Background : Transgender and gender expansive (TG/GE) youth face barriers to healthcare and are at high risk for poor medical and psychosocial outcomes including mental illness, substance abuse, suicide, infection with HIV and other STDs, homelessness, and experiences of violence and victimization. Health-related quality of life (HRQOL) assessments can provide insight into patients’ self-perceived physical and mental health and may identify and help to prioritize healthcare needs.
1. To quantify HRQOL of TG/GE youth in the GWC Registry
2. To compare the HRQOL of TG/GE youth receiving care at the rural GWC to standardized population norms
Methods : Sample: Pediatric patients (ages 8-21) receiving gender-affirming care and enrolled in the GWC Registry (N=142).
HRQOL is assessed at baseline and every two years thereafter using the Child Health Questionnaire-87 (CHQ-87) for youth <18 years of age and the Short Form-36 (SF-36v2) for youth ages 18-21.
One-sample z-tests (CHQ) and independent two-sample t- tests (SF-36) were used to compare QOL scores of TG/GE youth with US Population Norms; CHQ scores were also compared to scores of youth with two chronic conditions. Linear regressions were performed to test associations between demographic, clinical and mental health variables captured in the Registry and HRQOL subscale scores.
Results : 142 youth were enrolled in the Registry (97% recruitment rate); QOL data were available for 89% of registry participants (N=127).
TG/GE youth scored significantly lower than U.S. norms and youth with two chronic conditions on all subscales, with the exception of the “role/social limitations – physical” subscale. Anxiety disorder diagnosis and history of suicidal ideation or attempt were significantly associated with lower physical functioning (p=0.013; p=0.040) and lower mental health (p=0.023; p=0.038) subscale mean scores. History of non-suicidal self-injury (NSSI) and family history of mental illness were also significantly associated with lower mental health subscale mean score (p=0.031; p=0.047).
TG/GE youth scored significantly higher than the 2009 U.S. norm on the physical functioning, physical role, bodily pain, general health and physical component summary scales. TG/GE youth scored significantly lower on the social functioning, mental health, emotional role, and mental component summary scales. Anxiety disorder diagnosis was significantly associated with lower mental component summary mean score (p=0.031); youth with anxiety scored significantly lower on the social functioning (p=0.018) and mental health (p=0.033) subscales. Youth with a history of NSSI scored significantly lower on the vitality (p=0.049) and mental health (p=0.035) subscales. Socially transitioned youth scored significantly higher on the social functioning subscale (p=0.040); youth who had undergone gender confirmation surgery scored significantly higher on the physical functioning subscale (p=0.003).
Conclusions : Cross-sectional HRQOL data from a registry of TG/GE youth indicate significantly poorer mental health measures as compared with the U.S. general population. Youth