Collaborators. ICBP Module 5 Working Group

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What proportion of international cancer survival differences could be attributed to differences in cancer registration protocols between ICBP jurisdictions? Dr. Michael Eden On behalf of Collaborators of the International Cancer Benchmarking Partnership (ICBP) Module 5 Working Group and Jurisdictions of the ICBP

Collaborators ICBP Module 5 Working Group ICBP Module 5 Central Team at Public Health England Mike Eden, Michelle Griffin Jem Rashbass Eva Morris Mick Peake Margreet Luchtenborg Daniela Tataru Victoria Coupland Anna Gavin, Northern Ireland, UK Conan Donnelly, Northern Ireland, UK Dyfed Huws, Wales, UK David H Brewster, Scotland, UK Andrew Deas, Scotland, UK Anne-Kari Knudsen, Norway Yulan Lin, Norway Bjørn Møller, Norway Donna Turner, Manitoba, Canada Craig Earle, Ontario, Canada Mary-Jane King, Ontario, Canada Diane Nishri, Ontario, Canada Roger Milne, Victoria, Australia Deborah Baker, NSW, Australia Richard Walton, NSW, Australia

Collaborators ICBP Module 5 Funders Cancer Control Alberta Cancer Care Ontario Cancer Institute NSW Cancer Council Victoria Department of Health and Human Services, Victoria Norwegian Directorate of Health European Palliative Care Research Centre (PRC), Norwegian University of Science and Technology (NTNU) Scottish Government Public Health Wales & Tenovus Cancer Care NHS England National Cancer Action Team Northern Ireland Cancer Registry, funded by the Public Health Agency Danish Health and Medicines Authority Module 5 Academic Reference Group Hannah Wier, Centre for Disease Control, USA Paul Dickman, Karolinska Institut, Sweden Paul Lambert, University of Liecester, UK Henrik Møller, Kings College London, UK CRUK Programme Management Team Martine Bomb Brad Groves Samantha Harrison Irene Reguilon Debbie Robinson

IntroductionThis image cannot currently be displayed.

International comparisons of awareness & beliefs

Methodology Key informant exercise in ICBP registries Quantification of differences in registration practice Adjustments made for differences in registration practice. Data from English Cancer Registry (East of England) Definition of date of diagnosis pathology/clinical etc. Registration of multiple primary tumours Data from the National Board of Health and Welfare, Stockholm, Sweden Death certification handling including DCOs (Death Certificate Only)

Definition of date of diagnosis

Definition of date of diagnosis Typical patient pathway Prioritised Definition Date Pathology (Baseline) Imaging Secondary Care Seen in Primary Care (All cases) Breast 93.7% [1336] Colorectal 73.2% [1216] Lung 29.3% [157] 93.7% (+0.0) [1336] 73.3% (+0.1) [1216] 29.6% (+0.3) [160] 93.9% (+0.2) [1351] 74.0% (+0.8) [1231] 30.7% (+1.4) [175] 94.5% (+0.8) [1434] 76.0% (+2.8) [1260] 36.6% (+7.3) [212] Greatest difference in 1- year survival seen in lung followed by colorectal and ovary Ovary 67.3% [833] 67.4% (+0.1) [833] 68.1% (+0.8) [833] 69.9% (+2.6) [975] 1-year overall survival with prioritisation of different incidence date definitions for the four tumour sites studied. Percentage point differences in ( ). Median days survived in [ ]. NCRAS, Eastern Office 2010 data

DCO Handling Tumour Site Registered cases in Cancer Register (Group A) Death certificates with correct tumour registerable from Patient Register (Group B) Combined Total of Group A and B 1 year survival (Group A) 1 year survival (Group B) 1 year survival (Group A and B combined) Colorectal 35,542 1,562 37,104 82.96% 19.08% 80.27% (-2.69) Lung 18,636 2,893 21,529 43.87% 18.29% 40.43% (-3.44) Ovary 5,294 698 5,992 86.02% 40.83% 80.76% (-5.26) 1-year overall survival for Swedish 2008-2012 cases comparing cases only registered in cancer register and combined registered and unregistered cases. Percentage point difference in brackets. (National Board of Health and Welfare, Stockholm, Sweden) Adjusting for the exclusion of DCO cases in Sweden leads to a significant drop in 1-year survival for colorectal, lung and ovarian tumours

Multiple primary tumours % of adults (15-99 years) diagnosed during 1995-2007 whose cancer was a 2 nd or higher-order primary Colorectal Breast Lung Ovary Alberta 13.0 8.7 14.5 12.0 British Columbia 14.6 9.9 14.7 10.4 Manitoba 14.8 11.0 17.9 13.5 Ontario 8.1 4.9 8.7 8.5 Proportion recorded in Ontario compared to highest (54.7%) (44.5%) (48.6%) (62.9%) Percentage of adults diagnosed during 1995-2007 whose cancer was a second or higher-order primary by cancer and jurisdiction

Multiple primary tumours % 1 year overall survival 1 st order tumours only 1 st or higher order tumours Percentage point difference Breast 92.1 89.5 2.6 1.2 Colorecta 3.4 1.9 86.8 83.4 l Lung 68.7 55.9 12.8 6.2 Ovary 85.8 83.0 2.8 1.8 Percentage point difference multiplied by average proportion recorded in Table 5 Adjusting for inclusion of all 2 nd or higher order primaries shows the largest differences in 1-year survival for lung followed by colorectal and ovary NCRAS East of England region 1996-2012 data - Comparison of 1-year overall survival between 1st order only and 1st or higher order tumours

Estimated impact of differences in cancer registration on 1-year survival

Estimated impact of differences in cancer registration on 1-year survival

Conclusions and Recommendations Adjustments show some changes in the 1 year survival with some narrowing of the survival gap between the UK and other countries However the ranking remains the same for breast, colorectal and lung with the UK survival still lowest Cancer registries should be encouraged to: use the same definitions for date of diagnosis use the same routines for identification of multiple primaries investigate thoroughly death initiate notifications