scholarly journals Quality of life among injectable and oral disease-modifying therapy users in the Pacific Northwest Multiple Sclerosis Registry

BMC Neurology ◽  
2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Tamela Stuchiner ◽  
Lindsay Lucas ◽  
Elizabeth Baraban ◽  
Kateri J. Spinelli ◽  
Chiayi Chen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Pacific Northwest ◽  
Oral Disease ◽  
Time Period ◽  
The Pacific ◽  
Disability Status ◽  
Disease Modifying ◽  
Paired T Test

Abstract Background Nine oral disease-modifying therapies (DMTs) have been approved for the treatment of multiple sclerosis (MS) in the United States. Few studies have examined self-reported quality of life (QoL) and functional status outcomes among patients who switch to oral medications from injectable MS therapies. This study compares self-reported QoL and disability status between participants switching from injectable to oral DMTs, to those who stay on injectable DMTs continuously for the same time period. Methods Longitudinal data were assessed from relapsing MS participants in the Pacific Northwest MS Registry completing a minimum of two surveys between 2012 and 2018 with a maximum of 36 months between surveys. Stayers were defined as those who remained on injectable DMTs continuously from Time 1 to Time 2; switchers were those who switched from injectable to either fingolimod, teriflunomide or dimethyl fumarate during the same time interval. Outcomes of interest were physical and psychological QoL, measured by the Multiple Sclerosis Impact Scale (MSIS-29), and disability, measured by the Patient Determined Disease Steps (PDDS). To analyze the effect of switching to oral DMT on outcomes at Time 2, a one-to-two propensity score matching (PSM) was used to match switchers to stayers. Outcomes at Time 2 were analyzed using paired t-test for QoL scores, and Stuart Maxwell test for PDDS as a categorical variable. Results Among 2385 participants who returned consecutive yearly surveys, 413 met the inclusion criteria for stayers and 66 for switchers. After one-to-two PSM, 124 stayers were matched to 62 switchers. Paired t-test showed no differences between switchers and stayers for physical (mean difference: − 0.41; [95% confidence interval CI: − 3.3-2.4]; p = 0.78) or psychological (mean difference: − 0.23; [95% CI, − 1.6- 1.1]; p = 0.74) QoL. Additionally, no differences were seen between switchers and stayers in self-reported disability status. Conclusions MS registry participants who switched to an oral DMT from injectable showed no significant differences in QoL or self-reported disability status compared to those remaining on injectable DMT continuously in the same time period.

scholarly journals The QOSMOS Study: Pharmacist-Led Multicentered Observational Study on Quality of Life in Multiple Sclerosis

2021 ◽  
Vol 13 (4) ◽  
pp. 682-694
Author(s):  
Vera Damuzzo ◽  
Laura Agnoletto ◽  
Roberta Rampazzo ◽  
Francesca Cammalleri ◽  
Luca Cancanelli ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Observational Study ◽  
Well Being ◽  
Oral Disease ◽  
Cross Sectional ◽  
Disease Modifying Drugs ◽  
Patient Reported ◽  
Disease Modifying

Health-related quality of life is frequently included in patient-reported outcomes aimed at evaluating the effectiveness of disease-modifying drugs for multiple sclerosis, but recent data about Italian patients are missing. A multicenter observational and cross-sectional study was performed by students of hospital pharmacy to update existing data on quality of life and to correlate it with the pharmacological and medical history of patients. Quality of life (QoL) was assessed using the MS-QoL54 questionnaire, and the pharmacist collected patients’ characteristics, medical and pharmacological history, and Expanded Disability Status Scale (EDSS). Three hundred and forty-nine patients with multiple sclerosis were recruited from 16 centers between May 2018 and June 2019 (median age = 44.1 years; 68.9% women). The composite indexes of physical and mental well-being showed direct correlation with each other (R = 0.826; p < 0.001), and EDSS disability was an independent negative predictor of both indexes (R2 = 35.08% p < 0.001 and R2 = 15.74% p < 0.001, respectively). A trend of association between Physical Health Composite Score and different classes of oral disease-modifying drugs (DMDs) was observed. Our study found a decrease in QoL correlated with teriflunomide, which deserves further investigation. This experience demonstrates that joint action between scientific society and students association can be successful in conducting a no-profit multicenter observational study in a real-world setting.

