Rosemarie Kobau

Standards for epidemiologic studies and surveillance of epilepsy

Worldwide, about 65 million people are estimated to have epilepsy. Epidemiologic studies are necessary to define the full public health burden of epilepsy; to set public health and health care priorities; to provide information needed for prevention, early detection, and treatment; to identify education and service needs; and to promote effective health care and support programs for people with epilepsy. However, different definitions and epidemiologic methods complicate the tasks of these studies and their interpretations and comparisons. The purpose of this document is to promote consistency in definitions and methods in an effort to enhance future population‐based epidemiologic studies, facilitate comparison between populations, and encourage the collection of data useful for the promotion of public health. We discuss: (1) conceptual and operational definitions of epilepsy, (2) data resources and recommended data elements, and (3) methods and analyses appropriate for epidemiologic studies or the surveillance of epilepsy. Variations in these are considered, taking into account differing resource availability and needs among countries and differing purposes among studies.

Psychological Distress, Comorbidities, and Health Behaviors among U.S. Adults with Seizures: Results from the 2002 National Health Interview Survey

Summary:  Purpose: To examine the association of seizures with health‐related quality of life (HRQOL), physical and psychiatric comorbidities, and health behaviors.

Prevalence of Self-Reported Epilepsy or Seizure Disorder and Its Associations with Self-Reported Depression and Anxiety: Results from the 2004 Healthstyles Survey

Summary:  Purpose: To examine the prevalence of self‐reported epilepsy or seizure disorder and its association with self‐reported recent depression and anxiety in a large sample of the U.S. adult population.

Prevalence of Active Epilepsy and Health-Related Quality of Life among Adults with Self-Reported Epilepsy in California: California Health Interview Survey, 2003

Summary:  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.

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.

Epilepsy self-management: a comparison of self-efficacy and outcome expectancy for medication adherence and lifestyle behaviors among people with epilepsy

The purpose of this study was to describe self-efficacy beliefs and outcome expectancies toward medication, seizure, and lifestyle management behaviors among 108 adults with epilepsy. Participants responded to an adapted version of the Epilepsy Self-Efficacy and Epilepsy Outcome Expectancy scales. Modifiable behavioral risk factors such as confidence for following medication dosing schedule, planning for medication refills, coping with adverse effects of medication, getting sufficient sleep, avoiding alcohol, and obtaining social support were identified. A larger proportion of persons reported higher self-efficacy for medication management behaviors than for healthful lifestyle behaviors. Findings from this study extend previous research on chronic disease that showed that individuals may be adherent with medication therapy, but not with healthful lifestyle behaviors necessary for the prevention and treatment of chronic disease. Individuals with low self-efficacy would benefit from interventions that increase efficacy beliefs to enhance their ability to adopt and maintain good self-management practices.

Knowledge of Epilepsy and Familiarity with This Disorder in the U.S. Population: Results from the 2002 HealthStyles Survey

Summary:  Purpose: To assess perceptions of knowledge and experience with epilepsy and seizures in the U.S. population to develop communication campaigns to improve the publics understanding of epilepsy. In a national survey, focal points included the publics knowledge of the disorder, whether people know someone who has it, exposure to epilepsy‐related information, and knowledge about how to respond to a person having a seizure.

Associations of self-reported anxiety symptoms with health-related quality of life and health behaviors.

Anxiety disorders affect approximately 19 million American adults annually and have been associated with impaired health-related quality of life (HRQOL), an increased rate of adverse health behaviors, and poor outcomes related to chronic illness in studies conducted in clinical populations. Our study was designed to examine the association of self-reported anxiety symptoms with HRQOL and health behaviors among a representative sample of US community-dwellers. Data were obtained from the Behavioral Risk Factor Surveillance System,an ongoing, state-based, random-digit telephone survey of the noninstitutionalized US population aged ≥ 18 years. In 2002, HRQOL measures were administered in 18 states and the District of Columbia. An estimated 15% of persons reported frequent (≥ 14 days in the past 30 days) anxiety symptoms. After adjusting for frequent depressive symptoms and sociodemographic characteristics, those with frequent anxiety symptoms were significantly more likely than those without to report fair or poor general health (vs. excellent, very good, or good general health), frequent physical distress, frequent activity limitations, frequent sleep insufficiency, infrequent vitality, frequent mental distress, and frequent pain. In addition, they were more likely to smoke, to be obese, to be physically inactive, and to drink heavily. Given their association with impaired HRQOL and adverse health behaviors, our results suggest that assessment of anxiety symptoms should be a facet of routine standard medical examinations.

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 publics 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.

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 Preventions (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 Networks 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 Networks role in the future development and dissemination of evidence-based epilepsy self-management programs.