1. EUROCHIP Health Indicators for Monitoring Cancer in Europe Health Monitoring Program (HMP) EUROPEAN COMMISSION HEALTH & CONSUMER PROTECTION DIRECTORATE-GENERAL Www.istitutotumori.mi.it/project/eurochip/homepage.htm

2. EUROCHIP INTRODUCTION AIM: To produce a list of health indicators which describe cancer in Europe, to help the development of the future European Health Information System STEP 1 (Jan 2002 – Jul 2002) : To discuss a preliminary list at national level, in all members of the European Union. The result was a list of more than 100 indicators subdivided by priority level STEP 2 (Sep 2002 – Dec 2002) : To discuss the indicators (of the list produced at STEP 1) by different domain (prevention, epidemiology and cancer registration, screening, treatment and clinical aspects, and macro social-economic variables). To discuss methodological problems for the indicators at high priority. STEP 3 (Jan 2003 – May 2003) : Definition of the final list of indicators subdivided by domain and by priority level. Www.istitutotumori.mi.it/project/eurochip/homepage.htm

3. Comprehensive range of health indicators for cancer: LISTOFCANCER INDICATORS INDICATORS RISK FACTORS PRE-CLINICAL ACTIVITY/ SCREENING CLINICAL FOLLOW-UP DIAGNOSTIC AND THERAPEUTIC PROCEDURES CANCER RECURRENCE AND MORTALITY CANCER CARE/ PREVALENCE SURVIVAL OCCURENCE Standardised methods for collecting, checking and validating the data will be proposed for each indicator EUROCHIP CAMON EUROCARE/EUROPREVAL Www.istitutotumori.mi.it/project/eurochip/homepage.htm

4. Www.istitutotumori.mi.it/project/eurochip/homepage.htm 130 130 CANCER SPECIALISTS ARE INVOLVED IN EUROCHIP 23 23 INTERNATIONAL MEETINGS HELD ALL ALL COUNTRIES OF THE EUROPEAN UNION ARE PARTICIPATING IN THE PROJECT STEPS This step:  Final meeting at which the final selection of indicators will be drawn up

5. Www.istitutotumori.mi.it/project/eurochip/homepage.htm RESULTS 158 PRELIMINARY LIST OF 158 INDICATORS 60 60 INDICATORS SUBDIVIDED BY DOMAIN FORM For each indicator we compile a FORM subdivided in three sections: DESIRED INDICATOR  DESIRED INDICATOR: all indicator characteristics we wish to have METHODOLOGY  METHODOLOGY: operational definition, possible sources and methodological issues AVAILABILITY  AVAILABILITY in different countries EUROCHIP MEETINGS LIST OF INDICATORS

6. EUROCHIP FINAL RESULTS (AT THE END OF STEP 3) For each indicator EUROCHIP will produce: DESCRIPTIVE FORM 1.A DESCRIPTIVE FORM including: Desired indicators characteristics (definition, use, caveat …) Operational definition and indications on sources Indications on availability in all EU member countries METHODOLOGICAL FORM 2.A METHODOLOGICAL FORM including: Methodological aspects (standardisation, validity, variability) Bibliography on the indicator Suggestions to the European Commission Www.istitutotumori.mi.it/project/eurochip/homepage.htm

9.  EUROCHIP 2  National EUROCHIP groups  Publications FUTURE

10. PUBLICATIONS European Journal of Public Health: special number with the abstracts of the EUPHA meeting (Dresden, Nov 2002) Cultural spanish review “Las Claras” : an article on the EUROCHIP Murcia meeting will be published European Journal of Public Health: an article on EUROCHIP is under review NATIONAL OR INTERNATIONAL MEETINGS Abstracts of various presentations or posters are under review for: NAACCR annual meeting: Honolulu (Jun 03) AIRT (Italian association CR) meeting: Biella (Apr 03) Reunion du groupe pour l'epidemiologie et l'enregistrement du cancer dans le pays de langue latine: Cuba (May 03) “Sociedad Española de Epidemiología” meeting: Toledo (Oct 03)

