ArticleEuropean respiratory review : an official journal of the European Respiratory Society2025
Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review.
Article in European respiratory review : an official journal of the European Respiratory Society, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.
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The trial behind it
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Who cites it
6 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Outcomes of pulmonary rehabilitation in older adults with chronic obstructive pulmonary disease: a systematic review.BMC geriatrics · 2026Pooled it
- mExperimental and therapeutic medicine · 2026Review
- "Good health" and care needs in idiopathic pulmonary fibrosis/progressive pulmonary fibrosis: the COCOS-IPF patient-led European focus groups.ERJ open research · 2026Article
- Diagnostic accuracy of ultrashort echo times-MRI in patients with and without idiopathic pulmonary fibrosis.European radiology · 2026Article
- The COCOS-IPF core outcome set for idiopathic pulmonary fibrosis/progressive pulmonary fibrosis care: a mixed-method multi-perspective approach.ERJ open research · 2026Article
- Understanding emotional and practical challenges of initiating oxygen therapy in pulmonary fibrosis: insights from a patient-centered survey.BMC pulmonary medicine · 2026Article
Corrections and comments
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Authors and funding
15 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionPeople with idiopathic pulmonary fibrosis (IPF) and other forms of progressive pulmonary fibrosis (PPF) have a high symptom burden and a poor health-related quality of life (HRQoL). Despite efforts to offer specialised treatment, clinical care for these patients remains suboptimal and several nonmedical needs remain unaddressed. Developing a core outcome set (COS) can help to identify a minimum set of agreed-upon outcomes that should be measured and acted-upon in clinical care.
aimAs a first step towards developing a COS for IPF/PPF, we aimed to identify outcome domains investigated in IPF/PPF research.
methodsConducted within the COCOS-IPF (Co-designing a Core Outcome Set for and with patients with IPF) project, this scoping review follows Joanna Briggs Institute methodology and PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) guidelines to search PubMed, Embase and Web of Science for quantitative, qualitative and mixed-methods papers. We extracted each paper's outcomes verbatim and classified them using the COMET (Core Outcome Measures in Effectiveness Trials) taxonomy. Then, the research team structured outcomes or concepts with similar meanings inductively into outcome domains.
resultsWe included 428 papers, extracting 1685 outcomes. Most outcomes (n=1340) were identified in quantitative sources, which we could classify in 64 outcome domains, with the main domains being "all-cause survival" (n=237), "lung function" (n=164) and "exercise capacity" (n=99). Qualitative sources identified 51 outcome domains, with the most frequent being "capability to do activities you enjoy" (n=31), "anxiety, worry and fear" (n=26) and "dealing with disease progression" (n=25).
conclusionsThe identified outcomes, spanning diverse domains, highlight the complexity of patient experiences and can form the basis to develop a COS for IPF/PPF clinical care, as well as future research.
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