Challenges of disorders of sex development: Diverse perceptions across stakeholders

Barry A. Kogan, Melissa Gardner, Adrianne N. Alpern, Laura M. Cohen, Mary Beth Grimley, Alexandra L. Quittner, David E. Sandberg

Research output: Contribution to journalArticlepeer-review

17 Scopus citations


Background/Aims: Disorders of sex development (DSD) are congenital conditions in which chromosomal, gonadal, or anatomic sex development is atypical. Optimal management is patient- and family-centered and delivered by interdisciplinary teams. The present pilot study elicits concerns held by important stakeholders on issues affecting young patients with DSD and their families. Methods: Content from focus groups with expert clinicians (pediatric urologists (n = 7), pediatric endocrinologists (n = 10), mental health professionals (n = 4), DSD patient advocates (n = 4), and interviews with parents of DSD-affected children (newborn to 6 years; n = 11) was coded and content-analyzed to identify health-related quality of life issues. Results: Key stressors varied across stakeholder groups. In general, family-centered issues were noted more than child-centered. In the child-centered domain, providers worried more about physical functioning; family and advocates emphasized gender concerns and body image. In the family-centered domain, parental concerns about medication management outweighed those of providers. Advocates reported more stressors regarding communication/information than other stakeholders. Conclusion: Variability exists across stakeholder groups in the key concerns affecting young children/families with DSD. Interdisciplinary DSD healthcare team development should account for varying perspectives when counseling families and planning treatment.

Original languageEnglish (US)
Pages (from-to)40-46
Number of pages7
JournalHormone Research in Paediatrics
Issue number1
StatePublished - Aug 2012


  • Disorders of sex development
  • Health-related quality of life
  • Interdisciplinary teams
  • Mental health professionals
  • Pediatric endocrinology
  • Pediatric urology

ASJC Scopus subject areas

  • Endocrinology
  • Endocrinology, Diabetes and Metabolism
  • Pediatrics, Perinatology, and Child Health


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