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Decision-Making In Gonadectomy And Gonadal Tissue Cryopreservation For Adolescents/Young Adults And Parents Of Individuals With Differences Of Sex Development: A Qualitative Study
Lauren E. Corona, MD1, Ashley Talton, BS2, Josephine Hirsch, BA2, Ilina Rosoklija, MPH2, Jax Whitehead, MD2, Jaclyn Papadakis, PhD2, Diane Chen, PhD2, Courtney Finlayson, MD2, Earl Y. Cheng, MD2, Elizabeth B. Yerkes, MD2, Emilie K. Johnson, MD, MPH2.
1Vanderbilt University Medical Center, Nashville, TN, USA, 2Lurie Children's Hospital, Chicago, IL, USA.


Background: Since 2013, our institution has offered experimental gonadal tissue cryopreservation (GTC) at the time of prophylactic gonadectomy for individuals with increased tumor risk in the setting of differences of sex development (DSD). The decision on whether to proceed with GTC is challenging for numerous reasons: the experimental nature of the procedure and uncertainty of future reproductive success, the uncertain viability of germ cells, the chance of genetic transmission, costs, ethical considerations, gonadal malignancy risks, and possible discordance between gender identity and germ cells. In this qualitative study, we sought to examine the decision-making experiences of adolescents and young adults (AYA) with DSD who underwent prophylactic gonadectomy (with or without GTC) and parents of individuals with DSD to inform future fertility-related healthcare needs in DSD.Methods: Participants were identified and invited to participate if they were: 1) AYA with a DSD diagnosis at increased risk for gonadal tumor seen in our multidisciplinary clinic that underwent gonadectomy at age 11 years or older, or 2) a parent of an individual with DSD seen in our clinic that underwent gonadectomy at any age. Semi-structured interviews were conducted, coded, and analyzed using an iterative inductive-deductive approach between 2022-2023. Participants were asked questions related to the decision-making process for both gonadectomy and GTC and completed a survey upon conclusion of the interview with demographic questions and a validated satisfaction with decision scale (Holmes-Rovner). Results: 18 participants were included (7 AYA, 6 parents of AYA (range 11.5-20 years at gonadectomy), 5 parents of children ages 1-3 years at gonadectomy). Median age of AYA participants was 19 years at interview and 16.7 years at gonadectomy. A diversity in DSD diagnoses, surgery-to-interview interval, gender, race/ethnicity, education, and religion were represented. Overall, participants had difficulty in separating the gonadectomy and GTC decisions in the interviews. In addition, false memory of the GTC decision was not uncommon: while 2 (29%) AYA and 6 (55%) parents consented to GTC, 4 (57%) AYA and 7 (64%) parents self-reported having done so. Decisional satisfaction was high for AYA and parents (Figure). Decisional barriers/facilitators regarding gonadectomy and GTC and decisional influences/motivators are presented in the Table. Across interviews, participants described the personal aspects to decision-making, the role (both positive and negative) of options in decision-making, and embracing hope. Parents discussed challenges of proxy-decision making and the importance of preservation of options for the future, while AYA demonstrated high levels of decisional commitment. Conclusions: Participant perspectives demonstrate the complexity of decision-making and proxy decision-making in DSD. Decision-making in gonadectomy and GTC is highly individual in this heterogenous population. This highlights the need for provider openness, shared decision-making, and psychological support before, during, and after these challenging decisions.


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