Treatment patterns, access, and multidimensional burden of myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) in China: A nationwide cross-sectional study.

BACKGROUND: Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is a rare demyelinating disorder with evolving diagnostic and treatment landscape. Real-world evidence on treatment patterns, access, and disease burden remains limited, particularly in China. OBJECTIVES: To characterize the patient journey, treatment patterns, healthcare resource utilization (HCRU) and multidimensional disease burden of MOGAD in China. DESIGN: Nationwide, cross-sectional electronic survey. METHODS: Patients with MOGAD and their caregivers completed an electronic survey capturing diagnostic and treatment history, HCRU, and patient-reported outcomes. Data were stratified by age and treatment phases. Multivariable linear regression was used to identify determinants of health-related quality of life (HRQoL). RESULTS: The cohort (n=336) was predominantly pediatric (69.6%). Corticosteroids remained the most widely used across treatment phases. The use of steroid-sparing immunosuppressants increased during maintenance treatment and showed age-specific patterns (SMD=0.9): children used intravenous immunoglobulin more often (57.7%), whereas adults more frequently received mycophenolate mofetil (54.2%). Barriers to treatment access were reflected by distance to obtain care and profound economic burden with high out-of-pocket expenses (up to 100% of total expenditure), while 66.7% of participants reported lack of reimbursement as a major obstacle. Despite largely preserved physical function, HRQoL remained reduced (SF-6Dv2 0.66) with high productivity loss mainly driven by presenteeism. Withdrawal from education/employment was the strongest predictor of reduced HRQoL (βstd = -0.252, p<0.001), exceeding clinical and treatment-related factors. Caregiver burden was considerable, with 43% requiring leave from work/school, and their high levels of psychosocial distress were evidenced by anxiety and depression screening scores. CONCLUSIONS: Real-world management of MOGAD in China is characterized by persistent use of corticosteroids and barriers of access to steroid-sparing immunotherapies. These constraints are associated with impaired quality of life and substantial socioeconomic burden. Improving access to effective and affordable maintenance therapies and strengthening multidisciplinary support may improve long-term outcomes for patients and caregivers.