Abstract Rationale Although advances have been made in treating IPF, patients and their caregivers experience substantial physical and emotional burdens from IPF. Additionally, many patients with IPF face delayed diagnosis, which contributes to poor clinical outcomes. We aimed to describe the patient journey to diagnosis of IPF, and the burdens imposed by IPF on patients and their caregivers. Methods Data were drawn from the Adelphi Real World IPF/PPF-ILD Disease Specific Programme™, a cross-sectional survey of physicians in Europe (France, Germany, Italy, Spain, the United Kingdom), Japan, and the US from February to October 2024. Physicians provided demographic, caregiver needs and diagnostic data for patients with a physician-confirmed diagnosis of IPF. Patients self-reported EQ-5D-VAS (score of 0 to 100; 100 represents best health) and employment status. Analyses were descriptive. Results Overall, 236 physicians reported data on 519 patients with IPF, of whom, 156 self-reported data. Mean (SD) patient age was 68.5 (10.3) years; 77.8% were male, and 6.5% were current smokers. Cardiovascular comorbidities were reported for 36.6% of patients and neurological/psychological comorbidities for 27.2%, among whom, anxiety and depression were most common. Prior to IPF diagnosis (n = 446), 86.3% of patients were symptomatic - most patients experienced exertional dyspnea (78.2%) or cough (62.6%) - and 46.2% of patients received alternative diagnoses predating IPF, often COPD or GERD. Among patients with diagnostic journey data (n = 268), mean (SD) age at symptom onset was 65.5 (10.4) years. Mean (SD) time to IPF diagnosis was 10.7 (12.5) months, which ranged from 8.9 (15.0) months in Germany to 15.4 (13.8) months in Spain. At diagnosis, mean (SD) percent predicted forced vital capacity (n = 326) and diffusing capacity for carbon monoxide (n = 303) was 71.8% (15.7%) and 61.6% (17.3%), respectively. At diagnosis, 64.2% of patients had physician-perceived moderate to severe disease. At survey date, 38.0% of patients required caregiver support; often with housecleaning or home maintenance (60.9%), and shopping or meal preparation (51.3%). Patients reported a mean (SD) EQ-5D-VAS score of 62.4 (16.5), and 30.8% of patients reported IPF forced changes to their work lives. Conclusion Diagnostic delays and high burden of illness were noted among patients with IPF, with over a third requiring caregiver support.?Recognizing and evaluating symptoms and considering diagnoses less common than COPD among patients presenting with exertional dyspnea or cough -- like IPF -- is crucial to the early identification of IPF, the timely initiation of disease-modifying interventions, and ultimately the improvement in patient outcomes. This abstract is funded by: None
M Small (Fri,) studied this question.