Patient education and self-management content in fibrotic interstitial lung disease – results of an international multiphase Delphi consensus process with patient involvement

<bold>Introduction:</bold> Standardised and validated disease-specific patient education and self-management (PESM) programs for patients with fibrotic interstitial lung disease (fILD) are currently lacking. <bold>Methods:</bold> We initially conducted interviews with fILD patients and healthcare experts (HCE) to identify meaningful content for established PESM topics in fILD. We then performed a two-round international Delphi study with HCE to rate the importance and agreement on the items per PESM topic. Consensus was reached when ≥80% of HCE agreed on an item. Finally, we interviewed fILD patients again to validate the content. <bold>Results:</bold> We interviewed 11 patients (1 woman, 10 men) with fILD and 6 fILD HCE (4 woman, 2 men) and derived 319 initial Delphi items for seven PESM topics (Understanding fILD, Keeping Fit & Strong, Breathlessness, Cough, Fatigue, Anxiety & Depression, and Oxygen Therapy). The entire Delphi process was completed by 96 of 260 invited HCE (pneumologists, nurses, physiotherapists, exercise physiologists, and psychologists) with 104 completing round 1. During round 1, 94 items were accepted and 24 items were added based on HCE comments. After round 2, 150 items in total were accepted. Finally, 11 fILD patients added their perspective on importance and completeness of items per topic. <bold>Discussion:</bold> Specific PESM content on 7 distinct topics was co-created by patients and HCE to provide a foundation for future holistic PESM programs aiming to improve self-efficacy of patients with fILD. The optimal delivery mode for PESM programs still needs to be established but should be adapted to fit the individual patient's needs.