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. GROUP OF SPECIALISTS on SCREENING Edinburgh, 20th November 2002 EUROCHIP Chairperson: Dr Elena Riza

3. INTRODUCTION TO THE MEETING Dr. Elena Riza

4. AIMS OF THE MEETING An updated list of indicators for “screening” domain A consensual classification of these indicators by priority An updated DESCRIPTIVE FORM for each indicator Indications on the methodological problems Indications on the availability of these indicators

5. SUBJECTS OF THE MEETING Verification of the completeness of the list of indicators Discussion about priorities of the indicators Discussion/modification of the forms of the indicators of this domain Decision of indicators to include in the group “performance indicators of organised programs “

6. CONSIDERATIONS Participants have to consider that: indicators at high priority should be in a limited number; indicators should be able to suggest actions to reduce inequalities and to promote health; indicators should refer to the “epidemiology and cancer registration” domain indicators have been developed considering 3 axes: 1) the natural disease’s history (prevention, screening, diagnosis, treatment, surveillance, end results) 2) indicator groups as suggested by the ECHI HMP project (demographic and social-economic factors, health status, determinant of health, health system) 3) cancer sites

7. EUROCHIP PROJECT: PRESENTATION Dr. Andrea Micheli

8. 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

9. 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

10. Www.istitutotumori.mi.it/project/eurochip/homepage.htm 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 FRAMEWORK OF THE PROJECT

11. Www.istitutotumori.mi.it/project/eurochip/homepage.htm 130 130 CANCER SPECIALISTS ARE INVOLVED IN EUROCHIP 13 13 INTERNATIONAL MEETINGS HELD ALL ALL COUNTRIES OF THE EUROPEAN UNION ARE PARTICIPATING IN THE PROJECT FIRST AND FUTURE STEPS Next steps:  Groups of Specialists in each of five domains (prevention, screening, data registration and epidemiology, macro-health variables, and clinical aspects and treatment) discuss the indicators at the European level.  Final meeting at which the final selection of indicators will be drawn up

12. Www.istitutotumori.mi.it/project/eurochip/homepage.htm RESULTS 158 PRELIMINARY LIST OF 158 INDICATORS 39 39 INDICATORS AT HIGH PRIORITY 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

13. EUROCHIP FINAL RESULTS (AT THE END OF STEP 3) For each indicator at high priority 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

14. DESCRIPTION

16. THOROUGHNESS OF THE INDICATOR LIST Dr. Franco Berrino

17. LIST OF EUROCHIP HIGH PRIORITY INDICATORS 1.Tobacco consumption 2.Exposure to asbestos PREVENTION 5.Breast cancer screening coverage 6.Cervical cancer screening coverage 7.Performance indicators of organized screening programmes organized screening programmes SCREENING 8.Interval between first 8.Interval between first symptoms and diagnosis symptoms and diagnosis 9.Interval between diagnosis 9.Interval between diagnosis and first treatment and first treatment 10.Radiation equipment 11.% of centres with at least 2 radiation equipments 2 radiation equipments 12.Doctors by specialization 13.Compliance with guidelines 14.Pain units and hospices 15.Use of morphine TREATMENT AND CLINICAL ASPECTS 3.Coverage of cancer registration 4.Stage at diagnosis EPIDEMIOLOGY AND CANCER REGISTRATION 16.Total National Expenditure on Health for cancer on Health for cancer 17.Total Public Expenditure on Health for cancer on Health for cancer MACRO SOCIAL- ECONOMIC VARIABLES

18. Www.istitutotumori.mi.it/project/eurochip/homepage.htm PREVENTION Tobacco consumption 1)Tobacco consumption 2)Consumption of fruit and vegetable * 3)Consumption of alcohol * 4)Body Mass Index * Exposure to asbestos 5)Exposure to asbestos 6)AIDS incidence * 7)Prevalence of hepatitis B/C * EPIDEMIOLOGY AND CANCER REGISTRATION Coverage of cancer registration 8)Coverage of cancer registration 9)Incidence rates * 10)Survival rates * 11)Prevalence proportion * 12)Mortality rates * Stage at diagnosis 13)Stage at diagnosis 14)DCO * 15)Incidence / mortality * 16) % of istological cases * INDICATORS AT HIGH PRIORITY (1) * Connected with other HMP projects

