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

Catrin Griffiths,Timothy Pickles,Paul White,Danielle Cox,Philippa Tollow,Diana Harcourt

doi:10.3390/ebj2040019

Abstract

The CARe Burn Scales are a portfolio of burn-specific PROMs for people affected by burns, including a Child Form (for children < 8 years (parent-proxy)), a Young Person Form (for young people aged 8–17 years), an Adult Form, and a Parent Form (for parents/carers of children aged 0–17 years). This study aimed to determine the responsiveness and minimal important difference (MID) values of the three scales developed for use in paediatric burn services and research. Participants were recruited by 15 UK Burn Services. Participants completed the appropriate CARe Burn Scale and a set of appropriate comparison validated measures, at three time points: 4 weeks (T1), 3 months (T2) and 6 months (T3) post-burn injury. Spearman’s correlation analysis and effect sizes based on Cohen’s d thresholds were reported and MID values were calculated. At baseline, 250 participants completed the Child Form, 69 completed the Young Person Form, and 320 completed the Parent Form. A total of 85–92% of participants were retained at follow up. The tested CARe Burn Scales were all responsive to change over time. MID values were created for all subscales and ranged from 2 to 11 for the Child Form, 3 to 14 for the Young Person Form and 3 to 10 for the Parent Form. The CARe Burn Scales for children, young people and parents are responsive to change over time. The scales are freely available for clinical and research use.

Highlights

In the UK, 66,200 children and young people experienced a burn which required medical attention from 2013 to 2015 [1]
In order to address this need, we developed and validated the CARe Burn Scales, a set of age-appropriate burn-specific quality of life Patient-reported outcome measures (PROMs) (Child Form for children < 8 years, 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]
Aim: to conduct three concurrent studies in order to test the responsiveness of each of the CARe Burn Scales (Child, Young Person and Parent Forms) that have been developed for use in paediatric burn care and research

Summary

Introduction

In the UK, 66,200 children and young people experienced a burn which required medical attention from 2013 to 2015 [1]. The impact of the injury and subsequent scarring on a child’s physical, social and psychological well-being can be extensive [4,5]. Physical symptoms such as pain, sensitivity and itching of the scar itself are common, together with burden of treatment and psychosocial difficulties such as behavioural problems, trauma symptoms, social anxiety, sleep disturbance and body image distress [6,7,8]. Scarring concerns can impact on a child’s life at nursery or school and as young people grow older, establishing and maintaining romantic and intimate relationships [10,11,12]. Whilst some children and young people manage the challenges they face very well and may demonstrate positive outcomes and personal growth following a burn [13], others struggle to make the adjustment and to redefine a sense of normality [14]

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