scholarly journals Symptomatic Management of Multiple Sclerosis–Associated Tremor Among Participants in the NARCOMS Registry

2016 ◽  
Vol 18 (3) ◽  
pp. 147-153 ◽  
Author(s):  
William Meador ◽  
Amber R. Salter ◽  
John R. Rinker
Keyword(s):  
Multiple Sclerosis ◽  
Medication Use ◽  
Symptomatic Treatment ◽  
Response To Treatment ◽  
Research Committee ◽  
The North ◽  
Drug Classes ◽  
Symptomatic Medication ◽  
Severity Scores ◽  
Patient Reported

Background: Tremor affects 25% to 58% of patients with multiple sclerosis (MS) and is associated with poor prognosis and increased disability. MS-related tremor is difficult to treat, and data regarding patient-reported characterization and response to treatment are limited. We describe the symptomatic treatment of tremor in 508 enrollees in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry who self-reported tremor. Methods: From 777 surveys sent to NARCOMS participants who indicated mild or greater tremor using the Tremor and Coordination Scale, we compiled data regarding disability, tremor severity, symptomatic medication use, and reported response to medications. Results: Symptomatic medications reported to reduce tremor were used by 238 respondents (46.9%). Symptomatic medication use was associated with increased rates of unemployment and disability, and many other characteristics were similar between groups. Symptomatic drug use was more likely in participants reporting moderate (53.9%) or severe (51.3%) tremor than in those with mild (36.6%) or totally disabling (35.0%) tremor. This disparity held true across multiple tremor severity scores. The most commonly used drug classes were anticonvulsants (50.8%) and benzodiazepines (46.2%), with gabapentin and clonazepam used most often in their respective classes. Conclusions: Tremor in MS remains poorly treated; less than half of the participants reported benefit from symptomatic medications. Patients with moderate-to-severe tremor are more likely to report tremor benefit than are those with mild or disabling tremor. γ-Aminobutyric acid–active medications were most commonly reported as beneficial.

scholarly journals Treatment Discontinuation and Disease Progression with Injectable Disease-Modifying Therapies

2013 ◽  
Vol 15 (4) ◽  
pp. 194-201 ◽  
Author(s):  
Robert J. Fox ◽  
Amber R. Salter ◽  
Tuula Tyry ◽  
Jennifer Sun ◽  
Xiaojun You ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Disease Progression ◽  
Clinical Decision Making ◽  
Medication Compliance ◽  
Clinical Decision ◽  
Research Committee ◽  
The North ◽  
Disease Modifying Therapies ◽  
Patient Reported ◽  
Disease Modifying

Injectable first-line disease-modifying therapies (DMTs) for multiple sclerosis (MS) are generally prescribed for continuous use. Accordingly, the various factors that influence patient persistence with treatment and that can lead some patients to switch medications or discontinue treatment may affect clinical outcomes. Using data from the North American Research Committee on Multiple Sclerosis (NARCOMS) database, this study evaluated participants' reasons for discontinuation of injectable DMTs as well as the relationship between staying on therapy and sustained patient-reported disease progression and annualized relapse rates. Participants selected their reason(s) for discontinuation from among 16 possible options covering the categories of efficacy, safety, tolerability, and burden, with multiple responses permitted. Both unadjusted data and data adjusted for baseline age, disease duration, disability, and sex were evaluated. Discontinuation profiles varied among DMTs. Participants on intramuscular interferon beta-1a (IM IFNβ-1a) and glatiramer acetate (GA) reported the fewest discontinuations based on safety concerns, although GA was associated with reports of higher burden and lower efficacy than other therapies. Difficulties with tolerability were more often reported as a reason for discontinuing subcutaneous (SC) IFNβ-1a than as a reason for discontinuing IM IFNβ-1a, GA, or SC IFNβ-1b. In the persistent therapy cohort, less patient-reported disability progression was reported with IM IFNβ-1a treatment than with SC IFNβ-1a, IFNβ-1b, or GA. These findings have relevance to clinical decision making and medication compliance in MS patient care.

