Work

Stigma, attitude, and knowledge of epilepsy in Italy: A survey on 1159 subjects

Year: 2026

Type: article

Abstract: OBJECTIVE: Stigma remains a major determinant of impaired quality of life (QoL) in people with epilepsy (PwE). We aimed to investigate perceptions of epilepsy-related stigma in the Italian general population, assess knowledge of epilepsy and seizure first aid, and identify factors associated with stigmatizing attitudes. METHODS: We conducted a cross-sectional, anonymized online survey using a structured questionnaire. The instrument comprised four sections: (1) sociodemographic characteristics; (2) epilepsy-related knowledge and perceptions; (3) seizure first aid (12 items on correct and incorrect actions during a seizure, summarized into the Seizure First Aid Knowledge Score (SAFE score - range 0-12); and (4) stigma assessment using the validated Stigma Scale of Epilepsy (SSE). Multivariate linear regression was used to explore predictors of stigma. RESULTS: A total of 1159 individuals completed the survey (mean age 36.9 ± 16.2 years; 64.6% women). SSE demonstrated excellent internal consistency (Cronbach's α = 0.89-0.90). Women reported higher stigma than men (53.1 ± 16.8 vs. 48.6 ± 17.6; p < 0.001). Participants from Southern Italy had significantly higher SSE scores compared to Central or Northern regions (53.4 ± 17.5 vs. 48.1 ± 16.4 and 49.8 ± 16.0; p < 0.001). Healthcare professionals reported lower stigma compared with PwE, relatives, or individuals without epilepsy (47.6 ± 17.2 vs. 55.6 ± 18.1, 51.8 ± 16.0, and 52.0 ± 17.2; p = 0.023). A higher SAFE score was inversely associated with stigma (β = -0.89, p = 0.013). Although most participants recognized appropriate first aid measures, misconceptions persisted: 38.1% endorsed inserting hands into the mouth during seizures, and 24.5% considered physical restraint appropriate. SIGNIFICANCE: Stigma persists in Italy, particularly among women and residents of Southern regions. Tailored educational interventions may both improve seizure safety and mitigate stigma, ultimately enhancing QoL for PwE. PLAIN LANGUAGE SUMMARY: Epilepsy is often associated with negative attitudes that can affect the well-being of people living with the condition. In this study, we surveyed adults across Italy to understand how epilepsy is perceived, how much people know about seizure first aid, and how stigma varies across different groups. We found that stigma remains common, especially among women and people living in Southern Italy, while better knowledge of how to help during a seizure was linked to lower stigma. These results highlight the importance of public education to improve understanding, safety, and social inclusion.

Source: Epilepsia Open

DOI: 10.1002/epi4.70225