This 2025 study explores how people with idiopathic pulmonary fibrosis (IPF) experience their diagnosis, treatment, and daily life. Using a combination of interviews and an online survey, the research team spoke to over 100 individuals in the United States living with IPF.
Participants described emotions ranging from shock and fear to frustration over unclear treatment options. Many noted that oxygen dependency, fatigue, and limited mobility affect their quality of life. While some had received antifibrotic therapy, others had never been offered it. One key insight is the reliance on online communities and support networks when medical information feels inaccessible.
The authors call for healthcare systems to better understand patients’ lived experiences, particularly around decision-making, emotional impact, and long-term care planning. The study encourages integrating real-world patient voices into clinical pathways and communication strategies.
