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A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies
INTRODUCTION: The mechanisms of action of disease-modifying therapies (DMTs) for multiple sclerosis (MS) are complex and involve an interplay of immune system components. People with MS (PwMS) may lack a clear understanding of the immunological pathways involved in MS and its treatment; effective co...
Autores principales: | , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer Healthcare
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9127487/ https://www.ncbi.nlm.nih.gov/pubmed/35608740 http://dx.doi.org/10.1007/s40120-022-00349-5 |
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author | Burtchell, Jeri Clemmons, Daisy Clemmons, Joann Sabutis, Tim Rosenberg, Adeline Graves, Jennifer Sweeney, Michael L. Kramer, John Ziehn, Marina Brown, Brandon Weiss, Jamie L. Obeidat, Ahmed Z. |
author_facet | Burtchell, Jeri Clemmons, Daisy Clemmons, Joann Sabutis, Tim Rosenberg, Adeline Graves, Jennifer Sweeney, Michael L. Kramer, John Ziehn, Marina Brown, Brandon Weiss, Jamie L. Obeidat, Ahmed Z. |
author_sort | Burtchell, Jeri |
collection | PubMed |
description | INTRODUCTION: The mechanisms of action of disease-modifying therapies (DMTs) for multiple sclerosis (MS) are complex and involve an interplay of immune system components. People with MS (PwMS) may lack a clear understanding of the immunological pathways involved in MS and its treatment; effective communication between healthcare professionals (HCPs) and PwMS is needed to facilitate shared decision-making when discussing the disease and selecting DMTs and is particularly important in the coronavirus disease 2019 (COVID-19) era. METHODS: In this patient-authored two-part review, we performed a targeted literature search to assess the need for better communication between HCPs and PwMS regarding treatment selection, and also conducted a qualitative survey of four patient and care-partner authors to obtain insights regarding their understanding of and preferences for the treatment and management of MS. RESULTS: Following a search of the Embase and MEDLINE databases using Ovid in June 2020, an analysis of 40 journal articles and conference abstracts relating to patient empowerment and decision-making in DMT selection for MS showed a preference for safety and efficacy of treatments, followed by autonomy and convenience of administration. A need for better communication between HCPs and PwMS during treatment selection to improve patient satisfaction was also identified. The open survey responses from the patient authors revealed a need for greater involvement in decision-making processes and desire for improved communication and information tools. CONCLUSIONS: This targeted literature search and phenomenological review confirms PwMS preferences for empowered decision-making in disease management and treatment selection, to optimize independence, safety, and efficacy. It also identifies an unmet need for improved communication and information tools that convey MS information in a relatable manner. Furthermore, this review seeks to address this unmet need by providing plain language figures and descriptions of MS immune mechanisms that can be used to facilitate discussions between HCPs and PwMS. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40120-022-00349-5. |
format | Online Article Text |
id | pubmed-9127487 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Springer Healthcare |
record_format | MEDLINE/PubMed |
spelling | pubmed-91274872022-05-24 A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies Burtchell, Jeri Clemmons, Daisy Clemmons, Joann Sabutis, Tim Rosenberg, Adeline Graves, Jennifer Sweeney, Michael L. Kramer, John Ziehn, Marina Brown, Brandon Weiss, Jamie L. Obeidat, Ahmed Z. Neurol Ther Review INTRODUCTION: The mechanisms of action of disease-modifying therapies (DMTs) for multiple sclerosis (MS) are complex and involve an interplay of immune system components. People with MS (PwMS) may lack a clear understanding of the immunological pathways involved in MS and its treatment; effective communication between healthcare professionals (HCPs) and PwMS is needed to facilitate shared decision-making when discussing the disease and selecting DMTs and is particularly important in the coronavirus disease 2019 (COVID-19) era. METHODS: In this patient-authored two-part review, we performed a targeted literature search to assess the need for better communication between HCPs and PwMS regarding treatment selection, and also conducted a qualitative survey of four patient and care-partner authors to obtain insights regarding their understanding of and preferences for the treatment and management of MS. RESULTS: Following a search of the Embase and MEDLINE databases using Ovid in June 2020, an analysis of 40 journal articles and conference abstracts relating to patient empowerment and decision-making in DMT selection for MS showed a preference for safety and efficacy of treatments, followed by autonomy and convenience of administration. A need for better communication between HCPs and PwMS during treatment selection to improve patient satisfaction was also identified. The open survey responses from the patient authors revealed a need for greater involvement in decision-making processes and desire for improved communication and information tools. CONCLUSIONS: This targeted literature search and phenomenological review confirms PwMS preferences for empowered decision-making in disease management and treatment selection, to optimize independence, safety, and efficacy. It also identifies an unmet need for improved communication and information tools that convey MS information in a relatable manner. Furthermore, this review seeks to address this unmet need by providing plain language figures and descriptions of MS immune mechanisms that can be used to facilitate discussions between HCPs and PwMS. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40120-022-00349-5. Springer Healthcare 2022-05-24 /pmc/articles/PMC9127487/ /pubmed/35608740 http://dx.doi.org/10.1007/s40120-022-00349-5 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by-nc/4.0/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/ (https://creativecommons.org/licenses/by-nc/4.0/) . |
spellingShingle | Review Burtchell, Jeri Clemmons, Daisy Clemmons, Joann Sabutis, Tim Rosenberg, Adeline Graves, Jennifer Sweeney, Michael L. Kramer, John Ziehn, Marina Brown, Brandon Weiss, Jamie L. Obeidat, Ahmed Z. A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies |
title | A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies |
title_full | A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies |
title_fullStr | A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies |
title_full_unstemmed | A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies |
title_short | A Targeted Literature Search and Phenomenological Review of Perspectives of People with Multiple Sclerosis and Healthcare Professionals of the Immunology of Disease-Modifying Therapies |
title_sort | targeted literature search and phenomenological review of perspectives of people with multiple sclerosis and healthcare professionals of the immunology of disease-modifying therapies |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9127487/ https://www.ncbi.nlm.nih.gov/pubmed/35608740 http://dx.doi.org/10.1007/s40120-022-00349-5 |
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