scholarly journals A Survey of Cannabis Use in a Large US-Based Cohort of People with Multiple Sclerosis

2021 ◽  
Vol 23 (6) ◽  
pp. 245-252
Author(s):  
Amber Salter ◽  
Robert J. Fox ◽  
Gary Cutter ◽  
Ruth Ann Marrie ◽  
Kate E. Nichol ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Sleep Problems ◽  
Safety Data ◽  
The United States ◽  
Cannabis Use ◽  
Future Research ◽  
Research Committee ◽  
The North ◽  
American Research ◽  
Lower Education

Abstract Background: As cannabis products become increasingly accessible across the United States, it is important to understand the contemporary use of cannabis for managing multiple sclerosis (MS) symptoms. Methods: We invited participants with MS from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry (aged 18 years or older) to complete a supplemental survey on cannabis use between March and April 2020. Participants reported cannabis use, treated symptoms, patterns, preferences, methods of use, and the factors limiting use. Findings are reported using descriptive statistics. Results: Of the 6934 participants invited, 3249 responded. Of the respondents, 31% reported having ever used cannabis to treat MS symptoms, with 20% currently using cannabis. The remaining 69% had never used cannabis for MS symptoms, for reasons including not enough data about efficacy (40%) and safety (27%), and concerns about legality (25%) and cost (18%). The most common symptoms current users were attempting to treat were spasticity (80%), pain (69%), and sleep problems (61%). Ever users (vs never users) were more likely to be younger, be non-White, have lower education, reside in the Northeast and West, be unemployed, be younger at symptom onset, be currently smoking, and have higher levels of disability and MS-related symptoms (all P < .001). Conclusions: Despite concerns about insufficient safety and efficacy data, legality, and cost, almost one-third of NARCOMS Registry respondents report having tried nonprescription cannabis products in an attempt to alleviate their symptoms. Given the lack of efficacy and safety data on such products, future research in this area is warranted.

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.

Differences in Bladder Care for Veterans with Multiple Sclerosis by Treatment Location

2009 ◽  
Vol 11 (2) ◽  
pp. 91-97 ◽  
Author(s):  
Ruth Ann Marrie ◽  
Gary Cutter ◽  
Tuula Tyry ◽  
Denise Campagnolo ◽  
Timothy Vollmer
Keyword(s):  
Multiple Sclerosis ◽  
Multidisciplinary Care ◽  
Veterans Health ◽  
Health Administration ◽  
Research Committee ◽  
Urogenital Distress Inventory ◽  
The North ◽  
Bladder Management ◽  
American Research ◽  
Independent Association

Previous work suggested that veterans with multiple sclerosis (MS) treated through the Veterans Health Administration (VHA) had greater access to multidisciplinary care than veterans treated elsewhere. It is unknown whether other VHA-related differences in processes of MS care exist. Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we aimed to compare bladder management reported by veterans who receive care through the VHA (VHA veterans) and those who do not (non-VHA veterans). In 2005, NARCOMS participants completed the Urogenital Distress Inventory–6 (UDI-6) and reported urologic investigations and treatments. Using multivariable logistic regression, we assessed the independent association of VHA care with investigations or treatments. A total of 1247 veterans with MS responded to the questionnaire, of whom 1230 (98.6%) reported where they received their health care. Of these, 583 (47.4%) received some or all of their care through the VHA. After adjustment for demographic and clinical factors, VHA veterans more frequently reported undergoing urologic investigations than non-VHA veterans (adjusted odds ratio, 2.02; 95% confidence interval, 1.55–2.61). VHA veterans more frequently reported using pharmacologic and nonpharmacologic interventions than non-VHA veterans. Differences exist in the processes of MS bladder care between the VHA and elsewhere; this variation suggests the availability of opportunities to optimize such care.

scholarly journals Use of Single Screening Question From NARCOMS to Detect Severe Depression in Multiple Sclerosis

2008 ◽  
Vol 10 (1) ◽  
pp. 11-13 ◽  
Author(s):  
Megan Devitt ◽  
Frederick W. Foley ◽  
Rebecca J. Miller ◽  
Vance Zemon ◽  
June Halper ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Operating Characteristic ◽  
Characteristic Curve ◽  
Severe Depression ◽  
Self Report ◽  
Cutoff Score ◽  
Research Committee ◽  
The North ◽  
Screening Question ◽  
American Research

