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Introduction: Previous research indicates that population genomic screening can benefit individuals who act on the genetic results. However, there remains a significant gap between individuals receiving genetic information and acting on current risk management recommendations, prompting exploration of interventions to close this gap. This study aimed to determine the feasibility and acceptability, and conduct a pilot implementation, of existing evidence-based interventions (EBIs) for adherence to disease management for select genetic conditions among individuals ascertained through a population genomic screening program., Methods: Surveys of and interviews with individuals who received a genomic screening result were conducted to assess barriers to guideline-recommended care and assess the acceptability of problem solving (PS) and motivational interviewing (MI) EBIs to facilitate adherence to recommendations. A Design Thinking Workshop was conducted with clinicians to co-develop a MI- and PS-based intervention that would fit with current workflows to be piloted. Post-pilot engagement sessions with implementers determined acceptability and feasibility of the MI/PS pilot program for clinical implementation and elicited proposed adaptations for improvement., Results: PS and MI EBIs were reported to be acceptable and feasible to individuals with a result, and barriers to performing recommended management were identified. The pilot program included outreach by genetic counselors to individuals with a result, review of a checklist of barriers, and delivery of PS or MI as appropriate to facilitate care. The protocol as piloted was deemed acceptable and feasible for clinicians to deliver, with adaptations suggested., Conclusion: These results will inform an effectiveness trial to address gaps in adherence in patients who have received actionable genomic results., (The Author(s). Published by S. Karger AG, Basel.)

Background: Relatives of probands diagnosed with familial hypercholesterolemia (FH) should undergo cascade testing for FH., Objectives: The purpose of this study was to evaluate probands' choices of innovative strategies to communicate their FH result with relatives and facilitate cascade testing uptake., Methods: Probands with an FH genetic result from the MyCode Community Health Initiative could choose to share their FH result with adult blood relatives via the Family and Healthcare Professional Packet (packet), family sharing and cascade chatbots (chatbot), and/or FH Outreach and Support Program (direct contact). Cascade testing uptake was measured as reported completion of genetic or cholesterol testing. Generalized estimating equations models were used to identify factors associated with testing., Results: One hundred seventy five probands received an FH result, median age was 58.9 (IQR: 44.9-69.3), and 58.9% were female. Probands shared information about 1,915 adult and 163 minor relatives (11.9 relatives per proband). Seventy percent of probands (121/175) selected at least one strategy for at least one adult relative. An average of 1.2 strategies was selected per adult relative. Cascade testing was completed for 26.6% (144/541) of adults with at least one strategy selected, 2.4% (33/1,374) of adults without a strategy selected, and 25.2% (41/163) of minor relatives. Factors associated with increased cascade testing uptake were selection of at least one strategy (6.32 higher odds), specifically, selection of direct contact (16.78 higher odds)., Conclusions: Strategies implemented improved FH cascade testing uptake compared to previous estimates and in families where no strategy was selected. Overall uptake remains insufficient, which can be attributed to probands reluctance to select a strategy for many relatives., Competing Interests: Dr Jones is a consultant for Novartis. Dr McGowan is on the advisory board for Novartis. Dr Gidding is a consultant for Esperion. Dr Sturm is an employee and stockholder in 23andMe; and on the advisory board for Nest Genomics. Research reported in this publication was supported by the 10.13039/100000050National Heart, Lung, And Blood Institute of the 10.13039/100000002National Institutes of Health under Award Number R01HL148246. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. All other authors have reported that they have no relationships relevant to the contents of this paper to disclose., (© 2024 The Authors.)

The IMPACT-FH study implemented strategies (packet, chatbot, direct contact) to promote family member cascade testing for familial hypercholesterolemia (FH). We evaluated the impact of genetic counseling (GC) on medical outcomes, strategy selection, and cascade testing. Probands (i.e., patients with FH) were recommended to complete GC and select sharing strategies. Comparisons were performed for both medical outcomes and strategy selection between probands with or without GC. GEE models for Poisson regression were used to examine the relationship between proband GC completion and first-degree relative (FDR) cascade testing. Overall, 46.3% (81/175) of probands completed GC. Probands with GC had a median LDL-C reduction of -13.0 mg/dL (-61.0, 4.0) versus -1.0 mg/dL (-16.0, 17.0) in probands without GC ( p = 0.0054). Probands with and without GC selected sharing strategies for 65.3% and 40.3% of FDRs, respectively ( p < 0.0001). Similarly, 27.1% of FDRs of probands with GC completed cascade testing, while 12.0% of FDRs of probands without GC completed testing ( p = 0.0043). Direct contact was selected for 47 relatives in total and completed for 39, leading to the detection of 18 relatives with FH. Proband GC was associated with improved medical outcomes and increased FDR cascade testing. Direct contact effectively identified FH cases for the subset who participated.

