Do the abilities of

children with cerebral

palsy explain their
activities and
participation?
Christopher Morris* MSc DPhil;
Jennifer J Kurinczuk BSc MB ChB MSc MD, National
Perinatal Epidemiology Unit;
Raymond Fitzpatrick BA MSc PhD, Department of Public
Health, University of Oxford, UK.
Peter L Rosenbaum MD, CanChild Centre for Childhood
Disability Research, McMaster University, Hamilton, Canada.
*Correspondence to first author at Department of Public
Health, Old Road Campus, University of Oxford, OX3 7LF, UK.
E-mail: christopher.morris@npeu.ox.ac.uk

The aim of this study was to use family-assessed instruments

and details of childrens impairments to explore factors affecting
the activities and participation of children with cerebral palsy
(CP). A postal survey was conducted with families of a
geographically defined population of children with CP aged 6 to
12 years. Family-assessed indices of childrens activities and
participation were the Activities Scale for Kids (ASK) and
Lifestyle Assessment Questionnaire (LAQ-CP). Families also
assessed childrens abilities using the Gross Motor Function and
Manual Ability Classification Systems (GMFCS; MACS). Details
of childrens impairments were available from the 4Child
epidemiological database and used with the GMFCS and MACS
as explanatory variables in multiple regression analyses to
identify their effect on childrens activities and participation.
Families of 175/314 (56%) children returned an assessment
using the GMFCS and 129 (41%) children participated fully by
returning all the questionnaires. Full participants (72 males, 57
females) did not differ from those who did not take part by their
age, sex, CP characteristics, or associated impairments: GMFCS
Level I25, Level II43, Level III15, Level IV14, Level V23;
MACS Level I14, Level II30, Level III18, Level IV13, Level
V13. Scores for the ASK and LAQ-CP Physical Independence
and Mobility domains were predicted well by childrens
movement, manual, and intellectual disability, and also, to some
extent, by the presence of seizures or speech problems. LAQ-CP
domains for Economic and Clinical Burden and Social
Integration were not well explained by childrens abilities and
impairments. Family assessment, therefore, offers a useful
method for measuring childrens activities and participation;
however, currently available instruments do not fully represent
all the domains in the International Classification of
Functioning, Disability and Health. Childrens abilities only
partially explain their activities and participation.

954

Developmental Medicine & Child Neurology 2006, 48: 954961

The International Classification of Functioning, Disability and

Health (ICF) has replaced its predecessor, the International
Classification of Impairment, Disability and Handicap
(ICIDH).1 The ICF makes a distinction between the bodys
functions and structures and activities and participation.2
Activities and participation are defined as involvement in life situations; these are associated with the body structure and functions but also mediated by personal and environmental factors.
The life situations initially included in the ICF domain for activities and participation were generally described for adults and
there was little recognition of developmental issues.3,4 More
recently the World Health Organization (WHO) has published a
specific International Classification of Functioning, Disability and Health Version for Children and Youth online.5
Previous studies have sought to examine associations
between impairments of body functions and structures and
associated activity limitations and restrictions in participation
for children with cerebral palsy (CP). Beckung and Hagberg
explored these associations for children with CP aged between
5 and 8 years old by reviewing the childrens clinical records.6,7
They found that movement, manual, and learning disabilities*
were the best predictors of childrens participation. Hammal et
al., using a routinely administered family-assessed instrument,
reported that participation of 4- to 5-year-old children with CP
in the north of England appeared to vary by the area in which
they lived.8
The aim of this study was to describe the activities and participation of children with CP, as defined by the ICF, using
family-assessed instruments, and to identify the effect of childrens impairments, abilities, and deprivation in their area of
residence on their activities and participation.
Method
STUDY POPULATION

