Assessing the acceptability and appropriateness of a psychoeducational graphic novel about inherited cancer risk designed for men.

Men with germline pathogenic variants in BRCA1 or BRCA2 genes are at an increased lifetime risk for developing breast cancer, prostate cancer, and pancreatic cancer. Men report that managing clinical care is challenging because they are under-informed about their cancer risks. As the demand for genetic testing has increased, so too has the need to relay accurate and relatable genetic health information. This research developed and assessed the acceptability and appropriateness of a psychoeducational graphic novel designed for men to improve their cancer risk knowledge, manage their cancer-related uncertainty, and increase their intent to disclose their BRCA1/2 risks to family members and healthcare providers. Through purposive and snowball sampling, men (n = 20) and certified genetic counselors (CGCs; n = 15) participated in semi-structured interviews assessing the acceptability and appropriateness of the graphic novel. Interviews were audio-recorded, transcribed, and thematically analyzed. Both reported that the graphic novel confirmed risk information provided helpful resources, included relatable storylines, and had a unique visual appeal. Some men remained unsure about how to perform recommended screenings and how to talk to family members, particularly children, about BRCA1/2 test results after assessing the graphic novel. CGCs also discussed the helpfulness of the graphic novel for their practice. Given that this psychoeducational graphic novel was appealing to men and CGCs, it shows promise as an acceptable approach that may assist men in managing their cancer risks and communicating their genetic risk information to family members and healthcare providers.

Tele-Oncology Use During the COVID-19 Pandemic: Patient Experiences and Communication Behaviors with Clinicians.

Background: Tele-oncology became a widely used tool during the COVID-19 pandemic, but there was limited understanding of how patient-clinician communication occurred using the technology. Our goal was to identify how communication transpired during tele-oncology consultations compared with in-person appointments. Methods: A convergent parallel mixed-method design was utilized for the web-based survey, and follow-up interviews were conducted with cancer patients from March to December 2020. Participants were recruited from the University of Florida Health Cancer Center and two national cancer organizations. During the survey, participants rated their clinician's patient-centered communication behaviors. Open-ended survey responses and interview data were combined and analyzed thematically using the constant comparative method. Results: A total of 158 participants completed the survey, and 33 completed an interview. Ages ranged from 19 to 88 years (mean = 64.2; standard deviation = 13.0); 53.2% identified as female and 44.9% as male. The majority of respondents (76%) considered communication in tele-oncology equal to in-person visits. Preferences for tele-oncology included the ability to get information from the clinician, with 13.5% rating tele-oncology as better than in-person appointments. Tele-oncology was considered worse than in-person appointments for eye contact (n = 21, 12.4%) and virtual waiting room times (n = 50, 29.4%). The following qualitative themes corresponded with several quantitative variables: (1) commensurate to in-person appointments, (2) uncertainty with the digital platform, (3) lack of a personal connection, and (4) enhanced patient experience. Conclusion: Patient-centered communication behaviors were mostly viewed as equally prevalent during tele-oncology and in-person appointments. Addressing the challenges of tele-oncology is necessary to improve the patient experience.

Understanding parents uncertainty sources and management strategies while caring for a child diagnosed with a hematologic cancer.

Rationale: Parents of a child or adolescent (CA) or young adult (YA) diagnosed with a hematologic cancer often face uncertainty. Managing uncertainty is critical to reduce the psychosocial burden of illness-related stressors. Objective: This study sought to identify: 1) sources of uncertainty among parents of a child diagnosed with a hematologic cancer, 2) strategies used by parents to manage uncertainty, and 3) clinicians' responses to parents' online information-seeking approach to managing uncertainty. Methods: Parents of CAs/YAs diagnosed with a hematologic cancer within the past 1-18 months and living in the U.S. participated in an in-depth, semi-structured phone interview (n = 20). Data were analyzed thematically. Results: Parents reported uncertainty about treatment (options, efficacy, and side effects or risks) and uncertainty about the future (recurrence, whether worry would subside, and how to approach the child's future). Parents managed uncertainty by seeking information online, talking to clinicians, and joining support groups. Clinicians' responses to online information-seeking were described as supportive and unsupportive. Conclusion: Parents described struggling with uncertainty across the cancer continuum (from primary treatment to survivorship). Parents' psychosocial health may benefit from individual and systems level interventions that help address and manage uncertainty, especially interventions focusing on parent caregiver-clinician communication.

