Exploring genetic counselors' practice of discussing clinical trials with patients.

Despite concerted and accelerated efforts to increase the knowledge of medicine and disease via clinical studies, clinical trials continue to face low enrollment for all patient groups. The dissemination of the availability of clinical trials to individuals with or at risk for hereditary disorders is critical. This study acts as a foundation in determining an unexplored role of clinical trial discussion in genetic counseling practice. Board-certified, patient-facing genetic counselors in the United States were invited to participate in an anonymous survey via the National Society of Genetic Counselors. Between February and April 2022, 157 participants (N = 157) completed the survey on clinical trial discussion with patients, barriers, and facilitators to discussing clinical trials with patients, research experience, and demographics. Survey results identified that most respondents have discussed the availability of clinical trials with a patient (85%). Almost one-third have previous research experience working for a clinical trial (30%). Most agreed that discussions of clinical trials are within the scope of genetic counseling (82%); however, one-third were not comfortable discussing them with patients (34%). Respondents who know how to find specific clinical trials (p < 0.001) were reportedly more likely to be comfortable discussing clinical trials with their patients. In addition to clinical research exposure, this study suggests that further education and training is necessary for genetic counselors to learn how to find and identify specific clinical trials for their patients. In turn, we hope for this to increase genetic counselors' comfort of clinical trial discussion.

Exploring the impact of microaggressions on the genetic counseling student-supervisor relationship: A qualitative study.

Genetic counseling students with minoritized identities have reported experiencing microaggressions throughout graduate training, including from fieldwork supervisors. However, the impacts of these fieldwork experiences have not been thoroughly investigated. As supervision is known to be integral to genetic counseling students' skill development and success, the purpose of this qualitative study was to explore the impact of microaggressions on student training, with a specific focus on the supervisory working alliance. To achieve this goal, we conducted 11 interviews with recent genetic counseling graduates (2019-2021) who reported experiencing at least one microaggression from a fieldwork supervisor during graduate school training. Purposive sampling was used to prioritize interviewees who identified as underrepresented in the field due to race, ethnicity, gender identity, sexual orientation, and/or disability status. All interviewees were initially recruited as part of a larger mixed-methods study investigating the frequency and types of microaggressions genetic counseling students experience from fieldwork supervisors. Interview questions explored the time period before a microaggression event, during the event, and after. Qualitative thematic analysis resulted in four themes, three of which are presented in this paper: (1) Impact of microaggressions, (2) Barriers to reporting microaggressions, and (3) Experience reporting microaggressions. Microaggressions from supervisors were shown to impair the psychological well-being of participants and hinder learning opportunities. These experiences led participants to question their choice of profession and avoid time in clinic, ultimately constraining the development of strong supervisory working alliances. Some participants did not report microaggressions due to fear of negative repercussions, and those who did described defensive responses which harmed students' relationships with program leadership. This study reveals opportunities for supervisors to improve student training conditions by centering students' feelings and experiences, increasing open and honest communication, and extending psychosocial tools to supervision. Additionally, graduate programs are encouraged to establish structured reporting protocols for students and evaluate current shortcomings in equity and inclusion initiatives.

Exploring the occurrence of microaggressions in the genetic counseling student-supervisor relationship: A mixed-methods study.

While research has shown that genetic counseling students with minoritized racial or ethnic identities face microaggressions throughout graduate training, quantitative data regarding the frequency of these experiences have not been reported. The purpose of this mixed-methods study was to investigate the frequency and types of microaggressions experienced by graduates of accredited genetic counseling programs in the United States during fieldwork rotations. A quantitative survey was administered to assess how frequently 14 different types of microaggressions occurred in interactions with supervisors. Survey responses were analyzed using situation-based coding (the number of different types of microaggressions experienced) and frequency-based coding (the sum of participants' weighted Likert answers). Select survey respondents with minoritized identities were interviewed to better contextualize and categorize microaggression experiences. Analysis of 87 survey responses revealed that participants with minoritized racial and ethnic identities experience significantly more types of microaggressions (t(61) = 2.77; p = 0.007) at a significantly higher frequency (t(55) = 2.67; p = 0.010) than their white counterparts. Participants who identified as part of the disability community were also found to experience significantly more types of microaggressions (t(10) = 3.25; p = 0.009) at a significantly higher frequency (t(9) = 2.32; p = 0.045) than those who did not. Qualitative analysis of 11 interviews revealed that microaggressions from supervisors included offensive and inappropriate comments, unequal treatment, cultural intolerance, and disparaging feedback. Overall, our data present evidence that students with minoritized racial and ethnic identities and students with disabilities are subjected to a variety of inequitable, exclusionary, and harmful interactions. As a result, we recommend that all supervisors receive training about recognizing and preventing microaggressions to ensure that students are provided with an equitable and inclusive training experience, regardless of identity.

