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Impact of variation in cancer registration practice on observed international cancer survival differences between International Cancer Benchmarking Partnership (ICBP) jurisdictions
Institution:1. National Cancer Registry and Analysis Service (NCRAS), England, UK;2. Policy and Information, Cancer Research UK, England, UK;3. National Disease Registration, Public Health England, England, UK;4. Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Sweden;5. National Board of Health and Welfare, Stockholm, Sweden;6. N. Ireland Cancer Registry, Queen’s University Belfast, Northern Ireland, UK;7. Scottish Cancer Registry, NHS National Services Scotland, Scotland, UK;8. European Palliative Care Research Centre (PRC), Department of Clinical and Molecular Medicine, Norwegian University of Science and Technology (NTNU), Norway;9. Cancer Registry of Norway, Oslo, Norway;10. Cancer Epidemiology and Intelligence Division, Cancer Council Victoria, Melbourne, Australia;11. Victorian Cancer Registry, Cancer Council Victoria, Melbourne, Australia;12. Prevention and Cancer Control, Cancer Care Ontario, Ontario, Canada;13. Ontario Cancer Registry, Cancer Care Ontario, Ontario, Canada;14. Welsh Cancer Intelligence and Surveillance Unit, Public Health Wales, Wales, UK;15. Epidemiology and Cancer Registry, CancerCare Manitoba, Manitoba, Canada;p. Institute for Clinical Evaluative Sciences, Ontario Institute for Cancer Research, Ontario, Canada;q. Respiratory Medicine, University of Leicester and National Cancer Registration and Analysis Service (NCRAS), England, UK;1. Group of Evaluation of Health Determinants and Health Policies, Universitat Internacional de Catalunya, Sant Cugat del Vallès, Spain;2. Screening Cancer Unit, Cancer Prevention and Control Program, Institut Català d’Oncologia, L''Hospitalet de Llobregat, Barcelona, Spain;3. Cancer Prevention and Control Group, Institut d''Investigació Biomèdica de Bellvitge - IDIBELL, L''Hospitalet de Llobregat, Barcelona, Spain;1. INSERM, Sorbonne Université, Institut Pierre Louis d’Epidémiologie et de Santé Publique IPLESP, Department of social epidemiology, F75012 Paris, France;2. CESP, INSERM U1018, Univ Paris-Saclay, Univ Paris-Sud, UVSQ, Villejuif, France;3. Inserm, Population-based Epidemiologic Cohorts Unit, UMS 011, Villejuif, France;4. University of Versailles St-Quentin, UMRS 1018, Villejuif, France;1. Department of Environmental Health, School of Public Health, University of São Paulo, Av. Dr. Arnaldo, 715, São Paulo, SP, CEP 01246-904, Brazil;2. Department of Preventive Veterinary Medicine and Animal Health, School of Veterinary Medicine, University of São Paulo, Av. Prof. Dr. Orlando M. de Paiva, 87, São Paulo, SP, CEP 05508-270, Brazil;3. Center for Epidemiological Surveillance, State Department of Health, Av. Dr. Arnaldo, 351, São Paulo, SP, CEP: 01246-000, Brazil;4. Department of Epidemiology, School of Public Health, University of São Paulo, Av. Dr. Arnaldo, 715, São Paulo, SP, CEP 01246-904, Brazil;1. Israel Center for Disease Control, Israel Ministry of Health, Israel;2. Sackler Faculty of Medicine, Tel Aviv University, Israel;3. School of Public Health, University of Haifa, Israel;1. The University of Texas MD Anderson Cancer Center, Houston, TX, USA;2. The University of Texas Health Science Center at Houston, Houston, TX, USA;3. Corrona, LLC, Southborough, MA, USA;4. California Pacific Medical Center Research Institute, San Francisco, CA, USA;1. Immunology and General Pathology Laboratory, Department of Biotechnology and Life Sciences, University of Insubria, Varese, Italy;2. Cancer Biology, Division of Cancer and Stem Cells, School of Medicine, University of Nottingham, Queen''s Medical Centre, Nottingham NG2 7UH, UK;3. Scientific and Technology Pole, IRCCS MultiMedica, Milan, Italy
Abstract:BackgroundInternational cancer survival comparisons use cancer registration data to report cancer survival, which informs the development of cancer policy and practice. Studies like the International Cancer Benchmarking Partnership (ICBP) have a duty to understand how registration differences impact on survival prior to drawing conclusions.MethodsKey informants reported differences in registration practice for capturing incidence date, death certificate case handling and registration of multiple primary tumours. Sensitivity analyses estimated their impact on one-year survival using baseline and supplementary cancer registration data from England and Sweden.ResultsVariations in registration practice accounted for up to a 7.3 percentage point difference between unadjusted (estimates from previous ICBP survival data) and adjusted (estimates recalculated accounting for registration differences) one-year survival, depending on tumour site and jurisdiction.One-year survival estimates for four jurisdictions were affected by adjustment: New South Wales, Norway, Ontario, Sweden. Sweden and Ontario’s survival reduced after adjustment, yet they remained the jurisdictions with the highest survival for breast and ovarian cancer respectively. Sweden had the highest unadjusted lung cancer survival of 43.6% which was adjusted to 39.0% leaving Victoria and Manitoba with the highest estimate at 42.7%. For colorectal cancer, Victoria’s highest survival of 85.1% remained unchanged after adjustment.ConclusionPopulation-based cancer survival comparisons can be subject to registration biases that may impact the reported ‘survival gap’ between populations. Efforts should be made to apply consistent registration practices internationally. In the meantime, survival comparison studies should provide acknowledgement of or adjustment for the registration biases that may affect their conclusions.
Keywords:Cancer survival  Cancer registration  Date of diagnosis  Death certificate  Multiple primaries  International comparisons
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