Sudden cardiac death (SCD) in the young is a devastating event and often due to an underlying genetic heart disease. Managing these families is complicated by uncertainty regarding clinical management and profound grief. This study sought to evaluate psychological wellbeing and experiences of at-risk relatives following SCD in the young.

Relatives who attended a specialized clinic following the SCD of a relative were invited to complete the Hospital Anxiety and Depression Scale (HADS) and a series of open-ended questions. Primary outcome measures were the HADS anxiety and depression subscales and a thematic qualitative analysis of the open-ended responses was performed. Clinical and genetic data were collected from the medical record.

Fifty relatives from 29 families returned surveys. The mean time since death was 4±2 years (mean age at death 23±10 years, 79% males). There was significant impairment in mean anxiety (8.7±4.3, p<0.0001) and depression (5.8±3.6, p<0.0001) scores compared to the general population. Mothers showed significantly impaired anxiety (10.9±4.0, p=0.001) and depression (7.3±3.3, p=0.001) scores, with 53% having an anxiety score above 11 suggesting probable anxiety disorder. Participants revealed a number of factors that have helped and hindered their ability to cope with the death, and their decisions relating to clinical screening.

The SCD of a young relative has significant and long-term emotional implications for the family, particularly for the mother.