Health literacy, genetic literacy and outcomes in patients with genetic cardiac disease: A review of the literature

Background: Health literacy is defined as the cognitive and social skill that individuals possess that enables them to appropriately access, understand and use health information to maintain good health. As genetic cardiac diseases are often theoretically complex chronic conditions that require lifelong medical input, appropriate health literacy and subsequently genetic literacy around a patient's condition is central to assisting in positive long-term outcomes.

Aim: To conduct a systematic review of the literature to examine existing evidence for health literacy, genetic literacy, and outcomes in patients with genetic cardiac diseases.

Methods: PubMed was searched using the term “(health OR genetic) literacy AND (genetic (cardiac AND heart) disease OR hypertrophic cardiomyopathy OR long QT syndrome)”, with no limits placed on the search. To ensure that allied health literature was included, the same search term was entered into Web of Science and CINAHL databases.

Results: No primary data articles were found relating to the search term entered. Two review articles were found speaking of the importance of genetic literacy, but there was no evidence providing supporting this claim.

Conclusion: There is currently no published primary data informing medical professionals of the characteristics of health or genetic literacy in patients with genetic cardiac disease, making it difficult to know if current practices are actively increasing health and genetic literacy and/or contributing to achieving improved health outcomes.