Toward an Integrated Public Health Approach for Epilepsy in the 21st Century

Howard K. Koh, MD, MPH; Rosemarie Kobau, MPH; Vicky H. Whittemore, PhD; Marie Y. Mann, MD, MPH; Jennifer G. Johnson, EdD; Joseph D. Hutter, MD; Wanda K. Jones, DrPH

Disclosures

Prev Chronic Dis. 2014;11

Abstract and Introduction

Abstract

Epilepsy, a complex spectrum of disorders, merits enhanced public health action. In 2012, the Institute of Medicine (IOM) released a seminal report on the public health dimensions of the epilepsies, recommending actions in 7 domains. The report urged a more integrated and coordinated national approach for care centering on the whole patient, including heightened attention to comorbidities and quality of life; more timely referral and access to treatments; and improved community resources, education, stakeholder collaboration, and public communication. The US Department of Health and Human Services responded to this report by accelerating and integrating ongoing initiatives and beginning new ones. This article summarizes recent federally supported activities promoting an integrated public health approach for epilepsy, highlighting progress in response to the landmark 2012 IOM report and identifying opportunities for continued public health action.

Introduction and Background

Despite being recognized for millennia, epilepsy is poorly understood by the public today. Epilepsy represents a complex spectrum of disorders that varies by type, cause, severity, and impact.^[1,2] Epilepsy can not only shorten life but also severely compromise overall well-being and full participation in life activities.^[1–3] Hence, epilepsy is not just a trying neurological disorder for individuals but also a broader public health challenge for society.^[1,4–7] This article summarizes federally supported activities promoting an integrated public health approach for epilepsy, highlighting recent progress in response to the landmark 2012 Institute of Medicine (IOM) report, Epilepsy Across the Spectrum: Promoting Health and Understanding.^[2]

Some national efforts previously spurred planning to address epilepsy in the United States. For example, in 1975, the Plan for Nationwide Action on Epilepsy, commissioned by Congress and led by the former Department of Health, Education, and Welfare, identified the burden of epilepsy in the population and released a first set of groundbreaking recommendations to federal and state agencies.^[5] Later, 2 national conferences, Living Well with Epilepsy I (1997) and Living Well with Epilepsy II (2003), convened an expanded group of stakeholders to assess progress and gaps for continued public health action^[7] Recommendations from these latter initiatives guided some federal agencies and epilepsy stakeholder activities in areas such as surveillance,^[2] but broader attention was needed.

To reinvigorate efforts to unify action in the 21st century, 24 organizations, including federal agencies in the US Department of Health and Human Services (HHS) and nonprofit organizations in Vision 20–20 (a group of epilepsy stakeholder organizations), joined together in 2010 to commission the first epilepsy report from the IOM. After receiving input through public meetings across the country and from health professional boards and associations, the IOM created a roadmap for the future. In March 2012, the IOM unveiled its seminal publication Epilepsy Across the Spectrum: Promoting Health and Understanding.^[2]

The report emphasized that epilepsy is a common spectrum of disorders that affects not only health but also quality of life for people of all ages; that a more coordinated approach is needed for care centering on the whole patient; that although effective treatments are available, timely referral and access to treatments fall short; and that it is an area filled with complexity and stigma. To address these and other challenges, the IOM recommended actions for a wide range of stakeholders in 7 domains (Table).^[2]

For HHS, the IOM report served as a catalyst for accelerating projects under way, launching new ones, and integrating departmental efforts.^[2,7] In 2 years since the report was released, HHS agencies have implemented numerous recommendations, often in collaboration with community partners and also by building on initiatives in the Affordable Care Act (ACA). This article documents these HHS efforts; of the 7 domains for which the IOM recommended actions, HHS has bolstered efforts in the first 5 domains, and in the remaining two has furthered partnerships with the voluntary, nongovernmental sector (through grants, contracts, or memoranda of understanding). The Table summarizes selected HHS activities, and we provide more information by domain below.

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Table. Selected Department of Health and Human Services (HHS) Activities Following the Release of the Institute of Medicine (IOM) Report *Epilepsy Across the Spectrum: Promoting Health and Understanding (2012)*
IOM Domain and Recommendations	Selected HHS Activities^a
Increasing the power of epilepsy data
1. Validate and implement standard definitions and criteria for epilepsy case ascertainment, health care and community services use and costs, and quality-of-life measurement. 2. Continue and expand collaborative surveillance and data collection efforts.	Adoption of Common Data Element Project Expansion of national, state, and local surveillance systems to examine epilepsy burden (eg, prevalence, access to care, comorbidity, early mortality) in the general population and high-risk groups Development and tracking of a national objective on epilepsy in HHS Healthy People 2020 to track access to care
Preventing epilepsy
3. Develop and evaluate prevention efforts for epilepsy and its consequences.	Identification of biomarkers of epileptogenesis Identification of genetic factors that increase risk for epilepsy Advancement of technologies to elucidate brain functioning for improved prevention and treatment opportunities Examination of bioequivalence of generic and brand-name seizure medications Development and testing of chronic disease self-management programs (secondary/tertiary prevention)
Improving health care
4. Improve the early identification of epilepsy and its comorbid health conditions. 5. Develop and implement a national quality measurement and improvement strategy for epilepsy care. 6. Establish accreditation of epilepsy centers and an epilepsy care network. 7. Improve health professional education about the epilepsies.	Elimination of pre-existing condition exclusions in health insurance policies and expanded coverage for care (eg, mental health care) via Affordable Care Act Identification of promising practices of patient/family-centered coordinated, comprehensive care for medically underserved children and teens with epilepsy Improvement of clinical services for adults with epilepsy and intellectual and developmental disabilities Expansion of telehealth/telemedicine services to reach people living in rural and geographically isolated areas Support of professional training opportunities for providers on epilepsy self-management
Improving community resources and quality of life
8. Improve the delivery and coordination of community services.	Implementation of evidence-based self-management programs for community-dwelling people with epilepsy In partnership with the Epilepsy Foundation (national and state affiliates), provision of community-based services, education, and support to people with epilepsy and their caregivers
Raising awareness and improving education
Patient and family education 9. Improve and expand educational opportunities for patients and families. Public awareness and knowledge 10. Inform media to improve awareness and eliminate stigma. 11. Coordinate public awareness efforts.	Provision of free educational resources on epilepsy self-management programs and resources to people with epilepsy and their caregivers Provision of professional training opportunities for school nurses, first responders, law enforcement, and other professionals to improve their understanding of epilepsy In partnership with the national Epilepsy Foundation, implementation of national and targeted public awareness campaigns about epilepsy
Strengthening stakeholder collaboration
12. Continue and expand Vision 20–20 working groups and collaborative partnerships.	Collaboration in epilepsy stakeholder meetings, and other communities of practice Expansion of partnerships with other clinical and public health stakeholders
Engaging people with epilepsy and their families
13. Engage in education, dissemination of, and advocacy for improved epilepsy care and services.	—