Department of Behavioral, Social and Health Education Sciences, Emory University, Atlanta, Georgia.
Department of Hematology and Oncology, Winship Cancer Institute, Emory School of Medicine, Atlanta, Georgia.
Cancer Epidemiol Biomarkers Prev. 2024 Sep 3;33(9):1185-1193. doi: 10.1158/1055-9965.EPI-24-0147.
Most relatives of women with ovarian cancer are unaware of their increased risk for cancer and their eligibility for genetic counseling. State cancer registries offer a platform to communicate about inherited risk to this population.
We conducted a two-arm randomized trial to test a theory-based communication intervention-Your Family Connects (YFC)-compared to the standard Georgia Cancer Registry (GCR) contact. A total of 1,938 eligible ovarian cancer survivors were randomly assigned to either the YFC arm (n = 969) or the Standard Care arm (n = 969). We assessed the number of ovarian cancer survivors and their close relatives who logged on to the study website by arm.
Survivor reach was significantly higher in the Standard Care arm than YFC (20.8% vs. 15.2%, respectively; P < 0.001). However, reach to relatives was limited to listed relatives in the YFC arm (n = 20, 13.2%), with little participation from those in the Standard Care arm (n = 1, 0.4%). Pooling across arms, minority race, longer time since diagnosis, and older age were all significantly associated with a decreased likelihood that the survivor accessed the website.
The YFC intervention showed lower effectiveness for engaging survivors but was more effective than Standard Care in engaging at-risk relatives. Other factors (e.g., time since diagnosis) associated with lower reach must be considered in refining future outreach approaches.
Partnering with a state cancer registry to foster family communication about inherited cancer risk is feasible but the possibility for broad population reach warrants further testing.
大多数卵巢癌女性的亲属并不了解其癌症风险增加，以及他们是否有资格接受遗传咨询。州癌症登记处为向这一人群传达遗传性风险提供了一个平台。
我们进行了一项两臂随机试验，以测试一种基于理论的沟通干预措施——“Your Family Connects”（YFC）——与标准佐治亚癌症登记处（GCR）联系相比。共有 1938 名符合条件的卵巢癌幸存者被随机分配到 YFC 组（n=969）或标准护理组（n=969）。我们按手臂评估登录研究网站的卵巢癌幸存者及其近亲的数量。
标准护理组的幸存者联系率明显高于 YFC 组（分别为 20.8%和 15.2%；P<0.001）。然而，YFC 组只能联系到登记在册的近亲（n=20，13.2%），而标准护理组的近亲参与度很低（n=1，0.4%）。在两臂之间进行汇总，少数族裔、诊断后时间较长和年龄较大均与幸存者访问网站的可能性降低显著相关。
YFC 干预措施在联系幸存者方面的效果较低，但在联系高危亲属方面比标准护理更有效。其他因素（例如，诊断后时间）与较低的联系率相关，在改进未来的外展方法时必须考虑这些因素。
与州癌症登记处合作促进家庭沟通遗传性癌症风险是可行的，但需要进一步测试是否有可能广泛覆盖人群。
