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

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76 PROCARE – phase 2 KCE reports volTable 60. Characteristics of international rectal cancer databases/registries.Characteristics Germany France The Netherlands * Sweden Spain UK Denmark NorwaySpecific for rectal cancer Yes Yes No, but retrievable Yes Yes No Yes YesStart of registration 1998 1976 1989 1995 2006 1970 ? 1993Registration ongoing Ongoing Ongoing Ongoing Ongoing InOngoing Ongoing OngoingdevelopmentLocation of registry Scientific Scientific Professional Professional Scientific Governmental Scientific Scientificand scientificNational or regional registry Regional Regional (2 areas) Regional National National National National NationalPercentage of population covered 76% ? ? 100% 20% 100% > 95% 100%Registration on voluntary or Voluntary Voluntary Voluntary Compulsory Voluntary Compulsory Compulsory Compulsorycompulsory basisCompleteness of patients in Yes (76%) Yes Yes (98%) Yes No Yes Yes Yesregistry checkedExclusion of some patients No No No (yes in studies) No No No No NoRisk adjustment possible (e.g. for No Yes No Yes Yes Yes Yes Partlypostoperative mortality)Frequency of follow-up update 1/year 1/ 2 years Variable 1/year 1/year In development Variable VariableFrequency of feedback 1/year Variable Variable 1/year 1/year In development Continuous 1/ 2 yearsPossibilities of benchmarking No No Yes Yes Yes Yes Yes Yes* This is a classical cancer registry, but two large scale documentation studies have been performed (1994-1997 and 2001-2004).
KCE Reports 81 PROCARE – Phase 2 774.3.2 Availability of PROCARE quality indicators in Western EuropeandatabasesIn chapter 2, quality of care indicators for the management of patients with rectalcancer have been identified. It was explored whether these QI could be compared withdata from other Western European rectal cancer databases. In view of theircharacteristics (cfr. supra), the results from Denmark, Norway, Sweden and the UK areof most interest (see appendix).It appears that benchmarking with the national and compulsory registries from Norwayand Sweden have the best potential to be explored. The Norwegian registry remarkedthat neoadjuvant short course radiotherapy as well as adjuvant chemotherapy is not(routinely) used in Norway, in contrast to Sweden. Also, the quality of TME is notregistered in Norway. Data from the Danish registry do not allow benchmarking fordisease-free survival and use of neoadjuvant or adjuvant therapy. Data from the UKwould not allow stratification of patients according to the level/location of rectal cancer.Most of the other QI are able to be compared, although some only on subsets ofpatients.The following additional information was provided at the occasion of the abovementioned questionnaire:4.3.2.1 DenmarkUntil now, the Danish Colorectal Cancer Database has been a surgical-based databasewith only basic radiological, pathological and oncological data. However, they are in theprocess of extending the database with data relevant to the PROCARE project.4.3.2.2 The NetherlandsA nationwide specific database on rectal cancer is not installed. At this moment, onlydata on rectal cancer patients in randomized trials and limited data from retrospectiveanalyses in rectal cancer are available. As of January 1st 2008, prospective dataregistration on colorectal cancer has started in 2 regions, eventually to cover the entirecountry (cfr. infra). It was proposed to the new ECCO organisational board to set up aEuropean structure preferably also including the PROCARE study (Van de Velde C.,February 2008, personal communication).The contacted persons also confirmed and specified that their regional cancer registryof the Northern Netherlands does only allow for a limited analysis of treatment quality,i.e. only for some main indicators of completeness of treatment. In the last decade twolarge documentation studies were performed which allow for more in depth analysis.The first and most extensive study was started in 1994, and is likely of limited interestfor current quality of rectal cancer care. The second study concerns patients diagnosedand treated between 2001 and 2004 and might be more relevant for this project.4.3.2.3 United KingdomThere are 8 regional cancer registries in England. Each registry collects data on allcancers diagnosed in the country and NYCRIS covers the Northern and Yorkshireregions. Each registry records the diagnosis of all cancers, but they also collect varyingamounts of additional information on treatment and stage. The national data registeredat NYCRIS are specific to colorectal cancer. Colorectal cancer specialists have lookedat patterns of care across the country in the respective databases for colorectal cancer.To do so, extracts of colorectal cancer data were taken from each cancer registry andpooled to form a national dataset. Currently, the data set covers the period of 1996 –2005 and incorporates information on about 300.000 patients. However, because of thevarying amounts of treatment information available in the different registries, patterns ofpractice in some areas of the country could not really be distinguished using the registrydata alone. Therefore, these data have been linked to a dataset known as hospitalepisode statistics which holds information about every inpatient stay in an NHS hospital.This gives information about all treatments that require a stay in an NHS hospital.
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