Have attitudes toward epilepsy improved in Germany over the last 50 years?

Objective: In Germany, six previous representative surveys on attitudes toward epilepsy (AE) have been conducted between 1967 and 2008 using the four original Caveness questions (CQs) from 1949 to 1980. The aims of this study were (1) to investigate changes in AE over the time span of 50 years, including the current survey in 2018 (2) to investigate the first-time emotional reactions measured with the Scales of Attitudes toward People with Epilepsy (SAPE) (3) to identify predictors of AE.Methods: A representative face-to-face survey with CQ, in addition with the SAPE scales of Social Distance, Stereotypes, Personal Concerns, and Emotional Reactions was carried out in Germany in 2018. One thousand and twenty-six persons who ever had heard of epilepsy participated. Respondents who answered don't know in the CQs were subsequently asked to answer only yes/no. The analysis of trends from 1967 to 2018 was based on the pooled data of the surveys. The four CQs in the 2018 survey were included in the SAPE item pool and an exploratory principal axis factor analysis was performed. General linear mod-els were performed to identify predictors.Results: For all four CQs, the trend of improved AE was significant over the past 50 years. In the 2018 sur-vey, excluding the don't know answer option increased the proportion of negative responses for contact of one's own children with a person with epilepsy (PWE) from 6.9% to 11.4% and for the marriage of one's own children with a PWE from 13.9% to 23.8%. When encountering a PWE, 30.1% would feel insecure or uncomfortable and nearly 60% were concerned that the PWE might be injured in case of a seizure. Knowing what to do in case of a seizure, knowing that seizures can be treated successfully, personal con-tact with a PWE along with younger age, and higher education were found to be the strongest predictors for positive AE identified by multivariate analyses. Exploratory principal axis factor analysis revealed that three of the four CQs items loaded > 0.30 at the factors of Social Distance and Stereotypes of SAPE but none on the factors measuring emotional reactions.Significance: AE measured by CQs have markedly improved in Germany over the last 50 years. Germany is to our knowledge the only country with such a long-term trend investigation in AE. Negative AE may be underestimated by survey questions with don't know answer option. Emotional aspects of attitudes are underexposed resp. neglected in the CQs, which are used worldwide for measuring AE. Additional tools like SAPE can close this gap. The identified predictors may help to derive interventions against negative AE.(c) 2022 Elsevier Inc. All rights reserved.

Automated summary

Objective: This study aimed to investigate changes in attitudes toward epilepsy (AE) over a 50-year period in Germany, including the 2018 survey. Emotional reactions towards people with epilepsy (PWE) were measured for the first time using the Scales of Attitudes toward People with Epilepsy (SAPE). Predictors of AE were also identified. Findings showed significant improvement in AE over the past 50 years. Excluding the "don't know" response option in the 2018 survey increased negative responses regarding contact and marriage with PWE. Many respondents felt insecure or uncomfortable when encountering PWE and expressed concerns about their safety during seizures. Knowledge about seizure management and treatment, personal contact with PWE, younger age, and higher education were strong predictors of positive AE.