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.

scholarly journals Disease-modifying therapy prescription patterns in people with multiple sclerosis by age

2021 ◽  
Vol 14 ◽  
pp. 175628642110064
Author(s):  
Yinan Zhang ◽  
Amber Salter ◽  
Shan Jin ◽  
William J. Culpepper ◽  
Gary R. Cutter ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Disease Activity ◽  
Age Groups ◽  
The Elderly ◽  
Department Of Veterans Affairs ◽  
Real World Data ◽  
Research Committee ◽  
The North ◽  
Disease Modifying ◽  
Magnetic Resonance Imaging Mri

Background: Disease-modifying therapies (DMTs) for multiple sclerosis (MS) are approved for their ability to reduce disease activity, namely clinical relapses and signal changes on magnetic resonance imaging (MRI). Disease activity appears age dependent. Thus, the greatest benefit would be expected in younger people with MS (PwMS) whereas benefits in the elderly are uncertain. Methods: Real-world data were obtained from PwMS from the North American Research Committee on Multiple Sclerosis (NARCOMS) registry and the US Department of Veterans Affairs Multiple Sclerosis Surveillance Registry (MSSR). Results: 6948 PwMS were surveyed from NARCOMS, and the MSSR had 1719 participants. In younger adult PwMS 40-years old or less, 183 (61.4%) in NARCOMS and 179 (70.5%) in the MSSR were prescribed DMTs. Among PwMS over age 60, 1575 (40.1%) in NARCOMS and 239 (36.3%) in the MSSR were prescribed DMTs. More PwMS in the age group of 31–40 ( p = 0.035) and 41–50 ( p = 0.001) in the MSSR were using DMTs compared with PwMS of the same age groups in NARCOMS. Conclusion: These findings suggest that DMTs are under-utilized in the younger population and continue to be commonly prescribed in the elderly. Broader access may explain the higher prescription rate of DMTs in US veterans.

Validation of the NARCOMS Registry: pain assessment

2005 ◽  
Vol 11 (3) ◽  
pp. 338-342 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry ◽  
Olympia Hadjimichael ◽  
Timothy Vollmer
Keyword(s):  
Multiple Sclerosis ◽  
Convergent Validity ◽  
Disease Duration ◽  
Self Report ◽  
Research Committee ◽  
Retest Reliability ◽  
The North ◽  
Disability Status ◽  
Pain Question ◽  
Test Retest Reliability

The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is a multiple sclerosis (MS) self-report registry with more than 24 000 participants. Participants report disability status upon enrolment, and semi-annually using Performance Scales (PS), Patient Determined Disease Steps (PDDS) and a pain question. In November 2000 and 2001, we also collected the Pain Effects Scale (PES). Our aim was to validate the NARCOMS pain question using the PES as our criterion measure. We measured correlations between the pain question and age, disease duration, various PS subscales and PDDS to assess construct validity. We correlated pain question responses in participants who reported no change in PDSS or the PS subscales between questionnaires to determine test—retest reliability. We measured responsiveness in participants who reported a substantial change in the sensory, spasticity PS subscales. The correlation between the pain question and PES was r=0.61 in November 2000, and r=0.64 in November 2001 (both P<0.0001). Correlations between the pain question and age, and disease duration were low, indicating divergent validity. Correlations between the pain question and spasticity, sensory PS subscales and PDSS were moderate, indicating convergent validity. Test—retest reliability was r=0.84 (P<0.0001). Responsiveness was 70.7%. The pain question is a valid self-report measure of pain in MS.

scholarly journals Developing a crosswalk between the RAND-12 and the health utilities index for multiple sclerosis

2019 ◽  
Vol 26 (9) ◽  
pp. 1102-1110 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Brenden Dufault ◽  
Tuula Tyry ◽  
Gary R Cutter ◽  
Robert J Fox ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Intraclass Correlation ◽  
Correlation Coefficients ◽  
Health Utilities Index ◽  
Research Committee ◽  
Health Utilities ◽  
The North ◽  
Many Instruments ◽  
Related Quality ◽  
Health Related

