Cerebral Palsy

脑性瘫痪
  • 文章类型: Journal Article
    背景:评估脑瘫(CP)儿童的肌肉痉挛对于确定最有效的治疗策略至关重要。本范围审查评估了当前用于评估肌肉痉挛状态的方法,突出传统技术和创新技术,以及它们各自的优点和局限性。
    方法:搜索(至2024年4月)使用了诸如肌肉痉挛,脑瘫,和评估方法。选择标准包括涉及CP儿童的文章,客观/主观地评估痉挛,比较方法,或评估方法的有效性。
    结果:从最初的1971篇文章中,30符合我们的纳入标准。这些研究共同评估了各种技术,包括完善的临床量表,如改良的Ashworth量表和Tardieu量表,实时超声弹性成像和惯性传感器等尖端技术。值得注意的是,强调了创新方法,例如动态评估运动范围量表和刚度工具,因为它们有可能提供更细致和精确的痉挛评估。这篇评论揭示了一个重要的见解:虽然传统方法方便且广泛使用,他们往往在可靠性和客观性方面不足。
    结论:评论讨论了每种方法的优点和局限性,并得出结论,需要更可靠的方法来更准确地测量肌肉痉挛的水平。
    BACKGROUND: Evaluating muscle spasticity in children with cerebral palsy (CP) is essential for determining the most effective treatment strategies. This scoping review assesses the current methods used to evaluate muscle spasticity, highlighting both traditional and innovative technologies, and their respective advantages and limitations.
    METHODS: A search (to April 2024) used keywords such as muscle spasticity, cerebral palsy, and assessment methods. Selection criteria included articles involving CP children, assessing spasticity objectively/subjectively, comparing methods, or evaluating method effectiveness.
    RESULTS: From an initial pool of 1971 articles, 30 met our inclusion criteria. These studies collectively appraised a variety of techniques ranging from well-established clinical scales like the modified Ashworth Scale and Tardieu Scale, to cutting-edge technologies such as real-time sonoelastography and inertial sensors. Notably, innovative methods such as the dynamic evaluation of range of motion scale and the stiffness tool were highlighted for their potential to provide more nuanced and precise assessments of spasticity. The review unveiled a critical insight: while traditional methods are convenient and widely used, they often fall short in reliability and objectivity.
    CONCLUSIONS: The review discussed the strengths and limitations of each method and concluded that more reliable methods are needed to measure the level of muscle spasticity more accurately.
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  • 文章类型: Journal Article
    背景:全身运动评估(GMA)被推荐用于早期发现脑瘫的风险,但需要训练有素的临床专家。我们的目标是在挪威高危婴儿队列中实施远程GMA的家庭和医院拍摄,以及评估父母在家中拍摄婴儿的经历。
    方法:这项知识转化研究使用了前瞻性队列设计,包括在挪威中部地区卫生局的三个地点进行神经发育随访的参与者。父母在足月后的121-146和151-176周之间收集了两张烦躁的一般动作的家庭电影。在足月后12+1和17+6周之间在医院收集另外的膜。所有拍摄的指导指南都是In-MotionApp标准。视频已传输到远程GMA团队,并根据Prechtl的GMA标准将其分类为“GMA可评分”或“GMA不可评分”。家长使用5点Likert量表回应在线调查,以收集有关他们观点的信息,经验,以及在家拍摄婴儿可能带来的担忧。
    结果:来自95个家庭的一百一十二名婴儿参加了研究。92个(96.8%)家庭传输了177个家庭视频。其中84(92%)在当地医院拍摄了95个视频。所有177个家庭视频都是“GMA可评分”,而95个医院视频中有3个(3,1%)被归类为“GMA不可评分”。由于技术错误,八个家庭没有对调查做出回应,两个家庭没有收到调查。78名(91.7%)受访者同意或强烈同意家庭拍摄很容易,5名(5.9%)受访者认为他们更担心在家拍摄后孩子的发育。几乎80%的受访者同意GMA的视频可以在家中而不是在医院拍摄。
    结论:本研究加强了父母家庭拍摄和远程GMA的临床实施,以在高风险随访计划中早期发现CP。远程GMA的实施有可能促进早期干预,以根据国际建议改善CP儿童的功能。
    背景:ClinicalTrials.govID:NCT04287166注册日期:27/02/2020。
    BACKGROUND: General Movement Assessment (GMA) is recommended for early detection of risk for cerebral palsy but requires trained clinical experts. We aimed to implement home- and hospital-based filming for remote GMA in a Norwegian high-risk infant cohort, as well as evaluating parents\' experiences in filming their infant at home.
