Endocrine Abstracts

Introduction: BSPED standards for the management of infants or adolescents presenting with suspected differences in sex development were developed in 2017, aimed at identifying optimal service requirements to provide best clinical practice and ensure equity of access. They were audited 2019 and reaudited in 2023.

Aim: To document structures of UK DSD care delivery, assess current service provision against benchmarks and share best practice to support improvements and developments of these highly specialised and sensitive services.

Methods: Surveys were distributed via email to clinical leads in all 23 UK centres. Data were collected on a range of information about services across 6 clinical standards. Additionally, clinical leads were requested to distribute a supplementary survey to their MDT members to evaluate continuous professional development activities.

Results: All 23 centres responded to the primary survey and 84 individuals responded to the CPD questionnaire. Improvement was observed in 4 out of 6 clinical standards from 2019 to 2023. The presence of MDTs increased from 18/21 centres in 2019 to 22/23 in 2023. More centres record their patients on registries (2019: 16/21, 2023: 19/23). Specifically, 14/23 record on iDSD and all consent for this. More centres are also involved in QI projects (2019: 10/21, 2023: 13/23,) and research (2019: 14/21, 2023: 17/23). Common barriers to meeting standards throughout centres included limited clinical psychology services, challenges in registry data input, restricted access to radiology services, and variable transition provisions. The successful audit cycle has prompted a recognition of the necessity to refine BSPED clinical standards, especially in defining MDT membership, delineating the roles of key workers and specialist nurses, and specifying inclusion criteria for DSD registries. Furthermore, there exist various opportunities for Quality Improvement Projects (QIPs), such as resource sharing (e.g., guidelines, referral pathways, feedback tools) and development of appropriate transition pathways to adult services.

Conclusions: Despite current pressures within the NHS, there has been significant improvement across clinical standards in DSD MDT service provision. This audit has underscored unmet needs common across centres, with a commitment to tangible future improvements. We would like the thank the DSD special interest group for their collaboration.