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

项目摘要 大多数卵巢癌风险最高的妇女没有被告知其风险升高。与 为了提供挽救生命的预防选择，迫切需要采取新的方法来识别和告知这些妇女， needed.目前识别卵巢癌患者的专业癌症护理方法显示范围有限 最能受益的近亲利用全州癌症登记处的追溯方法 正在进行的监测活动为卵巢癌幸存者提供了一个潜在的低成本平台。 近亲属传播理论表明，需要风险信息，解决癌症宿命论， 在这种情况下，倾向于贬低自己并与信息保持距离。无处不在的技术 可以成为这些信息的渠道，可以通过培训中的创造性临床医生提供遗传服务 伙伴关系。然而，当从基于临床的级联筛查转变为 人口级别的回溯程序。例如，流行的观念认为，患者必须进行初始 与近亲接触值得重新考虑;当患者突变时， 状况不明，尚待评估。公民科学方法提供了一个可行的平台， 与人口外联的道德挑战有关的社区智慧。根据PAR 18-616 呼吁“追溯方法的创新试点研究，以确定卵巢癌幸存者和近亲，” 具体目标是：目标1：招募社区合作伙伴作为公民科学家，以确定和招募格鲁吉亚 有卵巢癌个人/家族史的居民，生成内容，并在可扩展的 以信息为基础的外展干预，以达到卵巢癌幸存者和近亲（即，第一代和 二等亲属）考虑遗传服务选择。目的2：在一项两组随机干预试验中 （N~ 2，918），比较基于信息的外展干预与标准外展对幸存者的影响： 适当的癌症遗传服务的范围、相对范围和吸收（即，遗传咨询和检测， 幸存者，亲属在线遗传风险评估）通过国家确定的卵巢癌幸存者中 癌症登记处我们假设，基于信息的方法将导致更大的范围和吸收， 遗传服务比标准推广。目标3：进行与RE-AIM一致的工艺评价 与RCT一起测量的框架：反应、递送/接受的剂量、保真度、可接受性， 障碍/促进因素，以及与道德原则的一致性。如果被证明是有效的，结果可以告知 在其他州和其他遗传性癌症公平提供遗传服务的计划。

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.