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9
Next Steps and Recommendations
P
eople with epilepsy face a number of challenges, from living with
seizures and comorbidities to dealing with side effects of treatments
and the increased chance of early death. They encounter a health
system that does not consistently provide care that is accessible and of
high quality and value, and their care is poorly coordinated among health
care providers and across health care and community services. To provide
high-quality care, the health professionals who care for people with epilepsy
need to know more about epilepsy, its diagnosis, and its treatment and
management, as well as its comorbidities and the risk of premature death.
Given the range of effects that epilepsy has on quality of life, people with
epilepsy and their families often need a variety of community services, but
work remains to ensure that these services are consistently available and
evidence based. Furthermore, people with epilepsy and their families have
significant information needs about epilepsy and its management, which
must be appropriately communicated and tailored to their specific situa-
tions (e.g., age, gender, cultural background, literacy level). Finally, many
people with epilepsy continue to confront stigma, which results from so-
ciety’s limited awareness and understanding of epilepsy. Underpinning all
of these challenges are significant gaps in information about the number
of people who have epilepsy, the health care and other services they use,
and opportunities for prevention of epilepsy and its range of consequences.
Given the current gaps in epilepsy knowledge, care, and education, the
committee believes there is an urgent need to take action—across multiple
dimensions—to improve care and services for people with epilepsy and
their families. With this goal in mind, the committee examined the available
425
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426 EPILEPSY ACROSS THE SPECTRUM
evidence on surveillance, epidemiology, prevention, health care, community
services, and education programs and campaigns and then developed rec-
ommendations and priorities for further research to improve these fields
and the programs relevant to epilepsy. The following evidence-based recom-
mendations aim to present realistic, feasible, and action-oriented steps that
a variety of stakeholders can take to enable short- and long-term improve-
ments for people with epilepsy. The research priorities provide directions
for further developing the evidence base.
INCREASING THE POWER OF DATA AND PREVENTING EPILEPSY
Ideally, a coordinated and comprehensive surveillance system for the
epilepsies would collect data in several ways. To shed light on national
trends and patient outcomes, surveillance would be longitudinal and
nationally representative, enabling subgroup analysis by epilepsy type,
population characteristics, and environmental factors. The nation’s data
collection efforts should be sufficiently robust to support active research
projects on specific topics, but large amounts of data also can be collected
passively, including through the increasing use of electronic health records,
where well-designed databases can be mined for new insights. Given the
ambition of this goal and the current economic environment, the committee
has identified several priority areas that need attention, in order to improve
the collection and utilization of epilepsy data over time:
• Surveillance data must be up to date, representative of the U.S.
population, and collected using standardized methods to ensure
validity and comparability across studies.
• Multiple data sources have to be linked to capture all of the neces-
sary data on people with epilepsy and to avoid duplicate counting.
New data sources, including those that may develop under health
care reform, need to be reviewed for their potential to contribute
to an understanding of epilepsy.
• Once more robust data are available, analyses should be performed
to determine overall incidence, prevalence, health disparities, ser-
vices use and costs, quality of and access to care, risk factors,
comorbidities, health status, and quality-of-life outcomes, as well
as data for specific subgroups.
A variety of efforts is needed to accomplish comprehensive surveillance
of the epilepsies, close current knowledge gaps, and adequately inform
policy makers, public health agencies, health care providers, and the general
public. Coordinated action on multiple fronts will ensure the collection of
epilepsy-related data from a range of data sources.
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NEXT STEPS AND RECOMMENDATIONS
The strengthened usefulness and diversity of data, as described above,
would facilitate the identification of risk factors for epilepsy, comorbidities,
and adverse events. Risk factor identification is an important first step in
designing programs to prevent epilepsy and its most serious consequences.
At present, many research questions and gaps remain where more complete
information could provide a sound basis for prevention, including in public
health, clinical care, education programs, and community efforts.
RESEARCH PRIORITIES FOR IMPROVING
Box 9-1
SURVEILLANCE AND PREVENTION
To improve surveillance and prevention of epilepsy and its consequences, the
following areas should be considered priorities for future research:
• tudies to identify effective interventions for epilepsy accompanied by
S
mental health comorbidities
• tudies that test whether treatment of comorbid mental health conditions
S
ameliorates adverse outcomes
• ase-control studies of risk factors for injuries, suicide, status epilepticus,
C
and sudden unexpected death in epilepsy (SUDEP)
• opulation-based studies using existing data resources that have included
P
epilepsy, such as the National Survey of Children’s Health
• tudies to examine the capacity of data systems to link seizure medication
S
use and birth outcomes
• ontinued research on the risk factors for epilepsy of unknown, genetic,
C
or presumed genetic causea
• tudies on the directionality of the relationship between epilepsy and its
S
comorbidities, risk factors for developing an epilepsy comorbidity, and
prognosis of epilepsy in people with comorbidities present before the
onset of epilepsy
• longitudinal study that examines epilepsy’s outcomes (for example, a
A
study of cognition in people with different syndromes, seizure types, and
seizure frequencies that includes a sufficient number of older adults to
enable studies of risk factors for cognitive deterioration)
• ong-term prospective studies that examine the effects of epilepsy sur-
L
gery on cognitive function and that include appropriate control groups
• tudies or analyses that inform new approaches to randomized controlled
S
trials in epilepsy, in order to minimize the time spent on placebo or on a
study drug that is ineffective and thus minimize the risk for SUDEP
• tudies that develop and evaluate educational programs to improve the
S
knowledge of coroners and medical examiners about SUDEP and other
epilepsy-related deaths
• valuation of behavioral interventions on health outcomes and quality of
E
life for people with epilepsy
• evelopment of screening methods and criteria to identify children with
D
epilepsy and cognitive comorbidities through the use of educational
records
aPreviously known as idiopathic or cryptogenic.
