Idiopathic Pulmonary Fibrosis: An EU Patient Perspective Survey

Idiopathic Pulmonary Fibrosis (IPF) is a chronic and progressive lung disease associated with a poor prognosis. A diagnosis of IPF dramatically impacts the life of patients. We conducted a qualitative survey to evaluate patients’ insight and emotions during and after diagnosis. Patients with a physician-confirmed IPF diagnosis participated in an indepth qualitative interview. Common projective techniques were used to reveal underlying feelings and attitudes, with the main objective to generate insights into patients’ emotions and journey, including symptoms, referral patterns, diagnosis process, and follow-up. Additionally, some patients participated in an online Insight Room where they could discuss the disease and its impact on quality of life. Word use related to living with IPF was analyzed. Forty-five patients from five European countries were interviewed. Based on groupings into coping approach and age, four segments of emotions were identified: “combative”, “dejected”, “serene”, and “stoic”. Patients in each of the segments approached the disease in different ways. At the time of diagnosis, patients experienced a range of emotions: devastation, confusion, trust, and apprehension. After diagnosis, three successive emotional phases were identified: coming to terms (diagnosis), reactive coping (acceptance), and proactive coping (ownership of condition). The conversational co-word Insight Room analysis identified four areas of patient concern: the physical problem, family support, the medical world and hope for research. Supporting the emotional status of patients should become a more integral part of the management of IPF at diagnosis as is the standard for other terminal conditions, such as cancer.