Monitoring Cancer in Switzerland and Europe

Transcription

1 ANNEX 12 Institute for Social and Preventive Medicine the University of Basel Extract of Monitoring Cancer in Switzerland and Europe A Technical Description of the EUROCHIP Project and A Representation of Indicator Values; using the Example of Intestinal Cancer Prevention Ivan Curjuric, Carlos Quinto, Julia Dratva, Ursula Ackermann- Liebrich Basel 2004

2 Extract of the report: Monitoring Cancer in Switzerland and Europe; for the Symposium Monitoring Cancer in Switzerland, March 2005 Table of contents 1. Preface Cancer - a public health problem Monitoring Cancer Monitoring Cancer in Europe Monitoring Cancer) in Switzerland Objective Questions The EUROCHIP Indicator List Summary and Recommendations... 6

3 1. Preface 1.1 Cancer - a public health problem Today cancer, next to vascular diseases, is the most prevalent health problem in prosperous countries of the western world. Cancer ranks as the second most frequent cause of death in Europe; following circulatory system illnesses (i). According to recent estimates, approximately 339 new cases of cancer per 100,000 inhabitants annually will occur, over the coming years (based on standardized European age distribution) (ii). However, cancer does not only concern those afflicted, but concerns the system as a whole; thus, representing a heavy burden on existing resources. Cancer treatment frequently requires interdisciplinary cooperation among experts from various fields as well as specific, and often costly, treatment. Even after their primary medical care and intervention, many patients still need out patient care and far more regular check ups for many years to come. This makes cancer treatment into a lengthy and complex task, while exerting a huge demand on available resources. In the long term and with regard to the evolutionary trend of a greater percentage of the population being of advanced age (iii), additional problems are foreseen. Thus, it is even more important to use all available resources optimally, in order to fight cancer. In 1995, the WHO was keenly aware of cancer s growing political health relevance and published their document on National Cancer Control Programmes. (iv) The WHO called upon countries to form national cancer control programmes. The defined global goals of the programmes are aimed at reducing the number of cancer incidences and cancer mortality, as well as improving the quality of life of all those who are afflicted by this illness. Programmes should include the sectors of priority health support, prevention, early detection, diagnostics, therapy, psychosocial support and rehabilitation (ref. to palliative care). Even countries with low economic means should be able to achieve significant progress through an appropriate and assessed use of resources in a nationally organized programme in controlling cancer. Through such a national programme, resource distribution would be fundamentally supported through a well working cancer monitoring system. So far, the establishment of national programmes in individual countries has taken place in a variety of ways (v). 1.2 Monitoring Cancer Monitoring cancer should be an integral component of every national cancer control programme. Timely data processing and assembling of data go hand in hand in order to build a solid basis for the programme. Consequently, monitoring cancer plays a crucial role as a control tool in steering all national cancer programmes. The WHO also stresses the importance of monitoring systems in the fight against cancer (v). Monitoring cancer should take into account the entire population of a particular territory. Population-referential monitoring provides information on the current number of cancer cases nationwide and gives estimations on possible future developments of the disease. Such monitoring presents the conditions through which to explore the possible causes and development of cancer, prevention measures to be taken, and describes important characteristics of the individual cancer types; such as the frequency distribution of its appearance, the risk factor frequency distribution, the degree of cancer development at the time of diagnosis, the administered therapy, etc. The WHO proposes to gradually and systematically structure such monitoring on a step-bystep basis (v). Firstly, indications are recorded on the database from completed 1

