Abstracts

Rationale: Public attitudes and stigma surrounding epilepsy may limit patients’ motivation for adhering to treatment and for social activity. Several serious vehicular accidents caused by people with epilepsy (PWE), and which resulted in pedestrian fatalities, have recently occurred in Japan. In 2011–2012, Japanese media extensively and repeatedly reported on such accidents involving PWE. In 2013, we conducted an attitude survey targeting the general public in Japan following the increase of media coverage. We found that people who had considerable knowledge on and specific experiences with epilepsy evaluated the social ability of PWE significantly higher. In the present study, we conducted the same survey in 2017 and we compared the results with those from 2013. Methods: A total of 2160 people (1080 women, age range: 20–79 years, 1080 in each year) living in the greater Tokyo area or the Tohoku or Kansai regions of Japan answered questions online in January 2013 and April 2017. The questionnaires consisted of seven questions on demographic data, three on experiences with epilepsy, nine on knowledge of epilepsy, and 38 on a five-point Likert scale regarding attitudes and stigma surrounding epilepsy. Exploratory factor analysis was conducted to analyze the answers to those 38 questions. We extracted four concerning attitudes and stigma as factors related to “social ability”. We averaged the answers of those four and scored so a higher score reflected negative attitudes. We also summed a knowledge score. We focused on the relationship between social ability evaluation of PWE and knowledge of epilepsy. We used analysis of variance with Bonferroni’s correction as a post-hoc test, and Spearman’s rank correlation coefficient at a significance level of 0.05. Results: Participants in 2017 expressed significantly stronger negative attitudes about social ability of PWE than did those in 2013. Evaluation of social ability of PWE in the following groups was far more positive in both 2013 and 2017: people who had seen or heard the word “epilepsy”, who had witnessed epileptic seizures, who had acquaintances who were PWE, who had PWE in their family, and who had studied medicine or worked in a medical profession. Participants in 2017 had less knowledge of epilepsy compared with those in 2013. Significantly fewer people surveyed in 2017 had seen or heard the word “epilepsy”. In both surveys, we found a positive correlation between greater knowledge and positive attitude toward social ability in PWE. Conclusions: We found that the public’s evaluation of social ability of PWE was more negative in 2017 than in 2013, which may owe to the fewer chances to be exposed to the word “epilepsy”. Experiences with and knowledge of epilepsy might significantly affect evaluation of social ability of PWE. However, the surveyed public displayed insufficient knowledge. Further awareness of PWE is needed in Japan. Funding: No funding was received