Improving transition of congenital heart disease care from pediatric to adult services
Transition and Transfer of Congenital Heart Disease Care From Pediatrics to Adulthood.
This program will try a multi-step transfer process to reduce health declines in people with congenital heart disease who are waiting to see an adult specialist.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 200 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Ottawa Heart Institute Research Corporation Academic / other |
| Locations | 1 site (Ottawa, Ontario) |
| Trial ID | NCT07585175 on ClinicalTrials.gov |
What this trial studies
This prospective quality-improvement program will offer a structured, multi-pronged transfer pathway to all new ACHD patients on the adult wait list at the University of Ottawa Heart Institute. Patients are enrolled in staggered groups so the first 50 receive an ACHD nurse check-in and a diagnosis summary, the next 50 also receive an ACHD education day, and later patients additionally receive a combined pediatric-ACHD handover video call. Clinical outcomes for all participants will be tracked by chart review and consenting patients will complete voluntary patient-reported outcome surveys conducted by phone or Zoom. The program is designed to detect early deterioration and provide additional support during the typical wait for adult ACHD assessment.
Who should consider this trial
Good fit: New patients with congenital heart disease who have been referred from pediatric services or the community and are on the adult ACHD wait list are ideal candidates.
Not a fit: Patients already established in continuous adult ACHD follow-up or those who require immediate in-person cardiology care are unlikely to benefit from this waitlist-focused program.
Why it matters
Potential benefit: If successful, the program could reduce gaps in care and lower the risk of clinical deterioration while patients wait for adult congenital heart specialist follow-up.
How similar studies have performed: Previous retrospective work identified long waits and health declines during transfer, and while some transition programs have reduced loss to follow-up in other settings, prospective evidence specific to structured ACHD transfer programs is limited.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * All new patients with congenital heart disease referred from the pediatric hospital and the community Exclusion Criteria: * None
Where this trial is running
Ottawa, Ontario
- University of Ottawa Heart Institute — Ottawa, Ontario, Canada (Recruiting)
Study contacts
- Study coordinator: Joanne N Joseph, MD
- Email: joajoseph@ottawaheart.ca
- Phone: 613-261-9316
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.