19. Www.istitutotumori.mi.it/project/eurochip/homepage.htm INDICATORS AT HIGH PRIORITY (2) SCREENING Breast cancer screening coverage 17)Breast cancer screening coverage Cervical cancer screening coverage 18)Cervical cancer screening coverage Performance indicators of organized screening programmes 19)Performance indicators of organized screening programmes TREATMENT AND CLINICAL ASPECTS Interval between first symptoms and diagnosis 20)Interval between first symptoms and diagnosis Interval between diagnosis and first treatment 21)Interval between diagnosis and first treatment Radiation equipment 22)Radiation equipment % of centres with at least 2 radiation equipments 23)% of centres with at least 2 radiation equipments Doctors by specialization 24)Doctors by specialization Compliance with guidelines 25)Compliance with guidelines 26)Patients treated by surgery * Pain units and hospices 27)Pain units and hospices Use of morphine 28) Use of morphine * Connected with other HMP projects

20. Www.istitutotumori.mi.it/project/eurochip/homepage.htm INDICATORS AT HIGH PRIORITY (3) MACRO SOCIAL-ECONOMIC VARIABLES 29)Education level attained * 30)Deprivation index * 31)Income * 32)Gross Domestic Product * 33)Total Social Expenditure 34)Total National Expenditure on Health * Total National Expenditure on Health for cancer 35)Total National Expenditure on Health for cancer 36)Total Public Expenditure on Health * Total Public Expenditure on Health for cancer 37)Total Public Expenditure on Health for cancer 38)% elderly in 2010-2020-2030 39)Age distribution of population * Connected with other HMP projects

21. PRIORITY LEVELS A A Direct indicator – Important – With or without any problem B B Indirect indicator – Important – With or without any problem C C Potentially useful but with presenting a great deal of problems D D Very low priority – Irrelevant

22. SCREENING - Breast cancer screening coverage - Cervical cancer screening coverage - Performance indicators of organized screening programmes: -Screening volume -Screening recall rate -Screening detection rate -Screening localized cancers -Screening positive predictive value -Screening benign/malignant biopsy ratio -Screening conservative vs radical treatment -Screening interval between detection and treatment -Screening ‘interval cancers’ -Screening sensitivity -Screening specificity DO YOU WANT SOMETHING ELSE AT HIGH PRIORITY?

23. ARE THESE PRIORITIES OK? A - Breast cancer screening coverage - - Cervical cancer screening coverage Performance indicators of organized - Performance indicators of organized screening programmes screening programmes C - Occult blood - PSA Colonoscopy - Colonoscopy ? - Incidence of DCIS and LCIS - Incidence of DCIS and LCIS (breast cancer) - Incidence of insitu carcinoma of cervix - Incidence of adenocarcinoma in polyp - Incidence of A stage for prostate

24. BREAST CANCER SCREENING COVERAGE Dr. Nieves Ascunce Elizaga

25. DESCRIPTIVE FORM BREAST CANCER SCREENING COVERAGE Diffusion of the mammography among females between 40 and 70 years old CONTEXT SOURCE STANDARDIZATION VARIABILITY VALIDITY METHODOLOGICAL FORM National organized screening programmes. Survey for other countries No problems

26. Indicator characteristics Both organized and opportunistic screening Distintion between - countries with national organized screening: we need also information on activity of women who rejects organized screening - countries with regional programmes: we need a national survey Women ages: 40-70. - Which is the role to decide these ages? - Are they correct? Periodicity of the mammography exam: 2 years - Is it correct?

27. CERVICAL CANCER SCREENING COVERAGE Dr. Elena Riza

28. CERVICAL CANCER SCREENING COVERAGE Diffusion of the pap smear examination among females between 25 and 64 years old CONTEXT SOURCE STANDARDIZATION VARIABILITY VALIDITY National organized screening programmes. Survey for other countries No problems DESCRIPTIVE FORMMETHODOLOGICAL FORM

29. Indicator characteristics Both organized and opportunistic screening Distintion between - countries with national organized screening: we need also information on activity of women who rejects organized screening - countries with regional programmes: we need a national survey Women ages: 25-64. - Which is the role to decide these ages? - Are they correct? Periodicity of the pap-smear exam: 3 years - Is it correct?

