Authors :
Presenting Author: Maria Donahue, MD – Massachusetts General Hospital
Julianne Brooks, MPH – Senior Data Analyst, Neurology, Massachusetts General Hospital; Kathleen Farrell, MB BCh BAO – Vice President, Public Health and Outcomes, Epilepsy Foundation of America; Jeffrey Buchhalter, MD PhD – Epilepsy Foundation of America; Sahar Zafar, MD MSc – Massachusetts General Hospital; Brandy Fureman, PhD – Epilepsy Foundation of America; Lidia Moura, MD PhD MPH – Neurology – Massachusetts General Hospital
Rationale: 14.8 million people in the United States identify as LGBTQ+, and it is estimated that 390 per 100,000 adults in the United States population are transgender adults (Meerwijk and Sevelius 2017). However, the LGBTQ+ (which includes the transgender or gender-queer population) population health status and healthcare disparities are poorly understood (Crissman et al. 2017). Genderqueer individuals are at a heightened risk of developing depression and anxiety, which are highly prevalent among people with epilepsy, leading to poor quality of life and suicide (Gibson et al. 2021). There is little to no real-world data on seizure control in the LGBTQ+ community. In this study, we report the early insights of a national registry that identifies depression and quality of life stratified by gender identity.
Methods: We conducted a cross-sectional analysis to compare the proportion of individuals with seizure control between cis-gender men and women and other gender identities. The data was collected at an adult academic institution as part of a national quality improvement initiative, the Epilepsy Learning Healthcare Systems (ELHS), from 2019 to 2023. Standardized data elements, including demographics, gender identity, PHQ-9, and PROMIS 10 (depression and quality of life screening tools), were collected. We grouped gender queer, gender non-conforming, transgender, and others into “genderqueer” and man and woman into “cis-gender.” The data were analyzed using R programming language and then stratified by gender identity, depression severity, and quality of life.
Results: Our sample included 816 individuals, predominantly cis-gender female (54%), genderqueer white (83%), and cis-gender non-Hispanics (87%). 94.7% (N = 773) of the patients completed PHQ-9, PROMIS-10, and reported gender identity. Our cross-sectional analysis did not reveal a substantial difference in depression or quality of life between gender-queer and cis-gender individuals (Figure 1). The mean PHQ-9 score for the cis-gender group was 5.1 (SD=5.8) and 4.56 (SD=5.5) for the genderqueer group. As for PROMIS 10, the cis-gender group had a mean score of 32.8 (SD=5.8) and the genderqueer group had a mean score of 33.8. (SD=4.9).
Conclusions: Our registry offers the groundwork for future research on LGBTQ+ individuals with epilepsy. Our findings highlight the need to continue collecting non-binary data and advocate for the LGBTQ+ population with epilepsy.
Funding:
The Epilepsy Learning Healthcare System is supported by grants from PCORI and the James M. Anderson Center for Health Systems Excellence (RI-PCC-2017 (sub: 03699), the CDC (1NU58DP006256-02-00), the National Association of Epilepsy Centers, Greenwich Biosciences, Eisai, and Sunovion. Although funded by the CDC, the contents of this publication are solely the responsibility of the Epilepsy Foundation and do not necessarily represent the views of the CDC.