528 - Research priorities of gender diverse youth and their families

Poster Number: 528
Publication Number: 528.107

Lindsey A. Warner, University of Colorado Anschutz Medical Campus, Department of Pediatrics, Denver, CO, United States; Claudia M. Douglas, Seattle Children's, Seattle, WA, United States; Sean J. Iwamoto, University of Colorado School of Medicine, Aurora, CO, United States; Daniel H. Reirden, University of Colorado School of Medicine, Aurora, CO, United States; Natalie J. Nokoff, University of Colorado School of Medicine, Aurora, CO, United States

Background: There is a growing awareness surrounding gender diversity and more research initiatives in gender-affirming health. Gender-affirming healthcare refers to interdisciplinary care which includes puberty blockade, hormone therapy, surgery, and behavioral health support. Research priorities are often determined by clinicians, researchers, with a paucity of data about the gender diverse community’s priorities for future research.

Objective: To determine the research priorities of patients and families at a gender-affirming clinic at a tertiary, pediatric medical center.

Design/Methods: IRB-approved electronic surveys were sent to 1,453 active patients/families at the TRUE Center for Gender Diversity at Children’s Hospital Colorado. Participants were asked to rank research topics from most to least important in six domains: clinic-specific outcomes, gender-affirming medications, gender-affirming surgeries, mental health, school, and family, with 4-7 choices in each category, including a free text option to fill out their own research priority.

Results: 210 individuals responded to the survey (14% response rate). Demographics are in Table 1; the majority were patients (54%), 38% were parents/guardians, and 8% filled it out together. More than half were white (56%). Survey responses are in Table 2; the highest-ranked responses are included here. Clinic-specific outcomes: “how best to transition to adult care” (61%); “insurance coverage for gender-affirming medicines/surgeries” (48%). Outcomes of gender-affirming medicines: impact on mental health (74%); overall feminizing/masculinizing effects (62%). Adverse medication effects: research on blood clots/stroke (50%) and heart health (46%). Gender-affirming surgeries: research on common (73%) and serious complications (43%). Mental health: “do gender-affirming medicines/surgeries decrease suicidality?” (67% for medicines, 48% for surgeries). School: “what percentage of gender diverse children/adolescents experience discrimination, harassment or bullying?” (40%). Families: “does feeling supported by family decrease suicidality in gender diverse children/adolescents?” (43%). Questions about fertility preservation were most often ranked as the least important.Conclusion(s): Patients and families at a single, large tertiary care gender program ranked research around mental health and mood as highly important, as well as possible adverse effects of gender-affirming medical therapies and complications of surgeries. Researchers should be aware of the priorities of the community.
Table 1*Note the following demographic variables were select all that apply. Several variables had missing data, including age of patient, percentages are out of the total n.
Table 2 page 1