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      Which symptoms contribute the most to patients’ perception of health in multiple sclerosis?

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          Abstract

          Background

          Multiple sclerosis is a polysymptomatic disease. Little is known about relative contributions of the different multiple sclerosis symptoms to self-perception of health.

          Objectives

          To investigate the relationship between symptom severity in 11 domains affected by multiple sclerosis and self-rated health.

          Methods

          Multiple sclerosis patients in two multiple sclerosis centers assessed self-rated health with a validated instrument and symptom burden with symptoMScreen, a validated battery of Likert scales for 11 domains commonly affected by multiple sclerosis. Pearson correlations and multivariate linear regressions were used to investigate the relationship between symptoMScreen scores and self-rated health.

          Results

          Among 1865 multiple sclerosis outpatients (68% women, 78% with relapsing–remitting multiple sclerosis, mean age 46.38 ± 12.47 years, disease duration 13.43 ± 10.04 years), average self-rated health score was 2.30 (‘moderate to good’). Symptom burden (composite symptoMScreen score) highly correlated with self-rated health ( r = 0.68, P < 0.0001) as did each of the symptoMScreen domain subscores. In regression analysis, pain ( t = 7.00), ambulation ( t = 6.91), and fatigue ( t = 5.85) contributed the highest amount of variance in self-rated health ( P < 0.001).

          Conclusions

          Pain contributed the most to multiple sclerosis outpatients’ perception of health, followed by gait dysfunction and fatigue. These findings suggest that ‘invisible disability’ may be more important to patients’ sense of wellbeing than physical disability, and challenge the notion that physical disability should be the primary outcome measure in multiple sclerosis.

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          Most cited references21

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          Long‐term evolution of multiple sclerosis disability in the treatment era

          Objective To characterize the accrual of long‐term disability in a cohort of actively treated multiple sclerosis (MS) patients and to assess whether clinical and magnetic resonance imaging (MRI) data used in clinical trials have long‐term prognostic value. Methods This is a prospective study of 517 actively managed MS patients enrolled at a single center. Results More than 91% of patients were retained, with data ascertained up to 10 years after the baseline visit. At this last assessment, neurologic disability as measured by the Expanded Disability Status Scale (EDSS) was stable or improved compared to baseline in 41% of patients. Subjects with no evidence of disease activity (NEDA) by clinical and MRI criteria during the first 2 years had long‐term outcomes that were no different from those of the cohort as a whole. 25‐OH vitamin D serum levels were inversely associated with short‐term MS disease activity; however, these levels had no association with long‐term disability. At a median time of 16.8 years after disease onset, 10.7% (95% confidence interval [CI] = 7.2–14%) of patients reached an EDSS ≥ 6, and 18.1% (95% CI = 13.5–22.5%) evolved from relapsing MS to secondary progressive MS (SPMS). Interpretation Rates of worsening and evolution to SPMS were substantially lower when compared to earlier natural history studies. Notably, the NEDA 2‐year endpoint was not a predictor of long‐term stability. Finally, the data call into question the utility of annual MRI assessments as a treat‐to‐target approach for MS care. Ann Neurol 2016;80:499–510
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            Evaluation of no evidence of disease activity in a 7-year longitudinal multiple sclerosis cohort.

            With multiple and increasingly effective therapies for relapsing forms of multiple sclerosis (MS), disease-free status or no evidence of disease activity (NEDA) has become a treatment goal and a new outcome measure. However, the persistence of NEDA over time and its predictive power for long-term prognosis are unknown.
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              Predicting quality of life in multiple sclerosis: accounting for physical disability, fatigue, cognition, mood disorder, personality, and behavior change.

              Health-related quality of life (HQOL) is poor in multiple sclerosis (MS) but the clinical precipitants of the problem are not well understood. Previous correlative studies demonstrated relationships between various clinical parameters and diminished HQOL in MS. Unfortunately, these studies failed to account for multiple predictors in the same analysis. We endeavored to determine what clinical parameters account for most variance in predicting HQOL, and employability, while accounting for disease course, physical disability, fatigue, cognition, mood disorder, personality, and behavior disorder. In 120 MS patients, we measured HQOL (MS Quality of Life-54) and vocational status (employed vs. disabled) and then conducted detailed clinical testing. Data were analyzed by linear and logistic regression methods. MS patients reported lower HQOL (p<0.001) and were more likely to be disabled (45% of patients vs. 0 controls). Physical HQOL was predicted by fatigue, depression, and physical disability. Mental HQOL was associated with only depression and fatigue. In contrast, vocational status was predicted by three cognitive tests, conscientiousness, and disease duration (p<0.05). Thus, for the first time, we predicted HQOL in MS while accounting for measures from these many clinical domains. We conclude that self-report HQOL indices are most strongly predicted by measures of depression, whereas vocational status is predicted primarily by objective measures of cognitive function. The findings highlight core clinical problems that merit early identification and further research regarding the development of effective treatment.
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                Author and article information

                Journal
                Mult Scler J Exp Transl Clin
                Mult Scler J Exp Transl Clin
                MSO
                spmso
                Multiple Sclerosis Journal - Experimental, Translational and Clinical
                SAGE Publications (Sage UK: London, England )
                2055-2173
                05 September 2017
                Jul-Sep 2017
                : 3
                : 3
                : 2055217317728301
                Affiliations
                [1-2055217317728301]Multiple Sclerosis Comprehensive Care Center, New York University Langone Medical Center, USA
                [2-2055217317728301]Faculty of Health, York University, Canada
                [3-2055217317728301]Department of Biostatistics, University of Alabama at Birmingham School of Public Health, USA
                [4-2055217317728301]Barnabas Multiple Sclerosis Comprehensive Care Center, RJWBarnabas Health, USA
                Author notes
                [*]4700 Keele Street, Behavioural Science Building 130, Toronto, ON, L4J 7K9, Canada. rrgreen@ 123456yorku.ca
                Author information
                http://orcid.org/0000-0003-3549-949X
                Article
                10.1177_2055217317728301
                10.1177/2055217317728301
                5588807
                28904811
                1c3e0d23-e6db-48df-8d7a-fd83508d61e6
                © The Author(s) 2017

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                : 6 July 2017
                : 3 August 2017
                Categories
                Original Research Paper
                Custom metadata
                July-September 2017

                multiple sclerosis,self-rated health,disability,self-report,symptom

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