International journal of MS care最新文献

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The Impact of Insurance Restrictions in Newly Diagnosed Individuals With Multiple Sclerosis. 保险限制对新诊断为多发性硬化症患者的影响
International journal of MS care Pub Date : 2024-01-01 Epub Date: 2024-01-05 DOI: 10.7224/1537-2073.2022-069
Ryan Mizell
{"title":"The Impact of Insurance Restrictions in Newly Diagnosed Individuals With Multiple Sclerosis.","authors":"Ryan Mizell","doi":"10.7224/1537-2073.2022-069","DOIUrl":"10.7224/1537-2073.2022-069","url":null,"abstract":"<p><strong>Background: </strong>The medical system in the United States has been riddled with insurance restrictions used by insurance companies to limit health care costs. The effects of insurance restrictions on patients receiving disease-modifying therapies for multiple sclerosis (MS) have not been specifically studied.</p><p><strong>Methods: </strong>A retrospective cross-sectional study of 52 individuals recently diagnosed with MS at a tertiary neurology clinic was conducted to measure the association between prior authorization (PA) duration and other variables of interest. The Cox proportional hazards model was used to determine likelihood of approval. Further analysis included multivariable logistic regression to assess the influence of variables of interest on the initial decision from the insurance company and the effect of the PA on disease activity.</p><p><strong>Results: </strong>Of 52 PAs, 50% were initially denied. An initial denial decreased the likelihood of approval by 98% (HR, 0.02; 95% CI, <0.01-0.09; <i>P</i> < .001). The odds of denial for oral medications (odds ratio [OR], 4.91; 95% CI, 1.33-21.52; <i>P</i> = .02) and infusions (OR, 8.35; 95% CI, 1.10-88.77; <i>P</i> = .05) were significantly higher than for injections. Medicaid had higher odds of denial compared with commercial insurance (OR, 4.51; 95% CI, 1.13-22.01; <i>P</i> = .04). An initial denial by insurance significantly increased the likelihood of disease activity (OR, 6.18; 95% CI, 1.33-44.86; <i>P</i> = .03).</p><p><strong>Conclusions: </strong>Insurance restrictions delay necessary treatments, increase the likelihood of disease activity, and rarely change the approved disease-modifying therapy. Reducing PAs may lead to improved outcomes for patients with MS.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"17-21"},"PeriodicalIF":0.0,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10779716/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46401296","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Effects of Physical Therapy and Dalfampridine on Function and Quality of Life in Nonambulatory Individuals With Multiple Sclerosis: A Randomized Controlled Trial 物理治疗和达尔福林对不行动的多发性硬化症患者的功能和生活质量的影响:随机对照试验
International journal of MS care Pub Date : 2023-12-15 DOI: 10.7224/1537-2073.2023-063
Lacey E Bromley, Bianca Weinstock-Guttman
{"title":"Effects of Physical Therapy and Dalfampridine on Function and Quality of Life in Nonambulatory Individuals With Multiple Sclerosis: A Randomized Controlled Trial","authors":"Lacey E Bromley, Bianca Weinstock-Guttman","doi":"10.7224/1537-2073.2023-063","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-063","url":null,"abstract":"\u0000 \u0000 \u0000 Decreases in mobility, quality of life (QOL) and cognition are commonly seen in people with multiple sclerosis (MS). Physical therapy (PT) and exercise have been shown to improve many symptoms in ambulatory individuals with MS, however, evidence in nonambulatory people with MS is lacking. Dalfampridine is a US Food and Drug Administration-approved medication for MS that treats impaired ambulation by enhancing nerve conduction. To our knowledge, no study has examined the combined effect of PT and dalfampridine and very few studies have examined dalfampridine's effect on function in individuals with more progressive disease. The purpose of this study was to examine the effectiveness of PT combined with dalfampridine or a placebo on function, QOL, and cognition in nonambulatory individuals with MS. In addition, we explored the benefits of PT in all participants to increase the extremely limited research in this population.\u0000 \u0000 \u0000 \u0000 Adults with MS were randomly assigned to receive dalfampridine (n = 13) or placebo (n = 14) for 12 weeks in conjunction with PT treatment 2 times a week. Function, QOL, and cognition were assessed at baseline, 6 weeks, and 12 weeks.\u0000 \u0000 \u0000 \u0000 There was a significant time × group interaction for the Multiple Sclerosis Quality of Life-54 favoring the placebo group. Both groups significantly improved on the 9-Hole Peg Test (left arm only), sitting lateral reach (right), transferring from wheelchair to mat, and repeated sit to stand.\u0000 \u0000 \u0000 \u0000 The addition of dalfampridine to physical therapy did not improve function, QOL, or cognitive processing speed. Importantly, this study demonstrated an overall benefit in function and QOL with physical therapy 2 times a week for 12 weeks for nonambulatory individuals with MS.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"80 3","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138998725","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
