Using the multiple sclerosis resiliency scale to identify psychological distress in persons with multiple sclerosis.

BACKGROUND: The Multiple Sclerosis Resiliency Scale (MSRS) is the first resilience measure that is specific to multiple sclerosis (MS)-related challenges. In order for the MSRS to be a valuable tool for clinicians, it is important to identify what is a meaningful score. As such, this study aimed to examine the MSRS' ability to identify persons with MS experiencing depression or anxiety symptoms, as determined using clinically significant scores on the Hospital Anxiety and Depression Scale (HADS). METHODS: Participants (n = 884) were persons with MS who were recruited electronically primarily through the North American Research Committee on MS (NARCOMS). In addition to the MSRS, participants completed the HADS, which was used to categorize them into possible depression and anxiety groups using two criteria from the literature: ≥8 and ≥11. Receiver-operating-characteristic (ROC) curves were run to determine the MSRS total and subscale scores' classification accuracies, with optimal scores for detecting possible depression and anxiety cases determined using the Youden index. RESULTS: The MSRS total score's classification accuracy ranged between 86.2% and 92.2% for depression, with scores of 70 and 68 for the ≥8 and ≥11 criteria, respectively. For anxiety, the MSRS total score's classification accuracy ranged between 78.1% and 82.8%, with scores of 72 and 71 for the ≥8 and ≥11 criteria, respectively. The Emotional and Cognitive Strategies subscale had the strongest classification accuracy of all the subscales. CONCLUSIONS: The MSRS can be used to identify persons with MS experiencing mental health difficulties with relatively good classification accuracy, which may help clinicians to triage who needs additional assistance or support.

NARCOMS and Other Registries in Multiple Sclerosis: Issues and Insights.

Observational studies and registries can play a critical role in elucidating the natural and treated history of multiple sclerosis (MS) and identifying factors associated with outcomes such as disability and health-related quality of life. The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is one of multiple registries worldwide that focuses on people with MS, but one of the very few patient-driven MS registries. On the 25th anniversary of the first data collection for the NARCOMS Registry, we discuss the importance of disease registries in the MS field, describe key concepts related to registry design and management, and highlight findings from MS registries relevant to clinical care or health policy.

New applications for independent activities of daily living in measuring disability in multiple sclerosis.

BACKGROUND: Disability outcome measures in multiple sclerosis (MS) focus heavily on ambulation; however, limitations in performing everyday activities encompass another type of disability. OBJECTIVES: The aim of this study was to examine the ability of instrumental activities of daily living (IADL) scale to discriminate between different levels of disability and to predict disability progression. METHODS: The North American Research Committee on Multiple Sclerosis (NARCOMS) registry fall 2006 semi-annual survey asked participants to complete the RAND-12, Performance Scales, Patient Determined Disease Steps (PDDS), and IADL questionnaires. We modeled the trajectory of disability change, using the PDDS, over 12 years. Analyses used linear and repeated measures regression methods. RESULTS: Of respondents (n = 9931), 9559 (96%) completed the PDDS and IADL scale. Respondents were mostly female (76%), Caucasian (92%), and 52.3 (10.5) years old with moderate disability (median PDDS 4 (early cane)). Mean (SD) IADL total score was 20.5 (3.7). Discriminant ability of the IADL scale was higher than other measures considered at higher levels of disability. Adjusted longitudinal models showed that needing greater assistance on IADLs was independently predictive of trajectories of greater disability change. CONCLUSION: IADL scale had a greater ability to discriminate between higher disability levels than RAND-12 domains. The IADL scale may provide a useful and clinically relevant tool to measure disability in progressive MS populations.

The influence of trait mindfulness on depression in multiple sclerosis: potential implications for treatment.

PURPOSE: This study seeks to add to existing literature on depression and illness intrusiveness in chronic disorders by examining, (1) how the perceived intrusiveness of multiple sclerosis (MS) leads to depression, (2) and the mediating role trait mindfulness plays in this relationship METHODS: Participants (N = 755) were persons with MS (PwMS) recruited through the North American Research Committee on MS (NARCOMS) registry (a larger study). Participants completed the Illness Intrusiveness Ratings Scale, the Hospital Anxiety and Depression Scale and the Mindful Attention Awareness Scale. A mediation model assessed if trait mindfulness mediates the relationship between illness intrusiveness and depression RESULTS: Illness intrusiveness predicted trait mindfulness (a = - 4.54; p < .001), trait mindfulness predicted depression (b = - .04; p < .001); there was a direct effect of illness intrusiveness on depression (c' = 2.53; p < .001) and an indirect effect on depression (ab = .17, 95% BCa CI [.10, .25]) when trait mindfulness was in the model, which represented a medium size effect, R2med = .10 [95% CI .07, .14] CONCLUSION: Trait mindfulness mediates the relationship between illness intrusiveness and depression in PwMS. Providers could provide psychoeducation on the benefits of mindfulness and mindfulness-based interventions.

