1. EUROCHIP Health Indicators for Monitoring Cancer in Europe Health Monitoring Program (HMP) Www.istitutotumori.mi.it/project/eurochip/homepage.htm A Micheli a, P Baili a, A Quaglia b, E Paci c, A Ponti d, C Marinacci e, E Mugno a, C Amati a, E Massimiliani a, N Bianchi a, A Cifalà a, H Lenz f, B Terracini g (a) Unità di Epidemiologia, Istituto Nazionale per lo Studio e la Cura dei Tumori, Milano; (b) Struttura Epidemiologia Descrittiva, Istituto Nazionale Ricerca sul Cancro, Genova; (c) CSPO Istituto Scientifico della Regione Toscana, Firenze (d) Centro di Riferimento per l'Epidemiologia e la Prevenzione Oncologica in Piemonte (CPO-Piemonte), Torino (e) Servizio di Epidemiologia, ASL 5 Piemonte (f) Istituto Superiore di Sanità, Roma; (g) Università di Torino, Torino

2. World-age-stand. Incidence $ PPP rate per 100,000 I) GDP < 15611216.4 II) 15611<GDP<17538243.7 III) GDP > 17538255.0 GDP and cancer incidence I, Estonia, Poland, Slovenia, Slovakia, and Spain; II, UK, Finland, Holland, Sweden, Italy, and Austria; III, Iceland, Denmark, France, Germany, and Switzerland GDP, from OECD.Incidence, from “Cancer incidence in 5 continents”, EUROPREVAL

3. World-age-stand. mortality $ PPP rate per 100,000 I) GDP < 15611140.5 II) 15611<GDP<17538128.3 III) GDP > 17538133.6 GDP and cancer mortality I, Estonia, Poland, Slovenia, Slovakia, and Spain; II, UK, Finland, Holland, Sweden, Italy, and Austria; III, Iceland, Denmark, France, Germany, and Switzerland GDP, from OECD.Mortality, from EUROCIM

4. 5-year cancer relative survival $ PPP % I) GDP < 1561133.4 II) 15611<GDP<1753844.1 III) GDP > 1753845.2 GDP and cancer survival I, Estonia, Poland, Slovenia, Slovakia, and Spain; II, UK, Finland, Holland, Sweden, Italy, and Austria; III, Iceland, Denmark, France, Germany, and Switzerland GDP, from OECD.Survival, from EUROCARE-2

5. Cancer prevalence $ PPP proportion per 100,000 I) GDP < 156111030.3 II) 15611<GDP<175381405.5 III) GDP > 175381524.5 GDP and cancer prevalence I, Estonia, Poland, Slovenia, Slovakia, and Spain; II, UK, Finland, Holland, Sweden, Italy, and Austria; III, Iceland, Denmark, France, Germany, and Switzerland GDP, from OECD.Prevalence, from EUROPREVAL

6. EUROCHIP AIMS AN INTECTUAL WORK INVOLVING CANCER EXPERTS OF EU MEMBERS, CANCER NETWORKS, INSTITUTES AND ORGANISATIONS To produce a list of health indicators which describe cancer in Europe finalized: a) to help the development of the European Health Information System Information System b) to reduce inequalities and c) to promote action in the fight against cancer

7. 130 130 CANCER SPECIALISTS WERE INVOLVED IN EUROCHIP 23 23 INTERNATIONAL MEETINGS WERE HELD ALL ALL COUNTRIES OF THE EUROPEAN UNION PARTICIPATED IN THE PROJECT RESULTS

8. A FORM TO DESCRIBE THE INDICATORS For each indicator we compile a FORM DESIRED INDICATOR all indicator characteristics we wish to have  DESIRED INDICATOR: all indicator characteristics we wish to have METHODOLOGY operational definition, possible sources and methodological issues  METHODOLOGY: operational definition, possible sources and methodological issues AVAILABILITY different countries  AVAILABILITY in different countries

10. 1.The natural history of cancer PreventionPrevention ScreeningScreening DiagnosisDiagnosis TreatmentTreatment End resultsEnd results 2.ECHI classification Demographic and social-economic factorsDemographic and social-economic factors Health statusHealth status Determinants of healthDeterminants of health Health systemHealth system 3.Tumour sites AXES OF CLASSIFICATION

