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

Background 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. Methods 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. Results 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 < 0.01), probands (p < 0.05), reporting more physical symptoms (including those unrelated to CID) (p < 0.01), and more symptoms of anxiety (p < 0.05). Median risk assessment by LQTS patients was 15%, and by the clinician was 4.5%. No association was found between patient and clinician assessments of risk (r(s) = 0.13, ns), 56% of LQTS patients overestimated their risk, 14% underestimated and 30% were accurate. Conclusion Cardiac inherited disease patients' risk perceptions correlate poorly with those of the clinician. Patients overestimating risk tend to have physical symptoms usually unrelated to their CID, and underlying anxiety. Techniques to better communicate risk are needed.