Collaborative care for adults with congenital heart disease

The number of adults who have survived with congenital heart disease is increasing rapidly. Although prevalence studies have not been performed, estimates of expected numbers of people reaching adulthood with congenital heart disease (CHD) can now be made because birth prevalence has been studied and mortality rates have begun to stabilize. Birth prevalence for all forms of congenital heart disease detected in the first year of life is estimated at 8.1 per thousand live births on the basis of data from the Centers for Disease Control1; estimates for disease of sufficient severity to result in a catheterization, surgery, or death in the first year of life are 2.3 per thousand, using population-based data derived from the Pediatric Cardiac Care Consortium.2 In 1990, the National Center for Health Statistics reported the number of US live births to be 4 158 212.3 Age-specific mortality data were obtained from the complete life table for the US population4 and from population-based death rates during hospital admission using data from 6 states in 1992. Estimates of numbers of individuals reaching adulthood born in 1990 with congenital heart disease of sufficient severity to be diagnosed or treated during the first year of life are shown in the Figure. Disregarding all patients born before 1990 and those not diagnosed in the first year and assuming stable mortality in early adulthood, by 2020, nearly 760 000 individuals will have CHD, with 200 000 in the more severe subgroup. Number of children born after 1990 with congenital heart disease estimated to reach adulthood. □ indicates diagnosed in the first year of life; ⋄, undergoing catheterization or surgery in the first year of life. This striking increase in the estimated number of patients with congenital heart disease who will require competent care within the …