The Descriptive Epidemiology of

Cerebral Palsy
Nigel Paneth, MD, MPH
a,b,
T
, Ting Hong, MD, MSc
a
,
Steven Korzeniewski, MSc
a
a
Department of Epidemiology, College of Human Medicine, B 636 West Fee Hall,
Michigan State University, East Lansing, MI 48823, USA
b
Department of Pediatrics and Human Development, College of Human Medicine,
B 636 West Fee Hall, Michigan State University, East Lansing, MI 48823, USA
Methodologic issues in ascertaining the frequency of cerebral palsy
The first question that epidemiologists ask about a disease is How much?.
Before resources can be allocated toward the prevention or control of any disease
or health condition, it is essential to weigh the importance of a disease in the
context of competing public health priorities. The importance that is assigned to
CP is a function of its severity; the consequent burden that it places on affected
children, their families, and societies; and of its high frequency as a cause of
activity limitation in childhood. This article reviews the evidence about the
frequency of CP, how this frequency varies in different places, and whether CP is
becoming more or less prevalent.
Measuring the frequency of a disease in a population is not an easy task. We
have no good ongoing count of the frequency of cardiovascular disease (CVD),
even though it is the major cause of death and disability in the western world.
The difficulty of accurately counting the variety of manifestations of incident
CVD (eg, sudden death, onset of angina, heart attack, abnormal angiogram)
0095-5108/06/$ see front matter D 2006 Elsevier Inc. All rights reserved.
doi:10.1016/j.clp.2006.03.011 perinatology.theclinics.com
This work was supported by the Training Program in Perinatal Epidemiology at Michigan State
University, Grant No.1 T32 HD046477-01A1 from the National Institutes of Health, and United
Cerebral Palsy Grant No. R-735-02.
T Corresponding author. Department of Epidemiology, College of Human Medicine, B 636 West
Fee Hall, Michigan State University, East Lansing, MI 48823.
E-mail address: paneth@msu.edu (N. Paneth).
Clin Perinatol 33 (2006) 251267
requires epidemiologists to default to mortality data to monitor CVD time trends
in most populations.
Counting cases of disease in a population requires having a good operational
case definition, sound sources of information about cases, and a system for
collecting and systematizing that information. At the same time, the population at
risk for the disease in question must be enumerated accurately. Fortunately,
because CP is such an important cause of childhood disability, and because its
close links to pregnancy and the perinatal period have suggested to many
investigators that its frequency may reflect perinatal care, efforts to measure its
frequency in populations are ongoing in several parts of the world.
Case definitions in cerebral palsy
CP is a clinical diagnosis; no laboratory test or tissue histology defines its
presence or absence. In addition, despite the usefulness of CT and MRI scanning,
no single neuroimaging pattern or group of patterns fully encompass the diag-
nostic findings that are possible in CP. In fact, some children who have CP have
normal brain imaging findings. Diagnostic language to describe CP has been
developed by many authorities, most recently by the International Committee on
Cerebral Palsy Classification [1]; however, all clinical diagnoses are subject to
some degree of observer variability, no matter how carefully a clinical entity is
defined. Unless a single highly skilled observer diagnoses all cases of CP in a
populationclearly an impossible taskpopulation counts of CP must rely on
existing clinical records. It has been shown that with enough information, espe-
cially if that information includes aspects of motor functioning and not just motor
examination findings, experienced clinicians can classify children reliably based
on medical records [2].
