scholarly journals PND52 Responsiveness of the Multiple Sclerosis International Quality of Life and Short Form-36 Questionnaires to Expanded Disability Status Scale Score Changes in Subjects with Multiple Sclerosis: Final 24-Month Results From An International Observational Study

2011 ◽  
Vol 14 (7) ◽  
pp. A327
Author(s):  
O. Fernandez ◽  
K. Baumstarck-Barrau ◽  
H. Butzkueven ◽  
P. Flachenecker ◽  
E. Idiman ◽  
...  
2010 ◽  
Vol 16 (5) ◽  
pp. 588-596 ◽  
Author(s):  
RA Bermel ◽  
B. Weinstock-Guttman ◽  
D. Bourdette ◽  
P. Foulds ◽  
X. You ◽  
...  

Disease-modifying drugs are initiated early and continued for years in patients with multiple sclerosis. Long-term tolerability and impact are not known. The objective of this study was to evaluate long-term tolerability of intramuscular interferon beta-1a and effects on disability and quality of life. Patients were evaluated an average of 15 years after randomization into a placebo-controlled, double-blind trial of intramuscular interferon beta-1a for relapsing multiple sclerosis. Patient-reported Expanded Disability Status Scale, the Short Form-36, a visual analog scale of self-care independence, and a living situation questionnaire were administered. Status was ascertained in 79% (136/172) of eligible patients. Analysis focused on 122 living patients. Despite open-label, non-standardized treatment after the 2-year clinical trial, 46% ( n= 56) of the patients remained on intramuscular interferon beta-1a. Expanded Disability Status Scale scores were correlated highly with Short Form-36 subcategories and visual analog scale scores. Patients currently using intramuscular interferon beta-1a had a significantly lower mean Expanded Disability Status Scale score ( p= 0.011), less progression to Expanded Disability Status Scale milestones, significantly better scores on the physical component of the Short Form-36 ( p< 0.0001), and reported better general health and greater independence. We conclude that patients continuing to use intramuscular interferon beta-1a had less disability and better quality of life compared with patients not currently using intramuscular interferon beta-1a 15 years after randomization into a clinical trial.


2011 ◽  
Vol 17 (8) ◽  
pp. 970-979 ◽  
Author(s):  
J Theodore Phillips ◽  
Gavin Giovannoni ◽  
Fred D Lublin ◽  
Paul W O’Connor ◽  
Chris H Polman ◽  
...  

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.


Author(s):  
G.P. Rice ◽  
J. Oger ◽  
P. Duquette ◽  
G.S. Francis ◽  
M. Bélanger ◽  
...  

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.


2015 ◽  
Vol 17 (6) ◽  
pp. 268-274 ◽  
Author(s):  
Fatemeh Moghaddam Tabrizi ◽  
Moloud Radfar

Background: Quality of life (QOL) is impaired in multiple sclerosis (MS) in part due to physical disability. MS-associated fatigue and poor sleep are common and treatable features of MS that affect QOL. We assessed the association between fatigue, sleep quality, and QOL in people with MS. Methods: Cross-sectional data were collected from 217 patients with MS. Health-related QOL (MS Quality of Life-54), fatigue (Fatigue Severity Scale [FSS]), and sleep quality (Pittsburgh Sleep Quality Inventory [PSQI]) were assessed. Expanded Disability Status Scale scores were also provided by a qualified neurologist. Results: The mean ± SD age of the 217 patients was 32.6 ± 8.6 years, and 79% were female. One hundred fifty-two patients (70.0%) were classified as poor sleepers based on PSQI scores; 122 (56.2%) had significant fatigue based on FSS results. The mean ± SE physical (PCS) and mental (MCS) health composite scores of the MSQOL-54 were 40.12 ± 1.27 and 43.81 ± 1.61, respectively. There was a strong statistically significant positive correlation between PCS scores and MCS (r = 0.58), FSS (r = 0.49), and PSQI (r = 0.52) scores. MCS scores were strongly correlated with FSS (r = 0.53) and PSQI (r = 0.35) scores. Age exhibited statistically significant negative correlations with PCS (r = −0.21) and MCS (r = −0.58) scores, and was statistically significantly correlated with FSS (r = 0.23) and PSQI (r = 0.21) scores. Expanded Disability Status Scale scores were strongly correlated with FSS scores. Conclusions: These findings support screening of fatigue severity and sleep quality and their effects on QOL.


