title: Challenges of disorders of sex development: diverse perceptions across stakeholders.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors: Urological Institute of Northeastern New York and the Albany Medical College, Albany, NY 12208, USA. bkogan@communitycare.com
authors: Barry A
authors: BA
authors: Kogan
authors: Melissa
authors: M
authors: Gardner
authors: Adrianne N
authors: AN
authors: Alpern
authors: Laura M
authors: LM
authors: Cohen
authors: Mary Beth
authors: MB
authors: Grimley
authors: Alexandra L
authors: AL
authors: Quittner
authors: David E
authors: DE
authors: Sandberg
mesh_terms: D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D012734:Disorders of Sex Development / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy*; D005260:Female; D006304:Health Status; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D033183:Interdisciplinary Communication; D008297:Male; D010290:Parents; D018802:Patient-Centered Care; D010465:Perception / Q000502:physiology*; D011368:Professional-Family Relations; D011788:Quality of Life