Pub Date : 2023-11-01Epub Date: 2023-11-08DOI: 10.7224/1537-2073.2021-053
Camilla Holden, Peter Hewitt, Rachel Tams
Background: Multiple sclerosis (MS) is a chronic, progressive autoimmune inflammatory disorder. Its impact is felt not only by individuals but also by their families; however, little is known about the effect on their parents. This study of a cohort from the United Kingdom aimed to develop a conceptual understanding of the parental role and how it changes over time when an adult son or daughter has MS via firsthand accounts.
Methods: Twelve parents of adults with MS were recruited from a UK hospital providing outpatient services to people with MS and a branch of a national MS charity. A social constructivist grounded theory approach informed audio-recorded semistructured interviews and subsequent data analysis.
Results: In this sample, parents of adults with MS strove to limit the impact of MS on their son or daughter by undertaking practical caring activities and providing emotional support. The developed theoretical model illustrates how, in their efforts to meet this aim, parents experienced competing demands between prioritizing their child's needs and managing the effects on their life, between managing the emotional experience and protecting their child from the burden of their experience, and between an intensified instinct/desire to help while maintaining their child's independence.
Conclusions: Findings indicate that parents may be uniquely affected by their adult son or daughter having MS, advocating for their inclusion in research and clinical interventions addressing family adjustment to MS. Further research is needed to ascertain the generalizability of these findings in comparable samples and to determine the impact of sociodemographic and cultural variables on the observed phenomena.
{"title":"Striving to Limit the Impact: Parenting an Adult Child Who Has Multiple Sclerosis-A Grounded Theory Study.","authors":"Camilla Holden, Peter Hewitt, Rachel Tams","doi":"10.7224/1537-2073.2021-053","DOIUrl":"10.7224/1537-2073.2021-053","url":null,"abstract":"<p><strong>Background: </strong>Multiple sclerosis (MS) is a chronic, progressive autoimmune inflammatory disorder. Its impact is felt not only by individuals but also by their families; however, little is known about the effect on their parents. This study of a cohort from the United Kingdom aimed to develop a conceptual understanding of the parental role and how it changes over time when an adult son or daughter has MS via firsthand accounts.</p><p><strong>Methods: </strong>Twelve parents of adults with MS were recruited from a UK hospital providing outpatient services to people with MS and a branch of a national MS charity. A social constructivist grounded theory approach informed audio-recorded semistructured interviews and subsequent data analysis.</p><p><strong>Results: </strong>In this sample, parents of adults with MS strove to limit the impact of MS on their son or daughter by undertaking practical caring activities and providing emotional support. The developed theoretical model illustrates how, in their efforts to meet this aim, parents experienced competing demands between prioritizing their child's needs and managing the effects on their life, between managing the emotional experience and protecting their child from the burden of their experience, and between an intensified instinct/desire to help while maintaining their child's independence.</p><p><strong>Conclusions: </strong>Findings indicate that parents may be uniquely affected by their adult son or daughter having MS, advocating for their inclusion in research and clinical interventions addressing family adjustment to MS. Further research is needed to ascertain the generalizability of these findings in comparable samples and to determine the impact of sociodemographic and cultural variables on the observed phenomena.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"259-265"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10634593/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47517415","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}
Abstract Background: Migraines are a common comorbidity and source of disability in patients with chronic inflammatory diseases like multiple sclerosis (MS). Recently, therapeutic agents for episodic and chronic migraine known as calcitonin gene-related peptide (CGRP) inhibitors have shown to effectively control migraine attacks and improve quality of life in the general population. This study explored the use of these novel agents in individuals with comorbid MS. Methods: This was a retrospective, population-based cohort study at the University of South Florida’s neurology clinic; it evaluated individuals with both MS and migraine. Results: A total of 27 individuals with MS and chronic or episodic migraine who received treatment with a CGRP monoclonal antibody were identified. Of these, 63% reported a reduction in their migraine frequency of greater than 75%. Concurrent use of a disease modifying therapy (DMT) for MS occurred in 82% of patients, and in 37% of these, the DMT used was also a monoclonal antibody. Adverse effects from CGRP monoclonal antibodies were mild and occurred in only 11% of patients, and no patient experienced worsening of their MS symptoms during cotreatment over the duration of the study. Conclusions: Our study showed a significant reduction in migraine frequency and a favorable adverse event profile for individuals with comorbid MS who took CGRP monoclonal antibodies and experienced no worsening of MS symptoms. In individuals with MS, CGRP monoclonal antibodies seem to be a safe and effective therapy for episodic or chronic migraine.
