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Best Practice & Research Clinical Anaesthesiology 27 (2013) 293–306

Contents lists available at ScienceDirect

Best Practice & Research Clinical


Anaesthesiology
journal homepage: www.elsevier.com/locate/bean

Epidemiology and management of cardiac


arrest: What registries are revealing
Jan-Thorsten Gräsner, MD, Medical Director Emergency
Medicine a, b, *, Leo Bossaert, MD, Representative of the
Advisory Committee, ERC Board c, d
a
University Hospital Schleswig-Holstein, Campus Kiel, Department of Anaesthesiology, Schwanenweg 21,
24105 Kiel, Germany
b
German Resuscitation Registry, Klinik für Anästhesiologie und Operative Intensivmedizin, Schwanenweg
21, 24105 Kiel, Germany
c
University of Antwerp, Antwerp, Belgium
d
European Resuscitation Council, Universiteitsplein 1, 2610 Wilrijk, Belgium

MeSH keywords: Major European institutions report cardiovascular disease (CVD) as


sudden cardiac arrest the first cause of death in adults, with cardiac arrest and sudden
epidemiology death due to coronary ischaemia as the primary single cause.
registries Global incidence of CVD is decreasing in most European countries,
organization and administration due to prevention, lifestyle and treatment. Mortality of acute cor-
Resucitation
onary events inside the hospital decreases more rapidly than
outside the hospital. To improve the mortality of cardiac arrest
outside the hospital, reliable epidemiological and process figures
are essential: “we can only manage what we can measure”. Europe
is a patchwork of 47 countries (total population of 830 million),
with a 10-fold difference in incidence of coronary heart disease
between North and South, East and West, and a 5-fold difference
in number of EMS-treated cardiac arrest (range 17–53/1000,000/
year). Epidemiology of cardiac arrest should not be calculated as a
European average, but it is appropriate to describe the incidence of
cardiac arrest, the resuscitation process, and the outcome in each
of the European regions, for benchmarking and quality manage-
ment. Epidemiological reports of cardiac arrest should specify
definitions, nominator (number of cases) and denominator (study
population). Recently some regional registries in North America,

* Corresponding author. Department of Anaesthesiology, Kiel Campus, Schleswig-Holstein University Hospital, Schwanenweg
21, 24105 Kiel, Germany. Tel.: þ49 1722806241.
E-mail addresses: graesner@reanimationsregister.de, jan-thorsten.graesner@uksh.de (J.-T. Gräsner), Leo.bossaert@erc.edu (L.
Bossaert).

1521-6896/$ – see front matter Ó 2013 Elsevier Ltd. All rights reserved.
http://dx.doi.org/10.1016/j.bpa.2013.07.008
294 J.-T. Gräsner, L. Bossaert / Best Practice & Research Clinical Anaesthesiology 27 (2013) 293–306

Japan and Europe fulfilled these conditions. The European Registry


of Cardiac Arrest (EuReCa) has the potential to achieve these ob-
jectives on a pan-European scale. For operational applications, the
Utstein definition of “Cardiac arrest” is used which includes the
potential of survival. For application in community health, the
WHO definition of “sudden death” is frequently used, describing
the mode of death. There is considerable overlap between both
definitions. But this explains that no single method can provide all
information. Integrating data from multiple sources (local, na-
tional, multinational registries and surveys, death certificates,
post-mortem reports, community statistics, medical records) may
create a holistic picture of cardiac arrest in the community.
Ó 2013 Elsevier Ltd. All rights reserved.

Introduction

Sudden death due to cardiac arrest represents one of the greatest challenges facing modern
medicine, not only because of the massive number of cases involved but also because of its tremendous
social and economic impact.
The association between cardiac arrest and coronary ischaemia has been recognized for thou-
sands of years. The Ebers Papyrus from Egypt, dating from approx. 1550 BC, notes that ‘If a patient has
pain in the arm and left side of the chest, there is a threat of death.’ An ancient Chinese medical text
observes that ‘An intermittent pulse is a predictor of imminent death.’ The American-European
resuscitation pioneer Peter Safar (1924–2003) noted in 1981 that ‘one-fifth of those who die from
coronary heart disease are under 65 years old [1]. Coronary artery disease is the most frequent cause
of “sudden cardiac death,” which is defined as “unexpected cardiac arrest without pre-arrest
symptoms or with symptoms of <1 h duration.” Two-thirds of these deaths occur outside hospi-
tal’ [1].

