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NRI - 2014

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.

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NRI - 2014

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  1. Population based relative survivalafter cancer – a comparisonbetween the Nordic countries 1964-2011 An example of a long standingfruitful Nordic collaborationsupported by the Nordic Cancer Union Hans H. Storm, MD Medical Director Danish Cancer Society NRI - 2014

  2. 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

  3. Pre-NORDCANpublications Engeland, T. Haldorsen, S. Tretli, T. Hakulinen, L. G. Hørte, T. Luostarinen, G. Schou, H. Sigvaldason, H. H. Storm, H. Tulinius, and P. Vaittinen. Prediction of cancer mortality in the Nordic countries up to the years 2000 and 2010. APMIS 103:4-163, 1995. Prediction based on relative survival estimates. First publication since 1960’s demonstrating large differences in survival – initiator of cancer control plans Engeland, T. Haldorsen, S. Tretli, T. Hakulinen, L-G. Hörte, T. Luostarinen, K. Magnus, G. Schou, H. Sigvaldason, H. H. Storm, H. Tulinius, and P. Vaittinen. Prediction of cancer incidence in the Nordic countries up to the years 2000 and 2010. APMIS Supplementum No.38 101:5-124, 1993. First joint prediction publication – showing both the impact of population changes and change in “risk”. • H. Tulinius, H. H. Storm, E. Pukkala, A. Andersen, and J. Ericsson. Cancer in the Nordic countries, 1981-86. A joint publication of the five Nordic Cancer Registries. APMIS 100 (Supplementum no. 31):1-194, 1992. • First attempt to produce a joint incidence publication, with similar definitions by cancer sites. NRI - 2014

  4. 5 year relative survival in the Nordic countriesColon and rectum cancer, men. Colon cancer Rectum cancer Engeland et al. APMIS suppl 49, vol 103, 1995

  5. 5 year relative survivalafter cancer in the Nordic countries Denmark vsotherNordic-selected cancers OOPS – Denmark needs to re-consider! Adapted from Engeland et al. APMIS suppl 49, 1995

  6. "Something is rotten in the State of Denmark” – Public debate; oftentargetingtreatmentfailure! – but …. • Life style – tobacco-alcohol etc. • Patient delay - poorknowledgeabout cancer symptoms ? • Doctors delay - ignorance, pooreducation, poordiagnostics – co-morbidity? • Hospital delay - poororganization, pooreducation • Poorequipment - diagnostics, therapymachines • Pooreconomy - lack of resources, no "science" • Poorfollow-up and aftercare • Lack of a comprehensive cancer plan !!!!!!!!!!

  7. 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.

  8. Cancer Plans – 2000, 2005 & 2011

  9. 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

  10. 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 untilyoucan monitor it.

  11. 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?

  12. Measures of cancer patient survival & data material

  13. DATA source www.ancr.nu

  14. NRI 2014

  15. Coding and qualitycontrol 2012 Data Collection and coding process Automated Cancer Logic The National Patient Register The National Register for Cancer The National Register for Pathology The primaryCareSector Manual control and coding The National Register for Cancer

  16. Trends in incidence, mortality & 5 yrrel. survival in the Nordic countries; All cancers except non-melanoma skin 1964-2003, followedthrough 2006

  17. Baggrund: 5-year relative cancer survival in the Nordic countries all sites excl. prostate and breast1964-2003 followedthrough 2006 Men Women Storm et al., Acta Oncol 2010; 49: 713-724

  18. 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

  19. 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, otherleukaemia • Women • DK lowest in 26 of 35 sites • >10 % points • Tongue, kidney, stomach, small intest., colon, thyroid, bone, otherleukaemia,lip, pharynx, rectum, bladder, ovary

  20. 1 year relative survival vs. 5 year LOESS curves 15 frequent sites, excl. prostate and breast

  21. 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

  22. 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

  23. Incidence 1943-2011 Mortality 1952-2011 5 year Relative Survival NRI - 2014

  24. Conclusionssurvival studies • The poorsurvivalexpressed as excessmortality is predominantduring the 1. year. • Changesalso in longer term survival stems from the 1. year of follow-up. • 1 yearsurvivalcanbeused to monitor the effect of changesrelated to a cancer control plan ondiagnosis and treatment. • Proper adjustment for case-mix is necessary • Adjustment for ”new diagnostics” neededwhenstudying ”all cancers combined” • Monitoring of incidence and mortality is needed for comprehensive cancer control. • International benchmarking is needed to fullyassess the effect of cancer control.

  25. Fast track referral for cancer % 60% other routes 11% of referred cancer confirmed

  26. 1 yearsurvival and comorbidity * 16-33% of all patients ** <10% of all patients

  27. All cancer 1 yrrsr (%) for high Social Position (SP) and % point diff. vslow SP, ages 30+ in Denmark 1994-06 Dalton et al – CANULI – EJC 2008

  28. 1 Year stage specifik relative survival, colon cancer 2004-9

  29. 1 year stage specific relative survival ”treatmentrecorded” colon cancer 2004-9

  30. Survival studies was an initiator now outcome measure - Still: Something is rotten in the State of Denmark, but for how long?

  31. Cancer Registry1943- Cause of DeathRegister 1943 - Hospital Patient Register 1978 - Medical Birth Register CongenitalMalformation Register Central Registerof CytogeneticAnomalities CentralPopulationRegister Register for InducedAbortions Natl. PathologyRegister 2000 - tissue+blocs22 – dept. 1977- - - DMCG 20Clinical DB’s Natl. Biobank2012 - StatisticsDenmark Prescription DB

  32. What if we miss a link! Influence of missed link to mortality – by errorproportion (E. Pukkala) Leukaemiarisk in airline pilots – Denmark: 5 cases – significantincreasedrisk 4 cases – nosignifcantrisk – but elevated SIR Germany NRW cancer registrylinkagestudy 150000 records Pseudonyms: 1% linkedwrongly 2% Not linked at all

  33. PrivacyEnhancingTechnologyPET

  34. Doesonesizefit all?

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