ActivePsychology & BehaviourPregnancy, Children & Inherited Conditions
Investigating the clinical and cost-effectiveness of CHildren’s Early Self-care Support in children with neurodisability: the CHESS cluster randomised controlled trial
Around 3–4% of UK children have a neurodisability that makes everyday tasks like feeding themselves or making choices at mealtimes difficult. This trial tests whether a new programme called CHESS—CHildren’s Early Self-care Support—helps these children become more independent and involved in their own care, and whether it is cost-effective for the NHS. Currently, there is no national guidance and almost no evidence on what works for improving self-care in young children with neurodisability. Parents and therapists often rely on trial and error, with no data to guide commissioning decisions. This cluster randomised trial will recruit 960 children across 40 NHS community therapy services, comparing CHESS with usual care over 12 months. The primary outcome is the child’s self-care independence, measured by a parent-reported assessment. If CHESS proves effective, it could give NHS commissioners a clear, evidence-based intervention to fund—one that reduces the burden on families and therapists while helping children gain skills essential for daily life. The embedded economic evaluation will tell funders whether the programme is worth the investment.
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RESEARCH QUESTION: Does CHildren’s Early Self-care Support (CHESS) improve self-care in young children with neurodisability and is it cost-effective compared to usual care? BACKGROUND: Caring for oneself (‘self-care’) is essential to survival. It encompasses independence (e.g. learning to feed oneself) and involvement (e.g. making choices at meal times). Estimated 3-4% of children in the UK have neurodisability, with self-care problems that are significant and common. While many can achieve self-care levels close to their typically developing peers this requires significant parent and therapy support. There is limited evidence on effective interventions , no national guidelines, and no cost-effectiveness data for commissioners. Parents, young people, and professionals agree that evidence is urgently needed. AIM: To determine the clinical and cost-effectiveness of CHESS in young children with neurodisability compared to usual care. OBJECTIVES: 1) Determine the clinical effectiveness of CHESS compared with usual care, on self-care skills and involvement for young children with neurodisability, measured at 6 and 12 months after the start of the intervention. 2) Estimate the relative efficiency of CHESS compared with usual care, in terms of self-care skills and involvement in young children with neurodisability. 3) Conduct an embedded evaluation of recruitment, intervention acceptability, and implementation to support trial delivery. METHODS: A two-arm cluster randomised controlled trial across 40 clusters (NHS organisations that provide community or outpatient therapy for children with neurodisability in the UK), with embedded economic and process evaluations, comparing CHildren’s Early Self-care Support (CHESS) with usual care. The patient population will be children with neurodisability, from age 12 months to school entry, where self-care support is indicated; and one of their parents. Clusters will be allocated in a 1:1 ratio to CHESS or usual care using covariate constrained randomisation. The primary outcome will be child’s self-care independence, measured using parent-reported Pediatric Evaluation of Disability Computer Adaptive Testing (PEDI-CAT) Activities Of Daily Living module at 12 months after start of intervention. The secondary outcomes will be self-care involvement in child-caregiver interactions, child health related quality of life, caregiver health and care-related quality of life, health and social care use, and cost for families measured at baseline, 6, 9 and/or 12 months after start of intervention. Inflating for the clustered design assuming an ICC of 0.1 and 40 clusters of size 20 has 90% power. We have assumed a drop-out of children about 15%, each cluster will recruit 24 children, a total sample size 960. All analyses will be based on the intention-to-treat principle. TIMELINES FOR DELIVERY: Start date: 1 Feb 2024. Duration: 48 months. Milestones: prefunding: regulatory approvals, site engagement; months 1-6: tailoring, set-up, authorisations; months 1-26: centre training; month 11-16: internal pilot; month 11-28: family recruitment; month 17 to 40: follow-up to 12 months after intervention; months 41-48: analysis, interpretation, reporting. DISSEMINATION & ANTICIPATED IMPACT: Results will be disseminated via scientific, service user, professional, and policy channels with focus on improving knowledge, practice and commissioning. Professional bodies and PPIE partners will co-lead on dissemination.
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