People With Multiple Sclerosis Research Articles

The cost-of-illness of multiple sclerosis in Jordan

ABSTRACT Background Multiple Sclerosis (MS) is a chronic neurological autoimmune disease that imposes a significant financial burden on healthcare systems. This study aims to determine the cost of illness for MS in Jordan, a country where data on the economic impact of MS are scarce. The objective of this study is to assess both direct and indirect costs associated with MS care in Jordan’s public healthcare system. Methods Data were collected during the year 2020–2021, annual cost of illness was estimated using a cross-sectional snowball sampling design. Eligible patients completed a self-reported questionnaire to provide sociodemographic, physician visit, and diagnostic and laboratory test data. We estimated indirect costs using an adjusted Human Capital Approach. Results This study included 383 people with MS (PwMS), 73.1% of whom were female and 61.4% between 26 and 45. Nearly 79.6% of PwMS took Disease Modifying Therapies (DMTs), and 40% had relapses in the year 2020-2021. One-third use non-DMTs and equipment for assistance like canes and walkers. The average annual cost per patient was 11,719 USD, with direct costs amounting to 11,252 USD and indirect costs at 467 USD. The total cost for all participants was 748,299 USD. The estimated cost of non-DMT, medical tools, diagnostic tests, and hospitalization per patient was 53 USD, 51 USD, 99 USD, and 235 USD respectively. Conclusion The high costs for Disease Modifying Therapies (DMTs) state the necessity of resource optimization in Jordan public healthcare facilities. Such findings yield policy-informing actionable insights, suggesting strategic investments in more cost-effective DMTs with potential improvement in accessibility and reduction in the overall economic burden faced by both patients and governments.

Cladribine use trend in Latin America: the changes in patient profile impact in the drug effectiveness.

Cladribine was approved for Multiple Sclerosis (MS) inour country in 2018. A previous study by our group showed that its use among high efficacy therapiesoptions has been increasing along the years. to analyze the cladribineuse trend across time since its approval. A retrospective cohort study was performed. People withMS (pwMS) treated with cladribinewere included. Two periods were defined: P1 = 2018 - 2020 and P2 = 2021 - 2023. A comparative analysis was carry outbetween P1and P2 to assessthe trend of use, clinical/demographic characteristics, and effectiveness. One hundred ninety- seven people with MS (pwMS) were included, mean EDSS: 2.2 ± 3.08, 72.6% female, mean age: 35.2 ± 9years, mean disease duration: 6.6 ± 5.6years, mean time lapse under cladribine: 26.1 ± 12.4months. Regarding patient profile, we found significant differences between P1 and P2 in the MS evolution (p = 0.001) and EDSS (p = 0.018) prior to initiation of cladribine.In the individualized analysis by year, we found a decrease in relapse number in the year prior to starting cladribine (p = 0.02). Ahigher proportion of No Evidence of Disease Activity (NEDA) was found in patients treated at P2 compared to those treated at P1 (p < 0.001). An earlier use of cladribineachieved a significant increase in reaching NEDA. This learning curve in the use of cladribine allows a better identification of the candidate patient and influences the treatment effectiveness.

A phase II trial examining the safety and preliminary efficacy of repetitive transcranial magnetic stimulation (rTMS) for people living with multiple sclerosis

