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ABSTRACT
BACKGROUND. Children with cerebral palsy frequently grow poorly. The purpose of
this study was to describe observed growth patterns and their relationship to
health and social participation in a representative sample of children with moderate-severe cerebral palsy.
METHODS. In a 6-site, multicentered, region-based cross-sectional study, multiple
sources were used to identify children with moderate or severe cerebral palsy.
There were 273 children enrolled, 58% male, 71% white, with Gross Motor
Function Classification System levels III (22%), IV (25%), or V (53%). Anthropometric measures included: weight, knee height, upper arm length, midupper
arm muscle area, triceps skinfold, and subscapular skinfold. Intraobserver and
interobserver reliability was established. Health care use (days in bed, days in
hospital, and visits to doctor or emergency department) and social participation
(days missed of school or of usual activities for child and family) over the preceding
4 weeks were measured by questionnaire. Growth curves were developed and z
scores calculated for each of the 6 measures. Cluster analysis methodology was
then used to create 3 distinct groups of subjects based on average z scores across
the 6 measures chosen to provide an overview of growth.
RESULTS. Gender-specific growth curves with 10th, 25th, 50th, 75th, and 90th per-
centiles for each of the 6 measurements were created. Cluster analyses identified
3 clusters of subjects based on their average z scores for these measures. The
subjects with the best growth had fewest days of health care use and fewest days
of social participation missed, and the subjects with the worst growth had the most
days of health care use and most days of participation missed.
CONCLUSIONS. Growth patterns in children with cerebral palsy were associated with
their overall health and social participation. The role of these cerebral palsyspecific growth curves in clinical decision-making will require further study.
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STEVENSON et al
www.pediatrics.org/cgi/doi/10.1542/
peds.2006-0298
doi:10.1542/peds.2006-0298
Key Words
cerebral palsy, health status, growth,
growth and nutrition, growth patterns
Abbreviations
CP cerebral palsy
NAGCPPNorth American Growth in
Cerebral Palsy Project
KH knee height
UAL upper arm length
SUBsubscapular skinfold thickness
TRItriceps skinfold thickness
AMAarm muscle area
GMFCSGross Motor Function
Classication System
CDCCenters for Disease Control and
Prevention
Accepted for publication Mar 31, 2006
Address correspondence to Richard D.
Stevenson, MD, Department of Pediatrics,
University of Virginia School of Medicine,
Kluge Childrens Rehabilitation Center and
Research Institute, 2270 Ivy Rd, Charlottesville,
VA 22903. E-mail: rds8z@virginia.edu
PEDIATRICS (ISSN Numbers: Print, 0031-4005;
Online, 1098-4275). Copyright 2006 by the
American Academy of Pediatrics
METHODS
The NAGCPP is a multicenter study designed to investigate growth, physical development, and nutritional status in children with CP according to an established protocol.4 The University of Virginia, Duke University, the
University of North Carolina, the Childrens Hospital of
Philadelphia, the University of Rochester, McMaster
University, and the University of British Columbia were
the participating sites, with Duke and University of
North Carolina operating as a single site.
Subjects
The details of subject identification, recruitment, and
enrollment were fully described previously.4 The subjects were a sample drawn from the 6 region-based sites,
using multiple sources for identification: clinic samples,
parent organizations, local United Cerebral Palsy Associations, school systems, public service announcements,
physical therapists, local physicians, equipment vendors,
and newspaper advertisements. Each of the sites defined
a geographical region with a population of 500 000
people. All of the children with CP5 between the ages of
2 and 18 years in each region were eligible for recruitment. All of the subjects of moderate or severe impairment defined by Gross Motor Function Classification
System levels III, IV, or V,6 who had clinically diagnosed
CP, were included. Medical history was reviewed. Chil-
dren with a history of genetic, metabolic, or neurodegenerative disease or other medical illnesses known to
influence growth were excluded. However, children
were not excluded on the basis of prematurity or low
birth weight. Informed consent was obtained from the
parent or legal guardian, and assent was obtained when
appropriate. The institutional review boards of each participating site approved the study.
