‘Good Health’ and care needs in IPF/PPF: The COCOS-IPF Patient-led European Focus Groups

Idiopathic pulmonary fibrosis (IPF) and other progressive forms of pulmonary fibrosis (PPF) place a heavy burden on patients’ lives. While research on clinical aspects of IPF and PPF progresses, evidence on patients’ subjective experiences is still emerging. This qualitative study investigated how patients with IPF/PPF and caregivers define “good health”, key health outcomes of the care they receive, and unmet care needs. This work is part of the COCOS-IPF project, which aims to develop a Core Outcome Set for IPF and PPF. Methods Together with the European Lung Foundation and the European Pulmonary Fibrosis Federation, focus groups were conducted by trained patient representatives, supported by allied health professionals, across five European countries. Discussions followed a semi-structured topic guide. An inductive thematic analysis was performed, following Braun and Clarke's framework for extraction of qualitative data, with findings refined through consensus meetings. Results Our analyses revealed 10 major themes reflecting participants’ perspectives on health, reflecting four broader areas: social connectedness, adaptive strategies and activity, physical and emotional wellbeing, and overarching perceptions of quality of life and normality. One additional major theme summarises participants’ unfulfilled care needs, including access to clear information, holistic and person-centred care, and attention to psychological and social needs. Conclusion Patients and caregivers define good health in a multidimensional way, linking physical, emotional, and social aspects. Including these perspectives in developing the IPF/PPF Core Outcome Set could better align care with patients’ real-life needs and priorities.