Perceptions of Risk of Cardiac Arrest in Individuals Living With a Cardiac Inherited Disease: Are the Doctor and the Patient on the Same Page?

Risk perceptions influence patient engagement with treatment recommendations, yet it is unknown whether patients with a cardiac inherited disease (CID) hold accurate risk perceptions. The study aimed to examine whether CID patients’ and clinician’s risk perceptions correlate and factors associated with patient perceptions. 202 CID patients (of 618 [36%]) participated in a postal survey assessing perceived risk of aborted cardiac arrest or sudden cardiac death (ACA/SCD). Median age was 53 (16 to 83 years); 86 had Long QT Syndrome (LQTS), 69 had hypertrophic cardiomyopathy, 12 had dilated cardiomyopathy, and 27 had ‘other’. Clinical and genetic characteristics were collected from the CID registry; clinical estimate of 5-year risk was determined for LQTS participants (n = 77) using a combination of cardiac arrest or syncope history, maximal QTc length, age, sex and genotype. Patients’ risk perceptions of ACA/SCD ranged from 0 to 100%, (median 20%). Greater risk perceptions were associated with: non-New Zealand (NZ) Europeans (p