Parent-Reported PEDI-CAT Mobility and Gross Motor Function in Infants With Cerebral Palsy

Scott, Kimberley; Lewis, Jessica; Pan, Xueliang; Heathcock, Jill C.

doi:10.1097/pep.0000000000000801

Cited by 3 publications

(3 citation statements)

References 39 publications

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“…Participation will be evaluated using the PEDI-CAT, 74 the COPM 52 and the YC-PEM. 53 Based on different children’s activities, the YC-PEM is a parents-filled questionnaire evaluating the level of participation and the quality of the environment across three settings: home, daycare/preschool and community.…”

Section: Discussionmentioning

confidence: 99%

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Baby HABIT-ILE intervention: study protocol of a randomised controlled trial in infants aged 6–18 months with unilateral cerebral palsy

Carton de Tournai,

Herman,

Gathy

et al. 2024

BMJ Open

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IntroductionResearch using animal models suggests that intensive motor skill training in infants under 2 years old with cerebral palsy (CP) may significantly reduce, or even prevent, maladaptive neuroplastic changes following brain injury. However, the effects of such interventions to tentatively prevent secondary neurological damages have never been assessed in infants with CP. This study aims to determine the effect of the baby Hand and Arm Bimanual Intensive Therapy Including Lower Extremities (baby HABIT-ILE) in infants with unilateral CP, compared with a control intervention.Methods and analysisThis randomised controlled trial will include 48 infants with unilateral CP aged (corrected if preterm) 6–18 months at the first assessment. They will be paired by age and by aetiology of the CP, and randomised into two groups (immediate and delayed). Assessments will be performed at baseline and at 1 month, 3 months and 6 months after baseline. The immediate group will receive 50 hours of baby HABIT-ILE intervention over 2 weeks, between first and second assessment, while the delayed group will continue their usual activities. This last group will receive baby HABIT-ILE intervention after the 3-month assessment. Primary outcome will be the Mini-Assisting Hand Assessment. Secondary outcomes will include behavioural assessments for gross and fine motricity, visual–cognitive–language abilities as well as MRI and kinematics measures. Moreover, parents will determine and score child-relevant goals and fill out questionnaires of participation, daily activities and mobility.Ethics and disseminationFull ethical approval has been obtained by theComité d’éthique Hospitalo-Facultaire/Université catholique de Louvain, Brussels (2013/01MAR/069 B403201316810g). The recommendations of the ethical board and the Belgian law of 7 May 2004 concerning human experiments will be followed. Parents will sign a written informed consent ahead of participation. Findings will be published in peer-reviewed journals and conference presentations.Trial registration numberNCT04698395. Registered on the International Clinical Trials Registry Platform (ICTRP) on 2 December 2020 and NIH Clinical Trials Registry on 6 January 2021. URL of trial registry record:https://clinicaltrials.gov/ct2/show/NCT04698395?term=bleyenheuft&draw=1&rank=7.

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Section: Discussionmentioning

confidence: 99%

“…Participation will be evaluated using the PEDI-CAT, 74 the COPM 52 and the YC-PEM. 53 Based on different children's activities, the YC-PEM is a parents-filled questionnaire…”

Section: Participation Assessmentsmentioning

confidence: 99%

Baby HABIT-ILE intervention: study protocol of a randomised controlled trial in infants aged 6–18 months with unilateral cerebral palsy

Carton de Tournai,

Herman,

Gathy

et al. 2024

BMJ Open

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“…The cognition domain explores the participation components for a social performance [ 6 ]. PEDI showed a concurrent validation with other scales, quantifying gross and fine motor skills [ 23 , 24 ].…”

Section: Introductionmentioning

confidence: 99%

Can Clinical Assessment of Postural Control Explain Locomotive Body Function, Mobility, Self-Care and Participation in Children with Cerebral Palsy?

Vlčkova,

Halámka,

Müller

et al. 2024

Healthcare

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Trunk control may influence self-care, mobility, and participation, as well as how children living with cerebral palsy (CP) move around. Mobility and Gross Motor performance are described over environmental factors, while locomotion can be understood as the intrinsic ontogenetic automatic postural function of the central nervous system, and could be the underlying element explaining the relationship between these factors. Our goal is to study the correlation among Trunk Control Measurement Scale (TCMS) and Pediatric Evaluation of Disability Inventory (PEDI) domains, as well as Locomotor Stages (LS). Methods: A feasibility observational analysis was designed including 25 children with CP who were assessed with these scales. Results: The strong correlation confirms higher levels of trunk control in children with better self-care, mobility and participation capacities. Strong correlations indicate also that higher LS show better levels of PEDI and TCMS domains. Conclusions: Our results suggest that more mature LS require higher levels of trunk control, benefitting self-care, mobility and social functions.

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The Charlotte Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qualitative and Delphi consensus study

et al. 2022

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ObjectiveThe appropriate management of patients with Dravet Syndrome (DS) is challenging, given the severity of symptoms and the burden of the disease for patients and caregivers. This study aimed to identify, through a qualitative methodology and a Delphi consensus-driven process, a set of recommendations for the management of DS to guide clinicians in the assessment of the clinical condition and quality of life (QoL) of DS patients, with a special focus on patient- and caregiver-reported outcomes (PROs).MethodsThis study was conducted in five phases, led by a multidisciplinary scientific committee (SC) including pediatric neurologists, epileptologists, a neuropsychologist, an epilepsy nurse, and members of DS patient advocates. In phases 1 and 2, a questionnaire related to patients' QoL was prepared and answered by caregivers and the SC. In phase 3, the SC generated, based on these answers and on a focus group discussion, a 70-item Delphi questionnaire, covering six topic categories on a nine-point Likert scale. In phase 4, 32 panelists, from different Spanish institutions and with a multidisciplinary background, answered the questionnaire. Consensus was obtained and defined as strong or moderate if ≥80% and 67–79% of panelists, respectively, rated the statement with ≥7. Phase 5 consisted of the preparation of the manuscript.ResultsThe panelists agreed on a total of 69 items (98.6%), 54 (77.14%), and 15 (21.43%) with strong and moderate consensus, respectively. The experts' recommendations included the need for frequent assessment of patient and caregivers QoL parameters. The experts agreed that QoL should be assessed through specific questionnaires covering different domains. Likewise, the results showed consensus regarding the regular evaluation of several clinical parameters related to neurodevelopment, attention, behavior, other comorbidities, and sudden unexpected death in epilepsy (SUDEP). A consensus was also reached on the instruments, specific parameters, and caregivers' education in the routine clinical management of patients with DS.ConclusionsThis consensus resulted in a set of recommendations for the assessment of clinical and QoL parameters, including PROs, related to the general evaluation of QoL, neurodevelopment, attention, behavior, other comorbidities affecting QoL, SUDEP, and QoL of caregivers/relatives and patients with DS.

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Parent-Reported PEDI-CAT Mobility and Gross Motor Function in Infants With Cerebral Palsy

Cited by 3 publications

References 39 publications

Baby HABIT-ILE intervention: study protocol of a randomised controlled trial in infants aged 6–18 months with unilateral cerebral palsy

Baby HABIT-ILE intervention: study protocol of a randomised controlled trial in infants aged 6–18 months with unilateral cerebral palsy

Can Clinical Assessment of Postural Control Explain Locomotive Body Function, Mobility, Self-Care and Participation in Children with Cerebral Palsy?

The Charlotte Project: Recommendations for patient-reported outcomes and clinical parameters in Dravet syndrome through a qualitative and Delphi consensus study

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