中文版脑性瘫痪儿童生活质量问卷的信度

目的确定中文版脑瘫儿童生活质量问卷(CPQOL)的不同自评者间的信度。方法康复医疗机构中21例脑瘫儿童的两名家长分别进行自评,1家特殊教育学校18名脑瘫儿童及其家长分别采用CPQOL中文版进行自评。计算家长间、家长与儿童间的等级间相关系数(ICC),分析家长与儿童CPQOL各项分值间的差异。结果 CPQOL各分区家长间ICC=0.49~0.86,其中功能、获得服务分区信度极好,参与能力与躯体健康、疼痛与残障的影响分区信度中等。儿童与家长间的信度相对较低(ICC=0.29~0.73),其中功能、参与能力与躯体健康的信度良好,其余3个分区均较低,社会福祉和受容度分区的信度不理想。儿童自评分值均高于家长,其中参与能力与躯体健康分区分值有显著性差异(P0.05)。结论中文版CPQOL家长问卷信度尚可,尤其在功能和获得服务分区;家长和儿童自评的信度中等,社会福祉和受容度分区的信度较低。     

脑性瘫痪对患儿生存质量的影响研究

目的探讨脑性瘫痪对患儿生存质量的影响。方法采用儿童生存质量测定量表体系（the pediatric quality of life inventory measurement models,PedsQL）4.0作为儿童生存质量的测定工具,分别对脑性瘫痪患儿、一般疾病患儿及正常儿童进行生存质量测定,比较各组之间的差异性。结果脑性瘫痪患儿113例,男68例,女45例,平均年龄为（3.65±2.15）岁;一般疾病患儿52例,男30例,女22例,平均年龄为（3.77±1.83）岁;正常儿童314例,男177例,女137例,平均年龄为（4.46±1.13）岁。脑性瘫痪组患儿的生理功能得分为（27.80±22.61）分,情感功能得分为（55.88±22.02）分,社交功能得分为（37.17±23.44）分,PedsQL总分为（39.05±17.20）分;一般疾病组患儿的生理功能得分为（89.12±11.99）分,情感功能得分为（76.44±15.81）分,社交功能得分为（88.46±13.98）分,PedsQL总分为（83.12±10.54）分;正常对照组儿童的生理功能得分为（91.42±36.58）分,情感功能得分为（83.28±80.61）分,社交功能得分为（84.91±16.25）分,PedsQL总分为（86.57±24.83）分。脑性瘫痪组患儿在生理功能得分、社交功能得分及PedsQL总分方面均较一般疾病组和正常对照组儿童低,差异有统计学意义（P〈0.01）;脑性瘫痪组患儿的情感功能得分较正常儿童低,差异有统计学意义（P〈0.05）。脑性瘫痪组患儿的学校表现得分[（55.00±18.95）分]低于一般疾病组[（68.39±13.65）分]和正常对照组[（83.66±11.29）分]儿童,差异有显著统计学意义（P〈0.01）。结论脑性瘫痪患儿的生理功能、社交功能及总体生存质量明显低于一般疾病患儿及正常儿童,其情感功能低于正常儿童,但是与一般疾病患儿无明显差异,提示脑性瘫痪患儿生存质量存在明显的损害,而对情感功能的损害相对较小;脑性瘫痪患儿的学校表现较一般疾病组和正常对照组儿童差,提示疾病对脑性瘫痪患儿的学校表现有严重影响。因此,对脑性瘫痪患儿的康复应是对其生存质量的全面提高。     

脑性瘫痪儿童康复训练的个案研究

对1例痉挛型小儿脑性瘫痪的女童-小兰进行了康复训练。在对小兰的行为和运动技能、自理技能、智力等各方面进行评估的基础上,为其制定了个别化的训练康复计划,进行了运动能力、自理技能方面的训练。通过两个阶段的训练,小兰在各方面有了不同程度的提高和改善。     

