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Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases

The effects of interstitial lung disease (ILD) create a significant burden on patients, unsettling almost every domain of their lives, disrupting their physical and emotional well-being and impairing their quality of life (QoL). Because many ILDs are incurable, and there are limited reliably-effecti...

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Autores principales: Swigris, Jeffrey J., Brown, Kevin K., Abdulqawi, Rayid, Buch, Ketan, Dilling, Daniel F., Koschel, Dirk, Thavarajah, Krishna, Tomic, Rade, Inoue, Yoshikazu
Formato: Online Artículo Texto
Lenguaje:English
Publicado: European Respiratory Society 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9489034/
https://www.ncbi.nlm.nih.gov/pubmed/30578334
http://dx.doi.org/10.1183/16000617.0075-2018
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author Swigris, Jeffrey J.
Brown, Kevin K.
Abdulqawi, Rayid
Buch, Ketan
Dilling, Daniel F.
Koschel, Dirk
Thavarajah, Krishna
Tomic, Rade
Inoue, Yoshikazu
author_facet Swigris, Jeffrey J.
Brown, Kevin K.
Abdulqawi, Rayid
Buch, Ketan
Dilling, Daniel F.
Koschel, Dirk
Thavarajah, Krishna
Tomic, Rade
Inoue, Yoshikazu
author_sort Swigris, Jeffrey J.
collection PubMed
description The effects of interstitial lung disease (ILD) create a significant burden on patients, unsettling almost every domain of their lives, disrupting their physical and emotional well-being and impairing their quality of life (QoL). Because many ILDs are incurable, and there are limited reliably-effective, life-prolonging treatment options available, the focus of many therapeutic interventions has been on improving or maintaining how patients with ILD feel and function, and by extension, their QoL. Such patient-centred outcomes are best assessed by patients themselves through tools that capture their perceptions, which inherently incorporate their values and judgements. These patient-reported outcome measures (PROs) can be used to assess an array of constructs affected by a disease or the interventions implemented to treat it. Here, we review the impact of ILD that may present with a progressive-fibrosing phenotype on patients' lives and examine how PROs have been used to measure that impact and the effectiveness of therapeutic interventions.
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spelling pubmed-94890342022-11-14 Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases Swigris, Jeffrey J. Brown, Kevin K. Abdulqawi, Rayid Buch, Ketan Dilling, Daniel F. Koschel, Dirk Thavarajah, Krishna Tomic, Rade Inoue, Yoshikazu Eur Respir Rev Review The effects of interstitial lung disease (ILD) create a significant burden on patients, unsettling almost every domain of their lives, disrupting their physical and emotional well-being and impairing their quality of life (QoL). Because many ILDs are incurable, and there are limited reliably-effective, life-prolonging treatment options available, the focus of many therapeutic interventions has been on improving or maintaining how patients with ILD feel and function, and by extension, their QoL. Such patient-centred outcomes are best assessed by patients themselves through tools that capture their perceptions, which inherently incorporate their values and judgements. These patient-reported outcome measures (PROs) can be used to assess an array of constructs affected by a disease or the interventions implemented to treat it. Here, we review the impact of ILD that may present with a progressive-fibrosing phenotype on patients' lives and examine how PROs have been used to measure that impact and the effectiveness of therapeutic interventions. European Respiratory Society 2018-12-21 /pmc/articles/PMC9489034/ /pubmed/30578334 http://dx.doi.org/10.1183/16000617.0075-2018 Text en Copyright ©ERS 2018. https://creativecommons.org/licenses/by-nc/4.0/ERR articles are open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0.
spellingShingle Review
Swigris, Jeffrey J.
Brown, Kevin K.
Abdulqawi, Rayid
Buch, Ketan
Dilling, Daniel F.
Koschel, Dirk
Thavarajah, Krishna
Tomic, Rade
Inoue, Yoshikazu
Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases
title Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases
title_full Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases
title_fullStr Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases
title_full_unstemmed Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases
title_short Patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases
title_sort patients' perceptions and patient-reported outcomes in progressive-fibrosing interstitial lung diseases
topic Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9489034/
https://www.ncbi.nlm.nih.gov/pubmed/30578334
http://dx.doi.org/10.1183/16000617.0075-2018
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