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 EPIDEMIOLOGY AND CANCER REGISTRATION Murcia, 12th-13th November 2002 EUROCHIP Chairperson: Dr Carmen Navarro

3. INTRODUCTION TO THE MEETING Dr. Carmen Navarro

4. AIMS OF THE MEETING An updated list of indicators for “epidemiology and cancer registration” 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 The list of tumour sites to include in EUROCHIP Suggestions on the future role of Cancer Registries as sources of the EUROCHIP indicators

5. SUBJECTS OF THE MEETING FIRST DAY Verification of the completeness of the list of indicators Discussion about priorities of the indicators Discussion on cancer sites to include in EUROCHIP Discussion/modification of the forms of the indicators of this domain SECOND DAY Focus on the future steps of the European Commission Public Health Programmes Discussion on the role of Cancer registries as source of the indicators (with some examples) Next EUROCHIP steps

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. Andrea Micheli

17. 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

18. 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

19. 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

20. 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

21. INDICATORPRIORITY Dr. Willi Oberaigner

22. 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

23. EPIDEMIOLOGY AND CANCER REGISTRATION - Coverage of cancer registration Epidemiological measures - - Incidence rates * - Survival rates * - Prevalence proportion * - Mortality rates * Stage at diagnosis - Stage at diagnosis Cancer registration quality: -DCO * -Incidence / mortality * -% of istological cases * DO YOU WANT SOMETHING ELSE AT HIGH PRIORITY? * Connected with other HMP projects

24. ARE THESE PRIORITIES OK? A - Coverage of cancer registration - - Incidence rates * - Survival rates * - Prevalence proportion * - Mortality rates * Stage at diagnosis - Stage at diagnosis - Person-years life lost due to cancer - Completeness - DCO * - Incidence / mortality * - % of istological cases * C - Mortality within 30 days - Disease free survival Survival after recurrences - Survival after recurrences B - Diagnostic certainty (C factor) - % ER available - % ER available (breast cancer) % PR available - % PR available (breast cancer) * Connected with other HMP projects

25. TUMOURSITES Dr. Eugenio Paci

26. The other axis is the Type of cancer for which indicators are required, e.g.: All cancers combined without non melanoma skin cancer Major cancers (in terms of incidence or prevalence): Lung Breast Colorectal Prostate Stomach Head and neck (especially relevant for Southern Europe) Melanoma Sentinel cancers[1]:[1] (Kaposi) Mesothelioma (for etiology) Testis Hodgkin ALL childhood cancers (for treatment) Cervix (for etiology and early diagnosis) [1] Chosen for their avoidability, curability, detectability (…). [1]

27. Measures of occurrence Absolute number (EU, per country) Crude rate (EU, per country) Cumulative rate (by 0 to, or 50 to xx) Age-adjusted rate Survival rate (1, 5, 10) Survivors (childhood and..) Prevalence (Total, 1, 3,5 years) Trends (annual and period variation)

28. All sites Total burden of cancers in Europe and for each country, for childhood and adults separately. Prevalence rate is important. Trends estimation (age adjusted) as indicator of success or natural changes Long survivors relevant in sickness perception Crude vs adjusted rate: success vs burden

29. All sites All sites or site specific changes in occurrence rates are usually of difficult interpretation Specific age-group at risk or especially exposed to prevention or risk factors Ex: trends in lung cancer in new cohorts

30. The impact of preventive action All sites minus ….. To assess the contribution of a preventable cancer (minus lung cancer or the % attributable to smoking …. Or impact of all screening programmes … or ), by sex or specific age

31. All sites All cancer mortality as indicator of the burden of end of life care. The palliative care need, the technological impact of end of life care, the cost ( human and economic ) of the last year of life.

32. Major cancers : by incidence, mortality or survival? Breast Cancer : incidence is increasing (screening) and survival improving Lung cancer : age adjusted incidence is decreasing and survival is continuing to be very poor Prostate cancer : incidence and survival are increasing, but still a relevant cause of mortality. What happens? Colorectal cancer: increasing occurrence and early diagnosis. Are there true variations in mortality trends ?

