A Video Intervention to Improve Patient Understanding of Tumor Genomic Testing in Patients with Cancer.

Background: Tumor genomic testing (TGT) has become standard-of-care for most patients with advanced/metastatic cancer. Despite established guidelines, patient education prior to TGT is variable or frequently omitted. The purpose of this study was to evaluate the impact of a concise (3-4 minute) video for patient education prior to TGT. Methods: Based on a quality improvement cycle, an animated video was created to be applicable to any cancer type, incorporating culturally diverse images, available in English and Spanish. Patients undergoing standard-of care TGT were enrolled at a tertiary academic institution and completed validated survey instruments immediately prior to video viewing (T1) and immediately post-viewing (T2). Instruments included: 1) 10-question objective genomic knowledge/understanding; 2) 10-question video message-specific knowledge/recall; 3) 11-question Trust in Physician/Provider; 4) attitudes regarding TGT. The primary objective was change in outcomes from before to after the video was assessed with Wilcoxon signed rank test. Results: From April 2022 to May 2023, a total of 150 participants were enrolled (MBC n=53, LC n=38, OC n=59). For the primary endpoint, there was a significant increase in video message-specific knowledge (median 10 point increase; p<0.0001) with no significant change in genomic knowledge/understanding (p=0.89) or Trust in Physician/Provider (p=0.59). Results for five questions significantly improved, including the likelihood of TGT impact on treatment decision, incidental germline findings, and cost of testing. Improvement in video message-specific knowledge was consistent across demographic groups, including age, income, and education. Individuals with less educational attainment had had greater improvement from before to after video viewing. Conclusions: A concise, 3-4 minute, broadly applicable video incorporating culturally diverse images administered prior to TGT significantly improved video message-specific knowledge across all demographic groups. This resource is publicly available at http://www.tumor-testing.com, with a goal to efficiently educate and empower patients regarding TGT while addressing guidelines within the flow of clinical practice. Clinical Trial Registration: ClinicalTrials.gov NCT05215769.

The Influence of Family Communication Patterns and Identity Frames on Perceived Collective Psychological Ownership and Intentions to Share Health Information.

An experimental study exposed participants (N = 299) to different message frames to investigate whether Family Communication Patterns (FCP) and message characteristics influenced willingness to communicate about Family Health History (FHH). Message frames were either collective (our), individual (mine), or control (no pronouns). Afterward, participants were asked about their perceived collective psychological ownership of health information, attitudes, subjective norms, and FHH communication intentions. Although the message frames had no impact on perceived collective psychological ownership of health information, conversation orientation and conformity orientation (respecting parental authority) were positively associated with perceived collective psychological ownership of health information. Additionally, perceived collective psychological ownership, attitudes, and subjective norms were found to have indirect effects between FCP and FHH communication intentions. These findings provide further support that FCP influences how health message appeals are processed and suggest interventions could be tailored to FCP orientations for effective FHH behaviors.

BRCAShare-Assessment of an animated digital message for intrafamilial communication of pathogenic variant positive test results: A feasibility study.

While genetic testing for hereditary breast and ovarian cancer syndrome (HBOC) is well-established in the field of medicine, family members' uptake of cascade genetic testing for known familial pathogenic variants remains low. Probands often become responsible for initiating familial communication about their testing results, and barriers to communication may include difficulty in conveying information to relatives and a lack of communication resources for probands' use. In this study, we tested a two-minute animated digital message (ADM) intervention guided by the Health Belief Model (HBM) in an unselected sample to determine hypothetical individual perceptions of susceptibility and severity and behavioral intention to act on the information provided in the ADM. We recruited genetic testing naïve adults from the United States with no personal history of cancer through Amazon Mechanical Turk to participate in this study. Participants were presented a hypothetical scenario describing a relative's recent HBOC diagnosis, viewed the ADM, and answered a questionnaire assessing participants' perception of the HBM constructs in relation to the hypothetical scenario and participants' intentions to pursue cascade genetic testing, talk to a healthcare professional, or talk to family members after ADM viewing. Participants (n = 373) largely perceived HBOC as serious and believed that they could benefit from the information provided by genetic testing; 76% hypothetically intended to pursue genetic testing at a cost of $100 or less, and 90% intended to either pursue testing or talk to a healthcare provider or family members. This feasibility study in an unaffected population could mimic the experience of distant/less-engaged relatives in HBOC families after receiving unexpected information about cascade genetic testing. Most participants demonstrated behavioral intention toward cascade testing, at a rate higher than literature would suggest is typical in high-risk families, indicating that a theory-supported, simple to use intervention may be useful in clinical practice.

