A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study

Eve Namisango; Fliss E M Murtagh; Katherine Bristowe; Julia Downing; Richard A Powell; Mackuline Atieno; Margaret Sandham; Zipporah Ali; Michelle Meiring; Faith N Mwangi-Powell; Melanie Abbas; Lorna K Fraser; Irene J Higginson; Richard Harding

doi:10.1186/s12955-025-02346-2

A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study

Eve Namisango, Fliss E M Murtagh, Katherine Bristowe, Julia Downing, Richard A Powell, Mackuline Atieno, Margaret Sandham, Zipporah Ali, Michelle Meiring, Faith N Mwangi-Powell, Melanie Abbas, Lorna K Fraser, Irene J Higginson, Richard Harding

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

Research output: Contribution to journal › Article › peer-review

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.

Original language	English
Article number	41
Pages (from-to)	41
Journal	Health and quality of life outcomes
Volume	23
Issue number	1
DOIs	https://doi.org/10.1186/s12955-025-02346-2
Publication status	Published - 21 Apr 2025

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Namisango, E., Murtagh, F. E. M., Bristowe, K., Downing, J., Powell, R. A., Atieno, M., Sandham, M., Ali, Z., Meiring, M., Mwangi-Powell, F. N., Abbas, M., Fraser, L. K., Higginson, I. J., & Harding, R. (2025). A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study. Health and quality of life outcomes, 23(1), 41. Article 41. https://doi.org/10.1186/s12955-025-02346-2

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title = "A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study",

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.",

author = "Eve Namisango and Murtagh, {Fliss E M} and Katherine Bristowe and Julia Downing and Powell, {Richard A} and Mackuline Atieno and Margaret Sandham and Zipporah Ali and Michelle Meiring and Mwangi-Powell, {Faith N} and Melanie Abbas and Fraser, {Lorna K} and Higginson, {Irene J} and Richard Harding",

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doi = "10.1186/s12955-025-02346-2",

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Namisango, E , Murtagh, FEM , Bristowe, K, Downing, J, Powell, RA, Atieno, M, Sandham, M, Ali, Z, Meiring, M, Mwangi-Powell, FN, Abbas, M, Fraser, LK , Higginson, IJ & Harding, R 2025, 'A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study', Health and quality of life outcomes, vol. 23, no. 1, 41, pp. 41. https://doi.org/10.1186/s12955-025-02346-2

TY - JOUR

T1 - A novel child-centred core palliative care outcome measure for use in clinical practice and research

T2 - findings from a multinational validation study

AU - Namisango, Eve

AU - Murtagh, Fliss E M

AU - Bristowe, Katherine

AU - Downing, Julia

AU - Powell, Richard A

AU - Atieno, Mackuline

AU - Sandham, Margaret

AU - Ali, Zipporah

AU - Meiring, Michelle

AU - Mwangi-Powell, Faith N

AU - Abbas, Melanie

AU - Fraser, Lorna K

AU - Higginson, Irene J

AU - Harding, Richard

PY - 2025/4/21

Y1 - 2025/4/21

N2 - 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.

AB - 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.

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DO - 10.1186/s12955-025-02346-2

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SN - 1477-7525

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A novel child-centred core palliative care outcome measure for use in clinical practice and research: findings from a multinational validation study

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