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.

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 Natural History of Multiple Sclerosis Symptoms

2013 ◽  
Vol 15 (3) ◽  
pp. 146-156 ◽  
Author(s):  
Ilya Kister ◽  
Tamar E. Bacon ◽  
Eric Chamot ◽  
Amber R. Salter ◽  
Gary R. Cutter ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Disease Duration ◽  
Hand Function ◽  
Unmet Need ◽  
Bladder Function ◽  
Research Committee ◽  
Domain Specific ◽  
The North ◽  
Symptomatic Management ◽  
Symptom Prevalence

The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is a database that contains information from over 35,000 patient volunteers on symptom severity in 11 domains commonly affected in multiple sclerosis (MS): mobility, hand function, vision, fatigue, cognition, bowel/bladder function, sensory, spasticity, pain, depression, and tremor/coordination. The Registry affords a unique opportunity to study the frequency and severity of domain-specific impairment in a contemporary, mostly treated MS cohort over the course of the disease. The objective of this work was to calculate symptom prevalence in each of the 11 domains for years 0 to 30 from symptom onset. The resulting “symptom prevalence tables” demonstrate that a majority of participants perceive at least some degree of impairment in most domains as early as the first year of disease. The severity of impairment increases with disease duration across all domains, but the patterns of disability accumulation differ. The symptom prevalence tables illustrate the magnitude of perceived impact of the disease and highlight the extent of unmet need in symptomatic management. The tables are easy to use and allow MS patients and their clinicians to compare an individual's own impairment in any of the 11 domains to that of NARCOMS participants with the same disease duration.

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.

Increasing incidence of multiple sclerosis in women in Northern Finland

2010 ◽  
Vol 17 (2) ◽  
pp. 133-138 ◽  
Author(s):  
O Krökki ◽  
R Bloigu ◽  
M Reunanen ◽  
AM Remes
Keyword(s):  
Multiple Sclerosis ◽  
Geographical Location ◽  
Epidemiological Studies ◽  
The Arctic ◽  
Time Intervals ◽  
The Past ◽  
Mcdonald Criteria ◽  
Epidemiological Features ◽  
High Prevalence ◽  
The Mean

Background: The geographical distribution of multiple sclerosis (MS) means that prevalence rates increase with latitude north or south of the equator. Temporally, a tendency for increased incidences of MS has been observed over the past two decades. Objectives: Since epidemiological studies of MS in areas close to the Arctic Circle are rare, we evaluated the incidence and prevalence of MS in Northern Ostrobothnia by means of a retrospective cohort study covering the period 1992–2007. Methods: Patients with a definite clinical diagnosis of MS based on the Poser criteria and the early McDonald criteria of 2001 were identified in the region of Northern Ostrobothnia (population 386,972) and the incidence was calculated at 1-year time intervals, both overall and by gender. Results: The overall prevalence was 103/100,000 (95% CI, 93–113), with a female/male ratio of 2.17. The mean overall incidence was 6.3/100,000 (95% CI, 5.2–7.2). The incidence shows a tendency to increase over the 16-year period due to a pronounced rise in the female incidence. Conclusions: Our results show a high prevalence of MS in Northern Ostrobothnia and a disproportional increase in the female MS incidence. These recent epidemiological features may be associated with environmental risk factors such as a vitamin D deficit, low life-long UV radiation and the high-latitude geographical location.

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 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 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.

Gamma knife radiosurgery for trigeminal neuralgia associated with multiple sclerosis

2002 ◽  
Vol 97 ◽  
pp. 529-532 ◽  
Author(s):  
C. Leland Rogers ◽  
Andrew G. Shetter ◽  
Francisco A. Ponce ◽  
Jeffrey A. Fiedler ◽  
Kris A. Smith ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Pain Relief ◽  
Trigeminal Neuralgia ◽  
Gamma Knife ◽  
Maximum Dose ◽  
Gamma Knife Radiosurgery ◽  
Content Type ◽  
Experienced Pain ◽  
The Mean ◽  
Fine Print

Object. The authors assessed the efficacy and complications from gamma knife radiosurgery (GKS) for multiple sclerosis (MS)-associated trigeminal neuralgia (TN). Methods. There were 15 patients with MS-associated TN (MS—TN). Treatment involved three sequential protocols, 70 to 90-Gy maximum dose, using a single 4-mm isocenter targeting the ipsilateral trigeminal nerve at its junction with the pons with the 50% isodose. Pain was appraised by each patient by using Barrow Neurological Institute (BNI) Scores I through IV: I, no pain; II, occasional pain not requiring medication; IIIa, no pain but continued medication; IIIb, some pain, controlled with medication; IV, some pain, not controlled with medication; and V, severe pain/no pain relief. With a mean follow up of 17 months (range 6–38 months), 12 (80%) of 15 patients experienced pain relief. Three patients (20%) reported no relief (BNI Score V). For responders, the mean latency from treatment to the onset of pain relief was 13 days (range 1–61 days). Maximal relief was achieved after a mean latency of 56 days (range 1–157 days). Five patients underwent a second GKS after a mean interval of 534 days (range 231–946 days). The mean maximum dose at this second treatment was 48 Gy. The target was unchanged from the first treatment. All five patients who underwent repeated GKS improved. Complications were limited to delayed facial hypesthesias. Two (13%) of 15 patients experienced onset of numbness after the first GKS, as well as two of five patients following a second GKS. The patients found this mild and not bothersome. Each patient who developed hypesthesias also experienced complete pain relief. Conclusions. Gamma knife radiosurgery is an effective treatment for MS—TN. Radiosurgery carries an acceptable small risk of mild facial hypesthesias, and hypesthesia appears predictive of a favorable outcome.

Validation of the NARCOMS Registry: fatigue assessment

2005 ◽  
Vol 11 (5) ◽  
pp. 583-584 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry ◽  
Olympia Hadjimichael ◽  
Denise Campagnolo ◽  
...  
Keyword(s):  
Construct Validity ◽  
Convergent Validity ◽  
Disease Duration ◽  
Research Committee ◽  
The North ◽  
Impact Scale ◽  
Fatigue Severity ◽  
Fatigue Impact Scale ◽  
American Research ◽  
Registry Report

Participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry report disability using Performance Scales (PS), which assess eight domains. We aimed to validate the PS fatigue subscale (PSF) using the Fatigue Severity Scale (FSS) and the Modified Fatigue Impact Scale (MFIS) as external criteria. We measured correlations between the PSF and age, disease duration and PS subscales to assess construct validity. The PSF correlated strongly with the MFIS (r=0.72, p<0.0001) and FSS (r=0.75, p<0.0001). Correlations between the PSF and age, disease duration were low, indicating divergent validity. Correlations between the PSF and spasticity, sensory and mobility PS scales were moderate, indicating convergent validity. The PSF has adequate criterion and construct validity in MS.

Sign in / Sign up

Export Citation Format

Share Document