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Integrating Caregiver Support into Multiple Sclerosis Care 将护理人员支持纳入多发性硬化症护理
IF 2.5 Q3 CLINICAL NEUROLOGY Pub Date : 2020-01-27 DOI: 10.1155/2020/3436726
J. Martindale-Adams, Jeffrey K Zuber, Michael C Levin, R. Burns, M. Graney, L. Nichols
With loss of mobility in Multiple Sclerosis (MS) comes increase in caregiver assistance, burden, stress, and depression. This 6-month feasibility study used a pre-post design to test integration of a validated, behavioral, caregiving intervention into an ongoing MS clinic. Because the program focused on caregivers, there were no additional services provided to the persons living with MS other than usual medical care. Twenty-five MS caregivers received REACH VA (Resources for Enhancing All Caregivers’ Health in the VA), a six-session behavior-focused intervention during two to three months designed to increase caregiver skills in managing their own stress and burden and MS related issues and concerns, with a focus on mobility. Caregivers were assessed at baseline, three, and six months. Caregivers’ expectations of the program were to receive education on MS, caregiving and stress management skills, and support. The major benefits caregivers reported were understanding their loved one’s condition and how to better provide care. At six months, caregivers reported statistically and clinically significant improvements in depressive symptoms and bother with challenging MS behaviors. Persons with MS reported benefit for their caregivers and for themselves; 71% reported that their caregivers had helped them with mobility and function. Study results suggest that the addition of the brief REACH caregiver intervention into an MS clinic would benefit both caregivers and persons with MS. Although the intervention was six sessions over three months, benefit persisted at six months, suggesting durability of effects. This trial is registered with ClinicalTrials.gov NCT02835677 .
随着多发性硬化症(MS)患者活动能力的丧失,护理人员的帮助、负担、压力和抑郁都会增加。这项为期6个月的可行性研究采用了前后设计,以测试一种经过验证的、行为的护理干预措施与正在进行的多发性硬化症诊所的整合。由于该计划的重点是照顾者,除了通常的医疗护理外,没有向MS患者提供额外的服务。25名MS护理人员接受了REACH VA(增强VA所有护理人员健康的资源),这是一项为期两到三个月的六期行为干预,旨在提高护理人员管理自身压力和负担以及MS相关问题和关注点的技能,重点是移动性。护理人员在基线、3个月和6个月时进行评估。护理人员对该计划的期望是接受有关多发性硬化症、护理和压力管理技能以及支持的教育。护理人员报告的主要好处是了解他们所爱的人的状况以及如何更好地提供护理。在6个月时,护理人员报告了统计上和临床上的显著改善,抑郁症状和具有挑战性的MS行为。多发性硬化症患者报告他们的照顾者和他们自己受益;71%的人报告说,他们的护理人员帮助他们的行动和功能。研究结果表明,在多发性硬化症诊所中加入简短的REACH护理人员干预将使护理人员和多发性硬化症患者都受益。尽管干预是在三个月的时间里进行的六次干预,但益处持续了六个月,这表明效果的持久性。该试验已在ClinicalTrials.gov注册NCT02835677。
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引用次数: 11
Biofeedback Based Home Balance Training can Improve Balance but Not Gait in People with Multiple Sclerosis. 基于生物反馈的家庭平衡训练可以改善多发性硬化症患者的平衡,但不能改善步态。
IF 2.5 Q3 CLINICAL NEUROLOGY Pub Date : 2019-12-23 eCollection Date: 2019-01-01 DOI: 10.1155/2019/2854130
Klara Novotna, Marketa Janatova, Karel Hana, Olga Svestkova, Jana Preiningerova Lizrova, Eva Kubala Havrdova

Background: Impaired balance is common in people with multiple sclerosis (MS) and can be present even in those with a mild disability level. With increasing disability, gait, and balance impairment progress, and lead to increased risk of falls. In some recent studies, interactive commercial video games were used for improving balance, but their limitation is their lack of individual training parameter settings needed for rehabilitation purposes. The aim of this study was to evaluate the feasibility and effect of balance exercise in the home setting using the rehabilitation Homebalance® system.