Patient Understanding of Tumor Genomic Testing: A Quality Improvement Effort.

PURPOSE: Tumor genomic testing (TGT) has become increasingly adopted as part of standard cancer care for many cancers. Despite national guidelines around patient education before TGT, available evidence suggests that most patients' understanding of genomics remains limited, particularly lower-income and minority patients, and most patients are not informed regarding potential incidental germline findings. METHODS: To investigate and address limitations in patient understanding of TGT results, a Plan-Do-Study-Act (PDSA) approach is being used to assess needs, identify opportunities for improvement, and implement approaches to optimize patient education. We reviewed published guidelines related to pre-TGT provider-patient education and to identify key points (Plan). A provider quality improvement survey was completed (Do), which highlighted inconsistency in pre-TGT discussion practice across providers and minimal discussion with patients regarding the possibility of incidental germline findings. RESULTS: Patient focus groups and interviews (N = 12 patients) were completed with coding of each transcript (Study), which revealed themes including trouble differentiating TGT from other forms of testing, yet understanding that results could tailor therapy. The integration of data across this initial PDSA cycle identified consistent themes and opportunities, which were incorporated into a patient-directed, concise animated video for pre-TGT education (Act), which will form the foundation of a subsequent PDSA cycle. The video addresses how TGT may/may not inform treatment, the process for TGT using existing tissue or liquid biopsy, insurance coverage, and the potential need for germline genetics follow-up because of incidental findings. CONCLUSION: This PDSA cycle reveals key gaps and opportunities for improvement in patient education before TGT.

Effects of Exposure to an Entertainment-Based Genetic Testing Narrative on Genetic Testing Knowledge, Attitudes and Counseling Discussion Intentions.

This study explores the effects of exposure to a reality television narrative depicting genetic testing on attitudes and intentions, looking particularly at the effects of narratives containing elements of misinformation on genetics-related knowledge accuracy. In an experiment, participants completed a baseline survey, viewed a high versus low-accuracy narrative, then completed a follow-up survey. Exposure to a low-accuracy narrative was associated with lower knowledge accuracy. Indirect effects of identification and transportation on intentions to talk to a doctor about genetic testing also were detected via attitudes and reduced message counterarguing. Results illustrate the negative implications of inaccurate narratives on knowledge, which is concerning given the public's low level of genetic literacy, as well as the critical role narrative engagement may play in shaping public attitudes and intentions regarding genetic testing.

Communal Coping as a Strategy to Enhance Family Engagement in Dilated Cardiomyopathy.

BACKGROUND: Assuring that relatives are informed about a genetic diagnosis and have appropriate medical follow-up can be challenging. We hypothesize that communal coping (CC)-an approach in which a group views a stressor (such as a new genetic diagnosis) as our problem, versus my or your problem, and takes joint action to address it-can help families to address this challenge. A better understanding of CC could also inform counseling interventions to promote CC and family follow-up. METHODS: In the Dilated Cardiomyopathy (DCM) PM study (Precision Medicine), living first-degree relatives of DCM probands were invited to undergo clinical screening; 31% of these did so. This research program offers the opportunity to determine the frequency of CC in DCM families, assess whether CC attitudes and actions occurred more commonly among families in which family members participated, and conduct prospective follow-up to evaluate family coping and counseling needs over time. RESULTS: The proposed studies will provide evidence about the frequency of CC attitudes and actions among DCM families, assess the association of CC with increased family follow-up, and identify counseling needs related to family follow-up. CONCLUSIONS: The DCM PM study offers an opportunity to test the hypothesis that CC contributes to increased family follow-up and generate evidence to inform counseling interventions to encourage such follow-up.

