International journal of MS care最新文献

{"title":"Multiple Sclerosis Fatigue Self-Management: Strategies and Influencing Factors 5 Years After a Multimodal Intervention.","authors":"ShienPei C Silverman, Bishan Yang, Felicia Mata-Greve, Nikita Sajeev, Sophie Samiee, Julia Norton, Cinda L Hugos","doi":"10.7224/1537-2073.2024-012","DOIUrl":"10.7224/1537-2073.2024-012","url":null,"abstract":"<p><strong>Background: </strong>Fatigue: Take Control (FTC) is a multimodal self-management program. Results of a previous clinical trial showed its effectiveness at improving fatigue related to multiple sclerosis (MS). The objectives of this study were to use the very long-term data from the FTC study to understand fatigue management strategies used 5 years after enrollment, identify facilitators and barriers to utilizing strategies, and explore the potential relationships between the strategy used and fatigue outcomes.</p><p><strong>Methods: </strong>This study adopted a cross-sectional survey design. A subset of the original FTC clinical trial participants was invited to complete the Modified Fatigue Impact Scale for fatigue severity measurement and a 17-item questionnaire about their fatigue management strategies 5 years after enrollment. Descriptive statistics and content analysis were used to analyze quantitative and qualitative data using the COM-B (capability, opportunity, motivation-behavior) model for behavior change as a framework.</p><p><strong>Results: </strong>Planning daily activities and prioritizing tasks were the fatigue management strategies most often reported. Facilitators to utilizing management strategies included access to enabling devices, paid professional help, companions, and maintaining a positive attitude. Barriers to implementing strategies included high cost, the presence of other health problems, and temperature sensitivity. Internal focused strategies showed a trend toward reducing fatigue impact when controlled for typology group assignment.</p><p><strong>Conclusions: </strong>Future work may focus on promoting low-cost strategies to help people with MS manage fatigue. Internal factors (eg, motivation) play an important role in influencing the application of MS fatigue self-management strategies. Future clinical trials with larger sample sizes that assess the applicability of the COM-B model are warranted.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q4","pages":"363-369"},"PeriodicalIF":0.0,"publicationDate":"2024-12-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11667032/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142885716","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":"Ballroom Dancing for People With Multiple Sclerosis: Perceptions of the Experience.","authors":"Linda B Piacentine, Alice F Yan, Alexander V Ng","doi":"10.7224/1537-2073.2023-061","DOIUrl":"10.7224/1537-2073.2023-061","url":null,"abstract":"<p><strong>Background: </strong>Multiple sclerosis (MS) encompasses various symptoms, including fatigue, pain, spasticity, motor dysfunction, postural instability, sexual and bladder dysfunction, and cognitive impairment. Despite the documented benefits of exercise for alleviating MS symptoms, adherence to physical activity guidelines often is low, resulting in sedentary lifestyles among people with MS. This qualitative study explores the experiences of individuals with MS who participated in a ballroom dance intervention.</p><p><strong>Methods: </strong>Thirteen community-dwelling individuals with MS participated in five 1-hour focus group sessions as part of a larger ballroom dance study. The Framework Method, utilizing NVivo qualitative analysis software, was applied to verbatim transcripts.</p><p><strong>Results: </strong>Four themes emerged. (1) Physical and psychological benefits: Ballroom dance improved perceived symptoms, including strength, endurance, coordination, and balance, as well as reduced fatigue and alleviated depression. (2) Positive social support leading to enjoyment/fun: Ballroom dance fostered positive support and served as an enjoyable activity, including for couples. (3) Improved confidence: The dance intervention instilled confidence in physical abilities and emotional well-being. (4) Physical and social facilitation of activity: Ballroom dancing facilitated activity because partners were able to assist when fatigue or balance issues occurred, and the intervention provided social acceptability.</p><p><strong>Conclusions: </strong>Recreational ballroom or social dance was well tolerated, and individuals with MS and researchers perceived it as beneficial as it led to positive physical and psychological changes. This partnered social dance intervention provided an emotionally and physically supportive environment, improved confidence, and facilitated activity. This study contributes to the understanding of the potential of recreational ballroom dancing to promote physical activity and well-being among people who are living with MS.