Methods: A single-centre, controlled, single blind study with allocation to intervention group or to control group was utilised. Participants were assessed at baseline, after four weeks of home-based balance training, and follow-up after four weeks. The primary outcomes were the Berg Balance Test (BBT). The secondary outcome measures included the Mini-BESTest, Timed Up, and Go Test (part of Mini-BESTest), and spatio-temporal gait parameter evaluation using the GAITRite instrument. The patient reported outcomes (PRO) included the 12-Item MS Walking Scale, Activities-specific Balance Confidence Scale, and the Falls Efficacy Scale.

Results: A total of 39 people with Multiple Sclerosis (10 men) were enrolled into the study. The mean age of participants was 40.69 ± 10.2 years, with a mean disease duration 14.76 ± 9.1 years and mean disability level 3.8 ± 1.9 EDSS (EDSS range 1.5-7). Statistically significant improvements within the home exercise group were present for the BBT and the Mini-BESTest. This improvement was more significant in the subgroup with moderate and higher disability (EDSS 4.5-7). All other gait parameters and PRO did not show any improvement. Follow-up assessment after four weeks showed that the reached improvement persisted for a short time period after finishing the regular training regimen.

Conclusion: In comparison with no intervention, a short-term programme of home-based balance training using Homebalance® improved balance but not gait performance in a group of people with MS. It seems that home-based balance training tailored according to individual needs by a physiotherapist may be a future approach to consider for telerehabilitation of people with MS.

背景:平衡障碍在多发性硬化症(MS)患者中很常见,即使在轻度残疾水平的患者中也可能存在。随着残疾的增加,步态和平衡障碍的进展,并导致跌倒的风险增加。在最近的一些研究中,交互式商业视频游戏被用于提高平衡性,但它们的局限性在于缺乏康复目的所需的个人训练参数设置。本研究的目的是评估使用康复Homebalance®系统在家庭环境中进行平衡训练的可行性和效果。方法:采用单中心、对照、单盲研究,分为干预组和对照组。在为期四周的家庭平衡训练后,参与者在基线进行评估,并在四周后进行随访。主要结果为Berg平衡测试(BBT)。次要结果测量包括Mini-BESTest, Timed Up和Go测试(Mini-BESTest的一部分),以及使用GAITRite仪器进行时空步态参数评估。患者报告的结果(PRO)包括12项MS步行量表、特定活动平衡信心量表和跌倒疗效量表。结果:共有39名多发性硬化症患者(10名男性)被纳入研究。参与者平均年龄40.69±10.2岁,平均病程14.76±9.1年,平均残疾水平3.8±1.9 EDSS (EDSS范围1.5-7)。在家庭锻炼组中,BBT组和mini - best组都有统计学上的显著改善。这种改善在中度和重度残疾亚组中更为显著(EDSS 4.5-7)。所有其他步态参数和PRO没有任何改善。四周后的随访评估表明,在完成常规训练方案后,达到的改善持续了很短的时间。结论:与不干预相比,使用Homebalance®的短期家庭平衡训练方案改善了一组MS患者的平衡,但没有改善步态表现。似乎物理治疗师根据个人需求量身定制的家庭平衡训练可能是未来考虑MS患者远程康复的一种方法。
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引用次数: 9
Multiple Sclerosis in the Emirati Population: Onset Disease Characterization by MR Imaging. 阿联酋人口中的多发性硬化症:通过磁共振成像确定发病特征。
IF 2.2 Q3 CLINICAL NEUROLOGY Pub Date : 2019-11-25 eCollection Date: 2019-01-01 DOI: 10.1155/2019/7460213
Manzoor Ahmed, Ruqqiya Mir, Mustafa Shakra, Safana Al Fardan

Background and objectives: Multiple Sclerosis (MS) epidemiology is on the path of globalization mainly due to changing environmental factors. The prevalence of MS is on the rise in the Middle East and Persian Gulf region. Our observations has led us to hypothesize a heavy MRI lesion load at the onset of disease in a relatively younger native population. We aimed to estimate and characterize the onset disease on MRI using McDonald's criteria while applying its terms of "Dissemination in Space (DIS) and Dissemination in Time (DIT)".

