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. 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%. 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. 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. The INSIGHTS-IPF registry is registered at Clinicaltrials.gov (
 NCT01695408
 ).

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

This article contains highlights and a selection of the scientific advances from the European Respiratory Society's Clinical Assembly (Assembly 1 and its six respective groups) that were presented at the 2017 European Respiratory Society International Congress in Milan, Italy. The most relevant topics from each of the groups will be discussed, covering a wide range of areas including clinical problems, rehabilitation and chronic care, thoracic imaging, interventional pulmonology, diffuse and parenchymal lung diseases, and general practice and primary care. In this comprehensive review, the newest research and actual data as well as award-winning abstracts and highlight sessions will be discussed.

https://openres.ersjournals.com/content/erjor/5/1/00176-2018.full.pdf

European Respiratory Society International Congress 2017: highlights from the Clinical Assembly.

Methods: We conducted an international study of IPF diagnosis among a large group of physicians and compared their diagnostic performance to a panel of IPF experts (n=34). Participants evaluated 60 consecutive cases of interstitial lung disease. Diagnostic agreement was measured using weighted kappa coefficient (κw). Outcome distinctions between IPF and other diffuse lung diseases were used to validate diagnostic accuracy for first-choice diagnoses of IPF and were compared using the C-index. Results: 404 physicians completed the study. Agreement for IPF diagnosis was higher among expert physicians (κw =0.65 [IQR 0.53-0.72], P 20 years experience and MDT meeting attendance independently predicted prognostic accuracy of IPF diagnosis. The prognostic accuracy of academic physicians with >20 years experience (C-index=0.72, [IQR 0.0-0.73], p=0.229)) and non-university hospital physicians with more than 20 years experience, attending weekly MDT meetings (C-index=0.72, [IQR 0.70-0.72], p=0.052), did not differ significantly (p=0.229 and p=0.052 respectively) from the expert panel (C-index=0.74 [IQR 0.72-0.75]. Conclusion: Experienced respiratory physicians working at university-based institutions make diagnoses of IPF with similar prognostic accuracy to an international panel of IPF experts. Regular MDT meeting attendance improves the prognostic accuracy of experienced non-university practitioners to levels achieved by IPF experts.

Dominiue Valeyre

Papers

Accuracy of a clinical diagnosis of idiopathic pulmonary fibrosis. A study of 404 pulmonologists from 57 countries