脑性瘫痪儿童康复训练的个案研究

对1例痉挛型小儿脑性瘫痪的女童—小兰进行了康复训练。在对小兰的行为和运动技能、自理技能、智力等各方面进行评估的基础上，为其制定了个别化的训练康复计划。进行了运动能力、自理技能方面的训练。通过两个阶段的训练，小兰在各方面有了不同程度的提高和改善。     

儿童脑性瘫痪研究现状分析

目的：对中国期刊网十年来的有关儿童脑性瘫痪(简称脑瘫)的学术性研究文章进行搜索、归类、统计，分析、整理出近年来此研究的脉络、方向、领域以及被忽视而又急需研究解决的问题。资料来源：应用计算机检索中国期刊网1994—01／2004—07与脑瘫儿童研究相关的文献，检索词“小儿脑瘫，小儿脑性瘫痪，脑性瘫痪儿童，脑性瘫痪患儿，脑瘫儿童，脑瘫患儿”，限定语言种类为中文。同时，手工查找近年出版的中文相关著作及英文期刊。资料选择：对资料进行初审，开始查找全文。纳入标准为：①脑瘫儿童的临床试验。②研究对象年龄18岁。排除标准：①重复性的文献。②一般性的经验总结。资料提炼：共收集到834篇关于脑瘫儿童的研究，810篇被纳入。排除的24篇系重复的同一研究及一般性的经验总结。资料综合：810篇文献，从语言障碍、听觉障碍、视觉障碍、运动、姿势异常、心理障碍、智力低下、病因研究、检查诊断、其他研究等九个方面对脑瘫儿童的研究现状进行归类。结论：近十年的研究重点集中于脑瘫儿童所伴有的运动、姿势异常领域及检查诊断方面；其次是病因探讨及伴随他们的智力障碍、语言障碍、听觉障碍、视觉障碍、心理障碍等。医学研究者多重医疗；教育界刊物对脑瘫儿童研究成果的公开出版交流较少。     

基于ICF-CY框架的“医学、教育、家庭与医务社工”四位一体全人康复模式在脑性瘫痪儿童中的应用

目的:比较两种不同康复模式对脑瘫患儿整体功能的康复效果.方法:将60例脑瘫患儿随机分为对照组和观察组,每组30例.对照组应用“现代医学康复+传统医学康复+家庭医学康复”的三结合康复模式治疗,观察组应用“医学、教育、家庭与医务社工”四位一体全人康复模式治疗,采用粗大运动功能评估(GMFM-88项)、Peabody精细运动...     

儿童脑性瘫痪研究现状分析

目的:对中国期刊网十年来的有关儿童脑性瘫痪(简称脑瘫)的学术性研究文章进行搜索、归类、统计,分析、整理出近年来此研究的脉络、方向、领域以及被忽视而又急需研究解决的问题。资料来源:应用计算机检索中国期刊网1994-01/2004-07与脑瘫儿童研究相关的文献,检索词“小儿脑瘫,小儿脑性瘫痪,脑性瘫痪儿童,脑性瘫痪患儿,脑瘫儿童,脑瘫患儿”,限定语言种类为中文。同时,手工查找近年出版的中文相关著作及英文期刊。资料选择:对资料进行初审,开始查找全文。纳入标准为:①脑瘫儿童的临床试验。②研究对象年龄18岁。排除标准:①重复性的文献。②一般性的经验总结。资料提炼:共收集到834篇关于脑瘫儿童的研究,810篇被纳入。排除的24篇系重复的同一研究及一般性的经验总结。资料综合:810篇文献,从语言障碍、听觉障碍、视觉障碍、运动、姿势异常、心理障碍、智力低下、病因研究、检查诊断、其他研究等九个方面对脑瘫儿童的研究现状进行归类。结论:近十年的研究重点集中于脑瘫儿童所伴有的运动、姿势异常领域及检查诊断方面;其次是病因探讨及伴随他们的智力障碍、语言障碍、听觉障碍、视觉障碍、心理障碍等。医学研究者多重医疗;教育界刊物对脑瘫儿童研究成果的公开出版交流较少。     

