Disease Burden of Neuromyelitis Optica in China: A National Patient Survey Study

OBJECTIVES: Neuromyelitis optica(NMOSD)is a rare disease that disabling central nervous system disease characterized by acute or subacute demyelinating lesions involving the optic nerve and spinal cord simultaneously or successively.This study aimed to investigate the disease characteristics, healthcare resource utilization, and health-related quality of life (HRQoL) among NMOSD patients in China.

METHODS: An online survey of patients recruited from a national NMOSD patient association was conducted from May to June 2024. Patients' demographic and clinical characteristics, healthcare resource utilization and cost, health utility measured by the EQ-5D-5L, and aspects they deemed as critical for the treatment were collected. Descriptive analyses were conducted in the total sample. Subgroup analysis stratified by the disease relapse was then conducted.

RESULTS: 331 patients (mean age 40.2±12.5 years, 89.4% female) were included. The mean time since diagnosis was 5.5±5.0 years, and the mean time since treatment was 5.8±5.5 years. Among the total sample, 81.3% of patients experienced disease relapse, and 89.4% of relapse patients experienced a deteriorated health status. 54.4% of the patients were hospitalized in the last year, and the total annual hospitalization cost was CNY 64809.7±77295. The mean utility value of patients was 0.67±0.34, which was different from the health utility value of the Chinese general population (0.940±0.138). 68.6% (n=227) of patients deemed that control of disease relapse was the most critical aspect for the treatment. Patients with disease relapse (n=198, 59.8%) had a higher period of the time since diagnosis and treatment, higher proportion of hospitalization, higher total annual cost, and a lower health utility than patients without disease relapse (n=133).

CONCLUSIONS: In China, NMOSD patients, especially for patients with disease relapse, experienced a heavy disease burden in terms of long disease period, high proportion of disease relapse, high healthcare resource utilization and cost, and severe impairment of HRQoL.