1

Introduction

Our quality of life is turned upside down with each new challenge as the disorder progresses.

–Lisa Soeby

In the beginning of William’s journey in life people would say seizures aren’t a big deal, people live with them every day. It was tough to not get angry because it is just like cancer or other diseases that attack people’s bodies. William’s brain was being attacked and for many they couldn’t see that or know what the early mortality rates in epilepsy patients are. I hope we could educate the public better, because the right education teaches more tolerance and sensitivity.

–Tiernae Buttars

Characterized by seizures that are unpredictable in frequency, epilepsy is a common neurological disorder that affects people of all ages, with onset most often occurring in childhood and older adulthood. Epilepsy is a spectrum of disorders—the epilepsies—with a range of severities, widely differing seizure types and causes, and varying impacts on individuals and their families. Beyond actually living with epilepsy, its seizures, and coexisting health conditions, the challenges facing the millions of people living with epilepsy include having access to high-quality health care; learning about and coordinating health care and educational, vocational, independent living, and other community services; and dealing with stigma and common public misunderstandings. Epilepsy imposes an immense burden on individuals, families, and society. Estimates1 are that

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1The committee used the prevalence and incidence ranges from Hirtz and colleagues (2007) and applied them to a U.S. population number of 313,000,000. (The U.S. Census population



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1 Introduction Our quality of life is turned upside down with each new challenge as the disorder progresses. –Lisa Soeby In the beginning of William’s journey in life people would say seizures aren’t a big deal, people live with them every day. It was tough to not get angry because it is just like cancer or other diseases that attack people’s bodies. William’s brain was being attacked and for many they couldn’t see that or know what the early mortality rates in epilepsy patients are. I hope we could educate the public better, because the right education teaches more tolerance and sensitivity. –Tiernae Buttars C haracterized by seizures that are unpredictable in frequency, epilepsy is a common neurological disorder that affects people of all ages, with onset most often occurring in childhood and older adult- hood. Epilepsy is a spectrum of disorders—the epilepsies—with a range of severities, widely differing seizure types and causes, and varying impacts on individuals and their families. Beyond actually living with epilepsy, its seizures, and coexisting health conditions, the challenges facing the mil- lions of people living with epilepsy include having access to high-quality health care; learning about and coordinating health care and educational, vocational, independent living, and other community services; and dealing with stigma and common public misunderstandings. Epilepsy imposes an immense burden on individuals, families, and society. Estimates1 are that 1 The committee used the prevalence and incidence ranges from Hirtz and colleagues (2007) and applied them to a U.S. population number of 313,000,000. (The U.S. Census population 19

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20 EPILEPSY ACROSS THE SPECTRUM • 2.2 million people in the United States and more than 65 million people worldwide have epilepsy; • 150,000 new cases of epilepsy are diagnosed in the United States annually; • 1 in 26 people in the United States will develop epilepsy at some point in their lifetime; • children and older adults are the fastest-growing segments of the population with new cases of epilepsy; • risk of death increases for people with epilepsy, with an estimated 10 years of life lost for people whose epilepsy has a known cause and 2 years lost for people with epilepsy from an unknown cause; • the number of people with epilepsy who die of sudden unexpected death in epilepsy (SUDEP) varies from 1 of every 10,000 newly diagnosed to 9 of every 1,000 candidates for epilepsy surgery; and • the annual direct medical care cost of epilepsy in the United States is $9.6 billion.2 This does not consider community service costs or indirect costs from losses in quality of life and productivity (these indirect costs are estimated to constitute the majority of the cost burden of epilepsy).3 Throughout the report, the committee emphasizes the ways in which epilepsy is a spectrum disorder. Epilepsy comprises more than 25 syndromes and many types of seizures that vary in severity. Additionally, people who have epilepsy span a spectrum that includes men and women of all ages and of all socioeconomic backgrounds and races/ethnicities, who live in all areas of the United States and across the globe. The impacts on physical health and quality of life encompass a spectrum as well, with individuals experiencing different health outcomes and having a range of activities of daily living that may be affected, including driving, academic achievement, social interactions, and employment. For some people, epilepsy is a child- hood disorder that goes into remission (although the seizures may have lifelong consequences), while for others it is a lifelong burden or a condi- tion that develops later in life or in response to an injury or other health condition. These many complexities of the epilepsies make it a challenging health condition to convey to the general public to promote understanding estimate for January 30, 2012, was 312,933,845; www.census.gov/main/www/popclock. html.) In the paper by Hirtz and colleagues (2007) the median for incidence, based on the four studies of all age groups, was 48 per 100,000; median prevalence rate for all age groups was 7.1 per 1,000. 2 Data are in 2004 dollars. As discussed later in this chapter and in Chapter 4, estimates of the cost burden of epilepsy vary widely and more data are needed on the use of health care services and on indirect costs. 3 Begley et al., 2000; Gaitatzis et al., 2004; Hauser et al., 1980; Hesdorffer et al., 2011; Hirtz et al., 2007; Thurman, 2011; Thurman et al., 2011; Tomson et al., 2008; Yoon et al., 2009.

