Outcomes Analysis and Quality Improvement for the Treatment of Patients With Pediatric and Congenital Cardiac Disease

World Journal for Pediatric and Congenital Heart Surgery

Volumn 2, Issue 4, 2011, Pages 620-633

  Jacobs, Jeffrey Phillip ^a   Pasquali, Sara K ^b   Jeffries, Howard ^c   Jones, Schonay Barnett ^e   Cooper, David S ^a   Vincent, Robert ^d  

^a UNIVERSITY OF SOUTH FLORIDA   (United States)

^b DUKE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^c UNIVERSITY OF WASHINGTON SCHOOL OF MEDICINE   (United States)

^d EMORY UNIVERSITY SCHOOL OF MEDICINE   (United States)

^e NONE

Author keywords

congenital heart disease; congenital heart surgery; database; outcomes; quality assessment; quality improvement; quality of life

Indexed keywords

EID: 84992792929     PISSN: 21501351     EISSN: 21500136     Source Type: Journal    
DOI: 10.1177/2150135111406293     Document Type: Review

References (71)

1. Mavroudis C Jacobs JP. The international congenital heart surgery nomenclature and database project. Ann Thoracic Surg. 2000; 69(4 suppl):S1–S372.
2. 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(2):105–115. Epub 2007 May 4, May 2007.
3. Jacobs JP Wernovsky G Elliott MJ. Analysis of outcomes for congenital cardiac disease: can we do better? in 2007 supplement to cardiology in the young: controversies and challenges facing paediatric cardiovascular practitioners and their patients. In: Jacobs JP, Wernovsky G, Gaynor JW, Anderson RH,(Eds. ), Cardiology in the Young. 2007; 17(Suppl 2):145–158. doi: 10.1017/S1047951107001278.
4. Jacobs JP. Cardiology in the young supplement: 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 S2):1–530.
5. Jacobs JP Jacobs ML Mavroudis C, et al. Nomenclature and databases for the surgical treatment of congenital cardiac disease–an updated primer and an analysis of opportunities for improvement. In: 2008 Cardiology in the Young Supplement: Databases and The Assessment of Complications associated with The Treatment of Patients with Congenital Cardiac Disease, The Multi-Societal Database Committee for Pediatric and Congenital Heart Disease, Jacobs Jeffrey P., MD, ed. Cardiol Young. 2008; 18(suppl 2):38–62.
6. Jacobs JP Maruszewski B Kurosawa H, et al. Congenital heart surgery databases around the world: do we need a global database? Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu. 2010; 13(1):3–19. PMID: 20307856.
7. Franklin RCG Jacobs JP Krogmann ON, et al. Nomenclature for congenital and paediatric cardiac disease: Historical perspectives and The International Pediatric and Congenital Cardiac Code. In: 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, JacobsJeffrey P., MD, ed. Cardiol Young. 2008;18(suppl 2):70–80.
8. 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 Cardio-thoracic Surg. 2004;26(1):18–37
9. 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. In 2005 supplement to cardiology in the young: controversies of the ventriculo-arterial junctions and other topics
10. Jacobs JP, Wernovsky G, Gaynor JW, Anderson RH, ed. Cardiol Young. 2005; 15(suppl 1):190–198.
11. 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 Thoracic Surg. 2006; 81(5):1937–1941.
12. 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 Thoracic Surg. 2007; 84(5):1416–1421.
13. Jacobs JP O’Brien SM Pasquali SK, et al. Clark paper: variation in outcomes for Benchmark operations: an analysis of the STS Congenital Heart Surgery Database. Richard Clark Award recipient for best use of the STS Database. Ann Thoracic Surg. Accepted for publication. In Press.
14. 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(1):110–118.
15. Lacour-Gayet FG Clarke D Jacobs JP, et al. The Aristotle Score: a complexity-adjusted method to evaluate surgical results. Eur J Cardio-thoracic Surg. 2004; 25(6):911–924.
16. 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(5):1635–1649. discussion 1635–1649.
17. Jacobs ML Jacobs JP Jenkins KJ Gauvreau K Clarke DR Lacour-Gayet FL. Stratification of complexity: the risk adjustment for congenital heart surgery-1 method and the Aristotle complexity score–past, present, and future. In: 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, Jacobs Jeffrey P., MD, ed. Cardiol Young. 2008; 18(suppl 2):163–168.
18. Clarke DR Lacour-Gayet F Jacobs JP, et al. The assessment of complexity in congenital cardiac surgery based on objective data. In: 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, Jacobs Jeffrey P., MD, ed. Cardiol Young. 2008; 18(suppl 2):169–176.
19. 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 Thoracic Surg. 2007; 84(6):2027–2037. PMID: 18036930.
20. Jacobs JP Jacobs ML Lacour-Gayet F, et al. 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(8):1117–1130.
21. O’Brien SM Clarke DR Jacobs JP, et al. An empirically based tool for analyzing mortality associated with congenital heart surgery. J Thoracic Cardiovasc Surg. 2009; 138(5):1139–1153. PMID: 19837218.