11. 1.All cancers combined without non melanoma skin cancers for cancer burden and cancer trends. For total cost of cancer care. For Incidence and mortality 2.Major cancers (in terms of incidence or prevalence) -Lung for prevention, tobacco smoking (very limited for asbestos). For mortality (in countries without data). For preventable estimation of deaths -Breast for monitoring screening programmes (mortality and incidence) and to evaluate the care (tamoxifen) -Colorectal to evaluate the care, evaluation of early diagnosis (and screening programmes ). For delay of diagnosis -Prostate for future trends and future resources CANCER SITES (1)

12. Major cancersMajor cancers -Stomach -Head and neck-larynx, oropharynx (specifying ICD-9 code) -Melanoma -Bladder Other cancersOther cancers -Kaposi -Mesothelioma -Testis -Lymphomas -Leukaemia -All childhood (0-14) cancers -Cervix CANCER SITES (2)

13. PRIORITIESHIGHMEDIUM Prevention 2 7 (2) 2 4 (2) Epidem. & CR 2 6 (2)- Screening 4 4 (4) 7 7 (7) Treatment 5 5 (5) 3 3 (3) Social-economic variables 2 4 (2) 4 12 (4) TOTAL 15 26 (15) LIST OF THE INDICATORS

14. Population covered by Cancer Registry Organized screening coverage Anti-tobacco regulations Prevalence of occupational exposure to carcinogens Exposure to sun radiation Percentage of women that have undergone a mammography Percentage of women that have undergone a cervical citology exam. Percentage of persons that have undergone a colo-rectal screening test Percentage of radiation systems on population Percentage of diagnostic CT (Computed Axial Tomography) on pop. Proportion of patients treated with palliative radiotherapy Estimated cost for a cancer patient Stage at diagnosis: % of cases with early diagnosis and with a metastatic test Delay of cancer treatment: pilot studies Compliance with best oncology practice

15. Population covered by cancer registries Cancer incidence rates, trends and projections Cancer survival rates, trends and projections Cancer prevalence prop., trends and project. Cancer mortality rates, trends, projections and person-years life lost due to cancer Stage at diagnosis: percentage of cases with early diagnosis and with a metastatic test Delay of cancer treatment: pilot studies Compliance with best oncology practice SOURCES: CANCER REGISTRIES

16. POPULATION COVERED BY CANCER REGISTRIES DEFINITION Proportion of the national population that is covered by general population- based Cancer Registries present in the “Cancer Incidence in 5 Continents” CLASSIFICATION By registration span. For a given calendar year, the indicator shows the percentage of cancer registration coverage of 5, 10 and 20 years at least

17. 1. STAGE AT DIAGNOSIS: PERCENTAGE OF CASES WITH EARLY DIAGNOSIS DEFINITION Proportion of cases classified as "localised" with the condensed-TNM SOURCE The sources are the Cancer Registries routine registration statistics CONTEXT The expected value of this percentage is site dependent. For some sites (like lung) the expected value of the indicator is lower than 100%, but comparisons among countries are still informative.

18. 2. STAGE AT DIAGNOSIS: PERCENTAGE OF CASES WITH A METASTATIC TEST DEFINITION The indicator is the percentage of cancer cases with presence or absence of a detection test for metastasis SOURCE The sources are the Cancer Registries. Specific studies on major cancer sites are to be promoted DETECTION TESTS - Cervix: chest x-ray and pelvic imagine - Colon and rectum: liver ultrasound or CT and chest x-ray - Prostate: bone-scan - Lung: CT thorax

19. DELAY OF CANCER TREATMENT Phases of the disease history:  Symptoms: there is not an event and for this it is not strictly defined on time  First medical attendance: date on which patient reports his/her symptoms to the Health System (general practitioner, hospital...)  Diagnosis: date defined by CR rules  First treatment: date of the beginning of primary treatment. The date of first symptoms is not intrinsically defined as an event and for this reason it will be used the date of the first diagnosis (or first medical attendance for some sites) as the first date reference. pilot studies EUROCHIP suggests to organise pilot studies in order to study the meaning of first diagnosis-first treatment interval for breast, colon, rectum, lung and prostate cancers. To define this indicator, Cancer Registries have to collect the dates of first treatment (all treatments are to be considered: surgery, chemotherapy, radiotherapy or endocrine therapies)

