Consortium Of Multiple Sclerosis Centers Research Articles

Abstracts from the 38th Annual Meeting of the Consortium of Multiple Sclerosis Centers: May 29-June 1, 2024 · Nashville, Tennessee

Abstracts from the 38th Annual Meeting of the Consortium of Multiple Sclerosis Centers: May 29-June 1, 2024 · Nashville, Tennessee

Geographic Disparities in Access to Neurologists and Multiple Sclerosis Care in the United States.

A shortage of neurology clinicians and healthcare disparities may hinder access to neurologic care. This study examined disparities in geographic access to neurologists and subspecialty multiple sclerosis (MS) care among various demographic segments of the United States. Neurologist practice locations from 2022 CMS Care Compare physician data and MS Center locations as defined by the Consortium of Multiple Sclerosis Centers were used to compute spatial access for all U.S. census tracts. Census tract-level community characteristics (sex, age, race, ethnicity, education, income, insurance, % with computer, % without a vehicle, % with limited English, and % with hearing, vision, cognitive, and ambulatory difficulty) were obtained from 2020 American Community Survey 5-year estimates. Rural-urban status was obtained from 2010 rural-urban commuting area codes. Logistic and linear regression models were used to examine access to a neurologist or MS Center within 60 miles and 60-mile spatial access ratios. Of 70,858 census tracts, 388 had no neurologists within 60 miles and 17,837 had no MS centers within 60 miles. Geographic access to neurologists (spatial access ratio [99% CI]) was lower for rural (-80.49%; CI [-81.65 to -79.30]) and micropolitan (-60.50%; CI [-62.40 to -58.51]) areas compared with metropolitan areas. Tracts with 10% greater percentage of Hispanic individuals (-4.53%; CI [-5.23 to -3.83]), men (-6.76%; CI [-8.96 to -4.5]), uninsured (-7.99%; CI [-9.72 to -6.21]), individuals with hearing difficulty (-40.72%; CI [-44.62 to -36.54]), vision difficulty (-13.0%; [-18.72 to -6.89]), and ambulatory difficulty (-15.68%; CI [-19.25 to -11.95]) had lower access to neurologists. Census tracts with 10% greater Black individuals (3.50%; CI [2.93-10.71]), college degree holders (-7.49%; CI [6.67-8.32]), individuals with computers (16.57%, CI [13.82-19.40]), individuals without a vehicle (9.57%; CI [8.69-10.47]), individuals with cognitive difficulty (25.63%; CI [19.77-31.78]), and individuals with limited English (18.5%; CI [16.30-20.73]), and 10-year older individuals (8.85%; CI [7.03-10.71]) had higher spatial access to neurologists. Covariates for access followed similar patterns for MS centers. Geographic access to neurologists is decreased in rural areas, in areas with higher proportions of Hispanics, populations with disabilities, and those uninsured. Access is further limited for MS subspecialty care. This study highlights disparities in geographic access to neurologic care.

