The development and validation of the CARe Burn Scale: Child Form: a parent-proxy-reported outcome measure assessing qua
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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 Catrin Griffiths1 · Ella Guest1 · Timothy Pickles2 · Linda Hollèn3 · Mariusz Grzeda1 · Philippa Tollow1 · Diana Harcourt1 Accepted: 30 August 2020 © The Author(s) 2020
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 WellBeing, 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. Keywords Parent · Paediatric · Child · PROM · Burn · Rasch
The British Burns Association Annual Conference 2017 presented dat the Royal College of Surgeons, London. Electronic supplementary material The online version of this article (https://doi.org/10.1007/s11136-020-02627-x) contains supplementary material, which is available to authorized users. * Catrin Griffiths [email protected] 1
Centre for Appearance Research (CAR), Department of Health and Social Sciences, University of the West of England, Frenchay Campus, Coldharbour Lane, Bristol BS16 1QY, UK
2
Centre for Trials Research (CTR), Cardiff University, Cardiff, UK
3
Centre for Academic Child Health, Bristol Medical School, University of Bristol, Bristol, UK
Introduction Burn injuries are the fourth most common cause of trauma in the world, with 11 million people requiring medical intervention including surgery each year [1]. Children under 5 years of age are at the gre
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