Jia Zhen, Dong XiuYu, Song Shuang, Guo Ruoyi, Zhang Lu, Liu Jia, Li Bin
Department of Neurology, The Second Hospital of Hebei Medical University, Shijiazhuang, China.
Neurological Laboratory of Hebei, Shijiazhuang, China.
Front Neurol. 2021 Sep 8;12:737564. doi: 10.3389/fneur.2021.737564. eCollection 2021.
This study aimed to assess the physical, emotional, medical, and socioeconomic conditions of patients with neuromyelitis optica spectrum disorder (NMOSD) in North China. A cross-sectional survey of patients with NMOSD was performed, based on an established questionnaire from the Multiple Sclerosis Patient Survival Report 2018. Logistic regression analysis was conducted to define the significant determinants of certain physical or emotional characteristics of patients. A total of 123 patients were included. A total of 63.4% of participants were initially diagnosed with conditions other than NMOSD, with a median delay of 6 months for accurate diagnosis. An aggregate of 72.2% of patients had one or more relapses, corresponding to an annual relapse rate of 0.8. Paresthesia was the most frequent physical symptom among patients both at disease onset (53.7%) and throughout the duration of the disease (86.2%). Onset in elderly (>50 years) patients was associated with an annual Expanded Disability Status Scale increase ≥1, compared with onset in younger (<30 years) patients ( = 0.001, OR = 7.83). A total of 76.4% of patients had received attack-prevention treatments in the remission phase, and 31.7 and 10.6% of patients had ever been administered rituximab and traditional Chinese medicine, respectively. Additionally, 63.4 and 43.1% of patients reported participating in few or no social activities and being out of work because of the disease. To be noted, 76.4% of patients reported suffering from negative emotions, with the most frequent being worry (60.2%), with 20.3% of patients experiencing suicidal thoughts. The inability to work and participating in few or no social activities due to NMOSD were two determinants of experiencing negative emotions ( = 0.03, OR = 3.34; = 0.02, OR = 3.19). This study reported patient perspectives on NMOSD in North China, whereby demonstrating that the inability to work and participating in few or no social activities due to NMOSD rather than the physical impairment caused by the disease, was directly associated with patients experiencing negative emotions. This insight offers potential ways to manage patients' negative emotions by enhancing family and social support and facilitating active employment.
本研究旨在评估中国北方视神经脊髓炎谱系障碍（NMOSD）患者的身体、情绪、医疗及社会经济状况。基于《2018年多发性硬化患者生存报告》中的既定问卷，对NMOSD患者进行了横断面调查。进行逻辑回归分析以确定患者某些身体或情绪特征的显著决定因素。共纳入123例患者。63.4%的参与者最初被诊断为非NMOSD疾病，准确诊断的中位延迟时间为6个月。72.2%的患者有一次或多次复发，年复发率为0.8。感觉异常是疾病发作时（53.7%）和整个病程中（86.2%）患者最常见的身体症状。老年（>50岁）患者发病时每年扩展残疾状态量表增加≥1，而年轻（<30岁）患者发病时则不然（P = 0.001，OR = 7.83）。76.4%的患者在缓解期接受了预防发作治疗，31.7%和10.6%的患者分别接受过利妥昔单抗和中药治疗。此外，63.4%和43.1%的患者报告很少或没有参加社交活动，并且因疾病而失业。值得注意的是，76.4%的患者报告有负面情绪，最常见的是担忧（60.2%），20.3%的患者有自杀念头。因NMOSD无法工作以及很少或没有参加社交活动是产生负面情绪的两个决定因素（P = 0.03，OR = 3.34；P = 0.02，OR = 3.19）。本研究报告了中国北方患者对NMOSD的看法，表明因NMOSD无法工作以及很少或没有参加社交活动，而非疾病导致的身体损伤，与患者产生负面情绪直接相关。这一见解为通过加强家庭和社会支持以及促进积极就业来管理患者的负面情绪提供了潜在途径。
