Person-centred care is a core health value of modern health care. The overarching aim of the Children's Palliative Care Outcome Scale (C-POS) is to develop and validate a person-centred outcome measure (PCOM) for children, young people (CYP) and their families affected by life-limiting and life-threatening conditions (LLLTC). A recent systematic review has highlighted that no measures suitable for use in this population currently exist. In addition, the development of such a measure has been highlighted as an international research priority. This novel study will draw together a unique multidisciplinary collaboration and seek to engage children within the research process, rather than relying on proxy data. Currently, children and young people are often neglected in the research process and this study hopes to change this.
The C-POS study addresses a current gap in both methods and evidence: repeated reviews and policies have called for scientific advancement to develop, validate and implement PCOMs for CYP and their families facing LLLTC. Currently, no valid tool exists, due to the complexities of self-report among children who often have profound communication difficulties, as well as sensitivities around the subject matter, and lack of evidence on their symptoms and concerns. Therefore, this population has so far been neglected in terms of research activity and evidence.