Population-based Registers in Europe: results from the EUROCISS Project Agreement n° 2003118 Simona Giampaoli Istituto Superiore di Sanità, Rome, Italy

Population-based Registers in Europe: results from the EUROCISS

Project

Agreement n° 2003118

Simona Giampaoli

Istituto Superiore di Sanità, Rome, Italy

5° Meeting of the Task Force on Major and Chronic DiseasesLuxembourg, 19 June 2007

Cardiovascular Indicators Surveillance Set

Participating countriesAUSTRIA 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 – 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 Environment, 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, OxfordCardiovascular Indicators Surveillance Set

Main objectives

To prioritise cardiovascular disease of major interest in EU countries

To provide a list of recommended 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


Tools for monitoring cardiovascular disease

Type of registers/health

surveysData sources Data collection Indicators

Specificdisease registers

MortalityHDR

GP Records

fatal and non fatal events in and outside hospital by hot/cold pursuit

Attack rateIncidence rate

PrevalenceCase fatality rate

TreatmentYears of life lived with

disability (YLDS)Estimate of long-term

care needs

Registers based on routine

administrative data

Mortality registers

HDRDrug-dispensing

registers

HDR and mortality data unlinked with or without validation

MortalityHospitalisationLength of stay

HDR and mortality data linked with or without sample validation

Attack rate Case fatality rate

SurveysHealth interview and/or health examination

Questionnaire and medical examination of population samples

PrevalenceRisk factors


NATIONAL AMI/ACS and STROKE Population-based Registers:

population characteristics and case definition


Country Age rangePopulation (x 1000)

ICD versionMortality

ICD codes (*)HDR

ICD codes (*)

Mortality ICD codes

(+)

HDSICD codes

(+)

AMI/ACS STROKE

Denmark All 5,411 X410-414,

798410, 411,

PTCA, CABG430-438 430-438

Finland All 5,200 X410-414, 428,

798, 799410-414, 428, PTCA, CABG

430-438 430-438

Iceland 25-74 170 IX, X410-414, 428,

798, 799410-412, 414, PTCA, CABG

Sweden All 9,011 X 410 410430-434, 436-438 430-438

(*) all codes are presented in the ICD-9 revision to facilitate the comparison

The EUROCISS Working Group. European J of Public Health 2003; 13 (Suppl 3): 55-60.

CountryICD

versionMortality

ICD codes(*)HDR

ICD codes(*)Linkage

Mortality / HDRValidation

Belgium IX, X410-414, 428, 798,

799410-414, 428PTCA, CABG

Name, date of birthECG, enzymes, symptoms, MONICA

Northern Denmark X 410 410 PIN -

Finland X410, 411, 428, 798,

799410, 411

PTCA, CABGPIN -

France IX, X410-414, 428, 798,

799, others410-414, 428 Name, date of birth MONICA

Germany X 410-414, 798, 799410, 411

PTCA, CABGName, date of birth MONICA, ESC/ACC

Italy IX410-414, 798, 799,

others410-414 Name, date of birth MONICA

Norway X 410410

PTCA, CABGPIN -

Spain IX410-414, 428, 798,

799410-414 Name, date of birth MONICA

Northern Sweden – MONICA

X 410, 411 410, 411 PIN MONICA


REGIONAL AMI/ACS Population–based Registers: case definition

Cardiovascular Indicators Surveillance SetThe EUROCISS Working Group. European J of Public Health 2003; 13 (Suppl 3): 55-60.

Country ICD versionMortality ICD codes

HDRICD codes

LinkageMortality / HDR

Validation

Finland X 430-432, 435, 436 430-432, 435, 436 PIN MONICA

France X 430-438, 442.81 430-438, 442.81 Name, date of birth

WHO clinical criteria, CT-Scan or MRI

Germany X 430-438 430-438Name,

date of birth

CT-Scan, Health Insurance

Italy MONICA IX 430-434, 436-438 430-434, 436-438 Name, date of birth MONICA

Norway X 430-438 430-438 PIN MONICA

Sweden MONICA

X 430-438, 798, 799 430-438 PIN MONICA

REGIONAL Stroke Population–based Registers: case definition



The EUROCISS Working Group. European J of Public Health 2003; 13 (Suppl 3): 55-60.