20. As an example, Sant (2001) showed that in Southern Italy a very low proportion of breast cancer patients T1N0M0 were treated with conservative surgery while many received Hastled mastectomy. This a clear deviation to guidelines, although motivated by lack of radiotherapy centres in the area. Source: Sant M, and the EUROCARE Working Group: Differences in stage and therapy for breast cancer across Europe. International Journal of Cancer 93: 894-901 (2001) COMPLIANCE WITH BEST ONCOLOGY PRACTICE Example EUROCHIP group defined specific items for breast, colon, rectum, cervical and lung cancers. The sources should be the Cancer Registries.

21. PERSON-YEARS OF LIFE LOST DUE TO CANCER Years lost due to cancer using general life expectancy as reference FORMULA where a=age, l=age limit, d at =number of deaths at age a, p at =number of persons aged a in country i at time t, P a =number of persons aged a in the reference population, P n =total number of persons aged 0 to l-1 in the reference population DEFINITION

22. Potential years of life lost standardized rate due to cancer (Age<75) (per 100,000 standard population). 1997

23. EUROCHIP RESULTS AN EUROPEAN COHOMPRENSIVE LIST OF INDICATORS FOR CANCERAN EUROPEAN COHOMPRENSIVE LIST OF INDICATORS FOR CANCER FUTURE:FUTURE: 1. TO STUDY CANCER IN EUROPE WITH THE AIM TO DESCRIBE DIFFERENCES 2. TO ESTABLISH GROUPS AT NATIONAL LEVEL (NETWORK & INSTITUTIONS & PERSONS) TO PROMOTE HEALTH AND ACTIONS Www.istitutotumori.mi.it/project/eurochip/homepage.htm

24. INDICATORS “AVAILABLE” LOW COSTS Population covered by cancer registry Cancer incidence rates, trends and projections Cancer survival rates, trends and projections Cancer prevalence prop., trends and project. Cancer mortality rates, trends, projections and person-years life lost due to cancer Gross Domestic Product (OECD) Total Public Expenditure on Health (OECD)

25. SOURCES “AVAILABLE” LOW COSTS Anti-tobacco regulations Organized screening coverage SOURCE: UPDATE OF DATABASES MEDIUM COSTS Prevalence of occupational exposure to carcinogens (CAREX)

26. SOURCE: SURVEYS MEDIUM COSTS % of radiation equipments on population % of diagnostic CT (Computed Axial Tomography) on population % of patients treated with palliative radiotherapy Estimated cost for a cancer patient

27. SOURCE: HEALTH SURVEYS MEDIUM COSTS Consumption of fruit and vegetables (EFCOSUM) Consumption of alcohol (ECAS) Body Mass Index distribution (EHRM) Physical activity (EUPASS) Tobacco survey (EHRM) Exposure to sun radiation % of women that have undergone a mammography % of women that have undergone a cervical citology examination % of persons that have undergone a colo-rectal cancer screening test

28. SOURCE: CANCER REGISTRIES HIGH COSTS Stage at diagnosis: percentage of early diagnosis and of cases with a metastatic test Delay of cancer treatment: pilot studies Compliance with best oncology practice

29. Steering Committee Working Team Operational work Panel of Experts Discussion & organization at national level Methodological Group Methodological aspects of the indicators GS: Groups of specialists Discussion of indicators at national and domain level GS GS GS GSGS GS GS THE ORGANISATION Standardised methods for collecting, checking and validating the data proposed for each indicator

30. Www.istitutotumori.mi.it/project/eurochip/homepage.htm 158 PRELIMINARY LIST OF 158 INDICATORS 52 52 INDICATORS 26 AT HIGH PRIORITY: 15 PROPOSED BY EUROCHIP EUROCHIP MEETINGS LIST OF INDICATORS