COVID-Related Stressors and Psychological Distress Among Chicago Residents: the Moderating Role of Race.

BACKGROUND: Racial and ethnic minorities have been disproportionately affected by the COVID-19 pandemic and have experienced greater financial loss, housing instability, and food insecurity due to COVID-related restrictions. As a result, Black and Hispanic communities may be at greater risk of experiencing psychological distress (PD). METHODS: Using data collected between October 2020 and January 2021from 906 Black (39%), White (50%), and Hispanic (11%) adults, we assessed racial/ethnic differences in the effect of three COVID-related stressors-employment stress, housing instability, and food insecurity-on PD using ordinary least square regression. RESULTS: Black adults reported lower PD levels compared to White adults (ß = - 0.23, P < 0.001), but Hispanic adults did not differ significantly from White adults. COVID-related housing instability (ß = 0.46, P < 0.001), food insecurity (ß = 0.27, P < 0.001), and employment stress (ß = 0.29, P < 0.001) were associated with higher PD. Employment stress was the only stressor to differentially affect PD by race/ethnicity. Among those that reported employment stress, Black adults had lower levels of distress compared to Whites (ß = - 0.54, P < 0.001) and Hispanics (ß = - 0.04, P = 0.85). CONCLUSION: Despite relatively high exposure to COVID-related stressors, Black respondents had lower levels of PD compared to Whites and Hispanics which may reflect differences in race-specific coping mechanisms. Future research is needed to elucidate the nuances of these relationships and identify policies and interventions that prevent and minimize the impact of employment, food, and housing-related stressors and support coping mechanisms that promote mental health among minority populations, such as policies that support easier access to mental health and financial and housing assistance.

Comorbidities are associated with state hopelessness in adults with ischemic heart disease.

BACKGROUND: In adults with ischemic heart disease (IHD), comorbidities and hopelessness are independently associated with increased risk of mortality. OBJECTIVES: To determine if comorbidities were associated with state and trait hopelessness and explore the influence of specific conditions and hopelessness in individuals hospitalized for IHD. METHODS: Participants completed the State-Trait Hopelessness Scale. Charlson Comorbidity Index (CCI) scores were generated from the medical record. A chi-squared test was used to examine differences in 14 diagnoses included in the CCI by CCI severity. Unadjusted and adjusted linear models were used to explore the relationship between hopelessness levels and the CCI. RESULTS: Participants (n=132) were predominantly male (68.9%), with a mean age of 62.6 years, and majority white (97%). The mean CCI was 3.5 (range 0-14), with 36.4% having a score of 1-2 (mild), 41.2% with a score of 3-4 (moderate) and 22.7% with a score of ≥5 (severe). The CCI was positively associated with both state (ß=0.03; 95% CI 0.01, 0.05; p=0.002) and trait (ß=0.04; 95% CI 0.01, 0.06; p=0.007) hopelessness in unadjusted models. The relationship for state hopelessness remained significant after adjusting for multiple demographic characteristics (ß=0.03; 95% CI 0.01, 0.05; p=0.02), while trait hopelessness did not. Interaction terms were evaluated, and findings did not differ by age, sex, education level, or diagnosis/type of intervention. CONCLUSION: Hospitalized individuals with IHD with a higher number of comorbidities may benefit from targeted assessment and brief cognitive intervention to identify and ameliorate state hopelessness which has been associated with worse long-term outcomes.

Reliability and Validity of the State-Trait Hopelessness Scale in a Primarily Rural Population of Adults With Ischemic Heart Disease in the US Great Plains.

