Linking cerebral palsy upper limb measurements to the international classification of functioning disability and health

Background: Intervention studies describe outcomes as meas­uring specific domains of the International Classification of Functioning, Disability and Health (ICF). However, the same measure may be described by different authors as assessing different domains, resulting in considerable confusion and inconsistent reporting of outcomes. Objective: To systematically link the scored items from the Melbourne Assessment of Unilateral Upper Limb Function, Quality of Upper Extremity Skills Test and Assisting Hand Assessment to domain(s) of the ICF. Methods: The meaningful concept for each scored item was defined. Using ICF linking rules, the concepts were assigned ICF codes to determine the outcome’s overall domain of measurement. Results: The Melbourne Assessment predominantly evaluates concepts in the body function domain. Coding of the Quality of Upper Extremity Skills Test indicated that dissociated movement, weight-bearing and protective extension predominantly measure concepts in the body function domain. Grasp was the only domain where concepts were coded in both the body function and activity domains. The Assisting Hand Assessment was the only measure where the majority of items assessed concepts in the activity domain. Conclusion: Measures of upper limb function can be categorized according to ICF domains. These findings should resolve confusion surrounding the classification of these measures and provide a reference for reporting the impact of intervention

Participation as a means-implications for intervention reasoning

IntroductionThe increased focus among researchers and professionals on participation as an explicit intervention outcome has prompted a paradigm shift in both thought and practice. However, much research centers on altering participation outcomes in specific life situations and stages. This discussion paper considers “participation as a means” in pediatric rehabilitation and special education interventions, emphasizing its role in achieving lasting outcomes.MethodThis paper uses a Venn diagram approach to consider relations between three core concepts—participation, intervention, and outcomes—and their intersection. The paper's central theme revolves around the intersection of these concepts, wherein participation serves as a means to achieve enduring participation outcomes within the realms of rehabilitation and special education. The discussion is supported by contemporary empirical work and from literature identified in two recent scoping reviews focusing on the intervention process.ResultsAchieving enduring participation outcomes through participation in the intervention process necessitates creating a learning experience, with children and families actively participating in every step: identifying participation issues, seeking explanations, prioritizing intervention goals, selecting methods, implementing interventions, and evaluating the process and outcomes.DiscussionThis structured approach supports professionals and researchers to foster the skills and capacity required for lasting participation outcomes for children with impairments

Evaluation of an intensive voice treatment to reduce anterior drooling in children with cerebral palsy : Protocol for a concurrent multiple-baseline, single case experimental design study

Anterior drooling is common in children with cerebral palsy (CP) and poses significant risks to the child's health. Causes of drooling include oro-motor dysfunction, inefficient swallowing and reduced sensation in the orofacial musculature. Behavioural interventions are frequently recommended to reduce drooling; however, this is in the absence of high-quality research evidence. This paper describes a protocol for evaluating the effectiveness of the Lee Silverman Voice Treatment LOUD (LSVT LOUD®) in reducing drooling; and optimising speech and swallowing in a group of children with CP. A structured and systematic visual analysis supplemented with statistical analyses will be used to analyse the data. The risk of bias in n-of-1 trials (RoBiNT) Scale [1] guided the design and implementation of the study

The measurement of visual ability in children with cerebral palsy : A systematic review

AIM To identify and evaluate measures of visual ability utilised with children with cerebral palsy (CP). METHOD Eight databases were searched for measures of visual ability. Key selection criteria for measures were: (1) use with children with CP, and (2) focus of visual ability measurement at Activities and Participation domain of the International Classification of Functioning, Disability and Health (ICF). The Consensus-based Standards for the Selection of Measurement Instruments (COSMIN) Checklist was used to assess psychometric properties. RESULTS From 6763 papers retrieved, 25 were relevant and 19 measures of visual ability were identified. Only ten measures were supported with evidence of validity or reliability. No discriminative measure analogous to existing CP functional classification systems was found. No outcome measure valid for evaluation of visual abilities of children with CP was found. INTERPRETATION Vision impairment is recognised as relevant to the functioning of children with CP, however measurement of vision is most often focused at Body Function levels, e.g. visual acuity. Measuring visual abilities in the Activities and Participation domain is important in considering how a child with CP functions in vision-related activities. The lack of psychometrically strong measures for visual ability is a gap in current clinical practices and research

Supports and barriers to implementation of routine clinical assessment for children with cerebral palsy: A mixed-methods study