The population eligible for inclusion in the survey were families of children with CP born to a mother who was resident at
the time of the childs birth in the Thames Valley, comprising
Berkshire, Buckinghamshire, and Oxfordshire, UK. The survey
was conducted in 2003 when the children were between 6 and
12 years old. The source of the study population was the Four
Counties Database of Cerebral Palsy, Vision Loss and Hearing
Loss in Children (4Child). The study was approved by the
Oxfordshire Research Ethics Committee and the Central
Manchester Multicentre Research Ethics Committee.
Current addresses and details of general practitioner (GP)
for the children were traced using the NHS National Strategic
Tracing Service. GPs were offered the opportunity to withdraw a family from the study if they felt it would have been
inappropriate to contact them. The families of children not
otherwise excluded (n=321) were invited to take part in the
study. Families residing in the Thames Valley were provided
with information in both child and adult forms and those
who returned a signed consent form were mailed questionnaires; families outside the area received the questionnaires
with the invitation and the return of completed questionnaires was taken as implied consent to take part. Methods
recommended for maximizing response were used wherever
possible, including personalizing the letter and sending two
reminders, one after 4 weeks and then again after 2 weeks,
but no inducement was offered.911
*North American usage: mental retardation.

QUESTIONNAIRES

A structured review of family-report instruments to measure

the activities and participation of children with CP concluded
that the best available instruments were the Activities Scale for
Kids (ASK) and Lifestyle Assessment Questionnaire (LAQ-CP).12
The ASK was developed in Canada as a generic instrument to
measure childrens physical functional performance in the
community,13 and only required minor amendment for use
in the UK. The ASK produces a single score ranging from 0 to
100, where higher scores indicate better functioning.
The LAQ-CP is a condition-specific instrument for children
with CP developed to assess the impact of disability on family
life.14 The LAQ-CP produces six dimensional scores based on
the domains included in the ICIDH: Physical Independence,
Mobility, Clinical and Economic Burden, Schooling, Social
Integration, and an overall summary score. Domain and summary scores range from 0 to 100, where higher scores indicate
greater activity limitations and participation restrictions.
Families were asked to classify their childs movement
ability using the Gross Motor Function Classification System
(GMFCS)15 by a questionnaire that has been shown to be reliable (interclass correlation coefficient [ICC] at least 0.9).16,17
The Manual Ability Classification System (MACS) was developed to describe the ability of children with CP to handle
objects.18 As the MACS became available after the survey had
begun, participating families were mailed the MACS instructions separately and asked to indicate the MACS level that
best represented their childs manual ability. The reliability
of family compared with professional assessment for the
MACS in this study was found to acceptable (ICC0.7).19

sequence until only those variables significant at or below

the p<0.05 level remained in the model. The procedure was
conducted manually, which meant that the fit of logical permutations of explanatory variables relevant to the outcomes
was explored.
The robustness of the fit of the final regression models was
checked using the following diagnostic procedures: (1) examining the proportion (%) of variance explained overall by the
model; (2) plotting a histogram of the standardized residual
values to see whether these were normally distributed. The
residuals being the amount of score that remains unexplained
by the model; the residuals were then standardized to have a
mean of zero; (3) plotting the standardized residuals against
the fitted residual values predicted by the model and examining their distribution for outlying cases that were unusually
distant from zero; and (4) the Breusch-Pagan/Cook-Weisberg
tests22,23 for heteroskedasticity was used to test whether the
variance in the residuals varied for particular values of the

Eligible
population
(n=338)

1 died
5 untraceable

GPs informed
(n=332)

IMPAIRMENT AND AREA DEPRIVATION DATA

Details of each childs impairments were extracted from the

4Child database, including type and distribution of CP, presence of seizures, hearing or vision impairments, ratings of childrens intellectual ability, and upper and lower limb function.
This information is reported to 4Child by the paediatrician
responsible for the care of the child at age 5 years as part of
the process for case notification and registration when the diagnosis is confirmed. The English Indices of Multiple Deprivation
2004 (IMD)20 were used as a measure of deprivation in the
families areas of residence at the time of the survey. The IMD
scores for England were divided into national quintiles.
Tables provided by the Office of the Deputy Prime Minister
were used to assign the postcode of each family in the study
population, including non-responders, to an IMD quintile.

11 excluded
by GPs

Invited
(n=321)

Invitations
delivered
(n=314)

34 declined
95 did not
respond

STATISTICAL ANALYSES

All data were entered twice and discrepancies corrected. The

analyses were performed using SPSS (version 11) and STATA 8.
2 tests were used to compare the proportion of children
among full and non-participants with each type of impairment to determine whether any differences were statistically
significant. Details of childrens impairments, abilities, and
area deprivation were then used as explanatory variables in
multiple linear regression analyses to explore their effect on
outcomes representing childrens activities and participation
(Table II). Variables that were significant at p0.10 in univariate analyses were retained for the multivariate analyses, which
were conducted using a backwards stepwise regression procedure.21 The explanatory variables showing the least significant association with the outcome were dropped in

7 invitations
returned by
Post Office

Consented
(n=185)

56 returned
partial or no
data

Families of children who participated fully (n=129)

Figure 1: Summary of recruitment of survey participants

from eligible study population. GP, general practitioner.

