Provision of Cardiovascular Genetic Counseling Services: Current Practice and Future Directions
Provision of Cardiovascular Genetic Counseling Services: Current Practice and Future Directions
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提供心血管遗传咨询服务：当前实践和未来方向
DOI：
10.1007/s10897-014-9719-2
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发表时间：
2014
影响因子：
1.9
通讯作者：
E. Miller
中科院分区：
文献类型：
--
作者：
Allyson E. Somers;S. Ware;Kathleen Collins;J. Jefferies;Hua He;E. Miller
心血管遗传咨询已成为对遗传性心血管疾病患者的护理至关重要的专业。目前满足不断增长的需求的策略尚不清楚。我们试图通过开展一项新颖的调查来描述心脏遗传咨询的实践模式，该调查分发给国家遗传咨询师协会（NSGC）Listserv以评估临床实践、心血管培训和教育。使用描述性统计总结临床实践； Fisher 精确检验和 Cochran-Armitage 趋势检验用于比较心血管遗传咨询师 (CVGC) 与那些不将心脏病学视为专业的人 (非 CVGC) 的实践。共有 153 人完成了调查。在 105 名报告见过心脏遗传学患者的参与者中，有 42 人 (40%) 认为自己是 CVGC。提供遗传咨询的最常见疾病是肥厚性心肌病 (HCM)（71% 的参与者）、扩张型心肌病 (DCM) (61%)、长 QT 综合征 (LQTS) (56%) 和心血管疾病遗传综合征 (55%)。 CVGC 在为七种心血管疾病提供遗传咨询方面比非 CVGC 显着更有信心 (2.3 × 10−6 ≤ p ≤ 0.021)。百分之八十六的遗传咨询师寻求与心血管遗传学相关的额外教育，并将在线课程列为最理想的学习方法。这些数据表明 NSGC 成员对心血管遗传咨询的兴趣日益浓厚，并且需要额外的培训资源。
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.
DOI：
10.1161/circheartfailure.108.817346
发表时间：
2009-05
期刊：
Circulation. Heart failure
影响因子：
--
作者：
Hershberger RE;Cowan J;Morales A;Siegfried JD
通讯作者：
Siegfried JD