NCT05849285

Evaluation of the Transitional and Lifelong Care Program

Evaluating a Model of Transitional and Lifelong Care for Adults With Childhood-Onset Disabilities

• Status: Recruiting
• Phase: —
• Study type: Observational
• Enrollment: 410 (estimated)
• Sponsor: Western University, Canada · Academic / Other
• Sex: All
• Age: 21 Years
• Healthy volunteers: —

Summary

The population cared for in the Transitional and Lifelong Care (TLC) clinic is youth and adults with childhood-onset disability, of which the large majority are adults with brain-based, neurodevelopmental conditions such as cerebral palsy, spina bifida and developmental disability. The TLC program was created to address the health inequities that have long existed for this population because of the gaps in care they experience once they transition from pediatric healthcare services to the adult healthcare sector. The TLC program offers coordinated and comprehensive management of co-occurring mental, social and physical health conditions for this group of adults with neurodiverse conditions. The proposed study will provide much needed evaluation of the TLC model as an intervention to provide transitional and lifelong care that reduces the barriers experienced because of the undefined clinic path - potentially more appropriately referred to as a "cliff" by a Freeman et al., (2015) - for these individuals. With appropriate evidence of effectiveness, scaling of the TLC program to other Ontario Health regions and more widely across Canada would improve access healthcare providers who are knowledgeable and competent in the management of physical and mental health conditions for adults with neurodiverse conditions as well as service integration and coordination between social and health sectors. The TLC clinic was co-designed with adults with neurodiverse conditions and health care providers in 2014 and represents a significant and sustainable change in the way healthcare has been delivered for this population in the Ontario Health West region over the last 7 years. More than 750 people have accessed coordinated and comprehensive care from Physiatrists, a Nurse Practitioner, Social Worker, Physiotherapist, Occupational Therapist, Speech Language Pathologist, Registered Dietitian and Rehabilitation Therapist in the TLC program since it began, documenting the effectiveness of this care has the power to re-shape care received for adults with neurodiverse conditions that onset in childhood in Canada.

Conditions

• Cerebral Palsy
• Spina Bifida
• Developmental Disability

Interventions

Type	Name	Description
OTHER	TLC Clinic	Patients of the TLC clinic - receive coordinated multidisciplinary and specialized care from a team

Timeline

• Start date: 2024-01-03
• Primary completion: 2026-12-31
• Completion: 2027-12-01
• First posted: 2023-05-08
• Last updated: 2026-02-27

Locations

1 site across 1 country: Canada