Summary
Introduction
Although now commonly used in medicine, the updated “disorders of sex development”
(DSD) nomenclature formally introduced in 2006 has never been universally accepted
by members of the affected community, particularly advocacy groups. Use of this nomenclature
by medical professionals may unintentionally negatively affect access to healthcare
and research for individuals with DSD conditions.
Objective
Among individuals affected by various DSD diagnoses, this study sought to (1) evaluate
attitudes towards potentially controversial DSD terminology, (2) determine potential
impact of terminology on how affected individuals access healthcare, and (3) explore
alternate terms.
Study design
A web-based survey was developed in collaboration with the AIS-DSDSG (Androgen Insensitivity
Syndrome–DSD Support Group) leadership. AIS-DSDSG members (caregivers and affected
individuals) were surveyed about attitudes towards DSD, potential impact on healthcare
utilization, and alternate terms. A qualitative analysis of reasons for using/avoiding
specific terms was performed.
Results
Surveys were completed by 202 out of 580 (35%) AIS-DSDSG members (61% affected, 39%
caregivers; 16% non-gender binary; age range of affected individuals 0–86 years).
Only 24% use disorder of sex development to describe themselves/their child. A majority
(69%) had a negative emotional experience because of clinical use of nomenclature;
81% changed their care because of it. Preferred and non-preferred terms for clinical
care and research are illustrated in the figure. Preferred diagnostic terms were intersex,
variation in sex development, and difference of sex development (55%, 52%, and 50%
liked/strongly liked, respectively). Disorder of sex development was not preferred
(17% liked/strongly liked). About one-third reported that they would not attend a
clinic named the Disorder of Sex Development Clinic. Overall, 81% provided qualitative
comments; flexible terminology use was a key theme.
Discussion
These study findings are consistent with previous studies that demonstrated negative
perceptions of DSD nomenclature. This study adds to previous findings by surveying
a large group of affected individuals with a range of diagnoses, and by exploring
emotional impact and healthcare utilization. Several possible alternative terms were
also defined. The study was limited by inclusion of only members of AIS-DSDSG, a convenience
sample where complete AIS is over-represented, and whose views may not represent the
opinion of all individuals with DSD conditions.
Conclusions
Graphical AbstractRatings of terms used in clinical care and to describe research studies.
Keywords
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Article info
Publication history
Published online: May 08, 2017
Accepted:
March 21,
2017
Received:
January 5,
2017
Identification
Copyright
© 2017 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
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- Commentary to “Attitudes towards ‘disorders of sex development’ nomenclature among affected”Journal of Pediatric UrologyVol. 13Issue 6
