Abstract, published in Epilepsy & Behavior
Purpose: We investigated felt stigma in seizure-free persons with epilepsy with regard to associated factors and its impact on health-related quality of life (HRQoL).
Methods: This cross-sectional study included 81 patients who had been seizure free for at least 2 years and 52 controls who had only had one seizure in the last 2 years. All patients completed the Stigma Scale, Quality of Life in Epilepsy Inventory-31 (QOLIE-31), short form of the Eysenck Personality Questionnaire-Revised (EPQ-RS), Hospital Anxiety Depression Scale (HADS), Rosenberg Self-esteem Scale, and the enacted stigma questionnaire.
Results: The proportion of felt stigma was not significantly different between controls (25%) and patients in seizure remission (21%). A stepwise logistic regression analysis revealed that enacted stigma and higher EPQ-RS Neuroticism scores were more likely to be associated with felt stigma of patients in remission. Quality of Life in Epilepsy Inventory-31 scores were significantly higher in patients in seizure remission than in controls. In the stepwise linear regression analysis, felt stigma was not associated with the total QOILE-31 scores. Sobel tests showed that felt stigma had indirect effects on the QOLIE-31 scores through EPQ-RS Neuroticism scores, but its statistical significance was lost after controlling for the presence of enacted stigma, anxiety, and depressive symptoms.
Conclusion: One-fifth of seizure-free patients continued to feel stigmatized, even though they had not had a seizure in more than 2 years. Experience of enacted stigma and a neurotic personality trait were the most important correlates of felt stigma for these patients. Health-related quality of life was significantly better in patients in remission than in patients with rare seizures. Felt stigma was not a significant or independent factor associated with worse health-related quality of life in patients in remission.