BackgroundMultiple sclerosis (MS) is a chronic neurological condition and the leading cause of non-traumatic disability in young adults. MS pathogenesis leads to the death of oligodendrocytes, demyelination, and progressive central nervous system neurodegeneration. Endogenous remyelination occurs in people with MS (PwMS) but is insufficient to repair the damage. Our preclinical studies in mice indicate that endogenous remyelination can be supported by the delivery of repetitive transcranial magnetic stimulation (rTMS). Our phase I trial concluded that 20 sessions of rTMS, delivered over 5 weeks, are safe and feasible for PwMS. This phase II trial aims to investigate the safety and preliminary efficacy of rTMS for PwMS.MethodsParticipants must be aged 18–65 years, diagnosed with MS by a neurologist, stable and relapse free for 6 months, have an Extended Disability Status Scale (EDSS) between 1.5 and 6 (inclusive), willing to travel to a study site every weekday for 4 consecutive weeks, and able to provide informed consent and access the internet. Participants from multiple centres will be randomised 2:1 (rTMS to sham) stratified by sex.The intervention will be delivered with a Magstim Rapid2 stimulator device and circular 90-mm coil or MagVenture MagPro stimulator device with C100 circular coil, positioned to stimulate a broad area including frontal and parietal cortices. For the rTMS group, pulse intensity will be set at 18% (MagVenture) or 25% (Magstim) of maximum stimulator output (MSO), and rTMS applied as intermittent theta burst stimulation (iTBS) (~ 3 min per side; 600 pulses). For the sham group, the procedure will be the same, but the intensity is set at 0%. Each participant will attend 20 intervention sessions over a maximum of 5 weeks.Outcome measures include MS Functional Composite Score (primary), Fatigue Severity Scale, Hospital Anxiety and Depression Scale, Quality of Life, and Pittsburgh Sleep Quality Index/Numeric Rating Scale and adverse events (secondary) and advanced MRI metrics (tertiary). Outcomes will be measured at baseline and after completing the intervention.DiscussionThis study will determine if rTMS can improve functional outcomes or other MS symptoms and determine whether rTMS has the potential to promote remyelination in PwMS.Trial registrationRegistered with Australian New Zealand Clinical Trials Registry, 20 January 2022; ACTRN12622000064707.

A taxonomy of cognitive phenotypes in Multiple Sclerosis: a 1-year longitudinal study

As meaningful measure of cognitive impairment (CI), cognitive phenotypes provide an avenue for symptom management and individualized rehabilitation. Since CI is highly variable in severity and progression, monitoring cognitive phenotypes over time may be useful to identify trajectory of cognitive decline in Multiple Sclerosis (MS). Based on cognitive and mood information from patient-reported outcomes (PROs) and clinician-assessed outcomes (CAOs), four cognitive subgroups of people with MS (PwMS) were identified: phenotype 1 (44.5%) showed a preserved cognitive profile; phenotype 2 (22.8%) had a mild-cognitive impairment profile with attention difficulties; phenotype 3 (24.3%) included people with marked difficulties in visuo-executive, attention, language, memory and information processing speed; lastly, phenotype 4 (8.4%) grouped individuals with a multi-domain impairment profile (visuo-executive, attention, language, memory, orientation, information processing speed and mood disorders). Although some fluctuations occurred considering the rate of impairment, cognitive phenotypes did not substantially vary at follow up in terms of type and number of impairments, suggesting that 1 year is a relatively brief temporal window to observe considerable changes. Our results corroborate that investigating cognitive phenotypes and their stability over time would provide valuable information regarding CI and, in addition, increase clinical importance of PROs and CAOs and their uptake in decision-making and individualized treatment planning for PwMS.

Reliability and validity of the L test in people with multiple sclerosis

ObjectivesFunctional mobility is an essential factor affecting the activities of daily living in people with multiple sclerosis (PwMS). The L test is a comprehensive assessment tool for functional mobility that incorporates sit-to-stand, transfers and bidirectional turning. The purpose of this study was to determine the psychometric properties of the L test in PwMS. DesignCross-sectional study. ParticipantsThirty-four PwMS [Expanded Disability Status Scale (EDSS) score 0 to 5] and 34 healthy controls were included in this study. Main outcome measuresThe L test was administered along with the timed up and go (TUG) test, 10-m walk test (10-MWT), 6-minute walk test (6-MWT), timed 360 degree turn test, and EDSS by the same rater. Fall history was recorded to categorize PwMS with and without a history of falls. The L test was repeated after 1 week to determine test–retest reliability. ResultsThe L test showed excellent test–retest reliability (intraclass correlation coefficient 0.995). The minimum detectable change for the L test time was 1.4s. The L test demonstrated significant positive correlations with the TUG test, timed 360 degree turn test and EDSS score, and significant negative correlations with the 10-MWT and 6-MWT (P<0.001). Significant differences in the L test times were found between PwMS and healthy controls, and between PwMS with a history of falls and those without a history of falls (P<0.05). The cut-off time of 14.7s on the L test was found to best discriminate between PwMS and healthy people, while 16.4s was found to best discriminate between PwMS with a history of falls and those without a history of falls. ConclusionThe L test is a reliable and valid tool for the assessment of functional mobility in PwMS. Clinical Trial Registration numberNCT05641714 Contribution of the paper•The L test has excellent test–retest reliability and validity in PwMS.•The L test can provide insight into functional mobility, with high scores (long completion times) warranting further specific assessment of underlying components (turning, walking, etc.) that may contribute to the longer completion times.•The L test demonstrates a more comprehensive mobility assessment using an L-shaped pathway.