Symptom Management Among Multiple Sclerosis Care Partners in Canada

CE INFORMATION ACTIVITY AVAILABLE ONLINE: To access the article and evaluation online, go to https://www.highmarksce.com/mscare. TARGET AUDIENCE: The target audience for this activity is physicians, advanced practice clinicians, nursing professionals, social workers, and other health care providers involved in the management of patients with multiple sclerosis (MS). LEARNING OBJECTIVE: Characterize the type, number, and frequency of symptoms MS care partners manage. Describe the level of symptom management difficulty in the caregiving role and types of support preferred by MS care partners. ACCREDITATION: In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Intellisphere, LLC. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the health care team. This activity was planned by and for the health care team, and learners will receive 0.5 Interprofessional Continuing Education (IPCE) credit for learning and change. PHYSICIANS: The CMSC designates this journal-based activity for a maximum of 0.5 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. NURSES: The CMSC designates this enduring material for 0.5 contact hour of nursing continuing professional development (NCPD) (none in the area of pharmacology). PSYCHOLOGISTS: This activity is awarded 0.5 CE credit. SOCIAL WORKERS: As a Jointly Accredited Organization, the CMSC is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. Regulatory boards are the final authority on courses accepted for continuing education credit. Social workers completing this course receive 0.5 general continuing education credit. DISCLOSURES: It is the policy of the Consortium of Multiple Sclerosis Centers to mitigate all relevant financial disclosures from planners, faculty, and other persons that can affect the content of this CE activity. For this activity, all relevant disclosures have been mitigated. Francois Bethoux, MD, editor in chief of the International Journal of MS Care (IJMSC), has served as physician planner for this activity. He and Alissa Mary Willis, MD, associate editor of IJMSC, have disclosed no relevant financial relationships. Authors; Katherine L. Cardwell, BHSc; Taylor A. Hume, BHSc; Odessa J. McKenna, MSc; Lara A. Pilutti, PhD; and Afolasade Fakolade, PhD, have disclosed no relevant financial relationships. The staff at IJMSC, CMSC, and Intellisphere, LLC who are in a position to influence content have disclosed no relevant financial relationships. Laurie Scudder, DNP, NP, continuing education director CMSC, has served as a planner and reviewer for this activity. She has disclosed no relevant financial relationships. METHOD OF PARTICIPATION: Release Date: November 1, 2023; Valid for Credit through: November 1, 2024 To receive CE credit, participants must: (1) Review the continuing education information, including learning objectives and author disclosures.(2) Study the educational content.(3) Complete the evaluation, which is available at https://www.highmarksce.com/mscare. Statements of Credit are awarded upon successful completion of the evaluation. There is no fee to participate in this activity. DISCLOSURE OF UNLABELED USE: This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. The CMSC and Intellisphere, LLC do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of the CMSC or Intellisphere, LLC. DISCLAIMER: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health care professionals without first evaluating their patients’ conditions, considering possible contraindications or risks, reviewing any applicable manufacturer’s product information, and comparing any therapeutic approach with the recommendations of other authorities.

Diversity, Equity, and Inclusion in the Multiple Sclerosis Community: A Call to Action.

Many medical organizations have begun to confront the longstanding problem of inequalities in health care delivery and the undeniable effect of disparities on health outcomes. The Consortium of Multiple Sclerosis Centers (CMSC) recognizes that disparities affect the lives of many people with multiple sclerosis (MS) and acknowledges the need to address this as an organization. The CMSC recently (1) appointed a task force, (2) conducted a survey of its membership, (3) commissioned this review article and call to action, and (4) formulated a mission statement on diversity, equity, and inclusion (DEI), which was adopted by the CMSC's Board of Governors in March 2023. This paper summarizes recent literature on health care disparities in MS, particularly those relating to race/ethnicity, sexual orientation, and gender identity. It presents findings from CMSC's survey of members' awareness of DEI issues, the need for education and resources for MS care providers, and existing institutional policies on DEI in the members' practice settings. It also presents the task force's recommendations for next steps, which includes the goal of greater diversity in the MS workforce of the future. The CMSC will continue to revisit DEI policies and practices over time with the goal of motivating greater awareness, momentum, and positive changes within the MS community.

Late-Breaking Abstracts from the 2023 Annual Meeting of the Consortium of Multiple Sclerosis Centers: May 31-June 3, 2023 • Aurora, Colorado

Late-Breaking Abstracts from the 2023 Annual Meeting of the Consortium of Multiple Sclerosis Centers: May 31-June 3, 2023 • Aurora, Colorado

Longitudinal Olfactory Patterns in Multiple Sclerosis: A Scoping Review and Implication for Use in Management of Disease.

