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Informed consent is crucial for participant understanding, engagement, and partnering for research. However, current written informed consents have significant limitations, particularly for complex topics such as genomics and biobanking. Our goal was to identify how participants visually conceptualize terminology used in genomics and biobanking research studies, which might provide a novel approach for informed consent. An online convenience sample was used from May to July 2020 to collect data. Participants were asked to draw 10 randomly chosen words out of 32 possible words commonly used in consent forms for genomics and biobanking research. An electronic application captured drawings that were downloaded into a qualitative software program for analysis. A total of 739 drawings by 269 participants were captured. Participants were mostly female (61.3%), eight different race/ethnicities were represented (15.6% Black, 13.8% Hispanic), and most had some college education (68.8%). Some words had consistent visual themes such as different types of risky activities for risk or consistent specific images such as a double helix for DNA. Several words were frequently misunderstood (e.g., ascend for assent), while others returned few submissions (e.g., phenotype or whole genome sequencing). We found that although some words used in genomics and biobanking research were visually conceptualized in a common fashion, but misunderstood or less well-known words had no, few, or mistaken drawings. Future research can explore the incorporation of visual images to improve participant comprehension during consent processes, and how to utilize visual imagery to address more challenging concepts.

Racial/ethnic minority, low socioeconomic status, and rural populations are disproportionately affected by COVID-19. Developing and evaluating interventions to address COVID-19 testing and vaccination among these populations are crucial to improving health inequities. The purpose of this paper is to describe the application of a rapid-cycle design and adaptation process from an ongoing trial to address COVID-19 among safety-net healthcare system patients. The rapid-cycle design and adaptation process included: (a) assessing context and determining relevant models/frameworks; (b) determining core and modifiable components of interventions; and (c) conducting iterative adaptations using Plan-Do-Study-Act (PDSA) cycles. PDSA cycles included: Plan. Gather information from potential adopters/implementers (e.g., Community Health Center [CHC] staff/patients) and design initial interventions; Do. Implement interventions in single CHC or patient cohort; Study. Examine process, outcome, and context data (e.g., infection rates); and, Act. If necessary, refine interventions based on process and outcome data, then disseminate interventions to other CHCs and patient cohorts. Seven CHC systems with 26 clinics participated in the trial. Rapid-cycle, PDSA-based adaptations were made to adapt to evolving COVID-19-related needs. Near real-time data used for adaptation included data on infection hot spots, CHC capacity, stakeholder priorities, local/national policies, and testing/vaccine availability. Adaptations included those to study design, intervention content, and intervention cohorts. Decision-making included multiple stakeholders (e.g., State Department of Health, Primary Care Association, CHCs, patients, researchers). Rapid-cycle designs may improve the relevance and timeliness of interventions for CHCs and other settings that provide care to populations experiencing health inequities, and for rapidly evolving healthcare challenges such as COVID-19.

Population health management (PHM) is an important approach to promote wellness and deliver health care to targeted individuals who meet criteria for preventive measures or treatment. A critical component for any PHM program is a data analytics platform that can target those eligible individuals. Objective The aim of this study was to design and implement a scalable standards-based clinical decision support (CDS) approach to identify patient cohorts for PHM and maximize opportunities for multi-site dissemination. Materials and Methods An architecture was established to support bidirectional data exchanges between heterogeneous electronic health record (EHR) data sources, PHM systems, and CDS components. HL7 Fast Healthcare Interoperability Resources and CDS Hooks were used to facilitate interoperability and dissemination. The approach was validated by deploying the platform at multiple sites to identify patients who meet the criteria for genetic evaluation of familial cancer. Results The Genetic Cancer Risk Detector (GARDE) platform was created and is comprised of four components: (1) an open-source CDS Hooks server for computing patient eligibility for PHM cohorts, (2) an open-source Population Coordinator that processes GARDE requests and communicates results to a PHM system, (3) an EHR Patient Data Repository, and (4) EHR PHM Tools to manage patients and perform outreach functions. Site-specific deployments were performed on onsite virtual machines and cloud-based Amazon Web Services. Discussion GARDE’s component architecture establishes generalizable standards-based methods for computing PHM cohorts. Replicating deployments using one of the established deployment methods requires minimal local customization. Most of the deployment effort was related to obtaining site-specific information technology governance approvals.

