title: Health-Related Quality of Life in Patients with Idiopathic Pulmonary Fibrosis.
abstract: OBJECTIVE
  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.
authors: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, 27th Floor, Chicago, IL, 60611, USA. s-yount@northwestern.edu.
authors: Susan E
authors: SE
authors: Yount
authors: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, 27th Floor, Chicago, IL, 60611, USA.
authors: Jennifer L
authors: JL
authors: Beaumont
authors: Biogen, 225 Binney Street, Cambridge, MA, 02142, USA.
authors: Shih-Yin
authors: SY
authors: Chen
authors: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, 27th Floor, Chicago, IL, 60611, USA.
authors: Karen
authors: K
authors: Kaiser
authors: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, 27th Floor, Chicago, IL, 60611, USA.
authors: Katy
authors: K
authors: Wortman
authors: Biogen, 225 Binney Street, Cambridge, MA, 02142, USA.
authors: David L
authors: DL
authors: Van Brunt
authors: Department of Medicine, Division of Pulmonary, Critical Care and Sleep Medicine, National Jewish Health, 1400 Jackson Street, Denver, CO, 80206, USA.
authors: Jeffrey
authors: J
authors: Swigris
authors: Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Avenue, 27th Floor, Chicago, IL, 60611, USA.
authors: David
authors: D
authors: Cella
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017281:Cost of Illness; D003371:Cough / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology; D004417:Dyspnea / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology; D005221:Fatigue / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology; D005260:Female; D006304:Health Status; D006801:Humans; D054990:Idiopathic Pulmonary Fibrosis / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D010102:Oxygen Inhalation Therapy; D000071066:Patient Reported Outcome Measures; D011788:Quality of Life; D012720:Severity of Illness Index; D058992:Social Participation; D013997:Time Factors
keywords: Health-related quality of life; Idiopathic pulmonary fibrosis; PROMIS