Consequences of the Chicago Consensus on Disorders of Sex Development (DSD): Current practices in Europe

Vickie Pasterski ^1*, Philippa Prentice ² and Ieuan Hughes ¹

¹ University of Cambridge/Addenbrooke's Hospital, United Kingdom
² Whittington Hospital, London, United Kingdom

^* To whom correspondence should be addressed. E-mail: vp265{at}medschl.cam.ac.uk.

Accepted 30 August 2009

Abstract

Objective: To assess clinical management of disorders of sex development (DSD) subsequent to recommendations issued in the 2006 Consensus Statement.

Design: Online questionnaire and audit of DSD literature.

Subjects: Paediatric endocrinologists from 60 medical centres representing 23 European countries.

Main outcome measures: Clinic activity, multidisciplinary team composition, provision of psychological support services, incidence of feminising clitoroplasty, and use of diagnostic algorithms and newly proposed nomenclature.

Analyses: Data are reported in terms of percentages with respect to implementation of recommendations outlined in the Consensus Statement. X² was used to analyse changes in nomenclature reported in the literature.

Results: Sixty centres reported on management of an average of 97.3 (range, 8 - 374) patients per year, totalling approximately 6000. Fifty-seven percent of centres regularly included the services of recommended paediatric subspecialists: paediatric endocrinologist, paediatric surgeon/urologist, plastic surgeon, paediatric psychiatrist/psychologist, gynaecologist, clinical geneticist, histopathologist, and neonatologist. Additionally, 95% of centres reported offering primary psychological support services and 65% of centres reported using a diagnostic algorithm. Fifty-two percent and 44.8% of centres reported having performed fewer or similar numbers, respectively, of clitoroplasties than in previous years. Finally, 100% of respondents reported using the newly proposed terminology. Likewise, an audit of the literature reflected a recent reduction in usage of the non-preferred historical terminology.

Conclusions: There is evidence that the majority of European DSD centres have implemented policies and procedures in accordance with the recommendations issued by the 2006 Consensus Group. These findings represent a change in practice with the collaborative goal of improved patient care.