Journal article
Nomenclature and databases for the surgical treatment of congenital cardiac disease - an updated primer and an analysis of opportunities for improvement
Cardiology in the young, v 18(S2), pp 38-62
01 Dec 2008
PMID: 19063775
Featured in Collection : UN Sustainable Development Goals @ Drexel
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.
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Details
- Title
- Nomenclature and databases for the surgical treatment of congenital cardiac disease - an updated primer and an analysis of opportunities for improvement
- Creators
- Jeffrey Phillip Jacobs - College Station Medical CenterMarshall Lewis Jacobs - Drexel UniversityConstantine Mavroudis - Northwestern UniversityCarl Lewis Backer - Northwestern Univ, Childrens Mem Hosp, Feinberg Sch Med, Chicago, IL 60614 USAFrancois G. Lacour-Gayet - College Station Medical CenterChristo I. Tchervenkov - McGill UniversityRodney C. G. Franklin - Royal Brompton & Harefield NHS Trust, Paediat Cardiol Directorate, Harefield, Middx, EnglandMarie J. Beland - McGill UniversityKathy J. Jenkins - Harvard UniversityHal WaltersEmile A. Bacha - Wayne State UniversityBohdan Maruszewski - Mécanique et Engrenage ModerneHiromi Kurosawa - College Station Medical CenterDavid Robinson Clarke - College Station Medical CenterJ. William GaynorThomas L. SprayGiovanni Stellin - University of PaduaTjark Ebels - University of GroningenOtto N. Krogmann - Heart Ctr Duisburg, Paediat Cardiol CHD, Duisburg, GermanyVera D. Aiello - College Station Medical CenterSteven D. Colan - Harvard UniversityPaul Weinberg - Univ Penn, Childrens Hosp Philadelphia, Div Pediat Cardiol, Philadelphia, PA 19104 USAJorge M. Giroud - College Station Medical CenterAllen Everett - Johns Hopkins UniversityGil Wernovsky - Childrens Hosp Philadelphia, Div Pediat Cardiol, Philadelphia, PA USAMartin J. Elliott - OrmondFred H. Edwards - Univ Florida, Gainesville, FL USA
- Publication Details
- Cardiology in the young, v 18(S2), pp 38-62
- Publisher
- Cambridge Univ Press
- Number of pages
- 25
- Grant note
- Children's Heart Foundation
- Resource Type
- Journal article
- Language
- English
- Web of Science ID
- WOS:000266381300002
- Scopus ID
- 2-s2.0-63849196593
- Other Identifier
- 991021901413404721
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- Collaboration types
- Domestic collaboration
- International collaboration
- Web of Science research areas
- Cardiac & Cardiovascular Systems
- Pediatrics