MS Care Research Articles

Artificial intelligence will change MS care within the next 10 years: Yes

Artificial intelligence will change MS care within the next 10 years: Yes

Artificial intelligence will change MS care within the next 10 years: No

Artificial intelligence will change MS care within the next 10 years: No

Hybrid and vaccine-induced immunity against SAR-CoV-2 in MS patients on different disease-modifying therapies.

ObjectiveTo compare “hybrid immunity” (prior COVID‐19 infection plus vaccination) and post‐vaccination immunity to SARS CoV‐2 in MS patients on different disease‐modifying therapies (DMTs) and to assess the impact of vaccine product and race/ethnicity on post‐vaccination immune responses.MethodsConsecutive MS patients from NYU MS Care Center (New York, NY), aged 18–60, who completed primary COVID‐19 vaccination series ≥6 weeks previously were evaluated for SARS CoV‐2‐specific antibody responses with electro‐chemiluminescence and multiepitope bead‐based immunoassays and, in a subset, live virus immunofluorescence‐based microneutralization assay. SARS CoV‐2‐specific cellular responses were assessed with cellular stimulation TruCulture IFNγ and IL‐2 assay and, in a subset, with IFNγ and IL‐2 ELISpot assays. Multivariate analyses examined associations between immunologic responses and prior COVID‐19 infection while controlling for age, sex, DMT at vaccination, time‐to‐vaccine, and vaccine product.ResultsBetween 6/01/2021 and 11/11/2021, 370 MS patients were recruited (mean age 40.6 years; 76% female; 53% non‐White; 22% with prior infection; common DMT classes: ocrelizumab 40%; natalizumab 15%, sphingosine‐1‐phosphate receptor modulators 13%; and no DMT 8%). Vaccine‐to‐collection time was 18.7 (±7.7) weeks and 95% of patients received mRNA vaccines. In multivariate analyses, patients with laboratory‐confirmed prior COVID‐19 infection had significantly increased antibody and cellular post‐vaccination responses compared to those without prior infection. Vaccine product and DMT class were independent predictors of antibody and cellular responses, while race/ethnicity was not.InterpretationPrior COVID‐19 infection is associated with enhanced antibody and cellular post‐vaccine responses independent of DMT class and vaccine type. There were no differences in immune responses across race/ethnic groups.

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Updated guidance reflects progress in the care of people living with multiple sclerosis, including treatments and symptom recognition

Timely intervention, monitoring and education MATTERS in MS (TIME MATTERS in MS): Development of a globally applicable quality improvement tool.

BackgroundPreviously, consensus MS care standards were defined by MS specialist neurologists from 19 countries. We developed, piloted and refined an Excel-based quality improvement tool to enable MS services to benchmark against these standards. Here, we examine the refined tool.ObjectiveTo determine the applicability of the quality improvement tool in different healthcare settings.MethodsMS centres across the globe were invited to pilot the quality improvement tool by coding the medical records of 36 adults with MS. We invited feedback on user friendliness, quality improvement tool usefulness and relevance of data collected.ResultsSeventeen centres from 14 countries participated; 14 completed the post-service evaluation survey. Over 50% of responders rated the tool ‘very easy’ or ‘easy’ to use and ‘very relevant’ to their service. Almost 85% of responders (11/13) planned to introduce changes to their service, including improvements in documentation, communication, interactions with colleagues and referrals; 85% would use a future shorter version of the tool.ConclusionsThe quality improvement tool can enable MS centres globally to benchmark their services. Widespread uptake of a shorter tool may help MS centres to work towards achieving consensus standards for brain health-focused care. Incorporation into routine clinical practice would drive adoption.

Digital Performance Measures Show Sensitivity to Demographic and Disease Characteristics in a Multiple Sclerosis Cohort Utilizing the MS Care Connect Mobile App in a Real-world Setting (P18-4.004)

Digital Performance Measures Show Sensitivity to Demographic and Disease Characteristics in a Multiple Sclerosis Cohort Utilizing the MS Care Connect Mobile App in a Real-world Setting (P18-4.004)

The Expanding Role of the Infectious Disease Expert in the Context of the MS Centre.

