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Nomenclature and databases for the surgical treatment of congenital cardiac disease – an updated primer and an analysis of opportunities for improvement

  • Jeffrey Phillip Jacobs (a1), Marshall Lewis Jacobs (a2), Constantine Mavroudis (a3), Carl Lewis Backer (a3), Francois G. Lacour-Gayet (a4), Christo I. Tchervenkov (a5), Rodney C. G. Franklin (a6), Marie J. Béland (a7), Kathy J. Jenkins (a8), Hal Walters (a9), Emile A. Bacha (a10), Bohdan Maruszewski (a11), Hiromi Kurosawa (a12), David Robinson Clarke (a4), J. William Gaynor (a13), Thomas L. Spray (a13), Giovanni Stellin (a14), Tjark Ebels (a15), Otto N. Krogmann (a16), Vera D. Aiello (a17), Steven D. Colan (a18), Paul Weinberg (a19), Jorge M. Giroud (a20), Allen Everett (a21), Gil Wernovsky (a22), Martin J. Elliott (a23) and Fred H. Edwards (a24)...

Abstract

This review discusses the historical aspects, current state of the art, and potential future advances in the areas of nomenclature and databases for the analysis of outcomes of treatments for patients with congenitally malformed hearts. We will consider the current state of analysis of outcomes, lay out some principles which might make it possible to achieve life-long monitoring and follow-up using our databases, and describe the next steps those involved in the care of these patients need to take in order to achieve these objectives. In order to perform meaningful multi-institutional analyses, we suggest that any database must incorporate the following six essential elements: use of a common language and nomenclature, use of an established uniform core dataset for collection of information, incorporation of a mechanism of evaluating case complexity, availability of a mechanism to assure and verify the completeness and accuracy of the data collected, collaboration between medical and surgical subspecialties, and standardised protocols for life-long follow-up.

During the 1990s, both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons created databases to assess the outcomes of congenital cardiac surgery. Beginning in 1998, these two organizations collaborated to create the International Congenital Heart Surgery Nomenclature and Database Project. By 2000, a common nomenclature, along with a common core minimal dataset, were adopted by The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons, and published in the Annals of Thoracic Surgery. In 2000, The International Nomenclature Committee for Pediatric and Congenital Heart Disease was established. This committee eventually evolved into the International Society for Nomenclature of Paediatric and Congenital Heart Disease. The working component of this international nomenclature society has been The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease, also known as the Nomenclature Working Group. By 2005, the Nomenclature Working Group crossmapped the nomenclature of the International Congenital Heart Surgery Nomenclature and Database Project of The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons with the European Paediatric Cardiac Code of the Association for European Paediatric Cardiology, and therefore created the International Paediatric and Congenital Cardiac Code, which is available for free download from the internet at [http://www.IPCCC.NET].

This common nomenclature, the International Paediatric and Congenital Cardiac Code, and the common minimum database data set created by the International Congenital Heart Surgery Nomenclature and Database Project, are now utilized by both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons. Between 1998 and 2007 inclusive, this nomenclature and database was used by both of these two organizations to analyze outcomes of over 150,000 operations involving patients undergoing surgical treatment for congenital cardiac disease.

Two major multi-institutional efforts that have attempted to measure the complexity of congenital heart surgery are the Risk Adjustment in Congenital Heart Surgery-1 system, and the Aristotle Complexity Score. Current efforts to unify the Risk Adjustment in Congenital Heart Surgery-1 system and the Aristotle Complexity Score are in their early stages, but encouraging. Collaborative efforts involving The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons are under way to develop mechanisms to verify the completeness and accuracy of the data in the databases. Under the leadership of The MultiSocietal Database Committee for Pediatric and Congenital Heart Disease, further collaborative efforts are ongoing between congenital and paediatric cardiac surgeons and other subspecialties, including paediatric cardiac anaesthesiologists, via The Congenital Cardiac Anesthesia Society, paediatric cardiac intensivists, via The Pediatric Cardiac Intensive Care Society, and paediatric cardiologists, via the Joint Council on Congenital Heart Disease and The Association for European Paediatric Cardiology.