Introduction: Many individuals who previously received negative genetic test results are eligible for updated testing. This study examined intention to communicate updated genetic test results to relatives in participants who previously received negative genetic test results. Methods: Women with a personal or family history of breast or ovarian cancer who tested negative for BRCA1/2 before 2013 were enrolled between April 2018 and October 2019. Proportions were calculated to assess intention to communicate updated genetic test results to living immediate family, extended family, and all family. Potential predictors of intentions from the theory of planned behavior (attitudes, subjective norms, perceived behavioral control) were assessed. The three outcomes were analyzed using generalized linear models with a quasi-binomial probability distribution. Results: 110 women completed the baseline assessment prior to updated testing. Participants intended to communicate genetic test results to 90% of immediate family, 51% of extended family, and 66% of all living relatives. Participants with higher subjective norms (aOR = 1.93, 95% CI: 1.08–3.57) had higher intentions to communicate genetic test results to extended family, while participants with more positive attitudes (aOR = 1.27, 95% CI: 1.01–1.60) had higher intentions to communicate to all family. Placing higher importance on genetic information was associated with higher intentions to communicate to immediate family (aOR = 1.40, 95% CI: 1.06–1.83). Lower subjective numeracy was associated with higher intentions to communicate to extended family (aOR = 0.50, 95% CI: 0.32–0.76). Conclusion: Attitudes and subjective norms were predictors of intention to communicate updated genetic information to at-risk biological relatives, and predictors may vary by degree of relationship.

Background Patients rarely dispose of left-over opioids after surgery. Disposal serves as a primary prevention against misuse, overdose, and diversion. However, current interventions promoting disposal have mixed efficacy. Increasing disposal in rural communities could prevent or reduce the harms caused by prescription opioids. Aims Identify barriers and facilitators to disposal in the rural communities of the United States Mountain West region. Methods We conducted a qualitative description study with 30 participants from Arizona, Idaho, Montana, Nevada, Oregon, Utah, and Wyoming. We used a phronetic iterative approach combining inductive content and thematic analysis with deductive interpretation through the Precaution Adoption Process Model (PAPM). Results We identified four broad themes: (a) awareness, engagement, and education; (b) low perceived risk associated with nondisposal; (c) deciding to keep left-over opioids for future use; and (d) converting decisions into action. Most participants were aware of the importance of disposal but perceived the risks of nondisposal as low. Participants kept opioids for future use due to uncertainty about their recovery and future treatments, breakdowns in the patient–provider relationship, chronic illness or pain, or potential future injury. The rural context, particularly convenience, cost, and environmental contamination, contributes to decisional burden. Conclusions We identified PAPM stage-specific barriers to disposal of left-over opioids. Future interventions should account for where patients are along the spectrum of deciding to dispose or not dispose as well as promoting harm-reduction strategies for those who choose not to dispose.

PURPOSE National Comprehensive Cancer Network guidelines for germline genetic testing have included pancreatic cancer in the context of additional family cancer history for many years but this was not recommended for patients with pancreatic ductal adenocarcinoma (PDAC) independent of a family history until 2019. This hypothesis-generating study reports the results from multigene panel testing for PDAC patients at an academic medical center. PATIENTS AND METHODS This prospective longitudinal feasibility study examined responses to genetic counseling and multigene panel testing among PDAC and breast or ovarian cancer (BrOv) patients between October 2016 and November 2017. Pre- and post-test surveys assessed perceptions of genetic risk and testing, recall, comprehension, and emotional reactions to results using open-ended and closed-ended items. RESULTS Forty-six BrOv and 33 PDAC patients were enrolled, and 44 BrOv and 31 PDAC participants underwent genetic testing. Seven pathogenic variants were identified in six BrOv participants (13.6%), and three pathogenic variants were identified in three PDAC participants (9.7%). The majority of both cohorts expressed similar attitudes about the importance of genetic testing for their personal and family medical management and expressed accurate understanding of implications of their results. Although sample size was small, there were no significant differences between the BrOv and PDAC cohorts for positive or negative emotions. CONCLUSION This study points to high rates of positive emotions and low rates of negative emotions following genetic test results, suggesting that the emotional reactions to genetic test results are similar for patients with BrOv and PDAC, despite poor prognosis with PDAC diagnoses. Because of the unique needs of the PDAC population following diagnosis, a multidisciplinary approach to germline genetic testing following diagnosis may result in best patient and family member outcomes.

Women with a personal history of breast or ovarian cancer who previously had BRCA1/2 testing now have the opportunity for additional genetic risk information through multi-gene panel testing. However, little is known about women's receptivity to further contact and uptake of genetic counseling and updated genetic testing. Utilizing a clinic database to identify potential participants, we prospectively contacted women in the United States with a personal and/or family history of breast or ovarian cancer who had negative BRCA1/2 testing, which was performed primarily between 2011 and 2018. Eligible and interested participants were scheduled for a genetic counseling appointment to discuss updated genetic testing using a multi-gene panel. We attempted to contact 455 participants, screened 203 (45%), and 103 (23%) completed a pre-test genetic counseling visit to discuss updated testing. Of these, 88 participants had updated multi-gene panel testing. Participants had an average age of 59 years, and most (78%) had breast cancer with an average age of 45 at diagnosis. The majority (97%) of participants were white. Of participants who underwent panel testing, 13% (n = 11) had at least one pathogenic variant identified. Most participants (86%) had an out-of-pocket cost of $100 or less for their panel. There is a sizable population of women with a personal and/or family history of breast or ovarian cancer and negative BRCA1/2 test results who would qualify for updated multi-gene panel testing. In our study, 59% of those reached who were eligible completed a pre-test genetic counseling visit. Clinics could consider an outreach program to offer genetic counseling and updated genetic testing. Supports for this type of effort may include coordinators and genetic counseling assistants and an available database with patients' contact information and prior genetic test results. Updated testing allows women more information about their risk and may expand the value of genetic counseling.