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21 INTRODUCTION and alleviate stigma. This report aims to provide evidence and impetus for actions that will improve the lives of people with epilepsy and their families. SCOPE OF WORK In 2010, the Institute of Medicine (IOM) was asked to examine the public health dimensions of the epilepsies with a focus on four areas: • public health surveillance and data collection and integration; • population and public health research; • health policy, health care, and human services; and • education for providers, people with epilepsy and their families, and the public. The committee’s statement of task (Box 1-1) details the request for realistic priorities and recommendations in these four areas. The committee was asked not to examine biomedical research priorities because the Epilepsy Research Benchmarks, developed in 2000, continue to be updated by the National Institute of Neurological Disorders and Stroke (NINDS) and col- laborating agencies and organizations (NINDS, 2007a,b, 2010). To accomplish its task the IOM convened the Committee on the Public Health Dimensions of the Epilepsies, comprised of 17 members with exper- tise in epilepsy care, health services research, epidemiology, public health surveillance, mental health services, health care services and delivery, health literacy, public health, education, and communications. The IOM study had 24 sponsors: 12 federal agencies and 12 nonprofit organizations (Box 1-1). Vision 20-20, a coalition that includes many of the nonprofit organizations and federal agencies that sponsored the study, focuses on epilepsy research, care, services, education, and advocacy efforts. The committee held five meetings and two public workshops during the course of its work (Appendix A). Throughout the study, many people with epilepsy and their family members and colleagues, as well as study sponsors and other organizations and individuals, provided compelling testimony to the committee about their concerns, burdens, joys, and chal- lenges. The quotes throughout the report highlight some of the issues raised in testimony presented at the workshops and in e-mails to the committee.4 In addition to the meetings and workshops, a comprehensive review of the scientific literature and other available evidence formed a critically impor- tant part of the committee’s efforts. The committee’s work also benefited from information provided by sponsoring organizations, health systems, 4 Public testimony and other materials submitted to the committee are available by request through the National Academies’ Public Access Records Office.

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22 EPILEPSY ACROSS THE SPECTRUM INSTITUTE OF MEDICINE STUDY ON THE Box 1-1 PUBLIC HEALTH DIMENSIONS OF THE EPILEPSIES: TASK AND SPONSORS Statement of Task An ad hoc committee will conduct a study and prepare a report to recommend priorities in public health, health care and human services, and health literacy and public awareness for the epilepsies and to propose strategies to address these priori- ties. The committee will focus its work on the following four topic areas: • ublic Health Surveillance, Collection, and Data Integration: Examine how ex- P isting or new surveillance systems could support a more accurate assessment of the public health burden of the epilepsies for patients and their families. • opulation and Public Health Research: Identify what research questions or P areas of focus should be priorities for future epidemiological and population health studies on the epilepsies that may inform the development of interven- tions or preventive strategies. • ealth Policy, Health Care, and Human Services: Identify what constitutes H adequate care and access to health and human services for people with epi- lepsy; what can be done to improve the consistency and quality of care for persons with epilepsy; what gaps and needs for improvement exist. Discus- sion is needed on maximizing community inclusion and personal outcomes for persons with epilepsies (e.g., changes in public health and health services policies and practices or community- and family-based support programs). • atient, Provider, and Public Education: Define what needs exist to improve P the education and training of health and other professionals who treat or support persons with epilepsy. Additionally, explore how public education and awareness campaigns could best be used to increase patient and public literacy, reduce stigma, and improve community support and participation for people with epilepsy. professional organizations, and others on specific topics (e.g., health edu- cation programs, health services use). Underpinning all its work was the committee’s desire to set forth practical, action-oriented goals to improve the health and well-being of people with epilepsy and their families. This report provides the committee’s findings, research priorities, and recommendations and documents the evidence base. The report was writ- ten for a broad audience, including people with epilepsy; family members; health care and human services providers; local, state, and national policy makers; researchers; and foundations and nonprofit organizations. Organization of the Report The report covers the breadth of the statement of task. The current inadequacy of surveillance data on the epilepsies, methodologic consider-