In finalising our review, we emphasise that analysis of outcomes must move beyond mortality, and encompass longer term follow-up, including cardiac and non cardiac morbidities, and importantly, those morbidities impacting health related quality of life. Methodologies must be implemented in these databases to allow uniform, protocol driven, and meaningful, long term follow-up.

Copyright

Corresponding author

Correspondence to: Jeffrey P. Jacobs, MD, FACS, FACC, FCCP, Cardiovascular and Thoracic Surgeon, Surgical Director of Heart Transplantation and ECMO, The Congenital Heart Institute of Florida (CHIF), Children’s Hospital and Children’s Hospital of Tampa, Clinical Associate Professor, University of South Florida (USF), Cardiac Surgical Associates (CSA), 625 Sixth Avenue South, Suite 475, Saint Petersburg, Florida 33701, United States of America. Office Phone: (727) 822–6666; Office Fax: (727) 821-5994; Cell Phone: (727) 235–3100; E-mail: JeffJacobs@msn.com; Web Page: http://www.heartsurgery-csa.com/; Web Page: http://www.CHIF.us/

References

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1. Mavroudis C (Chairman) and Congenital Database Subcommittee: Backer CL, Bove E, Burke RP, Cameron D, Drinkwater DC, Edwards FH, Grover FL, Hammon JW Jr, Jacobs JP, Kron IL, Mayer JE, Myers JL, Ring WS, Siewers RD, Szarnicki RJ, Watson DC Jr: Data Analyses of the Society of Thoracic Surgeons National Congenital Cardiac Surgery Database, 1994–1997, Summit Medical, Minnetonka, MN, September 1998.
2.Jenkins, KJ, Gauvreau, K, Newburger, JW, Kyn, LB, Iezzoni, LI, Mayer, JE. Validation of relative value scale for congenital heart operations. Ann Thorac Surg 1998; 66: 860869 [Abstract].
3.Mavroudis, C, Gevitz, M, Ring, WS, McIntosh, C, Schwartz, M. The Society of Thoracic Surgeons National Congenital Cardiac Surgery Database. Ann Thorac Surg 1999; 68: 601624.
4.Franklin, RCG, Anderson, RH, Daniëls, O, et al. The European Paediatric Cardiac Code. Card Young 1999; 9: 633657.
5.Association for European Paediatric Cardiology. The European Paediatric Cardiac Code. Cardiol Young 2000; 10 (Suppl 1): 1146.
6.Mavroudis, C, Jacobs, JP. Congenital Heart Surgery Nomenclature and Database Project. Ann Thorac Surg 2000; 69 (Suppl 4): S1S372.
7.Mavroudis, C, Jacobs, JP. Congenital Heart Surgery Nomenclature and Database Project: Introduction. Ann Thorac Surg 2000; 69 (Suppl 4): S1.
8.Mavroudis, C, Jacobs, JP. Congenital Heart Surgery Nomenclature and Database Project: Overview and Minimum Dataset. Ann Thorac Surg 2000; 69 (Suppl 4): S2S17.
9.Jacobs, JP, Quintessenza, JA, Burke, RP, Mavroudis, C. Congenital Heart Surgery Nomenclature and Database Project: atrial septal defect. Ann Thorac Surg 2000; 69 (Suppl 4): S18S24.
10.Jacobs, JP, Burke, RP, Quintessenza, JA, Mavroudis, C. Congenital Heart Surgery Nomenclature and Database Project: ventricular septal defect. Ann Thorac Surg 2000; 69 (Suppl 4): S25S35.
11.Jacobs, JP, Burke, RP, Quintessenza, JA, Mavroudis, C. Congenital Heart Surgery Nomenclature and Database Project: atrioventricular canal defect. Ann Thorac Surg 2000; 69 (Suppl 4): S36S43.
12.Jacobs, JP, Quintessenza, JA, Gaynor, JW, Mavroudis, C. Congenital Heart Surgery Nomenclature and Database Project: aortopulmonary window. Ann Thorac Surg 2000; 69 (Suppl 4): S44S49.
13.Jacobs, ML. Congenital Heart Surgery Nomenclature and Database Project: truncus arteriosus. Ann Thorac Surg 2000; 69 (Suppl 4): S50S55.
