Shyu Hui-Jen, Ryan Chen Yu-Wei, Yih Ng Daphne, Bundy Anita, Tseng Mei-Hui, Cordier Reinie
School of Occupational Therapy, College of Medicine, National Taiwan University, Taiwan.
Sydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, NSW, Australia.
Disabil Health J. 2025 Jan;18(1):101690. doi: 10.1016/j.dhjo.2024.101690. Epub 2024 Aug 22.
The PedsQL is widely used to retrospectively evaluate quality of life (QoL) in autistic adolescents. However, concerns have arisen regarding its ability to reflect real-time QoL, considering their challenges in recollecting past experiences.
We examined the overall and social QoLs of autistic adolescents compared to neurotypical peers using the PedsQL and the experience sampling method (ESM), an ecological momentary assessment of QoL in real-time. Additionally, we explored the relationship between these measures in each group.
A total of 175 participants, including 117 autistic and 58 neurotypical adolescents aged 10-16, completed the PedsQL and an ESM protocol with a mobile device to record their real-time experiences seven times a day for seven days. We performed multiple linear regression and multilevel analyses to compare QoLs between groups and the association between the two measures.
Autistic adolescents scored significantly lower than neurotypical peers on PedsQL overall and social QoL but not on the real-time experiences collected with ESM. Among neurotypical adolescents, we found significant associations between the Social Functioning score of the PedsQL and various aspects of real-time social experiences recorded with ESM. For autistic adolescents, only the real-time experience of 'loneliness' during social engagement was associated with Social Functioning on the PedsQL.
The retrospective PedsQL does not entirely capture the real-time QoL via ESM. However, relying solely on ESM may overlook situations where participants opt out or could not complete surveys. Thus, using both retrospective and real-time assessments to examine QoL among autistic adolescents is recommended.
儿童生活质量量表（PedsQL）被广泛用于回顾性评估自闭症青少年的生活质量（QoL）。然而，考虑到他们在回忆过去经历方面存在困难，人们对其反映实时生活质量的能力产生了担忧。
我们使用儿童生活质量量表（PedsQL）和经验取样法（ESM，一种对生活质量进行实时生态瞬时评估的方法），比较了自闭症青少年与神经典型同龄人在总体和社会生活质量方面的情况。此外，我们还探讨了每组中这些测量方法之间的关系。
共有175名参与者，包括117名年龄在10至16岁之间的自闭症青少年和58名神经典型青少年，他们完成了儿童生活质量量表（PedsQL）以及一项经验取样法（ESM）方案，该方案使用移动设备记录他们连续七天每天七次的实时经历。我们进行了多元线性回归和多层次分析，以比较两组之间的生活质量以及这两种测量方法之间的关联。
在儿童生活质量量表（PedsQL）的总体和社会生活质量方面，自闭症青少年的得分显著低于神经典型同龄人，但在经验取样法（ESM）收集的实时经历方面并非如此。在神经典型青少年中，我们发现儿童生活质量量表（PedsQL）的社会功能得分与经验取样法（ESM）记录的实时社会经历的各个方面之间存在显著关联。对于自闭症青少年，只有社交活动中“孤独”的实时体验与儿童生活质量量表（PedsQL）上的社会功能相关。
回顾性的儿童生活质量量表（PedsQL）并不能完全通过经验取样法（ESM）捕捉实时生活质量。然而，仅依靠经验取样法（ESM）可能会忽略参与者选择退出或无法完成调查的情况。因此，建议同时使用回顾性和实时评估来检查自闭症青少年的生活质量。
