A Parent Survey: Characteristics of Sudden Cardiac Arrest in Youth

Our aim was to describe characteristics of sudden cardiac arrest (SCA) in youth based on a parent survey and identify potential associations. A cross-sectional retrospective observational survey of Parent Heart Watch members whose children had experienced SCA or sudden cardiac death. Questions included individual and family information. We present summary statistical analyses for the overall group, survivors, and nonsurvivors. There were 76 responses: 17.1% (13) survivors with no significant demographic differences by survivors/nonsurvivors except sex (p=0.04). Total study population age at SCA, median, 15.5 yrs.; age range, 5.5-28 yrs.; Sex: male, 76.3%; Race/ethnicity: White, 82.9%; Black, 4.0%; >1 race, 5.3%; Unknown, 7.9%; Hispanic, 10.5%; Family history SCA<50 yrs, 15.8%. Potential cardiovascular symptoms were common, 68.4%. No significant symptom difference between survivors/nonsurvivors who experienced fatigue, palpitations, and chest pain. Activity-related SCA was common, 61.9%. At least one medication, substance: caffeine, energy drinks, alcohol, or tobacco, was consumed at or around the time of the cardiac arrest in 56.6%. More arrests at home vs school in nonsurvivors. Survival in 5/15 events (33%) when automated external defibrillator (AED) on site; higher survival with combined cardiopulmonary resuscitation (CPR)/AED use (p= 0.001) and AED shock delivered (p=0.004). Symptoms were common but frequently not investigated. Family history was often unknown. Potentially important SCA associations include activity, medications/substances, and intercurrent illnesses, often in the presence of underlying and undiagnosed heart conditions. The location of SCA, CPR, AED use, and Emergency Medical Services arrival time affected survival. • Parents of young people experiencing SCA/SCD have a unique perspective. • Surveying these parents provided previously unreported findings. • Symptoms were common prior to SCA/SCD in both survivors and nonsurvivors, 68.4%. • Activity was associated with SCA/SCD in 61.9%. • At least 1 medication or substance was consumed at or around the SCA/SCD in 56.6%.