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Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiac surgery

Part of: The International Society for Nomenclature of Paediatric and Congenital Heart Disease (ISNPCHD)

Published online by Cambridge University Press:  01 December 2008

Marshall Lewis Jacobs ,
Jeffrey Phillip Jacobs ,
Rodney C.G. Franklin ,
Constantine Mavroudis ,
Francois Lacour-Gayet ,
Christo I. Tchervenkov ,
Hal Walters III ,
Emile A. Bacha ,
David Robinson Clarke  and
J. William Gaynor
...Show all authors
Marshall Lewis Jacobs*
Affiliation:
Drexel University College of Medicine, Philadelphia, Pennsylvania, United States of America
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
Rodney C.G. Franklin
Affiliation:
Paediatric Cardiology Directorate, Royal Brompton & Harefield NHS Trust, Harefield, Middlesex, London, United Kingdom
Constantine Mavroudis
Affiliation:
Childrens Memorial Hospital, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States of America
Francois 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
Hal Walters III
Affiliation:
Children’s Hospital of Michigan, Wayne State University School of Medicine, Detroit, Michigan
Emile A. Bacha
Affiliation:
Children’s Hospital Boston, Harvard Medical School, Boston, Massachusetts, United States of America
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, Philadelphia, Pennsylvania, United States of America
Thomas L. Spray
Affiliation:
Cardiac Surgery, Children’s Hospital of Philadelphia, 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
Bohdan Maruszewski
Affiliation:
The Children’s Memorial Health Institute, Department of Cardiothoracic Surgery, Warsaw, Poland
Zdzislaw Tobota
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
Martin Elliott
Affiliation:
Cardiac Unit, Great Ormond Street Hospital for Children, London, United Kingdom
*
Correspondence to: Marshall Lewis Jacobs, MD, 6019 Goshen Road, Newtown Square, Pennsylvania 19073, United States of America. Tel: 001-610 356 2615; Fax: 001-610 356 2880; E-mail: marshall.jacobs@comcast.net
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Abstract

This review includes a brief discussion, from the perspective of cardiac surgeons, of the rationale for creation and maintenance of multi-institutional databases of outcomes of congenital heart surgery, together with a history of the evolution of such databases, a description of the current state of the art, and a discussion of areas for improvement and future expansion of the concept. Five fundamental areas are reviewed: nomenclature, mechanism of data collection and storage, mechanisms for the evaluation and comparison of the complexity of operations and stratification of risk, mechanisms to ensure the completeness and accuracy of the data, and mechanisms for expansion of the current capabilities of databases to include comparison and sharing of data between medical subspecialties. This review briefly describes several European and North American initiatives related to databases for pediatric and congenital cardiac surgery the Congenital Database of The European Association for Cardio-Thoracic Surgery, the Congenital Database of The Society of Thoracic Surgeons, the Pediatric Cardiac Care Consortium, and the Central Cardiac Audit Database in the United Kingdom. Potential means of approaching the ultimate goal of acquisition of long-term follow-up data, and input of this data over the life of the patient, are also considered.

Keywords

Congenital heart diseasequality improvementcomplexitypatient safetycomplicationssurgical outcomesregistry
Type
Original Article
Information
Cardiology in the Young , Volume 18 , Issue S2: Databases and the assessment of complications associated with the treatment of patients with congenital cardiac disease , December 2008 , pp. 101 - 115
Copyright
Copyright © Cambridge University Press 2008

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