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

Thorax. 2018 Jan;73(1):7-12. doi: 10.1136/thoraxjnl-2017-210234. Epub 2017 Jul 29.


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.

Keywords: adult; follow-up studies; intensive care; patient outcome assessment; patient-centered outcomes research; respiratory.

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Biomedical Research
  • Family / psychology*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Outcome Assessment, Health Care*
  • Research Personnel / psychology*
  • Respiratory Distress Syndrome* / diagnosis
  • Respiratory Distress Syndrome* / psychology
  • Respiratory Distress Syndrome* / therapy
  • Surveys and Questionnaires
  • Survivors / psychology*
  • Young Adult