Patients rely on their cardiologist to give them accurate information regarding their genetic cardiac disease

Aim:

Managing patients with genetic cardiac disease (GCD) is complex and should involve specialised multidisciplinary input. It is likely, however, that a large proportion of patients with a GCD do not have direct access to, and/or have not been referred to specialised services. This puts pressure on healthcare providers who may rarely see these conditions to provide accurate information. We aimed to assess where patients seek information, and who they trust when seeking information about their GCD.

Method:

104 cross sectional surveys were sent to registrants enrolled on the Tasmanian Branch of the Australian Genetic Heart Disease Registry. Tasmania was considered suitable as there is no specialised cardiogenetic clinic based in the state. Results: 42 out of 63 registrants (66.7%) who responded said that they had sought further information about their GCD: 22 registrants (34.9%) had looked on the internet, and 11 (17.5%) had asked their cardiologist. However, when registrants were asked who they would trust to give them accurate information about their GCD, 59 (93.7%) responded their cardiologist, 21 (33.3%) responded their GP, and five (7.9%) responded the internet.

Conclusion:

Whilst a large proportion of patients search the internet to find information about their GCD, they believe their cardiologist provides them with the most accurate information. This has implications for cardiologists who may seldom be exposed to GCDs, and for patients who do not have access to specialised clinics. Ongoing professional development and good knowledge of referral pathways are paramount to providing high quality care in this situation.