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Nomenclature and databases for the surgical treatment of congenital cardiac disease – an updated primer and an analysis of opportunities for improvement

Published online by Cambridge University Press:  01 December 2008

Jeffrey Phillip Jacobs
Affiliation:
The Congenital Heart Institute of Florida (CHIF), Division of Thoracic and Cardiovascular Surgery, All Children’s Hospital and Children’s Hospital of Tampa, University of South Florida College of Medicine, Cardiac Surgical Associates (CSA), Saint Petersburg and Tampa, Florida, United States of America
Marshall Lewis Jacobs
Affiliation:
Drexel University College of Medicine, Philadelphia, Pennsylvania, United States of America
Constantine Mavroudis
Affiliation:
Children’s Memorial Hospital, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States of America
Carl Lewis Backer
Affiliation:
Children’s Memorial Hospital, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States of America
Francois G. Lacour-Gayet
Affiliation:
The Children’s Hospital, University of Colorado School of Medicine, Denver, Colorado, United States of America
Christo I. Tchervenkov
Affiliation:
Division of Pediatric Cardiovascular Surgery, The Montreal Children’s Hospital of the McGill University Health Centre, Montréal, Quebec, Canada
Rodney C. G. Franklin
Affiliation:
Paediatric Cardiology Directorate, Royal Brompton & Harefield NHS Trust, Harefield, Middlesex, United Kingdom
Marie J. Béland
Affiliation:
Division of Pediatric Cardiology, The Montreal Children’s Hospital of the McGill University Health Centre, Montréal, Quebec, Canada
Kathy J. Jenkins
Affiliation:
Department of Cardiology, Children’s Hospital Boston, Harvard Medical School, Boston, Massachusetts, United States of America
Hal Walters III
Affiliation:
Cardiac Surgery, Children’s Hospital Boston, Harvard Medical School, Boston, Massachusetts, United States of America
Emile A. Bacha
Affiliation:
Children’s Hospital of Michigan, Wayne State University School of Medicine, Detroit, Michigan, United States of America
Bohdan Maruszewski
Affiliation:
The Children’s Memorial Health Institute, Department of Cardiothoracic Surgery, Warsaw, Poland
Hiromi Kurosawa
Affiliation:
Cardiovascular Surgery, Heart Institute of Japan, Tokyo Women’s Medical University, Tokyo, Japan
David Robinson Clarke
Affiliation:
The Children’s Hospital, University of Colorado School of Medicine, Denver, Colorado, United States of America
J. William Gaynor
Affiliation:
Cardiac Surgery, Children’s Hospital of Philadelphia, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America
Thomas L. Spray
Affiliation:
Cardiac Surgery, Children’s Hospital of Philadelphia, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America
Giovanni Stellin
Affiliation:
Pediatric Cardiac Surgery Unit – University of Padova Medical School, Padova, Italy
Tjark Ebels
Affiliation:
Groningen University Medical Centre, Groningen, The Netherlands
Otto N. Krogmann
Affiliation:
Paediatric Cardiology – CHD, Heart Center Duisburg, Duisburg, Germany
Vera D. Aiello
Affiliation:
Heart Institute (InCor), Sao Paulo University School of Medicine, Sao Paulo, Brazil
Steven D. Colan
Affiliation:
Department of Cardiology, Children’s Hospital, Harvard Medical School, Boston, Massachusetts, United States of America
Paul Weinberg
Affiliation:
Division of Pediatric Cardiology, The Children’s Hospital of Philadelphia, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America
Jorge M. Giroud
Affiliation:
The Congenital Heart Institute of Florida, Division of Pediatric Cardiology, All Children’s Hospital and Children’s Hospital of Tampa, University of South Florida College of Medicine, Pediatric Cardiology Associates, Saint Petersburg and Tampa, Florida, United States of America
Allen Everett
Affiliation:
Pediatric Cardiology, Johns Hopkins University, Baltimore, Maryland, United States of America
Gil Wernovsky
Affiliation:
Divisions of Pediatric Cardiology and Critical Care Medicine, The Children’s Hospital of Philadelphia, Pennsylvania, United States of America
Martin J. Elliott
Affiliation:
Cardiac Unit, Great Ormond Street Hospital for Children, London, United Kingdom
Fred H. Edwards
Affiliation:
The University of Florida, Gainesville and Jacksonville, Florida, United States of America
Corresponding
E-mail address:

Abstract

This review discusses the historical aspects, current state of the art, and potential future advances in the areas of nomenclature and databases for the analysis of outcomes of treatments for patients with congenitally malformed hearts. We will consider the current state of analysis of outcomes, lay out some principles which might make it possible to achieve life-long monitoring and follow-up using our databases, and describe the next steps those involved in the care of these patients need to take in order to achieve these objectives. In order to perform meaningful multi-institutional analyses, we suggest that any database must incorporate the following six essential elements: use of a common language and nomenclature, use of an established uniform core dataset for collection of information, incorporation of a mechanism of evaluating case complexity, availability of a mechanism to assure and verify the completeness and accuracy of the data collected, collaboration between medical and surgical subspecialties, and standardised protocols for life-long follow-up.

During the 1990s, both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons created databases to assess the outcomes of congenital cardiac surgery. Beginning in 1998, these two organizations collaborated to create the International Congenital Heart Surgery Nomenclature and Database Project. By 2000, a common nomenclature, along with a common core minimal dataset, were adopted by The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons, and published in the Annals of Thoracic Surgery. In 2000, The International Nomenclature Committee for Pediatric and Congenital Heart Disease was established. This committee eventually evolved into the International Society for Nomenclature of Paediatric and Congenital Heart Disease. The working component of this international nomenclature society has been The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease, also known as the Nomenclature Working Group. By 2005, the Nomenclature Working Group crossmapped the nomenclature of the International Congenital Heart Surgery Nomenclature and Database Project of The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons with the European Paediatric Cardiac Code of the Association for European Paediatric Cardiology, and therefore created the International Paediatric and Congenital Cardiac Code, which is available for free download from the internet at [http://www.IPCCC.NET].

This common nomenclature, the International Paediatric and Congenital Cardiac Code, and the common minimum database data set created by the International Congenital Heart Surgery Nomenclature and Database Project, are now utilized by both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons. Between 1998 and 2007 inclusive, this nomenclature and database was used by both of these two organizations to analyze outcomes of over 150,000 operations involving patients undergoing surgical treatment for congenital cardiac disease.

Two major multi-institutional efforts that have attempted to measure the complexity of congenital heart surgery are the Risk Adjustment in Congenital Heart Surgery-1 system, and the Aristotle Complexity Score. Current efforts to unify the Risk Adjustment in Congenital Heart Surgery-1 system and the Aristotle Complexity Score are in their early stages, but encouraging. Collaborative efforts involving The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons are under way to develop mechanisms to verify the completeness and accuracy of the data in the databases. Under the leadership of The MultiSocietal Database Committee for Pediatric and Congenital Heart Disease, further collaborative efforts are ongoing between congenital and paediatric cardiac surgeons and other subspecialties, including paediatric cardiac anaesthesiologists, via The Congenital Cardiac Anesthesia Society, paediatric cardiac intensivists, via The Pediatric Cardiac Intensive Care Society, and paediatric cardiologists, via the Joint Council on Congenital Heart Disease and The Association for European Paediatric Cardiology.

In finalising our review, we emphasise that analysis of outcomes must move beyond mortality, and encompass longer term follow-up, including cardiac and non cardiac morbidities, and importantly, those morbidities impacting health related quality of life. Methodologies must be implemented in these databases to allow uniform, protocol driven, and meaningful, long term follow-up.

Type
Original Article
Copyright
Copyright © Cambridge University Press 2008

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Nomenclature and databases for the surgical treatment of congenital cardiac disease – an updated primer and an analysis of opportunities for improvement
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Nomenclature and databases for the surgical treatment of congenital cardiac disease – an updated primer and an analysis of opportunities for improvement