14.Herlong, JR, Jaggers, JJ, Ungerleider, RM. Congenital Heart Surgery Nomenclature and Database Project: pulmonary venous anomalies. Ann Thorac Surg 2000; 69 (Suppl 4): S56S69.
15.Gaynor, JW, Weinberg, PM, Spray, TL. Congenital Heart Surgery Nomenclature and Database Project: systemic venous anomalies. Ann Thorac Surg 2000; 69 (Suppl 4): S70S76.
16.Jacobs, ML. Congenital Heart Surgery Nomenclature and Database Project: tetralogy of Fallot. Ann Thorac Surg 2000; 69 (Suppl 4): S77S82.
17.Lacour-Gayet, F. Congenital Heart Surgery Nomenclature and Database Project: right ventricular outflow tract obstruction-intact ventricular septum. Ann Thorac Surg 2000; 69 (Suppl 4): S83S96.
18.Tchervenkov, CI, Roy, N. Congenital Heart Surgery Nomenclature and Database Project: pulmonary atresia-ventricular septal defect. Ann Thorac Surg 2000; 69 (Suppl 4): S97S105.
19.Dearani, JA, Danielson, GK. Congenital Heart Surgery Nomenclature and Database Project: Ebstein’s anomaly and tricuspid valve disease. Ann Thorac Surg 2000; 69 (Suppl 4): S106S117.
20.Nguyen, KH. Congenital Heart Surgery Nomenclature and Database Project: aortic valve disease. Ann Thorac Surg 2000; 69 (Suppl 4): S118S131.
21.Mitruka, SN, Lamberti, JJ. Congenital Heart Surgery Nomenclature and Database Project: mitral valve disease. Ann Thorac Surg 2000; 69 (Suppl 4): S132S146.
22.Ring, WS. Congenital Heart Surgery Nomenclature and Database Project: aortic aneurysm, sinus of Valsalva aneurysm, and aortic dissection. Ann Thorac Surg 2000; 69 (Suppl 4): S147S163.
23.Myers, JL, Mehta, SM. Congenital Heart Surgery Nomenclature and Database Project: aortico-left ventricular tunnel. Ann Thorac Surg 2000; 69 (Suppl 4): S164S169.
24.Tchervenkov, CI, Jacobs, ML, Tahta, SA. Congenital Heart Surgery Nomenclature and Database Project: hypoplastic left heart syndrome. Ann Thorac Surg 2000; 69 (Suppl 4): S170S179.
25.Delius, RE. Congenital Heart Surgery Nomenclature and Database Project: pediatric cardiomyopathies and end-stage congenital heart disease. Ann Thorac Surg 2000; 69 (Suppl 4): S180S190.
26.Mehta, SM, Myers, JL. Congenital Heart Surgery Nomenclature and Database Project: diseases of the pericardium. Ann Thorac Surg 2000; 69 (Suppl 4): S191S196.
27.Jacobs, M, Mayer, JE Jr. Congenital Heart Surgery Nomenclature and Database Project: single ventricle. Ann Thorac Surg 2000; 69 (Suppl 4): S197S204.
28.Jaggers, JJ, Cameron, DE, Herlong, JR, Ungerleider, RM. Congenital Heart Surgery Nomenclature and Database Project: transposition of the great arteries. Ann Thorac Surg 2000; 69 (Suppl 4): S205S235.
29.Wilkinson, JL, Cochrane, AD, Karl, TR. Congenital Heart Surgery Nomenclature and Database Project: corrected (discordant) transposition of the great arteries (and related malformations). Ann Thorac Surg 2000; 69 (Suppl 4): S236S248.
30.Walters, HW 3rd, Mavroudis, C, Tchervenkov, CI, Jacobs, JP, Lacour-Gayet, F, Jacobs, ML. Congenital Heart Surgery Nomenclature and Database Project: double outlet right ventricle. Ann Thorac Surg 2000; 69 (Suppl 4): S249S263.
31.Tchervenkov, CI, Walters, HW 3rd, Chu, VF. Congenital Heart Surgery Nomenclature and Database Project: double outlet left ventricle. Ann Thorac Surg 2000; 69 (Suppl 4): S264S269.
