Patient reported distress can aid clinical decision making in idiopathic pulmonary fibrosis: analysis of the PROFILE cohort
File(s)13993003.01925-2018.full.pdf (4.14 MB)
Accepted version
Author(s)
Type
Journal Article
Abstract
Idiopathic pulmonary fibrosis is a progressive and fatal interstitial lung disease. We aimed to determine if patient response to a palliative assessment survey could predict disease progression or death.We undertook a cross-sectional study in a UK clinical cohort of incident cases. Rasch-based methodology provided a disease distress value from an abridged 11 item model of the original 45 item survey. Distress values were compared with measures of lung function. Disease progression or mortality alone was predicted at twelve months from survey completion, with risk of death assessed at three, six and twelve months.Disease distress values were negatively correlated with lung function (r=-0.275 percent predicted DLCO). Expected survey scores computed from distress values could distinguish disease progression, 8.8 (p=0.004), and people who died, 10.2 (p=0.002), from those who did not progress, 6.9. Actual survey scores predicted disease progression and mortality with an area under the curve of 0.60 and 0.64, respectively. Each point increment in actual score increased risk of twelve-month mortality by 10%, almost 43% of people scoring above 18 did not survive beyond 105 days.We define a short questionnaire that can score disease distress and predict prognosis, assisting clinical decision making in progressive fibrosis.
Date Issued
2019-05-09
Date Acceptance
2019-03-01
ISSN
0903-1936
Publisher
European Respiratory Society
Journal / Book Title
European Respiratory Journal
Volume
53
Issue
5
Copyright Statement
© 2019 ERS.
Identifier
https://www.ncbi.nlm.nih.gov/pubmed/30846471
13993003.01925-2018
Subjects
11 Medical and Health Sciences
Respiratory System
Publication Status
Published
Coverage Spatial
England
Article Number
ARTN 1801925
Date Publish Online
2019-03-07