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Francois Lacour-Gayet
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Constantine Mavroudis
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Ann Thorac Surg 2002;73:1016-1018
© 2002 The Society of Thoracic Surgeons

Special report: congenital heart surgery database update

Congenital heart surgery nomenclature and database project: update and proposed data harvest

J. William Gaynor, MD*a, Jeffrey P. Jacobs, MDb, Marshall L. Jacobs, MDc, Martin J. Elliott, MDd, Francois Lacour-Gayet, MDe, Christo I. Tchervenkov, MDf, Bohdan Maruszewski, MD, PhDg, Constantine Mavroudis, MDh for the International Congenital Heart Surgery Nomenclature Database Project Congenital Heart Surgery Committees of The Society of Thoracic Surgeons European Association for Cardio-Thoracic Surgery

a Division of Pediatric Cardiothoracic Surgery, Cardiac Center at Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
b Division of Thoracic and Cardiovascular Surgery, All Children’s Hospital, University of South Florida College of Medicine, St. Petersburg, Florida, USA
c Section of Cardiothoracic Surgery, St. Christopher’s Hospital for Children, Philadelphia, Pennsylvania, USA
d Cardiothoracic Surgery, Hospital for Sick Children, Great Ormond Street, London, England, UK
e Cardiac Surgery, Universitäts-Krankenhaus Eppendorf, Hamburg, Germany
f Cardiac Surgery, Montreal Children’s Hospital, Montreal, Quebec, Canada
g Cardiac Surgery, Memorial Hospital Child’s Health Centre, Warsaw, Poland
h Department of Surgery, Division of Cardiovascular-Thoracic Surgery, Northwestern University Medical School, Children’s Memorial Hospital, Chicago, Illinois, USA

Accepted for publication November 15, 2001.

* Address reprint requests to Dr Gaynor, Division of Cardiothoracic Surgery, Children’s Hospital of Philadelphia, 34th St and Civic Center Blvd, Philadelphia, PA 19104 USA
e-mail: gaynor{at}email.chop.edu

Abstract

The first report of The Society of Thoracic Surgeons (STS) National Congenital Heart Surgery Database in 1998 reported the clinical features of 18 congenital heart categories. The report provided a significant amount of important information and also highlighted the strengths and weaknesses of the existing database. Following this report the STS Congenital Heart Surgery Committee in cooperation with the European Association of Cardio-Thoracic Surgery and the European Congenital Heart Surgeons Foundation initiated the International Congenital Heart Surgery Nomenclature and Database Project. The goal was to begin the standardization of nomenclature reporting strategies and establish the foundations for an international congenital heart surgery database. The first report of the International Congenital Heart Surgery Nomenclature Project was published in The Annals of Thoracic Surgery in April 2000. The current report outlines modifications to the minimum dataset as well as the diagnoses and procedure short lists. Plans for the next STS National Congenital Heart Surgery Database harvest are also presented.

In 1998 the first report of The Society of Thoracic Surgeons (STS) National Congenital Heart Surgery Database reported clinical features of 18 congenital heart categories compiled over a 4-year period using more than 8,000 patient records from 24 institutions [1, 2]. Outcome data included operative death, complications, and length of stay. The data analysis was largely descriptive and while the report provided a significant amount of important information, it also demonstrated the strengths and weaknesses of the existing database. After this initial report the STS Congenital Heart Surgery Committee in cooperation with the European Association for Cardio-Thoracic Surgery (EACTS) and the European Congenital Heart Surgeons Foundation (ECHSF) initiated the International Congenital Heart Surgery Nomenclature and Database Project. The goals of this project were to begin standardization of nomenclature and reporting strategies and establish the foundations for an international congenital heart surgery database.

In April 2000 the first report of the International Congenital Heart Surgery Nomenclature Database Project was published as a supplement to The Annals of Thoracic Surgery [3]. The manuscripts in this report reviewed the existing nomenclatures for congenital heart diagnoses and made recommendations for an inclusive rather than exclusive method of reporting. Two datasets for an international congenital heart surgery database were proposed: a minimum dataset and a comprehensive dataset. The comprehensive dataset was designed to allow detailed categorization of congenital heart defects and operative procedures. The comprehensive dataset also provides the capability of extensive reporting of preoperative and postoperative variables to allow for outcomes analysis and risk stratification. The minimum dataset was designed to create an essential dataset that would be mandatory for interinstitutional data sharing and would allow elucidation of basic trends. Since the original publication there have been several additions to the minimum dataset and to the Diagnoses and Procedures short lists, which are detailed in Table 1. The final minimum dataset can be viewed in its entirety at the URL: http://www.ctsnet.org/doc/5357.


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  		Table 1. Additions and Changes to the Minimum Dataset

 
The final minimum database dataset is composed of 38 items (25 mandatory, 13 optional). Four short lists have been defined for the following: (1) noncardiac abnormalities/general preoperative risk factors; (2) diagnoses; (3) procedures, and (4) complications. From these lists an appropriate entry can be chosen. The final version of the minimum dataset and the short lists and modifications have been approved by the STS Congenital Heart Surgery Committee and the EACTS Congenital Heart Surgery Committee [4] as well as by the ECHSF [3, 4]. All of these lists can be viewed at the URL: http://www.ctsnet.org/doc/5357.

