Developing a new measure for children’s palliative care
3rd February 2025
Doctors, researchers, and other healthcare professionals want to create a better way to measure the well-being of children with life-limiting conditions and their families. This is challenging because every child’s needs are different. It is also important to include children’s voices in the process. A research team based at the Cicely Saunders Institute has embarked on a project to improve children’s palliative care.
Their goal was to develop C-POS:UK, a tool to assess the quality of life and key concerns of these children and their families. Researchers used a step-by-step approach, gathering input from children, parents, and experts.
How was C-POS:UK developed?
- Interviews: 106 people shared their experiences, including physical, emotional, social, and practical challenges.
- Review of existing tools: Researchers examined how similar measures are designed and what works best for different age groups.
- Survey for consensus: Experts, parents, and children shared their views on what should be included in the new tool.
- Expert discussion: 22 professionals helped create different versions of C-POS:UK, tailored for different ages and abilities.
- Testing: 48 people tested the tool to ensure it was clear and easy to use, looing at comprehension, comprehensiveness and acceptability.
- Validation: Psychometric validation is ongoing.
What’s next?
C-POS:UK is now being tested to confirm its effectiveness. Once validated, it will be used to improve palliative care for children, ensuring their needs and voices are properly considered.
Braybrook D, Coombes L, Harðardóttir D, Scott HM, Bristowe K, Ellis-Smith C, Roach A, Ramsenthaler C, Bluebond-Langner M, Downing J, Murtagh FEM, Fraser LK, Harding R. Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children’s Palliative Care Outcome Scale (C-POS:UK). Palliat Care Soc Pract. 2024 Dec 17;18:26323524241303537. doi: 10.1177/26323524241303537. PMID: 39691593; PMCID: PMC11650473.