患者在接受遗传性心血管疾病的远遗传护理方面的经验
Dani S Temares1, Lusha W Liang2, Amanda L Bergner1,3,4
1Genetic Counseling Graduate Program, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY, USA.
Journal of community genetics
|December 14, 2023
概括
远程遗传学提供方便的遗传检测和咨询,但非本地患者面临着获得后续护理的挑战. 确保对心脏遗传学服务的平等获取需要解决这些差异.
科学领域:
- 心血管遗传学 心血管遗传学
- 遗传学 是一个遗传学.
- 远程医疗远程医疗
背景情况:
- 远程遗传学在COVID-19大流行期间扩大了遗传服务.
- 这项研究检查了患者在心脏遗传学中的远程遗传学的经验.
- 专注于本地与非本地患者体验.
研究的目的:
- 在心脏遗传学中,用远程遗传学质量地探索患者的经验.
- 为了比较接受遗传咨询和测试的本地和非本地患者的经验.
- 识别心脏遗传服务中远程遗传学的挑战和好处.
主要方法:
- 对12个基因型阳性个体的定性研究.
- 在COVID-19大流行期间,参与者接受了远程遗传咨询和测试.
- 本地和非本地患者之间的经验比较.
主要成果:
- 当地和非本地患者都发现远程遗传学和家庭测试很方便.
- 参与者报告说,由于基因测试结果呈阳性,他们的生活发生了变化.
- 与非本地患者相比,本地患者可以更好地获得计划后续护理.
结论:
- 远程遗传学是心脏遗传检测的一个方便的方法.
- 对于非本地患者来说,随访护理的获取存在差异.
- 简化转诊流程和参与患者组织对于非本地患者护理至关重要.
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