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Patient reported distress can aid clinical decision making in idiopathic pulmonary fibrosis: analysis of the PROFILE cohort

Stewart, Iain; McKeever, Tricia; Braybrooke, Rebecca; Oballa, Eunice; Simpson, Juliet K; Maher, Toby M; Marshall, Richard P; Lukey, Pauline T; Fahy, William A; Jenkins, Gisli; Saini, Gauri

Patient reported distress can aid clinical decision making in idiopathic pulmonary fibrosis: analysis of the PROFILE cohort Thumbnail


Authors

Iain Stewart

TRICIA MCKEEVER tricia.mckeever@nottingham.ac.uk
Professor of Epidemiology and Medical Statistics

Rebecca Braybrooke

Eunice Oballa

Juliet K Simpson

Toby M Maher

Richard P Marshall

Pauline T Lukey

William A Fahy

Gisli Jenkins

Gauri Saini



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.

Citation

Stewart, I., McKeever, T., Braybrooke, R., Oballa, E., Simpson, J. K., Maher, T. M., …Saini, G. (2018). Patient reported distress can aid clinical decision making in idiopathic pulmonary fibrosis: analysis of the PROFILE cohort

Other Type Other
Acceptance Date Dec 13, 2018
Online Publication Date Dec 13, 2018
Publication Date Dec 13, 2018
Deposit Date Jun 6, 2019
Publicly Available Date Jun 28, 2019
DOI https://doi.org/10.1101/460626
Public URL https://nottingham-repository.worktribe.com/output/1882000
Related Public URLs https://www.biorxiv.org/content/10.1101/460626v2
Additional Information BioRxiv Preprint

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