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Purpose: The ways in which words are used to describe and discuss people with disabilities has long been an area of social concern. Previous research has demonstrated that language can overtly and subtly influence cognitions and perceptions of individuals, but there is less research on how language relates to perceptions of individuals with disabilities. Materials and methods: A content analysis of 236 peer-reviewed articles was performed to explore differences in the frequency of the use of "disability," "disorder," and "illness" in academic articles related to eight common conditions: deafness, blindness, multiple sclerosis, quadriplegia, anxiety, depression, schizophrenia, and addiction. Results: Results indicated that there were differences in how disability language was used by academic writers. Specifically, "disability" appeared in the writing more frequently in articles related to physical disabilities, "disorder" appeared most frequently in articles related to anxiety and depression, and "illness" appeared most frequently in articles related to schizophrenia. Conclusions: This observed difference in frequency use could reflect differences in the context and meaning of the use of these conditions. Suggestions for future research are discussed. IMPLICATIONS FOR REHABILITATION: The way individuals write and talk about conditions may indicate the way they think about the conditions. When compared to articles written about physical conditions, the term "disability" is used less by academic writers than when discussing mental conditions. This suggests that academic writers may view mental conditions as less "prototypical" disabilities (compared to physical conditions). Careful consideration should be given to the language used when discussing all types of disabilities. When writers, media professionals, policymakers, and the public are educated on the diverse range of conditions and the unique challenges they present to individuals, only then can rehabilitation be truly comprehensive and effective. [ABSTRACT FROM AUTHOR]

People with multiple sclerosis (MS) often have to cope with high levels of stress. Lazarus and Folkman's (1984) stress–appraisal–coping theory emphasizes the relationship between the individual and the environment, suggesting that a stress response is highly influenced by individual appraisal processes. This study aimed to evaluate constructs of Lazarus and Folkman's stress–appraisal–coping theory and positive human traits as predictors of perceived stress in a sample of 477 adults with MS. Hierarchical regression analysis was used to determine the incremental variance in perceived stress accounted for by demographic covariates, functional disabilities, challenge appraisal, and positive human traits. Core self-evaluations, challenge appraisal, limitations in social/cognitive functioning, agency hope, and age were significant predictors in the final model, accounting for 68% of the variance in perceived stress scores (R 2 =.68, f 2 = 2.13; large effect size). Core self-evaluations and challenge appraisal were the strongest predictors of perceived stress. The findings from this study will help rehabilitation professionals develop empirically supported stress management and well-being interventions, enabling people with MS to cope effectively with stressors and challenges and improve their health and well-being. [ABSTRACT FROM AUTHOR]

The treatment landscape for multiple sclerosis has dramatically grown in terms of available options and complexity. The various mechanisms of action and safety profiles of these new treatments necessitate that primary care providers remain current in knowledge and practice to provide high-quality care. [ABSTRACT FROM AUTHOR]

Multiple sclerosis (MS) is characterized by progressive neuroinflammation and neurodegeneration from disease onset that, if left untreated, can result in the accumulation of irreversible neurological disability. Early intervention with high-efficacy therapies (HETs) is increasingly recognized as the best strategy to delay or mitigate disease progression from the earliest stages of the disease and to prevent long-term neurodegeneration. Although there is growing clinical and real-world evidence supporting early HET intervention, foregoing this strategy in favor of a traditional escalation approach prioritizing lower-efficacy disease-modifying therapies remains a common approach in clinical practice. This review explores potential health care professional- and patient-related barriers to the early use of HETs in patients with MS in the United States. Barriers can include regulatory and reimbursement restrictions; knowledge gaps and long-term safety concerns among health care professionals; and various individual, cultural, and societal factors affecting patients. Potential strategies for overcoming these barriers and encouraging early HET use are proposed. [ABSTRACT FROM AUTHOR]

BACKGROUND: Genetic susceptibility to chemicals is incompletely characterized. However, nervous system disease development following pesticide exposure can vary in a population, implying some individuals may have higher genetic susceptibility to pesticide-induced nervous system disease. OBJECTIVES: We aimed to build a computational approach to characterize single-nucleotide polymorphisms (SNPs) implicated in chemically induced adverse outcomes and used this framework to assess the link between differential population susceptibility to pesticides and human nervous system disease. METHODS: We integrated publicly available datasets of Chemical–Gene, Gene–Pathway, and SNP–Disease associations to build Chemical–Pathway– Gene–SNP–Disease linkages for humans. As a case study, we integrated these linkages with spatialized pesticide application data for the US from 1992 to 2018 and spatialized nervous system disease rates for 2018. Through this, we characterized SNPs that may be important in states with high disease occurrence based on the pesticides used there. RESULTS: We found that the number of SNP hits per pesticide in US states positively correlated with disease incidence and prevalence for Alzheimer’s disease, Parkinson disease, and multiple sclerosis. We performed frequent itemset mining to differentiate pesticides used over time in states with high and low disease occurrence and found that only 19% of pesticide sets overlapped between 10 states with high disease occurrence and 10 states with low disease occurrence rates, and more SNPs were implicated in pathways in high disease occurrence states. Through a crossvalidation of subsets of five high and low disease occurrence states, we characterized SNPs, genes, pathways, and pesticides more frequently implicated in high disease occurrence states. DISCUSSION: Our findings support that pesticides contribute to nervous system disease, and we developed priority lists of SNPs, pesticides, and pathways for further study. This data-driven approach can be adapted to other chemicals, diseases, and locations to characterize differential population susceptibility to chemical exposures. [ABSTRACT FROM AUTHOR]

Background: In the United States, health insurance coverage and quality mediate access to health care, a key social determinant of health. Objective: To perform a scoping review regarding the impact of insurance coverage and benefit design on health care access and both clinical and quality of life outcomes in people with MS (pwMS). Methods: Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines were followed. A literature search was conducted from January 2010 to February 2022. Included studies were in English, peer-reviewed, US-based, and evaluated elements of insurance and their relationship with access and quality outcomes for adult pwMS. Results: Our search identified 1619 articles, of which 32 met inclusion criteria. Privately insured pwMS were more likely to be on disease-modifying therapy (DMT). Increased out-of-pocket spending was associated with lower DMT adherence and greater discontinuation rates. Access to specialty pharmacy programs was associated with improved DMT adherence. Conclusion: Health insurance coverage and design strongly influences health care for pwMS in the United States and may be a modifiable social determinant of health. Increased pharmaceutical cost-sharing is associated with declines in DMT utilization and adherence. Further study is needed to better characterize the impacts of other core elements of health insurance, including prior authorization requirements and step therapy. [ABSTRACT FROM AUTHOR]

Background: A scoping review found that most studies on women's health in multiple sclerosis (MS) focused on pregnancy, fetal/neonatal outcomes and sexual dysfunction. Few studies addressed menopause, contraception, gynecologic cancers/cancer screening. However, the perceived relative importance of these knowledge gaps to people living with MS and other partners is unknown. We engaged a range of partners, including people living with MS, health care providers, researchers, and patient advocacy groups, to set priorities for future research in women's health in MS. Methods: We employed a three-step global engagement process. First, we identified which broad research topics relevant to women's health in MS were of highest priority using two surveys. Second, we developed specific research questions within these topics using focus groups. Finally, we prioritized the research questions with a third survey. Results: Overall, 5,266 individuals responded to the initial surveys [n = 1,430 global survey, mean (SD) age 50.0 (12.6), all continents; n = 3,836 North American Research Committee on Multiple Sclerosis survey, mean (SD) age 64.8 (9.6), United States]. Menopause, sexual dysfunction, pregnancy, gynecologic cancer/cancer screening, hormones and parenthood were identified as the most important topics. Focus groups generated 80 potential research questions related to these topics. In the final survey 712 individuals prioritized these questions. The highest priority questions in each research topic were: (i) How do perimenopause and menopause affect disease activity, course, response to disease-modifying treatment and quality of life in MS; (ii) What are the most effective strategies for managing issues around sexual intimacy, including related to low sexual desire, changes in physical function, and MS symptoms; (iii) Are there long-term effects of disease-modifying therapies on the children of persons with MS; (iv) What are the short and long-term effects of disease-modifying drugs on gynecologic cancer risk, particularly for high efficacy disease-modifying drugs and hematopoietic stem cell transplantation; (v) Are there hormone related treatments that can stabilize fluctuations in MS symptoms; and (vi) How does MS fatigue impact parenting strategies. Conclusion: Priorities for research relating to women's health issues for persons with MS have been delineated using a collaborative process with key partners. Alignment of future research with these priorities should be monitored. [ABSTRACT FROM AUTHOR]

