North American Research Committee Research Articles

Sociodemographic and clinical correlates of device-measured sedentary behaviour in multiple sclerosis

Purpose This study examined sociodemographic and clinical variables as correlates of device-measured volume and pattern of sedentary behaviour in persons with multiple sclerosis (MS). Materials and methods Participants were recruited through a standardised invitation letter distributed among 1000 persons randomly selected from the North American Research Committee on MS registry. Those who volunteered wore an accelerometer for 7 d and provided sociodemographic and clinical information. Results There were 233 persons with MS who were included in the analyses. Linear regression analyses indicated that age and MS type explained significant variance in total sedentary time per day as well as number of breaks in sedentary time. Only disability status explained significant variance in sedentary bout length, whereas age explained significant variance in both number of long sedentary bouts per day. Both age and disability status explained significant variance total time spent in long sedentary bouts per day. Conclusions Persons of older age, progressive MS, and higher disability status spend prolonged, uninterrupted periods of time sedentary. Such results highlight the need for targeted interventions in sub-populations of MS that reduce time spent sedentary and break up the pattern of sedentary behaviour. Implications for Rehabilitation Sedentary behaviour is highly prevalent in multiple sclerosis and may be associated with comorbid conditions. The majority of research on sedentary behaviour in multiple sclerosis has been derived from self-report instruments that only measure the volume of sitting time per day. This study indicates that persons with multiple sclerosis spend a significant amount of time sedentary, and those who are older, have progressive multiple sclerosis, and have higher disability status spend prolonged, uninterrupted periods of time sedentary. Such results highlight the need for targeted behavioural interventions in these sub-populations of multiple sclerosis to reduce time spent sedentary and break the pattern of sedentary behaviour to manage its consequences.

Measures of general and abdominal obesity and disability severity in a large population of people with multiple sclerosis

Background: Metabolic comorbidity is overrepresented in people with multiple sclerosis (MS) and is associated with adverse MS outcomes. Excess visceral adiposity, approximated using waist circumference (WC), is a risk factor for metabolic comorbidity and predicts poorer outcomes in other neurologic diseases. Objective: To evaluate the association between WC and clinical and disease characteristics in people with MS. Methods: North American Research Committee on MS (NARCOMS) registry participants reported height and weight (used to calculate body mass index (BMI)) and were mailed a tape measure with instructions to measure WC. We considered WC continuously and used cut-points derived from the abdominal obesity criteria for the metabolic syndrome (men: WC ⩾ 40 in; women: WC ⩾ 35 in). We assessed the association between WC and disability (Patient-Determined Disease Steps) and symptom severity (validated scales) using multivariable-adjusted multinomial models. Results: Of 6367 responders with MS, we included 5832 (92%). Of these, 3181 (55%) reported WC meeting criteria for the abdominal obesity component of metabolic syndrome. In multivariable models adjusting for overall obesity status, WC was associated with 47% increased odds of severe versus mild disability (odds ratio (OR): 1.47; 95% confidence interval (CI): 1.22–1.78). Conclusions: Increased WC is associated with more severe disability, even after adjusting for overall obesity in this large cross-sectional survey.

Social-cognitive theory variables as correlates of sedentary behavior in multiple sclerosis: Preliminary evidence

BackgroundPersons with multiple sclerosis(MS) engage in substantially more sedentary behavior than adults from the general population. ObjectiveHypothesis: This preliminary, cross-sectional study examined social-cognitive theory(SCT) variables as correlates of sedentary behavior in MS. We hypothesized that scores from SCT variables for sedentary behavior change would correlate with scores from self-reported and device-measured volumes of sedentary behavior in MS. We further hypothesized that the correlations would be stronger for self-reported than device-measured sedentary behavior, and that the primary correlate of sedentary behavior would be self-efficacy. MethodsWe recruited participants through a random sample of 1,000 persons enrolled in the North American Research Committee on MS registry, and 275 of the 296 persons who underwent screening volunteered for the study. Participants wore an ActiGraph accelerometer on a belt around the waist for measuring minutes per day of sedentary behavior. Participants further completed a newly-created, study-specific measure of SCT variables for reducing sedentary behavior(i.e., self-efficacy, outcome expectations, barriers, goal setting, & planning) and the abbreviated International Physical Activity Questionnaire as a self-report measure of sitting time. ResultsSelf-reported sedentary behavior was associated with self-efficacy(r = −0.47), goal setting(r = −0.31), planning(r = −0.35), and barriers(r = 0.39) for reducing sedentary behavior. Device-measured sedentary behavior was associated with self-efficacy(r = −0.32), goal setting(r = −0.21), planning(r = −0.18), and barriers(r = 0.20). Self-efficacy(β = −0.29), barriers(β = 0.26), and planning(β = −0.24) independently explained variance in self-reported sedentary behavior(R2 = 0.33). Only self-efficacy(β = −0.32) independently explained variance in device-measured sedentary behavior(R2 = 0.10). ConclusionSCT constructs might be reasonable targets of a behavioral intervention for reducing sedentary behavior in MS.