PURPOSE: Hopelessness and rurality are each independently associated with increased mortality in adults with ischemic heart disease (IHD), yet there is no known research examining hopelessness in rural patients with IHD. The authors of this study evaluated the reliability and validity of the State-Trait Hopelessness Scale (STHS) in a primarily rural population of adults with IHD living in West North Central United States (US Great Plains). METHODS: Reliability, concurrent validity, and convergent validity were evaluated for 115 adults hospitalized for IHD. Rural-Urban Commuting Area codes were used to stratify participants by rurality level, with 66% categorized as rural. Principal component analysis was used to examine potential factor structure of the STHS. FINDINGS: Cronbach α for the State and Trait Hopelessness subscales were 0.884 and 0.903, respectively. Concurrent validity was supported for the State and Trait subscales using the Patient Health Questionnaire-8 (State: r = 0.50, P < .001; Trait: r = 0.35, P < .001). Convergent validity was supported for the State subscale using the Duke Activity Status Index ( r = -0.23, P = .013). Principal component analysis showed 2 factors (hopelessness present and hopelessness absent) for the State and Trait subscales, accounting for 63% and 58% of variance, respectively. CONCLUSIONS: Findings support the reliability and validity of the STHS for evaluation of hopelessness in rural adults with IHD in clinical and research settings. Results replicated the same factor structure found in testing of the STHS in a primarily urban sample. Because of the prevalence of hopelessness in rural adults with IHD and association with increased mortality, hopelessness should be assessed during hospitalization and in the recovery period.

Understanding COVID-19 Risk Perceptions and Precautionary Behaviors in Black Chicagoans: A Grounded Theory Approach.

OBJECTIVES: To determine whether actual community-level risk for COVID-19 in the Black community influenced individual perceptions of community-level and personal risk and how self-assessment of personal risk was reflected in the adoption of COVID-19 precautionary behaviors. METHODS: Semistructured interviews were conducted with 20 Black Chicago adults from February to July 2021. A grounded theory approach was used for the qualitative analysis and initial, focused, and theoretical coding were performed. RESULTS: We developed a grounded model consisting of four major themes: (a) Pre-Existing Health Conditions; (b) Presence of COVID-19 Infection in Participant Social Network; (c) COVID-19-Related Information, Participant Trust, and Perceived Personal Risk; and (d) Perceived Higher Burden of COVID-19 in the Black Community. CONCLUSIONS: Higher perceptions of personal risk were shaped by pre-existing health conditions and experiences with COVID-19 in one's social network but were not influenced by perceived higher burden of COVID-19 in the Black community. POLICY IMPLICATIONS: Black adults' perceptions of their individual risk and precautionary behaviors were not congruent with public health data and recommendations. Therefore, COVID-19 messaging and mitigation should be informed by local community engagement and transparent communication.

Accuracy of Perceived Breast Cancer Risk in Black and White Women with an Elevated Risk.

Introduction: Perceived breast cancer risk predicts screening behaviors. However, perceived risk is often inaccurate, notably in Black women, who often underestimate their risk despite having higher disease-specific mortality rates. We examined predictors of perceived breast cancer risk, and its impact on surveillance. Methods: We used baseline data from a randomized trial targeting unaffected women recruited by relatives with early-onset breast cancer. Data collection occurred between 2012 and 2013. Accuracy of perceived risk was assessed by comparing perceived risk to objective lifetime breast cancer risks, calculated with the Gail and Claus models. A multivariate mixed model regression examined predictors of accuracy of perceived risk. The impact of perceived risk on breast cancer surveillance was assessed with one-way ANOVAS comparing Black to White women. Results: Among participants, 21.4% self-identified as Black and 78.6% as White. Overall, 72.9% (n=247/339), 16.2% (n=55/339), and 10.9% (n=37/339) of participants overestimated, accurately perceived, and underestimated, respectively, their lifetime breast cancer risk. Race did not predict the accuracy of risk perception. Younger participants were more likely to overestimate their risk (ß=-.455; CI [-.772, -.138]; P=.005). MRI utilization was predicted by a higher objective risk (F 1,263 [= 30.271]; P<.001) and more accurate risk perception (P=.010; Fisher's exact test). Conclusions: Most women with a family history of early-onset breast cancer inaccurately perceived their risk for developing the disease. Younger women were more likely to overestimate their risk. Findings can guide the development of tailored interventions to improve adherence to breast cancer surveillance recommendations.

