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Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure
  1. Victor D Dinglas1,2,
  2. Caroline M Chessare1,2,
  3. Wesley E Davis1,
  4. Ann Parker1,2,
  5. Lisa Aronson Friedman1,2,
  6. Elizabeth Colantuoni1,3,
  7. Clifton O Bingham4,5,6,
  8. Alison E Turnbull1,2,7,
  9. Dale M Needham1,2,8
  1. 1 Outcomes After Critical Illness and Surgery Group, Johns Hopkins University, Baltimore, Maryland, USA
  2. 2 Division of Pulmonary and Critical Care Medicine, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA
  3. 3 Department of Biostatistics, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA
  4. 4 Johns Hopkins Arthritis Center, Johns Hopkins University, Baltimore, Maryland, USA
  5. 5 Rheumatic Diseases Research Core Center, Johns Hopkins University, Baltimore, Maryland, USA
  6. 6 Divisions of Rheumatology and Allergy and Clinical Immunology, Johns Hopkins University, Baltimore, Maryland, USA
  7. 7 Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA
  8. 8 Department of Physical Medicine and Rehabilitation, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA
  1. Correspondence to Victor D Dinglas, Pulmonary and Critical Care Medicine, Johns Hopkins University, 1830 E. Monument St, Baltimore, MD 21205, USA; victor.dinglas{at}jhmi.edu

Abstract

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.

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

  • Contributors VDD, AET and DMN contributed to conception and design of the manuscript. VDD, LAF, EC, AET, COB and DMN contributed to analysis and interpretation of data. VDD drafted the manuscript, and all other authors critically revised it for important intellectual content. All authors gave final approval of the manuscript version to be published.

  • Funding This research was supported by the National Heart, Lung, and Blood Institute (grant number R24HL111895). AP was supported by KL2 Mentored Career Development Award grant number (4KL2TR001077-04).

  • Disclaimer The funding bodies had no role in the study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the manuscript for publication.

  • Competing interests None declared.

  • Ethics approval Johns Hopkins University Institutional Review Board.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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