Patient-reported experiences of pulmonary fibrosis in the UK: The role of sex and disease subtypes in symptomology, diagnosis and care.

BackgroundPulmonary fibrosis (PF) is associated with substantial symptom burden, complex diagnostic pathways and varied access to specialist services. It is important to understand patient and carer experiences to highlight disparities and inform improvements in care.ObjectivesTo explore reported insights from patients and carers regarding PF symptomology, initial healthcare experiences, access to support services, and whether experiences differ by sex and PF subtype.DesignA cross-sectional analysis of the 2025 PF State of the Nation Survey, conducted by Action for Pulmonary Fibrosis.MethodsUsing the survey results which included information from 1,270 individuals (73.78% patients) with lived experience of PF. Differences in symptoms, diagnostic pathways and patient experience were examined using Chi-squared and Fishers exact tests.ResultsRespondents with idiopathic pulmonary fibrosis (IPF) were more likely to be male, whilst female dominance was observed in those reporting diagnosis of non-IPF-PF. Males were diagnosed at an older age than females, were referred to respiratory services more quickly, and had fewer primary care appointments prior to referral. More than 90% of the cohort reported symptoms prior to diagnosis, but symptomology differed by PF subtype; breathlessness was more commonly reported by those with hypersensitivity pneumonitis (p=0.004) and cough was more commonly reported by people with sarcoidosis (p=0.025). Almost one quarter (24.93%) of people reported symptoms to a physician only after experiencing them for at least one year. Treatment burden was high, antifibrotic side effects were common and differences with respect to age and sex were observed.ConclusionsImportant differences in symptom burden, diagnostic experiences and access to support exist across PF subtypes and between sexes. These findings highlight potential weaknesses in current diagnostic pathways, as well as unmet needs related to referral delays, treatment side effects and support services. Enhancing patient-centred care and targeted service provision may help to reduce inequalities and improve outcomes.