Prospective Memory Complaints Are Related to Objective Performance in People With Multiple Sclerosis

ObjectivesTo examine the association between subjective and objective prospective memory (PM) in people with multiple sclerosis (PwMS). DesignSecondary analysis of a cross-sectional cohort study. SettingCommunity-based comprehensive multiple sclerosis center. ParticipantsPwMS (N=112) who completed a battery that included measures of PM, depression, and fatigue. InterventionsNot applicable. Main Outcome MeasuresObjective PM was measured with the performance-based Memory for Intentions Test (MIST), whereas subjective PM was assessed with the self-report Perceived Deficits Questionnaire-Prospective Memory (PDQ-PM). ResultsPwMS had low scores on the PDDS (median=2) and HADS-D (median=5.29), with 26.8% scoring 1 standard deviation or lower (≤15th percentile) on the MIST. Objective PM was significantly associated with subjective PM in a multivariate model (β=−0.18, P=.036), which accounted for demographics, physical disability, retrospective memory, and depressive and fatigue severity. Physical disability, depression, and fatigue were also significant contributors to subjective PM. Time-based PM performance emerged as the specific component that was associated with subjective PM. ConclusionsThese findings suggest that among PwMS with relatively mild impairment and symptomatology, their objective PM performance was associated with their self-assessments, even when considering retrospective memory and factors that influence their cognitive perceptions. The results expand upon the subjective-objective cognition discrepancy literature in multiple sclerosis and highlights how the PDQ-PM could be used as a complementary measure to help identify difficulties with PM.

The role of fatigue in attentional processing in multiple sclerosis: data from event-related potentials.

Fatigue is an extremely common symptom in in people with multiple sclerosis (PwMS) and has a severe impact on quality of life. The purpose of the present study was to verify whether fatigue in PwMS is associated with a selective covert attention impairment, as measured by event-related potentials and to assess whether it is more associated with an impairment of top-down or bottom-up attentional control. Twenty-two PwMS and fatigue-MSF, 17 without fatigue-MSnF and 35 healthy volunteers underwent a three-stimulus P300 novelty task that elicits both the P3a and the P3b components. P3b latency was comparable between groups, but PwMS, independently from the presence of fatigue displayed significantly greater P3b amplitudes. P3a latency was significantly prolonged in MSF alone, while P3a amplitude in MSnF group was greater than controls. MSF were able to categorize the task-relevant target stimulus but the orienting response to a novel salient stimulus was delayed, indicating an impairment in bottom-up attentional control mechanism related to ventral attention network. Fatigue is selectively associated with a covert attentional deficit related to the ability to reallocate attentional resources to salient stimuli, a crucial function of adaptive decision-making behaviour.

Immunogenicity, clinical efficacy, and safety of the sinopharm (BBIBP-CorV) SARS-CoV-2 vaccine among people with multiple sclerosis receiving disease-modifying therapies: a prospective cohort study

