Pub Date : 2024-08-26eCollection Date: 2024-05-01DOI: 10.7224/1537-2073.2023-018
Tiffany Malone, John A Schafer, Lacey Sayre, Brian Hutchinson
Background: The John A. Schafer, MD Multiple Sclerosis Achievement Center (MSAC) conducts wellness programs that include exercise, cognitive stimulation, education, emotional support, and socialization for people with multiple sclerosis and their care partners. Patient-reported outcomes (PROs) are collected annually. Four-year outcomes encompass the COVID-19 pandemic when some of these programs were offered virtually.
Methods: Beginning in 2017, baseline data were collected for 110 MSAC day wellness program participants through PRO measures. Of those 110, 52 completed PROs annually through 2021. Outcome measures included the Multiple Sclerosis Impact Scale (MSIS-29); Multiple Sclerosis Self-Efficacy Scale (MSSE-10); Godin Leisure-Time Exercise Questionnaire (GLTEQ); and the Neurology Quality of Life domains of Anxiety, Depression, Emotional and Behavioral Dysregulation, Positive Affect, Cognition, Ability to Participate in and Satisfaction with Social Roles and Activities, and Satisfaction with Social Roles and Activities. Analysis using t tests compared baseline with 4-year data. A separate analysis compared outcomes collected in January 2020 and January 2021.
Results: Analysis of 4-year data demonstrated statistically significant improvement in MSIS-29 and GLTEQ. Statistically significant improvements noted at years 2 and 3 in the Ability to Participate in Social Roles and Activities were no longer significant at year 4. Other notable changes included significant decreases in MSSE at year 4 when compared with baseline and year 3.
Conclusions: Individuals who participated in a weekly, structured day wellness program showed improvements in self-reported disease impact and physical activity at year 4 vs baseline. Decreases in self-efficacy and social domains were seen, corresponding with disruptions caused by the COVID-19 pandemic. Further analysis is needed to understand the effects of the pandemic on program participants.
{"title":"Outcomes of a Day Wellness Program for People With Multiple Sclerosis Before and During the COVID-19 Pandemic.","authors":"Tiffany Malone, John A Schafer, Lacey Sayre, Brian Hutchinson","doi":"10.7224/1537-2073.2023-018","DOIUrl":"10.7224/1537-2073.2023-018","url":null,"abstract":"<p><strong>Background: </strong>The John A. Schafer, MD Multiple Sclerosis Achievement Center (MSAC) conducts wellness programs that include exercise, cognitive stimulation, education, emotional support, and socialization for people with multiple sclerosis and their care partners. Patient-reported outcomes (PROs) are collected annually. Four-year outcomes encompass the COVID-19 pandemic when some of these programs were offered virtually.</p><p><strong>Methods: </strong>Beginning in 2017, baseline data were collected for 110 MSAC day wellness program participants through PRO measures. Of those 110, 52 completed PROs annually through 2021. Outcome measures included the Multiple Sclerosis Impact Scale (MSIS-29); Multiple Sclerosis Self-Efficacy Scale (MSSE-10); Godin Leisure-Time Exercise Questionnaire (GLTEQ); and the Neurology Quality of Life domains of Anxiety, Depression, Emotional and Behavioral Dysregulation, Positive Affect, Cognition, Ability to Participate in and Satisfaction with Social Roles and Activities, and Satisfaction with Social Roles and Activities. Analysis using t tests compared baseline with 4-year data. A separate analysis compared outcomes collected in January 2020 and January 2021.</p><p><strong>Results: </strong>Analysis of 4-year data demonstrated statistically significant improvement in MSIS-29 and GLTEQ. Statistically significant improvements noted at years 2 and 3 in the Ability to Participate in Social Roles and Activities were no longer significant at year 4. Other notable changes included significant decreases in MSSE at year 4 when compared with baseline and year 3.</p><p><strong>Conclusions: </strong>Individuals who participated in a weekly, structured day wellness program showed improvements in self-reported disease impact and physical activity at year 4 vs baseline. Decreases in self-efficacy and social domains were seen, corresponding with disruptions caused by the COVID-19 pandemic. Further analysis is needed to understand the effects of the pandemic on program participants.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"233-238"},"PeriodicalIF":0.0,"publicationDate":"2024-08-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11350406/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142107203","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-19eCollection Date: 2024-05-01DOI: 10.7224/1537-2073.2022-071
Philipp Trénel, Finn Boesen, Anders Guldhammer Skjerbæk, Thor Petersen, Peter Vestergaard Rasmussen, Michael Nørgaard
Background: The study of the effectiveness of multidisciplinary rehabilitation (MDR) and how the symptoms and needs of individuals with multiple sclerosis (MS) interplay with the diversity of MDR interventions is still a conundrum, often referred to as a black box.