Gender identity and sexual orientation affect health care satisfaction, but not utilization, in persons with Multiple Sclerosis.

OBJECTIVE: We aimed to determine the association between gender identity and sexual orientation on health care utilization in persons with multiple sclerosis (MS), as well as satisfaction with their doctor and comfort discussing sexual health with their doctor. METHODS: We surveyed participants from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry regarding their gender identity and sexual orientation in 2017. Participants also reported their sociodemographic characteristics, disability status, health behaviors and health care utilization, including whether any hospitalizations or emergency room (ER) visits occurred or any disease-modifying therapy (DMT) was used within the last six months. We compared the likelihood of hospitalizations, ER visits and DMT use between (i) cisgender and transgender participants; and (ii) heterosexual, homosexual, and "other sexual orientation" participants using multivariable logistic regression models adjusting for potential confounding factors. RESULTS: Of the 5,604 eligible responders, 1168 (20.8%) reported their sex at birth as male and 4436 reported their sex at birth as female (79.2%). Twenty-five (0.45%) participants identified as transgender and 260 (4.6%) as non-heterosexual individuals. As compared to participants who reported their sexual orientation as heterosexual, non-heterosexual participants were younger, with an earlier age at MS symptom onset, more likely to have a post-secondary education, and more likely to be single. The frequency of any ER visits, any hospital admissions, and DMT use did not differ according to gender identity did not differ according to gender identity or sexual orientation. As compared to cisgender participants, transgender participants reported less comfort (p < 0.042) discussing sexual health with their doctor; findings were similar for non-heterosexual participants as compared to heterosexual participants. Participants reporting other sexual orientation also reported lower satisfaction (p < 0.039) with their doctor than other participants. CONCLUSION: Gender identity and sexual orientation were not associated with differences in healthcare utilization in persons with MS. However, health care experiences and satisfaction with care may be altered by gender identity and sexual orientation.

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

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.

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.

Functional gastrointestinal disorders negatively affect health-related quality of life in MS.

OBJECTIVE: To determine the prevalence of functional gastrointestinal disorders, the demographic and clinical characteristics associated with the presence of functional gastrointestinal disorders, and the effects of these disorders with health-related quality of life (HRQOL) in a large, diverse population of persons with MS. METHODS: In 2014, we surveyed participants in the North American Research Committee on Multiple Sclerosis registry regarding functional gastrointestinal disorders using the Rome III questionnaire. Participants also reported their sociodemographic characteristics, disability status using Patient Determined Disease Steps, the presence of comorbid depression and anxiety, health behaviors, and HRQOL using the RAND-12. We determined the prevalence of each gastrointestinal disorder using the Rome III criteria. Using multivariable logistic regression models, we assessed the factors associated with the presence of each bowel disorder. Using linear regression, we evaluated the association between functional gastrointestinal disorders and HRQOL. RESULTS: Of 6,312 eligible respondents, 76.5% were female, with a mean (SD) age of 58.3 (10.2) years. Forty-two percent of respondents (n = 2,647) had a functional gastrointestinal disorder, most often irritable bowel syndrome (IBS), which affected 28.2% of participants. The prevalence of all functional gastrointestinal disorders increased with greater disability, and the prevalence of IBS increased with longer disease duration. After adjusting for sociodemographic and clinical characteristics, functional gastrointestinal disorders were associated with lower physical and mental HRQOL (both p < 0.0001). CONCLUSIONS: Functional gastrointestinal disorders are common in MS and are associated with reduced HRQOL.

The association of fatigue and social participation in multiple sclerosis as assessed using two different instruments.

