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.

Comorbidity, socioeconomic status and multiple sclerosis

2008 ◽  
Vol 14 (8) ◽  
pp. 1091-1098 ◽  
Author(s):  
RA Marrie ◽  
R Horwitz ◽  
G Cutter ◽  
T Tyry ◽  
D Campagnolo ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Socioeconomic Status ◽  
Odds Ratio ◽  
Inclusion Criteria ◽  
Research Committee ◽  
Adverse Health Outcomes ◽  
The North ◽  
American Research ◽  
The Impact ◽  
Substantial Morbidity

Objective Multiple sclerosis (MS) is associated with substantial morbidity. The impact of comorbidity on MS is unknown, but comorbidity may explain some of the unpredictable progression. Comorbidity is common in the general population, and is associated with adverse health outcomes. To begin understanding the impact of comorbidity on MS, we need to know the breadth, type, and frequencies of comorbidities among MS patients. Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we aimed to describe comorbidities and their demographic predictors in MS. Methods In October 2006, we queried NARCOMS participants regarding physical comorbidities. Of 16,141 participants meeting the inclusion criteria, 8983 (55.7%) responded. Results Comorbidity was relatively common; if we considered conditions which are very likely to be accurately self-reported, then 3280 (36.7%) reported at least one physical comorbidity. The most frequently reported comorbidities were hypercholesterolemia (37%), hypertension (30%), and arthritis (16%). Associated with the risk of comorbidity were being male [females vs. males, odds ratio (OR) 0.77; 0.69–0.87]; age (age >60 years vs. age ≤44 years, OR 5.91; 4.95–7.06); race (African Americans vs. Whites, OR 1.46; 1.06–2.03); and socioeconomic status (Income <$15,000 vs. Income >$100,000, OR 1.37; 1.10–1.70). Conclusions Comorbidity is common in MS and similarly associated with socioeconomic status.

Perspectives of individuals with multiple sclerosis on discontinuation of disease-modifying therapies

2019 ◽  
Vol 26 (12) ◽  
pp. 1581-1589
Author(s):  
Marisa P McGinley ◽  
Philip A Cola ◽  
Robert J Fox ◽  
Jeffrey A Cohen ◽  
John J Corboy ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Structural Equation ◽  
Descriptive Analysis ◽  
Equation Modeling ◽  
Decision Making Process ◽  
Inclusion Criteria ◽  
Research Committee ◽  
Disease Modifying Therapies ◽  
Disease Modifying

Background: Therapeutic research in multiple sclerosis (MS) has focused on the development of treatments with little investigation regarding the possibility of discontinuation of disease-modifying therapies (DMTs). Objective: To understand the opinion of individuals with MS concerning stopping DMTs and the factors that influence the decision-making process. Methods: A mixed method approach was used starting with three focus groups from which a survey was developed. This survey was sent to 1000 participants in the North American Research Committee on Multiple Sclerosis registry who met inclusion criteria (age ⩾45 years; on most recent DMT for ⩾5 years). Descriptive analysis and structural equation modeling were used. Results: Of 1000 participants receiving the survey, 377 provided complete responses and met inclusion criteria. Only 11.9% of participants reported that if their disease was considered stable, they would consider coming off medications. A high level of external locus of control in influential others such as physicians significantly decreased the likelihood of considering discontinuation. Conclusions: Most individuals with MS report being unlikely to consider stopping MS therapy if their disease was considered “non-active.” As the results of studies concerning DMT discontinuation are obtained, information from providers will be an important part of individuals’ decision-making process.

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.

scholarly journals Multiple Sclerosis and Pregnancy: A Comparison Study

2013 ◽  
Vol 40 (4) ◽  
pp. 590-596 ◽  
Author(s):  
Sura Alwan ◽  
Magdalena Dybalski ◽  
Irene M. Yee ◽  
Talitha M. Greenwood ◽  
Elaine Roger ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Health Care ◽  
Health Care Providers ◽  
Health Care Systems ◽  
Care Program ◽  
Care Providers ◽  
Research Committee ◽  
The North ◽  
Reproductive Decision Making ◽  
Care Systems

Abstract:Objective:To determine whether different health care systems may affect reproductive decision-making among patients with Multiple Sclerosis (MS), we describe the reproductive practices and attitudes of Canadian MS patients ascertained from the multidisciplinary MS Clinic at Hôpital Notre-Dame in Montreal, Quebec (NDMSC), in comparison to those of matched American selfregistrants from the database of the North American Research Committee on Multiple Sclerosis (NARCOMS).Methods:A total of 665 self-administered questionnaires on reproductive practices were sent out to eligible attendees attending the NDMSC. The short questionnaires were completed and returned to the authors in an anonymous format for analysis.Results:A total of 459 completed questionnaires were returned. The majority of NDMSC respondents (72.5%) and NARCOMS subset (75.2% females), did not encounter a pregnancy following diagnosis of MS. The most common MS-related reason for this decision was “symptoms interfering with parenting” (75.0% for the NDMSC, 72.6% for the NARCOMS). The most commonly reported non-MS-related reason was “a completed family” by the time of diagnosis in both the NDMSC and NARCOMS subset (58.0%, 40.4%, respectively). Concerns about financial issues both related and unrelated to MS were also commonly reported by males and females in both cohorts but significantly more so among the NARCOMS participants.Conclusion:These results indicate that reproductive decisions of MS patients are highly affected by their illness and its associated disability, regardless of the available health care program. Health care providers should discuss their patients' reproductive needs and perceptions to help them make more informed decisions.

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 &lt; .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.

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.

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