People with multiple sclerosis (MS) must often cope with a high level of stress. Lazarus and Folkman's (1984) stress-appraisal-coping theory described the importance of stress appraisals to determine which behavioral responses and coping strategies an individual draws upon following stressful events. One of the most highly validated stress appraisal measures is the Stress Appraisal Measure (SAM ; Peacock and Wong, 1990), which was primarily developed as a dispositional measure, SAM-Revised (SAM-R : Roesch and Rowley, 2005). However, it has not been validated in adults with MS. The purpose of this study was to confirm the measurement structure and psychometric properties of the SAM-R with a sample of adults with MS. A confirmatory factor analysis (CFA) was used to examine the factor structure of SAM-R in 477 adults with MS. CFA confirmed the three-factor structure: χ 2/ df = 3.94 (less than 5), comparative fit index =.95 (higher than.90), root mean square error of approximation = 0.079 (90% confidence interval [0.070, 0.087]; less than.08), and the standardized root mean square residual =.046 (less than.08). The three factors include (a) challenge appraisal, (b) threat appraisal, and (c) centrality appraisal. Correlations among these three factors and external measures of related concepts provided evidence of the validity of these factors. The SAM-R is a psychometrically validated measure that can be incorporated in rehabilitation counseling, mental health, and healthcare settings to assess the stress appraisal style. Rehabilitation and health professionals can use it to evaluate the effectiveness of psychosocial interventions in helping people with MS to manage stressful life events and improve their mental health. [ABSTRACT FROM AUTHOR]

Purpose: Multiple sclerosis (MS) is a neurological disease that is chronic, progressive characterized by symptoms of relapsing fatigue and pain. Despite evidence supporting the use of physical activity (PA) for MS symptom management, low rates of PA participation are observed. Previous research suggests exercise-related cognitive errors (ECEs) can deter and decrease PA participation. The purpose of this study was to examine whether ECEs and self-regulatory efficacy for MS symptom control predict important behavior-related outcomes for MS self-management (dependent variables: PA, maladaptive behavioral responses to illness, and perceived walking impairment). Method: Adults with MS (N = 110; aged 18 and over, with a patient-determined disease steps score of six or less) completed the following validated questionnaires: ECEs, MS symptom control self-efficacy, self-report moderate to vigorous physical activity, behavioral responses to illness, and perceived walking impairment. Results: ECEs significantly predicted behavioral responses to illness (β =.459, p <.01) and perceived walking impairment (β =.279, p <.01). The interaction between ECEs and self-regulatory efficacy significantly predicted all three dependent variables (βs ranged from.155 to.263, ps <.05). Conclusion: This is the first study to demonstrate associations between ECEs and different illness- and mobility-related perceptions for persons with MS. Findings suggested that self-regulatory efficacy to manage MS symptoms varied based on low, moderate, or high levels of ECEs. Disability status is not easily modifiable; targeting social cognitions, like self-regulatory efficacy or ECEs, may be a promising way to promote PA for MS self-management. Impact and Implications: This study demonstrated that exercise-related cognitive errors (ECEs) predicted and interacted with symptom control self-regulatory efficacy to predict activity-related cognitions important for successful symptom management for individuals with multiple sclerosis. The biased lens associated with ECEs may make it more difficult to regulate physical activity (PA) and individuals who make cognitive errors might need high confidence to manage their symptoms. Modifying social cognitions, like self-regulatory efficacy or cognitive errors, may be one way to promote PA for symptom self-management. [ABSTRACT FROM AUTHOR]

Multiple sclerosis (MS) can affect people from all racial and ethnic backgrounds, but, historically, the incidence of MS in the United States was thought to be highest in White individuals. More recent data suggest that the incidence of MS in Black or African American individuals is comparable to that in White individuals. In Hispanic or Latino individuals, incidence of MS is lower, but age of onset may be earlier compared with White individuals. Additionally, there are important differences in MS disease severity, disease progression, and mortality in Black or African American and Hispanic or Latino populations. Compared with their White counterparts, individuals from these underrepresented groups are more likely to be affected by MS in specific areas of the nervous system, such as accelerated loss of retinal and brain tissue in Black or African American individuals and optic neuritis in Hispanic individuals. Additionally, Black or African American individuals with MS tend to have an aggressive disease course, earlier disability, and higher risk of requiring ambulatory assistance. Although these differences may be attributed to genetic factors, systemic racism and biases and barriers to accessing care may perpetuate health disparities. Moreover, non-White communities remain broadly underrepresented in clinical trials; however, it is vital that these populations are appropriately represented so that any potential differences in drug efficacy or safety implications are detected. Thus, it is important to increase awareness of MS in these populations. In this podcast, the authors discuss characteristics of MS in Black or African American and Hispanic or Latino populations, identify barriers to care, and propose solutions to improve access to MS care in these populations. EFHusNe1ZfxXq5MHcHBau1 MP4 (358385 KB) [ABSTRACT FROM AUTHOR]

OBJECTIVES: Few studies have evaluated racial and ethnic differences in several immune-mediated inflammatory diseases (IMIDs) or overlap syndrome (the co-occurrence of ≥ 2 IMIDs). We assessed associations between race and ethnicity and prevalence of IMIDs and overlap syndrome using US claims and electronic health records from 2021. STUDY DESIGN: Retrospective cohort study of 10.8 million adults. METHODS: We identified the 10 most prevalent IMIDs among frequently discussed IMIDs. We estimated associations between the 5 most prevalent IMIDs and overlap syndrome in Hispanic and non-Hispanic Asian and Black adults using non-Hispanic White adults as the referent and stratifying by sex and age (20-39, 40-59, and ≥ 60 years). RESULTS: Inflammatory bowel disease (IBD), systemic lupus erythematosus (SLE), multiple sclerosis (MS), and rheumatoid arthritis (RA) were the most prevalent IMIDs in all races and ethnicities. We observed positive associations (P < .0001) between Hispanic and non-Hispanic Black adults and SLE, Asian women of all ages and Asian men younger than 60 years and SLE, Black women younger than 60 years and MS, and Hispanic and non-White women 60 years or older and RA. Hispanic and non-White adults of all age groups had inverse associations (P < .0001) with IBD. Non-Hispanic Black adults of all ages and Hispanic and non-Hispanic Asian women 40 years or older had inverse associations (P < .0001) with psoriasis/psoriatic arthritis. Overlap syndrome was rare among all groups, with some variation in which IMIDs co-occurred. CONCLUSIONS: We found racial and ethnic differences in the prevalence and co-occurrence of IMIDs in this sample of US adults. Because misdiagnoses are relatively frequent for patients with IMIDs, awareness of racial and ethnic variations in IMIDs could aid early diagnosis and improve disease management. [ABSTRACT FROM AUTHOR]