A survey of risk tolerance to multiple sclerosis therapies.

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.

A Population-Based Investigation of Health-Care Needs and Preferences in American Adults With Multiple Sclerosis.

Background:Comprehensive and effective multiple sclerosis (MS) health care requires understanding of patients’ needs, preferences, and priorities.Objective:To evaluate priorities of patients with MS for their MS care.Methods:Participants included 3003 Americans with MS recruited through the National MS Society and the North American Research Committee on Multiple Sclerosis patient registry. Participants completed a comprehensive questionnaire on aspects of their health-care experiences.Results:Participants identified the top 3 health-care priorities as (1) the affordability of MS health care, (2) ensuring that non-MS health-care providers have more education about MS and how it can interact with other conditions, and (3) access to an MS center or specialized MS clinic with MS health-care professionals together in one place. Participants receiving care in an MS center rated the quality and their satisfaction with care higher than those receiving care in other settings. Although having the opportunity to evaluate their health-care quality was important to the participants, only 36.4% had been provided the opportunity in the past year.Conclusions:This study identifies health-care priorities and concerns for Americans with MS.

Sex differences in predictors of illness intrusiveness in persons with multiple sclerosis

Multiple sclerosis (MS) is a complex, chronic disease that can have debilitating effects on daily activities and well-being, compromising health-related quality of life. One underlying determinant of quality of life (QOL) is perceived illness intrusiveness, which examines the disruptiveness of the condition and/or its related treatment on engagement in interest and activities, in turn affecting psychological functioning. There is evidence that persons with MS (PwMS) have higher level of illness intrusiveness compared to those with other chronic conditions; however, limited research exists on differences by sex. This study aimed to explore these possible differences between men and women, hypothesizing that men with MS will have overall higher illness intrusiveness (lower QOL) when compared to women with MS. A total of 922 PwMS were primarily recruited through the North American Research Committee on MS Registry. The participants completed a one-time anonymous online survey. Illness intrusiveness was measured using the Illness Intrusiveness Ratings Scale (IIRS) total score and three subscales. Independent t-tests determined differences in demographics, disease characteristics, and IIRS outcomes. Hierarchical regressions were then used to further assess whether sex was a significant predictor of illness intrusiveness. Men exhibited greater overall, intimacy, and relationship and personal development-related perceived illness intrusiveness. However, sex was only a significant predictor of the Intimacy IIRS subscale after accounting for age, disability, and depression. These findings highlight the intrusiveness of MS on intimacy and sexual functioning, particularly among men. Potential clinical implications and future directions are discussed.