The current study evaluated a single self-report depression screening question used by the North American Research Committee on Multiple Sclerosis (NARCOMS) in terms of its ability to detect treatable (severe) clinical depression, as measured by a cutoff score on the Beck Depression Inventory II. Receiver-operating-characteristic curve analysis was used. The study found that the NARCOMS question demonstrated 70% sensitivity and 90% specificity in detecting severe depression.

scholarly journals Associations Between Treatment Satisfaction, Medication Beliefs, and Adherence to Disease-Modifying Therapies in Patients with Multiple Sclerosis

2018 ◽  
Vol 20 (6) ◽  
pp. 251-259 ◽  
Author(s):  
Andrew V. Thach ◽  
Carolyn M. Brown ◽  
Vivian Herrera ◽  
Rahul Sasane ◽  
Jamie C. Barner ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Treatment Satisfaction ◽  
Future Research ◽  
Research Committee ◽  
Medication Beliefs ◽  
Factors Affecting ◽  
The North ◽  
Disease Modifying Therapy ◽  
Effective Interventions ◽  
Disease Modifying

Abstract Background: Adherence to disease-modifying therapy (DMT) remains problematic for many patients with multiple sclerosis (MS). An improved understanding of factors affecting DMT adherence may inform effective interventions. This study examined associations between treatment satisfaction, medication beliefs, and DMT adherence. Methods: A survey was mailed in 2016 to 600 adult patients with relapsing-remitting MS taking an injectable or oral DMT. Patients were sampled from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. The survey measured self-reported DMT adherence (doses taken divided by doses prescribed during previous 2-week period—adherence ≥0.80), DMT satisfaction using the Treatment Satisfaction Questionnaire for Medication version II, medication beliefs using the Beliefs About Medicines Questionnaire, and demographic and clinical covariates. Relationships between variables were examined using multivariate logistic regression. Results: Final analyses included 489 usable surveys. Mean ± SD participant age was 60.5 ± 8.3 years. Most respondents were white (93.8%), female (86.6%), taking an injectable DMT (66.9%), and adherent to DMT (92.8%). Significant predictors of DMT adherence were age (odds ratio [OR], 1.086; 95% CI, 1.020–1.158; P = .011), type of DMT (oral vs. injectable; OR, 23.350; 95% CI, 2.254–241.892; P = .008), and DMT experience (naive vs. experienced; OR, 2.831; 95% CI, 1.018–7.878; P = .046). Conclusions: In patients with MS sampled from a patient registry, treatment satisfaction and medication beliefs were not significantly associated with DMT adherence. Based on significant predictors, younger patients, patients taking injectable DMTs, and patients with previous experience with another DMT(s) are at higher risk for nonadherence. Future research is warranted to assess relationships between variables in more diverse MS populations.

scholarly journals Uptake and Attitudes About Immunizations in People With Multiple Sclerosis

2021 ◽  
pp. 10.1212/CPJ.0000000000001099
Author(s):  
Ruth Ann Marrie ◽  
Leanne Kosowan ◽  
Gary R Cutter ◽  
Robert Fox ◽  
Amber Salter
Keyword(s):  
Multiple Sclerosis ◽  
Influenza Vaccine ◽  
Seasonal Influenza ◽  
Vaccine Uptake ◽  
Research Committee ◽  
Personal Preference ◽  
The North ◽  
Seasonal Flu ◽  
Flu Vaccine ◽  
American Research

