Department of Epileptology (Krankenhaus Mara), Bielefeld University, Medical School, Bielefeld, Germany.
Department of Psychiatry, Saitama Medical Center, Saitama Medical University, Saitama, Japan.
Epilepsia Open. 2023 Sep;8(3):946-958. doi: 10.1002/epi4.12765. Epub 2023 Jun 19.
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.
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).
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.
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.
自我污名是对不利公众看法的内化，癫痫患者（PWE）经常会经历这种情况。自我污名严重的 PWE 自尊心较低，不太可能进行治疗行为。《癫痫自我污名量表》（ESSS）已在日本开发和验证。我们将 ESSS 翻译为德语，用于本研究以检验其信度和效度。
我们根据原始的日文版创建了德文版的 ESSS（ESSS-G）。2022 年 5 月至 10 月，我们从贝特尔癫痫中心、大学癫痫学医院招募了门诊和住院患者进行心理测量评估。纳入标准为年龄≥18 岁、具有足够的德语阅读和口语能力，以及理解德语问卷的能力。参与者还完成了罗森伯格自尊量表（RSES）、癫痫患者神经障碍抑郁量表（NDDI-E）、广泛性焦虑症 7 项（GAD-7）、癫痫知识量表以及关于“整体生活质量（QOL）”和“整体健康”的项目（来自 QOLIE-31）。
在被要求参加的 146 名患者中，有 128 名同意并完成了研究问卷（87.7%的回复率）。由于 13 名患者不符合纳入标准，因此对 115 例进行了分析。分析显示，一个因子可以解释总方差的 49.2%。所有因子负荷均>0.40，信度较高（克朗巴赫α=0.80）。ESSS 总分较高与焦虑（GAD-7，r=0.54，P<0.001）和抑郁（NDDI-E，r=0.45，P<0.001）、自尊降低（RSES，r=-0.41，P<0.001）、整体 QOL（r=-0.40，P<0.001）和整体健康（r=-0.35，P<0.001）相关，但与癫痫知识（r=0.03，P=0.770）无关。在德国，女性、年轻患者、发病较早的患者和患有全身性癫痫的患者自我污名程度明显更高。
德文版 ESSS 证明是可靠和有效的。它可以评估治疗策略降低自我污名的效果，并进行癫痫自我污名的跨文化比较。
