Strategies for longitudinal follow-up of patients with pediatric and congenital cardiac disease

Progress in Pediatric Cardiology

Volumn 32, Issue 2, 2011, Pages 97-102

  Jacobs, Jeffrey P ^a   Morales, David L S ^b,c  

^a UNIVERSITY OF SOUTH FLORIDA   (United States)

^b BAYLOR COLLEGE OF MEDICINE   (United States)

^c TEXAS CHILDREN S HOSPITAL   (United States)

Author keywords

Complications; Congenital heart disease; Database; Patient safety; Registry; Surgical outcomes

Indexed keywords

ARTICLE; CARDIOVASCULAR SURGERY; CONGENITAL HEART DISEASE; FOLLOW UP; HEALTH CARE DELIVERY; HEALTH CARE QUALITY; HUMAN; INFORMATION PROCESSING; LONGITUDINAL STUDY; MEDICAL INFORMATION SYSTEM; MEDICAL RESEARCH; OUTCOME ASSESSMENT; PEDIATRIC SURGERY; PRIORITY JOURNAL; REGISTER; SURGICAL PATIENT;

EID: 83155192062     PISSN: 10589813     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.ppedcard.2011.10.007     Document Type: Article

References (41)

1. Jacobs J.P., 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.
2. Jacobs J.P., Mavroudis C., Jacobs M.L., 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 May 2006, 81(5):1937-1941.
3. Jacobs J.P., Jacobs M.L., 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 October 2007, 84:1416-1421.
4. Jacobs J.P., Wernovsky G., Elliott M.J. Analysis of Outcomes for Congenital Cardiac Disease: Can We Do Better?. Cardiology in the Young September 2007, Volume 17, Supplement 2:145-158. 10.1017/S1047951107001278. J.P. Jacobs, G. Wernovsky, J.W. Gaynor, R.H. Anderson (Eds.).
5. 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.
6. Ann Thorac Surg September 2008, 86(3):695-698. 10.1016/j.athoracsur.2008.04.075.
7. 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. Cardiology in the Young December 9 2008, Volume 18, Supplement S2:1-530. J.P. Jacobs (Ed.).
8. Jacobs J.P. Introduction - Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease. Cardiology in the Young December 9 2008, Volume 18, Issue S2 (Suppl. 2):1-37. J.P. Jacobs (Ed.).
9. Jacobs J.P., Jacobs M.L., 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. Cardiology in the Young December 9 2008, Volume 18, Issue S2 (Suppl. 2):38-62. J.P. Jacobs (Ed.).
10. Morales D.L.S., McClellan A.J., Jacobs J.P. Empowering a database with national long-term data about mortality: the use of national death registries. Cardiology in the Young December 9 2008, Volume 18, Issue S2 (Suppl. 2):188-195. J.P. Jacobs (Ed.).
11. Dokholyan RS, Muhlbaier LH, Falletta J, et al. Regulatory and Ethical Considerations for Linking Clinical and Administrative Databases.
12. Am Heart J June 2009, 157(6):971-982. PMID: 19464406.
13. Hammill BG, Hernandez AF, Peterson ED, Fonarow GC, Schulman KA, Curtis LH. Linking inpatient clinical registry data to Medicare claims data using indirect identifiers.
14. Am Heart J June 2009, 157(6):995-1000.
15. Jacobs J.P., Edwards F.H., Shahian D.M., et al. Successful Linking of The Society of Thoracic Surgeons Adult Cardiac Surgery Database to Centers for Medicare and Medicaid Services Medicare Data. Ann Thorac Surg October 2010, 90:1150-1157.
16. Pasquali S.K., Jacobs J.P., Shook G.J., et al. Linking Clinical Registry Data with Administrative Data Using Indirect Identifiers: Implementation and Validation in the Congenital Heart Surgery Population. Am Heart J December 2010, 160:1099-1104.
17. Jacobs J.P., Edwards F.H., Shahian D.M., et al. Successful Linking of the Society of Thoracic Surgeons Database to Social Security Data to Examine Survival after Cardiac Operations. Ann Thorac Surg Jul. 2011, 92(1):32-39. PMID: 21718828, July 2011.
18. Pasquali SK, Li JS, He X, et al., Peterson ED, Shah SS, Jacobs JP. Comparative analysis of antifibrinolytic medications in pediatric heart surgery. J Thor Cardiovasc Surg, Accepted for publication, in press.
19. Jacobs J.P., Jacobs M.L., Mavroudis C., Lacour-Gayet F.G., Tchervenkov C.I. Spring 2009 Harvest, The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States.
20. Jacobs J.P., Jacobs M.L., Mavroudis C., Lacour-Gayet F.G., Tchervenkov C.I. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database - Eleventh Harvest - (July 1, 2009 - June 30, 2009) Fall 2009 Harvest, The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States.