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23 INTRODUCTION Recommendations should be made for potential and realistic solutions and should, to the extent possible, prioritize the needs to be addressed taking into account the relative urgency of the identified needs, feasibility of implementing solutions, and considerations of time and cost. The recommendations should have a domestic fo- cus, yet can identify major international issues. The committee should not focus on biomedical research priorities, such as those included in the 2007 Epilepsy Research Benchmarks so as to not duplicate this existing effort within the epilepsy research community to identify and monitor biomedical research needs. Sponsors Department of Health and Human Services sponsors: Administration on Develop- mental Disabilities, Center for Devices and Radiological Health (Food and Drug Ad- ministration [FDA]), Center for Drug Evaluation and Research (FDA), Eunice Kennedy Shriver National Institute of Child Health and Human Development (National Insti- tutes of Health [NIH]), National Center for Chronic Disease Prevention and Health Promotion (Centers for Disease Control and Prevention [CDC]), National Center on Birth Defects and Developmental Disabilities (CDC), National Institute of Mental Health (NIH), National Institute of Neurological Disorders and Stroke (NIH), National Institute on Aging (NIH), Office of the Assistant Secretary for Health, Office of the Assistant Secretary for Planning and Evaluation, and Office on Women’s Health Vision 20-20 nonprofit organization sponsors: American Epilepsy Society, Citizens United for Research in Epilepsy, Dravet.org, Epilepsy Foundation, Epilepsy Therapy Project, Finding A Cure for Epilepsy and Seizures, Hemispherectomy Foundation, International League Against Epilepsy, National Association of Epilepsy Centers, Preventing Teen Tragedy, Rasmussen’s Encephalitis Children’s Project, and Tuberous Sclerosis Alliance ations, and potential data sources that could be used to build the knowledge base so as to better focus future efforts in health policy, research, and public health are discussed in Chapter 2. Chapter 3 looks at the epidemiologic research with a focus on risk factors, comorbidities, and outcomes of the epilepsies and the corresponding prevention strategies and research needs. Chapter 4 examines health care for people with epilepsy and highlights the actions needed to improve the quality, access, and value of care. Improv- ing quality of care will necessitate enhancing the education and training of the range of health professionals involved; this topic is covered in Chapter 5. Because epilepsy can produce challenges that limit quality of life, the committee focuses on community resources and supporting human ser- vices and makes recommendations for improving quality of life in Chapter 6. For people with epilepsy and their family members, being informed about epilepsy is critically important, and opportunities for improving these educational efforts are explored in Chapter 7. Information needs

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24 EPILEPSY ACROSS THE SPECTRUM are then broadened in Chapter 8 to look at ways of raising awareness and overcoming the stigma and misperceptions often associated with epilepsy by communicating clearly with the public. Based on the evidence, findings, and conclusions discussed in the preceding chapters, the report concludes with the committee’s research priorities and recommendations in Chapter 9. In reading the report it is important to note that the concluding chapter draws together the evidence presented throughout the report and its common themes (see later discussion in this chapter) and puts forth the committee’s call for action from a wide range of government, nonprofit, community, and health professional organizations to improve the lives of people with epilepsy and their families. To begin the report, this chapter provides an overview of epilepsy—a challenging task, given the complexity of the disorder and its varied im- pacts. The chapter begins with details on the extent and costs of epilepsy followed by an overview that discusses definitions and terminology and reviews types of seizures and epilepsy syndromes. A short synopsis of health care, quality of life, and education needs is followed by an overview of current biomedical research efforts and public health responses to epilepsy. The chapter ends by identifying several of the report’s cross-cutting themes. EPILEPSY IS A FREQUENTLY OCCURRING AND COSTLY NEUROLOGICAL DISORDER Incidence and Prevalence in the United States Epilepsy is the fourth most common neurological disorder in the United States after migraine, stroke, and Alzheimer’s disease (Hirtz et al., 2007). For many neurological disorders (such as Parkinson’s disease and Alzheim- er’s disease), the number of new cases (incidence) is highest in older adults, while others (such as autism spectrum disorders and cerebral palsy) may be congenital or appear in early childhood (Table 1-1). For the epilepsies, the incidence is bimodal—highest in both young children and older adults (Fig- ure 1-1a), although epilepsy may occur at any point in the life span, with the total number of people in the population who have epilepsy (prevalence) increasing with age (Figure 1-1b). An estimated 1 in 100 people in the United States has had a single un- provoked seizure or has been diagnosed with epilepsy (NINDS, 2011c). It remains challenging to determine the total number of people with epilepsy in the United States and, in particular, the extent of the disorder in various subpopulations (e.g., by age, gender, race/ethnicity, socioeconomic status, geography). The 2.2 million prevalence estimate is most accurately viewed as approximating a midpoint in a wide potential range of 1.3 million to 2.8 million people with epilepsy (Hirtz et al., 2007; see also footnote 1). This

