scholarly journals Objective and subjective measures of dalfampridine efficacy in clinical practice

2018 ◽  
Vol 4 (3) ◽  
pp. 205521731878674
Author(s):  
Sylvia Klineova ◽  
Rebecca Farber ◽  
Joshua Friedman ◽  
Colleen Farrell ◽  
Fred D Lublin ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Medical Records ◽  
Chart Review ◽  
Therapeutic Response ◽  
Walking Ability ◽  
Median Score ◽  
Subjective Measures ◽  
Patient Reported ◽  
Patient Reported Measures

Background Multiple sclerosis affects mobility in over 80% of patients. Dalfampridine is the only approved treatment for walking impairment in multiple sclerosis. We assessed dalfampridine utilization in our practice and investigated response using timed 25 foot walk (T25FW) improvement and a patient-reported ambulation inventory. Methods Chart review identified patients with multiple sclerosis for whom dalfampridine was prescribed. T25FW data were extracted from medical records. Participants completed a dalfampridine-specific version of the multiple sclerosis walking scale (dMSWS-12) to assess the qualitative impact of dalfampridine on ambulation. We evaluated two responder categories: liberally defined as any improvement in T25FW; and over 20% T25FW improvement. Results The dMSWS-12 questionnaire was completed by 39 patients. Eighteen patients (46%) did not show any T25FW improvement. Of the 21 patients (54%) with T25FW improvement, four patients (11%) showed improvement greater than 20%. Analysis of dMSWS-12 scores showed a median score of 40 (range 12–60). Eleven patients (28%) showed no improvement (dMSWS-12 score ≤36). In contrast to objective T25FW improvement (54%), 28 patients (72%) reported improvement in walking ability (dMSWS-12 score ≥37). Conclusion Our results suggest that T25FW alone might not be sufficient for response characterization and that adding patient-reported measures may further elucidate the therapeutic response.

scholarly journals Effect of tobacco use on disease activity and DMT discontinuation in multiple sclerosis patients treated with dimethyl fumarate or fingolimod

2020 ◽  
Vol 6 (4) ◽  
pp. 205521732095981
Author(s):  
Carrie M Hersh ◽  
Haleigh Harris ◽  
Malissa Ayers ◽  
Devon Conway
Keyword(s):  
Multiple Sclerosis ◽  
Risk Factor ◽  
Clinical Practice ◽  
Disease Activity ◽  
Tobacco Use ◽  
Dimethyl Fumarate ◽  
Tobacco Exposure ◽  
Disease Modifying Therapy ◽  
Patient Reported ◽  
Multiple Sclerosis Patients

Background Tobacco exposure is a modifiable risk factor for multiple sclerosis (MS). Studies evaluating the relationship between tobacco, disease activity, and disease modifying therapy (DMT) persistence yielded conflicting results. We sought to address this issue with data from clinical practice. Objective To compare 24-month disease outcomes in tobacco versus non-tobacco users treated with dimethyl fumarate (DMF) or fingolimod (FTY) in clinical practice. Methods We retrospectively identified 659 MS patients treated with DMF or FTY, stratified by patient-reported tobacco use. DMT discontinuation and measures of disease activity at 24 months were assessed using propensity score (PS) weighting. Outcome estimates were calculated as tobacco vs non-tobacco use. Results 164 tobacco users (DMF n = 101; FTY n = 63) and 495 non-tobacco users (DMF n = 294; FTY n = 201) were identified. Tobacco (39.4%) and non-tobacco (34.4%) users were equally likely to discontinue DMT (OR = 1.17, 95% CI 0.79, 1.75), but tobacco users discontinued therapy earlier (HR = 1.53, 95% CI 1.06, 2.43). There were no differences in ARR (rate ratio = 1.39, 95% CI 0.97, 1.96). However, tobacco users had decreased odds of NEDA-2 (OR = 0.61, 95% CI 0.44, 0.83). Conclusion Our findings suggest that tobacco is a negative risk factor for inflammatory disease activity and earlier DMF and FTY discontinuation.

Do patient and proxy agree? Long-term changes in multiple sclerosis physical impact and walking ability on patient-reported outcome scales

2014 ◽  
Vol 20 (12) ◽  
pp. 1616-1623 ◽  
Author(s):  
Judith M Sonder ◽  
Lisanne J Balk ◽  
Libertje VAE Bosma ◽  
Chris H Polman ◽  
Bernard MJ Uitdehaag
Keyword(s):  
Multiple Sclerosis ◽  
Patient Reported Outcome ◽  
Study Data ◽  
Walking Ability ◽  
Impact Scale ◽  
Patient Reported ◽  
Proxy Responses ◽  
Physical Impact ◽  
The Impact