Methods: We conducted a partial crossover randomized controlled trial with follow-ups at 1 (discharge), 6, and 12 months. Based on their rehabilitation goals, each patient was categorized into 1 of 5 main focus areas (MFAs) prior to admission: Resilience, Cognitive Function, Energy, Physical Function, and Personal Needs. The Functional Assessment of Multiple Sclerosis (FAMS) instrument scores were the primary outcome.
Results: MFA groups varied in age (P = .036), MS type (P = .002), Expanded Disability Status Scale score (P < .001), time since diagnosis (P = .002), and FAMS at baseline (P < .001), as well as in composition and quantity of MDR services. At discharge, significant FAMS improvements were found in all 5 MFA groups (FAMS change > 10.4, P < .05), but the affected subdimensions and persistence of improvements varied among MFA groups. At the 6-month follow-up, estimates of controlled differences in FAMS were 9.9 (P =.001), 5.6 (P = .196), 8.5 (P = .008), -1.4 (P = .548), and 17.9 (P = .012) for the Resilience, Cognitive Function, Energy, Physical Function, and Personal Needs groups, respectively.
Conclusions: This study demonstrated that inpatient MDR improves functioning and health-related quality of life in people with MS; the type, degree, and persistence of the benefits are associated with a patient's main focus area of rehabilitation, which signifies the importance of the goal-setting process in MDR.
{"title":"Shedding Light on the Black Box of Rehabilitation: Differential Short- and Long-Term Effects of Multidisciplinary Multiple Sclerosis Rehabilitation.","authors":"Philipp Trénel, Finn Boesen, Anders Guldhammer Skjerbæk, Thor Petersen, Peter Vestergaard Rasmussen, Michael Nørgaard","doi":"10.7224/1537-2073.2022-071","DOIUrl":"10.7224/1537-2073.2022-071","url":null,"abstract":"<p><strong>Background: </strong>The study of the effectiveness of multidisciplinary rehabilitation (MDR) and how the symptoms and needs of individuals with multiple sclerosis (MS) interplay with the diversity of MDR interventions is still a conundrum, often referred to as a black box.</p><p><strong>Methods: </strong>We conducted a partial crossover randomized controlled trial with follow-ups at 1 (discharge), 6, and 12 months. Based on their rehabilitation goals, each patient was categorized into 1 of 5 main focus areas (MFAs) prior to admission: Resilience, Cognitive Function, Energy, Physical Function, and Personal Needs. The Functional Assessment of Multiple Sclerosis (FAMS) instrument scores were the primary outcome.</p><p><strong>Results: </strong>MFA groups varied in age (<i>P</i> = .036), MS type (<i>P</i> = .002), Expanded Disability Status Scale score (<i>P</i> < .001), time since diagnosis (<i>P</i> = .002), and FAMS at baseline (<i>P</i> < .001), as well as in composition and quantity of MDR services. At discharge, significant FAMS improvements were found in all 5 MFA groups (FAMS change > 10.4, <i>P</i> < .05), but the affected subdimensions and persistence of improvements varied among MFA groups. At the 6-month follow-up, estimates of controlled differences in FAMS were 9.9 (<i>P</i> =.001), 5.6 (<i>P</i> = .196), 8.5 (<i>P</i> = .008), -1.4 (<i>P</i> = .548), and 17.9 (<i>P</i> = .012) for the Resilience, Cognitive Function, Energy, Physical Function, and Personal Needs groups, respectively.</p><p><strong>Conclusions: </strong>This study demonstrated that inpatient MDR improves functioning and health-related quality of life in people with MS; the type, degree, and persistence of the benefits are associated with a patient's main focus area of rehabilitation, which signifies the importance of the goal-setting process in MDR.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"224-232"},"PeriodicalIF":0.0,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11333915/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142008776","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-12eCollection Date: 2024-05-01DOI: 10.7224/1537-2073.2023-081
Elliot J Gann, Mark M Mañago, Diane D Allen, Elie Celnikier, Valerie J Block
Background: Foot drop in people with multiple sclerosis (MS) commonly leads to decreased mobility and quality of life (QOL). Functional electrical stimulation (FES) of the peroneal nerve can improve the gait of people with foot drop, yet various barriers restrict widespread use. The purpose of this case series was to examine the feasibility of a telerehabilitation-monitored FES device and report changes in functional mobility and QOL in people with moderate MS-related disability.
