Results from a survey study suggest the burden of epilepsy is high in sexual and gender minority patient populations, who already experience high risk of stigmatization, discrimination, and poor health outcomes.
In a new nationally representative survey study published in JAMA Neurology, responses showed that the prevalence of active epilepsy was higher in sexual and gender minority (SGM) patients than non-SGM patients. These survey results suggest that SGM adults have a disproportionate prevalence of epilepsy in the United States, with reasons likely linked to biological and psychosocial determinants of health unique to this patient population.1
In the survey, responses showed that SGM patients were twice as likely to have active epilepsy as non-SGM patients (odds ratio [OR], 2.13; 95% CI, 1.38-3.29). Notably, 3.5% of transgender individuals, 1.5% of gender-diverse individuals, and 2.4% of LGBQ+ individuals reported active epilepsy compared with 1.1% of non-SGM patients. Following the adjustment of covariates, SGM patients still were twice as likely to report active epilepsy (adjusted OR, 2.14; 95% CI, 1.35-3.37). Additionally, the association was moderately reduced when researchers adjusted for depression in a sensitivity analysis (adjusted OR, 1.67; 95% CI, 1.001-2.60).
“There are several possible explanations,” lead author Emily L. Johnson, MD, MPH, assistant professor in the department of neurology at Johns Hopkins University School of Medicine, and colleagues wrote.1 “Minority stress theory states that the accumulation of effects of systemic biases and discrimination contributes to the health disparities of SGM patients. SGM patients in the US may face eroded protections for self-identification and access to gender-affirming care, internalized stigma, and tangible threats of violence and harassment. These experiences can lead to detrimental physical and mental health effects due to physiological sequelae of chronic stress.”
Investigators used 2022 data from the National Health Interview Survey, which is considered the only year where the data included questions about epilepsy, sexual orientation, and gender identity.2 Authors used the CDC’s definition to define active epilepsy as a diagnosis of epilepsy and either current antiseizure medication use or at least 1 seizure in the past year.3 Researchers also classified patients as SGM if they reported transgender and gender-diverse (TGD) identity or reported sexual orientation as gay, lesbian, bisexual, or something else that is not recognized as straight in the survey.
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Among 27,624 participants (women, 54%; Black, 12%; mean age, 48.2 [SD, 18.5 years), active epilepsy was present in 1.2% (95% CI, 1.0%-1.3%) of patients. Patients with epilepsy were more likely than those without epilepsy to identify as White or other or multiracial race, non-Hispanic ethnicity, lower educational attainment, and lower household income and to experience depression. In participants with and without epilepsy, SGM patients were reported at a younger age distribution.
In the past year, authors reported that the majority (64.7%) of patients with epilepsy had no seizures; however, 16.1% of patients with epilepsy reported 4 or more seizures. Among all respondents, 6.6% of patients reported LGBQ+ sexual orientation, and 0.67% reported TGD identity. Patients who identified as TGD had high prevalence of depression (67% in comparison with 18% reported in cisgender patients; P <.001), as did patients with epilepsy (patients without epilepsy, 44% vs 18%; P < .001).
Limitations of this study included reliance on participant-reported epilepsy although authors noted that this method of ascertaining active epilepsy was used by the CDC to identify the burden of epilepsy in the US population. Another limitation was that patients might have been reluctant to report SGM status during the survey even anonymously. In addition, this study's design precludes assessment of temporal associations between epilepsy and SGM identity. Furthermore, researchers noted that other neurologic comorbidities were not included and that small numbers prevented additional subgroup analysis among TGD patients.
“Other potential contributions for epilepsy in SGM patients may be an increased risk of physical assault or substance abuse. Functional neurologic symptoms (including nonepileptic seizures) may also be elevated in SGM patients and could lead to self-reported epilepsy diagnosis,” Johnson et al noted.1 “Future research with patient-level data is needed to determine the causes of the high prevalence of epilepsy in SGM patients. Of particular importance will be a comparison of seizure types in SGM patients with epilepsy and best practices for ensuring access to care and treating epilepsy in this population.”
