Internet survey on knowledge and perceptions of epilepsy among the general public in Japan

OBJECTIVE: To improve the life quality of people with epilepsy, it is necessary to provide comprehensive epilepsy care and disseminate accurate information related to epilepsy to the public. In Japan, reports of traffic accidents involving people with epilepsy started to draw attention in the media in 2011. Ever since that, the association between the image of epilepsy from the general public, “Epilepsy,” and “Danger,” was more robust in 2013. Since 2017, no previous surveys have examined the perceptions and knowledge of epilepsy among the public in Japan. As an essential source of information for epilepsy care, we conducted a nationwide Internet-based survey to elucidate the current state of knowledge and perceptions of epilepsy among the public without epilepsy in Japan. METHODS: We conducted an online survey from July 29 to August 2, 2021, with 213 respondents (115 male, 97 female, and one unidentified; mean age: 50.52 ± 12.34 years) registered with an online survey service in Japan. In this survey, we first questioned whether or not a respondent had epilepsy, and then those with epilepsy were excluded from participation. We collected basic demographic information, administered the Epilepsy Knowledge Scale (18 items), and asked the open-ended response question, “What kind of disease do you think epilepsy is? If you do not know, please describe epilepsy in your words.” We adopted quantitative text analysis using KH Coder3 and co-occurrence network analysis to examine the connections between words. RESULTS: Among the respondents, 92% have heard of epilepsy, and 26.8% have observed an epileptic seizure before the survey. The knowledge scale yields an average score of 27.96 ± 21.3 (out of 100), with the question with the highest percentage of correct responses being “People with epilepsy are just as capable as other people” at 51.64%. The question with the lowest percentage of correct responses was “If the person with epilepsy only has seizures during sleep, the person can have a driver's license,” at 9.85%. The average number of Japanese characters responding to open-ended text questions was 10.45 ± 8.87 characters (including Kanji, Hiragana, and Katakana). We found that the word "froth" appeared more frequently with experience of observing a seizure, and the words “occur” and “brain” appeared more frequently with higher knowledge of epilepsy. Furthermore, comparing the sources of information from what they learned about epilepsy, the words “seizure,” “faint,” and “consciousness” appeared more frequently in school, with family and friends, and in newspapers and television, respectively. CONCLUSION: We identified the level of knowledge and perceptions of epilepsy among the general public in Japan in 2021. By analyzing the qualitative aspects of open-ended text responses, we gathered information that might be useful for informing the public of future efforts to provide accurate information related to epilepsy.