The journey to diagnosis in patients with pulmonary fibrosis
In 2019, EU-IPFF carried out a survey of patients to understand how patients experience the process of diagnosis in 12 European countries. The survey was undertaken jointly with Action for Pulmonary Fibrosis (UK) and supported by the pharmaceutical company Galapagos
The results confirmed our worst expectations:
- 41% of pulmonary fibrosis patients had to wait more than a year to be diagnosed
- 37% of patients were misdiagnosed at least once
- The journey to diagnosis is an anxious and worrying time for patients.
In EU-IPFF’s view, it is unacceptable for pulmonary fibrosis patients to wait so long to be diagnosed, given their poor prognosis. People should be diagnosed and treated more quickly. We need a time-bound path to diagnosis and treatment for pulmonary fibrosis patients similar to that for cancer patients in most European countries.
The results are now public in various versions - an infographis and a video in English with subtitles in different languages
Please find the videos, infographics and the full report below
