Patient-Centered Care: Caring for Families Affected by Disorders of Sex Development
Disorders of sex development (DSD) are “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical” . The conditions subsumed under this superordinate term are individually rare but, in the aggregate, have an estimated incidence of 0.5–1% . Clinical management of DSD (formerly referred to as “intersex”) had stood largely unchallenged from the mid-1950s until the early 1990s. At that time, criticism of various aspects of clinical practice in DSD emerged from several perspectives , perhaps most notably from affected adults who expressed dissatisfaction with their treatment [4, 5]. A confluence of advances in the diagnosis of DSD and appraisal of surgical and psychological outcomes has led to a reexamination of assumptions and clinical practice.
KeywordsConsensus Statement Congenital Adrenal Hyperplasia Turner Syndrome Interdisciplinary Team Affected Person
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