@article{ref1,
title="Patients' perspectives on quality of life after burn",
journal="Burns: journal of the International Society for Burn Injuries",
year="2017",
author="Kool, Marianne B. and Geenen, Rinie and Egberts, Marthe R. and Wanders, Hendriët and Van Loey, Nancy E.",
volume="43",
number="4",
pages="747-756",
abstract="BACKGROUND: The concept quality of life (QOL) refers to both health-related outcomes and one's skills to reach these outcomes, which is not yet incorporated in the burn-related QOL conceptualisation. The aim of this study was to obtain a comprehensive overview of relevant burn-specific domains of QOL from the patient's perspective and to determine its hierarchical structure. <br><br>METHODS: Concept mapping was used comprising a focus group (n=6), interviews (n=25), and a card-sorting task (n=24) in burn survivors. Participants sorted aspects of QOL based on content similarity after which hierarchical cluster analysis was used to determine the hierarchical structure of burn-related QOL. <br><br>RESULTS: Ninety-nine aspects of burn-related QOL were selected from the interviews, written on cards, and sorted. The hierarchical structure of burn-related QOL showed a core distinction between resilience and vulnerability. Resilience comprised the domains positive coping and social sharing. Vulnerability included 5 domains subdivided in 13 subdomains: the psychological domain included trauma-related symptoms, cognitive symptoms, negative emotions, body perception and depressive mood; the economical domain comprised finance and work; the social domain included stigmatisation/invalidation; the physical domain comprised somatic symptoms, scars, and functional limitations; and the intimate/sexual domain comprised the relationship with partner, and anxiety/avoidance in sexual life. <br><br>CONCLUSION: From the patient's perspective, QOL following burns includes a variety of vulnerability and resilience factors, which forms a fresh basis for the development of a screening instrument. Whereas some factors are well known, this study also revealed overlooked problem and resilience areas that could be considered in client-centred clinical practice in order to customize self-management support.<br><br>Copyright © 2016 Elsevier Ltd and ISBI. All rights reserved.<p /> <p>Language: en</p>",
language="en",
issn="0305-4179",
doi="10.1016/j.burns.2016.11.016",
url="http://dx.doi.org/10.1016/j.burns.2016.11.016"
}