Methods: FES use was progressed over 8 weeks via 3 telerehabilitation sessions. Feasibility of telerehabilitation was assessed by percentage of telerehabilitation visits completed and participant-reported satisfaction. At baseline and study completion, functional mobility with and without FES were assessed by the Timed 25-Foot Walk (T25FW), Timed Up and Go (TUG), and 2-Minute Walk Test (2MWT), Multiple Sclerosis Impact Scale (MSIS-29), and the 12-item Multiple Sclerosis Walking Scale (MSWS-12). Fatigue was assessed via the Modified Fatigue Impact Scale (MFIS) before and after the intervention.
Results: Eleven participants (mean age = 50.4 years [SD 10.8]; 2 males) completed the study. All (33/33) telerehabilitation visits were completed and participants attained high levels of satisfaction with no adverse events. At 8 weeks, compared to baseline, there were clinically meaningful improvements on the T25FW, 2MWT, and TUG for 45%, 55%, and 82% of participants, respectively. Clinically meaningful improvements on the MSIS-29 and MSWS-12 were also recorded for 64% and 36% of participants, respectively.
Conclusions: Telerehabilitation was safe and feasible for FES intervention, and improvements in functional mobility and QOL were observed. Telerehabilitation to monitor FES may improve access and reduce patient burden; therefore, studying its efficacy is warranted.
{"title":"Feasibility of Telerehabilitation-Monitored Functional Electrical Stimulation on Walking and Quality of Life in People With Multiple Sclerosis: A Case Series.","authors":"Elliot J Gann, Mark M Mañago, Diane D Allen, Elie Celnikier, Valerie J Block","doi":"10.7224/1537-2073.2023-081","DOIUrl":"10.7224/1537-2073.2023-081","url":null,"abstract":"<p><strong>Background: </strong>Foot drop in people with multiple sclerosis (MS) commonly leads to decreased mobility and quality of life (QOL). Functional electrical stimulation (FES) of the peroneal nerve can improve the gait of people with foot drop, yet various barriers restrict widespread use. The purpose of this case series was to examine the feasibility of a telerehabilitation-monitored FES device and report changes in functional mobility and QOL in people with moderate MS-related disability.</p><p><strong>Methods: </strong>FES use was progressed over 8 weeks via 3 telerehabilitation sessions. Feasibility of telerehabilitation was assessed by percentage of telerehabilitation visits completed and participant-reported satisfaction. At baseline and study completion, functional mobility with and without FES were assessed by the Timed 25-Foot Walk (T25FW), Timed Up and Go (TUG), and 2-Minute Walk Test (2MWT), Multiple Sclerosis Impact Scale (MSIS-29), and the 12-item Multiple Sclerosis Walking Scale (MSWS-12). Fatigue was assessed via the Modified Fatigue Impact Scale (MFIS) before and after the intervention.</p><p><strong>Results: </strong>Eleven participants (mean age = 50.4 years [SD 10.8]; 2 males) completed the study. All (33/33) telerehabilitation visits were completed and participants attained high levels of satisfaction with no adverse events. At 8 weeks, compared to baseline, there were clinically meaningful improvements on the T25FW, 2MWT, and TUG for 45%, 55%, and 82% of participants, respectively. Clinically meaningful improvements on the MSIS-29 and MSWS-12 were also recorded for 64% and 36% of participants, respectively.</p><p><strong>Conclusions: </strong>Telerehabilitation was safe and feasible for FES intervention, and improvements in functional mobility and QOL were observed. Telerehabilitation to monitor FES may improve access and reduce patient burden; therefore, studying its efficacy is warranted.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"214-223"},"PeriodicalIF":0.0,"publicationDate":"2024-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11317766/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141971066","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-05eCollection Date: 2024-05-01DOI: 10.7224/1537-2073.2023-070
Francesco Pastore, Miguel Angel Robles Sanchez, Catharina Maria Harrison, Konstantinos Ntinoulis, Sabine Staller, Tatsi Theano, Santosh B Shirol
