International journal of MS care最新文献

{"title":"LETTER FROM THE EDITORS: TRIBUTES TO JUNE HALPER.","authors":"Francois Bethoux, M Alissa Willis","doi":"10.7224/1537-2073-26.iv","DOIUrl":"https://doi.org/10.7224/1537-2073-26.iv","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"iv-viii"},"PeriodicalIF":0.0,"publicationDate":"2024-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11411634/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142286433","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Occupation-Based Intervention for People With Multiple Sclerosis: A Feasibility Study.","authors":"Sara Afshar, Nazila Akbarfahimi, Mina Ahmadi Kahjoogh, Mehdi Rassafiani, Mojtaba Azimian, Terry K Crowe","doi":"10.7224/1537-2073.2022-104","DOIUrl":"https://doi.org/10.7224/1537-2073.2022-104","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"254-258"},"PeriodicalIF":0.0,"publicationDate":"2024-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11403155/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142286434","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluation of a Quality Measure for Multiple Sclerosis Care: Disease-Modifying Therapy Initiation at the University of North Carolina's Outpatient Neurology Clinic.","authors":"Alissa Clayton, Sidrah Alam, Emily Hoskins, Seena Cherian, Stephanie Iyer","doi":"10.7224/1537-2073.2023-069","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-069","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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%).</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"247-253"},"PeriodicalIF":0.0,"publicationDate":"2024-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11391097/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142286432","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Outcomes of a Day Wellness Program for People With Multiple Sclerosis Before and During the COVID-19 Pandemic.","authors":"Tiffany Malone, John A Schafer, Lacey Sayre, Brian Hutchinson","doi":"10.7224/1537-2073.2023-018","DOIUrl":"10.7224/1537-2073.2023-018","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"233-238"},"PeriodicalIF":0.0,"publicationDate":"2024-08-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11350406/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142107203","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Shedding Light on the Black Box of Rehabilitation: Differential Short- and Long-Term Effects of Multidisciplinary Multiple Sclerosis Rehabilitation.","authors":"Philipp Trénel, Finn Boesen, Anders Guldhammer Skjerbæk, Thor Petersen, Peter Vestergaard Rasmussen, Michael Nørgaard","doi":"10.7224/1537-2073.2022-071","DOIUrl":"10.7224/1537-2073.2022-071","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>MFA groups varied in age (<i>P</i> = .036), MS type (<i>P</i> = .002), Expanded Disability Status Scale score (<i>P</i> < .001), time since diagnosis (<i>P</i> = .002), and FAMS at baseline (<i>P</i> < .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, <i>P</i> < .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 (<i>P</i> =.001), 5.6 (<i>P</i> = .196), 8.5 (<i>P</i> = .008), -1.4 (<i>P</i> = .548), and 17.9 (<i>P</i> = .012) for the Resilience, Cognitive Function, Energy, Physical Function, and Personal Needs groups, respectively.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"224-232"},"PeriodicalIF":0.0,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11333915/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142008776","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Feasibility of Telerehabilitation-Monitored Functional Electrical Stimulation on Walking and Quality of Life in People With Multiple Sclerosis: A Case Series.","authors":"Elliot J Gann, Mark M Mañago, Diane D Allen, Elie Celnikier, Valerie J Block","doi":"10.7224/1537-2073.2023-081","DOIUrl":"10.7224/1537-2073.2023-081","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"214-223"},"PeriodicalIF":0.0,"publicationDate":"2024-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11317766/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141971066","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Clinical Nurse Practitioner's Essential Role in Early Diagnosis and Management of Multiple Sclerosis in Europe: A Consensus Report.","authors":"Francesco Pastore, Miguel Angel Robles Sanchez, Catharina Maria Harrison, Konstantinos Ntinoulis, Sabine Staller, Tatsi Theano, Santosh B Shirol","doi":"10.7224/1537-2073.2023-070","DOIUrl":"10.7224/1537-2073.2023-070","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"208-213"},"PeriodicalIF":0.0,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11298979/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141893385","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Effect of the Response Shift Phenomenon on the Results of an Integrative Medicine Workshop Series.","authors":"Megan Weigel","doi":"10.7224/1537-2073.2023-006","DOIUrl":"10.7224/1537-2073.2023-006","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"207"},"PeriodicalIF":0.0,"publicationDate":"2024-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11298978/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141893386","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Descriptive Analysis of Health Disparities Between Black and White People With Multiple Sclerosis in the Deep South.","authors":"Elissa M Dykes, Ghaida K Zaid, Surachat Ngorsuraches, William Meador","doi":"10.7224/1537-2073.2023-084","DOIUrl":"10.7224/1537-2073.2023-084","url":null,"abstract":"<p><strong>Background: </strong>Black people with multiple sclerosis (MS) have a worse disease course and higher rates of progression than White people with MS. Contributing factors to health disparities are understudied.