Changes in COVID-19 Vaccine Hesitancy Among Black and White Individuals in the US.

Importance: COVID-19 has disproportionately affected Black individuals in the US; however, vaccination rates among Black individuals trail those among other racial groups. This disparity is often attributed to a high level of vaccine hesitancy among Black individuals, but few studies have examined changes in vaccine hesitancy over time. Objectives: To compare changes in vaccine hesitancy between Black and White individuals in the US and to examine mechanisms that might help explain the observed differences. Design, Setting, and Participants: This survey study used 7 waves of data collected using a panel design. A total of 1200 English-speaking adults in the US were recruited from a nonprobability online panel to construct a census-matched sample. Participants were contacted monthly between December 9, 2020, and June 16, 2021. Main Outcomes and Measures: The main outcome of interest was self-reported vaccination intention, measured on a 6-point scale (where 1 indicates extremely unlikely and 6 indicates extremely likely). Beliefs about the safety, effectiveness, and necessity of COVID-19 vaccines were measured on a 5-point Likert scale, with higher scores denoting greater agreement. Results: The baseline data included 1200 participants (693 women [52.0%; weighted]; 921 White individuals [64.0%; weighted], 107 Black individuals [12.2%; weighted]; weighted mean [SD] age, 49.5 [17.6] years). The survey participation rate was 57.0% (1264 of 2218). Black and White individuals had comparable vaccination intentions in December 2020, but Black individuals experienced larger increases in vaccination intention than White individuals relative to baseline in March 2021 (b = 0.666; P < .001), April 2021 (b = 0.890; P < .001), May 2021 (b = 0.695; P < .001), and June 2021 (b = 0.709; P < .001). The belief that the vaccines are necessary for protection also increased more among Black than White individuals in March 2021 (b = 0.221; P = .01) and April 2021 (b = 0.187; P = .04). Beliefs that the vaccines are safe and effective (b = 0.125; P < .001) and necessary (b = 0.405; P < .001) were positively associated with vaccination intention. There was no evidence that these associations varied by race. Conclusions and Relevance: This survey study suggests that the intention of Black individuals to be vaccinated was initially comparable to that of White individuals but increased more rapidly. There is some evidence that this increase is associated with changes in beliefs about the vaccine. Vaccination rates continue to be lower among Black individuals than White individuals, but these results suggest that this might be less likely the result of vaccine hesitancy than other factors.

Adding Affordances and Communication Efficacy to the Technology Acceptance Model to Study the Messaging Features of Online Patient Portals among Young Adults.

The use of messaging features within online patient portals could be beneficial to patients, but many patients do not utilize these features. Furthermore, it remains uncertain the reasons why patients may (or may not) use messaging features to communicate with a care provider. This study proposes and tests an extended Technology Acceptance Model (TAM), which incorporated perceived affordances (editability and persistence) and communication efficacy. An online survey was conducted with a sample of 525 young adults. Results showed that the editability affordance was conducted with perceived usefulness, while communication efficacy was associated with perceived ease of use of messaging. Editability and communication efficacy also were positively associated intention to use online patient portal messaging features, whereas persistence was negatively associated. Results suggest practitioners should emphasize editability and communication efficacy to increase patient intentions to use messaging features to communicate with a care provider.

Information Seeking and Risk Reduction Intentions in Response to Environmental Threat Messages: The Role of Message Processing.

Communicating complex information about environmental health risks in a single message is impossible. Thus, message designers hope that risk messages encourage people to think more about the message and risks, look for more information, and ultimately make behavior changes. The presentation of information about environmental risks using threat appeals is a common message design strategy thought to increase message engagement and influence attitudes, information seeking, and risk reduction behaviors. We compared lower threat messages, which did not include explicit statements about susceptibility and severity of a risk, to higher threat messages, which did. We combined predictions from the extended parallel process model with dual-process theories of persuasion to examine whether people respond to these types of messages differently. In an online experiment, participants (N = 892) were randomly assigned to a message condition (higher or lower threat) and topic condition (arsenic, bisphenol A, or volatile organic compounds). Overall, participants exposed to higher threat messages (regardless of risk topic) reported experiencing higher levels of fear. Higher levels of fear were associated with more positive thoughts about the message (in alignment with the message advocacy) and fewer negative thoughts about the message (against the message advocacy), both of which influenced message attitudes. Finally, message attitudes were associated with increased information seeking and intentions to engage in risk reduction behaviors.