22. Clarke DR Breen LS Jacobs ML, et al. Verification of data in congenital cardiac surgery. In: 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. Jacobs Jeffrey P., MD, eds. Cardiol Young. 2008; 18(suppl 2):177–187.
23. Morales DLS McClellan AJ Jacobs JP. Empowering a database with national long-term data about mortality: the use of national death registries. In: 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, Jacobs Jeffrey P., MD, ed. Cardiol Young. 2008; 18(suppl 2):188–195.
24. Jacobs JP Haan CK Edwards FH, et al. Editorial for the annals of thoracic surgery: the rationale for incorporation of HIPAA compliant unique patient, surgeon, and hospital identifier fields in the STS Database. Ann Thoracic Surg. 2008; 86(3):695–698. doi:10.1016/j.athoracsur.2008.04.075.
25. Dokholyan RS Muhlbaier LH Falletta J, et al. Regulatory and ethical considerations for linking clinical and administrative databases. Am Heart J. 2009; 157(6):971–982. PMID: 19464406.
26. Hammill BG Hernandez AF Peterson ED Fonarow GC Schulman KA Curtis LH. Linking inpatient clinical registry data to Medicare claims data using indirect identifiers. Am Heart J. 2009; 157(6):995–1000.
27. Jacobs JP Edwards FH Shahian DM, et al. Successful linking of the society of thoracic surgeons adult cardiac surgery database to centers for medicare and medicaid services medicare data. Ann Thoracic Surg. 2010; 90(4):1150–1157.
28. Pasquali SK Jacobs JP Shook GJ, et al. Linking clinical registry data with administrative data using indirect identifiers: implementation and validation in the congenital heart surgery population. Am Heart J. 2010; 160(6):1099–1104.
29. Jacobs JP Edwards FH Shahian DM Prager RL Wright CD Puskas JD Morales DL Gammie JS Sanchez JA Haan CK Badhwar V George KM O’Brien SM Dokholyan RS Sheng S Peterson ED Shewan CM Feehan KM Han JM Jacobs ML Williams WG Mayer JE Jr Chitwood WR Jr Murray GF Grover FL. Successful linking of the Society of Thoracic Surgeons Database to Social Security Data to examine survival after cardiac operations. The Annals of Thoracic Surgery, 2011 Jul; 92(1):32–9.
30. Sanders SP. Conducting pediatric cardiovascular trials. Am Heart J. 2001; 142(2):218–223.
31. Darst JR Newburger JW Resch S Rathod RH Lock JE. Deciding without data. Conget Heart Dis. 2010; 5(4):339–342.
32. Welke KF O’Brien SM Peterson ED, et al. The complex relationship between pediatric cardiac surgical case volumes and mortality rates in a national clinical database. J Thorac Cardiovasc Surg. 2009; 137(5):1133–1140.
33. Wernovsky G Ghanayem N Ohye RG, et al. Hypoplastic left heart syndrome: consensus and controversies in 2007. Cardiol Young. 2007; 17(suppl 2):S75–S86.
34. Burstein D Rossi A Jacobs J, et al. Variation in models of care delivery for children undergoing congenital heart surgery in the United States. World J Pediatr Congen Heart Surg. 2010; 1(5):8–14.
35. Pasquali SK Hall M Slonim AD, et al. Off-label use of cardiovascular medications in children hospitalized with congenital and acquired heart disease. Circ Cardiovasc Qual Outcomes. 2008; 1(2):74–83.
36. Li JS Yow E Berezny KY Bokesch PM, et al PICOLO Investigators. Dosing of clopidogrel for platelet inhibition in infants and young children: primary results of the Platelet Inhibition in Children On cLOpidogrel (PICOLO) trial. Circulation. 2008; 117(4):553–559.
37. Li JS Cohen-Wolkowiez M Pasquali SK. Pediatric clinical trials: Lessons learned. J Cardiovasc Pharmacol. 2011; Jul; 58(1):4–8.
38. Li JS Colan SD Sleeper LA, et al. Lessons learned from a pediatric clinical trial: the pediatric heart network angiotensin-converting enzyme inhibition in mitral regurgitation study. Am Heart J. 2011; 161(2):233–240.
39. Jacobs ML Mavroudis C Jacobs JP Tchervenkov CI Pelletier GJ. Report of the 2005 STS Congenital Heart Surgery Practice and Manpower Survey. Ann Thorac Surg. 2006; 82(3):1152–1158.
40. Fergusson DA Hebert PC Mazer CD, et al. A comparison of aprotinin and lysine analgues in high-risk cardiac surgery. N Engl J Med. 2008; 358(22):2319–2331.
41. Mangano D Tudor JC Dietzel C. The risk associated with aprotinin in cardiac surgery. N Engl J Med. 2006; 354(4):353–365.
42. Guzzetta NA Evans FM Rosenberg ES, et al. The impact of aprotinin on postoperative renal dysfunction in neonates undergoing cardiopulmonary bypass. Anesth Analg. 2009; 108(2):448–455.
43. Backer CL Kelle AM Stewart RD, et al. Aprotinin is safe in pediatric patients undergoing cardiac surgery. J Thorac and Cardiovas Surg. 2007; 134(6):1421–1426.
44. Pasquali SK Hall M Li JS, et al. Safety of aprotinin in congenital heart operations: results from a large multicenter database. Ann Thorac Surg. 2010; 90( ):14–21.
