Mothers of children with cerebral palsy with or without epilepsy: a quality of life perspective

Purpose.?Disability in a child affects not only the child's life but also the family's life. The aim of our study is to verify the quality of life (QOL) of mothers of disabled children with cerebral palsy (CP) with epilepsy compared with non-epilepsy children evaluated in a Brazilian center.

Methods.?Thirty mothers of disabled children participated in the study. The control group comprised of 18 healthy mothers of children without disabilities. All mothers agreed to participate in the study. They completed the evaluation forms of the SF-36 health survey, a well-documented, self-administered QOL scoring system.

Results.?The results of our study support the premise that mothers of children with CP, as a group, have poorer QOL than mothers of not disabled children.

Conclusions.?We also observed that mothers of children with CP and epilepsy have poorer QOL than mothers of children with CP without epilepsy.     

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。     

Measuring quality of life in cerebral palsy children..

Objectives

To identify and describe available health-related quality of life (HRQL) markers in walking paediatric cerebral palsy (CP) patients.

Methods

A Medline literature review (1980-2007); content, application field, and metrologic properties of the scales were specified.

Results

Seventeen scales were identified and classified into three categories: scales developed for cerebral palsy patients or developed for neuromotor pathologies and used mostly in cerebral palsy patients; generic scales developed for the general population; generic scales developed for chronic, non-specific diseases.

Discussion and Conclusion

Documentation of metrologic properties in available HRQL scales is unequal. Information about “sensitivity to change” of the scales is necessary for their use in therapeutic outcome or cohort follow-up studies in CP patients. To include an analysis of the patient's opinion is important, thus most of the questionnaires are based on the experimenter's experience and synthesis of the literature. CP children's auto-evaluation of their quality of life using a questionnaire developed based on the patients’ and families’ opinions, in association with a participation questionnaire, seems to be the most informative method to include in outcome studies.     

A comparison of activity,participation and quality of life in children with and without spastic diplegia cerebral palsy

Purpose: To measure activity, participation and QoL in children with CP and to determine how these differ from a comparable group of typically developing (TD) children.Method: A total of eleven males and eight females with CP ranging in age from 5 to 12 years (mean age 7 years 10 months, SD 1 year 10 months; GMFCS level I–II) and 19 age and sex matched TD peers were recruited. Activity was measured using Paediatric Activity Card Sort (PACS), 6-Minute Walk Test and Timed Up and Go Test (TUG). Participation was measured using the assessment of Life Habits (LIFE-H) and quality of life was measured using the Cerebral Palsy Quality of Life Questionnaire (CP-QoL).Results: TD children performed more activities of personal care than children with CP, as assessed via the PACS, t(40)?=?3.266, p?=?0.002. TD children participate in more life habits than children with CP across all the LIFE-H domains except that of relationships. Results from the CP-QoL indicate that TD children experience a greater QoL in the domains of functioning, t(40)?=?2.824, p?=?0.007, and participation and physical health, t(40)?=?3.543, p?=?0.001, than children with CP.Conclusions: These findings encourage the development of therapeutic interventions that aim to reduce these imbalances at all levels of the International Classification of Functioning, Disability and Health.

Implications for Rehabilitation

• This paper offers a comprehensive approach to assessment of children with cerebral palsy using the ICF framework.

• It offers insight into the significant differences that children with mild to moderate CP experience when compared to their typically developing peers and identifies key areas to direct interventions.

     

脑瘫儿童母亲生活质量及其影响因素分析

目的 探讨脑瘫儿童母亲生活质量及其影响因素.方法 对123例脑瘫患儿及其母亲发放患儿基本情况调查表和美国简明健康测量量表SF-36,采用自填与访谈相结合的方式进行调查并统计,然后采用t检验、相关分析及单因素方差分析,对其影响因素进行分析;采用多元回归分析方法筛选和分析其生活质量的主要影响因素.结果 脑瘫儿童母亲的总体生活质量普遍下降,其中情感职能、活力、总体健康得分最低,分别为55.28、60.49和65.26分.脑瘫儿童母亲生活质量各个维度的相关性分析显示,患儿年龄与总体健康、生理功能、情感职能三个维度呈正相关(相关系数分别为0.213、0.191、0.298,P＜0.05);患儿病情与除身体疼痛外的其它七个维度呈负相关;母亲年龄仅与社会功能呈正相关(相关系数为0.196,P＜0.05);母亲文化程度与总体健康、情感职能、社会功能、精神健康呈负相关(相关系数分别为-0.274、-0.312、-0.427和-0.180,P＜0.05).单因素分析显示,患儿年龄、患儿病情、父亲职业、母亲职业、母亲文化程度五个因素对母亲生活质量的影响具有统计学意义(P＜0.05).以生活质量总积分为因变量,多元线性逐步回归分析(Pin=0.05,Pout=0.10)显示,患儿病情、父亲职业两个因素进入多元线性回归方程,差异有统计学意义(P＜0.05).结论 患儿年龄、患儿病情、母亲文化程度、母亲职业、父亲职业五项因素是影响脑瘫儿童母亲生活质量的主要因素;针对脑瘫儿童母亲的心理特征,采取综合性全方位的干预措施,可提高患儿康复效果和改善母亲生活质量.     

