International journal of MS care最新文献

Background: For individuals with multiple sclerosis (MS), treatment interruption can result in relapse/recurrence of the disease activity. Currently, there are no consensus guidelines about whether an abrupt stop with a short washout period or gradual tapering is better for fingolimod (Gilenya) cessation. We investigated the impact of the fingolimod discontinuation strategy on the recurrence of disease activity and the rebound occurrence of symptoms during washout.

Methods: This was a retrospective, observational, multicenter study of individuals with MS in Egypt and Kuwait. The charts of patients on fingolimod therapy were screened to collect data on the impact of drug cessation strategies on disease activity and relapse occurrence. Disease relapse after cessation was defined as a relapse that occurred in the previous 12 months despite using a first-line treatment option or 2 relapses in the previous 12 months.

Results: In a cohort of 100 patients, 58 had an abrupt cessation and 42 had a gradual tapering. Compared with abrupt cessation, gradual tapering was associated with a significantly lower rate of disease relapse (4.8% vs 81%, respectively; P = .001). Abrupt cessation also resulted in increased MRI findings of new lesions (24.1%; P = .29), enhancing lesions (32.8%; P = .5), and enlarging lesions (6.9%; P = .59); however, none of the MRI findings were significant. Other risk factors showed no significant association with disease relapse after fingolimod cessation.

Conclusions: Gradual fingolimod tapering is highly recommended to decrease the risk of rebound and severe disease reactivation. A prolonged washout should be avoided for lymphocyte recovery.

Background: Multiple sclerosis (MS) disease factors, such as cognitive impairment, can cause disruptions in meaningful activities, also known as illness intrusiveness. Although the association between specific objective measures of cognition and illness intrusiveness has been documented in MS, the contributions of individuals' perceptions of their cognition or whether any psychological factors can buffer the relationship have yet to be explored. This study aimed to (1) simultaneously examine objective processing speed and subjective cognition as disease factors contributing to illness intrusiveness and (2) explore whether resilience moderates the relationship between cognition and illness intrusiveness.

Methods: Participants (N = 112) were individuals with MS who completed the Illness Intrusiveness Ratings Scale (IIRS), Symbol Digit Modalities Test (SDMT), Perceived Deficits Questionnaire (PDQ), and MS Resiliency Scale (MSRS) as part of a larger cross-sectional study. A hierarchical linear regression was done, followed by individual moderation analyses.

Results: Both the PDQ (b = .43, P = .001) and SDMT (b = -4.17, P = .003) were independent predictors of the IIRS. There was no evidence of moderation in either model, although the MSRS independently contributed to the IIRS.

Conclusions: Among individuals with MS, objective processing speed and subjective cognition were independently associated with illness intrusiveness, highlighting the importance of considering both cognitive performance and perceptions as contributing factors to life disruptions.

Background: Studies addressing frailty in the context of multiple sclerosis (MS) are emergent. This study explores cognitive function in older adults with MS as a function of frailty status.

Methods: This cross-sectional study used baseline data from a feasibility randomized controlled trial of a home-based exercise program for older adults with MS. Frailty was verified using performance scores from the Short Physical Performance Battery (SPPB) and cut points available in the literature. Cognitive function was assessed using the Brief International Cognitive Assessments for Multiple Sclerosis (BICAMS). Data were analyzed using inferential statistics adopting a significance of P < .05.

Results: Data from 26 older adults with MS (≥60 years) were analyzed. The majority of the participants were women, and over 85% of the sample had the relapsing-remitting form of MS. Participants reported a mean of more than 20 years of disease and a moderate level of disability (Expanded Disability Status Scale score = 4). Nearly 58% of the sample was classified as frail based on SPPB scores. Univariate analysis demonstrated that frail older adults performed significantly worse (P < .05) on all 3 BICAMS tests. However, after controlling for age and disability level, only visuospatial memory remained significant between frailty groups (P = .043).

Conclusions: Our findings suggest reduced cognitive function in frail older adults with MS compared with their nonfrail counterparts. This highlights the need to develop interventions to improve cognitive function and to reverse frailty for older adults with MS.

Background: The complexity of falls in people with multiple sclerosis (MS) needs further exploration to develop strategies to reduce fall risk. The aim of this study is to explore and describe factors contributing to falls and the complexity of fall situations in people with MS.

Methods: This longitudinal study used individual interviews shortly after prospective reporting of falls. Manifest analysis was used to describe frequency, place, and time of falls. The International Classification of Functioning, Disability and Health (ICF) was used for deductive content analyses to describe fall-inducing factors. Participants were adults with MS (N = 33) who had experienced falls during the past year and who did not use walking aids.