Factors Affecting Activities and Participation of Children with Cerebral Palsy Christopher Morris et al. 955

values of the explanatory variables; such variation would indicate that the model was not a good fit.
Results
Families of 175/314 (56%) children returned an assessment
using the GMFCS and 129 (41%) children invited participated
fully by returning all the questionnaires, comprising 38% of the
complete geographically defined population (Fig. 1). Only
data from the full participants (72 males, 57 females) were used
in the analyses presented. Children of participating families
were not statistically significantly different from non-participants in age, sex, CP type, or associated impairments (Table I),
although they may have had marginally less intellectual delay
and slightly better upper and lower limb function than nonparticipants. One-third of children in both groups were recorded as not walking. Although a greater proportion of fully
participating families were resident in areas corresponding to
the least deprived IMD quintile, the difference was not statistically significant.
ASK SCORES

Childrens individual ASK scores from the survey ranged

from 0 to 92; the scale mean was 67 (SD 46). Families of a few
children who scored zero commented that, in their opinion,
the questionnaire was unsuitable for their child. However,
only two families did not return the questionnaire and many
were completed by the children themselves, albeit with some
assistance. A non-scoring descriptive item in the ASK requested

children to state how much help they had when completing

the questionnaire (Table III); 70% indicated they had participated in the completion of the form.
Approximately one-third of the children performed most
of the ASK activities none of the time. Very few children were
taking care of their own medical needs and one-half of the
children never put their shoes on or made a snack unaided,
nor could they stand still for 10 minutes. However, more
than one-half of the children did get around the house unaided all of the time and were able to get out of bed, in and out
of chairs, and use the toilet unaided all of the time. One-third
of the children never managed to negotiate stairs or heavy
doors. Fewer than one-fifth of children carried a drink without spilling or carried an object with two hands all of the time
whereas one-third never did these activities. Fewer children
were able to get around outside unaided than inside all of
the time and this reduced to one-third for activities where a
slope or rough ground was encountered. Very few children
participated in climbing activities. One-third of children were
taking part in sports they enjoyed on their own and one-half
participated in sports with competitive clubs; however, one
family noted the distance to one such club was too far to travel,
equating to an environmental barrier.
LAQ - CP SCORES

The results for each of the six domains of the LAQ-CP were
examined separately (Table IV). Except for Clinical Burden, the
range of scale scores was broad; mean scores were mid-scale

Table I: Summary of key characteristics of children who were full and non-participants
Mean age, y: m (SD)

Male
Type of cerebral palsy (4Child)
Spastic
Bilateral
Hemiplegia
Dyskinetic
Ataxic
Unclassified
Associated impairments (4Child)
Seizures
Hearing impairment
Vision impairment
Intellectual ability
IQ<50
IQ=5069
IQ70
Lower limb function (4Child)
Walks fluently
Functional, not fluent
Restricting lifestyle
Not walking
IMD 2004
Quintile I
Quintile II
Quintile III
Quintile IV
Quintile V

Full participants (n=129)

9.9 (1.9)
n
%

Non-participants (n=208)
9.8 (2.1)
n
%

72

56

113

54

108
62
46
15
3
3

84
48
36
12
2
2

171
113
58
22
4
12

82
54
28
11
2
6

28
5
25

23
4
19

45
6
32

23
2
15

26
13
74

23
11
65

37
27
98

21
16
66

14
52
16
40

11
40
12
31

11
74
45
70

5
35
21
33

67
23
17
17
3

53
18
13
13
2

76
49
36
27
10

38
25
18
14
5

0.13
0.52
0.28
0.13

0.89
0.61
0.34
0.07

0.05

0.11

4Child, Four Counties Database; IMD, English Indices of Multiple Deprivation.20

956

Developmental Medicine & Child Neurology 2006, 48: 954961

for Physical Independence, Mobility, and Social Integration

and notably lower (indicating less participation restriction) for
Economic and Clinical Burden and Schooling.

vious year. One-half of the children saw a physiotherapist once

per month and one-quarter of families were receiving other
types of support from health or social services.

