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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 EUROCHIP GROUP OF SPECIALISTS on SCREENING Edinburgh, 20th November 2002 Chairperson: Dr Elena Riza INTRODUCTION TO THE MEETING Dr. Elena Riza 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 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 “ 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 EUROCHIP PROJECT: PRESENTATION Dr. Andrea Micheli 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 EUROCHIP Comprehensive range of health indicators for cancer: EUROCARE/EUROPREVAL CAMON OCCURENCE SURVIVAL RISK FACTORS LIST OF CANCER CARE/ PREVALENCE CANCER RECURRENCE AND MORTALITY CANCER INDICATORS PRE-CLINICAL ACTIVITY/ SCREENING DIAGNOSTIC AND THERAPEUTIC PROCEDURES CLINICAL FOLLOW-UP Standardised methods for collecting, checking and validating the data will be proposed for each indicator Www.istitutotumori.mi.it/project/eurochip/homepage.htm FRAMEWORK OF THE PROJECT Steering Committee GS: Groups of specialists Discussion of indicators at national and domain level Working Team Operational work Panel of Experts GS Discussion & organization at national level GS GS GS GS Methodological Group GS Methodological aspects of the indicators GS Www.istitutotumori.mi.it/project/eurochip/homepage.htm FIRST AND FUTURE STEPS 130 CANCER SPECIALISTS ARE INVOLVED IN EUROCHIP 13 INTERNATIONAL MEETINGS HELD ALL COUNTRIES OF THE EUROPEAN UNION ARE PARTICIPATING IN THE PROJECT 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 Www.istitutotumori.mi.it/project/eurochip/homepage.htm RESULTS For each indicator we compile a FORM subdivided in three sections: DESIRED INDICATOR: all indicator characteristics we wish to have METHODOLOGY: operational definition, possible sources and methodological issues AVAILABILITY in different countries LIST OF INDICATORS PRELIMINARY LIST OF 158 INDICATORS EUROCHIP MEETINGS 39 INDICATORS AT HIGH PRIORITY Www.istitutotumori.mi.it/project/eurochip/homepage.htm EUROCHIP FINAL RESULTS (AT THE END OF STEP 3) For each indicator at high priority EUROCHIP will produce: 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 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 DESCRIPTION THOROUGHNESS OF THE INDICATOR LIST Dr. Franco Berrino LIST OF EUROCHIP HIGH PRIORITY INDICATORS PREVENTION 1.Tobacco consumption 2.Exposure to asbestos SCREENING 5.Breast cancer screening coverage 6.Cervical cancer screening coverage 7.Performance indicators of organized screening programmes MACRO SOCIALECONOMIC VARIABLES 16.Total National Expenditure on Health for cancer 17.Total Public Expenditure on Health for cancer EPIDEMIOLOGY AND CANCER REGISTRATION 3.Coverage of cancer registration 4.Stage at diagnosis TREATMENT AND CLINICAL ASPECTS 8.Interval between first symptoms and diagnosis 9.Interval between diagnosis and first treatment 10.Radiation equipment 11.% of centres with at least 2 radiation equipments 12.Doctors by specialization 13.Compliance with guidelines 14.Pain units and hospices 15.Use of morphine INDICATORS AT HIGH PRIORITY (1) PREVENTION 1) Tobacco consumption 2) Consumption of fruit and vegetable * 3) Consumption of alcohol * 4) Body Mass Index * 5) Exposure to asbestos 6) AIDS incidence * 7) Prevalence of hepatitis B/C * EPIDEMIOLOGY AND CANCER REGISTRATION 8) Coverage of cancer registration 9) Incidence rates * 10) Survival rates * 11) Prevalence proportion * 12) Mortality rates * 13) Stage at diagnosis * Connected with other HMP projects 14) DCO * 15) Incidence / mortality * 16) % of istological cases * Www.istitutotumori.mi.it/project/eurochip/homepage.htm INDICATORS AT HIGH PRIORITY (2) SCREENING 17) 18) 19) Breast cancer screening coverage Cervical cancer screening coverage Performance indicators of organized screening programmes TREATMENT AND CLINICAL ASPECTS 20) 21) 22) 23) 24) 25) 26) 27) 28) Interval between first symptoms and diagnosis Interval between diagnosis and first treatment