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; Holl�n, Linda; Grzeda, Mariusz; Tollow, Philippa; Harcourt, Diana

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.

• Journal Article Type: Article
• Acceptance Date: Aug 28, 2020
• Online Publication Date: Sep 9, 2020
• Publication Date: Jan 1, 2021
• Deposit Date: Sep 21, 2020
• Publicly Available Date: Feb 5, 2021
• Journal: Quality of Life Research
• Print ISSN: 0962-9343
• Electronic ISSN: 1573-2649
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 30
• Pages: 239–250
• DOI: https://doi.org/10.1007/s11136-020-02627-x
• Keywords: Burn, PROM, Parent-proxy, Quality of Life
• Public URL: https://uwe-repository.worktribe.com/output/6698989
• Additional Information: Accepted: 30 August 2020; First Online: 9 September 2020; : ; : Catrin Griffiths declares that he/she has no conflict of interest. Ella Guest declares that he/she has no conflict of interest. Tim Pickles declares that he/she has no conflict of interest. Linda Hollen declares that he/she has no conflict of interest. Mariusz Grzeda declares that he/she has no conflict of interest. Philippa Tollow declares that he/she has no conflict of interest. Diana Harcourt declares that he/she has no conflict of interest.; : All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and national research committee (University of the West of England and NHS Research Ethics Committees; REC reference: 15/SW/0263, IRAS project ID: 167766) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.; : Informed consent was obtained from all individual participants included in the study.; : This article does not contain any studies with animals performed by any of the authors.