Barriers to Family History Collection and Family Medical Screening Recommendation in the Sudden Death in the Young Case Registry

Abstract

Sudden death in the young (SDY) poses a public health problem affecting thousands of individuals annually in the United States. The SDY Case Registry utilizes existing infrastructure of death investigation programs, including medical examiner/coroner (ME/C) systems, to enhance understanding of SDY causes and risk factors to inform prevention strategies. This includes identifying and promoting screening recommendations for at-risk family members. To explore barriers to family history collection and familial screening recommendation procedures across Registry sites, nine individuals from seven SDY sites were interviewed. Interviews focused on logistics, methods to address barriers, and recommendations for improvements. Despite variability in practices, data analysis revealed three common themes related to barriers of these processes: (1) timing and grief, (2) lack of family history in medical records, and (3) families lost to follow-up. This study offers insights into these processes within the Registry and sheds light on broader practices within the death investigation domain. Data analysis led to recommendations for the improvement of these practices including the prioritization of three key family history questions during the initial death investigation by a designated individual in each office/system.