European Journal of Paediatric Neurology 36 (2022) 19e25

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European Journal of Paediatric Neurology

Exploring demographic, medical, and developmental determinants of

adaptive behaviour in children with hemiplegic cerebral palsy
Sandra Abdel Malek a, b, *, Ronit Mesterman c, Lauren Switzer d, Briano DiRezze a, b,
Gabrielle deVeber e, Darcy Fehlings d, f, g, Yona Lunsky h, i, Michelle Phoenix a, b, d,
Jan Willem Gorter a, b, c
a
School of Rehabilitation Science, McMaster University, 1400 Main Street West, Institute for Applied Health Sciences, Room 403, Hamilton, Ontario, L8S 1C7,
Canada
b
CanChild Centre for Childhood Disability Research, McMaster University, 1400 Main Street West, Institute for Applied Health Sciences, Room 408,
Hamilton, Ontario, L8S 1C7, Canada
c
Department of Paediatrics, McMaster University, 1280 Main Street West, Health Sciences Centre, 3A, Hamilton, Ontario, L8S 4K1, Canada
d
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, Ontario, M4G 1R8, Canada
e
Division of Neurology, Hospital for Sick Children, 555 University Avenue, Neurology Clinic, 6C Atrium, Toronto, Ontario, M5G 1X8, Canada
f
Department of Pediatrics, University of Toronto, 555 University Avenue, Black Wing Room 1436, Toronto, Ontario, M5G 1X8, Canada
g
Rehabilitation Sciences Institute, University of Toronto, 500 University Avenue, Suite 160, Toronto, Ontario, M5G 1V7, Canada
h
Department of Psychiatry, University of Toronto, 250 College Street, 8th Floor, Toronto, Ontario, M5T 1R8, Canada
i
Azrieli Centre for Adult Neurodevelopmental Disabilities, CAMH, McCain Complex Care & Recovery Building, 1025 Queen Street West, Toronto, Ontario,
M6K 1H4, Canada

a r t i c l e i n f o a b s t r a c t

Article history: Hemiplegic cerebral palsy (CP), the most common subtype, is characterized by high levels of mobility.
Received 26 April 2021 Despite this, children with hemiplegic CP can face challenges functioning in and adapting to situations of
Received in revised form everyday life. The purpose of this cross-sectional study (Hemi-NET database) was to identify factors
19 October 2021
associated with adaptive behaviour in 59 children with hemiplegic CP (ages 4e18; GMFCS I-IV). Using
Accepted 12 November 2021
multivariate regression analyses, the relationship between demographic, medical, and developmental
factors and adaptive behaviour (measured by the Adaptive Skills Composite score of the BASC-2) was
Keywords:
explored. Results indicate that 34% of children had impaired adaptive skills. An autism diagnosis and
Cerebral palsy
Hemiplegia
lower communication functioning were significantly associated with poorer adaptive skills (R2 ¼ 0.42,
Adaptive behaviour F(4, 43) ¼ 7.87, p < 0.001), while factors such as IQ scores and GMFCS level were not. The results
Adaptive function contribute to the growing literature that suggests that clinicians and researchers need to look beyond
Intelligence motor functioning when working with individuals with CP.
Functioning © 2021 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.

1. Introduction cognitive, behavioural, or communication and perception impair-

Cerebral palsy (CP) is a diagnosis that refers to “a group of
permanent disorders of the development of movement and posture
causing activity limitation, that are attributed to non-progressive
disturbances that occurred in the developing fetal or infant
brain.” 1(p1) Along with motor impairments, individuals with CP can
also experience seizure disorders as well as additional sensory,
* Corresponding author. School of Rehabilitation Science, McMaster University,
1400 Main Street West, Institute of Applied Health Sciences, Room 403, Hamilton,
Ontario, L8S 1C7, Canada.
E-mail address: abdels11@mcmaster.ca (S. Abdel Malek).
ments [1]. Approximately one in every 400 individuals has a
diagnosis of CP [2], with 33e39% having hemiplegic CP, otherwise
known as hemiparesis or unilateral CP [3,4].
Hemiplegic CP typically affects movement and muscle tone on
one side of the body. The majority of children with hemiplegic CP
(88%) have gross motor function abilities that are classified as level I
according to the Gross Motor Function Classification System
(GMFCS) [5]. Children classified at GMFCS level I are able to walk
without assistive devices, move from floor to chair to standing, go
up and down stairs, and run and jump [6]. Most children with
hemiplegic CP (79%) are also classified at level I or II according to
the Manual Ability Classification System (MACS) [7]. According to

