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Assessing pain in multiple sclerosis: Test-retest reliability of patient-reported outcome measures and accuracy of screening tools. 评估多发性硬化症的疼痛:患者报告的结果测量的测试-再测试可靠性和筛选工具的准确性。
IF 4.8 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-04-01 Epub Date: 2025-01-16 DOI: 10.1177/13524585241310139
Cigdem Yilmazer, Miguel D'haeseleer, Bernardita Soler, Bart Van Wijmeersch, Claudio Solaro, Ethel Ciampi, Claudia Carcamo, Paul Van Asch, Melissa Cambron, Ilse Lamers, Peter Feys

Background: Pain is a common symptom of multiple sclerosis (MS). The reliability of outcome measures for pain and the accuracy of screening tools are essential for treatment purposes.

Objectives: This study investigated the test-retest reliability of Neuropathic Pain Scale (NPS), Neuropathic Pain Symptom Inventory (NPSI), Brief Pain Inventory-Short Form (BPI-SF), Nordic Musculoskeletal Questionnaire (NMQ), Douleur Neuropathique 4 (DN4), and painDETECT, and the accuracy of DN4 and painDETECT.

Methods: 110 persons with MS were included (mean age: 45.35 ± 12.73; Expanded Disability Status Scale (EDSS): 3 (Interquartile range, IQR: 2.6)). The reliability (internal consistency, test-retest, measurement error) and accuracy (area under the curve (AUC), specificity, sensitivity, positive predictive value, and negative predictive value) were analyzed.

Results: All included pain assessment tools showed good test-retest reliability (Intraclass correlation coefficient, ICC, (95% confidence interval, CI): 0.85 (0.79-0.89)-0.89 (0.84-0.92)) and good-to-excellent internal consistency (Cronbach's α: 0.73-0.93). The test-retest reliability of NMQ was moderate to substantial (Cohen's κ = 0.54-0.87). The overall accuracy of DN4 compared to the neurologist's diagnosis was acceptable (AUC = 0.762), while that of painDETECT was poor (AUC = 0.682) and demonstrated inadequate predictive ability.

Conclusion: All pain outcome measures were reliable in patients with MS (pwMS). DN4 can be used to screen neuropathic pain in MS.Clinical trial registry name:Reliability and Validity of Outcome Measures for Pain in MS https://register.

Clinicaltrials: gov/prs/app/action/SelectProtocol?sid=S000CRMD&selectaction=Edit&uid=U0006NAA&ts=2&cx=-jzvd6m Registration number: NCT05742152.

背景:疼痛是多发性硬化症(MS)的常见症状。疼痛结果测量的可靠性和筛查工具的准确性对于治疗目的至关重要。目的:探讨神经性疼痛量表(NPS)、神经性疼痛症状调查表(NPSI)、疼痛简易调查表-短表调查表(BPI-SF)、北欧肌肉骨骼问卷(NMQ)、Douleur neuropathque 4 (DN4)和painDETECT的重测信度,以及DN4和painDETECT的准确性。方法:纳入110例多发性硬化症患者(平均年龄45.35±12.73;扩展残疾状态量表(EDSS): 3(四分位间距,IQR: 2.6)。分析信度(内部一致性、重测、测量误差)和准确性(曲线下面积(AUC)、特异性、敏感性、阳性预测值和阴性预测值)。结果:所有纳入的疼痛评估工具均具有良好的重测信度(类内相关系数ICC, 95%可信区间CI: 0.85(0.79-0.89)-0.89(0.84-0.92))和良好至优异的内部一致性(Cronbach's α: 0.73-0.93)。NMQ的重测信度为中至高(Cohen’s κ = 0.54 ~ 0.87)。与神经科医生的诊断相比,DN4的总体准确度尚可(AUC = 0.762),而painDETECT的准确度较差(AUC = 0.682),预测能力不足。结论:MS患者疼痛结局指标均可靠。DN4可用于MS神经性疼痛的筛查。临床试验注册名称:MS疼痛结局指标的信度和效度https://register.clinicaltrials.gov/prs/app/action/SelectProtocol?sid=S000CRMD&selectaction=Edit&uid=U0006NAA&ts=2&cx=-jzvd6m注册号:NCT05742152。
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引用次数: 0
Recommendations for essential medicines for multiple sclerosis in low-resource settings. 资源匮乏地区多发性硬化症的基本药物建议。
IF 4.8 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-04-01 Epub Date: 2024-12-31 DOI: 10.1177/13524585241308134
Deanna Saylor, Nick Rijke, Jennifer McDonell, Joanna Laurson-Doube, Jagannadha Avasarala, Elisa Baldin, Tapas K Banerjee, Ivana Bogdanovic, Riley Bove, D K Chawla, Kathleen Costello, Cinzia Del Giovane, Najoua El Abkari, Graziella Filippini, Matteo Foschi, Marien Gonzalez-Lorenzo, Anne Helme, Dina Jacobs, Tomas Kalincik, Aukje Mantel-Teeuwisse, Silvia Minozzi, Carlos Navas, Francesco Nonino, Oluwadamilola O Ojo, Bianca Ozcan, Elisabetta Pasi, Guy Peryer, Andrea Prato Chichiraldi, Ben Ridley, Dilraj S Sokhi, Anthony Traboulsee, Irene Tramacere, Janis Sn Tye, Simona Vecchi, Shanthi Viswanathan, Feng Xie, Maya Zeineddine, Holger Schunemann, Thomas Piggott

