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DOI: 10.1055/s-0037-1619192
Quality of life trajectory in patients with idiopathic pulmonary fibrosis (IPF): longitudinal QoL assessment of the INSIGHTS-IPF registry
Publication History
Publication Date:
21 February 2018 (online)
Rationale:
Quality of life (QoL) is profoundly impaired in IPF patients; however, little is known about how their QoL changes over time. We analysed longitudinal data, gathered under real-world conditions, to improve understanding of the trajectory of QoL and its relationship to other variables in IPF patients.
Methods:
Data from 359 patients enrolled in an observational registry were included (77% male; mean values: age 68.5 ± 8.9 years, FVC% 68.1 ± 17.9, DLCO% 36.7 ± 16.8. QoL was assessed by questionnaires including the St. George's Respiratory Questionnaire (SGRQ) at enrollment and yearly thereafter. Mixed Models were used for the analyses of QoL in follow-up.
Results:
Mean follow up was 16.0 ± 9.1 months. The SGRQ significantly worsened, i.e. increased during follow-up (increase of 2.7 per year (95%CI: 1.4 – 4.0). An absolute decline in FVC% predicted ≥10% was associated with a significant deterioration in SGRQ by 13.7 (SD = 13.6), while patients with stable or improved FVC had a relevant improvement in SGRQ (mean =-5.4). Patients with a decrease of DLCO≥15% or of 6MWD≥50 m had a significant increase (i.e. deterioration) in SGRQ by 15.7 (SD = 14.5) and 8.9 (SD = 14.8) in follow-up, respectively. In multivariate analysis by a mixed model, predictors of a QoL worsening were older age, lower FVC, lower DLCO, high number of comorbid diseases and longer disease duration. Patients who died had a significant greater increase in SGRQ (mean 11.2 SD = 15) before death compared to patients who survived (mean 3.1, SD = 14.2). A similar pattern could be seen for mortality due to exacerbations (increase by 9.2 versus 4.5 for patients with and without exacerbations). If the physician judged the clinical course of IPF as a rapid progression, the patients SQRQ increased significantly in follow-up in mean by 15.1 (SD = 14.2). In contrast, patients with a judgement of stable disease reported a significantly smaller increase, i.e. less deterioration of SGRQ during follow-up (mean = 9.0, SD = 12.2).
Conclusions:
QoL assessement in the INSIGHTS-IPF registry demonstrates a close relationship between QoL and changes of pulmonary physiology, numbers of comorbidities, disease duration and clinical course of IPF including mortality.
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