Department of Orthopaedics, Harvard Medical School, Massachusetts General Hospital, Boston, MA, USA.
Department of Orthopaedics, Harvard Medical School, Massachusetts General Hospital, Boston, MA, USA; Myositis Support and Understanding, Lincoln, DE, USA.
Neuromuscul Disord. 2023 Dec;33(12):945-950. doi: 10.1016/j.nmd.2023.10.017. Epub 2023 Nov 4.
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 =< 0.001). Given the link between personal financial burden and potential effects on patient outcomes, it is essential for physicians to consider patient financial health when determining management or treatment courses. Identifying specific risk factors that can further exacerbate personal financial burden can help physicians identify vulnerable patients to reduce financial hardship.
美国未充分探索特发性炎性肌病（IIM）的经济负担。我们假设由于多专科就诊、慢性长期护理、残疾相关成本、医疗费用以及美国医疗保健系统整体高支出的风险，IIM 患者会承受相当大的个人经济负担。我们对肌炎支持和理解协会（MSU）的成员进行了调查（应答率为 4.7%），在自我报告患有 IIM 诊断的 470 名调查参与者中，我们使用两种经过验证的衡量标准评估了经济负担：（1）财务担忧评分，（2）财务负担综合评分（FBCS）。我们分别使用逻辑回归和泊松回归确定了与增加 FBCS 相关的因素。有 202 名参与者（43%）表示存在较高的财务担忧，平均 FBCS ± SD 为 1.8 ± 1.9。有医疗补助的参与者发生财务担忧的几率是没有医疗补助的参与者的 3.016 倍（p = 0.011），有私人高免赔额保险的参与者发生财务担忧的几率是没有私人高免赔额保险的参与者的 3.216 倍（p < 0.001）。鉴于个人经济负担与对患者结局的潜在影响之间存在关联，医生在确定管理或治疗方案时必须考虑患者的财务健康状况。确定可能进一步加重个人经济负担的具体风险因素可以帮助医生识别弱势患者，以减轻经济困难。
