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Overview

RATIONALE: Hospital-free days (HFDs), a measure of the number of days alive spent outside the hospital, is increasingly used as an endpoint in studies of patients with acute respiratory failure (ARF) or other critical and serious illnesses. Current approaches to measuring HFDs do not account for decrements in functional status or quality of life that ARF survivors and family members value.

OBJECTIVES: To develop an acceptable approach to measure quality-weighted HFDs using patient-reported outcomes.

METHODS: We conducted a four-round modified Delphi process among ARF experts: those with lived or professional experience. Experts rated survivorship domains, instrument and data collection characteristics, and methods to translate responses into quality-weighted HFDs. The consensus threshold was that ⩾70% of respondents rated an item “totally acceptable” or “acceptable” and ⩽15% of respondents rated the item “totally unacceptable,” “unacceptable,” or “slightly unacceptable.”

RESULTS: Fifty-seven experts participated in round 1. Response rates were 82–93% for subsequent rounds. Priority survivorship domains were physical function and health-related quality of life. Participants reached a consensus that data collection during ARF recovery should take less than 15 minutes per assessment, allow surrogate completion when patients are unable, and continue for at least 24 months of follow-up. Using the EuroQol-5 Dimensions (EQ-5D) questionnaire to quality weight HFDs met consensus criteria for acceptability. A majority of panelists preferred quality-weighted HFDs to unweighted HFDs or survival for use in future ARF studies.

CONCLUSIONS: Quality-weighting HFDs using patient and/or surrogate responses to the EQ-5D captured stakeholder priorities and was acceptable to this Delphi panel.

Sponsors

National Institutes of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)

Authors

Catherine L Auriemma, Maayra I Butt, Melanie Bahti, Jasmine A Silvestri, Ellen Solomon, Michael O Harhay, Tamar Klaiman, Marilyn M Schapira, Frances K Barg, Scott D Halpern