The remarkable improvement in survival of patients with congenital heart disease has led to a
growing number of adult patients. In particular, patients with more complex disease showed
favorable outcomes in the last decades. In addition, some defects (e.g. atrial septal defect,
Ebstein’s anomaly, and congenitally corrected transposition of the great arteries) may be
diagnosed for the first time in adult life. A wide range of birth prevalence estimates has been
reported, and therefore complicates the evaluation of the number of patients with congenital
heart disease. In the Netherlands, every year approximately 1400 children are born with a
congenital heart defect. At present, it is estimated that there are over 40.000 adults with congenital
heart disease and this group is annually growing with ~5%. Besides, there are about
25.000 children with a congenital heart defect. The 32nd Bethesda Conference report in 20006
estimated that there were ~2800 adults with congenital heart disease per 1 million population
in the United States, with more than half of them having moderate or high complexity of their
defect. The reported birth prevalence of congenital heart disease varied from four to fifty per
1000 live births.
The prognosis of patients with congenital heart disease has increased over the last decades,
because of improved surgical techniques and pediatric care. Now that operative mortality of
the early repair has fallen to low levels, attention has turned to improvement of longer-term
outcomes and preservation of cardiac function.
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