PMON278 Research Priorities of Gender Diverse Adults: What is Most Important to the Community?
Authors: Kline Danielle M , Iwamoto Sean J , Warner Lindsey , Rothman Micol S , Loeb Danielle , Schilling Lisa M , Mancuso Mary P , Nokoff Natalie 
Published: November 2022

Background

There is a growing awareness surrounding gender diversity and the critical need for more robust research and evidence to guide gender-affirming healthcare, including gender-affirming hormone therapy (GAHT). Research priorities are often determined by clinicians and researchers; we lack data about the transgender and gender diverse (TGD) community's priorities for research.

Objective

To determine the research priorities of adult TGD patients who receive care at a multidisciplinary gender-affirming clinical program at a tertiary academic medical center.

Design/Methods

IRB-approved electronic surveys were sent to 719 patients who sought care from the program in the last year. Participants were asked to rank research topics within six domains based on the importance of the topic to their care: 1) care access/utilization within the program, 2) GAHT impacts on the body, 3) GAHT concerns/potential adverse effects, 4) gender-affirming surgeries, 5) mental health, and 6) navigating healthcare/work/school, with 6-7 choices in each category, including a free text option to fill out their own research priority.

Results

135 individuals consented and responded to the survey (19% response rate). Almost half were aged 18-29 years (45%), and several were aged 50 years or older (16%). Nearly all identified as white (92%). Participants were able to check more than one response for these demographics: feminine gender identity (55%; inclusive of female, transgender female, and/or transfeminine); masculine gender identity (37%; inclusive of male, transgender male, and/or transmasculine), nonbinary (25%), and/or something else (25%).

The top two research priorities (by % respondents ranking the topic as most important) within each of the six domains were: 1) care access/utilization within the program: have insurance coverage for gender-affirming care (66%), have gender-affirming surgery (33%); 2) GAHT impacts on the body: overall feminizing/masculinizing effects (81%), mental health/mood (69%); 3) GAHT concerns/potential adverse effects: heart health (54%), blood clots/stroke (47%); 4) gender-affirming surgeries: common complications (57%), post-op sexual function/pleasure (51%); 5) mental health: GAHT (59%) and surgeries (46%) impact on suicide risk; and 6) navigating healthcare/work/school: barriers to accessing care (61%), training community providers (58%). Fertility was ranked as the least important research priority. Research on the discontinuation of gender-affirming interventions and regret in getting gender-affirming surgery were also ranked as low priorities.

Conclusions

TGD adults receiving care at a tertiary academic medical center ranked GAHT's effects on overall feminization/masculinization, mental health/suicide risk, common surgery complications, and cardiovascular health as top research priorities. They also indicated a desire for more research on barriers to accessing care, especially insurance coverage and provider education. Compared to other topics, fertility was ranked as the least important research priority. The TGD community's research priorities should be used to inform TGD health funding and researcher priorities to ensure that research evidence leads to improvements in patient-centered gender-affirming care.

Presentation: Monday, June 13, 2022 12:30 p.m. - 2:30 p.m.