C:POS (Children's Palliative care Outcome Scale)
Research type
Research Study
Full title
C:POS (Children's Palliative care Outcome Scale)
IRAS ID
250470
Contact name
Richard Harding
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Summary of Research
Why is this research important?
The numbers of UK children born with life-limiting illness is increasing. The use of brief questions (called Patient Reported Outcome Measures or “PROMs”) helps them and their care teams identify their main problems, and their answers can be used to improve their care.What have we done already?
We spoke with families, and with their health care teams. They told us that they want a “PROM’ for these children and young people, and helped us to develop this research.What are we trying to find out?
First, what problems matter most to children, young people & families who are facing life-limiting and terminal illness?
Second, how should we design questions so that children, young people and their families can easily use them?What will we do?
In the 1st Phase of the study, we develop the questions to ask in the “PROM”.
We ask the views of children, young people and their families to develop questions that reflect what matters most, find how the questions should be asked, and how answers should be used.
In a national survey, we ask health professionals what they feel are the most important things to ask.
In individual interviews, we ask NHS funders to tell us how data can help them in supporting the right services and knowing that they work.
When we have collected all this information, we develop the “PROM” in partnership with our family representatives, researchers and health professionals.
In a 2nd later Phase (after this application) we will find out if this new PROM is accurate and reliable.Summary of Results
This study has demonstrated that children with life-limiting conditions and their families have multiple, inter-connected concerns and care needs, which span the WHO domains of palliative care (physical, psychosocial, spiritual/existential, and social/practical) as well as the domain of normality.
This study will have implications for those providing care to children and young people with life-limiting conditions by describing their specific needs and those of their families. It also has implications for researchers, demonstrating that children with a variety of conditions beyond cancer, are willing and able to participate in research about themselves and their needs and condition.
The findings from this study are being used to inform development of an child-centred outcome measure for use with those with life-limiting conditions and their families.
REC name
London - Bloomsbury Research Ethics Committee
REC reference
19/LO/0033
Date of REC Opinion
21 Jan 2019
REC opinion
Further Information Favourable Opinion