International journal of MS care最新文献

{"title":"Letter From the Editor.","authors":"M Alissa Willis","doi":"10.7224/1537-2073-26.3.iv","DOIUrl":"https://doi.org/10.7224/1537-2073-26.3.iv","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 3","pages":"iv"},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11096851/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141064563","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":"Stigma in Multiple Sclerosis: A Narrative Review of Current Concepts, Measures, and Findings","authors":"Sasha I. Winston-Khan, Brian C. Healy, Sydney B. Kehoe, Jonathan D. Zurawski, Tarun Singhal, Bonnie I. Glanz","doi":"10.7224/1537-2073.2023-047","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-047","url":null,"abstract":"\u0000 ACTIVITY AVAILABLE ONLINE: To access the article and evaluation online, go to https://www.highmarksce.com/mscare.\u0000 TARGET AUDIENCE: The target audience for this activity is physicians, advanced practice clinicians, nursing professionals, psychologists and other mental health professionals, social workers, and other health care providers involved in the management of patients with multiple sclerosis (MS).\u0000 LEARNING OBJECTIVES: Recognize the unmet need for effective and direct intervention strategies for individuals with MS that correctly target specific stigma type. Describe the 3 major stigma types in order to be able to select a stigma instrument that allows the clinician to differentiate among experienced, anticipated, and internalized stigma.\u0000 ACCREDITATION:\u0000 In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Intellisphere, LLC. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the health care team.\u0000 This activity was planned by and for the health care team, and learners will receive 1.0 Interprofessional Continuing Education (IPCE) credit for learning and change.\u0000 PHYSICIANS: The CMSC designates this journal-based activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.\u0000 NURSES: The CMSC designates this enduring material for 1.0 contact hour of nursing continuing professional development (NCPD) (none in the area of pharmacology).\u0000 PSYCHOLOGISTS: This activity is awarded 1.0 CE credits.\u0000 SOCIAL WORKERS: As a Jointly Accredited Organization, the CMSC is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved under this program. Regulatory boards are the final authority on courses accepted for continuing education credit. Social workers completing this course receive 1.0 general continuing education credits.\u0000 DISCLOSURES: It is the policy of the Consortium of Multiple Sclerosis Centers to mitigate all relevant financial disclosures from planners, faculty, and other persons that can affect the content of this CE activity. For this activity, all relevant disclosures have been mitigated.\u0000 Francois Bethoux, MD, editor in chief of the International Journal of MS Care (IJMSC), has served as physician planner for this activity. He has disclosed no relevant financial relationships. Alissa Mary Willis, MD, associate editor of IJMSC, has disclosed no relevant financial relationships. Author Sasha I. Winston-Kahn, BS, has disclosed a financial relationship with Adelphi Values (employee). Authors Brian C. Healy, PhD, Jona","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"15 2","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141031390","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Mood Associated With Health- and Social-Care–Related Quality of Life in Patients With Advanced Multiple Sclerosis","authors":"M. Ouwerkerk, M. Rietberg, Meike M. W. van der Linden, Bernard M. J. Uitdehaag, Erwin E. H. van Wegen, Vincent de Groot","doi":"10.7224/1537-2073.2023-060","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-060","url":null,"abstract":"\u0000 \u0000 \u0000 Individuals with advanced multiple sclerosis (MS) have complex care requirements and are more likely to use long-term facilities. This study determined the associations between mood and social-care–related quality of life (SCRQOL), and healthrelated quality of life (HRQOL) and examined the association between HRQOL and SCRQOL.\u0000 \u0000 \u0000 \u0000 Baseline data from a cohort study were used. Patients completed questionnaires, including the Hospital Anxiety and Depression Scale (HADS), Adult Social Care Outcomes Toolkit (ASCOT), and EuroQOL 5D-5L (EQ-5D-5L) and EQ-Visual Analogue Scale (EQVAS). Linear regression analyses were employed to assess the relationships between mood and both outcomes of QOL while controlling for relevant confounding factors (βs; 95% CI). The cross-sectional association between SCRQOL and HRQOL was examined using Pearson correlation coefficients (r).