functional abilities

功能能力
  • 文章类型: Journal Article
    背景:患有唐氏综合症(DS)的人患阿尔茨海默病(AD)的终生风险为75%至90%。AD病理学在DS患者的临床AD痴呆发作之前十年或更长时间开始。目前尚不清楚AD病理的血浆生物标志物是否与DS的早期认知和功能障碍相关。以及这些生物标志物是否可用于跟踪DS中AD的早期阶段或告知临床AD治疗试验的纳入标准。
    方法:这项大型横断面队列研究调查了淀粉样β(Aβ)42/40,总tau,和神经丝轻链(NfL)和认知(情景记忆,视觉-运动整合,和视觉空间能力)和功能(适应性行为)受损的260名DS无痴呆的成年人(年龄25-81岁)。
    结果:在一般线性模型中,较低的血浆Aβ42/40与较低的视觉空间能力有关,较高的总tau与较低的情景记忆有关,较高的NfL与较低的视觉空间能力和较低的情景记忆有关。
    结论:血浆生物标志物可用于追踪与DS成人早期认知衰退相关的AD病理,虽然协会是温和的。
    血浆阿尔茨海默病(AD)生物标志物与唐氏综合征痴呆前的认知相关。较低的血浆淀粉样β42/40与较低的视觉空间能力有关。较高的血浆总tau和神经丝轻链与较低的认知表现相关。血浆生物标志物显示出跟踪AD症状学早期阶段的潜力。
    BACKGROUND: People with Down syndrome (DS) have a 75% to 90% lifetime risk of Alzheimer\'s disease (AD). AD pathology begins a decade or more prior to onset of clinical AD dementia in people with DS. It is not clear if plasma biomarkers of AD pathology are correlated with early cognitive and functional impairments in DS, and if these biomarkers could be used to track the early stages of AD in DS or to inform inclusion criteria for clinical AD treatment trials.
    METHODS: This large cross-sectional cohort study investigated the associations between plasma biomarkers of amyloid beta (Aβ)42/40, total tau, and neurofilament light chain (NfL) and cognitive (episodic memory, visual-motor integration, and visuospatial abilities) and functional (adaptive behavior) impairments in 260 adults with DS without dementia (aged 25-81 years).
    RESULTS: In general linear models lower plasma Aβ42/40 was related to lower visuospatial ability, higher total tau was related to lower episodic memory, and higher NfL was related to lower visuospatial ability and lower episodic memory.
    CONCLUSIONS: Plasma biomarkers may have utility in tracking AD pathology associated with early stages of cognitive decline in adults with DS, although associations were modest.
    UNASSIGNED: Plasma Alzheimer\'s disease (AD) biomarkers correlate with cognition prior to dementia in Down syndrome.Lower plasma amyloid beta 42/40 was related to lower visuospatial abilities.Higher plasma total tau and neurofilament light chain were associated with lower cognitive performance.Plasma biomarkers show potential for tracking early stages of AD symptomology.
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  • 文章类型: Journal Article
    这项研究旨在评估父母对唐氏综合症(DS)患者的发病率和某些功能能力的看法,以及他们根据摩洛哥的年龄和性别的变异性。
    在2014年5月至2017年11月之间进行了回顾性和分析调查,并针对279名DS患者的父母。包括161名1至40岁的男童(57.7%)。样本被细分为树木年龄组,10岁以下的儿童,10-18岁的青少年和≥18岁的成年人。关于父母身份的信息,DS患者的年龄和性别,他们在调查前两年的发病率,收集了一些功能能力。使用统计程序SPSS统计软件forWindows(版本20.0)输入和分析数据。卡方(χ2)检验用于检验统计学意义。当p值<0.05时,认为差异显著。多变量分析用于确定与儿童年龄和性别独立相关的发病原因。以95%置信区间(95%Cl)的比率(OR)测量关联。
    DS研究样本中记录的发病率的最常见因素,包括呼吸道感染,视觉障碍,口腔疾病,和心脏问题(75.4%,72.1%,59.3%,和44.9%,分别)。听力缺陷,心脏问题,呼吸道感染,和口腔疾病在三个年龄组之间显示出统计学上的显着差异。根据参与者父母的看法,其中一半(50%)能够在30个月时走路,72个月的谈话,坐在16个月,16个月时爬行,48个月时独自吃饭。
    不同年龄的DS患者会出现一系列潜在可治疗的疾病,需要多学科的医学监测。他们还需要早期的辅助医疗护理来提高他们的功能。
    UNASSIGNED: This study aimed to assess parental perceptions of morbidity and certain functional abilities in people with Down syndrome (DS) and their variability according to age and sex in Morocco.