脑性瘫痪儿童的早期干预

脑瘫是引起儿童运动残疾的主要疾病。随着近年来对脑瘫诊断和治疗的研究不断深入 ,人们普遍认为早期干预对脑瘫的治疗起着不可替代的作用。目前国内对脑瘫儿童实施早期干预方面做了大量的工作 ,本文就最近几年来早期干预的对象、诊断方法、诊断用语、干预方法及疗效评诂等方面的情况综述如下 :1干预的对象早期干预应该确立适当的范围 ,过度扩大早期干预的范围会增加医疗机构和家长的负担。目前早期干预的对象主要集中在脑瘫患儿和有高危因素的婴儿。一般脑瘫患儿在 6个月到 1岁都能做出诊断 ,所以多数学者把 1岁以内的脑瘫患儿列入早期干预…     

儿童脑性瘫痪痉挛的治疗

脑性瘫痪 (脑瘫 )可分为痉挛型、随意运动障碍型、失调型和混合型[1 ] 。尽管脑瘫定义的特征不是痉挛 ,而是不能控制运动和姿势 ,但大多数脑瘫患者均存在明显的痉挛症状。由于痉挛限制了患儿运动范围 ,可诱发形成固定化的异常姿势 ,导致疼痛 ,从而引发一系列生物力学及形态学改变 ,进一步加重对移动能力的限制。患儿由于移动受限 ,将面临很多并发症的威胁 ,如骨质疏松、关节挛缩、脊柱侧凸、心脏病、肥胖或营养不良等 ,心理上还会因过分依赖他人或失去自由而出现沮丧、失望、自卑等反应。目前治疗脑性瘫痪痉挛的方法很多 ,其疗效、副作用、…     

195例脑性瘫痪儿童合并症分析

目的 分析脑瘫儿童伴发的合并症。方法 对195例脑瘫儿童（男性113例、女性82例，年龄7个月～11岁）除做一般性检查外，常规做脑电图、眼底检查、听性脑干反应、Gesell发育量表测试等，分析伴发合并症。结果 195例患儿中，伴单纯运动障碍27例（13．8％）；168例（86．2％）伴有1种或多种并发损害，其中精神发育迟滞168例（86．2％）、视力障碍92例（47．2％）、体格发育落后40例（20．5％）、癫痫25例（12．8％）、听力障碍12例（6．2％）、头小畸型11例（5．6％）、行为异常3例（1．5％）；伴二重损害15例（7．7％）、三重损害123例（63．1％）、四重损害30例（15．4％）。结论 脑瘫儿童多合并各种功能障碍。     

Activities and participation of children with cerebral palsy: parent perspectives

Abstract

Purpose: To explore parents’ views of the activities and participation of children with cerebral palsy (CP) with a range of communicative abilities and the factors (personal and environmental) that influenced these. Methods: Thirteen parents of children with CP aged 4—9 years participated in semi—structured individual interviews. Interviews were recorded, transcribed and analysed thematically. Identified codes and themes were mapped to the domains of the International Classification of Functioning, Disability and Health — Children and Youth Version (ICF-CY). Results: Parents’ responses reflected all ICF-CY domains comprising activity, participation and environmental factors. Codes were primarily mapped to the domains learning and applying knowledge, communication, mobility and interpersonal interactions and relationships. Key barriers identified included aspects of parents’ own interactions with their child (e.g. not offering choices), unfamiliar people and settings, negative attitudes of others and children’s frustration. Facilitators included support received from the child’s family and school, being amongst children, having a familiar routine and the child’s positive disposition. Conclusions: Despite the barriers experienced, children participated in a range of activities. Parents placed importance on communication and its influence on children’s independence, behaviour and relationships. Barriers and facilitators identified highlight aspects of the environment that could be modified through intervention to enhance communication and participation.

• Implications for Rehabilitation

• Children’s activities and participation were largely related to early learning tasks (e.g. literacy), communication, mobility and interactions.

