Predictors of chronic cerebrospinal venous insufficiency procedure use among older people with multiple sclerosis: a national case-control study.

BACKGROUND: 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. 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. METHODS: We 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. RESULTS: The 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). CONCLUSIONS: Predictive 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.

Navigating the "liberation procedure": a qualitative study of motivating and hesitating factors among people with multiple sclerosis.

BACKGROUND: The debate within the multiple sclerosis (MS) community initiated by the chronic cerebrospinal venous insufficiency (CCSVI) hypothesis and the subsequent liberation procedure placed some people with MS at odds with health care professionals and researchers. OBJECTIVE: This study explored decision making regarding the controversial liberation procedure among people with MS. SUBJECTS AND METHODS: Fifteen people with MS (procedure, n=7; no procedure, n=8) participated in audiotaped semistructured interviews exploring their thoughts and experiences related to the liberation procedure. Data were transcribed and analyzed using an iterative, consensus-based, thematic content-analysis approach. RESULTS: Participants described an imbalance of motivating factors affirming the procedure compared to hesitating factors that provoked the participant to pause or reconsider when deciding to undergo the procedure. Collegial conversational relationships with trusted sources (eg, MS nurse, neurologist) and ability to critically analyze the CCSVI hypothesis were key hesitating factors. Fundraising, family enthusiasm, and the ease of navigation provided by medical tourism companies helped eliminate barriers to the procedure. CONCLUSION: Knowledge of factors that helped to popularize the liberation procedure in Canada may inform shared decision making concerning this and future controversies in MS.

Effectiveness of a novel community exercise transition program for people with moderate to severe neurological disabilities.

PURPOSE: To determine the effectiveness of a community re-integration exercise initiative on function, mood, participation, and exercise adherence for persons with moderate to severe neurological conditions (stroke, multiple sclerosis, etc.). METHODS: We recruited 29 adults (able to walk at least 3 m with assistance) discharged from an outpatient rehabilitation program for the 10 week intervention which was comprised of two components: circuit training and guided transition to a standard gym setting. We evaluated participants before and after the intervention and at four month follow up, including functional balance and mobility using the Timed Up and Go Test, walking endurance using the 6 Minute Walk Test, health related quality of life (HR QoL) using a visual analogue scale, activity and participation using the Frenchay Activities Index and mood using the Hospital Anxiety and Depression Scale. RESULTS: Twenty-seven participants completed the intervention. The only significant improvement was in HR QoL. Forty-four percent of participants continued to exercise after cessation of the program. Those who continued to exercise (Exercisers n = 12) experienced more improvement in HR QoL than Non-Exercisers (n = 15). CONCLUSIONS: This re-integration initiative for people with neurological impairments improved HR QoL and facilitated independent exercise for 44% of participants. The novel component of the program, which facilitated transition to standard gym equipment, likely contributed to improved exercise adherence in the longer term.