Karen V. L. Turpin

The burden of multiple sclerosis: A community health survey

BackgroundHealth-related quality of life (HRQL) in persons with multiple sclerosis (MS) who reside within the community relative to the general population is largely unknown. Data from the Canadian Community Health Survey Cycle 1.1 (CCHS 1.1) were used to compare HRQL of persons with MS and the general population.MethodsA representative sample of adults (18 years or older) from the cross sectional population health survey, CCHS 1.1, was examined to compare scores on the Health Utilities Index Mark 3 (HUI3), a generic preference-based HRQL measure, of respondents with (n = 302) and without (n = 109,741) MS. Selected sociodemographic covariates were adjusted for in ANCOVA models. Normalized sampling weights and bootstrap variance estimates were used in the analysis.ResultsThe mean difference in overall HUI3 scores between respondents with and without MS was 0.25 (95% CI: 0.20, 0.31); eight times greater than the clinically important difference. The largest differences in scores were seen with the ambulation (0.26; 95% CI: 0.20, 0.32) and pain attributes (0.14; 95% CI: 0.09, 0.19). Clinically important differences with dexterity and cognition were also observed.ConclusionWhile the proportion of the Canadian population with MS is relatively small in comparison to other diseases, the magnitude of the burden is severe relative to the general population.

Comorbidity and Health-Related Quality of Life in People with Multiple Sclerosis

This study examined associations between comorbidity and health-related quality of life (HRQL) in people with multiple sclerosis (MS). Data were derived from the Canadian Community Health Survey (CCHS) Cycle 1.1, a cross-sectional survey conducted by Statistics Canada. A nationally representative sample of community-dwelling Canadians was interviewed to determine whether they had been diagnosed with various chronic conditions. Participants were also administered the Health Utilities Index Mark 3 (HUI3) questionnaire to evaluate HRQL. Of the 131,535 participants, 335 reported having MS. Comorbidities listed by at least 10% of respondents with MS were assessed for their relation to HRQL, with age, sex, education, marital status, income, and number of comorbidities included as covariates. Respondents averaged 1.6 comorbidities. Eight comorbidities were experienced by at least 10% of respondents: back problems (35%), nonfood allergies (29%), urinary incontinence (28%), arthritis (26%), hypertension (17%), chr...

Traumatic Injury and Multiple Sclerosis: A Systematic Review and Meta-Analysis.

A systematic review/meta-analysis of literature addressing a possible association between traumatic injury and onset of multiple sclerosis was conducted. Medline, Embase, Cochrane DSR, Ovid HealthStar, CINAHL, ISI Web of Science and Scopus were searched for analytical studies from 1950 to 2011. Two investigators independently reviewed articles for inclusion, assessing their quality using the Newcastle-Ottawa Scale. Of the 13 case-control studies included, 8 were moderate quality and 5 low; of the 3 cohort studies 2 were high and 1 moderate. Meta-analysis including moderate and low quality case-control studies produced a modest but significant odds ratio: 1.41 (95% confidence interval: 1.03, 1.93). However, when low quality studies were excluded, the resulting odds ratio was non-significant. Cohort studies produced a non-significant standardized incidence ratio of 1.00 (95% confidence interval: 0.86, 1.16). These findings support the conclusion that there is no association between traumatic injury and multiple sclerosis onset; more high quality cohort studies would help to confirm this observation.

Change in the Health-Related Quality of Life of Multiple Sclerosis Patients over 5 Years.

This study examined whether multiple sclerosis (MS) patients (N = 3779) experience change in their perceived health-related quality of life (HRQOL) over a 5-year period, and investigated baseline factors that may be related to change in HRQOL. Data from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry were used to address the studys research questions. Results for the physical and mental component scores of the 12-item Short Form Health Status Survey, version 2 (SF-12v2), indicated that most of the MS sample experienced no significant changes over a 5-year period. However, 40% and 36% of the sample experienced clinically significant declines in their physical and mental HRQOL, respectively, over the 5-year period. After controlling for baseline scores, having a lower education, having greater duration since disease diagnosis, not being employed, having a lower income, not receiving a disease-modifying therapy, and taking a greater number of prescription medications were significantly associated with a clinically significant decline in physical HRQOL. After controlling for baseline scores, not being married/partnered, experiencing a greater number of relapses, not being employed, having a lower income, and taking a greater number of prescription medications were significantly associated with a clinically significant decline in mental HRQOL. Overall, most of the MS sample remained stable in their HRQOL over time. However, approximately four out of every ten patients experienced a clinically important decline in their HRQOL. While the association was statistically significant, the sociodemographic and disease-related factors linked with decline did not strongly predict decline over a 5-year period.

The Experience of Persons With Multiple Sclerosis Using MS INFoRm: An Interactive Fatigue Management Resource

We aimed to understand participants’ experiences with a self-guided fatigue management resource, Multiple Sclerosis: An Interactive Fatigue Management Resource (MS INFoRm), and the extent to which they found its contents relevant and useful to their daily lives. We recruited 35 persons with MS experiencing mild to moderate fatigue, provided them with MS INFoRm, and then conducted semistructured interviews 3 weeks and 3 months after they received the resource. Interpretive description guided the analysis process. Findings indicate that participants’ experience of using MS INFoRm could be understood as a process of change, influenced by their initial reactions to the resource. They reported experiencing a shift in knowledge, expectations, and behaviors with respect to fatigue self-management. These shifts led to multiple positive outcomes, including increased levels of self-confidence and improved quality of life. These findings suggest that MS INFoRm may have a place in the continuum of fatigue management interventions for people with MS.