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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...
Autores principales: | , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Frontiers Media S.A.
2023
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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. |
format | Online Article Text |
id | pubmed-10033531 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Frontiers Media S.A. |
record_format | MEDLINE/PubMed |
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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