    UNASSIGNED: A retrospective and analytical survey was conducted between May 2014 and November 2017, and addressed to the parents of 279 individuals with DS, including 161 boys (57.7%) aged 1-40 years. The sample was subdivised to tree age groups, children under 10 years old, adolescents aged 10-18 years and adults aged ≥ 18 years. Information about the identity of parents, age and sex of people with DS, their morbidity during the two years preceding the survey, and some functional abilities was collected. Data were entered and analyzed using the statistical program SPSS statistics software for Windows (version 20.0). Chi-square (χ2) test was used for testing statistical significance. Differences were considered significant when the p-value < 0.05. The multivariate analysis were used to identify the causes of morbidies independently associated with age and sex of child. Associations were measured in Odds ratio (OR) with 95% confidence intervals (95% Cl).
    UNASSIGNED: The most common factors of morbidity registered in the study sample with DS, included respiratory infections, visual disturbances, oral pathologies, and cardiac problems (75.4%, 72.1%, 59.3%, and 44.9%, respectively). The hearing deficit, cardiac problems, respiratory infections, and oral pathologies showed statistically significant differences among the three age groups. According to the participants parents\' perceptions, half of them (50%) were able to walk at 30 months, talk at 72 months, sit at 16 months, crawl at 16 months and eat alone at 48 months old.
    UNASSIGNED: People with DS at different ages present a set of potentially treatable diseases that require multidisciplinary medical monitoring. They also need early paramedical care to improve their functional abilities.
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  • 文章类型: Journal Article
    背景:肌肉减少症是一种与年龄相关的肌肉质量和力量的进行性丧失,可以通过阻力训练进行调节。本研究旨在探讨TRX悬吊训练(TST)对老年男性肌少症患者血清神经肌肉、生长因子及功能指标的影响。一种与年龄有关的疾病,其特征是进行性肌肉质量和力量丧失。
    方法:将19例老年男性(年龄=74.87±4.58岁)随机分为两组,TST组(n=10)和对照组(n=9)。调节肌肉标志物的血清浓度,人体测量和身体成分指数,和功能测试在基线和8周后进行评估。训练方案包括八周的TRX练习,每周三次。
    结果:经过8周的训练,生长因子如卵泡抑素(FST)(P=0.001),22kDaC末端聚集蛋白片段(CAF)(P=0.031),与对照组相比,训练组中生长分化因子15(GDF15)(P=0.049)显着增加,肌肉生长抑制素(MSTN)(P=0.002)显着降低。然而,ASMM/m2无显著性差异(P=0.527),SMM/m2(P=0.621),组内或组间的体脂质量(P=0.433)。此外,TRX悬吊训练对功能测试和改善步态速度有显著影响(P=0.037),椅架(P=0.016),和TUG(P=0.016)以及握力(P=0.035)。
    结论:我们的研究结果强调了TRX悬吊训练在提高老年肌肉减少症患者血清肌肉生长因子水平和功能能力方面的有效性。因此,考虑到正在进行的COVID-19大流行,该方案可以证明对这一人口群体有益.
    背景:伊朗临床试验注册标识符:IRCT20230727058944N1,前瞻性注册20-09-2023,https://en。irct.ir/trial/71635。
    BACKGROUND: Sarcopenia is an age-related progressive loss of muscle mass and strength that can be modulated by resistance training. This study aimed to investigate the effects of TRX Suspension Training (TST) on serum levels of neuromuscular and growth factors and functional indices in elderly men with sarcopenia, an age-related condition characterized by progressive muscle mass and strength loss.
