More than half (52%) of neuromyelitis optica spectrum disorders (NMOSD) relapse events incurred out-of-pocket costs to patients, found a new cross-sectional survey-based study published in the journal Multiple Sclerosis and Related Disorders. The average cost per event was $3326 to the patients. 

More than a quarter (26%) of relapse events also led to indirect costs such as childcare and housework costs averaging $1907. 

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Finally, the majority (69%) of patients reported losing income due to hospital visits. 

“Future work should identify and support subgroups with higher economic burden from NMOSD,” concluded first author Dylan R. Rice an MD/PhD candidate at the department of neurology at Harvard Medical School in Boston, Massachusetts, and colleagues.

The findings are based on the responses of 103 patients with NMOSD who were surveyed through social media about the personal economic burden of their disease. 

The average number of relapses the patients reported was 5.3 over the last 3 years before the survey.

A relapse event is defined as visits to the emergency department and the number of hospitalizations.

NMOSD is a rare and relapsing autoimmune disease that affects the central nervous system. It is characterized by the inflammation of long segments of the spinal cord and severe optic neuritis. 

Common symptoms of the disease include eye pain, vision loss, bouts of intractable vomiting and hiccups, numbness or weakness in the upper and lower limbs, balance loss, dizziness, abnormal sensations such as pins and needles, and problems with bowel and bladder control.

An NMOSD relapse occurs due to inflammation within the central nervous system. A relapse can occur days, weeks, months, or even years apart and often lead to emergency department visits and hospitalizations of the patient. 

Reference

Rice DR, Holroyd KB, Pua DK, et al. Quantifying the economic burden to patients of relapse events from neuromyelitis optica spectrum disorders: a cross-sectional survey. Mult Scler Relat Disord. Published online February 17, 2023. doi:10.1016/j.msard.2023.104580