Development and psychometric properties of the caregiver sense of competence questionnaire for caregivers of people with multiple sclerosis (CareSoC-MS): a cross-sectional study

Pandemic forward: Lessons learned and expert perspectives on multiple sclerosis care in the COVID-19 era

IntroductionThe mechanisms of action of disease-modifying therapies (DMTs) for multiple sclerosis (MS) are complex and involve an interplay of immune system components. People with MS (PwMS) may lack a clear understanding of the immunological pathways involved in MS and its treatment; effective communication between healthcare professionals (HCPs) and PwMS is needed to facilitate shared decision-making when discussing the disease and selecting DMTs and is particularly important in the coronavirus disease 2019 (COVID-19) era.MethodsIn this patient-authored two-part review, we performed a targeted literature search to assess the need for better communication between HCPs and PwMS regarding treatment selection, and also conducted a qualitative survey of four patient and care-partner authors to obtain insights regarding their understanding of and preferences for the treatment and management of MS.ResultsFollowing a search of the Embase and MEDLINE databases using Ovid in June 2020, an analysis of 40 journal articles and conference abstracts relating to patient empowerment and decision-making in DMT selection for MS showed a preference for safety and efficacy of treatments, followed by autonomy and convenience of administration. A need for better communication between HCPs and PwMS during treatment selection to improve patient satisfaction was also identified. The open survey responses from the patient authors revealed a need for greater involvement in decision-making processes and desire for improved communication and information tools.ConclusionsThis targeted literature search and phenomenological review confirms PwMS preferences for empowered decision-making in disease management and treatment selection, to optimize independence, safety, and efficacy. It also identifies an unmet need for improved communication and information tools that convey MS information in a relatable manner. Furthermore, this review seeks to address this unmet need by providing plain language figures and descriptions of MS immune mechanisms that can be used to facilitate discussions between HCPs and PwMS.Supplementary InformationThe online version contains supplementary material available at 10.1007/s40120-022-00349-5.

Utilizing the ISway to Identify and Compare Balance Domain Deficits in People with Multiple Sclerosis

Self-management in Multiple Sclerosis (MS): Comparing Perceptions of Need Between People with MS, Carepartners, and MS Providers

BackgroundSelf-efficacy concerns individuals’ beliefs in their capability to exercise control in specific situations and complete tasks successfully. In people with multiple sclerosis (PwMS), self-efficacy has been associated with physical activity levels and quality of life. As a validated German language self-efficacy scale for PwMS is missing the aims of this study were to translate the Unidimensional Self-Efficacy Scale for Multiple Sclerosis (USE-MS) into German, establish face and content validity and cultural adaptation of the German version for PwMS in Austria. A further aim was to validate the German USE-MS (USE-MS-G) in PwMS.MethodsPermission to translate and validate the USE-MS was received from the scale developers. Following guidelines for translation and validation of questionnaires and applying Bandura’s concept of self-efficacy, the USE-MS was forward-backward translated with content and face validity established. Cultural adaptation for Austria was performed using cognitive patient interviews. Reliability was assessed using Cronbach’s alpha, Person separation index and Lin’s concordance correlation coefficient. Rasch analysis was employed to assess construct validity. Comparison was made to scales for resilience, general self-efficacy, anxiety and depression, multiple sclerosis fatigue and health-related quality of life. Data were also pooled with an historic English dataset to compare the English and German language versions.ResultsThe translation and cultural adaptation were successfully performed in the adaptation process of the USE-MS-G. Pretesting was conducted in 30 PwMS, the validation of the final USE-MS-G involved 309 PwMS with minimal to severe disability. The USE-MS-G was found to be valid against the Rasch model when fitting scale data using a bifactor solution of two super-items. It was shown to be unidimensional, free from differential item functioning and well targeted to the study population. Excellent convergent and known-groups validity, internal consistency, person separation reliability and test-retest reliability were shown for the USE-MS-G. Pooling of the English and German datasets confirmed invariance of item difficulties between languages.ConclusionThe USE-MS-G is a robust, valid and reliable scale to assess self-efficacy in PwMS and can generate interval level data on an equivalent metric to the UK version.Trial registrationISRCTN Registry; ISRCTN14843579; prospectively registered on 02. 01. 2019.

