Metz Luanne M, Greenfield Jamie, Marrie Ruth Ann, Jette Nathalie, Blevins Gregg, Svenson Lawrence W, Alikhani Katayoun, Wall Winona, Dhaliwal Raveena, Suchowersky Oksana
1Department of Clinical Neurosciences,University of Calgary,Calgary,Alberta,Canada.
3Departments of Internal Medicine and Community Health Sciences,University of Manitoba,Winnipeg,Manitoba,Canada.
Can J Neurol Sci. 2016 May;43(3):360-7. doi: 10.1017/cjn.2015.350. Epub 2016 Feb 4.
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.
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.
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.
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.
许多患有多发性硬化症（MS）的加拿大人最近前往国外，接受一种被称为慢性脑脊髓静脉功能不全（CCSVI）的假定病症的治疗。在此，我们描述他们前往的地点和时间，并描述参与这种基于非循证医学的CCSVI治疗的MS患者的基线特征。
我们进行了一项纵向观察性研究，使用在线问卷收集患者报告的关于CCSVI治疗后的安全性、体验和结果的信息。在2011年7月至2013年3月期间，招募了艾伯塔省所有MS患者的便利样本。
共有868人登记；704人纳入本次横断面基线分析。其中，128名（18.2%）参与者回顾性报告在2010年4月至2012年9月期间接受了CCSVI治疗。报告接受CCSVI治疗的参与者比例从2010年的80人（62.5%）降至2011年的40人（31.1%），2012年为8人（6.3%）。在多变量逻辑回归分析中，CCSVI治疗与疾病持续时间较长、继发进展性临床病程和残疾程度较高独立相关。
尽管所有类型的MS患者都寻求CCSVI治疗，但参与的一个主要驱动因素是残疾程度较高。这突出表明，残疾程度最高的人最容易受到未经证实的实验性治疗的影响。随着时间的推移，参与CCSVI治疗的人数逐渐减少，这可能反映了接受治疗患者的期望未得到满足、媒体关注度下降，或者是那些想要接受治疗的人在CCSVI假说被广泛宣传后不久就接受了治疗。
