Endocrine Abstracts

Background: Turner syndrome (TS) is a complex condition requiring lifelong multidisciplinary care. International guidelines recommend structured clinic models and coordinated transition, yet service delivery across the UK has not previously been evaluated at a national level.

Objectives: To assess current UK paediatric TS service provision, including variation in clinic configuration, multidisciplinary team (MDT) composition, adherence to consensus guidelines, and use of clinical pathways and registries.

Methods: An electronic survey was distributed to all UK tertiary paediatric endocrine centres and completed between June 2023 and February 2024. The survey captured data on consultant staffing, patient numbers, clinic structure (dedicated vs general endocrine), MDT membership, follow-up frequency by age group, local versus regional service differences, transition pathways, and awareness and use of the International TS Consensus Guidelines, the i-TS Registry, and Turner Syndrome Support Society resources.

Results: Twenty centres responded. Six of 20 had a dedicated TS clinic; these tended to have more patients and greater consultant capacity. Most MDTs were largely limited to paediatric endocrinologists and clinical nurse specialists, with infrequent access to psychology, gynaecology, and dietetics. Centres without dedicated clinics often cited limited staffing or low patient numbers. Outreach patients living away from the tertiary centre may be seen less often and with reduced specialist input. Most centres saw patients twice a year but there was variation, with some increasing frequency during late childhood and adolescence. Transition models varied: 9 centres had a TS-specific pathway, 9 used a general endocrine pathway and 2 reported no transition pathway. All centres were aware of the international TS Consensus Guidelines and routinely informed families of the Turner Syndrome Support Society. Most centres were aware of the i-TS Registry: 5 were already participating and 11 have plans to.

Conclusion: This national survey highlights the variation in paediatric TS care across the UK. Smaller centres are less likely to have dedicated clinics and more limited consultant and MDT resources. Transition services are inconsistent, and registry participation is limited. While awareness of best practice is widespread, further support is needed to ensure equitable care and improve service alignment with international standards.