Health Disparities Among Sexual and Gender Minority People Living With Epilepsy: A Cross-Sectional Analysis

Levi C M Barros; Caroline Banfi; Julianne D Brooks; Maria A Donahue; Aya ElHassan; Chelsea N Wong; Z Paige L'Erario; Brandy E Fureman; Jeffrey Buchhalter; Sahar Zafar; Alison Kukla; Lidia M V R Moura

doi:10.1212/CPJ.0000000000200379

Health Disparities Among Sexual and Gender Minority People Living With Epilepsy: A Cross-Sectional Analysis

Neurol Clin Pract. 2025 Feb;15(1):e200379. doi: 10.1212/CPJ.0000000000200379. Epub 2024 Oct 8.

Affiliation

¹ Neurology Department (LCMB, JDB, MAD, AE, SZ, LMVRM), Massachusetts General Hospital; Boston University School of Public Health (CB); Department of Medicine and Marcus Institute for Aging Research at HSL (CNW), Division of Gerontology at BIDMC, Harvard Medical School; Greenburgh Pride (ZPLE); LGBTQI Section, American Academy of Neurology; Epilepsy Foundation of America (BEF, AK); and Buchhalter Consulting (JB), PLLC.

PMID: 39399565
PMCID: PMC11464218 (available on 2026-02-01)
DOI: 10.1212/CPJ.0000000000200379

Abstract

Background and objectives: Visibility of sexual and gender minority (SGM) people has been steadily increasing over the recent years; however, little is known about the distinct seizure and mental health characteristics among SGM people with epilepsy. In this study, we describe these characteristics among SGM subgroups.

Methods: Data on demographics, seizure metrics, mental health, and quality of life were collected using patient-reported questionnaires gathered at first epilepsy clinic visits as part of routine clinical care from January 2019 to September 2023 at Massachusetts General Hospital. SGM people were defined as people who completed both sexual orientation and gender identity questionnaires and reported a sexual orientation other than heterosexual and/or a gender identity other than cisgender. Seizure control was defined as 1 year or more without experiencing seizures. Anxiety, depression, and quality-of-life data were collected through ordinal scales (GAD-7, PHQ-9, and PROMIS 10, respectively). Descriptive statistics were used to compare data between groups. No association test was performed because of the descriptive nature of this study.

Results: From 4,046 first-visit questionnaires, 2,166 (53.53%) had sexual orientation and gender identity information, with 143 (6.6%) of these respondents identified as SGM. Seizure control was present in 27 (65.85%) and 401 (62.95%) heterosexual cisgender respondents. Median values of SGM and heterosexual cisgender respondents were 5 (interquartile range [IQR] 8) and 3 (IQR 6) for PHQ-9 (depression), 4 (IQR 7) and 3 (IQR 10) for GAD-7 (anxiety), 41.1 (IQR 14.5) and 45.8 (IQR 14.5) for PROMIS-10-Mental, and 47.7 (IQR 11.8) and 50.8 (IQR 15.4) for PROMIS-10-Physical, respectively.

Discussion: This study provides one of the first overviews of distinct epilepsy, mental health, and quality-of-life metrics among SGM people. The low proportion of survey responses regarding sexual orientation and gender identity fields indicate the need for improved data collection methods in epilepsy clinics.