Have attitudes toward epilepsy improved in Germany over the last 50 years?

Thorbecke, Rupprecht; Pfäfflin, Margarete; Bien, Christian G.; Hamer, Hajo M.; Holtkamp, Martin; Rating, D.; Schulze‐Bonhage, Andreas; Straub, Hans-Beatus; Strzelczyk, Adam; May, Theodor W.

doi:10.1016/j.yebeh.2022.108982

Cited by 10 publications

(12 citation statements)

References 56 publications

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“…In addition to epileptic seizures, many patients report chronically impaired cognitive function and psychiatric symptoms, such as mood disorders [ 9 ], and these typical symptoms are difficult to treat. Adults with epilepsy often suffer from additional stigma and discrimination that negatively affect their QoL [ 10 , 11 ].…”

Section: Introductionmentioning

confidence: 99%

Determinants of quality of life in adults with epilepsy: a multicenter, cross-sectional study from Germany

Siebenbrodt

Willems

Podewils

et al. 2023

Neurol. Res. Pract.

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Background Assessment of quality of life (QoL) has become an important indicator for chronic neurological diseases. While these conditions often limit personal independence and autonomy, they are also associated with treatment-related problems and reduced life expectancy. Epilepsy has a tremendous impact on the QoL of patients and their families, which is often underestimated by practitioners. The aim of this work was to identify relevant factors affecting QoL in adults with epilepsy. Methods This cross-sectional, multicenter study was conducted at four specialized epilepsy centers in Germany. Patients diagnosed with epilepsy completed a standardized questionnaire focusing on QoL and aspects of healthcare in epilepsy. Univariate regression analyses and pairwise comparisons were performed to identify variables of decreased QoL represented by the overall Quality of Life in Epilepsy Inventory (QOLIE-31) score. The variables were then considered in a multivariate regression analysis after multicollinearity analysis. Results Complete datasets for the QOLIE-31 were available for 476 patients (279 [58.6%] female, 197 [41.4%] male, mean age 40.3 years [range 18–83 years]). Multivariate regression analysis revealed significant associations between low QoL and a high score on the Liverpool Adverse Events Profile (LAEP; beta=-0.28, p < 0.001), Hospital Anxiety and Depression Scale – depression subscale (HADS-D; beta=-0.27, p < 0.001), Neurological Disorders Depression Inventory in Epilepsy (NDDI-E; beta=-0.19, p < 0.001), revised Epilepsy Stigma Scale (beta=-0.09, p = 0.027), or Seizure Worry Scale (beta=-0.18, p < 0.001) and high seizure frequency (beta = 0.14, p < 0.001). Conclusion Epilepsy patients had reduced QoL, with a variety of associated factors. In addition to disease severity, as measured by seizure frequency, the patient’s tolerability of anti-seizure medications and the presence of depression, stigma, and worry about new seizures were strongly associated with poor QoL. Diagnosed comorbid depression was underrepresented in the cohort; therefore, therapeutic decisions should always consider individual psychobehavioral and disease-specific aspects. Signs of drug-related adverse events, depression, fear, or stigmatization should be actively sought to ensure that patients receive personalized and optimized treatment. Trial Registration German Clinical Trials Register (DRKS00022024; Universal Trial Number: U1111-1252-5331).

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Section: Introductionmentioning

confidence: 99%

Determinants of quality of life in adults with epilepsy: a multicenter, cross-sectional study from Germany

Siebenbrodt

Willems

Podewils

et al. 2023

Neurol. Res. Pract.

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“…Negative attitudes toward PWE may further facilitate these obstacles, but fortunately stigmatization has declined significantly in the last decades. 6 Low mobility due to driving restrictions or fear of seizures in the public may lead to social withdrawal and less activity participation. Furthermore, comorbidities such as depression or anxiety may cause relationship problems and social distancing or even social isolation.…”

Section: Introductionmentioning

confidence: 99%

“…For instance, ongoing seizures, frequent hospital visits, or low social skills may reduce educational and employment opportunities. Negative attitudes toward PWE may further facilitate these obstacles, but fortunately stigmatization has declined significantly in the last decades 6 . Low mobility due to driving restrictions or fear of seizures in the public may lead to social withdrawal and less activity participation.…”

Section: Introductionmentioning

confidence: 99%

Subjective cognition is linked to everyday functioning in epilepsy

et al. 2023

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“…Furthermore, a study from Germany reported that one in 10 children believed epilepsy was contagious 6 . On the other hand, attitudes toward epilepsy from the general public have improved over the last 50 years in Germany 7 . However, when meeting a person with epilepsy, 30.1% of the general public would feel insecure or uncomfortable, and nearly 60% were concerned that PWE might be injured in case of a seizure 7 .…”

Section: Introductionmentioning

confidence: 99%

“…6 On the other hand, attitudes toward epilepsy from the general public have improved over the last 50 years in Germany. 7 However, when meeting a person with epilepsy, 30.1% of the general public would feel insecure or uncomfortable, and nearly 60% were concerned that PWE might be injured in case of a seizure. 7 Individuals with epilepsy may encounter several forms of discrimination, preventing them from employment opportunities, discouraging their participation in school activities, and jeopardizing their romantic relationships.…”

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confidence: 99%

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

et al. 2023

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ObjectiveSelf‐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.MethodsWe 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).ResultsOne 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.SignificanceThe 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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Have attitudes toward epilepsy improved in Germany over the last 50 years?

Cited by 10 publications

References 56 publications

Determinants of quality of life in adults with epilepsy: a multicenter, cross-sectional study from Germany

Determinants of quality of life in adults with epilepsy: a multicenter, cross-sectional study from Germany

Subjective cognition is linked to everyday functioning in epilepsy

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

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