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Institute of Medicine (US) Committee on the Public Health Dimensions of the Epilepsies; England MJ, Liverman CT, Schultz AM, et al., editors. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington (DC): National Academies Press (US); 2012.

Cover of Epilepsy Across the Spectrum

Epilepsy Across the Spectrum: Promoting Health and Understanding.

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Preface

Millions of lives in the United States are affected by epilepsy, yet this fourth most common neurological disorder is not as well understood as less prevalent conditions, such as Parkinson's disease and multiple sclerosis. Epilepsy is a complex medical disorder—not all seizures are the result of epilepsy, and epilepsy-related seizures can vary widely in severity and in the parts of the brain affected. Further, epilepsy is more than the seizures: many people with epilepsy have other coexisting health conditions that can significantly affect their health and well-being. Health care and community services relevant to epilepsy care are often fragmented and uncoordinated and are not always easily accessible. Children and older adults represent the fastest-growing populations with newly diagnosed epilepsy.

Quality of life for people with epilepsy can be impacted to varying degrees; it may result in limits on the person's ability to drive and on his or her employment and can have effects on social interactions and family dynamics. These challenges result in significant indirect costs for individuals, their families, and society that include lost productivity connected to unemployment, underemployment, and premature mortality. Throughout the centuries, misperceptions about epilepsy have developed and been perpetuated in popular culture, resulting in stigma and social isolation, which can affect health and further diminish quality of life. This history of discrimination and stigma has been difficult to reverse.

Despite these challenges, there are many ongoing efforts to improve the lives of people with epilepsy and their families; these efforts must continue and be strengthened so that, ultimately, all people with epilepsy have access to the full range of coordinated health and community services they need. Access to current medications and other medical treatments, medical devices, and surgery allow many people with epilepsy to be seizure-free or to have fewer seizures. New treatment options are needed for those whose epilepsy does not respond to available treatments or who have unacceptable treatment side effects. Educating people with epilepsy, their families, health professionals, and the general public about epilepsy requires different types of information and varying levels of detail, depending on the audience. Educational resources and tools designed to promote optimal self-management need to be evaluated and disseminated widely in order to facilitate the active participation of people with epilepsy and their families in patient-centered epilepsy treatment and management. Further, more needs to be known about the extent of epilepsy and its impact, as well opportunities for prevention and early identification, so that programs can be focused most effectively and, in these times of limited resources, be more sustainable. Data from enhanced surveillance and research can guide planning and policy efforts to improve the lives of people with epilepsy.

This report emphasizes five key messages:

  • Epilepsy is a common and a complex neurological disorder that affects health and quality of life. In the provision of coordinated health and human services, a whole-patient perspective is needed.
  • Effective treatments are available for many types of epilepsy, but timely referrals and access to those treatments fall short. Better data from surveillance and research could improve epilepsy care and prevention.
  • Many health professionals need to be better informed about epilepsy.
  • Education efforts for people with epilepsy and their families need to be thorough and sensitive to health literacy and cultural considerations.
  • The stigma associated with epilepsy has to be eliminated.

The committee's work was greatly enhanced by the testimony and presentations provided by people with epilepsy, their family members and friends, epilepsy researchers, and health professionals. Their compelling insights into the challenges that epilepsy imposes spurred the committee toward developing practical, action-oriented recommendations to improve the lives of people with epilepsy. The committee thanks everyone who provided testimony for sharing their personal experiences and perspectives, and it also thanks the experts who shared their research and knowledge during the public workshops.

It was my great privilege to chair this Institute of Medicine committee and to work with such dedicated committee members and staff who delved into the committee's statement of task with energy, intellectual commitment, creative talent, and carefully considered discussion. They devoted countless hours to this work. We hope that this report will be both a foundation and a stepping stone to further the diligent efforts by the epilepsy community, government agencies, nonprofit organizations, researchers, and individuals with epilepsy and their families. People with epilepsy will need all of our efforts to provide appropriate and compassionate care and services in order to live fully and with optimal quality of life.

Mary Jane England, Chair

Committee on the Public Health Dimensions of the Epilepsies

Copyright © 2012, National Academy of Sciences.
Bookshelf ID: NBK100588

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