American Heart Journal
Volume 157, Issue 1 , Pages 1-8 , January 2009

Planning the specialized care of adult congenital heart disease patients: from numbers to guidelines; an epidemiologic approach

  • Ariane J. Marelli, MD, FACC

      Affiliations

    • McGill Adult Unit for Congenital Heart Disease Excellence (MAUDE Unit), Montreal, Canada
    • McGill University Health Center Research Institute, Montreal, Canada
    • Corresponding Author InformationReprint requests: Ariane Marelli, MD, FRCP(C), FACC, Associate Professor of Medicine, McGill University, Director, McGill Adult Unit for Congenital Heart Disease (MAUDE unit), McGill University Health Centre, 687 Pine Ave West, Room H4-33, Montreal, Canada H3A 1A1.
    • ,
  • Judith Therrien, MD, FACC

      Affiliations

    • McGill Adult Unit for Congenital Heart Disease Excellence (MAUDE Unit), Montreal, Canada
    • ,
  • Andrew S. Mackie, MD, SM

      Affiliations

    • McGill Adult Unit for Congenital Heart Disease Excellence (MAUDE Unit), Montreal, Canada
    • McGill University Health Center Research Institute, Montreal, Canada
    • ,
  • Raluca Ionescu-Ittu, MSc

      Affiliations

    • McGill Adult Unit for Congenital Heart Disease Excellence (MAUDE Unit), Montreal, Canada
    • McGill University Health Center Research Institute, Montreal, Canada
    • ,
  • Louise Pilote, MD, MPH, PhD

      Affiliations

    • McGill University Health Center Research Institute, Montreal, Canada

Received 11 December 2007 ,Accepted 30 August 2008.