This case study focuses on a video telehealth consult to discuss genetic testing results. Participants include a Genetic Counselor (GC) and a Patient (P) previously diagnosed with ovarian cancer who is currently undergoing chemotherapy treatments. Utilizing conversation analysis (CA), attention is first given to a series of interactional dilemmas as GC delivers and P responds to negative, uncertain, and complex test results. Specific findings address practices employed by GC to structure the encounter and establish authority, impacts on P's participation and understandings, recurring and at times problematic orientations to "negative" findings, and inherent ambiguities faced by GC and P when attempting to discern good and bad news. Close examination of these moments provides a unique opportunity to identify, describe, and explain genetic counseling as a co-produced, interactional achievement. These findings are then integrated with patient's post-counseling survey (susceptibility, anxiety, uncertainty, fear, and hope), including reported experiences which broaden understandings of the interactional environment. Specific recommendations are raised for improving counseling skills, enhancing patients' understandings, and building therapeutic alliances addressing both patients' emotional circumstances and the complexities of genetic test results.

ImportanceClinical decision support (CDS) algorithms are increasingly being implemented in health care systems to identify patients for specialty care. However, systematic differences in missingness of electronic health record (EHR) data may lead to disparities in identification by CDS algorithms.ObjectiveTo examine the availability and comprehensiveness of cancer family history information (FHI) in patients’ EHRs by sex, race, Hispanic or Latino ethnicity, and language preference in 2 large health care systems in 2021.Design, Setting, and ParticipantsThis retrospective EHR quality improvement study used EHR data from 2 health care systems: University of Utah Health (UHealth) and NYU Langone Health (NYULH). Participants included patients aged 25 to 60 years who had a primary care appointment in the previous 3 years. Data were collected or abstracted from the EHR from December 10, 2020, to October 31, 2021, and analyzed from June 15 to October 31, 2021.ExposuresPrior collection of cancer FHI in primary care settings.Main Outcomes and MeasuresAvailability was defined as having any FHI and any cancer FHI in the EHR and was examined at the patient level. Comprehensiveness was defined as whether a cancer family history observation in the EHR specified the type of cancer diagnosed in a family member, the relationship of the family member to the patient, and the age at onset for the family member and was examined at the observation level.ResultsAmong 144 484 patients in the UHealth system, 53.6% were women; 74.4% were non-Hispanic or non-Latino and 67.6% were White; and 83.0% had an English language preference. Among 377 621 patients in the NYULH system, 55.3% were women; 63.2% were non-Hispanic or non-Latino, and 55.3% were White; and 89.9% had an English language preference. Patients from historically medically undeserved groups—specifically, Black vs White patients (UHealth: 17.3% [95% CI, 16.1%-18.6%] vs 42.8% [95% CI, 42.5%-43.1%]; NYULH: 24.4% [95% CI, 24.0%-24.8%] vs 33.8% [95% CI, 33.6%-34.0%]), Hispanic or Latino vs non-Hispanic or non-Latino patients (UHealth: 27.2% [95% CI, 26.5%-27.8%] vs 40.2% [95% CI, 39.9%-40.5%]; NYULH: 24.4% [95% CI, 24.1%-24.7%] vs 31.6% [95% CI, 31.4%-31.8%]), Spanish-speaking vs English-speaking patients (UHealth: 18.4% [95% CI, 17.2%-19.1%] vs 40.0% [95% CI, 39.7%-40.3%]; NYULH: 15.1% [95% CI, 14.6%-15.6%] vs 31.1% [95% CI, 30.9%-31.2%), and men vs women (UHealth: 30.8% [95% CI, 30.4%-31.2%] vs 43.0% [95% CI, 42.6%-43.3%]; NYULH: 23.1% [95% CI, 22.9%-23.3%] vs 34.9% [95% CI, 34.7%-35.1%])—had significantly lower availability and comprehensiveness of cancer FHI (P Conclusions and RelevanceThese findings suggest that systematic differences in the availability and comprehensiveness of FHI in the EHR may introduce informative presence bias as inputs to CDS algorithms. The observed differences may also exacerbate disparities for medically underserved groups. System-, clinician-, and patient-level efforts are needed to improve the collection of FHI.

