24‐hour activity for children with cerebral palsy: a clinical practice guide

Verschuren, Olaf; Hulst, Raquel Y; Voorman, Jeanine M.; Pillen, Sigrid; Luitwieler, Nicole; Dudink, Jeroen; Gorter, Jan Willem

doi:10.1111/dmcn.14654

Cited by 29 publications

(38 citation statements)

References 31 publications

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“… 15 Second, the checklist is not a validated screening instrument but was designed as a practical tool to open and facilitate the conversation about sleep with parents in the health care setting. 18 In contrast to more extensive sleep screening tools like the Sleep Disturbance Scale for Children, the 24‐hour activity checklist includes questions about parental sleep. This not only gives an insight into the impact of sleep problems beyond the child, it also stimulates a family‐centred care for sleep, an important wish of parents of children with CP.…”

Section: Discussionmentioning

confidence: 99%

“…Parents completed the 24‐hour activity checklist, a brief questionnaire developed to assess the physical activity and sleep patterns of the child and parental sleep. 18 For the purpose of the present study, responses to the Sleep section of the 24‐hour activity checklist (Fig. S1 , online supporting information) were used.…”

Section: Methodsmentioning

confidence: 99%

“…Originating from a need for a brief, practical tool that can be easily applied in routine care, we recently developed a 24‐hour activity checklist as part of a more general clinical practice guide for children with CP. 18 In addition to providing an insight into the physical activities of children with CP, the checklist was designed to guide clinicians in determining whether a more thorough assessment or referral is warranted when sleep problems are detected. Now, 1 year after the implementation of the 24‐hour activity checklist, we have the opportunity to explore the extent to which sleep problems can be detected in children with CP and their parents.…”

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confidence: 99%

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Sleep problems in children with cerebral palsy and their parents

Hulst

Gorter

Voorman

et al. 2021

Develop Med Child Neuro

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Aim To describe: (1) the frequency and types of sleep problems, (2) parent‐rated satisfaction with their child’s and their own sleep, and (3) child factors related to the occurrence of sleep 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. Children with cerebral palsy (CP) are more likely to have a sleep problem than typically developing peers. Non‐ambulatory children with CP are more severely affected by sleep problems. 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.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

mentioning

confidence: 99%

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Sleep problems in children with cerebral palsy and their parents

Hulst

Gorter

Voorman

et al. 2021

Develop Med Child Neuro

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“…Going forward, it is suggested that a simpler first screen using questionnaire-based measures should precede the COS. For example, members of our team recently published on the pilot testing of a 24-hour activity checklist for children with CP. 16 The checklist includes questions about physical activity, screen time, and sleep that can be completed by the patient and family before their clinical appointment. We suggest clinicians should include a shortform physical activity questionnaire alongside the PSQI and SFFFQ questionnaires as a first screen and then proceed to the remainder of the COS or certain aspects of the COS that might be most relevant to the patient (e.g.…”

Section: Discussionmentioning

confidence: 99%

A core outcome set for multimorbidity risk in individuals with cerebral palsy

McPhee

Benner

Sanvido

et al. 2022

Develop Med Child Neuro

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Aim: To: (1) investigate the importance of outcome measurement instruments (OMIs) within a core outcome set (COS) for multimorbidity (at least two chronic health conditions) risk in individuals with cerebral palsy (CP); (2) investigate the feasibility of OMIs within the COS in international clinical research settings in adolescents and adults with CP; and (3) describe the associations between the COS data and Gross Motor Function Classification System (GMFCS) levels.Method: Eighty-three individuals with CP completed a survey on health outcomes: physical behaviour, nutrition, sleep, endurance, body composition, blood pressure, blood lipids, and glucose. A cross-sectional study assessed the feasibility of the COS in 67 adolescents and adults with CP (mean age 30y, SD 15y 1mo, min-max: 14-68y, 52.2% male) at four centres. Prevalence of multimorbidity risk and associations with GMFCS levels are described.Results: Most participants rated physical behaviour, nutrition, sleep, and endurance as very important. Body composition, blood pressure, nutrition, and sleep were highly feasible since data were collected in 88% or more participants who consented to having the assessments. Physical behaviour, cardiorespiratory endurance, and blood draws were collected in less than 60% of participants. Total time sedentary (ρ=0.53, p<0.01) and endurance (ρ=−0.46, p<0.01) were significantly associated with GMFCS level. Interpretation:The COS identified that most participants had poor sleep quality and endurance, did not have healthy diets, and showed increased sedentary behaviour. Individuals with CP valued these outcomes as most important, suggesting a need to assess these modifiable behaviours in this population. Objective measures of physical behaviour and cardiorespiratory endurance in the COS required additional personnel, time, and participant burden. We recommend that healthcare providers should perform a simpler first screen using questionnaire-based assessments and then focus the use of the remainder of the COS if required for the patient.

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“…Improving sleep can alone prove a worthwhile goal of adaptive sports in children with PIMD, given the high frequency of sleep disorders in this population and the spiralling negative effects of sleep deprivation on the children’s and families’ health and wellbeing [ 33 ]. Recent guidelines have emphasised the importance of taking into account both physical activity and sleep around-the-clock to improve the health and quality of life outcomes of children with neurological disabilities [ 34 ].…”

Section: Discussionmentioning

confidence: 99%

Parents’ Perspectives on Adaptive Sports in Children with Profound Intellectual and Multiple Disabilities

Neyroud

Newman

2021

Children

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Children with profound intellectual and multiple disabilities (PIMD) need adaptations to participate in sports and it is more difficult for them to access these activities. We investigated the effects of adaptive sports in children with PIMD as perceived by their parents. The parents answered a postal questionnaire exploring the effects of adaptive sports during the 3 days following an activity. The questionnaire explored twelve domains of children’s daily lives, such as sleep and appetite. We calculated a composite score, including all of these domains, to assess whether the children globally benefited from adaptive sports. Of the families, 27/63 responded (participation 42.9%). Four domains improved after the sports activity in an important proportion of children (improvement in 64.0% of children for wellbeing, 57.6% for mood, 56.0% for comfort and 48.1% for sleep). Among the majority of children, the other eight domains remained mostly stable. Three quarters of parents reported a globally positive effect of adapted physical activities on their child. These findings support the further development and provision of adaptive sports for children with severe neurological impairments.

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24‐hour activity for children with cerebral palsy: a clinical practice guide

Cited by 29 publications

References 31 publications

Sleep problems in children with cerebral palsy and their parents

Sleep problems in children with cerebral palsy and their parents

A core outcome set for multimorbidity risk in individuals with cerebral palsy

Parents’ Perspectives on Adaptive Sports in Children with Profound Intellectual and Multiple Disabilities

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