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., (© 2024 National Society of Genetic Counselors.)

Background: Cascade testing can be highly effective in identifying individuals with familial hypercholesterolemia (FH) and help prevent atherosclerotic cardiovascular disease. The IMPACT-FH cascade testing program offered multiple optimized implementation strategies to improve FH cascade testing uptake., Objective: Guided by the Conceptual Model of Implementation Research, this study assessed the IMPACT-FH cascade testing program's implementation outcomes., Methods: Implementation outcomes were assessed qualitatively and quantitatively. Interviews were conducted with 33 IMPACT-FH program participants including 15 probands, 12 relatives, and 6 healthcare professionals (HCPs). Transcripts were analyzed using thematic analysis to investigate implementation outcomes. Descriptive statistics were analyzed for scaled implementation outcome measures asked after interviews., Results: Participants described adopting strategies offered in the IMPACT-FH program because they presented an opportunity to pursue low-cost FH cascade testing. Participants identified barriers to feasibility including: the complexity of disclosing an FH result and offering strategies on, inherent limitations of probands choosing strategies, confusion over testing costs, limitations sharing with relatives' clinicians, discomfort with chatbot technology, and concerns about the workload for HCPs. Participants evaluated the program positively regarding its appropriateness (Mean (M) = 4.70, Standard Deviation (SD) = 0.41), acceptability (M = 4.79, SD = 0.40), and feasibility (M = 4.24, SD = 0.53)., Conclusion: The IMPACT-FH cascade testing program and its strategies were evaluated as valuable to adopt and highly appropriate, acceptable, and feasible by participants. Participants identified areas to enhance the program that could improve FH cascade testing uptake., (Copyright © 2024. Published by Elsevier Inc.)

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.

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., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2023 The Authors.)

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.

Introduction: Familial hypercholesterolemia (FH) is a common inherited cholesterol disorder that, without early intervention, leads to premature cardiovascular disease. Multilevel strategies that target all components of FH care including identification, cascade testing, and management are needed to address gaps that exist in FH care. We utilized intervention mapping, a systematic implementation science approach, to identify and match strategies to existing barriers and develop programs to improve FH care., Methods: Data were collected utilizing two methods: a scoping review of published literature, related to any component of FH care, and a parallel mixed method study using interviews and surveys. The scientific literature was searched using key words including "barriers" or "facilitators" and "familial hypercholesterolemia" from inception to December 1, 2021. The parallel mixed method study recruited individuals and families with FH to participate in either dyadic interviews ( N  = 11 dyads/22 individuals) or online surveys ( N  = 98 respondents). Data generated from the scoping review, dyadic interviews, and online surveys were used in the 6-step intervention mapping process. Steps 1-3 included a needs assessment, development of program outcomes and creation of evidence-based implementation strategies. Steps 4-6 included program development, implementation, and evaluation of implementation strategies., Results: In steps 1-3, a needs assessment found barriers to FH care included underdiagnosis of the condition which led to suboptimal management due to a myriad of determinants including knowledge gaps, negative attitudes, and risk misperceptions by individuals with FH and clinicians. Literature review highlighted barriers to FH care at the health system level, notably the relative lack of genetic testing resources and infrastructure needed to support FH diagnosis and treatment. Examples of strategies to overcome identified barriers included development of multidisciplinary care teams and educational programs. In steps 4-6, an NHLBI-funded study, the Collaborative Approach to Reach Everyone with FH (CARE-FH), deployed strategies that focused on improving identification of FH in primary care settings. The CARE-FH study is used as an example to describe program development, implementation, and evaluation techniques of implementation strategies., Conclusion: The development and deployment of evidence-based implementation strategies that address barriers to FH care are important next steps to improve identification, cascade testing, and management., Competing Interests: LJ is a consultant for Novartis Corporation. SG is a consultant for Esperion. AG has received research funding from Amgen, Sanofi, Novartis, Arrowhead, IONIS, Regeneron, New Amsterdam, Esperion, and Pfizer and is a consultant for IONIS, New Amsterdam, and Regeneron. AS is an employee and has stockholder in 23andMe and an Advisor to Nest Genomics. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (© 2023 Jones, Calvo, Campbell-Salome, Walters, Brangan, Rodriguez, Ahmed, Morgan, Gidding, Williams, Brownson, Seaton, Goldberg, Mcgowan, Rahm and Sturm.)

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., (© 2023. The Author(s).)