Epidemiology of cardiovascular diseases, sudden death and cardiac arrest: global perspectives

In approximately 80% of cases, the aetiology of sudden cardiac death is coronary artery disease. The
epidemiology of sudden cardiac death parallels that of coronary heart disease [2], and it is therefore
sensible to place an epidemiological analysis of the epidemic of cardiac arrest and sudden unexpected
death in the wider perspective of coronary heart disease.
The major international health-care organizations provide reliable facts and figures about health
and disease, both worldwide and in Europe. These reports are based on a wide variety of published
surveys, but there may be some degree of inclusion bias due to the data collection methods used:

 Historical and current data are taken from national or local registries and surveys.
 The periods investigated in research studies may be short, or may extend over many years.
 Some reports are based on national data classified using the International Classification of Dis-
eases, Injuries, and Causes of Death (ICD), or on activity reviews carried out by emergency medical
services.
 Some databases are retrospective, while others are prospective.
 Some reports use death certificates, although the major inaccuracies and limitations associated
with these are well known.

Sources of epidemiologic data on cardiovascular diseases

 The World Health Organization (WHO) reports data for all of the world’s regions. Its most recent
report for the European region is The European Health Report 2012: Charting the Way to Well-
being [3]. Eurostat is the statistical office of the European communities. For that purpose it
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gathers and analyses figures from the national statistical offices across Europe [4]. The European
Commission supports the European Heart Network to produce European Cardiovascular Dis-
ease Statistics [5].
 Life expectancy at birth has increased by 5 years since 1980, reaching 76 years in 2010, with a range
varying from country to country of 69–82 years. A further increase to an average of nearly 81 years
is expected by 2050.
 The European population is ageing rapidly. In 2010, an estimated 15% of the total population was
aged 65 years or over, an increase of nearly 30% since 1980. By 2050, it is estimated that 25% of the
population will be aged 65 or over. Members of the ‘baby-boom’ generation are now reaching an
age at which they are likely to become more vulnerable to major cardiovascular events, although
preventive measures and wide access to excellent treatment have alleviated the effects of this.
 Overall mortality from all causes of death is continuing to decline, with the age-standardized death
rate decreasing to 831 per 100,000 in 2010. This trend is clearer in western European countries
than in eastern European countries.
 Cardiovascular disease is still the leading cause of death, accounting for nearly 50% of all deaths,
with a range varying from country to country of 30–65%. It is also important to note that more that
70% of mortality occurs in those aged over 65. The European average rate of premature mortality
(<65 years) from ischaemic heart disease is 47 per 100,000. This rate is generally decreasing in
western European countries, but is stagnating or even increasing in some eastern European ones.
 Overall, CVD is estimated to cost the European Union (EU) economy almost V196 billion a year. Of
the total cost of CVD in the EU, around 54% is due to health-care costs, 24% due to productivity
losses and 22% due to the informal care of people with CVD.

Epidemiology of cardiac arrest

For many years, the magic figure of one per 1000 population per year was generally accepted as an
estimate of the annual incidence of sudden death in the industrialized world, with a survival rate of 6%.
This estimate was based on large numbers of published reports of local, regional, national and
multinational experience in the management of cardiac arrest. In 2004, Rea et al. reviewed the inci-
dence and outcome in cases of out-of-hospital cardiac arrest treated by the emergency medical service
(EMS) as reported by 35 centres in the United States [6]. The data represented 62 million person-years
of observation in the study period 1980–2003. The overall all-rhythm incidence was 55/100,000/year
(range 17–128/100,000/year), and the overall rate of survival to hospital discharge was 8.4% (range 1.8–
21.8%). Atwood et al. reviewed the incidence and outcome of ‘EMS-treated out-of-hospital sudden
cardiac arrest’ events as reported by 37 communities in Europe [7]. The data represented 48 million
person-years of observation in the study period 1980–2008. The overall all-rhythm incidence was 37.7/
100,000/year (range 5.5–119.5/100,000/year). The overall rate of survival to hospital discharge was
10.7% (range 3.6–30.7%). In 2010, Berdowski et al. reviewed the incidence and outcome of EMS-treated
or EMS-attended out-of-hospital cardiac arrest events as reported by 30 European, 24 North American,
seven Asian and six Australian communities [8]. During the study period, 1989–2009, the total pop-
ulation investigated in the European studies was 28 million. The overall all-rhythm incidence in Eu-
ropean centres was 81.6/100,000/year (range 19.2–173.6/100,000/year). The overall rate of survival to
hospital discharge was 10.0% (range 6–22%).
The major international guidelines for cardiopulmonary resuscitation (CPR) and emergency cardiac
care also include estimates of the incidence of cardiac arrest in the relevant populations.

International Liaison Committee on Resuscitation (ILCOR) Consensus on Science and Treatment


Recommendations (CoSTR) (2010)
‘The average crude incidence of cardiac arrest for all ages is 83 per 100,000 population.’ Measuring
the global incidence of cardiac arrest is challenging, as many different definitions of patient pop-
ulations are used. When Europe, North America, Asia and Australia were compared, no significant
differences were found in the incidence of out-of-hospital cardiac arrest (OHCA) or the incidence of
patients with all causes of arrest in whom resuscitation was attempted. The incidence of patients with
OHCA considered for resuscitation is lower in Asia (55/100,000/year) than in Europe (n ¼ 86), North
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America (n ¼ 94), and Australia (n ¼ 113). The incidence of patients in OHCA with a presumed cardiac
cause in whom resuscitation is attempted is higher in North America (58/100,000/year) than in the
other three continents (35 in Europe, 32 in Asia, and 44 in Australia) [9].

