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评估耐药性癫痫患儿生活质量的单项测量方法。

Single-item measure for assessing quality of life in children with drug-resistant epilepsy.

作者信息

Conway Lauryn, Widjaja Elysa, Smith Mary Lou

机构信息

Department of Psychology Hospital for Sick Children Toronto Ontario Canada.

Department of Psychology University of Toronto Mississauga Mississauga Ontario Canada.

出版信息

Epilepsia Open. 2017 Dec 18;3(1):46-54. doi: 10.1002/epi4.12088. eCollection 2018 Mar.

Abstract

OBJECTIVE

The current study investigated the psychometric properties of a single-item quality of life (QOL) measure, the Global Quality of Life in Childhood Epilepsy question (G-QOLCE), in children with drug-resistant epilepsy.

METHOD

Data came from the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PESQOL), a multicenter prospective cohort study (n = 118) with observations collected at baseline and at 6 months of follow-up on children aged 4-18 years. QOL was measured with the QOLCE-76 and KIDSCREEN-27. The G-QOLCE was an overall QOL question derived from the QOLCE-76. Construct validity and reliability were assessed with Spearman's correlation and intraclass correlation coefficient (ICC). Responsiveness was examined through distribution-based and anchor-based methods.

RESULTS

The G-QOLCE showed moderate (r ≥ 0.30) to strong (r ≥ 0.50) correlations with composite scores, and most subscales of the QOLCE-76 and KIDSCREEN-27 at baseline and 6-month follow-up. The G-QOLCE had moderate test-retest reliability (ICC range: 0.49-0.72) and was able to detect clinically important change in patients' QOL (standardized response mean: 0.38; probability of change: 0.65; Guyatt's responsiveness statistics: 0.62 and 0.78). Caregiver anxiety and family functioning contributed most strongly to G-QOLCE scores over time.

SIGNIFICANCE

Results offer promising preliminary evidence regarding the validity, reliability, and responsiveness of the proposed single-item QOL measure. The G-QOLCE is a potentially useful tool that can be feasibly administered in a busy clinical setting to evaluate clinical status and impact of treatment outcomes in pediatric epilepsy.

摘要

目的

本研究调查了单项生活质量(QOL)测量工具——儿童癫痫全球生活质量问题(G-QOLCE)在耐药性癫痫儿童中的心理测量特性。

方法

数据来自儿童癫痫手术对健康相关生活质量影响研究(PESQOL),这是一项多中心前瞻性队列研究(n = 118),对4至18岁儿童在基线和随访6个月时进行观察。使用QOLCE-76和KIDSCREEN-27测量生活质量。G-QOLCE是一个从QOLCE-76衍生而来的总体生活质量问题。通过Spearman相关性和组内相关系数(ICC)评估结构效度和信度。通过基于分布和基于锚定的方法检查反应性。

结果

G-QOLCE在基线和6个月随访时与综合评分以及QOLCE-76和KIDSCREEN-27的大多数子量表显示出中度(r≥0.30)至强(r≥0.50)相关性。G-QOLCE具有中度的重测信度(ICC范围:0.49 - 0.72),并且能够检测患者生活质量的临床重要变化(标准化反应均值:0.38;变化概率:0.65;Guyatt反应性统计量:0.62和0.78)。随着时间的推移,照顾者焦虑和家庭功能对G-QOLCE评分的影响最为显著。

意义

研究结果为所提出的单项生活质量测量工具的效度、信度和反应性提供了有前景的初步证据。G-QOLCE是一种潜在有用的工具,可在繁忙的临床环境中切实可行地应用,以评估小儿癫痫的临床状况和治疗结果的影响。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8ca3/5839315/d8ba7d695ee5/EPI4-3-46-g001.jpg

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