Abstract
We surveyed 103 adults (mean age 46 years; 85% female) with neuromyelitis optica spectrum disorders (NMOSD) through social media about their personal economic burden of NMOSD emergency department visits and hospitalizations ("relapse events"). The average number of relapse events over the prior 3 years was 5.3. Participants reported direct, out-of-pocket costs for 52% of events (mean cost per event 3326 USD, 95% CI [2378,4274]) and indirect costs (e.g., childcare) for 26% (mean cost per event 1907 USD, 95% CI [1159,2655]). Sixty-nine percent reported lost income due to hospital visits. Future work should identify and support subgroups with higher economic burden from NMOSD.
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