11. PLAN OF THE PUBLICATIONS The Steering Committee decided this plan of publications: 1 article with EUROCHIP introduction: EUROPEAN JOURNAL OF CANCER or EUROPEAN JOURNAL OF PUBLIC HEALTH 1 article on methodological aspects: ? 1 article on treatment aspects: EUROPEAN JOURNAL OF CANCER 1 article on prevention: EUROPEAN JOURNAL OF CANCER ON PREVENTION 1 article on screening: EUROPEAN JOURNAL OF CANCER ON PREVENTION 1 article on cancer registration and epidemiology: EUROPEAN JOURNAL OF CANCER Preparation: before summerIn press: October-November

12.  Approval of the entire list with relevant material  Give a priority to the indicators: to find 15-20 most important indicators  A look of the future AIMS OF THE MEETING

13. EUROCHIP PROJECT: LIST OF INDICATORS GOAL: PRIORITIES

14. 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

15. 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)

16. Other major cancers -Stomach for monitoring the decreasing trends (ethnic differences) -Head and neck-larynx, oropharynx (specifying ICD-9 code) for prevention and care. Treatment for organ preservation. Melanoma for prevention (early diagnosis-stage migration) -Bladder: for mortality Other cancers -Kaposi -Kaposi for sentinel -Mesothelioma -Mesothelioma for sentinel -Testis -Testis for rare cancer -Lymphomas and Leukaemia -Lymphomas (H for health services and NH for trends) and Leukaemia (for treatment) -All (or just Leukaemia?) childhood (0-14) cancers -All (or just Leukaemia?) childhood (0-14) cancers (for survival) rare cancer -Cervix -Cervix (for screening) We need information on incidence and mortality (note: corpus uteri vs cervix misclassification) CANCER SITES (2)

17. The final list is the result of various discussions on the priorities of each indicator. These priorities considered together: 1.added value of the indicator, 2.problems on the collection of the data, 3.problems on the comparability among European countries, and 4.costs of the collection BACKGROUND OF THE LIST

18. 1.Awareness of risk associated to exposure to UV radiations: which question for the survey? 2.PM10 emissions: cut-off 3.Screening coverage indicators: only on organized screening or also on opportunistic screening? Which source? INDICATORS: UNRESOLVED PROBLEMS (1)

19. 3.Number of units with at least 2 Linear Accelerators or with a single Lin Acc. 4.Patients treated by surgery, chemotherapy…: which is the utility of this indicator after the collection of the indicator “deviance from best oncology practice”? 5.Palliative care: which indicator? INDICATORS: UNRESOLVED PROBLEMS (2)

20. PREVENTION4 PREVENTION: 14 (4) 0 Lifestyle: 7 (0) 4 Environment & Occupational risk: 6 (4) 0 Medicaments: 1 (0) EPIDEMIOLOGY AND CANCER REGISTRATION5 EPIDEMIOLOGY AND CANCER REGISTRATION: 10 (5) 1 Cancer registration coverage: 1 (1) 3 Epidemiological measure: 7 (3) 1 Cancer registration quality: 2 (1) SCREENING13 SCREENING: 13 (13) 3 Screening coverage: 3 (3) 10 National evaluation of org. scr. process indicators: 10 (10) TREATMENT AND CLINICAL ASPECTS10 TREATMENT AND CLINICAL ASPECTS: 10 (10) 1 Health system delay: 1 (1) 3 Resources: 3 (3) 5 Treatment: 5 (5) 1 Palliative care: 1 (1) SOCIAL AND MACRO-ECONOMIC VARIABLES8 SOCIAL AND MACRO-ECONOMIC VARIABLES: 18 (8) 0 Social indicators: 3 (0) 8 Macro economic indicators: 13 (8) 0 Demographic indicators: 2 (0) LISTLIST

21. 22 PR7 hp (2)4 mp (2) 2 EP6 hp (2) 47 SC4 hp (4)7 mp (7) 53 TR5 hp (5)3 mp (3) 22 MV5 hp (2)11 mp (2) 1514 27 hp (15)25 mp (14)

22. -In “red”: indicators proposed by EUROCHIP -In “black”: indicators proposed by other projects or networks CAPITAL -In “CAPITAL”: indicators at high priority -In “small”: indicators at medium priority LEGENDA OF NEXT SLIDES

