• Michael Kreuter, Jeff Swigris, David Pittrow, Silke Geier, Jens Klotsche, Antje Prasse, Hubert Wirtz, Dirk Koschel, Stefan Andreas, Martin Claussen, Christian Grohé, Henrike Wilkens, Lars Hagmeyer, Dirk Skowasch, Joachim F Meyer, Joachim Kirschner, Sven Gläser, Herth Felix J F FJF Center for interstitial and rare lung diseases, pneumology and respiratory critical care medicine, Thoraxklinik, University of Heidelberg, Röntgenstr., Tobias Welte, Claus Neurohr, Martin Schwaiblmair, Matthias Held, Thomas Bahmer, Marion Frankenberger, and Jürgen Behr.
• Center for interstitial and rare lung diseases, pneumology and respiratory critical care medicine, Thoraxklinik, University of Heidelberg, Röntgenstr. 1, D-69126, Heidelberg, Germany. kreuter@uni-heidelberg.de.
• Resp Res. 2017 Jul 14; 18 (1): 139.

BackgroundThe 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.MethodsSix 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%.ResultsMean 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.ConclusionsOverall, 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 RegistrationThe INSIGHTS-IPF registry is registered at Clinicaltrials.gov ( NCT01695408 ).

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