{"title":"Use of Calcitonin Gene-Related Peptide Monoclonal Antibodies for the Treatment of Migraines in Individuals With Multiple Sclerosis","authors":"Ashley Mason, Lauren Fragapane, Zuleyma Toledo-Nieves, Natalie Moreo, Angela Aungst, Derrick Robertson, Janice Maldonado","doi":"10.7224/1537-2073.2023-013","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-013","url":null,"abstract":"Abstract Background: Migraines are a common comorbidity and source of disability in patients with chronic inflammatory diseases like multiple sclerosis (MS). Recently, therapeutic agents for episodic and chronic migraine known as calcitonin gene-related peptide (CGRP) inhibitors have shown to effectively control migraine attacks and improve quality of life in the general population. This study explored the use of these novel agents in individuals with comorbid MS. Methods: This was a retrospective, population-based cohort study at the University of South Florida’s neurology clinic; it evaluated individuals with both MS and migraine. Results: A total of 27 individuals with MS and chronic or episodic migraine who received treatment with a CGRP monoclonal antibody were identified. Of these, 63% reported a reduction in their migraine frequency of greater than 75%. Concurrent use of a disease modifying therapy (DMT) for MS occurred in 82% of patients, and in 37% of these, the DMT used was also a monoclonal antibody. Adverse effects from CGRP monoclonal antibodies were mild and occurred in only 11% of patients, and no patient experienced worsening of their MS symptoms during cotreatment over the duration of the study. Conclusions: Our study showed a significant reduction in migraine frequency and a favorable adverse event profile for individuals with comorbid MS who took CGRP monoclonal antibodies and experienced no worsening of MS symptoms. In individuals with MS, CGRP monoclonal antibodies seem to be a safe and effective therapy for episodic or chronic migraine.","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"19 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135616893","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}
Pub Date : 2023-10-20DOI: 10.7224/1537-2073.2023-010
Albert Aboseif, Moein Amin, James Bena, Kunio Nakamura, Gabrielle Macaron, Daniel Ontaneda
Abstract: Background: Cognitive impairment (CI) is common in multiple sclerosis (MS). Processing speed (PS) is often affected, making it an ideal target for monitoring CI. This study aims to evaluate the association between disease-modifying therapy (DMT) use and intensity and longitudinal changes in Processing Speed Test (PST) scores for individuals with MS. Methods: A retrospective analysis of individual PST scores at a single MS center was conducted. Individuals with 2 or more PST assessments were included. Scores on the PST were compared longitudinally between those who had been on a DMT for 2 or more years and those who had been off a DMT for 2 or more years and between those on high-efficacy DMTs and those on low-/moderate-efficacy DMTs. A linear regression model was approximated to evaluate the rate of cognitive change over time. A propensity score adjustment was conducted using a multivariable logistic regression. Results: The cohort was 642 individuals, 539 on DMT and 103 off DMT. Median age and disease duration was 49.7 (interquartile range [IQR] 42.4-57.9) and 16.6 years (IQR 9.3-23.0) in the DMT group, and 58.9 (IQR 52.2-65.3) and 20.0 years (IQR 14.1-31.4) in the non-DMT group. Both cohorts were predominantly female (75% DMT, 79.6% non-DMT), with a mean of 4 assessments (IQR 3-5), and an average monitoring duration of 1.9 years (1.2-2.4) in the DMT group, and 1.8 years (1.4-2.4) in the non-DMT group. After adjusting for multiple factors, DMT status and intensity were not found to be significant predictors of longitudinal PST change. Conclusions: Neither DMT status nor intensity were significant predictors of cognitive processing speed over a period of approximately 2 years. Future prospective multicenter trials are needed to further support these findings.
