9

Next Steps and Recommendations

People with epilepsy face a number of challenges, from living with seizures and comorbidities to dealing with side effects of treatments and the increased chance of early death. They encounter a health system that does not consistently provide care that is accessible and of high quality and value, and their care is poorly coordinated among health care providers and across health care and community services. To provide high-quality care, the health professionals who care for people with epilepsy need to know more about epilepsy, its diagnosis, and its treatment and management, as well as its comorbidities and the risk of premature death. Given the range of effects that epilepsy has on quality of life, people with epilepsy and their families often need a variety of community services, but work remains to ensure that these services are consistently available and evidence based. Furthermore, people with epilepsy and their families have significant information needs about epilepsy and its management, which must be appropriately communicated and tailored to their specific situations (e.g., age, gender, cultural background, literacy level). Finally, many people with epilepsy continue to confront stigma, which results from society’s limited awareness and understanding of epilepsy. Underpinning all of these challenges are significant gaps in information about the number of people who have epilepsy, the health care and other services they use, and opportunities for prevention of epilepsy and its range of consequences.

Given the current gaps in epilepsy knowledge, care, and education, the committee believes there is an urgent need to take action—across multiple dimensions—to improve care and services for people with epilepsy and their families. With this goal in mind, the committee examined the available



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9 Next Steps and Recommendations P eople with epilepsy face a number of challenges, from living with seizures and comorbidities to dealing with side effects of treatments and the increased chance of early death. They encounter a health system that does not consistently provide care that is accessible and of high quality and value, and their care is poorly coordinated among health care providers and across health care and community services. To provide high-quality care, the health professionals who care for people with epilepsy need to know more about epilepsy, its diagnosis, and its treatment and management, as well as its comorbidities and the risk of premature death. Given the range of effects that epilepsy has on quality of life, people with epilepsy and their families often need a variety of community services, but work remains to ensure that these services are consistently available and evidence based. Furthermore, people with epilepsy and their families have significant information needs about epilepsy and its management, which must be appropriately communicated and tailored to their specific situa- tions (e.g., age, gender, cultural background, literacy level). Finally, many people with epilepsy continue to confront stigma, which results from so- ciety’s limited awareness and understanding of epilepsy. Underpinning all of these challenges are significant gaps in information about the number of people who have epilepsy, the health care and other services they use, and opportunities for prevention of epilepsy and its range of consequences. Given the current gaps in epilepsy knowledge, care, and education, the committee believes there is an urgent need to take action—across multiple dimensions—to improve care and services for people with epilepsy and their families. With this goal in mind, the committee examined the available 425

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426 EPILEPSY ACROSS THE SPECTRUM evidence on surveillance, epidemiology, prevention, health care, community services, and education programs and campaigns and then developed rec- ommendations and priorities for further research to improve these fields and the programs relevant to epilepsy. The following evidence-based recom- mendations aim to present realistic, feasible, and action-oriented steps that a variety of stakeholders can take to enable short- and long-term improve- ments for people with epilepsy. The research priorities provide directions for further developing the evidence base. INCREASING THE POWER OF DATA AND PREVENTING EPILEPSY Ideally, a coordinated and comprehensive surveillance system for the epilepsies would collect data in several ways. To shed light on national trends and patient outcomes, surveillance would be longitudinal and nationally representative, enabling subgroup analysis by epilepsy type, population characteristics, and environmental factors. The nation’s data collection efforts should be sufficiently robust to support active research projects on specific topics, but large amounts of data also can be collected passively, including through the increasing use of electronic health records, where well-designed databases can be mined for new insights. Given the ambition of this goal and the current economic environment, the committee has identified several priority areas that need attention, in order to improve the collection and utilization of epilepsy data over time: • Surveillance data must be up to date, representative of the U.S. population, and collected using standardized methods to ensure validity and comparability across studies. • Multiple data sources have to be linked to capture all of the neces- sary data on people with epilepsy and to avoid duplicate counting. New data sources, including those that may develop under health care reform, need to be reviewed for their potential to contribute to an understanding of epilepsy. • Once more robust data are available, analyses should be performed to determine overall incidence, prevalence, health disparities, ser- vices use and costs, quality of and access to care, risk factors, comorbidities, health status, and quality-of-life outcomes, as well as data for specific subgroups. A variety of efforts is needed to accomplish comprehensive surveillance of the epilepsies, close current knowledge gaps, and adequately inform policy makers, public health agencies, health care providers, and the general public. Coordinated action on multiple fronts will ensure the collection of epilepsy-related data from a range of data sources.