Young Adult Caregiving Daughters and Diagnosed Mothers Navigating Breast Cancer Together: Open and Avoidant Communication and Psychosocial Outcomes.

For many diagnosed mothers and their daughters, breast cancer is a shared experience. However, they struggle to talk about cancer. This is particularly true when the daughter is in adolescence or young adulthood, as they tend to be more avoidant, which is associated with poorer biopsychosocial outcomes. When daughters are their mother's caregivers, daughters' burden and distress are heightened. Young adult caregiving daughters (YACDs) are the second most common family caregiver and encounter more distress and burden than other caregiver types. Yet, YACDs and their diagnosed mothers receive no guidance on how to talk about cancer. Thirty-nine mother/YACD pairs participated in an online survey to identify challenging topics and strategies for talking about cancer, and to explore associations between openness/avoidance and psychosocial outcomes. YACDs and mothers reported the same challenging topics (death, treatment-related issues, negative emotions, relational challenges, YACDs' disease risk) but differed on why they avoided the topic. YACDs and mothers identified the same helpful approaches to navigate conversations (openness, staying positive, third-party involvement, avoidance). Avoidance was correlated with more distress whereas openness was correlated with better psychosocial outcomes. These results provide a psychosocial map for a mother-YACD communication skills intervention, which is key to promoting healthy outcomes.

Optimizing communication strategies and designing a comprehensive program to facilitate cascade testing for familial hypercholesterolemia.

BACKGROUND: This project aimed to optimize communication strategies to support family communication about familial hypercholesterolemia (FH) and improve cascade testing uptake among at-risk relatives. Individuals and families with FH provided feedback on multiple strategies including: a family letter, digital tools, and direct contact. METHODS: Feedback from participants was collected via dyadic interviews (n = 11) and surveys (n = 98) on communication strategies and their proposed implementation to improve cascade testing uptake. We conducted a thematic analysis to identify how to optimize each strategy. We categorized optimizations and their implementation within the project's healthcare system using a Traffic Light approach. RESULTS: Thematic analysis resulted in four distinct suggested optimizations for each communication strategy and seven suggested optimizations that were suitable across all strategies. Four suggestions for developing a comprehensive cascade testing program, which would offer all optimized communication strategies also emerged. All optimized suggestions coded green (n = 21) were incorporated. Suggestions coded yellow (n = 12) were partially incorporated. Only two suggestions were coded red and could not be incorporated. CONCLUSIONS: This project demonstrates how to collect and analyze stakeholder feedback for program design. We identified feasible suggested optimizations, resulting in communication strategies that are patient-informed and patient-centered. Optimized strategies were implemented in a comprehensive cascade testing program.

Improving Clinical and Family Communication for Adult Child Caregivers of a Parent With a Blood Cancer: Single-Arm Pre-Post Pilot Intervention.

BACKGROUND: Adult child caregivers of parents with cancer may face challenges when communicating with the patient and other family members, communicating during clinical interactions, and navigating web-based information seeking. OBJECTIVE: We developed and pilot-tested the Healthy Communication Practice program for adult child caregivers of parents with a blood cancer, which aims to help participants learn and implement communication skills central to caregiving. We assessed the feasibility and acceptability of the training. METHODS: Eligible participants completed a preprogram survey. We assessed the feasibility of participants completing the intervention in the allotted time. Participants had 2 weeks to complete the 2-part, 90-minute online program and completed a postprogram survey that included program evaluation items and the Acceptability of Intervention Measure (AIM) using a 1-5 rating scale (5=strongly agree). RESULTS: Of 50 caregivers who initially expressed interest, 34 consented, and 30 completed the program and both surveys (88% completion rate). Caregivers had a mean age of 45.07 (SD 11.96) years and provided care for parents who had a mean age of 73.31 (SD 9.38) years. Caregivers were primarily daughters (n=22, 73%). Overall, scores on the AIM scale were high (mean 4.48, SD 0.67). Specifically, caregivers felt the content met their communication needs (mean 4.58, SD 0.62) and their own needs as a caregiver of a parent with a blood cancer (mean 4.39, SD 0.72). CONCLUSIONS: We demonstrated the feasibility and acceptability of the Healthy Communication Practice program, which aims to enhance family and clinical communication skills among caregivers of a parent with a blood cancer. Future studies will examine the efficacy of the program and its impact on both caregiver and patient communication and health outcomes.

