Decision-making experiences in gonadectomy and gonadal tissue cryopreservation for adolescents/young adults and parents of individuals with differences of sex development: A qualitative study.
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BACKGROUND: Our institution offers experimental gonadal tissue cryopreservation (GTC) at the time of prophylactic gonadectomy for malignancy risk for individuals with differences of sex development (DSD). Decisions about GTC are challenging for numerous reasons: the experimental nature of the procedure and uncertainty of future reproductive success, costs, possibility of heritability of the condition, and possible discordance between gender identity and germ cells. OBJECTIVE: In this qualitative study, we sought to examine gonadectomy and GTC decision-making experiences of parents and patients to inform future healthcare needs in DSD. STUDY DESIGN: Adolescents/young adults (AYA) with a DSD diagnosis at increased risk for gonadal tumor who underwent gonadectomy at ≥11 years and parents of individuals with DSD who underwent gonadectomy at any age were recruited. Semi-structured interviews were conducted and analyzed using an iterative inductive-deductive approach between 2022 and 2023. Participants were asked about the decision-making experience for both gonadectomy and GTC and completed a demographic survey and the validated Holmes-Rovner Satisfaction with Decision Scale. Decisional influences (emotional, informational, and contextual factors shaping participant choices) were identified and thematically synthesized. RESULTS: 18 participants were included (7 AYA, 6 parents of AYA, 5 parents of young children). Median age of AYA participants was 19 years at interview and 16.7 years at gonadectomy. 57 % (4/7) of AYA and 72 % (8/11) of parent participants self-reported a decision to cryopreserve gonadal tissue prior to gonadectomy. We identified four major themes of the decision-making experience: 1) decisional recall, 2) decisional satisfaction, 3) decisional influences, and 4) hope and options. Overall, participants had difficulty in separating gonadectomy and GTC decisions in the interviews. Three participants incorrectly remembered their tissue disposition decision. Decisional satisfaction was high for AYA and parents. Decisional influences were categorized into 6 subthemes: medical, personal and family, trust and support, social and environmental, logistical and practical, and outcomes and expectations. Across interviews, participants described the role (both positive and negative) of options and hope in decision-making. DISCUSSION: Participant perspectives demonstrate the complexity of personal and proxy decision-making surrounding gonadectomy and GTC in DSD. Limitations of this study include the small eligible participant pool and findings from a single institution with this experimental protocol. CONCLUSIONS: Our findings highlight the importance of engaging patients and families in shared decision-making, aligning personal goals with values. These decisions carry significant emotional and cognitive burdens, underscoring the need for multidisciplinary care inclusive of psychological support and continuous, structured discussions throughout the care continuum.