Purpose The aim of the present study was to adapt and validate the Speech Pathology-Specific Questionnaire for Persons with Multiple Sclerosis (SMS) into the Greek language. Method The study sample consisted of 124 people with multiple sclerosis (PwMS) and 50 healthy controls (HCs). All PwMS underwent cognitive assessment using the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS). Both PwMS and HCs completed the SMS, the Eating Assessment tool (EAT-10), the Voice Handicap Index (VHI), and the Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39). Result Significant difference was found between PwMS and HCs for the EAT-10, SAQOL-39, the total SMS, and the SMS subscales. Discriminant validity analyses revealed a statistically significant difference between PwMS and HCs for the total and subscales SMS. Convergent validity analyses between the total SMS and the SMS subscales, and scores on the BICAMS, EAT-10, SAQOL-39, and VHI in PwMS were significantly correlated, with exception of the SMS Speech/Voice with the Symbol Digit Modalities Test (SDMT) and the Greek Verbal Learning Test-II (GVLT-II). Scores on the EAT-10, SAQOL-39, and VHI in PwMS were also correlated with the total SMS and the SMS subscales in PwMS, HCs, and the total sample. Construct validity analyses revealed that the total SMS and the SMS subscales were significantly correlated with the Expanded Disability Status Scale (EDSS) and years of education, while no associations were found with regards to age, MS subtype (relapsing-remitting MS [RRMS] vs progressive MS [PMS]), disease duration, or sex. The internal consistency of all items was excellent in PwMS and the total sample (Cronbach’s alpha was >0.7 after deletion of one item), with the exception of two items, which still fell within the acceptable range (>0.6) for PwMS and the total sample. Conclusion The Greek version of the SMS is a reliable and valid patient-reported outcome measure to assess speech-language and swallowing pathology related symptoms in PwMS, and can be used for research and clinical purposes.

The Effectiveness of Reactive Step Training in People with Multiple Sclerosis

BackgroundIn both the general population and people with multiple sclerosis (PwMS), physical exercise is associated with improved mental well-being. Moreover, there is evidence of the possible protection of physical activity against disease progression in multiple sclerosis (MS). However, the question arises if acute or regular exercise has any impact on the immune system in PwMS. To answer this question, we performed a systematic review and meta-analysis on both plasma and serum cytokine levels (IL-6 and TNF-α) before and after acute and regular exercise among PwMS and compared to healthy controls.MethodWe performed an online search via PubMed, EMBASE, SCOPUS, Web of Science, and Cochrane Library till September 2021 to identify original studies on IL-6 and TNF-α changes after acute and regular exercise in PwMS and controls. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA), 11 original studies were included in the meta-analysis. Sensitivity analyses were used to identify the origins of heterogeneity. R 4.0.4 was used to perform the meta-analysis of IL-6 and TNF-α levels before and after acute and regular exercise in PwMS, compared to controls. This study does not qualify for a clinical trial number.ResultsIL-6 levels did neither increase nor decrease after acute and regular exercise in PwMS, and compared to controls (pre- vs. post-intervention: Standardized Mean Difference (SMD) -0.09, 95% CI [−0.29; 0.11], p-value = 0.37, PwMS vs. Control: SMD −0.08, 95% CI [−0.33; 0.16], p-value = 0.47). In PwMS, TNF-α levels decreased after regular exercise and when TNF-α levels of both acute and regular exercise were pooled (pre- vs. post-intervention: SMD −0.51, 95% CI [-0.91; 0.11], p-value = 0.01, PwMS vs. Control: SMD −0.23, 95% CI [−0.66; 0.18], p-value = 0.26). TNF-α levels did neither increase nor decrease after acute and regular exercise in PwMS, when compared to controls.ConclusionThis systematic review and meta-analysis show that exercise does not lead to significant changes in peripheral levels of IL-6 in PwMS in contrast to the observed response in healthy subjects and other medical contexts. However, regular exercise had a specific anti-inflammatory effect on blood TNF-α levels in PwMS. It remains to be investigated why PwMS display this different exercise-induced pattern of cytokines.

Preliminary race-ethnicity-based analyses of fall risk among people with multiple sclerosis.

