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Health-related quality of life in children with cerebral palsy and their families.脑瘫患儿及其家庭的健康相关生活质量。
Indian Pediatr. 2014 May;51(5):385-7. doi: 10.1007/s13312-014-0414-z.
2
Factors related to psychosocial quality of life for children with cerebral palsy.与脑瘫儿童心理社会生活质量相关的因素。
Int J Pediatr. 2014;2014:204386. doi: 10.1155/2014/204386. Epub 2014 Jan 23.
3
Pain in children with cerebral palsy: a cross-sectional multicentre European study.脑瘫儿童的疼痛:一项跨欧洲中心的横断面研究。
Acta Paediatr. 2010 Mar;99(3):446-51. doi: 10.1111/j.1651-2227.2009.01626.x. Epub 2009 Dec 10.
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Health status of children with cerebral palsy living in Europe: a multi-centre study.欧洲脑瘫儿童的健康状况:一项多中心研究。
Child Care Health Dev. 2008 Nov;34(6):806-14. doi: 10.1111/j.1365-2214.2008.00877.x.
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Management of motor problems in cerebral palsy: a critical update for the clinician.脑瘫运动问题的管理:给临床医生的重要更新
Eur J Paediatr Neurol. 2009 Sep;13(5):387-96. doi: 10.1016/j.ejpn.2008.07.009. Epub 2008 Sep 7.
6
Parent and professional reports of the quality of life of children with cerebral palsy and associated intellectual impairment.脑瘫及相关智力障碍儿童生活质量的家长和专业人员报告。
Dev Med Child Neurol. 2008 Aug;50(8):618-24. doi: 10.1111/j.1469-8749.2008.03026.x.
7
The relationship of physical activity to health status and quality of life in cerebral palsy.脑瘫患者身体活动与健康状况及生活质量的关系。
Pediatr Phys Ther. 2008 Fall;20(3):247-53. doi: 10.1097/PEP.0b013e318181a959.
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Measuring quality of life in cerebral palsy children.
Ann Readapt Med Phys. 2008 Mar;51(2):119-37. doi: 10.1016/j.annrmp.2007.12.002. Epub 2008 Jan 7.
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Parent-reported quality of life of children with cerebral palsy in Europe.欧洲脑瘫儿童家长报告的生活质量
Pediatrics. 2008 Jan;121(1):54-64. doi: 10.1542/peds.2007-0854.
10
Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study.8至12岁脑瘫儿童的自我报告生活质量:一项欧洲横断面研究。
Lancet. 2007 Jun 30;369(9580):2171-2178. doi: 10.1016/S0140-6736(07)61013-7.

照顾者报告的脑瘫儿童及其家庭的健康相关生活质量及其与粗大运动功能的关联:一项南印度研究。

Caregiver-reported health-related quality of life of children with cerebral palsy and their families and its association with gross motor function: A South Indian study.

作者信息

Surender S, Gowda Vykuntaraju K, Sanjay K S, Basavaraja G V, Benakappa Naveen, Benakappa Asha

机构信息

Department of Paediatrics, Indira Gandhi Institute of Child Health, Bengaluru, Karnataka, India.

Department of Paediatric Neurology, Indira Gandhi Institute of Child Health, Bengaluru, Karnataka, India.

出版信息

J Neurosci Rural Pract. 2016 Apr-Jun;7(2):223-7. doi: 10.4103/0976-3147.178657.

DOI:10.4103/0976-3147.178657
PMID:27114652
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4821929/
Abstract

INTRODUCTION

In children, health-related quality of life (HRQOL) includes parental impact and family functioning along with concepts of illness, functional status, mental health, and comfort. We are focusing on the impact of cerebral palsy (CP) on children's HRQOL and their families, and its relationship with gross motor dysfunction.

SUBJECTS AND METHODS

CP children aged 3-10 years under regular neurology follow-up were enrolled. The HRQOL and motor severity were prospectively assessed using lifestyle assessment questionnaire-CP and gross motor function classification systems, respectively.

RESULTS

One hundred children participated in this study. Thirty-three percent of children had good, 22% had mildly affected, whereas 45% had moderately to severely affected HRQOL. A significant association is present between gross motor function classification system and HRQOL.

CONCLUSION

HRQOL in CP and their caregivers is highly impaired. The degree of impairment is associated with physical independence, mobility, clinical burden, and social integration dimensions. Therapies targeting these dimensions and associated comorbidities will improve the HRQOL. Gross motor function classification system is a good indicator of HRQOL.

摘要

引言

在儿童中,健康相关生活质量(HRQOL)包括父母的影响、家庭功能以及疾病、功能状态、心理健康和舒适度等概念。我们关注的是脑瘫(CP)对儿童HRQOL及其家庭的影响,以及它与粗大运动功能障碍的关系。

研究对象与方法

纳入在神经内科定期随访的3至10岁脑瘫儿童。分别使用生活方式评估问卷 - CP和粗大运动功能分类系统对HRQOL和运动严重程度进行前瞻性评估。

结果

100名儿童参与了本研究。33%的儿童HRQOL良好,22%的儿童受轻度影响,而45%的儿童HRQOL受到中度至重度影响。粗大运动功能分类系统与HRQOL之间存在显著关联。

结论

脑瘫患儿及其照料者的HRQOL严重受损。受损程度与身体独立性、活动能力、临床负担和社会融合维度相关。针对这些维度及相关合并症的治疗将改善HRQOL。粗大运动功能分类系统是HRQOL的一个良好指标。