Provision of Cardiovascular Genetic Counseling Services: Current Practice and Future Directions

Allyson E. Somers, Stephanie M. Ware, Kathleen Collins, John L. Jefferies, Hua He, Erin M. Miller

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.