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Motor skills and working memory capacity in preadolescents born very preterm 运动技能和工作记忆能力对早产儿的影响。
IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-11-12 DOI: 10.1111/dmcn.70089

Children who are born very early (before 32 weeks of pregnancy) often face challenges as they grow up. One area that can be affected is working memory. This is the ability to keep information in mind for a short time and use it — for example, remembering a teacher's instructions or where you placed your keys. Working memory is important for school and everyday life.

In our study, we compared 53 children born very preterm with 53 children born full-term, all between 9 and 13 years old. We measured their working memory using a computer task and recorded brain activity simultaneously. We further assessed their motor skills, such as balance and manual dexterity.

Our results indicated that children born very preterm had more difficulty storing and using visual information in working memory. Their brain activity patterns also suggested challenges when the task became more demanding. Importantly, we discovered that differences in motor skills explained much of the gap in working memory performance. Children born very preterm who had poorer balance and hand skills also showed the greatest difficulties with working memory.

出生很早(怀孕32周之前)的儿童在成长过程中经常面临挑战。其中一个可能受到影响的领域是工作记忆。这是一种短时间内记住信息并使用它的能力——例如,记住老师的指示或你把钥匙放在哪里。工作记忆对学习和日常生活都很重要。在我们的研究中,我们比较了53名早产儿童和53名足月儿童,他们的年龄都在9到13岁之间。我们通过电脑任务测量了他们的工作记忆,同时记录了他们的大脑活动。我们进一步评估了他们的运动技能,如平衡和手灵巧性。我们的研究结果表明,早产儿在工作记忆中存储和使用视觉信息的难度更大。当任务要求更高时,他们的大脑活动模式也表明了挑战。重要的是,我们发现运动技能的差异在很大程度上解释了工作记忆表现的差距。早产儿的平衡能力和手部技能较差,在工作记忆方面也表现出最大的困难。
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引用次数: 0
Early motor and cognitive development in typically developing children and those with or at high risk of cerebral palsy: A scoping review. 正常发育儿童和脑瘫高危儿童的早期运动和认知发展:范围综述
IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-11-11 DOI: 10.1111/dmcn.70041
Kanishka Baduni, Owais A Khan, Christopher M Modlesky, Nathalie L Maitre

Aim: To examine associations between motor skills and cognitive development from birth to 5 years in typically developing children and children diagnosed with or at high risk of cerebral palsy (CP).

Method: Following prospective registration, five databases (PubMed, Web of Science, Embase, PsycINFO, and Cochrane) were searched to identify studies reporting motor and cognitive outcomes in children aged from birth to 5 years. Findings were synthesized using Preferred Reporting Items for Systematic reviews and Meta-Analyses for Scoping Reviews (PRISMA-ScR) guidelines.

Results: Thirty-three studies met the inclusion criteria. In typically developing children, motor skills consistently showed positive associations with later cognitive abilities, with fine motor skills having particularly strong predictive value. Among children with or at high risk of CP, developmental trajectories were more variable, yet motor delays were frequently associated with poorer cognitive performance.

Interpretation: Early motor proficiency is consistently associated with cognitive outcomes during early childhood. Motor impairments among children with or at high risk for CP may constrain cognitive development. Future research should investigate underlying mechanisms and explore integrated interventions targeting motor and cognitive domains.

目的:研究正常发育儿童和诊断为脑瘫(CP)或高危儿童从出生到5岁的运动技能和认知发展之间的关系。方法:在前瞻性注册后,检索了五个数据库(PubMed, Web of Science, Embase, PsycINFO和Cochrane),以确定报告出生至5岁儿童运动和认知结果的研究。使用系统评价的首选报告项目和范围评价的荟萃分析(PRISMA-ScR)指南对研究结果进行综合。结果:33项研究符合纳入标准。在发育正常的儿童中,运动技能始终与后来的认知能力呈正相关,其中精细运动技能具有特别强的预测价值。在患有或有CP高风险的儿童中,发展轨迹变化更大,但运动迟缓通常与较差的认知表现有关。解释:早期运动能力始终与儿童早期的认知结果相关。患有或有CP高风险的儿童的运动障碍可能会限制认知发展。未来的研究应探讨潜在的机制,并探索针对运动和认知领域的综合干预措施。
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引用次数: 0
Microscopic and molecular aspects of skeletal muscle alterations in cerebral palsy. 脑瘫骨骼肌改变的微观和分子方面。
IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-11-09 DOI: 10.1111/dmcn.70044
Sebastian Edman, Oscar Horwath, Eva Pontén, Sudarshan Dayanidhi, Ferdinand von Walden

