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Financial Toxicity in Neuromyelitis Optica Spectrum Disorder: An ABC-X Mixed-Methods Study.

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Financial toxicity significantly impacts Neuromyelitis Optica Spectrum Disorder (NMOSD) patients, driven by fear of progression and low self-efficacy. Addressing these factors is crucial for improving patient well-being and managing chronic illness burdens.

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Fear of progressionfinancial toxicitymixed methodsneuromyelitis optica spectrum disordersself‐efficacysocial support

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Area of Science:

  • Neurology
  • Health Economics
  • Psychology

Background:

  • Neuromyelitis Optica Spectrum Disorder (NMOSD) is a rare autoimmune condition with high relapse rates, requiring long-term maintenance therapy.
  • Prolonged treatment for NMOSD can impose a substantial financial burden, potentially exceeding that of other chronic diseases.
  • Limited data exists on financial toxicity (FT) specifically within NMOSD patient populations.

Purpose of the Study:

  • To identify factors influencing financial toxicity (FT) in NMOSD patients.
  • To utilize the ABC-X model as a conceptual framework for understanding FT in NMOSD.
  • To explore the multifaceted nature of FT in this specific patient group.

Main Methods:

  • A mixed-methods approach combining quantitative and qualitative phases.
  • Quantitative phase: 210 NMOSD patients assessed using validated scales for FT, fear of progression, social support, and self-efficacy.
  • Qualitative phase: Semi-structured interviews with 15 NMOSD patients analyzed using phenomenological methods.

Main Results:

  • Fear of disease progression and lower self-efficacy were significantly associated with higher FT (p < 0.05).
  • Qualitative analysis revealed four themes: direct economic burden, suboptimal resource utilization, biased appraisal/coping, and familial crisis.
  • Convergent findings from both methods provided a comprehensive understanding of FT in NMOSD.

Conclusions:

  • NMOSD patients experience significant financial toxicity influenced by clinical, psychological, and social factors.
  • Integrating FT assessment into routine clinical care is essential.
  • Healthcare system challenges in China, such as delayed diagnosis and high costs, exacerbate FT; policy interventions are needed.