European Resuscitation Council (ERC) Guidelines for Resuscitation (2010)


In Europe, cardiovascular disease accounts for around 40% of all deaths in individuals under the age
of 75. Sudden cardiac arrest is responsible for more than 60% of adult deaths from coronary heart
disease. Summary data from 37 communities in Europe indicate that the annual incidence of EMS-
treated out-of-hospital cardiopulmonary arrests (OHCAs) for all rhythms is 38 per 100,000 popula-
tion. On the basis of these data, the annual incidence of EMS-treated ventricular fibrillation (VF) arrest
is 17 per 100,000, and the rate of survival to hospital discharge is 10.7% for all-rhythm and 21.2% for VF
cardiac arrest. Recent data from 10 sites in North America are remarkably consistent with these figures.
The median rate of survival to hospital discharge was 8.4% after EMS-treated cardiac arrest from any
rhythm and 22.0% after VF. There is some evidence that long-term survival rates after cardiac arrest are
increasing.
At the initial heart rhythm analysis, about 25–30% of OHCA victims are found have VF, a percentage
that has been declining over the last 20 years. It is likely that many more victims have VF or rapid
ventricular tachycardia (VT) at the time of collapse, but that the rhythm has deteriorated to asystole by
the time the first electrocardiogram (ECG) is recorded by EMS personnel. When the rhythm is recorded
soon after collapse, particularly using an on-site automated external defibrillator (AED), the proportion
of patients in VF can be as high as 59–65%.
The reported incidence of in-hospital cardiac arrest is more variable, but lies in the range of 1–5 per
1000 admissions. Recent data from the American Heart Association’s national CPR registry indicate that
the rate of survival to hospital discharge after in-hospital cardiac arrest is 17.6% (for all rhythms).The
initial rhythm is VF or pulseless VT in 25% of cases, and 37% of these patients survive to leave hospital;
after pulseless electrical activity (PEA) or asystole, 11.5% survive to hospital discharge.

American Heart Association (AHA) Guidelines for Cardiopulmonary Resuscitation (2010)


While the exact incidence of cardiac arrest is uncertain, estimates are available from published and
publicly available sources. Each year in the United States (population 314 million) and Canada (35
million), approximately 350,000 people suffer cardiac arrest and receive attempted resuscitation, with
about half of these cases occurring outside hospital and half occurring in hospital. This estimate does
not include the substantial number of victims who suffer arrest and do not receive attempted resus-
citation. In the out-of-hospital setting, the estimated incidence of EMS-treated arrest in the U.S. and
Canada is approximately 50–55/100,000/year, with approximately 25% presenting with ventricular
tachy-arrhythmias. In the hospital setting, the estimated incidence of treated arrest is 3–5 per 1000
admissions, with approximately 12% presenting with ventricular tachy-arrhythmias. Cardiac arrest
victims who present with ventricular fibrillation, in comparison with asystole or pulseless electrical
activity, have a substantially better survival rate.
Regardless of the arrest setting, the vast majority of cardiac arrest victims are adults. However,
thousands of children still suffer arrest each year in the U.S. and Canada, both in and out of the hospital.
Overall, cardiac arrest continues to be a common cause of premature mortality, and incremental
improvements in survival can be equivalent to thousands of lives saved.

Joint American College of Cardiology (ACC)/American Heart Association (AHA) and European Society of
Cardiology (ESC) Guidelines (2006)
The ACC, AHA and ESC published joint guidelines in 2006 on the management of patients with
ventricular arrhythmias and prevention of sudden cardiac death (SCD) [10]. The geographical inci-
dence of SCD varies in relation to the prevalence of coronary heart disease (CHD) in different re-
gions. Estimates for the United States range from less than 200,000 to more than 450,000 SCDs
annually. The variation is partly due to the inclusion criteria used. The overall event rates in Europe
are similar to those in the U.S., with significant regional variations. The time factor has a strong
influence on the epidemiological data. Using a definition including 1 h from the onset of symptoms,
13% of all deaths represent SCD, whereas the figure is 18.5% if a 24-h definition is used.
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Approximately 50% of all CHD deaths are sudden and unexpected, occurring within 1 h of a change
in clinical status. Due to the growth and ageing of the population in the United States and Europe,
the decreasing age-adjusted mortality from CHD does not imply any change in the absolute numbers
of sudden cardiac deaths.
Cardiac arrest is characterized by an abrupt loss of effective blood flow, leading immediately to loss
of consciousness and death if not treated. The most common mechanisms for cardiac arrest are ven-
tricular fibrillation and pulseless ventricular tachycardia. Recent studies have suggested that the
proportion of SCDs initiated by VF/VT may be lower than the 75–80% previously estimated. It is
strongly recommended that the sequential steps in the survival chain as recommended by the ERC,
AHA and ILCOR should be initiated.