{"title":"Association Between Disease-Modifying Therapy and Information Processing Speed in Multiple Sclerosis","authors":"Albert Aboseif, Moein Amin, James Bena, Kunio Nakamura, Gabrielle Macaron, Daniel Ontaneda","doi":"10.7224/1537-2073.2023-010","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-010","url":null,"abstract":"Abstract: Background: Cognitive impairment (CI) is common in multiple sclerosis (MS). Processing speed (PS) is often affected, making it an ideal target for monitoring CI. This study aims to evaluate the association between disease-modifying therapy (DMT) use and intensity and longitudinal changes in Processing Speed Test (PST) scores for individuals with MS. Methods: A retrospective analysis of individual PST scores at a single MS center was conducted. Individuals with 2 or more PST assessments were included. Scores on the PST were compared longitudinally between those who had been on a DMT for 2 or more years and those who had been off a DMT for 2 or more years and between those on high-efficacy DMTs and those on low-/moderate-efficacy DMTs. A linear regression model was approximated to evaluate the rate of cognitive change over time. A propensity score adjustment was conducted using a multivariable logistic regression. Results: The cohort was 642 individuals, 539 on DMT and 103 off DMT. Median age and disease duration was 49.7 (interquartile range [IQR] 42.4-57.9) and 16.6 years (IQR 9.3-23.0) in the DMT group, and 58.9 (IQR 52.2-65.3) and 20.0 years (IQR 14.1-31.4) in the non-DMT group. Both cohorts were predominantly female (75% DMT, 79.6% non-DMT), with a mean of 4 assessments (IQR 3-5), and an average monitoring duration of 1.9 years (1.2-2.4) in the DMT group, and 1.8 years (1.4-2.4) in the non-DMT group. After adjusting for multiple factors, DMT status and intensity were not found to be significant predictors of longitudinal PST change. Conclusions: Neither DMT status nor intensity were significant predictors of cognitive processing speed over a period of approximately 2 years. Future prospective multicenter trials are needed to further support these findings.","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"82 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135618177","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}
Pub Date : 2023-09-29DOI: 10.7224/1537-2073.2023-037
Solange M. Saxby, Carlyn Haas, Farnoosh Shemirani, Tyler J. Titcomb, Patrick Ten Eyck, Linda M. Rubenstein, Karin F. Hoth, Linda G. Snetselaar, Terry L. Wahls
Abstract Background: Cognitive impairment is a common multiple sclerosis (MS)-related symptom that impacts quality of life (QOL). Diet interventions are shown to be beneficial in managing QOL, and the intake of essential fatty acids is linked with improved cognitive function. However, the effect of diets on serum fatty acid profiles and cognitive function is unknown. Methods: A previous randomized parallel-arm trial recruited participants with relapsing-remitting MS (N = 77). Study visits included 4 time points: run-in, baseline, 12 weeks, and 24 weeks. During the run-in phase, participants followed their usual diet and were then randomly assigned to either a modified paleolithic (Wahls) or a low saturated fat (Swank) diet at baseline. Assessments at study visits included cognitive function assessed by Symbol Digit Modalities Test-Oral (SDMT-O) and Perceived Deficits Questionnaire (PDQ), and serum fatty acids, including eicosapentaenoic (EPA), docosahexaenoic (DHA), and arachidonic (ARA) acids. Results: Both groups had significant improvements in all serum fatty acids (P < .01), except for ARA, as well as SDMT-O at 24-weeks (P < .05), total PDQ at 12- and 24-weeks (P < .01) compared to baseline values. The 12-week changes in omega-3 (EPA + DHA) index and EPA serum fatty acids were associated with SDMT-O changes (P ≤ .05); however, the changes in fatty acid levels did not mediate the effect of the diets on SDMT-O or PDQ (P > .05). Conclusions: Both diets led to improvements in serum fatty acid profiles and cognitive function, with associations between the 12-week omega-3 (EPA + DHA) index and EPA changes with SDMT-O.
