Advertisement

Nomenclature, Classification, and Risk Score Assessment of the Adult with Congenital Heart Disease

  • Jeffrey P. Jacobs
Chapter
Part of the Congenital Heart Disease in Adolescents and Adults book series (CHDAA)

Abstract

More adults than children are alive with congenital heart disease, and many of these require cardiac surgery. Notwithstanding this fact, data about the outcomes of adults undergoing congenital heart surgery are limited. Multi-institutional databases are used for outcomes analysis, quality assessment, and quality improvement. The Society of Thoracic Surgeons (STS) Congenital Heart Surgery Database (CHSD) is the largest database of pediatric and congenital cardiac operations in the world. STS CHSD contains preoperative, operative, and outcomes data for all patients undergoing congenital and pediatric cardiovascular operations at participating hospitals. The nomenclature, classification, and risk score assessment provided by this platform is standardized across all participants. These tools facilitate multi-institutional initiatives to analyze outcomes and assess and ultimately improve the quality of care provided to adults with congenial heart disease who undergo cardiac surgery. The purpose of this chapter is to review nomenclature, classification, and risk scores for adults with congenital heart disease.

Keywords

Adult with congenital heart disease Classification Nomenclature Risk assessment Cardiac surgery 

References

  1. 1.
    Dearani JA, Mavroudis C, Quintessenza J, Deal BJ, Backer CL, Fitzgerald P, Connolly HM, Jacobs JP. Surgical advances in the treatment of adults with congenital heart disease. Curr Opin Pediatr. 2009;21(5):565–72.  https://doi.org/10.1097/MOP.0b013e3283303fa7.CrossRefPubMedGoogle Scholar
  2. 2.
    Jacobs JP, Shahian DM, Prager RL, Edwards FH, McDonald D, Han JM, D’Agostino RS, Jacobs ML, Kozower BD, Badhwar V, Thourani VH, Gaissert HA, Fernandez FG, Wright CD, Paone G, Cleveland JC Jr, Brennan JM, Dokholyan RS, Brothers L, Vemulapalli S, Habib RH, O'Brien SM, Peterson ED, Grover FL, Patterson GA, Bavaria JE. The Society of Thoracic Surgeons National Database 2016 annual report. Ann Thorac Surg. 2016;102(6):1790–7.  https://doi.org/10.1016/j.athoracsur.2016.10.015.CrossRefPubMedGoogle Scholar
  3. 3.
    Jacobs JP, Mayer JE Jr, Mavroudis C, O’Brien SM, Austin EH 3rd, Pasquali SK, Hill KD, Overman DM, St Louis JD, Karamlou T, Pizarro C, Hirsch-Romano JC, McDonald D, Han JM, Becker S, Tchervenkov CI, Lacour-Gayet F, Backer CL, Fraser CD, Tweddell JS, Elliott MJ, Walters H 3rd, Jonas RA, Prager RL, Shahian DM, Jacobs ML. The Society of Thoracic Surgeons Congenital Heart Surgery Database: 2017 update on outcomes and quality. Ann Thorac Surg. 2017;103(3):699–709.  https://doi.org/10.1016/j.athoracsur.2017.01.004.CrossRefPubMedGoogle Scholar
  4. 4.
    Jacobs ML, Jacobs JP, Hill KD, Hornik C, O'Brien SM, Pasquali SK, Vener D, Kumar SR, Habib RH, Shahian DM, Edwards FH, Fernandez FG. The Society of Thoracic Surgeons Congenital Heart Surgery Database: 2017 update on research. Ann Thorac Surg. 2017;104(3):731–41.  https://doi.org/10.1016/j.athoracsur.2017.07.001.CrossRefPubMedGoogle Scholar
  5. 5.
    Morales DL, Khan MS, Turek JW, Biniwale R, Tchervenkov CI, Rush M, Jacobs JP, Tweddell JS, Jacobs ML. Report of the 2015 Society of Thoracic Surgeons Congenital Heart Surgery practice survey. Ann Thorac Surg. 2017;103(2):622–8.  https://doi.org/10.1016/j.athoracsur.2016.05.108.CrossRefPubMedGoogle Scholar
  6. 6.
    International Pediatric and Congenital Cardiac Code. http://www.ipccc.net/. Accessed 26 Aug 2017.
  7. 7.
    Franklin RCG, Jacobs JP, Krogmann ON, Béland MJ, Aiello VD, Colan SD, Elliott MJ, Gaynor JW, Kurosawa H, Maruszewski B, Stellin G, Tchervenkov CI, Walters HL 3rd, Weinberg P, Anderson RH. Nomenclature for congenital and paediatric cardiac disease: historical perspectives and The International Pediatric and Congenital Cardiac Code. In: Jacobs JP, editor. 2008 Supplement to cardiology in the young: databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease, prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(Suppl 2):70–80.CrossRefGoogle Scholar
  8. 8.
    STS Congenital Heart Surgery Database v3.3. http://www.sts.org/sites/default/files/documents/CongenitalDataSpecsV3_3_Updated.pdf. Accessed 26 Aug 2017.
  9. 9.
    Cronk CE, Malloy ME, Pelech AN, Miller RE, Meyer SA, Cowell M, McCarver DG. Completeness of state administrative databases for surveillance of congenital heart disease. Birth Defects Res A Clin Mol Teratol. 2003;67(9):597–603.CrossRefGoogle Scholar