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427 NEXT STEPS AND RECOMMENDATIONS The strengthened usefulness and diversity of data, as described above, would facilitate the identification of risk factors for epilepsy, comorbidities, and adverse events. Risk factor identification is an important first step in designing programs to prevent epilepsy and its most serious consequences. At present, many research questions and gaps remain where more complete information could provide a sound basis for prevention, including in public health, clinical care, education programs, and community efforts. RESEARCH PRIORITIES FOR IMPROVING Box 9-1 SURVEILLANCE AND PREVENTION To improve surveillance and prevention of epilepsy and its consequences, the following areas should be considered priorities for future research: • tudies to identify effective interventions for epilepsy accompanied by S mental health comorbidities • tudies that test whether treatment of comorbid mental health conditions S ameliorates adverse outcomes • ase-control studies of risk factors for injuries, suicide, status epilepticus, C and sudden unexpected death in epilepsy (SUDEP) • opulation-based studies using existing data resources that have included P epilepsy, such as the National Survey of Children’s Health • tudies to examine the capacity of data systems to link seizure medication S use and birth outcomes • ontinued research on the risk factors for epilepsy of unknown, genetic, C or presumed genetic causea • tudies on the directionality of the relationship between epilepsy and its S comorbidities, risk factors for developing an epilepsy comorbidity, and prognosis of epilepsy in people with comorbidities present before the onset of epilepsy • longitudinal study that examines epilepsy’s outcomes (for example, a A study of cognition in people with different syndromes, seizure types, and seizure frequencies that includes a sufficient number of older adults to enable studies of risk factors for cognitive deterioration) • ong-term prospective studies that examine the effects of epilepsy sur- L gery on cognitive function and that include appropriate control groups • tudies or analyses that inform new approaches to randomized controlled S trials in epilepsy, in order to minimize the time spent on placebo or on a study drug that is ineffective and thus minimize the risk for SUDEP • tudies that develop and evaluate educational programs to improve the S knowledge of coroners and medical examiners about SUDEP and other epilepsy-related deaths • valuation of behavioral interventions on health outcomes and quality of E life for people with epilepsy • evelopment of screening methods and criteria to identify children with D epilepsy and cognitive comorbidities through the use of educational records aPreviously known as idiopathic or cryptogenic.

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428 EPILEPSY ACROSS THE SPECTRUM RECOMMENDATION 1 Validate and Implement Standard Defini- tions and Criteria for Epilepsy Case Ascertainment, Health Care and Community Services Use and Costs, and Quality-of-Life Measurement The Centers for Disease Control and Prevention (CDC), in collabo- ration with professional organizations (e.g., the American Epilepsy Society [AES] and International League Against Epilepsy [ILAE]) and other federal entities, including the Centers for Medicare and Medicaid Services, Department of Defense, Department of Veterans Affairs, and National Institutes of Health (NIH), should fund demonstration proj- ects to validate and implement standard definitions for epilepsy case ascertainment, health care and community services use and costs, and measures of quality of life for use in different data collection systems and for different specific objectives. Once validated, these definitions and criteria should be adopted by funding agencies and used in surveil- lance and research, which is the basis for planning and policy making. RECOMMENDATION 2 Continue and Expand Collaborative Sur- veillance and Data Collection Efforts The CDC should continue and expand its leadership in epilepsy surveil- lance and work with state and local public health researchers, academic researchers, and other relevant stakeholders (including other agencies within the Department of Health and Human Services). Surveillance efforts should be funded that use large, representative samples to deter- mine the overall incidence and prevalence of epilepsy—and mortality— over time as well as in specific populations (e.g., different types of epilepsy, ages, genders, races/ethnicities, socioeconomic statuses). Data collection efforts should include the following: • opulation health surveys should expand their questions about P epilepsy, its comorbidities, and health care services use and in- clude these questions more frequently and consistently. • xisting registries for comorbid conditions, such as the Surveil- E lance, Epidemiology, and End Results program and state-based cancer registries, state-based Alzheimer’s registries, and the In- teractive Autism Network, should collect data on epilepsy. • fforts should be expanded to standardize the practices of coro- E ners and medical examiners in evaluating and recording cause of death in people with epilepsy with the goal of working toward a national epilepsy-related death registry. • ilot projects should explore the linkage and use of emerging P data collection and sharing partnerships using electronic health records and other electronic repositories (e.g., all-payer claims databases, regional health information organizations, the Health Maintenance Organization Research Network, NIH’s Health

