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

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

Published online by Cambridge University Press:  01 December 2008

Kathy J. Jenkins ,
Robert H. Beekman III ,
Lisa J. Bergersen ,
Allen D. Everett ,
Thomas J. Forbes ,
Rodney C. G. Franklin ,
Thomas S. Klitzner ,
Otto N. Krogman ,
Gerard R. Martin  and
Catherine L. Webb
Kathy J. Jenkins*
Affiliation:
Department of Cardiology, Children’s Hospital Boston, Boston, Massachusetts, United States of America
Robert H. Beekman III
Affiliation:
Division of Cardiology, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, United States of America
Lisa J. Bergersen
Affiliation:
Department of Cardiology, Children’s Hospital Boston, Boston, Massachusetts, United States of America
Allen D. Everett
Affiliation:
Pediatric Cardiology, Johns Hopkins University, Baltimore, Maryland, United States of America
Thomas J. Forbes
Affiliation:
Division of Cardiology, Children’s Hospital of Michigan/Wayne State University, Detroit, Michigan, United States of America
Rodney C. G. Franklin
Affiliation:
Paediatric Cardiology Directorate, Royal Brompton & Harefield NHS Trust, Harefield, Middlesex, United Kingdom
Thomas S. Klitzner
Affiliation:
Division of Pediatric Cardiology, Mattel Children’s Hospital at UCLA, Los Angeles, California, United States of America
Otto N. Krogman
Affiliation:
Paediatric Cardiology – CHD, Heart Center Duisburg, Duisburg, Germany
Gerard R. Martin
Affiliation:
Division of Cardiology, Children’s National Medical Center, Washington District of Columbia, United States of America
Catherine L. Webb
Affiliation:
Division of Pediatric Cardiology, Children’s Memorial Hospital, Northwestern University Feinberg School of Medicine, Chicago, Illinois, United States of America
*
Correspondence to: Kathy J. Jenkins, MD MPH, Department of Cardiology, Children’s Hospital, 300 Longwood Avenue, Boston, Massachusetts 02115, United States of America. Tel: 617 355 7275; Fax: 617 739 5022; E-mail: Kathy.jenkins@childrens.harvard.edu
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Abstract

This review includes a brief discussion, from the perspective of the pediatric cardiologist, of the rationale for creation and maintenance of multi-institutional databases of outcomes of the treatment of patients with congenital and paediatric cardiac disease, together with a history of the evolution of such databases, and a description of the current state of the art. A number of projects designed to have broad-based impact are currently in the design phase, or have already been implemented. Not surprisingly, most of the efforts thus far have focused on catheterization procedures and interventions, although some work examining other aspects of paediatric cardiology practice is also beginning. This review briefly describes several European and North American initiatives related to databases for pediatric and congenital cardiology including the Central Cardiac Audit Database of the United Kingdom, national database initiatives for pediatric cardiology in Switzerland and Germany, various database initiatives under the leadership of the Working Groups of The Association for European Paediatric Cardiology, the IMPACT Registry™ (IMproving Pediatric and Adult Congenital Treatment) of the National Cardiovascular Data Registry® of The American College of Cardiology Foundation® and The Society for Cardiovascular Angiography and Interventions (SCAI), the Mid-Atlantic Group of Interventional Cardiology (MAGIC) Catheterization Outcomes Project, the Congenital Cardiac Catheterization Project on Outcomes (C3PO), the Congenital Cardiovascular Interventional Study Consortium (CCISC), and the Joint Council on Congenital Heart Disease (JCCHD) National Quality Improvement Initiative. These projects, each leveraging multicentre data and collaboration, demonstrate the enormous progress that has occurred over the last several years to improve the quality and consistency of information about nonsurgical treatment for congenital cardiac disease. The paediatric cardiology field is well-poised to move quickly beyond outcome assessment and benchmarking, to collaborative quality improvement.

Keywords

Congenital heart diseasequality improvementpatient safetycomplicationscardiology 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. 116 - 123
Copyright
Copyright © Cambridge University Press 2008

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