Epidemiological studies – background and challenges

The discipline of epidemiology investigates the incidence of a well-defined condition, the risk
factors involved in it and the outcomes, in relation to a well-defined population during a well-defined
study period. The reported incidence depends on the way in which the population is defined. Although
the incidence of sudden death is low in the general population, the total number of events can be
extremely large due to the size of the target population. The incidence of sudden death in the high-risk
population (those with heart failure, survivors of VF) is much higher, but the total number of events is
relatively low because of the much smaller size of the target population [11].
Epidemiological data are essential tools for description, benchmarking and quality management in
the acute care provided for victims of cardiac arrest. Registries are a necessary and valuable addition to
randomized controlled trials and other types of clinical study. The correct understanding and use of
epidemiological data require clear definitions of both the numerator and the denominator being used.
Epidemiological data also require clear definitions of the variables being investigated.
The standard Utstein definition [12–14] of cardiac arrest is ‘the cessation of cardiac mechanical
activity as confirmed by the absence of signs of circulation’. However, other definitions are also used by
international organizations and in textbooks, such as the traditional definition, ‘Sudden cardiac death
describes the unexpected natural death from a cardiac cause within a short time period, generally 1 h
from the onset of symptoms, in a person without any prior condition that would appear fatal.’ Diffi-
culties in analysing values and options may arise due to these different definitions [4].
Do the two definitions above represent two estimates of the same condition? Can data based on
them be interchanged, added together and compared? Reliable data regarding the epidemiology of
cardiac arrest are difficult to obtain, for several reasons:

 The timing of and methods used for data collection may differ (in national or local surveys and
registries, death certificates, autopsy data, historical or current data), and these methodological
differences may lead to limitations.
 Different definitions may be used for the numerator (sudden cardiac arrest, sudden cardiac death,
sudden unexpected death) and for the denominator (population being considered).
 Different definitions may be used for the end points being investigated: return of spontaneous
circulation (ROSC), hospital admission, survival until hospital discharge, neurologically intact
survival at 30 days.
 In addition, epidemiological data are time-sensitive, since demographic structures and the in-
terventions used may change significantly over time (age pyramid, life expectancy, migration,
treatment, prevention, economic factors). Epidemiological figures for cardiac arrest during the
20th century have historical value, but should not be mixed together with 21st-century data.

Reports on the epidemiology and outcome of sudden death and cardiac arrest should therefore be
interpreted with care and with a good understanding of the timing, methods and definitions involved.
No single method of data collection is capable of providing a complete picture of the epidemiology of
cardiac arrest and its outcome, and the different sources of information must be treated as comple-
mentary in providing a realistic, integrated understanding of the situation.
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Definition of cardiac arrest and outcome

A wide variety of definitions are used in the literature to define the event:

 Sudden (unexpected) (premature) (cardiac) death


 (Sudden) cardiac arrest
 Out-of-hospital cardiac arrest (OHCA): attended/treated by the emergency medical service (EMS)
 In-hospital cardiac arrest (IHCA).

A wide variety of inclusion criteria are used to enter data into databases:

 All cardiac arrests


 Events attended by the EMS
 Events during which CPR was initiated by the EMS
 All, cardiac, shockable rhythm, witnessed, bystander CPR, CPR <4 min, defibrillation <8 min,
emergency department
 In-hospital and out-of-hospital events
 Different time windows may be used for the concept ‘sudden’ (1, 2, 6, 24 h)
 All ages.

In addition, a wide variety of end points are used to describe the outcome after cardiac arrest:

 Death on arrival
 Return of spontaneous circulation (ROSC)
 Hospital admission
 Hospital discharge
 Neurologically intact survival at 30 days.

Other considerations are equally important for careful and appropriate interpretation of the liter-
ature data. Data collection is complex and requires input from the EMS, the hospital and the com-
munity. The information from these different sources has to be aggregated into a single record held by a
coordinating data centre [15]. Quality control determines the validity of the reported data, and a wide
variety of systems are used for collecting data. There are national databases, multicenter national and
regional registries, and local registries. In some reports, different definitions may be used even in the
same study. Usually, the information about methods can be retrieved from the methods section of
many individual reports, but this information may be superficial in some cases or even missing in
others.

Did the Utstein initiative resolve these discrepancies?

