European Journal of Paediatric Neurology最新文献_第4页

Impact of non-seizure outcomes and caregiver priorities for young people with severe neurodevelopmental encephalopathy with or without epilepsy: A community survey 对伴有或不伴有癫痫的严重神经发育性脑病的年轻人的非癫痫结局和护理优先级的影响：一项社区调查

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY

European Journal of Paediatric Neurology

Pub Date : 2025-11-01 Epub Date: 2025-10-01 DOI: 10.1016/j.ejpn.2025.09.005

Anne T. Berg , Mary Wojnaroski , Natasha N. Ludwig , Rebecca Hommer , Kelly Muzyczka , Sara Te , Gabrielle Conecker , JayEtta Hecker , Gerry Nesbitt , Jenny Downs

Objectives

This study assessed impacts of non-seizure outcomes and caregiver priorities for improvement in individuals with severe neurodevelopmental encephalopathy with or without epilepsy (SNDE ^{± E}).

Methods

In an online survey of parents recruited from several patient advocacy groups, parents rated the impacts of 17 non-seizure outcome domains on their children and identified their top three priority domains for improvement. Bivariate and stratified analyses compared impacts and priorities by burden of severe functional impairments, age, and diagnoses.

Results

Of 267 participants, 149 (56 %) were female (median [interquartile range] age: 8.7y [4.2y – 14.7y) and 169 (63 %) had epilepsy diagnoses. Profound impairments were reported for mobility (N = 142, 53 %), communication (N = 208, 78 %), eating (N = 100, 37 %), and hand use (N = 93, 35 %). Expressive communication had overwhelming or significantly negative impacts in 217 (83 %) followed by receptive communication (N = 185, 70 %). Parents identified expressive communication as a top (N = 211, 79 %) priority for improvement. The impact and prioritization of expressive communication were independent of other functional impairments, age, and other diagnoses. For those with epilepsy, relative to non-seizure outcomes, seizures were rated as more important by 35 % and of similar or less importance by 65 %; this strongly depended on recency of the last seizure (p < 0.0001).

Conclusions

Improvement in expressive communication is a top priority in the SNDEs ^{± E} and could be a valuable non-seizure outcome in future therapeutic trials for these rare diseases.

目的：本研究评估伴有或不伴有癫痫（SNDE±E）的严重神经发育性脑病患者的非癫痫结局和护理优先级对改善的影响。方法：在一项从几个患者倡导组织招募的父母的在线调查中，父母评估了17个非癫痫发作结果域对他们孩子的影响，并确定了他们最需要改善的三个优先领域。双变量和分层分析比较了严重功能障碍负担、年龄和诊断的影响和优先级。结果：267名参与者中，149名（56%）为女性（年龄中位数：8.7岁[4.2岁- 14.7岁]），169名（63%）患有癫痫诊断。据报道，在行动能力（N = 142, 53%）、沟通（N = 208, 78%）、进食（N = 100, 37%）和手部使用（N = 93, 35%）方面存在严重障碍。表达性沟通的负面影响有217个（83%），其次是接受性沟通（185个，70%）。家长认为表达性沟通是最重要的（N = 211, 79%）。表达性沟通的影响和优先级与其他功能障碍、年龄和其他诊断无关。对于癫痫患者，相对于非癫痫发作的结果，癫痫发作被评为更重要的比例为35%，同等或不那么重要的比例为65%；结论：表达沟通能力的改善是SNDEs±E患者的首要任务，并且可能是未来这些罕见疾病治疗试验中有价值的非癫痫结果。

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引用次数: 0

Fatigue, depression, and health-related quality of life in pediatric-onset multiple sclerosis: A comparative study from a tertiary care center 儿童多发性硬化症患者的疲劳、抑郁和健康相关生活质量：一项来自三级保健中心的比较研究

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY

European Journal of Paediatric Neurology

Pub Date : 2025-11-01 Epub Date: 2025-10-24 DOI: 10.1016/j.ejpn.2025.10.012

Nazlı Balcan Karaca , Salih Akbaş , Müge Kuzu Kumcu , Ercan Demir , Kıvılcım Gücüyener

Background

Fatigue, depression, and decreased health-related quality of life (HRQoL) are commonly reported among patients with pediatric-onset multiple sclerosis (POMS). However, their interplay and distinct manifestations remain insufficiently understood.

Objective

This study aimed to assess fatigue, depressive symptoms, and HRQoL in a well-characterized cohort of POMS patients in comparison to age- and sex-matched healthy controls (HCs).