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q4","pages":"355-362"},"PeriodicalIF":0.0,"publicationDate":"2024-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11647066/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142835460","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":"Acceptability and Feasibility of the English Version of Elevida, a Self-Guided Online Fatigue Intervention for People With Multiple Sclerosis.","authors":"Jo Lane, Carmel Poyser, Yixuan Zhao, Robyn M Lucas, Björn Meyer, Christoph Heesen, Nicolas Cherbuin, Anne Brüstle, Susy Macqueen, Alice Richardson, Christian Lueck, Stefan M Gold","doi":"10.7224/1537-2073.2023-048","DOIUrl":"10.7224/1537-2073.2023-048","url":null,"abstract":"<p><strong>Background: </strong>Fatigue is common in multiple sclerosis (MS); it significantly impairs quality of life, and treatment options are limited. A randomized controlled trial of Elevida, a self-guided, online German fatigue intervention, showed significant benefit. We tested an English version of Elevida with people with MS in Australia.</p><p><strong>Methods: </strong>Participants were volunteers with MS who self-reported at least mild fatigue (≥ 43 on the Fatigue Scale for Motor and Cognitive Functions scale), some mobility (Expanded Disability Status Scale < 8), and no or mild cognitive difficulties (≤ 32 on the Multiple Sclerosis Neuropsychological Questionnaire). Participants completed the 9-week English Elevida program, commenting on and rating its acceptability. The Chalder Fatigue Scale was completed at baseline, end-of-program, and 2 months later. We undertook qualitative (thematic analysis) and quantitative (before/after differences, tested using paired <i>t</i> test) analyses.</p><p><strong>Results: </strong>Thirty-eight people with MS expressed an interest in the study; 26 were eligible; 20 began the study. Fifteen participants (75%) completed the program (mean [SD]: 58.9 [10.5] years of age, 67% women, 9 with relapsing MS, 6 with progressive MS). Over 90% of completing participants rated acceptability as good or very good, and approximately 70% found the program helpful. Three themes were identified: Positive or negative comments on program features, incorrect assumptions in program content, and personal experiences and reflections. Significant improvement (<i>P</i> < .01) in fatigue scores from baseline to program completion was maintained 2 months after program completion.</p><p><strong>Conclusions: </strong>Elevida was acceptable and effective for MS-related fatigue. Identified themes will guide further development of the program to satisfy users' sense of autonomy, competence, and relatedness.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q4","pages":"347-354"},"PeriodicalIF":0.0,"publicationDate":"2024-12-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11628539/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142806798","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":"Consultative, Proactive Physical Therapy in Early Multiple Sclerosis.","authors":"Monica Hendricksen, Jake Boyer, Miriam Rafferty, Kristen Hohl, Edith L Graham, Roumen Balabanov, Dominique Kinnett-Hopkins","doi":"10.7224/1537-2073.2023-058","DOIUrl":"10.7224/1537-2073.2023-058","url":null,"abstract":"<p><strong>Background: </strong>Exercise training may be the most effective nonpharmacological symptomatic treatment for patients with multiple sclerosis (MS). Physical therapy (PT) can facilitate increased exercise through education, individualized exercise routines, goal setting, and supportive resources. However, traditional PT focuses on function restoration rather than proactive measures to prevent the advancement of morbidity. We present the application of a proactive physical therapy (PAPT) approach for individuals with MS.</p><p><strong>Methods: </strong>Neurologists referred patients to PT shortly after their MS diagnosis. Patients completed a shared decision-making-based evaluation of their current functional level, received education on exercise guidelines and goal-setting support, and established an exercise routine of an appropriate intensity. The patient and physical therapist communicated via email and telephone at 1 and 3 months. Assessments included physical function, Fatigue Severity Scale (FSS), and self-reported exercise at 6 months.</p><p><strong>Results: </strong>Three patients were referred directly to PAPT, and 1 transitioned from restorative PT. At 6 months, 3 patients reported regular aerobic, strengthening, and flexibility participation that met or exceeded established exercise recommendations. Two of 3 patients demonstrated clinically meaningful changes in functional outcome measures (eg, 10-meter Walk Test), a third patient remained stable in all functional outcome measures. Three patients reported significant improvements on the FSS at 6 months. The fourth patient did not complete the 6-month follow-up due to pregnancy complications but reported meeting guidelines at 3 months.