Data published by the Central Cardiac Audit Database show that between April 2000 and January 2001, just over 2,300 operations were performed in the UK’s 14 specialist paediatric congenital heart disease units. Overall the mortality rate from these operations was 5.1%. During the same nine-month period around 550 interventional cardiac catheterisation procedures were also carried out.
From these figures we estimate around 3,100 operations and 725 interventional cardiac catheterisations are performed each year on babies and children with congenital heart disease.
Trend data suggest that the number of operations performed on children with congenital heart disease increased by around 15% between the late 1970’s and the late 1990’s. Over the same period mortality from these operations more than halved.
No national data on procedures for grown-up congenital heart disease (GUCH) are available. However, unpublished data from a specialist GUCH unit in London which cares for over 2,400 patients, show that between 1999 and 2002, 342 procedures were carried out, of which just under one-third were transcatheter rather than surgical procedures1.
Further data from the patient register at the Adult Congenital Heart Disease clinic in Birmingham suggest around three-quarters of adults with complex congenital heart disease have had surgery to treat their congenital heart defect. Around one quarter are treated with drugs, with no clinical need for surgery. Of those who have been treated by surgery, further surgery is likely to be needed in two-thirds of cases, with only one-third of cases categorised as surgically “cured”. A small minority, less than one in twenty, have more serious conditions, which require heart transplantation.
1. These data are from the congenital section of the UK Cardiac Surgical Register, collected by the Society of Cardiothoracic Surgeons of Great Britain and Ireland. This section of the register was abandoned in 2000 due to growing concerns over data quality and the inability of the register to reflect practice as new techniques evolved . The congenital section of the UK Cardiac Surgical Register was replaced by the Central Cardiac Audit Database Project (CCAD), which is a combined cardiological and cardiac surgical database managed by the NHS Information Authority. The first CCAD report on procedures for congenital heart disease was published in 2001. Because of differences in methodology, the data in the tables below are not strictly comparable.