High-Intensity Gait Training in an Individual With Neuromyelitis Optica and Research Recommendations for Individuals With Multiple Sclerosis 一名神经脊髓炎患者的高强度步态训练及对多发性硬化症患者的研究建议
International journal of MS care Pub Date : 2023-12-04 DOI: 10.7224/1537-2073.2023-035
Rebecca Phelan, Kirsten Potter
{"title":"High-Intensity Gait Training in an Individual With Neuromyelitis Optica and Research Recommendations for Individuals With Multiple Sclerosis","authors":"Rebecca Phelan, Kirsten Potter","doi":"10.7224/1537-2073.2023-035","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-035","url":null,"abstract":"\u0000 \u0000 \u0000 Neuromyelitis optica (NMO), similar to multiple sclerosis (MS), is an autoimmune disorder affecting the central nervous system. In people with central nervous system diagnoses, high-intensity gait training (HIGT) can support neuroplasticity, improving functional mobility. While low- to moderate-intensity exercise is beneficial in improving outcomes in individuals with NMO and MS, the impact of HIGT has not been thoroughly explored. This case study explores the safety and efficacy of HIGT in an individual with NMO.\u0000 \u0000 \u0000 \u0000 A 43-year-old man with NMO participated in a HIGT program utilizing the least amount of body weight support necessary to achieve a target heart rate of 60% to 80% of heart rate reserve or a Borg Rating of Perceived Exertion score of 15 to 17 during an in-patient rehabilitation stay. Interventions incorporated stair training, gait variances, and virtual reality.\u0000 \u0000 \u0000 \u0000 The patient successfully completed a 90-minute training session 4 to 7 times per week for 6 weeks following a HIGT regimen for 40% to 60% of each session. Meaningful gains in bed mobility, transfers, and gait allowed for a discharge to his home.\u0000 \u0000 \u0000 \u0000 This case suggests that HIGT in patients with NMO can be safe and effective in improving functional mobility. Due to the similarities between NMO and MS, this case provides a framework to assist clinicians in developing a HIGT plan of care for individuals with MS. Additional research is needed to clarify HIGT parameters, including intensity and duration, to improve functional mobility in individuals with MS.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"32 5","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138603794","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Intensive Aerobic Cycling Is Feasible and Elicits Improvements in Gait Velocity in Individuals With Multiple Sclerosis: A Preliminary Study 强化有氧自行车运动可行并能改善多发性硬化症患者的步态速度:初步研究
International journal of MS care Pub Date : 2023-12-04 DOI: 10.7224/1537-2073.2023-042
Sarah B. Simmons, Alexis Skolaris, Ryan Love, Tori Fricker, Amanda L Penko, Yadi Li, Brittany Lapin, Matt Streicher, Francois Bethoux, Susan M. Linder
{"title":"Intensive Aerobic Cycling Is Feasible and Elicits Improvements in Gait Velocity in Individuals With Multiple Sclerosis: A Preliminary Study","authors":"Sarah B. Simmons, Alexis Skolaris, Ryan Love, Tori Fricker, Amanda L Penko, Yadi Li, Brittany Lapin, Matt Streicher, Francois Bethoux, Susan M. Linder","doi":"10.7224/1537-2073.2023-042","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-042","url":null,"abstract":"\u0000 \u0000 \u0000 Aerobic exercise (AEx) has many potential benefits; however, it is unknown whether individuals with multiple sclerosis (MS) can attain the optimal intensity and duration to harness its effects. Forced-rate exercise (FE) is a novel paradigm in which the voluntary pedaling rate during cycling is supplemented to achieve a higher exercise intensity. The aim of this pilot trial was to investigate the feasibility and initial efficacy of a 12-week FE or voluntary exercise (VE) cycling intervention for individuals with MS.