探索遗传咨询师与患者讨论临床试验的实践
Thea Bloom1, Katherine E Bonini2, Melissa Gutierrez-Kapheim1
1Center for Genetic Medicine, Northwestern University, Chicago, Illinois, USA.
Journal of genetic counseling
|June 10, 2024
概括
大多数遗传咨询师都会讨论临床试验,但许多人缺乏安慰和知识. 对鉴定试验的进一步教育可以改善遗传咨询实践和患者参与临床研究.
科学领域:
- 医学遗传学 医学遗传学
- 临床研究 临床研究
- 基因咨询 基因咨询
背景情况:
- 跨患者群体的临床试验入学率仍然很低,阻碍了医学知识的进步.
- 向患有遗传性疾病的个体传播临床试验可用性至关重要.
- 临床试验讨论在遗传咨询中的作用是一个研究不足的领域.
研究的目的:
- 探索遗传咨询师关于临床试验讨论的当前做法,舒适度和感知障碍/促进者.
- 确定影响遗传咨询师与患者讨论临床试验的意愿和能力的因素.
- 为改善遗传咨询师参与临床试验招聘奠定基础.
主要方法:
- 一项匿名在线调查通过美国国家遗传咨询师协会分发给经过董事会认证的,面向患者的遗传咨询师.
- 在2022年2月至4月期间,从157名参与者收集了数据.
- 该调查评估了对临床试验,研究经验,舒适度和人口统计信息的讨论.
主要成果:
- 85%的遗传咨询师报告与患者讨论临床试验;30%之前有研究经验.
- 虽然82%的人同意临床试验讨论在范围之内,但34%的人不舒服地讨论它们.
- 熟悉寻找特定试验的辅导员显著更舒服 (p < 0.001).
结论:
- 遗传咨询师参与临床试验讨论,但安慰和知识各不相同.
- 需要加强教育和培训,使遗传咨询师具备识别和讨论特定临床试验的技能.
- 提高遗传咨询师的熟练程度可能会增加患者在遗传性疾病的临床研究中的入学率.
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