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25 INTRODUCTION TABLE 1-1 Prevalence and Incidence of Common Neurological Diseases and Disorders Estimated Annual Estimated U.S. U.S. Incidence Prevalence (total (number of new Age(s) of Peak Disease/Disorder number of cases) cases per year) Incidence Migraine 35,461,000 — — Stroke 2,956,000 541,000 Older adults Alzheimer’s disease 2,459,000 468,000 Older adults Epilepsya 2,200,000 150,000 Children and older adults Autism spectrum 500,000 individuals — Children disorders younger than 21 years Parkinson’s disease 349,000 59,000 70 years and older Multiple sclerosis 266,000 12,000 30 years Cerebral palsy 207,000 — First year of life NOTES: The disorders listed in the table were selected by the authors of the Hirtz and colleagues (2007) study because they are neurological disorders across the life span that cause substantial morbidity and mortality. aTheepilepsy estimates are based on the calculations described in footnote 1; Hirtz and colleagues (2007) estimated 2,098,000 for epilepsy prevalence and 142,000 for incidence. Current estimates were not calculated for the other conditions since several are based on subpopulations (e.g., adults age 65 and older), and up-to-date general subpopulation denominators were not available. SOURCE: Adapted from Hirtz et al., 2007. Reprinted with permission from Wolters Kluwer Health. rather high degree of uncertainty exists because the population-based as- sessments of epilepsy prevalence are outdated and do not reflect the current size and diversity of the U.S. population (Chapters 2 and 3). Cost of the Epilepsies in the United States Epilepsy is a costly disorder in terms of its impact on individuals and their families, as well as on society. For example, seizures and seizure medications may affect cognitive ability—a concern for people at all ages, including young children whose brains and cognitive functions are still developing. For young and middle-aged adults, epilepsy can impact the abil- ity to live and function independently, drive to and from school and work, maintain employment, have children, and participate in social life. For older adults, epilepsy may contribute to the health burden of other neurological disorders, such as stroke or dementia, and may hinder safety and indepen- dent living. These limitations can pose considerable economic, social, and emotional burdens on individuals with epilepsy and their families.

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26 EPILEPSY ACROSS THE SPECTRUM 250 Rate per 100,000 200 150 100 50 10 20 30 40 50 60 70 80 90 Age (years) FIGURE 1-1a Incidence of epilepsy by age—composite of 12 studies in developed countries, 1988–2005. SOURCE: Thurman, 2011. 14 Prevalence per 1,000 12 10 8 6 4 2 10 20 30 40 50 60 70 80 90 Age (years) FIGURE 1-1b Prevalence of epilepsy by age—composite of selected U.S. studies, 1978-2005. SOURCE: Thurman, 2011.

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27 INTRODUCTION For society, the cost burden of epilepsy is a sum of direct health care costs (e.g., hospitalizations, health care visits), direct nonmedical costs (e.g., informal care, community services), and indirect costs due to lost productivity from unemployment, underemployment, and premature mor- tality. Indirect costs—the social costs resulting from effects on employment, productivity, and independent living—are considerably higher than direct medical costs for many types of epilepsy. Estimates of the annual economic burden of epilepsy in the United States range from $9.6 billion to $12.5 billion5 (Begley et al., 2000; Yoon et al., 2009). A significant percentage of the direct health costs of epilepsy is associated with the more severe forms of epilepsy and the unresponsiveness of some types of epilepsy to medica- tions or other treatments (Begley et al., 2000). Global Burden of Epilepsy Epilepsy is estimated to affect more than 65 million people worldwide, with more than 80 percent of people with epilepsy living in developing countries (Ngugi et al., 2010; Thurman et al., 2011). This disproportionate burden is reflected in prevalence estimates that are at least twice as high in developing countries compared to developed countries (Ngugi et al., 2010). These markedly higher rates may be explained in part by larger numbers of cases caused by specific infectious diseases endemic in some developing nations (Ngugi et al., 2010). Further, as shown in Table 1-2, in terms of impact on disability and premature mortality, epilepsy ranks fifth among mental health, neurological, and substance-use disorders in low- and middle-income countries (Collins et al., 2011). Although data are scant and developed using varying methodologies (Leonardi and Ustun, 2002), a number of consistently identified barriers to healthy living confront people with epilepsy globally, including inadequate infrastructure (e.g., health care services and workforce, rehabilitation pro- grams, social supports), poor access to medications and other treatments, limited public knowledge and awareness, and stigma (Dua et al., 2006). Generally, the availability of diagnostic services and community services for people with epilepsy varies, with lower-income countries having fewer services (Dua et al., 2006). The “treatment gap,” or the difference between the number of people who need treatment for epilepsy and the number who receive it, is significant. While the treatment gap is less than 10 percent in many high-income countries, it rises to more than 50 percent in middle- income countries and more than 75 percent in low-income countries (Meyer et al., 2010). Furthermore, variations are seen within countries, with rural 5 Thelower estimate is in 2004 dollars and is an estimate of direct costs (Yoon et al., 2009). The higher estimate is in 1995 dollars, 85 percent of which is attributable to indirect costs (Begley et al., 2000).

