Evaluation of a care program for adults with childhood-onset disabilities
Evaluating a Model of Transitional and Lifelong Care for Adults With Childhood-Onset Disabilities
This study is testing a new care program for adults who had disabilities from childhood to see if it helps them get better healthcare and improve their overall health.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 410 (estimated) |
| Ages | 21 Years and up |
| Sex | All |
| Sponsor | Western University, Canada Academic / other |
| Locations | 1 site (London, Ontario) |
| Trial ID | NCT05849285 on ClinicalTrials.gov |
What this trial studies
This observational study evaluates the Transitional and Lifelong Care (TLC) program designed for youth and adults with childhood-onset disabilities, primarily focusing on those with cerebral palsy, spina bifida, and developmental disabilities. The TLC program aims to address health inequities faced by this population during their transition from pediatric to adult healthcare services by providing coordinated management of their mental, social, and physical health needs. The study will assess the effectiveness of the TLC model in reducing barriers to care and improving health outcomes for these individuals.
Who should consider this trial
Good fit: Ideal candidates include adults over 21 years old with a childhood-onset disability and their primary caregivers.
Not a fit: Patients experiencing deterioration due to a progressive health condition may not benefit from this study.
Why it matters
Potential benefit: If successful, this program could significantly improve the quality of life and health outcomes for adults with childhood-onset disabilities.
How similar studies have performed: While this approach is innovative in its focus on transitional care for this specific population, similar models have shown promise in improving health outcomes in other settings.
Eligibility criteria
Show full inclusion / exclusion 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.
Where this trial is running
London, Ontario
- Parkwood Institute — London, Ontario, Canada (Recruiting)
Study contacts
- Principal investigator: Laura K Brunton, PhD — Western University
- Study coordinator: Laura K Brunton, PhD
- Email: lbrunto3@uwo.ca
- Phone: 15196612111
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.