Materials and methods: Retrospective review of onset MRI studies of 181 Emirati (native) individuals. Basic demographics were captured. Only 47 patients with Clinically Definite MS (CDMS) were included who had onset diagnostic MRI available. Lesion load was quantified using the specific zones of involvement designated for DIS: (1) Periventricular (PVZ) (I), (2) Juxta-cortical (II) (3) Infra-tentorial (III) and, (4) Spinal cord (IV). PVZ was sub-classified and lesions were quantified. A single enhancing lesion was required for DIT.

Results: Average age of onset was about 26 years with female dominance of about 2 : 1. About 50% had all 4 zones and about 85% had at least 3 zones involved at the onset. Involvement of only 1 zone was rare. Dissemination in time (DIT) in brain and/or cord was present in approximately 50%. Each of the 4 zones were involved in at least 70% of cases. PVZ was not spared in any case with at least 3 lesions present in approx. 95% and ≥12 lesions in approx. half of the patients. Spinal cord specifically cervical cord was involved in up to 80% with typical patchy lesions.

Conclusion: Onset disease characterization using MRI in a young Emirati cohort showed a heavy lesion load in the brain and spinal cord at the onset, signifying cumulative disease before presentation. Disseminated disease also facilitated early diagnosis of MS. The findings have significant potential ramifications for local environmental and cultural factors, as well as disease course and disability progression.

背景和目的:多发性硬化症(MS)流行病学正走向全球化,这主要是由于环境因素的变化。多发性硬化症在中东和波斯湾地区的发病率呈上升趋势。根据我们的观察,我们推测在相对年轻的本地人群中,发病时的磁共振成像病变负荷较重。我们的目的是采用麦克唐纳标准,同时应用其 "空间扩散(DIS)和时间扩散(DIT)"术语,估计并描述 MRI 上的发病特征:对 181 名阿联酋人(本地人)的发病 MRI 研究进行回顾性审查。采集了基本人口统计数据。仅纳入了 47 名有发病诊断磁共振成像的临床确诊多发性硬化症(CDMS)患者。病变负荷采用 DIS 指定的特定受累区进行量化:(1) 脑室周围 (PVZ) (I);(2) 皮层下 (II);(3) 胸膜下 (III) 和 (4) 脊髓 (IV)。对 PVZ 进行了细分,并对病灶进行了量化。结果:平均发病年龄约为 26 岁,女性约占 2 :1.约 50%的患者发病时涉及全部 4 个区,约 85%的患者发病时至少涉及 3 个区。只有一个区域受累的情况很少见。约50%的患者会在大脑和/或脊髓中出现及时扩散(DIT)。在至少 70% 的病例中,4 个区均受累。约 95% 的病例中至少有 3 个病灶,约一半的病例中病灶数≥12 个。高达80%的患者脊髓(尤其是颈髓)受累,出现典型的斑片状病变:结论:在年轻的阿联酋人群体中使用核磁共振成像进行发病特征描述显示,发病时大脑和脊髓的病变负荷很重,这表明疾病在发病前已经累积。弥散性疾病也有助于多发性硬化症的早期诊断。这些发现对当地环境和文化因素以及病程和残疾进展具有重要的潜在影响。
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引用次数: 0
Is There Any Relationship between Upper and Lower Limb Impairments in People with Multiple Sclerosis? A Kinematic Quantitative Analysis 多发性硬化症患者的上肢和下肢损伤有关系吗?A运动学定量分析