Use of eHealth and mHealth technology by persons with multiple sclerosis

BackgroundHealth communication has evolved substantially over the last few years as the field of electronic health (eHealth) technologies has emerged. It is unknown what demographic and clinical characteristics are associated with use of eHealth technologies in MS. As these technologies are more widely adopted in health settings, it is important that health care providers understand who is using them, and to recognize potential disparities if they exist. ObjectiveWe aimed to examine the use of eHealth technologies among persons with multiple sclerosis (MS), including the adoption of mobile Health (mHealth) applications (apps) and telehealth, perceived benefits of using mHealth apps, and sociodemographic and clinical characteristics associated with use of these technologies. MethodsIn the spring 2017, we surveyed participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry about their use of eHealth technologies using questions adapted from the Health Information National Trends (HINTS) 4 Cycle 4 survey. Participants reported their internet use, electronic devices used, use of health related software apps and perceived benefits from using those apps, and their interest in exchanging medical information with a health care professional electronically. We used descriptive statistics to report use of eHealth technologies and multivariable logistic regression to evaluate factors associated with use of electronic devices, use of mHealth apps, telehealth use, and perceived benefits of using mHealth apps. ResultsOf 6423 participants included in the analysis most participants were female, and white, with a mean (SD) age of 59.7 (10.1) years. Overall, 5408 (84.2%) had exchanged medical information with a health professional most often using a secure online portal (1839, 28.6%), followed by email (1327, 20.7%). of the 5529 smartphone and tablet users, 2556 (46.2%) used a mHealth app. Factors associated with a higher likelihood of reporting use of smartphones or tablets, mHealth apps and with perceived benefits of using these apps included online survey response, younger age, having comorbidities, and higher income and education levels. ConclusionUse of eHealth technologies is common in the MS population and facilitates the exchange of health care information with providers. Use of mHealth apps is perceived to have health benefits. However, use of eHealth and mHealth technologies varies substantially with sociodemographic factors, and health care providers need to be aware of these disparities as these technologies are increasingly leveraged in health care settings.

Development of the Multiple Sclerosis Resiliency Scale (MSRS).

While resilience has been an area of increasing research, there are no measures that are specific to the psychological, social, and physical factors associated with resilience in persons with multiple sclerosis (PwMS). This study aimed to develop the MS Resiliency Scale (MSRS), a multidimensional measure. Items were created based on a review of the literature, with five hypothesized subscales, and then evaluated in a large sample of PwMS. Participants (N = 932) were primarily recruited through the North American Research Committee on MS (NARCOMS) and completed the study electronically. Principal components analysis was utilized to determine the number of factors and whether they aligned with the theorized model. Using an unforced solution with oblique (promax) rotation and Kaiser normalization, and suppressing items with coefficients below 0.4, 25 items were retained in five subscales that accounted for 42.75% of the variance: Emotional and Cognitive Strategies (13 items; α = .92), Physical Activity and Diet (3 items; α = .77), MS Peer Support (2 items; α = .82), Support from Family and Friends (5 items; α = .79), and Spirituality (2 items; α = .91). The total score was negatively correlated with depression, r = -.72, p < .001 and anxiety, r = -.56, p < .001. The 25-item MSRS assesses several psychological, social, and physical factors associated with resilience in PwMS, and may be a helpful tool in identifying individuals in need of additional assistance or support. (PsycINFO Database Record

Identifying priority outcomes that influence selection of disease-modifying therapies in MS.

Persons with multiple sclerosis (MS) may now choose from a broad array of approved disease-modifying treatments (DMTs). The priority that patients and practitioners assign to specific clinical outcomes is likely to influence the MS DMT selection process. We invited 9,126 participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry and 18 members of the American Academy of Neurology MS DMT guideline development panel to complete a brief survey prioritizing outcomes of importance to MS DMT selection. The frequency of outcomes ranked as first, second, or third priority by respondents were compared across groups. A total of 2,056 of 9,126 (23.6%) NARCOMS participants and all 18 members of the MS DMT guideline development panel (100%) completed the survey. Reduced disability progression was identified as a priority by a majority of respondents in both groups. Guideline panelists tended to be more likely than persons with MS to prioritize relapse rate reduction (p = 0.055). Respondents from both groups commonly cited the "selection of therapies most likely to lead to improvements in quality of life measures, MS symptoms, and preservation of cognition" as top priorities in DMT selection; however, these priority outcomes were reported in fewer than 20% of clinical trials used to inform MS DMT guideline development. Specific outcomes were defined by similar proportions of persons with MS and guideline panelists as priority outcomes influencing MS DMT selection. Several of these priority outcomes were not routinely reported in clinical trials, identifying areas for future evidence development.

