Completeness and registration bias in PROCARE, a Belgian multidisciplinary project on cancer of the rectum with participation on a voluntary basis.
Details
Serval ID
serval:BIB_E49A22032624
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Completeness and registration bias in PROCARE, a Belgian multidisciplinary project on cancer of the rectum with participation on a voluntary basis.
Journal
European Journal of Cancer (oxford, England : 1990)
Contributor(s)
PROCARE , Bertrand C., De Coninck D., Duinslaeger M., Kartheuser A., Penninckx F., Van de Stadt J., Vaneerdeweg W., Claeys D., Burnon D., Haustermans K., Scalliet P., Spaas P., Demetter P., Jouret-Mourin A., Sempoux C., Demey W., Humblet Y., Van Cutsem E., Laurent S., Van Cutsem E., Van Laethem J., Op de Beeck B., Smeets P., Melange M., Rahier J., Cabooter M., Pattyn P., Peeters M., Buset M., Mansvelt B., Vindevoghel K., Van Eycken E., Daubie M., Thijs A., Penninckx F.
ISSN
1879-0852 (Electronic)
ISSN-L
0959-8049
Publication state
Published
Issued date
2015
Peer-reviewed
Oui
Volume
51
Number
9
Pages
1099-1108
Language
english
Notes
Publication types: Journal Article ; Research Support, Non-U.S. Gov'tPublication Status: ppublish
Abstract
BACKGROUND: PROCARE, a Belgian multidisciplinary project on rectal cancer, started in 2006 with participation on a voluntary basis. Completeness and bias of registration in PROCARE were assessed.
METHODS: Data from 6353 patients with rectal cancer were extracted from the population based Belgian Cancer Registry for the period 2006-2008. Registration bias was studied by comparing patient, tumour and treatment characteristics of cases registered and non-registered in PROCARE. Relative survival (RS) of patient subgroups was analysed.
RESULTS: PROCARE included 37% of all Belgian rectal cancer patients. Registration was highly variable between participating centres which recorded on average 56% of their patients. Significant differences in patient, tumour and treatment related characteristics were observed between registered and non-registered patients. The 5-year RS was 77% (95% confidence interval (CI): 74-80%) for registered patients and 56% (95% CI: 53-59%) for non-registered patients. After adjustment for patient, tumour characteristics and volume of centre, the relative excess risk of dying (RER) between registered and non-registered patients was 2.15 (95% CI: 1.85-2.50, p<0.001). The 5-year RS of patients treated in centres that never participated in the project was 59% (95% CI: 55-63%) and, after adjustment, the RER was 1.16 (95% CI: 1.00-1.35, p<0.050) compared to patients of the participating centres.
CONCLUSION: Registration of PROCARE patient data was incomplete, biased and variable between centres. Participation on a voluntary basis should be avoided for further projects. Quality assurance on a centre level requires compulsory and complete registration with a minimal but relevant data set for all patients treated in all centres.
METHODS: Data from 6353 patients with rectal cancer were extracted from the population based Belgian Cancer Registry for the period 2006-2008. Registration bias was studied by comparing patient, tumour and treatment characteristics of cases registered and non-registered in PROCARE. Relative survival (RS) of patient subgroups was analysed.
RESULTS: PROCARE included 37% of all Belgian rectal cancer patients. Registration was highly variable between participating centres which recorded on average 56% of their patients. Significant differences in patient, tumour and treatment related characteristics were observed between registered and non-registered patients. The 5-year RS was 77% (95% confidence interval (CI): 74-80%) for registered patients and 56% (95% CI: 53-59%) for non-registered patients. After adjustment for patient, tumour characteristics and volume of centre, the relative excess risk of dying (RER) between registered and non-registered patients was 2.15 (95% CI: 1.85-2.50, p<0.001). The 5-year RS of patients treated in centres that never participated in the project was 59% (95% CI: 55-63%) and, after adjustment, the RER was 1.16 (95% CI: 1.00-1.35, p<0.050) compared to patients of the participating centres.
CONCLUSION: Registration of PROCARE patient data was incomplete, biased and variable between centres. Participation on a voluntary basis should be avoided for further projects. Quality assurance on a centre level requires compulsory and complete registration with a minimal but relevant data set for all patients treated in all centres.
Keywords
Aged, Aged, 80 and over, Belgium/epidemiology, Bias (Epidemiology), Databases, Factual/standards, Databases, Factual/statistics & numerical data, Disclosure, Female, Humans, Interdisciplinary Communication, Male, Middle Aged, Patient Participation/methods, Patient Participation/statistics & numerical data, Quality Control, Rectal Neoplasms/epidemiology, Registries/standards, Volunteers
Pubmed
Web of science
Create date
20/10/2016 16:39
Last modification date
20/08/2019 17:08
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