Provision of Cardiovascular Genetic Counseling Services: Current Practice and Future Directions
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Cardiovascular genetic counseling has emerged as a specialty critical to the care of patients with heritable cardiovascular disease. Current strategies to meet the growing demand are not clear. We sought to characterize practice patterns of cardiac genetic counseling by developing a novel survey distributed to the National Society of Genetic Counselors (NSGC) Listserv to assess clinical practice, cardiovascular training, and education. Descriptive statistics were used to summarize clinical practice; Fisher’s exact test and the Cochran-Armitage trend test were used to compare the practice of cardiovascular genetic counselors (CVGCs) to those who did not identify cardiology as a specialty (non-CVGCs). A total of 153 individuals completed the survey. Of the 105 participants who reported seeing a cardiac genetics patient, 42 (40 %) identified themselves as a CVGC. The most common conditions for which genetic counseling was provided were hypertrophic cardiomyopathy (HCM) (71 % of participants), dilated cardiomyopathy (DCM) (61 %), long QT syndrome (LQTS) (56 %), and genetic syndromes with cardiovascular disease (55 %). CVGCs were significantly more confident than non-CVGCs in providing genetic counseling for seven cardiovascular diseases (2.3 × 10−6 ≤ p ≤ 0.021). Eighty-six percent of genetic counselors sought additional education related to cardiovascular genetics and listed online courses as the most desirable method of learning. These data suggest a growing interest in cardiovascular genetic counseling and need for additional training resources among the NSGC membership.
KeywordsGenetic counseling Cardiovascular genetics Cardiomyopathy Congenital heart disease Long QT syndrome Continuing education Training opportunities
This work has been supported by the NSGC Cardiovascular Special Interest Group Research Grant Award. Study data were collected and managed using REDCap electronic data capture tools hosted at the University of Cincinnati.
Conflict of Interest
Authors Somers, Ware, Collins, Jefferies, He, and Miller declare that they have no conflict of interest.
The University of Cincinnati/Cincinnati Children’s Hospital Medical Center offers an online Cardiovascular Genetics course for current students and continuing education units. None of the authors receive salary or other payments as a result of the course. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study. All institutional and national guidelines for the care and use of laboratory animals were followed.
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