Well-organized regional and national EMS systems have been available for some 50 years, and a
wealth of comparable data on experiences regarding the incidence and outcome of cardiac arrest might
have been expected. However, this has not been the case, partly due to a lack of resources, the lack of
uniformity in the definitions used, and probably also due to reluctance to report suboptimal results.
Several reports have already emphasized the need for uniform definitions and critical data and for a
uniform format for reporting on populations, processes and outcomes in cardiac arrest and resusci-
tation. This type of standardization is essential for exchanging information, for internal and external
auditing, for international benchmarking and for quality management.
In 1990, experts from the International Liaison Committee on Resuscitation (ILCOR) met at Utstein
Abbey, on a remote Norwegian island, and later in Surrey in the United Kingdom, to establish uni-
formity in the definitions and language used to report on cardiac arrest and resuscitation. The Utstein
template for out-of-hospital cardiac arrest was published in 1991, followed in 1997 by a template for in-
hospital cardiac arrest. The recommended nomenclature was updated in 2004 [12–14].
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The Utstein definition of cardiac arrest (‘The cessation of cardiac mechanical activity, confirmed by
the absence of a detectable pulse, unresponsiveness and apnoea. No comment on time or suddenness is
recommended’) is now widely accepted by the international resuscitation research community. The
WHO term ‘sudden death’ is frequently used in major multinational reports, but it should be recog-
nized that this definition may introduce challenges for data accuracy for various reasons, such as the
time interval being used and the clinical condition involved. The Utstein nomenclature may resolve
this, but the authors have also recognized several obstacles to wide implementation of an international
registry:

 Organizing the sources needed to start data collection (police, EMS, general practitioners, hospital,
laypeople, health-care systems)
 Organizing inclusion in a ‘central’ registry: local, regional, national, and international
 Issues involving ownership of the data, accuracy, completeness, quality, security, privacy, legisla-
tion on data protection, resources, organizational structure, cost
 Ensuring linkage of data from different sources (patient census, death certificates, EMS, emergency
department, hospital, community) to be aggregated into the central registry

The traditional definition of cardiac arrest quoted above refers to the physiopathological circum-
stances and the cause of the event. This definition may lead to inaccuracy: the time frame involved is
arbitrary, and ‘cardiac cause’ is a post-hoc finding that is often distorted by use of the expressions
‘presumed cardiac cause’ or ‘no apparent non-cardiac cause’.
By contrast, the Utstein definition of cardiac arrest quoted above describes the presentation of the
event. This definition includes all circulatory arrest events, with no obvious signs of death. This is
ambitious; in some countries and for legal reasons, it is not possible for death to be diagnosed by
ambulance personnel (with the exception of signs of prolonged death, decapitation, or rigor mortis).
The aim with the standard Utstein nomenclature was to provide uniformity in the reporting of cardiac
arrest, resuscitation and outcomes. However, Utstein has not achieved the ambitious goal of creating
uniformity in the language and definitions used for both the epidemiology of the disease and the
processes involved in intervention.
What are the figures used for?

 Epidemiology: to describe the extent of the problem for purposes of increasing public awareness
and for policy-makers and decision-makers
 Chain of survival: to describe the process, for health-care professionals
 At the European level, to provide a Europe-wide picture of the problem in order to motivate and
convince political and scientific authorities in Europe
 For benchmarking, learning from others and quality management.

The denominator: the study population

Accurate and up-to-date population figures are available for individual European countries. How-
ever, unambiguous figures for the complete population of Europe are less clear and depend on the
definition of the borders of Europe is used. In the definition of the European region used by the World
Health Organization (WHO) (www.euro.who.int), the European region included 53 countries and a
population of 900 million in 2010. This definition includes the population of the Asian part of Turkey
and the Asian part of Russia, but also the Caucasian countries and Israel.
This definition coincides to some extent with that used by the Council of Europe (CoE) (www.coe.
int), but does not include the Eastern European countries in the Caucasus and around the Caspian Sea.
According to the latter definition, Europe is a patchwork of 47 countries with a total population of 830
million.
In the definitions used by the European Commission (EC, a different organization from the CoE) and
by the United Nations, Europe is bordered by the Ural and Caucasian mountains and the Bosporus, and
does not include the Asian parts of Russia or Turkey (http://epp.eurostat.ec.europe.eu). Using this
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definition, the total population of the 47 countries of Europe is 741 million, according to a recent census
in 2013 (www.wikipedia.org/wiki).
The definition of Europe used by the European Union (EU) is a political definition, and this is
restricted to the 27 EU member states.

ERC definitions of Europe

The European Resuscitation Council (ERC) is a network of National Resuscitation Councils (NRCs).
The activities of the Russian and Turkish resuscitation councils cover the entire territory of those
countries. In its educational and awareness campaigns, the ERC also focuses on the complete territory
of all the NRCs. For pragmatic reasons, the ERC has therefore chosen to use the Council of Europe’s
definition of Europe: 47 countries with a total population of 830 million. For other purposes, however,
other definitions may be used.
In addition to these figures, the real population figures recorded in a registry are decisively
important for subsequent calculations. National records are easier to use here than regional registries,
in which the figure in the denominator can be altered due to operations involving different emergency
facilities or operations outside the region’s geographical boundaries on which calculations are based.
Clear definitions are needed in order to avoid erroneous analyses.