• Intervention aimed at improving activities and participation may address the various child, impairment, social and environment factors identified here as impacting on activities and participation (e.g. the child’s personal characteristics, communication and physical impairments, the support and attitudes of others and the familiarity of the environment).

• Therapists will need to consider (and manage) the potential negative impact communication deficits may have on children’s behaviour, independence and social skills which may in turn detrimentally impact on activity and participation.

     

Identifying assessment measures and interventions reported for Thai children with cerebral palsy using the ICF-CY framework

Background: Cerebral palsy (CP) is the most common disability in childhood. The International Classification of Functioning, Disability and Health (ICF) provides a standard framework for classifying performance in people with disability, including children with CP. Linking measures actually reported with the ICF classification promotes best practice, especially pertinent in developing countries such as Thailand. This study aimed to explore the charted demographic data, assessment and intervention measures reported for children with CP in Central region of Thailand using the ICF for children and youths (ICF-CY) framework to clarify the scope of actual management practice in this population. Methods: Charts of children admitted to four public hospitals and two schools in 2007–2009 were age stratified, and approximately 48% audited (n?=?269). Results: Contextual information was clearly reported, and measures could be classified across all components of the ICF, being mainly classified in Body Structures and Functions and to a lesser degree, in Activities and Participation. Our ability to compare across cultures was affected by poor recording practices limiting the amount and quality of data available. Conclusions: Classifying measures of children with CP in Thailand in terms of the ICF-CY framework demonstrates their holistic management as well as where gaps need to be addressed, and thus contributes to best practice.

Implications for Rehabilitation

• Assessments and interventions reported for children with CP in Central region, Thailand cover all components of the ICF-CY, and describe the individual roles of the Inter-professional team members.

• Local health practitioners should consistently conform with internationally practice by using Standardized tools assessing all components of the ICF

• Consistent and uniform charting practices should be used to provide accurate interpretation of actual practice, as well as a clear pathway from assessment to intervention.

     

Content comparison of health-related quality of life measures for cerebral palsy based on the International Classification of Functioning

Purpose.?Content comparison of health-related quality of life ((HRQOL)) measures is currently important because of the varying use of concepts and operationalisations. Our objective was to use the International Classification of Functioning Children and Youth version ((ICF-CY)) as a standard by which to compare the content of all cerebral palsy ((CP)) disease-specific HRQOL measures.

Methods.?MEDLINE and PsycINFO databases were searched up to September 2008. The content of HRQOL measures was linked to the ICF-CY by two trained assessors. Agreement was calculated using kappa ((κ)) statistic.

Results.?Four disease-specific HRQOL measures were identified. Three generic measures were selected as a content comparison group. A total of 576 concepts contained in the measures were identified. Eighty-nine percent ((n == 510)) were linked to 127 different ICF-CY categories. Overall κ agreement was 0.76 ((95%% CI: 0.75–0.77)). Forty percent of concepts were linked to the activity and participation component. The measures varied in the number of concepts and the distribution of concepts by ICF-CY components.

Conclusions.?The ICF-CY provided an international accepted, structured framework for the content comparison of CP-specific and generic HRQOL measures. The results will provide clinicians and researchers with additional information, useful when selecting HRQOL measures.     

Child characteristics,caregiver characteristics,and environmental factors affecting the quality of life of caregivers of children with cerebral palsy

Purpose: The study aimed to investigate comprehensively the determinants of the quality of life (QOL) of caregivers of children with cerebral palsy (CP) based on the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY).

Methods: A total of 167 children with CP (mean age 9.06 years, SD 2.61 years) and their caregivers (mean age 40.24 years, SD 5.43 years) participated in this study. The QOL of caregivers was measured with the World Health Organization Quality of Life-BREF-Taiwan version (WHOQOL-BREF-TW). The potential determinants of QOL were collected, including child characteristics, caregiver characteristics, and environmental factors from all dimensions of the ICF-CY and analysed using multiple regression models.