Introduction: Multiple sclerosis (MS) is a neurodegenerative disease characterized by progressive deterioration of cognitive and physical functioning, reducing activities of daily living and quality of life (QoL). Several treatments are available that modify the course of the disease and reduce the frequency of relapses. Although effective, all treatment options are accompanied by adverse events, and this study aimed to assess the extent to which patients were involved in the choice of treatment.Methods: Data were drawn from the Adelphi Multiple Sclerosis Disease Specific Program (DSP)™, a cross-sectional survey of healthcare practitioners (HCP) and their patients with MS in real-world clinical settings in Europe and the United States (US) between December 2020 and July 2021. HCPs reported patient demographics, clinical characteristics, current and previous treatment, and treatment outcomes. Patients voluntarily completed questionnaires reporting the physical and psychological impact of their MS and its treatment. Regression analysis with inverse probability of treatment weighting was used to compare treatment outcomes in patients actively involved in their current treatment choice with those who were not.Results: Of a total of 692 patients, median age 40 years and 64% female, mostly diagnosed with relapsing-remitting MS, those who were involved in shared decision-making tended to choose oral therapies such as dimethyl fumarate more often than HCPs. MS had greater impact on physical and psychological functioning in patients whose HCP made treatment decisions solely. Patients involved in decision-making reported greater satisfaction with their treatment and a better QoL.Discussion: Because no single optimal therapy exists for patients with MS, treatments should be individualized with consideration of patients' preferences. Our study shows that shared decision-making is under-utilized in the management of MS and supports the benefits of patient involvement.Conclusion: Patients who have an active role in treatment decision-making show improved wellbeing and QoL, and overall treatment satisfaction.Plain Language Summary: Multiple sclerosis (MS) is a disease that affects the brain, causing symptoms such as blurred vision and problems with movements, thoughts, and feelings. MS is a lifelong condition that becomes worse over time and limits the activities that people can do. There are many treatments that can help to reduce relapses (when symptoms become worse), but all have their benefits and drawbacks. It is often the physician who decides which treatment to use, but we wanted to know if patients would feel better if they were involved in the decision.Using our standardized and validated questionnaires, we surveyed physicians and nurses who treat patients with MS in Europe and the United States of America between December 2020 and July 2021, to assess how they felt about the treatment they chose and its effect on the patient. We also asked the patients themselves how they felt about their illness and treatment, whether they were given the chance to choose which treatment to take, and how their treatment affected their symptoms and overall quality of life.The information provided by both the physicians and their patients was used to compare how patients responded when they were involved in the treatment decisions. We found that patients who were involved in choosing their treatment were more satisfied with their treatment and responded better than those whose physicians decided alone. Therefore, it is important for physicians treating patients with MS to consider their patients' preferences when deciding which treatment is best for them. [ABSTRACT FROM AUTHOR]

Importance: Spiritual well-being is an important aspect of health-related quality of life for persons with chronic illnesses such as multiple sclerosis (MS), yet research on interventions remains limited. Objective: To assess the feasibility of an occupational therapy intervention addressing the spiritual well-being of people with MS. Design: Mixed-methods program evaluation using theoretical thematic analysis of qualitative data. Setting: Community center serving people with MS in a midwestern U.S. city. Participants: A total of 42 participants attended at least one session; 22 participants provided qualitative data. Ten met the inclusion criteria for quantitative analysis, including completion of pretest and posttest measures and attendance of at least half of the sessions. Intervention: Making Meaning, a group intervention based on the Model of Occupational Wholeness, was conducted over eight weekly 45-min sessions. The focus was on exploring and integrating spiritual practices into daily life. Outcomes and Measures: Participants completed the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being 12-Item Scale (FACIT–Sp–12) to measure spiritual well-being and answered open-ended questions. Attendance was recorded and the facilitator and observers provided qualitative observations. Results: Pretest–posttest comparisons of FACIT–Sp–12 scores indicated a moderate improvement in spiritual well-being (d = 0.41). Attendance and qualitative data supported the intervention's feasibility and suggested areas for refinement. Conclusions and Relevance: Making Meaning is a feasible intervention, showing promise for promoting spiritual well-being for people with MS. Further research is warranted. Plain-Language Summary: This study introduces a practical and acceptable occupational therapy group intervention, Making Meaning, which shows promising potential for improving the spiritual well-being of people with multiple sclerosis. Making Meaning is a group intervention that shows promise for improving spiritual well-being for people with multiple sclerosis. [ABSTRACT FROM AUTHOR]

BACKGROUND: We previously reported more rapid accrual of ambulatory impairments in Black compared to White individuals with relapsing remitting multiple sclerosis (RRMS) and higher body mass index (BMI). Hypertension and lower neighborhood socioeconomic status (SES) were associated with greater impairment, irrespective of race. We hypothesize that these common social and health inequities may explain a substantial portion of the racial differences in ambulation in American individuals with RRMS. METHODS: Causal mediation analyses investigated baseline and change-over-time mediators of ambulatory impairment differences between 1795 Black and White individuals with RRMS using a retrospective cohort study comprised of electronic health record data from 8491 clinical encounters between 2008 and 2015 where Timed 25-Foot Walk (T25FW) speeds without assistive devices were recorded. The hypothesis was that BMI, neighborhood SES, and hypertension were possible mediators. RESULTS: At baseline, Black individuals with RRMS (n = 175) had significantly slower T25FW speeds (5.78 vs 5.27 ft/s), higher BMI, a higher prevalence of hypertension, and they were more likely to live in lower-income neighborhoods than White individuals (n = 1,620). At baseline, a significant proportion (33.7%; 95% CI, 18.9%-59.4%) of the T25FW difference between Black and White individuals was indirectly due to a higher BMI (12.5%), hypertension burden (9.5%), and living in lower-income neighborhoods (11.2%). Once baseline mediation relationships were accounted for, there were no significant longitudinal mediation relationships. CONCLUSIONS: The findings implicate social and health disparities as prominent drivers of ambulatory differences between Black and White individuals with RRMS, suggesting that wellness and health promotion are essential components of MS care, particularly for Black individuals. [ABSTRACT FROM AUTHOR]

BACKGROUND: The medical system in the United States has been riddled with insurance restrictions used by insurance companies to limit health care costs. The effects of insurance restrictions on patients receiving disease-modifying therapies for multiple sclerosis (MS) have not been specifically studied. METHODS: A retrospective cross-sectional study of 52 individuals recently diagnosed with MS at a tertiary neurology clinic was conducted to measure the association between prior authorization (PA) duration and other variables of interest. The Cox proportional hazards model was used to determine likelihood of approval. Further analysis included multivariable logistic regression to assess the influence of variables of interest on the initial decision from the insurance company and the effect of the PA on disease activity. RESULTS: Of 52 PAs, 50% were initially denied. An initial denial decreased the likelihood of approval by 98% (HR, 0.02; 95% CI, <0.01-0.09; P < .001). The odds of denial for oral medications (odds ratio [OR], 4.91; 95% CI, 1.33-21.52; P = .02) and infusions (OR, 8.35; 95% CI, 1.10-88.77; P = .05) were significantly higher than for injections. Medicaid had higher odds of denial compared with commercial insurance (OR, 4.51; 95% CI, 1.13-22.01; P = .04). An initial denial by insurance significantly increased the likelihood of disease activity (OR, 6.18; 95% CI, 1.33-44.86; P = .03). CONCLUSIONS: Insurance restrictions delay necessary treatments, increase the likelihood of disease activity, and rarely change the approved disease-modifying therapy. Reducing PAs may lead to improved outcomes for patients with MS. [ABSTRACT FROM AUTHOR]

Introduction: Much of the current literature on treatment patterns and disability progression in multiple sclerosis (MS) does not distinguish between the relapsing–remitting and progressive subtypes (including primary [PPMS] and secondary progressive MS [SPMS]), or between active/nonactive disease. Current treatment options for progressive MS are limited, with only one approved product for PPMS and none specifically for nonactive SPMS. Here we report treatment patterns, disability progression, and unmet needs among patients with active and nonactive PPMS and SPMS. Methods: The annual, cross-sectional survey from the Adelphi Disease Specific Program was used to collect physician-reported data on US adult patients with PPMS and SPMS, including active and nonactive disease. Treatment patterns (including the proportion of patients who were untreated with a disease-modifying therapy [DMT]), disability progression, and unmet need are described from 2016 to 2021. Results: Data were collected for 2067 patients with progressive MS (PPMS, 1583; SPMS, 484). A substantial proportion of patients were untreated across all groups, and this was highest for nonactive PPMS (~ 43%). The proportion of untreated patients generally declined over time but remained high in 2018–2021 (~ 10–38%). Among treated patients, the proportion receiving infusions increased over time to ~ 34–46%, largely driven by ocrelizumab use after approval. Disability progression was reported for most patients (> 50%), including many who were receiving a DMT. Across all disease subtypes, when physicians were asked about the greatest unmet need with current DMTs, they most frequently cited effectiveness (~ 63–87%), and specifically slowing disease progression (~ 32–59%). Conclusions: This analysis of physician-reported data reveals that patients with progressive MS, particularly those with nonactive disease, frequently remain untreated or continue to decline despite treatment with available DMTs. Thus there is an enduring need for safe and effective treatments for this underserved population. [ABSTRACT FROM AUTHOR]

