Abstract

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.

Highlights

  • 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

  • The Expanded Disability Status Scale (EDSS) is the primary disease specific health measure for MS [5], but it is heavily weighted toward ambulation and is unable to provide a broader comparison of HRQL attributes among different conditions and the general population

  • Unadjusted overall Health Utilities Index Mark 3 (HUI3) scores were considerably lower for respondents with MS (0.57 versus 0.88); this difference was more than 10 times that would be considered clinically important (Table 1)

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Summary

Introduction

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. The evaluation of HRQL of persons with MS has been primarily in clinical or patient study groups. Relying solely on these cohorts limits the external validity of these findings and generates possible selection bias [6]. Using the SF-36, lower scores were reported for only physical dimensions in persons with MS as compared to the US population; mental health scores were comparable to the general population [8] Both physical and mental health components were lower for patients with MS than the Norwegian general population [7]. Others have reported problems with balance, cognition, visual disturbance, bowel and bladder difficulties, spasticity, depression, anxiety, bipolar disorders, speech problems and fatigue for persons with MS who reside within the community [9,11,12]

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