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429 NEXT STEPS AND RECOMMENDATIONS Care Systems Research Collaboratory, the Health Care Cost Institute) for epilepsy surveillance and research. • pilepsy-specific data should be included in the NIH National E Children’s Study and future longitudinal studies. RECOMMENDATION 3 Develop and Evaluate Prevention Efforts for Epilepsy and Its Consequences The CDC should partner with the World Health Organization, ILAE, NIH, the Action Alliance for Suicide Prevention, and other stakehold- ers to develop and evaluate culturally appropriate and health literate prevention efforts that focus on • reventing neurocysticercosis in high-risk populations; p • ontinuing prevention efforts for established risk factors of epi- c lepsy (e.g., traumatic brain injury [TBI], stroke, brain infections such as meningitis); • reventing continued seizures in people with epilepsy and p depression; • educing felt stigma; and r • reventing epilepsy-related causes of death, including accidents p and injuries, sudden unexpected death in epilepsy (SUDEP), and suicide. IMPROVING HEALTH CARE The many challenges that people with epilepsy and their families face are so diverse, even from a medical point of view, that although treatment must continue to be held to high standards, it nevertheless should be tai- lored to individual patient needs and characteristics, and no single health professional discipline can provide all of the elements required for high- quality epilepsy care. Historically, persuading health professionals to work across professional boundaries has been difficult. One of the challenges for government and institutional policy makers will be to devise organizational structures and incentive systems that make it easy—even attractive—for people from multiple professions to work together. Throughout this report, the committee has emphasized a number of important elements of epilepsy care including • patient centeredness, recognizing that the “patient” may include the family, that people with epilepsy are more than their medical condition, and that quality-of-life factors are also important; • co-management for patients with comorbid conditions whose care may cross specialty boundaries;

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430 EPILEPSY ACROSS THE SPECTRUM • coordination, involving a team of professionals across disciplines and sectors (e.g., housing, education, employment); • community orientation, with the engagement of as many commu- nity resources as needed; and • education focused, in order to improve the self-management skills of people with epilepsy and their family members, clinicians’ knowledge and skills, and the awareness and understanding of others who interact with people with epilepsy (e.g., teachers, social workers, emergency personnel). Even in an ideal system of care, the epilepsies will remain complex to diagnose and treat. While significant progress has been made in developing seizure medications with fewer adverse effects, as well as in refining medical devices and surgical techniques for select types of epilepsy, much remains to be done to reduce the sometimes lengthy delays in diagnosis and referral to more advanced levels of care, to improve care for those with refrac- tory epilepsy, and to provide a better response to comorbidities, including mental health conditions. While this committee was asked not to explore biomedical research, over time there will be advances in this field that need to move into routine care in a timely and equitable fashion. No matter how specific epilepsy treatments have improved, currently care is not uniformly accessible due to geographic, economic, and other considerations; nor is it necessarily equitable, with troubling disparities suggested in the research that are based on racial/ethnic and socioeconomic factors. High-quality health care for epilepsy cannot be provided on a population basis until the problems of accessibility and equity are resolved. An important element in high-quality care is access to specialized epi- lepsy centers, especially for people with refractory epilepsy. Epilepsy centers are vital in providing specialized epilepsy care and have the potential to build on their current efforts by forming a network for health professional education, clinical research, and data collection and analysis. To ensure the ongoing quality of their work, as well as appropriate recognition for it, the centers should develop a robust external accreditation process. A na- tional quality measurement and improvement strategy for epilepsy should be developed and implemented. Standardization and implementation of quality metrics will hold health care providers accountable for adherence to practice guidelines and will allow people with epilepsy and their families to have more information in selecting care providers. Expanding access either to specialized epilepsy care or to high-quality care in community settings is hampered by the shortage of clinicians with adequate knowledge and skill related to epilepsy and its comorbidities. Research suggests that primary care and specialist physicians alike have significant gaps in knowledge about epilepsy. Further, many types of health

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431 NEXT STEPS AND RECOMMENDATIONS RESEARCH PRIORITIES FOR IMPROVING HEALTH CARE Box 9-2 To improve health care for people with epilepsy, the following areas should be considered priorities for future research: • evelopment of methods for early identification of and new treatment D approaches for refractory epilepsy • evelopment of screening tools (useful in clinic settings) for the early D identification of people with epilepsy who have potential cognitive impairments • evelopment of decision-support tools for electronic health records for D use by primary care and emergency room providers regarding care of persons with epilepsy, the use of screening tests, and referral steps for further evaluation and care • omparisons of the efficacy of brand and generic formulations of seizure C medications • omparative effectiveness studies of epilepsy therapies and of treatments C used to manage epilepsy (including reducing medication side effects) and comorbidities, with initial attention to setting priorities for this research • ealth services research on the provision and effectiveness of epilepsy H care by primary care providers, neurologists, and epileptologists, including referrals to epilepsy centers and to specialists for care of comorbidities • ssessment of differences in the utilization of epilepsy health care services, A particularly for underserved populations • tudies of the capacity of the workforce that cares for people with S epilepsy • tudies that examine value measures for epilepsy care as well as potential S reductions in health care costs through changes in access to specialized care and improved coordination with providers caring for comorbid health conditions • nalysis of cost savings by reducing emergency department use and A hospitalizations • ssessment of incentive strategies for the participation of clinical staff A in collaborative service models and co-management of complex cases, including strategies to promote timely referral to surgery, mental health services, and higher levels of care professionals, in addition to physicians, are involved in epilepsy care. These include nurses, nutritionists, pharmacists, psychologists, and clinical social workers. These professionals also must be current in their understanding of epilepsy and its treatment, as well as the array of educational and commu- nity resources that may be available to and needed by individual patients. RECOMMENDATION 4 Improve the Early Identification of Epi- lepsy and Its Comorbid Health Conditions The AES and the American Academy of Neurology (AAN) should lead a collaborative effort with the wide range of relevant professional organizations (including primary care professional organizations) and federal agencies (including the CDC and Health Resources and Services

