Patient experiences of burn scars in adults and children and development of a health-related quality of life conceptual model: A qualitative study § Megan Simons a,b, * , Nathaniel Price a , Roy Kimble b,c,d , Zephanie Tyack b a Department of Occupational Therapy, Lady Cilento Children’s Hospital, 501 Stanley St, South Brisbane, South Brisbane 4101, QLD, Australia b Centre for Burns and Trauma Research, Child Health Research Centre, Level 7, 46 Graham Street, South Brisbane 4101, QLD, Australia c Department of Paediatric Surgery, Urology, Neonatal Surgery, Burns and Trauma, Lady Cilento Children’s Hospital, Brisbane 4101, QLD, Australia d School of Medicine, The University of Queensland, St Lucia 4067, QLD, Australia b u r n s x x x ( 2 0 1 6 ) x x x – x x x a r t i c l e i n f o Article history: Accepted 16 November 2015 Keywords: Burns Cicatrix Health-related quality of life Patient-reported outcomes Conceptual model a b s t r a c t Purpose: The 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. Method: Twenty-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. Results: Five 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), indi- vidual factors and the environment. Overall quality of life was affected by HRQOL. Conclusion: Understanding the impact of burn scars on HRQOL and the development of a conceptual model will inform future burn scar research and clinical practice. Crown Copyright # 2015 Published by Elsevier Ltd and ISBI. All rights reserved. § This study was presented at the 39th Australia and New Zealand Burn Association Annual Scientific Meeting (Melbourne, October 2015) and was awarded the allied health best presentation prize. * Corresponding author at: Lady Cliento Children’s Hospital, Department of Occupational Therapy, 501 Stanley Street, South Brisbane, QLD 4101, Australia. Tel.: +61 7 3068 2275. E-mail addresses: Megan.Simons@health.qld.gov.au (M. Simons), Nathaniel.Price@health.qld.gov.au (N. Price), royk@uq.edu.au (R. Kimble), z.tyack@uq.edu.au, zephanie.tyack@gofarm.com.au (Z. Tyack). JBUR-4822; No. of Pages 13 Please cite this article in press as: Simons M, et al. Patient experiences of burn scars in adults and children and development of a health-related quality of life conceptual model: A qualitative study. Burns (2016), http://dx.doi.org/10.1016/j.burns.2015.11.012 Available online at www.sciencedirect.com ScienceDirect journal homepage: www.elsevier.com/locate/burns http://dx.doi.org/10.1016/j.burns.2015.11.012 0305-4179/Crown Copyright # 2015 Published by Elsevier Ltd and ISBI. All rights reserved.