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, Lisa Aronson Friedman, Elizabeth Colantuoni, Clifton O. Bingham, Alison E. Turnbull, Dale M. Needham

Research output: Contribution to journalArticlepeer-review


Background: There is heterogeneity among the outcomes evaluated in studies of survivors of acute respiratory failure (ARF). Aim: To evaluate the importance of specific outcome domains to acute respiratory distress syndrome (ARDS) survivors, their family members and clinical researchers. Methods: Nineteen 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 results: At 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. Conclusion: Patient, 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.

Original languageEnglish (US)
Pages (from-to)7-12
Number of pages6
Issue number1
StatePublished - Jan 1 2018


  • adult
  • follow-up studies
  • intensive care
  • patient outcome assessment
  • patient-centered outcomes research
  • respiratory

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine

Fingerprint Dive into the research topics of 'Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure'. Together they form a unique fingerprint.

Cite this