    METHODS: This knowledge translational study used a prospective cohort design including participants referred to neurodevelopmental follow-up across three sites in the Central Norway Regional Health Authority. Two home films of the fidgety type of general movements were collected between 12+1-14+6 and 15+1-17+6 weeks after term by parents. An additional film was collected at the hospital between 12+1 and 17+6 weeks after term. The instructional guide for all filming was the In-Motion App standards. Videos were transferred to a remote GMA team and classified as either \"GMA scorable\" or \"GMA not scorable\" based on Prechtl\'s GMA standards. Parents responded to an online survey using a 5-point Likert scale to collect information about their perspectives, experiences, and possible worries by filming their infant at home.
    RESULTS: One-hundred-and-two infants from 95 families participated. Ninety-two (96.8%) families transferred 177 home-based videos. Eighty-four (92%) of these had 95 videos taken in their local hospital. All 177 home-videos were \"GMA scorable\" and three (3,1%) out of 95 hospital-based videos were classified as \"GMA not scorable\". Eight families did not respond to the survey and two families did not receive the survey due to a technical error. Seventy-eight (91.7%) respondents agreed or strongly agreed that it was easy to perform home filming and five (5.9%) agreed that they were more worried about their child`s development after filming at home. Almost 80% of respondents agreed that a video for GMA can be taken at home instead of in hospital.
    CONCLUSIONS: This study strengthens the clinical implementation of home filming by parents and remote GMA for early detection of CP in high-risk follow-up programs. The implementation of remote GMA has the potential to facilitate early intervention to improve function in children with CP in line with international recommendations.
    BACKGROUND: ClinicalTrials.gov ID: NCT04287166 Date of registration: 27/02/2020.
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  • 文章类型: Journal Article
    目的:为了确定从一种新型的渐进式外侧步升试验(LSUT)估计功能肌肉力量是否可行,可靠,与脑瘫(CP)儿童的体育锻炼有关。
    方法:横断面;重测信度受试者/患者:患有CP的儿童和通常发展中的对照儿童(n=45/组)。
    方法:完成了具有10、15和20cm台阶高度的LSUT。4周后,在20名CP儿童中重复了这种情况。基于台阶高度和完成的重复次数计算LSUT的综合得分。使用戴在脚踝和臀部的监视器评估身体活动。
    结果:只有4名(13%)CP患儿在没有帮助的情况下无法完成横向递升重复。所有儿童都能在协助下完成至少1次重复,尽管在15和20厘米的步高比10厘米的步高需要帮助的CP儿童多两倍(p<0.01)。CP儿童的LSUT表现降低了59%至63%,脚踝评估的体力活动降低37%,髋关节的体力活动比对照组低22%(所有p<0.01)。对于不同台阶高度的LSUT表现,类别内相关系数为0.91至0.96,而对于综合评分为0.97。所有LSUT表现指标均与CP患儿的踝关节体力活动呈正相关(r范围=0.43至0.47,均p<0.01)。仅20cm处的表现和综合评分与髋关节体力活动呈正相关(r分别为0.33和0.31,两者p<0.05)。当年龄和性别得到统计学控制时,踝关节和髋关节的LSUT表现与体力活动之间的关系增加(模型r范围=0.55至0.60,所有p<0.001)。
    结论:从一种新型的渐进性LSUT评估功能性肌肉力量是可行的,可靠,与CP患儿的体力活动呈正相关。
    OBJECTIVE: To determine if estimates of functional muscle strength from a novel progressive lateral-step-up test (LSUT) are feasible, reliable, and related to physical activity in children with cerebral palsy (CP).
