International journal of MS care最新文献

{"title":"Hand Grip Strength as a Predictive Tool for Upper Extremity Functionality, Balance, and Quality of Life in Patients With Multiple Sclerosis","authors":"M. Seferoğlu, Meliha Kasapoğlu Aksoy, Abdulkadir Tunç","doi":"10.7224/1537-2073.2022-030","DOIUrl":"https://doi.org/10.7224/1537-2073.2022-030","url":null,"abstract":"\u0000 \u0000 \u0000 Upper extremity strength and function are rarely assessed in routine multiple sclerosis (MS) care. This study aimed to evaluate hand muscle strength and functionality in individuals with MS and investigate correlations with upper extremity function, cognitive status, health-related quality of life (HRQOL), and balance.\u0000 \u0000 \u0000 \u0000 A cross-sectional study was conducted with 45 consecutive individuals with MS between the ages of 18 and 65. Upper limb motor strength was evaluated using a hand grip strength dynamometer. Upper limb functional capacity was assessed using the Nine-Hole Peg Test (9HPT) and the Duruoz Hand Index (DHI). Balance, coordination, and falls were measured with the Berg Balance Scale (BBS), Falls Efficacy Scale (FES), and the 30-Second Chair Stand Test (30CST). Cognitive function was evaluated using the Montreal Cognitive Assessment instrument and the Symbol Digit Modalities Test. Level of HRQOL was assessed using the self-reported 54-item MS Quality of Life-54 questionnaire.\u0000 \u0000 \u0000 \u0000 Out of the 45 participants (80% women, mean age 36.6 ± 8.6 years), higher hand grip dynamometer measures were strongly correlated with better DHI, 9HPT, BBS, FES, and 30CST scores. In the regression analysis, a 1-unit increase in dynamometer measures led to a 0.383 increase in overall HRQOL score.\u0000 \u0000 \u0000 \u0000 This study demonstrates that increased hand grip strength (HGS) is associated with better hand functionality, balance, and HRQOL in individuals with MS. It provides evidence to support more systematic measurement of HGS in the care of persons with MS.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"22 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140487805","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":"Awareness and Utilization of Public Physiotherapy Health Care Services to Support People With Multiple Sclerosis: A Health Care Service Audit.","authors":"Saduni Jasin-Pathiranage, Lisa B Grech, Charlotte Scroggie, Phoebe Sansom","doi":"10.7224/1537-2073.2022-057","DOIUrl":"10.7224/1537-2073.2022-057","url":null,"abstract":"<p><strong>Background: </strong>To maximize functioning and well-being in people with multiple sclerosis (MS), physiotherapy consultation is recommended at the point of diagnosis and throughout the disease course. We wanted to determine whether patients with MS being managed through a large metropolitan hospital in Australia accessed physiotherapy input as part of their MS management consistent with evidence-based recommendations and to identify patients' self-reported physiotherapy requirements, including symptom management, information needs, and service delivery preferences.</p><p><strong>Methods: </strong>Surveys were sent to 597 MS clinic patients, and 160 responded. Data were analyzed using descriptive methods to derive frequencies and percentages. The survey consisted of 16 questions plus 2 optional questions related to sociodemographics (age and postcode).</p><p><strong>Results: </strong>Of 160 respondents, 142 completed all 14 nonoptional questions. One-third of participants (n = 53) were aware of the hospital MS clinic physiotherapy services, with 21.3% (n = 34) saying that they had accessed these services. Conversely, 40.1% of respondents (n = 61) reported having consulted a private physiotherapist. Combined, 52% of respondents reported seeing a physiotherapist. There was a clear preference (94.7%; n = 144) for access to the MS clinic physiotherapy service. The presence of at least 1 current MS-related physiotherapy problem was reported by 82.2 2% of respondents (n = 125). The top ways to access MS-related information were via a specialist MS website (57.6%) and a mobile app (55.6%).</p><p><strong>Conclusions: </strong>There is an unmet need for physiotherapy, and many participants may have foregone services due to unawareness. Improved awareness and uptake of physiotherapy at the point of diagnosis is needed to maximize functioning and well-being in people with MS.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"8-12"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779714/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49151186","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":"Behavioral Interventions to Improve Sleep Outcomes in Individuals With Multiple Sclerosis: A Systematic Review.","authors":"David Turkowitch, Sarah J Donkers, Silvana L Costa, Prasanna Vaduvathiriyan, Joy Williams, Catherine Siengsukon","doi":"10.7224/1537-2073.2022-110","DOIUrl":"10.7224/1537-2073.2022-110","url":null,"abstract":"<p><strong>Background: </strong>Sleep disturbances are common in individuals with multiple sclerosis. The objective of this systematic review was to determine effective behavioral interventions to improve their sleep.