Quality of Life in Sexual and Gender Minorities: A Pioneer Cross-sectional Study
Levi Barros1, Aya ElHassan1, Julianne Brooks1, Caroline Banfi2, Maria Donahue1, Chelsea Wong3, Z L'Erario4, Alison Kukla5, Brandy Fureman5, Jeffrey Buchhalter6, Sahar Zafar1, Lidia Maria Moura1
1Massachusetts General Hospital, 2Boston University, 3Hebrew Senior Life, 4LGBTQI Section, American Academy of Neurology, 5Epilepsy Foundation of America, 6Buchhalter Consulting PLLC
Objective:
Determine quality of life characteristics among sexual and gender minority (SGM) people living with epilepsy.
Background:
SGM people account for 8% of the total American adult population.1 Nonetheless, epilepsy data regarding SGM people are scarce.2 Data on physical and mental quality of life (QOL) aspects among SGM people with epilepsy (PWE) are unknown.
Design/Methods:
As part of a quality improvement initiative, data was collected using electronic patient-report questionnaires from January 2019 to September 2023 in a tertiary epilepsy clinic. We analyzed PWE’s physical and mental QOL aspects using the PROMIS-10 questionnaire. We categorized patients by sexual orientation and gender identity. Descriptive statistics were performed comparing SGM patients to cisgender heterosexual patients.
Results:
Data regarding sexual orientation was available for 2230 patients, of whom 164 (7.35%) identified as sexual minority people. Data regarding gender identity was available for 2623 patients, of whom 24 (0.91%) identified as transgender. Only 25 SGM (including 3 transgender) patients and 433 cisgender heterosexual patients completed PROMIS 10 questionnaires. Among cisgender heterosexual patients, median values from mental and physical sections of PROMIS 10 were 45.8 (IQR 14.5) and 50.8 (IQR 15.4) respectively. Median values among all SGM patients were 41.1 (IQR 14.5) and 47.7 (IQR 11.8) respectively. Median values among sexual minority patients were 43.55 (IQR 25.2) and 46.3 (IQR 14.85), respectively. Median values among transgender people were 53.30 (IQR 37.8) and 42.30 (IQR 15.9), respectively
Conclusions:
Our data suggest different QOL metrics when stratified by gender identity and sexual orientation. No test of significance was performed due to the high rates of missing data, which calls for further research to improve data completion that may reveal healthcare disparities among SGM people.