The challenge of delivering endocrine care and successful transition to adult services in adolescents with congenital adrenal hyperplasia: experience in a single centre over 18 years

BACKGROUND: Congenital adrenal hyperplasia (CAH) has implications throughout a patient's life. The challenges of organizing transition from paediatric to adult care in endocrinology are recognized. OBJECTIVE: To evaluate whether young people with CAH have been successfully transitioned from paediatric care to specialist adult services and the influence of the introduction of a Young Person Clinic (YPC) where the young person is introduced to the adult endocrinologist. DESIGN, PATIENTS AND MEASUREMENTS: Patients aged 16+ years with CAH who had attended the adrenal clinic at Royal Manchester Children's Hospital between 1992 and 2009 were identified. Clinical information, attendance data in paediatric and adult services were obtained from patient records and the electronic appointment system. RESULTS: A total of 61 patients (27 men) were identified. Thirty-six patients were referred to specialist adult services from the paediatric service; eighteen of these (50%) were lost to follow-up (two were never offered an appointment). Only 53% of the whole group attended their first new and subsequent second appointment (i.e. good early attenders). There was no difference in engagement with adult services in those who transitioned through the YPC. Good early attenders were less likely to get lost to follow-up compared with poor early attenders (11-33% lost to follow-up compared with 63-71%). CONCLUSIONS: Half of all young people with CAH referred to specialist adult services are no longer attending. Introducing the adult endocrinologist prior to transfer had no positive effect on engagement with adult services. Attendance at the first two appointments in the adult services should be seen as an indicator of 'reasonable' engagement.