C-POS aims to develop, validate, and implement a person- and family-centred outcome measure that can be used by CYP and their families affected by LLLTC. The study will identify CYP, family, professional and commissioner priority concerns and outcomes in paediatric palliative care, which will be used to inform item generation and initial measure development.
The C-POS will be the first fully validated children and family centred outcome measure for use in paediatric palliative care. The study brings together families, researchers, health and social care professionals and champions children’s voices in the research, rather than relying on proxy data. The tool will be implemented into routine clinical practice which if used regularly to measure and document change in patient’s status, can inform and improve care for children and young people with life-limiting and life-threatening illnesses.