Results: The 25 participants who fell during the study period reported 94 falls, mainly during the day (61%) and outdoors (56%). Fall situations were complex, with interaction between triggering and circumstantial factors related to all domains in the ICF, the impact of preceding factors, and fluctuating symptoms.

Conclusions: The complexity of fall situations can be more clearly understood and managed by considering the preceding activities and circumstances in addition to describing single risk factors. This may facilitate discussions of fall risk between health care professionals and people with MS. Individualized fall risk assessments and interventions that strengthen self-management are recommended.

Background: Health care utilization is higher in individuals with multiple sclerosis (MS) than in the general population. However, there are limited data on the reasons for their hospital admissions. Our primary objective is to analyze the reasons for the hospitalization of individuals with MS with the goal of identifying preventable causes.

Methods: We conducted a retrospective analysis of a cohort of adults with a confirmed diagnosis of MS admitted to Duke University Hospital between January 2018 and January 2020. This yielded a cohort of 210 individuals. Data were analyzed using descriptive statistics.

Results: The most common reason for admission was urinary tract infection (UTI; 10.3%). The average length of stay was 6.1 days for the individuals with MS vs 5.5 days for the general population. The 30-day readmission rates were 14.9% and 15.5%, respectively. A significant number of admitted patients were not on any disease-modifying therapy (DMT), and no difference in median age was identified between those with a DMT vs those without.

Conclusions: Length of stay and readmission rates were similar to those of the general population in this contemporary cohort. Given the prevalence of bladder dysfunction in MS, it is not surprising that a UTI was the most common reason for admission. Actively addressing management of and techniques for bladder dysfunction may decrease the admission rate for individuals with MS. Though we now have more treatment options for MS, many individuals with the highest health care utilization are not on a DMT. Future research is needed to identify the factors that can be addressed to support these patients and reduce preventable hospitalizations.

Background: Bladder dysfunction (BD) is common in people with multiple sclerosis (MS) and can reduce participation in daily life. Detecting BD early allows for effective prevention-focused treatments such as pelvic floor physical therapy. Pairing neurotechnology with patient-reported outcomes to remotely measure BD could significantly improve monitoring and treatment of BD. Therefore, we describe the process and findings of stakeholder engagement from a human-centered design process to assemble a wearables for the bladder (WeB) kit.

Methods: Four people with MS with varying BD severity, and 5 MS clinical/research experts had 4 virtual meetings. Commercially available bladder tools were graded for ability to evaluate, monitor, or treat BD. The Health Information Technology Usability Evaluation Scale (utility, usability, feasibility) was used for evaluation. Scoring was performed individually and as a group.

Results: Of the 11 devices, 5 obtained mean scores of greater than 6 of 10 for likability, usability, and device utility. The 2 highest scoring (9/10) devices were selected for the pilot. One device measures bladder urine levels, reporting the number/frequency of voids/leaks; the other guides pelvic floor exercises by pairing games on an app with biofeedback from intravaginal sensors. We uncovered critical differences in experts' and patients' appreciation of the tools, and the collaborative engagement led to substantial revisions of initial tool scores.

Conclusions: This process underscores the critical role of stakeholder engagement in the selection of digital tools, especially in sensitive domains like pelvic function. Ongoing clinical validation of the selected tools will yield a validated, user-friendly WeB kit that is able to fill gaps in our ability to evaluate BD treatments in people with MS, ultimately reducing the impact of BD on quality of life.

Background: Fatigue is a common and debilitating symptom of multiple sclerosis (MS). Prior work suggests that the prevalence of fatigue is higher in progressive MS (PMS) than relapsing MS (RRMS). No patient-reported outcomes of fatigue have been validated specifically for individuals with PMS, despite evidence that they characterize fatigue differently than individuals with RRMS. Therefore, the objective of this study was to characterize fatigue in both the RRMS and PMS subtypes and determine the convergent validity of the Fatigue Symptoms and Impacts Questionnaire (FSIQ) for individuals with PMS.

Methods: A nationwide survey yielded 806 (637 RRMS, 169 PMS) complete responses. The survey collected demographic information and self-reported disease severity, as well as measures of fatigue, health-related quality of life, and self-reported functioning.

Results: People with PMS reported significantly more severe fatigue than those with RRMS (P < .001). The FSIQ subdomains of physical, cognitive/emotional, and coping demonstrated moderate (r = 0.5-0.75) to excellent (r > 0.75) validity (P < .001) with other measures of fatigue.

