The COCOS-IPF Core Outcome Set for progressive pulmonary fibrosis
Bildiriler > Özet Bildiri · 2025
Yazarlar: Zehra Nur TÖREYİN, Ömer Faruk DADAŞ, Nesrin MOĞULKOÇ BISHOP
Idiopathic interstitial pneumonias, Hollanda, Amsterdam, Uluslararası, Poster, Özet Bildiri, 2025-2025, cilt 66, ss OA1256-OA1256
DOI: 10.1183/13993003.congress-2025.oa1256
Özet
Background: It is unclear which outcomes are essential for the care of individuals with idiopathic pulmonary fibrosis and progressive pulmonary fibrosis (IPF/PPF). Therefore, we aimed to develop a core outcome set (COS) with and for patients with IPF/PPF for routine clinical care. Methods: A modified three-round Delphi study in 5 languages involved 5 stakeholder groups (patients, caregivers, pulmonologists, nurses and other healthcare professionals) and consisted of 56 outcomes related to IPF/PFF care. These were previously collected from a scoping review, survey with healthcare professionals and patient-led focus groups with patients and caregivers. Outcomes were scored for importance to address them in routine IPF/PPF care (1 not important – 9 extremely important). After each round, outcomes were excluded based on predefined criteria (fig). After round 3, a consensus workshop with stakeholders was held to endorse the included outcomes and discuss and vote on those without consensus. Results: One hundred ten, 78 and 66 participants from 14 European countries participated in the 3 rounds. One third of the participants in each round were patients and caregivers. After round 3 and the consensus workshop, the final COS consisted of 17 outcomes (fig). Conclusions: This COS, developed with and for patients, is recommended to be used in clinical IPF/PPF care. In the last step of the COCOS-IPF project, we will determine the measurement methods for this COS. erj;66/suppl_69/OA1256/F1 F1 F1