title: Health-related quality of life: implications for critical care interventional studies and why we need to collaborate with patients.
abstract: OBJECTIVE
  Health-related quality of life (HRQoL) is an important patient-reported outcome measure following critical illness. 'Validated' and professionally endorsed generic measures are widely used to evaluate critical care intervention and guide practice, policy and research. Although recognizing that they are 'here to stay', leading QoL researchers are beginning to question their 'fitness for purpose'. It is therefore timely to review critiques of their limitations in the wider healthcare and social science literatures and to examine the implications for critical care research including, in particular, emerging interventional studies in which HRQoL is the primary outcome of interest.
  
  
  RESULTS
  Generic HRQoL measures have provided important yet limited insights into HRQoL among survivors of critical illness. They are rarely developed or validated in collaboration with patients and cannot therefore be assumed to reflect their experiences and perspectives.
  
  
  CONCLUSIONS
  Collaboration with patients is advocated in order to improve the interpretation and utility of such data. Failure to do so may result in important study effects being overlooked and the dismissal of potentially useful interventions.
authors: University of Edinburgh and NHS Lothian, Edinburgh, Scotland, UK. pam.ramsay@luht.scot.nhs.uk
authors: Pam
authors: P
authors: Ramsay
mesh_terms: D003299:Cooperative Behavior; D003422:Critical Care / Q000458:organization & administration*; D006301:Health Services Needs and Demand; D006304:Health Status; D006801:Humans; D010358:Patient Participation; D011788:Quality of Life