The precise prevalence of congenital heart malformations in the adult population is unknown. However, estimates can be made of the current population of adults with congenital heart disease in the UK, combining the known birth rate and published incidence and survival rates.

The British Cardiac Society Working Party on grown-up congenital heart disease (GUCH) recently conducted such an analysis. It was estimated that in 2000 there were just under 150,000 adults with congenital heart disease in the UK. Of these, around 11,500 had the more complex forms of the disease, requiring life-long expert supervision and intervention.

The Working Party further estimated that by the year 2010 there would be over 185,000 adults in the UK living with congenital heart disease (over 17,000 with the complex forms), a rise of around 25% in simple and 50% in complex conditions since 2000.

An analysis based on data from the Northern Region Paediatric Database predicted an even greater growth in the numbers of adults with congenital heart disease over the next decade. This estimates there will be an extra 1,600 adults per year in the UK, living with moderate and complex forms of congenital heart disease and needing long term follow up care.