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阿曼癫痫患儿生活质量评估。

Assessment of quality of life in children with epilepsy in Oman.

机构信息

Child Health, Department of Woman and Child Health, Ministry of Health, 123, Alkhoud, Muscat, Oman.

Department of Child Health, Sultan Qaboos University Hospital, Muscat, Oman.

出版信息

J Patient Rep Outcomes. 2023 Feb 2;7(1):9. doi: 10.1186/s41687-023-00555-1.

Abstract

PURPOSE

The study aims to describe the quality of life (QoL) in Omani children with epilepsy at Sultan Qaboos University Hospital, Oman.

METHODS

One hundred and one Omani children, with an age range from 5 to 18 years, diagnosed with epilepsy were enrolled in the study over 3 months. Descriptive epidemiology was used to characterize QoL in these children. QoL was measured using the PedsQL (4.0) questionnaire, a 23-item child and parent report questionnaire. Analysis of variance (ANOVA) was used to compare mean QoL scores, and agreement between the QoL reports of children and parents was evaluated using Spearman's rho; while, Multivariate analysis of variance (MANOVA) was performed to determine differences in subscale ratings.

RESULTS

Factors affecting QoL included family status, income level, social security coverage, type of treatment, seizure frequency, age of onset, and seizure-free duration in years. Children between 5 and 7 years and females, in general, were most affected, as reflected by the overall QoL subscale. Consistency between the children's self-reports and parent proxy reports on the PedsQL™ was moderate to low.

CONCLUSION

Omani children with epilepsy have poor QoL, and their psychosocial function is severely affected. Therefore, QoL should be an important outcome measure in managing children with epilepsy rather than just seizure control.

摘要

目的

本研究旨在描述阿曼苏丹卡布斯大学医院癫痫患儿的生活质量(QoL)。

方法

本研究在 3 个月内纳入了 101 名年龄在 5 至 18 岁之间的被诊断为癫痫的阿曼儿童。采用描述性流行病学方法来描述这些儿童的 QoL。使用 PedsQL(4.0)问卷(一个 23 项的儿童和家长报告问卷)来衡量 QoL。采用方差分析(ANOVA)比较平均 QoL 评分,并使用 Spearman rho 评估儿童和家长 QoL 报告之间的一致性;同时,进行多元方差分析(MANOVA)以确定子量表评分的差异。

结果

影响 QoL 的因素包括家庭状况、收入水平、社会保障覆盖范围、治疗类型、发作频率、发病年龄和无发作持续时间(以年计)。5 至 7 岁的儿童和女性总体上受到的影响最大,这反映在整体 QoL 子量表上。儿童的自我报告与家长代理报告之间在 PedsQL™上的一致性为中等至低度。

结论

阿曼癫痫患儿的 QoL 较差,其社会心理功能受到严重影响。因此,QoL 应该成为管理癫痫儿童的重要结果衡量标准,而不仅仅是控制发作。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/53f0/9895491/e715ec684317/41687_2023_555_Fig1_HTML.jpg

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