Pediatric Cardiology

, Volume 31, Issue 4, pp 511–514 | Cite as

Care of the Adult Congenital Heart Disease Patient in the United States: A Summary of the Current System

  • Manisha S. Patel
  • Brian E. KogonEmail author
Original Article


With improvements in care, there has been exponential growth in the population of adult congenital heart disease (ACHD) patients. We sought to assess the availability of specialized ACHD care in the United States. We analyzed the Adult Congenital Heart Association’s ACHD clinic directory for information on patient volume, provider training, and other characteristics. The information is self-reported and unverified. The ACHD directory included 72 programs in the United States. Across programs, the majority of patients (33%) seen were between 21 and 30 years old. Program directors had between 2 and 50 years (median 15) of ACHD experience and had dedicated between 10 and 100% (median 30%) of their clinical time to ACHD. There were 2,800 ACHD operations performed per year, ranging from 0 to 230 (median 28) per program. There were between 0 and 5 cardiac surgeons (median 2) involved per program. Each surgeon averaged 20 ACHD operations per year. The growing ACHD population is a largely underserved group. Few programs in the United States provide specialized care, and this care is variably conducted within pediatric and/or adult facilities. These data should serve as a stimulus to improving accessibility of services for this vulnerable population.


Adult congenital heart disease Congenital heart surgery Health services Underserved population 



We thank Michael McConnell, Wendy Book, and the clinic staff at the Emory Adult Congenital Heart Center. We also thank the Sibley Heart Center, Children’s Healthcare of Atlanta, and Emory University for their continued support. Finally, we thank the ACHA for their publicly accessible database and continued advocacy for ACHD patients.


  1. 1.
    Adult Congenital Heart Association (2009) Vision 2020 forum and clinic directory. Available at: Accessed 1 July 2009
  2. 2.
    Calabro R, Sarubbi B, D’Alto M, Russo MG (2007) Organization of care for adults with congenital heart disease. G Ital Cardiol 7:336–343Google Scholar
  3. 3.
    Garson A Jr, Allen HD, Gersony WM, Gillette PC, Hohn AR, Pinsky WW et al (1994) The cost of congenital heart disease in children and adults: A model for multicenter assessment of price and practice variation. Arch Pediatr Adolesc Med 148:1039–1045PubMedGoogle Scholar
  4. 4.
    Gatzoulis M, Webb G, Daubeny P (2003) Diagnosis and management of adult congenital heart disease, 1st edn. Churchill Livingstone, Philadelphia, PA, pp 1–25Google Scholar
  5. 5.
    Karamlou T, Diggs BS, Person T, Ungerleider RM, Welke KF (2008) National practice patterns for management of adult congenital heart disease. Operations by pediatric heart surgeons decrease in-hospital death. Circulation 118:2345–2352CrossRefPubMedGoogle Scholar
  6. 6.
    Kogon B, Plattner C, Leong T, Kirshbom P, Kanter K, McConnell M et al (2009) Adult congenital heart surgery: adult or pediatric facility? Adult or pediatric surgeon? Ann Thorac Surg 87:833–840CrossRefPubMedGoogle Scholar
  7. 7.
    Webb G, Williams R (2001) Care of the adult with congenital heart disease: 32nd Bethesda Conference. J Am Coll Cardiol 37:1161–1198CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2010

Authors and Affiliations

  1. 1.Sibley CardiologyChildren’s Healthcare of AtlantaAtlantaUSA
  2. 2.Division of Cardiothoracic SurgeryEmory University School of MedicineAtlantaUSA

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