Does the PedsQL reflect the real-time quality of life in autistic adolescents? A comparison with the experience sampling methodology

Hui Jen Shyu, Yu Wei Ryan Chen, Daphne Yih Ng, Anita Bundy, Mei Hui Tseng*, Reinie Cordier

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

1 Citation (Scopus)

Abstract

Background: 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. 

Objective: 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. 

Methods: 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. 

Results: 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. 

Conclusions: 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.

Original languageEnglish
Article number101690
Number of pages7
JournalDisability and Health Journal
Volume18
Issue number1
Early online date22 Aug 2024
DOIs
Publication statusPublished - 1 Jan 2025

Keywords

  • Autism spectrum disorder
  • Real-life experience
  • Real-time assessment
  • Retrospective measurement
  • Well-being

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