IF 2.5 Q3 CLINICAL NEUROLOGY Pub Date : 2019-10-09 DOI: 10.1155/2019/9149201
G. Coghe, F. Corona, Giuseppina Pilloni, M. Porta, J. Frau, L. Lorefice, G. Fenu, E. Cocco, M. Pau
Background In people with multiple sclerosis (pwMS), disability is generally assessed on the basis of ambulation abilities, whereas upper limb motor dysfunctions are less frequently considered. Nevertheless, they can severely affect the quality of life of pwMS. To date, it remains mostly unknown whether a relationship exists between upper and lower limb impairments. Aim To investigate the existence of a relationship between upper and lower limb impairments in pwMS based on two fundamental motor tasks, namely walking and hand-to-mouth (HTM) movement. Methods Twenty-eight pwMS with Expanded Disability Status Scale (EDSS) scores in the range of 1–6, and 21 healthy controls (HC) underwent a kinematic analysis of gait and HTM movement performed with a motion capture system. The spatiotemporal parameters for the two tasks were calculated and correlated using Spearman's rank correlation coefficients. Results The pwMS performed worse than HC on both tasks. Small to large correlations were found between the total HTM movement duration and most of the gait parameters (rho, 0.35–0.68; p < 0.05). Conclusions Both upper and lower limb motor abilities in pwMS worsen as disability increases. Nevertheless, their relationship is only moderate. This finding emphasizes the need for specific tests to quantify disability considering the overall motor function in pwMS.
在多发性硬化症(pwMS)患者中,残疾通常是根据行走能力来评估的,而上肢运动功能障碍则很少被考虑。然而,它们会严重影响pwMS患者的生活质量。到目前为止,上肢和下肢损伤之间是否存在关系尚不清楚。目的探讨在行走和手到口运动两项基本运动任务的基础上,pwMS患者的上肢和下肢损伤是否存在关系。方法28例扩展残疾状态量表(EDSS)评分在1 ~ 6分之间的pwMS患者和21例健康对照者采用运动捕捉系统对步态和HTM运动进行运动学分析。计算两个任务的时空参数并使用Spearman等级相关系数进行相关。结果pwMS组在两项任务上的表现均低于HC组。HTM总运动时间与大多数步态参数之间存在或大或小的相关性(rho, 0.35-0.68;P < 0.05)。结论随着残疾程度的增加,pwMS患者的上肢和下肢运动能力均恶化。然而,他们的关系只是温和的。这一发现强调,考虑到pwMS的整体运动功能,需要进行特定的测试来量化残疾。
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引用次数: 11
A Pilot Study to Assess At-Home Speed of Processing Training for Individuals with Multiple Sclerosis. 一项评估多发性硬化症患者在家处理训练速度的初步研究。
IF 2.5 Q3 CLINICAL NEUROLOGY Pub Date : 2019-06-03 eCollection Date: 2019-01-01 DOI: 10.1155/2019/3584259
Lindsay Barker, Brian C Healy, Emily Chan, Kaitlynne Leclaire, Bonnie I Glanz

