All in the family – How doctors and partners are tackling the challenges of inherited heart conditions

Many of us have heard troubling stories of a young person having a cardiac arrest while playing hockey or football due to a genetic disposition. In fact, about 80,000 people in BC are at risk of having an inherited heart condition.

The work to formalize a solution began in 2012 when Dr Laura Arbour, a medical geneticist, obtained funding through Specialist Services Committee's Quality and Innovation initiative to establish a BC Inherited Arrythmia Program (BCIAP), the first of its kind in BC. The program integrates genetics and cardiology expertise into one disciplinary service model. Within the first 32 months of initiation, over 1,300 patient referrals were received – 26% greater than the program’s original projection and more than 350% greater than the annual patient volume seen before the BCIAP was established.

Cardiac Services BC with the help of the Joint Collaborative Committees – a partnership of Doctors of BC and the BC government – are now working with physicians to address the challenge through a Health System Redesign (HSR) project. Led by Dr Andrew Krahn, the project is in the development phase of a provincial Inherited Cardiovascular Conditions (ICC) and Sudden Cardiac Death Management (SCD) program that will give patients with genetic heart issues the right care, at the right time, and in the right place. The program will also detect family members who may have issues – resulting in the ability to proactively treat previously undetected heart issues.

Once developed, it is expected that the program will have a central intake process with hubs in various locations around the province. The hubs will have a cardiologist and medical geneticist presence with genetic counsellors and operational support. Given BC’s geography, virtual care will likely be a key component. “Personally, I’d like to see 50% of the care as virtual care. I think the next generation of patients, as they are coming out of COVID, are going to demand more virtual care.” said Dr Krahn.

Kirsten Bartels, the provincial ICC/SCD project lead, says, “We had a good sense when we started what physicians needed, but once we put our plans in place, we went back to them and asked for further input. Physicians have been very open to coming to the table and helping us.”

Part of the development includes a cardiovascular genetics registry that will support research to further advance detection, prevention, and treatment. Currently, the first step to genetic testing is a spit test that is simple to administer at home and mail back to the lab. This simple process helps to capture and build vital data.

There is much to consider as this work progresses, including educating family physicians in detection methods, defining standardized care paths, ethics around collecting genetic data, and determining where to establish hubs for optimum results. Thanks to this collaboration with Cardiac Services BC, the JCCs, and other stakeholders, BC can expect to see a much more robust system to detect and treat inherited heart conditions in the next three to five years.