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BMJ Open. 2016 Jul 25;6(7):e009641. doi: 10.1136/bmjopen-2015-009641.

An investigation of routes to cancer diagnosis in 10 international jurisdictions, as part of the International Cancer Benchmarking Partnership: survey development and implementation.

Author information

1
Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK.
2
Department of Public Health, Research Unit for General Practice, Aarhus University, Aarhus, Denmark.
3
Gynaecological Cancer Research Centre, Women's Cancer, Institute for Women's Health, University College London, London, UK.
4
Department of Prevention and Cancer Control, Cancer Care Ontario, Toronto, Ontario, Canada.
5
Centre for Public Health, Queen's University Belfast, Northern Ireland Cancer Registry, Belfast, UK.
6
Department of Family and Community Medicine, Knowledge Translation Research Network Health Services Research Program, Ontario Institute for Cancer Research, University of Toronto, Toronto, Ontario, Canada.
7
Department of Medical Epidemiology and Biostatics, Regional Cancer Center Uppsala and, Karolinska Institutet, Stockholm, Sweden.
8
North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK.
9
Department of Oncology, Lund University Hospital, Lund, Sweden.
10
Population Oncology, CancerCare Manitoba, Winnipeg, Manitoba, Canada.
11
Centre for Behavioral Research in Cancer, Cancer Council Victoria, Melbourne, Victoria, Australia.
12
Department of Policy and Information, Cancer Research UK, London, UK.

Abstract

OBJECTIVES:

This paper describes the methods used in the International Cancer Benchmarking Partnership Module 4 Survey (ICBPM4) which examines time intervals and routes to cancer diagnosis in 10 jurisdictions. We present the study design with defining and measuring time intervals, identifying patients with cancer, questionnaire development, data management and analyses.

DESIGN AND SETTING:

Recruitment of participants to the ICBPM4 survey is based on cancer registries in each jurisdiction. Questionnaires draw on previous instruments and have been through a process of cognitive testing and piloting in three jurisdictions followed by standardised translation and adaptation. Data analysis focuses on comparing differences in time intervals and routes to diagnosis in the jurisdictions.

PARTICIPANTS:

Our target is 200 patients with symptomatic breast, lung, colorectal and ovarian cancer in each jurisdiction. Patients are approached directly or via their primary care physician (PCP). Patients' PCPs and cancer treatment specialists (CTSs) are surveyed, and 'data rules' are applied to combine and reconcile conflicting information. Where CTS information is unavailable, audit information is sought from treatment records and databases.

MAIN OUTCOMES:

Reliability testing of the patient questionnaire showed that agreement was complete (κ=1) in four items and substantial (κ=0.8, 95% CI 0.333 to 1) in one item. The identification of eligible patients is sufficient to meet the targets for breast, lung and colorectal cancer. Initial patient and PCP survey response rates from the UK and Sweden are comparable with similar published surveys. Data collection was completed in early 2016 for all cancer types.

CONCLUSION:

An international questionnaire-based survey of patients with cancer, PCPs and CTSs has been developed and launched in 10 jurisdictions. ICBPM4 will help to further understand international differences in cancer survival by comparing time intervals and routes to cancer diagnosis.

KEYWORDS:

early detection of cancer; general practice; health services research; primary health care; time factors, diagnosis

PMID:
27456325
PMCID:
PMC4964239
DOI:
10.1136/bmjopen-2015-009641
[Indexed for MEDLINE]
Free PMC Article

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