2010 ◽  
Vol 8 (1) ◽  
pp. 55 ◽  
Author(s):  
Sabine Twork ◽  
Susanne Wiesmeth ◽  
Milena Spindler ◽  
Markus Wirtz ◽  
Sabine Schipper ◽  
...  

Author(s):  
Fraser Moore ◽  
Christina Wolfson ◽  
Lubo Alexandrov ◽  
Yves Lapierre

Background:Quality of life instruments provide information that traditional outcome measures used in studies of multiple sclerosis do not. It is unclear if longer, disease-specific instruments provide more useful information than shorter, more general instruments, or whether patients prefer one type to another.Methods:We conducted a cross-sectional study of quality of life in a multiple sclerosis clinic population using a mailed questionnaire that combined three different quality of life instruments; the SF-36, the Multiple Sclerosis Quality of Life Instrument-54, and the EuroQol EQ-5D. We assessed the feasability of using each instrument and patient preference for each, calculated correlation coefficients for the summary scores of each instrument and other measures of disease severity, and calculated odds ratios from proportional odds models comparing each instrument with the Expanded Disability Status Scale.Results:We did not find substantial differences between the three instruments. All were well-received by patients, and over 75% felt that the combination of the three instruments best assessed their quality of life. For each instrument there was substantial variability between patients with similar quality of life scores in terms of their disability (as assessed by the Expanded Disability Status Scale and their own perception of their disease severity and quality of life (on simple 1-10 scales).Conclusion:Quality of life instruments are easy to use and well-received by patients, regardless of their length. There do not appear to be clinically important differences between general and disease-specific instruments. Each instrument appears to measure something other than a patient’s disability or perception of their own disease severity or quality of life.


2021 ◽  
Vol 10 (23) ◽  
pp. 5607
Author(s):  
Silvia Cerea ◽  
Marta Ghisi ◽  
Marco Pitteri ◽  
Maddalena Guandalini ◽  
Lauren B. Strober ◽  
...  

The aim of the study is to investigate the impact of coping strategies on Health-Related Quality of Life (HRQoL) and physical disability assessed with the Expanded Disability Status Scale (EDSS) of people with multiple sclerosis (pwMS). PwMS were asked to focus on “MS diagnosis” as the core stressor. One hundred eight pwMS completed the Coping Responses Inventory-Adult form (CRI-Adult), the Multiple Sclerosis Quality of Life-29 (MSQoL-29), and the Depression Anxiety Stress Scale-21 (DASS-21). Multiple regression analyses (first block: EDSS, disease duration, and DASS-21) revealed that physical MSQoL-29 was positively associated with Alternative Rewards and negatively with Resigned Acceptance of the CRI-Adult. The mental MSQoL-29 was positively associated with Problem-Solving and negatively with Emotional Discharge. The Expanded Disability Status Scale (EDSS; first block: disease duration and general distress) was negatively associated with Positive Reappraisal. The Analysis of covariance (ANCOVA) revealed that pwMS with lower physical disability showed higher scores in Positive Reappraisal and lower scores in Emotional Discharge than pwMS with a higher physical disability. Coping strategies can play a role on HRQoL and physical disability in pwMS above and beyond EDSS, disease duration, and general distress. Psychological interventions should be considered in pwMS since the time of diagnosis to promote engagement in adaptive coping strategies and contrast the maladaptive ones.


2014 ◽  
Vol 21 (11) ◽  
pp. 1468-1472 ◽  
Author(s):  
Eduardo Fernández-Jiménez ◽  
Peter A. Arnett

Background: Determining the relative importance of factors that predict quality of life (QoL) in people with multiple sclerosis (MS) must be addressed through multiple regression metrics, e.g. relative weights, which are designed to solve colinearity problems. Objective: We aimed to compare disease variables, Expanded Disability Status Scale (EDSS), depressive symptomatology (BDI-FS), cognitive performance and coping in predicting MS patients’ QoL, using relative weights. Methods: We assessed 97 patients with MS, using the Functional Assessment of MS (FAMS) as the criterion. Results: EDSS predicted global and physical QoL domains, whereas BDI-FS predicted general contentment and global QoL. Conclusion: EDSS and BDI-FS are relevant determinants of QoL in people with MS.


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