BackgroundTo investigate the safety (adverse events [AEs] and post-vaccination multiple sclerosis [MS] activity within 6 weeks), clinical efficacy (protection against coronavirus disease 2019 [COVID-19]), and vaccine-induced humoral immunogenicity (SARS-CoV-2 neutralizing antibody, anti-nucleocapsid IgG, and anti-spike IgG) of the Sinopharm (BBIBP-CorV) vaccine among people with MS (PwMS) receiving different disease-modifying therapies (DMTs).MethodsThis prospective cohort study was conducted between November 2021 and May 2022. PwMS were followed for six months after the 2nd dose of vaccination. Antibody responses were measured 2–16 weeks after the 2nd dose injection. Multivariate logistic regression was employed to assess the impact of each DMT on dichotomous antibody responses, adjusting for age, sex, MS phenotype, expanded disability status scale, disease duration, and vaccination-antibody titration interval.ResultsAmong the 261 screened PwMS, 209 (aged 38.23 ± 9.73 years, female: 70.8%; relapsing-remitting MS: 80.4%) were included. The frequencies of experiencing non-serious AEs and post-vaccination MS activity were 66.0% and 4.8%, respectively. Breakthrough COVID-19 infection was observed in 14.8% of the PwMS. A subcohort of 125 PwMS was assessed for antibody responses. Positive neutralizing antibodies, anti-nucleocapsid IgG, and anti-spike IgG were detected in 36.8%, 35.2%, and 52.0% of the PwMS, respectively. Multivariate regression indicated a 96% (OR: 0.04 [95% CI: 0.00, 0.51], P = 0.013), 93% (OR: 0.07 [0.01, 0.64], P = 0.019), and 89% (OR: 0.11 [0.01, 0.96], P = 0.045) reduced odds of positive neutralizing antibody, anti-nucleocapsid IgG, and anti-spike IgG, respectively, among fingolimod-receivers. Additionally, anti-CD20s-receivers had 88% (OR: 0.12 [0.02, 0.85], P = 0.034) lower odds of being positive for anti-nucleocapsid IgG.ConclusionsBBIBP-CorV appeared to be well tolerated in PwMS, with promising clinical efficacy. However, a suboptimal humoral response was observed in PwMS receiving fingolimod and anti-CD20s. Future research should investigate the relationship between humoral responses and the frequency and severity of COVID-19 infection across various DMTs.

"PTSD symptoms among patients with multiple sclerosis in Jordan during October 7th gaza war outbreak".

Clinicians have noted that the ongoing war on Gaza has had a psychological impact on people with multiple sclerosis (PwMS) whose mental health is particularly vulnerable during times such as these. The present study sought to examine the prevalence and correlates of posttraumatic stress disorder (PTSD) symptoms among PwMS in Jordan during the Gaza war outbreak. This was a cross-sectional study involving 171 patients (PwMS) out of 372 patients approached (46% response rate) who were being seen in the MS unit at Al Bashir Hospital, Ammann, Jordan. Inclusion criteria required that participants had been following daily news updates of the October 7 war in Gaza for the past 4 months. Of participants, 125 (73.1%) were female, 98 (57.3%) were on therapy for less than five years, and 30 (17.5%) reported having a relapse during the past 6 months. Significant PTSD symptoms were identified in 58.5% (100 of 171 participants). Those at higher risk were the unemployed (OR = 2.14, 95% CI = 1.13-4.07, P = 0.02), whereas patients receiving dimethyl fumarate (19.9%) were at lower risk (OR = 0.43, 95% CI = 0.19-0.94, P = 0.02). The high rate of significant PTSD symptoms among people with MS in this study underscores the need for attention by primary care providers and implementation of a comprehensive multidisciplinary approach to optimize the mental well-being of this fragile population.

Management of Bladder and Bowel Dysfunction in Patients with Multiple Sclerosis

Bladder and bowel dysfunctions are common in patients with multiple sclerosis (MS) and negatively affect their quality of life. Bladder dysfunction, which is prevalent in people with MS (PwMS), can impact almost all patients within 10 years after diagnosis. Conservative, medical, and electrical stimulation approaches are used in the treatment of these problems. Bladder dysfunction in patients with multiple sclerosis can lead to issues such as fluid intake restriction, withdrawal from work life, inability to socialize, and the need for constant use of pads, resulting in a depressive lifestyle. Bowel dysfunction in patients with multiple sclerosis can manifest as fecal incontinence and/or constipation, which can also negatively affect patients' quality of life. Various approaches are utilized in the management of bladder and bowel dysfunction. Multiple sclerosis nurses play a key role in the multidisciplinary team for the diagnosis, treatment, and follow-up of patients' bladder and bowel symptoms. Effective nursing care, education, and counseling in the management of these symptoms enhance the comfort of patients with multiple sclerosis. In this review, the bladder and bowel dysfunctions experienced by patients with multiple sclerosis and the management of these problems are discussed in line with current knowledge.

