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Evaluation of terminology used to describe disorders of sex development

Davies, J.H., Knight, E.J., Savage, A., Brown, J. and Malone, P.S. (2011) Evaluation of terminology used to describe disorders of sex development Journal of Pediatric Urology, 7, (4), pp. 412-415. (doi:10.1016/j.jpurol.2010.07.004). (PMID:20708971).

Record type: Article

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.

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More information

e-pub ahead of print date: 14 August 2011
Published date: August 2011
Keywords: disorders of sex development, intersex, nomenclature, taxonomy
Organisations: Human Development & Health

Identifiers

Local EPrints ID: 202447
URI: http://eprints.soton.ac.uk/id/eprint/202447
ISSN: 1477-5131
PURE UUID: a5f6281e-96d3-4f6b-86f1-835d3dfc0233

Catalogue record

Date deposited: 08 Nov 2011 11:13
Last modified: 18 Jul 2017 11:11

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Contributors

Author: J.H. Davies
Author: E.J. Knight
Author: A. Savage
Author: J. Brown
Author: P.S. Malone

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