Cerebral palsy (CP), the most prevalent childhood-onset motor disability, frequently entails progressive musculoskeletal complications. This comprehensive review synthesizes existing knowledge of microscopic and molecular alterations in CP skeletal muscle. Considerable methodological variability, heterogeneous patient cohorts, and inconsistent control groups significantly complicate comparative interpretations across studies. Nonetheless, some structural abnormalities consistently emerge, including increased variability in muscle fibre size, altered fibre type distribution, long sarcomeres at standardized joint positions, increased collagen content, disrupted neuromuscular junction integrity, reduced capillary density, and mitochondrial and satellite cell impairments. Investigations of satellite cell function in vitro further underscore potential mechanistic alterations, although findings remain inconsistent. Remarkably, few studies have systematically explored the cellular and molecular consequences of standard clinical interventions, revealing a notable research gap. In conclusion, the overall literature reveals considerable divergence in reported outcomes, reflecting the profound complexity of CP muscle biology. We believe that resolving this complexity will require more coordinated and collaborative research approaches.

脑瘫(CP)是最常见的儿童期运动障碍,经常伴有进行性肌肉骨骼并发症。这篇综述综合了CP骨骼肌微观和分子改变的现有知识。相当大的方法可变性、异质患者队列和不一致的对照组显著地使研究间的比较解释复杂化。尽管如此,仍会出现一些结构异常,包括肌纤维大小变异性增加、纤维类型分布改变、标准化关节位置的长肌节、胶原含量增加、神经肌肉连接处完整性破坏、毛细血管密度降低以及线粒体和卫星细胞损伤。体外卫星细胞功能的研究进一步强调了潜在的机制改变,尽管研究结果仍然不一致。值得注意的是,很少有研究系统地探讨了标准临床干预的细胞和分子后果,揭示了一个显著的研究差距。总之,整体文献揭示了报道结果的相当大的差异,反映了CP肌肉生物学的深刻复杂性。我们认为,解决这一复杂性将需要更多协调和合作的研究方法。
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引用次数: 0
Common data elements of cerebral palsy registries in Arabic-speaking countries: A scoping review. 阿拉伯语国家脑瘫登记的共同数据要素:范围审查。
IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-11-07 DOI: 10.1111/dmcn.70059
Nihad Ali Almasri, Carl J Dunst

Aim: To (1) identify and extract common data elements (CDEs) reported in registry- and population-based cerebral palsy (CP) studies in Arabic-speaking countries (ASCs), (2) compare reporting across study designs to ensure consistency of extraction and comparability of CDEs, (3) classify reporting consistency of the CDEs across six categories of frequency of reporting, and (4) assess the alignment of CDEs with data elements from international registry networks.

Method: The review was conducted using the JBI methodology for scoping reviews and reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) guidelines. The Rayyan web application was used as a screening tool. Thirty-eight studies from 11 ASCs were analyzed. CDEs were extracted and grouped by frequency and thematic domains. Fisher's exact test and Cohen's kappa (κ) measured agreement across study types and with three international CP registry networks.

Results: Across 38 studies, core demographic and clinical CP classification data (age, sex, motor type, and topographical distribution) and birth-related characteristics (gestational age, birthweight, and mode of delivery) were consistently reported. Functional classifications, parental demographics, socioeconomic status, and rehabilitation services were less frequently included, particularly in population-based studies. Agreement with international registries was fair with the Australian Cerebral Palsy Register (κ = 0.26) and Global Low and Middle Income Cerebral Palsy Registers (κ = 0.24), but only slight with the Surveillance of Cerebral Palsy in Europe (κ = 0.17). Twelve elements were consistently reported across ASC studies and all three registry networks, covering demographic, perinatal, and core functional classifications.

Interpretation: ASC studies capture core CP data but remain inconsistent in reporting functional classifications, family context, and rehabilitation services. Establishing a harmonized minimum data set and registry network for ASCs would strengthen data quality, guide evidence-informed policy, and enhance both regional and global research impact.

