eprintid: 26187
rev_number: 12
eprint_status: archive
userid: 1589
dir: disk0/00/02/61/87
datestamp: 2019-05-22 15:03:59
lastmod: 2019-05-31 07:28:33
status_changed: 2019-05-22 15:03:59
type: article
metadata_visibility: show
creators_name: Kreuter, Michael
creators_name: Swigris, Jeff
creators_name: Pittrow, David
creators_name: Geier, Silke
creators_name: Klotsche, Jens
creators_name: Prasse, Antje
creators_name: Wirtz, Hubert
creators_name: Koschel, Dirk
creators_name: Andreas, Stefan
creators_name: Claussen, Martin
creators_name: Grohé, Christian
creators_name: Wilkens, Henrike
creators_name: Hagmeyer, Lars
creators_name: Skowasch, Dirk
creators_name: Meyer, Joachim F.
creators_name: Kirschner, Joachim
creators_name: Gläser, Sven
creators_name: Kahn, Nicolas
creators_name: Welte, Tobias
creators_name: Neurohr, Claus
creators_name: Schwaiblmair, Martin
creators_name: Held, Matthias
creators_name: Bahmer, Thomas
creators_name: Oqueka, Tim
creators_name: Frankenberger, Marion
creators_name: Behr, Jürgen
title: The clinical course of idiopathic pulmonary fibrosis and its association to quality of life over time: longitudinal data from the INSIGHTS-IPF registry
subjects: 610
divisions: 942000
keywords: Idiopathic pulmonary fibrosis, Patient-related outcomes, Cohort study, SQRQ
abstract: Background: Quality of life (QoL) is profoundly impaired in patients with idiopathic pulmonary fibrosis (IPF). However, data is limited regarding the course of QoL. We therefore analysed longitudinal data from the German INSIGHTS-IPF registry.

Methods: Clinical status and QoL were assessed at enrollment and subsequently at 6- to 12-months intervals. A range of different QoL questionnaires including the St. George’s Respiratory Questionnaire (SGRQ) were used.

Results: Data from 424 patients were included; 76.9% male; mean age 68.7 ± 9.1 years, mean FVC% predicted 75.9 ± 19.4, mean DLCO% predicted 36.1 ± 15.9. QoL worsened significantly during follow-up with higher total SGRQ scores (increased by 1.47 per year; 95% CI: 1.17 to 1.76; p < 0.001) and higher UCSD-SOBQ scores and lower EQ-5D VAS and WHO-5 scores. An absolute decline in FVC% predicted of > 10% was associated with a significant deterioration in SGRQ (increasing by 9.08 units; 95% CI: 2.48 to 15.67; p = 0.007), while patients with stable or improved FVC had no significantly change in SGRQ. Patients with a > 10% decrease of DLCO % predicted also had a significant increase in SGRQ (+ 7.79 units; 95% CI: 0.85 to 14.73; p = 0.028), while SQRQ was almost stable in patients with stable or improved DLCO. Patients who died had a significant greater increase in SGRQ total scores (mean 11.8 ± 18.6) at their last follow-up visit prior to death compared to survivors (mean 4.2 ± 18.9; HR = 1.03; 95% CI: 1.01 to 1.04; p < 0.001). All QoL scores across the follow-up period were significantly worse in hospitalised patients compared to non-hospitalised patients, with the worst scores reported in those hospitalised for acute exacerbations.

Conclusions: QoL assessments in the INSIGHTS-IPF registry demonstrate a close relationship between QoL and clinically meaningful changes in lung function, comorbidities, disease duration and clinical course of IPF, including hospitalisation and mortality.
date: 2019
publisher: BioMed Central
id_scheme: DOI
id_number: https://doi.org/10.1186/s12931-019-1020-3
ppn_swb: 1666511528
own_urn: urn:nbn:de:bsz:16-heidok-261878
language: eng
bibsort: KREUTERMICTHECLINICA2019
full_text_status: public
publication: Respiratory Research
volume: 20
number: 59
place_of_pub: London
pagerange: 1-13
issn: 1465-993X
citation:   Kreuter, Michael ; Swigris, Jeff ; Pittrow, David ; Geier, Silke ; Klotsche, Jens ; Prasse, Antje ; Wirtz, Hubert ; Koschel, Dirk ; Andreas, Stefan ; Claussen, Martin ; Grohé, Christian ; Wilkens, Henrike ; Hagmeyer, Lars ; Skowasch, Dirk ; Meyer, Joachim F. ; Kirschner, Joachim ; Gläser, Sven ; Kahn, Nicolas ; Welte, Tobias ; Neurohr, Claus ; Schwaiblmair, Martin ; Held, Matthias ; Bahmer, Thomas ; Oqueka, Tim ; Frankenberger, Marion ; Behr, Jürgen  (2019) The clinical course of idiopathic pulmonary fibrosis and its association to quality of life over time: longitudinal data from the INSIGHTS-IPF registry.  Respiratory Research, 20 (59).  pp. 1-13.  ISSN 1465-993X     
document_url: https://archiv.ub.uni-heidelberg.de/volltextserver/26187/1/12931_2019_Article_1020.pdf