribed amount of medicine at the precise times of every day for an extended period of time (47). This is important because medications will only work if they are taken regularly. When doses are missed or the medicine is taken irregularly, people living with epilepsy are at greater risk of having seizures and adverse effects. However, medication Age categories Total 0–12 13–18 19–60 >60 New cases 1709 Male 184 109 589 39 921 Female 145 113 500 30 788 Follow-up consultations 18 028 Male 1470 1141 6378 438 9427 Female 1188 1216 5812 385 8601 Table 9. Number of new cases and follow-up consultations by age and sex 2014-2017 Township Estimated cases of epilepsy New cases Follow-up cases in 1-year period Number of cases with 75% follow-up Rate of adequate follow-up Hlegu 335 352 175 85 49% Thanlyin 193 97 72 36 50% Kawhmu 148 154 97 61 63% Kyaikhto 237 129 78 44 56% Table 10. Adequate follow-up in Hlegu, Thanlyin, Kawhmu and Kyaikhto townships 48 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Participants were interviewed using pre-tested, semi- structured questionnaires with health-related QoL items modified from the Quality of Life in Epilepsy Inventory, 40-item scale (48). The adapted questionnaire included items on epilepsy effects (memory, physical effects, cognitive effects of medication) mental health (energy, depressive symptoms, overall quality of life) and social functioning. Trained health assistants from the University of Community Health in Magwe carried out the survey. The total number of participants in the evaluation was 72. The majority of people were between the ages of 20 and 40 years old, living in rural areas and most were female (56.9%). Most people only had primary level education, which could be possibly related to early drop out from school. The evaluation revealed the following findings: • QoL scores significantly increased after treatment, showing the effectiveness of the care received. Mean (± standard deviation) QoL scores before 31.56 (± 14.38) and after 49.29 (± 12.89) treatment, (p < 0.001). • Before treatment, people living with epilepsy living in rural areas were found to be five times more likely to have a low QoL score than those living in urban areas; potentially related to the difficulties in accessing care. The findings of this evaluation are important when considering the impact that epilepsy has on quality of life, particularly for people who may be at risk of social isolation. The results show that with access to treatment, QoL may significantly improve. However, this evaluation assessed QoL in the short term (2 weeks later) and therefore longer-term follow-up evaluations are required to better understand the impact of treatment. Calculating seizure freedom rates relative to a comparator is an ideal way to document efficacy of anti-seizure medications and report on the impact of treatment for people living with epilepsy (22). By the end of 2017, data on seizure reduction, measured as at least a 50% reduction during follow-up visits were available in 10 project townships (Fig. 10). Seizure reduction was observed in 36% of follow-up visits across the 10 townships. Improvement in quality of life With appropriate treatment, more than three quarters of people living with epilepsy could lead normal lives, free of seizures. This has the potential to improve QoL by helping people to regain employment or attendance in school, reduce their social isolation and enhance independence. For pragmatic reasons of collecting data in routine consultations, QoL was assessed by one subjective item in the follow-up consultation form asking people living with epilepsy if they felt their QoL had improved since starting treatment. In 2015, the range of people who indicated a positive improvement in QoL ranged from 28.6% (in Kyaikhto) to 98.3% (in Hmawbi). In 2017, improvement of QoL among the people living with epilepsy coming for follow-up visits ranged from 47.8% (Nyaungdon) to 90.8% (Kyaikhto), with an average improvement of 78.2%. The slight reduction seen in Hlegu and Kawhmu is due to the marked increase in number of new cases in these townships. Additional data was collected in Hlegu township from October to November 2016 for better understanding of issues related to quality of life. All people living with epilepsy who accessed services and received treatment in the township health facilities during this 1-month period were invited to participate in the evaluation. QoL was assessed before taking anti-seizure medication, and 2 weeks after starting treatment. 49 Fig. 10. Percentage of follow-up visits with at least 50% seizure reduction reported 50.7 53.5 36.6 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Hlegu 2015 2016 2017 Hmawbi 2015 2016 2017 Kawhmu 2015 2016 2017 Kyaikhto 2015 2016 2017 Lewe 2015 2016 2017 Nyaungdon 2016 2017 Thahton 2015 2016 2017 Thanlyin 2015 2016 2017 Sagaing 2016 2017 Taunggyi 2016 2017 Nyaunglebin 2017 Pantanaw 2017 0 25.2 38.2 35.7 12.7 33.4 23.5 44.4 45.4 54.9 17.1 21.5 0.3 47.5 39.8 61.0 55.5 43.7 0 0 0 42.5 34.3 43.6 46.1 17.4 20.5 50 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 BHS for identification of convulsive seizures and epilepsy; health assistants trained to initiate treatment with phenobarbital starting in 2016; and VHWs to recognize symptoms, disseminate health education on epilepsy, provide first aid and refer for treatment. Attrition of trained health care providers remained a problem in many townships throughout the project. Activities to mitigate this risk included refresher training sessions to address staff turnover in implementing health facilities, as well as training workers outside the facilities, for example, those based in