Some degree of motor dysfunction is essential to the concept of CP. The
skilled child neurologist may detect Achilles tendon hyperreflexia and slight
hypertonia in some young children who have clumsiness but no real impairment
of motor functioning. But should such children be referred to as having CP? This
argument is not easy to settle, but from a public health perspective, the decision is
clear. Such cases do not carry the personal, familial, and social burden that we
associate with CP, and, moreover, are unlikely to be recorded as having CP using
the usual methods that are available for population enumeration. Therefore,
although it can be accepted that CP can exist in a nearly subclinical state, subject
to diagnosis by skilled and experienced clinicians, it is not useful for public
health action to include such cases in the CP rubric. The CP that is described in
this article, and which is recorded in CP registries, is disabling CP (ie, CP with
enough motor disability to interfere clearly with ordinary tasks, such as walking,
running, jumping or climbing stairs). The useful Gross Motor Function Clas-
sification Scale [3,4] would classify all children who have disabling CP at level 2
or above.
At some point in the future, perhaps through further advances in neuro-
imaging, we may learn that such mild cases share features in common with CP as
paneth et al 252
conventionally understood, and that expanding the definition of CP to include
such children will lead to advances in understanding etiology, analogously to the
way in which the concept of asymptomatic infection has clarified much about
infectious disease epidemiology. But we are not there yet.
Age at diagnosis is also important to case definition. A well-known phe-
nomenon in child neurology is that some signs that appear to be surprisingly
severe, including hypotonia and hypertonia, can be seen in infants, but disappear
with age. Such findings are especially common in very premature infants. For this
reason, the diagnosis of CP should not be made before the age of 24 months,
unless the child has an unusually severe case or other supporting information
(eg, severe neuroimaging abnormalities) is available.
Typology
An issue that is subsidiary to the subject of case definition is whether the
different subtypes of CP also can be enumerated well. It is likely that some
subtypes of CP come to clinical attention more readily than do others. A mild
hemiplegia in which age of walking is not delayed may be missed in population
counts, as will some cases of spastic diplegia. At the same time, severe spastic
quadriplegia or dramatic choreoathetosis is unlikely to be missed. Thus, the
distribution of subtypes of CP in any population study may provide clues to the
thoroughness with which CP is being ascertained in a population. A higher than
average proportion of quadriplegia may signal a passive reporting system.
What is the appropriate denominator population for reporting the frequency of
cerebral palsy?
A fundamental concept in epidemiology is that all measures of disease fre-
quency in a population should, to the extent possible
1
, be denominatored to the
population that is actually at risk for acquiring the disease. For example, prostate
and uterine disorders are denominatored to men and women, respectively, and not
to the entire population. CP is a disease that can be acquired only once in a
lifetime, and then only during a specific period of risk (ie, from early in preg-
nancy until about age 1 or 2 years). Because newborns and infants constitutes the
only population at risk, it makes sense to use the birth cohort from whence the
case arose as the denominator, and this is the common, although not universal,
practice in CP registries.
If a prevalence survey of all 5- to 10-year-old children who have CP is per-
formed in a community, using the total number of 5- to 10-year-old children in
the community as the denominator population seems to be a reasonable choice. It
1
In disease rates that are denominatored to populations enumerated in censuses, it surely happens
that some cases of disease did not arise from the enumerated population because of inmigration of
people with disease, and vice versa; however, the error that is introduced is generally small.
descriptive epidemiology of cp 253
must be remembered that 5- to 10-year-old children are, by definition, at zero risk
for developing CP (brain damage to head injury in a child of that age will not be
termed CP). Moreover, using school-age children as the denominator risks caus-
ing confusion, because family patterns of movement across geographic bound-
aries may be related to having a child with a disability. If a region is rich in health
care facilities and schools that are known to accommodate children with dis-
abilities, families with CP may migrate to it preferentially. Conversely, having a
child who has CP may preclude some movement by families from one region
to another.
An illustration of this point can be seen in two CP surveys that were made
during roughly the same period of time by the Metropolitan Atlanta CP
Surveillance Program. Each reported a different prevalence of CP. When live
births were used as the denominator, the prevalence of CP ranged from 1.7 to
2.0 per 1000 live births between 1975 and 1991 [5]. But when 5-year-old
children in Atlanta were used as the denominator, CP prevalence was reported as
3.1 to 3.6 per 1000 between 1996 and 2000 [6]. It is unlikely that the higher
figure represents an increase in CP over time. Comparison with population-based
data from other Western countries (Table 1) indicates that the second figure is the
outlier. Therefore, it seems likely that families with children who have CP move
to Atlanta for services, which inflates the numerator when place of birth is
ignored. Such children have emerged from birth cohorts outside of Atlanta, and
should be denominatored to the populations in which they were born.
