Attitudes towards "disorders of sex development" nomenclature among affected individuals

Johnson, E. K.; Rosoklija, I.; Finlayson, C.; Chen, D.; Yerkes, E. B.; Madonna, M. B.; Holl, J. L.; Baratz, A. B.; Davis, G.; Cheng, E. Y.

J Pediatr Urol. 2017 May 27; 13(6):608.e1-608.e8

Abstract

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: A group of affected individuals and parents have negative views about the DSD terminology commonly used by medical professionals. Use of certain terms may affect the choice of healthcare provider/institution. Evaluation of DSD terminology in other affected individuals, and re-evaluation of current nomenclature, in collaboration with advocates, is needed.

Read More on PubMed