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Trunk Control and Upper Limb Function of Walking and Non-walking Duchenne Muscular Dystrophy Individuals. 行走与非行走杜氏肌营养不良症患者躯干控制与上肢功能。
IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-10-01 Epub Date: 2021-01-07 DOI: 10.1080/17518423.2020.1869337
Ana Lucia Yaeko da Silva Santos, Flaviana Kelly de Lima Maciel, Francis Meire Fávero, Luis Fernando Grossklauss, Cristina Dos Santos Cardoso de Sá

Aim: To verify and compare trunk control and upper limb functionality (ULs) in walking and non-walking DMD individuals, with that of individuals without dystrophinopathies.Method: Cross-sectional study, with children without dystrophinopathy (healthy control group) and in walking and non-walking DMD children evaluated by the following scales: Segmental Control Evaluation Trunk (SATCo); Performance of Upper Limb (PUL) and Jebsen-Taylor Test (JTT).Results: There was a difference between the groups in trunk control and ULs function by the PUL scale, but there was no difference between walking and the reference group in all JTT subtests; The JTT writing subtest was not different between groups. There was a strong correlation between PUL and SATCo, both had a strong correlation with disease staging and a weak correlation with JTT.Conclusions: There is relevance to the evaluation of trunk control and ULs function of walking and non-walking DMD.

目的:验证和比较行走和非行走DMD个体与无肌营养不良症个体的躯干控制和上肢功能(ULs)。方法:横断面研究,对无肌营养不良的儿童(健康对照组)、行走和非行走的DMD儿童采用以下量表进行评估:节段控制评估主干(SATCo);上肢性能(PUL)和Jebsen-Taylor测试(JTT)。结果:两组之间在躯干对照组和ULs功能的PUL量表上存在差异,但在所有JTT亚测试中,步行组与对照组之间无差异;JTT写作子测试在两组间无显著差异。PUL与SATCo相关性强,与疾病分期相关性强,与JTT相关性弱。结论:行走与非行走型DMD的躯干控制与ULs功能评价存在相关性。
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引用次数: 4
Parent Carer Quality of Life and Night-Time Attendance in Non-Ambulant Youth with Neuromuscular Disorders. 患有神经肌肉疾病的不能走动的青少年的父母照顾者的生活质量和夜间出勤率。
IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-10-01 Epub Date: 2021-05-04 DOI: 10.1080/17518423.2021.1908440
Vivienne Travlos, Shane Patman, Jenny Downs, Dana Hince, Andrew C Wilson

Purpose: To describe and explore carer quality of life (QoL) and night-time attendance to their child in parents of non-ambulant youth with Neuromuscular Disorders.Methods: A cross-sectional population-based, comprehensive survey including the Adult Carer QoL (AC-QoL) questionnaire, measures of social context and youths' physical status. Associations between carer-QoL or frequency of parents' night-time attendance with independent variables were explored using linear and logistic regression models, respectively.Results: Parents' perceived lower carer-QoL (mean 76.5/120, SD 18.5) when they attended to their child twice a night or more (n = 17/35) and with shorter time since their child was prescribed noninvasive ventilation (NIV). Parental night-time attendance was not associated with youth's actual use of NIV, but was more likely when youth required assistance to turn in bed, reported frequent sleep discomfort and had more severe joint contractures.Conclusions: To optimize parent carer-QoL, interventions must address parents' frequency of night-time attendance and youths' sleep comfort.

目的:描述和探讨不能走动的青少年神经肌肉疾病患者父母的护理者生活质量(QoL)和夜间照顾子女的情况。方法:采用成人照护者生活质量(AC-QoL)问卷、社会背景测量和青少年身体状况测量等横断面调查方法。采用线性回归模型和逻辑回归模型分别探讨了职业生活质量和父母夜间出勤频率与自变量之间的关系。结果:当父母每晚两次或两次以上(n = 17/35)且孩子使用无创通气(NIV)时间较短时,他们的职业生活质量(平均76.5/120,标准差18.5)较低。父母的夜间出勤与青少年实际使用NIV无关,但当青少年需要帮助才能上床,报告频繁的睡眠不适和更严重的关节挛缩时,这种情况更有可能发生。结论:为了优化父母的照料生活质量,干预措施必须针对父母夜间出勤频率和青少年睡眠舒适度。
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引用次数: 3
Improvements in Speech of Children with Apraxia: The Efficacy of Treatment for Establishing Motor Program Organization (TEMPOSM). 失用症儿童语言能力的改善:建立运动项目组织(TEMPOSM)的疗效。
IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-10-01 Epub Date: 2021-07-09 DOI: 10.1080/17518423.2021.1916113
Hilary E Miller, Kirrie J Ballard, Jenna Campbell, Madison Smith, Amy S Plante, Semra A Aytur, Donald A Robin

