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 Quittner, David E. Sandberg

Research output: Contribution to journalArticle

15 Citations (Scopus)

Abstract

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
Pages (from-to)40-46
Number of pages7
JournalHormone Research in Paediatrics
Volume78
Issue number1
DOIs
StatePublished - Aug 1 2012

Fingerprint

Disorders of Sex Development
Pediatrics
Sexual Development
Patient Care Team
Body Image
Family Planning Services
Focus Groups
Counseling
Mental Health
Parents
Communication
Quality of Life
Newborn Infant
Interviews

Keywords

  • 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

Cite this

Kogan, B. A., Gardner, M., Alpern, A. N., Cohen, L. M., Grimley, M. B., Quittner, A., & Sandberg, D. E. (2012). Challenges of disorders of sex development: Diverse perceptions across stakeholders. Hormone Research in Paediatrics, 78(1), 40-46. https://doi.org/10.1159/000339863

Challenges of disorders of sex development : Diverse perceptions across stakeholders. / Kogan, Barry A.; Gardner, Melissa; Alpern, Adrianne N.; Cohen, Laura M.; Grimley, Mary Beth; Quittner, Alexandra; Sandberg, David E.

In: Hormone Research in Paediatrics, Vol. 78, No. 1, 01.08.2012, p. 40-46.

Research output: Contribution to journalArticle

Kogan, BA, Gardner, M, Alpern, AN, Cohen, LM, Grimley, MB, Quittner, A & Sandberg, DE 2012, 'Challenges of disorders of sex development: Diverse perceptions across stakeholders', Hormone Research in Paediatrics, vol. 78, no. 1, pp. 40-46. https://doi.org/10.1159/000339863
Kogan BA, Gardner M, Alpern AN, Cohen LM, Grimley MB, Quittner A et al. Challenges of disorders of sex development: Diverse perceptions across stakeholders. Hormone Research in Paediatrics. 2012 Aug 1;78(1):40-46. https://doi.org/10.1159/000339863
Kogan, Barry A. ; Gardner, Melissa ; Alpern, Adrianne N. ; Cohen, Laura M. ; Grimley, Mary Beth ; Quittner, Alexandra ; Sandberg, David E. / Challenges of disorders of sex development : Diverse perceptions across stakeholders. In: Hormone Research in Paediatrics. 2012 ; Vol. 78, No. 1. pp. 40-46.
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