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

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 develo...

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Main Authors: Izumi Kuramochi, Takayuki Iwayama, Christian Brandt, Haruo Yoshimasu, Christian G. Bien, Anne Hagemann
Format: Article
Language:English
Published: Wiley 2023-09-01
Series:Epilepsia Open
Subjects:
Online Access:https://doi.org/10.1002/epi4.12765
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author Izumi Kuramochi
Takayuki Iwayama
Christian Brandt
Haruo Yoshimasu
Christian G. Bien
Anne Hagemann
author_facet Izumi Kuramochi
Takayuki Iwayama
Christian Brandt
Haruo Yoshimasu
Christian G. Bien
Anne Hagemann
author_sort Izumi Kuramochi
collection DOAJ
description 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.
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spelling doaj.art-ae7dc870a1994e3eafb91dc30e3f43112023-09-01T09:39:51ZengWileyEpilepsia Open2470-92392023-09-018394695810.1002/epi4.12765Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)Izumi Kuramochi0Takayuki Iwayama1Christian Brandt2Haruo Yoshimasu3Christian G. Bien4Anne Hagemann5Department of Epileptology (Krankenhaus Mara) Bielefeld University, Medical School Bielefeld GermanyDepartment of Psychiatry, Saitama Medical Center Saitama Medical University Saitama JapanDepartment of Epileptology (Krankenhaus Mara) Bielefeld University, Medical School Bielefeld GermanyDepartment of Psychiatry, Saitama Medical Center Saitama Medical University Saitama JapanDepartment of Epileptology (Krankenhaus Mara) Bielefeld University, Medical School Bielefeld GermanySociety for Epilepsy Research Bielefeld GermanyAbstract 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.https://doi.org/10.1002/epi4.12765construct validityfactor analysispeople with epilepsyreliabilityself‐stigma
spellingShingle Izumi Kuramochi
Takayuki Iwayama
Christian Brandt
Haruo Yoshimasu
Christian G. Bien
Anne Hagemann
Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)
Epilepsia Open
construct validity
factor analysis
people with epilepsy
reliability
self‐stigma
title Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)
title_full Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)
title_fullStr Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)
title_full_unstemmed Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)
title_short Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)
title_sort assessment of self stigma in epilepsy validation of the german version epilepsy self stigma scale esss g
topic construct validity
factor analysis
people with epilepsy
reliability
self‐stigma
url https://doi.org/10.1002/epi4.12765
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