Judgment hurts: The psychological consequences of experiencing stigma in multiple sclerosis

RationalePeople living with MS often report feeling stigmatized, but little research has examined the psychological impact of this, which is important considering the high prevalence of depression in this population. ObjectivesThe aim of this study was to assess, concurrently and prospectively, the association between stigma and depression in people living with MS. MethodsData were available from 5369 participants enrolled in the semi-annual survey conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS). Participants reported their MS stigma and depression in the spring 2013 update survey (T1) and their depression again one year later (T2). Demographic and health-related covariates were also assessed. ResultsPeople experiencing higher levels of stigma reported more depression symptoms and were more likely to meet the threshold for clinical depression at both times, even controlling for covariates. Higher levels of stigma also predicted T2 depression, controlling for T1 depression (and covariates), suggesting a possible causal association. Greater psychosocial reserve, a composite of measures assessing participants’ feelings of belonging, social support, and sense of control, attenuated the association between stigma and depression. ConclusionsStigma is an important but understudied predictor of depression in people living with MS, but greater psychosocial reserve provides a buffer.

A survey of dietary characteristics in a large population of people with multiple sclerosis

IntroductionDietary approaches to management of MS has been proposed for several decades, yet very little is known concerning dietary composition or adherence to specialized diets in people with multiple sclerosis (MS). MethodsWe conducted a survey of participants in the North American Research Committee on MS (NARCOMS) registry assessing diet composition and the prevalence of 19 different diets. We characterized prevalence of different diets and compared diet composition with estimated intakes from the National Health and Nutrition Examination Survey (NHANES) survey respondents and across demographics and MS clinical characteristics. ResultsAmong the 7639 (68%) responders, 6990 provided sufficient information on diet to be included in the analysis. Compared to NHANES participants, responders tended to have comparable intakes of fruit, vegetables and legumes (mean [SD] 2.5 [1.0] servings/day) and whole grains (0.9 [1.3] servings/day) and consume less added sugar (NARCOMS: 9.7 [6.0] vs. NHANES: 18.5[13.5] tsp/day; P < 0.001) and more red meat (NARCOMS: 0.50 [0.47] vs. NHANES: 0.35 [0.97] servings/day; P < 0.001). Of the 3120 (45%) participants who reported any history of following a specific diet, commonly-followed diets were: low-sugar (n = 642), low-carbohydrate (n = 508) and low-calorie (n = 475). Those with no history of following any specific diet were more likely to have progressive MS, be more obese, have worse overall diet quality, not participate in physical activity and smoke (all P < 0.001). ConclusionsIn this large survey, we found that diet composition in MS patients may vary by demographic and disease characteristics.

Factors associated with excessive sitting time in multiple sclerosis

ObjectiveThe objective of this study was to examine the sociodemographic, clinical, and behavioral factors associated with excessive sitting time in persons with multiple sclerosis (MS). MethodsUseful data were obtained from 6483 persons with MS who completed the semi-annual survey of the North American Research Committee on Multiple Sclerosis registry conducted in the spring of 2015. Sociodemographic, clinical, and behavioral data were collected using self-report questionnaires. Sitting time per day was determined using the International Physical Activity Questionnaire. We conducted data analyses in May-June 2017 and defined those classified above the 75th percentile of sitting time as excessive sitters. Multivariate binary logistic regression was used to calculate the odds ratios for being an excessive sitter for sociodemographic, clinical, and behavioral variables. ResultsThe results indicated that participants who were moderately disabled, severely disabled but ambulatory, or severely disabled but non-ambulatory were 1.57, 2.62, and 8.70 times more likely to be excessive sitters than those reporting mild disability. Persons with MS who were insufficiently active were 2.61 times more likely to be excessive sitters than persons who were sufficiently active. ConclusionThis study identified disability status and physical activity levels as two prominent factors associated with the likelihood of being an excessive sitter in MS and this will inform the design of future interventions for reducing sedentary behavior in this population.

National estimates of self-reported sitting time in adults with multiple sclerosis.

BackgroundLimited data exist on the prevalence and distribution of sedentary behavior (SB) in multiple sclerosis (MS).ObjectiveThe objective of this paper is to describe sitting time as a metric of SB in a large national sample of people with MS.MethodsA total of 8004 individuals from the North American Research Committee on MS (NARCOMS) Registry completed the sitting time question from the International Physical Activity Questionnaire in spring 2015. We present descriptive data on sitting time for the total sample and across sociodemographic, clinical, and behavioral characteristics.ResultsThe final sample included 6483 individuals. Of these, 36.7% were classified with mild disability, 24.7% with moderate disability, and 38.6% with severe disability. Median sitting time for the total sample was 480 min/day (P25 = 310 min/day, P75 = 720 min/day). Sitting time was highest for individuals with MS who were male (540 min/day), not married (540 min/day), had a disease duration >30 years (540 min/day), were underweight (540.5 min/day), had an annual income of < $15,000 (585 min/day), presented with a progressive form of MS (600 min/day), were classified as insufficiently active (600 min/day), or presented with severe disability (661 min/day).ConclusionSitting time is twice as high in individuals with MS compared to the general population (240 min/day).

