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Observational Study
. 2017 Jul 14;18(1):139.
doi: 10.1186/s12931-017-0621-y.

Health related quality of life in patients with idiopathic pulmonary fibrosis in clinical practice: insights-IPF registry

Michael Kreuter  1   2 , Jeff Swigris  3 , David Pittrow  4 , Silke Geier  5 , Jens Klotsche  6 , Antje Prasse  7   8   9 , Hubert Wirtz  10 , Dirk Koschel  11 , Stefan Andreas  12 , Martin Claussen  13   9 , Christian Grohé  14 , Henrike Wilkens  15 , Lars Hagmeyer  16 , Dirk Skowasch  17 , Joachim F Meyer  18 , Joachim Kirschner  19 , Sven Gläser  20   21 , Felix J F Herth  22   9 , Tobias Welte  7   9 , Claus Neurohr  23   9 , Martin Schwaiblmair  24 , Matthias Held  25 , Thomas Bahmer  13   9 , Marion Frankenberger  23   26   9 , Jürgen Behr  23   26   9
Affiliations
Observational Study

Health related quality of life in patients with idiopathic pulmonary fibrosis in clinical practice: insights-IPF registry

Michael Kreuter et al. Respir Res. .

Abstract

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 ).

Keywords: Cohort study; Idiopathic pulmonary fibrosis; Patient related outcomes; Psychometrics.

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Conflict of interest statement

Ethics approval and consent to participate

The study materials were approved by the Ethics Committee of the Medical Faculty, Technical University of Dresden (EK 255082012), and by further local ethic committees as per local requirements.

Consent for publication

Not applicable.

Competing interests

MK reports grants and personal fees from Roche/InterMune, grants and personal fees from Boehringer Ingelheim, outside the submitted work; AP reports grants and personal fees from Roche/InterMune, grants and personal fees from Boehringer Ingelheim, outside the submitted work; HuWi reports personal fees from Boeringer Ingelheim, personal fees from Roche, outside the submitted work; MC reports personal fees from Boehringer Ingelheim Pharma GmbH, outside the submitted work; DP reports personal fees outside the submitted work from Actelion, Bayer, Boehringer Ingelheim, GSK, Novartis, and MSD.SV reports personal fees from Boehringer Ingelheim, personal fees from Roche Pharma, personal fees from Actelion Pharma, grants and personal fees from Novartis Pharma, personal fees from Berlin Chemie, personal fees from Astra, outside the submitted work; HeWi reports personal fees from Boehringer, personal fees from Roche, during the conduct of the study; personal fees from Bayer, personal fees from Biotest, personal fees from Actelion, personal fees from GSK, personal fees from Pfizer, outside the submitted work; CN Claus Neurohr reports honoraria for lectures and serving on advisory boards from Boehringer Ingelheim and Roche Pharma. SA reports case payments from Boehringer Ingelheim, during the conduct of the study; personal fees from Boehringer Ingelheim, personal fees from Roche, outside the submitted work. TW reports grants from Boehringer, during the conduct of the study; TB reports grants from German Center for Lung Research (DZL), personal fees from Roche, outside the submitted work; JB received grants from Boehringer Ingelheim, InterMune, and Actelion and personal fees for consultation or lectures from Actelion, Bayer, Boehringer-Ingelheim, InterMune and Roche. He is member of the international IPF guideline committee. All other authors declared that they have no competing interests.

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Figures

Fig. 1
Fig. 1
QoL Scores by Disease severity (* p < 0.05 in reference to the first category)
See this image and copyright information in PMC

References

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