Evaluation of the Transitional and Lifelong Care Program

Launched by WESTERN UNIVERSITY, CANADA · May 5, 2023

Keywords

ClinConnect Summary

**Trial Summary: Evaluation of the Transitional and Lifelong Care Program**

This clinical trial is studying a program called the Transitional and Lifelong Care (TLC) clinic, which helps adults with disabilities that began in childhood, such as cerebral palsy, spina bifida, and other developmental disabilities. Many of these individuals face challenges when moving from pediatric (children's) healthcare to adult healthcare, often experiencing gaps in their care. The TLC program aims to provide coordinated support for their mental, social, and physical health needs, ensuring they receive the comprehensive care they deserve. The goal of this study is to evaluate how effective the TLC program is in improving access to health services and reducing the barriers that these adults face.

To participate in the trial, individuals must be over 21 years old, have a childhood-onset disability, and have lived in Ontario between 2015 and 2020. Each participant will be paired with a primary caregiver, who can be a family member or someone else who helps with their care. If the person with the disability is independent, a spouse or family member can still join the study. Participants can expect to share their experiences and provide valuable feedback about the TLC program, which has already helped over 750 individuals since its start. This research could lead to better healthcare for many more adults with similar conditions across Canada.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Each participant dyad will consist of one person, of either sex and gender, who is over the age of 21 years with a childhood-onset disability, and the primary caregiver (based on contact hours) or support person, of either sex and gender, involved in their care. In cases where the patient participant is independent with care, a spouse or family member may still participate in the caregiver portion of the study.
• • 2. Patient participants will have continuously resided in Ontario during the years of 2015 to 2020 to facilitate full data retrieval from the administrative dataset.
• • 3. Healthcare providers, of any discipline, who provide care to adults with childhood-onset conditions in the TLC program.
• Exclusion Criteria:
• • Patient participants will be ineligible if they are in a phase of deterioration associated with a progressive health condition identified either personally or by the caregiver participant.