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 (β std = -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.