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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.
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