Abstract / Summary
Background Acute exacerbation of interstitial lung disease (AE-ILD) is a life-threatening condition with mortality reaching 50%, yet patient-reported outcomes (PROs) remain poorly characterized. While PRO assessment is established in stable ILD and mandated in core outcome sets for other acute respiratory conditions, systematic understanding of PRO use in AE-ILD is lacking. Methods We conducted a scoping review following PRISMA-ScR guidelines. MEDLINE, Embase, CENTRAL, and trial registries were searched through August 2025. Studies employing PROs in hospitalized adult AE-ILD patients were included. Two reviewers independently screened studies and extracted data on PRO instruments, domains assessed, assessment timing, and patient populations (OSF registration: https://osf.io/mpwjn ). Results Twenty studies were included: 7 in the primary synthesis and 13 in a supplementary analysis because direct patient reporting could not be confirmed. Eight distinct measures were identified in the primary synthesis. Dyspnoea was assessed in 5 studies and health-related quality of life in 4, while no studies used dedicated instruments for systemic or psychological symptoms. All 7 primary studies assessed PROs at admission or baseline, and 5 used them as treatment outcomes. Conclusion PRO assessment in AE-ILD remains limited by a narrow focus on dyspnoea, predominant baseline assessment, and the use of instruments whose validity in acute setting has not been established. Future research requires longitudinal, multidimensional PRO assessment with instruments validated for acute inpatient contexts to achieve patient-centred evidence in AE-ILD.