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The development and validation of the CARe Burn Scale: Child Form: a parent-proxy-reported outcome measure assessing quality of life for children aged 8 years and under living with a burn injury

Griffiths, Catrin, Guest, Ella, Pickles, Timothy ORCID: https://orcid.org/0000-0001-7743-0234, Hollèn, Linda, Grzeda, Mariusz, Tollow, Philippa and Harcourt, Diana 2021. The development and validation of the CARe Burn Scale: Child Form: a parent-proxy-reported outcome measure assessing quality of life for children aged 8 years and under living with a burn injury. Quality of Life Research 30 , pp. 239-250. 10.1007/s11136-020-02627-x

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Abstract

Purpose Patient-reported outcome measures (PROMs) identify patient needs and therapeutic progress. This paper outlines the development and validation of the CARe Burn Scale: Child Form, a parent-proxy-reported outcome measure that assesses quality of life in children aged 8 and under living with a burn injury. Methods A literature review and interviews with 12 parents of children with a burn and seven health professionals informed the development of a conceptual framework and draft PROM. Cognitive debriefing interviews with 18 parents and eight health professionals provided feedback to ascertain content validity, and 311 parents took part in field testing. Rasch and traditional psychometric analyses were conducted to create a shortened version. Further psychometric analyses with 133 parents tested the shortened CARe Burn Scale in relation to other parent-proxy measures. Results The final conceptual framework included 5 domains: Social and Emotional Difficulties, Social and Emotional Well-Being, Wound/Scar Discomfort, Wound/Scar Treatment and Physical Abilities. Two scales fulfilled Rasch and traditional psychometric analyses, providing evidence of construct validity, acceptability, and reliability. Three scales did not fulfil the Rasch criteria and were retained as checklists. Compared to other parent-proxy measures, individual CARe Burn Scales correlated moderately with similar constructs and had low correlations with dissimilar constructs, indicating evidence of criterion validity (concurrent and discriminant). Conclusions The CARe Burn Scale: Child Form can be used to measure children’s quality of life after having a burn injury which can inform rehabilitation and surgical decision-making.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Centre for Trials Research (CNTRR)
Additional Information: This article is licensed under a Creative Commons Attribution 4.0 International License
Publisher: Springer Verlag
ISSN: 0962-9343
Funders: Restore Burn and Wound Research, the Scar Free Foundation Centre for Children's Burns Research, Dan�s Fund for Burns and the Scar Free Foundation
Date of First Compliant Deposit: 18 September 2020
Date of Acceptance: 30 August 2020
Last Modified: 06 May 2023 03:14
URI: https://orca.cardiff.ac.uk/id/eprint/134889

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