Excerpt

Throughout this report, the committee emphasizes the ways in which epilepsy is a spectrum disorder. Epilepsy comprises more than 25 syndromes and many types of seizures that vary in severity. Additionally, people who have epilepsy span a spectrum that includes men and women of all ages and of all socioeconomic backgrounds and races/ethnicities, who live in all areas of the United States and across the globe. The impacts on physical health and quality of life encompass a spectrum as well, with individuals experiencing different health outcomes and having a range of activities of daily living that may be affected, including driving, academic achievement, social interactions, and employment. For some people, epilepsy is a childhood disorder that goes into remission (although the seizures may have lifelong consequences), while for others it is a lifelong burden or a condition that develops later in life or in response to an injury or other health condition. These many complexities of epilepsy make it a challenging health condition to convey to the general public to promote understanding and alleviate stigma. This report aims to provide evidence and impetus for actions that will improve the lives of people with epilepsy and their families.

Contents

• THE NATIONAL ACADEMIES
• COMMITTEE ON THE PUBLIC HEALTH DIMENSIONS OF THE EPILEPSIES
• Reviewers
• Preface
• Acknowledgments
• Acronyms
• Summary
  • SCOPE OF WORK
  • A VISION FOR THE FUTURE
  • INCREASING THE POWER OF EPILEPSY DATA
  • PREVENTING EPILEPSY
  • IMPROVING HEALTH CARE
  • IMPROVING COMMUNITY RESOURCES AND QUALITY OF LIFE
  • RAISING AWARENESS AND IMPROVING EDUCATION
  • STRENGTHENING STAKEHOLDER COLLABORATION
  • ENGAGING PEOPLE WITH EPILEPSY AND THEIR FAMILIES
  • PROMOTING HEALTH AND UNDERSTANDING
• 1. Introduction
  • SCOPE OF WORK
  • EPILEPSY IS A FREQUENTLY OCCURRING AND COSTLY NEUROLOGICAL DISORDER
  • DEFINING THE EPILEPSIES
  • TERMINOLOGY, STIGMA, MISPERCEPTIONS, AND CULTURAL BELIEFS
  • OVERVIEW OF EPILEPSY
  • CROSS-CUTTING THEMES
  • REFERENCES
• 2. Surveillance, Measurement, and Data Collection
  • GAPS IN INFORMATION ABOUT EPILEPSY
  • IMPROVING MEASUREMENT AND METHODOLOGY
  • OPPORTUNITIES FOR ENHANCING SOURCES FOR DATA COLLECTION
  • CONCLUSION
  • REFERENCES
• 3. Epidemiology and Prevention
  • PUBLIC HEALTH AND PREVENTION
  • INCIDENCE AND PREVALENCE
  • RISK FACTORS
  • COMORBIDITIES
  • OUTCOMES
  • CONCLUSION
  • REFERENCES
• 4. Health Care: Quality, Access, and Value
  • OVERVIEW OF EPILEPSY CARE
  • IMPROVING QUALITY OF HEALTH CARE
  • IMPROVING ACCESS TO HEALTH CARE
  • IMPROVING VALUE OF HEALTH CARE
  • CONCLUSION: DEVELOPING AN EPILEPSY CARE MODEL
  • REFERENCES
• 5. Health Professional Education
  • DEMONSTRATED KNOWLEDGE GAPS
  • ATITTUDES AND BELIEFS OF HEALTH PROFESSIONALS
  • INNOVATIVE TEACHING STRATEGIES
  • MODELS FOR PROFESSIONAL EDUCATION
  • CONTINUING EDUCATION
  • ROLE OF EPILEPSY ORGANIZATIONS AND CENTERS
  • EDUCATING HEALTH PROFESSIONALS TO EDUCATE PEOPLE WITH EPILEPSY AND THEIR FAMILIES
  • CONCLUSION
  • REFERENCES
• 6. Quality of Life and Community Resources
  • OVERVIEW OF THE IMPACTS OF EPILEPSY ON QUALITY OF LIFE
  • FAMILIES
  • DAY CARE AND SCHOOL
  • SPORTS AND RECREATION
  • EMPLOYMENT
  • DRIVING AND TRANSPORTATION
  • HOUSING
  • SEIZURE FIRST AID TRAINING
  • IMPROVING COMMUNITY-BASED PROGRAMS
  • CONCLUSION
  • REFERENCES
• 7. Educating People with Epilepsy and Their Families
  • GOALS AND PRIORITIES FOR EDUCATION
  • UNDERSTANDING INFORMATION NEEDS
  • WHERE, WHEN, AND HOW PEOPLE WITH EPILEPSY AND THEIR FAMILIES RECEIVE INFORMATION
  • MODELS OF EPILEPSY EDUCATION AND SELF-MANAGEMENT
  • LESSONS FROM MODELS FOR OTHER HEALTH CONDITIONS
  • A VISION FOR OPTIMAL EPILEPSY EDUCATION
  • CONCLUSION
  • REFERENCES
• 8. Public Education and Awareness
  • PUBLIC KNOWLEDGE, ATTITUDES, AND BELIEFS ABOUT EPILEPSY
  • HOW THE PUBLIC RECEIVES INFORMATION ABOUT EPILEPSY
  • PUBLIC AWARENESS CAMPAIGNS
  • HIGH-PROFILE INDIVIDUALS MAKING A DIFFERENCE
  • IMPROVING CAMPAIGNS TO ELIMINATE STIGMA
  • CONCLUSION
  • REFERENCES
• 9. Next Steps and Recommendations
  • INCREASING THE POWER OF DATA AND PREVENTING EPILEPSY
  • IMPROVING HEALTH CARE
  • IMPROVING COMMUNITY RESOURCES AND QUALITY OF LIFE
  • RAISING AWARENESS AND IMPROVING EDUCATION
  • STRENGTHENING STAKEHOLDER COLLABORATION
  • ENGAGING PEOPLE WITH EPILEPSY AND THEIR FAMILIES
  • CONCLUSION
• APPENDIXES
  • A Workshop Agendas
  • B IOM Data-Gathering Effort
  • C Data on Specialized Epilepsy Centers: Report to the Institute of Medicine's Committee on the Public Health Dimensions of the Epilepsies
  • D Health Professionals Who Care for People with Epilepsy: Possible Roles and Relevant Boards and Organizations
  • E Committee Biographies

This study was supported by Contract No. N01-OD-4-2139, T.O. #242, between the National Academy of Sciences and the National Institutes of Health (Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, and National Institute on Aging); Contract No. HHSP23337026T, T.O. #47, between the National Academy of Sciences and the Department of Health and Human Services (Administration on Developmental Disabilities, Center for Devices and Radiological Health and Center for Drug Evaluation and Research at the Food and Drug Administration, National Center for Chronic Disease Prevention and Health Promotion and National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, Office of the Assistant Secretary for Health, Office of the Assistant Secretary for Planning and Evaluation, and Office on Women's Health); and with support from Vision 20-20 sponsors (American Epilepsy Society, Citizens United for Research in Epilepsy, Dravet.org, Epilepsy Foundation, Epilepsy Therapy Project, Finding A Cure for Epilepsy and Seizures, Hemispherectomy Foundation, International League Against Epilepsy, National Association of Epilepsy Centers, Preventing Teen Tragedy, Rasmussen's Encephalitis Children's Project, and Tuberous Sclerosis Alliance).

Suggested citation:

IOM (Institute of Medicine). 2012. Epilepsy across the spectrum: Promoting health and understanding. Washington, DC: The National Academies Press.

Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project.

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.