</p><p><strong>Methods: </strong>Literature searches were performed in December 2021 in Ovid MEDLINE, Elsevier Embase, and Web of Science, along with hand searching for grey literature and cited references. Four reviewers independently reviewed titles and abstracts (2 reviewers for each article; n = 830) and the full-text articles (n = 81). Consensus for inclusion was achieved by a fifth reviewer. Thirty-seven articles were eligible for inclusion. Four reviewers extracted relevant data from each study (2 reviewers for each article) using a standard data extraction table. Consensus was achieved for completeness and accuracy of the data extraction table by a fifth reviewer. The same 4 reviewers conducted a quality appraisal of each article to assess the risk of bias and quality of the articles, and consensus was achieved by a fifth reviewer as needed. Descriptive data were used for types of interventions, sleep outcomes, results, and key components across interventions.</p><p><strong>Results: </strong>Overall, the cognitive behavioral therapy for insomnia, cognitive behavioral therapy/psychotherapy, and education/self-management support interventions reported positive improvements in sleep outcomes. Quality appraisal scores ranged from low to high, indicating potential for bias.</p><p><strong>Conclusions: </strong>Variability in the intervention type, intervention dose, outcomes used, training/expertise of interventionist, specific sample, and study quality made it difficult to compare and synthesize results. Further research is necessary to demonstrate the efficacy of most of the interventions.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"22-29"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779715/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47152751","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":"M Alissa Willis","doi":"10.7224/1537-2073-26.1.vi","DOIUrl":"https://doi.org/10.7224/1537-2073-26.1.vi","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 1","pages":"vi"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779711/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139424643","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 Role of Clinical Pharmacists in Patient-Centric Comprehensive Multiple Sclerosis Care.","authors":"Jacquelyn Bainbridge, Rebecca Barnhart, Ryan Fuller, Van T Hellerslia, Julie Kidd, Steven Merrill, Emily Volger, Jenelle H Montgomery","doi":"10.7224/1537-2073.2022-051","DOIUrl":"10.7224/1537-2073.2022-051","url":null,"abstract":"<p><strong>Background: </strong>Individuals with multiple sclerosis (MS) may experience a variety of visible and invisible symptoms and, as they age, comorbidities related and unrelated to their MS. This can result in a complex medication regimen that includes disease-modifying therapies, symptom management drugs, and prescriptions for other comorbid disorders.</p><p><strong>Methods: </strong>We reviewed the existing literature to discover how to optimally integrate neurology clinical pharmacists into the MS care team and how clinical pharmacists can directly support both providers and patients through their expertise in pharmacology and medication management.</p><p><strong>Results: </strong>With approaches founded on a shared decision-making process alongside neurology providers, patients, and care partners, clinical pharmacists can help meet the complex challenges of MS care in a variety of ways. Especially within MS clinics, they are well positioned to enhance current neurology practices given their extensive training in comprehensive medication management and their ability to identify nuances in medication management to promote pharmacovigilance and patient-centered care.</p><p><strong>Conclusions: </strong>Neurology clinical pharmacists bring multifaceted medication management and patient counseling and education skills to the MS care team and can support the shared decision-making process by serving as an accessible resource for patients and clinicians. By building trusted partnerships between neurology providers and clinical pharmacists, MS care teams can achieve effective and efficient patient care. Future research should compare clinical and patient-reported outcomes between patients receiving standard care and those receiving multidisciplinary, pharmacist-integrated care.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"1-7"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779712/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49224267","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":"Direct and Indirect Care of Patients With Multiple Sclerosis: Burden on Providers and Impact of Portal Messages.","authors":"Rola Mahmoud, Katie Callahan, Doug Schell, Suzanne Carron, Salim Chahin","doi":"10.7224/1537-2073.2022-102","DOIUrl":"10.7224/1537-2073.2022-102","url":null,"abstract":"<p><strong>Background: </strong>Multiple sclerosis (MS) indirect patient-care time is often underreported and uncompensated. Data on time spent on indirect and direct care by MS providers is lacking.</p><p><strong>Methods: </strong>A survey was designed to understand the practice patterns among MS providers in the United States, including time spent on direct and indirect patient care, as well as managing electronic medical record portal messages. The National MS Society and the American Academy of Neurology facilitated the distribution of the survey to MS providers.