Introduction: The complexity of the MS patient’s management is constantly growing. Consequently, the MS care unit requires a multidisciplinary approach, including an infectious disease specialist to minimise the risk of infectious complications related both to the disease and DMTs. Materials and methods: We retrospectively evaluated the infectious disease consultations performed from 2015 to 2019 in our MS centre. Results: We identified 107 patients with at least one infectious disease consultation out of 1088 patients. We found a progressive increase in the number of consultations from 2015 to 2019. Nearly half of the consultations were requested at the time of starting MS treatment. The most frequent requests were represented by chronic or acute infections. The most prevalent infectious agents were Herpesviridae and Mycobacterium tuberculosis. Antibiotic or antiviral treatment and prophylactic treatment or vaccination represented together the most frequent outcomes of the consultations. Finally, a treatment delay was significantly associated with the advice of a prophylactic treatment or of a vaccination. Conclusion: There is an increasing awareness of the potential infectious complications of MS and of exposure to DMTs. The interaction between the MS neurologist and infectious disease specialist is fundamental to minimise the infectious risk related to the disease and to the DMTs, with a progressive shift from complication management to a broader prevention workup at the time of MS diagnosis, including both vaccination and prophylactic treatments.

The agenda of the global patient reported outcomes for multiple sclerosis (PROMS) initiative: Progresses and open questions

On 12 September 2019, the global Patient Reported Outcome for Multiple Sclerosis (PROMS) Initiative was launched at the 35th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The multi-stakeholder PROMS Initiative is jointly led by the European Charcot Foundation (ECF) and the Multiple Sclerosis International Federation (MSIF), with the Italian Multiple Sclerosis Society (AISM) acting as the lead agency for and on behalf of the global MSIF movement. The initiative has the ambitious mission to (i) maximize the impact of science with and of patient input on the life of people affected by MS, and (ii) to represent a unified view on Patient-Reported Outcomes for MS to people affected by MS, healthcare providers, regulatory agencies and Health Technologies Assessments agencies. Equipped with an innovative participatory governance of an international and interdisciplinary network of different stakeholders, PROMS has the potential to guide future breakthroughs in MS patient-focused research and care. In this paper we present the progresses of the global PROMS Initiative and discuss the open questions that we aim to address.

A national, multi-center study in Germany to assess implementation of infusion management, treatment satisfaction and quality of life in MS patients receiving alemtuzumab

BackgroundAlemtuzumab is an anti-CD52 antibody approved for the treatment of relapsing remitting multiple sclerosis (RRMS). The summary of product characteristics (SmPC) provides recommendations on the administration of alemtuzumab to prevent or reduce the risk of serious side effects associated with alemtuzumab infusion, including myocardial ischemia, hemorrhagic stroke, arterial dissection, and pulmonary alveolar hemorrhage. However, real-world implementation of alemtuzumab infusion management recommendations has not been previously assessed. MethodsHere we provide a large-scale multi-center (in- and outpatient) observational study on alemtuzumab infusion management in daily clinical care in Germany (ALEMLL08025; INFUSE-MS; NIS-no. 364). Parameters of infusion management - including infusion administration, clinical and laboratory monitoring - were assessed, compared between study centers and the occurrence of infusion-associated reactions (IARs) was documented. Moreover, the TSQM and MSIS-29 questionnaires were used to quantify patient satisfaction and health-related quality of life. Results140 RRMS patients were enrolled in this study. Alemtuzumab infusion regimes (treatment course 1 and 2) were comparable between infusion sites and in accordance with recommendations by the SmPC. Standardization of infusion management was associated with a satisfactory safety profile. IARs were usually mild, headache (13.6%), rash (10.7%), and pyrexia (6.4%) being the most common ones. TSQM and MSIS-29 scores denoted high patient satisfaction and health-related quality of life among RRMS patients treated with alemtuzumab. ConclusionIn conclusion, our results indicate that infusion management of alemtuzumab is highly standardized and in line with the SmPC. Alemtuzumab treatment and implementation of infusion management recommendations are associated with a satisfactory safety profile regarding the occurrence of IARs, a high patient satisfaction and health-related quality of life as important indicators for the quality of MS care.

