September 29, 2026
From people’s experiences to evidence for change
At Action for Pulmonary Fibrosis, we believe that people affected by pulmonary fibrosis should help shape the research, services and policies that affect their lives.
That is why APF designed and funded our State of the Nation survey. A total of 1,270 people responded, including 937 people living with PF, as well as people caring for someone with PF and people bereaved by the disease.
Their experiences have already helped APF identify where care needs to improve. Now, further analysis of the survey findings has been published in a peer-reviewed academic journal, giving clinicians, researchers and policymakers new evidence to draw on and strengthening the case for improvements in care.
Women reported different experiences
One of the clearest findings was that women and men reported different experiences of diagnosis and treatment.
Women reported waiting longer after first going to primary care before they were referred to a respiratory specialist. Across PF, women had typically seen primary care three times about their symptoms before referral, compared with twice for men.
More than one in four women (26.48%) said their initial health concerns were not listened to or taken seriously, compared to around one in eight men (11.71%).
There were differences in people’s experiences of treatment too. Among those taking antifibrotic medicines, women were more likely to report nausea, vomiting and headaches.
These findings do not tell us that being a woman caused these experiences. But they do raise important questions about whether PF is always recognised, investigated and managed fairly.
There is no single experience of pulmonary fibrosis
The research also reinforces something people affected by PF know well: pulmonary fibrosis does not affect everybody in the same way.
Symptoms varied between different types of PF. For example, breathlessness was reported more often by people with hypersensitivity pneumonitis than people with IPF, while cough was more common among people with sarcoidosis.
Fatigue was reported more often by people with COVID-19-related PF and sarcoidosis, while people with rheumatoid arthritis-associated interstitial lung disease and sarcoidosis, were more likely to have unexplained weight loss more often compared to people with IPF.
People with hypersensitivity pneumonitis and occupational PF also reported misdiagnosis more frequently than people with IPF.
Experience different by age too, with diarrhoea more highly report as a side effect of antifibrotic treatment by people diagnosed at a younger age.
These findings underline the importance of recognising that PF can present differently from person to person. People’s concerns need to be heard, referral to specialist services needs to happen promptly, and treatment and support should reflect individual needs rather than assumptions about a “typical” person with PF.
Building evidence that can influence care
The publication gives APF further evidence to use in conversations with healthcare professionals, researchers, the NHS and policymakers about how PF care can improve.
It also means people who took part in the survey can see their experiences being carried forward. Their responses are not sitting in a report. They are helping build a body of evidence that APF can use to argue for change.
Bradley Price, Director of Policy, Research and Involvement at Action for Pulmonary Fibrosis and senior author of the study, said:
“This research shows the direct experience of people affected by pulmonary fibrosis. By looking more closely at what they shared, we have found important differences that need attention, including women having to return to primary care more often before referral and being more likely to feel that their concerns were not taken seriously. These findings show where care needs to improve, so women are listened to and referred to a specialist sooner.
“Information like this matters because it gives us something concrete to change. APF can now use this evidence to press for people to be listened to, recognised earlier and referred more quickly, wherever they live and whatever type of pulmonary fibrosis they have.”
What happens next
Academic publication is not the end of this work.
APF will use the findings to support earlier recognition of PF in primary care, faster and fairer referral to specialist services, better recognition of how PF may affect women, and improved management of treatment side effects.
This is how APF can make the experiences people share with us count: by listening carefully, turning those experiences into robust evidence, and using that evidence to help change care.
The study, Patient-Reported Experiences of Pulmonary Fibrosis in the UK: The role of sex and disease subtypes in symptomology, diagnosis and care, was published in Therapeutic Advances in Respiratory Disease on September 23, 2026. Read the full study here.