Methods

Participants completed the Fatigue Severity Scale (FSS), the 36-Item Short Form Survey (SF-36), and the Revised Children's Anxiety and Depression Scale (RCADS). Comparative analyses between groups were conducted using standard parametric and non-parametric statistical tests.

Results

A total of 41 patients with POMS (mean age: 17.98 ± 1.94 years; 75.6 % female) and 35 healthy controls (mean age: 17.43 ± 1.17 years; 60 % female) were enrolled. Fatigue was significantly more prevalent and severe in the POMS group, as evidenced by higher FSS scores (p = 0.006) and increased fatigue rates (22 % vs. 2.8 %, p = 0.026). No significant between-group differences were found in depression or anxiety scores (p > 0.05). In the SF-36, POMS patients exhibited significantly lower vitality (p = 0.009) and general health scores (p = 0.001), whereas other domains remained comparable.

Conclusion

Fatigue and reduced perceptions of vitality and general health are prominent concerns in POMS, even in the absence of overt depressive or anxiety symptoms. These findings underscore the need for early integration of psychological assessments and fatigue-specific interventions within multidisciplinary care to enhance long-term quality of life.

背景：疲劳、抑郁和健康相关生活质量（HRQoL）下降是儿科起病多发性硬化症（POMS）患者中常见的报道。然而，它们的相互作用和不同的表现仍然没有得到充分的了解。目的：本研究旨在评估POMS患者的疲劳、抑郁症状和HRQoL，并将其与年龄和性别匹配的健康对照组（hc）进行比较。方法：参与者完成疲劳严重程度量表（FSS）、36项简短表格调查（SF-36）和修订儿童焦虑和抑郁量表（RCADS）。采用标准参数和非参数统计检验进行组间比较分析。结果：共纳入41例POMS患者（平均年龄：17.98±1.94岁，女性占75.6%）和35例健康对照（平均年龄：17.43±1.17岁，女性占60%）。疲劳在POMS组中更为普遍和严重，FSS评分更高（p = 0.006），疲劳率增加（22%对2.8%,p = 0.026）。抑郁、焦虑评分组间差异无统计学意义（p < 0.05）。在SF-36中，POMS患者表现出明显较低的活力（p = 0.009）和一般健康得分（p = 0.001），而其他领域保持可比性。结论：即使在没有明显抑郁或焦虑症状的情况下，疲劳和活力和一般健康状况的降低也是POMS的突出问题。这些发现强调了在多学科护理中早期整合心理评估和疲劳特异性干预的必要性，以提高长期生活质量。

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引用次数: 0

Pediatric varicella zoster virus associated arterial ischemic stroke – A post-pandemic rise in incidence in Denmark 儿童水痘带状疱疹病毒相关动脉缺血性中风-丹麦大流行后发病率上升

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY

European Journal of Paediatric Neurology

Pub Date : 2025-11-01 Epub Date: 2025-10-22 DOI: 10.1016/j.ejpn.2025.10.010

Ann-Louise Esserlind , Lisbeth Samsø Schmidt , Gitte Rønde , Maria Miranda , Lotte Jensen , Julie Brix Bindslev , Alfred Peter Born , Nadja Hawwa Vissing , Frederik Trier Møller , Jacob Elskær Mollerup , Malene Landbo Børresen

Background

Varicella Zoster Virus (VZV) associated Acute Ischemic Stroke (AIS) in pediatric populations is a rare and potentially underrecognized condition. The global COVID-19 pandemic has led to significant changes in infectious disease patterns, including possible impacts on the incidence of VZV infections. This study describes the incidence of VZV associated AIS in Denmark from 2013 to 2023 using national surveillance data from Denmark. Furthermore, the study investigates a cluster of VZV-associated AIS cases identified over a 10-month period in 2022 in a geographically confined area north-west of Copenhagen, Denmark, following the lifting of COVID-19 restrictions.

Methods

We analyzed national surveillance data on cerebral spinal fluid samples and VZV and AIS diagnoses in nationwide patient registries to estimate the incidence of VZV associated AIS pre, during and post- COVID era in Denmark. To evaluate the clinical disease severity and risk factors and outcome in the post-COVID era we conducted a retrospective case series analysis of four pediatric patients diagnosed with VZV-associated AIS from Greater Copenhagen.

Results

Our analysis revealed a notable clustering of VZV-associated AIS cases nationwide, suggesting an increased incidence in Denmark after COVID-19 restrictions were lifted. Clinical presentations of our cases were comparable with the pre-COVID era and did not suggest a more virulent VZV subtype.