    METHODS: Cross-sectional; test-retest reliability Subjects/Patients: Children with CP and typically developing control children (n = 45/group).
    METHODS: An LSUT with 10, 15, and 20 cm step heights was completed. It was repeated 4 weeks later in 20 children with CP. A composite score of LSUT was calculated based on the step height and number of repetitions completed. Physical activity was assessed using monitors worn on the ankle and hip.
    RESULTS: Only 4 (13%) of the children with CP were unable to complete a lateral step-up repetition without assistance. All children were able to complete at least 1 repetition with assistance, though more than twice as many children with CP required assistance at 15 and 20 cm step heights than at the 10 cm step height (p < 0.01). Children with CP had 59 to 63% lower LSUT performance, 37% lower physical activity assessed at the ankle, and 22% lower physical activity assessed at the hip than controls (all p < 0.01). The intra-class correlation coefficient ranged from 0.91 to 0.96 for LSUT performance at the different step heights and was 0.97 for the composite score. All LSUT performance measures were positively related to ankle physical activity in children with CP (r range = 0.43 to 0.47, all p < 0.01). Only performance at 20 cm and the composite score were positively related to hip physical activity (r = 0.33 and 0.31, respectively, both p < 0.05). The relationship between the LSUT performance and physical activity at both the ankle and hip increased when age and sex were statistically controlled (model r range = 0.55 to 0.60, all p < 0.001).
    CONCLUSIONS: Estimates of functional muscle strength from a novel progressive LSUT are feasible, reliable, and positively related to physical activity in children with CP.
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  • 文章类型: Journal Article
    脑瘫(CP)和其他神经肌肉疾病的下尿路功能障碍(LUTD)可表现为导致肾积水的慢性滞留,复发性尿路感染(UTI),和石头形成。每当LUTD的保守治疗因任何原因失败时,它被认为是复杂的LUTD,其中手术方法是必要的。皮肤膀胱造口术(CV)是一个简单的,耐受性良好,以及保护上消化道的潜在可逆程序。我们描述了我们对这个复杂人群使用CV的经验。
    在2015年至2019年期间被送往儿科长期护理单位接受姑息治疗的CP和其他神经肌肉疾病儿童被纳入研究。他们表现出多系统的参与,多药,和粗大运动功能分类系统的4或5级。我们回顾性研究了该人群的适应证和CV结果。
    在52名入院患者中,18呈现了带有UTI的LUTD(n:18;100%),石头(n:5;28%),进行性输尿管肾积水(n:3;17%),或石头(n:2;11%)。保守的初始管理(导管插入,预防性抗生素)在一半的病例中有效。其余9例被定义为复杂的LUTD并接受了CV。平均随访11.3个月后,随访结果显示,所有9例(100%)患者的肾积水得到改善.9名患者中有8名不再出现复发性尿路感染,尽管3例患者需要膀胱冲洗;CV后膀胱结石未复发;肾结石需要进一步干预.由于造口狭窄,2例(11%)在术后12个月和24个月需要修改CV。
    CV是一种相对简单而有效的程序,代表了在复杂的长期住院儿科姑息治疗患有神经性膀胱的患者中管理复杂LUTD的实用解决方案。
    UNASSIGNED: Lower urinary tract dysfunction (LUTD) in cerebral palsy (CP) and other neuromuscular diseases can present with chronic retention that leads to hydronephrosis, recurrent urinary tract infections (UTI), and stone formation. Whenever the conservative treatment of LUTD fails for any reason, it is considered to be complicated LUTD, in which a surgical approach is warranted. Cutaneous vesicostomy (CV) is a simple, well-tolerated, and potentially reversible procedure that protects the upper tracts. We describe our experience using CV for this complex population.