Treatment satisfaction and bothersome bladder, bowel, sexual symptoms in multiple sclerosis

BackgroundBladder, bowel, and sexual symptoms are common among persons with multiple sclerosis (MS). We aimed to investigate the frequency and severity of bladder, bowel, and sexual symptoms, the relationships between these symptoms, satisfaction with treatment of these symptoms, and factors associated with symptom severity and treatment satisfaction. MethodsIn the fall 2010, we surveyed participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry regarding the severity of being bothered by bladder, bowel, and sexual symptoms, their satisfaction of health providers’ inquiry and treatment with these symptoms, and whether their quality of life (QOL) had changed with the treatment. Logistic regression was used to evaluate demographic and clinical factors associated with each outcome. ResultsOf 9341 respondents included in the study, 7720 (77.4%) were female and their mean (SD) age was 50.3 (10.5) years. Ninety-one percent of participants were mildly, moderately or severely bothered by bladder, bowel or sexual symptoms. Severity of disability (measured using the Patient Determined Disease Steps), having a relapse in the last 6 months, and catheter use were consistently associated with being bothered (versus not bothered) by each of the three symptoms. Among respondents, 5764 (62.1%) reported that their MS health providers asked about bladder problems, 4523 (51.1%) about bowel problems, and 1890 (20.6%) about sexual problems. At most one-third of participants were completely satisfied with treatment for any of the symptoms. For those who reported how their QOL changed with treatment, 23.0% reported their QOL being better. ConclusionBladder, bowel, and sexual problems remain common among persons with MS, and treatment satisfaction is low. Health care providers should consider systematically asking about these symptoms in clinical practice. Greater efforts could be devoted to developing novel, effective therapies to manage these symptoms and thereby improve QOL.

Diet quality is associated with disability and symptom severity in multiple sclerosis.

To assess the association between diet quality and intake of specific foods with disability and symptom severity in people with multiple sclerosis (MS). In 2015, participants in the North American Research Committee on MS (NARCOMS) Registry completed a dietary screener questionnaire that estimates intake of fruits, vegetables and legumes, whole grains, added sugars, and red/processed meats. We constructed an overall diet quality score for each individual based on these food groups; higher scores denoted a healthier diet. We assessed the association between diet quality and disability status as measured using Patient-Determined Disease Steps (PDDS) and symptom severity using proportional odds models, adjusting for age, sex, income, body mass index, smoking status, and disease duration. We assessed whether a composite healthy lifestyle measure, a healthier diet, healthy weight (body mass index <25), routine physical activity, and abstinence from smoking was associated with symptom severity. Of the 7,639 (68%) responders, 6,989 reported physician-diagnosed MS and provided dietary information. Participants with diet quality scores in the highest quintile had lower levels of disability (PDDS; proportional odds ratio [OR] for Q5 vs Q1 0.80; 95% confidence interval [CI] 0.69-0.93) and lower depression scores (proportional OR for Q5 vs Q1 0.82; 95% CI 0.70-0.97). Individuals reporting a composite healthy lifestyle had lower odds of reporting severe fatigue (0.69; 95% CI 0.59-0.81), depression (0.53; 95% CI 0.43-0.66), pain (0.56; 95% CI 0.48-0.67), or cognitive impairment (0.67; 95% CI 0.55-0.79). Our large cross-sectional survey suggests a healthy diet and a composite healthy lifestyle are associated with lesser disability and symptom burden in MS.

Shared Decision Making and Autonomy Among US Participants with Multiple Sclerosis in the NARCOMS Registry.

