I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options

Abstract

Introduction 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.

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

“…The breakdown of those currently taking an IPF medicine was 54% taking nintedanib, 42% taking pirfenidone and 4% taking another IPF medicine. Further details of the demographic data for the patients are reported in Hollmen et al 12 …”

“…Most caregivers provided three or more hours of care every week. Further details of the demographic data for the caregivers are reported in Hollmen et al 12 …”

“…In this manuscript, we describe the development of the DCEs and their results after international administration. The results from the questionnaire portion of the surveys can be found in Hollmen et al 12 The DCEs were developed in English and translated using a medical translation firm (TransPerfect Translations). The organization running the study, York Health Economics Consortium, is wholly owned by the University of York and seeks ethical approval for studies involving human subjects from the University.…”

“…The breakdown of those currently taking an IPF medicine was 54% taking nintedanib, 42% taking pirfenidone and 4% taking another IPF medicine. Further details of the demographic data for the patients are reported in Hollmen et al 12 There were 22 caregivers recruited to the study, of whom most were from Finland, France and the UK. The majority of caregivers were women aged between 51 and 70 years, living with the patient (82%) (their partner/spouse, 91%).…”

“…Most caregivers provided three or more hours of care every week. Further details of the demographic data for the caregivers are reported in Hollmen et al 12 There were 140 pulmonologists recruited into the study, of whom 115 (82%) completed the entire survey. The largest number of HCPs was recruited from the UK (51%).…”