目的:(1)识别和提取阿拉伯语国家(ASCs)基于注册表和人群的脑瘫(CP)研究中报告的共同数据元素(CDEs),(2)比较不同研究设计的报告,以确保CDEs提取的一致性和可比性,(3)根据报告频率对CDEs的报告一致性进行分类,(4)评估CDEs与国际注册网络数据元素的一致性。方法:采用JBI方法进行范围评价,并按照系统评价和荟萃分析扩展范围评价的首选报告项目(PRISMA-ScR)指南进行报告。Rayyan web应用程序被用作筛选工具。分析了来自11个ASCs的38项研究。根据频率和主题域对cde进行提取和分组。Fisher的精确检验和Cohen的kappa (κ)测量了不同研究类型和三个国际CP注册网络的一致性。结果:在38项研究中,核心人口统计学和临床CP分类数据(年龄、性别、运动类型和地形分布)和出生相关特征(胎龄、出生体重和分娩方式)得到了一致的报告。功能分类、父母人口统计、社会经济地位和康复服务较少被纳入,特别是在基于人群的研究中。澳大利亚脑瘫注册表(κ = 0.26)和全球中低收入脑瘫注册表(κ = 0.24)与国际注册表的一致性较好,但与欧洲脑瘫监测表的一致性较差(κ = 0.17)。在ASC研究和所有三个登记网络中一致报告了12个要素,涵盖人口统计学,围产期和核心功能分类。解释:ASC研究捕获了核心CP数据,但在报告功能分类、家庭背景和康复服务方面仍不一致。为ASCs建立统一的最低数据集和注册网络将加强数据质量,指导循证政策,并增强区域和全球研究影响。
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引用次数: 0
Biostatistics of generalized estimating equations in developmental medicine and child neurology. 发育医学和儿童神经病学中广义估计方程的生物统计学。
IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-11-07 DOI: 10.1111/dmcn.70060
Camille Eugénie Dieu, Giovanni Briganti

This review provides clinicians and researchers in developmental medicine and paediatric neurology with a guide to using generalized estimating equations (GEEs) for longitudinal paediatric data. We present a concise primer on core GEE concepts for non-statistical audiences, emphasizing paediatric applications. Using a randomized trial of oestrogen versus placebo for postnatal depression, we provide a reproducible workflow (in R code) for continuous and binary outcomes. We compare exchangeable and autoregressive (first-order autoregressive model) working correlations and discuss implications for efficiency and interpretation. Because the data set is maternal and contains no child outcomes, we treat it as a perinatal case study relevant to child development and use it to illustrate marginal (population-averaged) inference in longitudinal clinical data. GEEs yielded stable marginal estimates across correlation structures when the mean model was correctly specified. Oestrogen was associated with significantly lower odds of postnatal depression than placebo, with negligible differences in model fit (correlation information criterion). Statistical choices mainly affected efficiency and standard errors rather than effect sizes. GEEs provide a robust, interpretable framework for analysing correlated outcomes in paediatric research. Paired with a reproducible example, this helps clinicians and researchers select appropriate models, report working correlations transparently, and interpret marginal effects in practice.

本综述为发育医学和儿科神经病学的临床医生和研究人员提供了使用广义估计方程(GEEs)纵向儿科数据的指南。我们提出了一个简明的入门核心概念的非统计观众,强调儿科应用。使用雌激素与安慰剂对产后抑郁症的随机试验,我们为连续和二元结果提供了一个可重复的工作流程(用R代码)。我们比较了可交换和自回归(一阶自回归模型)工作相关性,并讨论了效率和解释的含义。由于数据集是母亲的,不包含儿童结局,我们将其视为与儿童发展相关的围产期案例研究,并使用它来说明纵向临床数据中的边缘(人口平均)推断。当正确指定平均模型时,GEEs在相关结构上产生稳定的边际估计。雌激素与产后抑郁的发生率显著低于安慰剂,模型拟合差异可忽略不计(相关信息标准)。统计选择主要影响效率和标准误差,而不是效应大小。GEEs为分析儿科研究的相关结果提供了一个强大的、可解释的框架。结合可重复的例子,这有助于临床医生和研究人员选择合适的模型,透明地报告工作相关性,并解释实践中的边际效应。
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引用次数: 0
Cerebrovascular imaging and neurocognitive outcomes in children with moyamoya. 烟雾症患儿的脑血管影像学和神经认知预后。
IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-11-05 DOI: 10.1111/dmcn.70065
Lauren Harris, Charlotte P Malcolm, Annabella Taylor, Annisha Attanayake, Rebecca Limb, Claire Toolis, Adikarige Haritha Dulanka Silva, Vijeya Ganesan, Tara Murphy, Greg James

Aim: To study the relationship between brain and cerebrovascular imaging and neurocognitive metrics in children with moyamoya.

