Abstract
BACKGROUND: Neuromyelitis Optica Spectrum Disorder (NMOSD), a rare antoimmune condition, is characterized by a high relapse rate, necessitating long-term maintenance therapy even during clinically stable periods. This prolonged treatment regimen imposes a significant financial burden on patients, which may be greater than that associated with many other chronic diseases. However, data on the impact of financial toxicity (FT) specifically in NMOSD populations remain limited. This study aims to identify factors influencing FT in NMOSD patients using the ABC-X model as a conceptual framework. METHODS: A mixed-methods study was conducted in two phases. In the quantitative phase, 210 NMOSD patients were evaluated using four validated scales: (1) Comprehensive Score for FT based on the Patient-Reported Outcomes Measurement Information System (COST-PROM), (2) Fear of Progression Questionnaire-Short form (FoP-Q-SF), (3) Social Support Rating Scale (SSRS), and (4) general self-efficacy scale (GSES). Multivariate linear regression analysis was performed to identify the predictors of FT. In the qualitative phase, 15 NMOSD patients were recruited via purposive sampling and interviewed using a semi-structured format. Interview data were analyzed according to Colaizzi's seven-step phenomenological method. RESULTS: Quantitative findings indicated that fear of disease progression and lower self-efficacy were significantly associated with higher levels of FT (p < 0.05). Qualitative analysis revealed four thematic categories characterizing the FT experience: (1) direct economic burden stemming from core illness-related stressors, (2) insufficient or suboptimal utilization of available resources, (3) biased appraisal of stressors and maladaptive coping strategies, and (4) emergence of a multidimensional familial crisis state. The convergent results from both methodological approaches reinforced the study conclusions while enriching the overall understanding of FT in the population. CONCLUSION: This study demonstrates substantial FT among NMOSD patients, influenced by clinical, psychological, and social factors. These findings highlight the importance of integrating FT assessment into routine clinical care. In the Chinese healthcare context, challenges including delayed diagnosis, restricted access to medication, and high costs contribute significantly to this burden. Policy-level interventions should focus on improving disease awareness, expanding treatment accessibility, and reducing financial strain on affected individuals and families.