Cancer patients' satisfaction with telehealth during the COVID-19 pandemic.

OBJECTIVE: To examine factors associated with cancer patients' satisfaction using telehealth during COVID-19, including video conferencing platforms and secure messaging systems. METHOD: Patients with cancer participated in a cross-sectional, web-based survey was conducted with patients with cancer. The survey included questions about satisfaction with video-conferencing and secure messaging platforms to interact with clinicians during the COVID-19 pandemic. Logistic regression analyses were conducted to examine predictors of satisfaction for each telehealth platform. RESULTS: Participants generally reported positive satisfaction with each telehealth platform. Both platforms were commonly used to review medical results and discuss symptoms or treatment. Participants identifying as a man were most satisfied with their video-conferencing session, especially if they had a comfortable place to sit. Patients were more satisfied with secure messaging because they could ask a question without scheduling an appointment. DISCUSSION: When strategically used together, video-conferencing platforms and secure messaging may increase patient satisfaction in cancer care during the remainder of the pandemic and beyond. Attention must be paid to optimizing factors that promote satisfaction for each telehealth platform.

Managing Uncertainty for and With Family: Communication Strategies and Motivations in Familial Uncertainty Management for Hereditary Cancer.

The management of uncertainty is integral to health and illness. Individuals manage uncertainty about their health through communication enmeshed in family systems, but existing theorizing focuses on individuals without accounting for family processes. An iterative qualitative analysis of 42 dyadic, family interviews (N = 84) revealed (a) moments in the context of hereditary cancer that involved individual-centered and familial uncertainty appraisal and management, (b) family members' communication strategies to prompt relatives to engage familial uncertainty, and (c) the communicative (re)creation and negotiation of family models for uncertainty management. The findings illuminate tensions that individuals encounter across their lifespan as they appraise and manage uncertainty about hereditary cancer risks. This study extends uncertainty management theory to encompass familial uncertainty management and contributes insights useful for the management of hereditary cancer.

Motivating cascade testing for familial hypercholesterolemia: applying the extended parallel process model for clinician communication.

Motivating at-risk relatives to undergo cascade testing for familial hypercholesterolemia (FH) is critical for diagnosis and lifesaving treatment. As credible sources of information, clinicians can assist in family communication about FH and motivate cascade testing uptake. However, there are no guidelines regarding how clinicians should effectively communicate with probands (the first person diagnosed in the family) and at-risk relatives. Individuals and families with FH can inform our understanding of the most effective communications to promote cascade testing. Guided by the extended parallel process model (EPPM), we analyzed the perspectives of individuals and families with FH for effective messaging clinicians can use to promote cascade testing uptake. We analyzed narrative data from interviews and surveys collected as part of a larger mixed-methods study. The EPPM was used to identify message features recommended by individuals and families with FH that focus on four key constructs (severity, susceptibility, response efficacy, self-efficacy) to promote cascade testing. Participants included 22 individuals from 11 dyadic interviews and 98 survey respondents. Participants described prioritizing multiple messages that address each EPPM construct to alert relatives about their risk. They illustrated strategies clinicians could use within each EPPM construct to communicate to at-risk relatives about the importance of pursuing diagnosis via cascade testing and subsequent treatment for high cholesterol due to FH. Findings provide guidance on effective messaging to motivate cascade testing uptake for FH and demonstrates how the EPPM may guide communication with at-risk relatives about genetic risk and motivate cascade testing broadly.

