Evidence map›Paper›PMID 42317484›Full record

ArticleHealth care transitions2026

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

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 and 20 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Health care transitions, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

30 authors.

Jan Willem GorterCanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
Ronen RozenblumBrigham and Women's Hospital and Harvard Medical School, Boston, MA, United States.
Adrienne H KovacsEquilibria Psychological Health, Toronto, ON, Canada.
Khush H AmariaCBT Associates, A CloudMD Company, Toronto, ON, Canada.
Lehana ThabaneDepartment of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada.
Barb GaluppiCanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
Sonya StrohmCanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
Linda NguyenCanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
Alicia Via-Dufresne LeyCardiovascular Health Across the Lifespan Program, Research Institute of the McGill University Health Centre, Montreal, QC, Canada.
Hana AlazemUniversity of Ottawa, Ottawa, ON, Canada.
John AndersenDepartment of Pediatrics, University of Alberta, Edmonton, AB, Canada.
Rima AzarPsychology Department, Mount Allison University, Sackville, New Brunswick, Canada.
Kerry BoydDepartment of Psychiatry & Behavioral Neurosciences, McMaster University, Hamilton, ON, Canada.
Caitlin CassidyParkwood Institute, St Joseph's Health Care London, Parkwood Institute Research, London, Canada.
C J CurranHolland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
Claire Dawe-McCordCumming School of Medicine, University of Calgary, Calgary, AB, Canada.
Shelley DoucetFaculty of Nursing & Health Sciences, University of New Brunswick Saint John, Saint John, NB, Canada.
Anne FournierDépartement de Pédiatrie, Faculté de Médecine, Université de Montréal, Montreal, QC, Canada.
Michael FrostPatient and Family Partner, CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Project, Canada.
Dilshad Kassam-LallaniSpina Bifida and Spinal Cord Injury Program, Holland Bloorview Kids Rehabilitation Hospital, ON, Canada.
Alison LukePatient and Family Partner, CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Project, Canada.
Anna McCormickUniversity of Ottawa, Ottawa, ON, Canada.
JoAnne MoselPatient and Family Partner, CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Project, Canada.
Connie PuttermanPatient and Family Partner, CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Project, Canada.
Michael ShevellResearch Institute-McGill University Health Centre, Montreal, QC, Canada.
Kathy N SpeechleyDepartment of Epidemiology and Biostatistics, Western University, London, ON, Canada.
Donna ThomsonPatient and Family Partner, CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Project, Canada.
Lonnie ZwaigenbaumDepartment of Pediatrics, Faculty of Medicine & Dentistry, University of Alberta, Edmonton, AB, Canada.
Ariane MarelliMcGill Adult Unit for Congenital Heart Disease Excellence, McGill University Health Centre, Montreal, QC, Canada.
CHILD-BRIGHT READYorNotTM Brain-Based Disabilities Trial Study Group

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

AdolescentsDisabilitiesE-healthHealthcare transitionPatient engagementSelf-managementTransition readiness

Identifiers

PMID42317484
PMCPMC13273774

What Socratic holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.