• Thorax · Jan 2018

    Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure.

    • Victor D Dinglas, Caroline M Chessare, Wesley E Davis, Ann Parker, Friedman Lisa Aronson LA Outcomes After Critical Illness and Surgery Group, Johns Hopkins University, Baltimore, Maryland, USA. , Elizabeth Colantuoni, Clifton O Bingham, Alison E Turnbull, and Dale M Needham.
    • Outcomes After Critical Illness and Surgery Group, Johns Hopkins University, Baltimore, Maryland, USA.
    • Thorax. 2018 Jan 1; 73 (1): 7-12.

    BackgroundThere is heterogeneity among the outcomes evaluated in studies of survivors of acute respiratory failure (ARF).AimTo evaluate the importance of specific outcome domains to acute respiratory distress syndrome (ARDS) survivors, their family members and clinical researchers.MethodsNineteen outcome domains were identified from the National Institutes of Health's Patient Reported Outcomes Measurement Information System; WHO's International Classification of Functioning, Disability, and Health; Society of Critical Care Medicine's Post-Intensive Care Syndrome (PICS); as well as patient, clinician and researcher input. We surveyed ARDS survivors, family members and critical care researchers, 279 respondents in total, using a 5-point scale (strongly disagree, disagree, neutral, agree and strongly agree) to rate the importance of measuring each domain in studies of ARF survivors' postdischarge outcomes.Measurements And Main ResultsAt least 80% of patients and family members supported (ie, rated 'agree' or 'strongly agree') that 15 of the 19 domains should be measured in all future studies. Among researchers, 6 of 19 domains were supported, with researchers less supportive for all domains, except survival (95% vs 72% support). Overall, four domains were supported by all groups: physical function, cognitive function, return to work or prior activities and mental health.ConclusionPatient, family and researcher groups supported inclusion of outcome domains that fit within the PICS framework. Patients and family members also supported many additional domains, emphasising the importance of including patients/family, along with researchers, in consensus processes to select core outcome domains for future research studies.© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

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