Timely diagnosis of multiple sclerosis (MS) is a challenge due to factors such as prompt identification of symptoms and consequent delays in hospital visits and treatment initiation. In part to address this challenge, an expert scientific advisory panel of clinical nurse practitioners (CNPs) from different European nations was convened by Viatris on October 25, 2022, in Amsterdam, the Netherlands. This meeting was an interactive discussion to understand the role of clinical nurse practitioners in MS management. The objectives were to (1) understand the current delays in MS diagnosis from the perspective of expert CNPs; (2) determine the role of the CNP in MS management; and (3) identify the opportunities to improve accessibility, foster collaboration among stakeholders, and promote initiatives to educate people with MS. The recommendations of the panel underline the multidimensional role of CNPs in the management of MS at all stages. Health care stakeholders need to work together to achieve better access to treatment regimens and facilitate outcomes in the management of MS through shared decision-making and follow-ups. Further exploration of the role of CNPs in the management of MS, as well as recommendations for early diagnosis, will help both general practitioners and specialists better manage MS care.
{"title":"The Clinical Nurse Practitioner's Essential Role in Early Diagnosis and Management of Multiple Sclerosis in Europe: A Consensus Report.","authors":"Francesco Pastore, Miguel Angel Robles Sanchez, Catharina Maria Harrison, Konstantinos Ntinoulis, Sabine Staller, Tatsi Theano, Santosh B Shirol","doi":"10.7224/1537-2073.2023-070","DOIUrl":"10.7224/1537-2073.2023-070","url":null,"abstract":"<p><p>Timely diagnosis of multiple sclerosis (MS) is a challenge due to factors such as prompt identification of symptoms and consequent delays in hospital visits and treatment initiation. In part to address this challenge, an expert scientific advisory panel of clinical nurse practitioners (CNPs) from different European nations was convened by Viatris on October 25, 2022, in Amsterdam, the Netherlands. This meeting was an interactive discussion to understand the role of clinical nurse practitioners in MS management. The objectives were to (1) understand the current delays in MS diagnosis from the perspective of expert CNPs; (2) determine the role of the CNP in MS management; and (3) identify the opportunities to improve accessibility, foster collaboration among stakeholders, and promote initiatives to educate people with MS. The recommendations of the panel underline the multidimensional role of CNPs in the management of MS at all stages. Health care stakeholders need to work together to achieve better access to treatment regimens and facilitate outcomes in the management of MS through shared decision-making and follow-ups. Further exploration of the role of CNPs in the management of MS, as well as recommendations for early diagnosis, will help both general practitioners and specialists better manage MS care.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"208-213"},"PeriodicalIF":0.0,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11298979/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141893385","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-08-02eCollection Date: 2024-05-01DOI: 10.7224/1537-2073.2023-006
Megan Weigel
{"title":"The Effect of the Response Shift Phenomenon on the Results of an Integrative Medicine Workshop Series.","authors":"Megan Weigel","doi":"10.7224/1537-2073.2023-006","DOIUrl":"10.7224/1537-2073.2023-006","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q3","pages":"207"},"PeriodicalIF":0.0,"publicationDate":"2024-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11298978/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141893386","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-01eCollection Date: 2024-05-01DOI: 10.7224/1537-2073.2023-084
Elissa M Dykes, Ghaida K Zaid, Surachat Ngorsuraches, William Meador
Background: Black people with multiple sclerosis (MS) have a worse disease course and higher rates of progression than White people with MS. Contributing factors to health disparities are understudied.
