Transition from Pediatric to Adult Care for Transgender Youth: A Qualitative Study of Patient, Parent, and Provider Perspectives

Purpose: No information exists on the needs of transgender youth transitioning their gender-affirming health care from pediatric to adult settings. We obtained perspectives of transgender youth, their parents, and providers, and aimed to identify barriers and unmet needs during the transition of care. Methods: Five online focus groups were conducted between February and March 2019 with separate groups for transgender youth 13-17 and 18-21 years old; parents of transgender youth 13-17 and 18-21 years old; and gender-affirming health care providers. Thematic analysis of transcripts was conducted by two researchers. Pooled Cohen's κ was 0.83, indicating excellent inter-rater reliability. Results: Sixty-six participants (29 youth, 27 parents, and 10 providers) identified 10 themes. Themes related to barriers to transition included access and insurance challenges, patient readiness and hesitancy to transfer care, and multidisciplinary-system inefficiencies. Themes related to improving transition focused on prioritizing referrals from trusted sources, establishing gradual patient independence, aligning gender transition goals, and setting impetus for transferring care. Conclusion: Successful health care transition for transgender youth must consider the intricacies of a complex medical system and challenges that they pose to adolescents' perceived abilities to independently manage health care and willingness to prepare transfer of care. Given that patients, parents, and providers assume important roles during the process, each can uniquely contribute toward ensuring a smooth transition. Efforts to improve this process should focus on enhancing collaboration between clinics and families through crowdsourcing resources, continued verification of health goals, supporting greater patient autonomy, and delineating an explicit timeline for transition.