Living with idiopathic pulmonary fibrosis an in-depth qualitative survey of European patients

2011 
Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive, and fatal lung disease of unknown origin. Despite recent advancements, the diagnosis and management of IPF remains a distinct clinical challenge; as a result, patients often experience considerable delays in receiving an accurate diagnosis and confusion regarding prognosis and the availability of treatment options. In order to gain further insights regarding patients' perspectives on the diagnostic process, disease education, emotional well-being, and quality of life, we conducted a qualitative in-depth survey among IPF patients in Europe. Patients with a physician-confirmed IPF diagnosis were recruited to participate in an in-depth interview conducted by a trained facilitator who used a qualitative topic guide. A total of 45 patients from 5 European countries participated in the survey. The median reported time from initial presentation to confirmed diagnosis of IPF was 1.5 years (range <1 week to 12 years); in 58% of cases there was a delay ...
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