I-PreFer Study: A Discrete Choice Experiment to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Pharmacological Treatment Options.

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). 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. 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. 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.

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© 2023 Hollmen et al.

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Stephane Soulard and Guus Asijee are employees of Boehringer Ingelheim. Steve Jones is President of EU-PFF and a patient. Liam Galvin is Chief Executive of EU-PFF and was a carer. He also reports grants from Boehringer Ingelheim, The Roche Group, Chiesi Pharmaceuticals, Vicore Pharma, Trevi Therapeutics, Bristol Meyer Squibb, CSL Behring; travel support and/or registration from European Lung Foundation and ERN-Lung, during the conduct of the study. Tom Bromilow, Stuart Mealing, Adam B Smith, and Damian Lewis of York Health Economics Consortium provided writing, editorial support, and formatting assistance, which was contracted and funded by Boehringer Ingelheim. Maria Hollmen and Antoine Froidure received payment from Boehringer Ingelheim for helping to develop and review the questionnaire and DCE and comment on the study results. Antoine Froidure discloses consultancy and speakers fees from GlaxoSmithKline, Roche and Boehringer Ingelheim, outside the submitted work. Antoine Froidure’s institution has received unrestricted research grants from Roche and Boehringer Ingelheim. Marlies Wijsenbeek discloses the following: grants or contracts received from Hoffmann-La Roche, and Boehringer Ingelheim, outside the submitted work. Consulting fees received from Roche, Boehringer Ingelheim, Galapagos, Bristol Myers Squibb, Galecto, and Respivant, outside the submitted work. Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events Boehringer Ingelheim, F. Hoffmann-La Roche, and Novartis, outside the submitted work. Support for attending meetings and/or travel received from Boehringer Ingelheim and F. Hoffmann-La Roche, outside the submitted work. Participation on a Data Safety Monitoring Board or Advisory Board for Savara and Galapagos. Leadership or fiduciary role in other board, society, committee or advocacy group; Chair of the Idiopathic Interstitial Pneumonia group of the European Respiratory Society; Member of the board of the Netherlands Respiratory Society; Member of the scientific advisory board of the European Idiopathic Pulmonary Fibrosis and related disorders federation; Chair of the educational committee of the European Reference Network for rare Lung Diseases; Advisory board of the Dutch Lung fibrosis and Sarcoidosis patient associations. She also reports grants paid to his institution from Astra Zeneca, Boehringer Ingelheim, BMS, CLS Behring, Daiichi, Hoffman la Roche, Galapagos, Galecto, Horizon Therapeutics, Kinevant, Molecure, NeRRe Therapeutics, Novartis, Puretech, Thyron, Trevi Therapeutics, and Vicore, outside the submitted work. The authors report no other conflicts of interest in this work.