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Received 7th May 2006; returned for revisions 1st July 2006; revised manuscript accepted 15th July 2006.
Objective: To describe the activities and participation of children with cerebral palsy
and to examine the relationship with personal factors and disease characteristics.
Design: Cross-sectional study.
Setting: Department of Rehabilitation Medicine of a University Medical Center in The
Netherlands.
Subjects: One hundred and ten children: 70 boys, 40 girls, mean (SD) age 11 years
and 3 months (20 months).
Outcome measures: Activities and participation, described in the domains of
mobility, self-care, domestic life, social life and communication, measured with the
Gross Motor Function Measure, the Pediatric Evaluation of Disability Inventory and
the Vineland Adaptive Behavior Scales.
Results: Multiple linear regression models showed that the Gross Motor Function
Classification System (GMFCS) was strongly associated with mobility (explained
variance 87 92%), self-care and domestic life. Apart from the GMFCS, cognitive
impairment and limb distribution were less important but also significantly associated
with self-care and domestic life (explained variance 65 81%). Cognitive impairment
and epilepsy were the most important factors associated with social life and
communication (explained variance 54 75%).
Conclusion: Activities and participation can, to a large extent, be explained by only a
few associated factors.
activities and participation.4,5 To describe func- 2) to analyse the relationship between activities
tioning, the International Classification of Func- and participation and personal and disease
tioning, Disability and Health (ICF) is a characteristics.
framework that is well known and frequently
used in rehabilitation medicine, also for children
with cerebral palsy.6 It provides a framework
for describing the health outcomes of a disease Method
at the level of body function and structure
(impairments), daily activities and participa- Participants
tion. In this study, functioning is described in The participants were recruited for a three-year
terms of outcomes at the levels of activities and longitudinal study. The current study was based on a
participation. cross-sectional analysis of the first (baseline) mea-
Studies on functioning and associated factors, surement. Rehabilitation centres, special schools for
mainly concerning young children with cerebral physically and mentally disabled children, and out-
palsy, have suggested that the severity of the patient clinics of departments of rehabilitation
cerebral palsy, cognitive impairment and age are medicine in the north-west region of the Nether-
important factors that are related to limitations in lands identified 244 children 9, 11 and 13 years of
activities and participation in young children with age with cerebral palsy. The study protocol was
cerebral palsy.7,8 A significant association has also approved by all the regional medical ethics commit-
been found between motor functioning and the tees. This research was performed as part of the
severity of cerebral palsy, diagnostic subgroups, PERRIN (Pediatric Rehabilitation Research in the
Netherlands) programme, which is a longitudinal
epilepsy and intellectual capacity.9 One study
study of children with cerebral palsy.
found an association between functional limita-
tions and higher levels of the Gross Motor
Function Classification System (GMFCS).10 In Measurements
two reports concerning children with cerebral Activities and participation were described in
palsy aged 518 years, significant limitations the following domains: mobility, self-care, domes-
were found in all categories of activities of daily tic life, social life and communication, and were
assessed with the Pediatric Evaluation of Disability
living and social roles. The greatest limitations
Inventory (PEDI) and the Vineland Adaptive
were found in school and social integration, and
Behavior Scale (VABS). Mobility was also mea-
these limitations were positively associated with sured with the Gross Motor Function Measure
the severity of the cerebral palsy.11,12 (GMFM).
Few reports on activities and participation of The GMFM is a standardized observational
children with cerebral palsy have focused on the instrument that has been developed to measure
age group before and during puberty. In this gross motor function in children with cerebral
period in particular many changes take place, palsy, based on their performance of 88 gross
such as a growth spurt, puberty itself, behavioural motor tasks upon instruction in a specific test
changes and, for most children, transition to situation.13,14 The GMFM was analysed with the
secondary school, which may influence the func- Gross Motor Ability Estimator computer scoring
tioning of these children. Consequently, it is programme (GMAE) to obtain the GMFM-66
important to get insight into functioning of this score.15,13 The GMAE rescales the child’s abilities
specific age group. The main aims of this study from an ordinal scale to an interval scale, ranging
were: from zero to one hundred.