Purpose: This study investigated the efficacy of Treatment for Establishing Motor Program Organization (TEMPOSM) in childhood apraxia of speech (CAS).Method: A mixed between- and within-participant design with multiple baselines across participants and behaviors was used to examine acquisition, generalization, and maintenance of skills. TEMPOSM was administered in four one-hour sessions a week over a four-week period for eleven participants (ages 5 to 8), allocated to either an immediate treatment group or a wait-list control group. Acoustic and perceptual variables were measured at baseline, immediate post-treatment, and one-month post-treatment.Results: Children demonstrated significant improvements in specific acoustic measures of segmentation and lexical stress, as well as perceptual measures of fluency, lexical stress, and speech-sound accuracy. Treatment and generalization effects were maintained one-month post-treatment with generalization to untreated stimuli.Conclusion: TEMPOSM was efficacious in improving segmental and suprasegmental impairments in the speech of children with CAS.

目的:探讨建立运动项目组织(TEMPOSM)治疗儿童言语失用症(CAS)的疗效。方法:采用参与者之间和参与者内部的混合设计,采用跨参与者和行为的多个基线来检查技能的习得、泛化和维持。在为期四周的时间里,对11名参与者(5至8岁)进行了四次每周一小时的TEMPOSM治疗,分配到立即治疗组或等候名单对照组。在基线、治疗后立即和治疗后一个月测量声学和感知变量。结果:儿童在切分和词汇重音的特定声学测量,以及流利度、词汇重音和语音准确性的感知测量方面表现出显著的改善。治疗和推广效果在治疗后一个月保持,对未治疗的刺激进行推广。结论:TEMPOSM可有效改善CAS患儿的节段性和超节段性语言障碍。
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引用次数: 5
Could Lumbar Lordosis Angle Be A Predictor of Functionality in Children with Spina Bifida? A Cross-Section Study. 腰椎前凸角可以作为脊柱裂患儿功能的预测指标吗?横断面研究。
IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-10-01 Epub Date: 2021-01-03 DOI: 10.1080/17518423.2020.1869853
Osman Karaca, Muhammed Kılınç

Aims: This study aimed to investigate the relationship between lumbar lordosis angle (LLA) and trunk functions, sitting balance, functional independence, and lesion level in children with spina bifida (SB).Methods: Thirty children with SB were included. LLA was measured with a flexible ruler. The Pediatric Functional Reach Test (PRT), Trunk Impairment Scale (TIS), Functional Independence Measure for Children (WeeFIM), and International Myelodysplasia Study Group Criteria were used to evaluate sitting balance, trunk functions, functional independence, and motor lesion level respectively. The correlations were performed by using Spearman's correlation test.Results: There were significant correlations between the LLA and PRT, TIS, and WeeFIM results. Also, a significant correlation was found between the LLA and lesion level (p < .05).Conclusions: The development of the LLA in the normal range should be supported in rehabilitation approaches aiming to increase sitting balance, functional independence, and trunk functions in children with SB.Abbreviations: SB: Spina Bifida; LLA: Lumbar Lordosis Angle; MMS: Meningomyelocele; WeeFIM: Functional Independence Measure for Children; TIS: Trunk Impairment Scale; PRT: Pediatric Functional Reach Test.