Methods: Data were collected retrospectively from the electronic medical records of 500 people with MS treated between 2013 and 2022 at a university comprehensive MS center in a southern state. Multiple logistic regression analyses were used to determine the associations between 2 disability outcomes (ie, low vs high Expanded Disability Status Score [EDSS] and ambulatory assistance [AMB] requirements) and age, sex, body mass index (BMI), MS type, disease duration, hypertension status, diabetes status, smoking status, adjusted gross income, and health insurance type for Black people with MS and White people with MS.
Results: Of the cohort, 39.2% identified as Black people with MS and the rest were White people with MS. Approximately 80% of White people with MS had relapsing MS (RMS) vs almost 90% of Black people with MS. Black people with MS were more likely to have a higher EDSS (OR 5.0, CI 3.0-8.4) and AMB (OR, 2.8; 95% CI, 1.6-4.8) than White people with MS. Among White people with MS, women (OR, 0.5; 95% CI, 0.3-0.9) and people with RMS (OR, 0.13; 95% CI 0.06-0.3) were less likely to have higher EDSS scores. Among Black people with MS, neither female sex nor RMS status was associated with a lower risk of having a higher EDSS (OR, 0.685; P = .43 and OR, 0.394; P = .29, respectively).
Conclusions: The disparity in disability outcomes between Black people with MS and White people with MS may be driven by more disabling courses for Black people with RMS and by female sex, though further study is needed to determine causes for this outcome.
{"title":"Descriptive Analysis of Health Disparities Between Black and White People With Multiple Sclerosis in the Deep South.","authors":"Elissa M Dykes, Ghaida K Zaid, Surachat Ngorsuraches, William Meador","doi":"10.7224/1537-2073.2023-084","DOIUrl":"10.7224/1537-2073.2023-084","url":null,"abstract":"<p><strong>Background: </strong>Black people with multiple sclerosis (MS) have a worse disease course and higher rates of progression than White people with MS. Contributing factors to health disparities are understudied.</p><p><strong>Methods: </strong>Data were collected retrospectively from the electronic medical records of 500 people with MS treated between 2013 and 2022 at a university comprehensive MS center in a southern state. Multiple logistic regression analyses were used to determine the associations between 2 disability outcomes (ie, low vs high Expanded Disability Status Score [EDSS] and ambulatory assistance [AMB] requirements) and age, sex, body mass index (BMI), MS type, disease duration, hypertension status, diabetes status, smoking status, adjusted gross income, and health insurance type for Black people with MS and White people with MS.</p><p><strong>Results: </strong>Of the cohort, 39.2% identified as Black people with MS and the rest were White people with MS. Approximately 80% of White people with MS had relapsing MS (RMS) vs almost 90% of Black people with MS. Black people with MS were more likely to have a higher EDSS (OR 5.0, CI 3.0-8.4) and AMB (OR, 2.8; 95% CI, 1.6-4.8) than White people with MS. Among White people with MS, women (OR, 0.5; 95% CI, 0.3-0.9) and people with RMS (OR, 0.13; 95% CI 0.06-0.3) were less likely to have higher EDSS scores. Among Black people with MS, neither female sex nor RMS status was associated with a lower risk of having a higher EDSS (OR, 0.685; <i>P</i> = .43 and OR, 0.394; <i>P</i> = .29, respectively).</p><p><strong>Conclusions: </strong>The disparity in disability outcomes between Black people with MS and White people with MS may be driven by more disabling courses for Black people with RMS and by female sex, though further study is needed to determine causes for this outcome.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 ","pages":"167-173"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11223039/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141534390","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-24eCollection Date: 2024-05-01DOI: 10.7224/1537-2073.2023-091
Patrick G Monaghan, Taylor N Takla, Alexis N Chargo, Erin M Edwards, Biaohua Yu, Emily Myers, Ana M Daugherty, Nora E Fritz
Background: People with multiple sclerosis (MS) experience mobility impairments that elevate fall risk, increasing the need to identify clinical measures that accurately predict falls. Backward walking (BW) better differentiates fallers from nonfallers in MS. However, no studies have reported the measurement properties of the backward walking Timed 25-Foot Walk (B-T25-FW) and BW metrics, like BW velocity. Additionally, it is unknown whether BW can predict future falls in MS or its link to activity levels. This study assessed the reliability and responsiveness of B-T25-FW and BW metrics, including BW velocity. It also examined whether BW could predict falls at 3 and 6 months and its association with activity levels.
