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

测试基于人口和理论的低成本外展干预措施，以吸引卵巢癌幸存者及其近亲考虑遗传服务

基本信息

批准号：
10599248
负责人：
COLLEEN M MC BRIDE
金额：
$ 59.95万
依托单位：
EMORY UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2020
资助国家：
美国
起止时间：
2020-05-01 至 2025-04-30
项目状态：
未结题

项目摘要

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.

项目摘要大多数患卵巢癌风险最大的妇女尚未被告知其风险升高。与挽救生命的预防选择，识别和通知这些女性的新方法是迫切的需要。当前鉴定患有卵巢癌患者的特种癌症护理方法显示有限亲戚可以受益最大。追溯方法利用全州范围的癌症注册机构正在进行的监视活动为卵巢癌幸存者的外展提供了潜在的低成本平台亲戚。沟通理论表明需要对癌症宿命论和在这种情况下，打折和距离信息的趋势。无处不在的技术可以是这些消息的渠道，并且可以通过创造性的培训来提供遗传服务伙伴关系。但是，从基于诊所的级联筛查转变为人口级追溯计划。例如，患者必须首先提出的普遍观念与近亲接触保证重新考虑；关于患者突变时接触的偏好状态尚未评估。公民科学方法提供了一个可行的平台社区智慧与人口宣传的道德挑战有关。与第18-616标准杆一致呼吁“追溯方法的创新试点研究，以识别卵巢癌的生存和近亲” 具体目的是：目标1：以公民科学家的身份吸引社区伙伴以：识别和招募佐治亚州具有个人/家族史的卵巢癌，产生内容并合作的居民基于留言的外展干预措施，以达到卵巢癌的生存和近亲（即，第一和近亲二级亲戚）考虑遗传服务选择。目标2：在两臂随机干预试验中（n〜2,918），将基于消息的外展干预与标准外展比较：幸存者涉及适当的癌症遗传服务的范围，相对影响和吸收（即遗传咨询和测试幸存者，对亲戚的在线遗传风险评估）在通过一个州确定的卵巢癌存活中癌症注册表。我们假设基于消息的方法将导致更大的影响力和吸收遗传服务比标准外展。目标3：进行与RE-AIM一致的过程评估框架与RCT一起进行测量：反应，剂量交付/接收，忠诚，可接受性，障碍/促进者，并与道德原则保持一致。如果证明是有效的，结果可以告知计划在其他州和其他可遗传的取消遗传服务的计划。