Department of Health and Human Services
Centers for Disease Control and Prevention
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Program ActivitiesBackgroundRecommendations 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 CareCDC 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. 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. Improving Communication and Combating StigmaCDC 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. Self-managementCDC continues to support Prevention Research Centers to conduct research
to implement and evaluate self-management interventions for people with
epilepsy. In 2006, research was initiated to develop and test a
computer-based, theory-driven epilepsy self-management program for adults,
including veterans with epilepsy. Intervention material is tailored based on
Stages of Change Theory and motivational interviewing, and is administered
through a secure, professionally-monitored Internet site. Epidemiologic and Prevention ResearchCDC 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 these 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 is working with nineteen state health departments that have used their BRFSS surveys to collect data on self-reported epilepsy prevalence and associated behavioral risk factors, chronic disease comorbidity, and health-related quality of life. CDC is also supporting research on the prevalence of self-reported epilepsy in California using 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 a diverse population of people with epilepsy in Texas and New York City, and in South Carolina. In addition, research is underway to assess the prevalence of epilepsy and utilization of medical care along the Arizona-Mexico border in a community in which half the population is minority. In 2006 research was initiated to assess the prevalence of epilepsy in two rural counties of southeastern Kansas and to estimate the prevalence and cumulative incidence of epilepsy in people living in the District of Columbia. CDC is proceeding with epidemiological studies of cysticercosis in selected
communities in order to assess the associated risk of epilepsy and to
develop more effective prevention programs. CDC is also examining national
data for trends in rates of hospitalization of people with cysticercosis. Increasing Public Awareness and KnowledgeTo 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 continues to fund 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 ).
Strengthening PartnershipsCDC has established a cooperative agreement with the Epilepsy Foundation (EF) to conduct a multifaceted public education and awareness campaign. The 2006 campaign targeted the Hispanic community. Campaign activities included providing basic information about epilepsy to the Hispanic community through national conferences and local partnerships and providing Epilepsy Foundation affiliates with tools and resources to reach local Hispanic communities. Messages were aired on Spanish-language radio stations and distributed to Spanish-language newspapers, reaching as many as 25 million people. CDC continues to collaborate with the EF in other program areas to expand education and awareness programs that target racial and ethnic minorities, students and staff of middle schools and high schools, parents of teenagers with epilepsy, and police and emergency responders. New collaborative activities include initiatives to identify issues, priorities, and strategies necessary to address sudden unexplained death in epilepsy (SUDEP) and to develop strategies to support young people with epilepsy as they move into the workforce. 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.* * 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: 01/03/2008 |
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