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Eur J Cardiothorac Surg 2000;18:128-135
© 2000 Elsevier Science NL

Editorial

Presentation of the International Nomenclature for Congenital Heart Surgery. The long way from nomenclature to collection of validated data at the EACTS

CHD Committee at the EACTS, Marie Lannelongue Hospital, 133 Avenue de la Résistance, 92350 Le Plessis Robinson, France

Received 20 December 1999; received in revised form 11 April 2000; accepted 18 April 2000.

Corresponding author. Fax: +33-1-4094-5581
e-mail: flacourgayet{at}ccml.com

Abstract

An International Nomenclature for Congenital Heart Surgery was officially adopted at the Annual Meeting of the EACTS in Glasgow, UK on September 6, 1999. This nomenclature was achieved following 1 year's work of the International Nomenclature and Data Base Committee for Congenital Heart Surgery of the Society of Thoracic Surgeons. This international group included members from the STS, AATS, AHA and EACTS and associated surgeons and cardiologists from United States, Canada, Australia and Europe. The Nomenclature includes a minimal data set of 21 items and lists of 150 diagnoses, 200 procedures, 32 complications and 28 extra cardiac anomalies and preoperative risk factors. It will serve as a basis for the Pediatric European Cardiac Surgical Registry (http://www.pediatric.ecsur.org). The outcome of such an International Nomenclature represents an important event for the medical community in charge of treating patients with congenital heart diseases. It will allow scientific exchanges on an international scale and promote multicenter evaluation of congenital heart surgery. Nevertheless, this Nomenclature is only the first step. Further collection of validated data at the Pediatric ECSUR Data Base requires ethical belief, time consumption and financial resources. Comparison of results, according to pathologies, across centers and countries will help define, in the future, official European standards of Quality of Care available for health care organizations, public scrutiny and governmental agencies.

1. Introduction

The need for an International Nomenclature for congenital heart surgery (CHD) is requested to unify the data bases produced in the world. A common language is mandatory to enhance communication between the diagnosis and therapeutic ‘forces’ enrolled in the treatment of congenital heart diseases. A unified Nomenclature allows large multicenter studies that are able to produce numerous research projects in epidemiology, pathology, therapeutics and health care management.

An International Nomenclature opens the fields of advanced and adapted data bases. Nevertheless, an International Nomenclature is only the first step towards collection of validated data that implies time consumption, moral belief and financial resources.

2. Outcome of an International Nomenclature for Congenital Heart Surgery

An International Nomenclature for Congenital Heart Surgery was officially adopted at the Business Meeting of the EACTS in Glasgow, UK on September 6, 1999.

This achievement was the conclusion of a 12-month international project chaired by Constantine Mavroudis and Jeffrey Jacobs, along with the International Nomenclature and Data Base Committee (Appendix A) for CHD of the Society of Thoracic Surgeons (STS). This international group of 36 physicians included members from the STS, AATS, AHA and EACTS and associated surgeons and cardiologists from the United States, Canada, Australia and Europe. Members of this Committee have met at eight conferences from September 1998 to November 1999 to finalize this project:

1. The First International Nomenclature Conference for Pediatric Cardiac Surgery, Chicago, IL, USA, September 19–20, 1998;
   
2. The Second International Nomenclature Conference for Pediatric Cardiac Surgery, San Antonio, TX, USA, January 23, 1999;
   
3. The Spring Meeting of the European Congenital Heart Surgeons Foundation, Rome, Italy, April 10, 1999;
   
4. The Third International Nomenclature Conference for Pediatric Cardiac Surgery, New Orleans, LA, USA, April 23, 1999;
   
5. The International Nomenclature for Pediatric Cardiac Surgery Subcommittee Meeting, Orlando, FL, USA, August 14–15, 1999;
   
6. The Congenital Heart Surgery Business Meeting of the European Association for Cardiothoracic Surgery, 13th Annual Meeting of the EACTS, Glasgow, Scotland, UK, September 5–8, 1999;
   
7. The Subcommittee Meeting of the International Nomenclature for Pediatric Cardiac Surgery Advisory Editorial Committee at the 9th Annual Farouk S. Idriss, M.D. Lecture, Chicago, IL, USA, October 1–2, 1999.
   

