9.1.1. Foetal, neonatal and infant mortality and morbidity
9.1.1.1.
Introduction
The principal determinants of foetal and neonatal death in
Europe today include congenital anomalies, very preterm birth, and stillbirths
associated with foetal growth restriction (De Galan-Roosen et al, 1998;
Glinianaia et al, 2000; Holt et al, 2000; De Reu et al, 2000). Preterm birth
and low birth weight are important risk factors for
morbidity in infancy and childhood. Data are available in international
reporting systems on rates of death in the perinatal period, the causes of
infant deaths and on the percentage of low birth weight
babies. Other topics covered by the EURO-PERISTAT indicators on morbidity,
including the preterm birth rate, the APGAR score (Apgar, 1953) and hypoxic
ischemic encephalopathy (HIE) are not currently available in international
reporting systems.
Foetal and neonatal mortality have declined dramatically
in the past decades, but large disparities still exist among EU Member States.
Table 9.1.1.1 provides definitions and some methodological caveats to take into
consideration when comparing these rates between countries and over time.
Table 9.1.1.1. Definitions of foetal, neonatal
and infant mortality and points to consider when comparing rates between
countries.
Table 9.1.1.2. Births, deaths and rates of foetal, neonatal and
infant mortality in selected EUGLOREH countries
9.1.1.2. Data sources
9.1.1.2.
Information Sources
International comparisons of data relating to pregnancy
outcome and maternity care date back at least to the mid-nineteenth century (Le
Fort, 1866; US Center for Disease Control, 1992; Semenow, 1872). In the
twentieth century, the post-war focus on maternal and child health programmes
in many countries furthered the development and use of perinatal health
indicators. Today, perinatal, infant and maternal mortality rates are among the
most commonly used indicators of population health status. These rates, derived
from civil and medical registers of births and deaths, are published regularly
and historical series exist for many countries.
There are limits to the available perinatal health data,
however. As perinatal and maternal health have improved, absolute differences
in mortality rates between countries have declined and other measures of health
status have become increasingly necessary. Despite this need for information,
there are no comparative data available on the principal morbidities affecting
pregnant women and their newborns. Furthermore, the methodological shortcomings
of many indicators, whether mortality or other measures of health status, have
generated scepticism about the data sources, the derivation of the numbers, and
their usefulness in comparing health status and quality of care (Macfarlane and
Chalmers, 1981; Garne, 2001; Kramer et al, 2002).
To address these limitations, the EURO-PERISTAT project
was charged with developing an indicator set for monitoring and describing
perinatal health in Europe. The EURO-PERISTAT indicators, listed in Table 1,
were developed after an extensive review of existing perinatal health
indicators using a DELPHI consensus process with scientific committees composed
of clinicians, epidemiologists and statisticians from all European member
states and Norway (Zeitlin et al, 2003). The resulting
EURO-PERISTAT indicator set reflects a solid base of scientific evidence, as
well as the consensus of epidemiologists, clinicians and data providers across Europe.
The EURO-PERISTAT indicators are grouped into four themes:
fetal, neonatal and child health; maternal health; population characteristics
and risk factors; and health services. Core indicators are defined as those
essential to monitoring perinatal health, recommended indicators are those
considered desirable for a more complete picture of perinatal health across the
member states, and indicators for further development represent important
aspects of perinatal health, but require additional work before they can be
operationalised in the member states.
Table 9.1.1.2.1. EURO-PERISTAT Indicators by
category; Data on indicators in bold italics are available in international
routine databases such as EUROSTAT, WHO, OECD or European networks of
condition-specific registers.
(C=core, R=recommended, F=for further development)
|
Neonatal health
|
|
C:
Fetal mortality rate
by gestational age, birth weight,
plurality
|
|
C: Neonatal mortality rate by gestational age, birth
weight, plurality
|
|
C: Infant mortality rate by gestational age, birth
weight, plurality
|
|
C: birth weight distribution by vital status,
gestational age, plurality
|
|
C: Gestational age distribution
by vital status, plurality
|
|
R: Prevalence of selected congenital anomalies
|
|
R: Distribution of APGAR score at 5 minutes
|
|
F: Causes of perinatal death/deaths due to congenital anomalies
|
|
F: Prevalence of cerebral palsy
|
|
F: Prevalence of hypoxic-ischemic encephalopathy
|
|
F:
Prevalence of late induced abortions
|
|
F: Severe
neonatal morbidity among babies at high risk
|
|
F: Neonatal
screening policies
|
|
Maternal health
|
|
C:
Maternal mortality ratio by age, mode of delivery
|
|
R: Maternal mortality by cause of death
|
|
R: Prevalence of severe maternal morbidity
|
|
F: Prevalence of trauma to the perineum
|
|
F: Prevalence of faecal incontinence
|
|
F: Postpartum depression
|
|
Population characteristics/Risk factors
|
|
C: Multiple birth rate by number
of fetuses
|
|
C: Distribution of maternal age
|
|
C: Distribution of parity
|
|
R: Percentage of women who smoke during pregnancy
|
|
R: Distribution of mothers’ education
|
|
F: Distribution of mothers' country of origin
|
|
Health care services
|
|
C: Distribution of births by mode of delivery by parity, plurality, presentation, prev. Caesarean
|
|
R: Percentage of all pregnancies following fertility treatment
|
|
R: Distribution of timing of 1st antenatal visit
|
|
R: Distribution of births by mode of onset of labour
|
|
R: Distribution of place of birth
|
|
R: Percentage of infants breast-feeding at birth
|
|
F: Indicator of support to women
|
|
F: Indicator of maternal satisfaction
|
|
F: Births attended by midwives
|
|
F: Births without medical intervention
|
The indicators that were developed by EURO-PERISTAT are
not yet reported routinely in Europe. However, data from existing international
health databases are available on many of them, although they do not always
follow the exact definitions specified by EURO-PERISTAT. These data systems
include EUROSTAT, WHO and OECD, as well as international networks of data
registers such as SCPE (European Cerebral Palsy Network) and ESHRE (European
Society for Human Reproduction and Embryology). Table 9. 1. 1. 2. 1 indicates
in bold italics the indictors for which at least some data are available in
these sources. Illustrations from the EURO-PERISTAT feasibility studies and
other published data are presented here to show how these indicators, once they
are part of a routine reporting system in Europe, will enrich our understanding
of key issues in perinatal health.