Background: Multiple sclerosis (MS) is a demyelinating disease of the central nervous system that, when untreated, can lead to significant disability in young adults. Despite the increase in the number of disease-modifying therapies (DMTs), many people living with MS in low-resource settings do not have access to treatment.

Objective: The primary aim was to develop recommendations on the minimum essential DMTs for MS that should be available in low-resource settings.

Methods: The Multiple Sclerosis International Federation established an independent, international panel including healthcare professionals and people with MS. This panel, in collaboration with the Cochrane MS Group and McMaster GRADE Centre, reviewed evidence for use of MS DMTs following standardized GRADE protocols including consideration of balance of benefits and harms; certainty of evidence; resources required and cost-effectiveness and values, equity, feasibility and availability in low-resource settings.

Results: For active and/or worsening forms of relapsing MS, the panel recommends use of ocrelizumab, cladribine, fingolimod, dimethyl fumarate, interferon beta and glatiramer acetate. For active and/or worsening forms of progressive MS, the panel recommends use of rituximab, ocrelizumab, glatiramer acetate, fingolimod and interferon beta.

Conclusions: Recommendations for the minimum essential DMTs for MS in low-resource settings were developed based on robust consideration of evidence and relevant context.

背景:多发性硬化症(MS)是一种中枢神经系统脱髓鞘疾病,如果不治疗,可导致年轻人严重残疾。尽管疾病改善疗法(dmt)的数量有所增加,但许多生活在资源匮乏环境中的多发性硬化症患者无法获得治疗。目的:主要目的是制定在低资源环境中应提供的MS最低必要dmt的建议。方法:多发性硬化症国际联合会建立了一个独立的国际小组,包括医疗保健专业人员和多发性硬化症患者。该小组与Cochrane多发性硬化症小组和麦克马斯特GRADE中心合作,审查了在标准化GRADE方案下使用多发性硬化症dmt的证据,包括权衡利弊;证据确凿;所需资源、成本效益和价值、公平、可行性和资源不足情况下的可用性。结果:对于活跃和/或恶化形式的复发性MS,专家组建议使用奥克雷单抗、克拉德滨、芬戈莫德、富马酸二甲酯、干扰素和醋酸格拉替默。对于活动性和/或恶化形式的进展性MS,专家组建议使用利妥昔单抗、奥克雷单抗、醋酸格拉替默、芬戈莫德和干扰素。结论:关于低资源环境下多发性硬化症最低必要dmt的建议是基于对证据和相关背景的充分考虑而制定的。
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引用次数: 0
The Barancik award lecture: Multi-disciplinary research will be the key to stop, restore, and end MS. 多学科研究将是阻止、恢复和终结多发性硬化症的关键。
IF 4.8 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-04-01 Epub Date: 2025-01-28 DOI: 10.1177/13524585251314756
Sergio E Baranzini

