Satisfaction with life domains in people with epilepsy.

While commonly used quality-of-life instruments assess perceived epilepsy-associated limitations in life domains and formally document patient concerns, less is known of community-dwelling adults with epilepsy about their satisfaction with broader life domains, such as satisfaction with housing, education, neighborhood, ability to help others, and achievement of goals. The purpose of this study was to examine satisfaction with life domains in a representative sample of community-dwelling adults with self-reported epilepsy from the 2008 HealthStyles survey. Following adjustment for sex, age group, race/ethnicity, education, and income, people with epilepsy were more likely to report frustration in the domains of achievement (e.g., dissatisfaction with education and life goals), compromised social interactions (dissatisfaction with family life, friends, and social life), and compromised physical capability (dissatisfaction with health and energy level). Life satisfaction and other well-being domains can supplement health indicators to guide treatment and program services for people with epilepsy to maximize their well-being.

The prevention research centers' managing epilepsy well network.

The Managing Epilepsy Well (MEW) Network was created in 2007 by the Centers for Disease Control and Prevention's (CDC) Prevention Research Centers and Epilepsy Program to promote epilepsy self-management research and to improve the quality of life for people with epilepsy. MEW Network membership comprises four collaborating centers (Emory University, University of Texas Health Science Center at Houston, University of Michigan, and University of Washington), representatives from CDC, affiliate members, and community stakeholders. This article describes the MEW Network's background, mission statement, research agenda, and structure. Exploratory and intervention studies conducted by individual collaborating centers are described, as are Network collaborative projects, including a multisite depression prevention intervention and the development of a standard measure of epilepsy self-management. Communication strategies and examples of research translation programs are discussed. The conclusion outlines the Network's role in the future development and dissemination of evidence-based epilepsy self-management programs.

Epilepsy surveillance among adults--19 States, Behavioral Risk Factor Surveillance System, 2005.

PROBLEM/CONDITION: Epilepsy is a brain disorder characterized by brief, recurrent disturbances in the normal electrical functions of the brain that result in seizures. Few population-based studies of epilepsy have been published for the United States, and the prevalence is expected to increase with the aging of the population. This is the first multistate study examining the prevalence of self-reported epilepsy and active epilepsy and includes an examination of socioedemographic and behavioral characteristics and of health-related quality of life among adults with epilepsy. REPORTING PERIOD COVERED: Data from the 2005 Behavioral Risk Factor Surveillance System (BRFSS) are presented for 19 states. DESCRIPTION OF SYSTEM: BRFSS is an ongoing, state-based, random-digit--dialed telephone survey of the noninstitutionalized U.S. population aged >/=18 years. BRFSS collects information on health risk behaviors and preventive health services related to leading causes of death and morbidity. In 2005, 19 states included questions on epilepsy or seizure disorder. RESULTS/INTERPRETATION: During 2005, 1.65% of noninstitutionalized adults from 19 states reported that they had ever been told by a doctor that they had epilepsy or seizure disorder (i.e., a history of epilepsy); 0.84% reported having active epilepsy (i.e., a history of epilepsy and currently taking medication or reporting one or more seizures during the past 3 months), and 0.75% were classified as having inactive epilepsy (i.e., a history of epilepsy or seizure disorder but currently not taking medicine to control epilepsy and no seizures in the 3 months preceding the survey). No substantial differences among states in the prevalence of lifetime epilepsy, active epilepsy, or inactive epilepsy were detected. Prevalence estimates for active and inactive epilepsy revealed no significant differences by sex or race/ethnicity. Adults with a history of epilepsy and with active epilepsy were more likely to report fair or poor health, be unemployed or unable to work, live in households with the lowest annual incomes, and have a history of co-occurring disorders (e.g., stroke or arthritis). Adults with a history of epilepsy and with active epilepsy also reported significantly worse health-related quality of life. Adults with a history of epilepsy were more likely to be obese, physically inactive, and current smokers. Among adults with active epilepsy with recent seizures, 16.1% reported not currently taking their epilepsy medication, and 65.1% reported having had more than one seizure in the past month. Among adults with a history of epilepsy, 23.7% reported cost as a barrier to seeking care from a doctor within the past year. A total of 34.9% of adults with active epilepsy with seizures reported not having seen a neurologist or an epilepsy specialist (i.e., a neurologist who specializes in treating epilepsy) in the previous year. PUBLIC HEALTH ACTION: Additional descriptive and analytic studies of epilepsy occurrence in diverse U.S. communities and populations are needed to better characterize epilepsy incidence rates, risk factors and etiologies, and types and severity, as well as epilepsy-associated conditions and disabilities. Community-based strategies that link health- care providers with social services such as public transportation, mental health services, and employment services might improve quality of life in persons with epilepsy. Implementing educational programs developed by CDC and the Epilepsy Foundation for schools, emergency responders, employers, providers, and the general public can increase awareness about epilepsy and reduce stigma associated with this disorder.

Prevalence of active epilepsy and health-related quality of life among adults with self-reported epilepsy in California: California Health Interview Survey, 2003.

