Wenjuan Huang1, Jingzi ZhangBao1, Xuechun Chang1, Liang Wang1, Chongbo Zhao1, Jiahong Lu1, Min Wang2, Xiaoyan Ding3, Yafang Xu4, Lei Zhou1, Dingguo Li5, Megan K Behne6, Jacinta M Behne6, Michael R Yeaman7, Eliezer Katz8, Chuanzhen Lu9, Chao Quan10. 1. Department of Neurology, Huashan Hospital, Fudan University, Shanghai, China. 2. Department of Ophthalmology, Eye and ENT hospital, Fudan University, Shanghai, China. 3. NMO Family Shanghai (www.nmofamily.cn) affiliated to Shanghai Rare Disease Prevention Foundation, Shanghai, China. 4. Department of Nursing, Huashan Hospital, Fudan University, Shanghai, China. 5. Shanghai Rare Disease Prevention Foundation, Shanghai, China. 6. The Guthy-Jackson Charitable Foundation (GJCF), Beverly Hills, CA, USA. 7. Department of Medicine, University of California, Los Angeles, LA, USA; Divisions of Molecular Medicine and Infectious Diseases, Harbor-UCLA Medical Center; and The Lundquist Institute for Biomedical Innovation at Harbor-UCLA Medical Center, Torrance, CA, USA. 8. Viela Bio, 1 MedImmune Way, Gaithersburg, MD, USA. 9. Department of Neurology, Huashan Hospital, Fudan University, Shanghai, China. Electronic address: chuanzhenlu@163.com. 10. Department of Neurology, Huashan Hospital, Fudan University, Shanghai, China. Electronic address: chao_quan@fudan.edu.cn.
Abstract
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 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. 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). 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. 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.
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 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. 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). 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. 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.
Authors: Elisabet Lopez-Soley; Jose E Meca-Lallana; Sara Llufriu; Yolanda Blanco; Rocío Gómez-Ballesteros; Jorge Maurino; Francisco Pérez-Miralles; Lucía Forero; Carmen Calles; María L Martinez-Gines; Inés Gonzalez-Suarez; Sabas Boyero; Lucía Romero-Pinel; Ángel P Sempere; Virginia Meca-Lallana; Luis Querol; Lucienne Costa-Frossard; Maria Sepulveda; Elisabeth Solana Journal: J Pers Med Date: 2022-05-02
Authors: José E Meca-Lallana; Rocío Gómez-Ballesteros; Francisco Pérez-Miralles; Lucía Forero; María Sepúlveda; Carmen Calles; María L Martínez-Ginés; Inés González-Suárez; Sabas Boyero; Lucía Romero-Pinel; Ángel P Sempere; Virginia Meca-Lallana; Luis Querol; Lucienne Costa-Frossard; Daniel Prefasi; Jorge Maurino Journal: Neurol Ther Date: 2022-05-06