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TABLE 1-2 28 Global Burden of Mental Health, Neurological, and Substance-Use (MNS) Disordersa Worldwide High-Income Countriesb Low- and Middle-Income Countries Rank DALYsc DALYs DALYs No. Cause (millions) Cause (millions) Cause (millions) 1 Unipolar depressive disorders 65.5 Unipolar depressive disorders 10.0 Unipolar depressive disorders 55.5 2 Alcohol-use disorders 23.7 Alzheimer’s and other dementias 4.4 Alcohol-use disorders 19.5 3 Schizophrenia 16.8 Alcohol-use disorders 4.2 Schizophrenia 15.2 4 Bipolar affective disorder 14.4 Drug-use disorders 1.9 Bipolar affective disorder 12.9 5 Alzheimer’s and other dementias 11.2 Schizophrenia 1.6 Epilepsy 7.3 6 Drug-use disorders 8.4 Bipolar affective disorder 1.5 Alzheimer’s and other dementias 6.8 7 Epilepsy 7.9 Migraine 1.4 Drug-use disorders 6.5 8 Migraine 7.8 Panic disorder 0.8 Migraine 6.3 9 Panic disorder 7.0 Insomnia (primary) 0.8 Panic disorder 6.2 10 Obsessive-compulsive disorder 5.1 Parkinson’s disease 0.7 Obsessive-compulsive disorder 4.5 11 Insomnia (primary) 3.6 Obsessive-compulsive disorder 0.6 Posttraumatic stress disorder 3.0 12 Posttraumatic stress disorder 3.5 Epilepsy 0.5 Insomnia (primary) 2.9 13 Parkinson’s disease 1.7 Posttraumatic stress disorder 0.5 Multiple sclerosis 1.2 14 Multiple sclerosis 1.5 Multiple sclerosis 0.3 Parkinson’s disease 1.0 aExamples of MNS disorders under the purview of the Grand Challenges in Global Mental Health initiative. bWorld Bank criteria for income (2009 gross national income per capita): low income is US$995 equivalent or less; middle income is $996-$12,195; high income is $12,196 or more. cAdisability-adjusted life-year (DALY) is a unit for measuring the amount of health lost because of a disease or injury. It is calculated as the present value of the future years of disability-free life that are lost as a result of the premature deaths or disability occurring in a particular year. SOURCE: Collins et al., 2011. Reprinted with permission from Macmillian Publishers, Ltd. Nature: http://www.nature.com/nature/index.html.

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29 INTRODUCTION areas having a wider treatment gap than urban ones, which likely reflects some combination of inadequate access to services; stigma, negative beliefs, and discriminatory attitudes about epilepsy; and low health literacy (Ngugi et al., 2010). However, as described further below, stigma is universal: “[E]verywhere in the world it is a hidden disease” (de Boer, 2010, p. 631). DEFINING THE EPILEPSIES While most people only see the seizures themselves, there is far more to epilepsy. Being proactive in treatment means not only taking daily medica- tion, but also participating in activities, talking to doctors or therapists as necessary, actively participating in school, and thriving at work. –Elizabeth Musick The occurrence of two or more unprovoked seizures separated by at least 24 hours is the broad operational definition of epilepsy (ILAE, 1993), which the committee uses for the purposes of this report. Seizures6 are, in essence, symptoms of epilepsy, and epilepsy is the disorder. However, the details are much more complex.7 Seizures differ from person to person with respect to their cause and severity, the areas of the brain involved, the location(s) and functions of the body affected, the effectiveness of medica- tions and other treatments, and many other factors. These large and sig- nificant differences are why epilepsy, as noted, is understood as a spectrum of disorders—the epilepsies. More than 25 epilepsy syndromes and other epilepsy disorders have been delineated (Berg et al., 2010). While epilepsy is a chronic disorder, some people with epilepsy, particularly children, go into remission (Berg et al., 2001; Callaghan et al., 2007; Choi et al., 2011; Sillanpää and Schmidt, 2006). Individuals with epilepsy are at risk not only for seizures, but also for a myriad of comorbid health conditions (i.e., conditions that occur in persons with epilepsy more than would be expected by chance; Chapter 3). Often the comorbidities that accompany epilepsy outweigh the burden of the seizures themselves. Common comorbidities that occur in epilepsy include cognitive dysfunction, such as memory, attention, or concentration problems; mental health conditions, such as depression or anxiety; and so- matic comorbidities, such as sleep disorders, migraines, or cardiovascular disease. Other health problems can occur as a result of ongoing seizures, the cause of the epilepsy, or problems associated with the treatment, such 6 An epilepsy seizure has been defined as a “transient occurrence of signs and/or symptoms due to abnormal excessive or synchronous neuronal activity in the brain” (Fisher et al., 2005, p. 470). 7 This report does not provide an in-depth clinical description of the epilepsies; resources such as Ropper and Samuels (2009) and Bazil and Pedley (2009) can be consulted for ad- ditional information.

