International journal of MS care最新文献

{"title":"Letter From the Editor.","authors":"Francois Bethoux","doi":"10.7224/1537-2073-25.3.v","DOIUrl":"10.7224/1537-2073-25.3.v","url":null,"abstract":"conundrum","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 3","pages":"v"},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10211355/pdf/i1537-2073-25-3-v.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9900236","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":"Relevance and Impact of Social Support on Quality of Life for Persons With Multiple Sclerosis.","authors":"María Bárbara Eizaguirre,&nbsp;Cecilia Yastremiz,&nbsp;Natalia Ciufia,&nbsp;María Sol Roman,&nbsp;Ricardo Alonso,&nbsp;Berenice Anabel Silva,&nbsp;Orlando Garcea,&nbsp;Fernando Cáceres,&nbsp;Sandra Vanotti","doi":"10.7224/1537-2073.2022-012","DOIUrl":"10.7224/1537-2073.2022-012","url":null,"abstract":"<p><strong>Background: </strong>Social support is crucial for persons with multiple sclerosis (MS). We sought to analyze differences in perceived social support in persons with MS vs controls; to study associations between perceived social support, clinical measures, and health-related quality of life (HRQOL) variables in persons with MS; and to establish a predictive value of perceived social support for HRQOL.</p><p><strong>Methods: </strong>We studied 151 persons with MS (mean ± SD: age, 42.01 ± 9.97 years; educational level, 14.05 ± 3.26 years) and 89 controls (mean ± SD: age, 41.46 ± 12.25 years; educational level, 14.60 ± 2.44 years) using the Medical Outcomes Study Social Support Survey (MOS-SSS), Expanded Disability Status Scale, Fatigue Severity Scale, Beck Depression Inventory, and Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire. Parametric and nonparametric statistical methods were used accordingly; <i>P</i> < .05.</p><p><strong>Results: </strong>Persons with MS exhibited lower scores on the MOS-SSS's overall support index (<i>t</i>₂₃₈ = -1.98, <i>P</i> = .04) and on each functional subscale (<i>t</i>₂₃₈ = -2.56 to -2.19, <i>P</i> < .05). No significant differences were found on the social support structural component (<i>P</i> > .05). Significant associations were observed between social support and depression and fatigue (<i>r</i> = -0.20 to -0.29, <i>P</i> < .05) and with MusiQoL dimensions (<i>r</i> = -0.18 to 0.48, <i>P</i> < .05). Multiple regression analysis showed all 4 tested models contributed to HRQOL-explained variance (41%-47%). The emotional/informational support model explained the most HRQOL variability (47%).</p><p><strong>Conclusions: </strong>Persons with MS perceived reduced social support, presenting lower functional scores than controls. Perceived social support proved to be a predictor of HRQOL. These findings should be considered during therapeutic treatment.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 3","pages":"99-103"},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10211354/pdf/i1537-2073-25-3-99.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9900239","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":"Psychometric Properties and Clinical Utility of the Distress Thermometer in Caregivers of Persons With Multiple Sclerosis.","authors":"Sara L Douglas,&nbsp;Matthew Plow","doi":"10.7224/1537-2073.2022-024","DOIUrl":"10.7224/1537-2073.2022-024","url":null,"abstract":"<p><strong>Background: </strong>Caregivers of persons with multiple sclerosis (MS) report high levels of distress. The National Comprehensive Cancer Network Distress Thermometer (DT) is used extensively with patients with cancer and their caregivers but has not been tested in nononcology caregivers. The purpose of this study was to examine the psychometric properties and clinical utility of the barometer portion of the DT in caregivers of persons with MS.</p><p><strong>Methods: </strong>A secondary analysis was performed of data from a randomized trial comparing the effectiveness of 2 interventions aimed at reducing psychological outcomes associated with caregiving. The DT and the 4-item Patient-Reported Outcomes Measurement Information System Anxiety and Depression scales, which were administered at baseline, were used for all analyses. Construct validity (known groups) and convergent validity (interscale correlations) were evaluated. Receiver operating characteristic curve analysis was used to evaluate clinical diagnostic test evaluation.</p><p><strong>Results: </strong>The DT had good construct validity supported by strong correlations for known-groups analyses and good convergent validity (<i>r</i> = 0.70-0.72). The DT also demonstrated good discrimination for anxiety (area under the curve [AUC] = 0.83) and depression (AUC = 0.80). The optimal screening cut point on the DT was 4 for anxiety and 5 for depression.</p><p><strong>Conclusions: </strong>The barometer portion of the DT demonstrates good psychometric properties and clinical utility in caregivers of persons with MS. This is the first examination of the DT in MS care partners.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 3","pages":"93-98"},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10211350/pdf/i1537-2073-25-3-93.