{"title":"Association Between Improved Serum Fatty Acid Profiles and Cognitive Function During a Dietary Intervention Trial in Relapsing-Remitting Multiple Sclerosis","authors":"Solange M. Saxby, Carlyn Haas, Farnoosh Shemirani, Tyler J. Titcomb, Patrick Ten Eyck, Linda M. Rubenstein, Karin F. Hoth, Linda G. Snetselaar, Terry L. Wahls","doi":"10.7224/1537-2073.2023-037","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-037","url":null,"abstract":"Abstract Background: Cognitive impairment is a common multiple sclerosis (MS)-related symptom that impacts quality of life (QOL). Diet interventions are shown to be beneficial in managing QOL, and the intake of essential fatty acids is linked with improved cognitive function. However, the effect of diets on serum fatty acid profiles and cognitive function is unknown. Methods: A previous randomized parallel-arm trial recruited participants with relapsing-remitting MS (N = 77). Study visits included 4 time points: run-in, baseline, 12 weeks, and 24 weeks. During the run-in phase, participants followed their usual diet and were then randomly assigned to either a modified paleolithic (Wahls) or a low saturated fat (Swank) diet at baseline. Assessments at study visits included cognitive function assessed by Symbol Digit Modalities Test-Oral (SDMT-O) and Perceived Deficits Questionnaire (PDQ), and serum fatty acids, including eicosapentaenoic (EPA), docosahexaenoic (DHA), and arachidonic (ARA) acids. Results: Both groups had significant improvements in all serum fatty acids (P &lt; .01), except for ARA, as well as SDMT-O at 24-weeks (P &lt; .05), total PDQ at 12- and 24-weeks (P &lt; .01) compared to baseline values. The 12-week changes in omega-3 (EPA + DHA) index and EPA serum fatty acids were associated with SDMT-O changes (P ≤ .05); however, the changes in fatty acid levels did not mediate the effect of the diets on SDMT-O or PDQ (P &gt; .05). Conclusions: Both diets led to improvements in serum fatty acid profiles and cognitive function, with associations between the 12-week omega-3 (EPA + DHA) index and EPA changes with SDMT-O.","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"47 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135132141","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}
Pub Date : 2023-09-15DOI: 10.7224/1537-2073.2022-118
Munther Queisi, Hrayr Attarian, Victoria P. Cipriani, Saria Azzi, Olivia Kaczmarek, Barbara Bumstead, Marijean Buhse, Myassar Zarif, Daniel Golan, Jeffrey Wilken, Thomas Covey, Mark Gudesblatt
Abstract Background Poor sleep quality and sleep disorders are more prevalent in individuals with multiple sclerosis (MS) than in the general population. Poor sleep has been correlated with worse MS outcomes. Sleep efficiency (SE) is one of the most sensitive markers of sleep quality. There is very little written about SE and other polysomnography (PSG) parameters and MS measures. Methods This is a retrospective review of 280 consecutive individuals with MS evaluated by PSGs and other standardized MS measures over 13 years at a comprehensive MS center. In addition, the cohort was assessed with 2 fatigue scales, the Epworth Sleepiness Scale, and the Expanded Disability Status Scale. A comparison of means test (independent t test) and r, or correlation coefficient, were used. Results The PSG measures of SE and Total Sleep Time were significantly different between a group of individuals with MS with a disease duration of more than 5 years vs a group of individuals with MS with a disease duration less then or equal to 5 years. Prevalence of obstructive sleep apnea was 63%, higher than reported in the literature while the prevalence of moderate to severe obstructive sleep apnea was 33.4%, which was lower than reported. Conclusions Longer disease duration as well as worse disability correlate with sleep quality as measured by SE.
{"title":"Multiple Sclerosis, Fatigue, Expanded Disability Status Scale: A Cross-Sectional Exploration of Sleep Efficiency and Quantitative Sleep Parameters","authors":"Munther Queisi, Hrayr Attarian, Victoria P. Cipriani, Saria Azzi, Olivia Kaczmarek, Barbara Bumstead, Marijean Buhse, Myassar Zarif, Daniel Golan, Jeffrey Wilken, Thomas Covey, Mark Gudesblatt","doi":"10.7224/1537-2073.2022-118","DOIUrl":"https://doi.org/10.7224/1537-2073.2022-118","url":null,"abstract":"Abstract Background Poor sleep quality and sleep disorders are more prevalent in individuals with multiple sclerosis (MS) than in the general population. Poor sleep has been correlated with worse MS outcomes. Sleep efficiency (SE) is one of the most sensitive markers of sleep quality. There is very little written about SE and other polysomnography (PSG) parameters and MS measures. Methods This is a retrospective review of 280 consecutive individuals with MS evaluated by PSGs and other standardized MS measures over 13 years at a comprehensive MS center. In addition, the cohort was assessed with 2 fatigue scales, the Epworth Sleepiness Scale, and the Expanded Disability Status Scale. A comparison of means test (independent t test) and r, or correlation