Specialist services and transitional care in paediatric endocrinology in the UK and Ireland

Summary

Objective  To assess current provision of specialist and transitional paediatric endocrine services in the UK and Ireland.

Design  A questionnaire was sent to paediatric endocrinologists requesting details of patients receiving GH and also details of specialist and transitional services.

Results  Of 72 questionnaires received, 56 [21 from historical growth centres (group 1), 10 from other teaching hospitals (group 2) and 25 from district general hospitals (DGHs) (group 3)] were analysed. A total of 4758 children [3709 (78%) in group 1] currently receive GH in the UK. Fifty-six per cent of units (90% in groups 1 and 2) provide transfer clinics: transition (N = 27), adolescent (10), young adult (11) and adult (3). In 90% of the paediatric units, the paediatric and adult endocrinologist sit together, and 58% of clinics are held in the paediatric unit. Clinic entry is based on final height (33%), age (51%), both (14%), and other (2%). Fifty-five per cent of units transfer all GH-treated patients, the remainder transfer only those non-GH-deficient on retesting. Eighty per cent retest prior to transfer using the insulin tolerance test (ITT) [N = 27 (including three DGHs)], glucagon (22), arginine (4), clonidine (2) and other (5). Apart from intersex clinics (13), there are few specialist clinics for other paediatric endocrine patients, including only three for Turner syndrome (TS). Adult TS transfer is to multidisciplinary clinics (N = 11), adult endocrinology (27), gynaecology (14), cardiology (5) and general practitioner (GP) (1).

Conclusions  We have confirmed more GH-treated patients than before; many remain within historic growth centres. Although in the UK and Ireland transition services are established in many larger units, current guidelines are not always adhered to. Provision of specialist paediatric endocrine clinics for all groups remains variable.