Characteristics influencing participation of Australian children with cerebral palsy

Purpose.?To investigate the extent to which selected individual, family and environmental variables were associated with participation of children who have cerebral palsy in activities outside school.

Methods.?Data were gathered through a population-based survey of 114 children born in 1994 or 1995 in Victoria, Australia. Participation was measured using the Children's Assessment of Participation and Enjoyment. Selected independent variables were classified as related to the child, family or environment. Linear regression analysis was used to identify variables associated with participation in informal (activities that require little planning) and formal (those with structure and leaders) activities.

Results.?Participation in informal activities tended to be greater in children who preferred informal activities and who had higher manual ability (adjusted R²?=?36.3%). Girls and those with better gross motor function also tended to participate in more activities. The explanatory power of the regression model for participation in formal activities was limited (adjusted R²?=?4.2%).

Conclusion.?Knowing a child's activity preferences is critical to intervention planning. Being exposed to a range of activities within supportive environments may provide the opportunity to develop preferences, especially in activities where children with cerebral palsy have reduced participation, such as in physical activities.     

Relationship between quality of life and functional status of young adults and adults with cerebral palsy

Purpose.?The aim of this study was investigate the relation between health related quality of life (HRQoL) and functional status in young adult or adult cerebral palsied individuals.

Methods.?The study included 45 cerebral palsied subjects who were divided into two groups as young adults (n?=?21, group 1) and adults (n?=?24, group 2), over the age 15 years. Gross Motor Function Classification System (GMFCS), Functional Independence Measurement (FIM), Physical Mobility Scale (PMS), Nottingham Health Profile (NHP), Visual Analogue Scale (VAS) were used as outcome measures.

Results.?In group 1, GMFCS and PMS scores were significantly correlated with total the total score of FIM (p?<?0.05). Although total FIM, PMS, LS and GMFCS scores were not correlated with the total NHP score (p?>?0.05), pain subscale of NHP was significantly correlated with self care and mobility subscales of FIM (p?<?0.05). Also, self care, mobility, locomotion subscales and total score of FIM were highly correlated with the physical activity subscale of NHP (p?<?0.05). In group 2, our findings were also similar to those of young adults when the relations between total NHP score and total FIM, PMS, LS and GMFCS were investigated (p?>?0.05) and also some subscales of FIM and NHP presented high correlations in between. In addition, there were significant differences between the groups in GMFCS, LS and locomotion and self care subscales of FIM (p?<?0.05).

Conclusion.?Although HRQoL in young cerebral palsied individuals seems to be more effected by parameters related to physical condition, in cerebral palsied adults psychological and emotional aspects may be more important indicators related to HRQoL. For that reasons, more population specific measures have to be developed for in-depth analysis of these factors.     

脑性瘫痪儿童运动功能与生存质量之间的相关性分析

目的:分析4—12岁脑瘫儿童运动功能与生存质量之间的相关性。方法:以2014年4—6月期间在复旦大学附属儿科医院康复中心、上海市徐汇区华泾社区卫生服务中心儿童康复科、上海市闵行区江川社区卫生服务中心儿童康复科、上海市宝山区金惠康复医院和上海市浦东特殊教育学校接受康复干预的4—12岁的脑瘫儿童和家庭为研究对象,共90例脑瘫儿童和家长纳入研究,其中脑瘫儿童包括男性54例,女性36例,平均年龄(7.40±2.44)岁;4—7岁59例,8—12岁31例,采用中文版脑瘫儿童生存质量问卷(cerebral palsy quality of life,CPQOL)评价生存质量,采用中文版脑瘫粗大运动功能分级系统(gross motor function classification system,GMFCS)进行粗大运动功能分级。采用中文版脑瘫患儿手功能的分级系统(manual ability classification system,MACS)进行手功能分级,通过分析GMFCS、MACS与CPQOL各项分值之间的相关性明确脑瘫儿童运动功能与生存质量之间的关系。结果:GMFCS分级与7个CPQOL分区中的5个分区有着较弱的相关性,其中与社会福祉和受容度、功能、参与能力与躯体健康、情绪健康与自尊4个分区为负相关(r=-0.29—-0.38,P0.05),表明GMFCS分级越高上述4个分区的分值就越低,也就是相关的生存质量就越低,此外GMFCS分级还与疼痛和残障的影响分区呈现较弱的正相关(r=0.28,P0.05),表明GMFCS分级越高,脑瘫儿童受到疼痛和残障的影响就越明显。与GMFCS相比,MACS只有与CPQOL的社会福祉和受容度、功能两个分区呈现更弱的相关性(r=-0.27,P0.01;r=-0.23,P0.05)。与较小年龄脑瘫儿童(4—7岁)相比年龄较大脑瘫儿童(8—12岁)的GMFCS分级与CPQOL各分区的相关性更为明显。结论:粗大运动功能在一定程度上影响着脑瘫儿童的生存质量,与粗大运动功能相比手功能对生存质量的影响较小,较大年龄组脑瘫儿童的粗大运动功能与生存质量之间的关系更为密切。     