Although studies regarding multiple sclerosis (MS) and olfactory dysfunction (OD) have been previously described and summarized, there is not a sole review of longitudinal studies regarding the matter. This review examines the existing literature investigating MS and its effect on olfaction. In addition, the role of OD in the diagnosis and prognosis of MS is explored. A scoping review of the literature was performed covering longitudinal studies investigating MS and OD. Systematic searches of PubMed, Google Scholar, Web of Science, Embase, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, AgeLine, and MEDLINE were performed using terms that encompassed MS and olfaction. The aim of this review was to build on the existing literature by summarizing only findings that were demonstrated longitudinally. Of 6938 articles identified from the search, 9 met the inclusion criteria: longitudinal observation of relapsing-remitting or progressive MS. Olfaction was measured and scored using various testing arrays, and these scores were then correlated with a multitude of clinical markers. Across all studies, patients with MS demonstrated increased OD. Longitudinally, 2 contrasting patterns were identified: (1) clinical markers of acute inflammation correlated with an increased odor threshold and (2) clinical markers of neurodegeneration, or progression of disease, correlated with a decreased ability to discriminate and identify odors. These studies suggest that olfaction is a dynamic, dependent variable of neurodegeneration, correlating with inflammation and clinical markers. This opens the door for future exploration of olfaction's relationship with MS diagnosis, characterization, and therapeutic response.

Abstracts from the 37th Annual Meeting of the Consortium of Multiple Sclerosis Centers: May 31-June 3, 2023 · Aurora, Colorado

Abstracts from the 37th Annual Meeting of the Consortium of Multiple Sclerosis Centers: May 31-June 3, 2023 · Aurora, Colorado

Compliance and Persistence With Ofatumumab Treatment in Patients With Relapsing Multiple Sclerosis in Clinical Trials for Up to 4 Years (P8-3.002)

Compliance and Persistence With Ofatumumab Treatment in Patients With Relapsing Multiple Sclerosis in Clinical Trials for Up to 4 Years (P8-3.002)

Seronegative Isaac Syndrome Presenting as Focal Limb Stiffness Responsive to Plasma Exchange Therapy (P8-8.015)

<h3>Objective:</h3> N/A <h3>Background:</h3> Isaac syndrome is an autoimmune disorder of peripheral nerve hyperexcitability characterized by neuromyotonia, myokymia, muscles stiffness, pseudomyotonia, and pseudotetany frequently accompanied by dysautonomia and neuropathic pain. Approximately 50% of cases are associated with antibodies against contactin-associated protein-like 2 (CASPR2) or less commonly leucine-rich glioma inactivated protein 1 (LGI1), both components of the voltage-gated potassium channel (VGKC) complex. Paraneoplastic, genetic, and toxic etiologies must be considered. Management includes membrane-stabilizing drugs as well as immunotherapy in more severe cases. <h3>Design/Methods:</h3> N/A <h3>Results:</h3> A 50-year-old woman presented with one year of left neck, shoulder, and upper extremity pain and stiffness that began one month after an upper respiratory illness. Her exam was notable for anterocollis, left shoulder elevation, impaired left shoulder abduction beyond 35–40 degrees, tonically contracted left biceps, and marked tenderness to palpation of the affected muscles. Symptomatic management with diazepam, lorazepam, baclofen, mexiletine, and trihexyphenidyl was ineffective. EMG demonstrated widespread neuromyotonic discharges throughout the proximal greater than distal left upper extremity, cervical and thoracic paraspinals, and right deltoid. Laboratory studies including CASPR2, LGI1, VGKC, GAD-65, and amphiphysin antibodies were unremarkable. Comprehensive screening for occult malignancy was unrevealing. She received partial benefit from carbamazepine, levetiracetam, cyclobenzaprine, and onabotulinumtoxinA injections, but symptoms remained debilitating. She was treated with IVIg 1g/kg Q2 weeks for three months with symptom progression to the jaw and lower extremities. She was started on plasmapheresis QOD for ten days every four weeks with rapid improvement in symptoms. <h3>Conclusions:</h3> We report a case of seronegative Isaac syndrome initially presenting with focal limb stiffness and dystonic posturing that was exquisitely responsive to plasmapheresis. This case highlights the need to consider peripheral nerve hyperexcitability syndromes in patients presenting with focal limb stiffness or painful dystonia and provides additional support for plasmapheresis as an effective treatment option for patients with debilitating symptoms. <b>Disclosure:</b> Dr. Khalil has received personal compensation in the range of $0-$499 for serving as a Resident and Fellow Council Member with American Association of Neuromuscular &amp; Electrodiagnostic Medicine. Dr. Khalil has received personal compensation in the range of $0-$499 for serving as a MS Mentorship Forum Participant with Foundation of the Consortium of Multiple Sclerosis Centers. Dr. Bradshaw has nothing to disclose.

