Disorders of sex development (DSD) are a group of conditions caused by atypical development of chromosomal, gonadal or anatomical sex which pose complex, long-term diagnostic, investigative and management challenges requiring expert teams and close collaboration with families and peer groups. The lack of nationally agreed clinical standards for the management of DSD has been recognised by the British Society of Paediatric Endocrinology and Diabetes, and these are now in development but with limited supporting evidence-based literature, hence the use of Delphi Consensus methodology to develop key principles of management.
Method: Using the DELPHI survey method over a 6 week process, we sought to reach consensus for 14 statements concerning Principles of Management devised by the BSPED DSD specialist interest group (SIG) with peer group review. An online survey was sent to DSD multidisciplinary team (MDT) professionals and support groups across the UK in two rounds (R1 and R2). Each statement had 4 fixed responses and free text comment. Statements reaching 70% agreement met consensus. All free text comments were reviewed. R1 respondents were invited to participate in R2 for amended statements not meeting consensus.
Results: 89 contacts were invited to participate in R1. 70 responses were received with 45 (51%) initial responses and 24 additional responses through survey forwarding by DSD MDTs. 12 (85%) statements reached consensus in R1. In R2, 51 (73%) responses were received for amended statements and consensus was reached on all remaining statements. Particular issues highlighted were timescales to diagnosis and referral due to geographical service distributions, agreement on key members of the DSD MDT and psychology provision and availability of peer reviewed literature for patient information.
Conclusions: The DELPHI process demonstrated a successful and effective method in achieving expert consensus for Principles of Management for DSD, a complex condition with limited evidence-base. Despite geographical service landscapes, standards/principles set through national consensus will drive forward improved patient care and service provision.
On behalf of the British Society of Paediatric Endocrinology and Diabetes (BSPED) DSD Special Interest Group (SIG) and Clinical Committee.
22 - 24 Nov 2017
British Society for Paediatric Endocrinology and Diabetes