The indirect effect of family communication patterns on young adults' health self-disclosure: Understanding the role of descriptive and injunctive norms in a test of the integrative model of behavioral prediction.

Family communication patterns (FCP) are relational schema theorized to influence behaviors indirectly via cognitive processes, including perceived norms. However, relatively little is known about the indirect effect of FCP on health self-disclosure via perceived norms. We examine FCP's associations with young adults' health self-disclosure to their parents, assessing the theory of normative social behavior and the integrative model of behavioral prediction. Young adults (N = 504) completed a cross-sectional survey. Mediation analysis showed the effect of conversation orientation on health self-disclosure via communication efficacy and descriptive norms. Injunctive norms moderated the indirect effect of descriptive norms on self-disclosure. Results suggest conversation, but not conformity orientation, influenced young adults' self-disclosure, while norms and efficacy act as predominant drivers of disclosure behavior.

The Influence of Family Communication Patterns on the Processing of Messages to Increase Family Health History Seeking Intentions.

The current study extends family communication patterns (FCP) research to assess how family communication schemata (conversation and conformity orientation dimensions) influence systematic processing of health appeals intended to persuade individuals to seek family health history information, emphasizing an updated conceptualization of family conformity (i.e., the expanded conformity orientation scale). Our results suggest that conversation orientation and the conformity dimension of parental control are the primary drivers of systematic processing of family health history messages. Systematic processing, in turn, was significantly associated with more positive attitudes and greater intentions to seek health information from family members. Our results suggest family communication patterns may impact individual engagement with family health history campaign messages, thus campaign designers may want to consider how best to tailor messages to match family communication characteristics.

Information Seeking Behaviors and Intentions in Response to Environmental Health Risk Messages: A Test of A Reduced Risk Information Seeking Model.

This study tests the effects of environmental health risk messages on perceived risk, information needs and decisions to seek information, testing a reduced risk information seeking and processing model (R-RISP). Participants (N = 1,823) were randomized to one of three risk conditions (arsenic, bisphenol A [BPA] or volatile organic compounds [VOCs]) and one of the three message conditions (high threat, low threat or no message); participants in the high and low threat message conditions were also randomly assigned to a seeking cue to action condition (with or without seeking cue). Overall, the results support the R-RISP model, demonstrating the importance of current knowledge perceptions and informational subjective norms in information acquisition decisions. In addition, the results also provide initial evidence that environmental health risk messages can prompt information seeking and increase intentions to seek information in the future. Avenues for future research are discussed.

The impact of a cascade testing video on recipients' knowledge, cognitive message processing, and affective reactions: A formative evaluation.

Cascade genetic testing is essential to clarify cancer risk in families with hereditary breast and ovarian cancer syndrome (HBOC) due to pathogenic variants (PVs) in BRCA1 or BRCA2. To date, data suggest that family communication of genetic testing results, with or without the aid of clinical resources such as a provider-written family letter, is impacted by multiple barriers. These barriers eventually lead to sub-optimal uptake of cascade genetic testing. We designed a 2-min animated video that a proband can share with relatives to notify them that the proband has tested positive for a pathogenic variant in BRCA1 or BRCA2. We studied the video via hypothetical scenario in an unselected population to simulate the process by which a relative receives unsolicited genetics information about their family member. We assessed the impact of the video on three specific domains: knowledge, cognitive message processing, and affective reactions. A total of 399 participants recruited through Amazon Mechanical Turk completed the study, and 373 were analyzed. The video significantly improved content knowledge/recall (p < .0001) from pre- to post-video viewing, indicating effective message communication. Items used to measure cognitive processing showed preliminary tendencies toward systematic message processing, which could be desired in familial communication aimed at initiating a specific action-in this case, cascade genetic testing. A majority of participants (66%) reported positive affective reaction as they indicated that they would feel gratitude if they received the video message from a relative, and did not evidence a negative affective reaction to receiving the information. Our data suggest that a video message can effectively communicate information about cascade genetic testing to potential relatives with as little as two minutes of content. Our data suggest that video messaging to assist family communication is a reasonable approach that increases understanding and is unlikely to cause harm.