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Introduction Moving beyond numeric representations of risk perceptions, we examine cognitive causation, or superstitious thinking, and negative affect in risk as predictors of MC1R (i.e., moderate v. high risk) skin cancer genetic testing and responses to this testing. Methods Participants ( N = 496) completed baseline assessments using validated measures of cognitive causation (beliefs that thinking about cancer risk increases cancer likelihood) and negative affect in risk (negative feelings generated during risk perception) and subsequently received a test offer. Participants could access a website to learn about and request genetic testing. Those who tested ( n = 167) completed assessments of cognitive and affective reactions 2 wk after testing, including the Impact of Events–Revised Intrusive thoughts subscale. Results Those with higher negative affect in risk were less likely to return a saliva sample for testing (odds ratio = 0.98, 95% confidence interval = 0.96–0.99). Those with higher cognitive causation reported more fear ( b = 0.28–0.31; P’s < 0.05). Higher negative affect in risk was associated with more emotion-laden test responses, particularly in those receiving higher-risk as compared with average-risk results. Conclusion Negative affect in risk did not hamper test information seeking, although it did inhibit the uptake of genetic testing. Those with higher cognitive causation showed more fear regarding their test result, as indicated by higher distress in those who received average-risk results and lower believability in those who received higher-risk results.

Genetic testing is becoming an integral part of healthcare, but evidence suggests that both race and ethnicity influence access to and utilization of genetic testing. Given this barrier, data are needed on the perceptions of genetic testing in racial and ethnic minority groups. The purpose of this study was to explore the perceptions of three types of genetic testing (genetic testing for adult-onset conditions, prenatal screening, and newborn screening) in a sample of US participants who identified as White, Pacific Islander, and Latinx (10 dyads from each group for 60 participants total). Data were collected through semi-structured dyadic interviews and assessed using thematic analysis. The major themes were knowledge as empowering, knowledge as stressful, and predictive nature of prenatal testing and newborn screening. Some differences were seen in themes by race and ethnicity. A sense of collective and familial health appeared to be a more important theme for Pacific Islander and Latinx participants compared to White participants. Adult-onset genetic testing was viewed variously across all groups with some noting how it may increase anxiety, particularly if the disease screened for was unable to be prevented with action. All three groups reported on the positives of prenatal testing and newborn screening yet often were confused on the differences between them. This study presents novel perceptions of genetic testing in participants from diverse communities across three types of genetic testing. Genetic healthcare providers should incorporate participants’ perceptions, values, and beliefs into their counseling delivery as a way to engage with diverse communities.

Family communication about skin cancer risk may motivate protective behaviors. However, it is unclear how widespread such communication might be. In this study, we describe prevalence and patterns (across environmental, personal, and behavioral factors) of family communication about skin cancer across N = 600 diverse (79% female, 48% Hispanic, 44% non-Hispanic White) primary care patients from Albuquerque, New Mexico, a geographical location with year-round sun exposure. Over half reported discussing general cancer (77%) and skin cancer risks (66%) with their families. The most frequent target of skin cancer risk communication included doctors (54%), followed by friends/coworkers (49%), spouse/partner (43%), other family members (38%), sisters (36%), mothers (36%), daughters (33%), sons (32%), father (24%), and brothers (22%). On average, participants reported having talked to three family members about skin cancer risks. The most frequently discussed content of skin cancer risk communication was the use of sun protection (89%), followed by the personal risk of skin cancer (68%), who had skin cancer in the family (60%), family risk of skin cancer (59%), time of sun exposure (57%), and skin cancer screening (57%). A family or personal history of cancer, higher perceived risk, higher health literacy, being non-Hispanic, having higher education or income, and proactive sun protective behavior were associated with greater family communication about general cancer and skin cancer risks. These study findings have implications for interventions that encourage discussions about skin cancer risk, sun protection, and skin cancer screening that lead to adoption of sun-safe behaviors.

OBJECTIVE. This study investigated how self-reported numeracy ability and preferences predict preferences for the amount and types of information provided about genome sequencing results among 1,080 women diagnosed with breast cancer at age 40 or younger. METHODS. Participants reported their level of interest in 14 topics related to genome sequencing results on a survey. We calculated a Participant Information Needs (PIN) value based on the number of topics for which a participant wanted “a lot” of information. Numeracy was assessed using the Subjective Numeracy Scale. Analyses examined associations between the numeracy ability and preferences subscales, information needs for individual content topics, and PIN. RESULTS. Higher preference for numeric data was correlated with increased PIN (β=0.60, p

