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Population based relative survival after cancer – a comparison between the Nordic countries 1964-2011 An example of a long standing fruitful Nordic collaboration supported by the Nordic Cancer Union Hans H. Storm, MD Medical Director Danish Cancer Society NRI - 2014 Is cancer control programmes relevant for the Nordic countries? • Opinion in 1980’s-1990’s: • We are among the richest societies in the world. • We can afford even the most costly treatments. • We have free access and free treatment for all. • We have superb social security systems. • We have excellent science on cancer treatment. • We are (were) among countries with the longest life expectancy. • We have demonstrated steady improvement in cancer survival over decades! NRI - 2014 Pre-NORDCAN publications Engeland, G. Engeland, T. T. Haldorsen, Haldorsen, S. S. Tretli, Tretli, T. T. Hakulinen, Hakulinen, L. L-G. Hørte, Hörte, T. T. Luostarinen, Luostarinen, G. K. Schou, Magnus,H.G.Sigvaldason, Schou, H. H. H. andE.P. Vaittinen. Prediction Sigvaldason, H.H.H.Storm, Storm, H. Tulinius,A.and P. H. Storm, Tulinius,H.H.Tulinius, Pukkala, Andersen, of cancer mortality in Nordic countries up Vaittinen. Prediction ofthe cancer incidence in the and J. Ericsson. Cancer in the Nordic countries, to the years 2000publication and APMIS 103:4-163, Nordic countries up to 2010. the years 2000 1981-86. A joint of the fiveand Nordic 1995. 2010. Supplementum No.38 101:5-124, CancerAPMIS Registries. APMIS 100 (Supplementum 1993. no. 31):1-194, 1992. Prediction based on relative survival estimates. First sincepublication 1960’s demonstrating large First publication joint prediction –incidence showing both the attempt to produce a joint differences inwith survival – initiator ofchange cancer control impact of population changes and in “risk”. publication, similar definitions by cancer sites. plans NRI - 2014 5 year relative survival in the Nordic countries Colon and rectum cancer, men. 50 Colon cancer Relative survival % 45 40 35 Denmark Finland Iceland Norway Sweden 30 25 20 15 10 5 0 1958-1962 1963-1967 1968-1972 1973-1977 1978-1982 1983-1987 50 Rectum cancer Relative survival % 45 40 35 Denmark Finland Iceland Norway Sweden 30 25 20 15 10 5 0 1958-1962 1963-1967 1968-1972 1973-1977 1978-1982 1983-1987 Engeland et al. APMIS suppl 49, vol 103, 1995 5 year relative survival after cancer in the Nordic countries Denmark vs other Nordic- selected cancers Cancer Last period where Denmark ~ ”Nordic” Danish ”gap” (% point) to best survival 1983-87 Oesophagus 1978-82 9 Stomach 1968-82 9-13 Colon 1963-67 12 Lung 1963-67 5-6 Breast 1963-67 9 Ovary < 1958 13 Kidney 1958-62 12-13 Adapted from Engeland et al. APMIS suppl 49, 1995 "Something is rotten in the State of Denmark” – Public debate; often targeting treatment failure! – but …. • Life style – tobacco-alcohol etc. • Patient delay - poor knowledge about cancer symptoms ? • Doctors delay - ignorance, poor education, poor diagnostics – co-morbidity? • Hospital delay - poor organization, poor education • Poor equipment - diagnostics, therapy machines • Poor economy - lack of resources, no "science" • Poor follow-up and after care • Lack of a comprehensive cancer plan !!!!!!!!!! The realities in 1995!! • Cancer survival improves in Denmark • No geographical differences in survival obvious • Assumption – no social differences – free medicare • No International benchmarking since 1960’s! • Organisation – at least 5 different professional oncological societies ! (Radiation, medical oncology (DMO), young oncologist, DSO, DSHHO, hematology….DSKO..) • Surgery – 60% of cancer treatment, organ based societies. Cancer Plans – 2000, 2005 & 2011 Cancer Plan III, 2011 – addition to I and II • Fast track diagnosis if cancer suspected and strengthening of early diagnosis/screening • Better aftercare and improved rehabilitation and Palliation • Increased survival for cancer patients with better quality of life before, during and after treatment. • Service check of cancer packages • Screening for CRC in 2014 • Strengthening of tobacco control • Education of GP’s Florence Nightingale 1875 The ultimate goal is to manage quality. But you cannot manage it until you have a way to measure it, and you cannot measure it until you can monitor it. Monitoring of the Cancer Plan • Cancer Registry – at the time severely delayed! • Cancer Mortality – at the time severely delayed! • Clinical databases – not complete, biased?, quality? • Hospital Discharge Registry – administrative registry, only patients admitted to hospitals, quality? • What happens from suspicion to diagnosis and referral? Time, bottlenecks etc. • What happens “within” the system? Internal waiting times? Measures of cancer patient survival & data material Measure Advantage Issues Observed Total mortality – ok for patient/clinician Comparisons -Time trends confounded