coefficient, were used. Results The PSG measures of SE and Total Sleep Time were significantly different between a group of individuals with MS with a disease duration of more than 5 years vs a group of individuals with MS with a disease duration less then or equal to 5 years. Prevalence of obstructive sleep apnea was 63%, higher than reported in the literature while the prevalence of moderate to severe obstructive sleep apnea was 33.4%, which was lower than reported. Conclusions Longer disease duration as well as worse disability correlate with sleep quality as measured by SE.","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"169 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135436956","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}
Pub Date : 2023-09-12DOI: 10.7224/1537-2073.2023-009
Sharon Stoll, Charisse Litchman, Noah Rubin, Larry Rubin, Timothy Vartanian
Abstract Background: The BeCare MS Link mobile app collects data as users complete different in-app assessments. It was specifically developed to evaluate the symptomatology and neurologic function of patients with multiple sclerosis (MS) and to become a digital equivalent of the Expanded Disability Status Scale (EDSS) and other standard clinical metrics of MS progression. Methods: Our research compared EDSS scores derived from the BeCare MS link app to EDSS scores derived from neurologist assessment for the same cohort of 35 patients diagnosed with MS. App-derived data was supplied to 4 different machine learning algorithms (MLAs) with an independent EDSS score prediction generated from each. These scores were compared to the clinically-derived EDSS score to assess the similarity of the scores and to determine an accuracy estimate for each MLA. The trial is registered on ClinicalTrials.gov as NCT04281160. Results: Out of the 4 MLAs employed, the most accurate MLA produced 19 EDSS score predictions that exactly matched the clinically-derived scores, 21 score predictions within 0.5 EDSS points, and 32 score predictions within 1 EDSS point. The remaining MLAs also provided a relatively high level of accuracy in predicting EDSS scores when compared to clinically-derived EDSS, with over 80% of scores predicted within 1 point and a mean squared error with a range of 1.05 to 1.37. Conclusions: The BeCare MS Link app can replicate the clinically-derived EDSS assessment of a patient with MS. The app may also offer a more complete evaluation of disability in patients with MS.
背景:BeCare MS Link移动应用程序在用户完成不同的应用内评估时收集数据。它专门用于评估多发性硬化症(MS)患者的症状学和神经功能，并成为扩展残疾状态量表(EDSS)和MS进展的其他标准临床指标的数字等等物。方法:我们的研究比较了来自BeCare MS链接应用程序的EDSS评分和来自神经学家评估的35名MS患者的EDSS评分，应用程序的数据提供给4种不同的机器学习算法(mla)，并从每种算法中生成独立的EDSS评分预测。将这些评分与临床得出的EDSS评分进行比较，以评估评分的相似性，并确定每个MLA的准确性估计。该试验在ClinicalTrials.gov上注册为NCT04281160。结果:在使用的4个MLA中，最准确的MLA产生了19个与临床衍生评分完全匹配的EDSS评分预测，21个评分预测在0.5 EDSS分内，32个评分预测在1 EDSS分内。与临床来源的EDSS相比，剩余的mla在预测EDSS评分方面也提供了相对较高的准确性，超过80%的分数预测在1分以内，均方误差在1.05至1.37之间。结论:BeCare MS Link应用程序可以复制MS患者临床衍生的EDSS评估，该应用程序还可以提供MS患者更完整的残疾评估。
{"title":"Validated, Quantitative, Machine Learning-Generated Neurologic Assessment of Multiple Sclerosis Using a Mobile Application","authors":"Sharon Stoll, Charisse Litchman, Noah Rubin, Larry Rubin, Timothy Vartanian","doi":"10.7224/1537-2073.2023-009","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-009","url":null,"abstract":"Abstract Background: The BeCare MS Link mobile app collects data as users complete different in-app assessments. It was specifically developed to evaluate the symptomatology and neurologic function of patients with multiple sclerosis (MS) and to become a digital equivalent of the Expanded Disability Status Scale (EDSS) and other standard clinical metrics of MS progression. Methods: Our research compared EDSS scores derived from the BeCare MS link app to EDSS scores derived from neurologist assessment for the same cohort of 35 patients diagnosed with MS. App-derived data was supplied to 4 different machine learning algorithms (MLAs) with an independent EDSS score prediction generated from each. These scores were compared to the clinically-derived EDSS score to assess the similarity of the scores and to determine an accuracy estimate for each MLA. The trial is registered on ClinicalTrials.gov as NCT04281160. Results: Out of the 4 MLAs employed, the most accurate MLA produced 19 EDSS score predictions that exactly matched the clinically-derived scores, 21 score predictions within 0.5 EDSS points, and 32 score predictions within 1 EDSS point. The remaining MLAs also provided a relatively high level of accuracy in predicting EDSS scores when compared to clinically-derived EDSS, with over 80% of scores predicted within 1 point and a mean squared error with a range of 1.05 to 1.37. Conclusions: The BeCare MS Link app can replicate the clinically-derived EDSS assessment of a patient with MS. The app may also offer a more complete evaluation of disability in patients with MS.","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"30 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135877989","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}