4 questionnaires. Secondly, indications are physically measured. Then thirdly, biochemical measurements are taken by an intervening party (WHO stepwise approach to surveillance (STEPS). Over time and on the basis of these data trends, monitoring will enable an estimation of the efficacy of measures taken; being measures targeted at cancer in general, or specific types of cancer. Such an evaluation of results proves to be indispensable, especially since resources are always limited Monitoring Cancer in Europe In the European Union, within the framework of the European Health Monitoring Programmes (HMP), remarkable efforts have been put into developing a European cancer monitoring system. The European Cancer Health Indicator Project (EUROCHIP) held a fundamental position in this process (vi). This project was started in January It had as its goal to establish an extensive list of indicators; which would be necessary for future cancer monitoring. By defining these indicators and publishing the survey guidelines concerning data collection, an important basis was laid in order to determine the future standardized statistics on cancer related health data; that could be compared on a European level. This included information on the data availability as well as the definition of the current actual situation. The defining indicators were divided into 5 main areas (prevention, epidemiology and registration of cancer cases, tracking, treatment and clinical aspects, social and macroeconomic variables). In the EUROCHIP project, each indicator s relevance, from the initial list of 158, has been examined by an international committee of experts (members of European institutions dedicated to the fight against cancer and those who are responsible for European cancer research projects), national specialist groups and international expert groups from the different areas concerned. In total, more than 130 people took part in the project. Following in-depth discussion at national and international meetings, a list of 52 indicators was agreed upon. Of these 52, 26 indicators were given high priority. A separate group dealt with methodical aspects such as data standardization, collection and validation. The project ended in June Its final report (vii) presents the retained indicators, the various aspects and methodological problems, as well as the data availability. A representative list of the current indicators can be found in chapter 1.5. For certain indicators that are not cancer-specific and were therefore examined in autonomous projects in the framework of the HMP (such as alcohol consumption in the ECAS Project), the results of their corresponding projects can be found quoted in the report. Important cancer-epidemiological data has been provided through the EUROCARE Study (viii) and EUROPREVAL Study (ix). The EUROCARE Study began in 1989 and remains, until now, the largest survey undertaken which concerns the survival of cancer patients in European countries. In its most recent version EUROCARE-3 (x), 1.8 million adults and 24,000 children in 20 countries who were diagnosed with cancer from 1990 to 1994 were surveyed. The follow-up part of the survey lasted until year survival rates of 48 cancer types appearing in adults and 24 cancer types appearing in children are available. The numbers for the adults are based on statements of a total of 56 cancer registries, among these the cancer registries of Basel/Baselland and Geneva. The EUROPREVAL Study collected data from almost 3 million cancer patients, from 38 cancer registries within 17 countries (Switzerland has been again represented by the cancer registries of Geneva and Basel/Baselland) and estimated the prevalence of different cancer illnesses as of December 31, 1992 (point estimate). Estimations are based on the follow-up data from patients between 1970 and The estimated prevalence was subdivided into the number of patients, their varied recourse to public health care, and according to the duration of the illness. The divisions were: prevalence of cancer illnesses within the last 2, 5, 10, or 15 2

5 years that were diagnosed (so-called partial prevalence ). The following cancer types were examined: stomach cancer, colon and rectum cancer (not analyzed individually), lung cancer, breast cancer, cervical and uterine cancer, prostate cancer, melanoma, Hodgkin s disease and leukemia. An overall prevalence was estimated for all cancer types, as well. The Comprehensive Cancer Monitoring Programme (CAMON") (xi) has the objective of building a database concerning cancer incidence, mortality, cancer prevalence and cancer survival rate within 38 European countries. The project is supported by the EU Health Monitoring Programme and is run under the leadership of the International Agency for Research on Cancer (IARC) in Lyon, France. Presently, there is a database for incidence and mortality covering 25 types of cancer from 36 countries (xii). Data from the EU member states are collected separately in the EUCAN data bank (xiii). This data not only contains information on cancer incidence and mortality, but also on the survival rate and the prevalence for 23 types of cancer (xiv). Cancer incidence and mortality data are gathered from cancer registry statistics (xv), and survival rate statistics are derived from the EUROCARE survey. The recording methods developed by P. Pisani, F. Bray and D. M. Parkin (xvi) are used to calculate 1-, 3- and 5-year prevalence rates, so called partial prevalence. These indicate, at a given moment, the number of patients who have had cancer diagnosed within a certain time frame (1, 3 or 5 years) prior to the summary date, resulting in a difference in the use of public health system resources In spite of the above mentioned projects, it is to be noted that concerning the situation in Europe, a fully comprehensive cancer monitoring system is not yet possible with regard to the EUROCHIP project list, as it stands now. Corresponding information in various fields on the European level are still missing; for example, data on the nutrition aspects of prevention. Also in other areas, the database would have to be broadened; for example, to increase in the population covered by the cancer registries in the sectors of epidemiology/cancer registration. With some other indicators, ongoing methodical work should still be achieved: such as in area screening. A part of this work will be accomplished within the framework of the EUROPCHIP projects. The start up of EUROCHIP 2 is foreseen to begin in May Monitoring Cancer) in Switzerland In Switzerland, consideration is being given to developing a fully comprehensive cancermonitoring programme within the framework of its national cancer control programme. Independent of this work, a general health monitoring (surveillance) system has been initiated by the Swiss Federal Government, through its creation of the Swiss Health Observatory. The Observatory is to act as a platform for all data concerning health. The Observatory currently manages a database of 160 indicators that are subdivided into 7 different modules (demographic and socio-economic characteristics, state of health, determinants of health, environment, health system resources and their use, benefits and use of health service facilities, and health costs). It also publishes a national report on health every five years (xvii) and in the future, foresees to create a topic module on cancer illnesses. The Swiss cancer cases registries furnished the data on incidence and mortality within the fields of cancer registration and epidemiology, until now. Data on survival rate and prevalence is available through the framework of EUROCARE and EUROPREVAL. However, this Swiss data is only taken from the Geneva and Basel registries. The 9 existing cancer registries cover 56% of the population. Data concerning prevention, that means data indicating prevention frequency factors or cancer related risks, are regular subjects of surveys (polls) aimed at the Swiss population: - The Swiss Health Survey conducted by the Swiss Federal Office of Statistics - The Swiss Students Survey conducted by the Swiss Prevention of Alcoholism and Other Addictions Institute (ISPA). 3

