Service users' experiences of obtaining and giving information about disorders of sex development.

摘要: Please cite this paper as: Liao L, Green H, Creighton S, Crouch N, Conway G. Service users’ experiences of obtaining and giving information about disorders sex development. BJOG 2010;117:193–199. Objective  To quantify participants’ development (DSD). Design  Cross-sectional survey study that asked people their current past relating to DSD disclosure. Setting  A large tertiary referral centre for management in the UK. Population  One hundred 126 with a confirmed diagnosis who were invited participate formed usable sample. Methods  All attended clinic follow-up during period members patient support group whose annual meeting fell within complete Middlesex Communication Survey. Main outcome measures  The Survey. Results  Younger participants more likely report having been appropriately informed than older people. Nearly half former had fully by age 15 years, compared 0% group. In terms sharing, mothers most be person whom participant shared (almost/all) (74%), followed partners (71%). Information genital surgery, presence testes clitoral anomalies least aspects have unambiguously even person. Conclusions  Our results suggest difficulties from care providers common, communication has improved younger participants. also many continue struggle confiding, those closest them, diagnosis. Care protocol needs centralise psychological adaptation, which should primary focus future research.