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Summary
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 adulthood.
Epilepsy is a spectrum of disorders1—the epilepsies—with a range of se-
verities, widely differing seizure types and causes, an array of coexisting
conditions, and varying impacts on individuals and their families. Epilepsy
is the fourth most common neurological disorder in the United States after
migraine, stroke, and Alzheimer’s disease; it is estimated that 150,000 new
cases are diagnosed in the United States annually and that 1 in 26 individu-
als will develop epilepsy at some point in their lifetime.
While seizures are well controlled with medications and other treat-
ment options for the majority of people with epilepsy, the impact of epi-
lepsy goes well beyond the seizures. The challenges facing the estimated 2.2
million people with epilepsy in the United States include having access to
high-quality health care, becoming informed about and coordinating health
care and community services, and dealing with stigma and common public
misunderstandings. Living with epilepsy, particularly for people with refrac-
tory seizures, can involve challenges in school, uncertainties about social
and employment situations, limitations on driving, and questions about
independent living. Epilepsy can impose an immense burden on individuals,
1 This summary does not include definitions of terminology used throughout the report;
discussion of various epilepsy disorders, syndromes, or comorbidities; or explanations of the
derivation of statistics that are presented and their references. Discussion of these areas and
citations for the information presented in the summary appear in subsequent chapters of the
report.
1
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2 EPILEPSY ACROSS THE SPECTRUM
families, and society; the estimated annual direct medical cost of epilepsy in
the United States is $9.6 billion, which 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). Further, epilepsy is associated with substantially higher rates
of mortality than experienced in the population as a whole, with sudden
unexpected death in epilepsy (SUDEP) being the most common cause of
epilepsy-related deaths. Estimates indicate that 10 years of life are lost for
people whose epilepsy has a known cause and 2 years are lost for people
with epilepsy from an unknown cause. Additionally, estimates of the num-
ber of people with epilepsy who die of SUDEP range from 1 of every 10,000
newly diagnosed to 9 of every 1,000 candidates for epilepsy surgery.
A significant challenge for people with epilepsy, as well as for the epi-
lepsy field, has been the multitude of ways that epilepsy is perceived and, in
many cases, misperceived. The centuries of misperceptions and misinforma-
tion about epilepsy have resulted in people with epilepsy being stigmatized.
As a consequence, people with epilepsy and their families may be faced
with a lack of social support from extended family members; feelings of
parental guilt; social isolation, embarrassment, and fear; and discrimina-
tion. Although efforts are being made to correct these misconceptions and
to better inform people about the epilepsies, doing so remains a challenge.
Throughout this 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 experi-
encing 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 childhood
disorder that goes into remission (although the seizures may have lifelong
consequences), while for others it is a lifelong burden or a condition that
develops later in life or in response to an injury or other health condition.
These many complexities of epilepsy make it a challenging health condi-
tion to convey to the general public to promote understanding 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:
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3
SUMMARY
• 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 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
and collaborating agencies and organizations. To accomplish its task, the
IOM convened the Committee on the Public Health Dimensions of the
Epilepsies, which comprised 17 members with expertise 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. Many of these sponsors
are part of Vision 20-20, a coalition that focuses on epilepsy research, care,
services, education, and advocacy efforts.
A VISION FOR THE FUTURE
Throughout its report, research priorities, and recommendations, the
committee describes its vision for achieving a better understanding of the
public health dimensions of the epilepsies and for promoting health and
understanding. The committee’s vision for the future involves
• epilepsy surveillance efforts that include the development of active
and passive data collection systems that are coordinated, compre-
hensive, accurate, and timely and that follow standardized meth-
odologies to obtain valid measurement;
• enhanced prevention programs and well-designed epidemiologic
studies that highlight areas ripe for further preventive efforts;
• access to patient-centered care for all individuals with epilepsy that
incorporates a comprehensive and coordinated approach to both
health and community services in order to meet the range of physi-
ological, psychological, cognitive, and social needs;
• care and community resources that reflect current research findings
and best practices in clinical care, education, and coordination in
order to provide each person with the best care, in the right place,
at the right time, every time;
• a health care workforce sufficiently prepared to provide every
person experiencing seizures with effective diagnostic, treatment,
and management services that are delivered through team-based
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4 EPILEPSY ACROSS THE SPECTRUM
approaches to care and that take into consideration health literacy,
cultural, and psychosocial factors;
• access to relevant and usable knowledge for all individuals with
epilepsy and their families that meets their individual needs and
allows them to participate effectively in patient-centered care, to
achieve optimal self-management of their epilepsy, and to attain the
highest possible physical and emotional well-being; and
• an improved public understanding of what epilepsy is—and is
not—that supports the full inclusion of people with epilepsy at all
levels of society and that eliminates stigma.