Background: Non-Hispanic Black and Hispanic persons with MS (pwMS) are more likely to experience rapid disease progression and severe disability than non-Hispanic White pwMS; however, it is unknown how the initiation of high-efficacy disease-modifying therapies (DMTs) differs by race/ethnicity. This real-world study describes DMT treatment patterns in newly diagnosed pwMS in the United States (US) overall and by race/ethnicity. Methods: This retrospective analysis used the US Optum Market Clarity claims/electronic health records database (January 2015–September 2020). pwMS who were first diagnosed in 2016 or later and initiated any DMT in the two years following diagnosis were included. Continuous enrollment in the claims data for ≥ 12 months before and ≥ 24 months after diagnosis was required. Treatment patterns 2 years after diagnosis were analyzed descriptively overall and by race/ethnicity. Results: The sample included 682 newly diagnosed and treated pwMS (non-Hispanic Black, n = 99; non-Hispanic White, n = 479; Hispanic, n = 35; other/unknown race/ethnicity, n = 69). The mean time from diagnosis to DMT initiation was 4.9 months in all pwMS. Glatiramer acetate and dimethyl fumarate were the most common first-line DMTs in non-Hispanic Black (28% and 20% respectively) and Hispanic pwMS (31%, 29%); however, glatiramer acetate and ocrelizumab were the most common in non-Hispanic White pwMS (33%, 18%). Use of first-line high-efficacy DMTs was limited across all race/ethnicity subgroups (11-29%), but uptake increased in non-Hispanic Black and White pwMS over the study period. Conclusion: Use of high-efficacy DMTs was low across all race/ethnicity subgroups of newly diagnosed pwMS in the US, including populations at a greater risk of experiencing rapid disease progression and severe disability. [ABSTRACT FROM AUTHOR]

Purpose This study evaluated patient-reported outcomes (PROs) and pharmacist actions for patients on disease-modifying therapies (DMTs) for multiple sclerosis (MS) through health-system specialty pharmacies (HSSPs). Methods A multisite, prospective cohort study of patients utilizing an HSSP for DMT fulfillment was performed. Primary outcomes were affirmative answers to PRO questions regarding impacted productivity, hospitalization, and relapse and pharmacist actions. Rates of pharmacist actions were reported as the number of person-years of treatment per action. Univariate and multivariate logistic regression were used to evaluate the association between each PRO and covariates, including the number of pharmacist actions performed, age, sex, insurance, site, and route of administration. Results The 968 patients included had 10,562 fills and 6,946 PRO assessments. The most common affirmative PRO was impacted productivity (14.6%). Pharmacists performed 3,683 actions, most commonly general medication education (42.6%) and safety (33.3%). Rates of general medication education and nonfinancial coordination of care actions were similar across medication classes; other pharmacist actions varied by medication class. Insurance type was significantly associated with reporting impacted productivity; patients with Medicare and Medicaid were 2.2 and 3.1 times more likely to have reported impacted productivity, respectively (P < 0.001) than commercially insured patients. Patients who reported impacted productivity had more pharmacist actions (P < 0.001). Conclusion Patients on DMTs through an HSSP reported low rates of impacted productivity, relapse, and hospitalization due to MS, although patients with noncommercial insurance were more likely to have impacted productivity. Patients reporting impacted productivity and those taking certain DMTs may require more frequent pharmacist actions. [ABSTRACT FROM AUTHOR]

Multiple sclerosis (MS) is a chronic, immune-mediated, neurodegenerative condition of the central nervous system, with distinct challenges due to its heterogeneous presentation, prognostic uncertainty, and variable clinical course of neurological and non-neurological symptoms and disability. Although there have been significant advances in management of MS, many patients experience disability progression. Despite MS being a frequent cause of neurological disability, particularly in young persons, involvement of palliative care physicians in the care of patients with MS has been limited. This article provides ten tips for palliative clinicians for caring for patients with MS and their care partners. [ABSTRACT FROM AUTHOR]

Ublituximab (BRIUMVITM), an anti-CD20 immunoglobulin G1 monoclonal antibody, is a promising new treatment option for patients with relapsing forms of multiple sclerosis (MS). Ublituximab is approved in the USA and the EU for the treatment of adult patients with relapsing forms of MS. Following a starting dose of 150 mg infused over 4 h, ublituximab is conveniently administered twice-yearly as a short (1 h) intravenous infusion. In phase 3 clinical trials in patients with relapsing MS, ublituximab was more effective than oral teriflunomide at reducing annualized relapse rates and numbers of brain lesions over a period of 96 weeks. However, ublituximab did not result in a significantly lower risk of worsening of disability. Ublituximab had an acceptable tolerability profile in clinical trials. The most commonly reported adverse events were infusion-related reactions (IRRs), which occurred in almost half of ublituximab recipients. However, the majority of IRRs were of mild to moderate severity, occurred after the first dose and decreased in frequency with subsequent dosing. Plain language summary: Multiple sclerosis (MS) is a chronic illness whereby the body's immune system causes damage to the brain and spinal cord. Most patients with MS have a relapsing-remitting form of the disease, where symptoms flare for a period of time and then ease. Ublituximab (BRIUMVITM) is a monoclonal antibody approved for treating adults with relapsing forms of MS. Of convenience to patients, ublituximab is given intravenously once every 6 months after initial dosing and can be infused rapidly (over 1 h). In clinical trials, ublituximab recipients were half as likely to have a relapse and had fewer areas of inflammation in the brain than patients receiving oral teriflunomide. However, ublituximab did not significantly reduce the risk of worsening disability. Ublituximab had an acceptable safety profile in clinical trials. Nearly half of patients receiving ublituximab had mild to moderate infusion-related reactions that became less frequent with later infusions. Thus, ublituximab is a promising new treatment option for patients with relapsing forms of MS. [ABSTRACT FROM AUTHOR]

The uptake and benefits of the Canadian Physical Activity Guidelines for Adults with Multiple Sclerosis (PAGs) have been validated, but there is limited understanding regarding the knowledge, needs, and preferences of people with multiple sclerosis (MS) for implementing the PAGs outside of clinical research. The authors conducted online, semistructured interviews with 40 persons with MS from across the United States seeking information on awareness of and potential approaches for increasing the uptake of the PAGs. They identified first impressions and potential approaches for increasing the uptake of the PAGs through inductive, semantic thematic analysis. Participants perceived the PAGs as a good introduction for structured exercise but desired more information on how to meet the PAGs. Participants further believed that modifying the PAGs for inclusivity and applying a multifaceted approach for dissemination and implementation may increase uptake of exercise behavior. Physical activity research in MS should include both analyzing the effects of exercise and the unique challenges faced by persons with MS in putting the PAGs into practice. [ABSTRACT FROM AUTHOR]

Although research has examined the relationship between stress and life satisfaction for individuals with multiple sclerosis (MS), less is known about the mechanism through which disability-related stress affects life satisfaction. The purpose of the study was to examine the intermediary role of optimism and mental health in the relationship between disability-related stress and life satisfaction in people with MS. In this cross-sectional study, the sample consisted of U.S. 373 adults with MS (mean age = 47.77 years; SD = 11.70). Descriptive statistics, correlation analyses, and a serial mediation analysis were conducted in this study. Our findings suggested that disability-related stress was inversely associated with optimism, mental health, and life satisfaction. Optimism was positively associated with mental health and life satisfaction. Mental health was positively associated with life satisfaction. The serial mediation analysis results suggested that disability-related stress was negatively associated with life satisfaction through optimism and mental health. Our findings provided implications for clinicians to facilitate optimism and mental health promotion for people with MS. [ABSTRACT FROM AUTHOR]