Abstract Background: Individuals with multiple sclerosis (MS) commonly experience fatigue, discomfort, sleep problems, anxiety, and reduced quality of life. Studies have shown that foot reflexology can help relieve these symptoms. The objective of this current study is to systematically review the effects of foot reflexology on patients with MS. Methods: We conducted a systematic review of published literature in many databases, including PubMed, EMBASE, and Cochrane Library, from January 1, 2000, to January 27, 2022. With language restrictions, we included randomized controlled trials of foot reflexology interventions for MS that had any clinical or psychological symptom measurements as outcomes. The Cochrane risk-of-bias tool was used to assess evidence quality. Two authors independently screened titles and abstracts. Potential eligible articles were retrieved for full-text review. A third author checked for excluded records. All discrepancies were resolved through a discussion among the 4 reviewing authors. Results: A total of 154 studies were identified; 9 studies with 545 MS patients were included in this review. The most frequently reported findings of foot reflexology intervention in individuals with MS were reductions in fatigue, pain, muscle spasms, stiffness, and psychological symptoms and improvement in bowel and bladder functions and quality of life Conclusions: The findings suggest that foot reflexology could be a safe and effective modality to reduce the physical, and psychological symptoms and also improve the quality of life for individuals with MS; however, well-designed, large-scale trials are required to confirm the effect.
{"title":"Effect of Foot Reflexology on Patients With Multiple Sclerosis: A Systematic Review of Current Evidence","authors":"Boopalan Deenadayalan, Vijayakumar Venugopal, Ravi Poornima, Vanamoorthy Mahesh Kannan, Anandhan Akila, Chidambaram Yogapriya, Kuppusamy Maheshkumar","doi":"10.7224/1537-2073.2022-093","DOIUrl":"https://doi.org/10.7224/1537-2073.2022-093","url":null,"abstract":"Abstract Background: Individuals with multiple sclerosis (MS) commonly experience fatigue, discomfort, sleep problems, anxiety, and reduced quality of life. Studies have shown that foot reflexology can help relieve these symptoms. The objective of this current study is to systematically review the effects of foot reflexology on patients with MS. Methods: We conducted a systematic review of published literature in many databases, including PubMed, EMBASE, and Cochrane Library, from January 1, 2000, to January 27, 2022. With language restrictions, we included randomized controlled trials of foot reflexology interventions for MS that had any clinical or psychological symptom measurements as outcomes. The Cochrane risk-of-bias tool was used to assess evidence quality. Two authors independently screened titles and abstracts. Potential eligible articles were retrieved for full-text review. A third author checked for excluded records. All discrepancies were resolved through a discussion among the 4 reviewing authors. Results: A total of 154 studies were identified; 9 studies with 545 MS patients were included in this review. The most frequently reported findings of foot reflexology intervention in individuals with MS were reductions in fatigue, pain, muscle spasms, stiffness, and psychological symptoms and improvement in bowel and bladder functions and quality of life Conclusions: The findings suggest that foot reflexology could be a safe and effective modality to reduce the physical, and psychological symptoms and also improve the quality of life for individuals with MS; however, well-designed, large-scale trials are required to confirm the effect.","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"21 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135877987","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}
Pub Date : 2023-09-01Epub Date: 2023-09-14DOI: 10.7224/1537-2073.2021-069
Caspar E P van Munster, Burggraaff Jessica, Saskia Steinheimer, Christian P Kamm, Marcus D'Souza, Manuela Diederich, Jonas Dorn, Lorcan Walsh, Frank Dahlke, Ludwig Kappos, Bernard M J Uitdehaag
Background: Upper extremity function (UEF) is often compromised in multiple sclerosis (MS), although its importance is regularly underrecognized relative to ambulation. We explored the concurrent presence of impairment in UEF and ambulation by examining various aspects of UEF across different levels of ambulation.
Methods: The cohort consisted of 247 patients with clinically definite MS or clinically isolated syndrome according to the revised 2010 McDonald criteria. The Nine-Hole Peg Test and the Expanded Disability Status Scale were used to stratify patients into clinically different subgroups. For UEF, cerebellar function (finger-to-nose test), pyramidal function (pronator drift test), and the ability to perform a task of activities of daily living (drinking-from-cup test) were examined. Patient-reported limitations of UEF in daily life were assessed using the Arm Function in Multiple Sclerosis Questionnaire.