Radiation equipment % of centres with at least 2 radiation equipments Doctors by specialization Compliance with guidelines Patients treated by surgery * Pain units and hospices Use of morphine * Connected with other HMP projects Www.istitutotumori.mi.it/project/eurochip/homepage.htm INDICATORS AT HIGH PRIORITY (3) MACRO SOCIAL-ECONOMIC VARIABLES 29) 30) 31) 32) 33) 34) 35) 36) 37) 38) 39) Education level attained * Deprivation index * Income * Gross Domestic Product * Total Social Expenditure Total National Expenditure on Health * Total National Expenditure on Health for cancer Total Public Expenditure on Health * Total Public Expenditure on Health for cancer % elderly in 2010-2020-2030 Age distribution of population * Connected with other HMP projects Www.istitutotumori.mi.it/project/eurochip/homepage.htm PRIORITY LEVELS A Direct indicator – Important – With or without any problem B Indirect indicator – Important – With or without any problem C Potentially useful but with presenting a great deal of problems D Very low priority – Irrelevant DO YOU WANT SOMETHING ELSE AT HIGH PRIORITY? 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 ARE THESE PRIORITIES OK? A - Breast cancer screening coverage - Cervical cancer screening coverage - Performance indicators of organized screening programmes ? - Incidence of DCIS and LCIS (breast cancer) - Incidence of insitu carcinoma of cervix - Incidence of adenocarcinoma in polyp - Incidence of A stage for prostate C - Occult blood - PSA - Colonoscopy BREAST CANCER SCREENING COVERAGE Dr. Nieves Ascunce Elizaga BREAST CANCER SCREENING COVERAGE CONTEXT SOURCE Diffusion of the mammography among females between 40 and 70 years old National organized screening programmes. Survey for other countries STANDARDIZATION No problems VARIABILITY No problems VALIDITY No problems DESCRIPTIVE FORM METHODOLOGICAL FORM 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? CERVICAL CANCER SCREENING COVERAGE Dr. Elena Riza CERVICAL CANCER SCREENING COVERAGE CONTEXT Diffusion of the pap smear examination among females between 25 and 64 years old SOURCE National organized screening programmes. Survey for other countries STANDARDIZATION No problems VARIABILITY No problems VALIDITY No problems DESCRIPTIVE FORM METHODOLOGICAL FORM 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? PERFORMANCE INDICATORS OF ORGANIZED SCREENING PROGRAMMES Dr. Elena Riza INDICATORS 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 SCREENING VOLUME CONTEXT Coverage of organized screening programmes SOURCE Organized screening programmes. STANDARDIZATION VARIABILITY VALIDITY DESCRIPTIVE FORM No problems Relevant in countries without national coverage No problems METHODOLOGICAL FORM 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). 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 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 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) 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 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 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 EUROPEAN COMMISSION PUBLIC HEALTH PROGRAMS Dr. Andrea Micheli PUBLIC HEALTH IN EUROPE • the European past and next strategy FOCUS ON CANCER • past/present in HMP: EUROCHIP and CAMON • next: Working Party Priority areas of the public health programme General health policy Health information Health determinants Health threats By Dr. Tapani Piha Bringing programmes together -2002 Health monitoring Injury Health Cancer Pollution Aids information Rare diseases 2003By Dr. Tapani Piha Bringing programmes together -2002 Health monitoring Injury Health Cancer Pollution Aids information Rare diseases 2003By Dr. Tapani Piha 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 Stages in data processing 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 Stage 2 Support to data collection at national level Stage 1 Data definition and quality development By Dr. Tapani Piha