Should the denominator be live births or survivors?
Consistent with the view that the population at risk should be the denominator,
it might be argued that survivors of the neonatal period are a better denominator
than are live births, because deaths are not at risk for CP. When neonatal mortality
is low (currently b5/1000 in the United States [7]), the difference to too small to
matter; however, for VLBW infants (1500 g at birth), the difference between
CP rates per live births and per neonatal survivors is substantial. When survival
rates are improving rapidly, as they have been in the United States for the past
30 years, the public health is better served by examining CP rates per live births
in VLBW infants. This is the only way to obtain a sense of the net contribution of
improving survival to the prevalence of CP in the population. Rarely, CP in
VLBW infants has been reported per 1000 total live births of all weights [8]. This
figure gives a sense of the net contribution of VLBW births to total CP preva-
lence, but does not represent the risk accurately.
Incidence or prevalence?
When a cohort of births is under effective surveillance, and the appropriate
diagnostic information is sought at regular intervals, one is in a position to
describe the cumulative incidence of a disease within the cohort. A registry
system, by contrast, inevitably produces cross-sectional informationthe num-
paneth et al 254
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descriptive epidemiology of cp 255
ber of cases in existence at the time of ascertainmenta figure that is referred
to as prevalence. Some epidemiologists would argue that even a figure that
is based on follow-up of a birth cohort is best viewed as a prevalence rate,
because all disease estimates that are denominatored to live births are prevalence
figures. The logic is that incidence requires a specific time period in which cases
emerge, and cases/live births do not carry the concept of time as does true
incidence, or cases/unit time. Conversely, birth rates vary over time, and the
number of cases of CP in the community must vary as birth rates go up and
down, even if the prevalence of CP per live births is unchanging. The number of
new cases of CP in the population is thus a function of the birth rate. However,
the proportion of births that develop CP a prevalence rate is the figure of
greatest importance both for public health and clinical medicine.
Longitudinal assessment versus a registry approach
Assessing the frequency of CP in the general population through periodic
longitudinal assessment of all births is unrealistic, and has been reserved his-
torically for special populations, such as low birth weight infants. In such infants,
the high prevalence of CP justifies the resources that are needed to use the
specialized trained personnel that are required to make the diagnosis of CP in
timely fashion. The National Collaborative Perinatal Project (NCPP) was the only
effort in which longitudinal assessment of a mostly unselected (although not
population-based) and large ( N40,000 children) cohort of births was followed
and assessed through early childhood [9].
The practical approach to estimating the frequency of CP, and the only one in
current use, is to ascertain all cases of CP that are known to service providers in
an enumerated population. When population surveillance of CP is ongoing, it is
common practice to assemble a registry that continuously records all cases of CP
known in a region. The ongoing surveillance of CP that is performed in
metropolitan Atlanta (see Table 3) is the closest approximation to a CP registry in
the United States but is actually an intermittent population survey program.
The registry approach requires intensive surveillance of all locations in which
children who have CP might be seen, such as in the clinics of primary care prac-
titioners, neurologists, and physiotherapists, and increasingly, in the school sys-
tem. A particular difficulty that is faced by such efforts is that sufficient
identifying information must be collected about each case so that the inevitable
duplicate reports can be consolidated to avoid overcounting. A second difficulty
is that reliance on service providers means that the registry data are only as
good as the diagnostic acumen of the overall pool of providers in the region.
Although case notes can be perused by experts, who can (if the records are com-
plete enough) confirm or deny caseness, the system will miss cases that are not
ascertained yet by service providers.
