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自闭症青少年及其家庭的健康相关生活质量。

Health Related Quality of Life in Autistic Youth and Their Families.

作者信息

Nelson Meredith A, Shaffer Rebecca C, Schmitt Lauren M, Coffman Marika C, Horn Paul S, Reisinger Debra L, Erickson Craig A

机构信息

Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue MLC 4002, Cincinnati, OH, 45229, USA.

Pediatrics, University of Cincinnati School of Medicine, Cincinnati, USA.

出版信息

J Autism Dev Disord. 2025 Jun;55(6):1982-1987. doi: 10.1007/s10803-023-06054-y. Epub 2023 Aug 29.

DOI:10.1007/s10803-023-06054-y
PMID:37642877
Abstract

PURPOSE

The construct Quality of Life (QoL) involves a range of factors related to one's well-being. Individuals on the autism spectrum have been previously reported to have lower QoL. The purpose of the present study is to examine QoL in autistic individuals and their families and to evaluate associations between QoL and measures of functioning using the PedsQL 4.0.

METHOD

Thirty-six autistic youth (ages 9-21 years) and their caregivers completed the PedsQL. Caregivers completed additional measures of their children's adaptive, social, behavioral, and emotional functioning.

RESULTS

Parents and youth generally agreed on the PedsQL, with the exception of the Social Functioning domain, which youth rated higher. The parent rated PedsQL did not correlate with most areas of caregiver-rated functioning; however, there were significant negative correlations between irritability and family functioning.

CONCLUSION

Limitations of this study included small sample size; broad range of intellectual functioning; lack of sample diversity; and likely recruiting bias for a drug treatment study. Despite limitations, HRQoL is an important feature that should be measured in addition to features of autism or symptoms of co-occurring symptoms.

摘要

目的

生活质量(QoL)这一概念涉及一系列与个人幸福感相关的因素。此前有报道称,自闭症谱系障碍患者的生活质量较低。本研究的目的是调查自闭症患者及其家庭的生活质量,并使用儿童生活质量量表4.0(PedsQL 4.0)评估生活质量与功能测量指标之间的关联。

方法

36名自闭症青少年(9至21岁)及其照顾者完成了儿童生活质量量表的测评。照顾者还完成了关于其子女适应性、社交、行为和情感功能的其他测评。

结果

除社交功能领域青少年评分更高外,家长和青少年对儿童生活质量量表的测评结果总体一致。家长对儿童生活质量量表的评分与照顾者评定的大多数功能领域无关;然而,易怒情绪与家庭功能之间存在显著的负相关。

结论

本研究的局限性包括样本量小、智力功能范围广、缺乏样本多样性以及药物治疗研究可能存在的招募偏差。尽管存在局限性,但健康相关生活质量是一个重要特征,除了自闭症特征或共病症状外,还应予以测量。

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本文引用的文献

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Health-related Quality of Life in Children with Autism Spectrum Disorder and Children with Down Syndrome.自闭症谱系障碍儿童和唐氏综合征儿童的健康相关生活质量
Mater Sociomed. 2020 Jun;32(2):93-98. doi: 10.5455/msm.2020.32.93-98.
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Factor Structure of the Aberrant Behavior Checklist in Individuals with Fragile X Syndrome: Clarifications and Future Guidance.脆性 X 综合征个体异常行为检查表的因子结构:澄清与未来指导
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自闭症人群中共病心理健康诊断的患病率:一项系统评价和荟萃分析。
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Quality of life of high-functioning children and youth with autism spectrum disorder and typically developing peers: Self- and proxy-reports.患有自闭症谱系障碍的高功能儿童和青少年与发育正常的同龄人相比的生活质量:自我报告和代理报告。
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Autism. 2015 Feb;19(2):158-67. doi: 10.1177/1362361313517053. Epub 2014 Jan 17.
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