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428 EPILEPSY ACROSS THE SPECTRUM
RECOMMENDATION 1 Validate and Implement Standard Defini-
tions and Criteria for Epilepsy Case Ascertainment, Health Care and
Community Services Use and Costs, and Quality-of-Life Measurement
The Centers for Disease Control and Prevention (CDC), in collabo-
ration with professional organizations (e.g., the American Epilepsy
Society [AES] and International League Against Epilepsy [ILAE]) and
other federal entities, including the Centers for Medicare and Medicaid
Services, Department of Defense, Department of Veterans Affairs, and
National Institutes of Health (NIH), should fund demonstration proj-
ects to validate and implement standard definitions for epilepsy case
ascertainment, health care and community services use and costs, and
measures of quality of life for use in different data collection systems
and for different specific objectives. Once validated, these definitions
and criteria should be adopted by funding agencies and used in surveil-
lance and research, which is the basis for planning and policy making.
RECOMMENDATION 2 Continue and Expand Collaborative Sur-
veillance and Data Collection Efforts
The CDC should continue and expand its leadership in epilepsy surveil-
lance and work with state and local public health researchers, academic
researchers, and other relevant stakeholders (including other agencies
within the Department of Health and Human Services). Surveillance
efforts should be funded that use large, representative samples to deter-
mine the overall incidence and prevalence of epilepsy—and mortality—
over time as well as in specific populations (e.g., different types of
epilepsy, ages, genders, races/ethnicities, socioeconomic statuses). Data
collection efforts should include the following:
• opulation health surveys should expand their questions about
P
epilepsy, its comorbidities, and health care services use and in-
clude these questions more frequently and consistently.
• xisting registries for comorbid conditions, such as the Surveil-
E
lance, Epidemiology, and End Results program and state-based
cancer registries, state-based Alzheimer’s registries, and the In-
teractive Autism Network, should collect data on epilepsy.
• fforts should be expanded to standardize the practices of coro-
E
ners and medical examiners in evaluating and recording cause of
death in people with epilepsy with the goal of working toward
a national epilepsy-related death registry.
• ilot projects should explore the linkage and use of emerging
P
data collection and sharing partnerships using electronic health
records and other electronic repositories (e.g., all-payer claims
databases, regional health information organizations, the Health
Maintenance Organization Research Network, NIH’s Health
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NEXT STEPS AND RECOMMENDATIONS
Care Systems Research Collaboratory, the Health Care Cost
Institute) for epilepsy surveillance and research.
• pilepsy-specific data should be included in the NIH National
E
Children’s Study and future longitudinal studies.
RECOMMENDATION 3 Develop and Evaluate Prevention Efforts
for Epilepsy and Its Consequences
The CDC should partner with the World Health Organization, ILAE,
NIH, the Action Alliance for Suicide Prevention, and other stakehold-
ers to develop and evaluate culturally appropriate and health literate
prevention efforts that focus on
• reventing neurocysticercosis in high-risk populations;
p
• ontinuing prevention efforts for established risk factors of epi-
c
lepsy (e.g., traumatic brain injury [TBI], stroke, brain infections
such as meningitis);
• reventing continued seizures in people with epilepsy and
p
depression;
• educing felt stigma; and
r
• reventing epilepsy-related causes of death, including accidents
p
and injuries, sudden unexpected death in epilepsy (SUDEP), and
suicide.
IMPROVING HEALTH CARE
The many challenges that people with epilepsy and their families face
are so diverse, even from a medical point of view, that although treatment
must continue to be held to high standards, it nevertheless should be tai-
lored to individual patient needs and characteristics, and no single health
professional discipline can provide all of the elements required for high-
quality epilepsy care. Historically, persuading health professionals to work
across professional boundaries has been difficult. One of the challenges for
government and institutional policy makers will be to devise organizational
structures and incentive systems that make it easy—even attractive—for
people from multiple professions to work together.
