I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options
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; 3...
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| Format: | Article |
| Language: | English |
| Published: |
Dove Medical Press
2023-08-01
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| Series: | Patient Preference and Adherence |
| Subjects: | |
| Online Access: | https://www.dovepress.com/i-prefer-study-a-questionnaire-to-explore-patient-caregiver-and-pulmon-peer-reviewed-fulltext-article-PPA |
| _version_ | 1797752550786596864 |
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| author | Hollmen M Bromilow T Smith AB Mealing S Lewis D Galvin L Jones S Pacheco L Soulard S Froidure A |
| author_facet | Hollmen M Bromilow T Smith AB Mealing S Lewis D Galvin L Jones S Pacheco L Soulard S Froidure A |
| author_sort | Hollmen M |
| collection | DOAJ |
| description | 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 |
| first_indexed | 2024-03-12T17:04:58Z |
| format | Article |
| id | doaj.art-69e37b3328c6452d875ebbe0e17cf1d1 |
| institution | Directory Open Access Journal |
| issn | 1177-889X |
| language | English |
| last_indexed | 2024-03-12T17:04:58Z |
| publishDate | 2023-08-01 |
| publisher | Dove Medical Press |
| record_format | Article |
| series | Patient Preference and Adherence |
| spelling | doaj.art-69e37b3328c6452d875ebbe0e17cf1d12023-08-06T18:59:49ZengDove Medical PressPatient Preference and Adherence1177-889X2023-08-01Volume 171621163985670I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment OptionsHollmen MBromilow TSmith ABMealing SLewis DGalvin LJones SPacheco LSoulard SFroidure AMaria 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 researchhttps://www.dovepress.com/i-prefer-study-a-questionnaire-to-explore-patient-caregiver-and-pulmon-peer-reviewed-fulltext-article-PPAonline surveyantifibroticadherencebehaviorlung diseaseoutcomes research |
| spellingShingle | Hollmen M Bromilow T Smith AB Mealing S Lewis D Galvin L Jones S Pacheco L Soulard S Froidure A I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options Patient Preference and Adherence online survey antifibrotic adherence behavior lung disease outcomes research |
| title | I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options |
| title_full | I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options |
| title_fullStr | I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options |
| title_full_unstemmed | I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options |
| title_short | I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options |
| title_sort | i prefer study a questionnaire to explore patient caregiver and pulmonologist preferences of idiopathic pulmonary fibrosis treatment options |
| topic | online survey antifibrotic adherence behavior lung disease outcomes research |
| url | https://www.dovepress.com/i-prefer-study-a-questionnaire-to-explore-patient-caregiver-and-pulmon-peer-reviewed-fulltext-article-PPA |
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