Method: This was a retrospective observational study of 34 children with moyamoya. Intellectual function was assessed using the Wechsler scales. Neuroimaging variables included the Suzuki stage, ivy sign score, paediatric moyamoya MRI score (PMMS), and a novel angiogram score.

Results: Intellectual function was significantly below average (mean IQ = 86.6). Ivy sign and PMMS were negatively associated with all indices of intellectual function (r = -0.32 to 0.5, p < 0.05). The angiogram score was negatively correlated with non-verbal reasoning, full-scale IQ (FSIQ), and working memory (r = -0.32 to -0.4, p < 0.05). Children with posterior circulation involvement had significantly lower mean IQ scores in the mild-moderate impairment range compared to the average range for children without. The posterior cerebral artery (PCA) ivy sign score and PMMS together significantly explain 35% of the variance in FSIQ (p < 0.001), and accurately classified children with moyamoya who had weak cognitive ability (FSIQ <85), with area under the curve of 0.76 (p = 0.01) and 0.735 (p = 0.02) respectively.

Interpretation: This study reliably identified a relationship between simple, routine neuroradiology sequences and neuropsychological outcomes in paediatric moyamoya. PMMS and/or PCA ivy sign score can be used to identify those children most at risk of cognitive impairment.

目的:探讨烟雾症患儿脑脑血管影像学与神经认知指标的关系。方法:对34例烟雾症患儿进行回顾性观察研究。使用韦氏量表评估智力功能。神经影像学变量包括铃木分期、常青藤征评分、儿科烟雾MRI评分(PMMS)和一种新型血管造影评分。结果:智力功能明显低于平均水平(平均IQ = 86.6)。常青藤征和PMMS与智力功能的所有指标呈负相关(r = -0.32 ~ 0.5, p)。解释:本研究可靠地确定了简单、常规的神经放射学序列与儿童烟雾症的神经心理预后之间的关系。经前综合症和/或PCA常青藤症状评分可用于识别那些最有认知障碍风险的儿童。
{"title":"Cerebrovascular imaging and neurocognitive outcomes in children with moyamoya.","authors":"Lauren Harris, Charlotte P Malcolm, Annabella Taylor, Annisha Attanayake, Rebecca Limb, Claire Toolis, Adikarige Haritha Dulanka Silva, Vijeya Ganesan, Tara Murphy, Greg James","doi":"10.1111/dmcn.70065","DOIUrl":"https://doi.org/10.1111/dmcn.70065","url":null,"abstract":"<p><strong>Aim: </strong>To study the relationship between brain and cerebrovascular imaging and neurocognitive metrics in children with moyamoya.</p><p><strong>Method: </strong>This was a retrospective observational study of 34 children with moyamoya. Intellectual function was assessed using the Wechsler scales. Neuroimaging variables included the Suzuki stage, ivy sign score, paediatric moyamoya MRI score (PMMS), and a novel angiogram score.</p><p><strong>Results: </strong>Intellectual function was significantly below average (mean IQ = 86.6). Ivy sign and PMMS were negatively associated with all indices of intellectual function (r = -0.32 to 0.5, p < 0.05). The angiogram score was negatively correlated with non-verbal reasoning, full-scale IQ (FSIQ), and working memory (r = -0.32 to -0.4, p < 0.05). Children with posterior circulation involvement had significantly lower mean IQ scores in the mild-moderate impairment range compared to the average range for children without. The posterior cerebral artery (PCA) ivy sign score and PMMS together significantly explain 35% of the variance in FSIQ (p < 0.001), and accurately classified children with moyamoya who had weak cognitive ability (FSIQ <85), with area under the curve of 0.76 (p = 0.01) and 0.735 (p = 0.02) respectively.</p><p><strong>Interpretation: </strong>This study reliably identified a relationship between simple, routine neuroradiology sequences and neuropsychological outcomes in paediatric moyamoya. PMMS and/or PCA ivy sign score can be used to identify those children most at risk of cognitive impairment.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145453895","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
Academic boycott: The possibility of a more ethical, constructive response 学术抵制:一种更合乎道德、更具建设性的回应的可能性。
IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-11-05 DOI: 10.1111/dmcn.70061
Bernard Dan
