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

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