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Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their
Lucy Coombes1,2, Debbie Braybrook1, Daney Harðardóttir1
1King's College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, London, UK.
Insights
Cognitive interviewing refined the Children's Palliative Outcome Scale (C-POS) for children with life-limiting conditions. This process improved the measure's clarity and relevance, especially for non-verbal children, enhancing its validity and acceptability.
Area of Science:
- Pediatric Palliative Care
- Health Outcomes Research
- Measurement Science
Background:
- The Children's Palliative Outcome Scale (C-POS) is undergoing development guided by best practices for outcome measure creation.
- Methodological recommendations emphasize cognitive testing for item refinement before psychometric evaluation.
Purpose of the Study:
- To conduct cognitive testing of the C-POS within its target population.
- To establish the comprehensibility, comprehensiveness, relevance, and acceptability of the C-POS.
Main Methods:
- A cross-sectional cognitive interview study was performed, adhering to COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) and Rothrock guidance.
- Cognitive interviews utilized 'think aloud' and verbal probing techniques with 36 parents/carers and 12 children (aged 5-17) with life-limiting conditions across 14 UK sites.
Main Results:
- Forty-eight participants engaged in 2–7 rounds of cognitive testing for five C-POS versions.
- Content and length were deemed acceptable; all items were considered important.
- Refinements included adapting language for non-verbal children (e.g., 'express' feelings, 'appropriate information') and improving item clarity (e.g., 'living life to the fullest').
Conclusions:
- Cognitive interviewing successfully refined the C-POS, particularly enhancing its suitability for non-verbal children.
- The study improved the measure's face and content validity.
- Preliminary evidence suggests the C-POS is acceptable for routine clinical practice.
Background:
The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing.
Aim:
To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability.
Design:
Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques.
Setting/Participants:
Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites.
Results:
Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important.
Conclusion:
Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.
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