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Horm Res Paediatr. 2012;78(1):40-6. doi: 10.1159/000339863. Epub 2012 Jul 20.

Challenges of disorders of sex development: diverse perceptions across stakeholders.

Author information

  • 1Urological Institute of Northeastern New York and the Albany Medical College, Albany, NY 12208, USA. bkogan@communitycare.com

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.

Copyright © 2012 S. Karger AG, Basel.

PMID:
22832323
[PubMed - indexed for MEDLINE]
PMCID:
PMC3478759
Free PMC Article
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