    UNASSIGNED: Children with CP and other neuromuscular diseases admitted to pediatric long-term care units for palliative care between 2015 and 2019 were included in the study. They present multi-system involvement, polypharmacy, and Gross Motor Function Classification System levels of 4 or 5. We retrospectively studied this population\'s indications and results of CV.
    UNASSIGNED: Of the 52 admitted patients, 18 presented LUTD with UTI (n:18; 100%), stones (n:5; 28%), progressive hydroureteronephrosis (n:3; 17%), or stones (n:2; 11%). Conservative initial management (catheterizations, prophylaxis antibiotics) was effective in half the cases. The remaining nine were defined as complicated LUTD and underwent CV. After a mean follow-up of 11.3 months, the follow-up showed improved hydronephrosis in all nine (100%) patients. Recurrent UTIs were no longer seen in eight of nine patients, although three patients required bladder irrigations; bladder stones did not recur after CV; the kidney stones needed further intervention. Revision of the CV was required in two (11%) cases at 12 and 24 months postoperatively due to stoma stenosis.
    UNASSIGNED: CV is a relatively simple and effective procedure representing a pragmatic solution for managing complicated LUTD in complex long-term institutionalized pediatric palliative care patients with neuropathic bladders.
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  • 文章类型: Journal Article
    空气污染与大脑结构变化有关,神经发生的中断,和神经发育障碍。产前暴露于环境空气污染与脑瘫(CP)风险之间的关系,这是儿童时期最常见的运动障碍,还没有被彻底调查。
    为了评估安大略省人口队列中出生的足月妊娠儿童的产前居住暴露于环境空气污染与CP风险之间的关联,加拿大。
    安大略省基于人群的队列研究,加拿大使用链接,全省卫生行政数据库。参与者是2002年4月1日至2017年3月31日在安大略省医院出生的单胎足月分娩(≥37孕周)。数据从2022年1月至12月进行了分析。
    直径为2.5μm(PM2.5)或更小的环境细颗粒物的周平均浓度,二氧化氮(NO2),根据基于卫星的估计和地面监测数据,由分娩时报告的产妇居住地分配的怀孕期间的臭氧(O3)。
    对于从出生到18岁的儿童,通过单一住院诊断或至少2次门诊诊断来确定CP病例。
    本研究包括1587935对达到足月妊娠的母子,其中3170名(0.2%)儿童被诊断为CP。研究人群的平均(SD)母亲年龄为30.1(5.6)岁,男性为811745名婴儿(51.1%)。产前环境PM2.5浓度的每IQR增加(2.7μg/m3)与CP的累积风险比(CHR)为1.12(95%CI,1.03-1.21)相关。男性婴儿的CHR(1.14;95%CI,1.02-1.26)高于女性婴儿的CHR(1.08;95%CI,0.96-1.22)。在研究人群中,未发现产前PM2.5暴露和CP的特定易感性窗口。未发现产前NO2或O3暴露和CP风险的关联或易感性窗口。
    在这项加拿大单胎足月出生的大型队列研究中,产前环境PM2.5暴露与后代CP风险增加相关.需要进一步的研究来探索这种关联及其潜在的生物学途径,这可以促进对生命早期CP环境危险因素的识别。
    UNASSIGNED: Air pollution is associated with structural brain changes, disruption of neurogenesis, and neurodevelopmental disorders. The association between prenatal exposure to ambient air pollution and risk of cerebral palsy (CP), which is the most common motor disability in childhood, has not been thoroughly investigated.
    UNASSIGNED: To evaluate the associations between prenatal residential exposure to ambient air pollution and risk of CP among children born at term gestation in a population cohort in Ontario, Canada.
    UNASSIGNED: Population-based cohort study in Ontario, Canada using linked, province-wide health administrative databases. Participants were singleton full term births (≥37 gestational weeks) born in Ontario hospitals between April 1, 2002, and March 31, 2017. Data were analyzed from January to December 2022.
