Actively Recruiting
Evaluating a Model of Transitional and Lifelong Care for Adults With Childhood-Onset Disabilities
Led by Western University, Canada · Updated on 2026-02-27
410
Participants Needed
1
Research Sites
47 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
This research focuses on adults and youth with childhood-onset disabilities, mainly brain-based neurodevelopmental conditions like cerebral palsy, spina bifida, and developmental disability. It evaluates the Transitional and Lifelong Care (TLC) program, which was developed to address healthcare gaps faced by this population when moving from pediatric to adult healthcare. The study aims to assess the TLC program's impact in reducing barriers and improving coordinated care for adults with neurodiverse conditions. The TLC program offers specialized, multidisciplinary care involving physiatrists, nurse practitioners, social workers, physiotherapists, occupational therapists, speech language pathologists, registered dietitians, and rehabilitation therapists. Participants include those receiving care through the TLC clinic and those not in the program, as well as their caregivers and healthcare providers. The study compares these groups to evaluate the TLC model's effectiveness. Participants will be involved in evaluating patient satisfaction, health-related quality of life, caregiver burden, perceived support from healthcare providers, and an economic analysis over one to two years. The study collects data from patients, caregivers, and healthcare providers to measure these outcomes. The trial is observational, with participants followed to assess the TLC program's overall impact on care coordination and health outcomes for adults with childhood-onset disabilities.
CONDITIONS
Brief Title
Evaluation of the Transitional and Lifelong Care Program
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Participants must be 21 years or older with a childhood-onset disability such as cerebral palsy, spina bifida, or developmental disability
- Participants must have continuously lived in Ontario from 2015 to 2020
- Primary caregivers or support persons involved in the care of these adults may participate
- Healthcare providers of any discipline who care for adults with childhood-onset conditions in the TLC program may participate
You will not qualify if you...
- Patients experiencing a phase of deterioration linked to a progressive health condition are not eligible
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or virtual) for eligibility assessment
Duration - Up to 2 years
Participants who are patients of the TLC program, their caregivers, and healthcare providers are observed to evaluate the model of transitional and lifelong care.
Periodic assessments up to Year 2
Trial Site Locations
Total: 1 location
1
Parkwood Institute
London, Ontario, Canada
Actively Recruiting
Research Team
L
Laura K Brunton, PhD
J
Josh Wiener, MSc
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
5
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