Mateen Farrah J, Trápaga Hacker Cristina M
Harvard Medical School, Massachusetts General Hospital, Boston, MA, United States.
Front Neurol. 2023 Mar 9;14:1142640. doi: 10.3389/fneur.2023.1142640. eCollection 2023.
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 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.
视神经脊髓炎谱系障碍（NMOSD）是一种罕见的、使人致残的神经系统疾病，其特征是中枢神经系统反复发作。视神经脊髓炎女性患者居多，且对美国那些失业和就业不足的种族和族裔群体影响尤为严重。在美国，通过Zoom在线召集了三个焦点小组，每组有20名患有视神经脊髓炎谱系障碍的工作年龄成年人，以讨论视神经脊髓炎谱系障碍患者的就业话题。研究遵循了定性研究报告的综合标准（COREQ）。采用归纳法对讨论内容进行主要主题编码。出现了以下主题：（1）视神经脊髓炎谱系障碍对就业造成的障碍，包括（i）可见和不可见症状、（ii）治疗负担以及（iii）诊断时间；（2）视神经脊髓炎谱系障碍影响就业时的缓解因素；（3）2019冠状病毒病的影响；（4）对收入的影响；（5）对新的和未来就业以及高等教育机会的影响；以及（6）在重大政策或科学变革之外可实际解决的未满足需求。