The past 25 years have brought extraordinary advances in our understanding of MS pathogenesis and the subsequent development of effective therapies. Collaborative genetics efforts have uncovered the association of 236 common DNA variants with disease susceptibility and the first association with disease severity, paving the way to more effective therapies, particularly for progressive forms of the disease. In parallel, and in addition to established environmental disease triggers or modifiers, new collaborative work has revealed new associations with components of the gut microbiome. This research opened a new and exciting prospect for exploring the gut-brain axis, with the potential to also provide new pharmacologic targets and diet-based therapies. Finally, with the availability of massive amounts of information and unprecedented computer power, a new wave of artificial intelligence (AI)-based research is sprawling. These investigations will result in statistically powerful predictive models to identify individuals at risk even years before the disease is clinically apparent. Furthermore, using approaches like semantic representation and causal inference, some of these approaches will be explainable in biomedical terms, thus making them trusted and facilitating their implementation in the clinical setting. The common thread that characterizes all of these advances is multi-disciplinary collaboration among scientists in the form of formal consortia, working groups, or ad hoc partnerships. This may be the "secret sauce" of modern science and the best strategy to stop, restore, and end MS.

在过去的25年里,我们对多发性硬化症发病机制的理解和有效治疗的后续发展取得了非凡的进展。遗传学合作发现了236种常见的DNA变异与疾病易感性的关联,以及与疾病严重程度的首次关联,为更有效的治疗铺平了道路,特别是对进行性疾病的治疗。与此同时,除了已确定的环境疾病触发因素或修饰因素外,新的合作工作还揭示了与肠道微生物组组成部分的新关联。这项研究为探索肠脑轴开辟了一个令人兴奋的新前景,也有可能提供新的药理靶点和基于饮食的治疗方法。最后,随着大量信息的可用性和前所未有的计算机能力,基于人工智能(AI)的新一波研究正在蔓延。这些调查将产生统计上强大的预测模型,甚至在疾病临床表现明显之前几年就识别出处于危险中的个体。此外,使用语义表示和因果推理等方法,其中一些方法可以用生物医学术语解释,从而使它们可信并促进它们在临床环境中的实施。所有这些进步的共同特征是科学家之间以正式联盟、工作组或特别伙伴关系的形式进行多学科合作。这可能是现代科学的“秘密武器”,也是阻止、恢复和终结多发性硬化症的最佳策略。
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引用次数: 0
On observing the standards of descriptive epidemiology: Comment on the article by Ozturk et al. 观察描述性流行病学的标准:评Ozturk等人的文章。
IF 4.8 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-04-01 Epub Date: 2024-12-31 DOI: 10.1177/13524585241304969
Koray Tascilar
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引用次数: 0
Presence of slowly expanding lesions in multiple sclerosis predicts progressive demyelination within lesions and normal-appearing tissue over time. 多发性硬化症中出现缓慢扩张的病变预示着随着时间的推移,病变和正常组织内会出现进行性脱髓鞘。
IF 4.8 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-04-01 Epub Date: 2025-02-14 DOI: 10.1177/13524585251316519
Irene Vavasour, Colm Elliott, Douglas L Arnold, Laura Gaetano, David Clayton, Stefano Magon, Ulrike Bonati, Carrado Bernasconi, Anthony Traboulsee, Shannon Kolind

Background: Multiple sclerosis (MS) slowly expanding lesions (SELs) are defined on magnetic resonance imaging (MRI) as contiguous regions of pre-existing focal non-contrast-enhancing T2 lesions with constant and concentric local expansion on conventional T1-weighted and T2-weighted images. SELs are associated with an increased risk of disability progression.

Methods: Myelin-related changes detected using myelin water fraction (MWF) and magnetisation transfer ratio (MTR) in SELs and T2 lesions were measured over 192 weeks in participants with relapsing MS.

Results: In participants with SELs (SEL+), SELs (MWF: 0.12 ± 0.03, MTR: 33.1 ± 3.6 pu) showed reduced myelin measures at baseline compared to T2 lesions (MWF: 0.13 ± 0.02, MTR: 35.1 ± 2.4 pu). In participants without SELs (SEL-), T2 lesions had higher myelin measures (MWF: 0.15 ± 0.02, MTR: 36.2 ± 2.0 pu) compared to T2 lesions in SEL+. Over 4 years, only SELs showed decreases in MWF (-11.4%). The percentage of abnormal voxels within normal-appearing white matter was higher in SEL+ and increased over time (SEL+ MWF Week 0: 0.56%, Week 192: 0.98%; SEL- MWF Week 0: 0.13%, Week 192: 0.25%).

Conclusion: Our results indicate progressive focal and global demyelination in SEL+ participants and that the presence of SELs might be a biomarker for participants with ongoing diffuse or smouldering inflammation within the whole brain.