Procedure
Subjects traveled to each study site to participate. At a
single observation, trained observers performed a detailed anthropometric assessment of each child using
standard techniques.1,7 Duplicate measures were obtained, and the average was used for analyses. Measures
included knee height (KH), upper arm length (UAL),
weight, midupper arm circumference, subscapular skinfold thickness (SUB), triceps skinfold thickness (TRI),
and calculated arm muscle area (AMA). Duplicate measures were also used to calculate intraobserver and interobserver reliability, and these are reported in Table 1.
Reliability was comparable with other published reports
in children with CP.1 Sexual maturity ratings (Tanner
stages) and severity of CP were determined after observers were trained for these assessments.8 We have reported previously on sexual maturity ratings in this population.9 Severity of CP was assessed using the Gross
Motor Function Classification System (GMFCS).6 The
GMFCS categorizes severity into 5 levels (I through V)
based on gross motor function, predominantly independent mobility. This study enrolled subjects who were
levels III, IV, and V, the more severe end of the spectrum. Older children who are level III can ambulate
independently with a walker (household ambulators)
but often use wheelchairs in the community; those at
level IV cannot walk independently but can achieve
independent mobility in a motorized wheelchair; and
those at level V have no independent mobility but,
rather, are transported.
Information regarding demographics, medical history, functional abilities, health care use, and social par-
Intraobserver
Error
(N 307)a
Weight
Arm circumference
UAL
KH
TRI
SUB
Interobserver Error
(N 18)
TE
CV
TE
CV
0.08
0.18
0.27
0.22
0.60
0.51
0.30
0.92
1.07
0.61
5.93
5.80
0.04
0.32
0.52
0.29
0.55
0.73
0.18
1.66
2.32
0.89
6.98
12.5
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STEVENSON et al
Age, y
Gender
Race
GMFCS level
Birth weight, g
Characteristic
Enrolled,
n (%)
25
612
1319
Male
Female
White
Black
Other
III
IV
V, no gastrostomy
V, with gastrostomy
1500
15002400
24013300
3300
25th
25th to 75th
75th
72 (26)
107 (39)
94 (34)
157 (58)
116 (42)
192 (70)
63 (23)
18 (7)
56 (23)
64 (25)
73 (29)
62 (24)
52 (24)
53 (24)
61 (28)
53 (24)
49 (26)
91 (47)
52 (27)
FIGURE 1
KH centiles for Boys with CP versus healthy boys. A, KHs and estimated centiles for boys
with CP (n 156). B, Estimated KH centiles for boys with CP () and healthy boys ().
KH estimates for the general population were based on converting the CDC height charts
using the formulas in Chumlea et al.19
FIGURE 2
KH centiles for girls with CP versus healthy girls. A, KHs and estimated centiles for girls
with CP (n 114). B, Estimated KH centiles for girls with CP () and healthy girls (). KH
estimates for the general population were based on converting the CDC height charts
using the formulas in Chumlea et al.19
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FIGURE 3
Weight centiles for boys with CP versus healthy boys. A, Weights and estimated centiles
for boys with CP (n 153). B, Estimated weight percentiles for boys with CP () and
healthy boys (). Weight centile estimates for the general population were based on the
CDC weight charts.16
STEVENSON et al
FIGURE 4
Weight centiles for girls with CP versus healthy girls. A, Weights and estimated centiles for
girls with CP (n 113). B, Estimated weight centiles for girls with CP () and healthy girls
(). Weight centile estimates for the general population were based on the CDC weight
charts.16
FIGURE 5
Cluster means and SEs of means from 3 clusters (n 254 subjects
observed on all 6 anthropometric measures).
FIGURE 6
Anthropometric clusters and health and participation
for children with CP. N 238 children with both anthropometric and outcomes data. There are n 82 children
in the Z smaller cluster (F), n 104 in the Z middle cluster () and n 52 children in the Z larger
cluster ().
