权益分类	功能权益	普通用户	{{item.name}}会员
{{category.name}}	{{benefitItem.name}}

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.

项目概要大多数卵巢癌风险最高的女性并未被告知她们的风险较高。随着迫切需要提供拯救生命的预防方案、识别这些妇女并为其提供信息的新方法需要。目前识别卵巢癌患者的专业癌症护理方法的范围有限给最能受益的近亲。利用全州癌症登记处的追溯方法持续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。传播理论表明需要针对癌症宿命论和在这种情况下，人们倾向于忽视信息并与信息保持距离。无处不在的技术可以成为这些信息的渠道，并且可以通过创造性的临床医生培训提供遗传服务伙伴关系。然而，当从基于临床的级联筛查转向基于临床的级联筛查时，将会出现伦理问题。人口层面的追溯计划。例如，普遍的观念是患者必须进行初步治疗。与近亲的联系需要重新考虑；患者突变时的接触偏好状态未知，尚待评估。公民科学方法提供了一个可行的平台与人口外展的道德挑战相关的社区智慧。符合 PAR 18-616 呼吁“对追溯方法进行创新试点研究，以识别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：确定并招募格鲁吉亚有卵巢癌个人/家族史的居民，生成内容，并就可扩展的项目进行协作基于信息的外展干预，以接触卵巢癌幸存者和近亲（即第一和第二二级亲属）考虑遗传服务选择。目标 2：在两组随机干预试验中 (N~2,918)，比较基于消息的外展干预与标准外展干预对幸存者的影响：适当的癌症遗传服务（即遗传咨询和检测）的覆盖范围、相对覆盖范围和采用率通过国家确定的卵巢癌幸存者中的幸存者（亲属的在线遗传风险评估）癌症登记处。我们假设基于消息的方法将导致更大的影响力和采用率遗传服务高于标准外展服务。目标 3：进行与 RE-AIM 一致的过程评估框架与 RCT 一起测量：反应、递送/接收的剂量、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。