scholarly journals Quality of life for veterans with multiple sclerosis on disease-modifying agents: Relationship to disability

2006 ◽  
Vol 43 (1) ◽  
pp. 35 ◽  
Author(s):  
Joseph B. Guarnaccia ◽  
Mihaela Aslan ◽  
Theresa Z. OConnor ◽  
MaryAnn Hope ◽  
Lewis Kazis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Disease Modifying ◽  
Disease Modifying Agents

scholarly journals Prevalence of fatigue in patients with multiple sclerosis and its effect on the quality of life

2013 ◽  
Vol 04 (03) ◽  
pp. 278-282 ◽  
Author(s):  
Karthik Nagaraj ◽  
Arun B Taly ◽  
Anupam Gupta ◽  
Chandrajit Prasad ◽  
Rita Christopher
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
World Health ◽  
Fatigue Score ◽  
Duration Of Illness ◽  
Disability Status ◽  
Fatigue Severity ◽  
The Mean ◽  
Health Organization

ABSTRACTObjective: This prospective study was carried out to observe the prevalence of fatigue in patients with multiple sclerosis (MS) and its effect on quality-of-life (QoL). Study Design and Setting: Prospective observational study in a University Tertiary Research Hospital in India. Patients and Methods: A total of 31 patients (25 females) with definite MS according to McDonald ′s criteria presented in out-patient/admitted in the Department of Neurology (between February 2010 and December 2011) were included in the study. Disease severity was evaluated using the Kurtzke′s expanded disability status scale (EDSS). Fatigue was assessed using Krupp′s fatigue severity scale (FSS). QoL was assessed by the World Health Organization QoL-BREF questionnaire. Results: The mean age of patients was 30.1 ± 9.1 years. The mean age at first symptom was 25.23 ± 6.4 years. The mean number of relapses was 4.7 ± 3.6 in the patients. The mean duration of illness was 4.9 ± 4.4 years. The mean EDSS score was 3.5 ± 2.2. Mean fatigue score was 38.7 ± 18.5 (cut-off value 36 in FSS). The prevalence of fatigue in patients with MS was 58.1% (18/31). MS patients with fatigue were significantly more impaired (P < 0.05) on all QoL domains (i.e., physical, psychosocial, social, and environment) than MS patients without fatigue. Conclusion: Prevalence of fatigue was found to be high in the MS patients in the study. All four domains of QoL were significantly more impaired in the group with fatigue than in those without fatigue.

Sustained improvement in Expanded Disability Status Scale as a new efficacy measure of neurological change in multiple sclerosis: treatment effects with natalizumab in patients with relapsing multiple sclerosis

2011 ◽  
Vol 17 (8) ◽  
pp. 970-979 ◽  
Author(s):  
J Theodore Phillips ◽  
Gavin Giovannoni ◽  
Fred D Lublin ◽  
Paul W O’Connor ◽  
Chris H Polman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Studies ◽  
Treatment Effects ◽  
Cumulative Probability ◽  
Expanded Disability Status Scale ◽  
Sustained Improvement ◽  
Neurological Improvement ◽  
Disability Status

Background: Validated measures of sustained improvements in neurological function have not been established for multiple sclerosis (MS) clinical studies. Objective: To evaluate sustained Expanded Disability Status Scale (EDSS) change as a potential indicator of neurological improvement and as an outcome measure in MS clinical studies. Methods: Analyses were performed on patients ( n = 620) from the pivotal natalizumab study AFFIRM with baseline EDSS scores ≥2.0. Cumulative probabilities of neurological improvement, defined as a 1.0-point decrease in EDSS score sustained for ≥12 weeks, were estimated by Kaplan–Meier analysis. A Cox proportional hazards model identified associated baseline factors and examined treatment effects. Results: Sustained improvement (as well as sustained worsening) in neurological disability was seen in AFFIRM patients. Sustained EDSS changes correlated well with quality of life measurements (SF36 and VAS). Natalizumab increased the cumulative probability of improvement over 2 years by 69% versus placebo (HR = 1.69; 95% CI 1.16–2.45; p = 0.006). Sensitivity analyses showed consistent benefits of natalizumab with variations in improvement magnitude and duration, and baseline disease activity. Conclusion: These analyses demonstrate that sustained EDSS improvement is an additional measure that is sensitive to treatment effects over 2 years and correlates with quality of life. Further research is warranted to validate its use as an MS study clinical outcome.