References 

  1. Warnes CA, Liberthson R, Danielson GK, et al. Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol. 2001;37:1170–1175
  2. Webb GD, Williams RG. Care of the adult with congenital heart disease: introduction. J Am Coll Cardiol. 2001;37:1166
  3. Marelli AJ, Mackie AS, Ionescu-Ittu R, et al. Congenital heart disease in the general population: changing prevalence and age distribution. Circulation. 2007;115:163–172
  4. Hoffman JI, Kaplan S. The incidence of congenital heart disease. J Am Coll Cardiol. 2002;39:1890–1900
  5. Hoffman JI, Kaplan S, Liberthson RR. Prevalence of congenital heart disease. Am Heart J. 2004;147:425–439
  6. Therrien J, Warnes C, Daliento L, et al. Canadian Cardiovascular Society Consensus Conference 2001 update: recommendations for the management of adults with congenital heart disease part III. Can J Cardiol. 2001;17:1135–1158
  7. Landzberg MJ, Murphy DJ, Davidson WR, et al. Task force 4: organization of delivery systems for adults with congenital heart disease. J Am Coll Cardiol. 2001;37:1187–1193
  8. Therrien J, Dore A, Gersony W, et al. Canadian Cardiovascular Society Consensus Conference 2001 update: recommendations for the management of adults with congenital heart disease. Part I. Can J Cardiol. 2001;17:940–959
  9. Hennekens CH, Buring JE. Definition and background. In:  Mayrent SL editors. Epidemiology in medicine. Philadelphia: Lippincott William & Wilkins; 1987;p. 3–4
  10. Statistics C. Annual demographic statistics 2004. In:  Division D editors. Annual Demographic Statistics. Vol Catalogue no. 91-213-XIB and 91-213-XPB. Ottawa: Statistics Canada; 2005;
  11. United States Census Bureau . In:  Division P editors. Annual estimates of the population by selected age groups and sex for the United States. Vol NC-EST2004-02:Washington, DC: U.S. Census Bureau; 2004;
  12. In: United Nations Department of Economic and Social Affairs/Population Division. World population prospects: the 2004 revision, vol III. New York: United Nations; 2006;p. 24
  13. Thom T, Haase N, Rosamond W, et al. Heart disease and stroke statistics—2006 update: a report from the American Heart Association Statistics Committee and Stroke Statistics Subcommittee. Circulation. 2006;113:e85–e151
  14. Slieker MG, Uiterwaal CS, Sinaasappel M, et al. Birth prevalence and survival in cystic fibrosis: a national cohort study in the Netherlands. Chest. 2005;128:2309–2315
  15. Gurvitz MZ, Chang RK, Ramos FJ, et al. Variations in adult congenital heart disease training in adult and pediatric cardiology fellowship programs. J Am Coll Cardiol. 2005;46:893–898
  16. Niwa K, Perloff JK, Webb GD, et al. Survey of specialized tertiary care facilities for adults with congenital heart disease. Int J Cardiol. 2004;96:211–216
  17. Association ACH. Adult congenital heart association directory. Available at: http://www.achaheart.org/for_members/clinic_directory.php. Last accessed May 6, 2008.
  18. Network CACH. Centers contact. Available at: http://www.cachnet.org/. Last accessed May 6, 2008.
  19. Mackie AS, Pilote L, Ionescu-Ittu R, et al. Healthcare resource utilization in adults with congenital heart disease: a population-based study. Am J Cardiol. 2007;33:839–843
  20. Gurvitz MZ, Inkelas M, Lee M, et al. Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood. J Am Coll Cardiol. 2007;49:875–882
  21. Gatzoulis MA, Hechter S, Siu SC, et al. Outpatient clinics for adults with congenital heart disease: increasing workload and evolving patterns of referral. Heart. 1999;81:57–61
  22. Reid GJ, Irvine MJ, McCrindle BW, et al. Prevalence and correlates of successful transfer from pediatric to adult health care among a cohort of young adults with complex congenital heart defects. Pediatrics. 2004;113:e197–e205
  23. Perloff JK. Congenital heart disease after childhood: an expanding population. 22nd Bethesda Conference. J Am Coll Cardiol. 1991;18:311–342
  24. Anderson JG. Health services research: framework and review. Health Serv Res. 1973;8:184–199
  25. Williams RG, Pearson GD, Barst RJ, et al. Report of the National Heart, Lung, and Blood Institute Working Group on research in adult congenital heart disease. J Am Coll Cardiol. 2006;47:701–707
  26. Abbott ME. Atlas of congenital cardiac disease. In: New York: American Heart Association; 1936;p. 12–14
  27. Fyler DC. Report of the New England Regional Infant Cardiac Program. Pediatrics. 1980;65:375–461
  28. Srinathan SK, Bonser RS, Sethia B, et al. Changing practice of cardiac surgery in adult patients with congenital heart disease. Heart. 2005;91:207–212
  29. Therrien J, Siu SC, McLaughlin PR, et al. Pulmonary valve replacement in adults late after repair of tetralogy of fallot: are we operating too late?. J Am Coll Cardiol. 2000;36:1670–1675
  30. Santoro G, Pascotto M, Caputo S, et al. Similar cardiac remodelling after transcatheter atrial septal defect closure in children and young adults. Heart. 2006;92:958–962
  31. Sutherland J. Mutual friends: Charles Dickens and Great Ormond Street Children's Hospital. Med Hist. 1991;35:467
  32. Perloff J. Ventricular septal defect. In: The Clinical Recognition of Congenital Heart Disease. 4th Ed ed. Philadelphia: W.B. Saunders; 1994;p. 396–440
  33. Jenkins KJ, Gauvreau K. Center-specific differences in mortality: preliminary analyses using the Risk Adjustment in Congenital Heart Surgery (RACHS-1) method. J Thorac Cardiovasc Surg. 2002;124:97–104

 Doctor Marelli is supported by the Heart and Stroke Foundation of Canada (Montreal, Québec, Canada). Doctor Mackie was supported by the Fonds de la Recherche en Santé du Québec (Québec City, Québec, Canada). Doctor Pilote is supported by the Canadian Institutes of Health Research (Ottawa, Ontario, Canada) and is a James McGill Professor of Medicine at McGill University.

PII: S0002-8703(08)00792-8

doi: 10.1016/j.ahj.2008.08.029

American Heart Journal
Volume 157, Issue 1 , Pages 1-8 , January 2009

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