Conclusion

The observed cluster of pediatric VZV-associated AIS cases post-COVID-19 restrictions and national survey data showed a rise in incidence which could reflect an increase in VZV disease due to diminished herd immunity post-COVID 19. The clinical presentations of VZV associated AIS were in keeping with previous reports and the clinical presentations were both unspecific and transient in character.

背景：水痘带状疱疹病毒（VZV）相关的急性缺血性脑卒中（AIS）在儿科人群中是一种罕见且可能未被充分认识的疾病。全球COVID-19大流行导致传染病模式发生重大变化，包括对VZV感染发生率的可能影响。本研究利用丹麦国家监测数据描述了2013年至2023年丹麦VZV相关AIS的发病率。此外，该研究还调查了在解除COVID-19限制后，于2022年在丹麦哥本哈根西北部的一个地理上受限的地区，在10个月内发现的与vzv相关的一组AIS病例。方法分析丹麦全国患者登记的脑脊液样本、VZV和AIS诊断的国家监测数据，估计丹麦VZV相关AIS在COVID之前、期间和之后的发病率。为了评估后covid时代的临床疾病严重程度、危险因素和结局，我们对来自大哥本哈根的4例被诊断为vzv相关AIS的儿科患者进行了回顾性病例系列分析。结果我们的分析显示，全国范围内与vzv相关的AIS病例明显聚集，表明丹麦在COVID-19限制解除后发病率增加。我们病例的临床表现与covid前时期相当，没有显示出更强毒性的VZV亚型。结论观察到的儿童VZV相关AIS病例群在covid -19限制和全国调查数据中显示发病率上升，这可能反映了covid -19后群体免疫力下降导致VZV疾病增加。VZV相关AIS的临床表现与先前的报道一致，临床表现不特异性和短暂性。

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引用次数: 0

The ins and outs of glycopyrronium treatment for paediatric drooling: exploring the treatment journey using real-world data glycopyronium治疗小儿流口水的来龙去脉：利用真实世界的数据探索治疗之旅

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY

European Journal of Paediatric Neurology

Pub Date : 2025-11-01 Epub Date: 2025-09-07 DOI: 10.1016/j.ejpn.2025.09.001

Lynn B. Orriëns , Karen van Hulst , Joyce M. Geelen , Frank J.A. van den Hoogen , Anne T.M. Dittrich , Michèl A.A.P. Willemsen , Corrie E. Erasmus

Introduction

Anticholinergic medication is an important treatment option for paediatric drooling. We explored the practical application of glycopyrronium, an anticholinergic medicine registered for the paediatric population, focusing on treatment patterns, effectiveness and impact, adverse drug reactions (ADRs), and caregiver satisfaction.

Methods

A longitudinal, observational study was performed, including 22 children (3–18 years) newly treated with glycopyrronium for anterior and/or posterior drooling in our tertiary children's hospital between November 2020 and February 2024. We assessed a verbal numerical rating scale for drooling severity, Drooling Severity and Frequency Scale (DSFS), Measure of Performance and Satisfaction for Saliva Control (MPS), prevalence of ADRs, and dosage adjustments.

Results

At baseline, drooling was typically profuse and occurred frequently to constantly. The majority of children (86 %) took glycopyrronium thrice daily, with dose titration tailored to each child and medication primarily administered with food (56 %). A clinically important reduction in DSFS was observed in 53 % at the first follow-up appointment. Correspondingly, median MPS scores increased from 0.0 at baseline to 5.6 at follow-up (p < .001) (0 = not dry; 10 = perfectly dry), indicating improved saliva control in situations impacted by drooling. ADRs were reported in 73 %, leading to treatment cessation in 36 %, primarily due to gastrointestinal issues and behavioural changes.

Conclusions

Our findings confirm the applicability of glycopyrronium under real-world conditions, complementing results from studies with more rigid designs. Insights into inter-individual differences in dose titration, timing of medication administration, and changes in effect or ADRs over time highlight the relevance of a tailored treatment approach.