</p><p><strong>Methods: </strong>Data were collected retrospectively from the electronic medical records of 500 people with MS treated between 2013 and 2022 at a university comprehensive MS center in a southern state. Multiple logistic regression analyses were used to determine the associations between 2 disability outcomes (ie, low vs high Expanded Disability Status Score [EDSS] and ambulatory assistance [AMB] requirements) and age, sex, body mass index (BMI), MS type, disease duration, hypertension status, diabetes status, smoking status, adjusted gross income, and health insurance type for Black people with MS and White people with MS.</p><p><strong>Results: </strong>Of the cohort, 39.2% identified as Black people with MS and the rest were White people with MS. Approximately 80% of White people with MS had relapsing MS (RMS) vs almost 90% of Black people with MS. Black people with MS were more likely to have a higher EDSS (OR 5.0, CI 3.0-8.4) and AMB (OR, 2.8; 95% CI, 1.6-4.8) than White people with MS. Among White people with MS, women (OR, 0.5; 95% CI, 0.3-0.9) and people with RMS (OR, 0.13; 95% CI 0.06-0.3) were less likely to have higher EDSS scores. Among Black people with MS, neither female sex nor RMS status was associated with a lower risk of having a higher EDSS (OR, 0.685; <i>P</i> = .43 and OR, 0.394; <i>P</i> = .29, respectively).</p><p><strong>Conclusions: </strong>The disparity in disability outcomes between Black people with MS and White people with MS may be driven by more disabling courses for Black people with RMS and by female sex, though further study is needed to determine causes for this outcome.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 ","pages":"167-173"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11223039/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141534390","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Measurement Properties of Backward Walking and Its Sensitivity and Feasibility in Predicting Falls in People With Multiple Sclerosis.","authors":"Patrick G Monaghan, Taylor N Takla, Alexis N Chargo, Erin M Edwards, Biaohua Yu, Emily Myers, Ana M Daugherty, Nora E Fritz","doi":"10.7224/1537-2073.2023-091","DOIUrl":"10.7224/1537-2073.2023-091","url":null,"abstract":"<p><strong>Background: </strong>People with multiple sclerosis (MS) experience mobility impairments that elevate fall risk, increasing the need to identify clinical measures that accurately predict falls. Backward walking (BW) better differentiates fallers from nonfallers in MS. However, no studies have reported the measurement properties of the backward walking Timed 25-Foot Walk (B-T25-FW) and BW metrics, like BW velocity. Additionally, it is unknown whether BW can predict future falls in MS or its link to activity levels. This study assessed the reliability and responsiveness of B-T25-FW and BW metrics, including BW velocity. It also examined whether BW could predict falls at 3 and 6 months and its association with activity levels.</p><p><strong>Methods: </strong>During 2 separate visits, 23 people with MS completed the forward walking Timed 25-Foot Walk (F-T25-FW) and B-T25-FW, as well as forward walking and BW assessments in which spatiotemporal measures were recorded. Test-retest reliability was determined with intraclass correlation coefficients, and minimum detectable changes were calculated. Correlation analyses explored the relationship between BW velocity, B-T25-FW, prospective falls, and activity levels.</p><p><strong>Results: </strong>B-T25-FW and BW velocity exhibited excellent test-retest reliability. Large effect sizes to interpret clinically meaningful change in the B-T25-FW and BW velocity were also found. Both metrics demonstrated modest negative correlations with falls at 3 and 6 months and correlated strongly with very active minutes at 3- and 6-months post study.</p><p><strong>Conclusions: </strong>The B-T25-FW and BW velocity are effective and reliable in clinical use for evaluating functional mobility in people with MS, are sensitive enough to detect subtle changes, and may be a meaningful marker for tracking disease progression and treatment efficacy.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 ","pages":"155-166"},"PeriodicalIF":0.0,"publicationDate":"2024-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11195663/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141446177","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}