32.Dodge-Khatami, A, Mavroudis, C, Backer, CL. Congenital Heart Surgery Nomenclature and Database Project: anomalies of the coronary arteries. Ann Thorac Surg 2000; 69 (Suppl 4): S270S297.
33.Backer, CL, Mavroudis, C. Congenital Heart Surgery Nomenclature and Database Project: patent ductus arteriosus, coarctation of the aorta, and interrupted aortic arch. Ann Thorac Surg 2000; 69 (Suppl 4): S298S307.
34.Backer, CL, Mavroudis, C. Congenital Heart Surgery Nomenclature and Database Project: vascular rings, tracheal stenosis, and pectus excavatum. Ann Thorac Surg 2000; 69 (Suppl 4): S308S318.
35.Deal, BJ, Jacobs, JP, Mavroudis, C. Congenital Heart Surgery Nomenclature and Database Project: arrhythmias. Ann Thorac Surg 2000; 69 (Suppl 4): S319S331.
36.Rocchini, AP. Congenital Heart Surgery Nomenclature and Database Project: therapeutic cardiac catheter interventions. Ann Thorac Surg 2000; 69 (Suppl 4): S332S342.
37.Gaynor, JW, Bridges, ND, Spray, TL. Congenital Heart Surgery Nomenclature and Database Project: end-stage lung disease. Ann Thorac Surg 2000; 69 (Suppl 4): S343S357.
38.Mehta, SM, Myers, JL. Congenital Heart Surgery Nomenclature and Database Project: cardiac tumors. Ann Thorac Surg 2000; 69 (Suppl 4): S358S368.
39.Joffs, C, Sade, RM. Congenital Heart Surgery Nomenclature and Database Project: palliation, correction, or repair? Ann Thorac Surg 2000; 69 (Suppl 4): S369S372.
40.Lacour-Gayet, F, Maruszewski, B, Mavroudis, C, Jacobs, JP, Elliott, MJ. Presentation of the International Nomenclature for Congenital Heart Surgery. The long way from nomenclature to collection of validated data at the EACTS. Eur J Cardiothorac Surg 2000; 18: 128135.
41. Jacobs JP, Jacobs ML, Mavroudis C, Lacour-Gayet FG. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database – Second Harvest – (1998–2001) Beta Site Test. The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States, Fall 2002 Harvest.
42.Mavroudis, C, Gevitz, M, Elliott, MJ, Jacobs, JP, Gold, JP. Virtues of a worldwide congenital heart surgery database. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2002; 5: 126131.
43.Lacour-Gayet, F. Risk stratification theme for congenital heart surgery. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2002; 5: 148152.
44.Jacobs, JP. Software development, nomenclature schemes, and mapping strategies for an international pediatric cardiac surgery database system. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2002; 5: 153162.
45.Mavroudis, C, Jacobs, JP. Congenital heart disease outcome analysis: methodology and rationale. J Thorac Cardiovasc Surg 2002; 123: 67.
46.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; [Abstract/Full Text].
47.Maruszewski, B, Lacour-Gayet, F, Elliott, MJ, et al. International Congenital Heart Surgery Nomenclature and Database Project; Congenital Heart Surgery Committees of the Society of Thoracic Surgeons and the European Association for Cardio-thoracic Surgery. Congenital Heart Surgery Nomenclature and Database Project: update and proposed data harvest. Eur J Cardiothorac Surg 2002; 21: 4749.
48.Gaynor, JW, Jacobs, JP, Jacobs, ML, et al. International Congenital Heart Surgery Nomenclature and Database Project. Congenital Heart Surgery Committees of the Society of Thoracic Surgeons. European Association for Cardio-Thoracic Surgery. Congenital Heart Surgery Nomenclature and Database Project: update and proposed data harvest. Ann Thorac Surg 2002; 73: 10161018.
49.Beland, MJ, Jacobs, JP, Tchervenkov, CI, Franklin, RC. International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease. Report from the Executive of The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease. Cardiol Young 2002; 12: 425430.
50.Franklin, RC, Jacobs, JP, Tchervenkov, CI, Beland, MJ. Bidirectional crossmap of the Short Lists of the European Paediatric Cardiac Code and the International Congenital Heart Surgery Nomenclature and Database Project. Cardiol Young 2002; 12: 431435.
