International journal of MS care最新文献

{"title":"Assessment of Vaccine Literacy in People Affected by Multiple Sclerosis: A Cross-Sectional Study From Italy.","authors":"Francesco Pastore, Dania Comparcini, Giancarlo Cicolini, Chiara Esposto, Valentina Simonetti, Pietro Iaffaldano","doi":"10.7224/1537-2073.2024-061","DOIUrl":"10.7224/1537-2073.2024-061","url":null,"abstract":"<p><strong>Background: </strong>Vaccine literacy (VL) is an individual's ability to obtain, understand, and use information related to vaccines to make informed health decisions. This concept is strongly correlated with vaccine hesitancy, which is common among people with multiple sclerosis (MS). The study aims to assess VL in people with MS.</p><p><strong>Methods: </strong>A cross-sectional study was conducted from April 2023 to September 2023 at the MS Policlinic of Bari. A structured questionnaire of 10 questions from the European Health Literacy Survey Consortium covered vaccination behavior, beliefs, trust, and perceived risks, and 4 questions from the Health Literacy Population Survey 2019-2021 Vaccine (HLS19-VAC) tool covered access, understanding, evaluation, and application of vaccination information.</p><p><strong>Results: </strong>There were 157 respondents (mean age, 34.77 years; 86.4% women; 90.4% with relapsing-remitting MS). Fewer than half (41.4%) had a high school diploma, 73.9% were employed, and 93% were satisfied with nursing care. The HLS19-VAC questionnaire results revealed high vaccination adherence (99%) but mixed beliefs about vaccine safety and efficacy. Trust in vaccines was generally high, though VL scores were lower. Significant correlations were found between VL and education level.</p><p><strong>Conclusions: </strong>Findings from this study reveal high vaccination adherence and trust among people with MS, but VL remains low, leading to misconceptions and hesitancy. Interventions tailored to age and education level offered by health care providers, especially MS nurses, are essential to improve VL and reduce vaccine hesitancy.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"27 Q1","pages":"95-102"},"PeriodicalIF":0.0,"publicationDate":"2025-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11959115/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143763714","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":"Proteomic Biomarker Panel for Gauging Multiple Sclerosis Disease Activity: A Case Series From Real-World Use.","authors":"Taylor Gonyou, Patricia Izbicki, Jim Eubanks, Ferhan Qureshi, William Boudouris, Martin Belkin, Sonda Rossman, Yang Mao-Draayer","doi":"10.7224/1537-2073.2024-094","DOIUrl":"10.7224/1537-2073.2024-094","url":null,"abstract":"<p><strong>Background: </strong>Advances in serum proteomics have provided more precise tools for the characterization of multiple sclerosis (MS) and enabled enhanced clinical management of the disease. The multivariate proteomic Multiple Sclerosis Disease Activity (MSDA) test has been analytically and clinically validated.</p><p><strong>Methods: </strong>This is a single-center retrospective case series. Four women with MS were monitored between 2022 and 2023 with up to 2 MSDA time points. Their full clinical histories and exams, along with treatment and MRI changes, were collected with the MSDA tests.</p><p><strong>Results: </strong>Patients' baseline and follow-up MSDA scores were consistent with disease activity, treatment response, and disease stability.</p><p><strong>Conclusions: </strong>We provide a real-world case series to show that MSDA could help to determine MS disease activity at baseline and throughout the disease course. MSDA could help to differentiate clinically stable vs active patients to monitor DMT treatment response.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"27 Q1","pages":"90-94"},"PeriodicalIF":0.0,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11933741/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143709762","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":"Physical Activity Together for MS: Quality Participation Experiences of People With Multiple Sclerosis and Their Caregivers in a Dyadic Physical Activity Intervention.","authors":"Afolasade Fakolade, Miles Lambert, Mariah Keeling, Katherine Cardwell, Emily Broitman, Mark Freedman, Marcia L Finlayson, Amy Latimer-Cheung, Lara A Pilutti","doi":"10.7224/1537-2073.2023-105","DOIUrl":"10.7224/1537-2073.2023-105","url":null,"abstract":"<p><strong>Background: </strong>Despite unequivocal evidence for the benefits of regular physical activity (PA), many people with multiple sclerosis (MS) and their family caregivers find it challenging to fully participate to the same extent as the general population. Achieving full participation in PA requires addressing both quantity and quality of participation. Although elements fostering quality participation (QP) in people with disabilities are increasingly recognized, our knowledge of how QP is experienced and fostered in dyadic PA interventions targeting MS dyads is limited. Therefore, we aimed to explore QP experiences of MS dyads during a 12-week, group-based, dyadic, behavioral PA intervention to inform future efforts to optimize full participation in PA in these groups.