PUB - Publikationen an der Universität Bielefeld

OBJECTIVE: Self-stigma is the internalization of unfavorable public perceptions, which people with epilepsy (PWE) frequently experience. PWE with strong self-stigma have low self-esteem and are less likely to engage in treatment behavior. The Epilepsy Self-Stigma Scale (ESSS) has been developed and validated in Japan. We translated the ESSS into German for this study to examine its reliability and validity.; METHODS: We created the German version of ESSS (ESSS-G) based on the original Japanese version. From May to October 2022, we recruited out- and inpatients from Bethel Epilepsy Centre, University Hospital for Epileptology, for psychometric evaluation. Inclusion criteria were an age of ≥18years, sufficient reading and speaking skills in German, and the ability to comprehend the German questionnaires. Participants also completed the Rosenberg Self-Esteem Scale (RSES), Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), Generalized Anxiety Disorder 7 (GAD-7), Epilepsy Knowledge Scale, and items on "overall quality of life (QOL)" and "overall health" (items from QOLIE-31).; RESULTS: 128 of 146 patients asked to participate granted informed consent and completed the study questionnaire (87.7% response rate). 115 cases were analyzed since 13 did not match the inclusion criteria. The analysis revealed a single factor explaining 49.2% of the total variance. All factor loadings were >0.40, and the reliability was high (Cronbach's alpha=0.80). Higher ESSS total scores were associated with higher anxiety (GAD-7, r=0.54, p<.001) and depression (NDDI-E, r=0.45, p<.001), lower self-esteem (RSES, r=-0.41, p<.001), overall QOL (r=-0.40, p<.001), and overall health (r=-0.35, p<.001), but not with knowledge about epilepsy (r=0.03, p=.770). In Germany, females, younger individuals, patients with earlier seizure onset, and those with generalized epilepsy had significantly higher self-stigma.; SIGNIFICANCE: The German version of the ESSS proved reliable and valid. It allows to evaluate the efficacy of treatment strategies in lowering self-stigma and conducting intercultural comparisons of epilepsy self-stigma. This article is protected by copyright. All rights reserved.