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)
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 c...
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| Format: | Article |
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SAGE Publishing
2024-12-01
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| Series: | Palliative Care and Social Practice |
| Online Access: | https://doi.org/10.1177/26323524241303537 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Debbie Braybrook |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-7d3dbda50ba94408a2fe7d1d3a98f94e |
| institution | Kabale University |
| issn | 2632-3524 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Palliative Care and Social Practice |
| spelling | doaj-art-7d3dbda50ba94408a2fe7d1d3a98f94e2024-12-17T12:03:41ZengSAGE PublishingPalliative Care and Social Practice2632-35242024-12-011810.1177/26323524241303537Development 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 BraybrookLucy CoombesDaney HarðardóttirHannah M. ScottKatherine BristoweClare Ellis-SmithAnna RoachChristina RamsenthalerMyra Bluebond-LangnerJulia DowningFliss E. M. MurtaghLorna K. FraserRichard HardingBackground: 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.https://doi.org/10.1177/26323524241303537 |
| spellingShingle | 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 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 |
| 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) |
| title_full | 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) |
| title_fullStr | 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) |
| title_full_unstemmed | 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) |
| title_short | 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) |
| title_sort | 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 |
| url | https://doi.org/10.1177/26323524241303537 |
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