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.
Helen & Douglas House and several other centers will shortly be ‘testing’ this scale within our clinical practice, with the families that we support. The study is hosted at King’s College and funded by the NIHR.
Start end date: 1st September 2018 – 28th February 2023