How Many Patients? How Many Doctors?

Abstract

One of the fastest growing fields in medicine is the care of adults with congenital heart disease (adult CHD or ACHD). This is mainly a consequence of much longer survival due to advances in pediatric cardiology, interventional catheterization, cardiac surgery, and intensive care. Fifty years ago we could diagnose most forms of moderate and severe CHD, but some anomalies were untreatable and others had relatively low survival after treatment. Today, in-hospital mortality is low for almost all forms of CHD, and most of the survivors can be expected to reach adult life. In addition, a medical system with greater focus on CHD now detects many lesions such as coarctation of the aorta and atrial septal defects that previously went unnoticed. Patients with ACHD need adequate resources, facilities and manpower to care for them, and we in turn need accurate estimates of how many patients have each type and severity of ACHD in order to plan effectively. These estimates are moving targets, because improvements in preoperative, intraoperative, and postoperative care occur continuously. What was good yesterday may not be adequate today. Articles see pp 2254 and 2264 The classic dilemma in studying this problem is how to obtain accurate data on a large number of patients. Studies based on registries showing the incidence of CHD at birth and mortality from CHD may show the big picture, but the details are inaccurate.1 On the other hand, following a smaller population intensively gives accurate data but runs the risk of being unrepresentative of the population as whole as well as risking excessive stochastic variation, especially for complex anomalies with a low birth incidence. Several attempts have been made to derive these data. A landmark report of Task Force I of the 32nd Bethesda Conference set up by the American College of …