51.Kurosawa, H, Gaynor, JW, Jacobs, JP, et al. Congenital heart surgery nomenclature and database project. Update and proposed data harvest. Jpn J Thorac Cardiovasc Surg 2002; 50: 498501.
52. Jacobs JP, Jacobs ML, Mavroudis C, Lacour-Gayet FG. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database – Third Harvest – (1998–2002). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States, Spring 2003 Harvest.
53. Jacobs JP, Jacobs ML, Mavroudis C, Lacour-Gayet FG. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database – Fourth Harvest – (2002–2003). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States, Spring 2004 Harvest.
54.Jenkins, KJ. Risk adjustment for congenital heart surgery: The RACHS-1 method. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2004; 7: 180184.
55.Beland, MJ, Franklin, RC, Jacobs, JP, et al. Update from the International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease. Cardiol Young 2004; 14: 225229.
56.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.
57.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.
58.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.
59. Jacobs JP, Jacobs ML, Mavroudis C, Lacour-Gayet FG. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database – Fifth Harvest – (2002–2004). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States, Spring 2005 Harvest.
60.Welke, KF, Jacobs, JP, Jenkins, KJ. Evaluation of quality of care for congenital heart disease. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2005: 157167.
61.Jacobs, JP, Elliott, MJ, Anderson, RH, et al. Creating a database with cardioscopy and intra-operative imaging. Cardiol Young 2005; 15 (Suppl 1): 184189.
62.Jacobs, JP, Maruszewski, B, Tchervenkov, CI, et al. The current status and future directions of efforts to create a global database for the outcomes of therapy for congenital heart disease. Cardiol Young 2005; 15 (Suppl 1): 190197.
63.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.
64.Lacour-Gayet, F, Clarke, DR, Aristotle Committee. The Aristotle method: a new concept to evaluate quality of care based on complexity. Curr Opin Pediatr 2005; 17: 412417.
65.Lacour-Gayet, F, Jacobs, JP, Clarke, DR, et al. Performance of surgery for congenital heart disease: shall we wait a generation or look for different statistics? J Thorac Cardiovasc Surg 2005; 130: 234235.
66.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 405–406.
67.Jacobs, ML. Editorial Comment. Eur J Cardiothorac Surg 2005; 28: 405406.
68.Jacobs, JP, Maruszewski, B. European Association for Cardio-thoracic Surgery-Society of Thoracic Surgeons Joint Congenital Heart Surgery Nomenclature and Database Committee. Computerized outcomes analysis for congenital heart disease. Curr Opin Pediatr 2005; 17: 586591.
69.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 2283–2284.
70.Jacobs, JP, Franklin, RCG, Jacobs, ML, et al. Classification of the functionally univentricular heart: unity from mapped codes. Cardiol Young 2006; 16 (Suppl 1): 921.
71.Jacobs, JP, Mavroudis, C, Jacobs, ML, et al. What is operative mortality? Defining death in a surgical registry database: A report of the STS Congenital Database Taskforce and the Joint EACTS-STS Congenital Database Committee. Ann Thorac Surg 2006; 81: 19371941.
72. Jacobs JP, Jacobs ML, Mavroudis C, Lacour-Gayet FG, Tchervenkov CI. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database – Sixth Harvest – (2002–2005). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States, Spring 2006 Harvest.
73.Tchervenkov, CI, Jacobs, JP, Weinberg, PM, et al. The nomenclature, definition and classification of hypoplastic left heart syndrome. Cardiol Young 2006; 16: 339368.
74.Jacobs, JP, Franklin, RCG, Wilkinson, JL, et al. The nomenclature, definition and classification of discordant atrioventricular connections. Cardiol Young 2006; 16 (Suppl 3): 7284.
75.Al-Radi, OO, Harrell, FE Jr, Caldarone, CA, et al. Case complexity scores in congenital heart surgery: a comparative study of the Aristotle Basic Complexity score and the Risk Adjustment in Congenital Heart Surgery (RACHS-1) system. J Thorac Cardiovasc Surg 2007; 133: 865875; Epub 2007 Mar 2.