Cause specific Mortality due to cancer Death classification accuracy Relative Mortality due to cancer – direct/indirectly Need expected surv. In comparable population RCT Best possible surv., stage Comparisonselection Hospital data (LPR) Timely Quality – selection bias – FU Cancer Registry Incidence,Population, ”no selection”, Complete FU, Quality, FU, Linkages, Data material DATA source www.ancr.nu NRI 2014 Coding and quality control 2012 Data Collection and coding process The National Patient Register Automated Cancer Logic The National Register for Cancer The National Register for Pathology The primary Care Sector Manual control and coding The National Register for Cancer Danish National Board of Health Trends in incidence, mortality & 5 yr rel. survival in the Nordic countries; All cancers except non-melanoma skin 1964-2003, followed through 2006 Baggrund: 5-year relative cancer survival in the Nordic countries all sites excl. prostate and breast 1964-2003 followed through 2006 Men Storm et al., Acta Oncol 2010; 49: 713-724 Women Case-mix adjusted excess mortality of cancer patients in the Nordic countries 1964-2003 followed through 2006. Storm et al., Acta Oncol 2010; 49: 713-724 Benchmarking 5 yr RSR Nordic study 2010. • Men • DK lowest in 23 of 33 sites • > 10 % points • Small intestine, penis, other genital, kidney, tongue, eye, thyroid, stomach, bone, colon, other leukaemia • Women • DK lowest in 26 of 35 sites • >10 % points – Tongue, kidney, stomach, small intest., colon, thyroid, bone, other leukaemia,lip, pharynx, rectum, bladder, ovary 1 year relative survival vs. 5 year LOESS curves 15 frequent sites, excl. prostate and breast In search of perfect data ... “The scientific purist who waits for medical statistics until they are nosologically exact is no more than Horace’s purist, waiting for the river to flow away.” Major Greenwood, Biometrika 1942 Improved survival of Danish cancer patients 2007-9 compared to patients from earlier periods Hans Henrik Storm, Anne Mette Tranberg Kejs & Gerda Engholm Danish Cancer Society Prevention and Documentation Dan Med Bul 2011;58(12):A4346 Ugeskr Læger 2012;174(8):479 Incidence 1943-2011 Mortality 1952-2011 NRI - 2014 5 year Relative Survival Conclusions survival studies • The poor survival expressed as excess mortality is predominant during the 1. year. • Changes also in longer term survival stems from the 1. year of follow-up. • 1 year survival can be used to monitor the effect of changes related to a cancer control plan on diagnosis and treatment. • Proper adjustment for case-mix is necessary • Adjustment for ”new diagnostics” needed when studying ”all cancers combined” • Monitoring of incidence and mortality is needed for comprehensive cancer control. • International benchmarking is needed to fully assess the effect of cancer control. Fast track referral for cancer % 60% other routes 11% of referred cancer confirmed 1 year survival and comorbidity Cancer Charlson score Reference 0 1-2* 3** Breast (2001-04) 95% 87% 71% Cronin-Fenton et al. 2007 Prostate (2004-06) 94% 83% 69% Lund et al. 2008 Ovary (1995-03) 73% 58% 44% Tetsche et al. 2008 Bladder (2005-07) 73% 59% 44% Lund et al. 2010 Rectum (2004-06) 83% 71% 50% Iversen et al. 2009 Colon (2004-06) 75% 69% 58% * 16-33% of all patients ** <10% of all patients All cancer 1 yr rsr (%) for high Social Position (SP) and % point diff. vs low SP, ages 30+ in Denmark 1994-06 Men Women High SP 1 yr RSR Low SP % diff. High SP 1 yr RSR Low SP % diff. Education (high/basic) 73 11 82 10 Income (high/low) 73 13 82 10 Working (vs early retired) 74 21 87 17 House owner (vs rental) 68 9 77 5 House size (>150/ 0-49) 61 9 80 15 Married (vs divorsed) 68 12 77 6 City inhab. (vs rural) 65 1 76 1 Dalton et al – CANULI – EJC 2008 1 Year stage specifik relative survival, colon cancer 2004-9 1 year stage specific relative survival ”treatment recorded” colon cancer 2004-9 Survival studies was an initiator now outcome measure Still: Something is rotten in the State of Denmark, but for how long? Cancer Registry 1943- Cause of Death Register 1943 - Natl. Pathology Register 2000 - Congenital Malformation Register Central Register of Cytogenetic Anomalities Hospital Patient Register 1978 - tissue+blocs 22 – dept. Central Population Register 1977- - DMCG 20 Clinical DB’s Medical Birth Register Register for Induced Abortions Natl. Biobank 2012 Statistics Denmark Prescription DB What if we miss a link! 1000 (E. Pukkala) Error 0% 100 Error 2% SIR Influence of missed link to mortality – by error proportion Error 5% Error 10% 10 Error 20% 1 40-49 50-59 60-69 70-79 80+ Age Leukaemia risk in airline pilots – Denmark: 5 cases – significant increased risk 4 cases – no signifcant risk – but elevated SIR Germany NRW cancer registry linkage study 150000 records Pseudonyms: 1% linked wrongly 2% Not linked at all Privacy Enhancing Technology PET Does one size fit all?