Abstracts

Rationale: In order to enhance the QOL of people with epilepsy (PWE), it is necessary not to provide comprehensive epilepsy treatment but also to reduce prejudice against the disease and to disseminate accurate information on epilepsy to society. We conducted a national questionnaire survey to grasp the current state of knowledge and image of epilepsy in Japan for PWE and the ordinary public without epilepsy.

Methods: In August 2021, we conducted an internet questionnaire survey for 310 PWE (average age: 47.8 ± 11.9, sample size: male 190/female 120) and 213 ordinary people without epilepsy (average age: 50.52 ± 12.34, sample size: male 115/ female 97/others 1) who registered on the database of Japanese Rserch Company (Intage Inc.). We inquired PWE to answer the questionnaire, which involves treatment satisfaction, restrictions of daily life, the condition of support, the epilepsy self-stigma scale (ESSS), the Rosenberg self-esteem scale (RSES), and the epilepsy knowledge scale. In addition, we enabled non-patients to offer a free-form answer to "How do you perceive epilepsy as an illness? If you are unfamiliar with epilepsy, please answer with your impression."

Results: The results of the knowledge scale of PWE averaged 40.19 ±18.75, the ESSS averaged 17.69 ±6.25, and the RSSS averaged 26.02± 6.13. We calculated Spearman's rank correlation coefficient at a significance level of 5% for the relationship between ESSS and the knowledge scale in results of no significant correlation (P=0.562, ρ=-0.036). There was also a significant moderate negative correlation between ESSS and RSES (P=0.005, ρ=0.177). There was a significant weak positive correlation between RSES and the knowledge scale (P=0.005, ρ=0.177). _x000D_
Regarding restrictions in life, 33.5% of respondents answered, "I am having trouble with epilepsy at daily lives," and 21.3% answered, "I may be restricted due to epilepsy." On the other hand, only 5.8% answered, "I have participated in epilepsy self-help associations/education courses," and we observed that psychosocial support is deficient.
_x000D_ Among the ordinary public, 92% of respondents "have heard of epilepsy," and 26.76% answered "have seen epileptic seizures." The average knowledge scale result was 27.96±21.3. The average number of characters answered in the free description was 10.69±8.9 words, and the frequently used words were "seizure," "consciousness," "sudden," "convulsions/convulsions," and "loss." In the co-occurrence network, we successfully identified the robust connections between "brain-disease," "consciousness-loss," and "fall down-bubbles-wiping."

Conclusions: We found no correlation between the strength of self-stigma and knowledge, and a positive correlation between self-esteem and knowledge in PWE. Furthermore, we were able to specifically capture the image as well as the knowledge of epilepsy among the ordinary public. These results provide a basis for the provision of information on epilepsy to the public in the future.

Funding: This research was implemented under the approval of the Research Ethics Committee of Saitama Medical University, Saitama Medical Center (2021-106) and supported by JSPS KAKENHI Grant Number JP21K13709.