23. INDICATORS ALREADY AVAILABLE - LOW COSTS or NO NEW COSTS EXPOSURE TO ASBESTOS: MESOTHELIOMA INCIDENCE AND MORTALITY TRENDS AND MORTALITY TRENDS CANCER INCIDENCE RATE AND TREND CANCER INCIDENCE RATE AND TREND CANCER SURVIVAL RATE AND TREND CANCER SURVIVAL RATE AND TREND CANCER PREVALENCE PROPORTION AND TREND CANCER PREVALENCE PROPORTION AND TREND CANCER MORTALITY RATE AND TREND CANCER MORTALITY RATE AND TREND PERSON-YEARS LIFE LOST DUE TO CANCER PERSON-YEARS LIFE LOST DUE TO CANCER POPULATION COVERED BY CRs IN EUROCIM DATABASE POPULATION COVERED BY CRs IN EUROCIM DATABASE Percentage of cases confirmed microscopically Education level attained Average income and Gini’s index GROSS DOMESTIC PRODUCT GROSS DOMESTIC PRODUCT TOTAL SOCIAL EXPENDITURE TOTAL SOCIAL EXPENDITURE TOTAL NATIONAL EXPENDITURE ON HEALTH TOTAL NATIONAL EXPENDITURE ON HEALTH TOTAL PUBLIC EXPENDITURE ON HEALTH TOTAL PUBLIC EXPENDITURE ON HEALTH Age distribution in 2010-20-30 Life table quantities

24. SOURCES ALREADY AVAILABLE - LOW COSTS or NO NEW COSTS ANTI-TOBACCO REGULATIONS NATIONAL EVALUATION IN HMP OF THE ORGANIZED SCREENING PROCESS INDICATORS SCREENING VOLUME SCREENING VOLUME SCREENING RECALL RATE SCREENING RECALL RATE SCREENING DETECTION RATE SCREENING DETECTION RATE SCREENING LOCALIZED CANCERS SCREENING LOCALIZED CANCERS SCREENING BENIGN/MALIGNANT BIOPSY RATIO SCREENING BENIGN/MALIGNANT BIOPSY RATIO SCREENING INTERVAL CANCERS SCREENING INTERVAL CANCERS SCREENING SENSITIVITY SCREENING SENSITIVITY SCREENING SPECIFICITY SCREENING SPECIFICITY

25. SOURCE: HEALTH SURVEYS - MEDIUM COSTS Consumption of fruit and vegetables Consumption of alcohol Body Mass Index distribution in the population Physical activity PREVAL. OF CURRENT TOBACCO SMOKERS AMONG ADULTS ADULTS PREVALENCE OF TOBACCO SMOKERS AMONG 10-14 PREVALENCE OF TOBACCO SMOKERS AMONG 10-14 PREVALENCE OF EX-SMOKERS PREVALENCE OF EX-SMOKERS Prevalence population exposed to environmental tobacco smoke (ETS) Awareness of risk associated to exposure to Ultra-Violet radiations Breast cancer screening coverage Cervical cancer screening coverage Colo-rectal cancer screening coverage SOURCE: UPDATE OF DATABASES - MEDIUM COSTS PREVALENCE OF OCCUPATIONAL EXPOSURE TO CARCINOGENS PREVALENCE OF OCCUPATIONAL EXPOSURE TO CARCINOGENS PM10 EMISSIONS PM10 EMISSIONS

26. SOURCE: OTHER SURVEYS - MEDIUM COSTS % OF RADIATION EQUIPMENTS ON POPULATION % OF RADIATION EQUIPMENTS ON POPULATION % OF UNITS WITH AT LEAST 2 LINACS % OF UNITS WITH AT LEAST 2 LINACS % OF CT (COMPUTED AXIAL TOMOGRAPHY) ON POP. % OF CT (COMPUTED AXIAL TOMOGRAPHY) ON POP. PUBLIC EXPENDITURE FOR CANCER DRUGS PUBLIC EXPENDITURE FOR CANCER DRUGS Public expenditure for cancer prevention on anti-tobacco activity Public expenditure for organized mass screening programmes Private/Non profit expenditure on cancer screening Public expenditure for cancer research Private non profit expenditure for cancer research Public expenditure for population-based Cancer Registries Private/Non profit expenditure for cancer registration Prevalence of use of hormonal replacement treatment drugs Palliative care indicator

