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Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods

Neuromyelitis optica spectrum disorder (NMOSD) is a rare and disabling neurological disorder, marked by recurrent attacks of the central nervous system. NMO has a high female predominance and disproportionately affects racial and ethnic groups who are under- and unemployed in the USA. Three focus gr...

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Detalles Bibliográficos
Autores principales: Mateen, Farrah J., Trápaga Hacker, Cristina M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10033531/
https://www.ncbi.nlm.nih.gov/pubmed/36970509
http://dx.doi.org/10.3389/fneur.2023.1142640
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author Mateen, Farrah J.
Trápaga Hacker, Cristina M.
author_facet Mateen, Farrah J.
Trápaga Hacker, Cristina M.
author_sort Mateen, Farrah J.
collection PubMed
description Neuromyelitis optica spectrum disorder (NMOSD) is a rare and disabling neurological disorder, marked by recurrent attacks of the central nervous system. NMO has a high female predominance and disproportionately affects racial and ethnic groups who are under- and unemployed in the USA. Three focus groups, involving 20 working age adults with NMOSD in the USA, were convened via Zoom online, to discuss the topic of employment in NMOSD. Consolidated Criteria for Reporting Qualitative research (COREQ) were followed. Discussions were coded for major themes using an inductive approach. The following themes emerged: (1) Barriers due to NMOSD on employment including (i) visible and invisible symptoms, (ii) the burden of treatment, and (iii) time to diagnosis; (2) Mitigating factors when NMOSD affects employment; (3) Impact of COVID-19; (4) Impact on income; (5) Impact on new and future employment and higher education opportunities; and (6) Unmet needs that are pragmatically addressable, outside of major policy or scientific changes.
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spelling pubmed-100335312023-03-24 Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods Mateen, Farrah J. Trápaga Hacker, Cristina M. Front Neurol Neurology Neuromyelitis optica spectrum disorder (NMOSD) is a rare and disabling neurological disorder, marked by recurrent attacks of the central nervous system. NMO has a high female predominance and disproportionately affects racial and ethnic groups who are under- and unemployed in the USA. Three focus groups, involving 20 working age adults with NMOSD in the USA, were convened via Zoom online, to discuss the topic of employment in NMOSD. Consolidated Criteria for Reporting Qualitative research (COREQ) were followed. Discussions were coded for major themes using an inductive approach. The following themes emerged: (1) Barriers due to NMOSD on employment including (i) visible and invisible symptoms, (ii) the burden of treatment, and (iii) time to diagnosis; (2) Mitigating factors when NMOSD affects employment; (3) Impact of COVID-19; (4) Impact on income; (5) Impact on new and future employment and higher education opportunities; and (6) Unmet needs that are pragmatically addressable, outside of major policy or scientific changes. Frontiers Media S.A. 2023-03-09 /pmc/articles/PMC10033531/ /pubmed/36970509 http://dx.doi.org/10.3389/fneur.2023.1142640 Text en Copyright © 2023 Mateen and Trápaga Hacker. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Neurology
Mateen, Farrah J.
Trápaga Hacker, Cristina M.
Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods
title Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods
title_full Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods
title_fullStr Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods
title_full_unstemmed Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods
title_short Understanding the employment impact of neuromyelitis optica spectrum disorder in the USA: Mixed methods
title_sort understanding the employment impact of neuromyelitis optica spectrum disorder in the usa: mixed methods
topic Neurology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10033531/
https://www.ncbi.nlm.nih.gov/pubmed/36970509
http://dx.doi.org/10.3389/fneur.2023.1142640
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