Transgender and Gender Diverse People with Epilepsy
Abstract number :
2.075
Submission category :
16. Epidemiology
Year :
2024
Submission ID :
784
Source :
www.aesnet.org
Presentation date :
12/8/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: MarieElena Byrnes, DO, MS – Epilepsy Center, Neurological Institute, Cleveland Clinic
Alina Ivaniuk, MD – Mayo Clinic Florida
Desiree Markantone, MD – Cleveland Clinic
Mia Probinsky, DO, MS – Cleveland Clinic
Antonia Nwankwo, MD – Cleveland Clinic
Jessica Fesler, MD – Cleveland Clinic
Rationale: Transgender (TG) and gender-diverse (GD) people represent a growing proportion of people with epilepsy (PWE). Despite this, no studies have addressed epilepsy care in this population. In addition, TG and GD people have been shown to have a high burden of psychiatric comorbidity that may be compounded by healthcare discrimination. Here, we close the gap by characterizing demographic, epileptic, gender-affirming care (GAC), and psychiatric history in a cohort of TG and GD people with epilepsy receiving care at our institution.
Methods: This single-center, cross-sectional study included TG and GD people with epilepsy older than 18 years. The cohort was identified by electronic health record (EHR) screening for transgender-specific ICD-10 codes, or non-correspondence of the sex assigned at birth and gender identity, or disclosure of gender as TG, combined with ICD-10 codes for epilepsy. Resulting EHRs were reviewed manually and diagnoses were verified. The following descriptive variables were collected: sex at birth, gender, age, marriage status, ethnicity/race, insurance status, employment status, epilepsy type (focal vs generalized), history of invasive epilepsy treatment, antiseizure medication (ASM) prescriptions, psychiatric diagnoses, history of GAC (hormonal treatment or gender-affirming surgery only), history of suicidal ideation (SI) and attempt (SA) along with the history of psychogenic nonepileptic events (PNEE). Variables were analyzed using median and interquartile range given their non-parametric nature. Fisher’s exact test and Wilcoxon test with FDR correction for multiple comparisons were used to compare categorical and continuous variables, respectively.
Results: Sixty-five patients met inclusion criteria. Forty (61.5%) identified as TG while the other 25 patients (38.5%) identified as GD. Median age was 28 [22.5;43.5], 38 (58.5%) patients born of the female sex. Thirty-three patients (50.8%) had focal epilepsy, with 4 (6%) undergoing some form of invasive treatment. The cohort had a median of 2 [1;3] historical ASMs, and 1 [1;2] current ASM. Thirty-four patients (52.3%) had undergone GAC. When separated into groups of those who identify as TG versus GD or those who received GAC versus not; the two groups, when looking at epilepsy history, ASMs and mechanism of action of ASMs along with psychiatric comorbidities, did not differ. Of the cohort, 44 patients (68%) had a history of suicidal ideation; 23 (35%) with history of suicide attempt and 19 (29%) with comorbid PNEE.
Conclusions: There exists no epidemiologic or peer-reviewed data on TG or GD patients with epilepsy. We looked at 65 GD or TG epilepsy patients. When stratified based on a variety of demographic and epilepsy related factors, patients who identify as TG or GD and those with GAC vs without, were similar. Although there were no striking differences between the groups, our data shows interestingly high rates of SI. 68% of patients had a history of this, along with 35% with SA. This being 3 and 6 times the rates reported in the literature, respectively.1 The rate of comorbid PNEE in our cohort was 29%, similar to what has been reported.2
Funding: None.
Epidemiology