9.1.1.3. Data
presentation and analysis
Table 9.1.1.2 provides rates of foetal, neonatal and
infant mortality for 2005 or most recent available year using EUROSTAT data,
while Figures 9.1.1.1 and 9.1.1.2 show the evolution of neonatal and foetal
mortality over the past 30 years.
Neonatal mortality
As shown in Figure 9.1.1.1, there has been a significant
decline in the rate of neonatal mortality in the last thirty years. In 1975,
neonatal mortality rates ranged from 6.4 to 22.1 per 1 000 total births in the
current EU Member States. By 2004, they ranged from 1.6 to 9.5 per 1 000
births. Neonatal mortality rates are about 2 per 1 000 births in Sweden, Luxembourg, Czech Republic, Norway and Finland, but over 5 per 1 000 in Bulgaria, Latvia and Romania. There are differences in rates of neonatal mortality between
countries based on their year of accession to the European Union. Among EU15
Member States and Norway, the median rate of neonatal mortality in 2004 was 2.7
per 1 000 births. This median rate was much higher (4.4/1 000) among countries that
joined the EU in 2004 (Czech Republic, Cyprus, Estonia, Hungary, Latvia, Lithuania, Malta, Poland, Slovenia, and Slovak Republic), and was more than three times greater (8.5/1 000) among countries that acceded in
2007 (Bulgaria and Romania).
Figure
9.1.1.1. Trends in neonatal mortality rates
Foetal mortality
As Figure 9.1.1.2 illustrates, foetal mortality has also
decreased, but less markedly. Measuring foetal mortality is more complicated
than neonatal mortality, as explained in Table 9.1.1.1. In addition, data
systems are undoubtedly better at registering these deaths today, which may
mask a greater downward trend. Using 2004 data, there was no difference in the
median rate of foetal mortality (3.9 per 1 000 births) between the original
members of the EU and those who joined in 2004. The median rate of foetal
mortality among countries that acceded in 2007, however, was higher at 6.9 per
1 000 births.
Figure
9.1.1.2. Trends in foetal mortality rates
Infant mortality and its causes
Data on the causes of infant deaths are available in
international databases. Unfortunately, all of the causes associated to
conditions originating from the perinatal period are grouped together, whilst
there is no available information on the specific causes of perinatal deaths.
Nonetheless, these data show that a large proportion of infant deaths – i.e.
nearly three-quarters - are due to conditions originating in the perinatal
period, mainly prematurity and congenital anomalies. Data on congenital
anomalies are presented elsewhere in this volume and are not reproduced here
(see below). The remaining 25% of deaths are due, in part, to infectious
diseases and accidental deaths which are largely preventable. Among the EU
Member States, the highest rates of these other causes are reported for Bulgaria (48%), Romania and Cyprus1 (40%) and Estonia (36%). These data also illustrate that
as the rate of infant mortality declines, perinatal causes are responsible for
a greater proportion of deaths in the first year of life.
Table 9.1.1.3. Infant mortality by
cause in selected EUGLOREH countries in 2005 or most recent year
See Chapter 9.1.2 for a detailed and specific treatment of
congenital malformations.
Figure 9.1.1.3 presents rates of low birth
weight in the EU. Between 4 and 9% of all live births have a birth
weight less than 2500 grams. These babies include those that are
preterm, with normal or low birth weights and babies born
at term with growth restriction; all these groups are at a higher risk of
having longer-term impairments in childhood than term babies with normal birth
weight.