\u0000 \u0000 \u0000 \u0000 Twenty-two participants with MS (Expanded Disability Severity Scale [EDSS] 2.0-6.5) were randomly assigned to FE (n = 12) or VE (n = 10), each with twice weekly 45-minute sessions at a prescribed intensity of 60% to 80% of maximum heart rate (HR).\u0000 \u0000 \u0000 \u0000 Eighteen individuals (FE = 11; VE = 7) completed the intervention, however, adaptations were required in both groups to overcome barriers to cycling. Overall, participants exercised for an average of 42.2 ± 2.3 minutes at an aerobic intensity of 65% ± 7% of maximum HR and a pedaling cadence of 67.3 ± 13.3 RPM. Cycling led to improved treadmill walking speed (0.61 to 0.68 m/sec, P = .010), with somewhat greater improvement with FE compared to VE (increase of 0.09 vs 0.03 m/s, respectively, P = .17) post intervention. Notably, the participant with the highest disability level (EDSS 6.5) tolerated FE but not VE.\u0000 \u0000 \u0000 \u0000 Aerobic exercise is feasible for individuals with MS, although those with increased disability may require novel paradigms such as FE to achieve targeted intensity. Further trials are warranted to investigate the effects of FE across the MS disability spectrum.\u0000","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"31 7","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138601868","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}
引用次数: 0
Using Objective and Subjective Measures of Cognition to Predict Instrumental Activities of Daily Living Abilities in Multiple Sclerosis 用客观和主观认知指标预测多发性硬化症患者日常生活能力的工具活动
International journal of MS care Pub Date : 2023-11-02 DOI: 10.7224/1537-2073.2023-023
Ariella Rubel, Heather M. DelMastro, Jennifer A. Ruiz, Albert C. Lo, Elizabeth S. Gromisch
{"title":"Using Objective and Subjective Measures of Cognition to Predict Instrumental Activities of Daily Living Abilities in Multiple Sclerosis","authors":"Ariella Rubel, Heather M. DelMastro, Jennifer A. Ruiz, Albert C. Lo, Elizabeth S. Gromisch","doi":"10.7224/1537-2073.2023-023","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-023","url":null,"abstract":"Abstract Background: Cognitive impairment, difficulty performing basic activities of daily living (ADLs) and instrumental ADLs (IADLs), depression, and fatigue are common among individuals with multiple sclerosis (MS). Some associations between these symptoms are known; however, many of their relationships remain unclear. This study investigated the contributions of subjective and objective cognition, depressive symptom severity, and fatigue on ADLs and IADLs. Methods: Participants (N = 217) were individuals with MS from a comprehensive MS center, participating in a larger study characterizing upper extremity function in MS. Outcome measures of ADL and IADL abilities were the Functional Status Index-Assistance (FSI-A) and Functional Status Index-Difficulty (FSI-D) and the Test D'évaluation Des Membres Supérieurs de Personnes Âgées (TEMPA). Predictors were objective cognition (Symbol Digit Modalities Test; SDMT), subjective cognition (Performance Scales©-Cognition; PS-C), depressive symptom severity (Center for Epidemiologic Studies Depression Scale; CES-D-10), and fatigue (Modified Fatigue Impact Scale; MFIS-5). Correlations were conducted, followed by hierarchal linear regressions. The SDMT and PS-C were entered into separate models. Results: After controlling for demographics, the SDMT significantly predicted the TEMPA and FSI-A, while the PS-C predicted only the FSI-D. The CES-D-10 predicted the FSI-D even after accounting for PS-C and SDMT, while the MFIS-5 only predicted the FSI-D when the SDMT was included. Neither the CES-D-10 nor MFIS-5 significantly predicted the FSI-A or TEMPA. Conclusions: The way an individual with MS perceived their symptoms significantly contributed to their reported difficulty with functional tasks, while only their objective cognitive functioning predicted ADL and IADL performance and the level of assistance they would require.","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"38 8","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135934420","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}
引用次数: 0
Addressing the Needs of Multiple Sclerosis Caregivers From Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol. 从诊断开始解决多发性硬化症护理人员的需求:一个全面的在线护理协议的发展。
International journal of MS care Pub Date : 2023-11-01 Epub Date: 2023-11-08 DOI: 10.7224/1537-2073.2023-075
Rosalind C Kalb, Deborah Miller, Jon Strum, Sara Loud
