Background: Compared to their cisgender peers, transgender and gender diverse (TGD) youth experience poorer mental and physical health and higher levels of medical trauma, healthcare access barriers, and discrimination in healthcare settings. Despite this, TGD youth are seeking gender-affirming medical intervention in record numbers, access to which is modified by caregivers and healthcare professionals. Youth cannot consent for their own treatment and even supportive caregivers may be reluctant to authorize gender-affirming medical intervention. Within healthcare, youth experience excessive barriers to care access, and providers report insufficient gender-health training, resources, and support. Research for this population rarely involves stakeholder input, and no known efforts have integrated the perspectives of youth, caregivers, and healthcare professionals into research planning.
Proposed Solution to the Problem: The project team will convene TGD youth, caregivers for TGD youth, and healthcare professionals who serve TGD youth to first identify care gaps and then articulate and prioritize patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) directions. This project is novel in its integration of stakeholders into the development of research priorities and the identification of overlapping perspectives of these three interrelated groups.
Objectives: The primary objectives of this project are to:
i. Define and prioritize stakeholder-specific gaps and opportunities in gender-affirming care and research for TGD youth.
ii. Develop and share three to five PCOR/CER directions informed and prioritized by each stakeholder group.
Activities: The project team will hold six convening sessions of six to eight stakeholders representative of the project’s three target populations (two convening sessions per stakeholder group). To diversify and broaden the perspectives of each stakeholder group, the project team will deploy a survey to 75 additional members of each stakeholder group following each convening session. The first of these sessions and surveys will explore care gaps and opportunities, focusing on each stakeholder group’s experience and perspectives surrounding gender-affirming care access, delivery, and experience. During the second set of convening sessions, stakeholders will develop three to five PCOR/CER directions, which will then be ranked by survey respondents. Findings will be shared with each stakeholder group and the larger research community.
Projected Outcomes and Outputs:
Short-term outcomes during the project period include the delivery of fully articulated PCOR/CER directions for TGD youth created and prioritized by stakeholders through the completion of six convening sessions, 450 surveys, and presentations. The project team will also establish a TGD Youth Stakeholder Advisory Council to lend guidance and input surrounding research and clinical care for gender diverse youth.
Medium-term outcomes (0-2 years post-project period) include applying for research funding based on one or more of this project’s defined PCOR/CER directions and ongoing partnership with the newly established advisory council.
Long-term outcomes (3+ years post-project period) include the establishment of a robust program of youth gender health research in a community healthcare setting.
Patient and Stakeholder Engagement Plan: The project team includes a stakeholder lead from each group who will engage in the planning and execution of convening sessions, surveys, and summary presentations. Seven additional stakeholder representatives will participate in each convening session. To broaden perspectives of each group, surveys will engage 75 additional stakeholders from each group to provide insight surrounding gender affirming care gaps and prioritize PCOR/CER directions.