抗胆碱能药物是治疗小儿流口水的重要选择。我们探讨了glycopyronium的实际应用，这是一种注册用于儿科人群的抗胆碱能药物，重点关注治疗模式、有效性和影响、药物不良反应（adr）和护理人员满意度。方法对2020年11月至2024年2月在我院三级儿童医院新接受glycopyronium治疗前/后流口水的22例儿童（3-18岁）进行纵向观察研究。我们评估了流口水严重程度的口头数字评定量表、流口水严重程度和频率量表（DSFS）、唾液控制的表现和满意度测量（MPS）、不良反应的发生率和剂量调整。结果基线时，流口水多，频繁至持续发生。大多数儿童（86%）每天服用三次吡氯硝铵，剂量滴定适合每个儿童，药物主要与食物一起给药（56%）。在第一次随访预约时，DSFS的临床重要降低为53%。相应的，MPS评分中位数从基线时的0.0增加到随访时的5.6 (p < .001)（0 =不干；10 =完全干），表明在流口水影响的情况下，唾液控制得到改善。73%的患者报告了不良反应，36%的患者停止治疗，主要是由于胃肠道问题和行为改变。结论本研究结果证实了glycopyronium在实际条件下的适用性，补充了更严格设计的研究结果。对剂量滴定、给药时间、效果或不良反应随时间变化的个体差异的见解，突出了量身定制治疗方法的相关性。

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引用次数: 0

Treatment response in children with relapsing MOG-antibody associated disease 复发性mog抗体相关疾病患儿的治疗反应

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY

European Journal of Paediatric Neurology

Pub Date : 2025-11-01 Epub Date: 2025-10-10 DOI: 10.1016/j.ejpn.2025.10.002

Eva-Maria Wendel , John J. Chen , Annikki Bertolini , Astrid Blaschek , Fabienne Brilot , Russell C. Dale , Kumaran Deiva , Eoin P. Flanagan , Thomas Foiadelli , Laetitia Giorgi , Saif Huda , Michael Karenfort , Rachel Kneen , Vanessa Lee , Ming Lim , Sara Mariotto , Hadas Meirson , Maha Z. Mohammed , Margherita Nosadini , Sudarshini Ramanathan , Kevin Rostasy

Background

Data regarding treatment in pediatric relapsing MOGAD are limited.

Objective

To evaluate response of intravenous immunoglobulin (IVIG) compared to other therapies in relapsing pediatric MOGAD.

Methods

In this retrospective multicenter study, children with MOGAD were recruited from different medical centers. Inclusion criteria encompassed: age <18 years, MOGAD diagnosis, relapsing disease course, >6 months of maintenance treatment and >12 months follow-up.

Results

Seventy children with relapsing MOGAD were stratified into two groups. The first group received IVIG alone (n = 23), IVIG preceded by (n = 16) or in combination with other immunomodulating therapies (IMT) (n = 7). The second group received mycophenolate mofetil, azathioprine, rituximab, or other IMTs (n = 24). 13 % (6/46) of patients with IVIG relapsed in the first year, compared to 33 % (8/24) in the IMT group (relative risk 0.70, 95 % CI 0.53 to 0.99, p = 0.061). Annual relapse rate (ARR) was decreased under therapy compared to pre-treatment in both groups (IVIG: p < 0.001; other IMTs: p = 0.006). ARR was lower in the IVIG group (p = 0.040) in addition to a reduced risk of an early relapse compared to the other IMT group (hazard ratio 0.36, 95 % CI 0.15 to 0.87, p = 0.023).

Conclusion

Our study supports monthly IVIG as maintenance therapy in children after the second MOGAD episode.

背景：关于儿童复发性MOGAD治疗的数据有限。目的：评价静脉注射免疫球蛋白（IVIG）治疗小儿复发性MOGAD的疗效。方法：在这项回顾性多中心研究中，从不同的医疗中心招募了患有MOGAD的儿童。纳入标准包括：年龄6个月维持治疗和>12个月随访。结果：70例复发性MOGAD患儿分为两组。第一组仅接受IVIG治疗（n = 23）， IVIG治疗前（n = 16）或联合其他免疫调节疗法（IMT）治疗（n = 7）。第二组接受霉酚酸酯、硫唑嘌呤、利妥昔单抗或其他imt治疗（n = 24）。13%（6/46）的IVIG患者在第一年复发，而IMT组为33%(8/24)（相对危险度0.70,95% CI 0.53 ~ 0.99, p = 0.061）。与治疗前相比，治疗后两组的年复发率（ARR）均有所下降（IVIG: p）。结论：我们的研究支持每月IVIG作为儿童第二次MOGAD发作后的维持治疗。

