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(Circulation. 2002;105:2318.)
© 2002 American Heart Association, Inc.

Current Perspective

Collaborative Care for Adults With Congenital Heart Disease

Catherine L. Webb, MD; Kathy J. Jenkins, MD; Peter P. Karpawich, MD; Ann F. Bolger, MD; Richard M. Donner, MD; Hugh D. Allen, MD; Robyn J. Barst, MD, and the Congenital Cardiac Defects Committee of the American Heart Association Section on Cardiovascular Disease in the Young

From the Division of Pediatric Cardiology, the Feinberg Medical School, Northwestern University, Chicago, Ill (C.L.W.); Department of Pediatric Cardiology, Harvard University, Boston, Mass (K.J.J.); Division of Pediatric Cardiology, Wayne State University, Detroit, Mich (P.P.K.); Division of Cardiology, University of California, San Francisco (A.F.B.); Division of Pediatric Cardiology, Children’s Hospital of Philadelphia, Philadelphia, Pa (R.M.D.); Division of Pediatric Cardiology, Ohio State University, Columbus (H.D.A.); and Division of Pediatric Cardiology, Columbia University College of Physicians and Surgeons, New York, NY (R.J.B.).

Correspondence to Robyn J. Barst, MD, Professor of Pediatrics, Division of Pediatric Cardiology, Columbia University College of Physicians and Surgeons, 3959 Broadway, BHN 2-255, New York, NY 10032. E-mail rjb3@columbia.edu

Key Words: heart defects, congenital • survival • aging

	Introduction

 
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.

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