背景:多发性硬化症(MS)缓慢扩张病变(SELs)在磁共振成像(MRI)上被定义为预先存在的局灶性非增强T2病变的连续区域,在常规t1和T2加权图像上呈恒定和同心的局部扩张。sel与残疾进展的风险增加有关。方法:使用髓磷脂水分数(MWF)和磁化传递比(MTR)检测复发性ms患者在SELs和T2病变中的髓磷脂相关变化,为期192周。结果:在SELs (SEL+)患者中,SELs (MWF: 0.12±0.03,MTR: 33.1±3.6 pu)与T2病变(MWF: 0.13±0.02,MTR: 35.1±2.4 pu)相比,基线髓磷脂含量减少。在没有SELs (SEL-)的参与者中,与SEL+的T2病变相比,T2病变的髓磷脂测量值更高(MWF: 0.15±0.02,MTR: 36.2±2.0 pu)。超过4年,只有SELs显示MWF下降(-11.4%)。异常体素在正常白质内的比例在SEL+中较高,并且随着时间的推移而增加(SEL+ MWF第0周:0.56%,第192周:0.98%;SEL- MWF第0周:0.13%,第192周:0.25%)。结论:我们的研究结果表明,SEL+参与者的局灶性和全身性脱髓鞘进展性,并且SEL的存在可能是全脑持续弥漫性或阴燃性炎症参与者的生物标志物。
{"title":"Presence of slowly expanding lesions in multiple sclerosis predicts progressive demyelination within lesions and normal-appearing tissue over time.","authors":"Irene Vavasour, Colm Elliott, Douglas L Arnold, Laura Gaetano, David Clayton, Stefano Magon, Ulrike Bonati, Carrado Bernasconi, Anthony Traboulsee, Shannon Kolind","doi":"10.1177/13524585251316519","DOIUrl":"10.1177/13524585251316519","url":null,"abstract":"<p><strong>Background: </strong>Multiple sclerosis (MS) slowly expanding lesions (SELs) are defined on magnetic resonance imaging (MRI) as contiguous regions of pre-existing focal non-contrast-enhancing T2 lesions with constant and concentric local expansion on conventional T1-weighted and T2-weighted images. SELs are associated with an increased risk of disability progression.</p><p><strong>Methods: </strong>Myelin-related changes detected using myelin water fraction (MWF) and magnetisation transfer ratio (MTR) in SELs and T2 lesions were measured over 192 weeks in participants with relapsing MS.</p><p><strong>Results: </strong>In participants with SELs (SEL+), SELs (MWF: 0.12 ± 0.03, MTR: 33.1 ± 3.6 pu) showed reduced myelin measures at baseline compared to T2 lesions (MWF: 0.13 ± 0.02, MTR: 35.1 ± 2.4 pu). In participants without SELs (SEL-), T2 lesions had higher myelin measures (MWF: 0.15 ± 0.02, MTR: 36.2 ± 2.0 pu) compared to T2 lesions in SEL+. Over 4 years, only SELs showed decreases in MWF (-11.4%). The percentage of abnormal voxels within normal-appearing white matter was higher in SEL+ and increased over time (SEL+ MWF Week 0: 0.56%, Week 192: 0.98%; SEL- MWF Week 0: 0.13%, Week 192: 0.25%).</p><p><strong>Conclusion: </strong>Our results indicate progressive focal and global demyelination in SEL+ participants and that the presence of SELs might be a biomarker for participants with ongoing diffuse or smouldering inflammation within the whole brain.</p>","PeriodicalId":18874,"journal":{"name":"Multiple Sclerosis Journal","volume":" ","pages":"418-432"},"PeriodicalIF":4.8,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11956371/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143414538","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Testing for myelin oligodendrocyte glycoprotein antibodies: Who, what, where, when, why, and how. 髓鞘少突胶质细胞糖蛋白抗体的检测:何人、何事、何地、何时、为何及如何。
IF 4.8 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-04-01 Epub Date: 2025-01-24 DOI: 10.1177/13524585251313744
Adrian Budhram, Eoin P Flanagan

Testing for myelin oligodendrocyte glycoprotein immunoglobulin G antibodies (MOG-IgG) is essential to the diagnosis of MOG antibody-associated disease (MOGAD). Due to its central role in the evaluation of suspected inflammatory demyelinating disease, the last 5 years has been marked by an abundance of research into MOG-IgG testing ranging from appropriate patient selection, to assay performance, to utility of serum titers as well as cerebrospinal fluid (CSF) testing. In this review, we synthesize current knowledge pertaining to the "who, what, where, when, why, and how" of MOG-IgG testing, with the aim of facilitating accurate MOGAD diagnosis in clinical practice.

