Division of Genetic Medicine, Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA.
College of Public Health, University of South Florida, Tampa, Florida, USA.
J Cancer Educ. 2022 Aug;37(4):1129-1136. doi: 10.1007/s13187-020-01929-5. Epub 2021 Jan 5.
To address the increasing demand for inherited cancer genetic testing, we developed and evaluated a web-based educational tool to streamline genetic counseling (GC). Consented patients viewed the initial prototype containing core content (Version 1-Core) and provided feedback through three open-ended survey questions. Additional data were collected through individual interviews from a subgroup who viewed an enhanced version (Version 1-Enhanced), consisting of the same core content and additional optional content. Data were coded to synthesize most commonly repeated themes and conceptualize action items to guide refinement strategies. Of 305 participants, 80 responded to open-ended survey questions to suggest refinement strategies, after viewing Version 1-Core. Interviews with a subgroup of seven participants, who viewed Version 1-Enhanced, provided additional feedback. Of 11 unique action items identified, five overlapped across datasets (provide instructions, simplify language, improve visuals, embed knowledge questions with explanations, include more insurance-related information), three were identified only through open-ended survey data (incorporate automatic progression, clarify test result information, increase interactive content), and three were identified only through interviews (ensure core content is viewed, incorporate progress bar, feature embedded optional content at the end of the tool). Ten action items aligned with underlying tool objectives to provide an interactive online pre-test GC solution and were used to guide refinement strategies. Our results demonstrate the value of rigorous qualitative data collection and analysis in health research and the use of the self-directed learning framework and eHealth strategies to leverage technology in scaling up and innovating the delivery of pre-test GC for inherited cancer.
为了满足日益增长的遗传性癌症基因检测需求，我们开发并评估了一种基于网络的教育工具，以简化遗传咨询（GC）。同意参与的患者观看了包含核心内容的初始原型（版本 1-核心），并通过三个开放式调查问题提供了反馈。通过对观看增强版（版本 1-增强版）的小组成员进行单独访谈，收集了更多数据，增强版包含相同的核心内容和额外的可选内容。对数据进行编码，以综合最常重复的主题，并构思行动项目，以指导改进策略。在 305 名参与者中，有 80 名在观看了版本 1-核心后，通过开放式调查问题提出了改进策略的建议。对观看了版本 1-增强版的七名小组成员进行了访谈，提供了额外的反馈。在确定的 11 个独特的行动项目中，有 5 个在两个数据集之间重叠（提供说明、简化语言、改进视觉效果、将知识问题嵌入带有解释的内容中、包含更多与保险相关的信息），有 3 个仅通过开放式调查数据确定（纳入自动进度、澄清测试结果信息、增加互动内容），有 3 个仅通过访谈确定（确保核心内容被观看、纳入进度条、在工具末尾展示嵌入式可选内容）。有 10 个行动项目与底层工具目标一致，旨在提供互动式在线预测试 GC 解决方案，并用于指导改进策略。我们的结果表明，在健康研究中，严格的定性数据收集和分析、自我指导学习框架以及电子健康策略的使用具有价值，可利用技术来扩大和创新遗传性癌症预测试 GC 的提供方式。