https://doi.org/10.1016/j.ejpn.2021.11.005
1090-3798/© 2021 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.
S. Abdel Malek, R. Mesterman, L. Switzer et al. European Journal of Paediatric Neurology 36 (2022) 19e25

the MACS, level I indicates that a child is able to easily and suc-
cessfully handle objects, while level II indicates the ability to handle
most objects with somewhat reduced quality and/or speed of
achievement, but with minimal impact on independence in daily
activities [8].
Early motor function has been demonstrated to be predictive of
functional capabilities, such as mobility, self-care, and social func-
tion, as well as the degree of caregiver assistance and environ-
mental modifications needed to perform these tasks [9,10]. Manual
ability has also been shown to be significantly associated with
functional status, particularly in relation to self-care and mobility
[11]. Given their higher levels of mobility and manual ability, chil-
dren with hemiplegic CP have typically been thought of as having
fewer challenges engaging in day to day life. This view is often
intertwined with a belief that motor functioning is indicative of
overall functioning and that GMFCS level “can be used as an indi-
cator of total disability load.”[12](p422) However, this view is
problematic given that, in addition to motor disorders, children
with CP may experience impairments in social behaviour and
communication as well as intellectual disability, which can affect
their participation levels at home, at school and in the community
[13,14]. The extent of these non-motor impairments are not only
related to CP characteristics (e.g., MACS and GMFCS level), but are
also related to personal and environmental factors [13]. Collec-
tively, motor and non-motor impairments can influence an in-
dividual's ability to participate in and adapt to the activities of daily
life, indicating the importance of understanding various predictors
creation of a database of information about children with hemi-
plegic CP using their neonatal, obstetrical, psychological, and health
records, with the goal of improving rehabilitation treatments and
quality of life. The data used in the present study was obtained
through the Hemi-NET database. All participating sites provided
approval through their research ethics boards. All caregivers of
participating children and participants if able provided written
informed consent and assent, respectively, prior to enrollment in
Hemi-NET.
2.1. Participants
A total of 323 children between the ages of 2 and 18 years with a
confirmed diagnosis of hemiplegic CP were recruited for Hemi-NET.
Of those children, 59 had a completed cognitive assessment that
included a measure of adaptive skills and were included in the
present study. There were no significant differences in age, sex,
GMFCS level, or IQ scores between the larger Hemi-NET population
and the sample included in the present study (i.e., p > 0.05) (data
available upon request). Participant characteristics are described in
Table 1.
Table 1
Characteristics of participants.

of different forms of functioning. Participants e n (%)