    UNASSIGNED: Weekly average concentrations of ambient fine particulate matter with a diameter 2.5 μm (PM2.5) or smaller, nitrogen dioxide (NO2), and ozone (O3) during pregnancy assigned by maternal residence reported at delivery from satellite-based estimates and ground-level monitoring data.
    UNASSIGNED: CP cases were ascertained by a single inpatient hospitalization diagnosis or at least 2 outpatient diagnoses for children from birth to age 18 years.
    UNASSIGNED: The present study included 1 587 935 mother-child pairs who reached term gestation, among whom 3170 (0.2%) children were diagnosed with CP. The study population had a mean (SD) maternal age of 30.1 (5.6) years and 811 745 infants (51.1%) were male. A per IQR increase (2.7 μg/m3) in prenatal ambient PM2.5 concentration was associated with a cumulative hazard ratio (CHR) of 1.12 (95% CI, 1.03-1.21) for CP. The CHR in male infants (1.14; 95% CI, 1.02-1.26) was higher compared with the CHR in female infants (1.08; 95% CI, 0.96-1.22). No specific window of susceptibility was found for prenatal PM2.5 exposure and CP in the study population. No associations or windows of susceptibility were found for prenatal NO2 or O3 exposure and CP risk.
    UNASSIGNED: In this large cohort study of singleton full term births in Canada, prenatal ambient PM2.5 exposure was associated with an increased risk of CP in offspring. Further studies are needed to explore this association and its potential biological pathways, which could advance the identification of environmental risk factors of CP in early life.
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  • 文章类型: Journal Article
    患有神经肌肉疾病的个体表现出运动控制缺陷和下肢无力的组合,从而导致膝关节伸展不足,其特征在于过度的站立阶段膝关节屈曲。目前可用的临床治疗方案缺乏长期改善膝关节伸展功能不足的证据。我们之前的工作测试了可穿戴式机器人外骨骼,在膝盖上施加了精确定时的辅助扭矩,结果显示,对于脑瘫儿童来说,在行走过程中膝盖伸展力立即增加。在一个急性的实践期间持续改善。当我们对膝盖伸展施加交错辅助和阻力时,我们观察到膝关节伸展的改善和肌肉激活的增加,表明随着时间的推移,肌肉增强的潜力。需要额外的,高质量的试验,以评估剂量的影响,对于这些患者人群,观察下肢功能持续改善所需的训练强度和数量。这项随机交叉研究(ClinicalTrials.gov:NCT05726591)旨在确定是否在临床环境之外使用机器人外骨骼进行12周的地面步态训练,在最初的诊所住宿期之后,对行走能力有有益的影响,肌肉活动和整体运动功能。参与者将被随机分配完成外骨骼干预或继续他们的标准治疗12周。然后交叉到另一个研究部分。主要结果指标是步行过程中膝盖伸展角的峰值变化;次要结果指标包括步态速度,力量,以及经过验证的运动功能和活动能力的临床量表。评估将在干预前后和干预后6周完成,安全和合规性将在整个过程中受到监控。我们假设在临床环境之外的12周外骨骼干预将在研究结果测量方面显示出比标准疗法更大的改善。
    Individuals with neuromuscular disorders display a combination of motor control deficits and lower limb weakness contributing to knee extension deficiency characterized by exaggerated stance phase knee flexion. There is a lack of evidence for long-term improvement of knee extension deficiency with currently available clinical treatment programs. Our previous work testing a wearable robotic exoskeleton with precisely timed assistive torque applied at the knee showed immediate increases in knee extension during walking for children with cerebral palsy, which continued to improve over an acute practice period. When we applied interleaved assistance and resistance to knee extension, we observed improvements in knee extension and increased muscle activation indicating the potential for muscle strengthening when used over time. There is a need for additional, high-quality trials to assess the impact of dosage, intensity and volume of training necessary to see persistent improvement in lower limb function for these patient populations. This randomized crossover study (ClinicalTrials.gov: NCT05726591) was designed to determine whether 12 weeks of overground gait training with a robotic exoskeleton outside of the clinical setting, following an initial in clinic accommodation period, has a beneficial effect on walking ability, muscle activity and overall motor function. Participants will be randomized to either complete the exoskeleton intervention or continue their standard therapy for 12 weeks first, followed by a crossover to the other study component. The primary outcome measure is change in peak knee extension angle during walking; secondary outcome measures include gait speed, strength, and validated clinical scales of motor function and mobility. Assessments will be completed before and after the intervention and at 6 weeks post-intervention, and safety and compliance will be monitored throughout. We hypothesize that the 12-week exoskeleton intervention outside the clinical setting will show greater improvements in study outcome measures than the standard therapy.