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.     

Health-related quality of life in childhood cerebral palsy

OBJECTIVE: To describe the health-related quality of life (HRQOL) of a cross-section of children with cerebral palsy (CP) using the Child Health Questionnaire. DESIGN: Survey of the parents or guardians of children with CP. SETTING: Outpatient clinics at a tertiary care children's hospital. PARTICIPANTS: Children (N=177; 98 boys, 79 girls; mean age +/- standard deviation [SD], 8.6+/-4.2y) with CP were enrolled as a convenience sample. Study subjects were stratified by severity of CP using the Gross Motor Function Classification System. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: HRQOL scores, as determined by the Child Health Questionnaire-Parent Form 50. RESULTS: Parents reported reduced HRQOL for their children with CP. In the physical function domain, most children scored over 3 SDs below a normative sample, and scores in parental impact domains were at least 1 SD below the normative sample. Psychosocial domains were less impaired. Most of the effects on physical and parent impact domains were greater in children with more severe CP, although they were significant in most strata of severity. CONCLUSIONS: Children with CP have reduced HRQOL and the degree to which it is reduced is related to the severity of their CP.     

家庭中心式护理对脑瘫患儿家长生存质量的影响

目的：了解家庭中心式护理对脑瘫患儿家长生存质量的影响。方法选择脑瘫患儿家长104名,将2011年2-5月抽取的52名脑瘫患儿家长作为干预组,2010年10月-2011年1月抽取的52例脑瘫患儿家长作为对照组。对干预组家庭实施家庭中心式护理模式,对照组采用普通护理模式。干预前后用世界卫生组织生存质量测定量表简表（ WHOQOL-BREF ）和纽卡斯尔护理服务满意度量表（ NSNS）进行评估。结果干预前两组患者的 WHOQOL-BREF 各领域得分差异无统计学意义（ P ＞0．05）。干预后,干预组WHOQOL-BREF各领域得分为生理领域（62．64＆#177;13．63）分,心理领域（59．46＆#177;14．15）分,社会关系领域（63．41＆#177;13．40）分,环境领域（48．52＆#177;15．20）分,NSNS得分（57．15＆#177;6．38）分,均要高于对照组的（54．40＆#177;13．22）,（47．12＆#177;16．16）,（53．98＆#177;13．52）,（42．43＆#177;13．35）,（51．42＆#177;7．90）分,差异有统计学意义（Z分别为-3．139,-4．136,-3．792,-2．232,-4．725;P＜0．05）;干预组自身对照,干预后WHOQOL-BREF各领域得分均高于干预前,差异有统计学意义（ Z分别为-4．213,-4．068,-3．299,-4．160;P＜0．05）。结论家庭中心式护理模式可以提高脑瘫患儿住院康复治疗期间患儿家长的生存质量,并提高他们对护理服务的满意度。     

康复训练对脑瘫患儿日常生活能力的影响

目的:探讨运用易化技术和引导式教育相结合的方法进行康复训练对促进脑瘫患儿日常生活能力恢复的效果。方法:自2008年3～6月,我们对42例住院脑瘫患儿在进行康复训练时进行了初、中、末期评估,运用中国康复中心使用的ADL评估表对42例患儿进行日常生活能力评估,观察患儿的康复训练效果。结果:通过为期3个月的康复训练,其各项指标的恢复均具有明显的统计学意义(P0.01或P0.05)。结论:易化技术和引导式教育对脑瘫患儿日常生活能力的提高,具有良好的作用。     

A systematic review of the effectiveness of treadmill training for children with cerebral palsy

Purpose.?The development of efficient and independent walking is an important therapeutic goal for many children with cerebral palsy (CP). Consequently, there has been growing interest in determining the effects of treadmill training programs for these children.

Method.?A systematic review of the literature was conducted to evaluate the effectiveness of treadmill training for children with CP. Relevant trials were identified by searching electronic databases and by citation tracking.