Objective: Cognitive impairment is a common symptom of multiple sclerosis (MS), yet treatment is currently limited. The primary goal of this pilot study was to assess the feasibility and acceptability of an at-home, five-week computerized speed of processing (SOP) training intervention for MS patients. In addition, we examined the utility of the intervention to improve speed of information processing, memory, executive function, and health-related quality of life (HRQOL).

Method: Fifteen subjects were assigned five weeks of SOP training, two times per week, for a total of ten sessions. Subjects were trained on five computerized SOP tasks that required processing of increasingly complex visual stimuli in successively shorter presentation times. Subjects were given a neuropsychological test battery that included measures of speed of information processing, verbal memory, visual spatial memory, and executive function. Subjects were also administered patient-reported outcome (PRO) measures to assess HRQOL, depression, and work productivity. Neuropsychological and PRO batteries were completed at baseline and after five weeks.

Results: Eighty percent of subjects completed the five-week intervention (n = 12). Significant improvements were observed on some, but not all, measures of speed of information processing, verbal memory, and executive function. There were no significant changes in HRQOL.

Conclusion: This pilot study supports the feasibility of an at-home SOP training intervention for individuals with MS. SOP training was associated with improvements in several cognitive domains. Larger, randomized controlled trials are warranted.

目的:认知障碍是多发性硬化症(MS)的常见症状,但目前治疗有限。本初步研究的主要目的是评估对多发性硬化症患者进行为期五周的计算机化处理速度(SOP)训练干预的可行性和可接受性。此外,我们检查了干预措施在提高信息处理速度、记忆、执行功能和健康相关生活质量(HRQOL)方面的效用。方法:15名被试接受为期5周的SOP培训,每周2次,共10次。受试者接受五项计算机化SOP任务的训练,这些任务要求在连续较短的呈现时间内处理越来越复杂的视觉刺激。研究对象接受了一系列神经心理测试,包括信息处理速度、言语记忆、视觉空间记忆和执行功能。受试者还接受了患者报告结果(PRO)测量,以评估HRQOL、抑郁和工作效率。神经心理学和PRO电池分别在基线和五周后完成。结果:80%的受试者完成了为期5周的干预(n = 12)。在一些(但不是全部)信息处理速度、言语记忆和执行功能方面,观察到显著的改善。HRQOL无明显变化。结论:本初步研究支持对多发性硬化症患者进行家庭SOP培训干预的可行性。SOP培训与多个认知领域的改善有关。更大规模的随机对照试验是有必要的。
{"title":"A Pilot Study to Assess At-Home Speed of Processing Training for Individuals with Multiple Sclerosis.","authors":"Lindsay Barker,&nbsp;Brian C Healy,&nbsp;Emily Chan,&nbsp;Kaitlynne Leclaire,&nbsp;Bonnie I Glanz","doi":"10.1155/2019/3584259","DOIUrl":"https://doi.org/10.1155/2019/3584259","url":null,"abstract":"<p><strong>Objective: </strong>Cognitive impairment is a common symptom of multiple sclerosis (MS), yet treatment is currently limited. The primary goal of this pilot study was to assess the feasibility and acceptability of an at-home, five-week computerized speed of processing (SOP) training intervention for MS patients. In addition, we examined the utility of the intervention to improve speed of information processing, memory, executive function, and health-related quality of life (HRQOL).</p><p><strong>Method: </strong>Fifteen subjects were assigned five weeks of SOP training, two times per week, for a total of ten sessions. Subjects were trained on five computerized SOP tasks that required processing of increasingly complex visual stimuli in successively shorter presentation times. Subjects were given a neuropsychological test battery that included measures of speed of information processing, verbal memory, visual spatial memory, and executive function. Subjects were also administered patient-reported outcome (PRO) measures to assess HRQOL, depression, and work productivity. Neuropsychological and PRO batteries were completed at baseline and after five weeks.</p><p><strong>Results: </strong>Eighty percent of subjects completed the five-week intervention (n = 12). Significant improvements were observed on some, but not all, measures of speed of information processing, verbal memory, and executive function. There were no significant changes in HRQOL.</p><p><strong>Conclusion: </strong>This pilot study supports the feasibility of an at-home SOP training intervention for individuals with MS. SOP training was associated with improvements in several cognitive domains. Larger, randomized controlled trials are warranted.</p>","PeriodicalId":46096,"journal":{"name":"Multiple Sclerosis International","volume":"2019 ","pages":"3584259"},"PeriodicalIF":2.5,"publicationDate":"2019-06-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1155/2019/3584259","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"37392524","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: 1
Repeated Working Memory Training Improves Task Performance and Neural Efficiency in Multiple Sclerosis Patients and Healthy Controls. 重复工作记忆训练可提高多发性硬化症患者和健康对照组的任务表现和神经效率。
IF 2.2 Q3 CLINICAL NEUROLOGY Pub Date : 2019-04-16 eCollection Date: 2019-01-01 DOI: 10.1155/2019/2657902
Naiara Aguirre, Álvaro Javier Cruz-Gómez, Anna Miró-Padilla, Elisenda Bueichekú, Ricardo Broseta Torres, César Ávila, Carla Sanchis-Segura, Cristina Forn

Background/objective: To explore the effectiveness of a specific working memory (WM) training program in MS patients and healthy controls (HC).

Method: 29 MS patients and 29 matched HC were enrolled in the study. MS and HC were randomly split into two groups: nontraining groups (15HC/14 MS) and training groups (14 HC/15 MS). Training groups underwent adaptive n-back training (60 min/day; 4 days). Functional magnetic resonance imaging (fMRI) was used to monitor brain activity during n-back performance (conditions: 0-back, 2-back, and 3-back) at 3 time points: (1) baseline, (2) post-training (+7days), and (3) follow-up (+35days).

Results: In post-training and follow-up fMRI sessions, trained groups (HC and MS patients) exhibited significant reaction time (RT) reductions and increases in Correct Responses (CRs) during 2-back and 3-back performance. This improvement of task performance was accompanied by a decrease in brain activation in the WM frontoparietal network. The two effects were significantly correlated.