6 However, population based data on screening and treatment are still missing to a large extent from the above-mentioned sources. The present efforts aim to enlarge the existing data base and to establish a regular and comprehensive standardized investigation in order to collect key relevant and precise cancer data. To assure the comparability of data, it would be best to once again make use of the EUROCHIP indicators. 1.3 Objective In order to contribute to the definition of a set of suitable indicators for Switzerland, the present project work has been based on the EUROCHIP model. First, a technical description of the EUROCHIP list is presented, with reference to the indicator definitions and the available data sources in Switzerland and Europe. In the given example, determined indicators that have proven to be applicable for the prevention of intestinal cancer are listed. Then, there is a data source description as well as current indicator values, which are representative (intestinal cancer that is designated here also includes colon and rectum carcinoma). By presenting the information in this manner, it is easy to see the existing gaps in data, as well as to compare the situation between Switzerland and Europe. This work has been undertaken by the Basel Institute of Social and Preventive Medicine following its commission by the Swiss Cancer League. 1.4 Questions 1. Which indicators are proposed by the EUROCHIP project to assure cancer monitoring and what is their definition? 2. Which sources are available for the definition of the indicators in Switzerland and in Europe? 3. What are the applicable indicators for intestinal cancer prevention? Which data sources are available and what are the current values of these indicators? 4. Where do data gaps still appear? 4