Date Presented 04/06/19 People with Multiple Sclerosis (PwMS) often experience executive function (EF) deficits affecting daily living. The Weekly Calendar Planning Activity (WCPA) is a recently developed tool requiring management of a cognitively challenging functional task. This study sought to validate the WCPA as an assessment of functional cognition for PwMS. We established the WCPA’s discriminant, concurrent, and construct validity. Overall, it can be a useful tool to assess EF function difficulties among PwMS. Primary Author and Speaker: Diane Rose Allid Additional Authors and Speakers: Melissa Orenstein Contributing Authors: Yael Goverover

Objective:Multiple sclerosis (MS) is associated with cognitive and social cognitive deficits. Social cognition impairments may include difficulty with facial expression and emotion recognition. People with MS (PwMS) may also not be aware of their cognitive challenges as demonstrated through discrepant objective and subjective assessments. Research recently conducted in demyelinated mouse models demonstrated that metformin, a drug typically used to treat type II diabetes mellitus (DMII), promotes remyelination and reverses existent social cognition impairment by repressing the monoacylglycerol lipase (MgII) enzyme in the brain. We aim to translate this basic science research and are conducting a pilot study to determine if metformin improves social cognition in PwMS. This project will compare social cognition in those with MS and comorbid DMII who are treated with metformin and those who are not. For the purposes of this interim data analysis, we collapse across both MS groups who are, and who are not, treated with metformin. The current objective is to evaluate the relationship between subjective (i.e., perceived empathy), objective social cognition and information processing speed (IPS) in PwMS and co-morbid diabetes.Participants and Methods:Preliminary data on 15 PwMS are included. Participants completed a demographic questionnaire, a cognitive assessment battery, an objective social cognition assessment and self-report questionnaires. These questionnaires assessed subjective social cognition, fatigue, mood, and disability level.Results:Preliminary results showed that IPS was positively correlated with the affective empathy domain of social cognition, r = .53, p = .04. Additionally, IPS was positively correlated with objective social cognition, r = .71, p = 003. Follow-up regression analyses demonstrated that IPS predicted objective social cognition, R2 = .71, SE = 3.04, F(1,13) = 13.36, p = .003 and subjective social cognition, R2 = .53, SE = 5.39, F(1,13) = 4.97, p = .04. However, subjective and objective measures of social cognition were not correlated, p > .05 and remained uncorrelated when IPS was controlled for, p > .05.Conclusions:A majority of the variance in social perception is explained by IPS, suggesting that how quickly one can think may be a fundamental cognitive process to allow optimal functioning in social situations. While the reason for the relationship between IPS and subjective social cognition is perhaps less apparent, it may reflect a more global cognitive compromise that impacts both cognitive and social processes. This lends support to the Relative Consequence Model that suggests IPS deficits are a fundamental cognitive deficit underlying other more complex cognitive processes. The lack of correlation between subjective perception of empathy and objective social cognition requires further exploration and could potentially be related to some individuals with MS having a diminished ability to judge their own social proficiency. Further analyses with a larger sample will be conducted to assess group differences in social cognitive outcomes and MgII levels between metformin and non-metformin groups. If PwMS who take metformin have better social cognition compared to PwMS who do not take metformin, Mgll levels can be used as a biomarker to guide metformin treatment with the goal of improving social cognition.

Multiple sclerosis (MS) is a complex condition with numerous physical, cognitive and emotional symptoms. These may necessitate significant, permanent lifestyle changes for people with multiple sclerosis (PwMS) and their caregivers and families, meaning it is important in contemporary neurological practice to consider including families and/or caregivers in the management of MS. However, existing evidence suggests that family involvement is not always beneficial; for example, it can exert either a strong positive or negative influence on the ability of PwMS to achieve optimal outcomes from their treatment and disease management. This paper, based on a live debate between neurologists and PwMS, examines the current perceptions on constructive involvement of families and caregivers in consultations for and management of MS, and reveals several areas where additional studies are warranted. Shared decision-making in MS has historically been a collaboration solely between healthcare professionals (HCPs) and PwMS, but PwMS are now more frequently being accompanied to appointments by a support person. This paper encourages HCPs to understand the dynamics between PwMS and their support person, and to individualize consultations and information accordingly. Family and caregiver involvement in the provision of care for PwMS needs to be for the benefit of, and at the discretion of, the PwMS. Support for families of PwMS, although important, may be more effectively and appropriately delivered through other channels outside of the clinical setting. Educating HCPs on the current patient experience to enable them to provide improved personalized care will ensure a mutualistic, patient-centred relationship with PwMS, which will help to optimize outcomes. Communication tools may also facilitate these interactions.

