C-POS cognitive interview study
Research type
Research Study
Full title
Children’s Palliative Outcome Scale (C-POS) – cognitive interview study to determine comprehensibility, comprehensiveness and feasibility.
IRAS ID
282412
Contact name
Lucy Helen Coombes
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
0 years, 11 months, 28 days
Research summary
Children and young people (CYP) with life-limiting conditions (LLC) are living longer with more complex health care needs. It is important that health care professionals are asking these children and their parents/carers about the aspects of their life and the care they receive that are most important to them so that any areas of concern can be addressed. This can be done by using a patient-reported outcome measure (PROM). These are questionnaires measuring a patients view of their health status. Where a patient is unable to answer these questions due to their age, understanding or medical condition then someone else, such as a parent, may be asked these questions on their behalf.
This study is the second phase of a larger project aiming to develop a PROM (called C-POS) for use with CYP who have a LLC and their parents/carers. Interviews with children with LLC, health care professionals, siblings and parents have already been conducted to find out which symptoms and concerns are most important to them. The symptoms and concerns identified have then been evaluated by parents/carers of CYP with LLC and health care professionals in an online survey, and they prioritised which one should be included in our PROM. We now have version 1 of C-POS ready to test with CYP and their parents/carers. This part of the study (phase 2) aims to find out whether the questions in C-POS are understood and cognitively processed in the way the research team intend. This will be done by asking parents and children to complete the C-POS while telling us what they are thinking and why they choose the response they do as they answer the questions (called cognitive interviewing). An interviewer will ask questions while the C-POS is being completed. These interviews will be audio recorded.
REC name
London - Bloomsbury Research Ethics Committee
REC reference
21/LO/0282
Date of REC Opinion
12 May 2021
REC opinion
Further Information Favourable Opinion