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.