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Early severe scoliosis in a patient with atypical progressive pseudorheumatoid dysplasia (PPD): Identification of two WISP3 mutations, one previously unreported.一名患有非典型进行性假性类风湿性发育不良(PPD)患者的早期严重脊柱侧弯:鉴定出两个WISP3突变,其中一个此前未被报道。
Am J Med Genet A. 2016 Jun;170(6):1595-9. doi: 10.1002/ajmg.a.37619. Epub 2016 Mar 17.
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Parent-reported pain in non-verbal children and adolescents with cerebral palsy.家长报告的非言语型脑瘫儿童和青少年的疼痛情况。
Dev Med Child Neurol. 2016 Apr;58(4):395-401. doi: 10.1111/dmcn.12943. Epub 2015 Oct 28.
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Chronic Pain Assessment Tools for Cerebral Palsy: A Systematic Review.脑瘫慢性疼痛评估工具:系统评价。
Pediatrics. 2015 Oct;136(4):e947-60. doi: 10.1542/peds.2015-0273.
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Hypovitaminosis D in widespread pain: its effect on pain perception, quality of life and nerve conduction studies.广泛疼痛中的维生素D缺乏症:其对疼痛感知、生活质量及神经传导研究的影响。
Rheumatol Int. 2015 Feb;35(2):315-22. doi: 10.1007/s00296-014-3099-7. Epub 2014 Aug 2.
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2013 Pediatric Position Development Conference: executive summary and reflections.2013 年儿科体位发育会议:执行摘要与反思。
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Characteristics of pain in children and youth with cerebral palsy.脑瘫儿童和青少年的疼痛特征。
Pediatrics. 2013 Aug;132(2):e407-13. doi: 10.1542/peds.2013-0224. Epub 2013 Jul 15.
7
Pain prevalence and its impact on the quality of life in a sample of Turkish children with cerebral palsy.土耳其脑瘫儿童样本中的疼痛患病率及其对生活质量的影响。
Disabil Rehabil. 2010;32(9):723-8. doi: 10.3109/09638280903295433.
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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。
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Assessing pain in children with intellectual disabilities.评估智障儿童的疼痛。
Pain Res Manag. 2009 Mar-Apr;14(2):116-20. doi: 10.1155/2009/642352.
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A report: the definition and classification of cerebral palsy April 2006.一份报告:《脑性瘫痪的定义与分类》,2006年4月
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对一组患有脑瘫的土耳其儿童进行疼痛评估,以及评估疼痛与他们的依赖程度、语言能力、患者生活质量、社会人口学状况、抑郁程度及其照顾者生活质量之间的关联。

Pain evaluation in a sample of Turkish children with cerebral palsy and its association with dependency level, verbal abilities, and the quality of life of patients and sociodemographic status, depression, and quality of life of their caregivers.

作者信息

Giray Esra, Şimşek Halil İbrahim, Aydoğduoğlu Mustafa, Kangal Alp Çağatay, Çelik Abdülkadir, Kurt Cihat, Karadağ Saygı Evrim

机构信息

Department of Physical Medicine and Rehabilitation, Marmara University School of Medicine, İstanbul, Turkey.

Marmara University School of Medicine, (Student), İstanbul, Turkey.

出版信息

Turk J Phys Med Rehabil. 2018 Feb 23;64(3):222-229. doi: 10.5606/tftrd.2018.1871. eCollection 2018 Sep.

DOI:10.5606/tftrd.2018.1871
PMID:31453515
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6657786/
Abstract

OBJECTIVES

This study aims to evaluate pain in children with cerebral palsy (CP), to investigate its association with dependency level, verbal abilities, and the quality of life (QoL) of children and sociodemographic status, depression levels, and QoL of their caregivers.

