Patient experiences of idiopathic pulmonary fibrosis (IPF) in China: a multicentre qualitative study

Idiopathic pulmonary fibrosis (IPF) is a chronic progressive lung disease that profoundly impacts patients' daily lives. While pharmacological therapies continue to advance, less is known about how patients experience the burden of disease across different periods after IPF diagnosis, resulting in a lack of evidence for the development and optimisation of patient-centred intervention strategies. Therefore, this study aimed to explore how individuals with IPF experience the disease and its impact on daily life in China.

This multicentre qualitative study was conducted using semistructured interviews with participants from six geographic regions in China between November 2024 and March 2025. Participants were grouped by time since diagnosis to reflect different periods following diagnosis. Data were collected and analysed inductively and iteratively by using practical thematic analysis until thematic saturation was achieved.

53 participants were interviewed to explore the patient experience at different periods following IPF diagnosis. Thematic analysis identified that participants commonly reported the influence of IPF on quality of life, including (1) symptom experience, (2) sleep, (3) eating habits, (4) physical activity, (5) social participation, (6) psychological well-being and (7) financial status. Cough and breathlessness were consistently reported as the most troubling symptoms, often accompanied by psychological challenges related to diagnosis and disease progression.

The findings highlight the experience and need for patient-centred care across China that addresses not only clinical symptoms but also emotional and social dimensions of living with IPF. Enhancing public awareness may also help reduce stigma and social isolation.