How to find datasets from your own country Introduction to WHO HFA, EUROCISS, MONICA and AMI/ACS registers

Introduction Reliable indicators for monitoring CVD and for which data are available on a comparable basis across EU countries are currently limited Even mortality is scarcely comparable since the diagnostic criteria for coding death certificates are not standardized at international level and diagnostic information is not based on uniform criteria

Common data sources in Europe WHO-mortality (Health For All, HFA) WHO-MONICA EUROCISS inventory of population-based registers Except for the MONICA, data presented are extremely variable

WHO-Time trends in IHD mortality in 1970–2000 men and women aged 45–74 years WE, Western Europe : Austria, Belgium, Denmark, England and Wales, Finland, France, Germany, Greece, Ireland, Italy, The Netherlands, Norway, Portugal, Scotland, Spain, Switzerland, Sweden ELL. Estonia, Lithuania, Latvia Kesteloot, Sans, Kromhout. European Heart Journal (2006) 27, 107–113

WHO-Time trends in stroke mortality in 1970–2000 men and women aged 45–74 years WE, Western Europe : Austria, Belgium, Denmark, England and Wales, Finland, France, Germany, Greece, Ireland, Italy, The Netherlands, Norway, Portugal, Scotland, Spain, Switzerland, Sweden ELL. Estonia, Lithuania, Latvia Kesteloot, Sans, Kromhout. European Heart Journal (2006) 27, 107–113

Mortality data available WHO HFA, EUROSTAT Age: 0-64, 65+, 25-64, 0-14, 15-29, 30-44, 45-59, 60-74, 75+; from WHO-HFA 0-84 by 5-year age groups, 85+, 0-64 from EUROSTAT for IHD and STROKE

Participating countries AUSTRIA   M. Kornitzer DENMARK M. Madsen FINLAND V. Salomaa france S. Paterniti GERMANY A. Doring ITALY S. Giampaoli, L. Palmieri, S. Panico, F. Seccareccia, D. Vanuzzo ICELAND V. Gudnason GREECE A. Trichopoulou M. Verschuren NORWAY POLAND A. Pajak PORTUGAL E. Rocha SPAIN S. Sans SWEDEN N. Hammar UK P. Primatesta EUROPEAN HEART NETWORK K. Steinbach BELGIUM M Participating countries   AUSTRIA K. Steinbach – Austrian Hearth Foundation, Wien BELGIUM M. Kornitzer – School of Public Health, Bruxelles CZECH REPUBLIC J. Holub – Institute of Health Information and Statistics, Praha DENMARK M. Madsen – National Institute of Public Health, Copenhagen FINLAND V. Salomaa – National Public Health Institute, Helsinki FRANCE J. Bloch, C. Peretti – Institut de Veille Sanitarie, Saint Maurice GERMANY A. Doering – Insitute für Epidemiologie GSF, Neuherberg HUNGARY R. Adany – School of Public Health, Debrecen ITALY (COORDINATOR) S. Giampaoli, L. Palmieri, P. Ciccarelli, S. Panico, D. Vanuzzo, Rome ICELAND V. Gudnason – Iceland Heart Association, Kopavogur GREECE A. Trichopoulou – School of Medicine, Athens The NETHERLANDS M. Verschuren – National Institute of Public Health and E. Bilthoven NORWAY S. Graff-Iversen – Norvegian Insitute of Public Health, Oslo POLAND A. Pajak – Institut of Public Health, Krakow PORTUGAL E. Rocha – Insituto de medicina Preventiva, Lisbon SPAIN S. Sans – Institut d'Estudis de la Salut, Barcelona SWEDEN N. Hammar – Karolinska Institute, Stockholm UK P. Primatesta – Univ. College London Medical School, London EUROPEAN HEART NETWORK S. Allender – University of Oxford, Oxford the NETHERLANDS S. Graff-Iversen   P. Primatesta      

The map….

