Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members

Lucy Coombes (), Daney Harðardóttir, Debbie Braybrook, Anna Roach, Hannah Scott, Katherine Bristowe, Clare Ellis-Smith, Julia Downing, Myra Bluebond-Langner, Lorna K. Fraser, Fliss E. M. Murtagh and Richard Harding
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Lucy Coombes: King’s College London
Daney Harðardóttir: King’s College London
Debbie Braybrook: King’s College London
Anna Roach: King’s College London
Hannah Scott: King’s College London
Katherine Bristowe: King’s College London
Clare Ellis-Smith: King’s College London
Julia Downing: King’s College London
Myra Bluebond-Langner: University College London
Lorna K. Fraser: King’s College London
Fliss E. M. Murtagh: University of Hull
Richard Harding: King’s College London

The Patient: Patient-Centered Outcomes Research, 2023, vol. 16, issue 5, No 4, 473-483

Abstract: Abstract Background Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. Objectives The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. Method A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. Results A total of 79 participants were recruited: 39 children aged 5–17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0–17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. Conclusions This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children.

Date: 2023
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DOI: 10.1007/s40271-023-00627-w

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