OBJECTIVE. Few studies have examined how health literacy impacts responses to genetic information. METHODS. We examined this issue among 145 English or Spanish-speaking adult primary care patients enrolled in a trial that offered testing for MC1R gene variants that confer moderately increased melanoma risk. We investigated whether health literacy skills, educational attainment, or melanoma risk were related to short-term cognitive and affective responses to genetic test results. RESULTS. On average, participants found the test results to be highly believable and clear, with low levels of negative emotional responses and moderate levels of positive responses. In adjusted models, health literacy skills were significantly inversely associated with confusion (OR = 0.75, 95% CI = 0.58, 0.96); those with higher education thought significantly less about their test results (β = −0.66), were less hopeful (β = −0.89), and had lower distress (β = −1.15). We also observed a significant interaction (p

Genetic counselors (GCs) have traditionally been trained to adopt a position of equipoise or clinical neutrality. They provide information, answer questions, address barriers, and engage in shared decision-making, but generally, they do not prescribe a genetic test. Historically, GCs have generally been trained not to persuade the ambivalent or resistant patient. More recently, however, there has been discussion regarding when a greater degree of persuasion or directionality may be appropriate within genetic counseling (GC) and what role MI may play in this process. The role for “persuasive GC” is based on the premise that some genetic tests provide actionable information that would clearly benefit patients and families by impacting treatment or surveillance. For other tests, the benefits are less clear as they do not directly impact patient care or the benefits may be more subjective in nature, driven by patient values or psychological needs. For the former, we propose that GCs may adopt a more persuasive clinical approach while for the latter, a more traditional equipoise stance may be more appropriate. We suggest that motivational interviewing (MI) could serve as a unifying counseling model that allows GCs to handle both persuasive and equipoise encounters. For clearly beneficial tests, while directional, the MI encounter can still be non-directive, autonomy-supportive, and patient-centered. MI can also be adapted for equipoise situations, for example, placing less emphasis on eliciting and strengthening change talk as that is more a behavior change strategy than a shared decision-making strategy. The core principles and strategies of MI, such as autonomy support, evocation, open questions, reflective listening, and affirmation would apply to both persuasive and equipoise encounters. Key issues that merit discussion include how best to train GCs both during their initial and post-graduate education.

Successful recovery after surgery is complex and highly individual. Rural patients encounter greater barriers to successful surgical recovery than urban patients due to varying healthcare and community factors. Although studies have previously examined the recovery process, rural patients' experiences with recovery have not been well-studied. The rural socioecological context can provide insights into potential barriers or facilitators to rural patient recovery after surgery.We conducted semi-structured qualitative interviews with a purposeful sample of 30 adult general surgery patients from rural areas in the Mountain West region of the United States. We used the socioecological framework to analyze their responses. Interviews focused on rural participants' experiences accessing healthcare and the impact of family and community support during postoperative recovery. Interviews were transcribed verbatim and coded using content and thematic analysis.All participants commented on the quality of their rural healthcare systems and its influence on postoperative care. Some enjoyed the trust developed through long-standing relationships with providers in their communities. However, participants described community providers' lack of money, equipment, and/or knowledge as barriers to care. Following surgery, participants recognized that there are advantages and disadvantages to receiving family and community support. Some participants worried about being stigmatized or judged by their community.Future interventions aimed at improving access to and recovery from surgery for rural patients should take into account the unique perspectives of rural patients. Addressing the socioecological factors surrounding rural surgery patients, such as healthcare, family, and community resources, will be key to improving postoperative recovery.

Background Family health history has been recognized as an essential factor for cancer risk assessment and is an integral part of many cancer screening guidelines, including genetic testing for personalized clinical management strategies. However, manually identifying eligible candidates for genetic testing is labor intensive. Objective The aim of this study was to develop a natural language processing (NLP) pipeline and assess its contribution to identifying patients who meet genetic testing criteria for hereditary cancers based on family health history data in the electronic health record (EHR). We compared an algorithm that uses structured data alone with structured data augmented using NLP. Methods Algorithms were developed based on the National Comprehensive Cancer Network (NCCN) guidelines for genetic testing for hereditary breast, ovarian, pancreatic, and colorectal cancers. The NLP-augmented algorithm uses both structured family health history data and the associated unstructured free-text comments. The algorithms were compared with a reference standard of 100 patients with a family health history in the EHR. Results Regarding identifying the reference standard patients meeting the NCCN criteria, the NLP-augmented algorithm compared with the structured data algorithm yielded a significantly higher recall of 0.95 (95% CI 0.9-0.99) versus 0.29 (95% CI 0.19-0.40) and a precision of 0.99 (95% CI 0.96-1.00) versus 0.81 (95% CI 0.65-0.95). On the whole data set, the NLP-augmented algorithm extracted 33.6% more entities, resulting in 53.8% more patients meeting the NCCN criteria. Conclusions Compared with the structured data algorithm, the NLP-augmented algorithm based on both structured and unstructured family health history data in the EHR increased the number of patients identified as meeting the NCCN criteria for genetic testing for hereditary breast or ovarian and colorectal cancers.

