Key Points
Question
What is the prevalence of epilepsy in the sexual and gender minoritized population in the United States, and how does it compare with the prevalence of epilepsy in heterosexual, cisgender individuals?
Findings
This cross-sectional study found that the prevalence of active epilepsy was 1.2% in heterosexual, cisgender people and 2.4% in people of sexual and gender minoritized groups.
Meaning
The findings suggest that the burden of epilepsy is high in people of sexual and gender minoritized groups, who are already at high risk of stigmatization, discrimination, and poor health outcomes.
Abstract
Importance
Epilepsy is a highly treatable condition for many people, but there are large treatment gaps with suboptimal seizure control in minoritized groups. The sexual and gender minority (SGM) community is at risk for health disparities, yet the burden of epilepsy in this community is not known.
Objective
To estimate the prevalence of active epilepsy among SGM people in the United States.
Design, Setting, and Participants
This was a cross-sectional, nationally representative survey study of community-dwelling US adults who answered questions about epilepsy, sexual orientation, and gender identity in the 2022 National Health Interview Survey (NHIS).
Exposure
Self-identification of transgender or gender-diverse identity, or sexual orientation including gay, lesbian, bisexual, or other orientation, excluding straight (ie, heterosexual).
Main Outcomes and Measures
Participants self-reported epilepsy status, medical treatment, seizure frequency, demographic characteristics, sexual orientation, and gender identity. Logistic regression was used to estimate the association of epilepsy with SGM identification.
Results
A total of 27 624 participants (15 050 [54%] women; 3231 [12%] Black; mean [SD] age, 48.2 [18.5] years) completed the NHIS and were included. Active epilepsy was present in 1.2% (95% CI, 1.0%-1.3%) of the population. A higher proportion of SGM adults than non-SGM adults reported active epilepsy (2.4% [95% CI, 1.4%-3.3%] vs 1.1% [95% CI, 1.0%-1.3%], respectively). After adjusting for age, race, ethnicity, income, and education, SGM people were more than twice as likely to report active epilepsy than were non-SGM adults (adjusted odds ratio, 2.14; 95% CI, 1.35-3.37).
Conclusions and Relevance
The findings suggest that SGM adults in the United States have a disproportionate prevalence of epilepsy. The reasons for this disparity are likely complex and may be associated with biological and psychosocial determinants of health unique to this population; as such, these individuals are in need of protected access to medical care.
This cross-sectional study using data from the 2022 National Health Interview Survey estimates the prevalence of active epilepsy among people of sexual and gender minoritized groups in the United States.
Introduction
Transgender and gender-diverse (TGD) individuals report reduced health-related quality of life compared with cisgender individuals.1 Similarly, sexual and gender minority people (SGMP; encompassing TGD individuals and those of gay, lesbian, bisexual, queer, and other [LGBQ+] sexual orientations) may face discrimination in the health care setting, leading to negative health outcomes and increased mortality.2 People with epilepsy (PWE) also have low health-related quality of life,3 yet epilepsy is highly treatable for many people with appropriate access to care. These disparities may be additive or synergistic, yet little research has investigated the overlap between these groups.
TGD people experience discordance between their sex assigned at birth (male or female) and their internal sense of gender4 (man, woman, both, neither, or something else). Individuals with concordant gender identity and sex assigned at birth are termed cisgender. Gender identity is distinct from sexual orientation, which refers to attraction, and from sex, which refers to physical organs, chromosomes, and hormones.
Neurologic disparities affect the SGM community. For example, transgender women undergoing feminizing hormone therapy are at elevated risk of multiple sclerosis5 and stroke.6 There are also theoretical hormonal effects on seizures. Exogenous estrogen may exacerbate seizure frequency in cisgender PWE.7 One study found that chronic conditions, including epilepsy, are elevated in transgender compared with cisgender Medicare beneficiaries.8 However, the prevalence of epilepsy in the general SGM population is unknown.
This study uses a nationally representative survey to estimate the proportion of SGM adults with epilepsy in the US and explores whether SGM status is associated with epilepsy.
Methods
The National Health Interview Survey (NHIS) is administered annually by the Centers for Disease Control and Prevention (CDC). Randomly selected community-dwelling adults from all US states and the District of Columbia answer questions about their lives, including demographic characteristics, medical conditions, and social factors. The NHIS uses oversampling and weighting for nonresponses to represent the entire US adult population.9 We used data from 2022, the only year from which data include questions about epilepsy, sexual orientation, and gender identity.
The NHIS is approved by the Research Ethics Review Board of the National Center for Health Statistics. All NHIS respondents provided oral consent prior to participation. This study was deemed exempt by the Johns Hopkins Institutional Review Board as no identifiable information is used. This study follows the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline.
