ObjectivePeople with multiple sclerosis (MS) are living longer so strategies to enhance long-term health are garnering more interest. We aimed to create a profile of ageing with MS in Canada by recruiting 1250 (5% of the Canadian population above 55 years with MS) participants and focusing data collection on health and lifestyle factors, disability, participation and quality of life to determine factors associated with healthy ageing.DesignNational multicentre postal survey.SettingRecruitment from Canadian MS clinics, MS Society of Canada chapters and newspaper advertisements.ParticipantsPeople aged 55 years or older with MS symptoms more than 20 years.Outcome measuresValidated outcome measures and custom-designed questions examining MS disease characteristics, living situation, disability, comorbid conditions, fatigue, health behaviours, mental health, social support, impact of MS and others.ResultsOf the 921 surveys, 743 were returned (80.7% response rate). Participants (mean age 64.6±6.2 years) reported living with MS symptoms for an average of 32.9±9.5 years and 28.6% were either wheelchair users or bedridden. There was only 5.4% missing data and 709 respondents provided optional qualitative information. According to data derived from the 2012 Canadian Community Health Survey of Canadians above 55 years of age, older people with MS from this survey sample are about eight times less likely to be employed full-time. Older people with MS were less likely to engage in regular physical activity (26.7%) compared with typical older Canadians (45.2%). However, they were more likely to abstain from alcohol and smoking.ConclusionsDespite barriers to participation, we were able to recruit and gather detailed responses (with good data quality) from a large proportion of older Canadians with MS. The data suggest that this sample of older people with MS is less likely to be employed, are less active and more disabled than other older Canadians.

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.

BackgroundThe 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.ObjectiveThis study explored decision making regarding the controversial liberation procedure among people with MS.Subjects and methodsFifteen 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.ResultsParticipants 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.ConclusionKnowledge of factors that helped to popularize the liberation procedure in Canada may inform shared decision making concerning this and future controversies in MS.

Despite the absence of scientific evidence demonstrating the efficacy of the “liberation procedure” in treating multiple sclerosis (MS), thousands of MS patients worldwide have undergone the procedure. The study objective was to explore the experience of liberation procedure decision making for individuals with MS. Fifteen adults in Newfoundland and Labrador, Canada, each participated in an in-depth interview. The data analysis revealed three groups of people: “waiters,” “early embracers,” and “late embracers.” Using van Manen’s hermeneutic phenomenological approach, we identified three themes each in the stories of the early and late embracers and four themes in the waiters’ stories. A characteristic of the late embracers and waiters was skepticism, whereas desperation set the embracers apart from the waiters. With a deeper understanding of the experience, nurses can be more attuned to the perspectives of MS patients while helping them make informed decisions about undergoing the liberation procedure.

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.