7 1.5 The EUROCHIP Indicator List Table 1: The following indicators were proposed for cancer monitoring: List is subdivided into main data areas (Source: 1 Pr a Prevention Lifestyle 01. Consumption of fruit and vegetables* 02. Consumption of alcohol* 03. Body Mass Index distribution in the population* 04. Physical activity* 05. Tobacco survey*: prevalence of a) tobacco smokers among adults b) tobacco smokers among year olds c) ex-smokers Environment & Occupational Risk d) exposure to environmental tobacco smoke (ETS) 06. Exposure to sun radiation 07. PM10 (particulate matter= 10um 3 ) emissions* 08. Indoor exposure to radon 09. Prevalence of occupational exposure to carcinogens 10. Exposure to asbestos: mesothelioma incidence and mortality trends Medicaments 11. Prevalence of use of hormonal replacement drugs* 2 Ep a Epidemiology & Cancer registration 1. Population covered by high quality Cancer Registries 2. Cancer incidence rates, trends and projections* 3. Cancer relative survival rates, trends and projections* 4. Cancer prevalence proportions, trends and projections* 5. Cancer mortality rates, trends, projections and person-years of life lost due to cancer* 6. Stage at diagnosis: percentage of a) cases with early diagnosis b) cases with a metastatic test 3 Sc a Screening Screening Examinations: 1. Percentage of women that have undergone a mammography (breast cancer) 2. Percentage of women that have undergone a cervical cytology examination (cervical cancer) 3. Percentage of persons that have undergone a colorectal cancer screening test National evaluation in HMP of organized mass screening process indicators 4a. Organized screening coverage 4b. Screening recall rate 4c. Screening detection rate 4d. Screening localized cancers 4e. Screening positive predictive value 4f. Screening benign/malignant biopsy ratio 4g. Screening interval cancers 4h. Screening specificity Notes: a Domain code * Examined within other projects of the EU Health Monitoring Programmes (HMP) Bold: High priority indicators Every designated indicator is represented by an international code by way of a Domain Code Indicator Number 4 Tr a Treatment & Clinical Aspects Health system delay 1. Delay of cancer treatment (pilot studies) Resources 2. Percentage of radiation systems in the population 3. Percentage of diagnostic Computed Axial Tomographies (CTs) in the population 4. Percentage of Positron Emission Tomographies (PETs) on population (for future) 5. Percentage of magnetic resonances on population (for future) Treatment 6. Compliance with best oncology practice Palliative care 7. Use of morphine in cancer patients 8. Percentage of patients receiving palliative radiotherapy 5 Mv a Macro-social and Economic Variables Social indicators 01. Educational level attained* 02. Income by decile* 03. Gini s index* Macro economic indicators 04. Gross domestic product* 05. Total social expenditure* 06. Total national expenditure on Health 07. Total public expenditure on Health 08. Anti-tobacco regulations 09a.Public expenditure for cancer prevention on anti-tobacco activity 09b.Total expenditure for populationbased cancer registries 09c.Total expenditure on organized cancer screening programmes 09d.Public expenditure on cancer drugs* 09e.Public expenditure on cancer research 09f.Estimated cost for a cancer patient Demographic indicators 10. Age distribution in 2010, 2020 and 2030* 11. Life-table quantities* 5

8 2 Summary and Recommendations Cancer monitoring is a key element of every national cancer programme in the fight against cancer. The regular collection and appropriation of data constitute the assessment basis for evaluation and play a crucial role in piloting a programme. In the European Union, within the framework of the EU Health Monitoring Programmes (HMP), a comprehensive list of indicators was established that assures efficient cancer monitoring. The present paper is based upon this European indicator list (EUROCHIP), which proves valuable in examining the data status in Switzerland. It s important to emphasize that the definition of a set of indicators for Switzerland is a vital step for the future uniform collection of relevant cancer data, efficient cancer monitoring and data comparability at the European level. A first step in this work consists of assessing the value of the current data related to cancer and the corresponding risk factors in Switzerland: I. In the areas of promotion of health and prevention, reliable data is available. It is not necessary to organize the collection of new data. Required Actions: A. Ensure the continuation of existing surveys (polls) such as the Swiss Health Survey, conducted by the Swiss Federal Office of Statistics (BFS) and the Swiss Students Survey, conducted by the Swiss Prevention of Alcoholism and Other Addictions Institute (ISPA). B. Adapt these existing surveys (polls) to include the corresponding indicators of cancer monitoring; for example, area screening. C. Make available the necessary resources in order to process and publish this data so that it can be used for the national cancer control programme. Since this is an iterative process, it would be preferred to institutionalize it. Potential institutions to be considered are the Association of Swiss Cancer Registries (VSKR), a future National Institute for Cancer Epidemiology or the Swiss Health Observatory (Obsan). II. III. In the area of early detection (screening), the only available data comes from the Swiss cantonal screening programmes through mammography. With regard to other screening possibilities, no other information can be provided yet. Required Actions: A. Each screening programme is to be evaluated. Within the framework of the EUROCHIP project, a set of indicators should be elaborated upon and used for this purpose. B. Prepare a survey; analogous to the one done for EUROCARE, for data on every type of cancer, for which a systematic screening is implemented. Provide the corresponding financial and staff resources on a long-term basis in order to complete the survey; so that the cancer registries, or a still to be created national institute for cancer epidemiology, can follow through on this task. Until now, there has been no real epidemiological data published to evaluate cancer treatment, except for the EUROCARE data from the cantons of Geneva and both Basel cantons. 6