{"title":"Treatment response in children with relapsing MOG-antibody associated disease","authors":"Eva-Maria Wendel , John J. Chen , Annikki Bertolini , Astrid Blaschek , Fabienne Brilot , Russell C. Dale , Kumaran Deiva , Eoin P. Flanagan , Thomas Foiadelli , Laetitia Giorgi , Saif Huda , Michael Karenfort , Rachel Kneen , Vanessa Lee , Ming Lim , Sara Mariotto , Hadas Meirson , Maha Z. Mohammed , Margherita Nosadini , Sudarshini Ramanathan , Kevin Rostasy","doi":"10.1016/j.ejpn.2025.10.002","DOIUrl":"10.1016/j.ejpn.2025.10.002","url":null,"abstract":"<div><h3>Background</h3><div>Data regarding treatment in pediatric relapsing MOGAD are limited.</div></div><div><h3>Objective</h3><div>To evaluate response of intravenous immunoglobulin (IVIG) compared to other therapies in relapsing pediatric MOGAD.</div></div><div><h3>Methods</h3><div>In this retrospective multicenter study, children with MOGAD were recruited from different medical centers. Inclusion criteria encompassed: age <18 years, MOGAD diagnosis, relapsing disease course, >6 months of maintenance treatment and >12 months follow-up.</div></div><div><h3>Results</h3><div>Seventy children with relapsing MOGAD were stratified into two groups. The first group received IVIG alone (n = 23), IVIG preceded by (n = 16) or in combination with other immunomodulating therapies (IMT) (n = 7). The second group received mycophenolate mofetil, azathioprine, rituximab, or other IMTs (n = 24). 13 % (6/46) of patients with IVIG relapsed in the first year, compared to 33 % (8/24) in the IMT group (relative risk 0.70, 95 % CI 0.53 to 0.99, p = 0.061). Annual relapse rate (ARR) was decreased under therapy compared to pre-treatment in both groups (IVIG: p < 0.001; other IMTs: p = 0.006). ARR was lower in the IVIG group (p = 0.040) in addition to a reduced risk of an early relapse compared to the other IMT group (hazard ratio 0.36, 95 % CI 0.15 to 0.87, p = 0.023).</div></div><div><h3>Conclusion</h3><div>Our study supports monthly IVIG as maintenance therapy in children after the second MOGAD episode.</div></div>","PeriodicalId":50481,"journal":{"name":"European Journal of Paediatric Neurology","volume":"59 ","pages":"Pages 45-51"},"PeriodicalIF":2.3,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145304449","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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

Value of creatine kinase and creatinine as biomarkers in nusinersen-treated children with spinal muscular atrophy 肌酸激酶和肌酐作为生物标志物在nusinsen治疗的脊髓性肌萎缩症儿童中的价值。

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY

European Journal of Paediatric Neurology

Pub Date : 2025-11-01 Epub Date: 2025-10-03 DOI: 10.1016/j.ejpn.2025.10.001

Jielu Ren , Yicheng Yu , Xinli Zou , Yijie Feng, Danhui Zhu, Yue Yan, Liya Jiang, Jianing Jin, Siyi Huang, Feng Gao, Shanshan Mao

Background

The search for convenient and effective biomarkers is a critical and pressing need for spinal muscular atrophy (SMA) in the era of disease-modifying treatment.

Methods

Data from 65 SMA children treated with nusinersen and followed up for 18 months were retrospectively collected. Motor function was assessed at baseline, 6, 10, 14 and 18 months using the Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP-INTEND), the Hammersmith Functional Motor Scale Expanded (HFMSE), and the Revised Upper Limb Module (RULM). Serum creatine kinase (CK) and creatinine (Crn) levels were measured, and the correlations were further analyzed.

Results

Significant differences in CK and Crn levels were found among different types before treatment. Baseline CK levels in children with SMA type 3 were higher than those with types 1 and 2 (P = 0.008 and 0.042, respectively), while baseline Crn levels were higher in type 3 than in type 2 (P < 0.001). During the follow-up, baseline Crn levels in types 2 and 3 patients with clinically meaningful improvements in HFMSE scores were higher than those without such improvements (P = 0.013). Additionally, a correlation was observed between HFMSE scores and CK and Crn levels in types 2 and 3 patients (CK: P < 0.001, ρ = 0.473; Crn: P < 0.001, ρ = 0.642). RULM scores were correlated with Crn levels (P < 0.001, ρ = 0.642).

Conclusions

Serum CK and Crn levels appear to correlate with clinical severity in later-onset SMA. Moreover, baseline serum Crn may serve as a potential biomarker for predicting the degree of motor function improvement under nusinersen treatment in children with later-onset SMA.

