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Defining Success in the Delivery of Fertility-Related Care for Patients with Differences of Sex Development.

Authors :
Streich-Tilles, Tara
Morrison, Aimee
Schafer-Kalkhoff, Tara
Gardner, Melissa
Suorsa-Johnson, Kristina I.
Baskin, Alison
Weidler, Erica M.
van Leeuwen, Kathleen
Sandberg, David E.
Rutter, Meilan M.
Source :
Hormone Research in Paediatrics. Aug2024, p1-10. 10p. 3 Charts.
Publication Year :
2024

Abstract

<bold><italic>Introduction:</italic></bold> Individuals with differences of sex development (DSD) experience complex, often competing, medical and psychosocial challenges surrounding fertility. The study aimed to characterize how “success” in fertility-related care is conceptualized and attained among individuals with a DSD, their parents or caregivers, healthcare providers, and other stakeholders. <bold><italic>Methods:</italic></bold> As part of a larger study, DSD stakeholders (<italic>n</italic> = 110) participated in semi-structured interviews covering the clinical care of patients with DSD. Primary questions included “What is a successful outcome in DSD care?” and “How do you achieve it?” with fertility as either a spontaneous or suggested topic of discussion. Transcripts were analyzed utilizing a phenomenological approach. This analysis focuses on the extracted themes related to fertility. <bold><italic>Results:</italic></bold> Fertility was discussed by 19/24 individuals with DSD, 12/19 parents or caregivers, 35/37 healthcare providers, and 19/30 other stakeholders. Components of successful fertility-related care included (1) specific discussions surrounding the relationship between DSD and fertility potential, options for fertility preservation, and options for non-biologic parenthood; (2) early and repeated introduction of these topics; and (3) consideration of age, developmental maturity, and cultural context on decisions around fertility. Challenges included the lack of fertility outcome data in this population and the irreversibility of gonadectomy. Trade-offs identified included anatomic typicality versus function, fertility preservation versus cancer risk reduction, and balancing the different priorities of stakeholders. <bold><italic>Discussion/Conclusions:</italic></bold> A wide range of DSD stakeholders highlighted the importance of addressing fertility concerns in achieving favorable outcomes for individuals with DSD. These stakeholder perspectives should inform fertility-related education, shared decision-making processes, and clinical care. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
16632818
Database :
Academic Search Index
Journal :
Hormone Research in Paediatrics
Publication Type :
Academic Journal
Accession number :
180029259
Full Text :
https://doi.org/10.1159/000541029