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.
Keywords: Depression, emotional support, idiopathic pulmonary fibrosis, patient feelings, patient perspective survey, social
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