<p>The question of academic boycotts arises whenever geopolitical crises, human rights abuses, or international conflicts challenge the global scholarly community. Academic boycotts may involve refusing collaboration, funding, or publication with universities in a country viewed as complicit in injustice, or excluding their representatives from conferences and scholarly associations. These calls typically arise from moral urgency: when governments or institutions are seen as enabling oppression, scholars seek to leverage intellectual and symbolic capital to express solidarity and exert pressure for change. Proponents of boycotts argue that academia cannot remain neutral in the face of systemic violence or repression.</p><p>The anti-apartheid boycott of South African universities is often cited as a precedent, offering historical background to current debates over situations like those in Russia and Israel. But as with so many complex situations, assessing one element's impact in isolation is almost impossible.<span><sup>1</sup></span> The end of apartheid resulted from intertwined economic, political, and social pressures; academic isolation played a symbolic rather than decisive role. It also had unintended consequences, harming scholars and students who were critical of the regime, and weakening research infrastructure and scientific communities, including those the boycott sought to empower.<span><sup>2</sup></span></p><p>This ambivalence should caution against contemporary calls for blanket exclusions. Evidence that academic boycotts achieve concrete political outcomes remains weak. In the context of Russia's war against Ukraine, for instance, calls to exclude Russian scholars from collaborations and conferences have sparked intense debate,<span><sup>3</sup></span> which revived Hannah Arendt's ethical question of collective responsibility. While such measures might delegitimize complicit institutions, they can also reinforce authoritarian narratives of foreign hostility and further isolate dissenting academics. Boycotts risk collapsing distinctions between governments and individuals, punishing those who may be actively resisting oppression, and might serve as partners in fostering openness and reform.</p><p>Despite their hoped-for moral force, academic boycotts present ethical, practical, and sometimes paradoxical concerns.<span><sup>4</sup></span> Science and scholarship depend on openness, dialogue, and international collaboration. When these principles are compromised, exclusion can be weaponized by governments as propaganda, and independent voices lose the protective visibility that global engagement provides. Procedural fairness is another problem: boycotts rarely specify how complicity is defined or assessed, leaving individuals and institutions vulnerable to inconsistent or politically motivated judgements.</p><p>More constructive, ethical responses are possible – approaches that uphold academic freedom while addressing injustice thr
每当地缘政治危机、人权侵犯或国际冲突挑战全球学术界时,学术抵制问题就会出现。学术抵制可能包括拒绝与被视为不公正同谋的国家的大学合作、资助或发表论文,或将其代表排除在会议和学术协会之外。这些呼吁通常来自道德上的紧迫性:当政府或机构被视为压迫的工具时,学者们寻求利用智力和象征资本来表达团结,并施加压力,要求变革。抵制活动的支持者认为,学术界无法在系统性暴力或镇压面前保持中立。反对种族隔离的南非大学抵制运动经常被引用为一个先例,为当前关于俄罗斯和以色列等情况的辩论提供了历史背景。但是,在许多复杂的情况下,单独评估一个因素的影响几乎是不可能的种族隔离制度的终结是经济、政治和社会压力交织在一起的结果;学术孤立的作用是象征性的,而不是决定性的。它还产生了意想不到的后果,伤害了批评该政权的学者和学生,削弱了研究基础设施和科学界,包括那些抵制活动试图赋予权力的人。这种矛盾的心理应该提醒我们警惕当前对全面排除的呼吁。学术抵制取得具体政治成果的证据仍然薄弱。例如,在俄罗斯对乌克兰发动战争的背景下,将俄罗斯学者排除在合作和会议之外的呼吁引发了激烈的辩论,这再次引发了汉娜·阿伦特(Hannah Arendt)关于集体责任的伦理问题。虽然这些措施可能会使串通一气的机构失去合法性,但它们也会强化有关外国敌意的威权叙事,并进一步孤立持不同意见的学者。抵制可能会破坏政府和个人之间的区别,惩罚那些可能积极抵制压迫的人,并可能成为促进开放和改革的合作伙伴。尽管学术抵制所希望的是道德力量,但它带来了伦理的、实际的、有时是矛盾的关注科学和学术依赖于开放、对话和国际合作。当这些原则受到损害时,政府就可以将排斥作为宣传的武器,独立的声音就会失去全球参与所提供的保护性能见度。程序公平是另一个问题:抵制很少具体说明如何定义或评估共谋,使个人和机构容易受到不一致或出于政治动机的判断的影响。更有建设性、更合乎道德的回应是可能的——维护学术自由,同时通过参与而不是孤立来解决不公正问题。在学术课程和期刊中应强调社会正义、公平和包容的主题。学术机构、协会和期刊可以采用透明的指导方针,建立负责任的伙伴关系,强调人权、独立和正义。只有当机构直接(并可核实地)参与侵犯人权行为,并定期审查以确保问责制和相称性时,合作才能暂停。同样重要的是加强资源不足的机构和支持处于不稳定条件下的个别学者稳定背景下的大学可以通过联合研究、指导以及在线访问培训或基础设施来扩大合作,而不是切断联系这些举措使知识分子社区在压力下得以维持,并肯定了学术界的全球团结。研究金方案、紧急补助金和访问预约可以保护面临风险的学者,使他们能够安全地继续工作,从而有助于长期变革。学术外交也为倡导提供了非惩罚性的途径。期刊和学术协会可以利用其平台来关注侵犯人权行为,发表边缘化研究人员的研究成果,并在冲突分歧之间维持对话。这些行动保留了激励抵制的道德承诺,同时避免了其排他性成本。最终,学术道德要求抵制简单的参与与共谋的二元对立。这不是在道德沉默和断绝一切联系之间的选择。周到的替代方案,如保护弱势学者、能力建设和有条件的合作,肯定了学术界作为批判性探究和道德洞察力空间的作用。知识应该成为自由的灯塔,而不是成为政治冲突的牺牲品。
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引用次数: 0
Causal diagrams for research about childhood-onset disabilities. 儿童期残疾研究的因果图。
IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-11-05 DOI: 10.1111/dmcn.70064
Robert J Reynolds, Shona Goldsmith, Sarah Mcintyre, Steven M Day

