Authors
Jan Willem Gorter, Ronen Rozenblum, Adrienne H Kovacs, Khush H Amaria, Lehana Thabane, Barb Galuppi, Sonya Strohm, Linda Nguyen, Alicia Via-Dufresne Ley, Hana Alazem, John Andersen, Rima Azar, Kerry Boyd, Caitlin Cassidy, C J Curran, Claire Dawe-McCord, Shelley Doucet, Anne Fournier, Michael Frost, Dilshad Kassam-Lallani, Alison Luke, Anna McCormick, JoAnne Mosel, Connie Putterman, Michael Shevell, Kathy N Speechley, Donna Thomson, Lonnie Zwaigenbaum, Ariane Marelli, CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Trial Study Group
Published in
Health care transitions. Volume 4. Pages 100144. Epub Jun 10, 2026.
Abstract
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.
PMID:
42317484
Bibliographic data and abstract were imported from PubMed on 19 Jun 2026.
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