International journal of MS care最新文献

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.

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.