ECHIM shortlist

Suggestions from the EUROCISS Project

- Attack rate as the most informative source of information for acute coronary and cerebrovascular events (it includes in- and out-of-hospital fatal and non-fatal first and recurrent events): data can be obtained through the population-based registers

- Prevalence of ischemic heart disease and cerebrovascular accidents: data can be obtained through HIS/HES


ECHIM shortlist

Suggestions from the EUROCISS Project

The manuals of operations produced by the EUROCISS Project describe the core indicators recommended by the Project and provide a simple guide and updated methods to support those EU countries lacking an appropriate cardiovascular surveillance systems but willing to implement a population-based register


AMI/ACS and Stroke Population-based Registers-Manuals of Operations

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 and Stroke Population-based Registers–Manuals of Operations

Target population

men and women aged 35-74 years

well defined geographical area

vital statistics routinely collected and easily available each year

Completeness and representativeness

Minimum of 300 fatal events every year



Data sources

Minimum sources of information required: mortality record with causes of death hospitalised discharge records with clinical

information from cardiology, heart surgery, intensive care, medical, rehabilitation, neurological/neurosurgical, stroke, other (e.g. radiology) units

nursing home and clinic autopsy register emergency and ambulance service (General Practitioner)



Onset and survival First ever or recurrent event, with non-fatal and fatal

outcome:

first ever event refers to people who have never had an event before

recurrent event: for a new episode occurring after 28 days from onset. Onset is day 1

Non-fatal event: refers to patients surviving at least 28 days after the symptoms onset

Fatal event: refers to an event causing death within 28 days of symptoms onset


AMI/ACS and Stroke Population-based Registers–Manuals of

Operations

Identification of events

Fatal events include: ICD9 codes 410-414 (ICD10: I20-I25) as underlying cause of death

Non-fatal events include: ICD9 codes 410-411 (ICD10: I20.0, I21-I22) as primary or secondary hospital discharge diagnosis

Fatal events include: ICD-9 430, 431, 432, 434, 436 (ICD-10 I60, I61, I62, I64) as underlying cause of death

Non-fatal events include the same codes as primary or secondary hospital discharge diagnosis


AMI/ACS

STROKE


Operations

Identification of events

Record linkage between mortality and hospital discharge records:

manual deterministic probabilistic

Hot and cold pursuit approaches for detecting in-hospital events



Operations

Quality control

Quality control is extremely important for a valid monitoring and comparison and depends:

completeness of cases [out of area event] completeness of information



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



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 MONICA diagnostic criteria or the New Criteria of the Joint ESC/ACC may be applied as golden standard

To validate stroke, MONICA criteria may be applied as golden standard



Operations

External Validity

All events occurring in the target population must be registered

It is important to know how representative the register is for the whole country according to: Ischemic heart disease mortality rate distribution of risk factors (socioeconomic status

and health behaviour) distribution of health service (specialized hospitals,

GPs)


EUROCISS recommends Population-based RegistersSTEPWISE Procedure

STEP 1, Target population and routine data: select a geographical administrative area (e.g. with a stable population big enough to collect more than 300 events for ICD-9 410-414 in the age range 35-74), check the availability of hospital discharge records and death certificates with underlying and secondary causes of death, identify problems with these data

STEP 2, Pilot study and validation of routine data: estimate coverage, validate discharge diagnoses and mortality causes, analyze demography and representativeness

STEP 3, Record linkage: explore the feasibility of record linkage a) within Hospital Records, b) between Hospital Records and Mortality Register, c) with other sources of information (GPs)

STEP 4, Set up a population-based register

STEP 5, Analyse and disseminate the data from the register


Stepwise procedure for HIS/HES Level of

recommendation

Health Examination Survey (HES)

Health I nterview Survey (HIS)

Minimum data collection

Height Weight Blood pressure Waist circumf erence Non-f asting blood

sample (Total cholesterol, HDL cholesterol, glucose…)

Age Sex Ethnicity Social class indicator

(income, education, occupation)

Smoking Angina qus Previous MI qus Previous stroke qus Diabetes Medication use

Minimum + 1 The above plus Fasting blood sample

(e.g. f or f asting glucose)

ECG Ankle/ brachial index Clinical exam. f or HF

The above plus Physical activity Diet Alcohol Heart f ailure qus Rose questionnaire

Minimum + 2 The above plus Echocardiography

The above plus Family history Quality of lif e Use of health services

Minimum + 3 The above plus Ultrasound of

peripheral arteries Other items

pertaining to research question

The above plus PAD questions Parity Other items pertaining to

res qus

CVD Surveys – Manuals of Operations


Conclusions

CVD are responsible of a great number of hospitalisation and deaths

Many sources of information must be integrated, including population-based registers and HIS/HES

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


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Documents

Population-based Registers in Europe: results from the EUROCISS Project Agreement n° 2003118 Simona Giampaoli Istituto Superiore di Sanità, Rome, Italy