Purpose: The purpose of this study is to investigate supports and barriers to evidence-based routine clinical assessment of children with cerebral palsy. Method: This mixed methods study included physiotherapists, occupational therapists and speech pathologists providing services to children with cerebral palsy (3–18 years) within five organizations across Australia. Four organizations initiated standardized routine clinical data collection (Commencing organizations), and one had previously mandated routine assessment (Comparison organization). Participants completed the Supports and Barriers Questionnaire (n = 227) and participated in focus groups (n = 8 groups, 37 participants). Quantitative data were summarized descriptively, qualitative data were analyzed thematically and comparisons between organizations assessed. Results: Organizational structures, resources, therapists within organizations, assessment tools, and children and families were, on average, viewed as supportive of routine clinical assessment. There were no differences between the Comparison and Commencing organizations except ‘therapists within the organization’ were viewed as more supportive by the Commencing organizations (p = 0.037). Five themes were derived from qualitative analyzes: motivation to adopt routine clinical assessment; acquiring and utilizing expertise; ensuring effective ongoing communication; availability and distribution of resources; and therapist perceptions of child and family wishes. Conclusions: Organizations experience challenges to effective and sustained implementation of routine clinical assessment. Adequate resourcing and positive, clear communication were perceived as critical for success

How can we reach long-lasting inclusive participation for all?: A vision for the future

In 2022, an international conference was held focusing on 'participation'. We shared current evidence, identified knowledge gaps and worked together to understand what new knowledge and community and practice changes were needed. This brief communication is a summary of the conference delegates' discussions. We present the key assumptions we make about participation and propose what is needed to create change for societies, communities, families and individuals. While we have some robust evidence to support participation approaches, more is needed, and it is everyone's responsibility to build an inclusive society where participation for all is the reality

Setting an agenda for disability research in Australia: organisation-led and targeted consultation report

This report presents the results of the Phase 2b consultation conducted with 974 individuals from 21 non-government organisations (NGOs), including service providers and disabled peoples’ organisations (DPOs), the First Nations-focused National Disability Research Agenda survey and online focus groups and in-depth interviews with people with augmentative and alternative communication needs. It is part of multi-phase research agenda setting exercise that has been conducted to understand existing disability research in Australia and consult with the disability sector to understand their priorities for disability research. This research was funded by the National Disability Research Partnership (NDRP) to underpin their development of an agenda for Australian disability research over the next decade

Modified constraint-induced movement therapy or bimanual occupational therapy following injection of Botulinum toxin-A to improve bimanual performance in young children with hemiplegic cerebral palsy: a randomised controlled trial methods paper

<p>Abstract</p> <p>Background</p> <p>Use of Botulinum toxin-A (BoNT-A) for treatment of upper limb spasticity in children with cerebral palsy has become routine clinical practice in many paediatric treatment centres worldwide. There is now high-level evidence that upper limb BoNT-A injection, in combination with occupational therapy, improves outcomes in children with cerebral palsy at both the body function/structure and activity level domains of the International Classification of Functioning, Disability and Health. Investigation is now required to establish what amount and specific type of occupational therapy will further enhance functional outcomes and prolong the beneficial effects of BoNT-A.</p> <p>Methods/Design</p> <p>A randomised, controlled, evaluator blinded, prospective parallel-group trial. Eligible participants were children aged 18 months to 6 years, diagnosed with spastic hemiplegic cerebral palsy and who were able to demonstrate selective motor control of the affected upper limb. Both groups received upper limb injections of BoNT-A. Children were randomised to either the modified constraint-induced movement therapy group (experimental) or bimanual occupational therapy group (control). Outcome assessments were undertaken at pre-injection and 1, 3 and 6 months following injection of BoNT-A. The primary outcome measure was the Assisting Hand Assessment. Secondary outcomes included: the Quality of Upper Extremity Skills Test; Pediatric Evaluation of Disability Inventory; Canadian Occupational Performance Measure; Goal Attainment Scaling; Pediatric Motor Activity Log; modified Ashworth Scale and; the modified Tardieu Scale.</p> <p>Discussion</p> <p>The aim of this paper is to describe the methodology of a randomised controlled trial comparing the effects of modified constraint-induced movement therapy (a uni-manual therapy) versus bimanual occupational therapy (a bimanual therapy) on improving bimanual upper limb performance of children with hemiplegic cerebral palsy following upper limb injection of BoNT-A. The paper outlines the background to the study, the study hypotheses, outcome measures and trial methodology. It also provides a comprehensive description of the interventions provided.</p> <p>Trial Registration</p> <p>ACTRN12605000002684</p