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

doi:10.1136/thoraxjnl-2017-210234

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.

Authors

Victor D Dinglas^{1

2}, Caroline M Chessare^{1

2}, Wesley E Davis¹, Ann Parker^{1

2}, Lisa Aronson Friedman^{1

2}, Elizabeth Colantuoni^{1

3}, Clifton O Bingham^{4

5

6}, Alison E Turnbull^{1

2

7}, Dale M Needham^{1

2

8}

Affiliations

¹ Outcomes After Critical Illness and Surgery Group, Johns Hopkins University, Baltimore, Maryland, USA.
² Division of Pulmonary and Critical Care Medicine, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.
³ Department of Biostatistics, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA.
⁴ Johns Hopkins Arthritis Center, Johns Hopkins University, Baltimore, Maryland, USA.
⁵ Rheumatic Diseases Research Core Center, Johns Hopkins University, Baltimore, Maryland, USA.
⁶ Divisions of Rheumatology and Allergy and Clinical Immunology, Johns Hopkins University, Baltimore, Maryland, USA.
⁷ Department of Epidemiology, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, USA.
⁸ Department of Physical Medicine and Rehabilitation, School of Medicine, Johns Hopkins University, Baltimore, Maryland, USA.

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.

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

Grants and funding

R24 HL111895/HL/NHLBI NIH HHS/United States