Abstracts

Rationale: Health literacy, defined as the capacity to seek and utilize health-related information, has been linked to quality of life (QOL) in epilepsy patients. Enhancing health literacy is thus crucial for effective epilepsy management. While previous research has mainly focused on information-related aspects of health literacy, recent studies have broadened its scope to encompass additional dimensions such as stigma and self-efficacy to help-seeking. However, there remains a gap in understanding these extended domains of health literacy and their impact on QOL. This study aims to investigate the status of extended health literacy domains and their association with QOL among patients with epilepsy.


Methods: A total of 165 epilepsy patients (88 women, aged 18-67 years) undergoing comprehensive assessment at our epilepsy monitoring unit were included in the study. Criteria for inclusion comprised age 18 years and above, a confirmed epilepsy diagnosis, a full IQ score of 70 or higher in Wechsler Adult Intelligence Scale-Third Edition, and consent to participate. Data were gathered from medical records and self-reporting questionnaires. A 19-item epilepsy health literacy scale was originally developed for this study, with 10 items adapted from the Epilepsy Stigma Scale to measure self-stigma, 5 items from the Knowledge and Attitude Scale to measure epilepsy knowledge, and 4 item from the Epilepsy Self-Efficacy Scale to measure self-efficacy to help-seeking. QOL were measured by the Patient-Weighted Quality of Life in Epilepsy inventory. Hierarchical cluster analysis was used, followed by subsequent analyses to assess the relationship between epilepsy health literacy, demographic variables, and QOL.


Results: Hierarchical cluster analysis revealed three distinct clusters of participants, with a significant difference observed solely in self-efficacy to help-seeking scores among groups (F = 434.71, p < .001). Further analysis comparing QOL scores across groups with varying levels of self-efficacy to help-seeking indicated that those with low self-efficacy to help-seeking reported significantly lower QOL compared to other groups (F = 6.44, p = .002). No significant differences were found in age, gender, full IQ score, age of onset, duration of epilepsy, or seizure frequency.


Conclusions: This is the first study to show the relationship between extended dimensions of epilepsy health literacy and QOL. The findings suggest that improving the QOL of people with epilepsy may require not only addressing epilepsy knowledge and self-stigma, but also improving skills to access health services and empowering patients to manage their lifestyle effectively.


Funding: This work was funded by Japan Society for the Promotion of Science Grant-in-Aid for Young Scientists (grant number 21K16616); JST SPRING (Grant Number JPMJSP2114).