髓鞘少突胶质细胞糖蛋白免疫球蛋白G抗体(MOG- igg)检测对MOG抗体相关疾病(MOGAD)的诊断至关重要。由于MOG-IgG在评估疑似炎症性脱髓鞘疾病中的核心作用,过去5年对MOG-IgG检测进行了大量研究,从适当的患者选择到检测性能,再到血清滴度和脑脊液(CSF)检测的应用。在这篇综述中,我们综合了目前关于MOG-IgG检测的“谁,什么,何地,何时,为什么和如何”的知识,目的是促进临床实践中准确诊断MOGAD。
{"title":"Testing for myelin oligodendrocyte glycoprotein antibodies: Who, what, where, when, why, and how.","authors":"Adrian Budhram, Eoin P Flanagan","doi":"10.1177/13524585251313744","DOIUrl":"10.1177/13524585251313744","url":null,"abstract":"<p><p>Testing for myelin oligodendrocyte glycoprotein immunoglobulin G antibodies (MOG-IgG) is essential to the diagnosis of MOG antibody-associated disease (MOGAD). Due to its central role in the evaluation of suspected inflammatory demyelinating disease, the last 5 years has been marked by an abundance of research into MOG-IgG testing ranging from appropriate patient selection, to assay performance, to utility of serum titers as well as cerebrospinal fluid (CSF) testing. In this review, we synthesize current knowledge pertaining to the \"who, what, where, when, why, and how\" of MOG-IgG testing, with the aim of facilitating accurate MOGAD diagnosis in clinical practice.</p>","PeriodicalId":18874,"journal":{"name":"Multiple Sclerosis Journal","volume":" ","pages":"505-511"},"PeriodicalIF":4.8,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12008469/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143040319","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Quality of life is decreased in persons with relapsing-remitting multiple sclerosis experiencing progression independent of relapse activity. 复发缓解型多发性硬化症患者的生活质量下降,经历独立于复发活动的进展。
IF 4.8 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-04-01 Epub Date: 2025-02-18 DOI: 10.1177/13524585251318516
Sarah Lindberg, Sofia Sandgren, Markus Axelsson, Igal Rosenstein, Jan Lycke, Lenka Novakova

Introduction: Reduced quality of life (QoL) is an early feature of multiple sclerosis (MS). The effect of progression independent of relapse activity (PIRA) on QoL is poorly investigated.

Objective: To assess the impact of PIRA on QoL using patient-reported outcome measures (PROMs).

Methods: In a prospective observational study, 125 newly diagnosed persons with relapsing-remitting MS (PwRRMS) were assessed over 5 years with: EuroQoL-5-Dimension-3-level (EQ-5D-3L), EQ-visual-analogous-scale (EQ-VAS) and 29-item-MS-Impact-Scale (MSIS-29). PwRRMS were dichotomized: PIRA (worsening of expanded disability status scale (EDSS), timed-25-foot-walk or 9-hole-peg-test, independent of relapses) versus non-PIRA. PwRRMS were compared at baseline, year 5 (y5) and delta values (baseline scores subtracted from y5 scores) and annually using linear-mixed-effects-models.

Results: At y5, 19.2% had PIRA. PIRA versus non-PIRA PwRRMS were older (p < 0.001). At y5 PIRA PwRRMS had lower EQ-5D-3L (p = 0.001), higher MSIS-29-PHYS (p < 0.001), delta values showed lower EQ-5D-3L (p < 0.001) and EQ-VAS (p = 0.010), higher MSIS-29-PHYS (p = 0.004) and MSIS-29-PSYCH (p = 0.036). Linear-mixed-effects-models showed that, compared to PIRA, non-PIRA PwRRMS had an improvement in QoL: EQ-5D-3L: β = 0.039, p < 0.001; EQ-VAS: β = 2.401, p < 0.001; MSIS-29-PHYS: β = -0.107, p < 0.001; MSIS-29-PSYCH, β = -0.115, p < 0.001, during the 5-year study period.

