ESPE Abstracts (2016) 86 WG1.5

DSD Nomenclature, a Report of the Patients Views in the dsd-LIFE Study

Ute Thyen

Lubeck, Germany

Background: A decade ago the ESPE/LWSPE “Consensus Group on management of intersex conditions” proposed the new term Disorders of Sex Development and its acronym DSD as an umbrella term for congenital conditions in which the development of chromosomal, gonadal, or anatomical sex is atypical. The Consensus Group intended to replace a potentially stigmatizing vocabulary; however, the new nomenclature attracted criticism.

Objective: To determine the views and perspectives of individuals having medical conditions that might be classified as DSD regarding the terminology.

Method: In 2012 the European research project “dsd-LIFE”, funded from the European Union (FP 7) was initiated, implementing the term DSD in its project title. Recruitment took place in Poland, Sweden, Germany, France, United Kingdom and the Netherlands between 2014 and 2015. Inclusion criteria of the study followed a generic definition of DSD following the consensus statement.

Results: In total 1040 individuals participated and 941 responded to the items in the questionnaire related to terminology, including 212 with CAH, 273 with Turner-Syndrom (TS), 188 with Klinefelter-Syndrome (KS), 206 with XY DSD and 62 with other conditions. 29% participants reported that they disagreed with the Disorders of Sex Development, ranging from 38% in CAH, 34% in TS, 32% in KS and 23% in XY-DSD and other conditions.

Discussion: Following the consensus statement the new nomenclature was readily introduced in pediatric care. In the medical profession it appears to improve interprofessional communication. Different from other medical conditions, in DSD individuals so affected are highly sensitive concerning the issue of lebelling and prejudice as aspects of personal integrity and gender identity. Although we found a predominantly positive reception of the term DSD, health care professionals should openly discuss the issue of medical and non-medical terminology and may agree with the patient on a preferred diagnostic label. The label may depend on the context of communication, i.e. health care system, social and working environment, or family and friends.

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