Article Text

WHAT HAPPENS TO CHILDREN WHO GROW UP WITH CONGENITAL HEART DISEASE?
  1. A Al-Sabbagh1,
  2. W Kelsall1
  1. 1Paediatric Department, Addenbrooke’s Hospital, Cambridge, UK

Abstract

Background Many paediatricians will have experience of looking after children with congenital heart disease (CHD) in clinics with visiting paediatric cardiologists. As these children grow up other issues become important including the need for further surgery, employment, insurance, contraception, and pregnancy advise. These are outside the experience of most paediatricians. Clear recommendations have been developed for the management of grown-up congenital heart (GUCH) disease. In this institution patients were offered a choice for long term follow-up: specialist GUCH service, local cardiologist with interest in GUCH or local adult cardiologist. The aim of this study was to review the on-going care of patients discharged from paediatric cardiology (PC) services.

Methods Patients were identified from the local PC database. A retrospective case note review performed for patients discharged before 31st of December 2003.

Results 99 patients identified. 98 (99%) are alive. 9 (9%) patients discharged to GP. 49 (49%) seen in specialist GUCH centres, of these 45 seen in the unit affiliated to the centre where surgery was originally performed. 25 (25%) seen by adult cardiologists with interest in GUCH. 10 (10%) referred to local adult cardiologists. 6 (6%) patients lost to follow-up. A total 74 (82%) of 90 patients were seen in either a GUCH centre or by cardiologists with expertise in GUCH.

Conclusion This study suggests that the majority of patients with CHD receive follow-up by cardiologists trained in GUCH. A small number of patients were lost at the time of transfer adult services. The development of transitional clinics would smooth this process.

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