Healthcare Disruptions and Use of Telehealth Services Among People With Multiple Sclerosis During the COVID-19 Pandemic

ObjectiveThe current study examined health care disruptions and use of telehealth services among people with multiple sclerosis (pwMS) during the COVID-19 pandemic. DesignCross-sectional survey. SettingGeneral community. ParticipantsParticipants (N=163) included 70 pwMS and 93 healthy controls (HCs). The majority of respondents were from the United States (88%). InterventionsNot applicable. Main Outcome MeasuresRates of health care disruptions (eg, missing/canceling appointments, experiencing delays) and telehealth use for MS and non-MS medical care and mental health care. ResultsIn this U.S. majority, predominantly White, and high socioeconomic status sample, 38% to 50% of pwMS reported experiencing disruptions in their MS and non-MS medical care and 20% to 33% reported disruptions in their mental health care; this was significantly lower than the rates observed among HCs. Compared with HCs, pwMS were more likely to use telehealth than in-person services, especially for mental health care. The majority of pwMS and HCs reported being satisfied with telehealth services. Individuals with higher degrees of functional limitation experienced more health care disruptions and were more likely to use telehealth services than individuals with lower degrees of functional limitation. ConclusionsDespite high health care disruption rates, pwMS frequently used and were highly satisfied with telehealth services during the COVID-19 pandemic. Due to physical limitations commonly observed in the MS population that may preclude travel, telehealth services should be continued even after resolution of the pandemic to expand access and reduce health care disparities.

Exercise Training for Multiple Sclerosis: A Narrative Review of History, Benefits, Safety, Guidelines, and Promotion.

Background: There have been significant advances in the medical treatment and management of multiple sclerosis pathogenesis, relapse and disease progression over the past 30 years. There have been advancements in the symptomatic treatment of multiple sclerosis, including management of secondary multiple sclerosis expressions such as walking, cognitive dysfunction, fatigue and depression. Scientific evidence and expert opinion suggest that exercise may be the single most effective non-pharmacological symptomatic treatment for multiple sclerosis. This article presents the historical context of exercise training within the multidisciplinary management of multiple sclerosis. We guide neurologists and healthcare providers on the recommended prescription of exercise and practical, theoretical methods to overcome barriers to exercise. Method: We undertook a critical search of the historical and current literature regarding exercise and multiple sclerosis from the viewpoint of exercise promotion by neurologists and the multidisciplinary care team. Results: We highlight the ever-strengthening body of research indicating that exercise is safe and effective for improving symptoms of multiple sclerosis. Further, exercise training may be necessary for reducing disease progression. Conclusion: We seek to encourage neurologists and specialists in multidisciplinary healthcare teams to prescribe and promote exercise at diagnosis and across all stages of the disease trajectory using prescriptive guidelines as part of comprehensive MS care. Available tools include clinical education to dispel any historical myths related to exercise in multiple sclerosis, clinical exercise guidelines and behaviour change theory to overcome patients barriers to exercise.

ECTRIMS 2021 – Late Breaking News ePoster

Objective: To compare humoral and T-cell responses to COVID- 19 vaccines in 400 MS patients who were on Ocrelizumab ('OCR') v. other disease-modifying therapies ('non-OCR') at the time of vaccination. Introduction: Peripheral B-cell depletion with anti-CD20 therapies attenuates humoral responses to vaccines. Whether immune responses to COVID-19 vaccines differ between B-cell depleted and non-B cell depleted MS patients is not known. Methods: Consecutive MS patients from NYU MS Care Center were invited to participate if they completed COVID-19 vaccination ≥6 weeks previously. Immune testing included anti-spike RBD antibody (Elecsys Anti-SARS-CoV-2) (Roche Diagnostics);multiplex bead-based immunoassays of antibody-responses to SARS-COV-2 spike proteins;T-cell responses to SARS-CoV-2 Spike protein using IFNγ enzyme-linked immune-absorbent spot (Invitrogen) and TruCulture (Myriad RBM) assays;high dimensional immunophenotyping;and live virus immunofluorescencebased microneutralization assay. Results: As of 7/15/2021, 105 MS subjects were enrolled (mean age: 40.5 years;76% female;41% non-white;38% on OCR;12% with prior COVID-19 infection). 95% were fully vaccinated with mRNA vaccines (Pfizer/Moderna);5% - with adenovirus-based vaccine (JohnsonJp<0.0001). Positive response by multiplex assay (threshold of 'positive' defined as 2 SD below the mean for the non-OCR) were detected in 10/27 (37%) OCR and 29/31 (94%) non-OCR (p<0.00001). T-cell activation based on induced IFNγ secretion (TruCulture) was detected in 20/25 (80%) OCR and 16/19 (84%) non-OCR patients (p=0.71). Conclusions: Preliminary results suggest robust T-cell immune response to SARS-CoV2 vaccines in approximately 80% of both OCR and non-OCR MS patients. Antibody responses were markedly attenuated in OCR compared to non-OCR group. Updated results will be presented.

