Epilepsy Across the Spectrum: Promoting Health and Understanding
Epilepsy is the nation’s fourth most common neurological disorder,
after migraine, stroke, and Alzheimer’s disease; but public understanding
of epilepsy is limited. For example, many people do not know the causes
of epilepsy or what they should do if they see someone having a seizure.
Epilepsy is a complex spectrum of disorders—sometimes called the epilepsies—
that affects millions of people in a variety of ways and is characterized
by unpredictable seizures that differ in type, cause, and severity.
Yet living with epilepsy is about much more than just seizures. For
people with epilepsy, the disorder is often defined in practical terms, such
as challenges in school, uncertainties about social situations and employment,
limitations on driving, and questions about independent living.
An estimated 2.2 million Americans have epilepsy, with approximately
150,000 new cases diagnosed in the United States each year.
Approximately 1 in 26 people will develop epilepsy at some point in their
lives, and the onset of epilepsy is highest in children and older adults.
The Institute of Medicine (IOM) was asked by 24 sponsoring federal
agencies and nonprofit organizations to examine the public health
dimensions of the epilepsies, focusing on public health surveillance
and data collection; population and public health research; health policy,
health care, and human services; and education for people with
the disorder and their families, health care providers, and the public.
The IOM committee presents recommendations to improve the lives of people
with epilepsy in its report, Epilepsy Across the Spectrum: Promoting Health
Close the Data Gap and Prevent Epilepsy
Data are lacking that could improve the lives of
people with epilepsy, the committee concludes.
Current data sources provide a patchwork of surveillance
activity that, if coordinated and linked,
could shed light on the full physical, psychological,
social, and economic burdens of epilepsy and
improve knowledge about its risk factors, associated
health conditions, consequences, and health
and community service needs. The committee
calls for improved data collection on epilepsy to
inform health policy and to identify opportunities
for reducing the burden of the disorder.
Preventing epilepsy is possible for some
causes of the disorder. Prevention efforts to reduce
epilepsy’s known risk factors, such as traumatic
brain injury, stroke, and brain infections, will
likely result in fewer new cases of epilepsy. Other
opportunities exist to prevent the consequences
of epilepsy, including interventions to improve
seizure control in people who have both epilepsy
and depression, to reduce internalized feelings of
discrimination, and to eliminate epilepsy-related
causes of death, such as sudden unexpected death
in epilepsy (SUDEP). The committee highlights
the need for additional research, which will contribute
to new insights and approaches to the prevention
Improve Health Care and Community Services
Progress has been made in developing new seizure
medications and refining medical devices
and surgical techniques to reduce or eliminate
seizures for many individuals with epilepsy.
However, referrals to specialized care are often
delayed, and access to these treatments fall short,
particularly for rural and underserved populations
and for people with persistent seizures.
The committee outlines steps to expand access
to high-quality, patient-centered health care that
include focusing on timely identification and
treatment of epilepsy and its associated health
conditions, implementing measures that assess
quality of care, and establishing accreditation criteria
and processes for specialized epilepsy centers. The report stresses the importance of health
systems collaborating with a range of community
services to provide people who have epilepsy
with the full spectrum of services they may need.
The wide variety of health professionals
who care for those with epilepsy need improved
knowledge and skills to provide high-quality
health care. Building the health care workforce’s
knowledge base and skill sets in diagnosing,
treating, supporting, and generally working
with people with epilepsy is necessary to
ensure that individuals and their families have
access to high-quality, patient-centered care.
Living with epilepsy includes not only dealing
with seizures and their impact on health, but
also involves developing knowledge and skills to
manage the psychological and social challenges
and co-existing health conditions associated with
the disorder, side effects of medications, and fears
of discrimination and prejudice—all of which can
significantly affect quality of life. In addition, people
with epilepsy are at risk for premature death
and SUDEP. At the same time, they are faced with
health care and community services that are often
fragmented, uncoordinated, and difficult to obtain.
Family members may struggle with how to
best help their loved one and maintain family
life. The committee recommends that community
services and programs be bolstered to ensure
that they meet the needs of people with epilepsy
and their families, are easily accessible, and work
closely with health care providers. These services
should take a whole-patient perspective by providing
a range of resources and services, including
support groups, vocational training, transitional
care, assistance with independent living, and
respite for caregivers.