Adaptive behaviour refers to a set of skills that are considered Sex (male/female) 34/25 (57.6/42.4)
necessary for personal and social functioning and allow one to Age in years (x ± SD); minemax 9.2 ± 4.6; 3.5e18.3
function in and adapt to situations in everyday life [15,16]. The GMFCS
terms adaptive behaviour and adaptive functioning are often used I 48 (81.4)
II 5 (8.5)
interchangeably in the literature. For the remainder of this paper,
III 2 (3.4)
we will use the term adaptive behaviour. Adaptive behaviours are IV 1 (1.7)
categorized into three skill domains, which are conceptual (e.g., V 0 (0)
language, reading and writing, money, time), practical (e.g., per- Missing: 3 (5.1)
sonal care, occupational skills, healthcare, travel/transportation), MACS
I 28 (47.5)
and social (e.g., interpersonal skills, social responsibility, self- II 22 (37.3)
esteem, following rules/laws) [17,18]. Limitations in both adaptive III 3 (5.1)
behaviour and intellectual functioning are requisites for a diagnosis IV 1 (1.7)
of an intellectual disability [19,20], affecting approximately 45% of V 2 (3.4)
Missing: 3 (5.1)
individuals with CP [12,21]. For children with CP across all GMFCS
CFCS
levels, adaptive behaviour has been shown to be related to partic- I 40 (67.8)
ipation, such that more effective adaptive behaviour is associated II 8 (13.6)
with a higher intensity, frequency, and enjoyment of participation III 3 (5.1)
in family, leisure, and recreational activities [22,23]. It has therefore IV 4 (6.8)
V 0 (0)
been suggested that supporting a child's adaptive behaviour may Missing: 4 (6.8)
be one way to improve participation [22,23]. However, little is Maternal Education
known about factors that are associated with adaptive behaviour Primary school 2 (3.4)
specifically in children with hemiplegic CP. Understanding the de- Some high school 2 (3.4)
High school 9 (15.3)
terminants of adaptive behaviour in children with hemiplegic CP
General collegiate 11 (18.6)
may help clinicians identify a range of potential outcomes and Technical college 10 (16.9)
allow parents to make informed decisions regarding early in- University studies 20 (33.9)
terventions. The purpose of this paper is therefore to identify de- Other 3 (5.1)
mographic, medical, and developmental factors that are associated Missing: 2 (3.4)
Cortical Visual Impairment
with the adaptive behaviour of children with hemiplegic CP. Y/N 1/49 (1.7/83)
Unknown: 9 (15.3)
2. Methods Other Visual Impairment
Y/N 13/39 (22/66)
Unknown: 7 (11.9)
This cross-sectional study was part of a larger study conducted
Sensorineural Auditory Impairment
across nine clinical sites in Ontario, Canada as part of the Childhood Y/N 3/44 (5.1/74.6)
Hemiplegic Cerebral Palsy Integrated Neuroscience Discovery Unknown: 12 (20.3)
Network (Hemi-NET) (as described by Fehlings et al. [7] and Zarrei Note. GMFCS refers to the Gross Motor Function Classification System, MACS refers
et al. [24]). Eligible children for Hemi-NET were identified through to the Manual Ability Classification System, CFCS refers to the Communication
health record screening or clinical visits. Hemi-NET involved the Function Classification System.

