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

Gadi Schoenheit, Ian Becattelli, Alan H Cohen
Chronic Respiratory Disease 2011, 8 (4): 225-31
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 of >1 year between initial presentation and a confirmed diagnosis of IPF. Additionally, 55% of patients reported consulting ≥3 physicians before receiving an IPF diagnosis. Patient satisfaction with medical care and disease education appeared to be higher among patients who were receiving care at a recognized center of excellence. Patients generally had reasonable expectations regarding the goals of therapy, with most recognizing the irreversibility of the disease and the limited prospects for achieving a cure. The most common unmet needs cited by participants were disease education resources, access to centers of excellence, and familial support programs. Our findings suggest that patients with IPF commonly experience protracted delays in receiving an accurate diagnosis and generally perceive the level of medical care as suboptimal, despite expressing reasonable expectations regarding the goals of therapy. These results support the need for further improvement in the areas of diagnosis, disease management, and patient education.

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