目的:探讨脊柱裂(SB)患儿腰椎前凸角(LLA)与躯干功能、坐位平衡、功能独立性及病变程度的关系。方法:选取30例SB患儿。LLA用柔性尺测量。分别采用儿童功能伸展测试(PRT)、躯干损伤量表(TIS)、儿童功能独立性量表(WeeFIM)和国际骨髓发育不良研究组标准评估坐位平衡、躯干功能、功能独立性和运动损伤水平。相关性采用Spearman相关检验。结果:LLA与PRT、TIS、WeeFIM结果有显著相关性。此外,LLA与病变程度之间也存在显著相关性(p)。结论:在康复治疗中,应支持LLA在正常范围内的发展,以提高sbb患儿的坐位平衡、功能独立性和躯干功能。LLA:腰椎前凸角;MMS:脑脊膜脊髓膨出;WeeFIM:儿童功能独立性量表;TIS:主干损伤量表;PRT:儿童功能伸展测试。
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引用次数: 0
Longitudinal Changes in the Sensorimotor Pathways of Very Preterm Infants During the First Year of Life With and Without Intervention: A Pilot Study. 有和没有干预的极早产儿第一年感觉运动通路的纵向变化:一项试点研究。
IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-10-01 Epub Date: 2021-06-23 DOI: 10.1080/17518423.2021.1903602
Sonia Khurana, Megan E Evans, Claire E Kelly, Deanne K Thompson, Jennifer C Burnsed, Amy D Harper, Karen D Hendricks-Muñoz, Mary S Shall, Richard D Stevenson, Ketaki Inamdar, Gregory Vorona, Stacey C Dusing

Objective: Evaluate longitudinal changes in brain microstructure and volumes in very preterm infants during the first year of life with and without intervention.Design: Descriptive pilot study.Methods: Five preterm infants in a three-arm clinical trial, one SPEEDI Early, two SPEEDI Late, and two usual care. Brain structural and diffusion MRI's were acquired within 72 hours after neonatal intensive care unit discharge (n = 5), three months post-baseline (n = 5), and six months post-baseline (n = 3). Fractional anisotropy (FA), Mean diffusivity (MD), and volume metrics were computed for five brain regions.Results: More than 60% of eligible participants completed 100% of the scheduled MRIs. FA and volume increased from baseline to six months across all brain regions. Rate of white matter volume change from baseline to six months was highest in SPEEDI Early.Conclusions: Non-sedated longitudinal MRI is feasible in very preterm infants and appears to demonstrate longitudinal changes in brain structure and connectivity.

目的:评价有干预和无干预情况下极早产儿第一年脑结构和体积的纵向变化。设计:描述性先导研究。方法:采用三组临床试验,5例早产儿,1例SPEEDI早期,2例SPEEDI晚期,2例常规护理。在新生儿重症监护病房出院后72小时(n = 5)、基线后3个月(n = 5)和基线后6个月(n = 3)内获得脑结构和弥散性MRI。计算5个脑区域的分数各向异性(FA)、平均弥散性(MD)和体积指标。结果:超过60%的符合条件的参与者完成了100%的预定核磁共振成像。从基线到6个月,所有大脑区域的FA和体积都有所增加。从基线到6个月的白质体积变化率在SPEEDI早期最高。结论:非镇静纵向MRI在非常早产儿中是可行的,并且似乎显示了大脑结构和连接的纵向变化。
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引用次数: 1
Improvement of Planning Abilities in Adults with Prader-Willi Syndrome: A Randomized Controlled Trial. 普瑞德-威利综合征成人计划能力的改善:一项随机对照试验。
IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-10-01 Epub Date: 2021-06-29 DOI: 10.1080/17518423.2021.1915405
Séverine Estival, Virginie Laurier, Fabien Mourre, Virginie Postal

Prader-Willi Syndrome (PWS) is a neurodevelopmental genetic disorder with executive deficits. Planning is one of the impaired executive functions implied in the regulation of behavior and everyday actions. We aimed to explore the feasibility and the effectiveness of a metacognitive strategy training designed to improve planning in adults with PWS using a double-blind between-group (training versus usual care) randomized controlled trial, with computerized tests and paper-pencil ecological outcome measures targeting planning, other executive functions, and achievement of personalized goal. Results showed better performances in several executive tasks and in achievement of personalized goals after both interventions, but better improvement for the experimental group (n = 27) compared to control (n = 26) only on the task assessing planning abilities. Interviews with occupational therapists demonstrated the feasibility of this training with this population. Despite a small number of sessions, the metacognitive strategy training showed encouraging results on planning abilities of patients.

