Completeness and selection bias of a Belgian multidisciplinary, registration-based study on the EFFectiveness and quality of Endometrial Cancer Treatment (EFFECT).
Vanbraband, Joren; Van Damme, Nancy; Bouche, Gauthieret al.
Cancer registration; Completeness; Corpus uteri cancer; EFFECT; Endometrial cancer; Selection bias; Belgium/epidemiology; Bias; Female; Humans; Selection Bias; Endometrial Neoplasms/epidemiology; Endometrial Neoplasms/therapy; Uterine Neoplasms/epidemiology; Uterine Neoplasms/therapy; Belgium; Endometrial Neoplasms; Uterine Neoplasms; Oncology; Genetics; Cancer Research
Abstract :
[en] [en] BACKGROUND: With the aim of obtaining more uniformity and quality in the treatment of corpus uteri cancer in Belgium, the EFFECT project has prospectively collected detailed information on the real-world clinical care offered to 4063 Belgian women with primary corpus uteri cancer. However, as data was collected on a voluntary basis, data may be incomplete and biased. Therefore, this study aimed to assess the completeness and potential selection bias of the EFFECT database.
METHODS: Five databases were deterministically coupled by use of the patient's national social security number. Participation bias was assessed by identifying characteristics associated with hospital participation in EFFECT, if any. Registration bias was assessed by identifying patient, tumor and treatment characteristics associated with patient registration by participating hospitals, if any. Uni- and multivariable logistic regression were applied.
RESULTS: EFFECT covers 56% of all Belgian women diagnosed with primary corpus uteri cancer between 2012 and 2016. These women were registered by 54% of hospitals, which submitted a median of 86% of their patients. Participation of hospitals was found to be biased: low-volume and Walloon-region centers were less likely to participate. Registration of patients by participating hospitals was found to be biased: patients with a less favorable risk profile, with missing data for several clinical-pathological risk factors, that did not undergo curative surgery, and were not discussed in a multidisciplinary tumor board were less likely to be registered.
CONCLUSIONS: Due to its voluntary nature, the EFFECT database suffers from a selection bias, both in terms of the hospitals choosing to participate and the patients being included by participating institutions. This study, therefore, highlights the importance of assessing the selection bias that may be present in any study that voluntarily collects clinical data not otherwise routinely collected. Nevertheless, the EFFECT database covers detailed information on the real-world clinical care offered to 56% of all Belgian women diagnosed with corpus uteri cancer between 2012 and 2016, and may therefore act as a powerful tool for measuring and improving the quality of corpus uteri cancer care in Belgium.
Disciplines :
Oncology
Author, co-author :
Vanbraband, Joren; Biomedical Sciences Group, Department of Oncology, Unit of Gynecological Oncology, KU Leuven, ON4 Herestraat 49, box 1045, 3000, Leuven, Belgium
Van Damme, Nancy; Belgian Cancer Registry, Koningsstraat 215, box 7, 1210, Brussels, Belgium
Bouche, Gauthier; The Anticancer Fund, Brusselsesteenweg 11, 1860, Meise, Belgium
Silversmit, Geert; Belgian Cancer Registry, Koningsstraat 215, box 7, 1210, Brussels, Belgium
De Geyndt, Anke; Belgian Cancer Registry, Koningsstraat 215, box 7, 1210, Brussels, Belgium
de Jonge, Eric; Department of Obstetrics and Gynecology, Ziekenhuis Oost-Limburg, Campus Sint-Jan, Schiepse Bos 6, 3600, Genk, Belgium
Jacomen, Gerd; Laboratory of Pathological Anatomy, AZ Sint-Maarten, Liersesteenweg 435, 2800, Mechelen, Belgium
Goffin, Frédéric ; Centre Hospitalier Universitaire de Liège - CHU > > Service de gynécologie-obstétrique (CHR) ; Department of Obstetrics and Gynecology, CHR de La Citadelle, Boulevard du 12ème de Ligne 1, 4000, Liège, Belgium
Denys, Hannelore; Department of Medical Oncology, University Hospital Ghent, Corneel Heymanslaan 10, 9000, Ghent, Belgium
Amant, Frédéric; Biomedical Sciences Group, Department of Oncology, Unit of Gynecological Oncology, KU Leuven, ON4 Herestraat 49, box 1045, 3000, Leuven, Belgium. frederic.amant@uzleuven.be ; Department of Surgery, Netherlands Cancer Institute, Plesmanlaan 121, 1066CX, Amsterdam, The Netherlands. frederic.amant@uzleuven.be
Language :
English
Title :
Completeness and selection bias of a Belgian multidisciplinary, registration-based study on the EFFectiveness and quality of Endometrial Cancer Treatment (EFFECT).
The authors would like to thank all participating hospitals, physicians and data managers for all efforts they made in the context of EFFECT, and for their many years of active collaboration. Also thanks to the Anticancer Fund and Kom op tegen Kanker for financially supporting the EFFECT project. The authors are also grateful to all employees of the Belgian Cancer Registry involved in EFFECT, in particular Julie Verbeeck (data analyst) for her methodological and technical support in the linkage of databases. Finally, we would like to thank other members of the EFFECT steering group for their contributions to the design, execution and/or supervision of the EFFECT project: Erik Van Limbergen, Bruno Vandermeersch, Marcella Baldewijns, Mathijs Goossens, and Didier Vander Steichel.The EFFECT project was financially supported by the Anticancer Fund from 2012–2016 and is currently being funded by Kom op tegen Kanker from 2019–2023 (grant number: KotK/2018/11467/1). Through Gauthier Bouche’s employment as Director of Clinical Research, the Anticancer Fund was involved in study design and the writing of the report (i.e., review & editing). Kom op tegen Kanker had no such involvement.
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