33. Specific sites Trends in mortality or incidence can not be easily attributed to one preventive action or risk factor The major part of screening programmes (breast, colorectal cancer) needs long time in order to show an impact The impact is expected on specific age groups and evaluation of age adjusted trends might be not sensitive enough

34. Rare cancers What is rare? The relevance of risk factors for specific rare conditions Mesothelioma and asbestos exposure Leukemia and NHL and occupational and rnvironmental exposures S. Kaposi and HIV

35. Rare Cancers If the exposure is well known risk factor, the exposure indicator is the most important Treatment and care access, support are crucial in rare diseases and usually related to socioeconomic condition. It is important to assess the communication system in each country in order to evaluate access

36. 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

37. 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 DISCUSSION ON CANCER SITES

38. 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 we have to choose the sites particularly related with treatment and burden -All (or just Leukaemia?) childhood (0-14) cancers (for survival) rare cancer we have to choose the sites particularly related with treatment and burden -Cervix -Cervix (for screening) We need information on incidence and mortality (note: corpus uteri vs cervix misclassification)

39. COVERAGE OF CANCER REGISTRATION Dr. Andrea Micheli

40. DESCRIPTIVE FORM COVERAGE OF CANCER REGISTRATION Population-based Cancer registry coverage by duration of registration. Example CONTEXT SOURCE STANDARDIZATION VARIABILITY VALIDITY METHODOLOGICAL FORM IARC, ENCR and National Cancer Registry Associations No problems

41. Example of COVERAGE OF CANCER REGISTRATION The values of the coverage of cancer registration are indicative: % national coverage of cancer registration COUNTRY20001995199019801970 D100 M 7000 E100 503015 Sl100 70 S100 705030

42. Indicator characteristics Only population-based Cancer Registries By site for Cancer Registries –Which are these sites? All Colorectal cancers Digestive cancers Breast and gynaecological cancers Childhood cancers Haematological malignancies Others? DESCRIPTIVE FORM

43. STAGE AT DIAGNOSIS Dr. Carmen Martinez

44. Staging cancer To assess the size of a tumour and its extent of involvement throughout the body

45. Staging Systems For “all” cancers SEER Summary Staging: NCI (USA) TNM System: UICC /AJCC

46. SEER Summary Staging In situ Localized Regional – direct extension to adjacent organs or tissues – lymph node involvement – direct extension and lymph node involvement Distant Metastasis

47. TNM System. General rules T -- Extent of the primary tumour N -- Absence or presence and extent of regional lymph node metastasis M -- Absence or presence of distant metastasis

48. Condensed TNM. ENCR It should be based in all (the best) available clinical and pathological information

49. Condensed TNM Tabulation of results Tumour localized:TL, N0, M0 Local Spread:TA, N0, M0 Regional Spread:any T, N +, M0 Advanced cancer: Metastatic any: T, any N, M+ Non-resectable tumours: MX Unknown Extent

50. Condensed TNM Certainty - Factor C-factor: certainty of the information on wich the TNM staging was based C1. Standard methods (palpation, radiography) C2. Special diagnostic means: imaging: CT scan, ultrasound, lymphograqphy... endoscopic biopsy or cytology Cp- Postsurgical or autopsy histopathology

51. Staging Systems For some cancers TNM is not used Lymphomas Leukaemia Brain Chilhood cancers

52. Stage at diagnosis Descriptive Form

53. Stage at diagnosis Cancer type: Solid tumours Relevance: Diagnosis Category: Health status

54. Stage at diagnosis Generic definition: % of incident cases classified with Condensed TNM Classification by site Rationale: Early/late diagnosis Utility: Determinant of treatment and prognosis

55. Stage at diagnosis Caveat: “T localized”: differences by site For most tumours: T1 + T2 For breast or skin: T1 + T2 +T3 For ovary: T1

56. Stage at diagnosis Gender: Male and female separately Age: By age class

57. Stage at diagnosis Modalities of classification: Condensed TNM

58. Stage at diagnosis Methodological Form

59. Stage at diagnosis Indicator context Percentage of cancer cases classified with condensed TNM by site, sex and age. 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.

60. Stage at diagnosis Indications on data collection The sources are the Cancer Registries performing specific studies for major cancer sites. At the moment, the TNM data collection is not usual in the cancer registration. Sometimes, we have information on TNM classification for areas covered by organized screening programs and only for the screening sites.