AbstractObjective:By surveying a multiple sclerosis (MS) population, we tested the hypothesis that influenza vaccine uptake would not meet public health targets in a large multiple and that vaccine misconceptions would contribute to lower than desired uptake.Methods:In Spring 2020, we surveyed participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry regarding vaccinations. Participants reported whether they had received hepatitis A, hepatitis B, pneumococcal, shingles, varicella, measles/mumps/rubella, tetanus or influenza vaccines. Participants who had not received influenza vaccine last year reported why not. We summarized responses descriptively. Using multivariable logistic regression, we assessed participant characteristics associated with uptake of seasonal influenza vaccine.Results:Of 5,244 eligible respondents, 80.8% were female, with a mean (SD) age of 61.8 (10.1) years. Overall, 43.0% (2161/5032) of participants reported that their neurologist had ever asked about their immunization history. The percentage of participants who received the seasonal flu vaccine last year ranged from 59.1% among those aged 18-24 to 79.9% for persons aged ≥65 years. Among those who did not get the influenza vaccination those most common reasons were personal preference (29.6%), concerns about possible adverse effects in general (29.3%), and concerns that the vaccine would worsen their MS (23.7%).Conclusion:Vaccination uptake is lower than desired in the MS population as compared to existing recommendations, including for seasonal influenza. Misconceptions about the safety of vaccination in the context of MS and personal preference appear to play important roles in vaccination choices, highlighting the importance of education about these issues.

Reproductive decision making after the diagnosis of multiple sclerosis (MS)

2012 ◽  
Vol 19 (3) ◽  
pp. 351-358 ◽  
Author(s):  
S Alwan ◽  
IM Yee ◽  
M Dybalski ◽  
C Guimond ◽  
E Dwosh ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Inclusion Criteria ◽  
Research Committee ◽  
North Americans ◽  
Reproductive Decision ◽  
The North ◽  
Reproductive Decision Making ◽  
American Research ◽  
Self Administered Questionnaire

Objective: This study aimed to determine reproductive practices and attitudes of North Americans diagnosed with multiple sclerosis (MS) and the reasons for their reproductive decision making. Methods: A self-administered questionnaire on reproductive practices was mailed to 13,312 registrants of the North American Research Committee on Multiple Sclerosis (NARCOMS) database who met inclusion criteria for the study. Completed questionnaires were then returned to the authors in an anonymous format for analysis. Results: Among 5949 participants, the majority of respondents (79.1%) did not become pregnant following diagnosis of MS. Of these, 34.5% cited MS-related reasons for this decision. The most common MS-related reasons were symptoms interfering with parenting (71.2%), followed by concerns of burdening partner (50.7%) and of children inheriting MS (34.7%). The most common reason unrelated to MS for not having children was that they already have a “completed family” (55.6%). Of the 20.9% of participants who decided to become pregnant (or father a pregnancy) following a diagnosis of MS, 49.5% had two or more pregnancies. Conclusion: This study indicates that an MS diagnosis does not completely deter the consideration of childbearing in MS patients of both genders.

Validation of the NARCOMS registry: diagnosis

2007 ◽  
Vol 13 (6) ◽  
pp. 770-775 ◽  
Author(s):  
R.A. Marrie ◽  
G. Cutter ◽  
T. Tyry ◽  
D. Campagnolo ◽  
T. Vollmer
Keyword(s):  
Multiple Sclerosis ◽  
Medical Records ◽  
Telephone Interview ◽  
Response Rate ◽  
Age Of Onset ◽  
Research Committee ◽  
The North ◽  
Contact Information ◽  
Bladder Symptoms ◽  
American Research

The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is a patient registry, wherein the diagnoses of multiple sclerosis (MS) are unverified. We compared self-reported diagnoses of registry participants to physician-reported diagnoses, and with diagnoses based on medical records review. Registry participants with more than one of the following: age of onset <10 or >50 years, no bladder symptoms or fatigue, or zero or more than four relapses in the last year, were considered atypical. All others were considered typical. We sent letters to participants describing the study, surveyed treating physicians regarding the participants' diagnosis, and reviewed medical records. Diagnosis was classified by the McDonald and Poser criteria. Of the 240 participants sampled, 109 were in active registry status with accurate contact information. Of these, 52 consented, 29 refused and 28 did not respond (weighted response rate 76.3±4.5%). Some 37 of 38 physician surveys confirmed the diagnosis of MS (98.8±1.2%). After reviewing 41 medical records, we classified 53.2±8.9% of participants as definite MS, 16.9±6.8% as possible MS, while the remainder had insufficient data for diagnostic confirmation. We confirmed a diagnosis of MS in 98.7±1.3% of participants based on records review, physician survey or telephone interview, supporting the validity of the diagnoses reported by NARCOMS participants. Multiple Sclerosis 2007; 13: 770-775. http://msj.sagepub.com

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