Throughout this report, the committee has emphasized a number of
important elements of epilepsy care including
• patient centeredness, recognizing that the “patient” may include
the family, that people with epilepsy are more than their medical
condition, and that quality-of-life factors are also important;
• co-management for patients with comorbid conditions whose care
may cross specialty boundaries;
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430 EPILEPSY ACROSS THE SPECTRUM
• coordination, involving a team of professionals across disciplines
and sectors (e.g., housing, education, employment);
• community orientation, with the engagement of as many commu-
nity resources as needed; and
• education focused, in order to improve the self-management skills
of people with epilepsy and their family members, clinicians’
knowledge and skills, and the awareness and understanding of
others who interact with people with epilepsy (e.g., teachers, social
workers, emergency personnel).
Even in an ideal system of care, the epilepsies will remain complex to
diagnose and treat. While significant progress has been made in developing
seizure medications with fewer adverse effects, as well as in refining medical
devices and surgical techniques for select types of epilepsy, much remains
to be done to reduce the sometimes lengthy delays in diagnosis and referral
to more advanced levels of care, to improve care for those with refrac-
tory epilepsy, and to provide a better response to comorbidities, including
mental health conditions. While this committee was asked not to explore
biomedical research, over time there will be advances in this field that need
to move into routine care in a timely and equitable fashion. No matter how
specific epilepsy treatments have improved, currently care is not uniformly
accessible due to geographic, economic, and other considerations; nor is it
necessarily equitable, with troubling disparities suggested in the research
that are based on racial/ethnic and socioeconomic factors. High-quality
health care for epilepsy cannot be provided on a population basis until the
problems of accessibility and equity are resolved.
An important element in high-quality care is access to specialized epi-
lepsy centers, especially for people with refractory epilepsy. Epilepsy centers
are vital in providing specialized epilepsy care and have the potential to
build on their current efforts by forming a network for health professional
education, clinical research, and data collection and analysis. To ensure
the ongoing quality of their work, as well as appropriate recognition for it,
the centers should develop a robust external accreditation process. A na-
tional quality measurement and improvement strategy for epilepsy should
be developed and implemented. Standardization and implementation of
quality metrics will hold health care providers accountable for adherence
to practice guidelines and will allow people with epilepsy and their families
to have more information in selecting care providers.
Expanding access either to specialized epilepsy care or to high-quality
care in community settings is hampered by the shortage of clinicians with
adequate knowledge and skill related to epilepsy and its comorbidities.
Research suggests that primary care and specialist physicians alike have
significant gaps in knowledge about epilepsy. Further, many types of health
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NEXT STEPS AND RECOMMENDATIONS
RESEARCH PRIORITIES FOR IMPROVING HEALTH CARE
Box 9-2
To improve health care for people with epilepsy, the following areas should be
considered priorities for future research:
• evelopment of methods for early identification of and new treatment
D
approaches for refractory epilepsy
• evelopment of screening tools (useful in clinic settings) for the early
D
identification of people with epilepsy who have potential cognitive
impairments
• evelopment of decision-support tools for electronic health records for
D
use by primary care and emergency room providers regarding care of
persons with epilepsy, the use of screening tests, and referral steps for
further evaluation and care
• omparisons of the efficacy of brand and generic formulations of seizure
C
medications
• omparative effectiveness studies of epilepsy therapies and of treatments
C
used to manage epilepsy (including reducing medication side effects) and
comorbidities, with initial attention to setting priorities for this research
• ealth services research on the provision and effectiveness of epilepsy
H
care by primary care providers, neurologists, and epileptologists, including
referrals to epilepsy centers and to specialists for care of comorbidities
• ssessment of differences in the utilization of epilepsy health care services,
A
particularly for underserved populations
• tudies of the capacity of the workforce that cares for people with
S
epilepsy
• tudies that examine value measures for epilepsy care as well as potential
S
reductions in health care costs through changes in access to specialized
care and improved coordination with providers caring for comorbid health
conditions
• nalysis of cost savings by reducing emergency department use and
A
hospitalizations
• ssessment of incentive strategies for the participation of clinical staff
A
in collaborative service models and co-management of complex cases,
including strategies to promote timely referral to surgery, mental health
services, and higher levels of care
professionals, in addition to physicians, are involved in epilepsy care. These
include nurses, nutritionists, pharmacists, psychologists, and clinical social
workers. These professionals also must be current in their understanding of
epilepsy and its treatment, as well as the array of educational and commu-
nity resources that may be available to and needed by individual patients.
RECOMMENDATION 4 Improve the Early Identification of Epi-
lepsy and Its Comorbid Health Conditions
The AES and the American Academy of Neurology (AAN) should
lead a collaborative effort with the wide range of relevant professional
organizations (including primary care professional organizations) and
federal agencies (including the CDC and Health Resources and Services
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432 EPILEPSY ACROSS THE SPECTRUM
Administration), and others that promote and disseminate screening
programs to
• evelop and validate screening tests for the early identification of
d
epilepsy in at-risk populations (e.g., people with developmental
disabilities; people with mental health conditions; people who
have had a TBI, brain tumor, or stroke);
• stablish and disseminate a standard screening protocol for peo-
e
ple with epilepsy that implements screening on a regular basis
for comorbidities with currently approved screening tests (e.g.,
for bone disease, depression, generalized anxiety disorder); and
• stablish and disseminate a screening tool for the early identifica-
e
tion of patients with persistent seizures that would lead to earlier
referral to an epileptologist for further diagnosis and treatment.