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9545683","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":"Effect of Nordic Walking Training on Walking Capacity and Quality of Life for People With Multiple Sclerosis.","authors":"Carme Santoyo-Medina,&nbsp;Montserrat Janer Cabo,&nbsp;Dolors Fàbregas Xaudaró,&nbsp;Gaizka Loyola Sanmillan,&nbsp;Samuel Sanchez Pous,&nbsp;Ingrid Galan Cartaña,&nbsp;Edwin Roger Meza Murillo,&nbsp;Jaume Sastre-Garriga,&nbsp;Xavier Montalban","doi":"10.7224/1537-2073.2021-070","DOIUrl":"10.7224/1537-2073.2021-070","url":null,"abstract":"BACKGROUND\u0000Although there is emerging evidence that aerobic training improves walking capacity in persons with multiple sclerosis (MS), data are limited about the potential benefits of Nordic walking (NW) for this population. This study evaluates the effectiveness of outdoor NW training on walking capacity and related quality of life for people with MS compared with cycloergometer and treadmill aerobic training.\u0000\u0000\u0000METHODS\u0000A single-blinded (evaluator), randomized, 2-arm clinical trial was designed.\u0000\u0000\u0000RESULTS\u0000A total of 57 patients with MS (38 women and 19 men; mean ± SD age, 51.98 ± 9.93 years; mean ± SD disease duration, 14.75 ± 8.52 years) were included. Both therapeutic modalities improved walking distance as measured by the 6-Minute Walk Test after the training period. The NW group showed significant improvement on the physical and emotional subscales of the Multiple Sclerosis Quality of Life-54 compared with the cycloergometer and treadmill group, which showed improvement only on the physical subscale.\u0000\u0000\u0000CONCLUSIONS\u0000Both training modalities proved to be of equal benefit in improving the walking capacity of people with MS, but outdoor NW training also seems to have a beneficial effect on the emotional component of health-related quality of life.","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 3","pages":"118-123"},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10211352/pdf/i1537-2073-25-3-118.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9900241","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":"Standardized Systematic Description of Provision of Care for Multiple Sclerosis at a Local Level: A Demonstration Study.","authors":"Hossein Tabatabaei-Jafari,&nbsp;Nasser Bagheri,&nbsp;Christian Lueck,&nbsp;Mary Anne Furst,&nbsp;Jose A Salinas-Perez,&nbsp;Luis Salvador-Carulla","doi":"10.7224/1537-2073.2022-014","DOIUrl":"10.7224/1537-2073.2022-014","url":null,"abstract":"<p><strong>Background: </strong>This study evaluates and describes the pattern of services provided for people living with multiple sclerosis (MS) in a local area as a starting point for a more global assessment.</p><p><strong>Methods: </strong>A health care ecosystem approach has been followed using an internationally standardized service classification instrument-the Description and Evaluation of Services and DirectoriEs for Long Term Care (DESDE-LTC)-to identify and describe all services providing care to people with MS in the Australian Capital Territory, Australia. Available services were classified according to the target population into those specifically dedicated to people living with MS and those providing general neurologic services, both public and private, and across both social and health sectors.</p><p><strong>Results: </strong>A limited range of services was available. There were no local facilities providing or coordinating multidisciplinary integrated care specific to people with MS. Subspecialty services specific to MS were limited in number (6 of the 28 services), and use of specialist services provided in neighboring states was frequently reported. Overall, very few services were provided outside the core health sector (4%).</p><p><strong>Conclusions: </strong>The provision of care to people living with MS in the Australian Capital Territory is fragmented and relies heavily on generic neurology services in the public and private sectors. More widespread use of the DESDE-LTC as a standardized method of service classification in MS will facilitate comparison with other local areas, allow monitoring of changes over time, and permit comparison with services provided for other health conditions (eg, dementia, mental disorders).</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 3","pages":"124-130"},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10211356/pdf/i1537-2073-25-3-124.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9900242","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 Engaging in Complementary and Alternative Medicine Among Highly Educated Women With Multiple Sclerosis.","authors":"Caroline Storr Krogh,&nbsp;Lasse Skovgard,&nbsp;Marie Lynning,&nbsp;Josephine Lyngh Steenberg","doi":"10.7224/1537-2073.2021-133","DOIUrl":"10.7224/1537-2073.2021-133","url":null,"abstract":"<p><strong>Background: </strong>Previous research has shown that users of complementary and alternative medicine (CAM) among persons with multiple sclerosis are more likely to be women and to have a higher level of education compared with nonusers. This qualitative study was performed to explore the motivations linked to CAM use among highly educated women with multiple sclerosis.</p><p><strong>Methods: </strong>The study was based on a phenomenological approach, and 8 semistructured, in-depth qualitative interviews were performed. Data were transcribed verbatim and analyzed through meaning condensation and identification of recurring themes.</p><p><strong>Results: </strong>Regarding the informants' motivations for CAM use, 3 main themes emerged: (1) Self-reliance is essential in disease management, (2) conventional health care lacks a holistic approach, and (3) personal experience is the primary guide.</p><p><strong>Conclusions: </strong>The interviewees wanted approaches to health care that supported their desire to actively participate in the management of their disease. They were critical of the conventional health care system, and they emphasized the importance of letting their own personal experiences, as well as those of others, guide their decisions.