title: Development of a conceptual framework of health-related quality of life in pressure ulcers: a patient-focused approach.
abstract: BACKGROUND
  Evaluating outcomes such as health-related quality of life is particularly important and relevant in skin conditions such as pressure ulcers where the condition and associated interventions pose substantial burden to patients. Measures to evaluate such outcomes need to be developed by utilising patient-perspective to ensure that content and conceptualisation is relevant to patients.
  
  
  OBJECTIVE
  Our aim was to develop a conceptual framework of health-related quality of life in pressure ulcers, based on patients' views about the impact of pressure ulcers and interventions on health-related quality of life to inform the development of a new patient-reported outcome measure. SETTING, PARTICIPANTS AND METHODS: We developed a working conceptual framework based on a previous review of the literature, then used semi-structured qualitative interviews with 30 adults with pressure ulcers (22-94 years) purposively sampled from hospital, community and rehabilitation care settings in England and Northern Ireland to obtain patients' views, and thematic content analysis and review by a multidisciplinary expert group to develop the final conceptual framework.
  
  
  RESULTS
  Our conceptual model includes four health-related quality of life domains (symptoms, physical functioning, psychological well-being, social functioning), divided into 13 sub-domains and defined by specific descriptive components.
  
  
  CONCLUSIONS
  We have identified health-related quality of life outcomes that are important to people with pressure ulcers and developed a conceptual framework using robust and systematic methods, which provides the basis for the development of a new pressure ulcer-specific measure of health-related quality of life.
authors.affiliation: CTRU, University of Leeds, 71-75 Clarendon Road, Leeds LS2 9JT, West Yorkshire, UK. c.gorecki@leeds.ac.uk
authors.forename: Claudia
authors.initials: C
authors.lastname: Gorecki
authors.forename: Donna L
authors.initials: DL
authors.lastname: Lamping
authors.forename: Julia M
authors.initials: JM
authors.lastname: Brown
authors.forename: Anna
authors.initials: A
authors.lastname: Madill
authors.forename: Jill
authors.initials: J
authors.lastname: Firth
authors.forename: Jane
authors.initials: J
authors.lastname: Nixon
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D006304:Health Status; D006801:Humans; D008875:Middle Aged; D008962:Models, Theoretical; D018802:Patient-Centered Care; D003668:Pressure Ulcer / Q000451:nursing / Q000523:psychology*; D011788:Quality of Life