CDC is delighted to announce it is taking part in an exciting
new project that will help place children with neurodisabilites* at
the centre of evaluating the NHS care they receive. The
Measurement Study (CHUMS)
has received almost a quarter of a million pounds in funding and
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 andOxford, NHS paediatricians, and parents of disabled
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
- 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."
For more information on the Peninsula Cerebra Research Unit for
Childhood Disability Research (PenCRU) and their involvement in the
CHUMS project please visit http://www.pencru.org/project_chums.php
For more information on the CHUMS project on
the NIHR HSR Programme website please visit 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.