Improving usual care after sudden death in the young with focus on inherited cardiac diseases: A community-based intervention study

Introduction: Inherited cardiac diseases play an important role in sudden death (SD) in the young. Autopsy and cardiogenetic evaluation of relatives of young SD victims indentifies relatives at risk. We studied the usual care after SD in the young aimed at identifying inherited cardiac disease as the cause of death, and assessed efficacy of two interventions to improve this usual care. Methods: We conducted a community-based intervention study to increase autopsy rates of young SD victims (age 1 to 44 years) and referral of their relatives to cardiogenetic clinics. The study regions comprised 2 843 901 individuals. In the Amsterdam study region, a 24/7 central telephone number and a website were available to inform general practitioners (GPs) and coroners. In the Utrecht study region, they were informed by a letter and educational meetings. In two control regions usual care was monitored. The primary outcomes were the autopsy rates and the proportion of first-degree relatives attending a cardiogenetics department. Results: Autopsy was performed in 169 of the 390 registered SD cases (43.3%), and was higher in cases in no versus a relevant medical history (59.7% vs. 37.3%;