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

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机构： [1]Research Center of Clinical Epidemiology, Peking University Third Hospital, Beijing, China [2]Key Laboratory of Epidemiology of Major Diseases, Peking University, Beijing, China [3]Department of Respiratory and Critical Care Medicine, Peking University Third Hospital, Beijing, China [4]School of Nursing, Zhejiang Chinese Medical University, Hangzhou, China [5]Clinical Research Institute, Shenzhen Peking University-The Hong Kong University of Science and Technology Medical Center, Shenzhen, China [6]Department of General Practice, West China Hospital of Sichuan University, Chengdu, China [7]Department of Respiratory and Critical Care Medicine, Beijing Chao-Yang Hospital Capital Medical University, Beijing, China [8]Department of Computer Science and Technology, Southern University of Science and Technology, Shenzhen, China [9]School of Nursing, Peking University, Beijing, China [10]Peking University School of Public Health, Beijing, China [11]Department of General Internal Medicine, Sichuan University West China Second University Hospital, Chengdu, China [12]Key Laboratory of Birth Defects and Related Diseases of Women and Children, Sichuan University, Chengdu, China [13]Department of Pharmacy, Peking University Third Hospital, Beijing, China [14]Peking University Cancer Hospital, Beijing, China

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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.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.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.NCT06629623.© Author(s) (or their employer(s)) 2025. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ Group.

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出版当年[2025]版：

大类 | 4 区医学

小类 | 4 区医学：内科

最新[2025]版：

大类 | 4 区医学

小类 | 4 区医学：内科

第一作者：

第一作者机构： [1]Research Center of Clinical Epidemiology, Peking University Third Hospital, Beijing, China [2]Key Laboratory of Epidemiology of Major Diseases, Peking University, Beijing, China

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通讯机构： [1]Research Center of Clinical Epidemiology, Peking University Third Hospital, Beijing, China [2]Key Laboratory of Epidemiology of Major Diseases, Peking University, Beijing, China [10]Peking University School of Public Health, Beijing, China

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