Establishing a transfer program in adult congenital heart disease (ACHD) to address risks of health decline

May 24, 2025 from 10:55am EST to 11:25am EST

More than 90% of children born with a congenital heart disease (CHD) grow up to adulthood. This patient population requires lifelong follow-up in an ACHD clinic. In a recent retrospective study completed at our centre, one in eight patients had a decline in their health while waiting for an ACHD consultation. In addition, patients with moderate or severe CHD lesions were at greater risk for decline compared to those with simple CHD lesions.

The ACHD clinic at the University of Ottawa Heart Institute (UOHI) developed a multipronged transfer program to aid in minimizing health decline while on the waitlist.

Firstly, a nurse led virtual visit is scheduled within one month of receiving a new referral to the ACHD clinic. These clinic appointments aim to provide patient with education on their specific heart defect, awareness of potential red flag symptoms, and lifestyle recommendations. This enables nursing staff to triage and prioritize consults, and facilitate referrals as needed.

Secondly, a concise personalized congenital history document is created for each referral. This is shared with the patient at the time of their nursing visit. This summary includes pertinent cardiac health information, alarm symptoms and clinic contact information.

To date, 51 patients have been included, five of which were identified as high risk for health decline and were triaged for an urgent visit.

These two patient interventions aid in early establishment of therapeutic relationships, detection of those at risk of declining, and dissemination of concise and patient specific information to patients and healthcare providers. 

Speakers / Panelists

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    Carolynne Brousseau-Whaley
    RN, BScN, MScN

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    Joanne Morin
    NP