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The following is a summary of “Perspectives of people living with idiopathic pulmonary fibrosis: a qualitative and quantitative study,” published in the May 2025 issue of BMC Pulmonary Medicine by Graham et al. 

Antifibrotic therapies pirfenidone and nintedanib were approved for idiopathic pulmonary fibrosis (IPF) in 2014, yet by that time, only about 25% of individuals with IPF in the United States had received them.  

Researchers conducted a retrospective study to explore the burden and treatment impact of IPF from the perspective of those living with the condition.  

They undertook qualitative interviews of the individuals diagnosed with IPF to examine their views on diagnosis and disease management. Interview transcripts were reviewed to identify key themes and topics. Representative quotations were chosen for inclusion. Findings informed the creation of a 74-item online survey, which was completed by a broader group of individuals living with IPF. Quantitative data from the survey were evaluated using 95% CIs and Z tests.  

The results showed that 16 individuals living with IPF participated in qualitative interviews, with direct quotes used to identify themes and inform survey stimuli. A total of 90 additional individuals living with IPF completed the online survey. Among the participants, 52% were male, 54% used supplemental oxygen, and 34% had never received an antifibrotic treatment. Key sources of information about their IPF diagnosis included healthcare providers, the internet, and support groups. Most participants reported experiencing shortness of breath, fatigue, or cough, with over 40% considering these symptoms to be highly burdensome. The primary reason for not initiating antifibrotic treatment was waiting for symptoms to worsen. Of those receiving antifibrotic treatment, 78% expressed that the medication gave them hope despite nearly 90% experiencing at least one side effect. In some cases, participants also discussed lung transplantation as a potential future option, highlighting the progressive nature of IPF and the limited long-term efficacy of current therapies. 

Investigators concluded that most individuals with IPF faced considerable difficulties because of their condition and its management, which significantly diminished their QoL. 

Source: bmcpulmmed.biomedcentral.com/articles/10.1186/s12890-025-03689-8