Consequences of the Chicago consensus on disorders of sex development (DSD): Current practices in Europe

摘要

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. Setting: Invitation to complete a 28-item online questionnaire and a 12-item follow-up questionnaire, both assessing current clinic statistics and clinical management of DSD. Participants: 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. χ 2 was used to analyse changes in nomenclature reported in the literature. Results: 60 centres reported on management of an average of 97.3 (range 8-374) patients per year, totalling approximately 6000. The mean number of new referrals in the previous year was 23.27 (range 8-100). 57% 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; 35% reported providing these and additional services of endocrine and surgical nurses, a social worker and a medical ethicist. Additionally, 95% of centres reported offering primary psychological support services (either child psychiatrist or psychologist). 65% of centres reported using a diagnostic algorithm, and 83.3% supported the development of a standardised algorithm. 52% and 44.8% of centres reported having performed fewer or similar numbers, respectively, of clitoroplasties than in previous years and only 3.4% reported an increase. 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.