Zhang Yan, Yi Siqi, Trace Ciaran B, Williams-Brown Marian Yvette
School of Information, The University of Texas at Austin, Austin, TX, United States.
Center for Health Communication, Moody College of Communication and Dell Medical School, The University of Texas at Austin, Austin, TX, United States.
JMIR Cancer. 2022 Feb 8;8(1):e31263. doi: 10.2196/31263.
Experts in gynecological cancer care recommend that all patients with invasive or high-grade ovarian cancer (OC) undergo genetic testing. However, even patients who intend to take or have taken genetic tests have many unaddressed information needs regarding genetic testing. Existing genetic counseling falls short of adequately addressing this challenge.
This study aims to investigate the genetic testing-related information needs of patients with OC to inform the design of interactive technology-based interventions that can enhance communication of genetic testing information to patients.
We interviewed 20 patients with OC who had taken genetic tests and gathered genetic testing-related messages from an active OC web-based community. The interview transcripts and web-based community messages were analyzed using the qualitative content analysis method.
Data analyses produced a comprehensive taxonomy of the genetic testing-related information needs of patients with OC, which included five major topic clusters: knowledge of genetic testing as a medical test, genetic testing process, genetic testing implications for patients, implications for family members, and medical terminology. Findings indicated that patients wanted to receive information that was relevant, understandable, concise, usable, appropriate, sympathetic, and available when needed. They also preferred various channels to receive information, including internet-based technologies, print, and conversations with health care providers.
Patients with OC need a range of information to address the uncertainties and challenges that they encounter while taking genetic tests. Their preferences for channels to receive information vary widely. A multichannel information delivery solution that combines both provider-led and peer-to-peer education models is needed to supplement existing genetic counseling to effectively meet the genetic testing-related information needs of patients with OC.
妇科癌症护理专家建议，所有浸润性或高级别卵巢癌（OC）患者都应接受基因检测。然而，即使是打算进行或已经进行基因检测的患者，在基因检测方面仍有许多未得到满足的信息需求。现有的遗传咨询未能充分应对这一挑战。
本研究旨在调查OC患者与基因检测相关的信息需求，为基于交互式技术的干预措施设计提供参考，以加强向患者传达基因检测信息。
我们采访了20名已进行基因检测的OC患者，并从一个活跃的OC在线社区收集了与基因检测相关的信息。采用定性内容分析法对访谈记录和在线社区信息进行分析。
数据分析得出了OC患者与基因检测相关信息需求的全面分类，包括五个主要主题类别：作为医学检测的基因检测知识、基因检测过程、基因检测对患者的影响、对家庭成员的影响以及医学术语。结果表明，患者希望在需要时能收到相关、易懂、简洁、实用、恰当、有同情心且可得的信息。他们还更喜欢通过多种渠道获取信息，包括基于互联网的技术、印刷品以及与医疗服务提供者的交谈。
OC患者需要一系列信息来应对基因检测过程中遇到的不确定性和挑战。他们对信息接收渠道的偏好差异很大。需要一种结合提供者主导和 peer-to-peer教育模式的多渠道信息传递解决方案，以补充现有的遗传咨询，有效满足OC患者与基因检测相关的信息需求。
