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E-grāmata: Epilepsy Across the Spectrum: Promoting Health and Understanding

  • Formāts: 568 pages
  • Izdošanas datums: 29-Jun-2012
  • Izdevniecība: National Academies Press
  • Valoda: eng
  • ISBN-13: 9780309255073
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  • Formāts: 568 pages
  • Izdošanas datums: 29-Jun-2012
  • Izdevniecība: National Academies Press
  • Valoda: eng
  • ISBN-13: 9780309255073

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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
Acronyms xxv
Summary 1(18)
1 Introduction
19(30)
Scope of Work
21(3)
Epilepsy Is a Frequently Occurring and Costly Neurological Disorder
24(5)
Defining the Epilepsies
29(1)
Terminology, Stigma, Misperceptions, and Cultural Beliefs
30(3)
Overview of Epilepsy
33(9)
Cross-Cutting Themes
42(1)
References
43(6)
2 Surveillance, Measurement, And Data Collection
49(60)
Gaps in Information About Epilepsy
51(1)
Improving Measurement and Methodology
52(11)
Opportunities for-Enhancing Sources for Data Collection
63(30)
Conclusion
93(1)
References
94(15)
3 Epidemiology And Prevention
109(52)
Public Health and Prevention
110(1)
Incidence and Prevalence
111(7)
Risk Factors
118(4)
Comorbidities
122(11)
Outcomes
133(11)
Conclusion
144(1)
References
145(16)
4 Health Care: Quality, Access, And Value
161(70)
Overview of Epilepsy Care
163(9)
Improving Quality of Health Care
172(21)
Improving Access to Health Care
193(15)
Improving Value of Health Care
208(3)
Conclusion: Developing an Epilepsy Care Model
211(3)
References
214(17)
5 Health Professional Education
231(38)
Demonstrated Knowledge Gaps
233(7)
Attitudes and Beliefs of Health Professionals
240(2)
Innovative Teaching Strategies
242(3)
Models for Professional Education
245(5)
Continuing Education
250(5)
Role of Epilepsy Organizations and Centers
255(4)
Educating Health Professionals to Educate People with Epilepsy and Their Families
259(2)
Conclusion
261(2)
References
263(6)
6 Quality Of Life And Community Resources
269(58)
Overview of the Impacts of Epilepsy on Quality of Life
270(8)
Families
278(4)
Day Care and School
282(7)
Sports and Recreation
289(3)
Employment
292(8)
Driving and Transportation
300(6)
Housing
306(1)
Seizure First Aid Training
307(1)
Improving Community-Based Programs
307(6)
Conclusion
313(1)
References
314(13)
7 Educating People With Epilepsy And Their Families
327(56)
Goals and Priorities for Education
329(1)
Understanding Information Needs
329(12)
Where, When, and How People with Epilepsy and Their Families Receive Information
341(14)
Models of Epilepsy Education and Self-Management
355(10)
Lessons from Models for Other Health Conditions
365(2)
A Vision for Optimal Epilepsy Education
367(4)
Conclusion
371(2)
References
373(10)
8 Public Education And Awareness
383(42)
Public Knowledge, Attitudes, and Beliefs About Epilepsy
385(4)
How the Public Receives Information About Epilepsy
389(10)
Public Awareness Campaigns
399(13)
High-Profile Individuals Making a Difference
412(1)
Improving Campaigns to Eliminate Stigma
413(1)
Conclusion
414(2)
References
416(9)
9 Next Steps And Recommendations
425(20)
Increasing the Power of Data and Preventing Epilepsy
426(3)
Improving Health Care
429(6)
Improving Community Resources and Quality of Life
435(2)
Raising Awareness and Improving Education
437(5)
Strengthening Stakeholder Collaboration
442(1)
Engaging People with Epilepsy and Their Families
443(1)
Conclusion
444(1)
APPENDIXES
A Workshop Agendas
445(16)
B IOM Data-Gathering Effort
461(48)
C Data on Specialized Epilepsy Centers: Report to the Institute of Medicine's Committee on the Public Health Dimensions of the Epilepsies
509(8)
D Health Professionals Who Care for People with Epilepsy: Possible Roles and Relevant Boards and Organizations
517(12)
E Committee Biographies
529