Transition and Transfer of Congenital Heart Disease Care From Pediatrics to Adulthood

Adults with congenital heart disease (CHD) are a growing patient population in need of ongoing specialized care. Lapses in appropriate transition and transfer processes from childhood to adulthood in CHD care can lead to loss in follow up, late detection of new or evolving cardiac complications and negative patient outcomes. Therefore, it is vital that a robust transition and transfer process is established. Through a retrospective study completed recently at the University of Ottawa Heart Institute (UOHI) we have shown that the average wait time to be assessed by an adult congenital heart disease (ACHD) specialist is about 10 months and within this wait period 1 in 8 ACHD patients have a decline in their health. The goal of this study is to specifically reduce negative patient outcomes during this wait period. We aim to achieve this by (i) establishing a program to ensure early detection of patients at risk of deterioration and (ii) providing additional support to these patients. The program is designed to have a multipronged approach including tools to disseminate concise patient specific information among care providers, maintain open line of communication with patients on the waitlist and promote patient education. We plan to improve our transition care by creating a multi-pronged transfer program specifically for patients on the wait list composed of a nurse check in, creation of a diagnosis summary, education day and combined pediatric cardiology/ACHD handover videocall (described below). This program is planned as part of our care pathway and will be offered to all patients on the wait list. We intend to document the efficacy of this transition program to improve transition care by assessing patient reported outcomes and clinical outcomes of the patients who consent to complete additional questionnaires. The multi-pronged program will include the following: 1. ACHD nurse check-in (patient check-in via phone call or zoom from the ACHD nurse within 1 month of receiving referral) - allows early establishment of clinical relationship with the patient, screen for risk factors for deterioration and provision of ACHD clinic contact information to enable open line of communication. Patients considered at risk for deterioration on the wait-list based on this check-in conversation will be triaged for a more urgent first consult at the ACHD clinic. 2. Quick glance diagnosis summary (Electronic on Epic MyChart) - will be created during nurse check in and will be used to disseminate concise patient specific information among health care workers and acts as a reference for the patients. 3. Organization of an ACHD patient education day (half day hybrid event every 6 months) - allows formal introduction to the ACHD team, provides information session on ACHD care and lowers patients' threshold to inform the ACHD team in case of clinical deterioration. 4. Combined pediatric cardiology and ACHD handover video call at time of transfer - allows effective and efficient handover of patient care from pediatric to adult care and facilitates the coordination of care during the transfer period. These four components of the program work together to provide tools to disseminate concise patient specific information among care providers, maintain open line of communication with patients on the waitlist and promote patient education.

NCT Number	NCT07585175
Lead Sponsor	Ottawa Heart Institute Research Corporation Collaborators: University of Ottawa Heart Institute, Canada
Conditions	Congenital Heart Disease (CHD)
Enrollment	200 participants
Start Date	2024-06-01
Primary Completion	2026-12-31 (estimated)
Study Completion	2026-12-31 (estimated)
Updated on ClinicalTrials.gov	2026-07-02