Inherited Cancer Knowledge Among Black Females with Breast Cancer Before and After Viewing a Web-Based Educational Video

Introduction

About 5-10% of breast cancers are attributed to pathogenic/likely pathogenic (P/LP) variants in high (e.g., BRCA1, BRCA2, and PALB2) and moderate (e.g., ATM and CHEK2) penetrance genes (NCCN, Version 2.2022). Despite longstanding availability of genetic testing, Black populations have disproportionately lower testing rates than non-Hispanic White (NHW) populations (Cragun et al, 2017). Yet emerging data suggest higher rates of BRCA P/LP variants among Black individuals across studies conducted in the United States (Ciuro et al, 2021; Pal et al, 2015), Caribbean (Donenberg et al, 2016; Donenberg et al, 2011), and sub-Saharan Africa (Adedokun et al, 2020; Zheng et al, 2018).

Lower awareness and support for obtaining genetic services contribute to the underutilization of genetic testing among Black populations (Kaplan et al, 2006). Yet recent studies indicate Black females were eager to receive genetic testing once they were made aware of the indications and implications (Adams et al, 2015).

Several national organizations have provided guidance on standard elements of pretest education before testing for inherited cancer predisposition (NCCN, Version 2.2022; Robson et al, 2015). However, with increasing demand for testing and a health care workforce with limited proficiency in genetics (Rubanovich et al, 2018), many tests are performed without pretest education (Cragun et al, 2015; Katz et al, 2018; Reid et al, 2020).

To make pretest genetic education more accessible, we previously developed and tested an educational video to cover standard pretest elements among a primarily NHW clinic-based population (Cragun et al, 2020; Tezak et al, 2022). Our results showed significant gains in knowledge across health literacy levels. Through this study, we extended our findings through testing this video in a population-based sample of young Black breast cancer survivors to assess knowledge gain and decisional empowerment after viewing the video.

Materials and Methods

Following institutional review board (IRB) approval, Black females with invasive breast cancer ≤ age 50 years were recruited from the Florida and Tennessee state cancer registries, as part of a larger study to evaluate genetic and nongenetic factors associated with outcomes. Participants were recruited using previously described state-mandated recruitment methods (Pal et al, 2011), which consisted of initial contact by mail and if no response, a phone call to explain the study and determine interest in participation. For those willing to participate, written informed consent was obtained and a baseline study questionnaire was completed.

For the currently described effort, a one group pre-post design study was used to evaluate the educational video. Specifically, all participants completed a baseline questionnaire to collect demographic and clinical information. A subset of more recently recruited participants were asked to respond with “agree,” “disagree,” or “don't know” to 10 inherited cancer knowledge questions (e.g., “Most cancer is caused by a gene change (mutation) that can be passed on to children”), previously developed and tested by the team (Cragun et al, 2020), before being provided access to view the web-based video.

The postvideo survey included the same knowledge questions, a four-item Sure of myself, Understand information, Risk-benefit ratio, Encouragement (SURE) checklist (Ferron Parayre et al, 2014) to measure informed and empowered decision making, and 3 Likert-scale items to assess attitudinal values toward genetic testing (Cragun et al, 2020). The four items to assess informed and empowered decision making included (1) “I know the benefits and risks of the genetic testing options,” (2) “I am clear about which benefits and risks matter most to me,” (3) “I have enough support and advice to make a choice,” and (4) “I feel sure about the best choice for me.”

The three items to assess attitudes toward genetic testing included (1) “I believe genetic testing will be useful for me,” (2) “Having genetic testing is important to me,” and (3) “I want to have genetic testing.” These items showed high interitem reliability (Cronbach α = 0.84).

For knowledge scores, 1 point was assigned for each correct answer. Median pre- and postvideo knowledge scores were compared using Wilcoxon signed-rank test to assess knowledge gains. Median knowledge scores were also calculated for participants with and without previous genetic testing and compared using an independent-samples median test. Overall pre- and postvideo knowledge scores were categorized as <60% versus ≥60% using the median postvideo knowledge score as the cutoff point and compared across demographic and clinical characteristics using binary logistic regression. Hosmer-Lemeshow tests were performed to determine goodness of fit for the regression models.

The proportion of participants who felt fully informed and empowered to make a decision (i.e., answered “yes” to all four SURE items) and the proportion who were favorable toward genetic testing (i.e., averaged ≥4 on the attitudinal values scale) after viewing the video were calculated. All statistical tests were conducted using IBM SPSS Statistics (Version 28) and were considered significant at an α of 0.05.

Results

Of the 96 participants who enrolled between October 2018 and February 2022 (Table 1), completed the surveys, and watched the video, median knowledge scores increased from 4 to 6 after viewing the video (p < 0.001). A total of 71 participants diagnosed with invasive breast cancer between 2009 and 2016 self-reported having prior genetic testing from 2009 to 2017 on their baseline questionnaire, of whom only 18 (25%) reported having testing ordered by a genetic counselor.