The PEDI is a standardized instrument for
1) to describe activities and participation in the evaluating functioning in the subscales mobility,
domains of mobility, self-care, domestic life, self-care and social function in disabled or chroni-
social functioning and communication in 9- cally ill children aged 07.5 years. It can also be
to 13-year-old children with cerebral palsy, used to assess older children if their functional
and abilities are below those of children up through
Activities of children with cerebral palsy 939
the age of 7.5 years.16 18 For each domain three centres for severely (cognitive and physical) handi-
independent scale scores can be calculated: func- capped children. Gender and age were included as
tional skill level, caregiver assistance and modifi- personal characteristics.
cations. In this study we only used the raw scores
for functional skill level. We used the Dutch Data collection
adaptation and translation of the PEDI.18 All children and their parents visited the De-
The VABS has been designed to assess function- partment of Rehabilitation Medicine at the VU
ing in the subscales motor skills (mobility), daily University Medical Center in Amsterdam. During
living skills (domestic life), communication and the visit a trained researcher asked standardized
socialization (social life) of children aged 0 17 questions about diagnosis, epilepsy and type of
years, with and without disabilities.19 We used the school, performed the GMFM and classified the
Dutch translation of the VABS survey form,20 and children according to the GMFCS. At the same
used the raw scores and compared them to the raw time, an investigator from the Department of
scores of norm children (American population). Orthopedagogy interviewed the parents to com-
Both the PEDI and the VABS were administered in plete the PEDI and the VABS.
a semi-structured interview with the child’s parents
or caregivers.
Statistical analyses
Statistical analyses were performed with SPSS
Associated factors software version 11.5 (SPSS Inc., Chicago, IL,
Associated factors were chosen if they could USA). The GMFM-66, PEDI mobility, VABS
routinely be assessed in regular medical examina- motor skills, PEDI self-care, VABS daily living
tions. The ‘severity’ of the cerebral palsy was skills, PEDI social function, VABS socialization
classified according to the Gross Motor Function and VABS communication were analysed as de-
Classification System (GMFCS). The GMFCS is a pendent variables. The GMFCS, limb distribution,
5-level classification system by age in which epilepsy, cognitive impairment, gender and age
distinctions between the levels of motor function were included in the analysis as independent
are based on functional limitations, the need for variables.
assistive devices and, to a lesser extent, quality of First, univariate analyses were performed to
movement, and was developed using GMFM determine the relationship between the dependent
scores.21,22 The disease characteristics that were variables and each of the independent variables.
analysed were limb distribution, epilepsy and Multiple linear regression models were then made
cognitive impairment. Limb distribution was sub- for each of the dependent variables and the
divided into three categories: hemiplegia (unilat- independent factors that were significant in the
eral involvement), diplegia or quadriplegia (both univariate analyses (P B/0.1).23 The categorical
bilateral involvement). Quadriplegia was defined variables limb distribution and GMFCS were
as the arms being as severely or more severely analysed as dummy variables.24 Epilepsy, cognitive
affected than the legs; diplegia was defined as the impairment and gender were included as dichot-
legs being more severely affected than the arms. omous variables, and age as a continuous variable.
Children with repeated seizures during the pre- The models were made without interactions. Post-
vious two years were defined as having epilepsy. hoc Bonferroni correction was applied to test
Cognitive impairment was based on school type: differences between the different levels of the
children classified as having no cognitive impair- categorical variables (GMFCS and limb distribu-
ment were those who were following a regular tion). Normal plots for residuals were made to
education programme in a regular school or in a check whether the residuals were approximately
school providing special education for physically normally distributed. The PEDI data on self-care
disabled children. Children with a cognitive im- and social function were transformed because the
pairment were those who were following special residuals showed a skewed distribution, using a log
education programmes in special schools for transformation of the reverse scores to obtain a
children with cognitive impairment (with or with- normal distribution. The strength of the observed
out physical disabilities), or in special day-care relationships is described with the partial eta2
940 JM Voorman et al.
(defined as the sum of squares of the factor Self-care and domestic life
(SSfactor), divided by the sum of SSfactor and the The regression models for PEDI self-care and
error sum of squares (SSerror)). VABS daily living skills are shown in Table 4.
Transformed data are presented for the PEDI
self-care. The GMFCS, limb distribution and
cognitive impairment, and for daily living skills
Results also age, were significantly associated with self-
care and daily living skills, explaining 65% and
81% of the variance, respectively. In these
The characteristics of the participants are pre- models the GMFCS was the most important
sented in Table 1. Of the 224 children identified, associated factor. Functioning decreased progres-
110 children and their parents returned the in- sively with increasing GMFCS level. Children
formed consent form. with a cognitive impairment functioned at a
The box and whisker plots (Figure 1) show the lower level on both outcomes, and children with
distribution of functioning for each GMFCS level. diplegia functioned better than children with
The mean scores for functioning according to the quadriplegia (daily living skills) and hemiplegia
GMFCS levels and levels of significance are (self-care). Daily living skills were better in older
presented in Table 2. children.
GMFCS, Gross Motor Function Classification System; HP, hemiplegia; DP, diplegia; QP, quadriplegia.