Results: Four multiple regression models revealed that determinants of the QOL of caregivers of children with CP was multidimensional, encompassing child characteristics (age, type of CP, fine motor impairment, other diseases, behaviour and emotions, visual impairment, hearing impairment), caregiver characteristics (general mental health, parenting stress, marital status, family coping patterns, and socio-economic status), and environmental factors (child’s medication, school setting, and current rehabilitation service, caregiver’s spouse’s age, family life impacts, and domestic helper).

Conclusions: Knowledge of the determinants of QOL could serve as a guide in a holistic approach to evaluation and intervention and help plan interventions targeted at these determinants to improve the QOL of caregivers of children with CP.

• Implications for Rehabilitation

• Caregivers of children with CP had lower QOL, except the environment QOL.

• The QOL determinants of caregivers of children with CP are multidimensional, including child characteristics, caregiver characteristics, and environmental factors.

• In addition to child characteristics of severity of fine motor impairments and emotional and behavioural problems, caregiver characteristics of general mental health, parenting stress, and coping patterns, and environmental factors of family life impacts, and school setting demonstrated important relationships with caregiver QOL.

     

中文版上肢技巧质量测试量表信度和效度的初步研究

目的：探讨中文版上肢技巧质量测试量表（QUEST）的信度和效度,为其在国内临床应用提供理论依据.方法：经原著者允许并授权后,将英文版QUEST量表翻译成中文.研究对象为70例在康复中心就诊的痉挛型脑瘫儿童,随机选取30例检测重测信度（间隔2周）,随机选取30例检测评分者间信度.50例同时接受Peabody精细运动发育量表（PDMS-FM）与中文版QUEST量表测试,分析PDMS-FM原始分与中文版QUEST量表各分测试原始分之间的相关性,确定两者之间的平行效度.结果：中文版QUEST量表的各分测试原始分具有良好的重测信度及评估者间信度（ICC值＞0.90）,中文版QUEST量表与PDMS-FM测试的各项分测试原始分测试具有良好的平行效度（Pearson相关系数为0.717～0.921）.结论：本次研究确立了中文版QUEST量表具有良好的信度和效度,是一种可以有效评估痉挛型脑瘫患儿上肢技巧质量的工具.     

Fundamental movement skills testing in children with cerebral palsy

Purpose.?To examine the inter-rater reliability and comparative validity of product-oriented and process-oriented measures of fundamental movement skills among children with cerebral palsy (CP).

Method.?In total, 30 children with CP aged 6 to 14 years (Mean == 9.83, SD == 2.5) and classified in Gross Motor Function Classification System (GMFCS) levels I–III performed tasks of catching, throwing, kicking, horizontal jumping and running. Process-oriented assessment was undertaken using a number of components of the Test of Gross Motor Development (TGMD-2), while product-oriented assessment included measures of time taken, distance covered and number of successful task completions. Cohen's kappa, Spearman's rank correlation coefficient and tests to compare correlated correlation coefficients were performed.

Results.?Very good inter-rater reliability was found. Process-oriented measures for running and jumping had significant associations with GMFCS, as did seven product-oriented measures for catching, throwing, kicking, running and jumping. Product-oriented measures of catching, kicking and running had stronger associations with GMFCS than the corresponding process-oriented measures.

Conclusion.?Findings support the validity of process-oriented measures for running and jumping and of product-oriented measures of catching, throwing, kicking, running and jumping. However, product-oriented measures for catching, kicking and running appear to have stronger associations with functional abilities of children with CP, and are thus recommended for use in rehabilitation processes.     

