TY - JOUR
T1 - Design and Administration of Patient-Centred Outcome Measures
T2 - The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members
AU - Coombes, Lucy
AU - Harðardóttir, Daney
AU - Braybrook, Debbie
AU - Roach, Anna
AU - Scott, Hannah
AU - Bristowe, Katherine
AU - Ellis-Smith, Clare
AU - Downing, Julia
AU - Bluebond-Langner, Myra
AU - Fraser, Lorna K.
AU - Murtagh, Fliss E.M.
AU - Harding, Richard
N1 - Funding Information:
CPOS was funded by a European Research Council’s Consolidator Award (grant ID: 772635), with the overall aim to develop and validate a person-centred outcome measure for children, young people and their families affected by life-limiting and life-threatening conditions. Richard Harding is the Principal Investigator. This article reflects only the authors’ views, and the European Research Council is not liable for any use that may be made of the information contained therein. Fliss Murtagh is an NIHR Senior Investigator. The views expressed in this article are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Funding Information:
The authors would like to acknowledge the Children's Palliative care Outcome Scale (C-POS) Study Steering Group members. This study is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Publisher Copyright:
© 2023, The Author(s).
PY - 2023/9
Y1 - 2023/9
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85160223817&partnerID=8YFLogxK
U2 - 10.1007/s40271-023-00627-w
DO - 10.1007/s40271-023-00627-w
M3 - Article
C2 - 37221441
AN - SCOPUS:85160223817
SN - 1178-1653
VL - 16
SP - 473
EP - 483
JO - Patient
JF - Patient
IS - 5
ER -