Patient experiences of cancer genetic testing by non-genetics providers in the surgical setting.

IF 1.9 4区 医学 Q3 GENETICS & HEREDITY
Katie Fiallos, Erica Selznick, Jill Owczarzak, Melissa Camp, David Euhus, Mehran Habibi, Lisa Jacobs, Angelisa Johnson, Catherine Klein, Julie Lange, Patricia Njoku, Kala Visvanathan
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引用次数: 0

Abstract

As indications for hereditary cancer genetic testing (GT) for patients with breast cancer (BC) expand, breast surgery teams offer GT to newly diagnosed patients to inform surgical plans. There is, however, limited data on the experiences of patients undergoing cancer GT by non-genetic providers. This study used in-depth interviews with 21 women recently diagnosed with BC at a large academic health system to capture their experiences. Post-positivist codebook thematic analysis was used to identify major themes from the interviews. Participants reported an overall positive experience of this GT process, stating that they prefer GT at an existing appointment shortly after their diagnosis, even though they described the conversation as brief. Many participants indicated thinking about or desiring GT before the offer was made. Interestingly, most participants did not see surgical decision-making as the main reason for GT and were instead motivated by concern for relatives and to have complete information. Interview data indicated areas for improvement in patient-provider communication, and most participants agreed that additional reference information on GT in the form of written or video materials would be helpful. Offering GT at an initial breast surgery appointment is acceptable and desired by patients with a new BC diagnosis and should be considered as a way to increase access to GT for these patients. However, additional information for patients is needed to close gaps in communication and provide a trustworthy reference following a busy medical appointment.

非遗传学服务提供者在手术环境中进行癌症基因检测的患者体验。
随着乳腺癌(BC)患者遗传性癌症基因检测(GT)适应症的扩大,乳腺外科团队为新诊断的患者提供GT检测,为手术计划提供依据。然而,由非遗传学医疗机构提供的有关患者接受癌症基因检测经历的数据十分有限。本研究采用深入访谈的方式,在一家大型学术医疗系统采访了 21 名最近被诊断为 BC 的女性患者,以了解她们的经历。采用了后积极主义编码本主题分析法来确定访谈的主要主题。参与者报告说,她们对 GT 过程的总体体验是积极的,并表示她们更喜欢在确诊后不久的现有预约中进行 GT,尽管她们描述的对话很简短。许多参与者表示,他们在预约之前就考虑或希望接受 GT 治疗。有趣的是,大多数参与者并不认为手术决策是进行 GT 的主要原因,而是出于对亲属的关心和对完整信息的渴望。访谈数据表明,患者与医护人员之间的沟通还有待改进,大多数参与者都认为以书面或视频资料的形式提供更多有关 GT 的参考信息会有所帮助。在初次乳腺手术预约时提供 GT 是可以接受的,也是新确诊 BC 的患者所希望的,应考虑将其作为增加这些患者获得 GT 的途径。不过,还需要为患者提供更多信息,以弥补沟通上的不足,并在繁忙的就诊后提供值得信赖的参考。
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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.
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