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 language | English |
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Article number | 101690 |
Number of pages | 7 |
Journal | Disability and Health Journal |
Volume | 18 |
Issue number | 1 |
Early online date | 22 Aug 2024 |
DOIs | |
Publication status | Published - 1 Jan 2025 |
Keywords
- Autism spectrum disorder
- Real-life experience
- Real-time assessment
- Retrospective measurement
- Well-being