communities, such as auxiliary midwives. The culturally adapted mhGAP training materials enhanced various categories of health workers’ under- standing and ability to care for people living with epilepsy. These materials are an important resource both in Myanmar and may be adaptable to other countries. Phased and flexible approach People living with epilepsy in Myanmar face geographic and economic challenges to accessing services (e.g. living in hard-to-reach areas and the cost of transportation). Poor adherence to anti-seizure medication also resulted from Stakeholder participation Engagement by a range of stakeholders was been instrumental to the success of the project. The members of the PCC provided expertise and experience across a variety of disciplines such as neurology, public health, MoHS administration, academia/research. The PCC facilitated coordination across central, state/regional and township levels. This coordination was key to the success of the project in achievements such as model integrated epilepsy care across specialist and nonspecialist cadres of the workforce. Policy-maker commitment Commitment from the MoHS was essential both for project implementation and for the long-term sustain- ability of epilepsy care in Myanmar. During project implementation, the MoHS facilitated the process of anti-seizure medications supply through the government procurement system, thus enabling townships to provide free medication to people living with epilepsy in the community. Key policy achievements resulting from the project were the inclusion of epilepsy in the Myanmar National Health Plan 2017–2021, as part of the NCD programme, and the publication of the National Frame- work for Epilepsy Care in Myanmar, adopted in 2017. Care in nonspecialized settings A key success of this project has been in training workers across several categories of the health system. This included specialists as trainers and supervisors; MO to provide regular diagnosis and treatment in townships; Lessons learned 50 A key success of this project has been in training workers across several categories of the health system. 51 difficulties in accessing services. This was addressed by using a community-based approach to service delivery that was gradually rolled out across the 12 townships. The approach reached township health facilities and RHC/ sub-RHC. By training health assistants and midwives who also provided outreach care, the project made epilepsy services more accessible and affordable. Multi-pronged model of awareness raising The widespread awareness raising activities, from township to RHC level, was implemented concurrently with improvements in service provision, thus increasing the number of people accessing treatment and care. The project successfully involved school teachers, local administrative bodies, NGOs, the service sector and even national celebrities to mobilize the community around epilepsy and break down stigma. The formation of the epilepsy support group aims to further improve the social participation and QoL of people living with epilepsy. Supervision, monitoring and evaluation Supportive supervision and regular M&E were essential to the success of the project. Both clinical and administrative logistics need to be monitored to ensure an adequate supply of medicines and the quality of the services provided. In some townships, treatment guidelines were not properly followed and multi-drug therapy was prescribed. Thus, more technical support and supervision was organized. The project also developed the National Framework for Epilepsy Care in Myanmar which has been endorsed by the MoHS. The success of these activities was reflected in the improvement of data collection at the health facility level and its integration with government HMIS. The achieve- ment of routinely collecting data on epilepsy indicators will inform the future scale up of services and reduce the burden that limited health care places on providing quality treatment and care. 51 52 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Epilepsy in Myanmar 53 all levels of the health care system. It can be applied in other states/regions and townships outside the project sites to enhance the quality of services. To develop the national framework a core group from the Department of Neurology and other public health experts were selected to draft and revise. An initial workshop in August 2016 was conducted in Nay Pyi Taw, the capital, to engage with policy-makers and present the draft. The final version was launched in December 2017. Since 2014, the subject of epilepsy has been included in the undergraduate medical curriculum of University of Nursing, Yangon. Epilepsy has also been included in the in-service township medical training course conducted at the training school in Lewe. Coordination was done with the Rector of the University of Community Health in Magwe in 2016, to insert epilepsy in the health assistant training curriculum beginning in 2017. Moving toward universal coverage for epilepsy The Myanmar Epilepsy Initiative demonstrated a model that was effective in reducing the epilepsy treatment gap and expanding coverage. WHO and the MoHS are committed to building on the lessons learned and evidence generated from the pilot project, which will now be applied in a scale up programme to ensure the long-term sustainability of accessible, affordable and quality care for epilepsy in Myanmar. The approach to scaling up epilepsy care in Myanmar will translate the policy and decentralized service achieve- ments from the pilot project into meaningful and sustain- able gains toward universal health coverage. At a scale of 12 townships, the pilot project improved