Recent changes in attitudes of US adults toward people with epilepsy — Results from the 2005 SummerStyles and 2013 FallStyles surveys☆

Abstract Objectives This study aimed to evaluate the validity and the reliability of two components of the Attitudes and Beliefs about Living with Epilepsy (ABLE) scale and to measure the magnitude of the public's attitudes and behaviors toward persons with epilepsy using U.S. nationally representative samples in 2005 and 2013. Methods We used data from the cross-sectional 2005 SummerStyles and 2013 FallStyles surveys to test the underlying structure of 16 items of the work and role expectations and personal fear and social avoidance subscales of ABLE by performing exploratory factor analysis (EFA). We estimated the percentages and 95% confidence intervals of adults who agreed or disagreed with each item. We also calculated the mean score of each subscale and used linear regression to obtain means adjusted for selected sociodemographic characteristics. Results Exploratory factor analysis confirmed a two-factor structure, but with the exception of omitting one item regarding work activities persons with epilepsy cannot do work activities safely, from one subscale. Both subscales also showed a high level of reliability (Cronbach's α = 0.8 and Cronbach's α = 0.9, respectively). Among the items in the work and role expectations subscale, a significantly higher percentage of adults in 2013 than in 2005 reported strongly or moderately agreeing that persons with epilepsy can do anything as well as anyone else (56.4%, 95% CI = 54.1–58.7 vs. 47.6%, 95% CI = 45.8–49.3) and can cope with everyday life (69.8%, 95% CI = 67.5–72.0 vs. 55.0%, 95% CI = 53.2–56.7). Among the items in the personal fear and social avoidance subscale, a significantly higher percentage of adults reported in 2013 than in 2005 strongly or moderately agreeing that they would be nervous around persons with epilepsy (25.4%, 95% CI = 23.4–27.5 vs. 16.8%, 95% CI = 15.4–18.2) and would avoid those with frequent seizures (12.4%, 95% CI = 11.0–13.9 vs. 7.6%, 95% CI = 6.7–8.7). The adjusted mean score for work and role expectations differed by sex, age, race/ethnicity, education, and income in both years. The adjusted mean score for personal fear and social avoidance differed by sex, age, race/ethnicity, education, and marital status. Negative attitudes were slightly but significantly higher in 2013 than in 2005. Conclusions Centers for Disease Control and Prevention's ABLE scale is a valid and reliable scale that can be used to study and to track the public's attitudes and behaviors toward persons with epilepsy. Compared with 2005, US adults' reported level of expectations for persons with epilepsy improved only in certain aspects by 2013. Adults' level of personal fear and intention for social avoidance worsened from 2005 to 2013. Because the levels of expectations and of fear and social avoidance differed by sociodemographic characteristics, continued efforts tailored to specific groups are needed. To supplement educational programs focused on improving knowledge, new communication approaches grounded in decision theory that quell risk perceptions and allay negative emotional responses are recommended.