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1 Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht University and De Hoogstraat Rehabilitation,
Utrecht, the Netherlands. 2 Department of Pediatrics, CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada. 3 Department
of Rehabilitation, Physical Therapy Science & Sports, UMC Utrecht Brain Center, University Medical Center, Utrecht; 4 Department of Child and Youth, De Hoogstraat
Rehabilitation, Utrecht; 5 Sleep Medicine Center, Kempenhaeghe, Heeze, the Netherlands.
Correspondence to Olaf Verschuren at Center of Excellence for Rehabilitation Medicine, UMC Utrecht & De Hoogstraat Rehabilitation, Rembrandtkade 10, 3583 TM Utrecht, the Netherlands.
E-mail: o.verschuren@dehoogstraat.nl
PUBLICATION DATA AIM To describe: (1) the frequency and types of sleep problems, (2) parent-rated satisfaction
Accepted for publication 19th April 2021. with their child’s and their own sleep, and (3) child factors related to the occurrence of sleep
Published online 15th May 2021. problems in children with cerebral palsy (CP) and their parents. The secondary objective was
to compare the sleep outcomes of children with CP with those from typically developing
children and their parents.
METHOD The Sleep section of the 24-hour activity checklist was used to assess the sleep of
children with CP and their parents and the sleep of typically developing children and their
parents.
RESULTS The sleep outcomes of 90 children with CP (median age 5y, range 0–11y, 53 males,
37 females, 84.4% ambulatory) and 157 typically developing peers (median age 5y, range 0–
12y; 79 males, 78 females) and their parents were collected. Children with CP were more
likely to have a sleep problem than typically developing children. Non-ambulatory children
with CP were more severely affected by sleep problems than ambulatory children. The
parents of non-ambulatory children were less satisfied about their child’s and their own
sleep. Waking up during the night, pain/discomfort in bed, and daytime fatigue were more
common in children with CP and more prevalent in children who were non-ambulatory.
INTERPRETATION These findings highlight the need to integrate sleep assessment into
routine paediatric health care practice.
A growing body of evidence supports the importance of the child, sleep problems in children with CP are a major
sleep for optimal child health and development.1 Cerebral source of family stress.15,16 A recent review showed that
palsy (CP) represents one of the most common physical parents of children with neurodevelopmental disabilities,
childhood disabilities worldwide.2 Children with CP are a including CP, report poorer sleep quality than parents of
population at risk for the occurrence of sleep problems, typically developing children.17 To improve the sleep of
with parent-reported prevalence rates varying between both children and parents, and thereby optimize their
23% and 46%3–5 compared to 20% to 30% in typically health and well-being, we first have to recognize sleep
developing children.6 Commonly reported sleep problems problems.
in children with CP include difficulty falling asleep, fre- Originating from a need for a brief, practical tool that
quent night-time waking, sleep-related breathing disor- can be easily applied in routine care, we recently developed
ders, early-morning waking, and excessive daytime a 24-hour activity checklist as part of a more general clini-
fatigue.7–11 cal practice guide for children with CP.18 In addition to
Despite widespread recommendations for systematically providing an insight into the physical activities of children
enquiring about sleep and sleep problems in paediatric with CP, the checklist was designed to guide clinicians in
health care,12,13 sleep health is frequently overlooked in determining whether a more thorough assessment or refer-
rehabilitation settings.14 According to the parents of chil- ral is warranted when sleep problems are detected. Now, 1
dren with CP, clinicians rarely ask about sleep during rou- year after the implementation of the 24-hour activity
tine health assessments, with even less attention paid to checklist, we have the opportunity to explore the extent to
parental sleep and the impact on the family.15 This is wor- which sleep problems can be detected in children with CP
risome because in addition to the negative implications for and their parents.
1344 DOI: 10.1111/dmcn.14920 © 2021 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and
distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
The primary purpose of this study was to describe in What this paper adds
children with CP and their parents: (1) the frequency and • Children with cerebral palsy (CP) are more likely to have a sleep problem
types of parent-reported sleep problems, (2) parent-rated than typically developing peers.
satisfaction with their child’s sleep and their own sleep, • Non-ambulatory children with CP are more severely affected by sleep prob-
and (3) child factors related to the occurrence of sleep lems.
problems. Since children with CP have both sleep prob-
• One-third of parents of children with CP report feeling sleep-deprived often
or always compared to a quarter of parents of typically developing children.
