Goodman Selina, Skirton Heather, Jackson Leigh, Jones Ray B
College of Medicine & Health, University of Exeter Medical School, RILD Building, Barrack Road, Exeter EX2 5DW, UK.
School of Nursing & Midwifery, University of Plymouth, Drake Circus, Plymouth PL4 8AA, UK.
Cancers (Basel). 2021 May 16;13(10):2404. doi: 10.3390/cancers13102404.
Individuals with pathogenic variants in genes predisposing to bowel cancer are encouraged to share this information within their families. Close relatives at 50% risk can have access to bowel cancer surveillance. However, many relatives remain unaware of their vulnerability or have insufficient information. We investigated the feasibility and acceptability of using a secure website to support information sharing within families at high risk of bowel cancer. Patients ( = 286) answered an anonymous cross-sectional survey, with 14 participating in telephone interviews. They reported that the diagnosis had a profound effect on them and their family relationships, and consequently desired more support from health professionals. Website content was created in response to the preferences of survey and interview participants. Reactions to the website from 12 volunteers were captured through remote usability testing to guide further refinement of the website. Participants welcomed the opportunity to store and share personal information via the website and wanted more information and help informing their relatives about the diagnosis. Important website topics were: healthy lifestyle; genetic testing; and how to talk to children about the diagnosis. A website providing online access to confidential documents was both feasible and acceptable and could translate into increased uptake of cancer surveillance, resulting in lower morbidity and mortality in these families.
鼓励患有易患肠癌基因致病性变异的个体在其家族内部分享这一信息。有50%风险的近亲可接受肠癌监测。然而，许多亲属仍未意识到自身的易感性或掌握的信息不足。我们调查了使用安全网站来支持肠癌高危家族内部信息共享的可行性和可接受性。286名患者回答了一项匿名横断面调查，其中14人参与了电话访谈。他们报告称，该诊断对他们及其家庭关系产生了深远影响，因此希望获得医疗专业人员更多的支持。根据调查和访谈参与者的偏好创建了网站内容。通过远程可用性测试收集了12名志愿者对该网站的反应，以指导网站的进一步完善。参与者欢迎通过该网站存储和分享个人信息的机会，并希望获得更多信息以及帮助告知亲属该诊断情况。网站的重要主题包括：健康的生活方式；基因检测；以及如何与孩子谈论该诊断。一个提供在线访问机密文件的网站既可行又可接受，并且可以转化为更高的癌症监测接受率，从而降低这些家庭的发病率和死亡率。