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  • 文章类型: Journal Article
    这项研究旨在确定机器人康复对脑瘫(CP)儿童运动功能和步态的影响以及机器人类型的影响。纳入标准为患有任何类型CP的儿童,机器人康复研究,非机器人康复比较组,与运动功能和步态相关的结果,和随机对照试验。PubMed,Embase,科克伦图书馆,CINAHL,搜索了WebofScience数据库。使用物理治疗证据数据库评估偏倚风险。选择了7项研究,共228名参与者。在三项比较机器人康复组和对照组的研究中,运动功能得到了显着改善(标准平均差[SMD],0.79;95%置信区间[CI],0.34-1.24;I2=73%)。在五项比较机器人康复和对照组的研究中,步态没有显着改善(SMD,0.27;95%CI,-0.09至0.63;I2=45%)。按机器人类型比较效果时,机器人辅助闸门训练(RAGT)在两个运动功能(SMD,0.89;95%CI,0.36-1.43;I2=77%)和步态(SMD,0.62;95%CI,0.12-1.11;I2=44%)。机器人康复有效改善了运动功能,在机器人类型中,发现RAGT可有效改善运动功能和步态。
    This study was to determine the effects of robot rehabilitation on motor function and gait in children with cerebral palsy (CP) and the effect of robot type. Inclusion criteria were children with any type of CP, robot rehabilitation studies, non-robot rehabilitation comparison groups, outcomes related to motor function and gait, and randomized controlled trials. PubMed, Embase, Cochrane Library, CINAHL, and Web of Science databases were searched. Risk of bias was assessed using physiotherapy evidence database. Seven studies with a total of 228 participants were selected. Motor function was significantly improved in three studies comparing robot rehabilitation and control groups (standard mean difference [SMD], 0.79; 95% confidence intervals [CIs], 0.34-1.24; I 2=73%). Gait was not significantly improved in five studies comparing robot rehabilitation and control groups (SMD, 0.27; 95% CI, -0.09 to 0.63; I 2=45%). When comparing effects by robot type, robotic-assisted gate training (RAGT) showed significant improvements in both motor function (SMD, 0.89; 95% CI, 0.36-1.43; I 2=77%) and gait (SMD, 0.62; 95% CI, 0.12-1.11; I 2=44%). Robot rehabilitation effectively improved motor function, and among the robot types, RAGT was found to be effective in improving motor function and gait.
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  • 文章类型: Journal Article
    本文总结了2003年至2023年过去20年用于小儿脑瘫(CP)康复设备的刺激方法的研究进展。我们还为基于人工智能的康复设备的创新研发提供思路。
    通过一定的搜索策略,在中国国家知识网络数据库(CNKI)中搜索关键词,万方数据库知识服务平台,重庆贵宾信息服务,PubMed,WebofScience,科克伦,ScienceDirect,Medline,Embase,IEEE数据库。共检索到相关文章3049篇,包括49篇文章,提到康复设备的研发。我们排除了非特定于CP儿童的文章,是重复的或不相关的文献,缺少数据,全文不可用,这篇文章没有描述与康复设备一起用于CP儿童的刺激方法,不是中文和英文,以及评论和评论的类型。
    物理刺激是CP儿童康复设备的主要刺激方式。力刺激是物理刺激的主要方式,有17篇文章验证了基于力刺激的设备的临床疗效。
    对小儿脑瘫康复设备的刺激模式的研究很可能集中在模拟称为“推拿手法”的中药的力量上。“当这种方法与人工智能和个性化方向相结合时,我们相信这将为将来开发CP儿童的新型疗法奠定基础。
    UNASSIGNED: This paper summarizes the research progress into stimulation methods used in rehabilitation equipment for pediatric cerebral palsy (CP) for the past 20 years from 2003 to 2023. We also provide ideas for innovative research and development of artificial intelligence-based rehabilitation equipment.