</p><p><strong>Conclusions: </strong>A PAPT model of care is feasible and effective for patients who have been newly diagnosed with MS. With minimal PT visits, patients met established exercise guidelines and maintained or improved physical function.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q4","pages":"341-346"},"PeriodicalIF":0.0,"publicationDate":"2024-12-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11612631/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142768846","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":"Impact of Fingolimod Discontinuation Strategy on Recurrence of Disease Activity in Individuals With Multiple Sclerosis.","authors":"Nevin M Shalaby, Rufaidah Rushdi, Raed Alroughany, Samar Ahmed, Nahla Merghany, Hatem Shehata, Jasem Al-Hashel, Mona Nada, Adel Gad, Amr Hassan, Nirmeen Kishk, Sherif Hamdy, Maged Abdelnaseer, Mohamed Hegazy, Sandra Ahmed, Abdel-Rahman Abdel-Aal, Haidy El Shebawy","doi":"10.7224/1537-2073.2023-050","DOIUrl":"10.7224/1537-2073.2023-050","url":null,"abstract":"<p><strong>Background: </strong>For individuals with multiple sclerosis (MS), treatment interruption can result in relapse/recurrence of the disease activity. Currently, there are no consensus guidelines about whether an abrupt stop with a short washout period or gradual tapering is better for fingolimod (Gilenya) cessation. We investigated the impact of the fingolimod discontinuation strategy on the recurrence of disease activity and the rebound occurrence of symptoms during washout.</p><p><strong>Methods: </strong>This was a retrospective, observational, multicenter study of individuals with MS in Egypt and Kuwait. The charts of patients on fingolimod therapy were screened to collect data on the impact of drug cessation strategies on disease activity and relapse occurrence. Disease relapse after cessation was defined as a relapse that occurred in the previous 12 months despite using a first-line treatment option or 2 relapses in the previous 12 months.</p><p><strong>Results: </strong>In a cohort of 100 patients, 58 had an abrupt cessation and 42 had a gradual tapering. Compared with abrupt cessation, gradual tapering was associated with a significantly lower rate of disease relapse (4.8% vs 81%, respectively; <i>P</i> = .001). Abrupt cessation also resulted in increased MRI findings of new lesions (24.1%; <i>P</i> = .29), enhancing lesions (32.8%; <i>P</i> = .5), and enlarging lesions (6.9%; <i>P</i> = .59); however, none of the MRI findings were significant. Other risk factors showed no significant association with disease relapse after fingolimod cessation.</p><p><strong>Conclusions: </strong>Gradual fingolimod tapering is highly recommended to decrease the risk of rebound and severe disease reactivation. A prolonged washout should be avoided for lymphocyte recovery.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q4","pages":"329-340"},"PeriodicalIF":0.0,"publicationDate":"2024-11-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11588075/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142716077","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":"Expanding the Connection Between Cognition and Illness Intrusiveness in Multiple Sclerosis.","authors":"Aprille Gangi, Sarah A Raskin, Aaron P Turner, Frederick W Foley, Lindsay O Neto, Elizabeth S Gromisch","doi":"10.7224/1537-2073.2023-099","DOIUrl":"10.7224/1537-2073.2023-099","url":null,"abstract":"<p><strong>Background: </strong>Multiple sclerosis (MS) disease factors, such as cognitive impairment, can cause disruptions in meaningful activities, also known as illness intrusiveness. Although the association between specific objective measures of cognition and illness intrusiveness has been documented in MS, the contributions of individuals' perceptions of their cognition or whether any psychological factors can buffer the relationship have yet to be explored. This study aimed to (1) simultaneously examine objective processing speed and subjective cognition as disease factors contributing to illness intrusiveness and (2) explore whether resilience moderates the relationship between cognition and illness intrusiveness.</p><p><strong>Methods: </strong>Participants (N = 112) were individuals with MS who completed the Illness Intrusiveness Ratings Scale (IIRS), Symbol Digit Modalities Test (SDMT), Perceived Deficits Questionnaire (PDQ), and MS Resiliency Scale (MSRS) as part of a larger cross-sectional study. A hierarchical linear regression was done, followed by individual moderation analyses.</p><p><strong>Results: </strong>Both the PDQ (<i>b</i> = .43, <i>P</i> = .001) and SDMT (<i>b</i> = -4.17, <i>P</i> = .003) were independent predictors of the IIRS. There was no evidence of moderation in either model, although the MSRS independently contributed to the IIRS.