Testing a Population-Based Outreach Intervention for Ovarian Cancer Survivors to Encourage their Close Relatives to Consider Genetic Counseling

Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Impact: 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.

Figure 1.

CONSORT 2010 flow diagram. This flowchart details the progress through the phases of a randomized trial including enrollment, intervention allocation, follow-up, and data analysis following the CONSORT 2010 guidelines.

Figure 2.

Key components of the YFC intervention and theoretical constructs. This illustration outlines the main elements of the YFC intervention and the theoretical framework underpinning it.

Figure 3.

Intervention flow diagram. This diagram shows the process involved in the implementation of the intervention.