The numerator: cardiac arrest and sudden death

The concepts ‘sudden death’ and ‘cardiac arrest’ are closely linked. ‘Cardiac arrest’ usually refers to a
potentially reversible life-threatening cessation of effective cardiac mechanical activity, leading to loss
of consciousness and accompanied by respiratory arrest. ‘Sudden death’ usually refers to the final stage
of a cardiac arrest, with no resuscitation attempts taking place or attempts that have failed. Death is
irreversible. Sudden death usually has cardiovascular causes: probably up to 80% of cases are cardiac
(these may be called ‘sudden cardiac death’), 10% vascular and 10% non-cardiac [16]. Most cardiac
causes are ischaemic in nature, but other forms of vulnerability of the heart such as heart failure,
cardiomyopathies, ion channel disorders and conduction disturbances are involved in a minority of
events.

Scientific analyses of cardiac arrest and resuscitation

Randomized controlled trials (RCTs) provide insights into the value of specific treatments or
treatment strategies in a well-defined section of a population. Registries do not compete with clinical
studies, but rather represent a useful supplement to them. Surveys and registries provide insights into
the ways in which scientific findings and guidelines are being implemented in clinical practice.
However, as with clinical studies, comprehensive preparations are needed in order to establish a
registry. This is all the more decisive because not all of the questions that may arise are known at the
time when the registry is established. The validity of registries may be limited generally as a result of
incomplete data collection, inadequate representativeness, impracticable questionnaires and inade-
quate financial resources [17]. Surveys are usually limited in time, whereas registries are usually
longitudinal. They may cover a single centre or multiple centres, or large regions.
Epidemiological studies provide insights into well-defined characteristics and outcomes in a spe-
cific population [18]. These methods provide valuable complementary information, but it should be
emphasized that the study population needs to be representative of the condition and that the
methods, statistical power, case definitions, outcome definitions and recruitment need to be well
understood before the data are compared. It should be clear that studies of the management and
outcome of patients admitted to a centre with an acute coronary syndrome may only generate con-
clusions about the patients admitted with this condition, and not about the total population.
In addition, registries have the advantage that during the usage of routine data and analysis of the
factual realities of the care being provided, they allow statistical methods to be used starting from an
appropriate registry size and also make post-hoc analysis possible – in the form of matched-pair
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analyses, for example. Especially when studies are limited as a result of patients declining participation,
this can be particularly important.

Longitudinal studies in North America

AHA heart disease statistics (2013)


The annual ‘heart disease and stroke statistics’ published by the AHA include annual updates of
epidemiological data on OHCA and ischaemic heart disease [19]. According to the 2013 update for the
total population of the U.S. (including 313,794,736 individuals, according to the 2012 government
census; www.census.gov) and on the basis of the 2012 data from the Resuscitation Outcomes Con-
sortium (ROC), it was concluded that there were 359,400 cases of OHCA. About 60% of these were
treated by the EMS; 24% had a shockable rhythm as the initial presenting rhythm. The rate of survival to
hospital discharge for all rhythms was 9.5% for adults and 7.8% for children.

Cardiac Arrest Registry to Enhance Survival (CARES)


The CARES registry is based on OHCA events of presumed cardiac aetiology in persons of all ages
who receive resuscitation, including CPR and defibrillation. OHCA is defined in accordance with Utstein
as a cessation of cardiac mechanical activity that occurs outside the hospital and is confirmed by an
absence of signs of circulation. Although OHCA may occur from non-cardiac causes, 70–85% of these
events have a cardiac cause. It is thought that each year, approximately 300,000 individuals in the
United States experience an OHCA and that 92% of them will eventually die as a result [20].
In a survey of more than 40,000 OHCA records in 46 EMS centres, covering a population of 22.7
million in 2005–2010, an overall rate of survival to hospital discharge of 9.6% was reported. The events
occurred at home in two-thirds of the cases; 61% of the patients were male and 72% were aged 35–79
years. Approximately 37% of the OHCA events were witnessed by a bystander, and 33% of the patients
received bystander CPR. An AED was only used in 3.7% of the cases. The survival rate was 30.7% in cases
of witnessed collapse with a shockable rhythm.

Resuscitation Outcomes Consortium (ROC)


The ROC Epistry-Cardiac Arrest is a prospective multicenter observational registry of OHCAs in 11
North American study sites. All OHCA cases occurring in the catchment area of the EMS site are
included. All cases of cardiac arrest that occurred outside the hospital and were evaluated by the EMS
and considered for CPR were included. In a 2008 report, the total population served by the 225
participating EMS agencies was 21.4 million and 20,520 events were included. The annual incidence
was 95 per 100,000. The emergency medical services attempted CPR in 11,898 events. Most of the
events took place at home (85%), 23% were witnessed by bystanders, and 19% of the patients received
bystander CPR. The average rate of total survival to discharge was 4.4 for EMS-assessed events, 7.9% for
EMS-treated events and 21% for events with VF as the presenting rhythm [21–23].