To prioritise cardiovascular disease of major interest in EU countries Main objectives To prioritise cardiovascular disease of major interest in EU countries To provide a list of specific indicators and sources of information for monitoring CVD To prepare the Manual of Operations for the implementation of population-based registers of acute myocardial infarction/acute coronary syndrome, stroke and of CVD surveys

EUROCISS Recommendations for mortality indicators AMI: ICD10 codes I20-I21 (ICD9: 410) IHD: ICD10 codes I20-I25 (ICD9: 410-414) CVA : ICD10 codes I60-I69 (ICD9: 430-438) Ischaemic STROKE : ICD10 code I64 (ICD9: 434) Haemorragic STROKE : (Intracerebral) ICD10 codes I61, I62 (ICD9: 431, 432) (Subarachnoid) ICD10 code I60 (ICD9: 430) Age: 35-44, 45-54, 55-64, 65-74 and 75-84 Indicators should be standardised by age and gender using the European standard population

Trend in coronary events

Trend in case fatality

MONICA Project Limits: Coverage (only some areas of country) Age range (35-64) Cost 10 years out of date Advantages: Comparable and reliable data Hot-cold pursuit to identify suspected events in all countries All events validated during registration period

Tools for monitoring AMI/ACS Type of registers/health surveys Data sources Data collection Indicators Registers based on routine administrative data Mortality registers Hospital registers Drug-dispensing registers Hospital discharge and mortality data unlinked with or without validation Mortality Hospitalisation Length of stay Extraction of hospital discharge and mortality data with record linkage and with or without validation of a sample Attack rate Case fatality rate Specific AMI/ACS registers HDR GP Records Other sources Collection of data including fatal and non fatal cases in and outside hospital by hot/cold pursuit Incidence rate Prevalence Treatment Years of life lived with disability (YLDS) Estimate of long-term care needs Surveys Health interview and/or health examination Questionnaire and medical examination of random population samples Risk factors

Registers based on administrative data-bases Identification of events: record linkage between mortality and hospital discharge records Coverage: the whole country area, all age groups Data collection: large number of events Resource consuming: economical Objectives: to plan health services and health care expenditure; to provide internationally comparable data on mortality, causes of death and hospital admissions Indicators: attack rate, (incidence), treatment

NATIONAL AMI/ACS Population-based Registers in Europe: From Administrative Databases Country Age range Population (x 1000) ICD version Mortality ICD codes(*) HDR Validation Denmark all 5,411 VIII,X 410-414, 798, 799 410 MONICA Finland 5,200 X 410-414, 428,798, 799 410-414, 428 MONICA, ESC/ACC Iceland 25-74 170 IX, X 410-414, 428, 798, 799 410-412, 414 ECG, enzymes, symptoms, MONICA, autopsy Sweden 9,011 (*) all codes are presented in the ICD-9 revision to facilitate the comparison

Registers based on specific data collection Identification of events: hot/cold pursuit; validation of each event applying standardized diagnostic criteria Coverage: may not be representative of the whole country; covering selected age-ranges, implemented for a limited period of time, in a defined population of reasonable size Resource consuming: expensive Indicators: attack rate, incidence, prevalence, case fatality, treatment, years of life lived with disability (YLDS), estimate of long-term care needs

Population-based specific AMI Registers: based on specific data collection Country Years Age range Population x 1000 Accessibility Belgium Charleroi Ghent 1983-2003 25-69 25-74 (Ghent) 100 142 (Ghent) School of Public Health/University of Ghent Belgium Bruges 1999-2003 25-74 151 Univ. of Ghent Northern Denmark 1978-2001 All 494 Aarhus Univ. Finland 1993-2002 35+ 193 KTL France 1985-2004 35-74 1,519 INSERM U780 Germany 1985-2002 407 GSF – KORA Italy 1998-99 3,600 Institute of Health Norway 1972-2002 1,000 Health Region West Spain 1985-1998 480 Institute of Health Studies Northern Sweden 1987-2001 322 MONICA

AMI/ACS Population–based Registers in Europe: (continued) case definition Country ICD version Mortality ICD codes(*) HDR Linkage Mortality / HDR Validation Belgium IX, X 410-414, 428, 799 410-414, 428 PTCA, CABG Name, date of birth ECG, enzymes, symptoms, MONICA Northern Denmark X 410 ID No validation Finland 410, 411, 428,798 410, 411 MONICA, ESC/ACC France 410-414, 798, 799 MONICA Germany 410-414, 428,799 Italy IX 410-414, 798,799 410-414 Norway Troponine, CKMB levels Spain 410-414, 428, 798, 799, others Northern Sweden – MONICA (*) all codes are presented in the ICD-9 revision to facilitate the comparison

AMI/ACS Population-based Registers Objectives monitoring disease occurrence (attack and incidence rates) understanding differences between genders, age groups, social classes, ethnic groups, etc. identifying vulnerable groups monitoring in- and out-of-hospital case fatality monitoring the consequences of disease in terms of treatment and rehabilitation tracing the utilization and impact of new diagnostic tools and treatments

