ArticleThe patient2023
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.
Article in The patient, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07102433 (CHESS - Complexity and Outcomes in Health, Education, and Social Support Among Children and Young People With Life-limiting Conditions), which is not on this map. Cited by 10 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
CHESS - Complexity and Outcomes in Health, Education, and Social Support Among Children and Young People With Life-limiting Conditions: Establishing a Multisectoral Collaboration and Conceptual Framework to Advance Evidence and Practice.
Who cites it
10 citing papers in PubMed.
- A Mixed-Methods Exploration of the Quality of Care and Care Needs for Asian Children and Young Adults With Serious Long-Term Conditions.Health expectations : an international journal of public participation in health care and health policy · 2026Observational
- Observational
- Nurses' stressful experiences in providing palliative and end-of-life care for children: A meta-synthesis.Palliative & supportive care · 2026Review
- What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and Parents.The patient · 2025Article
- What are the greatest opportunities for innovation to improve access to and quality of palliative care services to children? A qualitative interview study.BMC palliative care · 2025Article
- Developing a Theory of Change and Implementation Plan to implement a novel child- and family-centred outcome measure in paediatric palliative care.Palliative medicine · 2025Article
- Article
- 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 · 2024Article
- Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children's research involvement group and expert item generation.Palliative medicine · 2023Article
- Development and psychometric testing of a pediatric chronic graft-versus-host disease symptom scale: protocol for a two-phase, mixed methods study.Frontiers in psychology · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
Abstract
backgroundSelf-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.
objectivesThe 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.
methodA 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.
resultsA 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.
conclusionsThis 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.
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