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)

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

doi:10.1177/26323524241303537

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)

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

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

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.

Original language	English
Pages (from-to)	26323524241303537
Journal	Palliative Care and Social Practice
Volume	18
DOIs	https://doi.org/10.1177/26323524241303537
Publication status	Published - 17 Dec 2024

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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. M., 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, 26323524241303537. https://doi.org/10.1177/26323524241303537

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title = "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)",

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.",

author = "Debbie Braybrook and Lucy Coombes and Daney Har{\dh}ard{\'o}ttir and Scott, {Hannah M} and Katherine Bristowe and Clare Ellis-Smith and Anna Roach and Christina Ramsenthaler and Myra Bluebond-Langner and Julia Downing and Murtagh, {Fliss E M} and Fraser, {Lorna K} and Richard Harding",

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year = "2024",

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doi = "10.1177/26323524241303537",

language = "English",

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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 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, vol. 18, pp. 26323524241303537. https://doi.org/10.1177/26323524241303537

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 et al.
In: Palliative Care and Social Practice, Vol. 18, 17.12.2024, p. 26323524241303537.

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

TY - JOUR

T1 - Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions

T2 - progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK)

AU - Braybrook, Debbie

AU - Coombes, Lucy

AU - Harðardóttir, Daney

AU - Scott, Hannah M

AU - Bristowe, Katherine

AU - Ellis-Smith, Clare

AU - Roach, Anna

AU - Ramsenthaler, Christina

AU - Bluebond-Langner, Myra

AU - Downing, Julia

AU - Murtagh, Fliss E M

AU - Fraser, Lorna K

AU - Harding, Richard

PY - 2024/12/17

Y1 - 2024/12/17

N2 - 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.

AB - 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.

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U2 - 10.1177/26323524241303537

DO - 10.1177/26323524241303537

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JO - Palliative Care and Social Practice

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Braybrook D , Coombes L, Harðardóttir D, Scott HM , Bristowe K , Ellis-Smith C et al. 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. 2024 Dec 17;18:26323524241303537. doi: 10.1177/26323524241303537

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)

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