背景：在疾病改善治疗时代，寻找方便有效的生物标志物是脊髓性肌萎缩症（SMA）治疗的关键和迫切需求。方法：回顾性收集65例肌萎缩症患儿的资料，并对其进行18个月的随访。在基线、6、10、14和18个月时，使用费城儿童医院婴儿神经肌肉疾病测试（chop -意图）、Hammersmith功能运动量表扩展（HFMSE）和修订上肢模块（RULM）评估运动功能。测定血清肌酸激酶（CK）和肌酐（Crn）水平，并进一步分析相关性。结果：治疗前不同类型患者CK、Crn水平差异有统计学意义。3型SMA患儿的基线CK水平高于1型和2型（P分别为0.008和0.042），而3型SMA患儿的基线Crn水平高于2型(P结论：血清CK和Crn水平似乎与晚发型SMA的临床严重程度相关。此外，基线血清Crn可能作为预测迟发性SMA儿童在nusinsen治疗下运动功能改善程度的潜在生物标志物。

{"title":"Value of creatine kinase and creatinine as biomarkers in nusinersen-treated children with spinal muscular atrophy","authors":"Jielu Ren , Yicheng Yu , Xinli Zou , Yijie Feng, Danhui Zhu, Yue Yan, Liya Jiang, Jianing Jin, Siyi Huang, Feng Gao, Shanshan Mao","doi":"10.1016/j.ejpn.2025.10.001","DOIUrl":"10.1016/j.ejpn.2025.10.001","url":null,"abstract":"<div><h3>Background</h3><div>The search for convenient and effective biomarkers is a critical and pressing need for spinal muscular atrophy (SMA) in the era of disease-modifying treatment.</div></div><div><h3>Methods</h3><div>Data from 65 SMA children treated with nusinersen and followed up for 18 months were retrospectively collected. Motor function was assessed at baseline, 6, 10, 14 and 18 months using the Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP-INTEND), the Hammersmith Functional Motor Scale Expanded (HFMSE), and the Revised Upper Limb Module (RULM). Serum creatine kinase (CK) and creatinine (Crn) levels were measured, and the correlations were further analyzed.</div></div><div><h3>Results</h3><div>Significant differences in CK and Crn levels were found among different types before treatment. Baseline CK levels in children with SMA type 3 were higher than those with types 1 and 2 (<em>P</em> = 0.008 and 0.042, respectively), while baseline Crn levels were higher in type 3 than in type 2 (<em>P</em> < 0.001). During the follow-up, baseline Crn levels in types 2 and 3 patients with clinically meaningful improvements in HFMSE scores were higher than those without such improvements (<em>P</em> = 0.013). Additionally, a correlation was observed between HFMSE scores and CK and Crn levels in types 2 and 3 patients (CK: <em>P</em> < 0.001, ρ = 0.473; Crn: <em>P</em> < 0.001, ρ = 0.642). RULM scores were correlated with Crn levels (<em>P</em> < 0.001, ρ = 0.642).</div></div><div><h3>Conclusions</h3><div>Serum CK and Crn levels appear to correlate with clinical severity in later-onset SMA. Moreover, baseline serum Crn may serve as a potential biomarker for predicting the degree of motor function improvement under nusinersen treatment in children with later-onset SMA.</div></div>","PeriodicalId":50481,"journal":{"name":"European Journal of Paediatric Neurology","volume":"59 ","pages":"Pages 38-44"},"PeriodicalIF":2.3,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145253521","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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

Corrigendum to “Re-examining the characteristics of pediatric multiple sclerosis in the era of antibody-associated demyelinating syndromes” [Europ. J. Paediatr. Neurol. 41 (2022) 8–18 doi.org/10.1016/j.ejpn.2022.08.006] “在抗体相关脱髓鞘综合征时代重新检查小儿多发性硬化症的特征”的勘误表[欧洲]。j . Paediatr。神经学报。41 (2022)8-18 doi.org/10.1016/j.ejpn.2022.08.006]。

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY

European Journal of Paediatric Neurology

Pub Date : 2025-11-01 Epub Date: 2024-12-02 DOI: 10.1016/j.ejpn.2024.11.006

Ünsal Yılmaz , Kıvılcım Gücüyener , Merve Yavuz , ˙ Ibrahim Oncel , Mehmet Canpolat , Sema Saltık , Olcay Ünver , Ayşegül Neşe Çıtak Kurt , Ayşe Tosun , Sanem Yılmaz , Bilge Özgör , İlknur Erol , Ülkühan Öztoprak , Duygu Aykol Elitez , Meltem Çobanoğulları Direk , Muhittin Bodur , Serap Teber , Banu Anlar

