Elsevier

Epilepsy & Behavior

Volume 25, Issue 4, December 2012, Pages 634-661
Epilepsy & Behavior

Special Communication
Testimonies submitted for the Institute of Medicine report: Epilepsy across the spectrum: Promoting health and understanding

https://doi.org/10.1016/j.yebeh.2012.10.003Get rights and content

Abstract

The 2012 Institute of Medicine (IOM) report, Epilepsy Across the Spectrum: Promoting Health and Understanding, provides a vision for moving the field forward to improve the lives of people with epilepsy. The committee made 13 recommendations and identified a number of research priorities to promote accomplishing this vision. Its work was enriched by the contributions of many individuals who testified before the committee during its two public workshops and who submitted written testimony throughout the study process. Many of these testimonies included in this article were presented in-person at the committee's public workshops in Los Angeles, CA on March 21, 2011 and in Washington, DC on June 28–29, 2011. Among those providing testimony were people with epilepsy, their family members, health care professionals, and researchers specializing in epilepsy. The 36 testimonies that comprise this publication provided the committee with a more complete and current picture of epilepsy-related health care issues and the challenges that epilepsy imposes on the lives of people with epilepsy and their families.

Highlights

► The Institute of Medicine report examines the public health dimensions of epilepsy. ► It provides a vision for improving the lives of people with epilepsy. ► The report was enriched by the contributions of individuals who provided testimony. ► Testimonies provide a picture of issues and the challenges for people and families.

Introduction

The 2012 Institute of Medicine (IOM) report,1 Epilepsy Across the Spectrum: Promoting Health and Understanding [1], provides a vision for moving the field forward to improve the lives of people with epilepsy. The committee made 13 recommendations and identified a number of research priorities to promote accomplishing this vision [2]. Its work was enriched by the contributions of many individuals who testified before the committee during its two public workshops and who submitted written testimony throughout the study process. Many of these testimonies included in this article were presented in-person at the committee's public workshops in Los Angeles, CA on March 21, 2011 and in Washington, DC on June 28–29, 2011. Among those providing testimony were people with epilepsy, their family members, health care professionals, and researchers specializing in epilepsy.

The 36 testimonies that follow provided the committee with a more complete picture of epilepsy-related health care issues and the challenges that epilepsy imposes on the lives of people with epilepsy and their families. Although many testimonies focused on more than one topic, for ease of presentation we have grouped them into four broad areas and present them in the following order: personal perceptions of epilepsy, impact of epilepsy on the family, sudden unexpected death in epilepsy (SUDEP), and health care and community services. Each area is preceded by a brief introduction that identifies some of the themes and challenges described in the testimonies. Our hope is that these narratives provide a timely depiction of the current state of epilepsy in our society.

Section snippets

Introduction to personal perceptions of epilepsy

Seven adults testified about their personal experiences of living with epilepsy. Some provided insights into having epilepsy during childhood, and others described the onset of epilepsy in adulthood. Some described a life with seizures that were not controlled, while others described the challenges they had even though their seizures were well controlled. All provided glimpses into the difficulties that were unique to having epilepsy during adulthood. Although a few reported having a good

Introduction to impact of epilepsy on the family

The testimonies from the following eight family members provide compelling insights into how the nature of epilepsy can disrupt family life. Most testimonies provided a parent's view of life with epilepsy, with some mentioning challenges with friendships and indicating that their children had no friends. Others described the challenges associated with having a sibling, a parent, or a husband living with epilepsy. Although a few describe experiences with health care that were successful and

Introduction to perceptions on sudden unexpected death in epilepsy

Among people with epilepsy, the risk of dying suddenly and unexpectedly is 20 times greater than in the general population [3]. SUDEP is a cause of death that occurs suddenly and unexpectedly in an otherwise healthy person with epilepsy where autopsy provides no other explanation [4]. Common to the four testimonies shared in this section is the fact that the treating physician never mentioned SUDEP as a possible outcome before the death occurred. Since the deaths of their loved ones, these

Introduction to health care and community services

Parents of children with epilepsy, adults with epilepsy, representatives of voluntary epilepsy organizations and health professionals caring for people with epilepsy spoke about health care and community services for epilepsy from their different perspectives. Gaps in care were discussed at the state level for a rural state, by parents who described the search for optimal epilepsy care, and by others who highlighted the need to educate neurologists to refer patients to epileptologists.

Conclusion

As a whole, these testimonies provide a greater understanding of the day-to-day challenges experienced by people with epilepsy, by their families, and by health care providers who are seeking to improve epilepsy care. Testimonies from family members about death of their loved ones due to SUDEP emphasize the importance of routinely providing education on SUDEP, especially in light of it being the leading cause of epilepsy-related death [12]. The most commonly discussed topic in the testimonies

Committee on the Public Health Dimensions of the Epilepsies

MARY JANE ENGLAND, M.D. (Chair), Boston University, Massachusetts

JOAN KESSNER AUSTIN, Ph.D., R.N., FAAN, Indiana University School of Nursing, Indianapolis

VICKI BECK, M.S., Beck Communications, Carlsbad, California

CHARLES E. BEGLEY, Ph.D., University of Texas Health Science Center, Houston

MALACHY L. BISHOP, Ph.D., CRC, University of Kentucky, Lexington

LIONEL CARMANT, M.D., Université de Montréal, Canada

CAROLYN COCOTAS, R.T., M.P.A., CHC, CHPC, F.E.G.S. Health and Human Services System, New York

Acknowledgments

We wish to acknowledge the Testimony Group. They have raised awareness of the issues confronting people with epilepsy and their families and made these issues alive to all who read their stories. We thank them for their willingness to share their stories with a broader audience. The Testimony Group members are the following: Elizabeth Musick, Jim Ashlock, Michael Bornemann, Sabrina D. Cooke, Mark Brooks, Mary Macleish, John Gambo, Lisa Soeby, Joan Ashlock, Jeffrey Catania, Janna Moore, Tom

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