The majority reported having BRCA testing alone (49%), whereas 3% reported having single site testing, 20% reported having multigene panel testing, and 28% did not know the type of testing they had. There was no significant difference in median pre- and postvideo knowledge scores between those with and without previous genetic testing (all p > 0.05). Based on binary logistic regression analysis, participants with an income ≥$50 K, a college degree, and private insurance were more likely to score ≥60% after viewing the video (p = 0.043; p = 0.015; p = 0.032) (Table 2). After viewing the video, 74 (77%) participants felt fully informed and empowered to decide about genetic testing and 71 (74%) had favorable attitudinal values toward genetic testing.

Discussion

Our study is among the first to demonstrate that viewing a web-based educational video significantly increased inherited cancer knowledge in a population-based sample of young Black breast cancer patients. Higher knowledge score was associated with a higher income, education, and private insurance. After watching the video, most participants felt informed and empowered, and had favorable attitudinal values toward genetic testing.

Similar to our prior clinical-based study of NHW females (Cragun et al, 2020), we observed significant median knowledge score gains from 4 to 6 after watching the video. However, given that 74% of our population had prior genetic testing, it is surprising that knowledge scores were not higher in our current study, which may be a result of limited or no pretest education highlighting the potential value of our efforts. In fact, although pretest genetic counseling is considered standard of care, prior state cancer registry-based studies in the United States demonstrated only ∼20% of breast cancer patients had testing by a genetic counselor (Katz et al, 2018; Reid et al, 2020).

Furthermore, we have also previously shown that patient recall about discussion of standard elements covered during pretest education for inherited cancer predisposition is significantly higher among those tested through a genetic counselor (Cragun et al, 2015; Reid et al, 2020). The low proportions of cancer patients tested through a genetic counselor, resulting in less adherence and discussion of standard pretest educational elements (NCCN, Version 2.2022; Robson et al, 2015), underscore the importance of our automated strategy to deliver pretest education.

We believe our tool represents a scalable solution to fill this gap given it uses fewer resources than in-person or remote genetic counseling. This type of effort to increase throughput is becoming increasingly important as the demand and indications for genetic testing expand and encompass treatment indications at point of care (NCCN, Version 2.2022). Among populations with existing disparities in the receipt of genetic testing, this is particularly critical to prevent further widening of health disparities.

Our findings that a lower income, no college degree, and no private insurance were associated with lower knowledge scores are consistent with the literature, highlighting the importance of considering social determinants of health in the delivery of health care services (Daniel et al, 2018). Moreover, the proportions who felt informed and empowered after viewing the video were similar in both our prior and current studies (77% vs. 75%). Our findings highlight the importance of individualizing care based on needs and providing additional resources where necessary. For some individuals, education through the pretest video may be enough for them to feel knowledgeable and informed to make a decision about testing; whereas in others, speaking to a genetics health professional may be desirable to ensure they make an informed decision.

Ultimately, the importance of efforts such as ours may be considered in the broader context of under-representation of individuals of African ancestry in research, including clinical trials (Aldrighetti et al, 2021). Consequently, our results highlight the need to test these types of interventions across various populations and settings to ensure utility and benefits across populations.

Studies from us and others have previously suggested that there may be a higher frequency of P/LP variants in inherited breast cancer genes among Black females with breast cancer in the United States (Pal et al, 2015), Caribbean (Donenberg et al, 2016; Donenberg et al, 2011), and sub-Saharan Africa (Adedokun et al, 2020; Zheng et al, 2018), ranging from 8% to 23%. Consequently, the higher prevalence of P/LP variants in inherited breast cancer genes among Black populations further heightens the importance of evaluating streamlined and scalable strategies to make genetic education more accessible before testing.

Although our findings extend testing of our educational video across a socioeconomically diverse population of young Black breast cancer survivors treated across multiple health care facilities, our results should be interpreted in the context of our study design. Informed and empowered decision making were only measured after viewing the video; therefore, we were unable to directly assess whether this was a result of our video. Furthermore, our sample included 74% with prior testing, which suggests possible self-selection bias in the sample, although this does not appear to have impacted results given scores among previously tested versus untested women did not differ.

In addition, although we were able to determine the type of health care provider who ordered the testing, receipt of genetic counseling was not included as part of our survey; thus, we were not able to determine the proportion of participants who underwent genetic counseling. Finally, retention of knowledge over time and impact on testing uptake could not be assessed through the current effort, but are the topic of study for our other ongoing efforts.

Conclusions

Findings from our study indicate that a web-based pretest genetic education tool for inherited cancer predisposition significantly increases knowledge, and that among this study population, most felt informed and empowered to decide about genetic testing. These efforts are critical as the health care system seeks strategies to scale up and streamline the delivery of cancer genetic services while maximizing the benefits of tailored post-test genetic counseling discussion, including results interpretation and guidance on medical management.