中文版饮食能力分级系统在学龄前脑性瘫痪儿童中的信度与效度研究

摘要 目的：确定中文版脑瘫（CP）患儿饮食能力分级系统（EDACS）在学龄前脑瘫儿童中的信度与效度。 方法：通过分析现场评估和录像评估结果之间的一致性确定中文版EDACS及协助水平的重测信度;分析不同评估者间（照顾者,熟悉患儿情况的言语治疗师ST1和对患儿熟悉度一般的言语治疗师ST2）的评估结果确定中文版EDACS的评估者间信度;以吞咽障碍调查表（DDS）的分值为效标确定EDACS的平行效度。 结果：ST1的现场评估与录像评估结果显示, EDACS具有良好的重测信度,Kw=0.762（95%CI：0.590—0.884）,协助水平的评估结果Kw=0.807（95%CI：0.656—0.9035）。同时EDACS具有良好的评估者间信度,2名言语治疗师间的中文版EDACS评估结果Kw=0.741（95%CI：0.553—0.879）,协助水平的评估结果Kw=0.808（95%CI：0.696—0.935）。ST1与家长间的中文版EDACS评估结果Kw=0.590（95%CI：0.457—0.732）,协助水平评估结果Kw=0.635（95%CI：0.509—0.754）。EDACS与DDS分值间具有良好的平行效度, Spearman相关系数为0.889。 结论：中文版EDACS在学龄前脑瘫患儿中具有良好的评估者间信度和平行效度, 可以有效的对学龄前脑瘫患儿进行饮食功能分级。     

The reliability and validity of the Korean version of the Fullerton Advanced Balance scale in children with cerebral palsy

ABSTRACT

The Fullerton Advanced Balance (FAB) scale is a multi-item balance assessment test designed to measure balance in relatively higher functioning individuals. The purpose of this study was to examine the reliability and validity of the Korean version of the FAB in children with cerebral palsy (CP). A total of 40 children with CP participated in this study. The internal consistency of the FAB was performed using the Cronbach alpha coefficient and the test–retest reliability was assessed. To verify the concurrent validity, scores on the FAB were compared with the pediatric balance scale (PBS) using the Spearman correlation coefficient. In addition, exploratory factor analysis was measured to explore the construct validity. The FAB showed satisfactory internal consistency (Cronbach’s alpha value = 0.92) and excellent test–retest reliability (ICC = 0.99). Concurrent validity was positively correlated with the FAB and PBS (r = 0.60, p < 0.001). Exploratory factor analysis revealed two dominant factors that explained 69.85% of the total variance of the scale. The FAB is a reliable and valid tool that can be used to measure the balance abilities in children with CP.     

中西医结合的综合疗法对脑瘫患儿的临床疗效及生存质量的影响

目的探讨中西医结合的综合疗法对脑瘫患儿的临床疗效及生存质量的影响。方法将我院收治的70例脑瘫患儿按治疗方式的不同分对照组(35例,西医疗法)和观察组(35例,中西医疗法)。比较两组的临床疗效。结果治疗后,观察组的ACA、MCA、PCA平均血流速度大于对照组,Ashworth、S-S、FMA及CP QOL-Child评分均优于对照组(P<0.05)。结论中西医结合的综合疗法能改善患儿的脑血流量、肌张力、语言及运动功能,提高生存质量。     

中文版上肢技巧质量量表在脑性瘫痪患儿上肢功能评定中的信度和效度

目的:评估中文版上肢技巧质量量表(quality of upper extremity skills test,QUEST)在痉挛型脑瘫患儿上肢功能评定中的信度和效度。方法:将英文版QUEST翻译并完善成中文版,研究对象为75例在我院就诊的痉挛型脑瘫儿童,检测其重测信度及评定者间信度。同时进行Peabody运动发育量表的精细运动部分(peabody developmental motor scale fine motor,PDMS-FM),精细运动能力(fine motor function measure scale,FMFM),分析PDMS-FM原始分、FMFM各区分数与中文版QUEST各分测试项原始分之间的相关性,评估量表的平行效度。结果:中文版QUEST分测试项得分及总分具有优良的重测信度及评估者间信度(ICC值均0.890),中文版QUEST分测试项原始分与PDMS-FM、FMFM各区原始分间具有较好的平行效度(Pearson/Spearson秩相关系数分别为r1=0.563—0.816、r2=0.389—0.830)。结论:中文版QUEST量表具有良好的信度和效度,可以作为评估痉挛型脑瘫患儿上肢运动功能的首选方法。