Heart up! RCT protocol to increase physical activity in cardiac patients who report hopelessness: Amended for the COVID-19 pandemic.

Hopelessness is associated with decreased physical activity (PA) and increased adverse events and death in patients with ischemic heart disease (IHD). Rates of PA in patients with IHD continue to be low in both hospital-based cardiac rehabilitation and home settings. While researchers have investigated strategies to increase PA among patients with IHD, interventions to promote PA specifically in IHD patients who report hopelessness are lacking. We describe the protocol for a NIH-funded randomized controlled trial designed to establish the effectiveness of a 6-week intervention (Heart Up!) to promote increased PA in IHD patients who report hopelessness. Participants (n = 225) are randomized to one of three groups: (1) motivational social support (MSS) from a nurse, (2) MSS from a nurse plus significant other support (SOS), or (3) attention control. Aims are to: (1) test the effectiveness of 6 weeks of MSS and MSS with SOS on increasing mean minutes per day of moderate to vigorous PA; (2) determine the effects of change in moderate to vigorous PA on hopelessness; and (3) determine if perceived social support and motivation (exercise self-regulation) mediate the effects of the intervention on PA. A total of 69 participants have been enrolled to date. The protocol has been consistently and accurately used by research personnel. We address the protocol challenges presented by the COVID-19 pandemic and steps taken to maintain fidelity to the intervention. Findings from this study could transform care for IHD patients who report hopelessness by promoting self-management of important PA goals that can contribute to better health outcomes.

Suicide Risk Management Protocol for a Randomized Controlled Trial of Cardiac Patients Reporting Hopelessness.

BACKGROUND: Investigators conducting studies that include potentially suicidal individuals are obligated to develop a suicide risk management (SRM) protocol. There is little available in the literature to guide researchers in SRM protocol development. OBJECTIVES: The aim of the study was to describe an SRM protocol developed for a randomized controlled trial (RCT) currently enrolling cardiac patients who report moderate to severe levels of hopelessness. METHODS: The SRM protocol identifies suicidal ideation and measures ideation severity through use of the Columbia-Suicide Severity Rating Scale risk factor questions. Based on responses, study participants are deemed safe or at low, moderate, or high risk for suicide. The SRM protocol guides research staff through a plan of action based on risk level. The protocol further guides staff through a plan over the course of this prospective study-from hospital enrollment to home-based visits. RESULTS: Research staff are well trained to identify suicidal ideation risk factors, initiate specific questioning about suicidal intent, determine level of risk, identify protective factors and a safe environment, and make referrals if needed. Of the 51 patients hospitalized with cardiac disease who reported moderate to severe hopelessness, 43 scored at a safe suicide risk level and 8 scored at low risk. Thirty-five of the 51 patients enrolled in the RCT. Of the 35 participants who received home visits to date, there have been three instances of low and one instance of moderate suicide risk. The SRM protocol has been consistently and accurately used by research personnel in both hospital and home settings. One modification has been made to the protocol since study activation, namely, the addition of an assessment of counseling history and encouragement of continued counseling. Booster training sessions of research staff will continue throughout the course of the RCT. DISCUSSION: Use of the SRM protocol identifies study participants who are safe or at risk for suicide in both hospital and home settings, and research staff can refer participants accordingly. CONCLUSION: The SRM protocol developed for this RCT can serve as a model in the development of SRM protocols for future research in acute care, community, or home-based settings.

Hopelessness Among Middle-Aged and Older Blacks: The Negative Impact of Discrimination and Protecting Power of Social and Religious Resources.