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38 EPILEPSY ACROSS THE SPECTRUM ally working with people with epilepsy need to be enhanced. As discussed in Chapter 5, health professionals need current knowledge about many aspects of the epilepsies: seizure recognition and diagnosis; prevention strategies and treatment options; associated comorbidities, risks, and safety concerns; necessary social services; psychosocial and quality-of-life factors; and countering stigma. The specific types and depth of knowledge required vary across professions, depending on the roles, responsibilities, and scope of practice of the professionals and the specific settings in which they work. Quality of Life and Community Services Living with epilepsy is about seizures but also much more. Beyond the seizures, comorbid health conditions and epilepsy-related limitations can have an impact on many aspects of health and quality of life. Living with epilepsy, particularly refractory epilepsy, can involve challenges in school, uncertainties about social and employment situations, limitations on driv- ing, and questions about independent living. In a U.S. community-based survey that received responses primarily from adults with epilepsy, respondents noted that the major problems they experienced due to having epilepsy included limitations on daily activities, stigma, family concerns, and fear of the seizures (Fisher et al., 2000a). Survey respondents had median household incomes less than the general population, and unemployment among people with epilepsy who were able to work was five times higher than the national rate at the time. Side effects of seizure medications were a problem for many; the most common concerns noted were cognitive problems and impacts on energy level, school performance, motor skills coordination, having children, and sexual func- tion (Fisher et al., 2000b). Similarly, in focus groups of people with epilepsy in South Carolina, many participants said they had to change life plans due to having epilepsy (Sample et al., 2006). These and similar surveys reinforce well-documented challenges for many people with epilepsy that extend beyond medical care. The need to treat the whole person and family often requires a network of professionals and agencies across a variety of health care and community settings (Chapters 4 and 6). Educating People with Epilepsy and Their Families Much is being done and more is needed to educate people with epilepsy and their families about the disorder, the range of treatment options, and the array of community services that might be helpful to achieve optimal self-management10 (Chapter 7). Access to information about topics such as 10 Self-management for epilepsy includes the information and resources that people with epilepsy and their families need to develop skills and behaviors that enable them to actively

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39 INTRODUCTION diagnosis, prognosis, treatment, strategies for injury prevention and healthy living, employment rights and protections, and self-management skills can increase the individual’s (and family’s) sense of empowerment, promote adaptation to the disorder, and enhance overall quality of life (Couldridge et al., 2001). Because of the complexity of epilepsy and the varied cultural percep- tions connected to the disorder, both health literacy and attention to cul- tural considerations are particularly relevant. Health literacy is understood as “the degree to which individuals have the capacity to obtain, communi- cate, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan and Parker, 2000, p. vi). Nearly 9 out of every 10 adults in the United States have limited health literacy (many have limited general literacy as well), and although limited health literacy is widespread and not specific to any sociodemographic group, it disproportionately affects certain population subgroups, includ- ing people in lower socioeconomic groups, racial/ethnic minorities, people with disabilities, and older adults (Grabois et al., 1999; Kutner et al., 2006; ODPHP, 2010). Kutner and colleagues (2006) found that only 12 percent of English-speaking U.S. adults have “proficient” health literacy skills. Ensuring that health information is conveyed in ways that are understand- able and take into account cultural considerations is key to making sure that all people with epilepsy have the tools to understand and deal with their disorder and attain optimal quality of life. Health literacy is not solely attributable to the characteristics of the individual but also reflects the ef- forts of the health care and educational systems, and much can be done to provide information that is easily and well understood. Biomedical Research on Epilepsy This report comes at a time when the number of new discoveries about the brain and its associated disorders is increasing rapidly, and in- novative tools and approaches continue to be developed and refined that can allow researchers to examine the mechanisms of a range of neurologi - cal disorders. As a result, improved treatments and, ultimately, preven- tive measures and cures may become possible. Although it is not within the purview of this report to examine the biomedical research agenda, it is important to acknowledge that recent biomedical research advances in epilepsy include improving the understanding of the mechanisms of participate in patient-centered care; it is “the sum total of steps taken and processes used by a person to control seizures and manage the effects of having a seizure disorder” (DiIorio, 1997, p. 214). The committee adopted the concept of “optimal self-management,” recognizing that it represents a wide range of possibilities toward autonomy and independence and that what is optimal for one person may be beyond the capacity of another (Chapter 7).

