Epilepsy Across the Spectrum

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