普瑞德-威利综合征(PWS)是一种神经发育性遗传疾病,伴有执行力缺陷。计划是行为和日常行动的调节中隐含的执行功能受损之一。我们旨在通过双盲组间(训练与常规护理)随机对照试验,探讨旨在改善PWS成人计划的元认知策略训练的可行性和有效性,采用针对计划、其他执行功能和个性化目标实现的计算机测试和纸笔生态结果测量。结果显示,两种干预后,实验组(n = 27)在几个执行任务和实现个性化目标方面的表现更好,但仅在评估计划能力的任务上,实验组(n = 26)比对照组(n = 26)有更好的改善。与职业治疗师的访谈证明了这种培训对这一人群的可行性。元认知策略训练虽然疗程较少,但对患者计划能力的提高效果令人鼓舞。
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引用次数: 1
Characteristics Associated with the Use of an Inpatient Rehabilitation or Skilled Nursing Facility after Acute Care in Children with Severe Traumatic Brain Injury. 严重创伤性脑损伤儿童急性护理后住院康复或熟练护理设施使用的相关特征
IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-10-01 Epub Date: 2021-04-19 DOI: 10.1080/17518423.2021.1908441
Shiyao Gao, Anthony Fabio, Bedda L Rosario, M Kathleen Kelly, Sue R Beers, Michael J Bell, Stephen R Wisniewski

To characterize inpatient rehabilitation services for children with severe traumatic brain injury (TBI), we included 254 children, whose parents/guardians reported receipt of rehabilitation within a 12-month follow-up period, from a multinational observational study. Children discharged to an inpatient rehabilitation or skilled nursing facility after acute care were classified into the "inpatient rehabilitation" group, and children discharged home after acute care were classified into the "non-inpatient rehabilitation" group. Multivariable regression analyses determined the associations of sociodemographic and clinical characteristics with rehabilitation groups. Children receiving inpatient rehabilitation had a shorter length of acute hospitalization. Children from the UK were less likely to receive inpatient rehabilitation compared to children from the US. Future studies are warranted to extend current findings by identifying the reasons behind differential access to inpatient rehabilitation among children with severe TBI.

为了描述严重创伤性脑损伤(TBI)儿童的住院康复服务,我们纳入了254名儿童,他们的父母/监护人报告在12个月的随访期内接受了康复治疗,来自一项多国观察性研究。急性护理后出院至住院康复或专业护理机构的儿童被归类为“住院康复”组,急性护理后出院的儿童被归类为“非住院康复”组。多变量回归分析确定了社会人口学和临床特征与康复组的关系。接受住院康复治疗的患儿急性住院时间较短。与美国儿童相比,英国儿童接受住院康复治疗的可能性较小。未来的研究有理由通过确定严重创伤性脑损伤儿童住院康复机会差异背后的原因来扩展当前的研究结果。
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引用次数: 1
A Pilot Study Delivering Physiotherapy Support for Rett Syndrome Using a Telehealth Framework Suitable for COVID-19 Lockdown. 使用适合COVID-19封锁的远程医疗框架为Rett综合征提供物理治疗支持的试点研究
IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-08-01 Epub Date: 2021-04-15 DOI: 10.1080/17518423.2021.1914762
Meir Lotan, Jenny Downs, Cochavit Elefant

Background: Rett syndrome (RTT) is a genetically caused neurodevelopmental disorder associated with severe disability. We assessed the feasibility of a telehealth program supporting gross motor skills in RTT.Methods: Five girls with RTT were assessed and a home-based exercise program developed in response to functional goals. Families then participated in monthly Skype sessions for 6 months, guided by a physiotherapist to monitor progress and adjust the program as necessary. Goal Attainment Scaling was used to evaluate progress and a parental satisfaction questionnaire was administered.Results: Four goals were established for each participant and progress was greater than would be expected in 16 of 20 goals. Parents evaluated the program as feasible and useful for their daughters.Discussion: A telehealth model of home-based intervention supported individuals with RTT to achieve gross motor skills and was found to be feasible. This model is important at present times during COVID-19 outbreak and lockdown.

背景:Rett综合征(RTT)是一种与严重残疾相关的遗传性神经发育障碍。我们评估了远程医疗计划在RTT中支持大肌肉运动技能的可行性。方法:对5名患有RTT的女孩进行评估,并根据功能目标制定了基于家庭的锻炼计划。然后,家庭参加了为期6个月的每月Skype会议,由物理治疗师指导,以监测进展并根据需要调整计划。目标实现量表用于评估进展,并进行家长满意度问卷调查。结果:为每位参与者建立了4个目标,20个目标中有16个目标的进展大于预期。家长们评价这个项目对他们的女儿是可行和有用的。讨论:一种基于家庭干预的远程医疗模式支持RTT患者实现大肌肉运动技能,并被发现是可行的。在当前COVID-19爆发和封锁期间,这种模式非常重要。
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引用次数: 14
"Have We Done Enough?" A Cross-condition Exploration of the Experiences of Parents Caring for A Child with an Appearance-affecting Condition or Injury. “我们做得够不够?”父母照顾患有外貌影响疾病或受伤儿童的经验的跨条件探索。
IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-08-01 Epub Date: 2021-04-14 DOI: 10.1080/17518423.2021.1901150
Maia Thornton, Diana Harcourt, Toity Deave, James Kiff, Heidi Williamson