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432 EPILEPSY ACROSS THE SPECTRUM Administration), and others that promote and disseminate screening programs to • evelop and validate screening tests for the early identification of d epilepsy in at-risk populations (e.g., people with developmental disabilities; people with mental health conditions; people who have had a TBI, brain tumor, or stroke); • stablish and disseminate a standard screening protocol for peo- e ple with epilepsy that implements screening on a regular basis for comorbidities with currently approved screening tests (e.g., for bone disease, depression, generalized anxiety disorder); and • stablish and disseminate a screening tool for the early identifica- e tion of patients with persistent seizures that would lead to earlier referral to an epileptologist for further diagnosis and treatment. RECOMMENDATION 5 Develop and Implement a National Quality Measurement and Improvement Strategy for Epilepsy Care The AES, in conjunction with other professional organizations involved in epilepsy care, education, and advocacy (including primary care pro- fessional organizations) should initiate the development of a national quality measurement and improvement strategy for epilepsy care. An independent organization with expertise in quality measurement and care should assist in the development of the national strategy, particu- larly the development of performance metrics. The national quality improvement strategy should • evelop and implement a plan to disseminate existing clinical d guidelines and educate health professionals and people with epilepsy and their families about them; • efine performance metrics for epilepsy with specific attention to d access to care for underserved populations, access to specialized care, co-management of care among all health care providers, and coordination of care with other health care providers and community services organizations; • ontinue the development and implementation of a set of perfor- c mance metrics that includes patient-generated measures; and • evelop demonstration projects to validate performance metrics d and test the feasibility of tracking outcomes of care. RECOMMENDATION 6 Establish Accreditation of Epilepsy Centers and an Epilepsy Care Network The National Association of Epilepsy Centers and the AES should col- laborate with relevant organizations to establish accreditation criteria

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433 NEXT STEPS AND RECOMMENDATIONS RESEARCH PRIORITIES FOR IMPROVING HEALTH Box 9-3 PROFESSIONAL EDUCATION To improve health professional education about epilepsy, the following areas should be considered priorities for future research: • dentification of knowledge gaps across health professions that relate to I areas such as seizure recognition and classification; new treatment op- tions; sudden unexpected death in epilepsy (SUDEP); and appropriate treatment modalities for specific subpopulations, including infants and children, women, individuals with severe epilepsy syndromes, people with complex comorbidities, and older adults • evelopment and testing of educational interventions and incentives that D will expand the reach of education and training opportunities about epi- lepsy and its associated comorbidities for health professionals outside of the epilepsy field (e.g., primary care, psychiatry, psychology, nursing) • ssessment of current attitudes and beliefs of U.S. health professionals A about epilepsy and the impact of these beliefs and attitudes on stigma and on access to and quality of care • valuation of curricula and content of advanced training programs for E physicians, nurses, and physician assistants for epilepsy-specific content and identification of specific opportunities and strategies for improving these types of programs • valuation of innovative teaching strategies, such as online epilepsy educa- E tion and simulation programs, to determine their suitability as models for a range of health professionals and others who interact with people with epilepsy, including teachers, daycare workers, coaches, and social workers • ssessment of the format and frequency of educational and training op- A portunities existing within epilepsy centers in order to establish best prac- tices for engaging clinicians in continuous, interdisciplinary learning • evelopment and assessment of educational interventions and resources D focused on communication skills and strategies for discussing sensitive topics (e.g., SUDEP, suicide, risks associated with medication nonadher- ence, treatment preferences) and processes with independent external review mechanisms for the ac- creditation of epilepsy centers. Accredited epilepsy centers should work together to form an Epilepsy Care Network that includes data sharing, clinical trial and other research networking, professional education, and other collaborative activities. • ndependently accredited epilepsy centers should I emphasize patient-centered care that focuses on co-management approaches with primary care providers, mental health care providers, and other specialists;

