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

Abstract

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. 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. 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). 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. Only a few studies have described what life is like for people with myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) and their caregivers. This study looked at how people with MOGAD were impacted by their disease, their experiences with treatments, and how satisfied they were with the care they had received. It also looked at how caregivers of people with MOGAD were affected. We sent a 57-question survey to adults with MOGAD (who were aged 16 years and older), caregivers of adults with MOGAD, and caregivers of children with MOGAD (who were aged under 16 years). In total, 261 people from 27 countries completed the survey, including 219 adults and 42 caregivers answering for children. We found that many people with MOGAD stop their long-term (preventative) treatment, often because of side effects or the treatment not working well. The majority of people said that it was difficult to access the treatment and care they needed for MOGAD. Around a third of people who were receiving financial support for MOGAD were also dissatisfied with this support. Adults were often dissatisfied with how their symptoms were managed, and the psychological/emotional support available for children was often said to be dissatisfying. We also compared the mental health impact of MOGAD between people who had the disease and people who cared for them and found that caregivers are more likely to report mental health challenges. Overall, there are still big gaps in treatment and support, and better therapies and caregiver support are urgently needed.