OBJECTIVE: Many people say they “don’t know” their risk for common diseases (DK responders). Inadequate health literacy and higher disease information avoidance may suppress risk knowledge and thereby increase DK responding. Study goals were to examine two plausible interventions to address the health education needs of DK responders. DESIGN: Participants were identified in a pre-screener as DK responders for either diabetes or colorectal cancer (CRC) risk perception questions (N=1276; 35% non-white; 49% inadequate health literacy). They were randomly assigned to read either standard or low literacy risk information about diabetes or CRC, and to undergo a self-affirmation intervention or not. MAIN OUTCOME MEASURE: DK responding following reading the risk information. RESULTS: Neither intervention reduced DK responding. Multivariable analyses showed that health literacy, information avoidance, and believing the disease is unpredictable – but not risk factor knowledge and need for cognition – best predicted participants’ conversion from a DK response to a non-DK scale point response. CONCLUSION: Results confirm that both inadequate health literacy and higher information avoidance are associated with DK responding. DK responders are also disproportionately underserved and less adherent to health behaviors. Because galvanizing risk perceptions are central to public health, addressing their information needs is a priority.

This study examines how family history-related factors and causal beliefs affect underserved women’s cancer risk perceptions and adherence to mammography. 1,010 patients at a primary care safety net clinic at a large urban hospital completed a survey in 2015. Of the 1,010 patients, 467 women 45 years of age or older were included in this analysis. The majority of participants were African American (68%). We built multivariable linear and logistic regression models to examine the dependent variables of cancer risk perception and mammography screening adherence. According to the results, those with a family history of cancer were significantly more likely to be adherent to mammography. Perceived importance of family health history also significantly predicted their mammography screening adherence. However, cancer risk perceptions did not predict underserved women’s mammography adherence. Significant interaction effects on the associations 1) between family cancer history, cancer risk perceptions, and mammography screening adherence and 2) between race, behavioral causal beliefs, and risk perceptions were found. Findings suggest that implementing different strategies across racial groups and by cancer history may be necessary to promote regular mammography screening.

Background High-quality decision making is important in patient-centered care. Although patient involvement in decision making varies widely, most patients desire to share in decision making. The Press-Ganey Patient Satisfaction survey includes questions that measure patients' perceptions of their providers' efforts to involve them in decision making (PGDM). We hypothesized that higher PGDM scores would correlate with higher scores on a validated measure of patient centeredness. Materials and methods Surgical providers at a university hospital who routinely receive Press-Ganey scores received a survey that included the Patient-Practitioner Orientation Scale (PPOS), a validated tool that measures the provider's orientation toward patient centeredness on a continuous six-point scale: score ≥5 = high, 4.57-5 = moderate, and Results Eighty-six of 112 (75%) of surgical providers responded to the survey. Fifty-two (46%) had PGDM scores available and 26% achieved a perfect score on the PGDM. The overall PPOS scores were low, with a mean of 4.2 (SD = 0.5). The PPOS was not correlated with the PGDM, correlation coefficient (rs) = −0.07 (CI: −0.34-0.21, P = 0.63). Similarly, the two subscales of the PPOS did not correlate with the PGDM with rs = −0.15 (CI: −0.41-0.13, P = 0.29) for “caring” and rs = −0.04 (CI: −0.31-0.23, P = 0.76) for “sharing”. Conclusions Although surgical providers scored low in patient centeredness using the PPOS, over one-quarter (26%) of them rank in the top 1% on the PGDM. No correlation was found between providers' patient centeredness and their patients' perceptions of efforts to include them in decision making.

Objective: Interventions aimed at limiting opioid use are widespread. These are most often targeted toward prescribers or health systems. Patients’ perspectives are too often absent during the creation of such interventions. This qualitative study aims to understand patient experiences with education about perioperative pain control, from preoperative expectation-setting to post-operative pain control strategies and ultimately opioid disposal.Design: We performed semistructured interviews focused on patient experiences in the perioperative period. Content from interview transcripts was analyzed using a constant comparative method.Setting: All participants underwent surgery at a single, academic tertiary-care center.Participants: Adult patients who had a general surgery operation in the prior 60 days.Outcome measure: Key themes from interviews about perioperative pain management, specifically related to preoperative expectation-setting and post-operative education.Results: Patients identified gaps in communication and education in three main areas: preoperative expectation setting of post-operative pain; post-operative pain control strategies, including use of opioid medications; and the importance of appropriate opioid disposal. Failure to set expectations led to either significant patient anxiety preoperatively or poor preparation for home discharge. Poor education on pain control strategies led to misinformation on when and how to use opioids. Lack of education on opioid disposal led to most participants failing to properly dispose of leftover medication.Conclusions: Gaps in education surrounding post-operative pain and opioid use can lead to patient anxiety, inappropriate use of opioids, and poor disposal rates of leftover medications. Future interventions aimed at patient education to improve pain management and opioid stewardship should be created with an understanding of patient experiences and perceptions.

