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Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiac surgery

  • Marshall Lewis Jacobs (a1), Jeffrey Phillip Jacobs (a2), Rodney C.G. Franklin (a3), Constantine Mavroudis (a4), Francois Lacour-Gayet (a5), Christo I. Tchervenkov (a6), Hal Walters (a7), Emile A. Bacha (a8), David Robinson Clarke (a5), J. William Gaynor (a9), Thomas L. Spray (a9), Giovanni Stellin (a10), Tjark Ebels (a11), Bohdan Maruszewski (a12), Zdzislaw Tobota (a12), Hiromi Kurosawa (a13) and Martin Elliott (a14)...
Abstract

This review includes a brief discussion, from the perspective of cardiac surgeons, of the rationale for creation and maintenance of multi-institutional databases of outcomes of congenital heart surgery, together with a history of the evolution of such databases, a description of the current state of the art, and a discussion of areas for improvement and future expansion of the concept. Five fundamental areas are reviewed: nomenclature, mechanism of data collection and storage, mechanisms for the evaluation and comparison of the complexity of operations and stratification of risk, mechanisms to ensure the completeness and accuracy of the data, and mechanisms for expansion of the current capabilities of databases to include comparison and sharing of data between medical subspecialties. This review briefly describes several European and North American initiatives related to databases for pediatric and congenital cardiac surgery the Congenital Database of The European Association for Cardio-Thoracic Surgery, the Congenital Database of The Society of Thoracic Surgeons, the Pediatric Cardiac Care Consortium, and the Central Cardiac Audit Database in the United Kingdom. Potential means of approaching the ultimate goal of acquisition of long-term follow-up data, and input of this data over the life of the patient, are also considered.