Directed acyclic graphs (DAGs) are increasingly used to clarify assumptions, identify sources of bias, and structure reasoning about causal pathways across the health sciences. In developmental medicine, where causes often span the preconception to postnatal periods, DAGs offer a systematic way to navigate complexity. This review introduces foundational DAG concepts for clinicians and researchers in childhood-onset disability, with an emphasis on accessibility and applied relevance. We review examples involving cerebral palsy, autism, and attention-deficit/hyperactivity disorder, showing how DAGs support confounder control, effect estimation, and study design. The figures throughout the review use a consistent, clinically grounded example to walk readers through concepts like mediation, backdoor paths, and collider bias. Beyond modeling rigor, DAGs help foster collaboration across disciplines and communicate causal structure to families and individuals with lived experience. We also show how DAGs can support intervention prioritization by identifying strategic leverage points using network measures such as node centrality and graph characteristics. Finally, we emphasize the importance of drawing DAGs before data collection, when their guidance is most actionable.

有向无环图(dag)越来越多地用于澄清假设,确定偏差来源,并在整个健康科学的因果路径结构推理。在发育医学中,原因通常跨越孕前到产后,dag提供了一种系统的方法来驾驭复杂性。这篇综述为临床医生和研究人员介绍了儿童发病残疾的基本DAG概念,重点是可及性和应用相关性。我们回顾了涉及脑瘫、自闭症和注意缺陷/多动障碍的例子,展示了dag如何支持混杂因素控制、效果估计和研究设计。整个综述中的数据使用了一个一致的、临床基础的例子,向读者介绍了调解、后门路径和碰撞器偏差等概念。除了建模的严密性之外,dag还有助于促进跨学科的协作,并将因果结构传达给具有生活经验的家庭和个人。我们还展示了dag如何通过使用节点中心性和图特征等网络度量来确定战略杠杆点,从而支持干预优先级。最后,我们强调在数据收集之前绘制dag的重要性,此时它们的指导是最可操作的。
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引用次数: 0
Mainstream or special secondary school for the health, education, and well-being of adolescents with Down syndrome: A systematic review. 唐氏综合症青少年健康、教育和福祉的主流或特殊中学:系统回顾。
IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-11-04 DOI: 10.1111/dmcn.70066
Julia Shumway, Jill Ellis, Bianca Lucia De Stavola, Ruth Gilbert, Ania Zylbersztejn

Aim: To systematically examine evidence on the impact of attending mainstream compared with special secondary school for adolescents with Down syndrome, in terms of health, education, and well-being outcomes.