Two kinds of cases of CP are likely to be missed by registries. Some milder
cases of CP (even those with real disability) may not be included in registries
because they may not be diagnosed in the community. At the other end of the
paneth et al 256
severity spectrum, infants who have severe CP may die before their CP is
diagnosed formally, and may be missed by registry data collection. In the NCPP,
children who were described as neurologically abnormal at age 12 months had
a 50% risk for having CP at age seven, if they survived to that age. But 15% of
these children died before their seventh birthday and probably would not have
been enumerated in a population registry [10].
For all of the above reasons, the cumulative incidence of CP based on serial
examinations of a cohort will always be higher than the prevalence of CP as-
certained through registry work. The prevalence of CP in most registry studies
(see Table 1)about 2 per 1000 live birthsis about 25% lower than the NCPP
prevalence of 2.6 cases per 1000 live births that was found from longitudinal
assessment of that large cohort [9].
It is important to keep in mind that registry data may be delayed. In the
community, even moderately severe cases may be included years after their
diagnosis could have been made by expert observers. For this reason, the preva-
lence of CP from registries should be viewed with caution in children who are
under the age of five [11].
The registry work that is needed to count CP only can be performed in
societies in which concerns about privacy generally are outweighed, in the
public mood, by the potential value of such enumeration. Registries also are
facilitated greatly by having a common identifying number that is used in all
health care settings. Not surprisingly, the European, and especially the Scan-
dinavian countries, have been leaders in counting CP, whereas the United States
has lagged behind.
Registries of cerebral palsy around the world
Lasts [12] dictionary of epidemiology defines a registry as a file of informa-
tion concerning all cases of a particular disease in a defined population such that
the cases can be related to a population base. Registries of CP are important
because they facilitate population-based studies, whose epidemiologic findings
are more secure than those that are based on convenience samples [13].
Table 2 provides a list of all CP registries that the authors could find that have
published data in the peer-reviewed literature, with contact information where
possible. Many CP registries emerged in Europe during the 1970s; this de-
velopment was prompted, in part, by advances in neonatal care that led to
increased attention to population trends in developmental disabilities, and espe-
cially CP, whose prevalence might be expected to change in light of improve-
ments in perinatal care. The pioneer CP registry, in Gothenburg, Sweden, was
developed by Bengt and Gudrun Hagberg and has reported continuously on CP
since the 1950s [14].
Recently, 14 registries from eight European countries formed a network,
Surveillance of Cerebral Palsy in Europe (SCPE). This pooling of data from
several registries has facilitated interesting and useful epidemiologic investiga-
descriptive epidemiology of cp 257
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tions of CP [15]. Funded by the European Commission, the network monitors
trends in the CP prevalence rate, and provides a basis for collaborative research
and service planning. The SCPE has provided new information concerning the
impact of interregistry methodological variance on prevalence reports. Results of
a workgroup that was intended to harmonize data collection methods revealed
differences in overall CP rates, and particularly large differences among birth
weightspecific rates, across the registries. These differences were related to
variation in the definition of CP that was used, case ascertainment strategies, age
of inclusion, and the classification of subtypes. Consensus on these issues now
allows for valid interregistry comparisons among SCPE participants, and high-
lights the need for an internationally accepted classification schema for CP [1].
The Metropolitan Atlanta Surveillance Program for Developmental Disabili-
ties is the only study in the United States that is registry-like, but there have been
gaps in its coverage since it began in 1975. Two large cross-sectional population-
based surveys have been performed in the United States: in northern California
and by extracting data from the National Health Examination Survey (Table 3).