61. Stage at diagnosis Standardization Recommend to use the Condensed TNM classification proposed by the ENCR (European Network of Cancer Registries). Moreover we need the C Factor for examining metastatic cases

62. Stage at diagnosis Variability within countries The variability within countries might be relevant.

63. Stage at diagnosis Validity Cancer Registry data can be validated using specific studies such as the “EUROCARE High Resolution Studies”.

64. Stage at diagnosis Suggestions to the European Commission To subsidize Cancer Registries in order to collect systematically data on condensed TNM. In the first years we will have to recommend clinician to indicate the stage in the clinical reports

65. TNM System. C - Factor Certainty factor: validity classification according to the diagnostic methods employed C1- Standard methods (palpation, radiography) C2- Special diagnostic means (CT, biopsy...) C3- Surgical explorations, including biopsy C4- Definitive surgery with pathological exam C5- Autopsy

66. Condensed TNM Scheme ENCR Recommendations T : L (Localised) A (Advanced) X N : 0 + X M : 0 + X

67. INDICATORS OF QUALITY OF CANCER REGISTRATION Dr. Carmen Navarro

68. DCN (Death Certificate Notification) & DCO (Death Certificate Only)

69. Completeness (Parkin et al Method) 1 (1-DCN) + (DCN/M:I)

70. EUROPEAN COMMISSION PUBLIC HEALTH PROGRAMS Dr. Andrea Micheli

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

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

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

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

75. 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

76. 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

77. INDICATOR OF DELAY OF CARE Dr. Gemma Gatta

78. DELAY OF CARE: PHASES OF THE DISEASE HISTORY SYMPTHOM: there is not an event and it is not strictly definid on time FIRST MEDICAL ATTENDANCE: date in which patient reports his sympthoms to the Health System DIAGNOSIS: date defined using the conventional date index of Cancer Registries FIRST TREATMENT: Date of the beginning of primary treatment DEFINITIVE TREATMENT: ?

79. INDICATORS ON DELAY OF CARE: INTERVAL BETWEEN FIRST SYMPTOMS AND DIAGNOSIS and INTERVAL BETWEEN DIAGNOSIS AND TREATMENT We suggest to use the distance between first medical attendance and diagnosis and between diagnosis and first treatment CONTEXT SOURCE STANDARDIZATION VARIABILITY VALIDITY Cancer Registries The dates have to be in the form DD/MM/YY We need exact definitions of the phases of the disease history for some cancer sites Relevant A lot of problems DESCRIPTIVE FORMMETHODOLOGICAL FORM

80. FIRST MG RESULTS study colon, cervix and breast cancers distinguish between screening clinical diagnosis use the date of pathological confirmation as the date of diagnosis use the date of first medical attendance as the first stage of the disease A1.4Tr.2 interval is from date of pathological confirmation and start of first treatment The sources are the Cancer Registries. For frequent cancer sites as breast, cervix and colorectal a sample of cases could be studied. To define these intervals, Cancer Registries have to collect data in the form DD/MM/YY with the consequent attention at the privacy problem. However, the indicator is an average interval without any problem of privacy.

81. MG Results: FIRST MEDICAL ATTENDANCE The group defines this event as the first medical attendance reporting symptoms for the cancerous disease. For cases discovered by screening procedures, either organized or spontaneous (breast, cervix, colorectum), we consider positive mammography, PAP smear, and colonscopy as first medical attendance. People at high risk or presenting suspicious symptoms who are under observation with repeated examinations are assimilated to spontaneous screening with respect to first medical attendance definition

82. MG Results: PATHOLOGICAL CONFIRMATION Pathological confirmation (histology) is assumed as the major clinically significant event associate to diagnosis. Patients following their first medical attendance are addressed to perform a diagnostic procedure including biopsy. Pathological confirmation following biopsy defines diagnosis and is a basic information for treatment. Cases discovered by screening follow the same diagnostic procedure and the pathological confirmation defines the diagnosis. This is valid for breast, colorectal, and cervical cancers either screening or symptomatic patients