Background: Researchers studying health-related quality of life (HRQOL) in multiple sclerosis (MS) can choose from many instruments, but findings from studies which use different instruments cannot be easily combined. We aimed to develop a crosswalk that associates scores from the RAND-12 to scores on the Health Utilities Index—Mark III (HUI3) in persons with MS. Methods: In 2018, participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) registry completed the RAND-12 and the HUI3 to assess HRQOL. We used item-response theory (IRT) and equipercentile linking approaches to develop a crosswalk between instruments. We compared predicted scores for the HUI3 from each crosswalk to observed scores using Pearson correlations, intraclass correlation coefficients (ICCs), and Bland–Altman plots. Results: Of 11,389 invited participants, 7129 (62.6%) responded. Predicted and observed values of the HUI3 from the IRT-linking method were moderately correlated (Pearson r = 0.76) with good concordance (ICC = 0.72). However, the Bland–Altman plots suggested biased prediction. Predicted and observed values from the equipercentile linking method were also moderately correlated (Pearson r = 0.78, ICC = 0.78). The Bland–Altman plots suggested no bias. Conclusion: We developed a crosswalk between the RAND-12 and the HUI3 in the MS population which will facilitate data harmonization efforts.

The burden of mental comorbidity in multiple sclerosis: frequent, underdiagnosed, and undertreated

2009 ◽  
Vol 15 (3) ◽  
pp. 385-392 ◽  
Author(s):  
RA Marrie ◽  
R Horwitz ◽  
G Cutter ◽  
T Tyry ◽  
D Campagnolo ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Socioeconomic Status ◽  
Depression Scale ◽  
Epidemiologic Studies ◽  
Lower Socioeconomic Status ◽  
Research Committee ◽  
The North ◽  
Lower Socioeconomic ◽  
Mental Comorbidities ◽  
Mental Comorbidity

Background Mental comorbidity is common in multiple sclerosis (MS), but some studies suggest that mental comorbidity may be underrecognized and undertreated. Objective Using the North American Research Committee on MS Registry, we assessed the frequency of mental comorbidities in MS and sociodemographic characteristics associated with diagnosis and treatment of depression. Methods We queried participants regarding depression, anxiety, bipolar disorder, and schizophrenia. Depressive symptoms were assessed using the Center for Epidemiologic Studies Depression Scale (CESD); a score ≥21 indicated probable major depression. Results Mental comorbidity affected 4264 (48%) responders; depression most frequently (4012, 46%). Among participants not reporting mental comorbidity, 751 (16.2%) had CESD scores ≥21 suggesting undiagnosed depression. Lower socioeconomic status was associated with increased odds of depression (Income $15,000–30,000 vs >$100,000 OR 1.34; 1.11–1.62), undiagnosed depression (Income $15,000–30,000 vs >$100,000 OR 1.52; 1.08–2.13), and untreated depression (<high school vs postgraduate degree OR 3.13; 1.65–5.99). Conclusions Mental comorbidity remains underdiagnosed and undertreated in MS. Patients of lower socioeconomic status bear a disproportionate share of the burden of depression.

scholarly journals Trigeminal Neuralgia Commonly Precedes the Diagnosis of Multiple Sclerosis

2017 ◽  
Vol 19 (5) ◽  
pp. 240-246 ◽  
Author(s):  
Ahmad Fallata ◽  
Amber Salter ◽  
Tuula Tyry ◽  
Gary R. Cutter ◽  
Ruth Ann Marrie
Keyword(s):  
Multiple Sclerosis ◽  
Trigeminal Neuralgia ◽  
Disease Duration ◽  
Epidemiological Studies ◽  
Descriptive Statistics ◽  
Research Committee ◽  
Surgical Interventions ◽  
The North ◽  
The Mean ◽  
Pharmacologic Treatments

Background: Trigeminal neuralgia (TN) is a well-recognized cause of facial pain in the general population, and multiple sclerosis (MS) accounts for some of these cases. However, the prevalence of TN in MS is poorly understood. We investigated the prevalence of TN and how often TN is the initial presentation of MS in a large MS cohort. Methods: In 2009, we surveyed participants in the North America Research Committee on Multiple Sclerosis Registry regarding TN, including date of onset and pharmacologic and nonpharmacologic treatments used. We estimated the frequency of TN and the frequency with which TN preceded the diagnosis of MS. We compared the demographic and clinical characteristics of participants who reported TN with those of participants who did not using descriptive statistics and logistic regression. Results: Among 8590 eligible survey respondents, the prevalence of TN was 830 (9.7%). Of these respondents, 588 reported the year when TN was diagnosed. The diagnosis of TN preceded that of MS in 88 respondents (15.0%), and the mean ± SD age at diagnosis of TN was 45.3 ± 11.0 years. The odds of reporting TN were higher in women and those with greater disability and longer disease duration. Pharmacologic treatments were used by 88.3% of respondents; 9.7% underwent surgical interventions. Conclusions: In MS, TN occurs frequently and precedes the diagnosis of MS in 15.0% of individuals. Given the frequency of TN in MS, further epidemiological studies and clinical trials to identify effective pharmacologic and nonpharmacologic therapies for TN in MS are warranted.

