Health-Related Quality of Life in Patients with Idiopathic Pulmonary Fibrosis

Purpose Idiopathic pulmonary fibrosis (IPF) produces symptoms and activity limitations that impair health-related quality of life (HRQOL). The Patient-Reported Outcomes Measurement Information System ® (PROMIS ® ) includes measures of self-reported health and HRQOL for a range of conditions. This study evaluated the HRQOL of individuals with IPF using PROMIS measures and examined associations between HRQOL and key symptoms or supplemental oxygen need. Methods Individuals who reported being told by a doctor that they have IPF completed an online battery of measures at baseline and 7–10 days later (for test–retest reliability). Measures included a brief survey of demographic and health-related questions, the PROMIS-29 profile, the Modified Medical Research Council Dyspnea Scale (MMRC), PROMIS dyspnea severity short form, A Tool to Assess Quality of life in IPF (ATAQ-IPF) and one cough item from the Functional Assessment of Chronic Illness Therapy (FACIT). Results 220 individuals were included in the final sample. Except for sleep disturbance, all PROMIS domain scores significantly ( p