Abstract
BACKGROUND: Financial toxicity (FT) and the social determinants of health (SDOH) remain underexplored in neuromyelitis optica spectrum disorder (NMOSD). OBJECTIVE: To characterize FT in NMOSD and examine sociodemographic and clinical features. METHODS: We conducted a convenience-sampled, cross-sectional, anonymous survey (08/2024-03/2025) of 124 U.S. adults. The COmprehensive Score for financial Toxicity (COST) was used to measure FT (lower COST = higher FT). RESULTS: Seventy-five percent had a COST < 25 points, consistent with FT. In multivariable analysis, a higher attack frequency was associated with a 1.20-point lower COST score (95% confidence interval [CI] -1.90, -0.50), and each one-unit increase in disability, as measured by the Patient-Determined Disease Steps, was associated with a 0.80-point lower COST (95% CI -1.40, -0.20). Non-White race was associated with a 3.50-point lower COST (95% CI -5.80, -1.20), and double-seronegative antibody status with a 2.80-point lower COST (95% CI -5.00, -0.60). Mediation analysis suggested the effects of disability and race on FT are partially attributable to income.In exploratory models with attack count as the outcome, each one-point higher COST (lower FT) was associated with a 0.043-attack decrease (95% CI -0.081, -0.005). CONCLUSIONS: Financial toxicity is highly prevalent in NMOSD and associated with key clinical and sociodemographic features. There is a need for comprehensive NMOSD care models that address financial strain.