Core Outcome Measures in Effectiveness Trials

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

General Information

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.

Aim:
To evaluate the importance of specific outcome domains to acute respiratory distress syndrome (ARDS) survivors, their family members and clinical researchers.

Authors:
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

Publication

Journal:
Thorax
Volume:
Issue:
Pages:
-
Year:
2017
DOI:
Further Study Information

Date:
Funding source(s):
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).

Health Area

Disease Category
Lungs & airways

Disease Name
Respiratory failure

Target Population

Age Range
0 - 110

Sex
Either


Nature / type of Intervention
Any

Method(s)

Survey
Use of the International Classification of Functioning, Disability and Health (ICF)

Stakeholders Involved

Clinical experts
Consumers (patients)
Researchers

Study Type

Patient perspectives

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