9 Required Actions: A. Guarantee for the long-term cancer registries, staff and necessary financial means to sustain all efforts in order to create a database in Switzerland that is analogous to EURO-CARE. This is the most favorable and least expensive way to evaluate treatment efficiency. Furthermore, the resulting data would allow for a procedure of comparison between Switzerland and its neighboring countries. Such an indispensable comparison would assure the monitoring and the evaluation for the national programme against cancer. B. Conduct a study to verify whether data from the hospital establishment statistics (Hospital Statistics of the BFS/OFS) or those derived from the health insurance companies (santésuisse) can be used for cancer monitoring within the national cancer control programme. IV. In the epidemiology field, the cancer registries cover 55% of the population. However, the urban regions are over-represented in this proportion. The quantity and the quality of the data also vary from one registry to another. These differences are due to the disparities between the cantonal legislations and the cantonal resources. Such differences lead to a reduction in work efficiency. A national center for cancer epidemiology (national cancer registry) is still lacking. Required Actions: A. To undertake the necessary adaptations at the level of the cantonal legislations, or even up to the federal legislation level, in order to permit the cancer registries to provide efficient work, more reliable data as well as reduce costs; thus saving money. B. Foresee and provide for the necessary long term financial requirements in order to adapt the database and to standardize the data quality of all cancer registries. C. A national cancer programme requires continuous cancer monitoring. Ways to strengthen the existing organization (VSKR) are planned. It is also intended to build a national institute for cancer epidemiology. D. The above-mentioned data should be published in a national report that appears timely and regularly. It should contain a cancer epidemiological description of cancer, their development and the relevant risk factors. V. Switzerland has political and scientific contacts with the WHO and the CIRC, as well as with the EUROCHIP projects and EURO-CARE. It would be wise and useful for Switzerland to participate in European programmes, or even worldwide programmes, in order to benefit from knowledge transfers and resource pools. This also makes good economic sense. Required Action: A. Specific incentives for participation in international programmes should be planned. 7

10 Bibliography i Der Europäische Gesundheitsbericht Regionale Veröffentlichungen der WHO. Europäische Schriftenreihe Nr. 97. WHO-Regionalbüro für Europa. Kopenhagen 2002 ii Ferlay J, Bray F, Sankila R et al. EUCAN: Cancer incidence, mortality and prevalence in the European Union version 5.0. IARC Cancer Base No. 4. Lyon, IARC Press, 1999 iii Bevölkerungsszenarien EUROSTAT oder BFS iv National Cancer Control Programmes: Policies and managerial guidelines. World Health Organisation. Geneva 1995 v National Cancer Control Programmes: Policies and managerial guidelines. 2 nd ed. World Health Organization. Geneva 2002 vi vii Micheli A et al., EUROCHIP. European Cancer Health Indicator Project. Final Report 15/07/03. European Commission, Directorate for Public Health and Safety at Work viii Berrino F, Capocaccia R, Estève J et al. (eds): Survival of Cancer Patients in Europe. The EUROCARE-2 Study. IARC Scientific Publications No Lyon, France: International Agency for Research on Cancer, 1999 ix Micheli A, Mugno E, Krogh V et al. Cancer Prevalence in European registry areas. Annals of Oncology 2002; 13: x Coleman MP, Gatta G, Verdecchia A et al. EUROCARE-3 summary: cancer survival in Europe at the end of the 20th century. Annals of Oncology 2003; 14 (Supplement 5): xi xii Bray F, Sankila R, Ferlay J et al. Estimates of cancer incidence and mortality in Europe European Journal of Cancer 2002; 38: xiii xiv Bray F et al. The Comprehensive Cancer Monitoring Programme in Europe. European Journal of Public Health 2003; 13 (3 Supplement): xv European Network of Cancer Registries. EUROCIM version 5.0, Lyon 2003 xvi Pisani P, Bray F, Parkin DM. Estimates of the worldwide prevalence of cancer for 25 sites in the adult population. International Journal of Cancer 2002; 97: xvii WHO. Panorama Gesundheit Die Schweiz im europäischen Vergleich. Edition obsan, Neuchâtel,

11 This report was produced by a contractor for Health & Consumer Protection Directorate General and represents the views of the contractor or author. These views have not been adopted or in any way approved by the Commission and do not necessarily represent the view of the Commission or the Directorate General for Health and Consumer Protection. The European Commission does not guarantee the accuracy of the data included in this study, nor does it accept responsibility for any use made thereof.