The next report of the STS National Congenital Heart Surgery Database Committee will incorporate data from 1998 to 2001 utilizing the minimum database dataset. The data harvest and data analysis will be coordinated by the Duke Clinical Research Institute (DCRI), at Duke University. The minimum database dataset and reporting forms have been incorporated in the CardioAccess International Clinical Outcomes Database (CardioAccess Inc, St. Petersburg and Fort Lauderdale, FL). Electronic versions of the minimum dataset can be downloaded without charge from the web pages of CardioAccess (http://www.cardioaccess.com) or the STS Congenital Heart Surgery Committee (http://www.ctsnet.org/doc/5357) as well as from the web page for the European Cardiac Surgical Registry [ECSUR] URL: http://www.escur.ic.ac.uk. Users of the CardioAccess Comprehensive Database will receive an update with the export utility to submit data to DCRI; users of the free minimum database software will be able to download an export utility from the CardioAccess website. The 1998 to 2001 data harvest will include data from centers using either the CardioAccess database or the free minimum database software as of December 31, 2000.

The proposed data harvest will begin in 2002 with a report planned for late 2002. To contribute data, centers will need to sign a participation agreement with the STS. Participation fees for the data harvest and national database will be implemented as a sliding scale to encourage participation across a spectrum of centers. Fixed costs are associated with the generation of data reports as well as with the maintenance of the reporting process. Participation costs will be an initial charge of $500 for the cost of the report and an additional charge of $1 per patient enrolled. Queries regarding participation in the data harvest and STS certification for database software, and any questions from centers, individuals, and vendors interested in developing software utilizing the minimum dataset should be directed to Mary Eiken, Director, STS National Databases, The Society of Thoracic Surgeons, 401 North Michigan Ave, Chicago, IL 60611-4267; office telephone (312)321-6803; fax (312)527-6635.

The Association for European Pediatric Cardiology (AEPC) has independently proposed a diagnostic hierarchy for congenital heart defects, which was recently published in Cardiology in the Young [5]. Representatives of the AEPC, STS, EACTS, and ECHSF met during the October 2000 meeting of the EACTS in Frankfurt to discuss future collaboration. An agreement was reached for a joint committee with members from the International Congenital Heart Surgery Nomenclature and Database Project with representatives of the STS, EACTS, and ECHSF, and representatives of the AEPC to establish a system to reconcile and map the two coding systems. The initial step is defining equivalent diagnoses and procedures in the short lists that are used for the minimum dataset. To ensure that each diagnosis and procedure in one system can be mapped to an equivalent, it will be necessary to add terms. For example the AEPC hierarchy contains coding for interventional cardiology procedures in greater detail than the STS, EACTS, ECHSF coding. Considerable progress has been made in merging the two coding systems. A progress report was presented at the Third World Congress of Pediatric Cardiology and Cardiac Surgery in Toronto, Ontario (May 2001). Representatives from surgical and cardiology societies throughout the world are being invited to participate in the project including the Canadian Cardiovascular Society, the Council on Cardiovascular Disease in the Young of the American Heart Association, the American College of Cardiology, the Section on Cardiology of the American Academy of Pediatrics, and the Asian Society for Cardiovascular Surgery.

References

  1. Mavroudis C., the Congenital Database Subcommittee. Data analyses of the Society of Thoracic Surgeons National Congenital Cardiac Surgery Database, 1994–1997. Minnetonka, MN: Summit Medical, 1998.
  2. Mavroudis C., Gevitz M., Ring W.S., McIntosh C.L., Schwartz M. The Society of Thoracic Surgeons National Congenital Heart Surgery Database report: analysis of the first harvest (1994–1997). Ann Thorac Surg 1999;68:601-624.[Abstract/Free Full Text]
  3. Mavroudis C., Jacobs J.P. Congenital heart surgery nomenclature and database project: overview and minimum dataset. Ann Thorac Surg 2000;69(Suppl):2-17.[Free Full Text]
  4. Lacour-Gayet F., Maruszewski M., Mavroudis C., Jacobs J.P., Elliott M.J. Presentation of the international nomenclature for congenital heart surgery: the long way from nomenclature to collection of validated data at the EACTS. Eur J Cardio-Thorac Surg 2000;18:128-135.[Abstract/Free Full Text]
  5. Franklin R.C.G., Anderson R.H., Daniels O., et al. Report of the coding committee of the Association for European Paediatric Cardiology. Cardiol Young 1999;9:633-658.[Medline]



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This Article
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Jeffrey P. Jacobs
Marshall L. Jacobs
Martin J. Elliott
Francois Lacour-Gayet
Christo I. Tchervenkov
Bohdan Maruszewski
Constantine Mavroudis
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