Felt stigma proportion in people living with epilepsy: A systematic review

Abstract

Purpose: Numerous inventories to identify felt stigma (FS) in people living with epilepsy (PLWE) have been developed. Past studies have mainly focused on the relationship between FS scores and clinical factors, making it challenging to delineate FS proportions and compare FS between groups. We aimed to integrate FS proportions in PLWE and compare them by continent. Methods: We searched MEDLINE, EMBASE, the Cochrane Library, Web of Science, and Scopus. Among the identified studies, we chose the ones providing an FS proportion measured by Jacoby's Stigma Scale (JSS) and its revised version (JSS-R) in PLWE. We applied the random-effects model. Results: A total of 63 datasets from 47 studies were included. There were 29,924 PLWE, with 14,323 of them experiencing FS. The overall FS proportion was 48.4%. Of these datasets, 51 used JSS, and 12 used JSS-R. The FS proportions were 44.9% for the former and 62.1% for the latter, with significant heterogeneity. In the intercontinental comparison with 51 datasets employing JSS, the difference in FS proportions was insignificant: 51.2% in Africa, 47.2% in Europe, 35.4% in Asia, and 28.8% in the Middle East. Furthermore, the meta-regression revealed that the year of each primary study did not influence the FS proportion. Conclusion: Among PLWE, FS proportions depended on the choice of a measurement tool. When measured using JSS, the FS proportion was 44.9%, while it was 62.1% when evaluated with JSS-R. Even though the FS proportions were integrated differently, no substantial differences were observed between continents. © 2023 British Epilepsy Association