, Volume 194, Issue 2, pp 227–234 | Cite as

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

  • Susan E. YountEmail author
  • Jennifer L. Beaumont
  • Shih-Yin Chen
  • Karen Kaiser
  • Katy Wortman
  • David L. Van Brunt
  • Jeffrey Swigris
  • David Cella



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.


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).


220 individuals were included in the final sample. Except for sleep disturbance, all PROMIS domain scores significantly (p < .01) differed by MMRC level. Supplemental oxygen users were more impaired than non-users in fatigue, physical function, and social role participation (p < 0.01). The test–retest reliability was acceptable to excellent (>0.7) for all scales, but was lower for sleep disturbance (0.64).


People with IPF report substantial deficits in HRQOL across a range of PROMIS domains, and deficits vary by dyspnea and cough severity. These deficits warrant monitoring in clinical practice and consideration when investigating new therapies. Further research is required to further evaluate the psychometric performance of the PROMIS-29 in IPF.


Health-related quality of life Idiopathic pulmonary fibrosis PROMIS 



The study was funded by Biogen.

Compliance with Ethical Standards

Conflict of Interest

Shih-Yin Chen is an employee and shareholder of Biogen. David Van Brunt was an employee of Biogen when the study was conducted and is a shareholder. This manuscript relates to study of disease for which Biogen is developing treatment. However, this manuscript in no way addresses the effects, or lack thereof, of any specific compound in development. The Northwestern University investigators received payment for bona-fide services in the execution of the study, but otherwise have no conflicts of interest to declare.

Ethical Approval

The Northwestern University Institutional Review Board determined that the study qualified for Exemption under United States Department of Health and Human Services CFR 46.101(b).


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Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Susan E. Yount
    • 1
    Email author
  • Jennifer L. Beaumont
    • 1
  • Shih-Yin Chen
    • 2
  • Karen Kaiser
    • 1
  • Katy Wortman
    • 1
  • David L. Van Brunt
    • 2
  • Jeffrey Swigris
    • 3
  • David Cella
    • 1
  1. 1.Department of Medical Social SciencesNorthwestern University Feinberg School of MedicineChicagoUSA
  2. 2.BiogenCambridgeUSA
  3. 3.Department of Medicine, Division of Pulmonary, Critical Care and Sleep MedicineNational Jewish HealthDenverUSA

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