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Stakeholder-Engaged Derivation of Patient-Informed Value Elements

OBJECTIVES: Our objective was to identify patient-informed value elements that can be used to make value assessment more patient centered. METHODS: Mixed methods were used iteratively to collect and integrate qualitative and quantitative data in a four-stage process: identification (stage 1), priori...

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Autores principales: dosReis, Susan, Butler, Beverly, Caicedo, Juan, Kennedy, Annie, Hong, Yoon Duk, Zhang, Chengchen, Slejko, Julia F.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7479003/
https://www.ncbi.nlm.nih.gov/pubmed/32676998
http://dx.doi.org/10.1007/s40271-020-00433-8
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author dosReis, Susan
Butler, Beverly
Caicedo, Juan
Kennedy, Annie
Hong, Yoon Duk
Zhang, Chengchen
Slejko, Julia F.
author_facet dosReis, Susan
Butler, Beverly
Caicedo, Juan
Kennedy, Annie
Hong, Yoon Duk
Zhang, Chengchen
Slejko, Julia F.
author_sort dosReis, Susan
collection PubMed
description OBJECTIVES: Our objective was to identify patient-informed value elements that can be used to make value assessment more patient centered. METHODS: Mixed methods were used iteratively to collect and integrate qualitative and quantitative data in a four-stage process: identification (stage 1), prioritization (stage 2), refinement (stage 3), and synthesis (stage 4). Qualitative methods involved one-on-one discussions with 14 patient stakeholders from diverse medical communities representing mental health, osteoporosis, blindness, lupus, eczema, oncology, chronic obstructive pulmonary disease, and hypercholesterolemia. Stakeholders completed guided activities to prioritize elements important to patient healthcare decision making. Responses were summarized descriptively as frequencies and proportions. RESULTS: Stakeholders identified 94 value elements in stage 1. Of these, 42 elements remained following the stage 2 prioritization and the stage 3 refinement. During the stage 4 synthesis, the 42 patient-informed value elements comprised the principal set of value elements that were organized by 11 categories: tolerability, disease burden, forecasting, accessibility of care/treatment, healthcare service delivery, cost incurred on the patient, cost incurred on the family, personal well-being, stigma, social well-being, and personal values. The categories fell under five domains: short- and long-term effects of treatment, treatment access, cost, life impact, and social impact. CONCLUSIONS: In total, 75% of the value elements in the conceptual model were patient derived and distinct from the elements used in existing value frameworks. Recommendations for tailoring, quantifying, and applying the patient-informed value elements in distinct patient communities are provided. This provides a foundation from which future research may test patient-informed value elements in existing value frameworks and economic evaluations. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s40271-020-00433-8) contains supplementary material, which is available to authorized users.
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spelling pubmed-74790032020-09-21 Stakeholder-Engaged Derivation of Patient-Informed Value Elements dosReis, Susan Butler, Beverly Caicedo, Juan Kennedy, Annie Hong, Yoon Duk Zhang, Chengchen Slejko, Julia F. Patient Original Research Article OBJECTIVES: Our objective was to identify patient-informed value elements that can be used to make value assessment more patient centered. METHODS: Mixed methods were used iteratively to collect and integrate qualitative and quantitative data in a four-stage process: identification (stage 1), prioritization (stage 2), refinement (stage 3), and synthesis (stage 4). Qualitative methods involved one-on-one discussions with 14 patient stakeholders from diverse medical communities representing mental health, osteoporosis, blindness, lupus, eczema, oncology, chronic obstructive pulmonary disease, and hypercholesterolemia. Stakeholders completed guided activities to prioritize elements important to patient healthcare decision making. Responses were summarized descriptively as frequencies and proportions. RESULTS: Stakeholders identified 94 value elements in stage 1. Of these, 42 elements remained following the stage 2 prioritization and the stage 3 refinement. During the stage 4 synthesis, the 42 patient-informed value elements comprised the principal set of value elements that were organized by 11 categories: tolerability, disease burden, forecasting, accessibility of care/treatment, healthcare service delivery, cost incurred on the patient, cost incurred on the family, personal well-being, stigma, social well-being, and personal values. The categories fell under five domains: short- and long-term effects of treatment, treatment access, cost, life impact, and social impact. CONCLUSIONS: In total, 75% of the value elements in the conceptual model were patient derived and distinct from the elements used in existing value frameworks. Recommendations for tailoring, quantifying, and applying the patient-informed value elements in distinct patient communities are provided. This provides a foundation from which future research may test patient-informed value elements in existing value frameworks and economic evaluations. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s40271-020-00433-8) contains supplementary material, which is available to authorized users. Springer International Publishing 2020-07-17 2020 /pmc/articles/PMC7479003/ /pubmed/32676998 http://dx.doi.org/10.1007/s40271-020-00433-8 Text en © The Author(s) 2020 Open AccessThis article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial 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-nc/4.0/.
spellingShingle Original Research Article
dosReis, Susan
Butler, Beverly
Caicedo, Juan
Kennedy, Annie
Hong, Yoon Duk
Zhang, Chengchen
Slejko, Julia F.
Stakeholder-Engaged Derivation of Patient-Informed Value Elements
title Stakeholder-Engaged Derivation of Patient-Informed Value Elements
title_full Stakeholder-Engaged Derivation of Patient-Informed Value Elements
title_fullStr Stakeholder-Engaged Derivation of Patient-Informed Value Elements
title_full_unstemmed Stakeholder-Engaged Derivation of Patient-Informed Value Elements
title_short Stakeholder-Engaged Derivation of Patient-Informed Value Elements
title_sort stakeholder-engaged derivation of patient-informed value elements
topic Original Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7479003/
https://www.ncbi.nlm.nih.gov/pubmed/32676998
http://dx.doi.org/10.1007/s40271-020-00433-8
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