JMIR Publications

ABSTRACT

Background:

Research priorities for autistic people include developing effective interventions for the numerous challenges affecting their daily living, e.g., mental health problems, sleep difficulties, and social well-being. However, clinical research progress is limited by a lack of validated objective measures that represent target outcomes for improvement. Digital technologies, including wearable devices and smartphone applications, provide opportunities to develop novel measures that may reflect everyday experience and complement key clinical assessments. However, little is known about the acceptability and feasibility of implementing digital data collection in this population.

Objective:

The first LEAP study participants were enrolled in September 2021 (in-person component) and March 2022 (RM component). To date, 190 participants have taken part in the digitally augmented ADOS-2 component, and 86 participants have been enrolled for the remote measurement protocol. Recruitment is now complete with some RM data collection ongoing until August 2025. Data analysis has commenced, including qualitative framework analysis of feedback interview data coproduced with autism community members, exploration of acceptability and feasibility metrics, pipeline development for ADOS-2 speech analysis and RM sleep measures.

Methods:

Eligible autistic and non-autistic participants in the AIMS Longitudinal European Autism Project (LEAP) were invited to participate in a digitally augmented in-person Autism Diagnostic Observation Schedule-2 (ADOS-2) and a 28-day remote measurement (RM) protocol involving wearing a Fitbit device, downloading a passive smartphone data collection app, and using two active reporting apps.

Results:

The first LEAP study participants were enrolled in September 2021 (in-person component) and March 2022 (RM component). To date, 190 participants have taken part in the digitally augmented ADOS-2 component, and 86 participants have been enrolled for the remote measurement protocol. Recruitment is now complete with some RM data collection ongoing until August 2025. Data analysis has commenced, including qualitative framework analysis of feedback interview data coproduced with autism community members, exploration of acceptability and feasibility metrics, pipeline development for ADOS-2 speech analysis and RM sleep measures.

Conclusions:

This study lays important groundwork in understanding the acceptability and feasibility of in-person and remotely implemented digital measurement procedures to capture meaningful outcomes in domains important to improving everyday life for autistic people.