Our Vision – a world where people with epilepsy receive optimal care in a supportive environment.
Our Mission – to effectively address public health issues related to epilepsy to improve the health of people living with epilepsy, especially those at greater risk for health disparities; improve their quality of life; and decrease the stigma associated with this condition.
Background on program activities
Recommendations from the Living Well with Epilepsy conferences in September 1997 [PDF - 443KB] and July 2003 [PDF - 2 MB] 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.
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 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 MJ, 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 P, et all. JAMA 2004;291(13):1569–1577]; use of a secure, monitored Internet site, and professionally led group conference calls.
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 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.
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. The MEW Network is developing and implementing a coordinated, applied research agenda; conducting research activities that promote self-management and quality of life; and identifying and collaborating with state, local public health and/or state or local mental health and other social services agencies to implement activities.
CDC supports public health surveillance and population-based epidemiologic studies in the United States:
- to define the incidence and prevalence of epilepsy in diverse population's and communities;
- to define risk factors and severity of epilepsy;
- to identify health disparities and factors contributing to health disparities among people with epilepsy, with attention to potentially underserved and minority communities;
- to describe consequences and outcomes in epilepsy, including factors that influence outcome such as the type of epilepsy, socioeconomic status, access to health care, and quality of health care;
- to improve and validate methods for conducting epidemiologic studies and surveillance of epilepsy;
- and to identify process and outcome measures that may be used to define optimum care in epilepsy.
To accomplish these objectives CDC has worked with many state health departments to promote surveys of epilepsy occurrence through the Behavioral Risk Factor Surveillance System and the California Health Interview Survey [Kobau R, et al. Epilepsia 2007; 48:1904–1913]. CDC has also funded population-based epidemiologic research conducted by many university researchers.
Finally, CDC supports the development of economical screening methods and treatment of high-risk populations with cysticercosis (pork tape worm), which commonly manifests as epilepsy.
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].
CDC works closely with the National Institutes of Health, National Institute of Neurological Disorders and Stroke (NINDS), to ensure that CDC-supported research complements NINDS-supported basic and clinical research on epilepsy.
CDC has established a cooperative agreement with the Epilepsy Foundation (EF) to develop and implement programs to enhance epilepsy public awareness and promote partnerships, education, and communication at local and national levels.
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 , is now available.
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