EACTS Congenital Database 2005
"...One of our responsibilities as physicians caring for patients with Congenital Heart Disease is to know the results of the treatment that we recommend. Our patients and their families have the right to know the risk they will encounter, and what their long term prognosis might be, with or without surgery. Knowing the results of our treatment may seem self-evident, but attaining this knowledge is a complex and time consuming process."
W.G.Williams, Toronto, Seminars in Thoracic and Cardiovascular Surgery, 2002
The continuous evaluation of quality of care has become a duty of surgical practice and the highest priority of the EACTS. This is particularly true in Congenital Heart Surgery, where adverse outcomes can be frequent due to the severity of the pathology since patient’s birth or even prenatally.
Evaluation of quality of care is a new chapter of modern medicine which follows a different rhetoric and the need to compare and measure.
The comparison and measurement of quality of care depends on four tools:
This concept was initially demonstrated and shared by both the European Congenital Heart Surgeons Association, chair - M. Elliott and STS Congenital Heart Surgery Database, chair - C.Mavroudis.
The International Congenital Heart Surgery Nomenclature and Database Project committeechaired by C. Mavroudis with representation from EACTS/STS/ECHSA met on multiple occasions (1998 – 2000) and as a summary the International Congenital Heart Surgery Nomenclature was published simultaneously in the Annals of Thoracic Surgery and the European Journal of Cardio-Thoracic Surgery, 2000.
The minimum data set and international nomenclature was adopted by STS and EACTS Congenital Databases. These two twin databases cooperate closely in developing the methodology of common outcome analysis and upgrading the minimum data set under responsibilities of J.P. Jacobs, US, Florida (STS) and B. Maruszewski, Poland, Warsaw (EACTS).
In the mean time F. Lacour-Gayet proposed the new methodology of outcome analysis and comparison of the results in CHS. The motivation behind the Aristotle Complexity Score Project was a growing frustration of Congenital Heart Surgeons over the fact that their surgical performance was being evaluated based on hospital mortality without regard for the complexity of the operation performed.
This project started in 1999 and involved 50 expert pediatric surgeons from 23 countries, representing EACTS, STS, ECHSA and CHSS. The complexity was based on the procedures (EACTS/STS International Nomenclature for CHS) and the Aristotle basic score has been included into both databases (EACTS and STS) allowing for the first time the realistic outcomes analysis by continents, countries, institutions and surgeons.
The major measures have been undertaken on both sides of the ocean to formulate the data verification protocols, to make sure that the data obtained are complete and accurate.
The EACTS Congenital Database management has completed the first verification process for year 2003. This attempt is being continued as the most important tool to obtain the scientifically proven knowledge on the outcomes of the Congenital Heart Surgery. Until now 10% of the database information (3.105 procedures) has been verified using Source Data Verification methodology.
Since March 2005 we have started the new data harvest using the new, updated International Nomenclature for CHS.
August the 1st we have provided database members with the new functionalities as National reports and Outcome Prognosis at national and institutional level. These works are being done in response to many inquiries that came over last years. All members are able now to analyze their national data and institutional data and compare them to the European figures. This should provide CT Surgeons with additional important information on the quality of care at the national level.
180 Centers from 55 countries are registered in the EACTS Congenital Database. 61 active Centers send their data continuously. So far we managed to collect the data on 30.815 procedures performed in 26.995 CHD patients including 10.244 infants and 5.992 neonates.
The Aristotle Basic Score methodology has been implemented as the tool to analyze and compare the institutional and individual surgical performances.
During the World Congress of Paediatric Cardiology and Cardiac Surgery in Buenos Aires and EACTS/ESTS Joint Meeting in Barcelona, September 2005, the major achievements in the International CHD Nomenclature and Database projects will be presented.
All CH Surgeons and Institutions are welcome to join the EACTS Congenital Database, which remains one of the biggest collection of information on the outcomes in CHS. The database membership is free of charge, available through Internet and anonymous.
Please visit our website: www.eactscongenitaldb.org and our booth No 214 at the 4TH EACTS/ESTS JOINT MEETING EXHIBITION, 24-28 September 2005, Barcelona.
Bohdan Maruszewski, MD, PhD,
Database Director
Zdzislaw Tobota, MD
Database Coordinator
