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.

Narratives and Mental Illness: Understanding the Factors That Impact Stigmatizing Attitudes and Behavioral Intentions.

Entertainment television has been explored to reduce stigmatizing attitudes toward mental illness by incorporating positive stories about characters with mental illness. Guided by mediated contact theory and the extended elaboration likelihood model, this study examines whether exposure and engagement with entertainment narratives, featuring characters with mental illnesses of varying levels of public stigma, impacts stigmatizing attitudes and intentions to interact with individuals with mental illness generally. Participants (n = 234) were randomized to one of the three conditions: (1) a more stigmatized mental illness (schizophrenia), (2) a less stigmatized mental illness (depression), or (3) a non-mental illness control (cancer). Participants in the more stigmatized condition reported significantly less identification with characters than those in the less stigmatized condition, and greater identification with the characters were associated with more positive attitudes and behavioral intentions. Narrative counterarguing was associated with less positive attitudes and intentions toward people with mental illness. Implications based on these findings include identifying ways to increase engagement with less familiar mental illnesses to optimize the positive outcomes associated with narrative engagement.

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.

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.

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 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.

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.

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.

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.

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.

Involvement and Influence of Healthcare Providers, Family Members, and Other Mutation Carriers in the Cancer Risk Management Decision-Making Process of BRCA1 and BRCA2 Mutation Carriers.

Deciding between increased cancer screening or prophylactic surgery and the timing of such procedures can be a difficult and complex process for women with BRCA mutations. There are gaps in our understanding of involvement of others in the decision-making process for women with BRCA mutations. This study evaluated the management decision-making process of women with BRCA mutations, focusing on the involvement of others. Grounded theory was used to analyze and code risk management decision-making information from interviews with 20 BRCA mutation carriers. Unaffected at-risk participants with a BRCA mutation, those under age 40, and those with no children described having a difficult time making risk management decisions. Physicians were an integral part of the decision-making process by providing decisional support and management recommendations. Family members and other mutation carriers filled similar yet distinct roles by providing experiential information as well as decisional and emotional support for carriers. Participants described genetic counselors as short-term providers of risk information and management recommendations. The study findings suggest that unaffected at-risk women, women under 40, and those who do not have children may benefit from additional support and information during the decision-making process. Genetic counselors are well trained to help women through this process and connect them with resources, and may be under-utilized in long-term follow-up for women with a BRCA mutation.

Operationalizing the Reciprocal Engagement Model of Genetic Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling and Testing.

With the advent of widespread genomic testing for diagnostic indications and disease risk assessment, there is increased need to optimize genetic counseling services to support the scalable delivery of precision medicine. Here, we describe how we operationalized the reciprocal engagement model of genetic counseling practice to develop a framework of counseling components and strategies for the delivery of genomic results. This framework was constructed based upon qualitative research with patients receiving genomic counseling following online receipt of potentially actionable complex disease and pharmacogenomics reports. Consultation with a transdisciplinary group of investigators, including practicing genetic counselors, was sought to ensure broad scope and applicability of these strategies for use with any large-scale genomic testing effort. We preserve the provision of pre-test education and informed consent as established in Mendelian/single-gene disease genetic counseling practice. Following receipt of genomic results, patients are afforded the opportunity to tailor the counseling agenda by selecting the specific test results they wish to discuss, specifying questions for discussion, and indicating their preference for counseling modality. The genetic counselor uses these patient preferences to set the genomic counseling session and to personalize result communication and risk reduction recommendations. Tailored visual aids and result summary reports divide areas of risk (genetic variant, family history, lifestyle) for each disease to facilitate discussion of multiple disease risks. Post-counseling, session summary reports are actively routed to both the patient and their physician team to encourage review and follow-up. Given the breadth of genomic information potentially resulting from genomic testing, this framework is put forth as a starting point to meet the need for scalable genetic counseling services in the delivery of precision medicine.

A Schema of Denial: The Influence of Rape Myth Acceptance on Beliefs, Attitudes, and Processing of Affirmative Consent Campaign Messages.

This study aims to examine the influence of rape myth acceptance (RMA) and the perceived salience of sexual violence on the cognitive processing of an affirmative consent campaign active on the campus where research was conducted. As part of a midcourse evaluation of the Consent is Sexy (CIS) campaign (N = 285), a subsample of participants who reported prior exposure to campaign posters (N = 182) was asked to review four campaign posters and indicate the extent to which they processed the message in the posters systematically. Robust gender differences in perceived salience of sexual violence, supportive attitudes, and perceived behavioral control (PBC) toward establishing consent were mediated by RMA. Moreover, robust gender differences in the systematic processing of the campaign were mediated by RMA and perceived salience in serial. Implications of the influence of rape myths and perceived salience on the cognitive processing of affirmed consent campaigns are discussed with respect to both campaign message design and implementation.

