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Eur J Cardiothorac Surg 2004;26:18-37
© 2004 Elsevier Science NL

Invited paper

Lessons learned from the data analysis of the second harvest (1998–2001) of the Society of Thoracic Surgeons (STS) Congenital Heart Surgery Database

^a Congenital Heart Institute of Florida (CHIF), Pediatric Cardiac Surgery, All Children's Hospital, University of South Florida School of Medicine, Saint Petersburg, FL, USA
^b Childrens Memorial Hospital, Northwestern University, Chicago, IL, USA
^c St Christophers Hospital for Children, Drexel University College of Medicine, Philadelphia, PA, USA
^d Denver Children's Hospital, University of Colorado, Denver, CO, USA
^e Montreal Children's Hospital, McGill University Health Center, Montreal, Que., Canada
^f Division of Pediatric Cardiothoracic Surgery, The Cardiac Center at The Children's Hospital of Philadelphia, Philadelphia, PA, USA
^g The Children's Memorial Health Institute, Department of Cardiothoracic Surgery, Al. Dzieci Polskich 20, 04-736 Warsaw, Poland
^h Pediatric Cardiac Surgery Unit, University of Padova Medical School, Via Giustiniani 2, 35128 Padova, Italy
ⁱ The Great Ormond Street Hospital for Children NHS Trust, London, UK
^j Duke Clinical Research Institute (DCRI), Duke University Medical Center, Durham, NC, USA

Received 16 October 2003; received in revised form 9 March 2004; accepted 31 March 2004.

^* Corresponding author. Tel.: +1-727-822-6666; fax: +1-727-821-5994
e-mail: jeffjacobs{at}msn.com

Objective: The analysis of the second harvest of the STS Congenital Heart Surgery Database produced meaningful outcome data and several critical lessons relevant to congenital heart surgery outcomes analysis worldwide. Methods: This data harvest represents the first STS multi-institutional experience with software utilizing the nomenclature and database requirements adopted by the STS and EACTS (April 2000 Annals of Thoracic Surgery). Members of the STS Congenital Heart Committee analyzed the STS data. Results: This STS harvest includes data from 16 centers (12787 cases, 2881 neonates, 4124 infants). In 2002, the EACTS reported similar outcome data utilizing the same database definitions (41 centers, 12736 cases, 2245 neonates, 4195 infants). Lessons from the analysis include: (1) Death must be clearly defined. (2) The Primary Procedure in a given operation must be documented. (3) Inclusionary and exclusionary criteria for all diagnoses and procedures must be agreed upon. (4) Missing data values remain an issue for the database. (5) Generic terms in the nomenclature lists, that is terms ending in Not Otherwise Specified (NOS), are redundant and decrease the clarity of data analysis. (6) Methodology needs to be developed and implemented to assure and verify data completeness and data accuracy. ‘Operative Mortality’ and ‘Mortality Assigned to this Operation’ were defined by the STS and EACTS; these definitions were not utilized uniformly. ‘Thirty Day Mortality’ was problematic because some centers did not track mortality after hospital discharge. Only ‘Mortality Prior to Discharge’ was consistently reported. Designation of Primary Procedure for a given operation determines its location for analysis. Until Complexity Scores lead to automated methodology for choosing the Primary Procedure, the surgeon must designate the Primary Procedure. Inclusionary and exclusionary criteria for all diagnoses and procedures have been developed in an effort to define acceptable concomitant diagnoses and procedures for each analysis. Improvements in data completeness can be achieved using a variety of techniques including developing more functional techniques of data entry at individual institutions and software improvements. Future versions of the STS Congenital Database will request that the coding of diagnoses and procedures avoid the terms ending in NOS. Conclusions: Lessons from this data harvest should improve congenital heart surgery outcome analysis.

Key Words: Outcomes analysis • Database • Nomenclature • Society of thoracic surgeons database • Congenital heart surgery database • Congenital heart surgery outcomes analysis

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