Background: Misdiagnosis of multiple sclerosis (MS) is common and can have harmful effects on patients and healthcare systems. Identification of factors associated with misdiagnosis may aid development of prevention strategies. Objective: To identify clinical and radiological predictors of MS misdiagnosis. Methods: We retrospectively reviewed medical records of all patients who were referred to Johns Hopkins MS Center from January 2018 to June 2019. Patients who carried a diagnosis of MS were classified as correctly diagnosed or misdiagnosed with MS by the Johns Hopkins clinician. Demographics, clinical, laboratory, and radiologic data were collected. Differences between the two groups were evaluated, and a regression model was constructed to identify predictors of misdiagnosis. Results: Out of 338 patients who were previously diagnosed with MS, 41 (12%) had been misdiagnosed. An alternative diagnosis was confirmed in 28 (68%) of the misdiagnosed patients; cerebrovascular disease was the most common alternate diagnosis. Characteristics associated with misdiagnosis were female sex (odds ratio (OR): 5.81 (95% confidence interval (CI): 1.60, 21.05)) and non-specific brain magnetic resonance imaging (MRI) lesions (OR: 7.66 (3.42, 17.16)). Conclusion: Misdiagnosis is a frequent problem in MS care. Non-specific brain lesions were the most significant predictor of misdiagnosis. Interventions aimed to reduce over-reliance on imaging findings and misapplication of the McDonald criteria may prevent MS misdiagnosis. [ABSTRACT FROM AUTHOR]

In general, individuals who are lesbian, gay, bisexual, transgender, queer or questioning, plus other identities (LGBTQ+) living with multiple sclerosis (MS) have less favorable healthcare experiences and poorer overall health than cisgendered heterosexual individuals. They may experience further challenges in addition to managing their MS, including psychological or emotional problems, and an increased risk of comorbid diseases and substance abuse. Transgender individuals specifically face additional unique challenges, including high rates of mental health distress and effects from long-term exogenous hormone use and gender affirmation surgery. These findings highlight disparities in both quality of care and health outcomes of LGBTQ+ individuals. Unmet needs and drivers of these disparities relate to a lack of inclusivity in healthcare environments, poor communication between healthcare professionals (HCPs) and LGBTQ+ patients, inadequate HCP knowledge of LGBTQ+ health issues, and gaps in research into the impact of sexual orientation and gender identity in MS. Although data are limited, recommendations to improve the experience and care of LGBTQ+ individuals with MS include increasing HCP awareness of the challenges LGBTQ+ individuals face and provision of inclusive care, with the overarching goal for HCPs to be allies to the LGBTQ+ community. Improvements may be achieved through diversity and cultural awareness training of HCPs on sexual orientation and gender identity, and ensuring a friendly, open, and supportive healthcare environment. Use of sensitive and gender-neutral language by HCPs, representation of LGBTQ+ individuals in patient materials, and access to LGBTQ+ MS support groups are also recommended. HCPs should aim to integrate discussion of sexual orientation and gender identity and sexual and mental health into routine assessments and collaborate with other HCPs as needed. By addressing the challenges and unmet needs of LGBTQ+ individuals with MS, this should help resolve disparities in their quality of care and improve their overall health. [ABSTRACT FROM AUTHOR]

Sexual dysfunction (SD) is a common symptom for many with multiple sclerosis (MS). However, most studies researching this topic have predominantly White samples. While this matches epidemiological estimates, research has shown that those of other ethnic groups, such as African Americans/Blacks and Hispanics/Latinos, tend to exhibit more symptomology. This study aimed to determine if this greater symptomology in other ethnic groups with MS holds for SD. Study participants were recruited from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. Participants completed the MSISQ-19 and the PDDS and provided demographic information. Study participants were 5445 respondents (Mage = 51 years, SD = 9.56, 75% female, 93% White). White, African American/Black, and Hispanic/Latino groups were compared on sexual dysfunction. Linear mixed effects modeling revealed that the MSISQ-19 subscale scores were significantly different for the African American/Black group (t = − 2.48, p < 0.013) and all female participants (t = − 2.58, p < 0.010). African American/Black participants had the least amount of primary SD (M = 10.56, 95% CI [9.09, 12.03]). African American/Black participants had the highest amount of secondary SD (M = 18.62, 95% CI [17.15, 20.09]), though the result was not statistically significant. Additionally, African American/Black females scored higher in all subscale scores when compared to African American/Black males, with a 3-point and 2-point difference in primary and tertiary symptoms. Our study has highlighted the importance of clinicians assessing for SD within their patients and to consider potential differences in symptom presentations of racial groups. [ABSTRACT FROM AUTHOR]

Background: As disease-modifying therapies do not reverse the course of multiple sclerosis (MS), assessment of therapeutic success involves documenting patient-reported outcomes (PROs) concerning health-related quality of life, disease and treatment-related symptoms, and the impact of symptoms on function. Interpreting PRO data involves going beyond statistical significance to calculate within-patient meaningful change scores. These thresholds are needed for each PRO in order to fully interpret the PRO data. This analysis of PRO data from the PROMiS AUBAGIO study, which utilized 8 PRO instruments in teriflunomide-treated relapsing-remitting MS (RRMS) patients, was designed to estimate clinically meaningful within-individual improvement thresholds in the same manner, for 8 PRO instruments. Results: The analytical approach followed a triangulation exercise that considered results from anchor- and distribution-based methods and graphical representations of empirical cumulative distribution functions in PRO scores in groups defined by anchor variables. Data from 8 PRO instruments (MSIS-29 v2, FSMC, MSPS, MSNQ, TSQM v1.4, PDDS, HRPQ-MS v2, and HADS) were assessed from 434 RRMS patients. For MSIS-29 v2, FSMC, MSPS, and MSNQ total scores, available anchor variables enabled both anchor- and distribution-based methods to be applied. For instruments with no appropriate anchor available, distribution-based methods were applied. A recommended value for meaningful within-individual improvement was defined by comparing mean change in PRO scores between participants showing improvement of one or two categories in the anchor variable or those showing no change. A "lower bound" estimate was calculated using distribution-based methods. An improvement greater than the lower-bound estimate was considered "clinically meaningful". Conclusion: This analysis produced estimates for assessing meaningful within-individual improvements for 8 PRO instruments used in MS studies. These estimates should be useful for interpreting scores and communicating study results and should facilitate decision-making by regulatory and healthcare authorities where these 8 PROs are commonly employed. [ABSTRACT FROM AUTHOR]

This article examines representations of multiple sclerosis in direct-to-consumer pharmaceutical advertisements televised during 2021 in the United States. Drawing on and developing Cultural Disability Studies theory, it highlights how advertising produced by pharmaceutical companies influences mass understandings, as well as personal experiences of, multiple sclerosis. The application of textual analysis to a small-sample of direct-to-consumer advertisements that promote drug therapies for multiple sclerosis (n. 4) uncovers the prevalence of profit-driven, rather than person-driven, medical neoliberal ideologies. On first impressions, the advertisements appear to challenge the metanarrative of multiple sclerosis as a life-limiting tragedy. However, the research findings reveal that multiple sclerosis is framed as the "hidden enemy" of the American dream, supposedly threatening individuals' abilities to live productive and meaningful lives, while the consumption of pharmaceutical "wonder" drugs is treated as an act of self-empowerment. [ABSTRACT FROM AUTHOR]

30 years ago the first disease-modifying therapy for relapsing multiple sclerosis was approved for use in the United States and soon thereafter across the globe. Since then the field of MS therapeutics, and studies of immunopathogenesis and genetics, have advanced our understanding of the disease and raised the hope of better addressing the next challenges of treating progressive disease, enhancing repair of the damaged nervous system and, hopefully, of a cure. Thirty years into the MS treatment era, the field continues to debate fundamental aspects of MS, and there exists a widening chasm between the triumphs in relapsing disease and the desolation of MS progression, which remains the principal unmet need. In this Personal Viewpoint, we outline lessons learned from the first era of great therapeutic development, as we look to the future of MS research and therapeutics. [ABSTRACT FROM AUTHOR]