27. SOURCE: CANCER REGISTRIES - HIGH COSTS STAGE AT DIAGNOSIS: CASES RECORDED IN CRS AND STAGE AT DIAGNOSIS: CASES RECORDED IN CRS AND MEDICAL RECORDS MEDICAL RECORDS Completeness of cancer registration DELAY OF CANCER TREATMENT DEVIANCE FROM BEST ONCOLOGY PRACTICE DEVIANCE FROM BEST ONCOLOGY PRACTICE Patients treated by -Surgery -Chemotherapy -Radiotherapy -Endocrine therapy SOURCE: OTHER - HIGH COSTS Indoor radon exposure

28. COSTSSOURCEHIGH pr.MEDIUM pr. LOW COSTS or NO NEW COSTS Ind. already available 12 Pr: 1 (1) Ep: 6 (2) 0 Mv: 4 (0) 00 Ep: 1 (0) Mv: 5 (0) Sources already available 101 Sc: 10 (10) Mv: 1 (1)- MEDIUM COSTS Update 2 Pr: 2 (2)- Health survey 0 Pr: 5 (0) 13 Pr: 4 (1) Sc: 3 (3) Other surveys 30 Tr: 3 (3) Mv: 1 (0) 01 Pr: 1 (0) Tr: 1 (1) 7 Mv: 7 (7) HIGH COSTS CRs 12 Ep: 1 (1) Tr: 2 (2) 11 Ep: 1 (1) Tr: 1 (1) Other- 1 Pr 1 (1) ALL 33 Pr: 8 (3) Ep: 7 (3) 105 Sc: 10 (10) Tr: 5 (5) 1 Mv: 6 (1) 21 Pr: 6 (2) Ep: 2 (1) 32 Sc: 3 (3) Tr 2 (2) 7 Mv: 12 (7)

29. INTRODUCTION

30. 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

31. 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)

32. Other major cancers -Stomach for monitoring the decreasing trends (ethnic differences) -Head and neck-larynx, oropharynx (specifying ICD-9 code) for prevention and care. Treatment for organ preservation. For quality of life -Melanoma for prevention (early diagnosis-stage migration) Other cancers -Kaposi -Kaposi for sentinel -Mesothelioma -Mesothelioma for sentinel -Testis -Testis for rare cancer -Lymphomas and Leukaemia -Lymphomas (H for health services and NH for trends) and Leukaemia (for treatment) -All (or just Leukaemia?) childhood (0-14) cancers -All (or just Leukaemia?) childhood (0-14) cancers (for survival) rare cancer -Cervix -Cervix (for screening) We need information on incidence and mortality (note: corpus uteri vs cervix misclassification) CANCER SITES (2)

33. INDICATORS (at high priority)

34. EXPOSURE TO ASBESTOS: MESOTHELIOMA INCIDENCE AND MORTALITY TRENDS DEFINITION Incidence/Mortality variations for Pleureal cancer and/or Perithoneal cancer and/or Mesothelioma by period and by administrative unit The recent trends of mesothelioma or pleural and perithoneal cancers mortality and incidence (last 3-5 years) can be real proxies of the exposure to asbestos in the past. They indicate either increasing, decreasing or even stable rates, thus indicating a different phase of the asbestos epidemic.

35. PERSON-YEARS OF LIFE LOST DUE TO CANCER DEFINITION 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

36. POPULATION COVERED BY CANCER REGISTRIES PRESENT IN EUROCIM DATABASE DEFINITION Proportion of the national population that is covered by general population- based Cancer Registries present in the EUROCIM database in a given period (year) 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

37. NATIONAL EVALUATION IN HMP OF THE ORGANIZED SCREENING PROCESS INDICATORS The “screening group” underlined the importance to realise in HMP a national evaluations of the process indicators of the organised screening programmes activity. The group individuated the information necessary for this national evaluation: Breast and colo-rectal cancer Extension=>Availability of the programmes in the pop. and coverage Acceptance=>Participation Specificity=>Recalled, benign operations (open surgical procedures) Sensitivity=>Detected by stage Cervical cancer Extension=>Availability of the programmes in the pop. and coverage Acceptance=>Participation Specificity=>Recalled (anything no negative) Sensitivity=>Detected by CIN (histology) and invasive by stage

38. ANTI-TOBACCO REGULATIONS The indicator refers to the description of the anti-tobacco regulation. It is a multiple-indicator indicating presence or absence (Y/N) of a set of specific laws on anti-tobacco regulation. These laws should refer to: restrictions in public places prohibition in hospitals prohibition at school (or universities) prohibition in public transport vehicles on-pack warnings indications on nicotine on pack limits on tar content employeees protection law (ETS) prohibition of Tv and radio advertising flight smoke prohibition in national airline sales to children/teenagers tobacco smoke labeled as a carcinogen SOURCE: Corrao MA et al. Tobacco Control Country Profiles. American Cancer Society, Atlanta, GA (2000)