Objective: To assess use of two web-based conversational agents, the Family Sharing Chatbot (FSC) and One Month Chatbot (OMC), by individuals with familial hypercholesterolemia (FH)., Methods: FSC and OMC were sent using an opt-out methodology to a cohort of individuals receiving a FH genetic result. Data from 7/1/2021 through 5/12/2022 was obtained from the electronic health record and the chatbots' HIPAA-secure web portal., Results: Of 175 subjects, 21 (12%) opted out of the chatbots. Older individuals were more likely to opt out. Most (91/154, 59%) preferred receiving chatbots via the patient EHR portal. Seventy-five individuals (49%) clicked the FSC link, 62 (40%) interacted, and 36 (23%) shared a chatbot about their FH result with at least one relative. Ninety-two of the subjects received OMC, 22 (23%) clicked the link and 20 (21%) interacted. Individuals who shared were majority female and younger on average than the overall cohort. Reminders tended to increase engagement., Conclusion: Results demonstrate characteristics relevant to chatbot engagement. Individuals may be more inclined to receive chatbots if integrated within the patient EHR portal. Frequent reminders can potentially improve chatbot utilization., Innovation: FSC and OMC employ innovative digital health technology that can facilitate family communication about hereditary conditions., Competing Interests: The following authors have conflicts of interest to report: Tara J. Schmidlen and Sarah K. Savage are employees and shareholders of Invitae. Amy C. Sturm is an employee and shareholder of 23andMe. Laney K. Jones is a consultant for Novartis., (© 2023 The Authors.)

Background: The spread of unvetted scientific information about COVID-19 presents a significant challenge to public health, adding to the urgency for increased understanding of COVID-19 information-seeking preferences that will allow for the delivery of evidence-based health communication. This study examined factors associated with COVID-19 information-seeking behavior., Methods: An online survey was conducted with US adults (N = 1800) to identify key interpersonal (e.g., friends, health care providers) and mediated (e.g., TV, social media) sources of COVID-19 information. Logistic regression models were fitted to explore correlates of information-seeking., Results: Study findings show that the first sought and most trusted sources of COVID-19 information had different relationships with sociodemographic characteristics, perceived discrimination, and self-efficacy. Older adults had greater odds of seeking information from print materials (e.g., newspapers and magazines) and TV first. Participants with less educational attainment and greater self-efficacy preferred interpersonal sources first, with notably less preference for mass media compared to health care providers. Those with more experiences with discrimination were more likely to seek information from friends, relatives, and co-workers. Additionally, greater self-efficacy was related to increased trust in interpersonal sources., Conclusion: Study results have implications for tailoring health communication strategies to reach specific subgroups, including those more vulnerable to severe illness from COVID-19. A set of recommendations are provided to assist in campaign development., (© 2022. The Author(s).)

Genomic screening programs have potential to benefit individuals who may not be clinically ascertained, but little is known about the psychological impact of receiving genetic results in this setting. The current study sought to further the understanding of individuals’ psychological response to receiving an actionable genetic test result from genomic screening. Telephone surveys were conducted with patient-participants at 6 weeks and 6 months post genetic result disclosure between September 2019 and May 2021 and assessed emotional response to receiving results via the FACToR, PANAS, and decision regret scales. Overall, 354 (29.4%) study participants completed both surveys. Participants reported moderate positive emotions and low levels of negative emotions, uncertainty, privacy concern, and decision regret over time. There were significant decreases in negative emotions (p = 0.0004) and uncertainty (p = 0.0126) between time points on the FACToR scale. “Interested” was the highest scoring discrete emotion (T1 3.6, T2 3.3, scale 0−5) but was significantly lower at 6 months (<0.0001). Coupled with other benefits of genomic screening, these results of modest psychological impact waning over time adds support to clinical utility of population genomic screening programs. However, questions remain regarding how to elicit an emotional response that motivates behavior change without causing psychological harm.