Mobile Attention Bias Modification Training Is a Digital Health Solution for Managing Distress in Multiple Sclerosis: A Pilot Study in Pediatric Onset.

Introduction: Emotional health is important dimension of care for patients living with pediatric onset multiple sclerosis (POMS), but few options are available for stress and anxiety reduction. The high burden of interventions requiring regular in person and onsite visits for treatment are less feasible. Attention bias modification training (ABMT) is effective for anxiety reduction in adult and adolescent populations. We tested the feasibility and preliminary efficacy of ABMT delivered through a mobile gamified version as a digital emotional health tool for patients with POMS.Methods: Participants with POMS were consecutively recruited from the NYU Langone Pediatric MS Care Center and enrolled to complete a 1-month intervention with use of the Personal Zen ABMT app on their mobile personal device. Feasibility was evaluated by use of the 1-month intervention and efficacy was measured by changes in depression, anxiety, and affect.Results: A total n = 35 patients with POMS were enrolled in the study (Mage = 17.7, SD = 2.2 years, range 14–23). Feasibility criteria were met with 74% completing the full intervention time, and 100% of the sample completing at least 50% of targeted intervention use. Initial efficacy was found for a reduction in negative affect from baseline to intervention end [M = 22.88, SD = 9.95 vs. M = 19.56, SD = 7.37; t(33) = 2.47, p = 0.019]. Anxiety also significantly decreased from pre to post-intervention in adults [M = 11.82, SD = 9.90 vs. M = 7.29, SD = 7.17; t(16) = 3.88, p = 0.001] and youth [M = 51.14, SD = 19.66 vs. M = 40.86, SD = 27.48; t(13) = 3.17, p = 0.007].Conclusion: Mobile ABMT with the Personal Zen app is a feasible and accessible digital emotional health tool for patients with POMS and may have broader application for managing distress across chronic neurological conditions.

Longitudinal changes of financial hardship in patients with multiple sclerosis

Objective: To measure the longitudinal changes in three domains of financial hardship (i.e., financial worry, cost-related care non-adherence, material hardship) in patients with MS. Methods: A convenience sample of 559 adult patients with a known diagnosis of MS visiting a single outpatient neurology clinic between July 2018 to February 2020 were approached. Patients completed surveys at baseline and 3, 6, 9, and 12 months post-enrollment. Outcomes included financial worry (using Comprehensive Score for Financial Toxicity Patient-Reported Outcome (COST)), cumulative cost-related care non-adherence, and cumulative financial hardship as adopted by Medical Expenditure Panel Survey (MEPS). Associations of financial worry with care non-adherence and material hardship were assessed using ANOVA. Results: A total of 242 (43.3%) participated at baseline. Mean age was 43.6 ± 13.6 years (76.9% female; 46.4% White); median months from diagnosis was 63 (IQR, 28–120). The mean COST score at enrollment was 17.43 (± 10.15) and increased to 19.41 (± 11.12) at 12 months (p = 0.09). Cumulative cost-related MS care non-adherence increased from 32.6% at baseline to 53.3% at 12 months (20.7% increase; p <0.001). Cumulative material hardship increased from 61.6% at baseline to 76.0% at 12 months (14.4% increase; p<0.001). Changes in COST score from baseline to 12 months were significantly associated with changes in non-adherence and material hardship (p<0.01). Conclusion and relevance: Cost-related care non-adherence and material hardship accumulate progressively over time and correlates with financial worry. Clinical practices should focus on screening those at risk and intervene with the goal of mitigating costs of care and improving patient outcomes.

Mobile-phone-based e-diary derived patient reported outcomes: Association with clinical disease activity, psychological status and quality of life of patients with multiple sclerosis.

