Long-term Health-related Quality of Life and Burden of Disease After Intensive Care: Development of a Patient-reported Outcome Measure.

Abstract

BackgroundICU survivorship includes a diverse burden of disease. To understand the extent of the problems, the right issues must be identified, and the right questions need to be asked to the patients. Current follow-up instruments lack detailed questions in several areas relevant to survivors. Our aim was to identify health-related problems relevant and unique to ICU survivors, and to construct a comprehensive questionnaire able to address these issues.Methods Thirty-three ICU survivors were interviewed at least six months after ICU discharge. All types of everyday dysfunctions and disabilities were extracted and compiled into a questionnaire. The questionnaire was tested on ICU survivors and non-ICU treated subjects. Inclusion criteria for the ICU survivors were an ICU stay of at least 72 hours with the ICU discharge six months to three years prior to the study. The non-ICU treated subjects were obtained from the Swedish Population Register, matched for age and sex. Eligible participants received an invitation letter and were contacted by phone. If willing to participate, they were sent the questionnaire. ResultsAnalysis of the interviews yielded 238 questions in 13 domains: cognition, fatigue, physical health, pain, psychological health, activities of daily life, sleep, appetite and alcohol, sexual health, sensory functions, gastrointestinal, urinary tract and work life.In total, 395 of 518 ICU survivors and 197 of 231 non-ICU treated subjects returned a completed questionnaire, the response rate being 76.2% and 85.3% respectively. The two groups differed significantly in 16 of 25 comorbidities. ICU survivors differed in a majority of questions (p ≤ 0.05) compared to non-ICU treated subjects, distributed over all 13 domains. ConclusionsThis study describes the first step in developing a designated questionnaire for identification of health-related quality of life issues and long-term burden of disease after intensive care. A first version of the questionnaire was answered by 395 ICU survivors. The questionnaire could identify that they experience severe difficulties in a wide range of domains compared to non-ICU treated subjects.Trial registrationClinicalTrials.gov Ref# NCT 02767180