Effect of Longer-term Ofatumumab Treatment on Disability Progression and Brain Volume Change (S16.009)

Effect of Longer-term Ofatumumab Treatment on Disability Progression and Brain Volume Change (S16.009)

Disease Outcomes With Ublituximab in Participants With Highly Active Disease: Subpopulation Analyses of the Phase 3 ULTIMATE I and II Studies in Participants With Relapsing Multiple Sclerosis (P6-3.002)

Disease Outcomes With Ublituximab in Participants With Highly Active Disease: Subpopulation Analyses of the Phase 3 ULTIMATE I and II Studies in Participants With Relapsing Multiple Sclerosis (P6-3.002)

Ublituximab Efficacy in Treatment-Naive Participants With Relapsing Multiple Sclerosis in the Phase 3 ULTIMATE I and II Studies (P6-3.015)

Ublituximab Efficacy in Treatment-Naive Participants With Relapsing Multiple Sclerosis in the Phase 3 ULTIMATE I and II Studies (P6-3.015)

Efficacy of Early Ofatumumab vs Late Switch From Teriflunomide: Subgroup Analysis of the ALITHIOS Open-label Extension Study by Previous Disease-Modifying Therapy Exposure and Age (P6-3.016)

Efficacy of Early Ofatumumab vs Late Switch From Teriflunomide: Subgroup Analysis of the ALITHIOS Open-label Extension Study by Previous Disease-Modifying Therapy Exposure and Age (P6-3.016)

Online Delivery of the Individualized Reduction of Falls Intervention for Persons With Multiple Sclerosis Who Use a Wheelchair or Scooter Full-time: A Pilot Study.

People with multiple sclerosis (MS) who use a wheelchair or scooter full-time fall frequently; however, fall prevention programming that meets the unique needs of this population is limited. This study examined the preliminary efficacy of a group-based online fall prevention and management intervention designed specifically for people with MS. This pre/post intervention, mixed-methods study included people with MS who used a wheelchair or scooter full-time, experienced at least 1 fall within the past year, and transferred independently or with minimal or moderate assistance. Participants engaged in a 6-week, online, individualized, multicomponent fall prevention and management intervention: Individualized Reduction of Falls-Online (iROLL-O). No statistically significant change in fall incidence occurred after iROLL-O. However, fear of falling significantly decreased (P < .01) and knowledge related to fall management (P = .04) and fall prevention and management (P = .03) significantly improved. Qualitative results indicated that participants valued the opportunity for peer learning and iROLL-O's attention to diverse influences on fall risk. This study is the first to examine the preliminary efficacy of an online fall prevention and management intervention for people with MS who use a wheelchair or scooter full-time. iROLL-O has promise, and participants found it valuable. Further efforts are needed to retain iROLL-O participants with lower confidence and functional mobility, and more research is needed to investigate the impact of the intervention on key outcomes over time.

Clinical and Research Applications of the Electronic Medical Record in Multiple Sclerosis: A Narrative Review of Current Uses and Future Applications.

The electronic medical record (EMR) has revolutionized health care workflow and delivery. It has evolved from a clinical adjunct to a multifaceted tool, with uses relevant to patient care and research. A MEDLINE literature review was conducted to identify data regarding the use of EMR for multiple sclerosis (MS) clinical care and research. Of 282 relevant articles identified, 29 were included. A variety of EMR integrated platforms with features specific to MS have been designed, with options for documenting disease course, disability status, and treatment. Research efforts have focused on early diagnosis identification, relapse prediction, and surrogates for disability status. The available platforms and associated research support the utility of harnessing EMR for MS care. The adoption of a core set of discrete EMR elements should be considered to support future research efforts and the ability to harmonize data across institutions.