Successful proband-mediated family communication and subsequent cascade genetic testing uptake requires interventions that present information clearly, in sufficient detail, and with medical authority. To facilitate family communication for patients receiving clinically actionable results via the MyCode® Community Health Initiative, a Family Sharing Tool (FST) and a cascade chatbot were developed. FST is an electronic mechanism allowing patients to share genetic test results with relatives via chatbot. The cascade chatbot describes the proband's result, associated disease risks, and recommended management and captures whether the user is a blood relative or caregiver, sex, and relationship to the proband. FST and cascade chatbot uptake among MyCode® probands and relatives was tracked from August 2018 through February 2020. Cascade genetic testing uptake was collected from testing laboratories as number of cascades per proband. Fifty-eight percent (316/543) of probands consented to FST; 42% (227/543) declined. Receipt preferences were patient electronic health record (EHR) portal (52%), email (29%), and text (19%). Patient EHR portal users (p < 0.001) and younger patients were more likely to consent (p < 0.001). FST was deployed to 308 probands. Fifty-nine percent (183/308) opened; of those, 56% (102/183) used FST to send a cascade chatbot to relatives. These 102 probands shared a cascade chatbot with 377 relatives. Sixty-two percent (235/377) of relatives opened; of these, 69% (161/235) started, and of these, 57% (92/161) completed the cascade chatbot. Cascade genetic testing uptake was significantly greater among relatives of probands who consented to the FST (M = 2.34 cascades, SD = 2.10) than relatives of probands who declined (M = 1.40 cascades, SD = 0.82, p < 0.001). Proband age was not a significant predictor of cascade genetic testing uptake. Further work is needed to better understand factors impacting proband use of FST and relative use of cascade chatbots., (© 2022 National Society of Genetic Counselors.)

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., (© The Author(s) 2022. Published by Oxford University Press on behalf of the Society of Behavioral Medicine.)

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., (©Carma L Bylund, Easton N Wollney, Gemme Campbell-Salome, Allison J Applebaum, Samantha R Paige, Kennan DeGruccio, Elisa Weiss, Maria Sae-Hau, Jason Arnold, Domenic Durante, Tithi B Amin, Chelsea N Hampton, Carla L Fisher. Originally published in JMIR Cancer (https://cancer.jmir.org), 05.07.2022.)

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.

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 (β = -0.11, p < 0.001), as well as cancer openness and avoidance (β = -0.07, p < 0.001). Conversation orientation also had significant indirect effects on caregivers' communication skills with a parent's clinician, mediated by avoidance (β = 0.08, p < 0.01) and SS (β = 0.06, p < 0.001). Finally, conversation orientation had significant indirect effects on caregivers' QCI mediated by avoidance (β = 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., (© 2022 John Wiley & Sons Ltd.)

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.

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., Competing Interests: The authors have declared that no competing interests exist.

Objective: To explore alignment of perspectives from individuals and families with familial hypercholesterolemia (FH) to the FH Global Call to Action recommendations., Methods: Interviews and focus groups were conducted with individuals and families with FH from multiple U.S. health systems and the Family Heart Foundation community to capture lived experiences and to identify barriers to diagnosis, cascade testing, and treatment. Participant perspectives were examined and classified, according to their alignment to recommendations of the FH Global Call to Action., Results: A total of 75 lived experiences were analyzed. Participants were majority female, mostly white, older, and well-educated. Participants most frequently mentioned recommendations were family-based care (84%) and screening, testing, & diagnosis (84%), followed by treatment (69%), advocacy (60%), cost & value (59%), awareness (56%), research & registries (43%), and severe & homozygous FH (11%). An average of 4.65 (SD 1.76) recommendations were mentioned., Conclusions: The FH Global Call to Action was driven by the persistent unmet needs of those living with FH in receiving a timely diagnosis, appropriate care, and support to prevent early morbidity and mortality. Patient- and family-centric perspectives suggest the FH Global Call to Action captures these concerns. Acting on recommendations, particularly improvements in screening and family-based care, will address patient, and public health, concerns., Competing Interests: The authors had access to all the study data, take responsibility for the accuracy of the analysis, and had authority over manuscript preparation and the decision to submit the manuscript for publication. None of the authors have any competing interests to disclose., (© 2022 The Authors.)

The public health impact of genomic screening can be enhanced by cascade testing. However, cascade testing depends on communication of results to family members. While the barriers and facilitators of family communication have been researched following clinical genetic testing, the factors impacting the dissemination of genomic screening results are unknown. Using the pragmatic Electronic Medical Records and Genomics Network-3 (eMERGE-3) study, we explored the reported sharing practices of participants who underwent genomic screening across the United States. Six eMERGE-3 sites returned genomic screening results for mostly dominant medically actionable disorders and surveyed adult participants regarding communication of results with first-degree relatives. Across the sites, 279 participants completed a 1-month and/or 6-month post-results survey. By 6 months, only 34% of the 156 respondents shared their results with all first-degree relatives and 4% did not share with any. Over a third (39%) first-degree relatives were not notified of the results. Half (53%) of participants who received their results from a genetics provider shared them with all first-degree relatives compared with 11% of participants who received their results from a non-genetics provider. The most frequent reasons for sharing were a feeling of obligation (72%) and that the information could help family members make medical decisions (72%). The most common reasons indicated for not sharing were that the family members were too young (38%), or they were not in contact (25%) or not close to them (25%). These data indicate that the professional returning the results may impact sharing patterns, suggesting that there is a need to continue to educate healthcare providers regarding approaches to facilitate sharing of genetic results within families. Finally, these data suggest that interventions to increase sharing may be universally effective regardless of the origin of the genetic result., (© 2021 National Society of Genetic Counselors.)