Conclusions: After WM training, both cognitively preserved MS patients and HC participants showed task performance improvement made possible by neuroplastic processes that enhanced neural efficiency.

背景/目的探讨特定工作记忆(WM)训练计划对多发性硬化症患者和健康对照组(HC)的有效性。MS和HC被随机分为两组:非训练组(15HC/14 MS)和训练组(14HC/15 MS)。训练组接受自适应 n-back 训练(60 分钟/天;4 天)。功能磁共振成像(fMRI)用于监测在三个时间点(1)基线、(2)训练后(+7天)和(3)随访(+35天)进行n-back训练(条件:0-back、2-back和3-back)时的大脑活动:结果:在训练后和后续的 fMRI 治疗中,训练组(HC 和 MS 患者)的反应时间(RT)显著缩短,2-back 和 3-back 表现中的正确反应(CR)显著增加。在任务表现提高的同时,WM 前顶叶网络的脑激活也有所降低。这两种效应明显相关:结论:在接受 WM 训练后,认知功能保持良好的多发性硬化症患者和高危人群的任务表现都有所改善,这是由于神经可塑性过程提高了神经效率。
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引用次数: 0
Occupational Therapy in Fatigue Management in Multiple Sclerosis: An Umbrella Review. 职业疗法在多发性硬化症疲劳管理中的应用:综述。
IF 2.5 Q3 CLINICAL NEUROLOGY Pub Date : 2019-03-21 eCollection Date: 2019-01-01 DOI: 10.1155/2019/2027947
Angela Salomè, Tullia Sasso D'Elia, Giorgia Franchini, Valter Santilli, Teresa Paolucci

Background. Fatigue is one of the most invalidant symptoms of Multiple Sclerosis (MS) that negatively affects occupational and work performance and social participation. Occupational therapy (OT) assessment and treatment of impairments related to fatigue can have a significant and positive impact on the quality of life. Methods. An umbrella review has been carried out to provide rehabilitative decision makers in healthcare with insight into the role of OT in fatigue management in Multiple Sclerosis. The question is, what type of treatment provided by occupational therapist is more effective in reducing fatigue in Multiple Sclerosis? A search of literature published until June 2018 was undertaken by three independent reviewers using PubMed, PEDro, and Cochrane Library database including systematic reviews and meta-analyses of the last 10 years. Results. 10 studies were selected (5 systematic reviews, 1 meta-analysis, 3 reviews, and 1 guideline). Conclusions. Fatigue management programs have moderate evidence; other strategies such as OT strategies and telerehabilitation show low evidence.

背景。疲劳是多发性硬化症(MS)最无效的症状之一,对职业和工作表现以及社会参与产生负面影响。职业疗法(OT)评估和治疗与疲劳相关的损伤可以对生活质量产生显著和积极的影响。方法。一个总括性的审查已经进行,以提供康复决策者在医疗保健与洞察的作用,OT在疲劳管理多发性硬化症。问题是,职业治疗师提供的哪种治疗对减轻多发性硬化症患者的疲劳更有效?三位独立审稿人使用PubMed、PEDro和Cochrane图书馆数据库对2018年6月之前发表的文献进行了检索,包括过去10年的系统评价和荟萃分析。结果:共纳入10项研究(5项系统综述,1项荟萃分析,3项综述,1项指南)。结论。疲劳管理方案有适度的证据;其他策略,如OT策略和远程康复显示低证据。
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引用次数: 19
Real-Life Outcome in Multiple Sclerosis in the Czech Republic. 捷克共和国多发性硬化症的现实生活结果。
IF 2.5 Q3 CLINICAL NEUROLOGY Pub Date : 2019-02-18 eCollection Date: 2019-01-01 DOI: 10.1155/2019/7290285
Gisela Kobelt, Linus Jönsson, Miluse Pavelcova, Eva Kubala Havrdová

Background: Cohort studies and registries provide opportunities to estimate long-term outcome in multiple sclerosis.