BackgroundThe applicability of mobile digital technology to promote clinical care of people with multiple sclerosis (pwMS) is gaining increased interest as part of the implementation of patient-centered approaches. We aimed at assessing adherence to a smartphone-based e-diary, which was designed to collect patient-reported outcomes (PROs). Secondary objectives were to evaluate the construct and predictive validity of e-diary derived PROs and to explore the various factors that were associated with changes in PROs over time.Materials and methodsIn this observational cohort study patients downloaded an MS tailored e-diary into their personal smartphones. Report of PROs was enquired once monthly for a period of one year through a smartphone-based application, using previously validated tools. An e-diary derived bodily function summary score (eBF) was defined as the sum of scores depicting vision, limbs function, pain, bowl/ bladder dysfunction, pseudobulbar affect and spasticity. Multiple linear regression and analysis of covariance were used to determine the association between PROs, clinician-reported outcomes (ClinROs) of disease activity and quality of life (QoL). Regression coefficient analysis was used to compare the slope of change in eBF before and after a relapse.Results97 pwMS downloaded the e-diary [Female: 64 (66%), EDSS 3.4±2.1]. 76 patients (78%) completed the 12-month study period. 53 patients (55%) submitted ≥75% of requested surveys. Anxiety was negatively associated with adherence to periodic PROs assessments by the e-diary. E-diary derived PROs were significantly correlated with corresponding functional system scores (0.38< r <0.8, P<0.001). eBF score significantly predicted QoL (β = -0.36, P = 0.001) while EDSS did not. Change in eBF score over time was independently associated with the occurrence of an MS relapse (F = 4.4, P = 0.04), anxiety (F = 6.4, P = 0.01) and depression (F = 5.1, P = 0.03). Individual regression slopes of eBF scores were significantly higher pre-relapse than post-relapse (3.0±3.3 vs. -0.8±2.0, P = 0.007).ConclusionAdherence of pwMS to recording in an e-diary collecting PROs was high. Changes in e-diary derived PROs over time predict clinical MS relapses on the group level and thus carry the potential of usage in clinical research as well as for improved MS care in real world setting.

Identifying Gaps in Knowledge, Skills and Confidence among MS Specialists to Facilitate Improved MS Care (1732)

Identifying Gaps in Knowledge, Skills and Confidence among MS Specialists to Facilitate Improved MS Care (1732)

Reflecting on the first virtual MS Trust Conference, 2021

The MS Trust conference is a fantastic event for MS health professionals to come together to learn, share expertise and focus on improving care for everyone affected by MS. Conference provides an opportunity for MS teams to update their knowledge on the latest developments in MS care and treatment and to network with other health professionals who share a special interest in MS. 2021 was the year to go virtual for this event for the very first time to continue this legacy.

Integrating patient-reported outcomes and quantitative timed tasks to identify relapsing remitting multiple sclerosis patient subgroups: a latent profile analysis

BackgroundMultiple sclerosis (MS) patients experience wide-ranging symptoms with varied severity, and approaches that integrate patient-reported outcomes and objective quantitative measures will present opportunities for advancing clinical profiling. The primary objective of the current study was to conduct exploratory data analysis using latent variable modeling to empirically identify clusters of relapsing remitting (RR) MS patients with shared impairment patterns across three patient-reported outcomes and two timed task measures. MethodsLatent profile analyses and impairment data for 2,012 RRMS patients identified distinct patient clusters using timed task measures of upper and lower limb performance, and patient-reported outcomes measuring quality of life, depression symptom severity, and perceived global disability. Multinomial logistic regression models were used to characterize associations between socio-demographic attributes and assignment to the patient clusters. ResultsThere were 6 distinct clusters of RRMS patients that differed by symptom patterns, and by their socio-demographic attributes. Most notable were were no differences in age, sex, or disease duration between the least and most impaired classes, representing 14% and 4% of patients, respectively. Patients in the most impaired class were much more likely to be Black American, have a history of smoking, have a higher body mass index, and be of lower socioeconomic status than the least impaired class. There were positive relationships between age and classification to clusters of increasing moderately severe impairment but not the most severe clusters. ConclusionWe present a framework for discerning phenotypic impairment clusters in RRMS. The results demonstrate opportunities for advancing clinical profiling, which is necessary for optimizing personalized MS care models and clinical research.

Specific dietary interventions to tackle obesity should be a routine part of recommended MS care – Commentary

Specific dietary interventions to tackle obesity should be a routine part of recommended MS care – Commentary

Specific dietary interventions to tackle obesity should be a routine part of recommended MS care – No

Specific dietary interventions to tackle obesity should be a routine part of recommended MS care – No