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)

Braybrook, Debbie; Coombes, Lucy; Harðardóttir, Daney; Scott, Hannah M.; Bristowe, Katherine; Ellis-Smith, Clare; Roach, Anna; Ramsenthaler, Christina; Bluebond-Langner, Myra; Downing, Julia; Murtagh, Fliss E.M.; Fraser, Lorna K.; Harding, Richard

Abstract

Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital. Objective: To develop C-POS:UK (Children’s Palliative Care Outcome Scale, UK), a person-centred outcome measure (PCOM) for children with life-limiting conditions and their families, and to test its psychometric properties. Design: Sequential mixed-methods approach to PCOM development, guided by Rothrock’s measure development process and COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology. Methods: (i) Qualitative interviews about priority symptoms and concerns, with embedded exploration of measure design for children with life-limiting conditions; (ii) systematic review of measure design for children; (iii) modified Delphi survey, and consultation with children, on priority items for new measure; (iv) expert item generation meeting to develop C-POS:UK; (v) cognitive testing to refine C-POS:UK; (vi) psychometric validation. Results: (i) 106 participants described physical, emotional/psychological, spiritual/existential, social and practical concerns. Measure design was discussed by 79 participants comprising preferred response format, recall period and measure administration for children with life-limiting conditions; (ii) systematic review highlighted need for: different versions of measure accounting for child’s developmental stage and cognitive ability; parent/carer involvement as proxies for very young children; and testing to clarify recall periods and response formats at different developmental stages; (iii) Delphi survey: 82 participants (in the first round), with a move towards consensus, but with some differing priorities in stakeholder groups: professionals prioritised physical symptoms, parents prioritised psychosocial and practical matters, while consulted children prioritised normality; (iv) 22 experts contributed to item generation meeting, resulting in five versions of C-POS:UK accounting for child’s developmental stage and cognitive ability, and proxy involvement; (v) 48 participants cognitively tested initial C-POS:UK, informing comprehension, comprehensiveness and acceptability; (vi) psychometric validation is ongoing. Conclusion: A sequential approach informed by Rothrock and COSMIN has supported development of the first version of C-POS:UK. Psychometric validation is underway and will be followed by implementation planning.

Citation

Braybrook, D., Coombes, L., Harðardóttir, D., Scott, H. M., Bristowe, K., Ellis-Smith, C., Roach, A., Ramsenthaler, C., Bluebond-Langner, M., Downing, J., Murtagh, F. E., Fraser, L. K., & Harding, R. (2024). 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). Palliative Care and Social Practice, 18, https://doi.org/10.1177/26323524241303537

• Journal Article Type: Article
• Acceptance Date: Nov 19, 2024
• Publication Date: Jan 1, 2024
• Deposit Date: Dec 31, 2024
• Publicly Available Date: Jan 3, 2025
• Journal: Palliative Care and Social Practice
• Print ISSN: 2632-3524
• Electronic ISSN: 2632-3524
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 18
• DOI: https://doi.org/10.1177/26323524241303537
• Public URL: https://hull-repository.worktribe.com/output/4970529