Methods: During 2 separate visits, 23 people with MS completed the forward walking Timed 25-Foot Walk (F-T25-FW) and B-T25-FW, as well as forward walking and BW assessments in which spatiotemporal measures were recorded. Test-retest reliability was determined with intraclass correlation coefficients, and minimum detectable changes were calculated. Correlation analyses explored the relationship between BW velocity, B-T25-FW, prospective falls, and activity levels.
Results: B-T25-FW and BW velocity exhibited excellent test-retest reliability. Large effect sizes to interpret clinically meaningful change in the B-T25-FW and BW velocity were also found. Both metrics demonstrated modest negative correlations with falls at 3 and 6 months and correlated strongly with very active minutes at 3- and 6-months post study.
Conclusions: The B-T25-FW and BW velocity are effective and reliable in clinical use for evaluating functional mobility in people with MS, are sensitive enough to detect subtle changes, and may be a meaningful marker for tracking disease progression and treatment efficacy.
{"title":"Measurement Properties of Backward Walking and Its Sensitivity and Feasibility in Predicting Falls in People With Multiple Sclerosis.","authors":"Patrick G Monaghan, Taylor N Takla, Alexis N Chargo, Erin M Edwards, Biaohua Yu, Emily Myers, Ana M Daugherty, Nora E Fritz","doi":"10.7224/1537-2073.2023-091","DOIUrl":"10.7224/1537-2073.2023-091","url":null,"abstract":"<p><strong>Background: </strong>People with multiple sclerosis (MS) experience mobility impairments that elevate fall risk, increasing the need to identify clinical measures that accurately predict falls. Backward walking (BW) better differentiates fallers from nonfallers in MS. However, no studies have reported the measurement properties of the backward walking Timed 25-Foot Walk (B-T25-FW) and BW metrics, like BW velocity. Additionally, it is unknown whether BW can predict future falls in MS or its link to activity levels. This study assessed the reliability and responsiveness of B-T25-FW and BW metrics, including BW velocity. It also examined whether BW could predict falls at 3 and 6 months and its association with activity levels.</p><p><strong>Methods: </strong>During 2 separate visits, 23 people with MS completed the forward walking Timed 25-Foot Walk (F-T25-FW) and B-T25-FW, as well as forward walking and BW assessments in which spatiotemporal measures were recorded. Test-retest reliability was determined with intraclass correlation coefficients, and minimum detectable changes were calculated. Correlation analyses explored the relationship between BW velocity, B-T25-FW, prospective falls, and activity levels.</p><p><strong>Results: </strong>B-T25-FW and BW velocity exhibited excellent test-retest reliability. Large effect sizes to interpret clinically meaningful change in the B-T25-FW and BW velocity were also found. Both metrics demonstrated modest negative correlations with falls at 3 and 6 months and correlated strongly with very active minutes at 3- and 6-months post study.</p><p><strong>Conclusions: </strong>The B-T25-FW and BW velocity are effective and reliable in clinical use for evaluating functional mobility in people with MS, are sensitive enough to detect subtle changes, and may be a meaningful marker for tracking disease progression and treatment efficacy.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 ","pages":"155-166"},"PeriodicalIF":0.0,"publicationDate":"2024-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11195663/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141446177","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-05-01Epub Date: 2024-05-16DOI: 10.7224/1537-2073-26.3.iv