\u0000 \u0000 \u0000 \u0000 A total of 75 patients, with a mean age of 56.1 years and a disease duration of 17.3 years, were enrolled from a long-term care facility in The Netherlands. Results showed that after controlling for confounders, HADS is an independent determinant of ASCOT (βs = – .368; 95% CI –.581 - –.154) and EQ-5D-5L (βs = -.297; 95% CI –.507 - –.087). Also, there are significant but weak correlations between ASCOT and EQ-5D-5L (r = .242; 95% CI, .015 - .468), between ASCOT and EQ-VAS (r = .230; 95% CI, .003 - .457) and between EQ-5D-5L and EQ-VAS (r = .227; 95% CI, .000 - .454).\u0000 \u0000 \u0000 \u0000 Mood, especially the depression component, is an important determinant of both HRQOL and SCRQOL in advanced MS. Focusing on mood in health care and social care may contribute to the improvement of QOL in a broader sense.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"94 3","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140254541","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Prevalence of Comorbidities and Their Association With Disability Progression in Individuals With Multiple Sclerosis: A Study From Brazil.","authors":"Marco Aurélio Gralha de Caneda, Camila Batista Oliveira Silva, Maria Cecília Aragon de Vecino","doi":"10.7224/1537-2073.2023-103","DOIUrl":"10.7224/1537-2073.2023-103","url":null,"abstract":"<p><strong>Background: </strong>Comorbidities negatively impact the course of multiple sclerosis (MS). Identifying them is essential, as they represent potentially modifiable prognostic factors that can adversely influence the disease course. However, comorbidity prevalence remains underexplored in certain populations, including in individuals in Brazil.</p><p><strong>Methods: </strong>In this cross-sectional study, we describe the frequency of comorbidities and their correlation with MS disability progression in a Brazilian population by reviewing the medical records of patients from a single MS center in Brazil. Preexisting comorbidities and those present at the time of MS diagnosis were screened. We assessed the prevalence of comorbidities, their prevalence ratios (PR) and the association between them, their number, and the confirmed disability worsening (CDW) that emerged during the follow-up visits.</p><p><strong>Results: </strong>Comorbidities were present in 68.9% of individuals. The most prevalent comorbidities included cardiovascular diseases (19.3%), migraine (13.3%), psychiatric disorders (12.4%), smoking (12.4%), autoimmune diseases (12.0%), respiratory diseases (10.3%), and neoplasms (5.6%). Patients with 1 comorbidity and those with multiple comorbidities (≥ 3) had a significant PR for CDW (2.67, <i>P</i> = .01; 1.25, <i>P</i> = .03, respectively). Cardiovascular and autoimmune diseases presented significant PR for CDW (2.28, <i>P</i> = .03; 4.2, <i>P</i> = .004, respectively).</p><p><strong>Conclusions: </strong>Comorbidities are more prevalent among Brazilian individuals with MS than in the general population and are associated with disease progression. Identifying and managing them may mitigate their adverse effects on disease course.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"239-246"},"PeriodicalIF":0.0,"publicationDate":"2024-03-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11377689/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142154013","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 EDITOR.","authors":"Francois Bethoux","doi":"10.7224/1537-2073-26.2.viii","DOIUrl":"https://doi.org/10.7224/1537-2073-26.2.viii","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 2","pages":"viii"},"PeriodicalIF":0.0,"publicationDate":"2024-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10930807/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140119482","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":"Recognition, Description, and Variability of Spasticity in Individuals With Multiple Sclerosis and Potential Barriers to Clinician-Patient Dialogue: Results From SEEN-MSS, a Large-Scale, Self-Reported Survey.","authors":"Ben Thrower, Scott D Newsome, Barry Hendin, Sherry Danese, Jenifer Patterson, Robert Chinnapongse","doi":"10.7224/1537-2073.2022-115","DOIUrl":"10.7224/1537-2073.2022-115","url":null,"abstract":"<p><strong>Background: </strong>The experience with spasticity varies among individuals with multiple sclerosis and spasticity (MSS), as they may not recognize it as spasticity or have the language to describe their symptoms. This can lead to potential delays in diagnosis and treatment.</p><p><strong>Methods: </strong>Symptoms and Emotions Exploration Needed in Multiple Sclerosis Spasticity was an online survey completed by 1177 individuals with MSS in 2021. It sought to capture symptoms of spasticity, variability of symptoms, specific spasticity triggers, and how conversations with physicians were initiated.