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

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.

Testing the Responsiveness of and Defining Minimal Important Difference (MID) Values for the CARe Burn Scales: Patient-Reported Outcome Measures to Assess Quality of Life for Children and Young People Affected by Burn Injuries, and Their Parents/Caregivers

“…These two individual subscales are scored on a scale from 0 to 100 so that high scores reflect better health outcomes. Further detail about the development and validation of the scale is available in Griffiths et al [27].…”

“…Initially, we interviewed and consulted with people who have experienced burn injuries themselves, family members of those who have had burns, and health professionals working in NHS burn services in order to inform the content of the scales. This qualitative work and the subsequent drafting and validity/reliability testing of the PROMs involved a total of 1302 people with burns, their family members and psychosocial specialists in this field [26][27][28][29]. A total of 637 paediatric patients and parents/carers from burn services in England, Scotland and Wales took part in this longitudinal study.…”

“…In order to address this need, we developed and validated the CARe Burn Scales, a set of age-appropriate burn-specific quality of life PROMs (Child Form for children < 8 years (parent-proxy), Young Person Form for young people aged 8-17, Adult Form for adults aged 18 and over, and a Parent Form for parents of children and young people aged 0-17 with a burn) [26][27][28][29]. The scales measure a wide range of physical, psychological and social aspects of living with a burn injury or supporting a child with a burn.…”

“…We followed a recognised, rigorous development and validation process [30] based on guidelines for the development of health outcome measures [31]. This involved a step-by-step process for item generation involving literature reviews [32,33], qualitative interviews with over 60 patients/parents and 20 health professionals [34], item reduction (using expert opinion and Rasch analysis) and psychometric evaluation with 1302 participants which provided evidence of construct reliability, internal consistency and validity with other scales [26][27][28][29].…”

Researches on cognitive sequelae of burn injury: Current status and advances

“…Patient-reported outcome measures (PROMs) can identify patient needs and therapeutic progress. The CARe Burn Scale can be used to measure the QoL after burn injury so as to facilitate rehabilitation (Griffiths et al, 2021). The FIM instrument has been extensively studied and validated in the inpatient rehabilitation setting, especially the cognitive and motor domains, as an outcome predictor for discharge from rehabilitation in burn patients (Gerrard et al, 2013).…”