International journal of MS care最新文献

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.

Background: This study aims to evaluate the feasibility of an occupation-based intervention (OBI) on dexterity and occupational performance for people with multiple sclerosis (MS) and to gather preliminary efficacy data.

Methods: In this feasibility study, 2 women with MS participated in 12 OBI sessions that focused on increasing upper extremity function. The Canadian Occupational Performance Measure, 9-Hole Peg Test, Expanded Disability Status Scale, Montreal Cognitive Assessment, and Fatigue Severity Scale (FSS) were used as outcome measures. The scores of these assessments are reported descriptively.

Results: According to preliminary data, both participants demonstrated improvements in dexterity, occupational performance, and occupational performance satisfaction. These data suggest that OBI may be implemented effectively in Iran.

Conclusions: OBI improved the functional use of the participants' upper extremities as well as their occupational performance and satisfaction with their occupational performance in each of the 2 women with MS. This preliminary intervention program should be further tested using randomized controlled trials.

Background: Multiple sclerosis (MS) is a neurological condition leading to significant disability and challenges to quality of life. To slow progression and reduce relapses, it is critical to rapidly initiate disease-modifying therapy (DMT) after diagnosis. Patient demographics may play a role in timely DMT initiation. Financial barriers may also result in delays in DMT access.

Methods: This retrospective, single-center, cross-sectional study included patients seen at a neurology clinic at a large academic medical center for an initial evaluation of MS between January 1, 2022, and June 30, 2022. As an indicator of the quality of care, the primary study outcome was whether patients were offered DMT initiation on their first clinic visit. Secondary outcomes evaluated the time to DMT initiation, including differences in care based on demographic factors and financial coverage.

Results: Of the 49 eligible individuals studied, 45 (91.8%) were offered DMT at their initial MS visit. Descriptive statistics appeared to demonstrate that demographic factors did not impact whether DMT was offered. However, the majority of patients experienced access barriers relating to prior authorization requirements (80.0%) and/or the need for co-pay assistance (52.0%).

Conclusions: DMT was appropriately offered to a majority of patients at their initial MS visit, regardless of demographic considerations. No offer of DMT and delays in initiation were primarily due to the need for imaging and specialty referrals, as well as financial barriers. Medication assistance teams may play a crucial role in limiting delays and financial hurdles associated with insurance coverage and co-pay assistance.

Background: The John A. Schafer, MD Multiple Sclerosis Achievement Center (MSAC) conducts wellness programs that include exercise, cognitive stimulation, education, emotional support, and socialization for people with multiple sclerosis and their care partners. Patient-reported outcomes (PROs) are collected annually. Four-year outcomes encompass the COVID-19 pandemic when some of these programs were offered virtually.

Methods: Beginning in 2017, baseline data were collected for 110 MSAC day wellness program participants through PRO measures. Of those 110, 52 completed PROs annually through 2021. Outcome measures included the Multiple Sclerosis Impact Scale (MSIS-29); Multiple Sclerosis Self-Efficacy Scale (MSSE-10); Godin Leisure-Time Exercise Questionnaire (GLTEQ); and the Neurology Quality of Life domains of Anxiety, Depression, Emotional and Behavioral Dysregulation, Positive Affect, Cognition, Ability to Participate in and Satisfaction with Social Roles and Activities, and Satisfaction with Social Roles and Activities. Analysis using t tests compared baseline with 4-year data. A separate analysis compared outcomes collected in January 2020 and January 2021.

Results: Analysis of 4-year data demonstrated statistically significant improvement in MSIS-29 and GLTEQ. Statistically significant improvements noted at years 2 and 3 in the Ability to Participate in Social Roles and Activities were no longer significant at year 4. Other notable changes included significant decreases in MSSE at year 4 when compared with baseline and year 3.

Conclusions: Individuals who participated in a weekly, structured day wellness program showed improvements in self-reported disease impact and physical activity at year 4 vs baseline. Decreases in self-efficacy and social domains were seen, corresponding with disruptions caused by the COVID-19 pandemic. Further analysis is needed to understand the effects of the pandemic on program participants.

Background: The study of the effectiveness of multidisciplinary rehabilitation (MDR) and how the symptoms and needs of individuals with multiple sclerosis (MS) interplay with the diversity of MDR interventions is still a conundrum, often referred to as a black box.