39. PREVALENCE OF OCCUPATIONAL EXPOSURE TO CARCINOGENS DEFINITION Current prevalence of occupational exposure to a given carcinogen (recognized by the “International Agency for Research on Cancer” in the classifications 1, 2A and 2B) EUROCHIPCAREX EUROCHIP suggest to update and expand the present CAREX database. This database, subsidized by the “Europe Against Cancer” Programme, estimated the occupational exposure in all European countries by agent and by industries for the period 1990-93. Updating the already available database with the same methodology we could also study if in the country the occupational exposure to carcinogens is changed in this 10 years

40. PM10 (PARTICULATE MATTER <= 10µ 3 ) EMISSIONS* PM10 (PARTICULATE MATTER <= 10µ 3 ) EMISSIONS * DEFINITION ? Percentage of population living in areas with a PM10 daily average concentration above ? microgrammes per air cubic metre “Environmental health indicators for the WHO Europe” “Percentage of population living in urban areas with a PM10 daily average above 50 microgrammes per air cubic metre” is an indicator proposed in Europe by the group “Environmental health indicators for the WHO Europe”. This group already provided a methodological definition of the indicator and also considers it as a realistic goal in the next future. EUROCHIP This indicator is the same proposed by EUROCHIP (we had not proposed any limit value, as yet) so we recommends the EC to include in the European Database also this indicator of the WHO group. The only doubt is the value of 50 microgrammes per air cubic metre because the EU directive indicates a lower value

41. INDICATORS ON TOBACCO * Prevalence of current tobacco smokers among adults Prevalence of tobacco smokers among 10-14 Prevalence of ex-smokers Prevalence of exposure to environmental tobacco smoke (ETS) EHRM EUROCHIP The project EHRM (European Health Risk Monitoring) proposed the same indicators of EUROCHIP.

42. INDICATORS ON RESOURCES CT Number of CT (Computed Axial Tomography or computed tomography scanners) equipments per 1 000 000 population OTHER Number of units with at least 2 Linear Accelerator radiation equipments per 1 000 000 population OR Number of units with a single Linear Accelerator RADIATION EQ. Number of linear accelerators per 1 000 000 population SOURCE Survey on health structures and services. The resource have to be working on 31 st December of the year prior to the survey

43. STAGE AT DIAGNOSIS: CLARIFICATIONS We need to have this information:

44. STAGE AT DIAGNOSIS: PERCENT OF CASES RECORDED IN CANCER REGISTRIES DEFINITION Proportion of cases classified with the TNM value or, in absence, with condensed-TNM SOURCE The sources are the Cancer Registries and exactly their routinary activity of registration 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.

45. STAGE AT DIAGNOSIS: PERCENT OF CASES RECORDED IN MEDICAL RECORDS DEFINITION Percentage of cancer cases registered by the clinician with the information of the presence or absence of a detection tests for metastasis SOURCE The sources are the Cancer Registries performing specific studies for major cancer sites 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 - Breast: different per stage - T1-T2: chest x-ray - T3-T4 or N+: bone-scan and liver ultrasound

46. DELAY OF CANCER TREATMENT: CONTEXT 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 symptoms to the Health System (general practitioner, hospital...)  Diagnosis: date defined specifically site per site  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 we suggest to use the date of the first diagnosis (or first medical attendance for some sites) as a reference. The treatment group suggests specifically definitions for the dates of first diagnosis (or first medical attendance) and of first treatment for 5 cancer sites: breast, colon, rectum, lung and prostate. The Methodological Group suggests to study only breast, colon and rectum for the high percentage of patients non-treated. To define these indicators, the Cancer Registries have to collect the dates of first treatment (and exactly on surgery, chemotherapy, radiotherapy or endocrine therapy)