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434 EPILEPSY ACROSS THE SPECTRUM ensure that community service providers are an integral part of the centers and actively collaborate with them to link people with epilepsy to services for all facets of the individual’s health and well-being; use standardized performance metrics for quality epilepsy care; publicly report on a standard set of quality, outcome, and health services data; provide onsite education and training for epilepsy specialists (e.g., technicians, nurses, researchers, physicians) as well as educational opportunities, particularly continuing education, for other health and human services professionals in the com- munity; and serve as sites for pilot projects on innovative approaches to improving co-management and coordination of care, as well as health care quality, access, and value for people with epilepsy. • he Epilepsy Care Network of Accredited Epilepsy Centers T should conduct collaborative clinical and health services research; collect, analyze, and disseminate quality, outcome, and health services data from all of the accredited centers; and collaborate and partner with state health departments and other health care providers to ensure coverage across rural and under- served areas through telemedicine, outreach clinics, and other mechanisms. RECOMMENDATION 7 Improve Health Professional Education About the Epilepsies The AES and AAN should collaborate with relevant professional orga- nizations that are involved in the education of the wide range of health professionals who care for people with epilepsy to ensure that they are sufficiently knowledgeable and skilled to provide high-quality, patient- centered, interdisciplinary care. In their efforts to improve health pro- fessional education, these organizations should do the following: • efine essential epilepsy knowledge and skills for the range of D health professionals who care for people with epilepsy and their families. • onduct surveys of the relevant health professionals to identify C knowledge gaps and information needs. • valuate the efficacy and reach of existing educational materials E and learning opportunities (e.g., websites, continuing education courses).

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435 NEXT STEPS AND RECOMMENDATIONS • evelop engaging and interactive educational tools, such as on- D line modules, that meet specific learning needs and could be eas- ily integrated into existing curricula and education programs. • nsure that educational materials and programs for health pro- E fessionals reflect current research, clinical guidelines, and best practices. These educational materials and programs also should convey positive messages that reduce stigma and reinforce the need for (and skills associated with) clear health communication, which takes into account the culture and health literacy of the target audience. • xplore and promote opportunities to expand the use of inno- E vative interdisciplinary educational approaches, such as high- fidelity simulation. • isseminate educational materials and tools widely to health D professional educators and other relevant professional associa- tions and organizations. IMPROVING COMMUNITY RESOURCES AND QUALITY OF LIFE Epilepsy is much more than seizures. For people with epilepsy, the disorder is often defined in more everyday terms, such as challenges in school, uncertainties about social and employment situations, limitations on driving a car, and questions about independent living. Family members also may struggle with how to best help their loved one and maintain their family life. Because of the range of seizure types and severities and the high rate of comorbid health conditions, the ways in which quality of life is affected by epilepsy vary widely. This report has examined the range of community services—daycare and school, employment, trans- portation, housing, sports and recreation, and others directed at family support—relevant to improving quality of life for people with epilepsy. The committee urges improvements to community services and programs to ensure that they are • patient-centered to meet the needs of the person with epilepsy; • locally focused, taking into account the full range of resources in the area; • easily accessible; • thoroughly evaluated; • closely linked to health care providers, particularly epileptologists and epilepsy centers; and • innovative and collaborative in working with organizations and agencies focused on other neurological and chronic conditions or on similar service needs.

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436 EPILEPSY ACROSS THE SPECTRUM RESEARCH PRIORITIES FOR IMPROVING QUALITY OF Box 9-4 LIFE AND COMMUNITY RESOURCES To improve quality of life and community resources for people with epilepsy, the following areas should be considered priorities for future research: • evelopment of interventions to identify academic problems and improve D academic achievement in students with epilepsy • dentification of factors that increase the resiliency of the individual and I family and of behaviors that improve quality of life • valuations of community programs that go beyond process measures and E assess outcomes for people with epilepsy and their families • valuations of the effectiveness of vocational rehabilitation programs E • dentification of creative and innovative models of funding community I service providers and collaborations • evelopment of performance indicators for vocational and other commu- D nity services and independent living programs RECOMMENDATION 8 Improve the Delivery and Coordination of Community Services The CDC, state health departments, and the Epilepsy Foundation, in collaboration with state and local Epilepsy Foundation affiliates and other relevant epilepsy organizations, should partner with community service providers and epilepsy centers to enhance and widely dissemi- nate educational and community services for people with epilepsy that encompass the range of health and human services needed for epilepsy, its comorbid conditions, and optimal quality of life. These services include support groups; vocational, educational, transportation, tran- sitional care, and independent living assistance; and support resources, including respite care for family members and caregivers. Specific at- tention should be given to identifying needs and improving community services for underserved populations. These efforts should • upport and expand efforts by the Epilepsy Foundation’s state s and local affiliates and other organizations to link people with epilepsy and their families to local and regional resources, em- phasizing active collaboration among affiliates in the same region or with similar interests; • evelop innovative partnerships and incentives to collaborate d with organizations and public-private partnerships focused on other neurological and chronic diseases or disorders; • onduct and evaluate pilot studies of interventions to improve c the academic achievement of students with epilepsy;

