Patient experiences of burn scars in adults and children and development of a health-related quality of life conceptual model: A qualitative study

•Patient reported impact of burn scars on health-related quality of life (HRQOL).•A conceptual model of burn scar HRQOL was developed.•Burn scar symptoms (physical and sensory) are a proximal indicator of HRQOL.•Seven distal indicators of HRQOL were found (e.g. social function, environment).•The conceptual model will inform the evaluation of HRQOL related to scars.

PurposeThe aim of this study was to understand the impact of burn scars on health-related quality of life (HRQOL) from the perspective of adults and children with burn scars, and caregivers to inform the development of a conceptual model of burn scar HRQOL.MethodTwenty-one participants (adults and children) with burn scars and nine caregivers participated in semi-structured, face-to-face interviews between 2012 and 2013. During the interviews, participants were asked to describe features about their (or their child's) burn scars and its impact on everyday life. Two coders conducted thematic analysis, with consensus achieved through discussion and review with a third coder. The literature on HRQOL models was then reviewed to further inform the development of a conceptual model of burn scar HRQOL.ResultsFive themes emerged from the qualitative data: ‘physical and sensory symptoms’, ‘impact of burn scar interventions’, ‘impact of burn scar symptoms’, ‘personal factors’ and ‘change over time’. Caregivers offered further insights into family functioning after burn, and the impacts of burn scars and burn scar interventions on family life. In the conceptual model, symptoms (sensory and physical) of burn scars are considered proximal to HRQOL, with distal indicators including functioning (physical, emotional, social, cognitive), individual factors and the environment. Overall quality of life was affected by HRQOL.ConclusionUnderstanding the impact of burn scars on HRQOL and the development of a conceptual model will inform future burn scar research and clinical practice.