A machine learning approach to determine the risk factors for fall in multiple sclerosis

BackgroundFalls in multiple sclerosis can result in numerous problems, including injuries and functional loss. Therefore, determining the factors contributing to falls in people with Multiple Sclerosis (PwMS) is crucial. This study aims to investigate the contributing factors to falls in multiple sclerosis using a machine learning approach.MethodsThis cross-sectional study was conducted with 253 PwMS admitted to the outpatient clinic of a university hospital between February and August 2023. A sociodemographic data collection form, Fall Efficacy Scale (FES-I), Berg Balance Scale (BBS), Fatigue Severity Scale (FSS), Expanded Disability Status Scale (EDSS), Multiple Sclerosis Impact Scale (MSIS-29), and Timed 25 Foot Walk Test (T25-FW) were used for data collection. Gradient-boosting algorithms were employed to predict the important variables for falls in PwMS. The XGBoost algorithm emerged as the best performed model in this study.ResultsMost of the participants (70.0%) were female, with a mean age of 40.44 ± 10.88 years. Among the participants, 40.7% reported a fall history in the last year. The area under the curve value of the model was 0.713. Risk factors of falls in PwMS included MSIS-29 (0.424), EDSS (0.406), marital status (0.297), education level (0.240), disease duration (0.185), age (0.130), family type (0.119), smoking (0.031), income level (0.031), and regular exercise habit (0.026).ConclusionsIn this study, smoking and regular exercise were the modifiable factors contributing to falls in PwMS. We recommend that clinicians facilitate the modification of these factors in PwMS. Age and disease duration were non-modifiable factors. These should be considered as risk increasing factors and used to identify PwMS at risk. Interventions aimed at reducing MSIS-29 and EDSS scores will help to prevent falls in PwMS. Education of individuals to increase knowledge and awareness is recommended. Financial support policies for those with low income will help to reduce the risk of falls.

Machine-learning-based prediction of disability progression in multiple sclerosis: An observational, international, multi-center study.

Disability progression is a key milestone in the disease evolution of people with multiple sclerosis (PwMS). Prediction models of the probability of disability progression have not yet reached the level of trust needed to be adopted in the clinic. A common benchmark to assess model development in multiple sclerosis is also currently lacking. Data of adult PwMS with a follow-up of at least three years from 146 MS centers, spread over 40 countries and collected by the MSBase consortium was used. With basic inclusion criteria for quality requirements, it represents a total of 15, 240 PwMS. External validation was performed and repeated five times to assess the significance of the results. Transparent Reporting for Individual Prognosis Or Diagnosis (TRIPOD) guidelines were followed. Confirmed disability progression after two years was predicted, with a confirmation window of six months. Only routinely collected variables were used such as the expanded disability status scale, treatment, relapse information, and MS course. To learn the probability of disability progression, state-of-the-art machine learning models were investigated. The discrimination performance of the models is evaluated with the area under the receiver operator curve (ROC-AUC) and under the precision recall curve (AUC-PR), and their calibration via the Brier score and the expected calibration error. All our preprocessing and model code are available at https://gitlab.com/edebrouwer/ms_benchmark, making this task an ideal benchmark for predicting disability progression in MS. Machine learning models achieved a ROC-AUC of 0⋅71 ± 0⋅01, an AUC-PR of 0⋅26 ± 0⋅02, a Brier score of 0⋅1 ± 0⋅01 and an expected calibration error of 0⋅07 ± 0⋅04. The history of disability progression was identified as being more predictive for future disability progression than the treatment or relapses history. Good discrimination and calibration performance on an external validation set is achieved, using only routinely collected variables. This suggests machine-learning models can reliably inform clinicians about the future occurrence of progression and are mature for a clinical impact study.

Diagnoses and Treatment Recommendations-Interrater Reliability of Uroflowmetry in People with Multiple Sclerosis.

Uroflowmetry (UF) is an established procedure in urology and is recommended before further investigations of neurogenic lower urinary tract dysfunction (NLUTD). Some authors even consider using UF instead of urodynamics (UD). Studies on the interrater reliability of UF regarding treatment recommendations are rare, and there are no relevant data on people with multiple sclerosis (PwMS). The aim of this study was to investigate the interrater reliability (IRR) of UF concerning diagnosis and therapy in PwMS prospectively. UF of 92 PwMS were assessed by 4 raters. The diagnostic criteria were normal findings (NFs), detrusor overactivity (DO), detrusor underactivity (DU), detrusor-sphincter dyssynergia (DSD) and bladder outlet obstruction (BOO). The possible treatment criteria were as follows: no treatment (NO), catheter placement (CAT), alpha-blockers, detrusor-attenuating medication, botulinum toxin (BTX), neuromodulation (NM), and physiotherapy/biofeedback (P/BF). IRR was assessed by kappa (κ). κ of diagnoses were NFs = 0.22; DO = 0.17; DU = 0.07; DSD = 0.14; and BOO = 0.18. For therapies, the highest κ was BTX = 0.71, NO = 0.38 and CAT = 0.44. There is a high influence of the individual rater. UD should be subject to the same analysis and a comparison should be made between UD and UF. This may have implications for the value of UF in the neuro-urological management of PwMS, although at present UD remains the gold standard for the diagnostics of NLUTD in PwMS.