</p><p><strong>Methods: </strong>We conducted semistructured interviews with 6 participants who completed the dyadic intervention. Data were inductively analyzed using thematic analysis and deductively mapped to the Quality Parasport Participation Framework.</p><p><strong>Results: </strong>We identified 6 themes mapped to the 6 building blocks (autonomy, belonging, challenge, engagement, mastery, and meaning) of quality participation that provide insights into how people with MS and their caregivers experienced QP in the intervention. Additionally, various intervention characteristics that fostered QP experiences were identified, including the dyadic approach, program duration, financial incentivization, individualized tailoring of program components, group composition and dynamics, facilitator knowledge and expertise related to MS and caregiving, and the opportunity for participants to apply the knowledge gained in the group sessions.</p><p><strong>Conclusions: </strong>Our findings outline QP considerations for researchers and interventionists designing dyadic PA programs in MS, offering insights that can inform the development of such programs to support full participation for both people with MS and their caregivers.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"27 Q1","pages":"82-89"},"PeriodicalIF":0.0,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11923444/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143669717","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":"Final COVID-19 Vaccination Status, Attitude, and Adverse Events Among People With Multiple Sclerosis: A Cross-Sectional Study From Egypt.","authors":"Eman Hamdy, Eman Hamdy Darweesh, Abdallah Dabbas, Sonia El-Bahrawy","doi":"10.7224/1537-2073.2024-057","DOIUrl":"10.7224/1537-2073.2024-057","url":null,"abstract":"<p><strong>Background: </strong>Until the World Health Organization declared an end to COVID-19 as a global health emergency worldwide in 2023, people with multiple sclerosis (MS) were hesitant to get the COVID-19 vaccine. This study aimed to assess the final vaccination status, attitude, and adverse events related to the COVID-19 vaccine among people with MS in Egypt.</p><p><strong>Methods: </strong>A self-administered survey was offered to people with MS who came to the Alexandria University MS Clinic in Egypt between June 2023 and November 2023.</p><p><strong>Results: </strong>Of 150 surveys completed, 77% of participants were women. Their median age was 35.5 years (range, 19-59 years); their median disease duration was 4 years. Only 81 (54%) participants received a COVID-19 vaccine. Of that 81, 81.5% received 2 doses. The median fear of COVID-19 score (FCV-19S) was 11, and 15.3% had high levels of fear. Worrying about the worsening effect of the vaccine on MS (69.3%) and about the long-term adverse events (AEs) of the vaccines (63.3%) were the most common causes of fear. The only factor that was significantly related to receiving the vaccine was the FCV-19S score (<i>P</i> = .049). Among those who received the vaccine, fatigue was the most common AE reported in 48%; 5% had a neurological relapse. No other serious AEs occurred.</p><p><strong>Conclusions: </strong>In this study, almost half of study participants with MS did not receive a COVID-19 vaccination, mainly due to fear. AEs attributed to the vaccine were mild. Implementing educational programs during future pandemics will be necessary to improve the vaccination rates of people with MS.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"27 Q1","pages":"74-81"},"PeriodicalIF":0.0,"publicationDate":"2025-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11893993/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143605083","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":"Anxiety and Cognition in Multiple Sclerosis: A Narrative Review.","authors":"Roberto Martin Susini, Natalia Ciufia, Aldana Lucía Marinangeli, Ricardo Alonso, María Bárbara Eizaguirre","doi":"10.7224/1537-2073.2024-037","DOIUrl":"10.7224/1537-2073.2024-037","url":null,"abstract":"<p><strong>Background: </strong>People with multiple sclerosis (MS) often experience psychiatric symptoms, such as anxiety and depression, that impact disease progression and quality of life. Cognitive impairment, particularly in processing speed and episodic memory, is common in MS. There are several studies studying the relationship between anxiety and cognition in the population with MS. This study reviews that literature.</p><p><strong>Methods: </strong>This bibliographic review covers publications in Spanish and English from January 2006 to June 2022. It focuses on quantitative investigations of the relationship between anxiety symptoms and cognitive variables in people with MS.</p><p><strong>Results: </strong>A majority of studies found an association between anxiety and cognition in people with MS. Anxiety significantly affects information processing speed, learning, memory, attention, working memory, and verbal fluency in people with MS. However, some studies find no association. The impact of depressive symptoms and the bidirectional relationship between anxiety and cognition are highlighted.