Patricia H. Price

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 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.

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.

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.

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.

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.

Improving understanding, promoting social inclusion, and fostering empowerment related to epilepsy: Epilepsy Foundation public awareness campaigns — 2001 through 2013

It is a significant public health concern that epilepsy, the fourth most common neurological disorder in the United States, is generally poorly understood by both the public and those living with the condition. Lack of understanding may magnify the challenges faced by those with epilepsy, including limiting treatment opportunities, effective management of symptoms, and full participation in daily life activities. Insufficient awareness of epilepsy and appropriate seizure first aid among the public and professionals can result in insufficient treatment, inappropriate seizure response, physical restraint, social exclusion, or other negative consequences. To address the need for increased public education and awareness about epilepsy, the national Epilepsy Foundation, supported by the Centers for Disease Control and Prevention, has conducted yearly multifaceted public education and awareness campaigns designed to reach the broad population and targeted segments of the population including youth, young adults, racial/ethnic groups (i.e., African-, Hispanic-, and Asian-Americans), and people with epilepsy and their caregivers. Campaign channels have included traditional media, social media, and community opinion leaders and celebrity spokespersons. The key activities of these campaigns, conducted from 2001 to 2013, are summarized in this report.

News from the CDC: translating epilepsy self-management research to practice

Epilepsy, which affects about two million persons in the USA, is characterized by recurrent, unprovoked seizures [1]. Many with the condition face significant challenges related to managing treatment, symptoms, disability, lifestyle limitations, depression, and stigma. The Centers for Disease Control and Prevention’s (CDC) Epilepsy Program supports activities related to epidemiologic and prevention research, improving care, combating stigma, promoting patient self-management, increasing public awareness and knowledge, and strengthening partnerships. In 2002, promising research on epilepsy self-management began to emerge from CDC’s Prevention Research Centers, which led to the development of the Managing Epilepsy Well (MEW) Network (http://www.sph.emory.edu/ManagingEpilepsyWell/) [2]. Since 2007, the MEW Network has successfully developed and evaluated several theory-based interventions through telehealth and traditional formats [3]. MEW programs currently available to the public include Epilepsy Awareness Support and Education (WebEase), an on-line self-management program, Using Practice and Learning to Increase Favorable Thoughts (UPLIFT), a telehealth depression treatment program, and Program to Encourage Active Rewarding Lives (PEARLS), a collaborative care home-based depression treatment intervention [3].