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Publications

Journal Article Epublish

PubMed: 42317484 DOI: 10.1016/j.hctj.2026.100144

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

Health Care Transit 4:100144

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

Affiliations

  • CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
  • Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
  • Department of Rehabilitation, Physical Therapy Science and Sports, UMC Utrecht Brain Center, University Medical Center Utrecht, Utrecht, the Netherlands.
  • Centre of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht and De Hoogstraat Rehabilitation, Utrecht, the Netherlands.
  • Brigham and Women's Hospital and Harvard Medical School, Boston, MA, United States.
  • Equilibria Psychological Health, Toronto, ON, Canada.
  • CBT Associates, A CloudMD Company, Toronto, ON, Canada.
  • Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada.
  • Biostatistics Unit, St. Joseph's Healthcare Hamilton, Hamilton, ON, Canada.
  • Cardiovascular Health Across the Lifespan Program, Research Institute of the McGill University Health Centre, Montreal, QC, Canada.
  • University of Ottawa, Ottawa, ON, Canada.
  • Division of Developmental Medicine and Rehabilitation, CHEO, Ottawa, ON, Canada.
  • Department of Pediatrics, University of Alberta, Edmonton, AB, Canada.
  • Psychology Department, Mount Allison University, Sackville, New Brunswick, Canada.
  • Department of Psychiatry & Behavioral Neurosciences, McMaster University, Hamilton, ON, Canada.
  • Parkwood Institute, St Joseph's Health Care London, Parkwood Institute Research, London, Canada.
  • Department of Physical Medicine and Rehabilitation, Western University, London, Canada.
  • Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
  • Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
  • Patient and Family Partner, CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Project, Canada.
  • Faculty of Nursing & Health Sciences, University of New Brunswick Saint John, Saint John, NB, Canada.
  • Centre for Research in Integrated Care, University of New Brunswick Saint John, Saint John, NB, Canada.
  • Département de Pédiatrie, Faculté de Médecine, Université de Montréal, Montreal, QC, Canada.
  • Département de Pédiatrie, Centre Hospitalier Universitaire Sainte-Justine, Montreal, QC, Canada.
  • Spina Bifida and Spinal Cord Injury Program, Holland Bloorview Kids Rehabilitation Hospital, ON, Canada.
  • CHEO Research Institute, CHEO, Ottawa, Canada.
  • Research Institute-McGill University Health Centre, Montreal, QC, Canada.
  • Departments of Pediatrics and Neurology/Neurosurgery, McGill University, Montreal, QC, Canada.
  • Department of Epidemiology and Biostatistics, Western University, London, ON, Canada.
  • Child Health Research Institute, Lawson Health Research Institute, London, ON, Canada.
  • Department of Paediatrics, Western University, London, ON, Canada.
  • Department of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.
  • McGill Adult Unit for Congenital Heart Disease Excellence, McGill University Health Centre, Montreal, QC, Canada.

Abstract

BACKGROUND

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.

METHODS

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.

RESULTS

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.

CONCLUSION

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.

MeSH

Pilots, Brain, Health Transition