Objectives: To describe changes in disability (EDSS), relapse activity, and health care consumption over the period 2008-2015 by combining two Czech cost-of-illness studies with disease data from the MS Center in Prague.

Methods: The combined dataset included 426 patients with a mean observation time of 8.3 years. A Cox proportional hazards model with time-varying covariates for treatment, disease course, and EDSS was applied to estimate the effect of treatment on the risk of progression to EDSS 4 and the risk of relapses. The use of health care resources (hospitalization, consultation, and tests) was compared between the two cross-sectional studies.

Results: Total health care costs appeared stable between 2008 and 2015, despite more intense use of disease-modifying treatments in 2015 (52% of patients versus 31% in 2008). 39% of patients starting treatment at EDSS 0-3 in 2008 progressed to EDSS 4 or higher by 2015, while 65% of patients starting at EDSS 0-2 remained stable. The number of relapses was associated with a higher risk of progression. In a marginal structural Cox model of the relapse risk, treatment with natalizumab or fingolimod was associated with a lower risk of relapse (hazard ratio 0.68, p<0.01). Treatment with natalizumab or fingolimod was associated with a lower risk of progression to EDSS 4.

Conclusion: Our results link relapses to progression and indicate that the newer treatments have a better effectiveness, despite difficulties caused by small a sample size, administrative rules guiding treatment, and absence of a random comparator group.

背景:队列研究和登记为估计多发性硬化症的长期预后提供了机会。目的:通过结合两项捷克疾病成本研究和布拉格MS中心的疾病数据,描述2008-2015年期间残疾(EDSS)、复发活动和医疗保健消费的变化。方法:合并数据集包括426例患者,平均观察时间8.3年。采用具有治疗、病程和EDSS时变协变量的Cox比例风险模型来估计治疗对进展为EDSS 4的风险和复发风险的影响。两项横断面研究比较了卫生保健资源(住院、咨询和检查)的使用情况。结果:2008年至2015年期间,尽管2015年更多地使用了改善疾病的治疗方法(52%的患者对2008年的31%),但医疗保健总成本保持稳定。2008年开始治疗的EDSS 0-3级患者中有39%到2015年进展到EDSS 4级或更高,而开始治疗的EDSS 0-2级患者中有65%保持稳定。复发的次数与较高的进展风险相关。在复发风险的边际结构Cox模型中,使用natalizumab或fingolimod治疗与较低的复发风险相关(风险比0.68,p)。结论:我们的研究结果将复发与进展联系起来,并表明新治疗具有更好的有效性,尽管样本量小、指导治疗的行政规则以及缺乏随机比较组造成了困难。
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引用次数: 5
Enduring Clinical Value of Copaxone® (Glatiramer Acetate) in Multiple Sclerosis after 20 Years of Use. Copaxone®(醋酸格拉替默)治疗多发性硬化症20年后的持久临床价值
IF 2.5 Q3 CLINICAL NEUROLOGY Pub Date : 2019-01-15 eCollection Date: 2019-01-01 DOI: 10.1155/2019/7151685
Daniel R Wynn

Multiple sclerosis (MS) is a chronic progressive neurodegenerative demyelinating disease affecting the central nervous system. Glatiramer acetate (GA; Copaxone®) was the first disease-modifying treatment (DMT) for MS successfully tested in humans (1977) and was approved by the US Food and Drug Administration in December 1996. Since then, there have been numerous developments in the MS field: advances in neuroimaging allowing more rapid and accurate diagnosis; the availability of a range of DMTs including immunosuppressant monoclonal antibodies and oral agents; a more holistic approach to treatment by multidisciplinary teams; and an improved awareness of the need to consider a patient's preferences and patient-reported outcomes such as quality of life. The use of GA has endured throughout these advances. The purpose of this article is to provide an overview of the important developments in the MS field during the 20 years since GA was approved and to review clinical data for GA in MS, with the aim of understanding the continued and widespread use of GA. Both drug-related (efficacy versus side-effect profile and monitoring requirements) and patient factors (preferences regarding mode of administration and possible pregnancy) will be explored.