Copyright
Corresponding author
Correspondence to: Marshall Lewis Jacobs, MD, 6019 Goshen Road, Newtown Square, Pennsylvania 19073, United States of America. Tel: 001-610 356 2615; Fax: 001-610 356 2880; E-mail: marshall.jacobs@comcast.net
References
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1.Kirklin, JW, Barratt-Boyes, BG. Cardiac Surgery. John Wiley & Sons, New York, NY, 1986.
2.Jacobs, JP, Ungerleider, RM, Tchervenkov, CI, et al. Opinions from the audience response survey at the First Joint Meeting of the Congenital Heart Surgeons’ Society and the European Congenital Heart Surgeons Association. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2005; 8: 198217.
3.Trusler, GA, Castaneda, AR, Rosenthal, A, Blackstone, EH, Kirklin, JW. Current results of management in transposition of the great arteries, with special emphasis on patients with associated ventricular septal defect. J Am Coll Cardiol 1987; 10: 10611071.
4.Castaneda, AR, Trusler, GA, Paul, MH, Blackstone, EH, Kirklin, JW. The early results of treatment of simple transposition in the current era. J Thorac Cardiovasc Surg 1988; 95: 1428.
5.Williams, WG, McCrindle, BW. Practical experience with databases for congenital heart disease: a registry versus an academic database. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2002; 5: 132142.
6. Mavroudis C (Chairman) and Congenital Database Subcommittee: Backer CL, Bove E, Burke RP, et al. Data Analyses of the Society of Thoracic Surgeons National Congenital Cardiac Surgery Database, 1994–1997, Summit Medical, Minnetonka, MN, September 1998.
7.Mavroudis, C, Gevitz, M, Rings, WS, McIntosh, CL, Schwartz, M. The Society of Thoracic Surgeons National Congenital Heart Surgery Database: analysis of the First Harvest (1994–1997). Ann Thorac Surg 1999; 68: 601624.
8. Learning from Bristol: the report of the public inquiry into children’s heart surgery at the Bristol Royal Infirmary 1984–1995. Available at www.bristol-inquiry.org.uk. Accessed May 21, 2005.
9. Sherry A. Hospitals shield mortality rates. Denver Post March 1, 2001. www.denverpost.com/news/news0301b.htm, accessed March 21, 2001.
10. The Report of the Manitoba Pediatric Cardiac Surgery Inquest: An Inquest into twelve deaths at the Winnipeg Health Sciences Centre in 1994. www.pediatriccardiacinquest.mb.ca/, accessed May 21, 2005.
11.Williams, WG. Discussion of Jacobs JP, Lacour-Gayet FG, Jacobs ML, Clarke DR, Tchervenkov CI, Gaynor JW, Spray TL, Maruszewski B, Stellin G, Gould J, Dokholyan RS, Peterson EP, Elliott M, Mavroudis C. Initial application in the STS congenital database of complexity adjustment to evaluate surgical case mix and results. Ann Thorac Surg 2005; 79: 16351649.
12.Mavroudis, C, Jacobs, JP (eds). Congenital heart surgery nomenclature and database project. Ann Thorac Surg 2000; 69 (Suppl): S1S372.
13.Franklin, RCG, Anderson, RH, Daniëls, O, et al. The European Paediatric Cardiac Code. Card Young 1999; 9: 633657.
14.Béland, MJ, Franklin, RCG, Jacobs, JP, et al. Update from the International Working Group for Mapping and Coding of Nomenclature for Paediatric and Congenital Heart Disease. Cardiol Young 2004; 14: 225229.
15.Maruszewski, B, Lacour-Gayet, F, Monro, JL, Keogh, BE, Tobota, Z, Kansy, A. An attempt at data verification in the EACTS Congenital Database. Eur J Cardiothorac Surg 2005; 28: 400404; discussion 405-6.
16.Jacobs, ML, Mavroudis, C, Jacobs, JP, Tchervenkov, CI, Pelletier, GJ. Report of the 2005 STS Congenital Heart Surgery Practice and Manpower Survey: A Report from The STS Work Force on Congenital Heart Surgery. Ann Thorac Surg 2006; 82: 11521158, 1159e1-5; discussion 1158-9.
17. Jacobs JP, Jacobs ML, Mavroudis C, Lacour-Gayet FG, Tchervenkov CI. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database – Eighth Harvest – (2004–2007). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States, Spring 2008 Harvest.
18. Jacobs JP, Jacobs ML, Mavroudis C, Lacour-Gayet FG, Tchervenkov CI. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database – Seventh Harvest – (2003–2006). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States, Spring 2007 Harvest.
19.Jacobs, JP, Mavroudis, C, Jacobs, ML, et al. Lessons learned from the data analysis of the Second Harvest (1998–2001) of The Society of Thoracic Surgeons (STS) Congenital Heart Surgery Database. Eur J Cardiothorac Surg 2004; 26: 1837.
20.Jacobs, JP, Lacour-Gayet, FG, Jacobs, ML, et al. Initial application in the STS congenital database of complexity adjustment to evaluate surgical case mix and results. Ann Thorac Surg 2005; 79: 16351649.
21.Jacobs, JP, Jacobs, ML, Maruszewski, B, et al. Current status of the European Association for Cardio-Thoracic Surgery and the Society of Thoracic Surgeons Congenital Heart Surgery Database. Ann Thorac Surg 2005; 80: 22782283; discussion 2283-4.
22.Moller, JH, Powell, CB, Joransen, JA, Borbas, C. The pediatric cardiac care consortium--revisited. Jt Comm J Qual Improv. 1994; 20: 661668.
24.Franklin, RCG, Anderson, RH, Daniëls, O, et al. The European Paediatric Cardiac Code: the first revision. Report of the Coding Committee of the Association for European Paediatric Cardiology. Cardiol Young 2002; 12: 611618.
25.Clarke, DR, Breen, LS, Jacobs, ML, Franklin, RCG, Tobota, Z, Maruszewski, B. Data verification in congenital cardiac surgery. Cardiol Young 2008; 18 Suppl … (this supplement).
26. [http://www.ccad.org.uk/002/congenital.nsf/WMortality?Openview]. Accessed 9 February 2008 for Figure 11 (reproduced with permission).
27. [http://www.ccad.org.uk/002/congenital.nsf/0/16AFD27D0A18BD8D802573D3005CEE6D?OpenDocument?Benchmark]. Accessed 9 February 2008 for Figure 12 (reproduced with permission).
28.Gibbs, JL, Monro, JL, Cunningham, D, Rickards, A; Society of Cardiothoracic Surgeons of Great Britain and Northern Ireland; Paediatric Cardiac Association; Alder Hey Hospital (2004) Survival after surgery or therapeutic catheterization for congenital heart disease in children in the United Kingdom: analysis of the central cardiac audit database for 2001-1. BMJ 2004; 328: 611.
29.Spiegelhalter, DJ. Funnel plots for comparing institutional performance. Stat Med 2005; 24: 11851202.
30.Jenkins, KJ, Gauvreau, K, Newburger, JW, Spray, TL, Moller, JH, Iezzoni, LI. Consensus based method for risk adjustment for surgery for congenital heart disease. J Thorac Cardiovasc Surg 2002; 123: 110118.
31.Jenkins, KJ. Risk adjustment for congenital heart surgery: The RACHS-1 method. Semin Thorac Cardiovasc Surg: Pediatr Card Surg Annu 2004; 7: 180184.
32.Lacour-Gayet, FG, Clarke, D, Jacobs, JP, et al. and the Aristotle Committee. The Aristotle Score: a complexity-adjusted method to evaluate surgical results. Eur J Cardiothorac Surg 2004; 25: 911924.
33.Lacour-Gayet, FG, Clarke, D, Jacobs, JP, et al. and the Aristotle Committee. The Aristotle score for congenital heart surgery. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2004; 7: 185191.
34.Jacobs, JP, Mavroudis, C, Jacobs, ML, et al. What is operative mortality? Defining death in a surgical registry database: a report from the STS Congenital Database Task Force and the Joint EACTS-STS Congenital Database Committee. Ann Thorac Surg 2006; 81: 19371941.
35.Jacobs, JP, Jacobs, ML, Mavroudis, C, et al. What is operative morbidity? Defining complications in a surgical registry database: a report from the STS Congenital Database Task Force and the Joint EACTS-STS Congenital Database Committee. Ann Thorac Surg 2007; 84: 14161421.
36.O’Brien, SM, Jacobs, JP, Clarke, DR, et al. Accuracy of the Aristotle basic complexity score for classifying the mortality and morbidity potential of congenital heart surgery operations. Ann Thorac Surg 2007; 84: 20272037.
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Cardiology in the Young
  • ISSN: 1047-9511
  • EISSN: 1467-1107
  • URL: /core/journals/cardiology-in-the-young
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