20
S. Abdel Malek, R. Mesterman, L. Switzer et al.
2.2. Data collection
Participants included in the present study were recruited
through Hemi-NET between 2012 and 2014. Data analyzed in the
present study was collected from three of the nine clinical sites in
southern Ontario that were included in Hemi-NET. Training on
recruitment, eligibility, and data collection and entry was provided
to all personnel involved in the study at each clinical site to ensure
standardization. Demographic information was collected through
standardized parent interviews conducted by a trained research
assistant (RA) upon enrollment in the study. Medical and rehabil-
itation information were collected both retrospectively and pro-
spectively, through chart reviews by the RA and through physician/
occupational therapist (OT) assessment. Psychometric scores were
obtained from clinical records of previously completed assessments
or, if unavailable, prospectively by a psychologist evaluation if the
child was at least 4 years of age.
2.2.1. Health information
Medical information collected from health records included a
comorbid autism diagnosis if a diagnosis was made using a struc-
tured assessment (e.g., Autism Diagnostic Observation Schedule),
as well as whether the child presented with convulsions in the 12
months prior to data collection.
Rehabilitation information pertaining to gross motor function,
manual ability, and communication function was collected by an OT
assessment. An OT classified participants' motor functioning ac-
cording to the Gross Motor Function Classification System (GMFCS)
[6] and the Manual Ability Classification System (MACS) [8]. An OT
also classified participants’ communication performance according
to the Communication Function Classification System (CFCS) [25].
2.2.2. Psychometric assessment
Cognitive behavioural deficits were assessed and scored by a
physician on the Pediatric Stroke Outcome Measure (PSOM) during
the physician's assessment [26]. Intelligence quotient (IQ) scores
were extracted from previously completed neuropsychological as-
sessments where available and were reported as performance,
verbal, and full percentile scores. For children who did not have a
prior assessment, clinical psychologists administered an age-
appropriate Weschler scale of intellectual ability [27] if the child
was at least 4 years of age.
BASC-2. The outcome of interest, adaptive behaviour, was
assessed using the parent report scale (PRS) on the Behaviour
Assessment System for Children e Second Edition (BASC-2) [28].
The PRS of the BASC-2 allows parents to complete an assessment of
multiple areas of their child's behavioural and emotional func-
tioning and takes approximately 10e20 min to complete. An
adaptive skills composite (ASC) score was then calculated using five
of the domains of the BASC-2 PRS (adaptability, functional
communication, leadership, social skills, and activities of daily
living) [28]. The BASC-2 PRS has been shown to have adequate
psychometric properties, resulting in reliable and valid data [29].
The sensitivity of the BASC-2 ASC has also been assessed in com-
parison to the Adaptive Behaviour Assessment System (ABAS-II)
and has been suggested to be an appropriate screening measure for
identifying children with impairments in adaptive function on the
ABAS-II [30].
2.3. Statistical analysis
The data were analyzed using STATA-15 [31]. Variables of in-
terest included demographic factors as well as factors identified
from the literature as being important for adaptive behaviour.
These initial variables included age, sex, hemiparesis side, maternal
21
European Journal of Paediatric Neurology 36 (2022) 19e25
education, GMFCS, MACS, CFCS, IQ (full scale, verbal, and perfor-
mance), ASD diagnosis, cognitive-behavioural deficit, and convul-
sions in the previous year. Descriptive statistics were used to
summarize the data, with means and standard deviations calcu-
lated for continuous variables and percentages and frequencies for
categorical variables. Individual scatter plots and box plots were
created to inspect the linearity of the relationship between each
independent variable and the dependent variable (BASC-2 ASC
score). All BASC-2 scores in the present paper are reported as t
scores. Univariate regression analysis was conducted for each in-
dependent variable. Correlations between all variables and vari-
ance inflation factors (VIF) were calculated to assess for collinearity
and collinear variables were removed from the analysis. Indepen-
dent variables that were individually significantly associated with
the outcome (p < 0.01) were included in the initial regression
model. The initial model was tested for homogeneity of variance
using the Breusch-Pagan/Cook-Weisberg test. A leverage-versus-
residual squared plot was created to examine data points that
may potentially be outliers. A Cook's d test indicated points of high
influence and those with a score greater than 0.05 were assessed.
Stepwise regression was performed to generate a final model.
Statistical significance was set to an alpha level of 0.05 unless
otherwise indicated.
3. Results
A total of 59 children from three pediatric rehabilitation centres
were included in the analysis. The average age of the children at
enrollment was 9 years and 2 months (s.d. ¼ 4 years and 7 months).
Psychological assessment scores were collected both retrospec-
tively and prospectively. As such, the average age at which partic-
ipants completed their psychological assessment was 8 years and 2
months. Of the included children, 58% were male and 42% were
female. Table 1 outlines the demographic characteristics of the
sample and Table 2 outlines summary statistics of the included
independent variables.
The BASC ASC score summary statistics are outlined in Table 3
with summary statistics of each subscale of the ASC score listed
in Table 4. The average overall ASC t-score for children was
43.5 ± 8.8. Approximately 25% of participants had an ASC score
considered to be in the “at-risk” range, which indicates a potential
problem that may need monitoring. About 9% of participants had
scores that are considered in the “clinically significant” range,
indicating a high level of maladjustment that warrants follow-up.
The average score for the domains of the ASC was in the normal
range (>40), with functional communication being the lowest at
Table 2
Results of medical and psychometric variables.
Participants e n (%)
ASD Diagnosis
Y/N 4 (6.8)/46 (78.0)
Missing: 9 (15.2)
Convulsions in the last year
Y/N 5/51 (8.5/86.4)
Missing: 3 (5.1)
Cognitive Behavioural Deficit Level (PSOM)
0 (no deficit) 25 (42.4)
0.5 (mild deficit, normal function) 11 (18.6)
1 (moderate deficit, decreased function) 17 (28.8)
2 (severe deficit, missing function) 3 (5.1)
Missing: 3 (5.1)
IQ Percentile Score (x ± SD); minemax
Performance 34.8 ± 30.8; 0.1e98
Verbal 31.6 ± 25.8; 0.1e95
Full-scale 30.3 ± 26.5; 0.1e96
S. Abdel Malek, R. Mesterman, L. Switzer et al. European Journal of Paediatric Neurology 36 (2022) 19e25

Table 3
BASC Adaptive Skills Composite (ASC) score (t score).