RECOMMENDATION 5 Develop and Implement a National Quality
Measurement and Improvement Strategy for Epilepsy Care
The AES, in conjunction with other professional organizations involved
in epilepsy care, education, and advocacy (including primary care pro-
fessional organizations) should initiate the development of a national
quality measurement and improvement strategy for epilepsy care. An
independent organization with expertise in quality measurement and
care should assist in the development of the national strategy, particu-
larly the development of performance metrics. The national quality
improvement strategy should
• evelop and implement a plan to disseminate existing clinical
d
guidelines and educate health professionals and people with
epilepsy and their families about them;
• efine performance metrics for epilepsy with specific attention to
d
access to care for underserved populations, access to specialized
care, co-management of care among all health care providers,
and coordination of care with other health care providers and
community services organizations;
• ontinue the development and implementation of a set of perfor-
c
mance metrics that includes patient-generated measures; and
• evelop demonstration projects to validate performance metrics
d
and test the feasibility of tracking outcomes of care.
RECOMMENDATION 6 Establish Accreditation of Epilepsy Centers
and an Epilepsy Care Network
The National Association of Epilepsy Centers and the AES should col-
laborate with relevant organizations to establish accreditation criteria
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NEXT STEPS AND RECOMMENDATIONS
RESEARCH PRIORITIES FOR IMPROVING HEALTH
Box 9-3
PROFESSIONAL EDUCATION
To improve health professional education about epilepsy, the following areas
should be considered priorities for future research:
• dentification of knowledge gaps across health professions that relate to
I
areas such as seizure recognition and classification; new treatment op-
tions; sudden unexpected death in epilepsy (SUDEP); and appropriate
treatment modalities for specific subpopulations, including infants and
children, women, individuals with severe epilepsy syndromes, people with
complex comorbidities, and older adults
• evelopment and testing of educational interventions and incentives that
D
will expand the reach of education and training opportunities about epi-
lepsy and its associated comorbidities for health professionals outside of
the epilepsy field (e.g., primary care, psychiatry, psychology, nursing)
• ssessment of current attitudes and beliefs of U.S. health professionals
A
about epilepsy and the impact of these beliefs and attitudes on stigma
and on access to and quality of care
• valuation of curricula and content of advanced training programs for
E
physicians, nurses, and physician assistants for epilepsy-specific content
and identification of specific opportunities and strategies for improving
these types of programs
• valuation of innovative teaching strategies, such as online epilepsy educa-
E
tion and simulation programs, to determine their suitability as models for
a range of health professionals and others who interact with people with
epilepsy, including teachers, daycare workers, coaches, and social workers
• ssessment of the format and frequency of educational and training op-
A
portunities existing within epilepsy centers in order to establish best prac-
tices for engaging clinicians in continuous, interdisciplinary learning
• evelopment and assessment of educational interventions and resources
D
focused on communication skills and strategies for discussing sensitive
topics (e.g., SUDEP, suicide, risks associated with medication nonadher-
ence, treatment preferences)
and processes with independent external review mechanisms for the ac-
creditation of epilepsy centers. Accredited epilepsy centers should work
together to form an Epilepsy Care Network that includes data sharing,
clinical trial and other research networking, professional education,
and other collaborative activities.
• ndependently accredited epilepsy centers should
I
emphasize patient-centered care that focuses on co-management
approaches with primary care providers, mental health care
providers, and other specialists;
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434 EPILEPSY ACROSS THE SPECTRUM
ensure that community service providers are an integral part of
the centers and actively collaborate with them to link people
with epilepsy to services for all facets of the individual’s health
and well-being;
use standardized performance metrics for quality epilepsy care;
publicly report on a standard set of quality, outcome, and
health services data;
provide onsite education and training for epilepsy specialists
(e.g., technicians, nurses, researchers, physicians) as well as
educational opportunities, particularly continuing education,
for other health and human services professionals in the com-
munity; and
serve as sites for pilot projects on innovative approaches to
improving co-management and coordination of care, as well as
health care quality, access, and value for people with epilepsy.
• he Epilepsy Care Network of Accredited Epilepsy Centers
T
should
conduct collaborative clinical and health services research;
collect, analyze, and disseminate quality, outcome, and health
services data from all of the accredited centers; and
collaborate and partner with state health departments and other
health care providers to ensure coverage across rural and under-
served areas through telemedicine, outreach clinics, and other
mechanisms.
