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

The PedsQL is a widely used tool for assessing the quality of life (QoL) among autistic adolescents. However, some individuals question how effectively it captures their current experiences, particularly since memory can sometimes be a bit tricky for them. To gain a clearer understanding, we compared the overall and social QoLs of autistic adolescents with their neurotypical peers using both the PedsQL and an engaging method called the experience sampling method (ESM). This innovative approach allows us to check in on real-time QoL by gathering experiences throughout the day.

We had a group of 175 participants, including 117 autistic and 58 neurotypical adolescents aged 10–16. Every participant filled out the PedsQL and used a mobile device, equipped with the PIEL Survey App, to report their experiences seven times daily throughout the week.

Our findings revealed that autistic adolescents had lower scores on the PedsQL for both overall and social QoL compared to their neurotypical friends. However, when we looked at real-time experiences recorded through ESM, they didn’t score any lower! For the neurotypical group, we observed strong connections between their PedsQL Social Functioning scores and their real-time social experiences. Interestingly, for autistic adolescents, the only real-time experience that linked to the PedsQL Social Functioning was the feeling of 'loneliness.'

The PIEL Survey App on a smartphone shows a question about enjoyment with a slider ranging from "not at all" to "very much."

In conclusion, while the PedsQL provides us with valuable insights, it doesn't fully capture the real-time QoL as observed through ESM. On the flip side, relying solely on ESM might overlook moments when participants are unable to fill out surveys. Therefore, we recommend a combination of both retrospective and real-time assessments to achieve the best understanding of QoL in autistic adolescents!

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Shyu, H.J., Chen, Y.W.R., Ng, D. Y., Bundy, A., Tseng, M.H., & Cordier, R. (2024). Does the PedsQL reflect the real-time quality of life in autistic adolescents? A comparison with the experience sampling methodology. Disability and Health Journal. https://doi.org/10.1016/j.dhjo.2024.101690