{"title":"Addressing the Needs of Multiple Sclerosis Caregivers From Diagnosis Onward: The Development of a Comprehensive Online Caregiver Protocol.","authors":"Rosalind C Kalb, Deborah Miller, Jon Strum, Sara Loud","doi":"10.7224/1537-2073.2023-075","DOIUrl":"https://doi.org/10.7224/1537-2073.2023-075","url":null,"abstract":"<p><strong>Background: </strong>Caregivers of individuals with multiple sclerosis (MS) have emotional, instrumental, wellness, and social needs beginning with their partner's diagnosis and continuing throughout the disease course. Their feelings of grief, anxiety, depression, isolation, and fatigue, as well as the limited time they have for their own self-care, impact their health and quality of life; yet caregiver needs often go unrecognized by health care providers, extended family, friends, and employers. This project creates an online caregiver resource that will benefit caregivers, enable MS clinicians to offer caregivers the support and resources they need in a timely and time-efficient way, and thereby benefit individuals with MS as well.</p><p><strong>Methods: </strong>We assembled a caregiver advisory board to help us identify caregiver needs and corresponding resources starting from diagnosis and continuing throughout the disease course. We then surveyed the larger MS caregiver community for validation and refinement of the resource list. Each of the identified resources was then vetted for quality and accuracy by the authors.</p><p><strong>Results: </strong>The caregiver resources are now ready to be put into a dedicated website that will allow easy access to information, support, tools, and resources as needed.</p><p><strong>Conclusions: </strong>The process of creating this caregiver resource confirmed longstanding findings in the literature about the caregiving role. The resource that has been created will benefit caregivers of individuals with MS, their loved ones, and MS clinicians.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 6","pages":"273-277"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10634596/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134648928","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}
引用次数: 0
Complete Transcript: Opportunities in Multiple Sclerosis Care Partner Research: An Interview. 完整的文字记录:机会在多发性硬化症护理合作伙伴研究:采访。
International journal of MS care Pub Date : 2023-11-01 Epub Date: 2023-11-14 DOI: 10.7224/1537-2073-25.6.278a
{"title":"Complete Transcript: Opportunities in Multiple Sclerosis Care Partner Research: An Interview.","authors":"","doi":"10.7224/1537-2073-25.6.278a","DOIUrl":"https://doi.org/10.7224/1537-2073-25.6.278a","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 6","pages":""},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10660195/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138459866","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}
引用次数: 0
Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals With Multiple Sclerosis: A Randomized Pilot Study Trial. 双臂干预对多发性硬化症患者非正式照护者情绪结局的影响:一项随机先导研究试验
International journal of MS care Pub Date : 2023-11-01 Epub Date: 2023-11-08 DOI: 10.7224/1537-2073.2022-111
Sara L Douglas, Matthew Plow, Tanya Packer, Amy R Lipson, Michelle J Lehman
{"title":"Effect of 2-Arm Intervention on Emotional Outcomes in Informal Caregivers of Individuals With Multiple Sclerosis: A Randomized Pilot Study Trial.","authors":"Sara L Douglas, Matthew Plow, Tanya Packer, Amy R Lipson, Michelle J Lehman","doi":"10.7224/1537-2073.2022-111","DOIUrl":"10.7224/1537-2073.2022-111","url":null,"abstract":"<p><strong>Background: </strong>Caregivers of people with multiple sclerosis (MS) report poor emotional outcomes yet few interventions have been tested. The goal of this study was to compare the effectiveness of a remotely delivered intervention with 2 arms (ie, website and telecoaching vs website only) aimed at reducing depression, anxiety, stress, and distress in informal caregivers of individuals with MS.</p><p><strong>Methods: </strong>From March 2021 through August 2021, 151 care-givers were enrolled in the study. The intervention occurred over a 4-month period. The website plus telecoaching arm received (a) a monthly coaching session focused on information, skill building, and support that was delivered by a licensed social worker via videoconference or telephone, and (b) had access to a study-designed website for caregivers of individuals with MS. The website-only arm did not receive coaching sessions and had the same website access. Data were obtained at baseline, immediately after the intervention period, and 6 weeks after the intervention.