Grant: Catalyst Grant: Quadruple Aim and Equity

When a person's heart stops suddenly, most people die. The cause is important to identify, because some heart problems can be inherited from parents to children and first degree relatives (FDR) may be at-risk. There are special inherited arrhythmia clinics (IACs) with heart doctors to test these FDRs to find out if they have the same disease as the person who died ("cascade screening"). In many cases, these FDR can be treated and deaths prevented. In Ontario, the coroner tells some of the FDR about their risk for dying suddenly and need for cascade screening, yet there are no standard rules for how to do this. FDRs then need to ask their family doctors for a referral, however we don't know if family doctors know about these IACs and how to refer to them. Also lack of IACs in rural and northern areas, make it hard for FDR who live there to receive care. This project aims to test a new and standardized way of informing FDR about their need for cascade screening, with a case-manager, who will call each FDR, explain to them why it's important for them to get cascade screening and give them detailed information about where to go. With the FDR's permission, the case-manager will also send a letter to their family doctor telling him/her about where to send the FDR for cascade screening. Three months later the case-manager will call to see if the FDR went for cascade screening and if not, why not. To test if this new standardized process works, we will compare the number of FDR that go for cascade screening before and after this project starts. We will also interview some of these FDR to find out the reasons why they did or didn't go for cascade screening, to make sure that we understand all of reasons involved, and any challenges they encountered. If we find that the case-manager is effective at encouraging FDR to go for cascade screening, we will use this knowledge to encourage other Provinces across Canada to use this approach to help future FDR of SCD victims.