Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review.

<bold>Introduction:</bold> People with Progressive Pulmonary Fibrosis (PPF), under which Idiopathic Pulmonary Fibrosis (IPF), have a high symptom burden and a poor health-related quality of life (HRQOL). Gaps persist despite efforts to address specialized treatment and holistic needs. <bold>Aim:</bold> As a first step towards developing a Core Outcome Set (COS) for use in IPF/PPF clinical care, we aimed to identify outcome domains investigated in quantitative and qualitative IPF/PPF research. <bold>Methods:</bold> Conducted within the COCOS-IPF Project, this scoping review follows JBI methodology and PRISMA guidelines, searching PubMed, Embase, and Web of Science. We extracted the papers’ outcomes verbatim and classified them using the COMET Taxonomy. Then, the group of outcomes or concepts with similar meanings were inductively structured by the research team into outcome domains. <bold>Results:</bold> This review included 428 papers, extracting 1,685 outcomes. Most outcomes (n=1,340) were identified in quantitative sources, through which we identified 64 outcome domains mainly referring to ‘all-cause survival’ (n=237), ‘lung function’ (n=164), ‘exercise capacity’ (n=99), ‘side effects/ complications’ (n=93) and ‘HRQOL’ (n=85). Qualitative sources (n=345) brought up 51 outcome domains with ‘capability to do activities you enjoy’ (n=31), ‘anxiety, worry and fear’ (n=26), ‘dealing with disease progression’ (n=25), ‘coping with the disease’ (n=24) and ‘being knowledgeable about the disease and treatment’ (n=24) being the most frequent ones. <bold>Conclusion:</bold> The identified outcomes, spanning diverse domains and methodologies, highlight the complexity of patient experiences and can form the basis to develop a COS for PPF.