Epilepsy Definition
In 2022, the NHIS asked participants whether they had ever been told by a health professional they have epilepsy or a seizure disorder; if yes, the number of seizures in the past year; and whether they use medication to treat seizures. Using the CDC’s definition,10 we defined active epilepsy as a diagnosis of epilepsy and either current use of antiseizure medication or at least 1 seizure in the past year.
Sexual Orientation and Gender Identity
The NHIS queried participants about sexual orientation and gender identity separately. Sexual orientation choices were gay or lesbian; straight (ie, heterosexual); bisexual; or something else. In 2022, the NHIS queried participants about current gender identity and sex assigned at birth (eMethods in Supplement 1). Gender identity data are a restricted use variable. We classified individuals as SGMP if they reported TGD identity or reported sexual orientation as gay, lesbian, bisexual, or something else (excluding straight).
Covariates
Participants reported age, race, ethnicity, education, history of depression, and household income9 (eMethods in Supplement 1).
Statistical Analysis
We conducted analyses in Stata version 18.0 (StataCorp LLC) with sampling weights from the NHIS. We used t tests or χ2 tests to compare characteristics between participants with and without epilepsy. We used logistic regression to determine the association between SGM status and epilepsy, adjusting for age, race, education, ethnicity, and income. Sensitivity analysis adjusted for depression. Two-tailed P < .05 was considered statistically significant.
Results
A total of 27 624 participants (15 050 [54%] women; 3231 [12%] Black; mean [SD] age, 48.2 [18.5] years) representing 255 174 326 adults through weighted sampling provided data. Active epilepsy was present in 1.2% (95% CI, 1.0%-1.3%) of participants, representing 3 039 455 individuals. A higher proportion of SGM adults than non-SGM adults reported active epilepsy (2.4% [95% CI, 1.4%-3.3%] vs 1.1% [95% CI, 1.0%-1.3%]). PWE were more likely than people without epilepsy to report being of White race or other or multiracial race, non-Hispanic ethnicity, lower educational attainment, and lower household income and to have depression (Table 1). Among people with and without epilepsy, SGMP had younger age distribution (Table 1).
Table 1. Population Characteristics of People With vs Without Active Epilepsy by SGM Status From the 2022 National Health Interview Surveya.
| Characteristic | Without epilepsy, % | With epilepsy, % | P value | ||||
|---|---|---|---|---|---|---|---|
| All (n = 252 100 000) | SGM (n = 16 639 000) | Non-SGM (n = 235 461 000) | All (n = 3 039 000) | SGM (n = 401 000) | Non-SGM (n = 2 638 000) | ||
| Age, y | |||||||
| 18-24 | 11.5 | 33.5 | 10.0 | 8.5 | 26.3 | 6.1 | .18 |
| 25-34 | 17.3 | 24.7 | 16.6 | 15.8 | 29.8 | 13.6 | |
| 35-44 | 16.8 | 14.4 | 16.8 | 17.9 | 19.6 | 17.2 | |
| 45-54 | 15.6 | 9.1 | 16.2 | 18.2 | 12.5 | 18.4 | |
| 55-65 | 16.4 | 9.1 | 17.1 | 21.5 | 8.4 | 24.2 | |
| ≥65 | 22.3 | 9.3 | 23.4 | 18.1 | 3.4 | 20.6 | |
| Raceb | |||||||
| Asian American or Pacific Islander | 6.2 | 4.3 | 6.3 | 0.9 | 1.6 | 0.8 | <.001 |
| American Indian or Alaska Native | 1.9 | 1.9 | 1.8 | 6.5 | 9.3 | 6.0 | |
| Black | 11.9 | 10.6 | 11.9 | 12.1 | 7.8 | 12.8 | |
| White | 72.2 | 72.7 | 72.1 | 74.8 | 78.3 | 74.3 | |
| Other or multiple | 1.5 | 3.9 | 1.3 | 1.7 | 0.0 | 1.9 | |
| Not ascertained | 6.4 | 6.5 | 6.4 | 4.1 | 3.0 | 4.2 | |
| Ethnicityb | |||||||
| Hispanic | 17.3 | 16.7 | 17.3 | 11.0 | 5.2 | 11.9 | .02 |
| Non-Hispanic | 82.7 | 83.3 | 82.7 | 89.0 | 94.8 | 88.1 | |
| Education | |||||||
| <HS diploma | 17.0 | 12.7 | 17.3 | 30.3 | 29.8 | 30.4 | <.001 |
| HS diploma | 24.5 | 25.5 | 24.4 | 32.3 | 31.7 | 32.4 | |
| Some college | 25.7 | 29.3 | 25.4 | 22.8 | 20.1 | 23.2 | |
| Bachelor’s degree | 20.3 | 21.0 | 20.3 | 9.9 | 5.9 | 10.5 | |
| Master’s or doctorate degree | 12.5 | 11.5 | 12.6 | 4.7 | 12.5 | 3.5 | |
| Household income to poverty threshold ratio | |||||||
| <1.0 | 9.4 | 13.1 | 9.1 | 24.6 | 29.3 | 23.9 | <.001 |
| 1.0-1.99 | 17.6 | 18.9 | 17.6 | 20.6 | 14.2 | 21.5 | |
| 2.0-2.99 | 16.1 | 16.0 | 16.1 | 16.4 | 4.6 | 18.2 | |
| 3.0-3.99 | 13.0 | 13.6 | 13.0 | 12.1 | 10.2 | 12.4 | |
| 4.0-4.99 | 11.3 | 10.8 | 11.4 | 11.8 | 15.4 | 11.3 | |
| ≥5.0 | 32.6 | 27.7 | 32.9 | 14.6 | 26.4 | 12.8 | |
| Depression | 18.1 | 43.0 | 16.3 | 44.14 | 50.5 | 43.2 | <.001 |
Abbreviations: HS, high school; SGM, sexual and gender minority.