PHYSICAL INDEPENDENCE

SCHOOLING

About two-thirds of the children were able to get out of bed

and eat cereal unaided, and just fewer than one-half could
wash, dress, and go to the toilet without assistance. More than
one-quarter of the children needed all the activities in the
items to be done for them. Approximately one-half of the
children needed to be lifted for some activities. As well as frequent assistance in the daytime, about one-third of the children also needed regular assistance at night.

One-third of the survey population were attending schools

especially for children with physical or learning disabilities.
Most children attended mainstream schools either with
(23%) or without (41%) a special support unit. Five children
attended boarding schools.

MOBILITY

About two-thirds of the children accessed most rooms in

their houses and one-half could get around at home without
help; one-half of the children needed no assistance to get in
or out of the house. However, despite their abilities, about
two-thirds did not go out unaided.

ECONOMIC BURDEN

One-half of the families had incurred costs purchasing special equipment and other commodities not covered by grants
or allowances in the previous year. Nearly one-half of carers
had made major and permanent changes to their employment, predominantly reducing working hours to care for the
child. One-fifth of families had made changes to their houses
and one-third planned to make adaptations in the next year.
SOCIAL INTEGRATION

CLINICAL BURDEN

In the previous year one-half of the children had been seen by

up to five doctors apart from their school doctor; one-quarter
had to spend time in hospital; and one-fifth had undergone
an operation. One-fifth of the children had spent a few weeks
with some part of their body in plaster and one-half of children
regularly used some form of orthosis. One-quarter of children
were taking up to four doses of medicines in one day and
one-fifth were taking more. About 15% of the children had
experienced seizures occasionally or had regular fits; nearly
one-fifth had been seen by a behavioural specialist in the pre-

Nearly three-quarters of children were residing with both

birth parents and one-quarter with at least one birth parent.
Four children were residing with carers other than their birth
parents; these were not the children at boarding school.
One-quarter of carers reported they did not have anyone
locally they could turn to for help and only one-half of families felt that people were understanding about their childs
disability. Two-thirds of respondents felt that their social life
had been adversely affected and one-half said that family holidays were difficult to organize because of their childs disability. Most families indicated that the child with CP had

Table II: Outcome and explanatory variables used in regression analyses

Outcome variables
ASK score
LAQ-CP Physical Independence
LAQ-CP Mobility
LAQ-CP Clinical Burden
LAQ-CP Economic
LAQ-CP Social integration
Explanatory variables
Age, y
Sex
Type of cerebral palsy
Hearing impairmenta
Visual impairmentb
Intellectual ability
Seizures
Speech
GMFCS level
MACS level
IMD 2004

Type

Range

Source

Continuous
Continuous
Continuous
Continuous
Continuous
Continuous

0100
0100
0100
0100
0100
0100

Family survey
Family survey
Family survey
Family survey
Family survey
Family survey

Continuous
Nominal
Nominal
Nominal
Nominal
Ordinal
Nominal
Nominal
Ordinal
Ordinal
Ordinal

612
Male/Female
Hemiplegia/Bilateral
Yes/No
Yes/No
IQ<50/5069/70
Yes/No
Yes/No
IV
IV
IIV/V

4Child
4Child
4Child
4Child
4Child
4Child
4Child
4Child
Family survey
Family survey
Postcode

aHearing impairment was sensorineural loss of 50dB averaged across range 0.54.0kHz in better ear. In absence
of a pure-tone audiogram, all children with hearing aid fitted for sensorineural loss were included. bVision
impairment referred to visual acuity in better eye of 6/18 or less; if visual acuity could not be measured, assessment
of degree of visual impairment was made on behavioural responses of child. ASK, Activities Scale for Kids;13 LAQCP, Lifestyle Assessment Questionnaire;14 4Child, Four Counties Database; GMFCS, Gross Motor Function
Classification System;15 MACS, Manual Ability Classification System;18 IMD, Indices of Multiple Deprivation.20

