Loss to follow-up of adults with repaired congenital heart disease

The development of cardiopulmonary bypass 60 years ago was spurred on by the need for surgical repair of congenital heart disease.1 Early operations concentrated on common malformations that were mostly repaired after infancy. Most patients undergoing surgery were children and were cared for by paediatric cardiologists. When they became adults there was, for many years, no procedure for continuing long-term care, and only more recently has adult congenital cardiology become a well-defined subspeciality.

Surgical mortality in the early days was high but since the 1960s most patients have survived long term. It is estimated that survival to adulthood now exceeds 90%,2 and by the year 2000 the number of adults with cardiovascular malformations exceeded the number of children.3

Although repair of some malformations (such as ventricular septal defect, atrial septal defect and persistent ductus arteriosus) is mostly curative, so-called ‘complete repair’ or ‘total correction’ of many others is not. These include aortic valve stenosis, pulmonary valve stenosis, coarctation of the aorta, tetralogy of Fallot and transposition of the great arteries, as well as more complex malformations. It is now recognised that patients have many late problems that require assessment and treatment.4 Because of this one would expect the long-term outcome to be better in patients under the care of a specialist, and failure to continue follow-up to lead to a poorer outcome.5

Mackie et al5 investigated a cohort of children born in Quebec in 1983 and diagnosed under the age of 6 years who were still alive at the age of 25 years.6 Twenty-eight per cent were lost to follow up by 6–12 years, another 19% by 13–17 years and another 15% by 18–22 years, so that by adult life only 39% of the total cohort was still under specialist review. Many had …