  10. 10.
    Frohnert BK, Lussky RC, Alms MA, Mendelsohn NJ, Symonik DM, Falken MC. Validity of hospital discharge data for identifying infants with cardiac defects. J Perinatol. 2005;25(11):737–42.CrossRefGoogle Scholar
  11. 11.
    Strickland MJ, Riehle-Colarusso TJ, Jacobs JP, Reller MD, Mahle WT, Botto LD, Tolbert PE, Jacobs ML, Lacour-Gayet FG, Tchervenkov CI, Mavroudis C, Correa A. The importance of nomenclature for congenital cardiac disease: implications for research and evaluation. In: Jacobs JP, editor. 2008 Supplement to cardiology in the young: databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease, prepared by: The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young. 2008;18(Suppl 2):92–100.CrossRefGoogle Scholar
  12. 12.
    Pasquali SK, Peterson ED, Jacobs JP, He X, Li JS, Jacobs ML, Gaynor JW, Hirsch JC, Shah SS, Mayer JE. Differential case ascertainment in clinical registry versus administrative data and impact on outcomes assessment for pediatric cardiac operations. Ann Thorac Surg. 2013;95(1):197–203.  https://doi.org/10.1016/j.athoracsur.2012.08.074.CrossRefPubMedGoogle Scholar
  13. 13.
    Jacobs JP, Jacobs ML, Lacour-Gayet FG, Jenkins KJ, Gauvreau K, Bacha E, Maruszewski B, Clarke DR, Tchervenkov CI, Gaynor JW, Spray TL, Stellin G, O'Brien SM, Elliott MJ, Mavroudis C. Stratification of complexity improves the utility and accuracy of outcomes analysis in a Multi-Institutional Congenital Heart Surgery Database: Application of the Risk Adjustment in Congenital Heart Surgery (RACHS-1) and Aristotle Systems in the Society of Thoracic Surgeons (STS) Congenital Heart Surgery Database. Pediatr Cardiol. 2009;30:1117–30.  https://doi.org/10.1007/s00246-009-9496-0.CrossRefPubMedGoogle Scholar
  14. 14.
    O’Brien SM, Clarke DR, Jacobs JP, Jacobs ML, Lacour-Gayet FG, Pizarro C, Welke KF, Maruszewski B, Tobota Z, Miller WJ, Hamilton L, Peterson ED, Mavroudis C, Edwards FH. An empirically based tool for analyzing mortality associated with congenital heart surgery. J Thorac Cardiovasc Surg. 2009;138(5):1139–53.CrossRefGoogle Scholar
  15. 15.
    Jacobs JP, Jacobs ML, Maruszewski B, Lacour-Gayet FG, Tchervenkov CI, Tobota Z, Stellin G, Kurosawa H, Murakami A, Gaynor JW, Pasquali SK, Clarke DR, Austin EH 3rd, Mavroudis C. Initial application in the EACTS and STS congenital heart surgery databases of an empirically derived methodology of complexity adjustment to evaluate surgical case mix and results. Eur J Cardiothorac Surg. 2012;42(5):775–80.  https://doi.org/10.1093/ejcts/ezs026.CrossRefPubMedPubMedCentralGoogle Scholar
  16. 16.
    Hörer J, Vogt M, Wottke M, Cleuziou J, Kasnar-Samprec J, Lange R, Schreiber C. Evaluation of the Aristotle complexity models in adult patients with congenital heart disease. Eur J Cardiothorac Surg. 2013;43(1):128–34; discussion 134–5.  https://doi.org/10.1093/ejcts/ezs143.CrossRefPubMedGoogle Scholar
  17. 17.
    Kogon B, Oster M. Assessing surgical risk for adults with congenital heart disease: are pediatric scoring systems appropriate? J Thorac Cardiovasc Surg. 2014;147(2):666–71.  https://doi.org/10.1016/j.jtcvs.2013.09.053.CrossRefPubMedGoogle Scholar
  18. 18.
    Hörer J, Kasnar-Samprec J, Cleuziou J, Strbad M, Wottke M, Kaemmerer H, Schreiber C, Lange R. Mortality following congenital heart surgery in adults can be predicted accurately by combining expert-based and evidence-based pediatric risk scores. World J Pediatr Congenit Heart Surg. 2016;7(4):425–35.  https://doi.org/10.1177/2150135116656001.CrossRefPubMedGoogle Scholar
  19. 19.
    Fuller SM, He X, Jacobs JP, Pasquali SK, Gaynor JW, Mascio CE, Hill KD, Jacobs ML, Kim YY. Estimating mortality risk for adult congenital heart surgery: an analysis of the Society of Thoracic Surgeons Congenital Heart Surgery Database. Ann Thorac Surg. 2015;100(5):1728–36.  https://doi.org/10.1016/j.athoracsur.2015.07.002.CrossRefPubMedGoogle Scholar
  20. 20.
    Mascio CE, Pasquali SK, Jacobs JP, Jacobs ML, Austin EH 3rd. Outcomes in adult congenital heart surgery: analysis of the Society of Thoracic Surgeons Database. J Thorac Cardiovasc Surg. 2011;142(5):1090–7.  https://doi.org/10.1016/j.jtcvs.2011.07.028.CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2019

Authors and Affiliations

  • Jeffrey P. Jacobs
    • 1
    • 2
  1. 1.Department of Surgery and PediatricsJohns Hopkins UniversityBaltimoreUSA
  2. 2.Division of Cardiovascular SurgeryJohns Hopkins All Children’s HospitalSt. PetersburgUSA

Personalised recommendations