Neuromyelitis optica spectrum disorder in China: Quality of life and medical care experience
Neuromyelitis optica spectrum disorder in China: Quality of life and medical care experience
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中国视神经脊髓炎谱系疾病：生活质量和医疗护理体验
DOI：
10.1016/j.msard.2020.102542
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发表时间：
2020-11-01
影响因子：
4
通讯作者：
Quan, Chao
中科院分区：
文献类型：
--
作者：
Huang, Wenjuan;ZhangBao, Jingzi;Quan, Chao
背景：视神经脊髓炎谱系障碍被认为是中国最常见的中枢神经系统炎性脱髓鞘疾病亚型。目的：系统评价非酒精性精神障碍对中国患者的生活质量、就医体验、家庭健康和社会生活的影响。方法：采用横断面调查的方法，对中国所在的25个省的210名以AQP4-Ig G阳性为主的非酒精性精神障碍患者进行横断面调查。实施了由古斯杰克逊慈善基金会开发的专门针对NMOSD的调查工具和多发性硬化症生活质量-54量表。结果：超过70%的受试者有NMOSD以外的初始诊断，大多数患者初始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%)。从首发症状到确诊为NMOSD的平均时间为2.4~4.9年。61%的参与者表示，NMOSD对他们的生活质量产生了很大的负面影响。NMOSD患者的身体和情绪健康均恶化(简明36身体健康评分：37.9+/-43.7，情绪健康评分：44.8+/-44.3)。视力障碍、疼痛、大便和膀胱功能障碍是总体生活质量的最大负面生理决定因素。身体健康的恶化与情绪健康的降低有关(r=0.71p<；0.001)，也与工作能力的干扰有关(r=0.41p<；0.001)。只有一小部分患者(3.3%)表现出心理弹性(身体健康较差，但情绪健康非常健康)。NMOSD显著影响了研究队列中的生育决定，特别是在年轻一代(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，只有13.9%的人接受了利妥昔单抗治疗。超过一半(55.7%)的患者表示对目前的治疗方案不满意。很大一部分(88.1%)的参与者报告说，医疗保险不足以支付所有与疾病相关的费用。对治疗的担忧和对经济负担的担忧都是导致QOL下降的原因。结论：这项调查为NMOSD对中国患者的身体、情感和社会经济影响提供了新的见解，可能提供潜在的可修改的个人或临床护理方面来改善患者的QL，并作为基线数据反映未来的标准治疗将如何改变患者的生活质量。
Background: 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.Methods: 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 GuthyJackson 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.Results: 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). Nonspecific 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.Conclusions: 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.