    UNASSIGNED: Through a certain search strategy, Keywords are searched in the China National Knowledge Network Database (CNKI), the Wanfang Database knowledge service platform, the Chongqing VIP information service, PubMed, Web of Science, Cochrane, ScienceDirect, Medline, Embase, and IEEE database. A total of 3,049 relevant articles were retrieved, and 49 articles were included that mentioned research and development of rehabilitation equipment. We excluded articles that were not specific to children with CP, were duplicated or irrelevant literature, were missing data, the full article was not available, the article did not describe the method of stimulation used with the rehabilitation equipment on children with CP, were not Chinese and English, and were the types of reviews and commentaries.
    UNASSIGNED: Physical stimulation is the main stimulation method of rehabilitation equipment for children with CP. Force stimulation is the main mode of physical stimulation, and there are 17 articles that have verified the clinical efficacy of force stimulation-based equipment.
    UNASSIGNED: Research on the stimulation mode of pediatric cerebral palsy rehabilitation equipment is likely to focus on simulating the force of the Chinese medicine called \"tuina manipulation.\" When this method is combined with artificial intelligence and personalized direction we believe this will lay the foundation for future development of a novel therapy for children with CP.
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  • 文章类型: Journal Article
    脑瘫(CP)儿童的照顾者对其子女的生存和健康至关重要。尽管照顾者特别要求责任,关于他们经历的文献是有限的。
    这项研究探索了照顾者为CP儿童提供护理的经验。
    采用了使用半结构化访谈的探索性定性研究设计。所有采访都是录音,逐字转录,并在Colaizzi的七步方法指导下进行分析。
    出现了两个主题:护理方面的挑战和提供护理的积极经验。照顾者面临财务,心理,社会和身体挑战,如污名化,缺乏工作便利,由于提供护理的需求,时间限制,紧张的家庭关系,隔离,排除,在照顾他们的角色中情绪和身体疲惫。尽管面临挑战,他们也有成就感,积极的经验。看护者变得更有弹性,随着时间的推移,一些关系得到加强,对CP状况的认识也得到提高.
    照顾患有CP的孩子具有挑战性。脑瘫是一种永久性残疾;因此,一个整体,从长远角度来看,支持照顾者是必要的,以确保他们能够充分照顾他们的孩子。
    需要为护理人员提供各种支撑结构,以减轻护理负担。有必要建立可用的支撑结构与看护者观察并因此利用这些结构的方式之间的关系。这项研究强调了护理人员的经验和需求,以告知利益相关者干预策略。
    UNASSIGNED: Caregivers of children with cerebral palsy (CP) are critical in the survival and well-being of their children. Despite the caregivers\' particularly demanding responsibilities, literature on their experiences is limited.
    UNASSIGNED: This study explored the caregivers\' experiences of providing care to children with CP.
    UNASSIGNED: An explorative qualitative study design using semi-structured interviews was employed. All interviews were audio-recorded, transcribed verbatim and analysed guided by Colaizzi\'s seven-step methodology.
    UNASSIGNED: Two themes emerged: the challenges in caregiving and positive experiences of providing care. Caregivers faced financial, psychological, social and physical challenges such as stigmatisation, a lack of work accommodations, time constraints due to demands of providing care, strained family relations, isolation, exclusion, emotional and physical exhaustion in their caregiving role. Despite the challenges, they also had fulfilling, positive experiences. Caregivers became more resilient, some relationships were strengthened and awareness of the CP condition increased over time.
