Research Data Associate NYU Grossman School of Medicine
This abstract has been invited to present during the Better Patient Outcomes through Diversity Platform poster session
Rationale: Perceived stigma is a significant challenge for people with epilepsy (PWE). Stigma is associated with discrimination, shame, lack of social support, and social isolation, which impact quality of life and disease self-management. Given disparities in knowledge and attitudes about epilepsy in the Hispanic community, Hispanic PWE may be particularly vulnerable to the social effects of stigma. We analyzed baseline data from a longitudinal study of Hispanic PWE to examine associations between perceived epilepsy-related stigma and aspects of social functioning. Methods: English and Spanish-speaking Hispanic PWE with elevated depressive symptoms (n=72) were enrolled in a behavioral intervention trial from epilepsy clinics at NYU Langone and Bellevue Hospital in New York City. Participants completed validated self-report measures of depressive symptoms (Patient Health Questionnaire [PHQ-9]), perceived social support (Interpersonal Support Evaluation List), quality of life (Quality of Life in Epilepsy [QOLIE-10-P]), and perceived stigma (Epilepsy Stigma Scale [ESS]) at baseline. Additional data included age, gender, marital status, employment status, language, immigration status, age of epilepsy onset, and seizures within the past 12 months. Summary variables are expressed as mean±SD. Pearson’s correlations, t-tests and multiple regression analyses were conducted to test associations between perceived stigma and sociodemographic, clinical and psychosocial factors. Results: Participants were 43.1±11.3 years old, mostly female (70.8%) and had epilepsy onset at age 17.9±14.1 years. The majority of participants were unmarried (68.1%), unemployed (69.4%), Spanish-speaking (66.7%), and born outside the U.S. (72.1%). Most (73.6%) reported having at least one seizure in the past 12 months and having elevated depressive symptoms (PHQ9≥5; 80.4%). In bivariate analyses, higher perceived stigma was associated with greater depressive symptoms (p=0.017), younger age of epilepsy onset (p=0.022), having ≥1 seizure in the past 12 months (p=0.048), being employed (p=.042), lower social support (p=0.027), and higher concern about social limitations (p=0.009). Age, education, income, marital status, immigration status and language were not significantly associated with stigma. When adjusted for age of onset and seizures in the past 12 months in the regression model, higher perceived stigma was associated with lower social support (p=0.033) and higher concern about social limitations (p=0.001). These associations were unchanged after additional adjustment for depression and quality of life. Conclusions: In this sample of Hispanic PWE, perceived epilepsy-related stigma was associated with lower social support and greater concern about social limitations, independent of seizures, depressive symptoms, quality of life, and key sociodemographic characteristics. Contrary to hypotheses, aspects of acculturation were not related to stigma. Although limited by the cross-sectional design, these findings suggest that the experience and effects of stigma in Hispanic PWE should be explored in future studies. Funding: Please list any funding that was received in support of this abstract.: U48DP005008, Centers for Disease Control and Prevention
