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. 2025 May 8;25(1):221.
doi: 10.1186/s12890-025-03689-8.

Perspectives of people living with idiopathic pulmonary fibrosis: a qualitative and quantitative study

Camilla S Graham  1 , Brianna Bisson  1   2 , Jessica Shore  3 , Emily Pardy  1 , Frank Salisbury  1 , Lisa Lancaster  4 , Tejaswini Kulkarni  5
Affiliations

Perspectives of people living with idiopathic pulmonary fibrosis: a qualitative and quantitative study

Camilla S Graham et al. BMC Pulm Med. .

Abstract

Background: The antifibrotic therapies, pirfenidone and nintedanib, have been approved since 2014 for idiopathic pulmonary fibrosis (IPF), but in the United States only a quarter of people living with IPF have ever been exposed to an antifibrotic. Understanding the burden and consequences of the disease and its treatment from the perspective of people living with IPF may facilitate improved education and outreach for them and their providers.

Methods: Qualitative interviews with people living with IPF explored perspectives on the diagnosis and management of IPF. Transcripts were analyzed to derive themes and topics, and illustrative quotes were selected for presentation. Data were developed into a 74-item on-line survey taken by additional people living with IPF. Quantitative survey data were analyzed with 95% confidence intervals and Z tests.

Results: Sixteen people living with IPF underwent qualitative interviews. Direct quotes were used to derive and support themes, and survey stimuli are presented. Ninety additional people living with IPF responded to the on-line survey. 52% of survey participants were male, 54% used supplemental oxygen, and 34% had never been exposed to an antifibrotic. Top sources of information about their IPF diagnosis were their healthcare provider, the internet, and support groups. Most participants had one or more of shortness of breath, fatigue, or cough and over 40% described these symptoms as very burdensome. The most common reason for not starting an antifibrotic was, "I am waiting to start treatment until my symptoms worsen." For those treated with antifibrotics, (78%) agreed with a statement that their antifibrotic gives them hope even though around 90% had at least one side effect.

Conclusions: Most individuals living with IPF experienced significant challenges due to their disease and its treatment, that substantially impacted their quality of life. A better understanding of these challenges can facilitate patient-centered and shared decision-making, ultimately enhancing outcomes and satisfaction for people living with IPF.

Keywords: Antifibrotic therapy; Idiopathic pulmonary fibrosis; Oxygen therapy; Qualitative research; Quality of life.

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Conflict of interest statement

Declarations. Ethics approval and consent to participate: Both the qualitative and quantitative protocols were submitted to the Institutional Review Board Western-Copernicus Group (Puyallup, WA; references 1–1669153-1 and 1–1719988-1), and this study was determined exempt under 45 CFR § 46.104(d)(2). The study was conducted in accordance with the principles of the Declaration of Helsinki (Ethical Principles for Medical Research Involving Human Subjects). A third party vendor described risks to participation and obtained consent to participate in the qualitative interviews. For the on-line survey, consent was also obtained prior to participation (Additional file 2 Survey Questionnaire). Consent for publication: Not applicable. Competing interests: C.G., E.P, B.B. and F.S are current or former employees of PureTech Health and L.L and T.K are consultants to PureTech Health.

Figures

Fig. 1
Fig. 1
Top Sources of Information about IPF. Legend 1: All N=90 participants were asked to rank avenues of information, from the most useful for discovering information about their IPF diagnosis (Rank 1) to the least useful (Rank 5). Survey participants were only required to rank 1 of the options. This figure shows the proportion of all participants who ranked each source of information as one of their top 3 most useful sources
Fig. 2
Fig. 2
Participants Reporting Symptoms and Burden Associated with IPF. Legend 2: All N=90 participants were asked to select which symptoms of IPF they have experienced. Only participants who reported experiencing a given symptom were asked about its burden.*"Very burdensome"= Percent of participants who rated each symptom a score of 6 or 7 on a 7-point scale of burden
Fig. 3
Fig. 3
Reasons for not Starting an Antifibrotic Medication, of Those Never Treated with an Antifibrotic. Legend 3: Participants who were never treated with an antifibrotic (N=31) were asked to rank reasons for not starting an antifibrotic, from the most relevant reason (Rank 1) to the least relevant reason (Rank 5). Survey participants were only required to rank one of the options. This figure shows all reasons that >1 participant selected
Fig. 4
Fig. 4
a Side Effects and Burden Associated with Pirfenidone. Legend 4a: Participants who have ever taken pirfenidone to manage their IPF (N=30) were asked about the side effects they have experienced with that medication. Only participants who selected a given side effect were asked about its burden. *"Very burdensome"= Percent of participants who rated each side effect a score of 6 or 7 on a 7-point scale. b Side Effects and Burden Associated with Nintedanib. Legend 4b: Participants who have ever taken nintedanib to manage their IPF (N=38) were asked about the side effects they have experienced with that medication. Only participants who selected a given side effect were asked about its burden. *"Very burdensome"= Percent of participants who rated each side effect a score of 6 or 7 on a 7-point scale
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References

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