</p><p><strong>Results: </strong>The mean age of the cohort was 56.8 years and it was 78% women. Prior to spasticity onset, 65% of respondents felt minimally prepared or unprepared for possibly developing spasticity and were unaware that spasticity manifests as part of MS. Eighty percent experienced spasticity daily, which was variable in severity and duration. Spasticity was triggered by a range of factors and 90% of those surveyed were unable to predict when it would occur or its severity. Day-to-day variability of spasticity prevented 65% of respondents from doing things they wished to do. Sixty percent were confused by their symptoms, not recognizing them as spasticity. Although 91% reported experiencing muscle spasms, only 69% used \"muscle spasms\" to describe their symptoms. Other descriptors included \"muscle tightness,\" \"stiffness,\" \"cramping,\" and \"pain.\" After recognizing spasticity, 78% proactively initiated discussions with their physicians, 52% wished they had done so sooner, and 42% delayed the conversation by up to or more than a year.</p><p><strong>Conclusions: </strong>Results emphasize the variable nature of spasticity and the lack of a common language to describe symptoms, underscoring the importance of education, earlier recognition, and customized treatments tailored to the severity and duration of spasticity symptoms.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"75-80"},"PeriodicalIF":0.0,"publicationDate":"2024-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10930809/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42222782","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 Individuals Newly Diagnosed With Multiple Sclerosis Through the Lens of the COM-B Model.","authors":"Trinh L T Huynh, Whitney N Neal, Elizabeth A Barstow, Robert W Motl","doi":"10.7224/1537-2073.2022-095","DOIUrl":"10.7224/1537-2073.2022-095","url":null,"abstract":"<p><strong>Background: </strong>Physical activity (PA) is a promising intervention for disease modification and symptom management in multiple sclerosis (MS); however, there is a lack of research focusing on PA behavior change interventions for persons newly diagnosed with MS. Such PA behavior change interventions should be developed based on a strong empirical foundation of understanding the behavior and its determinants (ie, what to target for changes to occur). To that end, this qualitative study examined factors explaining PA in persons newly diagnosed with MS and identified potential targets for future behavior change intervention development based on the Capability-Opportunity-Motivation-Behavior (COM-B) model.</p><p><strong>Methods: </strong>Twenty individuals diagnosed with MS within the past 2 years underwent one-on-one semistructured interviews using questions developed based on the COM-B model. Data were analyzed using reflective thematic analysis, and the identified themes were then mapped with the COM-B model.</p><p><strong>Results: </strong>Factors explaining PA in the study sample were identified across the COM-B components. The typical factors include knowledge and skills to sufficiently engage in PA with appropriate approaches, ability to adapt and navigate through new environmental and social difficulties after diagnosis, and motivation resulting from a combination of factors, such as outcome expectation, belief of capabilities, role/identity, reinforcement, and emotions.</p><p><strong>Conclusions: </strong>The COM-B model was applied successfully in this study to understand PA behavior and identify potential targets for behavior change in individuals newly diagnosed with MS. Future behavior change interventions should consider addressing these factors to generate effective PA behavior change in this population.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"49-56"},"PeriodicalIF":0.0,"publicationDate":"2024-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10930808/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47663210","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 Use of Long-Arm Serial Casting to Manage Multiple Sclerosis Spasticity: A Case Report","authors":"Christine Hampton","doi":"10.7224/1537-2073.2023-024","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-024","url":null,"abstract":"\u0000 Spasticity is common among individuals with multiple sclerosis (MS) and can have negative implications. Casting is a treatment intervention that is used to manage spasticity. The use of casting has been studied in individuals with brain injury and stroke, but no publications were found for its use in persons with MS. An individual with MS with upper extremity spasticity participated in long-arm serial casting, bivalve cast fabrication, and additional targeted therapeutic interventions over the course of 17 visits. Spasticity, pain, strength, passive range of motion (PROM), skin, and function were assessed. Spasticity and PROM improved. Increased strength was found in shoulder flexion, elbow flexion/extension, and supination. Active range of motion with resistance was possible