The longitudinal validity, reproducibility and responsiveness of the Brisbane Burn Scar Impact Profile (caregiver report for young children version) for measuring health-related quality of life in children with burn scars

M Simons; R Kimble; S McPhail; Z Tyack

doi:10.1016/j.burns.2019.04.015

The longitudinal validity, reproducibility and responsiveness of the Brisbane Burn Scar Impact Profile (caregiver report for young children version) for measuring health-related quality of life in children with burn scars

Burns. 2019 Dec;45(8):1792-1809. doi: 10.1016/j.burns.2019.04.015. Epub 2019 May 28.

Authors

M Simons¹, R Kimble², S McPhail³, Z Tyack⁴

Affiliations

¹ Department of Occupational Therapy, Queensland Children's Hospital, 501 Stanley St, South Brisbane, Queensland 4101, Australia; Centre for Burns and Trauma Research, Child Health Research Centre, Level 7, Centre for Children's Health Research, Raymond Terrace, South Brisbane, 4101, Australia. Electronic address: Megan.Simons@health.qld.gov.au.
² Centre for Burns and Trauma Research, Child Health Research Centre, Level 7, Centre for Children's Health Research, Raymond Terrace, South Brisbane, 4101, Australia; Department of Paediatric Surgery, Urology, Neonatal Surgery, Burns and Trauma, Queensland Children's Hospital, Brisbane, Queensland 4101, Australia; School of Medicine, The University of Queensland, St Lucia, Queensland 4067, Australia. Electronic address: royk@uq.edu.au.
³ Institute of Health and Biomedical Innovation and School of Public Health and Social Work, Queensland University of Technology, Kelvin Grove, Queensland 4059, Australia; Centre for Functioning and Health Research, Metro South Health, Buranda, Queensland 4102, Australia. Electronic address: steven.mcphail@qut.edu.au.
⁴ Centre for Burns and Trauma Research, Child Health Research Centre, Level 7, Centre for Children's Health Research, Raymond Terrace, South Brisbane, 4101, Australia; Centre for Functioning and Health Research, Metro South Health, Buranda, Queensland 4102, Australia. Electronic address: z.tyack@uq.edu.au.

PMID: 31147101
DOI: 10.1016/j.burns.2019.04.015

Abstract

Background: The measurement of health-related quality of life (HRQoL) provides information about the perceived burden of the health condition and treatments from a lived experience. The Brisbane Burn Scar Impact Profile (caregiver report for young children, BBSIP^0-8), developed in 2013, is a proxy-report measure of burn scar-specific HRQoL. The aim of this study was to report its psychometric properties in line with an evaluative purpose.

Methods: Caregivers of children up to 8 years of age at risk of burn scarring were recruited into a prospective, longitudinal cohort study. Caregivers completed the BBSIP^0-8, Pediatric Quality of Life Inventory and Patient Observer Scar Assessment Scale at baseline (approximately ≥85% of the total body surface area re-epithelialised), 1-2 weeks after baseline and 1-month after baseline. Psychometric properties measured included internal consistency, test-retest reliability, validity and responsiveness.

Results: Eighty-six caregivers of mostly male children (55%), of a median age (IQR) of 1 year, 10 months (2 years, 1 month) and total body surface area burn of 1.5% (3.0%) were recruited. Over one third of participants were grafted and 15% had contractures or skin tightness at baseline. Internal consistency of ten item groups ranged from 0.73 to 0.96. Hypothesised correlations of changes in the BBSIP^0-8 items with changes in criterion measures supported longitudinal validity (ρ ranging from -0.73 to 0.68). The majority of item groups had acceptable reproducibility (ICC = 0.65-0.83). The responsiveness of five item groups was supported (AUC = 0.71-0.90).

Conclusion: The psychometric properties tested support the use of the BBSIP^0-8 as an evaluative measure of burn scar-related health-related quality of life for children aged below eight years in the early post-acute period of rehabilitation. Further investigation at longer time period after burn injury is indicated.

Keywords: Burn scar; Cicatrix; Health-related quality of life; Patient reported outcome measure; Pediatric.

Publication types

Validation Study

MeSH terms

Activities of Daily Living
Anxiety / psychology
Burns / complications
Burns / physiopathology*
Burns / psychology
Caregivers
Child
Child, Preschool
Cicatrix / etiology
Cicatrix / physiopathology*
Cicatrix / psychology
Female
Friends
Humans
Infant
Irritable Mood
Longitudinal Studies
Male
Minimal Clinically Important Difference
Parents*
Patient Reported Outcome Measures
Physical Appearance, Body
Prospective Studies
Proxy
Quality of Life
Reproducibility of Results
Social Participation
Surveys and Questionnaires