INTRODUCTION: Fatigue is an important aspect of health-related quality of life and a commonly reported symptom by many persons with multiple sclerosis (MS). There are multiple validated instruments available to assess fatigue in MS with differing benefits for each instrument. OBJECTIVE: We aimed to assess the relationship between the PROMIS Fatigue instrument and the Fatigue Performance Scale (FPS) in the NARCOMS registry. Additionally, we aimed to examine the association of fatigue with social participation. METHODS: The NARCOMS registry is a voluntary, self-report registry, which has enrolled participants with MS who provide semi-annual updates regarding their MS. The Fall 2016 semi-annual survey included the PROMIS Fatigue and Ability to Participate in Social Roles and Activities questionnaires, in addition to demographic and clinical information. We examined the association between instruments using Spearman correlations. Linear and ordinal regression models were used to evaluate associations with fatigue using the PROMIS Fatigue and the FPS. RESULTS: Of the 7,006 Fall 2016 respondents, 6,883 (98.2%) completed the PROMIS instruments. Respondents were mostly female (79.5%) and Caucasian (87.4%), had a mean (SD) age of 59.9 (10.2) years and moderate disability level (median Patient Determined Disease Steps [PDDS] 4 [early cane]). The mean (SD) PROMIS Fatigue T-score was 56.8 (11.0) and median (25th, 75th) FPS was 3 [moderate] (1 [minimal], 4 [severe]). Fatigue measures were strongly correlated (r = 0.83, 95% CI: [0.827, 0.842]). Factors consistently associated with fatigue were PDDS level, depression and pain functionality scales, and symptoms worsening. The ability to participate in social roles and activities was strongly associated with fatigue and had an independent effect on fatigue after adjusting for PDDS, depression and pain levels. CONCLUSION: A high proportion of respondents experience some level of fatigue and it is independently associated with reduced social participation.

A survey of risk tolerance to multiple sclerosis therapies.

OBJECTIVE: To determine tolerance to various risk scenarios associated with current multiple sclerosis (MS) therapies. METHODS: People 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). RESULTS: Both 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. CONCLUSION: People 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.

Validation of the SymptoMScreen with performance-based or clinician-assessed outcomes.

BACKGROUND: People with multiple sclerosis (MS) experience symptoms in multiple domains. High-quality patient-reported outcomes (PROs) that assess multiple domains can aid healthcare providers in assessing these symptoms and may support remote disease monitoring. The "SymptoMScreen" PRO correlates with other PROs in MS; however, whether the SymptoMScreen or its component domains are associated with performance-based or clinician-assessed outcomes is unknown. OBJECTIVES: To validate SymptoMScreen and its domains against performance-based, clinician-assessed measures or other well-validated diagnostic tools. METHODS: We recruited participants with MS from a large tertiary care center. At routine clinic visits participants completed the MS performance test (MSPT), which is an iPad-based application that objectively assesses walking speed, manual dexterity, processing speed, and low contrast letter acuity. Expanded Disability Status Scale (EDSS) scores were assessed in a subset. Participants also completed an online SymptoMScreen following clinic visits. We assessed criterion and construct validity by calculating Spearman rank correlations between the 12 SymptoMScreen domains and respective clinical outcomes. We evaluated test-retest reliability using intra-class correlation coefficients [ICC], and internal consistency reliability using Cronbach's alpha. RESULTS: The 102 participants were predominantly female (78%), of average age [standard deviation]: 47.6 [12.3] years, with an average disease duration: 13.1 [10.0] years); 60 participants completed the SymptoMScreen and EDSS. Composite SymptoMScreen scores were associated with EDSS (r = 0.71; 95% CI 0.54, 0.83). For individual domains, strong correlations were observed between mobility scores and walking speed (r = 0.63; 95% CI: 0.48, 0.75) and hand function scores with manual dexterity (r = 0.52; 95% CI: 0.36, 0.65). More moderate correlations were detected for the cognition domain with processing speed (r=-0.37; 95% CI: -0.53, -0.18) and for the visual function domain with low contrast letter acuity at 2.5% contrast (r=-0.33; 95% CI -0.54, -0.08). Both test-retest and internal consistency reliability measures for overall SymptoMScreen scores were high (ICC: 0.88; 95% CI: 0.80, 0.93; Cronbach's alpha: 0.93; 95% CI: 0.90, 96). CONCLUSIONS: The SymptoMScreen is practical outcome measure whose subscales may provide a valid assessment of corresponding performance-based and clinician-assessed measures among people with MS with mild-to-moderate disability.

Use of eHealth and mHealth technology by persons with multiple sclerosis.