epilepsy coverage from 2% to 47% in just 4 years of data collection. Over the next 4 years, the scale up programme will be gradu- ally phased to cover all townships in five states/regions of the country (an additional 73 townships). The programme will also continue to monitor and evaluate the pilot townships in an additional four states/regions for a total of 85 townships reached by the end of 2021. Commitment from policy-makers Successful advocacy during the Myanmar Epilepsy Initiative resulted in the inclusion of epilepsy under the neurological disorders as one of the NCDs in the National Health Plan (2017–2021). This major milestone represents a commitment by the MoHS to ensure implementation of epilepsy services. The Public Health Department and the PCC coordinated with the Myanmar Pharmaceutical Industry for local production and purchase of phenobarbital. Phenobarbital, sodium valproate and carbamazepine are classified as first- line medicines under Myanmar’s National List of Essential Medicines (2016). The project was also able to institutionalize the procurement of anti-seizure medications by township health departments in their biannual procurement system, thereby ensuring a sustainable supply within communities. Political commitment has been strong; as a result, the MoHS has procured sufficient quantities of anti-seizure medications for 2018. The National Framework for Epilepsy Care in Myanmar has been approved by the MoHS. This framework provides a model of epilepsy care for the country at Moving forward The Myanmar Epilepsy Initiative demonstrated a model that was effective in reducing the epilepsy treatment gap. >> 54 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 The scale up programme will cover 85 townships across the country. All 12 townships in the pilot project will continue to receive supervision and M&E. The programme will be scaled up to cover all townships in five states/ regions, an additional 73 new townships. • Year 1: Mon State (two pilot and eight new townships) • Year 2: Kayin and Kayah States (14 new townships) • Year 3: Bago Region (one pilot and 27 new townships) • Year 4: Ayeyarwaddy Region (two pilot and 24 new townships). The significant achievements of the initial pilot project in Myanmar led to 47% contact coverage (by new cases) in implementing areas. However, many people living with epilepsy in Myanmar still do not have access to proper and adequate care. Continuing to increase access to quality epilepsy care is therefore essential. Given the size of the country, with a population of 53.8 million, successful nationwide scale up for epilepsy care will only be possible through an innovative, decentralized implementation model. The scale up programme is a unique opportunity to test this model’s effectiveness in responding to the burden of epilepsy and improving the QoL for people living with epilepsy in Myanmar. As global attention is shifting toward NCDs and universal health coverage, this programme will also serve to test intermediate nationwide scale up to integrate NCD frameworks into primary care. Universal health coverage means that all people receive the quality, essential health services they need, without being exposed to financial hardship (49). This requires an efficient health system that provides the population with access to good quality services, trained health care providers, medicines and technologies, while at the same time reducing out-of-pocket costs. In order to achieve universal health coverage for epilepsy in Myanmar, the following priorities will be strengthened: • Affordability – a system for ensuring health services reach people in rural communities so they do not suffer financial hardship when accessing care for epilepsy. • Availability of essential anti-seizure medications and technologies to diagnose and treat epilepsy. • Sufficient numbers of well-trained, motivated health workers to provide good quality epilepsy services to meet people’s needs based on the best available evidence. • Actions to address the social impact of epilepsy by raising awareness and knowledge of epilepsy among the general public, and reducing the social exclusion of people living with epilepsy and their families. A cascade model of training (Fig. 11) will be adopted where the central level will provide training to state/ regional level trainers, both in medical care (specialists in hospitals and public health sectors) and NCD focal points at state/regional levels taking responsibility for the imple- mentation. By strengthening and supporting the regional level to roll out and supervise project activities, the scale up programme will ensure local buy-in and ownership. Central level project staff will provide technical support, training, M&E and supportive supervision. 55 Fig. 11. Proposed cascade model of training for epilepsy care MASTER TRAINERS (Neurologists + trainers) Voluntary Health Workers (Community level) TRAINERS (Specialists) TRAINERS (Township training team) MO, GP (Primary care) Basic Health Staff (except MO, primary care) ToTS Training/Refresher course Central / State / Region 56 1. Fiest KM, Sauro KM, Wiebe S, Patten SB, Kwon C, Dykeman J, et al. 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Geneva: World Health Organization and World Bank Group; 2017. 58 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Annex 1. Township .................................................................................... Name of RHC ............................................................................. Date ............................................................................................ Patient ID Number (assign now) ................................................ 