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.