lems that are similar to typically developing children and
specific sleep problems related to CP, it is important to The 24-hour activity checklist
place findings in the context of children without CP. Parents completed the 24-hour activity checklist, a brief
Therefore, the secondary purpose of this study was to questionnaire developed to assess the physical activity and
compare the sleep outcomes of children with CP and their sleep patterns of the child and parental sleep.18 For the
parents with comparative data collected from typically purpose of the present study, responses to the Sleep sec-
developing children and their parents. tion of the 24-hour activity checklist (Fig. S1, online sup-
porting information) were used. In this section, parents
METHOD were asked to rate the frequency of child and parent sleep
A multicentre, cross-sectional study was conducted involv- problems within the past month on a 5-point Likert-type
ing children with CP and their parents. In addition, a con- scale (Table 1). Since the checklist assesses the occurrence
venience sample of typically developing children and their of different types of sleep problems that are not necessarily
parents was recruited from the general population as a correlated (i.e. a formative model), analyses regarding
comparison group. The study was approved by the medical structural validity and internal consistency were not rele-
ethics research committee of De Hoogstraat Rehabilitation vant19 and subsequently not reported.
Center, Utrecht, the Netherlands.
Statistical analysis
Participants Data were analysed per study group (children with CP and
The study population consisted of children with CP (aged typically developing children) and within CP subgroups.
0–11y, 53 males, 37 females, 84.4% ambulatory) and their
parents receiving care from three paediatric rehabilitation
settings (a rehabilitation centre, a special education school, Table 1: Items, questions, and response format of the Sleep section of
and the rehabilitation department of a children’s hospital) in the 24-hour activity checklist
the Utrecht province of the Netherlands. Inclusion criteria Item Question Response formata
were children diagnosed with CP across all Gross Motor
Child sleep
Function Classification System (GMFCS) levels and C1 Are you satisfied with the sleep 5-point scale from
between the ages of 0 to 12 years. All families who were of your child? never to always
C2 Does it take more than 5-point scale from
scheduled for a follow-up appointment with their rehabilita-
30 minutes before your child never to always
tion physician received a paper-and-pencil 24-hour activity falls asleep?
checklist at home as part of routine care. Parents were C3 Does your child wake up more 5-point scale from
than three times a night OR is never to always
instructed to complete the questionnaire before their
your child awake for more than
appointment and hand in the checklist during the upcoming 20 minutes during the night?
consultation with their rehabilitation physician, who would C4 Do you think your child wakes 5-point scale from
up too early? never to always
in turn discuss the responses with the parents and collect the
C5 How often does your child snore 5-point scale from
checklists. The parents of children with CP who agreed for at night? never to always
their questionnaire to be used for research signed an C6 Do you think your child 5-point scale from
experiences pain or discomfort never to always
informed consent form for participation in the study. All
in bed?
checklists collected between April 2019 and August 2020 C7 How often does your child 5-point scale from
that were returned complete with signed consent and met experience nightmares? never to always
C8 Does your child seem overtired 5-point scale from
the inclusion criteria were used for data analysis.
or sleepy during the day? never to always
The comparison group consisted of typically developing C9 Does your child use sleep Yes/no. If yes: type,
children (79 males, 78 females) aged between 0 and medication/tablets (e.g. dose, and frequency of
melatonin)? drug
12 years without any known physical, developmental, intel-
Parent sleep
lectual, or behavioural disability (based on parental report). P1 Are you satisfied with your own 5-point scale from
The parents of typically developing children were recruited sleep? never to always
P2 Do you think you have lack of 5-point scale from
via the (social) networks of colleagues and acquaintances.
sleep? never to always
They were invited to participate in the study by e-mail and
a
their responses were collected via an Internet-based version The 5-point scale options are as follows: 1=never (less than once
per month), 2=seldom (1–2 times per month), 3=sometimes (1–3
of the same questionnaire. To ensure anonymity, no socio- times per week/less than half of the week), 4=often (4–6 times per
demographic information, other than sex and age of the week/more than half of the week), 5=always (daily/nightly). All
child, was collected. items, except for C9, included a ‘don’t know’ option.
Difficulty falling asleep Waking up during the night Early-morning waking Snoring
100% 100% * * 100% 100%
0% 0% 0% 0%
g
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at
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bu
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0% 0% 0%
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Figure 1: Parent-reported sleep problems in children with cerebral palsy (CP; total, ambulatory, and non-ambulatory) compared to typically developing
children. The single asterisk indicates a significant difference (Mann–Whitney U test, p<0.05) between the CP and typically developing study groups or
between ambulatory and non-ambulatory children with CP.
ry
ry
in
to
to
op
la
la
l
bu
bu
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al
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ic
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80% 80%
Always
60% 60%
Often
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Figure 3: Self-rated sleep satisfaction and sleep deprivation in the parents of children with cerebral palsy (CP; total, ambulatory, and non-ambulatory)
compared to the parents of typically developing children. The single asterisk indicates a significant difference (Mann–Whitney U test, p<0.05) between
ambulatory and non-ambulatory children with CP.
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