Impact of the family communication environment on burden and clinical communication in blood cancer caregiving.

OBJECTIVE: We examined the effects of the family communication environment (conversation orientation) on adult child caregivers' burden and clinical interactions and if the effects are mediated by openness to communicate about cancer, avoidant cancer communication, and social support (SS). METHOD: Caregivers of a parent diagnosed with a blood cancer (N = 121) completed an online survey of validated measures of conversation orientation (i.e., the extent to which families openly communicate), SS, cancer openness, avoidance, caregiver burden, clinical communication skills, and quality of clinical interactions (QCI). RESULTS: Conversation orientation had significant indirect effects on caregiver burden, mediated by SS (ß = -0.11, p < 0.001), as well as cancer openness and avoidance (ß = -0.07, p < 0.001). Conversation orientation also had significant indirect effects on caregivers' communication skills with a parent's clinician, mediated by avoidance (ß = 0.08, p < 0.01) and SS (ß = 0.06, p < 0.001). Finally, conversation orientation had significant indirect effects on caregivers' QCI mediated by avoidance (ß = 0.71, p < 0.05). CONCLUSIONS: Adult child caregivers whose families communicate more openly exhibit less caregiver burden and report better clinical interaction skills and perceived quality of the clinical interaction. Avoidance emerged as a key mediating factor. Caregivers from less open communication environments may benefit from interventions that help them navigate challenging but critical caregiving conversations.

Secure Messaging and COVID-19: A Content Analysis of Patient-Clinician Communication During the Pandemic.

Background: Coronavirus disease 2019 (COVID-19) immediately impacted patient-clinician communication, particularly in the oncology setting. Relatedly, secure messaging (SM) usage greatly increased, yet it is unknown what was discussed and whether the technology was utilized to disseminate information. Aims: This study aimed at identifying the most frequently discussed topics using SM as well as at understanding how the communication process transpired during the early stages of the pandemic. Materials and Methods: A mixed-methods design was utilized, consisting of a content analysis of more than 4,200 secure messages, aggregated into 1,454 patient-clinician discussions. Data were collected from February 2020 to May 2020. Discussions were from various oncology departments and included physicians, physician assistants, and nurses. Based on the identified categories, a thematic analysis was conducted to understand the nuances occurring within discussions. Results: Out of the 1,454 discussions, 26% (n = 373) related to COVID-19. Of the COVID-19 discussion, the most frequently coded category was "changes, adjustments, and re-arranging care" (65%, n = 241), followed by "risk for COVID-19" (24%, n = 90), "precautions inside the hospital" (18%, n = 66), and "precautions outside the hospital" (14%, n = 52). Natural language processing techniques were used to confirm the validity of the results. Thematic analysis revealed that patients were proactive in rescheduling appointments, expressed anxiety about being immunocompromised, and clinicians were uncertain about providing recommendations related to COVID-19. Conclusions: The COVID-19 outbreak revealed the need for responsive and effective public health communication. The SM can disseminate information from trusted sources, clinicians, but can be better utilized to deliver tailored information for specific patient populations.

Acceptability, Appropriateness, and Feasibility of Automated Screening Approaches and Family Communication Methods for Identification of Familial Hypercholesterolemia: Stakeholder Engagement Results from the IMPACT-FH Study.

Guided by the Conceptual Model of Implementation Research, we explored the acceptability, appropriateness, and feasibility of: (1) automated screening approaches utilizing existing health data to identify those who require subsequent diagnostic evaluation for familial hypercholesterolemia (FH) and (2) family communication methods including chatbots and direct contact to communicate information about inherited risk for FH. Focus groups were conducted with 22 individuals with FH (2 groups) and 20 clinicians (3 groups). These were recorded, transcribed, and analyzed using deductive (coded to implementation outcomes) and inductive (themes based on focus group discussions) methods. All stakeholders described these initiatives as: (1) acceptable and appropriate to identify individuals with FH and communicate risk with at-risk relatives; and (2) feasible to implement in current practice. Stakeholders cited current initiatives, outside of FH (e.g., pneumonia protocols, colon cancer and breast cancer screenings), that gave them confidence for successful implementation. Stakeholders described perceived obstacles, such as nonfamiliarity with FH, that could hinder implementation and potential solutions to improve systematic uptake of these initiatives. Automated health data screening, chatbots, and direct contact approaches may be useful for patients and clinicians to improve FH diagnosis and cascade screening.

