Barros Levi C M, Banfi Caroline, Brooks Julianne D, Donahue Maria A, ElHassan Aya, Wong Chelsea N, L'Erario Z Paige, Fureman Brandy E, Buchhalter Jeffrey, Zafar Sahar, Kukla Alison, Moura Lidia M V R
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.
Neurol Clin Pract. 2025 Feb;15(1):e200379. doi: 10.1212/CPJ.0000000000200379. Epub 2024 Oct 8.
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.
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.
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.
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.
近年来，性少数和性别少数群体（SGM）的可见度一直在稳步提高；然而，对于患有癫痫的SGM人群独特的癫痫发作和心理健康特征，我们知之甚少。在本研究中，我们描述了SGM亚组中的这些特征。
作为2019年1月至2023年9月在马萨诸塞州综合医院常规临床护理的一部分，在首次癫痫门诊就诊时通过患者报告的问卷收集人口统计学、癫痫发作指标、心理健康和生活质量数据。SGM人群被定义为同时完成性取向和性别认同问卷，并报告非异性恋的性取向和/或非顺性别者的性别认同的人群。癫痫发作控制定义为1年或更长时间无癫痫发作。焦虑、抑郁和生活质量数据通过有序量表（分别为广泛性焦虑障碍量表-7、患者健康问卷-9和患者报告结果测量信息系统10）收集。使用描述性统计来比较组间数据。由于本研究的描述性性质，未进行关联检验。
在4046份首次就诊问卷中，2166份（53.53%）有性取向和性别认同信息，其中143份（6.6%）受访者被确定为SGM。27名（65.85%）异性恋顺性别受访者和401名（62.95%）异性恋顺性别受访者有癫痫发作控制。SGM受访者和异性恋顺性别受访者的患者健康问卷-9（抑郁）中位数分别为5（四分位间距[IQR]8）和3（IQR 6），广泛性焦虑障碍量表-7（焦虑）分别为4（IQR 7）和3（IQR 10），患者报告结果测量信息系统10-心理分别为41.1（IQR 14.5）和45.8（IQR 14.5），患者报告结果测量信息系统10-身体分别为47.7（IQR 11.8）和50.8（IQR 15.4）。
本研究首次概述了SGM人群中独特的癫痫、心理健康和生活质量指标。关于性取向和性别认同领域的调查回复比例较低，表明癫痫诊所需要改进数据收集方法。