scholarly journals Access to and Use of Clinical Services and Disease-Modifying Therapies by People with Progressive Multiple Sclerosis in the United Kingdom

2017 ◽  
Vol 19 (6) ◽  
pp. 275-282 ◽  
Author(s):  
Evan Campbell ◽  
Elaine H. Coulter ◽  
Paul Mattison ◽  
Angus McFadyen ◽  
Linda Miller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Progressive Multiple Sclerosis ◽  
Clinical Services ◽  
The United Kingdom ◽  
Disease Modifying Therapies ◽  
Disease Modifying ◽  
The Uk ◽  
Regular Review

Background: According to current UK guidelines, everyone with progressive multiple sclerosis (MS) should have access to an MS specialist, but levels of access and use of clinical services is unknown. We sought to investigate access to MS specialists and use of clinical services and disease-modifying therapies (DMTs) by people with progressive MS in the United Kingdom. Methods: A UK-wide online survey was conducted via the UK MS Register. The inclusion criteria were age 18 years or older, primary or secondary progressive MS, and a member of the UK MS Register. Participants were asked about access to MS specialists, recent clinical service use, receipt of regular review, and current and previous DMT use. Participant demographic data, quality of life, and disease impact measures were from the UK MS Register. Results: In total, 1298 individuals responded: 7% were currently taking a DMT, 23% had previously taken a DMT, and 95% reported access to an MS specialist. The most used practitioners were MS doctors/nurses (50%), general practitioners (45%), and physiotherapists (40%). Seventy-four percent of participants received a regular review, although 37% received theirs less often than annually. Current DMT use was associated with better quality of life, but past DMT use was associated with poorer quality of life and higher impact of disease. Conclusions: Access to and use of MS specialists was high. However, a gap in service provision was highlighted in both receipt and frequency of regular reviews.

scholarly journals Treatment with Interferon Beta-1b Improves Quality of Life in Multiple Sclerosis

1999 ◽  
Vol 26 (4) ◽  
pp. 276-282 ◽  
Author(s):  
G.P. Rice ◽  
J. Oger ◽  
P. Duquette ◽  
G.S. Francis ◽  
M. Bélanger ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Interferon Beta ◽  
Burden Of Illness ◽  
Short Form ◽  
Sf 36 ◽  
Disability Status ◽  
Illness Study ◽  
Historical Controls

Background:The Canadian Burden of Illness Study Group reported that the quality of life (QoL) of multiple sclerosis (MS) patients falls drastically, early in the disease. With disability progression, the physical functioning scales of the Short Form 36 (SF-36) showed further decreases in QoL. The objective of this study is to describe the QoL of MS patients treated with interferon beta-1b (IFNB-1b) and to compare it to the QoL observed in a group of patients who had not been treated with IFNB-1b.Methods:Treated patients were prospectively recruited and were seen at their regular visit to the MS clinic. They self-completed the SF-36 questionnaire and their QoL was described and retrospectively compared to that of historical controls.Results:When IFNB-1b treated patients were compared to historical control patients with the same relapsing forms of MS, the treated patients with an Expanded Disability Status Scale (EDSS) score lower than 3.0 had a significantly better QoL. This was significant for four of the eight SF-36 domains: Physical Function (+22%, p=0.0102), Role-Physical (+100%, p=0.0022), General Health (+27%, p=0.0070) and Social Function (+19%, p=0.0287). The average QoL difference was 8% in the EDSS 3.0-6.0 group and 10% in the EDSS >6 group.Conclusion:Patients with relapsing forms of MS treated with IFNB-1b have better QoL than patients who are not treated, especially those with an EDSS < 3.0.

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