    METHODS: Nineteen sarcopenic elderly men (age = 74.87 ± 4.58 years) were randomly assigned into two groups, the TST group (n = 10) and the control group (n = 9). Serum concentrations of regulatory muscle markers, anthropometric and body composition indices, and functional tests were evaluated at baseline and after 8 weeks. The training protocol consisted of eight weeks of TRX exercises, with three weekly sessions.
    RESULTS: After 8 weeks of training, growth factors such as Follistatin (FST) (P = 0.001), 22 kDa C-terminal agrin fragment (CAF) (P = 0.031), and growth differentiation factor 15 (GDF15) (P = 0.049) increased significantly in the training group in comparison to the control group and Myostatin (MSTN) (P = 0.002) had a significant decrease. However, there was no significant difference in ASMM/m2 (P = 0.527), SMM/m2 (P = 0.621), or Body fat mass (P = 0.433) within or between groups. In addition, the TRX Suspension Training had a significant effect on the functional tests and improved gait speed (P = 0.037), chair stand (P = 0.016), and TUG (P = 0.016) as well as Handgrip strength (P = 0.035).
    CONCLUSIONS: Our findings highlight the efficacy of TRX Suspension Training in enhancing the serum levels of muscle growth factors and functional capacities among elderly individuals with sarcopenia. Therefore, considering the ongoing COVID-19 pandemic, this protocol can prove beneficial for this demographic group.
    BACKGROUND: Iranian Registry of Clinical Trials identifier: IRCT20230727058944N1, prospectively registered 20-09-2023, https://en.irct.ir/trial/71635.
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  • 文章类型: Journal Article
    目的:本研究的目的是确定低水平激光治疗(LLL)和康复联合治疗对近期全膝关节置换术(TKR)后患者的有效性。
    方法:在曼苏拉大学医院骨科进行了一项双盲随机对照研究。从总共58名符合纳入标准的患者中选择了44名患者,并将其随机分为相同大小的对照组和实验组。最终,40名患者完成了研究(每组20名)。两组都参加了强化功能康复计划,实验组还在切口线处接受了膝关节周围的LLL治疗,内侧和外侧关节内间隙,髌骨上方和下方,并在低注量(6J/cm2,650nm连续波)和每点60s下在the窝窝,在12个疗程中每次总剂量为48J,持续六周。膝关节运动范围(ROM)用数字测角仪测量,使用阿拉伯语版本的西安大略省和麦克马斯特大学骨关节炎(WOMAC)指数评估功能能力。
    结果:各组治疗前后的所有变量均存在显着差异。治疗前,两组间任何测量变量均无显著差异(P>0.05)。治疗后,两组间膝关节屈曲ROM和WOMAC指数差异有统计学意义(P<0.05),膝关节伸展ROM差异无统计学意义(P>0.05)。
    结论:在TKR后的康复计划中增加低水平激光治疗可显著提高膝关节屈曲活动度和WOMAC指数。
    OBJECTIVE: The aim of this study was to determine the effectiveness of combined low-level laser therapy (LLL) and rehabilitation in patients following recent total knee replacement (TKR).
    METHODS: A double-blind randomized controlled study was conducted at the Orthopedic Department of Mansoura University Hospital. Forty-four patients were chosen from a total of 58 patients who met the inclusion criteria and were assigned randomly into control and experimental groups of equal size. Ultimately, 40 patients completed the study (20 from each group). Both groups participated in an intensive functional rehabilitation program, and the experimental group also received LLL therapy around the knee at the incisional line, the medial and lateral intra-articular space, above and below the patella, and at the popliteal fossa at low fluence (6 J/cm2, 650 nm continuous wave) and 60 s per point with a total dose of 48 J per session over 12 treatment sessions for six weeks. Knee range of motion (ROM) was measured with a digital goniometer, and functional abilities were assessed with the Arabic version of the Western Ontario and McMaster Universities Osteoarthritis (WOMAC) index.
    RESULTS: There were significant differences in all variables pre- and post-treatment within each group. Before treatment, there was no significant difference in any of the measured variables between the groups (P>0.05). After treatment, there were significant differences in knee flexion ROM and WOMAC index (P<0.05) but no significant difference in knee extension ROM between the groups (P>0.05).
    CONCLUSIONS: The addition of low-level laser therapy to a rehabilitation program post-TKR resulted in substantial enhancements in knee flexion range of motion and the WOMAC index.
