Brain and Spinal Cord Injury Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran; Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Tehran, Iran.
Multiple Sclerosis Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Tehran, Iran.
Clin Neurol Neurosurg. 2021 Aug;207:106789. doi: 10.1016/j.clineuro.2021.106789. Epub 2021 Jun 26.
Multiple Sclerosis (MS) and Neuro-Myelitis Optica spectrum disorder (NMOSD) are an autoimmune condition. Both of them have unexpected and acute relapses. The aim of this qualitative study was explaining the individual problems experienced of women affected by NMOSD and MS.
Sixteen NMOSD patients and eighteen MS patients completed a face to face deep semi-structured interview. Participants were recruited from the MS ward in Sina hospital. After typing the interview, the data were analyzed using conventional content analysis, as recommended by Graneheim and Lundman (2005). Data analysis is managed with MAXQDA2018 software.
In this study, a common theme for both disease groups was identified as "challenges arising from personal problems". The categories are named after each other and have many similarities, which in the NMOSD group include four categories including: "From uncertainty to the perception of threat", "Living with limitations", "Active coping until normalization" and "Facilitators of personal problems" appeared. In the group of patients with MS, five categories emerged: "perceived threat", living at a bottleneck, trying to deal with negative experiences, "facilitators of personal problems" and "problems related to physical rehabilitation".
This qualitative study showed that the individual problems of the two groups of NMOSD and MS patients are somewhat similar. Also in the present study, people with MS need longer-term rehabilitation care than people with NMOSD, which should be considered and examined, a need that was less seen in people with NMOSD. The unpredictability of relapse in NMOSD and MS can have a profound effect on the daily lives of these people. Therefore, knowing the health and life problems of patients with NMOSD/MS can help health care teams to improve the quality of patient care.
多发性硬化症（MS）和视神经脊髓炎谱系障碍（NMOSD）都是自身免疫性疾病。两者都有意外的急性发作。本定性研究的目的是解释受 NMOSD 和 MS 影响的女性个体所经历的问题。
16 名 NMOSD 患者和 18 名 MS 患者完成了面对面的深度半结构化访谈。参与者是从西奈医院的 MS 病房招募的。访谈完成后，按照 Graneheim 和 Lundman（2005）的建议，使用常规内容分析法对数据进行分析。数据分析使用 MAXQDA2018 软件进行管理。
在这项研究中，两个疾病组都确定了一个共同的主题，即“个人问题带来的挑战”。类别是按彼此命名的，并且有许多相似之处，在 NMOSD 组中包括四个类别：“从不确定性到感知威胁”、“生活受限”、“积极应对直到正常化”和“个人问题的促进者”。在 MS 组中，出现了五个类别：“感知威胁”、生活瓶颈、试图应对负面经历、“个人问题的促进者”和“与身体康复相关的问题”。
这项定性研究表明，NMOSD 和 MS 两组患者的个人问题有些相似。在本研究中，MS 患者需要比 NMOSD 患者更长时间的康复护理，这应该被考虑和检查，而 NMOSD 患者的这种需求则较少。NMOSD 和 MS 的复发不可预测，这会对这些人的日常生活产生深远影响。因此，了解 NMOSD/MS 患者的健康和生活问题可以帮助医疗保健团队提高患者护理质量。