</p><p><strong>Conclusions: </strong>Anxiety in people with MS is associated with cognitive impairment. Further research is needed to understand the mechanisms and establish causal relationships between anxiety and cognition in this population.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"27 Q1","pages":"63-73"},"PeriodicalIF":0.0,"publicationDate":"2025-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877130/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143556830","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":"Psychosocial Factors are Associated With Walking-Related Goal Attainment in Multiple Sclerosis: A Preliminary Study.","authors":"Kayla E Gomes, Kaitlin E Riegler, Heather M DelMastro, Aaron P Turner, Lindsay O Neto, Elizabeth S Gromisch","doi":"10.7224/1537-2073.2024-045","DOIUrl":"10.7224/1537-2073.2024-045","url":null,"abstract":"<p><strong>Background: </strong>Many individuals with multiple sclerosis (MS) have difficulty walking, which may prompt a physical therapy (PT) referral. Psychosocial factors, including mood, pain, and social support, may affect patients' participation and overall success in meeting PT goals; however, this has yet to be examined in MS. This study aimed to explore the associations between walking-related PT goal attainment and psychosocial factors.</p><p><strong>Methods: </strong>Participants (N = 41) were individuals with MS from a larger study who engaged in PT per usual care during a 2-year study window. They had at least 1 walking-related goal in their PT plan of care, which could be based on subjective (eg, Multiple Sclerosis Walking Scale-12) or objective measurement (eg, 6-Minute Walk Test). Examined psychosocial factors included impact of pain and fatigue, depression and anxiety symptom severity, and social support. Group differences were examined using bivariate analyses.</p><p><strong>Results: </strong>Participants who met all their walking-related PT goals had lower levels of pain impact (14.15 ± 5.22 vs 19.14 ± 5.29; <i>P</i> = .004; <i>d</i> = 0.95) and symptoms of depression (5.45 ± 3.53 vs 7.71 ± 3.51; <i>P</i> = .046; <i>d</i> = 0.64) and greater social support (median: 14.00 vs 12.00; <i>P</i> = .019 <i>d</i> = 0.79).</p><p><strong>Conclusions: </strong>These findings highlight the potential links between psychosocial factors and the attainment of walking-related goals by individuals who have MS. Further evaluation into psychosocial impact on PT plans of care is needed to help guide targeted assessment and intervention approaches.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"27 Q1","pages":"56-62"},"PeriodicalIF":0.0,"publicationDate":"2025-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11848524/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143491937","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":"Financial Assistance Value for Equitable Access to Specialty Medications for Adults With Multiple Sclerosis Using Health System Pharmacy Services.","authors":"Julie Wawrzyniak Heppner, Andrew Choma, Tiffany Otto, Erin Collins","doi":"10.7224/1537-2073.2023-095","DOIUrl":"10.7224/1537-2073.2023-095","url":null,"abstract":"<p><strong>Background: </strong>Contributing to the total economic burden of multiple sclerosis (MS) in the United States, the estimated direct medical costs of MS in 2019 were $63.3 billion, with medications accounting for over half of these expenses.¹ MS disease-modifying therapy (DMT) costs can limit access, causing patients not to adhere to the medication regimen, which may lead to relapse, progression, disability, hospitalizations, and increased health care costs. Integrated health system specialty pharmacies (HSSPs) provide assistance to patients to alleviate the financial burden of specialty medications. MS center medication access specialists (MAS) obtain assistance for DMTs. This study quantifies the financial assistance obtained for patients with MS receiving medications through an integrated HSSP or infusion center.</p><p><strong>Methods: </strong>This single-center retrospective chart review evaluated claims data for University of Rochester MS Center patients receiving financial assistance for MS specialty medications dispensed through the HSSP or infused at the MS center between July 20, 2020, and July 20, 2022. Descriptive statistics were used to assess all outcomes data.</p><p><strong>Results: </strong>Patients received $3,377,172.96 in financial assistance. The median financial assistance used per patient per day of medication coverage was $2.08 (IQR, 12.02). The median out-of-pocket cost per patient per day after financial assistance was $0 (IQR, 0). Manufacturers provided the most financial support with a total contribution of $2,404,883.31, followed by grant foundations, which provided $574,659.27. Internal facility funds and the New York State Elderly Pharmaceutical Insurance Coverage program provided $241,377.97 and $156,252.41, respectively.</p><p><strong>Conclusions: </strong>Patients at this MS center were able to save thousands of dollars in out-of-pocket costs using financial assistance. Integrated HSSPs and MAS teams can help reduce the out-of-pocket cost of MS specialty medications, which may improve access to these medications.