Colleen M McBride

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.

Psychosocial factors associated with genetic testing status among African American women with ovarian cancer: Results from the African American Cancer Epidemiology Study

BackgroundRacial disparities in the uptake of cancer genetic services are well documented among African American (AA) women. Understanding the multiple social and psychological factors that can influence the uptake of genetic testing among AA women is needed.MethodsData came from 270 AA women diagnosed with ovarian cancer and participating in a population‐based, case‐control study of ovarian cancer who were asked about genetic testing. Logistic regression analyses tested the associations of predisposing, enabling, and need factors with reported genetic testing uptake.ResultsOne‐third of the sample (35%) reported having had genetic testing. In the multivariable model, AA women with higher incomes had more than double the odds of being tested than those with the lowest income (odds ratio [OR] for $25,000‐$74,999, 2.04; 95% confidence interval [CI], 1.06‐3.99; OR for ≥$75,000, 2.32; 95% CI, 0.92‐5.94). AA women who reported employment discrimination were significantly less likely to report genetic testing than those who did not report job discrimination (OR, 0.39; 95% CI, 0.14‐0.95). Marital status, Medicaid versus other insurance, prayer frequency, and perceived social support were significantly associated with genetic testing uptake in bivariate analyses but were not significant contributors in multivariable analyses.ConclusionsConsistent with other studies of AA women, a minority of African American Cancer Epidemiology Study participants had undergone genetic testing. Having a lower income and experiencing job discrimination decreased the likelihood of testing. These results provide foundational evidence supporting the need for interventions to improve the uptake of genetic testing among AA women by reducing cost barriers and providing credible assurances that genetic results will be kept private and not affect social factors such as employability.

Applying citizen science to engage families affected by ovarian cancer in developing genetic service outreach strategies

Citizen science (CS) approaches involving non-professional researchers (citizens) as research collaborators has been used infrequently in health promotion generally and specifically, in cancer prevention. Standardized CS approaches may be especially useful for developing communication interventions to encourage families to consider cancer genetic services. We engaged survivors of ovarian cancer and their close relatives as CS collaborators to collect and help interpret data to inform content for a website, printed invitation materials, and short-message reminders. We applied an implementation quality framework, and posed four research questions regarding the feasibility of CS: recruitment, data collection, data quality and evaluation of the experience. CS members were recruited through three networks: clinical sites, local and national cancer support organizations, and online ovarian cancer patient support groups. The professional research team operationalized theory-aligned CS tasks, five data collection options, question banks/scripts for creating surveys, structured interviews, online training and ongoing support from research coaches. 14 CS members agreed to the 12-week and 20-hour commitment for an honorarium. CS members opted to do both qualitative and quantitative assessments. CS members collected 261 surveys and 39 structured interviews. The largest number of surveys were collected for Task 1 (n = 102) to assess survivors’ reactions to different possible options for motivating survivors to visit a study website; 77% of this data were complete (i.e., no missing values). Data collected for tasks 2, 3, 4, and 5 (e.g., assessment of survivors’ and relatives’ respective communication preferences) ranged from 10 to 58 surveys (80% to 84% completeness). All data were collected within the specified time frame. CSs reported 17 hours of work on average and regarded the experience positively. Our experience suggests that CS engagement is feasible, can yield comprehensive quantitative and qualitative data, and is achievable in a relatively a short timeline.

Sequential EHR Based Interventions to Increase Genetic Testing for Breast and Ovarian Cancer Predisposition

The goal of this sequential study design is to increase genetic testing in those meeting national clinical guidelines. The main question it aims to answer is: which intervention is most effective in uptake of genetic testing for the target population? Participants will receive genetic testing and counseling that may initiate life-saving screenings.

Connecting Families to Overcome Ovarian Cancer

This study tests a multi-component, low cost, message-based communication outreach intervention to engage ovarian cancer survivors and their at-risk relatives in considering cancer genetic services. The intervention includes foot-in-the-door techniques, tailored/targeted print, website support, and short messages to expand reach of prevention messages.