76.Jacobs, JP, Mavroudis, C, Jacobs, ML, et al. Nomenclature and Databases – The Past, the Present, and the Future: A Primer for the Congenital Heart Surgeon. Pediatr Cardiol 2007; 28: 105115; Epub 2007 May 4.
77. Jacobs JP, Jacobs ML, Lacour-Gayet FG, et al. Case mix complexity adjustment using both RACHS-1 and Aristotle applied to 45635 operations in the STS Congenital Database. Presented at The 87th Annual Meeting of The American Association for Thoracic Surgery (AATS), Washington DC, USA, Monday, May 7, 2007.
78. 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.
79.Lacour-Gayet, F, Jacobs, ML, Jacobs, JP, Mavroudis, C. The need for an objective evaluation of morbidity in congenital heart surgery. Ann Thorac Surg 2007; 84: 12.
80.Lacour-Gayet, FG, Jacobs, JP, Clarke, DR, Maruszewski, B, Jacobs, ML, O’Brien, SM, Mavroudis, C. Evaluation of quality of care in congenital heart surgery: contribution of the Aristotle Complexity Score. Adv Pediatr 2007; 54: 6783; PMID: 17918467, 2007.
81.Jacobs, JP, Anderson, RH, Weinberg, PM, et al. The nomenclature, definition and classification of cardiac structures in the setting of heterotaxy. Cardiol Young 2007; 17 (Suppl 2): 128; doi:10.1017/S1047951107001138, September 2007.
82.Jacobs, JP, Wernovsky, G, Elliott, MJ. Analysis of outcomes for congenital cardiac disease: can we do better? Cardiol Young 2007; 17 (Suppl 2): 145158; doi:10.1017/S1047951107001278, September 2007.
83.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.
84.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 procedures. Ann Thorac Surg 2007; 84: 20272037, PMID: 18036930, December 2007.
85.Curzon, CL, Milford-Beland, S, Li, JS, et al. Cardiac surgery in infants with low birth weight is associated with increased mortality: analysis of the Society of Thoracic Surgeons Congenital Heart Database. J Thorac Cardiovasc Surg 2008; 135: 546551. Epub 2008 Jan 18.
86. Jacobs JP, Jacobs ML, Mavroudis C, Lacour-Gayet FG, Tchervenkov CI. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database – Eighth Harvest – (January 1, 2004–December 31, 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.
87. Clarke, DR, O’Brien SM, Jacobs JP, et al. A new chapter in outcome analysis for congenital heart surgery: empirically based mortality index. Presented at the 34th Annual Meeting of The Western Thoracic Surgical Association, Sheraton Keauhou Bay Resort & Spa, Kona, Hawaii, June 25–28, 2008.
88. Jacobs JP, Haan CK, Edwards FH, et al. The Rationale for Incorporation of HIPAA compliant unique patient, surgeon, and hospital identifier fields in the STS Database. Ann Thorac Surg 2008; 86: 695–698. doi: 10.1016/j.athoracsur.2008.04.075. September, 2008.
89.Jacobs, JP. Introduction – Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease. Cardiol Young 2008; 18 this Supplement: 1–37.
90.Tchervenkov, CI, Jacobs, JP, Bernier, PL, et al. The improvement of care for pediatric and congenital cardiac disease across the World: a challenge for the World Society for Pediatric and Congenital Heart Surgery. Cardiol Young 2008; 18 this Supplement: 63–69.
91.Franklin, RCG, Jacobs, JP, Krogmann, ON, et al. Nomenclature for congenital and paediatric cardiac disease: Historical perspectives and the International Paediatric and Congenital Cardiac Code. Cardiol Young 2008; 18 this Supplement: 70–80.
92.Jacobs, JP, Benavidez, OJ, Bacha, EA, Walters, HL III, Jacobs, ML. The nomenclature of safety and quality of care for patients with congenital cardiac disease: a report of the Society of Thoracic Surgeons Congenital Database Taskforce Subcommittee on Patient Safety. Cardiol Young 2008; 18 this Supplement: 81–91.
93.Strickland, MJ, Riehle-Colarusso, TJ, Jacobs, JP, et al. The importance of nomenclature for congenital cardiac disease: implications for research and evaluation. Cardiol Young 2008; 18 this Supplement: 92–100.