Public availability of genetic information is increasing, thus, efforts to improve diversity in basic and translational research in genomics is a top priority. Given the increasing U.S. incidence and mortality of melanoma, and the prevalence of common melanocortin-1 receptor (MC1R) gene melanoma risk variants in the general population, we examined genomic testing of MC1R for skin cancer risk in a randomized controlled trial in Albuquerque, New Mexico primary care. Participants were 48% Hispanic and were randomized 5:1 to a MC1R test invitation or usual care. We assessed 3 month sun protection, skin cancer screening, and skin cancer worry outcomes associated with testing, and key effect moderators (e.g., cancer risk perceptions, and skin cancer risk factors). Our findings indicate that the primary outcomes were unchanged by the MC1R test offer, test acceptance, and level of risk feedback. Moderator analyses showed that those with lower risk perception, and those with skin that readily tans, significantly increased their sun protection in response to higher than average risk feedback. Risk feedback did not prompt cancer worry, and average risk feedback did not erode existing sun protection. This study paves the way for the development of tailored strategies to address low skin cancer risk awareness in this understudied context of public health genomics.

Background Precision medicine research depends upon recruiting large and diverse participant cohorts to provide genetic, environmental, and lifestyle data. How prospective participants react to information about this research, including depictions of uncertainty, is not well understood. Purpose The current study examined public responses to precision medicine research, focusing on reactions toward (a) uncertainty about the scientific impact of sharing data for research, and (b) uncertainty about the privacy, security, or intended uses of participant data. Methods U.S. adults (N = 674; 51.9% male; 50% non-Hispanic white; Mage = 42.23) participated in an online experimental survey. Participants read a manipulated news article about precision medicine research that conveyed either certainty or uncertainty of each type (scientific, data). Participants then rated their attitudes toward the research, trust in the researchers, and willingness to join a cohort. We tested direct and mediated paths between message condition and outcomes and examined individual characteristics as moderators. Results Overall attitudes were positive and a majority of participants (65%) reported being somewhat or very likely to participate in precision medicine research if invited. Conveying uncertainty of either type had no overall main effect on outcomes. Instead, those who reported perceiving greater uncertainty had lower attitudes, trust, and willingness to join, while those with more tolerance for uncertainty, support for science, and scientific understanding responded favorably to the scientific uncertainty disclosure. Conclusions Findings suggest responses to precision medicine research uncertainty are nuanced and that successful cohort enrollment may be well-supported by a transparent approach to communicating with prospective participants.

Few studies have examined comprehension and miscomprehension of genetic risk feedback for moderate-risk genes in the general population. We examined the prevalence and nature of accurate and inaccurate genetic risk feedback comprehension among those who received genetic testing for melanocortin-1-receptor (MC1R) gene variants that confer moderate melanoma risk. Participants (N = 145 Albuquerque, NM) were tested as part of a randomized controlled trial. Two weeks after receiving MC1R genetic risk feedback, participants answered open-ended questions regarding their reactions to the MC1R feedback report. Participants’ comprehension of their feedback (average-risk or higher-risk for melanoma) was evaluated through qualitative analysis of open-ended responses. Most participants demonstrated comprehension of their feedback results (i.e., 63% of average-risk participants [ARPs]; 51% of higher-risk participants [HRPs]). Miscomprehension was evident in fewer participants (i.e., 16% of ARPs, 11% of HRPs). A few ARPs misunderstood the purpose of testing, whereas a few HRPs reported confusion about the meaning of their risk feedback. Some participants’ responses to the open-ended questions were too ambiguous to ascertain comprehension or miscomprehension (i.e., 21% of ARPs, 38% of HRPs). Taken together, these findings suggest that genetic testing feedback for MC1R risk variants is largely comprehensible to general population participants. This study adds to the work examining comprehension and usage of common, moderate risk genetic information in public health contexts. However, to maximize the utility of genetic risk information in the general population, further research is needed to investigate and address areas where common genetic risk feedback misunderstandings occur. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12687-021-00566-9.