Method: We searched four bibliographic databases for studies comparing education and health (including social and self-care) outcomes in adolescents with Down syndrome who attended mainstream secondary school to those attending special secondary school.

Results: Of 4458 publications, we identified three studies from the UK and the Netherlands, which involved 246 adolescents with Down syndrome: 49 attended mainstream and 197 attended special secondary school. Of three studies examining education outcomes, two reported improved attainment among adolescents attending mainstream school, but both were at risk of bias from participant selection, missing data, and deviations to the intended intervention. One study reported social and self-care outcomes, with no significant differences. No studies reported health outcomes. Studies provided only cursory information about teaching support.

Interpretation: Parents, policy-makers, and others who make choices about education for adolescents with Down syndrome lack evidence on whether outcomes differ, on average, between mainstream and special secondary schools. Well-designed studies are needed to quantify the impact of secondary school type on outcomes among adolescents with Down syndrome.

目的:系统地研究唐氏综合症青少年在健康、教育和福祉结果方面就读主流中学与特殊中学的影响。方法:我们检索了四个文献数据库,以比较就读于主流中学和就读于特殊中学的唐氏综合症青少年的教育和健康(包括社会和自我保健)结果。结果:在4458份出版物中,我们确定了来自英国和荷兰的三项研究,涉及246名患有唐氏综合症的青少年:49名就读于主流学校,197名就读于特殊中学。在三项考察教育成果的研究中,有两项报告了主流学校的青少年学习成绩有所提高,但这两项研究都存在参与者选择偏倚、数据缺失和预期干预偏离的风险。一项研究报告了社交和自我保健结果,没有显著差异。没有研究报告健康结果。研究只提供了关于教学支持的粗略信息。解释:家长、政策制定者和其他对唐氏综合症青少年的教育做出选择的人缺乏证据表明,在主流中学和特殊中学之间,结果是否存在平均差异。需要精心设计的研究来量化中学类型对唐氏综合症青少年预后的影响。
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引用次数: 0
Can we have better equity and access across health systems for children with disabilities? 我们能否在整个卫生系统中为残疾儿童提供更好的公平和可及性?
IF 4.3 2区 医学 Q1 CLINICAL NEUROLOGY Pub Date : 2025-11-02 DOI: 10.1111/dmcn.70062
Arnab Seal
<p>Managing chronic childhood neurodevelopmental conditions in the 21st century has had a welcome shift in focus from cure and fixing approaches to biopsychosocial models. These models recognize the role of the family, environment, functioning, and participation in meaningful living for children with disabilities (https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health). Additionally, the advent of gene therapy and artificial intelligence-assisted drug development, amongst others, opens up exciting possibilities of treatment leading to better quality of life and longevity. To achieve the full potential of these ideas we need national healthcare systems that provide equity of care and access, so that no child is left behind. This requires access to resources like trained personnel, money (to pay appropriate wages, cover costs for treatments, fund provider systems, and establish inclusive and accessible environments), and the political willpower to make it all happen.