</p><p><strong>Results: </strong>Most providers spent at least 1 hour on new and at least 30 minutes on follow-up direct patient care. For indirect patient care, 77% of providers spent more than 1 hour and 57% spent more than 2 hours per day. While some providers have support staff to help with portal messages, many do not have protected time or compensation for portal messages.</p><p><strong>Conclusions: </strong>Multiple sclerosis providers spent a higher-than-average time on direct and indirect patient care tasks, including portal messages, and most lack protected time or compensation for portal messages. These results highlight the potential impact of indirect patient care (notably portal messages) on provider workload and burnout. Better support, protected time and/or compensation for indirect patient care can help ease physician burden and decrease burnout.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"1 1","pages":"13-16"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779709/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41934462","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":"Reasons Patients With Primary Progressive Multiple Sclerosis Contact Their Specialist Nurses.","authors":"Rosaline van den Berg, Katelijn Blok, Nura Tebayna, Monique van Dijk, Joost van Rosmalen, Janet de Beukelaar","doi":"10.7224/1537-2073.2022-056","DOIUrl":"10.7224/1537-2073.2022-056","url":null,"abstract":"<p><strong>Background: </strong>Questions asked by patients with primary progressive multiple sclerosis (PPMS) during patient-initiated MS nurse consultations may contain salient information that can help health care providers understand their needs, which, in turn, can help tailor counseling and treatment.</p><p><strong>Methods: </strong>Records of all patients with PPMS visiting the MS center of a large teaching hospital in the Netherlands between January 2007 and January 2021 were studied retrospectively. Number and type (scheduled or patient initiated) of MS nurse consultations, reasons for consultations (in prespecified categories), and frequency of subsequent referrals were registered. Association between factors (living with partner, Expanded Disability Status Scale score, comorbidities, age, sex) and number of patient-initiated consultations was studied using negative binomial regression analysis.</p><p><strong>Results: </strong>In total, 98 patients with PPMS were included, with 720 MS nurse consultations during follow-up (median duration, 8.1 years), of which 274 (38%) were patient initiated. Patients had a broad spectrum of reasons to contact MS nurses. The most common categories were treatment (36%) and micturition and defecation (31%). Patients living without a partner (incidence rate ratio, 2.340; 95% CI, 1.057-5.178) and male patients (incidence rate ratio, 1.890; 95% CI, 0.925-3.861) consulted MS nurses more frequently. The MS nurses made 146 referrals (20% of all contacts); 59 were after patient-initiated consultation (22%). The most frequent referrals were to neurologists, urologists, and rehabilitation specialists.</p><p><strong>Conclusions: </strong>Multiple sclerosis nurses have a pivotal role in PPMS care, especially for patients living without a partner and male patients. Recurring questions about (new) treatment options illustrate the pressing need for highly effective treatment. Micturition and defecation problems are also a considerable concern and warrant close monitoring.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"30-35"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779713/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43322158","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 Impact of Insurance Restrictions in Newly Diagnosed Individuals With Multiple Sclerosis.","authors":"Ryan Mizell","doi":"10.7224/1537-2073.2022-069","DOIUrl":"10.7224/1537-2073.2022-069","url":null,"abstract":"<p><strong>Background: </strong>The medical system in the United States has been riddled with insurance restrictions used by insurance companies to limit health care costs. The effects of insurance restrictions on patients receiving disease-modifying therapies for multiple sclerosis (MS) have not been specifically studied.</p><p><strong>Methods: </strong>A retrospective cross-sectional study of 52 individuals recently diagnosed with MS at a tertiary neurology clinic was conducted to measure the association between prior authorization (PA) duration and other variables of interest. The Cox proportional hazards model was used to determine likelihood of approval. Further analysis included multivariable logistic regression to assess the influence of variables of interest on the initial decision from the insurance company and the effect of the PA on disease activity.</p><p><strong>Results: </strong>Of 52 PAs, 50% were initially denied. An initial denial decreased the likelihood of approval by 98% (HR, 0.02; 95% CI, <0.01-0.09; <i>P</i> < .001). The odds of denial for oral medications (odds ratio [OR], 4.91; 95% CI, 1.33-21.52; <i>P</i> = .02) and infusions (OR, 8.35; 95% CI, 1.10-88.77; <i>P</i> = .05) were significantly higher than for injections. Medicaid had higher odds of denial compared with commercial insurance (OR, 4.51; 95% CI, 1.13-22.01; <i>P</i> = .04). An initial denial by insurance significantly increased the likelihood of disease activity (OR, 6.18; 95% CI, 1.33-44.86; <i>P</i> = .03).