Background Advances in genetics and sequencing technologies are enabling the identification of more individuals with inherited cancer susceptibility who could benefit from tailored screening and prevention recommendations. While cancer family history information is used in primary care settings to identify unaffected patients who could benefit from a cancer genetics evaluation, this information is underutilized. System-level population health management strategies are needed to assist health care systems in identifying patients who may benefit from genetic services. In addition, because of the limited number of trained genetics specialists and increasing patient volume, the development of innovative and sustainable approaches to delivering cancer genetic services is essential. Methods We are conducting a randomized controlled trial, entitled Broadening the Reach, Impact, and Delivery of Genetic Services (BRIDGE), to address these needs. The trial is comparing uptake of genetic counseling, uptake of genetic testing, and patient adherence to management recommendations for automated, patient-directed versus enhanced standard of care cancer genetics services delivery models. An algorithm-based system that utilizes structured cancer family history data available in the electronic health record (EHR) is used to identify unaffected patients who receive primary care at the study sites and meet current guidelines for cancer genetic testing. We are enrolling eligible patients at two healthcare systems (University of Utah Health and New York University Langone Health) through outreach to a randomly selected sample of 2780 eligible patients in the two sites, with 1:1 randomization to the genetic services delivery arms within sites. Study outcomes are assessed through genetics clinic records, EHR, and two follow-up questionnaires at 4 weeks and 12 months after last genetic counseling contactpre-test genetic counseling. Discussion BRIDGE is being conducted in two healthcare systems with different clinical structures and patient populations. Innovative aspects of the trial include a randomized comparison of a chatbot-based genetic services delivery model to standard of care, as well as identification of at-risk individuals through a sustainable EHR-based system. The findings from the BRIDGE trial will advance the state of the science in identification of unaffected patients with inherited cancer susceptibility and delivery of genetic services to those patients. Trial registration BRIDGE is registered as NCT03985852. The trial was registered on June 6, 2019 at clinicaltrials.gov.

Background:The Melanocortin 1 Receptor (MC1R) contributes to pigmentation, an important risk factor for developing melanoma. Evaluating SNPs in MC1R and association with race/ethnicity, skin type, and perceived cancer risk in a New Mexico (NM) population will elucidate the role of MC1R in a multicultural population.Methods:We genotyped MC1R in 191 NMs attending a primary care clinic in Albuquerque. We obtained individuals' self-identified race/ethnicity, skin type, and perceived cancer risk. We defined genetic risk as carriage of any one or more of the nine most common SNPs in MC1R.Results:We found that one MC1R SNP, R163Q (rs885479), was identified in 47.6% of self-identified Hispanics and 12.9% of non-Hispanic whites (NHW), making Hispanics at higher “genetic risk” (as defined by carrying one of the MC1R common variants). When we deleted R163Q from analyses, Hispanics were no longer at higher genetic risk (33.3%) compared with NHW (48.3%), consistent with melanoma rates, tanning ability, and lower perceived risk. Hispanics had a perceived risk significantly lower than NHW and a nonsignificant better tanning ability than NHW.Conclusions:The R163Q variant in MC1R may not be a risk factor for melanoma among NM Hispanics. This suggestion points to the need to carefully interpret genetic risk factors among specific populations.Impact:Genetic risk cannot be extrapolated from Northern European populations directly to non-European populations.

Effective use of genetic and genomic data in cancer prevention and treatment depends on adequate communication with patients and the public. Although relevant empirical work has emerged, the scope and outcomes of this communication research have not been characterized. We conducted a comprehensive scoping review of recent published research (2010–2017) on communication of cancer-related genetic and genomic testing (CGT) information. Searches in six databases revealed 9,243 unique records; 513 papers were included. Most papers utilized an observational quantitative design; fewer utilized an experimental design. More attention has been paid to outcomes of CGT results disclosure than to decision making regarding CGT uptake or the process of results disclosure. Psychosocial outcomes were most common across studies. This literature has a strong focus on BRCA1/2, with few papers focused on Lynch syndrome or next-generation technologies. Women, Caucasians, older adults, and those of higher socioeconomic status were overrepresented. Research gaps identified include the need for studies on the process of CGT communication; examining behavioral, decision-making, and communication outcomes; and inclusion of diverse populations. Addressing these gaps can help improve the use of genomics in cancer control and reduce disparities in access to and use of CGT.

This study investigates how patients’ privacy concerns about research uses of biospecimen and trust in doctors are associated with their preferences for informed consent and need for control over biospecimens in a biobank. Particularly, this study focuses on the perspectives of Communication Privacy Management theory, precision medicine, and racial health disparities. We recruited 358 women aged 40 and older stratified by race (56% African American and 44% European American). Multivariable linear regression models examined hypothesis and research questions. Individuals’ privacy concerns and trust in doctors were significantly associated with their need for control. Although participants’ privacy concerns were positively associated with their preference for study-specific model, trust in doctors had no effect on the preference. African American participants needed more control over their sample, and were more likely to prefer study-specific model compared to European American participants. Significant interactions by race on the associations between trust and need for control and between privacy concerns and preference for study-specific model were found. These findings suggest that when developing large diverse biobanks for future studies it is important to consider privacy concerns, trust, and need for control with an understanding that there are differences in preferences by race.