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      Patient Preference and Adherence (submit here)

      This international, peer-reviewed Open Access journal by Dove Medical Press focuses on the growing importance of patient preference and adherence throughout the therapeutic process. Sign up for email alerts here.

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      Self-reported quality of life in multiple sclerosis patients: preliminary results based on the Polish MS Registry

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          Abstract

          Background

          The aim of the study was to analyze selected clinical and sociodemographic factors and their effects on the quality of life (QoL) of multiple sclerosis (MS) patients registered in the Polish MS Registry.

          Methods

          This was a cross-sectional observational study performed in Poland. Data on personal and disease-specific factors were collected between January 1, 2011, and December 31, 2015, via the web portal of the Polish MS Registry. All patients were assessed by a physician and asked to complete the Polish language versions of the following self-evaluation questionnaires: EuroQol 5-Dimensions, EuroQoL Visual Analog Scale, and Multiple Sclerosis Impact Scale. Univariate analysis and logistic regression were performed to determine the factors associated with QoL.

          Results

          The study included 2,385 patients (female/male ratio 2.3:1) with clinically confirmed MS (mean age 37.8±9.2 years). Average EuroQol 5-Dimensions index was 0.72±0.24, and the mean EuroQoL Visual Analog Scale score was 64.2±22.8. The average Multiple Sclerosis Impact Scale score was 84.6±11.2 (62.2±18.4 for physical condition and 23.8±7.2 for mental condition). Lower QoL scores were significantly associated with higher level of disability (odds ratio [OR], 0.932; 95% confidence interval [CI], 0.876–0.984; P=0.001), age >40 years (OR, 1.042; 95% CI, 0.924–1.158; P=0.012), longer disease duration (OR, 0.482; 95% CI, 0.224–0.998; P=0.042), and lack of disease modifying therapies (OR, 0.024; 95% CI, 0.160–0.835; P=0.024). No significant associations were found between QoL, sex, type of MS course, patient’s education, and marital status.

          Conclusion

          The Polish MS Registry is the first national registry for long-term observation that allows for self-evaluation of the QoL. QoL of Polish patients with MS is significantly lower compared with the rest of the population. The parameter is mainly affected by the level of disability, duration of the disease, and limited access to immunomodulatory therapy.

          Most cited references38

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          The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure.

          J. Höbart (2001)
          Changes in health policy have underlined the importance of evidence-based clinical practice and rigorous evaluation of patient-based outcomes. As patient-based outcome measurement is particularly important in treatment trials of multiple sclerosis, a number of disease-specific instruments have been developed recently. One limitation of these instruments is that none was developed using the standard psychometric approach of reducing a large item pool generated from people with multiple sclerosis. Consequently, an outcome measure for clinical trials of multiple sclerosis that is disease specific and combines patient perspective with rigorous psychometric methods will complement existing instruments. The aim of this study was to develop such a measure. Standard psychometric methods were used. A pool of 129 questionnaire items was generated from interviews with 30 people with multiple sclerosis, expert opinion and literature review. The questionnaire was administered by postal survey to 1530 people selected randomly from the Multiple Sclerosis Society membership database. Redundant items and those with limited measurement properties were removed. The remaining items (n = 41) were grouped into scales using factor analysis, and then refined to form the Multiple Sclerosis Impact Scale (MSIS-29), an instrument measuring the physical (20 items) and psychological (nine items) impact of multiple sclerosis. Five psychometric properties of the MSIS-29 (data quality, scaling assumptions, acceptability, reliability and validity) were examined in a separate postal survey of 1250 Multiple Sclerosis Society members. A preliminary responsiveness study of the MSIS-29 was undertaken in 55 people admitted for rehabilitation and intravenous steroid treatment of relapses. The MSIS-29 satisfied all psychometric criteria. Data quality was excellent, missing data were low (maximum 3.9%), item test-re-test reliability was high (r = 0.65-0.90) and scale scores could be generated for >98% of respondents. Item descriptive statistics, item convergent and discriminant validity, and factor analysis indicated that it was legitimate to generate scores for MSIS-29 scales by summing items. MSIS-29 scales showed good variability, small floor and ceiling effects, high internal consistency (Cronbach's alpha
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            Lipid management in the prevention of stroke: a meta-analysis of fibrates for stroke prevention

