Objective: The terminology used to describe abnormalities of sex determination and sex differentiation was revised in 2006. It was anticipated that new terms, such as disorder of sex development (DSD), would improve communication between health professionals, aid parental understanding and be acceptable to affected individuals. The purpose of this study was to evaluate whether the new terminology has been an improvement compared to previous nomenclature.
Subjects and methods: Using a questionnaire, we evaluated the acceptance of these new terms by parents of children with a DSD (n=19), health professionals (n=15) and parents of unaffected children (n=25).
Results: Comparing the term DSD to intersex, overall 86.4% of participants preferred the term DSD, and parents of a child with a DSD had an even higher preference (94.7%). Parents of a child affected by a DSD considered the new term DSD to improve their understanding of their childs condition (83.3% agree), aided explanation from a parent to an affected child (82.4% agree) and to wider family and friends (84.2% agree). Health professionals preferred the genotype-based terms, whereas parents considered these terms confusing. Overall 59.3% of participants agreed DSD was an acceptable new term.
Conclusions: There was broad support for the new terminology by parents and health professionals. The label disorder of sex development may be helpful to parents at the time when it is not possible to assign gender, after which aetiological-based diagnoses should be used where possible.
03 - 05 Nov 2010
British Society for Paediatric Endocrinology and Diabetes