Multiple sclerosis risk perception and acceptance for Brazilian patients

ABSTRACT The perception of multiple sclerosis (MS) severity and risk associated with therapies might influence shared decision making in different countries. We investigated the perception of MS severity and factors associated with risk acceptance in Brazil in 96 patients with relapsing-remitting MS using a standardized questionnaire and compared this with two European cohorts. Multiple sclerosis was perceived as a very severe disease and the risk of developing progressive multifocal leukoencephalopathy due to natalizumab was seen as moderate to high. Seventy-six percent considered a risk of 1:1,000, or higher, an impediment for natalizumab use. Older age was the only variable associated with higher risk acceptance and our patients showed a more conservative profile than German and Spanish patients. Our patients perceived MS severity and progressive multifocal leukoencephalopathy risk similarly to elsewhere, but their willingness to take risks was more conservative. This should be considered when discussing therapeutic options and it might have an impact on guideline adaptations.

摘要 不同国家中，患者对多发性硬化（multiple sclerosis, MS）严重程度及相关治疗风险的认知，可能会影响共同决策流程。本研究针对巴西96名复发缓解型多发性硬化（relapsing-remitting MS）患者，采用标准化问卷开展调查，以评估其对MS严重程度的认知及与风险接受度相关的影响因素，并将结果与两个欧洲队列的研究数据进行对比。
研究结果显示，受试患者将多发性硬化视为极为严重的疾病，且认为那他珠单抗（natalizumab）引发进行性多灶性白质脑病（progressive multifocal leukoencephalopathy）的风险处于中高水平。76%的受访者认为，当风险达到1:1000及以上时，会成为使用那他珠单抗的阻碍因素。年龄更大是唯一与更高风险接受度相关的变量，且巴西受试患者的风险接受态度较德国与西班牙患者更为保守。
受试患者对MS严重程度及进行性多灶性白质脑病风险的认知与其他地区人群相似，但他们的风险承担意愿更为保守。在讨论治疗方案时应考虑这一差异，该结果或对临床指南的修订产生影响。