Institute of Neuroimmunology and Clinical MS Research (INiMS), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Mult Scler. 2010 Dec;16(12):1507-12. doi: 10.1177/1352458510379819. Epub 2010 Sep 8.
Natalizumab is associated with the potentially life-threatening side-effect progressive multifocal leukoencephalopathy (PML). Little is known about patients' and physicians' risk estimates and attitudes towards natalizumab treatment.
Consecutive natalizumab-treated patients (n = 69) and neurologists (n = 66) in two centres and cooperating private practices received an evidence-based three-page information leaflet about natalizumab-associated PML and an evaluation sheet.
After reading the information, patients were significantly more likely than physicians to intend continuation of natalizumab treatment and willing to accept higher risks of PML: 49% of physicians would stop treatment at a PML risk of 2:10,000 or lower, while only 17% of patients would do so (p < 0.001). This difference could not be explained by risk calculation abilities or lack of understanding. Both groups overestimated natalizumab treatment effects.
Patients had a significantly worse perception of multiple sclerosis as a malignant disease. We conclude that patients were willing to accept a higher risk of PML than neurologists. Coherent with their perception of risks and benefits, patients were also more willing to continue treatment. Open information about treatment-related risks is appreciated and might support shared decision making.
那他珠单抗与潜在危及生命的副作用进行性多灶性白质脑病（PML）有关。关于患者和医生对那他珠单抗治疗的风险估计和态度，知之甚少。
在两个中心和合作的私人诊所，连续接受那他珠单抗治疗的患者（n = 69）和神经科医生（n = 66）收到了一份关于那他珠单抗相关 PML 的基于证据的三页信息传单和评估表。
阅读信息后，患者比医生更有可能继续接受那他珠单抗治疗，并愿意接受更高的 PML 风险：49%的医生会在 PML 风险为 2:10,000 或更低时停止治疗，而只有 17%的患者会这样做（p < 0.001）。这种差异不能用风险计算能力或缺乏理解来解释。两组都高估了那他珠单抗的治疗效果。
患者对多发性硬化症的恶性程度的看法明显较差。我们得出结论，患者愿意接受比神经科医生更高的 PML 风险。与他们对风险和收益的看法一致，患者也更愿意继续治疗。关于治疗相关风险的公开信息受到欢迎，并可能支持共同决策。
