What Outcomes Matter Most to Paediatric Burn Patients and Their Caregivers: A Comparison of Short-Term and Long-Term Priorities.

Abstract

Identifying outcomes that matter most is key in driving specialized paediatric burn care. The aim of this study was to discover the most important outcomes for paediatric burns. Parents of children (0-3 year and 4-11 years old) and adolescents (12-17 yearss old) completed surveys to identify outcomes that matter most in the short-term (<6 months postburn) and long-term (6-24 months postburn). The percentage of patients scoring an outcome as 'very important' was used to rank the outcomes. Fifty-four parents/adolescents participated (response rate: 27%). Children had a median TBSA burned of 5.0% (IQR: 2.0-7.0%). In the short-term, 'good wound healing' and 'no wound infection' (both at 71.4-100%) were very important for all children. 'Not having pain' (90.3-93.8%) was ranked highest for children ≤11 years old, whereas 'walking or moving around' (85.7%) was most important for older children. In the long-term, more variation was seen in outcome priorities; however, both 'not having pain' (53.6-85.7%) and 'flexibility of scar(s)' (60.7-71.4%) were considered very important by all three groups. Patient- and parent-derived priorities are important for developing consumer-centric, highest-value care pathways. The priority of the outcomes identified is a starting point to discuss treatment options and recovery priorities in a family-centric approach to guide high-value, individualized care.