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为智利唐氏综合征儿童和青少年改编生活质量量表。

Adapting a quality of life scale for children and young people with Down syndrome in Chile.

机构信息

Department of Pediatrics, School of Medicine, Pontificia Universidad Católica de Chile, Santiago, Chile.

Public Health Department, School of Medicine, Pontificia Universidad Católica de Chile, Santiago, Chile.

出版信息

Am J Med Genet A. 2024 Feb;194(2):233-242. doi: 10.1002/ajmg.a.63414. Epub 2023 Oct 8.

Abstract

In Chile, there are no validated instruments for the evaluation of quality of life (QoL) of people with Down syndrome (DS). To analyze construct validity and reliability of the KidsLife-Down scale in Chile to measure QoL in people with DS aged from 4 to 21 years. Families of boys, girls, and young people with DS between 4 and 21 years were invited to participate. The scale was answered by relatives or caregivers. To assess the internal consistency, reliability tests were performed using Cronbach's alpha coefficient. A confirmatory factor analysis was performed. The scale was answered by 531 relatives or caregivers. Cronbach's coefficient was greater than 0.7 in all the items. The confirmatory factor analysis of the scale allowed its validation for clinical use in the Chilean population. "Kids Life Down-Chile" scale has adequate psychometric properties to be used in clinical practice and to help us improve QoL with better support strategies.

摘要

在智利,没有经过验证的工具可以评估唐氏综合征(Down syndrome,DS)患者的生活质量(quality of life,QoL)。本研究旨在分析 KidsLife-Down 量表在智利的结构效度和信度,以评估 4 至 21 岁 DS 患者的 QoL。邀请了 4 至 21 岁的男孩、女孩和青少年 DS 患者的家属参加。量表由亲属或照顾者回答。为了评估内部一致性,使用 Cronbach's alpha 系数进行了可靠性测试。还进行了验证性因子分析。量表由 531 名亲属或照顾者回答。所有项目的 Cronbach 系数均大于 0.7。对量表的验证性因子分析允许其在智利人群中进行临床使用。“Kids Life Down-Chile”量表具有足够的心理测量学特性,可用于临床实践,并帮助我们通过更好的支持策略来提高 QoL。

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