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Centers for Disease Control and Prevention Epilepsy 4770 Buford Hwy, NE MS K-51 Atlanta, GA 30341-3717 Contact Us

Program Activities

Background

Recommendations from the Living Well with Epilepsy conferences in September 1997 and July 2003 form the basis for CDC epilepsy program activities in the areas of improving care, improving communication and combating stigma, promoting patient self-management, conducting epidemiologic and prevention research, increasing public awareness and knowledge, and strengthening partnerships.

On this page:

• Improving Care
• Improving Communication and Combating Stigma
• Self-management
• Epidemiologic and Prevention Research
• Increasing Public Awareness and Knowledge
• Strengthening Partnerships

Improving Care

CDC and the Agency for Health Care Research and Quality (AHRQ) collaborated on assessments of the evidence linking elements of care to clinical outcomes in special populations of patients with epilepsy. The resulting evidence-based reports also identified areas where evidence is lacking and research is needed. The two reports are available on-line: Management of Newly Diagnosed Patients with Epilepsy: A Systematic Review of the Literature and Management of Treatment-Resistant Epilepsy.

As part of its project, "Building Public Health Principles into Managed Care," George Washington University Center for Health Services Research and Policy has developed optional health service specifications for epilepsy. These specifications (available at http://www.gwumc.edu/sphhs/healthpolicy/chsrp/newsps/epilepsy/*) provide sample contract language for health service providers and insurers and can be used by grantees and stakeholders to promote public health.

CDC is funding extramural projects to develop methods for measuring levels of epilepsy care. One project used experts who in collaboration identified 30 potential indicators for evaluating the care provided to pediatric patients with epilepsy. [ Caplin DA, et al. Epilepsia 2006;47:2011–2019.] Another project used the input of experts to determine the best ways of treating adult patients diagnosed with epilepsy. Measures were developed to determine how effective these "best practices" are in improving the health of adults with epilepsy [Pugh MV, et al. Neurology 2007;69(21):2020–2027.]

In addition, CDC is working with Prevention Research Centers (PRCs) to develop and test home-based interventions for treating depression in people with epilepsy. The PRCs are using community-based mental health practitioners to conduct home visits modeled after the successful PEARLS Program (Ciechanowski, JAMA 2004); use of a secure, monitored Internet site, and professionally-led group conference calls.
 

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Improving Communication and Combating Stigma

CDC is working with partners to help adolescents with epilepsy make informed decisions about issues of greatest concern in their lives. A kit has been produced that includes a teen documentary video with facilitator guide, teen fact sheets, a notepad/journal with teen reminders, and a resource manual. The kit has been disseminated to Epilepsy Foundation affiliates, epilepsy camps, epilepsy associations, epilepsy counselors, health care providers, school personnel, and others who work with teens with epilepsy.

CDC explored with parents their experiences raising children with epilepsy and what educational products would help them assist their children in taking appropriate responsibility for managing their condition. After assessing parents' needs, CDC developed "You Are Not Alone," a toolkit for parents of teens with epilepsy. This kit includes a brochure that provides parenting tips, a resource guide, an audiocassette, customized stationery, and a video with facilitator's guide.

CDC is collaborating with the federal Substance Abuse and Mental Health Services Administration to examine the stigma associated with both epilepsy and mental illness. In addition, CDC will continue to examine the validity of the Attitudes and Beliefs about Living with Epilepsy (ABLE) scale, a tool to assess attitudes toward epilepsy in the United States.
 

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Self-management

CDC continues to promote epilepsy self-management intervention research and depression prevention interventions through support of the Prevention Research Center’s Managing Epilepsy Well Network. Research is underway to evaluate a computer-based, theory-driven epilepsy self-management program developed for adults with epilepsy.
 

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Epidemiologic and Prevention Research

CDC is supporting population-based epidemiologic studies to define the incidence and prevalence of epilepsy in diverse populations in the U.S., including potentially underserved communities; to define risk factors and severity of epilepsy in minority communities; to identify health disparities and factors contributing to health disparities among people with epilepsy; and to identify process and outcome measures that may be used to define optimum care in epilepsy.

