Abstract
1- Introduction
2- Methods
3- Results
4- Discussion
Acknowledgments
References
Abstract
Purpose: The purpose of this study was to evaluate differences in stigma, disclosure management of epilepsy, and knowledge about epilepsy between patients with epilepsy who recognized and did not recognize the new Korean term for epilepsy.
Methods: This was a cross-sectional, multicenter study. The Stigma Scale-Revised, the Disclosure Management Scale, the Patient Health Questionnaire-9, and a questionnaire assessing knowledge about epilepsy were used. The set of questionnaires had two versions, using either the old or new name for epilepsy. Multivariate logistic regression analyses were used.
Results: A total of 341 patients with epilepsy and 509 family members were recruited. Approximately 62% of patients felt some degree of epilepsy-related stigma. Mild stigma, severe concealment of epilepsy diagnosis, and increased knowledge about epilepsy were independently identified as factors associated with recognition of the new term in patients. Recognition of the new term was more prevalent in patients and family members with higher education, female family members, and family members having patients with younger age at seizure onset and shorter duration of epilepsy. There were no significant differences between the two types of questionnaires. About 81% of patients and 93% of family members had a positive attitude about renaming epilepsy.
Conclusion: The use of the new Korean term for epilepsy (cerebroelectric disorder) increased knowledge about epilepsy but did not reduce stigma and concealment of epilepsy diagnosis in Korean adults with epilepsy. Higher education may be an important factor for knowing the new term in patients and family members.
Introduction
Epilepsy is one of the first described neurological diseases and is considered a stigmatizing condition [1]. In spite of the teachings of Hippocrates (460–۳۷۰ BC) that epilepsy is a physical illness, misconceptions regarding the cause of epilepsy became predominant in the Middle Ages [2]. Currently, misconceptions regarding epilepsy have nearly disappeared or are rapidly declining worldwide [3]. However, patients with epilepsy continue to suffer from stigma, as well as social restriction and discrimination, in everyday activities, such as going to school, driving, working, and obtaining insurance [4–۶], not only in the developing world but also in the West [4]. In a large European study, half of patients with epilepsy experienced feelings of stigma associated with epilepsy diagnosis [7]. This perception significantly impacts the quality of life of patients with epilepsy [4,7,8].