Resuscitation and Cardiac Arrest Registries in Europe

Longitudinal European studies


Different models can be used for collecting epidemiological data about acute coronary events and
sudden cardiac arrest. The Swedish Cardiac Arrest Registry, the German Cardiac Arrest Registry and the
ARREST project in the Netherlands may serve as models for good-quality reporting of data on OHCA
and IHCA.

The Swedish Cardiac Arrest Registry (SCAR)


This national resuscitation registry covers a population of 9 million. Participation is voluntary. Based
on a development period of more than 20 years, the registry has recorded resuscitation attempts
throughout the entire country since 2009 and has reported an estimated recording rate of 70–100% of
cardiac arrests in which resuscitation was attempted. The organization is managed by the national
resuscitation council. Data based on the run sheet are recorded online. In addition, the coordinating
302 J.-T. Gräsner, L. Bossaert / Best Practice & Research Clinical Anaesthesiology 27 (2013) 293–306

centre organizing the registry receives information from the admitting hospital, including discharge
status, so that the variables needed to analyse the resuscitation data can be completed [24–27].

The German Cardiac Arrest Registry


The German Resuscitation Registry was founded in 2007 in order to analyse and optimize the
relevant measures. The registry documents the course in patients who have undergone resuscitation at
the time points of ‘first aid’, ‘further management’ and ‘long-term outcome’ and it can therefore provide
a complete presentation of the procedures carried out and the quality of the outcomes. In addition,
important scientific questions can be answered from the database, which at present contains details of
31,000 resuscitations. For example, a score for benchmarking the outcome quality after out-of-hospital
resuscitation, known as the ROSC after cardiac arrest (RACA) score, has been developed. The major
significance of percutaneous catheter interventions and active cooling after cardiac arrest has also been
demonstrated. In the future, it is intended that the German Resuscitation Registry platform will be
further expanded to allow interdisciplinary information exchanges and scientific research [28–31].

The ARREST project in the Netherlands – North Holland ARREST


The ARREST registry reports on all emergency service – attended cases of out-of-hospital cardiac
arrest in the province of North Holland. The population served remained stable at 2.45 million during
the study period, 2006–2011. The incidence of reported OHCAs increased from 66/100,000/year in
2006 to 77 in 2011, but the number of EMS-attempted resuscitations remained stable at 46–48/
100,000/year. The patients’ mean age (66 years), the location of the OHCA (68% at home), and the rates
of VF/VT as the initial rhythm (46%) remained more or less stable. However, there was a significant
increase in the use of AEDs (from 21% to 51%). The rate of overall survival to hospital discharge
increased from 18% in 2006 to 23% in 2011 [8,32].

European Registry of Cardiac Arrest (EuReCa)


In 2007, the ERC initiated a campaign for Europe-wide collaboration in a European registry to record
and analyse cases of cardiac arrest [16]. The establishment of a European resuscitation registry is
intended to allow international analysis of resuscitation treatments in different emergency service
systems. EuReCa is intended both to offer existing registries an option to collaborate internationally,
providing a platform for joint scientific activities, and also to offer additional countries and regions
access to the scientific opportunities available.
To achieve this, it is necessary to identify common features and differences, particularly with regard
to the measures carried out and the results obtained, in order to achieve standardization of the shared
database on the basis of the national and regional registries. Identifying the strongest and weakest
members of the chain of care in each participating country, and evaluating ways of developing
resuscitation treatments further, should make it possible to further optimize patient care. In addition,
establishing a joint European registry is intended to compensate for the limited opportunities for
randomized controlled clinical studies resulting from requirements in research on resuscitation pa-
tients, and it should be able to provide answers on the basis of registry data.
An initial analysis of the data has provided information about the data included and the methods of
data collection and analysis that are used in the five national and regional registries included. The
participating registries cover a population of 32.2 million citizens in Europe and represent national
databases (Sweden and Belgium), regional care structures (Andalusia, North Holland) and national
systems that are not fully comprehensive (Germany). The five registries include data on the assessment
of the resuscitation treatment and its results, but not data for all sections of the chain of care. The
reasons for these differences lie both in the structure of each registry (publicly supported vs. run by
specialist societies), sponsorship (national, official registries, as in Belgium, vs. registries within a
specialist society, as in Germany) and in national data protection requirements. Despite standardized
international recommendations, different datasets and different inclusion and exclusion criteria are
present. This makes direct comparison of the results more difficult. Initial comparative studies have
been carried out for the present study on the basis of the 12,466 sets of resuscitation data included. To
allow better comparability and exclude any selection bias, the results were calculated for 100,000
population/year.
J.-T. Gräsner, L. Bossaert / Best Practice & Research Clinical Anaesthesiology 27 (2013) 293–306 303

Fig. 1. Second analysis of 8(9) different systems all over Europe has already indified marked differences in the incidence of CA and
the real number of CPR treatment. CA, cardiac arrest; CPR, cardiopulmonary resuscitation.

