Family Communication About Genetic Risk of Hereditary Cardiomyopathies and Arrhythmias: an Integrative Review
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Screening for hereditary cardiomyopathies and arrhythmias (HCA) may enable early detection, treatment, targeted surveillance, and result in effective prevention of debilitating complications and sudden cardiac death. Screening at-risk family members for HCA is conducted through cascade screening. Only half of at-risk family members are screened for HCA. To participate in screening, at-risk family members must be aware of their risk. This often relies on communication from diagnosed individuals to their relatives. However, family communication is not well understood and is ripe for developing interventions to improve screening rates. Until very recently, family communication of genetic risk has been mostly studied in non-cardiac disease. Using this non-cardiac literature, we developed the family communication of genetic risk (FCGR) conceptual framework. The FCGR has four main elements of the communication process: influential factors, communication strategies, communication occurrence, and reaction to communication. Using the FCGR, we conducted an integrated review of the available literature on genetic risk communication in HCA families. Descriptive analysis of 12 articles resulted in the development of categories describing details of the FCGR elements in the context of HCA. This review synthesizes what is known about influential factors, communication strategies, communication occurrence, and outcomes of communication in the context of HCA.
KeywordsHypertrophic cardiomyopathy Long QT syndrome Cascade screening Family communication Genetic risk Disclosure Inherited arrhythmia Inherited cardiomyopathies Sudden cardiac death
The authors acknowledge Janet K. Williams for thoughtful review of this work.
Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under award numbers F31NR014758 and T32NR009759 and the Midwest Nurses Research Society Dissertation Grant.
Compliance with Ethical Standards
Conflict of Interest
Lisa L. Shah and Sandra Daack-Hirsch declare that they have no conflict of interest.
Human Studies and Informed Consent
No human studies were carried out by the authors for this article. No animal studies were carried out by the authors for this article.
The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
- Al-Khatib, S. M., Yancy, C. W., Solis, P., Becker, L., Benjamin, E. J., Carrillo, R. G., et al. (2017). 2016 AHA/ACC clinical performance and quality measures for prevention of sudden cardiac death: a report of the American College of Cardiology/American Heart Association Task Force on Performance Measures. Journal of the American College of Cardiology, 69(6), 217–744.CrossRefGoogle Scholar
- Caleshu, C., Kasparian, N. A., Edwards, K. S., Yeates, L., Semsarian, C., Perez, M., et al. (2016). Interdisciplinary psychosocial care for families with inherited cardiovascular diseases. Trends in Cardiovascular Medicine, 26(7), 647–653. https://doi.org/10.1016/j.tcm.2016.04.010.CrossRefPubMedGoogle Scholar
- Christian, S., Atallah, J., Clegg, R., Guiffre, M., Huculak, C., Dzwiniel, T., et al. (2017). Uptake of predictive genetic testing and cardiac evaluation for children at risk for an inherited arrhythmia or cardiomyopathy. Journal of Genetic Counseling. Advance online publication. https://doi.org/10.1007/s10897-017-0129-0.CrossRefGoogle Scholar
- Kmet, L.M., Lee, R.C., & Cook, L.S. (2004). Standard quality assessment criteria for evaluating primary research papers from a variety of fields. Alberta Heritage Foundation for Medical Research.Google Scholar
- Vetter, V. L., Elia, J., Erickson, C., Berger, S., Blum, N., Uzark, K., & Webb, C. L. (2008). Cardiovascular monitoring of children and adolescents with heart disease receiving medications for attention deficit/hyperactivity disorder: a scientific statement from the American Heart Association Council on Cardiovascular Disease in the Young Congenital Cardiac Defects Committee and the Council on Cardiovascular Nursing. Circulation, 117, 2407–2423.CrossRefGoogle Scholar