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Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes

The objectives of this study were to describe and demonstrate a new model of developing patient reported outcomes (PROs) that are patient-centered, and to test the hypothesis that following this model would result in a qualitatively different PRO than if the typical PRO development model were follow...

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Autores principales: Tractenberg, Rochelle E., Garver, Amanda, Ljungberg, Inger H., Schladen, Manon M., Groah, Suzanne L.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5336216/
https://www.ncbi.nlm.nih.gov/pubmed/28257414
http://dx.doi.org/10.1371/journal.pone.0171114
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author Tractenberg, Rochelle E.
Garver, Amanda
Ljungberg, Inger H.
Schladen, Manon M.
Groah, Suzanne L.
author_facet Tractenberg, Rochelle E.
Garver, Amanda
Ljungberg, Inger H.
Schladen, Manon M.
Groah, Suzanne L.
author_sort Tractenberg, Rochelle E.
collection PubMed
description The objectives of this study were to describe and demonstrate a new model of developing patient reported outcomes (PROs) that are patient-centered, and to test the hypothesis that following this model would result in a qualitatively different PRO than if the typical PRO development model were followed. The typical process of developing PROs begins with an initial list of signs or symptoms originating from clinicians or PRO developers; patient validation of this list ensures that the list (i.e., the new PRO) is interpretable by patients, but not that patient perspectives are central or even represented. The new model begins with elicitation from clinicians and patients independently and separately. These perspectives are formally analyzed qualitatively, and the results are iteratively integrated by researchers, supporting clinical relevance and patient centeredness. We describe the application of this new model to the development of a PRO for urinary signs and symptoms in individuals with neuropathic bladder, and test the hypothesis that the two processes generate qualitatively different instruments using a national validation sample of 300 respondents. Of its 29 items, the new instrument included 13 signs/symptoms derived from existing clinical practice guidelines, with 16 others derived from the patient/focus groups. The three most-endorsed items came from the patients, and the three least-endorsed items came from clinical guidelines. Thematic qualitative analysis of the elicitation process, as well as the results from our national sample, support the conclusion that the new model yields an instrument that is clinically interpretable, but more patient-centered, than the typical model would have done in this context.
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spelling pubmed-53362162017-03-10 Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes Tractenberg, Rochelle E. Garver, Amanda Ljungberg, Inger H. Schladen, Manon M. Groah, Suzanne L. PLoS One Research Article The objectives of this study were to describe and demonstrate a new model of developing patient reported outcomes (PROs) that are patient-centered, and to test the hypothesis that following this model would result in a qualitatively different PRO than if the typical PRO development model were followed. The typical process of developing PROs begins with an initial list of signs or symptoms originating from clinicians or PRO developers; patient validation of this list ensures that the list (i.e., the new PRO) is interpretable by patients, but not that patient perspectives are central or even represented. The new model begins with elicitation from clinicians and patients independently and separately. These perspectives are formally analyzed qualitatively, and the results are iteratively integrated by researchers, supporting clinical relevance and patient centeredness. We describe the application of this new model to the development of a PRO for urinary signs and symptoms in individuals with neuropathic bladder, and test the hypothesis that the two processes generate qualitatively different instruments using a national validation sample of 300 respondents. Of its 29 items, the new instrument included 13 signs/symptoms derived from existing clinical practice guidelines, with 16 others derived from the patient/focus groups. The three most-endorsed items came from the patients, and the three least-endorsed items came from clinical guidelines. Thematic qualitative analysis of the elicitation process, as well as the results from our national sample, support the conclusion that the new model yields an instrument that is clinically interpretable, but more patient-centered, than the typical model would have done in this context. Public Library of Science 2017-03-03 /pmc/articles/PMC5336216/ /pubmed/28257414 http://dx.doi.org/10.1371/journal.pone.0171114 Text en © 2017 Tractenberg et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Tractenberg, Rochelle E.
Garver, Amanda
Ljungberg, Inger H.
Schladen, Manon M.
Groah, Suzanne L.
Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes
title Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes
title_full Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes
title_fullStr Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes
title_full_unstemmed Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes
title_short Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes
title_sort maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5336216/
https://www.ncbi.nlm.nih.gov/pubmed/28257414
http://dx.doi.org/10.1371/journal.pone.0171114
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