Understanding Risk Information Seeking and Processing during an Infectious Disease Outbreak: The Case of Zika Virus.

This study draws on the Planned Risk Information Seeking Model (PRISM) to assess Zika virus information seeking and systematic processing, paying particular attention to the relationship between perceived knowledge and knowledge insufficiency. Novel risks, such as Zika, provide an interesting context for examining whether information-seeking models, such as PRISM, are able to predict information seeking when available information is limited or scarce. A cross-sectional, online study of men and women of childbearing age (N = 494) residing in the state of Florida was conducted. Our results provide some support for the PRISM for predicting Zika information seeking intention, as well as systematic processing of information. We also found that individuals with high levels of perceived knowledge were more likely to report high level of knowledge insufficiency, illustrating that contextual factors may impact the fit of risk information seeking models.

Race/Ethnic Variations in Predictors of Health Consciousness Within the Cancer Prevention Context.

PURPOSE: Although the literature establishes a link between health consciousness (HC) and prevention behavior, less explored are the individual, social, and health characteristics that are associated with increased HC. Similarly, underexamined is the influence of race and ethnicity on the relationship of these characteristics to higher levels of HC. DESIGN: This cross-sectional study aims to identify and assess the relative importance of factors associated with higher levels of HC, highlighting the role of race and ethnicity. PARTICIPANTS: Participants came from a national research panel survey (N = 1007). MEASURES: Participants completed a 4-item scale capturing key concepts of HC as well as questionnaires capturing demographic profiles, social support, social networking activities, and health status. ANALYSIS: A stepwise multiple regression was used to identify significant predictors of HC. RESULTS: Female and more educated participants report higher levels of HC. African American and Hispanic participants report higher levels of HC compared to white participants. Findings indicate social support, social network participation, education, cancer survivorship, and health status were positively associated with higher HC for the collective sample. However, results revealed variations in factors associated with higher HC when stratified by race/ethnicity. CONCLUSION: Findings suggest that interventions aiming to motivate cancer prevention behaviors within at-risk communities may find more success by incorporating factors that are aligned with increased HC among culturally diverse populations.

Hypertrophic cardiomyopathy genetic test reports: A qualitative study of patient understanding of uninformative genetic test results.

Studies have shown that patients with hypertrophic cardiomyopathy (HCM) may misinterpret the meaning of uninformative genetic testing results to mean that a genetic etiology and family members' risk is ruled out. We hypothesized that poor comprehension of the laboratory genetic test report may contribute to this misunderstanding. We conducted a qualitative study to examine patient understanding of uninformative laboratory results and reports and elicit suggestions for an improved report. Fifteen participants with HCM were interviewed after undergoing genetic testing and receiving their report. While all patients read the report, most participants reported only partially reading it. Most reported not understanding the report at all or only partially understanding it because a provider explained it to them. Some participants said that the report was helpful for understanding their result, but there was evidence of misunderstanding; most participants stated that specific aspects of the report were unhelpful. While most of our participants communicated risk with relatives, none said that the report helped with the communication. Most participants did not recall or find the accompanying physician-directed result letter useful for their understanding or familial communication. Many participants expressed need for a supplemental report that illustrates a personalized clinical 'action plan' that could summarize clinical and familial implications of the result for the patient and their family. We conclude that laboratory reports and physician-directed result letters did not help participants understand their results or their familial implications. Our results suggest opportunities for research to explore the utility of a patient-directed result supplement to improve patient comprehension of genetic test results and outline clinical recommendations via a patient action plan.

Understanding BRCA Mutation Carriers' Preferences for Communication of Genetic Modifiers of Breast Cancer Risk.

