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非瘫痪型脑瘫患儿和青少年的癫痫与代理报告的健康相关生活质量。

Epilepsy and proxy-reported health-related quality of life in children and young people with non-ambulatory cerebral palsy.

机构信息

Department of Pediatrics, Nationwide Children's Hospital and The Ohio State University College of Medicine, Columbus, Ohio, USA.

Departments of Neurology and Pediatrics, University of Virginia, Virginia, USA.

出版信息

Dev Med Child Neurol. 2023 Feb;65(2):200-206. doi: 10.1111/dmcn.15336. Epub 2022 Jul 12.

DOI:10.1111/dmcn.15336
PMID:35820144
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10084160/
Abstract

AIM

To assess the association between epilepsy characteristics and proxy-reported health-related quality of life (HRQoL) in children and young people with non-ambulatory cerebral palsy (CP) and seizures.

METHOD

This was a cross-sectional study of 164 children and young people (74 females, 90 males; mean age 10 years 6 months, range 2-21 years, SD 5 years 5 months). Caregivers completed the Child Health Index of Life with Disabilities (CPCHILD) in an outpatient setting. We utilized univariable linear regression and multivariable modeling to study relationships between variables and CPCHILD scores.

RESULTS

Gross Motor Function Classification System levels were 37% IV and 63% V. Sociodemographic factors included the Child Opportunity Index (median 51, interquartile range [IQR] 25-80). A median of 2 (IQR 1-3) antiseizure medications (ASMs) were used, and days with seizures ranged from 0 (30%) to 28 (20%) days in the previous 4 weeks. Total CPCHILD scores decreased 2.3 points for each ASM (95% confidence interval [CI] -4.1 to -0.42). Compared to persons with focal epilepsy, those with generalized epilepsy had lower total CPCHILD scores (-5.7; 95% CI -11 to -0.55). Number of days with seizures was not associated with total CPCHILD scores.

INTERPRETATION

Proxy-reported HRQoL was affected by epilepsy-specific features in children and young people with severe CP.

WHAT THIS PAPER ADDS

Health-related quality of life (HRQoL) was lower with increasing numbers of antiseizure medications. Overall quality of life (QoL) scores were lower by a similar amount, independent of seizure frequency. HRQoL was lower in persons with recent hospital admissions for epilepsy.

摘要

目的

评估非运动障碍型脑瘫(CP)伴癫痫儿童和青少年癫痫特征与代理人报告的健康相关生活质量(HRQoL)之间的关系。

方法

这是一项横断面研究,共纳入 164 名儿童和青少年(女性 74 名,男性 90 名;平均年龄 10 岁 6 个月,范围 2-21 岁,标准差 5 岁 5 个月)。在门诊环境下,照料者完成儿童健康生活指数(CPCHILD)。我们采用单变量线性回归和多变量模型来研究变量与 CPCHILD 评分之间的关系。

结果

总体运动功能分级系统(Gross Motor Function Classification System)水平为 37% IV 级和 63% V 级。社会人口学因素包括儿童机会指数(中位数 51,四分位距 [IQR] 25-80)。中位数 2(IQR 1-3)种抗癫痫药物(ASMs)被使用,在过去 4 周内,癫痫发作天数从 0(30%)到 28(20%)天不等。每增加一种 ASM,CPCHILD 总分降低 2.3 分(95%置信区间 [CI] -4.1 至 -0.42)。与局灶性癫痫患者相比,全身性癫痫患者的 CPCHILD 总分较低(-5.7;95%CI -11 至 -0.55)。癫痫发作天数与 CPCHILD 总分无关。

结论

在严重 CP 患儿和青少年中,癫痫的特定特征会影响代理人报告的 HRQoL。

本文的重要性

使用抗癫痫药物的数量越多,健康相关生活质量(HRQoL)越低。无论癫痫发作频率如何,总体生活质量(QoL)评分的下降幅度大致相同。最近因癫痫住院的患者 HRQoL 较低。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fca2/10084160/4c6371b83e1b/DMCN-65-200-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fca2/10084160/4c6371b83e1b/DMCN-65-200-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/fca2/10084160/4c6371b83e1b/DMCN-65-200-g001.jpg

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Social Determinants of Health Needs and Pediatric Health Care Use.社会决定因素对健康需求和儿科医疗保健利用的影响。
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Effect of Epilepsy on Families, Communities, and Society.癫痫对家庭、社区和社会的影响。
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Quality of life in adults with epilepsy is associated with anticonvulsant polypharmacy independent of seizure status.癫痫成年患者的生活质量与抗惊厥药物联合使用有关,且独立于癫痫发作状态。
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