Public awareness and experiences associated with epilepsy in Japan, 2013-2017.

BACKGROUND: Public attitudes and stigma toward epilepsy may limit people with epilepsy (PWE) in seeking treatment and participating in social activities. The prevalence of epilepsy is approximately 0.8% in Japan, similar to rates reported in other countries. Although epilepsy is relatively common, few studies have investigated public awareness about epilepsy in Japan. Recently, several serious car accidents in Japan involving PWE resulted in pedestrian fatalities. Traffic accidents involving PWE have been reported extensively and repeatedly in the media since 2011. In 2013 and 2017, our research group conducted a large investigation of awareness about epilepsy targeting the general public. Previous studies have reported that knowledge is one of the factors involved in improving attitudes and reducing stigma. The aim of the current study was to compare survey results, especially regarding knowledge of epilepsy, and capture changes in public awareness between 2013 and 2017. METHODS: A total of 2160 people (1080 in each year) participated, with a total of 540 women in each year, aged 20-79 years. Participants lived in the greater Tokyo area as well as the Tohoku and Kansai regions of Japan. All participants answered survey questions online in January 2013 and April 2017. We analyzed five questions regarding the participants' demographic data, nine questions regarding knowledge about epilepsy, and five questions regarding experiences with epilepsy. For questions investigating the respondents' knowledge about epilepsy, we counted only the correct answers and scored these for each respondent. RESULTS: Knowledge scores decreased from 2013 to 2017, demonstrated by statistical analysis. However, the effect size was very small. Knowledge scores among the following groups were higher in both 2013 and 2017: people who had read or heard about epilepsy, those who had witnessed people having an epileptic seizure, people who had acquaintances who were PWE, those who had PWE in their family, and people who had studied medicine or worked in a medical profession. CONCLUSION: We revealed that participants who had some experience with epilepsy had higher knowledge levels in both 2013 and 2017. This suggests that such experiences could be important for motivating people to seek appropriate and accurate knowledge about epilepsy, and could result in a reduction of stigma. Greater awareness is needed among the general public in Japan about various aspects of epilepsy.