Digital outcome measures are associated with brain atrophy in patients with multiple sclerosis

BackgroundDigital monitoring of people with multiple sclerosis (PwMS) using smartphone-based monitoring tools is a promising method to assess disease activity and progression.ObjectiveTo study cross-sectional and longitudinal associations between active and passive digital monitoring parameters and MRI volume measures in PwMS.MethodsIn this prospective study, 92 PwMS were included. Clinical tests [Expanded Disability Status Scale (EDSS), Timed 25 Foot Walk test (T25FW), 9-Hole Peg Test (NHPT), and Symbol Digit Modalities Test (SDMT)] and structural MRI scans were performed at baseline (M0) and 12-month follow-up (M12). Active monitoring included the smartphone-based Symbol Digit Modalities Test (sSDMT) and 2 Minute Walk Test (s2MWT), while passive monitoring was based on smartphone keystroke dynamics (KD). Linear regression analyses were used to determine cross-sectional and longitudinal relations between digital and clinical outcomes and brain volumes, with age, disease duration and sex as covariates.ResultsIn PwMS, both sSDMT and SDMT were associated with thalamic volumes and lesion volumes. KD were related to brain, ventricular, thalamic and lesion volumes. No relations were found between s2MWT and MRI volumes. NHPT scores were associated with lesion volumes only, while EDSS and T25FW were not related to MRI. No longitudinal associations were found for any of the outcome measures between M0 and M12.ConclusionOur results show clear cross-sectional correlations between digital biomarkers and brain volumes in PwMS, which were not all present for conventional clinical outcomes, supporting the potential added value of digital monitoring tools.

Polysomnography parameters in a large cohort of people with multiple sclerosis

BackgroundDisordered and disturbed sleep is quite common among people with multiple sclerosis (PwMS). It is associated with fatigue one of most disabling symptoms in MS. This study aims at comparing polysomnographic (PSG) sleep parameters in a large single cohort of PwMS from a single center to that of the published norms. Hence establishing PSG parameters in PwMS. MethodsThis is a retrospective review of 299 consecutive adult PwMS who were seen and evaluated with an overnight PSG at a Comprehensive MS Care Center between 11/19/2001 to 9/17/2014. Data extracted from the PSG included Total Sleep Time (TST), sleep efficiency (SE), sleep onset latency (SOL), Relative REM latency, total apnea-hypopnea indices (AHI), spontaneous arousal indices (AI), total periodic leg movements indices (PLMI) and, sleep architecture metrics including percentage spent in stages N1/N2, N3, and REM. ResultsPwMS, compared to normative data, had, on average, 85.9 min shorter TST (p < 0.001), 27.3 min longer SOL (p < 0.0001), 62.1 min longer REM latency (p < 0.0001), 10.7 % lower SE (p < 0.0001), 16.4 % more N1/N2 (p < 0.0001) and 11.4 % less N3 (p < 0.0001). REM latency The prevalence of Obstructive Sleep Apnea (OSA) was high at 60.7 % and the mean AHI was higher by 11.1 events per hour (p < 0.0001). ConclusionsThis study establishes PSG parameters in the largest PwMS cohort reported to date. It is important to be vigilant of sleep complaints in PwMS. Future prospective large single cohort studies with standardized methods are needed to further understand sleep disturbances in PwMS as well as their causes and implications.

Wearable sensor and smartphone assisted vestibular physical therapy for multiple sclerosis: usability and outcomes.