Factors Affecting Activities and Participation of Children with Cerebral Palsy Christopher Morris et al. 957

increased stress on the carers and two-thirds indicated that it

had also increased stress on siblings.
FACTORS AFFECTING CHILDREN S ACTIVITIES AND PARTICIPATION

In univariate analyses, all the explanatory variables except sex

and area deprivation were statistically significantly associated
with all the indices of activities and participation. After mutually adjusting for the effect of other variables only a few of the
explanatory variables remained statistically significant (Table
V). The regression models for the ASK and LAQ-CP summary
score and Physical Independence and Mobility domains
appeared to fit the data well. The standardized residuals from
the model were normally distributed and a scatter plot of the
standardized and predicted (fitted) residual values indicated
few outliers. The Breusch-Pagan/Cook-Weisberg tests22,23 for
heteroskedasticity were not statistically significant; these analyses indicate that the variance in the residuals was constant and
the models were a good fit for the data. The indices of childrens movement and manual ability (GMFCS and MACS) and
intellectual ability were incorporated into each of these models; seizures and speech problems explained some additional
variance. For the ASK, for instance, after controlling for the
effects of all other variables, only age, movement ability
(GMFCS level), manual ability (MACS Levels IIV), intellectual
delay (IQ<70), and seizures remained statistically significant
in the model explaining 89% of the variance in ASK scores
(F[12,58]=38.5, p<0.001).
In contrast, the Clinical and Economic Burden domain
scores from the LAQ-CP instrument were not well explained by
the variables used in the analysis (Table V). Both Clinical and
Economic Burden were, to some extent, associated with severity of movement disability. Clinical Burden score was notably
affected for children in GMFCS Level V, and to a lesser extent
Levels IIIV, compared with GMFCS Level I. Economic Burden
score appeared to be elevated in GMFCS Levels IIIV compared with Level I. However, the models did not explain much

Table III: Assistance given to children completing the

Activities Scale for Kids (ASK)
Amount of assistance given
Completed all the questions themselves
Someone read them all the questions
Someone helped with some answers
Someone helped with most answers
Someone else completed all the questions

22
23
22
21
39

17
18
17
17
31

Table IV: Summary of the Lifestyle Assessment Questionnaire

(LAQ-CP) domain scores
Domain

Number
of items

Physical Independence
Mobility
Clinical Burden
Schooling
Economic Burden
Social Integration

12
7
12
2
6
8

Range
(0100)
0
7
0
0
0
3

100
93
55
100
83
88

Standardized
mean (SD)

43 (34)
52 (25)
23 (12)
24 (24)
24 (23)
42 (21)

0.96
0.83
0.69

0.68
0.73

, Cronbachs Alpha statistic.

958

Developmental Medicine & Child Neurology 2006, 48: 954961

of the variance and the tests for heteroskedasticity were highly

statistically significant, indicating that the variance in the residuals was not at all constant. Taken together, these findings suggest that the models did not appear to fit these data well. The
model predicting Social Integration score included movement
ability (GMFCS Levels IIV compared with Level I) and intellectual delay (IQ<70 compared with IQ70), and fitted the data
well, but explained only 36% of the variance (F[6, 105]=11.0,
p<0.001), or 42% if manual ability is included. The standardized residuals were normally distributed but the plot of standardized and predicted residuals shows a stacked pattern due
to the limited number of values the residuals take with there
being only two significant explanatory variables. Children with
bilateral CP, hearing or vision loss, GMFCS Level V, MACS Level
IV and V, or intellectual delay (IQ<70) were more likely to use
special schooling.
CORRELATIONS BETWEEN FAMILY- ASSESSED MEASURES