</p><p>Globally there are many different healthcare systems (https://www.commonwealthfund.org/international-health-policy-center/system-features), including single-payer systems where all care is funded by the government from the national budget; private healthcare systems where the patient pays their way; insurance-based systems (private or social) where the care is proportionate to the insurance; or a mixed hybrid model (https://assets.kingsfund.org.uk/f/256914/x/92e25176a8/new_settlement_health_social_care_background_paper_social_care_2014.pdf). In many countries the healthcare costs of vulnerable children are partly subsidized. In some other nations the voluntary sector takes on a large role to bridge the gap. In reality, care of acute conditions often gets the lion's share of the funding, with chronic childhood neurodevelopmental conditions receiving far less. Who can argue against the higher need for better emergency services versus supporting care for chronic conditions when doling out from a limited pot of funds? Thus, we are left with huge variations in equity and access between and within nations.<span><sup>1</sup></span> In low-resource settings the state-funded systems are often inadequate, and whilst specialist neurodevelopmental care may be easily accessed privately at a significant cost, in reality it is inaccessible for most.</p><p>Another requirement for developing robust national healthcare systems is the need for reliable national data management systems.<span><sup>2</sup></span> Accurate collection, extraction, and analysis of data help identify local need and evaluate effectiveness of interventions. Multiple disparate data systems across fragmented providers are less useful, as data synthesis and analysis become impossible. Thus, any planned healthcare system requires an integrated, secure data system to support it.</p><p>Conference sessions in child neurology and neurodisability usually have very little discu
在21世纪,治疗儿童慢性神经发育疾病的重点已经从治疗和修复方法转向了生物心理社会模型,这是一个可喜的转变。这些模式承认家庭、环境、功能和参与对残疾儿童有意义的生活的作用(https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health)。此外,基因治疗和人工智能辅助药物开发的出现,在其他方面,开辟了令人兴奋的治疗可能性,从而提高生活质量和寿命。为了充分发挥这些想法的潜力,我们需要国家卫生保健系统提供公平的护理和获取机会,以便不让任何儿童掉队。这需要获得资源,如训练有素的人员、资金(支付适当的工资、支付治疗费用、资助提供者制度和建立包容和无障碍的环境),以及实现这一切的政治意志。全球有许多不同的卫生保健系统(https://www.commonwealthfund.org/international-health-policy-center/system-features),包括单一付款人系统,其中所有医疗服务由政府从国家预算中提供资金;病人自付医疗费的私人医疗系统;以保险为基础的系统(私人或社会),其中护理与保险成比例;或混合混合模型(https://assets.kingsfund.org.uk/f/256914/x/92e25176a8/new_settlement_health_social_care_background_paper_social_care_2014.pdf)。在许多国家,弱势儿童的医疗保健费用得到部分补贴。在其他一些国家,志愿部门在弥合差距方面发挥了重要作用。在现实中,急性病的治疗往往得到最大份额的资金,而儿童慢性神经发育疾病得到的资金要少得多。当从有限的资金中发放资金时,谁能反对对更好的紧急服务的更高需求,而不是对慢性病的支持护理?因此,我们在国家之间和国家内部的公平和机会方面存在巨大差异在资源匮乏的环境中,国家资助的系统往往是不够的,虽然专科神经发育护理可以很容易地以高昂的费用私下获得,但实际上大多数人都无法获得。发展健全的国家卫生保健系统的另一项要求是需要可靠的国家数据管理系统准确收集、提取和分析数据有助于确定当地需求并评估干预措施的有效性。由于数据合成和分析变得不可能,跨分散提供商的多个不同的数据系统变得不那么有用。因此,任何计划的医疗保健系统都需要一个集成的、安全的数据系统来支持它。儿童神经病学和神经残疾的会议通常很少讨论医疗保健系统或公平和获得护理的机会,尽管这个问题非常重要,我们有责任参与其中。临床网络和儿童残疾学院需要为这些对话提供机会。临床医生和有实际经验的人需要在国家和国际层面共同努力,游说政府和决策者优先考虑能够使残疾儿童不受歧视地获得正确护理的制度(https://www.kingsfund.org.uk/insight-and-analysis/long-reads/new-partnership-disabled-people-health-care)。虽然高收入国家可能有这种机会,但在资源匮乏的国家,挑战是巨大的,因为即使有最好的意图,这种公平也可能是不可能的。那么,我们从哪里开始呢?开始这样的对话的一个好地方是通过国家和国际网络和儿童发病神经和神经发育状况的学院让有实际经验的人参与这些对话和倡议,无论是通过政府、政策制定者,还是通过各种媒体吸引公众,都将扩大我们所能产生的影响。在我们的会议上举行专门讨论医疗保健政策和共同倡导的会议,可以发展强有力的伙伴关系,并制定宣传声明,为政府政策提供信息在这种国家和国际网络内的讨论中,以及在我们的儿童期发病残疾会议上,我们需要邀请政策制定者并让他们参与这种对话。这将促进思想的协同、适当的政策制定和更公平的资源分配。朝这个方向迈出的一步可能会给许多人带来巨大的好处。
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Developmental Medicine and Child Neurology
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