1. Name ............................................................................................................................................................................................... 2. Age .................................................................................................................................................................................................. 3. Sex ................................................................................................................................................................................................... 4. Race & Religion ................................................................................................................................................................................ 5. Occupation ...................................................................................................................................................................................... 6. Address ............................................................................................................................................................................................ .......................................................................................................................................................................................................... 7. Marital status Unmarried Divorced / Separated Married Widow / Widower 8. Education level and literacy Illiterate Can read and write Primary school Middle school High school Graduate 9. Accompanying person to clinic Parents / Siblings / Husband / Wife / Relative / Friends / Others ................................................. 10. Entry Type Self-referral By family / friend As an emergency By basic health staff Faith healer Traditional medicine practitioner 11. Seizure-related history Age at first seizure .......................................................................................................................................................................... Number of seizures in last 12 months ............................................................................................................................................. Date of last seizure ......................................................................................................................................................................... 12. Has the patient received treatment in the past for seizures? Yes No (If no, proceed to no. 15) 13. Seek treatment from: Doctor Traditional medical practitioner Faith healer Other .................................... 14. Is the patient currently on medication? Yes No Name and dosage of medications ................................................................................................................................................. Duration of taking medication ........................................................................................................................................................ Sample new patient data form 59 15. Family history of epilepsy? Yes No 16. Any other neurological conditions? Yes No (e.g. encephalitis, stroke, brain tumor) 17. Head and brain injuries Yes No 18. Drinks alcohol? Yes No 19. Use narcotics? Yes No 20. Past significant medical history ...................................................................................................................................................... 21. Regularly taking medicines ............................................................................................................................................................. 22. Drug allergies ................................................................................................................................................................................. 23. Are you able to go to school? Yes No 24. Are you able to go to work? Yes No 25. Are you able to carry out daily household tasks? Yes No 26. Are you satisfied with your life situation? Yes No Relevant supplementary information (e.g. any social support needs, referral to support groups, etc.): .............................................. .............................................................................................................................................................................................................. .............................................................................................................................................................................................................. Treatment/ Management Plan 1. Diagnosis ......................................................................................................................................................................................... 2. Medication prescribed (name of drug, strength, dosage adnd duration) ........................................................................................ .......................................................................................................................................................................................................... .......................................................................................................................................................................................................... 3. Referral made Yes No 4. Epilepsy education provided during this session? Yes No Prescriber signature ............................................................. Name ............................................................. Rank ............................................................. 