Refined estimates of risk based on genetic risk modifiers could assist BRCA mutation carriers in understanding their risk, but it is not clear whether carriers are interested in receiving these estimates or how they might benefit from them. Using qualitative interviews, we investigated female BRCA1 and BRCA2 mutation carriers' (N = 20) reactions to numerical and verbal presentations of breast cancer risk based on risk modifiers and assessed women's preferences regarding visual formats for communicating risk. Our results show carriers are interested in receiving refined risk estimates and suggest the estimates may influence decision-making regarding cancer prevention, depending on the nature of the risk assessment. Although accurate and precise estimates of breast cancer risk are most important to women, they preferred quantitative risk estimates expressed as a proportion with or without a population comparison; however, women noted that comparisons to other BRCA mutation carriers were less useful given their high risk. Participants also preferred communication of a risk as a specific percentage versus a range of risk, but a clear preference regarding visual displays was not expressed. Results support many existing recommendations for genetic risk communication and provide guidance for the development of tools incorporating genetic risk modifiers.

Exploring genetic counselors' perceptions of usefulness and intentions to use refined risk models in clinical care based on the Technology Acceptance Model (TAM).

Pathogenic germline mutations in the BRCA1 or BRCA2 genes are associated with an elevated lifetime risk for breast (50%-85% risk) and ovarian cancer (20%-40% risk). Genome-wide association studies have identified over 100 genetic variants associated with modified breast and/or ovarian cancer risk in BRCA1 and BRCA2 carriers. Risk models generated based on these variants have shown that these genetic modifiers strongly influence absolute risk of developing breast or ovarian cancer in BRCA mutation carriers. There is a lack of understanding, however, about the clinical applicability and utility of these risk models. To investigate this gap, we collected survey data from 274 cancer genetic counselors (GCs) through the National Society of Genetic Counselors Cancer Special Interest Group. Questions assessed perceptions of usefulness and intentions of genetic counselors to use these refined risk models in clinical care based on the Technology Acceptance Model (TAM). We found that GCs' reactions to the estimates were largely positive, though they thought the possibility of changing management based on results was unlikely. Additionally, we found that more experienced GCs were more likely to consider refined risk estimates in clinic. Support also was provided for core predictions within the TAM, whereby the perceived usefulness (indirect effect est. = 0.08, 95% CI: [0.04, 0.13]) and perceived ease of use (indirect effect est. = 0.078, 95% CI: [0.04, 0.13]) of refined risk estimates were indirectly associated with intentions to use via attitudes.

"Consent is sexy": A poster campaign using sex-positive images and messages to increase dyadic sexual communication.

Objective: "Consent is Sexy" (CIS) is a poster campaign incorporating sex-positive messages to promote consent and increase sexual communication among college students. We assess reactions to the campaign and associations between campaign recall and communication attitudes and behaviors. Participants: Male and female undergraduates at a Midwestern university were recruited (N = 284). Methods: A cross-sectional survey was conducted. t-Tests, logistic and multiple linear regressions were used to analyze the data. Results: Over half (56%) of participants recalled the campaign and reactions were positive. Students who recalled CIS had more positive attitudes towards sexual communication (p = .04) and greater perceived behavioral control (PBC; p < .01). Conclusions: Results show many students paid attention and reacted positively to CIS posters and results offer dissemination insights. Consent campaigns should continue to cultivate positive attitudes and PBC in regards to sexual communication.

How Online Family History Tool Design and Message Content Impact User Perceptions: An Examination of Family HealthLink.

BACKGROUND: Family health history tools have the ability to improve health outcomes and promote patient-provider communication, but some research suggests their effectiveness is limited. Tool design features may heavily influence users' perceptions of the tools. AIMS: This study provides a summative evaluation of the Family HealthLink tool, which assesses cancer and coronary heart disease risk based on personal and family health history, to better understand how tool design and message content impact user perceptions. METHOD: User observations and semi-structured interviews were conducted with breast cancer patients (n = 16) and support persons (n = 18) at an academic comprehensive breast center. RESULTS: The users responded positively to many of Family HealthLink's features, but they noted that it lacked a modern design. The participants felt much of the risk information was too generic and did not account for lifestyle factors. The users also did not consistently interpret the qualitative risk assessments provided by Family HealthLink. CONCLUSION: Our data analysis suggests that certain aspects of the Family HealthLink tool could be executed more effectively to take fuller advantage of opportunities for online personalization.