Children and young people (CYP) with appearance-affecting conditions/injuries report common pervasive psychosocial difficulties, regardless of cause, nature or extent of their visible differences. Parents or carers can also experience psychosocial difficulties and challenges specific to having CYP with a visible difference. Current literature is confined to exploring condition-specific concerns of parents, typically in more prevalent appearance-affecting conditions/injuries, whilst the experiences of parents of CYP with other visible differences are unknown. Thirty-one interviews (parents n = 20, health and support professionals n = 11) and 4 parent focus groups (n = 25) were conducted. Three overarching themes were constructed: "Appearance does(n't) matter" describes the impact of having a child with a socially undesirable appearance; "Being 'battle' ready" reflects parents' desire to arm their child with resources to manage challenges, whilst "Walking the tightrope" reflects parents' lack of clarity about how best to approach this. Findings highlight shared and common cross-condition psychosocial difficulties among parents and carers.

患有外貌影响疾病/损伤的儿童和青少年(CYP)报告普遍存在的社会心理困难,无论其明显差异的原因、性质或程度如何。父母或照顾者也可能遇到心理社会困难和挑战,具体到CYP有明显的不同。目前的文献局限于探索家长对特定条件的关注,通常是在更普遍的影响外观的条件/损伤中,而CYP父母的经历与其他可见的差异是未知的。共进行了31次访谈(20名家长,11名健康和支持专业人员)和4个家长焦点小组(25名家长)。研究构建了三个主要主题:“外表不重要”描述了拥有一个不受社会欢迎的外表的孩子的影响;“做好战斗准备”反映了父母希望用资源武装孩子来应对挑战,而“走钢丝”反映了父母不清楚如何最好地应对挑战。研究结果强调了父母和照顾者之间共有和共同的交叉心理社会困难。
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引用次数: 2
Understanding the Five-Year Outcomes of Abusive Head Trauma in Children: A Retrospective Cohort Study. 了解儿童虐待性头部创伤的五年预后:一项回顾性队列研究。
IF 1.3 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2021-08-01 Epub Date: 2021-01-22 DOI: 10.1080/17518423.2020.1869340
Jaimi Manfield, Karen Oakley, Julie-Anne Macey, Mary-Clare Waugh

Understanding the long-term medical and developmental outcomes for children who survive abusive head trauma (AHT) is important to ensure necessary supports and services are available. This study examined the retrospective global and specific medical and developmental outcomes of 55 children with AHT who were treated at The Children's Hospital at Westmead. Global outcomes were assessed using the Kings Outcome Scale of Childhood Head Injury (KOSCHI). Five years post-injury, one child had died and two had made a complete recovery. Forty-five children (81.8%) had a moderate or severe disability, an increase from 64.5% at acute discharge. At follow-up, the main impairments were behavioral problems (53%), vision impairment (44%), fine motor difficulties (26%), gross motor problems (26%), communication problems (24%) and 16% had seizures. A Spearman's Rank correlation revealed that only 41% of variance in KOSCHI scores five years post-injury could be accounted for KOSCHI scores at the time of acute discharge (rs(55) = 0.638, p < .001), and many children's presentation was worse at follow-up. Therefore, all children presenting with AHT need long term follow up regardless of early indications of good recovery.

了解虐待性头部创伤(AHT)存活儿童的长期医疗和发展结果对于确保提供必要的支持和服务非常重要。本研究回顾了55名在Westmead儿童医院接受治疗的AHT患儿的总体和具体医疗和发育结果。使用Kings儿童头部损伤结果量表(KOSCHI)评估全球结果。受伤五年后,一个孩子死亡,两个完全康复。45名儿童(81.8%)有中度或重度残疾,高于急性出院时的64.5%。在随访中,主要的障碍是行为问题(53%),视力障碍(44%),精细运动困难(26%),大运动问题(26%),交流问题(24%)和16%的癫痫发作。Spearman's Rank相关性显示,损伤后5年KOSCHI评分的方差只有41%可用于急性出院时的KOSCHI评分(rs(55) = 0.638, p
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引用次数: 8
期刊
Developmental Neurorehabilitation
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