Introduction: This study assessed the cost-effectiveness of ozanimod compared with commonly used disease-modifying therapies (DMTs) for relapsing–remitting multiple sclerosis (RRMS). Methods: Annualized relapse rate (ARR) and safety data were obtained from a network meta-analysis (NMA) of clinical trials of RRMS treatments including ozanimod, fingolimod, dimethyl fumarate, teriflunomide, interferon beta-1a, interferon beta-1b, and glatiramer acetate. ARR-related number needed to treat (NNT) relative to placebo and annual total MS-related healthcare costs was used to estimate the incremental annual cost per relapse avoided with ozanimod vs each DMT. ARR and adverse event (AE) data were combined with drug costs and healthcare costs to manage relapses and AEs in order to estimate annual cost savings with ozanimod vs other DMTs, assuming a 1 million USD fixed treatment budget. Results: Treatment with ozanimod was associated with lower incremental annual healthcare costs to avoid a relapse, ranging from $843,684 vs interferon beta-1a (30 μg; 95% confidence interval [CI] − $1,431,619, − $255,749) to $72,847 (95% CI − $153,444, $7750) vs fingolimod. Compared with all other DMTs, ozanimod was associated with overall healthcare cost savings ranging from $8257 vs interferon beta-1a (30 μg) to $2178 vs fingolimod. Compared with oral DMTs, ozanimod was associated with annual cost savings of $6199 with teriflunomide 7 mg, $4737 with teriflunomide 14 mg, $2178 with fingolimod, and $2793 with dimethyl fumarate. Conclusion: Treatment with ozanimod was associated with substantial reductions in annual drug costs and total MS-related healthcare costs to avoid relapses compared with other DMTs. In the fixed-budget analysis, ozanimod demonstrated a favorable cost-effective profile relative to other DMTs. [ABSTRACT FROM AUTHOR]

We investigated the influence of post-traumatic growth (PTG) and mental health (MH) on multiple sclerosis (MS) caregivers' uses of coping strategies and identified biopsychosocial predictors of proactive or reactive coping. The Short Form Health Survey (SF-12), General Health Questionnaire (GHQ-28), Post-Traumatic Growth Inventory (PGI-21), Brief COPE Questionnaire (COPE-28), and Multidimensional Scale of Perceived Social Support (MSPSS) were used to evaluate 209 caregivers. Higher PTG was related to greater use of emotional support, positive reframing, religion, active coping, instrumental support, planning, denial, self-distraction, self-blaming, and venting. Better MH was associated with greater use of acceptance, while behavioral disengagement and self-distraction were associated with poorer MH. The PTG dimensions relating to others and new possibilities, SF-12 dimensions of physical and emotional roles as well as partnership, not living with the patient, and significant others' social support were predictors of proactive coping. Reactive coping was positively predicted by the PTG dimension relating to others, depression, vitality, other than partner relation, and physical role, and negatively predicted by mental health level and emotional role. In summary, higher MH was associated with proactive coping strategies, whereas post-traumatic growth was related to the use of a wide range of proactive coping as well as reactive coping strategies. [ABSTRACT FROM AUTHOR]

Background: Nursing home residents face many barriers to accessing specialist physician outpatient care. However, little data exists on how specialty care use changes when individuals transition to a nursing home in the US. Methods: We studied specialist outpatient visits for new long‐term care (LTC) residents within 1 year before and after their transition to nursing home residence using the Minimum Data Set v3.0 (MDS) and a 20% sample of Medicare fee‐for‐service claims in 2014–2018. To focus on residents requiring specialty care at baseline, we limited the cohort to residents with specialty care in the 13–24 months before LTC transition. We then measured the proportion of residents receiving at least one visit in the 12 months before the transition and the 12 months after the transition. We also examined subgroups of residents with a prior diagnosis likely requiring long‐term specialty care (e.g., multiple sclerosis). Finally, we examined whether there was continuity of care within the same specialty care provider. Results: Among 39,288 new LTC transitions identified in 2016–2017, 17,877 (45.5%) residents had a prior specialist visit 13–24 months before the transition. Among them, the proportion of residents with specialty visits decreased consistently in all specialties in the 12 months after the transition, ranging from a relative decrease of 14.4% for orthopedics to 67.9% for psychiatry. The relative decrease among patients with a diagnosis likely requiring specialty care ranged from 0.9% for neurology in patients with multiple sclerosis to 67.1% for psychiatry in patients with severe mental illness. Among residents who continued visiting a specialist, 78.9% saw the same provider as before the transition. Conclusions: The use of specialty care falls significantly after patients transition to a nursing home. Further research is needed to understand what drives this drop in use and whether interventions, such as telemedicine can ameliorate potential barriers to specialty care. See related Editorial by Gerlach et al. in this issue. [ABSTRACT FROM AUTHOR]

Objective: Certain neurologic diseases have been noted to vary by season, and this is important for understanding disease mechanisms and risk factors, but seasonality has not been systematically examined across the spectrum of neurologic disease, and methodologic guidance is also lacking. Methods: Using nationally representative data from the National Inpatient Sample, a stratified 20% sample of all non‐federal acute care hospitalizations in the United States, we calculated the monthly rate of hospitalization for 14 neurologic diseases from 2016 to 2018. For each disease, we assessed seasonality of hospitalization using chi‐squared, Edward, and Walter‐Elwood tests and seasonal time series regression models. Statistical tests were adjusted for multiple hypothesis testing using Bonferroni correction. Results: Meningitis, encephalitis, ischemic stroke, intracerebral hemorrhage, Guillain‐Barre syndrome, and multiple sclerosis had statistically significant seasonality according to multiple methods of testing. Subarachnoid hemorrhage, status epilepticus, myasthenia gravis, and epilepsy had significant seasonality according to Edwards and Walter‐Elwood tests but not chi‐square tests. Seasonal time series regression illustrated seasonal variation in all 14 diseases of interest, but statistical testing for seasonality within these models using the Kruskal‐Wallis test only achieved statistical significance for meningitis. Interpretation: Seasonal variation is present across the spectrum of acute neurologic disease, including some conditions for which seasonality has not previously been described, and can be examined using multiple different methods. ANN NEUROL 2023;93:743–751 [ABSTRACT FROM AUTHOR]

Multiple sclerosis (MS) is an acquired demyelinating disease of the central nervous system (CNS). Historically, research on MS has focused on White persons with MS. This preponderance of representation has important possible implications for minority populations with MS, from developing effective therapeutic agents to understanding the role of unique constellations of social determinants of health. A growing body of literature involving persons of historically underrepresented races and ethnicities in the field of multiple sclerosis is assembling. Our purpose in this narrative review is to highlight two populations in the United States: Black and Hispanic persons with multiple sclerosis. We will review the current understanding about the patterns of disease presentation, genetic considerations, response to treatment, roles of social determinants of health, and healthcare utilization. In addition, we explore future directions of inquiry as well as practical methods of meeting these challenges. [ABSTRACT FROM AUTHOR]

Objective: The radiologically isolated syndrome (RIS) represents the earliest detectable pre‐clinical phase of multiple sclerosis (MS). This study evaluated the impact of therapeutic intervention in preventing first symptom manifestation at this stage in the disease spectrum. Methods: We conducted a multi‐center, randomized, double‐blinded, placebo‐controlled study involving people with RIS. Individuals without clinical symptoms typical of MS but with incidental brain MRI anomalies consistent with central nervous system (CNS) demyelination were included. Within 12 MS centers in the United States, participants were randomly assigned 1:1 to oral dimethyl fumarate (DMF) 240 mg twice daily or placebo. The primary endpoint was the time to onset of clinical symptoms attributable to a CNS demyelinating event within a follow‐up period of 96 weeks. An intention‐to‐treat analysis was applied to all participating individuals in the primary and safety investigations. The study is registered at ClinicalTrials.gov, NCT02739542 (ARISE). Results: Participants from 12 centers were recruited from March 9, 2016, to October 31, 2019, with 44 people randomized to dimethyl fumarate and 43 to placebo. Following DMF treatment, the risk of a first clinical demyelinating event during the 96‐week study period was highly reduced in the unadjusted Cox proportional‐hazards regression model (hazard ratio [HR] = 0.18, 95% confidence interval [CI] = 0.05–0.63, p = 0.007). More moderate adverse reactions were present in the DMF (34 [32%]) than placebo groups (19 [21%]) but severe events were similar (DMF, 3 [5%]; placebo, 4 [9%]). Interpretation: This is the first randomized clinical trial demonstrating the benefit of a disease‐modifying therapy in preventing a first acute clinical event in people with RIS. ANN NEUROL 2023;93:604–614 [ABSTRACT FROM AUTHOR]