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Z Small (n 82)
Variable
Doctor visits
Emergency department visits
Hospital overnight
Days in bed
School days missed
Child unable to do usual activities
Family unable to do usual activities
Z Large (n 52)
Mean
SE
Range
Mean
SE
Range
Mean
SE
Range
0.84
0.18
0.39
0.49
1.38
1.01
0.79
0.12
0.08
0.21
0.22
0.40
0.27
0.20
06
04
016
015
025
015
010
0.85
0.06
0.07
0.40
0.95
0.92
0.82
0.16
0.02
0.03
0.27
0.32
0.31
0.32
010
01
02
028
028
021
028
0.65
0.06
0.08
0.06
0.38
0.52
0.25
0.15
0.03
0.06
0.06
0.16
0.19
0.12
04
01
03
03
05
07
05
.35
.67
.22
.14
.08
.46
.11
Data are the number days over the previous 4 weeks. P values from Kruskal-Wallis test.
Z (Smaller),
n (%)
Z (Middle),
n (%)
Z (Larger),
n (%)
Total
III
IV
V no gastrostomy
V with gastrostomy
Total
9 (11)
21 (25)
37 (44)
17 (20)
84 (100)
29 (30)
21 (21)
22 (22)
26 (27)
95 (100)
17 (31)
15 (27)
11 (20)
12 (22)
55 (100)
55
57
70
55
237
Values displayed are number of subjects and column percentages. Numbers do not add to 254 because of missing values on GMFCS/feeding
tube status. 2 test 19.5; P .0001.
FIGURE 7
Estimated percentage of health care use and participation measures for (A) the Z small cluster relative to the Z cluster and (B) the Z cluster relative to the Z large clusters,
relative to the medium cluster. Values displayed are the estimates and 95% condence intervals based on the negative binomial regression model, adjusting for age, gender, and
GMFCS/feeding tube status.
STEVENSON et al
tions of acute and chronic malnutrition and growth hormone deficiency, we decided against the idea. We were
concerned that clinicians might use these growth curves
as prescriptive for the population. Therefore, we decided to embark on further analyses to link physical
growth to health and participation outcomes. There is
clear precedent for this notion in child health research,
most notably in research related to obesity and cystic
fibrosis.3133 In addition, research in adults supports a
relationship between underweight and excess mortality.34
To link physical growth with markers of health and
whether specific interventions that improve growth result in improved health and social participation. The
clinical goal is to optimize the health and well-being of
children with CP and their families through appropriate
management growth and nutrition.37
CONCLUSIONS
Children with moderate or severe CP have poor growth
compared with typical children. We developed growth
curves for children with moderate or severe CP and
correlated growth with markers of health and social
participation. Bigger children with CP had better health
and social participation than similar smaller children.
Further studies are needed to corroborate these findings
and to evaluate whether specific interventions can improve growth, as well as health and social participation.
Determining the potential role of these growth curves in
clinical decision-making will require further study.
ACKNOWLEDGMENTS
This study was conducted as part of the North American
Growth in Cerebral Palsy Project. It was supported by
the Kluge Research Fund and the Childrens Hospital
Committee of the University of Virginia, the Genentech
Foundation for Growth and Development, the National
Center for Medical Rehabilitation Research (grants 5 R01
HD35739-04, 1 F32 HD08615-01A1, 1 R24 HD39631-01,
and K24-HD041504-01), and the University of Virginia
General Clinical Research Center (M01RR00847). In addition, this study was supported by the University of
North Carolina General Clinical Research Center (M01
RR00046) and the National Institute of Arthritis, Musculoskeletal and Skin Diseases (K24 AR02132); the General Clinical Research Center (M01 RR00240) and the
Nutrition Center at the Childrens Hospital of Philadelphia; the Jones-Guerrero Fund at Duke University, the
Childrens Hospital Fund at the University of British
Columbia, and the General Clinical Research Center at
the University of Rochester (M01 RR00044).
We gratefully acknowledge the help and support of
the children and their families. We also give special
thanks to Vivienne Spauls, Jillian Bumler, Teresa Olsen,
and Candra Gerrick.
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2. Stevenson RD. Measurement of growth in children with developmental disabilities. Dev Med Child Neurol. 1996;38:
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3. Stevenson RD. Use of segmental measures to estimate stature
in children with cerebral palsy. Arch Pediatr Adolesc Med. 1995;
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4. Liptak GS, ODonnell M, Conaway M, et al. Health status of
children with moderate to severe cerebral palsy. Dev Med Child
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