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Eur J Cardiothorac Surg 2002;21:47-49
© 2002 Elsevier Science NL
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a Cardiac Surgery, Memorial Hospital Child's Health Centre, Warsaw, Poland
b Cardiac Surgery, Universitäts-Krankenhaus Eppendorf, Hamburg, Germany
c Cardiothoracic Surgery, Hospital for Sick Children, Great Ormond Street, London, UK
d Division of Pediatric Cardiothoracic Surgery, The Cardiac Center at The Children's Hospital of Philadelphia, Philadelphia, PA, USA
e Division of Thoracic and Cardiovascular Surgery, All Children's Hospital, University of South Florida College of Medicine, St. Petersburg, FL, USA
f Section of Cardiothoracic Surgery, St. Christopher's Hospital for Children, Philadelphia, PA, USA
g Cardiac Surgery, Montreal Children's Hospital, Montreal, Québec, Canada
h Cardiovascular Surgery, Jikei University School of Medicine, Tokyo, Japan
i Department of Surgery, Division of Cardiovascular-Thoracic Surgery, Northwestern University Medical School, Children's Memorial Hospital, Chicago, IL, USA
Received 27 September 2001; accepted 2 November 2001.
* Corresponding author. Tel.: +1-773-880-4378; fax: +1-773-880-3054
e-mail: cmavroudis{at}childrensmemorial.org
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Abstract |
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Key Words: Society of Thoracic Surgery • Database • Heart surgery
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Introduction |
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In April 2000, the first report of the International Congenital Heart Surgery Nomenclature Database Project was published as a supplement of the Annals of Thoracic Surgery [3]. The manuscripts in this report reviewed the existing nomenclatures for congenital heart diagnoses and made recommendations for an inclusive rather than exclusive method of reporting. Two datasets for an international congenital heart surgery database were proposed: a minimal and a comprehensive dataset. The comprehensive dataset was designed to allow detailed categorization of congenital heart defects and operative procedures. The comprehensive dataset also provides the capability of extensive reporting of preoperative and postoperative variables to allow for outcomes analysis and risk stratification. The minimal dataset was designed to create an essential dataset that would be mandatory for inter-institutional data sharing and would allow elucidation of basic trends. Since the original publication, there have been several additions to the minimal dataset, as well as the diagnoses and procedure short lists (Table 1). The final minimal database dataset is comprised of 38 items (25 mandatory, 13 optional) (Appendices 1–2). Four short lists have been defined for: (1) non-cardiac abnormalities/general preoperative risk factors; (2) diagnoses; (3) procedures; and (4) complications, from which an appropriate entry can be chosen (Appendices 3–6). The minimal data entry form is described in Appendix 1 and presented in Appendix 2. The final version of the minimal dataset, as well as the short lists and modifications have been approved by the STS Congenital Heart Surgery Committee and the EACTS Congenital Heart Surgery Committee [4], as well as the ECHSF [3,4]. The appendices can be viewed at www.ctsnet.org/doc/5357.
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Registration information can also be obtained at the Pediatric ECSUR website (http://www.ecsur.ic.ac.uk).
The Association of European Pediatric Cardiologists (AEPC) has independently proposed a diagnostic hierarchy for congenital heart defects, which was published in Cardiology in the Young [5]. Representatives of the AEPC, STS, EACTS, and ECHSF met during the October 2000 meeting of the EACTS in Frankfurt, Germany to discuss future collaboration. An agreement was reached for a joint committee with members from the International Congenital Heart Surgery Nomenclature and Database Project with representatives of the STS, EACTS, and ECHSF, and representatives of the AEPC, to establish a system to reconcile and map the two coding systems. The initial step is defining equivalent diagnoses and procedures in the short lists that are used for the minimal dataset. To ensure that each diagnosis and procedure in one system can be mapped to an equivalent, it will be necessary to add terms. For example, the AEPC hierarchy contains coding for interventional cardiology procedures in greater detail than the STS, EACTS, ECHSF coding. Considerable progress has been made in merging the two coding systems.
A progress report was presented at the Third World Congress of Pediatric Cardiology and Cardiac Surgery in Toronto. At the Third World Congress, on May 27, 2001, an International Summit on Nomenclature for Congenital Heart Disease was held. Representatives from Surgical and Cardiology Societies throughout the world participated in this Summit including the AEPC, the EACTS, the ECHSF, and the STS, as well as the American College of Cardiology, the Asian Society of Cardiovascular Surgery, the Canadian Cardiovascular Society, the Cardiology Subsection of the American Academy of Pediatrics, and the Council on Cardiovascular Disease in the Young of the American Heart Association. Additional participants included representatives from Australia, India and South America.
The almost simultaneous publication of the EACTS/STS coding system [3] (http://www.ctsnet.org/doc/3699) and the AEPC coding system [5] (http://www.aepc.org/code-com.htm) resulted in the potential for multiple coding and a great deal of confusion. Both coding systems exist in short and long code forms. Each was designed with a common purpose, but for users with different needs (AEPC – cardiologists, EACTS/STS – surgeons). At the International Summit on Nomenclature for Congenital Heart Disease, it was agreed that these two diagnostic hierarchies are complementary and not competitive. A mapping of the short lists between the two systems was approved. It was also agreed that an international effort should continue with the goal of mapping the long lists and creating a single nomenclature ‘super tree’ utilizing the mapped long lists. The goal is to create this mapped long list by the next World Congress in 4 years. An international committee made up of representatives of all of the above organizations and other interested parties has been established to achieve this goal. Centers and individuals interested in participating in this project should contact the committee chairman:
Martin Elliott, M.D., F.R.C.S, Consultant Cardiothoracic Surgery, The Great Ormond Street Hospital for Children, London WCIN3JH. Tel.: +44-02-7829-8853/fax: +44-02-7813-8262, E-mail: ellioml@gosh.nhs.uk
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