</p><p><strong>Results: </strong>A linear mixed-effects model using an autoregressive covariance structure was used. It showed that the group by time interaction was statistically significant for the overall composite emotion score (depression, anxiety, stress) (<i>P</i> = .037) and the stress subscale score (<i>P</i> = .047), and it indicated that the website plus telecoaching arm demonstrated greater effectiveness at reducing the overall composite emotion and stress subscale scores.</p><p><strong>Conclusions: </strong>Use of a remotely delivered psychoeducational intervention that included individual coaching sessions as well as website access demonstrated preliminary efficacy in improving emotional outcomes in caregivers of individuals with MS. Further testing of the intervention with a larger sample is recommended.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":" ","pages":"252-258"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10634597/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43417122","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}
引用次数: 0
LETTER FROM THE GUEST EDITOR. 客座编辑的来信。
International journal of MS care Pub Date : 2023-11-01 Epub Date: 2023-11-08 DOI: 10.7224/1537-2073-25.6.vi
Marcia Finlayson
{"title":"LETTER FROM THE GUEST EDITOR.","authors":"Marcia Finlayson","doi":"10.7224/1537-2073-25.6.vi","DOIUrl":"https://doi.org/10.7224/1537-2073-25.6.vi","url":null,"abstract":"","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 6","pages":"vi"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10634594/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134648929","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}
引用次数: 0
Symptom Management Among Multiple Sclerosis Care Partners in Canada. 加拿大多发性硬化症护理伙伴的症状管理。
International journal of MS care Pub Date : 2023-11-01 Epub Date: 2023-11-08 DOI: 10.7224/1537-2073.2022-113
Katherine L Cardwell, Taylor A Hume, Odessa J McKenna, Lara A Pilutti, Afolasade Fakolade
{"title":"Symptom Management Among Multiple Sclerosis Care Partners in Canada.","authors":"Katherine L Cardwell, Taylor A Hume, Odessa J McKenna, Lara A Pilutti, Afolasade Fakolade","doi":"10.7224/1537-2073.2022-113","DOIUrl":"https://doi.org/10.7224/1537-2073.2022-113","url":null,"abstract":"<p><strong>Background: </strong>Managing the heterogeneity and unpredictability of multiple sclerosis (MS) symptoms can be difficult for MS care partners. This study aimed to characterize the symptoms managed by MS care partners, recognize relationships between symptom management difficulty and other aspects of the caregiving role, and identify supplemental sources of care-giving support used by care partners.</p><p><strong>Methods: </strong>A Canadian cohort of MS care partners completed an online survey capturing care-partner characteristics, care-recipient symptoms, care-partner difficulty with managing symptoms, and sources of caregiving assistance. Descriptive analysis, analysis of variance, and χ<sup>2</sup> tests were used to compare differences in care-partner characteristics by symptom management difficulty groups, defined as low (<4 symptoms), medium (5-7 symptoms), and high difficulty (>7 symptoms).</p><p><strong>Results: </strong>Care partners to individuals with MS (N = 475) reported a median of 8 symptoms (IQR = 4) experienced by their care-recipients. The most frequent symptoms reported were fatigue (89.1%), weakness (87.2%), and depression (81.9%). Care partners reported a median of 6 (IQR = 5) symptoms being <i>somewhat</i> or <i>very difficult</i> to manage. Balance or mobility impairments (20.3%), depression (14.3%), and vision difficulties (13.1%) were most frequently reported as <i>very difficult</i> to manage. Assisting with activities of daily living (<i>P</i> < .001) and time spent caregiving (<i>P</i> = .035) varied significantly between symptom management difficulty groups. Additional help available was reported by 77.5%, 17.8%, and 41.6% of care partners reporting low, medium, and high symptom management difficulty, respectively (<i>P</i> < .001).</p><p><strong>Conclusions: </strong>Care partners of individuals with MS report difficulty in managing multiple, variable symptoms and often have no additional help. These findings suggest that MS care partners experience difficulty managing many diverse symptoms and may benefit from additional support.</p>","PeriodicalId":14150,"journal":{"name":"International journal of MS care","volume":"25 6","pages":"281-287"},"PeriodicalIF":0.0,"publicationDate":"2023-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10634598/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134648931","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}
引用次数: 0
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