多发性硬化症(MS)是一种影响中枢神经系统的慢性进行性神经退行性脱髓鞘疾病。醋酸格拉替默;Copaxone®)是首个在人类身上成功测试的多发性硬化症疾病改善治疗(DMT)(1977年),并于1996年12月获得美国食品和药物管理局(fda)批准。从那时起,多发性硬化症领域有了许多发展:神经影像学的进步使诊断更加快速和准确;包括免疫抑制单克隆抗体和口服药物在内的一系列dmt的可用性;多学科团队采用更全面的治疗方法;并且提高了对考虑患者偏好和患者报告的结果(如生活质量)的必要性的认识。遗传基因的使用在这些进步中一直存在。本文的目的是概述自GA被批准以来20年来MS领域的重要发展,并回顾GA在MS中的临床数据,目的是了解GA的持续和广泛应用。将探讨与药物相关(疗效与副作用概况和监测要求)和患者因素(关于给药方式和可能怀孕的偏好)。
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引用次数: 18
Anti-Myelin Oligodendrocyte Glycoprotein and Human Leukocyte Antigens as Markers in Pediatric and Adolescent Multiple Sclerosis: on Diagnosis, Clinical Phenotypes, and Therapeutic Responses. 抗髓磷脂少突胶质细胞糖蛋白和人白细胞抗原作为儿童和青少年多发性硬化症的标志物:诊断、临床表型和治疗反应。
IF 2.5 Q3 CLINICAL NEUROLOGY Pub Date : 2018-11-22 eCollection Date: 2018-01-01 DOI: 10.1155/2018/8487471
Maria P Gontika, Maria C Anagnostouli

Early-onset (pediatric and adolescent) multiple sclerosis (MS) is a well-established demyelinating disease that accounts for approximately 3-5% of all MS cases. Thus, identifying potential biomarkers that can reflect the pathogenic mechanisms, disease course and prognosis, and therapeutic response in such patients is of paramount importance. Myelin oligodendrocyte glycoprotein (MOG) has been regarded as a putative autoantigen and autoantibody target in patients with demyelinating diseases for almost three decades. However, recent studies have suggested that antibodies against MOG represent a distinct clinical entity of dominantly humoral profile, with a range of clinical phenotypes closely related to the age of onset, specific patterns of disease course, and responses to treatment. Furthermore, the major histocompatibility complex (MHC)-which has been regarded as the "gold standard" for attributing genetic burden in adult MS since the early 1970s-has also emerged as the primary genetic locus in early-onset MS, particularly with regard to the human leukocyte antigen (HLA) alleles DRB1⁎1501 and DRB1⁎0401. Recent studies have investigated the potential interactions among HLA, MOG, and environmental factors, demonstrating that early-onset MS is characterized by genetic, immunogenetic, immunological, and familial trait correlations. In this paper, we review recent evidence regarding HLA-genotyping and MOG antibodies-the two most important candidate biomarkers for early-onset MS-as well as their potential application in the diagnosis and treatment of MS.

早发性(儿童和青少年)多发性硬化症(MS)是一种公认的脱髓鞘疾病,约占所有MS病例的3-5%。因此,鉴别能够反映此类患者的致病机制、病程和预后以及治疗反应的潜在生物标志物至关重要。近三十年来,髓鞘少突胶质细胞糖蛋白(MOG)一直被认为是脱髓鞘疾病患者的一种假定的自身抗原和自身抗体靶点。然而,最近的研究表明,针对MOG的抗体代表了一种独特的临床实体,主要是体液特征,具有一系列与发病年龄、疾病病程的特定模式和对治疗的反应密切相关的临床表型。此外,自20世纪70年代初以来,主要组织相容性复合体(MHC)一直被认为是确定成人MS遗传负担的“金标准”,也已成为早发性MS的主要遗传位点,特别是在人类白细胞抗原(HLA)等位基因DRB1 1501和DRB1 0401方面。最近的研究调查了HLA、MOG和环境因素之间的潜在相互作用,表明早发性MS具有遗传、免疫遗传、免疫学和家族性状相关的特征。在本文中,我们回顾了hla基因分型和MOG抗体这两个最重要的早发性MS候选生物标志物的最新证据,以及它们在MS诊断和治疗中的潜在应用。
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引用次数: 13
期刊
Multiple Sclerosis International
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