The Brisbane Burn Scar Impact Profile (child and young person version) for measuring health-related quality of life in children with burn scars: a longitudinal cohort study of reliability, validity and responsiveness

BACKGROUND: Clinical practice benefits from the measurement of health-related quality of life (HRQoL) to reflect the impact of the disease and treatments from the patient's lived experience. The Brisbane Burn Scar Impact Profile (child and young person version, BBSIP8-18), developed in 2013, is a self-report measure of burn scar-specific HRQoL. The purpose of the study was to test reliability, validity and responsiveness of this measure for an evaluative purpose. METHODS: Young people aged 8-18 years with burn scarring or at probable risk of burn scarring (defined as 14 days or longer to re-epithelialize) were included in a prospective, longitudinal cohort study. Data was collected at a paediatric burn centre at baseline (when ≥85% of the total body surface area re- epithelialized), then 1-2 weeks and 1-month post-baseline. Participants completed measures of HRQoL (BBSIP8-18, Pediatric Quality of Life Inventory) and scar characteristics (Patient Observer Scar Assessment Scale) at each time-point. RESULTS: Sixty-five participants completed the baseline testing. Forty-nine participants completed testing at 1-2 weeks post-baseline and thirty-two at 1-month post-baseline. Internal consistency of item groups ranged from Cronbach's α 0.60 (frequency of sensory symptoms) to 0.90 (emotional reactions). All item groups expected to be stable had acceptable test-retest reliability (ICC = 0.71-0.83), except 'mobility' and 'friendships and social interaction' (ICC = 0.52 and 0.45). Construct validity was supported with 10 of 13 (77%) hypothesised correlations of change in the BBSIP8-18 items corresponding with changes in external criterion measures. The responsiveness of 8 out of 10 item groups tested against an external criterion was supported (AUC = 0.71-0.92). CONCLUSION: The BBSIP8-18 has acceptable reliability, validity and responsiveness supporting its use as an evaluative self-report measure of burn scar-specific HRQoL in the early post-acute phase after burn injury