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Patients’ Experiences in Transitioning to Secondary Progressive Multiple Sclerosis: Qualitative Interviews

INTRODUCTION: Critical gaps exist in the understanding of the continuum of multiple sclerosis (MS) progression, particularly with regard to the patient experience prior to and during the transition from relapsing–remitting MS (RRMS) to secondary-progressive MS (SPMS) stages. To date, there are no cl...

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Autores principales: Lewis, Sandy, Wray, Sibyl E., Evans, Emily, Romano, Carla, Bartolome, Lauren, Su, Wendy, Shah, Roshani, Russo, Patricia A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8571456/
https://www.ncbi.nlm.nih.gov/pubmed/34392498
http://dx.doi.org/10.1007/s40120-021-00265-0
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author Lewis, Sandy
Wray, Sibyl E.
Evans, Emily
Romano, Carla
Bartolome, Lauren
Su, Wendy
Shah, Roshani
Russo, Patricia A.
author_facet Lewis, Sandy
Wray, Sibyl E.
Evans, Emily
Romano, Carla
Bartolome, Lauren
Su, Wendy
Shah, Roshani
Russo, Patricia A.
author_sort Lewis, Sandy
collection PubMed
description INTRODUCTION: Critical gaps exist in the understanding of the continuum of multiple sclerosis (MS) progression, particularly with regard to the patient experience prior to and during the transition from relapsing–remitting MS (RRMS) to secondary-progressive MS (SPMS) stages. To date, there are no clear diagnostic criteria in the determination of the clinical transition. We report here the use of patient experience data to support the development of a qualitative conceptual model of MS that describes the patient journey of transition from active-relapsing disease to progressive MS. METHODS: The study used a single-encounter, multicenter, qualitative observational study design that included a targeted literature review and individual, in-depth interviews with adult patients with a clinically confirmed diagnosis of SPMS and their adult care partners. Descriptions of symptoms and impacts of RRMS and SPMS were extracted from the literature review and used to support development of the interview guide and conceptual model. RESULTS: Participants described a slow progression in terms of change in symptoms over time, including both the development of new symptoms and the worsening of existing symptoms. CONCLUSIONS: The conceptual model of the transitionary period from RRMS to SPMS expands the current understanding of the progression of MS from the patient and care partner perspectives. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40120-021-00265-0.
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spelling pubmed-85714562021-11-15 Patients’ Experiences in Transitioning to Secondary Progressive Multiple Sclerosis: Qualitative Interviews Lewis, Sandy Wray, Sibyl E. Evans, Emily Romano, Carla Bartolome, Lauren Su, Wendy Shah, Roshani Russo, Patricia A. Neurol Ther Original Research INTRODUCTION: Critical gaps exist in the understanding of the continuum of multiple sclerosis (MS) progression, particularly with regard to the patient experience prior to and during the transition from relapsing–remitting MS (RRMS) to secondary-progressive MS (SPMS) stages. To date, there are no clear diagnostic criteria in the determination of the clinical transition. We report here the use of patient experience data to support the development of a qualitative conceptual model of MS that describes the patient journey of transition from active-relapsing disease to progressive MS. METHODS: The study used a single-encounter, multicenter, qualitative observational study design that included a targeted literature review and individual, in-depth interviews with adult patients with a clinically confirmed diagnosis of SPMS and their adult care partners. Descriptions of symptoms and impacts of RRMS and SPMS were extracted from the literature review and used to support development of the interview guide and conceptual model. RESULTS: Participants described a slow progression in terms of change in symptoms over time, including both the development of new symptoms and the worsening of existing symptoms. CONCLUSIONS: The conceptual model of the transitionary period from RRMS to SPMS expands the current understanding of the progression of MS from the patient and care partner perspectives. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40120-021-00265-0. Springer Healthcare 2021-08-14 /pmc/articles/PMC8571456/ /pubmed/34392498 http://dx.doi.org/10.1007/s40120-021-00265-0 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by-nc/4.0/Open Access This 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 Original Research
Lewis, Sandy
Wray, Sibyl E.
Evans, Emily
Romano, Carla
Bartolome, Lauren
Su, Wendy
Shah, Roshani
Russo, Patricia A.
Patients’ Experiences in Transitioning to Secondary Progressive Multiple Sclerosis: Qualitative Interviews
title Patients’ Experiences in Transitioning to Secondary Progressive Multiple Sclerosis: Qualitative Interviews
title_full Patients’ Experiences in Transitioning to Secondary Progressive Multiple Sclerosis: Qualitative Interviews
title_fullStr Patients’ Experiences in Transitioning to Secondary Progressive Multiple Sclerosis: Qualitative Interviews
title_full_unstemmed Patients’ Experiences in Transitioning to Secondary Progressive Multiple Sclerosis: Qualitative Interviews
title_short Patients’ Experiences in Transitioning to Secondary Progressive Multiple Sclerosis: Qualitative Interviews
title_sort patients’ experiences in transitioning to secondary progressive multiple sclerosis: qualitative interviews
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8571456/
https://www.ncbi.nlm.nih.gov/pubmed/34392498
http://dx.doi.org/10.1007/s40120-021-00265-0
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