A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study
File(s)
Published version
Author(s)
Type
Journal Article
Abstract
Background
Outcome measurement is pivotal to person-centred assessment, quality improvement and research. Children and young people with life-limiting and -threatening illness have high needs and service use, yet there is a lack of evidence for interventions and care models. Efforts to strengthen paediatric palliative care (PPC) services has been hampered by the lack of an appropriate outcome measure.
Objective
To determine the validity, reliability, measurement invariance, responsiveness, acceptability, and interpretability properties of the novel Children’s Palliative care Outcome Scale (C-POS).
Methods
We recruited children (0–17 years) with life-limiting/life threatening conditions and their families in Kenya, Uganda and South Africa. Using C-POS repeated measurement using over four timepoints. We assessed: 1) construct validity (structural properties, discriminant validity, known groups validity, measurement invariance, differential item functioning by country), 2) reliability (internal consistency and test re-test), 3) responsiveness, 4) acceptability (time to complete) and 5) interpretability.
Results
We recruited a cohort of 434 children (response rate 94%). Of these, 302 participated in the repeated measures component and 279 (92%) completed four datapoints.
We found evidence for face and content validity as the C-POS items mapped on to themes developed from qualitative interviews, including: pain and other symptoms, pyscho-social well-being, and family wellbeing that matter to children and their families. We confirmed: 1) the two-factor structure (child and family subscales). We also confirmed discriminant and known groups validity, as well as construct equivalence for the child self-report and proxy versions. Controlling for age, we found no differential item functioning by country setting. 2)The sub-scale internal consistency was moderate, given the multi-dimensional nature of the C-POS self and proxy report versions omega scores (0.67 and 0.73, respectively). The test characteristic curve information confirmed the moderate internal subscale consistency scores between 0.3- 0.9 for the proxy version and 0.3–0.5 for the self-report version. Test–retest reliability was acceptable for all items, with weighted kappa range for scores: self-report (0.43–0.57) and proxy version (0.35–0.64) and family items (0.51–0.71). 3)Responsiveness was demonstrated, except for the feeding item. 4)Median completion time at the last visit was 10 min for both versions with minimal missing data. 5)The minimum important difference was 3 for the self and proxy report versions on a scale of 0–30 and 4 for the child and family scale on a scale of 0–55.
Conclusions and relevance
The C-POS has good psychometric properties. To further improve the measure, we identified items for potential removal, conceptual gaps that should be addressed and domains for which developmental age-appropriate items are needed. C-POS has potential to evaluate and improve person-centred children’s palliative care in research and routine clinical practice.
Outcome measurement is pivotal to person-centred assessment, quality improvement and research. Children and young people with life-limiting and -threatening illness have high needs and service use, yet there is a lack of evidence for interventions and care models. Efforts to strengthen paediatric palliative care (PPC) services has been hampered by the lack of an appropriate outcome measure.
Objective
To determine the validity, reliability, measurement invariance, responsiveness, acceptability, and interpretability properties of the novel Children’s Palliative care Outcome Scale (C-POS).
Methods
We recruited children (0–17 years) with life-limiting/life threatening conditions and their families in Kenya, Uganda and South Africa. Using C-POS repeated measurement using over four timepoints. We assessed: 1) construct validity (structural properties, discriminant validity, known groups validity, measurement invariance, differential item functioning by country), 2) reliability (internal consistency and test re-test), 3) responsiveness, 4) acceptability (time to complete) and 5) interpretability.
Results
We recruited a cohort of 434 children (response rate 94%). Of these, 302 participated in the repeated measures component and 279 (92%) completed four datapoints.
We found evidence for face and content validity as the C-POS items mapped on to themes developed from qualitative interviews, including: pain and other symptoms, pyscho-social well-being, and family wellbeing that matter to children and their families. We confirmed: 1) the two-factor structure (child and family subscales). We also confirmed discriminant and known groups validity, as well as construct equivalence for the child self-report and proxy versions. Controlling for age, we found no differential item functioning by country setting. 2)The sub-scale internal consistency was moderate, given the multi-dimensional nature of the C-POS self and proxy report versions omega scores (0.67 and 0.73, respectively). The test characteristic curve information confirmed the moderate internal subscale consistency scores between 0.3- 0.9 for the proxy version and 0.3–0.5 for the self-report version. Test–retest reliability was acceptable for all items, with weighted kappa range for scores: self-report (0.43–0.57) and proxy version (0.35–0.64) and family items (0.51–0.71). 3)Responsiveness was demonstrated, except for the feeding item. 4)Median completion time at the last visit was 10 min for both versions with minimal missing data. 5)The minimum important difference was 3 for the self and proxy report versions on a scale of 0–30 and 4 for the child and family scale on a scale of 0–55.
Conclusions and relevance
The C-POS has good psychometric properties. To further improve the measure, we identified items for potential removal, conceptual gaps that should be addressed and domains for which developmental age-appropriate items are needed. C-POS has potential to evaluate and improve person-centred children’s palliative care in research and routine clinical practice.
Date Issued
2025-04-21
Date Acceptance
2025-02-18
Citation
Health and Quality of Life Outcomes, 2025, 23
ISSN
1477-7525
Publisher
BMC
Journal / Book Title
Health and Quality of Life Outcomes
Volume
23
Copyright Statement
© The Author(s) 2025. Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/40259305
PII: 10.1186/s12955-025-02346-2
Subjects
Africa
Children
Outcome measurement
Paediatric palliative care
Humans
Palliative Care
Child
Male
Female
Adolescent
Child, Preschool
Reproducibility of Results
Infant
Uganda
Outcome Assessment, Health Care
Psychometrics
South Africa
Kenya
Infant, Newborn
Surveys and Questionnaires
Patient-Centered Care
Publication Status
Published
Coverage Spatial
England
Article Number
41
Date Publish Online
2025-04-21