Identifying the benefits and risks of emerging treatments for idiopathic pulmonary fibrosis: a qualitative study
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Updated: Apr 26, 2026
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Published on: June 20, 2025
John F P Bridges1, Victoria Federico Paly, Elizabeth Barker
1Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, 624 North Broadway, Baltimore, MD, 21205, USA, jbridge7@jhu.edu.
Objective:
Idiopathic pulmonary fibrosis (IPF) is a rare, progressive, and fatal disease, with very few therapeutic options. Given a paucity of qualitative research to the perspective of patients and other stakeholders in IPF, we sought to identify issues associated with the benefits and risks of emerging treatments and other issues relevant to design of a survey for assessing patient preferences for IPF treatments.
Methods:
Semi-structured key informant interviews were conducted, predominately via telephone, with a range of stakeholder perspectives identified through partnership with a national advocacy organization using a combination of purposive and snowball sampling. Stakeholders were asked guiding questions related to emerging trends impacting IPF patients, likely benefits and risks of emerging treatments, and the outcomes most relevant to patients. Detailed and de-identified field notes were analyzed using interpretive phenomenological analysis (IPA), and a taxonomy of key themes was developed.
Results:
A total of 20 interviews (participation rate 63%) were conducted with patients/advocates/caregivers (n = 7), providers/researchers (n = 8), and experts associated with policy/industry (n = 5). All interviewees expressed great hope with regards to emerging treatments. Three super-ordinate themes emerged: impact of emerging therapies (spanning the benefits, risks, and unintended consequences of emerging therapies); documenting the patient experience (spanning measuring patient-reported outcomes and quality of life and understanding the burden of disease); and coping with disease progression (including symptom mitigation, lung transplantation, and end-of-life considerations).
Conclusions:
In identifying issues associated with emerging IPF treatments, we demonstrate the value of qualitative research in understanding the views of diverse stakeholders and in providing a basis for future survey research. As such, qualitative methods should play an important role in understanding the benefits and risks of emerging therapies and in promoting patient-centered drug development.
Insights
Qualitative research explored patient and stakeholder perspectives on emerging treatments for idiopathic pulmonary fibrosis (IPF). Findings inform patient-centered drug development and highlight the need to understand treatment benefits, risks, and patient experiences.
Area of Science:
- Pulmonary Medicine
- Qualitative Research Methods
- Patient-Centered Care
Background:
- Idiopathic pulmonary fibrosis (IPF) is a rare, progressive, and fatal lung disease with limited treatment options.
- There is a significant need for qualitative research to understand patient and stakeholder perspectives on emerging IPF therapies.
Purpose of the Study:
- To identify issues related to the benefits and risks of emerging IPF treatments.
- To gather insights for designing patient preference surveys for IPF therapies.
Main Methods:
- Semi-structured key informant interviews were conducted with diverse stakeholders (patients, providers, policy experts).
- Interpretive phenomenological analysis (IPA) was used to analyze interview data and develop key themes.
Main Results:
- Interviews revealed significant hope regarding emerging IPF treatments.
- Key themes included the impact of therapies (benefits, risks, consequences), documenting the patient experience (PROs, quality of life, disease burden), and coping with disease progression (symptoms, transplant, end-of-life).
Conclusions:
- Qualitative research is valuable for understanding diverse stakeholder views on emerging IPF treatments.
- These findings provide a foundation for future survey research and promote patient-centered drug development.
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