Abstract
BackgroundFollowing the initial reports of Chronic Cerebrospinal Venous Insufficiency (CCSVI) and the purported curative potential of venoplasty, (coined the ‘liberation’ procedure) Canadians living with multiple sclerosis (MS) began to travel abroad to receive the unregulated procedure, often placing them at odds with their health providers. The purpose of this study was to determine the factors influencing older MS patients’ decision to undergo the procedure in order to develop more specific and targeted health information.MethodsWe performed secondary analysis of data collected as part of the ‘Canadian Survey of Health Lifestyle and Aging with MS’ from people over the age of 55 years with MS symptoms for 20 or more years. The survey consisted of self-reported information on impairments, disability, participation, demographics, personal and environmental factors. In order to compare respondents who underwent the procedure to those who did not and to develop a predictive model, we created a comparison group using a case–control algorithm, controlling for age, gender and education, and matching procedure cases to controls 1:3. We used multivariate stepwise least likelihood regression of ‘a priori’ variables to determine predictive factors.ResultsThe prevalence of the ‘liberation’ procedure in our sample was 12.8% (95/743), substantially lower than reported in previous studies of complementary/alternative treatments in MS. The predictive model contained five factors; living alone (Odds ratio 0.24, 95%CI 0.09-0.63), diagnosis of anxiety (Odds ratio 0.29, 95%CI 0.10 - 0.84), rating of neurologist’s helpfulness (Odds ratio 0.56, 95%CI 0.44 -0 .71), Body Mass Index (Odds ratio 0.93, 95%CI, 0.89 - 0.98) and perceived physical impact of MS (Odds ratio 1.02, 95%CI 1.01 - 1.04).ConclusionsPredictive factors differed from previous studies of complementary/alternative treatment use likely due to both the invasiveness of the procedure and the advanced age of our study cohort. Our findings suggest that health professionals should target information on the risks and benefits of unregulated procedures to those patients who feel dissatisfied with their neurologist and they should include family members in discussions since they may be providing the logistical support to travel abroad and undergo the ‘liberation’ procedure. Our findings may be applicable to others with chronic disabling conditions who contemplate the user-pay unregulated invasive procedures available to them.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-015-0835-y) contains supplementary material, which is available to authorized users.
Highlights
Following the initial reports of Chronic Cerebrospinal Venous Insufficiency (CCSVI) and the purported curative potential of venoplasty, Canadians living with multiple sclerosis (MS) began to travel abroad to receive the unregulated procedure, often placing them at odds with their health providers
To determine the factors associated with undergoing the ‘liberation’ procedure, we analysed data from the ‘Canadian Survey of Health Lifestyle and Aging with MS’ collected between May 2010 and December 2012 [23], during the height of the ‘liberation’ procedure controversy
Eighty-seven respondents rated the helpfulness of the ‘liberation’ procedure (1 = least helpful, 5 = most helpful)
Summary
Following the initial reports of Chronic Cerebrospinal Venous Insufficiency (CCSVI) and the purported curative potential of venoplasty, (coined the ‘liberation’ procedure) Canadians living with multiple sclerosis (MS) began to travel abroad to receive the unregulated procedure, often placing them at odds with their health providers. Diagnosed in young and middle-aged adults during their career and family-building years, multiple sclerosis profoundly impacts health-related quality of life [1,2,3]. The theory of Chronic Cerebrospinal Venous Insufficiency (CCSVI) emerged in 2009 which purported that impaired venous drainage in the jugular and azygous veins created reflux of blood in the deep cerebral veins which subsequently induced MS inflammatory lesions [8]. In some regions of the world, user-pay clinics began to provide the endovascular treatments (venoplasty) to open obstructed areas in the veins which was coined the ‘liberation’ or the ‘Zamboni’ procedure by some [9]. Recent results of observational and randomized controlled trials [10,11] suggest that CCSVI is a normal incidental finding that is not related to MS lesions
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