开发和评估可扩展的数字健康工具,用于早发性结直肠癌患者的检测前遗传教育:混合方法设计。

IF 3.3 Q2 ONCOLOGY JMIR Cancer Pub Date : 2025-01-17 DOI:10.2196/59464
Jessica N Rivera Rivera, Moran Snir, Emilie Simmons, Tara Schmidlen, Misha Sholeh, Melinda Leigh Maconi, Carley Geiss, Hayden Fulton, Laura Barton, Brian D Gonzalez, Jennifer Permuth, Susan Vadaparampil
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引用次数: 0

摘要

背景:国家指南推荐所有早发性结直肠癌患者进行生殖系基因检测(GT)。随着靶向治疗和GT的最新进展,这些指南有望扩大到包括更广泛的结直肠癌患者群体。然而,缺乏遗传专业人员为知情同意提供必要的教育和支持。因此,迫切需要确定替代方法来促进和加快获得GT。目的:本研究描述了一种测试前教育干预的发展,Nest-CRC,以促进早发性结直肠癌患者对种系GT的吸收。早发性结直肠癌患者和卫生保健提供者回顾了Nest-CRC,并使用嵌套混合方法捕获了他们的反应和建议。方法:采用学习者验证法,对英语和西班牙语的早发性结直肠癌患者和卫生保健提供者进行了2个连续阶段的调查和访谈。这些调查评估了参与者在遗传服务方面的经验,并就Nest-CRC遗传教育模块提供了即时反馈。半结构化访谈评估了参与者对Nest-CRC的自我效能感、吸引力、理解、文化可接受性和可用性的看法。调查数据采用描述性统计(平均值、中位数和比例)进行分析,而访谈数据则通过对转录的访谈逐行编码进行分析。每个阶段结束后,根据参与者的建议对Nest-CRC进行改进。结果:共有52名参与者参与了研究,其中包括39名早发性结直肠癌患者和13名提供者。其中,19名患者和6名提供者参加了第一阶段(N=25), 20名患者和7名提供者参加了第二阶段(N=27)。大多数参与者(阶段1:23/25,92%,到25/25,100%;阶段2:24/27(89%,到27/27(100%))同意5个教育模块中的每一个都很容易理解和有用;13例患者报告无GT病史,11例(85%)表示对GT感兴趣,2例(15%)在完成Nest-CRC后仍不确定。参与者报告说,Nest-CRC提供了足够的信息来帮助他们决定是否使用GT。该工具被来自不同背景的个人认为是可接受的,参与者发现它在视觉上很有吸引力,易于理解,并且用户友好。结论:研究结果表明,Nest-CRC是促进测试前教育和促进GT的一种有前景的策略。Nest-CRC已根据参与者的建议进行了改进,并将进行重新评估。
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Developing and Assessing a Scalable Digital Health Tool for Pretest Genetic Education in Patients With Early-Onset Colorectal Cancer: Mixed Methods Design.

Background: National guidelines recommend germline genetic testing (GT) for all patients with early-onset colorectal cancer. With recent advances in targeted therapies and GT, these guidelines are expected to expand to include broader groups of patients with colorectal cancer. However, there is a shortage of genetic professionals to provide the necessary education and support for informed consent. As such, there is a pressing need to identify alternative approaches to facilitate and expedite access to GT.

Objective: This study describes the development of a pretest education intervention, Nest-CRC, to facilitate the uptake of germline GT among patients with early-onset colorectal cancer. Patients with early-onset colorectal cancer and health care providers reviewed Nest-CRC, and their reactions and recommendations were captured using a nested mixed methods approach.

Methods: Using the learner verification approach, we conducted 2 sequential phases of surveys and interviews with English- and Spanish-speaking patients with early-onset colorectal cancer and health care providers. The surveys assessed participants' experiences with genetic services and provided immediate feedback on the Nest-CRC genetic education modules. Semistructured interviews evaluated participants' perceptions of self-efficacy, attraction, comprehension, cultural acceptability, and usability of Nest-CRC. Survey data were analyzed using descriptive statistics (mean, median, and proportions), while interview data were analyzed through line-by-line coding of the transcribed interviews. After each phase, Nest-CRC was refined based on participants' recommendations.

Results: A total of 52 participants, including 39 patients with early-onset colorectal cancer and 13 providers, participated in the study. Of these, 19 patients and 6 providers participated in phase 1 (N=25), and 20 patients and 7 providers participated in phase 2 (N=27). Most participants (phase 1: 23/25, 92%, to 25/25, 100%; phase 2: 24/27, 89%, to 27/27, 100%) agreed that each of the 5 education modules was easy to understand and helpful; 13 patients reported no history of GT, with 11 (85%) expressing interest in GT and 2 (15%) remaining unsure after completing Nest-CRC. Participants reported that Nest-CRC provided sufficient information to help them decide about GT. The tool was deemed acceptable by individuals from diverse backgrounds, and participants found it visually attractive, easy to comprehend, and user-friendly.

Conclusions: The findings revealed that Nest-CRC is a promising strategy for facilitating pretest education and promoting GT. Nest-CRC has been refined based on participant recommendations and will be re-evaluated.

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来源期刊
JMIR Cancer
JMIR Cancer ONCOLOGY-
CiteScore
4.10
自引率
0.00%
发文量
64
审稿时长
12 weeks
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