title: Health related quality of life in patients with idiopathic pulmonary fibrosis in clinical practice: insights-IPF registry creator: Kreuter, Michael creator: Swigris, Jeff creator: Pittrow, David creator: Geier, Silke creator: Klotsche, Jens creator: Prasse, Antje creator: Wirtz, Hubert creator: Koschel, Dirk creator: Andreas, Stefan creator: Claussen, Martin creator: Grohé, Christian creator: Wilkens, Henrike creator: Hagmeyer, Lars creator: Skowasch, Dirk creator: Meyer, Joachim F. creator: Kirschner, Joachim creator: Gläser, Sven creator: Herth, Felix J. F. creator: Welte, Tobias creator: Neurohr, Claus creator: Schwaiblmair, Martin creator: Held, Matthias creator: Bahmer, Thomas creator: Frankenberger, Marion creator: Behr, Jürgen subject: ddc-610 subject: 610 Medical sciences Medicine description: Background: The INSIGHTS-IPF registry provides one of the largest data sets of clinical data and self-reported patient related outcomes including health related quality of life (QoL) on patients with idiopathic pulmonary fibrosis (IPF). We aimed to describe associations of various QoL instruments between each other and with patient characteristics at baseline. Methods: Six hundred twenty-three IPF patients with available QoL data (St George’s Respiratory Questionnaire SGRQ, UCSD Shortness-of-Breath Questionnaire SoB, EuroQol visual analogue scale and index EQ-5D, Well-being Index WHO-5) were analysed. Mean age was 69.6 ± 8.7 years, 77% were males, mean disease duration 2.0 ± 3.3 years, FVC pred was 67.5 ± 17.8%, DLCO pred 35.6 ± 17%. Results: Mean points were SGRQ total 48.3, UCSD SoB 47.8, EQ-5D VAS 66.8, and WHO-5 13.9. These instruments had a high or very high correlation (exception WHO-5 to EQ-5D VAS with moderate correlation). On bivariate analysis, QoL by SGRQ total was statistically significantly associated with clinical symptoms (NYHA; p < 0.001), number of comorbidities (p < 0.05), hospitalisation rate (p < 0.01) and disease severity (as measured by GAP score, CPI, FVC and 6-min walk test; p < 0.05 each). Multivariate analyses showed a significant association between QoL (by SGRQ total) and IPF duration, FVC, age, NYHA class and indication for long-term oxygen treatment. Conclusions: Overall, IPF patients under real-life conditions have lower QoL compared to those in clinical studies. There is a meaningful relationship between QoL and various patient characteristics. Trial registration: The INSIGHTS-IPF registry is registered at Clinicaltrials.gov (NCT01695408). publisher: BioMed Central date: 2017 type: Article type: info:eu-repo/semantics/article type: NonPeerReviewed format: application/pdf identifier: https://archiv.ub.uni-heidelberg.de/volltextserverhttps://archiv.ub.uni-heidelberg.de/volltextserver/23236/1/12931_2017_Article_621.pdf identifier: DOI: identifier: urn:nbn:de:bsz:16-heidok-232366 identifier: 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 ; Herth, Felix J. F. ; Welte, Tobias ; Neurohr, Claus ; Schwaiblmair, Martin ; Held, Matthias ; Bahmer, Thomas ; Frankenberger, Marion ; Behr, Jürgen (2017) Health related quality of life in patients with idiopathic pulmonary fibrosis in clinical practice: insights-IPF registry. Respiratory Research, 18 (139). pp. 1-10. ISSN 1465-993X relation: https://archiv.ub.uni-heidelberg.de/volltextserver/23236/ rights: info:eu-repo/semantics/openAccess rights: Please see front page of the work (Sorry, Dublin Core plugin does not recognise license id) language: eng