The Patient Journey in Interstitial Lung Disease: Mobility, Independence, and Psychological Burden

Background: Interstitial lung diseases (ILDs) profoundly affect daily life, limiting mobility, independence, and emotional stability. While antifibrotic therapies may slow physiological decline, the living experience-characterized by breathlessness, cough, frailty, and psychological distress-remains insufficiently understood; this study therefore aimed to capture real-world patient perspectives on functional capacity, self-management, and mental health to identify treatable traits beyond conventional physiological measures. Materials and Methods: A cross-sectional quantitative online survey was conducted between September 2024 and January 2025 by Lungenfibrose e.V. in collaboration with the Center for Interstitial and Rare Lung Diseases (ZISL), Universities of Giessen and Marburg Lung Center (Giessen site). Patients with physician-confirmed ILD completed standardized instruments assessing dyspnea (MRC), cough intensity (VAS-Cough), frailty (CFS), and health-related quality of life (EQ-5D-5L). Data were analyzed descriptively across physical, functional, and psychosocial domains. Results: The majority of 69 respondents had idiopathic pulmonary fibrosis (64.7%) with a mean diagnostic delay of 1.4 ± 2.2 years; 69% were diagnosed within two years of symptom onset, and 77% were receiving antifibrotic therapy (nintedanib 57%, pirfenidone 19%). Functional limitations were substantial-55% were mobile for fewer than two hours per day, 73% reported mobility impairment, and oxygen use was common (51% during exertion, 26% at rest). Frailty increased over time (mean CFS 3.2

• Krauss, E.
• Tello, S.
• Kuhlewey, D.
• Mahavadi, P.
• Scharmer, C.
• Behr, J.
• Guenther, A.
• Huss, G.