The aim of this cooperative committee was to create an International Language for CHD that fulfills the following requirements:

being simple, limited and exclusive;

complete;

usable by surgeons and cardiologists;

including: cardiac surgery, lung surgery, ECMO procedures, arrhythmia procedures;

respecting all published classification;

providing synonyms for similar items.

The EACTS has decided to use for its data base the minimum data set which, in most cases, stems from the first or second level of hierarchy of the STS comprehensive data set. This minimum data set and short lists form the International Nomenclature for CHD Surgery.

3. How to use the International Nomenclature

The Nomenclature includes five main lists to be respected:

a minimum data set of 21 mandatory items and seven optional items (Table 1);

a list of 150 diagnoses (Table 2);

a list of 200 procedures (Table 3);

a list of 32 complications (Table 4);

a list of 28 extra cardiac anomalies and preoperative risk factors (Table 5).

the patient has been discharged from the hospital after the operation;

30 days have passed since the operation.

Operative mortality designates any death occurring during the period of data collection, regardless of whether or not the mortality is related to surgery.

4. The Pediatric European Cardiac Surgical Registry (ECSUR)

The CHD Committee of the EACTS has decided in Glasgow that the Congenital Heart Surgery Data Base will be hosted by Dr Bohdan Maruszewski in Warsaw, Poland, under the authority of the Data Base Committee of the EACTS in compliance with the requirement of the ECSUR project. The EACTS pediatric data base is named the Pediatric European Cardiac Surgical Registry (ECSUR) and is available at http://www.pediatric.ecsur.org. A simplified Data Base software using the new International Nomenclature, that has been developed under the auspices of the ECHSF (Appendix B), can be downloaded free of charge at http://www.pediatric.ecsur.org since December 1999 so that the data collection can start in 2000. European centers performing pediatric cardiac surgery are expected to register to the ECSUR pediatric program and send their data.

As The Pediatric ECSUR Data Base is equipped with a widely compatible system, other software respecting the International Nomenclature can also be used, provided that it strictly respects the minimal data set of the International Nomenclature as it appears at the Pediatric ECSUR web site.

5. Mapping with other existing coding

The Association for European Pediatric Cardiology (AEPC) has published its own coding [2]. A joint committee from the EACTS and the AEPC will develop a mapping system to allow connections between the two data bases.

6. Collection of validated data and evaluation of quality of care

Validation of true data on a large scale is a challenging task. Complete and true data imply an ethical belief and probably ‘a validation’ committee inside the EACTS that will be in charge of inspecting locally the quality and the exactness of the data sent to the Pediatric ECSUR. However, studies on clinical research require explorative aspects that cannot be coded in an exclusive coding. Such research is better achieved in limited groups of work and requires a more comprehensive coding. Evaluation of quality of care is a final goal that the EACTS envisions for the future. In this regard, a committee for definition of Stratification Risk in Congenital Heart Surgery, attached to the CHD Committee, will soon be created.

7. Conclusion

The outcome of an International Nomenclature for Congenital Heart Surgery is an important event for the Medical Community in charge of treating patients with Congenital Heart Diseases. It represents an important first step on the long way towards collection of validated data.

Appendix A. Committee of International Nomenclature and Data Base for Congenital Heart Surgery at the Society of Thoracic Surgeons

Carl L. Backer, M.D.,

Chicago, IL, USA

Redmond P. Burke, M.D.,

Miami, FL, USA

Duke Cameron, M.D.

