Invited Commentary: The Assessment of Outcomes and the Improvement of Quality of the Treatment of Patients With Congenital and Pediatric Cardiac Disease

Mavroudis C Jacobs JP . The International Congenital Heart Surgery Nomenclature and Database Project. Ann Thorac Surg. 2000;64(4 suppl):S1–S372.

Jacobs JP , ed. 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 2):1–530.

Jacobs JP Jacobs ML Mavroudis C . Nomenclature and databases for the surgical treatment of congenital cardiac disease—an updated primer and an analysis of opportunities for improvement. In: Jacobs JP ed. 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, ed. Cardiol Young. 2008;18(suppl 2):38–62.

Jacobs JP Maruszewski B Kurosawa H . Congenital heart surgery databases around the world: do we need a global database? Semin Thorac Cardio Vasc Surg Pediatr Card Surg Ann. 2010;13(1):3–19.PMID: 20307856

Wray J Brown K Marino BS Franklin RCG . Medical test results don’t tell the whole story: health-related quality of life offers a patient perspective on outcomes. WJPCHS. 2011;2(4):566–575.

Iyer SB Anderson JB Slicker J Beekman RH . Using statistical process control to identify early growth failure among infants with hypoplastic left heart syndrome. WJPCHS. 2011;2(4):576–585.

Caplan C Vener DF . Databases and outcomes in congenital cardiac anesthesia. WJPCHS. 2011;2(4):586–593.

Gutgesell HP Hillman DG McHugh KE Dean P Matherne GP . Use of an administrative database to determine clinical management and outcomes in congenital heart disease. WJPCHS. 2011;2(4):593–596.

Jacobs JP Pasquali SK . Jeffries H, Barnett-Jones S, Cooper DC, Vincent R. Outcomes analysis and quality improvement for the treatment of patients with pediatric and congenital cardiac disease. WJPCHS. 2011;2(4):620–633.

Marino BS Tomlinson RS Wernovsky G . Validation of the pediatric cardiac quality of life inventory. Pediatrics. 2010;126(3):498–508.

Wray J Brown K Franklin R . A new disease specific quality of life measure for children and adolescents in the United Kingdom. Circulation. 2010;122:A13765.

Kugler JD Beekman Iii RH Rosenthal GL . Development of a pediatric cardiology quality improvement collaborative: from inception to implementation. From the Joint Council on Congenital Heart Disease Quality Improvement Task Force. Congenit Heart Dis. 2009;4(5):318–328.

Jacobs JP Jacobs ML Mavroudis C Lacour-Gayet FG Tchervenkov CI . Executive Summary: the Society of Thoracic Surgeons Congenital Heart Surgery Database—Thirteenth Harvest—(July 1, 2006-June 30, 2010). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, NC, USA; Fall 2010 Harvest.

Jacobs JP Jacobs ML Mavroudis C Lacour-Gayet FG Tchervenkov CI . Executive summary: the Society of Thoracic Surgeons Congenital Heart Surgery Database - Fourteenth Harvest – (January 1, 2007-December 31, 2010). The Society of Thoracic Surgeons (STS) and Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, NC, USA, Spring 2011 Harvest.

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(3):1152–1158., 1159e1-1159e5; discussion 1158-1159

Agency for Healthcare Research and Quality, Healthcare Cost and Utilization Project. http://www.ahrq.gov/data/hcup/. Accessed September 28, 2009.

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: Jacobs JP , ed. 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. Cardiol Young. 2008;18(suppl 2):137–144.

Cronk CE Malloy ME Pelech AN . Completeness of state administrative databases for surveillance of congenital heart disease. Birth Defects Res A Clin Mol Teratol. 2003;67(9):597–603.

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):737–742.

Strickland MJ Riehle-Colarusso TJ Jacobs JP . The importance of nomenclature for congenital cardiac disease: implications for research and evaluation. In: Jacobs JP , ed. 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. Cardiol Young. 2008;18(suppl 2):92–100.

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.

Welke KF Diggs BS Karamlou T Ungerleider RM . Comparison of pediatric cardiac surgical mortality rates from national administrative data to contemporary clinical standards. Ann Thorac Surg. 2009;87(1):216–223.

Jacobs JP Edwards FH Shahian DM . Successful linking of the Society of Thoracic Surgeons Adult Cardiac Surgery Database to Centers for Medicare and Medicaid Services Medicare data. Ann Thorac Surg. 2010;90(4):1150–1157.

Jacobs JP Edwards FH Shahian DM . Successful linking of the Society of Thoracic Surgeons Database to Social Security Data to examine survival after cardiac operations. Ann Thorac Surg. 2011;92(1):32–39.

Klein LW Edwards FH DeLong ER . 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(1):124–126.

Shahian DM Grover FL Mayer JE . Long-term survival following coronary artery bypass grafting surgery: a prediction model from The Society of Thoracic Surgeons National Database (The ASCERT study). In Review.

Agency for Healthcare Research and Quality. About the DEcIDE Network. http://www.effectivehealthcare.ahrq.gov/index.cfm/who-is-involved-in-the-effective-health-careprogram1/about-the-decide-network/. Accessed November 2, 2010.

Pasquali SK Jacobs JP Shook GJ . 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.

Pasquali SK Li JS He X . Comparative analysis of antifibrinolytic medications in pediatric heart surgery. J Thoracic Cardiovasc Surg. Accepted for publication, in press.

Pasquali SK Li JS He X . Timing of perioperative methylprednisolone and outcome in neonates undergoing heart surgery. In Review.