BACKGROUND:Many Canadians with multiple sclerosis (MS) have recently travelled internationally to have procedures for a putative condition called chronic cerebrospinal venous insufficiency (CCSVI). Here, we describe where and when they went and describe the baseline characteristics of persons with MS who participated in this non-evidence-based medical tourism for CCSVI procedures. METHODS:We conducted a longitudinal observational study that used online questionnaires to collect patient-reported information about the safety, experiences, and outcomes following procedures for CCSVI. A convenience sample of all Albertans with MS was recruited between July 2011 and March 2013. RESULTS:In total, 868 individuals enrolled; 704 were included in this cross-sectional, baseline analysis. Of these, 128 (18.2%) participants retrospectively reported having procedures for CCSVI between April 2010 and September 2012. The proportion of participants reporting CCSVI procedures declined from 80 (62.5%) in 2010, to 40 (31.1%) in 2011, and 8 (6.3%) in 2012. In multivariable logistic regression analysis, CCSVI procedures were independently associated with longer disease duration, secondary progressive clinical course, and greater disability status. CONCLUSIONS:Although all types of people with MS pursued procedures for CCSVI, a major driver of participation was greater disability. This highlights that those with the greatest disability are the most vulnerable to unproven experimental procedures. Participation in CCSVI procedures waned over time possibly reflecting unmet expectations of treated patients, decreased media attention, or that individuals who wanted procedures had them soon after the CCSVI hypothesis was widely publicized.

译文

背景:许多多发性硬化症(MS)的加拿大人最近已出国旅行,寻求一种称为慢性脑脊髓静脉功能不全(CCSVI)的推定性疾病的治疗程序。在这里,我们描述了他们去哪儿,什么时候去,并描述了参加这种非循证医学旅行的CCSVI程序的MS患者的基线特征。
方法:我们进行了一项纵向观察性研究,该研究使用在线问卷收集了患者报告的有关CCSVI程序的安全性,经验和结果的信息。我们在2011年7月至2013年3月期间收集了所有艾伯塔省MS患者的便利样本。
结果:共计868人入组; 704个样本包含在此横断面基线分析中。在这些参与者中,有128名(18.2%)回顾性地报告了在2010年4月至2012年9月之间进行CCSVI程序的参与者。报告CCSVI程序的参与者的比例从2010年的80(62.5%)下降到2011年的40(31.1%)和8 (6.3%)在2012年。在多变量Logistic回归分析中,CCSVI程序与疾病持续时间较长,继发性进行性临床病程以及更高的残疾状况独立相关。
结论:尽管所有类型的MS患者都遵循CCSVI程序,但参与的主要动力是更大的残疾。这突出表明,残障最大的人最容易受到未经证实的实验程序的伤害。随着时间的流逝,参与CCSVI程序的人数逐渐减少,这可能反映出对治疗患者的期望未得到满足,媒体关注度降低,或者在广泛宣传CCSVI假设后,想要进行该程序的人很快就接受了该程序。

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