PURPOSE: To examine the prevalence of self-reported epilepsy and active epilepsy, associated burden of impaired health-related quality of life, risk factors, and access to care in adults with self-reported epilepsy, and those classified as having active epilepsy with and without recent seizures. METHODS: We analyzed data from adults aged >or=18 years (n = 41,494) who participated in the 2003 California Health Interview Survey (CHIS). RESULTS: In California, 1.2% of adults reported ever being told they had epilepsy or seizure disorder, and 0.7% were classified as having active epilepsy. About three-fourths of adults with active epilepsy with recent seizures reported fair or poor health status. Adults with active epilepsy with recent seizures reported almost two weeks of poor physical or mental health and activity limitation days compared with two to 4 days per month in those without epilepsy. Among adults with active epilepsy and recent seizures, about one-quarter reported not taking any medicine to control their seizure disorder or epilepsy. About one-third reported physical disability/unable to work compared to a small proportion of the general population. The majority of adults with active epilepsy reported having a regular source of medical care. CONCLUSION: Our findings highlight the burden of epilepsy among adults in California. CHIS serves as a model demonstrating the value of including questions about epilepsy on public health surveillance systems to ascertain the burden of the disorder and to guide intervention research and public policy to improve HRQOL in people with epilepsy.

Further validation and reliability testing of the Attitudes and Beliefs about Living with Epilepsy (ABLE) components of the CDC Epilepsy Program Instrument on Stigma.

The aim of this study was to conduct additional validation and reliability testing of the Attitudes and Beliefs about Living with Epilepsy (ABLE) components of the CDC Epilepsy Program Instrument on Stigma. Thirteen items were tested using a representative sample of U.S. adults (n=4345). Confirmatory factor analyses confirmed two underlying constructs as hypothesized that accounted for 61% of the variance in the factor analysis: Negative Stereotypes (alpha=0.86) and Risk and Safety Concerns (alpha=0.88). As expected, participants differed on scale scores by demographic characteristics. Test-retest reliability was acceptable. The results of these analyses extend those from our previous study suggesting that the negative stereotypes and risk and safety concern scales demonstrate acceptable validity and reliability, and can be used to measure attitudes toward epilepsy related to these two domains.

The role of state public health agencies in addressing less prevalent chronic conditions.

INTRODUCTION: State-based chronic disease programs typically focus on the most prevalent chronic conditions, such as cancer, diabetes, and cardiovascular disease, but interest in less prevalent chronic conditions (LPCCs), such as epilepsy, is growing. In our study, we examined the perceived roles of state health departments in addressing LPCCs and used this information to develop recommendations for state health departments that are considering developing LPCCs programs. We also compared the identified state health department roles for LPCCs with roles related to healthy aging, as well as to the essential elements of existing state-based chronic disease programs, to determine whether future LPCCs programs would have any unique requirements. METHODS: Participants used concept-mapping techniques to generate a set of 100 statements on steps that state health departments could take to address LPCCs. The participants sorted and rated each statement according to importance and feasibility. We used a sequence of multivariate statistical analyses to generate a series of maps, or clusters, and rating graphics. We reviewed the findings and produced recommendations for state health departments. We used a similar process to examine roles of state health departments in addressing healthy aging. RESULTS: The participants grouped the LPCCs statements into nine clusters, which they rated as moderately feasible and important. The healthy aging statements were grouped into eight clusters. Clusters for LPCCs and healthy aging were similar. We also compared LPCCs clusters and the essential elements of existing state-based chronic disease programs and found that they were similar. CONCLUSION: The similarities between LPCCs clusters and essential elements of existing state-based chronic disease programs highlight an important point. State health departments that are considering establishing LPCCs programs should use strategies that have already been used by other public health agencies to develop chronic disease prevention and control programs.

Developing a measure to assess attitudes toward epilepsy in the US population.

The aim of this study was to develop an instrument to measure the US public's attitudes toward people with epilepsy and to assess the initial reliability and validity of the instrument. A 46-item attitudinal instrument was developed and tested using a proportional, stratified, national, random-digit dial household telephone survey of adults aged > or = 18 (n=758). Exploratory factor analyses revealed four underlying constructs that accounted for 34.4% of the variance in the factor analysis: negative stereotypes (alpha=0.73); risk and safety concerns (alpha=0.85); work and role expectations (alpha=0.76); and personal fear and social avoidance (alpha=0.79). Knowledge was also assessed; participants with less knowledge about epilepsy had more negative attitudes. The results of these analyses provided evidence for reliability and construct validity of the instrument. Additional tests of the reliability, validity, and factor structure of the scales are necessary to refine the instrument.

Prevalence of epilepsy and health status of adults with epilepsy in Georgia and Tennessee: Behavioral Risk Factor Surveillance System, 2002.

Behavioral risk factors associated with comorbidity in people with epilepsy are largely unknown. We studied a population-based sample of 8057 adults through the 2002 Behavioral Risk Factor Surveillance System, in Georgia and Tennessee, ascertaining a lifetime epilepsy prevalence of 2.1% in this population. This structured interview revealed that those with epilepsy had significantly worse self-reported fair or poor health status (39% vs 17% in adults without epilepsy), significantly greater cigarette smoking (38.8% vs 24.9% in other adults), and high rates of obesity (34.1% vs 23.7% in adults without epilepsy). Large percentages of adults with epilepsy reported currently symptomatic asthma and recent joint pain. Adults with epilepsy had lower educational attainment and lower household incomes, but a higher rate of medical insurance coverage, than did other adults. This type of population-based survey can serve to identify health disparities, behavioral risk factors for other chronic diseases, and unmet health care needs in individuals with epilepsy, and to track changes in these measures over time.