Background: Health-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.
Baseline data from a population-based study examining the health-related quality of life (HRQL) of MS patients about to begin disease modifying therapy was used to determine the factors associated with the HRQL of Saskatchewan adults with relapsing-remitting MS. Participants completed a self-report questionnaire regarding demographic and socioeconomic status, fatigue, comorbid medical conditions, disability level (EDSS), number of attacks in past 6 months, illness intrusiveness (Illness Intrusiveness Ratings Scale), depression (Beck Depression Inventory), and HRQL (SF-36 Health Status Survey). Multiple linear regression models were used to identify the factors associated with the physical and mental health summary scores of the SF-36. We found poorer physical HRQL in those who are female; older; not working; have musculoskeletal or respiratory problems; greater fatigue, higher disability scores, and more MS attacks. High illness intrusiveness; digestive system problems; genitourinary problems; and headaches were associated with poorer mental HRQL. Interestingly, we found an interaction between sex and age in mental HRQL, with worse mental health in older men but better mental health in older women. These findings may assist health care providers in identifying patients who may be at risk for decline in their HRQL, permitting appropriate and timely interventions.
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%), chronic fatigue syndrome (16%), depression (16%), and migraine (14%). Differences in HRQL between people with and without urinary incontinence, arthritis, hypertension, chronic fatigue syndrome, and depression were either clinically important or statistically significant at the .05 level in bivariate analyses. Only urinary incontinence and depression, however, were negatively associated with HRQL in a multivariate analysis, which explained 26% of the variance. Lower levels of education and receiving social assistance were also negatively associated with HRQL, with social assistance contributing more to the variance in HRQL than either comorbidity.
Multiple sclerosis (MS) is a complex chronic neurological condition typically seen in young adults. Estimated prevalence rates of MS range from 55 to 240 per 100,000 in Canada, [1][2][3] making it one of the five most highly prevalent MS countries in the world (Northern US, Northern Europe, Australia, New Zealand). 4 The associated disability caused by this inflammatory autoimmune disorder of the central nervous system is substantial. Physical and psychosocial dimensions as well as overall quality of life are adversely affected by MS. 5,6 The array ABSTRACT: Background: Persons with multiple sclerosis (MS) represent a small segment of the population, but given the progression of the disease, they experience substantial physical, psychosocial and economic burdens. Objective: The primary aim was to compare demographic characteristics, health status, health behaviours, health care resource utilization and access to health care of the community dwelling populations with and without MS. Methods: Cross-sectional survey using data from the Canadian Community Health Survey (CCHS 1.1). Adjusted analyses were performed to assess differences between persons with MS and the general population, after controlling for age and sex. Normalized sampling weights and bootstrap variance estimates were used. Results: Respondents with MS were 7.6 times (95% CI: 5.4, 10.7) more likely to have health-related quality of life scores that reflected severe impairment than respondents without MS. Respondents with MS were 12.2 times (95% CI: 8.6, 17.2) to rate their health as 'poor' or 'fair' than the general population. Urinary incontinence and chronic fatigue syndrome were 18.7 times (95% CI: 12.5, 28.2) and 21.9 times (95% CI: 11.9, 40.3), more likely to be reported by respondents with MS than those without. Differences between the two populations also existed in terms of health care resource utilization and access and health behaviours. Conclusion: Large discrepancies in health status and health care utilization existed between persons with MS who reside in the community and the general population according to all indicators used. Health care needs of persons with MS were also not met. RÉSUMÉ: Sclérose en plaques, état de santé et utilisation des soins de santé au Canada.Contexte : Les individus atteints de sclérose en plaques (SEP) ne constituent qu'une petite partie de la population, mais ils portent un lourd fardeau physique, psychosocial et économique à cause de la progression de la maladie. Objectif : Le but premier de cette étude était de comparer les caractéristiques démographiques, l'état de santé, les comportements de santé, l'utilisation des ressources de soins de santé et l'accès aux soins de santé des individus vivant dans la collectivité, atteints ou non de la SEP. Méthodes : Il s'agit d'une étude transversale des données de l'Enquête sur la santé dans les collectivités canadiennes (ESCC 1.1). Nous avons analysé les données pour évaluer les différences entre les individus atteints de SEP et la population en général, après aju...
Fatigue management interventions for individuals with multiple sclerosis (MS) often feature structured programmes requiring repeated, in-person attendance that is not possible for all individuals. We sought to determine whether MS INFoRm, a self-directed fatigue management resource for individuals with MS, was worth further, more rigorous evaluation. Our indicators of worthiness were actual use of the resource by participants over 3 months, reductions in fatigue impact and increases in self-efficacy, and participant reports of changes in fatigue management knowledge and behaviours. This was a single-group, mixed-methods, before-after pilot study in individuals with MS reporting mild to moderate fatigue. Thirty-five participants were provided with MS INFoRm by a USB flash drive to use at home for 3 months, on their own volition. Twenty-three participants completed all standardized questionnaires, semi-structured interviews and study process measures. Participants reported actively using MS INFoRm over the 3-month study period (median total time spent using MS INFoRm=315 min) as well as significantly lower overall fatigue impact (Modified Fatigue Impact Scale: t=2.6, P=0.01), increased knowledge of MS fatigue (z=-2.8, P=0.01) and greater confidence in managing MS fatigue (z=-3.3, P=0.001). Individuals with significant reductions in fatigue impact also reported behavioural changes including tracking fatigue, better communication with others, greater awareness, improved quality of life and being more proactive. This study provides evidence that further rigorous evaluation of MS INFoRm, a self-directed resource for managing fatigue, is worth pursuing.
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