</p><p><strong>Conclusions: </strong>Insurance restrictions delay necessary treatments, increase the likelihood of disease activity, and rarely change the approved disease-modifying therapy. Reducing PAs may lead to improved outcomes for patients with MS.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"17-21"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779716/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46401296","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":"Effects of Physical Therapy and Dalfampridine on Function and Quality of Life in Nonambulatory Individuals With Multiple Sclerosis: A Randomized Controlled Trial","authors":"Lacey E Bromley, Bianca Weinstock-Guttman","doi":"10.7224/1537-2073.2023-063","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-063","url":null,"abstract":"\u0000 \u0000 \u0000 Decreases in mobility, quality of life (QOL) and cognition are commonly seen in people with multiple sclerosis (MS). Physical therapy (PT) and exercise have been shown to improve many symptoms in ambulatory individuals with MS, however, evidence in nonambulatory people with MS is lacking. Dalfampridine is a US Food and Drug Administration-approved medication for MS that treats impaired ambulation by enhancing nerve conduction. To our knowledge, no study has examined the combined effect of PT and dalfampridine and very few studies have examined dalfampridine's effect on function in individuals with more progressive disease. The purpose of this study was to examine the effectiveness of PT combined with dalfampridine or a placebo on function, QOL, and cognition in nonambulatory individuals with MS. In addition, we explored the benefits of PT in all participants to increase the extremely limited research in this population.\u0000 \u0000 \u0000 \u0000 Adults with MS were randomly assigned to receive dalfampridine (n = 13) or placebo (n = 14) for 12 weeks in conjunction with PT treatment 2 times a week. Function, QOL, and cognition were assessed at baseline, 6 weeks, and 12 weeks.\u0000 \u0000 \u0000 \u0000 There was a significant time × group interaction for the Multiple Sclerosis Quality of Life-54 favoring the placebo group. Both groups significantly improved on the 9-Hole Peg Test (left arm only), sitting lateral reach (right), transferring from wheelchair to mat, and repeated sit to stand.\u0000 \u0000 \u0000 \u0000 The addition of dalfampridine to physical therapy did not improve function, QOL, or cognitive processing speed. Importantly, this study demonstrated an overall benefit in function and QOL with physical therapy 2 times a week for 12 weeks for nonambulatory individuals with MS.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"80 3","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138998725","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":"High-Intensity Gait Training in an Individual With Neuromyelitis Optica and Research Recommendations for Individuals With Multiple Sclerosis","authors":"Rebecca Phelan, Kirsten Potter","doi":"10.7224/1537-2073.2023-035","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-035","url":null,"abstract":"\u0000 \u0000 \u0000 Neuromyelitis optica (NMO), similar to multiple sclerosis (MS), is an autoimmune disorder affecting the central nervous system. In people with central nervous system diagnoses, high-intensity gait training (HIGT) can support neuroplasticity, improving functional mobility. While low- to moderate-intensity exercise is beneficial in improving outcomes in individuals with NMO and MS, the impact of HIGT has not been thoroughly explored. This case study explores the safety and efficacy of HIGT in an individual with NMO.\u0000 \u0000 \u0000 \u0000 A 43-year-old man with NMO participated in a HIGT program utilizing the least amount of body weight support necessary to achieve a target heart rate of 60% to 80% of heart rate reserve or a Borg Rating of Perceived Exertion score of 15 to 17 during an in-patient rehabilitation stay. Interventions incorporated stair training, gait variances, and virtual reality.\u0000 \u0000 \u0000 \u0000 The patient successfully completed a 90-minute training session 4 to 7 times per week for 6 weeks following a HIGT regimen for 40% to 60% of each session. Meaningful gains in bed mobility, transfers, and gait allowed for a discharge to his home.\u0000 \u0000 \u0000 \u0000 This case suggests that HIGT in patients with NMO can be safe and effective in improving functional mobility. Due to the similarities between NMO and MS, this case provides a framework to assist clinicians in developing a HIGT plan of care for individuals with MS. Additional research is needed to clarify HIGT parameters, including intensity and duration, to improve functional mobility in individuals with MS.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"32 5","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138603794","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}