Developing and Optimizing Innovative Tools to Address Familial Hypercholesterolemia Underdiagnosis: Identification Methods, Patient Activation, and Cascade Testing for Familial Hypercholesterolemia.

BACKGROUND: Familial hypercholesterolemia (FH) is the most common cardiovascular genetic disorder and, if left untreated, is associated with increased risk of premature atherosclerotic cardiovascular disease, the leading cause of preventable death in the United States. Although FH is common, fatal, and treatable, it is underdiagnosed and undertreated due to a lack of systematic methods to identify individuals with FH and limited uptake of cascade testing. METHODS AND RESULTS: This mixed-method, multi-stage study will optimize, test, and implement innovative approaches for both FH identification and cascade testing in 3 aims. To improve identification of individuals with FH, in Aim 1, we will compare and refine automated phenotype-based and genomic approaches to identify individuals likely to have FH. To improve cascade testing uptake for at-risk individuals, in Aim 2, we will use a patient-centered design thinking process to optimize and develop novel, active family communication methods. Using a prospective, observational pragmatic trial, we will assess uptake and effectiveness of each family communication method on cascade testing. Guided by an implementation science framework, in Aim 3, we will develop a comprehensive guide to identify individuals with FH. Using the Conceptual Model for Implementation Research, we will evaluate implementation outcomes including feasibility, acceptability, and perceived sustainability as well as health outcomes related to the optimized methods and tools developed in Aims 1 and 2. CONCLUSIONS: Data generated from this study will address barriers and gaps in care related to underdiagnosis of FH by developing and optimizing tools to improve FH identification and cascade testing.

Uncertainty management for individuals with Lynch Syndrome: Identifying and responding to healthcare barriers.

OBJECTIVE: Examine the uncertainty management process of individuals with Lynch syndrome (LS). METHODS: 19 phone interviews were conducted with individuals with LS. The interview guide included questions on family communication, risk perceptions, and uncertainty management. Data were analyzed using the constant comparison method to code for emergent themes. RESULTS: Qualitative analysis found individuals with LS tried to manage their uncertainty through preventive care, but were often confounded by healthcare barriers. Healthcare barriers included cost and insurance issues, absence of coordinated care, insufficient provider knowledge, and lack of patient-centered communication. Participants reported increased uncertainty and anxiety due to these barriers and used alternative uncertainty management strategies such as advocating for themselves with providers, seeking information online, and communicating with family for emotional support. CONCLUSION: Healthcare barriers identified in this study exacerbated uncertainty and anxiety for individuals with LS and challenged their ability to engage in preventive care. In response, participants used alternative uncertainty management strategies to reduce their uncertainty, which may have unintended negative consequences. PRACTICE IMPLICATIONS: Findings support the need for providers to partner with specialists in genetics and/or LS to better care for individuals with LS. Findings highlight opportunities for interventions in healthcare to better support individuals with LS.

Engaging Men With BRCA-Related Cancer Risks: Practical Advice for BRCA Risk Management From Male Stakeholders.

Men are at risk for developing hereditary cancers such as breast, prostate, pancreatic, and melanoma due to a pathogenic germline variant in either the BRCA1 or BRCA2 gene. The purpose of this study was to identify and provide practical advice for men managing their BRCA-related cancer risks based on men's real-life experiences. Semistructured interviews were conducted with 25 men who either tested positive for a pathogenic variant in BRCA1/2 gene or who had an immediate family member who had tested positive for a pathogenic variant in BRCA1/2. A thematic analysis of the interview transcripts was completed utilizing the constant comparison method. Qualitative analysis produced three categories of participant advice for men who recently learned of their hereditary cancer risk. Specifically, participants advised the following: (a) know the basics, (b) engage in the family narrative, and (c) advocate for yourself. Results showed the need for men to know and understand their BRCA cancer risks and communicate that genetic risk information to their family members and practitioners. In particular, the findings stress the importance of addressing men's risks and medical management from a family-focused approach. Overall, because men are historically undereducated about their BRCA-related cancer risks, this practical advice serves as a first step for men managing BRCA-related cancer risks and may ultimately assist them in making preventive and screening health behaviors.

