Grant: Knowledge Translation Supplement - PA: Health Services and Policy Research

We have identified a very high incidence of congenital long QT syndrome (LQTS) in a Northern community. LQTS is a genetic condition, which causes dangerous abnormalities in the hearts rhythm or arrhythmias. Once thought to be rare, we now know LQTS to be a common cause of sudden cardiac death in otherwise healthy people. LQTS is also associated with sudden infant death syndrome. In this isolated community, there are at least 50 individuals affected by LQTS, making this one the largest LQTS cohorts in the world. With the potential for dangerous arrhythmias, LQTS has an impact on several aspects of health care and presents a unique burden to the community. We are requesting funding to work with the community to establish a comprehensive, community-wide, community-driven approach to living with LQTS. This includes a campaign of education and support to establish a local community LQTS resource team and to raise the level of knowledge surrounding LQTS. The initial stage will include determining what the community wants and needs in terms of information and planning. We will then bring our team of experts to help train local individuals to become a community-based LQTS resource team. Once trained we will continue to support them as they train health care providers and first responders regarding issues of particular significance to people living with LQTS. These issues include the need for widespread community CPR and automated external defibrillator training in case of sudden cardiac death, awareness of a large number of contraindicated prescription drugs, and the elevated risk the condition puts women after childbirth. Our goal in working with this community is to create an internal support system that will improve compliance with medication and minimize adverse outcomes due to lack of information or access to resources. We will work to develop clear community plans to respond to cardiac arrest and promote healthy active living with LQTS.