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Erschienen in: Lung 2/2016

01.04.2016

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

verfasst von: Susan E. Yount, Jennifer L. Beaumont, Shih-Yin Chen, Karen Kaiser, Katy Wortman, David L. Van Brunt, Jeffrey Swigris, David Cella

Erschienen in: Lung | Ausgabe 2/2016

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Abstract

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 < .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).

Conclusions

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.
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Metadaten
Titel
Health-Related Quality of Life in Patients with Idiopathic Pulmonary Fibrosis
verfasst von
Susan E. Yount
Jennifer L. Beaumont
Shih-Yin Chen
Karen Kaiser
Katy Wortman
David L. Van Brunt
Jeffrey Swigris
David Cella
Publikationsdatum
01.04.2016
Verlag
Springer US
Erschienen in
Lung / Ausgabe 2/2016
Print ISSN: 0341-2040
Elektronische ISSN: 1432-1750
DOI
https://doi.org/10.1007/s00408-016-9850-y

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