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  • 文章类型: Journal Article
    建设对老年人友好的社区是促进积极老龄化和提高老年人生活满意度的实践和政策的优先事项。然而,关于年龄友好型邻里环境和功能能力对中国城市老年人生活满意度的交互影响的纵向证据很少。本研究首次尝试通过基线邻里环境的年龄友好性(在WHO年龄友好型城市框架内测量)对功能能力和生活满意度轨迹的累积影响以及功能变化对生活满意度的长期影响来检查人与环境匹配对生活满意度的影响。从中国健康与退休纵向研究(CHARLS)和潜在增长曲线模型的四波纵向数据中得出。结果表明,运输的年龄友好性与功能能力呈正相关,住房是影响基线生活满意度的主要因素。随着时间的推移,更好地维持功能能力可以提高生活满意度。对于居住在最近建成的社区的老年人来说,社团和社会参与设施等社会环境因素在功能能力中更为重要,沟通和信息在生活满意度中更为重要。对于那些生活在2000年之前建成的社区的人来说,交通等物理环境因素对功能能力至关重要,住房在生活满意度方面更为重要;从长远来看,与健康相关的设施和服务对维持功能能力具有累积作用。我们的研究结果为政策制定者提供了如何有效分配公共资源以提高中国城市环境中老年人的生活满意度。
    The construction of age-friendly neighbourhoods is a priority for practice and policy to promote active ageing and increase life satisfaction for older adults. However, there has been a paucity of longitudinal evidence on the interaction effects of age-friendly neighbourhood environment and functional abilities on life satisfaction among older adults in urban China. This study makes the first attempt to examine the effect of person-environment fit on life satisfaction by the accumulative effects of age-friendliness of the baseline neighbourhood environment (measured within the WHO Age-Friendly City framework) on functional abilities and life satisfaction trajectories and the long-term effects of functioning changes on life satisfaction, drawing from four waves of longitudinal data from the China Health and Retirement Longitudinal Study (CHARLS) and latent growth curve modelling. Results indicated that the age-friendliness of transportation was positively associated with functional abilities, and housing was the primary factor that shaped life satisfaction at the baseline. Better maintenance of functional abilities could promote life satisfaction over time. For older adults living in recently built neighbourhoods, social environment factors such as associations and facilities for social participation were more important in functional abilities, and communication and information were more important in life satisfaction. For those living in neighbourhoods built before 2000, physical environment factors such as transportation were essential in functional abilities, and housing was more essential in life satisfaction; health-related facilities and services at baseline exerted a cumulative effect on maintaining functional abilities in the long run. Our findings inform policymakers about how to effectively allocate public resources to enhance older adults\' life satisfaction in the Chinese urban context.
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  • 文章类型: Journal Article
    必须使用功能调查来调查手术后的患者,例如美国肩肘外科医生肩关节(ASES)和Constant-Murley肩关节(CMS)评分,以及临床试验,例如内部旋转和移位(IRO/Shift)和Jube测试。在这项研究中,最初的87例患者中有51例接受了关节镜上肌修复术(22例单排,16双排,13清创)。测试发生在手术前,术后3个月和6个月。两项调查显示,随着时间的推移,所有87名患者都有显著改善。但组间(病变/无病变)(p>0.815)或时间×组(p>0.895)无差异。IRO/Shift测试表明,区分两组的能力更强(阳性与负面)关于ASES和CMS分数随着时间的推移,但乔布测试没有(p>0.100)。与ASES和IRO/Shift测试相比,修复后CMS评分和Jube测试的改善较低。大多数患者在手术后6个月恢复到足够的功能水平。与单排和清创组相比,双排修复患者恢复日常生活活动和阴性临床试验所需的时间更长。总之,功能调查和临床试验均显示手术后有所改善.
