Connecting Families to Overcome Ovarian Cancer

Trust and Privacy Concerns Among Cancer Survivors Who Did Not Visit a Research Website Offering Free Genetic Counseling Services for Families: Survey Study

Background Digital health tools, such as websites, now proliferate to assist individuals in managing their health. With user input, we developed the Your Family Connects (YFC) website to promote access to genetic services for survivors of ovarian cancer and their relatives. Although we estimated that half or more would access the website, only 18% of invited survivors did so. We assessed the extent to which perceived relevance of the information provided, trust, and privacy concerns influenced decisions not to access the website. Objective We designed a theory-based cross-sectional survey to explore the following questions: (1) To what extent did nonresponders endorse privacy concerns? (2) Were privacy concerns associated with recall of receiving the website invitation, time since diagnosis, age, and race? (3) Could we identify profiles of nonresponders that would guide the development of future interventions to encourage engagement in health websites for families affected by inherited cancers? Methods A sample of survivors who were eligible to access the website yet did not respond to the study invitation was identified by linking study IDs to the Georgia Cancer Registry information. The survey was brief and contained 27 items, including recall of the invitation, interest in ovarian cancer information, benefits of using health websites, trust in health websites, and trust in university-based health research. We conducted factor analyses, regression analyses, ANOVA, correlation analyses, and logistic regression to address research questions. Results Of the 650 nonresponders to whom we sent the short survey, 368 (56.3%) responded and provided sufficient data for analysis. The mean response of 2.57 on the trust scale was significantly below the scale midpoint of 3 (t360=11.78, P<.001), suggesting that survivors who did not log on were on average distrustful of health websites. Belonging to a racial or ethnic minority group was associated with being more trusting and less skeptical about health websites. Just 196 (30.1%) nonresponders recalled the invitation to visit the website. Logistic regression analysis indicated that age was the only significant predictor of recall. Testing a model with age, racial or ethnic minority status, and the 6 privacy concerns correctly classified 58.8% of nonresponders, a rate of successful classification that was not appreciably better than a logistic regression analysis that included only age as a predictor. Conclusions The nonresponders in the present study—particularly the White nonresponders—were skeptical of website platforms regardless of whether they recalled receiving a website invitation or not. Social marketing approaches geared toward building trust in web platforms by building a relationship with an information consumer and in collaboration with trusted organizations warrant further investigation. Trial Registration ClinicalTrials.gov NCT04927013; https://clinicaltrials.gov/study/NCT04927013

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.

Cam Escoffery

Colleen M McBride

James A Shepperd

Jingsong Zhao

Kevin Ward

Rebecca D Pentz

Weihua An

Yichun Cao

Yuan Liu

Yuan Liu, a professor at the Hangzhou Institute of Medicine, Chinese Academy of Sciences. He earned his PhD degree in Chemistry from the University of Florida under the supervision of Professor Weihong Tan (Member of Chinese Academy of Sciences). After conducting his postdoc training at the National Institute of Health（Mentor: Xiaoyuan Chen）and Harvard Medical School (Mentor: Omid Farokhzad), he joined the HIM as a principal investigator in May, 2021. Dr. Yuan Liu established a ProteoFish platform for proteomics, aptamer, and intelligent molecular-based cancer diagnosis and theraputics. He has published more than 40 papers in Nat. Rev. Mater., Acc Chem Res, JACS, Matter, ACS Nano, et al.

Yue Guan