RECOMMENDATION 7 Improve Health Professional Education
About the Epilepsies
The AES and AAN should collaborate with relevant professional orga-
nizations that are involved in the education of the wide range of health
professionals who care for people with epilepsy to ensure that they are
sufficiently knowledgeable and skilled to provide high-quality, patient-
centered, interdisciplinary care. In their efforts to improve health pro-
fessional education, these organizations should do the following:
• efine essential epilepsy knowledge and skills for the range of
D
health professionals who care for people with epilepsy and their
families.
• onduct surveys of the relevant health professionals to identify
C
knowledge gaps and information needs.
• valuate the efficacy and reach of existing educational materials
E
and learning opportunities (e.g., websites, continuing education
courses).
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NEXT STEPS AND RECOMMENDATIONS
• evelop engaging and interactive educational tools, such as on-
D
line modules, that meet specific learning needs and could be eas-
ily integrated into existing curricula and education programs.
• nsure that educational materials and programs for health pro-
E
fessionals reflect current research, clinical guidelines, and best
practices. These educational materials and programs also should
convey positive messages that reduce stigma and reinforce the
need for (and skills associated with) clear health communication,
which takes into account the culture and health literacy of the
target audience.
• xplore and promote opportunities to expand the use of inno-
E
vative interdisciplinary educational approaches, such as high-
fidelity simulation.
• isseminate educational materials and tools widely to health
D
professional educators and other relevant professional associa-
tions and organizations.
IMPROVING COMMUNITY RESOURCES AND QUALITY OF LIFE
Epilepsy is much more than seizures. For people with epilepsy, the
disorder is often defined in more everyday terms, such as challenges in
school, uncertainties about social and employment situations, limitations
on driving a car, and questions about independent living. Family members
also may struggle with how to best help their loved one and maintain
their family life. Because of the range of seizure types and severities and
the high rate of comorbid health conditions, the ways in which quality
of life is affected by epilepsy vary widely. This report has examined the
range of community services—daycare and school, employment, trans-
portation, housing, sports and recreation, and others directed at family
support—relevant to improving quality of life for people with epilepsy.
The committee urges improvements to community services and programs
to ensure that they are
• patient-centered to meet the needs of the person with epilepsy;
• locally focused, taking into account the full range of resources in
the area;
• easily accessible;
• thoroughly evaluated;
• closely linked to health care providers, particularly epileptologists
and epilepsy centers; and
• innovative and collaborative in working with organizations and
agencies focused on other neurological and chronic conditions or
on similar service needs.
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RESEARCH PRIORITIES FOR IMPROVING QUALITY OF
Box 9-4 LIFE AND COMMUNITY RESOURCES
To improve quality of life and community resources for people with epilepsy,
the following areas should be considered priorities for future research:
• evelopment of interventions to identify academic problems and improve
D
academic achievement in students with epilepsy
• dentification of factors that increase the resiliency of the individual and
I
family and of behaviors that improve quality of life
• valuations of community programs that go beyond process measures and
E
assess outcomes for people with epilepsy and their families
• valuations of the effectiveness of vocational rehabilitation programs
E
• dentification of creative and innovative models of funding community
I
service providers and collaborations
• evelopment of performance indicators for vocational and other commu-
D
nity services and independent living programs
RECOMMENDATION 8 Improve the Delivery and Coordination of
Community Services
The CDC, state health departments, and the Epilepsy Foundation, in
collaboration with state and local Epilepsy Foundation affiliates and
other relevant epilepsy organizations, should partner with community
service providers and epilepsy centers to enhance and widely dissemi-
nate educational and community services for people with epilepsy that
encompass the range of health and human services needed for epilepsy,
its comorbid conditions, and optimal quality of life. These services
include support groups; vocational, educational, transportation, tran-
sitional care, and independent living assistance; and support resources,
including respite care for family members and caregivers. Specific at-
tention should be given to identifying needs and improving community
services for underserved populations. These efforts should
• upport and expand efforts by the Epilepsy Foundation’s state
s
and local affiliates and other organizations to link people with
epilepsy and their families to local and regional resources, em-
phasizing active collaboration among affiliates in the same region
or with similar interests;
• evelop innovative partnerships and incentives to collaborate
d
with organizations and public-private partnerships focused on
other neurological and chronic diseases or disorders;
• onduct and evaluate pilot studies of interventions to improve
c
the academic achievement of students with epilepsy;
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NEXT STEPS AND RECOMMENDATIONS
• aintain effective private, state, and national programs that as-
m
sist people with epilepsy regarding transportation, employment,
and housing;
• evelop and disseminate evidence-based best practices in employ-
d
ment programs for people with epilepsy;
• dentify and disseminate best practices for the coordination of
i
health care and community services, including programs using
patient and parent navigators;
• rovide a 24/7 nonmedical help line offering information on
p
epilepsy and links to community resources (this effort should
involve collaboration with similar efforts for related health con-
ditions); and
• evelop, disseminate, and evaluate educational and training op-
d
portunities (including interactive web-based tools) for commu-
nity service providers focused on epilepsy awareness and seizure
first aid training.
