C-POS aims to develop, validate, and implement a person- and family-centred outcome measure that can be used by children and young people and their families affected by life-limiting and life-threatening conditions. The study will identify children and young people, family, professional, and commissioner priority concerns and outcomes in paediatric palliative care, which will be used to inform item generation and initial measure development. Through cognitive interviewing initial C-POS versions will be revised. The validation process further aims to test measures for comprehensibility, acceptability, feasibility, reliability, validity, and responsiveness. Lastly, the project aims to move towards implementation of C-POS in paediatric palliative care practice, including development of guidance for C-POS implementation, and adaptation of the existing POS translation protocol to be suitable for the C-POS.

C-POS uses a mixed-methods approach, including methods such as semi-structured interviews, cognitive interviewing, a Delphi survey, and self-report surveys. C-POS is an ambitious study that, for the first time, will enable the measurement of person-centred outcomes of paediatric palliative care. This will be a turning point in the scientific study of a hitherto neglected group. 

Our steering group is vital in directing our progress and consists of an expert group of researchers, clinicians, medical ethicists and patient and public involvement members. In addition to the two core patient and public members, we have a vital partnership with ‘Generation R’, the Great Ormond Street Young People’s Advisory Group, who have supported us in all phases of C-POS to date.

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.

Once implemented in the UK, existing online POS translation protocol and implementation guidance will be adapted for wider European implementation of the novel C-POS.