Results.?Of 125 papers initially identified, five met the criteria for review. Results showed that treadmill training is safe and feasible for children with CP across a wide range of ages and functional abilities. Children with more severely affected walking ability significantly increased their walking speed (d?=?1.48, 95% CI: 0.49–2.40) and gross motor performance (d?=?1.5, 95% CI: 0.50–2.50) after training. However, the results also suggested that treadmill speed and length of training sessions might need to be set to specifically match desired intervention goals such as increasing walking speed or endurance.

Conclusions.?The review suggests that treadmill training is safe and feasible for children with CP and indicates that there may be some positive benefits in walking speed over short distances and in general gross motor skills. The provision of PBWS may be particularly beneficial for children with more severe walking disability (GMFCS III and IV). Further research is necessary before it can be concluded that treadmill training is beneficial for children with CP.     

脑性瘫痪患儿父母生活质量及其影响因素的研究

目的 探讨脑性瘫痪患儿父母的生活质量影响因素.方法 采用问卷调查法,对103名脑性瘫痪患儿父母和100名健康儿童父母进行问卷调查,调查内容包括父母的一般情况、生活质量、心理压力、应对方式、社会支持及婚姻满意度.结果 脑性瘫痪患儿父母的生活质量得分低于正常儿童父母,差异具有统计学意义(P＜0.01);脑性瘫痪患儿父母生活质量的影响因素有社会支持、心理压力及患儿病程(P＜0.05);社会支持差,心理压力大,患儿病程短的父母生活质量较差.结论 脑性瘫痪患儿父母的生活质量低于健康儿童父母,其生活质量主要的影响因素有社会支持水平、心理压力和患儿病程.应着重加强对脑性瘫痪患儿父母心理压力、社会支持方面的护理干预,尤其应加强对病程较短的脑性瘫痪患儿的父母进行心理辅导.     

Prospective longitudinal study of gross motor function in children with cerebral palsy

OBJECTIVES: To describe the course of gross motor function over 2 years in children with cerebral palsy (CP) aged 9 to 15 years, and to investigate its relationship with impairments and age. DESIGN: Prospective cohort study. SETTING: Rehabilitation department of a university medical center in the Netherlands. PARTICIPANTS: Seventy boys and 40 girls with CP (mean age +/- standard deviation, 11.2+/-1.7y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The Gross Motor Function Measure (GMFM). RESULTS: GMFM item scores were stable over the 2 years for the whole group. No difference was found in the course of GMFM item scores between the Gross Motor Function Classification System (GMFCS) levels. We found significant differences in the course of GMFM item scores (corrected for GMFCS) for the different levels of limb distribution, selective motor control, muscle strength, range of motion in the hip and knee, spasticity of the hamstrings, and type of education. There were significantly larger decreases in the more severely affected children. Multivariable analysis showed that a poor selective motor control was the most important determinant of a less favorable course of gross motor function. CONCLUSIONS: Some impairment characteristics may be used to identify children who are at risk for deterioration in gross motor function, and may serve as a guide for interventions.     

Criterion-related validity of the Test of Children's Speech sentence intelligibility measure for children with cerebral palsy and dysarthria

Abstract

Purpose: To evaluate the criterion-related validity of the TOCS+ sentence measure (TOCS+, ) for children with dysarthria and CP by comparing intelligibility and rate scores obtained concurrently from the TOCS+ and from a conversational sample.

Method: Twenty children (3 to 10 years old) diagnosed with spastic cerebral palsy (CP) participated. Nineteen children also had a confirmed diagnosis of dysarthria. Children's intelligibility and speaking rate scores obtained from the TOCS+, which uses imitation of sets of randomly selected items ranging from 2–7 words (80 words in total) and from a contiguous 100-word conversational speech were compared.

Results: Mean intelligibility scores were 46.5% (SD = 26.4%) and 50.9% (SD = 19.1%) and mean rates in words per minute (WPM) were 90.2 (SD = 22.3) and 94.1 (SD = 25.6), respectively, for the TOCS+ and conversational samples. No significant differences were found between the two conditions for intelligibility or rate scores. Strong correlations were found between the TOCS+ and conversational samples for intelligibility (r = 0.86; p < 0.001) and WPM (r = 0.77; p < 0.001), supporting the criterion validity of the TOCS+ sentence task as a time efficient procedure for measuring intelligibility and rate in children with CP, with and without confirmed dysarthria.

Conclusion: The results support the criterion validity of the TOCS+ sentence task as a time efficient procedure for measuring intelligibility and rate in children with CP, with and without confirmed dysarthria. Children varied in their relative performance on the two speaking tasks, reflecting the complexity of factors that influence intelligibility and rate scores.