title: An investigation of routes to cancer diagnosis in 10 international jurisdictions, as part of the International Cancer Benchmarking Partnership: survey development and implementation.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK.
authors.forename: David
authors.initials: D
authors.lastname: Weller
authors.affiliation: Department of Public Health, Research Unit for General Practice, Aarhus University, Aarhus, Denmark.
authors.forename: Peter
authors.initials: P
authors.lastname: Vedsted
authors.affiliation: Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK.
authors.forename: Chantelle
authors.initials: C
authors.lastname: Anandan
authors.affiliation: Department of Public Health, Research Unit for General Practice, Aarhus University, Aarhus, Denmark.
authors.forename: Alina
authors.initials: A
authors.lastname: Zalounina
authors.affiliation: Gynaecological Cancer Research Centre, Women's Cancer, Institute for Women's Health, University College London, London, UK.
authors.forename: Evangelia Ourania
authors.initials: EO
authors.lastname: Fourkala
authors.affiliation: Gynaecological Cancer Research Centre, Women's Cancer, Institute for Women's Health, University College London, London, UK.
authors.forename: Rakshit
authors.initials: R
authors.lastname: Desai
authors.affiliation: Gynaecological Cancer Research Centre, Women's Cancer, Institute for Women's Health, University College London, London, UK.
authors.forename: William
authors.initials: W
authors.lastname: Liston
authors.affiliation: Department of Public Health, Research Unit for General Practice, Aarhus University, Aarhus, Denmark.
authors.forename: Henry
authors.initials: H
authors.lastname: Jensen
authors.affiliation: Department of Prevention and Cancer Control, Cancer Care Ontario, Toronto, Ontario, Canada.
authors.forename: Andriana
authors.initials: A
authors.lastname: Barisic
authors.affiliation: Centre for Public Health, Queen's University Belfast, Northern Ireland Cancer Registry, Belfast, UK.
authors.forename: Anna
authors.initials: A
authors.lastname: Gavin
authors.affiliation: 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.
authors.forename: Eva
authors.initials: E
authors.lastname: Grunfeld
authors.affiliation: Department of Medical Epidemiology and Biostatics, Regional Cancer Center Uppsala and, Karolinska Institutet, Stockholm, Sweden.
authors.forename: Mats
authors.initials: M
authors.lastname: Lambe
authors.affiliation: North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK.
authors.forename: Rebecca-Jane
authors.initials: RJ
authors.lastname: Law
authors.affiliation: Department of Oncology, Lund University Hospital, Lund, Sweden.
authors.forename: Martin
authors.initials: M
authors.lastname: Malmberg
authors.affiliation: North Wales Centre for Primary Care Research, Bangor University, Wrexham, UK.
authors.forename: Richard D
authors.initials: RD
authors.lastname: Neal
authors.affiliation: Gynaecological Cancer Research Centre, Women's Cancer, Institute for Women's Health, University College London, London, UK.
authors.forename: Jatinderpal
authors.initials: J
authors.lastname: Kalsi
authors.affiliation: Population Oncology, CancerCare Manitoba, Winnipeg, Manitoba, Canada.
authors.forename: Donna
authors.initials: D
authors.lastname: Turner
authors.affiliation: Centre for Behavioral Research in Cancer, Cancer Council Victoria, Melbourne, Victoria, Australia.
authors.forename: Victoria
authors.initials: V
authors.lastname: White
authors.affiliation: Department of Policy and Information, Cancer Research UK, London, UK.
authors.forename: Martine
authors.initials: M
authors.lastname: Bomb
authors.affiliation: Gynaecological Cancer Research Centre, Women's Cancer, Institute for Women's Health, University College London, London, UK.
authors.forename: Usha
authors.identifier: 0000-0003-3708-1732
authors.initials: U
authors.lastname: Menon
mesh_terms: D000704:Analysis of Variance; D000971:Antineoplastic Combined Chemotherapy Protocols; D001315:Australia / Q000453:epidemiology; D019985:Benchmarking; D001943:Breast Neoplasms / Q000175:diagnosis* / Q000453:epidemiology; D002170:Canada / Q000453:epidemiology; D015179:Colorectal Neoplasms / Q000175:diagnosis* / Q000453:epidemiology; D003430:Cross-Sectional Studies; D003718:Denmark / Q000453:epidemiology; D055088:Early Detection of Cancer / Q000592:standards; D005260:Female; D006801:Humans; D008175:Lung Neoplasms / Q000175:diagnosis* / Q000453:epidemiology; D009664:Norway / Q000453:epidemiology; D010051:Ovarian Neoplasms / Q000175:diagnosis* / Q000453:epidemiology; D010865:Pilot Projects; D010818:Practice Patterns, Physicians' / Q000458:organization & administration* / Q000706:statistics & numerical data; D011320:Primary Health Care / Q000592:standards; D012042:Registries; D015203:Reproducibility of Results; D015996:Survival Rate; D013548:Sweden / Q000453:epidemiology; D006113:United Kingdom / Q000453:epidemiology
keywords: early detection of cancer; general practice; health services research; primary health care; time factors, diagnosis