Much of this vision resonates with broad goals of chronic disease man-
agement, and to achieve it, collaborative efforts with professionals and
organizations involved with other conditions, especially those that are
comorbidities of epilepsy, will help to maximize resources and progress.
Critical to realizing this vision will be additional research to further develop
the evidence base as outlined in the research priorities in Chapter 9.
INCREASING THE POWER OF EPILEPSY DATA
Comprehensive, timely, and accurate epilepsy surveillance data are
needed to provide a better understanding of the burden of the disorder, its
risk factors and outcomes, and health services needs. Current data sources
provide a patchwork of surveillance activity that substantially limits the
ability to understand, plan, and guide the provision of policies related to
health care for people with epilepsy. Improvements are necessary to enable
informed and effective action in prevention; health care quality, access, and
value; quality of life and community services; and education and awareness.
At present, public health researchers, policy makers, and advocates are
“flying blind” due to the lack of adequate epilepsy surveillance data. The
nation’s data system for epilepsy can be strengthened by the collection of
epilepsy-specific data and through collaborations with existing and emerg-
ing data-sharing efforts across health care providers and with other chronic
diseases and disorders.
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
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5
SUMMARY
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
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.
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6 EPILEPSY ACROSS THE SPECTRUM
PREVENTING EPILEPSY
An important first step in designing programs to prevent epilepsy and
its consequences is the identification of risk factors, comorbidities, and
outcomes for epilepsy. At present, many research questions and gaps remain
where more complete information could provide a sound basis for preven-
tion, including in public health, clinical care, education programs, and
community efforts. Neurocysticercosis2 is a growing concern in the United
States and represents a known risk factor for epilepsy—one in which fun-
damental improvements in education and sanitary measures could decrease
a specific infection that causes epilepsy. Continued intervention efforts are
needed to prevent the occurrence of traumatic brain injury (TBI), through
mechanisms such as the use of seatbelts, to prevent TBI associated with mo-
tor vehicle accidents, as well as helmets, including improved helmet design,
to reduce the occurrence and severity of TBI in sports and military combat.
In addition, progress in the prevention of epilepsy’s other risk factors—such
as stroke, through targeted efforts to reduce risk factors, and brain infec-
tions such as meningitis, through sustained vaccination programs—will
likely result in fewer new cases of epilepsy. Further options for primary
prevention may come to light if epidemiologic studies identify other risk
factors for epilepsies whose etiologies are currently unknown. Secondary
prevention of seizures may be possible through the use of antidepressants.
Prevention efforts are needed that target felt stigma and specific risk factors
for death due to accidents and suicide among people with the epilepsies.
Additionally, risk factors for SUDEP have been described, but interventions
to reduce the occurrence of this devastating outcome have not been evalu-
ated in those at highest risk.
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., TBI, stroke, brain infections such as meningitis);
• reventing continued seizures in people with epilepsy and
p
depression;
• educing felt stigma; and
r
2 Neurocysticercosis is a parasitic brain infection that can cause epilepsy (Chapter 3).
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7
SUMMARY
• reventing epilepsy-related causes of death, including accidents
p
and injuries, SUDEP, and suicide.
IMPROVING HEALTH CARE
Improving the lives of people with epilepsy and their families, to a
large extent, begins with access to high-quality, patient-centered health
care that facilitates accurate diagnosis and effective treatments and man-
agement. While significant progress has been made in developing seizure
medications with fewer adverse effects, as well as in refining devices and
surgical techniques for specific types of epilepsy, much remains to be done
to reduce the sometimes lengthy delays in diagnosis and referral to more
advanced levels of care and to improve care for those with refractory epi-
lepsy. Currently, troubling disparities are suggested in the research, based
on racial, ethnic, and socioeconomic factors. High-quality health care for
the epilepsies cannot be provided on a population basis until the problems
of accessibility, efficiency, and equity are resolved. An important element
in high-quality care is access to specialized epilepsy 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. Developing and maintaining a
national quality measurement and improvement strategy is another critical
component of ensuring high-quality epilepsy care. This strategy would help
hold providers accountable for adherence to practice guidelines through the
standardization and implementation of quality metrics.
Building the health care workforce’s knowledge base and skill sets in
diagnosing, treating, supporting, and generally working with people with
epilepsy is also necessary to ensure that people with epilepsy and their
families have access to high-quality care. Health professionals need current
knowledge about many aspects of the epilepsies: seizure recognition and
diagnosis; prevention strategies and treatment options; associated risks,
comorbidities, and safety concerns; necessary social services; psychosocial
and quality-of-life factors; and the need to counter 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.
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
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8 EPILEPSY ACROSS THE SPECTRUM
federal agencies (including the CDC and Health Resources and Services
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 Qual-
ity 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-
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9
SUMMARY
laborate with relevant organizations to establish accreditation criteria
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;
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
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10 EPILEPSY ACROSS THE SPECTRUM
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).
