Patient journey and Quality of Life for Patients with Idiopathic Pulmonary Fibrosis (IPFLife) in China: a sequential exploratory mixed methods research protocol

Introduction Idiopathic pulmonary fibrosis (IPF) is a rare, chronic and progressive lung disease with a significant impact on patients’ quality of life. While much research has focused on disease mechanisms and treatment efficacy, limited attention has been paid to the landscape, unmet needs, patient experiences and quality of life. Understanding these aspects through the patient journey is essential for developing patient-centred therapeutic strategies. Therefore, this study aims to explore the status of diagnosis, treatment, the unmet needs and patient experiences of IPF in China through an analysis of the patient journey using mixed methods research. The findings in this study provide valuable insights to guide drug development, optimise clinical decision-making and support health technology assessments. Methods and analysis An exploratory sequential mixed methods design will be used in two phases. In the qualitative phase, 50 patients with IPF and 15 experienced physicians will be recruited to complete in-depth interviews. Patient journey and unmet medical needs will be the focus of data collection. Based on the findings of the qualitative study, a structured questionnaire will be developed for the subsequent quantitative study. Data will be collected from 245 patients with IPF to quantitatively analyse critical points in the patient journey, quality of life, unmet needs and treatment expectations. The integration of patient experience data into the drug/intervention development lifecycle in this mixed methods research will enhance the relevance of IPF interventions, optimising disease management strategies and improving patient health outcomes. Ethics and dissemination The study has been approved by the Peking University Third Hospital Medical Science Research Ethics Committee (2024-188-02). Prior to the study, study information will be provided, and consent will be obtained. Findings in this study will be disseminated in peer-reviewed publications and conferences. Trial registration number NCT06629623 .