RAISING AWARENESS AND IMPROVING EDUCATION
Patient and Family Education
Education for people with epilepsy and their families plays an impor-
tant role in adapting to life with epilepsy, developing self-confidence, and
becoming competent in self-management, which entails being aware of
one’s own needs and being able to access resources to meet those needs.
Obtaining the requisite knowledge and skills related to epilepsy and its
management can also promote optimal well-being and quality of life for
people with epilepsy and their families, help prevent misconceptions about
the disorder, and reduce concerns about stigma.
People with epilepsy and their families should
• receive and have access to up-to-date, accurate information about
epilepsy, treatment options, and associated comorbidities and risks,
including SUDEP, as well as information about available vocational
and community resources and health care services upon diagnosis
and throughout their care;
• have access to information that meets their specific needs and
that is clearly written and communicated, appropriate for various
health literacy levels, and linguistically and culturally appropriate;
• build knowledge and self-management skills, including how to
solve problems, make decisions, use resources, develop partner-
ships with health care providers, and participate actively in patient-
centered care; and
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RESEARCH PRIORITIES FOR IMPROVING PATIENT AND
Box 9-5
FAMILY EDUCATION
To improve the education of people with epilepsy and their families, the fol-
lowing areas should be considered priorities for future research:
• ssessment of the information needs of specific subpopulations, including
A
women, men, older adults, children and adolescents, youths transitioning
to adulthood, racial/ethnic minorities, people with low socioeconomic sta-
tus, individuals with more severe forms of epilepsy or comorbidities and
their families, individuals with cognitive limitations, and individuals with
seizure-like events with a psychological basis
• ssessment of information needs associated with epilepsy-related risks
A
such as injuries, suicide, status epilepticus, and sudden unexpected death
in epilepsy
• dentification of best practices, effective strategies and preferred formats,
I
and innovative mechanisms for educating patients and families, especially
individuals in underserved populations
• evelopment of a knowledge base to support comprehensive educational
D
programs that feature content for epilepsy-specific self-management as
well as relevant aspects of the chronic care management models
• esting of methods for developing educational programs and resources
T
that appropriately reflect health literacy, cultural diversity, developmental
stage, cognitive ability, and gender
• xamination of the role that educational materials and programs, support
E
groups, and counseling resources may play in helping individuals and their
families successfully cope with stigma and related concerns, such as the
fear of having a seizure in public
• have access to appropriate educational resources and opportuni-
ties regardless of their socioeconomic status, demographic group,
culture, or geographic location.
RECOMMENDATION 9 Improve and Expand Educational Oppor-
tunities for People with Epilepsy and Their Families
To ensure that all people with epilepsy and their families have access to
accurate, clearly communicated educational materials and information,
the Epilepsy Foundation, the Epilepsy Therapy Project, the CDC, and
other organizations involved in Vision 20-20 should collaborate to do
the following:
• onduct a formal evaluation of currently available epilepsy web-
C
sites and their educational resources to ensure that they meet re-
quirements of clear health communication and are linguistically
and culturally appropriate for targeted audiences. This requires
thorough testing of content with target audiences, including un-
derserved groups, and revision as necessary.
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NEXT STEPS AND RECOMMENDATIONS
• evelop a central, easily navigated website (“clearing house”)
D
that provides direct links to websites containing current, accurate
epilepsy-related information for individuals and their families.
This centralized resource should be comprehensive; it should
include concise, easy-to-understand descriptions of the informa-
tion available on the linked websites and up-to-date contact
information for epilepsy organizations; and it should be widely
disseminated to health care providers and people with epilepsy
and their families.
• nsure that educational resources are up to date, are effective,
E
and reflect the latest scientific understanding of the epilepsies and
their associated comorbidities and consequences.
• ngage a wide and diverse spectrum of people with epilepsy and
E
their families in the development of online educational resources
to ensure that the content meets the specific needs of target audi-
ences at the outset.
• upport the development, evaluation, replication, and expanded
S
use of self-management and educational programs, including
those developed through the Managing Epilepsy Well Network.
• ngage state and local Epilepsy Foundation affiliates, epilepsy
E
centers, and health care systems and providers to expand the
dissemination of available educational resources and self-
management tools to people with epilepsy and their families.
• xplore the development of a formal, standardized certificate
E
program for epilepsy health educators.
Public Awareness and Knowledge
While surveys have suggested that attitudes regarding epilepsy have
become less negative over time, it is not certain how contemporary atti-
tudes compare and whether overall improvements in attitudes have affected
behavior. Compelling testimony from families dealing with epilepsy and re-
search on employment suggest that problems of stigma remain widespread.
Efforts to increase public awareness and knowledge are motivated by the
expectation that information that reduces misconceptions and misinforma-
tion will improve attitudes and, ultimately, behavior toward people with
epilepsy and thereby reduce stigma. Stigma, whether felt or overtly experi-
enced, has many negative consequences for both health and quality of life,
and overcoming it is an important goal for the field.