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"27 Q1","pages":"50-55"},"PeriodicalIF":0.0,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11830990/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143440531","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":"Unique Health Care Delivery Considerations in Rural America.","authors":"Kaitlyn Palmer, Jill Cochran, Marisa McGinley","doi":"10.7224/1537-2073.2024-081","DOIUrl":"10.7224/1537-2073.2024-081","url":null,"abstract":"<p><p>Rural regions face significant health care disparities, including decreased access to insurance, increased access barriers to specialty care, worse medical outcomes, and increased mortality rates. People with multiple sclerosis (MS) residing in rural regions in the United States, as well as globally, face similar barriers to accessing MS care and experience poorer disease outcomes. Barriers to health care access include cultural and financial constraints, scarcity of services, a lack of trained physicians, insufficient public transport, and poor availability of broadband internet service. The Appalachian region, which contains a high degree of rurality, experiences increased disparities compared with the rest of the nation and can be used to highlight the unique challenges rural populations face. Appalachian residents can identify as private, and mistrust is a major factor in providing health care. Increasing the quantity and retention of Appalachian providers is essential to building trust. Still, it has proved difficult due to issues with compensation, taxes, malpractice fees, adverse actions against physicians, and high turnover rates. Telehealth interventions such as Project ECHO (Extension for Community Healthcare Outcomes) have improved rural outcomes in multiple diseases, including MS, but limited technology and technological literacy in rural areas impede the implementation of these interventions. Given the increasing rural population and ongoing disparities these communities face, there is a need to develop targeted interventions to improve access and outcomes in rural populations.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"27 Theme","pages":"T2-T6"},"PeriodicalIF":0.0,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877128/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143567055","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":"LETTER FROM THE GUEST EDITOR.","authors":"Daniel Ontaneda","doi":"10.7224/1537-2073.2024-104","DOIUrl":"10.7224/1537-2073.2024-104","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"27 Theme","pages":"T1"},"PeriodicalIF":0.0,"publicationDate":"2025-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11877129/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143567051","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":"Physical Activity in Multiple Sclerosis: Real-World Data From Saskatchewan, Canada.","authors":"Katherine B Knox, Akhtarul Islam, Thuy Le, Sarah J Donkers, Charity Evans, Hyun J Lim","doi":"10.7224/1537-2073.2024-006","DOIUrl":"10.7224/1537-2073.2024-006","url":null,"abstract":"<p><strong>Background: </strong>Physical activity guidelines for multiple sclerosis (MS) were first published in 2013. Physical activity is safe and beneficial in MS, yet it is unclear if physical activity levels are changing in real-world settings.</p><p><strong>Methods: </strong>The primary objective of this study is to determine if the physical activity levels of people with MS are changing. Between September 1, 2014, and February 22, 2022, when people first accessed a provincial MS drugs program in Saskatchewan, Canada, they were invited to complete the Godin Leisure-Time Exercise Questionnaire by mail. Scatter plots of total physical activity (TPA) and health contribution (HC) scores were generated from each person's questionnaire. Multivariable linear regression explored associations and interactions between disease-modifying treatment (DMT), sex, age, age at MS onset, and disease duration on physical activity level.</p><p><strong>Results: </strong>The response rate was 50.8% (505 responses from 993 requests). Of the respondents, 69.7% were female; the mean age was 42.8 (± 11.5) years; median MS disease duration was 6.0 years (IQR, 2.0-14.0); and 47.4% had prior DMT exposure. There was no significant change in physical activity levels of new registrants over 7 years (regression slopes TPA: 0.71, <i>P</i> = .26; HC: 0.61, <i>P</i> = .21). Men reported higher physical activity levels than women (TPA: β = 11.95; <i>P</i> < .001; HC: β = 6.65; <i>P</i> < .001). There were interactions between age and disease duration on activity scores (TPA: β = 0.03; <i>P</i> = .003; HC: β = 0.03; <i>P</i> < .001). DMT exposure was not associated with physical activity.</p><p><strong>Conclusions: </strong>Physical activity levels of people with MS remained suboptimal for health benefits over a 7-year period. Future research should include how to use physical activity guidelines to impact real-world activity levels.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"27 Q1","pages":"42-49"},"PeriodicalIF":0.0,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11808384/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143390910","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}