Conclusions: More severe fatigue in people with PMS as compared to those with RRMS underscores the importance of using validated tools to capture fatigue in persons with PMS. The FSIQ is a valid and freely available tool to capture the physical, mental, and emotional fatigue of individuals with PMS.

Background: Patient-generated data are a cornerstone of individualized multiple sclerosis (MS) treatment. MyMS, an interface for patient-reported outcomes (PROs) was developed by the Finnish MS Register to enable systematic collection of PROs.

Methods: MyMS collects data on demographics, lifestyle factors, disease-related factors, and validated questionnaires, including the Quality of Life Questionnaire (15D), the Multiple Sclerosis Impact Scale (MSIS-29), and the Fatigue Severity Scale (FSS). At the end of 2020, the patient-reported Expanded Disability Status Scale (PREDSS), the EuroQOL-5 Dimension (EQ-5D), the Fatigue Scale for Motor and Cognitive Functions (FSMC), and the Multiple Sclerosis Neuropsychological Questionnaire (MSNQ) were added.

Results: As of January 1, 2023, 1201 individuals with MS (79% female) have added data to MyMS. Of the validated PRO measures (PROMs), the 15D, MSIS-29, and FSS are the most used. The mean PREDSS score is 3.0 and median disease duration is 6.4 years. According to the existing PROMs, patients report mildly compromised quality of life and problems with fatigue and cognition.

Conclusions: The patient interface of the Finnish MS Register consists of data from 17 of 21 counties with well-being services. The interface is used by 10% of Finnish individuals with MS. The addition of the PREDSS, EQ-5D, FSMC, and MSNQ to the interface has increased health care professional and patient interest in the use of PROMs. We suggest that PROs should be integrated into electronic health records to improve shared decision-making and diminish documentation burden.

Background: Inpatient rehabilitation improves health-related quality of life (HRQOL) for people with multiple sclerosis (MS). However, the obtained improvements decline once people return home. The challenge is to find ways to preserve the beneficial effects for the long term. We investigated whether monthly telecoaching after discharge would enhance the long-term carryover of improvements.

Methods: We conducted a 1-year exploratory study with 2 delivery methods: telephone coaching and web-based coaching. After discharge, the telephone group received monthly calls; the web-based group responded to monthly online coaching questions. Based on their rehabilitation goals, we put patients into a neuropsychological group or a physical group. In addition, we matched each patient with similar wait-list control patients and treatment patients from the main study. The primary outcome was HRQOL measured by the Functional Assessment in Multiple Sclerosis (FAMS).

Results: The neuropsychological group had long-term preservation of HRQOL with both delivery methods, with telephone coaching seeming to be superior. Mean differences in FAMS at the 12-month median follow-up for the neuropsychological group compared with the control wait-list control group were for the telephone group: + 15.4 (95% CI, 3.5-27.4; P = .011); for the web-based group: + 10.9 (95% CI, -3.3 to 25.2; P = .130); for the control treatment group: + 6.9 (95% CI, 0.6-13.3; P = .031). The physical group saw no beneficial effects from telecoaching.

Conclusions: Following inpatient multidisciplinary rehabilitation, monthly telecoaching of individuals with MS with neuropsychological challenges enhanced the long-term carryover of HRQOL, with one-on-one telephone coaching showing more pronounced improvements than web-based automated coaching.

Background: The perception that one is at increased risk of interpersonal victimization or violence can deleteriously affect community participation and quality of life. Race, sex, and disability status, often associated with use of an assistive mobility device (AD), are known correlates of perceived risk of victimization; however, almost no research has explored how these variables intersect for individuals with multiple sclerosis (MS), and none have sought to identify potential risk and protective factors.

Methods: Data for the present study come from a single time point derived from a 10-year longitudinal survey of 446 individuals with MS. Lifetime trauma exposure, personal resilience and self-efficacy, control over participation, and perceived risk of interpersonal victimization due to disability were all assessed via self-report. Statistical analyses included analysis of covariance with participants stratified by race/ethnicity, sex, and AD use.

Results: After controlling for lifetime trauma exposure and severity of physical impairment, the use of an AD was significantly associated with greater perceived risk of victimization due to disability. Further, people with MS from racial and ethnic minority groups who used ADs had the highest perceived risk relative to all other groups. Higher levels of perceived risk were associated with a lower sense of control over community participation, lower resilience, and lower disease management self-efficacy.

Conclusions: Visible indicators of disability may contribute to perceptions of vulnerability, especially among people with MS who are racially and ethnically marginalized. Clinicians should be aware of how perceived vulnerability may impact a sense of control over community participation, particularly when educating patients on AD use.