Participants e n (%)

Mean ASC (x ± SD); minemax 43.5 ± 8.8; 19e59

Normal range (>40) 39 (66)
At risk (31e40) 15 (25.4)
Clinically significant (30) 5 (8.5)

42.8 and activities of daily living (ADL) and social skills being the
highest at 48.4 and 53, respectively.
Initial multi-variate regression with all variables that were
significantly associated (p  0.01) with the ASC in univariate
analysis (Table 5) revealed an R2 value of 0.47 with F(9, 33) ¼ 3.19,
p ¼ 0.007, with CFCS level being significantly associated with ASC
score. An assessment of collinearity revealed that full scale IQ score Fig. 1. Average ASC score by autism diagnosis.
was collinear and was therefore removed from the analysis. Step-
wise regression analysis (backwards elimination) then revealed
that autism diagnosis and CFCS level were significantly associated demonstrated that an ASD diagnosis and CFCS level are signifi-
with the ASC score, while the remaining variables (performance cantly associated with ASC score, together explaining 42% of the
and verbal IQ scores, PSOM, GMFCS level) were not; R2 ¼ 0.42, F(4, variance seen in ASC scores in this sample. Interestingly, GMFCS
38) ¼ 6.82, p < 0.001. An autism diagnosis was associated with level and IQ were not found to be significantly associated with
lower ASC scores (Fig. 1) while increasing function according to the adaptive behaviour.
CFCS was associated with higher ASC scores (Fig. 2). Thus, the final The findings of this study are in line with previous studies that
model included autism diagnosis and CFCS level, R2 ¼ 0.42, F(4, have demonstrated a correlation between adaptive behaviour and
43) ¼ 7.87, p < 0.001 (Table 6) and met the assumptions of ho- autism symptom severity [33e35]. Prior research has shown that
mogeneity of variances and normality of the residuals. ASD appears to be more common among children and adolescents
with CP compared to the general population, with estimates of
7e11% of children with CP having a comorbid ASD diagnosis
4. Discussion
compared to 1.5% of the general population [36e39]. Recent esti-
mates suggest that up to 22% of individuals with hemiplegic CP
The purpose of this study was to determine the factors that are
have a comorbid ASD diagnosis [40]. To our knowledge, this is the
associated with adaptive behaviour in children with hemiplegic CP.
first study that has found an association between a comorbid
This study found that approximately 34% of children with hemi-
autism diagnosis and adaptive behaviour in children with CP. Given
plegic CP had ASC scores considered in the at risk or clinically
the high prevalence of ASD in children with CP and that ASD was
significant range [32]. The results indicate that a large proportion of
found to be associated with poorer adaptive behaviour, it is
children with hemiplegic CP may have issues with adaptive
important for both researchers and clinicians to consider the
behaviour that require attention. Additionally, this study

Table 4
ASC Domains (t score).

(x ± SD); minemax Participants with available score - n (%)

Adaptability (46.3 ± 10.1); 12e66 59 (100)

Functional communication (42.8 ± 10.1); 24e68 58 (98.3)
Leadership (44.6 ± 8.1); 28e59 38 (64.4)
Social skills (48.4 ± 9.3); 25e67 59 (100)
ADL (53 ± 11.3); 45e61 2 (3.4)

Table 5
Univariate regression analysis with BASC ASC score.

Independent Variable Coefficient t p 95% confidence interval

CFCS 5.67 5.2 <0.001 7.86 to 3.48

Autism diagnosis 14.39 3.45 0.001 6.01e22.77
Performance IQ 0.11 3.02 0.004 0.04e0.18
Verbal IQ 0.13 2.79 0.007 0.04e0.21
Cognitive behavioural deficit (PSOM) 3.12 2.75 0.008 5.39 to 0.85
GMFCS 4.87 2.58 0.01 8.66 to 1.08
Full-scale IQ 0.11 2.67 0.01 0.03e0.20
MACS 2.8 2.3 0.03 5.24 to 0.36
Cortical visual impairment 5.94 1.61 0.11 1.45e13.32
Convulsions in the last year 6.51 1.6 0.12 1.63e14.65
Other visual impairment 3.05 1.30 0.20 1.67e7.78
Hemiparesis side 1.17 0.51 0.61 3.44e5.78
Sex 0.4 0.17 0.87 5.06e4.27
Age 0.2 0.07 0.94 0.53e0.50
Sensorineural auditory impairment 0.12 0.05 0.96 5.20e5.44

