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Agreement between questionnaires and registry data on routes to diagnosis and milestone dates of the cancer diagnostic pathway

Falborg, AZ; Vedsted, P; Menon, U; Weller, D; Neal, RD; Reguilon, I; Harrison, S; ... ICBP Module 4 Working Group; + view all (2020) Agreement between questionnaires and registry data on routes to diagnosis and milestone dates of the cancer diagnostic pathway. Cancer Epidemiology , 65 , Article 101690. 10.1016/j.canep.2020.101690. Green open access

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Abstract

BACKGROUND The routes to diagnosis and the time intervals along the diagnostic pathway affect cancer outcomes. Some data on routes to diagnosis and milestone dates can be extracted from registries or databases. When this data is incomplete, inaccurate or non-existing, other data sources are needed. This study investigates the agreement between multiple data sources on routes to diagnosis and milestone dates of cancer pathway. METHODS Information on routes to diagnosis and milestone dates were compared across four data sources (cancer patients, general practitioners, cancer specialists and registries) for breast, colorectal, lung and ovarian cancers across the UK, Scandinavia, Canada and Australia. Agreement on routes to diagnosis and milestone dates was assessed by Kappa and AC1 coefficients and Lin’s concordance correlation coefficient (CCC). RESULTS 4502 patients were included in the analysis of routes to diagnosis. The agreement was almost perfect (kappa = 0.15–0.88, AC1 = 0.86–0.91) for breast cancer, substantial to almost perfect (kappa = 0.07–0.86, AC1 = 0.74–0.93) for colorectal and ovarian cancers, and substantial (kappa = 0.09–0.11, AC1 = 0.65–0.74) for lung cancer. 2287 patients were included in the analysis of milestone dates. The agreement was adequate for all cancer types (CCC = 0.88–0.99); highest agreement was seen for date of diagnosis (CCC = 0.94–0.99). CONCLUSION We found a reasonable agreement between patient/physician questionnaires and registry data for routes to diagnosis and milestone dates. The agreement on routes to diagnosis was generally higher for breast cancer than for colorectal, ovarian and lung cancers. Lower agreement was seen on date of first presentation to primary care and date of treatment initiation compared to date of diagnosis.

Type: Article
Title: Agreement between questionnaires and registry data on routes to diagnosis and milestone dates of the cancer diagnostic pathway
Location: Netherlands
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/j.canep.2020.101690
Publisher version: https://doi.org/10.1016/j.canep.2020.101690
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Early Detection of Cancer, Data Accuracy, Surveys and Questionnaires, Registries, Breast Neoplasms, Colorectal Neoplasms, Lung Neoplasms, Ovarian Neoplasms
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Inst of Clinical Trials and Methodology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Inst of Clinical Trials and Methodology > MRC Clinical Trials Unit at UCL
URI: https://discovery.ucl.ac.uk/id/eprint/10093566
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