47. DELAY OF CANCER TREATMENT: DEFINITION OF THE DATES

48. DELAY OF CANCER TREATMENT : COMMENTS Isabel Izarzugaza (Basque Country Cancer Registry) The data for the delay of cancer treatment indicator could be collected periodically for breast and colorectum. In a different period for prostate, in a different period for some other tumour. For example during 1 year every 3 years breast and colorectum, the following year (everey 3 years) for prostate and so on. Risto Sankila (Cancer Registry of Finland Why do we collect data, e.g. on delay of care, when in some parts of the expanding EU there are no resources for proper diagnostics! Who will utilise the information on 'Interval between first diagnosis and first treatment' on the EU level, if the data are only collected from a (biased?) sample of cancer clinics? (To be continued…)

49. DELAY OF CANCER TREATMENT : COMMENTS Torgil Moller (Swedish Cancer registry) I think this is a very difficult item if you wish to study the time from symptom to diagnosis and diagnosis to treatment. The date of start of symptom is often very vague and undefined, maybe preceeded by irrelevant symptoms and thus a matter of great subjectivity. I would like to suggest date of first contact with health care system leading to the diagnosis in question as the starting point. This is of course also a difficult item to collect, and necessitates maybe visits to primary health care centres and GPs, but in any case it is a date that could be defined. The next problem relates to date of diagnosis. If we are studying delay in the system, the date of histological confirmation based on surgical specimen would in many cases result in a negative delay between date of diagnosis and date of start of treatment. Thus, it is important to accept for example a positive mammography plus cytology as the date of diagnosis, or clinical investigation where no histological confirmation can be obtained, for example melanoma of the eye or tumour of the brain stem. If this problem can be solved, then this indicator might be of value. However, it could never be based on a routine data collection but must be collected now and then within well defined projects.

50. deviance to best practice guidelines comply with guidelines rather best practice collapse the guidelines themselves into a few simple items should refer to patients potentially eligible for treatment The indicator is aimed to reflect the deviance to best practice in oncology. It implies the existence of specific professional guidelines and express something related to the attitude to comply with guidelines rather best practice. To give an indication on the patients treated according to the guidelines, we need to collapse the guidelines themselves into a few simple items. As guidelines usually refer to cases that can be potentially cured, the indicator should refer to patients potentially eligible for treatment according to guidelines. “deviation” Defining the non- adherence is easier and more robust An examination of the “deviation” from guidelines is usually more robust than a look at their “adherence”. The medical attitude in following guidelines may vary considerably and thus, is very difficult to classify. Defining the non- adherence is easier and more robust. DEVIANCE FROM BEST ONCOLOGY PRACTICE: CONTEXT

51. Example 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)

52. DEVIANCE FROM BEST ONCOLOGY PRACTICE: CASES BREAST  Proportion of patients receiving post-operative breast radiotherapy after breast conserving surgery (by age)  Proportion of patients with pathological or clinical tumour site 3cm or less receiving conserving surgery (by age) COLON  Proportion of patients with Dukes C receiving adjuvant chemotherapy RECTUM  Proportion of patients receiving pre-operative radiotherapy PROSTATE  Proportion of patients receiving radical prostatectomy (by age)  Prop. of patients receiving radical radiotherapy by external beam or brachytherapy LUNG  Proportion of patients with non small cell undergoing radical surgery  Proportion of patients undergoing staging with thoracic CT scanning CERVIX  Prop. of patients with FIGO-stage III/IV in cervix cancer receiving chemoradiotherapy (by age)  Prop. of patients undergoing WERTHEIM-MEIGS hystorectomy by FIGO-stage (including insitu) (by age)

53. DEVIANCE FROM BEST ONCOLOGY PRACTICE: COMMENTS Isabel Garau (Mallorca Cancer Registry) Guidelines on diagnostic procedures may vary from country to country and even for the areas covered by the cancer registries, but, when defined, (and I think that is possible to define guidelines on this point) I think that cancer registries could be able to collect these information. But define guidelines for treatment into a simple way could be very difficult (specially for the most interesting tumours) and, even if defined, I'm not sure that cancer registries would be able to collect this information. I propose a reflection and, if necessary, a pilot study on this indicator. Torgil Moller (Swedish Cancer registry) Indicator “Deviance from best oncology practice” also needs a lot of definition and could maybe only be applied in certain situations where there is a common agreement on the treatment method, such as breast conserving surgery, preoperative radiotherapy in rectal carcinoma, etc. This indicator must also be collected only within well defined projects, but could be of great importance

