Neuromyelitis optica spectrum disorder in China: Quality of life and medical care experience

• Published in: Multiple sclerosis and related disorders 2020-11, Vol.46, p.102542-102542, Article 102542
• Main Authors: 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
• Format: Article
• Language: English
• Subjects: Aquaporin 4; Aquaporin 4 (AQP4); Child; China - epidemiology; Cross-Sectional Studies; Humans; Neuromyelitis Optica - epidemiology; Neuromyelitis Optica - therapy; Neuromyelitis optica spectrum disorder (NMOSD); Optic Neuritis; Quality of Life; Quality of life (QoL); Short Form 36 (SF-36)
• ISSN: 2211-0348; 2211-0356
• DOI: 10.1016/j.msard.2020.102542

•NMOSD negatively impacted Chinese patients’ physical and emotional health.•Visual impairment, bodily pain, and bowel and bladder disturbance decreased QoL.•The Chinese cohort exhibited low psychological resilience.•NMOSD influenced the decision to have children and impaired work ability.•Heavy financial burden and insufficient health insurance coverage diminished QoL. 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