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40 EPILEPSY ACROSS THE SPECTRUM epileptogenesis; identifying clinical and genetic correlations of epilepsy; exploring and refining prevention and treatment options; and improving technologies for imaging. The NINDS, in collaboration with many professional and voluntary epilepsy organizations and stakeholders, held two Curing Epilepsy Con- ferences that developed and updated the Epilepsy Research Benchmarks (NINDS, 2007b, 2010). The first, held in 2000, developed benchmarks for a research agenda to cure epilepsy. A follow-up conference in 2007 demon- strated many biomedical advances toward this goal, identified critical areas needing further attention, and focused new attention on the comorbidities that complicate epilepsy. The benchmarks continue to be updated to reflect progress in epilepsy-related research (NINDS, 2010). Key areas of focus in the benchmarks, and in National Institutes of Health (NIH) research initia- tives in general, are in translating basic research into practical applications and comparative effectiveness studies to identify effective interventions (NIH, 2011a,b). The level of epilepsy research funding at the NIH in fiscal year 2011 was estimated to be $134 million (Meador et al., 2011).11 An analysis by Meador and colleagues (2011) found that epilepsy—the third most preva- lent of the six neurological diseases examined—gets less funding than the other disorders when adjusted for prevalence (comparisons ranged from 1.7 times as much funding for stroke to 61.1 times as much for amyotrophic lateral sclerosis). To date, treatment of epilepsy has been focused on sup- pressing seizures rather than curing the disorder. With further research it is hoped that symptomatic treatment will be replaced with curative treatment and with prevention strategies. Mobilizing the Public Health Response to Epilepsy A number of organizations are working on research, programs, and policies to improve health and human services for people with epilepsy and their families, as well as being active in promoting prevention, education, and awareness of epilepsy. Many of the recent public health efforts focused on epilepsy, particularly in the United States, draw from the initiatives and priorities put forth by the 1978 U.S. Commission for the Control of Epi- lepsy and Its Consequences (U.S. Commission for the Control of Epilepsy and Its Consequences, 1978) and the Living Well with Epilepsy conferences held in 1997 and 2003 (AES et al., 2004; CDC et al., 1997). Sponsored by the Centers for Disease Control and Prevention, the Epilepsy Foundation, the American Epilepsy Society, the National Association of Chronic Disease Directors, and the National Association of Epilepsy Centers, the Living 11 Actual spending in fiscal year 2011 was $152 million (NIH, 2012).

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41 INTRODUCTION Well conferences spearheaded the development of a public health agenda for the epilepsies and resulted in a set of recommendations and goals that a range of research, public policy, community service, and advocacy efforts have since pursued. The following collaborative public health initiatives highlight coordi- nated efforts that are under way. Other examples are provided throughout the report of the many organizations and individuals working to prevent, treat, and cure epilepsy and its comorbidities: • The Vision 20-20 coalition was formed in 2004 and originally brought together five nonprofit organizations and one federal agency focused on epilepsy research. Initially the organizations shared progress on their own initiatives and funding resources and explored areas for collaboration. As of January 2012, 22 organi- zations and 3 federal agencies are part of the coalition and work through joint meetings and subgroups to develop and promote a “common message” that can be used to support efforts in epilepsy prevention, health care, research, and public awareness (Personal communication, Margaret Jacobs, American Epilepsy Society, Jan- uary 5, 2012). • The U.S. Department of Health and Human Services has orga- nized an Interagency Collaborative to Advance Research in Epi- lepsy with membership from 20 federal agencies, as well as from research and advocacy groups (NINDS, 2011a). Vision 20-20 representatives are also invited to participate in the interagency working group. • Globally, the ILAE, the International Bureau of Epilepsy, and the World Health Organization have led efforts, including the Global Campaign Against Epilepsy: Out of the Shadows, to increase public awareness and education about epilepsy and eliminate the barriers and stigma often associated with it (WHO, 2011). The campaign supports public and professional education and awareness, identi- fies service gaps and supports demonstration projects for national and regional areas, and promotes involvement of government and public health departments to target the needs of people with epi- lepsy (ILAE, 2011b; WHO, 2011). • The Pan American Health Organization (PAHO) recently endorsed a Strategy and Plan of Action on Epilepsy (PAHO, 2011). This resolution encourages the more than 35 member nations of PAHO to develop national programs for epilepsy. Similar efforts by Eu- ropean Union nations in 2011 resulted in a Written Declaration on Epilepsy that urges research, policy assessment, and equitable services relevant to epilepsy (ILAE, 2011a).