AMI/ACS Population-based Registers Manuals of Operations Quality control Quality control is extremely important for a valid monitoring and comparison and depends: completeness of cases completeness of information

AMI/ACS Population-based Registers Manuals of Operations Internal validity Validation evaluates the sensitivity, specificity and predictive value of the registered diagnosis compared to a golden standard To validate coronary events, the New Criteria of the Joint ESC/ACC or the MONICA diagnostic criteria may be applied as golden standard

AMI/ACS Population-based Registers Manuals of Operations External validity All events occurring in the target population must be registered It is important to know how representative is the area for the whole country according to: IHD mortality rate distribution of risk factors (socioeconomic status and health behaviour) distribution of health service (specialized hospitals, GPs)

AMI/ACS Population-based Registers Validation provides the means to: Manuals of Operations Validation provides the means to: take into account bias from diagnostic practices and changes in coding systems trace the impact of new diagnostic tools and re-definition of events ensure data comparability within the register (i.e. different sub-populations, different time points, etc) ensure data comparability with other registers within and between countries

Participating countries AUSTRIA   M. Kornitzer DENMARK M. Madsen FINLAND V. Salomaa france S. Paterniti GERMANY A. Doring ITALY S. Giampaoli, L. Palmieri, S. Panico, F. Seccareccia, D. Vanuzzo ICELAND V. Gudnason GREECE A. Trichopoulou M. Verschuren NORWAY POLAND A. Pajak PORTUGAL E. Rocha SPAIN S. Sans SWEDEN N. Hammar UK P. Primatesta EUROPEAN HEART NETWORK K. Steinbach BELGIUM M Participating countries   AUSTRIA K. Steinbach – Austrian Hearth Foundation, Wien BELGIUM M. Kornitzer – School of Public Health, Bruxelles CZECH REPUBLIC J. Holub – Institute of Health Information and Statistics, Praha DENMARK M. Madsen – National Institute of Public Health, Copenhagen FINLAND V. Salomaa – National Public Health Institute, Helsinki FRANCE J. Bloch, C. Peretti – Institut de Veille Sanitarie, Saint Maurice GERMANY A. Doering – Insitute für Epidemiologie GSF, Neuherberg HUNGARY R. Adany – School of Public Health, Debrecen ITALY (COORDINATOR) S. Giampaoli, L. Palmieri, P. Ciccarelli, S. Panico, D. Vanuzzo, Rome ICELAND V. Gudnason – Iceland Heart Association, Kopavogur GREECE A. Trichopoulou – School of Medicine, Athens The NETHERLANDS M. Verschuren – National Institute of Public Health and E. Bilthoven NORWAY S. Graff-Iversen – Norvegian Insitute of Public Health, Oslo POLAND A. Pajak – Institut of Public Health, Krakow PORTUGAL E. Rocha – Insituto de medicina Preventiva, Lisbon SPAIN S. Sans – Institut d'Estudis de la Salut, Barcelona SWEDEN N. Hammar – Karolinska Institute, Stockholm UK P. Primatesta – Univ. College London Medical School, London EUROPEAN HEART NETWORK S. Allender – University of Oxford, Oxford the NETHERLANDS S. Graff-Iversen   P. Primatesta      

Conclusions CVD is responsible of a great number of hospitalisation and deaths A surveillance system based on the collection of comparable and valid data is essential for evaluating the burden of CVD, time trends and geographical distribution and for planning and implementing appropriate preventive actions. Population-based registers represent the best data source for surveillance of acute coronary events as they include morbidity and in- and out-of-hospital mortality Unfortunately, today they are still very rare in Europe and cover only a small portion of the European population, mainly in the Nordic countries Attack rate for acute events from population-based registers and prevalence of chronic conditions from CVD surveys are the indicators recommended in the ECHIM Project (European Community Health Indicators and Monitoring)

Useful websites for data sources Acknowledgements Prof Simona Giampaoli for the use of these slides – Presented at EUROPREVENT Madrid 2007. Useful websites for data sources EUROCISS project http://www.cuore.iss.it/eurociss/en/progetto/progetto.asp WHO Monica project http://www.ktl.fi/monica/ European Health for All (HFA) database http://www.euro.who.int/hfadb

Homework Find data sources for CHD mortality and morbidity for your own country for the next event in Liverpool.