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 3","pages":"104-110"},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10211353/pdf/i1537-2073-25-3-104.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9916435","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":"2023 Annual Meeting of the CMSC","authors":"","doi":"10.7224/1537-2073-25.s1.1","DOIUrl":"https://doi.org/10.7224/1537-2073-25.s1.1","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46391453","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Examining the Influence of Cognition on the Relationship Between Backward Walking and Falls in Persons With Multiple Sclerosis.","authors":"Erin M Edwards,&nbsp;Ana M Daugherty,&nbsp;Nora E Fritz","doi":"10.7224/1537-2073.2021-130","DOIUrl":"10.7224/1537-2073.2021-130","url":null,"abstract":"<p><strong>Background: </strong>Multiple sclerosis (MS) causes motor, cognitive, and sensory impairments that result in injurious falls. Current fall risk measures in MS (ie, forward walking [FW] speed and balance) are limited in their sensitivity. Backward walking (BW) velocity is a sensitive marker of fall risk and correlates with information processing speed (IPS) and visuospatial memory (VSM) in persons with MS. Backward walking is a complex motor task that requires increased cognitive demands, which are negatively affected by MS; however, whether cognitive function modifies the sensitivity of BW as a fall risk assessment in MS remains unknown. This study examines the influence of cognition on the relationship between BW and falls in persons with MS.</p><p><strong>Methods: </strong>Measures of BW, FW, IPS, VSM, and retrospective falls were collected. Hierarchical regression tested moderation and included an interaction term predicting number of falls. Covariates for all analyses included age and disease severity.</p><p><strong>Results: </strong>Thirty-eight persons with MS participated. Although BW, IPS, and covariates significantly predicted the number of falls (<i>R</i> ² = 0.301; <i>P</i> = .016), there was no evidence of moderation. Backward walking, VSM, and covariates also significantly predicted number of falls (<i>R</i> ² = 0.332, <i>P</i> = .008), but there was no evidence of moderation. The FW models generated comparable results.</p><p><strong>Conclusions: </strong>The relationship between BW velocity and falls was not conditional on IPS or VSM in this sample. Larger-scale studies examining additional cognitive domains commonly affected by MS and prospective falls are needed to characterize neurobiological processes relevant to BW and its clinical application in the assessment of fall risk.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 2","pages":"51-55"},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10010112/pdf/i1537-2073-25-2-51.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9123751","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"LETTER FROM THE EDITOR.","authors":"M Alissa Willis","doi":"10.7224/1537-2073-25.2.iv","DOIUrl":"10.7224/1537-2073-25.2.iv","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 2","pages":"iv"},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10010114/pdf/i1537-2073-25-2-iv.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9123746","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":"Outcomes and Health Care Service Use in Adults 50 Years or Older With and Without Multiple Sclerosis: A 6-Year Observational Analysis.","authors":"Leorah Freeman,&nbsp;Ashlea Lucas,&nbsp;Jia Zhou,&nbsp;Brooke Hayward,&nbsp;Mallory Gough,&nbsp;Terrie Livingston","doi":"10.7224/1537-2073.2021-124","DOIUrl":"10.7224/1537-2073.2021-124","url":null,"abstract":"<p><strong>Background: </strong>Multiple sclerosis (MS) typically presents in young adulthood. Recent data show the highest prevalence of MS in people aged 55 to 64 years; however, there are limited studies of this population.</p><p><strong>Methods: </strong>Administrative US claims data from IBM-Truven MarketScan commercial and Medicare databases (2011-2017) were analyzed. People with MS 50 years or older were assigned to the aging MS cohort (n = 10,746). The matched controls were people 50 years or older without MS (n = 10,746). Multivariable models compared outcomes between groups.</p><p><strong>Results: </strong>Infections were more frequent in the aging MS cohort vs matched controls (61% vs 45%; <i>P</i> < .0001); urinary tract, acute upper respiratory tract, and herpes zoster were the most frequent infection types. Malignancy rates were 20% for both groups (<i>P</i> = .8167); skin, breast, and prostate malignancies were the most frequent types. Skilled nursing facilities (aging MS cohort, 12%; matched controls, 3%; <i>P</i> < .0001) and MRI (aging MS cohort, 87%; matched controls, 37%; <i>P</i> < .0001) were used more frequently in the aging MS cohort; brain and spine were the most frequent types of MRI in the aging MS cohort. Time to first cane/walker or wheelchair use was shorter in the aging MS cohort (cane/walker use: HR, 2.1; 95% CI, 1.9-2.3; <i>P</i> < .0001; wheelchair use: HR, 6.9; 95% CI, 6.0-8.1; <i>P</i> < .0001).</p><p><strong>Conclusions: </strong>In people 50 years or older, measures typically associated with worse health primarily resulted from having MS rather than being a consequence of aging alone.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 2","pages":"56-62"},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10010108/pdf/i1537-2073-25-2-56.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9129368","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}