SFEBES2009 Poster Presentations Clinical practice/governance and case reports (87 abstracts)
Are young people with congenital adrenal hyperplasia engaging with adult endocrine care?
H Gleeson 1 , J Jones 1 , E O’Shea 1 , R Amin 1 , L Patel 1 , I Banerjee 1 , C Hall 1 , F Wu 2 , D Ray 2 , J Davis 2 & P Clayton 1
1Royal Manchester Children's Hospital, Manchester, UK; 2Manchester Royal Infirmary, Manchester, UK.
Objective: To evaluate whether patients with congenital adrenal hyperplasia (CAH) have been successfully transitioned to adult endocrine care.
Methods: All patients with CAH who had attended the paediatric adrenal clinic at RMCH and were currently between 16 and 30 years of age were identified. Current status of adult endocrine care was recorded.
Results: Sixty-eight patients were identified. There was inadequate information on 16 patients including two patients who had died (cause as yet unknown). Of 5/52 (10%) had been lost from the paediatric service.
Of 12/47 (26%) were referred to adult services in their local area. A letter confirming attendance was received from the adult endocrinologist in 50%. Of 35/47 (74%) were referred to the tertiary adult services with close links to the paediatric service. Fifty-three new appointments had been offered to these patients by the adult service including re-referral by their GP. Non-attendance rates were significantly higher in the third year of clinic follow-up (43%) compared with the previous five years spanning paediatric and adult services (P<0.001). Of these 35 patients, 21 were still attending (A) and 14 (33%) had been lost to follow up (L). Comparing the two groups there were no significant differences in gender or age or in the proportion that had attended the young person’s clinic (attended by both paediatric and adult endocrinologists) (48 (A) vs 64% (L)).
Conclusion: Following transfer to adult services a large proportion of patients with CAH are lost to follow up placing them at increased risk of morbidity. The risk appears higher in the third year after transfer when non-attendance rates increase. Transition services need to be improved and expanded to provide support during this time. Recognition must also be given to the role that primary care could provide in monitoring their patient’s ongoing contact with adult endocrine services.
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Endocrine Abstracts
ISSN 1470-3947 (print) | ISSN 1479-6848 (online)
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