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An investigation of routes to cancer diagnosis in 10 international jurisdictions, as part of the International Cancer Benchmarking Partnership: survey development and implementation
  1. David Weller1,
  2. Peter Vedsted2,
  3. Chantelle Anandan1,
  4. Alina Zalounina2,
  5. Evangelia Ourania Fourkala3,
  6. Rakshit Desai3,
  7. William Liston3,
  8. Henry Jensen2,
  9. Andriana Barisic4,
  10. Anna Gavin5,
  11. Eva Grunfeld6,
  12. Mats Lambe7,
  13. Rebecca-Jane Law8,
  14. Martin Malmberg9,
  15. Richard D Neal8,
  16. Jatinderpal Kalsi3,
  17. Donna Turner10,
  18. Victoria White11,
  19. Martine Bomb12,
  20. Usha Menon3
  21. ICBP Module 4 Working Group*
  1. 1Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK
  2. 2Department of Public Health, Research Unit for General Practice, Aarhus University, Aarhus, Denmark
  3. 3Gynaecological Cancer Research Centre, Women's Cancer, Institute for Women's Health, University College London, London, UK
  4. 4Department of Prevention and Cancer Control, Cancer Care Ontario, Toronto, Ontario, Canada
  5. 5Centre for Public Health, Queen's University Belfast, Northern Ireland Cancer Registry, Belfast, UK
  6. 6Department 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. 7Department of Medical Epidemiology and Biostatics, Regional Cancer Center Uppsala and, Karolinska Institutet, Stockholm, Sweden
  8. 8North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK
  9. 9Department of Oncology, Lund University Hospital, Lund, Sweden
  10. 10Population Oncology, CancerCare Manitoba, Winnipeg, Manitoba, Canada
  11. 11Centre for Behavioral Research in Cancer, Cancer Council Victoria, Melbourne, Victoria, Australia
  12. 12Department of Policy and Information, Cancer Research UK, London, UK
  1. Correspondence to Professor David Weller; david.weller{at}ed.ac.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.

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

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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