    It is essential to investigate patients post-surgery using functional surveys like the American Shoulder and Elbow Surgeons Shoulder (ASES) and the Constant-Murley shoulder (CMS) scores, as well as clinical tests, such as the Internal Rotation and Shift (IRO/Shift) and Jobe tests. In this study, 51 out of an initial 87 patients underwent an arthroscopic supraspinatus repair (22 single-row, 16 double-row, 13 debridement). Testing occurred pre-surgery, and 3 and 6 months post-surgery. Both surveys showed significant improvements over time among all 87 patients, but there were no differences between groups (lesion/no lesion) (p > 0.815) or time × group (p > 0.895). The IRO/Shift test showed a stronger ability to distinguish between both groups (positive vs. negative) with respect to the ASES and CMS scores over time, but the Jobe test did not (p > 0.100). Improvements in the CMS scores and the Jobe test were lower following repair compared to the ASES and IRO/Shift test. Most patients returned to adequate levels of functional abilities at 6 months post-surgery. The time required to return to activities of daily living and negative clinical tests was longer for the double-row repair patients compared to the single-row and debridement groups. In conclusion, both the functional surveys and the clinical tests demonstrated improvements following surgery.
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  • 文章类型: Journal Article
    对病假客户进行基于证据的工作残疾预后评估(WDPE)对于医生来说是一项艰巨的任务。目的是开发一种工作方法,以支持医生进行基于证据的WDPE并提高WDPE质量。
    干预映射(IM)补充了行为改变轮(BCW)的元素,以指导开发工作方法的项目计划。这种方法允许与其他框架的组合,例如,行为改变理论。在各种生态层面上分析了WDPE质量挑战,例如,个人(即,医生),人际关系(即,客户)和组织层面,最终形成问题的多层次逻辑模型。导致这个问题的决定因素,例如,缺乏医生对执行循证WDPE的知识,已确定。制定了性能目标,以促进WDPE质量的期望变化。从绩效目标和决定因素(例如,知识),变化的目标是衍生出来的。为了实现这些变化目标,适当的干预功能(例如,教育)和政策类别(例如,服务提供)被确定,允许制定干预措施。行为改变技术(例如,对行为结果的反馈)被选择来服务于干预功能,以实现所需的变化。这导致了干预计划的概念化。
    介绍了干预措施“可预测”。它由基于证据的WDPE的逐步工作方法(SWM)组成。SWM提供了重要方面的概述(例如,医疗状况,客户\'对重返工作岗位的信心)在个人客户\'WDPE中考虑。SWM帮助医生识别关键的功能限制,发现并评估基于证据的信息,权衡所有相关的预后方面,它支持医生以基于证据的WDPE得出结论,为个人客户量身定制。干预“可预测”是设计的,其中还包括一个教育计划和一个支持性软件工具,以实现SWM。
    IM与BCW元素的结合指导了基于证据的WDPE的SWM的开发。SWM将通过数字工具支持的医生教育计划提供。SWM,教育计划和数字工具已准备好在实践中实施和评估干预措施。\"
    Performing evidence-based work disability prognosis evaluation (WDPE) of clients on sick leave is a difficult task for physicians. The aim was to develop a working method to support physicians in performing evidence-based WDPE and to improve WDPE quality.
    Intervention Mapping (IM) supplemented with elements of the Behavior Change Wheel (BCW) guided project planning for developing the working method. This approach allowed combination with other frameworks and, e.g., behavior change theories. WDPE quality challenges were analyzed on various ecological levels, e.g., the individual (i.e., the physician), interpersonal (i.e., the client) and organizational level, culminating into a multilevel logic model of the problem. Determinants that contributed to this problem, e.g., lack of physicians\' knowledge on performing evidence-based WDPE, were identified. Performance objectives were formulated that could contribute to a desired change in WDPE quality. From the performance objectives and determinants (e.g., knowledge), change objectives were derived. In order to achieve these change objectives, suitable intervention functions (e.g., education) and policy categories (e.g., service provision) were identified, allowing the formulation of intervention components. Behavior change techniques (e.g., feedback on outcomes of a behavior) were selected to serve the intervention functions to deliver the desired change. This led to the conceptualization of an intervention plan.
    The intervention \"Prognosable\" is presented. It consists of a stepwise working method (SWM) for evidence-based WDPE. The SWM offers an overview of important aspects (e.g., medical condition, clients\' confidence in return-to-work) to consider in individual clients\' WDPE. The SWM helps physicians to identify crucial functional limitations, find and appraise evidence-based information, weigh all relevant prognostic aspects and it supports physicians to conclude with an evidence-based WDPE, tailored to the individual client. The intervention \"Prognosable\" was designed, which also includes an educational program and a supportive software tool to enable implementation of the SWM.
