Cardiovascular Indicators Surveillance Set
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 Diseases
Luxembourg, 19 June 2007
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 – 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, Oxford
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
Ca rdiova s cula r ndic
I ators Su rveilla n c eSet
Tools for monitoring cardiovascular disease
Type of
registers/health
surveys
Specific
disease registers
Registers based on
routine
administrative data
Surveys
Data sources
Mortality
HDR
GP Records
Mortality registers
HDR
Drug-dispensing
registers
Health interview
and/or health
examination
Data collection
Indicators
fatal and non fatal events in and outside
hospital by hot/cold pursuit
Attack rate
Incidence rate
Prevalence
Case fatality rate
Treatment
Years of life lived with
disability (YLDS)
Estimate of long-term
care needs
HDR and mortality data unlinked with or
without validation
Mortality
Hospitalisation
Length of stay
HDR and mortality data linked with or
without sample validation
Questionnaire and medical examination of
population samples
Attack rate
Case fatality rate
Prevalence
Risk factors
Ca rdiova s cula r ndic
I ators Su rveilla n c eSet
NATIONAL AMI/ACS and STROKE Population-based Registers:
population characteristics and case definition
Country
Age range
Population
(x 1000)
ICD version
Mortality
ICD codes (*)
HDR
ICD codes (*)
AMI/ACS
Mortality
ICD codes (+)
HDS
ICD codes
(+)
STROKE
Denmark
All
5,411
X
410-414,
798
410, 411,
PTCA, CABG
430-438
430-438
Finland
All
5,200
X
410-414, 428,
798, 799
410-414, 428,
PTCA, CABG
430-438
430-438
Iceland
25-74
170
IX, X
410-414, 428,
798, 799
410-412, 414,
PTCA, CABG
Sweden
All
9,011
X
410
410
430-434,
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.
Ca rdiova s cula r ndic
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REGIONAL AMI/ACS Population–based Registers: case definition
ICD version
Mortality
ICD codes(*)
HDR
ICD codes(*)
Linkage
Mortality / HDR
IX, X
410-414, 428, 798,
799
410-414, 428
PTCA, CABG
Name, date of birth
Northern Denmark
X
410
410
PIN
-
Finland
X
410, 411, 428, 798,
799
410, 411
PTCA, CABG
PIN
-
France
IX, X
410-414, 428, 798,
799, others
410-414, 428
Name, date of birth
MONICA
Germany
X
410-414, 798, 799
410, 411
PTCA, CABG
Name, date of birth
MONICA, ESC/ACC
Italy
IX
410-414, 798, 799,
others
410-414
Name, date of birth
MONICA
Norway
X
410
410
PTCA, CABG
PIN
Spain
IX
410-414, 428, 798,
799
410-414
Name, date of birth
MONICA
Northern Sweden –
MONICA
X
410, 411
410, 411
PIN
MONICA
Country
Belgium
Validation
ECG, enzymes,
symptoms, MONICA
-
(*) 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.
Ca rdiova s cula r ndic
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REGIONAL Stroke Population–based Registers: case definition
Country
Finland
ICD version
Mortality
ICD codes
HDR
ICD codes
Linkage
Mortality / HDR
X
430-432, 435, 436
430-432, 435, 436
PIN
Validation
MONICA
WHO
clinical
criteria,
CT-Scan or
MRI
France
X
430-438, 442.81
430-438, 442.81
Name, date of birth
Germany
X
430-438
430-438
Name,
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
(*) 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.
Ca rdiova s cula r ndic
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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-ofhospital 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
Ca rdiova s cula r ndic
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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
Ca rdiova s cula r ndic
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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
Ca rdiova s cula r ndic
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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
Ca rdiova s cula r ndic
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AMI/ACS and Stroke Population-based Registers Manuals of Operations
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)
Ca rdiova s cula r ndic
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AMI/ACS and Stroke Population-based Registers Manuals of Operations
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
Ca rdiova s cula r ndic
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AMI/ACS and Stroke Population-based Registers Manuals of Operations
Identification of events
AMI/ACS


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
STROKE


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
Ca rdiova s cula r ndic
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AMI/ACS and Stroke Population-based Registers Manuals of Operations
Identification of events

Record linkage between mortality and hospital
discharge records:




manual
deterministic
probabilistic
Hot and cold pursuit approaches for detecting inhospital events
Ca rdiova s cula r ndic
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AMI/ACS and Stroke Population-based Registers Manuals of 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
Ca rdiova s cula r ndic
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AMI/ACS and Stroke Population-based Registers 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
Ca rdiova s cula r ndic
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AMI/ACS and Stroke 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 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
Ca rdiova s cula r ndic
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AMI/ACS and Stroke 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 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)
Ca rdiova s cula r ndic
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EUROCISS recommends Population-based
Registers
STEPWISE 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
Ca rdiova s cula r ndic
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CVD Surveys – Manuals of Operations
Stepwise procedure for HIS/HES
Level of
recommendation
Health Examination
Survey (HES)
Minimum data
collection
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

Height
Weight
Blood pressure
Waist circumference
Non-fasting blood
sample (Total
cholesterol, HDL
cholesterol, glucose…)
Health Interview Survey
(HIS)


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
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

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. for fasting
glucose)
 ECG
 Ankle/ brachial index
 Clinical exam. for HF
The above plus
 Physical activity
 Diet
 Alcohol
 Heart failure qus
 Rose questionnaire
Minimum + 2
The above plus
 Echocardiography
The above plus
 Family history
 Quality of life
 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
Ca rdiova s cula r ndic
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Conclusions
Ca rdiova s cula r ndic
I ators Su rveilla n c eSet
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
http://www.cuore.iss.it/eurociss/en/progetto/progetto.asp