The personal financial burden associated with idiopathic inflammatory myopathies

• Published in: Neuromuscular disorders : NMD 2023-12, Vol.33 (12), p.945-950
• Main Authors: Hua, Catherine, Bhashyam, Abhiram R, Lubinus, Manuel, Wilson, Lynn, Bhai, Salman
• Format: Article
• Language: English
• Subjects: Cost of Illness; Disabled Persons; Financial Stress; Health Expenditures; Humans; Myositis; United States
• ISSN: 0960-8966; 1873-2364
• DOI: 10.1016/j.nmd.2023.10.017

The economic burden of idiopathic inflammatory myopathies (IIMs) within the US is underexplored. We hypothesized that IIMs patients experience considerable personal financial burden due to risks of multi-specialist visits, chronic long-term care, costs associated with disability, medical treatment, and overall high spending costs within the US healthcare system. We surveyed members of Myositis Support and Understanding (MSU) (response rate 4.7 %), and of the 470 survey participants that self-reported with diagnoses of IIMs, we assessed financial burden using two validated measures: (1) Financial Worry Score, and (2) Financial Burden Composite Score (FBCS). We determined factors associated with increased FBCS using logistic and Poisson regression respectively. High financial worry was endorsed by 202 participants (43 %) and the average FBCS ± SD was 1.8 ± 1.9. The odds of financial worry among participants with Medicaid is 3.016 times the odds of financial worry among participants without Medicaid (p = 0.011), and the odds of financial worry among participants with private high-deductible insurance is 3.216 times the odds of financial worry among participants who do not have private high-deductible insurance (p =