    IM combined with BCW elements guided the development of a SWM for evidence-based WDPE. The SWM will be delivered through an educational program for physicians supported by a digital tool. The SWM, educational program and digital tool are ready to be implemented and evaluated in practice as the intervention \"Prognosable.\"
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  • 文章类型: Observational Study
    背景和目的:分娩后母亲的功能状态对于进行日常生活活动和照顾新生儿至关重要。重要的是评估分娩后的功能能力,以提高产后护理质量。这项研究的目的是确定问卷的心理测量特性并评估分娩后的功能能力。材料和方法:本研究是观察性的。产后功能评估问卷包括十一项。301名妇女分娩后,阴道分娩后的234和剖腹产后的67参与了该研究。在分娩后的第一天和第三天进行疼痛强度和功能能力的评估。进行因子和Cronbach的α分析以确定因子结构和内部一致性。结果:分析揭示了两个因素,在因子1上加载七个项目,在因子2上加载四个项目。第一天构建体I(流动性)的Cronbachα为0.927,第三天为0.913;对于因子II(自我护理),第一天为0.846,第三天为0.894。疼痛强度和功能能力的所有组间差异均具有高度统计学意义(p<0.001)。产后第一天和第三天的差异对于所有变量和所有亚组都具有统计学意义(p<0.001)。结论:产后功能评估问卷具有良好的心理测量特性,是临床实践中使用的有价值的工具。
    Background and Objectives: Functional status of the mother after delivery is crucial for performing activities of daily living and caring for the newborn. It is important to assess functional abilities after childbirth in order to improve the quality of postpartum care. The aim of this study is to determine the psychometric properties of the questionnaire and assess the functional abilities after childbirth. Materials and Methods: This study is observational. Postpartum Functional Assessment Questionnaire includes eleven items. 301 women after childbirth, 234 after vaginal birth and 67 after caesarean section participated in the study. An assessment of pain intensity and functional abilities was performed on the first and third day after childbirth. The Factor and Cronbach\'s alpha analyses were performed to determine the factor structure and internal consistency. Results: The analysis reveals two factors, with seven items loading on factor 1 and four on factor 2. Cronbach\'s alpha for construct I (Mobility) at the first day was 0.927 and at the third day was 0.913; and for Factor II (Self-care) at the first day was 0.846 and at the third day was 0.894. All between-group differences in pain intensity and functional abilities were highly statistically significant (p < 0.001). Differences between the first and third postpartum day were statistically significant for all variables and all subgroups (p < 0.001). Conclusions: Postpartum Functional Assessment Questionnaire has good psychometric properties and is a valuable tool for use in clinical practice.
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  • 文章类型: Journal Article
    Rett综合征(RTT)是一种复杂的神经发育X连锁疾病,与严重的功能障碍和多种合并症有关。临床表现差异很大,由于其独特的特点,临床严重程度的几种评估工具,行为,和功能的运动能力已经提出了专门为它。本文旨在介绍最新的评估工具,这些工具专门针对作者在临床和研究实践中经常使用的RTT患者,并为读者提供有关其使用的基本考虑和建议。由于Rett综合征的罕见,我们发现提出这些量表对于改善和专业化他们的临床工作很重要。本文将回顾以下评估工具:(a)Rett评估评定量表;(b)Rett综合征粗大运动量表;(c)Rett综合征功能量表;(d)功能性流动性量表-Rett综合征;(e)针对Rett综合征进行的两分钟步行测验;(f)Rett综合征手功能量表;(g)Stepwatch活动量表;(h)Retnard综合征的活动量表)作者建议服务提供商考虑对RTT进行验证的评估工具进行评估和监测,以指导其临床建议和管理。在这篇文章中,作者提出了使用这些评估工具辅助解释分数时应考虑的因素.