Individuals with multiple sclerosis (MS) face many workplace challenges. There are various laws that are intended to protect these individuals to have equal access to employment by requiring employers to provide workplace accommodations. To achieve benefits of workplace accommodations, individuals with MS need to disclose their disabilities and request accommodations. Limited research has examined psychosocial and demographic factors associated with requesting or not requesting workplace accommodations among people with MS. The current study aimed to fill this research gap. Eighty-six individuals with MS were recruited from agencies serving people with MS. Regarding psychosocial factors, findings show that requesters, in comparison with non-requesters, reported higher scores in self-efficacy (e.g., requesting accommodation and goal setting), outcome expectancy (e.g., perceived appropriateness and personal cost of accommodation requests), positive affect, knowledge of ADA and accommodations, job satisfaction, and a lower score in negative affect. Among demographic factors, only job tenure was significant. Rehabilitation professionals may need to assist employees with MS to foster psychosocial factors to facilitate individuals with MS, especially those with a short job tenure request accommodations and fully advantage of available workplace resources to enhance their job retention and satisfaction. [ABSTRACT FROM AUTHOR]

Digital Health Technologies (DHTs) such as connected sensors offer particular promise for improving data collection and patient empowerment in neurology research and care. This study analyzed the recent evolution of the use of DHTs in trials registered on ClinicalTrials.gov for four chronic neurological disorders: epilepsy, multiple sclerosis, Alzheimer's, and Parkinson's disease. We document growth in the collection of both more established digital measures (e.g., motor function) and more novel digital measures (e.g., speech) over recent years, highlighting contexts of use and key trends. [ABSTRACT FROM AUTHOR]

Background: Serum levels of neurofilament light chain (sNfL) are a potentially useful biomarker for assessing the efficacy of multiple sclerosis (MS) treatments. Objective: To compare levels of sNfL in patients with MS who switched from natalizumab every 4 weeks (Q4W) to extended interval dosing (EID) and patients who remained on Q4W dosing in real-world clinical practice. Methods: This was a retrospective analysis of samples from patients treated with natalizumab from 2010 to 2015 at a single center in the United States. Levels of sNfL were compared in patients who stayed on Q4W dosing or who switched to EID (parallel-arm analyses) and during Q4W and EID periods in patients who switched to EID (pre- and post-switch analyses). Results: The analysis included 139 patients (Q4W: n = 79; EID: n = 60). After adjustment, levels of sNfL did not significantly differ between patients who remained on Q4W dosing and those who switched to EID in parallel-arm analyses (adjusted Q4W-EID difference = 0.51 pg/mL; p = 0.60) or pre- and post-switch analyses (adjusted difference = 0.96 pg/mL; p = 0.10). Conclusion: These sNfL biomarker results suggest that the effectiveness of natalizumab is maintained in patients who switch from Q4W dosing to EID. [ABSTRACT FROM AUTHOR]

Acute optic neuritis (ON) is variably treated with glucocorticoids. We aimed to describe factors associated with glucocorticoid use. In this retrospective, longitudinal cohort study of insured patients in the United States (2005–2019), adults 18–50 years old with one inpatient or ≥2 outpatient diagnoses of ON within 90 days were included. Glucocorticoid use was classified as none, any dose, and high-dose (>100 mg prednisone equivalent ≥1 days). The primary outcome was glucocorticoid receipt within 90 days of the first ON diagnosis. Multivariable logistic regression models assessed the relationship between glucocorticoid use and sociodemographics, comorbidities, clinician specialty, visit number, and year. Of 3026 people with ON, 65.8% were women (n = 1991), median age (interquartile range) was 38 years (31,44), and 68.6% were white (n = 2075). Glucocorticoids were received by 46% (n = 1385); 54.6% (n = 760/1385) of whom received high-dose. The odds of receiving glucocorticoids were higher among patients with multiple sclerosis (OR 1.61 [95%CI 1.28–2.04]; P <.001), MRI (OR 1.75 [95%CI 1.09–2.80]; P =.02), 3 (OR 1.80 [95%CI 1.46–2.22]; P <.001) or more (OR 4.08 [95%CI 3.37–4.95]; P <.001) outpatient ON visits, and in certain regions. Compared to ophthalmologists, patients diagnosed by neurologists (OR 1.36 [95%CI: 1.10–1.69], p =.005), emergency medicine (OR 3.97 [95%CI: 2.66–5.94]; P <.001) or inpatient clinicians (OR 2.94 [95%CI: 2.22–3.90]; P <.001) had higher odds of receiving glucocorticoids. Use increased 1.1% annually (P <.001). Demyelinating disease, care intensity, setting, region, and clinician type were associated with glucocorticoid use for ON. To optimize care, future studies should explore reasons for ON care variation, and patient/clinician preferences. [ABSTRACT FROM AUTHOR]

Health care providers have highlighted the need for tools and resources that support promotion of exercise behavior within comprehensive multiple sclerosis (MS) care. This study involved a final quality improvement evaluation of exercise promotion models and materials for inclusion within this setting. Our research team distributed a paper-based survey containing Likert scales, open answer questions, and copies of the models for editing. We distributed this survey among health care providers across the United States. We conducted a novel mixed-methods analysis evaluating quantitative, qualitative, and creative data. We received completed surveys from 13 health care providers who strongly rated the clarity and applicability of the models and materials, and reported that no major improvements were necessary. The minor improvements were specific per comprehensive MS care center. The feedback indicated that the "Exercise in Medicine" models and materials are guides such that the processes should be integrated into real world practice by amending roles and responsibilities with the team members and structure per comprehensive MS care center. This paper presents finalized models and materials for exercise promotion within comprehensive MS care that are ready to be tested for feasibility and efficacy in a clinical trial. Health care providers require support to promote exercise within the context of comprehensive MS care. The practice models in this article provide guides regarding how to promote exercise in this context. Implementing these exercise promotion guides can reduce the burden of neurologists, and ensure patients receive exercise support from appropriate providers. These guides should be implemented within the context of each individual care center, and not as an explicit step by step guide as each care center is unique. [ABSTRACT FROM AUTHOR]

Objective: United States oncology trends consistently demonstrate that nearly half of T4a larynx carcinoma patients are treated with larynx preservation, despite national guidelines favoring laryngectomy. This study identifies clinical decision‐making drivers and defines patient subsets that should become targets for care improvement. Methods: Retrospective analysis of patients with cT4 squamous cell carcinoma of the larynx from US National Cancer Database 2005–2016. Demographic data and survival rates between clinical pathways were compared. Survival was estimated by Kaplan–Meier method with statistical comparisons assessed by log‐rank test. Results: Of 11,556 patients with cT4 disease, laryngectomy (TL) was the initial treatment for 4627 (40%) patients. Larynx preservation via chemoradiation (CRT) occurred for 4307 patients. TL and CRT patients had similar Charlson–Deyo comorbidity indices and insurance status. TL patients had higher total tumor size, lower N3 rates and were more often seen at academic institutions (p <.0001). N0 surgery patients with adjuvant treatment demonstrated superior median survival (MS) compared to CRT (surgery + radiation MS: 69 months, surgery + chemoradiation MS: 66, CRT MS: 37.7), p <.0001. MS for N1/N2 disease patients was 56.5 months for surgery + radiation and 35.5 months for surgery + CRT, superior to CRT, MS 30.8 months, p <.0001. Tri‐modality N3 patients with up front surgery had similar MS compared to CRT (surgery + chemoradiation 21.3 months vs. CRT 16.1), p =.95. Conclusion: National quality improvement initiatives are needed to promote guideline adherence and improve survival in advanced larynx cancer. Targets for such initiatives should be patients with limited or no nodal disease burden, that meet clear T4a imaging criteria. Level of Evidence: Level IV, non‐randomized controlled cohort. [ABSTRACT FROM AUTHOR]