The community-dwelling US population is represented by the 27 624 weighted, sampled participants.
Self-reported in the 2022 National Health Interview Survey.
The majority (64.7%) of PWE had no seizures in the past year. However, 16.1% of PWE reported 4 or more seizures in the past year.
Of all respondents, 6.6% reported LGBQ+ sexual orientation (representing 16 million individuals), and 0.67% reported TGD identity (representing 1.6 million individuals). TGD individuals had high prevalence of depression (67% vs 18% in cisgender individuals; P < .001), as did PWE (44% vs 18% in people without epilepsy; P < .001).
SGMP were twice as likely to have active epilepsy as non-SGMP (odds ratio [OR], 2.13; 95% CI, 1.38-3.29); 3.5% of transgender individuals, 1.5% of gender-diverse individuals, and 2.4% of LGBQ+ individuals had active epilepsy vs 1.1% of non-SGMP. After adjusting for covariates, SGMP remained twice as likely to report active epilepsy (adjusted OR, 2.14; 95% CI, 1.35-3.37) (Table 2). In sensitivity analysis adjusting for depression, the association was moderately reduced (adjusted OR, 1.67; 95% CI, 1.001-2.60).
Table 2. Association of Sexual and Gender Minority Identity With Active Epilepsy.
| Analysisa | OR (95% CI) | P value |
|---|---|---|
| Model 1: unadjusted | 2.13 (1.38-3.29) | .001 |
| Model 2: adjusted for age, race, ethnicity | 2.17 (1.41-3.35) | .01 |
| Model 3: plus education, income | 2.14 (1.35-3.37) | .001 |
| Sensitivity analysis: plus depression | 1.61 (1.001-2.60) | .05 |
Model 1 includes sexual and gender minority identity only. Model 2 adjusts for age, race, and ethnicity. Model 3 also adjusts for education and income. Sensitivity analysis (model 4) also adjusts for depression.
Discussion
The prevalence of reported active epilepsy was higher in SGMP than non-SGMP. These results persisted after adjusting for demographic factors.
There are several possible explanations. Minority stress theory states that the accumulation of effects of systemic biases and discrimination contributes to the health disparities of SGMP.11 SGMP 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.11,12 Other potential contributions for epilepsy in SGMP may be an increased risk of physical assault13 or substance abuse.4 Functional neurologic symptoms (including nonepileptic seizures) may also be elevated in SGMP14 and could lead to self-reported epilepsy diagnosis.
Limitations
Limitations include reliance on participant-reported epilepsy. Nevertheless, this method of ascertaining active epilepsy is used by the CDC to determine the burden of epilepsy in the US population, making these results appropriate for comparing epilepsy in SGMP and non-SGMP. Participants may be reluctant to report SGM status to an interviewer, even anonymously; however, this would most likely bias results toward the null. Additionally, the cross-sectional design of this study precludes evaluation of temporal associations between epilepsy and SGM identity. Additional neurologic comorbidities could not be included, precluding any causal conclusions. Small numbers prevent further subgroup analysis among TGD individuals. Strengths include the novel characterization of prevalence of epilepsy in the SGM population in this large, rigorously constructed, nationally representative sample; the definition of active epilepsy, which does not require recent evaluation by an epilepsy specialist (subject to bias from differential health care access); and self-report of SGM identity, which does not rely on claims codes subject to misclassification.
Conclusions
This study found that the prevalence of active epilepsy was higher in SGMP than non-SGMP. Future research with patient-level data is needed to determine the causes of the high prevalence of epilepsy in SGMP. Of particular importance will be a comparison of seizure types in SGMP with epilepsy and best practices for ensuring access to care and treating epilepsy in this population.
eMethods. Supplemental Methods
Data Sharing Statement
References
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Associated Data
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Supplementary Materials
eMethods. Supplemental Methods
Data Sharing Statement