Conceptualizing and measuring health-related quality of life in critical care.

INTRODUCTION: 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.