Vertigo, dizziness, gaze instability and disequilibrium are highly prevalent in people with MS (PwMS) and head movement induced dizziness is commonly reported. Vestibular physical therapy (VPT) is a specialised, non-invasive and effective therapy for these problems but usually involves travel for the person to a specialist center with both personal and carbon costs. The use of wearable sensors to track head movement and smartphone applications to deliver and track programs has potential to improve VPT in MS. This study investigated the usability and effects of a commercially available digital VPT system (wearable head sensor, smartphone app and clinician software) to deliver VPT to PwMS. A pre/post treatment design was employed and the primary outcome was the System Usability Scale (SUS). Other patient reported outcomes were the Service User Acceptability Questionnaire (SUTAQ), the Patient Enablement Instrument (PEI) and the Dizziness Handicap Inventory (DHI). Physical outcomes measurements included Mini-BESTest (MB), Modified Dynamic Gait Index (mDGI), Gait Speed (GS), Dynamic Visual Acuity (DVA) and head kinematics and symptoms during exercise. Sixteen PwMS (14 female), mean age 44(±14) years were recruited to the study and twelve completed VPT. Mean adherence to exercise, measured digitally was 60% (±18.4). SUS scores were high at 81 (±14) and SUTAQ scores also demonstrated high levels of satisfaction and acceptability of the system. Statistically significant improvements in MB (mean change 2.25; p = 0.004), mDGI (median change 1.00; p = 0.008), DVA (median change -1.00; p = 0.004) were found. Head frequencies significantly improved with concurrent decreased intensity of dizziness during head movements (mean change across 4 gaze stabilization exercises was 23 beats per minute; p < 0.05). Non-significant improvements were seen in DHI (p = 0.07) and GS (p = 0.15). 64.5% of follow up visits were conducted remotely (video or phone), facilitated by the system. This study had two main outcomes and benefits for PwMS. Firstly, we showed that the system used was both acceptable and could be used by PwMS. Secondly, we demonstrated an improvement in a range of dizziness, balance and gait metrics with remotely delivered care. This system has the potential to positively impact on MS physiotherapy service provision with the potential to deliver effective remote care.

Frontal-striatal glucose metabolism and fatigue in patients with multiple sclerosis, long COVID, and COVID-19 recovered controls.

This study compared brain glucose metabolism using FDG-PET in the caudate nucleus, putamen, globus pallidus, thalamus, and dorsolateral prefrontal cortex (DLPFC) among patients with Long COVID, patients with fatigue, people with multiple sclerosis (PwMS) patients with fatigue, and COVID recovered controls. PwMS exhibited greater hypometabolism compared to long COVID patients with fatigue and the COVID recovered control group in all studied brain areas except the globus pallidus (effect size range 0.7-1.5). The results showed no significant differences in glucose metabolism between patients with Long COVID and the COVID recovered control group in these regions. These findings suggest that long COVID fatigue may involve non-CNS systems, neurotransmitter imbalances, or psychological factors not captured by FDG-PET, while MS-related fatigue is associated with more severe frontal-striatal circuit dysfunction due to demyelination and neurodegeneration. Symmetrical standardized uptake values (SUVs) between hemispheres in all groups imply that fatigue in these conditions may be related to global or network-level alterations rather than hemisphere-specific changes. Future studies should employ fine-grained analysis methods, explore other brain regions, and control for confounding factors to better understand the pathophysiology of fatigue in MS and long COVID. Longitudinal studies tracking brain glucose metabolism in patients with Long COVID could provide insights into the evolution of metabolic patterns as the condition progresses.

Exploring the workplace factors and their influence on the employment outcomes for people with multiple sclerosis

BackgroundHigh unemployment rate of people with multiple sclerosis (PwMS) is associated with substantial economic costs. Whilst the impact of MS symptoms and other disease-related factors on employment outcomes of PwMS has been assessed, limited evidence exists on the impacts of workplace factors. ObjectiveTo investigate the most common individual and group workplace factors associated with unemployment or a perceived risk of unemployment in PwMS, and to identify patient subgroups that are more susceptible to changes in employment status due to such factors. MethodsData from the Australian MS Longitudinal Study (AMSLS) on employment status and workplace factors were used. Fifteen workplace factors were classified under four groups: organisational, commuting, moving around at work, and equipment usage factors. Participants answered ‘Yes’ to each factor if it related to their unemployment and/or perceived risk of becoming unemployed and a group factor was considered “Yes” if at least one individual factor within it was answered as “Yes”. The proportions of “Yes” responses were calculated for both individual and group factors. Total number of individual factors was calculated and descriptive analyses and ordered logistic regression were used to summarize the total number of factors affecting each participant, and their association with participants’ occupations, sex, disability severity and disease duration. ResultsCommon workplace factors influencing employment were organisational (39.8 % perceived risk, 44.0 % lost employment), commuting (28.9 % perceived risk) and equipment usage difficulty (30.9 % lost employment). Common individual factors included inflexible working conditions, lack of suitable work, commuting difficulties, architectural barriers, and requirement to stand for long periods to use equipment. Professionals, blue-collar workers, and those with moderate/severe disability were more likely to report a higher number of workplace factors risking their employment. ConclusionsWorkplace factors undermine PwMS employment, with variations among subgroups based on occupation and disability severity. Understanding these barriers is crucial for supporting PwMS in the workforce.

