"Epilepsy Across the Spectrum: Promoting Health and Understanding" ed. by Mary Jane England

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.

The issue 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.

Contents
ACRONYMS
SUMMARY
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
Attitudes 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