Testing a Low Cost Population- and Theory-Based Outreach Intervention to Engage Ovarian Cancer Survivors and their Close Relatives to Consider Genetic Services

项目总结 大多数卵巢癌风险最高的女性都没有被告知她们的风险增加了。与 迫切需要有救命的预防办法，识别和告知这些妇女的新办法 需要的。目前识别卵巢癌患者的专业癌症护理方法显示覆盖范围有限 给可能受益最大的近亲。利用全州癌症登记的追溯方法 正在进行的监测活动为接触卵巢癌幸存者提供了一个潜在的低成本平台 近亲。传播理论表明，有必要发布风险信息，解决癌症宿命论和 在这种情况下，对自己的信息打折扣和保持距离的倾向。无处不在的技术 可以是传递这些信息的渠道，可以通过创造性的临床医生培训提供遗传服务 合伙企业。然而，当从以临床为基础的级联筛查转向 人口层面的追溯计划。例如，流行的观念认为，患者必须在 与近亲的接触需要重新考虑；患者突变时接触的偏好 情况尚不清楚，还有待评估。公民科学方法为获得 与人口外展的伦理挑战有关的社区智慧。与标准杆18-616保持一致 呼吁“对追踪方法进行创新的试点研究，以确定卵巢癌幸存者和近亲的身份。” 具体目标是：目标1：招募社区伙伴作为公民科学家：识别和招募佐治亚州 有卵巢癌个人/家族病史的居民，生成内容，并在可扩展的 以信息为基础的外展干预，以接触到卵巢癌幸存者和近亲(即，第一和 二级亲属)考虑基因服务选项。目的2：在双臂随机干预试验中 (N~2,918)，比较基于消息的外展干预与标准外展对以下方面的影响：幸存者 适当的癌症遗传服务的可及性、相对可及性和接受性(例如，遗传咨询和检测 幸存者，亲属的在线遗传风险评估)在通过州确定的卵巢癌幸存者中 癌症登记处。我们假设，基于消息的方法将导致更大的覆盖面和接受度 基因服务而不是标准的外展。目标3：进行与RE-AIM一致的过程评估 与随机对照试验一起衡量的框架：反应、发出/接收的剂量、保真度、可接受性、 障碍/促进者，并与道德原则保持一致。如果被证明是有效的，结果可能会通知 在其他州和其他可遗传癌症中公平提供基因服务的计划。

PROJECT SUMMARY Most women at the greatest risk for ovarian cancer have not been informed about their elevated risk. With the availability of life-saving prevention options, novel approaches to identify and inform these women is urgently needed. Current specialty cancer-care approaches that identify patients with ovarian cancer show limited reach to close relatives who could benefit most. Traceback approaches that leverage state-wide cancer registries' ongoing surveillance activities offer a potentially low cost platform for outreach to ovarian cancer survivors' close relatives. Communication theories suggest the need for risk messages that address cancer fatalism and tendencies to discount and distance oneself from information in this context. Ubiquitously available technology can be a channel for these messages and genetic services can be offered via creative clinician-in-training partnerships. However, ethical questions will arise when shifting from clinic-based cascade screening to population-level traceback programs. For example, the prevailing notion that patients must make initial contact with close relatives warrants reconsideration; preferences regarding contact when patient's mutation status is unknown have yet to be assessed. Citizen science methods offer a feasible platform for gaining community wisdom related to the ethical challenges of population outreach. In alignment with the PAR 18-616 call for “innovative pilot studies of traceback methods to identify ovarian cancer survivors and close relatives,” the specific aims are: Aim 1: To enlist community partners as citizen scientists to: identify and recruit Georgia residents with a personal/family history of ovarian cancer, generate content, and collaborate on a scalable message-based outreach intervention to reach ovarian cancer survivors and close relatives (i.e., first- and second-degree relatives) to consider genetic service options. Aim 2: In a two-arm randomized intervention trial (N~2,918), to compare a message-based outreach intervention to standard outreach for effects on: survivor reach, relative reach, and uptake of appropriate cancer genetic services (i.e., genetic counseling and testing for survivors, online genetic risk assessment for relatives) among survivors of ovarian cancer identified via a state cancer registry. We hypothesize that the message-based approach will result in greater reach and uptake of genetic services than standard outreach. Aim 3: To conduct a process evaluation consistent with the RE-AIM framework alongside the RCT to measure: reactions, dose delivered/received, fidelity, acceptability, barriers/facilitators, and alignment with ethical principles. If shown to be effective, results could inform programs to fairly offer genetic services in other states and for other heritable cancers.