Family storytelling about hereditary cancer: Framing shared understandings of risk.

Family communication about the family's health history (FHH) is an important step in alerting individuals to their hereditary disease risks and facilitating prevention. Individuals often communicate about the FHH of hereditary cancer as a story, which highlights the importance of analyzing family narratives of hereditary cancer to better understand their relation to psychological and physical well-being. This study investigates the content of family stories by examining how narrative tone and framing relate to coping, perceptions of risk, and medical decision-making. The current study recruited 42 family dyads with a prevalent FHH of hereditary cancer to participate in dyadic phone interviews to jointly tell their family narrative of hereditary cancer. Using an iterative analysis, findings examine how families create a shared understanding of FHH and hereditary risk. Narrative tone reflects participants' psychological well-being and contributed to the way families framed their experiences. Common frames to family narratives of hereditary cancer included empowerment, adversity, laissez faire, and discrepant. Each frame gave insight into how families were coping, their perceptions of risk, and how they make medical decisions to manage those risks. Developing a better understanding of how families communicate about their hereditary cancer risks can aid in designing clinical interventions to help families re-frame their stories to promote improved health outcomes.

"How do we rally around the one who was positive?" Familial uncertainty management in the context of men managing BRCA-related cancer risks.

RATIONALE: Men with BRCA-related cancer risks face increased disease risk as well as the prospect of passing on their risk to children. OBJECTIVE: This study investigates men's communicative appraisal and management of uncertainty related to BRCA-related cancer risks and decision-making. METHODS: Guided by uncertainty management theory (UMT), a directed content analysis approach was utilized to analyze interviews with 25 men who either carry a pathogenic BRCA variant or have a 50% chance of carrying a variant but have not yet been tested. RESULTS: Participants appraised their individual uncertainty as irrelevant or dangerous but appraised their familial uncertainty as dangerous. Men appraising their uncertainty as a danger exhibited more proactive information seeking healthcare behaviors-such as genetic testing and following recommended screenings-than men who appraised their uncertainty as irrelevant. Participants appraised familial uncertainty as a danger and were engaged in information management with family members, as well as encouraging family members to engage in proactive healthcare decision-making. CONCLUSIONS: Men with BRCA-related cancer risks lack understanding about their risks and how to manage them. Increased attention should be paid to the development of interventions tailored specifically to men. Further, interventions focusing on strategically developing proactive family communication behaviors would also be beneficial to men and their families.

"I Am Uncertain About What My Uncertainty Even Is": Men's Uncertainty and Information Management of Their BRCA-Related Cancer Risks.

Men with a germline pathogenic BRCA1 or BRCA2 variant have increased risks for developing breast, pancreatic, prostate, and melanoma cancers, but little is known about how they understand and manage their cancer risks. This study examines how men with BRCA-related cancer risks manage uncertainty and information about their risks. Twenty-five men who were either a BRCA carrier or have a BRCA-positive first-degree family member that put the participant at 50% chance of also being a BRCA carrier were interviewed for this study. Using uncertainty management theory as a theoretical framework, this study demonstrates that men manage uncertainty by seeking information from female family members, websites, and healthcare providers, and are under-informed about their cancer risks. Further, in handling their information, men prefer information about cancer risk percentages and screening recommendations in the form of lists presented to them via websites, printed literature, proactive healthcare providers, and an identifiable male spokesperson. Finally, men used BRCA-related cancer risk information to make decisions about whether or not to engage in screening and prevention, manage their BRCA-related cancer risks, and overall family well-being-yet often at the expense of their own individual risks. Implications for genetic counseling and family conversations are discussed.