Cargando…
I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options
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...
Autores principales: | , , , , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Dove
2023
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10408661/ https://www.ncbi.nlm.nih.gov/pubmed/37560148 http://dx.doi.org/10.2147/PPA.S408857 |
_version_ | 1785086212639293440 |
---|---|
author | Hollmen, Maria Bromilow, Tom Smith, Adam B Mealing, Stuart Lewis, Damian Galvin, Liam Jones, Steve Pacheco, Luís Soulard, Stéphane Froidure, Antoine |
author_facet | Hollmen, Maria Bromilow, Tom Smith, Adam B Mealing, Stuart Lewis, Damian Galvin, Liam Jones, Steve Pacheco, Luís Soulard, Stéphane Froidure, Antoine |
author_sort | Hollmen, Maria |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-10408661 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Dove |
record_format | MEDLINE/PubMed |
spelling | pubmed-104086612023-08-09 I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options Hollmen, Maria Bromilow, Tom Smith, Adam B Mealing, Stuart Lewis, Damian Galvin, Liam Jones, Steve Pacheco, Luís Soulard, Stéphane Froidure, Antoine Patient Prefer Adherence Original Research 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. Dove 2023-08-04 /pmc/articles/PMC10408661/ /pubmed/37560148 http://dx.doi.org/10.2147/PPA.S408857 Text en © 2023 Hollmen et al. https://creativecommons.org/licenses/by-nc/3.0/This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License (http://creativecommons.org/licenses/by-nc/3.0/ (https://creativecommons.org/licenses/by-nc/3.0/) ). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms (https://www.dovepress.com/terms.php). |
spellingShingle | Original Research Hollmen, Maria Bromilow, Tom Smith, Adam B Mealing, Stuart Lewis, Damian Galvin, Liam Jones, Steve Pacheco, Luís Soulard, Stéphane Froidure, Antoine I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options |
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 | Original Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10408661/ https://www.ncbi.nlm.nih.gov/pubmed/37560148 http://dx.doi.org/10.2147/PPA.S408857 |
work_keys_str_mv | AT hollmenmaria ipreferstudyaquestionnairetoexplorepatientcaregiverandpulmonologistpreferencesofidiopathicpulmonaryfibrosistreatmentoptions AT bromilowtom ipreferstudyaquestionnairetoexplorepatientcaregiverandpulmonologistpreferencesofidiopathicpulmonaryfibrosistreatmentoptions AT smithadamb ipreferstudyaquestionnairetoexplorepatientcaregiverandpulmonologistpreferencesofidiopathicpulmonaryfibrosistreatmentoptions AT mealingstuart ipreferstudyaquestionnairetoexplorepatientcaregiverandpulmonologistpreferencesofidiopathicpulmonaryfibrosistreatmentoptions AT lewisdamian ipreferstudyaquestionnairetoexplorepatientcaregiverandpulmonologistpreferencesofidiopathicpulmonaryfibrosistreatmentoptions AT galvinliam ipreferstudyaquestionnairetoexplorepatientcaregiverandpulmonologistpreferencesofidiopathicpulmonaryfibrosistreatmentoptions AT jonessteve ipreferstudyaquestionnairetoexplorepatientcaregiverandpulmonologistpreferencesofidiopathicpulmonaryfibrosistreatmentoptions AT pachecoluis ipreferstudyaquestionnairetoexplorepatientcaregiverandpulmonologistpreferencesofidiopathicpulmonaryfibrosistreatmentoptions AT soulardstephane ipreferstudyaquestionnairetoexplorepatientcaregiverandpulmonologistpreferencesofidiopathicpulmonaryfibrosistreatmentoptions AT froidureantoine ipreferstudyaquestionnairetoexplorepatientcaregiverandpulmonologistpreferencesofidiopathicpulmonaryfibrosistreatmentoptions |