scholarly journals A survey of risk tolerance to multiple sclerosis therapies

Neurology ◽  
2019 ◽  
Vol 92 (14) ◽  
pp. e1634-e1642 ◽  
Author(s):  
Robert J. Fox ◽  
Carol Cosenza ◽  
Lauren Cripps ◽  
Paul Ford ◽  
MaryBeth Mercer ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Kidney Injury ◽  
Risk Tolerance ◽  
Research Committee ◽  
Risk Scenarios ◽  
The North ◽  
Disease Modifying Therapy ◽  
Multiple Risks ◽  
Wide Range ◽  
National Multiple Sclerosis Society

ObjectiveTo determine tolerance to various risk scenarios associated with current multiple sclerosis (MS) therapies.MethodsPeople with MS from the North American Research Committee on Multiple Sclerosis Registry's online cohort and the National Multiple Sclerosis Society were invited to complete a questionnaire on tolerance to real-world risks associated with a hypothetical therapy. Multiple risks levels were presented, including skin rash, infection, kidney injury, thyroid injury, liver injury, and progressive multifocal leukoencephalopathy (PML).ResultsBoth PML and kidney injury had the lowest risk tolerance (RT) at 1:1,000,000, and thyroid and infection risks had the highest tolerance at 1:1,000. Men, younger individuals, and participants with greater disability reported a higher tolerance to all risk scenarios. Those who were currently taking an MS therapy reported higher tolerance than those not taking any therapy. Participants taking infusion therapies reported high tolerance to all risks, and those taking injectables reported a lower tolerance.ConclusionPeople with MS displayed a wide range of RT for MS therapies. Our study identified sex, age, disability, and current disease-modifying therapy use to be associated with RT.

Substantial adverse association of visual and vascular comorbidities on visual disability in multiple sclerosis

2011 ◽  
Vol 17 (12) ◽  
pp. 1464-1471 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry
Keyword(s):  
Multiple Sclerosis ◽  
Cox Regression ◽  
Cox Model ◽  
Contributing Factors ◽  
Visual Disability ◽  
Research Committee ◽  
The North ◽  
American Research ◽  
The Impact ◽  
Vascular Comorbidity

Background: Visual comorbidities are common in multiple sclerosis (MS) but the impact of visual comorbidities on visual disability is unknown. Objective: We assessed the impact of visual and vascular comorbidities on severity of visual disability in MS. Methods: In 2006, we queried participants of the North American Research Committee on Multiple Sclerosis (NARCOMS) about cataracts, glaucoma, uveitis, hypertension, hypercholesterolemia, heart disease, diabetes and peripheral vascular disease. We assessed visual disability using the Vision subscale of Performance Scales. Using Cox regression, we investigated whether visual or vascular comorbidities affected the time between MS symptom onset and the development of mild, moderate and severe visual disability. Results: Of 8983 respondents, 1415 (15.9%) reported a visual comorbidity while 4745 (52.8%) reported a vascular comorbidity. The median (interquartile range) visual score was 1 (0–2). In a multivariable Cox model the risk of mild visual disability was higher among participants with vascular (hazard ratio [HR] 1.45; 95% confidence interval [CI]: 1.39–1.51) and visual comorbidities (HR 1.47; 95% CI: 1.37–1.59). Vascular and visual comorbidities were similarly associated with increased risks of moderate and severe visual disability. Conclusions: Visual and vascular comorbidities are associated with progression of visual disability in MS. Clinicians hearing reports of worsening visual symptoms in MS patients should consider visual comorbidities as contributing factors. Further study of these issues using objective, systematic neuro-ophthalmologic evaluations is warranted.

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