Background: Congenital adrenal hyperplasia (CAH) is an autosomal recessive disorder characterised by impaired cortisol synthesis. In the CaHASE study, a surprisingly low number of cases were identified as attending adult endocrine clinics. It has been suggested that patients with CAH are lost to follow up around the time of transition to adult services.
In our service, there is a transition clinic that has a lead paediatric and adult Consultant who attend all clinics. The first clinic in the adult hospital is attended by both adult and paediatric teams. There is specialist nurse support and all patients are offered transfer to a single adult centre. We hypothesised that this structure would improve clinic attendance.
Methods: Electronic records of patients with CAH who underwent transition to the adult service between 2010 and 2015 were examined. Patients seen within 1 year of transition were considered as having transferred. Those not seen in the last 18 months were considered to no longer attend the clinic.
Results: Fourteen patients were identified (nine female). Of those, 11 (78%) continue to attend the clinic in the adult sector (range 3 months3 years post transition). Of those with no ongoing follow up, one has left the area and the status of two is unknown. Of those two, both missed their initial adult clinic appointment.
Conclusion: For patients with CAH, clinic attendance in the early years following transition in Glasgow appears to be reasonably good, and better than reported in some other centres. This may be due to the design of the clinic. Clinic non-attendance around transition may predict later difficulties with follow up. Future studies might attempt to identify factors that determine clinic attendance and service engagement in patients outwith the transition period.