94.Jacobs, ML, Jacobs, JP, Franklin, RCG, et al. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiac surgery. Cardiol Young 2008; 18 this Supplement: 101–115.
95.Jenkins, KJ, Beekman, RH III, Bergersen, L, et al. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiology. Cardiol Young 2008; 18 this Supplement: 116–123.
96.Vener, DF, Jacobs, JP, Schindler, E, Maruszewski, B, Andropoulos, D. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of anaesthesia. Cardiol Young 2008; 18 this Supplement: 124–129.
97.LaRovere, JM, Jeffries, HE, Sachdeva, RC, et al. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of critical care. Cardiol Young 2008; 18 this Supplement: 130–136.
98.Welke, KF, Karamlou, T, Diggs, BS. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – a comparison of administrative and clinical data. Cardiol Young 2008; 18 this Supplement: 137–144.
99.O’Brien, SM, Gauvreau, K. Statistical issues in the analysis and interpretation of outcomes for congenital cardiac surgery. Cardiol Young 2008; 18 this Supplement: 145–151.
100.Hickey, EJ, McCrindle, BW, Caldarone, CA, Williams, WG, Blackstone, EH. Making sense of congenital cardiac disease with a research database: The Congenital Heart Surgeons’ Society data center. Cardiol Young 2008; 18: 1this Supplement: 152–162.
101.Jacobs, ML, Jacobs, JP, Jenkins, KJ, Gauvreau, K, Clarke, DR, Lacour-Gayet, FG. Stratification of complexity: The Risk Adjustment for Congenital Heart Surgery-1 Method and The Aristotle Complexity Score – past, present, and future. Cardiol Young 2008; 18 this Supplement: 163–168.
102.Clarke, DR, Lacour-Gayet, FG, Jacobs, JP, et al. The assessment of complexity in congenital cardiac surgery based on objective data. Cardiol Young 2008; 18 this Supplement: 169–176.
103.Clarke, DR, Breen, LS, Jacobs, ML, et al. Verification of data in congenital cardiac surgery. Cardiol Young 2008; 18 this Supplement: 177–187.
104.Morales, DLS, McClellan, AJ, Jacobs, JP. Empowering a database with national long-term data about mortality: the use of national death registries. Cardiol Young 2008; 18 this Supplement: 188–195.
105.Bacha, E, Cooper, DS, Thiagarajan, R, et al. Cardiac complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 196–201.
106.Deal, BJ, Mavroudis, C, Jacobs, JP, Gevitz, M, Backer, CL. Arrhythmic complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 202–205.
107.Shann, KG, Giacomuzzi, CR, Harness, L, et al. . On behalf of the International Consortium for Evidence-Based Perfusion. Complications relating to perfusion and extracorporeal circulation associated with the treatment of patients with congenital cardiac disease: Consensus Definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 206–214.
108.Cooper, DS, Jacobs, JP, Paul, J, et al. Pulmonary complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 215–221.
109.Welke, KF, Dearani, JA, Ghanayem, NS, Béland, MJ, Shen, I, Ebels, T. Renal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 222–225.
110.Checchia, PA, Karamlou, T, Maruszewski, B, Ohye, RG, Bronicki, R, Dodge-Khatami, A. Haematological and infectious complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 226–233.
111.Bird, G, Jeffries, HE, Licht, DJ, et al. Neurological complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 234–239.
112.Ghanayem, NS, Dearani, JA, Welke, KF, Béland, MJ, Shen, I, Ebels, T. Gastrointestinal complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 240–244.
113.Walters, HL III, Jeffries, HE, Cohen, GA, Klitzner, T. Congenital cardiac surgical complications of the integument, vascular system, vascular-line(s), and wounds: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 245–255.
114.Dickerson, H, Cooper, DS, Checchia, P, Nelson, DP. Endocrinalcomplications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 256–264.
115.Jeffries, HE, Bird, G, Law, Y, et al. Complications related to the transplantation of thoracic organs: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 265–270.
