Public Release: 

Neurodisabled children to have a say in care

The Peninsula College of Medicine and Dentistry

An exciting new study that will help put children with neurodisabilites at the centre of evaluating their own care has received almost a quarter of a million pounds (£250,00) in funding. The CHildren's oUtcome Measurement Study (CHUMS) will assess how to capture the views and experiences of children with neurodisability and their families in order to measure the outcomes of the NHS care they receive.

The CHUMS project, led by researchers from the Peninsula College of Medicine and Dentistry (PCMD), has received the funding from the National Institute of Health Research (NIHR) Health Services Research programme (HSR). Co-investigators in the project are the Council for Disabled Children, researchers at the Universities of York, Leeds and Oxford, NHS paediatricians, and parents of disabled children.

This study comes at an important time for the healthcare of children with neurodisabilities as the NHS changes how it delivers care and measures outcomes. To make sure the views of children and their families are included, the CHUMS project will assess the best ways to measure the outcomes of the NHS care they receive.

To help make sure Patient Reported Outcome Measurements (PROMS) work for children with neurodisabiilities and their families, the CHUMS study will:

  • Ask children and parents whether current questionnaires measure what they think is important
  • Assess if existing outcomes questionnaires are accurate and reliable.
  • Investigate if the outcomes that children and parents think are important match those of health professionals.

The research will also look at how disabled children and young people can report their own opinions, particularly exploring how technology can be used to support this.

Dr. Chris Morris, Senior Research Fellow at the Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) at PCMD emphasises the importance of the CHUMS work in the context of the changing NHS. "It is vital for the NHS to measure how services and treatments impact of the health of disabled children. Families and health professionals need to have a shared vision for what the NHS is seeking to achieve in terms of improving the health of disabled children. Our study will gather the views of children, parents and professionals to examine to what extent existing patient reported outcome measures could be used to measure health in this context, and make recommendations to inform the development of the NHS Outcomes Framework."

Amanda Allard, Principal Officer for Health at the Council for Disabled Children believes "capturing the views of disabled children is a critical step which has the potential to drive changes in the health service and improve disabled children and young people's health outcomes."

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For More information on the Peninsula Cerebra Research Unit for Childhood Disability Research (PenCRU) and their involvement in the CHUMS study please click here: http://www.pencru.org/project_chums.php

Link to the CHUMS project on the NIHR HSR Programme website www.hsr.nihr.ac.uk/projects/10_2002_16.asp

* For the purpose of the CHUMS study neourdisability is a classification of Neurological impairments that relate to the central nervous system comprised of the brain and spinal cord, such as cerebral palsy, epilepsy and autism.

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