title: Patients' perspectives on quality of life after burn.
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.
  
  
  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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Association of Dutch Burn Centres, Postbus 1015, 1940 EA Beverwijk, The Netherlands; Utrecht University, Department of Psychology, Heidelberglaan 1, 3508 TC Utrecht, The Netherlands. Electronic address: mkool@burns.nl.
authors.forename: Marianne B
authors.initials: MB
authors.lastname: Kool
authors.affiliation: Utrecht University, Department of Psychology, Heidelberglaan 1, 3508 TC Utrecht, The Netherlands.
authors.forename: Rinie
authors.initials: R
authors.lastname: Geenen
authors.affiliation: Association of Dutch Burn Centres, Postbus 1015, 1940 EA Beverwijk, The Netherlands; Utrecht University, Department of Psychology, Heidelberglaan 1, 3508 TC Utrecht, The Netherlands.
authors.forename: Marthe R
authors.initials: MR
authors.lastname: Egberts
authors.affiliation: Dutch Association of Burn Survivors, Postbus 1015, 1940 EA Beverwijk, The Netherlands.
authors.forename: Hendriët
authors.initials: H
authors.lastname: Wanders
authors.affiliation: Association of Dutch Burn Centres, Postbus 1015, 1940 EA Beverwijk, The Netherlands; Utrecht University, Department of Psychology, Heidelberglaan 1, 3508 TC Utrecht, The Netherlands.
authors.forename: Nancy E
authors.initials: NE
authors.lastname: Van Loey
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001007:Anxiety / Q000523:psychology; D001294:Attitude to Health; D002056:Burns / Q000503:physiopathology / Q000523:psychology*; D003071:Cognition; D005221:Fatigue / Q000523:psychology; D005260:Female; D017144:Focus Groups; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D055500:Resilience, Psychological; D000074384:Sexual Health; D017741:Survivors / Q000523:psychology
keywords: Burns; Patients’ perspective; QOL; Resilience; Trauma; Vulnerability