116.Vener, DF, Tirotta, CF, Andropoulos, D, Barach, P. Anaesthetic complications associated with the treatment of patients with congenital cardiac disease: consensus definitions from the Multi-Societal Database Committee for Pediatric and Congenital Heart Disease. Cardiol Young 2008; 18 this Supplement: 271–281.
117. O’Brien SM, Clarke DR, Jacobs JP, et al. A new chapter in outcome analysis for congenital heart surgery: empirically based mortality index. J Thorac Cardiovasc Surg. In review.
118. Cerfolio RJ, Jacobs JP, Sade RM. Ethics debate – should cardiothoracic surgical outcomes be published in the lay press? Ann Thorac Surg. In review.
119.Wernovsky, G, Rome, JJ, Tabbutt, S, et al. Guidelines for the outpatient management of complex congenital heart disease. Congenit Heart Dis 2006; 1: 1026.
120. Learning from Bristol: the report of the public inquiry into children’s heart surgery at the Bristol Royal Infirmary 1984–1995. http://www.bristol-inquiry.org.uk/, accessed May 21, 2005.
121. Sherry A. Children’s Hospital cardiology chief told to resign. Denver Post. Article Published: March 1, 2001. http://www.denverpost.com/news/news0301b.htm, accessed March 21, 2001.
122. Sherry A. Hospitals shield mortality rates. Denver Post. Article Published: March 2, 2001. http://www.denverpost.com/news/news0302d.htm, accessed March 21, 2001.
123. The Denver Post Editorial Board. At the heart of the problem. Denver Post. Article Published: March 2, 2001. http://www.denverpost.com/opinion/edits0302c.htm, accessed March 21, 2001.
124. Hernandez J. Other options. Denver Post. Article Published: March 3, 2001. http://www.denverpost.com/opinion/lett0311.htm, accessed March 21, 2001.
125. Johnson L. Baby’s death at Children’s turns parents to their faith. Denver Post. Article Published: March 3, 2001. http://www.denverpost.com/opinion/lett0311.htm, accessed March 21, 2001.
126. White S. Kids’ best interests: Re: “Children’s Hospital cardiology chief told to resign,” March 1. Denver Post. Article Published: March 3, 2001. http://www.denverpost.com/opinion/lett0311.htm, accessed March 21, 2001.
127. Weinberg S. Rare look inside a surgeon’s sanctum. Denver Post. Article Published: Sunday, April 20, 2003. http://www.denverpost.com/Stories/0%2C1413%2C36~28~1333663%2C00.html, accessed October 22, 2004.
128. The Report of the Manitoba Pediatric Cardiac Surgery Inquest: An inquest into twelve deaths at the Winnipeg Health Sciences Centre in 1994.
129.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 Workforce on Congenital Heart Surgery. Ann Thorac Surg 2006; 82: 11521158; 1159e1-5; discussion 1158–1159.
130.Boethig, D, Jenkins, KJ, Hecker, H, Thies, WR, Breymann, T. The RACHS-1 risk categories reflect mortality and length of hospital stay in a large German pediatric cardiac surgery population. Eur J Cardiothorac Surg 2004; 26: 1217.
131.Kang, N, Cole, T, Tsang, V, Elliott, M, de Leval, M. Risk stratification in paediatric open-heart surgery. Eur J Cardiothorac Surg 2004; 26: 311.
132.Elfstrom, J, Stubberod, A, Troeng, T. Patients not included in medical audit have a worse outcome than those included. Int J Qual Health Care 1996; 8: 153157.
133.Gibbs, JL, Monro, JL, Cunningham, D, Rickards, A, Society of Cardiothoracic Surgeons of Great Britain and Northern Ireland; Paediatric Cardiac Association; Alder Hey Hospital. Survival after surgery or therapeutic catheterisation for congenital heart disease in children in the United Kingdom: analysis of the central cardiac audit database for 2000-1. BMJ 2004; 328 (7440): 611615. Epub 2004 Feb 24.
134.Cronk, CE, Malloy, ME, Pelech, AN, et al. Completeness of state administrative databases for surveillance of congenital heart disease. Birth Defects Res A Clin Mol Teratol 2003; 67: 597603.
135.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: 737742.
137.http://www.wspchs.org/, accessed June 14, 2007.

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