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Maria Hollmen,1 Tom Bromilow,2 Adam B Smith,2 Stuart Mealing,2 Damian Lewis,2 Liam Galvin,3 Steve Jones,3 Luís Pacheco,4 Stéphane Soulard,4 Antoine Froidure5,6 1Faculty of Medicine, University of Helsinki, Helsinki, Finland; 2York Health Economics Consortium (YHEC), York, UK; 3European Pulmonary Fibrosis & Related Disorders Federation, Overijse, Belgium; 4Boehringer Ingelheim, Amsterdam, the Netherlands; 5Service de Pneumologie, Cliniques Universitaires Saint-Luc, Brussels, Belgium; 6Institut de Recherche Expérimentale et Clinique, UCLouvain, Ottignies-Louvain-la-Neuve, BelgiumCorrespondence: Maria Hollmen, Faculty of Medicine, University of Helsinki, Helsinki, Finland, Email maria.hollmen@helsinki.fiIntroduction: Idiopathic Pulmonary Fibrosis (IPF) is a rare disease that causes shortness of breath, dry cough, and tiredness. While there is no cure for IPF, current therapeutic treatments aim to slow lung degeneration while managing side effects. There is little known about patient experience and attitude with regards to their disease and medication.Purpose: To understand the perceptions, behaviors and drivers of treatment decision-making among patients, caregivers and pulmonologists in IPF.Patients and Methods: Online surveys to patients with IPF, caregivers and pulmonologists were developed and administered in Belgium, Finland, France, Greece (pulmonologists only), the Netherlands, Ireland and the United Kingdom between November 2021 and January 2022.Results: A total of 111 patients, 22 caregivers and 140 pulmonologists participated. Half (47%) of patients rated their disease as “severe”, while pulmonologists reported that a quarter of their patients had a low Forced Vital Capacity (FVC) (below 50% of the predicted value). Between 21% and 42% of the patients do not take an IPF medication (patients’ perception) or antifibrotic (physicians’ perception). Pulmonologists reported that a total of 58% of their patients were receiving antifibrotic medication, any IPF medication, while around 53%, 55%, 35% and 73% of the patients limited their exposure (sometimes or often) to the sun due to IPF, considered taking medication against diarrhea, nausea/vomiting and heartburn, respectively. Treatment adherence was relatively high (81%), in line with the caregivers’ view and the pulmonologists’ expectations. Overall, cultural, clinical or socio-demographic factors impacted patients’ perceptions or behaviors.Conclusion: This study shows there is a significant proportion of IPF patients who remain untreated, a misalignment of disease severity between patients and their physicians and patient background impacts behavior. Overall, more in-depth patient–physician communication is needed to improve treatment experience.Keywords: online survey, antifibrotic, adherence, behavior, lung disease, outcomes research

Maria Hollmen,1 Marlies Wijsenbeek,2 Tom Bromilow,3 Adam B Smith,3 Stuart Mealing,3 Damian Lewis,3 Liam Galvin,4 Steve Jones,4 Guus Asijee,5 Stéphane Soulard,5 Antoine Froidure6,7 1Faculty of Medicine, University of Helsinki, Helsinki, Finland; 2Centre of Excellence for Interstitial Lung Diseases and Sarcoidosis, Department of Respiratory Medicine, Erasmus MC, University Medical Center, Rotterdam, the Netherlands; 3York Health Economics Consortium (YHEC), York, UK; 4European Pulmonary Fibrosis & Related Disorders Federation, Overijse, Belgium; 5Boehringer Ingelheim, Amsterdam, the Netherlands; 6Service de Pneumologie, Cliniques Universitaires Saint-Luc, Brussels, Belgium; 7Institut de Recherche Expérimentale et Clinique, UCLouvain, BelgiumCorrespondence: Maria Hollmen, Faculty of Medicine, University of Helsinki, Haartmaninkatu 8 P.O. Box 63, Helsinki, 00014, Uusimaa, Finland, Email maria.hollmen@hus.fiPurpose: Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive, and ultimately fatal lung disease that, while rare, has seen incidence rise over time. There is no cure for IPF other than a lung transplant, though two antifibrotic (AF) drugs do exist to slow disease progression. While these drugs are efficacious, they are both associated with differing profiles of adverse events. This study aimed to elicit patient, caregiver and pulmonologist preferences on the treatment profiles of AFs via a discrete choice experiment (DCE).Patients and Methods: The DCE and associated survey were distributed across 7 European countries, and bespoke DCEs were developed for patients/caregivers and pulmonologists. After collaboration with European Pulmonary Fibrosis & Related Disorders Federation (EU-PFF) and expert pulmonologists, respectively, a patient/caregiver DCE with 5 attributes and a pulmonologist DCE with 6 attributes were finalized. The DCEs had a blocked approach to reduce participant burden and were distributed on an online survey platform. Preferences were estimated through conditional multinomial logit regression analysis.Results: Ninety-five patients, 22 caregivers and 115 pulmonologists fully completed their respective DCEs. Overall, patients and caregivers preferred management of treatment-related adverse events over both survival benefits and disease progression. Nearly all preference levels were found to be significantly different from their reference level. In contrast, pulmonologists showed a greater preference for control of lung function and exacerbations over adverse events. Although there were relative differences between the univariate subgroups in terms of the preference weights, most of these were not statistically significant.Conclusion: The outcomes from this study suggest that while patients and caregivers had similar preferences for characteristics of IPF treatments, pulmonologists did not share those same preferences. Patients and caregivers preferred safety, while pulmonologists preferred efficacy. These differences should be considered by clinicians to better involve the patient in treatment decision-making for IPF.Keywords: treatment preferences, online survey, outcomes research, lung disease