Developing Quality-Weighted Hospital-Free Days as a Novel, Patient-Centered Outcome for Trials for Patients with Acute Respiratory Failure (QHARP)

This project aims to design and evaluate a new outcome measure for studies of patients with acute respiratory failure (ARF). ARF is becoming more common among critically ill patients, but at the same time mortality rates from ARF are declining. Survivors experience significant health impacts because of ARF, and the survivor population is growing. To improve long-term outcomes for these patients, we need to know more about their well-being as they recover. In this study, we plan to develop a new way of measuring the outcome of an ARF patient’s illness. Our goal is to design a measure that is patient-centered and can be used effectively in studies of large groups of patients. We also want this measure to be useful for assessing both restorative and palliative interventions.

Studies of critical illness often measure hospital-free days (HFDs), or days alive and outside an acute care hospital. The QHARP study is building on the measurement of HFDs to design and evaluate a measure of quality-weighted hospital-free days. We will do this by combining HFDs with patient-reported assessments of health-related quality of life.

The design of this study was informed by an expert panel of ARF survivors, family caregivers, and ARF clinicians and trialists. We asked our panel to share their perspectives on what is most important to measure about recovery from ARF. We also asked how to measure these important priorities, and how often. Using the methods identified by stakeholders, the QHARP team is now conducting a prospective cohort study to collect information about health-related quality of life from ARF survivors and their loved ones. We will use the data from this cohort study to validate quality-weighted hospital-free days as an outcome measure for ARF patients.

National Heart, Lung, and Blood Institute