BACKGROUND: Health 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. OBJECTIVE: We 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. METHODS: In 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. RESULTS: Of 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. CONCLUSION: Use 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.

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

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: These findings highlight the intrusiveness of MS on intimacy and sexual functioning, particularly among men. Potential clinical implications and future directions are discussed.

Pseudobulbar affect: Prevalence and association with symptoms in multiple sclerosis.

BACKGROUND: We sought to determine the prevalence of pseudobulbar affect (PBA) in a large MS population and assess its association with disability and symptom severity. METHODS: North American Research Committee on MS (NARCOMS) registry participants completed the Center for Neurologic Study-Lability Scale (CNS-LS), a validated 7-question self-report measure of PBA. A composite PBA score was derived from the sum of responses to the 7 questions. We categorized individuals as PBA-positive (PBA[+]) if they had a composite score ≥17 without current depression. Participants also reported their demographic characteristics and their clinical characteristics using Patient-Determined Disease Steps and Performance Scales. We compared clinical and disease characteristics for PBA(+) responders with those without PBA using descriptive statistics and multivariable multinomial logistic regression. RESULTS: Of the 8,136 responders, 574 (7%) had scores ≥17 on the CNS-LS; however, only 200 (2.5%) individuals had scores ≥17 without comorbid depression, of whom only 22 (11%) reported a diagnosis of PBA. PBA(+) individuals tended to be younger (mean [SD] 53.4 [11.0] vs 57.2 [10.3] years), non-white (13% vs 9%), and have lower socioeconomic status (≤$30,000 annual income: 28% vs 22%). In multivariable models, PBA(+) was associated with increased odds of more severe cognitive impairment (moderate vs mild disability OR: 1.37; 95% CI: 1.01, 1.84). CONCLUSIONS: Our findings suggest that the prevalence of PBA in MS is low, but similar symptoms may co-occur or overlap with depression, highlighting the importance of concomitant assessment of mood when evaluating potential PBA. PBA may be associated with cognitive impairment in people with MS.

Development of the Multiple Sclerosis Resiliency Scale (MSRS).

OBJECTIVES: 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. METHOD: 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. RESULTS: 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. IMPLICATIONS: 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

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

INTRODUCTION: Dietary 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). METHODS: We 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. RESULTS: Among 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). CONCLUSIONS: In 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.

OBJECTIVE: The objective of this study was to examine the sociodemographic, clinical, and behavioral factors associated with excessive sitting time in persons with multiple sclerosis (MS). METHODS: Useful 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. RESULTS: The 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. CONCLUSION: This 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.

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

RATIONALE: People 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. OBJECTIVES: The aim of this study was to assess, concurrently and prospectively, the association between stigma and depression in people living with MS. METHODS: Data 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. RESULTS: People 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. CONCLUSIONS: Stigma is an important but understudied predictor of depression in people living with MS, but greater psychosocial reserve provides a buffer.

A contemporary profile of primary progressive multiple sclerosis participants from the NARCOMS Registry.

BACKGROUND: Primary progressive multiple sclerosis (PPMS) represents 10%-15% of all multiple sclerosis (MS) diagnoses. Information regarding socio-demographic and clinical characteristics of persons with PPMS is limited. OBJECTIVE: To characterize persons with PPMS in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. METHODS: We compared demographic and health-related characteristics of NARCOMS Registry participants reporting PPMS in the spring 2015 update survey with those reporting relapsing-remitting multiple sclerosis (RRMS) and secondary progressive multiple sclerosis (SPMS), with characteristics of published PPMS cohorts. RESULTS: Of 8004 responders, 6774 self-reported a clinical course of PPMS, SPMS, or RRMS. The PPMS cohort ( n = 632, 9.3%) reported a mean (standard deviation (SD)) age of 64.3 (8.9) years; 62.7% were female; the SPMS and RRMS cohorts were younger and had a higher proportion of females. The NARCOMS PPMS cohort differed in age, time from onset and diagnosis, and proportion of females compared to population-based and clinical trial cohorts. Median (25%, 75%) number of comorbidities was 2 (1, 2) for each cohort with vascular comorbidities being most frequently reported. CONCLUSION: The NARCOMS population provides a different perspective on persons with PPMS than clinical trials. A better understanding of the characteristics of persons with PPMS may help address unmet needs in this population.

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

BACKGROUND: Bladder, 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. METHODS: In 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. RESULTS: Of 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. CONCLUSION: Bladder, 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.