The goal of this research is to develop and test a new way to measure health change in acute respiratory failure (ARF) patients who receive help to breathe from a machine (i.e., mechanical ventilation). In the first phase of this work, the researchers seek to develop a new outcome measure that aims to balance statistical properties for real-world research with patient perspectives. Through semi-structured interviews at 3 and 6 months following ARF survivors' intensive care unit discharge, the researchers will incorporate patient and caregiver perspectives about what is important to them in the months after their illness. The researchers will then test different approaches to categorizing the domains that patients report to develop a new patient-centered and valid outcome measure that captures post-ARF survivorship. The team will build on these findings in future phases of research, conducting a prospective cohort study to describe the epidemiology of the new outcome, generating important baseline data for future randomized controlled trials. In addition, the research team will leverage unstructured and structured data from the electronic health records of this cohort of patients to develop and validate a model to predict ARF outcomes, thereby enabling clinicians to give patients and caregivers better prognostic guidance.
National Institutes of Health