Presentation description

Adolescents and young adults (AYAs) with differences of sex development (DSD) make complex clinical management decisions. DSD encompasses congenital conditions where chromosomal, gonadal, or anatomic sex development is atypical. Within the context of a scarcity of high-quality outcome data, AYAs with DSD must weigh uncertain benefits against uncertain harms for a range of treatment options. Currently, little is known about the specific decision-making needs and experiences of this population. Therefore, we aimed to examine the experience of AYAs making decisions about their DSD. AYAs with DSD, (n=10; mean age=16.3 years; range=12-21 years), from one US children's hospital, completed hour-long interviews focused on their involvement and experiences related to DSD decision-making. Interviews were recorded, transcribed, and emerging themes were identified. In particular, AYAs noted involvement in numerous decisions, including surgical removal of the gonads, phalloplasty, method of delivery for hormone replacement therapy, puberty blockers, gender identity, wearing a medical alert bracelet, obtaining peer support, and sharing information with family members, friends, or romantic partners., AYAs added that there were factors and challenges potentially influencing decision-making, more specifically, internalized and enacted stigma, the amount of support received from caregivers/providers, difficulty understanding medical information/decision options, and fear of surgery. One challenge includes fear of stigmatization influencing medical decision-making. The use of decision aids is one evidence-based approach to support decision-making, but their effectiveness with AYAs is unclear. Future directions include the development of interventions (e.g., decision aids) to address the decisional needs of AYAs with DSD.