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437 NEXT STEPS AND RECOMMENDATIONS • aintain effective private, state, and national programs that as- m sist people with epilepsy regarding transportation, employment, and housing; • evelop and disseminate evidence-based best practices in employ- d ment programs for people with epilepsy; • dentify and disseminate best practices for the coordination of i health care and community services, including programs using patient and parent navigators; • rovide a 24/7 nonmedical help line offering information on p epilepsy and links to community resources (this effort should involve collaboration with similar efforts for related health con- ditions); and • evelop, disseminate, and evaluate educational and training op- d portunities (including interactive web-based tools) for commu- nity service providers focused on epilepsy awareness and seizure first aid training. RAISING AWARENESS AND IMPROVING EDUCATION Patient and Family Education Education for people with epilepsy and their families plays an impor- tant role in adapting to life with epilepsy, developing self-confidence, and becoming competent in self-management, which entails being aware of one’s own needs and being able to access resources to meet those needs. Obtaining the requisite knowledge and skills related to epilepsy and its management can also promote optimal well-being and quality of life for people with epilepsy and their families, help prevent misconceptions about the disorder, and reduce concerns about stigma. People with epilepsy and their families should • receive and have access to up-to-date, accurate information about epilepsy, treatment options, and associated comorbidities and risks, including SUDEP, as well as information about available vocational and community resources and health care services upon diagnosis and throughout their care; • have access to information that meets their specific needs and that is clearly written and communicated, appropriate for various health literacy levels, and linguistically and culturally appropriate; • build knowledge and self-management skills, including how to solve problems, make decisions, use resources, develop partner- ships with health care providers, and participate actively in patient- centered care; and

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438 EPILEPSY ACROSS THE SPECTRUM RESEARCH PRIORITIES FOR IMPROVING PATIENT AND Box 9-5 FAMILY EDUCATION To improve the education of people with epilepsy and their families, the fol- lowing areas should be considered priorities for future research: • ssessment of the information needs of specific subpopulations, including A women, men, older adults, children and adolescents, youths transitioning to adulthood, racial/ethnic minorities, people with low socioeconomic sta- tus, individuals with more severe forms of epilepsy or comorbidities and their families, individuals with cognitive limitations, and individuals with seizure-like events with a psychological basis • ssessment of information needs associated with epilepsy-related risks A such as injuries, suicide, status epilepticus, and sudden unexpected death in epilepsy • dentification of best practices, effective strategies and preferred formats, I and innovative mechanisms for educating patients and families, especially individuals in underserved populations • evelopment of a knowledge base to support comprehensive educational D programs that feature content for epilepsy-specific self-management as well as relevant aspects of the chronic care management models • esting of methods for developing educational programs and resources T that appropriately reflect health literacy, cultural diversity, developmental stage, cognitive ability, and gender • xamination of the role that educational materials and programs, support E groups, and counseling resources may play in helping individuals and their families successfully cope with stigma and related concerns, such as the fear of having a seizure in public • have access to appropriate educational resources and opportuni- ties regardless of their socioeconomic status, demographic group, culture, or geographic location. RECOMMENDATION 9 Improve and Expand Educational Oppor- tunities for People with Epilepsy and Their Families To ensure that all people with epilepsy and their families have access to accurate, clearly communicated educational materials and information, the Epilepsy Foundation, the Epilepsy Therapy Project, the CDC, and other organizations involved in Vision 20-20 should collaborate to do the following: • onduct a formal evaluation of currently available epilepsy web- C sites and their educational resources to ensure that they meet re- quirements of clear health communication and are linguistically and culturally appropriate for targeted audiences. This requires thorough testing of content with target audiences, including un- derserved groups, and revision as necessary.

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439 NEXT STEPS AND RECOMMENDATIONS • evelop a central, easily navigated website (“clearing house”) D that provides direct links to websites containing current, accurate epilepsy-related information for individuals and their families. This centralized resource should be comprehensive; it should include concise, easy-to-understand descriptions of the informa- tion available on the linked websites and up-to-date contact information for epilepsy organizations; and it should be widely disseminated to health care providers and people with epilepsy and their families. • nsure that educational resources are up to date, are effective, E and reflect the latest scientific understanding of the epilepsies and their associated comorbidities and consequences. • ngage a wide and diverse spectrum of people with epilepsy and E their families in the development of online educational resources to ensure that the content meets the specific needs of target audi- ences at the outset. • upport the development, evaluation, replication, and expanded S use of self-management and educational programs, including those developed through the Managing Epilepsy Well Network. • ngage state and local Epilepsy Foundation affiliates, epilepsy E centers, and health care systems and providers to expand the dissemination of available educational resources and self- management tools to people with epilepsy and their families. • xplore the development of a formal, standardized certificate E program for epilepsy health educators. Public Awareness and Knowledge While surveys have suggested that attitudes regarding epilepsy have become less negative over time, it is not certain how contemporary atti- tudes compare and whether overall improvements in attitudes have affected behavior. Compelling testimony from families dealing with epilepsy and re- search on employment suggest that problems of stigma remain widespread. Efforts to increase public awareness and knowledge are motivated by the expectation that information that reduces misconceptions and misinforma- tion will improve attitudes and, ultimately, behavior toward people with epilepsy and thereby reduce stigma. Stigma, whether felt or overtly experi- enced, has many negative consequences for both health and quality of life, and overcoming it is an important goal for the field. For the public in general, the news and entertainment media are pri- mary sources of health information. Unfortunately, inaccurate depictions of people with epilepsy and of severe seizures, used for dramatic effect, rein- force negative perceptions. An ongoing effort is needed to create key part-