High levels of correlation were found between the GMFCS, ASK,

and the LAQ-CP Physical Independence and Mobility domains
and the summary score (all r0.9, p<0.01; Table VI). The MACS
was most highly correlated with LAQ-CP Physical Independence
(r=0.83, p<0.01), and moderately with the ASK (r=0.76,
p<0.01). The correlation between the MACS and GMFCS was
moderate (tau-b=0.62, p<0.01). Social Integration and Clinical
Burden scores were not strongly correlated with any of the
other variables (all r0.60), except Social Integration with
LAQ-CP summary score (r=0.72).
Discussion
Using family-assessed measures of childrens abilities and
activities and participation, the findings of the Thames Valley
study concur with similar studies that used professionally
assessed measures.7,8 In general, regardless of who undertakes the assessment, indices of mobility and physical independence for children with CP appear to be best predicted
by movement, intellectual, and manual abilities, and, to a
lesser extent, the presence of seizures and speech problems.
Older children, except for those in GMFCS Level V, appeared
to have a small decrease in their dependence compared with
younger children, as might be expected.
Measures of Clinical and Economic Burden and Social
Integration were generally not well explained by any of the
available explanatory variables. This might be expected as,
using the ICF model, these constructs are perhaps more likely to be strongly influenced by an array of personal and environmental factors. In fact, these domains of the LAQ-CP, as
they are currently constructed, do not consistently equate to
the activities and participation of children themselves, but
are, nonetheless, extremely important issues for the family
with whom the child lives.
Clinical Burden assessed use of health services, such as
the frequency of appointments, therapy, and other interventions. One might expect that children with more impairments would experience greater clinical burden, but this was
not the case in this study; this could be because the items in
the scale were not sensitive to these explanatory factors.
However, aside from a childs impairments, Clinical Burden
may also be a function of environmental factors, such as the
preferences of health professionals favouring particular treatments24 or the overall efficiency with which local services are
organized and delivered.25

Economic Burden, representing whether the family had

had to purchase and maintain special equipment or adapt
their house because of their childs disability, increased
slightly for families of children in GMFCS Levels III to V compared with those in Level I. Families of children in GMFCS
Levels III to V are likely to require assistive technologies or
special equipment to help with their lifting and handling.
The wide range of equipment used by families of children
with disabilities was reported by Beresford et al., who
described how most families have unmet needs for equipment, especially those among ethnic minorities, and that many
families have to purchase equipment themselves.26 Economic
Burden should be interpreted cautiously from this study as
the affluence of the Thames Valley area relative to the national population may underestimate any effects. The LAQ-CP
measure is also limited by whether equipment was purchased or housing adaptations were undertaken in the year
before receiving the questionnaire, or indeed whether they
were necessary but not affordable.
The Social Integration domain measures the familys, rather
than exclusively the childs, participation. The score represents
the availability of help and support for the family and whether

parents or siblings experience extra stress because of having a

child with a disability showed some association with the presence of intellectual and movement disability, but these factors
explained little of the variance in the data. This suggests that
the severity of a childs disability is not in itself a good marker of
their familys ability to cope. Other investigators have examined the health and well-being of caregivers of children with CP
in Canada using structural equation modelling and found that
they were more likely to have physical or psychological health
problems than other caregivers.27,28 Raina and his group suggested that the health and well-being of caregivers is strongly
influenced by childrens behaviour, caregiving demands, and
family functioning;28 they, therefore, emphasized the importance of supporting families and family functioning alongside
delivering the technical aspects of healthcare. Our findings
suggest that families of children across the spectrum of severity
of disability require social support.
The factors affecting LAQ-CP scores in the Thames Valley
differ from those reported for families in the North of England
Collaborative Cerebral Palsy Survey (NECCPS).8 However, the
explanatory variables used to indicate movement and manual ability in that study were slightly different, being based on

Table V: Statistically significant and mutually adjusted variable coefficients for each of the indices of activities and participation
Variable

Levels

ASK

LAQ-CP
Summary

LAQ-CP
Physical
Independence

LAQ-CP
Mobility

LAQ-CP
Economic
Burden

LAQ-CP
Clinical
Burden

LAQ-CP
Social
Integr.

Variance explained (R2adj)

Baseline
Age
Per year
129
Sex
Female
57
Male
72
Type of cerebral palsy
Hemiplegia
46
Bilateral
83
Hearing impairment
No hearing impair. 124
Hearing impair.
5
Vision impairment
No vision impair.
104
Vision impair.
25
Intellectual ability
No delay/IQ70
74
IQ=5069
13
IQ<50
26
Seizures
No seizures
93
Seizures
28
Speech problem
No speech problem 78
Speech problem
43
GMFCS Level
GMFCS Level I
32
GMFCS Level II
43
GMFCS Level III
15
GMFCS Level IV
14
GMFCS Level V
23
MACS Level
MACS Level I
14
MACS Level II
30
MACS Level III
18
MACS Level IV
13
MACS Level V
13
IMD 2004
Quintile I
67
Quintile II
23
Quintile III
17
Quintiles IV/V
20

