Assurance de qualité pour le cancer rectal – phase 2 ...

78 PROCARE – phase 2 KCE reports 814.3.2.4 SpainAlso, an attempt is made to extend the dataset to incorporate extra information onother aspects of care by linking it to other routine data sources, such as radiotherapy,chemotherapy and pathology databases. However, variable amounts of information onthese aspects of care are available across the country.The National Bowel Cancer Audit Project (NBOCAP) is a collaboration between theAssociation of Coloproctologists of Great Britain and Ireland (ACPGBI) and theNational Clinical Audit Support Programme (NCASP). It is a voluntary audit andmembers of the ACPGBI can submit information about their patients to it. It is notpopulation-based and only covers about one third of the colorectal cancer patients atmost. The NBOCAP dataset has more detailed clinical information than the PROCAREdatabase (e.g. ASA grade), but unfortunately – as it is a voluntary audit – it is often veryincomplete and many key fields are missing. When comparing their data to thepopulation-based data at NYCRIS, it was found that members of the ACPGBI havesignificantly better outcomes than non-members. Therefore, using NBOCAP data as aproxy for national work may be biased as it overestimates outcomes. NYCRIS is verykeen, however, to link its data to the NBOCAP data as this would supplement thedataset with more clinical information and it would give them national coverage. Theyare actively trying to collaborate with NBOCAP to achieve this.NYCRIS is also interested to collaborate with colleagues in Dutch cancer registries, andthey suggested that a Belgian dimension could be of interest (personal communicationwith David Forman).The Spanish registry has recently been set up by professionals and the Spanish surgicalsociety. Participation is on a voluntary basis. Unfortunately, resources are lacking to payfor a data manager travelling around Spain.The database was based on an agreement between surgeons, pathologists, radiologistsand oncologists. Unfortunately, data concerning adverse effects or the use of new drugcombinations are incomplete.No unequivocal mechanism is available to check whether all participatingteams/hospitals submit their consecutive patients for registration. Hospitals willing to beincluded have to complete a questionnaire, which includes two questions about theannual case load (number of cases treated in the last 5 years, number of cases treated inthe last year). If the number of observed cases from a hospital is less than 5% of theexpected cases, all data of this hospital are excluded from the registry for that particularyear.4.3.2.5 GermanyThe population-based cancer registry Bavaria is one of the 10 regional cancer registriesin Germany (http://www.ekr.med.uni-erlangen.de/GEKID/Doc/kid2006_english.pdf). It isa classical epidemiologic cancer registry that does not provide data for benchmarking(except for non-adjusted overall survival).4.3.2.6 NorwayThe Norwegian rectal cancer registry has more or less "automatic" merges with thenational cause of death registry and all EPJ systems in Norway.4.4 DISCUSSIONA nationwide population-based database on rectal cancer has been installed and isfunctioning in Sweden, Norway, Denmark, and the UK. Participation in these registriesis compulsory. In the Netherlands, a similar database was installed only very recently(January 2008). On the other hand, regional population-based databases on patientswith rectal cancer, with participation on a voluntary basis, are available in France,Germany, and the Netherlands.Most of these databases are located in a scientific organisation, supported by theclinicians and financially supported by the government (at least in Sweden and the UK).