</p><p><strong>Conclusions: </strong>Among individuals with MS, objective processing speed and subjective cognition were independently associated with illness intrusiveness, highlighting the importance of considering both cognitive performance and perceptions as contributing factors to life disruptions.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q4","pages":"321-328"},"PeriodicalIF":0.0,"publicationDate":"2024-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11584378/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142709637","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":"Cognitive Function in Frail Older Adults With Multiple Sclerosis: An Exploratory Study Using Secondary Data Analysis.","authors":"Emerson Sebastião, Vitor A A A Siqueira, Jemimah O Bakare, Mahgolzahra Kamari, Robert W Motl","doi":"10.7224/1537-2073.2023-085","DOIUrl":"10.7224/1537-2073.2023-085","url":null,"abstract":"<p><strong>Background: </strong>Studies addressing frailty in the context of multiple sclerosis (MS) are emergent. This study explores cognitive function in older adults with MS as a function of frailty status.</p><p><strong>Methods: </strong>This cross-sectional study used baseline data from a feasibility randomized controlled trial of a home-based exercise program for older adults with MS. Frailty was verified using performance scores from the Short Physical Performance Battery (SPPB) and cut points available in the literature. Cognitive function was assessed using the Brief International Cognitive Assessments for Multiple Sclerosis (BICAMS). Data were analyzed using inferential statistics adopting a significance of <i>P</i> < .05.</p><p><strong>Results: </strong>Data from 26 older adults with MS (≥60 years) were analyzed. The majority of the participants were women, and over 85% of the sample had the relapsing-remitting form of MS. Participants reported a mean of more than 20 years of disease and a moderate level of disability (Expanded Disability Status Scale score = 4). Nearly 58% of the sample was classified as frail based on SPPB scores. Univariate analysis demonstrated that frail older adults performed significantly worse (<i>P</i> < .05) on all 3 BICAMS tests. However, after controlling for age and disability level, only visuospatial memory remained significant between frailty groups (<i>P</i> = .043).</p><p><strong>Conclusions: </strong>Our findings suggest reduced cognitive function in frail older adults with MS compared with their nonfrail counterparts. This highlights the need to develop interventions to improve cognitive function and to reverse frailty for older adults with MS.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q4","pages":"315-320"},"PeriodicalIF":0.0,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11584377/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142709636","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":"Exploring the Complexity of Falls in People With Multiple Sclerosis: A Qualitative Study.","authors":"Anna H Wäneskog, Anette S Forsberg, Ylva E Nilsagård","doi":"10.7224/1537-2073.2024-020","DOIUrl":"10.7224/1537-2073.2024-020","url":null,"abstract":"<p><strong>Background: </strong>The complexity of falls in people with multiple sclerosis (MS) needs further exploration to develop strategies to reduce fall risk. The aim of this study is to explore and describe factors contributing to falls and the complexity of fall situations in people with MS.</p><p><strong>Methods: </strong>This longitudinal study used individual interviews shortly after prospective reporting of falls. Manifest analysis was used to describe frequency, place, and time of falls. The International Classification of Functioning, Disability and Health (ICF) was used for deductive content analyses to describe fall-inducing factors. Participants were adults with MS (N = 33) who had experienced falls during the past year and who did not use walking aids.</p><p><strong>Results: </strong>The 25 participants who fell during the study period reported 94 falls, mainly during the day (61%) and outdoors (56%). Fall situations were complex, with interaction between triggering and circumstantial factors related to all domains in the ICF, the impact of preceding factors, and fluctuating symptoms.</p><p><strong>Conclusions: </strong>The complexity of fall situations can be more clearly understood and managed by considering the preceding activities and circumstances in addition to describing single risk factors. This may facilitate discussions of fall risk between health care professionals and people with MS. Individualized fall risk assessments and interventions that strengthen self-management are recommended.