and pain-free after the intervention for abduction, horizontal abduction, horizontal adduction, and external rotation. Furthermore, increased functional use including feeding, dressing, and bathing was achieved.","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"331 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140417221","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Smoking and Health-Related Quality of Life in Patients With Multiple Sclerosis From Latin America","authors":"E. Carnero Contentti, Juan I. Rojas, S. Giachello, Paula Henestroza, Pablo A Lopez","doi":"10.7224/1537-2073.2023-053","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-053","url":null,"abstract":"\u0000 \u0000 \u0000 Tobacco smoking is an important, modifiable, environmental risk factor for multiple sclerosis (MS) with a relevant impact on health-related quality of life (HRQOL). We aimed to assess the use of tobacco in individuals with MS from Latin America (LATAM), and its impact on HRQOL.\u0000 \u0000 \u0000 \u0000 We conducted a cross-sectional study based on a LATAM web-based survey. Demographics, social and clinical data, information on physical disability, and HRQOL scores were collected using the MS Impact Scale-29 (MSIS-29), the Fatigue Severity Scale (FSS), and the Hospital Anxiety and Depression Scale-Anxiety (HADS-A). Individuals with MS were classified at the time of the survey as follows: never-smokers (ie, patients who reported they had never smoked), past smokers (those who had smoked tobacco but not during the past year), or current smokers. For the analysis, groups were compared.\u0000 \u0000 \u0000 \u0000 425 patients (74.6% female) from 17 LATAM countries were included, mean age 43.6 ± 11 years and median Expanded Disability Status Scale score 2. There were 122 (28.7%) current smokers, 178 (41.9%) past smokers, and 125 (30.4%) never-smokers. Current smokers had significantly higher MSIS-29 physical (physical worsening), FSS (fatigue), and HADS-A (anxiety) scores compared with past and never-smokers after being adjusted for covariables. No significant differences were observed in any of the other analyzed demographic, clinical, and therapeutic variables. Thirty percent of the current and past smokers groups had never had their neurologists discuss smoking cessation with them.\u0000 \u0000 \u0000 \u0000 Individuals with MS who were current smokers had higher fatigue and anxiety scores and worse HRQOL compared with past and never-smokers.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"21 6","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140436451","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Impact of COVID-19 on Fatigue in Multiple Sclerosis","authors":"Zade Abou-Rass, Jennie Feldpausch, Prudence Plummer, Nora E. Fritz","doi":"10.7224/1537-2073.2023-031","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-031","url":null,"abstract":"\u0000 \u0000 \u0000 Although the COVID-19 quarantine required everyone to make lifestyle changes, it may have had especially profound implications for individuals who experience multiple sclerosis (MS)-related fatigue. Individuals with MS who suffer from fatigue are already predisposed to inactivity and social isolation and are at risk of worsening symptoms. The objective of this study was to examine the impact of the COVID-19 national quarantine and related restrictions on the mental, emotional, and physical fatigue in persons with MS in the United States.\u0000 \u0000 \u0000 \u0000 We conducted a survey open to all adults (> 18 years) with MS within the United States. The survey gathered demographic information and asked how the COVID-19 pandemic impacted their physical, mental, and emotional fatigue.\u0000 \u0000 \u0000 \u0000 The survey was completed by 600 individuals, 478 with relapsing MS and 122 with progressive MS. There was a significant 2-way interaction for time by fatigue type; both physical and emotional fatigue significantly increased during the pandemic (P < .01) and remained significantly higher after the pandemic than prior to the pandemic (P < .01). Mental fatigue increased significantly during the pandemic (P < .01) and although it remained higher, on average, after the pandemic, it was not significantly different than prepandemic.\u0000 \u0000 \u0000 \u0000 Individuals with MS experienced increases in physical, mental, and emotional fatigue over the course of the COVID-19 quarantine. Even after the lifting of quarantine restrictions, these levels have not returned to baseline. To adequately address fatigue, it is critical that health care professionals inquire about all types of fatigue in persons with MS.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"43 47","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-02-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139775734","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}