Assessment of Self-stigma in Epilepsy: Validation of the German Version Epilepsy Self-Stigma Scale (ESSS-G)

Overview

Journal Epilepsia Open

Date 2023 May 31

PMID 37254471

Authors

Izumi Kuramochi

Takayuki Iwayama

Christian Brandt

Haruo Yoshimasu

Christian G Bien

Anne Hagemann

Affiliations

Soon will be listed here.

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.

Citing Articles

Evaluation of self-stigma in patients with epilepsy: Validation of the self-stigma scale to Spanish (ESSS-S).

Manzanares I, Kuramochi I, Olivera M, Centeno M, Khawaja M, Pintor L Epilepsia Open. 2024; 9(6):2384-2394.

PMID: 39492676 PMC: 11633716. DOI: 10.1002/epi4.13071.

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

Kuramochi I, Iwayama T, Brandt C, Yoshimasu H, Bien C, Hagemann A Epilepsia Open. 2023; 8(3):946-958.

PMID: 37254471 PMC: 10472374. DOI: 10.1002/epi4.12765.

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