期刊
HORMONE RESEARCH IN PAEDIATRICS
卷 78, 期 1, 页码 40-46出版社
KARGER
DOI: 10.1159/000339863
关键词
Disorders of sex development; Health-related quality of life; Interdisciplinary teams; Pediatric urology; Pediatric endocrinology; Mental health professionals
资金
- Eunice Kennedy Shriver National Institute of Child Health and Human Development [R21HD044398, R01HD053637]
- Capital Region Medical Research Foundation
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 (C) 2012 S. Karger AG, Basel
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