Conclusion: Deteriorating QoL in the early course of relapsing-remitting multiple sclerosis (RRMS) is strongly associated with PIRA. Our results suggest that QoL PROMs should be monitored and recognized as an important aspect of progression.

生活质量下降(QoL)是多发性硬化症(MS)的早期特征。进展独立于复发活动(PIRA)对生活质量的影响研究甚少。目的:采用患者报告的预后指标(PROMs)评估PIRA对生活质量的影响。方法:在一项前瞻性观察研究中,125名新诊断的复发-缓解型多发性硬化症(PwRRMS)患者在5年内进行了评估:euroqol -5维度-3水平(EQ-5D-3L), eq -视觉模拟量表(EQ-VAS)和29项MS-影响量表(MSIS-29)。PwRRMS被分为两类:ppira(扩展残疾状态量表恶化(EDSS),定时25英尺步行或9孔测试,独立于复发)与非ppira。PwRRMS在基线,5年(5岁)和delta值(基线分数减去5岁分数)进行比较,并每年使用线性混合效应模型。结果:5岁时,有19.2%的患者有PIRA。与非PwRRMS相比,PwRRMS年龄更大(p < 0.001)。PwRRMS在5岁时EQ-5D-3L降低(p = 0.001), MSIS-29-PHYS升高(p < 0.001), δ值显示EQ-5D-3L和EQ-VAS降低(p = 0.010), MSIS-29-PHYS升高(p = 0.004)和MSIS-29-PSYCH升高(p = 0.036)。线性混合效应模型显示,与PIRA相比,非PIRA PwRRMS的生活质量有所改善:EQ-5D-3L: β = 0.039, p < 0.001;EQ-VAS: β = 2.401, p < 0.001;MSIS-29-PHYS: β = -0.107, p < 0.001;MSIS-29-PSYCH, β = -0.115, p < 0.001,在5年的研究期间。结论:复发缓解型多发性硬化症(RRMS)早期生活质量恶化与PIRA密切相关。我们的研究结果表明,应该监测并认识到生活质量问题是进展的一个重要方面。
{"title":"Quality of life is decreased in persons with relapsing-remitting multiple sclerosis experiencing progression independent of relapse activity.","authors":"Sarah Lindberg, Sofia Sandgren, Markus Axelsson, Igal Rosenstein, Jan Lycke, Lenka Novakova","doi":"10.1177/13524585251318516","DOIUrl":"10.1177/13524585251318516","url":null,"abstract":"<p><strong>Introduction: </strong>Reduced quality of life (QoL) is an early feature of multiple sclerosis (MS). The effect of progression independent of relapse activity (PIRA) on QoL is poorly investigated.</p><p><strong>Objective: </strong>To assess the impact of PIRA on QoL using patient-reported outcome measures (PROMs).</p><p><strong>Methods: </strong>In a prospective observational study, 125 newly diagnosed persons with relapsing-remitting MS (PwRRMS) were assessed over 5 years with: EuroQoL-5-Dimension-3-level (EQ-5D-3L), EQ-visual-analogous-scale (EQ-VAS) and 29-item-MS-Impact-Scale (MSIS-29). PwRRMS were dichotomized: PIRA (worsening of expanded disability status scale (EDSS), timed-25-foot-walk or 9-hole-peg-test, independent of relapses) versus non-PIRA. PwRRMS were compared at baseline, year 5 (y5) and delta values (baseline scores subtracted from y5 scores) and annually using linear-mixed-effects-models.</p><p><strong>Results: </strong>At y5, 19.2% had PIRA. PIRA versus non-PIRA PwRRMS were older (<i>p</i> < 0.001). At y5 PIRA PwRRMS had lower EQ-5D-3L (<i>p</i> = 0.001), higher MSIS-29-PHYS (<i>p</i> < 0.001), delta values showed lower EQ-5D-3L (<i>p</i> < 0.001) and EQ-VAS (<i>p</i> = 0.010), higher MSIS-29-PHYS (<i>p</i> = 0.004) and MSIS-29-PSYCH (<i>p</i> = 0.036). Linear-mixed-effects-models showed that, compared to PIRA, non-PIRA PwRRMS had an improvement in QoL: EQ-5D-3L: β = 0.039, <i>p</i> < 0.001; EQ-VAS: β = 2.401, <i>p</i> < 0.001; MSIS-29-PHYS: β = -0.107, <i>p</i> < 0.001; MSIS-29-PSYCH, β = -0.115, <i>p</i> < 0.001, during the 5-year study period.