Understanding Associations between Information Seeking and Scanning and Health Risk Behaviors: An Early Test of the Structural Influence Model.

This study examined proposed direct and mediating relationships in the Structural Influence Model (SIM) of Communication within the chronic disease context. Using data from the Annenberg National Health Communication Survey (N = 14,472), we tested the potential mediating roles of information seeking, information scanning, and social capital between social determinants of health and four chronic disease risk behaviors: exercise level, fruit and vegetable intake, cigarette smoking, and excessive alcohol use. Information seeking, information scanning, and social capital received support as potential mediators. Our results are largely consistent with predictions of the SIM and highlight the important role of communication in reducing health risks and increasing healthy behaviors.

Outcomes of a Randomized Controlled Trial of Genomic Counseling for Patients Receiving Personalized and Actionable Complex Disease Reports.

There has been very limited study of patients with chronic disease receiving potentially actionable genomic based results or the utilization of genetic counselors in the online result delivery process. We conducted a randomized controlled trial on 199 patients with chronic disease each receiving eight personalized and actionable complex disease reports online. Primary study aims were to assess the impact of in-person genomic counseling on 1) causal attribution of disease risk, 2) personal awareness of disease risk, and 3) perceived risk of developing a particular disease. Of 98 intervention arm participants (mean age = 57.8; 39% female) randomized for in-person genomic counseling, 76 (78%) were seen. In contrast, control arm participants (n = 101; mean age = 58.5; 54% female) were initially not offered genomic counseling as part of the study protocol but were able to access in-person genomic counseling, if they requested it, 3-months post viewing of at least one test report and post-completion of the study-specific follow-up survey. A total of 64 intervention arm and 59 control arm participants completed follow-up survey measures. We found that participants receiving in-person genomic counseling had enhanced objective understanding of the genetic variant risk contribution for multiple complex diseases. Genomic counseling was associated with lowered participant causal beliefs in genetic influence across all eight diseases, compared to control participants. Our findings also illustrate that for the majority of diseases under study, intervention arm participants believed they knew their genetic risk status better than control arm subjects. Disease risk was modified for the majority during genomic counseling, due to the assessment of more comprehensive family history. In conclusion, for patients receiving personalized and actionable genomic results through a web portal, genomic counseling enhanced their objective understanding of the genetic variant risk contribution to multiple common diseases. These results support the development of additional genomic counseling interventions to ensure a high level of patient comprehension and improve patient-centered health outcomes.

Counselees' Perspectives of Genomic Counseling Following Online Receipt of Multiple Actionable Complex Disease and Pharmacogenomic Results: a Qualitative Research Study.

Genomic applications raise multiple challenges including the optimization of genomic counseling (GC) services as part of the results delivery process. More information on patients' motivations, preferences, and informational needs are essential to guide the development of new, more efficient practice delivery models that capitalize on the existing strengths of a limited genetic counseling workforce. Semi-structured telephone interviews were conducted with a subset of counselees from the Coriell Personalized Medicine Collaborative following online receipt of multiple personalized genomic test reports. Participants previously had either in-person GC (chronic disease cohort, n = 20; mean age 60 years) or telephone GC (community cohort, n = 31; mean age 46.8 years). Transcripts were analyzed using a Grounded Theory framework. Major themes that emerged from the interviews include 1) primary reasons for seeking GC were to clarify results, put results into perspective relative to other health-related concerns, and to receive personalized recommendations; 2) there is need for a more participant driven approach in terms of mode of GC communication (in-person, phone, video), and refining the counseling agenda pre-session; and 3) there was strong interest in the option of follow up GC. By clarifying counselees' expectations, views and desired outcomes, we have uncovered a need for a more participant-driven GC model when potentially actionable genomic results are received online.

User Perceptions and Reactions to an Online Cancer Risk Assessment Tool: a Process Evaluation of Cancer Risk Check.

Online cancer risk assessment tools, which provide personalized cancer information and recommendations based on personal data input by users, are a promising cancer education approach; however, few tools have been evaluated. A randomized controlled study was conducted to compare user impressions of one tool, Cancer Risk Check (CRC), to non-personalized educational information delivered online as series of self-advancing slides (the control). CRC users (N = 1452) rated the tool to be as interesting as the control (p > .05), but users were more likely to report that the information was difficult to understand and not applicable to them (p < .05). Information seeking and sharing also were lower among CRC users; thus, although impressions of CRC were favorable, it was not shown to be superior to existing approaches. We hypothesized CRC was less effective because it contained few visual and graphical elements; therefore, CRC was compared to a text-based control (online PDF file) post hoc. CRC users rated the information to be more interesting, less difficult to understand, and better able to hold their attention (p < .05). Post hoc results suggest the visual presentation of risk is critical to tool success.