Figure
9.1.1.3. Percentage of live births with a birth weight
less than 2500 g, most recent data available
Data on preterm babies are not currently reported
routinely, but this information is very important for evaluating perinatal
health outcomes. Very preterm babies have the highest rates of long-term health
problems, including cerebral palsy, severe learning disabilities, chronic lung
disease, visual and hearing impairments and poor growth. However, even babies
born between 33 and 35 weeks of gestation, often termed mildly or moderately
preterm births, have higher mortality and are more likely than others to have
motor and learning difficulties than term babies (Escobar et al, 2006; Kramer
et al, 2000a; Marret et al, 2007). The preterm birth rate has increased in many
countries over the past decade (Langhoff-Ross et al, 2006); these trends, which
cannot be monitored using currently reported indicators, are essential for
monitoring the health of babies in the EU. The EURO-PERISTAT feasibility study
showed that these data are available in most European countries.
Cerebral Palsy (CP) is the most common disabling condition
in childhood, occurring in 1.5 to 2.5 per 1 000 live births. Cerebral Palsy is
a group of permanent disorders of movement and/or posture that result from a
non-progressive interference, lesion, or abnormality of the developing/immature
brain (DMCN, 2000).
Challenges in Monitoring
CP is a recommended indicator by EURO-PERISTAT for
long-term childhood health impairments because of its association with adverse
perinatal events. CP is an umbrella term and difficulties can arise from
variation in case definition and in the inclusion and exclusion criteria used
by surveys and registers. To overcome these difficulties, a collaborative
network on cerebral palsy surveys and registers, SCPE (Surveillance of Cerebral
Palsy in Europe), was formed within Europe with the aim of monitoring trends in
CP rates and providing a framework for collaborative research (SCPE, 2000).
Data presented here concern children with CP born 1990-1998, ascertained at 4-5
years of age using a common SCPE definition and the same inclusion/exclusion
criteria.
Rate in Europe
The overall rate of cerebral palsy, excluding
post-neonatal CP cases acquired during 1990-1998 in 10 European countries, is 2.0 per 1 000 live births. As shown in Table 9.1.1.4, this rate
varies between countries from 1.6 or 1.7 (Portugal, Spain, France and Norway) to 2.3 (United Kingdom).
Table
9.1.1.4. Cerebral palsy rates per 1 000 live births in selected EUGLOREH countries,
birth cohorts 1990-1998
Among children with CP, some have a severe clinical
presentation and are unable to walk or have moderate to severe intellectual
impairment. Other children have a mild clinical CP type, i.e. they walk without
aids and they have normal cognition or only mild intellectual impairment. As
shown in Table 9.1.1.5, these proportions vary greatly between countries, with
fewer mild cases in registers from the Southern part of Europe than in
registers from the Northern part of Europe. Although it varies between
countries, there is little change over time in this rate of CP.
Table 9.1.1.5. Proportion of severe and mild
cerebral palsy cases, born 1990-1998, in selected EUGLOREH countries
Very Low birth weight (VLBW) is
defined as a weight at birth below 1500g. VLBW rate among live births is not
rare; it has increased during the last decades and is now around 1% in
different European countries. It is well known that the risk of developing CP
is 60 to 100 times higher in VLBW babies/very preterm than in normal birth
weight/term babies. The CP rate among VLBW children born in the
covered area of 9 different European countries is, on average, 94 per 1 000
live births during the period 1990-1998. As shown in Table 9.1.1.6, this rate
varies per country from 26 per 1 000 live births (Lithuania) up to 164 per 1
000 live births (Ireland). This variation depends greatly on the rate of
neonatal mortality among children born VLBW, which varies from 17% to 52% in
the different countries. The overall rate of CP in VLBW has been decreasing
over time, at least until 1996 birth cohort, and mainly in the group of
children born 1000-1499g (Platt et al, 2007).
Table 9.1.1.6. CP rates among VLBW babies
in 9 European countries, birth cohorts 1990-1998
Population characteristics and risk factors
In order to monitor perinatal health trends and understand
the differences observed between countries, it is necessary to have information
about the characteristics of childbearing women and the risk factors associated
with poor outcomes. For a synthesis of available knowledge see Table 9.1 and
the section on maternal health.
HealthCare
Healthcare of mothers and their conceived during
pregnancy, delivery and postpartum have developed differently in EU Member
States. See Chapter 9.3.2 for more information.
While greatly reduced, deaths and illness associated with
childbearing remain a priority for surveillance in Europe, there are compelling
reasons to improve national and European health information systems in order to
monitor health practices and policies.
First of all, the data presented in this chapter reveal
significant geographic inequalities in mortality in the perinatal period
between the countries in Europe, suggesting that further gains are possible and
necessary. For instance, if every country had the neonatal mortality rate of
those countries with the lowest rates, the number of neonatal deaths every year
would be halved. Better data on preterm births and neonatal morbidities would
make it possible to better understand the reasons and consequences of these
differences.
It is increasingly understood that a healthy pregnancy and
infancy reduce the risk of common adult illnesses, such as hypertension and
diabetes. This life-course approach to our health begins at conception – or
perhaps before – and suggests that a better management of the major morbidities
associated with pregnancy, such as intrauterine growth restriction or preterm
birth– may reap large dividends in overall population health.
Further information regarding reproduction issues is
presented in Chapter 9.3.2
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9.1.1.5. Acronyms
