Evaluation of terminology used to describe disorders of sex development

Abstract 

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 ‘disorders 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 the success of the new terminology.

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 an affected child considered the new term to improve their understanding of their child’s condition (83.3%), and to aid explanation by parent to affected child (82.4%) and to wider family and friends (84.2%). 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 description ‘disorder of sex development’ may be helpful to parents at the time when it is not possible to assign gender, after which aetiologically based diagnoses should be used where possible.

Keywords: Disorders of sex development, Intersex, Nomenclature, Taxonomy