title: Conceptualizing and measuring health-related quality of life in critical care.
abstract: BACKGROUND
  When assessing health-related quality of life (HRQL), critical care outcomes research generally uses generic measures in the absence of a suitable critical care-specific measure. Our aims were to construct a conceptual framework of survivors' HRQL and assess the extent to which the 2 most commonly used generic measures (the Short Form 36 Health Survey and EuroQol-5D) covered the framework.
  
  
  METHODS
  A preliminary framework for survivors' HRQL was constructed based on a systematic literature review and on a secondary analysis of 40 existing in-depth interviews with adult, critical care survivors. Its adequacy was then tested using new in-depth interviews with a maximum variation sample of critical care survivors. The extent of coverage of the final framework by the 2 generic HRQL instruments was then evaluated in 2 ways: by comparison with critical care survivors' accounts from the new in-depth interviews and by eliciting survivors' views on the adequacy of the 2 generic HRQL instruments using cognitive debriefing.
  
  
  RESULTS
  The final framework recognized 3 aspects of health status that affected 9 areas of life. The 2 most commonly used generic measures had substantial gaps in their coverage of the framework of survivors' HRQL.
  
  
  CONCLUSIONS
  The findings argue strongly for a new critical care-specific HRQL measure.
authors.affiliation: Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, WC1H 9SH, United Kingdom. Electronic address: wanchin.lim@gmail.com.
authors.forename: Wan Chin
authors.initials: WC
authors.lastname: Lim
authors.affiliation: Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, WC1H 9SH, United Kingdom. Electronic address: Nick.Black@lshtm.ac.uk.
authors.forename: Nick
authors.initials: N
authors.lastname: Black
authors.affiliation: Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, WC1H 9SH, United Kingdom.
authors.forename: Donna
authors.initials: D
authors.lastname: Lamping
authors.affiliation: Intensive Care National Audit & Research Centre (ICNARC), London, WC1V 6AZ, United Kingdom. Electronic address: kathy.rowan@icnarc.org.
authors.forename: Kathryn
authors.initials: K
authors.lastname: Rowan
authors.affiliation: Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, WC1H 9SH, United Kingdom. Electronic address: Nicholas.Mays@lshtm.ac.uk.
authors.forename: Nicholas
authors.initials: N
authors.lastname: Mays
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D003071:Cognition; D015331:Cohort Studies; D003422:Critical Care / Q000523:psychology*; D016638:Critical Illness / Q000523:psychology*; D005260:Female; D006304:Health Status; D006801:Humans; D007398:Interpersonal Relations; D007902:Length of Stay; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D010551:Personality; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D012111:Residence Characteristics; D058992:Social Participation; D017741:Survivors / Q000523:psychology*
keywords: Cognitive debriefing; Critical care; Generic measures; Health-related quality of life; Intensive care; Qualitative research