    UNASSIGNED: Caring for a child with CP is challenging. Cerebral palsy is a permanent disability; therefore, a holistic, long-term perspective to supporting caregivers is necessary to ensure they can care for their children adequately.
    UNASSIGNED: There is a need for various support structures for caregivers to lessen the burden of care. It is necessary to establish the relationships between the support structures available and the way that these structures are viewed and consequently utilised by the caregivers. This study highlights the experiences and needs of caregivers to inform stakeholders on intervention strategies.
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  • 文章类型: Journal Article
    背景:脑瘫(CP)是非进行性脑损伤,during,或出生后不久。CP与身体素质差有关,这与健康问题和肥胖等继发性疾病的发展有关,心血管疾病,和糖尿病。与没有CP的健康同龄人相比,患有CP的儿童有相当低的VO2峰值,这降低了他们的表现和有氧能力。
    目的:本研究旨在评估CP患儿运动能力和耐力的变化,以及他们的父母和照顾者的疲劳程度,参加心血管耐力训练后。
    方法:这项研究包括16名年龄在7-12岁患有CP(粗大运动功能分类系统I级,II,orIII).参与者完成了为期12周的心血管耐力计划,包括每周三次60分钟的课程,旨在达到他们心率最大值的64-95%。根据美国运动医学学院的指导方针。记录了干预前和干预后的测量结果:六分钟步行所覆盖的距离,最大耗氧量(VO2max)水平,早期活动耐力等级量表,和患者报告的结果测量信息系统(PROMIS)儿科疲劳量表评分和PROMIS父母代理量表和疲劳量表评分。结果:在完成心血管耐力训练后,步行六分钟的距离提高了20.95分,静息心率下降5.19点,VO2最大值为0.06点,早期耐力活动量表4.06分,PROMIS儿科疲劳量表7.29分,PROMIS父代理缩放6.81点,和PROMIS疲劳量表5.07点。最大心率也显示出0.33点的轻微改善(p<0.01)。
    结论:旨在提高心血管耐力的结构化运动方案可以通过提高CP儿童的运动能力和耐力来使他们受益,这反过来可以帮助降低他们的父母和照顾者的疲劳水平。
    BACKGROUND: Cerebral palsy (CP) is non-progressive brain damage that occurs before, during, or shortly after birth. CP is associated with poor physical fitness, which is linked to health problems and the development of secondary illnesses like obesity, cardiovascular disease, and diabetes. Compared to healthy peers without CP, children with CP have considerably lower VO2 peaks, which reduces their performance and aerobic capacity.
    OBJECTIVE: This study aimed to evaluate changes in exercise capacity and endurance among children with CP, as well as fatigue levels among their parents and caregivers, after participation in cardiovascular endurance training.
    METHODS: This study included 16 children aged 7-12 years with CP (Gross Motor Function Classification System levels I, II, or III). Participants completed a 12-week cardiovascular endurance program consisting of 60-minute sessions three times weekly designed to achieve 64-95% of their heart rate maximum,based on the American College of Sports Medicine guidelines. Pre- and post-intervention measurements were recorded for the following: distance covered in a six-minute walk, maximal oxygen consumption (VO2 max) level, Early Activity Scale for Endurance rating, and Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Fatigue Scale score and PROMIS Parent Proxy Scale and Fatigue Scale scores.  Result: Upon completing the cardiovascular endurance training, the distance covered during a six-minute walk improved by 20.95 points, resting heart rate by 5.19 points, VO2 max by 0.06 points, Early Activity Scale for Endurance by 4.06 points, PROMIS Pediatric Fatigue Scale by 7.29 points, PROMIS Parent Proxy Scale by 6.81 points, and PROMIS Fatigue Scale by 5.07 points. The maximum heart rate also showed a slight improvement of 0.33 points (p<0.01).
    CONCLUSIONS: A structured exercise protocol aimed at improving cardiovascular endurance can benefit children with CP by improving their exercise capacity and endurance, which in turn can help decrease fatigue levels among their parents and caregivers.
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