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脑瘫青少年单部位多次手术治疗后的生活质量。

Quality of life in youngsters with cerebral palsy after single-event multilevel surgery.

机构信息

Rehabilitation Sciences and Physiotherapy Ghent, University College Arteveldehogeschool-Ghent University, Campus Heymans 2B3, De Pintelaan 185, BE-9000 Ghent, Belgium.

出版信息

Eur J Paediatr Neurol. 2013 Jul;17(4):401-6. doi: 10.1016/j.ejpn.2013.02.001. Epub 2013 Mar 6.

Abstract

UNLABELLED

A single event-multilevel surgery (SEMLS) is today a well-established modality of treatment in children with cerebral palsy (CP). It comprises muscle lengthening/transfers and correction of bony deformities in a single surgical session. Functional improvements after SEMLS have been examined thoroughly, however little is known about the impact of SEMLS on the quality of life (QOL) of children with CP. This study reports on the QOL of children/adolescents with CP after SEMLS. Forty patients underwent SEMLS and were classified according GMFCS levels II-V, age and time span between surgery and questioning. The Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) and an author developed questionnaire were completed to evaluate QOL. Overall, children/adolescents reported high quality of life scores after SEMLS on the CP QOL-Child. For all the domains of the CP QOL-Child the children reported significant higher scores than their parents (p < 0.05). Significant differences (p < 0.05) were found for the functional-related domains of the CP QOL-Child between GMFCS level III and levels IV-V, but not for the socio-emotional domains. Older children at the moment of surgery (15y0m-18y11m) reported significantly less 'pain and feeling about disability' than children who were younger when operated on (10y0m-14y11m). Almost all aspects included in the author developed questionnaire improved for the majority of the children after SEMLS.

CONCLUSION

After SEMLS, children with CP report high quality of life, significantly higher than their parents perceived. Function and age may influence specific aspects of QOL after SEMLS.

摘要

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单次事件多层次手术(SEMLS)如今是脑瘫(CP)患儿的一种成熟治疗方法。它包括在单次手术中进行肌肉延长/转移和矫正骨骼畸形。SEMLS 后的功能改善已得到充分研究,但对于 SEMLS 对 CP 患儿生活质量(QOL)的影响知之甚少。本研究报告了 SEMLS 后 CP 患儿的 QOL。40 例患者接受了 SEMLS,并根据 GMFCS 水平 II-V、年龄和手术与询问之间的时间间隔进行分类。采用脑瘫儿童生活质量问卷(CP QOL-Child)和作者开发的问卷评估 QOL。总体而言,SEMLS 后,患儿报告 CP QOL-Child 的生活质量评分较高。对于 CP QOL-Child 的所有领域,患儿的评分均显著高于其父母(p<0.05)。在 CP QOL-Child 的与功能相关的领域,GMFCS 水平 III 与 IV-V 之间存在显著差异(p<0.05),但在社会情感领域则没有。手术时年龄较大的患儿(15y0m-18y11m)报告的“疼痛和残疾感”明显少于手术时年龄较小的患儿(10y0m-14y11m)。SEMLS 后,作者开发的问卷中几乎所有包含的方面都改善了大多数患儿。

结论

SEMLS 后,CP 患儿报告的生活质量较高,明显高于其父母的感知。功能和年龄可能会影响 SEMLS 后特定方面的 QOL。

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