A new real world evidence study on Idiopathic pulmonary fibrosis (IPF) describes the high disease burden associated with IPF, highlights the need for early diagnosis, and emphasizes that current Finnish reimbursement restrictions prevent early care.

Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive fibrotic lung disease causing disrupted gas exchange, respiratory failure and death. The prevalence in Finland is estimated to be between 8.6 and 19 cases per 100 000 persons. Forced vital capacity (FVC), a spirometry test assessing the function of the lungs, can be used to measure disease severity, and patients are often grouped based on the FVC results as FVC >90 % predicted, FVC 50-90 % predicted, and FVC <50 % predicted. Currently, the reimbursement threshold for antifibrotic treatment in Finland is FVC 50-90 % predicted.


This retrospective registry-based study included 266 patients diagnosed with IPF in the Hospital District of Southwest Finland between 2005 and 2017 (n=993). Patients were identified based on high-resolution computer tomography and/or lung biopsy statements, as well as clinical diagnosis using structural data from the medical records and text mining. Lung function in the IPF patients was assessed by FVC at baseline and during follow-up. Medications, survival, and healthcare resource utilization and costs were extracted from the medical records.


The mean age at IPF diagnosis was 74 years and IPF was more common in men. The mean FVC was 77 % predicted, with 24 % of patients in the FVC >90 % predicted group, and 63 % in the FVC 50-90 % predicted group at baseline. No trend for improved FVC at baseline was observed over time. At the end of follow-up in 2017, 16 % of the patients had initiated antifibrotic medication and 42 % of the patients had died. The median survival time after IPF diagnosis was 5.0 years, but the survival was heavily influenced by the FVC category, with each percentage decline increasing the mortality risk by 4 %. Healthcare resource utilization was also correlated with disease severity, and in total IPF patients utilized 4.7 million euros worth of specialty care resources during the study period.


This study raises several considerations for the care of IPF patients in the future. First of all, one fourth of the patients in this study presented with mild disease (FVC >90 %) and were not entitled to modern IPF treatment reimbursement, even though clinical studies have clearly shown that early treatment initiation can postpone irreversible deteriorative changes in lung function. Furthermore, IPF guidelines emphasize the need for precise and earlier diagnosis, but surprisingly no trend for improved FVC at baseline was observed in this study covering over 10 years of data.

As both the economic and the humanistic burdens of disease worsen with advancing disease, it is of outmost importance to postpone FVC decline in order to increase the IPF patients’ quality of life.

Read more:

Forced Vital Capacity (FVC) decline, mortality and healthcare resource utilization in idiopathic pulmonary fibrosis, Lassenius MI, Toppila I, Pöntynen N, Kasslin L, Kaunisto J, Kilpeläinen M and Laitinen T. European Clinical Respiratory Journal (2019) 

Find more RWE study summaries here.