22
S. Abdel Malek, R. Mesterman, L. Switzer et al. European Journal of Paediatric Neurology 36 (2022) 19e25

suggesting that in addition to exploring composite scores, the

components of adaptive behaviour should also be considered
independently. Additionally, prior studies exploring determinants
of adaptive functioning in children with CP have recruited partici-
pants with all sub-types of CP and included the full spectrum of
GMFCS levels [9,42,44]. The majority of participants in the present
study (90%) were classified in GMFCS levels I and II and this may, in
part, explain why GMFCS level was not found to be associated with
adaptive behaviour. However, it is important to note that in spite of
the high level of motor function observed in the study sample,
many of the children, particularly those with lower communication
functioning or an autism diagnosis, were found to have adaptive
skills scores in the “at risk” range, suggesting a need for these skills
to be targeted in clinical practice.
The literature frequently indicates that cognitive functioning
and adaptive behaviour are highly correlated, such that impair-
ments in one are associated with impairments in the other [20]. In
Fig. 2. Average ASC score by CFCS level. the present study, however, IQ was not found to be significantly
associated with adaptive behaviour. This finding aligns with cur-
rent literature that attempts to dispel the misconception that in-
Table 6
Multivariate regression analysis e final model.
tellectual functioning and adaptive behaviour are causally
related [20]. For example, the construct of “adaptive disability” has
Variable Coefficient t p 95% confidence interval
emerged and has been defined as impairment in adaptive function
Autism diagnosis 11.05 2.93 0.005 3.45e18.66 associated with behavioural factors, such as conduct problems or
CFCS e II 3.04 1.10 0.28 8.60e2.52 inattention, in the absence of impaired intelligence [46e48]. Chil-
CFCS e III 8.30 1.97 0.055 16.79e0.20
dren with average intelligence who also experience behavioural
CFCS e IV 15.95 3.68 0.001 24.68 to 7.21
challenges have been shown to have impaired adaptive functioning
comparable to children with low intelligence and no behavioural
issues [46], illustrating that impairments in adaptive behaviour can
presence of an ASD diagnosis or ASD symptomatology when
occur across cognitive and behavioural conditions. However, it is
assessing adaptive behaviour.
important to note that impairments in both intellectual functioning
The present study also demonstrated the importance of
and adaptive behaviour, in addition to onset during childhood, are
acknowledging communication function in children with hemi-
requisites for a diagnosis of an intellectual disability [19]. Given that
plegic CP. Approximately 30% of children with hemiplegic CP are
a diagnosis of intellectual disability is often used as a criterion for
classified in CFCS levels III, IV, or V, indicating difficulty commu-
determining eligibility for various services and funding [49] and
nicating effectively with unfamiliar and/or familiar part-
that adaptive functioning impairment can often occur without an
ners [25,41]. Given that the present study demonstrated that
intellectual impairment [30], many individuals without a diagnosis
children who are classified at CFCS levels III and IV appear to
of an intellectual disability can be rendered ineligible for services
experience greater difficulties in adaptive behaviour compared to
that may be of benefit. This is of concern given that 34% of children
children who are classified at CFCS levels I and II, communication
with hemiplegic CP in the present study had adaptive behaviours in
function is important for clinicians to consider when identifying
the at risk or clinically significant range although IQ was not
children who may be at risk for issues with adaptive function. As
associated with adaptive behaviour. Additionally, given that adap-
the CFCS classification is both informative and easy to obtain in
tive behaviour has been shown to be associated with outcomes in
children with hemiplegic CP during a clinic visit, it is recommended
adulthood such as work and residence independence and support
to assess, review and document the CFCS, together with GMFCS and
need, with lower levels of adaptive behaviour associated with
MACS, in all children with hemiplegic CP.
decreased independence [50,51], it is imperative that adaptive
Various studies exploring functioning in children with CP have
behaviours and related factors are acknowledged by clinicians.
demonstrated an association with GMFCS level, such that higher
Future research should also aim to explore the relationship be-
levels of gross motor functioning are associated with higher levels
tween adaptive behaviour and individual cognitive functions
of functioning in everyday life [9,42e44]. In contrast, GMFCS level
beyond IQ, in particular, specific executive functions such as
was not a significant predictor of adaptive behaviour in this study.
working memory and processing speed, as these are well known
Previous research has shown an association between motor func-
cognitive impairments in CP [52].
tioning and participation in ADL [9,10]. As such, it is possible that
The BASC-2 ASC, the primary outcome used in this study, is a
the small number of available ADL scores in the present study
parent-reported screening tool and may be a feasible tool to