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42 EPILEPSY ACROSS THE SPECTRUM CROSS-CUTTING THEMES Throughout this report several cross-cutting themes are highlighted by the committee: Epilepsy is a common and a complex neurological disorder. Epi- • lepsy is not a single disorder but rather a spectrum of disorders— the epilepsies. Further, epilepsy is more than seizures and may be accompanied by a range of associated comorbid health condi- tions that can have significant health and quality-of-life implica- tions. Some people with epilepsy have lives that are essentially unchanged, while others’ health and well-being are severely af- fected, and for some people, epilepsy is fatal. Communicating this range of outcomes and meeting the spectrum of needs are major challenges faced by the epilepsy field. Epilepsy often affects quality of life. For many individuals with • epilepsy and their family members, living with epilepsy means challenges in school and work, social functioning and relationship dynamics, limits on driving, and daily worries about the possibility of seizures. A whole-patient perspective is needed. Because the effects of epi- • lepsy go beyond health concerns and seizures, a whole-patient, patient-centered perspective is needed that provides people with ep- ilepsy, their families, and caregivers with a coordinated, individual- specific approach to health care, mental health care, educational opportunities, and community services and promotes optimal self- management and quality of life. Effective treatments are available for many types of epilepsies, • but timely referrals and access to those treatments fall short. For many people with epilepsy, seizures can be effectively reduced or eliminated by medications, surgery, devices, and dietary or other therapies. However, in the United States, referrals to epileptologists and epilepsy centers for surgical consultations can take 15 years or more. Data are lacking that could improve epilepsy care. Accurate, timely • data on the extent and consequences of epilepsy and comorbid conditions and on health care and community services use and outcomes are sorely needed to make improvements in epilepsy prevention; diagnosis; health care access, quality, and value; and community services. Many health professionals need to be better informed about ep- • ilepsy. Improvements in epilepsy care can be made only if the quality and quantity of education about epilepsy for health care

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43 INTRODUCTION professionals are improved dramatically through undergraduate and graduate levels and lifelong learning programs. Education efforts for people with epilepsy and their families need • to be thorough and sensitive to health literacy and cultural con- siderations. Across the continuum from initial diagnosis through ongoing treatments and services, people with epilepsy and their families need to be aware of the disorder’s potential risks, including SUDEP, and the range of treatments and services available. Infor- mation must be conveyed in ways that are easily understandable and relevant to specific age groups and cultures. The stigma associated with epilepsy needs to be eliminated. The • long history of epilepsy is full of examples of discrimination and secrecy due to misinformation and lack of understanding by the general public. Since stigma can have a detrimental effect on people with epilepsy, continued and sustained efforts are needed to raise public awareness and convey what epilepsy is and what it is not, as well as the basic messages embodied in these themes. REFERENCES AAP (American Academy of Pediatrics) Subcommittee on Febrile Seizures. 2011. Febrile seizures: Guideline for the neurodiagnostic evaluation of the child with a simple febrile seizure. Pediatrics 127(2):389-394. AES (American Epilepsy Society), CDC (Centers for Disease Control and Prevention), Chronic Disease Directors, Epilepsy Foundation, and NAEC (National Association of Epilepsy Centers). 2004. Living Well with Epilepsy. II: Report of the 2003 National Conference on Public Health and Epilepsy: Priorities for a public health agenda on epilepsy. http:// www.cdc.gov/epilepsy/pdfs/living_well_2003.pdf (accessed February 2, 2012). Arnautova, E. N., and T. N. Nesmeianova. 1964. A proposed international classification of epileptic seizures. Epilepsia 5:297-306. Baker, G. A., E. Hargis, M. M.-S. Hsih, H. Mounfield, A. Arzimanoglou, T. Glauser, J. Pellock, S. Lund, and the International Bureau for Epilepsy. 2008. Perceived impact of epilepsy in teenagers and young adults: An international survey. Epilepsy and Behavior 12(3):395-401. Baxendale, S. 2003. Epilepsy at the movies: Possession to presidential assassination. Lancet Neurology 2(12):764-770. Bazil, C. W., and T. A. Pedley. 2009. Epilepsy. In Merritt’s neurology. 12th ed., edited by L. P. Rowland and T. P. Pedley. Philadelphia, PA: Lippincott Williams and Wilkins. Pp. 927-948. Begley, C. E., M. Famulari, J. F. Annegers, D. R. Lairson, T. F. Reynolds, S. Coan, S. Dubinsky, M. E. Newmark, C. Leibson, E. L. So, and W. A. Rocca. 2000. The cost of epilepsy in the United States: An estimate from population-based clinical and survey data. Epilepsia 41(3):342-351. Berg, A. T., S. Shinnar, S. R. Levy, F. M. Testa, S. Smith-Rapaport, B. Beckerman, and N. Ebrahimi. 2001. Two-year remission and subsequent relapse in children with newly diagnosed epilepsy. Epilepsia 42(12):1553-1562.

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