Good health’ for patients with PPF: Insights from patient-led international focus groups

<bold>Objectives:</bold> Progressive forms of pulmonary fibrosis (PPF) put a heavy burden on patients’ lives, extending beyond evident respiratory symptoms. Despite a growing body of research on clinical aspects, there is insufficient data about the subjective experience of patients with PPF. This study aimed to explore what 'good health' means for these patients and their caregivers. <bold>Methods:</bold> This study is part of the COCOS-IPF project that aims to identify a Core Outcome Set for patients with PPF in a collaborative approach. Focus group sessions were conducted involving 30 PPF patients and 6 caregivers across five European countries. Uniquely, these focus groups were conducted by trained patient representatives. Discussions revolved around a semi-structured interview guide. Data was analyzed by methods of thematic analysis. We held a consensus meeting with focus group moderators. <bold>Results:</bold> When discussing 'good health’, a variety of health outcomes was deemed significant by patients. Maintaining a sense of "normality," and preserving their quality of life was considered crucial. This involves participating in joyful activities, nurturing meaningful relationships, maintaining independence, and feeling understood and supported. The importance of effective coping strategies was highlighted. When asked about what being not in 'good health' means, physical symptoms emerged as a very prominent issue. The process of care was identified as an essential aspect. This included feeling well-informed and receiving holistic care from expert professionals. <bold>Conclusion:</bold> Our findings show the importance of understanding the personal interpretation of well-being and could influence endpoints for daily clinical care.