influenced the association between GMFCS and the overall ASC
implement in clinical practice. Other measures of adaptive func-
score. It is also possible that a child's ability to perform ADLs is
tioning, such as the VABS-II, can be conducted via interview; while
influenced by GMFCS level, while other components of adaptive
this may be more comprehensive, such measures can pose time and
behaviour (i.e., adaptability, functional communication, leadership,
financial constraints that may limit their use in clinical practice
and social skills) are not. For example, GMFCS level does not seem
when adaptive impairment is not being explicitly addressed [30]. In
to have a direct effect on social functioning [13]. The present
contrast, the ASC provides a summary of a child's adaptive skills
findings can therefore inform future research on how different
and can easily and practically be implemented in clinical practice.
factors may influence the components of adaptive behaviour in
Despite the potential of bias inherent to parent report, the ASC has
different ways.
been suggested to be an appropriate screening measure for iden-
Previous studies have indicated that specific domains of adap-
tifying children who require further attention in specific areas of
tive behaviour can contribute to outcomes to varying degrees [45],
their adaptive function [30], making it a useful tool for efficiently
23
S. Abdel Malek, R. Mesterman, L. Switzer et al.
identifying children who may be at risk for adaptive impairment.
There are some limitations to this study that should be
acknowledged. First, the number of participants included in the
present study was limited to the number of participants from the
larger Hemi-NET study who had completed BASC-2 assessments. As
such, a power calculation could not be conducted prospectively and
we acknowledge that the sample size is small. However, the present
sample did not differ statistically from participants of the larger
Hemi-NET study, suggesting that this subset is a representative
sample. Additionally, this study was intended to be exploratory and
the findings provide direction for future research on adaptive
behaviour in children with hemiplegic CP, particularly in relation to
an autism diagnosis and communication functioning. While no
detailed data were available in the present analysis on etiology or
epilepsy-related factors (e.g., confirmed diagnosis, anti-convulsant
medication, etc.), we hope that the results of the present study may
inspire further research on adaptive behaviour in children with CP.
Second, in the Hemi-NET study, data for some participants were
extracted from a previously completed psychological assessment
while others were administered an assessment as part of the study.
It is possible that participants with a previously completed
assessment differed from the rest of the sample as they may have
been identified by their healthcare provider as being at risk and
therefore referred for an assessment. However, the majority (63%)
of participants completed the assessment as part of the study
rather than by referral. Given that the included sample did not
differ significantly from the Hemi-NET population, it can be
assumed that this subset is a representative sample. It is also
important to note that due to the nature of this data set, the BASC-2
and IQ tests were not completed at the same time for most par-
ticipants who were between the ages of 4 and 18 years. However,
there is evidence to suggest that normed IQ scores remain stable in
children with CP over the age of 5, [53] suggesting that the effects of
this time gap, and the age range of participants, on the results are
limited. Future studies should aim to explore the developmental
trajectory of adaptive behaviour and related factors to determine if
and how these relationships change over time.
The results of the present study have implications for both
clinical practice and research. Although children with hemiplegic
CP tend to have the best motor capabilities, the present study in-
dicates that many may be at risk for impairments to adaptive
behaviour. Communication functioning (CFCS level) and an autism
diagnosis are important factors to consider when identifying in-
dividuals who may be at risk for poorer adaptive functioning.
Adaptive behaviours need to be acknowledged in clinical practice
given their association with family impact [45] as well as quality of
life and support needs in adulthood [51,54]. Future research should
aim to explore the developmental trajectory of adaptive behaviour
in children with CP and if/how relationships between the specific
skill domains and associated factors change over time. Additionally,
future research can explore The results of the present study add to
the growing body of literature [10,55] that suggest that clinicians
and researchers need to look beyond motor functioning when
working with individuals with CP.
Funding
This research was conducted with the support of the Ontario
Brain Institute, an independent non-profit corporation, funded
partially by the Ontario government. The opinions, results and
conclusions are those of the authors and no endorsement by the
Ontario Brain Institute is intended or should be inferred.
24
European Journal of Paediatric Neurology 36 (2022) 19e25
Declaration of competing interest
There are no conflicts of interest to declare.
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