Background It is unclear which outcomes are essential for the care of individuals with idiopathic pulmonary fibrosis or progressive pulmonary fibrosis (IPF/PPF). We aimed to develop a core outcome set (COS) together with patients with IPF/PPF for standard care across Europe. Methods A modified three-round Delphi study in five languages involved patients, caregivers, pulmonologists, nurses and other healthcare professionals. The initial survey consisted of 56 outcomes potentially relevant for IPF/PFF care that were identified through a scoping review, a survey with healthcare professionals and patient-led focus groups with patients and caregivers. The importance of each outcome for IPF/PPF care was scored on a 9-point Likert scale. After each round, outcomes were removed if not deemed critically important by all stakeholder groups, using predefined criteria. Afterwards, a multi-stakeholder consensus workshop was held to endorse the included outcomes and discuss and vote on those without consensus. Results The three rounds involved 110, 78 and 66 participants from 14 European countries (one third being patients and caregivers). Fourteen stakeholders contributed to the consensus workshop. The final COS consists of 17 outcomes: acute exacerbation, breathlessness, complications and side effects of the treatment, cough, exercise capacity, lung function, nutritional status, physical activity, activities of daily living, being knowledgeable about the disease, capability to do activities you enjoy, coping with the disease, feelings of anxiety, life satisfaction, loss of independence, satisfaction with care and treatment adherence . Conclusions This COS is recommended for use in clinical IPF/PPF care, but will also guide future intervention research.
Breuls et al. (Mon,) studied this question.
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