21. Jacobs J.P., Jacobs M.L., Mavroudis C., Lacour-Gayet F.G., Tchervenkov C.I. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database - Twelfth Harvest - (January 1, 2006 - December 31, 2009) Spring 2010 Harvest, The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States.
22. Jacobs J.P., Jacobs M.L., Mavroudis C., Lacour-Gayet F.G., Tchervenkov C.I. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database - Thirteenth Harvest - (July 1, 2006 - June 30, 2010) Fall 2010 Harvest, The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States.
23. Jacobs J.P., Jacobs M.L., Mavroudis C., Lacour-Gayet F.G., Tchervenkov C.I. Executive Summary: The Society of Thoracic Surgeons Congenital Heart Surgery Database - Fourteenth Harvest - (January 1, 2007 - December 31, 2010) Spring 2011 Harvest, The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, North Carolina, United States.
24. Edwards M.B., Taylor K.M. Is 30-day mortality an adequate outcome statistic for patients considering heart valve replacement?. Ann Thorac Surg 2003, 76:482-485.
25. Jacobs J.P., Cerfolio R.J., Sade R.M. The ethics of transparency: publication of cardiothoracic surgical outcomes in the lay press. Ann Thorac Surgery 2009, 87:679-686.
26. Cronk C.E., Malloy M.E., Pelech A.N., et al. Completeness of state administrative databases for surveillance of congenital heart disease. Birth Defects Res A Clin Mol Teratol 2003, 67:597-603.
27. Frohnert B.K., Lussky R.C., Alms M.A., Mendelsohn N.J., Symonik D.M., Falken M.C. Validity of hospital discharge data for identifying infants with cardiac defects. J Perinatol 2005, 25:737-742.
28. Strickland M.J., Riehle-Colarusso T.J., Jacobs J.P., et al. The importance of nomenclature for congenital cardiac disease: implications for research and evaluation. Cardiology in the Young December 9 2008, Volume 18, Issue S2 (Suppl. 2):92-100. J.P. Jacobs (Ed.).
29. Klein L.W., Edwards F.H., DeLong E.R., et al. ASCERT: the American College of Cardiology Foundation-the Society of Thoracic Surgeons Collaboration on the comparative effectiveness of revascularization strategies. JACC Cardiovasc Interv 2010, 3:124-126.
30. Shahian DM, Grover FL, Mayer JE, et al. Long-term survival following coronary artery bypass grafting surgery: a prediction model from The Society of Thoracic Surgeons National Database (The ASCERT study). JAMA. In Review.
31. Agency for Healthcare Research and Quality About the DEcIDE Network Last accessed Nov 2, 2010. http://www.effectivehealthcare.ahrq.gov/index.cfm/who-is-involved-in-the-effective-health-careprogram1/about-the-decide-network/.
32. Clarke D.R., Breen L.S., Jacobs M.L., et al. Verification of data in congenital cardiac surgery. Cardiology in the Young December 9 2008, Volume 18, Issue S2 (Suppl. 2):177-187. J.P. Jacobs (Ed.).
33. The Social Security Death Master File Accessed: November 29, 2010. http://www.ssdmf.com/.
34. Likosky D.S., Dacey L.J., Baribeau Y.R., et al. Long-term survival of the very elderly undergoing coronary artery bypass grafting. Ann Thorac Surg 2008, 85:1233-1237.
35. Lattouf O.M., Thourani V.H., Kilgo P.D., et al. Influence of on-pump versus off-pump techniques and completeness of revascularization on long-term survival after coronary artery bypass. Ann Thorac Surg 2008, 86:797-805.
36. Puskas J.D., Kilgo P.D., Lattouf O.M., et al. Off-pump coronary bypass provides reduced mortality and morbidity and equivalent 10-year survival. Ann Thorac Surg 2008, 86:1139-1146.
37. Thourani V.H., Myung R., Kilgo P., et al. Long-term outcomes after isolated aortic valve replacement in octogenarians: a modern perspective. Ann Thorac Surg 2008, 86:1458-1464.
38. Puskas J.D., Thourani V.H., Kilgo P., et al. Off-pump coronary artery bypass disproportionately benefits high-risk patients. Ann Thorac Surg 2009, 88:1142-1147.
39. The National Death Index Accessed June 7, 2011. http://www.cdc.gov/nchs/ndi.htm.
40. MacKenzie T.A., Malenka D.J., Olmstead E.M., et al. Prediction of survival after coronary revascularization: modeling short-term, mid-term, and long-term survival. Ann Thorac Surg 2009, 87:463-472.
41. Wernovsky G., Rome J.J., Tabbutt S., et al. Guidelines for the outpatient management of complex congenital heart disease. Congenit Heart Dis 2006, 1:10-26.