BACKGROUND AND OBJECTIVES: Hopelessness-a state of despair characterized by a negative outlook towards the future and a belief in insurmountable challenges-is a risk factor for major depression, cardiovascular disease, and all-cause mortality among older adults. It is also an understudied consequence of discrimination. Older blacks disproportionately report experiencing discrimination and, as a result, may be at greater risk of feeling hopeless. However, social and religious resources may protect against the adverse effects of discrimination. The current study examines whether social support, social engagement, religious attendance, and religiosity buffer the effects of self-reported everyday discrimination on hopelessness among a nationally representative sample of blacks. RESEARCH DESIGN AND METHODS: Using data from the 2010/2012 psychosocial assessment of the Health and Retirement Study, we regressed hopelessness on everyday discrimination, stratifying by 2 age groups, ages 51-64, representing middle-age (n = 1,302), and age 65 and older, representing old age (n = 887). Interaction terms tested whether each resource moderated the discrimination-hopelessness relationship controlling for depressive symptoms, socioeconomic status, and demographic characteristics. RESULTS: Greater reports of everyday discrimination were associated with higher levels of hopelessness for middle-aged and older blacks. For middle-aged blacks, the resources did not moderate the discrimination-hopelessness relationship; rather, higher levels of support (b = -0.294, p < .01), religiosity (b = -0.297, p < .001), religious attendance (b = -0.218, p < .05) were independently and inversely associated with hopelessness. For older blacks, higher levels of religiosity moderated the discrimination-hopelessness relationship (b = -0.208, p < .05) and higher levels of support (b = -0.304, p < .05) and social engagement (b = -0.236, p < .05) were independently and inversely associated with hopelessness. DISCUSSION AND IMPLICATIONS: Findings suggest that self-reported everyday discrimination increases hopelessness among middle-aged and older blacks but social and religious resources may counterbalance its effects, in age-specific ways, to protect against hopelessness. Religiosity may be especially important for older blacks as a buffer against the negative consequences of discrimination on hopelessness.

A Community-Driven Probability Survey of Disadvantaged Populations in Chicago: Sinai Community Health Survey 2.0.

BACKGROUND: Community-level health data are needed to identify and prioritize the most pressing health issues at the local level. OBJECTIVES: To conduct a community-driven probability health survey of disadvantaged Chicago communities in 2015-2016. METHODS: A safety-net hospital completed questionnaire development and dissemination in close partnership with a Community Advisory Committee (CAC), so the data captured accurately reflected community priorities. LESSONS LEARNED: The final survey sample included 1,543 adult interviews and proxy reports for 394 children, well below our original recruitment goal. Although ideal for area probability sampling, face-to-face surveys are challenging given declining response rates. Nevertheless, these data provide representative community-level data that is otherwise unavailable. CONCLUSIONS: Hyper-local data are especially critical for diverse and segregated cities such as Chicago. Lessons learned can be applied to future community surveys done by hospital systems, health departments, and community advocates to maximize the usefulness of findings.

Design of the patient navigator to Reduce Readmissions (PArTNER) study: A pragmatic clinical effectiveness trial.

Previous work indicates the potential for community health workers and peer coaches serving as patient navigators to improve processes of care and health outcomes during care transitions, but have not been sufficiently tested to determine if such programs improve measures of patient experience in minority serving institutions. The objectives of the Patient Navigator to Reduce Readmissions (PArTNER) study was to: 1) conduct a pragmatic clinical effectiveness trial comparing a multi-faceted, stakeholder-supported Navigator intervention (in-person CHW visits in the hospital and after hospital discharge, plus telephone-based peer coaching) versus usual care on the experience of hospital-to-home care transitions in patients hospitalized with heart failure, pneumonia, chronic obstructive pulmonary disease, myocardial infarction, or sickle cell disease; 2) examine the effectiveness of the Navigator intervention in patient subgroups; and 3) understand the barriers and facilitators of successfully implementing the Navigator intervention across patient populations. The co-primary outcomes are the 30-day changes in: 1) Patient Reported Outcomes Measurement Information System (PROMIS) emotional distress-anxiety, and 2) PROMIS informational support. Secondary outcomes at 30 and 60 days include other PROMIS health measures and hospital readmissions. Innovative features of the PArTNER study include early and continuous engagement of patients, their caregivers, clinicians, health system administrators, and other stakeholders to inform the design and implementation of the Navigator intervention. In this report, we describe the design of the PArTNER study.

Many Ingredients, One Sublime Dish: The Recipe for the Passage of Illinois HB5412 Into Law.

This article contextualizes the need for Illinois House Bill 5412 (HB5412), which calls for the establishment of a state board to create recommendations for the community health worker (CHW) field in Illinois, including a scope of practice, core competencies, training and certification standards, and sustainable funding and reimbursement mechanisms. Multisectorial partnerships and their outputs, coupled with frontline CHW interventions, created a synergistic climate conducive to the passing of this historic CHW legislation. This article provides a timeline and recipe for legislative success as described through processes and activities collaboratively undertaken, concentrating on a 5-year period (2009-2014).