探讨遗传咨询师与患者讨论临床试验的做法。

IF 1.9 4区 医学 Q3 GENETICS & HEREDITY Journal of Genetic Counseling Pub Date : 2024-06-09 DOI:10.1002/jgc4.1934
Thea Bloom, Katherine E Bonini, Melissa Gutierrez-Kapheim, Lisa M Kinsley, Maureen E Smith, Debra Duquette
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引用次数: 0

摘要

尽管各方齐心协力,加快通过临床研究增加医学和疾病知识的步伐,但所有患者群体的临床试验注册率仍然很低。向遗传性疾病患者或高危人群宣传临床试验的可用性至关重要。本研究为确定临床试验讨论在遗传咨询实践中的作用奠定了基础。通过美国国家遗传咨询师协会(National Society of Genetic Counselors)的匿名调查,我们邀请了美国经委员会认证的、面向患者的遗传咨询师参与调查。2022 年 2 月至 4 月间,157 名参与者(N = 157)完成了调查,内容涉及与患者讨论临床试验、与患者讨论临床试验的障碍和促进因素、研究经验和人口统计学。调查结果显示,大多数受访者曾与患者讨论过临床试验的可用性(85%)。近三分之一的受访者曾有为临床试验工作的研究经历(30%)。大多数人认为讨论临床试验属于遗传咨询的范围(82%);但是,有三分之一的人不愿意与患者讨论临床试验(34%)。知道如何查找特定临床试验的受访者(p
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Exploring genetic counselors' practice of discussing clinical trials with patients.

Despite concerted and accelerated efforts to increase the knowledge of medicine and disease via clinical studies, clinical trials continue to face low enrollment for all patient groups. The dissemination of the availability of clinical trials to individuals with or at risk for hereditary disorders is critical. This study acts as a foundation in determining an unexplored role of clinical trial discussion in genetic counseling practice. Board-certified, patient-facing genetic counselors in the United States were invited to participate in an anonymous survey via the National Society of Genetic Counselors. Between February and April 2022, 157 participants (N = 157) completed the survey on clinical trial discussion with patients, barriers, and facilitators to discussing clinical trials with patients, research experience, and demographics. Survey results identified that most respondents have discussed the availability of clinical trials with a patient (85%). Almost one-third have previous research experience working for a clinical trial (30%). Most agreed that discussions of clinical trials are within the scope of genetic counseling (82%); however, one-third were not comfortable discussing them with patients (34%). Respondents who know how to find specific clinical trials (p < 0.001) were reportedly more likely to be comfortable discussing clinical trials with their patients. In addition to clinical research exposure, this study suggests that further education and training is necessary for genetic counselors to learn how to find and identify specific clinical trials for their patients. In turn, we hope for this to increase genetic counselors' comfort of clinical trial discussion.

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来源期刊
Journal of Genetic Counseling
Journal of Genetic Counseling GENETICS & HEREDITY-
CiteScore
3.80
自引率
26.30%
发文量
113
审稿时长
6 months
期刊介绍: The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.
期刊最新文献
The current landscape of clinical exome and genome reanalysis in the U.S. A cross-sectional survey-based exploration of diversity in the admissions committees and student cohorts of genetic counseling programs over time. An analysis of direct-to-consumer genetic testing portals and their communication of health risk and test limitations. Patient perceptions of genetic counselors' role and emotional support needs in adults with Parkinson's disease Clinical genetic counselors' use of people‐ and identity‐first language in regard to patients' identification with disability
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