54. INDICATORS (at medium priority)

55. CONSUMPTION OF FRUIT & VEGETABLES * DEFINITION Distribution of the population by daily portion of all fruits and vegetables (excluding potato) EFCOSUM EFCOSUM (European Food Consumption Survey Method) underlined :  DAFNE is the only database providing comparable data (household)  EPIC develops methods to collect data focused on cancer and adults  Common guidelines are necessary in order to have comparable data  Data can be made comparable at the “raw edible” ingredient level  t is really important have comparable data on vegetables (potatoes excluded), fruits (fruit juices excluded), bread, fish (stellfish included), some nutrients (saturated fatty acids, total fat, ethanol) and some biomarkers (folate, vitamin D, iron, iodine, sodium) EUROCHIP EUROCHIP is aware of the difficulties to have comparable data on dietary habits but also of the real importance to have this information as the consumption of fruit & vegetables is a major dietary protective factor for cancer. For this reason EUROCHIP recommends the carrying on of projects like EFCOSUM, DAFNE and EPIC.

56. CONSUMPTION OF ALCOHOL * DEFINITION Pure alcohol daily consumption ECAS ECAS (European Comparative Alcohol Study) underlined:  Total alcohol consumption per capita by beverage categories is an important indicator for following developments in the EU public health  EU should prepare an authoritative report on tot. alcohol cons. according to beverage categories and off- and on-premises sales  EU should also prepare a report on how basic figures for alcohol cons. are and have been collected in different studies and how units used for estimating individual consumption have been converted into litres  The EU should carry out such surveys on a regular basis in order to monitor developments in drinking habits EUROCHIP EUROCHIP agreed with the ECAS recommendations to the EU and underlines the importance to have a common European guideline in order to have comparable data ECAS ECAS (European Comparative Alcohol Study) underlined:  Total alcohol consumption per capita by beverage categories is an important indicator for following developments in the EU public health  EU should prepare an authoritative report on tot. alcohol cons. according to beverage categories and off- and on-premises sales  EU should also prepare a report on how basic figures for alcohol cons. are and have been collected in different studies and how units used for estimating individual consumption have been converted into litres  The EU should carry out such surveys on a regular basis in order to monitor developments in drinking habits EUROCHIP EUROCHIP agreed with the ECAS recommendations to the EU and underlines the importance to have a common European guideline in order to have comparable data ECAS ECAS (European Comparative Alcohol Study) underlined:  Total alcohol consumption per capita by beverage categories is an important indicator for following developments in the EU public health  EU should prepare an authoritative report on tot. alcohol cons. according to beverage categories and off- and on-premises sales  EU should also prepare a report on how basic figures for alcohol cons. are and have been collected in different studies and how units used for estimating individual consumption have been converted into litres  The EU should carry out such surveys on a regular basis in order to monitor developments in drinking habits EUROCHIP EUROCHIP agreed with the ECAS recommendations to the EU and underlines the importance to have a common European guideline in order to have comparable data

57. BODY MASS INDEX DISTRIBUTION IN THE POPULATION * DEFINITION Percentage of obese and overweight population by BMI (Body Mass Index) EHRM The project EHRM (European Health Risk Monitoring) underlined the importance to have information on BMI in the EU. EUROCHIP It proposes the same indicator proposed by EUROCHIP. BMI values BMI values: 25-30 Kg/m2: Overweight 30 + Kg/m2: Obesity

58. PHYSICAL ACTIVITY * DEFINITION Proportion of people carrying out physical activity (moderate and strenuous activities) by number of hours per working days or holidays EUPASS EUPASS (European Physical Activity Surveillance System) recommended an European survey on physical activity (IPAQ) including various questions. The EUROCHIP indicator refers to the question A2 in the IPAQ: A2. How much time on average do you spend per day (24 hours) on A2. How much time on average do you spend per day (24 hours) on : (Round up time to full or half hours – Like 0,5 Hrs. This concerns only physical activities or efforts. Please try to distribute all 24 hours over the 5 categories) Mon-FriSat-Sun Sleeping, resting __ __, __h__ __, __h Sitting __ __, __h__ __, __h (like at the office, in the car, watching television, eating, reading) Light activities __ __, __h__ __, __h (like cooking, walking at low pace, shopping, tiding up the room, body care, selling) Moderate activities __ __, __h__ __, __h (like jogging, renovating, cleaning, construction work) Strenuous activities __ __, __h__ __, __h (like carrying heavy weights, strenuous gardening, chopping wood, competitive sport, ball games) Total 24,0h 24,0h