Attention-Deficit Hyperactivity Disorder Symptoms in Adults Diagnosed with Multiple Sclerosis: Prevalence and Correlates.

Background: The relationship between adult ADHD symptoms in People with Multiple Sclerosis (PwMS) is understudied. This study aimed to answer two questions: are PwMS more likely to experience higher ADHD symptoms versus healthy subjects? And what are the correlates of severe ADHD symptoms in PwMS? Methods: This study followed a cross-sectional design with predefined inclusion criteria. The Adult ADHD Self-Report Scale-V1.1 (ASRS) was used to assess the ADHD symptoms severity. Results: Data were analyzed from 171 PwMS and 200 controls. Regression analysis revealed that PwMS were at a significantly (B = 3.05, t = 2.24, 95% CI = 0.37-5.73, p = 0.02) higher risk to report higher ADHD scores versus controls. In addition, PwMS with relapses in the last 6 months and PwMS reporting smartphone addiction were at a significantly higher risk for severe ADHD (B = 7.19, t = 269, 95% CI = 1.91-12.48, p = 0.008) and (B = 9.18, t = 3.47, 95% CI = 3.97-14.41, p = 0.001), respectively. In conclusion, diagnosis with MS in our study was identified as a risk for higher ADHD symptoms. Conclusions: Further research is required to establish this relationship, and holistic medical and psychological interventions are required to improve the cognitive status of PwMS.

Protocol for the MS-CEBA study: an observational, prospective cohort study identifying Cognitive, Energetic, Behavioural and Affective (CEBA) profiles in Multiple Sclerosis to guide neuropsychological treatment choice

BackgroundNeuropsychological symptoms in the Cognitive, Energetic, Behavioural, and Affective (CEBA) domains are common in people with multiple sclerosis (PwMS) and can negatively affect societal participation. The current study aims to investigate whether there are combinations of symptoms in the different CEBA domains that consistently occur together, that is, if there are CEBA profiles that can be identified. If so, this study aims to develop a screening instrument identifying CEBA profiles in PwMS to select the most suitable neuropsychological rehabilitation treatment for a given CEBA profile and consequently improve the societal participation of PwMS.MethodsThis study is an observational, prospective cohort study consisting of 3 phases. Phase 1 focuses on the identification of CEBA profiles in a large sample of PwMS (n = 300). Phase 2 focuses on validating these CEBA profiles through replication of results in a new sample (n = 100) and on the development of the screening instrument. Phase 3 focuses on qualitatively evaluating in a small group of PwMS whether the selected treatment is suitable for the given CEBA profile or whether existing neuropsychological treatments should be adapted to meet the needs of PwMS suffering from symptoms in multiple CEBA domains simultaneously. Primary outcome is the CEBA profile, which will be derived from performance on neuropsychological assessment consisting of tests and questionnaires regarding the CEBA domains using a latent profile analysis. Inclusion criteria include MS diagnosis, sufficient ability in the Dutch language, and an age between 18 and 70 years.DiscussionThe results of the current study will contribute to a more comprehensive understanding of the entire spectrum of neuropsychological symptoms in PwMS. Identification of possible CEBA profiles, and accordingly, the development of a screening instrument determining the CEBA profile of PwMS in clinical practice, contributes to the timely referral of PwMS to the most suitable neuropsychological rehabilitation treatment. If necessary, adjustments to existing treatments will be suggested in order to sufficiently meet the needs of PwMS. All of this with the ultimate aim to improve societal participation, and thereby quality of life, of PwMS.Trial registrationDutch Central Committee on Research Involving Human Subjects (CCMO) NL83954.042.23; ClinicalTrials.gov NCT06016309.