C-POS Questionnaire Study
Research type
Research Study
Full title
Children's Palliative care Outcome Scale validation
IRAS ID
310415
Contact name
Richard Harding
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
1 years, 4 months, 31 days
Research summary
Within the UK, there are estimated to be over 86,000 children and families living with a life limiting or life threatening condition, many of whom would benefit from palliative care services due to complex symptoms, social and psychological needs and the unpredictability of their condition. The number of children with LLC/LTC conditions in the UK is rising due to advances in medical care leading to slower deterioration.
The phase of research builds on the first two phases which 1) asked children, their families, their health care providers and commissioners what matters most to them; 2) we held a meeting with these stakeholders to decide which of these priority aspects of wellbeing should be the items in a brief measure to routinely assess and better support children and their families; 3) asked families and health carers which of these items are most important; 4) reviewed the evidence for how best to design questionnaires for children; 5) asked children, families and health carers to complete the questionnaires (there are different versions to meet children's needs at different stages of development) and to give us feedback on their content and format. We are now ready to move to the final stage- to ask children, families and staff to complete the measure twice to check if it measures what we intend to measure, and if it does so accurately.REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
22/LO/0684
Date of REC Opinion
29 Nov 2022
REC opinion
Further Information Favourable Opinion