30. PERFORMANCE INDICATORS OF ORGANIZEDSCREENINGPROGRAMMES Dr. Elena Riza

31. Performance indicators of organized screening programmes: -Screening volume -Screening recall rate -Screening detection rate -Screening localized cancers -Screening positive predictive value -Screening benign/malignant biopsy ratio -Screening conservative vs radical treatment -Screening interval between detection and treatment -Screening ‘interval cancers’ -Screening sensitivity -Screening specificity INDICATORS

32. SCREENING VOLUME Coverage of organized screening programmes CONTEXT SOURCE STANDARDIZATION VARIABILITY VALIDITY Organized screening programmes. No problems Relevant in countries without national coverage No problems DESCRIPTIVE FORMMETHODOLOGICAL FORM

33. SCREENING RECALL RATE Context: The number of persons recalled for further assessment as a proportion of all persons who had a specific screening test. Data collection: Recall refers to the physical recall of the patient to the screening unit either because of a technical inadequacy (technical recall) or for the clarification of a perceived abnormality detected at the screening examination (recall for further assessment).

34. SCREENING DETECTION RATE Context: The number of cancers detected in the screening programme as a proportion of all the screening tests performed Data collection: To calculate the overall detection rate, one should include cancers detected by screening round. Cancers detected in intermediate exploration should be assigned to a specific screening round

35. SCREENING LOCALISED CACNERS Context: Proportion of localised cancers of the total screen-detected cancers POSITIVE PREDICTIVE VALUE Context: The proportion of persons who have the cancer in question and who are screened positive Data collection: In practice, the denominator refers to the patients recalled for further assessment following a positive screening examination

36. BENIGN/MALIGNANT BIOPSY RATIO Context: The ratio of pathologically-proven benign cases to the malignant ones surgically removed within the screening programme CONSERVATIVE VS RADICAL TREATM. Context: The number of persons to whom cancer was detected as a result of a screening test and to whom conservative treatment was offered (e.g. chemotherapy, radiotherapy, conserving surgery) as opposed to those to whom radical treatment was performed (e.g. mastectomy, hysterectomy)

37. INTERV. BETWEEN DETECTION AND TREATM. Context: The time between the date of the result of the screening test to the date the patient receives treatment SCREENING INTERVAL CANCER Context: A primary cancer which has been diagnosed in the time interval between the most recent screening test which was negative for malignancy and next screening test, or within the specified time interval for the next screening test in the case the woman has reached the screening age upper limit

38. SCREENING SENSITIVITY Context: The probability that the screening test correctly identifies people with the preclinical disease as positive Data collection: It is calculated as the ratio of true positive screening tests to the total of positive cases, whether or not identified by means of a screening test

39. SCREENING SPECIFICITY Context: It is the probability that a screening test correctly identifies people without the preclinical disease as negative Data collection: It is calculated as the ratio of true negative screening tests to the total of true negatives and false positives

40. EUROPEAN COMMISSION PUBLIC HEALTH PROGRAMS Dr. Andrea Micheli

41. PUBLIC HEALTH IN EUROPE the European past and next strategy FOCUS ON CANCER past/present in HMP: EUROCHIP and CAMON next: Working Party

42. Priority areas of the public health programme General health policy Health determinants Health threats Health information By Dr. Tapani Piha

43. Health information Bringing programmes together Cancer Injury Health monitoring Pollution Aids Rare diseases -2002 2003- By Dr. Tapani Piha

44. Health information Bringing programmes together Cancer Injury Health monitoring Pollution Aids Rare diseases -2002 2003- By Dr. Tapani Piha

45. Public health programme Implementation focus European added value Large scale (in content and geographical coverage) multi-annual and multidisciplinary Lead to sustainable results and outputs Relevant and contribute to policy development Attention to the evaluation of the process and results By Dr. Tapani Piha

46. Stages in data processing Stage 1 Data definition and quality development Stage 2 Support to data collection at national level Stage 3 Data collection, processing and storage at EU level Stage 4 Analysis, advice, reporting, informing and consulting Stage 5 Mechanisms for exchanging, promoting and disseminating results By Dr. Tapani Piha