The ability to accurately complete goal-directed actions, such as reaching for a glass of water, requires coordination between sensory, cognitive and motor systems. When these systems are impaired, like in people with multiple sclerosis (PwMS), deficits in movement arise. To date, the characterization of upper limb performance in PwMS has typically been limited to results attained from self-reported questionnaires or clinical tools. Our aim was to characterize visually guided reaching performance in PwMS. Thirty-six participants (12 PwMS who reported upper limb impairment (MS-R), 12 PwMS who reported not experiencing upper limb impairment (MS-NR), and 12 age- and sex-matched control participants without MS (CTL)) reached to 8 targets in a virtual environment while seeing a visual representation of their hand in the form of a cursor on the screen. Reaches were completed with both the dominant and non-dominant hands. All participants were able to complete the visually guided reaching task, such that their hand landed on the target. However, PwMS showed noticeably more atypical reaching profiles when compared to control participants. In accordance with these observations, analyses of reaching performance revealed that the MS-R group was more variable with respect to the time it took to initiate and complete their movements compared to the CTL group. While performance of the MS-NR group did not differ significantly from either the CTL or MS-R groups, individuals in the MS-NR group were less consistent in their performance compared to the CTL group. Together these findings suggest that PwMS with and without self-reported upper limb impairment have deficits in the planning and/or control of their movements. We further argue that deficits observed during movement in PwMS who report upper limb impairment may arise due to participants compensating for impaired movement planning processes.

Previous literature has been diverging on cancer risk in people with multiple sclerosis (PwMS). Therefore, this study compared the risk of cancer in PwMS and a matched sample from the French general population. This 10-year nationwide retrospective matched cohort study (2012-2021) used data from the national French administrative health care database (99% coverage of the French population) to determine the time to the first incident cancer. PwMS were identified using their long-term disease (LTD) status, hospitalizations, and multiple sclerosis (MS)-specific drug reimbursements. The control population was matched 4:1 on age, sex, residence, insurance scheme, and cohort entry date. Participants were included if they had no history of cancer in the 3 years before inclusion. Patients with cancer were identified through LTD status, hospitalizations, chemotherapy, radiotherapy, or prostate cancer-specific drug reimbursements. Overall and cancer location-specific hazard ratios (HRs) for the first incident cancer were obtained from Fine and Gray models, and age- and sex-stratified estimates were reported. Participation in cancer screening through the 3 national programs (breast, colorectal, and cervical) were compared between groups. Cancer incidence was 799 per 100,000 person-years (PYs) (n = 8,368) among the 140,649 PwMS and 736 per 100,000 PYs (n = 31,796) among the 562,596 matched controls (70.8% of women; follow-up: 7.6 ± 3.2 years). A small overall risk increase was observed for PwMS (HR 1.06, 95% CI 1.03-1.08), mostly in women (HR 1.08, 95% CI 1.05-1.11). Risk varied by cancer types and was lower for prostate (HR 0.80, 95% CI 0.73-0.88), breast (HR 0.91, 95% CI 0.86-0.95), and colorectal (HR 0.90, 95% CI 0.84-0.97) cancer and higher for bladder (HR 1.71, 95% CI 1.54-1.89), brain (HR 1.68, 95% CI 1.42-1.98), and cervical (HR 1.24, 95% CI 1.12-1.38) cancer in PwMS. Cancer risk was higher in PwMS younger than 55 years (HR 1.20, 95% CI 1.15-1.24) but decreased in PwMS aged 65 years and older (HR 0.89, 95% CI 0.85-0.94). This trend was found in all cancer locations. There were fewer PwMS getting screened than controls (all programs), with a particularly pronounced difference among those aged 65 years and older. Cancer risk was slightly increased in PwMS, particularly for urogenital cancers, possibly due to surveillance bias. Risk fluctuated depending on age, perhaps due to varying generational screening practices (i.e., diagnosis neglect in the older PwMS) and risk factors.

Spatio-Temporal Gait Parameters to Distinguish Multiple Sclerosis Disability during Dual- Task Walk