Sudden cardiac death of the young in Michigan: development and implementation of a novel mortality review system

Abstract

Advances in screening, detection and treatment make Sudden Cardiac Death of the Young (SCDY) a potentially preventable condition. Since hereditary causes account for many deaths, identification of an affected individual has implications for immediate relatives; who should receive targeted screening with the aim of preventing SCDY. To develop a mortality review process for SCDY and to identify potential unmet needs for family-based, medical system and public health interventions. The Michigan Department of Community Health and Michigan State University developed a system for investigating SCDY. Review of medical records and next-of-kin (NOK) interviews were conducted. A de-identified summary of each case was presented to an expert panel. The panel identified factors that contributed to the death and possible actions to prevent future deaths. If the case was deemed to have a likely heritable cause, NOK were notified of a possible increased risk and need for evaluation of immediate family members. Twenty-three deaths aged 1-39 years between 2006 and 2008, were selected for review. Sixteen NOK were interviewed. Several primary and secondary prevention measures were identified, including enhanced pre-participation sports screening; provider education; public awareness of risk factors, symptoms, emergency response training for coaches and the general public; and creation and dissemination of emergency response and medical examiner protocols. Seventeen NOK were notified of the potential heritable cause. Investigation of these deaths has led to identification of individual, family, public and provider needs and motivated policy makers to initiate changes to prevent future SCDY.