引用次数: 0

From controlled trials to real-world evidence: Learning from the glycopyrronium treatment journey 从对照试验到真实世界的证据：从glycopyronium治疗历程中学习。

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY

European Journal of Paediatric Neurology

Pub Date : 2025-11-01 Epub Date: 2025-10-21 DOI: 10.1016/j.ejpn.2025.10.011

Stéphane Auvin

引用次数: 0

GLUT1DS: focus on motor profile GLUT1DS：专注于电机轮廓。

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY

European Journal of Paediatric Neurology

Pub Date : 2025-11-01 Epub Date: 2025-10-16 DOI: 10.1016/j.ejpn.2025.10.008

Costanza Varesio , Valeria Vacchini , Massimiliano Celario , Miriam Paola Pili , Ludovica Pasca , Carlo Alberto Quaranta , Francesca Ferraro , Martina Maria Mensi , Chiara Conti , Martina Paola Zanaboni , Valentina De Giorgis

Background

Glucose Transporter Type 1 Syndrome (GLUT1DS) is a rare neurometabolic disease caused by mutations in the SLC2A1 gene, that limits the transport of glucose across the blood-brain barrier. Epilepsy, intellectual disability, movement disorders and coordination disorder are common characteristics found in the syndrome.

Objectives

This study aims to describe the motor profile in a cohort of patients with GLUT1DS throughout the administration of Movement Assessment Battery for Children version 2 (MABC-2).

Methods

The MABC-2 test was assessed in 31 patients with GLUT1DS.

Results

Our sample performed in the clinical range across all the subscales and summary scores of the MABC-2 Test demonstrated an impaired motor performance.

Conclusions

Despite the use of use of MABC-2 scores in adults despite age-related norms, and the potential influence of cognitive impairments on task comprehension and performance, which may affect the interpretation of motor outcomes we observed that patients with more complex and severe clinical pictures are those with major motor impairment. The high percentage of impaired performances in motor functioning observed in our population may have significant implications in terms of their long-term health and well being. Early identification of patient with GLUT1DS at risk of motor impairment is crucial to activate interventions to support cognitive, social and emotional development of the patient.

背景：葡萄糖转运蛋白1型综合征（GLUT1DS）是一种罕见的神经代谢性疾病，由SLC2A1基因突变引起，该基因限制了葡萄糖通过血脑屏障的转运。癫痫、智力障碍、运动障碍和协调障碍是该综合征的共同特征。目的：本研究旨在描述一组GLUT1DS患者在使用儿童运动评估电池版本2 （MABC-2）期间的运动特征。方法：对31例GLUT1DS患者进行MABC-2检测。结果：我们的样本在临床范围内的所有亚量表和MABC-2测试的总结分数显示出运动表现受损。结论：尽管在成人中使用MABC-2评分，尽管存在与年龄相关的规范，以及认知障碍对任务理解和表现的潜在影响，这可能会影响对运动结果的解释，但我们观察到，具有更复杂和严重临床症状的患者是那些患有严重运动障碍的患者。在我们的人群中观察到的运动功能受损的高比例可能对他们的长期健康和福祉有重大影响。早期识别有运动障碍风险的GLUT1DS患者对于激活干预措施以支持患者的认知、社交和情感发展至关重要。

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引用次数: 0

Determinants of long-term health-related quality of life in paediatric traumatic brain injury 儿童外伤性脑损伤患者长期健康相关生活质量的决定因素

IF 2.3 3区医学 Q3 CLINICAL NEUROLOGY

European Journal of Paediatric Neurology

Pub Date : 2025-11-01 Epub Date: 2025-09-24 DOI: 10.1016/j.ejpn.2025.09.003

Sophie M. Coffeng , Harm J. van der Horn , Manon L. Out , Zwany Metting , Roos M.D. van der Jagt , Joukje van der Naalt

Introduction

Information on health-related quality of life (HRQoL) after traumatic brain injury (TBI) for paediatric patients is scarce. Therefore, the aim of this study was to determine HRQoL and its risk factors in children several years after TBI.

Methodology

Data were obtained from a prospectively follow-up cohort study of paediatric TBI patients (aged 0–18 years) admitted to the emergency department of the UMCG between 2008 and 2016. Long-term HRQoL was measured by the PedsQL 4.0 questionnaire. Patient and trauma characteristics were collected from digital patient files and posttraumatic complaints were evaluated by a health questionnaire.