The results showed that there are different incidences of attempted resuscitation, ranging from 17.1
per 100,000 population per year in Andalusia to 53.0/100,000/year in Belgium. Differences were also
noted in relation to other time points considered, such as hospital admission and hospital discharge
rates. Conclusions for the European registry were based on differences in the dataset definitions, data
sources and initial results. Although standardization to 100,000 population per year precludes any
selection bias in which only ‘positive’ resuscitation results are recorded, it does not exclude the pos-
sibility of missing records. When there are differing results, the question therefore has to be clarified of
whether the differences are caused by imperfect or incomplete data collection or whether they are
based on real differences in the care provided and results obtained. This will be a task for future studies.
It is already possible to review the reasons for a low incidence of cardiac arrest cases. Potential
causes may include alternative alarm routesde.g., a need to phone the general physician first before
the emergency service is calleddsocial context, structural conditions such as long journey times, and
large numbers of patients’ advance health-care directives. When one looks at differences between
recognized cardiac arrest and the start of resuscitation, substantial differences ranging from 100% to
less than 50% rates of starting CPR are also evident, for which there is as yet no adequate explanation
(Fig. 1).

New results from follow-up studies in EuReCa


Current studies on lay resuscitation in the now larger group of participants in EuReCa underline the
need for international comparison and mutual learning. The rate of lay resuscitation, as an important
initial treatment bridging the time until the arrival of professional therapy, varies from 10% to over 70%
(Fig. 2). Providing feedback on these results to the national registries and thus national participating
partners, and exchanging information about the various national training and implementation stra-
tegies being used, may provide participants with new options. EuReCa can therefore also be regarded
as an expert platform.

Fig. 2. Among the participants in the EuReCa project, the rate of lay resuscitation, as an important initial treatment bridging the time
until the arrival of professional therapy varies from 10% to over 70% (y axis ¼ %).
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Further services provided by EuReCa


As an additional component, EuReCa can also assist countries that are interested in setting up their
own resuscitation registries. Experience from the 15 existing registries is available for the purpose. In
addition to this experience, individual partners (such as Spain) are currently developing Internet-based
recording and analysis facilities that can also be used in other countries for their own national
registries.

Limitations of EuReCa
EuReCa is an initiative that is managed and financed by the ERC. Only very limited overall financial
resources are available for it, and this limits the options available. The national registries and their
representatives therefore have greater responsibility for the overall project.

Practice points

 The epidemiology of sudden cardiac death (SCD) and sudden cardiac arrest (SCA) parallels the
epidemiology of coronary heart disease (CHD).
 CHD is more prevalent in eastern and northern parts of Europe in comparison with its
western and southern parts.
 The mortality from CHD is declining, although this is happening more slowly in eastern
European countries.
 As a consequence, the absolute incidence of SCD and SCA is decreasing.
 SCD and SCA have different operational definitions, but are both manifestations of premature
death.
 The full epidemiological picture includes data from many different sources. Surveillance of
multiple sources is therefore needed to supplement death certificates and autopsy data.
 The rate of survival after sudden cardiac arrest is improving slowly.
 National and international registries of SCD and SCA are essential for epidemiology, bench-
marking and quality management at the European level.

Summary

Epidemiological investigations are a necessary and valuable addition in the field of resuscitation
research, but reliable epidemiological data on cardiac arrest are difficult to obtain. This is partly
because such data are collected for divergent purposes. Firstly, analysing the incidence and outcome of
cardiac arrest in a community requires identifying all events meeting the definition in a well-defined
population and following them to a defined end point. This means collecting standardized data for a
complete, well-defined communityde.g., all cardiac arrest events occurring, attended/not attended by
EMS, outside/inside hospital. Secondly, analysing the resuscitation process requires detailed
description of the quality and sequence of interventions affecting outcomes in a well-defined popu-
lation. This means detailed recording of times, methods and tools in identical patient populations
during identical disease episodesde.g., in a population served by an EMS system, all EMS-attended
cardiac arrests of presumed cardiac cause presenting with VF. Understandably, meeting these two
objectives is only possible in a few regions, since high-quality data collection, quality control and
analysis are needed.
Initial European Registry of Cardiac Arrest (EuReCa) analyses have revealed sometimes substantial
national and regional differences in the incidence of lay resuscitation and the start of resuscitation. The
registry is providing fresh insights into systematic and organizational aspects of the problem, which
can be discussed internationally to provide feedback to national registries. EuReCa is thus already
creating added value for the organizations participating in it, with the ultimate goal of optimizing
treatment and achieving better resuscitation results and outcomes for the individual patients.
J.-T. Gräsner, L. Bossaert / Best Practice & Research Clinical Anaesthesiology 27 (2013) 293–306 305

Conflict of interest

No conflict.

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