</p><p><strong>Conclusion: </strong>Deteriorating QoL in the early course of relapsing-remitting multiple sclerosis (RRMS) is strongly associated with PIRA. Our results suggest that QoL PROMs should be monitored and recognized as an important aspect of progression.</p>","PeriodicalId":18874,"journal":{"name":"Multiple Sclerosis Journal","volume":" ","pages":"548-557"},"PeriodicalIF":4.8,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12008467/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143441139","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
We need to engage representative patients' community rather than "expert patients" to increase impact of research in the era of personalized medicine: No. 在个性化医疗时代,我们需要让有代表性的患者社区而不是“专家患者”参与进来,以增加研究的影响:不。
IF 4.8 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-04-01 Epub Date: 2025-02-11 DOI: 10.1177/13524585251315354
Alberto Gajofatto, Michela Rimondini
{"title":"We need to engage representative patients' community rather than \"expert patients\" to increase impact of research in the era of personalized medicine: No.","authors":"Alberto Gajofatto, Michela Rimondini","doi":"10.1177/13524585251315354","DOIUrl":"10.1177/13524585251315354","url":null,"abstract":"","PeriodicalId":18874,"journal":{"name":"Multiple Sclerosis Journal","volume":" ","pages":"393-395"},"PeriodicalIF":4.8,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143391330","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Uncovering alternative diagnoses in patients with clinical syndromes suggestive of multiple sclerosis: A transversal study from the prospective Barcelona CIS cohort. 揭示临床综合征提示多发性硬化患者的替代诊断:一项来自前瞻性巴塞罗那CIS队列的横向研究。
IF 4.8 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-04-01 Epub Date: 2025-02-05 DOI: 10.1177/13524585251314749
Andreu Vilaseca, Mar Tintoré, Pere Carbonell-Mirabent, Marta Rodríguez-Barranco, Mª Jesús Arévalo, Helena Ariño, Cristina Auger, Luca Bollo, René Carvajal, Joaquín Castilló, Alvaro Cobo-Calvo, Manuel Comabella, Victoria Fernández, Ingrid Galan, Luciana Midaglia, Neus Mongay-Ochoa, Carlos Nos, Susana Otero-Romero, Agustín Pappolla, Jordi Rio, Breogan Rodriguez-Acevedo, Jaume Sastre-Garriga, Sofía Sceppacuercia, Paula Tagliani, Carmen Tur, Angela Vidal-Jordana, Javier Villacieros-Álvarez, Ana Zabalza, Àlex Rovira, Xavier Montalban, Georgina Arrambide