Background: Patient-reported outcome scales (PROs) are useful in monitoring changes in multiple sclerosis (MS) over time. Although these scales are reliable and valid measures in longitudinal studies in MS patients, it is unknown what the impact is when obtaining longitudinal data from proxies. Objective: The objective of this paper is to compare longitudinal changes in patient and proxy responses on PROs assessing physical impact of MS and walking ability. Methods: In a prospective observational study, data on the Multiple Sclerosis Impact Scale (MSIS-29 physical) and Multiple Sclerosis Walking Scale (MSWS-12) were obtained from 137 patient-proxy couples at baseline and at two-year follow-up. Demographic and disease-related variables explaining agreement or disagreement between patients and proxies were investigated using linear regression analyses. Results: Full agreement was found in 56% (MSIS) and 62% (MSWS) of the patient-proxy couples. Complete disagreement was very rare for both scales (2% MSIS, 5% MSWS). When patients were more positive than proxies, a higher age, longer disease duration, longer patient-proxy relationship and increased levels of depression, anxiety and caregiver burden in proxies were observed. Conclusion: In the majority of the patient-proxy couples there was agreement. Proxies can serve as a valuable source of information, but caution remains essential when using scores from proxies.

A Novel Electronic Application of Patient-reported Outcomes in Multiple Sclerosis – Meeting the Necessary Challenge of Assessing Quality of Life and Outcomes in Daily Clinical Practice

2014 ◽  
Vol 9 (1) ◽  
pp. 49 ◽  
Author(s):  
Simon Exell ◽  
Mark Thristan ◽  
Fernando Dangond ◽  
Kurt Marhardt ◽  
Meaghan St Charles Krohe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Negative Impact ◽  
Patient Reported Outcome ◽  
Software Application ◽  
Wireless Data Transmission ◽  
Patient Reported ◽  
Auto Injector

Multiple sclerosis (MS) has a substantial negative impact on health-related quality of life. Clinical assessments often do not include standardised, routine assessment of MS impact from the patient perspective, and communication between healthcare practitioners (HCPs) and patients can be lacking. Thus, there is a need for patient-reported outcome (PRO) measures to encourage patient–HCP communication, to help inform HCPs of matters important to patients and to aid both patients and HCPs in managing the disease. MSdialog is a web- and mobile-based software application that works with auto-injector devices and electronic autoinjectors, including the RebiSmart® 2.0 device (a handheld electronic Rebif® auto-injector with wireless data transmission capabilities, CE marked and available worldwide [excluding the US]) to collect and store real-time, point-of-administration adherence, clinician-reported outcomes and PRO data. MSdialog may provide a practical solution to support patient-proactive engagements and self-management, patient-centred care and participatory decision-making in clinical practice.

Improving Ambulation in Multiple Sclerosis

US Neurology ◽  
2009 ◽  
Vol 05 (01) ◽  
pp. 50
Author(s):  
Francois Bethoux ◽  
Keyword(s):  
Multiple Sclerosis ◽  
Walking Speed ◽  
Outcome Measurement ◽  
Daily Activities ◽  
Walking Distance ◽  
Patient Reported ◽  
Walking Performance ◽  
Patient Reported Measures ◽  
The Impact

Ambulation is frequently affected by multiple sclerosis (MS), and is one of the most valued neurological functions among individuals with MS. While walking speed and walking distance have been used for decades as indicators of disease progression, other aspects of gait disturbance are not routinely assessed, and the impact of walking limitations on the daily activities and quality of life of patients is not fully understood. Recently, rehabilitation techniques, devices, and medications that aim directly at improving walking performance have been tested in individuals with MS. At the same time, clinician-rated and patient-reported measures of ambulation are being validated in this patient population. As a consequence of these advances, clinicians can draw from a growing body of evidence to enhance decision-making and outcome measurement when trying to help MS patients fight one of the most visible consequences of their disease.

Cognitive and patient-reported outcomes in adults with pediatric-onset multiple sclerosis

2015 ◽  
Vol 22 (3) ◽  
pp. 354-361 ◽  
Author(s):  
Natalie F Baruch ◽  
Ellen H O’Donnell ◽  
Bonnie I Glanz ◽  
Ralph HB Benedict ◽  
Alexander J Musallam ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Patient Reported Outcomes ◽  
Disease Duration ◽  
Age Of Onset ◽  
Information Processing Speed ◽  
Patient Reported ◽  
Related Quality ◽  
Using Data ◽  
Patient Reported Measures ◽  
Pediatric Onset

