Health-related quality of life and its associated factors among patients with neuromyelitis optica spectrum disorder in China: a questionnaire survey analysis

BACKGROUND: To assess the health-related quality of life (HRQoL) of Chinese Neuromyelitis optica spectrum disorder (NMOSD) patients, and to explore the influencing factors. METHODS: An online survey was conducted among patients with NMOSD in China from May to June 2024. Data on socio-demographic characteristics, clinical characteristics, healthcare resource utilization, and HRQoL measured by EQ-5D-5 L were collected. Multivariable linear regression analysis was performed to identify factors associated with HRQoL. RESULTS: A total of 336 patients with NMOSD (mean age 40.4 years; 89.3% female) were included in the analysis. The EQ-5D-5 L utility value was 0.665 ± 0.335 (mean ± SD). NMOSD patients most frequently reported problems in anxiety/depression whereas self-care was least affected; the proportion reporting no problems was 14.9% and 75.9%, respectively. According to multivariable linear regression analyses, older age, a greater number of comorbidities and chronic diseases, functional impairment (disability, difficulty walking), and higher caregiving needs were independently associated with lower HRQoL, whereas higher treatment satisfaction score and higher income (≥ 5000 CNY) were associated with higher HRQoL. Relapse status was not independently associated with HRQoL after adjustment for disease duration and current functional impairment. CONCLUSIONS: Chinese NMOSD patients experience substantially decreased HRQoL. Functional impairment and caregiving dependence are the main determinants of HRQoL, highlighting the need for patient-centered management beyond relapse prevention.