Treatment decisions in multiple sclerosis (MS) are affected by many factors and are made by the patient, doctor, or both. With new disease-modifying therapies (DMTs) emerging, the complexity surrounding treatment decisions is increasing, further emphasizing the importance of understanding decision-making preferences. North American Research Committee on Multiple Sclerosis (NARCOMS) Registry participants completed the Fall 2014 Update survey, which included the Control Preferences Scale (CPS). The CPS consists of five images showing different patient/doctor roles in treatment decision making. The images were collapsed to three categories: patient-centered, shared, and physician-centered decision-making preferences. Associations between decision-making preferences and demographic and clinical factors were evaluated using multivariable logistic regression. Of 7009 participants, 79.3% were women and 93.5% were white (mean [SD] age, 57.6 [10.3] years); 56.7% reported a history of relapses. Patient-centered decision making was most commonly preferred by participants (47.9%), followed by shared decision making (SDM; 42.8%). SDM preference was higher for women and those taking DMTs and increased with age and disease duration (all P < .05). Patient-centered decisions were most common for respondents not taking a DMT at the time of the survey and were preferred by those who had no DMT history compared with those who had previously taken a DMT (P < .0001). There was no difference in SDM preference by current MS disease course after adjusting for other disease-related factors. Responders reported most commonly considering their doctor's opinion before making a treatment decision and making decisions jointly with their doctor. DMT use, gender, and age were associated with decision-making preference.

Editors' Note

Editors' Note: In the article “High hypothetical interest in physician-assisted death in multiple sclerosis,” the opinions of persons with multiple sclerosis (MS) regarding physician-assisted death (PAD) were assessed. Investigators surveyed participants in the North American Research Committee on Multiple Sclerosis Registry regarding PAD. For each of 5 hypothetical situations, respondents indicated whether they definitely would, probably would, probably would not, or definitely would not consider PAD. More than one-third of surveyed patients with MS said they would definitely or probably consider PAD in each of the 5 hypothetical situations and two-thirds would consider requesting PAD for unbearable pain. On multivariable analysis, religiosity, social support, depression, pain, disability, sex, and race were associated with considering PAD in some or all of the situations presented. The authors concluded that depending upon the situation, a large proportion of persons with MS would consider PAD and that the association of depression with considering PAD emphasizes the importance of diagnosing and treating depression. An accompanying editorial, “Physician-assisted death in chronic neurologic diseases,” by Bernat and McQuillen, stated that physicians should not suggest to their patients that dying is a better solution than continued life and that for patients who muse about PAD, physicians should have a low threshold for referring them to palliative medicine to achieve optimal symptom palliation including the identification and treatment of depression. Commenting on the study, Dr. Masdeu discusses Leo Alexander's report on medical records left behind by the Nazi regime. Alexander concluded that atrocious crimes committed were, at first, merely a subtle shift in emphasis in the basic attitude of the physicians and that those started with the acceptance that there is such a thing as life not worthy to be lived. Commenting on the editorial, Dr. Bier reminds the readers that among legislative criteria granting the right to practice PAD, there are 4 requirements: requests must be voluntary, persistent, well-thought, and well-informed. Furthermore, he corrects that the law in Belgium allows only active euthanasia and not PAD (the editorial stated that in the Netherlands and Belgium, “voluntary active euthanasia now far surpasses PAD in frequency”). Finally, Dr. Sethi highlights the other side of the argument, explaining that a fundamental belief underlying the right to die (RTD) is that one's body and one's life are one's own to dispose of as one sees fit. He adds that a form of PAD by withholding extraordinary life support measures (such as intubation and mechanical ventilation of terminally ill patients) is already routinely practiced in critical care units across the world and that different religions have different perspectives when it comes to the RTD. Marrie et al., authors of the original study, explain that the issue of PAD in chronic illness is complex and that whether the individual physician supports or opposes PAD, it is clear that people with MS are thinking about this issue and want to talk about it. They also add that perspectives may differ based on religious beliefs, cultural practices, and other factors. Also in response, Drs. Bernat and McQuillen clarify that, from a legal standpoint, the right to die is a slogan since no American court found a constitutionally protected right to die. However, terminally ill patients may voluntarily choose to stop eating and drinking without it being considered suicide. From an ethical perspective, it remains controversial whether death with dignity would be best achieved by legalizing PAD or by enhancing the quality and availability of palliative care. —Chafic Karam, MD, and Robert C. Griggs, MD Editors' Note: In the article “High hypothetical interest in physician-assisted death in multiple sclerosis,” the opinions of persons with multiple sclerosis (MS) regarding physician-assisted death (PAD) were assessed. Investigators surveyed participants in the North American Research Committee on Multiple Sclerosis Registry regarding PAD.

