Quantifying the economic burden to patients of relapse events from neuromyelitis optica spectrum disorders: A cross-sectional survey

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.

Automated summary

We surveyed 103 adults with neuromyelitis optica spectrum disorders (NMOSD) through social media and found that they faced a significant economic burden from emergency department visits and hospitalizations. The average number of relapse events over the prior 3 years was 5.3, with participants reporting direct and indirect costs for majority of the events. Additionally, a high percentage of participants reported lost income due to hospital visits. Future studies should focus on identifying and supporting subgroups with higher economic burden from NMOSD.