Methods: We conducted a partial crossover randomized controlled trial with follow-ups at 1 (discharge), 6, and 12 months. Based on their rehabilitation goals, each patient was categorized into 1 of 5 main focus areas (MFAs) prior to admission: Resilience, Cognitive Function, Energy, Physical Function, and Personal Needs. The Functional Assessment of Multiple Sclerosis (FAMS) instrument scores were the primary outcome.

Results: MFA groups varied in age (P = .036), MS type (P = .002), Expanded Disability Status Scale score (P < .001), time since diagnosis (P = .002), and FAMS at baseline (P < .001), as well as in composition and quantity of MDR services. At discharge, significant FAMS improvements were found in all 5 MFA groups (FAMS change > 10.4, P < .05), but the affected subdimensions and persistence of improvements varied among MFA groups. At the 6-month follow-up, estimates of controlled differences in FAMS were 9.9 (P =.001), 5.6 (P = .196), 8.5 (P = .008), -1.4 (P = .548), and 17.9 (P = .012) for the Resilience, Cognitive Function, Energy, Physical Function, and Personal Needs groups, respectively.

Conclusions: This study demonstrated that inpatient MDR improves functioning and health-related quality of life in people with MS; the type, degree, and persistence of the benefits are associated with a patient's main focus area of rehabilitation, which signifies the importance of the goal-setting process in MDR.

Background: Foot drop in people with multiple sclerosis (MS) commonly leads to decreased mobility and quality of life (QOL). Functional electrical stimulation (FES) of the peroneal nerve can improve the gait of people with foot drop, yet various barriers restrict widespread use. The purpose of this case series was to examine the feasibility of a telerehabilitation-monitored FES device and report changes in functional mobility and QOL in people with moderate MS-related disability.

Methods: FES use was progressed over 8 weeks via 3 telerehabilitation sessions. Feasibility of telerehabilitation was assessed by percentage of telerehabilitation visits completed and participant-reported satisfaction. At baseline and study completion, functional mobility with and without FES were assessed by the Timed 25-Foot Walk (T25FW), Timed Up and Go (TUG), and 2-Minute Walk Test (2MWT), Multiple Sclerosis Impact Scale (MSIS-29), and the 12-item Multiple Sclerosis Walking Scale (MSWS-12). Fatigue was assessed via the Modified Fatigue Impact Scale (MFIS) before and after the intervention.

Results: Eleven participants (mean age = 50.4 years [SD 10.8]; 2 males) completed the study. All (33/33) telerehabilitation visits were completed and participants attained high levels of satisfaction with no adverse events. At 8 weeks, compared to baseline, there were clinically meaningful improvements on the T25FW, 2MWT, and TUG for 45%, 55%, and 82% of participants, respectively. Clinically meaningful improvements on the MSIS-29 and MSWS-12 were also recorded for 64% and 36% of participants, respectively.

Conclusions: Telerehabilitation was safe and feasible for FES intervention, and improvements in functional mobility and QOL were observed. Telerehabilitation to monitor FES may improve access and reduce patient burden; therefore, studying its efficacy is warranted.

Timely diagnosis of multiple sclerosis (MS) is a challenge due to factors such as prompt identification of symptoms and consequent delays in hospital visits and treatment initiation. In part to address this challenge, an expert scientific advisory panel of clinical nurse practitioners (CNPs) from different European nations was convened by Viatris on October 25, 2022, in Amsterdam, the Netherlands. This meeting was an interactive discussion to understand the role of clinical nurse practitioners in MS management. The objectives were to (1) understand the current delays in MS diagnosis from the perspective of expert CNPs; (2) determine the role of the CNP in MS management; and (3) identify the opportunities to improve accessibility, foster collaboration among stakeholders, and promote initiatives to educate people with MS. The recommendations of the panel underline the multidimensional role of CNPs in the management of MS at all stages. Health care stakeholders need to work together to achieve better access to treatment regimens and facilitate outcomes in the management of MS through shared decision-making and follow-ups. Further exploration of the role of CNPs in the management of MS, as well as recommendations for early diagnosis, will help both general practitioners and specialists better manage MS care.