Editorial.

As the end of the year approaches rapidly, it is time for some of us to meet our continuing education (CE) credit requirements. Since the March/April 2016 issue, IJMSC has been offering CE credits to physicians and nurses for reading some of the articles published in its pages and completing a posttest. To our editorial team, this initiative represents a way to further the journal's educational mission, and the number of credits claimed to date suggests that it is beneficial to our readers. We thank our authors and reviewers, our editorial board, and the Consortium of Multiple Sclerosis Centers (CMSC) leadership and staff for their contribution to this effort.In this issue, CE credit is offered for the article by Rabadi and Aston, which reports on predictors of mortality among veterans with MS treated in an outpatient setting. Better knowledge of the predictors and causes of excess mortality related to MS may help develop strategies to increase life expectancy in the most vulnerable groups of patients.Measuring clinical disease activity and the outcomes of multidisciplinary care requires valid and reliable measurement tools. Bennett and colleagues provide additional data on the psychometric properties of four measures of walking that can be administered in a clinical setting. These measures can be useful in complementing the Timed 25-Foot Walk test, particularly for the purpose of rehabilitation, as they assess various aspects of walking such as dynamic balance and endurance. Mañago and colleagues introduce a protocol for measuring strength, a common target of rehabilitation associated with functional performance, using a handheld dynamometer and simple endurance tests. This protocol, which is feasible in a clinical setting, exhibits satisfactory discriminant validity, test-retest reliability, and response stability in this first validation study.Neurologic symptoms represent the “face of the disease” for those affected by MS. Symptoms often start months to years before the diagnosis, and their management is an essential component of care. Fatigue is one of the most commonly reported symptoms of MS, but its pathophysiology has not been fully elucidated. The article by Aldughmi and colleagues reminds us that perceived fatigue does not always correlate with fatigability on physical and cognitive performance tasks, suggesting that they represent different, albeit overlapping, phenomena. Trigeminal neuralgia is known as one of the less common symptoms of MS, but Fallata and colleagues found that nearly 10% of over 8,500 North American Research Committee on Multiple Sclerosis Registry participants reported experiencing symptoms of trigeminal neuralgia, and in 15% of them the symptoms preceded the diagnosis of MS.It is essential for the safety of our patients to disseminate information about unusual adverse effects of disease-modifying therapies. Ferguson reports a case of serum sickness with glatiramer acetate, which occurred again after rechallenge with the medication.Mind-body therapies are increasingly sought by MS patients, and their use is supported by a growing body of data. However, there are still few evidence-based programs available in the community. Gilbertson and Klatt report encouraging feasibility and efficacy results from a pilot study of Mindfulness in Motion, an 8-week program combining yoga, mindfulness meditation, and relaxing music.I wish you pleasant and instructive readings.

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

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. 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. 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). 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.

Perspectives on marijuana use and effectiveness: A survey of NARCOMS participants.

Interest in and use of marijuana by persons with multiple sclerosis (MS) has increased. While potential benefits have been reported, so have concerns about potential risks. Few large studies have been conducted about the perceptions and current usage of marijuana and medical cannabinoids in persons with MS. Participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) registry were surveyed in 2014 regarding legality and history of marijuana usage, both before and after diagnosis with MS. A total of 5,481 participants responded, with 78.2% female, 90% relapsing disease at onset, and a current mean age of 55.5 (10.2) years. Sixty-four percent had tried marijuana prior to their MS diagnosis, 47% have considered using for their MS, 26% have used for their MS, 20% have spoken with their physician about use, and 16% are currently using marijuana. Ninety-one percent think marijuana should be legal in some form. Men, those with higher disability, current and past nicotine smokers, and younger age were associated with a higher likelihood of current use. The majority of responders favor legalization and report high interest in the use of marijuana for treatment of MS symptoms, but may be reluctant to discuss this with health care providers. Health care providers should systematically inquire about use of marijuana.