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Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S.

BACKGROUND: To document a generalizable process for developing a patient-prioritized chronic obstructive pulmonary disease (COPD) research agenda and to provide an overview of domains that were developed in response to people living with COPD and caregivers’ suggestions for research. METHODS: Adults...

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Autores principales: Gruß, Inga, McCreary, Gretchen M., Ivlev, Ilya, Houlihan, Mary Ellen, Yawn, Barbara P., Pasquale, Cara, Clark, William, Mularski, Richard A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8643383/
https://www.ncbi.nlm.nih.gov/pubmed/34865193
http://dx.doi.org/10.1186/s41687-021-00399-7
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author Gruß, Inga
McCreary, Gretchen M.
Ivlev, Ilya
Houlihan, Mary Ellen
Yawn, Barbara P.
Pasquale, Cara
Clark, William
Mularski, Richard A.
author_facet Gruß, Inga
McCreary, Gretchen M.
Ivlev, Ilya
Houlihan, Mary Ellen
Yawn, Barbara P.
Pasquale, Cara
Clark, William
Mularski, Richard A.
author_sort Gruß, Inga
collection PubMed
description BACKGROUND: To document a generalizable process for developing a patient-prioritized chronic obstructive pulmonary disease (COPD) research agenda and to provide an overview of domains that were developed in response to people living with COPD and caregivers’ suggestions for research. METHODS: Adults with COPD and caregivers who are members of the COPD Patient-Powered Research Network (PPRN) provided suggestions for COPD-related research through a self-administered, online survey. These responses were analyzed with a content analysis approach: domains for categorizing all survey responses were created, then all responses were categorized independently by a group of researchers, then these categorizations were adjudicated, and finally a density map was created that represented the number of responses in each of the domains. RESULTS: At the time of analysis, 6157 adults had fully completed the baseline survey. Survey responses were categorized across seven domains as follows: 22.5% of all responses fell into the domain family/social/community research, 20.8% of all responses fell into the domain well-being, 15% of all responses fell into the domain curative research, 14.6% of all responses fell into the domain biomedical therapies, 10.5% of all responses fell into the domain policy concerns, 6% of all responses fell into the domain holistic therapies and 10.7% of all responses fell into the domain ambiguous comments that could not be translated into concrete research topics. CONCLUSION: Using qualitative open-ended survey responses from the COPD PPRN registrants, we were able to identify six key domains of research about COPD that are considered most important by patients. These domains differ in content from prior scientist-led efforts to develop priorities for COPD research, demonstrating the ongoing importance of involving patients and their caregivers in determining research priorities. The results suggest the field can more closely align research efforts to patient priorities by considering the identified domains.
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spelling pubmed-86433832021-12-15 Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S. Gruß, Inga McCreary, Gretchen M. Ivlev, Ilya Houlihan, Mary Ellen Yawn, Barbara P. Pasquale, Cara Clark, William Mularski, Richard A. J Patient Rep Outcomes Research BACKGROUND: To document a generalizable process for developing a patient-prioritized chronic obstructive pulmonary disease (COPD) research agenda and to provide an overview of domains that were developed in response to people living with COPD and caregivers’ suggestions for research. METHODS: Adults with COPD and caregivers who are members of the COPD Patient-Powered Research Network (PPRN) provided suggestions for COPD-related research through a self-administered, online survey. These responses were analyzed with a content analysis approach: domains for categorizing all survey responses were created, then all responses were categorized independently by a group of researchers, then these categorizations were adjudicated, and finally a density map was created that represented the number of responses in each of the domains. RESULTS: At the time of analysis, 6157 adults had fully completed the baseline survey. Survey responses were categorized across seven domains as follows: 22.5% of all responses fell into the domain family/social/community research, 20.8% of all responses fell into the domain well-being, 15% of all responses fell into the domain curative research, 14.6% of all responses fell into the domain biomedical therapies, 10.5% of all responses fell into the domain policy concerns, 6% of all responses fell into the domain holistic therapies and 10.7% of all responses fell into the domain ambiguous comments that could not be translated into concrete research topics. CONCLUSION: Using qualitative open-ended survey responses from the COPD PPRN registrants, we were able to identify six key domains of research about COPD that are considered most important by patients. These domains differ in content from prior scientist-led efforts to develop priorities for COPD research, demonstrating the ongoing importance of involving patients and their caregivers in determining research priorities. The results suggest the field can more closely align research efforts to patient priorities by considering the identified domains. Springer International Publishing 2021-12-04 /pmc/articles/PMC8643383/ /pubmed/34865193 http://dx.doi.org/10.1186/s41687-021-00399-7 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Research
Gruß, Inga
McCreary, Gretchen M.
Ivlev, Ilya
Houlihan, Mary Ellen
Yawn, Barbara P.
Pasquale, Cara
Clark, William
Mularski, Richard A.
Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S.
title Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S.
title_full Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S.
title_fullStr Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S.
title_full_unstemmed Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S.
title_short Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S.
title_sort developing a patient-driven chronic obstructive pulmonary disease (copd) research agenda in the u.s.
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8643383/
https://www.ncbi.nlm.nih.gov/pubmed/34865193
http://dx.doi.org/10.1186/s41687-021-00399-7
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