Abstract
Sudden death in the young (SDY) is a public health issue that affects thousands of individuals in the United States annually. Both non-inherited and inherited causes of SDY have been identified, with the latter potentially putting surviving family members at risk of sudden death as well. Utilization of family history along with autopsy findings can lead to the identification of at-risk families who should have screening in order to identify other affected individuals. The SDY Case Registry was created to determine the incidence of sudden young deaths, better understand causes and risk factors, and inform ways to prevent these deaths. This is the first study from the Registry regarding site-specific processes for family history collection and recommendation of familial medical screening. This study investigates these processes among the SDY Case Registry through semi-structured interviews with nine individuals from seven sites. Questions explored these procedures, focusing on logistics, barriers, methods for combating barriers, and recommendations for improvements. Transcripts were coded and analyzed, and three themes emerged: (1) Variation between sites, (2) Barriers, and (3) Triggers of familial medical screening recommendations. Though there is variation in practice among the sites, many experienced the same barriers of (i) Timing and grief, (ii) Lack of family history in medical records, and (iv) Families lost to follow-up. Sites also had devised ways of combating these barriers by (iii) Utilizing other sources of information. This study provides insight into the inner workings of these processes across the SDY Case Registry and recommendations to improve prevention efforts for at-risk family members.