Purpose: Fatigue is an overlooked symptom for musculoskeletal diseases, including rare conditions like systemic sclerosis (SSc). The purpose of this study were the following: (1) to adapt the content and delivery method of an existing fatigue intervention, and (2) to determine the feasibility of Fatigue and Activity Management Education in Systemic Sclerosis (FAME‐iSS). Methods: In Phase 1 adaptations were recorded using the Framework for Modification and Adaptations. In Phase 2, participants completed the 6‐week FAME‐iSS intervention and baseline, post‐intervention, and 3‐month follow‐up assessments measuring fatigue levels, fatigue impact, mental health, self‐efficacy, and use of energy conservation strategies. Qualitative data included a post‐intervention focus group and 3‐month follow‐up interviews. Results: Three main changes were made to the original intervention: (1) the content was adapted from management of Lupus‐related fatigue to management of SSc‐related fatigue, (2) context for delivery from Ireland to United States, and (3) in‐person to online format. Participants (n = 4) were 51.8 ± 12.1 years old, had been diagnosed with SSc for 12.0 ± 8.0 years, were receiving disability support, and had college degrees. All participants had 100% attendance and completed all study activities. Participants had positive comments about the programme format, content, and implementation. Post‐intervention, improvements were observed in most measures. Moderate effect sizes were noted in fatigue and self‐efficacy scores. Conclusion: Participants' positive responses supported the need for FAME‐iSS for people with SSc. Even with the small sample, FAME‐iSS led to improvements in fatigue and use of energy conservation strategies. The online format allowed for participation and sharing of ideas, especially during the global pandemic. [ABSTRACT FROM AUTHOR]

This study highlights the persistent osteoporosis treatment gap following fragility fractures. Patients with multiple sclerosis sustained more primary hip fractures than controls and exhibited significantly higher rates of falls within three years post-fracture. However, multiple sclerosis (MS) patients were significantly more likely to be diagnosed with osteoporosis and treated with medications. Introduction: The purpose of this study was to compare rates of osteoporosis management, falls, and secondary fractures following primary fragility fractures among patients with MS versus matched controls. Materials and methods: A retrospective matched cohort study was conducted using the PearlDiver database. Patients aged ≥ 50 years with primary fragility fractures were identified (n = 120,368). Within this population, patients with MS were matched 1:10 with controls across age, sex, and US region. Rates of osteoporosis diagnoses and pharmacologic treatment, low-energy falls, and secondary fragility fractures were compared at three years post-fracture via logistic regression. Results: A total of 1,232 patients with MS (mean age, 65.7 years) with primary fragility fractures were matched with 12,320 controls (mean age, 65.8 years). Primary hip fractures were significantly more common in the MS cohort (47.4% vs. 34.2%, p < 0.001). After the initial fracture, patients with MS were significantly more likely to receive a formal osteoporosis diagnosis (12.9% vs. 9.7%; OR 1.35; 95% CI, 1.13–1.61) and osteoporosis pharmacotherapy (14.4% vs. 11.9%; OR 1.24; 95% CI, 1.04–1.46). The MS cohort also exhibited significantly higher rates of falls (27.8% vs 22.7%; OR 1.15; 95% CI, 1.01–1.32). Rates of secondary fractures were comparable (6.3% vs. 5.0%; OR 1.10; 95% CI, 0.85–1.40). Conclusion: Primary hip fragility fractures were significantly more common in patients with MS compared to matched controls. Following an initial fracture, patients with MS exhibited a significantly higher rate of falls but were more likely to be diagnosed with osteoporosis and treated with medications. [ABSTRACT FROM AUTHOR]

Introduction: Comparisons of healthcare utilization and expenditure among multiple sclerosis (MS) disease-modifying therapies (DMTs) are limited. Methods: In this retrospective cohort study using commercial insurance claims data of a US population (2010–2019), we compared healthcare utilization and costs in MS across different DMTs. We assigned patients to different treatment arms: no DMT (ND), high-efficacy (HE) DMT (alemtuzumab, B cell depletion, cladribine, and natalizumab), and standard-efficacy (SE) DMT (dimethyl fumarate, glatiramer acetate, interferon beta, sphingosine-1-phosphate receptor modulator, and teriflunomide). We obtained healthcare costs and occurrences of healthcare services: outpatient visits, emergency room visits, hospitalizations, MS-related magnetic resonance imaging (MRI). We quantified relapses (based on MS-related hospitalizations, as well as outpatient visits with prescription of high-dose steroids) and medical complexity (based on unique drug classes of prescriptions). We calculated covariate-adjusted incidence rate ratio of healthcare services using negative binomial regression with ND as reference and covariate-adjusted mean cumulative healthcare costs using a generalized linear model with log-link function and gamma distribution. Results: Among the 25,932 patients with MS (mean age 52.8 years, 75.2% women), both HE (mean age 54.0 years, 76.2% women) and SE (mean age 43.9 years, 75.6% women) groups had more non-pharmacy healthcare utilization than ND (mean age 57.6 years, 75.4% women), including overall outpatient doctor visits, neurology visits, and MS-related MRIs as well as relapses and medical complexities. Relative to ND, both HE and SE groups had higher pharmacy costs and overall healthcare costs 12 months after treatment initiation, despite having lower or equivalent non-pharmacy medical costs. In patients on DMT, pharmacy costs accounted for up to 65% of overall healthcare costs with over 85% of pharmacy costs attributable to DMT costs. Conclusion: DMT cost is a key driver of the overall healthcare expenditure in MS. Future comparative and cost-effectiveness studies integrating claims and electronic health records data with better balancing of patient characteristics are warranted. [ABSTRACT FROM AUTHOR]

BACKGROUND: Although persons with multiple sclerosis (MS) are encouraged to engage in physical activity, they are less active than the general population and experience poorer emotional/cognitive health, underscoring the need for increased understanding of the factors independently associated with exercise in MS. METHODS: Six hundred forty people with MS completed a detailed demographic survey, the Godin Leisure-Time Exercise Questionnaire, and Quality of Life in Neurological Disorders short forms. The average number of weekly sessions of exercise was examined as a count, as a binary variable (a weekly minimum of 4 sessions of physical activity), and as an ordinal variable of being active using multivariable zero-inflated negative binomial, logistic, and ordered logistic regression models, respectively. Primary predictors of interest included depression, cognitive function, positive affect, and lower extremity functioning as measured by the Quality of Life in Neurological Disorders short forms. RESULTS: The study sample was 91% White race, 83% female, 65% with a relapsing-remitting MS diagnosis. The mean participant age was 52 years. Across analyses, body mass index and disability were inversely associated with exercising. Greater lower extremity impairment was associated with decreased odds of exercising and being active. A greater burden of depression symptoms was correlated with lower odds of engaging in physical activity. People with MS with higher self-reported cognitive functioning were less likely to engage in any exercise, but it was not associated with frequency of activities. CONCLUSIONS: These results demonstrate associations between exercise and cognitive and emotional health in people with MS, underscoring the need to consider these factors when designing MS-targeted physical activity recommendations. [ABSTRACT FROM AUTHOR]

Background: Multiple sclerosis (MS) is a chronic progressive neurological disease that influences an individual's physical, mental, emotional, and social functioning, otherwise known as health-related quality of life (HRQOL). To fully capture the impacts of MS on HRQOL, perspectives from the lived experience should be investigated. Objective: The purpose of this study was to describe, in people with relapsing–remitting multiple sclerosis (RRMS), (1) the health and wellness needs and facilitators perceived to influence HRQOL, (2) determine which health needs are not being met, and (3) identify barriers to meeting health and wellness needs. Methods: Participants with RRMS were recruited from a more extensive study for this cross-sectional, qualitative investigation guided by phenomenological theory. Semi-structured interviews were conducted until data saturation was reached (n = 15). The data were analyzed using a thematic analysis approach. Results: Five themes emerged as facilitators of HRQOL; mental/emotional health, knowledge about MS, family/peer support, lifestyle behaviors, and social engagement. Identified barriers to achieving better HRQOL included limited access to specialized care, lack of communication/ empathy from providers, lack of comprehensive care, challenges caused by MS symptoms, and difficulty navigating the healthcare and insurance landscape. Conclusions: Study participants described mental health and lifestyle behaviors as the primary promoters of overall HRQOL. Access to dietary guidelines, exercise instruction, and education about living healthy with MS were also identified as positive contributors to overall QOL. When these positive contributors are limited or absent, HRQOL was reported to decrease. [ABSTRACT FROM AUTHOR]