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. 2024 Aug 26:1-10.
doi: 10.1159/000541029. Online ahead of print.

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

Tara Streich-Tilles  1 , Aimee Morrison  1 , Tara Schafer-Kalkhoff  2 , Melissa Gardner  3 , Kristina I Suorsa-Johnson  4 , Alison Baskin  3 , Erica M Weidler  5   6 , Kathleen van Leeuwen  5   6 , David E Sandberg  3 , Meilan M Rutter  2
Affiliations

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

Tara Streich-Tilles et al. Horm Res Paediatr. .

Abstract

Introduction: 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.

Methods: As part of a larger study, DSD stakeholders (n = 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.

Results: 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.

Discussion/conclusions: 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.

Keywords: Differences of sex development; Disorders of sex development; Fertility; Qualitative research.

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Conflict of interest statement

Conflicts of Interest: E.M.W. is the paid Executive Director of Accord Alliance. The authors have no other conflicts of interest to declare.

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