PATIENTS AND METHODS

Between February 2016 and April 2016, a total of 85 children (56 males, 29 females; mean age 7.1±2.5 years; range, 4 to 12 years) with CP were included. Their sociodemographic data, gross motor functional levels, verbal abilities (verbal and non- verbal) were evaluated. The children were categorized as independent (Gross Motor Function Classification System [GMFCS] 1), partially dependent (GMFCS 2,3), and totally dependent (GMFCS 4,5). The Non-Communicating Children's Pain Checklist - Revised (NCCPC-R), the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD), the Nottingham Health Profile (NHP), and the Beck Depression Inventory (BDI) were used for the evaluation.

RESULTS

A total of 50 (58.8%) of the children were verbal, while 35 (41.2%) were non-verbal. Of the patients, 47.1% were totally dependent, 37.6% were partially dependent, and 15.3% were independent. Pain was less frequent in the independent group, compared to the partially and totally dependent groups (p=0.04; p=0.013). There were no statistically significant difference in perceived pain according to the CPCHILD and NCCPC-R scores, when low and high socioeconomic status were compared (p>0.05). The QoL scores of children who were totally dependent and non-verbal were statistically significantly lower than those of the other children (p=0.0001, p=0.0001). A statistically significantly negative correlation between increased totally dependent children's QoL scores and decreased QoL scores of the caregivers was observed (r=-0.429 p=0.006). The children with pain had a decreased QoL (p=0.03). The QoL of caregivers decreased and the depression scores of caregivers increased, as the pain scores of the children increased (r=0.291, p=0.007; r=-0.455, p=0.0001).

CONCLUSION

Our study results show that pain is more frequent in children with CP who are dependent and non-verbal, and it negatively affects the QoL of both caregivers and children. Evaluation of pain and the identification of CP patients who are at high risk of experiencing pain is worthwhile, as these individuals have difficulty in verbalizing pain due to their cognitive problems, although they are at risk of experiencing pain due to chronic physical problems, such as spasticity and contracture, as well as interventions for complicated medical problems.

摘要

目的

本研究旨在评估脑瘫(CP)患儿的疼痛情况,调查其与患儿的依赖程度、语言能力、生活质量(QoL)以及社会人口学状况、抑郁水平及其照料者生活质量之间的关联。

患者与方法

2016年2月至2016年4月期间,共纳入85例CP患儿(男56例,女29例;平均年龄7.1±2.5岁;范围4至12岁)。评估了他们的社会人口学数据、粗大运动功能水平、语言能力(语言和非语言能力)。将患儿分为独立组(粗大运动功能分类系统[GMFCS]1级)、部分依赖组(GMFCS 2、3级)和完全依赖组(GMFCS 4、5级)。采用修订版非沟通儿童疼痛清单(NCCPC-R)、照料者优先事项及残疾儿童健康生活指数(CPCHILD)、诺丁汉健康概况(NHP)和贝克抑郁量表(BDI)进行评估。

结果

共有50例(58.8%)患儿有语言能力,35例(41.2%)无语言能力。患者中,47.1%为完全依赖,37.6%为部分依赖,15.3%为独立。与部分依赖组和完全依赖组相比,独立组疼痛发生率较低(p=0.04;p=0.013)。比较低社会经济地位和高社会经济地位时,根据CPCHILD和NCCPC-R评分,在感知疼痛方面无统计学显著差异(p>0.05)。完全依赖且无语言能力的患儿的生活质量得分在统计学上显著低于其他患儿(p=0.0001,p=0.0001)。观察到完全依赖患儿生活质量得分增加与照料者生活质量得分降低之间存在统计学显著的负相关(r=-0.429,p=0.006)。有疼痛的患儿生活质量下降(p=0.03)。随着患儿疼痛评分增加,照料者的生活质量下降,照料者的抑郁评分增加(r=0.291,p=0.007;r=-0.455,p=0.0001)。

结论

我们的研究结果表明,依赖且无语言能力的CP患儿疼痛更频繁,且对照料者和患儿的生活质量均有负面影响。评估疼痛并识别有高疼痛风险的CP患者是有价值的,因为这些个体由于认知问题难以表达疼痛,尽管他们因痉挛和挛缩等慢性身体问题以及复杂医疗问题的干预而有疼痛风险。