Development of the Wheelchair outcomes Assessment Tool for Children (WATCh):A patient-centred outcome measure for young wheelchair users

<div><p>Objective</p><p>To develop a patient-centred outcome measure (PCOM) for use with children and young people accessing National Health Service (NHS) wheelchair and posture services. Identifying and addressing outcomes of most importance to young wheelchair users (≤ 18 years) will help services maximise the benefits achievable within available resources.</p><p>Methods</p><p>A mixed-methods approach was used, involving questionnaire surveys and qualitative interviews, and building on previous work identifying how young wheelchair users define health-related quality of life (HRQoL). Framework analysis was used to analyse the interview transcripts. Survey questionnaires seeking views on the importance of a range of outcomes were completed by 21 young wheelchair users or their parents. Subsequent face-to-face interviews with 11 parents or dyads of parents and young wheelchair users explored these responses and identified novel outcomes. Interviewees also scored and recorded satisfaction levels for their key outcomes.</p><p>Results</p><p>All outcomes proposed in the survey were rated as ‘extremely important’ by at least one respondent, as were additional outcomes uncovered in the qualitative data. In consultation with the service providers and service users, the Wheelchair outcomes Assessment Tool for Children (WATCh) was developed to allow service users and providers to identify, score and monitor individual users’ most important outcomes. The final WATCh tool comprises 16 outcome options, of which service users select five to be monitored. The tool will be used to measure key outcomes identified by service users before and after wheelchair provision.</p></div

Powered mobility interventions for very young children with mobility limitations to aid participation and positive development:the EMPoWER evidence synthesis

Background One-fifth of all disabled children have mobility limitations. Early provision of powered mobility for very young children (aged < 5 years) is hypothesised to trigger positive developmental changes. However, the optimum age at which to introduce powered mobility is unknown. Objective The aim of this project was to synthesise existing evidence regarding the effectiveness and cost-effectiveness of powered mobility for very young children, compared with the more common practice of powered mobility provision from the age of 5 years. Review methods The study was planned as a mixed-methods evidence synthesis and economic modelling study. First, evidence relating to the effectiveness, cost-effectiveness, acceptability, feasibility and anticipated outcomes of paediatric powered mobility interventions was reviewed. A convergent mixed-methods evidence synthesis was undertaken using framework synthesis, and a separate qualitative evidence synthesis was undertaken using thematic synthesis. The two syntheses were subsequently compared and contrasted to develop a logic model for evaluating the outcomes of powered mobility interventions for children. Because there were insufficient published data, it was not possible to develop a robust economic model. Instead, a budget impact analysis was conducted to estimate the cost of increased powered mobility provision for very young children, using cost data from publicly available sources. Data sources A range of bibliographic databases [Cumulative Index to Nursing and Allied Health Literature (CINHAL), MEDLINE, EMBASE™ (Elsevier, Amsterdam, the Netherlands), Physiotherapy Evidence Database (PEDro), Occupational Therapy Systematic Evaluation of Evidence (OTseeker), Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO, Science Citation Index (SCI; Clarivate Analytics, Philadelphia, PA, USA), Social Sciences Citation Index™ (SSCI; Clarivate Analytics), Conference Proceedings Citation Index – Science (CPCI-S; Clarivate Analytics), Conference Proceedings Citation Index – Social Science & Humanities (CPCI-SSH; Clarivate Analytics), Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects (DARE), NHS Economic Evaluation Database (NHS EED), Health Technology Assessment (HTA) Database and OpenGrey] was systematically searched and the included studies were quality appraised. Searches were carried out in June 2018 and updated in October 2019. The date ranges searched covered from 1946 to September 2019. Results In total, 89 studies were included in the review. Only two randomised controlled trials were identified. The overall quality of the evidence was low. No conclusive evidence was found about the effectiveness or cost-effectiveness of powered mobility in children aged either < 5 or ≥ 5 years. However, strong support was found that powered mobility interventions have a positive impact on children’s movement and mobility, and moderate support was found for the impact on children’s participation, play and social interactions and on the safety outcome of accidents and pain. ‘Fit’ between the child, the equipment and the environment was found to be important, as were the outcomes related to a child’s independence, freedom and self-expression. The evidence supported two distinct conceptualisations of the primary powered mobility outcome, movement and mobility: the former is ‘movement for movement’s sake’ and the latter destination-focused mobility. Powered mobility should be focused on ‘movement for movement’s sake’ in the first instance. From the budget impact analysis, it was estimated that, annually, the NHS spends £1.89M on the provision of powered mobility for very young children, which is < 2% of total wheelchair service expenditure. Limitations The original research question could not be answered because there was a lack of appropriately powered published research. Conclusions Early powered mobility is likely to have multiple benefits for very young children, despite the lack of robust evidence to demonstrate this. Age is not the key factor; instead, the focus should be on providing developmentally appropriate interventions and focusing on ‘movement for movement’s sake’. Future work Future research should focus on developing, implementing, evaluating and comparing different approaches to early powered mobility. Study registration This study is registered as PROSPERO CRD42018096449. Funding This project was funded by the National Institute for Health Research (NIHR) Health Technology programme and will be published in full in Health Technology Assessment; Vol. 24, No. 50. See the NIHR Journals Library website for further project information