45. Robertson-Malt S Afrane B Elbarbary M. Prophylactic steroids for pediatric open heart surgery. Cochrane Database System Rev. 2007;(4):CD005550. DOI: 10.1002/14651858.CD005550.pub2.
46. Pasquali SK Hall M Li JS, et al. Corticosteroids and outcome in children undergoing congenital heart surgery: analysis of the pediatric health information systems database. Circulation. 2010; 122(21):2123–2130.
47. Johnson JN Jaggers J Li S, et al. Center variation and outcomes associated with delayed sternal closure following stage 1 palliation for hypoplastic left heart syndrome. J Thorac and Cardiovasc Surg. 2010; 139(5):1205–1210.
48. U.S. News & World Report’s America’s Best Children’s Hospitals. http://www.rti.org/besthospitals. Accessed March 2, 2011.
49. Burstein DS Jacobs JP Li JS Sheng S O’Brien SM Rossi AF Checchia PA Wernovsky G Welke KF Peterson ED Jacobs ML Pasquali SK. Care models and associated outcomes in congenital heart surgery. Pediatrics. 2011 Jun; 127(6):e1482–9. Epub 2011 May 16. PMID: 21576309, June 2011.
50. Fudge JC Li S Jaggers J, et al. Outcomes in patients with Down syndrome undergoing congenital heart surgery: analysis of a national clinical database. Pediatrics. 2010; 126(2):315–322.
51. Klugman D Berger JT Sable CA He J Khandelwal SG Slonim AD. Pediatric patients hospitalized with myocarditis: a multi-institutional analysis. Pediatr Cardiol. 2010; 31(2):222–228.
52. 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. In: 2008 Cardiology in the young supplement: 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, Jacobs Jeffrey P., MD, eds. Cardiol Young. 2008; 18(suppl 2):101–115.
53. Jenkins KJ Beekman RH III Bergersen LJ, et al. Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease–the perspective of cardiology. In: 2008 Cardiology in the young supplement: 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, Jacobs Jeffrey P., MD, eds. Cardiol Young. 2008; 18(suppl 2):116–123.
54. 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. In: 2008 Cardiology in the young supplement: 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, Jacobs Jeffrey P., MD, eds. Cardiol Young. 2008; 18(suppl 2):124–129.
55. 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. In: 2008 Cardiology in the young supplement: 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, Jacobs Jeffrey P., MD, eds. Cardiol Young. 2008; 18(suppl 2):130–136.
56. 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. In: 2008 Cardiology in the young supplement: 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, Jacobs Jeffrey P., MD, eds. Cardiol Young. 2008; 18(suppl 2):137–144.
57. 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(9): 597–603.
58. 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: 737–42.
59. 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(suppl 2):92–100.
60. Jacobs JP Cerfolio RJ Sade RM. The ethics of transparency: publication of cardiothoracic surgical outcomes in the lay press. Ann Thoracic Surg. 2009; 87(3):679–686.. PMID: 19231369
61. Shahian DM Edwards F Jacobs JP, et al. Public reporting of cardiac surgery performance - part 1: history, rationale, impact. Ann Thoracic Surg. Accepted for publication. In press for September 2011.
62. Shahian DM Edwards F Jacobs JP, et al. Public reporting of cardiac surgery performance - part 2: implementation. Ann Thoracic Surg. Accepted for publication. In press for September 2011.
63. Institute of Medicine. To err is human: building a safer heatlh system. In KohnLT,CorriganJM,DonaldsonMS, eds. Washington, DC: National Academy Press; 2000.
64. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001.
65. Hagan P. The Continuous Performance Improvement Journey (CPI): a long and winding road, in leading the lean healthcare journey: driving culture change to increase value. In Joan W, Patrick H, Howard J, eds., NY: Productivity Press; 2011.
66. Graban M.: Improving Quality, Patient Safety and Employee Satisfaction. New York, NY: Productivity Press; 2009.
67. Womack J Lean JD. Thinking: Banish Waste and Create Wealth in Your Corporation. New York, NY: Free Press; 2003.
68. Deeter K Zimmerman J. Developing and implementing pull systems in the intensive care unit, in leading the lean healthcare journey: driving culture change to increase value. In: Joan W, Patrick H, Howard J, eds. New York, NY: Productivity Press, 2011.
69. Deeter KH King MA Ridling D Irby GL Lynn AM Zimmerman JJ. Successful implementation of a pediatric sedation protocol for mechanically ventilated patients. Crit Care Med. 2011 Apr; 39(4):683–8.
70. Endorsing Performance Measures for Pediatric Cardiac Surgery. http://www.qualityforum.org/projects/pediatric-cardiac-surgery.aspx. Accessed March 5, 2011.
71. Patient and Family Advisors Council Network–a blog used to ask questions, find out what has worked at other hospitals, network with other advisors and share information. www.pfacnetwork@listserv.com. Accessed December 1, 2011.