Multimillion pound rehabilitation trial for children with neurodisability

Newcastle is leading a clinical trial to assess how parents and professionals can support young children with neurodisability to develop independence in everyday self-care tasks.


The Children’s Early Self-Care Support (CHESS) trial has been made possible thanks to £2.3million funding from the National Institute for Health and Care Research (NIHR). It is set to be among the largest rehabilitation studies ever undertaken, as it spans 40 NHS organisations and will involve 960 children and their families.


The trial team is led from Newcastle University, alongside Northumbria University and Newcastle Hospitals NHS Foundation Trust – all of which are part of Newcastle Health Innovation Partners (NHIP), the Academic Health Science Centre in the North East of England. Sheffield Children’s NHS Foundation Trust is the lead NHS organisation for the trial.  Other partners include the University of Aberdeen, Bangor University, London School of Hygiene and Tropical Medicine, Pennine Care NHS Foundation Trust, and the Peninsula Childhood Disability Research Unit (PenCRU) at the University of Exeter Medical School.


It is estimated that around four per cent of children in the UK have neurodisability, many of whom have difficulties with self-care. Whilst a number of these children can achieve self-care levels close to their typically developing peers, this often requires significant support from parents and NHS therapists. There is currently little evidence about what support works best, no national guidelines, and no evidence about cost-effectiveness to inform decision making. As a result, the support that children and families receive is variable. The trial will therefore gather much needed evidence on effective interventions to support children, parents, and professionals.



Dr Niina Kolehmainen from Newcastle University is leading the trial team. She said: “CHESS is a landmark trial as the team combines experts with decades of research into neurodisability, self-care and family-centred practice.


“The idea for CHESS comes directly from children, families and therapists – who have told us that their biggest priority is better support for early self-care and independence. So we came together to develop a programme of research, which now culminated in the CHESS trial.


“Most children with neurodisability require a lot of support from parents and caregivers, who often describe family life as stressful. Timely self-care support for the children, tailored to the needs of the family, and provided by occupational therapists, physiotherapists, speech and language therapists, or health visitors, may have substantial benefits for both the child and parent.”


Clinical trials improve health outcomes and the quality of care for professionals and patients involved in them. The CHESS team seeks to open these opportunities to regions and patients who currently have limited opportunities to participate in research. The trial methods to support this will be led from the Centre for Healthcare Randomised Trials at the University of Aberdeen and the Implementation and Innovation Research group at Northumbria University.


David Burn, NHIP Director, said: “It is great to see three of our NHIP partners involved in the CHESS trial, as this groundbreaking work will make such a huge difference for families. NHIP brings together partners in research to help reduce health inequalities and improve health outcomes, and this project is a perfect example of how much we can achieve together when we work collaboratively.”


Joanne Marshall, Principal Physiotherapist at Newcastle Hospitals, said: “We are proud to play a part in this national trial, which aims to improve the lives of children with neurodisability and their families.”


Samantha Armitage, Occupational Therapist at Sheffield Children’s NHS Foundation Trust, said: “Self-care is a priority for children and young people. Our CHESS trial seeks to understand how therapists can best support young children to achieve the most meaningful self-care outcomes in daily life. I am incredibly proud to be involved in this work and it’s exciting that, with NIHR support, we can look at how effective and cost-effective therapy support is for self-care. The trial will provide us with much needed evidence for practice.”


The trial is developing partnerships with families affected by neurodisability to ensure that involvement of parents, carers, and children is given the highest priority.  Chris Morris, Professor of Child Health Research at the University of Exeter Medical School said: “We’re delighted to be a partner in this ground-breaking clinical trial focusing on a top priority in childhood disability research. Parent carers in our PenCRU Family Faculty will be involved in co-designing the trial to ensure it is accessible to families.”


Another partner organisation is Unique, a national charity supporting children and families living with rare chromosome and gene disorders. Sarah Wynn, CEO of Unique commented: “Unique is delighted to be involved in a trial of this scale and scope. The long-term outcomes for individuals and their families as a result of the trial is potentially groundbreaking.”  To design the trial and secure the funding, the trial team has also been working closely with LS29, a parent-led charity and special needs support group in West Yorkshire.


There are three industry partners participating in the trial: Permobil, TinyTrax, and Meru. Karin Leire, VP Scientific and Medical Affairs at Permobil said: “Powered mobility can provide support for young children by supporting them with independent movements, which are critical for the development of the child – and this in turn links to self-care.”


Dr Gillian Ward, Head of Research and Innovation at the Royal College of Occupational Therapists, said: “Our warmest congratulations to the team. This research has the potential to make a huge difference to children with neurodisability and their families. Independence in self-care is a major occupational therapy outcome and it is important to us that evidence about self-care interventions for children is further advanced through national research. We are always looking for ways to support occupational therapists to do their jobs even better and help them improve people’s lives – this trial is a fantastic example of that.”

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