Pilot trial of "Epi-school" group psychosocial education program for patients with epilepsy and their relatives in Japan.

Introduction: In epilepsy treatment, it is important for patients with epilepsy (PWE) to have accurate knowledge of epilepsy and to actively engage in treatment. In Japan, there are a few facilities for implementing learning programs for PWE, and their long-term usefulness has not been established. We conducted a pilot group psychosocial education program for PWE and their relatives in Japan.

Methods: Participants were PWE and their relatives who were 18 years old or older, were able to consent to participate in the study, and who were visiting the outpatient clinic of Saitama Medical Center from September 2019 to March 2020. As an intervention, we created a psychosocial educational program called "Epi-school" for PWE and their relatives, consisting of three sessions. Outcomes included patients' quality of life (QOL) measured with the epilepsy-31-P (QOLIE-31P), Rosenberg self-esteem scale (RSES), Stigma scale for chronic neurological disease (SSCI-8), and Epilepsy knowledge scale, before and after Epi-school. In addition, in a free-form questionnaire, we collected the impressions of patients and their relatives regarding the experience of participating in a group psychosocial education program.

Results: We examined 11 patients (two males, nine females) and 12 relatives (four males, eight females) who participated in Epi-school during the target period. The analyses revealed that only the scales measuring knowledge about epilepsy in the effect index showed significant increases in both patients and relatives after the program compared with before the program (patients: F [1,5.30] = 13.65, P < .05; relatives: F [1,4] = 17.50, P < .05). Moreover, a large effect size (d = 0.85) was obtained in patients, and a large effect size (d = 1.03) was obtained in relatives. In the open-ended questionnaire after participating in Epi-school, respondents reported changes in the psychological state of patients in the "learning epilepsy knowledge and coping methods", including changes in "acquired knowledge of illness" and "acquisition of coping with psychological aspects". Furthermore, it reports of "discovery/surprise", "thanks to medical staff", "interaction with other patients/relatives", and "new anxiety". In addition, "positive thoughts on treatment", "hopes for the future", "expectations for interaction with medical staff", "expectations for interaction with colleagues with the same disease", and "coming out of epilepsy" were reported. Regarding the psychological state of relatives after participating in Epi-school, it revealed "thanks to medical staff", "interactions with other patients/relatives", and "awareness of and remarks about other patients' statements". The results also revealed responses including "positive thoughts about treatment", "expectations of medical care", and "expectations of the community".

Discussion: The results confirmed that Epi-school led to improved knowledge, and psychological changes, including improved QOL and positive acceptance of epilepsy. Participants' awareness about epilepsy appeared to improve through encounters with other participants' attitudes toward epilepsy, possibly changing via the ways participants interacted. It is important to promote understanding of epilepsy, enhance the effects of treatment, and reduce psychosocial restrictions.

Conclusions: Epi-school may be useful as part of epilepsy treatment to improve the QOL of PWE by making it easier for patients and their relatives to develop acceptance of living with epilepsy. The main limitation in the current study was the small sample size and the lack of a control group. In future studies, we plan to further investigate the usefulness of psychosocial education programs in Japan, including Epi-school, by increasing the sample size, including a control comparison, and collecting more comprehensive data. We hope that the current findings will encourage the provision of appropriate medical insurance funding for patient learning programs in Japan.