The Patient Experience of Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease Post-Diagnosis: Results from an International Survey.

INTRODUCTION: Data on the post-diagnosis experience of individuals with myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) and their caregivers are limited. We explored post-diagnosis treatment experience and satisfaction with care in individuals with MOGAD and associated caregiver burden. METHODS: An online 57-question survey was distributed internationally to adults (aged ≥ 16 years) or caregivers assisting an adult or answering on behalf of a child (aged < 16 years) from October to December 2024. RESULTS: Overall, 261 responses were collected (adults, 219; children, 42) across 27 countries. Of those prescribed a preventative treatment, 43% of adults (n = 71/167) and 42% of children (n = 13/31) stopped treatment; common reasons were side effects and lack of efficacy. Most adults (73%) and children (64%) reported difficulties accessing/trying to access MOGAD treatment and care. Substantial dissatisfaction was reported for chronic symptom management for adults (35%) and psychological/emotional support for children (31%). Compared with individuals with MOGAD (N = 261), caregivers (of adults, n = 61; of children, n = 42) were significantly more likely to report mental health impacts (26% vs 92%, respectively; p < 0.001). CONCLUSION: Persistent unmet care and support needs exist for individuals with MOGAD. Treatments were often stopped/changed, highlighting the need for more efficacious, tolerable, and approved therapies. Caregivers experience significant mental health impacts; improved support is needed.