Background: Little is known about long-term cognitive and patient-reported outcomes of pediatric-onset multiple sclerosis (POMS). Objective: The objective of this paper is to compare cognitive and patient-reported outcomes in adults with POMS vs. adult-onset MS (AOMS). Methods: We compared standardized patient-reported measures MSQOL54, MFIS, CES-D and SDMT in adult patients with MS onset prior to and after age 18, using data gathered in the Comprehensive Longitudinal Investigations in MS at Brigham and Women’s Hospital (CLIMB) study. Results: Fifty-one POMS and 550 AOMS patients were compared. SDMT scores were significantly lower in POMS after adjusting for age (−7.57 (−11.72, −3.43; p < 0.001), but not after adjusting for disease duration. Estimated group difference demonstrated lower normative z scores in POMS vs. AOMS in unadjusted analysis (−0.74 (95% CI: −1.18, −0.30; p = 0.0009) and after adjusting for disease duration (−0.60; 95%CI: −1.05, −0.15; p = 0.0097). Findings were unchanged in a subset of POMS diagnosed prior to age 18. In unadjusted and adjusted analyses, no significant differences were observed in health-related quality-of-life, fatigue, depression or social support between POMS and AOMS. Conclusions: Younger age of onset was associated with more impairment in information-processing speed in adults with POMS compared to AOMS, and remained significant when controlling for disease duration in age-normed analysis. The two groups were similar in terms of patient-reported outcomes, suggesting similar qualitative experiences of MS.

Pregnancy in multiple sclerosis patients treated with immunomodulators prior to or during part of the pregnancy: a descriptive study in the Spanish population

2007 ◽  
Vol 13 (8) ◽  
pp. 981-984 ◽  
Author(s):  
V. De las Heras ◽  
C. De Andrés ◽  
N. Téllez ◽  
M. Tintoré ◽  
Keyword(s):  
Multiple Sclerosis ◽  
Clinical Practice ◽  
Relapse Rate ◽  
Pregnancy Outcomes ◽  
Medical Records ◽  
Clinical Course ◽  
Post Partum ◽  
Accidental Exposure ◽  
Multicentric Study ◽  
Multiple Sclerosis Patients

Objectives To study the management of pregnancy in multiple sclerosis (MS) patients on immunomodulatory therapy (IMT) in routine clinical practice and to analyze pregnancy outcomes and the clinical course of MS around pregnancy. Methods Retrospective, multicentric study in Spain in MS patients receiving IMT before conception and followed for at least three months post-partum. Results A total of 1286 medical records were reviewed. Eighty-eight pregnancies were identified in 74 (6%) women, 66% of which were unexposed and 34% exposed pregnancies. In most cases, IMT was discontinued before conception and resumed shortly after delivery. Accidental exposure to IMT did not lead to higher rates of abortions ( P = 0.76) or malformations. The relapse rate was decreased during pregnancy (0.31 versus 0.61 in the pre-pregnancy year) and increased after delivery (0.87 on month 3), returning to pre-conception values on month 12. The median EDSS score was not increased during the study. Conclusions Discontinuation of IMT before conception, and resumption shortly after delivery was the most frequent clinical practice procedure. Accidental exposure to IMT did not affect pregnancy outcomes or increased malformation rates. Pregnancy was associated with a reduced relapse rate. No factor was found to predict the risk of relapses during or after pregnancy. Multiple Sclerosis 2007; 13: 981—984. http://msj.sagepub.com

scholarly journals Validation of the NARCOMS Registry

2011 ◽  
Vol 13 (3) ◽  
pp. 114-120 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Myla Goldman
Keyword(s):  
Multiple Sclerosis ◽  
Construct Validity ◽  
Short Form ◽  
Hand Function ◽  
Functional System ◽  
Research Committee ◽  
The North ◽  
Patient Reported ◽  
And Performance ◽  
Patient Reported Measures

Tremor secondary to multiple sclerosis (MS) can be severely disabling but remains understudied. The development of brief, acceptable patient-reported measures of tremor could facilitate further study. We aimed to assess the criterion and construct validity of the Tremor and Coordination Scale (TACS) used by the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Forty-four patients with MS completed the TACS and Performance Scales and underwent a neurologic examination (Expanded Disability Status Scale; EDSS) and evaluation with the Multiple Sclerosis Functional Composite (MSFC). We assessed criterion and construct validity with Spearman rank correlations between the TACS and the following measures: EDSS, Nine-Hole Peg Test (NHPT) of the MSFC, age, body-mass index (BMI), the hand function and mobility domains of the Performance Scales, and the Physical and Mental Composite Scores of the 36-item Short Form Health Status Survey (SF-36). The median (interquartile range; IQR) score on the TACS was 1 (0.5–2.0). The TACS correlated moderately with the cerebellar Functional System Score (FSS) (r = 0.51; 95% confidence interval [CI], 0.24–0.70) and with the NHPT (r = −0.51; 95% CI, −0.70 to −0.29). The TACS correlated with the hand (r = 0.60; 95% CI, 0.36–0.76) and mobility (r = 0.56; 95% CI, 0.31–0.73) domains of the Performance Scales. The TACS did not correlate significantly with age (r = −0.11; 95% CI, −0.40 to 0.19) or BMI (r = 0.15; 95% CI, −0.15 to 0.43). These findings support the criterion and construct validity of the TACS. Further evaluation is needed to establish the test-retest reliability of the scale and its responsiveness to change.

Sign in / Sign up

Export Citation Format

Share Document