Huang Wenjuan, ZhangBao Jingzi, Chang Xuechun, Wang Liang, Zhao Chongbo, Lu Jiahong, Wang Min, Ding Xiaoyan, Xu Yafang, Zhou Lei, Li Dingguo, Behne Megan K, Behne Jacinta M, Yeaman Michael R, Katz Eliezer, Lu Chuanzhen, Quan Chao
Department of Neurology, Huashan Hospital, Fudan University, Shanghai, China.
Department of Ophthalmology, Eye and ENT hospital, Fudan University, Shanghai, China.
Mult Scler Relat Disord. 2020 Nov;46:102542. doi: 10.1016/j.msard.2020.102542. Epub 2020 Sep 29.
Neuromyelitis optica spectrum disorder (NMOSD) is considered to be the most common subset of CNS inflammatory demyelinating diseases in China. We aimed to systematically evaluate the impact of NMOSD on Chinese patients' quality of life (QoL), medical care experience, family wellness and social life.
A cross-sectional survey was performed involving 210 mostly AQP4-IgG-positive NMOSD patients from 25 provinces across China. An established survey instrument specific for NMOSD developed by The Guthy-Jackson Charitable Foundation and the Multiple Sclerosis Quality of Life-54 scale were implemented. Pearson or Spearman Correlation analysis was performed to define the significant determinants of QoL.
More than 70% of the participants carried an initial diagnosis other than NMOSD, most of the patients were initially diagnosed with idiopathic optic neuritis (43.6%), multiple sclerosis (19.5%), gastrointestinal disorders (11.0%) and depression (10.0%). The average time elapsed between the first symptoms and accurate NMOSD diagnosis was 2.4 ± 4.9 years. Sixty-one percent of the participants reported NMOSD imposing a great negative impact on their life quality. NMOSD worsened both physical and emotional health (Short Form-36 physical health score: 37.9 ± 43.7, emotional health score: 44.8 ± 44.3). Visual impairment, pain, and bowel and bladder dysfunction were the greatest negative physical determinants of overall QoL. Worsened physical health was associated with diminished emotional health (r = 0.71, p < 0.001), and also with an interference in the ability to work (r = 0.41, p < 0.001). Only a small portion (3.3%) of the patients exhibited psychological resilience (with poor physical health but very robust emotional health). NMOSD significantly influenced the decision to have children in the study cohort, especially in the younger generation (r = -0.476, p < 0.001). Non-specific oral immunosuppressants were the most common preventive treatments, and only 13.9% received rituximab treatment. More than half (55.7%) of the patients reported dissatisfaction with current treatment options. A large proportion (88.1%) of the participants reported health insurance insufficient to pay all disease-related costs. Both concerns about treatment and about financial burden contributed to diminished QoL.
This investigation yields novel insights into the physical, emotional, and socioeconomic impact of NMOSD on Chinese patients, which may afford potentially modifiable aspects of personal or clinical care to improve the patients' QoL, as well as serve as baseline data to reflect how future standard treatments will change patients' life quality.
视神经脊髓炎谱系障碍（NMOSD）被认为是中国中枢神经系统炎性脱髓鞘疾病中最常见的亚型。我们旨在系统评估NMOSD对中国患者生活质量（QoL）、就医体验、家庭健康和社会生活的影响。
进行了一项横断面调查，涉及来自中国25个省份的210例主要为水通道蛋白4-IgG阳性的NMOSD患者。采用了由古西-杰克逊慈善基金会开发的专门针对NMOSD的既定调查问卷以及多发性硬化症生活质量-54量表。进行Pearson或Spearman相关性分析以确定生活质量的重要决定因素。
超过70%的参与者最初诊断并非NMOSD，大多数患者最初被诊断为特发性视神经炎（43.6%）、多发性硬化症（19.5%）、胃肠道疾病（11.0%）和抑郁症（10.0%）。从首次出现症状到准确诊断为NMOSD的平均时间为2.4±4.9年。61%的参与者报告NMOSD对他们的生活质量产生了极大的负面影响。NMOSD使身体和情绪健康均恶化（简明健康调查量表身体健 康得分：37.9±43.7，情绪健康得分：44.8±44.3）。视力障碍、疼痛以及肠道和膀胱功能障碍是总体生活质量最大的负面身体决定因素。身体健康恶化与情绪健康下降相关（r = 0.71，p < 0.001），也与工作能力受到干扰相关（r = 0.41，p < 0.001）。只有一小部分患者（3.3%）表现出心理韧性（身体健康不佳但情绪健康非常强健）。NMOSD对研究队列中生育决定有显著影响，尤其是在年轻一代中（r = -0.476，p < 0.001）。非特异性口服免疫抑制剂是最常见的预防性治疗方法，只有13.9%的患者接受了利妥昔单抗治疗。超过一半（55.7%）的患者报告对当前的治疗方案不满意。很大一部分参与者（88.1%）报告医疗保险不足以支付所有与疾病相关的费用。对治疗和经济负担的担忧均导致生活质量下降。
本研究对NMOSD对中国患者的身体、情绪和社会经济影响提供了新的见解，这可能为改善患者生活质量提供个人或临床护理中潜在可改变的方面，也可作为反映未来标准治疗将如何改变患者生活质量的基线数据。
