Although epilepsy is one of the nation's most common neurological
disorders, public understanding of it is limited. 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 that affects an estimated 2.2 million Americans 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; 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. The Institute
of Medicine was asked 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.
In Epilepsy Across the Spectrum, the IOM makes recommendations
ranging from the expansion of collaborative epilepsy surveillance
efforts, to the coordination of public awareness efforts, to the
engagement of people with epilepsy and their families in education,
dissemination, and advocacy for improved care and services. Taking
action across multiple dimensions will improve the lives of people
with epilepsy and their families. The realistic, feasible, and
action-oriented recommendations in this report can help enable
short- and long-term improvements for people with epilepsy. For all
epilepsy organizations and advocates, local, state, and federal
agencies, researchers, health care professionals, people with
epilepsy, as well as the public, Epilepsy Across the Spectrum is an
essential resource. Table of Contents Front Matter Summary 1
Introduction 2 Surveillance, Measurement, and Data Collection 3
Epidemiology and Prevention 4 Health Care: Quality, Access, and
Value 5 Health Professional Education 6 Quality of Life and
Community Resources 7 Educating People with Epilepsy and Their
Families 8 Public Education and Awareness 9 Next Steps and
Recommendations Appendix A: Workshop Agendas Appendix B: IOM
Data-Gathering Effort Appendix C: Data on Specialized Epilepsy
Centers: Report to the Institute of Medicine's Committee on the
Public Health Dimensions of the Epilepsies Appendix D: Health
Professionals Who Care for People with Epilepsy: Possible Roles and
Relevant Boards and Organizations Appendix E: Committee Biographies
General
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