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440 EPILEPSY ACROSS THE SPECTRUM RESEARCH PRIORITIES FOR IMPROVING PUBLIC Box 9-6 AWARENESS AND KNOWLEDGE To improve public awareness and knowledge, the following areas should be considered priorities for future research: • urveys (e.g., General Social Survey, HealthStyles Survey) that capture S trends in knowledge and awareness and attitudes and beliefs about epi- lepsy over time and in specific subpopulations • valuations of websites seeking to promote accurate knowledge about E epilepsy (e.g., Talk About It) to determine effective strategies for educating the public through online resources • valuation of public awareness campaigns that include documentation E and analysis of pre- and post-campaign data to assess changes in public understanding of and beliefs about epilepsy and to establish best practices in developing public awareness efforts nerships within the entertainment media to encourage less sensationalistic portrayals and more opportunities for the passive acquisition of accurate knowledge about epilepsy, recognizing that the entertainment media have limits as educational vehicles. Meanwhile, the news and information (versus entertainment) media can be approached with story ideas about various as- pects of epilepsy and its care—new treatments, compelling personal stories, epilepsy in specific population groups (e.g., military veterans), and so on. Using multiple forms of media, including social media and the Internet, clear messages, and diverse activities targeted to specific audiences would increase the chances of success for stigma reduction and public awareness efforts. Any such efforts should take into account the health literacy and cultural characteristics of target audiences, with different strategies devel- oped for reaching each audience, one of which should be policy makers. Some campaigns for chronic conditions have effectively used high-profile spokespeople. Campaigns can be local or national; the infrastructure of state and local epilepsy organizations could be a valuable resource for ex- tending a national campaign’s reach to communities. Successful, multifac- eted campaigns are expensive, need to be sustained over a period of years, must include an effective formative evaluation strategy to enable revision of messages and tactics as needed, and yet must be flexible enough to respond to unanticipated opportunities. RECOMMENDATION 10 Inform Media to Improve Awareness and Eliminate Stigma The CDC and other Vision 20-20 and relevant organizations should support and bolster programs that provide information to journalists and to writers and producers in the entertainment industry to improve

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441 NEXT STEPS AND RECOMMENDATIONS public knowledge about epilepsy and combat stigma. Efforts to col- laborate and engage with the media should include the following: • romote more frequent, accurate, and positive story lines about P and depictions of characters with epilepsy. • ontinue to encourage high-profile individuals with epilepsy (or C high-profile individuals who have family members with epilepsy) to openly discuss their experiences and act as spokespeople. • stablish partnerships with stakeholders that represent related E conditions associated with stigma (e.g., mental health). Efforts could include the development of fellowships or integration of epilepsy information into existing education programs for journalists. • ontinue to work with national and local news media on break- C ing news about epilepsy research and human interest stories. • isseminate regular updates on research and medical advances D to journalists and policy makers through a variety of mecha- nisms, including e-mail updates, listserv messages, social media, and face-to-face meetings. RECOMMENDATION 11 Coordinate Public Awareness Efforts The Epilepsy Foundation and the CDC should lead a collaborative effort with relevant stakeholder groups, including other members of Vision 20-20, to continue to educate the public through awareness efforts, promotional events, and educational materials and should col- laborate to do the following: • stablish an advisory council of people with epilepsy and their E families, media and marketing experts, private industry partners, and health care experts to meet regularly and to inform future efforts. • evelop shared messaging that emphasizes the common and D complex nature of the epilepsies and the availability of successful seizure therapies and treatments. • xplore the feasibility and development of an ongoing, coordi- E nated, large-scale, multimedia, multiplatform, sustainable public awareness campaign that would start by targeting key audience segments to improve information and beliefs about the epilepsies and reduce stigma. • nsure that all awareness campaigns include E consideration of health literacy, cultural appropriateness, and demographics of target audiences (e.g., age, gender);

