Abstract 3214: Planning for the Future of Adult Congenital Heart Disease Patients: From Numbers to Guidelines
Background: The observed prevalence of adults with congenital heart disease has been estimated and measured in the general population. Guidelines have been published as to the number of specialized centers required to serve the adult congenital heart disease (ACHD) population.
Objectives: To determine if published guidelines on the numbers of specialized ACHD centers are sufficient to meet the needs of ACHD patients in the general population.
Methods: Data on the observed prevalence and incidence of CHD was reviewed in adults. These numbers were extrapolated to the US and Canadian adult populations in the year 2000. The 6 largest ACHD centers world-wide were used as models of ideal care. Data published by these centers was reviewed to determine the number of patients followed and the ratio of severe and other forms of CHD. Published guidelines on numbers of ACHD centers needed were then applied to population data. In applying the guidelines to the population numbers it was assumed that ACHD centers would not be expected to follow all ACHD patients but would follow all those with severe CHD in a ratio comparable to ACHD existing centers.
Results: In the year 2000 the numbers obtained empirically in the general population were in line with conservative estimates and correspond to 87,375 adults in Canada and and 847,896 in the US with CHD. Using population data, 80,000 patients in the US and 9,000 patients in Canada were expected to have severe disease. The largest ACHD centers followed a median of 2,850 patients as recorded in 2003 with an approximate 30% of patients having severe CHD. Published guidelines recommend 1 specialized ACHD center per 3 to 10 million population. With a ratio of 1 center for a population of 10 million the total number of patients followed per center is in excess of 10,000 patients. With a ratio of 1 center for a population of 3 million, each center would follow 3,300–3,500 patients. Even with 1 adult CHD center for every 3 million people, the number of patients followed in ACHD centers is only 35,796 in Canada and 317,875 in the US.
Conclusions: Using the parameters common to the largest ACHD centers world-wide as a model, we demonstrate that 1 center for a population of 3 million would insure the care of less than half the total adult CHD population in the US and Canada.