An e-health transition intervention for youth with brain-based disabilities: Pilot and feasibility results from a...

Youth with brain-based disabilities (BBD) need tailored support when preparing for adult healthcare. We originally designed a full randomized controlled trial (RCT) to test whether the MyREADY Transition™ BBD App improved transition readiness among youth aged 15-17 years with autism spectrum disorder, cerebral palsy, epilepsy, fetal alcohol spectrum disorder, or spina bifida. Due to slow recruitment, the full RCT was halted and pivoted to a stand-alone pilot and feasibility trial.

This mixed method, patient-oriented pilot RCT (2019-2022, Canada) evaluated process, resource, management, and scientific feasibility, along with engagement with the App. Scientific feasibility focused on self-management outcomes (TRAQ and Transition-Q) among 43 youth (mean age 15.9 ± 0.8; 19 intervention, 24 control). Interviews and surveys provided additional perspectives on feasibility and user experience.

Recruitment achieved only 43 of the planned 264 participants, and App engagement was modest. Almost all intervention participants logged into the App at least once, but on average completed less than one third of the curriculum. Qualitative findings suggested the App's content was relevant and useful. Participants, caregivers, and healthcare providers emphasized the need for tailored, collaborative approaches to transition preparation.

Challenges included slow recruitment and limited sustained use of an e health intervention among youth with BBD. Despite the pivot, the trial generated pragmatic insights for future transition research. Youth and parent recommendations underscored the importance of customizable content and strategies that enhance motivation and engagement. Additional pilot work is needed to refine and optimize digital transition supports.