            Background Fibrates has been extensively used to improve plasma lipid levels and prevent adverse cardiovascular outcomes. However, the effect of fibrates on stroke is unclear at the present time. We therefore carried out a comprehensive systematic review and meta-analysis to evaluate the effects of fibrates on stroke. Methods We systematically searched Medline, Embase, the Cochrane Central Register of Controlled Trials, reference lists of articles, and proceedings of major meetings to identify studies for our analysis. We included randomized placebo controlled trials which reported the effects of fibrates on stroke. Relative risk (RR) was used to measure the effect of fibrates on the risk of stroke under random effect model. The analysis was further stratified by factors that could affect the treatment effects. Results Overall, fibrate therapy was not associated with a significant reduction on the risk of stroke (RR, 1.02, 95% CI, 0.90 to 1.16, P = 0.78). In the subgroup analyses, we observed that gemfibrozil therapy showed a beneficial effect on stroke (RR, 0.72, 95% CI, 0.53 to 0.98, P = 0.04). Similarly, fibrate therapy comparing to placebo had no effect on the incidence of fatal stroke. Subgroup analysis suggested that fibrate therapy showed an effect on fatal stroke when the Jadad score more than 3 (RR, 0.41, 95% CI, 0.17 to 1.00, P = 0.049). Furthermore, a sensitivity analysis indicated that fibrate therapy may play a role in fatal stroke (RR, 0.49, 95% CI, 0.26 to 0.93, P = 0.03) for patients with previous diabetes, cardiovascular disease or stroke. Conclusions Our study indicated that fibrate therapy might play an important role in reducing the risk of fatal stroke in patients with previous diabetes, cardiovascular disease or stroke. However, it did not have an effect on the incidence of stroke.
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              Predictors of quality of life among multiple sclerosis patients: a comprehensive analysis.

              Multiple sclerosis (MS) is a debilitating neurological disease of young people with substantial consequences on patients' quality of life (QOL). A variety of QOL instruments have been used to evaluate the efficacy of treatments. However, no study assessed the role of the different demographic, clinical, physical, social, economic and psychological parameters in the perception of patients with MS of their QOL. Two-hundred and one consecutive patients attending outpatient clinics were prospectively studied and objectively assessed using Expanded Disability Status Scale (EDSS), 8-m walk test, and Symbol Digit Modality Test. Patients completed the following questionnaires: MS QOL-54, Hamilton Depression Rating Scale, Fatigue Severity Scale, Brief Pain Inventory Average Pain Score, Drug Side-Effects Severity Scale, Social Support, Religiosity, Physiotherapy and Exercise, and Socioeconomic Profile. Overall, QOL, physical (PHCS) and mental (MHCS) health composite scores were computed as outcome measures from MSQOL-54. Depression, social support, religiosity, education years and living area predicted overall QOL by linear regression (R(2) = 0.43). Unemployment and absence of fatigue correlated with poor and good QOL, respectively. Fatigue, pain, depression, EDSS, social support, MS type and anti-cholinergic treatment predicted PHCS (R(2) = 0.81). Fatigue, pain, depression, education years and social support predicted MHCS (R(2) = 0.70). The QOL in patients with MS is not solely determined by physical disability, but rather by the level of social support, living area, depression, level of education, employment, fatigue and religiosity. Accordingly, we suggest that these should be evaluated in every patient with MS as they may be modified by targeted interventions. © 2013 The Author(s) European Journal of Neurology © 2013 EFNS.
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                Author and article information

                Journal
                Patient Prefer Adherence
                Patient Prefer Adherence
                Patient Preference and Adherence
                Patient preference and adherence
                Dove Medical Press
                1177-889X
                2016
                26 August 2016
                : 10
                : 1647-1656
                Affiliations
                [1 ]Department of Neurology, Specialist Hospital, Końskie
                [2 ]Depsartment of Neurology, Holy Spirit Specialist Hospital, Sandomierz
                [3 ]AGH University of Science and Technology, Krakow
                [4 ]Swietokrzyski Regional Branch of the Polish National Health Fund (NFZ), Kielce
                [5 ]First Department of Neurology, Institute of Psychiatry and Neurology, Warsaw
                [6 ]Department of Psychology, University of Szczecin, Szczecin, Poland
                Author notes
                Correspondence: Waldemar Brola, Department of Neurology, Specialist Hospital, ul Gimnazjalna 41B, 26-200 Konskie, Poland, Tel +48 60 131 3415, Fax +48 41 390 2364, Email wbrola@ 123456wp.pl
                Article
                ppa-10-1647
                10.2147/PPA.S109520
                5008638
                17629814
                e4cc5709-1f1a-4e8d-bfd5-9d98e3957082
                © 2016 Brola et al. This work is published and licensed by Dove Medical Press Limited

                The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.

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                Medicine
                multiple sclerosis,patient-reported outcomes,quality of life,poland
                Medicine
                multiple sclerosis, patient-reported outcomes, quality of life, poland

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