Results: Patients in more severely impaired ambulation groups displayed poorer performance on all UEF measures. Although most patients had normal to mild (n = 147) or moderate (n = 46) ambulatory impairment, 87.7% exhibited some level of UEF impairment as defined using the Nine-Hole Peg Test. Most patients had mild UEF impairment (n = 174), accounting for the largest proportion in all ambulation groups (51.9%-77.8%).
Conclusions: A distinct pattern of impairment was found for ambulation and multiple aspects of UEF. Independent assessment of multiple aspects of disability may be helpful in treatment decision-making and could support the development of rehabilitation strategies that specifically target UEF impairment.
{"title":"Assessment of Multiple Aspects of Upper Extremity Function Independent From Ambulation in Patients With Multiple Sclerosis.","authors":"Caspar E P van Munster, Burggraaff Jessica, Saskia Steinheimer, Christian P Kamm, Marcus D'Souza, Manuela Diederich, Jonas Dorn, Lorcan Walsh, Frank Dahlke, Ludwig Kappos, Bernard M J Uitdehaag","doi":"10.7224/1537-2073.2021-069","DOIUrl":"10.7224/1537-2073.2021-069","url":null,"abstract":"<p><strong>Background: </strong>Upper extremity function (UEF) is often compromised in multiple sclerosis (MS), although its importance is regularly underrecognized relative to ambulation. We explored the concurrent presence of impairment in UEF and ambulation by examining various aspects of UEF across different levels of ambulation.</p><p><strong>Methods: </strong>The cohort consisted of 247 patients with clinically definite MS or clinically isolated syndrome according to the revised 2010 McDonald criteria. The Nine-Hole Peg Test and the Expanded Disability Status Scale were used to stratify patients into clinically different subgroups. For UEF, cerebellar function (finger-to-nose test), pyramidal function (pronator drift test), and the ability to perform a task of activities of daily living (drinking-from-cup test) were examined. Patient-reported limitations of UEF in daily life were assessed using the Arm Function in Multiple Sclerosis Questionnaire.</p><p><strong>Results: </strong>Patients in more severely impaired ambulation groups displayed poorer performance on all UEF measures. Although most patients had normal to mild (n = 147) or moderate (n = 46) ambulatory impairment, 87.7% exhibited some level of UEF impairment as defined using the Nine-Hole Peg Test. Most patients had mild UEF impairment (n = 174), accounting for the largest proportion in all ambulation groups (51.9%-77.8%).</p><p><strong>Conclusions: </strong>A distinct pattern of impairment was found for ambulation and multiple aspects of UEF. Independent assessment of multiple aspects of disability may be helpful in treatment decision-making and could support the development of rehabilitation strategies that specifically target UEF impairment.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 5","pages":"226-232"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10503816/pdf/i1537-2073-25-5-226.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10309636","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}
Pub Date : 2023-09-01DOI: 10.7224/1537-2073-25.5.iv
Francois Bethoux
FRANCOIS BETHOUX, MDEDITOR IN CHIEFCleveland ClinicCleveland, Ohio, USAA few months ago, I took up rock climbing. Those who know me well will find the thought amusing. I am not that young (although vanity prevents me from disclosing my age here), not that fit, laden with anxiety and self-doubt, and the idea of going to the gym generates a mild gastric discomfort in me (please keep this between us, as I ask all my patients to overcome their reluctance to exercise). Above all, I’m afraid of heights; I gave up cleaning my gutters, and standing on the observation platform of the Empire State Building inevitably results in panic symptoms even though I know perfectly well that there is no danger. Yet, aside from walking, climbing is now my preferred form of exercise. I can’t help but draw a parallel with the daily experiences of the individuals with multiple sclerosis (MS) who entrust their care to us (keeping in mind that I do not speak from personal experience dealing with this unrelenting disease). Some of my patients’ feelings when facing a regular workday seem akin to my first perception of climbing a 40-ft wall, but after a realistic evaluation of one’s abilities and of the risks involved, it is often a matter of mindset, strategy, and teamwork. I was enticed by my daughter to take on this activity, and we have made it a family experience, cheering for each other. I learned to trust the safety equipment and the belayer. I also learned to focus on the task at hand (forgetting my fears for a moment) and to believe at least a little in myself, even if my performance isn’t always up to my expectations. I will not belabor my point here, but I consider this experience an opportunity to gain more respect and admiration for the resourcefulness of my patients in facing the consequences of MS.Disease-modifying therapies (DMTs) continue to be the mainstay of MS management. Although the advent of infusion therapies has allowed a closer monitoring of treatment adherence, many DMTs continue to be self-managed. In this issue of the International Journal of MS Care, the scoping review by Ben-Zacharia and colleagues summarizes evidence on factors related to treatment adherence, whereas Neter and Miller propose a personalized program to improve adherence. Medication adverse effects are consistently identified as impacting DMT adherence: Bou Rjeily and colleagues report on 2 cases of serum sickness–like reaction after infusion of ocrelizumab.In their analysis of 30-day all-cause hospital readmissions in individuals with neuromyelitis optica spectrum disorder, Padarti and colleagues highlight comorbid conditions as predictors of readmission. Although not identified as a factor in this particular study, sleep disorders are a very common comorbidity in individuals with MS and other central neuroimmune disorders. Behavioral interventions have emerged as potentially effective in some sleep-related symptoms. The systematic review by Siengsukon and colleagues summarizes t
{"title":"LETTER FROM THE EDITOR","authors":"Francois Bethoux","doi":"10.7224/1537-2073-25.5.iv","DOIUrl":"https://doi.org/10.7224/1537-2073-25.5.iv","url":null,"abstract":"FRANCOIS BETHOUX, MDEDITOR IN CHIEFCleveland ClinicCleveland, Ohio, USAA few months ago, I took up rock climbing. Those who know me well will find the thought amusing. I am not that young (although vanity prevents me from disclosing my age here), not that fit, laden with anxiety and self-doubt, and the idea of going to the gym generates a mild gastric discomfort in me (please keep this between us, as I ask all my patients to overcome their reluctance to exercise). Above all, I’m afraid of heights; I gave up cleaning my gutters, and standing on the observation platform of the Empire State Building inevitably results in panic symptoms even though I know perfectly well that there is no danger. Yet, aside from walking, climbing is now my preferred form of exercise. I can’t help but draw a parallel with the daily experiences of the individuals with multiple sclerosis (MS) who entrust their care to us (keeping in mind that I do not speak from personal experience dealing with this unrelenting disease). Some of my patients’ feelings when facing a regular workday seem akin to my first perception of climbing a 40-ft wall, but after a realistic evaluation of one’s abilities and of the risks involved, it is often a matter of mindset, strategy, and teamwork. I was enticed by my daughter to take on this activity, and we have made it a family experience, cheering for each other. I learned to trust the safety equipment and the belayer. I also learned to focus on the task at hand (forgetting my fears for a moment) and to believe at least a little in myself, even if my performance isn’t always up to my expectations. I will not belabor my point here, but I consider this experience an opportunity to gain more respect and admiration for the resourcefulness of my patients in facing the consequences of MS.Disease-modifying therapies (DMTs) continue to be the mainstay of MS management. Although the advent of infusion therapies has allowed a closer monitoring of treatment adherence, many DMTs continue to be self-managed. In this issue of the International Journal of MS Care, the scoping review by Ben-Zacharia and colleagues summarizes evidence on factors related to treatment adherence, whereas Neter and Miller propose a personalized program to improve adherence. Medication adverse effects are consistently identified as impacting DMT adherence: Bou Rjeily and colleagues report on 2 cases of serum sickness–like reaction after infusion of ocrelizumab.In their analysis of 30-day all-cause hospital readmissions in individuals with neuromyelitis optica spectrum disorder, Padarti and colleagues highlight comorbid conditions as predictors of readmission. Although not identified as a factor in this particular study, sleep disorders are a very common comorbidity in individuals with MS and other central neuroimmune disorders. Behavioral interventions have emerged as potentially effective in some sleep-related symptoms. The systematic review by Siengsukon and colleagues summarizes t","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"60 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135348392","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}
Pub Date : 2023-09-01Epub Date: 2023-09-14DOI: 10.7224/1537-2073-25.5.vi
Francois Bethoux
{"title":"Letter From the Editor.","authors":"Francois Bethoux","doi":"10.7224/1537-2073-25.5.vi","DOIUrl":"10.7224/1537-2073-25.5.vi","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 5","pages":"vi"},"PeriodicalIF":0.0,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10503819/pdf/i1537-2073-25-5-vi.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10635159","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}
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