Dataset Information

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties.

ABSTRACT: AIM:To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection. METHOD:Five databases were searched. Instruments that quantified 'attendance' and/or 'involvement' aspects of participation according to the family of participation-related constructs were selected. Data on measurement properties were extracted and methodological quality of the studies assessed. RESULTS:Thirty-seven instruments were used to assess participation in children with ABI or CP. Of those, 12 measured attendance and/or involvement. The reliability, validity, and responsiveness of eight of these instruments were examined in 14 studies with children with ABI or CP. Sufficient measurement properties were reported for most of the measures, but no instrument had been assessed on all relevant properties. Moreover, most psychometric studies have marked methodological limitations. INTERPRETATION:Instruments to assess participation of children with ABI or CP should be selected carefully, as many available measures do not align with attendance and/or involvement. Evidence for measurement properties is limited, mainly caused by low methodological study quality. Future studies should follow recommended methodological guidelines. WHAT THIS PAPER ADDS:Twelve instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) aligned with attendance/involvement. Seven instruments have some psychometric evidence supporting their use with children with CP. For children with ABI, only the Child and Adolescent Scale of Participation has shown preliminary evidence of measurement properties.

SUBMITTER: Resch C

PROVIDER: S-EPMC7079076 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties.

Resch Christine C Van Kruijsbergen Mette M Ketelaar Marjolijn M Hurks Petra P Adair Brooke B Imms Christine C De Kloet Arend A Piskur Barbara B Van Heugten Caroline C

Developmental medicine and child neurology 20200123 4

<h4>Aim</h4>To examine which instruments used to assess participation of children with acquired brain injury (ABI) or cerebral palsy (CP) align with attendance and/or involvement constructs of participation; and to systematically review measurement properties of these instruments in children with ABI or CP, to guide instrument selection.<h4>Method</h4>Five databases were searched. Instruments that quantified 'attendance' and/or 'involvement' aspects of participation according to the family of pa ...[more]

PMID: 31975385

Similar Datasets

Project description:BackgroundSwallowing impairment (dysphagia) following brain injury can lead to life-threatening complications such as dehydration, aspiration pneumonia and acute choking episodes. In adult therapeutic practice, there is research and clinical evidence to support the use of swallowing exercises to improve swallowing physiology in dysphagia; however, the use of these exercises in treating children with dysphagia is largely unexplored. Fundamental questions remain regarding the feasibility and effectiveness of using swallowing exercises with children. This review aims to outline the published literature on exercise-based treatment methods used in the rehabilitation of dysphagia secondary to an acquired brain injury across the lifespan. This will allow the range and effects of interventions utilised to be mapped alongside differential practices between adult and child populations to be formally documented, providing the potential for discussions with clinicians about which rehabilitative interventions might be appropriate for further trial in paediatrics.MethodsThis study will use a scoping review framework to identify and systematically review the existing literature using Joanna Briggs Institute (JBI) and Preferred Reporting Items for Systematic Reviews (PRISMA) scoping review guidelines. Electronic databases (MEDLINE, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Allied and Complementary Medicine Database (AMED)), grey literature and the reference lists of key texts including systematic reviews will be searched. Information about the rehabilitation design, dosage and intensity of exercise programmes used as well as demographic information such as the age of participants and aetiology of dysphagia will be extracted. The number of articles in each area and the type of data source will be presented in a written and visual format. Comparison between the literature in adult and child populations will be discussed.DiscussionThis review is unique as it directly compares dysphagia rehabilitation in adults with that of a paediatric population in order to formally identify and discuss the therapeutic gaps in child dysphagia rehabilitation. The results will inform the next stage of research, looking into the current UK-based speech and language therapy practices when working with children with acquired dysphagia.Systematic review registrationOpen science framework osf.io/ja4dr.

Project description:ObjectiveTo examine the relation between walking performance and participation in mobility-related habits of daily life in children with cerebral palsy (CP). To date, walking outcomes in CP have been capacity-based (what a child does in structured setting). Physical activity performance (what a child really does in daily life) has been documented to affect the relation of capacity-based gross motor measures and participation.DesignCross-sectional prospective cohort study.SettingRegional pediatric specialty care centers.ParticipantsA cohort of ambulatory children with CP (N=128; age, 2 to 9y; 41% girls; 49% having hemiplegia) participated.InterventionsNot applicable.Main outcome measuresWalking performance was quantified from a 5-day sample of accelerometry data. Stride activity was summarized through the outcomes of the average number of total strides per day (independent of intensity) and the average number of total strides per day at >30 strides/min (marker of intensity). Mobility-based participation was assessed by using the Assessment of Life Habits for Children questionnaire categories of personal care, housing, mobility, and recreation. Regression models were developed controlling for sex, age, cognition, communication, pain, and body composition.ResultsThe average number of total strides per day was positively associated with the personal care, housing, mobility, and recreation Assessment of Life Habits for Children questionnaire categories (β=.34-.41, P<.001). The average number of total strides per day at >30 strides/min was associated with all categories (β=.54-.60, P<.001).ConclusionsAccelerometry-based walking activity performance is significantly associated with levels of participation in mobility-based life habits for ambulatory children with CP. Evaluation of other factors and the direction of the relation within the International Classification of Functioning, Disability and Health is warranted to inform rehabilitation strategies.

Project description:Cerebral palsy is primarily an upper motor neuron disease that results in a spectrum of progressive movement disorders. Secondary to the neurological lesion, muscles from patients with cerebral palsy are often spastic and form debilitating contractures that limit range of motion and joint function. With no genetic component, the pathology of skeletal muscle in cerebral palsy is a response to aberrant neurological input in ways that are not fully understood. This study was designed to gain further understanding of the skeletal muscle response to cerebral palsy using microarrays and correlating the transcriptional data with functional measures. Hamstring biopsies from gracilis and semitendinosus muscles were obtained from a cohort of patients with cerebral palsy (n=10) and typically developing patients (n=10) undergoing surgery. Affymetrix HG-U133A 2.0 chips (n=40) were used and expression data was verified for 6 transcripts using quantitative real-time PCR, as well as for two genes not on the microarray. Chips were clustered based on their expression and those from patients with cerebral palsy clustered separately. Significant genes were determined conservatively based on the overlap of three summarization algorithms (n=1,398). Significantly altered genes were analyzed for over-representation among gene ontologies, transcription factors, pathways, microRNA and muscle specific networks. These results centered on an increase in extracellular matrix expression in cerebral palsy as well as a decrease in metabolism and ubiquitin ligase activity. The increase in extracellular matrix products was correlated with mechanical measures demonstrating the importance in disability. These data lay a framework for further studies and novel therapies. Skeletal muscle biopsies from both the gracilis and semitendinosus were obtained during surgery for 20 pediatric subjects for affymetrix microarray analysis. We obtained a group of 10 patients undergoing medial hamstring lengthening in the cerebral palsy group and 10 patients undergoing ACL reconstruction with hamstring autograft in the control group. This provided 40 microarrays in 4 groups to analyze the effect of cerebral palsy and also differences between muscles.

Dataset Information

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties.

Publications

Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets