2021年Developmental Medicine & Child Neurology《改善脑性瘫痪儿童和青少年身体功能的干预措施：国际临床实践指南》中国专家解读

脑性瘫痪(脑瘫)是儿童最常见的肢体残疾。近年来,脑瘫康复理念不断更新,干预措施日益增多。2021年8月Developmental Medicine&Child Neurology发表了一篇针对改善脑瘫儿童和青少年身体功能的干预措施的国际临床实践指南。该指南在《国际功能、残疾和健康分类》(ICF)框架下,针对脑瘫儿童和青少年身体功能的干预措施提出了4项循证分级推荐和9项未分级的临床实践推荐,旨在改善脑瘫患儿的身体功能,提高活动及参与能力。该文将结合国内脑瘫康复现状对该指南进行解读,以期更新康复理念,提高干预效果,为家庭提供帮助和指导。     

《改善脑性瘫痪儿童和青少年身体功能的干预措施国际临床实践指南》中国专家解读

通过解读《改善脑性瘫痪儿童和青少年身体功能的干预措施国际临床实践指南》(简称指南),为改善儿童和青少年脑性瘫痪(脑瘫)患者身体功能的干预措施提供基于循证医学依据的建议。该指南通过系统搜索截至2018年11月Cochrane图书馆、CINAHL、Embase MEDLINE相关文献,使用推荐等级评估,发育和评估分级方法,...     

基于共识选择健康测量工具对粗大运动功能评估88项和66项测量学属性的系统评价

背景：在儿童和青少年脑性瘫痪临床实践指南（CANDLE）中对不同维度选题提出的评估工具尝试基于共识选择健康测量工具（COSMIN）进行心理测量学特性评价,以此在CANDLE中建立评估工具的纳入和排除标准。 目的：使用COSMIN对粗大运动功能评估88项和66项（GMFM 88和GMFM 66）的测量学属性进行系统评价,明确其各测量特性的证据等级,并为其临床应用提供证据,探索使用COSMIN方法对现场评估类量表进行评价的价值。 设计：系统评价。 方法：检索 MEDLINE、Embase和SinoMed数据库,纳入有关GMFM 88和GMFM 66测量学属性研究文献,使用更新的COSMIN偏倚风险检查表对所有测量学属性的方法学质量研究进行评估,使用更新的良好测量学属性标准对每项测量学属性研究进行评分。证据质量等级采用COSMIN修订版的GRADE 方法。 主要结局指标:GMFM 88和GMFM 66的内容效度。 结果：GMFM 88比GMFM 66内容效度证据等级高,二者均有较高质量的信度研究。GMFM 88在内部一致性、测量误差方面较GMFM 66有更多证据支持,GMFM 88缺乏结构效度研究。GMFM 88和GMFM 66均有高级别证据的平行效度和平行反应度,低证据级别或极低证据级别的区分效度和区分反应度,GMFM 66比GMFM 88有更高的效标反应度。 结论：使用COSMIN方法评价GMFM 88和GMFM 66的测量信度、内部一致性、假设检验效度为高级别证据。COSMIN方法可作为现场评估类量表测量学属性评估方法。     

中国脑性瘫痪康复指南(2022)第三章：ICF-CY框架下的儿童脑瘫评定

本章分别在中国知网、万方数据库、维普数据库、PubMed、Embase等数据库检索国际功能、残疾和健康分类(儿童和青少年版)(ICF-CY)框架下的脑性瘫痪(脑瘫)身体功能和结构评定、活动与参与评定及环境评定相关文献, 系统评价制订与更新参考Cochrane协作网方法, 证据水平与推荐强度采用本指南制定的方法, 并遵循RIGHT条目进行报告。本章引用了相关评定工具的最新研究进展, 可在脑瘫临床康复、科研及教学活动中应用。     

粗大运动功能测试量表在脑性瘫痪中的应用研究进展

粗大运动功能测试量表（gross motor function measure GMFM）是由Russell等人编制出版,主要用于测量脑瘫患儿的粗大功能运动状况随时间或由于干预而出现的运动功能改变,是目前脑瘫患儿粗大运动评估中使用最广泛的量表,Russell等曾综述了2001年以前GMFM量表的相关文献．本文以此后的文献为主综述关于GMFM量表的研究与应用新进展。     

青少年24小时活动与心理健康研究的范围综述

背景：由于睡眠、久坐行为和身体活动所构成的24 h活动与青少年心理健康关系的研究异质性极大等局限，难以得出足以指导临床实践的高质量证据集合。 目的：总结儿童青少年24 h活动（睡眠、久坐行为和身体活动）与心理健康关系的研究现状及其研究设计存在的问题并进行评价，为后续研究提供参考。 设计：范围综述。 方法：检索PubMed、Embase、Web of Science和中国知网数据库，检索时间为建库至2022年9月28日，以睡眠、久坐行为、身体活动、24 h活动、心理健康、青少年为检索词构建中英文检索式，纳入健康儿童青少年人群的24 h活动类型与心理健康之间的相关性或因果推断的研究。通过阅读文题、摘要和全文进行筛选，在数据提取和数据整合中，逐渐完善活动类型、测量方式、测量项目分类、测量具体项目的数据提取表格。 主要结局指标：青少年24 h活动和心理健康关系的研究类型及其测量工具。 结果：中英文数据库共检索到927篇文献，经去重、初筛和全文筛选后，最终纳入55篇文献，其中横断面研究45篇（82%），前瞻性队列研究10篇。睡眠：54篇描述了睡眠时长，4篇评估了睡眠质量、睡眠潜伏期、日间嗜睡情况和睡眠中断情况。久坐行为：50篇为主观报告，5篇为客观报告，46篇涉及屏幕暴露。身体活动：主观报告和客观评估中高强度身体活动时间分别为47篇和8篇。32篇文献关注了抑郁，9篇关注了焦虑，5篇关注了压力，35篇关注了其他心理健康结局（正性情绪、行为问题、生活满意度或健康相关生命质量、心理疾病及症状、情绪调节能力和手机成瘾）。44篇文献探索24 h活动与心理健康的相关性，8篇文献使用等时替代模型探索24 h活动结构的改变，3篇探索24 h活动影响心理健康的中介因素。 结论：青少年24 h活动与心理健康的关联研究尚少，所使用的测量工具有待规范统一，未来需针对现行24 h活动推荐时间建立等时替代模型或在真实世界进行干预研究，寻找既能够最大发挥24 h活动的健康效应，又能够让青少年人容易达到的24 h活动时间的推荐组合。     

2022年德国儿童和青少年医学会《儿童和青少年腰背痛病因、危险因素和诊断以及非特异性腰背痛治疗和预防的循证指南》解读

德国儿童和青少年医学会于2022年2月发布了儿童和青少年腰背痛的第一部循证指南, 主要对儿童和青少年腰背痛的病因、危险因素和诊断以及非特异性腰背痛的治疗和预防等方面作出基于循证证据和专家共识的推荐意见。虽然我国已发布非特异性腰背痛的诊疗指南, 但其中没有对儿童和青少年腰背痛的专门介绍, 考虑到腰背痛发病率日益年轻化以及儿童和青少年腰背痛与成人腰背痛在病因、危险因素和诊疗上的差异, 现对该指南进行解读, 以期为儿童和青少年腰背痛的临床诊疗提供参考和指导。     

北京地区儿童及青少年血压分布特征

目的了解北京地区儿童青少年血压的现况。方法按分层整群随机抽样法在北京市4个城区和3个郊区县的3—18岁儿童和青少年中,用“美国高血压教育项目工作组”和“中国高血压防治指南”推荐的测量方法进行收缩压（SBP）和舒张压（DBP）测量。记录、整理、分析血压测量的结果。结果北京地区3—18岁儿童青少年血压调查的有效数据人数20780人,城区10582人（50．9％）,郊县10198人（49．1％）;男10398人（50．0％）,女10382人（50．0％）。男童血压高于女童[SBP：（106±12）mmHgVS（101±11）mmHg,u=27．14,P〈0．01;DBP：（67±9）mmHgvs（65±8）mmHg,u=14．14,P〈0．01]（1mmHg=0．133kPa）。男女童血压均随年龄增长有逐渐增高的趋势,且SBP上升幅度较DBP高。城区儿童SBP和DBP的平均水平低于郊县儿童[SBP：（103±12）mmHgVS（104±12）mmHg,u=2．55,P〈O．05;DBP：（66±8）mmHgVS（67±9）mmHg,u=6．73,P〈0．01]。血压与年龄、身高、体重及体块指数（BMI）均有显著的正相关（P〈0．001）,收缩压与各变量的相关程度均较舒张压高。依据1987年北京市6—18岁儿童青少年性别年龄别血压标准,本次调查6～18岁儿童青少年高血压检出率为8．1％。结论获得了北京地区儿童青少年血压的分布特征;血压值与儿童的性别、年龄、身高、体重和BMI相关。     

儿童晕厥临床诊治研究的发展与未来

儿童晕厥在临床常见,严重影响儿童的身心健康.儿童晕厥诊断关键技术的建立、诊断程序及个体化治疗新策略的提出,显著提高了儿童晕厥的诊治水平.基于研究成果,我国先后制定了多部儿童晕厥诊治指南与专家共识,并在国际期刊颁布了儿童和青少年晕厥指南,充分发挥了中国在国际儿童晕厥诊治领域的引领作用.今后尚需进一步开展儿童晕厥的流行病学研究,优化儿童晕厥预警体系以及干预与预防新策略,进一步推进儿童晕厥事业的发展.     

儿童脓毒性休克诊治专家共识--我们需要关注哪些变化

《儿童脓毒性休克（感染性休克）诊治专家共识（2015版）》已发表,是在国际指南的引领下,并结合国内外大量研究文献,在2006年制定的《儿科感染性休克（脓毒性休克）诊断治疗推荐方案》基础上,主要就儿童脓毒性休克定义、诊断和早期集束化治疗方案进行了部分修订。《儿童脓毒性休克（感染性休克）诊治专家共识（2015版）》的制定旨在指导临床一线医师对儿童脓毒性休克早期识别和早期积极干预,并进一步降低病死率和改善预后。     

Identifying relevant areas of functioning in children and youth with Cerebral Palsy using the ICF-CY coding system: From whose perspective?

AimsA standardized methodology endorsed by the World Health Organization was used to select the most relevant International Classification of Functioning, Disability and Health for children and youth (ICF-CY) categories to inform the development of the ICF Core Sets for CY with Cerebral Palsy (CP). The aim of this study was to appraise comparatively the results of the four studies included in the preparatory phase of the project exploring relevant areas of functioning in CY with CP.MethodsICF-CY categories identified in the preparatory studies – systematic review, global expert survey, qualitative study, and clinical study – were ranked. We compared the ranking percentile scores of the categories across studies.ResultsEach study emphasized different ICF-CY components and provided unique categories. Professionals from the health, education and social sectors described areas of functioning that were well distributed across the ICF-CY components (global expert survey), CY with CP and caregivers highlighted areas within the components activity and participation (a & p) and environmental factors (qualitative study), while the research community and clinical encounters mainly focused on body functions and a & p (systematic review and clinical study).InterpretationThis study highlights the need to consider all relevant perspectives when describing the functional profile of CY with CP.     

Comparing contents of outcome measures in cerebral palsy using the international classification of functioning (ICF-CY): A systematic review

The International Classification of Functioning children and youth version (ICF-CY) provides a universal framework for defining and classifying functioning and disability in children worldwide. To facilitate the application of the ICF in practice, ICF based-tools like the “ICF Core Sets” are being developed. In the context of the development of the ICF-CY Core Sets for children with Cerebral Palsy (CP), the aims of this study were as follows: to identify and compare the content of outcome measures used in studies of children with CP using the ICF-CY coding system; and to describe the most frequently addressed areas of functioning in those studies. We searched multiple databases likely to capture studies involving children with CP from January 1998 to March 2012. We included all English language articles that studied children aged 2–18 years and described an interventional or observational study. Constructs of the outcome measures identified in studies were linked to the ICF-CY by two trained professionals. We found 231 articles that described 238 outcome measures. The outcome measures contained 2193 concepts that were linked to the ICF-CY and covered 161 independent ICF-CY categories. Out of the 161 categories, 53 (33.5%) were related to body functions, 75 (46%) were related to activities/participation, 26 (16.1%) were related to environmental factors, and 7 (4.3%) were related to body structures. This systematic review provides information about content of measures that may guide researchers and clinicians in their selection of an outcome measure for use in a study and/or clinical practice with children with CP.     

Toolbox of multiple-item measures aligning with the ICF Core Sets for children and youth with cerebral palsy

Selecting appropriate measure(s) for clinical and/or research applications for children and youth with Cerebral Palsy (CP) poses many challenges. The newly developed International Classification of Functioning, Disability and Health (ICF) Core Sets for children and youth with CP serve as universal guidelines for assessment, intervention and follow-up. The aims of this study were: 1) to identify valid and reliable measures used in studies with children and youth with CP, 2) to characterize the content of each measure using the ICF Core Sets for children and youth with CP as a framework, and finally 3) to create a toolbox of psychometrically sound measures covering the content of each ICF Core Set for children and youth with CP. All clearly defined multiple-item measures used in studies with CP between 1998 and 2015 were identified. Psychometric properties were extracted when available. Construct of the measures were linked to the ICF Core Sets. Overall, 83 multiple-item measures were identified. Of these, 68 measures (80%) included reliability and validity testing. The majority of the measures were discriminative, generic and designed for school-aged children. The degree to which measures with proven psychometric properties represented the ICF Core Sets for children and youth with CP varied considerably. Finally, 25 valid and reliable measures aligned highly with the content of the ICF Core Sets, and as such, these measures are proposed as a novel ICF Core Sets-based toolbox of measures for CP. Our results will guide professionals seeking appropriate measures to meet their research and clinical needs worldwide.     

Genetic predisposition to cancer: Surveillance and intervention

Cancer is one of the leading causes of early mortality for children and adolescents. Identifiable genetic cancer predisposition conditions account for a growing proportion of pediatric and adolescent cancer, likely due to increasing knowledge about various predisposition conditions, more widespread cancer genetic counseling, and available diagnostics. Greater awareness, data-driven surgical intervention and clinical surveillance can help facilitate cancer prevention and early detection at cancer stages more amenable to cure. An extensive literature review of published studies and expert opinion with consensus guidelines are reviewed. Specific syndromes where genetics, imaging and surgical intervention are utilized to benefit affected patients and families are presented. In many tumor predisposition syndromes, the underlying genetic diagnosis is made concurrently, or after, malignancy is identified. Improved recognition of underlying predispositions, along with appropriate surgical interventions and imaging surveillance should lead to increased patient survival.     

新生儿脑电生理监测分级管理专家共识北大核心CSCD

美国临床神经生理学协会已经发表了新生儿脑电图监测指南,中国也发表了新生儿振幅整合脑电图(amplitude-integrated electroencephalogram,aEEG)专家共识。由于缺乏脑电监测设备和专业解读人员,不同级别的新生儿病房很难严格按照指南或共识进行脑电监测。中华医学会儿科学分会新生儿学组成立了由新生儿、儿童神经和神经电生理专业人员组成的专家组对已经发表的指南和专家共识及相关领域的文献进行审查,建立了适用于不同级别新生儿病房脑电监测的分层管理建议。基于视频脑电图和aEEG特点,根据当地医疗资源和患儿疾病特征,专家组认为视频脑电图和aEEG可以互相补充应用,适用于不同级别的新生儿病房。该共识对促进新生儿、儿童神经和神经电生理专业人员之间的合作和远程脑电监测实施提出了建议。     

Evaluation of mobile phone applications to support medication adherence and symptom management in oncology patients

Mobile phone applications (apps), may support pediatric oncology patients with medication and disease management. A scoping review of the literature, a search of the iTunes App and Google Play Stores, was conducted to identify medication and symptom management apps for adult and pediatric oncology patients. Pooled results yielded 28 apps which were assessed for quality using the Mobile Application Rating Scale, with mean overall scores ranging from 2.8 to 4.3. Most apps received low scores in the Engagement domain. Our study assessed the quality of available mobile oncology apps and identified areas for improvement in design and function.     

A scoping review of pediatric transplant education

Background

Education is crucial for pediatric patients and caregivers throughout the transplant continuum, yet data are lacking around which interventions are effective and in what circumstances.

Methods

We undertook a scoping review with the objectives of (a) describing the types, effects, and outcomes of patient-focused educational interventions before and after pediatric transplant and (b) understanding the educational experiences of patients and caregivers. Five scientific databases were explored for relevant literature using the JBI methodology. Educational interventions published in English, targeting pediatric solid organ transplant patients (0–25 years) and their caregivers were included. Relevant data from eligible articles (n = 27) were extracted and summarized.

Results

Eighteen articles describing 17 educational interventions were identified for objective A, and nine articles qualitatively assessing patient or parental learning needs were identified for objective B. Most interventions were directed toward teenage patients and their caregivers post kidney transplant, primarily focusing on medication self-management and adherence, or providing general information on transplant using multicomponent delivery formats. Most interventions achieved statistically significant improvements in knowledge (n = 8/9) and patients or caregivers expressed satisfaction with the intervention (n = 7/7) but health-related outcomes such as medication adherence (n = 2/6) or behavior change (n = 1/3) rarely achieved statistically significant results. In objective B, patients and caregivers described the transplant process as overwhelming, but indicated that social supports and education helped them cope. Participants consistently wanted more information than they received.

Conclusion

Caregivers and pediatric patients value transplant education, but high-quality studies are limited. Since education is a fundamental part of the transplant process, future research in this area should be prioritized.