60 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 N o. Pa ti en t ID nu m b er N am e A ge Se x A dd re ss N o .o f vi si t in th is m o nt h D at e N o . o f se iz u re s si n ce la st v is it R ed u ct io n in s ei zu re f re q u en cy A ny t re at m en t fr o m a no th er ca re p ro vi de r? A ny s id e- ef fe ct s o n cu rr en t m ed ic at io n? H av e yo u m is se d ta ki ng y o ur m ed ic at io n si nc e la st v is it? Ye s N o Ye s N o Ye s N o Ye s N o se iz ur e fr ee 50 % re d uc ti o n < 3 d ay s > 3 d ay s Annex 2. Sample follow-up consultation form 61 H as s ei zu re co nt ro l im pr o ve d ? C ho o se o nl y o ne A re y o u ab le to d o da ily ho us e- ho ld ta sk s? H as y o ur qu al it y of li fe im pr o ve d si nc e tr ea tm en t? C ha ng e in m an ag e- m en t p la n C ha ng e in di ag no si s R ef er ra l m ad e (I f ye s, s p ec it fy in r em ar ks ) Pr es cr ip ti o n (N am e an d st re n g th o f m ed ic in e, D o se , d u ra ti o n) N ex t ap p o in t -m en t A m o u nt o f m ed ic in e g iv en Re m ar ks A re y o u ab le to w o rk ? A re y o u ab le to g o to sc ho o l? Ye s N o Ye s N o Ye s N o Ye s N o Ye s N o Ye s N o Ye s N o Ye s N o PB V PA C BZ 62 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 Annex 3. Sample monthly report form To be filled in by a facility staff member once a month. Date: ....................................................... Township: ..................................................... Facility: ..................................................... Reporting month /year ............................ Information on epilepsy cases seen by age and sex: Age group New cases Old / follow up cases* Total Male Female Male Female Male Female 0-12 years 13-18 years 19-60 years >60 years Total *the number of patients attending the facility for follow-up care, not the number of follow-up appointments. 1. Total number of patients sent to or referred for management at other facility: ............................... 2. Number of seizure free patients: ........................... 3. Number of patients with 50% reduction in seizure: .......................... 4. Number of patients with side-effects on current medication Yes ( ) No ( ) 5. Number of patients missed taking medication: No missing dose ( ) < 3 days during 2 weeks ( ) < 3 days during 2 weeks ( ) 6. Number of patients able to go to work Yes ( ) No ( ) 7. Number of patients able to go to school Yes ( ) No ( ) 8. Number of patients able to do housework Yes ( ) No ( ) 9. Number of patients whose QoL improved since treatment Yes ( ) No ( ) 63 Supervision of non-specialist staff Number of monitoring visits by district (site) coordinator: .......................... Number of monitoring visits by National Coordination Committee representatives: .......................... Outreach provision/home visits Total number of outreach clinics/services that included epilepsy services: ........................................... Total number of patients with epilepsy seen at outreach clinic/services: ............................................ Total number of epilepsy related talks given: .............................. Estimated number of audience: ...................................... Anti-epileptic medicines Medicine Continuously Available* Female Old / follow up cases* Female Comments (If shortage occurred, no. of days without medicine and why the shortage occurred. If new stock received, details on when and from where) Yes/No Sodium valproate (200mg) Carbamazepine (200mg) Phenobarbital (30mg) Phenobarbital (60 mg) Inj. Diazepam (10mg) Other (specify medication and dosage) *Continuously available refers to whether a category of medicine was available every day in the month. If there were 1 or more entire days where stock level was zero, then the medicine was not continuously available. 64 Myanmar Epilepsy Initiative | Piloting the WHO Programme on reducing the epilepsy treatment gap 2013-2017 10050 183 57 74 38 200150 Hlegu 2014 2015 2016 2017 Hmawbi 2014 2015 2016 2017 Kawhmu 2015 2016 2017 Kyaikhto 2015 2016 2017 Lewe 2015 2016 2017 Nyaungdon 2015 2016 2017 Thahton 2015 2016 2017 Thanlyin 2015 2016 2017 Sagaing 2016 2017 Taunggyi 2016 2017 Nyaunglebin 2017 Pantanaw 2017 0 94 10 50 43 41 45 86 47 62 38 60 31 92 52 55 42 27 28 16 18 20 48 99 95 90 19 45 4 New cases and follow-up consultations per township Annex 4. 65 302 1012 1276 1452 1600140012001000800600400200 Hlegu 2014 2015 2016 2017 Hmawbi 2014 2015 2016 2017 Kawhmu 2015 2016 2017 Kyaikhto 2015 2016 2017 Lewe 2015 2016 2017 Nyaungdon 2015 2016 2017 Thahton 2015 2016 2017 Thanlyin 2015 2016 2017 Sagaing 2016 2017 Taunggyi 2016 2017 Nyaunglebin 2017 Pantanaw 2017 0 409 950 955 63 479 701 108 623 1277 102 357 447 126 790 1017 146 438 574 15 0 3 226 254 888 270 638 872 1258 Total number of follow-up consultations per township
Myanmar Epilepsy Initiative The Myanmar Epilepsy Initiative was implemented through a collaboration between three-levels of WHO--headquarters, South-East Asia Regional Office, the Country Office for Myanmar--and the Ministry of Health and Sports. It is under the framework of the WHO Programme on reducing the epilepsy treatment gap. This report documents the successes achieved in increas- ing the epilepsy coverage by improving access to epilepsy care in primary health care services. It presents the lessons learned from the Myanmar Epilepsy Initiative and demonstrates the feasibility of scaling up epilepsy services in low-resource settings. Myanmar Epilepsy Initiative, Department of Neurology, Yangon General Hospital. Bogyoke Aung San Road, Latha Township, Yangon. 11131 Email: mepilepsyi.who@gmail.com