0.89
77 (9.7)
2 (0.9)

*
10 (5.7)
15 (6.1)
*
9 (3.9)

*
20 (4.0)
47 (5.5)
55 (6.2)
60 (7.9)
*
6 (4.4)
13 (4.9)
14 (7.1)
16 (8.8)

0.85
18 (2.9)

*
14 (2.7)
30 (3.8)
37 (4.2)
44 (5.2)
*
3 (3.0)
9 (3.5)
15 (4.8)
21 (5.7)

0.89
18 (8.9)
2 (0.8)

*
21 (5.5)
6 (5.9)

*
10 (3.7)
*
16 (3.9)
33 (5.1)
44 (6.4)
54 (7.7)
*
9 (4.3)
23 (4.9)
20 (6.9)
31 (8.5)

0.77
18 (2.3)

*
6 (2.9)

*
1 (2.1)
37 (4.9)
48 (4.1)
59 (3.7)

0.56
6 (4.9)

*
3 (4.6)
23 (6.4)
29 (7.0)
27 (8.7)
*
2 (5.1)
4 (5.9)
16 8.0)
20 (9.6)

0.32
27 (5.0)
1 (0.5)

*
8 (2.3)
11 (3.1)
12 (3.2)
19 (2.7)

0.35
24 (3.3)

*
11 (5.2)
13 (6.3)

*
13 (4.2)
27 (5.5)
20 (6.3)
22 (7.5)

*Baseline against which other levels of the same impairment are compared. , variable was not statistically significantly associated with
outcome. ASK, Activities Scale for Kids;13 LAQ-CP, Lifestyle Assessment Questionnaire;14 Integr., integration; impair., impairment; GMFCS,
Gross Motor Function Classification System;15 MACS, Manual Ability Classification System;18 IMD, Indices of Multiple Deprivation.20

Factors Affecting Activities and Participation of Children with Cerebral Palsy Christopher Morris et al. 959

the professional assessments conducted using a modified version of the Evans form29 rather than on the GMFCS and MACS,
for which there is evidence of reliability and validity. The larger sample size of 450 children in the NECCPS study will have
provided greater statistical power to detect differences in the
LAQ-CP scores with greater precision. Hammal et al. created
boundaries using deprivation indices and health districts to
show that participation scores varied by area.8 That finding
was not replicated in the Thames Valley study, and in fact,
deprivation based on area of residence measured using the
IMD 2004 was not significantly associated with scores even in
the univariate analyses. This may have been because of the
relatively prosperous nature of the region and the low variability of area deprivation. A major limitation in understanding the effect of environmental factors on childrens activities
and participation is the lack of a systematic method for collecting these data. The North of England group have since
considered the ways in which prevailing environmental factors can and should be recorded.30,31
The influence of personal and environmental factors on
childrens participation in formal and informal recreation and
leisure activities was studied in Canada using the recently
developed Childrens Assessment of Participation and Enjoyment.32 Childrens functional abilities, their own preferences,
and the families orientation for activities were significant
predictors of participation intensity whereas diagnosis, once
childrens functional limitations and age were taken into
account, was not.33 Family cohesion, income, and the presence
of accessible, accommodating, socially supportive, and nondiscriminatory environments were indirectly associated with
participation through their effect on the child and family
preferences and family functioning.35
The high correlation between GMFCS, ASK, and LAQ-CP
Physical Independence and Mobility domains confirms that
these measures represent constructs related to coordination
and movement, and there is strong evidence for convergent
validity. The MACS correlated highest with Physical Independence and the ASK, providing evidence of convergent validity
as both of these scales include several items that involve handling objects. The moderate correlation between the MACS
and GMFCS is consistent with the findings reported by the
developers of the MACS.18 The weaker correlation between
Clinical Burden and Social Integration and all the other