Background: It is essential to exclude alternative diagnoses to diagnose multiple sclerosis (MS). However, detailed descriptions of alternative diagnoses in patients with suspected MS presenting with clinically isolated syndrome (CIS) are limited.

Objectives: To describe alternative diagnoses in patients presenting with CIS suggestive of MS.

Methods: We conducted a descriptive analysis of patients from the Barcelona CIS cohort including subjects under 50 years of age with a CIS suggestive of MS but later diagnosed with conditions other than MS. We collected clinical, biological, and radiological data, and described the alternative etiologies identified.

Results: Among 1468 patients in the Barcelona CIS cohort, 100 (6.8%) were diagnosed with an alternative condition. The most common neurological syndrome was optic neuritis (43.0%). Four patients (4.0%) had inflammatory-demyelinating lesions in at least two typical MS topographies on baseline magnetic resonance imaging (MRI), and 2 (2.0%) met the 2017 McDonald MS criteria. The most common etiologies were immune-mediated diseases (42.0%), especially MOGAD, followed by functional neurological disorders (15.0%) and vascular disease (10.0%).

Conclusion: The range of alternative diagnoses encountered during the MS diagnostic process highlights the need to rule out better explanations than MS. However, current MS diagnostic criteria effectively identify patients without MS in this context.

背景:排除其他诊断诊断多发性硬化症(MS)是必要的。然而,对以临床孤立综合征(CIS)为表现的疑似MS患者的替代诊断的详细描述是有限的。目的:描述提示多发性硬化症的CIS患者的其他诊断方法:我们对来自巴塞罗那CIS队列的患者进行了描述性分析,包括年龄在50岁以下、提示多发性硬化症但后来被诊断为非MS的患者。我们收集了临床、生物学和放射学数据,并描述了确定的其他病因。结果:在Barcelona CIS队列的1468例患者中,100例(6.8%)被诊断为另一种疾病。最常见的神经系统综合征为视神经炎(43.0%)。4名患者(4.0%)在基线磁共振成像(MRI)上至少有两种典型MS地形出现炎症-脱髓鞘病变,2名患者(2.0%)符合2017年麦当劳MS标准。最常见的病因是免疫介导性疾病(42.0%),尤其是MOGAD,其次是功能性神经系统疾病(15.0%)和血管疾病(10.0%)。结论:在多发性硬化症诊断过程中遇到的各种替代诊断强调了排除比多发性硬化症更好的解释的必要性。然而,在这种情况下,目前的多发性硬化症诊断标准有效地识别了非多发性硬化症患者。
{"title":"Uncovering alternative diagnoses in patients with clinical syndromes suggestive of multiple sclerosis: A transversal study from the prospective Barcelona CIS cohort.","authors":"Andreu Vilaseca, Mar Tintoré, Pere Carbonell-Mirabent, Marta Rodríguez-Barranco, Mª Jesús Arévalo, Helena Ariño, Cristina Auger, Luca Bollo, René Carvajal, Joaquín Castilló, Alvaro Cobo-Calvo, Manuel Comabella, Victoria Fernández, Ingrid Galan, Luciana Midaglia, Neus Mongay-Ochoa, Carlos Nos, Susana Otero-Romero, Agustín Pappolla, Jordi Rio, Breogan Rodriguez-Acevedo, Jaume Sastre-Garriga, Sofía Sceppacuercia, Paula Tagliani, Carmen Tur, Angela Vidal-Jordana, Javier Villacieros-Álvarez, Ana Zabalza, Àlex Rovira, Xavier Montalban, Georgina Arrambide","doi":"10.1177/13524585251314749","DOIUrl":"10.1177/13524585251314749","url":null,"abstract":"<p><strong>Background: </strong>It is essential to exclude alternative diagnoses to diagnose multiple sclerosis (MS). However, detailed descriptions of alternative diagnoses in patients with suspected MS presenting with clinically isolated syndrome (CIS) are limited.</p><p><strong>Objectives: </strong>To describe alternative diagnoses in patients presenting with CIS suggestive of MS.</p><p><strong>Methods: </strong>We conducted a descriptive analysis of patients from the Barcelona CIS cohort including subjects under 50 years of age with a CIS suggestive of MS but later diagnosed with conditions other than MS. We collected clinical, biological, and radiological data, and described the alternative etiologies identified.</p><p><strong>Results: </strong>Among 1468 patients in the Barcelona CIS cohort, 100 (6.8%) were diagnosed with an alternative condition. The most common neurological syndrome was optic neuritis (43.0%). Four patients (4.0%) had inflammatory-demyelinating lesions in at least two typical MS topographies on baseline magnetic resonance imaging (MRI), and 2 (2.0%) met the 2017 McDonald MS criteria. The most common etiologies were immune-mediated diseases (42.0%), especially MOGAD, followed by functional neurological disorders (15.0%) and vascular disease (10.0%).</p><p><strong>Conclusion: </strong>The range of alternative diagnoses encountered during the MS diagnostic process highlights the need to rule out better explanations than MS. However, current MS diagnostic criteria effectively identify patients without MS in this context.</p>","PeriodicalId":18874,"journal":{"name":"Multiple Sclerosis Journal","volume":" ","pages":"408-417"},"PeriodicalIF":4.8,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143189753","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Navigating pregnancy in women with NMOSD in the monoclonal antibody era. 单克隆抗体时代NMOSD妇女妊娠导航
IF 4.8 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-04-01 Epub Date: 2025-01-22 DOI: 10.1177/13524585241310376
Wallace J Brownlee, Ruth Dobson
{"title":"Navigating pregnancy in women with NMOSD in the monoclonal antibody era.","authors":"Wallace J Brownlee, Ruth Dobson","doi":"10.1177/13524585241310376","DOIUrl":"10.1177/13524585241310376","url":null,"abstract":"","PeriodicalId":18874,"journal":{"name":"Multiple Sclerosis Journal","volume":" ","pages":"617-618"},"PeriodicalIF":4.8,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143024137","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
期刊
Multiple Sclerosis Journal
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