Results

416 children completed the PedsQL and the health questionnaire (17 % minor TBI, 65 % mild TBI, 8 % moderate TBI, and 10 % severe TBI). 52 % Of the children experienced long-term concentration problems, 52 % headache problems and 39 % memory problems. Memory problems were more present in the moderate-severe TBI group (p < 0.01). The mean total PedsQL score for the total group of children was good: 84.8 ± 13.3 (SD) with a comparable score for parent-proxies (84.5 ± 14.0). Lower HRQoL was associated with lower GCS score at the ED (B 0.31 (95% CI 0.02 to 0.59)), posttraumatic memory problems (B −6.97 (95% CI -9.66 to −4.28)), concentration problems (B −6.76 (95% CI -9.36 to −4.15) and headache (B −4.06 (95% CI -6.33 to −1.78)).

Conclusions

Most paediatric TBI patients score their HRQoL as good several years after injury despite posttraumatic cognitive complaints and headache experienced by half of the patients. These complaints and lower GCS score have a negative influence on HRQoL.

关于儿童创伤性脑损伤（TBI）后健康相关生活质量（HRQoL）的信息很少。因此，本研究的目的是确定创伤后几年儿童的HRQoL及其危险因素。方法：数据来自一项前瞻性随访队列研究，研究对象是2008年至2016年间在UMCG急诊科住院的儿科TBI患者（0-18岁）。采用PedsQL 4.0问卷测量长期HRQoL。从数字患者档案中收集患者和创伤特征，并通过健康问卷评估创伤后投诉。结果：416名儿童完成了PedsQL和健康问卷（17%为轻度TBI， 65%为轻度TBI， 8%为中度TBI， 10%为重度TBI）。52%的儿童出现长期注意力问题，52%出现头痛问题，39%出现记忆力问题。结论：大多数儿童TBI患者在损伤后几年的HRQoL评分良好，尽管有一半的患者出现创伤后认知障碍和头痛。这些抱怨和较低的GCS评分对HRQoL有负面影响。

{"title":"Determinants of long-term health-related quality of life in paediatric traumatic brain injury","authors":"Sophie M. Coffeng , Harm J. van der Horn , Manon L. Out , Zwany Metting , Roos M.D. van der Jagt , Joukje van der Naalt","doi":"10.1016/j.ejpn.2025.09.003","DOIUrl":"10.1016/j.ejpn.2025.09.003","url":null,"abstract":"<div><h3>Introduction</h3><div>Information on health-related quality of life (HRQoL) after traumatic brain injury (TBI) for paediatric patients is scarce. Therefore, the aim of this study was to determine HRQoL and its risk factors in children several years after TBI.</div></div><div><h3>Methodology</h3><div>Data were obtained from a prospectively follow-up cohort study of paediatric TBI patients (aged 0–18 years) admitted to the emergency department of the UMCG between 2008 and 2016. Long-term HRQoL was measured by the PedsQL 4.0 questionnaire. Patient and trauma characteristics were collected from digital patient files and posttraumatic complaints were evaluated by a health questionnaire.</div></div><div><h3>Results</h3><div>416 children completed the PedsQL and the health questionnaire (17 % minor TBI, 65 % mild TBI, 8 % moderate TBI, and 10 % severe TBI). 52 % Of the children experienced long-term concentration problems, 52 % headache problems and 39 % memory problems. Memory problems were more present in the moderate-severe TBI group (p < 0.01). The mean total PedsQL score for the total group of children was good: 84.8 ± 13.3 (SD) with a comparable score for parent-proxies (84.5 ± 14.0). Lower HRQoL was associated with lower GCS score at the ED (B 0.31 (95% CI 0.02 to 0.59)), posttraumatic memory problems (B −6.97 (95% CI -9.66 to −4.28)), concentration problems (B −6.76 (95% CI -9.36 to −4.15) and headache (B −4.06 (95% CI -6.33 to −1.78)).</div></div><div><h3>Conclusions</h3><div>Most paediatric TBI patients score their HRQoL as good several years after injury despite posttraumatic cognitive complaints and headache experienced by half of the patients. These complaints and lower GCS score have a negative influence on HRQoL.</div></div>","PeriodicalId":50481,"journal":{"name":"European Journal of Paediatric Neurology","volume":"59 ","pages":"Pages 11-17"},"PeriodicalIF":2.3,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145187269","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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