variables provides evidence of divergent validity that these constructs are not related to each other, to Economic Burden, or to
the severity of a childs movement or manual disability.
Despite the broad issues covered within the ASK and LAQ-CP,
some domains of activities and participation as defined in the
ICF were not assessed in the Thames Valley study using these
instruments. This is a limitation of those instruments currently
available for measuring childrens activities and participation
from the families perspectives, due in part to the recent introduction of the ICF and, specifically, the version for children
and youth. It is likely that, as participation becomes increasingly recognized as the fundamental health outcome for children,
more refined, valid, and reliable family-assessed instruments
for measuring the concept will emerge. For instance, a few
summary items briefly covering key elements of the domains
from the ICF could be combined in a single instrument.
The moderate response to this survey must be acknowledged as a potential limitation to the generalizability of the
findings and the accuracy of the regression models. The key
issues affecting response to the invitation were probably that
families were unfamiliar with 4Child, not contacted by a clinician known to them, and that the topic of the survey may not
have been of sufficient interest or perceived importance.
However, the extent of any response bias was examined using
available information, and, although children in the study might
have been slightly more able than those who did not take part,
no statistically significant difference was found between the
characteristics of the full and non-participating children. The
findings are, therefore, likely to be representative of children
with CP in the Thames Valley, but, as it is generally a relatively
prosperous region compared with the rest of the UK, it is not
possible to determine how generalizable the findings are to
regions with different area deprivation profiles.
Undoubtedly, disability does affect activities and participation, but does not necessarily prevent children from participating at all, which has prompted some investigators to examine
participation intensity.33 From an equity perspective, we
should systematically assess whether the extent of participation
in activities is consistent with the childrens potential, given the
predicament imposed by their disability. Then, we should measure to what extent the provision of technologies, or removal of
barriers, combined with consideration of the childs personal
preferences, enhances their experience of life situations.

Table VI: Correlation between products of family-assessed instruments

GMFCS

MACS
ASK
LAQ-CP
Physical Independence
Mobility
Clinical Burden
Economic Burden
Social Integration
Summary score

MACS

0.62a
0.90

0.76

0.89
0.87
0.53
0.67
0.53
0.90

0.83
0.72
0.46
0.66
0.50
0.80

ASK

LAQ-CP
Physical
Independence

0.95
0.92
0.60
0.70
0.58
0.96

0.88
0.59
0.70
0.56
0.93

LAQ-CP
Mobility

0.60
0.65
0.56
0.93

LAQ-CP
Clinical
Burden

LAQ-CP
Economic
Burden

LAQ-CP
Social
Integration

0.52
0.42
0.62

0.61
0.77

0.72

All values Pearsons correlations except aKendalls tau-b. All correlations p<0.01. GMFCS, Gross Motor Function Classification System;15
MACS, Manual Ability Classification System;18 ASK, Activities Scale for Kids;13 LAQ-CP, Lifestyle Assessment Questionnaire.14

960

Developmental Medicine & Child Neurology 2006, 48: 954961

Conclusions
Family assessment using valid and reliable instruments offers
an inexpensive and expedient method for measuring childrens activities and participation, and uses the knowledge
of those people who know the children best and across the
broadest range of environments. In this study, childrens movement, manual, and intellectual abilities largely predicted the
extent of their physical independence but not other domains
of their activities and participation. However, currently available instruments do not fully represent all the domains in the
ICF Version for Children and Youth. Therefore, a generic
instrument should be developed that would be useful for
children with or without disability. The instrument should be
as brief as possible to complete while also adequately covering the relevant domains, have salience for the children and
their families, and demonstrated validity and reliability.
DOI: 10.1017/S0012162206002106
Accepted for publication 9th June 2006.
Acknowledgements
We thank the families and professionals who took part in the survey
and, at the National Perinatal Epidemiology Unit, Sarah Ayers and
Andy King for assistance with data management and Maria Quigley for
statistical advice. We are grateful to the staff of 4Child for maintaining
the database and to those who routinely send data to 4Child. We are
also grateful to Dr Nancy Young for help using the ASK, and Dr Allan
Colver and Professor Steve Jarvis for their help with using the LAQ-CP.
Chris Morris was funded by a studentship from the Medical Sciences
Division at the University of Oxford and is now a MRC Special Training
Fellow in Health Services Research; Jenny Kurinczuk is partly funded
through a Public Health Career Scientist Award from the Department
of Health and NHS R&D (PHCS 022); Peter Rosenbaum holds a
Canada Research Chair in Childhood Disability; 4Child and the
National Perinatal Epidemiology Unit are both funded directly by the
Department of Health.
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Factors Affecting Activities and Participation of Children with Cerebral Palsy Christopher Morris et al. 961