Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)

Abstract

Abstract 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 ≥18 years, 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 One hundred twenty‐eight 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 α = 0.80). Higher ESSS total scores were associated with higher anxiety (GAD‐7, r = 0.54, P < 0.001) and depression (NDDI‐E, r = 0.45, P < 0.001), lower self‐esteem (RSES, r = −0.41, P < 0.001), overall QOL (r = −0.40, P < 0.001), and overall health (r = −0.35, P < 0.001), but not with knowledge about epilepsy (r = 0.03, P = 0.770). 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.

Keywords

• construct validity
• factor analysis
• people with epilepsy
• reliability
• self‐stigma