Service users’ experiences of obtaining and giving information about disorders of sex development
Article first published online: 20 OCT 2009
© 2009 The Authors Journal compilation © RCOG 2009 BJOG An International Journal of Obstetrics and Gynaecology
BJOG: An International Journal of Obstetrics & Gynaecology
Special Issue: The gynaecological and reproductive health problems of puberty and adolescence
Volume 117, Issue 2, pages 193–199, January 2010
How to Cite
Liao, L.-M., Green, H., Creighton, S., Crouch, N. and Conway, G. (2010), Service users’ experiences of obtaining and giving information about disorders of sex development. BJOG: An International Journal of Obstetrics & Gynaecology, 117: 193–199. doi: 10.1111/j.1471-0528.2009.02385.x
- Issue published online: 9 DEC 2009
- Article first published online: 20 OCT 2009
- Accepted 12 August 2009. Published Online 20 October 2009.
- Ambiguous genitalia;
- disorders of sex development;
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 of sex development. BJOG 2010;117:193–199.
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.