MAPPING THE CONSENT PROCESS FOR TRANSGENDER YOUTH: A CONTENT ANALYSIS OF CONSENT FORMS FOR GENDER-RELATED CARE

Purpose: Recent clinical guidelines emphasize protection against harm, the involvement of mental health professionals, youth assent, and parental permission for transgender (TG) adolescents considering pubertal suppression (PS) and gender-affirming hormones (GAHs). The guidelines do not, however, address the process of obtaining minor assent and parental permission or issues that increase the complexity of consenting to PS and GAHs. This study aims to describe and compare informed consent processes across clinical sites providing PS and GAHs. This study is the first to look at variations in consent processes as a step towards refining decision support and informed consent processes that address the specific needs of TG youth and their families. Methods: As part of a larger, IRB-approved survey about informed consent processes, providers of gender-related care to adolescents uploaded informed consent forms for PS and GAHs. Publicly available consent forms were also found through a web search. We conducted content analysis on all consent forms using quantitative and qualitative methods. Published clinical guidelines and ethical norms from the Endocrine Society and the World Professional Association for Transgender Health (WPATH) for obtaining minor assent and parental permission were used to develop a coding instrument to evaluate form content, tone, and style. Eleven core elements of informed consent were identified and analyzed across all forms. Four additional elements were identified and analyzed specifically for GAH consent forms. Results: 28 informed consent forms were analyzed (eight for pubertal suppression, ten for testosterone and ten for estrogen). Percentage agreement (87.5%) and kappa score (0.71) measuring inter-rater reliability were calculated and suggested substantial agreement. 96% (n=27) of consent forms utilized short phrases or bullet points and 71% (n=20) did not use jargon. Only 50% (n=5) of the PS consent forms had all 11 core elements, and one included less than half. 80% (n=16) of GAH consent forms contained between 10 to 15 core elements and 20% (n=4) had less than 10 of the core elements. Mental health provider involvement was mentioned in 87.5% (n=7) of PS forms, but was only present in 50% (n=10) of GAH forms. Risks of treatment were included in 100% of forms and explicitly named in 93% (n=26). However, only 29% (n=8) of forms explicitly identified impacts of PS or GAHs as benefits. 82% (n=23) of all forms included a signature l