Geographic variation in cerebral palsy prevalence
The authors reviewed 50 reports of CP prevalence rates from many regions in
the world published in the past 20 years and covering cohorts that were born
since the 1950s. Reports that are based on registries are summarized in Table 1,
whereas reports from intermittent surveillance efforts or cross-sectional surveys
are listed in Table 3. The tables consolidate reports from the same registry
published as separate installments over time. All reports are from developed
countries in Europe, North America, or Asia, and it is not possible to draw
conclusions about the prevalence of CP in less developed nations. Registries
tend to use live births as the denominator, or, less commonly, neonatal or
infant survivors. Cross-sectional surveys often use childhood populations as
the denominator.
CP prevalence is remarkably similar in developed countries. Nineteen of the
27 reports show prevalences between 1.5 and 2.5 per 1000 live births or child
survivors, and all studies show prevalences between 1.2 and 3.0 per 1000 live
births. There is no suggestion of a systematic difference in prevalence in any
geographic location. The cross-sectional surveys (see Table 3) produce virtually
identical figures. The generalization that each 1000 births generally produces
two children with CP, or that about 1 in every 500 children has CP, is a good
approximation of the truth.
Time trends in cerebral palsy prevalence
The change in perinatal care over the past 30 years or so has been expected to
have an impact on the prevalence of CP. One perspective posits that better
descriptive epidemiology of cp 261
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paneth et al 262
management of maternal complications, more intensive surveillance of fetuses in
labor, and improved ventilatory management of premature newborns should be
reflected in fewer cases of CP. An alternative perspective suggests that these
improvements have been translated into much better neonatal survival, especially
in very premature infants, and the price of increased survival is a larger number of
children who have CP [48].
In an attempt to answer these questions, the authors have plotted CP preva-
lence per 1000 live births (or in a few cases, per 1000 survivors or children) using
bubble charts that plot each study according to its size, and weight the study
accordingly. The center of each bubble corresponds to the prevalence point-
estimate, and bubble size is proportional to the size of the denominator popu-
lation. A spline smoothing line was fitted to each figure to more easily visualize
the secular trend.
For CP at all birth weights (Fig. 1), the overall impression is stability over
time, but with a slight increase in prevalence in the 1980s. There is a sugges-
tion that this increase may be on the decline. CP prevalence per 1000 live-
born infants who weigh less than 1500 g exhibited a sharp increase in the 1980s
which seems to be on the decline (Fig. 2). A similar, but slightly less pro-
nounced, trend was found for infants who weigh between 1500 g and 2499 g
(data not shown). Finally, the time trend for infants who weigh more than
2500 g (Fig. 3) shows an up-and-down pattern with no obvious trend. It is
Fig. 1. Trend of cerebral palsy at all birth weights.
descriptive epidemiology of cp 263
Fig. 2. Birth weightspecific cerebral palsy prevalence (birth weight b1500 g).
Fig. 3. Birth weightspecific cerebral palsy prevalence (birth weight 2500 g).
paneth et al 264
likely that the variations in the low rates of CP that are seen in normal weight
infantsabout 1 per 1000 live birthsare simply sample variance, and that
there is no real change in their CP prevalence. It also is apparent that the slight
increase in CP prevalence that is seen in all infants reflects the increase in CP
in VLBW infants, which is entirely a consequence of their increasing survival.
The decline in CP in such infants recently may reflect improvements in care
of VLBW infants that are beginning to affect rates of CP or it simply may be
sample variance. Only time will tell.
Summary
CP is enumerated regularly in several parts of the world, and its prevalence
ranges from 1.5 to 2.5 per 1000 live births. There is no suggestion of any major
difference in prevalence among western nations, although data from the Americas
are sparse. Time trends in overall CP prevalence for the past 40 years are most
notable for their stability, but a modest increase in prevalence probably occurred
in the last decades of the twentieth century. This increase in prevalence can be
attributed to the substantial increase in the prevalence of CP per 1000 VLBW
infants, which, in turn, is attributable to their increased survival that results from
newborn intensive care. There are signs that this recent increase in prevalence of
CP in VLBW infants may have leveled off and may be on the decline.
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