Activities of children with cerebral palsy 941
60
80
60
PEDI Mobility
GMFM 66
60 40
40
40 30
20
20
20
10
0 0 0
I. II. III. IV. V. I. II. III. IV. V. I. II. III. IV. V.
GMFCS GMFCS GMFCS
140
60
PEDI Self-care
120
100
40
80
60
20 40
20
0 0
I. II. III. IV. V. I. II. III. IV. V.
GMFCS GMFCS
60 120 120
VABS Communications
PEDI Social function
VABS Socialization
50 100 100
40 80 80
30 60 60
20 40 40
10 20 20
0 0 0
I. II. III. IV. V. I. II. III. IV. V. I. II. III. IV. V.
GMFCS GMFCS GMFCS
Figure 1 Box plots of activities and participation according to Gross Motor Function Classification System (GMFCS) level. (a)
GMFM-66, PEDI mobility, VABS motor skills; (b) PEDI self-care and VABS daily living skills, (c) PEDI social function, VABS
socialization and communication. PEDI, Pediatric Evaluation of Disability Inventory; VABS, Vineland Adaptive Behavior Scale;
GMFM, Gross Motor Function Measure.
942 JM Voorman et al.
Table 2 Mean scores for activities and participation according to GMFCS levels (95% confidence interval)
I (n /50) 60.5 (59.3 to 61.8)5 103.0 (99.6 to 106.4)5 111.8 (108.2 to 115.3)4,5
II (n /16) 53.9 (46.7 to 61.1)5 91.7 (76.7 to 106.7)5 95.6 (78.5 to 112.8)5
III (n /13) 54.6 (48.9 to 60.3)5 90.9 (77.9 to 103.9)5 93.0 (79.0 to 107.0)5
IV (n /13) 56.1 (53.3 to 58.9)5 92.3 (83.1 to 101.6)5 85.2 (70.1 to 100.2)1,5
V (n /18) 37.6 (26.6 to 48.6)1 4 65.1 (46.7 to 83.6)1 4 58.4 (38.5 to 78.2)1 4
Total: mean (range) 54.7 (6 65) 92.5 (14 122) 95.8 (5 132)
P-value B/0.001 B/0.001 B/0.001
GMFCS, Gross Motor Function Classification System; CI, confidence interval; GMFM, Gross Motor Function Measure; PEDI,
Pediatric Evaluation of Disability Inventory; VABS, Vineland Adaptive Behavior Scale.
1: significantly different compared with GMFCS I.
2: significantly different compared with GMFCS II.
3: significantly different compared with GMFCS III.
4: significantly different compared with GMFCS IV.
5: significantly different compared with GMFCS V.
with diplegia appeared to function better than choice of medical intervention.4,5 As the popula-
children with quadriplegia, and communication tion of children with cerebral palsy is heteroge-
increased with age. neous, it is necessary to classify the children
according to the ‘severity’ of the cerebral palsy.
The results of this study show that the variability in
activities and participation reduces considerably
Discussion when children are classified according to the
GMFCS, particularly with regard to the mobility
Descriptions of the activities and participation of domain outcomes.
children in the transition period between child- The analyses showed that the GMFCS was the
hood and adulthood are important in order to only factor that was strongly associated with
improve the knowledge about functioning of mobility. These findings were in line with the
children with cerebral palsy, to form a basis for findings of other studies.7,8,10 For the GMFM a
treatment goals, and to guide practitioners in their close relationship with GMFCS level was as
Table 3 Models for mobility: GMFM-66, PEDI mobility and VABS motor skills
GMFCS level V and quadriplegia are set to zero (reference category); GMFCS, Gross Motor Function Classification System; GMFM, Gross Motor Function
Measure; PEDI, Pediatric Evaluation of Disability Inventory; VABS, Vineland Adaptive Behavior Scale; b, regression coefficient; CI, confidence interval; partial
eta2 /SSfactor/(SSfactor/SSerror).
Activities of children with cerebral palsy
943
Table 4 Models for PEDI self-care and VABS daily living skills
For the PEDI self-care transformed data are presented: log-transformation of the reverse of the data. GMFCS level V and quadriplegia are set to zero (reference
category); GMFCS, Gross Motor Function Classification System; PEDI, Pediatric Evaluation of Disability Inventory; VABS, Vineland Adaptive Behavior Scale; b,
regression coefficient; CI, confidence interval; partial eta2 /SSfactor/(SSfactor/SSerror).
Table 5 Models for PEDI social function, VABS socialization and communication
For the PEDI social function transformed data are presented: log-transformation of the reverse of the data; GMFCS level V and quadriplegia are set to zero
(reference category); GMFCS, Gross Motor Function Classification System; PEDI, Pediatric Evaluation of Disability Inventory; VABS, Vineland Adaptive Behavior
Scale; b, regression coefficient; CI, confidence interval; partial eta2 /SSfactor/(SSfactor/SSerror).
Activities of children with cerebral palsy
945
946 JM Voorman et al.
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