, Baltimore, MD, USA

Andrew D. Cochrane F.R.A.C.S.,

Melbourne, Australia

Victor F. Chu, M.D.,

Montreal, Canada

Gordon Danielson, M.D.,

Rochester, MN, USA

Barbara J. Deal, M.D.,

Chicago, IL, USA

Joseph A. Dearani, M.D.,

Rochester, MN, USA

Ralph Delius, M.D.,

Davis, CA, USA

Martin J. Elliott, M.D., F.R.C.S.,

London, UK

J. William Gaynor, M.D.,

Philadelphia, PA, USA

René Herlong, M.D.,

Durham, NC, USA

Andreas Hoschtitzky, M.D.,

London, UK

Jeffrey Jacobs, M.D.,

St. Petersburg, FL, USA

Marshall L. Jacobs, M.D.,

Philadelphia, PA, USA

James Jaggers, M.D.,

Durham, NC, USA

Tom R. Karl, M.D.,

Melbourne, Australia

François Lacour-Gayet, M.D.,

Paris, France

John J. Lamberti, M.D.,

San Diego, CA, USA

Bohdan Maruszewski, M.D.,

Warsaw, Poland

Constantine Mavroudis, M.D.,

Chicago, IL, USA

John E. Mayer Jr., M.D.,

Boston, MA, USA

John L. Myers, M.D.,

Hershey, PA, USA

Khanh H. Nguyen, M.D.,

New York, NY, USA

James A. Quintessenza, M.D.,

St. Petersburg, FL, USA

W. Steves Ring, M.D.,

Dallas, TX, USA

Albert P. Rocchini, M.D.,

Ann Arbor, MI, USA

Natalie Roy, M.D.,

Montreal, Canada

Robert M. Sade, M.D.,

Charleston, SC, USA

Thomas L. Spray, M.D.,

Philadelphia, PA, USA

Jaroslav Stark, M.D.,

London, UK

Steven A. Tahta,

Montreal, Canada

Christo I. Tchervenkov, M.D.,

Montreal, Canada

Ross M. Ungerleider, M.D.,

Durham, NC, USA

Henry L. Walters, M.D.,

Detroit, MI, USA

Paul Weinberg, M.D.,

Philadelphia, PA, USA

James L. Wilkinson, M.D.,

Melbourne, Australia

Appendix B. European Congenital Heart Surgeons Foundation (ECHSF)

Hakan Berggren,

Goteborg, Sweden

William J. Brawn,

Birmingham, UK

Thierry Carrel,

Bern, Switzerland

Juan V. Comas,

Madrid, Spain

Antonio F. Corno,

Lausanne, Switzerland

Giancarlo Crupi,

Bergamo, Italy

Duccio Di Carlo,

Roma, Italy

Tjark Ebels,

Groningen, The Netherlands

Martin J. Elliott,

London, UK

Siegfried Hagl,

Heidelberg, Germany

Vladimir Ilyn,

Moscow, Russia

François Lacour-Gayet,

Paris, France

Harald L. Lindberg,

Oslo, Norway

Bohdan Maruzewski,

Warsaw, Poland

Gösta Pettersson,

Cleveland, OH, USA

Jean Rubay,

Brussels, Belgium

Heikki Sairanen,

Helsinki, Finland

Babulal Sethia,

London, UK

Aram K. Smolinsky,

Tel-Hashomer, Israel

Giovanni Stellin,

Padova, Italy

Andreas Urban,

St. Augustin, Germany

Pascal Vouhé,

Paris, France

Carin Von Doorn,

Leeds, UK

Alfred E. Wood,

Dublin, Ireland

Gerhard Ziemer,

Tubingen, Germany

References

1. Mavroudis C., Jacobs J.P. Congenital heart surgery nomenclature and data base project: introduction and overview. Ann Thorac Surg 2000;69:S1-S372.[Free Full Text]
2. Franklin R.C.G., Anderson R.H., Daniels O., Elliott M., Gewillig M., Ghisla R., Krogmann O.N., Ulmer H.E., Stocker F.P. Report of the Coding Committee of the Association for European Pediatric Cardiology. Cardiol Young 1999;9:633-665.[Medline]

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This Article Abstract Full Text (PDF) Alert me when this article is cited Alert me if a correction is posted Citation Map Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to Personal Folders Download to citation manager Author home page(s): François Lacour-Gayet Bohdan Maruszewski Constantine Mavroudis Jeffrey P. Jacobs Martin J. Elliott Permission Requests Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Lacour-Gayet, F. Articles by Elliott, M. J. Search for Related Content PubMed PubMed Citation Articles by Lacour-Gayet, F. Articles by Elliott, M. J.