M Alissa Willis
{"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}
Pub Date : 2024-05-01DOI: 10.7224/1537-2073.2023-047
Sasha I. Winston-Khan, Brian C. Healy, Sydney B. Kehoe, Jonathan D. Zurawski, Tarun Singhal, Bonnie I. Glanz
ACTIVITY AVAILABLE ONLINE: To access the article and evaluation online, go to https://www.highmarksce.com/mscare. 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). 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. ACCREDITATION: 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. 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. 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. NURSES: The CMSC designates this enduring material for 1.0 contact hour of nursing continuing professional development (NCPD) (none in the area of pharmacology). PSYCHOLOGISTS: This activity is awarded 1.0 CE credits. 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. 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. 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
在线活动:要在线访问文章和评估,请访问 https://www.highmarksce.com/mscare。目标受众:本活动的目标受众是医生、高级临床医师、护理专业人员、心理学家和其他心理健康专业人员、社会工作者以及其他参与多发性硬化症 (MS) 患者管理的医疗保健提供者。学习目标认识到针对多发性硬化症患者的有效和直接干预策略尚未得到满足,这些策略应正确针对特定的成见类型。描述 3 种主要的成见类型,以便能够选择一种成见工具,使临床医生能够区分经历的、预期的和内化的成见。认证:为支持改善患者护理,多发性硬化症中心联盟(CMSC)和 Intellisphere, LLC 计划并实施了这项活动。多发性硬化症中心联盟由继续医学教育认证委员会 (ACCME)、药学教育认证委员会 (ACPE) 和美国护士资格认证中心 (ANCC) 联合认证,为医疗团队提供继续教育。本活动由医疗团队策划并为医疗团队服务,学员将获得 1.0 个跨专业继续教育 (IPCE) 学分,用于学习和改变。医生:CMSC 指定本期刊活动最多可获得 1.0 个 AMA PRA 1 类学分™。医生只能申请与其参与活动程度相称的学分。护士:CMSC 指定本持久材料可获得 1.0 个护理继续职业发展 (NCPD) 接触小时(无药理学领域)。心理学家:本活动授予 1.0 个 CE 学分。社会工作者:作为联合认证组织,CMSC获准提供社会工作委员会协会(Association of Social Work Boards, ASWB)批准的继续教育(Approved Continuing Education, ACE)项目的社会工作继续教育。该计划批准的是组织,而非个别课程。监管委员会是接受继续教育学分课程的最终权威机构。完成此课程的社会工作者可获得 1.0 个普通继续教育学分。披露:多发性硬化症中心联盟的政策是减少策划者、教师和其他可能影响本继续教育活动内容的人员披露的所有相关财务信息。对于本次活动,所有相关披露均已减少。国际多发性硬化症护理杂志》(IJMSC)主编、医学博士 Francois Bethoux 担任本次活动的策划医师。他未披露任何相关财务关系。IJMSC 副主编、医学博士 Alissa Mary Willis 未披露任何相关财务关系。作者 Sasha I. Winston-Kahn(理学士)披露了与阿德尔菲价值观(雇员)的财务关系。作者 Brian C. Healy(博士)、Jonathan D. Zurawski(医学博士)、Tarun Singhal(医学博士)、Sydney B. Kehoe(理学学士)和 Bonnie I. Glanz(博士)未披露任何相关财务关系。IJMSC、CMSC 和 Intellisphere, LLC 公司中能够影响内容的员工未披露任何相关财务关系。CMSC 继续教育主任、DNP、NP 劳里-斯卡德(Laurie Scudder)是本次活动的策划者和审核者。她未披露任何相关财务关系。参与方式:发布日期:发布日期:2024 年 5 月 1 日;学分有效期:2025 年 5 月 1 日:为获得 CE 学分,参与者必须(1)查看继续教育信息,包括学习目标和作者披露信息。(2)学习教育内容。(3)完成评估,评估结果可从 https://www.highmarksce.com/mscare 网站获取。成功完成评估后可获得学分证明。参加本活动不收取任何费用。披露无标签使用:本教育活动可能包含对未经 FDA 批准的药剂的已公布和/或研究用途的讨论。CMSC 和 Intellisphere, LLC 不建议在标示适应症之外使用任何药物。教育活动中表达的观点仅代表教员的意见,并不一定代表 CMSC 或 Intellisphere, LLC 的观点。免责声明:参与者有责任使用新获得的信息来提高患者的治疗效果和自身的专业发展。本活动中提供的信息无意作为患者管理的指南。
{"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}
Pub Date : 2024-03-11DOI: 10.7224/1537-2073.2023-060
M. Ouwerkerk, M. Rietberg, Meike M. W. van der Linden, Bernard M. J. Uitdehaag, Erwin E. H. van Wegen, Vincent de Groot
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. 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). 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). 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.
{"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}