• 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
The burden of seizures and epilepsy, particularly severe forms of epi-
lepsy, can be overwhelming for many people with epilepsy and their fami-
lies. The social and emotional toll of care can place financial and emotional
strains on marriages and families and can alter roles, relationships, and
lifestyles. Many speakers at the committee’s workshops emphasized that
epilepsy—regardless of its level of severity—creates life challenges because
of the unpredictability of seizures. This report examines the range of com-
munity services—daycare and school, employment, transportation, hous-
ing, 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
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11
SUMMARY
• 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.
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;
• 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;
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12 EPILEPSY ACROSS THE SPECTRUM
• rovide a 24/7 nonmedical help line offering information on epi-
p
lepsy and links to community resources (this effort should involve
collaboration with similar efforts for related health conditions);
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
Research consistently demonstrates that many people with epilepsy do
not have a solid understanding of basic information about their condition—
how it is diagnosed, seizure precipitants or triggers, types of seizures, the
purpose and potential side effects of seizure medications, safety concerns,
and the risks and potential consequences of seizures. Additionally, the diag-
nosis of epilepsy, although given to an individual, affects the entire family
and its constellation of friendships and other relationships. At onset all
are confronted with the immediate need to learn about the disorder, and
their information needs continue throughout the course of treatment and
management.
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 requisite knowledge and skills related to epilepsy and its man-
agement can also promote optimal well-being and quality of life for people
with epilepsy and their families, help prevent misconceptions about the
condition, and reduce concerns about stigma.
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
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13
SUMMARY
and culturally appropriate for targeted audiences. This requires
thorough testing of content with target audiences, including un-
derserved groups, and revision as necessary.
• 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 some surveys have suggested that attitudes regarding epilepsy
have become less negative over time, it is not certain how contemporary
attitudes compare and whether overall improvements in attitudes have af-
fected behavior. Compelling testimony from families dealing with epilepsy
and research on employment suggest that problems of stigma remain wide-
spread. Efforts to increase public awareness and knowledge are motivated
by the expectation that information that reduces misconceptions and mis-
information will improve attitudes and, ultimately, behavior toward people
with epilepsy and thereby reduce stigma. Stigma, whether felt or overtly
experienced, 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 sig-
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14 EPILEPSY ACROSS THE SPECTRUM
nificant sources of health information. Unfortunately, inaccurate depictions
of people with epilepsy and of severe seizures, used for dramatic effect,
reinforce negative perceptions. Clear messages conveyed through multiple
forms of media, including social media and the Internet, along with diverse
educational activities targeted to specific audiences, are necessary for suc-
cessful stigma reduction and public awareness efforts. Any such efforts,
local or national, should take into account the health literacy and cultural
characteristics of target audiences, with different strategies developed for
reaching each audience.
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
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 epi-
lepsy 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,
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15
SUMMARY
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);
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 and research organizations and government agencies
are working together to create a strong, united voice for change. Efforts
are being made by a number of organizations to advance research and to
improve health care and human services for people with epilepsy and their
families. One of the impressive collaborative efforts is the uniting of more
than 20 nonprofit organizations and 3 federal agencies in the Vision 20-20
coalition, which focuses on moving the epilepsy field forward through coor-
dinated efforts and the development of public-private partnerships. Vision
20-20 could be the driving force for developing strategies and plans for
implementation of this report’s research priorities and recommendations,
including monitoring and evaluating 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.
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-
plore partnerships with other organizations as well as with stakehold-
ers who represent related conditions (e.g., mental health, TBI, stroke,
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16 EPILEPSY ACROSS THE SPECTRUM
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:
• ealth policy, health reform, and advocacy;
h
• urveillance and epidemiologic and health services research;
s
• ealth care and community resources and services;
h
• ducation of health professionals;
e
• ducation of people with epilepsy and their families; and
e
• ublic education and awareness.
p
ENGAGING PEOPLE WITH EPILEPSY AND THEIR FAMILIES
Among the most persuasive advocates and educators are people with
epilepsy and their family members who are willing to speak out in order
to provide a more complete 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;
• 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;
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17
SUMMARY
• 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.
PROMOTING HEALTH AND UNDERSTANDING
Much can be done to improve the lives of people with epilepsy. This
report highlights numerous gaps in knowledge about and management
of epilepsy and also presents opportunities to move the field forward.
Improvements in surveillance 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 system offers an opportunity to
improve the lives of this large patient group. Preparing health profession-
als to provide better epilepsy care, although a challenge, will help improve
quality and reduce costs. Consistent delivery of accurate, clearly communi-
cated 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 the epilepsies among the general public will reduce
stigma and enable the participation of people with epilepsy in society to the
fullest extent of their capabilities. Through collaboration and commitment
over time, the bold goals outlined in the committee’s recommendations can
be accomplished.
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