For the public in general, the news and entertainment media are pri-
mary sources of health information. Unfortunately, inaccurate depictions of
people with epilepsy and of severe seizures, used for dramatic effect, rein-
force negative perceptions. An ongoing effort is needed to create key part-
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440 EPILEPSY ACROSS THE SPECTRUM
RESEARCH PRIORITIES FOR IMPROVING PUBLIC
Box 9-6
AWARENESS AND KNOWLEDGE
To improve public awareness and knowledge, the following areas should be
considered priorities for future research:
• urveys (e.g., General Social Survey, HealthStyles Survey) that capture
S
trends in knowledge and awareness and attitudes and beliefs about epi-
lepsy over time and in specific subpopulations
• valuations of websites seeking to promote accurate knowledge about
E
epilepsy (e.g., Talk About It) to determine effective strategies for educating
the public through online resources
• valuation of public awareness campaigns that include documentation
E
and analysis of pre- and post-campaign data to assess changes in public
understanding of and beliefs about epilepsy and to establish best practices
in developing public awareness efforts
nerships within the entertainment media to encourage less sensationalistic
portrayals and more opportunities for the passive acquisition of accurate
knowledge about epilepsy, recognizing that the entertainment media have
limits as educational vehicles. Meanwhile, the news and information (versus
entertainment) media can be approached with story ideas about various as-
pects of epilepsy and its care—new treatments, compelling personal stories,
epilepsy in specific population groups (e.g., military veterans), and so on.
Using multiple forms of media, including social media and the Internet,
clear messages, and diverse activities targeted to specific audiences would
increase the chances of success for stigma reduction and public awareness
efforts. Any such efforts should take into account the health literacy and
cultural characteristics of target audiences, with different strategies devel-
oped for reaching each audience, one of which should be policy makers.
Some campaigns for chronic conditions have effectively used high-profile
spokespeople. Campaigns can be local or national; the infrastructure of
state and local epilepsy organizations could be a valuable resource for ex-
tending a national campaign’s reach to communities. Successful, multifac-
eted campaigns are expensive, need to be sustained over a period of years,
must include an effective formative evaluation strategy to enable revision of
messages and tactics as needed, and yet must be flexible enough to respond
to unanticipated opportunities.
RECOMMENDATION 10 Inform Media to Improve Awareness and
Eliminate Stigma
The CDC and other Vision 20-20 and relevant organizations should
support and bolster programs that provide information to journalists
and to writers and producers in the entertainment industry to improve
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NEXT STEPS AND RECOMMENDATIONS
public knowledge about epilepsy and combat stigma. Efforts to col-
laborate and engage with the media should include the following:
• romote more frequent, accurate, and positive story lines about
P
and depictions of characters with epilepsy.
• ontinue to encourage high-profile individuals with epilepsy (or
C
high-profile individuals who have family members with epilepsy)
to openly discuss their experiences and act as spokespeople.
• stablish partnerships with stakeholders that represent related
E
conditions associated with stigma (e.g., mental health). Efforts
could include the development of fellowships or integration
of epilepsy information into existing education programs for
journalists.
• ontinue to work with national and local news media on break-
C
ing news about epilepsy research and human interest stories.
• isseminate regular updates on research and medical advances
D
to journalists and policy makers through a variety of mecha-
nisms, including e-mail updates, listserv messages, social media,
and face-to-face meetings.
RECOMMENDATION 11 Coordinate Public Awareness Efforts
The Epilepsy Foundation and the CDC should lead a collaborative
effort with relevant stakeholder groups, including other members of
Vision 20-20, to continue to educate the public through awareness
efforts, promotional events, and educational materials and should col-
laborate to do the following:
• stablish an advisory council of people with epilepsy and their
E
families, media and marketing experts, private industry partners,
and health care experts to meet regularly and to inform future
efforts.
• evelop shared messaging that emphasizes the common and
D
complex nature of the epilepsies and the availability of successful
seizure therapies and treatments.
• xplore the feasibility and development of an ongoing, coordi-
E
nated, large-scale, multimedia, multiplatform, sustainable public
awareness campaign that would start by targeting key audience
segments to improve information and beliefs about the epilepsies
and reduce stigma.
• nsure that all awareness campaigns include
E
consideration of health literacy, cultural appropriateness, and
demographics of target audiences (e.g., age, gender);
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442 EPILEPSY ACROSS THE SPECTRUM
rigorous formative research and testing of materials through-
out the campaign; and
appropriate evaluation and follow-up tools and efforts.
STRENGTHENING STAKEHOLDER COLLABORATION
Epilepsy advocacy organizations are working to pull together diverse
stakeholders in order to create a stronger, united voice for change. The
Vision 20-20 group is an informal coalition of nonprofit organizations
and federal agencies. It provides an opportunity to move the field forward
through coordinated efforts among task force members and the develop-
ment of public-private partnerships. Vision 20-20 could be the driving force
for developing strategies and plans for the implementation of this report’s
research priorities and recommendations, including monitoring and evalu-
ating progress over the short and long term. This coalition has the breadth
and depth of expertise to take the public health agenda provided in this
report and move it forward into action steps to improve the lives of people
with epilepsy.