59. AWARENESS OF RISK ASSOCIATED TO EXPOSURE TO UV RADIATIONS DEFINITION Proportion of persons reporting to be aware (or not aware) with the UV radiation and reporting to behave (or not to behave) consistently RATIONALE Skin cancer incidences are increasing. Exposure of UV radiations is the major cause of skin cancers and it is a behavioural trait. Awareness is the only control measure SOURCE Health survey From EHRM (European Health Risk Monitoring) project leader From EHRM (European Health Risk Monitoring) project leader: Concerning the indicator of ultraviolet raditions, are you proposing a questionnaire item for collecting the information? I do not know if there are validated questions which could be used.

60. PREVALENCE OF USE OF HORMONAL REPLACEMENT TREATMENT DRUGS DEFINITION Hormonal Replacement Treatment drug use in the female population from 50 to 69 The indicator refers to the number of prescriptions HRT in women (indicator proposed by the pharmaceutical HMP project)

61. SCREENING COVERAGE INDICATORS BREAST Percentage of women aged between 40-49, 50- 69 and 70-74 examined by mammography in the recommended interval CERVIX Percentage of women aged 20-29, 30-59 and 60+ examined by citology in the last 3-5 years COLO-RECTAL Percentage of persons aged 50-74 who have had a fecal occult-blood test in the last 2 years CONTEXT It considers the effects of both organized and opportunistic screenings SOURCE Organized screening programme databases for countries with national programmes. In this case we need the information on the frequency of mammography examinations for females who did not comply to participate to the screening. For the other countries data should be collected by survey and we need also information from regional programmes

62. INDICATORS ON PALLIATIVE CARE INDICATOR 1 Use of morphine units per cancer patients INDICATOR 2 Beds in palliative units in specialist level and in primary care level INDICATOR 3 Number of patients who have got palliative radiotherapy or fractions of radiotherapy as palliative purpose

63. INDICATORS ON PUBLIC/PRIVATE EXPENDIT. FOR CANCER PREVENTION Public expenditure for cancer prevention on anti-tobacco activity (campaigns, initiatives, facilities and so on against tobacco) CR Public and Private/Non profit expenditure devoted to support population-based cancer registration (SOURCE: question to CR) SCREENING Public and Private/Non profit expendit. for cancer organized mass screening programs by site (SOURCE: question to EBCN) RESEARCH Public expenditure for cancer clinical trials not supported by pharmaceutical companies, fundamental research and contributions from International Organisations Private non profit expenditure for cancer research regarding charity organizations (specialized in cancer) reviewing reasearch SOURCE: survey

64. COMPLETENESS OF CANCER REGISTRATION DEFINITION Completeness measure proposed in: Bullard J, Coleman MP, Robinson D, LUTZ JM, Bell J, Peto J. Completeness of cancer registration: a new method for routine use. British Journal of cancer (2000) 82(5), 1111-1116 FORMULA where s(t i ) = probability that a cancer patient is still surviving at time t i after diagnosis, m(t i )= probability that the death certificate of a patient who dies in the time interval (t i, t i+1 ) after diagnosis includes a mention of cancer u(t i )= probability that a patient surviving until time t i ) after diagnosis is still unregistered

65. PATIENTS TREATED BY SURGERY, CHEMOTHERAPY... It is not clear what the indicator would like to present. It should be interpreted generally as “frequency of a specific treatment”. It is not clear the rationale and the added value of the indicator: if we have a good indicator on deviance from best oncology practice this indicator should became redondant CONTEXT Percentage of patients treated with surgery, chemotherapy and radiotherapy. SOURCE The sources should be the Cancer Registries. We suggest specific studies on sample of cases in order to collect information on therapy and stage, such as the EUROCARE High Resolution Studies

66. INDOOR RADON EXPOSURE DEFINITION Percentage of people living in houses with radon gas concentration above 200Bq/m 3 The source will be national ad hoc surveys. In the 90s Each European country organized a survey to know the radon levels in dwellings in their territory. One of the results was the percentage of dwellings with a radon level over 200Bq/m 3Bibliography Bochicchio F et al. Radon in indoor air. Luxembourg, Office for Official Publications of the European Communities, 1995 (European Collaborative Action: Indoor air quality and its impact on man, No. 15)