Nursing Interventions Focusing on Self-efficacy for Patients With Multiple Sclerosis in Rehabilitation: A Systematic Review.

Rehabilitative nursing interventions are vital in the treatment of multiple sclerosis (MS), but there is a lack of evidence on the effectiveness of such interventions. This review aims to summarize outcomes of nurse-led rehabilitation interventions for patients with MS, focusing on patients' self-efficacy and self-management and their satisfaction with the intervention. This review is the first step of our overarching goal of developing, implementing, and evaluating a research-supported nursing consultation intervention in inpatient rehabilitation. We searched 3 databases from their dates of inception until April 2020 (and performed another search in August 2021) for studies involving adult patients diagnosed as having MS. We focused on studies with interventions aimed at self-efficacy and self-management of MS and studies on intervention satisfaction. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. We included 4 studies in this review with a total of 271 participants. All interventions were educational and included training programs. All studies assessed self-efficacy, and all identified an improvement in self-efficacy, particularly through group training interventions. One study focused on self-management, reporting an improvement resulting from the intervention. Two studies evaluating satisfaction with the intervention obtained good overall satisfaction scores from participants, and 1 study's program was strongly recommended by participants. This review indicates that self-efficacy and self-management abilities may be effectively promoted, particularly through group training interventions. An intervention tailored and adapted to the needs of patients with MS may promote satisfaction with the intervention and might consequently improve adherence to rehabilitation interventions.

The Impact of COVID-19 on the Lives of Individuals With Multiple Sclerosis: 1 Year Into the Pandemic

The COVID-19 pandemic resulted in implementation of restrictive public health policies requiring people to limit or avoid interaction with others. These policies also had an economic impact. Individuals with multiple sclerosis (MS) already experience higher incidences of depression, anxiety, social isolation, and job loss, and the continuing pandemic may exacerbate these. Between November 2, 2020, and February 12, 2021, 233 individuals with MS completed the Hospital Anxiety and Depression Scale, the modified Medical Outcomes Study Social Support Survey, the Centers for Disease Control/National Institutes of Health Common Data Element Repository economic impact questions, and study team-designed questions about social and family relationships and adherence to public health policies. Study participants reported high rates of mask wearing, good hand hygiene, and limited interactions with those outside their homes. They felt isolated from family they did not live with, friends, and coworkers. The frequency of conflicts with their spouses/partners increased "a little" among 20% of respondents, but overall relationships with housemates were "unchanged" or "a little better." Ninety-one percent of participants reported experiencing no financial impact. On the Hospital Anxiety and Depression Scale, 16.0% of 218 respondents reported depressive symptoms and 26.8% of 216 reported symptoms of anxiety above the commonly accepted clinically significant cutoff points. Only 3.4% of participants reported contracting SARS-CoV-2. During the first year of the pandemic, this study found no pronounced impact on the emotional, social, or economic stability of the individuals with MS it surveyed. It seems that these study participants adapted to the restrictions created by the pandemic and, by adhering to guidelines, protected themselves from contracting SARS-CoV-2.

Abstracts from the 36th Annual Meeting of the Consortium of Multiple Sclerosis Centers

Abstracts from the 36th Annual Meeting of the Consortium of Multiple Sclerosis Centers

Characteristics of Prescription Drug Use Among Individuals With Multiple Sclerosis in the US Medicare Population.

