Evaluating Coordinated Care in the Transitional and Lifelong Care Program for Adults with Childhood-Onset Disabilities

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 programs 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 models 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 programs overall impact on care coordination and health outcomes for adults with childhood-onset disabilities.

Evaluation of the Transitional and Lifelong Care Program