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.

Objective: Pharmacogenomic testing (PGx) is expanding into psychiatric care. PGx could potentially offer a unique benefit to psychiatric patients, providing information about patients' reaction to medications that could reduce the time and financial burdens of drug optimization. The aims of this study were to: (1) examine psychiatry patients' familiarity and interest in PGx, and (2) explore how Uncertainty Management Theory relates to PGx testing in psychiatry., Method: We surveyed psychiatric patients, measuring their PGx familiarity and interest, attitudes toward PGx testing, and preference for managing illness uncertainty., Results: We analyzed data from 598 patients. Patients' familiarity of PGx was low, but interest was high. Thirty percent of patients were familiar with the test from communication with their healthcare provider or their own online health information seeking. A preference for seeking information was a significant positive predictor of testing interest (p < .001)., Conclusion: Psychiatric patients were interested in PGx testing, regardless of their uncertainty management preferences., Practice Implications: This study is one of the first to examine psychiatric patients' perspectives on PGx testing in mental health care. Our findings show that psychiatric patients are interested in the test and are familiar enough with PGx to be included in future research on the topic., (Copyright © 2021 Elsevier B.V. All rights reserved.)

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., Competing Interests: Declaration of Competing Interest The authors report no conflicts of interest., (Copyright © 2020 Elsevier B.V. All rights reserved.)

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.

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., (© 2020 National Society of Genetic Counselors.)

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.

This study investigates patient perceptions of patient-provider communication and family communication patterns theory (FCPT). Using FCPT, the study predicts that family communicative environment relates to patient perceptions of patient involvement in care as well as patient satisfaction and medical adherence. Further, this study tests new measures of conformity orientation (warm and cold conformity) to investigate the multi-faceted nature of the variable. The results show significant relationships between FCPT and patient perceptions and outcomes. Specifically, warm conformity was the strongest and most reliable predictor of patient perceptions and outcomes across the three FCPT variables tested in the model. Additionally, results show differences between how warm and cold conformity predict patient perception and outcome variables. Finally, tests of the interaction between conversation orientation and both types of conformity indicate relationships between interaction variables and patient involvement in care, but not satisfaction or adherence. Practical implications and future research ideas are also discussed.

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., (Copyright © 2019 Elsevier Ltd. All rights reserved.)

Family communication environments can be a facilitator or barrier to family cooperation and communication in collecting family health history (FHH) information, which can facilitate disease prevention. This study examined the direct and indirect effects of family communicative environments on whether individuals actively collected FHH information, as well as how age and sex differences complicate this relationship. Participants ( N = 203) completed online surveys, answering close-ended questions about their family's communication patterns, how open their family is to communicating about FHH, and whether they have actively collected FHH information. Results show there was a direct effect between open family communicative environments and active collection, and found FHH communication openness was a positive partial mediator. Conversely, family environments stressing hierarchy and homogeneity of beliefs inhibit open communication about and collection of a FHH. Analysis of age and sex as moderators in the models showed a significant conditional indirect effects, which grew stronger as participants' age increased. Furthermore, results showed open family communicative environments lead to active collection of FHH for women, but not for men. Results confirm the importance of family communicative environments in facilitating or inhibiting FHH collection. Findings from the current study provide intervention points for practitioners to advise patients on the importance of collecting a FHH and guide behaviors to collect FHH information based on the family communicative environment.

This study explored how young adult women manage privacy regarding their health information as dependents on a parent's insurance policy. Under current and proposed health care reform in the United States, young adults between the ages of 18 and 26 years can remain on a parent's policy as a dependent, which can improve young adult's access to health care services. Although dependent expansion provisions can improve coverage for young adults, it may also threaten their privacy by giving a parent access to adult-child's private health information. Using Communication Privacy Management, this study investigated how dependent young adult women conceptualize and negotiate information ownership with parents in a forced disclosure situation. Results revealed young adult women either felt they alone should own and control their health information or believed a parent as the policy hold should have access to the information. However, all preferred to be in control of the disclosure and used core and catalyst criteria to manage the privacy dilemma current health care policy creates. Specifically, the threat of a parent seeing an adult-child used a stigmatized health service motivated young adult women to engage in deception, pay out of pocket for services covered by insurance, and put off or avoid health care. Results of this study complicate assumptions about privacy management and demonstrate how health care policy affects family communication.