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The development and validation of the CARe Burn Scale - Adult Form: A Patient Reported Outcome Measure (PROM) to assess quality of life for adults living with a burn injury

Griffiths, Catrin; Guest, Ella; Pickles, Timothy; Hollén, Linda; Grzeda, Mariusz; White, Paul; Tollow, Philippa; Harcourt, Diana

Authors

Timothy Pickles

Linda Hollén

Mariusz Grzeda

Paul White Paul.White@uwe.ac.uk
Associate Professor in Applied Statistics

Dr Pippa Howard Pippa.Tollow@uwe.ac.uk
Research Fellow in Burns PROMS Research

Diana Harcourt Diana2.Harcourt@uwe.ac.uk
Professor in Appearance & Health Psychology Research



Abstract

Introduction: Patient Reported Outcome Measures (PROMs) identify vital information about patient needs and therapeutic progress. This paper outlines the development and validation of the CARe Burn Scale - Adult Form: a PROM that assesses quality of life in adults living with a burn injury.

Methods: 11 patient, 10 family members and 4 health professional interviews, and a systematic review were conducted to inform the development of a conceptual framework and a draft measure. Cognitive debriefing interviews conducted with 3 adult burn patients, 1 family member and 8 health professionals provided feedback to ascertain content validity of the measure. The measure was then field tested with 304 adult burn patients. Rasch psychometric analysis was conducted for scale reduction, and traditional psychometric analyses provided a comparison with other measures. Further psychometric testing with an additional 118 adult burn patients tested the shortened CARe Burn Scale in relation to other quality of life PROMs.

Results: The conceptual framework outlined 14 domains; 12 of which fulfilled Rasch and traditional psychometric analyses. Two individual scales did not fulfil the Rasch criteria and were retained as checklists. Individual CARe Burn Scales correlated moderately-to-highly with other quality of life scales measuring similar constructs, and had low-to-no correlations with dissimilar constructs and the majority of sociodemographic factors, indicating evidence of concurrent and divergent validity.

Conclusions: The CARe Burn Scale – Adult Form can help identify patient needs and provides burns-specialist health professionals with a tool to assess quality of life and therapeutic progress after a burn event and related treatment.

Journal Article Type Article
Publication Date May 1, 2019
Journal Journal of Burn Care and Research
Print ISSN 1559-047X
Electronic ISSN 1559-0488
Publisher Oxford University Press (OUP)
Peer Reviewed Peer Reviewed
Volume 40
Issue 3
Pages 312-326
APA6 Citation Griffiths, C., Guest, E., Pickles, T., Hollén, L., Grzeda, M., White, P., …Harcourt, D. (2019). The development and validation of the CARe Burn Scale - Adult Form: A Patient Reported Outcome Measure (PROM) to assess quality of life for adults living with a burn injury. Journal of Burn Care and Research, 40(3), 312-326. https://doi.org/10.1093/jbcr/irz021
DOI https://doi.org/10.1093/jbcr/irz021
Keywords Patient-Reported Outcome Measure, PROM, adult, burn, scar, quality of life, visible difference
Publisher URL https://doi.org/10.1093/jbcr/irz021
Additional Information Additional Information : This is a pre-copyedited, author-produced version of an article accepted for publication in Journal of Burn Care and Research following peer review. The version of record [Griffiths, C., Guest, E., Pickles, T., Hollén, L., Grzeda, M., White, P., Tollow, P. and Harcourt, D. (2019) The development and validation of the CARe Burn Scale - Adult Form: A Patient Reported Outcome Measure (PROM) to assess quality of life for adults living with a burn injury. Journal of Burn Care and Research, 40 (3) pp. 312-326. ISSN 1559-0488] is available online at: https://doi.org/10.1093/jbcr/irz021.

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