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

NCT07585175 | Recruiting

• 1 other identifier: QI - 212
• Study Type: observational
• Target: 200
• Locations: 1 country
• Sites: 1

Brief Summary

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. 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. 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. 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. 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.

Conditions

Congenital Heart Disease (CHD)

Keywords

Adult Congenital Heart Disease; Transfer of care; Transition of care

Outcome Measures

Primary Outcomes (4)

• Hospitalizations

  Number of unexpected hospitalizations related to patient's cardiac condition during the wait period.

  2 years

• Doctor visits related to cardiac conditions

  Number of family physician visits related to patient's cardiac condition during the wait period.

  2 years

• Unexpected urgent intervention

  Number of urgent intervention related to the cardiac conditions during the wait period.

  2 years

• Emergency Room Visits

  Number of non-planned emergency department visits related to patient's cardiac condition during the wait period.

  2 years

Secondary Outcomes (3)

• Change in Patient Health Questionnaire (PHQ9) score for depression

  2 years

• Change in General Anxiety Disorder (GAD-7) score for anxiety

  2 years

• Change in Satisfaction With Life Survey (SWLS) score

  2 years

Study Arms (1)

Patients with congenital heart disease referred to the University of Ottawa Heart Institute

We aim to include all the patients referred to the UOHI ACHD program in our multipronged transfer program. This will include patients from the pediatric hospital (CHEO) and community referrals.

Other: Multi-pronged transfer program

Interventions

Multi-pronged transfer program OTHER

There are 4 components of the transfer program. Groups of patients will be staggered so that the first 50 patients receive 1+2, next 50 patients receive 1+2+3 and the rest of the patients receive 1+2+3+4 as listed below: 1. ACHD nurse check-in 2. Quick glance diagnosis summary 3. ACHD patient education day 4. Combined pediatric cardiology and ACHD handover video call at time of transfer

Patients with congenital heart disease referred to the University of Ottawa Heart Institute

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Patients with congenital heart disease (CHD) referred from the pediatric hospital and the community to the University of Ottawa Heart Institute.

You may qualify if:

• All new patients with congenital heart disease referred from the pediatric hospital and the community

You may not qualify if:

• None

Sponsors & Collaborators

• Ottawa Heart Institute Research Corporation: lead
• University of Ottawa Heart Institute, Canada: collaborator

Study Sites (1)

University of Ottawa Heart Institute

Ottawa, Ontario, K1Y4W7, Canada

RECRUITING

MeSH Terms

Conditions

Heart Defects, Congenital

Condition Hierarchy (Ancestors)

Cardiovascular Abnormalities; Cardiovascular Diseases; Heart Diseases; Congenital Abnormalities; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Central Study Contacts

Joanne N Joseph, MD

CONTACT

613-261-9316; joajoseph@ottawaheart.ca

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 2 Years
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: October 24, 2024
• First Posted: May 13, 2026
• Study Start: June 1, 2024
• Primary Completion (Estimated): May 31, 2026
• Study Completion (Estimated): May 31, 2026
• Last Updated: May 13, 2026

Record last verified: 2026-04

Locations

CA (1)