To accomplish these objectives CDC worked with nineteen state health departments that included epilepsy questions in their BRFSS surveys to estimate self-reported epilepsy prevalence and study relationships between associated behavioral risk factors, chronic disease comorbidity, and health-related quality of life. All these states collected data on the prevalence of epilepsy in adults reporting a history of epilepsy, with 13 collecting more detailed information regarding current treatment for epilepsy, symptoms of epilepsy, access to care, and impairments in health-related quality of life. This surveillance summary is available. CDC supported research on the prevalence of self-reported epilepsy in California using the California Health Interview Survey [Kobau R, et al. Epilepsia 2007; 48:1904–1913]. An initiative is underway to examine associations between epilepsy and psychological distress in adults participating in the California Health Interview Survey. Research is being conducted by Boston University School of Public Health to assess the sensitivity, specificity, and positive and negative predictive values for epilepsy-related survey questions that have been developed to help determine epilepsy prevalence and severity in general populations. This validation will aid the future design and analysis of BRFSS epilepsy survey data.

CDC has funded population-based studies of epilepsy incidence and prevalence, health disparities, and burden of illness in communities in New York's Northern Manhattan area, South Carolina, and in Houston, Texas. Research projects are underway to assess the relationships between demographic variables, socioeconomic status, health care use, cost, and outcomes in different population groups in Texas, New York City, South Carolina, rural Kansas, the District of Columbia, and along the Arizona–Mexico border. Research is also underway to estimate epilepsy prevalence and treatment patterns in older adults using Medicare claims data.

CDC is supporting the development of economical screening methods and treatment of high-risk populations with cysticercosis (pork tape worm), which commonly manifests as epilepsy.
 

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Increasing Public Awareness and Knowledge

To assess perceptions and knowledge about people with epilepsy in the U.S. population, CDC conducted research to develop a survey to measure the U.S. public's knowledge and attitudes toward people with epilepsy and to assess the initial reliability and validity of the survey. CDC funded inclusion of epilepsy-related items on HealthStyles, a national survey sponsored by Porter Novelli. The results of these analyses provided evidence for reliability and construct validity of the instrument (DiIorio et al. 2004, Kobau et al. 2006 ).

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Strengthening Partnerships

CDC has established a cooperative agreement with the Epilepsy Foundation (EF) to conduct a multifaceted public education and awareness campaign. The 2008 campaign expanded its focus on the Hispanic community through the development of a new Spanish web site and a training curriculum for Community Health Workers, which became the centerpiece for the pilot of an Hispanic outreach program. In collaboration with Hispanic Radio Network, messages were aired on 210 Spanish language radio stations and disseminated through articles in Spanish-language newspapers. In addition, the Spanish radio program, “Prevenir es Salud”, provided epilepsy information through interviews with doctors, people with epilepsy, and other healthcare providers. The campaign has also broadened its African American outreach. A survey of the national affiliate network was conducted to assess programs and materials being used to conduct outreach in local African American communities. Affiliates received grants to pilot and assess outreach strategies. An educational ad was also run in Heart & Soul magazine.

CDC continues to collaborate with the EF in other program areas to expand education and awareness programs that target different groups, including racial and ethnic minorities, students and staff of middle schools and high schools, parents of teenagers with epilepsy, older adults, and police and emergency responders. An employment program designed to assist unemployed and underemployed people with epilepsy will be disseminated to Epilepsy Foundation affiliates for implementation in communities. In addition, strategies will be developed and implemented to address the needs of veterans who have endured traumatic brain injuries resulting in epilepsy.

The Association of State and Territorial Chronic Disease Program Directors (CDD) and CDC collaborated on a project to examine the role of states in addressing public health issues related to lower–prevalence chronic conditions, using epilepsy as a model for this exercise. A report, The Role of Public Health in Addressing Lower Prevalence Chronic Conditions: The Example of Epilepsy,*(PDF—1.03M) is now available.

CDC has partnered with the American Society on Aging (ASA) in cooperation with the Journalists Exchange on Aging to develop information on epilepsy that informs members of the news and information media about key issues and sources in reporting on this issue. This can be accessed from the ASA Web site at http://www.asaging.org/media/cdc.cfm.*
 

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* Links to non-Federal organizations are provided solely as a service to our users. Links do not constitute an endorsement of any organization by CDC or the Federal Government, and none should be inferred. The CDC is not responsible for the content of the individual organization Web pages found at this link.

One or more documents on this Web page is available in Portable Document Format (PDF). You will need Acrobat Reader to view and print these documents.

Date last modified: 10/29/2008
Date last reviewed: 10/29/2008
Content source: Division of Adult and Community Health, National Center for Chronic Disease Prevention and Health Promotion