Few studies have characterized the full spectrum of prescription drug use for individuals with multiple sclerosis (MS). The objective of this study was to describe patterns and expenditures for disease-modifying therapies (DMTs) and other prescription drugs among Medicare beneficiaries with MS. Using Medicare claims data in 2014, we identified a cohort of Medicare beneficiaries with 12 months of continuous eligibility and 3 or more MS-related inpatient, outpatient, or prescription claims. We quantified the number, type, and costs of prescribed DMTs and other medications for MS-related symptoms. Medication costs were calculated according to whether beneficiaries received additional subsidies, which eliminate most out-of-pocket costs. Of 43,283 Medicare beneficiaries identified with MS, 70% were DMT users. Most used self-administered DMTs (67%), and 3% used natalizumab; 93% received a supportive care medication. Among the 82% of individuals without subsidies, the annual median total and out-of-pocket DMT costs were $56,794 (interquartile range [IQR], $44,837-$62,038) and $4566 (IQR, $849-$5270), respectively. The most commonly used supportive care drugs were antidepressants (62%), opioid analgesics (50%), antispasticity drugs (47%), and anticonvulsants (46%). Annual median total and out-of-pocket costs for these drugs were $15,134 (IQR, $6571-$19,620) and $255 (IQR, $56-$877), respectively. Most Medicare beneficiaries with MS using DMTs face considerable out-of-pocket costs. Beneficiaries also used a significant number of medications potentially used for MS-related symptoms, although total and out-of-pocket costs were modest.

Editorial

“We are at war.” This is how French President Emmanuel Macron addressed the nation in March 2020. He was then referring to the pandemic that has caused so many casualties and affected individuals and societies around the world. As we continue to anxiously monitor waves of SARS-CoV-2 variants, a new armed conflict is displacing millions of Ukrainians. There were an estimated 20,000 people living with multiple sclerosis (MS) in Ukraine in 2016, and we know that their ability to get the care they need is adversely affected by this conflict. Our thoughts and prayers go to them and to their loved ones. The Consortium of Multiple Sclerosis Centers’ annual meeting will open in Washington DC on June 1, 2022, 2 days after World MS Day. If you plan to attend the conference, please stop by the International Journal of MS Care (IJMSC) booth in the exhibit hall and meet the editorial team, as well as our new publisher, MJH Life Sciences®. Two awards will be presented during the annual meeting: the Herndon Award for Outstanding IJMSC Article, in honor of our founding editor Robert Herndon, MD, which will recognize the best article published in 2021; and the Promise Award for Best Young Investigator Article, in honor of the late Lael Stone, MD, our second editor, which will recognize the best article first-authored by a young investigator.The current issue of IJMSC features a CE article by Hartung and colleagues on the use of prescription drugs in Medicare beneficiaries in the United States. In addition to reminding us of the significant out of pocket costs related to disease-modifying therapies (DMTs), this study highlights the commonly prescribed medications to treat symptoms and comorbidities associated with MS. While the out of pocket costs for these drugs isn’t as elevated compared with DMTs, it does add to the financial burden of the disease and invites a discussion about the risks associated with polytherapy.These concerns underscore the need for research on nonpharmacological management of consequences of MS, such as the effect of technology-facilitated physical rehabilitation on depressive symptoms, as investigated by Kane and colleagues, or the impact of an app-facilitated behavioral intervention to enhance conscientiousness developed by Fuchs and colleagues.Walking is more onerous to people with MS than to healthy individuals, in terms of oxygen cost. This finding is highlighted by a literature review (Rooney and colleagues) and a cross-sectional study (Manca and colleagues). Other questions about the oxygen cost of walking raised in these articles, such as its relationship with fatigue and the impact of sex, need to be further explored.Bowel dysfunction, while highly prevalent in MS, is seldom addressed in scholarly publications. It is therefore notable that this issue features 2 research articles on this topic. Urology specialists Van Doorn and colleagues propose elements of validation for the Dutch version of the Neurogenic Bowel Dysfunction score. Woodward and colleagues ask a provocative question (“Whose job is it anyway?”) to introduce their report on feedback from healthcare professionals on the care pathway for bowel dysfunction. This question could be asked in relation to many consequences of MS, as the coordination of patient-centered multidisciplinary management is a difficult task, as much influenced by evidence and guidelines as by individual preferences and contextual factors.Let’s keep the discussion going. We invite our readers and contributors to stay in touch with us, possibly in person in June at the CMSC annual meeting or through social media at any time.