    Rett syndrome (RTT) is a complex neurodevelopmental X-linked disorder associated with severe functional impairments and multiple comorbidities. There is wide variation in the clinical presentation, and because of its unique characteristics, several evaluation tools of clinical severity, behavior, and functional motor abilities have been proposed specifically for it. This opinion paper aims to present up-to date evaluation tools which have specifically been adapted for individuals with RTT often used by the authors in their clinical and research practice and to provide the reader with essential considerations and suggestions regarding their use. Due to the rarity of Rett syndrome, we found it important to present these scales in order to improve and professionalize their clinical work. The current article will review the following evaluation tools: (a) the Rett Assessment Rating Scale; (b) the Rett Syndrome Gross Motor Scale; (c) the Rett Syndrome Functional Scale; (d) the Functional Mobility Scale-Rett Syndrome; (e) the Two-Minute Walking Test modified for Rett syndrome; (f) the Rett Syndrome Hand Function Scale; (g) the StepWatch Activity Monitor; (h) the activPALTM; (i) the Modified Bouchard Activity Record; (j) the Rett Syndrome Behavioral Questionnaire; and (k) the Rett Syndrome Fear of Movement Scale. The authors recommend that service providers consider evaluation tools validated for RTT for evaluation and monitoring to guide their clinical recommendations and management. In this article, the authors suggest factors that should be considered when using these evaluation tools to assist in interpreting scores.
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  • 文章类型: Journal Article
    背景:上肢2.0(PUL)的表现被广泛用于评估DMD患者的上肢功能。该研究的目的是评估大量DMD患者的24个月PUL变化,并确定特定功能亚组中结构域变化是否更频繁。
    方法:在311名患者中进行了PUL,这些患者在24个月时至少进行了一对评估,共808次配对评估。根据行走能力将救护车患者细分:>350、250-350、≤250米。非卧床患者根据他们失去行走的时间进行细分:<1、1-2、2-5或>5年。
    结果:在12个月时,所有配对评估的平均PUL2.0变化为总分的-1.30(-1.51--1.05),-0.5(-0.66--0.39)对于肩域,肘部域为-0.6(-0.74--0.5),远端域为-0.1(-0.20--0.06)。24个月时,所有配对评估的平均PUL2.0变化为总分的-2.9(-3.29--2.60),-1.30(-1.47--1.09)对于肩域,肘部域为-1.30(-1.45--1.11),远端域为-0.4(-1.48--1.29)。12个月和24个月时的变化在总分和每个域的功能能力不同的亚组之间具有统计学意义(p<0.001)。
    结论:各个结构域的功能亚组之间存在不同的变化模式。过渡的时间,包括失去步行前后的一年,显示PUL总分负变化的峰值,不仅反映了肩部的丧失,还反映了肘关节活动的丧失。这些结果表明,在设计临床试验时应该考虑变化的模式。
    BACKGROUND: The performance of upper limb 2.0 (PUL) is widely used to assess upper limb function in DMD patients. The aim of the study was to assess 24 month PUL changes in a large cohort of DMD patients and to establish whether domains changes occur more frequently in specific functional subgroups.
    METHODS: The PUL was performed in 311 patients who had at least one pair of assessments at 24 months, for a total of 808 paired assessments. Ambulant patients were subdivided according to the ability to walk: >350, 250-350, ≤250 meters. Non ambulant patients were subdivided according to the time since they lost ambulation: <1, 1-2, 2-5 or >5 years.
    RESULTS: At 12 months, the mean PUL 2.0 change on all the paired assessments was -1.30 (-1.51--1.05) for the total score, -0.5 (-0.66--0.39) for the shoulder domain, -0.6 (-0.74--0.5) for the elbow domain and -0.1 (-0.20--0.06) for the distal domain.At 24 months, the mean PUL 2.0 change on all the paired assessments was -2.9 (-3.29--2.60) for the total score, -1.30 (-1.47--1.09) for the shoulder domain, -1.30 (-1.45--1.11) for the elbow domain and -0.4 (-1.48--1.29) for the distal domain.Changes at 12 and 24 months were statistically significant between subgroups with different functional abilities for the total score and each domain (p < 0.001).
    CONCLUSIONS: There were different patterns of changes among the functional subgroups in the individual domains. The time of transition, including the year before and after loss of ambulation, show the peak of negative changes in PUL total scores that reflect not only loss of shoulder but also of elbow activities. These results suggest that patterns of changes should be considered at the time of designing clinical trials.
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