83. MG Results: FIRST TREATMENT First treatment represents the start of a defined treatment for a patient. This would include any treatment that that is defined as a starting point in a protocol, not always the principal treatment. As an example, radiotherapy is sometimes the first treatment before surgery for cervical cancers, and treatment with tamoxifen before surgery for breast cancer. We will consider as first treatment radiotherapy and tamoxifen, instead of surgery that is the principal treatment, in these cases

84. COMPLIANCEWITHGUIDELINES Dr. Carmen Martinez

85. COMPLIANCE WITH GUIDELINES We need to collapse the guidelines in a few items CONTEXT SOURCE STANDARDIZATION VARIABILITY VALIDITY Cancer registries Studies should be conducted using a common protocol and criteria Relevant To use studies as “High resolution studies” DESCRIPTIVE FORMMETHODOLOGICAL FORM

86. First MG Results 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. 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.

87. 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 the majority receiving 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)

88. SOURCE The indicator is a new indicator The sources should be the Cancer Registries. The Methodological group suggests specific studies on sample of cases in order to collect information on therapy and stage, such as the EUROCARE High Resolution Studies

89. FINAL DISCUSSION

90. 1.All cancers combined without non melanoma skin cancers 2.Major cancers (in terms of incidence or prevalence) -Lung -Breast -Colorectal -Prostate -Stomach -Head and neck-larynx, oropharynx (specifying ICD-9 code) -Melanoma 3.Other cancers -Kaposi -Mesothelioma -Testis -Lymphomas (H and NH) and Leukaemia -All (or just Leukaemia?) childhood (0-14) cancers -Cervix (note: corpus uteri vs cervix misclassification) LIST OF CANCER SITES

91. A - Coverage of cancer registration - - Incidence rates * - Survival rates * - Prevalence proportion * - Mortality rates * Stage at diagnosis - Stage at diagnosis - Person-years life lost (NEW) - Completeness of the registration (NEW) (DCN/DCO *, Incidence / mortality *) - % of microscopical cases *C - Mortality within 30 days - Disease free survival Survival after recurrences - Survival after recurrences B - Diagnostic certainty (C factor) - % ER available - % ER available (breast cancer) % PR available - % PR available (breast cancer) PRIORITIESPRIORITIESPRIORITIESPRIORITIES

92. Cancer type: Breast, colorectal cancer Relevance: Diagn., treatm., surv. and end results Generic definition: proportion of incidence cases classified with the TNM value or, in absence, with condensed-TNM. (The non-metastatic cases will be classified by presence or absence of a specific test for the detection of the metastasis) Rationale: Early/late diagnosis Utility: Determinant of treatment and prognosis Caveat: problems Modalities of classification: TNM or cond. TNM (+ non-metastatic cases with/without detection test) By sex and by age STAGE AT DIAGNOSIS Descr. Form

93. Suggestions to the EC: to subsidize CR. In the first years we will have to recommend clinicians to indicate the stage in the clinical reports Source: CR with High resolution studies YES Does the introduction of TNM values (and not only of cond. TNM) produce standardization problems? YES sample periodically Do we consider all incidence cases or sample? If sample, periodically or routinary? What about insitu? We need data => suggestion to CR to collect data Which are the detection tests of metastasis? => For treatment domain STAGE AT DIAGNOSIS Method Form

94. Cancer type: All sites combined Relevance: end results Generic definition: years lost due to cancer using general life expectancy as reference Rationale: synthesize in a single measure the effects of cancer in a given population compared with competitive diseases Utility: Particularly useful for countries which do not have cancer registration. Single measure able to express the impact of cancer in premature mortality Caveat: no problems Modalities of classification: no By sex: yes By age: no Methodological problems -> MG PERSON-YEARS LIFE LOST DUE TO CANCER

95. Cancer type: same of the “cr coverage” indicator Relevance: same of the “cr coverage” indicator Generic definition: Completeness measure proposed by the ENCR Working Group Rationale: indication of the quality of registration Utility: to assess the precision of the national rate estimates Caveat: confidentiality, different ways of processing Death certificates in cancer registries Modalities of classif.: no By sex: no By age: no EC Suggestions: recommend the EC to verify or update existing recommendations on confidentiality in order to allow an access to Death Certificates COMPLETENESS OF THE REGISTRATION