Vision 20-20 could create a framework and mechanism for continued
cross-organizational collaboration by establishing a set of working groups
in key areas. Such groups could monitor advances in the epilepsy field,
share and disseminate information, engage a diverse spectrum of people
with epilepsy and their families, and create a united voice for advancing re-
search, care, and education. For example, a working group on health policy,
health reform, and advocacy could monitor legislative and policy activities
at the local, state, and national levels; activate people with epilepsy and
their families to play a role in informing policy makers; and advocate for
legislation and policy changes that could improve health and quality of life
for people with epilepsy. A working group on surveillance and population
health and health services research could develop a comprehensive strat-
egy to encourage people with epilepsy to participate in a broad range of
research efforts from population-based surveillance to research focused on
self-management and education. Among other efforts, it also could request
and advocate for the regular inclusion of questions targeted to epilepsy,
its comorbidities, and epilepsy-related health care services in national and
state health surveys.
RECOMMENDATION 12 Continue and Expand Vision 20-20
Working Groups and Collaborative Partnerships
The member organizations of Vision 20-20 should continue their col-
laborative endeavors and further these efforts by expanding ongoing
working groups that aim to advance the field, support people with
epilepsy and their families, and educate the public. They should ex-
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NEXT STEPS AND RECOMMENDATIONS
plore partnerships with other organizations as well as with stakehold-
ers who represent related conditions (e.g., mental health, TBI, stroke,
autism spectrum disorders). The working groups should communicate
regularly, identify common goals, develop strategic plans, and, when
possible, carry out joint activities. The working groups should focus
on, but not limit their efforts to, the following areas:
• health policy, health reform, and advocacy;
• surveillance and epidemiologic and health services research;
• health care and community resources and services;
• education of health professionals;
• education of people with epilepsy and their families; and
• public education and awareness.
ENGAGING PEOPLE WITH EPILEPSY AND THEIR FAMILIES
Among the most persuasive epilepsy advocates and educators are peo-
ple with epilepsy and their family members who are willing to speak out in
order to provide a truer picture of the disorder and its impact. While many
people may be willing to play such a role, training and support will help
them do so more effectively. This may be the case regardless of whether they
are advocating for improvements in care in general terms, working with
support groups serving other families, or advocating for a higher level of
service for themselves, a special school accommodation for their child, or
a new medication regimen for their parent. People with epilepsy and their
families also advance knowledge about epilepsy and its treatment when
they participate in clinical research studies, surveys, and other investiga-
tions into ways to improve care and increase understanding of the meaning
of epilepsy in individuals’ lives.
RECOMMENDATION 13 Engage in Education, Dissemination, and
Advocacy for Improved Epilepsy Care and Services
People with epilepsy and their families should, to the extent possible,
work to educate themselves and others about the epilepsies, participate in
research, and be active advocates for improvements in care and services
for themselves, their family members, and other people with epilepsy.
Given their interests and to the extent possible, people with epilepsy and
their families should
• ecome informed about epilepsy and actively participate in and
b
advocate for quality health care and community services with
policy makers at the local, state, and national levels;
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444 EPILEPSY ACROSS THE SPECTRUM
• iscuss best options for care with health care providers, includ-
d
ing exploring referrals to epileptologists or epilepsy centers and
learning about available community resources and services as
needed;
• onsider participation in available research and surveillance
c
opportunities;
• ngage with teachers, school officials, daycare workers, coaches,
e
and other professionals to educate them about epilepsy and en-
sure that necessary services and accommodations are provided;
• alk openly, when possible, with family, friends, and colleagues
t
about epilepsy and the impact it has on daily living and quality
of life;
• ctively participate in support networks to share experiences
a
with other people with epilepsy and their families; and
• ork with nonprofit organizations to raise awareness and edu-
w
cate others about epilepsy and participate in advocacy efforts.
CONCLUSION
This review of the public health dimensions of the epilepsies highlights
numerous gaps in knowledge about and management of epilepsy and also
presents opportunities to move the field forward. Improvements in surveil-
lance methods and electronic health records hold promise for more precise
information about the epilepsies, which could enable better identification
of high-risk groups and better matching of treatments to individuals. There
are a number of opportunities for the public health community to improve
efforts to prevent epilepsy and its consequences. The growing emphasis on
quality of care, as well as access and cost containment, in the U.S. health
care system offers an opportunity to improve care for this large patient
group. Preparing health professionals to provide better epilepsy care, al-
though a challenge, will help improve quality and reduce costs. Consistent
delivery of accurate, clearly communicated health information can better
prepare people with epilepsy and their families to cope with the disorder
and its consequences. Efforts aimed at raising awareness about epilepsy
among the general public will reduce stigma and enable the full participa-
tion of people with epilepsy in society. Through collaboration and com-
mitment over time, the bold goals outlined throughout this report can be
accomplished.