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q4","pages":"308-314"},"PeriodicalIF":0.0,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11535117/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142582901","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 for Hospital Admission in Individuals With Multiple Sclerosis.","authors":"Danelvis Paredes, Elijah Lackey, Suma Shah","doi":"10.7224/1537-2073.2023-064","DOIUrl":"10.7224/1537-2073.2023-064","url":null,"abstract":"<p><strong>Background: </strong>Health care utilization is higher in individuals with multiple sclerosis (MS) than in the general population. However, there are limited data on the reasons for their hospital admissions. Our primary objective is to analyze the reasons for the hospitalization of individuals with MS with the goal of identifying preventable causes.</p><p><strong>Methods: </strong>We conducted a retrospective analysis of a cohort of adults with a confirmed diagnosis of MS admitted to Duke University Hospital between January 2018 and January 2020. This yielded a cohort of 210 individuals. Data were analyzed using descriptive statistics.</p><p><strong>Results: </strong>The most common reason for admission was urinary tract infection (UTI; 10.3%). The average length of stay was 6.1 days for the individuals with MS vs 5.5 days for the general population. The 30-day readmission rates were 14.9% and 15.5%, respectively. A significant number of admitted patients were not on any disease-modifying therapy (DMT), and no difference in median age was identified between those with a DMT vs those without.</p><p><strong>Conclusions: </strong>Length of stay and readmission rates were similar to those of the general population in this contemporary cohort. Given the prevalence of bladder dysfunction in MS, it is not surprising that a UTI was the most common reason for admission. Actively addressing management of and techniques for bladder dysfunction may decrease the admission rate for individuals with MS. Though we now have more treatment options for MS, many individuals with the highest health care utilization are not on a DMT. Future research is needed to identify the factors that can be addressed to support these patients and reduce preventable hospitalizations.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q4","pages":"302-307"},"PeriodicalIF":0.0,"publicationDate":"2024-10-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11513505/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142521878","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":"Wearables for the Bladder: Stakeholder Perspectives on Moving Multiple Sclerosis Bladder Dysfunction Interventions Into the 21st Century.","authors":"Valerie J Block, Leah McIntyre Née Wylie, Nikki Sisodia, Michelle E Van Kuiken, Anne M Suskind, Riley Bove","doi":"10.7224/1537-2073.2023-108","DOIUrl":"10.7224/1537-2073.2023-108","url":null,"abstract":"<p><strong>Background: </strong>Bladder dysfunction (BD) is common in people with multiple sclerosis (MS) and can reduce participation in daily life. Detecting BD early allows for effective prevention-focused treatments such as pelvic floor physical therapy. Pairing neurotechnology with patient-reported outcomes to remotely measure BD could significantly improve monitoring and treatment of BD. Therefore, we describe the process and findings of stakeholder engagement from a human-centered design process to assemble a wearables for the bladder (WeB) kit.</p><p><strong>Methods: </strong>Four people with MS with varying BD severity, and 5 MS clinical/research experts had 4 virtual meetings. Commercially available bladder tools were graded for ability to evaluate, monitor, or treat BD. The Health Information Technology Usability Evaluation Scale (utility, usability, feasibility) was used for evaluation. Scoring was performed individually and as a group.</p><p><strong>Results: </strong>Of the 11 devices, 5 obtained mean scores of greater than 6 of 10 for likability, usability, and device utility. The 2 highest scoring (9/10) devices were selected for the pilot. One device measures bladder urine levels, reporting the number/frequency of voids/leaks; the other guides pelvic floor exercises by pairing games on an app with biofeedback from intravaginal sensors. We uncovered critical differences in experts' and patients' appreciation of the tools, and the collaborative engagement led to substantial revisions of initial tool scores.</p><p><strong>Conclusions: </strong>This process underscores the critical role of stakeholder engagement in the selection of digital tools, especially in sensitive domains like pelvic function. Ongoing clinical validation of the selected tools will yield a validated, user-friendly WeB kit that is able to fill gaps in our ability to evaluate BD treatments in people with MS, ultimately reducing the impact of BD on quality of life.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"26 Q4","pages":"290-301"},"PeriodicalIF":0.0,"publicationDate":"2024-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11491565/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142464757","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}