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442 EPILEPSY ACROSS THE SPECTRUM rigorous formative research and testing of materials through- out the campaign; and appropriate evaluation and follow-up tools and efforts. STRENGTHENING STAKEHOLDER COLLABORATION Epilepsy advocacy organizations are working to pull together diverse stakeholders in order to create a stronger, united voice for change. The Vision 20-20 group is an informal coalition of nonprofit organizations and federal agencies. It provides an opportunity to move the field forward through coordinated efforts among task force members and the develop- ment of public-private partnerships. Vision 20-20 could be the driving force for developing strategies and plans for the implementation of this report’s research priorities and recommendations, including monitoring and evalu- ating progress over the short and long term. This coalition has the breadth and depth of expertise to take the public health agenda provided in this report and move it forward into action steps to improve the lives of people with epilepsy. Vision 20-20 could create a framework and mechanism for continued cross-organizational collaboration by establishing a set of working groups in key areas. Such groups could monitor advances in the epilepsy field, share and disseminate information, engage a diverse spectrum of people with epilepsy and their families, and create a united voice for advancing re- search, care, and education. For example, a working group on health policy, health reform, and advocacy could monitor legislative and policy activities at the local, state, and national levels; activate people with epilepsy and their families to play a role in informing policy makers; and advocate for legislation and policy changes that could improve health and quality of life for people with epilepsy. A working group on surveillance and population health and health services research could develop a comprehensive strat- egy to encourage people with epilepsy to participate in a broad range of research efforts from population-based surveillance to research focused on self-management and education. Among other efforts, it also could request and advocate for the regular inclusion of questions targeted to epilepsy, its comorbidities, and epilepsy-related health care services in national and state health surveys. RECOMMENDATION 12 Continue and Expand Vision 20-20 Working Groups and Collaborative Partnerships The member organizations of Vision 20-20 should continue their col- laborative endeavors and further these efforts by expanding ongoing working groups that aim to advance the field, support people with epilepsy and their families, and educate the public. They should ex-

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443 NEXT STEPS AND RECOMMENDATIONS plore partnerships with other organizations as well as with stakehold- ers who represent related conditions (e.g., mental health, TBI, stroke, autism spectrum disorders). The working groups should communicate regularly, identify common goals, develop strategic plans, and, when possible, carry out joint activities. The working groups should focus on, but not limit their efforts to, the following areas: • health policy, health reform, and advocacy; • surveillance and epidemiologic and health services research; • health care and community resources and services; • education of health professionals; • education of people with epilepsy and their families; and • public education and awareness. ENGAGING PEOPLE WITH EPILEPSY AND THEIR FAMILIES Among the most persuasive epilepsy advocates and educators are peo- ple with epilepsy and their family members who are willing to speak out in order to provide a truer picture of the disorder and its impact. While many people may be willing to play such a role, training and support will help them do so more effectively. This may be the case regardless of whether they are advocating for improvements in care in general terms, working with support groups serving other families, or advocating for a higher level of service for themselves, a special school accommodation for their child, or a new medication regimen for their parent. People with epilepsy and their families also advance knowledge about epilepsy and its treatment when they participate in clinical research studies, surveys, and other investiga- tions into ways to improve care and increase understanding of the meaning of epilepsy in individuals’ lives. RECOMMENDATION 13 Engage in Education, Dissemination, and Advocacy for Improved Epilepsy Care and Services People with epilepsy and their families should, to the extent possible, work to educate themselves and others about the epilepsies, participate in research, and be active advocates for improvements in care and services for themselves, their family members, and other people with epilepsy. Given their interests and to the extent possible, people with epilepsy and their families should • ecome informed about epilepsy and actively participate in and b advocate for quality health care and community services with policy makers at the local, state, and national levels;

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444 EPILEPSY ACROSS THE SPECTRUM • iscuss best options for care with health care providers, includ- d ing exploring referrals to epileptologists or epilepsy centers and learning about available community resources and services as needed; • onsider participation in available research and surveillance c opportunities; • ngage with teachers, school officials, daycare workers, coaches, e and other professionals to educate them about epilepsy and en- sure that necessary services and accommodations are provided; • alk openly, when possible, with family, friends, and colleagues t about epilepsy and the impact it has on daily living and quality of life; • ctively participate in support networks to share experiences a with other people with epilepsy and their families; and • ork with nonprofit organizations to raise awareness and edu- w cate others about epilepsy and participate in advocacy efforts. CONCLUSION This review of the public health dimensions of the epilepsies highlights numerous gaps in knowledge about and management of epilepsy and also presents opportunities to move the field forward. Improvements in surveil- lance methods and electronic health records hold promise for more precise information about the epilepsies, which could enable better identification of high-risk groups and better matching of treatments to individuals. There are a number of opportunities for the public health community to improve efforts to prevent epilepsy and its consequences. The growing emphasis on quality of care, as well as access and cost containment, in the U.S. health care system offers an opportunity to improve care for this large patient group. Preparing health professionals to provide better epilepsy care, al- though a challenge, will help improve quality and reduce costs. Consistent delivery of accurate, clearly communicated health information can better prepare people with epilepsy and their families to cope with the disorder and its consequences. Efforts aimed at raising awareness about epilepsy among the general public will reduce stigma and enable the full participa- tion of people with epilepsy in society. Through collaboration and com- mitment over time, the bold goals outlined throughout this report can be accomplished.